The first time that I suspected that my daughter, Jess had Cushing’s I went outside and sat on the back step and cried. Then I called my older brother and cried some more. Then I put it to the back of my mind for a week or two until I felt better able to deal with it.
I had decided that I needed to keep a photographic record of Justin’s Cushing’s (I presumed) symptoms. One night he let me take photos of his stretch marks, which are a symptom of Cushing’s. They seemed to come and go, get darker and lighter, so I thought I’d record them. I also wanted to take photos of his buffalo hump, which is another symptom of Cushing’s. His wasn’t a *normal* buffalo hump. His was terribly slumped shoulders. I did see photos like that on a Cushing’s web site. It seemed I was always walking up to him and sticking my finger in his back to get him to stand up straight before I knew that he couldn’t really control the slump of his shoulders.
So, anyway, I was taking pictures of Justin’s hump and decided I should take pictures across the back of the neck of a “normal” person. I called Jess into the bathroom and asked her if she’d take off her tee shirt and I’d take photos of the back of her neck. After taking a couple of photos I looked at the screen on the back of the camera and it seemed like my heart stopped. There on the back of Jess’ neck was the most perfect little buffalo hump.
It’s surprising how fast one’s mind can make connections. I instantly remembered how she had started getting a lot of excess hair, she had gained quite a bit of weight, once, just once, she’d told me about not being able to fall asleep until the wee hours of the morning. A reversed sleep pattern is fairly common in Cushing’s patients. Within about ten seconds of seeing the image of her hump on the camera screen my intuition told me that she was also dealing with Cushing’s.
I already felt like I wasn’t dealing with Justin’s illness very well. Now there were two? Shit. How would I ever manage that? So, like I said before I went and sat outside and cried then I ignored it for a while. A week or so later I picked Jess up after school and took her to Sonic. As we sat there with our treats I got up enough nerve to tell her that I thought she also had Cushing’s. She took it better than I expected. I think she was a bit relieved because it would explain the things going on with her body.
I already knew that Justin had Cushing’ I just didn’t have confirmation. I had made the decision to take him to see Dr. Friedman in Los Angeles but hadn’t set up the appointment yet. When I was able to set up the appointment I made it a double. No, it wasn’t two for the price of one! That appointment was the beginning of many double appointments with the kids.