Friday, December 26, 2008

that's just the way it is

Dear PA,
I hate you.
love, your unwilling hostess

Thursday, December 18, 2008

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.

Monday, December 15, 2008

don't let the sound of your own wheels make you crazy

I got sidetracked by The Eagles. Cf banter to resume later.

I was listening to "Desperado" because I have dubbed that my son's song and I was lost in thinking about his growing up, what our lives have been like together. It's kinda like he and I just bumped into one another and we're making a go at it. Fiercly in love but at each other's throats. And just when i felt like crying thinking about my boy, the song was over and it was "one of these nights" and I could smell the rum and smoke, and hear the distant jukebox, dancing on bars and hiding in bathrooms and feeling sexy, like I owned the place. Which is "Victim of love"..." a room full of noise and dangerous boys still makes you thirsty and hot..." as it played I thought of past lovers - many bad decisions - but what a hot breathless time of life that was. My friend EE always said "Life in the Fast Lane" was my song when i was with STG, my first love. We were 18 and so in engrossed in one another and living so hard. Sometimes I can't ever believe the life I have now is related to the one I lived a million lifetimes ago.

I am not a huge Eagles fan, it was just the right moment to hear some old songs and get lost in another time.

off topic: artsy shit. Made for my friend's son's 3rd birthday. An idea I hsamelessly stole off the internet

Friday, December 12, 2008

just take those old records off the shelf

Clinic today. PFTs were 74% - woot! That's the highest in years. Weight was 131.9 though - WTF. I am getting my thyroid checked first off. I was 116 in June! And I have been swimming religioulsy since September. Depressing.

Anyway, I am going to list my PFTs as I got some copies of old labs. I find them very interesting.

agePFT (FEV1)
31 74 (Dec. 2008)
31 72
30 64
30 54
30 50 (Nov. 2007)
29 57
29 61
29 64 (Nov. 2006)
28 61
28 64
27 54
27 58
26 63
26 57 (25-75 18%)
25 60
25 54 (Nov. 2002)
24 53
24 53 (Nov. 2001)
23 61
22 52
22 60 (7 months pregnant/ Sats 93 on room air)
21 54
18 75
16 96 (25-75 130%)
What concerns me here is this big drop between 16 and 21 (hello marijuana, how are you?) - but watch, it gets wierder
15 91
14 70 (what was behind the big jump up to 96???)
12 81 (big drop,again)
12 82
11 81
11 43
WTF happened here?? Was I sick? sats were 89 - I must have been sick...perhaps IVs would have been a nice touch here?
11 70
10 65
10 58

I am not sure what to think of all this. Look at all the years I spent in the 50s and not aware of it. Makes my 74% today all the sweeter.

A few interesting Doc notes I thought I'd share:

"Over time it is my goal to educate her as best as possible to take more ocntrol of her disease and look at modalities to help her. She is certainly a very bright young woman and in time she will begin to understand this better."

That was in 1996, I was 19. Took me another 10 years to figure it out.

and this from 1994 "I did suggest that she have a screening chest x-ray and chem profile, CBC and PT/PTT anually to screen for liver disease, diabetes and occult lung disease which may not be apparent clinically ot her. They'll consider this, although she's somewhat resistant and even with the minimal linitations that she has she seems to resent her disease a great deal."

Wednesday, December 10, 2008

Just the two of us, we can make it if we try

I've been thinking a lot about the whole denial thing and what it means with regards to other aspects of my life.

In a lot of ways I think denial served me well. I never lived life focused on CF, I never used it as a tool or an excuse. I sometimes think I am lucky that I treated my CF as I did because I am still susceptible to almost all abx, my veins are healthy, I haven't been overly radiated, etc. Coming to terms with things in my late twenties was the right time for me. Luckily my health didn't really suffer for it. Yes, maybe I'd have PFTs in the 90s instead of the 70s had I been more aggressive, but who knows.

Yet now that I am trying to take a more proactive stance I see the benfit of aggression and focus. I'll never get back the lung function I've lost, and perhaps I didn't need to lose it if I'd done proper care and treatment. It is with gusto that I want to hang on to the 73% I've got left. I've come to understand that CF treatment is a large part prophylactic rather than reactionary.

While I was swimming yesterday morning I started to think about my son. Now that my daughter is 2 and talking and communicating up a storm I realize how delayed my son was in his lnaguage development.

When he was 10 days old, my boy was hospitalized with an infection in his scrotum. It was very wierd and no one was sure where it came from or how it got there. He had a surgery to drain the infection, but after a few days he began spiking a fever and we were sent to Riley Children's hospital. After a week, my baby was finally diagnosed with bacterial meningitis. The theory, though no one really knows, is that his bowel perforated slighlty at birth and leaked bacteria into his scrotum. His bowel sealed itself off leaving a sac of bacterial puss in his scrotal sac, but when the urologist cut into the scrotum he unwittingly spread the e.coli into the bloodstream and then, because doctors were understandably looking at the wrong things (bowl issues, structural deformities), by the time infectious disease team was called in to do a spinal, the bacteris had spread into the spinal fluid.

At the hairiest of moments, the infection was causing a small legion in his brain. Neurologists told me that if the infceted part of the brain did not begin to resolve quickly they would have to cut a hole in his skull to drain the fluid and pressure. Thankfully, Gentimycin and Vancomycin worked like charms and we were able to forego any neurosurgery.

After we retunred home, my mother and a perdiatric neurologist friend of hers hounded me over and over to get a battery of tests done to assess if there was any permanent brain damage done to my son so we would know what we were facing.

I declined. Over and over. My reasoning: I didn't want him to have a crutch. I figured that if I never knew any different I would assume that he was a normal boy and would never try to compensate for some delay or problem. Much the same way I dealt with CF.

Now, at 31, and raising my second child with some small amount of experience, I see the gaping problem with my decision. Much in the same way I wonder "what if" with CF, I look at my son.

He struggles with writing, with attnetion, with language (all related to the left occipital lobe where his infection was). He gets in trouble at home and at school for not listening. SOmetimes he seems like such an unhappy boy. So I sit and wonder with the guilt only known by other moms if I did him wrong by not finding out what his limitations might be. What if I might have known he'd have trouble with language and had worked with him since infancy? Where might he be now? Maybe not suffering to write a short story in the third gtrade or constantly barraged with, "You just don't listen!"

I can see how denial benefitted me, but I'm beginning ot think that it just is not the right way to live life. I still like to turn a blind eye to my problems, and it is a trait very much passed down by my mother's side of the family.

My son, a beautiful and sad little soul, reminds me so much of myself. It breask my heart that I might have done more damage than good.

When my son was sick my mother asked the doctors if he was going to live. (I mean, she actually said, "Doctor, is he going to live?"). I was so angry with her. Why question that sort of thing? Of course he was going to live! I never had a doubt in my mind. Perhaps the denial of realizing just how sick he was is what got me through those dark weeks. I think even if the doctors had said no, he would not life, I would not have believed them. Not any more than I believed the CF docs who told me (and my mom, when she asked them the same question she'd inquired about my son)I might only live to see 18.

It's a fine line, this denial. I'm not sure it is always the wrong choice, though certainly the one that leaves the most uncertainty in its quake.

Wednesday, December 3, 2008

that saved a soul a soul like me

I "won" an award! How exciting! It is so nice to know people are reading and actually enjoy what they read! I think it was so kind for Piper to pick me to pass on this award!

So now, I have to nominate five other people.

My first nominee is Paul. Yes, I know this blog is not up and running, though I hope it will be someday again. But Paul hewlped me learn a lot about myself and CF and is one of the finest writers I know, so I need to give him kudos here. Plus I have to defer that the name for my blog originated in this man's mind

Next is Rhiannon which of course rhymes with Shannon. Rhi has a great style and I get excited each time I see her post.

This is probably cheating, but I have to do it - and no, not so that Piper has to nominate five people all over again, but because there are certain blogs that I read often and really resonate with me, so I guess this is simply a tag back to an awesome blogger.

I am not going to link this next person's blog here simply because I don't know if she is comfortbale with that or not, but I read Melanie's (Droll) blog each time she posts and I think she is a wonderful writer and cuts to the bone with her honesty which I admire.

This last person may probably never know I nominated her, and I don't even know her name, but she stumbled onto my otherblog a while back and I linked back to her and read the most honest blog ever about trying to concieve and stay a fierce proponent of natural birth. I am not going to link her since I don't have her permission, but I promise, it is a good, informative blog.

1. Post the award on your blog
2. Link me for giving it to you
3. Link the originating post nominating you here
4. Pass the award on to 5 more deserving people
5. Post these rules for your recipients

Monday, December 1, 2008

there's nothing as pure as the kindness of an athiest

It is the butt crack of dawn, but I couldn't sleep, so I decided to get the Vest out of the way.

I'm not sure I have much Cf related to tell. I found an old PFT print out that I shared with ym husband. I think he got it. I explained to him about how CF works to efficiently destroy the lungs and showed him my FVC and FEV1 and my 25-75 (75-25?). I explained that while I might see my PFT score jump a bit since swimming, that most likely I've lost about 30% of my lung capacity due to fibrosis...I think he understood that - that almost 1/3 of my lungs aren't working properly and never will again. And I showed him my small airways 33% and how I haven't seen an increase in that in years and so chances are that will only go down too. I think the numbers got to him. The understanding that I'd like to hold on dearly to that 70% of lung function that I've got. That onve it's gonre, it's probably gone for good. Now he understands that when I was at 54% last fall, that was a scary place to be. He seems willing to learn, willing to try to understand.

In other news, I'm being very "green" this C-mas (oh, how i hate those gimmicky catch phrases) making people tote bags and crocheted pouches and I think I might put an energy efficient light bulb in the bags and maybe a homemade chapstick.

So, as I craft, as much for myself as anything I want to take some pics of what I've made - part show offy and part recorder.

The HE-Man bag is for my little brother (he is 27, not that little) made out of a sheet I scored at Goodwill. I don't know who is getting the other bag. The owl purse I made for myself cuz you can't craft withouth making yourself a little sumthin' - the puches...well, I just learned to crochet and they are a little wonky, so I am not sure yet what I will do with them.

I am making this for the baby:

and bangs! The last time i had bangs my husband called me Linda Hamilton for a few months. I hope they look better this time.