Now experiencing what is *almost* a pleasant exacerbation

by Michael S. Kaplan, published on 2007/12/23 10:01 -05:00, original URI: http://blogs.msdn.com/b/michkap/archive/2007/12/23/6841289.aspx


It was something I hinted at the other day in Shticks and stones, for the record I'll now say that I am indeed having illness-inspired acute multiple sclerosis exacerbation.

Some visual symptoms (OD aka left eye only), some weakness in my left leg with numbness and tingling, and something like an almost RSD (Reflex Sympathetic Dystrophy like ashen look in my arms that is coming and going.

It came on fast and will likely go away fast.

As to why it is almost pleasant, you read Quando Dio vuole castigarci ci manda quello che desideriamo which will explain why a less acute exacerbation would have been kind of welcome now, since I can't tell whether how I am doing at the moment with no exacerbations is due to just doing well overall or having officially slipped into primary progressive MS. Of course just a few years shy of 40 it probably doesn't matter in terms of future trends, it is purely wanting the most optimistic label one can attach to oneself.

But an exacerbation fits quite well into the whole Michael the misanthrope thing that this self- and corporate vacation policy-induced  exile to my apartment has kind of inspired. There are few times I have felt less like being in public than during an exacerbation, mild or not. I've stirred out of my apartment maybe four times (three meals and a meeting with a mentee-to-be), with one of those exercises in social intercourse being the likely vector for whatever bug has my immune system's knickers in a twist.

I looked at email for some of the time (trying to help someone fix a keyboard problem and that conversation about Korean with Shawn) -- just one account, ignoring the others -- but have largely been off mail too. And I turned the ringer off on my phone -- eventually I'll need to turn that back on see what I've missed, as well as catching up on mail.

I did win three eBay auctions out of three I tried to win, though now that I have what I want I guess I can pull away from eBay as well for now....

One interesting factoid in all of this, despite my "fragile" nature and susceptibility to illness (at least in terms of it now so easily causing these artificla exacerbations) is that almost 100% of the time the actual disease thast causes the problem (whatever it is) ends up being subclinical. I never show a trace of the original disease -- but my immune systsem "bouncers" who take out the trash fail to follow the Road House rules in that they don't "take it outside", instead preferring to hang out in me and attack some of the locals.

Which begs the question -- where the hell are Patrick Swayze and Sam Elliott when you need 'em? :-)

I find myself embracing the isolation inspired in me by the acute MS symptoms, and I wonder about the truth behind the rumors of Howard Hughes and his isolation and what was behind it -- was it an illness of some sort that he had (I think some have speculated syphilis to explain some of his odder actions)?

Not that I have taken things to Hughesian extremes, though I admit I haven't shaved in a while. Somewhere around this apartment I have a bunch of pictures with me in a tuxedo and a nicely trimmed beard, though I look not nearly so distinguished as I did then (on the other hand I have no event to be at such as that one right now, and no well-dressed date, either!).

I suppose I should be thankful that I am not as rich as a Howard Hughes type -- it would be too easy to seal myself away from the world realizing that getting close to people in even the most trivial and banal ways can lead to week or weeks long bout of symptoms. And for the most part I do enjoy being around people, especially people whose company I enjoy.

Though at times like this I understand the benefit behind Paul Simon's words in I Have a Rock, or more accurately behind the lie of the words. There are times when really doesn't want to deal with anyone at all, and an exacerbation is probably one of the most common for me, even an induced one such as this....

A friend has been in the habit of asking me what's the point of that post? trying to figure out why I bother to do certain posts. To be honest, I don't know usually, and this time is no exception. Sorry!

 

All of the characters in Unicode have taken off for Grand Cayman for the Christmas holiday weekend
(they are staying at the Marriott Grand Cayman Beach Hotel in case you are there and are curious at all the characters hanging out by the pool!)


John Cowan on 23 Dec 2007 11:39 AM:

A woman told me once that what you describe is her personal experience of menstruation -- not that she suffers greatly during it, but that she deeply desires to find a hole, crawl inside, and pull it in after her.

But no, she plays by the rules of modern society and soldiers on.

Ben Bryant on 23 Dec 2007 12:54 PM:

you are admirably wide open. I'm sure many people appreciate hearing your story. Odd how blogging changes the nature of isolation -- you're physically isolated and yet so many people know more about your current feelings than they know about people they meet during the day.

Valéria on 23 Dec 2007 2:09 PM:

Hello,

I stumbled across your blog via a Google search. I too have MS, and I, too, maintain a blog (see the "My URL" field of this comment) about my experiences with the disease. I just wanted to let you know that I'm including a link to your blog in my "Links to Blogs by Other People with MS" section; I hope you don't mind. I really enjoy your style of writing and am looking forward to continuing to read your work.

Warm Regards and Happy Holidays,

Valéria

orcmid on 23 Dec 2007 2:43 PM:

Dang Michael, I had this picture of you being off in the Cayman Islands with all of those characters.  Sorry for the symptoms.  I look forward to your bouncing back soon.

It's great to see you posting as consistently as ever even though you have scooped me on a pent-up post of mine that won't finish itself and I will post it before you scoop me even more.  Verily, I am grateful for your clear treatment of what I can only treat superficially and now also link to you for authority and further details.

Now I need to get back to figuring out what to do that will be nice for our anniversary/New Years Eve celebration.  Any advice?

Michael S. Kaplan on 24 Dec 2007 2:12 AM:

Hey John -- I wonder how well women would take it if I told them I understood what they go through then? :-)

I don't think I ought to risk it....

Michael S. Kaplan on 24 Dec 2007 2:15 AM:

Hey Dennis --

I haven't been to the island in years, plus I try not hang out with the characters too much any more -- they are a younger crowd, for the most part, and they are much rowdier than I would be now (though perhaps wasn't during prior visits?).

You have me curious about where you were scooped, in any case!

Michael S. Kaplan on 24 Dec 2007 2:18 AM:

Hey Valéria,

Mind? Not at all....

Though of course I talk about a bit of everything around here so hopefully it won't end up looking like a bad recommendation on your part if someone was expecting focused coverage of MS (multiple sclerosis) instead of MS (microsoft)!

Czes Kulvis on 27 Apr 2008 6:47 PM:

It is a personal choice - to live with MS or after MS.

My choice was to stop my MS so I am living for over 10 years now without any MS signs.

More - on pages of my web site: kulvis.com

To health and wellness -

Dr. Czes Kulvis

Michael S. Kaplan on 27 Apr 2008 8:18 PM:

The usual warnings about people who charge for "solutions" that have not [yet?] stood up to scientific scrutiny of course apply here, as always. Especially when it is in a comment to an unrelated post from months prior...


referenced by

2008/06/13 the front of my mind (by which I mean the back of my mind) is on the middle of my mind

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