This is really encouraging for me - hearing from those that have had TM longer
than I have and still talking about improvments.
If it wasn't for my bladder going "nuts" during the nite, I would be doing
really well. I just don't always wake up during the nite
and it is apparent that I have been peeing all nite! Ain't life great!
----- Original Message -----
From: L T CHERPESKI
To: Trudy OGILVIE ; [email protected] ; [email protected] ; Janice
Sent: Friday, May 01, 2009 10:33 PM
Subject: Re: [TMIC] RE: wow, you work too hard Trudy
Janice, you're so funny. The more questions, the better. Then we all
learn something. About the cathing,
I have had TM for 7 years now and have had to cath from the beginning. I
couldn't "feel" that I had to go so I needed to put myself on a "pee schedule"
Then my doctor sent me to a urologist who worked with people with neurological
issues. She was great - after some testing (just a tad bit embarrassing) she
diagnosed me with neurogenic bladder. In my case, I could not empty my bladder
completely. However, I had a very strange thing happen about 2 months ago. I
had just finished another round of Rituxan infusions and one day realized that
I hadn't cathed! Miracle of all miracles. I still cath before bed just to make
sure I don't need to get up in the night. I really have stopped thinking there
is a "time limit" on this TM stuff. I've seen small improvements in the last
few years that really surprised me. Like washing my hair in the shower and
being able to close my eyes without one hand on the glass door. Sometimes I
still need to hang on or I will lose my balance, but I could NEVER close my
eyes before. Some of these things may seem small, but when you could not do it
for years, it's actually huge. I hope you and all the rest of us will continue
to improve for many years to come.
Oh, just one more thing - Janice, nothing is too embarrassing to talk about
here! We've either been there ourselves or know someone who has. So go for it!
hugs,
Linda (Eagle, ID)
----- Original Message -----
From: Janice
To: Trudy OGILVIE ; [email protected] ; [email protected]
Sent: Friday, May 01, 2009 6:49 PM
Subject: Re: [TMIC] RE: wow, you work too hard Trudy
This is Janice,
As usual, I have another question. How many of you have to cath? Do
you know if that is from having a
catheter in too long when in the hospital, or is it a result of
paralyzation onset taking a long time to come back? Do you still feel
improvement - cathing less, fewer wet pants/pads, more control? Do you wake
up in the nite to an
already wet bed - you don't yet feel when you are peeing until it is too
late? I have not gotten control yet
after almost 2 1/2 years. I am improving, but not there yet. Wonder if
it will ever heal. Just wondered if those
of you that have had TM longer have seen any improvement after the "2-year
mark". Thanks for any responses I
get. I realize this is personal. Janice
----- Original Message -----
From: Trudy OGILVIE
To: [email protected] ; [email protected]
Sent: Friday, May 01, 2009 3:27 PM
Subject: [TMIC] RE: wow, you work too hard Trudy
Hi Barbara,
Congrats on having 3 good nights of sleep! I'll bet you feel like a whole
new person.. I really don't work so hard, I do pace myself and if it doesn't
get done it doesn't get done. I do have someone come in every other week to
help me so I'm fortunate for that. My washing machine broke and I am now trying
to catch up on that disaster. My husband (Mac) is fantastic to me. It's odd in
that seven yrs. ago when this hit we were having some difficulties.... that all
changed when TM came along. Crazy I know..... so is this damn TM .. only
those of you on this list can understand words like "banding", numbness,
fire and ice..... change your shoes ..... watch out... change your
clothes ..... watch out...... But I am back and committed to doing my
exercises. I do feel much better and a real sense of accomplishment. Again, so
glad you're sleeping, it makes a huge difference.
Take care - Blessings!
Trudy
Springfield, Va (the sun just peeked out - it's supposed to go away for
the weekend.
Worrying does not empty tomorrow of its troubles;
It empties today of its strengths.
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To: [email protected]; [email protected]
Subject: wow, you work too hard Trudy
Date: Thu, 30 Apr 2009 17:00:22 -0400
From: [email protected]
Hi Trudy,
You work too hard, I could not clean all day, whether I wanted to or not.
If not for a automatic washer/dryer, the wash would not get done. And, if it
goes for floors, I can do a small amount but not a lot. It kills my back, and
I'm in bed for days. So, it's someone else's job. I do clean the spots on the
kitchen floor iwth paper towels though from time to time, since hubby or
daughter in-law aren't really responsive on the job, lol. It doesn't seem to
be as important to them that it is and looks clean as it is to me.
My speed is dusting and cleaning kitchen/bathrooms and laundry. I can do
most things that are off the floor and I cannot do too much in a day and still
manage to cook dinner. I don't cook dinner everyday, but try to do it most
days. Pete (hubby) usually handles breakfast most days and it's a nice trade
off as he loves breakfast. That's one of the good parts of his retirement. He
also makes my coffee in the morning and then again at night. And, he is sure a
handy guy to have around I know that I don't think that I could have gotten
through this whole TM thing without him, he's been so good at accepting the
changes that it has made in our lives. I say accepting, and I am not sure it
is the right word, as it is a hard thing to say. We do have to accept it,
don't have to like it as none of us do, but we just roll with it. It just is
what it is. Can't change it, and cannot deny it anymore, although I tried that
for about 18 months. Now, it's been almost 10 years.
I use 40 mg Baclofen at night for spasms, and generally it works pretty
well, although there are those nights when it doesn't seem to work. Maybe it
is and if I hadn't taken it, they would be a whole lot worse, but they
definately keep me from sleeping. That is usually on a day that I've done too
much. I've had 2 DVT's in my left leg, and sometimes I think that the problems
and pain in that leg are worse than the complications that TM has caused in my
life. Although, I didn't get the DVT's until I was in the hospital paralyzed
from TM. Darned leg!
But I have slept 3 nights straight and am a happy camper today. Yippee!
I hope you all can take something positive from me and do something positive
for yourself to get on the right track if you've slipped off as well.
Hugs to all, Barbara A
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