Skip to main content

4 Years of Cushie Life

So, I sort of missed the actual day, November 9th, but it's been 4 years since my diagnosis, and almost 4 years since my first surgery.  After years of doctor's appointments, testing, a lot of weight gained, many tears, and breakdowns, I finally was diagnosed with Cushing's Disease.  I remember almost canceling the appointment before, because I had chickened out during my MRI, but when I called, the secretary said no way, keep the appointment.  I had seen the MD, not the fellow the appointment before, and had done more testing than ever, and was on a strict diet.  My mom was with me, and I finally heard the words "You have Cushing's Disease".  You can read about that moment here.

It's a hard thing to explain to most people, most people are devastated when they are diagnosed with such a serious, life threatening disease.  For most people with Cushing's, the diagnosis is a long time coming.  Most of us have seen many doctors, tested for years, and already know that this is the beginning of the end.  It's a celebratory moment.  I cried many tears, and called probably everyone I know.  It was such a relief, and I felt validated for the first time in years.  This is why I had so much trouble completing my undergraduate education.  This is why I cry when someone looks at me the wrong way, this is why I am over 200lbs.

My mom called a lawyer on the way home, hoping to get some answers from all the doctors, including endocrinologists, who dismissed me. We never pursued it any further.

Within a month, I had a diagnostic IPSS, and my first pituitary surgery.  I was in a rush to have that done because one of my best friends was getting married in January and I was determined to be there.  Little did I know, I did not need to prepare for extra time, I was on vacation the week after my surgery, because I never had the withdrawal symptoms after surgery, I wasn't cured.

In the last 4 years, I have had 3 surgeries, countless kidney stones, more complicated diseases, more tumors, and a lot more tears.  I thought that diagnosis was the beginning of the end, but it was just the beginning, the tip of the iceberg.  I had hopes of finally being a NORMAL 20-something, but I will never be NORMAL.  I will always have to be more hesitant than most people, I have less friends than  most people, because I lost most of my friends to this disease.  Now everyone I know knows to never underestimate how sick I can get if I am not careful about eating on time, taking medications when I need to, and not doing anything that will make these things more likely to happen.  I have to live in a bubble, of sorts.

Of course, there are some positives as well.  I have taught so many people about this disease, and how horrible and life altering it is.  All of my friends and coworkers know how to inject my steroids. I have scared everyone I know because of TIAs, hemiplegic migraines, and adrenal insufficiency.  I have spoken to future health care professionals about Cushing's, and hopefully they will be better clinicians because of it.  I have taught endocrinologist about this, I have made every one that sees me in a hospital learn about my disease.  I do not have the life that I had hoped to have, but I have a life that will help teach everyone I talk to, or anyone who reads my blog.


  1. I'm sure it was a bittersweet day when you found out you'd been diagnosed. A relief to know what had been afflicting you- something to fight. I've learned a lot through your blog- awareness is so important.

    1. Exactly Kate - anger, relief, and sadness, but mostly relief.

  2. I know the feeling. I was diagnosed on my 30th birthday and went to the National Institute of Health. I lived there for 2 months, free of charge. Now 32, I am not on any medication, lost 40 pounds, and fully healthy. The only way you could even tell I had Cushing's Disease, is the stretch marks and honestly they are fading each day. I think I'm obligated to educate too. Take Care, Brian

    1. I'm glad that you are doing well Brian! Thanks for reading.

  3. I just started reading your blog and I'm going through a similar situation. My diagnosis is being delayed by my endo since he isn't very knowledgeable when it comes to Cushing's disease. The results are all I'm front of him yet he refuses to give me surgery until he is "positive". I been to at least 8 different endos so far.


Post a Comment

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…

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…