Tuesday, September 30, 2008

it's 16 miles to the promised land

swimming day 3

700yds - 28 laps. Felt good. It was easy, almost. I felt like I could have gone even longer. I am doing short sets (more for my own recorcd: 150 warm up, 150 kicking 3x50 on 1:05 (slow, I know) 100 kick 100 im 50 warm down) and I want to work up to a longer warm up and faster sprint sets, but we'll get there.

One of my LLL mom friedns was the lifeguard and she was rying to get me to get a job lifeguarding there. She said if I wokred only 4 hours a week our membership would be free. Interesting. And, she is going to swim with me on Thursday.

So, alrerady my pants feel looser. They're not, I'm sure, but it feels good.

Monday, September 29, 2008

your hair was wild, your eyes were bright, you were in a rage

There is so much saddness assosciated with CF. I mean, it's not like this is a big surprize, but it just kind of hit me. We're all chased by these CF demons.

I stumbled acorss something I wrote about 10+ years ago, long before I gave CF the time of day. It's interesting to me, despite heavy denial how it was always there. (disclaimer: this is by no means a great piece of writing I am trying to post, but only the sentiment that was with me long before I ever ackowledged it)

greasy hair, pimply face, congested lungs full of thick salty chunky frothy yellow gunk. It makes its appearance every morning unwanted and unannounced but she is forced to acknowledge it. An unwanted visitor, a guest that has much overstayed its welcome. She tries daily to force it out, but it won't leave. It fades, it spreads, it glares at its audience, "I am here, invading her body, wracking her with spasms, forcing her to live with my invasion and you must watch and wonder and feel sorry for her." She is forced to assume its foulness as its represenative while it laughs inside. circa 1997-98

And it's all entwined, isn't it? Where do I end and Cf begins? I no longer feel like I know. My weekend was kind of sad. I get it, the lonley bug, every now and then. And I know just how to fix it. Except I am trying not to fix it that way anymore.

Having kids saved me from myself, I know that. I know the path I was on with my life and it wasn't good. And it's not like those demons aren't still here (oh, my little monkey), I've just tightened my reigns. Sorta. Plenty of times I've let the horses loose for a gallop, I just haven't let go again. yet.

But this weekend my husband was being...well, I just felt unappreciated and I while I pondered laying down in the street to be run over by a bus, because you know, then they'll love you, once you're gone, I relaized that Cf leaves me in a total different place at 31 than it did at 21.

I am afraid of so much now. As much as I was ready to pack my bags and head for the hills this weekend, I am afraid of Cf now. Suddenly, I need help. What a hard thing to swallow. I want to say NO! I need NO ONE! That has always been my motto. I need no one. But I realized that I do. I need support, I need understanding. I need it because of CF. Because I am supposed to be strong and sassy and independent. And why is CF stripping this from me? Why am I letting it? And is it Cf I should blame, or it that just an easy out?

Saturday, September 27, 2008

swimming swimming in the swimming pool, when days are hot when days are cool in the swimming pool

Swimming day 2

Things actually felt a little easier in the water today. My arms still ache as does my neck, but I swam 22 laps today, so woot for increasing!

My mom mentioned that my body doesn't look like my body and she thinks I should have my thyroid checked. I am so reluctant to do anything medical. While I would love any reaosn for this weight gain rather than I-sit-around-too-much-on-the-computer-and-eat-too-much-junk, I abhor medical stuff. Nothing is holistically looked at - yes, my weight gain could be thyroid or it could be PCOS (polycystic ovarian syndrome - not unlikely) or it could be enzyme rleated or metablosim or just being 31 and not active enough or perhaps a combo - but CF messes everything up. It becomes this big red flag that deterrs fromt he original plan.

If you mention CF to medical people who don't know much about it (most of them), you get generalized ideas or really dumbass shit coming out of their mouths which then makes the whole appointment one big annoyance. But you can't discount CF in things either....argh. I generally leave the CF off of intake forms, but in this case, I can't help but think that someone needs to evalute my ENTIRE being, not just my buddah belly. Plus I got blown off with my concerns by my CF doc as extra weight=good; PFTS are up so proofs in the puddin'.

I think I am going to visit my stepmom - a gynie, and get an ultrasound of my ovaries, have her run a thyroid check and leave it at that. I've changed my enzymes and I am exercizing. I can't do - I won't do - anything else (unless something shows up on one of those tests). But even making that appointment seems...exhausting.

I know people are tired of me complaining. I hear so many people reply to me in exasperation, "but you're not fat!" What it boils down to is this: I have had a certain body image for 30+ years, and this body I have now does not fit into that image. It isn't about numbers and clothing sizes and BMIs, it is about how I FEEL. And I don't feel good. I feel sloppy and unattractive and I don't like it. I cross my arms over my belly when I sit and feel unhappy each time I see myself in a mirror. Whether this is a serious case of vanity gone bad or resistance to aging, I don't know. What I do know, is that I don't like this feeling and I want to change it.

If this exercize doesn't help, then I know the problem is just as mental as it is physical.

Meanwhile, I will visualize my goals and keep paddling away in the YMCA swimming pool. At least I am in shape enough to swim in the fast lane instead of in the slow lane with all the old folks. That's something.

Thursday, September 25, 2008

when a girl walks in with an itty bitty waist and a round thing in your face

Day 1 swimming.

I only swam 20 laps (500 yards) and that was a haul. But I DID IT! woot! It felt pretty good too, though my arms were so tired in the shower I could hardly wash my hair.

Please, dear belly, repay my efforts by shrinking down. thank you. Butt and thighs, you too.

Tuesday, September 23, 2008

you walked into the party like you were walking onto a yacht

OK, so. Tomorrow I am meeting with the guy from the YMCA to see if we qualify for a discount, but whether we do or not, as of tomorrow we will be Y memebers, which means, the swimming begins. In honor of that change in my life, I've bravely opted to post to you my reason for needing to swim (despite the lung issue, we all know that one). Mah belleh. What you are about to see is the past, present, and future (If I don't do something).

The Past:
oh flat belly, where art thou? And this is post one kid, too, btw.

The presnt. First, I let it all hang, second, I sucked it in as much as I could and stood up nice and straight.

The future, or rather, what I'm afraid of (and what I feel like).

I plan on posting as I go so that someone besides me knows what I am doing and I can have some form of accountability.

Next time, butt shots. Just kidding.

I just previewed this before i posted it and I want to cry. My belly makes me just sick, I look exaclty how I did at 6 montsh pregnant. I want to delete these so bad but I need extrinsic motivation to stick with my plan, so public belly shots it is.

the hills are alive with the sound of music

Music is memory, tell me yours. Here are some of my highlights:

As a small child, the sounds of Bob Marley are what I remember most.

I remember running around my house singing "Like a Virgin" when I was about 8. My dad got angry and told me not to sing that, so instead I sang, "Like a surgeon," and when he got mad and said that he told me not to sing that, I could sassily reply, "I saig surgeon, not virgin, dad!"

6th grade was my introduction to Poison and Guns N' Roses. I was never the same.

7th grade found me a fan of Sinead O'Connor - who no one else liked (no one still likes Sinead, but oh, what you're missing).

8th grade....Bel Biv Devoe, yo.

High school....Freshman year - "Stairway to Heaven" and Kipp J. such a jerk and not even cute, but ah, unrequited love.

sophomore: Indigo Girls, all the way baby. "Romeo and Juliet" still brings my teen angst to a head. They Might Be Giants "Birdhouse in Your Soul"

Junior: Phish, Grateful Dead, dancing to "Scarlet Begonias" at the beach and singing "What a lng, strange trip it's been" and the intro to my man LC, Leonard.

Senior: Liz Phair (and I kept standing 6'1" instead of 5'2" and I loved my life and i hated you"), Jane's Addiction...Ted, Just Admit it (Sex is Violent)

College: more Bob....I can still remember "I need a hammer a hammer a hammer to hammer them down" as we sucked nitrous oxide at parties. Good for the lungs, eh?, Alanis Morrisette just released "You OUghta KNow" and lots of Jane's...later I got into Sublime and Fiona.

and so it goes. Music. Life is a medley and I can think of a tune to go with any situation. It's a hobby.

Friday, September 19, 2008

I'm 5'2" and I'm giggly wiggly tell em again what did I do why are you scared of me?

A couple random memories:

If you're anywhere near my age, you might remember they had these dolls when we were young that you could pull their hair to make it grow longer. Id on't know what the doll was called. Anyway, so in 2nd grade there was a girl in my class named Shawntalina. One day she had short hair, the next day it was long. She had extensions put in, but I knew nothing about extensions, so I thought black people had hair you could pull to make it grow longer. seriously. A while later, she got in a fight with a boy named Terrecne on the playground and he ripped out two of her extensions, but I thought he had ripped her braids right off of her head. I couldn't believe she was so tough!

In 5th grade, there was a girl name LaToya (who had a twin named LaToy). LaToya was a total bully. She was full grown at age 10 or 11 (maybe she was even 12) and used to wear a shirt that said WWA on the front and on the back it said Women with Attitudes. Anyway. LaToya had it out fo me for some reason. In 5th grade I was about 4'6" and maybe 60 lbs - teeny. So LaToya, all 5'10 120 lbs of her would just harrass me. Once I had my legs through the bottom rung on my desk and she came up and stomped the top of my foot over the rung and ripped my banana clip out of my hair and said, "I'm gonna kick your ass after school." I stood up and said, "Oh yeah, well I'll shine it up for your footprint," or something equally dumb, but apparently my tiny little cystic self intimidated her enough that she backed off. Years later my friend Lo confessed that she thought more than once my mouth was going to get one of us killed. I like to think it saved us though, from playground torture.

My dad always said, "It's not the size of the dog in the fight but the size of the fight in the dog." (which I want to attribute to like Dwight Eisenhower or something).

Anyway. I believe that, I really do, and I have always led a spirited fight against CF. I think last week's clinic visit only solidified my original plan - to beat the fuck out of the disease before it beats me. So I joined the local YMCA and I am going to start swimming again. It's been a long time coming but it is now time to shed this fat belly and toughen up these lungs. They've life left in them yet.

Friday, September 12, 2008

while you're at it why don't you sign me up to sell me out

So get this. Clinic today. I went in actually preparing myself for maybe needing IVs. I've been kinda junky and tired lately. I figured maybe August's orals had done their job and it was time to bring in the big boys.

So you can imagine my surprize when I was satting 99% - last visit I was 96. And you can further imagine my surprize when my PFTS were a steady 2.08L - up from 1.94 ~2.08~ that is like the highest I have had in YEARS. And I did it three times in a row, no fluke here. Go figure.

So I did bring up the idea of Colistin, but doc felt that with PFTs at their highest that my junkiness was probably weather/allergy related and to let it lie for a minute. No argument here, I am not one to add anything into my regime that isn't necessary.

My weight was up another 10 pounds since June. TEN POUNDS PEOPLE. Doc thinks my pfts are related to the weight gain and wants me to keep it on. I still feel like a lard ass (125.9), but I can't look a gift horse in the mouth, and with PFTs up, I gotta go with it. So size 8 I am (still not happy, but I am reaching acceptance). We did change my enzymes though to hopefully help with my bloating and gas - so I am now on 4 creon 20 and 2 pancreacarb m12 with meals versus 6 creon 20. We'll see. If this baby belly goes down maybe I won't be as upset about the actually scale numbers.

I also got an rx for some anxiety issues. I felt kinda wierd asking, as I got a little paranoid he'd see my little green eyed monkey peering over my shoulder, but my issues are legit and so we're in like flynn.

Finally - there was a respirtech rep there peddling the new vest. We had a nice talk in the waiting room. I declined to try on the vest and explained to him that for me, vesting is still a pretty private experience. And no, I know for a fact my insurance is not about to buy a new vest, mine isn't even paid off yet. But later, when I was back in my exam room, I could hear him telling someone else to go to cf.com and how he had info there, etc. and I was all prepared to tell him exactly what I thought about those fools. But, he was chatting up some med students when I was leaving and I felt silly waiting my turn just to bad mouth cfuck.com. I have his card and debated emaling him. I know it won't make a difference, but I feel almost like it is my duty to educate people on why they need to promote themselves elsewhere.

That's it. Oh, and I drank a cup of coffee today and I have been talking to everyone a mile a minute, which means i could easily keep typing away here. but I won't.

Tuesday, September 9, 2008

do you remember Yoda, he was a muppet also, Jim Henson made him he wasn't real

Time does get away from us, doesn't it?

I've been busy doing a lot of nothing.

I'm back in school. Three classes to go (not couting the one I am in) and I am D.O.N.E. - unless I go on for a PhD, which is a nice thought, but pretty unlikely...though not impossible. I have to admit, if I did it, it would really be a retaliation against my dad, who has a PhD in anthropology, as a, "you ain't all that," kinda thing. Yeah, there's some issues there. :)

So this class is called "Life Writing" and it is a combo writing/lecture credit. Basically we are reading scholarly personal narratives with a WWII/war-in-general theme....The War Complex, Patterns of Childhood, I Will Bear Witness, etc., and then the final paper we need to set our own narratives within a cultural/social context. So....I keep thinking the whole CF - disability rights thing. Half this group was in my class last semester, so CF will be no surprize to them - but i just don't know. My Cf out-coming was not nearly as liberating as I'd expected it be and I am not sure if I want to put it all out there again. It's just I can't think of any burning issues that I can really weave a personal narrative into....maybe breastfeeding. But can I stretch breastfeeding propaganda for 3000 words without sounding like fanatic? Not likely.

Finally, as I was driving home from class last night, it was pouring rain, but I was still opting to drive quite fast. I started thinking about death. I feel like Cf has given me a certain complacency about death. While i know there are few certainties in life, and my end could come at any moment - I can't help but feeling that since it is a pretty good possibility my end will be Cf-related that there is a sense of calm or knowing in that. It's like I can take some added risks because I already know the finale of my show. It is a weird feeling and not one I really ever entertained before.

Nevertheless, I am going to knock on some wood right now, lest Murphy decide to show me who'e boss and I choke to death on the popcorn I am about to make.

A word on popcorn. If you ain't popping it in oil on the stove, you ain't eatin' popcorn.

fare thee well.