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!


  1. Jane, you are so brave and so very right! It can be difficult to be your own advocate but ultimately the decision is yours.
    Christin P

  2. It's especially difficult when we don't have the support or the information we need to make the right decisions.

  3. i wonder why they wouldn't take you at johns hopkins? but i'm SO GLAD you kept at it and are going to rush. when do you leave?