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View Diary: Sometimes, it's just not fair (24 comments)

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  •  A reflective case: my spouse got me through it... (21+ / 0-)

    Thank you for sharing your (plural) story!

    I was diagnosed about 4 years ago after a bout of optic nueritis, during which I lost most sight in one eye for about six weeks.

    Retrospectively there were other potential red flags: I fell down the stairs and broke the hell out of my wrist for instance. Oh did the triage personelle at the hospital give my then-fiance the hairy eye while I was tearfully explaining the circumstances in the middle of the night.

    I study neuroscience and have taken a lot of courses in immunology. I should be a clinical reference of facts, not fear, when it comes to this sort of thing. But I wasn't. I shut myself off from all sources of data and obsessed over the worst case scenarios. My fiance at the time (this happened three months before our wedding date) didn't flinch or shy away in the slightest. He basically acted like it was no big deal, and... it was the most comforting possible reaction. He wasn't trying to minimize what was happening. He just made it clear that it didn't matter to him. At all.

    I've never watched the West Wing, but I have to thank it for getting the basic gist of RRMS out to the public.

    As a grad student (and subsequent postdoc) my insurance did less than crap to cover treatment, but I was lucky to join a clinical trial that provided FDA approved drugs at no cost. I've been incredibly lucky with minimal symptoms and no rise in EDSS. I have a stack of huge MRI photos of my brain, which part of me thinks is awesome. I have optical tomography scans of my optic nerve, also very cool. I am also utterly uninsurable on the private market.

    Here are fun insurance issues I have encountered:

    -Ineligible for private insurance. Luckily, most companies list the pre-existing conditions that lead to total ineligibility so I don't have to call them all up to determine this. (MS is pretty much an automatic disqualifier not just because of the cost of the drugs to treat it, but because they can't get cute and exclude it under pre-existing conditions clauses. Any trip to the emergency room, for instance a tumble down the stairs, could be MS related so there's no simple way to exclude it.)

    -Drugs cost 15k-25k/y. Even when I got off the crappy student plan (capped prescriptions, including such drugs as these, at 2K/y) I found myself in a crappy plan that simply didn't pay for any injectable drug that wasn't insulin. Eliminating the vast majority of biologicals. Nice.

    Actually, that's pretty much it. When you can't buy private insurance period and job related insurance finds ways to say "screw you", you're pretty much out of ways to get screwed by the system.

    Anyways, I'm incredibly lucky. Minimal progression, awesome spouse, clinical trial and now a job with actual decent insurance. This probably puts me in the medical 1%. I so desperately want to punch people when they start talking about how evil "Obamacare" is and how great the private market is. Fuck you, Mr. I've never had a health problem in my life except a prescription drug addiction facilitated by my personally chosen Drs. Fuck you "free market solutions" and vouchers.

    Thanks for sharing your and your wife's story. Give her a /hug from me and thanks to supportive SOs, friends, coworkers and all!

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