Friday, January 30, 2009
I certainly have had a lifetime of being a leader of brownies and girl scouts (my sister and my daughter), I volunteered in most of my kids elementary school classes, room mom for many of those same classes, several political campaigns in my 20’s and let us not forget the years I spent raising the children of over 75 sets of parents. Okay, I did get paid for that-but let’s face it, no pre-school teacher or day care provider ever gets paid their worth.
The last 6 years I have been volunteering my time getting the word out to hesitant (read that old-fashioned) rheumatologists and their staff about using biologics before a patient with one of several different forms of autoimmune based arthritis get to the severe stage of the disease.
What was that mumbo-jumbo you ask? Patients with rheumatoid or psoriatic arthritis, psoriasis on its own and now several other forms of arthritis do not only have the pain of arthritis, but in their blood streams as well. I’ve mentioned in several blogs that I have rheumatoid arthritis. When the arthritis is of the auto-immune type, such as mine, we have all the usual pain associated with the joint disease plus we have added bonuses. Those bonuses being that we are more prone to infection, other diseases-such as certain cancers, heart disease and a host of other fun stuff.
6 years ago, with the urging of my rheumatologist, I was put on Enbrel, the self-injected biologic from Amgen-Wyeth. After years of horrible pain and misdiagnoses this one drug had me starting to see the “light” of having an easier life within 3 weeks of my first injection.
I saw a web address for VibrantLives on one of my boxes of syringes asking for volunteer speakers. Being a ham, I signed up. Amgen and Wyeth like to set up events for various rheumatology offices around the country, radio stations, TV stations and support groups for us to tell about our experiences. We mainly talk about what our symptoms were, what we went through with various doctors before finding the one that really listened to us and our pain.
We tell about our personal “Molotov” cocktails, which include Enbrel (I’m sure remicade, humira and orencia all have their own cheerleading group) and talk about how we are today.
None of us say “life is perfect”, but we do describe our bad days pre and post Enbrel.
I’m getting long-winded here, so let me cut to the chase about why I think the volunteer always gets more out of the work than the intended:
This week I was sent to a lovely resort in the heart of Carlsbad, California. This time it was to thank me and three other volunteer speakers and introduce us to not doctors (although some there were now in the research end) and their staffs, but too many of the fine people of Amgen who never get to see who their drug helps. It gave them faces, personalities and stories that until this point they could never perceive.
They thanked us profusely for sharing our lives with them. One researcher said that until this dinner all she knew were “facts and figures” and that “now I have real people to connect my work too-now I feel a tug in my heart to know I’ve helped you and so many others lead more fulfilled lives”.
It was also really nice to talk to the other patients and hear their stories. I know mine and frankly I get tired of hearing it. How many times can anyone hear their life story before running out screaming?
Now I too have other faces and stories to think about, which reminds me that when I speak for me, I speak for them and many others as well.
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