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.
TIAD Janice
----- Original Message -----
From: marieke dufresne
To: [email protected]
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)
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--Forwarded Message Attachment--
Date: Wed, 24 Jun 2009 06:47:33 -0400
From: [email protected]
To: [email protected]
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: [email protected]
To: [email protected]
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: [email protected]
To: [email protected]; [email protected]
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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--Forwarded Message Attachment--
Date: Wed, 24 Jun 2009 09:23:27 -0500
From: [email protected]
To: [email protected]
Subject: Re: [TMIC] Short update on Jim 6/24
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: [email protected]
Date: 6/24/2009 9:29:55 AM
To: [email protected]; [email protected]
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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------------------------------------------------------------------------------
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