Skip to main content

Cushing's and Death

Today I logged onto the Cushing's Support Facebook group and heard some horrible news. A fellow Cushie from our community had lost her battle with Cushing's. Sarah was 28 years old, and has had two pituitary surgeries to attempt to cure her of this horrendous disease. Story sounds familiar, right? She posted on Saturday in our group begging for help, her doctors weren't listening to her when she said she still felt sick and that something was wrong. Days later, she is gone.

I have spent the past half hour in shock. I'm devastated for her lost life and her family's loss, I'm angry at her doctors for not listening, I'm frustrated with the medical community as a whole for not taking this FATAL disease more seriously, and I'm relieved, because it wasn't me. I feel guilty for feeling that, but it could've SO EASILY been me at this exact time last year. After my two pituitary surgeries, my illness and complications grew exponentially. I was gaining weight faster, having higher blood pressure and increasing heart problems. I had trouble getting around and doing simple things like walking up the stairs. Thankfully, it wasn't too late for me by the time I got to my surgery in September. Yes, I am dealing with another disease for my entire life that is also potentially life-threatening, but I am able to get some of my life back.

I'm planning to go to school in the fall - something I never could've planned for even just a year ago. I hope to someday help people with this same disease that has taken the life of this woman too young. More has to be done.

We love and miss you Sarah.

Comments

Post a Comment

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
Post a Comment
Read more

Yet another health update...

As many of you know, things haven't been that great with my health lately.  I just had an appointment with my endocrinologist at MGH that was very informative, although not very exciting.  My ACTH levels have increased dramatically since a few months ago.  This is to be expected after a BLA and since I likely have tumor tissue left in my pituitary gland, this wasn't too surprising.  She seemed a little concerned about this recent increase and took a look at my MRI from July.  I hadn't actually seen the images, I just read the radiologist's report that said everything looked normal considering the 2 surgeries.  She thought my pituitary stalk looked pretty enlarged (the stalk comes up vertically from the gland and connects it to the hypothalamus).  This could be because I have tumor growth, which would make sense because of the increased ACTH.  She is going to have my neurosurgeon look at the MRI to see what he thinks, at the very least this increases my MRI intervals to
2 comments
Read more

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
5 comments
Read more