At the risk of sounding like some poor schmuck who recently ended a particularly heinous relationship... boy have I learned a lot. I think it'd be rather hard not to, after going through something as shit-hellish Cushing's, but, hey, I'm still kinda proud about it.
In particular, I've learned a lot about doctors. They, I now understand, are super important. When you're healthy, it's all well and good to assume that doctors are useless. If I had a nickel for every time I've heard someone brag that they've been gifted with great health ("Oh, I don't get sick" or "I haven't been to the doctor in 3 years!") And, sadly, it's even easier for us sick folk -- particularly those of us in the rare and hard to diagnose camp, who struggle for years to be taken seriously -- to come to the exact same conclusion... that doctors are useless pile of doggy doo. Believe you me, I was so there. But here's the thing, when you're sick -- I mean truly ill -- you not only need doctors, you're completely at their mercy. Sure I struggled for years to find my Doctor Right(s), but if it weren't for them -- particularly one brilliant endocrinologist and kung-fu endoscopic brain surgeon -- I'd still be walking around with a tumor in my head. No amount of healthful living, meditation, yoga, prayer, or positive thinking is going to get you fixed up when you have Cushing's. You just need a doctor, plain and simple.
Unfortunately, it's not actually anywhere near as plain and simple as us sickies would like, because very few doctors will do. Turns out it's my job, as the patient, to fight to be taken seriously by the medical community, and in the case of Cushing's, this often means traveling to see one of the few specialists who understand the disease. I've recently had the privilege of getting to know a whole slew of people with Cushing's and it's story after story just like mine: the years of missed diagnoses, the bouncing from doctor to doctor to doctor, until, years later, you seek out the right one, one who's willing to do the appropriate testing to rule Cushing's in or out. In my case, after 9 years of leaving it up to doctors, it took only 6 months of truly advocating for myself to finally get to the bottom of my mystery illness. I only wish I hadn't waited until I was desperately ill.
See what I'm sayin'? Boy have I learned a lot. I've learned to trust my instinct, deeply and without hesitation; I've learned that it is my job, and mine alone, to assure that I get properly diagnosed in the face of a rare disease. A doctor, even Dr. Right, is simply my partner in helping me figure it out and get better. It actually kinda sucks. I'd love to go on believing blindly that my job as a patient is simply to relate my problems to my doctor, so that she can figure out what's wrong and fix it.
But, in many ways, it's also kinda awesome: because of course I should be in charge of my own health! Duh! When you realize the power you wield over your health -- especially after years of feeling like it's slipping away for reasons beyond your control -- it's... well, kinda amazing. I will never again remain silent when I believe that something is wrong and/or that my doctor is on the wrong path. I now know that I am the only one who cares enough to ensure that I receive the best possible medical care and I will never again settle for anything less.
Those have been my big lessons... but there are more! I've learned that being sick sucks and that it's very hard for people who've never been chronically ill to understand just how much. I've learned that my friends and family are, for the most part, truly amazing and really love me a whole lot... even when they don't understand. I've learned that I'm never alone in what I'm going through.
I have to admit that I look back on the past 10 years with a lot of sadness. I've lost a whole lot as my health slipped away. But, just like someone going through a break-up from a real shit hole of a relationship, I comfort myself with: "Well, I sure did learn a lot!" And it sounds cheesy as all hell... but it's also totally true -- I really did learn a lot! It comforts me and allows me to look ahead to life after Cushing's with no regrets, just thankful for where I am right now.
So, in the spirit of a good ol' fashioned break-up letter: goodbye Cushing's, it's been a wild ride and I really did learn a lot, but you are so dumped.
Thursday, November 12, 2009
Thursday, November 5, 2009
How I spent my fall vacation in beautiful Southern California
In which I have brain surgery and probably cough up a chunk of my own skull
It's been a crazy few days (understatement of the year? maaaaaybe). We landed in LA late Sunday night, checked into our hotel, slept. Monday I met my surgeon and underwent a whole slew of tests to prove that I was fit for surgery - including a physical, appointments with two cardiologists (I actually had to run on a treadmill while they did a EKG and heart ultrasound!) and the all-important pre-op eye exam (ummm... wf?!?). I was cleared for surgery (yay!), which took place early morning Tuesday. Post-surgery, I was in the hospital for 24 hours and have since been recovering happily at my hotel.
My surgeon was fabulous and awesome and seemed very pleased with the surgery and my recovery so far, as you can see from the smile on his face afterwards (will post picture soon). He found a clear tumor on the right side of the gland, which he removed with no complications or surprises. This was a HUGE relief, especially because when we went over my MRI, he showed us what he thought was "something suspicious" on the left side (in addition to the tumor on the right). We agreed that he would remove the right-sided tumor, but also peak around to the left to be sure there was no second tumor. He did and there wasn't. Phew.
I did have some post surgery excitement, when I got super sick with sudden onset nausea, headaches and horrendous muscle aches. It was INSANE. Think the transition phase of labor. Yeah! Some serious craziness! Anyhoo, I felt almost immediately better when the nurse gave me a big dose of dex (a fake form of cortisol, which for reasons I won't go into, is the bane of cushies everywhere), so we think it was a major post-op steroid crash. This is good news! Since my body is accustomed to too much cortisol, it makes sense that I would exhibit withdrawal symptoms when the source is removed. It really really sucked a lot, but gives me hope that my Cushing's has been cured.
Oooh and another moment of excitement occurred early Wednesday morning when I coughed up a small chip of something hard and bone-like, which I'm pretty sure was actually a tiny fragment of my own skull. It was more than a little freaky, but everyone assured me that it was normal and nothing to worry about. David says the surgeon missed a great opportunity for a joke when we showed it to him and he said something like: "Yeah, I know exactly what that is, nothing to worry about" but could have said: "Oh! I was wondering where I left that! Thanks!"
I met with my amazing endocrinologist last night (the Cushing's specialist to whom I initially traveled for testing). Wednesday nights are actually his normal office hours, so he was able to squeeze us in for a quick 15 minute appointment. So glad he was able, cuz it was super helpful. I got my hydrocortisone (longer-term replacement cortisol) dosage sorted out and he agreed that my post-op crash was a very good sign. And I thanked him in person. And got a picture with him. Yay!
So that's the scoop! I'm slowly recovering at my hotel. Tonight I have to do a "sleep study," during which I think they monitor my oxygen level overnight. Nothing like being all hooked up to machines to make for a restful night's sleep, eh? Bleah.
Tomorrow we head back to Oregon to be reunited with the chiddlers. They've been having a grand ol' time with my Dad, who flew out from Edmonton to hang out for the week. Sounds like he's been keeping them busy with all kinds of fun outings. When we spoke on the phone today, Micah told me about a trip to McDonalds where he ate chicken McNuggets and got Astroboy toys. Eli reported a trip to the airport where he got to touch a real plane. They probably won't be glad to see us ;)
David has been fabulous and amazing as per usual and I think we should all throw a party in his honor just as soon as I'm feeling better.
It's been a crazy few days (understatement of the year? maaaaaybe). We landed in LA late Sunday night, checked into our hotel, slept. Monday I met my surgeon and underwent a whole slew of tests to prove that I was fit for surgery - including a physical, appointments with two cardiologists (I actually had to run on a treadmill while they did a EKG and heart ultrasound!) and the all-important pre-op eye exam (ummm... wf?!?). I was cleared for surgery (yay!), which took place early morning Tuesday. Post-surgery, I was in the hospital for 24 hours and have since been recovering happily at my hotel.
My surgeon was fabulous and awesome and seemed very pleased with the surgery and my recovery so far, as you can see from the smile on his face afterwards (will post picture soon). He found a clear tumor on the right side of the gland, which he removed with no complications or surprises. This was a HUGE relief, especially because when we went over my MRI, he showed us what he thought was "something suspicious" on the left side (in addition to the tumor on the right). We agreed that he would remove the right-sided tumor, but also peak around to the left to be sure there was no second tumor. He did and there wasn't. Phew.
I did have some post surgery excitement, when I got super sick with sudden onset nausea, headaches and horrendous muscle aches. It was INSANE. Think the transition phase of labor. Yeah! Some serious craziness! Anyhoo, I felt almost immediately better when the nurse gave me a big dose of dex (a fake form of cortisol, which for reasons I won't go into, is the bane of cushies everywhere), so we think it was a major post-op steroid crash. This is good news! Since my body is accustomed to too much cortisol, it makes sense that I would exhibit withdrawal symptoms when the source is removed. It really really sucked a lot, but gives me hope that my Cushing's has been cured.
Oooh and another moment of excitement occurred early Wednesday morning when I coughed up a small chip of something hard and bone-like, which I'm pretty sure was actually a tiny fragment of my own skull. It was more than a little freaky, but everyone assured me that it was normal and nothing to worry about. David says the surgeon missed a great opportunity for a joke when we showed it to him and he said something like: "Yeah, I know exactly what that is, nothing to worry about" but could have said: "Oh! I was wondering where I left that! Thanks!"
I met with my amazing endocrinologist last night (the Cushing's specialist to whom I initially traveled for testing). Wednesday nights are actually his normal office hours, so he was able to squeeze us in for a quick 15 minute appointment. So glad he was able, cuz it was super helpful. I got my hydrocortisone (longer-term replacement cortisol) dosage sorted out and he agreed that my post-op crash was a very good sign. And I thanked him in person. And got a picture with him. Yay!
So that's the scoop! I'm slowly recovering at my hotel. Tonight I have to do a "sleep study," during which I think they monitor my oxygen level overnight. Nothing like being all hooked up to machines to make for a restful night's sleep, eh? Bleah.
Tomorrow we head back to Oregon to be reunited with the chiddlers. They've been having a grand ol' time with my Dad, who flew out from Edmonton to hang out for the week. Sounds like he's been keeping them busy with all kinds of fun outings. When we spoke on the phone today, Micah told me about a trip to McDonalds where he ate chicken McNuggets and got Astroboy toys. Eli reported a trip to the airport where he got to touch a real plane. They probably won't be glad to see us ;)
David has been fabulous and amazing as per usual and I think we should all throw a party in his honor just as soon as I'm feeling better.
Saturday, October 31, 2009
More than you ever wanted to know about my pituitary gland
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.
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.
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