NeuroTalk Support Groups - I'm hating this (disease)

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- - I'm hating this (disease) (https://www.neurotalk.org/multiple-sclerosis/38842-im-hating-disease.html)

yeah, me too...

the MS diagnosis was actually sort of a relief, as the first neuro said "Guillian Barre' or rapidly ascending polyneuropathy" or some-such polysyllabic jargon.

terrified me, that I might soon be in a hospital bed, paralyzed, and having trouble taking a BREATH.

I was just 3o, with three young children, and a single mother, living FAR from family, and not yet made many friends in my new neighborhood, when Optic Neuritis and partial blindness struck, out of the BLUE... with horrid headaches.

"We don't know what it is, just have to wait and see...."

a few years later, my feet went numb, and that numbness spread up and Up and UP.... and that's when the doc mumbled the stuff about Guillian Barre'

oh yeah, and MS really DOES have me! (another person mightily PEEVED by that phrase, checkin' in!)

welcome to NeuroTalk, Keri... and feel free to lean on us... we understand how ya feel.

:hug:

PS: next week will be 20 years of having MS, counting from the ON in '88.

Keri,
You have come to the right place, we are all here for you. There are so many wonderful people, all you have to do is give a shout and someone will be ready to greet you with a hug and a shoulder to lean on. I will keep you in my prayers and if you need to vent or just want to chat feel free to PM me.

:hug: Susan

http://i99.photobucket.com/albums/l2.../medicine1.gif

*I'm another one that hates the phrase MS doesn't have me....like h*** it doesn't! :mad:

Hi Keri,

I can empathize with how you feel right now. Nothing makes sense, you're completely overwhelmed and there isn't an end in sight.

We've all gone through this at some point in our disease. You were totally blind sided with the MS diagnosis. Ty might be a good med for you.

I would also suggest that you find a local Psychologist to talk to. Nothing like letting it out to someone who will listen and help you through all of this. It's well worth the time and investment.

Many of the questions you ask have no answer. We are all different in how we are affected. You've just had all of this "dumped" on you and all at once. No time to mentally prepare and adjustment to the diagnosis will take time and patience.

Know that we are all here for you no matter what. We're all concerned for you and want to support you any way we can. Ranting here and putting it in writing is a great therapy plus you get feedback from people with the same experiences.

You will be going through the same seven greiving stages as if you experienced a death in the family close to you. Reseach this and be prepared for it. You're NOT alone! :hug:

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! :holysheep:

:Thanx:

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 :p

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. :Slip:

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

Okay. Take a breath :):).

I still go out when I feel like crap. I don't drive for the most part. I don't trust my own judgement some days.;) I haven't worked since November; I'm on short term disability. I have broken down and bought a used scooter. I'm not thrilled about riding it around town, but I have to do something to get out. I'm only 41. I live in an area with sidewalks everywhere and I'm close to every kind of shopping you could need.

Do you live somewhere that has public transportation? I know that stinks (literally and figuratively:rolleyes:), but you might want to look into it. Sometimes you can get discounted rates because of crappy diseases like MS. There are few perks to this illness. I would take advantage of them if I were in your shoes.

Do you have a handicap placard? If not, get one. It really helps so you don't have to walk really far and wear yourself out.

I don't know how often you can have the IV steroid treatment. Start a thread asking about it. I'm sure somebody will know:)! Sometimes it just takes time to get better. Give yourself a break. Don't expect so much from yourself. I've done this in the past and it only ended up making me feel worse in the end anyway.

I'm so sorry you don't have any family to help you out :(. Just work on one problem at a time. That's all we can do. :hug: :hug:

I hope you get the Tysabri stuff taken care of. At least you'll feel like you have a little bit of control. In my case, that's the worst part of this. Not having any control. I hate it.

Have you contacted your local chapter of the National Multiple Sclerosis Society? They have tons of information. They've helped me out on numerous occasions. :hug::hug:

It does get better (sort of) once you've gotten over the initial shock. My thoughts are with you and we're here to help any way we can. :Wave-Hello:

Hi Keri,

Since you're a therapist you can save all kinds of time and money just by "TALKING TO YOURSELF!" :eek:

Is that a bargain or what?

Just take things as they come and don't obsess about it. Believe it or not, and I'm sure many here will agree, live goes on and so will you.

Peace be with you. :hug:

What Snoopy said!!!

hang in there...as hard as it is to believe, it does get better!

hi keri and welcome,

i'm sorry for your dx of MS.
just know that what you're feeling is normal.
but that doesn't mean that it's fair. you don't deserve to have any of these problems.

i take copaxone for the same reason. hx of depression.
i used to have bad site reactions but they've gotten a lot better with time.
and i've experimented with the depth of the autoject.

just know that we're with you in spirit.
please let us hear from you regularly.

best,

Hi Kari! Like everyone else here, I'm sorry for the reason you found us, but I'm glad you found us!I totally understand the feeling of being blindsided by this dx..Nobody in my family (that I know of) ever had it, never even appeared on the radar. And you're right, it's funny how I never knew anyone with MS until I was diagnosed. Then they started popping out of the woodwork! :Crowded:
The thing I hate most about this disease (and there are SO many things), is that nobody can tell you how things will work out. What's the course of the disease? How long will an attack last? Will I end up in a wheelchair? Or worse? Nobody knows..I was dx'd PPMS 3 years ago, and am doing relatively well..Still walk, still work, still take care of my family (though none of these things as well as I used to)..But it is like walking around with a giant boulder poised over your head, waiting to drop (or not, as it wishes). It's been said here before, and it's Oh So True, that control is just an illusion. I've decided to look at that as a positive, though. At least I KNOW it's an illusion. I can let go of the idea of being a "control freak"..LOL No control, but still a freak :D. Just keep talking, hold onto your friends, and take advantage of the new friends you'll meet here. They're among the BEST!

Keri, bless your heart. We have all felt overwhelmed by this disease at somepoint or somepoints. You are NOT alone here. You will make some board buddy friends.

Being in bed is the PITS. I had an exacerbation that totally wiped me out last year - in the bed, not able to care for myself....my spirit left me.

I had to find it again. And a year later I'm happy to say that I'm self sufficient again...

I found comfort in reading facts about the disease and reading some uplifting stories written by MSers...I also loved and still do to read comedy....Find the book - Coffee in My Cereal by Lorna Moorehead...it is about her first 5 years with MS and it is really funny...

I'd encourage you to look for a MS support group in your area. If you need to invite a friend to go with you and drive you there. You will hopefully find some people there that you connect with.

Slow down....chose ONE chore that you need help with....and ask for help with that. Chose one symptom that is driving you batty and ask the doc to help with that symptom....take it one day at a time. one hour at a time.

One thing that shocked the pants off of me was to learn I wasn't in control of anything. WOW....I really thought if I do this and this than I can do that....MS will knock you for a loop everytime you think this way!

Take care, and do reach out to us. We are here.

Peace.