April 22, 2004

Interesting MS Website

My brother sent me a link to a good website. I like the name a lot: Multiple Sclerosis Sucks, or "How to Suffer From a Chronic and Incurable Disease Without Appearing to be a Total Loser"

I spent a little more time with this site. The author is funny but he does not parallel me or my experience.

Most notably, everybody’s been great. People drive me mad with bad musical taste and stupid driving &c. But I cannot think of one person whose reaction to my MS or my mention of it was in any way inappropriate. People were shocked and saddened and didn’t always know what to say – but nobody offended me. He offers a humorous list of stereotypical reactions. Dang, people were honest; they were happy for what was good and disappointed for what was bad.

On the same token, I find people are very helpful. I don’t like to be “babied” but I know that folks who tend that way are trying to be nice.

Yes, I get advice that I don’t expect to put in practice, but I just smile and nod – kinda like everybody else on this planet. “Flaxseed oil, oh yes – I’ll have to try that…”

I have been told that it is better to be diagnosed later in life, he mentions the opposite. (Although one common thing about most stories is hat when one gets diagnosed, a bunch of weird things that could never be figured out all seem to fall in place.) I have had seizures, vision loss, lost appetite, and numbness over the last 10 or twenty years. I’d get better and stop thinking about it.

Man. I do not think “you’re gonna die…” Well, I am but probably not from this. It’s just something to deal with.

I am anxious (in both senses of the word) to begin medication. Trepidation because of side effects and unpleasant application (stick myself with needles?) And yet, my Doctor has hinted that he expects close to a full recovery. Even I am not that optimistic but bring it on kids, I’ll give it a try.

But there is some funny stuff and some interesting stuff on his website. There are a lot of MS websites and most of them just scare me. This one is pretty good.

Posted by John Kranz at April 22, 2004 4:30 PM
Comments

I liked this site but I think he talks too much about death.

Some people are obsessed with how others will view them with this MS thing (I've been reading sites and magazines). Some are obsessed with how they view themselves and what they are feeling. How am I feeling? How are you feeling? Do we get in touch with our inner MS demon? jk has MS. It could have been me but it isn't. I did hear one thing that I liked in a magazine. I'm not jk's care-giver. I'm his care-partner. I like that. We are not fighting this alone. We fighting this together.

How am I feeling? I went on a scooter ride today and it's a warm spring day. Riza feels that life is pretty much grand!

Posted by: Riza at April 26, 2004 4:01 PM

MS sucks is no longer up. MS must really suck!!

Posted by: Riza at May 26, 2004 4:04 PM