I’m not sure what happened, but my energy is at an all-time low. I’m in sloth mode. I got most of the Christmas presents ordered, but that pretty much used up my capacity.
Actually, I think what’s really going on is that my neurology is going haywire. I’ve felt like I’m on the verge of an MS relapse or already in one. I’m trying hard to ride it out on my own for several reasons.
One is that it’s almost Christmas and my husband’s birthday and my mom’s birthday and Adam’s birthday just a couple weeks later and basically I. Cannot. Be. Sick. Right. Now. I definitely don’t have time for a hospital stay.
I never completely recovered from the full-time job I had earlier this year. If you put my health on a scale from 0-10, with 0 being no MS symptoms and 10 being hospitalized, I got up to about a 9 while I was working. I got back down to maybe a 7 or 7.5 when I quit, where I’ve stayed since then. (By contrast, I’d say maybe I was at a 5 or 6 before I worked.)
Now it’s creeping back up again very steadily over the most recent couple weeks and I know I probably need to go to the hospital, but I’m praying and trying to fight it off with willpower. But the panic is becoming overwhelming. I know what the trigger was for the turning point of when I got worse: when I found out that we won’t have health insurance as of January 1st.
I can’t afford to see a specialist or go to the hospital now anyway, although I have pretty much lost all hope of ever being able to fix my credit at this point. I have so much medical debt and student loan debt that I can’t pay. I already avoid getting all the treatment I need even when I have insurance because I can’t afford it and am trying to avoid getting more debt.
But knowing that I’m getting worse and that I’ll be completely without insurance in about 3 weeks is freaking me out. A lot. If I don’t go to the hospital in the next couple weeks, I won’t be able to go at all until we have insurance again. That could be anywhere from a month to a year for all we know, since it depends on when my husband finds a different job.
On the one hand, I don’t see the point of going to the hospital. I don’t respond well to high-dose IV steroids anymore anyway; they do virtually nothing to fix my brain when I’m in a relapse. The only thing my neurologist thought might diminish my symptoms is the IVIg treatment that I couldn’t afford, which they wouldn’t give me in the hospital, anyway.
Most of the time, I try to stay as calm as I can about my illness. I complain about it much less often than I’m actually in pain and minimize the degree of it. Complaining doesn’t help me feel better and it just makes me more annoying to be around, so I don’t see the point of seeking that kind of attention.
But if I’m totally honest, it terrifies me that I’ve never gotten significantly better since I tried working full-time this summer. I stopped taking nearly all my meds and that didn’t help my brain become much clearer, either.
I still can’t work. I can only write one or two freelance articles a week – just simple 750-word ones with no interviews – and nearly always have to do revisions on them, whereas once I would’ve been able to finish a much better article in an hour and not need revisions.
I’ve got one client who’s paying me a pretty low rate for articles based around insane SEO keywords. (Believe me, they’re really strange.) I would have been able to do that work at one point and it just would have annoyed me. Now I can’t figure out how to do it at all. I can get about 300 words of it and can’t figure out how to pad the extra 450 words. I worked out how long they take me to write compared to what they pay, and it’s like half the minimum wage — but it would be decent if I could still write it in an hour or even two.
I would like to tell him to fuck off but we do need the money. Even if I only make a couple hundred bucks a month from freelancing, we can’t really afford to do without it. And my brain is just really not well enough anymore, which makes me feel worse about my loss of ability.
Things got much worse when I found out about losing our insurance. We don’t qualify for subsidies to go on the ACA marketplace because my husband has cheap coverage available to him, it’s just exorbitant for the rest of us. But it just seems like not having insurance when you have MS is not a great idea.
Am I going to be this non-functional because of stress until we have insurance again? Or will I eventually get used to it? I honestly had some hope that I’d get disability and finding out that I didn’t was another blow.
Things just feel scary. I feel like I should push myself harder to work, even if it’s something other than freelance writing work. Me not working is a luxury we definitely can not afford.
I’m just so tired of the fact that I have this disease that’s not very treatable even with insurance. But with crappy insurance and limited income, there’s almost nothing I can pursue to help. It just feels like the universe is telling me that since I don’t have anything to contribute, there’s no need for me to get healthcare.
I know, I wanted to move back to Texas, one of the meanest states in terms of a safety net. That’s the trade off for mild winters and a lot of jobs. And I still hated Michigan when I went back there last month and the cold and gray weather was unbearable.
But not everybody here in Texas is married to a wealthy rancher who can do without a helping hand. Even households that have at least one working member can still need help, and there just isn’t any available. Even if there are way more jobs here than there were where we lived in Michigan, they’re not necessarily better jobs. I think you have to be at a much higher caliber of employer to get anything resembling decent health insurance.
I feel like for most of my life since my early 30s, I’ve been trying to outrun all my bad circumstances and change my life, but I waited too long. Getting a degree didn’t work because we were still stuck in small-town Michigan. Then I managed to get out but I got sick. All my mistakes and circumstances caught up with me and now it’s too late.
Maybe I can hope and pray that after Christmas, after the new year, my husband will get a better job with better insurance. Maybe I won’t feel as much pressure to contribute income, or I’ll at least find a less taxing way to earn it. Perhaps just a return of the sun in the coming months will make things look a little brighter again. But I tell you, it’s tough waiting for that and believing that it will come.