Sorry to say it, but MS sucks

by Michael S. Kaplan, published on 2004/12/16 02:19 -05:00, original URI: http://blogs.msdn.com/b/michkap/archive/2004/12/16/316644.aspx

I have been dealing with MS, this 800-pound gorilla, for over a decade. It started as a casual thing and it stayed with me like a virus. It insidiously became a bigger and bigger part of my life. Then, a few years ago, I got a purple badge and it became a fulltime issue that I could never get away from. I wake up every morning numb from dealing with this source of most of my frustrations and probably all of my pain. I can't remember the last time I wasn't dealing with it, and I'll probably have this monkey on my back for the rest of my life.

Now that I have your attention with that eye-catching headline and first paragraph whinefest....

No this is not a tell-all about a full-time Microsoft employee slamming his employer.

I'm talking about Multiple Sclerosis. A disease I have been suffering from for the last 15 years, give or take (the purple badge is a UWMC badge, not a Microsoft CardKey).

I think the last few weeks watching The West Wing on NBC, with the first MS exacerbation on the show that was even close to real, made me realize going a bit more public may not be the worst thing. I mean, I doubt we'd elect someone with MS to be the president in real life, but it is still kind of hopeful. And just hours ago on the show, the President was told he had an 85% loss of function in the nerves to his legs (tested by somatosensory evoked potential, a test I have both gotten as a patient and given as a technician). Even as he is clearly having problems he is still fighting to say he is not. Something I do constantly, though not as cleverly, as Jed Bartlett does.

I was not quite as happy with CBS last night, where Judging Amy's Amy Madison Gray (well played by Amy Brenneman) presided over the case to decide whether a depressed woman with multiple sclerosis is well enough to care for her ten year old son (they decide she is not at the moment, but they will see her back in a few months to see if the medication changes the situation). I have not been there, but I know people who have. I just wonder how many people will be declared unfit mothers as a consequence.

In the meantime for me, lots of stuff is hard -- even easy things like typing (thank you Dragon Dictate!) and walking (thank you, Pride Mobility scooters!).

Now me saying all this is neither as impressive nor as cool as the same sort of announcement from the likes of Clive Burr, Annette Funicello, Teri Garr, Lena Horne, David Humm, Barbara Jordan, Jonathan Katz, David Lander, Roger MacDougall. Richard Pryor, Alan Osmond, Richard Radtke, Doug Robinson, Ronald Rogers, Dean Singleton, Cathy Weis, Paul Wellstone, or Montel Williams. And not only because I am not a drummer for Iron Maiden, a mouseketeer, an actress, a singer, a quarterback for the Raiders, the first African-American from the South to go to Congress, a comedian, Squiggy, a British playwright, an actor/comedian, an Osmond brother, a scientist/mathematician, a novelist, a concert pianist, a newspaper magnate, a dancer, a former Senator from Minnesota, or a talk-show host.

So I'll probably post stuff on MS (Multiple Sclerosis) from time to time, in between all the posts on international issues related to MS (Microsoft). I promise to try to keep the "MS" puns to a minimum -- its bad enough dealing with two different crowds with entirely different ideas to what the letters MS mean without inflicting the issue on the people who put up with my rambles. That would be a tremendous MStake.

Great post! Like you and Bartlet, I always say nothing is wrong, when quite obviously it is. Hey, it's my coping mechanism.

I am interested in speaking with other MS people

Please make available other MS people that would like to share storries

Not sure I know what you mean -- you want me to take some people with multiple sclerosis I have in storage and have them tell stories?

This is a blog, not a forum....

I have MS for 18 years, atypical case, still do everything, pain is my main symptom, taking pain meds for years. No depression, some limit to functionality (can't ski black diamonds anymore), but still ski green and blue trails. Eye problems every now and then, love to shoot pistols, legally of course. Take your fish oil and Vit D MS Peeps.

Holey Moley Batman!

I thought I was the only insane ranter!

Whooohooooo, some of my own kind here! There are survivors

Thank you for your words!!! I say not only does MS suck but F-U- MS.... I was diagnosed at 23 and have been dealing with it for over 3 years now. I don't really know how to stay positive about my situation when I feel so bad everyday. Thank you for your words, I say it again because no one understands the heartache that MS brings me on a daily basis. MS SUCKS!!!

I am sick of peeing all over everything. I have m.s. for 32 yrs and sometimes deal with it ok but tonight I am tired of it.

I hear you. And I think everyone has had bad evenings. The key is getting through them....

My husband now 46, was diagnosed 8 years ago and now he lies in a bed very sick with hospice care. He will die any day now because of the his body shutting down from pnemonia. MS sucks, he loses, my son loses and I lose - there is no happy ending to this story. I am sad I am losing the best thing that ever happened to me. God Bless all those who who ever had to hear it said "You have MS"

We all need a place like this to vent!!! I was diagnosed almost 20 years ago, when I was 20 years old. I truly believe that my vegetarian, low saturated fat diet has helped A LOT. I haven't taken fish oils - what do you recommend?

Thanks!

I have a few vegan friends who would love if they could even get me as far as "vegetarian", though it remains unlikely....

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