EDIT: Incredible. I found this post in my drafts folder and it was from 10/9/11. Over a year ago. A year ago! I was still recovering greatly from the craniotomy and trying to find my way with Cowden’s Syndrome. And, I chuckled when I read about the message board (support group!) with Cowden’s. We all know how those turn out. I’m really done with Cowden’s Syndrome support groups. 🙂
And the last sentence I was starting to type something about my tongue. That’s one of the other symptoms of CS, little bump type things on your tongue. Thankfully, mine is not very advanced because my dermatologist has shown me a book he has with a picture of a tongue severely involved.
Another thing to be grateful for.
And, when I told that to Mom this morning I kind of caught myself mid-sentence. I *AM* normal. Whether or not I have Cowden’s doesn’t have anything to do with me being “normal”! That kind of thinking is going to get me in trouble and is going to make me struggle even more with staying in faith and way from fear.
I found this incredible message board that is quite active, although small, with those who are dealing with Cowden’s. Rather, not dealing but living with Cowden’s. This board and the people I’ve written with has been such a blessing to have found! One person there has done an amazing amount of research (Gah! Have I already written about this? Oh well, maybe if I have it’s just important enough for me to write about it again. Must be weighing on my mind heavily enough…) and I know that I cannot ride on his coattails. I must do the research for me. But this is so confusing and so overwhelming and I just don’t want to be running on fear but I want to have the best health for my life! There is some type of medication called Sirolimus, but it’s in the Clinical Trial state for Cowden’s if I understand correctly. AND, it’s used for those who have kidney transplants to help them not reject the kidney. But somehow it’s been found out that it helps those with Cowden’s keep their tumors small. Speaking of that I’ve noticed some weird things on my tongue lately and that is one place where