Thanks again guys :grouphug:

The med case IS working out well! I think the very large print helps.

I went to the knee doc- he took Xrays that looked good, but wants to see cartilage, etc. I have to have dual knee MRIs. I'm waiting for insurance approval. On the bright side, we've met our out of pocket max (which of course doesn't include meds or copays). He won't decide what to do with me until the MRIs come back.

Of course I got lost on the way and was late.

I'm not holding up very well. I'm going to hit the S.O.S. :(

**** it! Couldn't find it. I'll deal

what do you mean by this sweetie?
(((HUGS)))
bizi

Were you looking for this Ohkay...http://neurotalk.psychcentral.com/forum29.html :grouphug:

link to SOS
 

Dear Kay,

Here is a link to the SOS:

http://neurotalk.psychcentral.com/forum29.html

M.

Thanks guys, that was exactly what I was looking for.

I feel like I'm having a quiet little breakdown. I really don't need advice- I just have to vent....

My life is an endless string of doctors appointments. Or I'm sleeping. Or I'm pushing my body to the limits by doing things I shouldn't be doing (laundry, food shopping, running the heavy vacuum etc.).
With all the doc appts. and procedures this week, I'm reminded of what a mess I am and how little control I have over my body. I'm 30...30!?!

I can't walk like a normal person, pee like a normal person, crap like a normal person, swallow like a normal person, lift light things like a normal person, be awake like a normal person...

I spasm, I have a tremor, and I'm in constant pain! For Christ's sake, I can't even feel the left side of my vagina!
I'm still smart, but can't access anything without time, my memory is gonzo, and can't express myself verbally without coming across as a blathering idiot!
Children are no longer an option because I'm on s many meds the baby would be a mutant. Can't go off any of the MH meds because I'd probably kill myself, and couldn't take care of a child anyways.

I just can't believe how much MS has taken from me in such a short period of time- I worked SO hard, I was so good at what I did, and when my RN was finally within my grasp I was forced to stop. Pushed out of a job because I disclosed my condition- and the slippery ****ers banded together to slide right out of the EEO complaint!
We exhausted our savings, lost our condo, and couldn't pay our credit card bills because I couldn't work and had to wait over a year for disability! Money problems are a constant concern. Our credit is ****, and I wonder if we'll make it every month, and if we'll ever get back on track. We have $25 in savings.
Doctors tell me I will never work again because of my physcial, MH, and cognitive issues. I've been unable to find a friggen volunteer position!

I feel like I've been wasted. I can't use any of the gifts that God gave me anymore. My friend wants me to redirect my energy by taking pride in my new role as a house wife. My husband wants me to do a load of laundry every week. Wow, that all sounds like fun.
I sit here waiting to see what MS will take from me next, and when. It's just a matter of time. I don't want to hear about cures, things getting better, or not progressing. I have progressive MS. There's no turning back time- the damage is done-and all the new tx and meds are for relapsing remitting MS patients.

UGH. It just never ends!

I am safe. I'm distracting myself. I did the bathroom and the floors yesterday.
I'm hanging on. It's just every little thing. The pile of **** starts to wobble with every little thing.

Thank you for listening.

Dear Kay,
I understand what you are saying.
Thanks for posting that you are safe.
How long has it been since you've been on disability?

Insist that those mdocs get on the phone with each other and alleviate your pain issues. :(

That's stupid of those two assigning roles for you. You are going to find your own way -- even if your own way is about juggling doc appointments and treatment plans for the time being.

Kay, I agree that this one is especially hard.

Lots of hugs.
Mari

it sounds like $h!t :( i'm so sorry. your life has really been ripped out right from under your feet.

i appreciate your friend wanting you to redirect energy, but i guess, i was thinking of this on the bus home tonight (i was numb) that i was grateful for my life even if it never got any better. because it might mean something to someone else. which would make it meaningful - even if not in the way i would have liked it to be or even more strongly, in the way that that i felt it was meant to be.

i really feel i have not/cannot/will not fulfill my destiny or something like that and i get something similar from you. difference is only that in my case i feel guilty/responsible, while in your case i can't see feeling anything but robbed.

disease didn't take anything from me Kay. i did. i didn't have the guts or the whatever to just break out of the mold (or mould!!!) and do what i believed in, what i felt i was born for. anyway whatever's left, for whatever it's worth.... i hope it's worth something to somebody, even if i haven't lived up to my "potential" or my "calling" and regardless of fault/cause.

i don't know if i could take "pride" in being a housewife while feeling like a cut-off nurse ... i respect nursing a great deal. and i respect you as a Nurse, even if you aren't able to practice, or didn't quite finish the paperwork. it is your essence. i guess, i wonder if you can express it in even tiny ways... whatever ways you have left........ and housewifeness can be part of it, but need not be all of it. and it should not be a redefinition.

you are still a nurse. even though you do not have the means to practice.

that is what you ARE Kay. That is your essence. MS can take away your opportunities, your money, your longevity, your comfort, and eventually your life - but not your essence.

now i feel like i have got on some sort of a soap box and i hope i have not been offensive or invasive or some other objectionable thing.

(((hugs)))

~ waves ~

thank you for sharing kay.
feel free to share any time...
we are here...we are listening to you.
(((((HUGS)))))
bizi

Sending you some hugs.

And I want to be there for you also.

Donna:grouphug: