I’ve Been There


The panic attack I’m having is not really the most relevant/urgent panic attack in my life. I should probably be freaking out about dear old Hurricane Sandy (which hasn’t really hit Middletown yet, not sure if it will), but in terms of that, I’m mainly just hoping that we lose power ASAP for party/love/bonding purposes.

The panic attack I’m having is about MS.

Because all the medications that we’ve been told would work seem to be crumbling.

Because Rebif isn’t working.

Because of this article. Read this article.

Because Tysabri kills and Gilenya kills and BG-12 isn’t out yet. Because steroids make me sick and I’m feeling disillusioned about Copaxone. Because  14/18 days being migraine days is not the quality of life that I want to have.

Because I feel like stories aren’t being told.

Because I was talking to a friend and he was talking about Parkinson’s and he referenced the idea of becoming a “lifeless sack of meat” and then didn’t see how that could apply to me because MS isn’t as serious?

Wikipedia time: Almost any neurological symptom can appear with the disease, and often progresses to physical and cognitive disability

All of the people who said “Oh my god, I would kill myself if that happened to me” after I got diagnosed a) didn’t think about what they were saying to another human being and b) would probably just keep going like I do and not actually kill themselves but also c) thought that MS was serious.

MS is serious. 25% chance of being in a wheelchair by age 28 is serious. Think of how much that percentage will go up after those first 10 years. Think about this stuff. MS can “lifeless sack of meat” the hell out of you just as much as any other neurodegenerative disease. Think of all the stories that are untold because people can’t tell them. This positive outlook that the younger patients are being told to have might be a bit unwarranted.

I’m not saying don’t ask about what this life is like, because people should ask. And I want to be askable, I want people to not be worried about offending me. I think it’s just hard sometimes to deal with the preconceptions (misconceptions, really) that people have about my disease. This idea that MS is neurodegeneration-Lite is rough. I promise, you don’t want this disease either.

Yesterday I went to pick up a prescription and it wasn’t ready yet. Yesterday a man showed up at the pharmacy, and the pharmacist said to him “vitamin D and prednisone? It’ll be ready in about 10 minutes.” And he sat down and I said “Ha, vitamin D and prednisone? Been there.”

“Oh, yeah, it’s for my dad.”

“Oh, okay, I have MS.”

Silence for a while.

“Can I ask you what it’s like to live with MS?”

We talked a bit longer and then the pharmacist called him over and asked for the birthdate of the person whose prescription it was (his father). The year was 1947.

You know when you make up a narrative to explain a moment? All I could think was that his dad has MS and can’t talk about it because he can’t talk. And the guy that I talked to wanted to know what it was like. Because his dad couldn’t answer. All of us with these diseases can become vegetables. Or, more accurately based on what we’re made of, “lifeless sacks of meat.”

Vitamin D and prednisone. I’ve been there.

(thanks to my housemates who are trapped inside with me for helping me formulate this thought)

One thought on “I’ve Been There

  1. MS anxiety sucks. I’ve been there. MS is a volatile disease, but the research is promising.

    I was diagnosed 24 months ago (at 21) after developing leg weakness & ataxia, altered cold sensation, paresthesia (from bra line to tips of toes), difficulty going to toilet & losing all sensation in my girly bits. I was prescribed Tysabri right off the bat, and tested JC virus negative. My symptoms disappeared within an hour post-first infusion & I’ve experienced no symptoms/relapses since. I continue to be JCV- & will stay on Tysabri indefinitely. It’s a wonder-drug, as long as the TOUCH system is adhered to. If I was to test JCV+ my neurologist said he’d probably put me on Gilenya. We’ll see!

    I go to a local MS clinic every 3 months, and it’s a bit disheartening to be one of the few there walking in & out. The thing is, most of the other patients had MS for years with no treatment at all, while I’ve been on effective medication from the start. So, ending up in a wheelchair at 28 really isn’t a thing I worry about at all.

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