Monday, October 26, 2009

I don't know what to make of anything, really.

I am in so much pain.
I am still swollen.
I have exercised so much, and I am still heavy and huge because THIS. ISN'T. FAT.
Can you imagine being treated like some lazy fat bum everywhere you go?
That is my life.
I look like hell and everyone assumes it is my fault.
The doctors, they all tell me I am sick, but they don't know why, so they all default to asking me if I eat a lot of salt and drink a lot of soda.
a) The answer is NO to both questions
b) Even if I did, NOBODY could eat enough to gain 30lbs in ONE DAY and 70 more within the week. It just. doesn't. happen.
I have actually been nearly 100% soda-free for about 3 months. I have had a small amount here and there, but I have been drinking mostly water and juice.
I don't eat much at all.
I walk a LOT.
I have spent the past 2 weekends pretending that I am not sick. I participated in a few local goings-on, all of which involved a HUGE amount of exercise.
I haven't lost an ounce.
Now, I am paying dearly for the "fun" I had. I can feel every muscle in my body right now and they are all VERY angry at me. I have had about 5 hours of sleep in the past 3 days.
My breathing is not that good and I have been getting massive heartburn at night, even when I don't eat anything. I am wondering if there is any way it could be related to the CPAP machine, what with it blowing air into my lungs, maybe just irritating them? I don't know... all the respiratory company cares about is their money, so they won't talk things out with me.

I was supposed to see a dietitian today, but I was in so much pain, I canceled because I couldn't handle the commute on public transit, and I also was in no mood to get talked down to about my weight, when all the damn weight is FLUID that they won't tell me how to get rid of.

I am scheduled to meet with one of the sleep doctors in early November, I think.

I am so exhausted. I am tired of fighting. I tell people I do these things I shouldn't be doing because I can't let the illness get me down and I have to live my life. It is partially true, and partially that I am a better actor than anyone gives me credit for. The truth is that I am falling apart and I struggle to stay alive every day. The truth is that I am scared. The truth is that most of the people who call themselves my friends have not been there for me. The truth is that I don't have nearly as much energy as I sometimes appear to have. The truth is that every time I take a step, or a breath, or I move my hands or feet, or anything else, I am in a world of pain. The truth is that I feel like I am suffering a fate worse than death, because being dead can't possibly be this painful... I just wish that the trip I seem to be taking to get to the other side wasn't so damn long and painful.

Monday, October 19, 2009

I guess it has been a while again...

I had another surgery.
Left eye.
Found out I am ALLERGIC to the stitches that are IN MY RIGHT EYEBALL... and that is why I am not healing all that well...
Got the CPAP machine, am having a lot of trouble with the full-face mask.
I need to call the nurse and see if there is anything that can be done about that.
I am taking part in a Fibromyalgia medication study, so I may or may not be on a low dose of Cymbalta. I had to stop taking the Topamax and the gastroparesis med in order to participate.
I am still swollen. I have no clue what is going on.
Things are getting worse, no matter how hard I fight.
I don't know how much fight I have left.