Thursday, May 28, 2009


This afternoon I got a call from Dr. Balabanov's office saying that my insurance will cover one day at Rush. Yippee!?? When Andy and I met with the staff there, a couple of weeks ago, we were told that this is typical of most insurance companies. They will just keep submitting claims on a daily basis and go from there. I'm confident that my insurance will cover this. (I'm keeping my fingers crossed anyway...)

So, now I need to book some flights, get a laptop and learn about Skype. I just might even make an appointment to have my hair cut. I am going to donate it so I've been letting it grow and it's gotten much longer than I would normally allow it to. I wish I could make a wig out of it!

Monday, May 18, 2009

Something to Look Forward To

This morning I dropped off my 5 year old at pre-school and went to the market. I have a handi-capped parking permit (I call it my crip tick) but I rarely use it. As long as I park near the carriages I am OK. This morning it is raining and there was just one carriage and it was wet. I decided to be brave and take the chance of walking into the store without support. I made it in OK but when I went to reach for a dry carriage I had to step on the slick floor. I slipped but I managed not to fall. Unfortunately, anytime I come close to falling or even get nervous about it I "lock up" so to speak. It took several minutes but I finally started to relax enough to do the shopping.

At the moment I slipped the first thing that went through my mind was "I forgot my cell phone!" I don't dare leave the house without it. Not even to walk my 8 year old the 100 yards down the road to the bus stop. I had to charge it this morning and I forgot it. I am afraid to be in public without my husband to hold onto me. Or to go to a store without being able to hold the carriage to keep me from falling if I trip. Taking my kids to the park where I have to walk on grass in treacherous. The last time I fell at the bus stop my poor 8 y/o son was horrified. There wasn't anyone around to see us but he was totally embarrassed. "C'mon Mom, get up!"

As I left the market this morning I thought about how wonderful it's going to be to not have to feel that fear any longer. My attitude has changed since I got back from Chicago and was told I can have this treatment. Now, instead of being so nervous about falling all the time I think more along the lines of "it's OK, it wont last forever!"

Saturday, May 16, 2009

Something I Feel I Need to Say (disclaimer?)

When my beautiful, dear friend, Jenny, (her blog link is in the sidebar) told me about Hi-Cy and asked if it might help me I kind of dismissed it. She kept asking me if I had researched it yet and I finally decided to look into it. I am lucky that I had her to tell me about it and that I had her blog to read. That alone really made me hopeful. However, nothing convinced me more than reading about it on the Johns Hopkins website. I was convinced. Over the course of a few weeks I read it over and over. We all interpret things differently and I wanted to be sure I understood it. I asked my husband, Andy, to read it to see what he thought. He was very interested.

My point is that nothing will replace your own research and interpretation. I will not knowingly state anything that is false. But, I may interpret things differently than you and what is fact today might be fiction tomorrow. Do your homework. We all need to be our own advocates and take charge of our health care. Ask your doctors questions. Challenge them. Get a second opinion. Most of all do your research! Don't settle if you aren't happy with the results. Change doctors if you need to. I am on my third neurologist. He is open minded and aggressive with treatment and that is what I was looking for.

I had originally called Johns Hopkins about having the Hi-Cy at their facility but for reasons I don't really understand they didn't want to treat me. I didn't want to take no for an answer so (again at Jenny's suggestion) I contacted Rush. And now here I am on Blogger!

Friday, May 15, 2009

My First Post!

Hi! My name is Jane and I am a 43 year old woman with Multiple Sclerosis. I was diagnosed in 1998. In July I am going to participate in a clinical trial at Rush University Medical Center in Chicago. I got the OK to participate just two days ago. I am very excited!

I will receive high dose cyclophosphamide (chemo) for four days. This will "wipe out" my faulty immune system and then my body will regrow a new one. The idea is that my new immune system will be healthy. I believe that this is the "thing" that I have been waiting for to come along since everything else I have tried has not been very helpful. What has been helpful is reading about other people who have had this treatment. I hope this blog helps others.

I probably wont have a heck of a lot to say until I get there. But, I am constantly told, I talk too much so maybe I will. I have the utmost faith that this is going to work and I want to see this treatment become available for all MSers. The doctors wont use the word cure but I think, for all intents and purposes, this could be pretty darn close to one. Maybe I'm being overly optimistic. I refuse to believe that I am. That's up to you to decide.