Sandy:
Thank you so much for responding to this email. I am a caregiver also.
Although I am a caregiver of a young woman, she will be 15 in a few
days, I try my very best to relate to everything that she is going
through. I think that this may be easier on me than the rest of the
caregivers on here b/c when Ashlee was hit with TM, she was only 11. I
am, and always will be, her mom first. My job, as a mother, is to take
care of my children, no matter what their illness or issue is. I have
been very fortunate that my daughter has not been in pain like most of
the others on here. I tribute that to her being so young when she got
TM. Ashlee has always been very independent and has always wanted to
"take care" of herself, even before TM. I offer assistance only when she
truly seems to need it (if she starts to fall, etc) or if she asks. I
don't want her to feel as if she is incapable of trying things. She is
the first one to notice if I have a headache or if I don't feel good or
if I am just having a bad day and she does her best to make sure that I
feel better b/c if I am not healthy, I can't help her if she needs it.
I guess that we have formed a huge bond by going through her TM
together, as mother and daughter, not to mention that I was with her for
31 days straight, day and night, when she was in Hershey. I am sure that
it is much different when it is husband and wife or significant other
etc b/c although we all state that we are in the marriage "in sickness
and in health", it is very hard to see our significant other in pain b/c
there isn't a damn thing we can do about it. We aren't taught to take
care of others our age, we are raised with how we should take care of
our children. I don't think it is necessarily that the other person
doesn't care about what you are going through, I think it is more the
fact that if we can't feel what you are going through, it is hard to
sympathize or to understand exactly what is being felt. It doesn't mean
that we don't care. We just may not know how to show that we do care and
that all of the pain that you are all suffering really affects us, but
probably more internally (in our heart) than anything else. Every time I
see my daughter suffer with not being able to get around the way she
used to, it weighs heavy on my heart and soul. 
Just my 2 cents!
 
Tracey L. Black
Certified Insurance Service Representative
Hockley & O'Donnell Insurance Agency
P.O. Box 3039
132 Buford Avenue
Gettysburg, PA 17325
Phone - 717-334-6741, x 29
Fax - 717-334-3414
 

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________________________________

From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Thursday, November 20, 2008 1:08 PM
To: [EMAIL PROTECTED]; [email protected]
Subject: Re: [TMIC] Anybody else been there?


First off, Jude suffers so much and what she wrote is so selfLESS.   She
is always thinking of someone else.   We love you Jude!
 
As a caregiver I will put my 2 cents in.   I SO sympathize with the
daily pain that goes with TM.  I KNOW, but I don't FEEL the pain.  I
know it because Terry is so very articulate about it, and it pains me
emotionally to see such horrific pain.   I think all of you that know me
and how I react to him and TM.   
 
With that said, this is what we need occasionally:  Just need a little
sympathy and for you to tell us that you are sorry we are in pain.  We
just need a little validation that our pain still matters.  Pain is
relevant to each individual.   We can't take that away.  UNLESS you live
with a chronic complainer, of course!  I try not to complain because my
pain, (2 or 3 partially and 2 complete herniated discs and rheumatoid
arthritis), is minimal relative to Terry's.  But it is MY pain and it
does hurt at times.   So, when those of us that complain minimally, give
us a minute, tell us your sorry for our pain, and wait for a little bit
if you need sympathy for your pain.  A few short, sweet words go a long
way! 
 
Sandy



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