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Re: PLY - Special sites/forums for SEVERE PCOS
From: Monica (anonymous@obgyn.net)
Mon, 31 Jul 2000 11:32:04 -0500 (CDT)
Wow, Barbara, you are truly a beautiful person! God Bless You! :} Monica
At Sun, 30 Jul 2000, anonymous@obgyn.net wrote:
>
>Jennifer - your post sounded like me!!!
>
>Second, I too went thru 11 years of IF treatment and don't talk much
>about IF issues now. I don't want to scare anyone with the trauma and
>pain I endured to bring my twins here at age 40 or the horrible time I
>had after their birth.
>
>I think "severity" is how you personally, mentally perceive your
>condition. Now, before I go on what I am going to say IN NO WAY
>minimizes anyone else's suffering or anxiety. So here goes.....
>
>First I have had PCOS since I was 9 years old. The hair, the hard
>bleeding, the pain, ect ect ect. Sometimes when I come on a list and
>see someone who appears to be traumatized by having PCOS for 6months or
>6 years. Me, I have been riding this bronco for 34+ years. It
>completely ruined my childhood, destroyed any chance at a normal
>adolescence. I was beaten, singled out, astrocized, denied scholarships,
>and more because of the way I looked or acted due to PCOS. I was
>misdiagnosed, mistreated, misunderstood and desperately lonely. I
>thought I was the only person God was "punishing." It took years of
>therapy and hard work and deep thinking on my part. I got very in touch
>with my spiritual nature and worked hard to reclaim the shred of self
>esteem I had left. All this while weathering the tornado effect PCOS
>was having on my life. I look at some posts and I can barely
>answer.....
>
>Do I have severe PCOS? I guess by some people's standards I do. I also
>developed CFIDS and Fibromyalgia about 5 years ago. The first 2 years
>of that illness left me wheelchair or bed bound at times. I prayed for
>death. But on the boards there was too much "I am sicker than you"
>going on so I stopped posting there. When I was TTC I felt, at that
>time, that if I did not have children my life would be worthless. I was
>finally successfyl after many years, tremendous pain and personal
>anguish...but who know what would have happened had I not been. Now, I
>don't even like to think about it.
>
>Illness severity is very personal and often has to do with your own
>ability to handle crisis. Coping with an illness is hard. I cope with
>a number of them and yet, I am still standing, still helping. To me, my
>PCOS may be physically severe but I try very hard to minimize the effect
>it has on who I am as person. To delete it totally would be
>impossible. But if you are anyone has a hard time coping or feels
>completely disabled personally by PCOS counseling can help (I know a
>great therapist in NYC, btw) but really it is impossible to compare your
>degree of illness to anyone elses. While their symptoms may not be as
>severe, the way in which they handle it may be more fragile than yours.
>
>I have been where you are. If you are willing to keep walking through
>that tunnel, there is emotional light at the end. And medical help is
>finally coming around for us. There may be no cure but there will be
>better management. I simply can't lay down and die, and I won't. After
>everything I have been through I simply can't let PCOS win. And I
>won't.
>
>My 2 1/2 cents,
>Barbara Camwell Ness in NYC
>PCOS since 1966
>CFIDS/FM/MCS since 1995
>Disabled Mom to Olivia & Blaire 11/3/97
>List Owner: DisabledParenting@egroups.com
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