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.

Friday, November 28, 2008

and I knew to lay low when he came home drinkin' cuz I knew him like the back of my hand


Another holiday come and gone. We spend Thanksgiving with my husband's family, and it's nice because they are sooo much less pretentious than my family (my dad's side). Don't get me wrong, I love my family, but is nice to eat fried turkey on Thanksgiving paper plates and crack open a beer while watching football (not that I watch football) versus sitting around a formal dining table drinking wine and eating off of china - I like that too - but I do that with my dad's family all the time, so the relaxed atmosphere is nice.

My mom's family was in town too. This includes my uncle who has CF (but he is 12 years post tx). We went out for pizza with my mom and the kids and his new wife on Wed and I had a nice conversation with my uncle. He was good at explaining to my mom about why her reaction to my CF is so effing annoying to me. My mom is the queen of guilt and pity and I find it very frustrating.

I had been talking to my uncle about how I was trying to come into my own with this disease, be more open about it, less ashamed and I made a comment that my mom had had sort of a don't see don't tell attitude about it (mixed with oh-my-poor-baby-I'm-so-sorry for added flavor)...but my uncle told me that he didn't even know he had CF until 3rd grade! And that is because a teacher announced it to the class and betrated him in front of them when he didn't know what it was, then made him get an encyclopedia and read the definition to the class! Hell of all hells! I still feel his pain when I write that. But you can see that denial is well embedded in our family.

He was sort of pushing me getting admitted if I felt I needed to. I don't feel I need to, though I am still waiting on cultures to ome back. I am def. leaning toward IVS I think.

He also have me some great advice about dealing with my husband. He suggested I explain Cf in sort of mechanical terms: this is how the lungs work, this is what CF does to them etc. I though that was a great idea, though I have yet to sit down and talk with the hubster (<--- I can't believe I just wrote 'the hubster'. Ah, well, I'll let it stay).

All-in-all it was a nice holiday and I was glad to have spent the time with those that I did get to see.

This next week will be filled with wrapping up my paper for class and then I get to start C-mas shopping. I enjoy C-mas shopping, especially now that I have a daughter. I can get lost in the Barbie aisle in toys r-us. And I swore I'd never let my kids play with that stuff.

Sunday, November 23, 2008

it's the most wonderful time of the year

I don't care what PFTs or even labs say. Soemthing is amiss here. Camo green is sooo back. yuk.

Friday, November 21, 2008

in your time

For some reason, the comments from this post didn't get emailed to me, so I never realized anyone commented - that, or I have been hitting the bottle waaayyyy too hard at night (possible, but I don't think so).

Anyway, I just thought there were a few good comments on there that I wanted to flesh out here in my writing.

As with my previous post, I have not been feeling too great. I was on orals a few weeks ago. We went to Chicago and when my cousin escorted me to the el platform to visit a friend, I realized that I was really, really winded from walking with her. My friend commented on it when I called to tell him I was on my way. I blamed it on her walking too quickly. But the next day we were going to a Bears game, and I was having a hard time keeping up with my husband. He kept making comments about us missing the first quarter because I was slow. What didn't help was that the baby wanted only me to carry her (and any mom will tell you carrying a toddler in a winter coat is a sucky job) but I could only go a few feet before I had to put her down, cough (with my legs crossed so I wouldn't pee my pants) and then try again. It sucked.

So, as per my above linked post about my husband not"getting" CF these days, on the way home from that trip I commented (apparently more than once - note to self: stop thinking out loud)) that I really wasn't feeling well. What was running through my mind was: why don't I feel well after a round of cipro? Cipro always works. What if I got some nasty bug on the el? I feel crappy. Why was I so out of breath? etc. All I said though was, "I don't feel well." My husband (yes, I love him, really I do, but this was not a shining moment) replied with,"Why don't you stop complaining and do something about it?" I was hurt and angry. What more should I do? I was trying to do something about it! I felt he was insensitive and mean. We got into another "You-don't-get-it" argument.

But here is the thing. Two comments were made in my other post that I have been thinking about. One is that idea that I am coming from denial into an uneasyacceptance of CF. This is so true. I am trying to be proactive, to do the right things to prolong my good health, but I am not at ease with my identitiy as a cystic. I am still fighting it. And much of my battle is inside. My fears and worries have not all surfaced yet becuase in that is a greater admission of acceptance that I am not sure I am ready to share. Which leads to the second comment. The idea that I am reponsible for the image of CF that my husband has. I am the one who put it in his mind in the first place and it is up to me to change it - though I can't expect his vision to change along with mine - he comes at this from a total loss. He knew nothing of CF before me. He has gone along for the ride easily because it has been an easy ride. Somw of my fears and worries have not come to the surface yet. I fear wearing O2 to my kid's school functrions when they get older. I fear my first hospital stay....legitimate fears for a CFers I think, but hard to grasp for someone who is just observing this disease in their rather healthy mate. And I have not shared all of my fears about CF with him...some of them are still deep within me, larger than just the physical manifestations...shame at being imperfect, embarrassment, loathing of pity, afraid of admitting that I'll likely die young.... My husband only knows what I have shared with him and in his POV, why should I worry about those things when they are not part of my present state?

I mentioned to him recently that depending on what my cultures and PFTS showed, I may be in for another round of IVs. I could see on his face saddness, and confusion. I seem just fine to him. He hasn't even noticed me coughing more. He doesn't know this body, he doesn't know CF...all he understands is the present situation. If that means IVs, then he'll be there, helping me along the way. I think maybe that is all I can expect from him right now. He will learn along with me, at his own pace. I'm not sure I can ask for more.

jumpin' jack flash it's a gas gas gas


Ah, yes. The PFT lab. The reasons I hate hospitals, besides being nasty germ receptacles, are all the dumb protocols and dumb people who work in them. That being said, I actually had a decent RT. He was surprized I'd never been in the PFT lab before, but made an interesting comment that their "adult cystics vary so much it is hard to have an exact protocol that they all fit into." Thank you very much, Mr. RT, it's nice ot hear someone realize that. I expected the usual stuff...you don't look like you have CF, you must be very healthy, you're very lucky...etc. etc. - the susal junk medical people say when they find I have CF. HE did ask if I was new to the area, but whatever.

So the skinny is: My PFTs are actually up a point to 73%. I have to say, I am pleased, but had hoped for a larger jump after 2 months of swimming. Either way, that was good news. They did all this other jazz I never had before - where you hold your breath or they give you o2 or check gas exchanges....all that was within normal limits he said - I didn't get print outs on it, all I was really interested was the FEV1 - though all that other stuff was interesting. My small airways are still gasping at 33% though - no improvement there.

So unless my culture shows I am growing some strange bug, I think I am just in for another round of orals - or maybe adding in an inhaled abx. I dunno. I am definitely coughing a lot mroe recently though, and what I was spitting up the other day can be dscried as nothing less than camo colored green....but that seems ot have abated (right after I call the doc, of course), so I have no answer for what is going on except that maybe I just don't respond to cipro as well as I used to. Which will make me sad. Cipro used to me one mean mother, and it seems awfully fast to have worn out its welcome.

And the snow. Perhaps today I will shovel - that will be a lung cleaner-outer if ever there was one.

Wednesday, November 12, 2008

supercalafragilisticexpialadocious

I'm sure many of you have seen this, but if you haven't, I found it amusing.

I am working on a paper for class about CF as a disability and I read an interesting article about Bob Flanagan that someone posted on another webiste I frequent. The article referred to him as "the poster child from hell" which I just got a kick out of, and I think I am going to use that "poster child" aspect as a theme in the paper...but that is about as far as I have gotten.

I was familiar with Flanagan before reading the article, though I hadn't paid him a whole lot of attention despite a voyeurisitc interest in bdsm. Anyway.

Thursday, November 6, 2008

cuz I'm all alone, there's no one here beside me

I've come to the sad realization that my husband does not "get" CF. I truly believe he wants to be supportive, but because he is rather uneducated about Cf, he is failing.

When we met, I did no treatments. I wasn't very interested in Cf. Denial was my middle name. I was probably at a lower lung function than I am now. I was abusing my body in ways I won't mention and just did not have my health very high on my priority list. I think I just mentioned CF in passing once like "oh, I have Cf. It's no big deal. I am not like everyone else who has it." blah blah blah - we already know this story.

But I think that mentality has stuck with him. Last night we argued about me working. I am not against working, though I certianly like NOT working, I just mentioned I was a little scared. That it would be hard to handle treatments and exercise and a full time job and I am afraid of teaching again because I can see in hindsight how often I was sick while I was teaching - I mean schools are GROSS.

My husband told me I was using Cf as a crutch to be lazy, that I was never like this before - that teaching is a cushy job, one that requires little of me and should have no effect on my health. I know in typing this, on a blog read primarily by other CFers, that it is making him sound like a total dick - and he isn't, but he just doesn't know and I don't know how to make him get it.

I was thinking last night that next time I get sick I should just get admitted. that maybe 2 weeks of mom in the hospital would show him where this could be headed. But I don't really want that. I know that day will come soon enough. He doesn't know that that day will come though, and that is the problem.

I feel sort of dejected (rejected). How do you get someone to see something that they just don't/can't see? You can't, obviously.

I am more afraid now than I ever was because right now I truly feel I am alone in this fight.

Wednesday, October 29, 2008

doctor doctor give me the news I got a bad case of lovin' you

Apparently Albuterol is a magic elixer of sorts. I used it before I swam yesterday morning and actually pushed myself pretty hard without any extreme coughing despite the massive quantities of yellow fingerpaint I am able to ejaculate during Vest time. And Vesting seems to be the bane of my existence (which I do with HTS). I didn't use the Albuterol again yesterday since before my morning swim and during my evening Vest I thought I was going to die. I was coughing anc coughing and coughing to the point of gagging and puking and it felt like I wasn't going to get anything more up even though I could feel it rattling around in there and it HURT. So after that I used the Albuterol again and lo and behold...I felt fine. It is my expert opinion that I have a nasty case of bronchitis. But I could not get my doc nor the NP on the horn yesterday; clinic isn't again until the 14th of November and I just feel annoyed. This clinic of mine sucks. I really do like my doc as a person, but I just don't feel they are in this to be proactive, it feels more like a charity thing. I dunno.

Monday, October 27, 2008

how come I can pick my friends but not my nose?

I'm sick. My little cold is now a raging chest infection. Damn it all to hell. I am actually sick enough to call the clinic rather than just have my stepmom write me an rx. I can't breathe and I have filled a solo cup with gunk. LOVELY. I am still going to swim tomorrow. It's weird this one, it's like deep in there....I can't explain it. Very hard to get up. And my head. Don't get me started on my aching head. I didn't go to class tonight either.

Enough complaining. Thanks for listening.

Oh, and. I've been a momma for 9 years today. My boy. Nine.

Friday, October 24, 2008

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.

Sunday, October 19, 2008

with your bitch slap rappin'

My husband and I went out Friday night. We rode our motorcycle despite it being under 40 degrees. It was cold, but man, it sure feels "alive" to be whipping about in that kind of crisp air. People were burning leaves and it smelled so fallish. We met up with my bro-in-law and his new Gf and had a few drinks, played Keno (whatever that is, I didn't get it, and we didn't win) and my BIL's Gf gave me a little treat, which led to wanting treats of a different flavor, and so, with a thud, I fell.

As I was laying in bed later that night, tossing about and wishing for sleep, I was struck by my own stupidity. I'd ingested massive amounts of alcohol on top of having been in a smokey bar for a few hours and all of a sudden I just had this WHATHEFUCK moment.

I know two people who are in the hospital right now, one of which is taking some muy seriosos medications and here I am just heaping abuses on this body like I have forever here. I realize that part of my epiphany stemmed from dopamine depletion, but nevertheless, it was an eye opener. Well not an eye opener, I already have my eyes open. What I choose to do these days is just pure bad judgement, but for some reason, I just needed a reminder. I felt like I was really creating bad karma for my own health.

So I spent much of the rest of the night praying for my friends and for myself.

I pray a lot. I believe in God, though I am not really sure in what sense. I don't consider myself Christain really, but I do believe in prayer, and so I prayed.

I wish I could say with utter certainty, "Well, I'll never do that again!" But I know better. I think I am a strong person. I have good follow-through, I am responsible and dependable, but every now and then I just want to run this body through the ringer. I just haven't gotten my entire FUCKOFF out to Cf yet. And of course it's not all CF. I know it started that way. But I also know once you get the taste....

Ah, well. We move on for now. I swam hard today, a cleansing of sorts, chasing out the grime. Proof to myself that I'm still strong, I'm still here. I'll get it together yet.

Monday, October 13, 2008

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

Saturday, October 4, 2008

standing in the shower thinking

I've tried to avoid it, but this keep s popping up on blogs I read. So, I'll play along. Here are 6 quirky facts about me:

1) I am a pack rat. I keep all sorts of odd things for art projects that never seem to get done: a wood table top, He-Man sheets (these will get used!), old wine glasses, etc. This drives my husband insane. He throws ev erythig away (even perfectly good things that could be used for a future art project!)

2) My dad used to lie about my age all the time to get me into stuff for free since I was so tiny and always looked youger than I was, well at least until I turned about 29. Now I apparently look like an old hag and no one ever doubts my age. Anyway, the last time he did it I was 20 and we were in France going to the Louvre. My step sister was also 20 and my brothers were 16. My dad was trying to say we were all under 16 to get us in for free. The woman at the gate would not let my step-sister and (little) brother in as under 16 but I waltzed right through. She and my dad ended up arguing - her in French and he in English which I, the lone French speaker in our group, had to mitigate. We all got in for free.

3) I won the presidential physical fitness award several times through my school years. Me, the little Cf girl! :)

4) I gave birth to my daughter 13 minutes after we arrived at the hospital. I would have stayed home and had her in the shower if it were up to me, but my husband literally dragged me to the car. Want a natural birth? Don't go to the hospital and if you do, wait until the last possible minute! :)

5) My friend Laura and I wrote a 100+ [age novel in the 5th grade called "Wake Me if I'm Dreaming" I still have it.

6)I had a boyfriend in collge who idolized Perry Farrell of Jane's Addiction. There is a little cult flick Perry made called "Gift" and in it, he wears a dress adn these long crpcheted gloves. My boyfriend used to wear one of my old spandex dresses over his army pants and long home-made crocheted gloves. Boys wearing dresses in Middle America doesn't go over all that well with the masses. But it was fun.

If you've read this, you're tagged. 6 quirky things. go.

Friday, October 3, 2008

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?

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.

EDITED TO ADD
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.

Sunday, August 31, 2008

Day in the LIfe

August 31, 2008

Wake up and do the morning routine: nebs, vest, computer time







The kids are off to Grandma and BopBop's for the day. Mommy is both sad and excited to see them go.



G is getting frisky now that we're alone







We take a shower (ooh la la), and I fix my hair for motorcycle riding.



G suggests we powder our thighs and butt so we don't get saddle sores (I don't think it was necesaary, but i like the bottle)



Breakfast first



This is why I think I am fat



On the road again



We ride into Amish country - I thought i had the horse and buggy behind me, but to no avail. Instead, my sunglasses



Visit Miss Lo, bike extraordinnaire, and give her a ride



She took our pic together lest this become a day in G's life due to a one man camera show



Then we head over to the smokiest bar in america to have a drink with my father-in-law. I swear I had tar coming out of my lungs at treatment time from this place. We didn't stay long.



We came home and took a snooze



Then headed over to my dad's to pick up the kids and have dinner



My whole family is there: granmda, cousins, bro from NYC and sister-in-lsw, aunts, unles, mom, dad, step-mom. It was nice



My boy helps his grandma pick some peaches from the peach tree before we leave



Nigh Nigh for babies

I take shot of my tired self



and end my day how it started, nebs, vest, computer (and a drink, afterall, tomorrow is a holiday!)

we never even said a word we just walked out and got on that bike

I woke up with a tickle in my lungs - that same feeling you get when you smoke realy good pot and it is literally cootchie-cooing your lungs. Yeah, I know I shouldn't know what that feels like, but it was honestly the only analogy that would work for what I felt this morning. Sorry. For the record, my smot poking days are over. Anyway, I skipped my treatmetns last night and so that's how I felt when I awoke. You should see the contents of my spit cup - yum!

I had more to say, but it eludes me this mornng. MY husband and I are going on a motorcycle ride today. There is actually a huge run that supports the MDA people this weekend. We have it each year and there are THOUSANDS on motorcycles. We're not going though as the last thing i want to do is idle on a 90 degree day amidst a bunch of other bikes. I think we should go to the beach or something equally romantic. We'll see. I found it is actually a little hard to breathe ont he highway once the bike goes over like 60mph. I had to position myself to get the wind out of my face so I could get a deep breathe. I would assume anyone would feel this way, but I don't know.

Maybe I will do a day-in-the-life today. We'll see.

Tuesday, August 26, 2008

I don't get angry when my mom smokes pot, hits the bottle then goes right to the rock

Yes, I'm drinking. Fuck yes, I am drinking. It's been that kind of day. I want to bitch about the whole damn day, most of all how my lungs actually hurt from this cold, even though it isn't actually in my lungs yet but hovering about causing trouble in my sinuses - I guess maybe it is my bronchial tubes that hurt from dripping snot...something effing hurts. But, I am going to stick to my original agenda.

Classes started yesterday. About 99% of the grad classes I have taken have been in the same room, on the third floor of the building that houses the English department.

For whatever the reason, elevators are eschewed on college campuses. I've been to three different colleges, so I can attest this to be pretty true across the country. Not being one to stand out, I take the stairs like everyone else (except the very old, the very fat, the wheelchair ridden and, well, probably some of the other lungers).

When I started my master's in 2005, which I think was the beginning of the decline that led me to the place that I am now with my Cf (since about 1996, I hadn't been doing much besides smoking pot and hanging out in bars), I had a very hard time with the stairs. It wasn't that I couldn't make it up them, but only that I was left at the top - sometimes even at the second floor, in the midst of a serious coughing fit. Generally, once I made it to the top, I could dip into the bathroom, cough cough cough and get to class with no one the wiser....that is, of course, unless I got caught going up the stairs with someone from class at the same time. This was a horrid thing and one I often tried to avoid. So I developed a way of breathing that would help me to not have a coughing fit (in through the nose, out through the mouth, blowing softly and doing this very slowly)or at least hold one off until I got into the safety of the bathroom.

The lovely part of this story is that since I have started doing the Vest and other treatments, I no long have coughing fits while I do the stairs. It is an amazing thing. I can talk to people while we walk up and not be afriad at all. I do get a bit short of breath at the top, but I have noticed so do a lot of people. So chalk one up for compliance.

The second item on my mind deals with feet. Or the lack thereof.

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

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

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

Monday, August 25, 2008

the other half found me stumbling around all drunk on burgundy wine


I've got a cold. bah. It figures: classes starts tonight, I just finished a dose of abx, and we have a ton of upcoming plans....so of course, I should get sick.

My husband and I bought a motorcycle over the weekend. He had one when we first met but was in an accident on my 24th birthday which resulted in a broken hand for him and a totaled motorcycle. He took the insurance money from the bike and bought a boat with it (men and their toys). That boat was sold after being laid off of work for 9 months in 2003/4...but we've always talked about getting another bike. My brother-in-law rides - pretty seriously, as in takes long trips on the motorcycle - and we've been a bit green with envy. So we got one. I admit, I am actually a scardey pants about it. I say a little prayer before we leave and one of thanks when (if) I return home safely, but at the same time, having a motorcycle is fitting with my life's theme: do things that will probably kill me and then be grateful when they don't.

I guess I look at it sort of caustically. I am supposed to die from CF - wasn't that the idea when my genes strung themselves together? My ending was predetermined from conception, so perhaps I play fate a bit more than I should. Of course I've toned that down with the advent of my children, but there is still a part of me - the biker babe part- that likes to toy with the universe.

I can't say that this lifestyle I've chosen of spitting at CF has always been beneficial, certainly I've done damage along the way, but I also think how different I would be had I treated Cf differently all those years...and the bigger question: would my health really be any different at all or would I still have PFTS hovering at 70 and be lamenting my untoned belly?

Obviously I will never know the answers as I can't know if in fact Cf will win in the end or if some other unexpected twist will close out my chapters. I do know this: if I die from CF, I do not want it written that I "lost a long battle with CF." or anything remotely like that - in fact, I think I prefer not to give Cf its day in the spotlight at all. Instead, I think it should just say something like, "Shannon died as she lived - gone down in a blaze of light," or something equally deathly romantic.

Meanwhile though, while I'd like to stick around here on earth I will continue to say my prayers and give my thanks, sending my thoughts out to which ever diety is willing to bend an ear my way.

Friday, August 22, 2008

make new friends but keep the old one is silver and the other gold

Went to see the "Sex and the City" movie (don't bother. works in 30 minute segments, not so much as a 2.5 hour movie) with one of my oldest pals last night. Lo and I have been friends for 20 years this year, and for most of those years we have been thick as thieves. In fact we often joke that we're living the dream life that all little girls have wiith their best friends...we'll get married, live next door, our kids will be friends, etc. It's pretty much true for us. Of course we've meandered on our paths, occasionally straying a bit farther from one anothers' lives, me to NM, her to AZ, but never far in our hearts.

Anyway, Lo has always known about CF - mainly because when I was a kid my mom dutifully went to all my new friends' moms to explain Cf and enzymes, etc. She also did this with all my teachers up to the 7th grade when I finally begged her to leave it be (and my 6th grade teacher kindly took it upon herself one day when I was out of class due to a clinic appointment to infom the entire 6th grade class about Cf, thank you Mrs. B). But we never really talked about CF, Lo and I. I mean there were occasional things. In high school my cough used to make her laugh as she alwasy said it sounded like an old truck trying to start - or the time i had to buy her cigarettes because she didn't have her ID but had a coughing fit as I laid the carton down to be purchased (which we both found hilarious and which only furthered my fit). But I always kept Cf close and quiet, even with my best of friends.

Lately though, perhaps in the last year or so, as I have come into beginning to accept my Cf self and I have begun to take my treatments seriously, I have also become more open with Lo about CF. She started reading Cfhusband and FOP and even bought one of Q's Denial bags. She began asking questions and I began offereing information. I have never spoken this freely about CF with anyone in my life (other Cfers withstanding), ever.

Last night Lo said to me that she was so grateful that I was sharing this with her and allowing her into my life this way. She said that it was if she'd "found the missing puzzle piece" to who I am. I think I feel the same. As I begin to fit this huge chunk of myself back in place rather than continuing to hold it at arms length, I am finding that I am more at ease with myself. I feel better put together.

It is amazing what a toll it takes to hide a chronic illness. It wasn't that it was all that hard to hide, but it certainly wasn't overly easy either, being sly with enzymes and having such a bad case of asthma, bronchitis, sinus infections, and allergies all these years. It almost seems ridiculous as I type that list of ailments that I ever worried about beign outed about Cf. I think people were more worried about why I didn't ever "see a doctor for that cough."

I don't want to misrepresent here. I still don't use Cf as my conversation pieces yet. But Lo has aleviated some of my fears by being so accepting, so curious as to this part of who I am.

As she said last night, "I don't feel sorry for you. This is just the hand you've drawn. We all have our shit, I'm just glad I get to be a part of yours."

Good friend, that one.

Thursday, August 21, 2008

all your beauty will be stolen by a young girl in the night

This real-life stalking thing is giving me a headache. I know I am being vague right now but until I have a handle on what is going on, I am not ready to share too much just yet here on the internets.

Instead, I would like to talk about my big ole belleh. I decided it probably wasn't very compassionate to talk about being a fat ass in Cf chat, not when so many people have trouble maintaining a healthy weight, but here on La Vie I can talk about it.

I seriously have like an inner tube around my middle - which is clearly from poor eating habits...it's just so annoying to me that at this time last year I wore a size 0...103 lbs, granted I was too thin, I was at my lowest PFTs ever - but man, my belly was as flat as could be. SO nice. Now, a mere 10 months later I am close to 130lbs with a saggy bloated belly. bah. I now wear size 5 or 7. Holy freaking hell. (and before someone says, Oh! I would love to be a size 7, yaddi da, please remember I am talking overall form, the fact that I have been a 3 most of my life, and I am only 5'2")

My husband keeps saying he doesn't mind, that it just means I am healthy - blah blah. Fine and dandy, but I am not healthy - we all know belly weight is the most unhealthy kind of weight there is, plus my belly is constantly bloated. I look 5 months pregnant all the time. It literally hangs over my waist (ok, maybe it doesn't hang over, but it is clearly there ready to drop with the next Big Mac).

So I can't help but wonder why I gained almost 30 pounds in one year? Doesn't that seem amiss? And yet I am always bloated and gassy. Is it hormonal? Is it age? Is it enzymes? Bad eating habits? Not enough exercize? Two kids? Thyroid? A combination of all of the above?

Perhaps I should just get disciplined with diet and working out. Because I know the bag of cracker nuts and coca cola I had for breakfast were upwards of 1000 calories I didn't need.

Of course, don't forget old vanity peeking in. I want my flat belly. I don't want this extra 20 pounds and fat chicken neck that comes with it. Perhaps I am a bit sensitive to all this as I've now entered into my thirties....I don't know. All I know is my body image has been none too good lately and it is brining me down.

I guess instead of complaining I should probably do something, eh? Easier said than done, obvisouly.

Wednesday, August 20, 2008

not by the hair of my chinny chin chin

Too many creepy internet things have been happening lately - I can't help but wonder if they are not somehow in relation to the whole Gina-troll thing. I defended (albeit through anonymous postings, though signed as wanderlost) Q on that site, which in turn was linked to the Cf2 site which suddenly my blogs have gone from like maybe 10 views a day to upward of 50.... CREEPY. If you're reading this, please, post - or if you know me, email me and tell me- let me know who you are. I can't in good faith post stuff about my kids if a bunch of trolls are nosing around here.

Not to mention a few other wierd coincidences that happened out here IRL around this same time that are kinda bugging me out, which I will post about as soon as my internet sleuth lets me know things are cleared up. I have always trusted the people I have met online - I still do, though I have to admit I am more weary now - weary not just on trust - I feel that for the most part the people I interact with are on the up and up and because of they kind of person I am I am going to choose to continue to believe in each and everyone of them until proven differently, but after seeing the unkind things people have been capable of saying and thinking, it's hard to allow my life to be scrutinized in the public domain. I like blogging and I want to continue to do so...and honestly, despite those around me who say I am a fool, I don't mind being naive about the goodness of humanity. I just don't want to be proven wrong (again).

Saturday, August 16, 2008

now the weak must get strong they say oh! what a tribulation

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

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

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

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

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

Wednesday, August 13, 2008

one pill makes you larger and one pill makes you small

I've got a monstrous headache that, from experience, I think can only mean one thing: I am allergic to one of these antibiotics. I'm still very very itchy from what I thought was the sunburn, but I am now beginning to wonder...? The last two antibiotics I was on I turned out to be allergic to, though the hives came the day after the last dose. Friday morning I pop my last pill, so we shall see. Hives are not something I want to deal with, nor is this increased sensitivity to antibiotics.

Tuesday, August 12, 2008

Wish I Was Ocean Size



This is what you wind up looking like should you a) not apply adequate sunscreen or b) forget to sunscreen your legs and feet at seaworld when on antibiotics. Apparently those warning labels are on there for a reason. Though, in defense, I would have never apllied sunscreen to the tips of my ears or between my toes, and those spots were just as agitated as my legs and feet.



My kids and my li'l bro.

We had a good time, but it is good to be back, not to mention the plane ride home was suicide inducing.

Living by the ocean has always been my dream and everytime I visit an oceanic place I remember why. Despite the power and awe the ocean provides, I feel sooo good when I am in it; I need to remember that feeling sometimes.

Sunday, August 10, 2008

When you don't have words, you steal someone else's

God's Grief

Great parent
who must have started out
with such high hopes.
What magnitude of suffering,
the immensity of guilt,
the staggering despair.
A mind the size of the sun,
burning with longing,
a heart huge as a gray whale
breaching, streaming
seawater against the pale sky.
Man god or beast god,
god that breathes in every pleated leaf,
throat sac of frog, pinfeather and shaft--
god of plutonium and penicillin, drunk
sleeping on the subway grate,
god of Joan of Arc, god of Crazy Horse,
Lady Day, bringing us to our knees,
god of Houdini with hands
like a river, of Einstein, regret
running thick in his veins,
god of Stalin, god of Somoza,
god of the long march,
the Trail of Tears,
the trains,
god of Allende and god of Tookie,
the strawberry picker, fire in his back,
god of midnight, god of winter,
god of rouged children sold
with a week's lodging
and airfare to Thailand,
god in trouble, god at the end of his rope--
sleepless, helpless--
desperate god, frantic god, whale heart
lost in the shallows, beached
on the sand, parched, blistered, crushed
by gravity's massive weight.

- Ellen Bass

Saturday, August 9, 2008

sun is shining weather is sweet

I am pretty itchy and stingy from the burn I allowed myself to get at SeaWOrld via too much sun, abx, and not enough sunblock. The baby also had some sort of heat exhaustion/virus/ear infection going on - I have not yet determined which. Nevertheless I found time for a treatment, shopping, the beach, and a nice dinner out. I covered my head and ears with a bandana, got some huge sunglasses, and some zinc sunscreen, so that helped. But I look ridiculous in the pictures, which I will post when I get home.

More beach today. Which means I must lather myself in sunblock and put on my incognito garb.

Thursday, August 7, 2008

when I'm a walkin' I strut my stuff

bactrim+levaquin+too much sun at seaworld = one uncomfortable woman.

We are having fun here in CA. My son surfed today and appparently caught right on and rode a few waves in to shore. I however, opted for some stupid reason not to use sunscreen on my legs when we went to sea world and now have a horrible allergic sun reaction from my meds. What a genius. I need to do some treatments as I haven't done them since I got here (which means I have missed two treatments), and I am starting to feel it.

San Diego is nice though. Too bad I am afraid of the ocean. That isn't to mean I don't love it, but all I can think about is getting attacked by some creature. Nevertheless, I rode a few waves myself yesterday. Tomorrow, more beach, more good food, more drink. Not too shabby.

Monday, August 4, 2008

Just like Heaven

Well. huh. Two posts in one day.

Spoke with the Cf council lady. I am going to send out a letter with my email and see if I can't start an email chain for adults with Cf in our area. She said she tried to do it with the parents and got no response. figures.

She also said that the local United Way told her, "It would be a lot easier for us to give you money if children were dying from your disease." Ni-ice. Upward battle, no?

I did appreciate that she said when she meets new parents she does encourage them not to handicap their children with Cf and to treat them as normally as possible - and I offered to help talk to new parents. I think Cf will get you soon enough, why let your paretns enable it? Probably not what she wants me to say though. :)

Anyway, I am not feeling overly excited about the conversation. She seemed nice enough, but clearly, her office is dedicated mainly to fundraising, and from what I hear, fundraising needs sick children, not 31 year old moms.

And you know what else. Just one last thing and then I am going to take a nap, as i am sure my mood is a bit evident today. When you listen to the White Sox on the radio (670 The Score, thanks Huz) they do these little plugs where Waste Management donates to the CFF, you know, to help find the CURE. Does anyone know of a disease that has been cured? Not eradictaed due to vaccination, but rather cured. As in you have it, now you don't? How misleading is this. It annoys me to no end. The CURE. The Cure is a band....show me show me show me how you do that trick the one that makes me scream she said the one that makes me laugh she said and threw her arms around my head, show me how you do it and I promise that I promose that I'll run away with you....not a reasonable ending for CF. sorry.

Riders on the Storm

I called my clinic this morning about the labs I had drawn three weeks ago and of course they haven't seen them. The girl that answered the phone was a real dumbass too. This is why I hate the whole thing. You can't just get your doc on the phone, you have to jump through rings of fire just to leave a fricking message, and honestly, receptionists will have their own level of hell, just you wait and see. In fact, my doc isn't even in that office - it's just a satelite office that he frequents twice a month I guess when his bleeding heart strings make him take on the lungers clinic. That's mean, I gues he is a nice guy - the real problem is that it is a specialty clinic, which sees all kinds of kids (oh yes, and a few lone adults) with sad little illnesses and it is run by a NP who has to do all the work for the whole thing.

I asked if I could just email the NP instead of trying to play phone tag. I know other people in other clinics are on email with their docs, but the girl on the phone acted like I was asking about coming in for assisted sucide. EMAILOMFGNOWENEVERLETPATIENTSEMAILUSTHATWOULDBELIKETHESINOFALLSINS. stoopid bitch. I might need to switch clinics, this is too much for me.

And then, the lady from the CF chapter still hasn't called back. I think she tried once but then never responsded to my second call. Here is the thing, that is the kind of shit I cannot put up with. So I left her a salty little message as well. I know what I want to do. I definitely want to start an adult email chain to find out if other people are as frustrated with the clinic as I am. Before networking online, I never knew how other clincs were run, but now that I have some inkling, I know enough to know that mine is a disorganized germ infested maze of annoyance.

I am not an outright go-getter, I know this. I prefer to sit back and let other people run stuff - I don't care for the headaches; but I have no problem taking over when I learn that, in fact, things are being run by monkeys, and I think this may have to be the case here. That or I switch clinics and start driving 2.5 hours everytime i need to be seen. Which will it be? First, I try to man the ship. If we go down, I bail out and head for dry land.

Looks like we're going to have a killer storm here in a minute. sweet.

Sunday, August 3, 2008

calling out around the world

I was outed yesterday, by my own husband. Can you say AWKWARD?

We went up to a friend of mine's lake house, and took the kids out on the boat. We moored to go for a swim and I was trying to convince the huz that he should be the one to go in the water with the baby, as I am usually the one who does it. He replied with, "But you need the exercise." Our friends started laughing and saying that was "cold" and just jesting with G for what he'd said. I knew what he meant, but they clearly thought he meant it as if he were suggesting I was in bad shape (never mind that I am). So he said, "No, for her CF." Which of course they don't know about and quickly said, "Her what?" But, thank goodness, the manchild called our attention out toward the lake and the situation was diffussed - not withstanding the hairy eyeball I gave my husband.

I don't know how to better handle these situations. I find them terribly uncomfortable. The last thing I wanted to do was explain Cf on a boat in the middle of a fun, sunny day. I wish I could be comfortable enough in my own skin to just be matter-of-fact about it all, but I am not.

I've decided it's pretty pertinant that I go on abx before CA, especially if I am not going to take my vest. I don't want to, but only because I want to drink or imbibe in whatever other treats might come my way, which doesn't make sense, but hey - none of this shit makes any sense, does it?