Apologies in advance to the squeamish among you, but my pituitary gland is hijacking this blog... at least temporarily. I'll try to continue with the occasional chiddler update, but, for now, you're stuck with a crash course in endocrinology.
Most of you know that I've been sick, but some of you, particularly those who are far away, probably don't know exactly what's going on. So here's the scoop... I was recently diagnosed with Cushing's disease, a rare endocrine disorder caused by prolonged overexposure to the hormone cortisol. Cortisol -- a life-sustaining hormone produced in the adrenal glands -- does all kinds of super important things. It regulates blood pressure and blood sugars, supports the immune system, regulates the metabolism and helps the body in times of stress. Sounds great, eh? It is. Unless, like me, you have too much of it. Then it is very very horrendous and sucky and bad, bad, bad and a big pile of shit.
The whole "too much cortisol" thing is called Cushing's syndrome. Cushing's disease is a type of Cushing's syndrome that occurs as a result of a small, non-cancerous tumor on the pituitary gland. The tumor secretes excess amounts of the hormone ACTH, which in turns tells the adrenals to make too much cortisol. If you'd like to read more about it, I recommend the Wikipedia page here.
For me, the whole terrible mess started about 9 years ago, with a sudden onset of symptoms while I was living in San Francisco. I got very sick, very suddenly. My list of symptoms was extensive and included: crazy sleep problems, extreme dry mouth and chronic thirst, heart problems (though they were relatively minor at the time), distressing skin problems, rapid, uncontrollable weight gain (despite healthy eating and exercising constantly), GI problems, sore muscles, exhaustion. This really is just to name a few, but I'll spare you to the details. The hyper-curious among you need just google "cushing's symptoms." Lucky me, I got them all.
As you might imagine, I was freaked out and felt as though something had gone terribly wrong with my body. Those of you who knew me well then remember my frequent trips to the doctor. Unfortunately, they came up with ziltch. Nada. Nothing. And at the time, nobody even mentioned Cushing's. When we moved from SF to OR, I gave up looking for years and went on with my life.
My symptoms continued, and I continued to feel unwell, but not horribly so. Overall, I was able to lead a super happy life despite my underlying health problems and, though I did continue to feel like something was wrong, I'd convinced myself that it wasn't anything serious.
Boy was I wrong. It hit me like a slap in the face about 10 months ago, when my health took a very sudden turn for the worse. All my symptoms worsened and I developed new ones. My hair started falling out in clumps. My muscles became so sore and weak that -- despite the fact that I was jogging for an hour every day, had a regular and vigorous yoga practice and spent almost all my time running around with the kids outdoors -- I could barely walk by the end of the day. I developed some serious problems with my heart (doc: "you're not leaving this office until you start this blood pressure medication") and all kinds of other thing started going haywire.
I knew something was seriously wrong. Fortunately, I lucked out with a very smart doctor who strongly suspected I had the little known, very rare disorder, Cushing's disease. Unfortunately, I wasn't able to see her again and my next few doctors were clueless. I decided to start researching online and from the moment I first read about Cushing's, I knew, without a doubt, that I had it. David was more than a little sketched out about the idea of self-diagnosing on the internet, until I forwarded him all the info I could find on Cushing's. He was also completely convinced that I had it from the moment he first read about it. For him, it was partially that I had every symptom and that he already knew I had high cortisol (the one consistent thing that had been turning up in my lab results). But mostly, he diagnosed me based on one symptom, which he had never even thought of as such. You see, one of the telltale signs of Cushing's is bright purple striae (which is a fancy and somewhat more flattering word for stretch marks) that appear on your abdomen, boobs, back and other parts of your body. I started getting them everywhere very suddenly when I first got sick 10 years ago, but we never thought of them as a symptom. We just thought they were weird.
Anyhoo, after my experience of being brushed off by doctors for so many years, despite the fact that my symptoms and lab results pointed to Cushing's, we decided to skip the middleman and travel to see a Cushing's specialist.
Well, that was about the best decision I've ever made. The testing process was INSANE and involved peeing in jugs, fedexing spit samples, several blood tests and an MRI, but the long and the short of it is that my pituitary MRI showed a tumor and my biochemical tests proved that I had high cortisol as a result of the tumor. All in all, once Cushing's was suspected, my diagnosis came relatively quickly, something for which I am very very grateful.
Phew.
So here I am now, thrilled to be on the other side of diagnosis (fellow cushies, who've been through that particular stage of hell, know exactly what I'm talking about) and very ready to move on to surgery. Which, btw, is Tuesday. Yep, as in 2 days from now. Brain surgery! In 2 days! I know it sounds weird, but I'm stoked. When I express my anxiety about my health predicament, I think people assume that I'm nervous about the whole brain surgery thing. Sorry folks, hate to disappoint, but I'm not. "Not even a little bit?" is what people inevitably want to know. Nope. Not even. Well, unless sheer and utter joy counts as nervousness... seriously, I really am stoked. My surgeon is top notch and I have absolutely no doubt that I'll get through surgery just fine. I'm also certain that this is the right step for me take towards ridding myself of his horrible disease. I am nervous about few other things. Mostly about whether or not the surgery will work to cure my Cushing's. First time pituitary surgery has about a 2/3 success rate, so my odds are good but not fantastic. I'm optimistic though, and mostly just thrilled to be moving in the right direction.
If you'd like to learn more about Cushing's, please watch this video. It focuses mainly on the weight gain aspect of the disease, but also has great overall info.
Also, friends and family, if you're interested in knowing what to expect from me in terms of recovery, please read this letter, written brilliantly by a fellow cushie shortly after her surgery.
