Barbara,
The trip sounds wonderful...how nice it must have been to go and relax and
enjoy things..
The story about Erica and her dad brought me to tears...I guess I can at least
partially understand the turmoil her dad must have been going through..
TM can be such a bastard sometimes...
Be well and take care..
Kevin
________________________________
From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]>
To: tmic-list@eskimo.com
Sent: Monday, November 3, 2008 11:41:59 PM
Subject: [TMIC] it's the smallest world
Hello list,
We have just finished a 16 night Panama Canal Cruise, and I must say, that
it is sure the easiest way for us to travel these days. We had a wonderful
time, and the service that was given to me was just incredible. I felt
like a pampered soul the entire time, and it sure is a wonderful feeling.
Although I don't ask or require anywhere near the amount of help that was
extended to me, it made me feel good to know that if I did need it, I would not
need to worry that I would be able to still have a good time.
We are now spending a few days in Orlando before returning to our home in
No. CA. Today we met a lady named Erica, and when we were talking she
asked if I had an accident since I was using the wheelchair. I have had a
lot of spasms the past few days and not walking very well, even with my
crutches. Anyway, when my husband told her that I hadn't had an accident
but that it was caused by a virus, she immediately asked if I had Transverse
Myelitis. When I said YES, her eyes welled up with tears. It was a
real intense moment. Her father had gotten TM and it was a slowly
progressing onset for him, and he had a very hard time getting a
diagnosis. They thought he had Guillian-Barre (sp?). It took one and
a half years to get the TM diagnosis, and he was in excruciating pain.
Unfortunately, he just couldn't deal with it, the pain made him
crazy. He didn't want to get involved with any support groups
either and wouldn't go onto anti-depressants. He was one of the unlucky
ones who didn't get any improvement. He ended up committing suicide to end
his pain. This was a real bonding moment for the 3 of us.
I can't tell you how much pain this woman and her family had gone through
due to this. She's better now, but she says that her brother is
still really a mess.
I say this only because I want people to know how much TM affects
us and those around us. We know how hard it is to try to be in a positive
mood most of the time. When my pain gets unbearable to deal with in
front of people, it's usually when my spasms are pretty bad, I excuse myself
and
go into another room and spend some time alone until it passes. I don't
want anyone to have to see me like that anymore than necessary, and my
medication usually makes it easier to deal with once it kicks in. It's
generally when I've overdone it or have taken it off schedule (my fault), but
still definitely not any fun.
Erica has made a friendship with another TMer, and his name is Neil
McNeil. I may not have spelled it correctly, but the name sounded familiar
to me. Neil, if you are out there in TMIC land, please send me an email
and let me know.
Hugs to all,
Barbara A from Auburn, CA
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