The autumnal ravings of a near-insomniac

Well, here it is, my favorite time of year, and I just so barkingly want winter to come so I can get a break from my job. For whatever reason-- OH! I know, the fact I didn't really get a vacation/ break this year from work-- I just am over the educational phenomenon in the US. It's been a bit mind-numbing lately, and also affected by my distraction due to Bear getting a BAHA implant underway.

Oh yeah. We are a multi-disability household! In the most recent test, his hearing is down to about 10% in one ear, with comprehension about as bad, and his left ear is at 40% hearing loss. The BAHA (Bone Anchored Hearing Aid) sends the sound vibrating through his skull to his other ear, which has a conventional hearing aid. It's not a cochlear implant, but if things get worse it will become one.
How the BAHA works

It's a really interesting idea, even though slightly less than ultimate technology really. But get this-- his BAHA will have a plug in for a MP3 player! OMG!

The bad part is it's quite gross-looking. The surgery involves ***WARNING GRAPHIC!*** cutting a slit behind the bad ear, lifting the flap to remove all the follicles, scraping all the tissue and muscle out down to the bone, and drilling a titanium screw a bit into the skull so it can osseointegrate, then kinda sliding it all back together and attaching an abutment to the site, then bandaging it all up.

Pic of a well-healed site

So needless, perhaps, to say I'm alternating between basket case and mental defective, and really would like very little more than getting the hell out of my job for a few months. Of course, I'll probably end up teaching something, because we still need the money-- one of the big reasons to deplete the savings for the BAHA is that Bear really is unemployable without proper hearing, but likely not disabled enough for any type of disability and he's not of retirement age. Sigh.

So yeah. Good news is that the last MRI didn't show new lesions, just old scars. I have since decided "Scars on my Brain" will be my autobiography title. Bad news is that I still haven't found a way back to any form of my center or any state of relaxation and calmness. It's insane here, and I struggle to not dislike it so much more each day. It would be best if I cared less, but that's hard to do for me. ARG!

Why can't I lose weight rather than sleep, dammit?

Straw, meet camel!

So the last few weeks have been quite MS-centric, with a dull headache for four weeks now, one PCP who still thinks it's a "localized headache", my neuros who are trying to get MRIs and MRAs done (that last for an aneuyrsm), blurry left eye vision with no apparent physical cause, and some shakes.

You know, typical crap.

Then, to top off weeks of hell at work, I get a call from my oldest brother that, following a serious manic episode at the end of a long week of mania, my sister ended up in the emergency room and from there went to a "center". She's bipolar.

Someone said "damn, she can't let you get the last word on anything!" I laughed, because I still think my melting brain beats her chemically unbalanced one any day. But honestly, I'm still not sure what to do with this. It has hit me harder than my own MS diagnosis. She was there with me, and we both did the thing my family does-- "uh... so okay, what do we do now?"

For me, research helps me think through what is happening. Everything I read helps to explain a lot about my sister, if hindsight is 20/20. Sure, she'll be on meds for the rest of her life, likely, but I'm not worried about that. I guess, I'm worried about how it will feel to know my sister isn't really totally capable of being leaned on. I haven't leaned on her for much lately, but in the past, especially after our mom died, we spoke a lot. I think this last time I spoke to her I let my own impatience get in the way and disagreed too much while she was still a bit manic.

Oh dear. Why is there so little effort, compared to things like cancer, say, to help resolve the foundational problems of the brain? I mean, I know we only have our brain to know our brain with, but the brain just hasn't been made sexy enough. We have no ribbon or bracelet, and yet... and yet.

Yeah, I buy pink. I wear my orange MS band. I'll wear a bipolar band if one exists, but the thing about issues of the brain is that somehow we seem so afraid to share and talk. Everyone seems to have an opinion, but we don't talk about what it would mean to really explore the brain, map out some diseases through PET scans, etc.

So, let's really think about a brain symbol campaign! How about shirts with diseased brains on them? A few with MS lesions? I'll offer my MRI scans!

The carnival of mania, mistrust, misrule, and MS begins anew!

Lovely idea!
Yes, that's right! Classes have started again and after a full year of sloggin' through research on retention, success, assessment, administrivia, and oh yeah some other teaching, I'm ready to put on the armor and go forth into academics. Or so I think.

Biggest freshperson class we've ever had, lots of lost students, lots of papers and online organizing-- always the same, really. I do like back-to-school time a lot-- something fresh and new and hopeful about seeing students excited about school. I will admit that college students aren't always that excited and some can be quite truculently silent (as some profs can be, myself included at times). I will admit that the closer they are to high school, the more aggressive they are in their desire to stand out by fitting into one crowd or another. I will also admit I wish I could have more Socratic dialogue and less paperwork.

On the other hand, it's a good job, and I do enjoy the teaching process. I love talking things out with students and figuring out how to help them best. Seeing lightbulbs go on in people's heads is a great reward!

Of course, with this comes the worry that my brain might short circuit again-- or was that a moment of blindness in my right eye? Will 126 degree heat index make it impossible to move? Will I start fluffing words again? WOE!

Yeah, I do worry about that a lot. My work is pretty much all mental, though some is simple endurance, and my brain needs to be pretty well oiled for me to do my job to my satisfaction. I'm hard on myself, but I'm hard on my kiddos too. Luckily so far my job's been okay with accommodations (like dr. appts during the work week!), but I personally feel a little less-than-spiffy. I'm sure it will all ratchet down, but good heavens.. what a job for a MSer to have!

The long sunny, it's too damn hot post

I really do hate the heat in Arizona, but having gone to Philadelphia a few weeks ago, I can officially say I think I hate humidity more.


Fortunately Yuma tends to have a whole lot of air-conditioned places, one of which ain't my home. Well, it doesn't seem that way. There's not a lot one can do without an industrial A/C when it's 118 outside-- again. I'm ensconced in my office and still have a fan blowing on me. Libraries and malls tend to get full quickly, as does the Wally-world. A couple of days ago I went to see Despicable Me in 3-D (didn't really need to see it in such, tho, great script), and for some reason right at the beginning it was warm in the theater. Isn't the reason people go to a movie to stay cool? Or did movies get good all of a sudden?

I digress. Despicable Me was very funny and smart, though the attitudinal kids annoyed me some. Most do. The minions, however, were a total blast!Click for Minions!!

That was probably the most social thing I've done lately-- went with Bear and friend n kid. Popcorn was nice, tho got a bit carried away with the white cheddar powder add-on. I don't really get out to flicks much, but netflix is my friend. I've been on all kinds of kicks, from Brit-com to classic. I do love some classic B/W films! So netflix allows me to be realllllly self-indulgent!

OK, still too damn hot but time to pretend other work is important rather than surfing the web. Ta!

Ocrelizumab-- the final infusion

*insert dramatic music*

earlier today I had my final infusion of my clinical trial.. Was exciting-- well, also because I was watching the World Cup during it, but I've had such a good response to it I'm psyched about the whole idea. So now, for a while I'll be observed and go in for an occasional MRI, until my B cell count goes back to where it was (or up...).

I admit that it could be a little daunting, since I guess as it rises I could have pseudo or actual relapses, but I'm glad I did the trial, for myself and others it might help! I am still in love with my Italian Phd/MD/ Bronze Olympic Medal Winning Neuro and his staff (GO MIA!!!) and the hospital.

The heat in Arizona is still bugging me, but thankfully my teaching is done for the summer and now it's all mostly administrative work. I get to go to PA for a conference July 11-14, so that might be amusing. Work-filled, but amusing! I could totally use a break from the heat-- it was 85 at 630 this AM, and is probably 103-105 right now, 3pm. AIGH!!!!

Hope everyone is coping well, heat or not. Let the dog days begin!!
Sleepy Auggie Doggie

Stupid things people say about MS

*reposted from "My daily Apple", Trevis Gleason's Life with MS blog*

(I'm not sure what the stupidest thing is I've heard, but I think most of the stupid things have to do with people thinking I'm going to die from MS tomorrow, and others offering some dope-ass cure ideas [parsley? really??]. Read on and snicker in empathy. Oh, and happy World Cup!)

June 10, 2010
People Say the STUPIDIST [sic] Things (About MS)

While , “But you look so good…” may be intended as a compliment (or at least a deflector) coming from someone talking about your multiple sclerosis, there are other things that people say that is downright mean. Whether or not it is intended, people can say some pretty hurtful things about (or actually TO) those of us living with MS.

While I must admit that the most offensive thing anyone has ever said to me was along the line of, “You don’t really need that cane; do you?”; in a recent article in the National MS Society’s Momentum magazine I read evidence of some pretty awful stuff that people can say.

Sure, we could chalk some of it up to ignorance, some comments up to fear and some a deflection device for their own “stuff”. Some of it, however, is nothing but people being just plain mean – The remark made to one of my commenters, Jan, about using a handicapped parking space was a perfect example of someone being nothing more than a complete ass!

Most of you know that we try to focus on the more productive in these pages. Once in a while, however, it’s ok to talk about the darker side.

As I unpack from one trip, only to launder my clothes for a jaunt back east tomorrow, I just can’t get this article out of my craw. From insensitive employers and coworkers to verbally abusive spouses, there is NO reason that we should put up with such comments.

The only way I can deal with these thoughts right now, I guess, is with an indigent, snorting laugh. “Some people’s kids…” So, rather than simply for the pity of it, I’d like to ask you for the pure pleasure of the humor only those who have been there can appreciate; What is the meanest thing / worst thing / stupidest thing that anyone has ever said about your MS?

Let’s all laugh at those people for their assumptions of us.

Time to party with the tofu!!!

Protein helpful in restoring myelin?

I'm psyched about this article, which discusses the result of research into protein: "A protein that helps build the brain in infants and children may aid efforts to restore damage from multiple sclerosis (MS) and other neurodegenerative diseases, researchers at Washington University School of Medicine in St. Louis have found."

OK, so it was in EAE, but hey! We tofu-eating vegetarians perhaps really do have a leg up on MS in general. No Omega-3 oils for me except from flaxseed, but I am a total protein junkie, big time. I do know that fatty acids are prevalent in myelin, and one of my neuros keeps pushing the fishy stuff on me, but I'm not biting (heh) just yet. There is a veggie omega-3 out, made from the algae fish eat to make their omega-3, but I just haven't ordered off the net yet. I should prolly do that sometime soon.

In other news, it's hotter n hell out here in crAZy-- hit about 108 a couple of days ago, though today it's "only" 100. Yes, it is a dry heat, but it will still kill you dead. I will be using my cooling vest (Thank you MSAA and SteeleVest!!) a lot, methinks.

And of course, WORLD CUP starts TOMORROW!!! Of course, starts like 5, 6am my time... AIGH!