Why are you assuming anyone is saying anything nasty? I come here knowing that people with the condition want to offer help and get support because the support for the condition doesn’t happen other places meaning people without the condition try as they might just don’t get it.

I’ve a cancer survivor for 2 years myself and have no idea what another days brings. The best way to deal with the cancer was to get real.

Was at a cancer group regulated by hospital interest and people with forced smiles with pain underneath but it wasn’t my thing even though it was helpful to many.

Went to a pub for lunch and these women in scrubs were having a great old time - the had just gotten out of school for being ultrasound techs or something and they were happy talking about ex and new husbands plus jobs nothing was stiff and forced but real.

They wanted me to yap with them like the reast of the place and also have a drink - I decline the drink because I was at lunch from work and also because I at the time was a year out being a cancer survivor .....no no with the forced smile I don’t do anything  ..don’t drink nothing had cancer must hold my breath .....honey they went  and swacked each other .....we had cancer ten years ago and live and be yourself which is so true.

 At that time people were telling me ..endo nurse that I had to get over the cancer etc but those ladies sitting in that pub knew like I did that one works thru something and shares those past experiences with others  for better or good.They told me that the nurse should *&^*$*$7  becuae she never went thru it.

 At that time my endo called to discuss the thyroid condition that I have that may later cause another cancer later but is being dealt with well on synthroid and now euthyroid. I love my endo ....sexy guy to but just to darn quiet for me but he does call and did for the thyroid thing because I was pissed that endos sooner never said anything and I called his office telling them whatever he wants to do and when for the thyroid ....fine. He called me back and as I’m going yeah whatever because he is the one I hired to do the medical job so whatever will be .... the ladies in scrubs were going hang up hang up and after the endo did most of the resuring act I hung up. 

 

Clitorectomy ....think about it - I don’t have enough in me to be nasty and maybe what you read is things brought out of your own feelings and I wonder sometimes what parents really think of this condition after one parent emailing me ewwww gross chicks with dicks  yes isn’t that nice. She really din’t care that we don’t have testes or that the extremely virilized girl only has internal female organs and that external is result of the adrenal gland. This was her honest feeling about the condition. When I found out I had cancer this one woman went to techs after she followed me out of the hospital that I must of been devastated but that was her preception because the reality was that the destraught face she say was actually me trying to navigate across a urban street without getting killed and i way really thrilled that I could go to work while going to chemo.

 

 

People with cancer really talk and so do those with thyroid conditions( people with thyroid condition really hate endos and the synthroid & armour controvery is a trip. people with Celiac Sprue also really talk.

I wonder if Cah as a condition really isn’t there yet? People will talk and there will always be misunderstanding but we work thru from what I’ve seen of this board for the last ten years.

 

I have a virus (herpes 1) that 80% of the puplic gets in childhood but because of the long term cortisone use according to yet another hot gastro doc - this virus has the possibility of being a one time thing or coming back again. Herpes 1 that most immune systems fight off put me in the hospital.  

 

Hon, point out specific things that you think are nasty. If someone really posts and responds to a thread then that is called drama? I really don’t get it. Also, and this is a big one ....people write on here from all different educational levels and therefore someone that went thru catholic school or endured business writing is going to come of different from someone else. Plus, everyone has different sence of humor and idea what is helpful to other and at what time. When I was going thru the cancer the techs always were joking and the one thought that I understood her gallows humor ....I really didn’t but she meant well. I love doctors that are forth coming about everything for my care and when I write about my CAH expeince I and very forth coming also.

I think many of you do have a great life but also we come from different parts of the contry and different backgrounds where I think that causes some cocern. Also it’s like you all forget what this condition is  (wink, wink) someone female born with excessive androgens even well control might not come of as you want. Plus people born with the condition aren’t and it seems like some parents are shamed ....soooo when someone really speakes then it’s  ohhhhh. I got top notch treatment and it was agressive but i was at the place that taught others......did their agressiveness put a few kinks in my head? ....yep but they are improving   . People with any type of condition do hash and blow about their conditions ....One endo did tell me that if people don’t from tell to t  . I for one enjoy differences in thought .....opinion and I like learning about the knew advances plus hearing about people older that are having medical issues pop up.     

I write with wanting to bring the condition up and forward plus keeping in mind I have the condition a place to really talk about CAH.

Where some of ya kind fuzzy bunnies take as nasty try thinking passionate about the condition and the desire for things to be better.

I’m expressive and like to talk as much as I write. Parents that I have talked with on the phone know this.

I get to the point about things also and some might find that ....?

I write ...real because it bother me about a buddy that went to a get together with parents and I also listened to what a parent said about her presentation. i wish that she would of believed enough in those parents to talk real like she was doing with me at 3 a.m.    

I think every day is a celabration myself.