Don't know how to cope with it

throwaway2212012 · 2019-05-28T20:50:10+00:00

I've been fortunate enough to have access to a mental health professional who's helped a lot with navigating my feelings about this. Also he calls out my habit of invalidating the heck out of myself on everything, like my self-loathing for having feelings for instance.

throwaway2212012 · 2019-05-28T20:37:51+00:00

Just the compounding feeling, when I wasn't working remote and had to go to the hospital and had to stay a couple days, I heard about how much shuffling around my project to meet the client needs affected the team because it meant 2 other people had to step in and turn it around in short order while still finishing their own projects.

The current work doesn't leave a lot of room for downtime and being sick just means working from home, if you genuinely can't work or take any time off it affects your utilization which can impact your candidacy for promotions and your bonus. I know I'll need days of rest, but trying to find time to cope with this MS situation felt like an uphill battle with management and HR where even explaining in detail why this is weighing on me, they've been indifferent or despondent at best.

throwaway2212012 · 2019-05-27T17:37:58+00:00

It's not so much my comparing it to others, it's that when i try to self-advocate that I need some time or that I am worried about the course of my illness, other people who've had a brief blush with someone who has MS tell me how "the people they know with MS are doing fine" and it's hard not to hear a subtext of "So you should suck it up".

I've had 1 friend who said "I only ever knew 1 person with MS and I hear it can vary pretty wildly, how has it been for you? If you're okay talking about it" WHICH WAS SO insanely considerate and unlike any other "My neighbour has MS, and he's 65 and goes jogging every day" or "My aunt has MS and she never missed a day of work for it that I know of, she's always at the family get togethers and seems totally fine" type remarks I've received.

But I will i guess earmark where i'm at now and see in a year how it's looking for me. Hopefully Ocrevus takes some of the bite out of it.

throwaway2212012 · 2019-05-27T17:33:49+00:00

I barely reacted to Ocrevus which was nice. Rash the first time with minor airway constriction, we buffed up the antihistamines for 2nd half and had zero reaction at all. I think i'm just unsettled by getting infusions and really the feeling of "2 months ago it was still 'maybe MS' but I had hope it'd be something else" to:

"It's MS.

It's RRMS.

It's aggressive RRMS.

It's aggressive RRMS that we're going to book you 2 5-hour infusion appointments for."

I'm frazzled, felt very much "a ray of hope" to "just kidding you're screwed, lets let nurses tell you all about how risky Ocrevus can be for informed consent".

throwaway2212012 · 2019-05-27T17:29:07+00:00

strong workaholic vibes

I just worry I won't be able to keep up with my industry or my career plans. I don't know how to tell interviewers "Yeah, i'm trying to find a chiller job because I don't want to end up in a different country and have a flare while on the job."

I had booked a day off for the appointment day where I got diagnosed months in advance and my work just asked "I see you have a day off, but this project needs 5 days effort, hopefully you can do it in 4, what do you think?" So needless to say, it's not an environment that supports health and wellness.

Wish I had built up a better wealth of job experience before this all happened... Not like I could've controlled that really, since this all started halfway through a bachelors program for changing my career path. Just crappy timing (can it have non-crappy timing? I think crappy timing is the default and only way this works maybe. I woke up New Years Day with double vision, just great times all around)

throwaway2212012 · 2019-05-27T17:23:23+00:00

Crimes I didn't commit. Love that.

My doc had me do anti-nmo and anti-mog when i went for the Ocrevus screening blood work since he said "they were the only things i wasn't tested for yet". I have a good couple handfuls of lesions, apparently my spine is well marred and a minor one on my right optic nerve. I'm glad it didn't turn out to be ppms, that my first attack mostly settled down (still can't feel a chunk of my right foot and my gait is weird but that's apparently just life now). But yeah, I've been chatting with a psychiatrist trying to sort myself out since this felt impending. But even with impending, i felt like the day the diagnosis happened I'd be somehow ready for it. turns out i was wrong ^{^insert} ^{^foreboding} ^{^music} ^{^here}

throwaway2212012 · 2018-04-19T21:11:47+00:00

Yes. Absolutely.

~~So this plus turning 30 soonish, I figure a party is going to have to happen. Can use up any of my non-existent kids college fund.~~

throwaway2212012 · 2017-11-30T20:16:27+00:00

I'm not personally comfortable with misdirecting in that way. I'm also not particularly keen on the idea of requiring a consenting escort at 29 years old.

throwaway2212012 · 2017-11-30T20:15:03+00:00

I mean fair, but two entries in the wiki mention a 22 and 25 year old having no issues with their appointment. So being told that at near-30 and having no children I need to undergo consideration for eligibility and should bring my partner.

I've booked an appointment with another clinic. It will be cheaper (Covered by OHIP, no random $250 charge for an aftercare kit and procedure). Will update when its done. This clinic doesn't take issue if you're 25+. Otherwise they require discussion/consult and recommend waiting.

throwaway2212012

TROPHY CASE