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.
Sunday, October 23, 2011
Sunday, October 16, 2011
A bit of plagiarism for your consideration
We are all used to my uber-individual musings here and goodness knows that what I end up barfing up on the written page (cyber or otherwise) could never be blamed or attributed to someone else. But I found this recently and since I couldn't have said it better myself, I thought I'd pass it along in it's original form. I hope that you all get as much out of it as I do. May I suggest keeping a copy handy to reread during those moments when you feel that life is living you instead of the reverse.
This is your LIFE.
Do what you love and do it often.
If you don't like something, change it.
If you don't like your job, quit.
If you don't have enough time, stop watching TV.
If you are looking for the love of your life, stop. They will be waiting for you when you start doing things you love.
Stop over analyzing, LIFE is simple.
All emotions are beautiful
When you eat, appreciate every last bite.
Open your mind, arms, and heart to new things and people. We are united in our differences.
Ask the next person you see what their passion is, and share your inspiring dream with them.
Travel often, getting lost will help you find yourself.
Some opportunities only come once, seize them.
LIFE is about the people you meet, and the things you create with them so go out and start creating.
LIFE is short.
Live your dream and share your passion.
I couldn't have said it better myself...
This is your LIFE.
Do what you love and do it often.
If you don't like something, change it.
If you don't like your job, quit.
If you don't have enough time, stop watching TV.
If you are looking for the love of your life, stop. They will be waiting for you when you start doing things you love.
Stop over analyzing, LIFE is simple.
All emotions are beautiful
When you eat, appreciate every last bite.
Open your mind, arms, and heart to new things and people. We are united in our differences.
Ask the next person you see what their passion is, and share your inspiring dream with them.
Travel often, getting lost will help you find yourself.
Some opportunities only come once, seize them.
LIFE is about the people you meet, and the things you create with them so go out and start creating.
LIFE is short.
Live your dream and share your passion.
I couldn't have said it better myself...
Sunday, October 9, 2011
The wheels of justice go 'round and 'round
This week has been a full one. I had some dental work done, got a FABULOUS and much needed massage, got high post-op marks at the hip doctor, worked a few hours with my peeps at the assisted living facility, and, of course, dropped off my jug 'o pee at the lab. But the high point of the week was on Monday with a call to jury duty.
Now some people may revile the prospect of serving on a jury. To participating in the cattle call of citizens at all. I, however, don't mind. Like voting, we can't have our comments on a situation taken seriously without actively participating in the process. Besides, I believe wholeheartedly that our process of justice, while flawed, is the best of all possible options, and it won't work without the participation of citizens. We are the backbone of our justice system and have the responsibility, in my opinion, to hold up our end of it. So while scheduling around the call to duty is stressful and quite frankly a pain in the neck, the service itself is not. So I carefully reviewed the bus schedule, updated my ipod, packed a lunch and off I went on Monday morning bound for the Jackson County courthouse in downtown Kansas City.
I LOVE taking the bus. No parking woes, no traffic worries, no personal carbon footprint, and lots of blog-worthy subject matter to observe and enjoy. I don't know what it is about bus transport that makes it basically the same no matter what city you are in. There's always the crazy homeless-looking man talking to himself or others (whether in his head or actually physically seated around him), business people trying to ignore him, and small groups of regular riders catching up on what has happened in their lives since they saw each other last. Being a veteran of bus riding in San Francisco, I am always pleased to board the KC metro bus and not having the smell of urine and strange foreign food-stuffs greet me as I climb aboard.
The bus dropped me smack in front of the courthouse and I ambled up the steps to the one door that was available to enter. After emptying the electronic devices from my purse and watching it all go through the xray machine (note to the shoe bombers out there - they do not make you take off your footwear at the KC courthouse), I proceed through the metal detector. I, of course, set the thing off, but forget that whether I strip down to my skivvies or not my hips will receive the dreaded beep of doom. I show that I'm not wearing a belt nor any large jewelry, and then remember that, oh yeah, I have two fake hips! So I get the wand treatment and a bit of an attitude from the security woman who seemed to have a bit of seething indifference brewing just below the surface of her minimally pleasant demeanor. Convinced that I am not harboring a concealed weapon of any kind, and no doubt wanting to alleviate the ever growing back up at the xray machine, she lets me go. I pack up my purse and proceed to the jury holding area.
All of us prospective jurors receive a short questionnaire (name, address, occupation, age, etc.), a little pencil and we are sent off to find a seat in the corral full of rows of chairs that are attached to the floor facing a judge's Bench set up straight out of an episode of Perry Mason. The first lesson of the day was that some people cannot get themselves somewhere on time even when that time is court dictated. The head jury wrangler took a seat at the Bench and gave us all a speech about the justice system, how much they appreciate our service, apologizing for the legislature mandated $6 pay per day that we are entitled to, and a basic outline of what we can expect for the day. I was a little surprised that the group as a whole was quite well behaved and attentive. Perhaps I underestimated the cross section of Kansas City that I expected to meet. Perhaps my opinion of people in general as lazy, reality TV watching, ill mannered, self centered, irresponsible lemmings was too harsh. I'm still working on that. One trip through the passenger side of the justice system does not a society redeem. As slightly shown by the line of bodies that waited to explain to the judge why they were not qualified to sit on a jury. The criteria was clearly laid out by said judge without alot of wiggle room...or so I thought. Of course the gentleman dressed in fatigues fit the "no active duty military" criteria, and the gentleman with the surgical mask over is nose and mouth probably fit the "medical condition" out, though I wouldn't contest him on it anyway. The woman wearing what looked like one leg of a pair of pantyhose on her head also got excused by the judge and I don't even want to know what her situation was. But by and large one by one the people from the line returned to a chair with the rest of us after they pleaded their case to the judge. I have to believe he's heard every excuse in the book by now and has a rather tough, though pleasant, stand on such things.
I and 19 of my closest friends proceeded up to the 4th floor to the appropriately designated room and waited in the hall. I'm realizing now that if there are only 20 of us, chances are pretty good that I'll be sitting on this jury. It wasn't until later in the process that our judge informed us that they would only be picking a jury of 6 for this case making my odds a little better. But for the time being I was looking around at the cross section of society that I'm a part of thinking I may be stuck with these people for a while. They looked like a nice enough bunch. One of everything so it seemed. I give the process high marks on their random sampling. And again, as we sat making idle chit-chat, perusing our chosen electronic devices, or thumbing through select reading materials, I wondered whether my opinion of society in general was too harsh. And then we were herded into the courtroom and the intolerant judgemental side of me returned like an old friend...
I could tell instantly as we walked into the room who the defendant and who the prosecution was. Of course the defendant was guilty. He looked like a cocky idiot who didn't know that you don't wear jeans to court when you're being sued. He couldn't string a sentence together without a bucketful of um's and er's and his grammar? Don't get me started. He hadn't actually opened his mouth at all, but my psychic abilities evaluated the situation so he didn't have to. Moving on to the prosecution, she was a piece of work as well. Primly but stylishly dressed, lots of papers, taking her glasses on and off and looking slightly nervous while trying to maintain a confident demeanor. She was obviously representing herself which led me to believe, while keeping a total open and non-judgemental mind, that she was a pain in the ass who the idiot in the jeans shouldn't have messed with.
As it turns out this was a case where the uninsured idiot crashed his car into the pain in the asses property and he wouldn't take responsibility for the expenses she incurred. The 12-year old ambulance chaser representing the idiot, and the pain in the ass asked us questions as a group to which we held up a laminated card with our juror number on it if we agreed. Basically we all answered the same way - yes, we'd been in an car accident. Yes, we could be impartial. No, we didn't know the defendant, the 12 year old ambulance chaser, or the pain in the ass with the glasses. Then we got herded out into the hallway to wait until all parties in the courtroom agreed on the 6 sorry souls who would decide the case.
Long story less long, 10 minutes later I was on the street walking to the bus stop. I don't know why I didn't get picked. Could they read my mind? Did they find something I was thinking somehow distasteful? Or was it some information on my questionnaire? Is there a vast conspiracy against married college educated homemakers with no children at home? I contemplated that on the fresh smelling bus ride home since there was no crazy homeless man to distract me. At least I know that I have done my civic duty and am not eligible to be called for another 3 years. I wonder what stereotypes I can generate between now and then...
Now some people may revile the prospect of serving on a jury. To participating in the cattle call of citizens at all. I, however, don't mind. Like voting, we can't have our comments on a situation taken seriously without actively participating in the process. Besides, I believe wholeheartedly that our process of justice, while flawed, is the best of all possible options, and it won't work without the participation of citizens. We are the backbone of our justice system and have the responsibility, in my opinion, to hold up our end of it. So while scheduling around the call to duty is stressful and quite frankly a pain in the neck, the service itself is not. So I carefully reviewed the bus schedule, updated my ipod, packed a lunch and off I went on Monday morning bound for the Jackson County courthouse in downtown Kansas City.
I LOVE taking the bus. No parking woes, no traffic worries, no personal carbon footprint, and lots of blog-worthy subject matter to observe and enjoy. I don't know what it is about bus transport that makes it basically the same no matter what city you are in. There's always the crazy homeless-looking man talking to himself or others (whether in his head or actually physically seated around him), business people trying to ignore him, and small groups of regular riders catching up on what has happened in their lives since they saw each other last. Being a veteran of bus riding in San Francisco, I am always pleased to board the KC metro bus and not having the smell of urine and strange foreign food-stuffs greet me as I climb aboard.
The bus dropped me smack in front of the courthouse and I ambled up the steps to the one door that was available to enter. After emptying the electronic devices from my purse and watching it all go through the xray machine (note to the shoe bombers out there - they do not make you take off your footwear at the KC courthouse), I proceed through the metal detector. I, of course, set the thing off, but forget that whether I strip down to my skivvies or not my hips will receive the dreaded beep of doom. I show that I'm not wearing a belt nor any large jewelry, and then remember that, oh yeah, I have two fake hips! So I get the wand treatment and a bit of an attitude from the security woman who seemed to have a bit of seething indifference brewing just below the surface of her minimally pleasant demeanor. Convinced that I am not harboring a concealed weapon of any kind, and no doubt wanting to alleviate the ever growing back up at the xray machine, she lets me go. I pack up my purse and proceed to the jury holding area.
All of us prospective jurors receive a short questionnaire (name, address, occupation, age, etc.), a little pencil and we are sent off to find a seat in the corral full of rows of chairs that are attached to the floor facing a judge's Bench set up straight out of an episode of Perry Mason. The first lesson of the day was that some people cannot get themselves somewhere on time even when that time is court dictated. The head jury wrangler took a seat at the Bench and gave us all a speech about the justice system, how much they appreciate our service, apologizing for the legislature mandated $6 pay per day that we are entitled to, and a basic outline of what we can expect for the day. I was a little surprised that the group as a whole was quite well behaved and attentive. Perhaps I underestimated the cross section of Kansas City that I expected to meet. Perhaps my opinion of people in general as lazy, reality TV watching, ill mannered, self centered, irresponsible lemmings was too harsh. I'm still working on that. One trip through the passenger side of the justice system does not a society redeem. As slightly shown by the line of bodies that waited to explain to the judge why they were not qualified to sit on a jury. The criteria was clearly laid out by said judge without alot of wiggle room...or so I thought. Of course the gentleman dressed in fatigues fit the "no active duty military" criteria, and the gentleman with the surgical mask over is nose and mouth probably fit the "medical condition" out, though I wouldn't contest him on it anyway. The woman wearing what looked like one leg of a pair of pantyhose on her head also got excused by the judge and I don't even want to know what her situation was. But by and large one by one the people from the line returned to a chair with the rest of us after they pleaded their case to the judge. I have to believe he's heard every excuse in the book by now and has a rather tough, though pleasant, stand on such things.
I and 19 of my closest friends proceeded up to the 4th floor to the appropriately designated room and waited in the hall. I'm realizing now that if there are only 20 of us, chances are pretty good that I'll be sitting on this jury. It wasn't until later in the process that our judge informed us that they would only be picking a jury of 6 for this case making my odds a little better. But for the time being I was looking around at the cross section of society that I'm a part of thinking I may be stuck with these people for a while. They looked like a nice enough bunch. One of everything so it seemed. I give the process high marks on their random sampling. And again, as we sat making idle chit-chat, perusing our chosen electronic devices, or thumbing through select reading materials, I wondered whether my opinion of society in general was too harsh. And then we were herded into the courtroom and the intolerant judgemental side of me returned like an old friend...
I could tell instantly as we walked into the room who the defendant and who the prosecution was. Of course the defendant was guilty. He looked like a cocky idiot who didn't know that you don't wear jeans to court when you're being sued. He couldn't string a sentence together without a bucketful of um's and er's and his grammar? Don't get me started. He hadn't actually opened his mouth at all, but my psychic abilities evaluated the situation so he didn't have to. Moving on to the prosecution, she was a piece of work as well. Primly but stylishly dressed, lots of papers, taking her glasses on and off and looking slightly nervous while trying to maintain a confident demeanor. She was obviously representing herself which led me to believe, while keeping a total open and non-judgemental mind, that she was a pain in the ass who the idiot in the jeans shouldn't have messed with.
As it turns out this was a case where the uninsured idiot crashed his car into the pain in the asses property and he wouldn't take responsibility for the expenses she incurred. The 12-year old ambulance chaser representing the idiot, and the pain in the ass asked us questions as a group to which we held up a laminated card with our juror number on it if we agreed. Basically we all answered the same way - yes, we'd been in an car accident. Yes, we could be impartial. No, we didn't know the defendant, the 12 year old ambulance chaser, or the pain in the ass with the glasses. Then we got herded out into the hallway to wait until all parties in the courtroom agreed on the 6 sorry souls who would decide the case.
Long story less long, 10 minutes later I was on the street walking to the bus stop. I don't know why I didn't get picked. Could they read my mind? Did they find something I was thinking somehow distasteful? Or was it some information on my questionnaire? Is there a vast conspiracy against married college educated homemakers with no children at home? I contemplated that on the fresh smelling bus ride home since there was no crazy homeless man to distract me. At least I know that I have done my civic duty and am not eligible to be called for another 3 years. I wonder what stereotypes I can generate between now and then...
Sunday, October 2, 2011
rollin' rollin' rollin'...
I've made no bones about the fact that recovering my muscles and shape from the ravages of Cushing's has not been easy. The disease took away my strength and somehow I thought that it would just come back the way it left. I was sorely mistaken. I work and work and work in the gym to gain back in baby steps the strength that seems to have gone in leaps and bounds. The Cushing's didn't directly effect my cardio strength, but not being able to work out due to the condition, compounded by the eventual pain in my hip, left me finding a walk around the block rather taxing. Now I'm struggling to get all that back.
So what is the next logical step in this recovery you ask? Riding a bike for 35 miles with a couple thousand of my closest friends stopping every 5 miles or so to eat barbecue of course! Actually, that's a little inaccurate. Some of those thousands of people rode 15 miles and some rode 65. But we all ate BBQ and we all rode to benefit LiveStrong cancer charity.
Keith rode with me on our mountain bikes with road tires and I had my tiara duct taped to my helmet so that everyone knew that a Princess was amongst them. I didn't realize that Kansas City and the surrounding suburban towns were so hilly! I thought this place was flat as the proverbial pancake but I was wrong. The ride was 35 miles of great quad work and I didn't feel bad at all snarfing down a little taste of BBQ every few miles. By the end I had noodles for legs, and definitely felt like I got a fabulous cardio and strength workout on wheels.
I must admit I did do alot of thinking back a few years when I could ride 50 miles at a shot without feeling worn out. I need to learn to compare my conditioning today with my conditioning of yesterday and NOT my conditioning of two years ago. But it's hard to readjust expectations when you don't want to. I know that it has to be done otherwise how do I feel good about the incremental accomplishments along the way? How do any of us?
I guess the answer to that million dollar question is you just do. You choose to readjust your thinking otherwise you are choosing not to be happy with yourself. Sounds simple enough. We'll see if that works. If I can stick to that glass half full way of thinking rather sinking into the glass half empty. I can do anything if I put my mind to it. Any of us can.
So what is the next logical step in this recovery you ask? Riding a bike for 35 miles with a couple thousand of my closest friends stopping every 5 miles or so to eat barbecue of course! Actually, that's a little inaccurate. Some of those thousands of people rode 15 miles and some rode 65. But we all ate BBQ and we all rode to benefit LiveStrong cancer charity.
Keith rode with me on our mountain bikes with road tires and I had my tiara duct taped to my helmet so that everyone knew that a Princess was amongst them. I didn't realize that Kansas City and the surrounding suburban towns were so hilly! I thought this place was flat as the proverbial pancake but I was wrong. The ride was 35 miles of great quad work and I didn't feel bad at all snarfing down a little taste of BBQ every few miles. By the end I had noodles for legs, and definitely felt like I got a fabulous cardio and strength workout on wheels.
I must admit I did do alot of thinking back a few years when I could ride 50 miles at a shot without feeling worn out. I need to learn to compare my conditioning today with my conditioning of yesterday and NOT my conditioning of two years ago. But it's hard to readjust expectations when you don't want to. I know that it has to be done otherwise how do I feel good about the incremental accomplishments along the way? How do any of us?
I guess the answer to that million dollar question is you just do. You choose to readjust your thinking otherwise you are choosing not to be happy with yourself. Sounds simple enough. We'll see if that works. If I can stick to that glass half full way of thinking rather sinking into the glass half empty. I can do anything if I put my mind to it. Any of us can.
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