Skip to main content

Cushing's Awareness Blogging Challenge

Yes, I'm doing it again!  I'm going to be blogging for 30 days in April for Cushing's awareness.  If you have any posts you want to see, or any ideas to get the word out about Cushing's, let me know.

Today, I'm going to be talking about my Cushing's story, which still continues, even 8 years after I was diagnosed.

I remember the moment I realized something wasn't right.  My mom was taking me to the mall, because none of my jeans fit me anymore.  She was talking about how she wished I would try to lose weight, because she has been overweight most of her life, and didn't want that for me.  But, I needed pants to wear to school, so I bought another size up.  I remember thinking, nothing has changed.  I didn't eat more, or less, I hadn't stopped any activities.  Maybe this was just my metabolism slowing down.

The summer before I went to college, I taught swimming lessons.  I was in the pool ever single day, swimming laps myself in between lessons. I was having a fun summer with friends, went on vacation with my family.  But I had gained about 30 pounds since the previous year.  I had been diagnosed with polycystic ovarian syndrome.

I went to college, uncomfortable with myself, living in baggy t-shirts and athletic shorts.  I was bullied by my peers. I was hospitalized with pneumonia the second week of school. I came home for thanksgiving 50 pounds heavier.  My parents asked me what I was eating.

I continued to gain weight, I joined a sorority, and had my first kidney stone the following year.  The doctor in the emergency room was very concerned, as I was not the typical patient they see with kidney stones. This was the puzzle piece I was missing.  While I was stuck in the sorority house for a few days, on pain medicine, I started researching.  I read about Cushing's, and knew immediately that this is what I had.

I told everyone.  My friends, parents, relatives, advisor. This was why I got sick all the time. This is why I gained so much weight.  This is why I have kidney stones.  I saw my PCP, who sent me to an endocrinologist.  My tests for Cushing's were negative, and she tried to convince me this is a great thing, because if I dieted and lost weight, I would be better.

I must have seen 10 different specialists, many of them were endocrinologists over the next 2 years. I did midnight salivary tests, 24 hour urine cortisol tests, dexamethasone suppression tests, and all were negative.

Finally, my senior year of college, I was 22 years old, and was having irregular periods. I was seen by the health center at my school, who referred me to the women's center at the local hospital. I had many tests, but they felt more comfortable having me go home to see my primary care team.

The gynecologist I saw had clearly already reviewed my case.  She walked into the exam room and said, "I think there is something wrong with your pituitary gland, and I want you to have an MRI as soon as possible".  I had a brain MRI the next day, and sure enough, it showed a pituitary adenoma.  It took another 2 years to be diagnosed with Cushing's disease.  I had 2 unsuccessful pituitary surgeries, and had a bilateral adrenalectomy in 2010. Before my BLA, I weighed about 300 lbs. (I stopped getting on the scale after 285 - I DID NOT want to see 300!)

Fast forward to today - I still have many health problems. I have lost 140lbs. I am going to be having a PET scan to check for carcinoid tumors, another source of Cushing's.  The fight never ends.

Before Cushing's (don't I still look the same?)

Right before being diagnosed with Cushing's

My pituitary adenoma
After Cushing's
Before, During, and After Cushing's




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…