Skip to main content

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. :)

    ReplyDelete
    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!

      Delete

Post a Comment

amazon audible

Popular posts from this blog

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…

Cushing's Awareness Challenge - Day 4

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?  
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was.  I wouldn't be questioned by my boss when I called in sick.  My friends and family would be more supportive.  My doctors wouldn't question my symptoms.
Maybe my life would be easier.
But, maybe this would not be true.  I am not looking to find out.  Chronic illness is lonely.  It seems, from the outside, that cancer is not.  Most people know someone with cancer.  Most people know what cancer involves.  Endless appointments, surgeries, maybe even chemotherapy or radiation.  Cancer is life threatening. Did you know that a lot of chronic illnesses involve all of the same things?  
With Cushing's, a lot of people have multiple surgeries.  I have had 3 directly related to Cushing's, and…

Cushing's Awareness Challenge - Day 12

Today's post is a little bit out of my comfort zone. We're going to talk about weight.
One of the most common symptoms of Cushing's is weight gain.  Some people only gain 30 pounds, some gain hundreds.  I always have a hard time quantifying the exact amount I gained because I was a teenager, or even a young child when I first had Cushing's symptoms.  My best guess is about 150 pounds, only because that is close to what I've lost after treatment.  
When you weigh almost 300 pounds, people treat you differently.  I know this, because I've also seen how people treat me now.  
I was obese, due to Cushing's, throughout college. In my opinion, this is one of the most difficult times to be heavy. My first year of college, I was often left out of plans.  My two roommates were very close, and I always felt like the third wheel.  One of them even left a letter she had written to a friend out for me to see.  It was one of the cruelest things I had ever read.  She was wis…