There are about 18 different directions I could take this prompt. However, since this is a Rare Disease Awareness and Advocacy blog, why don’t I write about how my life suddenly changed on July 18, 2011?
If we go back to the beginning, see this post about what led me here. (Boy, I just took a few minutes and re-read those posts from the
early dark days. My anxiety is full-bore right now…I am so thankful that time of my life is over.)
Sometimes I wish I only had the brain tumors, and not Cowden Syndrome also. It seems like my energy could be put to better use if I was focusing on healing and recovering from just one condition, not two. HAHA.
Yet, life doesn’t roll like that for me. I do have this thing called Cowden Syndrome and sometimes it’s a beast to carry. This month I have a lot of medical procedures and I am already nervous about them. I have tried to focus my energy on other things (reading, volunteering, etc.) but I know I will be slapped upside the head come next week. I feel this need at times to “be prepared” but some days I want to put my head in the sand and not come back to reality for like 2 months.
Next week I have the colonoscopy and EGD scheduled; really really really really not looking forward to that again. I tell the doctors every time that I need to be sedated before going in. Not one doctor has listened to me and I have such huge PTSD for anything related to surgery/procedures that I have a full blown anxiety attack right before I go under. And that sucks eggs. Bad. I pray this time is different because I met the doctor at my pre-op who will be the one doing the procedure, and I begged him for something before going in. He got it! Please keep your fingers crossed that it will be smooth sailing. 🙂
I am not even going to discuss the EGD right now. Denial is a wondrous thing at times.
The last week of March I have the breast MRI. I don’t want to write about that either as I want to enjoy a bit longer my trip on the River Denial.
My hope is that if I can reach just one person who might say to themselves, “What’s a Rare Disease? What’s Cowden Syndrome? What’s Lhermitte-duclos Disease?” then all I’ve endured so far will be worth it. I wish someone (friend or medical personnel) would have told me in 2011 that I am not alone, and that I will be OK.