Re: [TMIC] Transverse Myelitis Network

[L T CHERPESKI]

Patti, thank you for your heartfelt note. I also would like to thank all of you 
for the help I've received over the many years, and just for being there.  It 
is such a comfort knowing we have each other to share our pain and other 
challenges with this TM friend of ours- and, yes, also our joy!  I know a 
little depression is visiting me, but it will soon be gone.  I find myself 
thinking of all the outrageous things Pam said to me over time, and a smile 
appears out of nowhere.  Pam would want all of us to continue the support we 
have always shared as a group.  After all, it really is pretty special. 

Blessings to all TIAD
Linda
  - Original Message - 
  From: Patricia Cooley 
  To: 'Jill Z' ; 
ladyno...@aol.com ; 
heyjude48...@aol.com ; 
tmic-list@eskimo.com ; 'Tracey L. 
Black' 
  Sent: Wednesday, June 17, 2009 7:59 PM
  Subject: RE: [TMIC] Transverse Myelitis Network


  I HAVE ALWAYS FELT VERY WELCOME BY EVERYONE ON THIS SITE, EVEN THOUGH I  DO 
NOT SUFFER FROM SO MANY OF THE PAIN AND SUFFERING SO MANY OF YOU DO.  I DO HAVE 
PAIN BUT NOTHING I CAN’T LIVE WITH SINCE I HAVE NO CHOICE.  IT IS THE 
COMMUNICATION WITH ALL OF YOU THAT HAS HELPED ME SO VERY MUCH.  I WANT TO SAY 
THANKS TO YOU ALL.  I MYSELF HAVE FOUND THAT SINCE WE LOST PAM, I HAVE BEEN 
DOWN IN THE DUMPS WHEN I REALLY HAVE NO REASON TO BE.  I THINK A LITTLE 
DEPRESSION HAS SETTLED ON ALL OF US.  I KNOW IT HAS ME.  I FIND MYSELF FEELING 
MORE SORRY FOR MYSELF THAN I HAVE IN A LONG TIME.  I MISS MY DAILY E-MAILS FROM 
PAM WITH HER FUNNY JOKES.  I THINK AS A RESULT WE ARE ALL A LITTLE TESTY WITH 
EACH OTHER.  I KNOW PAM WOULD WANT US ALL TO GET ALONG.  I HOPE THAT TIME WILL 
HEAL US ALL.  AT LEAST I SO HOPE SO.

   

  BLESSINGS TO ALL OF YOU.

   

  ***TIAD**  AND LET’S HOPE IT IS A BETTER ONE FOR US 
ALL.

   

  PATTI - WISCONSIN

   

   

  From: Jill Z [mailto:jillybean60...@yahoo.com] 
  Sent: Wednesday, June 17, 2009 6:05 PM
  To: ladyno...@aol.com; heyjude48...@aol.com; tmic-list@eskimo.com; Tracey L. 
Black
  Subject: RE: [TMIC] Transverse Myelitis Network

   

Well said Tracy!

Jill

--- On Wed, 6/17/09, Tracey L. Black  wrote:


  From: Tracey L. Black 
  Subject: RE: [TMIC] Transverse Myelitis Network
  To: ladyno...@aol.com, 
heyjude48...@aol.com, tmic-list@eskimo.com
  Date: Wednesday, June 17, 2009, 1:14 PM

  As a caretaker/mother of a daughter who has had TM for 4 years now; 
this saddens me to read this. I am also a member of the one Yahoo TM site b/c 
for me it seems like it involves more children than adults and I can identify 
more with their issues. Since my daughter was inflicted at the age of 11 and is 
now 15 ½, I get lots of answers from the other site but also stay on this one 
b/c I want to know what the future may hold for my daughter as an adult. I know 
that we  ALL have been saddened by the passing of Pam but this should not be a 
time to bicker and a time for people to quit the site b/c they feel as though 
they are traitors for checking out another site. There have been numerous times 
that I have tried to unsubscribe and for some reason, it never works. Maybe I 
am supposed to stay on this site for another reason. I know I don’t write very 
much and maybe this email will just be taken with a grain of salt. Fortunately, 
my daughter seems to have a much lighter case of TM than a lot of others on 
this site. With that in mind, I still continue to read everyone’s emails b/c 
they make me feel so much more blessed that my daughter didn’t get inflicted as 
badly as others although she does deal with one or two of the symptoms. I can’t 
imagine what most of you feel on a daily basis with the pain, fatigue, banding, 
sweats, cold feelings etc. My daughter hasn’t had any pain, other than at 
onset, and that was more of the tingling than anything. She is the typical 15 
year old and walks, with assistance through high school every day (except for 
now b/c school is over) and she still hangs out with her friends, she helps me 
around the house and she even babysits the 4 year old and 1 year old boys next 
door. She was confined to her wheelchair at one time but thanks to Dr. Kerr for 
helping us get into the Kennedy Krieger Institute for Spinal Cord Injuries, she 
has been walking for about 2 years. Time has flown by over the last 4 years 
that it is hard to remember life before TM. I hope that everyone continues to 
stay on this site b/c it is full of great information and great people that are 
willing to answer any question that is ever asked. No one judges anyone for 
asking questions. 

  As Pam would say !!TIAD!!!

   

Tracey L. Black

RE: [TMIC] Transverse Myelitis Network

[Patricia Cooley]

I HAVE ALWAYS FELT VERY WELCOME BY EVERYONE ON THIS SITE, EVEN THOUGH I  DO NOT 
SUFFER FROM SO MANY OF THE PAIN AND SUFFERING SO MANY OF YOU DO.  I DO HAVE 
PAIN BUT NOTHING I CAN’T LIVE WITH SINCE I HAVE NO CHOICE.  IT IS THE 
COMMUNICATION WITH ALL OF YOU THAT HAS HELPED ME SO VERY MUCH.  I WANT TO SAY 
THANKS TO YOU ALL.  I MYSELF HAVE FOUND THAT SINCE WE LOST PAM, I HAVE BEEN 
DOWN IN THE DUMPS WHEN I REALLY HAVE NO REASON TO BE.  I THINK A LITTLE 
DEPRESSION HAS SETTLED ON ALL OF US.  I KNOW IT HAS ME.  I FIND MYSELF FEELING 
MORE SORRY FOR MYSELF THAN I HAVE IN A LONG TIME.  I MISS MY DAILY E-MAILS FROM 
PAM WITH HER FUNNY JOKES.  I THINK AS A RESULT WE ARE ALL A LITTLE TESTY WITH 
EACH OTHER.  I KNOW PAM WOULD WANT US ALL TO GET ALONG.  I HOPE THAT TIME WILL 
HEAL US ALL.  AT LEAST I SO HOPE SO.

 

BLESSINGS TO ALL OF YOU.

 

***TIAD**  AND LET’S HOPE IT IS A BETTER ONE FOR US ALL.

 

PATTI - WISCONSIN

 

 

From: Jill Z [mailto:jillybean60...@yahoo.com] 
Sent: Wednesday, June 17, 2009 6:05 PM
To: ladyno...@aol.com; heyjude48...@aol.com; tmic-list@eskimo.com; Tracey L. 
Black
Subject: RE: [TMIC] Transverse Myelitis Network

 


Well said Tracy!

Jill

--- On Wed, 6/17/09, Tracey L. Black  wrote:


From: Tracey L. Black 
Subject: RE: [TMIC] Transverse Myelitis Network
To: ladyno...@aol.com, heyjude48...@aol.com, tmic-list@eskimo.com
Date: Wednesday, June 17, 2009, 1:14 PM

As a caretaker/mother of a daughter who has had TM for 4 years now; this 
saddens me to read this. I am also a member of the one Yahoo TM site b/c for me 
it seems like it involves more children than adults and I can identify more 
with their issues. Since my daughter was inflicted at the age of 11 and is now 
15 ½, I get lots of answers from the other site but also stay on this one b/c I 
want to know what the future may hold for my daughter as an adult. I know that 
we  ALL have been saddened by the passing of Pam but this should not be a time 
to bicker and a time for people to quit the site b/c they feel as though they 
are traitors for checking out another site. There have been numerous times that 
I have tried to unsubscribe and for some reason, it never works. Maybe I am 
supposed to stay on this site for another reason. I know I don’t write very 
much and maybe this email will just be taken with a grain of salt. Fortunately, 
my daughter seems to have a much lighter case of TM than a lot of others on 
this site. With that in mind, I still continue to read everyone’s emails b/c 
they make me feel so much more blessed that my daughter didn’t get inflicted as 
badly as others although she does deal with one or two of the symptoms. I can’t 
imagine what most of you feel on a daily basis with the pain, fatigue, banding, 
sweats, cold feelings etc. My daughter hasn’t had any pain, other than at 
onset, and that was more of the tingling than anything. She is the typical 15 
year old and walks, with assistance through high school every day (except for 
now b/c school is over) and she still hangs out with her friends, she helps me 
around the house and she even babysits the 4 year old and 1 year old boys next 
door. She was confined to her wheelchair at one time but thanks to Dr. Kerr for 
helping us get into the Kennedy Krieger Institute for Spinal Cord Injuries, she 
has been walking for about 2 years. Time has flown by over the last 4 years 
that it is hard to remember life before TM. I hope that everyone continues to 
stay on this site b/c it is full of great information and great people that are 
willing to answer any question that is ever asked. No one judges anyone for 
asking questions. 

As Pam would say !!TIAD!!!

 

Tracey L. Black

Certified Insurance Service Representative

Hockley & O'Donnell Insurance Agency

Phone- 717-334-6741, x 29

Fax-717-334-3414

My hours:  9:00 a.m. - 5:00 p.m.

 

 

Thank you for providing information to us. Please be aware that no coverage is 
bound and no change to your insurance program is confirmed until verified by a 
licensed agent during regular business hours. If you do not hear from us within 
1 business day, please re-contact us in case your information has not been 
retained

 

From: ladyno...@aol.com [mailto:ladyno...@aol.com] 
Sent: Wednesday, June 17, 2009 1:03 PM
To: heyjude48...@aol.com; tmic-list@eskimo.com
Subject: Re: [TMIC] Transverse Myelitis Network

 

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

Re: [TMIC] Transverse Myelitis Network

[Janice]

 Tracey,
  I was shocked to read that your 11 year old daughter had TM.   Bless her 
heart, she has come a long way and I know that
  that is only done with hard work.   I am sure it was a family affair in 
getting her to where she is.   Bless you all.
  Janice
  - Original Message - 
  From: Jill Z 
  To: ladyno...@aol.com ; heyjude48...@aol.com ; tmic-list@eskimo.com ; Tracey 
L. Black 
  Sent: Wednesday, June 17, 2009 6:05 PM
  Subject: RE: [TMIC] Transverse Myelitis Network


Well said Tracy!
Jill

--- On Wed, 6/17/09, Tracey L. Black  wrote:


  From: Tracey L. Black 
  Subject: RE: [TMIC] Transverse Myelitis Network
  To: ladyno...@aol.com, heyjude48...@aol.com, tmic-list@eskimo.com
  Date: Wednesday, June 17, 2009, 1:14 PM


  As a caretaker/mother of a daughter who has had TM for 4 years now; 
this saddens me to read this. I am also a member of the one Yahoo TM site b/c 
for me it seems like it involves more children than adults and I can identify 
more with their issues. Since my daughter was inflicted at the age of 11 and is 
now 15 ½, I get lots of answers from the other site but also stay on this one 
b/c I want to know what the future may hold for my daughter as an adult. I know 
that we  ALL have been saddened by the passing of Pam but this should not be a 
time to bicker and a time for people to quit the site b/c they feel as though 
they are traitors for checking out another site. There have been numerous times 
that I have tried to unsubscribe and for some reason, it never works. Maybe I 
am supposed to stay on this site for another reason. I know I don’t write very 
much and maybe this email will just be taken with a grain of salt. Fortunately, 
my daughter seems to have a much lighter case of TM than a lot of others on 
this site. With that in mind, I still continue to read everyone’s emails b/c 
they make me feel so much more blessed that my daughter didn’t get inflicted as 
badly as others although she does deal with one or two of the symptoms. I can’t 
imagine what most of you feel on a daily basis with the pain, fatigue, banding, 
sweats, cold feelings etc. My daughter hasn’t had any pain, other than at 
onset, and that was more of the tingling than anything. She is the typical 15 
year old and walks, with assistance through high school every day (except for 
now b/c school is over) and she still hangs out with her friends, she helps me 
around the house and she even babysits the 4 year old and 1 year old boys next 
door. She was confined to her wheelchair at one time but thanks to Dr. Kerr for 
helping us get into the Kennedy Krieger Institute for Spinal Cord Injuries, she 
has been walking for about 2 years. Time has flown by over the last 4 years 
that it is hard to remember life before TM. I hope that everyone continues to 
stay on this site b/c it is full of great information and great people that are 
willing to answer any question that is ever asked. No one judges anyone for 
asking questions. 

  As Pam would say !!TIAD!!!



  Tracey L. Black

  Certified Insurance Service Representative

  Hockley & O'Donnell Insurance Agency

  Phone- 717-334-6741, x 29

  Fax-717-334-3414

  My hours:  9:00 a.m. - 5:00 p.m.





  Thank you for providing information to us. Please be aware that no 
coverage is bound and no change to your insurance program is confirmed until 
verified by a licensed agent during regular business hours. If you do not hear 
from us within 1 business day, please re-contact us in case your information 
has not been retained



  From: ladyno...@aol.com [mailto:ladyno...@aol.com] 
  Sent: Wednesday, June 17, 2009 1:03 PM
  To: heyjude48...@aol.com; tmic-list@eskimo.com
  Subject: Re: [TMIC] Transverse Myelitis Network



  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

RE: [TMIC] Question for people on Lyrica?

[Janet Dunn]

 

 OH Cody

 

How you have made my day.  And all this time I have denied myself the
pleasure of a tall cold one. 

 

God Bless Ya, I am a happy camper to hear this news.

 

Janet 

 

TIAD  but I've got today to get through.

 

From: Cody [mailto:c...@austin.rr.com] 
Sent: June 17, 2009 4:41 PM
To: TMIC; Robert Pall
Subject: Re: [TMIC] Question for people on Lyrica?

 

RobertI specifically ask my new pain management doctor about this
subject. I ask because my wife always gets after me when I want a scotch and
reminds me of the Lyrica warning label. I am on the same dosge as you 150mg
3XD and Baclofen as well.  He said no problem with a beer, a scotch or a
glass of wine. He just said be careful and not overdo and absolutely don't
drive. He also said the warning labels are written by lawyers and not by
doctors or pharmacist. He said the caution on the warning labels are
appropriate but there is a certain element of CYA for the drug company built
in as well. I never have over two drinks and most of the time only one and
not every day either. So that's my 2 cents worth for the day as I sip my
glass of Pinot..Cody in Austin





E-mail message checked by Spyware Doctor (6.0.1.441)
Database version: 6.12630
http://www.pctools.com/en/spyware-doctor-antivirus/

Re: [TMIC]

[bradebi]

Lynne were do you find a chillow?
Debi

 

   


---Original Message---
 
From: lynne myers
Date: 06/17/09 06:33:50
To: kimr1...@bellsouth.net;  tmic
Subject: Re: [TMIC]
 
I sleep with a Chillow at night and it helps a great deal.  It is a gel
filled pad for your pillow and now I dont have to keep changing pillows all
night to find a cooler feeling one.
Lynne

--- On Tue, 6/16/09, kimr1...@bellsouth.net  wrote:


From: kimr1...@bellsouth.net 
Subject: Re: [TMIC]
To: "Janice" , "bradebi" , 
transverse myelitis" 
Date: Tuesday, June 16, 2009, 11:45 PM


no but will give it a try
-- Original message from "Janice" :
-- 

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


 <>

Re: [TMIC] Question for people on Lyrica?

[Cody]

RobertI specifically ask my new pain management doctor about this subject. 
I ask because my wife always gets after me when I want a scotch and reminds me 
of the Lyrica warning label. I am on the same dosge as you 150mg 3XD and 
Baclofen as well.  He said no problem with a beer, a scotch or a glass of wine. 
He just said be careful and not overdo and absolutely don't drive. He also said 
the warning labels are written by lawyers and not by doctors or pharmacist. He 
said the caution on the warning labels are appropriate but there is a certain 
element of CYA for the drug company built in as well. I never have over two 
drinks and most of the time only one and not every day either. So that's my 2 
cents worth for the day as I sip my glass of Pinot..Cody in Austin
  - Original Message - 
  From: Robert Pall 
  To: LadyOwl1961 ; tmic-list@eskimo.com 
  Sent: Wednesday, June 17, 2009 12:58 PM
  Subject: RE: [TMIC] Question for people on Lyrica?


  I have been on Lyrica for at least 3 years...I started with 2 pills a day 
(150mg each) and 2 years ago I increased it to 3 pills or 450 mg per day. I 
have had TM for 12 years and have found Lyrica to be the best drug as for 
helping the banding,numbness and pins and needles. The only side effects are 
they increase my appetite and you can not drink alcohol when you are taking 
Lyrica (I still have a beer or two..but no hard liquor).

  Rob in New Jersey



--
  From: LadyOwl1961 [mailto:k...@frontiernet.net] 
  Sent: Wednesday, June 17, 2009 12:49 PM
  To: tmic-list@eskimo.com
  Subject: [TMIC] Question for people on Lyrica?


  On May 6th of this year I was visiting friends in Thunder Bay, Ontario, 
Canada (where I am originally from and lived until 1999) when both myself and 
the friend I was staying with  got a very bad chest cold that lasted 2 ½ weeks. 
It was actually longer but just the tired run down feeling lingered. I visited 
my family doctor in Thunder Bay on May 11th to have my prescriptions updated 
and refilled when during all of this and he reminded me about my TM symptoms 
flaring up after a very bad flu/cold as this seemed to be the trigger in my 
1st. and  2nd  bouts. I returned home to the States on May 25th. It was about 
June 1st. that I woke up at home and it was like every symptom of my TM was in 
over drive. With no health care and not knowing what else to do I called my 
doctor in Thunder Bay. He then talked to my neurologist himself and called me 
back telling me that they agreed I should increase my Lyrica gradually then 
decrease it again over the course of 2 months as my bouts seem to last 
approximately 3 weeks. I am in the middle of doing all of this right now. My 
question is that I am wondering about the increase and decrease and if you 
noticed any change in your moods? Lately for some unknown reason I am angry. 
Angry at any and everything and the least little thing can set me off (sorry 
for the read receipt thing). I am trying to figure out if this is due to the 
lyrica (a side effect is depression) or just my emotions over having another 
bout? 

  Thanks

  Kathy (who now feels bad about her read receipt email)

RE: [TMIC] Transverse Myelitis Network

[Jill Z]

Well said Tracy!
Jill

--- On Wed, 6/17/09, Tracey L. Black  wrote:


From: Tracey L. Black 
Subject: RE: [TMIC] Transverse Myelitis Network
To: ladyno...@aol.com, heyjude48...@aol.com, tmic-list@eskimo.com
Date: Wednesday, June 17, 2009, 1:14 PM








As a caretaker/mother of a daughter who has had TM for 4 years now; this 
saddens me to read this. I am also a member of the one Yahoo TM site b/c for me 
it seems like it involves more children than adults and I can identify more 
with their issues. Since my daughter was inflicted at the age of 11 and is now 
15 ½, I get lots of answers from the other site but also stay on this one b/c I 
want to know what the future may hold for my daughter as an adult. I know that 
we  ALL have been saddened by the passing of Pam but this should not be a time 
to bicker and a time for people to quit the site b/c they feel as though they 
are traitors for checking out another site. There have been numerous times that 
I have tried to unsubscribe and for some reason, it never works. Maybe I am 
supposed to stay on this site for another reason. I know I don’t write very 
much and maybe this email will just be taken with a grain of salt. Fortunately, 
my daughter seems to have a
 much lighter case of TM than a lot of others on this site. With that in mind, 
I still continue to read everyone’s emails b/c they make me feel so much more 
blessed that my daughter didn’t get inflicted as badly as others although she 
does deal with one or two of the symptoms. I can’t imagine what most of you 
feel on a daily basis with the pain, fatigue, banding, sweats, cold feelings 
etc. My daughter hasn’t had any pain, other than at onset, and that was more of 
the tingling than anything. She is the typical 15 year old and walks, with 
assistance through high school every day (except for now b/c school is over) 
and she still hangs out with her friends, she helps me around the house and she 
even babysits the 4 year old and 1 year old boys next door. She was confined to 
her wheelchair at one time but thanks to Dr. Kerr for helping us get into the 
Kennedy Krieger Institute for Spinal Cord Injuries, she has been walking for 
about 2 years. Time has
 flown by over the last 4 years that it is hard to remember life before TM. I 
hope that everyone continues to stay on this site b/c it is full of great 
information and great people that are willing to answer any question that is 
ever asked. No one judges anyone for asking questions. 
As Pam would say !!TIAD!!!
 
Tracey L. Black
Certified Insurance Service Representative
Hockley & O'Donnell Insurance Agency
Phone- 717-334-6741, x 29
Fax-717-334-3414
My hours:  9:00 a.m. - 5:00 p.m.
 
 
Thank you for providing information to us. Please be aware that no coverage is 
bound and no change to your insurance program is confirmed until verified by a 
licensed agent during regular business hours. If you do not hear from us within 
1 business day, please re-contact us in case your information has not been 
retained
 

From: ladyno...@aol.com [mailto:ladyno...@aol.com] 
Sent: Wednesday, June 17, 2009 1:03 PM
To: heyjude48...@aol.com; tmic-list@eskimo.com
Subject: Re: [TMIC] Transverse Myelitis Network
 

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 Mes

[TMIC] unsubscribe

[Cyndy Fleming]

unsubscribe


  

Re: [TMIC] Re: WHAT DID YOU DO???

[Heyjude48458]

 
 
Cindy,
 
This is  from Jude...I am so sorry for your  leg.  To make a splint, cut 
off one leg of your dining table,  get the do it all "magic" gray tape and use 
the table leg as a splint,  cushion it with lots of dish towels, and stick 
it all together with the  gray tape.  That should hold until you get to the  
hospital.
 
You have my Prayers, my dear.  I hope the  ambulance gets there soon.  Keep 
in touch as you  can.
 
Love,
Jude
 
 
In a message dated 6/16/2009 2:51:53 P.M. Eastern Daylight Time,  
jmh1...@sbcglobal.net writes:

Cindy,
What in the world did you do to break  your leg???
jan

--- On  Tue, 6/16/09, Cindy McLeroy   wrote:



  
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 the orchestra section  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_ 
(http://us.mc820.mail.yahoo.com/mc/compose?to=parkersw...@aol.com)   
To: _a...@artfarm.com_ 
(http://us.mc820.mail.yahoo.com/mc/compose?to=a...@artfarm.com)  ; 
_tmic-l...@eskimo.com_ 
(http://us.mc820.mail.yahoo.com/mc/compose?to=tmic-l...@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 face the  parking 
lot and seldom 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 time 
tomorrow, I will try to address the  relationship issue.   

 

Download the _AOL Classifieds Toolbar_ 
(http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown0004) 
 for  local deals at your  
fingertips.







**Download the AOL Classifieds Toolbar for local deals at your 
fingertips. 
(http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown0004)

[TMIC]

[Cammy]

Before I unsubscribe I wanted to let each and every one of how much you have 
helped me.
My son's fiancée was paralyzed with TM/spinal stroke almost 2 years ago. As you 
know it has been quite a long road.
There is drug addiction involved as well, so a sad story with a 2 year old baby 
as well.
 One of the things I have learned around here, and I have learned a lot, is 
that there is always possibility, and there is ALWAYS a way through this.

I have pretty much stayed in the background, but if I had any info to share 
with ya'll I peeked my head up to try to give back.
Every one of you are unsung heroes, and in my small way, whenever I hear people 
I know who are big charitable people, I steer them in this direction.

GOD bless each and everyone of you. Thank you, thank you, thank you.   
TIAD!!! Cammy

Fw: [TMIC] Transverse Myelitis Network

[Catherine]

 



























AMEN   Thank you Tracey for putting this so eloquently.   I am here as a caregiver and I have never been afraid to ask any question. Sometimes I too, I have felt rejected .. so now I try not to take it personally.  I have learned so much from all my TM Family and I thank each and everyone of you for sharing.  I am quite shy by nature and usually observe.  However, when I feel passionate about something/someone  I let them know.
 
thoughts and prayers in honor of Pam TIAD,
Catherine
From: Tracey L. Black To: ladyno...@aol.com; heyjude48...@aol.com; tmic-list@eskimo.comSent: Wednesday, June 17, 2009 2:14:15 PMSubject: RE: [TMIC] Transverse Myelitis NetworkAs a caretaker/mother of a daughter who has had TM for 4 years now; this saddens me to read this. I am also a member of the one Yahoo TM site b/c for me it seems like it involves more children than adults and I can identify more with their issues. Since my daughter was inflicted at the age of 11 and is now 15 ½, I get lots of answers from the other site but also stay on this one b/c I want to know what the future may hold for my daughter as an adult. I know that we  ALL have been saddened by the passing of Pam but this should not be a time to bicker and a time for people to quit the site b/c they feel as though they are traitors for checking out another site. There have
 been numerous times that I have tried to unsubscribe and for some reason, it never works. Maybe I am supposed to stay on this site for another reason. I know I don’t write very much and maybe this email will just be taken with a grain of salt. Fortunately, my daughter seems to have a much lighter case of TM than a lot of others on this site. With that in mind, I still continue to read everyone’s emails b/c they make me feel so much more blessed that my daughter didn’t get inflicted as badly as others although she does deal with one or two of the symptoms. I can’t imagine what most of you feel on a daily basis with the pain, fatigue, banding, sweats, cold feelings etc. My daughter hasn’t had any pain, other than at onset, and that was more of the tingling than anything. She is the typical 15 year old and walks, with assistance through high school every day (except for now b/c school is over) and she still hangs out with her friends, she helps
 me around the house and she even babysits the 4 year old and 1 year old boys next door. She was confined to her wheelchair at one time but thanks to Dr. Kerr for helping us get into the Kennedy Krieger Institute for Spinal Cord Injuries, she has been walking for about 2 years. Time has flown by over the last 4 years that it is hard to remember life before TM. I hope that everyone continues to stay on this site b/c it is full of great information and great people that are willing to answer any question that is ever asked. No one judges anyone for asking questions. As Pam would say !!TIAD!!! Tracey L. BlackCertified Insurance Service RepresentativeHockley & O'Donnell Insurance AgencyPhone- 717-334-6741, x 29Fax-717-334-3414My hours:  9:00 a.m. - 5:00 p.m.  Thank you for providing information to us. Please be aware that no coverage is bound and no change
 to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained From:ladyno...@aol.com [mailto:ladyno...@aol.com] Sent: Wednesday, June 17, 2009 1:03 PMTo: heyjude48...@aol.com; tmic-list@eskimo.comSubject: Re: [TMIC] Transverse Myelitis Network 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 wou

Re: [TMIC] different support groups.

[Jim Lubin]

Jude,
I also identify more with the spinal cord injury quadriplegic. It was
Transverse Myelitis that caused me to became a ventilator dependent
quadriplegic, when I was in the hospital I was treated just as the other
quadriplegic who had broken their necks in a trauma. Since 2/3 of people
diagnosed with TM have some sort of recovery I don't identify much with
most people with TM, other than that is what caused my quadriplegia. In
my daily life, the only thing I can do for my self is use the computer
and operate my wheelchair. I need someone to feed me, dress me, turn me
in bed, transfer me to my wheelchair, drain my bladder, and do my bowel
program. I can not be left completely alone for more than a few minutes
in case I need my lungs suctioned or the ventilator stops working (which
has happened 3 times in the past 20 years). Most people with TM are for
the most part self-sufficient and don't have the same issues to deal
with.
Naomi,
Years ago when I saw people on the tm list asking about uti's I suggested
they check out the quad-list since the topic was discussed quite often.
Someone on the quad list complained about these people who had TM being
on that list says, "they don't belong here, they are still walking,
what do they have to complain about." I had to explain to that
person that I didn't break my neck but became a quadriplegic due to TM
and that TM is an injury to the spinal cord so all the same problems
occur depending on the level of the spinal cord affected. That person
wrote back that he had no idea and that he had more to learn.
At 10:03 AM 6/17/2009, ladyno...@aol.com wrote:
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.com
To: ladyno...@aol.com
Sent: Wed, Jun 17, 2009 4:26 am
Subject: 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 identify more with the members
of the paraplegic quadriplegic site then with the members of the TM
site.

 

Naomi

C-4 Quadriplegic, since July 2, 2005

Due to Transverse Myelitis




Jim
Lubin  

jlu...@eskimo.com
http://makoa.org/jim

disAbility Resources:
http://www.makoa.org

Re: [TMIC] Transverse Myelitis Network

[Deborah Nord Capen]

I have a membership at Costco, and at Sam's Club.  Why? Because I like one store for certain items which I can't get at the other store, and vice versa.  Should I quit one membership and stay "loyal" to only one of the stores?  Or can I go to both stores if I like? 
 
-Original Message- From: ladyno...@aol.com Sent: Jun 17, 2009 9:23 AM To: heyjude48...@aol.com, tmic-list@eskimo.com Subject: Re: [TMIC] Transverse Myelitis Network 
Jude,
It's not that I think any one site is better than the other, and is not so much about interaction, as information It's just that quadriplegics have more and different issues to deal with. There is also a site for TM quads who are vent dependent, because they have more and different issues than quads who are not vent dependence. Jim Lubin started all of the sites, I'm sure out of necessity. We're just trying to find as much information to help us as possible. Every little bit helps.
Naomi
C-4 Quadriplegic, since July 2 2005
Due to Transverse Myelitis-Original Message-From: heyjude48...@aol.comTo: ladyno...@aol.comSent: Wed, Jun 17, 2009 4:24 amSubject: Re: [TMIC] Transverse Myelitis Network







Naomi,
 
Why do you think that you get more out of one group than the other?  Is there more interaction?  More topics of interest?  
 
I still am loyal to the TM site because it is the original site that Jim started and put so much work into.  But, I am hungering for a site that has more interaction between members regarding TM. 
 
We don't seem to be getting new members like we used to so there isn't much talk about different medications, symptoms and general TM questions.
 
I know a lot about TM but don't think I will ever know everything.  So, I like to help those I can and be helped by those who know the answers to my questions.
 
Confused,
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 identify more with the members of the paraplegic quadriplegic site then with the members of the TM site.
 
NaomiC-4 Quadriplegic, since July 2, 2005Due to Transverse Myelitis


An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps!


Download the AOL Classifieds Toolbar for local deals at your fingertips.


Dell Days of Deals! June 15-24 - A New Deal Everyday! 

Debbie
dca...@earthlink.net

RE: [TMIC] Transverse Myelitis Network

[Tracey L. Black]

As a caretaker/mother of a daughter who has had TM for 4 years now; this 
saddens me to read this. I am also a member of the one Yahoo TM site b/c for me 
it seems like it involves more children than adults and I can identify more 
with their issues. Since my daughter was inflicted at the age of 11 and is now 
15 ½, I get lots of answers from the other site but also stay on this one b/c I 
want to know what the future may hold for my daughter as an adult. I know that 
we  ALL have been saddened by the passing of Pam but this should not be a time 
to bicker and a time for people to quit the site b/c they feel as though they 
are traitors for checking out another site. There have been numerous times that 
I have tried to unsubscribe and for some reason, it never works. Maybe I am 
supposed to stay on this site for another reason. I know I don't write very 
much and maybe this email will just be taken with a grain of salt. Fortunately, 
my daughter seems to have a much lighter case of TM than a lot of others on 
this site. With that in mind, I still continue to read everyone's emails b/c 
they make me feel so much more blessed that my daughter didn't get inflicted as 
badly as others although she does deal with one or two of the symptoms. I can't 
imagine what most of you feel on a daily basis with the pain, fatigue, banding, 
sweats, cold feelings etc. My daughter hasn't had any pain, other than at 
onset, and that was more of the tingling than anything. She is the typical 15 
year old and walks, with assistance through high school every day (except for 
now b/c school is over) and she still hangs out with her friends, she helps me 
around the house and she even babysits the 4 year old and 1 year old boys next 
door. She was confined to her wheelchair at one time but thanks to Dr. Kerr for 
helping us get into the Kennedy Krieger Institute for Spinal Cord Injuries, she 
has been walking for about 2 years. Time has flown by over the last 4 years 
that it is hard to remember life before TM. I hope that everyone continues to 
stay on this site b/c it is full of great information and great people that are 
willing to answer any question that is ever asked. No one judges anyone for 
asking questions. 

As Pam would say !!TIAD!!!

 

Tracey L. Black

Certified Insurance Service Representative

Hockley & O'Donnell Insurance Agency

Phone- 717-334-6741, x 29

Fax-717-334-3414

My hours:  9:00 a.m. - 5:00 p.m.

 

 

Thank you for providing information to us. Please be aware that no coverage is 
bound and no change to your insurance program is confirmed until verified by a 
licensed agent during regular business hours. If you do not hear from us within 
1 business day, please re-contact us in case your information has not been 
retained

 

From: ladyno...@aol.com [mailto:ladyno...@aol.com] 
Sent: Wednesday, June 17, 2009 1:03 PM
To: heyjude48...@aol.com; tmic-list@eskimo.com
Subject: Re: [TMIC] Transverse Myelitis Network

 

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.com
To: ladyno...@aol.com
Sent: Wed, Jun 17, 2009 4:26 am
Subject: 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 sa

RE: [TMIC] Question for people on Lyrica?

[Robert Pall]

I have been on Lyrica for at least 3 years...I started with 2 pills a day 
(150mg each) and 2 years ago I increased it to 3 pills or 450 mg per day. I 
have had TM for 12 years and have found Lyrica to be the best drug as for 
helping the banding,numbness and pins and needles. The only side effects are 
they increase my appetite and you can not drink alcohol when you are taking 
Lyrica (I still have a beer or two..but no hard liquor).
 
Rob in New Jersey



From: LadyOwl1961 [mailto:k...@frontiernet.net] 
Sent: Wednesday, June 17, 2009 12:49 PM
To: tmic-list@eskimo.com
Subject: [TMIC] Question for people on Lyrica?



On May 6th of this year I was visiting friends in Thunder Bay, Ontario, 
Canada (where I am originally from and lived until 1999) when both myself and 
the friend I was staying with  got a very bad chest cold that lasted 2 ½ weeks. 
It was actually longer but just the tired run down feeling lingered. I visited 
my family doctor in Thunder Bay on May 11th to have my prescriptions updated 
and refilled when during all of this and he reminded me about my TM symptoms 
flaring up after a very bad flu/cold as this seemed to be the trigger in my 
1st. and  2nd  bouts. I returned home to the States on May 25th. It was about 
June 1st. that I woke up at home and it was like every symptom of my TM was in 
over drive. With no health care and not knowing what else to do I called my 
doctor in Thunder Bay. He then talked to my neurologist himself and called me 
back telling me that they agreed I should increase my Lyrica gradually then 
decrease it again over the course of 2 months as my bouts seem to last 
approximately 3 weeks. I am in the middle of doing all of this right now. My 
question is that I am wondering about the increase and decrease and if you 
noticed any change in your moods? Lately for some unknown reason I am angry. 
Angry at any and everything and the least little thing can set me off (sorry 
for the read receipt thing). I am trying to figure out if this is due to the 
lyrica (a side effect is depression) or just my emotions over having another 
bout? 

Thanks

Kathy (who now feels bad about her read receipt email)

Re: [TMIC] Re: WHAT DID YOU DO???

[CANDIS KALLEY]

I am on SSDI and Medicare.  I have United Health Care through an AARP plan.   
However, due to all of my medical problems, most of the meds that I take are 
tier 2 and tier 3.  I do use the generic meds when ever possible BUT tier 2 and 
tier 3 drugs usually do not have generics and cost so very much more and 
therefore I hit the doughnut hole and have to pay 100% !  Luckily, here in FL 
we also have a state drug plan which I will be using after the I hit the 
doughnut hole.  Still the meds I already take, costs $100 to $200 per month.  



I just got a call from United Health care through their mail-order pharmacy 
after just 1 month on Forteo for $186, I've hit the the doughnut hole.  They 
are checking to see if they subscribe to the FL drug card program, and if so 
then a 3 month supply will be $210 including the needles and pens required for 
the shots.  So, there are states that do help with the drugs.  I'm not sure if 
all states do that.  I did a search and found out about the FL drug program - 
there are no requirements for income or age. 

 
Prayers and thoughts for you and yours, 

Candy K. 

- Original Message - 
From: bgunny7...@aol.com 
To: cakal...@embarqmail.com 
Sent: Wednesday, June 17, 2009 10:02:06 AM GMT -05:00 US/Canada Eastern 
Subject: Re: [TMIC] Re: WHAT DID YOU DO??? 


I don't know how old you are, but, if your 50 or older with a disability, you 
can qualify for Social Security benefits that include a prescription drug plan. 
If your 60 or more, you can join AARP, and get drugs for $2.80 generic, $6.00 
name brands. 


Download the AOL Classifieds Toolbar for local deals at your fingertips.

Re: [TMIC] Transverse Myelitis Network

[ladynotes]

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.com
To: ladyno...@aol.com
Sent: Wed, Jun 17, 2009 4:26 am
Subject: 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 identify more with the 
members of the paraplegic quadriplegic site then with the members of the TM 
site.

?

Naomi
C-4 Quadriplegic, since July 2, 2005
Due to Transverse Myelitis


An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps!










Download the AOL Classifieds Toolbar for local deals at your fingertips.

Re: [TMIC] Transverse Myelitis Network

[Grace M.]

>
>  *Hi Naomi,  *
>


>  *Very well said.  It's like that for NMO patients also.  Although we too,
> suffer from non traumatic SCI, our needs are very different than the typical
> TM patient.  Our treatments differ greatly---many of us are on heavy duty
> anti-rejection/immunosuppressant drugs, and many (Myself included.) are on
> chemotherapy agents.  We too have members who are quads, and more than a few
> are vented.  Many of them frequent other communities  and we always
> encourage that.  If a patient can find support and validation from other
> patients in the same boat at a different site, we encourage
> them.  Oftentimes, the information that they bring back to us is priceless.
> *
>


>  *Be  well,  *
>


>  *Grace*
>


>  * *
>

[TMIC] Question for people on Lyrica?

[LadyOwl1961]

On May 6th of this year I was visiting friends in Thunder Bay, Ontario, 
Canada (where I am originally from and lived until 1999) when both myself and 
the friend I was staying with  got a very bad chest cold that lasted 2 ½ weeks. 
It was actually longer but just the tired run down feeling lingered. I visited 
my family doctor in Thunder Bay on May 11th to have my prescriptions updated 
and refilled when during all of this and he reminded me about my TM symptoms 
flaring up after a very bad flu/cold as this seemed to be the trigger in my 
1st. and  2nd  bouts. I returned home to the States on May 25th. It was about 
June 1st. that I woke up at home and it was like every symptom of my TM was in 
over drive. With no health care and not knowing what else to do I called my 
doctor in Thunder Bay. He then talked to my neurologist himself and called me 
back telling me that they agreed I should increase my Lyrica gradually then 
decrease it again over the course of 2 months as my bouts seem to last 
approximately 3 weeks. I am in the middle of doing all of this right now. My 
question is that I am wondering about the increase and decrease and if you 
noticed any change in your moods? Lately for some unknown reason I am angry. 
Angry at any and everything and the least little thing can set me off (sorry 
for the read receipt thing). I am trying to figure out if this is due to the 
lyrica (a side effect is depression) or just my emotions over having another 
bout? 

Thanks

Kathy (who now feels bad about her read receipt email)

Re: [TMIC]

[Catherine]

Yes, get in that chair Jude ... go for it...live life.. that is what God and 
Pam would want you to do.  We only have one life .. and if you have the chance 
go.  Your husband loves you and wants you with him.  Catherine





From: "ladyno...@aol.com" 
To: jan...@centurytel.net; tmic-list@eskimo.com
Sent: Wednesday, June 17, 2009 9:08:23 AM
Subject: Re: [TMIC] 

Girl, GET IN THE CHAIR!  You do not want to miss out on another minute of life. 
 I wish my husband was trying to put me in the chair and take me somewhere.. .  
Anywhere!  I described to you my dilemma and I wish I were in your shoes.  You 
have been through so much and you deserve to get out and experience what life 
has to offer.  You know if Pam were here, you could hear her voice encouraging 
you to get in that chair and go wherever it is your husband wants to take you.  
He loves you so much and just wants you to be with him wherever he goes.  
Please go.  I'm sure you will not regret it.


-Original Message-
From: Janice 
To: heyjude48...@aol.com; tmic-list@eskimo.com
Sent: Tue, Jun 16, 2009 11:38 pm
Subject: Re: [TMIC] 


   Jude, how in the world could we hate you for being honest?  Your husband 
loves you very much.  If not, why
   would he come and get you to bring you home?Why would he have 
contemplated suicide being without you?
   Why would he bother to treat you so well in taking care of you?There are 
many couples that do not have sex
and they have a great partnershp and a good marriage. Also, it is NOT 
your fault you have the catheter in - so don't 
   go there.
 
   As far as getting in that chair  -  you need to do it.   You still have 
several years left and you need to make the
   most of them.   Imagine what traveling with your husband again would be 
like.   You need to do this.
   You are a great lady and have had a tough time, but from what I have read 
about you, you have always worked
   hard to be as strong as you can.   You can do this.
Janice
- Original Message - 
>From: heyjude48...@aol.com 
>To: jan...@centurytel.net ; tmic-list@eskimo.com 
>Sent: Monday, June 15, 2009 2:23 AM
>Subject: Re: [TMIC] 
>
>
>You know, it's funny (odd), but Dave and I were separated at the time I got 
>hit with TM.  I was openly dating and in fact, was visiting a "friend" in Ohio 
>when it happened.
> 
>I lived in Ohio for a year before I couldn't stand it any more and begged Dave 
>to let me come home. He finally said yes and came to get me and all of our 
>furniture and other things.
> 
>Over the years I learned how much Dave loved me, although I was certain he did 
>not.  I learned how deeply I hurt him.  He told me how he sat for hours out in 
>his "barn" on a tall ladder with a rope around his neck trying to get up the 
>nerve to jump.  When I heard this it hurt me to my very core...how could I 
>have been so awful, so mean, so cold and uncaring?
> 
>Through much counseling I learned how much anger was in me for this man.  How 
>much his cold demeanor, never talking to me, perfunctory sex life, 
>etc...affected me.  How it built up an anger in me that only hurting him back 
>would suffice.  
> 
>I know it was wrong.  I love this man more than my life.  Years before we 
>began dating I would drive by his house every day and pray to God to allow me 
>to be with Dave.  I must have prayed for three or four years before we ran 
>into each other in a laundrymat on a Saturday night.  We talked for hours, 
>decided to go out and that was that.  We were married a year later.  And in 
>spite of everything, we have recently had our 23rd anniversary.
> 
>Since I am so profoundly affected by TM, and have a foley catheter in all of 
>the time our sex life has been nil.  I feel like that's my fault. Maybe he 
>just hates me so much, he can't stand to touch me.  He says that's not true, 
>it is that he is afraid he is going to hurt me.
> 
>We are intimate in other ways, he used to get into bed with me and cuddle, but 
>hasn't done that for years.  I don't know why because he states no reason.  
>But he tells me he loves me at at least ten times a day and waits on me hand 
>and foot since I am mainly bed ridden.  He treats me like a queen and I do my 
>best to show my appreciation in all manner of ways.
> 
>So, that's probably more information than you wanted to hear, but it's the 
>truth.  It's been 8 years now of living like this and since I am working hard 
>at getting in my chair, we will soon be able to get loaded in the van and go 
>places...something he is looking forward to doing.
> 
>Now, with Pam's passing it has put a damper on both of our lives and I am 
>having trouble getting out of bed.  I need to fight it off and go on with my 
>life.
> 
>I need help from my Internet friends.  I know that my best friend would not 
>want me to live this way...to simply give up on life.  I loved Pam like a 
>sister and she loved me in return.
> 
>Please Pray

Re: [TMIC] Transverse Myelitis Network

[ladynotes]

Jude,

It's not that I think any one site is better than the other, and is not so much 
about interaction, as information It's just that quadriplegics have more and 
different issues to deal with. There is also a site for TM quads who are vent 
dependent, because they have more and different issues than quads who are not 
vent dependence. Jim Lubin started all of the sites, I'm sure out of necessity. 
We're just trying to find as much information to help us as possible. Every 
little bit helps.

Naomi

C-4 Quadriplegic, since July 2 2005

Due to Transverse Myelitis



-Original Message-
From: heyjude48...@aol.com
To: ladyno...@aol.com
Sent: Wed, Jun 17, 2009 4:24 am
Subject: Re: [TMIC] Transverse Myelitis Network









Naomi,

?

Why do you think that you get more out of one group than the other?? Is there 
more interaction?? More topics of interest?? 

?

I still am loyal to the TM site because it is the original site that Jim 
started and put so much work into.? But, I am hungering for a site that has 
more interaction between members regarding TM. 

?

We don't seem to be getting new members like we used to so there isn't much 
talk about different medications, symptoms and general TM questions.

?

I know a lot about TM but don't think I will ever know everything.? So, I like 
to help those I can and be helped by those who know the answers to my questions.

?

Confused,

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 identify more with the 
members of the paraplegic quadriplegic site then with the members of the TM 
site.

?

Naomi
C-4 Quadriplegic, since July 2, 2005
Due to Transverse Myelitis


An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps!










Download the AOL Classifieds Toolbar for local deals at your fingertips.

[TMIC] RE:SAVELLA

[DeeRERE]

HAS ANYONE EVER TAKEN OR HEARD OF SAVELLA.
PLEASE LET ME KNOW.
MARIE
**Dell Days of Deals! June 15-24 - A New Deal Everyday! 
(http://pr.atwola.com/promoclk/100126575x1222865043x1201494942/aol?redir=http:%2F%2F
ad.doubleclick.net%2Fclk%3B215692145%3B38015538%3Bh)

Re: [TMIC] Re: WHAT DID YOU DO???

[CANDIS KALLEY]

I have just been dx'd with severe Osteoporis especially of the spine.  I have 
been on Boniva for 6+ years only because I have an ileostomy and could not 
tolerate the daily or weekly meds which caused constant diarrhea.  The 
ileostomy also means that I do not absorb meds, vitamins and food normally.  
The severe Osteoporis has appearred since TM - I was on the verge of osteoprini 
(?) just a year before TM.  



My dr. has ordered Forteo for me but I am having problems getting my insurance 
to approve this.  Forteo costs about $600 a month & with insurance $200.     



I can't say enough about having your vitamin D levels checked.  Vitamin D is 
VERY important for the immune system.  I only have about 1/4 of the required 
levels although I'm taking 6,000 IU daily and 50,000 weekly let alone the daily 
3 of milk (which just goes completely trough my system in less than 10 minutes 
even with lactose enzyme), yogart, cheese, etc.  



Prayers and thoughts for you and yours, 

Candy K. 

- Original Message - 
From: "Cindy McLeroy"  
To: "Janice" , tmic-list@eskimo.com, 
jmh1...@sbcglobal.net 
Sent: Wednesday, June 17, 2009 1:37:26 AM GMT -05:00 US/Canada Eastern 
Subject: Re: [TMIC] Re: WHAT DID YOU DO??? 





Prayers and thoughts for you and yours, 

Candy K. 

- Original Message - 
From: "Cindy McLeroy"  
To: "Janice" , tmic-list@eskimo.com, 
jmh1...@sbcglobal.net 
Sent: Wednesday, June 17, 2009 1:37:26 AM GMT -05:00 US/Canada Eastern 
Subject: Re: [TMIC] Re: WHAT DID YOU DO??? 


Janice, Before I had TM (age 47 in 1992) I had severe Osteoporis so I already 
had thin bones.  Not being weight bearing for all these years doesn't help 
which is why I have to be (no should be) so careful.  I take all the 
appropriate meds, but when I do something stupid, I go all the way. 

Cindy 


- Original Message - 
From: Janice 
To: Cindy McLeroy ; tmic-list@eskimo.com ; jmh1...@sbcglobal.net 
Sent: Tuesday, June 16, 2009 8:56 PM 
Subject: Re: [TMIC] Re: WHAT DID YOU DO??? 


Cindy, 
Did you break your legs that many times since TM or during your lifetime?    
Sure sorry it happened and hope it heals quickly. 
Word of advice  -  Leave The Cleaning To The Cleaning Ladies Although I 
admit I would have tried to clean it too. 
Heal quickly, Janice 


- Original Message - 
From: Cindy McLeroy 
To: tmic-list@eskimo.com ; jmh1...@sbcglobal.net 
Sent: Tuesday, June 16, 2009 6:09 PM 
Subject: [TMIC] Re: WHAT DID YOU DO??? 


You'll be sorry you asked, it's kind of a long story. 

I had time to kill on Sat before I went to a party, all dressed and ready to 
go.  I notice that the cleaning lady didn't clean as well as I thought around 
the bottom of the toilet so I bent over forward on my wheelchair bracing myself 
with one hand on the toilet. cleaning with the other.  Apparently I pushed my 
wheelchair out from under me and slid to the floor with my right foot twisted 
almost the way around.  When I went to bed that night my leg was doing a snap, 
crackle and pop noise.  Went to the ER the next day and the doctor said, Oh, 
your leg is broken.  Duh. 

Anyhow, my frustration is dealing with the ER folks, my doctor and an Ortho.  
Seems all the Ortho's are booked.  I can't wait because I have (lucky for me) 
no sensation and the splint that is on my leg is moving around and I'm sure 
digging.  I want to avoid pressure sores.  Always something interesting with 
TM.  I think this is the fourth or fifth time I have broken one or the other of 
my legs.  Once I simply rolled over in bed and heard the crunch. 
   Cindy 


- Original Message - 
From: Jan Hargrove 
To: Cindy McLeroy ; Sent: Tuesday, June 16, 2009 11:51 AM 
Subject: Re: WHAT DID YOU DO??? 


Cindy, 
What in the world did you do to break your leg??? 
jan 

--- On Tue, 6/16/09, Cindy McLeroy < cindymcle...@socal.rr.com > wrote: 





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 the orchestra section 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

Re: [TMIC]

[lynne myers]

I sleep with a Chillow at night and it helps a great deal.  It is a gel filled 
pad for your pillow and now I dont have to keep changing pillows all night to 
find a cooler feeling one.
Lynne

--- On Tue, 6/16/09, kimr1...@bellsouth.net  wrote:


From: kimr1...@bellsouth.net 
Subject: Re: [TMIC]
To: "Janice" , "bradebi" , 
"transverse myelitis" 
Date: Tuesday, June 16, 2009, 11:45 PM




no but will give it a try
-- Original message from "Janice" : 
-- 

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


  

Re: [TMIC]

[ladynotes]

Girl, GET IN THE CHAIR!? You do not want to miss out on?another minute of 
life.? I wish my husband was trying to put me in the chair and take me 
somewhere..?.? Anywhere!? I described to you my dilemma and I wish I were in 
your shoes.? You have been through so much and you deserve to get out and 
experience what life has to offer.? You know if Pam?were here, you could hear 
her voice encouraging you to get in that chair?and?go?wherever it is your 
husband wants to take you.? He loves you so much and just wants you to be with 
him wherever he goes.? Please go.? I'm sure you will not regret it.


-Original Message-
From: Janice 
To: heyjude48...@aol.com; tmic-list@eskimo.com
Sent: Tue, Jun 16, 2009 11:38 pm
Subject: Re: [TMIC] 



?? Jude, how in the world could we hate you for being honest?? Your husband 
loves you very much.? If not, why

?? would he come and get you to bring you home Why would he have 
contemplated suicide being without you?

?? Why would he bother to treat you so well in taking care of you There are 
many couples that do not have sex

??? and they have a great partnershp and a good marriage.? ?? Also, it is NOT 
your fault you have the catheter in - so don't 

?? go there.

?

?? As far as getting in that chair? -? you need to do it.?? You still have 
several years left and you need to make the

?? most of them.?? Imagine what traveling with your husband again would be 
like.?? You need to do this.

?? You are a great lady and have had a tough time, but from what I have read 
about you, you have always worked

?? hard to be as strong as you can.?? You can do this.

??? Janice


- Original Message - 

From: heyjude48...@aol.com 

To: jan...@centurytel.net ; tmic-list@eskimo.com 

Sent: Monday, June 15, 2009 2:23 AM

Subject: Re: [TMIC] 










You know, it's funny (odd), but Dave and I were separated at the time I got hit 
with TM.? I was openly dating and in fact, was visiting a "friend" in Ohio when 
it happened.

?

I lived in Ohio for a year before I couldn't stand it any more and begged Dave 
to let me come home.?He finally said yes and came to get me and all of our 
furniture and other things.

?

Over the years I learned how much Dave loved me, although I was certain he did 
not.? I learned how deeply I hurt him.? He told me how he sat for hours out in 
his "barn"?on a tall ladder with a rope around his neck trying to get up the 
nerve to jump.? When I heard this it hurt me to my very core...how could I have 
been so awful, so mean, so cold and uncaring?

?

Through much counseling I learned how much anger was in me for this man.? How 
much his cold demeanor, never talking to me, perfunctory sex life, 
etc...affected me.? How it built up an anger in me that only hurting him back 
would suffice.? 

?

I know it was wrong.? I love this man more than my life.? Years before we began 
dating I would drive by his house every day and pray to God to allow me to be 
with Dave.? I must have prayed for three or four years before we ran into each 
other in a laundrymat on a Saturday night.? We talked for hours, decided to go 
out and that was that.? We were married a year later.? And in spite of 
everything, we have recently had our 23rd anniversary.

?

Since I am so profoundly affected by TM, and have a foley catheter in all of 
the time our sex life has been nil.? I feel like that's my fault. Maybe he just 
hates me so much, he can't stand to touch me.? He says that's not true, it is 
that he is afraid he is going to hurt me.

?

We are intimate in other ways, he used to get into bed with me and cuddle, but 
hasn't done that for years.? I don't know why because he states no reason.? But 
he tells me he loves me at at least ten times a day and waits on me hand and 
foot since I am mainly bed ridden.? He treats me like a queen and I do my best 
to show my appreciation in all manner of ways.

?

So, that's probably more information than you wanted to hear, but it's the 
truth.? It's been 8 years now of living like this and since I am working hard 
at getting in my chair, we will soon be able to get loaded in the van and go 
places...something he is looking forward to doing.

?

Now, with Pam's passing it has put a damper on both of our lives and I am 
having trouble getting out of bed.? I need to fight it off and go on with my 
life.

?

I need help from my Internet friends.? I know that my best friend would not 
want me to live this way...to simply give up on life.? I loved Pam like a 
sister and she loved me in return.

?

Please Pray for me,

Jude...please don't hate me for being honest and telling all.

?


In a message dated 6/11/2009 11:39:09 P.M. Eastern Daylight Time, 
jan...@centurytel.net writes:


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/relationsh

[TMIC] Re: [QUAD-L] financial help

[ladynotes]

Yes, I would like to know this as well.  My insurance only cover so much, and 
then im SOL.


-Original Message-
From: Hosni Al-khatib 
To: quad-list 
Sent: Tue, Jun 16, 2009 11:00 pm
Subject: [QUAD-L] financial help



Hi

 

 I am a C 4/5 quadriplegic since 2001, and I am hoping that someone in this 
list can help me.

 

I want to ask if anyone here take financial help for his rehabilitation, 
because I know that it costs a lot in USA, so I don’t think anyone can afford 
it in his own.

 

So where and how can anyone get financial help or any kind of assistant to his 
rehabilitation.

 

Thank you

God bless you

   

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

Re: [TMIC] Transverse Myelitis Network

[Heyjude48458]

I second that emotion


In a message dated 6/15/2009 9:14:50 A.M. Eastern Daylight Time,
rp...@neillsupply.com writes:

Jim:
Do you have any feedback on the new Transverse Myelitis  Network many of us
have been invited to join. What is the difference  between our present
network :"the Transverse Myelitis Internet Club" and  this one…and why was it
needed….the only explanation is it can do things  our present network cannot!
I  presently get enough info. On our site and was wondering if this is
simply overkill.
Thx
Rob in  New Jersey



**Download the AOL Classifieds Toolbar for local deals at your
fingertips.
(http://toolbar.aol.com/aolclassifieds/download.html?ncid=emlcntusdown0004)