Could you stop being so horrified and be relieved with me?

The BBQ Pit
1

I will grant you that this is not the standard pit rant, but this doesn’t really fit anywhere else.

To some of my RL friends…

Could you stop being so negative about my diagnosis?

For four years I have wondered what was wrong with me. I wondered why I was so tired, why my right leg, arm, and hand were ceasing to work right, and balance was a thing of the past. I finally found out that I have MS.

Two lesions. One on my pons and one on my spinal cord.
I’m finally getting adequate treatment and am responding well. I have a good neurologist and with the interferon based medication, I will be mending quite well.

Yes, it is a permanent facet of my life, and can have ongoing consequences.

But… I finally know what is wrong and am getting treatment. The relief I feel is incalculable. With the steroid treatments alone, I can type again, and am gaining in mobility, balance, and dexterity that I had been missing for over a year.

Life is finally getting better, there is now a concrete way to explain to my professors on why I was missing classes, and I am healing.

Be happy for me. This is no longer a hard to treat or untreatable disease. This will not slam me in a wheelchair or send me to the same sort of premature grave that my Aunt Barbara went to. I can live a long and happy life, and with the medications, there is every chance that I will not get more lesions.

I don’t have lesions on any of my cortexes, and it has not affected my memory, recall, or vision.

Be happy and grateful with me and spare me the gloom and doom. If I’m not being that way, there is no reason for you to be.

2

All riiight!! Hastur has MS!! Way to go, dude!!

Not what you had in mind? :wink:

3

PS: Thanks for scaring me with horror stories about my impending spinal tap. Not only did it diminish my ability to sleep for the anxiety that was created, it was pointless.

It wasn’t bad to get one, and the light headaches I get while waiting for the spinal fluid to regain the former pressure is nothing in comparison to the sinus headaches I got in the midwest.

Schmucks.

4

I prefer that to fatalizing my disease. It is much better than acting as if I have a foot in the grave.

5

I agree, I don’t know why people scared you about that. Spinal Tap was AWESOME! I got headaches too because the sound was turned up really loud, but that movie was funny as he…
… What?

6

You’re right. It’s better to have a diagnosis and treatment than no diagnosis and worsening symptoms.

FWIW, I admire your attitude. Way to go. (really!)

7

If I learned anything from The West Wing, I learned that you should cover up your MS, go into public office, become elected President, and once news of your condition leaks, decide that you’re going to run for reelection anyway. Since you’ll be getting great Nielsen ratings, of COURSE Aaron Sorkin will find some way to write you into the White House again.

8

Hastur,
Remember that when people act horrified at your diagnosis, (IMHO) it’s usually because they are afraid for you and afraid for their own seemingly fragile lives. Most people don’t really realize (until a loved one is diagnosed with a disease of a serious nature) that their lives could be changed tomorrow due to an accident or illness.
You having MS makes them face it every time they see you, so they express horror at your MS, rather then understanding the relief you finally feel.

Take care!

Zette

9

Yeah, what Zette said. Facing someone else’s illness forces people to also face their own mortality. FWIW, congratulations on having a diagnosis - living sick without knowing what’s wrong is a major stressor, and being able to put a name to the problem is truly a huge relief. Not to mention getting treatment and responding positively to it, and regaining some former abilities. That is fabulous news.

People facing someone else’s bad news (like a friend’s serious illness or the death of a loved one) often don’t know how to respond, and act all serious and frightened, or stay away alltogether, for fear of making light of the situation or saying the wrong thing. It sounds like your friends are greiving about your illness, and don’t know how to move on to the next step, acceptance. If this is a real problem for your pals, you may want to find a grief counsellor in your area to talk them through the grief process, and help them learn how they can be supportive and helpful to you now that you are diagnosed, instead of just being downers.

10

Also, unless you’ve already explained this to them, your friends may not know that with the new treatments available, MS isn’t necessarily always as debilitating as it once was. All I knew about the disease (until I read this thread) were vague memories about the Jerry Lewis(?) telethons that were done every year to raise research funding. And of course the people presented there were really bad cases.

Make sure you educate your friends about your situation and the treatments so that they’ll understand, can deal with it better and can provide the type of support you need.

I’m glad that you’re responding to treatment and are dealing with this in a psychologically healthy manner. May you have continued success in living with this disease.

11

Knowing what is going on in your body and how to deal with it is half the battle. The not knowing is what is scary. My niece is 23 and also just discovered the end of last year that she has MS, and she’s also dealing with it much the same as you. She’s trying to make her life as normal as possible. I admire you for your spunk and determination not to let this rule your life. You’ve already won the battle. Good luck and the best to you.

12

Hey, MS isn’t a death sentence.

Tell 'em to go fuck 'emselves.

Yeah.

:smiley: Elly

13

Jerry Lewis raised money for muscular dystrophy, not MS.

I am so sorry to hear about your diagnosis, Hastur. My mother has MS as well, and while it’s difficult to watch her physically deteriorate, her mind is still (mostly) intact.

Besides, MS research is going forward at a tremendous pace and there are treatments that didn’t exist five years ago. So, there’s a lot of hope.

Robin

14

Was it turned up to 11?

15

I’m relieved for you, Hastur, but still, hang in there, buddy.

However, you ain’t getting out a’ Phantom Creeps! Get into that The-A-ter!!!

Mwha hahahahha!

16

I don’t know if this sounds weird or not, but have you tried joking about it with your friends? Sometimes people really loosen up once they see that you’re doing alright and able to make a joke about a condition that scares them. Or not. Feel free to ignore me if you think I’m talking out of my butt.

17

Hastur, old mate, though I’m disturbed at your diagnosis I certainly understand your sense of relief at having one.

I work in a field of chronic illness and I have a chronic ilness myself (chronic in the sense of “on-going”). There are many things about chronic illness that are different from ordinary forms of illness, and one is the irritating burden of having to educate the people around you.

They are often ignorant, for which I suppose we can’t blame them. They often express ignorant (or perhaps better “uneducated”) opinions at times when you have the least strength or energy to deal with them.

But the good ones will learn and can then be of real help at difficult times.

A book that our organisation recommends to help people focus and deal with the challenges of chronic illness is “Living a Healthy Life with Chronic Conditions” by Lorig, Sobe and Gonzalez, Bull Publishing, California. Your local library or bookstore may have it - it’s worth a look.

Best wishes with it. It certainly sounds as if you are handling it well.

Redboss

18

But you know what will (eventually and I hope not soon) kill you. Don’t you find that comforting? :rolleyes:

If you ever need one, Warren Weith, former columnist for Car and Driver and MS dude, ran a test of sportier chairs some years back. But it was before the REALLY sporty ones came out. They make a tough chair these days! But the electrics are still uncool. We need to design a cool one. Jet black with flames on the battery box. Maroon suck’n’roll upholstery. Wheels with baby moon hub caps and chrome trim rings.

Hastur, buddy, I’m glad you know what it is and I’m glad you came down with it now rather than twenty years ago. If you wanna yell feel free to yell at me.