Hope Floats – #18

I am again inspired and motivated.

Mark and I went to an MS Seminar tonight. Two patient advocates and my amazing neurologist, Dr. John Foley spoke. The patient advocates told their stories and Dr. Foley talked about MS, treatment and most specifically, Tysabri. It was great to hear what Dr. Foley had to say and to hear him speak. I think what I like about Dr. Foley besides the fact that he really knows MS is that he cares. He honestly cares and it shows. It shows in the way he talks and it shows in the way he listens.

A doctor that does not care, that does not show concern cannot treat patients effectively or ethically. A doctor that is more concerned with meeting his time limit per patient or that has become immune to how scary a disease like MS can be will never be part of my team. I need 100% commitment to my well being from my neurologist and I have that. I also need that commitment from my primary care doctor, my gynecologist, my employers, my colleagues and most importantly, my friends and family. I have that and it is the key ingredient to my hope and belief in reversing MS.

While I went to this seminar specifically to hear Dr. Foley speak, it was one of the patient advocates who reminded me how important my battle is. She was diagnosed five years ago and is in her early thirties. She was diagnosed a month after her husband was diagnosed with Crohn’s Disease. She developed thirteen new lesions while on Avonex. She is currently on Tysabri. She spent months only working one hour a day due to fatigue. With all of this she is hopeful. She finds gratitude in giving herself an injection because she can feel pain. I should say that again. She finds gratitude in giving herself an injection because she can feel pain. I connected with her immediately because she is actively fighting her MS and because she loves her life so much that she is going to make the very most of it. Today she runs and wakeboards and vacations in Hawaii. Tears came to my eyes when she talked about first being diagnosed. She was talking about me. We had different symptoms but the same experience. I have talked to many people with MS and read about many people with MS but she was most like me.

As I listened and thought about what a difference she was making for me, I thought again about how I might help and how I could get the word out about this blog to others with MS. Will my story help and how can I tell it? I ask this question alot. Can I help yet? I’ve only known about my MS for a few months.

As we were leaving the seminar, Linde, my new “MS Geek” friend asked me when I would become a patient advocate and speak at future seminars. My first reaction was, it’s too soon. I’m not qualified. I’m not ready.

Then I realized…it’s exactly what I’ve been hoping for.

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4 responses to “Hope Floats – #18

  1. You are simply amazing,”Jag alska dej”

  2. So, are you going to try Tysabri? You can get more information at three good websites:

    http://www.MSPatientsForChoice.org

    http://doodah95.blogspot.com

    http://www.remedyfind.com/treatments/21/1259/

  3. I am seriously considering Tysabri but haven’t made any decisions yet. Thanks for the info!

  4. You are so right Courtney and you would be the best. I wish there were a way to tell you how proud and honored we are to have you as our daughter…..you inspire us to be better.

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