Riddle me this Batman...

How is it that I can endure weeks of blood draws, scans, injections, pills, IV's and being radioactive feeling relatively good, but the common cold makes me want to curl up in a heap and surrender!  I woke up on Thanksgiving morning with the sniffles and a scratchy throat.  By the time the day was over I knew I was a goner.  Friday and Saturday I didn't venture far from a horizontal position either on the sofa or in bed.  There was much nose blowing, coughing, sneezing and general moaning about how this is the worst cold ever known to man.  Thankfully this morning found me feeling much better as the dreaded man-killing cold begins to move out of my system...

So far it seems that Muffy is still coexisting well with my system.  I don't notice any reduction in my Cushings symptoms, except that my blood pressure is back in the 120/80 range.  This is good news because even though I'm taking about a million different blood pressure medications for Cushings related hypertension, before Muffy I was still hovering in the 150/100 range.  Whether this change is Muffy related or not, I'll take it.

I'm still watching out for side effects that could be problematic.  Muffy works by blocking the action of cortisol in my system.  I am still producing too much cortisol, but my body now doesn't pay attention to all of  it.  The biggest problem with this is there is a possibility that the cortisol may be blocked too much and I go into something called Adrenal Insufficiency.  And that's bad.  But, in what I am sure is a concerted effort  by the Cushings Gods to drive me insane, the symptoms of Adrenal Insufficiency (AI) are tiredness, weakness, stomach ache, low blood pressure and joint aches.  So I'm supposed to be able to draw the distinction between AI and the need to take hydrocortisone STAT, and the way I have felt most of the time for months.  If anything can make me paranoid and a hypochondriac, this will!

Feeling Thankful

I love Thanksgiving.  I have always felt a warm spot in my heart for a holiday that is built around a calorie-laden meal, falling asleep in front of the television, and getting along with members of your family that, on any other day, drive you  absolutely insane.  But this year, the meal was secondary for me.  Even with pie.  This year I feel so lucky to have such wonderful blessings in my life.  Yeah, I've got some crappy things too.  But here are just a few things that I feel thankful for...

My fabulous husband - The best husband EVER!  No more need be said.
Erin and Alvin - Puppies with issues that make our family complete.
Doctors who care - Sadly not everyone has that luxury.
Friends who care - They keep me going when I need a lift.  They make me smile when I need to laugh.
Good Literature - It transports me to other places when I need to get away from this one.
Hot Air Popcorn - A big bowl of yummy.
Good Running shoes - I'm looking forward to putting them to use again soon.
Sugar Free Vanilla creamer - It makes my coffee taste like cake.
My Heated Mattress Pad - Creates a little cocoon of warm heaven.
Roses - Any variety, anywhere.  Beauty on a stem.
NPR - Makes me think about things I wouldn't otherwise have thought of.
Hope - You can never have too much, and you can have as much as you want.

I hope all of you gave thanks yesterday for the blessings in your life.  Even the tiny little things that bring a smile to your face.  Life is too short not to acknowledge the things that keep us going.  The things that make us happy.  The things that keep our glasses half full.  And pie...

Normal is as normal does...

Ah, to be home.  The most fabulous and wonderful place ever.  The place with my stuff, my food, my trash.  My oatmeal tastes 100% better in my bowl.  Mine, mine, mine.  All mine!  Home...

Needless to say I made it back to Kansas City yesterday pretty much without a hitch.  A mechanical problem with the plane delayed our departure from Baltimore, but other than that it was smooth sailing...I mean flying.  I was greeted with lots of puppy kisses when I got home which made me even happier.  Today I'm nesting and organizing - basically reveling in being home.

I brought a bag full of Muffy home with me as I continue to participate in the study.  Aside from the initial problems with my potassium and sodium, Muffy seems to be sitting well with my system.  I'll be having a blood draw on Friday to make sure nothing is going wrong, and of course many follow up tests and documentation to do, but so far so good.  I even feel like I have more energy.  That could be totally a placebo effect but I don't care.  I'll take it!

To top off the giant helping of normal today, I'm going to Target.  You don't get much more normal than that!  Life is good!

Home Sweet Home

I am going  home tomorrow!  How awesome is that?  My body seems to be tolerating the Muffy medication well so far, and my gaggle here has spoken with my endocrinologist in Kansas City regarding the testing that needs to be done for the study I am in.  There is no barrier for me making a break for it!

They take such good care of me here at the NIH Clinical Center.  But being here is mentally and physically exhausting, and frankly I need a break.  I need to sleep in my own bed, snuggle with my dogs and my husband, drink my coffee the way I like it and live in my routine.  The  fact that there won't be a phlebotomist knocking on my door at 5:30am every day to take vials of my blood is just icing on the going home cake.  Not to mention this is a holiday week and being home for Thanksgiving would do anyone a world of good.  mmmmmm.......pie......

There are some very specific requirements in the study protocol for tests and other things.  Right now it looks like most of it can be done by my Dr. in Kansas City.  That will be great if it happens.  It means I won't have to return here until mid-January if everything goes well.

Tomorrow at this time I should be home.  Know that I will be the happiest Cushie on the face of the planet! 

Ambulatin' and Hydradin' (NOT!)

Saturdays and Sundays are very quiet here at the NIH Clinical Center.  VERY quiet.  I was going to say "dead quiet" but that might be in bad taste considering where I am.  They try to get patients in on Sundays and out on Thursdays, so by the time the weekend rolls around, there are very few patients, only enough Nurses to tend to the patients that are left, and rotating on-call Doctors.  Remember, this is first and foremost a research facility and secondarily a hospital.  My Gaggle is off on the weekends.  Memo to med students: go thee into research!

I decided to focus on back surgery rehab this weekend.  Oh yeah, remember that little incident?  It was the surgery I had at the beginning of October? The one to fix the herniated disk I didn't know I had?  The disk that was impinging the nerve doing damaging it and leaving my left hip in excruciating pain, my leg weak, and my foot flopping, tingly, and no longer under my control?  I haven't really had the chance or the energy to focus on that and today was as good a day as any to start.

Needless to say I woke up this morning feeling relatively good.  And it was a beautiful fall day here in Bethesda that just begged me to get outside.  So after the usual morning rituals of vitals, medications and blood draws, I hit the road.  OK, more accurately, I walked slowly and deliberately using as close to a normal gait as I have had in a long time.  However you label it, I walked outside around the campus for 45 minutes working up quite a sweat in the process.  After lunch and a sufficient rest period, I hit the road again.  I stayed inside this time though.  I did laps around the atrium slowly.  This is hard stuff! 

The good news is that it feels like the nerve controlling my left leg is slowly coming back.  It's going to take alot more work on my part, but I feel like if I put the effort in, I'll get some good results.  So if you see a very slow, tiara wearing, Fabulous Pink Cane using walker in your neighborhood, just know you are in the presence of a recovering Princess!

On the Cushings front, my potassium and sodium levels are back in the normal range.  Sadly I'm still on very restricted fluid intake (thus hydratin' NOT!), but hopefully I'll be released from that when my Gaggle returns on Monday.  Funny how much better I feel when they get things like potassium and sodium levels where they are supposed to be.  Who knew those things were so important?

Where oh where has my potassium gone?

One of the possible side effects of taking Muffy is a drop in potassium.  Yesterday mine fell through the floor.  I don't know why that's a really big deal, but it is.  Bottom line is that from about midnight to 5 this morning I was either taking, waiting for, or being tested after IV bags of potassium.  Unfortunately potassium isn't a pleasant thing to have dripping into you and brings more than a little burning and stinging with it.  Enough to keep even seasoned sleepers like me awake and uncomfortable.  The good news is that by morning that level was stabilized and I can take pills to keep it where it needs to be.

My sodium level has also dropped today which is not quite so easy to manipulate.  So I'm on restricted fluids right now to see if my body can straighten that out. For a water drinker like me, this is really a test of wills.  I've been thirsty all day...maybe it's psychosomatic...

The scans I had this week did not turn up any tumor.  The news is disappointing, but not a surprise.  We will keep looking at probably 6 month intervals theory being to give the tumor time to grow and show up on scans. 

I'm continuing to take Muffy the study medication and aside from the potassium and sodium issues it seems to be setting with my body pretty well.  Now we just have to wait to see if it is having the desired results on my cortisol level.  Hopefully we'll know more about that early next week and I'll be on the road to recovery.  If all your appendages haven't cramped up yet, keep them crossed for that!

Can you see my aura?

Today I was radioactively awesome all day.  Up, down, back and forth the Fabulous Pink Cane and I went to the neuclear medicine wing.  Of course the downside, aside from the whole radioactive thing, was that I couldn't eat all day.  Nothing makes a Cushings girl crankier than when you don't feed her.  Especially when you load her up with chemicals.  So immediately upon leaving my last scan I hoofed it to the nearest snack counter in the lobby for contraband munchies.  A girl's gotta do what a girl's gotta do...

It looks like Muffy has kicked in and my blood pressure is coming down markedly.  This is really good news and a much needed little plus to the situation.  However, I won't find out what effect Muffy has had on my cortisol level until I meet with my Doctors tomorrow.  Muffy needs to bring my cortisol level down into normal range, and while I'm not sure if it happens this fast or not, that's the goal.  The Doctors didn't really have any question about whether the study drug would work, it's just whether it will work enough and whether my body will tolerate it.  So far so good on the tolerating part.  It's the work enough part that the jury is still out on.  Keep all those appendages crossed!

Tomorrow when I meet with my Doctors I will also have the results from this week's scans.  There is always hope that the rogue tumor will be found on one of them.  Hope does spring eternal as they say.  If that's the case we make yet another sharp turn on the Cushings superhighway and get rid of the little bugger.  If not, we make a plan based on the blood work, medication, and study protocol.  In any case, I should know before the weekend what's going on.  And when I know, you all will know.

Go forth and be fabulous!

A teaching moment...

I thought I'd take the opportunity to enlighten you on some of the knowledge I've gained during my stays here at the NIH Clinical Center:

• When someone tells you "it'll just be a little prick", get ready to peel yourself off the ceiling
• Peeing in a jug gets old after 4 days
• There is no time of the day or night that is off limits to get blood drawn
• Your poop matters
• When stuck in a scanning machine with your arms over your head for 45 minutes, your shoulders start to hurt...and your hands, elbows and biceps go numb
• When stuck in a scanning machine with your arms over your head for 45 minutes and you have to pee, tough luck
• When injected with radioactive goo, you will set off personal radioactive detectors
• The number of times a medical professional tells you to relax is inversely related to the amount you actually can relax
• No matter how bad you feel, someone always feels worse

Today I started the study medication that will hopefully succeed in bringing down my cortisol level into the normal range.  Keep your fingers crossed it works without inflicting side effects that are more detrimental than the Cushings itself.  In the meantime, I'm still getting scanned, drained of my blood and peeing in a jug at all hours of the day and sometimes night.  Neither the fun nor the hope ever ends...

test 1,2...test 1,2...is this thing on???

Today found me falling back into the routine of blood draws, pee collection, scans and drinking funky stuff then seeing what it does.  Woo hoo!  Part of what we're doing is getting the required baseline data together for the "Muffy" (Mifepristone) medication study.  Those items need to be completed before I start taking the medication on Wednesday morning.  I also have a couple of more scans to have done now that we're back looking for an ectopic tumor.  So I am just busy busy busy!

I did get a bit of good news today.  It seems my body's ability to deal with metabolizing sugar is holding firm.  It's not getting worse.  That is great news.  I don't know why that is, but I'll take it.  Given that there are symptoms of my Cushings that have gotten worse since my last visit here, I am very happy.  Maybe that means my diet lock down has helped?  Who knows?  But I'm not taking a chance on that plate of nachos bigger than my head quite yet. 

One of the more interesting (to me if no one else...) baseline tests I did today for the drug study was a standard cognitive test that they give to all the participants.  Not anything complicated.  Just some memory, logic, and common knowledge questions.  Cushings can markedly effect your ability to concentrate and think clearly.   While I got all the questions right, it did take much more concentration than it should have.  It does prove, yet again, how much worse off I could be right now.  I could be going through this while having trouble thinking too!  I mean real trouble!  That would definitely be bad...

Tomorrow is more tests, more peeing in a jug, more blood being taken, more scans.  That should keep me busy until we start on "Muffy" medication to try to get my cortisol levels down on Wednesday.  It's an exciting week!!!

What's up next for the Princess?

OK, so we know that no tumor was found during my Pituitary surgery.  The Surgeons are expecting pathology results tomorrow, but are not hopeful that anything is going to be found.  My Cortisol levels are not coming down at all.  That in and of itself is puzzling to the Neuro team just because any shock to the Pituitary should have an effect on what it puts out, and mine, after being chopped up and left with 30% of what it started with, is still putting out like a house on fire.  At least we know my pituitary is healthy!  You may be asking "just where does that leave our Princess?" and after meeting with my Gaggle of Doctors on Friday,  I can partially answer that question...with caveats...and variables...and contingencies...

We have kicked the Cushie-mobile into reverse, backed up the pituitary off ramp, and merged back onto the ectopic tumor highway.  The NIH detectives have returned to looking for a rogue tumor somewhere in my body that is sending signals to my adrenal glands to produce cortisol full speed 24/7. I have several more muy radioactive-o scans to complete during my (extended) stay here that may still turn up the little bugger.  These are scans I didn't have during my September visit because we decided that the probability was higher that the tumor was in my pituitary.  The Doctors don't want me exposed to alot of extra radiation if I don't need to be.  So keep your fingers crossed that we will actually find the source of my Cushings in one of these scans.  Based on my track record up to this point however, while I am cautiously optimistic, I just can't really cross that threshold into hopeful.  

Where does that leave me in the meantime?  Medication.  Medication to control my cortisol level.  More specifically to bring it down.  My Endocrinologist in Kansas City prescribed the most common and well-tolerated medication for cortisol control way back in June, but as we have seen so many times before, I didn't react quite the same way to it as most other people did.  I had quite a bad reaction to it actually that involved my liver function and we pretty much can scratch it off the list of viable drug options for me.  That leaves two options that are currently on the market - one that is so toxic my team of Doctors does not even want to try it, and one that odds are will be ineffective on my condition based on how high my cortisol levels are.  Does anyone else feel that we've just gone down that one way street that ends with a brick wall in a car that has no reverse gear?  But this is the NIH, and I am in the care of the best Cushings team anywhere. It seems they have one pharmaceutical card left to play.  There is a study out of France on a drug called Mifepristone (Keith and I are calling it "Muffy" for short) that looks promising in the control of Cortisol production in ectopic Cushings patients.  We're going to try this medication hoping that it will get my system back in order while we continue to look for the root source of the Cushings.  If everything goes according to plan, I'll start taking that on Wednesday.

And there you have it.  Re-cross those fingers and toes and keep sending those positive vibes.  This week is going to be busy and hopefully will yield some good results.  I will, as always, keep you posted with breaking developments and nuggets of humor along the way!

Are you smarter than a 5th grader??

The answer for Keith and I is apparently not...

We decided to play a new board game last night here in the day room of the Neuro unit.  They stock quite the variety of fun games and activities with which visitors can occupy themselves.  Wednesday night we played Scrabble, one of Keith and my favorites.  We usually play without controversy, and always without keeping score (Does that make it Socialist Scrabble?  Discuss amongst yourselves...).  Last night we decided to put our expansive California public elementary school education to the test and play a game that involved identifying states on a US map and, if you really want a challenge, identifying the capital of the state.  Needless to say we made sure the day room was empty before we began so that there would be no witnesses to the humiliation we were anticipating.

We opened up the board that was just a map of the United States with each state labeled with a random number 1-50.  There was a spinner whose arrow would point to 1-50, a cheat sheet with which state corresponds to each 1-50 number and its Capital, and dice for moving your marker around the perimeter of the board.  And away we went.

Almost from the first spin of the arrow we were in trouble - and we were just trying to identify the location of the states!  We didn't undertake the naming of the states AND capitals until our next game!  We learned immediately that the northeastern seaboard is a problem.  Too many states, too small an area and no symmetry.  Who designed that nightmare anyway?  I do believe that every state up there was identified as New York on one spin or another.  Pretty soon every state in the Union was deemed New York on first glance before any serious attempt was made to identify it.  The southern gulf states would have been a  mystery had they not been covered in oil sludge and by the news media within the past 6 months.  I am convinced that I was never taught the mid west states in elementary school due to a California bias and conspiracy probably stemming from language hidden deep in the Farm Bill.  Western states, while few and spacious, could only be named if entered or exited during some memorable (and not always in a good way) car vacation taken during childhood.  And did anyone else notice that as soon as they moved the back seats of the car farther away than dad's arm length from the front, they had to start putting in DVD players, cup holders and electric shock equipped seats?  Again, discuss amongst yourselves...

I did the best I could to drag state location knowledge from my grey matter and didn't even play the "but I just had brain surgery" card.  I got states like Arkansas (thanks to Carter and Jen), South Dakota, Alabama, Oklahoma and a few others much to my surprise.  And there were some that I just knew.  Of course I also blankly stared at New Mexico completely mystified as I did with Massachusetts, New Hampshire (yes, as a matter of fact we did live up there for a time...), Delaware, and Montana.  Keith beat me around the board on which state was which, although he got mired in the northeastern seaboard at one point and almost didn't get out.  That was about the time that every state became New York and we were laughing so hard we were crying.  Milk coming out of the nose laughing.  Disrupt the whole Neuro ward laughing.  Stress relieving laughing. 

I did much better when we moved on to identifying not only the state but the capital.  I could remember most of the state locations from the first game (technically is that cheating or having a good memory??) and somehow I have retained some of Mr. Schaeffer's 6th grade drilling of state capitals.  "No, Billingsly is the actress that played the Beaver's mother, not the capital of Montana."  "Yes, Arkansas does have a capital."  "I swear, Pierre IS the capital of South Dakota." 

Bottom line here is that we needed a good laugh and we got it.  Keith and I may not be able to identify where we are on a map, especially if we're anywhere on the northeastern seaboard whether we've lived there or not.  But we proved for the millionth time during  our 17 year marriage that we can laugh our asses off in the face of anything.  Adversity, stress, peeing in a jug, no matter what it is.  Laughter makes it all bearable.  That and a good map...

I just had brain surgery...

...what was your name again??  Ha, ha...just a little brain surgery humor!

First of all, let's take a minute to ponder this little fact.  On Monday afternoon (not even at the ass-crack of dawn) I had brain surgery.  On Wednesday morning I was in the shower washing my hair and not hooked up to any drugs or catheters.  Amazing?  Yes, I think so too.  Tuesday was a bit ugly, but not as bad as Keith, I, or the Doctors expected.  In fact most of the people who saw me Tuesday said I looked great.  Boy do they have a warped sense of "great", but I digress...

The pituitary surgery went great.  They took out 70% of the gland.  Did anyone out there know that you only need 20% of your pituitary?  I didn't either.  So they left me 10% more than I need!  Awesome!  The slightly bad news is that no tumor was found.  That doesn't mean it isn't there and will be found when they dissect and study the tissue they took out.  But that will take weeks.  So for now, the next step is to monitor my cortisol levels starting tomorrow and see if they come down on their own over the next week or so.  If they do, that means that the tumor causing my Cushings was in the pituitary tissue that was removed.  If my cortisol levels stay high, then we know that the problem did not originate in my pituitary and we have to continue to look for it somewhere else and start with medication. 

I appreciate the fact that most of you have never had pituitary brain surgery before,so I'll include a short description of the procedure.  Squeamish readers please skip the next paragraph....

The neuro surgeons made an incision between my upper lip and my front teeth so a)I have no visible scar and 2)no hair shaved on my head.  From there they went up through my nose, broke a couple of small bones at the back and into my brain to the pituitary.  The surgeons, one of whom invented this procedure, took out the portion of the pituitary that has the best odds of housing the tumor.  They played the odds game after doing some micro-slicing to see if they could find something.  After taking out what they needed to, they filled my nose with packing, sewed up the gum line under my lip, unscrewed my head from the holder, and sent me off to ICU where I spent a thoroughly unpleasant night.  A little pain medication, a few tears, and some great ICU nurses got me through Monday night.  Tuesday morning they unpacked my nose (NOT fun) and deemed me able to be packed off to the neuro unit where I will reside probably until Saturday.  Tuesday afternoon was pretty much just getting adjusted to the new surroundings and being monitored by the Neuro Doctors and Nurses.  I was back on solid food (amazing!), but my mouth was pretty sore, so it was soft solid food on Tuesday.  But this morning I tried pancakes, and chewing them went fine.  So today there was a sandwich for lunch!  Granted it had to be deconstructed a bit to get into my still sore mouth, but it was still a sandwich!  Did I mention this is Wednesday and I had brain surgery on Monday? 

So I'm hanging out in the Neuro ward here at the NIH Clinical Center, peeing in jugs, getting blood drawn, hoping that my cortisol level is falling as I write this.  You all hope for it too and maybe I can catch a break!  And of course, I will keep you posted of the events along the way!

Surgery is complete

Carol's surgery is complete and she is stable, which is exactly as it should be. The surgery went very well. There were a number of contingencies and back up plans at the start and none came into play during the operation. That is very good news

Unfortunately, the bad news is there was no tumor. That doesn't mean the pituitary gland is not the source of Carol's Cushing's, but there was nothing out of the ordinary. So the doctors took a part of the pituitary (you only need 20% for normal function) and sent it to pathology for examination.

So, once again, we wait. We should know more Wednesday or Thursday.

I will update everyone when I know more and in the mean time, please keep those good thoughts coming.

And away we go

Just to keep everyone up to date. At 1:30 pm EST Carol went into surgery. It may take anywhere between 2.5 and 5 hours so we have a bit of a wait ahead of us. I will try to keep everyone posted when I know more.

Carol was slated to go second today so that is why we the surgery is happening in the afternoon.

Keep thinking good  thoughts.

Keith

Latest update

Still waiting ...

It's go time!

Junior cadet blogger reporting for duty!

This is Keith. While Carol is away the next few days I will be filling in here at the Cush life. Check back later. As I know more I will be sure to update the masses.

What are we doing right now? Sitting... waiting ...and waiting.

There once was a Cushie from Denver...

Oh, come on.  Don't tell me you've already heard this one!

There is another Cushie down the hall from me here at the NIH Clinical Center and I had the pleasure of meeting her yesterday.  I had seen her on Friday, but Christie is lean, in shape - very outdoorsy looking - and very energetic.  It didn't even occur to me she might have Cushings too seeing as outwardly she is the exact opposite of what I am  right now.  But she does. 

Christie's Cushings has come back after dealing with it here 3 years ago.  Her cortisol levels are as high as mine, but she isn't seeing symptoms yet.  They found the problem early since she gets tested periodically based on having a history of Cushings.  The source of her Cushings was an ectopic tumor in her lung behind her heart that was removed along with a portion of her lung and lymph nodes.  But as can happen, they think the little bugger may have grown back and the gaggle of NIH Cushings Doctors are hot on it's trail.

We compared crazy symptoms and reactions to medications, and best of all for me, she showed me her before and after pictures.  Before the Cushings went away, and after it went away that is.  I must say, I never would have recognized the person standing in front of me as the one in the picture with Cuishings.  Just like no one here recognized me as the person in my pictures before Cushings.  Now I have proof that someone inflated like a blow-fish, walked around like Shrek, but went back to their normal self as soon as their cortisol levels went back to normal.  Not overnight, but it does happen.

Woo-hoo!  As God is my witness, I shall be able to wear a ball cap again and a necklace again! 

Has anyone seen my patience??

Because I think I lost it somewhere between Kansas City and Maryland...

I had a lovely blog post in mind for this morning when I went to bed last night about how lucky I am to be receiving the level of care and professionalism that is being given to me here at the NIH Clinical Center.  After a long Friday of tests and talking with Dr's, Nurses, Techs and medical staff of all sorts, I am even more thankful to be here if that is possible.  But, knowing me, sometimes I wake up on a different side of the bed and this morning it was the impatient one...

Every now and again I get overwhelmed by the desire for this whole nightmare to be over.  And I mean overwhelmed.  I want to get back to my life, my body, my activities, my happiness - all the things I worked so hard to cultivate and nurture in my life. The last year and a half has been dominated by medical issues, pain and limitation and quite frankly I'm tired of it.  Yes, you heard me.  I'm tired of it.  I'm human, so there it is. 

Monday's surgery is the light at the end of the tunnel.  No matter if they find the little bugger in my pituitary that is causing the Cushings or not, I will be on the road, some road, to recovery.  If they don't come up with a tumor, we opt for a medication based solution.  If a tumor is found, they get rid of it and we start getting my system back to normal from there.  Either way, I'm on the road to somewhere as opposed to where I've been for most of 2010 - in the breakdown lane on the medical highway to nowhere.  Funny thing about a light at the end of a tunnel though.  It makes you want to pick up the pace to get there quicker.  Sprint to the finish if you will.  And yet the clock knows nothing of sprinting and pace.  It knows only the same click of seconds, minutes and hours, and no amount of wishing makes it go any faster.

So this weekend is all about patience and not watching the clock.  I want Monday to get here NOW, but that just ain't gonna happen.  So I will amuse myself as much as I can, read, walk, nap, and bide my time as it passes.  But truth be told, I'm tired of being patient, I'm tired of waiting, and I'm tired of being tired.  In case you thought I was handling my Cushings like a Saintly figure, rest assured I have my moments.  Rest assured I am human.  Rest assured I am still the Princess that you all know!

It's deja vu all over again

And not just because Jerry Brown got elected Governor in California...What ever happened to Linda Rondstat anyway??...

Here I am back at the NIH Clinical Center in Bethesda MD and it's like I never left.  I've already been poked and prodded this morning, had blood taken and peed in a cup.  My day could be called complete already just based on those activities.  But wait, there's more!  I have something called a "pre-anesthesia clinic" this morning, and a couple of PET scans this afternoon.  Boy, the fun never ends here.  I tell you what!

Getting here yesterday was uneventful but exhausting.  Even with the Fabulous Pink Cane walking is taxing on the old legs, and couple that with long periods of sitting and my poor muscles didn't know which way was up.  It was nice to fall into bed last night, even if it was a hospital bed, and even if it didn't contain two pups to snuggle with.  But today I feel good and ready to get this party started. 

Pituitary surgery is Monday so start thinking good "they're going to find something in there" thoughts now.  The sooner we find something the sooner I can put Cushing's behind me and get back to my "normal" life!!  And my plate of nachos...

Can I get a flock???

We've all heard that counting sheep helps you fall asleep.  I've never understood why.  Why sheep?  Why not robots?  Or ants?  Or puppies?  Why sheep?  I need to know because they aren't working for me.  Although, truth be told, the robots aren't doing any better...

I haven't had a decent nights sleep in I don't know how long.  I may have mentioned it here before, but Cortisol production in a "normal" body goes down at night so you can sleep.  If you have a body like mine in which Cortisol production never goes down, it's a struggle to get it to sleep all the way through the night.  And this is a problem.

I love my sleepy-by time.  Love, love, love.  I would have put it in my "Favorite Things" post, but couldn't get the pups to take a decent picture of me sleeping.  It's a lack of thumbs thing.  Anyhoo, my sleepy-by time has really taken a hit and I'm starting to get a little pissy.  Let's face it - you would too if you're staring at the ceiling every night between 1am and 4am wondering whether to crack open the book on the bedside table, or just give falling back to sleep a go because maybe this time it'll work.  Admittedly, sometimes it does.  What wonder!  What Ecstasy!  But more often than not it's the book or solving all the world's problems in the wee small hours of the morning.   FYI, you'll be getting the memo on Israeli/Palestinian peace in a future blog...

Bottom line is that among all the symptoms of Cushing's I'm looking forward to shedding when this saga is over, insomnia is among those at the top of the list!  I may just go into hibernation for a few weeks.  Take to my bed as it were...with a plate of nachos bigger than my head and ice cream...lots of ice cream...  

Don't blame global warming for hell freezing over!

Rather give the Giants credit because they WON THE WORLD SERIES!!  Take an umbrella with you today wherever you go - flying pigs are predicted.

For those of you who do not follow Bay Area baseball, or Major League Baseball at all for that matter, the San Francisco Giants took the World Series last night by besting the Texas Rangers in Arlington TX 3-1 in game 5. Since moving to SF from NY in 1958, the Giants have not won the series and in this house, the victory was sweet...and loud.  The pups retreated to upstairs as my adorable husband screamed like a little girl when the final Ranger out brought a close to the game and the series.

I must admit, I didn't follow the Giants with anything more than a cursory interest for most of this season.  Their propensity for snatching losses out of the jaws of victories is legendary and quite frankly a little frustrating if you are trying to be more than a fair weather home town fan.  I also didn't recognize any of the names of the players.  Little did I know that this rag-tag (can you really be rag-tag when earning more money in a season than most average people do in a lifetime?) group of baseball players was just the underdog I should hitch my cart to for inspiration.

The media says that the team is made up of "a rare mix of veteran rejects and budding stars".  How awesome is that?  That's exactly who I want to bask in the glow of victory.  The players who others wrote off, and those who people have, as of yet, not much confidence.  Either way, internal strength and unwillingness to accept the limitations imposed by others helped this team get to the pinnacle of baseball this year.  That and  a  little luck.  

I may not be vying for the title of Best Team in Baseball (I'd like to though...Brian Sabean, call me!) but it's good to know that old guys who were written off, and young guys who are a little unconventional can pull it together to defeat a viable opponent,  I'm not saying which group I identify myself with more, but suffice it to say, I'm taking a page from their playbook.