Over the last few years I have done alot of research on my own. I found that I wasn't getting the information given to me from the doctors and I was terrible for remembering to ask the doctors things while I was at appointments. I have become very good at researching for myself. I do have to admit that when I was first diagnosed there was little or no information regarding my Cushing's Disease that didn't pertain to dogs and horses.... and last time I checked I wasn't either of those! Over the last 3 years I have been able to find more and more information but most of the information I have found hasn't been useful for me. I have already had 2 surgeries and radiation and all the information I could obtain on the internet only had surgery and radiation as treatments. I have already had that done and now I am left wondering what next? It is scary to think that there might not be any more treatment options for me....
Luckily one day while I was watching the TLC network I came across a show called "Mystery Diagnosis", not sure if you have seen it but the show features a person who experiences symptoms but doctors can't figure out what is wrong with them. The show explains the symptoms and all the testing and medical issues that these people have to go through before they are diagnosed. The lady that was featured on this particular episode had the same symptoms as I had, her name is Sharmyn McGraw.
I remember sitting at Justin's parents house watching TV with the family. I started feeling kind of embarrassed because Sharmyn was explaining her symptoms in detail and I hadn't quite told Justin and his family all my symptoms because some of them were a little bit personal. But I guess it was good that they knew and I wasn't the one who had to explain them! But as I sat there watching this program I kept saying to Justin "I bet she has Cushing's Disease" (they don't tell you the disease until the end of the show", and Justin just laughed and said "I doubt it." But the longer we watched the show the more convinced I became that she also had Cushing's Disease. It turns out that I was right (not that that surprises me... just kidding! ). At the end of the show they talked about how Sharmyn had started support groups and things like that for people suffering from this disease because she went throught hell before she was diagnosed and she wanted to help others.
I ended up Googling her name and obtained an email address to contact her. I am not going to lie, I kind of felt like a stalker! But I emailed her not really expecting to get a reply from her. I told her about how I was young (19 when I was diagnosed), I told her about all the weight I had gained, all the treatments I had already received, and how I felt both emotionally and physically. A couple days later I was amazed when I checked my email and I had received an email from her. She was very supportive and I knew she understood how I felt because she had went through a similar situation. It was the first time I felt as if someone truly understood how I felt. She provided me with some useful links with helpful information. She also provided me with the name of an Endocrine Specialist in Toronto.
I began emailing him and he told me what he would be doing with me and my special situation. He told me that he would have already removed my adrenal glands because he felt that that would be the best solution for my situation. By removing my adrenal glands my body would no longer be able to produce cortisol and that would help "fix" my Cushing's Disease. He cautioned me that if my doctors were to remove my adrenal glands I would have to be put on a replacement medication because your body needs cortisol to survive. This was an option that Dr Chik had mentioned before but was reluctant to do.
Hearing another specialists point of view made me feel optimistic about being cured. At least there was another option available to me! So my next check up with Dr Chik I mentioned that I had talked to another specialist and he said that he felt that they should remove my adrenal glands.... Dr Chik just laughed and said "Oh that is because he is not patient!".... I was frustrated because I am not patient either and I was mad because this other doctor felt that this would be a good option for me and I didn't understand why my doctor wouldn't want to do it.
I left that appointment frustrated and sad... they decided to keep going with the same dose of ketaconozole.... there was still little to no change.... WHEN IS IT GONNA END!?!?!?!?!?!?
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