I’ve been in a daze. This morning I found out I don’t qualify for my university’s student health insurance plan because I’m an online student. It’s for on-campus students only.
It was also my last option.
In a totally last ditch effort, I called the woman who’s managing my social security disability claim in the hopes that, I don’t know, maybe she can push my claim through so I can at least get state insurance again.
We were on state insurance, but the annual income requirements changed and now we’re just a few hundred dollars over the limit. We no longer qualify, no exceptions. Because I can’t work outside the home, we can’t afford any of the state market plans or even my husband’s company’s plan. We wouldn’t be able to afford rent.
Without insurance, though, I can’t continue treatment, which means I’ll never be able to work outside the home. I was doing better with treatment. Soon I’ll run out of my medications.
Disability usually takes a long time to be approved. Sometimes you’re denied even after appealing. I’ve already been denied once; my hope was that I could appeal and eventually be approved.
That doesn’t help me now, though.
I don’t know what to do. I’m scared, to be honest. I’m already flaring with treatment. My rheumatologist thinks I need to add on a medication or two. I know that without any treatment, I’ll be bedridden again; before I started treatment, I was bedridden and needed Mike’s help just getting dressed. I couldn’t work from home at all.
I hate getting caught up in grief, but this wasn’t my life at all before I got sick. I worked three jobs. I had a lucrative career. I went hiking and bowling. I played softball. Then I got mono from the Epstein-Barr Virus, and I never got better. It triggered my UCTD, which stole my life. I don’t go hiking. I can’t even play video games anymore, because using the controller hurts my hands. We’re struggling financially. Mike is my husband but also my caregiver, and he’s got his own health issues that need caring. (Yet he still stubbornly insists on doing things for me.) I have family who help when they can, but they’re struggling too.
Honestly, I went back to school not only to help me with marketing my books, but also so that, after I found the right medication combination, I could return to the workforce. I need to feel useful. Now I’m scared that I’m just earning this degree to feed my pride, meanwhile racking up more debt I won’t be able to pay off.
This illness stole all of my hopes and dreams. I wanted to have a family. Now I just pretend that I never want to have kids. I don’t know if my body could tolerate pregnancy and parenting. It can barely tolerate cooking a meal. Lately I’ve been in so much pain and buried under so much brain fog, I can barely focus on my school work. The material is difficult as it is. (Why do they make accounting and macroeconomics so hard? I mean, seriously.)
I want to fight for the future. I’m not finished yet, damn it. But people like me live in a limbo.