Saturday, September 29, 2007

MS Doesn't Stand for 'Microsoft'


Or: How I Learned to Stop Worrying and Accept the Diagnosis.

I've been spending almost all of my 'online time' researching MS, the treatment options (I think I'll be selecting one with my Neuro on Tuesday), lurking in MS forums and finally joining and participating in one, which instantly became a great source of information and perspective.

I haven't posted, because I've been wrestling with the impulse to post MS stuff – I realize that it can only hold a certain degree of interest for you all and I want to give you the 'other stuff' too. Anyway, I'm not going to fight it anymore and if this becomes an MS blog for now... so be it.

I've found a couple of interesting 'alternative' resources that have been a welcome complement to the more 'above ground' stuff.

Looking Forward with Multiple Sclerosis is the diary-like blog of a 40-year-old woman living, working and raising a family while coping with MS. In a very personal and candid chronicle the author documents (often in frank detail) the realities of her life with MS.

Another is Multiple Sclerosis Sucks: How to Suffer From a Chronic and Incurable Disease Without Appearing to be a Total Loser. It's one man's biting, sarcastic, no-holds-barred and often darkly hilarious humorous ["Hilarious" is probably a bit strong. – Ed.] breakdown of his 'journey' with MS. Be warned, it's not for the faint-of-heart or those that can't enjoy a bit of gallows humor.

Notes:
1. My diagnosis, or Dx as we type it now, is actually Clinically Isolated Syndrome, or CIS, a common precursor to an official MS Dx which comes with a second exacerbation.
2. No two cases of MS are alike.

Tuesday, September 18, 2007

Your Brain On Drugs


So, I've managed to avoid this fate... only to be confronted with this possibility.

I'll explain. Montel Williams was diagnosed with MS in 1999. That same year, he established a foundation to support those that suffer from MS and the effort to find a cure. His symptoms have included some significant pain. He has used – and been a vocal proponent of – medicinal marijuana to alleviate some of those symptoms.

So, depending on how this thing plays out, circumstance may dictate that I kick it all 'Montel Chilliams'.

I'm jus' sayin'.

N.b.:
1. I've now seen my brain – off drugs at the time – and it really looks more like scrambled eggs.
2. As a recovering alcoholic (10+ years! w00T!) I feel for the Hoff. I really do. But, then I realized he's a do*chebag when he's sober too.
3. Thanx to Diego for the Montel MS Foundation link.

Sunday, September 16, 2007

Harder, Better, Faster, Stronger


It may be because I'm a fan of both the original Daft Punk track and KanYe's recent skillful appropriation of same [See: BTW: Daft Punk (& Kanye West)], that I dig Daft Hands so much. But I also believe it stands on it's own as a positively brilliant, unexpected and elegantly simple interpretation of the song.

Saturday, September 15, 2007

We Now Resume Our (Ir)Regular Programming


Thanx for your patience.

So, it's been three weeks since I woke up with the mysterious blind spots [See: Please Stand By Ed.]. After a fast-tracked journey (aided significantly by a succession of great doctors) and a series of tests that covered the gamut (A range held down at one end by, I sh*t you not, "how many fingers am I holding up") to discover the 'what' and the 'why', we're on the cusp of a confirmed diagnosis. I say confimred, because Friday's test, a lumbar puncture – commonly, 'spinal tap' – should erase any doubt about the informal diagnosis that has been suggested almost since I took the first test. Multiple Sclerosis.

So, one mystery seems to have been solved but the answer, MS, is itself a bit of a mystery. Even with a diagnosis it's almost impossible to get an accurate prognosis – it's sort of a 'wait and see' disease that follows a few different paths.

Now, in case anyone wants to get all dramatic and overwrought about the news, please know that myself (and Hol) made our peace with the diagnosis almost as soon as it was suggested and are doing just fine at this point. We're ready to take it as it comes. The prognosis does get a boost by the early (within 3 months) catch – so we've got that going for us.

I've learned a lot about the disease in the past three weeks and have a lot more to learn. I will probably share some of it in the coming weeks. So, I apologize in advance, but there's a distinct posibility that WTF will skew 'MSy' for a bit. But, I'm hopeful that it won't define WTF and I'm hopeful it won't define me.

A few things worth noting:
1. We won't have a confirmed diagnosis until next week, but we're 90 - 95% certain.
2. Aside from the likely MS diagnosis, I'm strong like bull. Blood pressure, heartrate, vision, blood work etc., etc. are all
excellent.
3. If you're like me, the terms 'lumbar puncture' and 'spinal tap' conjur sensations and expectations of something akin to medieval torture. However, I'm pleased and relieved to report that an 'LP' is not significantly worse than having blood drawn. Go get one today!
4. I certainly have no expectations that any of you learn more or 'do someting'. But, if you're compelled to there's a new button over on the left, for JoinTheMovement.org, that would be a good place to start.