Planning The Unpredictable

Being a bit of a computer nerd, patients like me is kind of up my alley. It is a new idea that sharing information with other patients makes for happier and healthier patients. They believe in the Openess Philosophy which is the complete opposite of all the HIPPA/privacy laws out there:

Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.

Every patient has a provide with history of relapses, symptoms, medication, and weight (haha!). It is open to all members (well you can turn that off but most have it open) so you can get a good idea of how others are doing and what medications they are on. While web boards for medical conditions is nothing new (web md has been around for years), the idea of sharing such personal information is new.

I have worked at a couple startups before and while it isn’t really for me, I respect the work that they do. So, I was thrilled to receive an email last month asking if I wanted to be in Patients Like me patient spotlight. I said sure and happily filled out the questionnaire. Here are my answers if you are interested:

GETTING TO KNOW YOU

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we interview patients each month to find out more about how they approach life. This month we are pleased to feature ninaf, a three-star member from Seattle, Washington.

1. What brings you joy?

The three things that bring me the most joy are:

Traveling - I love to see and experience new things. This summer alone I went to Montreal, Boston, London, Rome and Vancouver.
Photography - I have always loved photography and all my traveling has allowed me some great backgrounds for my photography.
Being at home - My tiny condo is a calm place to just be. It is filled love thanks to a cute cat and a lovely boyfriend.

2. Is there a movie/TV/literary character you identify with?

The first one that comes to mind is Penelope Garcia from “Criminal Minds.” She’s the nerdy computer geek. That is pretty much me. I spend my time messing around with Linux, FreeBSD and networking hardware.

3. What is your biggest challenge - and how do you manage it?

If it is MS related, I would say two things. The management of the illness is annoying. I get tired of going to the doctor, pills, shots and all the “other” crap that comes with it. I have very little sympathy for those that complain about going to the doctor once a year.
The other challenge is what to blame. Is it the illness’ fault that I am tired or staying up until 1:00 a.m. watching Tivo? Am I stiff because of MS or because I went to the gym last night? My head has one of these questions at least once a day. I am always trying to calculate if the illness has advanced or if it’s normal.

4. How have family and friends responded to your condition?

I have always been a loner. So when I went blind in May 2008, I drove myself to the eye doctor without telling anyone what was going on. I think I assumed that they would just give me a pill, and I would be on my way. A bad diagnosis didn’t even go through my head at the time. I mean, I was 29 and pretty healthy.

When the eye doctor wanted me to come back the next day for more tests, I decided I probably should tell some folks. I called my parents who were living in England at the time. My father offered to fly home but that seemed kind of silly. I mean, they were just going to give me a pill right? My boyfriend was in Chicago on business so I was home alone at the time. He asked me a question which didn’t even cross my mind: “Are you going to go blind?”

I drove myself to the doctor the next day for more tests. The eye doctor noticed that one of my pupils was not dilating correctly. I am a bit of a medical nerd, so I knew that was not good news. I finally had enough guts to ask the eye doctor if I was going blind and what might be the cause of this. It was then that she said multiple sclerosis.

I went to my car and broke into tears. I called my boyfriend, and he said “Are you going to end up in a wheelchair like those kids?” It took me a second to realize he had MS confused with MD. Never a dull moment in our relationship. I spent that weekend calling family and letting them know. I think most assumed I was overreacting, that it couldn’t possibly be MS. Exactly a week after going blind, I had the results for the MRI. It was indeed MS.

The reactions from my family over this were varied from “it’s no big deal” to tears. I think I prefer the tears over the “it’s no big deal.” I was pretty upset over the diagnosis, and the “it’s no big deal” was pretty invalidating. It is a big deal. It’s my big deal now.

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