21 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. 7, then the project fails and all the money raised goes back to the donors.

In order to help raise awareness of FMD Chat and its goal, I have taken up the tactics of public radio's listener support fund drives—nineteen days to meet our goal, nineteen posts to show you what it's been like, and what it continues to be like, to be me, a patient with FMD. Today, marks day two.

WARNING: it's going to get graphic. 

: help FMD Chat reach its goal before I get to the emergency surgery pics. 
Day 2
This is my neurologist's office.
I have been his patient since April 2008. 
At age 28, and after three days of an intense earache,
I suddenly was overcome by dizziness.
An ambulance was called.
I don't remember much of the next 24 hours.
Despite pronounced Horner's Syndrome,
the hospital doctors said that I had vertigo
and that it would go away as quickly as it had come on.
They were wrong. 
It was at home that I discovered I had 
lost my senses of pain and temperature on my right side.
Concluding that this was abnormal,
I made an appointment with my family practice doctor.
He too concluded that something was wrong
and referred me to the neurologist.
My neurologist, diagnosed an ischemic stroke.
More than four years later,
I still have deficits.
More than four years later,
I see my neurologist at least twice a year.

20 August 2012

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.

: 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.

16 August 2012

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 social media. It's been a whirlwind year marked by so much learning and inspiration and passion that I have admittedly somewhat lost myself. There is little to no time to spend in quiet reflection. Instead there are things to be done. Tasks to accomplish. Goals to achieve. And even before I have ticked one off my list, I've added another.

This stubborn drive is a hallmark of my character, for better and for worse. Increasingly, I am hearing the calls from friends and family to slow down, that they don't know how I do it all, that it doesn't all have to be done at once. In large, they are right. The sticking point is that I am keenly aware of working with a potentially limited clock. We all are working with a potentially limited clock. What bothers me is that my heightened awareness of this clock makes me push against it to complete the tasks that I have decided are important to me before time expires. I want to make a difference. I don't want fame or fortune. I simply want there to be some lasting indication that I was alive.

Recently, the arts-based healthcare advocate Regina Holliday told me that people are inspired by—and more willing to get behind—that which we present as our life's work. She is one who would know. She wears her heart on her sleeve in all the right ways. I tend to be a bit more quiet. I am an advocate of opportunity, plugging doggedly away for a cause that the overwhelming majority of the world couldn't give a damn less about. We in the rare disease club are, as individual diseases, fractions of populations. The rareness of our diseases not only isolates us as patients in need of care, it isolates us from the support networks that drive awareness and research of the more common diseases. Frankly, I can not imagine a world in which I will never have to spell fibromuscular dysplasia and explain it as a rare vascular disease for which there is no cure. Because I can not imagine that world, I am trying to create a world in which fibromuscular dysplasia patients like me do not feel so alone. My philosophy for creating an organization dedicated to fibromuscular dysplasia is based on my own desire to be treated with compassion and dignity, to encourage camaraderie among patients, to provide resources for caregivers, to foster interest within the medical community. I want to create the kind of environment that addresses the diagnosis from a whole patient perspective, that provides the type of care that I, as a child, teenager, young woman, and now spouse, have needed.

Nothing about advocacy is easy. To do it wholeheartedly means to give up much of oneself. What drives me onward is what I get back. It never ceases to amaze me how much our little community of patients cares about one another. Participants notice when someone has been absent for awhile. They reach out. These small communications are so important. They represent never having to be alone. They represent empathy in its truest form. I never thought that I could care so much about people whom I have never actually met. These people, these patients, these participants, are part of my heart.

So I push. I take on more than I should. I neglect the kitchen sink full of dishes and use Google translate to write an email in Italian to reach out to a rare disease group half a world away. I plan another fundraiser, contact another doctor, tweet out another link. It is all consuming. It is exhausting. It is what I both dread and desperately need. And I need you. I need for you to care. There are so many passions and tremendous causes angling for attention, and it is oh so easy to tune out the many pleas while going about one's daily routine. One says no, looks away, moves on, and assumes that someone else will step up and step in. In order to effect change—any kind of change—we must each learn to care, to engage, to give of ourselves. Whether you give to my cause or to any other, give yourself, give your heart, give your time, give your talent. Give without expectation of what you will get, but with an openness to the possibility of receiving more than you expected.

Help FMD Chat reach its $5,000 goal by Sept. 7.

13 August 2012

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. 
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