New PML case in Rituximab use

Well, this is a little scary-- my clinical trial coordinator had to call all of us, since Genentech announced a third case of PML (progressive multifocal leukoencephalopathy, a usually fatal brain disease) in a person taking rituximab for rheumatoid arthritis. They're just making calls to let people know, even though the study I'm in is a modified rituximab one, using ocrelizumab,a "humanized" MAb. As my coordinator put it, this makes 3 cases out of 100000 or so.

I like those odds. But it is a reminder that these drugs are WAY powerful. alas, not treating my MS is not an option! So tomorrow, back to PHX, more blood work, more MRI! Joy!

Click on the post title for the news on the PML case.

Snort snarl grrr...

Another middling day of a middling week. Still frustrated about health care as a whole, but do have an appt on Thursday up in Phoenix, so at least I'll be able to get copies of all my MRIs.

Unfortunately, my legs are getting a bit weakish again, tho lately after too much time on my feet. I have started working out again, so maybe I can blame that (haha). In any event, I must say the year thus far has been pretty sucky.

It's most definitely a snarl-inducing life, lately, and like Joe Walsh says "I can't complain, but sometimes I still do". Well, I have a bit more to whine about-- I told some of my students recently to stop whining. They are still too young and healthy to whine too much (at least about that).

However, at least I get out of the area for a day! YAY!!

Rough week...

Whiiine
Legs hurting again, stupid head cold-thing going on which is stopping up my ears... and tot op it off I have 2 sets of papers to read, and I'm REALLY exhausted! I think I'm going to bed...

Weekends are hell

Kind of all cold-ish and weak this weekend, so didn't get a lot of stuff done. However, sometime over the weekend our house was egged (2 eggs), and one broke a window. Now THAT pissed me off. Interestingly, there are only 2 kids of egg-tossing age on our street, so what did they think we would do, not guess? Them guiltily not walking past our house today to catch the school bus, but going around the long way, kind of brought it home. We had to do a police report on the off chance our insurance will pay for it. What a pain in the ass.

Positively, I'm learning to make a Better Life through Pharmaceuticals. How did I manage so long without them?

Wallace and Gromit go Crip!

Aardman Animation paired with the Leonard Cheshire Disability service in England to create "Creature Discomforts", featuring various animals and critters with disabilities speaking on the issue, voiced by people with disability. It's pretty damn funny, but also, in Aardman fashion, gently prodding sensibilities. My favorite I think is the walking stick insect with a cane... which is actually another walking stick insect!

I think it's fair to say the Brits did good on this stuff...

Aard-dog

Wildlife and us

Rocky Raccoon is pissed

So I went into major hate-human mode today, as I noticed a tiny mouse caught in a school glue trap, still alive, terrified, starving, and really frankly in misery. I know all things have their place, but come on... "gee, I know, let's torture and starve this creature because we CAN, because we lack the courage to put out traps that would actually kill them quickly because we don't want BLOOD all over, gee... they're vermin..."

Come on, it's a mouse. A tiny one. A living critter who feels fear and pain, and while I can't save everything nor want to, there has to be better ways for humans to rid themselves of "undesirables"

Which brings me back to crips. Somehow I feel for the "undesirables" in the world. I do. There's so much blind ugliness and ignorance in the world. I made my students try checking for accessibility with a walker, crutches, and a cane recently and they certainly came back with more open eyes. Maybe they will stop and appreciate their mobility, and they definitely see the campus with clearer vision. Will they remember the experience beyond a week? I dunno.

Oh, the mouse? I freed it carefully, threw the sticky trap away, and cursed the hell out of humans.

The crunching sound means it's hurting!

After a long, long weekend of dodging grading and stuff, I noticed near the end of the weekend that my right knee was feeling weakish. Not too uncommon, but then... oh, ker-UNCH!

I put my weight on my right leg last night to grab something and heard this ridiculously loud snap, crunch, and crackle of my kneecap area, which was of course QUITE painful. Since then.. sigh, I've been limping and babying my right leg. I have no idea exaclty what it is, if it's MS-related or not, but DAMN. Perhaps it's just workout related, since I'm back on the gym trip, but I don't think riding a recumbent biks is all that knee-threatening. Then again, I can't imagine MS causing my knee to make crunchy-shify sounds, like the patella slipped or something. It hurts when it's extended fully. Oy.

Pain pill time!!!!!!!!!!

LOLcat for the weekend

Owie Kitteh

Sigh... end of another work week for me, but lots of ancillary stuff. And WHY oh WHY did I think I should use the leg press at the gym? Talk about a booboo.

Oh well. Hopefully Bear can kiss it better. Or alcohol. Yeah, that's it...

The finest in possibly-illegal gimp-cessories part 2

This is my brain WITHOUT drugs
I had this cup made with a single image from my first set of MRIs in December, when they found all the Xmas lites in my head. This one image has always just fascinated me-- perhaps because the lesions are so damn BIG. And interestingly, whoever I show this mug to thinks it's 1- beautiful and 2- "so cool!"

Go figure. They still say that when I tell them it's MY brain. Oh well. Perhaps they are not using that part anyway.

The finest in possibly-illegal gimp-cessories

Mystic 8-ball gimptastic spinner

Well, I'm not sure if a spinner is illegal in AZ (I know they are in about 40 other states if they're after-market), but I really wanted something to help me with big turns in my CripMobile (my Toy Echo), so I figured I'd get a cheap spinner for my steering wheel. Of course, the only one they had at the closest auto store to me was, of course-- an 8-ball. Seen above, it has been a joy, if a little bit ghettofabulous. Of course, I took my Bear's 8-ball valve caps off his wheels and stuck them on mine, then we got an 8-ball shifter knob... and just stopped short of the fuzzy 8-ball danglies for the rear view mirror. Phew!

I am not sure what exactly I will say if I am stopped. I have yet to determine if they are illegal in my present state of residence. I suppose I can show them my id card from Roche that identifies me as a clinical trial participant.. but then again, they'd have to understand that... oh dear!

Either way, I have to say it is a great tool to cut down on the strength I have to use to turn my steering wheel. OK, and it's a bit of the totally cool, too. At least I didn't get the chromed one I found later!

The outing of the gimp

An odd thing happened this weekend, tho now that I've had time to think about it I believe I have insight. This last Friday was my bday, and it was a good but sometimes bittersweet one. i think I missed my friends badly, and my little boy-cat Tommy Lee very much. He was almost 12 this year when he died, and it was and is really painful. This was my first bday in 12 years without him, my 2nd without my mom, and my fourth without most of my friends around me, since they all live in more civilized areas. Plus, I just think this year aged the hell out of me.

But it was okay, and the weekend was mostly fine. Sunday the wee church my bear and I go to (UCC, quite liberal) even though I'm not Christian and he's Episcopalian started up again, and the first thing Bear said to the pastor was "You weren't here when they figured out what was wrong with Sam. She has MS."

Now, THAT was weird. I have no idea why he outed me like that, and being that MS for me is at present a mostly invisible disability, it really was an outing. I was asked to present the info during the "Joys and Concerns" part of the service later, and I gave a short summary and said I was pleased no one was looking at me like I would be dying soon. And truly, no one was looking at me that way. Most asked polite questions and said I looked pretty good. So as far as outing goes, it wasn't too bad.

But I couldn't figure out why bear had even mentioned it. I am not sure he knew either, and I asked, and he said he wasn't sure. Later, at lunch, he said he thought it would be good to have prayer, support, etc, for all this. I actually think, like some partners of folk with MS, he does not have a very good support system here and when he worries or frets are just wants to vent to someone about my mood swings and pain, he has no one really to talk to. I can understand that, but there are times I also think he might be a thickskulled guy type. I am not sure.

Of course, the truth is that there are not any good friends here-- most are stuck in their lives of children and work, and as a whole I think the area itself isn't that social. I have gone out more with former students than with colleagues, which is different from my last job. The truth is, this place sucks if you have MS. I'm so sick of having to always build from the ground up anything socially progressive, or even friendly, hell. Feh.

Now, of course, I think I should fly an orange flag (and who picked that color? Hideous!) and stuff, but still-- what does it mean to be a "proud member of the MS community"? It's not like any of us would volunteer for the task of living with MS and it's not like we DO choose to get it. I certainly won't let it get me too down, and i will set misinformation straight, but if I let it define me completely it seems simplistic and not helpful to me. I can certainly see where visible disabilities have and show solidarity against the BS of the world. but us invisible (sometimes) gimps? half the time I just wanna get to wheelchair-phase so I can get over the long-term stress of gradually falling apart, and other times I wish I just would get over it all.

Crips ahoy!
House on Wheels

Forget the blues...

...how about that "dammit, what is WRONG with my legs?!?" dance.

Was planning to go to a volleyball game at my school (they are a GREAT team), but in the middle of dinner before hand, I felt like my legs just decided to rebel against their attachment to my body. In short-- my legs mostly stopped working. I was only just able to drive home (no sitting on bleachers for me) and took a cripscrip muscle relaxant which kicked in after a couple of hours.

Now, I know not every pain can be blamed on MS, but HELL... if this wasn't electrical misfiring in my brain, I have no idea what it was! I am in cane-mode today, still weakish in the legs and wobbly. It also seemed to affect my right hand, particularly the thumb and first finger. Even as it's getting cooler here, relieving some heat stress, the wee out-of-the-blue flare-ups and short circuits are really disconcerting, and also a reminder that I shouldn't buy that big scooter just yet!

Grr. What a pain in the royal ass. And tomorrow is my birthday-- first official MS one. Yay. Maybe I'll bury my head in articles for this paper I wanna write and hope my highlighting hand doesn't go out, too.