Monday, December 12, 2016

Another Anniversary

I met my husband in early 2002 and we got married in 2005, then everything changed. We had about three months of a me-being-healthy marriage before my health got the better of me.

We married in May and in August I ended up in the emergency room because I had (previously unknown to me) uterine fibroids, one of which decided to die off which caused a massive internal infection, intense pain, ambulance trip to the ER, followed by several days on an IV antibiotic and a week of bed rest at home (when the roofers put in a new roof).

Exactly 11 years ago today, I had a open hysterectomy where they removed my uterus (and all the evil fibroids) and one ovary. I spent six weeks at home before returning to work in downtown Boston. During those six weeks, I was not supposed to climb stairs at first and was allowed one trip down in the morning - with help from my husband - and one trip up in the evening. I slowly got better but it was a fairly big surgery and it took quite some time to get back to 'normal'.

Before that I was healthy and we did a lot of fun things together. A month after my trip to the ER, we were hiking in Lake Tahoe. For another 17 months after, I remained relatively healthy - meaning no trips to the ER or anything. Then I went for my annual mammogram and things went further down hill - healthwise.

It was eleven years ago today, I learned how to be a patient with online health resources. When I was told I needed a hysterectomy, it had been about 4 years since my previous surgery - meniscus repair after a bad day of skiing - and I hadn't really cared about research at that time. But with a hysterectomy? That was a completely different story, now I needed some information.

I started by asking my friends (the doctors gave me a pamphlet or something else just as useless) and found one who had a friend who had a hysterectomy who sent me to hystersisters.com. I signed up and learned about the world of online, patient supported communities where patients help each other. It was a wonderful change.

Before the internet, patient information was very limited. After the internet, it still took a while for the internet to switch from academia/education/science (it was created by a bunch of geeks) to the general public, and then us patients. But I digress...

In the weeks before my hysterectomy on December 12, 2005, I learned for the first time the benefits of patient supported online communities. I found a friend who had a friend who sent me online for information. It was so much better to find the support of strangers who reach out with a hand for support and their knowledge to help someone who went through what they did.

This is an anniversary to celebrate - when I first learned about online patient support.

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