Wednesday, March 23, 2016

HAPPY BIRTHDAY!! And grump, grump, grump...


My nephew turns 25 today! I'm glad he seems to be in good health, happy, a good man. Because his aunt is decidedly not.

In honor of MS Relapse Awareness Week, I apparently have decided to deal with my first real relapse in probably 7-8 years. LEGS aren't carrying me, lots of crutching, cane, even wheelchair use now n then since March 5. Doc has me in the old high dose cycle of prednisone, and I'll be trying Tecfidera as soon as the PTB of insurance and pharmaceutical companies do their magic.

I'll admit I'm quite frustrated, annoyed, bummed... At the same time this is going on, our admin is out still waiting to have her baby, summer work is revving, and I have three grad courses I'm trying to do. I didn't really feel anything coming on, but holy cow, I'm just not in a great place with this. Maybe it's just I feel I am so much older and I've been so much more tired.

So f**k you, MS. I want no orange butterfly badges, no attagirls, no questions, frankly. I think I'll just wear a shirt with an image of my two most massive lesions from 2008, on either motor cortex. Sigh.

What a horribly demented disease for someone in education, required and well trained to use a pretty fast mind to have. I mean, honestly, what a terribly demented disease, period.

Monday, March 07, 2016


So for two years I organized a zumbathon to raise MS funds in March. This month, no such plans, but I find myself hyperaware of my MS.

I'd been doing fairly well, got off Plegridy because of really uncontrollable side effects, still taking adderall to cope with fatigue. but the last couple of days the fatigue has ramped up into lassitude and I can't even drive and sing along to music in the car because I get SO tired!  Walking is ridiculous, as it takes a huge amount of energy to go anywhere more than about 20-30 feet.

I'm trying crutches now, but they are jarring and it's still quite tiring.  Of course, having a job that requires thinking also wears me out. We will see if I make my night class tonight.

Ironically, I'm revisiting disability as subject for research, spurred by rediscovering Lionel Barrymore. He was in a wheelchair in films from about 1938 on, and did a whole hoop of films prior to his death in 1954.  I've loved his brother John since probably my early teens, but hadn't paid much attention to Lionel except in Grand Hotel until recently. I have been youtube-ing films and find myself fascinated by him. Quite a good, interesting actor. So I'll be looking closely at Key Largo (1948) and how his wheelchair plays a role in different ways. Already know another scholar has done wheelchairs in film and even got an nice response to my email to him. That was quite kind, actually.

I've already worked on John Callahan and Dr House, and I find it funny I knew about but didn't make the connections with Dr Gillespie in the Dr. Kildare movies of the 40s.  Once more, Lionel Barrymore as Dr G!  It's nice to have my brain focused on something specific. I do love research.

But OH, how I'm hating this terrific weakness/tiredness. We will see if the dr is up to seeing me or if I should just invest in that energy-saving wheelchair thing.

(Bogart, Bacall, Barrymore in "Key Largo", 1948)