Friday, December 25, 2009

Deity-of-choice bless us, every one!

The peaceful sleep of the innocent insane kitty at Christmas
Well, here it is, the American holiday of choice, for the most part, and it's bittersweet. I miss my baby boy cat, who would have spent his 12th Xmas with me. It hurts.

On the other hand, I have my seven furkids, my SO, and the survival of almost an entire year with an MS diagnosis. So yeah, bittersweet. I try to remember the spots of brightness, not the spots on my brain. I am encouraged by medical developments and happy with my own health in terms of MS (but the days off are taking a toll on my diet!:p).

We had a nice Xmas, with lots of cheer and happiness and some really cool gifts and mad kittens racing about, well, madly and running into things. We have stockings and lights and a Charlie Brown Xmas tree... and well... it's not bad at all.

May all have love, happiness, kindness, and peace and joy this season and always!

Friday, December 11, 2009

Tuesday, December 08, 2009

Down to the wire!

Well, finished teaching for the year, and am happy. We're in our finals week and overall it's been much less stressful than last year! Of course, around this time last year I was in the middle of a full-blown relapse from hell and coming up on surgery to fuse vertebrae in my cervical spine-- man, I can remember that! Actually, today someone mentioned I looked really good, ready to "lift weights" and all that. I guess so-- but it means I must have looked like hell on toast last December. I finished my grades in the hospital. Joy!

So this December is looking better overall, and I have to say i think the ocrelizumab is doing good stuff for me. I don't think I'm ready to go out and try the CCSVI stuff, esp since I can't figure where I personally would get excess iron from to begin with as a 16-year vegetarian. Hmph.

Here's hoping all goes well for finals!

Tuesday, December 01, 2009

Counting down the days

Here in desert Southwest, we're winding down school semesters and stretching ourselves for a snowbird-infested nap of sorts. Practically speaking, this is a good time to unwind, even if not the best place for me. Ah well.

The old MS dance has been pretty quiet lately, though I still wish I lived closer to my doc since this first year of MS has been a little unsettling. OK, a LOT unsettling. On Jan 13th of next year, I'll have been officially dx'ed with MS for a year. I keep telling myself I should have taken better notes, so I could appreciate the year more, but frankly-- I think it would be a bit of a downer. So I'm going to look back on it in January, have a wee cake, and really see what it feels like to have made it one year.

Tgiving was fine, tho I don't eat turkey. Good wine makes all things well-- I can't remember, tho, if I should be drinking wine in this clinical trial! I'll be glad when all the holiday stuff is kind of done-- a lot of feelings of ambiguity and "feh"ness around here. The zoloft has helped take the edge off life, but still-- I think I need a vacation more than anything, and I don't know when that will happen!

Here's to the last week of classes!

Tuesday, November 24, 2009

New theory for MS progression/ treatment

The Venous Theory

As has been hitting the net recently, there is a newish theory of MS progression, if not causation, based on insufficient blood flow in the brain due to iron deposition there not being flushed out.

I admit it's intriguing, but one of the things I'm not getting out of the info yet is why the iron is there, and where it came from. I'm particularly intrigued as a long-time vegetarian, who clearly does not overload on iron like many Americans who eat red meat, etc. I'm glad the studies will continue, and if the treatment of improving the blood flow works for some people, I'm happy! Right now, I think it's one nice part of an horrendously complex issue-- why iron, for example? If more northerners get it, who maybe eat less red meat around the world, why that? Why not mercury from commercial fishing? Do people have insufficient blood flow in other parts of their body too? Is the heart involved? I have "mild mitral insufficiency"-- is that part of it?

GAH! These are times I wish I'd gone to medical school rather than do the "easy" PhD. (Caveat-- PhDs are for people with mental issues who like pain. Honest-- at least the real ones you don't buy off the internet.)

Will follow to see how this goes along!

Wednesday, November 18, 2009

It's definitely not lupus...

...and not the flu, either. Arg. So far I have managed to miss the flu, I think, but lately my left ear has been hurting and my left (and only left!) tonsil is swollen and sore. It's like the ultimate headcold, since I can't get the nasal congestion to leave my head. The nice nurse at my school took a look, and yep, the left eardrum is slightly bulged, so I am wondering if I have a lovely ear infection coming. I hate this stuff.

At the school as a whole, while flumania is down, allergies are running rampant. I don't think I have allergies, but the fine silica sanddust is EVERYWHERE here. I see why bedouins tend to cover their faces.

MS wise, all is mostly stable, though I do wonder if the weird shocklike headaches I've had lately are MS related or just tension issues. I wish massage was indicated for MS!

Hope all are well!

Thursday, November 12, 2009

Real life MS cell news!

Anyway, the link above is about a realtime observation of T-cells leaving blood vessels, which is really freaking cool. Between that and new observations that abnormal blood flow may have a hand in MS, it's been an exciting couple of weeks around here.

Of course, one does wonder if there's any money around for research... AZ is seemingly going to be the next California in terms of being fiscally broke (morally is a whole other thing..)

let's see how long we last here now.

Monday, November 09, 2009


In short, a deadly dullish kind of week or so. I think the MS is starting to screw with my swallowing, which is always fun. On the up side, I am ok per my last MS doc visit-- but on the other hand, for the first time I actually saw hand tremor during my neuro exam. And that has frankly been disturbing to me!

Again on the plus side, my EDSS score is still only 1 instead of 2, since I had no real fatigue. But tremor? MAN, that made me feel old! But as usual, could be worse. Could be raining!


Wednesday, October 28, 2009

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.

Tuesday, October 27, 2009

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!!

Thursday, October 22, 2009

Rough week...

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...

Monday, October 19, 2009

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?

Thursday, October 15, 2009

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...


Tuesday, October 13, 2009

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.

Monday, October 12, 2009

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!!!!!!!!!!

Thursday, October 08, 2009

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...

Wednesday, October 07, 2009

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!

Monday, October 05, 2009

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

Thursday, October 01, 2009

Forget the blues... 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.

Wednesday, September 30, 2009

The creep-up-on-you blues

Today has been one of those hectically annoying days, full of meetings of different types and work and more meetings... and work. And a sammich or two.

But it's also been a little insidious to me. I have been having a hard time sleeping so I finally took a scrip crip muscle relaxer to sleep, and did well. But the insidious leg issues began-- first in my left hip/ back joint, which stretching sometimes help, and then worse, the creeping sensation that my knees will buckle soon. Off and on I've been using my cane, more off in the last week than on, but the feeling of legs about to go is really a little-- well, depressing or at least off-putting. I don't like to be reminded of relapses and all that. I've been in a kind of relapse for a few weeks, mostly dizziness and weakness, and I'm thinking I got the dizziness beat now. The legs? Hmm, I dunno.

I don't think having MS makes me any more depressed than I had been, because I'm mostly over the "woe is me, I can't play football anymore!" I hadn't done sport in a long time, short of the gym. Now, I'm using my overtiredness as an excuse to avoid the gym, even when I'm not as tired as I used to be! Sick, isn't it?

But yesterday, when it was still over 100F here, the wobbly legs and my tiredness and the heat kind of brought me down. Sometimes I just wish wheelchair time would arrive so I could get a superfast Ben-Hur chair with photon torpedoes. I WILL be that pain in the ass crip!

But until then.. sigh!

Tuesday, September 29, 2009

R-E-S-P-O-N-S-I-B-- oh, you get it

you have no idea how much i wish Miss Ree would remake her classic (pace, Otis!) Today was an interesting example of how responsibility has become a dirty word. It's endemic to have excuses for anything short of fessing up with "My bad. I screwed up, and I guess I live with the consequences."

HA! *insert snorty sound here*

No one likes to be wrong, but given I have not taken advantage of my neurological nightmare to justify my screwups, I feel like too much is supposed to be forgiven without reprisals. I want to go somewhere where I can bury my head in books and pretend the world is full of responsible, hardworking people who believe we are all in this together. Kinda like Iowa City, but without the tornados, you know?

Ach. Well, perhaps I will start "coming out" as an MSer and see how it affects people's perception of my responsibility. Maybe I can claim I'm doing it for research, hey? *evil grin*

Saturday, September 26, 2009

Friday, September 25, 2009

dis studies review...

Well, so far the academic disability studies stuff is... well... overly pedantic and heavy on Deaf culture-- maybe because t is large. There's not much on humor or media yet, and there is a lot on feminist takes on dis studies. I am looking for more on visibility, but without the self-righteousness. I did read John Callahan's funny and sad bio, "Don't Worry, He won't Get far On Foot"-- he's a quadriplegic cartoonist of wicked sensibilities. He is quite funny-- sample toon: man with dark glasses and tin cup on sidewalk with sign that reads "Please help. I'm Blind. I'm Black. But I'm not musical." My black blind friend cracked up over that one

So between Callahan and House, I intend to enjoy this first article. I am sure eventually articles will appear by me using poco work, but for now-- long time, no article writing!

At least I'll also be able to revisit House on DVD--can I write the DVD sets off on my taxes now?

Thursday, September 24, 2009

fun with gimps!

So, bored as I am with my usual suspects (Women's Lit), I've decided to write an article on disability studies-- specifically, and befitting my gimptastic self, on how John Callahan and the creators of the character Gregory House are manipulating the able-bodied fear of the disabled for both humor and gain. it's complex, kinda, and I'm still articulating, but basically I'm going to a conference where the theme is "Voices", and the voice I wanna talk about is the snarky, funny, darkly comic one which through manipulation speaks volumes about the reality of disability or difference experience-- that not all fat people are happy, not every gimp is forgiving when you knock them over, not every blind person can sing.

We'll see if I pull it off, but I can say there's alot more snarkiness out there from gimps than I ever imagined, and I say-- cool!

Wednesday, September 23, 2009

The gimp-numbers: 939,000 and counting

Relatively new information (Ap 2009) of a study done by NM Center for Development and Disability and announced by the Reeve Foundation-- the number of people with MS-related paralysis is 939,000.


There are supposedly only 400,000 people with MS in the US, according to MSAA and NMSS. The Montel Williams MS Foundation rings in with 1 million.

Not to pick nits, but 900000 plus is significantly more than 400000. It's significant. And it kind of explains why so many people know someone with MS, or have a family member with MS.

939,000- and that's just with MS-related paralysis.

What about the people without paralysis but with MS, like me? And no-- no one officially tracks MS statistics, which is one reason MS still seems like some kind of "orphan" disease, rare and generally downhill all the way for people with MS.

Well, WE know that's BS. WE know that the incidence is higher than anyone wants to admit. WE know it's the most commonly diagnosed neuro disease in young adults, people with a lot of life to live. WE also know it sucks.

2 bills are in Congress now, Senate bill 1273 and House bill 1362, both called the "National MS and Parkinson's Disease Registries Act". I wrote both my sucky senators (I say sucky because they didn't bother to get back to me even with the autoreply) to ask them to support the bill, and may well follow up with them. That there's not already a registry is frankly horrifying-- I know NARCOMS has the MS survey for people, and they have quite a few registered, but it's not necessarily nationally comprehensive.

Perhaps the bigger number will shock people into more activity, and more urgent activity.

Then again, orange-colored pigs may fly... sigh!

OH- and today is the sixth anniversary of the day my Bear and I met! Good times... I love you baby!

Monday, September 21, 2009

The foofoo post

Okay! House is over, and boy... this season should be fun!

Actually, a lot to think about given the recent desire to think about the psychology of disability. I mean, it's odd to say much about it now, with not a whole lot of experience, but at the same time, ala the episode tonight-- sometimes the right time to reflect comes to you, you don't go to it. So to speak.

Disability is just that-- a distortion of lack of some type of ability or a ability-ness that is not quite "right". Nuff dancing. The gimpness for me is physical, compounded by the mental rags of post-PhD hood. What was nice in the House ep was his confrontation with the least rational part of himself, his emotional mind and life. Was thought- provoking. I took this away from it:

Don't try to fix everything-- you're not God. Just apologize (if necessary) and let it go.

Boy. Letting go is not my strength-- because hey, why let go when you can cling to archaic, pointless, and ultimately useless ideas?

I need to go to med school. Boredness is dragging me down.

anyway, new season of House rocking already! Paz.

Sunday, September 13, 2009

More health care thoughts, and one cool doc!

If possible, I've totally come to love my MS doc even more than I did before- dig this:
My doc, who for now will remain nameless, already had my admiration by having a MD and a PhD-- hell, I only have one, and it was the "easy" one (PhD). While farting around online looking for pics of my doc's hospital, I googled his name and clicked on "Images", and lo and behold-- he has an Olympic medal!

Turns out he was on Italy's 1992 bronze medal winning pentathlon team in Barcelona. In the individual pentathlon, he came in 5th in the world. I mean, what can't he do??! Besides, well, so far cure MS. Sigh. And he's quite nice andd approachable, too. Perfecto!

Anyway, the snarky part of the post is how screwed up the healthcare reform movement has become. While I knew it would not be easy, I didn't know or think it would devolve into even worse bitch slapping than the last go-round. I think the pres has shown himself to waffle a bit, and has allowed what I do believe to be a haphazard opposition to coalesce and make noise. I think the misinformation is bullshit and I believe that change must occur. it has to, for us to move forward in the country toward a greatness we have lost much of. Nothing, no health care system is all perfect, but I wish we could get our heads out of our asses and see that we're a bit broken healthcare-wise, and will keep getting broken. Why do we fear so much not just change, but investigation of our history and errors? What the hell is so scary? It's not like the Cubans are gonna invade with universal healthcare.

What bothers me a lot is just that-- we're ignorant sonsabitches, god love us, and sometimes we have a real hard time admitting we aren't number one all the time. I mean, just look at thhe upcoming world cup! The world don't revolve around us solely anymore-- and seems trying to cope with healthcare reform could help us really change so that we understand we're a global community, in a literal sense. Why not admit medicine is broken, at least a lot of the administrative side, and work on it with sleeves rolled up? That is, after all, the American way.

Saturday, September 12, 2009

I guess I should explain about that page title...

Well, first off I'm officially tired of political blogging. I've not posted for yonks, because although I care, I hit the "I have to take care of myself" wall. So i decided I'd do myself an the world better blogging about MS and life in Crip City.

I tend to defuse discomfort (and cause some, yes) about my cane usage by saying things like "Hey, can you hold the door for the gimp?" or "Gimp coming through!" Hence "Gimp Chronicles".

However, I have to shamefacedly explain "shade Stealing Crip" a bit more. Once three years ago BD (Before Diagnosis), Bear and I were driving to Lake Havasu in Arizona. I was psyched as we drove up to the parking lot for London Bridge and saw a shade tree I could park under in the nearly-empty lot, in the 127 degree weather. As I pulled up, I noticed it was a handicapped spot, so in a wry, and I promise to god funny moment because I would never say something like this twice I yelled "Goddamn shade-stealing crips got all the good parking!" Bear gawked, I gawked, and then we both had terminal giggles for a long time. It became a joke because he knew I wouldn't and didn't mean anything by it, bu was hot and frustrated by parking.

Of course, now I AM that shade-stealing crip! I don't flaunt the placard, and I do often forget to hang it-- it's a good thing my school cops know my car by now. I had never parked in HC spots when I was sans placard, and I used to get pissed off when non-crips would swing in there, or worse, non-crips would use their mom/grandma/dad's placard to shave a few feet off their walk to the store. Assholes. Oh, can I type that?

Anyway, I keep a sense of humor about it and frankly, I do enjoy some of the discomfort I cause. Because as I mention, there ain't no romanticism in a cane when you really need one. And now that GimpDoc on "House MD" has had a cane with the flames painted on it I had once wanted, I will now need to get something different airbrushed on mine. Right now on one of mine I have a dragon sticker. Bleh.

Crips ahoy!

Once more with ganas...

...first off, it's not yet easy to post with a tiny keyboard! But the cost of technology is high.

Lately I've been having more and more thoughts about not mortality, so much, as aging and wondering what exactly happened between 2004 and now. While this year has been a pain in the ass, brain, and legs, it's also been one of those classically thought-inducing periods of life where you reevaluate. But I think what it's resulted in is a lot of confusion about not only what I'm doing, but also why I'm doing so much of it in the same way.

I had a chat with Bear last afternoon about how I feel sometimes like my life is still not quite age-appropriate, that there's a lot of growing up in practical ways that I feel I need to do. It's hard to look at 39 on its way without wondering how I got here in one piece, and also to look at why it's so hard to make some changes and stop bitching about life being annoying. The number of years these last months have put on me since Jan 13th or so is really only now becoming clear. I don't think I've had any globally Zen revelations, but I've realized some real limitations. So long as the MS wasn't really bothering me much, which it hasn't for a while, I think I could kind of consider it a lesser-relative of Victorian swooning-- a kind of romantically stoic thing which really didn't matter because my brain is functioning relatively well (more about that later).

However, especially recently, it's become clear that there is zilch romanticism in the on-off use of a cane, of a crip parking tag, or of MRIs of holes in my head put there by something no one can cure yet. I mean, I like being different, but recurring vertigo and accompanying unsteadiness which brought out my cane after 2.5 months thanks to MS isn't anything "different" that is good for me. I have a really hard time remembering that there's no cure, and each drug works differently, and damn it, I can't predict it. I also have an impossibly hard time not just shouldering through life and insisting at all turns that "I'm fine." I never realized until now that I do actually need someone to lean on, that well-- once again, health and life shows me I just can't do it all all of the time. As a few people recall, admitting that isn't just scary, it's psychologically a real problem for me. It's probably not the disaster it was at Iowa, but still-- once more, I should find a decent shrink and try to articulate being both hypercompetent and really uncertain and scared.

See, the issue might be that I know too much but just don't know enough, and I hate ignorance in myself. It makes me a good and voracious researcher, which won't make me any money but makes me happy. While I am not worried now about my brain abandoning me, I find myself forced to think about a future where not knowing isn't curable-- no matter how many king's men and horses work on the problem. I guess maybe I'm tired of terminal "I'm fine"-ness. Either it gets okay, or the uncertainty grows before I have time to figure out how to deal.

Either way-- there's not much likelihood now of me checking out early, and karma may doom me to a long life-- and one most interesting and hard indeed. Wouldn't be my life if it weren't, I guess. Must be a lot of fun and contentment in a dull, average, placid life. Who knew I might want that one day?

Saturday, May 02, 2009

The MS Mambo, Swine Flu Schottisce, and the Life Limbo

Just little ol MS brain me

100+ days of new prez (where did that come from? even Anne had a thousand days!), 5 days of antibiotics (no not for Swine-ish Flu), and nearing 3 full months of MS officially for me (shoudl I have a party?). So how is it all going?

I will say this-- I am only glad I'm in AZ still because the Barrow NI in Phoenix fills me with confidence. Well yes, I'm on avonex now (1 shot a week! Yay! But intramuscular- waaaahh...) instead of trial drug, bu that will come, the MRIs are looking okay, and I love my MS crew up there. Big up to Mia!

Nationally, I can't say I'm filled with great honking excitement. I'm glad something seems to be going on economically and at least people believe something is happening, unemployment claims dropped suddenly, the water is still clean and hey, the man in charge in DC seems to look a LOT less like a deer in the headlights. will he get single payer passed? Well hell, we shall see....

Strep throat snuck up on me... seems instead of the N1H1--or is it R2D2?-- I got a good old strep infection that's knocking me out. Makes even more fun the weekly avonex shot. I felt like I hadbeen run over by about 8pm last night. But oddly, I still feel ill and rather weak. I have been so out of it thru exhaustion or illness that I hadn't been online since April 20th. Bad blogger/emailer/friend!

The merry dances life has been leading me on are really tiring. Unfortunately, I can't seem to bring myself to stop the waltz. "Oh life is better left to chance/I could have missed the pain/ But I'd have had to miss the dance." (cheesily, I admit it's from a Garth Brooks song). I hope the global dance isn't St Vitus'.

Sunday, April 05, 2009

Heartland moves hearts! Iowa clears path for samesex marriage

I lived in Iowa for 6 years, and really enjoyed it. Iowa City and the University of Iowa were always open for a challenge, and they really did a lot to dispel farm-redneck myths. I have always believed Iowans thought that what people did with their own lives, so long as it was consented to by all parties, was their own business in their own homes.

I am proud of my one time state, and hopeful for peaceful celebrations!
Go Hawkeyes!


Historic Victory for Marriage Equality in Iowa!
High Court clears the way for committed gay and lesbian couples to marry
Today the Iowa Supreme Court ruled in a unanimous decision that committed gay and lesbian couples must be allowed to marry in Iowa. Join us this evening at your local rally to celebrate this momentous decision! Rally times can be found below, following a statement from One Iowa Executive Director, Carolyn Jenison.
Statement from Carolyn Jenison:

I want to begin by saying how great it is to be an Iowan! Today, the Heartland proves again to be fitting of its name. The Iowa Supreme Court, in clearing the way for gay and lesbian couples to marry, recognized that love and commitment are at the heart of what makes our communities strong. As Iowans, we pride ourselves on our strong sense of community and fairness. It's only fair that two caring, committed people are able to take full responsibility for one another.

I grew up in the small town of Randall, Iowa. Like most kids, I had the same expectation of meeting that special someone to share the rest of my life with. More than the legal protections and security of marriage, today's decision is about recognizing that love and commitment are not defined by the gender of the participants involved. It's about couples like David and Larry from Urbandale or Reva and Ingrid from Council Bluffs -- couples that have stuck together through thick and thin, who have raised strong families, and been active in their communities. Today, the message the Court sends is that these families are worthy of the same recognition and hold the same value as any other couple.

As a lifelong Iowan, I have never been as proud of my state as I am today! Not only will we join Connecticut and Massachusetts as the third state to offer marriage licenses to gay couples, but Iowa will set the standard for fairness and equality in the Midwest. I encourage all Iowans, whether you agree with the Court's decision or not, to respect the important role that the court plays. While we may not all agree with the decision, I think we can all agree that it's unfair to stand in the way of someone being able to take care of his or her long-term partner. I invite those who disagree to engage with us in a conversation. I encourage you to visit our website at to read the personal stories of Iowans affected by today's decision. Moving forward, One Iowa will work tirelessly to see that marriage equality in Iowa is protected and valued with the same vigor that we pursued it.

I want to thank our wonderful partners at Lambda Legal for bringing this case before the Courts and all our supporters across the state. We would not be here today without your support and guidance. I also want to thank my staff at One Iowa. Our slogan is "together we are One Iowa" and I know our success is due in large part because of our commitment to work as a team.

Friday, March 20, 2009

Annnnd the update!

4 mos since surgery, which is healing well, and five shots into a MS control regimen. I've never shot ANYTHING into myself (sorry, all you radical types), so this was weird. The idea of the permanence of the MS came home the first time I had to self-inject. It is VERY odd to feel so mortal!

Of course, about the same time I started this stuff stem cells were released from their bondage and we shall see who they can help out. I'm confident in science enough to hope for some progress, but also know some researchers have already developed new ways to tease stem cells into change. I would suggest people who still have issues with it watch as their MRIs show huge gaps in brain tissue, some of which well might become irreversibly damaged.

Is it a brand new day for America? f**K if I know. The world has gotten both smaller and bigger, and more tiring. My favorite MS slogan now is "You can have my handicapped parking spot if you take my disability with it!" Or, more simply, "F**k MS."

My political interests have gotten smaller-- to the point I really want to move into disability advocacy (as I once did for HIV/ AIDS) and try to help people who are stuck in the crack of our crappy medical system. But please don't get me wrong. I ADORE my MS docs and nurses and all the fine folks in PHX who really helped get my diagnosis straight (it's not leprosy.. it's not AIDS... it's not coccidiosis...).

May all your days be merry and painfree and oh yeah, may you always remember the right word!

Tuesday, January 20, 2009

What a difference an MRI makes...

Hey gente--

things have radically changed for me, and not in a puerile political catchphrase way. I had been winding down in energy for while now, since last October, and right after my final probationary evaluation (yay, I did well),. I just about fell out of work starting Dec 1. Vertigo, walking weird, blurry vision, incredible fatigue... my neuro here had me take some MRIs, and number 1- I had a bulging disc in my neck pressing on my spinal cord and 2- I had "christmas lites (lesions, spots) in my brain. He advised me, "If you were my daughter, I would take these MRIs and go to Scripps or Barrow in PHX and go into the emergency room. It will take too long to get referrals and there's no way it can be handled right now in Yuma. We don't really have all the specialists."

So go I did, and had a lovely 8 day hospital stay, six days of which was for testing and testing and MRIs and CTs.. and had neck surgery on day 6 of all that. That went well, then I was told to come back 3-4 weeks later to see both my neurosurgeon AND a neuroimunologist. Sheesh.

Long story short-- cadaver bone and plate in neck is good, but I don't have RA, I have relapsing remitting Multiple Sclerosis. This might be why I was so low on energy, had hard time focusing, and could have cared less about the news the last part of last year. I dont' even wanna THINK about politics riht now, because frankly, a lot of it seems short term crap to me as we speak of it in this country now, and not discussions of real systemic change.

So perhaps my foci will change now (change I need!), but undoubtedly I will be snarky and cranky and not a true believer (tm) in the Great Tan Hope. I wish him well, I wish he would have said "Biracial" a few times, and hope the fact he would never be able to fulfill the needs of all the people voting for him does not come as a surprise to anyone.

Oh yeah, and the Ms seems to have affected my typing, spelling, and speaking a bit. fun to aphasia when you teach english!

Anyway... paz y feliz ano nuevo to mi amiga/os out there. There's always Spain....