Friday, August 12, 2011

So much good new I just may burst!

So much has been happening lately and all for the good. Since my weird illness last week (flu-like symptoms followed by a solid week of severe fatigue), I have bounced back and feel good as new.

I got a call Wednesday from the Gilenya Patient Guide Network who I will be working with to reach out to MSers and physicians interested in learning about Gilenya. I guess I and other Patient Guides will be putting a real live face to the numbers behind all these clinical studies. People will get to see me up close and tell if I've grown a third eye or a tail from being in the trials and judge for themselves if it sounds like I am genuinely enthusiastic.

Anyhow, the call was to let me know the training I must first attend has been tentatively scheduled to take place "somewhere in the midwest" and either mid-September or beginning of October. They will fly me there, put me in a motel, feed me and drive me around if I talk about myself.

You could have told me 10 years ago that I would be flying all around the country, all expenses paid, just so I could talk about myself and you'd have been covered in coffee or pop or whatever I was drinking at the time as I sprayed it all over you when I burst out laughing. The thought of it still makes me go into uncontrollable giggles.

But it's a serious subject and really, if I can let people know just how this drug has changed my life -- for the better I might add -- then I will finally be doing something meaningful that benefits others outside of my immediate life circle. That's awesome.

So I alternate between giggles and goosebumps but it's all good.

I thought that was enough awesome news for one week, but not so. Today I check my email and see that my clinical trial nurse, Yasmeen has been trying to reach me unsuccessfully by phone. I have a POS cell phone you can't even text on and certainly doesn't have a touch screen or a data package, but it gets me by. Except if I am more than 10 feet from it when it rings. Five rings is all you get before it goes to voicemail. I gave up running for it a long time ago. And so I get messages.

Sometimes I listen to them, sometimes I slack off for a while. Apparently I've been slacking because Yasmeen said she'd left a voicemail and was worried I had a different number and she didn't know it. So I called her.

She had a stack of paperwork that Novartis had recently dropped in her lap regarding my cyst and it's aspiration, along with my concussion from when I fell on my head at the fair last March.

"Jeri! You're falling apart!" she exclaimed. "I certainly hope you are feeling better!" I reassured her that for the time being I was in one piece and semi-functional.

She said she was calling because someone who coordinates the MS clinic had contacted her and said I had not received the results of the blood work they had done back at the end of June so she offered to call and go over it with me.

"Perfect." was all she said, and that was that. I can cross that off the old worry list.

Then on to the other reason she called. Novartis is going to be doing a Phase IV trial to follow earlier trial patients for long term observation. I will receive the same quality care and testing, plus FREE GILENYA for FIVE YEARS!

She said recruitment has not yet begun but as soon as it does she will be calling me. She's confident her study center will be one of the ones included in the trial as she has 6-8 patients who would be wanting to participate.

That would give me 5 more years of not worrying how I'm going to pay for this stuff while also trying to get my act in gear to figure out SOMEthing to do about my lack of health care coverage.

Coincidentally I went to bed last night staring at the ceiling wondering what the future held for me and how I can solve my healthcare dilemma and today I wake up to yet another prayer answered, even if only for a short while. Someone upstairs is watching my back for sure.

2 comments:

  1. Wonderful, wonderful news all 'round, Jeri!

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  2. It is such a good thing that you are able to continue with Gilenya while you tell others about your experience. I think it sgould be for life.

    By the way, Hi Michael, I wrote a short article in which I referred to you. Just thought I would give you a heads up.

    http://www.healthcentral.com/multiple-sclerosis/c/32873/142871/making


    Thanks for your story, Vicki Bridges

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