So how's that resolution coming?

I don't make New Year's resolutions as a rule.  Too much pressure.  I figure if I need to change something in my life, or more importantly, if I want to change something in my life, today is the day to start.  Whether a new year is beginning or not is totally irrelevant.    Besides, if you make New Year's resolutions, somehow that makes it easier to let yourself off the hook than if you make a resolution to make positive changes in your life.  But that's just me...

With that being said, I have made a commitment in 2012 to get my life back into balance.  How is that not a New Year's resolution?  Because I said so.  All you parents out there can follow my logic.  Anyhoo, for the last two years my life has revolved around being sick, dealing, living, and maintaining with Cushing's.  Everything in my life has been seen through the spectre of Cushing's.  2012, for me, is the time to get back to my life.  Which includes Cushing's, but it also includes alot of other things that, quite frankly, I enjoy much more than being sick with a weird "syndrome" that most people have never heard of.

I have to be honest.  Balance is something I have always struggled with in my life.  If it wasn't Cushing's it would have probably been something else I focused on to the detriment of everything else in my life.  But, being the lucky girl I am, Cushing's has allowed me to really understand the importance of balance even in the face of overwhelming and sometimes crushing adversity. Without balance you can't ever get away from the thing that you need to get away from in order to maintain your sanity.  Without balance you can't feel the joy that life in the big picture brings.  Without balance you can't truly appreciate the fact that you have the privilege of walking on this earth another day.

I'm teaching myself how to knit.  I have always wanted to learn how to knit since I was a kid.  I have no idea why.  It probably had something to do with the shiny needles that came in fun colors.  Now that I am actually knitting, and doing it badly I might add, it makes me so happy.  Not because I'm going to be able to make elaborate projects.  I'll probably never progress past the scarf.  But because it's something I've always wanted to do and I finally did it.  Knitting does not bring a zen calm over me when I'm doing it, it's just fun.  And the way I look at it, we all need something that is just fun to balance out all the things we have to do as adults functioning in society that are not fun. 

I'm also trying to lay out my days without quite so much pressure.  I always worry about getting in my errands, workouts, work and "me" time smashed into the day.  Oh, and meals.  I've never been good at understanding that I can move something to tomorrow.  Or next week.  If I usually go to the grocery store on Monday, I MUST always go on Monday.  Why?  Will the world go off it's axis if I go on Tuesday?  Or, God forbid, Wednesday?  No, no and NO.  I'm working on mixing it up and being ok with that.  It's the being ok that's the hard part.  In the meantime, I'll knit scarves...lots of scarves...

Am I making these changes because of the new year?  Not really.  My last trip to NIH got the ball rolling and it happened to be at the end of last month.  The beginning of this month was a new year.  But more importantly getting my life back in balance is something I needed to do, but couldn't really do until I knew that my Cushing's was relatively under control.  Sadly not cured, but under control for now.  So the opportunity to put Cushing's on the back burner presented itself and I knew it was time to grab it.  I still have alarms going off at all hours of the day and night reminding me to take meds, and I still take my weight and blood pressure every day and note it in my log.  But my goal is to make my day revolve around other things and have the Cushing's tasks exist among them not the other way around.  Get back to me in December and we'll see how I did.

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...