In response to:
Jeanne,
When I went on SS Disability, I got my full benefits and then the next
year Medicare
kicked in...The month before I was hit wih tm...,my disability was for
another health
problem.so when I reached 65, nothing changed. I would assume that's
In response to:
I spent nine weeks in the hospital from Jan. to April in 1981. I haven't heard
anyone
talking about a swollen belly. I was 235 with 42 waist when I got this. When
in
the hospital I swelled so when discharged I was 205 with 60 inch waist. It
stayed like that
for many weeks,
In response to:
Oh my gosh! same here I feel like the Stay Puff Marshmellow Gal! I gained
90 lbs when I got sick 4 years ago and have yet to lose any of it,
Kim, it's not like we can go out and run around the block or through the woods,
right??? Heck, we can't even tell if we're holding
In response to:
To this day I have a poofy tummy and have never once contributed it to the
disease. I thought I had just gained weight over the years. Isn't that
strange?
Jude
Well, I know that it is very normal that as we grow older and as soon as I
started 'the change' it was harder and
In response to:
I have taken Tramadol since day one, but not along with the other drugs you
mention. The Tramadol has never, to my notice, done anything for me, but I
have not seen a neuro' for years. Maybe I ought to make an appointment one day
to see what new drugs might do to help my
In response to:
like acid on my skin
These words are excite as it really feels.
Todd in CC, TX
Todd, those were the exact words I've used, also! The 'band' around my
chest is like a piece of metal being squeezed tighter and tighter. I do have
to say the new
In response to:
I have memory loss along with cognitive dysfunction. It is better since
I am currently able to be on much lower doses of my meds. (I am not anti-meds
and will go back up when I must)
The suggestion on group about doing crossword puzzles, etc. is excellent.
In response to:
I saw a friend that had a light brake in his ankle wearing a adjustable
ankle stabilizer that he got from Wal-Mart for about $12.
I got one, it can be warn on the left or right ankle.
It has really helped with my drop foot around the house.
I want to
Hi, Randy,
I've been taking Lyrica and Lexapro for quite awhile but just changed over to
Cymbalta from the Lexapro and added Tramadol for pain and I can't tell you how
much I've improved! I experimented with the timing on taking the Tramadol and
only take two a day. You can take 1-2 up to 4
In response to:
Are you taking Tramadol and Cymbalta?
Jude
I take both in the AM along with the Lyrica 75mg. plus one Tramadol at noon.
Then at night before I go to bed I take another Lyrica, Klonazepam 1mg (for
Restless Leg Syndrome), Toprol for my heart and a baby aspirin. I can take
In response to:
Jeanne, when I was the hospital I had a band around my waist like a steel band.
After some time out of the hospital and for
many years it has been a band of pain. No medication relieved it. It was
especially bad when i laid on my back.
Ken in N.M.
It is pretty horrible,
In response to:
Hi, Jeanne,
I am currently on 300 mg a day of Lyrica. I find that I am very stiff
with pain late night and early morning, especially when turning in bed. I
think I may ask my neur. about Tramadol to add and see if that helps. Thanks
for the information.
In response to:
Hi Jeanne,
Awesome that you are having such relief from all the fun pain. I tried Lyrica
- it did nothing for me - again, we are all different, but I am going to ask my
doctor about the Tramadol. Yep, it would be worth adding yet another drug to
my current cocktail if it
Jan, your words are absolutely perfect! It needs to be printed and framed!
Jack and I live our lives exactly like that and it has made something
not-so-good turn into quite an adventure! Thank you for sharing!
Jeanne
How about a good old Dutch ice cold beer? I'm not much of a drinker so one
would put me right under the table!!
Jeanne
How perfectly put, Kim.. Thanks for sharing with us. Jeanne
Happy Birthday to the all of the December chickadees! Jeanne
12-2 Meghan ([EMAIL PROTECTED])
12/2/ Ashlee Black ([EMAIL PROTECTED])
12-3 Wim from Holland ([EMAIL PROTECTED])
12- 4 Jan Burgess ([EMAIL PROTECTED])
12-8 Lori Malloy ([EMAIL PROTECTED])
12-10 Shirley from UK ([EMAIL
In response to:
CATTYWOMPUSS IS A GOOD ONE! HOPE YOU FEEL BETTER
HUN!!
TIAD PAM!!!
I am feeling better! For the first time since the onset of TM, I am feeling
less pain than I ever have!
In response to our Jude's note:
I'll have to speak to my doctor about Lyrica...I tried it once before and
didn't have very good luck with it. I can't recall exactly but I think that it
made me hurt more than usual.
I also will ask her about cattywhompus. Is this a disease that medicine can
In response to:
Whoops! I was cattywhompus: That Urban Dictionary said off kilter ODD.
I said off kilter, off
Sorry.
- Original Message -
From: [EMAIL PROTECTED]
To: [EMAIL PROTECTED] ; jrushton ; tmic-list
Sent: Sunday, November 30, 2008 1:26 PM
Subject: Re
In response to:
Jeanne, How wonderful not only that thankfully you have found something that
helps you, but that you may be helping others whose doctors haven't connected
with this medicine. I just wanted to ask if the pain you were experiencing is
the same as my Jim has had for ages. He says
I've had it since the onset, dear one. The only thing that has really helped
it has been the Lyrica. I know we've talked about Lyrica off and on several
times but about 30 mins. after taking it I begin to feel warmth from my 'band'
on down. It doesn't last a long time but it has helped for
In response to:
Grace,
Please know that ALL of us are sending vibes to help you make it over
this hump. With all of us pushing, you know that this too shall pass!
You're in our prayers.
Hugs,
janh in OK
So beautifully
In response to this funny note!!:
Sandy in chilly Wisconsin where thankfully all the deer are now in the freezer.
You are so funny! Thank you for the giggle!! Jeanne
Oh, Grace, I am so sorry you have to go thru this. Hopefully the treatments
will bring some healing and relief for you. Know that you are in our prayers
and we are all here for you just waiting to hear from you with promising
updates. Jeanne
, 11/23/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote:
From: [EMAIL PROTECTED] [EMAIL PROTECTED]
Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431
To: jrushton [EMAIL PROTECTED], [EMAIL PROTECTED], TMIC
tmic-list@eskimo.com
Date: Sunday, November 23, 2008, 4:30 PM
i have a question
Jude, that was what I was told from three neurologists. j
Barbara, the first three MRI's that were done were when I was in ER and they
didn't see anything. It wasn't until I got into Harborview in Seattle that the
neuro found the lesion. None on the brain at that time and still no new ones on
the spinal cord nor on the brain. Thank God for that..j
You, dear one, are so very special to so many of us and what comes thru
on-line is just a small part of what you must give to your friends and family
that can hug you and touch you. There is nothing at all wrong with that little
'pity-pottie-party'...in fact I think it is very important that
In response to:
Gilly,
Very well put. I know that I now live a 'new normal'. I have had to let go of
a lot of things too.
Heather in Calgary
Heather and Gilly,
I don't know about all of our 'new normal' family (and that is such a great way
to put it!) but I do know that from the very
Gilly, you sure have that right!! As much as I loved my job, there just is no
way I could do it so that door had to be closed and the door that seems to have
been opened was the ability to truly appreciate a life of total freedom and
peace out here and the best of all was that Jack and I have
In response to:
i have a question, has anyone else been told that they don't have lesions
on their spine? my neuro says mine is just swelling from c6-t3 and t9-t10., so
what does that mean? will the swelling go down? will i be able to recover? i am
a single mother of two and i
In response to:
Your description of your family carrying you through the sand made me laugh so
hard I almost wet my pants, which isn’t hard to do these days. This bring up a
question I would like to ask you. I know as a fellow TMer you won’t be
offended. As a lot of us. I am incontinent.
In response to:
Jeanne:
I see why he not only loves you but likes you too. Just by communicating
via a few e-mail these past weeks, I can see you love life and have a
wonderful sense of humor. Too bad we all live so far apart and too bad it
took TM for us to meet.
Have a great and Happy
Sandy and Terry, I'm finally getting back with you on this!!! Am I slow, or
what?? I just had my first visit for the TM with a new provider and was I ever
happy with her! Instead of asking me what I wanted to do, she jumped right in
there with both feet and gave me all sorts of
Hi, friend! I tried that walk aide out and the concept is really good but it
was just too expensive ($4,000) and our ins. wouldn't cover it. Trying it out I
could see how it did work and that was from setting the timing of the elec.
jolt into the muscle that makes you able to take a real step.
So well put, Lori! Thank you for sharing. It is so hard for those of us
who were so independent prior to the TM to have to go straight into full
dependence and even after great strides into improvement we still need help.
It has made me very humble and thankful and in many ways (I hope) a
Date: 11/20/2008 7:06:15 AM
To: jrushton
Subject: RE: [TMIC] Anybody else been there?
Jeanne...both you and Tobe have made me feel less alone...to me that is what
this list is all about...people who truly understand!
Thanks
Rob
From: jrushton [mailto:[EMAIL PROTECTED]
Sent: Wednesday
So perfectly put, Sandy. What a wonderful caregiver you must be! I live with
one, also, and he spoils me rotten! I am so blessed...
Jeanne in Dayton, WA
Amanda, you couldn't have come to a better group. We go clear across the chart
in where we are in our post TM onset so you will have a lot of support. I
don't think anyone really knows where each person will be with their TM. Some
do improve right away, some improve partially from the onset,
Hi, Sandy! Good to see your name here, too! What fun that Facebook is!!
I think sometimes the caregivers/spouses might forget that TM'ers certainly
didn't choose to have this situation and whoever said that we look fine on the
outside but oh, the inside is another story, said it perfectly.
Rob, I didn't get your message but reading Tobe's I just needed to tell you
that could not have said it any better! Jack is always saying he would not be
able to live with the TM like I do, as we all do, but everyone does what he or
she has to. We try to keep the best attitudes we possibly
...and hugs to you, too, Gilly!! As a matter of fact, hugs to ALL of you
Jeanne in Dayton
Hello, dear Jude! I just read your note to Terry about walking with no
sensation to the feet? Such exciting and wonderful news!!
That is how I walk and it is true about having to watch your feet. At home I
don't so much since it's more comfortable but I still fall into the walls
often. I
I don't have one, Patti, and ran into the same problem as you as far as having
to have someone with me. Wish I could help!! j
Yes, I did consider the left foot accelerator, Heather, but then had hand
controls installed in my car instead. I then found I just didn't use them. I
took my driver's test not using them but felt safer knowing they were there if
I needed them. The person that gave me my driver's test asked
My insurance covered the hand control set up or I wouldn't have been able to
afford it, either. I didn't realize the left foot accelerator was more
affordable and easy to put in and take out! The hand control is a bit
bothersome for regular drivers who are taller and longer legged than I am
Did you get this, Ann??
Jeanne in Dayton
Wonderful news!! Good going, Terry
I remember how much I sweat (no perspiring...just plain old SWEAT!!) trying to
just stand up but with plain old stubbornness and tenacity, I made it! It was
the hardest thing I've ever done in my entire life but also the most rewarding
(other than
Patti, you can never, ever give up because we just won't let you! The times
when we get depressed and just so tired of working so hard will be there but
that is the time to take a nap, get back up and start all over again! We are
here for you, body and soul and will encourage you every inch
I also got you, Ann..j
We will keep all of you close to the fire in our prayers..
Jeanne in Dayton, WA where we had the very same thing right up to our place two
years ago. Very, very scary.
Patti, it can be whatever or however you want. I just write a first name,
nothing else, and sometimes my little piece of paper will be completely full of
names and sometimes it is only one. God knows what is in your heart when you
put that special name on the paper. It is just another way to
Patti, I just got thru writing 36 names on a tiny little piece of paper, folded
it up as small as I could and put it in the prayer pot. I never take them
out...just add to the pot. I always put your name in there, dear Jude.. There
is no wrong way with prayer when it is coming from the
Jude, dear one,
All you need for a prayer pot is a nice little pot or basket with a lid that
you can write a name or names on a little piece of paper, fold it up and put it
in. I've put my kid's names in there almost every time, other family members
that might be going thru hard times or
Oh, Jan... how can that be offensive. Thank you for sharing and I will begin
using it. Sometimes the pain just seems so much worse than other times but it
is always there. God is good to have sent us friends like you all.. j
I hadn't either, Pam, and I just started it because there were so many
people, patients, family and friends that needed prayer. I would drive my
40 miles to work each morning and say my prayers as I drove. While I was at
work I would see so many patients that needed a prayer, I was afraid I
Perfectly put, Linda...jeanne in dayton
I could not agree with Trudy more, Gunny! If not for you and others like you,
we would not be sitting here in the peace of our homes in warmth and with full
tummies. Thank you, Gunny..
Jeanne in Dayton
Oh, Randy...you are so in my prayers and in my heart as you go thru all of
this..
Jeanne in Dayton
Randy, I totally agree that stress seems to aggravate the symptoms as does any
illness like colds and flu plus change in the weather. But the stress seems to
really zap all of the good we work so hard for!
The varicella zoster/chicken pox/shingles virus is probably the strongest
theory I've
My gosh, Rob..this is wonderful! You should submit it to different
magazines!!! You have put into words what so many of us cannot so 'thank you'!!
Jeanne in Dayton
I, like so many of you, had a full life of working every day, driving 40 miles
each way, seeing Jack for a couple hours after I got home, eating different
times, going to bed only to get up and start all over again. We, thankfully,
had Fridays off so we could get our 'work' done here at home
If that was the worst we ever did...oh, mynot to worry, Cheryl!!!
Jeanne in Dayton
Oh, Kevin,
I'm so glad I got your e-mail with Barbara's attachment. It, too, made my
heart cry for that family and I think each and every one of us can understand
the pain and frustration that poor man went through, can't we? We get to the
point where we just cry inside it hurts so bad and
So true, Janet.. I don't know if it is the weather change or what but I've had
the last few weeks where I can hardly move from the increased pain. It
literally just drains you and makes you so tired, so very tired...j
Gunny, I am sending e-mails to all that I know about using IDC for the
donation on I-Give and to do as much of their shopping as possible but I
want to make sure it goes to the right 'IDC'. Is there just the one?
I hope all of you know about this since it is a really great site and you
can shop
Oh, Rob.. I am so happy for you! I will be looking for ways to bring the
TM'ers together in our area since there hasn't been anyone as yet that I
know of. I think there might be someone in the Tri Cities, 80 miles from
here but I'm not sure?? I know of one young man in Walla Walla, about 40
Have a heartfelt 'Happy Birthday' all of you chickies and dudes!!!
Jeanne in Dayton
Save all photos Want to save all these photos at once? Learn how
Online pictures are available for 30 days
Mary Anne, I get my products from a site called My Health and Safety and even
tho it shows for adults, I just checked it and it has products for
'Youth/Small,
Facebook is a good site, Keven! Good idea...thanks! Jeanne
Hi, Gilly,
I think I've been part of the TMIC and when I first came on, there was a
spirited discussion of some kind then but because there was so much caring
between those involved, I watched caring hearts work it out so it is like a
family. Things come up?? We work it out!!! j
I have a simple suggestion after all of the discussion on religion and
politics...maybe too simple? What if we were to add 'Rel' or 'Poll' to the
Subject line whenever we want to add either and that way it will give the
reader a chance to delete it without having to read it first?? I'm fine
Well put, Trudy...thanks! Jeanne
Always...
Jenna is right, Randy!!! Go and keep us posted, both of you? In the prayer
pot you go, Randy! Jeanne
Thank you, Wim, for taking the time to send your thoughts. We often think we
are the only ones affected by everything but it goes across the world and you
said it very well. Our health care is greatly affected as we all know. We
can't be without it and some of us have to pay so much to keep
Jenna, as far as I'm concerned, how else are we going to know about some that
are unable to let us know themselves? I'm thankful we have people like you
that are willing to help each other. Isn't that what the TMIC site is all
about?? Helping each other?? I thank you for being so kind as to
Does she have a laptop, Jenna, so we could e-mail her??
Jeanne in Dayton
Whew!!! At least we've got a little blood flowing through the TMIC site,
good or bad!! I thought it had rolled up the rug and closed the door or had
taken my name out of the pot!!
Jeanne in Dayton
---Original Message---
From: Lawrence King
Date: 10/24/2008 10:16:15 AM
To:
Way to go, Kevin! I was getting ready to ask to have my name removed and now I
don't think I will! As far as I'm concerned, if I don't want to read what is
on this site, it is so easy to just delete it and not worth the arguing. Life
is just too dang short for such foolishness!
Jeanne in
I gotcha! Jeanne in Dayton
Trudy, it would be really interesting to see what Dr. Kerr and his staff
know about this. Jeanne in Dayton
a 'closed
door' talk with my provider when he got back to his clinic.
WHEW!!! Was that a bit of venting, or what??? I even surprised myself!!
Jeanne in Dayton
---Original Message---
From: Trudy OGILVIE
Date: 10/16/2008 9:28:07 PM
To: jrushton; [EMAIL PROTECTED]; tmic
Subject: RE
Thank you, Jenna! Thank God for this wonderful group and their prayers!
Jeanne in Dayton
I know, Linda..in fact we all do. Trying to find a provider that can even
take the time to sit down and talk to you, let alone figure out all of these
symptoms and findings is almost impossible! They can treat our symptoms
with meds but answering all of our questions is another things. I do
HA!!! Diane, you are a breath of fresh air to all of us!!!
Jeanne in Dayton who has this problem with freezing, sweating, and shivering
sometimes all at the same time
Oh, my yes, Wim. We have lost most of our hard earned retirement and now
just have to have faith that things will make a turn for the good.
Jeanne in Dayton, WA
---Original Message---
From: wim from holland
Date: 10/5/2008 5:51:59 PM
To: TMIC
Subject: [TMIC] OT: house problems
Just
Hi, Jude! So wonderful to be hearing from you and that you are doing better.
God bless you, dear one!
I was told by the first neuro I saw at the onset that one of the 'theories' for
TM was the varicella-zoster (chicken pox virus) which is also the 'causative
virus of herpes zoster which
Gosh, aren't we all so lucky! I've also won but they want my Social Security
number, also! How can you go wrong??!!
Jeanne in Dayton, WA
What a wonderful thing for you to do in sharing this with us...Thank you, Pam!!
Have a Happy Birthday all of you birthday babbies, no matter what your age
is!!
Jeanne in Dayton, WA
Cooler weather, leaves changing, football games, apple crisp...and lots of
birthdays are hallmarks of October! Best wishes and happy birthday to the
October kids!
Please send any
Thank you, Larry, for such an uplifting story! You would be a wonderful person
to be around more often! Your family is blessed. I'm just a TM 'new-be' since
5/2005 and I agree that it has put so many wonderful things into my life. It
has literally forced Jack and I to 'stop and smell the
Beautifully said, Trudy. What a nice person you are..
Jeanne in Dayton
Bless your heart, Bob. Linda is right about your place being full. Know that
you have lots of people that will be thinking and praying for you and your
family. Jeanne in Dayton
From: L T CHERPESKI
Sent: Friday, September 19, 2008 9:40 PM
To: bob ; tmic
Subject: Re: [TMIC] jude
Gee Bob
Oh, my This is one of the most beautiful things I've ever seen and
heard. Thank you for sharing!
Jeanne in Dayton
Carol, did you and Jim get any response on your e-mail? So far, I haven't
seen any.
I haven't heard anyone at all say they've been with this. Interesting!!
What was his reasoning for changing the diagnosis?
Gosh, everyone has a different story to go with their doctors. I truly
think it is
Welcome, Assunta! You will find a wonderful lifeline of new 'friends' here
that , between us all, are living the with the same symptoms you are. You
will find all sorts of caring people with unending support of all kinds.
Already, from reading your symptoms and what you went through, it is like
You are such a nice person, Gracie... j
---Original Message---
From: Grace M.
Date: 8/14/2008 10:29:44 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Hi I'm New Here
Hello again Assunta,
I've sent you three files including the latest Devic's research paper out
of the Mayo. Two of
I had never heard of Devic's/NMO before getting started on the TMIC site.
What a wonderful group of friends we have, right? Always right there to
help us all..
Love to you and your family, Gracie...j
---Original Message---
From: Grace M.
Date: 8/14/2008 11:34:53 AM
To: [EMAIL
301 - 400 of 563 matches
Mail list logo
