RE: [TMIC] my story

[Gerry Surette]

Yes mary I hear you. I know what you are going through. remember though as 
the saying goes. Someone is always worse than you are. Sometimes it gets so 
discouraging that I start to cry for no reason. sometimes i get so fed up 
with the pain, the lack of any comfort. That is when I pray no talk to Him 
and ask him for his bountiful blessings. Somehow it helps. I don't know how 
but it does. I know tonight i will sleep like a baby. My body is going to 
give some respite. only to start over again. I find that having a positive 
attitude is always a good thing. as hard as it is to get. let it snow let it 
snow spring is just around the corner.

From: "mary thompson" <[EMAIL PROTECTED]>
To: "'Gerry Surette'" <[EMAIL PROTECTED]>
Subject: RE: [TMIC] my story
Date: Mon, 25 Feb 2008 16:54:41 -0500

Hi Gerry,
Thanks for writing to the group.  Everyone's story is so important
to us, to compare where we are at individually since the medical
community is not up to speed with our condition.  I have learned
everything I know about TM here.  The docs never commit, they just
mumble around the subject.

I am in a wheelchair; lesion was at C-6 nine years ago.  I am 49.  I
take methadone and 3200mg gabapentin (for pain), 36mg tizanidine
(for spasms), 10mg oxazepam for restless legs beyond the usual
spasms, and I have edema in the legs real bad.  I take other meds,
too, for non-TM-related medical things.

I try to make something of myself daily, but to be honest the pain
gets to me.  It's like slow water torture, drip, drip, drip, drip,
drip all the time.  I can't sleep, it hurts too much to stay in one
position for more than half an hour or so.

I hope you stay with this group even if you just read or go through
the archives.  And don't let the griping get to you.  We can be like
a family at times, you'll get to recognize the names and who is who,
and our attitudes are part of our disease, too, right?  But you can
feel free to just butt in and ask your question that IS related to
TM.  You will get responses.

Take care, Mary T.



> -----Original Message-----
> From: Gerry Surette [mailto:[EMAIL PROTECTED]
> Sent: Monday, February 25, 2008 4:20 PM
> To: tmic-list@eskimo.com
> Subject: [TMIC] my story
>
> HI; My name is gerry; someone asked me for my "story" why i do not
know
> anyway here goes. I am 60 years young. I first contact mt at the
age of 21.
> I paralysized from the lung cage down. including a 2month stay in
icu I
> was
> in the hospital for approximately 5 months. I had to learn to walk
again
> etc. three years later I had another episode this time lasting two
months.
> full recovery until 2001 when the symtoms returned. I now have
constant
> pain
> 24/7  I have no circulation to speak of My brain can not g9ive my
body
> correct temperatures. sometimes I feel cold when I am actually
quite warm
> and sometimes I feel warm when I am actually cold. This event is
certainly
> brought to the forefront when I cuddle up to my poor wife in the
middle to
> the night. and wrap my cold hands around her body. since last
Saturday I
> have slept but 4 hours. I get these muscle spasms which hurt like
hell
> pardon the expression. There is nothing to be done for them . I
take
> quinne
> but it doesn't seem to help. These last from a few minutes to 6
hours as it
> did last noth. soemtimes I get five or six a night. I take
wellbutrin for
> depression,gabapentine for pain and a whole bunch of othere pills
to help
> me
> walk. Yes I am fortunate that I can still walk . Every step is
pain galore.
> I use a cane but have a walker and wheelchair for the very near
future.
> Last
> week I was diganosed with ITP ablood cell disorder whereby my
white
> blood
> cells are killing each other off. Next Monday I will be enteing
the hospital
> for chemo , radiation and a bone marrow transplant. Oh my life is
far from
> dull. Every day brings new challenges, new adventures,. Every
morning I
> pray
> for strenght. Every day I try to accomplish something whether its
laundry
> preparing evening meals or just cleaning up the apartment. we have
a cat
> ;
> Astray I picked up .She feels right at home. She sleeps at the
foot of the
> bed. I love cooking; barbequing; walking; Yes I force myself to
walk  and
> when the weather is bad I walk along the corridor sometimes
climbing up
> and
> down the stairs. but most of all I love my wife. it is scary but
she reads
> my mind. She is my caregiver; my soulmate. I don't know what i
would do
> without her. I thank God almighty for sending here to me.I too
will need
> your prayers for next week. many thanks. gerry