Friday, February 27, 2009

just call me shameless

My CF Statistics

Because I am a shameless copycat and because it gives me something to write about, here you go!

I'm Shannon.

I will be 32 in July.

I have two children ages 9 and 2.5

I was diagnosed at 6 weeks with failure to thrive. Apparently I spent most of my first six weeks screaming and very angry, due mainly to starvation. I developed a fissure by one eye from lack of some nutrient. My great grandfather was visiting from South Africa and as soon as he saw me he said, "something is not right with that baby." My paretns REALLY did not want to see things. My mother says I had to have a blood transfusion and afterwards she did not even reocgnize me because I was all pink and glowy and healthy looking rather than gaunt and pale.

I took enzymes in applesauce, but I think by age three I was swallowing my own pills.

After kindergarten my mother no longer gave the school nurse my meds, instead she just put them in my lunch box. We learned early on involving the school in med taking was pointless - I remember in daycare arguing with the daycare teacher that yes, I had to have more enzymes to eat again, it did not matter that I had taken some an hour talking to a brick wall.

My parents did CPT on me until I was about 8 at which point I was strong enough to fight them off. I HATED it. They would have to chase me down, sometimes there was some spanking involved, other times some bribing.

At age 9 my dad put me on a competitive swim team (USS swimming, like the kind of team Olympians usually start on, and in fact I competed against Lindsay Benko who won a gold in 2004 - she kicked my butt though.) His reasoning was that the exercize would shake up the mucous and clean me out and there did not have to be anymore wrestling matches at home. It worked very well.

On off swimming days, my dad often made us go on what he called "ranger runs" - all under the pretense of "keeping Shannon's lungs clear." If it was raining, we did 500jumping jacks in the basement. He also gave is "karate lessons" and made my brothers and sister and I spar with one another. I HATED all of this. Often when we ran I would try to just sit down and refure to run, in which case my dad would drag me or swat me in the back of the legs with a switch.

Despite all this, I won the Presidential Physical Fitness Award several times in school - I was the only kid who could climb the ropes to the rafters! I played basketball (I sucked, I was so little!) and volleyball, I ran track (but quit) and I also was the captain of the swim team in high school and went to state as an alternate on a relay (which means I did not swim, but was chosen to be a replacement if someone should not be able to).

I never went to Cf cmap. I would have rather DIED than gone to Cf camp. Looking back now I don't think it would have been such a bad thing for me, but I really tried to hide all things Cf related.

I have never been hospitalized for CF.

I had my first PICC and first IVs last February.

This is not to say I would not have benefitted from IVs years earlier, but that's just how the cookie rolled.

I am scheduled to see an ENT on Monday for the first time despite a lifetime of sinus torubles. I have never had polyps though.

My lowest recorded PFTS were 46% when I was about 11, the highest 96% at age 15. For years I thought I hovered in the 70s but it turns out that until recently the last time I saw the 70s was when I was 18. I was in the 50s-60s all through my twenties. I am now back into the 70s and plan on staying there as long as I can.

I am now swimming again after a 14 year hiatus. I swim 1/2 mile 3x a week. I think I should do more though and am looking into this "Couch Potato to 5k" thing I have heard about.

I pee my pants when I cough or laugh, so I hate exercizing in front of poeple like at a gym - because you have the coughing thing, and then you have the grab your crotch so you don't pee your pants thing. I blame this on CF, genetics, and 2 vaginal births.

I had my genetic typing done when I was pregnant with my son. I signed up to do a study on gestational diabetes and Cf women. I am a horrible patient and I did not finish the study (sorry O CF world). I found out I am df508 and s549n.

I do not have CFRD, not yet anyway. I did not have gestational diabetes either.

I was underweight as a child until puberty when I plumped right up. From age 14-27 I weighed between 100-110, at 27 I plumped up to the 118-120 region. I am now at 133ish and not very happy with it. It has been a real battle to have not had to worry about what I ate or wrestle with body image for som any years and to now have this sagging belly and cellulite. I am working on both toning up and accepting my new figure, but it has been very hard for me.

My maternal uncle has CF. My maternal grandparents lost their first child to CF as well in 1948 at 8 weeks old. No one else we know of in our family has CF though there are a few suspicious deaths of infants on my paternal grandma's side though she denies it could have been CF. I think she is positive that the Cf genes all came form my grandfathers side. None of my cousins or siblings have been tested to see if they are carriers.

When my son was born he got sick with meningitis at 10 days old. I had to repeatedly convince his doctors I had CF (they were not sure what was wrong with him at first and while Cf did not seem likley, it was in interesting pice of info on my end). They kept telling me I may have been misdiagnosed, etc. Finally I spouted off my mutations and they shut up.

Cf has not kept me from living a "normal" life at all and for that I am thankful. I am much more prepared to handle CF at age 31 than I was at 21 so I am glad I got the chance to grow a bit before it really started showing itself and that I was wise enough when it did to start taking care of myself and not continuing to rely on good luck as I was able to regain almost 20% of my lung function and I now remember again what it feels like to feel pretty good.

I get afraid for my kids, for leaving them without a mom, and I think I can say having kids was a pretty selfish choice, but they are my heaven and earth and the reason I strap into the vest each night and swim in the mornings.

your turn!

Thursday, February 26, 2009

I've got a picture in my mind

The Rules:
Answer each of the questions below using the Flickr Search engine.
Choose a photo from the first three pages.
Copy the URL of your favorite photo into this site:
Save mosaic to some form of photo hosting thing and share with the world.

1. First Name
2. Favorite Food
3. Hometown
4. Favorite Color
5. Celebrity Crush
6. Favorite Drink
7. Dream Vacation
8. Favorite Dessert
9. What I Want To Be When I Grow Up
10. What I Love Most In The World
11. One Word That Describes Me
12. My LiveJournal Name
(if you don't have LJ, use your blog name or your nick name or whatevah)

1. Shannon, 2. fabuki!, 3. On a Cold Snowy Night, 4. Seminole State Park, Georgia, 5. Vintage Celebrity Portrait: Marlon Brando, 6. Smokin, 7. Our private Royal Waterfall 'Anamkok', 8. Papaya sorbet, 9. just call me Rebbe Fubuki (aboutme), 10. DSC01786 (2), 11. Introvert/Extrovert or I've got my eye on you, 12. Street art in Barcelona, Spain

I'm not in to tagging, so tag yo' own self, but leave me a comment if you do this so's I can see it.

Tuesday, February 24, 2009

cuz its all in my head and i think about it over and over again

As I predicted, I got my CT report in the mail before el doctor has called. It is so annoying. I am trying to read this thing and while I get the basics, most the medical jargon is beyond me - wikipedia can only do so much.

cylindrical and saccular bronchiectasis - I don't really get this, but I understand bronchectasis
lung abnormalities greatest in upper lobes, minimal disease in lower lobes (this has been said on my xrays for as long as I can remember)

here is one that I don't understand: "there are some generous sized bronchiolar artery collaterals noted in the mediastinum posterior to the distal trachea"

on to the sinuses. Sinusitis with a deviated septum and no polyps. I've never had polyps so this is not a big surprize either. Basically what I think the guys is saying is I have got some fucking INFECTED ass sinuses (not sure, but that is what it sounds like - everything is "opacicity this and opacicity that.")

So any MDs out there wanna help me dissect this further, be my guest.

As for the diviated septum. I'm not sure about that - some say surgery. I am not too into that idea but if it would reduce sinus infections, I might be talked into it. I am thinking we are looking at IVs at least.

You guys that read this boring blog are the best. I promise once my head stops hurting to write something mor exciting than wah wah wah Cf sucks - though, who could ask for a better audience??

Monday, February 23, 2009

no thank you please it only makes me sneeze and then it makes it hard to find the door

So now 2 weeks later I think I finally have some relief from my headache. It is not gone, but it is better (KNOCK ON WOOD MO' FO') - I honestly think it might have been the azithromycin. I stopped taking it and the headache went away and then I took it again and it was back and then I stopped again. The only reason I think this is because for years I used to complain that Augmentin gave me a headache and everyone blew me off - and then the last time I took it - wah lah, horrid hives all over - so I always figured the headache was like a milder allergic reaction. The headache I have had these past 2 weeks was not the same kind of headache, but I can't completely disregard the corrleation.

I had my CT on Thursday though - have not heard back about it of course, but they did my sinuses and chest (chest just for a baseline as I have not had an xray in like 5 years and never a CT). I had a mild allergic reaction to the contrast dye - I could not stop sneezing. I sneezed like 50 times in a row and freaked out the techs! But i was fine after that.

All of a sudden it seems like my body is just rebelling against these meds, I swear. I could tolerate everything before and now it seems so many things don't sit well with me.

Anyway, it is nice to be feeling a bit better at long last and I hope this headache stays the fuck away.

Any bets on how long it takes my clinic to get back to me on the CT stuff? My bet says I get the report at my house before they call me.

Wednesday, February 18, 2009

have you seen the little piggies rolling in the dirt?

I have CT tomorrow morning of my sinuses and my chest. I have never had a CT of either, so it should be enlightening (or scary). I have had chest xrays - though prolly not one since like 2004, so we shall see.

I have not yet taken a pain killer today and so far, so good. I have sort of a mild thumping in the head, but as of yet it is not intolerable. Knock on wood. I feel like a fricking drug addict and who wants to be a drug addict if it is not for fun? But I've been eyeing my pain killers warily thinking I only have so many left to last me how ever many days...yikes!

While I don't want anything to be "wrong" with me, it would be nice for this CT to at leat validate where my pain is coming from because trying to get adequate pain killers/control has been like pulling teeth. I don't understand what is with these Hippocratic oath people (is that what it is?) because leaving me with shoddy pain killers is DOING ME HARM. I actually woke yesterday morning with this sense of dread of facing another day of pain. Oy.

Also, just a TMI FYI , I just hacked something BROWN from my sinuses and into my spit cup while nebbing. WTF. acronym city here. but BROWN? like tar? maybe it was dried blood? yuk.

AND, I am going on Colistin, not TOBI. But has Foudation Care called me yet? no. Usally those people are like Jehovah's witnesses on the refills so you think they'd be all in a lurch to get me my way expensive drogas. Who can say.

One finaly word. I sometimes can be satirically self-depricating, but I am only usually half serious. So I appreciate you all commenting on the fact that I am not a fat pig. I don't reallythink I am a fat pig, I am just unhappy with my new rolls of pudge, but I overexaggerated a bit on the pig part. I appreciate that you all cared enough to tell me otherwise though. thanks.

Monday, February 16, 2009

it's outrageous and insane them crazy prices in Port-o-Spain

Some pictures, because everyone loves pictures, right? These were old picutres on my brother's (badass) camera that he took 4eva' to send me.

Just some images of those I love.

First, I just wanted to show me in June and me in December so that the progression of my fatness would be evident (as it is to me).

June - thin

December - la gorda

my manchild, in constant need of a haircut (which is a constant battle - I don't mind long hair, but I do like neat hair - not to imply I think the child has long hair, just fro hair)

my baby - she doesn't even look like this anymore

my dad, stepmom, and bros

my son and his Christmas dirt bike

My bro and his niece

if you look like a fat pig you should act like one, too

This is my CA bro and his fiancee (he is the surfer)

This is my NYC bro and his wife (he is the artiste)

There you have it. Ma famile. Ther are no pics of my mom because she usually does not take good ones and would be mad if I posted an ugly one. I don't know why my husband or step son did not make this cut, but oh well - oh, actually they are up in the dirt bike pic.

Saturday, February 14, 2009

corn bread and ice tea's took the place of pills and 90 proof

Clinic yesterday resulted in noe much progress with regards to my aching head problem. I don't think I am too cool about my pain being dismissed.

PFTS were 70, down a tad form last time, but I can't complain.
Sats were 97, so clearly not a problem there

Doc said there was some edema in my nose, something i never heard before, but might explain some of my pain.

All he really told me to do is take more advil.

Yeah, thanks pal, cuz the advil is working like a real charm.

I think MOnday I am going to request a CAT scan - I have not had an x-ray in years so this won't be a bad idea overlall to get a chest/sinus scan.

I am going to try TOBI again though. I mentioned to the doc that I just can't keep using Cipro and levaquin over and over, I can feel it in my joints, so he thought using the zithro and TOBI might be the next logical step. I'll try it.

Meanwhile, I continue to be in a lot of pain and i have a whole new outlook on pian and pain management and how awful it is not to have yor pain taken serioulsy, which I don't think I had.


this, my friends, has given me the utmost validity in self-medicating.

Thursday, February 12, 2009

wishing you all the breast

Not at all Cf related but very dear to my heart.,8599,1878917,00.html?cnn=yes

Not that you aksed, but yes, I would nurse someone else's baby over and over again. I've been nursing for 28 months and if I could, I would donate my milk forever to non-profit milk banks (but CF (meds more than CF) means I can't).

ps. if you can't hear the videos I am posting, scroll down to the bottom of the page and pause the music player.

Tuesday, February 10, 2009

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

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

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

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

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

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

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

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

Thursday, February 5, 2009

make my funk a P funk, I wants to get funked up

There are days when I just cannot get a grasp on this disease.

Now, granted, I am also the girl who sometimes looks at human beings and thinks how freaking wierd we are...eyes, mouths, the things we do and say...I mean life itself is just this huge trippy alien that is outside the realm of even trying to understand -

but CF. What the hell is this? and WHY?

I know there are no answers here. It's like thinking about dying of CF. I can't think about that in any way that is any more real to me than pondering the cosmos or how an ant can carry a potato chip for miles on end. But I feel like I'm sort of just waiting. Waiting for the minute when it is all going to seem real to me. I don't know when that will be. What moment will I stop and think, "but yes, of course, ever did I miss you all these years?" Because I haven't missed it. It just IS.

This is so rambley. I just get caught up in the whole thing when I think of how we are all just spiraling around in this maze looking for the way out, some closer to the exit than others...

I don't know what I'm saying.

I guess Cf became real to me as I started to see it through the eyes of a mother. As a mother I can empathaize and worry and want to fight CF. As myself, I just want to sit back and turn off the lights and let whatever will be be.

Surely there has to be some answer for this fate. I'm just waiting for it to come whirling out of the sky on a spaceship with little green pseudomona men.

Tuesday, February 3, 2009

The Wild Iris

God, CF sucks.

Whenever my eloquent words (see above) fail, I give you those of someone else.

The Wild Iris

At the end of my suffering
there was a door.

Hear me out: that which you call death
I remember.

Overhead, noises, branches of the pine shifting.
Then nothing. The weak sun
flickered over the dry surface.

It is terrible to survive
as consciousness
buried in the dark earth.

Then it was over: that which you fear, being
a soul and unable
to speak, ending abruptly, the stiff earth
bending a little. And what I took to be
birds darting in low shrubs.

You who do not remember
passage from the other world
I tell you I could speak again: whatever
returns from oblivion returns
to find a voice:

from the center of my life came
a great fountain, deep blue
shadows on azure seawater.

--Louise Gluck

Monday, February 2, 2009

jah love jah love protect us


While I hesitate to say I'm any worse, I am by no means better and this tightness/wheezing thing has got to give. There is clinic this Friday, so it looks like I am going in. I'm just so damn tired from not being able to breathe properly. Plus it seems like the pred and levaquin are doing a number on my tummy, joints, and bowels. Oh, gods of complaining, hear my cry!!! I am not suppossed to complain around here to anyone else because, well you know, I'm always tired. humph. I'm a grouch today.

Since I have nothing enlightening to say at all, I'll shut my trap.

Prayers for Garran tonight.

prayers for us all.