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Member
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Join Date: Jan 2008
Location: Southern California
Posts: 308
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Member
Join Date: Jan 2008
Location: Southern California
Posts: 308
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Oh wow - Thank you!
I woke up this morning not knowing if anyone would've responded. I know my post was a "downer" (probably to some anyhow). But there were many responses! 
You all have such great things to say - and for me to think about and hold onto - so THANK YOU so much. And I'm glad you pretty much thinkt hat statement about MS doesn't have you is complete crud at times. The MS totally has me when it wants to. When it tells my brain lights out - it's lights out - and I can't move - I'm down.
I just called the doctor - and said I wanted to start the ball rolling for Tysabri NOW, I don't want to wait - and asked if there is anything else I can do for the symptoms.
Does anyone know how often one can do a steroid treatment? Funny, I tried finding an answer on the net about it - but haven't....but maybe I don't want to find it - for fear it won't say what I want it to! LOL 
I've heard that it can take a couple of years for things to start to feel real and to adjust to the dx. Sheesh - it's only been 5.5 weeks - and seriously - this is ridiculous already!!
When I found out - so many people popped out of the woodworks to say they all knew someone who had MS (the math doesn't add up to me - since they say only 400,000 people here in the US have it - and I'm in the US)...but anyhow, they all know someone who has it who is doing so wonderful, blah blah blah....and there I am laying in my bed hooked up to an IV...and do I want to talk to this person. Um.....NO.
Not sure how talking to your sister's friends cousins aunts boyfriends mother who has MS who climbed Mt. Everest is going to help me! Again - one of those "MS doesn't have me" - besides, I'd probably only come to find out that she didn't have MS, but some other random disease anyhow!
My thing is - b/c this disease doesn't follow any rules - hearing about someone's story before I know what mine is going to be - doesn't necessarily help me! The doctors gave me a crap prognosis. Of course, like many have said to me - "How the heck can they know?" - good point. I wish I could hold onto that thought - but their words are still stuck in my head....probably fell into one of the holes up there and can't get out. 
I just wish I knew how to get thru this exacerbation (which seems like a funny word for my first episode!)...but anyhow, am I just sposed to stay in bed until I feel better - is going out and doing things going to make it worse? How do I function? Sometimes I'm able to get one or two things done before I need to completely pass out (and that's with 400mg of provigil!!)....but I was feeling great on Sunday morning...went to brunch with friends...got in my car afterwards - and couldn't move - I was SO tired - I couldn't fathom driving. I had to sit in my car for 25 minutes - just wishing I could get myself home. It was awful. So how do I function thru this? I live alone. I don't have family. I only have a few friends - who are already burnt out (for a while I couldn't drive - so they did that - at least now when I go out - I can drive if it's daylight - for the most part). I just don't know how I'm sposed to do this. Neuro told me three weeks ago that the exacerbation should only last a total of two months from onset. Then I read on here and other places, that it could even be up to a year!! Shoot me now! (why is there no lil smiley icon with a gun to its head? lol - kidding)
So - how do you do it?
(and by the way - not only do I have a psychotherapist - I am a therapist myself)
~Keri
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