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Showing posts from March, 2014

Where Do You Follow Me?

Now that my beloved google reader is long gone, I have had time to experiment with a few different sites to follow all my favorite blogs.  I tried The Old Reader, which I liked because it was almost identical in the way that it works as Google Reader.  I tried a few others that I didn't love, and then I saw someone using the bloglovin app on an iPad, and knew I needed that in my life.  I loved the visual impact, and started using it that day.  I have found new blogs to follow, and was easily able to import all my RSS subscriptions.

What reader do you use for blog reading?  Where do you follow me?  Do you still miss Google Reader (I finally don't anymore!)





Educating Medical Students

A few weeks ago, I had the opportunity to speak at Harvard Medical School about my disease.  My endocrinologist does a lecture on pituitary disease, and I went with another patient of hers and talked about Cushing's Disease, and my adrenalectomy.

Of course, I was about to cry before I even opened my mouth to say anything, but that's pretty normal for me these days (stupid hormones).  I talked about my dreams 10 years ago before I knew I had Cushing's, how I had planned to be sitting in their seats, in medical school or even finished with school by now.  I went through my whole story, from seeing 5 different endocrinologists, to testing for more than 5 years, to how it was not one of those endocrinologists but my gynecologist who really diagnosed me with a pituitary disease.  I talked about getting so many parking tickets because my legs were too weak to walk up the hill to class, and how it's so hard to be a good friend when you are sick, and that was probably the har…

Rare Disease Day

Yesterday, 2/28 was International Rare Disease Day.  Most rare diseases are genetic, chronic,  serious, and debilitating.  You can watch the 2014 video below, as well as check out the Rare Disease website here and find out if your disease is rare.



My rare disease is Cushing's Disease.  I am a survivor of Cushing's Disease.  Many of these rare diseases are treated in help with the Orphan Drug Act, which gives pharmaceutical companies grants to develop drugs that can help people with rare diseases.  You can read more about the Orphan Drug Act here.

Unfortunately, I did not do a whole lot to raise awareness of Rare Disease Day this year.  Of course, I shared this video and posted some information on Facebook, but I did not talk about it much. Part of that reason was work, I am trying to limit talking about Cushing's and everything else going on medically.  Many people have different opinions on what is going on and what you should do about it and it's become an issue wher…