did you think I come to talk am I a fool or what?

o
Well, I'm not healed, but I'm certainly no worse. My breathing ability has returned to normal but my sinuses are KILLING me. I'm not sure why, it's wierd. I wonder if it might be a bit allergy related, we've had a bit of a thaw here so maybe that stirs up the gunk? Maybe just some sort of headache from being on loads of drugs for three weeks? Who knows. Adding the zithro in seems to have made a big difference in how I feel for some reaosn though (maybe just timing?) so I am definitely going to ride this out for a while.

I go to clinic on Friday and I am demanding some answers.

I often think I need to switch to a bigger clinic. Mine seems rather inefficient and it's run by a very overworked NP. You can't really get to the doc, the waiting room is too small, and sometimes I feel like I'm the boss when I want someone else to be the boss, if that makes sense? But at the same time, I am a creature of comfort and I am comfortable with these people, I have developed a relationship with them and I'm lazy. I don't want to have to drive 2-3 hours to go to the clinic when I have one I can ride my bike to. I think, sadly, I'll have to get sicker or recieve sub par care for something serious before I really get motivated to make the change. I know that seems ridiculous, but it's the honest truth.

My fingers look incredibly clubbed these days. It doesn't seem like that should happen so quickly after an illness like i had - something acute rather than prolonged, but they are definitely clubby. I am not all that fond of my hands anyway, so ugh.

I'm back in the pool though. My energy was a bit down, but I can still do my usual 1/2 mile routine. My shoulders were really really sore though, and I can't help wonder if that isn't the levaquin at work - I was almost in tears last night because of it (plus I walked into a closet door the other night resulting in a nice bluish bruise on the side of my face which has been throbbing as well. Wah wah, poor me).

I think I need to say something positive here before the pity party comes to an end...but when all else fails, I go to the music, because, as is my motto, life is a medley. yo.

Here is the song of the day - M.I.A. "Paper Planes"
I've been a quasi-M.I.A. fan for a bit, but this song has been on my rotation for a few days. It is in the movie "Slumdog Millionaire" as well. Enjoy.

there's a silver lining shining above me

I'm sick. Again. This one is a doozy. My doc put me on solu-medrol and levaquin (again) but as I was reading the patient info, the levaquin said risk of tendon rupture is greater if on steroids. Great. I have not been able to swim all week, 1) because the baby has been sick too and I could not take her to the daycare there in good faith and 2) because on Wednesday night my airways about closed down and I spent the night wheezing and coughing (trying to cough anyway, it was the darndest thing. I would cough like the dickens but nothing would come up) and not sleeping. But I don't think I should swim while on the solu medrol because I already feel like levaquin and cipro do a number on my already arthritic feeling joints. Not swimming kind of sucks though. I mean, I hate doing it until I am done with it but then I feel so good that I did it. But I certainly don't need any tendon blow outs. Boo.

Looks like I also might try taking zithro 3x a week for a while and see how that works out. I wanted to take it with the levaquin but apprently there is some risk of heart problems if you mix the two??? I swear I know people who take zithro and cirpo, so who knows.

I have not had the steroid really kick on yet. I hvae only used solumedrol once before and I was a bit manic on the beginning. I am hoping to harness some of the energy to work on some sewing projects I have been procrastinating on.

I am really hoping my period will show up in the next few days too, just to ensure that this goes down as the greatest week of my life.

living in a powder keg and giving off sparks

My Vest died by urine and not having it for two days (got a new one today) + changing up my routine to include some sprinting = lots of coughing in the locker room post work out and shower.

One of the owmen in there came up and asked me if I had asthma.

Yes was on the tip of my tongue, hanging there, trying to escape, but I swallowed it and said, "Are you familiar with Cystic Fibrosis?"

Oy. It was not that bad. She was surprized, as usual, but then she talked about educating people and dying, but not that usualy annoying way. I thought it was kind of cool she spoke rather freely about dying and I was not offended. Makes me wonder if all the people prior who I've deemed as annoying and crass in their remarks maybe weren't so bad? Perhaps it was the reciever that had a malfunction?

I don't know, but these coming out moments seem to get a bit better as I go.

No school tomorrow means a four day weekend here. Negative a gazillion temps outside means a bit of stir crazy within.

Girls night tomorrow, weather can't keep me down. I am trying to get some fingerless gloves cricheted beofre I go but I am giving my fingers rope burns from my rabid weavings.

We got stuck int he snow today and a man in a white jeep stopped and helped push us out. I love heroes, there are so few anymore.

you're an obsession, you're my obsession

I have a lot of time to think while I swim in the morning.

So here are some thoughts:

1) There is a guy who swims who has no legs below the knees. He's pretty fast. I admire his upper body strength. I was thinking we could make a crip swim team. We'd be pretty good, too.

2) I think my last post might have made it sound like I am unhappy with my life now. I'm not. I've taken quite well to domestication. And it was the saving grace for my health. But it is a different life than the one I lived as a single gal. Both have their merits, though honeslty I would pick this life over the former anytime. And they are not nec. mutually exclusive, I certainly have a lot of hold overs from that time - I am still the same person, just a little softer, a little slower, a lot more aware.

3) Someone asked abut denial in my family and I thought I would explore that, too. When I say I was in denial I mean simply that while I knew I had CF, I lived as if I didn't. I wasn't overly symptomatic (though with PFTS just in the 50s and 60s, I certainly was symptomaitc, I just didn't know what it felt like to feel good) and I chose not to go to clinic - once it was my choice (except the once a year obligatory visit to get rx refills) and I just pretty much ignored CF. I coughed. a lot. But I just didn't let it stop me. I honestly felt like my Cf was different than anyone elses. This, I think, is old news.

I don't know quite where this came from though. I mentioned before that my mother's side of the family is very steeped in ignoring things (as I said, my uncle didn't even know he had CF until 3rd grade when his teacher told him). They also were known to hide unwanted pregnancies, etc. So it is a don't see it , don't talk about it mentality. I don't remember my mother ever acting this way outright about my CF. She certainly did everything the doctors told her to - but she also very much let me be in charge of my care.

I look at my PFTS from age 11 - 46% and sats at 89 and I think, why the hell did no one put me on IVS? The answer is threefold: I don't think home IVs were as available then, I would have thrown a fit at having to go to the hospital, and my mother had to work, so if orals were sufficient, that was easiest for her. But really, an 11 year old probably should not have been allowed such say in the matter (though further I wonder why the docs didn't push it?). I recall as well (maybe around this same time?) having a pharmaceutical rep bring a (HUGE) nebulizer to the house. I flat out told the rep and my mom that I would not ever use that thing - and I didn't. And no one ever made me.

So I guess my denail came in some ways from the fact that my mother was content to let me lead the CF way and I wanted CF to be sort of an ugly secret. She didn't make it that way, but she certainly didn't make it otherwise.

My dad was different. He was very much determined to keep me healthy. His tactics were through exercize. Once I was strong enough to make CPT a chore - fighting, running, screaming, hiding, refusing, etc. my dad put me on a swim team. A serious swim team. And I credit that move 100% for keeping me healthy. In the off time, we had to go for family runs (horrendously embarrassing occasions that often looked like this: my two brothers and sister jogging along ahead of the crew while my dad, often called "Hulk Hogan" or "Chuck Norris" fell behind either literally pulling me along beside him or swatting me in the back of the legs with a switch to keep me moving).

The swimming seemed to do the trick, however, and I wasn't sick very often. My PFTS have always been pretty low and I recall doctors telling my paretns that they weren't too indicative of my helth as they didn't seem to represent how I was doing overall. Maybe this is true, maybe it isn't. But what happened is I just became labeled "mild." Everyone considered my Cf to be mild and so did I. To me, mild = no big deal. So it was no big deal.

My mom didn't really talk about my Cf, but my dad did all the time. Embarrasingly so sometimes. He would call me in college and remind me to work out, to be a "Physical fitness fanatic." I did aerobics and stayed fit in college - until i moved away with a boy - which is when things really took a dive. (Life in the fast lane, surley make you lose your mind).

When I met my husband, who is diabetic, I rmember complaining to my dad that he just wasn't talking adequate care of himself and my dad looked at me and said, "Frustrating, isn't it?" and I knew exactly what he meant.

4) I don't thnk too many paretns of Cfers read this, but, my final swimming thought was that I truly believe that serious exercize is the key. Not piddley once a week swim lessons at the Y but hard core olympic grade exercize. I realize not everyone can handle this, though it would seem the earlier you start, the better, but I can only believe that years of swimming - as a child 3x a week, as a teen twice a day for four months (then off the rest fo the year - with intermittiant track or summer swimming thrown in) was a big part of the puzzle in how Cf affected (or didn't) my body.

beautiful beautiful beautiful, beautiful boy

Today is one month of swimming. I filled out a mile card to keep track of how far I've swam and it looks as though I have swam about 5 miles during that time. Accordng to the scale in the locker room I haven't shed a single pound. I feel better though. Each time I leave the locker room, wet hair dripping, face flushed, I feel successful: I am being proactive; I'm doing something. I'd love to see the fruit of my labor in the reduction of cottage cheese on the backs of my thighs, but I am not as upset about it now. Well, no, I guess I am. But I still feel better physically. Next week I push myself to 900yds (36 laps) which is a half a mile.

I have a cold though. An ugly one. A stuffy nose seal barker cold. It sucks. I am holding off on abx as I don't feel it is in my lungs yet and I am hoping with swimming and vesting I can keep it out of there.

My son turns 9 on Monday. For nine years I have been a mom. My boy is a challenging child and I don't always feel I've done a great job of being his mom. I constantly worry I am fucking him up somehow and that i can do better. But I am also pleased that I've seen him this far along. He's a beautiful albeit mixed up little soul and i pray each night that I am here to see him continue to grow and flourish - and to someday be able to look back on this childhood from a standpoint of success.

sniff me out like I was tanqueray

Yesterday while I swam, I got SOB. I have never been SOB while exercizing...well except after I ran the 440 in high school in my ill-fated attempt at the track team - that left me gasping for air, but it still wasn't the same.

I have a routine down. I start with a warm-up followed by a kick set, a sprint set, more kicking, a few laps of each stroke and a warm down. I am up to 30 laps. I'll add two more laps this week.

Anyway, during my warm up I had to cough. As I've stated before, I can cough and swim. I mean I can't have a huge coughing attack, but I can hack one up and swim at the same time. Years of swim training results in all sorts of interesting abilitites. So, I was warming up and coughing. Coughing early in any exercize routine is normal for me. I usually cough cough cough and then I am pretty clear for the rest of the time. But I coughed and then I never really was able to catch my breath. Each time I turned my head to breathe I was gasping and left feeling like I wasn't getting enough air in. It was scary.

But the thing is, I didn't stop. My warm up is 8 laps and I just refused to stop before that. It was like a pride issue or something. Or serious denial. Or maybe the fact that there was a cute lifeguard. I dunno. I just know I kept swimming (just keep swimming swimming) even though my body was begging me to lift my head and doggy paddle whilst gasping for breath. No way.

After that I had my 6 laps of kicking and I felt much better. My sprint set was fine and didn't feel SOB, so I don't know. I do know that after my swim my face was RED. I always get red after a serious work out, but I didn't feel I'd worked out that hard. I looked like it though.

I hope it was a fluke. A clogged airway or something because it really sucked.

And now, Halloween party pictures.


My mom as Cruella De Vil and my babe, Elmo


My step-mom and dad. MY dad refused to wear his clown hat so he dubbed himself "Shaka de Clown"


My husband, the cowboy and his sidekick Elmo.


My stepson - a hippe. ~Sigh~ he has so much to learn.


Elmo and me


Moi

how long 'til my soul gets it right?

An old friend I'd found on Facebook emailed me yesterday. It was an article from a San Franciso paper that mentioned CF and the cost of caring for CF. I actually had no idea that this old friend even knew I had CF. And that he'd think of me after all these years. It was interesting. I wrote him back and further explained some of the information the article touched on. And I was OK with that. There was a time I would have been mad at someone for sending me a Cf related article because I WAS NOT LIKE THOSE PEOPLE. The farther away that time gets, the funnier it seems.

So the swimming. I realized yesterday that I am not pushing myself as hard as I can because I don't want to cough. I still cough a bit as it is, enough for someone to comment on it already. But if I really start working I am going to do some serious coughing and I just don't want to. While I have masterd the ability to cough underwater and cough while swimming (oh, yes I have!) those aren't productive enough coughs to be able to hide a serious coughing attack. Damn this disease.

I also had another swimming epiphany. My dad put me in competitive swimming when I was 9 as a means to keep my lungs clear as I was completely out of control if my paretns tried to perform manual CPT on me. I HATED the swimming. I was always the smallest, slowest one. I could never keep up. After 20 years it finally occurred to me that maybe that was Cf related??

Now, I have to admit that changed in high school. The team I was on as a kid was a serious USS swimming team. When I got to high school I was actually pretty good, because it was a different caliber of swimmer and having trained as a USS swimmer for years before I was not too shabby as a high school swimmer, which made me like swimming a lot more. I eventually became a co-captian of the team and was an alternate at State. But still, I did hit a plateau in my swimming that I never did get over while other girls who had been slower than me eventually passed me by. It never, ever occured to me until just the other day that Cf could have had a thing to do with any of this. But maybe it did? If so, I am actually glad I was in denial for so long, as how easily that could have become a crutch or an excuse for failure?

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.

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.

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.

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.