Month: September 2020

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Changing Gears

I was in college when I had my first major/obvious exacerbation.  I’d had some symptoms prior but I’d brushed them off as nothing. This first exacerbation was about six years before I was diagnosed, and the result of testing was my doctor telling me we’d ruled out everything *but* MS, and she strongly suspected that’s what was wrong, but I couldn’t afford an MRI or further testing at the time. I recovered, and she told me I may just never have an attack again, and to hope for the best.

I graduated, moved, and was working in my field part-time while looking for full-time work in the field when my life went sideways.  A lot of things went really wrong at the same time, my stress levels hit an all-time high, and about the point where I thought it was over and I could “get back to it”, I had an attack. Then another, then… a prolonged period a ridiculous amount of testing.  MRIs. A lumbar puncture to confirm, then a month-long recovery from the LP. MS went from being “suspected” to “confirmed”.  I was put on Tecfidera, changed neurologists, switched to Gilenya, had breakthrough activity, then switched to Ocrevus (currently).

My degree and work I was pursuing were in a field that could easily lead to “crunch”, 100-hour weeks. Layoffs, high stress, high burnout.   I knew that well in advance before I started pursuing my degree, and I wanted it. At the time I “knew” I could handle it. […]

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MS Reclamation

Social Media Chronic Illness Gatekeeping Rant

Do you remember when you first had symptoms of your disease? When you visited three or four, a dozen doctors and specialists, had referrals from referrals, had a gallon’s worth of blood draws? Maybe your doctor referred you for therapy, prescribed an antidepressant because it was “just anxiety”, or “just depression”?

Do you recall how dismissive your friends and family could be? Do you remember that moment when you found the right doctor, that one person who believed you? When you received your diagnosis, and felt validated, or even relieved, that you finally had an answer?

You likely understand that your experience is not the only experience of all of those diagnosed with the same disease/disorder you share. Your immune system decided you don’t get to walk this week, but there’s a wonderful woman in your support group who’s blind in one eye and struggling to find the right words, it’s all awful and you can see and understand what’s right there in front of you.

My question is, why would you feel like the pharmaceutical companies, your doctor, and your personal experiences have given you all of the answers? That you completely comprehend the full extent of this condition and possible side effects to related medications? […]

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Nerd

2020 Reading Goals

I’m posting this here so I can hate myself if I’m not still reading when I come to this site. It’s self-nagging, “accountability” (ugh), and hey maybe a couple of fun book recommendations. Maybe not, I have a lot of non-fiction I hope to read before this year is out. As it’s been a while since I’ve read prolifically, I’m only going to hold myself to a minimum of one book a month. […]

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MS Reclamation

My Supplements, for MS.

Fair warning: I’m writing this while exceptionally tired,  with an insurmountable mountain of anxiety and fatigue. I apologize for any confusing language, wrecked grammar, emoji, or random segues in advance. This is likely incomplete and will be subject to edits later. Any updates or changes to my routine or experience, I’ll attempt to post here. I hope I clean this up later.

I need to take stock of what I’m taking, why, and hopefully cut back on this stupidly pricey adventure. I figured I’d share in case any of the referenced material could help others.

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