Skip to main content

September 2nd - RIP Adrenal Glands!

My BLA is scheduled for September 2nd.  It's real now!  I will finally be trading up - getting rid of Cushing's Disease in exchange for Addison's Disease.  Nothing else too exciting to say about that.  It seems so far away but too soon all at the same time.

Recently I've been wanting to steal every single one of Melissa's blog posts :)  Go check out her blog at Cushing's Moxie - Fighting the Worst Disease You've Never Heard Of

This article made me really sad - the emotional and cognitive symptoms of Cushing's have definitely been some of the hardest for me to deal with.  Academics came easily to me throughout middle and high school, but once I got to college I started having trouble focusing and couldn't seem to wrap my head around complex concepts.  I couldn't study for tests, I felt like I had no memory.  It didn't help that my messed up sleeping pattern made me too tired to go to class some days.  Everyone (myself included) assumed that the freedom of college and lack of structure was to blame for my horrendous grades.  I seemed to fall behind at the beginning of every semester with some sort of disaster, then never caught up.

After being diagnosed, it was so validating to hear that I wasn't just lazy and stupid - something I thought I had known all along but definitely doubted sometimes.

This article describes the effect Cushing's Disease has on the brain.  It's scary, and I hope after my surgery in September I will start getting some of my brain power back!

Irreversible Effects of Previous Cortisol Excess on Cognitive Functions in Cushing's Disease

Comments

Popular posts from this blog

Plastic Surgery

When I was 17, I thought about getting a breast reduction.  I was still pretty thin at this point and it bothered me to by bigger clothes just to fit my bust.  I had a hard time exercising and always had back pain and grooves in my shoulders where my bra straps sat. I had a few consults with different plastic surgeons and ended up scheduling surgery for the week before my high school graduation.  I ended up "chickening out" because I didn't want the surgery to have any impact on my graduation, and I hadn't had any major surgeries before.  I started gaining weight due to Cushing's shortly after, so it worked out for the best in the end.

Now, my breast size has gone way down since I've lost weight, and even though they are still bigger than average, they don't get in my way as much and are more proportional to my body. These days, my plastic surgery dream is to have a tummy tuck.  I have a lot of excess skin on my body, especially on my belly, and in a drea…

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…