Back with a plan. . .
I have been not posting for a few months now, per my lawyers advice, while we were waiting for a final rejection from the insurance company. Well, we were trying to wait for them to cover it, but we ended up getting a final rejection. Now that that’s over, I can freely write about whatever I want without it being used against me. 🙂
I am no longer working. I am on full disability. Please do not be one of those people who assume I have a lot of time to do stuff now, because I am not working because I am truly disabled. I can still walk, just not always straight, or without holding on for balance. I can still use my hands, just not well. And it truly varies from day to day. The fact is, I’m just too tired and in too much pain to do much. And my arms are so week I cannot even fold laundry without incredible pain.
I am still the same strong person who believes everything will be ok, I just cry a lot more, sleep a lot more, and I watch too much TV. But we have a plan. I am going to Florence, Italy, to get the HSCT done. Dr. Ricardo trained under Dr. Georges in Seattle, so I know I will be in good hands. My check in date is Feb. 27th and I will be there a little over 2 months depending on how everything goes. We have an apartment to stay in close to the hospital, thanks to my husband’s wonderful cousin and her Italian husband. He has gotten us into a place for locals. Meaning it’s half the cost of anything we could find on line!
Now we are working on figuring out who will be with me when. I have a friend who lives in England who wants to come take a stent with me, then the rest of the time will be divided into 3 different groups. My father will probably come first, then my husband, then my mom with my aunt in tow possibly. My father thought of the idea of lining out the most likely scenario for how I will be feeling for every day over the next 2 months so we can have the changeovers at appropriate times, and we have the right people in place for the times that will best fit their skill sets.
My father, the best nurse and logistics man, will come first and stay for the worst of it. When I start getting a little better my husband will come and spend the only week he can, as he has to stay home and work. Then my Mom will come and do what she always does: make me feel as happy as possible during recovery. She has a knack for knowing how to make people feel OK, even when they’re going through hell.
I will be trying to blog, but you should all know that I am going to be saving the best material for the book I plan to write throughout this experience, so that when it is officially named the cure for MS, you can read my book and know what to expect. 🙂