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.

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!

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.

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.

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?

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'.

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!

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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 oneiowa.org 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.
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