They say, oh! What a tribulation...
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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.
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.
argh.
this, my friends, has given me the utmost validity in self-medicating.
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.
o Well, I'm not healed, but I'm certainly no worse. My breathing ability has returned to normal but my sinuses are KILLING me. I'm not sure why, it's wierd. I wonder if it might be a bit allergy related, we've had a bit of a thaw here so maybe that stirs up the gunk? Maybe just some sort of headache from being on loads of drugs for three weeks? Who knows. Adding the zithro in seems to have made a big difference in how I feel for some reaosn though (maybe just timing?) so I am definitely going to ride this out for a while.
I go to clinic on Friday and I am demanding some answers.
I often think I need to switch to a bigger clinic. Mine seems rather inefficient and it's run by a very overworked NP. You can't really get to the doc, the waiting room is too small, and sometimes I feel like I'm the boss when I want someone else to be the boss, if that makes sense? But at the same time, I am a creature of comfort and I am comfortable with these people, I have developed a relationship with them and I'm lazy. I don't want to have to drive 2-3 hours to go to the clinic when I have one I can ride my bike to. I think, sadly, I'll have to get sicker or recieve sub par care for something serious before I really get motivated to make the change. I know that seems ridiculous, but it's the honest truth.
My fingers look incredibly clubbed these days. It doesn't seem like that should happen so quickly after an illness like i had - something acute rather than prolonged, but they are definitely clubby. I am not all that fond of my hands anyway, so ugh.
I'm back in the pool though. My energy was a bit down, but I can still do my usual 1/2 mile routine. My shoulders were really really sore though, and I can't help wonder if that isn't the levaquin at work - I was almost in tears last night because of it (plus I walked into a closet door the other night resulting in a nice bluish bruise on the side of my face which has been throbbing as well. Wah wah, poor me).
I think I need to say something positive here before the pity party comes to an end...but when all else fails, I go to the music, because, as is my motto, life is a medley. yo.
Here is the song of the day - M.I.A. "Paper Planes" I've been a quasi-M.I.A. fan for a bit, but this song has been on my rotation for a few days. It is in the movie "Slumdog Millionaire" as well. Enjoy.
There 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, CF...how 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.
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.
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.
