Skip to main content

Cushing's Awareness Challenge - Day 19 - What Cushing's has Taken from me

This is a topic I've been trying to avoid since I started blogging every day.  I wrote about a similar subject, how my life trajectory has changed, but at least there were some positive things there.

What has Cushing's stolen from me?

Cushing's stole what little self esteem I had before this mess.  I have always been very self conscious and embarrassed about my body.  I felt like I was never thin enough.  I look back at pictures and now would give ANYTHING to look like I did when I thought I was fat.  I didn't know then how bad it would get.  At almost 300lbs before my BLA, I took a weekend away with one of my best friends.  While I was changing into my bathing suit in the hotel bathroom, I couldn't stop staring at my self - I had had no idea how big I was until I put that bathing suit on.  My thighs were huge and dimpled, my belly looked like I was nine months pregnant (I often pretended I was to people who would ask), and I felt awful.  I still feel like I have a long way to go, even after losing 100lbs.

Cushing's stole my friends.  I have not been good at maintaining friendships the last few years.  I have a solid 1 friend from high school that I still talk to, and almost none from college that I talk to on a regular basis.  I used to feel so guilty about that and hurt, until I read or heard someone say that you don't have to be upset when friendships end, they were your friend when you needed them most but sometimes good friends do not last forever.  I couldn't have gotten through college without them, and will always love them but I don't have to be sad about it anymore.

Cushing's almost stole my life.  Not only did I spend a night in the hospital with 4 or 5 doctors and nurses watching me at all times while they poured ice on me to try and get my fever down when nothing else was working (my mom thought I was going to die that night), but Cushing's brings on a depression that I have never known before.  I have constantly felt like I'm not good enough to keep living and I couldn't deal with one more day of doctors appointments and illnesses, but somehow, I don't know how, I get through the day.  I have had conversations with my mom about what I want her to do if anything happens to me after hearing about deaths of other people with Cushing's in our support group.  I wrote letters to my family and friends and store it on my computer just so my family would know that I loved them.  I never imagined much of my early twenties would be spent hoping I'd get through the night.

Cushing's stole a lot from em that I could have never guessed, but I am one of the lucky ones, that didn't have a heart attack or stroke from the stress on my body.


  1. Hi!

    I've been following your blog for a couple of months now. I'm from Norway, so i'm sorry if my english isn't good. I'm in the process of getting a diagnosis, and the doctors highly suspect Cushing's. Some of my concerns about Cushing's is if it's possible to have children. Do you know anything about this?

    I understand if this is something you do not wish to talk about.

    I wish you all the best!

    Sincerely, Carina

  2. A lot of people, some even WHILE they have Cushing's, can still get pregnant. If you end up having pituitary surgery you may need to discuss with your doctor if there are any hormone deficiencies that need to be corrected so you will have the best chance. A lot of the women I know with Cushing's have had children.


Post a Comment

Popular posts from this blog

Cushing's Awareness Day

Over the past 8 years, I have spent a few Aprils blogging every day for Cushing's awareness.  I will not be blogging daily this year, but don't want to let the month go by without spreading some awareness!

April 8th is Cushing's Awareness Day because it is Harvey Cushing's Birthday.  Harvey Cushing is the father of modern neurosurgery, and he also was the first to discover Cushing's Disease in one of his patients.  You can see a drawing of his patient (Minnie G) in many text book articles about Cushing's.

2 Years Since my Adrenalectomy...would I do it again?

On September 2nd, 2010, I spent the day in one of the many operating rooms at MGH.  I had spent the night before talking and texting to friends and family, after seeing Wicked and going back to the hotel across the street from the hospital.  I cried a lot, because of the scary and fairly dangerous surgery ahead, because of the hope that this disease would FINALLY be behind me, and because of the long recovery ahead.  I woke up early and walked across the street with my mom, and my dad met us there.

The wait that morning was incredibly long, my 2 other surgeries in the 9 months prior had been very early and a pretty short wait.  I cried some more (no one should be surprised by this), and finally headed into the prep room.  I met with my surgeon one last time, and kissed my parents one last time.  As I waited in the cold, dark, cement hallway outside the numerous operating suites, a surgical resident marked the incision sites.  I knew there would be many small incisions, but having the…

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 return…