La Vie Cystique d'une Femme Mystique

being lonely is a habit, like smoking or taking drugs - I quit them both, but man was it rough

2011-10-15T10:55:00.000-07:00

I haven't been myself for sometime now. Probably a few years, but particularly the past 2 years and most acutely the past 10 months. I know the reasons for a lot of this. It's just that I kept believing that I was in a funk and that I'd snap out of it. I mean, we all go down in the hole from time to time, don't we? The thing is, I haven't been able to crawl out. I am in deep. I finally decided it was time to give myself a diagnosis. Situational depression is certainly part of it, but the past 10 months can only be filed away in one place that I can see: Post traumatic stress disorder. I have nearly every symptom listed and it's all following a catastropichally horrid even that took place January 13th and has unfoled over the past 10 months.

Symptoms of PTSD fall into three main categories:

1. "Reliving" the event, which disturbs day-to-day activity
•Flashback episodes, where the event seems to be happening again and again
•Repeated upsetting memories of the event
•Repeated nightmares of the event
•Strong, uncomfortable reactions to situations that remind you of the event

2. Avoidance
•Emotional "numbing," or feeling as though you don't care about anything
•Feeling detached
•Being unable to remember important aspects of the trauma
•Having a lack of interest in normal activities
•Showing less of your moods
•Avoiding places, people, or thoughts that remind you of the event
•Feeling like you have no future

3. Arousal
•Difficulty concentrating
•Startling easily
•Having an exaggerated response to things that startle you
•Feeling more aware (hypervigilance)
•Feeling irritable or having outbursts of anger
•Having trouble falling or staying asleep

Just writing about this makes me want to cry. I've been hiding out in my house in the shroud of my fear as if my fear and vigilance will protect me.

I've realized that I have not got much faith. I mean, yes, I have always been a person who has prayed for guidance and help, for protection of myself or my children, to express gratitude. But I've never had faith that 'god knows' what's best, or that things happen for a reason or that if I just put my faith and trust into a power greater than myself that things will happen as they should. I'm terrified to relase that kind of control, even if that control is an illusion.

It's an angry circle that I can't get out of. I haven't even been doing treatments, if I'm to be really honest. I just don't care. I don't have the motivation to do anything than the basic requirements. I am miserable, but I don't know how to get out of it. I will make plans: get on the treadmill, sew something, do just one treatment for the day - but when the time comes, I just can't. I take my kids to school; I do the housework required of me; I teach my class and grade the students' papers. I do what I have to do, but that's where it all ends.

Quit moping. Get it together. You're crazy. It will be good for you. Just do it. you're selfish. Let it go. Stop living in fear. It's your own fault. If only you'd...

all these words swirl around me, in my own head and spit out by others. Some mean well, some are angry with me. Everyone is probably frustrated.

I am not trying to be like this. Honest to god. If I could afford a psychiatrist I'd go. Though meds, meds, meds. The answer to everything, right?

I just can't help it. Certain painfu episodes play over and over in my head. I imagine people gloating at my pain. I want to hurt somewhere besides my heart. I want to stop hurting. I think I've cried everyday for 10 months. That's like 300 days of tears. I hold my fear so tightly. I was doing OK, maybe up until we returned from Costa Rica and then things - precariously built up - toppled over and I've been stuck under the rubble since.

I don't want help. I do. I don't want someone to pull me from my bed and slap some sense into me, but maybe I need it. I have never been like this before and I keep waiting for it to end. But some of my thoughts don't have an ending that ends well.

If I didn't have my kids - as much as I feel like a crap mom - I don't know where I'd be. Maybe somewhere tropical, maybe dead. They are a buoy. They keep me here, grounded, but also they keep me here. Running away isn't as easy with two lives under your care.

I don't want responses. I don't want to hear anyone cares, I want to be me again. I want the hurting to stop. I want to stop being afraid. I wish for a faith strong enough to carry me through

"Jesus and Mary, can you carry us through this ocean into the arms of forgiveness."

Singing you Away

2011-08-19T14:13:00.000-07:00

So, at long last I have finished my master's thesis. It was entitled "Singing You Away:An Examination of Community and Self Discovery through Illness Narrative," and, for the most part, it was about all of YOU. Well, "YOU" being the generalized CF community that actually reads this blog. In honor of YOU, I decided to share a few blurbs here with YOU. The piece is going to be published by the University library as I think is the case with most Master's Theses (thesises)(?) (sp) and I am going to try to work it into a book length piece for publication. (so in other words, this shit is copyrighted, yo).

All I can say is thanks, because without YOU this piece would have never come to be. Chances are I'd still be writing about Edith Wharton. Not that that's not OK too, but this was more fun.

This is from the "context essay" - the academic part of my project:

"For most of my life I’ve had trouble revealing to people that I have the disease Cystic Fibrosis (CF). To any more than family, close friends, or medical staff, I’ve allowed the disease to remain tucked away inside of me, a secret I’ve been ashamed and embarrassed to admit. Even to those who knew about the disease, it was often unspoken; I only revealed my medical history if it was pertinent to the situation at hand. I denied that part of myself and hid it from others as well. Despite harboring the secret of my disease, I still often felt I had a story to tell. The hiding of the secret was, in fact, the story. I wanted to write a personal narrative which explained how, with the help of friends I made in the online Cystic Fibrosis community, I was able to release much of the embarrassment I felt surrounding my disease and accept that the illness was not a shameful secret, but rather just another part of who I am, no different from the color of my eyes or status of my belly button. The purpose of this essay is to find a place for my personal narrative, “Singing You Away,” within the academic conversation on illness narratives. I used two key terms from Arthur Frank’s work: the “cumulative epiphany” (Rhetoric 46), which is a narrative form in which the author comes to understand that the illness has always been a part of who he or she is, and the “dyadic body” (Wounded 35), a word Frank uses to refer to the shared experience of being bodies, in this case bodies who are afflicted with some kind of illness. I will examine these concepts later and refer to them throughout this essay as a means to examine the development and analysis of my personal narrative from a more theoretical perspective. Using these two concepts, I demonstrate how my narrative describes the development of my identity as a person with a disease and how, once I was able to accept that part of myself (particularly with the help of my online friends), I was able to use the medium of narrative to reveal my secret and assimilate the disease into my identity."

"I set the narrative up in short vignettes that pick out specific moments in my life that I felt could best shape the story. My aim was to show how I was born with this disease, rebelled against the life and medical prognosis that comes with a disease such as Cystic Fibrosis, and finally found some kind of peace with myself and the disease through the interactions I had online with other people who also had CF. These online interactions later play a large role in the way I hope to enter my voice into the genre of illness narrative, showing through my personal narrative the way that the internet changes the overall concept of illness writing. Narratives are now being written in real time, updated and changing daily through blogs and social networks as people update continually and interact with others as the disease is happening to them. Through these networks and friendships my personal narrative was shaped. These relationships helped to form my identity as a self with disease because as I read the continuing and ongoing stories of others with my same disease I could relate to them in a way that was not available to me at any other time in my life, either because I rejected it, or because the cross contamination risks of the disease were too great to take the chance of meeting in any other way than in a virtual reality. The relationships served as a mirror of sorts whereby I could compare my disease and myself to others with the same disease and examine how others dealt with their illness and disability, constantly comparing and contrasting that to my own reactions and experiences"

"The idea that life was to be shortened by CF has been a lingering stigma for my entire existence and was a motivating force in my narrative. I wanted to give voice to the deviation my story took as I struggled against this prognostication. I rebelled against the prognosis of CF long before CF made much of an appearance in my life’s narrative. I was rebelling against this “failed prognostication” that had shadowed me for years. In this memoir I’ve presented drug abuse as the primary mode that gave shape to that rebellion. Certainly substance abuse was not the only way I rebelled against my disease, but it is a serious way, and it is an intriguing way given the dire importance good health has in our society, especially when one has a life-shortening disease. Substance abuse is certainly not an issue of childhood and the fact that I was able to get to a point in life with this disease to be able to abuse narcotics is a rebellion of sorts against the disease and the prognostication of where that disease would take me. I should never have been healthy enough to even think about such a lifestyle. I did, however, and then even lived long enough to be able to look back on that time of life and put it to paper. This narrative itself is still a form of rebellion against the prognostication of medicine and society on the illness itself."

This next part is from the personal narrativepart of the project,or the "creative aspect." This is revealing more about me than I probably have to some of you - to others, you know all about this stuff cause you lived this life too. I hope the reader won't judge me too harshly based on how I acted 16 years ago. I am editing slighty, you know, just in case.

1995
She takes a swing and she can’t hit, she don’t mean no harm, she just don’t know what else to do about it
By my senior year of high school I had a handful of friends who had their own places. Bald Jay’s was next to a roachy pizza place on a street infested with hookers, winos, and other denizens of the smarmy South Bend street life. I’m amazed with our bravado in those days. Walking down streets not meant for suburban white girls, preening for the men who cat called, asking for drugs, going into the homes and cars of strangers to get them. I can’t believe we were never hurt; I think of how many ways we were hurt: taken advantage of, exploited, used.

I met Seth eight months after I’d decided to become a born-again virgin. I’d begun to grow weary of the meaninglessness in my interactions with boys. I was seventeen, heading soon for college. I wanted a fresh start; I wanted love. I had succeeded in creating a persona of wild,bad girl, but I started to envy my friends who had boyfriends who bought them flowers and took them on dates. I had visions of a relationship like the romance between Lloyd Dobler and Diane in "Say Anything," of Romeo and Juliet.

That last summer before college, my girlfriends and I had plans to follow the Grateful Dead. We wore second-hand clothes and ate lots of acid. My hair fell to my waist. I carried a one-hitter and a camera in a straw tote bag. I stopped shaving my legs. We were eighteen and free. It was the summer of my first true love.

I remembered Seth from high school. He had twirly eyes, like a cartoon character. I would see those kind of eyes only one time more in my life, in the eyes of a meth head in New Mexico, ironically also named Seth, who wanted a ride. The eyes would scare me. Seth’s eyes scared me. I’d heard the rumors: they all said he was wild. I’d never really paid him much attention until one summer evening at Bald Jay’s.

Like most teenagers’ first apartments, Bald Jay’s was sparsely furnished, the sink always full of dirty dishes. Band posters were tacked about the walls and the company was transient. People who weren’t even really friends with Jay would come by, his house one of the few to hang out in where there were no parents present. Erica and Lola, my closest friends, and I were frequent visitors, being friends with both Bald Jay and one of his roommates. We’d flounce into Jay’s unannounced in our gauzy skirts and sprawl across his couch assuming that our presence was always a welcome addition.

One night Seth slinked into the house and fell into a threadbare chair across from me. His energy was like honey, syrupy sweet. His hair was a tangle of auburn curls. He was shirtless, his chest flat and hard, bare. His army pants were pulled so low that the V of his pelvis was exposed, soft auburn curls peeking from the waistband. He rolled a joint, meticulously folding in the corners of the onion skin paper to make little pockets, then tapping out a sprinkling of cocaine from a magazine folded bindle he kept in the cellophane of his cigarette packet. I wasn’t even sure if he was aware that I was there. We all smoked: Seth and his friend Jake, Bald Jay, Lola, Erica, and I. We passed the joint from fingertip to fingertip, the raucous vibrations of Phish’s “Run like an Antelope” wafting from an upstairs bedroom, the windows open to the humid summer air and the rattling mufflers and loud voices of the downtown street life.

Soon after, Lola, Erica, and I went for a walk on the East Race, a pleasant boardwalk area built around the St. Joseph river. Our gypsy chains jingled, our patchouli drenched skin was soft in the lamplight as we discussed Seth and the cocaine laced joint and whether or not we thought we felt any different from it.

I decided to call Seth “Jim Morrison” in code because of a picture I’d had of the singer on my bedroom wall with the same wild wavy hair and low riding pants. I recruited Erica to help me track him down the next day. We found him on Van Buren Street, in the heart of run down South Bend, lying on a mattress in our friend Ray’s bedroom, smoking a joint. The four of us drove to Rum Village, a park and nature preserve on the southwest side of town, where we swung on the swings and smoked a joint in the woods. Seth massaged my shoulders from the backseat of my car as I drove us back to Ray’s and asked me to come over and go in his hot tub that night. I agreed and snuck out of my house via the sliding glass deck door to meet him at the end of my driveway. He picked me up in his white Honda Civic, a cigarette in hand, Jane’s Addiction on the tape player. My legs glimmered, slathered in the smoothness of Bath and Body works liquid talc....

It was an intense summer. We watched Perry Ferrell shoot up and pretend to be Dr. Rockstar in The Gift. Seth wore my dresses and let me put make-up on him. We had sex in the car, behind a church, in my mother’s house and his father’s, in the woods, in bathrooms. We took Xanax and drank microbrewed beer. We played pool and went to the beach. I was in love. Then he kissed a girl named Vanessa in his hot tub. And the boy I should have let go, of moral failing and intense addiction, I began to cling to even harder. I sobbed the night before I left for college and ate three of my mother’s Xanax bars. My heart was breaking.

When I got to college, still dating Seth long distance, I stopped smoking pot and started taking aerobics. I had the realization that no one was going to look after my health except me. I still drank, took hallucinogens, and did cocaine when we could find it, but I had this grand idea about saving my lungs. I didn’t tell anyone why, I just told them I was “allergic” to marijuana. This was an acceptable answer.

I hung out with hippies, bike thieves, druggies. Of all the people I was friends with in college, only a handful ever finished. Of those who did find success, many took the same roundabout path that I found myself on. The lure of Phish music and freedom was so enticing that working the midnight shift at the BP didn’t seem like a bad gig if it meant you could get all fucked up after and have no responsibility in between. I envied those people. Though I dallied in these fringe groups, I still felt a great deal of pressure to succeed both from my family and intrinsically. I was not going to fail at anything. So I compartmentalized. I could be smart; I could make Dean’s list and still stay up all night on cocaine. I further compartmentalized my CF. I’d left behind most of the people who’d known about it from my childhood, and told fewer and fewer people. I didn’t even tell my college roommate, Maria. Despite being friends in high school, it was several months into living together that one day she noticed me taking medicine before eating and asked me about it. I had no choice except between lying and telling the truth. I opted for the truth. I was embarrassed and played it off as nothing to worry about. I don’t remember telling her about the life expectancy, though I know I often threw that number in, especially as I got older and surpassed it, as a means to prove how unaffected I really was by the disease. A few years later I recall asking Maria about that day and what it was like to live with me during those years.

“Yeah, I do remember when you first told me that you had CF. It was at the very beginning of living in the dorms at BSU. Ryne and I were both there. I think the reason it came up was not about coughing, but as a way to explain why you were taking pills before eating. It was the first time I had ever even heard of CF,” she recalled as we mulled over a bottle of wine.

“I’m sure you told us all about it medically and stuff, but the part I remember most was you saying that most people don't live past 16, which sort of freaked me out. I had never really dealt with the mortality of a close friend. Eighteen is quite an invincible time for most.

“I remember after knowing, feeling protective of you when you would cough... I remember feeling pissed at people who would be like ‘Whoa dude, are you okay!?’ Or, ‘Damn girl, have another cigarette!’ Shit like that, but I would use my lack of concern to try and show them that they were dumb for asking: they should do the same. Looking back, I guess they weren't assholes, just concerned, but I felt sensitive to what I viewed as tactlessness and sort of a MYOB situation.”

Despite not smoking and exercising, two purposeful choices aimed at taking better care of my lung health, I still lived hard. College is a rough time for many coeds; binge drinking and crappy eating are commonplace, and I was no different. I was also warped into an increasingly codependent first love, something akin to a toddler in a Christmas tree shop: excitement, bright lights, and inevitable shattered glass.

Spring semester, Seth followed me to BSU and lived in the same residence hall on the floor below me. We spent most our nights in one another’s rooms. He peed in an empty two liter the nights he spent with me; I lined his trashcan with a plastic bag the nights I spent with him. Though I was modest around his roommate, Maria, Seth, and I were all comfortable with one another and often the three of us slept nude, Maria in her bed, Seth and I crammed into mine talking late into the night. There was something uninhibited about being so uninhibited and I found us all quite bohemian.
I wrote Seth’s papers for him, he rode me to class on the front of his bicycle. For spring break we headed to the Gila Mountains of New Mexico and the peaks of Breckenridge, Colorado with a slight detour to Palomas, Mexico to purchase and smuggle in valium. We both fell in love with the Southwest and vowed to return.
Jealousy had slyly sunk its fangs in our young love over the course of our time together. Less than a year into the relationship we’d both cheated on one another; it’s hard even now to understand why we continued to hang onto each other so fiercely. There was a sexual possession between us that I had never felt before and I wanted no other woman to have my man. It didn’t occur to me then that I wasn’t holding Seth responsible for his transgressions....

Seth transferred to the University of New Mexico the next semester. He and I visited one another each month after he left, once each driving ten hours to meet in Oklahoma for the weekend. I began the paperwork to take out loans to transfer to the University of New Mexico that spring. My parents were vehemently against the idea, Seth becoming nothing more to them than an impediment to my future successes. They truly feared that I would elope or become pregnant by him and bind myself to him even more fully than I already had.

My father, Seth, and I packed up my Toyota Corolla in January of 1997 and drove through the worst snowstorm the southwest had seen in years from Indiana to Albuquerque. My father had succumbed to the fact that he was helpless against me leaving, but he’d at least get me there safely.

The temperature was in the negatives as we drove through the Midwest. Not far out of Indiana we suffered a tear in the sidewall of the tire. Seth and I stood helplessly aside as my father unpacked the entire trunk of the car and attached the spare with his bare and frozen hands. The blowing snow and slippery conditions of the roads as we headed farther south convinced my father that only he should drive and we listened to him lament, “This isn’t good, this isn’t any fucking good” as he inched the car along the Texas highway.

New Mexico quickly became an exercise in addiction. My grades dropped to B’s. Retrospectively, this should have been a warning sign to my parents that something had gone amiss, but a B was still an acceptable grade and no one worried much. The truth was Seth and I spent some days awake on cocaine and some days in a groggy stupor of heroin. My resolve to help him with his addictions dissolved hours after I put my father on a plane back to Indiana.

We made friends with another couple and they were among the first new people I told that I had CF in years. I had no other answer but the truth for why I coughed so incessantly sometimes. Cocaine constricts the nasal passages and some nights the post-nasal drip would cause me to cough and gag without end. As with Maria, Seth was protective of me when someone joked about my coughing. He may have been the one who told them, in all actuality, as a response to some joke such as, “Maybe you need to see a doctor for that cough?”

“What does it taste like?” asked one of the friends. “Is it like when you have a cold?” I had no answer, my sputum always tasted the same; in effect, I always had a cold. I realized that their curiosity wasn’t a bad thing, it wasn’t a force of pity but rather a simple desire to understand. Talking was much easier with the fuel of drug-induced stimulation.

I knew that New Mexico wasn’t a healthy place for me to be. I never saw a doctor when I was there, I did not exercise, I was not eating well. I was clearly abusing drugs. The little cricket voice of my subconscious also knew that starting out my life with thousands of dollars of student loans wasn’t as good an idea as going home and letting my parents pay for my education. Seth scared me as his addiction spiraled farther and farther out of control and I was grasping at twigs trying not to follow him down. It was still important that I remain above water with my school work. The final straw was twofold: a worried phone call from my grandparents one week after we’d unplugged the phone and stayed in bed on a heroin binge, and a family trip to France that was held above me like a carrot on a stick: come home and you can go with us. My choice was made. After one semester and thousands of dollars, I was going back home."

down in the boondocks

2011-05-24T06:40:00.000-07:00

It's kinda hard to type with this monitor thing on my middle finger.

I'm in the ICU getting desentitized to Fortaz. I totally balked at the idea of coming into the ICU, but it's been great - as great as hospitals can be anyway. I mean, I've gotten my meds on time, my RTs were quite knowledgable about CF, and I slept all night - at least until my nurse woke to tell me by BP was 77 over I dunno what. I think it was a fluke. 77! Makes me wonder WTF happens when I sleep at home! Well and I've got all these damn cords all over. Still, I'll take this over the Oncology floor where I was before n.e. day.

So 10-14 more days of IVs is coming my way, but I'll deal. I want to feel good for our vacation which is rapidly apporaching.

That's about all u have to say. I want to go home!

The Cuervo gold, the fine Colombian

2011-05-06T06:46:00.000-07:00

I'm trying to get my husband to seriously take up photography. I think he has a great eye. I've always envied those who haad the ability to take a great picture. I never seem to. G will pick up the camera and retun it with tons of awesome pictures on it and very little effort. He just has a knack.

He'd mentioned earlier this year that he might like to pursue the art, but then that kind of fizzled out. I convinced him the other night to take some boudoir photos. Retrospectively we should have set up a better background setting since I know zilch about photo editing and wasn't able to figure out how to remove some unwanted background noise. But we had to wait until the kids were in bed and by then we were sort of stuck in the bedroom. Anyway, I fiddled about with some of the pictures using my meager editing skills (which mainly consists if having Photobucket's preset editing tools do the work for me) and started a blog for him. I highly doubt he'll ever use the blog himself, but I don't mind being the behind the scenes techie. I don't even know if he's still interested in pursuing this hobby, but it 's fun for me to do this for him, hope he doesn't mind.

My clinic put me on 4 additional days of IVs. I'd deaccesed myself and everything. so I had to reaccess and do the dressing. I love love love being independent with this stuff. I hate being at the mercy of anyone, such as waiting for a nurse to get here to plug me in. My port behaved and I got the needle in on the first try. What I didn't do was actually think about the tegaderm before I opened it. The first TWO packs I botched by not taking the backing off in the right manner. Can you say DUH! So I wasted two packages of that at god knows what price per pack, but I did get everything in, on, hooked up, and ready to rock. Again. Lesson learned on that one though. Wait to actually talk to the doc before removing medical devices. At least I snuck a shower in there.

The yucky virus I had last week has left me with a seething sinus headache. I suppose it could be the weather, spring finally sort of poking its head out and all, but it started the day I got sick and has not let up since. These were the kind of headaches that led to my sinus surgery, relentless head-in-a-vice pain. Another sinus surgery is the LAST thing I want to contemplate, so I am praying it's just something left in the wake of my virus and will fade away or perhaps is from the Tobra or even is just weather related. Anything. I have ptsd just thinking about going to the ENT. My ENT is the nicest guy, but I just can't stand having crap up my nose. Oy.

Lately i feel like such a problem. Sick, tired, fevers, headache, med schedules, etc etc. It's bumming me out a bit. We're taking a trip in June and I really want to be healthy for that, so I am at the point of do what whatever I need to do to be better for vacation, but wah! We'd talked briefly about going to Peru on our trip. The cost was too much of a hinderance so we chose a different locale, but when I was inquiring about the elevation, several of my non CF friends who had been there mentioned that the elevation was an issue and several had altitude sickness. One friend told me that she and her sons felt ill for about 4 days when first heading up toward Machu Picchu. She said little movements left them feeling as if they'd run a marathon. So part of our discussion was if I would need to take oxygen with us on that trip. I've never contemplated that before. But I have been very SOB lately, even when I'm at baseline, and so the thought of having a crappy time because I can't breathe didn't sound good at all. Still, I had this vision of climbing a mountain with my 02 strapped to my back and I was really floored. It was hard to assimilate that vision with any kind of reality. We're not going to Peru, so it's now a moot point. Still, the reality of my limitations really hit home. We're not going anywhere that I think i will have a need for 02 now, though the Peruvian antidote for altitude sickness is mate de coca, and I was really looking forward to indulging myself on at least that small treat!

I think I thought that if I surpassed that median age something magical would happen. But I've surpassed the median many times. I'm coming up on it again soon (I hope), and all that's happened is that my body has very much been reminding me that aging in the face of CF won't be some defeat of the disease. It will be a constant fucking struggle, Ante up.

2011-05-05T09:18:00.000-07:00

I lied. Reaccessing today for 4 more fun filled days of IVs. Boo. At least its just the one m
ed, right?

this is the end, beautiful friend, the end

2011-05-04T20:05:00.000-07:00

Today has been a day of endings.

I finished up my last dose of IV Tobra about twenty minutes ago. This is the only time I have ever been on just one IV med and man, is that cake! I am also on inhaled colistin, so it's not like I am on only one med, but still, one infusion BID = sa-weet! So that's done.

That's not all as pie in the sky as I just made it sound, since this was an experiment to see if it would help me before I need to go in and get desensitized to meropenum. er, I guess it's Imipenum. Either way, I haven't heard much good about either med, so I am not really looking forward to that and honestly, I only feel maybe 70% better. I got a stomach virus in the middle of this course of meds that left me with a 102 fever, vomiting, and all together miserable. I feel that it set me a back a bit. Once the fever edged over 100, my heart started beating really hard and my breathing became very labored. I was acutely aware of this, much as I remember I was with H1N1. There is just a point where it seems that my body really begins to struggle with fevers. Maybe everyone's does, I just don't have a whole lot of experience with fevers.

I was thinking today as I was infusing my last med about where I am with my health. In 2007, I weighed 103 lbs and had an FEV1 of 50%. I did no treatments up until that point. Well, no, I guess I had my Vest, because I know I got that soon after my daughter was born. I remember because my boobs were full of milk and it hurt to Vest at first. But anyway, a year later, that's where I was. I feel it's entirely possible, had I not changed that road I was on, that I may not even be here today. Who knows where my health might have been and then to have suffered through the Swine Flu epidemic? yipes. I feel certain it was the grace of god and lungs that cooperated that that didn't hurt my body worse than it did, and I know I lost some lung function over that.

Anyway, I guess that's neither here nor there because I did get compliant and I am still here and I do have a baseline that now hovers around 70 and that is terrific. So I have to remind myself when I reeeaaaalllllyyyy don't want to do IV set #2, complete with some hospital time, that that's just how you have to play this game. If i want to be here for a while longer, I gotta play these cards right.

I really want to be here to see my kids grow up and have kids of their own. I was reading a book to my daughter tonight about a kid that got an ugly knitted sweater from his grandma and I felt deeply how much I want to share that part of life with my kids. It's a realy hard pill to swallow that I might not. Sometimes I can get kind of flippant and even obstinate about it when my family spouts off uber positive thoughts about how possible it is for me to live for a long time more. I feel they are deluding themselves and need to realize the stats are not in my favor. But the truth is, the deep dark truth, is I really would like to be around for a while longer. Facing your own mortality is not easy. I know I am still far enough removed from dying that it solidly remains a "what if" idea. Many people I know are already in end-stage lung disease and I am sure their outlook and wisdom would greatly differ from my own.

I'd come up from the basement earlier tonight when I realized I left the phone down stairs. I asked my son to bring it up to me.
"I'm too tired to come back down" I told him.
"From your thing?" he asked, pointing to my chest. I said yes, that sometimes what's meant to make us better can wear us down a bit first. He called back up the stairs that he hoped they would find a cure soon. This is my son. Somehow squashing my parents' optimism about a cure doesn't seem as unkind as doing it to my son. So I called back, "I don't know that there will ever be a cure, but hopefully they can find something to help me live a long time." By then though he was already immersed back into his Xbox game and I was feeling a little blue.

I digress.

Another ending came as I finished up teaching my 3rd semester in the world of higher learning. I had a failing student complain about me and my "unfair" grading policies to the Dean of my department. She called and asked me if I would be willing to let him take his final exam again. I really debated this. It seemed if I said no, the likelihood of my rehire was small, being an adjunct low on the totem pole. At the same time, I have been trying really hard to be more of a stick-to-my-guns kind of person. What it finally boiled down to was that though I thought that this kid was acting like a spoiled brat, he was entirely capable of doing the work. So to be punitive and fail him based on bureaucratic rules would really be a bit asinine and would probably keep a bright (but slightly annoying) kid from doing something positive with his life. So I let him retake it. It kind of botched up my evening since I had to go in just for that, but he did well and passed the class. So he's done, as am I, for the summer.

I really enjoy teaching at this level. It's pretty unlikely that I will ever go back to full time school teaching, but if I ever do, I am totally holding out to at least get a position in high school. Or even night school, GED. I mean, my dream was to be like "Dead Poet's Society" or something, but it seems I always get thrown in with the lower echelon of studetns, be it skill level or SES or what have you. No matter why, they've sort of become "my people" and I feel I do well by them. So I hope I can continue at this for a while longer.

Finally, in the end of days, I sent my entire master's thesis to my director today. That consisted of 63 pages of narrative and 15 pages of literary context. It took me almost a year to finish it, partly because that's how long it took me, and partly because I had no deadlines and I am working with a very over worked faculty memeber who wasn't always quick on returning my emails and drafts. I am still waiting for her reply, so I may have to edit and revise a bit more, but the bulk of the work is really truly done. Thank goodness! It's such a weight lifted off of me. I will actually get this degree. For a while there it seemed as if it might not happen.

With all that, I leave you with pictures. I just got a new computer and I have a built in camera (so yay! Skype!). I'm only about 10 years behind the rest of the world with my technology. I was just playing with the camera this morning and then again after I finished infusing my last dose of the Tobra.

Enjoy my kewpie looking pictures. (I'd rather be Kewpie looking than Ewok, thank you very much!)

she's a good hearted woman in love with a good timing man

2011-03-23T06:56:00.001-07:00

I love me some "old" country. I use the term "old" loosley, as I mean "old" as even up to the nineties - before country became the top 40 popular, trendy genre it's becoming now. I mean, I saw Faith Hill at the 4H fair in about 1996 long before Faith Hill was known for much of anything. And that's not to say I don't occasionally hear a new song that I like, it's just that tunes such as "Honkey Tonk Badonkadonk" or "She Thinks my Tractor's Sexy" just don't pull on me the way a little Hank Williams, sr. or jr., can or the way Crystal Gayle singing "Don't it Make my Brown Eyes Blue" does.

As a kid my dad used to listen to country music when he'd make us lunch. This was when I was really young. My dad made this sandwich called a "veggie special" in which he took a piece of whole wheat bread, spread some pizza or spaghetti sauce on it, put a little wheat germ on top of that, added some frozen mixed vegetables and then topped it off with a slice of American cheese. Into that new contraption called a microwave it went, and yum yum.

My parents were newly divored and though my dad was definitely the more health conscious of my two parents (hence the wheat germ. We also ate carob, weren't allowed gum with sacchirine in it and visited the Mekong Market where he bought little glass vials of ginseng which he called "Kra-teen Daaang" (sp)), he wasn't as much of a chef as my mother. As we sat at the table and waited for him to make the veggie specials, he would turn the little radio on in the kitchen to an AM country station. I can still hear him singing "Texas weh-eh-men" in a low baritone.

My dad introduced me to a lot of different types of music and for that I am really grateful. He did his Master's thesis on music ethnography in which he wrote about the blues. I assume thisa was when his vast study of music really started. The music of my childhood ranged from the reggae beats of Bob Marley, Peter Tosh, or Burning Spear to the wailing guitars of the Kings: B.B., Freddie, and Albert. Some days it was the jazzy sounds of Gato Barbieri, Wes Montgomery, or Miles Davis. I heard the bizarre sounds of Sun Ra and the melodic Augustus Pablo (I wanted to name my daughter Augustus or August if she was a boy and call her Gus. Augustus was influenced by melodian player Augustus Pablo and August was influenced by the Grateful dead song "Wharf Rat": "My name is August West and I love my pearly baker best more than my wine")).

My dad was a big Beatles fan so there was no shortage of them or the Rolling Stones or Cream and other music of the sixties and seventies. Other names that come to mind are Bloomfield Cooper and Savoy Brown, Leon Russell, Santana, Howlin' Wolf, and Charlie Parker. I remember on Friday nights we would go to dinner and then rent a movie (the VCR was also a new thing at this time). We watched Movies like "Bird" and "Crossroads." Clearly, my childhood musical education did not suffer. My dad was making mixed tapes from his record player waay back in the day. And so, in the afternoon we'd listen to country music.

When I met my husband he introduced me to a new subculture, one I had not really been privvy to in my middle class (maybe even upper middle class? I'm not sure where the class lines divide, really) upbringing: that of the "working man."

My father was an academic, my mother in social work, and my step mother a physician. My grandfather was Vice President of an Insurance company on one side and the other worked for a short time as a Foreign relations represenative for a local company that made materials used in WW II. That grandfather was from a small farm community rife with Amish called Nappanee. So for all our "worldliness" (my grandmother was the daughter of a diamiond cutter and grew up in South Africa) there was always that tinge of good old farm folk within us. Still, I knew relatively nothing about the world of the skilled trades and construction. My knowledge of construction was basically the stereotypical guy eating his lunch from a metal box sitting up high on the beam of developing building and whistling at women as they passed the site. G showed me that most of what I sterotyped wasn't true and I found great comfort and happiness with his friends and family. It was an easy integration of lifestyles and we found enjoyment on both ends of our spectrum.

G came from a family of brick layers. His grandfather, father, and both brothers were in the trade. G branched out and chose plumbing/pipefitting rather than bricklaying and much of this was due to the training he recived when he was in the Navy. His maternal grandfather had also been a Navy man though I don't know what career he had after that.

When I met my G I wasn't just introduced to this "blue collar" world, but along with that some new music. I started listening to Waylon and George Jones, Hank jr., Lynrd Skynrd, The Allman Brothers and The Marshall Tucker Band: Outlaw country and Southern Rock. It wasn't that i didn't know who most of those musicians were, only that I hadn't really listened to them. My dad had once forced me as a teenager to go and hear The Charlie Daniels Band one year when they came to the county fair. "It's Charlie Daniels, man!" he exclaimed. "You can't miss an opportunity to hear Charlie Daniels. I went reluctantly, but groused the whole time.

By the time I'd met my husband at age twenty three I'd formed my own musical taste, influenced by my upbringing and incorporated with my own preferred styles: folky rock, alt-country, and folky punk.

On one of our first dates my (not yet) husband and I went to a concert to hear Deep Purple, Ted Nugent, and Skynrd. Though not much of a fan of Nugent and Deep Purple, I really enjoyed hearing Skynrd. It wasn't the original band, but at that time there were still three of the original members. I'd been listening to quite a bit of classic rock in the time before I'd met my husband and had taken quite a liking to the Eagles and Bob Seger. My husband had a motorcycle when we met and Seger especially seemed to go hand in hand with this new guy: my pipe fitting Harley riding (soon-to-be) husband and this very exciting new romance.

After a few years together and my husband and I getting an ipod, I really took to the outlaw country. He had a lot of CDs I had never even heard until they were downloaded into the itunes. These songs were of hard working, hard drinking men and their tough and loyal wives. I felt as if G and I fit right into the mold of the stories told in those songs. Especially after out daughter was born and I was no longer spending as much time outlawing it with him as I was home with our baby. I truly felt I was becoming the like the women who sang and were in the songs.

The sad thing is, as much as I enjoyed it, I can't really listen to that music much any more. It has become too painful. I don't want to be married to an Outlaw and I don't want to be a woman who is singing about fighting for her man. It's funny that Hank Williams jr.'s song "Women I've Never Had" used to make me smile. Now it sort of makes me sick. "Jackson" makes me angry. Hearing "Whiskey Bent and Hellbound" is liable to give put the urge on me to put my fist through something much like Loretta's, "Fist City," though I can't listen to that one much either. Willie's songs still pull on my heart strings but they hurt too. I don't want to be the good hearted woman any longer.

I've been searching for songs that speak to who I am and where I am right now. As a teenager I used to play a game where someone would give me a word and I would come up with a song lyrics to go with it. I always said "life is a medley." Nowadays my motto has been more "music is god" and I've taken to letting the shuffle on the ipod teach me whatever lesson I am supposed to learn for the day. I'm trying to believe that things happen as they should and that I can only control so far as the end of my nose. That's left me adrift in the musical world. Despite all the music I've been introduced to in my life, I can't find a fit right now. I don't quite see myself heading into the Chritian rock arena though I suppose a song called "In His Hands" could work for me if it was perhaps renamed to something like "Wrapped up in the Energy of the Universe." and I bet that song exists somewhere too, though it's probably being chanted by a bald New Yorker who dropped out of Julliard to live in a Indian Ashram while his grandmother paid off his student loans for him.

My point about the music may have been lost, but what I'm trying ot say is that I am adrift right now and I am looking for an anchor or an identity. The previous nine weeks have made me reevaluate who I am, what I believe, and how I see myself. I can't find a song to identify with right now.

I am starting to believe that there is purpose in life that isn't always obvious as events are unfolding (maybe I always believed that, but it seems really obvious to me now). I'd like to think that my days spent as the faithful Outlaw wife had meaning and that the catastrophe that unfolded around me two months ago might just have been the answer to my prayers (and how fucked up is that anyway? if everything happens for a reason then the universe is one ironic fuck up of a place). If this is true, then I hope at some point I can listen to Waylon and Jessi singing "I ain't the one" again without breaking down. that I might once again enjoy crooning along with Hank about my wild friends that have settled down because I will be one of them. I may not identify in the same way with the music, but I won't have to shut it or certain parts of my life out of my mind because of all the hurt.

I'd like to imagine the broken pieces of my life settling into a compact pile of debris that's busy making diamonds under the pressure. If life happens as it should, and I can imagine a celestial hand holding me gently through it all, then I know every time things seem the most dire I will be eable to unearth one of those diamonds and find the beauty that comes from disaster.

If it happens as it's supposed to, then I can still hang on to Willie crooning, "If you had not fallen then I would not have found you, Angel flying too close to the ground." and all will not be lost with who I was but only that more is to be gained with who I am in the now.

(I totally apologize if this isn't all that coherent. I've worked on it off and on all day amid interuption after interuption and I just want to be done with it - so off to the internets it goes!)

I heard the news today oh boy

2011-03-04T04:53:00.000-08:00

Yesterday my husband and I did a "Day in the Life." Well, mostly I did it, but he was in on the gig. I noticed a few main things while looking at the pics I was going to use:

1) my son is missing from all pictures. I think this is mostly because he left for school before I got up, he came home after school and immeciately went to play with his friends, and then when he was here hanging out, I was busy grading papers and the like. Anyway, sorry mijo.

2) I had clinic today which I took no pictures of. I felt wierd going in to my clinic and snapping pics. I was going to take a pic of the outside of the bulding and a few inside the exam room, like of my sputum cup or something, but I forgot. So I snapped a picture of my PFT print out when I got home. (FEV1 was 72 and I hadn't even done a treatment yet that day, so that's great (though 25/75 was 26, so clearly there is a big discrepancy there and that's where the treatments are really making the difference (the highest I've seen that in years is 39 and I think that was post IVs)).

3) I went out and had a cocktail with a friend and didn't snap any pics there either. It would have been proof I actually do have IRL friends! I'm not the cyber loner I come across as. :) I'm just a picture loser. But she doesn't know I have this blog and I wasn't ready to explain it yet (she does know I have CF though), so just enjoyed my "pom peche" martini and let the camera rest.

Point being: lots of holes in this DITL, so I guess in a way, it isn't represenative of my life fully at all. C'est la vie, n'est pas?

oh, and 4)I might have a broken nose. The baby I sit for head butted me last week. You can see the line where my glasses hit against my face and my nose is pretty swollen near the bridge. It's ooogly. I surely wasn't thinking this was going to be my most beautiful day when I decided to do this DITL!

Gregg is up and getting ready to start the day's project while I take Miss M to school: tamales!

Miss M busted trying to feed the dog cheerios.

This is how I look in the morning. With a busted face. sca-wee!

Off to school!

Picking up cumin, chili powder, black pepper, and some candy (not for the tamales, for mah belleh).

corn husks a-soakin'

cerdo tirado!

We had to set the tamale makin' mood

sneaking a pic of my man lathering up

picking up Miss M from school. I think my car needs a wash.

Nothing sweeter than seeing the preschoolers coming out of the school doors. Melts my heart everytime.

cleaning up puppy pee. When will he be trained??

My girl

Posing with my tamales before devouring more than I want to admit to

Hot tamale baby! Who knew food would be such an important part of this day?

PFTs

Gregg and his pup

The pup. Gregg took this pic. He is a far better photographer than I am, but I can't get the camera into his hands enough.

Trying to get Slugger to wake Marls from her siesta

"I don't wanna get up!"

The dog says, "Why do you people always make me do the dirty work?"

Back to sleep for a bit.

I told Gregg to take a picture of me that captured his love for me

This is it: the picture of love.

My chores. Laundry. I don't mind putting it in the washer, I don't mind taking it out. I HATE folding it, and I ABHOR putting it away. Give me a toilet brush any day, seriously.

Getting ready to have a cocktail with a friend Hair down?

Or up?

The meeting place for the alcoholic debauchery.

I came home and Gregg and his friend were watching youtube videos. The friend pulled up some beheading clip. I told G not to watch it. I told him. He watched anyway and was disturbed and upset for the rest of the night. Sometimes I have to say it: I told you so. I did not watch nor listen to such a video. Just thinking about it makes me ill.

Face washed, contacts out. Back-to-normal Shan.

Trying to get a pic of nekkid G. Undies are close enough. He might kill me for posting this. It may disappear.

good night moon. good night dog.

scrub a dub dub

Gregg and I taking a nighty night pic

I told him we should make out in front of the camera

we were laughing about this and I started to cough when he went to take the pic so I covered my mouth - partly out of polite habit, partly because I didn't want an ugly red faced coughing pic on here.

I told Gregg to kiss me. This was his reaction.

Got him to smooch me anyway. <3

and if you're somewhere out there passed out on her floor,Oh, Joey I'm not angry anymore

2011-02-16T09:12:00.000-08:00

"if you believe that feeling bad or worrying long enough wil change a fact, then you are residing on another planet with a different reality system"(Dr. Wayne Dyer, Your Erroneous Zones).

When should we detach? When we can't stop thinking, talking about, or worrying about someone or something; when our emotions are churning and boiling; when we feel like we have to do something about someone because we can't stand it for another minute; when we're hanging on by a thread, and it feels like that single thread is frayed; and we when we believe we can no longer live with the problem we are trying to live with. It is time to detach!...A good rule of thumb is: you need to detach most when it seems the least likely or possible thing to do (Beattie, 65).

I've understood the practices of quieting the mind, detaching, watching the thinker etc., for some time. I even fathomed that maybe I was slightly enlightened about the world because of all the knowledge I had. The truth is, I know nothing. I have truly been humbled by the recent events in my life. I've never been one to serve up platitudes such as,"It all happens for a reason," or "God has a plan," but suddenly I feel like perhaps I can abide by the idea that there are no coincidences.

I suppose in any time of our lives when things seem deep, dark, and dire, we try to search for some sort of meaning in it all. Isn't that what Viktor Frankl wrote about, Man's Search for Meaning; from the murkiest of places we can find some sort of salvation (and I don't mean that in a complete Christian sense, but whatever floats your boat)?

So here I am, clamoring out of this fucking hole I fell into and I am searching for some sort of meaning in it all. My mind constantly bubbles with "what if," "if only," "I should have," and "why why why?" This thinking is getting me nowhere except for more mired where I am, stuck and miserable.

So the idea of detachment is one I am trying to get into. And in that, I feel that I need to start learning how to let go of fear. Once I am able to quiet my mind for just a few moments (not easy), I can actually see, smell even, the fear steaming out of me. I live and breathe it. I have often believed if I was diligent enough with my worry that I could "protect" people. I had to be diligent, because one failed moment of forgetting and BAM! something awful might happen. DOes this make me sound nuts? Well, I think maybe I am.

It makes me cry when I type this that I feel I've found the place for answers. The least likely place (I thought). Alanon. yup. My mom convinced me I might just give it a go, and I did. I walked in the first night ready to spew the story if my vile fucked up life all over everyone there. I wanted to feel better about my fucked up life because they all had a fucked up life too. and they did. so many of my feelings were validated: wishing death on a person (now you've seen my true evil nature), driving down the road and thinking of never going home, blaming myself for every little thing. Except, some people there no longer saw their lives as fucked up, even if they were living in an active alcoholic home (which I am no longer. Mi esposo tiene one month sober!). They had discovered ways to live with some medium of peace despite. Not without struggle and work, of course, but achievable.

I was raised Episopalian though I officially stopped declaring myself Christian around 2001 when my step sister was killed in an accident.

When I look back at the major spiritual struggles I feel I have faced in my life, I see three. Two followed a death and the third, this most recent also follows a death of sorts - the death of the life I thought I knew before January 14th of this year.

In 1994 my nine year old cousin was killed in a boating accident. At the same time I had a pretty good relationship going on with pot and older boys. Lots older sometimes. After my cousin died I started to fear for my own mortality. I spoke with the priest at my church, began to read daily prayer books and really immersed myself in the faith I was raised in. At the time, this broght comfort and - meaning.

Then, right before my sister was killed I'd begun to study yoga and more "new age-y" teachings. I looked into the ideas behind cosmology and quantum physics, the Gnostic bible. I could no longer blindly believe in "god" as I knew it. I had never, even as a child, been a big Jesus person, but always had (and still do) believed in God. I just started to change my ideas of what god meant. I wasn't sure where I saw meaning any longer, but I knew I wasn't finding it in the pews at the church I was raised in. This lasted until recently.

I have not changed my idea of god. I haven't started bible thumping or anything or the sort. I have just allowed myself to believe that my god might actually have the ability to control things better than I can, so why not give up the fucking fight for a while and try to relax?

I cannot change ANYTHING - what happened in the past and what may happen in the future. I don't mean this as complacency, and this is somewhat of a new uniform I am trying on here. The ideas behind AA and Alanon are a nice combo of the religion I was raised in mixed with the principles and practices I found worked for me when studying yoga and other Eastern spiritualities.

So I won't start prosthelizying (sp), I swear! I am not some serene person walking around praising god and letting the universe lead me where it may (at least, not yet). But I want, want, want nothing more than a little bit of inner peace. I am exhausted by living right now, but not ready to let go just yet.

All that said, I have one confession to make. Should I stumble upon a certain someone before my metamorphisis is complete and my anger and rage have subsided, I am going to hock a green pistachio CF pudding loogey on that bitches face so fucking quick she won't know what hit her pretty litte bitch eye. Well, maybe I wouldn't. But I enjoy the fantasy.

so yeah, there is still work to do. :)

only broken hearts can sing

2011-02-06T20:50:00.000-08:00

I have a new reader. Someone very special. I can't say how thrilled I am with that. It's the smallest of things that often mean the very most. Thank you; thank you for seeing it was important to me and caring enough to take a peek.

I'm hoping for a sign, pray that I'm anything but fine

2011-02-02T20:50:00.001-08:00

They say ("they" being my grandma's friends...as in "they say" you shouldn't do this or "they say" you should always do that). So, "they" say there are 7 stages to grief.

Once I realized that grief was as good an explanation of any for what was happening to me, I started to actually pay attention to what was happening. Being academic and somewhat of a nerd can be helpful when you're so caught up in the hornet's nest in your head and car wreck of your heart that you need a moment to regroup. You do that by being a nerd. You read books on your situation and take notes; you dog ear pages and refer back to other books you've read for a totally unrelated reason. In this research for maning, I came to grief. I was trying to explain to someone that my emotion was coming in waves: sorrow, anger, fear. Each were erupting, sometimes without notice, and often overlapping one another; the push and pull of the emotions playing like the tide on my already damaged heart.

The epiphany of grief lit up as I remembered quoting Joan Didion from her book The Year of Magical Thinking in my thesis (close to being done, but quite railroaded by recent events) as she described the waves her grief came in following the death of her husband.

I realized that in a way, I have suffered a death. The death of all I believed was true up until Jan. 14th 2011. Life now comes in two stages: before and after. If I look at pictures I have to think: was that before, or after? Songs, letters, cards - any memnto, any memory or keepsake all get sorted into those same before and after piles. And from after until now, that was the death. There is no truth in that pile. It's void. It's a mirage, it's shit. So the new pile, the one starting January 15th is the rebirth pile. That's the reincarnation of all that was the before pile. and there isn't much there yet in that new category, a few crumbs maybe, and even those keep getting swept away when the tide rolls in.

Back to grief.

Seven stages:
1) shock and denial
2)Pain and guilt
3)anger and bargaining
4)depression, reflection, loneliness
5)The upward turn
6)Reconstruction and working through
7)acceptance and hope

So of course these stages aren't worked through in the order they are necessarily represented here, and they can overlap; some may last longer than others. I am not even sure that I believed in this kind of thing until I was mired in the muck of it. But here I am, and I am desperately trying to reach toward the final idea of hope. Acceptance too, I suppose.

Denial, that came first. That's been a way of life, we know this by now. But denial lasted all the way up until the proof was being smashed into my face like one does with a dog that shits in the house (we don't do that to our new puppy, btw). The shock was immediate. It was an actual physical response. Cold, shaking, unclear thinking. I still think I am in shock. Sometimes when I think about all that has happened, I find my heart beating fast and I feel I might hypervenilate.

The pain was also immediate and it's an ache to the core like nothing I have ever known save for the death of a loved one. I wrote about this as well when I was writing my personal piece for my thesis and I likened it to a cast iron skillet being wedged into my chest.

I wondered over and over, what had I done? Was this my fault? What could I have done better, different? If only I had done this or that this way or that way. I still wonder. I wonder if I am handling things now the way I should. Nothing I do feels right.

Anger. Punching biting kicking scrathing yelling seething spitting cussing despising hating hurting destroying broken finger broken heart broken promises broken life

Despression, relfection, lonliness. I have been in this stage for long before before and after started. I see now with more clarity why I was feeling depressed. A long cycle of things that started when after started. I have always been a bit lonley. I kind of like it that way. Reflection is a daily occuracne for me. The only difference is now my daily activites are interrupted by reflection in a way that isn' very productive. One minute I am shoveling out from three feet of snow, the next I am lost in thought and sent spiraling back through the previous three stages to the point i feel I am back at the startting place all over again.

The upward turn. Every day is an upward turn. Despite all the downward spiraling, the reeling back, the constant feeling like I am a hanster on a wheel spinning and apinning and getting no where, everyday that we're still here, every hour longer I go than I've gone before without completely losing it, those all feel like upward turns. I am still waiting for some moment when I truly feel some kind of "I see the light!" clarity. It's still very very dark here.

Reconstruction and working through is happening as I type and is all integrated into the upward turn. It's slow like molasses, but I pray to god just as sweet.

Acceptance and hope. This one seems the hardest. Not the hope, but the accpetance. Not only of what has happened but of my role in it as well. Because nothing is my fault. But something has to reflect my responsibility to the life both before and after and up until the rebrith, and then including that as well. I didn't make the choices that were made, but I was there when the making was being done. I have to accept that I wasn't there as fully present as I should have been (unless this train of thought means i need to go back to pain and guilt?) oy.

So, there it is. My journey. I never liked the journey metaphor for my life with CF, and I like it even less for my new life reincarnate. But I'm not sure what other idea works for this except to say that I'm there at that fork in the road, the road less traveled, the road not taken. My prayers are raw and deep and yearning. I'm begging for a sign, for the knowledge that I have indeed opted to follow the right road.

losing love is like a window to your heart, everyone sees you're blown apart

2011-01-22T04:58:00.000-08:00

I feel compelled to write but I'm not sure what I want to say. I've managed to compartamentalize my life in such a way that what I write in one place I don't share in another. I'm not sure what I am ready to put here on the most public forum for my thoughts that I keep.

Most of the readers of this blog are my friends in some other place: LJ or FB or cf2so I make the assumption that the majority know what's going on, at least in some aspect.

I don't have the heart to repeat the destruction that has come into my life, but only to share these words I read this morning: I can only begin my search to serenity when I can free myself from my obsession with others.

I think my life has become an exercize in control and I have no idea how to let go of that. My therapist said I'm working in the state of Bardo, or not knowing. I'm not much good in that state, at least not right now.

I've been a naive and blinded woman to a lot in my life. I've turned a blind eye so many times, it's how I operate - from my CF, to my children's struggles, to my marriage. it's time for this to end.

My heart is broken and from that my health suffers. For days I did not care to get out of bed, let alone try to strap into my vest.

I have tried to live my life by two philosophies: forgiveness and love. I feel my inner grit has been tested profusely in the past few days. I don't know if I'm strong or weak, if I'm forgiving or stupid, if I am loved or used. My head is spinning, heart so heavy.

I am tryin got take some responsibility for living this life of denial, but it's hard. So hard. I'm not trying to be abstract here, I am just trying to work through my feelings. I'm used to easy closure: forgive, forget, move on. Now my anger, fear, resentment, and hurt come bubbling up out of nowhere without notice. I can not control them.

I realized before my counselor stated it that what I am feeling is grief. That came to me as some sort of epiphany. As did the little voice in my head that said, "learn to help yourself," as I lay on my bedroom floor sobbing and begging for someone to help me.

I have to help myself. Two steps forward equals a punch in the face backward. But I can make the choice to get up again, move on, maybe in a different direction than the one that keeps punching me. and if I don't go a different direction, at least I can learn some delf defense so I don't keep walking into the same trap that leaves me broken. Keep my eyes open from now on.

We got a puppy. I'd promised the kids for sometime that we could and I decided that we needed a positive focus as a family, something to bring joy. and he has. While he curls up on my lap I can forget for just a moment. It amazes me how in sync his puppy pant is with my own breath and I want to learn to let him love me. Even if he's just a dog, it's OK for him to love me. Sounds strange maybe, but I am really good at giving love, not so much at accepting it. Baby (puppy) steps.

After the dog I'll tackle something/someone larger, but for now, this pup has given my heart the slight soothing it needed to be able to carry on. Thanks, Slugger.

doctor said he's comin' but you gotta pay him cash

2010-12-09T17:52:00.000-08:00

Part of this was written about a month ago, the rest edited and added upon today.

La clinica.

Today was a strange visit. It was like a test, only they didn't know it. But after my hospital fiasco last month, I sorta wanted to know where I stand in the we-really-do-care-about-you line. To me, I want a doc who actually gives a fuck about me. I know there is a line that a lot of docs try not to cross so that they can see their patients in a mecial and treatbale way without letting personal opinion get in the way. But I think new medicine is hopefully trying to get past that and really see the patient as a person. So I have trouble going to docs who don't seem to give a shit. My rheumatolgist doesn't remember my name when she walks into the room whereas my ENT personally calls me to see how I'm doing. Who do I trust more? Sure, the rheum might be a genious, but she doesn't act like she cares. I guess I am a sucker for heart over brains.

anyway, so I've FINALLY met my out-of-pocket for the year (please pay for the hospital, thanks). So I switched my visit to today from Jan. That gives me, barring illness (~fingers crossed~), until March when I need to be seen again. We are literally drowning in medical bills, so the longer I can push things off, the better.

Anyhoo

(I don't say anyhoo ever in real life, but for some reason I seem to like to use it in writing. I wonder is this means that underneath, I really am the kind of person who would say anyhoo? I imagine that kind of person to be like Marty McFly. So I'm an inner Marty McFly),

my purpose today was to talk about my bowels (FUN!) and ask about what actually happens in my clinic when I go in for a tune up. I have managed - somehow - to avoid the 'traditional' CF tune up for 33 years. I was pondering today just how I managed to do that and I think I was a master avoider and liar. This makes it hard now that I am actually coming clean with how I truly feel. I feel like such a complainer and that people think I've deleoped hypochndria, but the truth is I've almost always felt this way, I just denied it and kept quiet.

Onward ho

So, there was a nursing student with my intake nurse and I totally crawled out of my shell and asked her, while my blood pressure was being taken (155/80 and then 135 over something - WTF is up with that? - I wonder if I was that out of breath coming up from outside that my heart was still racing?? oy) if she had any questions for me. and she did! and we talked about CF for a good 15 minutes (which is a lot in a med office, dontcha think?). She asked about the severity of my disease. I explained to her that while I am relatively healthy for my age, that my genetic make up is really no different than most the other patients she'd seen. I told her that as far as my version of CF and being "mild" goes that I think there is just a line from birth to death that a Cf patient takes (or anyone, hell) and we just all plot at different points on that line at different times.

Comparing my disease at 33 to someones elses at the same age is like apples and oranges. Instead, compare where we are - no matter our age - in the progression of the disease. It seems Cf can be sneaky, holding one person at bay with 25% lung function for years while another winds up vented and dead with a higher lung function in a quicker time.

She asked me what one thing I would want people to know in the medical field and I told her that I wanted people to hear what I was saying and to believe that I know my body. Also, the point of my visit was to establish that I truly need a good doctor/nurse - patient relationshsip established. With everyone farming people out to specialists for every ailment, you see a doc maybe for 10 minutes a year depending on the problem (like my dermatologist).

This is why I push my CF clinic to care for everything they can and will, be it my joints, intenstines - whatever. It's all related to that damn gene anyway, right? I mean, I don't want a pap from my CF doc, that would be awful, but I would like to be able to talk sex or birth control or incontinence without an immediate "let's get you into a specialist!"

It was a fruitful conversation and I felt good not just nodding pleasantly and wishing she'd move on, as is my tendency.

As for my doc. I'm working on him, but after being back in town for about 13 years and seeing him for that entire time, I have come to decide I like him. I hope we can carry our reltaionship out for the duration of my care, be that ending in death or TX (this does assume that he works as long as I live and I don't outlive his retirment. But that's not something to dwell on now, is it?).

But I was peeved that I didn' get much (any) hospital attention. I find myself becoming sort of a medical diva. Well, maybe I'm totally not a diva, but I am willing to be a lot more demanding than I ever was before. I can't let myself get swept under the rug. I don't think docs purposefully do this, there's just too many patients and too little time.

A doc here in town was thinking of opening a naturalist kind of medical center, incorporating herbal remedies, nutrition, acupuncture, yoga etc. with Western medicine. It was going to be a women's clinic. Of course all those natural extras would be out-of-pocket except for those lucky ones whose insurance covered something like that. That in turn greatly reduced the type of patient who would be able to afford such services. I was invited to a forum to discuss what this new women's center would look like, what services it might offer, and what wasimportant to the patient.

I kept lamenting insurance woes and how I fel they needed to fight insurances to try to cover some of these services such as acupuncture because otherwise it creates the inability for such a clinic to truly offer that kind of care to the masses. The concept presented by the staff was that this would be something new and exciting and the patient would be top dog. Without making it available to any who needs it, it just seemed to me like any other money making venture. It becomes elitist. This isn't necessarily bad save for the fact that none of the women present were overly wealthy or could outright afford for these services with any regularity.

The biggest suggestion all the women had on this panel was that they wanted a personal connection to their doctor. Many of them were there because they were patients of the doctor who wanted to open the clinic and were quite fond of him. The thing that irked me was if he was as great as they all put on, why wasn't be present at his own community panel? 'Cause the only person there was the manager or PR person, or whoever she was, hired to help get this thing up off the ground.

Where the hell was this great doctor everyone loved and who was so concerned with our opinions on his new medical spa or whatever? To me that stuck out like a sore thumb.

My goal for 2011 was to write more and be happier. This post may not adequately reflect my happy demeanor.

because blogs with photos are more fun:

Mi hijo last summer

Miss M in the hat I crocheted for her for the winter

proof that I'm happy. really.

cleaning up shop - archives

2010-11-30T09:59:00.000-08:00

I changed my blog roll around taking off the craft blogs and adding some CF ones. Now it is mostly all Cfers of there, so take a peek.

Also, I am going to copy some of my blogs from my mommy blog, "Cool Wool Baby" to this one and then delete that one. I never post on it, but I have a hard time letting go of stuff, thus, the merge. So I will savea bunch of those posts by just archiving them into one post here. Read if you care (or dare) or just pass it on by, just for my own records, mostly. :)

go down easy baby, go down slow

Miss M did not nurse last night. I guess she just forgot, or was too tired, or just thought it wasn't worth her time. I feel like my boobs hurt today, but of course they don't. I had a hard time not wanting to remind her to have her bubbies last night - but this way is better, this sort of mother-led child-led combo. I know I edged her here, but she was the one who chose not to nurse last night and that makes me feel better, really the only tears we had in this entire journey over nursing were the three bad nights when i took away the night nursing, besides that, this kid has pretty much had all the bubbie she's wanted. She never really fussed as I reduced the other feeding which always told me that she didn't really "need" them. We'll see what happens tonight. I can't believe we could really be close to being done?!

I'm just so proud of us. Especially in the second year when society got harder on us, family tsked tsked and made light of my choices (She'll never stop nursing! You'll get baboon breasts! so on and so forth), and I even had a bit more trouble with not sleeping and feeling tied down when I was wanting to be free. But really - 28 months is not a very long amount of time - shorter than most car leases and look what she has gained: a very secure sense of her place with me, wonderful immunties that I have seen get her out of some nasty little colds and just the good ole thwarting of social norms that I love to evoke.

So, she might want to nurse tonight, she might not - maybe next week. I'll let her. I know now we are at the end of the line here. I say a sad, fond farewell to my super powers and my centerfold breasts and magical womanly ability. What a sad and liberating thing, for both of us.

you put your right foor in you put your right foot out

My son has a little boy on his football team who has no feet. He wears prosthesis (prostheses?)that attach to his shins and go into his shoes. Because of this, he isn't very fast and really isn't that great of a football player - understandably. When the kids have to run, he is always the last one.

Often, a few boys will go back for him and run in with him - and when he finishes, the team - and some of the parents - will clap. I remember this from when I was a swimmer as well. If some poor girl...perhaps she was handicapped in some way, sometimes she was just a reeeaaaly slow swimmer...if that girl was very far behind in a race, the spectators would clap her into her finish and cheer like mad when she touched the wall. I always used to give thanks that I was never that girl. And I wondered how this boy felt about the attention.

As a person who thwarted all CF-related attention, I actually felt sorry for him for that, not for his loss of feet, but for the fact that maybe, just maybe, he'd like people to forget he hasn't any feet. To just be treated like a normal, albeit slow, boy. So I didn't clap. I relaize that I can't project my own fears and desires as a Cf patient onto a little Indian boy with no feet, maybe he soaks up the attention and will go on to become a spokesman for the footless, but I do think I can empathize in a way that maybe not all of the clappers can.

Natural birth in a hospital?

I don't think I've ever posted our daughter's birth story - but a comment from my last post (about "The Business of Being Born")made me think I should. Kimberly poses the question - is it possible to have a completely natural birth in a hospital. My answer is a guarded yes. Yes, I did it. How? My delivering my baby 13 minutes after I walked in the door. If you're crowning in the triage room, there is no time for monitors and IVs and the like.

So here is the story of Marlee Sol:

I started losing my plug on Wednesday and Thursday. I wasn't too concerned, as I knew that could happen a while before labor begins. Thursday evening I started getting some cramping and told my husband to keep his phone on when he went to class. I had dinner with my mother and drank a tiny cosmopolitain, thinking that the vodka might ease the cramping and deter labor. It seemed to work, as I went home feeling not much of anything and slept through the night.

Friday October 6, 2006

6:45: My husband's alarm went off and I woke up thinking that I had cramps again. More mucous plug came out. Again I told hubby to keep his phone nearby. He went off to work and I waited for my mom to bring my son home - he spent Thursday night with her. I thought maybe my water broke, as I had some trickles coming down my legs, but I wasn't sure. I called dh (dear husband) back and told him I thought maybe today was the day.

7:20: my mom and ds (dear son) showed up. I told my mom to be on alert that she might have to pick up ds from school, but I didn't tell him anything because I did not want him to be worried all day at school. My cramping was getting worse, but I was still unsure whether I was truly in labor.

8:05: drove ds to school. Now I was sure I was in labor. I almost felt like I needed to pull over as it was really hard to concentrate on driving. I called dh and told him he better come home.

8:30-9:00: in the shower. contractions were getting bad enough that I had to sit down. Dh got home and started loading the car. I didn't want to go. I was forced to hands and knees with each contraction. They were 3 min apart and I could no longer think while having them. It took dh forever to get me to the car. I couldn't walk during the contractions and I was exhausted between them. Dh was getting panciky.

9:10 - driving. I was silent and ocntracting hard. Bumps pissed me off.

9:20 parking lot of ER - I couldn't walk from car. I wanted to get on hands and knees in parking lot - dh wouldn't let me. A stranger brought me a wheel chair but I couldn't sit.

9:32 - walked into L&D - fell to hands and knees in reception area. Nurses came to get me. I barley made it to triage. They wanted to check me for dilation but I couldn't get off my hands and knees. Finally said, "If you want to check, do it like this." I remember thinking that if I wasn't dilated at least to 8 I was going to have to have an epidural, natural birth begone! - I was in that moment that the Bradley Method calls "self doubt" - but she checked and said the head was right there.

9:40 - wheeled in bed from triage to delivery room while still on hnads and knees. I was asked to crawl from one bed to the other but before I could, I had to most animal instinct to push. I started gorwling and pushing. Some one told me not to push. I remember thinking that was an idiotic thing to say, as I HAD to push - and I did. Gave a push in triage bed, crawled to the delivery bed and continued pushing. The head was there (oh, ring of fire, how you burned my body!) and there was the cord around her neck. I was told to turn over so the doc could cut the cord before delivery - I refused and was forced by a nurse to my back. This was the only "unnatural" part of the entire thing, as it made no sense to me to push my baby out on my back. Dh reports me saying, "This is stupid, it doesn't make sense." I also heared a nurse ask the doctor if she wanted to do an episiotomy, to which I remember replying, "Just let it rip." Three more pushes - no tears or ripping.(hooray - just some mild labial abrasions) and...

9:48 baby is out - and it's a GIRL!!!

Mr. Angrypants learns to hustle

My boy is playing football. What a testosterone driven sport. As I watch his practices, the air trills with whistles and deep, booming voices making quips like, "You run like a girl!" or "Maybe you need to go home and take some Geritol," or my personal favorite and all-time standby, "HUSTLE!"

The boy, however, seems to just blossom under all this muscle. He runs as hard as he can the entire time, always trying to be the best. In any other sports he's participated in, this always seemed a little embarrassing to me - in football, it's required.

Though I often feel a bit out of place, I also realize that I was raised by a dad who had a bit of the football mentality and so I do get sort of caught up in the "discipline" and competition of it all. Though more often than not, I still have to remind my little fullback to pay attention to his coaches. For a boy who doesn't always follow directions very well, this should be a challenge as the coaches try to stake out plays with the boys.

Meanwhile, we are practicing right next door to one of the angriest men I have ever seen. His fence borders our playing field and is clearly defined with a sign that reads PLEASE STAY OFF FENCE. No problem as far as I am concerned, though small boys need to be reminded of this a few times - or Mr. Angrypants can come out with his Mr.Angry-pants German Shepherd and yell at them. And while I admit, between young boys hanging all over your fence every week and having to listen to "HUSTLE" being called out every few minutes as 500 POP Warnder football players inavde the field next to your home every week, one might become a bit irate. But the scene I witnessed when this man noticed that a parent's car was covering a bit of his driveway was unbelievable. The man got into his own car and within millimeters was going to back into this other person's car, all the while laying on his horn. After the infringing car had been moved, he got out of his car and proceeded to stare at all the parents who had turned to watch this fiasco. As a teacher and a mom, I know when someone wants attention for bad behavior and that is EXACTLY what Mr. Angrypants wanted - hey look at me, I am a big, bad, mean man with a mean dog and I'll eat you up. I turned away. He then got on his lean mean Harley machine and rolled out amid very loud revving pipes. oy. What a nerd.

The thing I don't get, is, with a field full of football dads - at what point is this guy just going to get his ass kicked? I mean come on, you're risking a lot acting like such a meathead when you are suppounded by other meatheads. Le sigh. We shall see what happens. I really want to study this guy though, but not until I bring my husband with me to practice, being a bit of a hothead himself.

stream of consciousness

I took my son to his first La Leche League meeting today. He was great. I love that he didn't bat an eye at any of the breastfeeding moms and at one point whispered to me, "Mom, do they solve problemes here?" Not to mention that another kid showed up with a mohawk - purple, no less - and so my boy knew he was amongst friends.

The baby is getting her top teeth. She is getting so big. I could almost be tempted to have another one. Almost, I said, but not quite. I am still mourning my loss of freedom a bit. Most of the time I am resigned to the fact that I never go anywhere without at least one, though often 3 children, though every now and then I really, really want to just be alone. And then when I am alone I just want to go home to check on the kids. It is a viscious cycle. I miss going out with my girlfriends as well. My husband doesn't seem to mind my never ending presence at home though...or maybe that's because half the time he isn't even here?

Enough complaining.

Obviously I have no one thing to comment upon today. I think the recent heat has melted part of my brain.

We are going to my husband's grandparents' 70th wedding anniversary celebration this weekend. Seventy years together. I need an array of adjectives to desbribe what I think of that! If we celebrate our 70th anniversary it will happen when my husband is 100 years old. Not likely. Imagine 70 years with someone - anyone - many people aren't even with their own children for that long. Seventy years. I can't even wrap my mind around that.

Hair! Long flowing Hair!

My son has a mohawk. He has been bugging me to let him have one for over a year now. I was hesitant to let him have one last year simply because Angelina Jolie's kid had one and so it seemed all the trendy moms were letting their kids have one too, and I prefer to be a bit ahead (who am I fooling? usually behind) on the trends rather than I sheep in the midst of them....so I said no. But he persisted and I figured what the hell, and took his dad's beard trimmer to his head. We reshaped it with proper hair clippers a few days later, and I think he looks pretty cute. Everyone has an opinion about it though.

I know when I was a kid my parents weren't very adventurous with allowing me to have my own look (sorry mom, it's true) and everytime I tried something new it was met with such huge, often negative, reactions that it wasn't worth the embarrassment. So, more often than not, I chose not to inform my parents of my choices in appearance until after they were done (or not at all): double piercing my own ears in 6th grade; shaving the side of my hair off and dying it brown in 7th grade; wearing the see-through Madonna tank top to the roller rink in 8th grade; red hair in 10th, tattoo in 11th. I want my child to be open with me about what he likes and what he wants to look like. I think it is a good indicator of who he is, and I like sharing in his metamorphisis with him.

I find it fascinating that he wanted a mohawk for all that mohawks socially seem to represent: rebellion, anarchy, punk rock, redneck neonazis (yikes!). But I wonder what it represents to him? I know that it was after visiting Spencer's in the mall where the clerk was a young man with a huge green spiked mohawk that my boy really started bugging me for his own hawk, and I wonder what entranced him about that boy? Probably something in the same way Madonna fascinated me at his age (and my poor father trying to explain whay he didn't like it when I sang "Like a Virgin" as I ran around the house). There is something in the rebellion, the representation of something "older" and "cooler" that is so alluring. I feel a sense of pride in his bravery as well for all the things I was too afraid to do myself.

This same boy wanted his ear pierced and I said no. I guess I do have some limits. I am not against having his ear pierced, but I think that it should be something he should be older to do. Of course, at some point, he may come haome after having done it himslef with a sewing needle and a potato in someone's garage, and if he does, I vow to compliment him on his work rather than frantically googling webMD for information about tetanus or making him take it out.

I promise to weather the embarrassment of his new looks well, and try to never make him feel foolish for his choices. I hope this encourages his independence and leadership skills and allows him to develop his tastes fully.

And what can I say? It isn't so bad being the mom of the coolest looking Mohican on the block.

Meanwhile, this is what the baby is working on:

Jonah and the Whale

My husband and I have a heated and ongoing debate about the theory of evolution versus creationism. He believes, verbatim, what the bible says - that God created Adam and Eve in the Garden of Eden and they were the first people. I sway a bit more scientifically towards the theory of evolution. He gets very angry and insists he did not stem from a monkey. We go around and around about this.

Yesterday our boys were watching a documentary about cavemen (Neanderthals, to be precise). One boy told the other that those were his ancestors - I chimed in that cave men were both of their ancestors (critics: yes, I know that homo sapiens did not evolve from Neanderthals). In walked hubby, saying, "They might be your ancestors, but they aren't mine." Now, it seems to me, that even if you believe in creationism and the whole Adam and Eve dealy-o, wouldn't they have technically been cave people as well? I mean I don't think the bible reports God created Adam a McDonald's and a Lamborghini. I think I recall something about leaves covering nakedness and hunting for food - but, heathen that I am, I may be wrong.

So the conversation then evolved (pun intended) about the "truth" of the bible. My husband was angry that I was trying to disprove the bible in front of the boys. I argued I was only proving that the bible is not always meant to be taken literally. The bible provides lessons that we are to learn from. I equated it to my son with the story of the boy who cried wolf. We learn a lesson from that story while knowing that it is indeed just a story.

So I asked the kids and the husband about the story of Noah and the Ark. How could Noah have taken all the animals two by two onto the ark? Wouldn’t the lions have eaten the antelope and the coyotes the bunnies? Why didn't Noah get asphyxiated by a boa constrictor? How did they all fit - was the Ark that big? Both boys seemed to contemplate this. My husband asked me whether it says in the bible that Noah actually took ALL the animals. Which led me to another point - either Noah had to have taken all the animals that are alive today, or, some species must have EVOLVED into other species? Nevertheless, I took it upon myself to look up this particular passage in el bibulo (Genesis 6-8) and happened to read that Noah did all this when he was 600 years old (critics: I know that you can interpret 600 years-old many ways, but bear with me here). This revelation only added fuel to the fire: an already ludicris story made even more so by the geriatricness of its hero.

It seems to me that in allowing my children a chance to think, logically, about religion does them no harm. While I know it can be a hairy subject, and that most of my family does not agree with the way that I perceive and go about teaching religion to my children, I think I do a disservice if I offer up religion without thought.

Adam and Eve is a creation story. Many cultures have them. The ancient Maya thought the world was created on the back of a crocodile. The theory of evolution is also a creation story, though one with a bit more data behind it. Should my children only be subjected to the Christian creation myth as truth? Or should they be allowed to peruse many creation myths to compare and contrast and rally against as they develop their own thought patterns?

Apparently however, according to my husband (and various others, I am sure), if you don't believe in Noah, you are going to HELL. That's a nice concept to teach kids, isn't it? Billy, if you don't eat all your peas, you could go to hell. Sarah, did you lie about making your bed this morning? Hell is awaiting you, young lady. What is hell anyway? Oh wait, I know, a burning hot sulphuric place where a guy in a red suit dances around with a pitchfork. Yes, this is definitely a good thing to teach kids. We won't let them watch Cartoon Network, but we will teach them about hell.

For the record, I don't believe in hell, and though my husband thinks that's where I might end up, I have to disagree. I don't believe that God (you know, when HE sent the pages of the bible floating down from heaven a few years back) intended THE BIBLE to be the last word. It's more of a guide - as is the Koran, Torah, Bhagavad-Gita. We take what we need, we live life in the "right" way (do unto others is repeated in most religions - karma, reincarnation, etc), and we are thankful for what we have everyday. If living by these rules and teaching them to my kids is wrong, well then, I guess I am doomed from the start.

Finally, I end with some words from Marx. While I don't agree with Marx fully, I do think there is some food for thought here:

Man makes religion, religion does not make man. Religion is indeed man's self-consciousness and self-awareness so long as he has not found himself or has already lost himself again. But, man is no abstract being squatting outside the world. Man is the world of man -- state, society. This state and this society produce religion, which is an inverted consciousness of the world, because they are an inverted world. Religion is the general theory of this world, its encyclopaedic compendium, its logic in popular form, its spiritual point d'honneur, it enthusiasm, its moral sanction, its solemn complement, and its universal basis of consolation and justification. It is the fantastic realization of the human essence since the human essence has not acquired any true reality. The struggle against religion is, therefore, indirectly the struggle against that world whose spiritual aroma is religion.

Religious suffering is, at one and the same time, the expression of real suffering and a protest against real suffering. Religion is the sigh of the oppressed creature, the heart of a heartless world, and the soul of soulless conditions. It is the opium of the people.

You can't chase the ice cream man during summer school

Recently my son was concerned that he was going to have to go to summer school. Though a teacher by trade, I don't particularly believe in summer school. While it may have its time and place, and for some students may be the difference between success and failure, I think overall, summer school just sets children up for school burnout. So I told my son, that while I was pretty sure he wouldn't qualify to go to summer school anyway, if he did, he wasn't going to go.

He immediately went back to school to report to his teacher that his mom said he didn't have to go to summer school. na na na na boo boo.

The teacher questioned me about this at his parent-teacher conference. She said that he didn't qualify for summer school (which we already knew), but that if he had, he would "have to go." I politely smiled and said no, in fact, he would not have had to go. I went on to explain that I don't really think summer school is a good idea. Summer is a time to catch up on other activities - activities in my mind that are very bit as important as scholastics: getting dirty, playing in the rain, Little League games and swim meets, chasing down the ice cream man, performing first aid on a bike-accident-scraped-knee, staying up late and sleeping in, pick-up games of basketball with the neighbor kids, sleep-overs, beach picnics, catching fireflies, counting mosquito bites, sleeping in tents in the backyard and roasting marshmallows. Summer is for enjoying being a kid without worrying about homework and tests and bastardized - oops, I mean STANDARDIZED TESTING.

I realized as my son listened to my short diatribe against summer school that he was getting another lesson here as well. He was getting a lesson in non-compliance. When do we do what we are told and when do we buck the system? This is a hard call. It's much easier to teach our children to go with the flow and not make waves. They stay out of trouble this way (usually), and tend to be labeled "well-behaved." But how do we teach our children to stand up for themselves, stand up for what is right and make judgments about what is important? I have to thank my father for teaching me that you don’t always have to do what “the system” tells you to do. It has enabled me to stand up for myself many times. I want my son to learn this as well, but it is a sensitive lesson to learn.

I want my son to grasp that I think learning is important, but that we can learn in many different ways. What I won’t yet tell him, but believe to be true, is that schooling isn’t necessarily the only (or the best) way for learning to occur. I just don't necessarily think sitting in a desk seven hours a day and regurgitating information is all that helpful. I feel that our school system is based more than not on this model. Somewhere we aren't teaching children to think for themselves. Yes, I think school teaches children to think - but not independently of the system. We just teach kids how to go with the grains.

I don't want my son to learn that you can defy all authority or always fight the system, but I do want him to realize that we have to take many factors into account when we make decisions, and sometimes making a stir is for the greater good of the cause. Summer school would not bode well for any of us in this family, and I highly doubt I will ever send him. At least not unless I feel it is for his greater good or if it is his choice to go rather than a bureaucratic mandate.

I know this same little boy wished his mother would have stepped in when he got sent to detention the other day at school for talking too much in class. Where was his mother’s system bucking then? Wasn’t she supposed to come down to school and give his teacher the what-for for sending her little cub to the wolves den? His lesson in non-compliance was extended: if the bureaucratic mandate makes sense, mother bear stays in her den.

I think my boy knows that I will step up and fight for him no matter the consequences when fighting is the right thing to do. I hope he is learning by example how to pick battles and when to stay quiet. Staying quiet isn't a feat I have completely mastered, but I'm working on it.

now I lay me down to sleep

Where is the time to write? There is none now that we have a mobile baby. She rolls, she flips, she scooches. The house is no longer safe from baby. Our bed is no longer safe for her either.

I co-slept (or shared-sleep, as the new term seems to be)with both of my kids, much to many family members tsk tsks: "It's not safe." "You'll never get them out of your bed." So on and so forth. None of which are true, of course. I find it very hard to understand how a mom can carry her baby in her body for 9 months and then put that child in another room to sleep?! It seems to backward. Definitely not my thing. In fact, even at seven, I still sleep with my bedroom door open and my son's as well so that I can feel more "aware" of what goes on in the night. I also still check to make sure he is breathing each night before I go to bed. Old habits die hard I suppose.

So our darling babe has quite a nest within the confines of our king sized bed. We sleep smooshed right up next to one another and save an occasional krick in the neck, it's working out quite well. That is, it was, until she became so...active.

I deemed the seven-year-old unsafe to be in my bed when he was older than his sister. I think he was closer to 9 or 10 months when he transitioned to a crib. He was also drinking bottles at that time, so there was less need for mom in the night. The baby is only five months, so to a crib she'll not go - there is no way I am getting out of bed the two or three (or four or five or six) times a night that she wants to nurse. But we are at a loss of how to keep her safe in the bed if we aren't in it. As yet, I don't think she quite has it in her to roll over one of us in the night without us knowing.

Summer is approaching, and I yearn for the ability to put the baby to sleep and then sit outside with a cocktail and enjoy an hour or two of a warm summer's eve. ALONE. So we may make a transition to napping in a crib and maybe laying down to sleep in a crib, and then being brought into mom and dad's bed later. Maybe. I am not looking forward to this. I remember all to well my son's big, round, confused eyes the first time I layed him to sleep in his crib. Though I stayed with him until he fell asleep, I could sense his confusion. I don't think it was fear, but definite anxiety. Sometimes thinking about it feels more than I can bear to go through again.

So maybe baby will never leave our bed and all those familial soothsayers will have the last word on the cosleeping debate afterall. Somehow I doubt it though. When we're both ready, we'll make the transition to crib and then "big girl" bed like most every other child we know. Until then, I go to bed when baby goes to bed. And that's okay with me.

New Light

I have to grocery shop at least once a week. There must be food here for my husband and son to pack for their lunches. If there isn't, my husband must eat fast food, and, even worse, my son must eat SCHOOL LUNCH. Since we don't want either of these atrocities to occur, the baby and I must foray into our friendly neighborhood supermarket.

Most of the time, I strap the baby into our mei tei Asian style baby carrier for our shopping trip. The reason for this is two fold: first, it allows us to snuggle. Tummy to tummy is such a pleasing way to carry the baby. It keeps her very content while we are in the store and more often than not even lulls her to sleep. The second reason is that I am a bit fo a germ-a-phobe, and I have found that if the baby is in the mei tei, people are far less to try to touch her. It is interesting how most people don't mind intruding on a baby's personal space, but are far less apt to intrude on the mother's. Oh, mother bear.

That being said, during out last shopping extravaganza, I left the baby in the baby bucket. It was biting cold outside and she was bundled up warmly. She had also fallen asleep. And, I felt lazy. So I hauled the carseat from the car and plopped it into the shopping cart. The movement of the shopping cart rocked the car seat gently and the baby stayed asleep for a bit.

Our first stop was the delicatessin. Deli meat is a necessity in our lunch-packing home. The woman behind the counter cooed and sighed over the baby as she cut our meats and cheeses. Once she had completed my order, she came out from the counter, and, grasping the baby by the hand, began baby-talking to her. At first I was taken aback. I could just see the listeria oozing from her gloved hand. But she was so happy when the baby smiled at her, I just had to laugh. "We've got to show Jean!" she exclaimed, rolling my cart off towards the bakery. Having no choice, I followed behind. "Je-ean," she called to the young woman behind the counter. "She has all boys, " she then whispered to me knowingly. Jean came around and kissy faced the baby a few times, before gently admonishing her friend to go back to work and leave the customers alone.

No sooner did we hit the cereal aisle then I noticed an older man nudge his wife our direction. They beamed as we walked past. Two more women approached the cart to have a look at my baby. "I've been eyeing that baby for a while!" one of them exclaimed as she peered over her glasses and made goofy faces and kisses at my daughter. Both were simply filled with joy at seeing a baby. And, kind soul that she is, my babe obliged each of her courters with smiles and babbles. Every person who walked up to visit with my little one left beaming. She'd made them each feel so special, as if they were the only one in the world that she'd bestowed such a delightful smile upon. What a wonderful feeling it was.

That shopping trip took much longer than our usual jaunts, but as I left the store, I felt warm. I had brought a tiny little ray of sunshine to a few people just by allowing my baby to greet the world. Babies make people so happy.

A few days later I took her to see her first production of the Vagina Monologues. Again we were greeted with delight. "Thank you for bringing a baby!" one woman cried.

It is so affirming to see that there is still beauty in this world, and it is found in even the smallest creatures. That joy can be created in the strangest ways and oddest places. Who would have thought that a quick trip to the supermarket or the theater would result in creating moments of happiness for so many people?

I can only hope that this child of mine continues to inspire such joy in those around her. She has brought a whole new light into our lives, one that I will strive to continue to share.

the nonattached parent

Buddhism tells us that attachment causes suffering - the cure for which is nonattachment. Undoubtedly, this is easier said than done. How on earth can one practice nonattachment as a mother?

I have thought long and hard about this. Each and everytime my children have been hurt, physically or emotionally, I think to myself, "Now see, this wouldn't be so bad if I wasn't so attached to them."

Ironically, the method of parenting that I seem to align myself with the most calls itself Attachment Parenting, so there is a definite conflict of interest here. While I am not a Buddhist, I am certainly interested in the philospohies that Buddhism teaches, and I think the fact of the matter is, attachment does cause suffering.

Recently the father of a friend of ours died. I debated long and hard about taking my son to the wake. I believe that death is a part of the cycle of life, and I don't think that children should be sheltered from understanding that. Though my son does not know death first hand, he knows that he is missing and aunt, an uncle, a cousin, and a grandma because of it. He asks a lot of questions about death, many of which I just cannot answer. I worried that if I took him to the wake and could not answer his questions, I might be doing more harm than good. While I would love to tell him, "you die and go up to heaven and see everyone you love and it's just great," I don't believe that. I'm not quite sure what I believe about death or what comes after that, but I know that sugar coating it for children seems wrong. Death is raw and it hurts. Over the summer, my son said these words: the angry smell of death. I told him to be a writer. But it's true...death is not pretty.

What do you think happens when you die?" I asked him.
"God will raise you up," he replied.
"Where do you go?" I continued.
"Um, to heaven - that's what it's called where you go."
"What do you do there?"
"I don't know, I have never been to heaven." I had to smile at his answer.
"Do you think it's a place?" I persisted.
"No, that's impossible," was his answer. "And you don't wear shirts there!" he added as he ambled out of the room to finish eating his pretzels.

Death has not been kind to our family. We have lost a lot of young people in serious accidents: boating, cars, and a fire. We have also lost to cancer. If my son is confused about death, he probably got it from me. I know that I get a bit neurotic thinking, and worrying, about death. I am not afraid of dying. I am afraid of living after someone I love dies. And I am morbidly afraid of losing one of my children. I used to imagine that if anything happened to my son, I would simply crawl into bed and stay there for the rest of my life. Now that I also have a daughter, I realize that probably, life would go on. It would have to.

It makes me wonder how do these Buddhists do it? Are those who achieve enlightenment the childless ones? How on earth can one form a relationship based on nonattachment with their children? Truly, it would make the cycle of life easier to bear, but what would it do in the mean time?

I pray each day for the safety and health of my babies. And I admit, I worry far too much about their safety. While I don't keep them in a bubble, I certainly wish from time to time that I could. I cannot practice nonattachment, even in it's sketchiest forms, when it comes to my kids. I am completely enamored with them and losing them is a crippling and unbearable thought.

Though I have started to realize that each day, I do become a bit unattached. Every day, they grow away from me and into themselves. Even the baby, who needs me to do nearly everything for her, has begun to be able to pick up her own toys. If I rethink my original quandry, I debate: maybe this is what nonattachment parenting is...letting go. It doesn't mean not loving, not forming strong bonds of attachment, but only being able to break those bonds little by little. It means setting free.

It also probably means I should stop pestering the kids into letting me go with them when they leave for college.

Come Back Little Boy

I have lost my little boy to the world of men.

For so many years, he was just my little guy. "My best boy." I would pick him up from daycare and he would barrel toward me yelling "Mommeeeee!" and throw himself into my arms with gusto. I was allowed to cover his face with kisses and hold his hand all the way to the car. We were the best of pals. He liked what I liked, ate what I ate, listened to what I listened to. Two peas in a pod.

I like to blame the change on first grade. Or his dad. But somewhere along the way, he started to develop his own interests. It started with kissing me in public. The first time he shied away from me, I chased his face around with puckered lips, not realizing that the shun was purposeful. I blamed it on the baby. After 7 years iof being an only child, I was now pregnant with his little sister. He must be angry with me - that's why he won't hug or kiss me or hold my hand in public. Yet when the baby came, he loved her almost as much as I did, but still he didn't want to kiss me if anyone else could see.

Then he started listening to Johnny Cash. I can't say I didn't help fuel this interest - what mother isn't proud of her little alternason listening to the man in black? But through the music I realized he was starting to define his identity and he was aligning with men! Johnny Cash was a man's man - man music. Goodbye Raffi. Suddenly he was running around the house singing, "My name is Sue. How do you do? Now you're gonna die!"

The worst was yet to come. For his birthday I bought him a nerf football. Sure, he had had many footballs before: people love to buy little boys balls of some sort or another, but this orange and gray ball seemed to fit into his hands with ease. We discovered, he had "an arm." He could throw at least as far, if not farther, than his eleven year old step brother. And, the real clincher: he's a leftie. More than one man has watched in awe as my little boy lobbed one off with his left hand.

I may never pinpoint the exact moment it happened - this loss of my boy into the murky, dangerous world of men, but one particular day comes to mind. Many months pregnant, I decided to nap on the couch while the boy watched "Yu Gi Oh!" And during that half hour snooze, a man wand must have waved over our house, as when I awoke, he was switching back in forth from a Bears game to a Vikings game mumbling to himself, "I can't believe they interceptioned it! Did you see him juke that guy?" I rubbed my eyes in disbelief. "Where is my son?" I asked. "I'm right here, mom....oh man, they need to run the freaking ball!" he cried placing his hands over his eyes. It was then, I began to feel that he was lost.

He was torn during the Superbowl. Dad is an avid Bears fan, Grandpa (Pa Pa) a Colts fan. "I still like the Bears first, Colts second, Patriots third and Chargers fourth" he announced to me last night after the Colt's victory. He and Dad then sadly commiserated in his bedroom for a few moments over the Bears defeat.

This morning, a day off of school due to arctic temperatures, I awake to the sounds of his NFL game on the PlayStation.

"You have thrity minutes of time to play that," I announce groggily. Glancing down at him I take in how his new large front teeth give him such an impish look, and the librarian chain I made him start wearing on his glasses (he loses them all the time!) is all askew. I smile at how oblivious he is to it's dorkiness. I know my little boy is still in there, but I also see the man he will become wrestling within as he tries to align himself with the men in his life and imitate their ways.

"Yo, Mom! Get me a beer, will ya?" he calls out, then burtsts into a fit of giggles at his own hilarity.

Come back, come back, little boy, I think. Then I remember how he made me sit right next to him during the game last night, pulled blankets around the both of us, and even saved my spot for me, though no one else was here.

A Mother's Guilt

Thoughts on motherhood?

Alas, where to begin? Motherhood is such an all encompassing endeavor...but I think I can easily start with guilt. A mother's guilt. What mother doesn't feel riddled from guilt from time to time - or all the time, as the case may be? As I type this, I can list a multitude of things that could cause me to feel crippled with guilt right now. My baby is lying on the floor under her flashing lights mobile instead of strapped to me in her mei tei. Guilt. She is fussing and I keep saying, "Just a minute, honey!" Guilt. My son is at his grandfather's house watching god-only -knows on television instead of here with me, sticking to his new Feingold diet. Guilt. It never ends, this guilt. I can have a perfectly wonderful day with my children - I can do everything that I believe is "right," and still feel bad.

For example. My son has been grounded for the last few days because, in a flash of anger, he threw his pop tart at the wall during breaskfast. "I just overreacted!" he pleaded. Nevertheless, I decided to hit him where it hurts and denied him the privelage of spending the night with his Nana. But, of course, I felt guilty about this, so I took him to dinner that night. We went to a great cafe with yummy vegetarian sandwiches, because he likes the bean sprouts on them. We sat and ate and chatted. I breastfed the baby while we played a round of Crazy Eights, and then we came home, bathed, did homework, and read a few books before bed. What a wonderful evening.

But then. Then I decided to check on him before going to tucking myself into bed with the baby and my husband. This is a mistake I have made over and over and over during the seven years I have been his mother. Looking at your sleeping child is the epitome of guilt inducing actions.

I pull the blankets back up around him, his legs sprawled out, the fine blonde hairs laying flat against his slightly damp skin, wet from ferverent dreams I suppose. A few hours earlier as I had tucked him in, I pulled these same blankets up, promising they would protect him from whatever lurks in the night. "This blanket was handmade by Grandma with love, so nothing bad can penetrate it. And this blanket was Dad's when he was a boy, so it has had years of protection under its belt." I smooth back his hair, wipe his brow and stare with wonder that this huge boy was once the same size as his four moth old baby sister in the ther room. I feel guilty for every cross word, for every time I was irritable...for not being a perfect mother all the time.

"I love you little boy," I whisper each and every night into his ear, with hopes that these words and that feeling will become so ingrained in his subconscious that never a day will he doubt how I feel about him. So that even in my moments of anger, when I cuss and grit my teeth and say things I don't mean, he will know deep inside that he is the love of my life.

I switch off the hall light and climb into bed, taking the baby from my husband, smiling down as her bright eyes stare back at me. I sigh and roll to my side hoping tonight she might nurse to sleep, so that I don't have to feel guilty when I don't want to walk her up and down the hall until she drifts off...though knowing that inevitbaly, anything these children want and need from me I will give them, all the while always worrying that it wasn't enough.

Whew. If you actually read that, you are crazy and I owe you a drink. ;)

after copying all that I see I could have exported it to my hard dive. sigh. oh well.

if you haven't got a penny, a hay-penny will do, if you haven't got a hay-penny then God bless you

2010-11-26T06:06:00.000-08:00

Thanksgiving is probably the most laid back holiday we celebrate. Most holidays (esp. the religious ones) we spend with my dad and that side of the family. My dad's side is pretty religious and so Christmas and Easter are very important to them. As well, my dad has a pool and a large house on a lot of land with lots of space to have parties on holidays like the 4th of July, so we often end up there.

Celebrations at my dad's are always very formal (well not the 4th of July pool parites, but my dad is a little uptight and a lot OCD, so even laid back pool parties haev a lot of 'rules') - real silver dinnerware, dining at the dining room table, wine in goblets. This is very nice and I appreciate that my children get to grow up being exposed to that sort of stuff. I have no fear that they would not be able to assimilate into even the posh-est of parites as adults. But sometimes it's just too much. I want cheap beer and paper plates, throw-away napkins and plastic cups. I want the TV on while I eat.

At home, for every day purposes, we're an amalgam of both the above scenarios. We eat dinner together every night (try to anyway), we eat off of my very cool Goodwill plates, and we do use cloth napkins (cuz I'm green like that). We only have the TV on for special occasions (my kids think it the best treat of all to eat dinner in the living room and watch TV!). I want them to grow up knowing that mealtime as a family is a time to be together, not to zone out to the TV and devour your food without a thought in the world, to be aware of the food and company themselves. I want them to have good table manners, but I also want them to value the fact that spending time together as a family, no matter the setting, is more important than always knowing which plate is your bread plate, that the purpose of the holidays isn't just a show of cooking skills and dinnerware, but that even the quaintest of settings can equal the most meaningful and wonderful times of togetherness. That's what it's all about, after all, just being together for no other purpose than being together.

So Thanksgiving with my brother-in-law and his family is a nice, laid back affair. We eat off paper plates and watch football. We drink beer. The food is a mix of good ole homemade and store bought. It's so enjoyable. The kids get to run around. My BIL has some goats, ducks and a horse, so the kids get to play with the animals and no one frets about them getting dirty before (or after dinner). We just chill out, relax, maybe play a board game. It makes me so happy that my kids get to see both sides of how a holiday can be spent. While I appreciate the stringent adherence to tradition and etiquette that we find at my father's, all the pomp and glitter, I really love the laid back, no shoes, cold beer relaxation of the other side too.

and, because every blog is more amusing with pictures:

'til the shadows and the lights were one

2010-11-20T12:05:00.001-08:00

For your amusement, now that I can actually sort of laugh about the fiasco of my hospital encounter, I present to you before and after:

I took this after my first shot of dilaudid. It was IM in the buttocks - not so fun, but it worked quickly and i felt better. I thought, "oh ho ho, pain meds are working, won't it be fun to document this hospital stay in photos parce que c'est la vie cystique, n'est pas?" (sorry for my francophone friends if my French is bad. it's been une longue temps) However, I was pretty much incapiaitated with pain 45 minutes after this as the pain increased and the meds did less and less to help (or perhaps they would have helped if I wasn't waiting for hours between doses.) Here is a little secret: when something depresses my CNS, my left eye gets slightly smaller than the right. I have tons of pictures that show this and even brought it up to my eye doc who wanted me to see a neurologist. I declined, but now, every pic of me you see, you'll know if I was secretly hitting the hooch or taking granny's pain killers.

I took this about 6 hours later, after I was admitted and had my wonderful PCA pump. It was set on continuous dosing, which is why you see the button wrapped up. it only occurred to me after they took it away that I might have been able to hit that button for a little extra oomph. Oh well, it did it's job.

And that, mes amies, is a set of the ugliest pics of me you may ever see. I envy those of you who take such cute hospital pictures. I hope my next stay is planned so I can at least have a little lip gloss on hand, rather than the sweaty, dying cowboy took I was sporting.

better out than in, I always say

2010-11-18T05:10:00.000-08:00

magnesium citrate. yuk.

and thus has been my first overnight, non childbirth related hospital stay.

a hot mess.

Most of my faithful readers will have seen on cf2 that I came in with severe abdominal pain. Honestly, the worst pain I have ever felt in my life. I ended up in the ER because I was unable to walk into my clinic (that's how bad, I could't walk).

ERs are definitely really efficient places. I liked how they gave me a shot of dilaudid which wore off after 45 minutes but left me writhing in pain for 2 hours. that was fun. I honestly thought I was going to die yesterday - either from the pain, or that they'd decide to do exploratory surgery and kill me, or my stomach would crack open and spill all the contents out into my body cavity.

I survived. Now today, I feel pretty good (might be the pain meds talking). My clinic NP came down and talked to the nurse who then put a call into my doc for me. Finally. I have asked every person in this place to consul twith the CF people. Hopefully, (fingers crossed) I will be out of here ASAP. Well, after I drink this nasty shit and then shit it all back out. I was going to decline this last test, but I figure I need to get the crap (pun intended) taken care of so that the admitting will release me.

I have had no treatmetns in 48 hours now, so I am a coughing, junky mess. I want to go home. I miss my kids. I miss my real doctor...bah.

so that's my fun story. Wanderlosts hospital vacation. I'm not sure i could do this for weeks like some of us have to. well, I could, if I had my doc who could write orders such as NO LABS at 4 AM and such as that. I feel this is practice for when my time comes that I do have to be admitted for an exacerbation and I need ot get my mind around coping with that.

Yesterday I was in so much pain I would have agreed to anything (almost agreed to an NG tube - that's how bad I felt!). Today, feeling much perkier, I want nothing more than to go home. I'm just not that great of a patient. i don't like being told to do things without a reason or consult (with me). Maybe I need to learn to let things go more, but for now I am on a mission to go home. So with that, I head to the potty to learn to let go!

come over to the window my little darling, I'd like to try to read your palm

2010-11-09T17:38:00.000-08:00

I'm feeling verbose today.

I find blogging so much easier than writing my thesis, which is now going on one year. Some of that is my fault. Well, most of it. 6 months was spent waiting for my director to read my proposal and set up a meeting with my committee, but since May, when that meeting was, has been my own apathy. I've set a new goal: my completed first draft will be done by December. I have about 40 pages written and in many ways it could be finished, I just need some serious editing.

My point is, everytime I sit down to work on writing it, I freeze up. I keep expecting to pour out honed essays, works of great insight and beauty! I rarely work on a blog for more than the time it takes me to write it and reread it (and as you can see by my many typos, even that doesn't always happen). Yet when I read back in my blog I find I really like some of the things I've written. So I keep stealing them for my thesis.

I've realized here in CF-land that since we all read one another's blogs, there are often concurrent themes and events that need addressing. I was wondering if, because we know that we are reading one another's journaling, we don't feel the obligation to make some sort of commentary on said events. I hope that doesn't come across the wrong, I don't mean it in a keeping-up-with-the-Joneses kind of way, just that this community is tight enough that when something of significance occurs, it touches us each deeply and blogging is one of the ways we reach out to one another to talk about it. And, let's be real, because we all want to release our own thoughts and conceptions into the blogophere. This has both positive and negative ramifications, of course.

Sometimes I write something like what I wrote above and I think it had great insight. Then I reread and it and think WELL, NO DUH.

Anyway, I had this great little note written out about blogging and the internet. I can't fnd it of course - one of those cocktail napkin epiphanies that all writers seem to be able to lose rather than use. It was something along the lines of how our blogs have become another outlet for our self-narrative (and in our case, for our illness narratives...hello thesis!). In a way, our self-narratives were written for us at conception as far as CF goes. Because of that commanility, we now have to carve out an identity separate from our disease and from one another within that disease as a means of self preservation - hence our blogs. Most our blogs have the overlying theme of life with CF, but they are all tinged with our individual reflections of self undefined by CF.

Oy.

I am going to watch "Sex in the City 2."

the worms crawl in the worms crawl out the worms play pinnochle on your snout

2010-10-18T06:15:00.000-07:00

Here is what my days have looked like lately:

take kids to school - come home and get kid I babysit for - vest/meds/etc - some odd chore - pick up kid from school - hang out, grade papers for class I teach, make dinner, run around - pick up kid from basketball and drive to FB - get home, make dinner feed kid - get kid one in bed feed kid 2 who is now home from FB -homeowrk, bathe etc kid2 - leave for class I am teaching - get home - go to bed

What is missing from that fun filled day? Why, it is my evening treatment. Yes, that's right. In the name of all that is domestic I have foresaken my evening treatment and thus will probably get very sick very soon.

The truth of the matter is I just can't handle these long days. I've never been a high energy type of person. I have always required a lot of rest. So the thought of staying up until midnight doing treatments has been more than I can bear. My husband is working out of town and so I am doing everything alone. Needless to say, I have been close to tears from pure exhaustion more than once.

I know, I know, I am probably supposed to suck it up. I aksed for this life, right? I signed my kid up for two sports at the same time, I am the lazy bones who opts not to stay up and clean out her lungs thus risking infection. I get it. But I am tired and therefore complaing about being tired makes me feel better.

The good news is Football ended yesterday with a slaughtering of my son's team (38-0 - ouch) and b-ball ends in 2 weeks and then, friends, I do nothing. woot.

In other news, my dear friend Cowtown recommended a book to me called Stiff: The Curious Lives of Human Cadavers by Mary Roach. Within the book, Roach visits a human decay facility in Tennessee where foresnic scientists study the decay process of the human body. Roach writes, "Let us return to the decay scenario. The liquid that is leaking from the enzyme-ravaged cells is now making its way through the body. Soon enough it makes contact with the body's bacteria colonies: the ground troops of puterfaction. The bacteria were living in the body as well, in the intestinal tract, in the lungs, on the skin - the places that came in contact with the outside world....as will happen in times of plenty, the [bacteria] population swells. Some of the bacteria migrate to the far frontiers of the body, traveling by sea, afloat in the same liquid that keeps them nourished. Soon bacertia are everywhere"(66).

So I am reading this and all I can imagine is my dead body decaying into a green puddle of mucoid slime. Because, really, wouldn't the Cf body decay with a slightly different set of circumstances? Like, wouldn't our high salt content perhaps slow the process down if it weren't hindered by the other worldy bacteria content in our lungs? I have half a mind to let someone find out after I croak. The book is an interesting read though maybe not for the faint.

Final thougt. My port scare hurts. Like a burn. Yesterday I accidentally scratched it and about fell over. ouch. Is this normal, who the hell knows? Nothing is normal in la vie cystique.

now i've got the needle and I can breathe but I can't bleed

2010-09-27T06:15:00.000-07:00

I had to have my port flushed last week. I asked the NP at my clinic to set up the flush as a flush/learning appt so that I can flush from now on at home. I'm not particulary scared of needles, I have poked myself before for an array of reasons, the two main were hormone injections when I was trying to have my daughter and the time back when 7% hts wasn't premixed yet and I dropped the huge gauged mixing syringe and it went straight into my leg right up to the hilt. I didn't fall over and faint from that, so I think I got the port thing.

Anyway, as is the case with my experience in the medical field, the nurses look at me like I'm CRAZY when I say I will be doing my flushes at home. Apparently they have never had anyone do that. I don't get it, but oh well. I assure them I know plenty of people who do this, there are even videos online.

I also only have an hour until I have to pick my daughter up at school.

So you know you wait forever on pharmacy (not to mention how long intake took - THIS is why I want to do this at home, I don't have time to be waiting around on other people's schedules every month).

Finally the nurse comes in with the port dressing chage kit thing and the saline ahd heplock and we both put on masks and gloves and she has me do the cleaning with the sponge thing. I like that tool, it reminds me of the things that hold the soap in them with a sponge at the end so you can clean the dishes. I digress - I realized that with the mask on, I can no longer see the port. I can see it just fine without that mask, but the mask skews my view and on top of that, when I look down I end up fogging up my glasses.

We decide to take the kit into the bathroom so I can use the mirror. She hands me the needle, which is bigger and scarier than I expect (but I'm tough, yo, I take it in stride) and says, "find the sweet spot and pop it in." Well, I used lidocaine before I came in and can't feel anything but the hardness of the port, so I aim for the middle and poke. The nurse hooks up the saline, but the port won't flush. The nurse fiddles around with it a bit (um, ouch!) and then decides we have to start over. Brand new kit and everything (which totally irks me as a waste, but whatever). She says, "I am just not comfortable with you doing this at home and since you are on a time crunch, I will do it for you now and you can come back next month and we will try the teaching again."

Really, that annoys me because I just missed the spot (I thought), it wasn't all that hard. Anyway, she comes back with the new kit, pops that bad boy in and guess what? It won't flush! Wasn't just me, sucka! Anyway though, I have to leave. So we decided I will get my daughter from school and then come back so that she can try again.

When I get back, I sit in a chair this time. She pops the needle in and the port flushes right away, so our guess is the first time might have been a positional thing from me looking down or standing up or whatever. I do, reluctantly, agree to come back next month for another walk through, but I really feel better knowing I hadn't totally effed up the port flush.

So, nothing is ever easy here in medical land and now my port is kind of sore, not intolerably, but the vest is uncomfortable again.

I do have a cold though, so there is some silver lining that if I have to go on IVs I am all set. Not that I want IVs, mind you. or not that having a cold doesn't suck. But you know...look at the bright side. ha.

I loved you like a long lost brother

2010-09-16T11:19:00.000-07:00

My baby brother was married last weekend (the above photo is a few years old though).

It is hard to believe he is a 29 year old married man, I still see him as this little blonde twerp running around trying to hit me with his He-Man sword.

We traveled to San Diego on Wed. to make a bit of a vacation out of the whole thing. My kids traveled EXCELLENTLY - we are totally ready for our first over seas trip, I say. And rumor has it my other bro and sis-in-law might be moving to London for a year, so there is a distinct possibility that will be our first foray across the pond.

Anyway. the weather was a lot colder in CA than I'd expected. I'd planned on catching some waves but 60 degree water temps and a newly healing port don't make for a surfing queen. My boys braved the waves for a bit though, tougher than I, they are.

I did get a bit of shopping in and a very nice lunch with fellow CFer Cowtown - aka Kelly. We had a good laugh over the fact that we were both hacking away at our table. I love hanging out with other cystics. It's something I never did before the last few years and I feel I missed out on it as a kid. The commraderie in the just knowing the person with you shares your secret is really fulfilling, so I owe Kelly a big thanks for making the drive down to see me - despite a phone call from ym ten year old saying, "Mo-om, when are you coming back? This is a fmaily vacation, not a friend vacation!" oy. No rest for the mommas.

The wedding was a success. No one said, "I OBJECT!" The bride was gorgeous and my bro looked great. All the girls think he is a stud. I still see twerp-head when I look at him, but I am proud when ladies fawn about knowing he is my baby bro. Once when I was a cocktail waitress in a Mexican joint, we did a Christmas gift exchange and the girl who i got as my giftee asked if she could have my brother for C-mas.

My half sister was there also with her 6 kids. They live in NM and we don't see one another all too often, so that was a nice treat. My kids had a great time with their cousins. Marlee kept calling them her "new cousins."

My mom also turned 60 when we were there. I talked to my son about how important that was, and that both my grandparents were there to witness it. I tried to get him to imagine what it would feel like to see your child turn 60. He said, "I want you to be at my sixtieth birthday!" It was a bittersweet moment, as I would like nothing more.

I didn't take my vest with me, I have yet to travel with that, and I paid for it a bit. During the ceremony I had to do the Darth Vader breathing so as not to cough thinking, "not now! not now!" Funny how glad I am to see that old boy when I haven't in a while. AND, I can now use both shoulder straps when I vest. It took about 3 weeks for that small pleasure (due to nuevo port).

Now we are back to the grind: school, work, etc. I am soo ready for another vacation!

the monster mash, it was a graveyard smash

2010-09-04T16:01:00.000-07:00

So, we're one week into el port-o and I have to say I don't love it. I know I will when I need to use it. But for the love of pete, I can't imgine having a needle stuck in it! It still really hurts. I had myself convinced that my daughter had knocked it loose yesterday as she likes to come barreling into me. I wasn't looking and the pain of contact when she hit my chest brought me to my knees with a hearty eff word. oy.

I am a bridesmaid in my brother's wedding next Sat. and my dress sits right BELOW the port. C'est la vie cystique, I guess. I hope it starts to look prettier. Somewhere along the way this seemed like a good idea to get out of the way before we left. Now I ain't so sure. And while I have removed my own stitches, it looks as though the port is here to stay.

I think it needs a name.

In other fascinating news, I made my own zipper jewelry hair barrette which is super cute. I love seeing things I like and making them myself. truly rewarding.

I had some more intellectual stuff to say but the truth is my pain meds are kicking in and I no longer give a shit. Oh, I was going to say something about meds. Now, it might just be the crowd I run with, but people are just not shy about asking if they can have some of your pain meds. HEL-LO, I am in PAIN here. Clearly these people have never felt the "you are a junkie" vibe some medical practitioners - vowing to save your soul from addiction - give you when you call for narc refills. I know i have been guilty of this very thing in lives past. But I will never make that faux pas again. Off soap box.

Wee one wants to watch "Scooby Doo" so I must surrender el computadora to her whims. She is so cool though. She watched all of season one of "The Munsters" on netflix and wants to be a vampire mermaid for Halloween.

fotografias:

port, one week post

mon visage - see the zipper hair thing?

Mugshot

it's outrageous and insane these crazy prices in PORT of Spain

2010-08-27T16:38:00.000-07:00

Home from an uneventful port surgery. Uneventful as in everything went as planned, no snafus.

I had my surgery at the Allied Physician surgery center in town of which my step mom is a share owner and practices at frequently. She had recommended both the surgeon and anesthesiologist to me and was present in scrubs during my surgery. While I was in the waiting room before she arrived I had been watching one of the nurses, or nurses aides maybe, an older, heavy set lady who seemed none to happy to be there. She had called two patients back before me without much of smile or personality at all, she even seemed a little annoyed about it. I'd thought to myself that I hoped she wasn't my nurse. My step mom arrived shortly after and the I was called back by, lo and behold, grump lady. Except suddenly she wasn't grumpy anymore - quite chipper and soooo happy to see me. I told my step mom she was going to have to come with me to all my medical stuff. lol.

Anyway. From there I had a vanc drip hooked up and I opted to go ahead and get the general. I was told it was my choice, i could do the conscious sedation or twilight or whatever it was called or just go under and I decided I wanted to be aware of nothing. So I got a beautiful combo of versed and fentanyl (how pleasant that was!) and then I was out.

I woke very confused and was told that I kept asking where my daughter was and was afraid I had left her home alone.

I got a pediatric sized "smart port" which can be used for draws and contrast as well as meds, slightly above my right breast.

and that was all they wrote.

I have to say that post op fentanyl wasn't cutting it for me, which is wierd. they offered me demerol, but I declined that opting for more fent. After 150mg of fent and 10mg of percocet I felt pretty good. Tolerance, maybe? I dunno.

Now I am slightly tender. It hurts a bit to bend over or raise my arm up but just chilling out (or typing this) is OK. The worst is my throat. My throat is on fire and despite all the narcotics, I just can't shake it. I think throat pain is one of the worst types of pain and i have little tolerance for it. But...whatcha gonna do?

So, all in all things went well and despite my uncertainty in the wee hours of last night's morning I feel glad that i did this. The port is quite small and I think it will be pretty unnoticable. I look forward to the ease it should give me with meds. I think it will help my compliance with getting IVs when IVs are the best thing. At least that was my intention.

So, I present to you my ported up chest.

'cause the truth you might be running from is so small

2010-08-26T23:27:00.000-07:00

I'm awake. Insomnia, I guess. Nerves more likley. My port surgery is in about eight hours and I really didn't think I was all that worried about it. And maybe I'm not, but it is just one more factor on an already mounting pile of issues that are causing me anxiety.

My husband has been laid off of work for a month - he was supposed to go back tomorrow, but now they tell himn Sept. 10. I have a house that I rent that I was trying to sell while the tenants stayed on for the duration of their lease and then month-to-month. But they decided to leave so I needed to find a new renter ASAP, because even when he is working, our income would be hard pressed to afford two mortgages. I did find a renter and my fingers are crossed she is a good choice. I hope I hope.

Anyway, then we have this mountain of medical bills that never seems to end. My kids both start at new schools this fall, my husband and I are working uber hard at our marriage and so here I am awake. I normally would pop an ambien and have a cocktail but I can't eat or drink anything and don't think an ambien is a good idea before sedation - though I really don't know if that would matter. I did eat one triscuit and a pepperocini. cheater. and I won't tell that I did - it's hard being this rebellious.

EDIT

I am finishing this post now because my computer went haywire last night and I did finally fall asleep about 4. I head to the surgery center at 10. SO I leave you with one last picture of my virgin chest.

boob shot. ha ha ha. I'm delerious with fatigue! Wish me luck.

wouldn't it be a shame if we were all the same

2010-08-11T07:14:00.000-07:00

Dear "normal" world at large,

I've been toying with the idea of letting this blog be public. I mean, yes, it is already a public blog, anyone can read it (as proven by the statcounter index that tells me I seem to have lots of readers in India - WTF?). But most people don't know i keep this blog unless a) they have CF or know someone with CF and b) are a good enough friend that they have heard me talk about the CF life enough to find this and read it themselves and c) my mom, who read the whole thing after locating it and then promised never to read it again. sorry ma.

I have been blogging online since before blogging was called blogging. But always in these wierd niche communities: body modification, livejournal (which I still have but that badboy is under lock and key) and CF. Never anything I really put out there. You had to know me, know my niche, and then stumble across the blog.

So if I linked this to FB and made it as public as public can be in my world (250 Fb friends, 3 real ones), I would have to make a big confession:

I have cystic fibrosis.

There, I said it. So that means the cold you thought I had for the past thiry years, or my bad asthma, or the fact that i simply smoked way too much weed, all those things that made me cough until my face turded red, made me stop what I was doing, made me pee my pants when I laughed because that laugh turned to a cough - all that had an underlying reason: I have this wracked up set of lungs. and i was an A-1 expert at hiding that from you.

Yes, I know, some of you already knew this. You went to elementary school with me and my mom told your mom, or our stupid 6th grade teacher told the whole class when I went to the doctor once. or maybe we swam together and you knew from that. Or maybe that dumb kid who spread around the fact that I had "cerebral palsy" got to you. Whatever the reason, some of you knew.

some of you did not. and so you probably wondered but never asked. or maybe now you think back and say A HA! It all makes sense now.

But I tell you, if you didn't know, it is because I didn't want you to.

I allowed myself to be defined by anything BUT CF. You may have known me by many other labels but not by ths one. I don't want it to define me now, but I have come to accept that it is who I am. I don't want to hide anymore because I am no longer worried about what the world thinks of me.

I actually have come to create an identity for myself within my disease. It is who I am. An important person taught me that, the idea of self acceptance, and I've muddled over his words for a long time.

I don't want you to understand or feel sorry for me, and for god's sake don't tell me about your sister's cousin's boyfriend's nephew who died from it. I already know the statistics. I know what I am facing. I know the reality of the disease: the good, the bad and the ugly. I know it in a way you never will.

Please, feel free to ask questions, to educate yourself. But don't feel sorry for me. and don't tell me what I should and should not do. Don't take a balloon away from me and assume i can't blow it up, or carry something for me or tell me I probably shouldn't run in the heat. Don't freak out if someone lights a cigarette in my presence. I can take care of myself, I know my own limitations. I'm not invalid and while I know you care and mean well, it is demeaning to me for you to attempt to assume you know how to help me. If I need it, I will ask. I've lived the same life you have, just as fun, just as wild, and just as independent. and I keep living that life.

Once you get to know the CF crowd you can begin to understand that I am just a small sampling of the amazing people who live with this disease everyday. And some of us tell you about it and some of us don't. We choose not to because of mostly social reasons: stigmas, association as "other" or outcast, because being different is only accpetable if includes green hair and tattoos, not if it includes a shortened life span. Because your well meaning gestures are often embarrassing and bring attnetion to us when we least want it.

The best thing I ever did for myself was become ingrained in the Cf culture. I would have been so much happier to have shared my disease with you when I was younger if I had found connectiveness like i have it now. I would have cared less about what you thought and more about what was good for me.

It has taken me thirty three years to begin to get to the point of self acceptance, and it might take me another thirty to actually link this blog to something public.

In the meantime, I keep living and learning. and living. and living. you got that?

walk a mile in my shoes

2010-08-07T17:11:00.000-07:00

Long over due for a post, c'est vrai.

so, here is the skinny. some Cf related, some not.

I had clinic back in July and that was uneventful. I think my FEV1 was in the upper 60s, so pretty much normal. I had a great colistin month in July where it actually seemed to be working. Some months it doesn't seem like it does much, but I felt pretty good in July. Now it is August 7th (my anniversay, no less - 6 years!) and I am already back to camo green wads. go figure.

I also had my consult for my port surgery (which really was sort of a waste of my time). My main concerns were placement and the fact that if my PICCS are not placed properly in my atrium (right?) I can ~feel~ them - this is hard to explain if you haven't felt a PICC from the inside, but it is a quite uncomfortable feeling. I've had to have them repositioned each time I've had them, so I didn't want to have to undergo port surgery twice if it wasn't place correctly the first time. But really, the doc was all like, "Ok, I'll leave it shallow, just remind me the day of the surgery." Okey doke doc.

He also told me to wear a tank top that day, a more "revealing" one to place the port in an area a little less conspicuous. I didn't have the balls to ask if he would make my incision in the shape of an S or a star or something, but I am going to, the day of the surgery. My step mom, who is also a surgeon, looked at me like I'd grown a third eye when I asked her if she would do that for a patient, so I am not holding out a lot of hope.

Also, the dude says he wants to use a general when I get it rather than twilight me. My step mom said that this doesn't mean a vent, but that I will have some doodad half way down my throat to hold my tongue in pace or some business. I am going to call the doc back and ask about all this. she thought maybe he was worried about my breathing during the surgery - but why a general would make this a BETTER option, I dunno. I want to reveal: hey, yo, doc, I am not a narc virgin, you can HOOK IT UP and I will be just fine. But I keep that bidnez to muhself.

Ok, then the other big thang in my life is disability.

I came to the conclusion that I cannot go back to teaching. at least not full time, and not children. My main reasons for this are:

1)I got sick a lot when I taught and my susceptibilities to abx are getting fewer and farer between and so I don't want to end up on IVS all the time and then having to juggle that with school and kids etc.

2) when I taught I didn't do treatments. I know there are plenty of people who can handle this, but I can't handle treatments, kids, housework and work work - something would give and we all know it would be a treatment.

3) I do qualify based on one of the three qualifications, so why the hell not try? The government says I am sick enough, so I thought I needed to get over it. with out the added stress of worrying about it all (money, esp)and trying to juggle odd jobs all the time (babysitting - not a health beacon job), I might be able to take even better care of my health.

But I did/do have some guilt as I know a lot of people a lot sicker who worked a lot longer under just as trying circumstances. and I have always prided myself on being a rather tough cookie, so some part of me thinks i am copping out or giving in.

and then, I had my first encounter with bias about it.

My son has a friend whose mother is trying to get disability. She was in an accident years ago and has a fused spine and some screws in her hips and stuff and so she is in a lot of pain daily. She has been waiting for a very long time for disability and is now working on getting a hearing.

I mentioned to her that I was hoping to get my case handled by the one of the advocacy groups available and told her about how things worked for CF patients as far as what was offered for help for us in getting disability.

She said, "you're so lucky. I'll trade you." uh huh. yeah. I have no doubt that her situation is miserable and there is no real "cure" for her pain; that it might seem unfair that I look relatively healthy and have groups available to help with my SSDI application - but it was a pretty insensitive thing to say. So I was like, "yeah, sure, any time you want a fatal lung disease with a life expectancy of 37.5, you let me know."

but then she went on about how she knew some people with CP who were "fine" and could work but didn't "just because they had cerebal palsy." holy fuck cat, come on. I realized a big thing.

If I go on disability I will probably have to tell people occasionally that I am disabled and therefore have to deal with this whole "you don't look sick" bologna, which I haven't gotten a lot of because I haven't been "sick" or aligned myself as a sick person. so I have to be prepared to reframe myself a little bit lest I get these kinds of comments. and that people will think I am milking the system or copping out or what have you.

I want to invite the non-Cf world to spend a day or three with me just to understand that I don't seem sick because I work hard not to. and even when I wasn't working hard to stay well, back before I was compliant, I was working doubley hard to hide my illness.

So today when I hacked up an olive from my lungs and panted up the basement stairs I wanted to call old girl up and say, "wanna trade now?"

We cradle together and fall down on our knees.

2010-06-24T21:07:00.000-07:00

I interviewed my husband today for my thesis. I am not sure what I am going to use from the interview, but I thought some of his memories and viewpoints were very interesting and insightful. We've been a little estranged from one another for some time now, though we're working hard on getting it all right.

Marriage is not easy. I envy people who make it look to be so, though I sometimes wonder the level of their intimacy and honesty with one another when it does seem so effortless. I wonder sometimes if I'm just not getting it right, making things harder than they need to be.

Anyway, here are some high lights from the interview. I was trying to type as he spoke, so every now and again I could not keep up and ended up paraphrasing, but for the most part, these are our exact words. Some of my questions are left out though maybe they will seem obvious. I just could not type fast enough to add my own words in so I assumed I would remember what I asked.

Gregg interview 6–24–10

Do you remember when I told you I had CF?

I remember the weekend we went my brother’s at the lake and you told me. I remember I did not know what it was. Had no idea what it was.
Didn’t know anything about it until you started explaining it to me. (I don't remember telling him atthe lake, I remember teeling him on th ephone in the kitchen at the duplex I lived in at that time)

What did you think after I explained?

I didn’t really start thinking about it until you started on your machine and stuff

That was after Marlee was born

I know

You didn’t notice me coughing?

Yes, but I didn’t realize how far along. I just remember the stories of your dad getting you into swimming and sports as your treatment

What did you think when I coughed when we first met?

I thought you were laughing?

All those times?

No but at the onset of it

After getting the vest what did you think?

The things you had been talking about kinda, not hit home, but made it more “here it is” this is what it is and, "I have to do this as the treatment for what I have," you know, and it had to be a regime, you had to do it. I understood you had to do it.

Did it annoy you?

No not at all.

Did it scare you?

No I wouldn’t day that it scares me because I know you don’t have to be pushed to do it, if you had to be constantly reminded, that would make it more "do or die" but that is not your make-up. you know what you need to do and you don’t need to be necessarily pushed. Now running or any kinda exercize outside of that, it’s a little bit different, but I think you knew that all the years of not necessarily ignoring it, but not thinking it would not happen to you, reality set in for you too, you know, so you just kind of adopted it as a way of life.

Do you think differently when you hear me cough now than you did before?

Like eight years ago?
Your cough is different, you cough less at night.
We can’t wrestle around like we used to, we can’t grab-ass around

I feel like I can do more of that stuff now, because I actually do treatments now, but you don’t think so?

I agree you cough less. I used to be able to time it.
Well, I knew I know when you are going to stop coughing, I know when this is the last time she is going to have to clear it out and then she can relax because I can just tell by how you cough if you’re getting it up and out.
I’m not scared for you.

But I’m gonna die. nobody has "survived" CF or not died from it iunless, you know, they got hit by a car or had a transplant and it worked good like my uncle. But then you have Eva and Paul and all these other people over here

I’m not scared for you, I don’t feel , you know, it’s like that newspaper article I read about special needs kids like that little boy, I felt sorry for him because he will never have a functional life. you still have a functional life. I’ve never thought about your life being any different than it is today because I don’t want to think about that. it’s just not how I – you know, it’s not that it hasn’t crossed my mind, but that is not my everyday thinking. I know things will change for the worse, that thought is in my mind, but it’s not constantly rolling around in my head.
When you go on IVs, the first dose is all I think of, I get into the midset of: ok here we go, we have to get in the mindset and after that, it becaused normacly and I know what we have to do and what you expect from me. But I don’t worry about the next time you have to go on IVs.

I am just under the mindset of take it as it comes. I am better with reacting to something than preparing for something that is going to happen anyway.

Maybe at some point in this thing I am going to have to change the way I think about it, but I am not to that point yet. I am not at the point where I need to panic. there is a fine line between panic and concern and I am always concerned about how you are doing, but there is a fine line – like your mom, I mean, she means well, but I can’t think like that, it would drive me crazy. I couldn’t do my job and worry about the things that are going on. maybe I just don’t have the mental capacity to give as much attention as other people give to it and be able to handle all the other things that are going on, I don’t have the mental capacity…

I just prioritize and you are the most important.

I remember when I had to take Marlee and they were coming over with the vest…you were still nursing. she was little and you didn't want her here while you learned how to do it. I took her to the mall.

you did? the mall? I don't remember that.

I remember your first IVs, staying up until 2 in the morning the first night and you freaking out because we couldn’t get it started.

We had the pole

That was for the one, and the other one was the ball which you could carry around, but the one for the most part you sat in the kitchen and did it. and I remember all the hoses and shit.

Anyway, as I feel with this entire blog, this is probably more for my own fascination than anyone elses, but when he said he used to be able to time my coughing in knew when I would be done, for whatever reason that meant a lot to me, let me know he really has been present in all this, albeit silently quite often, but still, here.

win big, mama's fallen angel

2010-06-09T20:03:00.000-07:00

Thesis work. I am posting for my own records, but also I'd love feedback. I need a draft by Aug and I am trying to get a good 20+ pages to my director before next week.

It wasn’t until sixth grade, my hair crimped, a black guns-n-roses t-shirt, when I reluctantly followed my mother for the last year to M Elementary school to meet my new teacher, that I remember becoming aware of what this meant. What CF meant for me. I smiled nicely at the teacher, checked the class lists to make sure my BFF Lo was in my class. But I felt something different in that meeting and so later that night I snuck the “A Child in your Classroom has Cystic Fibrosis” pamphlet from between the Salem menthol 100s and bottle of my enzymes in my mother's purse and crept into my room. I had never read that pamphelt or much else about Cf before that time
“CF is a genetic disease. It is the most common life-shortening disease among caucasions; people with CF are living longer than ever often into adulthood (age 18 and older). Thick sticky mucous builds up in the lungs leading to recurrent lung infections. Malabsorptions leads to poor growth, stomach cramping, and frequent, loose, foul smelling stools. Other complications such as liver problems, diabetes, and reproductive system effects can occur.”

How could I look at myself: a girl people often remarked as lovely and assimilate words like sticky mucous, foul stools? It wasn't those things. I was those things. I had all the issues listed, but I didn't want anyone to know. To associate me with those words.

Some little part of me died that day. The ignorant part. Maybe the girlie butterfly part, if I had ever had one (I was, after all, a girl with crimped hair in a guns-n-roses t-shirt). I’d already had a rebellious streak. I was already irritated with the doctors who said I should not have a cat, who said I might start my period later than my pers, the constant flu shots and breathing tests. The social workers who meant well but who spoke in such a maple sugar sweetness that I simply wanted to bite them.

But that moment, reading that pamphlet, I felt the hope of a normal life being sucked away from me and in that vacuum I grew talons from my hands rays of red sprouted from my eyes. CF would not take me. I would not be thick and sticky and foul. It wasn’t a war I was waging, it was an absolute obliteration of all expectations. It would be a disinigration of every word every written about Cf in relation to me. I would not be what they said. I would need nothing. CF was an earwig and I was a shoe. If I'd idolized the rock goddess heroines of my MTV youth before, now I would become one. I would be shiny, golden, cherry red lips, a girl who was beautiful and desirable and wild and who in her three minute moments of MTV glory would never cough or shit or be anything other than perfect.

I became, at that moment,twelve year old girl with CF who didn’t have CF.

all writing on this blog is copyright of Shannon North

I can't dance, I can't sing

2010-06-02T09:28:00.000-07:00

I'm not sure what is going on.

My daughter caught a cold from the baby we babysit about two weeks ago. I caught the cold from her - somehow three year olds are great at coughing in your face and sneezing on your food.

Anyway, we both ended up on antibiotics: amoxicillian for her, cipro for me. I am also on my colistin month. I asked for three weeks of cipro. I also asked for a referral to get a port. I have the cipro, buy nary a word about the referral, though my clinic NP did say she thought it was a "great idea."

As seems par for the course when I get sick, I can't seem to exhale easily. It's the darndest thing. Air comes in OK but on the way out it is this wheezing darth vader ujjayi breath. and I'm tired. sooo effing tired. I don't think I am desatting just based on what people who do desat say about it, and I have not typically had trouble with my 02 sats....but I have no idea what my FEV1 is right now. I'd venture to guess it is back in the 50s since stairs have become a trial again. Who the hell knows, it's not like I can be seen when I am sick, my care is all over the telephone.

I've only been on the cipro not quite a week, so I want to give that a chance. Also, I tolerate colistin rather well, but this wheeziness is very reminiscent of how I feel on TOBI and I wonder if my already irritated lungs aren't liking the colistin as well as they usually do. I seem to feel better BEFORE I do it rather than after. I don't know. I'm bummed.

It is so tiring to not feel good. I forget about this when I am doing OK. There must be something different about this bout of illness though because my husband has been nothing but nice and helpful. Maybe it is because I held his hand to my chest the other night so he could feel the crackling and vibrating in there, or maybe just that he can see me pause while doing a simple task like unloading groceries to catch my breath and cough and cough and cough until it looks like vessels will burst on my head and my face turns rasberry and yet NOTHING wants to come up. bah.

I've been self medicating to make it through the day but I wonder if that isn't doing more harm than good...? It works for now.

No more drowning in my sorrow, no more drowning in my fright

2010-05-22T10:00:00.000-07:00

I've always had sort of this wierd obession with death. I'm sure that sounds bizarre to a lot of people...though maybe not so much the readers of this blog. But as long as I can remember, I've felt connected to death. I don't know that I have the time to properly put that into words. But here is an example: I like funerals. Not in some wierd morbid Lydia Deetz kind of way, I don't like death because I like it when people die, but I am attracted to death in how it strips people of all their bullshit. Layers come off in death. Grief is a raw emotion. It isn't that it isn't tragic, I don't want to make light of the losses people suffer in death, especially to a readership of primarily lung diseased young adults, but people seem most "real" to me in their saddness.

One of the problems i have always had in this life is this pervading sense of loneliness. As I've gotten older, I have often attributed it to Cf and the isolation I felt in the disease for so many years, but even now that I am not as isolated because of my internet connections, the lonley bug still hits. It isn't always lonley in a bad way, it's more a trouble connecting with the world. I once wrote:
How do you explain lonely? You have to slow down to do it. I don’t think lonely people ever move fast, that’s part of the problem. You can’t keep up so you give up trying. It’s the way you can be in the middle of a group of people, but you’re the only one trying to hear the background music.

I feel like I can't connect with the world because so many people seem so full of shit. Sometimes I feel like it is clear as day how people are hiding from themselves. You hear them talking but it's almost like "Annie Hall." You can see the meta-thinking inside thier brains, excpet it seems like THEY have no idea. I realize this is already riding the edges of not making sense. I always default to my old standard, you just have to "get it."

But I am not afraid ot talk about death, I am not afraid to cry. And I feel this connection to saddness and grief. I think maybe, besides the losses of people I've loved, I have always held onto this slight sense of grief for myself.

Yesterday my stepmother and the hospital she works with hosted a "Grieving Out Loud" seminar given my a singer named Cindy Bullens. I hadn't heard of her until my stepmom started listening to her after the death of my stepsister. I wasn't all that drawn to the music either, mostly because it just isn't really my style. the workshop was differnt though, it was the story behind the music.

Bullens lost her 11 year old daughter to Hodgkins disease and from that loss came an album called "Somewhere Between Heaven and Earth" and from that came this workshop on grief, which really isn't a workshop at all but just Bullens' story.

At these types of events, you get all types of people: those who just want to be seen, those who truly want to learn, those that come for the free food. I stood rather silently at the reception/hors d'ouerves prior to the workshop just taking people in, watching, doing my alone buisness (part of lonley is my hatred of small talk, if we don't get to the meat of it right quick, I don't want it).

Bullens dips right into the meat of things with her presentation, immediately taking you into her grief in losing her daughter. Coupled with her music, the experience was intense. And that is why i feel an affinity to death. The room was connected, we were sharing our pain. Not everyone there had lost a child. My thoughts strayed from my stepsister Kelly and my stepmother's experience in losing a child, to Paul and the way his death took me to my knees in a way I'd not expected, to the horror of losing my own children, to the fear I think my parents must encounter when they think of losing me.

But it is fear that holds us back, keeps us quiet, trips up our dreams. So when death bubbles that fear up to our surfaces I think we forget about all the other things we are afraid of. So funerals and shared encounters like this workshop sometimes feel to me like the few times where people are truly real. And there is a beauty to that. There is a beauty in the release of a person into death, not by their dying but in our letting go. I think the letting go is the truest act of selflessness and the scariest.

While I feel powerfully about these expereinces, the connections we make in these moments, I can't pretend to say that my own fears don't hold me back. They do.

I can talk to people about death. I can ask them about their loved ones, talk about my own. I am not afraid to say the word 'dead.' I'm not afriad to talk about my own death. but I have not mastered letting to and I have not shed fear. the workshop brought all kinds of feelings about my own mortality and death to the surface and I am not afraid to examine them here in the safety of my blog, but i was afraid to talk about it last night. Not afraid to talk about my death. Afriad to talk about its likley root. I still have not mastered CF talk and I feel it holds me back in some ways. That perhaps for all my talk about the connectedness of sadness and grief I can't let go of my own fears and really tap in. It made me wonder just how full of shit I might really be.

What does my "Annie Hall" meta balloon say??

and where I am, thou shall abide

2010-05-21T06:59:00.000-07:00

Grieving seminars for parents and physicians to be held this weekend

This is my stepmom and my stepsister Kelly's story. She died 9 years ago this week. She was also a tissue donor in death. I had never even seen the news coverage of her accident until this news story. Watching it brought back a lot of memories. It is amazing how fresh these wounds can be even almost a decade later.

I read the news today, oh boy

2010-05-17T10:03:00.001-07:00

I think that probably 90% of my blog readership is from other cystics. But, I know there are a few friends who have stumbled upon it and I get tons of people from various foreign countries who pass through when my blog is the "next blog" on the blogger reader list (or however that works?) - so, in light on what I've seen on some other people's blogs, because it is Cystic Fibrosis Awareness month, AND because my husband and I are TOYING around with the idea of SSDI (more on that later), I thought I would present my CF day. It is not as rigorous as a lot of folks out there, but certainly my time is compromised by el diseaso.

Here is a weekday schedule:

take azithromycin (MWF) prophylactic

Vest. 20 minutes with simlutaneous nebulized hypertonic saline and albuterol. Generally the nebs take longer than the Vest and so this routine takes about 30 min.

Treadmill. I run apprx 20-25 min, somewhere between 1 -1.5 miles. On a good day I run the whole time and cough minimally. On a bad day I run/walk, and cough so much I have to hold my crotch so I don't pee my pants when I cough but I usually do anyway and this is why I do not run in a gym. I run 3x/week.

inhaled colsitn in the eflow nebulizer. This thing is supposed to be fast, but mine for some reason isn't, so this takes about 15 minutes to inhale (while holding the handset which means if I do anything, I do it one handed)

after this it is important to immediately clean the elfow parts. I do this in two steps, first the metal head piece, then the plastic parts.

lastly I inhale my advair, 50/500 - sometimes I do this before the colistin, but a lot of times I forget.

eat. I take 4-6 Creon per meal to help with digestion and absorption of my food. I also take 2 ADEK vitamins and one Vitamin D with calcium. Due to osteopoenia I am on 2800 IU of vitamin D/ day. We hope this will work to raise my vitmin levels and keep further bone weakening at bay.

Saline nasal wash with my neti pot. I use Neil med packets if I have them or just regular old sea salt (from my friendly natural grocery store).

squirt of Omnicef into the schanz to help keep sinuses open.

now it is somewhere around ten. If I need to shower, I do it, otherwise I get dressed and then gets all kids I have ready and my day has begun! I am pretty free to do what I want unless I have some sort of doctor appointment (CF clinic, ENT, rheumatologist, etc).

The only real reminders of CF throughout the day at this point are my cough and the enzymes I take EVERY SINGLE TIME I EAT!

After dinner and kids go to bed, routine starts up again:

vest/hypersal/albuterol - 30 minutes
eflow colsitin and cleaning routine
inhaled advair 500/50

this is the part where I should tell you I boil my nebs everyday, but the truth is I don't. But today I will - so add another 20 min or so for boiling nebs.

If I think I am getting sick I will do another nasal wash before bed.

other randomly added meds that i use when need be and can, in some way, be related to CF:

ativan
ambien
advil
narcotic pain killers
mucinex
zantac/tums
miralax
metamucil
acidophilous

None of this includes what I do if I am sick - this is a healthy day at 70% lung function. No, it isn't horrible, but it is demanding. It does require some discipline to do treatments (and exercize) when I REALLY don't want to.

take another little piece of my heart now baby

2010-05-14T17:19:00.000-07:00

IOPO talk on local news

I went to my first IOPO (Indiana Organ Procurement Organization) presentation today. My stepmom has been doing this for several years with another woman from my clinic who is now 10 years post TX. I'd never heard my stepmom's presentation and I have never met Maria (though we have the same ENT and I know a lot about her from him - so much for HIPPA!!)

It was really hard to listen to my stepmom talk about the day my stepsister died. I'd really never heard her tell that story before.

It was May 25th, 2001 and I had put my son to bed, he was just 18 months. The phone rang. It was my younger brother. He said, "Kelly and Dan have been in a car accident and you need to get to the hospital." I asked how bad it was. He answered, "It's not good." I called my mom who rushed over to watch my son, affixed a silver crucifix to my neck and left. I'm not overly religious in a Christian sense and oddly enough, at that time of life I was really turning to the music of Bob Marley for spiritual inspiration. But the crucifix seemed appropriate and that action stands out in my mind. As a quick aside, Bob is not all ganja and beaches, you should take a listen, also, Rastafarianism has Christian roots. Anyway.

When I got to the hospital, I asked at the desk for my stepsister assuming they woud lead me back to an examination room where maybe she'd be hooked up to some monitors. But when they looked at one another and then took me to a small room where my step mother and stepbrother and a doctor sat silently, I knew it wasn't good. When the chaplain walked in, I said, "Oh God." and I knew. Kely had died from massibve trauma when the side of the car she was riding in was smashed up against a tree. Kelly was 24. She was also a tissue donor. They took her corneas and her skin, I know for sure, though I think they may have taken some bones as well. She died on the way to the hospital and wasn't a candiate for organ transplant for that reason.

It was also awakening to hear Maria's story as a cystic. Although I was in tune with her story as it is one so many of my friends are living or have lived nearing or in the throes of end stage lung disease, it still felt like this neon reminder of the path that CF inevitably takes.

I had asked my stepmom, who included my CF story in her talk - one daughter who was a donor, one who may likley be a recipient, not to call me out. It was odd to hear her refer to me in the third person though. But then when Maria spoke (who I had just met that day) I got the big fat call out when she referred to me (and pointed!)a few times in her speech. But you know, it was OK. I realize that is how far I've come in this. I was Ok with having a class of 50 teenagers look at me as the sick Cf girl.

I then registered myself online as a donor. I have been registered on my license since i have been driving, but I never did the online registry. I figured I should. Even though I usually feel like my future is neatly mapped out and the ending has CF stamped all across it, I guess you never do know.

I'm in with the in crowd, I go where the in crowd goes

2010-05-05T14:39:00.000-07:00

I'm in a funk. I know, I know, I am always in a funk. The truth is, not really. But the past 6-8 months have been not so good and I tend to write when I am down rather than up, it is my catharsis.

My trip to Boston was amazing. I've never done a CF meet up, never went to camp or any retreats or conventions. I met Paul and that was amazing in itself, but to look at the picture of 15 CFers in one place takes me breath away (bad cliche, sorry). It was just so awesome, I was overwhelmed by the beauty of it.

Standing at the cemetary, looking at Paul's name on the grave and the ahses and the purple rose and the faces of all the people who came to celebrate his life moved me in a way I can't explain. And maybe, just maybe, it made me a little less scared about CF. Which makes no sense at all since I put myself in the most germ precarious situation of my life - but you get the point. Not that I am not still frightened of the gravity of Cf, because I am. While we were in Boston we lost two more, CF is a nasty mug. But I feel secure in the comminuty I have chosen to participate in. The Cf community as a whole is wonderous, but I don't know every CFer on earth, only the CF community I am a part of, the folks in the picture and some lots of other special ones who weren't there for whatever the reason. You guys have my heart.

I feel like I carry a lot of baggage around from Cf and it manifests in some not-so-nice ways sometimes, so to know I have the support of my CF community means the world to me. Truly, no one but you all can understand. Not for lack of trying, but you gotta have it to get it.

gimme back my bullets

2010-04-23T13:17:00.000-07:00

I know I've been a piss poor blogger, but I've been in a funk and not had much of interest to say. I've written a bunch of entries and then opted not to post any of them. Sort of the idea "if you can't say anything nice...."

I've been toying with the idea of putting my kids in the car and running away. All talk, of course, but seeing as I have family in CA, NM, and NJ anything is possible. I wish it were easier, taking off and heading for the hills, but all these little issues like money, insurance, and child care keep cropping up in the middle of my day dreams. I just feel like I have so many ideas that I don't act on because I let fear and responsibility and expectations stand in my way. Not that it's all bad to be a nice responsible girl and all, it just isn't all that exciting. So while showing up with a coupla bags a thousand bucks in my pocket on my brother's doorstep in San Diego sounds like a romantic idea, I just don't know that living in a trailer on the beach with my kids and peddling crocheted goods for a living is quite going to cut it. Not when creon alone is $2800 without insurance. um hmmm.

One week until Boston. I'm excited, nervous. There are are so many factors going into this one weekend that I find myself running a gamut of emotions. I'm looking forward to it all though.

Here is a snippet from the thesis that will never be because my faculty director never gets back to me:

They could never understand. I couldn't be that daughter, perfect. I was tainted: mucous instead of marvel, shit instead of shine. I had to defy the identities my family wanted me to have: warrior, defeator of prognosis, small but mighty, as well as the identity my disease gave me: sickly, weak, dying. I would be imperfect rebellious wild strong. I wanted to resist definition. Look what my body would do, what I could stand, how I could thrash against every expectation and thrive.

it's easy - all you need is love.

2010-03-28T09:03:00.000-07:00

I haven't been able to put my thoughts together for a proper post yet. Eva's death has elicited an entirely different reaction in me than Paul's, and different yet than many of the others we lost this past year. I knew this was coming, I listened when she said goodbye. I was able to say a proper goodbye to her. Our friendship spanned many years, reading one another's journals, some mail exchanged, though we never met in person. Yet, no matter the exchanges, I don't think losing people we love ever gets any easier.

I had this feeling though, about the upcoming trip to Boston. This trip is for Paul, to honor him, but it will be cathartic for us too. Csthartic to say our goodbyes and also because I feel after a year like the one we all have just endured as the survivors we need to be together. I need to be with people who understand how these losses keep coming, like punches to the face. and who understand why I cannot NOT be friends with people who keep dying. I have to be. my life is inexplicably intertwined with all of yours, I can't turn away, though I sometimes want to. I want to go back to my safe world of denial where people don't die of CF. At least no one I know does.

But they do. They die of Cf and they die from TX and I don't think it is ever going to get any easier.

I feel I learned from Paul to love the Cf part of myself and from Eva I learned to let others love me as well. Such important lessons from such amazing people.

I know you two didn't really know each other, but I hope you're somewhere together singing Beatles songs. All you need is love.

high hats and arrow collars, white spats and lots of dollars

2010-02-21T09:22:00.000-08:00

MY friend Lo turns 33 this week and we celebrated last night. Lo is one of few who is down with the CF thang, and sicne I know she reads this blog, I thought I'd give her a B-day shout out!

I got more to say about lots of stuff. But now is not the time.

this is what I remember most about dying

2010-02-12T06:34:00.000-08:00

From "Controlling Death - Compromising Life":

"Choosing not to transplant means learning how to live with limitations and uncertainties that doctors cannot make go away. These limitations and uncertainties are embodied in the chronicaly ill, the disabled and the dying - they symbolize the failure of scientific medicine to control nature. In an ableist society, physical limitation, pain, and the loss of abilities stray too far from the cultural ideal of the body. For the able bodied, the disabled are the Other, a threat to life's narrative representing uncertainty, doubt and incompleteness...Technologies of normalization are instrumental to the systematic creation and control of "anomalies" in the social body (Foucault 1973, 1980)...within these technologies, the body becomes a matter of norms, averages, and deviations, transformed into something calculable and determinate rather than something shrouded in mystery and determined by fate or chance." (Maynard 214)

Yeah. so.

So it is somehow not OK to talk about death. To say, I choose not to live. I don't mean suicide, though I think it fits in. I mean simply the idea with Cf that we would want transplant. It isn't that I don't understand why we choose TX. My uncle is nearly 14 years out. I get it. Fourteen years is a huge chunk of life and what he has accomplished in that fourteen years compared to the 44 before it is great. He feels great. There is hope in that story and the stories of so many others. But hell, what about all the stories that don't end that way. Those are the ones I'm interested in because those - far more the norm that the others - are NOT the ones were suppossed to look to.

Positive thinking has never been my forte. I don't mean to say I have no hope. It is not a nihilitic approach that I take to this life, it's only that idealism makes me nauseated sometimes. I like things that make sense, that can be proven. It doesn't mean I eschew all things spiritual for an entirely materialistc outlook (as my own father might have you believe), it's just that...I don't like having my heart broken and my heart can't break if I don't let it believe in that which might not be true.

Never fear, despite how I try, this heart breaks daily. It breaks today. It's been broken for months. years maybe. and that's OK. It isn't sad to live with a broken heart, it isn't a bad point of view. It's just one that you have to get. If you don't "get it" then you just can't understand and I don't know that I have the words to show you. But Paul Simon does, "losing love is like a window in your heart, everyone sees your blown apart, everyone sees the wind blow."

I think we live more fully by allowing ourselves to feel the pain of the world rather than pretending "everything will be OK." No, it won't. and it's OK that it isn't OK. Except we're not suppossed to talk about it. I'm not supposed to tell my family - my family with the history of a CF uncle 14 years out of transplant - that I might be OK with dying without TX. and yeah, I know, I have kids. I owe it to them to try, right? But do I? Would it be so bad for them to witness the death I was meant to have, the CF death? Versus the death that science could give me, the TX death? And is this all easy for me to say, simply because I don't feel the presence of my own death right now?

Because I am pissed off that I keep losing people I love to death. Because in my own way, the ultimate FUCK YOU to CF might not be fighting the death but giving into it with grace. Turning the other cheek and saying to this body, "I forgive you, let's go now."

I think I can I think I can

2010-02-04T11:01:00.000-08:00

La clinica. Things is good. FEV1 71%, FVC 90 (wow), 25/75 33%. Looks like this l'il engine is back in business.

Synergy tests and MAC results were not back yet. My guess is a no on the MAC (I hope) since PFTs bounced back pretty easily post abx. I hope so. I am in no hurry to be on long term abx. Cepacia was a no. I figured it was, but it was nice to hear anyway. I hope the synergy results show some good options though, since the working antibiotic list seems to diminish with each culture.

AND, I ran for 10 minutes straight this morning. I've been treadmilling every other day for three weeks routinely now. I had this revelation about running. Fear. I was afraid of it for some reason. I'm not sure i can explain the reason but only that I recognized it. I pushed past it. I'll be running a mile in no time - something I have never really been able to do.

I remember in my first yoga class years ago, one of the girls talked about fear. and I was like "Fear? In yoga? whatchu talkin' 'bout, Willis?" but that comment always stuck with me, and I feel like I get it now. So at that moment where I want nothing more than to STOP RUNNING, I keep going. And amazingly, I live through it and get a second wind of sorts. It's pretty cool. This is one of the things I have felt the proudest of, for many reasons: because I hate running though I have tried to do it sooo many times over the years, because it is hard to keep doing something you don't like to do just because it is good for you, because I am seeing the results. I have had the idea of a triathalon in the back of my head for years now and suddenly I can actually imagine accomplishing such a thing.

So a few posts back I started using some writing prompts from a magazine I read called The Sun. I don't think I had an overwhelming response of participants (or any)joinging me in the prompt writing department. That's OK. But, offer is open again if you want to join in. This month's topic is "slowing down." Seems like a no brainer for a CFer, but you can take it where ever it may lead. I'll get around to writing on it in the next day or so.

Peace out, homies.

bring it to me, bring your sweet lovin,' bring it on home to me

2010-01-20T17:29:00.001-08:00

I was de-picced yesterday morning. This was the easiet (of the three) round of IVs I have had yet, and I was actually a little hesitant to have it pulled. But yet, that little undying denial bird just wouldn't let me request four more days. I do feel better, that isn't the issue. But the thought of getting sick again soon, of needing IVs in the near future (which would mean thinking about a port because I am NOT into the PICC-line deal) I mean, that was almost - almost - enough for me to say, hey! let's do another four days just for the fun of it! anyway, PICC is gone, shower taken, feeling better.

In fact, I am feeling enough better that I treadmilled Monday and today and actually ran at a decent clip (as much as I could, which isn't much at all) and there was no coughing (and thus no pants-peeing). so sweet. My energy level was almost back to normal.

Here was today:
7 - up, kids up, lunched packed
8 - vest, nebs, treadmill
10 - bagel with daughter
post office, fabric store
12 - lunch and playing and computer
1 - finished 1 out of 3 Roman blinds I am working on for the kitchen
2-5 sewed up a cute little skirt with some fabric I have had for a few months. Turned out great!
5 - cooked dinner, ate
6 - bathed kids, did homework with kids, cleaned kitchen
7 - vest nebs
8 - kids to bed
9 - me time, computer, movie? rum

so...not that anyone needed the run down, but I feel quite productive.

I was going to write about transplant, as that has been muddling through my head a lot lately, but I think that that will take this post in a direction I am no longer in the mood to entertain.

Just joined Netflix. Found a movie on there that I have had on my Amazon wish list for like 7 years. I thought it would never come to the U.S. That's right - FORIEGN FILMS. I love them. The first question my husband asks me when I ask him to watch a movie is, "Does it have subtitles?" But secretly, I think he likes them.

oh mom, I wonder when I'll be waking

2010-01-12T06:40:00.000-08:00

Things have been...meh. OK.

I am on IVs, tobra and aztreonam. What I enjoy is that each infuses over only a half an hour and the tobra is every 12hrs, the other every 8, so I get to sleep and I am not hooked up for an ungodly amount of time (like November's IVs of Levoquin which infused over an hour and a half and zosyn which was at an exhasuting every 6 hours). SO that has been good, makes it not seem too bad. Though I have not bathed in four days now and I look a bit slimey.

I did talk to my family and they have been helpful. My mom cooked a bunch of dinners for me so I don't have to worry about cooking this week. and my dad, well...he's convinced if I just accept god into my life things will be better. I know he means well, I also know he has no clue what I think about God, so we'll just leave it at that.

Still, people want to call me a lot to see how I am. I want to be grateful for their caring, I want to be, but when the phone rings I am loathe to answer. Because you know, people get tired of you saying you're not feeling well. So I just end up lying and saying I feel good even if I don't. Just this morning my mom asked and I said yes, I feel better (which in this case is true) and she said "well that makes me smile." and I know as a mom what she means, you worry when your child doesn't feel well. I do understand. But still, I couldn't help but snarking, "as long as it makes you feel better." I know I can be a shit sometimes.

Emotions have still been wacky, though I think even some of that is resolving.

I do think I feel better. My FEV1 was at almost an all time low of 52, and I still feel a little SOB which I worry is permanent damage from being sick for 2 months, but a lot less is making it's way up from the depths of my lungs, so that is good.

I am teaching a technical writing class this semester and so I am working on putting together a syllabus while still waiting to hear about my proposal for my master's thesis...so things are keeping me occupied, which is what I need.

Not much more to say, I guess.

Narrow Escapes

2010-01-01T12:10:00.001-08:00

I remember quite well typing “cystic fibrosis” into the search engine. I was at work, it was the fall of 2005 and I was on my lunch, maybe even my plan period. I was teaching 6th grade bilingual at a rough school on the west side of town. I had a small class, only about twelve students, and I loved them all very much. Often I was simply called “maestra” or more often than not, “mees!” Still, teaching is an emotionally and (for me, anyway) physically draining job, and I often used my lunch period to decompress, relax. So I don’t know what led me to search for CF that day, only that I did.

My first post started out like this: I am new here and I have been posting like crazy because I never talk to people about my CF and the few people that I know with it are "sick." I have read about so many healthy people here, it's great! I was 28 and sort of oblivious to the role that CF was playing in my life. I thought I was healthy, I thought I was “different;” I didn’t even know how to read my own PFTs. I was trying to get pregnant. It had been almost a year of trying to conceive with no luck. I already had a six year old boy, one whose conception took very little effort to achieve. I’ve always felt each of my children’s births had their own life saving purposes in my life, slowing me down, making me more aware of my mortality, but I wonder if something inside wasn't nagging me to take notice. Something had changed between age 21 and 28, something was hindering this conception or perhaps there was some reason, unbeknownst to me, why it wasn’t happening easily. I have no answers to why, but I know what happened that day: the penny dropped.

I have often wondered, what would have happened if I hadn’t put myself out there that day? Where would I be in the CF game? Over the four + years since that day, I have started using a vest, nebulizers, inhalers, got updated on Ct scans and lab work, had sinus surgery and had IV antibiotics. All things that were long overdue but that I learned were prophylactic rather than defining. I’ll never know, of course, what difference that first post on the CF forums made in altering the path that I am on, but I feel deep inside that it was purposeful rather than coincidental. Knowing not only the health benefits I’ve reaped since that day but the emotional and spiritual advancements that I have encountered as well, I believe fully that had I searched for “Urban Outfitters” or “Captain Morgan” that fall afternoon, things would be incredibly different.

**If you have not read the post below this, please do. And write your own Narrow Escape story...use the topic as freely as you wish!!**

I heard somebody whisper, "please adore me"

2009-12-31T22:45:00.000-08:00

Every month for about the last ten years I have been subscribing to a magazine called The Sun. The magazine hosts a collection of interviews, poems, and narrative pieces, both fiction and nonfiction. I find it to be one of the most honest collections about the human experience as I have even encountered, though often readers complain it is too dark, too sad.

Within the magazine, there is a section called "Readers Write." Each month the magazine suggests a topic and readers write in about it, much like a warm-up exercize in any creative writing class. What results is an interesting amalgam of experiences: sad, funny, some true, some maybe not.

I am set to start writing my master's thesis this spring and my proposal has something to do with Cf (not ready to get too into it yet, it is an ever changing endeavor). In light of that, I have been rereading old journals and blogs (I have been writing online for 10 years as well!). I thought tonight (this morning), instead of the same ole same old New YEar's blog, I would take this month's Sun Reader's Write and use that as a topic to start focusing on how I want to go about writing this paper, to give this blog a little oomph, and to also challenege you, o blog reader. I challenge you to address the same topic in my comments or on your own blog. I think it might make for some very interesting reading, and no, it need not be Cf focused...just go with it! Even better yet, link here to what you write (if you wish, or hell, don't).

So this month's The Sun Reader's Write topic is Narrow Escapes.

It's late and I need to sit on this topic for a minute. Happy New Year

this whole damn world is on fire

2009-12-20T18:54:00.000-08:00

My FEV1 is 58%. It was 71 in November and 74 before that. 25/75 was 22, 37 previously. The question is WTF? I really want to blame the TOBI my doc has me trying in place of colistin, as i recall the last time I tried TOBI, a la 2006, I was at 50% and felt much the same I do now, tight, congested, and SOB.

My fears are 1) that the acinetobacter I ~maybe~ cultured last month is fo' realz, 2) that this is somehow related to H1N1 and maybe permanent and c) that i have to accept a new baseline that doesn't start with 7_.

My fears are coupled in a few other ways, too. Several people are waiting or new lungs, one beautiful girl just got a set...hope abounds in this, the season of hope. and I sure don't want to rain on anyone's parade. But man.

You know what got me? this. This story about a girl I didn't even know. I just felt pissed off. I guess I was in the right mental space to have this affect me the way it did, in light of the recent carnage seen in Cfland. But I just felt delated: that there is hope in tx, that there is such devastation. I remember Paul telling me once something along the lines of he'd wished he'd never let himself believe there was another life out there wiating for him, those few good months he had. I heard him, you know, but I didn't really understand. I mean, I thought I did. But for whatever reason, that article really put the spit in the cup for me.

I always assumed I would get a tx, I mean ever since my uncle had one and did so well with it. The dude is 57 and 13 years out - just doesn't get a whole lot better than that. I thought that was the way it was. Tx and wah-la. I know different now...

and so I haven't been sleeping well. Well, no, I have, but it is induced in some way - because I can't get the demons to back off. These little green guys that come in and stare at the back of my head when I'm trying to sleep, whispering all the nasty fears that I know we all have right into my ear.

My daughter crawls into bed with me pretty much every night. I just stare at her. She loves me so much, and the thought that I could leave her motherless before she is grown is so suffocatingly devastating I can hardly live with myself.

Which makes me feel, that when the time comes, if I make it there, I will have to try for the TX. Though I don't know that I want to. I don't know if I can handle smashed up hopes. I don't know how to change my thinking, either. and the one person I would have talked about all this with is gone.

so, fuck.

all the songs with goodbye in them are too cliche for my title

2009-12-15T07:04:00.000-08:00

I'm not saying this is my last Paul post, I just don't work quite that way, but in my process, it was time to write y letter. I debated keeping this private, but if i can't share it with people who understand...well...??

Paul,

I haven’t been able to write this letter yet, because I am not ready to say goodbye. I hope you heard me this morning when I spoke to you while getting the paper. I hope that the day I learned you died, when I “felt” you in the kitchen, I hope that was real. You’re the first person who made me want to believe in heaven even if you didn't.

I remember your first pms to me at Cf.com. I had posted about ahimsa, and we chatted just a bit. You invited me to your time, though I wasn’t really listening. Then you pmed me in chat a few times when you were listed. Remember you told me how they asked if you had tattoos and used drugs as if they were mutually inclusive? On my thirtieth birthday you told me you were glad I was born. And you shared a birthday with my son, which I always found auspicious for us!

It was after tx, when I’d added that playlist to my blog and you gave me a cheers for liking Freakwater that we really started connecting. We talked music and Cf denial and loving ourselves. You told me of meeting the Buddhists, when you saw the flyer. You actually still chatted with me all the nights I typedlkie this an expctyedf you tobe abel to r ead whatI wrtoe.

I remember we talked about “getting” it, and you said, “your name is ‘wanderlost’, how can you not get it?” My heart just filled with pride, to know we “got” one another. We talked a lot about being lonely. We talked about our dads and picking out our own switches, about past lovers, and marriage. We joked about that “other life” we might have had…except I wasn’t really joking, I think you know. You know I stalked you, and while I never hid in a trashcan to find you, I always hunted you down online.

I will watch for the thugs at DQ, I will always remember when we dressed up as dogs in an overcoat at the movies, I'll try to stay out of the hole, I will take Cf on my own terms.

I remember how worried I was about you last fall with the rejection and the Pepe stuff. That is when I bought the Ganesha, which I was so happy to be able to give you at the Heartland and which you graciously accepted despite the germ thing. Thanks for that.

I wasn’t around as much lately, I know. Always busy. And the box wasn’t working right – that is the biggest thing I hope you know wherever you are, that I just couldn’t get that damn thing to work.

I wish I would have come up when I’d offered. I would have even thought about doing both things you’d asked, even if you were joking. I told you not to take the one back, and I still hope you meant it. I know you were too sick to go out and still didn’t want my bugs in your apartment, but had we known, we could have made such a time of it!

I love you Paul. You know I always carry a lot of worry and regret, but one thing I can feel good about is I know I told you I loved you, more than once. I think I remember the first time I said it, instead of my usual “much love.” And you told me, too. For that I am eternally grateful.

I don’t want to say goodbye. So I won’t. I could say "knight shug," But I think I’ll say what you always said when I had to go, which kind of irked me:

Later.

what a beautiful piece of heartache this has all turned out to be

2009-12-14T12:00:00.000-08:00

I left when it was still night, the moon was out. I made a “Paul mix” for the drive: some of his songs, some we’d shared a liking for, some that reminded me of him. I headed west. When the Chicago skyline came into view it was Neko Case “I wish I was the moon tonight.” Paul told me he used to have Neko Case’s number. I don’t doubt it one bit.

I was super early, so I pulled into a Starbucks and gathered my thoughts. Tears had threatened and spilled the whole drive, and choking down my granola yogurt was no better. I went over what I was going to say. Paul’s mom asked me to say a few words during the service, as I was the only representative there who knew him in the online world. Public speaking is not my greatest achievement. While I don’t mind it, I do get nervous and tend to talk quickly. Further, crying in front of people is something I like to avoid.

I entered the church and was immediately greeted by Paul’s mom. She introduced me to the family and showed me the pictures of Paul they had gathered for the ceremony. How fun! Paul as a baby, Paul going to the prom (can you imagine!), Paul’s travels. In some pictures, I barely recognized him, it wasn’t the Paul I had ever seen, others were certainly the Paul Q I knew. I started to cry, of course. I cry all the time, but Paul’s aunts hugged me, we cried together.

The ceremony was a Catholic mass. If you’ve been to a funeral, you know how they go. Cousins did readings; we sang “Ave Maria,” read a psalm. There was a very cool moment when was all joined hands, down and across the aisles to say the “Our Father” and I could feel all the energy being shared. I love that stuff!

The speakers were two of Paul’s friends, his brother, and me. The first speaker told a story about picking Paul up at the hospital once, and how walking in he heard a guitar strumming and this deep Johnny Cash voice booming out of the hospital room. He said you could judge a person by if they “got” Paul or not. I was so pleased to be one of those who “got” him. I was next.

I gave Paul’s aunt the paper I spoke from, but the gist (Paul taught me it’s ‘gist’ not ‘jist’ btw) of what I said is this (from my starbucks draft):

Hi, I’m Shannon, I am a friend of Paul’s and like Paul, I have CF. We met about three years ago on a Cf website. Paul, or Q, as he was known online was already a well-known figure in the CF world. I was just coming to grips with the reality of the disease, and Paul reached out to me immediately. From there our friendship grew roots much deeper than just CF.

I got to spend some time with Paul in “real life” and one of our meetings was in my hometown of South Bend. I met Paul at his hotel and we walked to get something to eat. As we walked, we were just joking around about life and CF and how we both had country singer ringtones set for one another (I had Merle Haggard, he had Hank Williams Sr). I remember this moment as we walked where I was just filled with love for Paul. I called it the “shining beauty” moment because this love and light just came off of him.I knew I was in the presence of someone special.

I know that all the people in the Cf community that Paul touched, even those who never had the pleasure of looking into his eyes, felt that love and light on their ends of the computer screen. He touched us all so deeply.

Paul’s death has left a huge space in the CF community, but I know that we all take from him what he taught us with his kindness, his humor, and his knowledge. I feel Paul all around me and I will always hold him in my heart.

So whew. I did it. I went back and forth so much on what I wanted to say, but I knew Paul would want me to speak from the heart. I also mentally said a few words to him for making me have to get up in front of a hundred people I don’t know and do the “I have CF” spiel. I know he knew how hard that was!

They played the song “Regina” that I assume Paul wrote for Gina. I had not heard this before. I have not stopped listening to it since. Wow. Lots of tears for everyone at that moment.

After the service, one of Paul’s former students, Peter ,and his college friend Ted introduced themselves to me and we sort of became buddies. I followed Peter to Paul’s apartment where the after-thing was(what do you call the thing after a funeral?.

I thought I would “feel” Paul when I got into the apartment, but it was clear to me that the apartment had been cleaned out quite considerably. I knew there was no way Paul lived that sparsely! It just didn’t have his “presence.” His mom told us to feel free to take anything we wanted (mostly books) just, “not the ashes” she said (might have been tempting). I took a Flannery O’Connor book as well as a Thomas Merton one. The Merton had notes in it, and I wanted something with his writing in it.

As things started to relax, now that the hard part was over, people were less rigid, talked more. I joked with Paul’s brothers, met two of his former girlfriends, both of which I had heard of, talked to cousins and neighbors. I talked about CF to a lot of people. I think there was a bit of awkwardness, as what do you say to a CFer at a CFers funeral? I explained a lot about the “denial” thing, as so many people spoke about how they didn’t know Paul had CF for so long. CF denial was one of the first things Paul and I bonded about.

The most amazing moment was when Bill (think that was his name), one of the musicians Paul recorded with (think Strobe stuff) brought out his guitar, and we all sat and sang a few Beatles songs together. On my left was K, on my right, Paul’s dad, and then his brother, aunts and cousins across the way, and right then, that is when I felt Paul. That was the sending off I knew he would want. It was truly magical and I will be forever moved by it. I recorded a few seconds here, which I want to share. You can listen, be there - but no snarking at my off-key voice.

Paul’s’ brother added me back to his facebook (sorry for people who saw he was online, I think that was us, that must have been hard), which felt a little like cheating, but everyone who knew him wasn’t the least bit surprised that he had removed a few of us that he was close with. That was Paul.

I feel closer to him now than I did before, I think I fell in love all over when we all sang. I felt all I missed by having CF, by not being able to hang out with Paul at his house because of germs, by not meeting at the “right time.” Because I knew Paul and I talked about that “other life” we might have had. No, I wasn’t in love with him like that, but there is just no other way to explain it. The other life – that’s the one without CF, I guess.

Being there, seeing and talking to these people who I had heard of, who had heard of me, made it all real. It wasn’t just an online thing, this frienship was real and deep. I wish there were second chances, because I would do it differently if I could. I can’t, so I hold tight to the experience, to the honor of having known him, and being able to share with those he loved most in the celebration of his life.

I love you, Paul Justin. You never would tell me your middle name. But I know now.

would you know my name?

2009-12-10T06:48:00.000-08:00

Yesterday I had to run some errands. It was a bit arctic here and when I got out of my car, a blast of cold wind lifted my hair and burned my eyes, left me breathless. And I thought, "Ahh, there you are," then started crying as I walked into CVS.

The kindness of others never ceases to amaze me. I hope that I can reciprocate what people have given me in these last few days. I keep feeling gluttonous, taking all the sympathy and holding it close, as if I am the only one who lost someone.

The truth is, we're all hurting, and the losses keep on coming. Though I was the closest to Paul of all the people we have recently lost, I've ben touched by what each person's passing has meant - what it means to all of us.

There is something odd about being a "survivor." Especially a CF survivor, because the idea of survival is so transient. What does it even mean, in the face of this disease?

All these large life and death questions are swirling around in my head. I've asked a few people their thoughts and every time I am left feeling that that can't possibly be the answer. It all seems so simple.

When my sister died, I remember people talking about "heaven" and I thought they were crazy. There could not be such a place. What a childish idea. When Paul died, my first thought was, "I sure hope they were right."

I miss you. I can't wait to be in your space Saturday, to breathe you in....fill up these cystic lungs with your energy, breathe out all the love I have. All the love I have, Paul.

if you sing a song, sing a song for them

2009-12-07T17:40:00.000-08:00

I don't get over things easily. I get kind of consumed by them. Today I barely could pull myself away from the computer. I just wanted to talk to other people who were feeling like I am, who understood. I have alwasy been a journaler, I have always tended to journal to deal with pain, hurt, confusion or anger. All of these I am feeling now. So I am writing, and rereading, and listening.

I went back through my old journals and found a few others that were written for Paul that I thought I would share.

This is another verion of "Hank and Merle" but a bit more detailed:

I got to meet my internet friend last night. It was really wonderful. I met him through cf.com and we've been "friends" for about two years now, though only in the last year have we really become closer. We joke that we are the other gender version of one another - if that made sense. He is 42 and about 9 months post transplant, but has had a very rough go of it. He is in rejection right now and is on a vast array of immunosuppressant drugs and antibiotics, so, since i culture staph and PA (sorry for the non CFers on the list, just know they are common bugs for people with Cf to have in their lungs), and since he is not doing so hot, we opted to keep the requisite three feet of space between us suggested for Cfers due to cross contamination...so we didn't hug or even shake hands. None the less, it was amazing.

This was my first meeting of someone IRL with Cf where I felt I was relating to that person through and about this disease. It was fabulous. I wasn't embarrassed to cough, we talked enzymes and transplants and abuses we've put our bodies through in rebellion of this disease. I felt so connected.

There was no sexual tension at all, as can sometimes occur between members of the opposite sex, I felt like this was a pure friendship. We met at a coffee shop and then walked to try to find him something to eat since it wasn't the best idea to be in a car together (but sadly ended up at DQ as SB is not a late night town, especially on a Monday). As we walked back to his hotel I just had this moment of affection. I wanted to hug him so badly, and I would have thought germs-be-damned, but it wasn't my health we were protecting, so I resisted.

But we chatted in the parking lot and joked when I coughed. "That's OK, go ahead and have CF," he said.

To which I replied, "I have asthma," which is, of course, a Cf joke. And we talked about what excuse I would have made to an unknowing person had I coughed like that in front of them. But it was nealry midnight and I knew I had to go.

G wasn't overly amused with this whole idea in the first place, and I'd already been gone for three hours, so I knew I shouldn't stay. But I wanted to. It was such a unique moment of friendship, one that I have never had with another person because we were totally united with this disease. Besides the fact that we have a a lot in common anyway, the understaning of the disease made it so much deeper.

I don't think words can begin to explain.

This, it looks like, based on my "stat counter" might have been what Paul was (re)reading a few days before he died. While I am sad he was possibly revisitng any Pepe business, I am so glad that these words were fresh in his mind:

I've delayed writing a post for a few days because I am just not sure what I want to say. I've certainly allowed myself to get swept up into recent events, mainly in defense of my friend. and while I am utterly intrigued by the unfolding events - the HOW and WHY of the whole thing, the fascinating mental illness that most likely masterminded things, I am more concerned with love.

I find that people are so quick to judge. So quick to assume the worst - everyone loves a scandal. I am no different I suppose, as I dutifully maneuver through my daily blogroll, scoping out good sites and snooping into others' lives. Yet in doing this, in forming an internet identity and a life separate online form the one I live out here, outside of the box, I have created a life complete with friends, meaningful interactions, and even love.

We all know that love can't just be turned on and off. Haven't you ever seen"The Crying Game?" (spoiler here) - even when our protaganist finds out his love is in fact a man, he can't just stop loving her, by then it is much too late. Of course feelings can change and love can fade, but often not as we try to direct it to. It seems the harder people rally against the effects if love, the stronger it reacts.

So while I watch this great drama unfolding, puitting the piece together like a Scooby mystery, I keep thinking about love and how it affects those most directly involved, and because I keep reflecting on that feeling I can't help but feel extremely sad. Sad for a person who felt the need to create such a lie to find love and even sadder for my friend who loved so deeply that he put his own needs aside only to find out that the love has been misused and misdirected.

I hope my friend knows I send him much love in these hard days and that I have always believed in him, have seen his shining beauty, and in the words of one of my favorites, that I hope he shall "rise up singing."

I will have to revist my sadness ad nauseum, that is how I work things out....so if you loved Paul, share here with me. I move through my emotions slowly, thoroughly. I know the music will come back to me a little at a time, but for now I am trying to be still with my grief, keep vigil for my friend.

Wilhelm, are you listening now?

2009-12-06T08:58:00.000-08:00

I really thought Paul would be in my dreams last night. I wanted to say goodbye. I was so unprepared for how hard I would take this. I guess I just never really thought it would happen. He kept telling me the end was near, but I wasn't listening.

I keep opening my chat boxes, hoping that some missed offline messages will pop up, anything, something. I didn't realize how much I depended on him being there. We talked probably 5 out of 7 days for the last two plus years, especially in the last year or so. Paul was always there. We would laugh about our relationship "in the box."

I self medicated last night and went to bed feeling Ok with things. But this morning that heavy skillet is back in my chest, a slight ache. I'll forget for a minute what has happened, then I will remember, with that dropping heart feeling, that Paul is gone.

I haven't grieved for a person since my sister died in 2001, not truly grieved. I forgot what an emotional roller coaster grieving is...laughing, crying, feeling calm, feeling angry.

My family is being OK. My husband, very much aware of how much time Paul and I spent together online has been supportive and I appreciate him not down playing my grief. He doesn't understand CF too much, but this he seems to understand. My mother was a different story. I don't think she can understand how a mostly online frinedship can lead to these sorts of feelings. She doesn't understand why I want to go to his services in Chicago. I felt more alone than ever when she made a few of the comments she did after I asked if she'd help with the kids when I found out when the services would be. The first person I would have talked to about that would have been Paul.

His name pops in on my chatbox and I keep wanting to type in, "you there?" but of course, he isn't.

I know Paul left this world in his own terms, the way he wanted to go. I admire that. I admire how brave he was in death. I want to be as brave in life as I honor and remember my friend, but these little selfish parts of me keeping popping in...feeling sorry for myself, forgetting how many others are grieving along with me. Parts I know Paul would have told me to recognize and let go of.

I know I am no where finished in this process. I may never be, as I don't let people in and out of my heart easily. But the place Paul held in my heart is huge. It isn't empty. I know he is still there, I just have to learn to hold him differently now.

I will not forget you

2009-12-05T13:46:00.000-08:00

I know I am not the only one with a heavy heart today. Not the only one touched by a very special person, and probably not the only one turning to her online friends for solace and support.

I don't know how much I am ready to shift through my feelings yet, it is all too real and shocking for me. So instead, I wanted to repost an old blog, from early July 2008. Paul was driving back from Pitt and he stopped through and we spent a few hours hanging out. It was wonderful. I originally blogged this at cf.com, but I am so glad I thought to back it up so I can share it again now. Words are all I have left...but how appropritae for our Paul Q.

Hank AND Merle

It's too bad I forgot my camera, because for me, Monday night was worthy of recording. Why you ask? Well because I got to spend a few hours with my favorite CFer, Paul Q.

Although my uncle has CF, and I also had a little playmate when I was a child, I really haven't spent any time IRL with another CFer. For my uncle, it was always sort of the elephant in the room: no one taked about it much in our family. As for my playmate, well we were young and I think my mom tried to limit our interaction because she was sick and my mother didn't want that to scare me (and we wonder why denial?). My uncle is 11 years post tx and I think might feel he has left Cf behind, my playmate has since passed away. So besides late night chat with you all (each in our own separate box) and occasional glimpses of others at clinic, my CF interaction has been limited. No CF camp for this old dog.

Usually, meeting someone for the first time is a bit anxiety inducing, for me at least. and I prepared Paul Q for my possible muteness, as I can be rather shy sometimes. But it only took a few minutes for my shyness to melt away, partly, I realized, because I had nothing to hide. I wasn't worried at all about coughing - I mean, he knew why I would be coughing and though I didn't eat, I certainly didn't have worried about being stealth with the enzymes. I really have not ever felt so free with CF, not ever. Because although I cough a plenty around my family and don't hide enzyme taking, this was still unique and was....wonderful.

I have wrestled with how I feel about CF for the past year, as I have increased treatments and tried to come to an understanding of what it means for me, blogging much of it here, as a record for myself and an outlet where I know others can understand. I tried "coming out" in class last semester, but that wasn't quite the moment of release I thought it would be. I still cringed each time I said CF. And mainly, it's because people just don't get it. How can they? They try and they mean well. But I just don't feel they can truly know. Even my own husband, who valiantly set me off to meet a "man from the internet," but sat home worrying the entire time, couldn't understand what I was saying when I tried to explain why hanging out with Paul Q was different.

I think that meeting Q exemplified what coming to this site has meant to me. The importance of the connections with regards to having this disease, the frienships forged here. I am grateful to all of you for what you bring to the table as we flounder about trying to catch our breaths.

And thanks Paul, for taking the time to spend a few hours with this old country gal. Here is the hug that I didn't get to give ya (((((((((((((((((((((((((((((((((((((((((((((HUG))))))))))))))))))))))))))))))))))))

I know you rider gonna miss me when I'm gone

2009-11-23T12:53:00.000-08:00

So, this is the never ending story. Well, maybe not quite. Ever been to a Dead show? It is more like that. Only instead of Scarlet Fire>New Speedway Boogie>I Know You Rider (no, I doubt the Dead really played that set, but whatever) I get:

H1N1>oral levaquin+prednisone>IV levaqin+zosyn>major joint pain>sinus infection>oral cipro>more joint pain and sinus pain>acinetobacter>doxycycline.

Killer set list, dude.

My last cultures showed a possibility of acinetobacter, which, from my science homework, is not really great news. So I am now on doxycycline until my TOBI arrives (switched form colisitn) probably after Thanksgiving. ~le sigh

goodbye hurting-me-fluoroquinolone-cipro. hello laryngitis-TOBI.

More mundane and exciting news is that it is coming upon the Wednesday before Thanksgiving, which is quite honestly, my favorite holiday. Not Thanksgiving - the Wednesday before Thanksgiving. I hope the doxy doesn't screw up my groove for that night. I waxed my eyebrows and everything!

beautiful people, you share the same backdoor that I do

2009-11-19T08:36:00.001-08:00

I think my hormones are funky, because it sure does seem like I cry a lot these days.

But I was looking over my livejournal friends list and my FB friends list and I was realizing that the cystics are taking over.

Sometimes I am amazed at how far I have come in the last 5 years with this disease and I owe so much of it to all the CFers I have met over the years. I love you guys so much, I don't know if I often express how much the CF community means to me. Seems it is so easy to get wrapped up in my own business.

I laugh sometimes when I go to the CF website I frequent (CF2chat, yo) and here are all these beautiful people and we're talking about the color of our sputum and consistency of our crap, and it is lovely. I love it. Who else on earth can really understand this. Who else would even care?

I love that we are such a close and supportive community. I am so pleased to be part of it. I have never been the joining sort. I didn't really do clubs in high school (aside from the swim team, but that was kind of forced on me - all for the best of course), no sorority for me in college. I tend to hang back, be an observer. Even within the CF community, I think I hold back a bit, tend to wallflower myself sometimes. Yet I could not be happier or PROUDER to say I am a part of this group.

But along with this membership comes the heartache. I hurt for you when I read your blogs and know you're not doing well. So many of us are sick right now, so many are really, really sick. It's so damn unfair that the most wonderful people I have met have to be sick, hurting, unable to breathe. It pisses me off.

I have heard it said more than once, in more than one place, that cystics seem to be really attractive. God's funny joke, eh? Hey, here are these crappy lungs and messed up insides, but I will give you a great face to go with it. We're elfin, faeries. But I know the truth: this beauty is completely represenative of the person inside. Imperfect as the insides may be, I think your hearts and spirits are strong and sparkely and vibrant. Even better than the outsides.

So, my beautiful friends, I send my heart out to you all. I love you!

and I love the non-cystics who read this page as well. The fact that you come here and you care makes you every bit as beautiful to me. thank you.

take me to your leader

2009-11-16T12:34:00.000-08:00

So. So. Um....

Clinic was last Friday. They did not have my bone density results (of course) and I had a massive fail on getting lab work done before, so not the most productive visit. I did feel very cared about though, something I have complained about with them before. They were quite concerned that I am not back to my old self post miss piggy. My doc ran something by me about viral myopathy which my google-fu fails me in finding good answers to that. I did get my labwork (blood, includng all vitamin levels and cholesterol (have not had that checked in YEARS)) and sputum done friday. had my bone density sent to them again and my last xray results as well, so if anyting is amiss, hopefully we will find it.

I am down to 118. I was 136.9 in March, so this is good, though of course everyone freaks out that I have been losing weight for 6 months. I am TRYING to people, even CFers can get big and can be vain. Anyway, I am Ok with 118, though I would not be sad if another 5 lbs or so slipped off - though I gotta say, I was glad I had some to spare during the big INFLUENZA debacle.

My PFTs were at 71, which is actually down from 74 and is also a week post IVS, which tells ME that something is still off, that or, as I suspected, H1N1 ate part of my lungs when it visited.

Last night when I nebbed and vested I had my first post IV welcome back mucoid PA moment, and today I swear fo' gawd I can feel it. I am tired and achey and just off. boo.

But I thik my 'tude is fixed, mostly. I am not in quite such a hole as I was, so that is good. I just want to "fix" whatever is wrong. I guess that prolly won't happen, not unless little green guys kidnap me and take me to their planet...or wait...I think I just spit a few of those guys out earlier. yum.

take these broken wings

2009-11-11T16:41:00.000-08:00

My hives are much much better thanks to zantac. Who would have known an acid reflux med is also an antihistamine (it is an H2 blocker, as opposed to benadryl which is an H1 blocker, I have been edjumacated). So combined with the benadryl, I have been OK today. I still look lkinda red and funky but nothing is raised or itching too much today.

More importantly, I am posting about one of my LJ friends, Eva. Eva is 2 years post tx and is now in chronic rejection. I think she is down into the teens for her lung function. Tonight she is going into the hospital because she is having too much trouble breathing. I am praying for her tonight.

i think her Lj journal is public if you're not familair with her. She was also in the documentary "65_redroses" which will be seen on Canadian TV on November 16th.

I've been feeling really defeated by CF lately, physically and emotionally, personally and extrinsically. I just want to fix us all.

itchy and scratchy

2009-11-10T18:31:00.001-08:00

Hives, day 3

Yeah. I am not suppossed to complain. right? I am now taking zantac, which is an H2 blocker and benadryl which is an H1 blocker. So far, not stellar results.
No more penicillians for me. I can't imagine this getting better with consecutive tries. And from what I read, desensitation might not work with delayed allergic reactions....which means, perhaps, I am screwed. c'est la vie custique. (vie de merde, no?)

my hands are swollen like little red balloons, my neck looks like I have ringworm, and my face looks like that guy on "Something About Mary" you know which one I mean, right?

PLease go away, hives.

sitting here in limbo, like a bird without a song

2009-11-08T16:05:00.000-08:00

So, you know, when it rains, it pours.

I have hives, I assume from the zosyn - I also got hives from augmetnin and ceftazadime(dine?), so I assume this is a penicillian thing.

Also, I am low on creon, In fact my purse stash ran out and last night we were at a birthday party when I realized I didn't have any and there were none in my husband's truck. So I made the stupid decision to go ahead and eat a hamburger without. I hardly ever eat without enzymes. Today I remember why.

I have only 8 creaon left at home. So I called in a refill.

Upon pick-up, the pharamcy told me my creon rx was declined due to price by my insurance. They have declined it before, often saying I am getting "too many." Usually I and lightly bitch and they fix it. I always assumed it was because I was trying to refill before my 30 days wre up, as is sometimes the case.

Anyway, when I called, the gal on the phone said it had to go to administrative review and would take 24-48 business hours to be resolved.

Dear readers, I have never "cussed out" a person in my life. In fact, I am very kind to the poor fools who answer phones at these kind of places because I know they are just little inefficent cogs in what is usually a square wheel. But I just came unglued. I was in the car at the Walgreens parking lot scratching my hives, woth a stomach ache and now crying and I think I said something to the effect that I had to have my medcine immediately. I could not fucking wait 48 hours and that by doing so they were inadvertantly trying to kill me and could expect to have a huge lawsuit on their hands, etc. I am kind of embarrassecd now.

But the woman on the othe end was kind and she kept her cool and apologized (and so did I) and she explained that since my rx was over $1500 it required an adminstrative override. I have only been taking this many creon for about a year now and I guess on business days sometimes Walgreens handles this for me, which is why this denial was happening sometimes and not others. I ended up getting a 24 hour supply from Walgreens. Nice or not, that rx company can bite my hived up ass.

So world, while I did walk about a mile yesterday and today and the weather has been superb, my nerves are a bit on edge and my tears are flowing easily. There is no where to go but up.

it's easy

2009-11-03T06:23:00.000-08:00

My lungs are finally running pretty clear streams whilst vesting, sweet. I have a cold and my one ear feels like I might have gone deaf in it, but my mood is OK.

I think that I really need to be grateful for where I am - I am home, I am relatvely healthy. H1N1 is eating the CF community up, so I really need to appreciate where I am and what I have. I keep fearing that this illness will have been the turning point in my health, but I guess, if it is, it is. I can't be too picky when it could have been so much worse...people are vented and dying from this horrid thing, Cfers and nonmutated folk alike, and I made it out, not unscathed, but OK. I have to send out prayers to everyone who is battling this thing (hell, prayers for everyone all around).

The home nurse is coming today to do a dressing change on my PICC. She sounded like a twit on the phone, and you know how I feel about pedantic twit nurses. I know there are come Cfers out there who are nurses...I know there are good nurses. This might be an excellent nurse with bad phone manners. I think Cfers need to try to rule the world, honestly. Then, everywhere we go, people will "get it" and not be so effing annoying.

ah, but I must keep love in my heart.

Twice in the last week I have seen my husband extract locked-in keys from our cars. Small things like that are so sexy. He is back on my good side (for now) having been trying to care for me. Love. Love is all you need.

temptation eyes

2009-11-01T16:07:00.000-08:00

My husband allowed me to loll around in bed until 4 o'clock. Seriously. I read, dozed, watched "17 Again" (cried in that movie, why? Because being sick and laying in bed is nice, but a bit depressing). Today I was legitimately lazy.

I am still exahusted though, having been up at 3 and 4 for unrelated items and then at 5 and 6 for meds and again 7:30 to flush lines at 8:30 when all the kids got up...and no sleep 'til (Brooklyn) midnight again tonight. Friday can't come quick enough. I've eaten so much Halloween candy my gums and tongue are raw, but i had this epiphany today. Time to get off my ass and start getting active again. I've been sick for a month, but it is time to move on. I think my attitude will make a big difference in things, so....hopefully I sleep well tonight and can be bright eyed and bushy tailed for tomorrow.

even make-up isn't helping with the old hag look

sick eyes

baby, roll with the punches - even if the end is not in sight

2009-10-30T17:34:00.000-07:00

The good:

My husband got up and did my 5 am infusion for me. He says he will do it the rest of the time. This means I have to get up just once, at 6 to disconnect and infuse the second med and then can doze until my alarm at 7. What a difference not getting up made - I still woke up when he did it, but I didn't have to move an inch. It made me feel loved.

The bad:

I am still a little SOB and my energy level is pretty low and so I feel I am getting behind, especially with my school work. This is my last class before I write my master's thesis, so I really want to be done and have it go easily. I am feelinga bit stressed.

The ugly:

I seem to have caught a cold/virus on top of everything else. My throat is on fire, very very red. Pretty doubtful it is bacterial with the meds I am on sucking every inch of bacteria out of my system (just ask my colon), so it must be viral. Please body, fight back!

So, still on a teeter totter here, but I keep hopeful. There must be an end in sight? right? please!

I thought it was a bird but it was just a paper bag

2009-10-29T11:32:00.000-07:00

I want to try to be postive and uncomplaining as I write this post. But the thing is I am exhausted and I have some seriously upset bowels, and I can't sleep (med induced insomnia??) and I have been ignoring my kids and I am tired and I don't see how this is suppossed to make me get better, my throat hurts, I am coughing up a ton, look like a greasy spoon, and the little one has a fever (her turn with H1N1?) So....how to make lemonade out of that pile of rotten citrus fruit?

5 good things for today:

1) Only 7 more days to go
2) we've financially caught up from my husband's weel long non-paid H1N1 work vacation
3) some solicitor today told me that I didn't look old enough to be the home owner and the guy with the infusion pharmacy said I looked too little to weigh what i do (which I guess was a compliment)
4) special hot cocoa!
5) October is almost over, November can't be any worse, can it?

OK, number 5 was cheating, but serioulsy I am so ready to move on from this month - as if the changing of the month will change anything, but it is symbolic, yes?

Since I have been sick I have been pretty holed up inside and so I have spent far too much time on the internets. But today I was watching some of the vidoes at Cfvoice.com, and I was really struck by this shared experience we all have. Just listening to people's voices, watching them breathe...it just kind of hit me (as things do from time to time) how important my CF community has become to me...so for that, I add my 6th gratitude of the day....you all. Much love, all of you.

go back jack and do it again

2009-10-28T09:03:00.000-07:00

edited 10-28-09 - 9:22pm whilst awaiting infusion

I have the time to address some of the topics that came up from the hubsand post.

But first, I shall toot my own horn. This morning I: infused two meds, vested, nebulized, fed aand changed a baby, dressed a toddler in a fairy costume (and got her to brush her hair), went to the grocery store with both children, put awat groceries and started laundry. woot.

No one better call me lazy. I do think I feel better though. I am still a bit SOB, but my energy (minus my lack of sleep, which will hit soon, I'm sure) seems a bit higher. Maybe it is mental, maybe it is just the need to get things accomplished, maybe it is the abx...who knows.

On to matrimony:

I showed my husband all the comments yesterday(I think there are like 17 of them! so cool!) and asked him to read them. His gracious reply was, "I don't feel like getting on the computer right now." humph. Seriously though, your comments brought a few issues to light for me.

1)The lack of interest, whether it be from fear or ignorance or what have you, makes me feel unloved and unimportant. I can't seem to get him to get that, but I need to recognize it and I need him to recognize it too.

2) Compassion and understanding are not the same. I have long thought my husband lacked compassion. Chalk it up to his upbringing. That is not the same as not understainding. I can expect him to educate himself and to try to understand the dymanics of CF, but I can't expect him to truly be able to put himself on my shoes. Right now he is failing at both a bit, but we can work on the one, the other not so much.

3) My husband takes care of me in a physical sense. He got up at 5 to help with my first infusion, he changes the oil in my car, he does laundry if I ask, takes care of the house (outside and mr-fix-it stuff, mainly)....emotionally, he is not as strong. He doesn't know what to do when I cry, doesn't know how to handle when I try to explain my expectations for him emotionally, and honestly, has no idea how to handle the emotional (or physical) demands of CF.

4) My husband DOES think I complain a lot. But the thing is, he and I have different definitions of complaining. I think complaining is sending your soup back because it doesn't have enough cheese on it, or whining about weather and things you have no control over. I don't think complaining is saying, "I have so much to do tomorrow, I have to do a and b and c and by d and f for ghij and k." So that ne we might be at a standstill...

5) It is Ok to be tired and to take time for myself to do what I need to do with CF. With or without a husband, I will have CF, and for that my health has to be first. I want to be here for my kids and my husband and family, and I can only do that by taking care of me, even if I have to do it alone.

6) Another comment came in today while I was having my PICC fixed (see below) with reagrds to my husband's diabetes. I do take the time to inform myself on diabetes, to a point. I read a book about it when we first met and he started insulin (he is type 1 but was misdiagnosed as type II in the Navy). I share any new info I learn about it (though it usually comes from CFRDers, still, diabetes, diabetes), I make his lab appointments and doc appointments - so yeah, I am involved. I have not joined a diabetes support group or website or anything like we cystics have, but I know more about diabetes than I think he knows about CF. Part of this is just because we are not created the same. I was brought up reading and asking questions, he was not. I have to learn eveyrthing I can about a new thing, while he is content with just knowing what he needs to know or what "authorites" tell him. I don't think one way is necesarily better than the other and certainly I waited years to allow myself to learn details about CF, my own disease! but it is a different way of coping, and as with the aforementioned physical/emotional divide, this is another way we are soooo different.

BAH. I have to go back to infusion. something is wrong with this PICC. I can ~feel~ it in my body, if that sounds wierd, I know, but there is pressure in my chest and my heart keeps beating really hard. so much for easy.

PICC fixed. I hope.

tying off the dinosaur

2009-10-27T17:47:00.000-07:00

So, a PICC in my left arm, as handy as it would be, is a fail. 4 attempts before I folded:

Right arm a go, on the first try:

Post PICC calm:

Left arm, eight hours later:

Apparently I am very senstive to PICCs and have unfriendly veins. Super.

and, zosyn is every 4 (*see below) hours. lovely. Dare I say, besides my aching arms that I think I feel better today?

oops, I lied. After rereading a comment, I realized my typo. The zosyn is every 6 hours. not 4. Just a PICCed brain speaking, I guess

rock me amadeus

2009-10-27T05:29:00.000-07:00

Thanks for the replies to the below post, please, keep them coming, there have been some really terrific ideas brought to my attention that I had not thought of. I want to address this more soon. However, there are 2 minutes of vest time and then I am out the door to get PICCed - baH humbug. But it needs to be done. buh bye H1N1 residual bullshit, c-ya later.

I can't get no satisfaction

2009-10-25T19:11:00.000-07:00

Dearest readers,

Now is my turn for Q and A. As many of you know, I struggle with my husband understanding CF - and trying to get him involved. He won't go to websites, he doesn't read this blog. So I ask you now, please, post an answer to my question. I might copy and paste some of the answers into an email to my husband, so you don't have to write directly to me, but rather just pontificate on the subject :) (pontificate is a good word, no?)

So, what is the one main thing you would want or expect someone who loves you to know or understand about CF...what do you think or wish people would "get" about this disease. If you read and don't have Cf, maybe what is the one thing you wish you could know or understand about CF?

Honestly friends, I am at my wits end with feeling that I get no compassion around here, so your answers might be able to shed light in ways that I can't.

we pray and we pray and we pray every day

2009-10-23T20:34:00.000-07:00

well, the prednisone has hit. sometimes this stuff makes me kind of maniacal. I want to talk talk talk and eat eat eat. I keep thinking it is all in my head and that there is no way I could feel it so quickly, but I do. I have lost almost 20lbs since June and I think I just ate like 12 pieces of pizza, I'll probably gain it all back in the next week. boo to that. Anyway, my xray was "normal" so I am on the pred and hopefully that will solve my issues. I actually recorded myself breathing after I walked up the basement stairs today, but I can't get it to post, sounds like darth vadar.

Anyway, I said I would post my Q and A thing today. Only one persn had a pregunta, which made me feel a bit audacious to have even proposed such a thing, but anyway...my Q and A:

What percentage of each do you feel:

1. scared of the future, versus
2. grateful for what you have, versus
3. excited when you wake up in the mornings?

Is it 10%, 60%, 30%, or ......?

So, I tend to lay in bed at night and worry about the future - I worry about my kids (in general) I worry about not seeing them (as in early Cf death), I worry about my husband and my marriage - I worry a lot at night. Seeing this is mostly a nightly occurance, I'd day it probably equals about 5% of my weekly time.

I try to be grateful for what I have and give thanks just as much as I worry. I tend to say little prayers throughout the day, like, "please let my son have a good day and school" or "thank you for bringing my husband home safe," that kind of thing.
so again, I'd say maybe that equals, really, like another 5% of my time

I am rarely excited in the morning. I am not a real peppy positive kind of person, so unless I have something really special going on, excited is not how I start out my day. So that would be like 0.01% of the time.

When I stop to think about it, I guess most of my waking time is spent being busy, taking care of house and kids and school, so I thankfully don't have too much time to ruminate on my fears, but in the same token, not enough time is spent giving thanks for what I do have, either.

doctor docgtor gimme the news I got a bad case of lovin' you

2009-10-23T07:53:00.000-07:00

So I got into the Fort Wayne clinic, but not until December. They could get me in earlier, but their clinic is one Wednesdays, and I am babysitting for an infant Monday, Wed, and Thurs, so that kinda botches things up. I figured if I tell her mom now about December that gives her plenty of time to find someone else that day.

The coordinator told me they only currently follow 12 adults in the clinic. This is both good and bad as far as I am concerned. Good in that there is not an overwhelming amount of people clamoring to be seen, but bad in that they only have clinic once a month and the doc is a hostpital internist (or something like that) and so he is accessible, but not always because he if often on call at the hospital. We discussed that 90% of the time I know what I need and won't require being seen, besides routine visits, but just as well, if I am sick and NEED to be seen, will that happen? It sounds like yes, they make amends for that. I am not going to burn my bridges here in town, so I set my appointment for now as simply a second opinion.

Meanwhile, on the H1N1 front. I saw a new GP. I am really pissed with my clinic right now, though I know inevitabley I will need to see them. I just wanted someone to listen to my chest, check my sats, that kind of thing. The GP thought all sounded clear and my sats were 97, so while I don't know what my PFTS are (I suspect they have fallen considerably, to be honest, things sounded OK. I got a chest xray also. I suggested prednisone and the GP agreed, though she wanted to wait and see what the xray showed (which I'm sure will show what it always does, mild restriction, most damamge to upper lobes)...so I figure if the GP doesn't get the report today I can call the clinic and they will surely rx me the steroids. I feel inflammed, if one can feel such a thing.

But being SOB is a really new thing for me, I mean last night I had to stop at the library between flights of stairs to catch my breath and I sound like a freakin locomotive coming, huffing and puffing, so all is not well. I think IVS are inevitable - something I already knew, was even ready to do...but don't want to.

so c'est la vie cystique.

wouldn't it be a real drag if we were all the same

2009-10-19T09:10:00.001-07:00

I called today to the Fort Wayne Cf clinic and left a message. The coordinator for adult care was out, be back manana. I felt excited when the answering message said, "If you need to speak to Dr. J, call her at 2345678." This is exactly what I want: an accessible doctor. Something is wrong with my lungs. I am not congested, not anymore than usual CF, but I am short of breath and I am coughing a ton - I would almost venture to say bronchitis or maybe just serious inflammation. I know H1N1 is a respiratory flu, and my husband is still hacking away horribley (in fact, this morning and the other night both I was thinking in my head, "I wish he'd shut up" when he kept coughing - made me feel bad for him, living with me!) So maybe it is just taking forever to get over. I dunno. I am on levaquin, so I hope that is holding off any other major infection from setting in...but my point is, I should have been able to be seen by my doc, not told by the NP, "well, we can do an xray, but it won't make any difference how we treat you." Well, fine. I don't want an x-ray anyway, but this is not just a Cf exacerbation, this is repiratory influenza and maybe I need something different than usual Cf crap? I don't know, I AM NOT THE DOCTOR (but should have listened ot my dad and become one, sheesh), and i don't want to have to play doc to myself all the time; sometimes I want someone to care enough about me and my health to at least want me to come in and be seen. Unrealistic??

So some people are posting a little Q and A on their blogs, which I thought might be fun to do, as who doesn't like to wax poetic in their personal internet space? So I leave the Q and A open to questions, which I will answer. Ask me anything, not much is too personal for me to give some answer to. I will respond on Friday, Oct. 23rd to any inquiries (this reminds me of my dad, who loves to talk, telling my brother's friends, "Now is the time you can ask me anything you wan tto know about," and me thinking: please God, don't ask him anything, I am so tired of hearing him talk!)

I called the witch doctor he told me what to do

2009-10-15T05:31:00.000-07:00

I have to say that all this H1N1 buuullshit is making me quite nostalgic for my good health. I guess we all need that kick in the ass reminder every now and then not to take things like health for granted. I got a little paranoid this morning, morning 6 with a fever over 100, about not making it through the great flu epidemic of 2009. How long can a body have a fever before all the organs cook up? Alas, here I am vesting and nebbing and typing, sans advil or hydrocodone (how I love thee), and while my head feels slightly cracked by a ginsu knife and I have to turn my entire body to look right or left lest my eyeballs send searing pain into my dome, I am in decent spirits.

Onto Piper's blogger challenge.

1) What are your thoughts on "alternative" forms of medicine?

2) Have you personally ever tried any of techniques to manage your CF (or your child's) other than the typically prescribed routine? If so, what did you think of them? Are you still doing them?

3) What does "healing" mean to you in the context of cystic fibrosis.

4) Anything else you want to say on this topic.

1) I believe in alternative medicine to a point. There is a lot of wisdom in using nature to heal - I believe in a healthy diet, I believe (and have used) acupuncture, I believe in exercize, I believe in aromatherapy and essential oils (sorta, there is some proof that oils absorb into the skin and help, but I'm not using oils instead of meds anytime soon)- I don't believe in crystals or random chinese herb concoctions sold on the street corner or reiki. My dad was always a big proponent of diet and exercize and herbs - but not at the sake of modern medicine, in conjunction with. And while I know that diet and exercize aren't really "alternative" it is surprizing how many people don't look to those FIRST when trying to heal. I don't think we should blindly believe in any one mode of treatment. I think people should constantly question, search, try new things, but we don't need to reinvent the wheel either.

2) Exercize was alwasy my saving grace with Cf and I will spout off about it until the cows come home. My parents putting me in competitive swimming as a kid was the best thing they ever could have done for me. I did no other treatmetns as a kid, aside from enzymes. I don't exercize now like I should, partly due to my own laziness, partly due just trying to find the time. I have used herbs in conjunction with my Cf, but never saw any great improvement. Right now, I am all Western meds.

3) For me, healing with CF means not getting any sicker. It means rebounding from illness. Not feeling pain, not being uncomfortable, emotionally or physically, with the disease.

If you have your own blog, answer one or some or all of these questions there, and then post here to let everyone know to check it out. Or else just answer the questions in the comment field.

makin' bacon

2009-10-14T15:43:00.000-07:00

We have H1N1. Fo' shizzle. I have been soooo sick for 5 days now, serious misery. I went to medpoint Monday and their quick culture came back negative for both strains of flu. My husband went to his family doctor and had the same result. But today his doc called back and said yep, you grew out H1N1. Lovely. So I assume my culture is the same, though Medpoint has not called. My son already has been sick and done with this - he is the one who brought it home and so far, the baby has not had anything (knock on wood). I have not had the flu since I was 14, so this has knocked me on my patootie. I am living on advil. I am behind on my class work. bah humbug. Hurts my eyes to mve too much, I feel like I am telling people I have the bubonic plague.

love love me do, you know I love you

2009-09-30T19:18:00.000-07:00

I know, I know, I have been a blogger terrible. But we moved, and I have this killer class this semester, and I did an art show that had me crocheting until my fingerrs were raw, and I've just been busy.

So I finally get a breath tonight. I have a midterm paper due tomorrow that if I read it one more time I might puke, so I decided to play internet.
I have ben getting all my ducks aligned for my master's thesis which I will be starting to write in earnest in December. I have decided to use Cf as part of the dealio. I don't know why, some sort of masochistic impulse, I think. But I am doing a memoir, basically, and I mean, really, what kind of memoir does a CFer write that leaves out the Cf part (the kind I would have written five years ago, maybe). I am a little nervous and a little excited about it. I am excited to have a creative focus, I tend to lose sight of things without cemented goals, so this will keep me busy.

In health news, I had a bone density scan today and I vist an allergist next week and I think I am going to do a prophylactic round of IVs soon since I have met my deductible for the year. I really don't want to, but I can't hlep but think if it holds things off another year or two like it did the last time, then I am in good shape. We'll see. Ivs and this class might be more than I can handle.

My boy has been having a hard time in school this year and I am close to taking out a few 4th grade teachers. I have been in contact with the principal and I am working on getting him a 504 - so you know, they can stop taking away his 15 minutes of recess and making him write lines instead (who on earth thinks this is a good idea or even an adequate punishment - did these people study ANY of the same education sources I did? and has anyone even heard of Alfie Kohn???) SO that has taken up a lot of my mental capacity each day. Rue being a mom.

So anyway, hello CF friends, and whatever other random people read this blog - I know you're out there, I see you make return visits, but who are you??? Reveal yourselves.

I love you all!

she's like a rainbow

2009-08-20T11:02:00.001-07:00

We are in the midst of moving. boo. I don't mind unpaking - that is kinda fun, but packing and hauling heavy shit around - yuk.

I had clinic today. Mostly I just want to record what happened for my own records. So, according to them I have lost 11 lbs - yeah! according to me it is 14 - either way I am definitely down a pant size, in fact my pants have a big pooch in the belly of empty fabric - yea for success. I would still be OK if I lost 10 more lbs, but I won't complain if I can lost about 7 more.

My PFTS were down to 69 (74 at last visit, I think) and I was sooo congested and rattley I had not really noticed until I tried to do PFTS. So the gal (a different PT than usual) had me do an albuterol treatment, something I have never done at clinic (serioulsy) and I was back to 74. So I guess that is OK, but I sounded pretty bad and could barley make it to the end or take that last deep breath in.

I asked for a bone density test, cholesterol. and all my vitamin panels (my D has been low for like a year) - look at me being proactive.

I also requested to go on IVs at some point before the year is over since I have met my deductible and my insurance is paying all my bills now. I want a good clean out, especially since - though my labs two two weeks ago again showed susceptibility to cipro - we seem to be wavering on the availability of orals. So, I am guesing end of OCtober, early November we'll do them unless I get sick before that.

Anyway, that is about the gist of it. Nothing too exciting. I will take some house pics when we get settled - we're going from not quite 1000 sq feet to nealry 3000 so I am pretty excited, but busy busy busy!

and I try to draw the line but it ends up running down the middle of me most of the time

2009-08-07T13:14:00.000-07:00

Today is my 5th wedding anniversary. We are also signing on our new house today! So that makes today a good day. Now that I have said the good stuff, let the complaining begin.

I went and blew a spit wad at the lab and picked up my Rx - but I don't think I am going to take it until Sunday - I don't know, we have a motorcycle trip planned tomorrow, it is suppossed to be in the 90s and I have not forgotten last years abx California trip which resulted in a horrid sunburn rash, plus, I ain't drivin' so I want to drink my liver into oblivion before I go on the Lev...that being said, I feel awful. I actually feel today the way I used to feel everyday after work, back when PFTs were low and I wasn't doing treatments. I didn't realize how bad I used to feel. But I recognize this achey, tired, worn down, I-can't-breathe feeling. It actually amazes me that I used to feel this way a lot. I don't miss it and if anything, this little bout has reminded me why I need to be vigilant with my health (how soon we forget?).

I've written before about my husband. For all his positives, "getting" CF is not one of them. I would like to think that his dire love for me keeps him in denial of the reality of my disease, but this evil little voice sometimes wants me to believe maybe he really just doesn't care (cue the sad, pity music). The reality is I just don't think he has a clue with how to deal with me and CF and has not taken the time (or felt the need) to educate himself. But what makes this hard is that I would like a bit of compassion when I feel this way. I am so tired, I don't want to do anything. Last night yoga about killed me and then, laying in shivasana (relaxation) I just concentrated the whole tiem on NOT coughing, which is tiring in itself. But he doesn't get it. Yesterday I said, "I don't feel good" (which, I am told I say a lot) and he mumbled something about being a "complainer." On top of learning that my future in health care might be all needles all the time, I was just crushed.Argh. How 'bout a big green wad of FUCK YOU.

Before I go on, I want to add a slight addendum. I tend to be very real and frank about how things are. If they are good, I say they are good, if they are great, I am estatic, but i have no problem saying when something is fucked up. So complaining about this one part of my relationship with my husband, not hiding or pretending that things are any way but they way they are in relation to CF (or my health, or kids, or job, or whatever) is by no means a full picture about how things are - it is just this one part that needs reconstruction.

Anyway. I don't know what I am going to do. I want to feel good. I want to have fun tomorrow. I want to get into my new house. I want I want I want....

wakin' up to an alarm stickin' needles in your arm

2009-08-06T14:37:00.000-07:00

If today weren't the dogz shit, I dunno whut was.

I called the clinic for an abx. Even after treatments (vest, Hypsersal, colistin, advair and albuterol) I am a gnarly rattly mess. My chest hurts, I feel like I can't breathe and no matter what I cannot get stuff to come up. yum. So, my great idea was I would call the clinic, get come cipro and maybe some pred to hold me over until I go in on the 20th. Cipro always works well and I have not taken it in close to a year. Well LO AND FUCKING BEHOLD, according to my last sputum (May) I am resistant to cipro AND Levaquin. terfuckinrific. Actually my NP said the levaquin came back as intermediate or something - I have never seen that on a lab before, but whatever. So I am going on the lev until I go in on the 20th. Or until my new labs come back and say anything different (going to hack one up for that tomorrow). We are moving during the next few weeks, and I don't want a PICC for that, so we figured unless I get a lot worse, even if I end up needing IVs, hopefully the Lev and Colistin can hold that off until after I move.

This sucks ass. I mean, I knew it would happen, especially as I have totally overused those two abx in the last few years in order to avoid IVS, but what a bummer. Plus my chest hurts, as it did last time I got sick, so maybe a new Cf era is beginning - pain and needles.

I am going to yoga. Hope I can breathe in there.

pisser.

I'm a poet and don't know it but my feet show it, and theyr're Longfellows

2009-08-03T07:05:00.000-07:00

I am published!

In other news, I am sick. My chest hurts. HURTS. This is a Colistin month so I am hoping that will keep things at bay. We are closing on a new house this Friday (our anniversary, so I can tell everyone my husband bought me a house for my 5th anniversary. aw.) and I cannot be sick to move. I hate moving at it is, let alone hacking up chunks and thus peeing my pants everytime I try to move a box.

oh, and please take my poll ------->

made lots of money, how much I don't know

2009-07-31T12:34:00.001-07:00

My husband is a big Lynyrd Skynyrd fan. We've seen them twice, it's a good show. Anyway, over at cf2chat, Amy linked a youtube video of Rickey Medlocke on some show.

I was caught by how he talked about how not many people knew he had CF, and how he had a "low grade form." And I thought: Well, there I am in my rock star self, so for some odd reason I had the urge to contact Mr. Medlocke.

I found his agent info, I have no idea if it is legit, and I directed Rickey Medlocke to Cf2chat as well as here. Pretty ambitious of me, wouldn't you say (and maybe a bit cheesey)?

So, ~wave~ if you're reading this Rickey Medlocke, Welcome, Cyster to Fibro (sorry Piper, but I had to steal that!). Ha. :)

I leave you with my favortie Skynryd song:

Can't go wrong with the piano.

Om shanti shanti shanti Om

2009-07-24T07:14:00.000-07:00

The mailman delivered my mail to my neighbors' house. It was a letter from the local CF council. My neighbor returned it and said, "That's what you have, right?" I've lived here for 7 years and it is the first time that Cf has ever come up. When I was on IVs last year they called to ask what was going on, but I just said I had a bad infection. I didn't feel like going into details. I was sort of embarrassed by the mail thing. Partly because it just seemed like it was a secret, which seems dumb.

I went to yoga on Thursday, the first time I have been oback since 2006! I practiced Kripalu Yoga for five years religiously at a beautiful private studio. It was fabulous, so I am very yoga spoiled, but once I had baby #2 and stopped working it was just too hard and too expensive to keep going. I have been a yoga snob about going to yoga at the Y though, after having had such a great experience with my instructor at Tree of lIfe - despite the fact that yoga at the Y is free with your memebership. Anyway, finally my friend convinced me to go. Once I got over trying to compare the two in my mind and just gave into the practice, it was great. I am very sore. What I was capable of doing yogically 5 years ago is NOT what I can do now - though I tried a few times and gave my self a friggin charlie horse. Silly. I will go back though. I didn't realize how much I missed it.

I'm about to get sick. The guy on the elliptical next to me is constantly coughing up phlem! Its been 30 minutes and I can't take it much longer!

The above was posted by one of my friends as their status update on FB. Oy. She doesn't know I have CF, I don't think and probably the guy was a 100 year old smoker, but I still felt like posting back a snarky comment. I didn't.

you'll get anything with that evil smile

2009-07-14T20:19:00.000-07:00

When I signed in I felt like I had something important to say, but I don't.

I can feel the PA regrowth a lot this last week, as I get closer to my next round of Colistin (my third). Interesting yet sucky. Makes it so obvious I NEED the drug, I can't put it off.

I turned 32 yesterday. 32 is weird, Cf aside. I've never minded getting older, even when I wasn't paying too much attention to Cf. I think part of it was I always looked young, and I hated it. It seems funny to me now when I think about how upset that made me. I mean when I was 12 my dad would tell people I was 8 to get me into places for free and no one ever batted an eye. When I was 20 he tried the same move to get me into The Louvre for free. When I was like 14 it was hard to try to get older boys to like me (as every 14 year old girl desires) because I looked 10.

Though it is sad to report that the world of looking younger ended about age 29. Now I rarely get carded. Maybe I get mistaken for 29, but rarely that (what was interesting is I went salsa dancing a few weeks ago with my friend and this boy Salvador was flirting with me (so exciting for an old married gal!), he was about twenty three or four and for some reason he was guessing my age - I think I told him I was married and too old for him - anyway, he guessed it at 27 - which means you know he was trying to be nice without being ridiculous...so 27 seemed kind of old for him to guessing at out of kindness, if that makes sense. Ah, vanity.

I digress, I don't mind birthdays.

Mt step son had a baseball game today, league championship, and they won. Exciting.

My boy has his championship swim meet tomorrow. He is swiiming fly, back, breast, and free. He won't do great, but maybe there is hope he could place in the top 12. (I also thought he could win the triathalon and he was like 56 out of 86, so not near the top. I have moon eyes for the kids). We have to be there at the crack of dawn. bah.

The baby got her first haircut today. She looks so old. (in referene to the earlier portion of this post, she doesn't actually look old at all, she looks about 2.5, her age, she just looks less baby and more kid)

I get a new camera for my brithday - my other one broke after a spill on the ice at Christmas time, so pics soon to follow. Until then, I leave you with Mona.

the ants go marching one by one hurrah hurrah

2009-07-02T08:35:00.000-07:00

DISGUSTING! OMFG I AM GOING TO PUKE.

There is one thing I hate in this world, and I don't hate much, but I hate earwigs (technically more than one thing, but we'll think of all earwigs as one big earwig). I hate them. They give me the creeps so bad. I don't kill any bugs, I don't hate any bugs, but I HATE earwigs. I still don't kill them, cuz killing bugs grosses me out, but I get all fruity tooty screamy when I see them, like stand on a chair and point kinda freaked out.

So this morning I am nebbing. But my compressor keeps acting all wierd. I turned it off, then on, unhooked the tubing and reattached it and it would work fine for a few minutes then stop again. I got through my treatment and when I unhooked the tubing and took the neb cup off a fucking earwig fell out of the bottom of the tubing. OMG. I was inhaling earwig germs. I want to die. I have no idea how I did not see it in there. i can only guess there was some moisture in the end of the tubing and it crawled in. I feel like I am going to die from some unknown earwig disease. serioously. I want to be admitted immediately. gawd.

In other news, I have lost 7 pounds. The secret to my success? No more soda nd juice - that's been the biggest factor. So I guess if you want to gain, drink a coke in the morning, a few glasses of juice throughout the day and then like 5 rum and cokes before bed at night. Surefire way to pack on the pounds.

I met my old lover on the street last night

2009-06-11T06:51:00.000-07:00

I've been thinking about sex. Cystic sex, represent, yo.

Seriously though, how I have to arrange the pillows in a certain way, I can't have my head lower than my body or I will cough, and a coughing fit does not exactly set the mood. How I get more out of breath than he does, the fact that we had to have medical intervention to convieve our daughter because of my overly thick cervical mucous...all of these things that set me apart from other lovers he's had (other lovers? no! I am the ONLY one!), from the "regular" folks.

I recently friended an old lover of my own on facebook (don't tell my husband, as far as he knows, he is the only one. kidding). He never knew I had Cf. We didn't get that far. I do remember how he'd spend the night and in the mornings especially, when I have my usual coughing fit, I would lay very still in bed, breathing just so, trying to hold in the coughing fit until I could get to a bathroom and hack silently (as I often do, you know, that cough so hard it's like a car engine trying to start) into a towel. and I find that I want to post less Cf related stuff now that I know he sees my page. That makes me feel bad. Ashamed of being ashamed. and I am not ashamed. I just....well, I guess as far as that guy goes, I feel like he had this image in his mind of me and having Cf would somehow change that image....?

Sometimes I feel guilty about Cf, around other CFers. I wonder if it is unkind to talk about my kids or my flabby belly, things that flaunt my health. Part of me thinks, no. My life and situation is what it is, and I should be proud and grateful and not try to hide anything; part of me thinks sometimes I should know better when to shut up.

But then I am also reminded that no matter where I fit into the Cf community, I still belong there. I know that I'm not the only one who makes love propped up on pillows, who coughs in the middle of sex - and maybe not even the only one who once had a lover who never knew her hard abs and lithe thighs were related to a 50% FEV1 (oh, body of my twenties, where art thou?).

Even sex can't get past this disease, can it? All I know, is, however things progress for me, I know I'll still find a way to be kinky with 02 tubing.

so to all you kids all across the land, take it from me, parents just don't understand

2009-06-09T09:46:00.001-07:00

Last night while I was nebbing I thought I had some hemo. Turns out, it was just the old sinus cavity.

Some times it is still hard - as proactive and aware as I try to be - to grasp how Cf could affect me...will probably affect me in the future. I know I talk about this a lot, but I grapple with it often. Sort of this fear/denial thing. I gues it's true with anything - smokers who don't quit because they feel fine, people with high cholesterol who still eat brats and cheeseburgers all the time - gotta have a heart attack to "get it." But I don't want that to be me, so I try very hard to listen and learn from others who have progressed farther with this disease, but still, that little piece of me insists it "won't be me."

The other day my husband was talking about my son and he said, "when he is in his twenties and you're dead and gone..." and I was like SAY WHAT? I got really pissed off about it. I mean, my son will be ten this year, and I'd like to think I have a few good years left in me. It made me wonder though, I complain that my husband doesn't really understand or care to learn about Cf all that much, so what exactly he is thinking?! (too bad he can't good life insurance on me - ha!) (and, in his defense, his mom died when he was 21 and he said he was just thinking about his own situation when he spoke, which is probably true, but still, what a foot in the mouth!)

Finally. Parents. I decided to back out of discussions on the forum, but i wanted to talk about what I think about CF parents. I have two of them, you know. and they did for me the best they could.

As a kid though, i really did not want them involved in my CF care. In fact, at age 12 I stopped letting my mother come in with me on clinic appointments and by 16 she stopped coming with me at all. I know she did not know how to handle Cf, but I appreciate that she trusted in me to take care of myself. Despite some major deviations from that path (may my mother never know!), I think I've done OK.

Still. I think CF parents are a wonderful resource, a caring group of individuals, certainly our adovocates and biggest fundraisers....but, as with any other life experience, no matter how they love us, they CAN NOT KNOW LIFE WITH CF AS WE DO. This doesn't reduce their experience as paretns or their role in the CF culture, it only separates parents and patients. This is not a bad thing. I would rather be a CFer than a Cf parent any day, as I know the way I feel for my kids, and I would never want to see thenm suffer with a disease such as this.

Nevertheless, it irks me that my mom or someone else's mom or dad or sibling or whatever, would ever dare to insinuate that they can know life with this disease or even begin to feel my pain. My uncle stated it beautifully (he has Cf and is 13 years post TX) when he was in town over Thanksgiving and told my mother, "You don't hurt for her CF the way she does." So true. Yes, I feel pain when my children are hurt, but their experience is not my own. My mother feels guilty I have Cf, she feels sad my life might be shortened, she worries when I am sick...but Cf is mine and mine alone. I appreciate that she tries to understand that.

oooh, witchy woman, see how high she flies

2009-06-03T20:25:00.000-07:00

I need to confess.

My picture to your right is probably 6-8 years old, I"m not sure. I don't really look like that anymotr. Here is what happened:

Not to be mean to Sabrina, of course. Acoodring to God's word People magazine, she's lost her weight. Not I. But I do drink diet now. go me.

Many moons ago, I heard that I looked like both Sabrina the Teenaged witch or Buffy the Vampire Slayer.

So once, I was at a bar and this guy was like, "You know who you look like" all snapping his fingers at me. And I was like, "Uh, Buffy?" cuz I heard that all the time, and the guy was like. "Uh, yeah right" all disgusted and making me feel like an idiot. He is kind of a big wig in town now and whenever I see his face in the paper I still want to spit at him.

Soooo not related to CF.

sleep with one eye open

2009-05-20T18:37:00.000-07:00

1) We had to put our dog to sleep today. She had cancer. It was actually my husband's dog from before me, and to be honest, I didn't like her all that well - but it was still sad. RIP, Payton.

2) I know I am not the only person who sometimes HATES vesting and nebs - holla if you hear me!

3) Tomorrow is my boy's last day of school - which will make me the mother of a FOURTH GRADER. How did this happpen. Praise Jah, I am still here to see it.

4) It also means I am going to get to start sleeping in

5) Nasocort makes everything smell like vomit, but my ENT said my sinuses look great. Took long enough, shoooot.

6) It's depressing when these rejections come in from these journals.

7) Have you seen that commercial for Burger KIng that is all "I like square butts and I cannot lie?" HORRID SHIT ON THE TELLY

8) Exercize? What's that?

9) What is the sound of one hand clapping?

10) Do you own one of those P.O.W./M.I.A. shirts?

if I didn't have these veins poppin' out all over my legs

2009-05-14T19:00:00.000-07:00

Clinic today. Uneventful. PFTS hold steady at 72 (34 for 25/75). Weight is up. bah. And when I asked the dietician about losing, she laughed. Why can't people see that Cf or not, I am still a human with human worries and emotions. As of yet I still have a life that doesn't fully encompass CF or rather that is not fully encompassed by CF, so if I'm still a bit vain, I'll hold onto that because it means I am still winning. As smart as it may be to be glad I'm lugging around and extra 35lbs in case I get sick, I'm NOT glad and I don't like anticipating illness in this way: might as well hold onto it cuz I know I'm gonna need it. Yes, I'm sure this is true, at some point, but it isn't now and I want my goddman flat stomach back.

Anyway, besides that, nothing.

I've been lax, a lax blogger, lax blog reader. I'm sorry. I do love you all, especially the people who actually come here and read my drivel.

I've been writing poems lately to tell the truth. I probably won't post them, though one is being published in an online journal, so when it comes out, I'll link. It's keeping me busier and more fulfilled than writing about myself and dumb Cf right now, but I'll be back. It all cycles through.

everybody rolls with their fingers crossed

2009-05-08T20:21:00.001-07:00

I ate a hotdog, potato chips and a half a cookie today without enzymes. Lordamighty.

It was my kid's filed day, so all the paretns had a picnic with the kids. The babe and I rode our bike there which was my measly exercize for the day. I have been suhc a slacker in that department.

My son's first baseball game tomorrow and he is a pitcher! Make momma nervous. I get more worked up than he does, I'm sure, but that's my boy out there!

My Cf clinic is actually make a change (cue the drums). They are now having peds and adult clinics on two different days. This is great news. No crowded waiting room, no snotty kids. I go next Thursday. This has been the first quarter I have not been in between 3 month visitis in quite a while. Seems a lifetime ago that I only went once a year. I don't even remember that girl.

AND, by some unknown fluke of my wierd ass insurance, it ~looks~ lilke tehy might be covering my sinus surgery 100% Why? Dunno. What loophole this falls under, dunno that eihter, but praise Jah, I think it might be true.

I don't wanna be a player no more

2009-05-04T20:45:00.001-07:00

I've been a piss poor poster I'm afraid and I don't have much to say today either.

I'm finally feeling better. My last night of class is tomorrow so no more computer time dedicated to school work (so more time for what? los internetes?) and summer is coming (slowly).

So, I've been a bit MIA. I've been sewing and crocheting again - I go in spurts, I made a few dresses for the baby, a shirt for myself, sand I am crocheting flower brooches (sp) for the mothers on mother's day.

My digital camera broke during Christmas. I think it broke when, after an ice storm and a night of drinking, my husband and I took a spill on the ice - but i can't be sure, though no one admits to dropping it (unles I did it??)so I can't take pictures of any of my creations. Just as well.

Clinic next week. Hope all has maintained. I'm getting my second round of Colistin this week, so hopefully it will work as well as it seemed to in March and I'll see some results on PFTs. Holding steady would be fine with me though - no, to hell with that, after all the pain I went through with sinus surgery, I'd like to see an increase, thankyouverymuch.

If you've read this entire post without yawning, blow yourslef a kiss!

I am a vampire I am a vampire I have lost my fangs

2009-04-13T15:54:00.001-07:00

This post probably won't go anywhere as I don't have a whole lot of interest to actually say.

My sinus are (sort of) getting better, but what I think it boils down to is that I need an antibiotic. My doc hasn't agreed with me yet, but I am working on him. I could bypass him and get one from my stepmom instead, but I like him so I want to work with him and not alienate his judgement. But, I go back thursday and I'm pretty sure I am gonna at leasttalk him into some cipro. The pain is just a plain old sinus headache now though, not the horrid pain I was feeling before, so I guess that's good.

I'm embarrassed to say I've been busy reading lately and not hanging out online so much. Reading you say, why, what a great past time (pass time?)! but the thing is, I have been reading the Twilight series (ducks head in embarrassment). I think what I need in my life is simply a teenaged vampire to spice things right up. Sigh. Maybe I just need to be 17 again, first love...

nah.

I have not swam in over a month now. I think I will go back to it tomorrow, but my motivation is nil. I ran a mile (don't be fooled, I ran/walked) last week, but that was my first exercize foray since surgery. I HAVE to get back into the swing of things, I was doing so well with my regime. I didn't lose a pound, but I felt good. I've been trying to count calories and stuff to drop a few (my grandma even commented on me gaining weight. bah), but being a CFer I have NEVER watched what I ate and so it is really hard to be disciplined about NOT eating. I even bought some hoodia. (that's embarrassing to admit too!)

I'm ready for summer.

ogres have layers

2009-04-03T06:30:00.000-07:00

ENT again yesterday. He said he has never had a patient have so much pain. So glad I get to be the one. But he said the left sife of my head looks great, nice and clear - but the right side...well, he could not even see in there until he pulled out a HUGE mucous plug and then he sucked a whole bunch more icky hard green crap put. He really thinks my pain is related simply to congested sinuses and his theory ia that I have a thin crusty layer of mucous over the tissue that is keeping it from healing properly from the surgery and that continued suction and washing should help. I'm not that optimistic though and I pushed that I can call Monday if I have no improvement and get another scan. That being said, I tentatively want to say I actually do feel a little better today. KNOCK ON WOOD PUHLEAZ.

I am sooooo effing tired of this.

I've decided to change my attitude though. I need to really believe there is an end to this as my whole mental framework has been poor lately. While I fully understand how chronic pain can suck you down, I also think I have been able to watch myself in a sort of removed way and I can see how my own attitude has been part of the problem as well, so I am really trying to stay happy and not let this get me down.

I also need to wean off the narcotics. I don't think they have helped the situation either. I mean, they help the pain, but not my lethargy and bad attitude.

So. off to do something fun and enlightning today.

Fare thee well, ogre.

(sorry, we're watching Shrek for the 10000th time)

Brain Stew

2009-03-27T05:33:00.000-07:00

I had the spacer/implants and splint removed from my nose yesterday. I thought the splint was removed last week, but it was actually the gel packs that were removed. The splint removal was a bit uncomfortable, but tolerable. There was a definite sense of relief when it was gone. I had had one of the stitches holding it place come out and so some of it was pushed far up into the left side of my nose making me sneeze A TON and so I was so glad to get that out.

BUT THE IMPLANT THING WAS LIKE HAVING MY BRAIN SUCKED OUT OF MY NOSE.

I mean, he was digging around in the left side (the right side is the one that has been giving me all this pain) and then from behind my left eye comes this searing tour-de-force of pressure nad ripping pain. I actually moaned.

I'm not a wimp, people. I have had a 100% natural child brith, I have 10 (depending on how you count them) tattoos, I pierced my own ear when I was in 6th grade for goodness sake, I can take pain.

BUT THE RIGHT SIDE.

OMFG. He could not get to the implant, so he is poking and prodding and renumbing it over and over and he keeps ripping out stuff that feels awfully similar to the left side extraction, but it isn't, it is just hard crusty bloody boogary stuff. So he would take a break, renumb and try again. Suddenly, I felt this ripping pain and pressure akin to my eyeball being ripped from the inside out my a gigantic crab claw and my brains follwoing being squeezed through my eye hole. I screamed, literally, screamed aloud and then all this blood just started gushing out of my head. It was like a bullet hole or something and my guts were pouring out of my head, all over my clothes and the nurse was like "OMG, Dr. K, she's bleeding!" and they pushed me back in the chair and covered my nose with gauze and I thought I might puke or faint. I have NEVER been light headed with blood or pain, but I am telling you all, that I thought I was going to pass out, so the doc gave me a SMELLING SALT. that felt great having a little whiff of ammonia in my newly gouged nose.

Anyway. I survived the ordeal but I will NEVER. NEVER. do this again. N E V E R!

My head does feel better though ym right eye is still agitated. I am thinking positive that there is an end in sight to all this. please.

this is the balloon catheter they use. The implants are about the same size, maybe a little thinner with these like grappling hook things attached to it. If you're real ambitions I think they are called micro something spacers

Never ending sto-orey

2009-03-20T08:08:00.000-07:00

I went to the eye doc today because my eye has been jacked since my surgery - and my friends cat last night (I am allergic to cats) made an already bad situation worse...and I have allergic conjunctivitis. Yippee for me. So I got gels and drops and all kinds of good stuff for my eye. But he says I should be right as rain in that department sometime in the next 48 hours. PLease oh please oh please.

I knew when I got this surgery that it would just be a snowball effect of issues, and so far, I think it is.

I am trying to get by on advil for most of today. So far so good, it just feels like someone smashed my nose with a brick, but it's OK.

I want to add, I don't REALLY look like Barbara Streisand now. I think I look the same, though I can tell a slight difference in my nose, I don't know if anyone else would. I will have to post some beore and after pics to see if anyone can really tell. I just thought it was kind of funny if you came out of surgery with a schnaz when you went in with a rather straight and uneventful nose.and now, because I must cease and assist (what do they say? Cease and desist?) all complaining, I bring you, a HAPPY MOMENT (drum roll, please)..............................

good grief. I can't think of a single happy thing to say. I am going to go stick my head in the oven now.

used to know a girl, had two pierced nipples and a black tattoo

2009-03-18T07:11:00.000-07:00

* My splint is out. Lisa, you must be one tough bird, because removing the splint hurt like hell. Even with a numbed nose. Ugh. The worst was when he used some sucker machine to get all the gunk out, felt like my brain was getting abortioned.

* But that ain't all, folks. I have to go back in a week to get these steroid implants in my ethmoid (I think) sinuses removed AND some sort of plastic wrap is on my septum and that comes out too. He says it won't hurt as much as the splint. But I dunno. They nicely forgot to mention that septum replacement is one painful mother fucker.

* I can blow my nose now!

* which means I get great joy at blowing out lumpy green bloody clumps of junk. I keep wanting to show people, like i am just so proud of myself that chunks are coming out now!

* on top of all this, my baby had some kind of diaresha (that's what we call it because in 5th grade there was a girl in my class named Dialesha and so ever since I told my nine year old that, diarreah has become diaresha) puke virus. I was so worried I would get it and have to puke before that spint came out and the puke would get all caught back there in my nose.... I didn't. There is a God.

* this is a pretty gross post

* Honestly, people, I think pain medicine is the only thing keeping me happy. Hello Betty Ford.

* My goal is to be "happy" again by March 27 (the day after the steroid plastic extraction). Will I make it????

my nose is built like a wound that won't heal

2009-03-15T11:47:00.000-07:00

I thought I wouild try to document the whole sinus surgery deal, but each time I look down at my keyboard my nose starts bleeding, so....we'll see how far I get. Plus, something is wrong with one of my eyes - I have no idea what, but it feels like it got scratched or burned in the whole ordeal.

OK. So I went in Friday about 11:30 - found out I gained 2 more pounds - thanks so much body, even after giving up fast food for Lent (such a Judas, this body). My sats were 97 and my heart beat was alittle high for me, like 113 over 64 or something (I am usually pretty low, like 98 over 52 - maybe that is an exaggeration, but I have a low heartbeat).

So I farted around for like 3 hours while they all did their thing. Finally at like 2 they took me back. Guess what?! Operating rooms look just like they do on TV! Go figure. They got me warm blanket, my doc gave me a little grandfatherly pep talk nd the next thing I knew people were annoying the fuck out of me asking me to sit up and take big breaths and yadda yadda.

I don't think I could open my eyes for like an hour after the surgery. They gave me dilauidid and fentanyl and I tell you, neither worked. It was the same as when I had demerol during my son's birth - I could feel the drugs but also still the pain. Anyway, somewhere in there my sats went down to 88 and my heart beat went up to like 130 or somerthing and my face turned all red so they were all kinda freaking out. But they would not give me even an ice chip and I kept trying to tell them in my morphine haze that I would be able to breathe so much easier if my swollen dehydrated tongue wasn't constricting my airway, but no one was listening.

So the sugery was only supposed to take 1.5 - 2 hours but took 3 because, as my doc told my husband, there was A TON OF SHIT IN THERE. Oy. and then the whole red face heart beat sats thing took an extra while as well.

I think my face got red because they heat you up in some bag. I get very red in the face when I get hot, like after I work out I always look like a red faced mess, but they kept saying it was from the dilaudid. Well, here is a secret, people - I have taken dilaudid before (nonprofessionally) and it did not turn my face red. But I wasn't sharing that info.

So now I have a splint holding my new spetum in place and that is causing me some pain, but overlall I don't think my sinuses feel soo shabby. There is some throbbing and bleeding, which is annoying, but I am tolerating (with the help of my friendly vicodoin rx and some advil (the magic pill, apparently) and some ativan when i start to freak out and want to pick the fucking bloody splint out of my nose).

I hope the splint removal does not hurt.

So my sinuses have been sinuplstied and all the other ones have been ectomied (why ever they call them ectomies, I am not sure) so I hope this fixes up some problems. Please.