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

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

10 days at MGH

It's been 10 days, and I am still in the hospital.  I walk two or three (very short) laps around this floor and my heart rate is upwards of 130, my lips, fingers, and toes are increasingly blue-tinged.  My oxygen saturation levels are even lower now, after sitting here for over a week.  So what have we accomplished so far?  Let me tell you. I had the arterial blood gas sampling done on Sunday.  It took a couple more tries but success!  It was of course, painful but nothing that I couldn't handle, especially if it meant an answer and an easy fix.  My arterial blood looked very dark as she was drawing it out, not the bright red oxygenated blood you usually see from arteries.  The doctor commented on this, and said that it was very interesting. Unfortunately, I did not have an abnormal level of methemoglobin.  So that ruled out methemoglobinemia .  The plan was to have an echocardiogram on Monday.  After waiting most of the day, I got pushed to the next day's schedule

MGH Round 2

Hi all, I've been pretty absent from blogging/life activities over the last month or two because my whole life seems to be consumed again by illness and complications from Adrenal Insufficiency.  Right now, I'm typing from my private room at Mass General, where I have been since Saturday.  Before that, I was at a local hospital for a few nights. After being discharged with no answers for my shortness of breath in January, and then refusing further treatment for Lupus related hemolytic anemia, I went back to work and tried to continue on as normal.  This worked for a while, but then enlarged lymph nodes started popping up all over my neck.  I was seen a few times at my PCP's office, and at first thought it might be the start of a virus, but when they didn't disappear after a few weeks, I had an ultrasound to see if we could find a cause.  It turns out, aside from multiple slightly enlarged lymph nodes, I had one whopper lymph node on the left side of my neck, which w