World MS day

Crap...the stairway to heaven/a cure is steep indeed!

Imagine a day when everyone in the world got to experience a nice MS relapse!

Now THAT would be a true eye opener for many. I think even our caregivers would be surprised by the rebellion of our bodies and brains. Because really, you know, it is hard to describe the myriad symptoms, the pains, nerve issues, etc.

I do think our docs and researchers are trying very hard. I think for some, a sincere treatment without many side effects may be near. For me, the monoclonal antibodies work well, and I am VERY glad for them: my brain was so swiss-cheesy it still isn't funny. While I do fret a little about the future, nothing in me says I'm gonna give up, so I can fret, but right now things are manageable. It's like when I lost sensation in my right arm after being clobbered in a rugby game (the same injury which probably led to my back problems and herniated disk more recently)-- it sucked, but a couple of months of therapy made most of it better.

Perhaps as this MS day comes and goes, we can really think deep about our own reserves and powers... I'm not saying we can heal our mind by happy thoughts, but we can free ourselves from some worry and enjoy, endure, or observe the present with equanimity. That would be an admirable goal!

elements of argument

Ironically, as a prof who has to teach argumentation now n then, it is interesting to see fallacies and logical problems so rife among people who otherwise seems well-educated and/or rational.

I happen to be a member of a few not-always-well-respected groups (including educators) and am always astonished how insecurities and fear drive knee-jerk responses to them. Im sure a few MSers who happen by this blog might think "uhuh, dyke spic bitch fuck", but think about it: from whence comes the reaction? 'cause I'm not agreeable or accessible to someone?

I live in America. In AZ, where it's legal to carry a concealed weapon without a license. Into bars, even, unless posted. I'm not hugely fond of AZ, but should I choose to carry a gun (and I've even had law enforcement training for the feds), I imagine some people who have knee jerk verbal responses to my existence might be quieter.

But I don't want to carry a concealed weapon. I'd like to hope one day our American brains become as fast as our mouths. We're still reading as a nation at about 8th grade level. Many of us argue like a pingpong game-- back n forth, did not-did too style.

Argument fallacy 101-- Begging the question: treating an opinion that is open to question as if it were already proved or disproved. (thank you, LB Handbook, 11th edition)

Non sequitur: 'it does not follow'-- drawing conclusions from irrelevant evidence (ibid).

Anyway, desire springs eternal for my countrypeople. As does desire for a MS cure. But until then, civil discourse on all sides would be of value.

Health and love to all!

My little boy

Tommy Lee, 1997-2009. Love you, baby!

Today would have been my catson Tommy Lee's 13th birthday. He died last year, Feb 7th, not even four weeks after I was diagnosed with MS.

Let's just say 2009 was a catastrophic year for me. I hadn't needed any more "character developing" moments in my life, and i always say, that which did not kill me just didn't try hard enough. I have a whole philosophy about hope, too, but that would take a lot of time.

His unconditional love, his sense of peace and grace were so tremendous... I would love to be him. We still have four cats, including his little brother Casy, who will be 8 on May 20th. But TL will always and forever be a huge piece of my heart and life. May he always be in peace, and hopefully, neve be reborn into this life-- I can wait to hold you again, my little boy. I love you.

Goin' the other way on the CCSVI limb

I was recently asking some people who know I have MS why certain people reacted as if I had a potentially explosive brain tumor when they heard I have MS. Without hesitation, the response was "they just don't know better."

OK, I can dig that, I guess... because it corresponds with my own lack of overwhelming concern about dying from MS, or disability. I've never really felt like MS would kill me, and I've long been ready to be a fulltime crip. I won't be overly stressed when it happens.

I've had signs and symptoms for at least 3-4 years now, with diagnosis Jan of 2009, but I kind of figured well, can anything be done? It can? Well, let's do it. That is not to say I haven't had bad times and that I won't have more... doesn't mean I enjoyed avonex shots and side effects (which went away), but I just don't have the feeling of MS as a "horrible, disabling, crippling, monstrous" yadayadayada life-sapping badguy. I know I must seem very lucky to some who have MS-- I have insurance, a fanTAStic neuroimmunologist, a working clinical trial, a job, and a genetic predisposition to get things done. I have done about 90% of things I've wanted to (honestly-- i'm just missing the Oscar), and all that is left is to live a good, decent life and create as little terror and pain as possible.

So yeah-- I just am not hopping on the CCSVI bandwagon. There are serious problems in the methodology of research (yeah, I'm a PhD in English, but I read pretty well too). My major surprise is that I didn't really think I'd see a shrill (both ways) medical fad/ cure/ treatment/ whatever it is or might be acted out as they were in the past. Hey, I'm a vegetarian, I like my herbs and adore my teas, but it's not those that turned the Xmas lites off in my brain. Whatever the reason, the clinical trial drug works VERY well in me-- may not in others.

I look at it this way-- I was so ridiculously low risk for MS (not Scandinavian, raised in the sun, not even ONE yeast infection, and a non-environmentally risky job-- but yeah, female), yet my lesion load was so tremendous that it took 8 docs 7 days or so to hesitantly determine what I did NOT have-- by god, SOMEONE would have noticed blood drainage/circulation issues!

Or not...

And that is how the discussion of CCSVI goes. There is always someone who was cured or will believe themselves to be cured via unorthodox ways-- I swear one person said he was cured by parsley, chorella, and vitamin D. HMM!! Shouldn't the vegetarian have been protected from MS if veggies were the key? Undoubtedly, I'd contracted some invisible yeast infection.... or it's stress... or blocked veins.

I really do hate monolithic arguments. I can understand fear and loathing of MS. I am sure I'm relatively "lucky". I'm even a bit credulous.

But not about MS. And if one more person declares "all docs"/neuros are "in bed with Big Pharma" I'm gonna smack them freakin' silly. With my still-functional right hand, then beat them with my occasionally-needed cane.

Grump. I await some science.

And anyone mention grammar errors are "not supposed to be in English-major blogs!", I will say I'm off duty-- and THEN beat 'em with my cane. Grr.

Feliz Cinco de Mayo!

..,.and now back to the regular schedule of politicians backtracking from race and color....

That kinda stuff just gets my MS going, you know? Sheesh. Nothing like being youngish, gifted, and brown in AZ to make one feel nervous!!

Oh well... AJUA!!