________________________________
From: Patricia Cooley <
[email protected]>
To: Catherine <
[email protected]>; Transverse Mylitis Group <
[email protected]>
Sent: Monday, May 4, 2009 2:46:21 PM
Subject: RE: [TMIC] RE: wow, you work too hard Trudy
CATHERINE – I TOO DON’T WAKE UP AT NIGHT. I HAVE NEVER BEEN
SUCH A SOUND SLEEPER THAN I AM NOW, AND I AM NOT TAKING ANYTHING TO KNOCK ME
OUT. I THINK I AM JUST SO WORN OUT WHEN I GO TO BED. I HAVE BEEN USING
OVERNIGHT PADS ALONG WITH DEPENDS UNDERWEAR, WHICH SEEM TO DO THE TRICK ALL
NIGHT ALL. SOME MORNINGS I FIND I WET MORE THAN OTHERS AND SOME MORNINGS I AM
ALMOST DRY. I GUESS IT DEPENDS ON MY BEING ABLE TO EMPTY MY BLADDER BETTER SOME
NIGHTS BEFORE I GO TO BED. I AM JUST GLAD I HAVE BEEN ABLE TO NOT HAVE ANY
ACCIDENTS AND NEED TO
CHANGE BEDDING.
PATTI - WISCONSIN
From:Catherine
[mailto:
[email protected]]
Sent: Monday, May 04, 2009 12:42 PM
To: Transverse Mylitis Group
Subject: Fw: [TMIC] RE: wow, you work too hard Trudy
oops
sorry group forgot you, my other problem brain fog!!
----- Forwarded Message ----
From: Catherine <
[email protected]>
To: Janice <
[email protected]>
Sent: Monday, May 4, 2009 1:39:34 PM
Subject: Re: [TMIC] RE: wow, you work too hard Trudy
Janice and
each of you,
I too am so grateful to have you all to share with. I woke up last night
in a puddle .. I am afraid that it is time for depends for me. Either I
sleep or get up all night long to go potty. Laughs, never was a better
wetter but now I am!!
Future depends
user,
Catherine
________________________________
From:Janice <
[email protected]>
To: L T CHERPESKI <
[email protected]>; Trudy OGILVIE
<
[email protected]>;
[email protected];
[email protected]Sent: Sunday, May 3, 2009 11:51:40 PM
Subject: Re: [TMIC] RE: wow, you work too hard Trudy
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.
________________________________
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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