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Hollyk is Feeling great! Interested Christian, mother of 6, Executive HR Manager, horse lover I love children! I am married and have 6 wonderful children; my... Send Message Subscribe: Hollyk

Monday, September 28, 2009
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I'm not my normal happy self today...life really stinks sometimes and as much as I want to stay positive; I'm going to allow myself a little pity party. It is bad enough going through this hell of Limbo; but to top it off are stupid people. How is it for MS patients or even Limbo patients; that...

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You're Not Alone
KJ
Tuesday, September 29, 2009 at 06:19 PM

I think I overuse the words in the subject line sometimes, but I hope you know I feel that way. I (and I suspect very many others) are going through much the same thing. I just received a lecture on how I "can't remember anything I'm told. No one knows better than I that I don't remember things and mess things" up. I'm impulsive, uncoordinated, short-tempered, and forgetful. (What a combination!) On top of that my neurologist just called a few hours ago to say that my lumbar puncture results were normal and there's really "probably" nothing wrong with me. Is that good, or bad? Oh well.

Please feel free to vent. Pity parties have their usefulness.

Take care,

KJ

re: You're Not Alone
Hollyk
Tuesday, September 29, 2009 at 10:06 PM

Thanks KJ; Don't despair...all neurologists are not created equal...unfortunately in the military, you don't get much choice. Can you still ask for another opinion? Having a normal spinal does NOT rule out MS. Even the MS Society has commented on this...I know that at some point; our symptoms will over run and it will become neonic for them to see nice and bright!

One of the best things that my "regular" doctor did for me is to have me take the neuro psych test. Now, because of that, I don't get blown off when they can't find something. Although, I know that they are getting very frustrated as I am.

I pray that we all get some answers soon.

I'll join in
Jeff Ü
Wednesday, September 30, 2009 at 12:33 PM

Holly,

I know exactly how you feel and I'll join you pity party! I am a retired CG officer and a father of 3. Whether it is my colleagues at work or my family, I am constantly having to remind them that even though I may look like the ole me, I'm not...I can't do the things I once did (e.g. running, sports, motorcycle riding, multi-tasking, etc.)...just because I'm sitting on the couch doesn't mean that I'm lazy, it means I don't feel well and I'm hoping to turn that around.

I'm trying to find a graceful way to exit the workforce to allow me to focus on my health and wellbeing while keeping the home and family together...not looking good...seems to be one or the other...anyone have any seasoned advice?

Thanks!

Jeff

re: I'll join in
Hollyk
Friday, October 02, 2009 at 11:47 PM

I hate feeling like I have to tell people I'm not lazy; I have MS. Sometimes it is worse when a co worker says; my friend has MS and they don't have that problem or something to that extent. As if the fact that our symptoms don't match somehow makes me some kind of exaggerator or liar.

I'm sorry that anyone has to go through this...MS is cruel in so many ways; but this one is a hard one.

re: re: I'll join in
Sherry O
Sunday, October 11, 2009 at 10:44 PM

Judgemental people should somehow be made to spend a week in our shoes; waking up, not knowing whether the pain will be worse, if I can remember my drs. appoint., eventhough, I have it written everywhere;feeling useless because we can't do those things that largely defined who we were; trying to feel like a somebody in the face of those who make those comments. "you look fine." but, the all time favourite, "I know someone with MS and they....."

To family members that I've spent untold $'s on books, memberships to both Canadian & U.S. MS organizations, websites galore. This is when I am truly happy I live 300 Km's away. Dealing with aquaintances and mere strangers thinking and making those comments is one thing; I wouldn't dream of making those judgements of someone who has heart issues, cancer or any illness that is immediately apparent. Family should know as much as we do or at least keep thoughts to themselves. When your own mother says, "but, you said you were having good days last week, what made it change?"

Pity parties are part of this disease. There are just days when you can't pull out the masks people would rather you wear. At the end of the day, we have to live wirh ourselves and we are still the same people, we just happen tohave MS!

SherryO