>Hi:
>
>I, too take comfort in knowing that there are others that can relate to what
>we're going through. It also feels good to help those who are "recent" and
>frightened by what's happening. Linda, I appreciate your quick response to
>my questions about the legs and pain. I am going through a bit of a crisis
>right now because I may have to learn to live with what I have. It has been
>five months for me. What part of your spinal cord was affected? Since
>you've had the residual for so many years, can you tell me what your
>improvements from the beginning were and at what point you stopped having
>any (improvements). I know I'm asking a lot of questions, but the
>neurologists have no idea.
>
>My insurance only pays 60 consecutive days annually for physical therapy. I
>was fortunate enough to be treated gratis at the first place because I had a
>rare condition. So I was able to get almost five months of physical
>therapy. Most HMO's offer 60 consecutive days per year. The private pay
>insurance carriers usually offer more. Some HMO's will only pay 60
>consecutive days per diagnosis for lifetime. As far as disability is
>concerned, the hospital I work in does not offer short term disability. I
>became eligible for long term disability at the end of three months at 50%
>of my pay. I am considered totally disabled from the job that I was hired
>to do. However, state disability will not pay unless you are totally
>disabled from any type of work for at least one year. Maybe it's different
>in every state (I'm from Pennsylvania). My LTD will supplement me if I
>should return less than full time which I was working before I was stricken.
>Anyone else receiving disability benefits?
>
>Karen
>
Hi Karen!
I'm being daring and taking another chance at sending a message thru AOL
(it's a new version for Macs that apparently doesn't like me!!! ) I don't
know what happened last night, but both messages I send were "cut off" at
some point! They don't make much sense! But then, I probably don't at times
either....so I can just blame it on AOL this time!!!! ;-)
I am *very* glad to hear from others.....new subscribers and old....that they
like hearing from other TM sufferers and each little bit of info may give us
that ray of hope that we must hang on to! Yes, I have had it for 16 years,
but I will never give up hope!
One thing that *I* feel is so very important is to never lose your sense of
humor! If I hadn't held onto that...I don't know what I'd be like! My
husband has always told me that he doesn't know "how I do it." But then,
he's never heard the laughter stop. Oh yes, he's heard and felt the tears
many times!! And I thank God that he has always been there for me!
Karen, please don't apologize for asking questions! How else are we doing to
learn and benefit from this? I actually cannot remember right now the exact
spot my spine was affected. When I go to my neurologist on the 9th, I will
have him refresh my memory! It is almost at waist level...just a bit above.
That's what....maybe L-3 or so? I can actually *feel* the sore area when I
have an exacerbation.
I can hear your fear and apprehension, Karen....thinking that you may have to
live the way you are. It's hard to accept. You go thru all the
*whys*....but no one knows. And the neurologists cannot tell you how far you
will progress....everyone is just so very different. My neurologist gave me
an 18 month limit. Others have said they have improved beyond that point.
That's wonderful! I hope all can!!
At the beginning, I was completely paralyzed. (I was also one that did not
know *what* was wrong! It wasn't for 6 months that I found my current
neurologist in Boston....and a TM specialist.....and he diagnosed me with TM
and explained why I got it. Before that, I went thru questionable diagnoses
of MS, Polio, Guillian-Barre......) I learned to walk again....from
wheelchair to walker to cane and then with nothing. I had extreme
pain.....tried a variety of medications......none of which helped much. I
returned to work eventually (worked in hospital as Asst. Patient Rep)....even
working with two TENS units on my legs. But, my doctors soon agreed that I
could not continue, and I then went on Permanent Disability in 1983.
I now lead a *fairly* normal life.....at least for me! I can
walk.....apparently looking like nothing is wrong! However, I have pain,
numbness, tightness in my legs from the knees down to the very sore toes too!
Walking or standing causes severe pain in my back. So, I rest quite a
bit.....sit when I can. No, the pain doesn't go away....but it becomes
bearable......*my norm.*
I will *not* let this pain control my life! If there is something that is
very important to attend, I go. It's difficult....and I may *pay for it* for
several days after! But it is my life! I have two daughters, 23 and
26....and they have grown up with me having this. But I would not let it
stop me from attending their graduations, important events, shop with them
for their prom dress! OK...so for days after, I rested and put up with more
pain than usual. But it was well worth it!
I did return to work part-time in 1988-89 for 6 months, but I could not
continue. It was a job I loved and was very difficult for me to leave. But
I must think of my family and my own health.
I apologize for going on and on! Guess you guys are just gonna' have to
*smack* me to shuddup!!!!<g> Karen, I hope I was of a little help to you.
Please feel free to ask any questions anytime. Or write me at
linda922(AT)aol.com. Personally, I feel all can benefit from the messages, so
I'd prefer to read mail on the list.
Linda