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Showing posts from August, 2012

19 Days of Living with FMD - Day 2 - A Rare Disease in Focus

Eighteen days - that's how long FMD Chat, a fledgling nonprofit organization dedicated to those affected by the rare disease fibromuscular dysplasia, has left to raise $1,274 more dollars in order to reach its MedStartr goal of $5,000. Why do I care? Because I have fibromuscular dysplasia and FMD Chat is my organization. FMD Chat relies on social media to connect patients around the world with the peer-to-peer support that makes living with a rare disease less of an isolating experience.

What is MedStartr? MedStartr is a crowdfunding platform specifically designed for healthcare. It's like Kickstarter, but not. It has given FMD Chat access to a group of potential donors who would never otherwise know about or have interest in contributing to a small group of rare disease patients. However, many donors still remain "potential" donors and the small group of rare disease patients still need donors' support. If FMD Chat does not meet its $5,000 funding goal by Sept.…

19 Days of Living with FMD - A Rare Disease in Focus

Sometimes it's hard to understand just what it means to be a patient. It's even harder to understand what it means to be a patient with a rare disease. So - I'm going to show you.

To put it very bluntly, fibromuscular dysplasia has tried to kill me many times before. I'm doing my best not to let it. FMD Chat is raising funds via MedStartr, so that the organization can grow to support more fibromuscular dysplasia patients like me around the world.

FMD has no cure, but at the very least we can care. We have 19 more days to raise $1,274 dollars, so for 19 days—or until we reach our goal—I'm going to show you what it's been like, and what it continues to be like, to be me, a patient with FMD.

WARNING: it's going to get graphic.

DON'T WANT TO SEE IT
: help FMD Chat reach its goal before I get to the emergency surgery pics.

Day 1 This is my right kidney.
It is the only kidney I have.
My other kidney was removed when I was 29,
after my renal bypass failed.

Living & Giving Wholeheartedly

It's 3:30 a.m. I have not yet been asleep. There's too much to do. Too much to worry about. I am counting down the days until October when, as of right now, each day does not bear a color-coded task to be completed. Right now, the only things that have to be done in October are return from the Medicine X conference in California, meet my editorial deadline for the magazine of which I am editor, go to the dentist, and send the magazine to press. I should also probably celebrate my wedding anniversary.

The problem is that between now and then I will inevitably create at least a dozen more things for myself to do. I am responsible for at least half of my heavy load. Glutton for punishment, I fill my time with intensive responsibilities rather than enjoy the company of those I love and the things I like to do. The matter is complicated by the fact that I enjoy my self-imposed work. September will mark a year's time since I truly threw myself into the realm of healthcare and so…

Lament for the Fifth Cranial Nerve

My right side
is my dead side,  where the nerves fried,  but I tried  to piece it back together.
My left side was my bad side, would just abide, but my pride forced me to be its master.
My inside is where I hide and confide that i lied, it long stopped getting better.


Posted on the occasion of a friend having also become a young stroke survivor. 
Learn more about the signs of stroke