Return of the B-Cell Seven

I'm punning badly on a John Sayles film title there.. ignore it.

So in mid-October, on a drive to Phx from the Yuma hinterlands, I found myself getting dizzy, twitchy.... like a mini-relapse was slamming into me with a ton of different manifestations. I knew I was kind of in trouble in a small town about 90 miles from Phx, when my vision felt a little weird... a bit dizzy.. and my right side twitching and leaping forward as I drove. But the meeting I needed to go to was state-paid one, dept of Education, and I was as far from hm as from the hotel, so I kept going.

A spectacular lightning storm hit as I got on I-10, and wow...I got into the HOV lane ASAP so if I hit anything it would be most likely the highway cement divider. And a pretty 2012 Ford I was driving too.

So I decided to go to the St Joe's ER, which was interesting... long story short, I was admitted after about 12 hours, MRId, not medicated (thank you ER neurologist ya bastid ya), then let go the next evening or... maybe the one after that? I got Bkfast and Lunch out of it. And a snack.

So WTF? Now the main issue is severe spasms in my shoulders and nerve pain there too... after a lot of relaxing, my brain calmed enough to go to the mtg (not the hotel, which gave my room out) with clonazepam scrip, methocarbomal scrip, and later a gabapentin scrip. Turns out taking all three... the clonazepam would give me a MASSIVE, painful headache/ nerve twinging so bad I once slammed 2 beers to stop the pain. Well, it worked. No more alcohol, though.

Still on the Gaba and Metho, but it's hard to get the timing down so that the muscles in my shoulders stay relaxed and calm. Some eye twitches remain, but I can still Zumba and sound only moderately like a moron when I speak. The aphasic moments REALLY piss me off.

Well, it's kinda been waiting to happen, the Return of the B-Cells, and I know I already have damage to my brain-- lesions too big and bright and old to not have that, but I am a little nervous and scared, even though sure, I'll start Avonex if I must. Clinical trial for me is just about over-- just monitoring blood until B-cells return to 2009 levels. FUN.

THE RANDOM POST OF INDIE LOVE

There is nothing more sexy than a thinking man. To that effect, here's my random post of Indie Actor Love, one of the sexiest thinking men on the screen, David Strathairn (and he reads some awesome audiobooks too!)







David Strathairn

Thoughtfulness on an empty stomach

I've been in a frightfully thoughtful mood for the last day or so, perhaps in part due to a massive lack of sleep. I'm sitting down as if to do work, alternately looking at grading, reading, watching a DVD or film clip, googling stuff... and in the process I thought I'd see what my one and only book was doing out there.

No, don't get all excited. My dissertation was turned into a book by Routledge in 2006-7 It's "Post-Revolutionary Chicana Women Writers" blah blah blah. No need to read it, it is in parts quite dense. But there are pics!

"Remembering the Brave Women" was originally its title when it was filed for my PhD in 2004. I like that much better, and have "brave women" engraved inside my class ring (pinky ring, very small). Because I do not have or want kids, I believe it represents the most difficult thing I've ever done in my life. I'm not naturally a very disciplined thinker, and I've always been prone to tangents, so doing a book on one subject was a REAL challenge. Of course, I probably overread for it some, but...

I guess it made me thoughtful, in the way that I still marvel I'm alive now. I had no plans or goals for life except to become "Doctor" (I don't count the 'win an Oscar' wish). At 33, I got to cross the stage with 2 other friends to get the PhD from the U of Iowa; my mom got to see it, as did my aunt and uncle and assorted good friends. It was a truly great moment, and I'm glad I got to do it with friends.

I'm a very, very bright person with a very, very fast and agile brain. That fast and agile brain has been slowed by multiple sclerosis, but the only people who can tell that would be me, my grad school roomie and friend Robin, and MAYBE one or two of my old profs at Iowa. I visited a friend of mine at Arizona State where he teaches now (also an ex-Hawkeye) and we not only had very similar mentalities, humor, and sharp wit, but we agreed that Iowa makes people like that in some ways-- to survive and get the PhD, the terminal degree,, in English, you have to be very good, very determined, and very competitive. I have no doubt with a day's notice or less Ed or I could teach any undergrad course in English and several in graduate English. That's professionally how fast we are and how sharp our intellect is, and a lot of it IS due to surviving the PhD

I don't often toot my horn. But I'm very bright. I have an exceptional brain when it comes to connections, and there's a wicked irony in that those connections are threatened by something completely external to getting old or getting smacked in the head with a bat. I would say it's an external and random thing, but who knows about randomness? It certainly is with me all the time, like the poor or hair issues, but it's not welcome.

At all.

I am pleased that I can still be thoughtful, still link up words, phrases, and clauses (pace Conjunction Junction!), still teach and do it in a flexible style, moving and dodging and creating like dancing. I am not pleased about slowing down at all, even if it's barely perceptible. I sound like a moron sometimes, to myself. I am ECSTATIC about being able to enjoy a good film, admire the talent of good art and fine acting, see and appreciate the world at large, and laugh at myself, others, and my life. I like my life. I just didn't expect it to go on so long.

So at 41 (bday in October, thank you thank you), I think back and think forward. But most of all

I

THINK.

End of the 1st week of classes

WEll, we started with a huge bang and assorted thumps. I'm glad to see some of my students back, colleagues, and friends. It has been SUPER busy here, and also super humid and hot. August in the sunniest place on earth. It's like Hell, with palm trees!

The weather and work has not made me very happy, but well, at least I'm employed and hope fully we can keep chugging along. I'm still on the lookout for a job abroad to make a wad of cash, but nothing yet. I could do the Emirates for a while.

The MS is mostly quiet, except for some odd twinges and vision blurs. Heat is so bad for it, but hard to avoid. Next dr appt will be to be registered as an 'official' neuro patient at the neuro clinic, as opposed to a clinical trial participant. WHEE!

Does this mean I can go to IKEA??

Was that the sound of the camel's back breaking?

So every time I think I hit another nadir, another massive low, I get slammed down again. OK, me and the fam.

So yeah, MS. Yeah, it's kinda acting up. Legs are weakish, but I'm managing, right? Finished teaching 6 classes in an 8 week summer session, still have some grading to do, but hey, got thru it, right?

Yeah. Husband needs to go to court for not one, but TWO things now. Now Chase, a credit card he had, sold his debt to a corp that sent lawyers after him and named ME too, though I'm not on the account. He's basically unemployed, has severe hearing loss we're dealing with, and we live in the number one county for unemployment in the nation (we're number 1!). He's got 2 teaching certificates, but no one really looking to hire a middle aged guy with bad ears and consequent rough speech.

So I've been carrying the fam for a long, long time now, and I keep thinking we've hit the bottom, but I guess we haven't To put most of our financial affairs in order, one or both of us would have to liquidate any retirement or savings, and we don't have a lot. To get at mine, I'd have to quit my job-- goodbye medical insurance for both of us!

I guess the best that can be said for this most recent straw on my back is that the miracle meds I have been given for my MS are still holding up pretty well, even in the heat. I am quite tired of it all-- as I type this, I'm waiting for the IRS to answer and tell me where in the hell the big check we sent them for taxes went-- why are they still bothering us?

ARG! Sheesh. Well, anyway, we shall see what can be done. Teaching abroad looks real good right now, since there's money out there somewhere--like in the UAE. Maybe, I dunno but I have applied! Fingers and toes crossed on that!

HATE. HEAT

Here in crAZy, the so-called "monsoons" are arriving, and so it's not 118 anymore, but 105 with ridiculous humidity. My legs are tweaking a bit, as the heat affects my MS pretty badly. Hopefully, being I'm in the b-cell monitoring phase of the clinical trial, I will make it thru the end of summer without a collapse. That's right, not a relapse, but a COLlapse.

My last appt was very good though-- dropped from a 2 to a 0 on the EDSS. I love how that makes my neuro both happy and proud-- of me, him, and the drug. I have to say, so far it's been rocking. I'm looking forward to feeling decent, even if I'm still fatigued.

Hope all are doing well and had a good fourth (Americans). Now back to your regularly scheduled program of gimptasticness!

How was your MS day?

Mine was a work day, and the coolest thing was finding the pic of Niagara Falls glowing orange! That was very cool, and even though we haven't entered Komen-dom when it comes to awareness, we're on a roll.

Still not much MS activity down where I live, nor do I imagine any on the horizon. This is a young town unless it's winter, then it gets old and I have so little in common other than MS with snowbirds. Am I being wrong? Maybe. I always have been a little scared of older/ elder people.

Anyway, I hope things were well for any of you out there. So try to hang in, even in the heat!

End of semester notes

I guess the most prominent thing about this last school semester was the massive lack of preparation, driveh, and all other things leading to school success in our students. Across many depts, there was a general malaise and massive absences. I'm not sure, because spring always seems jacked up to me. However, massive funding cuts and fear of money issues may be affecting people's ability to focus. No idea, but its been bad.

MS-wise, it's been a weird couple of months. I may be feeling some emotional lability-- lots of anger and depressive moods. The Bear got on Paxil, but not me. ON the other hand, other things have been causing stress and grief... but there is some kind of change in how I perceive my MS. I think I am feeling mortal and scared. I've had a good 1.5 years, but my clinical trial ends in a few months or so and I am feeling rather vulnerable. I have heard that's possible, maybe prior to a relapse. I also think it has something to do with hating where I live and work.

There's been some good news on the MS research front, and of course the Ocrelizumab trial is really awesome. I have been tripping over words again, but I still feel ok except for fatigue. That's pretty constant, but I do have 2.5 weeks off before summer jams. 8 weeks of summer classes, 6 classes if they all make. OY.

I need a change...perhaps a journey abroad to teach. Whatever it is, I hope it's kind, because I'm not sure how much I can handle right now!

MS Awareness Week

The NMSS "MS=" Campaign

Well we're just about here again, MS Awareness week, and I have a whopping big sign on my office door, tho not everyone at my job knows I have MS. The ones that matter do, the others might be a little intrigued, but for the most part I no longer care.

I do like the NMSS' "MS=" campaign, but there so much that MS can = for me, and I'm not very pithy lately.

Perhaps MS=frustration at myself and also others for not seeing that I am, actually, not entirely well/healthy/fast. That would definitely go beyond one week or one month. But in any event, it's all an intriguing campaign and I wonder who out there knows what "MS=" for them. I'm sure it's ever changing-- it is for me!

Inspired by a blog

I'm a little tired lately, having gone back to work part time for 8 weeks before smacking head on into fulltime teaching again. I'm sure the 8am class isn't helping, but I am glad to notice I'm mostly on the ball.

I was reading a blog (MSLOL radio)which was speaking of show tunes, and the "Try to Remember" from 'The Fantasticks' was highlighted. I do like the song, but i also now associate it with Jerry Orbach singing it post-9/11 in NYC.

So there's a bittersweetness to it for me, as beautiful as it is (particularly as Jerry sang it -- Jerry, we miss you!), an autumnal feeling of both beauty and a deep longing for the things already past. I guess it just put me in mind of the wistfulness I've been experiencing lately. The general overall slowing of my physical self and to some extent my brain is really a different experience. I have been feeling some leg weakness (as I did in 2008) and def. some brain fog, but I still think for the most part I cover it well enough. I still say that i would retire tomorrow if I could.

As it is, two cats have been ill, Bear's Lipitor copay went up, and I have no idea how we'll cover our medical bills. Naturally, that will lead to worse credit, which will lead to yada yada yada. I'm so over my country some time. I know we can be the very best at so many things, but I tell you, MS will smack any national or local shortcomings right in your face.

So I try to remember that last september.. it's not easy, and it has been scary lately. I still am very glad for my MS doc and clinic, but oh so wanting to leave this place behind me, dust, sand, and all.

Happy MS Awareness Month, dammit... wish it never had to come again!!

FDA rejects Oral Cladribine

From Medscape-- not sure how to take this, given its checkered history, but at least Russians and Aussies can get it:


FDA Rejects Oral Cladribine for Multiple Sclerosis
Allison Gandey

March 2, 2011 — The US Food and Drug Administration (FDA) says it won't approve oral cladribine (Movectro, Merck Serono) for multiple sclerosis (MS) without more safety information. Merck announced today it received a complete response letter from the agency calling for additional analyses or new studies.

The company says it plans to request an end-of-review meeting with the FDA to clarify next steps and to identify whether data from completed and ongoing clinical studies can address the questions.

The FDA decision is the latest in a long line of disappointment for the new drug in the race for first oral agent for MS. Cladribine was initially granted fast-track status by the FDA in 2006, but the agency refused to file the company's new drug application in 2009 amid speculation about tabulation errors and potential safety concerns.

Oral fingolimod (Gilenya, Novartis) beat cladribine to market for relapsing-remitting MS. Other oral MS treatments in development include laquinimod (Teva), teriflunomide (sanofi-aventis), and BG-12 (Biogen).

Cladribine was recently approved in Russia and Australia but received a negative opinion from European regulators in September that was reiterated in January.

Increase in Cancer Cases
The European Medicines Agency said it was concerned about the increase in cancer cases seen in clinical trials with treatment. Regulators also complained the benefits and most appropriate dosage had not been well established.

The company says it will remain committed to completing the ongoing clinical trials of cladribine. These trials, already fully enrolled, will provide additional information on efficacy and safety.

Top-line results from the CLARITY (CLAdRIbine Tablets Treating MS OrallY) extension study and ORACLE MS (Oral Cladribine in Early MS) study are expected by the end of 2011. Top-line results from the ONWARD (Oral Cladribine Added ON To Rebif [interferon beta-1a] New Formulation in Patients With Active Relapsing Disease) study are anticipated in the first half of 2012.

"We look forward to working with the FDA to address the safety issues in its letter," Fereydoun Firouz, president and chief executive officer of EMD Serono, said in a statement.

"We will continue to move toward identifying a path that provides patients and physicians the opportunity to have access to cladribine tablets in the treatment of MS."

Upon entering the AZ Dept of Rehab...

...you find that while they are very willing to help, for literally 2 years they have been so underfunded everyone, but EVERYONE, is now on a waiting list for assistance. Bear's hearing loss is enough to make him a possible "Priority 2" for job assistance, assistive technology, etc, but of course, they're not really calling Priority 1 folk, who may have, say, lost a limb in an industrial accident.

I understand on the one hand, and on the other I'm furious that there is so very little AZ can do or has been able to do to help people who need it, especially if they don't fall, say 200% below the federal poverty limit. Sure, we have insurance, which I pay exorbitant amounts to so Bear can be covered; sure, we have a home which we won't be able to sell in the foreseeable future in order to move to a better/nicer/wiser/more beautiful place. Sure, we have food-- thanks, Mom, for being sure I had a fear of running out of food. I've never come close, except that one time I had only ketchup and a jar of peanut butter a day before payday. But these are the people who are gently having their lives chipped away, hanging on before bankruptcy, unable to borrow from job retirement funds or facing unreal penalties for doing so-- these are the people in whom the "bird of hope" perches and pecks away at their hearts until they expire, wondering "what happened?"

Dream on, dream on.

We're a 2D household! YAY TEAM!

Well it's not new, but with the addition of the BAHA box on the side of Bear's head, we have officially entered "2D" hood-- 2 differently (dis)abled people! Bear has severe hearing loss, more than 90% in one ear and more than 60% in the other. The BAHA (bone anchored hearing aid) uses some pretty cool technology to improve his hearing so he can hear much more clearly.

What was interesting was a meeting today of the Hearing Loss Assoc of America local chapter-- in his fifties, Bear was still the youngest. But I think he was excited to find some other HOH people, others he could relate to. I feel for him on this, since I'll be honest-- there's no MS local meeting anymore. And it has been really stressful lately, and I'm only recently coming to the realization that yeah-- ain't no way my life is really going to be very "normal" or necessarily stable. So it's nice for at least one of us to have some local support group or people.

Since both of our issues are essentially "Invisible", we face some fun stares and questions-- I'm sure some wonder about my crip placard. Bear now has a big "Driver is Hard of Hearing" sign on his visor-- a good bit of advice from his hearing aid dispenser. They're actually pre-printed by the state, so hey-- that's something to say for this gawdforsaken place.

While all of this has and continues to be expensive, at least we've had a chance to try the technology and clinical trials. I am very, very pleased about that, though I wish I lived IN the town for my trial and where Bear had his surgery for his hearing. Still a love/hate relationship with the state, mostly hate. If I could take my MS clinic and doctor with me back home, I SO would.

Just getting all the more encouraged to find a way into ADA advocacy!

Today I complete my 2nd* year..

Today is the *2nd anniversary of my MS diagnosis, and my brother Dave's birthday (hi bro!). It's a lot less fraught I think than last year, when I was really mid-clinical trial. Now, the most intense part of the trial is over, I seem to be doing really well, and I try not to let the paroxysmal stuff get to me.

I'm also off work until March, so I can be alternately lazy and pensive. Really what it means is I watch an awful lot of Food Network and Dirty Jobs. Last year was entirely too hectic with work alone, not to mention house repairs and the MS stuff. i still think about it almost every day, and of course when a nerve goes "PING!" it's quite hard to forget what's up with my head. But I am very fortunate in my doc and my MS clinic, and I'm really very grateful. Not much will of course ever be the same, not since Jan 13 2009, but it can be at least manageable and at best more than acceptable.

One thing I'm glad is mostly back is my ability to spell and type. Occasionally lately I'll have some weird spasm of word forgetfulness and it bothers me a lot. Actually, it both scares and infuriates me. My doc points out that he doesn't think I'm going to see much change if and when I do neuropsychological testing, etc, but admits that *I* can sense my own frustrations and halting language. he was very kind the last visit, December 2010: "These are meant for the average, so I don't think you'll see anything much. But it will make you feel better." I in fact have a pretty wildly expansive vocabulary as well as a decently good intelligence (you know, like, smartish and all educationally and experientially well-trained in the arts of thinkingness), and that's WHY I panic when I can't remember a word or how to spell it.

However, since he's been so on target with so much re: my MS, I will not only give him credit, I'll try to stop worrying so much. some might say, "hey, there's spell check!" to which I reply "hay, theirs spell czech!"

Happy month of Janus to all, and to all a good life!

Happy New Year

Well, 2010 did not go quietly... medical and other bills pile up every time we think we have some extra money! But I am enjoying the time off and really need to get into that feeling of relaxation.

Physically feeling pretty well, mentally a little beat-up lately. I do kind of feel a sense of imminent doom at times-- and apparently MS can give you some feelings of dread. (No kidding!) I think if I can just kind of convince myself that it's not the end of the world that somehow, even with an unemployed husband, etc etc, we can owe taxes. I swear, the world is nickel and diming me to death here. And at a certain point, I just won't be able to work extra here and there for more money. It's been an uphill battle to keep things going, but well... what to do?

Well, happy 2011 and may all your days be bright, joyful, painfree, and happy! Or close enough.