Dear Alison,

I agree with you ...you don’t have to tell me.I wasn’t talking about any person that is involved in the cares group at all. Just about someone that really I do think of as a sister and thought how different the show she gave to the parents verse what was said to me. I also talk with others that have a split in how they talk about CAH and everything included with it depending on who they are with.  They gave the canned speach about CAH/Surgeries and so did I for such a long time

THE cares group is wonderful, you have a good thing going on. It’s super and I admire all that.

I don’t assume what people know or don’t know about the surgeries or CAH. It’s not the surgeries that I was writing about but the different body types. I’m glad for the advance in techniques and I also think Dr. New is a hero for trying to research how to change people with CAH into carriers   

I actually had very good control growing up/ wasn’t fat as a child/reached my height thanks to Dr. Bacon and I didn’t realize that it was a difficult thing until I found this board. Had puberty on time and if you had to keep anything like I had (now PRADER 5) were I was sent home externally  looking male then with a further visit was found to have no testes and only female chromosomes and female sex organs until you were 12  I can’t imagine how difficult that must of been for a female.

Five was the age for me and the surgery that had was the good outcome for the era. Can someone vent over the surgery or CAH without others going Oh must not of been goooood ? lol  geeez With the cancer we all vented,cried felt good, felt bad, felt grateful, felt mad, felt scared, felt grateful again, felt hopeless, felt hopeful, felt why me?, felt why not me?, felt grateful, felt mad at doctors/ techs/ nurses. felt helpless without doctors/techs/nurses. Hoped and prayed the technology was going to help with all of this all rolled into one.

What I write really doesn’t help anybody and nothing that I’ve said would change the U of Mich and isn’t suppose to. The information that was gathered in the 50’s, 60’s, 70’s about CAH was the building blocks for the results of today and that is awesome. Yep, I’ve talked with the ped endo. Nice old man and he did his best. A lot of medical students learned about the condition CAH because and others were there and do I still flinch if any medical person trys to touch me? yep except for that one er surgeon and come to think of it er doctors in general lol ...the doctors back then did do their best. I’ve talked with the surgeon also didn’t ya read my other posts lol? ....he is a very kind, open, really patient, and of course intelligent man the biggest concern was to lessen tramatic experiences. I’ll always be their patient- I’ve grumbled, vented, yelled and they listened because smart men know not to interupt a midwestern woman because they will not win : ) By talking with them I gain comfort ..strange as it may seem to anyone. Nobody goes to med school to be a thoughtless vilian : P    Yes, it is craptacular for groups of students to peck and poke at you but they had to learn and if they didn’t? CAH wouldn’t be as far along. What doesn’t kill you will make you stronger or make a shrink rich ...I’m so stupid lol. In that era, I was at the best place possible and it would of been worse to of been suffled off to some ped endo that never saw CAH. People  vent about conditions or not. I came here for coping and support for my CAH and to be educated about the newest and latest. The number one reason why I like this board is that the people here have a religious bent and I need that - 

 

Jess,

If you still lookin at this? I answered your post about synthroid under the post you asked about it. When I think of the name Baskins? I think of Baskin Robbins Ice Cream : )