We're not in Paris anymore...

Last week Paris, this week Bethesda.  My what a difference a week makes...

I'm here for a 6 month recheck for the darn tumor that is causing me all this trouble.  So I have two weeks full of being injected and scanned from stem to stern on the hunt for the little bugger.  Just for the fun of it I had to pee in a jug for two days.  Good times.  And of course there are the 6am blood draws by my favorite phlebotomist Raj.  I am scheduled to leave here on the 23rd just in time to be home for Christmas.

Being an inpatient at the NIH gives me a renewed perspective on my life and my illness.  I've been kind of wrapped up in my own life lately as it revolves seemingly never endingly around Cushings.  But when I come here and see the really sick people, I'm reminded that I have it easy.  As I've said before, my tumor isn't going to kill me.  It may make my life and my health a pain in the ass to manage, but it won't kill me.  Not everyone has the luxury of being able to say that.  I don't even look sick anymore.  So when I'm waiting in the Nuclear Medicine department to be injected with something that comes in a lead box and makes my insides glow, I look like the thing that is not like the others.  The thing that doesn't belong.  What a great feeling that is.  While I am not cured, my symptoms are being managed.  Not in a way that will work in the long term, but for now it's all good.  My hair is growing back and my skin is back to normal.  My weight and shape are pretty much pre-Cushings. 

I have nothing to complain about.

 

Yesterday Paris, today the jug's in the fridge....

Talk about being jolted back to reality!

Keith and I flew back from Paris last Monday 12/5 and boy are our arms tired!...I tell you, that joke never gets old! And on Tuesday I was peeing in my jug.  Good times.  But we wanted to get one more 24 hour urine test and a blood draw done before I go  back to NIH on Sunday.  Such is the life of a Cushie world traveller!  But less about pee and more about Paris...

Keith had a business trip to Paris and I tagged along because...well...I could.  I hesitated a bit in the beginning committing to go.  Between my plane fare and the extra personal nights at the hotel, it wasn't going to be a cheap trip.  But luckily I have enough clear headed people around me reminding me that when opportunity presents itself you have to grab it because you never know when it's going to come around again.  Sounded like my own preaching and I had to take my own advice.  So I dug out my passport, bought a ticket and off we went.

We were there for a week, and Keith had to work for the first 3 days.   So I had a couple of days to myself to do what he didn't want to do.  I hit the Champs Elysees, Arc d' Triomphe, and did some pretty heavy duty window shopping.  One day I popped over to London via the Chunnel Train and visited with my original NIH doctor who finished her fellowship and returned to her home country. Together we went to Montemarte, Notre Dame and the Louvre.  Much fun was had.  We didn't take many pictures because everything was so photo worthy it was overwhelming. 

After a wonderful getaway it is always nice to return home....Where I got to stay for exactly 6 days before leaving for Bethesda and a two week stay at the NIH.  Just call me a world traveler...

"Thank you for being nice."

I've said it before - I love a good holiday built around a meal.  And let's face it, Thanksgiving exists for selling cans of pumpkin, kicking off the Christmas shopping season, and football (go Niners!).  We are lucky that the true meaning of the holiday is built into its name otherwise we would have forgotten the roots of Thanksgiving long ago.

I try to be thankful every day for what I have because I the last couple of years have shown me that it can be taken away in the blink of an eye.  But at times I also get wrapped up in what I have lost, what I have to live with, and the things I want and do not have.  I'm human after all, and I'm sure that you, my dear readers, have no doubt exhibited those same all too human qualities as well.  My words of wisdom on that is as follows:  STOP IT!!

I was out today, on this day before Thanksgiving, picking up our lovely pre-cooked Thanksgiving dinner for two at Whole Foods.  (No, I am not cooking tomorrow, and no, I am not my mother.)  There was traffic everywhere and drivers were propelling their vehicles at breakneck speeds to get all of their last minute errands done.  I don't think a pound of potatoes and the perfect pecan pie is worth getting into a wreck over, but whatever.  I slowly and safely navigated my way to the store with the sole goal of getting in and out with my dinner in one piece.  The parking lot was a zoo, and inside the store was a madhouse with the vehicle drivers now careening around the store with carts while still talking on their cell phones.  A nice, but slightly haggard, man in the deli told me where the table was to pick up my dinner and off I toddled carefully avoiding the mass of food buying humanity in my way. 

At the time I arrived at the pick-up table it was un-manned.  I kind of wondered if anyone was working the table, but there was a laptop there and it was obvious that someone had been there recently.  So I hunkered down for the long haul.  Several people queued up behind me anxiously looking around and making comments to no one in particular about how they were in a hurry and posing the question "doesn't anyone work here?".  Soon a lovely woman pushing a cart containing several orders pulled up to the table and off loaded, in a most pleasant manner, her wares to several impatient members of the chaos occurring around the table.  When she was done with dispersing her load, she came up to the table, woke up the computer and looked up at me.  Before she had a chance to say anything, I said with a smile "the last name is Davis, the first name is Carol", and I waited for her to work her magic and find my order.  After she typed in my name, she looked up at me and said with a tone of earnestness, "thank you for being nice." 

She got my dinner and sent me on my way but I couldn't get her words out of my head.  Being nice is the least any of us can do to make the world a better place.  It costs no money and takes relatively little skill.  And yet there are instances where niceness is such a rare commodity that one is thanked for exhibiting it?  And why?  In this case because people want their food?  That is ridiculous.

On this, the eve of the Thanksgiving holiday, take a moment to review just how lucky each and every one of you are.  Forget about what you don't have and embrace what you do have.  Be happy with your life and let that happiness spill over and effect others.  Make the world a better place by being better.  And above everything else, be nice.  It matters.

Geritol anyone??

I just had a birthday the other day.  The big 47.  Not that 47 is bigger than any other birthday I suppose, but I subscribe to the theory that every birthday is a big birthday.  And not just because it's better than the alternative of not having a birthday.  But birthdays are a day to celebrate being you.  Being here.  Being whatever it is you want to be.  And wearing a tiara.  Always a tiara...

As I was celebrating all things Carol, I took notice of some things around me that anyone with significantly fewer years on this earth wouldn't appreciate. And it's starting to dawn on me how my parents felt when growing up I said things like "what do you mean phones used to have cranks??".  I would have hit me, but Stella and Bob had much more patience than that...and Scotch Old-Fashions...

I remember in high school and college going up and down the bleachers at basketball games or assemblies and fearing to my very quick stumbling and falling down to the floor most likely arriving in a heap of broken bones and embarrassment.  I watched every step.  Now kids go up and down bleacher steps with earbuds in rocking out to their favorite indy band while texting on their phone AND holding a conversation with the person next to them.  I can't even do that on a flat surface.  Oh, who am I kidding.  I can't do all three of those things at once under any circumstances.

It used to be the only people talking with acronyms and abbreviations in conversation were twins using their weird twin language and run of the mill schizophrenics.  Now if you don't know what ROTFL and LOL are, forget it. 

Taking movies at Christmas these days involves nothing more than pulling your phone out of your jammies and pushing a button.  Embarrassing family videos are as easy as documenting anti-government uprisings.  But back in my day, Christmas morning wasn't Christmas morning without a light bar emitting 2000 degrees of searing bulb induced heat, a wobbly hand held movie camera, lots of squinting and at least one person on the verge of tears because the movies are taking too long and there are presents to open!!  Not that I ever felt that way or anything...

Voicemail wasn't invented.  You got an illegible hand written note or, if you were really into technology, you had a answering machine with two cassette tapes just waiting to get wound around the inner workings of the gizmo.  And speaking of cassette tapes, when was the last time you saw one totally unwound on the side of the road?  Good times...

Printing a document meant you didn't use cursive.

Nothing came in a safety tamper resistant package.  If someone wanted to tamper with your Tylenol or your toothpaste, they did.  If you didn't want your kids to take your medication, you hid it.

I could go on and on.  But instead I think I'll have an old-fashion instead.

Happy Anniversary To Me??

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.

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...

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...

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. 

If it walks like a duck...

I decided to mix it up a little bit last week and add a couple of new things into my workout routine.  A couple of oldies but goodies that I haven't been back to for a while...

First on the list was revisiting Jenn's yoga class.  Let's be clear - I am not a huge fan of yoga.  Not because it isn't a really great workout, or because it isn't an incredibly valuable practice for any one's body and mind.  I'm not a huge fan because it's HARD and I SUCK at it.  Also, it used to be incredibly painful with hips that were rubbing bone on bone.  But without that last excuse to hide behind, there is no reason not to get back at it for a pride destroying workout.

With my personal expectation bar set as low as it could possibly go, I unrolled my mat as close to the back of the room as I could get without actually becoming a part of the drywall.  I thought I was bad before, but I've reached epic levels of badness.  The good news is that if I keep at it, the muscles that won't lift me to or hold me in the positions will come back and be fabulous.  The bad news is that I have to keep at it until then.  But as long as I don't fall on anyone else in the class, or sweat every last drop of liquid out of my body in a huge puddle in Jenn's basement, I should be OK.  That doesn't mean it's going to be a love fest - my relationship with yoga is troubled at best.  Even during the classes last week with my expectations set as low as I thought I could, I had moments when I was on the verge of tears.  How can I come back from being this far down?  And why should I?  It would be so much easier to just sit on the couch.  Would anyone blame me?  But then I'd snap out of it and remind myself that I want to get back to normal.  I want to be a stud.  I want to accomplish not settle.  It's going to be a roller coaster, but I'll stick with it.  There will be little victories along the way and those are what's going to get me through.  I don't expect the zen of it all to kick in for quite a while, but I'll be waiting...

As if my pride didn't take enough of a beating trying to wrap my foot around my head in yoga class, I decided to do the one thing that took even more courage - do a swim workout...in a swimsuit...in public!  We all know that swimming is one of the best workouts around.  No impact, great cardio, great muscle workout, but there are a million reasons I can find not to do it.  No more.  I need to get back in the pool and that's just that.  So I scrunched up my courage, put my body issues in the locker with my stuff, and went out to the pool at the gym with my goggles in hand.  I tried not to feel like a sausage stuffed into a casing that was just a tad too small, or like a 100 year old woman when I looked at the college girls manning the lifeguard towers.  If you're gonna do it, own it!  And off I went.

I ended up swimming for an hour alternating regular freestyle, kicking only, paddling only, and more freestyle.  It was a great workout and I did it.  I also planned on following up with lunge walking in the shallow end, but that space was being used by several young Asian gentlemen in speedo's and swim caps splashing back and forth in what kind of could pass as swimming.  Needless to say, I didn't want to disturb that. So I left the pool exhausted and a little noodle-y, but happy.  Happy that I made the effort to do it.  Happy that I didn't find an excuse not to go.  Happy that I didn't drown. 

Take it from me as you decide whether to go for that walk, bike ride, or maybe go to the gym.  I know you can find a million reasons not to.  God knows no one knows that better than me.  I can even give you a few reasons you haven't even thought of yet.  But do it anyway.  You'll be happy you did afterwards knowing you didn't give up on yourself. 

It's that time of year again...

Fall.  Well, maybe not fall, but the end of summer.  It's here again.  Kids are going back to school, parents are breathing a sigh of relief, vacations are being wrapped up and Halloween, Thanksgiving, and, yes, Christmas decorations are working their way onto the shelves of your nearest big box store.  I love this time of year.  It's always full of possibilities.  Full of excitement for what's to come.  And back to school clothes. 

I've changed gyms and now workout at nearby UMKC.  The students have flooded back with their 100 pound backpacks and their wide eyed optimism.  It's a nice environment to be in every afternoon as I make my way to the fitness center.  When you enter the campus you leave the politics, economics and personal medical issues of the real world behind.

I'm slowly building up my strength and endurance (yet again) just by keeping at it every day.  If I don't get to the gym I'll walk around the park or go for a long bike ride.  Things I couldn't do before having my hip replaced.  As I get stronger I feel more rejuvenated.  Expending energy is giving me more energy to keep going.  How's that for a self-fulfilling prophecy?

Unfortunately my Cushing's is still not cooperating.  One week my cortisol level is up, the next it's down.  The tumor is in control and my endocrine system is just along for the ride.  The good news is that my cortisol isn't getting anywhere near as high as it was when I first started my Cushing's saga.  Metty is seeing to that.  But the fact that the level can still get high shows that Metty is losing the fight when the tumor really wants to produce.  We have some options to add in additional toxic drugs to try to control the level of cortisol, but until the tumor decides to stabilize it's output we are working against a moving target.  Unfortunately the drugs can only work on the cortisol, not the tumor. 

So I'm just taking things one day at a time.  Some days I feel great, some days not so much.  But there are always those out there that have it worse than me even on my ickiest day.  I shall continue to plod along retaining all of my fabulocity and regal Princess qualities until further notice!  That much I can guarantee!

Off to the fair we go.

In an effort to have more fun these days, Keith and I decided to venture down to Sedalia Missouri on Tuesday and visit the MO state fair.  We are not necessarily "fair" people, we have not made a pilgrimage to state fairs all across America in hopes of hitting 50 in 50 by the time they pry the car keys from our cold dead hands.  But a fair visit every now and again is good clean (well, not in the livestock area...you gotta watch where you step) fun so we decided to take the short hour and a half drive to Sedalia.

I was hoping for a nice assortment of fried food on a stick.  Isn't that really the best perk of a day at the fair?  They can pretty much batter and fry anything these days and goodness knows Americans will eat it.  I have no problem with throwing concern for my arteries out the window for the day to imbibe in a few heart clogging snacks, but I was sorely disappointed in the available assortment.  Aside from your basic corn dogs, the food on a stick options were non-existent.  My desire for a fried Twinkie, or maybe a fried Oreo would have to wait for our next fair adventure.  We did, however, have lunch at the "Pork, the Other White Meat" building and were quite satisfied with our piggy filled meals.  I had a pork burger with bacon, and Keith had fall-off-the-bone tender BBQ ribs worthy of an oinky YUM-O!

After our pork-filled dining experience, we moved on to the livestock barns. We hit the goats,

piggys,

sheepys (they were in cognito!)

cows,

more piggies (ha, ha),

and bunnies (this one's for you Wendy!).

We walked and walked and walked and walked.  Something I could not do only a few short months ago.  But my new hip held up like a trooper!  And after visiting with the animals and looking at all the fair winners in categories from home grown bell peppers to quilts to cakes to arts and crafts to home spun yarn and painted porcelain, we took a break in the dairy building for some ice cream.  And there we saw it.  The maraschino cherry on the sundae of the Missouri State Fair - the ginormous butter sculpture of a cow...thinking...





This artistic piece of cholesterol magic was behind glass in a temperature controlled room for all to see.  We in Missouri are not to be outdone by the Iowa state fair (which garnered much media attention for it's fried food on a stick and out of place GOP candidates on the stump) which has quite a legacy of ginormous butter carvings created for their fair. 

Not being able to top the butter sculpture, we knew instinctively it was time to go.  We departed the fair tired but satisfied that we partook in all that the MO fair had to offer and yet with our arteries and cholesterol levels in tact.  A good day was had by all.  And pork...

Lest we worry...

...based on my last post, that I am hopelessly entrenched in negativity and dismay over my current medical situation, fear NOT!  Any good Princess worth her weight in shiny sparkly things knows that while sometimes life contains more than one's regal share of poopy, it is never 100% crap based.  Yes I am staring in the face some pretty heavy things right now and desperately trying to reconcile everything in my overachieving, control oriented mind.  But that doesn't mean that I don't also recognize that I am still so lucky and happy in my life.  Circumstances may have stacked up in a way I don't want, wouldn't choose and certainly wouldn't wish on anyone else, but that doesn't make my life as a whole any worse for wear.  It's not difficult to take half a look around and see so many people who have it worse than me.  Way worse than me.  So "woe is me" just isn't part of my vocabulary.  I just have things to work through, that's all.  And in the meantime, I appreciate my favorite things, goofy and not-so-much, that make me smile every day.  Let me recap some of them here...

•  My husband, pups, family and friends.  More support and love one person couldn't expect or want.
• Pink - Just about anything in pink makes me happy.  Add some sparkles and I'm grinning ear to ear!
• Roasted vegetables - It's weird, I know.  But mom taught me well.  This is my comfort food and daily lunch.  Yum-o!
• HGTV - How else do you think I get all the home improvement ideas that keep me busy?
• Major League Baseball - On TV or in person the boys of summer entertain me to no end.  And if the Giants win without giving me a heart attack, so much the better.
• Good literature - Words are magic.  They can transport you anywhere and teach you everything.
• Possibility - The fact that the possibilities in life are bound only by the size of your wants and dreams.  Nothing is impossible.  Everything is attainable if you work for it.  Except maybe me making it on the pro beach volleyball scene...but I'm dealing with that...
• Show tunes in the car - No reason we all can't channel our inner Ethel Merman while driving.
• Nachos - No explanation necessary.
• My Gizmo socks - How can you not be happy when you wear these??

So there you have it.  Enjoy the little things when the big things are poopy.  That's what I have to say about that...

Anybody home???

You may have noticed that I haven't been my usual prolific self in the past month or so with regards to postings here.  I'm sure you have missed my musings on life in general that were usually scattered amidst the medical mystery details that have become the fabric of my life.  But lately I have lost my edge.  My creativity has waned.  My humor relatively non-humorous.  As I see this happening, I ask myself "why?".  I don't remember finding myself in this frame of mind during the last year and a half or so.  What's going on?  I'm starting to realize that the key is the time frame.  A year and a half is a long time.  A really long time.  And I think it's starting to get to me.

I've heard people say that the most difficult thing about getting older is letting go of the expectation of what you thought your life was going to be and being satisfied with and finding joy in what your life actually is.  This can be easy (at 46 I'll probably never play professional beach volleyball), or difficult (I thought I'd always be relatively low maintenance...in the medical sense anyway...).  It never occurred to me that my life would revolve around blood tests, alarms going off reminding me to take pills, peeing in a jug, and hoping that federal funding to the NIH doesn't get cut.  In the beginning of this Cushing's saga, I could convince myself that this was just a blip on the personal health meter.  That it wasn't a permanent thing and that I was just paying my dues for all the years that I went medical malady free.  It is becoming more difficult to maintain that optimism.  That belief that this will all be over and my life will return to normal.  That normal that I knew.  That blissfully confident way that my body did what I wanted it to do not what it wanted to do.  I'm starting to mourn for the fact that that ship has sailed.

As near as we can figure, there are going to be two ways out of my Cushing's situation.  Best case is that my gaggle at the NIH finds the tumor that has taken over my endocrine system and nukes the bastard.  I'm due to be re-scanned stem to stern in November, and every finger and toe is crossed that this time is the pay dirt hitting scan-o-rama.  But what if it doesn't happen?  What if the tumor eludes us yet again?  Yes, we could continue on the way we are, life revolving around medications and doctors, for another 6 months until I can be scanned again hoping that that time will be the magic discovery, but do we want to?  That question leads to the only other way out of this mess that is blowing to crap my expectation of the rest of my life.  

If I have my adrenal glands removed, my Cushing's problem would be solved.  It would be solved tomorrow if that's what I wanted to do.  Without adrenals, no cortisol is produced (among other things) and no matter what the tumor in my body is doing, it won't make a difference.  There won't be anything there to listen and do it's bidding.  But, as with everything, there is a catch.  I would have to take medication to replace everything that is no longer produced by the absent adrenals.  That makes me an instant chronic, pre-existing condition and someone who is no longer "healthy".  My life isn't supposed to turn out like that.  Like any of this. 

So there's the choice.  Do I continue on trying to live with Cushing's hoping that eventually my tumor is found meanwhile enduring toxic drugs, radioactive scans, bothersome chemical swings in my system, alarms, doctor visits and a life that revolves around Cushing's rather than the joy of living?  Or do I cut my losses and admit defeat.  I can't win this battle the way I want so I'm going to take charge and end it the way I can.  On my terms.  And how do I not think of that as a defeat.  As giving in.  As losing a fight I wasn't strong enough to continue to fight.  There my friends lies the core of why my prose has dried up and where my mind has gone.

I'm sure my humor and observation skills of the world around me will return.  Soon.  They never stay away for long.  Life is just too ironic for me to let pass by without comment.  But let it be known that I am trying  to reconcile this batch of poopy and re-adjust my views on my own life and future.  We all do it.  I'm just being forced to do it a little sooner and differently than I expected. 

What a difference a few chemicals make

It's been a rough couple of weeks here at Cushing's Central.  My system has completely gone independent and taken my cortisol with it.  Whence last we talked, I was awaiting the results from my blood draw taken on Friday 7/22 to see if my cortisol was still very low (technically making me adrenal insufficient rather than having Cushing's) or if the low cortisol results from the 7/15 blood draw were a trend.  Well, true to the way things seem to happen to me, my cortisol level was "undetectable".  Huh?  My cortisol level is bouncing around more than a ping pong ball at the Beijing Olympics!  What the heck is going on?  And the answer to that million dollar question is...wait for it...we don't know.  Kind of takes the air out of the room, doesn't it.

The awesome news is that I've started taking hydrocortisone to add in the cortisol that my body doesn't seem to be in the mood to produce by itself.  I started that on Wednesday 7/27 and by Thursday I felt 100% better.  With really low, or no, cortisol, you are exhausted all the time, you don't want to eat, you feel yucky, and mentally you can't bring yourself to want to do anything. Not a happy place for the Princess.  And I was going on 2 weeks of this.  So a little relief, even if it comes in pill form, is much appreciated.  I am happy to report that I'm pretty much back to my energetic productive self and accomplishing all sorts of home improvement projects!

The bad news is that weekly blood tests and peeing in a jug are in my future for EVER!  If we don't know from week to week what my cortisol level will be, we can't medicate it consistently.  So we have to check it every week and decide whether I need cortisol added back in or not.  GAH!  I am still taking Metty, so when my body decides to produce cortisol, it will be controlled and I won't go back into full blown Cushing's. 

I'm not due to go back to the NIH until November for more scans.  This will be 6 months from my last scans and that's the schedule we've been on.  There really isn't anything they can do for me at this point except for what they are doing.  It's up to my tumor to show itself so that we can remove it and get my system back on track.  Until then, look for a pee jug in my fridge!

Time marches on

I just realized this morning that it's coming up on a year that I have been writing this blog.  I never expected my Cushing's saga to go on this long and certainly never expected to still be writing about it.  And yet the winding road of my particular medical malady continues to stretch out in front of me with no end in sight.  It's frustrating, confusing, ridiculous and ultimately boring as hell.  I get so tired of being the sick one.  Especially since I was the healthiest person I knew up to a couple of years ago.  I look forward to the day when I can shut this blog down after proclaiming the end in whatever form and function, of my Cushing's.  It looks like I'll be looking forward to that for a while longer.

The news this week came in the form of the results of my blood and 24 hour urine (pee in a jug) tests last Friday.  It seems that my cortisol level went from very high (Cushing's) to very low (adrenal insufficiency) in the span of a week.  You might now be saying to yourself "wow, that Metty really did it's job", but even Metty isn't that good.  We had increased the dose based on a slight decrease in my cortisol level the week before last, but not nearly enough to send my cortisol level through the basement floor.  So what happened?  Here's where the story just keeps getting better.  We think my tumor has just decided to go rogue.

When I went off Muffy, it was because my cortisol level had dropped very low sending me into adrenal insufficiency.  At the time back in May, we chalked it up to a reaction to Muffy.  My cortisol level bounced around for a while and eventually roared back to it's off the charts level.  Now the same thing is happening again.  Without Muffy to blame, and Metty not being in place long enough to have this effect, we are falling back on an explanation that was bantered around back in May - maybe the tumor that we can't find that is causing all this havoc in my system is just doing it's own thing.  Maybe it's alternating it's messaging to my adrenals between "go go go produce produce produce!" and "stop stop stop don't do anything!".  While I do appreciate the irony and flat out ridiculousness of that possibility, I must say it's not really what I want to have happen in my body.

How do you medicate something that is not being consistent and shows no signs of cooperating with the laws of consistency?  Good question, we're working on that.  Bottom line is that we're holding until we get the results from tomorrow's blood and urine tests to see what the little rat bastard tumor decided to do this week.  If my cortisol keeps ping ponging around, we may have to block it completely through medication and dose it back in with another medication.  GAH! 

So, sadly it looks like this blog will be here for a while longer.  The only thing I can guarantee is that it won't be dull!

Anniversivus Festivus

What were you doing 18 years ago today?  I was getting married!!  And Wendy, Robin and Dawn were there with us!  Thanks guys!

Keith and I have Festivus plans for today - We're going to see the new Winnie the Pooh movie.  I know, I know...there might be children there.  But we're going to take that chance because it's our special day.  We started the Festivus last night going out to a very lovely dinner at our favorite "nice" restaurant (defined as an establishment where shorts are not appropriate as dinner attire) and had wine, an appetizer and salads in addition to our entree.  Dessert too!  We blew the doors off in celebration of our special day and it was good.  Of course at 6:00 pm when Keith's watch alarm went off so that I'd remember to take my Metty, the reality of my situation crept back in.

We have increased my dose of Metty as it does battle with my cortisol.  It's working to bring down my cortisol level, but not very much or very fast.  So now I'm taking more and we'll see what happens.  I still have a Cushing's belly, and Cushing's induced disrupted nighttime sleep patterns, but those, thankfully, are the only symptoms I'm experiencing.  I appreciate that, but don't want to push my luck.  I'm really hoping that Metty kicks in and starts to do a number on my ever so stubborn cortisol level.  Everybody keep your fingers and toes crossed!

As far as my hip recovery goes, I'm doing great.  Still a little sore, but my leg strength is coming back and I feel really good.  I'm hoping to get back in the gym for some cardio this week in addition to doing my physical therapy exercises and home improvement projects.  Life is returning to normal on that front and it is very good news.

Go forth and celebrate today.  It is, after all, our anniversary.  That's worthy of celebration throughout the land!

To Improve or not to Improve - that is the question...

I'm not talking personal improvement here people, I'm talking Home Improvement!  Paint.  Caulk.  Trim.  Curtains.  Decor.  The whole shebang.  Those of you who have found me on the Facebook machine know that I've been obsessed with working on the house while recovering from my left hip replacement surgery.  That may also seem to be a little strange even for someone like me who loves to pretend I'm an HGTV guru with an ability to turn even the saddest space into a retreat worthy of a high end spa.  However in my convoluted way of thinking, home improvement projects are the perfect way of dealing with my situation right now.  See if you can follow the logic (or lack thereof) here...

When you're trapped in the house recovering from surgery there is nothing else to look at but the TV and the walls.  If you don't like the color of those walls, or the curtains hanging in the window on one of those walls, there isn't much you can do about obsessing over it.  It's always there - taunting you.  Mocking you.  Challenging you to do something about it.  This is how the list of projects begins.  Out of an Oxycodone haze a beautiful home can grow...

The next step is actually starting the projects on the ever burgeoning home improvement to do list.  Here's where, again, Cushing's has served me well over the last year and a half.  I have all the supplies to do most of the projects that need to be done.  Cushing's kind of just put a stop to my activity but only after I had stocked up on painting supplies, home decor fabric, wood stripping supplies, and much much more.  I have a labeler.  I have plastic bins in the basement.  I have OCD.  Need I say more?  So I was all set to pick up where Cushing's made me leave off as soon as my hip stopped being a constant pain level 8 and my energy level and strength came up from below the basement. 

The last step is doing.  Here's where I think people wonder how and why I do it.  My response is "what else is there to do?"  Seriously, what else?  Sit around?  Watch TV?  Read a book?  All good options, don't get me wrong.  But not fitting for what I'm going through physically and mentally right now. I'm stressed out that the Cushing's symptoms are coming back.  I'm starting on a new medication that my body will react to God knows how.  I'm not sleeping.  I'm recovering from major surgery and trying to get physically back to "normal".  And it's really, really hot outside.  All of that is an omen to me saying stay inside and work like a dog.  When all this is over I'll have a beautiful home as well as a healthy body.  What more could a girl ask for?

So I highly recommend the Home Improvement Physical Therapy method.  It's fun, it's productive and it's profitable at resale. 

The Shrek-man cometh...

He's BAAAACCCCKKKKKK!!!!!

Well, not really.  Not as bad as before surely (and don't call me Shirley...).  But Shrek is definitely on the rise. 

Let me back up a bit.  My left hip is doing FANTASTIC!  Couldn't ask for anything better.  Couldn't expect better results.  It's only been a little over two weeks since being filleted like your favorite fish, having a large bone shaved down, a new part pounded in and glued into it, and everything around it kind of put back in place and then sewed (stapled actually) closed.  I'm motoring around without my fabulous pink cane for the most part and returning to my usual activities and chores.  I do still have some mobility issues - I can't bend much past 90 degrees on the left leg at the hip.  So that means things like painting baseboard trim will have to wait.  But for the most part I can kind of work around it by throwing my left leg out behind me when I bend over.  Again, being able to work out and stay active right up to the surgery is serving me well right now.  It wasn't fun, but in the long run I'm so much better off.  My incision is still healing and my hip is still a bit swollen.  But I don't have nearly the same level of bruising and swelling that I had two years ago.  But without those nasty staples in there I'll be healed up in no time.

With that being said, now we're whiplashing back to Cushing's.  It's taken a back seat to the hip issues over the past couple of months because my cortisol level took a dump for some mysterious reason and my pain level in the left hip was hitting Mount Everest highs.  Now that Muffy is well out of my system, my cortisol level is back off the charts high.  This means I have been waking up every day looking for even the smallest symptom to have appeared overnight.  Ready to enter the bathroom and find Shrek staring back at me in the mirror.  No, in reality it doesn't work like that.  But once you lived through the Cushing's transformation into Jabba the Hut once, it's hard not to expect to see it again behind every turn and in every mirror.  The bright side is that I can look back to a little over two years ago when my initial Cushing's symptoms started to appear.  I didn't realize what was happening at the time, but now I see how gradual and insidious the onset was.  But still, I expect to see Shrek every morning.  Go figure...

The only symptoms that I see coming back now is a large belly and disrupted sleep patterns.  Nothing that anyone but me would notice.  And Keith.  When I'm playing spider solitaire at 3am on my phone it's kind of noticeable to the person with whom I share a bed.  My pants still fit so the belly thing is more of an annoyance than a problem. 

My gaggle has decided to start me on a different medication.  It's called metyrapone.  We're calling it Metty.  This drug works completely differently than Muffy.  Metty should work on reducing my cortisol production where Muffy just blocked the reception of all the excess cortisol I was producing.  I say should because, well, this is ME we're talking about and nothing ever really works exactly the way it's supposed to.  I will be doing weekly blood tests here in Kansas City at my local gaggle member's office (Dr. Laney) to document what my cortisol is doing and that my other bodily functions are not totally flipping out in response.  Dr. Nieman (head Gaggle member and all around world wide Cushing's Queen) at the NIH has already petitioned the drug company for a supply of Metty for my use and it has been granted.  Fed-x is in possession of it as we speak and I'll be starting to take it as soon as they deliver it to my front doorstep.

So there you have it my dear readers.  My life continues to spin in the most obtuse of ways.  But life is good, my ass is free of staples, and our 18th wedding anniversary is coming up in a couple of weeks.  Who could really ask for anything more than that???  Go forth and smile.  Appreciate everything.

What not to do when you go to the hospital

A while back I imparted my wisdom on gym etiquette and how to maintain a modicum of dignity during visits to your favorite exercise venue.  I will now extend my ever vigilant helping hands to your next visit to the hospital of your choice.  Either as a visitor or a patient.  I seem to have more experience in this department recently than I'd like, and I need to use that experience for good not evil...

Do not approach the nurses station looking for the cardiac care unit carrying a 12 pack of tacos from Taco Bell.  I don't care if they are your Uncle's favorite.  Just don't do it.

Nurses have, indeed, seen everything.  Your (fill in the blank) isn't special, one of a kind, or even  particularly interesting.  Get over yourself.

Do what they tell you.  Just do it and shut up about it.

Do not invite children to accompany your visitors or bring them to visit a patient.  In fact, straight out tell them to leave the little ones at home.  Or in the car.  Or in Cleveland.  They may be sweet, but they are stresses.  For you, for who you are visiting and for everyone else on the floor of the hospital.  Sorry, but it's true.

Hair gets messy when it's been lying in a hospital bed.  Teeth are grimy.  You feel like you've been run over by a truck and left there in an unattractive gown by the side of the road to wait until you feel human enough do something about it.  And no one who comes to see you cares.  They want to know you're OK, that you're alive and that maybe they can make you smile and feel better for a minute or two.  Let them.  Worry about your breath and your bed head another time.

Contrary to popular belief, a Hospital is not called a Spa for a reason.  It isn't one!  The staff is not waiting on you, they are taking care of your medical needs.  And no matter what it seems like, they are doing the best they can.  Cut them some slack even though you do feel like a great big ball of poopy.

Smile.  Whether you're visiting or a patient, someone is in worse shape than you.  Appreciate what you have don't wallow in what you don't. 

That is all.  I will be solving world hunger and the Greek debt crisis as my next acts of humanitarianism.  Stay tuned...

Relax, shrelax...

I know I'm supposed to be taking it easy, allowing my body to rest and recover from, oh, I don't know, HIP REPLACEMENT SURGERY 11 days ago.  But seriously, do you realize how difficult that is?  Prior to surgery I lived my life at an 8 on the pain-o-meter.  Post surgery, even with 30 staples in my ass and physical therapy exercises and stairs and everything else, I'm seldom hitting a 4.  How do I just lay around and do nothing?  So I putter.  Every trip up and down the stairs will get me better faster.  Every lap around the living room will strengthen my legs a little more.  Every leg lift and squat at the microwave while my coffee is heating is doing nothing but helping me.  And when I need to nap, I nap.  With all the enjoyment and appreciation that anyone should have while napping.  But until I get hit by the random medical malady bus that happens to enter our house every now and again, catch me if you can!

On the Cushing's front, it's roaring back with a vengeance.  To recap, my last trip to the NIH in May found that my cortisol level was way too low and chalked it up to a side effect from taking the experimental Muffy medication.  I stopped taking Muffy, and since then my cortisol levels have been bouncing around like a ping pong ball.  But it seems to finally calmed down a  bit and is consistently rising back up to my 24/7 all cortisol all the time production!  Woo-hoo!  I do love consistency!  This isn't necessarily good news.  I mean, it would be better if my system miraculously went back to normal and my cortisol level just stayed where it is supposed to be.  Yeah, that's not gonna happen.  So we know that the rogue tumor that's living in here somewhere is still cranking away wreaking havoc.  While I am recovering from surgery, my gaggle is working on a new medication plan to try to get the cortisol level under control.  We won't be going back to Muffy given what it did last time, but I feel pretty good that I was able to help find things out about Muffy in the study that may help someone else...and it didn't kill me in the process.  WINNING!

So my advice to everyone today is go forth and putter.  Do something on that to do list.  Have fun.  Laugh.  And appreciate the fact that you don't have staples in your ass. 

Wow!

Well, that's about all I have to say.  Wow.  I am recovering great so far from left hip replacement surgery last Wednesday 6/15/2011.  What a difference two years make!  The last time we went through this process was 6/24/2009 and we thought it went off without a hitch.  This time is 100% better and I chalk that up to having my Cushing's relatively under control and having my entire gaggle firing on all it's glorious cylinders. 

We did some medication madness to pre-dose my body for the trauma of surgery, and I can only assume it was a complete success.  I also was able to continue to workout (although not necessarily comfortably) at the gym up to a few days before going under the knife.  My cortisol level in the weeks running up to the surgery was jumping around quite a bit, but it at least wasn't off the charts high.  While this is still a Cushing's quandary, it worked in my favor in this case. 

Surgery was Wednesday, they sprung me from the hospital on Friday.  Got tired of seeing me doing laps around the nurses station I guess.  There were several people on the ward who remembered me from two years ago and it was like old home week!  Michelle, my physical therapist, and I got all caught up on her now 2 1/2 year old and her softball playing husband, Doreen, my night nurse, laughed about old TV shows and how young everyone else around us seems to be getting, and Jackie the social worker got me all set up with in home follow up care just like last time.  Really, I couldn't have asked, nor certainly expected, a smoother process. 

So now I'm home, doing laps around the house with my walker, terrorizing the dogs with the 4 legged silver thing with the tennis balls on 2 of it's feet.  I have an in-home nurse visiting a couple times a week as well as an in-home physical therapist.  This should go on through next week.  I'm doing my p/t exercises several times a day, tooling around the house and doing little chores as much as possible, and even walking up and down the street with my Florence Nightingale Keith.  Let's face it - I'm bored out of my mind, but the fact that I'm doing so well so far is comforting.

Post-surgery day 5

She is up!

Carol is home and moving around the house quite well. She is using the walker, but doesn't really need it. We have yet to venture outside, but that will probably take place in the next few days.

We had the home health nurse and physical therapist stop by yesterday and they were both very pleased with Carol's progress. So far things are going very well.

Keep the good vibes coming.

Keith

And we are home ...

Sorry for the delay in posting, but it has been a busy few days. You know how it is ... hip surgery, 1.5 days in the hospital and then home.

Home? Holy crap that's fast!

Not that I would wish hip replacement surgery on anyone, but this is the way to do it. First Class on Delta! Hard to get, but nice when you do.

Yes, our princess is comforably ensconced in her castle upstains. The surgery went perfectly (text book, as they say in the biz) and she was doing so well they kicked her out of the hospital.

So now it is a matter of TLC. Erin, Alvin and I are on it. Rest assured  our princess is well taken care of.

Thanks for all the prayers, good vibes and mojo. It is much appreciated.

Keith

Wow! That was fast

Hello all. I just met with the doctor (30 minutes sooner than I anticipated) and he said Carol's surgery was "text book." She did very well and is now in recovery.

Now it is on to the healing process and physical therapy.

Not sure what else to say other than Woo Hoo!

All for now.

Keith

And away we go ...

Carol just went into surgery and we get to wait some more. The estimate is she will be out around 1 or 2 pm. Please understand that is just an estimate and these things can take shorter or longer.

I will update the blog when I know more.

Now back to our regularly scheduled programming.

Keith

Cleaning, cleaning, cleaning...

That's the name of the game for the next 3 days here at Chez Nunes-Davis.  And no, I'm not using the word "cleaning" as a metaphor for life, health or some medical thing.  My house if FILTHY, and it's time to banish the grime.

I'm not a neatnik.  Anyone who knows me knows that.  My OCD never translated into cleanliness.  Not that I'm usually a cesspool dweller either, but a layer of dust on pictures hanging in the hallway doesn't, as a rule, send me running for the Clorox wipes.  But every three or four months, I'll get a bug up my heine about cleaning and attack the grime with all the tools available in the cleaning aisle at Target.  The fresh smell of sterile success sustains me for another 3 or 4 months until the bug strikes again.  Sadly, over the last year or so, those bouts of cleaning took a back seat to trying to survive and maintain during my fight with Cushings.  The collateral damage ended up being the internal health of our home.  It's DIRTY in here!

And why does this matter now?  Because on Wednesday, just 3 short days from now, I'm having my left hip replaced.  For those of you who did not follow this adventure two short years ago when I had my right hip replaced, the recovery process includes a bevy of staples holding the ginormous incision in my ass closed, the dressing on which has to be changed multiple times a day by my faithful nurse Keith (and he looks so cute in the outfit!).  Doing this, and recovering in general, in an environment of filth, flying dust and dog hair, is not the most responsible way to handle my recovery.  So I clean.

If anyone can tell me how to get a dog to use a Clorox wipe, please let me know.  I figure if a husband can learn to use a vacuum cleaner, a dog must have the ability to wipe down the baseboards!  Am I right?  Sadly Alvin is blaming his lack of cooperation on the whole "I don't have opposable thumbs" thing.  Lame excuse.  Totally overcomable.  Erin is above all this home maintenance.  She just harrumphs at the possibility of participating and goes outside and lays in her hole.  So I clean.

The good news is that the house is getting a much needed shine and sparkle.  The bad news is that my hip really hurts!  But the good news is that I'm getting it replaced in a few days.  Did I mention that?  So think of me spritzing, wiping, vacuuming, and scrubbing for the next couple of days.  And then the mental picture can move on to revolving around the staples in my ass.  It'll take more than a few drinks to get that out of your mind...my work here is done....

"Seriously, you do not want to put that in your coffee..."

It's like old times!  Nothing like a jug o' pee in the fridge to get the day started off right!  Betcha wish you were me right now...

Got good news/bad news last week from my last blood cortisol test taken on May 27th.  I left for Red Bluff on May 29th, so I knew I'd get results while out at Mom and Dad's house.  Friday June 3rd I got a call from Penny in my KC doctor's office telling me that my cortisol level was up to 13.7.  That was quite a jump from the blood draw I had taken on Monday May 23rd, and gets me right back up into Cushing's "too much cortisol" range.  I had been mysteriously low in the cortisol department for the last month or so and have been off Muffy trying to get my level back up to normal.  Being the over achiever I am, I shot right past that last week!

This is good news because it shows that my adrenals are rallying.  They had been suppressed for some reason and not producing cortisol even though my pituitary was telling it to do so.  It seems that Muffy had something to do with that, even though it isn't supposed to effect the adrenals at all, because having been off it for a month, my cortisol is going back up.  However, this is also bad news.  We're back to trying to control a moving target that we don't quite know why or how it's going to move.  Cuz it couldn't be easy or anything.  So I'm going to be having weekly blood tests, pee tests and trying medication doses in the coming weeks in conjunction with having my left hip replaced.  Good times!

I'm trying to just put myself in the hands of my gaggle who will eventually figure this, and all things, out.  I rely on their sense of sport and instinct to respond to a challenge to set me and my endocrine system right.  In the meantime, I'm watching for symptoms of out of control cortisol to return.  Will I wake up tomorrow 50 lbs heavier with a face like Shrek?  Will I start to lose the muscle I've been able to rebuild over the last few months?  Will I sleep through the night or return to the days when sleeping past 2am was a luxury?  Tune in to find the answers to these and other pressing questions on the next installment of "Days of Our Cushing's".

Oh, and today's most favorite thing: baby dill pickles...Discuss...

A little hard work never hurts...

So what do most people do when taking a vacation in California from Missouri in the springtime for a week prior to having a hip replaced while watching an unmanaged and unpredictable cortisol level?  Move rocks of course!! 

Does that sound weird?  I mean, for me.  Not for normal people.  I'm out at my parent's house this week visiting and helping out around their house.  Dad and I have been in the process of putting in a rock walkway around the house for a while now.  My last trip out here in March saw any progress rained out as Mother Nature opened the flood gates on California.  Yesterday however, we made up for lost time and accomplished quite alot moving buckets of rocks from the large pile via hand truck and pouring them into the walkway space.  Today sees Mother Nature back with her tricks and this morning's work has been rained out yet again.  We are so close to finishing I am almost considering going out in the rain...but probably won't.

While this might not seem like a traditional way to spend a vacation when hobbled by medical issues, to me it's just keeping on.  Like going to the gym, only with buckets of rocks....and a hand truck.  Totally normal, perfectly acceptable.  And Mom makes grasshopper pie.  What could be better?

Stop the funnel cloud I want to get off!

Were I a little more foreword thinking I would have written this entry while down in the basement with the pups yesterday waiting for the tornado sirens to stop.  However, I was more concerned with the dogs having a bowl of water, my flashlight having working batteries and whether or not I had bars on my cell phone than hauling down my laptop to provide a blow by blow of sitting in a damp room trying to keep the dogs from finding the rat poison and ingesting it as a "light mid-morning snack".  Good news is the radio gets great reception down there.  Bad news is that if the electricity went out I'd have been SOL.  Memo to self:  buy batteries...

Kansas City proper doesn't usually get tornadoes  in the area.  Something about air flow over buildings  and terrain that makes them head for more spread out regions.  But in this year of crazy weather, we were in the path of a few twisters that luckily didn't touch down here, but came close.  Closer than was comfortable for anyone.  With my luck running as it is lately (Cushing's AND a new hip?  Seriously?) I thought it bad form to ignore the tornado warnings no matter how much I wanted to continue to watch the local news weather staff plot the giant red blobs on radar as they closed in on the house.  Any other time I would have figured I was safe.  But these days what can happen has proven it will, so off to the basement we went.

The pups thought we were going for a ride in the car.  After standing behind the toaster for a while, they realized that mommy wasn't coming to open the door and started wandering around.  Eventually they just laid down and started snoozing.  That was the point I knew we'd be fine.  Dogs can tell if something bad is going to happen so if nap time comes, the crisis is over.  So what to do to fill the time until the guy on the radio agrees with the dogs?  I know, let's make some calls!  "Hello mom?  Just thought I'd call and say hi.  Where am I?  In the basement with the pups.  Looks like we've got a tornado coming.  So how is your day going?..."

Finally we went back upstairs after the storm passed overhead.  The big red blobs continued to show up on radar, and tornadoes did touch down in several places way too close to us for comfort.  Thankfully it was nothing like the devastation in Joplin or Oklahoma City, but when it's your home and belongings that have been destroyed, it sure feels like it. 

Take aways from this experience?  Maybe my luck is changing.  And maybe I needed just one more reason to feel grateful for what I do have.  And even if you don't hear the Wicked Witch of the West's theme song playing in the background, go to the basement anyway.

Is that a hat in your toilet...

...or are you just happy to see me???

It's my first 24 hour urine test at home in quite a while and there's just nothing like a big jug of pee in the fridge!  And no, my aim is not that good.  But, because I know you are all curious, this is the magic that makes it all work:

Welcome to my hat in the toilet.  My pee catcher.  Now consider yourself armed with WAY too much info!
I'll be taking my jug o' pee in to the lab tomorrow morning for them to ship to the Mayo Clinic to find my cortisol level.  The 24 hour urine test is a more accurate snapshot of cortisol than a morning blood test since your cortisol level changes naturally during the day.  I'll also have a morning blood cortisol test tomorrow and we'll compare the results.  This will just be one more piece in the puzzle of what to do medicationally going forward.

Here's to all of you NOT having to pee in a hat anytime soon!!

Kisses!

"I simply remember my favorite things....

...and then I don't feel so bad..."

Channeling my inner Julie Andrews this morning.  Minus the Alps and a brood of singing children of course.  But I am appreciating some things lately that I thought I'd share.  Kind of "My Favorite Things part deux" if you will.  They've changed a bit since I posted them months ago.  My world has expanded a bit since then and I couldn't be more pleased.  It's been a bumpy road, but I've never been without things to appreciate and feel lucky about.  Here are some current ones...

My face.  No, I have not turned into a supermodel or had extensive plastic surgery.  I'm basically still the same self-loathing person with body image issues that I've always been.  But I have my face back.  For better, for worse.  It's my face.  I see it every time I look in the mirror or window.  Me.  I'm back.  I'm just me.  Not a sick unrecognizable me.  My face is like that pesky brother (sorry Jim!) that we all know of.  They bug you to no end but you miss them to tears when they're gone!

My closet.   Not because it's fabulously huge or well organized.  Not even because it has lots of fabulous clothes.  But it once again has clothes that fit.  I don't dread going into it because nothing fits or looks decent when I put it on. I can close my eyes and pick anything and put it on.  Jeans too!  None of my clothes are flashy or terribly expensive, but they're mine.  They were mine before Cushing's and now they're mine to wear again.

My diamond stud earrings.  Keith got these for me years ago when we lived in Tahoe.  I always wanted diamond earrings.  What Princess doesn't?  But I'd only wear them for special occasions afraid I'd wear them out, or use them up.  They were too nice to wear.  Hell,  now I wear them every day.  Life is too darn short to let your favorite things sit for another day.  There may not be another day.  Enjoy things now no matter how big or small.  Today is a day too.  Live it.  And live it in diamond earrings!

My gym.  A refuge.  Time for me to watch movies, listen to podcasts and sweat like the little piggy I am.  Sure it's a little painful right now, but after hip surgery it'll be even more awesome. 

1776 the musical.  I have the 1972 movie starring William Daniels and Ken Howard (anyone else old enough to remember the White Shadow??  Anyone?) on my ipod.  I can watch it over and over.  It makes my time on the stationary bike just FLY by.  I do feel a kindred spirit to John Adams...

Starbucks venti decaf soy sugar free vanilla latte.  If you can remember to get all that out, the drink is FABULOUS!  Just what the doctor ordered after getting blood drawn. 

There you have it.  The things that make me especially happy today.  Tomorrow could be different.  I shall keep you updated!  Now put those diamond earrings in and go embrace life!

The results are in!

And the winner is.....ME!

"I'd like to thank the Academy, and all the little people for this honor..."

Oops, sorry.  Just having an Academy award moment...back to reality...

It is true, however, that the results are in from the blood and glucose tolerance tests I took on Monday.  In a nutshell, I am pretty amazing.

I totally aced my glucose tolerance test.  I am SO not diabetic.  This is good news.  It's also good news that my gaggle figured out why I had failed the test so badly before and how to test their theory.  What we all learned is that it is indeed possible to eat too healthily.  Seriously.  I'm not kidding.  Just to review, the theory was that my diet was so clean, and while healthy, included very few carbs, that my pancreas forgot how to metabolize large amounts of sugar which is what the glucose tolerance test is.  So I ate more carbs for a week (crackers, white rice, fruit, orange juice, and one isolated cookie incident that will remain confidential) and aced the test.  My pancreas came through with flying colors and when prepped for the test proved that Carol Davis can still cram for any test you put before her and win...I mean pass.  I still got it!

The blood cortisol test was a little less fabulous.  To recap, my cortisol level, which prior to taking Muffy was off the charts high, was now bottom of the basement low.  Muffy isn't supposed to effect cortisol production so this result is a mystery.  A bit of a distressing mystery since low cortisol has some pretty icky effects just like high cortisol does.  The good news is that my cortisol level went up after not taking Muffy for a week.  The bad news is that it didn't come up very much.  This leads us to believe that Muffy isn't the direct culprit, but my adrenals, for whatever reason, have decided to go on holiday and check out.  Grudgingly they spewed out a little more cortisol this week, but obviously weren't happy doing so.  Next step involves a jug in the fridge and a hat in the toilet.  We in the know call the pee catcher in the loo a "hat" which gets emptied into the jug which has to be kept in the fridge.  The 24 hour urine test is a better indicator of my cortisol level than a morning blood test, but I'll have one of those on Monday too when I take in my big jug o' pee for processing.  We hope that my cortisol keeps rising believe it or not.  Until it gets back up to normal, I am taking steroids to supplement.  How's that for ironic?  We are slightly crunched for time to get my cortisol stabilized before my hip replacement surgery on June 15.  Since trauma to the body effects cortisol levels, we want to medicate accordingly.  But in order to know how to do that I need to be reasonably stable first.  Chances are I'll just kind of fly by the seat of my, well, me.  Playing it by ear seems to work for me.  Don't really know why...

So there you have it.  Next order of business is the hip replacement on the 15th and until then getting drained of blood and peeing in a hat.  Just a normal few weeks in the Davis-Nunes household.  Sometimes you just have to laugh...

Sometimes you're the windshield, sometimes you're the bug...

Just call me Buggy vonBuggerstein...

Not that I'm complaining or anything.  Sometimes these things happen.  This is just my Bug period...

I have my blood and glucose tolerance test on Monday.  After we have the results, we can get back to managing my Cushing's again.  Right now I'm going commando and I don't like it.  My blood pressure is starting to creep up which either means a) my cortisol level is going up, or 2) I'm so stressed out by thinking about whether my symptoms are coming back I'm driving my blood pressure up.  Either way I'll just be happy to get the results and move on.

As if that wasn't enough, I have yet another medical load of crap to deal with.  I found out a few weeks ago that I need another hip replacement.  I know, I know.  It would seem that I cannot catch a break to save my life...or my hip.  Anyhoo, my left hip, which was perfect 2 years ago when I had my right hip replaced, is now completely without cartilage and rubbing bone on bone.  Ouch.  Actually, double ouch.  Is this related to my Cushing's you may be asking?  General consensus is no.  Plain old osteoarthritis.  I'm thinking this earns me the title of "unluckiest medical bug" on the face of the planet.  Did you hear the splat from wherever you are?  Cuz I felt it.

I have hip replacement surgery scheduled for June 15th.  At least now I'll have a matching set.  And who knows?  By the time I'm 90 I may be totally bionic!  Just call me Jamie Summers.  When I was a kid I wanted to be Jamie  Summers.  Little did I know how prophetic that was.

I still look around and consider myself quite lucky.  All of this is manageable.  Sometimes I do feel like just when I make it to a finish line, someone/something moves it.  That can be frustrating and I definitely have those feelings.  But all in all I feel pretty good, my hair is filling in and growing, I can fit in to many of my old clothes, I can get to the gym almost every day, I have great friends and a fabulous husband, and my gaggle of medical professionals are the best around.  So many people out there can't say that.  So I'll take this Buggy period in stride and hopefully I'll emerge on the windshield side of things very soon.  Keep your fingers crossed though - I need all the help I can get!

Home again, home again, jiggety jig...

Well, well, well...I just flew back from Bethesda and boy are my arms tired!

It was another fun filled stay back at the NIH Clinical Center in Bethesda last week.  I got drained of blood, injected with contrast dye and radioactive who-knows-what, poked, prodded, and scanned from stem to stern.  I was also "after" photographed for posterity to go along with my "before" pics from last year.  There was much hoopla over how good I looked.  I consider it more "back to normal" than good, but I'll take whatever compliments that come my way!  Even the security guard at the front gate had to take a second and third look at me compared to my ID badge that has a picture of me at the worst point of my Cushing's condition.  I suppose that I look relatively harmless either way, so he let me in.

Bottom line, there were three major outcomes from the week:

1)  The scans did not find a tumor.  So basically the time spent in the CT, MRI and Octreotide scan machines was glorified nap time.  Good thing I'm not claustrophobic! 

B)  I totally failed my glucose tolerance test indicating that I'm diabetic.  As it usually goes with me, this result does not correlate with my blood sugar tests and my ability to metabolize food.  In fact it kind of contradicts it.  So my gaggle put their heads together and came up with the following conclusion:  I eat too well.  Huh?  I know!  I didn't know that was possible!  But I may have proven that it is.  The theory is that I don't eat enough carbs to give my pancreas enough practice in metabolizing large amounts of sugar.  Since the glucose tolerance test involves drinking a bottle of glucose liquid (FYI, never choose the cola flavored - I go with fruit punch myself) and then taking blood at intervals after, my body couldn't handle it.  It kind of freaked out and didn't know what to do.  So, my assignment to test my gaggle's theory is to eat more carbs this week and retake the test here in a week.  Lucky for me, Shanna the dietitian was able to help me out with how to do this.  I seem to have gotten scared of eating sugar and carbs, but my body needs them anyway.  GAH!  It's all so confusing!  So I came home with lists of carbs, goals for daily eating, and sample meal plans.  Basically she told me to lighten up and eating a little of anything isn't bad. 

iii)  Here's the big find (and most confusing) for the week:  My cortisol level is low.  Way low.  Below normal low.  Below acceptable low.  How the hell did that happen?  Cushing's is over production of cortisol and I have always been WAY astronomically high in my cortisol levels.  At first glance, you may say "this is good, isn't it?"  In a word, NO.  Not good.  I am still over producing the stuff that is supposed to tell the adrenals to produce cortisol, but they're not producing it.  You now may ask "doesn't that mean Muffy is working?"  Again, in a word, NO.  Muffy isn't supposed to effect cortisol levels or production.  It's supposed to only effect the receptors of the cortisol.  So I can still produce cortisol 24/7, but it isn't used by my body.  So basically there is absolutely no reason for my cortisol level to drop.  The only thing my gaggle can figure is that Muffy is somehow doing something to effect my adrenals.  I'm off Muffy now, and in a week, when I go in for my glucose tolerance re-test, we'll also test for cortisol level.  If their theory is correct, my cortisol level should have shot way up.  If not, then we all scratch our heads, regroup, and I'll start taking steroids to replace the cortisol that my body isn't producing.  Ironic, huh?  No one should be surprised here.  It's par for my course.  It is a little scary because I don't know what my body is going to do, how I'm going to feel and how I can keep it under control.  But at this point, I'm not really getting my knickers in a knot over it.  I'll just keep doing what I'm doing and we'll figure it out.  It may be on a weekly basis, but we'll figure it out.

The bad news is that this blog won't end anytime soon.  The good news is that this blog won't end anytime soon!  Again, I'm a lucky girl to have the staff at NIH working on me, and my doctor and his staff here in KC are fabulous as well.  There are many people out there that are sicker than I am and don't have the means to deal with it.  I have nothing to complain about!!