Skip to main content

Cushing's Awareness Challenge - Day 2

A lot of people would think blogging about your personal health issues or disease would be too personal, and too revealing.  Why would someone want to reveal personal details about themselves online?

For me, it is not about giving all the dirty details.  It's about raising awareness, providing support to others with chronic illness, so they know they are not alone.  It's about the person reading this blog, that thinks they might have Cushing's, who might get help a little sooner than they would have without reading my story.  It's for friends and family, so they know what's going on in my life, with my health, without me having to tell the story over and over again.

It's been a little while since I gave a real life/health update, so I figured I would include that in this post.

As you might have read yesterday, I am having a PET scan on Monday. The hope is, we will either find a carcinoid tumor, or something along those lines that is responsible for some of the symptoms that have been plaguing me for the past few years.  And if not, we will move on to other possibilities, instead of wondering forever if I might have more neuroendocrine tumors.  I don't know what to hope for anymore.  I've spoken about this before, hoping that something is found, no matter what that something may be.  It's a target to focus on, a challenge to conquer, instead of a mystery.  Before I was diagnosed with Cushing's, I used to hope for a diagnosis, ANY diagnosis, that would solve the mystery, regardless of what came next.

I have that same feeling, but this time, with a sense of dread.  I dread the results of this scan. I am so scared of them finding nothing.  Being at another dead end.  I'm also scared of the possibility of another tumor. The surgery or treatment to follow. I don't really know what to expect.  I do know that whatever is found, even if it's nothing, I've conquered worse.  I've been through worse.  

Comments

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…