Chronicles of Life with Multiple Sclerosis
I wish your to-do list would disappear when you’re feeling your worst and the cognitive fog is like a white out blizzard. Or maybe I just wish I knew how to stop trying to do things when I feel like my brain is suffering from white out conditions. heh. I never learn my lesson and I always try to do things anyway and it always ends up just like it did tonight: I fuck everything up 1000x more than they were and end up creating tons more work for myself and/or ruining something I’ve been working on forever. oops. heh.
Granted I’ve been in a steadily worsening flare for 3+ months now but I should clearly be demanding steroids not just “pushing through” in ways that only lead to further stress, disheartening events, and later worse symptoms. Thats just stupid (I’m winning at stupid!). Seems that in this state even the good things go wrong.
Tonight my attempt to save my portfolio, after what I realized (even in mental haze) was not just *my* malfunction but actually my back up drive failing, ended in disaster. Not only are my back up files gone but I managed to not save but delete the entire wordpress site and the msql database associated with it (aka everything). I tried restoring it but dreamhost says there are no backups to restore from. Thankfully I got some text back from the wayback machine but really thats sorta crap without the dv files. I can reshoot images of my more recent sculpture work.. but my senior thesis from emerson (actual 16mm found footage spliced together then digitized with found audio) is not so easily retrieved. I don’t have the equipment to digitize again.
I’m so pissed at myself since this was all in an attempt to back up and update my portfolio so I could apply for an open auxiliary position at a co-op artist studio near my home. I thought it would be a really good thing for me, motivate me to get involved, have some accountability, have the ability to show work in a physical setting. heh oops.
Add to that the fact that I’ve been on the phone with SSI, federal and state, for about 8 hours a day for the the last 3 business days (and will be again starting tomorrow) re: a potential job. The people I’ve been doing side work for, that have been paying me via pay pal, really like my work. They have a new investor and he wants to make it official (despite my protests that its more complicated for me than that) by hiring me and giving me steady hours. Theoretically? AWESOME. They like me! they really really like me! For a workaholic like me its a dream come true!
Well, seems that even if I find a job like this, that lets me work 10 hours a week with the flexibility of working when I feel capable (cause I can’t do steady hours ), the net 400 dollars a month (thats 10 dollars an hour before taxes so wouldn’t actually be 10 dollars an hour) disqualifies me from disability income and reduces my health benefits by 10 fold.
I don’t even know what to say to that. I guess I should be grateful. I mean, that extra 400 dollars a month (if we pretend it is actually 400 dollars since in reality taxes will make it at least 1/3 that if not less and I love taxes don’t get me wrong) would put me at 1100 a month which clearly means I’m rich and don’t need any help! I should be able to support myself on that, pay for food, rent, utilities, gas to get to and from what are at least 2 doc appointments a week, feed my tortoise (or should I not be allowed to have a pet even an emotional support animal), all easily even if my monthly copay for copaxone goes up into the $100s and its just one of 10 prescriptions I fill every 28 days. I don’t need to eat anything other than ramen noodles, clearly I shouldn’t expect to have internet or TV now that I’m chronically ill (despite the fact that its the reason I’m homebound forever). These are luxuries I’m feeling far too entitled to. If I can try and pay for those things then I should be able to have a full salary and work 9-5 even on days I can’t see or walk! Its clearly my fault that the 6 years I worked at a research institute right before my symptoms got undeniable didn’t pay into the proper federal funds that would allow it to count towards regular disability. It doesn’t matter that I’ve been working since I was 15
:::bitch-rant-moan-im still pretty damn privileged-still grateful-also stil lbitchy::::
Anyway, its been a long week, 3 months, year etc heh and tonight I feel like throwing something and yelling FML. I’ll get some perspective back tomorrow.. It could be so much worse and so many people close to me are dealing with so much bullshit I am humbled by them and feel guilty even bitching a little.. cause really this isn’t “new” per-say. Its my life. Forever and ever. Still, I just feel like I’m going to be “head barely above water” forever simply because I had the wrong job and got diagnosed at the wrong time. I hate feeling stuck and I hate when my attempts to pull myself up by the bootstraps end with me on my ass feeling stupid and useless. Eh. Lamesauce.
Anyway, hope I wake up with perspective (that is not induce by any traumatic incident) tomorrow. If you managed to read this far by accident, masochism, and/or boredom well.. I can promise you this: you can all feel safe knowing that I’ll be on the phone with gov. agencies for so long tomorrow/this week that I won’t have time to post long whiny incoherent posts like this for at least 5 business days. :-D
I know I’m debbie downer a lot, and whine constantly on twitter, but I’m alone in my apt and need to voice this (one more time before I do either of the things I mention at the end of this). I just went out to my car to get the heat humidifier I keep by Zoya’s terrarium in the winter, since its getting cold and her substrate dries out so quick. Anyway, I’ve been in a tone of pain the last few days so, despite my general attempts not to out of stupid pride, I’ve been using my cane even inside my house. So I was using it just now when I went outside where landlord & fam. were talking to some teenage trick or treaters (their youngest son is a senor in HS, I believe, so they were prob his friends). One of them asked who I was supposed to be and where the rest of my costume was because I was hobbling with the cane. My landlord, knowing my situation, tried to butt in and stop them but convo ensued anyway. I smiled and kept going, heard them discussing me on way to and back from my car, then got stared at as I passed on my way in. I know they felt bad but I feel worse. I am wishing I was tougher cause I’d pretty much like to drink myself into a stupor or cry myself to sleep…none of which are good ways to respond. I need to brush it off. trying to brush it off.. if I vomit it into the universe a few times it might go away right?
I know they meant no harm but this was the most blatant face to face with this sort of thing, at a time when I was already irrationally depressed over a stupid holiday I shouldn’t care about but still made me wish I was ‘normal’, so its really getting to me. think I should back away from the internet but then the silence will smoosh me.. and not into a muffin like I want to smooth all the snuggly animals and cute things/ppl I see.
I need to remember that I could be crying about having no power, no life support, no home to go back to, a flood that destroyed everything.. cause with that happening around me I need to bitch slap some perspective into my brain.
Still feeling like crap and walking seems pretty impossible today. So? no Halloween outing for me. Boo. Love the opportunity to dress ridiculously in public.. oh well. Instead I’m watching netflix in my costume. I’m “Girl that got hit in the face by a bat” Its funny because it happened!
Since I can’t make a fool of myself outdoors I figured I’d post this picture of myself that will be archived for mortification even after my death. Enjoy.
Also? Thankful thats all I have to whine about today.
HAPPY HALLOWEEN EVERYONE! Hope you’re getting drunk and acting a fool today instad of at an inappropriate time like during a hurricane when people are dying.
Is anyone else on Gilenya have side effects like EXTREME fatigue? cog fog that effects vision, and random tingling in legs and arms, and back and neck pain increase? I took a day off and felt better, but today I feel the same (no…). Gonna take it now. Maybe the symptoms were psychosomatic or the combo of the flare up I’ve been having and the heat on top of everything else? just don’t know. but that one day of functioning was sorta nice. ugh. It feels like its midnight but its not even close. stupid body.