Tori's Story

Last Monday I was in the hospital about to go into surgery when the anesthesiologist walked in picked up my chart and said "Wow, Adrenal Hyperplasia. I read about it in school but your my first patient I've come across with it." then I say "I guess you must be new in the industry," "No" he replied, "I've been doing this almost 5 years."

Have any of you ever felt the sense of helplessness that comes from someone your supposed have total faith in, and their knowledge of a life threatening disease is from what they learned in a sub chapter in medical school? When I heard his reply my heart sank again as it has before, and I hoped in my mind that he would give me the right dose of steroids to get me through the operation

I entered puberty when I was 5 years old, it was 1975 and I remember spending weeks in the hospital while they ran test after test trying to figure out what was going on. Once they had an idea what it was I remember countless doctors coming in to look at me, to poke and prod, to discuss and analyze as if I wasn't in the room, that is the first time I remember feeling helpless.

I was diagnosed with CAH 21 (salt wasting), my parents were given medication to give to me each day, you can imagine how difficult it was to have this done to a 5 year old who felt fine, so I managed to elude this process 60% of the time.

By the time I was 7 years old, I had the body of a 14 year old. Being bigger and stronger than my peers most would think a good thing. Not I,all I wanted was to be like everyone else, I didn't want to stand out. I remember having to go to the bathroom and holding it until no one else was in there because I was teased for having pubic hair when no one else did. Writing it know it sounds silly, in high school every guy in the locker room compared themselves against others to measure their masculinity, but that is high school, I was only 7 years old.It didn't take to much time for me to figure out that I was much stronger than everyone else. So I thought to myself "Everyone will love me if I always win in every sport and they will defiantly love me if I show off my strength by picking fights and beating up people." Don't ask me how that made sense, it just did.

So my life at school began to spiral downwards with trips to the principals office and life at home was different. My parents loved me

very much, they were never explained much about the disease and so they did the best they could. The problem was that I looked like I was a young man and so that is how I was treated. It used to drive me crazy that they wouldn't let me ride on the merry-go-round horses at K-Mart because I was to big. I used to hate that word "to big", if I was to big then how come I wanted to do those things?

Problems really started in 5th grade, people started to pass me up in height and I felt threatened, that maybe someone else would stronger than me. I also was very tensed up because of sexual urges I was experiencing and having no idea what was going on.

By the time I was 16 I had already developed my "small man complex", I was one of the shortest guys and was constantly trying to prove myself to those who knew me when I was the biggest. I had quit taking my medicine and due to the stress of just being a teenager, I had my first real adrenal crises at school. It was so bad I lost conscienceless for 3 hours and ended up in intensive care.

It was 1986 and doctors knew more about CAH then before and I was reeducated on what I had and what could happen if I didn't take care of myself. It took me years to adjust to dealing with what I had, to know that death could be waiting from to much stress or a emotional or physical trauma. But I did adjust.

I am now 30 years old, I married my high school sweetheart and have 4 beautiful children. My children are used to "daddy getting sick" and the ambulance coming to our house. I had a hard time finding and keeping jobs because of adrenal crises' happening at work, and it took me awhile to find a job with just enough stress, that I can handle and be healthy,but I did.

I feel stronger for all that I have gone through, I have beaten odds that have stood in my way and am proud of who I am. There are people who are much worse off than I and have made good lives. If anyone wants to get in touch and talk, I'd be more than happy to.

twobyfour88@hotmail.com