Okay, I am sorry, but I have to vent.
I have tried and tried to "get on with my life" but it doesn't seem to be happening. I am SO tired:
Tired of being tired.
Tired of having to explain why I can't do things because people (who know I have this disease) just don't get it.
Tired of taking SO MANY FLIPPIN' PILLS!
Tired of having to go the the hospital two days a week to get IVIG.
Tired of how the IVIG and prednisone make me feel.
Tired of how prednisone makes me LOOK (big belly, thin arms/legs... I look like a troll).
Tired of not being able to come off of any of these meds because this stupid disease just won't quit terrorizing me.
I'm so sorry, I know there are people who have it worse than I do. But, I hate being on the edge. Am I sick or aren't I? I am well enough to get up and do some things, but not well enough to do what I really want to do. I am well enough to go and sit at a desk, but not do anything remotely strenuous. I used to be so active, but now, I have enough energy to go to work and then go home and crash. Nice. Great way to spend time with my kiddo.
EVERYTHING I do is revolving around this disease. All plans I make are made with this disease in the equation.
I mourn for my past life. The days when I could go for a run just because I wanted to. Now, if I try to even trot, I get weak and my knees almost buckle. I miss the person I used to be. Yeah, I know, "You're still the same person." No, I'm not. Physically, I'm totally different. And the physical limitations have changed my outlook on life. So, mentally and emotionally, I'm different too.
Thank you for taking the time to read this. I had to get this off my chest. Maybe I'll feel better knowing that this is out there and I was finally able to say what I needed to say.