How long has it been since I’ve visited my blog? When I finally opened my last post that said, “under construction”, I realized it has been 7 weeks. I had so many plans for my new life as a health advocate and yet life keeps getting in the way. Or, am I getting in the way of life? I’ve always been very goal oriented, never missed a deadline, and have accomplished in most cases exactly what I have set out to do, unless of course my health got in the way.
My dad has
been very ill since July 24th so I dropped everything in my
path to care for him. Who wouldn't do that for their dad? This is a man who put himself on kidney dialysis, at the age of 88 yrs, old because he lives an active life. Kudos to dad! I'm so proud of his choice to live.
Two months prior, I let my work stagger because of my own health problems. I have been working so hard to prepare myself for Stanford Medicine X.
What is Medicine-X?
Two months prior, I let my work stagger because of my own health problems. I have been working so hard to prepare myself for Stanford Medicine X.
What is Medicine-X?
Several months
ago my twitter mentors suggested that I consider applying for a scholarship as
an e-Patient Scholar to Stanford Medicine X, in California. It sounded both exciting and interesting but
I really had no idea what it was all about. At the time I was like a sponge
soaking up everything and anything I could to learn about empowered patients
and how to advocate for my rare disease, Cryoglobulinemia. I followed through with the application and
to my surprise I qualified and was accepted.
This was an honor for a newbie e-Patient and a responsibility I took very
seriously. I was now motivated to work
even harder to learn all that I could about healthcare social media, global
rare disease networks, my disease and anything else that would empower me to be
the best e-Patient I could. Everyday was
a new adventure as I traveled through this new world that was opening up before
my eyes. Many times I felt less than
adequate like a new college student who never finish high school. I was
learning a new language, meeting new people in an industry I had never venture
into before. But I was in love with
learning and sharing all that I discovered to help my community. It is overwhelming
yet exhilarating.
So I have
to ask myself, since my plans haven’t gone exactly as I had anticipated leading
up to Medicine X, should I still go? Am
I still qualified? I have not accomplished all that I have set out to do by the
end of September for the conference. My
website isn’t up for my rare disease. My
blog has fallen through the cracks. I didn’t start my fundraiser and haven’t been
able to keep up with my twitter contacts and friends. No, things haven’t gone as planned but I
still am an empowered patient seeking answers not only for myself but also for
all rare communities. What I have learned are life lessons on this detour.
For me,
life is about exploring new territory, knocking down roadblocks, adjusting to
change, accepting each day as it presents itself with gratitude and reverence
and being true to the person I am.
Laughingnana
Cares about her Dad
@mvennitti
@mvennitti
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Please contact me at mvennitti@allianceforcryo.org if you would like to know more about Cryoglobulinemia Vasculitis.