My neurologist called me with the results of my MRI. Despite the alarmed reaction of the MRI tech, there was no new activity since my relapse in August 2017.
Based on how bad my symptoms have gotten, I thought for sure the MRI would have shown that I’ve gotten worse. But according to the MRI results, my disease is stable. If I had already been on a disease-modifying drug, it would be said to be “working.”
That leads me to question why the hell I’m going on these medications, actually. I’ve never wanted to be on them since they’re not a cure and they don’t provide symptom relief. They “might” prevent relapses. But they also may not.
According to the National MS Society page, most people on DMDs will still have an occasional relapse anyway. The fact that your disease is stable is unrelated to whether you should be on meds, they say.
They also say that even if the meds make you feel worse than the disease, that doesn’t matter. Take the drugs anyway because they’re “working behind the scenes” to slow the progression of the disease.
But the vast majority of the people in the MS groups online who end up using canes or wheelchairs were taking DMDs. Annette Funicello, the poster child of every MS-er’s fears, took every therapy she could, even the experimental stuff like CCSVI. And she still got worse anyway.
I honestly really don’t believe these drugs make a difference. I haven’t taken them since I was diagnosed almost six years ago. My symptoms may have gotten a bit worse, but my MRIs have not significantly changed during that time. Again, if I had been taking the drugs that whole time, they would have been deemed successful and effective based on my MRIs.
So far I am on the lowest dose of the Tecfidera trying to ramp up and I don’t know how I’ll increase it. I’m going slower than I’m supposed to because it’s already pretty intolerable. The interesting thing is that while I’ve had some of the “flushing” (an idiotic euphemism for feeling like you’ve been dipped in fire from head to toe), I haven’t had the GI effects yet. I’m told those will kick in once I ramp up to the full dose.
Actually, the side effect I’m finding most intolerable is the joint pain. It’s much worse than the pain I already had from the MS itself. I’m also having problems with feeling like my eyes are always burning. If it gets worse, I may have to stop wearing contacts.
I don’t have many other options as far as disease-modifying therapies. All the old school injections, the interferon drugs like Rebif and Avonex, are a bad fit for me because they cause severe depression and I already have that.
Gilenya has a risk of causing heart problems, which I’m at high risk for because of my mom’s heart attack at 53. I’m high JCV positive so Tysabri is out. That really only leaves a couple options if Tecfidera doesn’t work.
Here’s the thing, though. I’m reading lots of stuff about the benefits of intermittent fasting and calorie restriction for MS. I can’t lie: it sounds super hard. And my husband doesn’t seem to be on board with me doing it. But I really believe it would work and I think what we believe does impact our experience, especially when it comes to health.
Doctors had a very hard time determining if my August 2017 relapse was a stroke or an MS exacerbation. Only the positive lumbar puncture ruled MS. The MRI looked like a stroke. My symptoms were of a stroke. And the lingering effects are still like that of a stroke, too.
My most recent MRI showed a fairly large 8 mm lesion in the right parietal lobe of my brain. That’s the part of the brain that controls your ability to integrate sensory information, knowledge of numbers, and manipulation of objects. (In other words, exactly the things the neuropsych exam revealed.)
I need physical therapy again, which my neurologist referred me for but I couldn’t get because our insurance ended.
I should be trying to live as though I had a stroke and aiming to prevent another one. I have extensive white matter loss, which also puts me at an increased risk of stroke.
And here’s the other thing: I really think the body knows how to heal itself. If I’m super honest, I haven’t been doing enough of the right things to help my body repair itself. In particular, I’ve still been eating a bit too much junk food and processed food and not getting enough exercise.
I hadn’t ever really tried a strict diet and regular exercise. And I hadn’t ever really tried the disease-modifying drugs, either. I feel like everybody wants me to be on the drugs and that I’m supposed to be on them so I can get disability payments.
But the truth is that I don’t want disability. I don’t think this is just denial. On some level, a big part of me is really trying to fight back against that.
I don’t really know what I want to do next as a career. I definitely don’t want to be a writer anymore. Being in marketing and communications made me realize that a full-time writing job was not as awesome as I always thought it would be. And I am SO OVER freelancing as a career (and was already over it more than 6 years ago.)
I haven’t done anything else. I probably have to go to grad school but 1) I’m two months away from defaulting on my loans and 2) I don’t think I could currently retain information in this state.
I think that with a consistently good diet and regular exercise and some vocational rehab, maybe I could get to a point where I could do grad school. That’s still my dream.
I feel like everybody’s trying to count me out of the game. My husband always points out how sick I was with my job last year and that’s definitely true. But maybe it was just that particular job which was a bad fit. I mean, shit, I was even happy when I worked second shift in a call center when I moved down here. I was also happy when I worked part-time in a library.
And maybe I just need a job where I don’t have to get up at 6 am every day and where I don’t have a 90-minute commute each way. I probably also need some vocational rehab and to learn stress reduction techniques so that work-related stress doesn’t lead to insomnia, which was what went wrong with my job last year. If I don’t sleep enough, my health quickly goes downhill.
Maybe I do need disability in the short term. If I get it, maybe I’ll find that working part-time (preferably in a library or in some type of capacity that helps people) will be enough to keep me from feeling useless. I do know that not working at all is making me miserable and isolated. I definitely don’t want to live like this for the rest of my life.
Or to quote my new favorite song right now, “Harmony Hall” by Vampire Weekend: I don’t wanna live like this, but I don’t wanna die.
That sums up exactly where I am right now. Everything within me is screaming that I’m on the wrong fucking track. I don’t want to be stuck at home doing nothing for the rest of my life. I don’t want to be taking drugs that make me feel worse than I did before, just because they “might” prevent me from having another relapse. I don’t want to say that all my dreams are over forever at age 45 (as of next Tuesday.)
No no no!! This is not what I want. I don’t want to be in the “sick girls club.” I find that label embarrassing and pitiful. I am a fighter. No matter how much life tries to knock me down, I always fight back – and I am not ready to change that now.
I have waited for over 20 years for my chance to go back to work and pursue my own goals once my kids were grown. I do not accept that I’m out of the game now just because of MS. Lots of people work with MS, even people who are in wheelchairs. Even people who have had strokes go back to work.
I know that we need for me to work. At the moment, I can’t. I need too much sleep and I’m needed for the kids’ transportation from school. There’s almost no school-provided busing here and the roads are too busy for them to walk.
But there has to be some other solution, other than just either putting them in the bad school or me being on disability forever. Even if I just spend the next 2.5 years trying to recover. (But what if I could spend those 2 years in grad school and be ready to work once the kids are all done with high school?)
I don’t think I can work full-time in my present state. But I am not ready to count myself out forever. Even if I do get disability, my goal is going to be to eventually get off of it again.
This is not what I want from my life and I am so fucking sick and tired of feeling like everyone else is taking my choices away from me. If the problem is that I’m too sick, I may have to prove that I can get well on my own. Don’t underestimate how much I will fight when I’ve got something to prove.