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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 hardest part, not having all these important people around me when things got tough.  Of course, there are those precious few that stuck by me through all of it, but not without challenges.

They asked me to compare how I feel now, to before Cushing's, and that's something I don't know how to answer.  I don't remember before Cushing's, I don't know if there is a before Cushing's.  Maybe I've had Cushing's since the day I was born, maybe since I was 12 or 13 years old, I don't know what feeling "normal" is.  We talked about being without steroids for months, and how no one can believe that I am still alive.  I also gave them some insight on how different my life is than most people my age.  I can only work part time, a good year was only being hospitalized twice, and by hospitalized, I mean being admitted.  Emergency room visits are still a normal, regular 4-5x a year occurrence.    

Oh, did I mention that even my endocrinologist, who has been with me for 5 years, was crying by the time I finished?  Even she learned things she didn't know before!

I think it was an unbelievable experience, and hopefully will be able to do it again in the years to come. 

Comments

  1. I'm so proud of you for sharing your experience and giving those students an insight to the horrors and vast differences of cushings disease. Its very brave of you. :) and so awesome! I'm sure they will never forget it.

    As I was reading your post I was thinking about my own experience and how I would explain it to someone else without a lot of tears and feeling sad/sorry for myself... and I don't know that it would be possible (I'm still extremely emotional), but you know what? I'm 100x stronger having gone through it. And because I hit rock bottom with my health, I can appreciate where I am right now and being able to go upstairs without trouble, not 400 weighing pounds... and with the increase of my strength and stamina, my confidence has increased too. I'm not where I thought I'd be. I thought I'd be 'well' by now, honestly.... but Its proof that there can be a little sunshine through the rain. :)

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    Replies
    1. Thanks Christen! I always love your thoughtful comments! I don't have any fear of speaking in front of so many people, and talk about my health a lot, but the combination of the two made me cry! It's so hard to explain the toll that Cushing's takes, it's not just a disease or a tumor, it's a systemic, life altering, potentially life ending disease. The life threatening is what people don't understand, because I'm the only people my friends know that had Cushing's.

      I'm so glad you are seeing some sunshine, FINALLY! Hopefully it all gets better from here!

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