Clearly the gods and goddesses of the MS wilds have shat on me again. I spent a month and a half with what I finally realized was the first instance of the "MS hug".  Oddly, it was mostly on the right side, and I and others thought i might have torn my rotator cuff. Nothing really helped, but it finally settled down. Now I'm a little aphasic now and then and have trouble spelling at times. ALWAYS fun.

World MS day is closing in and I guess I don't have anything going on, since we raised money via Zumba for MS. The proceeds, almost 500, went to the Barrow neurological foundation at St Joseph's in PHX. I do admit, though, that I'm ready to leave the hospital when I move to Texas-- both my original MS doc and the replacement neuro have left the hospital.  Indeed, my original doc leaving is really what unlocked the doors to me getting the hell out.  Right now I'm trying to manage with my neuro in town, who is actually going to go back to school in July, and so he'll be leaving.  I think I will ask him if he would prescribe modafinil, as frankly, I'm hating the brain fog and general debility.  It's been an exhausting year so far, and the job has certainly not helped!

In any event, I'm going to have to manage my stress better-- this job ends 6/30 and technically I'll be job and check-less until about Aug 15th. Lovely.  We do plan to move either July or December away from this forsaken place, job or not.  Let's see how that works out-- i mean, there are always clinical trials, right?

Have a heart, save a brain

It's MS Awareness Month. Have a heart, save a brain...

I'm organizing a March 16th St Patrick's Zumba Party to benefit St Joseph's MS Research in Phoenix.  They helped me get my brain and life back... it's the least I can do!

Hope everyone out there is having sunny days, or at least staying warm.
(Brain and heart products of my independent study ceramics class...)

Going to pot? (sorry...)

So it's clearly been too long, during which time I've gotten a temporary title and money raise, and for the most part my MS has been manageable except for recent muscle weakness issues.

However, among other interesting developments, AZ, my state of residence, has legalized the use of medical marijuana, and spasms such as in MS are one of the specific reasons to request use.  Will I request? I'm not sure, but I will say that I am annoyed by the difficulty of dealing with pain and spasms without falling asleep after taking clonazepam.

I'm not anti drug at all. I'm not even pro-pot per se.  But I have been very fortunate post-clinical trial to be generally okay.  Zumba still helps keep me moving, but Ican feel that weakness creeping up on my legs.  I'm a lot slower-moving now than a week ago, just to not keel over when my knee goes.  I carry a cane just in case.  I'm pretty damn lucky, as well as incredibly stubborn and determined.

At least MM would not be invasive surgery, or an implanted pump, or other medical temporary solutions to spasms and pain.  I'm just not really sure how I would feel using MM and being paranoid, even if protected by law, of being 'caught' with it.

Oh well. We shall see what my pain management neuro has to say about the issue. I bet he'll poke me with an acupuncture needle...:)

Warning: grammar/spelling rant ahead.

 There's something pretty insidious about spelling and grammar. Insidious because in English, it can creep up on you in often-illogical ways, smacking you upside the head with an errant I or GH... And to me specifically, it is insidious in how well spelling in particular is embedded in my brain to the extent that I have uncontrollable reactions to bad spelling (and sometimes to bad grammar, but I can be more forgiving of that.

I'm a English prof, with a PhD in Literature, so one can imagine I write, speak, and spell well. I do. I don't do it all the time, and certainly don't expect everyone to do so. However, the rise of the internet has exposed me to far too many truly horrific examples of writing which demonstrates a not even creative way with spelling, but a careless way. It's not that people CAN'T spell; rather, it is that they don't think it matters, that their rants, raves, comments, blogs, etc, will be crystal clear to everyone, even if the audience doesn't live in the blogger's head.

This drives me batshit sometimes. My theory is that if you put your crap out there in public in a serious manner, as something important and worth saying, then treat it as worth expressing well. I understand when people are having fun, like with kittehs and goggies, but that's specific, intentional, and even has a grammar (for real). I understand dialect, jargon, and even argot-- but I don't understand lazy expression, especially when the subject seems of such great import to the writer.

Yes, in a way I'm ranting. But when I write a sentence on the board with no punctuation, no transitions, poor spelling, etc-- my students look at it and will say, "What's it say? It doesn't make sense!" We then try to figure out what the person meant to say, rewrite, and even if they persist in poor writing online, they understand that HOW you say what you say is very influential on its meaning. They know when they can hear and understand or read and comprehend then certain basic patterns have been followed and that is what makes communication WORK.

I'm not picking on any one person here. And yes, my own MS may impact my ability to spell (I don't use spellcheck, preferring to edit as I go). But seriously-- if you think your experiences and worldview is worth sharing on a widely public sphere online-- give more than a passing thought to its expression. It will help make your voice more powerful and, in some respect, more meaningful.

 Here endeth the lesson/rant.

Unbearable pain-in-the-assness of being

I'm so fantastically poor at blogging consistently, even though sometimes it is helpful. The heat rising here in cr*AZ*y, though, is already taking its toll. I find myself thinking that you know, maybe I DO want to be on a drug, even as I realize my clinical trial drug is actually still doing its thing. It's the little stuff, you see. And for some reason, perhaps due to the heat, MS, and my crappy state, I'm much more in a funk than usual. I feel unusually alone, but also maybe a little hypersensitive to things. I don't have PBA, but still, sometimes I just feel like crying. Sometimes, I'm so tired I feel like crying. On the other hand, it's not like I have many very close friends around here, and indeed, sometimes I wonder about the friends I have- y'all ever do that? Like I worry or believe that I'm either not worthy of the friendship or that I'm more annoying than a friend. This of course would be a good time to find a good therapist, but I have tried and I just think there's not a lot of talent around here. OF COURSE, there's always that cloud of hey, are you ever gonna think about your mom's death, or your mom period, are you ever gonna really clean up your home and stop living like you'll die any second, and afre you going to stay with the person you are with now forever? Weighty issues, and I'm beginning to feel too many of them all at once now. See, this is when blogs become dull! I should probably carry on and write some story to get junk out of my head and onto the page. A little fiction now n then rarely hurt anyone:)

bwaahaha

WEGO Health post #1

My MS poster!

"Dear 16-year-old-me. Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?"

At 16, I was graduating HS, looking forward with a naive sense of possibility that only a teen can. Looking back, I think I would have told myself to be, oh, a little less in a rush:

Dear Sam: You feel on top of the world, and you have good cause to be proud. You're smart, fast, and enthusiastic, but not very socially bright. I have to say, perhaps you should learn to listen better. You'll need it in the future.

In addition, don't lean on your ability to get things quickly in school. I can tell you that you will hate math in the future if you don't dedicate some time to it and other subjects you're not very interested in. Don't wait until grad school to learn your limitations and push to overcome them.

You won't need to make everyone happy all the time-- so try to get over that. I know it will be hard, but your life will just be better.

Also, please enjoy the health and energy you have. It's too easy at such a young age to take everything for granted, including walking and seeing. Work out, play, and have fun, but do take care of yourself-- because ultimately, no one else will.

And know it'll probably be all right, but you may always have to be a little stronger, a little better, and a little faster than others, because the world won't be equitable in your lifetime. Don't let that get you down. But also know it's ok to get angry about it, and remember-- people will always say YOU'RE the one with the problems about race/gender/culture/politics, not their own unexamined selves.

Find friends. Find mentors. Find happiness in you, and remember to sit and be quiet once in a while, especially near water. You need that.

ZUMBA FOR MS!!!

My first attempt at MS fundraising!

So this week is MS Awareness Week, and a few weeks ago I decided I wanted to try and fundraise for MS-- I do Zumba, which has been really great for balance and exercise, so it seemed logical to have a Zumba Party to benefit MS. My Zumba instructor is absolutely awesome, and I managed to get the close middle school to donate the space.

These benefits do pretty well in this area, but I'm a novice at advertising this kind of party, and I'm hoping we are able to have a lot of fun but raise some money as well. Yes, it falls on March 17th, but we've got some high hopes that since it goes from 4-6, that people will want to work out before seriously partying :)

The above is the poster, and I love it... I love how they have the information there, and I love how dynamic it is. Regardless of how many people come, I am sure I'll raise more money than penny-drives! :)