Does anyone else feel this MS has stolen their life?

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Does anyone else feel this MS has stolen their life?

Postby catfreak » Sat Jul 19, 2008 7:27 am

I had a bad week.

I had to take 2 tests at work so I can get a professional certification that is required by my employer. I passed the first test and failed the second. I am a perfectionist and expect myself to always come out on top. I know my profession, I am the go to gal. I failed.... I have been doing this for years and if I can't pass this certification my employer may lose confidence in me.

MS has taken away my ability to think in the moment and solve problems. I hate this.

Does any one else feel this way??

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby robbie » Sat Jul 19, 2008 8:00 am

Does anyone else feel this MS has stolen thier life?

i don't know about others but yes and then some
Had ms for over 19 years now.
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Postby gwa » Sat Jul 19, 2008 9:20 am

Yes, I do believe this disease has stolen much of my life. There is nothing good about having MS of which I am aware.

gwa
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Postby Lyon » Sat Jul 19, 2008 10:02 am

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Last edited by Lyon on Sun Nov 27, 2011 6:34 pm, edited 1 time in total.
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Postby VodooDoll » Sat Jul 19, 2008 11:07 am

It has CHANGED my life, not STOLEN it.

Many of the things I use to be able to do are either no longer possible or require extra planning for the “what if’s” of my MS symptons.

Not sure how much longer I'll be able to keep working 40 hrs a week and have come to accept that. No longer look at working hard for my next promotion, just work for that next paycheck.
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Postby robbie » Sat Jul 19, 2008 11:28 am

it all depends on your physical state, if that part is not bad then obviously your life can continue mostly the same.
Had ms for over 19 years now.
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Postby catfreak » Sat Jul 19, 2008 2:31 pm

Robbie you are right!

I was having a pity party for myself and I need to suck it up and just be glad I am still able to walk down those 2 flights of stairs to get to my office. Some day I may not be able to do that and that day will probably come sooner than later.

Thank you for reminding me life goes on.

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby CureOrBust » Sat Jul 19, 2008 7:56 pm

I feel this way, and if not now, in the future. To me using the word "changed" or "taken" makes no difference, its definitely not "improved" my life.
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Postby jimmylegs » Sat Jul 19, 2008 8:29 pm

catfreak everyone who has the honour of being a member at thisisms is entitled to the odd pity party.

i hope you don't have to deal with your current frustrations much longer!

i'm still pretty new to my dx, only being 2-and-almost-a-half years in, but i feel like it was a huge benefit (at the same time that it sucked) to get dxd. it smartened me up a whole lot wrt responsibility for my own health, and i didn't know even a tiny fraction of what i now know about biochem. (i actually just googled 'biochemistry multiple sclerosis' for the first time and that's opened up some interesting avenues for investigation).

prior to dx, i was so anti-supplementation that no-one who knows me here would be likely to believe it. this whole experience has made me up the ante in ways i might not have otherwise. i've managed to accomplish major improvements based on what i've learned, and have surpassed my prior healthy-state accomplishments including now being able to say i swim a kilometer (not a huge deal but my previous max had been about 14 laps or roughly a third of a klick) and passed my level 2 ski instructor's certification 2 years after dx.

that said, i continue to believe that 'ms' is a label for a variety of differently-caused states and that my version doesn't apply to all (or even many) patients.

CF i have had many positive and marked benefits from supplementation. mind you, i have a crystal clear rationale for its having helped in my case. if you feel that malnutrition (stress-related or otherwise) might have any role in your current situation, i can tell you what helped me and what might help you out too. let me know :)
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Postby Terry » Sat Jul 19, 2008 8:34 pm

I raised 4 kids as a single mom, and very soon after they were all grown and out of the house, I was dxed. I had been using the word "fun" constantly- everything seemed new and everything was possible. I thought the hard part was over. The dx pretty much took that word from my mouth. It definitely took that attitude. Did MS steal my life? No- not yet. Did it steal my hope? Yes, probably.
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Postby marcstck » Sun Jul 20, 2008 1:18 am

Stolen my life? Well, that's putting it extremely politely...

Six years ago I was an executive in a multinational music/entertainment conglomerate, with my fingerprints on products that reached the eyes and ears of millions of consumers worldwide. Walking into the production studios where I worked, I might have brushed past Tony Bennett, Shakira, David Bowie, Victoria's Secret models, or any one of dozens of major entertainment figures. I took full advantage of living in New York City, eagerly seeking new places to satisfy my culinary, sensory, and intellectual cravings. I'd married a wonderful girl just a year before.

Now, in what seems like a blink, here it is a mere 72 months later, and I've been on long-term disability for 18 of those months. My right arm and leg are useless, profoundly weak and twisted with spasticity. My left side is starting to follow suit. Five minutes after drinking a cup of coffee or tea, I'm apt to piss myself if a bathroom isn't readily available. Last Friday, a power wheelchair was delivered to my house.

I have PPMS, and there are currently no drugs or therapies available that are known to arrest this disease and its insidious progression. Based on the speed at which my disease has chewed me up thus far, I estimate I'm 12 to 18 months away from being bedridden. As an added bonus, the massive doses of steroids that were given to me in an attempt to stem the tide have resulted in my getting avascular necrosis in both hips and both shoulders, so I'm now in constant pain as well. I found out last Tuesday that the heads of both of my femurs have collapsed as a result of the condition.

I'm hopeful that recent advances in neuroregeneration and neurorepair give me at least a glimmer of a chance at maintaining some semblance of a productive life. Mesenchymal stem cell transplantation, should it ever make it to a clinical setting, may be all that stands between my remaining viable and becoming a brain imprisoned in a useless body.

So, count your blessings where you can find them. You can walk up two flights of stairs to get to your office? Rejoice. You still passed one out of two tests? Celebrate the victory.

I'm not saying this to diminish the impact of your disease, as I too well know that the psychological uncertainty of where this disease might take you, and the horrifying experience of watching yourself become gradually diminished, cannot be disregarded, or shunted aside like some petty annoyance.

But each day that you wake up,and can walk unaided to the bathroom without wincing in pain, while dragging 50% of your body along the way, and leaving a trail of droplets as you go, is a day you should thank the universe for, and a day that you absolutely must pack with all the life and joy you can muster. Live each minute, each second. Embrace this day, as it's the only today you'll ever have.

I'm thankful that I still have the wherewithal to make this post, albeit with the use of voice recognition software. I still have wonderful friends, a caring family, and a wife without whom I would be completely lost.

But life as I knew it, and expected it to be, was stolen from me in a most obscene mugging. Multiple sclerosis is a larcenous felon, the traitor within. Spit in its face and do your best to live your life regardless. And if the disease does eventually take you down, and I fervently hope that it doesn't, may it take you down with both of your fists swollen and bleeding from the mad fight you've waged against this fetid malady...
Last edited by marcstck on Sun Jul 20, 2008 12:26 pm, edited 2 times in total.
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Postby marcstck » Sun Jul 20, 2008 1:18 am

duplicate post
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Postby Loobie » Sun Jul 20, 2008 5:35 am

Amen to all of the stories above. Mine is no better or worse. As I told Robbie one time, MS is a bitch because it steals your life, but leaves you around to watch it in living color. The funny thing about it is I wonder if anyone ever looked to lifestyles when figuring this MF out. I mean it seems like all of us were decent achievers and had such strong vitality. I don't know, maybe I'm being nihilistic on that one, but it seems like we all were high energy people. Maybe because my exposure to MS has been boards like this and even slowed up we are still doing all we can by participating here and doing what we can.

That may be, and probably is, a completey useless bit of info., but I've always felt that way in the back of my mind. This doesn't seem to pick on the slovenly. Like I said, I could have completely missed the mark on that since we are the ones that are still striving to learn and be on top of any breakthroughs and the slovenly are, well, maybe not so predisposed to do that so I don't see a huge chunk of the MS affected on places like this. After reading this it kind of read like I'm being snobbish or something, but it seems like to a man or woman on here that we all had been kicking some ass before this chopped our legs out. You guys know me, I think it, I write it, but I have always thought that way to a degree.
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Postby catfreak » Sun Jul 20, 2008 6:20 am

Thanks everyone,

I am so glad I found this site. The things I say here I have a hard time saying out loud so it helps to write them. In my world I have to smile and say "I'm fine". If you really try and tell people what is going on they say "oh I know how that feels or It's just your age"

I'm sorry but no it's not my age and no you don't how how it feels! You see that would be rude and insensitive to say to someone. So I just smile and say "I'm fine".


Loobie, I am an overachiever, or maybe I should say "was". Always had to be the best, do the best. I did not go to college so I pushed to learn everything about every job I did. I could even do others jobs better than they did. I went to Bankings school at Vanderbilt with 2 guys from work and they both had Banking degrees, I made better grades than they did, proving I should make the same money they did. (ha!)

Marcstick, Wow, I pray that there are many advances in research and cure for this monster. What has happened to you is not right.

Terry, I raised 3 boys with the help of my hubby and they are all grown. I'm glad this waited until they were gone from home and do not have to watch me go down.

Jimmylegs, I am very interested in supplements but OMG where to begin.

Thanks again all,

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby gwa » Sun Jul 20, 2008 7:05 am

marcstck wrote:

I'm hopeful that recent advances in neuroregeneration and neurorepair give me at least a glimmer of a chance at maintaining some semblance of a productive life. Mesenchymal stem cell transplantation, should it ever make it to a clinical setting, may be all that stands between my remaining viable and becoming a brain imprisoned in a useless body.


marc,

One company I am watching is Neuren Pharmaceuticals from Australia. They are making strides in traumatic brain repair for injuries and stroke victims. Their first product is going into phase III trials now. The FDA fast tracked them and stopped Phase II trials so they can get their product to market faster.

One of their products is geared to repair brains in multiple sclerosis patients. I can't remember what they call this drug. The one on the fast track is Glycomate or Glypromate ( it has been a while since I went to their site and read the info). I have more hope for what this company is doing than any other research I am familiar with now.

gwa
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