When I walk, my joints swell up. I know you all get sore right? Well, try not being able to walk, and feeling like someone has taken an electric drill to the joint and is just grinding away, even when you aren't moving. Try learning that you can't just sit anywhere because certain sitting angles won't work. When my shoulder decides to swell I have a hard time getting my arm up over my head. The drugs, or Boris we aren't sure, have cause my ankles to swell so that both my favorite Converse and my gym shoes won't fit. Oh trust me I love being over weight and now have fat ankles.
I have to take inventory of every ache and pain. I can't just toss back Tylenol (not while on steroids) and call it good, I need to analyze what's going on. I have to check the inside of my nose to make sure it's not scabbing again, I have to inspect spots or bumps on my skin to make sure it's not a purpura rash or a potential lesion. When my eyes hurt, I immediately have to look and see where it's red. I can't wear my contacts because the whites of my eyes are inflamed currently. So if you're keeping score I now am swollen from drugs with fat ankles and glasses. My beauty knows no bounds ....
I hate that I'm in the position I am in. I hate that I constantly feel I am not good enough because I am not doing what everyone else is doing. I am in a special category. It friggin sucks.
Then, there is the much much bigger issue. What if Boris attacks me when he wakes up again with more fervor than this time? I got off easy really. The time I missed was mostly from radiation. I've been working with all that's been going on with Boris. But if he takes a swipe at my kidneys ... Well I won't be here. If he chomps on my lungs or squeezes my trachea ... More missed work. I find myself quite stressed at the potential. I don't want to lose my house, I don't want to lose my job. I don't want to be hospitalized, I don't want to take immunosuppressants, I don't want to die.
On the forum for Wegeners that I found, one of the people who's stuff I read has died. She died from complications from this disease. Then again, only a few years ago this disease was considered terminal. Now it's incurable but people can live. But not forever apparently.
Do you have any idea what it's like to feel like there's an Anvil being held over your head by a rope? I have no control over Wil E Coyote if he wants to drop it on my head. I have no control.
And for those of you who want to tell me that exercise helps? Go back up to the top and read that it triggers my joint issues and then it takes me more than usual to be able to just walk again. Yes once we get these meds out of my system I can start doing things more. But don't claim to know what's right for my condition that isn't common. Don't throw your know-it-all crap in my face. I'm trying to manage the fact that I have a disease that could kill me. I look in the future and there's no longer and endless road stretched out in front of me. I am scared of what's up there. It's dark and twisty.
I'm scared, OK? I just want to find my happy place. I just want to have a day where nothing hurts, I can breathe 100%, hear perfectly, and see fine. Is that too much to ask? I want to go somewhere and NOT think about what I have. I just want a normal, regular day.