Yesterday when I woke up I was ok and not bad. As the day went on I started to hurt even more. It seems my mornings aren't too bad and later in the day it gets worse. Sometimes around 6ish I get a burst of energy, but yesterday I did not. My whole entire body was burning, I had sharp pains throughout and all my joints were hurting. I took pain medicine as well as a muscle relaxer and it did absolutely nothing but make me feel drugged! I didn't fall asleep until 4:30 am. So today I've been hurting as well and I didn't take any pain medicine or muscle relaxer. Why am I going to put that stuff in my body if it doesn't even work? I am so weak and I am so tired of being weak and hurting. The treatment they want to put me on still has to be approved by my insurance. I don't know what to do if they deny treatment..I don't even want to think about it, but it's hard not to. I just want to be normal and feel better. I don't understand how something can take over your body so much to make you disabled and the doctors not know why or how. It's frustrating to sit here and not be able to have a voice. It's like as if I am sitting in the back room and watching my life pass by, but still being present. Of course I would get a rare disease. ha! I need to smile more and I need to laugh more. On Thanksgiving, I made a joke about my disease, but nobody thought it was funny. Sometimes you just have to. And if you're not, it definitely brings you down.
About a month before I was admitted my arms wouldn't straighten out all the way. I adjusted my car seat to be able to reach for drinks through the drive-thru. I adjusted my Life. I couldn't pick up my niece because I was so weak, and yet I never said anything. And again, I adjusted my Life. So we know what's wrong now, but I don't know how I will feel tomorrow. So everyday I adjust to how I am feeling. I just want to better.
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