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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.




Comments

  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.

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

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  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

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

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  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.

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