Thank you, Thank you, Thank you!!!!!!!!! To hear that this old bladder of
mine could finally make up it's mind to go back
to normal - after over 2 years - is really heartening. Thank you again
I do realize that it may not, but if one bladder did,
another can too! Janice
----- Original Message -----
From: L T CHERPESKI
To: [email protected] ; Amanda Diskey ; Janice
Sent: Saturday, May 09, 2009 10:09 PM
Subject: Re: [TMIC] Fw: my transverse myelitis story
Hi Janice,
I do stay dry at night, now. I have gotten over this, but I used to
"dream" that I was in the bathroom peeing, and would wake up just in time
to get to the bathroom. I went through that for several years. But,
thankfully that is also one of the things that has improved - even after 7
years! I say never give up hope.
Linda
----- Original Message -----
From: Janice
To: L T CHERPESKI ; [email protected] ; Amanda Diskey
Sent: Saturday, May 09, 2009 8:46 PM
Subject: Re: [TMIC] Fw: my transverse myelitis story
Linda
I only cath at morning and nite also, but I want to know if you stay dry
during the nite. Some nites I don't and have to use
protection. Janice
----- Original Message -----
From: L T CHERPESKI
To: Janice ; [email protected] ; Amanda Diskey
Sent: Saturday, May 09, 2009 9:07 PM
Subject: Re: [TMIC] Fw: my transverse myelitis story
Welcome Amanda. Boy, reading your TM story - well I can't believe what
you have been through. What an awful experience. But we are so glad you found
us. You'll find we are a very supportive bunch. I feel like Patti - chills
ran down my spine when I read that you could wiggle your toes! Please hang in
there, never give up. I'm so glad that you're still having physical therapy.
Can never have too much of that. Hey, I have had TM for 7 years now and have
had to self cath the entire time because I can't completely empty on my own,
and out of the blue I am now only having to cath when I get up in the morning
and before going to bed at night! And my urologist who specializes in
neurological damage said "all day for the rest of my life" - I think we should
focus on what we're still going to gain, rather than put so much emphasis on a
"time line" Many of us have continued to improve over the years, and I'm
hoping and praying that you do as well.
Good to have you with us. Keep posting so we know how you're doing.
Linda - Eagle, ID
----- Original Message -----
From: Amanda Diskey
To: Janice ; [email protected]
Sent: Wednesday, May 06, 2009 9:31 AM
Subject: Re: [TMIC] Fw: my transverse myelitis story
hey janice! thank you too for your support i am hanging in here and
trying to wait patiently!
amanda
------------------------------------------------------------------------
From: Janice <[email protected]>
To: Amanda Diskey <[email protected]>; [email protected];
[email protected]
Sent: Wednesday, May 6, 2009 10:19:38 AM
Subject: Re: [TMIC] Fw: my transverse myelitis story
It really is hard to find anything good in this nasty disease, but one
of the good things to come from this is meeting a group like this. The support
and comfort is tremendous. You also lose the "isolated" feeling of having
such a rare disease. I think the
biggest improvements come in the first 2 years, but that is not usually
the end. New improvements may be a little slower, but
they usually come. Hang in, Amanda. Janice
----- Original Message -----
From: Amanda Diskey
To: [email protected] ; [email protected]
Sent: Wednesday, May 06, 2009 9:46 AM
Subject: Re: [TMIC] Fw: my transverse myelitis story
Patti,
Thank you for your post. It is comforting to know that you were still
healing at 9 months. I don't know what will happen, but I have faith in the
Lord. I know some good will come of all this! Have a great day!
amanda
----------------------------------------------------------------------
From: "[email protected]" <[email protected]>
To: [email protected]; Amanda Diskey <[email protected]>
Sent: Wednesday, May 6, 2009 6:38:49 AM
Subject: Re: [TMIC] Fw: my transverse myelitis story
Amanda,
I have chills from reading your story and I think they started when I
read that you can wiggle your toes. I hope you continue to acquire movement
and will keep us up-to-date on your accomplishments. I was still "healing" at
nine months and pray that you are too.
Patti - Michigan
---- Amanda Diskey <[email protected]> wrote:
>
----- Forwarded Message ----
From: Amanda Diskey <[email protected]>
To: [email protected]
Sent: Tuesday, May 5, 2009 12:33:53 PM
Subject: my transverse myelitis story
Hello, I am Amanda a 30 year old single mother of two awesome kids,
and this is my story about the worst day of my life! I got up that day and
helped my boyfriend clean his daddy's house, we ate lunch when we were
finished, and I went outside for a smoke. While smoking my cigarette I started
having chest pains, and my right arm was hurting so I went back in and laid on
the couch. About an hour later, or maybe more, I decided to go to the ER in
case I was having a heart attack. They took me back immediately, but they could
find nothing wrong with me. After six hours of tests I told them the chest
pains were probably caused by my GERD (acid reflux) because it had happened to
me before, and I wanted to go on home. After I left i noticed one of my knees
buckled every time I took a step, but I didn't think much of it. I went to bed
early cause I just didn't feel good, and I woke up about 11 p.m. because my
back was on fire like it was sunburnt. There was a
> rash across my shoulders and down my spine. I was feeling really
bad, and I told my boyfriend I needed to go back to the hospital. When I went
to get out of bed I almost fell in the floor, but he caught me. I could not
stand so he had to carry me to the car along with both kids. So here we go, I
have to stop on the way and started throwing up over and over again. I finally
get to my second hospital of the day only to run tests until 6 a.m. and finally
admitted to a room where they left me lay for 12 more hours without even
monitoring me. When the neurologist finally came at 6 p.m. I was paralyzed from
the shoulders down. He said that 2 more hours I could have died! He transferred
me to ICU at another hospital and I was 3 points away on blood oxygen levels
from being put on life support. It was 2 days before I was diagnosed with TM at
C6-T3 and also T9-T10. I received 5 days of IVIG, and 10 days of solumedrol,
and an antiviral. I stayed in ICU for 8
> days, 2 days on the neuro floor, and 6 weeks of inpatient rehab. I
still go to therapy now. I got a partial recovery, my arms returned but not so
much my hands. My trunk and legs remain paralyzed but I can wiggle my toes! It
has been 9 months now and who knows what could happen! Maybe they will figure
out a cure one day!!
