Skip to main content

Remember that time I had Cushing's Disease?

My Cushing's Dreams are finally coming true - in 2 days (!!!) I get to speak at HARVARD Medical School!  My endocrinologist teaches a session on pituitary disorders each year, and this year asked me to come along.  I have a brief presentation prepared, mostly pictures of me over the years, gaining more and more weight and becoming more symptomatic.  I will answer questions at the end also!  I have done this once before, as you may recall, but other people did the speaking for me.  My friend in PA school did her final group project on my Cushing's journey, so it's nice to have a little experience under my belt.

I mean, really though, I talk about Cushing's all the time.  It's not like there's a week that goes by where someone doesn't ask me about it, or I talk to someone about how I was once 285lbs.  I find myself mentioning it all the time.  Just recently, I showed a coworker a picture of myself close to my highest weight, and she couldn't believe it.  My mom was even surprised at the pictures in my presentation, now that I look like myself again, she forgot how big I once was.

If you remember, I had that same reaction to the first photos of myself as a 160lb person.  I couldn't believe that was me!  I still saw this 285lb person when I looked in the mirror, but the reality was much different to everyone around me.

Let's look back.  I'm sure some of my loyal readers won't remember how Cushie I looked just a few years ago.













Crazy, right?  That last one was about a week after my adrenalectomy.  SO swollen from steroids.  I'm excited to enlighten all these 2nd year medical students on the horror of Cushing's and the value of a physician that doesn't dismiss your complaints of "something is definitely wrong".  Just one endocrinologist made a huge difference in my life by believing me when I knew something was wrong, she saved my life!

Wish me luck on Tuesday, I'll talk to you after Harvard!



Comments

Popular posts from this blog

Talk About the Sh*t you Don't Want to Talk About

I haven't updated this blog in a very long time.  I actually deleted a ton of posts while I was applying for social security disability. I posted about Cushing's Awareness day earlier this week on facebook, so I guess I'm in a sharing mood. Anyway, for anyone who even reads this, I was watching a documentary on Netflix about a teenager with anorexia and mental illness who found meaning in her life through yoga. (It's called I Am Maris). It's kind of the reason for this post. To start - let's go back to June 2018. My grandmother died.  She lived a wonderful long life, but it was especially hard on me.  She was the reason I got out of bed every day, my best friend, and so much more. I actually don't remember how I got through most of the summer. In the span of two weeks at the end of August, my mom turned 60, we went on a family vacation to the vineyard, my best friend got married, and I wanted to kill myself.  Yeah, you read that right. The day after re

The Challenges of Getting a Diagnosis

I have been asked about this so many times, and talk about it a lot, whenever someone asks me about Cushing's.  So many people have the same experience - KNOWING you have Cushing's, and seeing 5, 10, 20, or more doctors over the course of many years before you officially have a diagnosis.  I would say this is one of the most common links I have with other "Cushies".  We all fought for a diagnosis, heard we were just fat and depressed, waited with hope after every test, until a day came when one test came back high, or a brain MRI showed a tumor in the pituitary gland. I think the reason I haven't written about it is because it's one of the hardest things to sit down and spend time on.  It's painful, and of course, I can't help but wonder what my life might be like today if I was diagnosed sooner.  Would I have needed an adrenalectomy?  Or for that matter, a second pituitary surgery? Would I have as many health issues after Cushing's?  It's ha

Cushing's Awareness Challenge - Day 23 - The Diagnosis and Treatment Process of Cushing's Disease

For many people with Cushing's it takes months, years, or even decades before finally getting a diagnosis and help.  For me, it was 5 years from when I thought I had Cushing's until my endocrinologist told me I did indeed, have Cushing's Disease. Once you read about Cushing's and think it sounds just like you, here's what you will have to do to get rid of the excess ACTH or Cortisol source 1. Find a reputable endocrinologist that other people with Cushing's have had good luck with.  You can find a list on Cushing's Help  HERE .  You can also ask someone that has been diagnosed on the Cushing's Help boards or on the Facebook group which doctors they see. 2. Make and appointment, and be patient!  Sometimes the endocrinologist has to do multiple tests over a period of time, and those results can take a while to come back.  Some tests to expect are 24 hr urine free cortisol tests, midnight salivary tests, dexamethasone suppression tests, or random/midn