Re: [TMIC] Get this!

Rod & Karyne Jenke (rktjenke(AT)cobweb.com.au)
Fri, 11 Jun 1999 12:50:55 +0930

Oh Doc,
If you are going to continue to make me cry with your posts, well, I'll just
keep crying!(I do that a lot anyway and it makes me feel better!)
You have said a lot of things in your posts that only us others with TM will
and do understand, I had a friend diagnosed with breastCA when I got TM and
we went through a lot at the time together, but even she now, after chemo
and being in remission for a while seems to forget what its like to be sick,
tired or just plain grumpy! I haven't found a good way to say "don't touch"
yet, but find after
a nice warm shower and a rest (on or in our lovely warm waterbed) I am able
to have a cuddle or just lay and hold hands and watch TV, this is what I
would rather do than go out anyway, as in and around where I live the powers
that be and the general population have not quite got the notion of
wheelchair access/disabled toilets etc.
I love my football (Aussie Rules)and recently we had a couple of tickets
given to us to go to a Crows game at Footy Park (headquarters in SA of
Aussie Rules) these tickets where for the members area, so I rang beforehand
to find out all the required stuff, where to park, how to get to the wheelie
area, etc etc. I had the 'blonde'(apologies to all smart blondes) of the
century on the phone and she gave me all the information she thought I
required but when we got there found that the parking area was actually on
grass!! and a good 10 minute push (in the rain) from we needed to be. Once
inside it didn't get any better as the wheelie area is
not able to be reserved (we can buy reserved wheelie and friend tickets most
other places, like the basketball, movies, concerts etc), so it was first
come first served -not a very pleasant experience (again)
I have a close group of friends now who look after me and love me for me,
and look out for me wherever we go. A couple of them are notorious for
ringing a restaurant and asking why they haven't got access etc and
demanding that they get their act together, and it has worked a couple of
times!
I suppose its like everything in life, we take the good with the bad (and
the ugly!) and luckily most of us are strong enough to take the knocks that
life gives out, and it certainly will not stop me doing the things I love
and want to do, it just doesn't make life any easier, someone said once that
its not meant to be easy but I didn't think it was this hard! Stay positive
and get it off your chest once and a while, we are listening.
Be well, love Karyne

-----Original Message-----
From: Doc <doc09(AT)fuse.net>
To: tmic <tmic-list(AT)eskimo.com>
Date: Thursday, 10 June 1999 3:26:pm
Subject: Re: [TMIC] Get this!

>Karyn:
>
>Elated to see that you have found people who seem to understand the
>complexity and limitations of TM. I went out with friends (so to speak)
>tonight and because I have both legs missing they seem to understand that I
>have physical limitations. They still have no clue as to what TM is all
>about and that there are physical limitations associated with it. God
forbid
>that I might bring up the psychological/emotional factors associated with
>TM. The struggle that we all have is evident. The fact that we have one
>another becomes more and more obvious as each day passes. How do I tell
them
>that I might pee or poop on myself and maintain my own self worth/dignity
>and respect at the same time. How do I tell the one I care about that I
>cannot walk on the road or beach for even awhile because I might fall down.
>I have no clue.. How do I say "get away" when they try to cuddle me and
the
>mere skin contact causes pain and discomfort. How does one feel and have a
>full existence when touch is not comforting and that stimulation above and
>below the waist is nothing more than touch. If all is well I can feel the
>kiss on my cheek but then all is lost. Somewhere in the higher beings grand
>plan I must be destined to experience and some how survive a real trial in
>my life. There cannot be another being regardless of their worldly or
>spiritual being who would inflict or desire that another mortal experience
>the pain, discomfort, anguish and psychological impact that those of us
with
>TM experience. There are those of us who have lost significant others
solely
>because of TM. Fairness is not even a topic that belongs in this thread. I
>JUST CAN'T DO IT !!. If they do not care enough to try to understand what
am
>I to do ??? A bunch of us didn't make it and there are a ton more who fear
>that they won't make it with their significant other or potential
>significant other because of what we HAVE (TM) and are what we are with
what
>we have.
>
>To close, all I can say is that we have one another and that as a group we
>are the only ones who can truly understand. Our significant others truly do
>their best and understand as best they can. I have told more than one
>person, live in my body for five minutes and then you will truly understand
>what it feels like to have TM. I and the world of words cannot
>explain/define what I truly feel physically and emotionally. I love them
>and all of you for being here/there or wherever in your contact with the
>plague that we call TM. Please take care of you and those who you might be
>with and take care of.
>
>Doc
>
>PS. Hope I didn't go too far but this is how I'm feeling right now.
>
>
>
>
>
>
>
>-----Original Message-----
>From: Rod & Karyne Jenke <rktjenke(AT)cobweb.com.au>
>To: Jeny Rostoni <jenyr78(AT)mindspring.com>; tmic-list(AT)eskimo.com
><tmic-list(AT)eskimo.com>
>Date: Wednesday, June 09, 1999 11:37 PM
>Subject: Re: [TMIC] Get this!
>
>
>>Hi Jeny,
>>welcome to the list, I've just caught up on all the news for the last few
>>days.
>>Since I was diagnosed with TM in late '92, I have found out who my real
>>friends are and also have found some really nice new ones as well. You
>>really don't need the grief right now, you need to direct all your
energies
>>to feeling good and getting better - put all the other out of your mind (I
>>know its easier said than done) and deal with it when you are stronger.
>Good
>>luck, be well, Love Karyne
>>
>>-----Original Message-----
>>From: Jeny Rostoni <jenyr78(AT)mindspring.com>
>>To: tmic-list(AT)eskimo.com <tmic-list(AT)eskimo.com>
>>Date: Wednesday, 9 June 1999 11:31:am
>>Subject: [TMIC] Get this!
>>
>>
>>>My ex just called and has moved back in with my best friend. Yeah... you
>>>heard it right. She was at the hospital with me the 4 days I was in and
>now
>>>they are saying that it is hard to believe that I have anything wrong,
>>>because they have no proof! Is no feeling from the belly button down and
>>not
>>>able to walk without a cane proof enough?! What kind of proof can you
give
>>>someone that doesn't believe you have anything like TM? They were saying
>>>that because I was still walking while in the hospital (with assistance)
>>and
>>>able to move my legs (no weakness) that there is really nothing wrong. I
>>>supported her AND their baby while he was moved out, now that he's back,
I
>>>have nothing wrong! What do you suggest?
>>