I’m trying harder to get my disability and as a result, I’m seeking as much medical care as I can afford. As I mentioned in the last entry, I’m suddenly able to get a lot more access than usual, so I’m running with it.
I always thought my healthcare was optional because of lack of money and not feeling secure enough about our basic needs being met. Obviously I wasn’t going to bankrupt us, especially when the choices I was being offered were so expensive or risky.
But now, like magic, we suddenly have our needs met for the time being and enough money to seek medical attention. So I’m going full-speed ahead. I’m not second-guessing my options or spending the money on stuff I want more instead because this is what I have to do to try to get disability. I’m on the medical bandwagon for now, at least to give it an adequate trial to see if it helps. Who knows? Maybe I will feel better than this.
My neuropsych exam is next week. The doctor said it will be at least eight hours but may go into the next day. At first, I was afraid I’d really ace it and they’d find that I had nothing wrong. I’m less worried about that now.
I got far less sleep than I needed last night and then had an early neurologist visit. (Somehow my neuro could get me in on very short notice, which is weird in itself because in the past, I’ve had to wait months.) I was super productive and got a lot done yesterday, which felt really good.
But by the time my husband got home from work around 5:30, I was visibly really affected by my tiredness. We tried to have our daily conversation recap like usual and I was losing my train of thought a lot and practically falling asleep mid-sentence.
That’s almost definitely the state I’ll be in the day of my neuropsych exam too, so I’m pretty sure I’ll start strong and gradually get cognitively worse throughout the day.
(Incidentally, my experience yesterday also answered the question I’ve often asked myself: could I really go back to work full-time? Am I just faking? And nope, definitely not. After just one day, I felt a lot like I did when I was working last summer.)
But so, back to the neurologist visit.
I told him how I was really doing, instead of putting on a brave face and downplaying everything to look like a non-complainer. Not only is that the documentation I need to start getting for my disability case, but it also gets me more treatment.
I didn’t get steroids. Since I’ve had my symptoms so long, any damage I had from last year’s relapse is probably permanent.
I’m getting on a new anti-seizure medicine. Apparently, my seizure activity is too frequent and I need something stronger than I was taking before. I’m a little worried about it because the reviews say it’s notorious for causing rage and irritability. (I’ll give it a shot but won’t hesitate to seek something else if it’s that bad.)
I’m getting an MRI soon. I admit that I’m curious about whether last summer’s relapse shows any worsening on MRI.
I’m starting Tecfidera, pending the results of a blood test. I know the side effects of that are supposed to be fairly rough, so we’ll see how I do. He chose that one over Gilenya because I have a greater heart risk because of family history and that drug can cause heart problems. But if Tecfidera doesn’t work out, we’ll try Gilenya after that. A pill is far preferable to injections for me.
I told him I may be facing an insurance lapse as soon as next month and he was okay with that. I can still stay on the meds if I don’t have insurance.
Probably the most surprising part is that he referred me for speech therapy. I wasn’t surprised that he also referred me for physical therapy. But speech therapy was unexpected because I didn’t mention having any problems. Maybe he can hear something in my speech that my family can’t because they’re around me more. Or maybe he’s predicting problems based on the progression of the illness.
Or maybe he’s trying to help me get disability since he did ask if I was on it. I said I had applied in July. He asked if I’d been denied and I said yes and that I was reapplying.
But the weird thing is that I didn’t remember to mention it to him, but I’ve been having problems with swallowing and choking on food for a couple months. It’s probably my scariest symptom, just not super frequent. Speech therapy is the recommended way to address the choking risks for MS patients.
He said I could get a cane if I wanted to, but I’m not ready for that. I only really have trouble when I go from sitting to standing and I hope physical therapy will help with that.
I also have a new antidepressant from my family doc that I haven’t taken before and a call in to try to get county mental health services.
I’m committing to giving everything a fair trial and not quitting before I reach the point where things are expected to start working. Even if side effects make me feel really bad.
So here we go: full on the medical bandwagon. I will at least be able to say I tried the whole medical route. Maybe it will help me. At the very least, applying for disability and having my lawyer tell me point-blank that I had to start seeking more care was a wake-up call.
I am not disciplined enough with a super strict diet and daily exercise to manage this on my own. Most people I know who are taking a “natural” approach to MS are still seeking help from alternative providers like chiropractors, acupuncturists, energy healers, etc. I haven’t been doing that, either. I’ve just been trying to make sure I get 5 servings of fruits and veggies every day, get enough sleep, and try to avoid stress. But mostly I had the attitude that there was no point in spending a lot on treatments since nothing would really help much anyway.
Now I see that maybe I was wrong. I have to either commit 100 percent to the natural route or the medical route. But opting out of both when you have something as serious as advanced MS isn’t really a sound plan. I guess I had to both get sick enough from trying to have a full-time job and finally have enough money for some type of treatment.
If the mainstream medical route continues to make me worse, I don’t know if I’ll go for the natural route instead at some point. What I do know is that I’ve gotta start spending the money to get medical care for myself. I really can’t keep using the excuse that we’re too low-income to afford it. We may not usually have a lot of disposable cash, but I can at least get some treatments (even if not the expensive experimental ones) if we prioritize it.
If I feel really terrible over the next several months, I’ll try to keep reminding myself that I kinda have to do this if I hope to get disability. But maybe being forced to get treatment no matter what will actually help me feel better. Or at least maybe it will help me start thinking of myself as worth it.