Hello all...
I've noticed that there were a few new-comers, but I've been lazy and haven't looked on this forum for a while. Sorry!
To answer a few questions that were posted in the last month
When I was diagnosed and what Its like from a teen perspective? Well I was diagnosed at 6 weeks old. I was one of the 'lucky' ones who wasn't virilized enough to cause concern at birth, so it was all a complete shock to my parents and made diagnosis hard. Doctors first diagnosed me with 'failure to thrive' and they blamed it on my mum, but I got worse and they finally came up with SWCAH. I have had surgery - but don't get me started on that subject, nor the gender issues because I will be here forever. Yet if you do want to ask about it, feel free to email me (I will post it at the bottom).... I used to get sick quite frequently when I was younger (from around 4-8 yrs) but as I grew older I have very rarely needed to stress dose. Infact I had my first adrenal crisis in nine years, over the Christmas break. But that one was probably my worse and most life threatening ever. Umm what else...since I was about 14 I have been really well controlled. Prior to that my levels were horrendous - probably because of being overweight and having a lazy doctor. But since loosing alot of weight it's all been good.
CAH isn't as bad as it all seems at first. From a teen perspective there are alot of insecurties about identity and the struggle between who you think you are, and who others want you to be. For me that has probably been the hardest thing. I am a very self aware young lady, who thinks way too much about what other people think, so somehow I feel as though CAH is a secret that I should be hiding. But in retrospect I know how untrue and overcausious I am being. Generally people won't care, but its just a fear that I have at the moment - of being rejected because of something I have absolutely no control over. I suppose this is one of the stages that all adolescents go through - yet it is escalated by the information and experiences I had because of CAH.
What else...the final year of school is a shocker for anybody, but the whole lack of stress hormones make getting through the day a little more difficult. So it is important to make sure you look after youself. That is a little contradictory of me - I am probably the worst example of a person who looks after themselves. If anything I make it all worse. But you learn from other peoples mistakes.
I can't say a whole lot about how CAH limits you in everyday life. It hasn't really for me physically, perhaps emotionally it has a little more. I have always been allowed what I want to do, like sleepovers, camps, sport, anything dangerous. So living like a 'kid' has never been a problem...its the not-being-able-to-think-like-a-kid that gets to me. In that respect I think I have lost my childhood. It's almost as though that having all this information about looking after yourself and knowing exactly why you are being treated, makes you grow up so much faster. Maybe it's a blessing in disguise...I've always been mature, so I have been respected by alot of people. But then again it intimidates others and fights start at school...little people and their juvanile ways it's a crack up.
If I can say something good about CAH...it makes you a better person. You go through some really horrible things, but you can learn from them. You learn how not to treat people. You have a better understanding of how you would like to be treated, so you choose to treat people in the same way. I am proud of that fact. I am proud that people can trust me and talk to me, because they know that I genuinely care.
I think that may be all for now. I have to get to bed...but please feel free to post any questions or email me....or if u have MSN you can add me. Whether or not we will be able to figure out the time difference thing is another question (I am in Australia). But I am open to discussing anything so don't be afraid :)
anna_bryant89@hotmail.com
See ya later aligator - Annalise
