Re: [TMIC] weaning off of Tyenol?

2009-06-24 Thread Kevin Wolfthal


Trudy,
You shoudn't feel that way.  What's important is how you live your life 
and treat others. 
The grass always looks greener..


Billy Joel was cool, as you can imagine.  He has a great sense of humor. :)

Be well,
Kevin








Trudy Ogilvie wrote:

Kevin,
I'm begining to feel like a nobody on this list!  First we find out 
Gunny was the drummer for the Edsels!!... Now Kevin
is a photog who actually met the boss  not only met him but 
photographed him  what was he like?. I would guess
awesome!  
Have a good one! 
blessings   
 Trudy
Thanks for the encouragement Kevin.I have now been off Cymbalta 
for about 5 days!  Of course my husband has been missing for 
awhile  :)  I'm sure he'll come out of hiding soon 

On Tue, Jun 23, 2009 at 9:43 AM, Kevin Wolfthal 
wolft...@optonline.net mailto:wolft...@optonline.net wrote:


Trudy,

Good luck weaning off the Cymbalta. I couldn't handle the side
effects of Cymbalta
or Lyrica. Terrible digestive problems.

I got to meet Billy Joel with his wife (at the time) Christie
Brinkley and daughter
Alexa. I photographed them and did a family picture album for
them. Small world. :)

All the best,
Kevin





Trudy Ogilvie wrote:

Kevin,
I have two sons 29  33  May I send you their addresses!
 Actually they are very good to me...
I slowly weaned off Cymbalta... but since it comes in various
dosages I could do that easily...
90mg,  60mg,  30mg... It definitely helped with my pain but
since being diagnosed with MS
I would like to try a drug LDN - low dose naltraxone. Before
trying tho I'd like to get off of some of my meds.
Make sense? Still holding on to Lyrica.  But now I will see if
I do get depressed,  the Cymbalta was helping with
that also. I was originally on it for pain.
Trudy   ( who is not far from where Billy Joel grew up in N.Y.)
Sort of nice not being home... I can sit and read and answer
all my e-mails... take my time and enjoy!


On Fri, Jun 19, 2009 at 9:30 PM, Kevin Wolfthal
wolft...@optonline.net mailto:wolft...@optonline.net
mailto:wolft...@optonline.net
mailto:wolft...@optonline.net wrote:


   Hi all,

   Because I haven't been able to get my pain treated
properly, I've
   been taking
   Tylenol Extra Strength w/Acetaminophen for a long time.  I
don't
   take it every
   day, but regularly.  I take the bare minimum dose, usually
no more
   than one a
   day.  I have not had liver probems, but recently, new warnings
   have come out
   about long term use of acetaminophen.  So I am cutting my usage
   down.  Just
   wondering if there is a proper 'weaning off' of meds like
Tylenol?
I tried
   going cold turkey, but that didn't work.  I will ask my doc
about
   this also,
   just wondered if there's a basic weaning off rule.

   Thanks,
   Kevin

   PS: My Mom turned 86 today!  Amazing lady!  I made her some
Josh
   Groban,
   Michael Buble, and Billy Joel cd's, and gave her flowers.  :)








[TMIC] Re: (TMIC) Sex.

2009-06-24 Thread Grace M.
*I can't believe that I am going to reply to this, as it's an issue that I
just try hard to avoid, but. okay, so here goes.  During my first NMO
hit, I lost all feeling *there*.  At first I was hopeful that it would
slowly come back, but my second bad hit sealed the deal.  I can remember
lying in my hospital bed trying to get up the nerve to speak with my doc
about it.  Finally one day I mentioned it in passing, but didn't really
press the matter---I was too embarrassed.  Later that night, one of my neuro
nurses came in to sit and talk with me about the disease, as I was her first
NMO patient.  We talked a lot about nerves and nerve damage, and as I was
very savvy re: the implications of having relapsing NMO, we spoke freely.
(She's amazing, and I've since had her as my nurse in the neuro ward, many
times.)  Finally, I just took a big swallow and blurted it out.  She told me
the truth, that in my case it was unlikely that feeling would return, but
that one should still keep hoping that one day there would be some increase
in sensation.  She was correct---I have been numb from my sensory level
downwards since 2005.  Most of my body still feels as if it has been shot up
with Novocaine.  *
**
*Anyways, I was shell shocked and actually mourned the loss.  To lose
something that is so integral to one's life, is a violation of sorts.  It
was bad enough that I had no control over my other bodily functions, but the
loss of physical sexuality was adding insult to injury.  I felt as if I had
lost my *person-hood*, and had suddenly become androgynous.  I still fight
those feelings, and yes, sometimes I still cry about it.  Sexual contact
offers an intimacy like no other.  Some of us are more sexual than others,
and the loss can often be the cruelest cut of all.  *
**
*These days I try hard not to ever even think about it.  Whenever I do, I
become extremely angry at what I perceive to be the unfairness of it all,
and I lose sight of what I do still have.  I should be very grateful for
every day that I draw a breath---unfortunately, sometimes the negative
feelings get the better of me.  For me, it's been a tough loss to deal with.
*
**
*Okay, signing off before I totally embarrass myself.*
**
*Grace   *


[TMIC] PBS Documentary Cody

2009-06-24 Thread lynne myers
For those of you who dont get Readers Digest there is a short article in there 
about Cody Unser, a 22 year old who was 12 when she got TM. The article is 
titled Best Plunge and is on page 81 of Julys Readers Digest. PBS is going to 
be airing a documentary about her in July. Documentary is called Cody. She is 
the daughter of race car driver Al Unser Jr. Should be interesting to watch. I 
havent been able to find dates of airing yet, but if anyone does please post 
and let me know. I know they will be different for different time zones.
Lynne



  

[TMIC] Short update on Jim 6/24

2009-06-24 Thread CJBJWB
Jim is doing a bit better, but I will be really feel better when he is on  
his way to the pulmonary fixing place. He has been accepted there but they 
do  not have a bed as yet. We have heard good reports from there and believe 
they  will be able to wean him off of the ventilator there. It is in 
Kalamazoo and so  only 15 min from Cindy and Eric and our 4 little sunshines. I 
will stay nights  at their  house and will love it. Keep the prayers flowing. 
Love  carol  ps Jodi and Dave will be coming as well.  Together our family  
can keep Jim working towards health,
**Huge Savings on Popular Laptops only at Dell.com. Shop Now! 
(http://pr.atwola.com/promoclk/100126575x1221900667x1201409530/aol?redir=http:
%2F%2Fad.doubleclick.net%2Fclk%3B215910242%3B38350777%3Bf)


Re: [TMIC] Short update on Jim 6/24

2009-06-24 Thread jrushton
The prayers will still be coming and I'm so happy that you get to be with
your family, bless your heart..Jeanne

---Original Message---
 
From: cjb...@aol.com
Date: 6/24/2009 9:29:55 AM
To: cjb...@aol.com;  tmic-list@eskimo.com
Subject: [TMIC] Short update on Jim 6/24
 
Jim is doing a bit better, but I will be really feel better when he is on
his way to the pulmonary fixing place. He has been accepted there but they
do not have a bed as yet. We have heard good reports from there and believe
they will be able to wean him off of the ventilator there. It is in
Kalamazoo and so only 15 min from Cindy and Eric and our 4 little sunshines.
I will stay nights at their  house and will love it. Keep the prayers
flowing. Love carol  ps Jodi and Dave will be coming as well.  Together our
family can keep Jim working towards health,



Huge Savings on Popular Laptops only at Dell.com. Shop Now!
 frog_branch2.gif

Re: [TMIC] PBS Documentary Cody

2009-06-24 Thread jrushton
 You can find a lot of info on her on the Internet.  She is a joy for all of
us!!  jeanne
 
---Original Message---
 
From: lynne myers
Date: 6/24/2009 8:08:22 AM
To: tmic
Subject: [TMIC] PBS Documentary Cody
 
For those of you who dont get Readers Digest there is a short article in
there about Cody Unser, a 22 year old who was 12 when she got TM. The
article is titled Best Plunge and is on page 81 of Julys Readers Digest. PBS
is going to be airing a documentary about her in July. Documentary is called
Cody. She is the daughter of race car driver Al Unser Jr. Should be
interesting to watch. I havent been able to find dates of airing yet, but if
anyone does please post and let me know. I know they will be different for
different time zones.
Lynne


 01_tile.jpg01_side.gif

Re: [TMIC] Re: (TMIC) Sex.

2009-06-24 Thread jrushton
Oh, Gracie, don't be embarrassed.  We can talk about anything on here and
get very up close and personal and no one should be offended because we are
all part of one and that is TM.  If you need to ask questions, ask.  If you
have a worry, share it with us.  If you want to cry, we'll cry with you.  If
you want to talk about sex, hey, we'll be right there to talk about it with
you!  Just remember that we are a family of friends.  Jeanne

---Original Message---
 
From: Grace M.
Date: 6/24/2009 5:47:49 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Re: (TMIC) Sex.
 
I can't believe that I am going to reply to this, as it's an issue that I
just try hard to avoid, but. okay, so here goes.  During my first NMO
hit, I lost all feeling *there*.  At first I was hopeful that it would
slowly come back, but my second bad hit sealed the deal.  I can remember
lying in my hospital bed trying to get up the nerve to speak with my doc
about it.  Finally one day I mentioned it in passing, but didn't really
press the matter---I was too embarrassed.  Later that night, one of my neuro
nurses came in to sit and talk with me about the disease, as I was her first
NMO patient.  We talked a lot about nerves and nerve damage, and as I was
very savvy re: the implications of having relapsing NMO, we spoke freely. 
(She's amazing, and I've since had her as my nurse in the neuro ward, many
times.)  Finally, I just took a big swallow and blurted it out.  She told me
the truth, that in my case it was unlikely that feeling would return, but
that one should still keep hoping that one day there would be some increase
in sensation.  She was correct---I have been numb from my sensory level
downwards since 2005.  Most of my body still feels as if it has been shot up
with Novocaine.  
 
Anyways, I was shell shocked and actually mourned the loss.  To lose
something that is so integral to one's life, is a violation of sorts.  It
was bad enough that I had no control over my other bodily functions, but the
loss of physical sexuality was adding insult to injury.  I felt as if I had
lost my *person-hood*, and had suddenly become androgynous.  I still fight
those feelings, and yes, sometimes I still cry about it.  Sexual contact
offers an intimacy like no other.  Some of us are more sexual than others,
and the loss can often be the cruelest cut of all.  
 
These days I try hard not to ever even think about it.  Whenever I do, I
become extremely angry at what I perceive to be the unfairness of it all,
and I lose sight of what I do still have.  I should be very grateful for
every day that I draw a breath---unfortunately, sometimes the negative
feelings get the better of me.  For me, it's been a tough loss to deal with.
 
Okay, signing off before I totally embarrass myself.
 
Grace   
 rosy_hint.gif

Fw: [TMIC] Short update on Jim 6/24

2009-06-24 Thread Catherine

Carol and Jim,Will keep praying for you,and a bed to become open and good health soon.CatherineFrom: "cjb...@aol.com" cjb...@aol.comTo: cjb...@aol.com; tmic-list@eskimo.comSent: Wednesday, June 24, 2009 10:28:06 AMSubject: [TMIC] Short update on Jim 6/24Jim is doing a bit better, but I will be really feel better when he is onhis way to the pulmonary fixing place. He has been accepted there but they donot have a bed as yet. We have heard good reports from there and believe theywill be able to wean him off of the ventilator there. It is in Kalamazoo and soonly 15 min from Cindy and Eric and our 4 little sunshines. I will stay
 nightsat their house and will love it. Keep the prayers flowing. Lovecarol ps Jodi and Dave will be coming as well. Together our familycan keep Jim working towards health,Huge Savings on Popular Laptops only at Dell.com. Shop Now!  



  



  

[TMIC] RE: tmic-digest Digest V2009 #608

2009-06-24 Thread marieke dufresne

I wasn't going to reply to this either, but I have lost most of my feeling down 
*there* as well. I was 28 when it happened and do feel cheated out of having a 
normal sexual relationship with any guy now. The boyfriend I had at the time 
stuck by me but after a year he gave up on the relationship, in part (I think) 
because I could not and did not want to have a sexual relationship to that 
extent. He did not understand how much damage TM had caused and was not 
willing to wait for me to be ready. We broke up and at the time I was upset 
but looking back I realized that he was immature and not worth being sad over.
I am still mostly numb there and cannot reach orgasm so sex is frustrating to 
say the least.
I am not sure I will ever find a guy who is willing to understand, I hope so. I 
am 33 now and don't want to be alone my whole life...

Marieke TM@ T1 since March 2004 (incomplete paraplegic)




--Forwarded Message Attachment--
Date: Wed, 24 Jun 2009 06:47:33 -0400
From: grace...@gmail.com
To: tmic-list@eskimo.com
Subject: [TMIC] Re: (TMIC) Sex.

I can't believe that I am going to reply to this, as it's an issue that I just 
try hard to avoid, but. okay, so here goes.  During my first NMO hit, I 
lost all feeling *there*.  At first I was hopeful that it would slowly come 
back, but my second bad hit sealed the deal.  I can remember lying in my 
hospital bed trying to get up the nerve to speak with my doc about it.  Finally 
one day I mentioned it in passing, but didn't really press the matter---I was 
too embarrassed.  Later that night, one of my neuro nurses came in to sit and 
talk with me about the disease, as I was her first NMO patient.  We talked a 
lot about nerves and nerve damage, and as I was very savvy re: the implications 
of having relapsing NMO, we spoke freely.  (She's amazing, and I've since had 
her as my nurse in the neuro ward, many times.)  Finally, I just took a big 
swallow and blurted it out.  She told me the truth, that in my case it was 
unlikely that feeling would return, but that one should still keep hoping that 
one day there would be some increase in sensation.  She was correct---I have 
been numb from my sensory level downwards since 2005.  Most of my body still 
feels as if it has been shot up with Novocaine.  

 
Anyways, I was shell shocked and actually mourned the loss.  To lose something 
that is so integral to one's life, is a violation of sorts.  It was bad enough 
that I had no control over my other bodily functions, but the loss of physical 
sexuality was adding insult to injury.  I felt as if I had lost my 
*person-hood*, and had suddenly become androgynous.  I still fight those 
feelings, and yes, sometimes I still cry about it.  Sexual contact offers an 
intimacy like no other.  Some of us are more sexual than others, and the loss 
can often be the cruelest cut of all.  

 
These days I try hard not to ever even think about it.  Whenever I do, I become 
extremely angry at what I perceive to be the unfairness of it all, and I lose 
sight of what I do still have.  I should be very grateful for every day that I 
draw a breath---unfortunately, sometimes the negative feelings get the better 
of me.  For me, it's been a tough loss to deal with.

 
Okay, signing off before I totally embarrass myself.
 
Grace   


--Forwarded Message Attachment--
Date: Wed, 24 Jun 2009 06:08:04 -0700
From: lynnemye...@yahoo.com
To: tmic-list@eskimo.com
Subject: [TMIC] PBS Documentary Cody

For those of you who dont get Readers Digest there is a short article in there 
about Cody Unser, a 22 year old who was 12 when she got TM. The article is 
titled Best Plunge and is on page 81 of Julys Readers Digest. PBS is going to 
be airing a documentary about her in July. Documentary is called Cody. She is 
the daughter of race car driver Al Unser Jr. Should be interesting to watch. I 
havent been able to find dates of airing yet, but if anyone does please post 
and let me know. I know they will be different for different time zones.
Lynne





  

--Forwarded Message Attachment--
Date: Wed, 24 Jun 2009 10:28:06 -0400
From: cjb...@aol.com
To: cjb...@aol.com; tmic-list@eskimo.com
Subject: [TMIC] Short update on Jim 6/24








Jim is doing a bit better, but I will be really feel better when he is on 
his way to the pulmonary fixing place. He has been accepted there but they do 
not have a bed as yet. We have heard good reports from there and believe they 
will be able to wean him off of the ventilator there. It is in Kalamazoo and so 
only 15 min from Cindy and Eric and our 4 little sunshines. I will stay nights 
at their  house and will love it. Keep the prayers flowing. Love 
carol  ps Jodi and Dave will be coming as well.  Together our family 
can keep Jim working towards health,
 Huge Savings on Popular Laptops only at Dell.com. Shop Now!


--Forwarded Message Attachment--
Date: Wed, 24 Jun 2009 09:23:27 -0500
From: jrush...@columbiaenergyllc.com
To: cjb...@aol.com

Re: [TMIC] Re: (TMIC) Sex.

2009-06-24 Thread jrushton
Great note, Randy...

---Original Message---
 
From: rj_ran...@yahoo.com
Date: 6/24/2009 1:45:09 PM
To: jrushton;  Grace M.
Subject: Re: [TMIC] Re: (TMIC) Sex.
 
Its not a taboo subject. I was engaged to be married when my second episode
hit. The wedding was going to be the end of june and I had an event in feb
and another in april. I think that the marriage plans were doomed after the
feb relapse because the TM impacted the urinary tract and prostrate. Things
went down hill from there and the wed was pushed off and finally we ended it
 She had already found another bow anyway and I was lucky to have found the
truth out before me tied the not. So yes the subject is delicate ITS NOT a
facebook topic lol but here it is appropriate because as biological beings
(Maslov's heiharcy -spelling) that's just as much of who we are as eating,
walking and socializing. I think studies will prove me right but healthy
married people live longer than single and its more than just sharing a
house or income that keeps people going. 
Sent from my Verizon Wireless BlackBerry


From: jrushton 
Date: Wed, 24 Jun 2009 09:30:34 -0500 (Central Daylight Time)
To: Grace M.grace...@gmail.com
Subject: Re: [TMIC] Re: (TMIC) Sex.

Oh, Gracie, don't be embarrassed.  We can talk about anything on here and
get very up close and personal and no one should be offended because we are
all part of one and that is TM.  If you need to ask questions, ask.  If you
have a worry, share it with us.  If you want to cry, we'll cry with you.  If
you want to talk about sex, hey, we'll be right there to talk about it with
you!  Just remember that we are a family of friends.  Jeanne
 
---Original Message---
 
From: Grace M.
Date: 6/24/2009 5:47:49 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Re: (TMIC) Sex.
 
I can't believe that I am going to reply to this, as it's an issue that I
just try hard to avoid, but. okay, so here goes.  During my first NMO
hit, I lost all feeling *there*.  At first I was hopeful that it would
slowly come back, but my second bad hit sealed the deal.  I can remember
lying in my hospital bed trying to get up the nerve to speak with my doc
about it.  Finally one day I mentioned it in passing, but didn't really
press the matter---I was too embarrassed.  Later that night, one of my neuro
nurses came in to sit and talk with me about the disease, as I was her first
NMO patient.  We talked a lot about nerves and nerve damage, and as I was
very savvy re: the implications of having relapsing NMO, we spoke freely. 
(She's amazing, and I've since had her as my nurse in the neuro ward, many
times.)  Finally, I just took a big swallow and blurted it out.  She told me
the truth, that in my case it was unlikely that feeling would return, but
that one should still keep hoping that one day there would be some increase
in sensation.  She was correct---I have been numb from my sensory level
downwards since 2005.  Most of my body still feels as if it has been shot up
with Novocaine.  
 
Anyways, I was shell shocked and actually mourned the loss.  To lose
something that is so integral to one's life, is a violation of sorts.  It
was bad enough that I had no control over my other bodily functions, but the
loss of physical sexuality was adding insult to injury.  I felt as if I had
lost my *person-hood*, and had suddenly become androgynous.  I still fight
those feelings, and yes, sometimes I still cry about it.  Sexual contact
offers an intimacy like no other.  Some of us are more sexual than others,
and the loss can often be the cruelest cut of all.  
 
These days I try hard not to ever even think about it.  Whenever I do, I
become extremely angry at what I perceive to be the unfairness of it all,
and I lose sight of what I do still have.  I should be very grateful for
every day that I draw a breath---unfortunately, sometimes the negative
feelings get the better of me.  For me, it's been a tough loss to deal with.
 
Okay, signing off before I totally embarrass myself.
 
Grace   
 



 rosy_hint.gif

[TMIC] Artist w TM in New York times

2009-06-24 Thread Akua
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=csehttp://www.nytimes.com/2009/06/21/arts/design/21sont.html?_r=1scp=1sq=shonibarest=cse



--

[TMIC] Facebook Page

2009-06-24 Thread Akua

I'm digging Facebook--- what about creating a fan page.
--



[TMIC] Facebook Page

2009-06-24 Thread Akua

Sorry-- all i had to do was look!
--



Re: [TMIC] Short update on Jim 6/24

2009-06-24 Thread Janice
Think how much better he is doing than 2 weeks ago!   Hang in there and we 
will too.   janice
  - Original Message - 
  From: cjb...@aol.com 
  To: cjb...@aol.com ; tmic-list@eskimo.com 
  Sent: Wednesday, June 24, 2009 9:28 AM
  Subject: [TMIC] Short update on Jim 6/24


  Jim is doing a bit better, but I will be really feel better when he is on his 
way to the pulmonary fixing place. He has been accepted there but they do not 
have a bed as yet. We have heard good reports from there and believe they will 
be able to wean him off of the ventilator there. It is in Kalamazoo and so only 
15 min from Cindy and Eric and our 4 little sunshines. I will stay nights at 
their  house and will love it. Keep the prayers flowing. Love carol  ps Jodi 
and Dave will be coming as well.  Together our family can keep Jim working 
towards health,


--
  Huge Savings on Popular Laptops only at Dell.com. Shop Now!

[TMIC] ABC - Health Care

2009-06-24 Thread CANDIS KALLEY


I hope everyone is watching ABC - Pres Obama/ABC discussion on health care now 
and at 11:30 nightline.


Prayers and thoughts for you and yours,

Candy K.



RE: [TMIC] ABC - Health Care

2009-06-24 Thread C E

Yes, I watched it.



Carol  in Addison, IL
 
 


 

 Date: Wed, 24 Jun 2009 22:56:40 -0400
 From: cakal...@embarqmail.com
 To: tmic-list@eskimo.com
 Subject: [TMIC] ABC - Health Care
 
 
 
 I hope everyone is watching ABC - Pres Obama/ABC discussion on health care 
 now and at 11:30 nightline.
 
 
 Prayers and thoughts for you and yours,
 
 Candy K.
 

_
Microsoft brings you a new way to search the web.  Try  Bing™ now
http://www.bing.com?form=MFEHPGpubl=WLHMTAGcrea=TEXT_MFEHPG_Core_tagline_try_bing_1x1

Re: [TMIC] RE: tmic-digest Digest V2009 #608

2009-06-24 Thread Janice
   These have been really insightful responses to a very personal and important 
part of our lives.   I keep thinking of
the phrase when one window closes, another opens. If someone gave me 
a choice of losing my life or losing
my sexual abililty, you know which one I would pick.We just need to 
start pointing ourselves in another
direction.   I know, easier said than done.   But, I have dealt with this 
damn disease for over 2 years now and
refuse to let it take anymore from me.  Hang in there TM family. we 
can get past this.  

TIADJanice
  - Original Message - 
  From: marieke dufresne 
  To: tmic-list@eskimo.com 
  Sent: Wednesday, June 24, 2009 12:04 PM
  Subject: [TMIC] RE: tmic-digest Digest V2009 #608


  I wasn't going to reply to this either, but I have lost most of my feeling 
down *there* as well. I was 28 when it happened and do feel cheated out of 
having a normal sexual relationship with any guy now. The boyfriend I had at 
the time stuck by me but after a year he gave up on the relationship, in part 
(I think) because I could not and did not want to have a sexual relationship 
to that extent. He did not understand how much damage TM had caused and was 
not willing to wait for me to be ready. We broke up and at the time I was 
upset but looking back I realized that he was immature and not worth being sad 
over.
  I am still mostly numb there and cannot reach orgasm so sex is frustrating to 
say the least.
  I am not sure I will ever find a guy who is willing to understand, I hope so. 
I am 33 now and don't want to be alone my whole life...

  Marieke TM@ T1 since March 2004 (incomplete paraplegic)



--


  --Forwarded Message Attachment--
  Date: Wed, 24 Jun 2009 06:47:33 -0400
  From: grace...@gmail.com
  To: tmic-list@eskimo.com
  Subject: [TMIC] Re: (TMIC) Sex.


  I can't believe that I am going to reply to this, as it's an issue that I 
just try hard to avoid, but. okay, so here goes.  During my first NMO hit, 
I lost all feeling *there*.  At first I was hopeful that it would slowly come 
back, but my second bad hit sealed the deal.  I can remember lying in my 
hospital bed trying to get up the nerve to speak with my doc about it.  Finally 
one day I mentioned it in passing, but didn't really press the matter---I was 
too embarrassed.  Later that night, one of my neuro nurses came in to sit and 
talk with me about the disease, as I was her first NMO patient.  We talked a 
lot about nerves and nerve damage, and as I was very savvy re: the implications 
of having relapsing NMO, we spoke freely.  (She's amazing, and I've since had 
her as my nurse in the neuro ward, many times.)  Finally, I just took a big 
swallow and blurted it out.  She told me the truth, that in my case it was 
unlikely that feeling would return, but that one should still keep hoping that 
one day there would be some increase in sensation.  She was correct---I have 
been numb from my sensory level downwards since 2005.  Most of my body still 
feels as if it has been shot up with Novocaine.  

  Anyways, I was shell shocked and actually mourned the loss.  To lose 
something that is so integral to one's life, is a violation of sorts.  It was 
bad enough that I had no control over my other bodily functions, but the loss 
of physical sexuality was adding insult to injury.  I felt as if I had lost my 
*person-hood*, and had suddenly become androgynous.  I still fight those 
feelings, and yes, sometimes I still cry about it.  Sexual contact offers an 
intimacy like no other.  Some of us are more sexual than others, and the loss 
can often be the cruelest cut of all.  

  These days I try hard not to ever even think about it.  Whenever I do, I 
become extremely angry at what I perceive to be the unfairness of it all, and I 
lose sight of what I do still have.  I should be very grateful for every day 
that I draw a breath---unfortunately, sometimes the negative feelings get the 
better of me.  For me, it's been a tough loss to deal with.

  Okay, signing off before I totally embarrass myself.

  Grace   


  --Forwarded Message Attachment--
  Date: Wed, 24 Jun 2009 06:08:04 -0700
  From: lynnemye...@yahoo.com
  To: tmic-list@eskimo.com
  Subject: [TMIC] PBS Documentary Cody

For those of you who dont get Readers Digest there is a short article 
in there about Cody Unser, a 22 year old who was 12 when she got TM. The 
article is titled Best Plunge and is on page 81 of Julys Readers Digest. PBS is 
going to be airing a documentary about her in July. Documentary is called Cody. 
She is the daughter of race car driver Al Unser Jr. Should be interesting to 
watch. I havent been able to find dates of airing yet, but if anyone does 
please post and let me know. I know they will be different for different time 
zones.
Lynne 



  --Forwarded Message 

Re: [TMIC] Short update on Jim 6/24

2009-06-24 Thread L T CHERPESKI
So good to hear that Jim is a bit better.  We'll just need to pray that a bed 
becomes available and that these good doctors wean Jim off the ventilator and 
he is healed. 

Carol, calling your grandchildren your 4 little sunshines was so sweet - it put 
a great big smile on my face!

Stopped just now and prayed for Jim, you, and all of your family and will 
continue to keep all of you in my thoughts and prayers.  The bed will be there 
and much brighter days are on the horizon. Give Jim a gentle hug and please 
keep us updated.

love,
Linda
  - Original Message - 
  From: cjb...@aol.commailto:cjb...@aol.com 
  To: cjb...@aol.commailto:cjb...@aol.com ; 
tmic-list@eskimo.commailto:tmic-list@eskimo.com 
  Sent: Wednesday, June 24, 2009 8:28 AM
  Subject: [TMIC] Short update on Jim 6/24


  Jim is doing a bit better, but I will be really feel better when he is on his 
way to the pulmonary fixing place. He has been accepted there but they do not 
have a bed as yet. We have heard good reports from there and believe they will 
be able to wean him off of the ventilator there. It is in Kalamazoo and so only 
15 min from Cindy and Eric and our 4 little sunshines. I will stay nights at 
their  house and will love it. Keep the prayers flowing. Love carol  ps Jodi 
and Dave will be coming as well.  Together our family can keep Jim working 
towards health,


--
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