Thanksgiving

The past few days have been very busy so I apologize for my lack of writing. A few days ago a fellow “Cushie” died and it has hit me pretty hard even though we have only ever communicated via email. She was 24 when she died and has had all the same surgeries as me. She left behind her husband and three children - some of which were foster children. So I want to give thanks for her and her support while she was here and the help she gave the poor children that wouldn't have a mom without her. I have memorial fund and children fund information for her if anyone is interested in helping out her family since she had lost her insurance and had four surgeries in the past year. Please let me know. She is also having an autopsy to see what about Cushing’s can be learned to help others – I think she was very strong and still hasn’t stopped giving! It worries me that I will end up like her but…

I'm also thankful that I have been accepted as a patient at Columbia Presbyterian Hospital in NYC which is one of the world's best in treating Cushing's and other pituitary disease. I have had four calls just today getting the help I need. My first official in-person appointment is December 22 and we are in agreement that it's likely I will need a follow up surgery and possibly radiation. For now the new doc is monitoring my reactions to coming off steroids since I can't have surgery while I am on them. This should make for an interesting holiday season since every time I try I end up in the hospital or close to it. I am to call her anytime I feel sick or any questions arise. Let’s hope she is a doc who means it! But I am so thankful they chose me since they only take on a handful of very sick patients. Finally I may be seeing a doc whose life work is studying people like me. Hey, maybe you'll see me written up in some medical journal. I'm very excited and a tad scared but mostly thankful that I know now that I have the best chance for surviving and beating this disease - a chance many don't get!

The weather is cold and we are supposed to get our first snow tonight and I can’t wait to make a snow angel of the season. I’m also cooking a feast with a very important person tomorrow and someone who has supported me through all of the tough times as well as times that are good but are not “typical” Dulcie. I can’t wait until I can give my “real” self to people I have met through this disease. And, I can not wait to return to school to help others whom I have not met yet! I am aiming for Summer 2006 and also hoping to run my first triathlon or marathon by then. I have another friend who is going to do it with me. It should be fun!

I do have some not so happy news; I am losing the feelings in my arms and legs due to the tumor, the disease or something very strange. I am wearing splits at night and have to have nerve stimulation testing done after the holidays. That and they had to up my drugs to a very strong narcotic that I am afraid to take and honestly it does not do much for me. But the good news is when they fix me in early 2006 I can regain or relearn all that I have lost and then some. There are times that I worry about all that but I know in my heart that I will not settle for anything less than being the best I can!

Well, it is late and I’ll probably write again later since I have a whole list of things to be happy for…including you, my readers!