This is how I will keep you informed from here on out. I got the idea from a new friend who is a lot like me and going through the same thing. It makes sense. I can write about my updates, and you can get as much or as little information you want as I go through this journey. And I can stop worrying about forgetting to email someone. You can continue to email me directly or call when ever you like. I also have unlimited text messages and tend to get behind on my emails. You can ask me anything, I will talk about it, I don't mind. I am also on Facebook and you can always call. I hope to be able to post what I find out from my trip to Texas here. I should make a documentary (my friend Lauren's idea). If you need a summary of my medical history - here it is: I woke up from my reconstructive knee surgery in 1989 with Diabetes Insipidus (excess loss of water - inability to retain water AKA "drinking problem" :) pituitary damage was noted later and a migraine that lasted 3 months. Turns out I had a skull lesion sitting on my optic nerve. I had it removed and tested. These were classic symptoms of "LCH" or "Histiocytosis". I was told I couldn't have children, but you know how that turned out. Then I seemed to go into spontaneous remission for a long time. Then in 2006, my right arm went numb and was weak. I was gradually noticing changes in my balance, memory, speech and fine motor skills. This was gradual and I was able to adjust and hide it pretty well. Then this fall, 2009, I started getting migraines - daily. My fine motor skills were suddenly getting worse. When I told my oncologist at my annual check up, she immediately ordered an MRI which revealed lesions on my brain stem and left frontal lobe (hence the numb arm).
Here is the official web site of this wonderful 'rare' disease I have. I am 1 in a million they say...and 1% of the 1 in a million get what I now have. LCH-CNS
Here is the official web site of this wonderful 'rare' disease I have. I am 1 in a million they say...and 1% of the 1 in a million get what I now have. LCH-CNS
Click here for the disease information.
Check back after my appointment with the 'Super Doc' Dr. McClain - May 20th!. Click here to read about the Super Doc.
Glad and proud to be that "new friend who is a lot like me and going through the same thing". It sucks, but a lot less suckier when you have a friend going through the same exact thing. Now, I just need to find someone who is 2 months ahead of ME, like you did. K
ReplyDeleteMisty,
ReplyDeleteJust wanted you to know we love you and are praying for you. Your positive attitude, which I believe is a gift from God, will see you through. My Sunday School class and Mom's in Touch prayer group at Goreville First Baptist are praying for you daily. Thank you for taking the time to set up this blog so we can keep updated on what is going on and can be more specific with our prayers. Wish we lived closer so we could hug all of your family and do more for you. Love, Tricia Bailey