Dear Annalise,
Thanks for understanding what I write as you are the very small minority that does.
I write every so often and not so much of a presence here anymore as I'm trying on my own to get awareness for CAH.
I asked someone that has done a great deal for CAH to come and speak about the condition to the major medical centers and medical school in the area.
She replied as well and I'm honored and in awe that someone like that would reply to well nothing me. So the next step is to write a proposal to the major medical centers and then let them take it from there. And, if that one doesn't work? there are even bigger fishes down south to write to.
I like writing on here but I've branched out : ) and if we don't spread awarness about what the condition really is by going hey medical schools/centers this is whatCAH is and please make it more than a paragraph in the education of your students becuase LOCAH for example is 1 in 100 this isn't really that rare of a condition.
I've had more understanding when I've explained CAH to people in a Bar or at work than medical people. So the thing isn't to get mad because they have a bazillion things to learn but rather to put the info out there to make CAH more common place and understood.
It's hard when you are in the hospital and have other medical issues but the issues with CAH make it harder to treat or be comfortable enough to get better. It's defeating when well meaning medical people make sincere comments but one with CAH feels judged for example I had this one well meaning nurse who was trying to pick a nice thing to say go on that she just loved my voice and me being sensitive of my deep voice that also may sound like gravale becuase of the thyroid condition wasn't all that happy about her comment and thus I alienated her and she thought I sucked ( I wasn't nice to the medical staff .....she found my crying offensive? and like they are perfect? life is to short to figure out other people) I had another nurse go "what... something stuck in your throat" because the sound of my voice is deep and it was me that had to bring up that umm you realize that I have two hormone conditions ....ummm remember my chart and all I got was a snarky "oh." I offended another nurse because I as she wrote " in a deep calm firm voice told her that no I didn't want her to hold my hand." I offended her but with that one i tried later to take the time to explain somethings about CAH. I'm not a hand holding type of person either maybe from adults in the medical field touching and peeking but that didn't mean that I didn't like her anyless but back off until I warm up to you if i ever do. At the U of Mich for there genital exams it was take those panties of for the group and Endo- hurry up because they a roaming pack with 20 other conditions to learn about - we want to take a peek ....hand holding didn't get it then and not now - if the nurse would of learned a little about cronic conditions like CAH then maybe she would of got where I was coming from ...If I reach out for your hand then yep you be there but otherwise you are distracting me.
Some people take it so personal that really they shouldn't flatter themselves because it has nothing to do with them and everything about being born with a condition that wasn't well know back then and being fiddled with. Oh ..did I go on a winding trail there and my point is my deep voice that sounds like I smoke and I don't makes my self -estemm take a nose dive every time someone with -out CAH comments on it. Can't be fat, gotta have genitals that people can recognize, gotta have the right sounded voice gotta gotta and only a few will give you comfort when you burst into tears. On good days which are most ... I like to think that I sound like Loren Bacall or I have that fake mall voice that I try in hopes of making it sound not that deep becuase with it being deep is when the norm becomes unsettled. It has to be sweet, cute, and perky to go or else people think I'm angry and not nice when reality is that it takes a lot to get me angry, I have an inferority complex because of the genital surgery and a natural deep voice....women are your voice is firm ......and it's oH crap I forgot my female perky attitude.
I think this message board is great and a wonderful portal to CAH.
Annalise- I think that you can do anything that you put your mind to.
peace and see you flying along the Milky way > : )
