[TMIC] Unidentified subject!

[kimr1999]

as of Thursday I will have a new email address. Please update your contact list 
to below
 
Thanks
kim 
 
kimharrison...@comcast.net

Re: [TMIC] update on Michael

[kimr1999]

God saw Michael getting tired and a cure was not to be. So He put His arms 
around him and whispered come to me. With tearful eyes we watched , and saw 
him pass away. Although we loved him dearly, we could not make him stay. A 
golden heart stopped beating, hardworking hands at rest. God broke our hearts 
to 
prove to us, He only takes the best.

May the peace which comes from the memories of love shared, comfort you now and 
in the days ahead.


 




From: Jill Hammond 3jmhamm...@clearwire.net
To: Anna  Jim jnawil...@roadrunner.com; Annie annielyman1...@yahoo.com; 
Becky  Steve mcsmi...@adelphia.net; Beth  Greg g...@comcast.net; Bob  
Beverly b.doerfl...@gmail.com; Boyd b...@boydbryant.com; Carole Matteson 
carolematte...@hotmail.com; Char Brower charsreti...@hotmail.com; Cheryl 
Hammond i...@todaydata.com; Cindy Dunn cdunn53...@aol.com; Craig  Candi 
bur...@comcast.net; Craig Fiore cr...@ultra6.eskimo.com; fi...@dhs.gov; 
David and Patty Brooks blueba...@verizon.net; David Gay raega...@yahoo.com; 
Dennis  Pam burpee...@msn.com; Earl Fordham earl.ford...@gmail.com; Elaine 
Boos elaineb...@bellsouth.net; Eric  Eri ericshamm...@hotmail.com; Fred  
Susan graceann1...@charter.net; Gil  Mari cdav...@dc.rr.com; James Fulmer 
jedi...@gmail.com; Jan Hlavaty-LaPosa janet.hlavaty-lap...@dhs.gov; Jim and 
Bobbi jimbobk...@msn.com; Johanna mjber...@verizon.net; Judy  Karl 
romocharlo...@hotmail.com; Keenan kee...@seattlegeek.net; Kendra 
kwa...@comcast.net; Lenny Lisa len.l...@verizon.net; Lisa 
l...@lisalundt.com; Lynn  Jade lynn.mari...@pfpa.mil; Mari 
wordfromwis...@smtel.com; marie swanson swansonbythe...@comcast.net; Mica 
Ward m...@detech.net; Mike  Nancy mmccallis...@soundandsea.com; Nancy 
npurcell1...@yahoo.com; Noah n...@noahconrad.com; Pat Allegretti 
paa...@gmail.com; Pat and Corky pjgren...@hotmail.com; Pat Doebele 
grandmap...@comcast.net; Pat Massey patrick.mas...@dhs.gov; Paula 
paula.lazz...@attachmate.com; PJ pjn...@yahoo.com; Ron 
ron.brook...@att.net; Sally sa...@bsorenson.com; Sarah Bell-Schell 
maeb...@vandals.uidaho.edu; Scott Hamilton scotthamil...@live.com; Sharon  
Steve pianica...@comcast.net; Sheri Meyer sheme...@cisco.com; Steve  Gail 
crescentc...@nwi.net; Steve and Jo stevejojohn...@msn.com; Susan  Ted Roth 
susanema...@mchsi.com; Tmic tmic-list@eskimo.com; Tom  Deb 
t...@ddoel.com; 
vanessa Quinn vanessa.qu...@dhs.gov; Wayne wme...@ci.everett.wa.us; Zsolt  
Patty zdor...@comcast.net
Sent: Thu, August 26, 2010 1:52:18 PM
Subject: [TMIC] update on Michael


Hello Family and Friends,
Michael slipped peacefully away yesterday evening at 9:30 p.m. He is now in a 
much better place.  

 
Thank you for all your thoughts and prayers on his behalf.  The family greatly 
appreciates all the support and love you have all sent our way as we struggled 
through this past year.
 
with love and gratitude,
The Hammond Team

Re: [TMIC] Jude (hey Jude) Talked on Phone

[kimr1999]

GREAT NEWS!!!

--- On Mon, 7/26/10, pjv1...@chartermi.net pjv1...@chartermi.net wrote:


From: pjv1...@chartermi.net pjv1...@chartermi.net
Subject: [TMIC] Jude (hey Jude) Talked on Phone
To: tmic tmic-list@eskimo.com
Date: Monday, July 26, 2010, 10:23 PM


Prayers, antibiotics, food and fluids have all helped Jude recover from her 
latest UTI.  I talked with her tonight on the telephone and I'm amazed how well 
she sounds.  Jude does not remember my visit last week.  She was surprised when 
her husband told her I had visited.  That's how sick she was.  

Jude remembers writing to the tmic and asking Does anyone remember jude, but 
she doesn't remember getting any responses.  I told her to give it a try again, 
because we are answering and writing, but she doesn't respond to us.  

She might have Dave set up the laptop tomorrow.  I'm going to send her a note 
and put something in the subject line so she recognizes me and opens my post.

Jude answered when I called on her home phone.  I don't know if she uses the 
cell phone or not.  I'm going to check in on her and see if I can get some 
addresses on her laptop.  Maybe we can get her back to helping us with her 
experience and intelligence. 

Patti - Michigan

Blessings to all
Patti - Michigan

Re: [TMIC] good to see posts

[kimr1999]

John, it is understandable to feed a Loss for what we once Had depression 
is one of the hardest things to admit for me (now on Cymbalta). I have tried to 
stay up beat and happy but have days that I just want to sleep and forget TM 
came into my life. But after joining this site I have come to realize I had to 
learn to depend on others, and use friends on this site for support. We all 
have different symptoms from TM but also a lot of us have the same. We are all 
in this together and no topic or question is off limits. We are here for each 
other for support, encouragement and questions. 
--- On Tue, 7/27/10, Janice Nichols jan...@centurytel.net wrote:


From: Janice Nichols jan...@centurytel.net
Subject: Re: [TMIC] good to see posts
To: john snodgrass jcs...@yahoo.com, transverse myelitis 
tmic-list@eskimo.com
Date: Tuesday, July 27, 2010, 8:23 AM



Have you just found this website?    I am not familiar with your name.    
Regardless, we welcome you with open arms!   
You are right, the depression from TM is not clinical/chemical, it is the 
isolation felt from having such a rare disease and your life as you have always 
know it,
taken from you. Those are 2 big hits that have left most of us on some kind 
of medication for depression.    I take Zoloft.
Faith and good humor are huge assets, along with determination to improve as 
far as possible.
 
How has TM left you physically?   Can you walk, or do you use a wheelchair?    
Do you have family support?   You are under no obligation to answer 
these
questions, we all just have a pretty good idea of each other's situation 
through conversations like this.    Some people like to stay more private. 
Regardless,
we welcome any comments, questions, etc.    
Hope to hear from you, Janice from Missouri
 




From: john snodgrass 
Sent: Tuesday, July 27, 2010 6:49 AM
To: transverse myelitis 
Subject: [TMIC] good to see posts





it is good to see emails from this list.

having been over 2 years with TM there have been times of depression that I 
have never experienced even with the depression you have with the death of 
loved ones.

I did read of this depression, I think it was on the ninds website, and 
understood it when it happened.

I just determined that it was not clinical and decided to go to sleep. when  i 
woke up it was gone.

My Neurologist said my faith and good humor would be instrumental in my 
recovery.

He is determined that i will.

Re: [TMIC] what is banding

[kimr1999]

Mine is on my waist area T-10 right side only, feels like and Indian Burn can 
not take clothes touching that area, all pants now have to be elastic and I 
look like Urkul with them pulled up so hight. 

--- On Sun, 7/25/10, Jan Hargrove jmh1...@sbcglobal.net wrote:


From: Jan Hargrove jmh1...@sbcglobal.net
Subject: Re: [TMIC] what is banding
To: Gerry Surette suret...@sympatico.ca, i.whidd...@sky.com, 
tmic-list@eskimo.com
Date: Sunday, July 25, 2010, 10:52 AM






Gerry,
 
Banding was described to me as the place where the nerves 'lost' 
contacti.e., tm struck me at the t8...(bra line)and banding
was around my body at that spotthe banding was the nerve endings 
firing in attempt to reconnect...(I always thought it
was the bra God, getting even with me 'cause I hated bras!!)

Hope this helps, janh



From: Gerry Surette suret...@sympatico.ca
To: i.whidd...@sky.com; tmic-list@eskimo.com
Sent: Sun, July 25, 2010 4:31:08 AM
Subject: [TMIC] what is banding



Iris. I would like to know what banding is and how it relates to the body  
thanks gerry montreal 

RE: [TMIC] TM Info request

[kimr1999]

My nero told me that with any spinal cord injury (TM is classified as such) 
have a hard time regulating there body tempature. You have al the support you 
need on this site, no question if off limits and we all share in our lifes 
triumphs and troubles
 
Kim 
TM- Oct 04  T-10

--- On Sun, 7/25/10, Janet Dunn j.d...@shaw.ca wrote:


From: Janet Dunn j.d...@shaw.ca
Subject: RE: [TMIC] TM Info request
To: 'Rev. Craig Crossman' revcross...@gmail.com, tmic-list@eskimo.com
Date: Sunday, July 25, 2010, 1:35 PM








Welcome to our group, sorry you had to find us!  Heat will affect some of us, 
won’t affect others.  Cold affects some, not others.  TM should stand for 
Totally Miscellaneous because all symptoms vary, except for usually the banding 
and the pain.
 
Janet  Injured at T4 – T5
 


From: Rev. Craig Crossman [mailto:revcross...@gmail.com] 
Sent: July 25, 2010 10:26 AM
To: tmic-list@eskimo.com
Subject: [TMIC] TM Info request
 
Hello,
    I was very glad to find this e-list. I am “new” to TM having been 
diagnosed one year ago. We moved from PA to Kansas in April. This has been a 
hot summer with 20+ days straight of temps in upper 90’s to low 100’s, and I 
find I am having a greater number of symptoms than normal. Does anyone know if 
TM patients are adversely affected by heat? My doctor is not very familiar with 
TM and I won’t see a neurosurgeon until September.
    Thanks, and God bless.
 
 
 
Rev. Craig Crossman
First Baptist Church
615 W. Webster St.
Colby, KS 67701
W - (785)462-2867/ Cell - (785)443-5154
revcross...@gmail.com
www.firstbaptistcolby.org
 

RE: [TMIC] about Jude (Hey Jude)

[kimr1999]

Patty, you just sumed up what I have been trying to say and post! Thank you!
 
Pam is missed by so many and Jude has been such a big part of the TM family!
 
Thank you
Kim
 
TIAD..

--- On Fri, 7/23/10, Patricia Cooley patticoole...@gmail.com wrote:


From: Patricia Cooley patticoole...@gmail.com
Subject: RE: [TMIC] about Jude (Hey Jude)
To: pjv1...@chartermi.net, 'tmic' tmic-list@eskimo.com
Date: Friday, July 23, 2010, 11:21 AM


PATTI - BE SURE TO LET JUDE KNOW THAT WE ALL DO REMEMBER HER AND MISS HER 
TERRIBLY.  WHEN I FIRST FOUND THE TM CLUB A LITTLE OVER 2 YEARS AGO, I KNOW IT 
SAVED MY SANITY.  I FELT SO ALONE AND NO ONE KNEW WHAT MY BODY WAS GOING 
THROUGH.  I WAS SO DEPRESSED, I WAS THINKING OF PAINLESS WAYS TO END IT ALL.  
WHEN I FOUND THIS SITE, BOTH JUDE AND PAM WERE POSTING QUITE OFTEN AND THEY 
RESPONDED TO MY NEEDS AND MADE ME FEEL THERE WAS HOPE.  I FOUND PEOPLE WHO 
COULD ANSWER MY QUESTIONS AND MADE ME LAUGH, ESPECIALLY PAM AND HER EMAIL JOKES 
SHE SENT ME EACH DAY.  OH, HOW I MISS HER AND JUDE.

WE WENT THROUGH PAM'S FOOT SURGERY AND ALL OF JUDES PROBLEMS WITH HER DOCTOR 
AND HOSPITAL WITH HER.  PLEASE LET JUDE AND DAVE KNOW WE ARE PRAYING FOR THEM 
BOTH, AND TELL JUDE WE WILL BE WAITING FOR HER TO BE ABLE TO SEND US A POST.

TIAD (FOR PAM)

PATTI - WISCONSIN

-Original Message-
From: pjv1...@chartermi.net [mailto:pjv1...@chartermi.net] 
Sent: Wednesday, July 21, 2010 8:23 PM
To: tmic
Subject: [TMIC] about Jude (Hey Jude)

I talked with Jude's husband, David, this evening after receiving a message 
from him that she is in a hospice program.   David said she went to a hospice 
camp for ten days and came home feeling better last week.  Then she woke up 
during her first night home with a headache and has gone down hill from there.

David said Jude has not been talkative lately, but I asked if I could visit 
with her tomorrow just to sit with her.  I'm planning to visit in the afternoon.

The last time I heard from Jude was the message that she sent Does anyone 
remember Jude?  

Patti - Michigan

Re: [TMIC] about Jude (Hey Jude)

[kimr1999]

Please tell Jude we are praying for her and David, She has been such a big part 
of the TM network and has given us all great advice and has been so 
suportative.  
 
I hope and pray she is doing well and can find some type of peace from the pain 
she has been in
 
If you do see her tell her she has a lot of support and prayers her way

--- On Wed, 7/21/10, pjv1...@chartermi.net pjv1...@chartermi.net wrote:


From: pjv1...@chartermi.net pjv1...@chartermi.net
Subject: [TMIC] about Jude (Hey Jude)
To: tmic tmic-list@eskimo.com
Date: Wednesday, July 21, 2010, 9:23 PM


I talked with Jude's husband, David, this evening after receiving a message 
from him that she is in a hospice program.   David said she went to a hospice 
camp for ten days and came home feeling better last week.  Then she woke up 
during her first night home with a headache and has gone down hill from there.

David said Jude has not been talkative lately, but I asked if I could visit 
with her tomorrow just to sit with her.  I'm planning to visit in the afternoon.

The last time I heard from Jude was the message that she sent Does anyone 
remember Jude?  

Patti - Michigan

[TMIC] Iron traped in brain -

[kimr1999]

Hi,
Have you been following the information about iron buildup in the brain that an 
Italian doctor thinks may be causing MS?  A kink in the jugglar vein may be 
preventing iron from leaving the brain where it builds up and attacks 
the myelin sheathing of the cerebral nerves.  TM is so close to this.  I am 
excited!! A stent is inserted in the vein opening it up and voila!  Look on 
utube for some of the patients before and after. And look under CCSVI on the 
webb.  There is hope!!!

[TMIC] In Memory of our TM Friend Pam Montz

[kimr1999]

In Memory of our fellw TM friend Pam Montz, it has been one year ago the lord 
took you home...
 
He Only Takes The Best
God saw they were their happiest and 
someone would not let that be. 
So He put his arms around them and whispered 
Come with Me.
With tear filled eyes we watched them,
suffer and fade away. Although we 
loved them deeply, We could not
make them stay.
A golden heart stopped beating,
hard working hands put to rest.
God broke our hearts to prove to us,
He only takes the best.


 

Re: [TMIC] banding

[kimr1999]

Yes I do..  and feet burn when stressed
 
Kim - Atlanta  T-10  TM10/06/04

--- On Sat, 6/5/10, Kevin Wolfthal wolft...@optonline.net wrote:


From: Kevin Wolfthal wolft...@optonline.net
Subject: [TMIC] banding
To: tmic-list@eskimo.com
Date: Saturday, June 5, 2010, 4:28 PM




Does anyone find that the sensation of banding worsens during times of
emotional stress?

Kevin

Re: [TMIC] OT bed question

[kimr1999]

I also now sleep in a recaliner... I can not get turned over in bed and on the 
reclineer I can grap the sides and helps me to turn over... I do miss my 
bed!!!   :(

--- On Thu, 6/3/10, Dalton Garis malugss...@gmail.com wrote:


From: Dalton Garis malugss...@gmail.com
Subject: Re: [TMIC] OT bed question
To: Jim Lubin jlu...@eskimo.com, Akua a...@artfarm.com, Kevin 
Wolfthal wolft...@optonline.net, tmic-list@eskimo.com
Date: Thursday, June 3, 2010, 11:57 PM


FOR ME, THE RECLINING CHAIR WAS MUCH MORE IMPORTANT THAN THE BED, SINCE I DON’T 
SLEEP THAT WELL ANYWAY,  BUT I HIT THE RECLINER OFTEN AND IT MUST BE 
COMFORTABLE ENOUGH TO NAP IN. THOSE NAPS COUNT WITH ME.


On 4/6/10 5:37 AM, Jim Lubin jlu...@eskimo.com wrote:


I have a hospital bed with this mattress pad overlay.
http://www.parentgiving.com/shop/silicore-bed-pad/shop-parent-giving-1425.html 

SILICORE® Bed Pad cushions and protects all pressure-prone areas of the body. 
SPENCO® SILICORE® Fibers, unique siliconized hollow core shafts that won’t mat 
down, retain their loft and air flow. Washable and dryable. Reversible with 
moisture-resistant nylon on the other side. Made in USA. 78 x 36.

At 06:11 PM 6/3/2010, Akua wrote:

I didn't get to shop or choose either -- only knew i needed
a hospital bed


Again the ability of the bed itself to move/ adjust mediates
and aids whatever mattress.  I think the mattress i got is
crap i can feel the metal springs with my hands, but my body
doesn't noticesometimes i go to sleep
nearly sitting up and other times I am laying flat --- sometimes legs slightly 
raised
(a fun way to exercise in bed)
that  (and six pillows) is wonderful aid to going to sleep
soon after  I adjust myself.

Akua



Jim Lubin  
jlu...@eskimo.com
http://makoa.org/jim 
disAbility Resources: http://www.makoa.org
 http://www.makoa.org/ http://www.makoa.org/jlubin/charitybadge




 http://www.makoa.org/jlubin/charitybadge 

Re: [TMIC] alive

[kimr1999]

Totally agree Grace, we are here to support and lend friendship not judge

--- On Fri, 5/21/10, Grace M. grace...@gmail.com wrote:


From: Grace M. grace...@gmail.com
Subject: Re: [TMIC] alive
To: Maggie magiema...@hotmail.com
Cc: tmic-list@eskimo.com
Date: Friday, May 21, 2010, 10:21 AM




All right. People who experience a life changing illness, do not all reach a 
point of acceptance at the same time.  It is a process and there is no specific 
time limit or gauge that can determine when that time of acceptance will 
come.   Asking for *understanding* does not mean that one is sitting on the 
pity pot.
 
In defense of Jeron, I saw nothing in his initial post that indicated that he 
was looking for pity. On the contrary I saw a heartfelt post from someone who 
was looking for understanding from others who have been through the same 
experience.  Just because you (Or I.) have come to a point of acceptance, does 
not give us the right to insinuate that someone else who is not at the same 
point in their journey, should be where we are---instead we should respond with 
mindful kindness.  We don't all *get there* within the same time frame nor do 
we all take the same route.  Your way is not better, nor is it lesser---it is 
all very individualized.  
 
The majority of people who responded to Jeron's post, did so with understanding 
and kindness.  I would hope that we all continue to do so.
 
Respectfully,
 
Grace
 
 
 
 
 
    

 
 
 

Re: [TMIC] Where TM struck

[kimr1999]

I live in Atlanta, GA was on business trip in Dallas, TX when TM struck in 04

--- On Wed, 5/19/10, ladyno...@aol.com ladyno...@aol.com wrote:


From: ladyno...@aol.com ladyno...@aol.com
Subject: Re: [TMIC] Where TM struck
To: jan...@centurytel.net, tmic-list@eskimo.com
Date: Wednesday, May 19, 2010, 7:09 PM



I live in Michigan, but I was in Minnesota, attending a wedding, when my TM 
struck

Have a Blessed Day, Naomi


-Original Message-
From: Janice Nichols jan...@centurytel.net
To: tmic-list@eskimo.com
Sent: Tue, May 18, 2010 12:04 am
Subject: [TMIC] Where TM struck



I did not get many replies to my asking where people were living when TM struck 
them. Actually, it was really scattered. Sorry.
Janice

Re: [TMIC] TMIC Neurontin--does it exhaust you

[kimr1999]

I tried Neurontin or Lyrica both make me lathargic and could not function. I 
was switched to Cymbalta 60mg a day and feel better. I can tell if I miss a day
 
Kim   TM -T10 10/06/09
--- On Sun, 4/18/10, fr...@franksheldon.com fr...@franksheldon.com wrote:


From: fr...@franksheldon.com fr...@franksheldon.com
Subject: Re: [TMIC] TMIC Neurontin--does it exhaust you
To: Jill Posner posnerj...@yahoo.com, Janice Nichols 
jan...@centurytel.net, Neil McNeil n_...@hotmail.com, 
we4king...@verizon.net, tmic-list@eskimo.com
Date: Sunday, April 18, 2010, 8:01 AM



 






Are there other options?


Yes, I take Phenobarbital 15 mg in AM and 45 mg. at bed time instead of 
Neurontin or Lyrica (Both tried and failed).


I go to Dr. Kerr along with visits to Dr. Ware at the Montreal General Hospital 
Pain Center where I receive excellent care.


F

Re: [TMIC] OT My Mom

[kimr1999]

Kevin, 
May the peace which comes from the memories of love shared, comfort you now and 
in the days ahead. May the comfort of God help you during this difficult time. 
Your TM family is thinking of you during this difficult time. 

--- On Sat, 3/20/10, Kevin Wolfthal wolft...@optonline.net wrote:


From: Kevin Wolfthal wolft...@optonline.net
Subject: [TMIC] OT My Mom
To: tmic-list@eskimo.com tmic-list@eskimo.com
Date: Saturday, March 20, 2010, 5:50 PM



My Mom passed sometime during the night Friday night.

I am struggling to absorb this.

At least I had a few hours with her before she passed
because she was brought home from the hospital during
the day Friday.

I told her I loved her many times. She was in such a
weakened state she could barely nod, but she knew who
I was and what I was saying.

I thought..hoped I'd have a little more time with her,
but at least she is not suffering anymore.

Thank you all for your kindness during this difficult
time.

It is painful.

Kevin

Re: [TMIC] OT Prayer Request - Update

[kimr1999]

Whenever there's a problem,
When you really need an answer,
On HIM you can depend.
Only FAITH can 







 
Whenever there's a problem,
Wherever there's dispair
Just bow your head in prayer and know
That God will always be there.
When things look bleak and dreary,
When it seems that no one cares,
Have faith, my friend, in our Lord
And he will answer all your prayers.
I know sometimes it's hard,
Things don't seem to work out right,
But it truly is quite pointless
To kick or scream or fight.
When you really need an answer,
On HIM you can depend.
Only FAITH can move a mountain -
So, have FAITH in God, my friend!
 move a mountain -
So, have FAITH in God, my friendWherever there's dispair
Just bow your head in prayer and know
That God will always be there.
When things look bleak and dreary,
When it seems that no one cares,
Have faith, my friend, in our Lord
And he will answer all your prayers.
I know sometime
 
When you really need an answer,
On HIM you can depend.
Only FAITH can move a mountain -
So, have FAITH in God, my friends it's hard,
Things don't seem to work out right,
But it truly is quite pointless
To kick or scream or fight.
When you really need an answer,
On HIM you can depend.
Only FAITH can move a mountain -
So, have FAITH in God, my friend!
 

 

 
Whenever there's a problem,
Where
 
Whenever there's a problem,

Whenever there's a problem,
Wherever there's dispair
Just bow your head in prayer and know
That God will always be there.
When things look bleak and dreary,
When it seems that no one cares,
Have faith, my friend, in our Lord
And he will answer all your prayers.
I know sometimes it's hard,
Things don't seem to work out right,
But it truly is quite pointless
To kick or scream or fight.
When you really need an answer,
On HIM you can depend.
Only FAITH can move a mountain -
So, have FAITH in God, my friend!
 
Wherever there's dispair
Just bow your head in prayer and know
That God will always be there.
When things look bleak and dreary,
When it seems that no one cares,
Have faith, my friend, in our Lord
And he will answer all your prayers.
I know sometimes it's hard,
Things don't seem to work out right,
But it truly is quite pointless
To kick or scream or fight.
When you really need an answer,
On HIM you can depend.
Only FAITH can move a mountain -
So, have FAITH in God, my friend!ver there's dispair
Just bow your head in prayer and know
That God will always be there.
When things look bleak and dreary,
When it seems that no one cares,
Have faith, my friend, in our Lord
And he will answer all your prayers.
I know sometimes it's hard,
Things don't seem to work out right,
But it truly is quite pointless
To kick or scream or fight.
When you really need an answer,
On HIM you can depend.
Only FAITH can move a mountain -
So, have FAITH in God, my friend!
Whenever there's a problem,
Wherever there's dispair
Just bow your head in prayer and know
That God will always be there.
When things look bleak and dreary,
When it seems that no one cares,
Have faith, my friend, in our Lord
And he will answer all your prayers.
I know sometimes it's hard,
Things don't seem to work out right,
But it truly is quite pointless
To kick or scream or fight.
When you really need an answer,
On HIM you can depend.
Only FAITH can move a mountain -
So, have FAITH in God, my friend!
 

--- On Thu, 2/18/10, Kevin Wolfthal wolft...@optonline.net wrote:


From: Kevin Wolfthal wolft...@optonline.net
Subject: Re: [TMIC] OT Prayer Request - Update
To: lbieh...@earthlink.net, tm  tmic-list@eskimo.com 
tmic-list@eskimo.com
Date: Thursday, February 18, 2010, 11:30 AM



Hi Lori and all,

My Mom is not doing well. She can't walk and her right hand is affected.
She is very depressed. She is in a nursing home for rehab, but is refusing
to eat. She also suffers from mild dementia, but the stroke may have made
it worse. When I call her I try to be as positive as I can, though I 
just want
to cry. I tell her she will be okay and please eat and do the things they
ask her to do. She sounded better last week, but I think her situation has
sunk in.

I sleep from exhaustion, but not well..haven't for years. To be honest, I
think I began giving up on life a few years ago. Doctors were doing nothing
for me, not even helping my pain. I am gaunt now and fairly bedridden. 
Anytime
I've tried to do something positive I hit a brick wall. I don't see any 
reason to
go on. My Mom and I have been each others only support. I do have a 
companion
I hire who helps us a few hours every night. She is an ANGEL. She is 
bringing my
Mom some Ensure tonight.

Thank you for your concern. It is more meaningful than I can express.

Kevin






Lori Biehler wrote:
 Hi Kevin,
 How is your mom doing? How are you doing? Are you sleeping OK?
 Lori

 -Original Message-
 From: Kevin Wolfthal [mailto:wolft...@optonline.net]
 Sent: Monday, February 15, 2010 6:36 PM
 To: Todd Tarno; tm  tmic-list@eskimo.com
 Subject: Re: [TMIC] OT Prayer Request


 Todd,
 Thank you and 

RE: [TMIC]

[kimr1999]

Jenna and I were taling the other day that we have not heard from Jude either were also a bit worried about her. 

Jude if you see this let us know how your doing!! we all miss you!--- On Sat, 2/13/10, Patricia Cooley patticoo...@wi.rr.com wrote:
From: Patricia Cooley patticoo...@wi.rr.comSubject: RE: [TMIC]To: "'Rebecca'" wrabal...@gt.rr.com, tmic-list@eskimo.comDate: Saturday, February 13, 2010, 11:10 AM




 

NO YOU HAVN’T MISSED ANYTHING. I TOO HAVE BEEN THINKING OF HER LATELY. I HOPE IF SHE SEES THESE SHE WILL RESPOND TO LET US KNOW HOW THINGS ARE GOING. I KNOW THAT SHE WAS REALLY THROWN WHEN WE LOST OUR DEAR FRIEND PAM. I THINK WE ALL WERE. I HAVEN’T A LOT OF PAM’S E-MAILS SO I CAN RE-READ THEM. IT MAKES ME FEEL THAT SHE IS STILL WITH US.

PATTI - WISCONSIN



From: Rebecca [mailto:wrabal...@gt.rr.com] Sent: Saturday, February 13, 2010 9:48 AMTo: tmic-list@eskimo.comSubject: [TMIC] 


I have not seen Jude post in sometime. Have I missed anything?

[TMIC] God's Cake

[kimr1999]

   
 
 



Sometimes we wonder, What did I do to deserve this? or Why did God have to 
do this to me? Here is a wonderful explanation! A daughter is telling her 
Mother how everything is going wrong, she's failing algebra, her boyfriend 
broke up with her and her best friend is moving away. 

Meanwhile, her Mother is baking a cake and asks her daughter if she would like 
a snack, and the daughter says, Absolutely Mom, I love your cake. 

Here, have some cooking oil, her Mother offers. Yuck says her daughter. 

How about a couple raw eggs? Gross, Mom! 

Would you like some flour then? Or maybe baking soda? Mom, those are all 
yucky! 

To which the mother replies: Yes, all those things seem bad all by themselves. 
But when they are put together in the right way, they make a wonderfully 
delicious cake! 

God works the same way. Many times we wonder why He would let us go through 
such bad and difficult times. But God knows that when He puts these things all 
in His order, they always work for good! We just have to trust Him and, 
eventually, they will all make something wonderful! 

God is crazy about you. He sends you flowers every spring and a sunrise every 
morning. 

Whenever you want to talk, He'll listen. He can live anywhere in the universe, 
and He chose your heart. 

If you like this, send this on to the people you really care about. I did. 

Life may not be the party we hoped for, but while we are here we might as well 
dance.

Re: [TMIC] Yooo...hooo....TMIC Members, where are you?

[kimr1999]

well since were on tht cold... this winter has been the worst pain I have had 
to date. Anone else?

--- On Sun, 1/31/10, Janice Nichols jan...@centurytel.net wrote:


From: Janice Nichols jan...@centurytel.net
Subject: Re: [TMIC] Yooo...hoooTMIC Members, where are you?
To: L T CHERPESKI cherp...@msn.com, tmic-list@eskimo.com, Grace M. 
grace...@gmail.com
Date: Sunday, January 31, 2010, 8:25 PM





I am here and you are right, it is so quiet. I sent Frank a couple of 
pie recipes that we really like.    I think he needs to try them all out
before he puts them in his book.   What subject does anyone want to 
talk or comment about?
Janice
PS   I am trying to add color to our lives!
 




From: L T CHERPESKI 
Sent: Sunday, January 31, 2010 6:36 PM
To: tmic-list@eskimo.com ; Grace M. 
Subject: Re: [TMIC] Yooo...hoooTMIC Members, where are you?



Hi Grace,
 
I'm here - but you're right - extremely quiet.  TOO quiet..
 
And Frank - if you were asking for anything except pie recipes, I could help 
you out.  I learned many moons ago that I am not capable of making a good 
pie!!  I'm sure you'll get some good replies when everyone wakes up.
 
Linda

- Original Message - 
From: Grace M. 
To: tmic-list@eskimo.com 
Sent: Sunday, January 31, 2010 5:02 PM
Subject: [TMIC] Yooo...hoooTMIC Members, where are you?


Where is everyone?  The last msg that I got was from Frank, looking for pie 
recipes.
 
Anyone out there?

[TMIC] Life is too short

[kimr1999]

Life is too short to wake up in the morning with regrets. So love the people who treat you right, forget about the ones who don't and believe that everything happens for a reason. If you get a chance, take it. If it changes your life, let it. Nobody said that it'd be easy, they just promised it would be worth it.  

[TMIC] International Day of Acceptance - January 20th

[kimr1999]

Friends of 3E Love,

Help us spread the word about our day of celebration and awareness.
Please forward this email to your friends and family that might be interested. 
Ask them to do the same. 
INTERNATIONAL DAY OF ACCEPTANCE - January 20, 2010
To achieve social acceptance of disability. 
To honor the late Annie Hopkins, founder of 3E Love and creator of the 
International Symbol of Acceptance.
3E Love is a social entrepreneurial awareness experiment.

Read detailed announcement at 
http://3elove.com/blog/january-20th/


Wear your heart on your sleeve on January 20th.
Tell the world you embrace who you are; a person with social rights, who has an 
opinion, who has interests, who has goals and who loves life; a person who is 
empowered to make a difference in the world and not be without a voice in 
society. You are not living disabled, you are living.
To our supporters: Join us in telling the world that you are accepting of 
people with disabilities. As our parents, siblings, relatives, spouses, 
children, lovers, coworkers, teachers, personal assistants, friends, and anyone 
else - you also have a role in our culture and life. And you can have an impact 
on the future if you demonstrate your acceptance to others.
Let's join together to:
Embrace diversity. Educate your community. Empower each other. Love life.
Start the conversation of acceptance on January 20th with the International 
Symbol of Acceptance: Wear a t-shirt. A sweater. A hoodie. Use a bag. Pin a 
button to your jacket, chair strap or backpack. Ink a temporary tattoo onto 
your hand. Draw it on if you have to! Ask your friends to join us as well. And 
for a final touch change your profile picture on Facebook to the symbol. Get 
people talking!
When a person asks about the symbol, What's that mean? Well now it's your 
turn to tell them your story or what its significance is to you.

And maybe next time they will look at the antiquated traditional symbol a 
little differently..

[READ MORE]Forward this email to a friend 
Fore more information about 3E Love, visit http://3elove.bigcartel.com
Spread the word about January 20th on Facebook. Invite your friends to attend.
http://www.facebook.com/event.php?eid=247073177389index=1
Questions? Email Stevie at 3el...@gmail.com


Unsubscribe / Change Profile 
Powered by YourMailingListProvider  

Re: [TMIC] Linda's recurrent TM

[kimr1999]

I got TM in 04 and had recurrent in 07 per my nero I do not have MS but TM 
reoccured


--- On Thu, 1/7/10, Laura Beaudin laura.beau...@gmail.com wrote:


From: Laura Beaudin laura.beau...@gmail.com
Subject: Re: [TMIC] Linda's recurrent TM
To: Regina Rummel regina...@sbcglobal.net
Cc: tmic-list@eskimo.com
Date: Thursday, January 7, 2010, 2:09 PM


Hi Regina,

There is also something called Devic's which is essentially MS, but only in the 
spine.

Laura
On Practical-Homeschooling: Free Unit Studies About Canada and China.
http://www.practical-homeschooling.org


On 07/01/2010 11:22 AM, Regina Rummel wrote:
 Linda,
 I don't like the sound of recurrent TM.
 Frank explained some time ago that one ocurrence is TM, the second one 
 indicates MS.  Perhaps I misunderstood.
 Did your doctor tell you that you had recurrent TM?
 How can we tell that we have it without an MRI?
 Caring for you, Linda and always hoping for good news.
 R
 

Re: [TMIC] Linda's recurrent TM

[kimr1999]

That would be me Frank
 With more than one attack but no lesions on the brain or other MS indicators, 
people are then diagnosed with recurrent TM.

--- On Thu, 1/7/10, Barbara H. barbara...@gmail.com wrote:


From: Barbara H. barbara...@gmail.com
Subject: Re: [TMIC] Linda's recurrent TM
To: fr...@franksheldon.com
Cc: Regina Rummel regina...@sbcglobal.net, tmic-list@eskimo.com
Date: Thursday, January 7, 2010, 2:58 PM


No, it is not correct, according to the articles I quoted earlier and according 
to the experience of several people here.. Some people have more than one 
attack without having further symptoms of MS. A second attack indicates MS is a 
strong possibility, but it isn't always MS. With more than one attack but no 
lesions on the brain or other MS indicators, people are then diagnosed with 
recurrent TM.

Barbara H.
http://barbarah.wordpress.com


On Thu, Jan 7, 2010 at 2:53 PM, fr...@franksheldon.com wrote:









Frank explained some time ago that one occurrence is TM, the second one 
indicates MS.  Perhaps I misunderstood.


Yes, That is exactly correct


F

[TMIC] Check out this trike motorcycle

[kimr1999]

Check out this trike motorcycle that they built on American Chopper
it's done for the Christoher Reeve foundation,,
 
we could call ourselves TM Trikers!!!
 
 
http://tlc.discovery.com/videos/american-chopper-season-6-clips-wheelchair-chopper-plans.html

[TMIC] Thougt for the New Year

[kimr1999]

    Adversity comes to everyone. It's how you take it; it's how you deal 
with it. That is what really defines you in the long run. There's a positive in 
everything in life. You've got to find it...you've got to dig hard, and it 
hurts, but there's always something. You never see the stars until it is dark.
King Solomon expressed the same thought many years ago when he penned:
You're a poor specimen if you can't stand the pressure of adversity. Prov.. 
24:10 

RE: [TMIC] January Birthdays

[kimr1999]

Happy Birthday !!

--- On Sun, 1/3/10, Patricia Cooley patticoo...@wi.rr.com wrote:


From: Patricia Cooley patticoo...@wi.rr.com
Subject: RE: [TMIC] January Birthdays
To: 'TMIC' tmic-list@eskimo.com
Date: Sunday, January 3, 2010, 11:43 AM








HAPPY BIRTHDAY TO ALL THE JANUARY BABIES.  I HOPE YOU ALL HAVE A FANTASTIC YEAR!
 
PATTI - WISCONSIN
 

Please send any additions or corrections to tmic-l...@eskimo.com.

1-7 Lauren (sugal...@adelphia.net)

1/8 Nancy Williams (willj...@aol.com)

1-8 Sandi (sam...@fidmail.com)

1/9 Julienne (julesin...@aol.com)

1/13 Debi (brade...@hotmail.com)

1-17 Jenna Stentz (jkste...@yahoo.com )

1/20 Kay Cole (k...@cole.gen.nz)

1-21 Blaine Frye (xring...@mwt.net)

1/21 Carol Easterday (snow121...@hotmail.com)

1/23 Patti Dotson (ll...@aol.com)

1-27 Pat S. (w2sm...@aol.com)

1-28 Holly (r...@aol.com)

1-28 Sally (thenavigato...@aol.com)

1/30 Cora (ceckenb...@wildblue.net)

[TMIC] TM video on You Tube

[kimr1999]

 
http://www.youtube.com/watch?v=e9H0fSaTbKA
 
TM video Greg just posted on You Tube.. it's really good... pass it on to 
everyone you know

RE: [TMIC] Hey Jude...it's me!

[kimr1999]

Jude so glad to see your back!  You were missed by all!
 
Kim

--- On Sun, 12/20/09, Patricia Cooley patticoo...@wi.rr.com wrote:


From: Patricia Cooley patticoo...@wi.rr.com
Subject: RE: [TMIC] Hey Jude...it's me!
To: 'Jude Hoops' heyjude48...@aol.com, tmic-list@eskimo.com
Date: Sunday, December 20, 2009, 11:34 AM








Hi Jude:
 
I am so glad to receive your post. We haven’t heard from you in a long while 
and I was beginning to worry about you.  I know the loss of our dear Pam has 
affected all of us.  I think about her all the time and miss her and the jokes 
she used to post.  I know I haven’t been posting a lot lately and I think the 
loss of Pam had a lot to do with it.
 


I am so sorry to hear you may have broken your foot.  At least when something 
like that happens we don’t feel the pain so much.  Let us know what happens 
when you see the Doc.  It sounds like you and Dave are both enjoying the new 
addition to your family.  Pets can do so much to enrich our lives.  With Dave 
retiring, it gives him an outlet that he needs. So much has been happening 
here.  My daughter, who lives down the street, is relocating up north to 
Waupaca.  As a result, we have our house for sale so we can be close to 
family.  At this stage of our lives, we need to be near family.  The last time 
we moved was before TM, so it is going to be so much harder as I have 
difficulty doing all that needs to be done.  We haven’t sold our home yet, but 
during the holidays not too many people are out looking.  I just pray that it 
will be sooon.  I will miss my granddaughters so very much.
 
I wish you, Dave and Harley a very Merry Christmas and a Happy New Year and 
hope to see more posts from you next year!
 
Patti - Wisconsin
 
 
om: Jude Hoops [mailto:heyjude48...@aol.com] 
Sent: Sunday, December 20, 2009 7:30 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Hey Jude...it's me!
 

Hi Guys,

 

It's been a while, but it's me, Jude...

For those of you who recall my name, I'm sorry it has taken so long for me to 
get back into the swing of things.  The death of our dear Pam really took the 
wind out of my sails and laid me low for all this time. 

 

Not one darn thing has changed in my life except that we have added another 
mouth to feed, and he eats constantly and I have yet to find a food that he 
won't eat.  His name is Harley, after Dave's best human friend and is part 
Spaniel/Beagle.  Harley is white with silvery/black large spots and a black 
circle around one eye.  Once Dave figures out how to send pictures to 
the Internet we will post some of the whole family. 

 

Dave is adjusting well to being retired, especially now that he has a buddy 
to hang around with.  I'm not sure what they do out there, but they go tramping 
through the woods behind the house and chase squirrels and whatever else.  
Harley puts his nose to the ground and pulls poor Dave along behind him whether 
Dave wants to go there or not.

 

I have remained pretty much stuck in my bed due to almost constant UTI's and a 
serious aversion to wearing briefs although I have to when I go out which is 
not often.  In fact, I now even have a doctor who makes home visits and I 
really like him so far.  I need to call him as soon as his office opens and 
make arrangements to go to the hospital since I believe I have one seriously 
broken ankle/foot.  This brittle-bone disease is for the birds.

 

I was inspecting my feet and toes for whatever one checks their Transverse 
Myelitis feet against; black spot, spider webs and such, and just like several 
years ago, I heard a cracking sound and although I have very little sensation, 
it does seem to hurt quite a bit.

 

So anyway...what's up will all of you people?  What kind of trouble have my old 
friends gotten into?  C'mon, spit it out...You know I will get it out of you 
sometime...as the old adage goes, you can run, but you can't hide.   Ok, 
let's start with you Doctor Rick; have you and the fam gone on any neat 
excursions out into the wilds of the world?  And how is Terry doing?  Still up 
and getting around in spite of good old TM?  Miss Ella...I haven't heard a word 
from you or any of your 105 sisters.  I'm sure that you are busy getting ready 
for some celebration or another.  I know it's got to be someone's birthday or 
something.

 

I now have a new computer with which I am having a love/hate relationship 
with.  This one does all kinds of new tricks and treats, but it's not the right 
time of year for that so it's not cooperating.  It's got to have something to 
do with that inch or so of white stuff littering the ground, looking like it's 
going to stay for three or four months.  And now, if Dave agrees that I need to 
be seen by the doc, I will probably need to go out for x-rays.

 

 Well friends, I won't take up any more of your time and will let you know what 
the Dr. has to say and if I get casted, what color I will choose.

 

Lots and lots of love,

Jude...

 

 

 

  

 

 

 

Re: [TMIC] OT need advice

[kimr1999]

I was also put on Cymbalta 60mg a day taken in the AM, seems to help with below 
as it does with Candis also

--- On Fri, 12/18/09, CANDIS KALLEY cakal...@embarqmail.com wrote:


From: CANDIS KALLEY cakal...@embarqmail.com
Subject: Re: [TMIC] OT need advice
To: TMIC-LIST TMIC-LIST@eskimo.com
Cc: Kevin Wolfthal wolft...@optonline.net
Date: Friday, December 18, 2009, 2:15 PM


Kevin,

I was Xanax the first 2 years of my TM but, like you, it seemed that it wasn't 
working.  My neuro changed me to Cymbalta which helps with the depression, some 
nerve pain, and my axienty.

See if your neuro will change you or talk to you about other alternatives.

Life is short! Break the rules! Forgive quickly! Kiss slowly! 
Love truly, Laugh uncontrollably . 
And never regret anything that made you smile.


Prayers and thoughts for you and yours,

Candy K.

- Original Message -
From: Kevin Wolfthal wolft...@optonline.net
To: tmic-list@eskimo.com
Sent: Friday, December 18, 2009 1:27:02 PM GMT -05:00 US/Canada Eastern
Subject: [TMIC] OT need advice


Hi friends,

I have been having bad anxiety lately. I've had it a long time, but not 
this bad.

i take xanax, which helps sometimes, but lately not so much. It's gotten 
worse
since I had to give my Mom CPR last year. She is doing better..but I am in
constant stress and worry now. Combined with my TM symptoms, it's
overwhelming.

I try breathing exercises sometimes, but still can't shake this.

How do you deal with anxiety?

Thanks,
Kevin

Re: [TMIC] Age

[kimr1999]

45

--- On Fri, 12/11/09, Janice Nichols jan...@centurytel.net wrote:


From: Janice Nichols jan...@centurytel.net
Subject: [TMIC] Age
To: tmic-list@eskimo.com
Date: Friday, December 11, 2009, 12:35 AM



Hey!
 
I have a request.   I was talking to my neuro and he was curious to know the 
ages
that my website friends were when they were hit with TM.    Do you all mind 
sending
me that info  -  even if you only read messages and don't usually respond?    I 
would like
to get as many ages to him as possible.   I told him you all were a pretty 
cooperative group!
 
Thanks guys
Janice, Missouri

Re: Fwd: [TMIC] November birthdays

[kimr1999]

 Happy
 Birthday November Babies
From: "celr...@aol.com" celr...@aol.comTo: TMIC-LIST@eskimo.comSent: Sun, November 1, 2009 7:50:19 AMSubject: Fwd: [TMIC] November birthdaysHAPPY BIRTHDAY TO ALL YOU NOVEMBER BABIESTIAD!!! JANE  

Re: [TMIC] Looking for TMr's for support groups

[kimr1999]

Kim, - Atlanta, GA





From: jrushton jrush...@columbiaenergyllc.com
To: Jill Z jillybean60...@yahoo..com; tmic tmic-list@eskimo.com
Sent: Monday, September 14, 2009 9:01:14 PM
Subject: Re: [TMIC] Looking for TMr's for support groups


   
Jeanne R from Dayton, WA
 
---Original Message---

From: Jill Z
Date: 9/13/2009 9:55:00 PM
To: Catherine;  Laura Beaudin
Cc: kevin weilacher;  Transverse Mylitis Group
Subject: Re: [TMIC] Looking for TMr's for support groups

Jill From Chicago

--- On Sun, 9/13/09, Laura Beaudin laura.beau...@gmail.com wrote:


From: Laura Beaudin laura.beau...@gmail.com
Subject: Re: [TMIC] Looking for TMr's for support groups
To: Catherine camoa...@yahoo.com
Cc: kevin weilacher hwyfli...@yahoo.com, Transverse Mylitis Group 
tmic-list@eskimo.com
Date: Sunday, September 13, 2009, 8:29 PM


...and I'm Laura from Edmonton, Alberta. :)

On Sun, Sep 13, 2009 at 7:25 PM, Catherine camoa...@yahoo.com wrote:
 Kevin,

 That is a wonderful idea.  Why don't we all just say where we are from .. as
 I have seen here.  Several support groups may start.  Thank you for a great
 idea

 So I will start...

 Catherine, caretaker   Central Mass.

Re: [TMIC] New Medications

[kimr1999]

Same here, I could NOT take Lyrica and Cymbalta at the same time.. just Lyrcia 
alone made me loopy, and lathargic, 





From: Grace M. grace...@gmail.com
To: Robert Pall rp...@neillsupply.com
Cc: tmic-list@eskimo.com
Sent: Thursday, September 3, 2009 9:58:46 AM
Subject: Re: [TMIC] New Medications



Hi Robert,  
 
I took 60 mgs of Cymbalta per day for about two years.  It didn't really help 
with the banding, pain, or sensory symptoms, but it was great for depression.  
I didn't have any side effects.
 
Gracie

Re: [TMIC] Update on Mike

[kimr1999]

Mike and Jill

Through every trial and moment of pain, we stand together to help one another.
Sometimes the hand of a stranger comes along and lifts up our hearts..
Our responsibility is to continue that selfless act of love and pass on the 
comfort.
Blessed are those who mourn for they shall be comforted.
~ Mathew 5:4





From: jrushton jrush...@columbiaenergyllc.com
To: Jill Hammond 3jmhamm...@clearwire.net; tmic tmic-list@eskimo.com
Sent: Thursday, September 3, 2009 7:21:20 PM
Subject: Re: [TMIC] Update on Mike


 Bless your hearts, Mike and Jill..  We will all be holding you in our hearts, 
minds, and prayers.  I wish we could be close to help you with other 
things...Jeanne
 
---Original Message---

From: Jill Hammond
Date: 9/3/2009 6:47:19 PM
To: tmic-list@eskimo.com
Subject: [TMIC] Update on Mike

Well, everyone, here is your first update.  Before I begin, however, I would 
like to thank all of you who have kept me and my family in your prayers, it 
means a lot.  Don’t stop, though, as the  next 7 weeks or so are going to be a 
little rough.  I especially want to thank my family, without their help and 
support; I cannot imagine where I would be.
 
For those that like to be very specific, I found out I do not have what I told 
you last time.  What I have is a tumor in the Maxillary Sinus.  This tumor is a 
Neuro-endocrine type (small cell) of cancer.   There, that should make it clear 
as mud.  
 
Went in yesterday to the Chemo doc, and when he heard that we had to wait until 
next Thursday for our radiation Doc appointment, left the room, came back and 
told us as soon as we were through with him, we could go downstairs and talk to 
the radiation doctor.  The right people and a little help from above just cut 
off another 8 days of waiting.  I can start fighting back.  
 
Today I went in to the doctor’s office and got fitted for my “Hannibal Lector” 
mask.  This mask ensures that you do not move your head at all while receiving 
radiation. Radiation for this is received from a Tomography machine which 
produces the rays electronically.  I will tell you that I could not even open 
my eyes while wearing the mask.. Very claustrophobic, so a little Xanac 
helped.  Now, I go back in for my very first radiation treatment next 
Thursday.  During this 7 week, five day a week treatment, I will receive at 
least 6,000 RAD (Radiation Absorbed Dose) to the cancer.  For those who are not 
aware, just let me say that 6,000 RAD is a LOT.  Unfortunately, my right optic 
nerve may receive much of this.  The optic nerve begins to show damage at 4,500 
RAD, So, I may loose some, or all, vision in my right eye.  There are a lot of 
other little complications like loss of salivary glands, loss of taste (Have 
that already), possible teeth
 problems,  and hair loss (time for a Kojack shave).  
 
The Chemotherapy introduction session is tomorrow and I learn what I get, when 
it will start, if I will need a port and lots of other questions I am sure.  
 
So another update in a week or so.  Take care and be talking with you soon.   
God bless us, everyone,
 Mike and Coach Jill.  

Re: [TMIC] able to move slightly

[kimr1999]

Jim, how wonderful !!! THANK YOU for sharing your video!!! I cried and cried 
when I read you email and to see the video just takes my breath away!

Awesome!!!





From: Jim Lubin jlu...@eskimo.com
To: bradebi brad...@gmail.com; tmic-list@eskimo.com
Sent: Monday, August 24, 2009 7:05:09 PM
Subject: Re: [TMIC] able to move slightly

hehe, I wonder. That is really the only thing I have been doing differently 
lately is playing all those games on Facebook.

At 03:46 PM 8/24/2009, bradebi wrote:

Jim it could be all the Mafia wars you play on facebook!!!
Debi W
 
---Original Message---
 
From: Jim Lubin
Date: 8/24/2009 1:38:52 PM
To: tmic-list@eskimo.com
Subject: [TMIC] able to move slightly
 
The past two weeks I started feeling a tingling in my right lower back. When I 
feel this I am able to move my left thumb! It's been 20 yrs, 4 mos since I was 
paralyzed from the neck down due to TM. When I recline the tingling stops and 
I can not move my thumb no matter how much I try to.

To show that I was actually moving and not just having involuntary twitching, 
I had my nurse tell me when to move and I moved it. Here is the video 
http://www.youtube.com/watch?v=Tw__9ZDv_hU


Jim Lubin   
jlu...@eskimo.com
http://makoa.org/jim 
disAbility Resources: http://www.makoa.org 



 

Re: [TMIC] Re: THE 'FYI' I SENT TO THE LIST YESTERDAY...

[kimr1999]

Lynn, thank you for the informaion were we can look up. I feel that our privacy 
needs to be proteded as misinformain can be dangerous

Thanks!





From: roseofr...@aol.com roseofr...@aol.com
To: tmic-list@eskimo.com
Sent: Thursday, July 23, 2009 1:53:20 PM
Subject: [TMIC] Re: THE 'FYI' I SENT TO THE LIST YESTERDAY...

I would prefer that we refrain from such postings and discussions on the 
list.

The posting I sent was simply for your information because I feel we need
to know what's happening with our health care and our personal information.
We don't have to have a discussion about it.
 
I have been on this list now for approx. 12 yearsand I very rarely sent
posts to the list unless I felt it may be helpful to someone.
I never send jokes or forwardsthey have nothing to do with our situations...
I have many friends on this list and send the jokes, etc. privately.
I don't want to offend anyoneever.so please just hit the delete button
if you feel it doesn't apply to you.
    ~ Lynn

-- 




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Re: [TMIC] Fw: hopkins visit

[kimr1999]

Amanda, I also go to Shepherd Center in Atlanta every 6 months for follow up 
visits and can tell you the facilty is top notch, as a matter of fact they are 
sponsering a river raft trip in NC Aug 22nd, 





From: Todd Tarno toddtm2...@sbcglobal.net
To: tmic-list@eskimo.com; Amanda Diskey adis...@yahoo.com
Sent: Wednesday, July 22, 2009 2:56:18 PM
Subject: Re: [TMIC] Fw: hopkins visit


 Is this all standard testing or do I freak out now? 
 
Please don't freak out, until you get the results back and even then, there are 
people on this list that do live with more than just TM.  They will let you 
know things that have worked for them.  When you find out anything, please let 
us know, so we may help you with that.
Any of the PT is always good.  Once you get a PT, they will start your 
exercising at your level at that time  your exercising will change as your 
level gets better.
BIG Hugs,
Todd in CC,TX


--- On Wed, 7/22/09, Amanda Diskey adis...@yahoo.com wrote:


From: Amanda Diskey adis...@yahoo.com
Subject: [TMIC] Fw: hopkins visit
To: tmic-list@eskimo.com
Date: Wednesday, July 22, 2009, 6:06 AM






- Forwarded Message 
From: Amanda Diskey adis...@yahoo.com
To: tmic-dig...@eskimo.com
Sent: Wednesday, July 22, 2009 6:04:48 AM
Subject: hopkins visit


 
  
Hey everyone! I just got back from Hopkins a couple of days ago, and I have a 
couple of questions. First, I have 2 places on my spine C5-T2 and T9-T10 so he 
is testing me for NMO, ADEM and some others too I think, like lupus. What the 
hell is that? I looked it up and still didn't understand.  Is this all 
standard testing or do I freak out now? How long will it take them to find out 
once I get the blood drawn? It has been almost a year now since my attack 
(August 11th). Has anyone else seen Dr. Vankatesan? That is who I seen, and I 
really wanted to meet Dr. Kerr, but the only person I got to meet was the lady 
that scanned my eyes! Anyway, he wants me to go to Shepherds and ride the FES 
Bike, has anyone done this and gotten good results? I looked on Shepherds 
website and they have a clinical trial with different robotic and manual 
locomotor training?, over ground gait training?, intense resistance and 
plyometric training?, and development
 sequencing?, and estim are being used to help with recovery, strengthening, 
spasm relief and you have to be at least one year post injury. I believe it is 
called the Beyond Therapy Program. What do you all think about these kinds of 
exercise programs? Has anyone tried anything like this? I am willing to try 
anything! Thanks for listening! Hope everyone is doing well and having a 
wonderful week:)
 
Amanda  

 

Re: [TMIC] Please keep praying for Jim

[kimr1999]

For Jim and  Carol


I said a prayer for you  and Jim today 
And know God must have heard. 
I felt the answer in my heart 
Although I heard no word. 

 

I didn't ask for wealth or fame 
(I knew you wouldn't mind.) 
I asked to send you treasures 
Of a far more lasting kind. 

 

I asked that God be near you and Jim 
At the start of each new day 
To grant you health and blessings 
And friends to share your way. 

 

I asked for happiness for you 
In all things great and small, 
But it was God's loving care for you 
That I prayed for most of all. 





From: cjb...@aol.com cjb...@aol.com
To: tmic-l...@eskimo.net
Sent: Tuesday, July 14, 2009 6:51:51 PM
Subject: [TMIC] Please keep praying for Jim

Today is Tuesday July 14th. It has been 10 days since I posted. Unfortunately 
things are not as good today. They had to put him back on the vent because he 
was running a temp of 104, Sunday morning. They have switched antibiotics and 
are hopeful that it will start to work. The doctor said his bed sores are 
getting worse instead of better.He tried to pull out his trach last nite and 
they had to restrain his hand. He is still fighting hard to stay with us, but 
when he is extra tired and in pain he looks at me with an I don't know how much 
more I can take look. I am trying so hard to convince him that he has to get 
well.  GOD BLESS, Carol It is hard to get the internet where we are but I 
will try 




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Re: [TMIC] Unsubscribing for awhile

[kimr1999]

Sorry we were not able to see each other before you left but I don't think I could have handled seeing you and having to say good bye... you will always be my life line and go to person in my TM life and life in general.

... I can still remember the panic and fear when i relapsed last year and then this past January how you were there for me in the hospital daily and surgery day you will always be a true friend to all that know you and the lucky ones that will get to know you in the future
love and miss ya, hope to meet up with you in WA soon
kim Harrison love ya from Hottlanta!!!
-- Original message from Jenna jkste...@yahoo.com: -- 


I just want to let you all know I have to unsubscribe for awhile. I have left GA and will be working my way to Vancouver WA. I am going to be without internet from time to time. And when I do get a chance to get online, I probably won't have much time. But I need to tell you all how very much this group has meant to me, and the support I have gotten over the last OH MY GOODNESS 9 YEARS TO BE EXACT. I just realize the symptoms started the very end of June and I was in TX at the time on a family vacation. Because we couldn't figure out what was wrong with me and why I kept becoming more and more numb, we headed back to GA. We got on late on the 3rd of July. Obviously I had the slow onset TM. I spent most of the 4th in the ER. Being told things like, well you haven't had a stroke, and you don't have a brain tumor, but we don't know what is wrong with you. You need to see a Neuro. ASAP!! I won't get into what a difficult time that was, because so many of us have been through it. But here it is exactly 9 years later and I am so very much better and moving on with my life and trying to get back to the career I had, before I had kids. I am going back to the Airline Training School, I went to in 1983. I am ready to go back into the travel and tourism industries. I had a great career, and now I just need current training to get back into it. So I just wanted to say so long to you my dear and wonderful friends that I will miss very much reading everyday what is going on with you! Dearest Jim Lubin, thank you, thank you, thank you, for starting this for all of us. 9 years ago it was so hard to find out anything about Transverse Myelitis. The only reason I found you was because I had a brother in medical school at the time and he found Dr. Kerr, and what Hopkins was doing and that led me to TMA. Those of you that I am close with know who you are!! Because I don't post to the list that much just to the person. I don't really know why I do it that way, but that is what I do. Dear miss Kim Harrison, no more protest about me leaving, I will miss seeing you and you still have my sweater, so I have to come back to GA to get it!!! Got it girl??? I love you!!Jude, I care so very much about you and I am so happy you are doing better! Please keep in touch when you have time!!There are so many of you I want to say something to, but I just can't this is harder than I thought it would be!!The last person I have to say something about is Pam, she was such a wonderful friend. I miss getting jokes from her and sending jokes to her!! I miss you so very much!! You are so right TIAD!!! I am for the first time in 45 years going to do what is best for me and not live to please others!! 
I love you all and will miss you very much and after I get settled and if I am not over whelmed with being a 45 year old in school 7 hours a day 5 days a week, I will get back on the list again! Jenna P.S. Any of you that might live near Vancouver, WA or Portland, OR let me know. I would love to meet you while I am out in the great northwest!!

Re: [TMIC] Transverse Myelitis Network

[kimr1999]

Barbara, I aslo read the same, Looks like Todd was giving kuddos to the TM quads that were able to type lengthly emails here is what he wrote and as far as I can see it is nothing short of praise how can the below be misread or how was it put Rick? So be carefull when you insinuate
(Todds email) I'm amazed at ALL of your's e-mails. What it must take just to write an e-mails. Both of you DO write wonderful long e-mails. I do treasure each  everyone of your e-mails. 

-- Original message from jharpe...@aol.com: -- 


Good grief, Rick. Todd was not at all griping or insinuating anything. He wrote a very gracious response to the previous e-mails in this thread.

Barbara H.


In a message dated 6/28/2009 9:19:53 P.M. Eastern Daylight Time, ashfo...@att.net writes:


Todd' one of the reasons I reclused from this web site is because I had three members of my immediately family die and I needed to deal with funeral homes and I actually had to ask this list for donations and the people that I thought would help, did just did and I don't remember seeing Todd Tarno's name even as much as a salutation. I'm not picking on you but I know this, If you send a e-mail to Jim or anyone else on this list your email will eventually be answered. This is an amazing web site and if you are not satisfied with your business here, you can always go some where else and I guarentee you'll not find as many peoplewho for you, I'm sorry your a quad, and is every one else is too. So please stop gripping because you feel your 2 cents are not heard, because it is heard. and we all love you and your e-mail gets heard. This was Jim" dream and he could not be able to manage it on his on. We all keep it working. So be carefull when you insinuate. Your friend Rick Ashford.



From: Todd Tarno toddtm2...@sbcglobal.netTo: ladyno...@aol.comCc: TMIC tmic-list@eskimo.comSent: Sunday, June 28, 2009 5:25:50 PMSubject: Re: [TMIC] Transverse Myelitis Network




That won't happen again.

We do enjoy reading ALL of your e-mails.
I'm sadden that I'm unable to answer a few of your e-mails because of how TM has hit you. But, you are right that this site doesn't have many quads, like you  Jim. I'm amazed at ALL of your's e-mails. What it must take just to write an e-mails. Both of you DO write wonderful long e-mails. I do treasure each  everyone of your e-mails. 
I have trouble keeping upwith this site, 
more power to you to do more than one sit.
Just know ya'll do have a FAN,
Todd in Corpus Christi, TX
--- On Wed, 6/17/09, ladyno...@aol.com ladyno...@aol.com wrote:
From: ladyno...@aol.com ladyno...@aol.comSubject: Re: [TMIC] Transverse Myelitis NetworkTo: heyjude48...@aol.com, tmic-list@eskimo.comDate: Wednesday, June 17, 2009, 12:03 PM

Jude,
First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information.
I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other.
I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression. That won't happen again.-Original Message-From: heyjude48...@aol.comTo: ladyno...@aol.comSent: Wed, Jun 17, 2009 4:26 amSubject: Re: [TMIC] Transverse Myelitis Network







Then what is holding you back? Why don't you simply quit this site and use the other one that you say you prefer? What's the big deal?

Jude


In a message dated 6/15/2009 2:11:29 P.M. Eastern Daylight Time, ladyno...@aol.com writes:

I am also a member of the paraplegic/quadriplegic website that Jim has started. Although I have TM, which left me a quadriplegic, I 

Re: [TMIC] Artist w TM in New York times

[kimr1999]

You know there are some days after working over 8 hours, going to the pool 3 days a week and swimming 1/2 miles I am "DONE" also but NEVER, NEVER be that rude or cold to anyone!! anytime someone wants to ask about the wheel chair, my walker, ect I am nothing short of a chatter box!! lets get the word out! and if on this night he had some type of "high profile" night he shold have been anadvocate for all of us!
-- Original message from T Kanon sseco...@yahoo.com: -- 




Last night was the opening of this artist's exhibit at the Brooklyn Museum and I attended. Two people helped him walk down the aisle and onto the stage. It looked as if his hands were affected too. After the lecture I saw him in his wheelchair being taken to a limo. I went over to him and asked if indeed he had TM. He didn't even look at me and just said I'm done. A guard said he is very tired. I know he was tired but he was also very rude!!!
Tobe 
Brooklyn NY--- On Wed, 6/24/09, Akua a...@artfarm.com wrote:
From: Akua a...@artfarm.comSubject: [TMIC] Artist w TM in New York timesTo: tmic-list@eskimo.comDate: Wednesday, June 24, 2009, 9:42 PM



very interesting article on interesting artist who had...transverse myelitis. and was paralyzed. but no longer is.. regained ability to walk after three years in a wheelchair
http://www.nytimes.com/2009/06/21/arts/design/21sont.html?_r=1scp=1sq=shonibarest=cse

-- 

Re: [TMIC] PAM

[kimr1999]

I agree 
-- Original message from Jan Hargrove jmh1...@sbcglobal.net: -- 




Dan,

Thanks for your thoughts and observations about Pam...I don't know
if you'd read much on list recently, but several have mentioned how much
they miss Pam and her notes and jokesthey've suggested that they
are feeling depressed, etcyour notes help us as I hope they're
helping you!! God bless!!
! TIAD !!! janh


--- On Thu, 6/18/09, montzma...@aol.com montzma...@aol.com wrote:


 I WANT TO SAY I STOP BY HER GRAVE TODAY. WE BURY UP IN THE AIR BECAUSE NEW ORLEANS IS BELOW SEA LEVEL. THE TOMB IS PART UP AND PART BELOW. ROOM FOR OTHERS LIKE ME AND MY SON ETC. HE WILL PROBABLY BE LAID OUT AND BURIED IN WEST VIRGINIA. I CHATED TO HER FOR A WHILE AND TOLD HER I WILL BRING HER SOME FLOWERS SOON. ALL THE FLOWERS ARE GONE NOW. TOLD HER I HAD TO GET BACK TO WORK IN METAIRIE ,LA.

 I DO NOT KNOW IF I MENTIONED THAT MY DAUGHTER IN LAW SAID A NICE BREEZE PICKED UP WHEN WE GOT OUT OF THE LIMO THE DAY WE BURIED PAM. I DID NOT NOTICED. SHE SAID IT STOP WHEN WE WERE ALL FINISHED. IT WAS REAL HOT.MY SON TOLD ME THAT NIGHT THAT HE FELT A HAND FINGERS AGAINST HIS FACE 2 TIMES. I SAID THAT WAS YOUR MOTHER!!!

I ASKED COULD IT BE YOUR SWEAT AND THE COOL BREEZE YOU FELT AND HE SAID NO!!
I HAVE NOT HAD ANY EXPERIENCES YET WITH PAM OR DREAMS? JUST MEMORIES AND I TREASURE THEM.
 WELL JUST WANTED TO PASS THAT ALONG TO HER FRIENDS.

DAN -FOR PAM TIAD!!


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Re: [TMIC] Accessibility Relationships

[kimr1999]

I HATE them and it's hard to get to the sidewalk without someone pushing me
Caster wheels get caught in between the bumps. (this is sooo true)!!!
-- Original message from "Cindy McLeroy" cindymcle...@socal.rr.com: -- 



And Sandy, how do you like the yellow medal plates that are being installed at the curb cutouts? Supposedly they are meant for the blind so that their sticks feel the different surface. I haven't talked to a blind person, a w/c user, or a fellow pushing grocery carts that like the danged things. Caster wheels get caught in between the bumps. This change was a lawsuit that back fired.

Version Amphitheater in Irvine has done an amazing job of raising a portion of the seating above theorchestrasection so folks in wheelchairs can see the stage when the rest of the people below are standing. Love it there.

One of the ADA limits has to do with cost. If the modification is too costly and the building can show that, then they don't have to modify. Also, if the building is historic, they don't have to modify. 

Cindy (sitting home waiting for an otho doctor to get me in with a very severe broken leg...been to emergency already and had a splint)

- Original Message - 

From: parkersw...@aol.com 
To: a...@artfarm.com ; tmic-list@eskimo.com 
Sent: Monday, June 15, 2009 2:44 PM
Subject: Re: [TMIC] Accessibility  Relationships

Add to the list of complaints: Have you noticed that at many hotels, the ADA rooms are furthest from the elevators? And yes, you are lucky if they have ADA rooms on the first floor. Also, the rooms often facethe parking lotandseldom the garden, pool or view? Is this discrimination? I feel it is.

At some commercial stores or restaurants we have had to get Terry through the kitchen or the back door to get to the bathroom. In one instance, we had to go two buildings down! In passing,I mentioned this to a Civil Rights attorney I know and he said, "lawsuit". We haven't pursued that, of course. This friend has filed many suits against large hotel chains, music festivals, etc.,as they are hardly ADA compliant. He himself is disabled and knows first hand the discrimination. I am not saying whatsoever that every place discriminates, not by a long shot. But many business owners are not very aware of the disadvantages that people in wheelchairs are faced with.

That's my tangent for the day. As a wife of a TM'er, if I have timetomorrow, I will try to address the relationship issue. 


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[TMIC] Update on my honey-Jim,

[kimr1999]

From Carol


This is a red letter day. Today is the first day that I can say I really believe the words I've been professing each day. I believe he is going to make it. They put a trach in today and he was breathing good and looking sexy again. I even got a couple kisses and a mouthed I love you before I left. I just about floated home. Now I know we have a long ways to go but he has overcome so many challenges with his TM that I am sure he will beat this too! God Bless all of you for your prayers.We love you. carol and jim. Our family is the glue that has kept me together, we are so blessed.


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Re: [TMIC]

[kimr1999]

AC is set at 74 right now just in the living room we have 1 ceiling fan and 4 floor fans and yep, still warm bedroom has 2 ceiling fans and 3 floor fans and have to sleep on top of the sheets
-- Original message from "Janice" jan...@centurytel.net: --  

Kim, what do you have your thermostat set at in summer?We keep ours at 71 degrees and I have ceiling fans in every room. I really seem to need to
 have to have air movement as much as cool air. Janice

- Original Message - 
From: kimr1...@bellsouth.net 
To: bradebi ; transverse myelitis ; Janice 
Sent: Friday, June 12, 2009 9:32 PM
Subject: Re: [TMIC]


I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist.
Kim
-- Original message from "bradebi" brad...@gmail.com: -- 














    

Hi Janice
I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts..my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight.
In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot...
Debi
TM spastic paraplegic T4 incomplete
South Lake Tahoe Ca.






From: Janice

Date: 6/11/2009 6:41:35 PM
To: transverse myelitis
Subject: [TMIC]

This is Janice,

I have 2 questions:

1.With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some
of you hada problem with the cold last winter, but does your body change in summer and you get hit with being hot instead
of cold? I really have a problem with heat - especially with humidity. Iget hot,then weak. Not good.

2. Several of you have mentioned the tight "band" around your body. I am not sure this band is in the same place for
everyone. Also, has there been any change in the band with those of you who have had TM for a long time? 

Re: [TMIC]

[kimr1999]

yes seems so... yesterday was burning up... went to pool after work then was hot all night
need to go to the pool for weight, blood pressure issues but later the heat is terrible
-- Original message from "Janice" jan...@centurytel.net: --  

 How long does the hot sensation last? Is it only after exertion? Janice

- Original Message - 
From: kimr1...@bellsouth.net 
To: bradebi ; transverse myelitis ; Janice 
Sent: Monday, June 15, 2009 8:40 PM
Subject: Re: [TMIC]


OK, I am with you there!!! Getting ready to turn 50 in two weeks.! now everynight sitting with AC on, ceiling fan going and two room fans blowing on me and just sweating bricks!! so now trying to figure out does it have something to do with TM or menopause 


-- Original message from "bradebi" brad...@gmail.com: -- 










I would be more like you in temperatures but were I live thereisn't many places with airconditioners...so I have noticed that after 3 o'clock in the afternoon I get hotbut I also have hot flashes at any time too.and I can just be on the computer just like right now and be sweating up a storm...and I soak what ever I am wearingI also turned 50 this year...so my Doctor told me to keep track of what is going on, because there are a lot of things can be happening...I could be pre menopausal.haven't had any improvement from this yet...sorry to say.
Debi




From: Janice
Date: 6/14/2009 8:31:46 PM
To: bradebi; transverse myelitis; kimr1...@bellsouth.net
Subject: Re: [TMIC]

You two seem to be worse than I am! I have found in the winter I choose lighter sweaters than before TM. In the summer,
we keep the air conditioner pretty cool - around 71 with ceiling fans going too. In the winter we keep the heat at around
65 during the day and 60 at nite. All our friends know to wear heavier clothing and grab an afghan when they come over.
I also can be doing basically nothing and all of a sudden I feel a heat coming out from within - hate it. Hope this improves.
Janice

- Original Message - 
From: bradebi 
To: transverse myelitis ; Janice ; kimr1...@bellsouth.net 
Sent: Friday, June 12, 2009 9:45 PM
Subject: Re: [TMIC]










    

Does you sweat burn your skin?...it drives me crazy
Debi



---Original Message---


From: kimr1...@bellsouth.net
Date: 6/12/2009 7:32:22 PM
To: bradebi; transverse myelitis; Janice
Subject: Re: [TMIC]


I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist.
Kim
-- Original message from "bradebi" brad...@gmail.com: -- 














    

Hi Janice
I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts..my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight.
In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot...
Debi
TM spastic paraplegic T4 incomplete
South Lake Tahoe Ca.






From: Janice

Date: 6/11/2009 6:41:35 PM
To: transverse myelitis
Subject: [TMIC]

This is Janice,

I have 2 questions:

1.With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some
of you hada problem with the cold last winter, but does your body change in summer and you get hit with being hot instead
of cold? I really have a problem with heat - especially with humidity. Iget hot,then weak. Not good.

2. Several of you have mentioned the tight "band" around your body. I am not sure this band is in the same place for
everyone. Also, has there been any change in the band with those of you who have had TM for a long time? 

Re: [TMIC]

[kimr1999]

Plan "B" is for me to moce into an IGGLOO!

-- Original message from "Janice" jan...@centurytel.net: --  


 Turn that AC down!!! I see you are definitely into the "air movement" like I am. Sure helps. I also wear a patch on my
 are to help with overheating.. It is clonidine - so far it doesn't work. I need to talk to mydoc to see what plan B is.
 Janice

- Original Message - 
From: kimr1...@bellsouth.net 
To: Janice ; bradebi ; transverse myelitis 
Sent: Tuesday, June 16, 2009 10:04 PM
Subject: Re: [TMIC]


AC is set at 74 right now just in the living room we have 1 ceiling fan and 4 floor fans and yep, still warm bedroom has 2 ceiling fans and 3 floor fans and have to sleep on top of the sheets
-- Original message from "Janice" jan...@centurytel.net: --  

Kim, what do you have your thermostat set at in summer?We keep ours at 71 degrees and I have ceiling fans in every room. I really seem to need to
 have to have air movement as much as cool air. Janice

- Original Message - 
From: kimr1...@bellsouth.net 
To: bradebi ; transverse myelitis ; Janice 
Sent: Friday, June 12, 2009 9:32 PM
Subject: Re: [TMIC]


I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist.
Kim
-- Original message from "bradebi" brad...@gmail.com: -- 














    

Hi Janice
I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts..my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight.
In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot...
Debi
TM spastic paraplegic T4 incomplete
South Lake Tahoe Ca.






From: Janice

Date: 6/11/2009 6:41:35 PM
To: transverse myelitis
Subject: [TMIC]

This is Janice,

I have 2 questions:

1.With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some
of you hada problem with the cold last winter, but does your body change in summer and you get hit with being hot instead
of cold? I really have a problem with heat - especially with humidity. Iget hot,then weak. Not good.

2. Several of you have mentioned the tight "band" around your body. I am not sure this band is in the same place for
everyone. Also, has there been any change in the band with those of you who have had TM for a long time? 

Re: [TMIC]

[kimr1999]

no but will give it a try
-- Original message from "Janice" jan...@centurytel.net: --  

 Have you tried sleeping with cold packs under your neck? Might help Janice

- Original Message - 
From: kimr1...@bellsouth.net 
To: Janice ; bradebi ; transverse myelitis 
Sent: Tuesday, June 16, 2009 10:06 PM
Subject: Re: [TMIC]


yes seems so... yesterday was burning up... went to pool after work then was hot all night
need to go to the pool for weight, blood pressure issues but later the heat is terrible
-- Original message from "Janice" jan...@centurytel.net: --  

 How long does the hot sensation last? Is it only after exertion? Janice

- Original Message - 
From: kimr1...@bellsouth.net 
To: bradebi ; transverse myelitis ; Janice 
Sent: Monday, June 15, 2009 8:40 PM
Subject: Re: [TMIC]


OK, I am with you there!!! Getting ready to turn 50 in two weeks.! now everynight sitting with AC on, ceiling fan going and two room fans blowing on me and just sweating bricks!! so now trying to figure out does it have something to do with TM or menopause 


-- Original message from "bradebi" brad...@gmail.com: -- 










I would be more like you in temperatures but were I live thereisn't many places with airconditioners...so I have noticed that after 3 o'clock in the afternoon I get hotbut I also have hot flashes at any time too.and I can just be on the computer just like right now and be sweating up a storm...and I soak what ever I am wearingI also turned 50 this year...so my Doctor told me to keep track of what is going on, because there are a lot of things can be happening...I could be pre menopausal.haven't had any improvement from this yet...sorry to say.
Debi




From: Janice
Date: 6/14/2009 8:31:46 PM
To: bradebi; transverse myelitis; kimr1...@bellsouth.net
Subject: Re: [TMIC]

You two seem to be worse than I am! I have found in the winter I choose lighter sweaters than before TM. In the summer,
we keep the air conditioner pretty cool - around 71 with ceiling fans going too. In the winter we keep the heat at around
65 during the day and 60 at nite. All our friends know to wear heavier clothing and grab an afghan when they come over.
I also can be doing basically nothing and all of a sudden I feel a heat coming out from within - hate it. Hope this improves.
Janice

- Original Message - 
From: bradebi 
To: transverse myelitis ; Janice ; kimr1...@bellsouth.net 
Sent: Friday, June 12, 2009 9:45 PM
Subject: Re: [TMIC]










    

Does you sweat burn your skin?...it drives me crazy
Debi



---Original Message---


From: kimr1...@bellsouth.net
Date: 6/12/2009 7:32:22 PM
To: bradebi; transverse myelitis; Janice
Subject: Re: [TMIC]


I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist.
Kim
-- Original message from "bradebi" brad...@gmail.com: -- 














    

Hi Janice
I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts..my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight.
In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot...
Debi
TM spastic paraplegic T4 incomplete
South Lake Tahoe Ca.






From: Janice

Date: 6/11/2009 6:41:35 PM
To: transverse myelitis
Subject: [TMIC]

This is Janice,

I have 2 questions:

1.With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some
of you hada problem with the cold last winter, but does your body change in summer and you get hit with being hot instead
of cold? I really have a problem with heat - especially with humidity. Iget hot,then weak. Not good.

2. Several of you have mentioned the tight "band" around your body. I am not sure this band is in the same place for
everyone. Also, has there been any change in the band with those of you who have had TM for a long time? 

Re: [TMIC]

[kimr1999]

OK, I am with you there!!! Getting ready to turn 50 in two weeks.! now everynight sitting with AC on, ceiling fan going and two room fans blowing on me and just sweating bricks!! so now trying to figure out does it have something to do with TM or menopause 


-- Original message from "bradebi" brad...@gmail.com: -- 










I would be more like you in temperatures but were I live thereisn't many places with airconditioners...so I have noticed that after 3 o'clock in the afternoon I get hotbut I also have hot flashes at any time too.and I can just be on the computer just like right now and be sweating up a storm...and I soak what ever I am wearingI also turned 50 this year...so my Doctor told me to keep track of what is going on, because there are a lot of things can be happening...I could be pre menopausal.haven't had any improvement from this yet...sorry to say.
Debi




From: Janice
Date: 6/14/2009 8:31:46 PM
To: bradebi; transverse myelitis; kimr1...@bellsouth.net
Subject: Re: [TMIC]

You two seem to be worse than I am! I have found in the winter I choose lighter sweaters than before TM. In the summer,
we keep the air conditioner pretty cool - around 71 with ceiling fans going too. In the winter we keep the heat at around
65 during the day and 60 at nite. All our friends know to wear heavier clothing and grab an afghan when they come over.
I also can be doing basically nothing and all of a sudden I feel a heat coming out from within - hate it. Hope this improves.
Janice

- Original Message - 
From: bradebi 
To: transverse myelitis ; Janice ; kimr1...@bellsouth.net 
Sent: Friday, June 12, 2009 9:45 PM
Subject: Re: [TMIC]










    

Does you sweat burn your skin?...it drives me crazy
Debi



---Original Message---


From: kimr1...@bellsouth.net
Date: 6/12/2009 7:32:22 PM
To: bradebi; transverse myelitis; Janice
Subject: Re: [TMIC]


I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist.
Kim
-- Original message from "bradebi" brad...@gmail.com: -- 














    

Hi Janice
I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts..my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight.
In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot...
Debi
TM spastic paraplegic T4 incomplete
South Lake Tahoe Ca.






From: Janice

Date: 6/11/2009 6:41:35 PM
To: transverse myelitis
Subject: [TMIC]

This is Janice,

I have 2 questions:

1.With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some
of you hada problem with the cold last winter, but does your body change in summer and you get hit with being hot instead
of cold? I really have a problem with heat - especially with humidity. Iget hot,then weak. Not good.

2. Several of you have mentioned the tight "band" around your body. I am not sure this band is in the same place for
everyone. Also, has there been any change in the band with those of you who have had TM for a long time? 

Re: [TMIC] Transverse Myelitis Network

[kimr1999]

AMEN!
-- Original message from Jim Lubin jlu...@eskimo.com: -- Well, it was answered before I was even out of bed. :-)The only thing I have to add is that if anyone has an awareness group let me know and I can add it to the page at http://www.myelitis.org/support.htmAt 09:22 AM 6/15/2009, Deborah Nord Capen wrote:
I have to respectfully add to Grace's comment below. She is absolutely correct when she states that the groups are formed to spread awareness of TM, ADEM, NMO and the other neuroimmunologic disorders. The TMA was not formed to hold a monopoly on support groups. It was formed as a non-profit organization to enable us to raise funding for research into causes and cures, form a Medical Advisory Board of excellent physicians who support our cause, raise awareness around the world, and help facilitate emotional support for those who have these disorders. Without the ability to raise money which is tax deductible for our contributors, none of this would have happened. Without the non-profit status, we can not request grants or funding from the NIH, NINDS or other groups for research support.We applaud all those individuals who start the support groups both online and in their geographic areas, as without their help, transverse myelitis does not have a "face". Pretty much all of these groups have been started by TMA members. Jim Lubin was our pioneer into this medium. He started the first Internet support group when he became a vent-dependent quadriplegic from TM. He also started many other support groups, such as the vent-dependent quad list. We will never have enough support groups. I myself have joined several of these groups just to see the sharing and emotional support that goes on. It is very heart-warming to see this happening.I think that having all of the support groups makes us more noticeable to the news media and the talk shows. I don't think that any of these shows ever mentioned TM prior to 1997. This awareness has happened because those of us with TM are not just sitting quietly and let it consume our lives. We are doing something about it!Also, in my opinion, I don't think that there is any bickering going on about this topic; I think it is just productive conversation and helps to make all the newer subscribers aware that these lists are all out there for their information, and let's not forget our caregivers. They need support groups too!Take care,Debbie CapenSecretaryThe Transverse Myelitis Association

- Original Message - 
From: Grace M. 
To: jharpe...@aol.com 
Cc: rp...@neillsupply.com ; jlu...@makoa.org ; tmic-list@eskimo.com 
Sent: Monday, June 15, 2009 9:00 AM
Subject: Re: [TMIC] Transverse Myelitis Network

The Transverse Myelitis Network is another great way for patients to communicate and compare notes. Many of the TMIC members participate there. Our own Marieke is one of the administrators. I advocate for NMO, and work with Sandy Siegel and the TMA crew, and I also have my own site, of which Mr. Siegel is extremely supportive. It's all about spreading awareness of issues like TM, and other causes of non traumatic SCI. There is enough room for everyone an no need to quibble. 


Respectfully, 


Grace


Jim Lubin jlu...@eskimo.comhttp://makoa.org/jim disAbility Resources: http://www.makoa.org

Re: [TMIC] Relationships

[kimr1999]

Ok not the same issue but here one of my gripes

I am in a wheel chair on a business trip in LA, the hotel puts me on the 16th floor in a ‘wheel char accessible room” ok now tell me how am I to get to the ground floor if something were to happen? Can’t use the elevator, hum am I supposed to fly? Went to complain to manager and he looked at me like I just grew a third eye!! Then had the nerve to tell me “Oh if something were to happen, we would send someone to come get you” I just laughed at him… and demanded to be put on the ground floor, room was difficult to get around in but felt safer. To date hotel has yet to make any kind of change in “wheel chair accessible rooms” I wrote a letter to the corporate office but never heard back from them.

Kim
-- Original message from Kevin Wolfthal wolft...@optonline.net: --   Akua,   Yes, there are other people with disabilities in my building. They are  afraid  to fight for their rights, and I don't have the energy to organize  them. I have  gotten small things done (curb cut) by emailing a state Senator who  contacted the Fair  Housing Association for my state.  As the population ages, I think the ADA laws need to be re-examined or we  are going to be stepped on even more.  Have you contacted local TV stations? Sometimes they have advocates that  help people.   Best wishes,  Kevin   Akua wrote:   Kevin, I remember your tales of struggle with your condo. I was in exile at the time, waiting for my home to be rehabbed.   Now I'm home-- private house-- and everytime I want to invoke the ADA,   I'm told it doesn't apply--- from the ramps that don't meet   ADA specs to being able to be dropped off in front   of my house where there is one concrete break in the grassy   median. My house is on a corner.., neither my neighbors across the street   nor next door to me park in front of my house. It's the illogic that gets me... there is plenty of room. okay. so why   can't I reserve the space in front of my house, which i starved and   suffered   to retain and continue to pay taxes on for the handicapped in this   case me? There are signs warning of Children at play and Deaf children, why is   my request resisted? Are there other handicapped folks in your condo? Can you get them   to ask? I wrote well crafted letter after letter to the newspapers about lack   of paratransit.   My drummer wrote a rant about not being able to get a bus to see me   ( he can walk and could, but it would be extremely arduous) and they   published it! Sometime, I guess they need to hear more than one voice,   no matter how clear and lucid that one voice is. Thanks for sharing.   Akua   Akua, The laws regarding handicapped parking don't go far enough imo, and   there should be state inspections of buidings like mine, (a high-rise   condo complex),   to make sure they are meeting code. There is exactly ONE handicapped   parking   space on my street for approx. 200 condominiums. I have learned that   there should   be at least THREE spaces, still not that many. I have been forced to   park a block   away, and as a result have not been able to access my car for a very   long time. I used   to be able to walk to my car with a cane, now it's too far, and I can   only get to   it with a power wheelchair, which I can't get in my car. It sounds like you live in a private home? It seems the ADA laws do   little for private   residences than public buidings, but there shouldn't be people   blocking your access.   That's just wrong. Kevin   Akua wrote:   Ah Kevin: curb cuts After a year and half of lettert writing and countless calls, the   city manager and a cop are meeting with me to review my request for   a handicapped parking sign in front of my house. I have a curb cut right in front of my house, but some idiots park   there, blocking it. Despite the fact that it is in front of my   house and my ramp. I was initially refused the sign because   I was told there are LOTS of places to park in my single-family home   neighborhood. I said that's my point! There are lots of other places for able   bodied people to PARK( like their own   homes and driveways) and I need access to my house. I was told that   handicapped parking signs are   not for homesarhhh but they're coming to meet with me to   understand what it is I am saying. Akua Akua, I am sorry that you are going through these difficulties. I had to get my state involved to get a wheelchair curb cut   put in front of my condo complex. The building resents me   because it cost money, even though they were breaking the law. Kevin  

Re: [TMIC] Relationships

[kimr1999]

Karma, Karma, Karma gets um back!
-- Original message from "Janice" jan...@centurytel.net: --  You are right. Those of us who have not had to fight society and family  are extremely fortunate. Couldn't help but notice  that the people causing you two so much grief ended up with worse problems.  Wonder where that came from?! Janice   - Original Message -  From: "Kevin Wolfthal"  To: ;  Sent: Saturday, June 13, 2009 6:05 AM  Subject: Re: [TMIC] Relationships   When TM hit me, I kept working until I no longer could. In fact I pushed   myself even harder than before..probably a mistake. My boss said once,   "what's with all the sick", never asking what was my DX. He subsequently   found out what "sick" was when he lost his only two sons, one to cancer   and the other to a heart attack. Instead of making him more   understanding,   he treated me even worse. He was eventually pushed out, but his   replacement   wasn't much better. After I left, they found out just how much work i was   doing, even with TM, and it took them a year to replace me. They also   cheated me out of my private disability benefit. Now there are many   layoffs there   because of the economy. What goes around comes around. But I miss   working and loved my job. I'm glad for you that you are happy and still able to work. Kevin   rj_ran...@yahoo.com wrote:   Been there. I was diagnosed with ms. Year later tm. I was engaged when tm   hit. The future mom n law became the embodiment of hell. I still hate   her. So didn't marry. Work was a problem. After I lost my bladder I had   to self cath only problem I teach and the bosses made us call to leave   the room. I had to explain my situation and he cut me off in anger and   said he didn't wanna hear it. It was hard enough to build up guts to tell   him and for him to walk out in that manner was really upsetting. But a   year later his wife had a heart attack and his second in charge, who also   treated me badly, had a stroke and is in worse shape than me. I   transfered and am much happier. --Original Message--   From: Kevin Wolfthal   To: tmic-list@eskimo.com   Subject: Re: [TMIC] Relationships   Sent: Jun 12, 2009 8:06 PM Never having been married, but always wanting a family, TM took away even   my desire for that. My relationships, most "friends" disappeared. Relatives act like TM is   contagious. Only my Mom   has stayed constant. I help her the best I can, (she'll be 86 next   week), and this has been a scary   year. My Mom collapsed several months ago. I somehow got to her and   gave her CPR, and she   started to breathe again. She then spent 6 weeks in a nursing home. The   rest of my family just   wants to see both of us in a nursing home. Those of you who have had family and friends stick by you, consider   yourself fortunate. Kevin   Todd Tarno wrote: TM has made Billy  mines relationship stronger.   I did ask him when TM hit ( when we knew it was going to be a long road   to recovery ) and we had only been together for 5 years  he hadn't   signed up for this, " Do you want to stay together or not ? " He was so   bad at me for even asking the question in the first place, but I knew   then that he was in for the long road to recovery too.   I had started a cross stitch of our anniversary date, it was half done   when TM hit, but that was the first thing I finished in between naps.   lol   Now it's been 7 years with TM  we will have been together these Nov.   will be 12 years.   May all of our relationships are stronger today,   Todd in CC, TX   --- On *Thu, 6/11/09, Janice //* wrote:   From: Janice   Subject: [TMIC]   To: "transverse myelitis"   Date: Thursday, June 11, 2009, 10:38 PM It's Janice again. I have something else that I have wondered   about and have decided to just ask and see what is out there.   Do you feel that having TM has improved or destroyed the   love/happiness in your marriage/relationship with your partner? Sent from my Verizon Wireless BlackBerry   

Re: [TMIC]

[kimr1999]

I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist.
Kim
-- Original message from "bradebi" brad...@gmail.com: -- 














    

Hi Janice
I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts..my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight.
In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot...
Debi
TM spastic paraplegic T4 incomplete
South Lake Tahoe Ca.






From: Janice

Date: 6/11/2009 6:41:35 PM
To: transverse myelitis
Subject: [TMIC]

This is Janice,

I have 2 questions:

1.With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some
of you hada problem with the cold last winter, but does your body change in summer and you get hit with being hot instead
of cold? I really have a problem with heat - especially with humidity. Iget hot,then weak. Not good.

2. Several of you have mentioned the tight "band" around your body. I am not sure this band is in the same place for
everyone. Also, has there been any change in the band with those of you who have had TM for a long time? 

Re: [TMIC]

[kimr1999]

No it does not but anoying as heck... only seems to happen at night, banding is worse at night and feet burning.
-- Original message from "bradebi" brad...@gmail.com: -- 














    

Does you sweat burn your skin?...it drives me crazy
Debi



---Original Message---


From: kimr1...@bellsouth.net
Date: 6/12/2009 7:32:22 PM
To: bradebi; transverse myelitis; Janice
Subject: Re: [TMIC]


I am sitting here with the AC going, ceiling fan and two fans on me and sweating! feet feel like there on fire(when I put lotion on them it melts and turns to water) no kidding. banding is on right side rib cage to waist.
Kim
-- Original message from "bradebi" brad...@gmail.com: -- 














    

Hi Janice
I get very hot when it is only in the 70 or 80's for no reason I can just be on the computer or watching TV and I will get real hot so much that I sweat a lot..(I soak my blouse) but I only sweat on my face neck and breasts..my lesion is at nipple level T4 my banding is where my bra snaps...so it feels like my bra is way to tight.
In the cold weather I get more spastic and tight it hurts to bend knees and ankles. I still have the banding in winter too...and if my husband puts the furnace up to high I will over heat...I love to go out in the snow with just what I have on and bear foot and watch all the steam come off me..its a riot...
Debi
TM spastic paraplegic T4 incomplete
South Lake Tahoe Ca.






From: Janice

Date: 6/11/2009 6:41:35 PM
To: transverse myelitis
Subject: [TMIC]

This is Janice,

I have 2 questions:

1.With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some
of you hada problem with the cold last winter, but does your body change in summer and you get hit with being hot instead
of cold? I really have a problem with heat - especially with humidity. Iget hot,then weak. Not good.

2. Several of you have mentioned the tight "band" around your body. I am not sure this band is in the same place for
everyone. Also, has there been any change in the band with those of you who have had TM for a long time? 

Re: [TMIC] I am not receiving mail

[kimr1999]

hey Jenna, just got this Thrusday AM!
-- Original message from Jenna jkste...@yahoo.com: -- 


Catherine,Super quiet night?? Or maybe, yahoo, is having problems, I was wondering the same thing?? I sent and email to my sister and she replied, I live in the same house with her, and I haven't gotten the reply and that was 3 hours ago...it just might be a yahoo problem?? I also sent a few emails to Kimrand nothing back from her and I know she is online...
Jenna




From: Catherine camoa...@yahoo.comTo: Transverse Mylitis Group tmic-list@eskimo.comSent: Wednesday, June 10, 2009 11:12:39 PMSubject: [TMIC] I am not receiving mail

























Can anyone tell me what might be going on?Catherine

Re: [TMIC]

[kimr1999]

1) yes heat is worse in the summer right now sittng my two fans and AC is on and still feel like sweating more than I should be

2) in the 4 years I have had TM bandinmg pain has never gotten better. I am lucky that it's ohly on the right side at my waist. I have to wear pants and shorts with elastic and they are pulled up above the banding pain area. somedays pain is unbearable some days just don't notice it
-- Original message from "Janice" jan...@centurytel.net: -- 



This is Janice,

I have 2 questions:

1.With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some
of you hada problem with the cold last winter, but does your body change in summer and you get hit with being hot instead
of cold? I really have a problem with heat - especially with humidity. Iget hot,then weak. Not good.

2. Several of you have mentioned the tight "band" around your body. I am not sure this band is in the same place for
everyone. Also, has there been any change in the band with those of you who have had TM for a long time? 

Re: [TMIC] I looked up Pam's obit for us

[kimr1999]

Thank you for posting this information. Just and FYI, The funeal home has a guest book set up in Pam's name. 
-- Original message from alle...@aol.com: -- 







E-mail
Pamela Montz 
MONTZ Pamela Montz at New Orleans, LA on Saturday, June 6, 2009. Beloved wife of Daniel P. Montz, Jr. Mother of Sean P. Montz. Mother-in-law of Bonnie Meyers Montz. Daughter of Richard W. Rholdon, Sr. and the late Janis Rholdon. Also survived by seven brothers and sisters, 4 grandchildren, 5 nieces and nephews and 1 great niece. Relatives and friends of the family are invited to attend the Funeral Service at Tharp-Sontheimer-Tharp, 1600 N. Causeway Blvd. at 43rd St., on Wednesday, June 10, 2009 at 12:00 noon. Interment in Greenwood Cemetery. Visitation on Wednesday, June 10, 2009 from 9:00 a.m. until 12:00 noon. For information, call 835-2341. 

Published in The Times-Picayune on 6/9/2009Continue to death notice 


Ways to help

View/Sign Guest Book 
Create Memorial Website 
Send Flowers 
Donate to Charity 
Funeral Home Details 
hosted by Legacy.com 


A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

Re: [TMIC] PC revenge - spelling and the spell check poem

[kimr1999]

THAT IS GREAT

-- Original message from "Sandy Heidel" skhei...@charter.net: -- 








Every year or so I have to dig this up. 
I have to read it out loud! 
I love my spell checker but he likes to play tricks on me.
Sandy in chilly and soggy Wisconsin

CANDIDATE FOR A PULLET SURPRISE 
I have a spelling checker,It came with my PC.It plane lee marks four my revueMiss steaks aye can knot sea. 
Eye ran this poem threw it,Your sure reel glad two no.Its vary polished in it's weigh.My checker tolled me sew. 
A checker is a bless sing,It freeze yew lodes of thyme.It helps me right awl stiles two reed,And aides me when eye rime. 
Each frays come posed up on my screenEye trussed too bee a joule.The checker pours o'er every wordTo cheque sum spelling rule. 
Bee fore a veiling checker'sHour spelling mite decline,And if we're lacks oar have a laps,We wood bee maid too wine. 
Butt now bee cause my spellingIs checked with such grate flare,Their are know fault's with in my cite,Of nun eye am a wear. 
Now spelling does knot phase me,It does knot bring a tier.My pay purrs awl due glad denWith wrapped word's fare as hear. 
To rite with care is quite a feetOf witch won should bee proud,And wee mussed dew the best wee can,Sew flaw's are knot aloud. 
Sow ewe can sea why aye dew praysSuch soft wear four pea seas,And why eye brake in two averseBuy righting want too pleas. 

http://www.geocities.com/Athens/8462/speller.htm

Re: [TMIC] PAM MY VERY LOVING WIFE

[kimr1999]

For out Pam and all that need comfort now


Through every trial and moment of pain, we stand together to help one another.Sometimes the hand of a stranger comes along and lifts up our hearts..Our responsibility is to continue that selfless act of love and pass on the comfort.
Blessed are those who mourn for they shall be comforted.~ Mathew 5:4
-- Original message from montzma...@aol.com: -- 

Thank you all so very, very, very much for writing back to montzma...@aol.com. I am sitting down reading all the wonderful mail about my wife Pam. I can,t stop crying!!! This has met so much to me. I do not think the friends of Pam Montz will ever know how much. I am a very simple man who never asked for much. My whole life has been Pam.I waited on her as much as i could and now this is gone,taken from me. Pam do you need a bottle water or some crushed ice and coke. You want me to brink you your pill box. What lean cuzine do you want for me to warn for you. I want to walmart and found this great buy on a nightgown . The dollar store guess what i found for you. Some nice coke glasses to enjoy your beverage of the day.It's Saturday Pam you want your shrimp and lobster sauce from the local Chinese restaurant? PAM YOU MUST READ YOUR FORTUNE COOKIE. .i feel so bad i let her down. She did not get the help she needed at the hospital as usual.We all thought Pam going into the hospital was a routine, she lose the strength in her legs and within 2 weeks be back up walking ok and doing home therapy.Yes she always lived in pain some days better than others. She was smart and knew her meds well. The wrong doctors were on call not her usual.I think, HELL I do not know what to think anymoreI hashed it out over and over. Thank all of you!!
Pam said if things get real bad on the bank account and we have tough times, One thing you will never take away from me is my computer She loved her TM friends writing.to her and writing back to them. I would come home from work sometimes and the door was locked having a arm full of stuff to bring in. The lights were off in the front room which i hated. I yell are you on the puter again? That was Pam.

I do not know anyone on here but I PRAISE GOD YOU WERE THERE FOR HER!!!
GOD BLESS ALL OF YOU!
I KNOW PAM WOULD WANT ME TO SAY
TIAD
I LOVE YOU PAM, I LOVE YOU BABY WILL ALL MY HEART
IT WILL BE IMPOSSIBLE WITHOUT YOU--DAN


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Re: [TMIC] Occupations

[kimr1999]

I read all the post and stories on TM but rarely add my input, as I was reading other post on this subject I do not feel so alone. 
I was working in Atlanta as a warehouse manager in over 200,000 sq ft building, walking end to end all day when I got TM in 04 and now walker at home wheel chair in public. I was on a business trip to Texas when it happened. Company was very supportive at the on set, flew husband out to assist and bring me home once I got out of the hospital and rehab hospital. When I went back to work a month after getting out of rehab they brought me down for a “trial run’ to see if I would have any problems with accessibility and office arrangements. Building was just fine and they even built me an area in a space office to lie down and rest if needed during the day. Then company moved to another facility 20 miles further away, job hours got longer, and more physically demanding. Hours went from 8 a day to 12 and no more rest breaks. Company ended up closing facility last year and I was able to get “office job” with another company. Only problem with new company is they were not there from the beginning of TM and most days they don’t understand just getting up, dressing and getting to work wears me out, the fatigue, constant pain I am in. Was hurting one day, could not get conformable, legs stun, feet burned like they were on fire and all boss could say was “Oh poor baby” I was hurt and disappointed that someone would say that! Old job would have told me to go lie down, put feet up for about 20 minutes then come back once out to warehouse once I was feeling better. So far have been able to put in my 8 hours a day and go to pool 3 days a week. Now I try to rest as much as possible on the weekends so I can get up and do it all over again. 

Kim
-- Original message from "Janice" jan...@centurytel.net: -- 



Hi Guys!

I have been curious about something for a while and since things have kind of slowed down, want to ask you all what you did
before TM hit and if you were able to go back to it or if you are doing something new. I am including even those who just read these emails and don't usually
respond. I would like to hear from everybody and would think all of us would be interested. I will start:

I was a school nurse's secretary/assistant in a large high school for 19 years. I absolutely loved it - everyday was different, as
you can imagine working with high schoolers! Our school nurse was gone a lot to other schools we were responsible for, so
I was left alone quite a bit and handled many different situations. I was well trained for this and it was great.

Janice

Re: [TMIC] Pam. Montz

[kimr1999]

Thoughts and prayers are with her family

To know we will no longer see emails signed off as..

 ! TIAD PAM !
Pam was a very special, upbeat positive person, remember her in our hearts!

Kim/atlanta
-- Original message from jharpe...@aol.com: -- 

I am totally stunned. Does anyone know what happened?

Barbara H.
http://barbarah.wordpress.com/


In a message dated 6/7/2009 9:00:18 P.M. Eastern Daylight Time, alle...@aol.com writes:

I have some sad news. I had written to Pam Thurs (I think) and received this reply today. I don't know anything other than this but let's keep her family in prayer..Ella

-Original Message-From: montzma...@aol.comTo: elbanks...@aol.comSent: Sun, 7 Jun 2009 10:56 amSubject: Re: Hi Pam

pam passed away sat. night at touro hospital


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RE: [TMIC] my swimming escapade

[kimr1999]

Rob also let me know about the MP3 unerwater player and I LOVE MINE!! I got mine from from Amazon and have nothing but good things to say about swimming with music!
-- Original message from "Robert Pall" rp...@neillsupply.com: -- 



Let me know if you are interested in an underwater MP3 player. I have one and can swim for an hour listening to my doo wop musicI love it...and it is so easy to work that you can be computer illiterate abnd still have no problems. You will be surprised how much easier the workout is when you are listening to music!

Rob in New Jersey


From: Amanda Diskey [mailto:adis...@yahoo.com] Sent: Wednesday, May 27, 2009 5:41 PMTo: tmic-list@eskimo.comSubject: [TMIC] my swimming escapade

























Hey everyone! Either I got kicked off the list or there just isn't much happening on here! Well it is getting warm out, and it is time to get out for some fresh air and sunshine! I have been swimming two times now and it was awesome, it is the first time I have been "in" the water in over 9 months. I only get showers not baths, it felt so strange when they lowered me into the water! I had to have a floatie because apparently I cannot swim as easily as I thought! My legs want to float up when I want them down, and they want to go down when I want them to float. Go figureBut it was nice to feel like I was almost standing there, the water was nice and warm, and I was able to float on my back all by myself with no floatie!! My PT was excitedMe tooI am definitely want to find a heated pool to use, I just gotta get stronger arms to do this stuff! Can't wait to do it again. Hope all is well out there in cyber land and everyone is having a great day!

amanda

Re: [TMIC] DEPRESSION,READ MY STORY.long winded

[kimr1999]

This seems like a good time to send this..

Kim, TM, 10-04 , T-10

Through every trial and moment of pain, we stand together to help one another.Sometimes the hand of a stranger comes along and lifts up our hearts..Our responsibility is to continue that selfless act of love and pass on the comfort.
Blessed are those who mourn for they shall be comforted.
-- Original message from jeff bernier jeffsmokeeater@yahoo.com: -- 




THIS IS MEANT TO BE A LITTLE ADVICE FOR ANYONE ON THE LIST THAT IS OR HAS,SUFFERED FROM DEPRESSION AND REALLY AIMED AT THE NEWER DX MEMBERS HERE,MOST OF US THAT HAVE BEEN HERE AWHILE CAN ATTEST TO MY STORY AND WE ALL HAVE OUR OWN.
IT WAS A BEAUTIFULL SUNNY SAT MORNING FEB 5 2000,I WAS A FIREFIGHTER/PARAMEDIC AT A STRUCTURE FIRE,I HAD MY CAREER GOING INTO FULL SWING AND WAS LOVING WHAT I WAS DOING,I FELT AS THOUGH I FOUND MY TRUE CALLING.AT 30 YEARS OLD WITH 12 YEARS ON THE JOB ALREADY,I HAD 4 BEAUTIFULL CHILDREN AND A WIFE THATS I LOVED DEARLY,EVERYTHING IN MY LIFE WAS WHERE I WANTED IT.THEN CAME THE FALL,I WAS ENTERING A BUILDING AND SLIPPED AND FELL ON ONE STEP WITH ABOUT 70 LBS OF GEAR ON AND WENT BACKWARDS LANDING HARD ON MY HEELS AND COLLAPSING IN THE SNOW AND HAVING EVERYTHING TURN WHITE FROM MY FACE BEING BURRIED IN THE SNOW.
I FELT A SHOCKWAVE GO UP MY SPINAL CHORD AND IT SCARED THE HELL OUT OF ME,BECAUSE I HAD HEARD OF THIS HAPPENING TO OTHER PEOPLE,WITH IN WEEKS I WAS IN A WHEELCHAIR AND DX WITH TRANSVERSE MYELITIS AND GETTING NO ANSWERS,IVE LEARNED THE FIRST YEAR IS TOTAL CONFUSION AND SPENT HOPING YOULL WALK AGAIN,THE SECOND YEAR IS THE WORST BECAUSE REALITY SETS IN AND YOU START TO REALISE THERES NO TURNING BACK AND YOU STRUGGLE TO ACCEPT WHAT HAS HAPPENED TO YOU,THATS WHEN I FOUND THIS LIST AND REALISED THAT HEY! THERE IS OTHERS OUT THERE WITH SIMILAR CONDITIONS,I CREDIT THE MEMBERS OF THIS LIST AND MY CHILDREN FOR PREVENTING ME FROM TAKING MY LIFE AND I KNOW THERES MEMBERS ON HERE THAT HAVE THOUGHT ABOUT IT,ITS THE HUMAN RESPONSE WHEN YOUVE HIT ROCK BOTTOM.ITS NOT WORTH IT,THERES SO MUCH TO LIVE FOR AND LIGHT AT THE END OF THE TUNNEL.
WELL HERE IS THE TWIST TO THIS STORY,I WAS DX WITH MS IN JUNE 2005 AND THIS BROUGHT A WHOLE NEW SET OF FEELINGS AND CONFUSION AND AGAIN I CAME BACK TO THIS LIST.
LAST MOTHERSDAY MYSELF AND MY WIFE OF 16 YEARS SEPERATED AND MY HEART WAS CRUSHED,I NEVER HAD THE TIME TO DEAL WITH MY OWN HURT AND INTERNAL STRUGGLE BECAUSE I WAS DEALING WITH MY KIDS PAIN,THE HOUSE I WAS LIVING IN WAS PUT UP FOR SALE BY MY OWN FAMILY AND I WAS GIVEN 3 MONTHS TO FIND A PLACE TO LIVE 2 WEEKS AFTER THE SPLIT UP.IN OCTOBER IT FINALLY HIT ME FULL FORCE WHAT HAD HAPPENED AND I WENT BACK INTO A DEEP STATE OF DEPRESSION AND COULDNT FIND AWAY TO CLAW MYSELF OUT,I LOST 65 LBS AND MADE 13 TRIPS TO THE HOSPTIAL,BUT I BEAT IT AND THIS IS MY POINT.IF YOUR AT ROCK BOTTOM THERES ONLY ONE WAY TO GO AND THATS UP,I DUG MYSELF OUT TWICE WITH NO MEDICATION AND NO SHRINK,THERE IS SUNLIGHT AT THE TOP OF THE BARREL YOU JUST NEED TO FIND A WAY TO GET TO IT.YOU ARE IMPORTANT TO SO MANY PEOPLE IN YOUR LIFE AND ITS ABOUT BEING TRUE YOURSELF AND THOSE THAT LOVE YOU.
AS FOR ME IM OK AND GOING DAY BY DAY,IM STILL BEST FRIENDS WITH MY WIFE AND I WOULD DO ANYTHING FOR HER,OUR KIDS ARE DOING GOOD AND COPING,I HAVE DAYS WHEN MEMORIES HIT,BUT IVE LEARNED METHODS TO COPE WITH IT.IF ANYONE ON THIS LIST NEEDS A VOICE OR SOMONE TO CHAT WITH.PLEASE CONTACT ME AT dsrtstr...@yahoo.com .DIPLOMACY DOES NOTWORK WHEN DEALING WITHNUT'S HELL BENT ONDESTROYING US.

RE: [TMIC] herbs

[kimr1999]

also remember herbs are nhot tested or regulated you don't know what your getting
-- Original message from "Patricia Cooley" patticoo...@wi.rr.com: -- 






AMANDA:

SHORTLY AFTER I WAS DIAGNOISED WITH TM LAST JUNE, I FOUND A WEBSITE THAT OFFERED A HERB FOR PEOPLE WITH MYELITIS, AND OF COURSE I ORDERED A 3 MONTH’S WORTH RIGHT AWAY. IT DID TAKE ALMOST 6 WEEKS BEFORE I RECEIVED THEM. THERE WERE 3 BOTTLES, ONE FOR EACH MONTH. I STARTED TAKING THEM RIGHT AWAY. I WAS ALMOST THROUGH WITH THE SECOND BOTTLE. I REALLY DIDN’T NOTICE ANY CHANGE OR IMPROVEMENT. BUT, IN THE MEANTIME I WAS SEEING A DOC FOR SCOJGRENS SYNDROME WHO PUT ME ON A DRUG TO SUPPRESS THE IMMUNE SYSTEM. AFTER I WAS ON IT FOR A WHILE THEY DID EXTENSIVE BLOOD WORK WHICH INDICATED PROBLEMS WITH MY LIVER. WENT TO A LIVER SPECIALIST AND I MENTIONED THE HERBS I WAS TAKING. HE SUGGESTED I STOP, WHICH I DID. LOW AND BEHOLD, AS SOON AS IT WAS OUT OF MY SYSTEM, MY LIVER RETURNED TO NORMAL. SINCE THEY DID NOTHING, I HAVE NO INTENTION TO GO BACK ON THEM OR ANY OTHER HERB. SO IF YOU PLAN TO TAKE HERBS BE SURE TO CHECK THEM OUT THOROUGHLY BEFORE YOU BUY THEM AS THEY MAY DO MORE HARM THAN GOOD.

I ALSO STOPPED TAKING THE DRUG TO SUPPRESS MY IMMUNE SYSTEM, AS IT WAS CAUSING ME TO LOSE MY HAIR. ONE GOOD THING, BECAUSE I HADN’T FINISHED TALING ALL THE HERBS, I CONTACTED THE COMPANY I ORDERED THEM FROM, AND THEY REFUNDED ALL MY MONEY, WHICH SURPRISED ME. I THOUGHT I WOULD BE OUT THE MONEY.

HOPE THIS INFO HELPS YOU.

PATTI - WISCONSIN



From: Amanda Diskey [mailto:adis...@yahoo.com] Sent: Monday, May 04, 2009 7:28 AMTo: tmic-list@eskimo.comSubject: [TMIC] herbs























hey everyone, I was wondering if anyone takes any herbs for their tm? i saw about the valerium root and melatonin for sleep, and i see advertisements for herbs to treat "myelitis" all the time online. so i was just wondering if anyone has ever tried any of them and what the results were. also, i loved the poems akua, i too am stuck in a wheelchair and it breaks my heart every day. It is so very hard not to be able to do the things you want to do any more. I want to walk again more than anything. A good friend of mine said that james 1:2 says "consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that testing of your faith develops perseverance." You have to run this race with your eyes on Jesus or you will fall. She is probably the best "friend" i have and she inspires me to try harder. I know that faith will pull us through!



amanda

RE: [TMIC]

[kimr1999]

ok that is scary, I also dreamed I was roller skating agan (ok it was the 70's and roller disco) but I was moving all over the floor!
-- Original message from "Tami Streeter" tstree...@abf.com: -- 








Grace,

Thank you for your post. I find myself longing to go there just to know I have tried everything too, but it is so far and financially out of the question for now. My dreams for “big lottery winnings” have just changed just a bit from what they used to be. 
Speaking of dreams, I dreamed I was roller skating last night – it was wonderful and though some may think it silly, it gives me hope.


Thanks,
Tami 




From: Grace M. [mailto:grace...@gmail.com] Sent: Friday, April 24, 2009 10:11 AMTo: JaniceCc: tmic-list@eskimo.comSubject: Re: [TMIC]




Hi Janice, 




It's Mayo treatment protocol for NMO that has kept me on my feet and still alive. *What would Hopkins or Mayodo that would make any difference in your recovery?* For me at this point, nothing---it is what it is. Sometimes we just have to bite the bullet, swallow hard, and accept things for what they are. I know that I will have future attacks of TM, blindness, and eventually brain lesions---unless of course, a cure is discovered. I also know that I could die during an acute attack. More than a few of our Advocacy Group members have passed since our launching in 2006. That being said, it is research by the bigger and more prominent facilities,that has allowed me to have the standard of care that I now enjoy. I've got an unbelievable neuro here in PA. I consider myself to be so luckythat he took an active interest in my case, and successfully diagnosed me. He is at the University of Pittsburgh Medical Center, and it is quite prestigious in it'sown right. 




In the beginning, whenever I was new to all of this, I spent my waking moments grasping at straws. *Maybe they're wrong---they have to be wrong? Maybe if I did this? Maybe if Isaw this neuroor that neuro?Maybe if I went to this hospital?* ad infinitum. I quite effectively robbed myself of a good quality of life. I was just too busy wallowing in my own grief at that point. One day, I just made up my mind that I would dedicate myself to learning about this *thing* and helping and educating others.It was the one thing that i could still do at that point. 




This is a rambling post I know, but there is a point. Whenever I decided to get busy doing what I had to do, I started to collect any and all technical papers thatI couldget my hands onconcerning this disease. What I found, was that the bulk of research was coming out of the Mayo Clinicand Japan. I managed to locate other patients nationally and worldwide(Andit was not an easy task as NMO is incredibly rare,much more so than TM from other causes.), and discovered that a high percentage of them were Mayo patients.They were diagnosed and placed on treatment protocols, and wereexperiencing the best degree of stability that could be expected. Now, we always suggest a visit to the Mayo for newly diagnosed patients, or those who are still in the diagnostic process. Their level of expertise is phenomenal. Right now, I am sitting her on pins and needles waiting for the American Academy of Neurology meeting to be completed, as PhaseI of the NMO+ Genetic Study that myself and many of our members are participating in, is complete and preliminary results are tobe announced at the meeting. My own neuro will be there, but is unable to stay for the entirety, andI cannot wait to see him in a week or two, to find out what the scoop is.The point of all of this is---if you have an opportunity to go to the Mayo or Hopkins, by all means do so. Will you get a different slant on your disease or disorder? Maybe not, maybe all has been done that can be done, butat the very least, you will know that you have been seen by the best, and can put your mind at rest. 




I hope that I haven't offended anyone. 




Grace




 
















 

Re: [TMIC] leg and foot comfort in bed

[kimr1999]

I love summer as I can wear shorts and don't have anything touching my legs !! I can not take ANYTHING touching my feet, no "soft socks" shoes even my feet resting on the foot pegs on my wheel chair hurts.. the stinging inmy feet somedays so unbearable but have learen to just cope and deal with it. It is a comfort to have my extended TM family and know that I am not the only one who goes thru this everyday, 
-- Original message from "bradebi" brad...@gmail.com: -- 









I miss jeans (Levi's) the most...I have worn Jeans and a t-shirt all my life..I cant wear shoes or socks or stand sheets or blankets on me, and if my Husband rubs my back by going up my spine then it puts me in a spasm that is very painful..I hate it..but I don't want my Husband to stop touching me.
Debi
T4 Spastic paraplegic
South Lake Tahoe, Ca.


---Original Message---


From: jrushton
Date: 4/15/2009 8:49:19 AM
To: balmat...@aol.com; tmic
Subject: Re: [TMIC] leg and foot comfort in bed

One thing I did find is that I sure can't wear jeans anymore because the denim causes immediate pain and leads to painful spasms. There are a few other fabrics that do the same thing. The safest is lightweight cotton knit. Jeanne


---Original Message---


From: balmat...@aol.com
Date: 04/15/09 00:23:53
To: tmic-list@eskimo.com
Subject: [TMIC] leg and foot comfort in bed
I think that this is something that most of us suffer from at some point during our TM lives, skin sensitivity against fabric, and it's the worst when we are trying to get some much needed sleep.I have purchased so many sets of sheets and blankets over my TM years (T 8-10, 6/1/99), and I have had this sensitivity for most of that time. It started as sensitivity and is so often PAIN. I've gone from egyptian cotton, very good quality flannel, jersey (like T-shirt material) and all sorts of thread counts of cotton. In sheets, I think that most of the time, my most comfortable sheet happens to be the jersey. I'm not saying that I can always have my legs against them, because I cannot, I lay on my back many nights with my knees bent so nothing touches my legs. Blankets are much worse, so you need to get the most comfortable sheet you can near your skin. If you have any "old" pajama bottoms, those are also some of the most comfortable, or I wear the short ones. I've bought some microfiber plush pants this year from OldNavy.com and they have been warm on my legs and haven't irritated them. I am very much looking forward to warmer weather when I can wear short pants all the time and not being uncomfortable.Hugs to all, Barbara A in CA 


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Re: [TMIC] Lack of Communication

[kimr1999]

I also can not wear shoes or socks. Not even the ‘softest socks” out there, I can’t tale anything touching my feet. I have to sleep with my feet outside of the covers because I can’t take the sheets touching my feet. The skin on my feet feels tight and they burn like they are frying in grease. Winter is hard as when I am in public without shoes or socks on so many people stop me to tell me its cold and why don’t I have anything on my feet. I get tired of telling the long story so just tell them due to nerve damage I can’t wear them. Then people start telling me “wear soft socks” I tell them sock and shoes burn m feet. But its amazing how people do not listen and keep telling me which socks to buy that will help…I understand people mean well but it’s hard to explain that even my feet toughing the foot pegs on my wheel chair is very painful. So far I have learned to try to put them up when I can, and I keep mint type foot lotion with me all the time and it is a short time relief. So when it’s snowing or freezing out here I am rolling around bare foot. But funny thing is I love foot massages. When someone rubs my feet it feels so good and I don’t want them to stop.
Have tried Neuratin, did not work, how I am on 60mg Cymbalta and it seems to help the nerve damage in my legs but no change in my feet.
-- Original message from "L T CHERPESKI" cherp...@msn.com: --  


I am exactly the same! So what do you do about shoes? I arrived at my Rheumatologists office in flat open sandals in 8 inches of snow this winter. He looked down at my feet and said "I don't even need to ask"
Also it hurts to have my very soft sheets touch me.I know there are a lot of us who have this challenge. Suggestions anyone? Thanks

Linda (Idaho)

- Original Message - 
From: kimr1...@bellsouth.net 
To: Janice ; Patricia Cooley ; 'jrushton' ; 'tmic' 
Sent: Wednesday, April 08, 2009 7:24 PM
Subject: Re: [TMIC] Lack of Communication


Same here! my feet burn 24/7, they fell like there in grease frying all the time. I can not take socks or shoes on my feet, even the blankets oin the bed hurt them.
-- Original message from "Janice" jan...@centurytel.net: -- 



Can we switch problems?! I also love St. Crois Falls, Wis. I have relatives there and it is beautiful!

- Original Message - 
From: Patricia Cooley 
To: 'jrushton' ; 'Janice' ; 'tmic' 
Sent: Wednesday, April 08, 2009 3:50 PM
Subject: RE: [TMIC] Lack of Communication


HI JANICE:
I DIDN’T GET YOUR ORIGINAL POST ABOUT BEING WARM ALL THE TIME, BUT DID GET JEANNE’S ANSWER TO YOU. I HAVE THE COMPLETE OPPOSITE PROBLEM. I AM COLD B! ALL THE TIME. THE WORST ARE MY FEET. THEY FEEL LIKE A BLOCK OF ICE MOST OF THE TIME. THIS WINTER I HAVE BEEN MEISERABLE. I HAVE HAD TO HUDDLE UNDER BLANKETS WHENEVER I AM SITTING STILL FOR A WHILE. EVEN LAST SUMMER WHEN WE HAD THE AIR CONDITIONING ON, I HAD TO HAVE A SWEATER. I HAVE BEEN TOLD TM SCREWS UP YOUR INTERNAL THEMOSTATE. I DON’T WANT TO TAKE ANY MORE MEDS SO WILL JUST KEEP A SWEATER HANDY WHEN IT IS TIME TO HAVE THE AIR ON THIS SUMMER. 
TAKE CARE, JANICE.


PATTI IN WISCONSIN







From: jrushton [mailto:jrush...@columbiaenergyllc.com] Sent: Wednesday, April 08, 2009 9:08 AMTo: Janice; tmicSubject: Re: [TMIC] Lack of Communication






Hi, Jan,



It looks like we TMer's are back in business with all of the notes going back and forth and your temp. problem is one of the main subjects right now! I'm so glad we're back in business as I miss you all when we take our 'naps' as we do off and on.



I'm off to stay with my little Sis for a couple nights so we can meet up with my big Sis and go to our monthly '60's Chicks' luncheon in Grandview which is where we graduated from. All Grandview 'chicks' no matter what year they graduated try to meet and we have lunch, chat for a couple hours and off we go. It is really a special time as we have all learned how special life is and is not to be taken for granted. Some we haven't seen since graduation or longer. Take care, all! Jeanne in Dayton




---Original Message---




From: Janice

Date: 4/7/2009 9:52:58 PM

To: transverse myelitis

Subject: [TMIC] Lack of Communication



Hey Guys!!! Sounds like everyone is really ready for SPRING! I am really ready to dig my hands into the dirt and get my flower pots ready for summer. I can't plant in the ground anymore, but I sure go nuts with my pots! We have already planted pansies and they are looking great. Won't be long for spring.



Got another question for you all. Do you have a problem with all of a sudden getting too hot - and no one else is? It isn't

hot flashes, had a complete hysterectomyover 20 years ago. This just started since TM (2007). My doc has given me patches

of clonidine. You change it every week and it does help - doesn't cure it, but it helps. I am dreading warm, humid weather because that is when it is the worst. We live in Missouri and the summers get pretty warm 

Re: [TMIC] Lack of Communication

[kimr1999]

Same here! my feet burn 24/7, they fell like there in grease frying all the time. I can not take socks or shoes on my feet, even the blankets oin the bed hurt them.
-- Original message from "Janice" jan...@centurytel.net: -- 



Can we switch problems?! I also love St. Crois Falls, Wis. I have relatives there and it is beautiful!

- Original Message - 
From: Patricia Cooley 
To: 'jrushton' ; 'Janice' ; 'tmic' 
Sent: Wednesday, April 08, 2009 3:50 PM
Subject: RE: [TMIC] Lack of Communication


HI JANICE:
I DIDN’T GET YOUR ORIGINAL POST ABOUT BEING WARM ALL THE TIME, BUT DID GET JEANNE’S ANSWER TO YOU. I HAVE THE COMPLETE OPPOSITE PROBLEM. I AM COLD B! ALL THE TIME. THE WORST ARE MY FEET. THEY FEEL LIKE A BLOCK OF ICE MOST OF THE TIME. THIS WINTER I HAVE BEEN MEISERABLE. I HAVE HAD TO HUDDLE UNDER BLANKETS WHENEVER I AM SITTING STILL FOR A WHILE. EVEN LAST SUMMER WHEN WE HAD THE AIR CONDITIONING ON, I HAD TO HAVE A SWEATER. I HAVE BEEN TOLD TM SCREWS UP YOUR INTERNAL THEMOSTATE. I DON’T WANT TO TAKE ANY MORE MEDS SO WILL JUST KEEP A SWEATER HANDY WHEN IT IS TIME TO HAVE THE AIR ON THIS SUMMER. 
TAKE CARE, JANICE.


PATTI IN WISCONSIN







From: jrushton [mailto:jrush...@columbiaenergyllc.com] Sent: Wednesday, April 08, 2009 9:08 AMTo: Janice; tmicSubject: Re: [TMIC] Lack of Communication






Hi, Jan,



It looks like we TMer's are back in business with all of the notes going back and forth and your temp. problem is one of the main subjects right now! I'm so glad we're back in business as I miss you all when we take our 'naps' as we do off and on.



I'm off to stay with my little Sis for a couple nights so we can meet up with my big Sis and go to our monthly '60's Chicks' luncheon in Grandview which is where we graduated from. All Grandview 'chicks' no matter what year they graduated try to meet and we have lunch, chat for a couple hours and off we go. It is really a special time as we have all learned how special life is and is not to be taken for granted. Some we haven't seen since graduation or longer. Take care, all! Jeanne in Dayton




---Original Message---




From: Janice

Date: 4/7/2009 9:52:58 PM

To: transverse myelitis

Subject: [TMIC] Lack of Communication



Hey Guys!!! Sounds like everyone is really ready for SPRING! I am really ready to dig my hands into the dirt and get my flower pots ready for summer. I can't plant in the ground anymore, but I sure go nuts with my pots! We have already planted pansies and they are looking great. Won't be long for spring.



Got another question for you all. Do you have a problem with all of a sudden getting too hot - and no one else is? It isn't

hot flashes, had a complete hysterectomyover 20 years ago. This just started since TM (2007). My doc has given me patches

of clonidine. You change it every week and it does help - doesn't cure it, but it helps. I am dreading warm, humid weather because that is when it is the worst. We live in Missouri and the summers get pretty warm and humid.  But we keep our house pretty cool in the winter too. I really notice it when I am more active.

What about you all?



I have only been on the site a couple of months, but I really miss your "chatting" when it is quiet. I know every one of us has a lot to deal with, some more than others. But, when we are emailing, we are all on level ground and getting to know the real person, not 

just the TM person. I have many friends, but I count myself very fortunate to have found you all.



Janice

[TMIC] Jude

[kimr1999]

Dear Jude, you are in our thoughts and prayers. You will have very strong arms around you Friday durring your surgery and recovery

















Faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1 Sometimes it's hard to put your trust in things you can't see, or touch, or hear. But, with a God like ours, you don't have to. Because we can see Him in the eyes, hear Him in the voices, and feel Him in the touch of people who care about us. 

Re: [TMIC] need help with rehab center recommendations in US

[kimr1999]

Barbara, Shepherd Center her in Altlanta is an awesome facilit. They have three diffrent rehab facilities depending on the level of paralisis. 
Check out the link to the facility and they have videos of what they can offer. (I attend a lot of the sporting activities) and the support the patient and family get there is wonderful!
Shepherd Center/Atlanta, GA
Specialty hospital for people with spinal cord injury, acquired brain injury, multiple sclerosis, spina bifida, neuromuscular and urological disorders.http://www.shepherd.org/









Shepherd Center is a private, not-for-profit hospital devoted to the medical care and rehabilitation of people with spinal cord injury and disease, acquired brain injury, multiple sclerosis and other neuromuscular problems.Based in Atlanta, Shepherd Center has been helping people through some of the most difficult and life-changing experiences they can imagine for more than three decades.Each year the Center admits hundreds of patients and conducts thousands of outpatient clinic visits. By focusing on highly-specialized care, Shepherd Center has developed a unique expertise and has become a nationally respected model for rehabilitation.As a leading facility for research, as well as an organization that sets the standards for rehabilitative outcomes, Shepherd Center helps shape the face of rehabilitation in the United States. Whether studying a new device, testing an improved surgical procedure or developing a groundbreaking treatment method, research at Shepherd Center translates directly into an improved quality of life for our patients.
-- Original message from balmat...@aol.com: -- Hello all, Our god-daughter, Monica,works as an aide at Craig Hospital, whichexclusively treatsspinal cord and brain injuriesin the Denver, Co. area. She called last night and told me aboutone of her patients who is a paraplegic with no movementin legs or toes, but has sensation. She does not have a diagnosis. She didn't say how strong the sensation was. This occured from a flu that she couldn't shake. Needless to say,this ladyis very anxious since the doctors are telling her the same thing that we've all heard - that they can't tell her what her outcome will be, just do her therapy and see what comes.Monica didn't have too much information for me when she called, but will look at her chart tomorrow when she goes back to work. She thinks this all started about 4 months ago, but doesn't know the progression from the flu to symptoms, etc.Why am I telling you all of this??? I hate saying "this lady", but that's allI know at this point. Anyway,her husband is in the military and got orders to transfer to Germany right before this occured. He was able todelay his deploymentfor a short time, but will need to leave soon. She doesn't know if she will be able to get good therapy once she leaves the country as a dependent, and of course, wants the best for herself. I know as a military person it would be great, but possibly not as a dependent.She wants to know if anyone can recommend any rehab centers around the country. Any area at this time will be considered, but she'll need to look into what her insurance will pay, if anything, and evaluate what she can do. Please let me know if you haveany information about a center you've either been to or heard of and I'll pass it on. From looking at the Craig Hospital website, it looks like a very good center. I just know that they will be releasing her eventually and we all are scared when that happens.Thank you, and as always, big hugs, Barbara A in sunny CA (at least the sun is shining today and in mid 60's) 


Great Deals on Dell 15" Laptops - Starting at $479 

[TMIC] For Jude

[kimr1999]

For Jude

[TMIC] When God

[kimr1999]

When God leads you to the edge of the cliff, trust Him fully and let go, only 1 of 2 things will happen. Either He'll catch you when you fall, or He'll teach you how to fly! 'The power of one sentence! God is going to shift things around for you today and let things work in your favor. If you believe, send it. If you don't believe, delete it. God closes doors no man can open  God opens doors no man can close 
PEOPLE MAY NOT REMEMBER EXACTLY WHAT YOU DID, OR WHAT YOU SAID IN YOUR LIFE, ~BUT~THEY WILL ALWAYS REMEMBER HOW YOU MADE THEM FEEL

Re: Fw: [TMIC]

[kimr1999]

My turn
My name is Kim Harrison

I live in Atlanta, GA and was 45 in 04when I got TM. I was on a business trip to Dallas, TX when I was stricken with this disease. I went out Sept 4th, 2004 and was to only be there a week.I was scheduled to come home to GA on Oct 8th, almost made it home. 

I got up the morning of October 6th and my right foot was asleep and tingled, I keep taping my foot on the floor to wake it up. I figured I slept wrong and pinched a nerve by 9:00am I could not walk at all the tingling had move up past my knee cap and when I tried to walk I kept walking into walls and falling down. The crew there keep telling me to go to ER, and I just laughed at them, for my foot being asleep, please!, well my 10:00 I can't walk at all and was carried to a car and off to the ready care. Doctor there did a few quick tests and sent me straight to the ER. (He thought I was having a stroke). When we got to the ER 5 miles away they were waiting outside for me. I kept laughing that they offered curb side service. They rushed me to a room and there started the "Barrage of Test" by 3:00pm I had 2 MRI’s, 3 CAT scans ER Doctors are totally baffled can quote from the ER Doctor was “We can not figure out what is wrong with you and have never seen anyone present in the ER with such rapid case of paralysis. Now the "tingling" and paralysis has moved up past my thigh, and I can no longer move my right leg at all, not even wiggle my toe!
I was admitted to the hospital, by now my husband back in Atlanta is totally freaking out and I am still making light of the whole situation. Lucky for me I had family close by and some one was with me until my company few my husband Brian out. When I woke up the next day my left foot started to tingle and I knew at that point something was really wrong. It took the neurologist until Monday 5 days latter to finally tell me I have Transverse Myelits which mean nothing to me, as far as I understood when we left he very well could have told me I had cooties and it meant the same. After all the test it was the doctors labeled my onset of TM as Idiopathic, to this day they can not tell me how I got this.

I was in the hospital a little over a week and then moved to a rehab faculty next to the hosp (more like old folks home) I was the young kid there at 45 years old, I was in patient rehab for a week and finally sent back home to GA. I went back to work a month after getting out of the hospital. 
I use my walker around the house and wheel chair in public. My right leg still drags like I've had a stroke; the "banding" pain around my waist and the burning in my feet would be my two primary issues with this. I can not wear pants unless they have elastic so I can pull them up over my belly button due to the banding pain, I also can no longer wear shoes, socks even hurt my feet due to the burning and stinging in my feet. This makes it hard to use my AFO's because I can't take shoes on my feet.

It is so hard to explain to people that I in no way saw this coming. That I got up one morning and with in 8 hours I was paralyzed. But life does go on and it’s just the adjustment we all have to learn to deal with daily regardless if you have TM or any other medical condition. You work and live life with has been dealt to you in the most positive way you can.

Kim Harrison
Atlanta, GA
-- Original message from "Janice" jan...@centurytel.net: --  I am going to tell my story because I feel "odd man out"! Also because  you all have already been so giving and including of me. I thank you so  much.  The 2nd week in January, 2007, I had weakness in my legs. I did water  aerobics, so thought I was exercising too hard. By Saturday, the 13th, my  legs collapsed and my husband got me to the ER. I never had the striking  pain so many of you talk about when myelitis first hits. During the 1st  week in the hospital I was a Code Blue because the catheter gave me an  infection and it went systemic. After that my body just kind of fell  apart. I developed a "bleeder" in the colon and they almost didn't find  it soon enough. After colon surgery I was kept in a "sleep" state for 3  days. My family had no idea if I would survive. Every 3rd day after that  something else happened to my body. My doctors would not leave town. I  spent 9 weeks in the hospital, part in rehab, and needed 19 ppints of blood.  I have a colostomy and still have some trouble with my bladder. I self  cath twice a day. But, if you would see me today sitting down, you would  think I was the picture of health. I use a cane to walk and because of  the feeling in my legs coming back with nerve pain, I have a stimulator  implanted in my back. It helps cover the pain. I have a  wonderful husband, my hero, and a loving daughter, son-in-law, and 4-year  old grandson. We have many really good friends that have never left my  side and we do many social things - love that! Well, that is my story.  Hoping to get to 

[TMIC] For Jude, Be my strength

[kimr1999]

Deart Jude
Be strong and courageous, do not be afraid or tremble at them, for the LORD your God is the one who goes with you. He will not fail you or forsake you. Deuteronomy 31:6 
-- Original message from Trudy Ogilvie mother...@gmail.com: -- Dear Jude

Remember Jude that nothing, absolutely nothing will ever separate you from the love of Christ Jesus. The Spirit is being poured out on you and the Spirit of Godwill make you strong, so let go of all your fears and know that we are storming heaven with love and prayers for you! Love... Trudy

On Sat, Feb 21, 2009 at 11:02 AM, pkeene2...@aol.com wrote:

Dear Jude,As you face this surgery,just remember that we are all with you in spirit, even though you may not know all of us. We are right by your side with powerful energy and prayers as you enter the unknown. As frightening as it is, God will lead you through it. He will be there holding your hand.You have such an unselfish attitude worrying about us, that you won't be able to comfort us. Just get well soon and return to us in good health. Thank you for your love and concern.Love,Priscilla in TN


-Original Message-From: L T CHERPESKI cherp...@msn.comTo: tmic-list@eskimo.com; heyjude48...@aol.comSent: Fri, 20 Feb 2009 11:49 pmSubject: Re: [TMIC] Be my strength


Dearest Jude,

It is indeed a comfort to know that this wonderful TM Familyis always here for us. And you are right - we are all brothers and sisters, we have so much to share.

You will be in my prayers, Jude, all the way. I pray you will find peace in knowing we are all here for you, as you have always been for us.You've said you need our strength. We will be your strength.

Love to you, dear Jude, 

Linda

- Original Message - 
From: heyjude48...@aol.com 
To: tmic-list@eskimo.com 
Sent: Monday, February 09, 2009 12:15 PM
Subject: [TMIC] Be my strength









Wow...how difficult it is for some of us to keep smiles on our faces and thanksgiving in our hearts.

With the loss of loved ones, family strife, difficulties out of our control, lurching, falling, not walking at all and the pain and agony of TM it is a miracle to find ourselves within a group of people with arms long enough to stretch around each and every one of us.

It seems as though we all believe in something larger than ourselves. We are strong in our personal faiths and each one of us has a place within this group. If even one of us leaves the List, something is lost forever. When a new member joins, something is gained. We are stronger yet.

I must apologize for the times that I have been out of commission and not there for those of you that are in need of comfort. Please know that even though I may not be writing to the List, you are all, my brothers and sisters, in my Prayers...Always. Know that in your heart of hearts and may it help to know that I am still there for you.

When I am at my lowest, I take such comfort in knowing that you are there for me. You hold me up, clear my head, help me with the pain while I wait for the next shot of morphine. Your love lifts me up, your Prayers and thoughts keep me strong and I know that I am not alone.

Some of you call regularly, some send cards and pictures, others send flowers and a couple of you that live nearby, even visit in person. One of you stands by me Praying and Singing Hymns even when I cannot join you. Know my thanks is true.

I will shortly be going through a surgery that I am not feeling comfortable about. I have thoughts of not making it through. I need you to help me. I worry about the infection spreading even stronger throughout my body and blood. I am not yet ready to die.

Thank you all for being my lifeline. I am counting on you to send your Prayers up to God in Heaven in the name of His Son, Jesus Christ. It does not matter if you do not believe...I will believe for both of us.

Thank you for your help. I am scared and need your strength. Give me only the energy you can spare. I love you. I am not going to be writing much but if you need me, let me know.

Jude

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A Good Credit Score is 700 or Above. See yours in just 2 easy steps! 



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Re: [TMIC] Adult camp

[kimr1999]

Here is the link This camp is awesome!

www.shepherd.org/asw 






Adventure Skills Workshop
May 2009

Jackson's Gap, Alabama 


Contact: Ashleigh Koontz 

404-350-7786

For more information: www.shepherd.org/asw 


-- Original message from Trudy OGILVIE mother...@msn.com: -- 

In an e-mail quite a while ago someone mentioned that there was a camp for Adults (are we handicapped or disabled) to go to a camp about 2 hours from Atlanta, Ga. Does anyone by any chance have the info on that 
In beautiful, awesome 70 degree weather in Va. here in Feb!
The snow will arrive this weekend. 
As they say "payback is a bitch"
Take care
Trudy
Worrying does not empty tomorrow of its troubles;
It empties today of its strengths.

Windows Live™: Keep your life in sync. Check it out. 

Re: [TMIC] Today's thought

[kimr1999]

Went back to work last wedensday, The company I work for does not have disability so i cut the recovery time from 6 weeks to 5 days. I feel really good and nerosurgen said the surgery had nothing to do with my TM but I am now able to put more pressue on my right leg when I use my walker! so thngs just keep getting better!

Thanks for asking!
-- Original message from "Pieter and Heather" pieterheat...@shaw.ca: --  



Kim,

That is such a good saying. 
How are you doing since your surgery? 

Hugs,
Heather in Calgary 

- Original Message - 
From: kimr1...@bellsouth.net 
To: TMIC 
Sent: Monday, February 09, 2009 4:00 PM
Subject: [TMIC] Today's thought








February 9,2009
Miracles are of all sizes. And if you start believing in little miracles, you can work up to the bigger ones. 

Re: [TMIC] Victory Junction

[kimr1999]

Just a suggestion..For Adults Shepherd Center in Atlanta offers an "Adventures Skill Camp" in May. Check out the site www.shepherd.org/asw 

They offer a fullly handicap accessable camp ground, Water Skiing, Tubbing, Jet Skis' rock wall climbing, zip line, water polo, scub lessons,wheel chair ruby, fishing, archery, canoe, kayak, if your able to "safely to the activitives Sherpherd will find a way for you to do these, Camp fires at night with marshmellow roast, skits, plays, I belive they take as young as teens also,






Adventure Skills Workshop
May 2009

Jackson's Gap, Alabama 


Contact: Ashleigh Koontz 

404-350-7786

For more information: www.shepherd.org/asw 


-- Original message from "Deborah Nord Capen" dca...@earthlink.net: -- 



Sorry, only for kids that have TM to give them the opportunity to meet other kids with TM. We get our chance to meet others during the symposia, so this one is for the kids:-)


- Original Message - 
From: fr...@franksheldon.com 
To: Deborah Nord Capen ; tmic-list@eskimo.com 
Sent: Saturday, January 31, 2009 1:32 PM
Subject: Re: [TMIC] Victory Junction
 I know there are a few parents on the list who have children between the  ages of 6-16. Sounds great!One question-If I have a child below the age of 16 who doesn't have tm (totally healthy), but I do ( Age unknown), can we still sign up for the camp???F

[TMIC] For all my fellow TM'ers

[kimr1999]

After hearing how poorly Jude is feeling I felt the need to send this out.



Through every trial and moment of pain, we stand together to help one another.Sometimes the hand of a stranger comes along and lifts up our hearts..Our responsibility is to continue that selfless act of love and pass on the comfort.
Blessed are those who mourn for they shall be comforted.~ Mathew 5:4

Re: [TMIC] Re: Alas, the joys of having TM

[kimr1999]

"If I scoot, then I poot"!!! 
I do that a lot in my walker,, you would think the darn thing has some type of defect, can't be me! LOL
-- Original message from "jrushton" jrush...@columbiaenergyllc.com: -- 









I swear, Trudy, telling on and laughing at myself is the only way I can make it thru all that we have to put up with living with this TM and it's little 'side kicks'!!! I've made my family do the same thing and we actually have taken something pretty awful into a 'we can make it' situation! Hugs for you all but don't hug me too hard or you know what can happen!!! Jeanne in Dayton




---Original Message---


From: Trudy Ogilvie
Date: 1/28/2009 10:23:26 PM
To: jrushton
Cc: tmic
Subject: [TMIC] Re: Alas, the joys of having TM
I love it, I absolutely love it Isn't it the absolute worst... not to be too gross but some go on forever!!! Thanks for sharing I would bet there are a few more "embarrassing stories " out there. again thanks for a good laugh Jeanne! 
with much love
Trudy
On Tue, Jan 27, 2009 at 10:59 AM, jrushton jrush...@columbiaenergyllc.com wrote:






I'm going to tell on myself after reading Trudy and Patti's e-mails about working...

I was a full time hard working lead nurse when the TM hit and of course, was off for quite some time due to the paralysis. The clinic insisted that I not worry, that they were going to keep my position (I think because nobody else wanted it!! :)) for whenever and however I was able to return. They even wanted to set up a room where I could rest and nap if I needed to. 

When I was ready to try, I had to figure out how toget there which was 40 miles so they insisted on taking turns coming to get and take me back home! FinallyJack worked with me helping me get back to driving and I have NO idea how I did it but I did. So the big daycame and off I went.Ihad called them to let them know I was on my way and when I got there, there were pictures and signs all over the place showing everyone with this horrified look on their faces. Such fun.

Anyway,I didn't work one-on-one with patientslike I did when I was just nursing...I just walked around being bossy!! I liked that and when I got back they had a walker all duded up with streamers, a horn, stickers, and a basket. Well, if they got smart with me, they got a whack from my walker wheel. They were scared to death of me...rght. 

One day one of the nurses was about to give an allergy shot and she got a phone call and asked me to give the shot...no problem. As Iwas standing right next to the patient giving him his shot, what happened but I released agreat, big, loud fart The patient was one I knew well and he was gracious enough to not even flinch or let on like he heard but there was NO way he couldn't. I finished, went back to my desk and put my hands to my face and cried.The nurse that I was helping came right in and asked what was wrong and began crying right along with me until I started laughing and then we had a hard time stopping."Here I get to be a nurse for the first time in a long, long time and what do I do but let loose with a great big fart!" 
You know that with this TM, some of us lose control of bodily functions and that was one of them. Of course,it took all of about five minutes for everyone to hear about it so it was a day of laughter all day long. Ijust wasn't able to continue working and had to put my resignation in not long after that and was given a wonderful going away party and guess what was thebig highlight??? Anyway, like I said...this is a story telling on myself...Jeanne in Dayton


---Original Message---


From: Trudy Ogilvie
Date: 1/27/2009 11:17:18 AM
To: Patricia Cooley
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC] Tuesday am
Patti, 
You will do just fine. Just getting back to work will give you the energy to hang in there. I know exactly how you feel. I had to go back with a walker. It was a bit humiliating but God gives us what we need when we need it. So stay strong, remember you are never alone, God will always send you an angel to help you if you need it. I cannot open many of the heavy doors at school, clinics etc. but it seems that there's always some kind person ready to help me - some much older than I and some very surprising young angry looking kids that turn out to be angels.!!! At first my pride would not let me accept the help but I have learned it is good to give and to receive! Have wonderful day let us know how it goes!
Trudy


On Tue, Jan 27, 2009 at 11:01 AM, Patricia Cooley patticoo...@wi.rr.com wrote:



KIM – I AM SO GLAD YOUR SURGERY IS FINALLY OVER. WE WERE ALL THINKING AND PRAYING FOR YOU THAT ALL GOES WELL. I HAD THE COMPRESSION WRAPS WHEN I FIRST WAS IN THE HOSPITAL. THEY FELT GREAT. I WISH I HAD THEM AT HOME.

TODAY I AM A LITTLE NERVOUS AS I AM GOING BACK TO WORK TODAY FOR THE FIRST TIME IN 7 MONTHS. I WAS ONLY WORKING PART TIME (2 AFTERNOONS A WEEK) AT THE SWITCHBOARD IN OUR LOCAL 

Re: [TMIC] Tuesday am

[kimr1999]

Here I am Came home last night and tell you what HOME feels great!!! 

Feel good have more energy than I thought I was going to of course I know to take it easy have been in bed all day resting and needed to sit up for a little while. Hurts to talk where the incision is but guess that will pass in time. As for the TM, still have it. But hey at least my neck that I didn’t know I had a problem with is fixed! LOL!!
I just started a new job six months ago and found out I don’t have disability so looks like the six week recovery will be bumped up to five days. They told me not to lift anything over 5 lbs for the next few weeks and my wheel chair weighs 22 so we have it arranged that when I get to work in the morning someone will come out and help me unload it and load back up in the evening. All I do is sit at a desk all day anyways so as would be the same as sitting at the house, I know to ask for help if I need it and let pride take a back seat for now. 

I would like to thank all my TM family for the one on one emails and encouragement,. It’s amazing to have such a wonderful support system and to know others out there care so much. Jenna, you have been a life line to me and will never know how much it meant for you to take the time and come sit with me in the hospital and stay with me during surgery and recovery. Words can not express my thanks! Oh and I do have your sweater, will get it to ya as soon as I can. 

So all and all life is good, no complaints weather here in Atlanta is much better than up north right now, you guys in the north try to stay warm and safe

Kim
-- Original message from Trudy Ogilvie mother...@gmail.com: -- And me too!!! Lots of uplifting news this weekJude I can't get out to my mailbox due to this snowstorm that has turned into an icy nightmare but you are in my thoughts and prayers... Kim you're doing awesome, keep us informed and sounds like Patti made it thru her first day back with flying colors. There will always be obstacles for us to face but in the end they make us stronger!
Trudy
On Tue, Jan 27, 2009 at 12:59 PM, Catherine camoa...@yahoo.com wrote:


I second that! Catherine






From: jrushton jrush...@columbiaenergyllc.comTo: Patricia Cooley patticoo...@wi.rr.com; tmic tmic-list@eskimo.comSent: Tuesday, January 27, 2009 9:58:24 AM
Subject: RE: [TMIC] Tuesday am





I am so very thankful for you doing better, dear Jude, for you Kim getting to your doctor and thru your surgery so well, and for you Patti, for this new adventure you are taking. I am trulythankful that you are strong enough to even do the part time let alone tackle the full time. I am blessed for all of you, every one of you TM'ers that are such a strong part of my life. I thank God for each and every one of you. Jeanne in Dayton


---Original Message---


From: Patricia Cooley
Date: 1/27/2009 10:01:42 AM
To: kimr1...@bellsouth.net; tmic-list@eskimo.com
Subject: RE: [TMIC] Tuesday am


KIM – I AM SO GLAD YOUR SURGERY IS FINALLY OVER. WE WERE ALL THINKING AND PRAYING FOR YOU THAT ALL GOES WELL. I HAD THE COMPRESSION WRAPS WHEN I FIRST WAS IN THE HOSPITAL. THEY FELT GREAT. I WISH I HAD THEM AT HOME.

TODAY I AM A LITTLE NERVOUS AS I AM GOING BACK TO WORK TODAY FOR THE FIRST TIME IN 7 MONTHS. I WAS ONLY WORKING PART TIME (2 AFTERNOONS A WEEK) AT THE SWITCHBOARD IN OUR LOCAL MEDICAL CLINIC, BUT I ENJOYED GETTING OUT WITH PEOPLE. I HOPE I HAVE THE STRENGTH TO LAST ALL AFTERNOON.

I HOPE YOU FINALLY GET A FULL NIGHTS SLEEP VERY SOON. TAKE CARE.

PATTI - WISCONSIN


From: kimr1...@bellsouth.net [mailto:kimr1...@bellsouth.net] Sent: Tuesday, January 27, 2009 7:07 AMTo: tmic-list@eskimo.comSubject: [TMIC] Tuesday am


Morning, I can not talk; my neck is so sore and hurts. Well made it thru surgery, had no clue it was going to hurt so much later. I have a drain tube coming out of my neck, once they check it they might let me go home today. Need lots of pain meds right now!!

They have these compression wraps around my legs that squeeze and release my legs from ankles to thighs. To stop blood clots and let me tell you they feel great!! Its likes having leg messages now this is something I want to take home!
They are going to set me up with some physical therapy; I have some weakness in my arms which I don't need with the wheel chair walker. 

Still working on 1 to 4 hours sleep so having a hard time with consternation and memory issues, I have to write everything down..

If all goes well I will be back to work Monday! And will have an income to pay for all of this Yippee

So once I find out if I am going home I will pass the word on!

Thanks again for all the encourgement and prayers I can really feel the support and friendship

RE: [TMIC] Tuesday am

[kimr1999]

LOL with the Steroids all I wanted was FOOD! just FOOD!!! 
-- Original message from "Butcher, Bernard G (NY80)" bernie.butc...@honeywell.com: -- 








Welcome home Kim! I know what it feels like to “get out” my limit is 10 days in the hospital, then I start tying sheets together


Barney




From: kimr1...@bellsouth.net [mailto:kimr1...@bellsouth.net] Sent: Wednesday, January 28, 2009 2:27 PMTo: TMIC; Trudy Ogilvie; Catherine; judith hoopsSubject: Re: [TMIC] Tuesday am


Here I am Came home last night and tell you what HOME feels great!!! 

Feel good have more energy than I thought I was going to of course I know to take it easy have been in bed all day resting and needed to sit up for a little while. Hurts to talk where the incision is but guess that will pass in time. As for the TM, still have it. But hey at least my neck that I didn’t know I had a problem with is fixed! LOL!!
I just started a new job six months ago and found out I don’t have disability so looks like the six week recovery will be bumped up to five days. They told me not to lift anything over 5 lbs for the next few weeks and my wheel chair weighs 22 so we have it arranged that when I get to work in the morning someone will come out and help me unload it and load back up in the evening. All I do is sit at a desk all day anyways so as would be the same as sitting at the house, I know to ask for help if I need it and let pride take a back seat for now. 

I would like to thank all my TM family for the one on one emails and encouragement,. It’s amazing to have such a wonderful support system and to know others out there care so much. Jenna, you have been a life line to me and will never know how much it meant for you to take the time and come sit with me in the hospital and stay with me during surgery and recovery. Words can not express my thanks! Oh and I do have your sweater, will get it to ya as soon as I can. 

So all and all life is good, no complaints weather here in Atlanta is much better than up north right now, you guys in the north try to stay warm and safe

Kim

-- Original message from Trudy Ogilvie mother...@gmail.com: -- And me too!!! Lots of uplifting news this weekJude I can't get out to my mailbox due to this snowstorm that has turned into an icy nightmare but you are in my thoughts and prayers... Kim you're doing awesome, keep us informed and sounds like Patti made it thru her first day back with flying colors. There will always be obstacles for us to face but in the end they make us stronger! 

Trudy

On Tue, Jan 27, 2009 at 12:59 PM, Catherine camoa...@yahoo.com wrote:


I second that! Catherine











From: jrushton jrush...@columbiaenergyllc.comTo: Patricia Cooley patticoo...@wi.rr.com; tmic tmic-list@eskimo.comSent: Tuesday, January 27, 2009 9:58:24 AM 

Subject: RE: [TMIC] Tuesday am







I am so very thankful for you doing better, dear Jude, for you Kim getting to your doctor and thru your surgery so well, and for you Patti, for this new adventure you are taking. I am trulythankful that you are strong enough to even do the part time let alone tackle the full time. I am blessed for all of you, every one of you TM'ers that are such a strong part of my life. I thank God for each and every one of you. Jeanne in Dayton




---Original Message---




From: Patricia Cooley

Date: 1/27/2009 10:01:42 AM

To: kimr1...@bellsouth.net; tmic-list@eskimo.com

Subject: RE: [TMIC] Tuesday am



KIM – I AM SO GLAD YOUR SURGERY IS FINALLY OVER. WE WERE ALL THINKING AND PRAYING FOR YOU THAT ALL GOES WELL. I HAD THE COMPRESSION WRAPS WHEN I FIRST WAS IN THE HOSPITAL. THEY FELT GREAT. I WISH I HAD THEM AT HOME.

TODAY I AM A LITTLE NERVOUS AS I AM GOING BACK TO WORK TODAY FOR THE FIRST TIME IN 7 MONTHS. I WAS ONLY WORKING PART TIME (2 AFTERNOONS A WEEK) AT THE SWITCHBOARD IN OUR LOCAL MEDICAL CLINIC, BUT I ENJOYED GETTING OUT WITH PEOPLE. I HOPE I HAVE THE STRENGTH TO LAST ALL AFTERNOON.

I HOPE YOU FINALLY GET A FULL NIGHTS SLEEP VERY SOON. TAKE CARE.

PATTI - WISCONSIN


From: kimr1...@bellsouth.net [mailto:kimr1...@bellsouth.net] Sent: Tuesday, January 27, 2009 7:07 AMTo: tmic-list@eskimo.comSubject: [TMIC] Tuesday am


Morning, I can not talk; my neck is so sore and hurts. Well made it thru surgery, had no clue it was going to hurt so much later. I have a drain tube coming out of my neck, once they check it they might let me go home today. Need lots of pain meds right now!!

They have these compression wraps around my legs that squeeze and release my legs from ankles to thighs. To stop blood clots and let me tell you they feel great!! Its likes having leg messages now this is something I want to take home!
They are going to set me up with some physical therapy; I have some weakness in my arms which I don't need with the wheel chair walker. 

Still working on 1 to 4 hours sleep so having a hard time with consternation and memory issues, I have to write 

[TMIC] Today's thought

[kimr1999]

January 27,2009
Always you can go higher, for within yourself you are greater than you think. 

[TMIC] Tuesday update (1 to 4 sleep again)

[kimr1999]

Morning, well here it is 1 to 4 again! 

I had no clue I would be in this much pain….

Will have to wait on surgeon to see if I get to go home today…. Ready to get out of here. They have a tube in my neck draining and once they look at that they might be able to determine if I can go home today. 

Other than tired (getting used to 3 hours sleep) feeling ok, of course neck is sore.

They have these compression wraps on both of my legs that squeeze my legs intermitly prevent blood clots and let me tell you they feel great, want to see if I can sneak this home! LOL

So let’s home Dr Lets me go home today

[TMIC] Tuesday am

[kimr1999]

Morning, I can not talk; my neck is so sore and hurts. Well made it thru surgery, had no clue it was going to hurt so much later. I have a drain tube coming out of my neck, once they check it they might let me go home today. Need lots of pain meds right now!!

They have these compression wraps around my legs that squeeze and release my legs from ankles to thighs. To stop blood clots and let me tell you they feel great!! Its likes having leg messages now this is something I want to take home!
They are going to set me up with some physical therapy; I have some weakness in my arms which I don't need with the wheel chair walker. 

Still working on 1 to 4 hours sleep so having a hard time with consternation and memory issues, I have to write everything down..

If all goes well I will be back to work Monday! And will have an income to pay for all of this Yippee

So once I find out if I am going home I will pass the word on!

Thanks again for all the encourgement and prayers I can really feel the support and friendship

[TMIC] kim Monday AM update

[kimr1999]

Monday morning update

Ok on NPO until after surgery at 2:00 with the steroids its not going to be easy. For breakfast I was able to have 2 Ambian’s and one Morphine shot, so this is my breakfast of champions today! LOL… think this will get my mind off of food while I am in a coma! He he he

Jenna will be here today with me and once I am out of recovery she will send a broadcast email on how I am doing. I feel good and this is and it’s the right decision to make. They took me off the steroids yesterday for about 3 hours and the pain/stinging in my arms came back so seeing as this has been going on for four years it’s time to bit the big one, get it done and move one. 

Thanks again for all the thoughts and prayers!!!

[TMIC] Sill up night 3

[kimr1999]

Well it looks like I am 2 for 2 with the whole sleep thing, it’s now Sunday 4:00am went t bed at 1:00 same as yesterday. So I am beginning to tell that sleep is so over rated! LOL. Took the Ambian at 10:30 with Morphine and here 3 hours later wide awake!, I think I need to sneak out of here hit one of the bars up for “Happy Hour” sneak back in and maybe get 6 hours sleep? LOL! 
Hoping to see the Nero Surgeon today and he tells me I can go home.

Once I have word on what’s going on I will be sure to pass on!

Thanks again for all the support!!!

Kim

[TMIC] Sunday update on Kim

[kimr1999]

Sunday update on Kim

Nero-surgeon just left, they have me scheduled to surgery Monday at 2:00 (figured I am already at hospital,all ready dressed for the occaison might as well go for it!) LOL

They are doing the least evasive procedure to relieve the spinal cord compression at C-7, and C-6, surgery should take about 45 minutes and I and scheduled to go home Tuesday!. So all and all had nothing to do with TM but after it’s all said and done I will still have TM, so get to stay with my TM family for now just be a little different for a few days!


Thanks again for the entire one on one support and up lifting emails; I don’t know what I would do without my extended TM family

So all is good, now let’s focus on Jude getting better!

PS Atlanta suport group safe to assume I won't be at the meeting today!

Thanks again

Kim

[TMIC] JUDE

[kimr1999]

With all that is going on with Jude lets stop, read below and really think of the words of comfort we give each other on this site



Through every trial and moment of pain, we stand together to help one another.Sometimes the hand of a stranger comes along and lifts up our hearts..Our responsibility is to continue that selfless act of love and pass on the comfort.

~*~ 
-- Original message from montzma...@aol.com: -- 

I JUST SPOKE WITH JUDE., ITS NOT GOOD NEWS AT ALL.THE DR. JUST LEFT AND TOLD HER THE INFECTION IS THRU HER WHOLE BODY. THEY NOW ARE CALLING IN A INFECTIOUS DISEASE DR, WELL ITS TO LATE.
SHE TOLD ME FOR ALL WHO PRAY TO PRAY FOR HER.SHE DOES NOT THINK THERE IS ANYTHING THEY CAN DO FOR HER.
SHE DOES NOT WANT DAVE TO KNOW YET WHAT THE DOCTOR TOLD HER. DAVE MADE A COMMENT TO HER THAT HE IS AFFRAID OF LOOSING HER.
SHE WANTS US TO HELP DAVE THRU THIS.
ELLA, PATTI AND I HE KNOWS THE BEST. I PROMISED WE WOULD BE THERE FOR HIM. I HAVE CALLED HIM AND E-MAILED HIM.SHE IS SUFFERING SO BAD I CANNOT HARDLY SEE THE KEYBOARD FROM TRYING NOT TO CRY.
SHE IS IN MC CLAIRNES HOSPITAL HER ROOM IS 1205. THE HOSPITAL NUMBER IS 810-342-2173 ITS HARD FOR HER TO GET TO THAT PHONE.
HER CELL SHE HAS WITH HER ITS 810-252-5841.IF SHE DOES NOT ANSWER SHE IS SLEEPING ARE IN SEVERE PAIN.
I AM SO SAD BUT I KNEW THIS WOULD HAPPEN EVNTUALLY.JUDE DOES NOT WANT US CRYING ABOUT HER BUT TO JUST REMEMBER HER.
SHE WILL ALWAYS BE WITH ME, SHE IS MY ANGEL AND WILL BE IN MY HEART ALWAYS .I WISH I COULD BE WITH HER BUT I CANNOT.
I HOPE PATTI SEES THIS AND COULD GO AND SING TO HER, SHE LIKES THAT AND SEEING PATTI. I AM GOING TO WRITE PATTI JUST IN CASE SHE DID NOT GET THIS MESSAGE! NO MATTER WHAT HAPPENS I HOPE JUDE GOES QUIETLY IN HER SLEEP WITH NO PAIN.
BUT SHE DIED TWICE ON US BEFORE SO WE JUST HAVE TO WAIT THIS OUT
 GOD BLESS JUDE AND DAVE AND OUR TM FAMILY!



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[TMIC] Update on Kim

[kimr1999]

First I would like to thank Jenna for coming to the hospital to help me today (and the visit was great) 
Nero left and good news the paralysis and stinging in my arms and hands has nothing to do with my TM. The MRI’s they did last night found 3 herniated discs on my neck that is causing spinal cord depression causing my arms and hands to go numb. He called neurosurgeon to come see me tomorrow and let me know what my options will be. So far a friend that had the same this said the least evasive is to inject steroids directly into the disc to stop the bone on bone rub and release the compression on the spinal cord this is good news!!! So this explains why after receiving the first dose of IV steroids my arms and hand improved 90% within 5 hours. 
If it were TM related the damage can not be reversed! But the herniated disc can be repaired! So YIPPIE!!!

Down side right now is with all the steroids I have not slept at ALL since I go up Wed at 6:30 am, serious best I have done is a 20 minute nap today! They gave me morphine and Ambian sleep pills tonight so hoping I get some sleep tonight! I am starting to feel like a zombie going thru the motions, getting harder to focus with sleep deprivation.

Will post what Nero-surgeon says once I hear from them tomorrow

Again thanks for the one on one email I have gotten the concern and advice mean a lot to me
What a great second family we all have in each other! Note J

Note: to the Atlanta TM suport group if I get out of the hospital by Sunday in time for our meeting I will be there!!

[TMIC] Any news on Jude?

[kimr1999]

Any news on Jude?

[TMIC] Update

[kimr1999]

First I would like to express my heartfelt prayes and good thoughts to Jude, from the email contacts I have had with her she is truly an inspirational woman and has help support so many others in there time of need without thinking about her self

So to All My TM family Thank Youall for the broadcast and personal responses last night. I as at a total loss on what to do as never had issue with my arms or hands. I did go to the ER and I am back in Piedmont hospital in Bukhead (Downtown Atlanta GA) Got up Wed am neck and back was stiff and I thought I slept wrong and went on in to work, by 2 my hands started to sting and get stiff (like when you have been raking leaves all day and last there stiff and sore) I could not make a fist or straighten them out… to painful to even pick up my office pen left work on time and went home… progressively got worse and pain was almost unbearable 
Talked to Jenna for awhile kicking around what to do, she gave me the number to our on call Nero. He said to go back and rest and only go to ER if my mobility is effected… well after and hour of “rest” I could not get comfortable, and when I went to stand up my good left leg it gave out like my right would and I hit the floor, we had already packed an ER bag so headed to Piedmont. From time in door to ER bed was less than 15 minutes… Nero on call was the one I talked to at home, he told ER doc to start running the usual test too see if there was any infections, if not start the steroids ASAP, then comes my friend Morphine! 
I was admitted to a room by 3 and by 5 I could make a fist and straightened my hands out, was still painful but I could do it... by 9 am most the pain is gone now still a little sore, There going to give me triple the steroids required to keep the left leg from getting worse ! (Oh and let me tell you Morphine at 9am for breakfast ROCKS)!!
I had my MRI’s today Brain (yep was confirmed I have a Brain) Neck, upper and lower spine), they did contrast and Non contrast, Let me tell you 3 hours in a MRI, not fun! Will know results tomorrow and will post ya all

They are talking about sending me home tomorrow with the IV pump and bags and I can changed myself or see how I feel and if I am still week I will be here until Sunday (I vote for stay here and let them do the work, will have plenty on my plate once I get home)

So good new is the left leg did not spread and the pain level is back to what it was Tuesday before the newest relapse

So all and all this flair up /relapse is turning out good new and I get all the free “Sugar Free Pudding” I want!, Bad new is if I see "House" walk in I will just cash my chips in LOL
(Note with the Morphine I have not had any sleep since I got up at6:00amWed to go to wokdso going on 45 hours and no sleep, from here on you will have to “sound out a lot of my emails) Per Jenna last year when I was sending out email on Morphine they were funny to read (they made sense to me and I even spell checked but guess Morphine plays tricks with my spell check ability) The words look fine to me but she said there not. Sso will keep ya posted if you can’t understand the email pass it to a small child and they will translate for you!
Hugs and prayers to all of you!
(Oh and looks like I wont be making the Atlanta support group this weekend
Kim

Re: [TMIC] constipation

[kimr1999]

The sterorids were causing serious problems with constipation and not being able to "push" my Nero turned me on to a Herbal Tea called "Smoth Move" you can get it at any vitaman/herb shop. It's natural and great, does not upset your stomach (like a lot of pill and vegetable do), does not react to fast, and you can drink the amount your comfortable with. (Full cup was to much for me so 1/2 everyday.)
-- Original message from "Mary Thompson" gor...@earthlink.net: -- 



I am affected up to my collarbone and it has affected my digestion. Regular fiber has the opportunity to move so slowly through me it dries up and creates aplug that becomes very dangerous.You canhave a piece of your intestine die and it will kill you quicker than you can believe. I use reglan (metoclopramide)to help my stomach empty. I use Miralax aka glycolax butnow generic(polyethylene glycol 3350) to move things through the pipe. It is not fiber, it is not absorbed by the body, it just slicks things along. You do have to adjust it as you get used to it so you don't have a blowout, but I just figured out how much to take depending on how much food I eat and it works great.I've been on this for about four or five years. I tried the other treatments and had so much trouble with cramps, lack of action and variability that this has been a dream for me. Best of luck.

- Original Message - 
From: Regina Rummel 
To: tmic-list@eskimo.com 
Sent: Sunday, January 18, 2009 3:47 PM
Subject: [TMIC] constipation


Years ago, the doctor prescribed LACTULOSE to my mother after she had a stroke leaving her with major problems including a horrible case of constipation. He said that it doesn't irritate your bowels. 

Wondering if any of you even heard of it.

Kevin, I would like to hear more about the herb you recommend.
R

[TMIC] Atlanta, GA area TM’ers

[kimr1999]

All Atlanta TM'ers.. so far have not heard from anyone new yet... 

so were still on for this Sunday 1/25 Olive Garden, Douglasville, @ 2:00

Look forward to seeing everyone!

Re: [TMIC] Children with TM (was Needing help...)

[kimr1999]

The Transverse Myelitis Network

try this link


http://transversemyelitis.ning.com/?xgsi=1
-- Original message from jharpe...@aol.com: -- 

There is a little girl named Rachel with TM whose mom used to be on here. Her brothers started a Reading For Rachel program. the web site is here which includes a video of Rachel:http://www.readingforrachel.org/She's 9 years old now and contracted TM when she was less than a year.

There is a family camp coming up in August for children with TM:
http://www.myelitis.org/forum/viewtopic.php?f=106t=3294

The TM Message forums have one forum forchildren with TM and another for teens with TM:
http://www.myelitis.org/forum/

There is a little boy named Cole whose parents, I believe, are Neil and Wendy (hope I have that right!) Maybe they'll see this. In fact, I think I'll change the subject to Children with TM so that hopefully they will. Photos of him are here:
http://www.myelitis.org/gallery/thumbnails.php?album=searchtype=fullsearch=Cole

Hope that helps!

Barbara H.
http://barbarah.wordpress.com/


In a message dated 1/14/2009 1:43:57 P.M. Eastern Standard Time, wolft...@optonline.net writes:
Cody Unser is an inspirational young woman who was struck with TMin her teens.Here is her website: http://www.cufsf.org/content.asp?CustComKey=346548CategoryKey=350032pn=PageDomName=cufsf.orgAlso, Netta Ganor is on the TMIC, and is a wonderful young woman with TM. I don't have her address, but I'm sure someone will.Kevinjrushton wrote: Hi, everyone, I recently found out about a little girl in the third  grade that is really having a tough time with her TM and needs to find  some other children or even someone that might have been stricken with  TM when they were young and are older now. I am getting the details  to see how she can 'chat' with someone but this is my first step.  Sure hope someone can help her.. Jeanne in Dayton   


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[TMIC] Atlanta, GA area TM’ers

[kimr1999]

There are 6 of us in the Atlanta area (west side of the city) that have been meeting once a month for the last year and a half. We are planning our January support group meeting for Saturday1/24 and looking for new attendees before we chose a location. We have been meeting in Douglasville and Hiram and need to know the area’s of town you are coming from in able to pick a location in the Atlanta area to meet. We are extending the invitation to anyone who would like to join us for some lunch, TM conservations/help and support. 
We encourage you to bring your care giver/partner/spouse, ect as TM has also effected there lives and, it gives them a chance to express there feelings and concenns.



Thank you

Kim
Jenna
Betty
Susan
Randy
Martha

[TMIC] NEW YEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[kimr1999]

ANOTHER YEAR IS HERE
 MY OH MY!
 2008 JUST FLEW BYE

WE ALL HAVE HAD PROBLEMS
 IT DOES NOT SEEM FAIR
WHO EVER SAID LIFE WAS FAIR!

 ITS HARDER ON MANY OF US
 OTHERS NOT SO MUCH
 I TAKE IT DAY BY DAY
THATS WHAT I HAVE LEARNED!!!

 WE CANNOT LIVE IN THE PAST
BUT THE FUTURE IS IN OUR CONTROL
WE HAVE OUR FAMILY AND FRIENDS
 SOME JUST HAVE THE LIST!!!
  
THIS LIST IS PRECIOUS
 REALLY ITS A GOD GIVEN GIFT
 HELPED BY MR. LUBIN
 THERE WOULD NOT BE ANY LIST!!

I THANK GOD EVERYDAY
 FOR HAVING THIS WONDERFUL LIST
ITS SO INFORMATIVE TO EVERYONE ON IT
 I DO NOT KNOW WHAT I WOULD DO
 IF THERE WAS NO LIST!!!
 
OUR TM FAMILY IS SUCH A HELP
 WE KNOW WHAT WE GO THRU
 WE SHARE THINGS PERSONAL 
 OUTSIDE THE LIST WE CANNOT DO
 EVERYONE DOES NOT UNDERSTAND BUT WE DO!!

 SO LETS BE GREATFUL!
 WE HAVE THIS SPECIAL BOND
2009 IS TOMORROW
 LIFE WILL GO ON!!

 I WISH YOU ALL THE BEST!
 I THINK OF YOU ALL
WE ALL WILL BE BLESSED
LETS NOT FORGET
 GOD IS WATCHING OVER USALL!

 HAPPY NEW YEAR EVERYONE
 Kim 

 




 
 

 
 














 

[TMIC] Check out YouTube - Il Divo - Amazing Grace

[kimr1999]

Wow is all I can say about this one, I pray it blesses you like it did me. 


Subject: Fw: Check out YouTube - Il Divo - Amazing Grace



4-1/2 minutes. The last 2-1/2 are awesome.


Click here: YouTube - Il Divo - Amazing Grace 

[TMIC] Merry Christmas

[kimr1999]

Merry Christmas to all my fellow TMer's Thanks for all the support and updates!

Re: [TMIC] Hello i need your urgent assistance..

[kimr1999]

Seem "HINKEY" that his $$ and wallet was stolen but not his passport to pick up the money... HUM  

-- Original message from "Westgold" [EMAIL PROTECTED]: -- 




This is a scam, I have received these before. DO NOT SEND HIM ANY MONEY. 

- Original Message - 
From: robert hennessy 
To: tmic-list@eskimo.com 
Sent: Friday, December 05, 2008 3:18 PM
Subject: [TMIC] Hello i need your urgent assistance..



Hello,Sorry I didn't inform you about my traveling to UK for a program, am presently in London and i am stranded here because i misplaced my wallet on my way to the hotel where my money and other valuable things were kept.I will likeyou to assist me with a soft loan urgently with the sum of 1,850 GB Pounds to sort-out my hotel bills and get myself back home. I will appreciate whatever you can afford, i will pay back as soon as i return.So please use the details below to transfer the money to me through Western Union money transfer because i was told that is the only way i could be able to get it fast and leave. This is the detail belowName : Robert HennessyAddress:Kenilworth Road,Hampton-in-Arden Solihull,West MidlandsB92 0LWCountry :EnglandTest Question :Year of birth?Answer : 1981Amount Sent: ?kindly help me to make the transfer as soon as you receive this email and once you have it sent, send me the money transfer control number with details used in sending it. Also i have my passport to prove my identity at Western union here when receiving the money.Hope to hear from you soon.

Suspicious message? There’s an alert for that. Get your Hotmail® account now. 



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