How do you spell relief? For me, the call came in this morning. My disability insurance renewal has been approved for the next six months or so. The relief came along with waves of pain that reminded me this isn't all in my head.
Melissa will want to smack me for this but there's a part of me that refuses to believe. I can't be disabled at 27! It's for old people or people who get heavy things dropped on them working construction! Therefore, it has to be a character flaw somewhere in me.
No, I don't believe that with my head. It's just something that we Chiarians seem to suffer more than most people. At the same time we are trying to get better, we must prove that we're sick. I've been in an agonizing period lately. Pain has been my primary symptom along with all that it causes. It's almost impossible to doubt pain that you're feeling.
Even so, I had a terrible fear that I wasn't going to get the insurance renewed. I know I'd rather be working. Despite the fact that I make a point of using the time I have, I know it would be so much more precious to me if I were working. When I was at ACS, I would get home between 11:30pm and midnight. The hours between then and 3am were mine and I'd sit watching the History Channel most of the time. Weekends consisted of Sunday and Monday unless it was a mandatory overtime week. They were precious to me in a way that's hard to remember.
Money is another reason why I'd rather be working. Melissa and I get by fine on her income and my disability checks. Even so, I know I could easily make double what I get now. Even if we paid double what we pay now in rent, that money would be more than enough for a lot of things that we want. We could take real vacations and have savings for the future.
No, the reason why I'm not working is that I'm too damn sick! Yes, I do take advantage of everything I can right now. It's called making the best of a bad situation. The only alternative is having constant meltdowns.
I'm a little worried that I'm getting worse. I was pretty healthy around this time last year after all. Maybe I was and maybe I wasn't. It's so hard to remember stuff from so long ago.
That's part of what this journal is for. Last spring and summer were times when I complained about pain so I guess that's nothing new. On the other hand, my concentration and other mental skills were better. I was able to do a lot more without triggering all these symptoms so I guess I'll have to guess that I am getting worse.
Enough about Chiari for now. I have to go to the hospital tonight for my sleep CPAP test. No panic so far. I think getting the call about the insurance drained my capacity for panic. Don't worry. I'm sure it will come back when the bastards start attaching wires.
My only problem at the moment is the lack of caffeine. I can't have caffeine on the day before the test and I'm feeling it. I'm looking over at the bike and shaking my head. It won't be easy to get myself on that thing today. I don't think this means I'm an addict, though. I've gone other days without coffee recently and only had half a cup to finish the pot yesterday.
A little caffeine won't hurt. For instance, I'm not cutting off my chocolate supply for the trace amounts found in there. I may or may not have a few Hershey's Kisses. It depends on how hungry I am and what cravings pop up. After all, I'm far more likely to crave the honey mustard pretzel pieces or the Cheese Nips.
Overcoming the terror is about frame of mind. Usually, I overcome it by taking charge of something as much as I can. Yesterday, I called the disability insurance company in hope of getting the news instead of waiting for it. That was taking charge. Hospitals usually don't like people taking charge so it's not much of an option. I tend to settle for being mildly grouchy.
Mildly grouchy lets them know there's a line they better not cross. It's more convenient for me to never really define that line. After all, I'm not exactly sure where it is. The people at the Sleep Center tonight will have to deal with it.
The last tech/nurse did a reasonable job of it. I didn't like her at all at the beginning of the night. It rarely fails that I will get a tech who reminds me of Atilla the Hun instead of the nice one standing right next to her. Even so, Atilla and I got along alright. She did what she could to make the night slightly less uncomfortable. All I have to do is put up with trying to sleep with a whole bunch of wires attached to me by sticky and itchy stuff. At worst, it's a horrible night's sleep. I have those pretty frequently.
Partially because of tonight's test and partially because it was just time, Melissa cut my hair last night. I'm not blonde anymore although she says there are still highlights. I like the brown hair even less than I used to because I know there's an alternative. So, after two weeks of letting it grow, I'm reblonding. I liked it that way a lot better and Melissa did too.
It was weird looking at my face in the mirror again this morning. I thought the blonding made me look a little older and that's part of what I wanted. After a few weeks, it felt like normal hair again instead of straw like it did at first.
Then again, I prefer my hair short so it is nice. The only drawback is how easily I can feel my "zipper" back there. I don't know if it is but it feels inflamed somehow. I'll feel better when it's a little longer and blonde again.
Once, I told Karen Russo that I'd prefer it if my body more reflected who I am. The blonde hair helped because I think lighter colors better reflect me. It was also something that I enjoyed managing. The idea of me using conditioner intentionally would have been absurd otherwise but I really liked having my hair neatly styled. What I need is a genetic modification to make my hair permanently blonde. After all, my hair grows so fast!
I got seven weeks of the dye looking half decent and I think that was after letting it grow a week first. Maybe I'll just get used to the idea of reblonding every two months or so. We're thinking of using a different shade this time. I was a pretty dark blonde last time so I'll have to see if something different would lighten it more.