Friday, January 30, 2009

there's a silver lining shining above me

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

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

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

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

Sunday, January 18, 2009

I'm it!

Right. Courtesy of Meg (this is your name, right???) (65-Roses, I've been tagged for this random photo game...

1.) Go to your 4th folder where you store your photos.

2.) Select your 4th picture (no exceptions)! Seriously.. no exceptions.

3.) Post the picture with an explanation and link it back to your tagger.

4.) Tag 4 people to do the same!!


So this is mi bambina when we went camping over the summer.

I am not going to tag people, sorry to be the big butthead here, but all the people who read this that I would tag have already been tagged, I think. So if you've read this then you are automatically tagged. Sorry to be the big tag game loser and all. Looks like I'm forever "it."

Thursday, January 15, 2009

living in a powder keg and giving off sparks

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

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

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

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

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

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

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

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

Saturday, January 10, 2009

I don't want to waste your time with music you don't need

I read this blurb about Patrick Swayze and how he wants to live long enough to see a cure for his pancreatic cancer.

I have turned into such a skeptic.

I don't think I ever really believed in a cure for CF even as a kid when my parents used to talk about it. It just seemed like such a moot point - I felt like they could hope all they wanted, but while I was living with this thing I wasn't about to get my hopes up. As I've gotten older and some understanding of pathology and genectics and pharmaceuticals and maybe just common sense, it is completely obvious there will be no cure.

What has been cured? I can't think of anything. Eradicated via vaccination, yes; prevented via nutrition, education, etc., yes; rendered livable via surgery, or pharmacy, yes. But cured, no. People could argue cancer has been "cured" by chemotherapy or radiation - but not really - isn't there always a constant threat of preoccurance, coming out of remission? They surely don't use the word cure to speak of cancer. So what has been cured? Nada that I can think of.

So I read of poor Patrick Swayze, so quick to wear the cloak of disability: the heroic disabled fighting through until there is a cure, and I just felt bad for the guy. It seemd so much easier knowing the cure is intanglible and unreal than to buy into the idea that there is one on the horizon. I feel like it is the wrong way to motivate. Besides, there are much smaller miracles that I can rely on amazing me everyday.

I had a recent conversation about what life could have been without CF. I used to think if I ever got three wishes from a genie (you know, like that same day they find the cure) I would first wish to have had no CF.

I'm not so sure now. I'm certinaly not all oh-I-love-my-Cf-so-much. I hate it. But I can't think of anything that has been a bigger motivating force in my life than that. Sure through pure definace and rebellion, but certainly a driving force.

I don't think my life would be much at all like the one I know now if I had not had CF. And so how can I really want to trade that in? There are parts I would of course like to eradicate, but as a whole, in the whole cosmic scheme of things I think things have worked out for me as they were meant to in much the same way the earth is just the precise distance from the sun. And I think that force has been so much more real. It was intrinsic: there was no waiting on "them" to figure it out for me. I was who I was because of Cf, not because of what life might be like without it.

I hope Patrick Swayze gets his cure and inspires thousands of cancer sufferers to have hope, but I hope they aren't fighting on for some elusive goal but rather fighting for the sake of the euphoria and the chalenge of the fight itself.

Thursday, January 1, 2009

I wanna rock your gypsy soul

I had this realization the other day: I am healthy! I think in the past year of my "coming out" I kind of forgot about that. I went through a sort of metamorphisis realizing that I am no where as near as healthy as I could be because I was not taking care of my health properly. So in the last year(+) of Cf focus I started regular treatments, swimming(though I have not been in a WEEK! Damn holidays), and I did my fist round of long overdue IVs.

During all this I came to the understanding that I was not at all as healthy as I thought I was. Having not paid attnetion to PFTs for years, I thought I was still in the 70s of tmy late teens only to realize that last November I was hovering at a mere 50%. Now, a little over a year I am at back at 74% a number I haven't seen since 1995, and my weight is the highest ever (enough that I actually want to LOSE a few pounds) and I feel pretty good. I can run on a treadmill now without a near death coughing fit and laugh much longer before I melt into an old man smokers cough.

So I was driving and thinking that I am pretty damn lucky. Neglecting my health for over ten years and abusing my body has not done the damage it could have. I've regained the same lung function I had at 18. That is something to be completely grateful for. I have been focusing on all I did wrong for so long and trying to rectify it that I think I have neglected to give true thanks. Bless my good non CF genes and lady luck and maybe the gods and the universe as well for gracing me with a resilient body and the ability to still bounce back.

I need to have this gratitude now because while I realize that I am in pretty good shape and fate has been kind to me, I know with more clarity than ever before that it is all transient and I should take nothing for granted. As I read through my blog roll and bookmarked blogs I see my own face reflected on the screen when I read of my friends on 02 and abx and and tx and pre and post tx. I'm not there yet but I no longer have that sense of me and them. Now I feel that it is US. We all have this disease, we're all heading the same direction with it, just at different points on the axis. I have to be grateful for eveyrthing this Cf life has given me and try to focus on now. Right now, I am healthy, plump, and content.

I have to recognize each gift while it is here because we all know how fleeting these moments can be in the face of CF.