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.