Dear Mother of 2 wonderful SWCAH children,

I’m flattered that you took the time to write to me personally and curious about people that read my posts but don’t take the time to respond to what their concern is right then and there. If you are inclined to be upset by a phrase that someone uses then perhaps gentle lady, it might help to ask them to clarify at that specific moument. It would be pretty safe to assume palms up when someone is writing about there own medical condition(s).  You didn’t have to explain to me why your daughter had surgery and you are assuming things about how feel when really I’m just someone - a speck on the internet who is coping with having a medical condition.

I enjoy this board and enjoy learning new info plus responding with parents and adults that have this condition. I do feel that no matter what I write that people are going to be upset. I don’t have a clue as to why you only pick up on things that I write and feel that I’m angry, I’m an intense passionate person that is sometimes agressive in getting a point across or sometimes to assertive ..nobody is perfect. For the longest time : ) I kept my mouth shut and did the happy, happy ...was rather stepford like (from the movie Stepford Wives cira late 60’s).  

 

I didn’t have half the medical problems that I read about here and that is a credit to the U of Mich/ C.S.Mott’s Children’s Hospital and the ped ENDO who job was to teach future endos/ ped docs by using the likes of me and if I wrote always how good things were then other people would be frustrated becuase things aren’t always good for everyone ....yes it was traumatizing and a sheet would of helped at the time but sad that you need to silence another persons voice that is coping with a condition.  Yes, the surgery for me was also done to allow for menstraul flow and I have written it was a good job for the time period but I do grumble about fixing of this at times becuase I liked what i was born with and wasn’t hurting anyone  but at the same time know that yes it just was only fixing what the wacky and I used the word wacky instead of F##### -up because you actually used the word "yucky stuff " ...see the surgery was to fix the wacky adrenal gland and so I could slepp with really good looking men later on and I have but it is better to be married ... I never slept with anyone’s husband but I could of. See we are all types of peopel on this board trying to get education and support for CAH and my figure of speech is different at times know that I stopped trying to be the happy stepford chick that never brings up what was done and I ended up having a melt down in my late 20’s because of that.  I have a feeling if we did meet that we wouldn’t relate although their are three from this board that I do.

To let you know - I am a happy person and don’t write in anger. I would be dead if it wasn’t for the skills of those doctors in Michigan but that doesn’t make any condition easier and I use what would be sometimes called gallows humor to cope. I write things like sliced and diced instead of Clitorectomy, Vaginoplasty, Urethroplasty because well  it’s just me and I also stated that I was going to get microwaved and fire in the hole to my one boss before I was on the way to radiation and he laughed. But,  a tech made a joke and I was mortified but later respected her for at least being her and that was the way she was trying to confort that cancer wasn’t any big deal...see that was her way to bluff and get through. See, I’m not angry, angry sure sometimes get mad about things but it blows over. i accept my condition of CAH and the gyno cancer but the thyroid thing that one just sucks all the way around but I liek the celiac sprue one becuase I learned a new way to think about food.  You are asking me not to be what you assume to be angry when it my intense passionate self.  I’ve talked with parents of Children with CAH over the phone and also people with CAH -they find me funny but quiet ...nope I spent to many years like that and it is interesting that when adults try and speak/ write and it isn’t quite waht you imagined or want? then you try to slience them by telling them how you want them to feel or what they should do and that is sad.  

My endo is flippin brillant ....yeah, yeah not perfect and sometimes just doesn’t listen  ; ) but I don’t write post to others when they go on how bad endos are or how terrible ER’S are... I’ve wrtten a couple times how wonderful the ER’S in my county are but you missed those posts. I could right posts after posts how good my endo is that he tries, is interested, is willingto think out of the box and has some kahungas to tell me if something I say isn’t a ENDOCRINE ISSUE but another time I hung up on him because he called right when I was at a pub talking with these two drunk women that had cancer and flirting with this guy in a tie. I love my endo and I can rant and rave about having CAH becuase that is how I cope. Sweet Lady, CAH doesn’t go away and is always woven into whatever is your future. I getthe impression that you wish me not to be on a message board that has given me great support? and think that I’ve given support and ideas to others. Plus, made friends from being on here. May I ask if you are sad/upset by what anyone writes on a message board that you might benefit from looking into waht is happening in your own life? It’s just an idea as I’ve been reading with interest from http://caresfoundation.org and the one carrier post here that side effects of being a carrier of CAH may include depression. I remember once on here that another lady mentioned that any happy jokes that I wrote bothered her and yet someone else was ticked that I aslo made a reference to God/faith...ya know if what one person writes or says bothers you then maybe a look unward is needed. This one parent wrote me an Email that how I was born was "Ewwww gross.....chicks ..." and her ignorance bothered me and still does. But, that is the way she is and her duaghter was born the same way and the problem was the way I reacted to it and still do. I would like to see more info and education of what in the end is that CAH is an adrenal gland condition. I like CARES FOUNDATION but I also take with them as myself and they still like me. SEE, your daughter will be like herself and not me so why picking apart my writing?   

Each generation does benefit the next and I can  thank Jan B. and Mr. Wanye Goodwin that post here and there.

Conditions aren’t easy and sometimes just such suck  and a wise old man told me that "medicine isn’t always right but it is forever changing" 

Yes, I write and talk .....I also write about homeless issues other places

Internet is an interesting medium in that not being able to see that person’s facial expressions or there tone causes the reader to assume things that might not be what the writer intended and I as others do ....doesn’t mean that I like them any less or would think that they should be this way or that way.

I’ve found that people with CAH are fair minded inviduals and whatever each feels about how they manage having  CAH- it is respected. have you ever gone to one of those cares foundation get togethers? Did you know they also want to get a camp together for kids with CAH.

Although, I don’t understand why some people think they have the market on God  : ) I’d like to thank you for your interest in my spirtuality.  It’s sad that you don’t see that I’ve grown spritually from dealing with CAH or the cancer that I’ve wrtten about but just maybe yo uare looking only for certain things in my postings for some reason. I know you don’t know this but I actually asked God, one drunken 3 AM night in the everglades for help back in 1998 when I was 28 for help about the nawing feelings due to everyone else wanting me to keep my voice about having CAH inside. So, I made it how and searched coming across this message board. AND, itsn’t it cool that this board is run by and that maining on this board have a tendency to be a little more on the religous side.

I don’t know if you are goingt o be able to get anything that I was trying to express but I’m at peace with that. Anyway, I’ll stop here.   Aimee