There is nothing we can do to stop the progression. We can only monitor the progress and manage the symptoms as best we can to make you comfortable.
I’ve known this. I thought I even came to accept this. But at the follow up, I came to realize my reporting of everything going on became almost a plea with the rheumatologist to just fix it and make it ok, because I don’t want to deal with this every day for the rest of my life.
Yet, she gave me that sad look of “I’m sorry, I can’t help you.” And I know this. I understand this.
I know. I knew it then. I’ve known it for a while.
But for some reason, I left feeling so brokenhearted, so lost. Getting my blood work back Wednesday didn’t help how I felt about it all, either.
There are many, many worse things that I could be going through. I don’t doubt many people are tired of me and everything going on health wise. But you don’t really understand until you’re the one sitting there while a stranger is telling you that you are going to be battling the rest of your life with your own body, and it’s going to dramatically change your life. It’s scary. It’s unreal. It’s certainly a hard concept to take it. You can’t just take some medicines or have a surgery or anything and make it fade into a distant memory. It’s here for the long haul.
People forget too easily that we are all mortal, we all have weaknesses, and we all get scared sometimes. We will all die someday.
And here I sit, an ache still eating through my chest, because I still don’t understand how to cope yet, even though I pretend I do.
There’s hope that with a little less stress on me when my 90 days at work are up, I can give my body a chance to strengthen some, and maybe slow the progression naturally.
Because I am exhausted all the time. And sore. And miserable. My eyes burn and I feel like I haven’t tasted water in a century, even if I’ve just downed two bottles of water. I’m in this terrifying fog that I get lost in, and I’m scared I’ll forget how to get back out of it. I want my energy back. I don’t want to worry about my organs. I don’t want liver damage when I’ve purposely avoiding drinking alcohol. It isn’t fair. (Yes, I’ve fallen back into the ‘Why me?!’ crap, I’ll be over it soon.)
Truth be told, I want my life back. I want me back. And I’m working at it, I’m getting scraps of myself back. Sometimes it’s vague or fades quickly, but sometimes I get chunks that last longer. Like, I think my writer-ly brain is starting to wake up again. It’s about damn time.
Speaking of – you remember the craft analysis that I was worried about? For my Creative Nonfiction class? Totally got a perfect score on it – 100/100 points. She even wants me to email it to her as a reference for future classes as an example. 😀 But back to the point…
Basically, this is going to be a constant battle, one that I won’t always be willing to fight. I have to, however. Partially because I’m stubborn. Mostly because of the people that need me. So it’s time that I write like a good little writer and try to make something of myself. At least then I’ll feel like I’m worth something again.
Until next time, when we will have a much lighter subject matter-
~Angel
Misadventures of a Misfit 