There are certain things about MS that I strongly dislike. The medications are high on the list. The symptoms are right up there too, and the prospect of permanent disability doesn't exactly thrill me either. But the thing that bothers me the most...more than ANY other thing...is the stupid ass saying that people with MS use. Here are just a few of my own personal pet peeves.

I have MS, if does not have ME! - (This is bullshit. I know it is supposed to be a positive sentiment, but its a lie. You and MS are a package deal, and when it comes down to the end, no matter who you are...MS will win. We dont have a treatment that is guaranteed, yes it has you...by the balls.)

MonSter -(Capitalization in the miTTLE of a woRd is obnoXIous. I doN't care if iT heLPs you PrOOve a pOInt.)

We exist to make sure it doesn't. (I call shenanigans MS society. I'm pretty sure you exist and so does MS...someone over there isn't doing their job.)

Keep us moving toward a cure. (I am the official MS Debbie Downer, but that doesn't change the fact that a cure is highly unlikely. There is no money in the cure...the last thing we cured was Polio. That's because once you cure people, they don't have to spend anymore money. We will get treatments, but that is all. And no matter how much we all move, the cure/treatments wont get here any faster.)

I am the fight against MS (Nope. Liar. You are someone living with MS. You can "fight" all you want, but it will win in the end. We can work on quality of life and other things, but if your MS decided to poke out its asshole head, its going to. No amount of little sayings and annoying ass myspace glitter banners will change that.)


Ok. Whew. Glad I got that out, I can't explain to you how much those stupid ass little sayings get to me. Maybe its just because I don't think that a saying or a glitter banner will do anything. I don't think those saying really keep morale high, and I damn sure know that they do not help me feel better physically or mentally. You can help very few things with hope pancakes and butterfly sausage.

There is one, however, that I do like:
Join the movement

This says something. Its vague yet direct. It makes a statement, it tells you what to do without all the stupid ass extra bullshit. 3 words that have so much behind it. Get involved, spread awareness, help others. A movement is a powerful thing.

Some random online dictionary defined it as "A series of organized activities working toward an objective ; also : an organized effort to promote or attain an end". That's the kind of saying I want to be behind, something that is working for the greater good, something that will produce a result.

Very few things in history get called a "movement". But some marketing genius at the MS society gave us this term to use. Spreading around a glitter banner will not spread awareness or hope for MS. Being apart of the MOVEMENT will.

p.s. Stop sending me stupid glitter banners on myspace. I HATE those damn things and I will deny every single one.

p.p.s. If you love stupid sayings and tacky glitter banners, and think I'm a total douche for talking shit about them, send me a email. Get it all out there, I'm telling you it feels good.

 


Comments

Leon Mols

Tue, 31 Mar 2009 09:30:21

It looks like you have the same approach as I do!

I've been accused of being a pessimist, but when I was diagnosed 3.5 years ago, I always told myself I would be in a wheelchair in the next 5 years. Well, a couple of weeks ago, I had to go fit a wheelchair. I can still walk, but it's so short a distance that I opted for a wheelchair, so I can still go out somewhere. Go to a museum, a zoo, a <whatever>...
I'm no pessimist, I'm no optimist, I'm a realist. And I dislike, NO, I HATE people that tell me to be more optimistical about what has happened to me.

Your story/stories make me feel I'm not alone anymore! Thanks for writing it!

I'm going to shut up now ;-)

 

Anne Pappas

Tue, 31 Mar 2009 14:09:27

OMG you crack me up! You missed one though:

"I am the face of MS".

That's another one I don't care for. I say, "No, I am frikking NOT."

Outstanding post!

BTW, am I the only one who caught the humor in the bowel movement post appearing right next to the "Join the movement" post? I guess 'A movement IS a powerful thing', eh? God, I just crack myself up sometimes.

 

Jackie

Tue, 31 Mar 2009 17:24:01

HAHAHA Anne.

I totally didn't notice the "movements" HILARIOUS!!

I totally forgot I am the face of MS. I really hate that one too. Thanks for calling the forgotten douche saying to my attention! hahaha

 

Kerry Lynn

Tue, 31 Mar 2009 19:45:54

One food a doctor suggested to me which changed my life and my bowel movements forever is Kellogg's ALL-BRAN BranBuds. It's made with Psyllium (magic, fucking magic). I'm on 300mg of Topamax per day for the burning in my legs (RRMS DX'd 3/24/00) it would be well pretty shitty. Back to the Psyllium--even tho I've actually come to enjoy the taste, I half & half it with a bowl of something interesting--these daze I'm into Kellogg's Special K chocolatey delight (dark chocolate bits) yumm ... Point is, Psyllium is like I said, magic!! Anyone with a "problem" ummm "going"...well, you'll wonder why you didn't check this out two weeks ago! Use daily for best results. [2 cents] <--mine FWIW

 

punkrockfairy

Tue, 31 Mar 2009 19:51:00

I'm relieved that other people have this same repulsed reaction to the "uplifting" catch phrases of the NMSS. I hate to be a hater, but I hate that site!

Yours, however, I enjoy. Thanks for the book reviews!

 

Kerry Lynn

Wed, 01 Apr 2009 07:08:57

One food a doctor suggested to me which changed my life and my bowel movements forever <<<<SORRY, MISPLACED COMMENT>>>>

 

Kerry Lynn

Wed, 01 Apr 2009 07:10:06

One food a doctor suggested to me which changed my life and my bowel movements forever THIS IS A F'D UP WEBSITE!! I MISPLACED THIS COMMENT!!

 

Kerry Lynn

Wed, 01 Apr 2009 07:44:12

I do have a COMMENT on this entry. I've been in a foul mood ever since I've read it. I'm angry I guess because I see YOUR anger. Freedom of speech gives you the right to be a cynic and spew your anger on others. The same freedom gives me a right to comment about it, well that and YOU as a web mistress, I suppose. You've made me not want to help young people like you any longer. I give up. Be a cynic. I just hope you're on a good MS drug. And I hope you stay on it. Reality is, you have MS. Check. Second, you're progressing. Check. You have to slow the progression of your disease. Being a cynic and being angry about it and posting this stuff isn't encouraging anyone, in my opinion. It's defeating. It's discouraging. It's deflating. It's wrong. It's anti-MS. Talk to me when you see a black hole on your MRI because you wanted to run a cool website and send out a newsletter that made you look all that. What. Ever. Yeah, so what if you didn't jump into therapy ASAP! I did get therapy right away--within a month of my DX--within six months of having any symptoms at all. My MRIs have been very, very good over the past nine years. No black holes, no additional lesions, very little progression, if at all. I'm very lucky but I still suffer, a lot at times. You don't know. The younger you're DX'd with MS typically, the more you're in for in the long run. I was DX'd when I was 40. You have no idea... None. Keep being a cynic. You'll look back at this in 10, 20 years, when you're all grown up and wonder why you didn't get on Avonex or Rebif or whatnot back in 2009. Girl, you have no idea. I'm so sorry for you. And I'm really pissed that I care.

 

emms

Wed, 01 Apr 2009 10:52:04

I can't imagine a world where everyone with MS felt the same. Imagine having a disease that is so different for all, yet we all feel the same way. Impossible!

I'm looking forward to reading back in your site, and reading forward too.

 

HezzaC

Wed, 01 Apr 2009 11:24:19

This one has made me smile. It's made me smile because it shows that each of our approaches and attitudes to MS and all that goes with it are as varied as the symptoms that we each face.
I am one of those who does say "I have MS but it doesn't have me" - for me this rings true because yes MS affects me physically, sometimes mentally, but underneath I am still me and always will be. No matter what the disease does to my body it will not have my soul. Of course my attitude could change as the disease progresses and if it does that's fine. I also use the term MonSter from time to time when it suits me.
If there is one word associated with MS that annoys me it's "sufferer". I have a violent and possibly irrational dislike of the terms "MS Sufferer" and "suffering from MS". Yes I have MS, yes it's not nice and yes some days I feel crap but I am not hanging around "suffering" I'm just getting on with the life I've been given. Waffle over...looking forward to the next installment.

 

Anne

Wed, 01 Apr 2009 11:47:43

I've been known to tell people I "live with" MS. I also live with two dogs and a cat and a boyfriend. None of those things on their own define me.

My mosh pit days are over (who wants to see a 47 y.o. woman in a mosh pit anyway), can't climb a ladder to clean out the gutters on the house (that's why I keep the BF around) and can't stand up all the way through a marathon Springsteen concert anymore (I've spent enough on him over the years to put one of his kids through college I'm sure).

Fist bump to HezzaC!

 

Rachelle

Mon, 05 Jul 2010 12:11:54

LOL! I live with cats, and they totally own me. :)

This is old, but since you linked it in your other blog I have to say THANK YOU. I hate all of that crap. I have a really hard time believing those cliches make anyone (not in total denial) feel better.





 



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