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Re: support...
From: Alyson (anonymous@obgyn.net)
Thu Sep 8 13:11:35 2005
Suzanne,
Its so interesting that you brought up the 'famous people' aspect. I've
actually found myself wondering when watching TV lately "does she have
it, do any of these women have it?"
I think women's health has long been put on the back burner. I mean how
long did it take before it was OK to talk about Breast Cancer? There are
alot more resources these days, but the insurance companies and medical
world in general still don't consider it so important. I've
thought...how interesting would it be to have congressional hearings
about endo. Can't you just imagine all of the men and even our female
congress women squirming in their seats as witness after witness sits in
front of the microphone talking about heavy periods, bleeding, clotting,
rectal pain, diarrhea, bladder pain, sexual discomfort, ovaries, etc.
They would be mortified. Its not sexy to die of cancer, or AIDS, MS,
Parkinsons, but its sexy to try to save the ones that do. Again, as you
mentioned, you can see it. We had two hurricanes where I live last yar
right after I had my lap. My husband and I went to his parents house to
help clean up. They handed me a pair of gloves and pointed me to the
pile of branches I needed to pick up. Heck I looked fine, why not? I
thought I was there just to sweep or put away dishes.
I'd like to see those hearings happen. I'd like to sit in front of
those people and ask why we can't make this as much of a priority as
Diabetes, or MS. I think it would be pretty amusing.
Alyson
At Wed, 7 Sep 2005, Sudsey wrote:
>
>I think it can be so difficult for family and friends to begin to
>understand a disease that has no outward signs. When we think of other
>diseases often times there is some outward sign and more public
>awareness for things like heart disease / cancer and that promotes the
>recognition and understanding that I think alot with endo have not been
>able to recieve. You have Endometriosis and many will look crossed eyed
>as they say they have never heard about it. I think that is what makes
>it hard. Many of us can sit and name 1-2 people in our lives or
>enviroment that have had a heart attacks or even cancer. Then of course
>I got to thinking about all those nifty little things I do when in pain
>to act and appear normal. I'm like many others who put on that strong
>lady act if not so much for myself but those around me b/c I do not want
>to be that complainer or party pooper which can make others avoid you
>over.
>I can call my mother whom I love dearly and say this or that is hurting
>me so bad to have this shocked responce and more so if I say well it's
>been going on for so long. She's shocked b/c I fail to complain about
>it outside of to my husband.
>I've long thought that men need their own board to go complain on and
>perhaps share stories so they can understand this disease better from
>that male point of view. I could move a mule quicker then to get my
>husband interested in that though.
>I think men deal with pain worse then we do and I was amused how my
>husband reacted to a kidney stone as if he was on his death bed. Do not
>get me wrong here I felt horrible for him I know that pain is horrible
>but I thought hmmm could you live like that day in and day out and still
>function, have doctors deny you and worse take meds that caused more
>stones instead of helping? My husband is the kind who gets a cold and is
>in denial he has one until it's so so bad then it's like tending to a
>little boy. Ok so I've used those moment to my advantage to gain
>compasion from it. He still can not wrap his mind around there being no
>easy out no easy treatment and quickly learned how his comment just have
>my uterus out was not truely a fix all for this. This past month I was
>in shock when he wanted to know if sex would help my pain? I about blew
>a gasket. I knew he meant well but I sure did not expect that one.
>I'm not so sure what awareness is needed b/c obviously it's remained
>that closet disease for so many. I was thinking about growing up when
>did you first learn of cancer and from where as well as other diseases.
>Was it b/c some actor/ actress got on the hype over their battle with
>it? Many it's just a family member who went through it while still
>others learn through the media outlets. How much I wonder if some well
>known actress was inflicted and went very public would there be the
>awareness and then support systems gained for us through it. The Nanny
>get's breast cancer,Letterman had a bi pass, Mrs. Osborn gets colon
>cancer,ect. it's out there for all of that but not for Edno.Heck even
>depression has made it's face in the celebrity world. What actress has
>Endo anyone know of any???? I've not seen a movie on Edno either which
>is another wonderful way of getting the word out.I've seen dozen of
>cancer related movies leukemia " a walk to remember" with Mandy Moore,
>Aids got Tom Hanks in "Philidephia" There might be one but I'm not
>aware. I also wonder if since the fact is they can afford the very best
>medical treatments if that's the reason they might not be aware of so
>many going from one uninformed uneducated or with little expereince doc
>to the next. I wonder as well in comparison do those celebrity related
>disease recieve the bigger bucks b/c one it's a celebrity fighting for
>the cure and more capablitlity is there for that fund raising. Just my
>thoughts on the whole support concern.
>Hugs to All
>Suzanne
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