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I do try and work on my anger and maybe someday I'll get through it :) or it will always be there to some extent. I think alot of it is that was we never able to grieve about actually having this condition and the nature of the area that it affects and what it does makes others not want to mention it and then on the other hand it is wonderful how far CAH has actually come. It's not the condition itself or even the surgery in my case to an extent but slice all those nerves just because it was going to grow... what a reason butthe part that destroyed me and has a negative shadow on my life was all the genital exams ...Every Tom, Dick, Harry, and Jane HAD their hands in and on my genital area and it doesn't matter to someone between 5 -16 that these people were trained because really they were learning and although it is good that so much was learned about CAH and many docotrs were able to go on and help other patients with this knowledge but on the other hand from my perspective I came away with the feeling of being sexually molested...medically raped by the surgeon, ped endo and the revolving groups of residents. Sometimes it was groups of residents other times it was two, three, or one. I can describe every time i had to service them all and then don't get me started on that women what they called an Endo fellow stuck me with her at age 17 thinking some sort of bond would happen she wrote that I WAS bubbly cute and outgoing they had no clue that their exams were helping me think that suicide was a great idea and given a choice and with repect to the decesions that were made and I would of done the same thing BUT should of waited to include me in on a surgery like that folks and offered up a little more info during the exams shhhh we don't want to say anything to her but it's ok to sexually molest her ..were the doctors jealous because i was actually bigger then them? It's like I was ducked taped around my mouth and shoved with a scapel farther into female than I was ready for at the time AND THAT made me a nervous wreck plus nobody says much except to repeat what the doctors say BUT thanks for the cortisone, thanks for the blood tests but get your hands out of my pants .......Back to the endo fellow they stuck me with these are the ones that actually go on to be Endos...somewhere in Michigan some kid is over supressed on pred because of this woman and thinking about killing themselves at 18 because of this woman. Be good We're good let us look and feel ...judge ...and It's picture day click click. I'm screwed up but I do try and work on it ..I've been sober for a couple of years and that does mean something ...I know in my heart that THEY didn't see things the way I did and were really doing their best. Proud of the way they helped me..really and I DID GO TO THE best Medical hospital and got the cutting edge care for that time period but it doesn't take away having these feelings. I'm lucky that my doctors never said what went on was irrelavent like your consultant but were really open to what I had to say and wanted to share the how and why from their perspective. I think if more really talked about CAH instead of what doctors and parents want to here then I don't think the anger would be as much ...I don't know ..this is a quirky condition at times ...I'll talk with people that have CAH that will do presentations for parents but what they really feel is held in ...Is this anyway to "run" a condition : ) I was a pub ...yes Ian a real pub in the USA and these two women in scrubs were going on and on it turns out about their own cancers and of course throwing in opinions about Men and life in general. Their cancers were ten years ago and they were just hashing about over it but if anyone with CAH talks its you have to get over that and be good ...you freak ...that's more like for someone born like me a little past the enlarged clitoris stuff. Enlarged clitoris? leave it alone gender is in the head and something big has nothing to do with gender ....if she doesn't like it then she can have it reduced and if someone is born like me wait awhile because you have no idea what those excessive androgens did and around five the kid will show you or crap take your chances have the surgery OF course it's your kid but please all this my baby after going through surgery will now give me grandchildren ...geez man that is presure for a kid and add on spreading their legs for the good doctors to look. They think the girls are going to use dialators as teenagers lol ...so much easier to trade the dialator in for a boy to have sex with because of the surgeries, exams plus parents wanting you to have kids and not be a lesbian, ..what a fun condition If I'm offensive hey but a parent also told me ewww gross chicks with dicks and another parent mentioned freak stamp and another one mentioned national enquirer. So we never get to work through the condition itself that actually has nothing to do with the external genitals and everything to do with the anrenal gland shhh we don't talk and everything is swell and if you do say something that isn't completely sweet it's you need theraphy ...been to theraphy and they love me and agree with everything I say : ) a shrink told me you've had alot of "medical crap to deal with" lol ....It did suck the way they learned about CAH and that is the nature of having a condition that is being learned about I think it's getting better and better myself even though medicine still doesn't know that much about it. Medical Conditions hurt at times and you find ways to cope. I think by the very nature of the decade we lived grew up in that it made it harder. I've talked with people that have other cronic conditions and they have the same type of concerns that we do but it's allowed to be expressed. People with Diabetes have their own magazines ...I've talked with People that have Cerebal Palsy and once they knew that I had a condition they let me in on a few things. Any medical condition or even people with out medical conditons have something.
Now if someone actually finds that they need something to help the serotonin (SP? ) keep firing or for anything else then it is cool and not what I'm trying to express here.
CAH ohhh you have this anger ..you need theraphy..pills ..Hello you do realize this is a hormone conditon and what I really need is someone to challenge me when I get like that but also show empathy and support afterwards ...it's as simple as that. I would love to know more about what men with CAH feel and go through. I think that way to much is spent on what is the girl with CAH going to pick up ??? hummm a doll, truck, or gun who cares? this has been done pass on the legos because I want a teddy bear.
You are going to be a great nurse! If you want fun do a search for thyroid conditions on the net!
