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. […]
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. […]
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? […]
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.
There are loads of articles that explore this subject, but I think people are missing some elements. Talking about what NOT to say, how to say X.
I don’t think these are wrong, especially not from the place the narrative is coming from, but I think it’s important to remember maintaining a relationship relies on both people involved.
I saw read a story from a well-intending friend of a PwMS, who is struggling with ideas on how to offer their support – without seeming condescending or reminding their friend that they’re ill. Attempts to console their friend were rebuffed, friend expressing that the well-wisher can’t relate to their experience.
Guidance for PwMS from their neurologists seems to have been “carry on per usual” with COVID guidance, which for a lot of folks seems to mean to do them as they normally would, which I completely understand the want for, but please, stay aware and cautious out there. I’m seeing so much misinformation about the Anti-CD20 monoclonal antibodies (mAbs). Predominantly: neurologists telling their patients there isn’t cause for exceptional caution with any DMT. With a couple of therapies though, this might not be precisely accurate.
Per the Mayo Clinic, “Risk Factors” for MS include:
White people, particularly those of Northern European descent, are at highest risk of developing MS. People of Asian, African or Native American descent have the lowest risk.
Let me go off script a moment and be blunt here. WE KNOW THIS IS FALSE. If that looks like I’m shouting, not sorry: I am. I’m angry and heartbroken. This is where I end up every time I think about it. I’ll try to be civil for the sake of providing useful information and spreading awareness, but this is injustice.
In an article titled “Multiple Sclerosis More Common In Black Women Than White” on Medical News Today:
“Of these new cases, black patients had a 47% greater likelihood of MS compared to white patients. Results also showed that Hispanics had a 50% reduced risk compared to white patients, and Asians had a 80% lower chance than whites.”
I’ve been trying to find anything about the oil slick dryness situation I have going on after a pulse of prednisone and a quick browse through the internet shows thin skin, dryness, bruising are all side effects, but it’s a bit glossed over in favor of the severe side-effects. This is entirely fair, all else considered.
Still, when I feel awful but I’m somewhat functional, I’d rather at least feel okay about how I’m looking, if nothing else.
I don’t know if I’m the only one out there that feels as if prednisone is a whole-body desiccant (I get the range of “extreme thirst” side effects), but I’d like to share what’s been working for me in the event this might help anyone else. I know for me these “temporary side effects” have an impact on my skin texture and how makeup wears for at least a month after going through a pulse treatment.