I dunno why I'm sharing this with you all, probably just a means of coping with it?
I don't know what to do. I'm supposed to be happy during this time of my life. I'm in a relationship with the nicest guy I've met. He has an amazing job and he just won a bid on his first house. We can finally move out of this cramped, noisy, leaky-ceiling apartment. We can move into a nice house and start building a family there.
But all I can do is cry. Physically, that's about all I can do. I've had ulcerative colitis/chron's disease since I was 21. Five years of off and on health took a toll on me, mentally and physically. But earlier this year, I thought I finally beat it back enough that it wouldn't have such a control on my life.
Then I found out I made a typo on my health insurance application. Long story short, my health insurance was terminated due to a grave mistake on their part when trying to fix it. I started running out of medication. $1,000/month medications. My symptoms crashed. As the health insurance marketplace dragged their feet to fix the error (still not fixed more than a month later), my health deteriorated as I fully ran out of rationed, inferior medication. I sent in a form, pleading with the pharmaceutical company, and they were gracious enough to send me one of my medications, the oral one, free of charge.
It was too far gone, though. I got the medication two weeks ago. The medication isn't designed to induce remission by itself, so it's barely helping. Combined with my mental state, it is the worst I have ever been in my life. I'm still suffering from 20-30 bloody diarrhea bowel movements a day. My descending colon shoots a pain like you wouldn't believe when any slightly solid waste moves through it, causing me to be wracked with nausea until relief. My anemia has gotten to the point that I can no longer walk to my car without stopping to rest. I can't stand up with any speed without nearly passing out. My legs start to cramp up after doing any exertion, like walking up flights of stairs. My tongue gets swollen and I get strange sores in my mouth. My chest hurts and my heart pounds when I do the least bit of work.
My transition has taken the back burner as all my fat wastes away from my smileless face and droopy eyes. I never look at myself in the mirror anymore out of fear of what negative changes I'd see.
I can't work. I tried to today. After lifting a few boards into a truck, it felt like I just ran a quarter mile. I got a shooting cramp in my stomach and had to use the bathroom, which was the third time since I clocked in an hour ago. I left.
My mom asked me what I wanted for my birthday, which is coming up soon. I know my parents are a little short on money, so I didn't ask for much. I asked for 5 or so hours to be added to my paycheck (I work for them) to help me pay for a doctor's visit since I can't function anymore, and the business could afford it better than they could. While I was in their house that day, I bent down to pick up a piece of trash that missed the can. My mom was standing above me with $200 in her hand. I refused, telling her it was too much, but she said she was saving it for me. I just cried.
A new house always stresses people. My boyfriend is paranoid about losing his job even though his boss loves him and there's no lack of work in sight for a long time. He dwells on worst case scenarios, which is good to a point, I guess.
After realizing I can't work, he was visibly more stressed. My hours were dwindling anyway at work because it's a slow season, and I could tell that was making him uneasy. Couple that with my failing health making it harder and harder for me to work as the weeks droned on, it started putting stress on our relationship. My poor health makes my prospects of finding a new & better job (something he remains adamant on me doing) even more bleak.
With just his income, he can easily afford the house. He's just worried about worst case scenarios, like job loss, accident, etc. It's smart to think ahead, and I understand his issues. He told me today that he can't afford to feed two people alone (which is untrue but I don't want to impose myself on him like that). I waited a bit and offered to move in with my parents and try to work a little there while I was sick so he didn't have to pay for my food. I left to go tend to the oven. When I came back, he was crying.
I hate making him cry. I hate this disease, I hate not having medication, I hate not having insurance, and I hate my ->-bleeped-<-ty state for not expanding medicaid.
I made a doctor's appointment for Tuesday. I don't know how much longer I can hold out. No matter how much I sleep I'm still exhausted. I wake up every hour to use the bathroom, anyway, so I hate sleeping. I don't want to go to the ER.
edit: Update below
