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!!

Me and my bag full of drugs...

Riddle me this Batman - How did the healthiest person I know end up driving downtown to a DEA Prescription Drug Drop Off Day venue with a shopping bag full of bottles and packets from the last year?  Just lucky I guess.  But it was a little weird.

I suppose the good news is that I no longer have to take the handfuls of blood pressure medication that I used to.  And then there was the debacle of the first Cushing's medication I took.  Ketoconazole.  We called it "Kamikaze".  That should have been an omen that the outcome would not be good.  That and the fact that it "works on most Cushing's patients".  That was the kiss of death, and lead to the leftover meds I had to take when my liver started to shut down thanks to the Kamikaze.  Then there was the potassium pills the size of which is appropriate to feeding to livestock.  Add a few random things like muscle spasm meds from my back surgery, and voila!  A bag full of pills appears!

But this experience was yet another sign that life is so much better today than a year ago for me.  It's been a wild ride, but well worth it considering the flip side.

I leave on Monday for another visit to the NIH in Bethesda.  This trip will be not only the usual medication study follow up stuff, but I'm also scheduled to be scanned stem to stern looking, yet again, for the little tumor that is the cause of my Cushing's.  Everyone keep your  fingers crossed that we find it this time.  I know it's a little strange to hope we find a tumor, but that's just the way it goes.  I never could do things the way everyone else does.

Happy spring everyone!!