I was looking at my calendar this morning and I realized that it's been 2 years since I had the inkling that something was going wrong with my body. I don't mean just the usual wrong that comes with getting older. But wrong that sits in the back of your mind every day gnawing at you until you agree to validate it. The time between gnaw and validate can be long as it was in my case. But eventually it wears down even the toughest of mind sets.
Two years ago tomorrow was the wedding of our dear friends Jennifer and Carter. I helped organize and plan the festivities and it was a wonderful day. I had worked incredibly hard to recover from my first hip replacement in June 2009. I was strong, lean, fitting into all of my clothes and feeling great. But there were little things going wrong. My hair had started to fall out in clumps. My complexion was a nightmare with constant outbreaks of acne that I hadn't had since high school. I wasn't sleeping well and my blood pressure was higher than it normally was. I didn't think anything of it at the time. Maybe I was heading into menopause. I was getting older - strange things happen. I had my thyroid checked and it was fine. I went to the dermatologist for my hair and complexion and she said I was fine although prescribed something for my acne. Hair falls out sometimes. Stress effects blood pressure and sleep patterns. It's all good. I'm healthy.
By December I started having stomach problems. Nothing was sitting right. I wasn't eating more, but I was gaining weight and it was all in my belly. I was still working out like a maniac but it seemed like I was getting weaker. My face was changing shape. After donating blood at the end of November I learned that my blood pressure was even higher and now my cholesterol was way up. My white blood cell count was way up too. I couldn't sleep through the night if I tried. My hair wasn't growing back. I was exhausted all the time. But still, I could explain it all away. I was starting to think, however, that something might be wrong.
In January 2010 I finally called to make a doctor appointment but felt really stupid about it. What was I going to tell her? I'm gaining weight? I can't sleep? My face looks different? Isn't that the definition of getting older? By the time I actually got in to see the doctor it was March and I was armed with a 10 page treatise including pictures of what I used to look like, a food diary, blood pressure history and an outline with bullet points of symptoms that I was having which were uncharacteristic for me. That appointment started the Cushing's nightmare that I'm still living through today.
My primary care doctor called it right away. I didn't realize at the time what a blessing that was. So many Cushing's patients go for years without being diagnosed correctly. I went home from that appointment after leaving about a gallon of blood to be tested for everything under the sun at the lab, with a jug to pee in (we always remember our first...) and a name - Cushing's Syndrome. As I started to surf the information superhighway to learn more, I was strangely comforted by what I found. Cushing's wasn't common, but it was totally understandable and treatable. Most people have relatively routine pituitary treatment and boom, they're done. I learned the test process that I'd go through to narrow down where the problem was coming from and it wasn't bad at all. I'd be good as new in no time! Phew! Glad I went to the doctor. Shouldn't have waited so long! Such was my attitude in April 2010 when I learned what an Endocrinologist was and why I needed one.
With each test after that my case became more complicated. Results contradicted each other or were inconclusive. The tumor couldn't be found in any of the most common places. I didn't react well to the commonly prescribed medication (liver? Who needs a liver?). I was confounding the doctors and I was getting worse. Little did I know that this was a roller coaster I'd be on indefinitely. I always thought I was one test or one medication away from being done and getting back to normal. I never for a minute thought that Cushing's would be the relative that wouldn't leave. The cloud that would hang over every minute of every day from then until who knows when. The thing that my life would revolve around whether I liked it or not. But it was. And it is.
Pretty soon, thanks to that Endocrinologist, I ended up at NIH and that's when most of you entered into this saga. 2010. Long time ago. I've met some great people, had the best of care and learned that even when life sucks, you have a choice how to behave, how to think, and how to learn. Cushing's is like getting hit upside the head by someone reminding you to appreciate what you have and not take it for granted. I still find myself thinking in terms of "when the Cushing's is over". But in truth it never will be. The symptoms and the condition may someday be over, but the way it's effected me won't. I'll always be looking over my shoulder nervous that what I have will be taken away. Hopefully this will make me live my life even louder and with more joy each day. To realize that each minute is a gift that shouldn't be wasted. And even when life gets overwhelming, I need to remember the simplicity of living. We all do.
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