Thursday, July 31, 2008

profanity within.

I have trouble choosing sides. I always want to be fair and diplomatic and empathetic. I am the queen of fence riders. I always see both sides. Lately I think that is just a way of copping out of makinf=g decisions. My husband has always said I am too wshy washy, I don't take any risks, I don't define myself enough. I don't disagree, I just never really knew how to take stand. This isn't to say I can't speak up for myself - verbalizing hasn't been my problem, just choosing sides within an issue.

So, I am trying not to care about this whole business. In fact, until last night it was just kind of a pssing thing - a minor annoyance. I didn't care that some people were going between the two sites. I still understand the dilemma - as i said, I was riding the fence for a minute as well, I had friends there, yet unbanned; I had three years of blogging stored on the site. But then my blog got deleted, without warnng, for what I would say was rather benign content, expecially in comparrison to some of the other recent things I'd written. I decided I would still read posts on the site but not post.

I meailed the "owner" of the site to ask why the deletion, but got no reply. NONE.

When another - very informative blog - was deleted, I was going to try to post a snarky thread about it, but discovered I was "unauthorized" to be in the forums.

But the icing on the cake was last night in chat. Another member - a fence rider - said that she was pmed by the "owner" of the site who told her to delete a recent blog or her entire blog would be deleted. What was this - a warning?! and then the two continues to have a conversation about the need for a highly positive atmosphere on the boards. WTF. For whatever reason, this infuriates me.

I want to let it go, I need to. I logged out from the site last night and i won't be logging back in. I am disgusted at the treatment that the Cfers have gotten formt a site designed for them. I admit, I am a bit slow on the uptake here, as many others have already run through this emotional gamut. I just didn't feel so discrimintaed against until last night.

But I can't support the fence riders any longer. I think we have to chose sides. By choosing ot stay at, the fence riders support this treatment and discrimination. I didn't understand that at first. I do now. Not to mention that one of our favorite cf. com Republicans is assurred that we will return. I am not returning. I hope that others will begin to understand that this is an issue that required taking sides. If the "other side" is chosen I won't pass judgement, I will just be clear where one stands. But fence riders choose sides by not choosing at all, and that is a choice I can't tolerate.

I don't think the "owner" of said siter would bother herself reading a lone cystics blog, unless it's to gather evidenace for her defacement suit, but just in case she does, I have only one thing to say: FUCK YOU.

Tuesday, July 29, 2008

I'm so tired, I haven't slept a wink

The lady from the CF chapter called back, I think, because she didn't leave a message. Pretty annoying and unprofessional if you ask me - but then again, my voicemail is Cookie MOnster, so maybe she wasn't sure if she had the right number. I guess I have to call again.

I got some lab work back today (800 years later). Looks like I will probably be going on abx again. No big surprize.

I felt crappy all day - sleepy and lethargic. It sucks because I have never used Cf as an excuse or a reason to do or to do anything - all the while I thought it was because I was so "tough," not gonna let my diease get me down, etc., though really it was just a form of denial. Now when I am tired and worn out, I feel like I CAN'T say it is Cf related because I feel no one would believe me. I guess it is a case of the boy who cried wolf....though in reverse, maybe?

Monday, July 28, 2008

we're not gonna take it, no we ain't gonna take it

Banned! I thought my blog was just deleted from the site (, like ya'll don't know) but i am actually banned. I am "Unauthorized." WTF. What a bunch of twits running the show over there. Oh wait, is that libelous (sp)? oops. Oh well, I've got better things to do than worry about that, like get my oil changed.

way across town a phone rings all through all

I did it. I called the local Cf chapter today. No one answered, so I rambled on the machine for a bit, realizing as I did that I really have no plan. But I did check out the CFF guidelines for starting an adviosry group (thanks Betsy) and with my germy, disorganized clinic, I think this is what I'd like to start with: simply an email chain where epople can share ideas, etc, escpcially in making our clinic better...and we can see what develops from there. This, I can do. Email and I are like two peas in a pod. I am not a good fundraiser and don't always have time to give manpower hours with the little ones, so I think I could actually do something like this. We'll see what they say. Wel, what can they say? No, you can't? ha. I mean come on. I just need access to email addresses I guess, so hopefully people will help somehow in getting the word out.

Also, I joined facebook, which is funny. I admit I do have a voyeurisitc myspace page under a completely false name and meail so that I can spy on people, but the facebook is real. I have been so anti these networking sites....but it is becoming an addiction, looking up folks. I just wish I could see their pages wihtout needing to friend them, because the 7th grade boyfriend doen't need to be on my friends list, now does he? But the best part is, so many of my CF friends have found me. It is so exciting to see a new person has added me to their list. And it is funny that I spent so many years trying to disassosciate with the CF world to find that the very people I didn't want to know have come to be the ones I enjoy and who have accpeted me the most. How things change. Thank you, O valiant Cfers (and people who love Cfers), I love you all!

Saturday, July 26, 2008

even one big union can't help us now

Today was my husband's union picnic. Before I married a pipefitter, the concept of union meant nothing to me. I wasn't in the teachers' union (quickly ammended by the huz) and really didn't understand all that goes into that kind of organizing. I don't pretned to have a grasp on it now, but I do know that the PLumbers and Pipefitters union is very strong here. It makes me think about organziing in general. I am not a very organized person - I always get things done, and on time, but I am not sure i make best use of my time - me likes to procrastrinate...I digress.

Union organizing made me think today about rights for the disabled. There is nothing my husband likes less about his job that having college educated businessmen come into into his job site trying to tell him - and the other men - how to run work. It is the same thing i have been talking about lately: Cf care and coordiantion run by Cfers. But here is where my digression comes into play: for a week now, one of the things on my to do list is to contact the local Cf chapter - but i have not done it yet. I keep thinking about doing it, but as of late my telepathy skills have been low. I guess it is a good thing that women's suffrage wasn't counting on me to get it started....though, in my own defense, I would have participated, I just might not have organized the thing.

I need to do something though, while the idea is fresh in my mind, as if I allow it to burnout it will go the way of so many things that I had the best of intentions to get done, but just never did.

Friday, July 25, 2008

Reading Rainbow

I've got readers, already! How excting. And a good thing, as I woke up this morning to find my blog at has been deleted. I've asked Jeanne, the "owner" to delete all the content I have shared there as well - no fair people get to benefit from my minute amount of Cf knowledge when my own thoughts are unwelcome. We'll see. This blog isn't about that place though.

Because I knew it was a possibility given the lately gestapo-esque moderating of that joint, I did take the time to back up some of my favorite snippets. I will post these here now.

old blog 8

I workshopped my CF piece a few weeks ago. It wasn't as bad as I thought it would be. I definitely felt this wierd vibe when I walked into the classroom - like pity-ish, which you know I just hated. But good graduate students they are, and immediately put on their scholarly caps and began to dissect the writing - pleasantly though. One of the biggest suggestions I had was that they wanted to know more about all of YOU - my "disease culture" - so,, you made it, in a composite way, to the final draft.

The worst part of the whole CF writing escapade, was that part of our revision/portfolio requirement was a graduate reading where many of the writerly folks from school were invited to hear us recite a few pages from our work. I decided to read from the Cf paper because a) I just revised it and b) if you're coming out, you might as well come all the way.

So, it was pretty horrible. To stand in front of a room of people and say - in a microphone - I HAVE CF - well, for me, that sucked ass. But I did it, oh world, here I am.

After the reading we went out for a few coctails (my favorite part) - but everyone got all worried that there wouldn't be seating in the nonsmoking section, of which I would have never complained and dutifully breathed in my month's worth of second hand - but I hated that it was because of ME that this was an inssue - and while I know everyone was simply being kind, I hate unwanted CF-related attention. It was a moot point - there were plenty of seats in the non smoking area and all was well. I downed a few pints and got all motor-mouthed about Cf with a gal who used to be an RT and the night carried on.

old blog 7

I am the type of person who enjoys being alone. It always amazes me that a great number of
people do not like to be alone - will go to great lengths not to be alone. If I can't get some tme by myself I'd lose my mind. These days that just means little things like maybe a trip to the grocery store or maybe a fifteen minute drive with some good tunes....just a few stolen moments of Shannon time.

Recently my husband's friend had to have emergency abdominal surgery. He spent abut a week int he hospital recovering. He called us the day after his surgery to tell us he was in the hospital and give us the room number. My husband went up to visit him a few times, spending a few hours there on a Friday night playing cards and chit chatting. I think if I were in the hospital (child bearing aside - though even then I needed some space) that last thing I would do would be to call everyone and their brother to tell them about it and have them visit me. Mind you, I am not being judgemental, this instance just reminded me of how deeply private I am and how much I prefer to NOT share any of my medical needs with others.

Of course, this comes from a woman who is a horrid patient. Part of the reason I think i would detest having people visit me in the hospital is that a hospital is a place with rules and routines and procedures to follow. I hate that. If I don't want my temperature taken at that moment (knowing I don't have a fever - don't you know when you have a fever? I do) or to have the instructions for my clean catch urine specimen described in front of my visitors I haven't got much say about it in the hospital. While I 've often found doctors to be quite reasonable folks, I often find nurses to be pedantic and dogmatic about following the procedures (and dispensing vague and uneducated advice). (DISCLAIMER _ I KNOW THERE ARE GREAT NURSES OUT THERE _ I'VE HAD SOME_BUT OVERALL THIS IS MY EXPERIENCE).

I guess it all stems from CF. My CF is something I hold very close and personal. Yeah, I am getting better at absorbing it into my overall being: I am wiritng a piece for my class about Cf, which means a big coming out to the fifteen students in that group of writers; I might even walk Great Strides this year - something I have never done before...I mean, with a T-shirt and everything (oy). But it is still my disease and mine alone. I don't like to share it. I share it here with you all because you understand - but out here in la la land (or wait - is the internet la la land. I get so confused! lol) Cf belongs to only me and I don't want others nosing around in it.

The last time my mom visited I was vesting and I hurridly unhooked and answered the door as if I'd just been busy scrambling eggs or something.

I don't know that any of this is logical, but it's who I am. I am quiet and shy and private and a bit of a loner and whether Cf is part of the reason I turned out that way or if because I am that way I treat my CF the way I do doesn't matter. What matters is that my wrestling match with this foe is not a WWF matter - just a coupla kids wrestling over the last donut, fiercly but quietly, so mom and dad don't hear

old blog 6

When I get something new I take really great care of it. Say I get a new black dress. I hang it up immediately, iron it carefully before I wear it, make sure my napkin covers my lap when I eat and that I don't snag it on anything. But after I've worn it three or four times and someone puts a cigarette burn in it or I spill spaghetti sauce down my front, I tend to get more lax. I may dry clean it a few times, try to keep it in its oroginal form, but once it gets a rip or snag or stain, I start to get lazy in its care. I wad it and leave it on the floor, wipe my hands on it when I cook, or start wearing it for Sunday errands instead of Saturday nights.

Since my IV stint, my lungs have felt great. I actually laughed without coughing. I could not remember laughter without coughing until that moment.

I am trying to treat my recently cleaned lungs like a new black dress. I am increasing my vest time and using the HTS twice a day instead of once. I am ready to start exercising. I've begun suaing my advair again as well. My husband and I went out to hear music on Friday for his birthday but we left the bar because of the smoke, something I never really worried about before.

But already I am coughing up crap. I like to believe that I've just opened up some airways that haven't had a chance to breathe, so smothered in green were they, that they are finally expunging themselves. But in reality, I know that PA is a greedy ***** and is simply restaking its claim.

So, I am trying to remain vigilant. To not go the way of the black dress, caring less and less the more worn and used something gets. This is my body after all, irreplacable and such. But i feel so frustrated. I am trying to get it together and I'm meeting resistance from within: this time it is physical, not mental.

I am trying not to beat myself up for not coming to this place sooner, so that I might have headed off that PA five years ago when I first cultured it; i was five years younger, my lungs were five years in better shape. I fear a quick decline.

I haven't worried about my health declining, ever. I feel I think about it too much now, but i have to be realisitic. My body, like a black dress, will wear and tear and streatch and sag, but it is up to me to slow that process down - a process that we know is happening inside our bodies faster than in everyone elses.

My dad always warned me that one day I would wonder when it was he got so smart. We don't see eye to eye on a lot of stuff, Dad and me, but I will say that all those lectures I rolled my eyes through about caring for my health are knocking around in my head right now like a coupla cage fighters growling, "You should have listened, dumbass."

I'm so tired. So, so, very tired. I am waitng until 3 to do my fortaz and then I am taking a nap. This schedule has me all f##ed up: by the time I am done with meds, it's midnight and then I am up at 7 to start over. bah. Plus, don't forget little miss boobakins in there waking me a few times. I am the walking dead.

Speaking of. I really thought i was all settled on this IV thing - it didn't seem like a big deal to me. I mean, I have had moments with it: I still don't like it, I still don't want people to see my PICC, but overall, I understand why I am doing it. I eased a lot of the impact to my family by explaining that IVs are safer for breastfeeding, which is true, but they are also better killers of my bugs (PA and Staph), and inevitably, I must try to harm the intruders.

But overall, I just didn't feel like this was a huge deal. Maybe it's from coming to this site where at all times plenty of people are on IVS, so I've gained a sense of normalcy about the whole thing. But I realize that to everyone else this seems like a huge deal. And that's where I have trouble. Everyone is being so nice to me. I appreciate it, I really do, and I know I sound like a complete ingrate, but I almost don't want them to be nice as it feels a little akin to pity. And pity, for me, only fuels the denial fires.

I guess I have come to accept CF from the eyes of a CFer and in comparison to other Cfers. But to the outside world, seeing me attached to an IV pole is still a bit unsettling, despite my explanations of PFTs and susceptibilites. It seems when you undersnatd the science behind it instead of just the voodoo of western medicine (that's supposed to be an oxymoron, but it ain't) it makes perfect sense. But I just don't think anyone in my life is getting over the PICC and the pole. It's making this really hard. It's the reason my friend stopped by to bring me a movie and before i answered the door I ran and covered my site with a sock. It's the reason I haven't been answering the phone when people call. I'm avoiding their reactions.

My mind is 80% settled - why can't everyone else get on board?

old blog 5

I did it. I requested IV meds today at el clinica. Probably get the ball rolling on Monday. Oy.

Weight is up a pound - that's no big deal - weight isn't an issue, though it's good to see I'm stable now at a decent weight with the breastfeeding, because if I'd continue to lose, that'd be bad.

PFTs are up from last time, but down overall - though we went back and it was like this: today 1.6, last time 1.4, 1.7, 1.8, 1.9, 1.8, 1.7 , 1.6 - so I am clearly up and down over time, but whatever, we want those bee-acthes up to stay.

Also, the PA has been around longer than I thought. The first time I heard of it was last year at age 29...but they first showed on a culture in '05 and before that the lab just said "many gram negative rods" - so chances are, these things have been brewing longer than I thought - not surprizing, but more fuel to the whole my-cf-is-no-different-than-anyone-elses awareness campaign I've been running.
and i do have mucoid and nonmucoid. bah.

So as I was sitting in the germy too small waiting room, there was a kid sitting next to me: a little hipster with his baggy jeans and hat and ipod - looking sullen and annoyed and detached, and I thought, "well, there I am sitting there, another reincarnation of myself hanging out at the clinic" and I really wanted to spread the good news (ha ha, sorry) about taking ownership of your CF. I didn't, because, as I watched the old boy-me slouching in the corner, I knew that the old-me would have HATED the new me trying to tell me anything at all. No, no, I wouldn't have heard a word I was saying (plus, I am just not quite evangelical enough to start such a conversation with a stranger). But I realized how silly I must have looked all those years trying to project an I-ain't-like-them attitude. You here, ain'tcha??

c'est toute.

oh, one last thought. Why is kindness reverved for little old ladies? I went to get my oil changed today and even in the garage, it was really nippley - it is like 5 degrees here. SO anyway, I felt bad for the guy changing my oil, you could tell his hands were really cold. I wanted to just clasp them in my own and rub them to warm them up. And if i was like 65, I could totally do that and the guy wouldn't take it inappropriately at all, but if I tried to do that right now, OMFG, can you imagine how misinterpreted it would have been?? Such is life, no?

old blog 4

I headed into the hospital with this happy-go-lucky- albeit a bit nervous feeling - for my PICC placement. Here I go on my Cf adventure.

It didn't take long to revert. A new woman I am not. Well, not 100%.

I hate answering Cf questions: why are you here? How long have you had that cough? Have you had CF since birth? I am sorry you have Cf: my kids have autism and epliepsy and something else -blady blady blah.

Anyway, the PICC placement- despite two doses of lidocaine - hurt. and I am not a wimp. I have a huge tattoo on my back and have had a natural child birth - I can take pain. But it hurt - and it still hurts.

And then I turned all red and itchy from the vanc. But I can't have benadryl cuz I am nursing (I am not itchy now however).

and I had to argue with the home care people abou tthe timing of my meds. Sorry: it has to be on my schedule folks.

finally, my husband is being a butthead.

I hope the nurse who comes out tonight isn't a twit, I am not in the mood

old blog 3

Today I am sad about Cf.

It is kind of like I just got diagnosed. After 30 years, it is all too real. I have to thank my dad everyday of my life for all those swim practices and "ranger runs" that he made me take to clear out my lungs. Thank you for loving me this much dad. Despite all my crying: the man would literally drag me when I refused to run, all the while telling me it was for my own good - and all of a sudden, I just "got it." I am 30 years old and I get it now. I have to keep my lungs clear (duh!).

I didn't do my vest last night. I've had it for a year now and I am pretty compliant with it. I do my HTS every morning now, too. But my dad was here last night and I am still kind of embarrassed about the contraption and so I just didn't do it. Later, I laid in bed awake feeling guilty and nervous and imagining the bugs reclaiming their space. This disease is going to kill me. I cannot tell you for how many years I was sure that *I* would be different. I was not like "them." And I was lucky. I have been very lucky. I have a good set of mutated genes, somehow. But how long does luck last? this thought is in my mind all the time lately.

I keep thinking about IVs. I know this is the direction this disease is taking me and I am still having such a hard time wrapping my mind around that idea. I feel this sort of meshing of my identity with having Cf rather than a separation of the two: shannon has Cf. But I am still afraid with that admission. I am afraid to see the worry in my parent's eyes the first time I have to go to the hospital. The pity from my husband, fear from my children. The first time. I guess after 30 years we should thank our stars, but I don't want to see the naked worry. I don't want to have to leave my kids. My pride is not ready for this yet. Foolish girl.

I am afraid my children will be embarrassed of me: that I will cough somewhere and they will feel humiliated. Maybe I don't give them enough credit, but i was a selfish child and I think I might have been had I been my own mother. I think of wearing oxygen to their school fuctions and it makes my heart skip a beat. I don't want that to be me. And since I am so slow to catch on here, I feel like I am lagging in my self care. Why aren't I exercising? I think I am still waiting for my dad to come grab my hand and force me, swatting me in the legs with a stick when I lag behind. Those days are done. I am responsible for myself now. Maybe that's the scariest part of all. This is all up to me.
So a lot has happened for me Cf-wise in the last year. The biggest thing, is I finally got it. I have CF. Sort of like a frying pan to the head. So I've been thinking a lot of denial and proactivity and the course I am going to take from here on out.

Somethings came to light for me in how I got to be 30 years old without understanding and taking ownership of my disease.

I wrote this reply in a recent post about atypical CF:

Well that's the thing. When I was born in 1977 the prognosis wasn't so good: life expectancy of 18: mist tents, PT, antibiotics, etc.

But I kep doing fine. Healthy as could be. So then the docs started saying I was "Mild" and "not the normal case" and we believed that -that I was somehow the lucky one.

Even when I had my gene typing done and found I had Delta f508 and S549n I was told: well see, that one gene isn't very common, must be why you are so healthy.

Turns out both are class II mutations, so that second gene has nothing to do with why I was healthy. it was more good other genes and parents forcing me to be physically active and luck.

I wish that someone would have sat me down years ago and explained it to me in different terms instead of making me feel like my CF was "better" than everyone elses as it has been much harder to come to terms with as an adult.

Then, a real doozy. My uncle is 11 years post TX. All this time I thought he just went in, had his tx and there you go - a whole new life, a whole new set of lungs. Because he is from Chicago, I connected him and Q to talk about the medical situation there. Peeking in on Q's blog the other day, I read this:

Last night, I talked with Jim, a transplant survivor from Chicago. We discussed first year woes. He had them all: three bouts of rejection, a fungus they thought was eating his brain, the same reoperation I had, and a cardiac arrest 12 hours out of surgery. He had the damned nausea like me; he dropped down to 100 pounds at 5-10. Now he's 11 years out, almost 160, working with a personal trainer at the gym. He doesn't wear a mask or check his bread for mold anymore. He wants not to live in a bubble. It was good to hear his story and refreshing to listen to him express his outlook. He does not cling. He knows that all of this is an outrageous gamble, that there are a thousand things ready to go wrong at all times, weird outcomes galore, but that being alive is better than the alternative. We have to let outcomes simply be.

I felt like the rug had been pulled right out from under me. I know my family well enough to know that this information was kept from me. Maybe not out of anything but love, but still, I can just hear my mom saying, "We don't want to scare Shannon."

I only knew one other person IRL with Cf (as in a friend, of course I see other people at clinic) and she was always "sicker" than me. She had a port and spent a lot of time in the hospital: things I didn't understand. She got her call for lungs a few years ago, but sadly, she never made it out of the hospital. After her funeeral, I remember talking with my mom about how different I felt her life had been than mine and my mom said something to the effect of, "Well, that's why I never liked to get your girls together too much." As in, I didn't want you to see the ugly side of CF.

So maybe I inherited this denial from my mom. I know my dad spent (and still does) a great deal of time talking to me about my health - keeping my lungs clear, eating right - but still with that idea that if I do those thngs, then Cf won't "get" me.

So right now I'm just mulling a year spent nebbing and vesting and doing things for Cf that I have never done before. I don't know where the future with this disease is going to lead me, I don't know how internalized these words I've typed actually are. I am saying them, here to all of you on the CF boards, but I still don't know if I am ready to start telling the world.

Maybe I'll have CF coming out party. I'll pass out some of Q's CF Denial shirts and we'll all wear masks and I'll get some nitrous oxide to nebulize and we can take turns using the vest while we laugh and laugh until we cough so hard we can't breathe any more.
I know. I know so many of you have been through so much more, that I feel I have no right to sit here and complain. But it's my blog and I am going to.

old blog 2

This might be somewhat controversial, but since it is here in my own personal blog, I get to say it. Karenb started a post about the rollercoaster ride that is CF. Sometimes I feel guilty about these posts and don't make a resonse, because for me, the answer is usually no. No, for me CF is not a rollercoaster. Sure I have good and bad a days, but they aren't really CF related. No, I have never had trouble being spontaneous because of CF (excpet for the occasional "I forgot my enzymes" which I usually eat anyway and pay for it later), no I don't have trouble gaining weight, no i don't know what it's like to be in the hospital, no I don't have a port or a feeding tube...but I still have CF. Yes, I have an annoying cough and yes, I take enzymes when i eat...but right now that's where my story ends. I feel like people will think I am bragging or bringing their own health problems to light in someway. I certainly don't want to make people feel bad. And I know I start a lot of posts off talking about the condition of my CF, but that is because I feel that it makes a difference in how I view life and this disease. I know many others are healthy too, but I think I am the least interventive (is that a word) about this disease. I've just been living this way for so long, I cannot imagine making Cf anymore of my life than necessary - though I have become more proactive, mainly in admitting to mostly myself that I do have what is considered a fatal disease and at nearly 30, it may very well start catching up wtih me. But it hasn't yet, and I am proud and happy about that. Knock on wood, I can say these words for a while longer before I have to eat them (with 4 crean 20s).

Old blog 1

My uncle made up a sort of biography of my grandparents lives - interviewed them, put pictures in it and self published it. My uncle has CF, as did their first baby, born in 1948, and died at about 6 weeks old. I thought I would post some of the more interesting things that my grandmother had to say about it....

"That October Chris was born....her birthday was great, but it turned sour pretty soon. She was four days old and had to remain in the hospital, I knew she wouldn't nurse very well and they'd come in and kind of poke her cheek to get he to suck and she wouldn't do it. I had no idea something might be wrong with her; I had no idea about four days old she projected vomit violently across the room - green - and that scared me and I called the nurse. They came and took her right away and I knew something was wrong. But I didn't know what.

"I went home the next day without the baby....and I never saw her again after that day, which really hurt me afterwards. But I knew I couldn't go without picking her up and all this, which they didn't let you do. Anyway, she was in the hospital for five weeks. She was in the hospital and she got bad right away, really. Dad saw her and our doctor suggested that I didn't come up to see her.

"Dad used to go up and see Chris at the hopsital but he never fed her, isn't that strange? He never said much about all that, but it must have bothered him a lot. Here he'd lost his mother and now his first baby was very ill.

"Chris started coughing so the nurses didn't want to feed her either, so our doctor would sometimes leave his office and go down and feed her. Now that's a wonderful doctor. He called in a pediatrician and a surgeon and they thought she has some intenstinal problem and they would operate and send her home. My docotr didn't agree with their diagnosis. He said he went to the hospital library every night and studied and studied and studied and tried to find out what she had and he said, 'I think fibrocystic disease is what she has.'

"Our doctor was a man named Dr. Guinta...he was a marvelous doctor...he todl the doctors that if this - fibrocystic disease - is what he thinks it was, Chris won't come home again, and he didn't think it would be fair for the doctors to allow me to think I would bring her home any day . He told these other doctors that he was going to tell us the truth, and that is what he did.

"Chris turned real dark, and Dad just didn't want me to see her like that. Then that was just it. She couldn't eat. She couldn't do anything and she died on thanksgiving day."

"The doctor eventually diagnosed that Chris had cystic fibrosis. He said it is fibrocystic disease of the pancreas and would've never been normal. He said he thought everything worked out for the best. My one regret was that I never got a picture because in those times they never took pictures...Dr. Guinta told Dad and I, 'Go ahead and have your family. There's only about 16 cases of this in the world of this and there's no problem. Have your family.' So we did. then they came back years later and said it's two out of four when they really decided what it was..."

My uncle is now 54 years old. He had a tx about 8 years ago and is doing well.

So interesting to see what a differentce 60 years makes.

Thursday, July 24, 2008


Weclome! La Vie Cystique is still under construction, but for now I have added some blogs from another site for your reading pleasure.


So after it being a hot topic in chat (alternachat) last night - and then reading back through Tara's blog and the "family chat" post, I thought I would share my own opinions here, in the safety of my own blog. I really really try to avoid forum drama - I mean, I have enough drama right here IRL, I need it not in my cyber life as well.

Kev's response really made me think though - about being insensitive. I think I have been insensitive soooo many time with regards to CF. I realize we are all in our own battle here, in different places on our maps and while we are all somehow connected by the Cf thread, we're different in how frayed each of our ends are - and so while my end still goes through the eye of the needle with just a little spit, some people's ends are so frayed that there is no hope of ever seeing the eye of the needle again.....getting carried away on the metaphors here, I'll stick to the point...

what I am trying to say, I think, is that I am sorry. I am sorry for not better understanding the battle this disease presents. More than once I know I have selfishly thought, "I hope that doesn't happen to me..." when reading the different posts. And so I am sorry that I haven't put myself in the shoes of all those who are unable (but might have otherwise wanted to) - to have children, for whatever reason. That I haven't thought more kindly in genereal for all of us suffering in our own ways - because no matter how we stand with this disease, surely no one's struggle is less important than anothers...?

After chatting last night and reading the family chat thread, I reread what I wrote in Tara's blog, to see just how insensitive i might have sounded. But I think I can stand by what I wrote. Children, once you have them, usually do become the love of your life - generally, there isn't much you can do about that, and often, people without kids don't fully understand that (and no, I do not think that makes them self absorbed - it's like anything you're not a part of that you may not fully understadn - do we expect our non CF counterparts to ever fully understand life with this disease? doubtful); and I do hope that those who are having a hard time with the children issue can find peace with that as well.

At the same time - sometimes mom chat IS Cf chat - as a mom with CF, managing kid care and disease is a job in itself, and I think as a mom of 2 and a nursing mom as well (21 months, yo) I have a lot to share that is related to CF and being a momma - and while I don't mind saving it mainly for the pregnancy board for the sake of the community, i don't necessarily like the idea that that bit of my CF knowledge should be segregated as if it less CF-worthy because not everyone can relate to it.

I think a big part of who I am is in working on practicing compassion (ahimsa for the yogaphiles), and it is something I can ALWAYS do better, and I will, here.

I want to believe down to the letter

When I was 17, my nine year old cousin was killed. It was July the fourth and I'd been out doing unsavory teenaged things with my friends. I stumbled home sometime around my allotted curfew to find a note that read simply, "Elizabeth has died."

I stared at the paper, assuming it was a joke, a typo - certainly not MY Elizabeth, certainly not dead. But as I stood at the counter with the note in my hand, I heard a buslte in the garage and my mother burst through the door followed by my bleary eyed aunt and uncle. It was true. Elizabeth had been in a boating accident and had been hit by a jetski. She died at the hospital of massive head trauma.

For the past fourteen years, the fourth of July has been Elizabeth's holiday. I haven't had a year go by that I don't watch each explosion of red and white in the sky without attributing them to my cousin: a celebration of her short life.

But tonightt, as I sit here sunbaked and slighly buzzed, procrastinating, as always, strapping into the vest and attaching the neb hose, I'm thinking of another celebration. A couple hundred miles away a girl I only peripherally know through this site is lying in a hospital bed having been given a second chance at life - from the very very brink of death, she lives. And while I really don't personally know her, I know that she represents strength and tenacity and will in the face of this disease - as dear FOP states, her prana is strong. Tonight I think of Pepe and her famlily and the people who love her so very much and I know that the bursts of color aren't just a celebration of a life lived but of a life yet to be lived.

This year, I will sit on my porch and I plan to send up a litle prayer with each boom, for Elizabeth, for Pepe, for my kids and husband and family, for all of us struggling with Cf - with life in general - that there is always hope and love and that we may continue to be able to believe.

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))))))))))))))))))))))))))0))))))))))))))))))