Sunday, November 7, 2010

For those just joining us . . .

It all started a year ago almost exactly to this very date. CTV of Canada broke a story of a vascular doc from Italy whose wife had been stricken with that 'ol crippling disease we all know and love - multiple sclerosis. "Heart-warming fluff piece," I can see the old gruff news director tagging it.

Heart warming, yes. But fluff? Try MEDCAL BREAK THROUGH!!! It wasn't long before this man had emerged himself in the MyStery that once was MS. Love for his ailing wife driving him, he discovered this supposed auto-immune disease may just be vascular in origin.

And get this: Is it a coincidence that the majority of MSers PROPERLY tested for CCSVI test positive? I think not! To be perfectly honest I believe those who haven't been found to have CCSVI have had one of two travesties occur. Option 1: They were misdiagnosed in the first place and don't really have MS at all. Thus they don't have CCSVI. Whatcha think 'bout them apples?

Ever heard of WebMD? Several of my docs sadly have not. It's a wealth of information, I tell ya! Oodles and gobs of neurological disorders out there worthy of making it on an episode of HOUSE, M.D. many, many of which could be masquerading as plain 'ol MS. I kid you not! THINK ABOUT IT!

And my personal favorite, as I feel this one has happened to me is, Option 2: Not being tested properly. Remember this IS new territory people. For example, newbie docs set in their ways either not really wanting to find anything or worse yet wanting nothing more than to disprove this Italian vascular cuckoo. How dare he of little significance even propose their big bad MySterious MonSter of a disease could have such a simple origin. And worse yet . . . REMEDY!?

Let me clarify for those of us suffering brainfog. Yay! Another of my fave MS symptoms. Or could it be a CCSVI symptom? Anyways, why would docs wanna change the way of thinking about a disease that they learned all about on day one of their illustrious medical schoolings. Why would they wanna have to go back to school? So what if it helps their suffering patients? SO WHAT?

Or maybe they fear losing all the money they get in kickbacks from all the oober expensive MS drugs. Big Pharma? Huh?! That'll hafta be a tangent for another time. But seriously, they themselves admit they don't know how their very own drugs work against the disease because ADMITTEDLY NEUROS THEMSELVES AREN'T EVEN FOR SURE HOW MS WORKS. Duh?!?

But really. Think about it. Neuros have alot to lose with this silly little singular vascular docs discoveries. $$$$ I'll say it again. $o what if it helps their suffering patients? But I shant waste my time worrying about the greedy heartless docs of the world losing any sleep. Alas I have waaay to many MS/CCSVI symptoms of my own keeping me awake at night.

Bladder emptying issues. Muscle spasms in my legs. Throbbing swooshing behind my right ear. And last but in no way shape or form least - the beloved MS hug. If only I could see that hugging bastard, I would start by clawing his eyes out. It's as if I'm in a big medieval device hell bent on crushing my ever protesting rib cage.

But enuff about me already, this set out to be a recap piece. An anniversary celebration! Can I get a 'Yee haw!'? A year, you say? Hard to believe it's been a year since CCSVI came to light. And as widespread as it has become it has still failed to truly COME TO LIGHT! But I'm not here to rag on all my local TV stations for ignoring my countless pleas for a story. Nope. No need for that.

Much has happened in a year's time. Much. Focus on the positives. That's what I'm hear for. A nearly year long JOURNEY I've been on now. In case you hadn't noticed --- I'm growing weary y'all. Where's Bobby Knight or Lou Holtz with my pep talk already? Let's see if I can't accomplish one all on my own, shall we? Here it goes:

Seems like only yesterday I remember getting online to verify my father-in-law's hearsay that someone somewhere had , dare I say it, found a cure?! WTH? It was that fateful night that I came across the CTV news program. I remember it in eery detail. Frame for frame. Nearly line by line. And as vain as it may make me seem, I remember it more so than even the 9/11 coverage. Forgive me, this Lord, pleeeeaaaase.

But I was intensely affected by this broadcast. I didn't know it in that moment, but it would shape the next year of my life. Probably - hopefully - even longer. So there I was on my couch just as I am now watching the aforementioned life altering perhaps life saving program! Not once, but twice in it's entirety. It had been split into two clips via Youtube. I sat in silent awe of the then brief and choppy before and after accounts. MIRACULOUS!

What a weird name I had thought - Zamboni?! And to hear him talk. He struggled with his English but his PASSION came thru loud and clear! They called it the Liberation procedure. CHILLS! Everywhere! I remember thinking about one patient, "That poor bastard looks like me!" Tears welling in my eyes. Streaming down my face. I didn't dare wipe my eyes for fear I would miss something.

Denise jumping. Kathleen dancing. Marsha in heels. Yvonne's speech. There've been many tear jerking triumphs since but none has gotten to me as much as the first. The breakthru of the breakthru, if you will. I mention names you haven't heard of? I now know these ladies well. These lady pioneers!

In this time I have amassed many, many friends on Facebook from all over the world. Fellow bloggers and vloggers, all with their own wonderful stories. Boggles the mind how much I have in common with so many of these once complete strangers. I am blessed to share in the lives of so many.

Thank you all soooo much for this honor! Alice, Kimberley, Bhakti, Tina, Brenda, Tessa, Judy, Jeanine, Paul, Christopher, Ken, Diana, Dawn, Linda, Lee, Steve, Mike, Irishbear, Tommy, Carol, Devin, Sandra, Susan, Helen, Andrea, Shelly, and Thane to name just a few. As goofy as it may sound we truly have formed a wonderful family. Yay, internet! We wouldn't be nearly as far along in this miracle without you. Should I thank Al Gore too? He invented it, right?!

Alas, as always, I digress. Back to sooooo much has happened, then, right?! Docs have opened up. Docs have been shut down. One of my first new friends has passed on waiting for the procedure. Love you, Bridget! She was only 41. This is inexcusable. Grrrrr . . . And another nearly dead. Feeding tube and all. Barb is now home and resting well with her family thanks to a simple angioplasty.

There have been papers published. Conferences attended. Rallies rallied. And numerous NMSS functions crashed with handy dandy CCSVI information made available to the masses. I even hit a local walk myself, with help, of course. (Thanks, Melissa and daughter for spreading the news! And to Jason for pushing me all over downtown Evansville!)

So a year long JOURNEY! A rollercoaster. Back and forth. Up and down. Around and 'round. Then back again. And faster! You want more details? Then read my blog! Devils in the details! But pish posh with the details I say as an official MSer or over 10 years now.

Who cares which came first? The chicken or the egg? God created it ALL and I love me some eggs for breakfast and fried chicken for, wellll, truth be known - anytime hunger strikes! Whether or not this CCSVI causes MS or MS causes it is niether here nor there. The long and the short of it - the bottom line is . . . remedy the CCSVI and symptoms us MSers have thought of for years as MS symptoms are improving. Some even disappear! Period!

As if walking toe, heel, toe, heel and jumping aren't enuff - there are MSers running marathons! Riding bikes. Rock climbing. (Insert your fantasy here!) Everyday brings more good news. And bad, sure, but for every bad there's consistently ALWAYS waaay more good. And this IS my life I'm talking about so, no, I ain't lyin' people!

Some haven't seen any huge improvements. Some say none at all. That said, let me refer you back to my disproving doctors theory. Also even the most well intentioned of docs may have missed something or not done something as adequately as they should or could have. Just sayin' . . . THIS IS NEW! CUTTING EDGE!

Have I successfully gotten you up to speed? Refresher course complete? I had hoped this stroll down memory lane would fire me up to get goin' on my before video. I have a degree in journalism ya know. Emphasis in broadcasting. No pressure, right? I'd hoped to blow all the other before vids away.

There'd be super cool 80s music, of course. And it'd be all music video like utilizing my highly sought after editing skills. I've thought about mixing the wonder that I once was with what MS has done to me. But why? Why all that work? I dunno. Possibly as a distraction. My mind is racing.

Why am I not pepped? Do you feel pepped? I sure wanted to. And I don't. Maybe I should hunt down the ROCKY soundtrack and give this blog another go tomorrow. 9 more sleeps 'til the ATL. I'm feelin' like I may just need to blog. You up for it?

Or edit, or sleep, or just play Scrabble. Wait. I think my crops in Farmville may be ready. Pray for me, pleeeeeaaaaaase!

1 comment:

  1. Definitely,what a fantastic blog and enlightening posts,I definitely will bookmark your website.Best Regards!
    Ccsvi Germany