Remember me?

It seems like quite a while since I posted an entry here.  I couldn't come up with anything to say.  I know what you're saying right now - "Carol couldn't come up with anything to say?  That's a first."  Yes, yes it is.  But be that as it may, my mom always told me "if you can't say something good, don't say anything at all".  You do the math.

Christmas came and went without much fanfare here in the Davis-Nunes household.  Our parents spoiled both us and the granddogs and my friend Wendy sent a care package with goodies for us all.  I was feeling kind of funky though.  Kind of light headed and unsteady.  I took my blood pressure at lunch time and it was 87/58.  No wonder I was feeling loopy!  After a hearty Christmas meal, and perching on the sofa for the rest of the day, my blood pressure was back up by bed time. 

While this episode wasn't the most pleasant in the world, it was actually good news.  Cushings makes your blood pressure go up...way up.  And I've been on a daily handful of blood pressure medication for months trying to keep it in line.  Before I started taking Muffy, it was hovering around 145/95 even with all the medication I was taking.  It has since dropped to the 110/80 range since Muffy.  But it was getting even lower than that in the run up to Christmas culminating with the 87/58 reading.  This means Muffy is working!  Let's take a moment to appreciate that.  Working with my gaggle at the NIH, we have eliminated two of the blood pressure medications from my repertoire.  Now we watch and wait to see if my blood pressure stays around normal, or gets too high.  I'm ready to have to start taking one of the meds again, but so far, so good.

I hope all of you had a great holiday! 

Riddle me this Batman

What do you do when you don't want to get out of bed in the morning?  I don't mean hit the snooze button, pull the covers over your head, call in sick to work, not wanting to get out of bed.  I mean "I don't want to partake in life today" not wanting to get out of bed. 

Every morning I go through a conversation in my head as I lay in my warm bed snuggling with Erin and Alvin.  I don't want to get up and start a day that is going to be like yesterday and many days before.  I don't want to live another day with a body that isn't my own.  Muscles that are sore all the time.  Legs that don't do what I want and need them to do.  Taking a shower is an exhausting task.  Getting in and out of pants, and getting dressed in general, is so hard.  Just try getting in and out of the car with legs that are so weak you have to lift them up manually.  Walking is still hard as the nerve in my left leg recovers.  Blah, blah, blah.

And yet, I still get up.  I still shower.  I still dress.  I still drive and do my errands.  I still walk. And I hate it.  It hurts and it's hard.  I'd rather just stay in bed all day where nothing hurts and it doesn't make me so tired I feel nauseous.  I just keep thinking that maybe today my nightmare will be over.  Maybe today I'll feel normal.  Maybe today I won't have to find a reason to get out of bed.

As time goes by...

I love getting Christmas cards.  Even if it's the only time I hear from people, Christmas cards are the best.  I usually get a picture of the family, and if I'm really lucky, a letter with a synopsis of what everyone has done through the year.  Christmas cards allow me, from afar, to see what my friends and their kids look like and what they've been up to.  I eagerly open every card to see what is inside and feel a twinge of disappointment if there is no picture and no letter.  But I'm finding this year my reaction is a little different.

This year when I look at the smiling faces on the cards, and read about all the activities the senders are participating in, I'm not only excited and interested, but a little envious.  Even if the update is about coaching little league, PTA meetings, and work.  When I look back at 2010, I've got nothing but dealing with medical issues.  No gym, no triathlons, no vacations, no home improvement projects - none of the things I love to do.  Just an ever expanding nightmare of doctors, tests, scans and ultimately no end in sight.

I'd like to be one of those people you see on Oprah that explain how a horrific tragedy in their life turned out to be the most positive thing ever.  And I may get there, but not quite yet.  That doesn't mean I don't recognize how very fortunate I am.  I have insurance, awesome doctors in Kansas City and Bethesda, a husband who is the most awesome husband on the face of the planet, and friends and family that offer support and love without hesitation.  Yes, I am a very lucky girl, but my medical situation sucks big time.

Everyone has some cross they have to bear on any given day.  Cushings happens to be mine.  My number came up, and better me than someone else who wasn't as healthy as I was.  But I lost 2010 and I can't get it back.  So I will continue to live through the activities of others until my time returns.  I don't know when that will be, but that's what keeps life exciting.   

In a holding pattern...

After about 30 minutes of staring at a blank screen, I realize that I have nothing interesting to say today.  Not that what I say every other day is interesting, but you know what I mean... 

I'm still taking Muffy according to the study plan still without any negative effect on my system.  My withered leg muscles are getting a little bit stronger every day.  My blood pressure has come down alot, but not enough to start getting off all the medication I am on to control it.  I've lost a few pounds, but nothing you can notice if you look at me.  My energy level, while inconsistent, seems to be getting better.  So we know Muffy is working, but not as fast as I'd like, and without amazing results that would be good blog-fodder.  I'm just kind of hanging out until things start happening and my symptoms start improving more noticeably.

I had about a gallon of blood drawn yesterday for tests to make sure that Muffy isn't doing any damage.  Thankfully this happens every two weeks now rather than every morning at 6am at the NIH! I'm not anticipating anything bad being found, it will be interesting to compare these results to the results from two weeks ago.  Call me a dork (and many have) but that stuff is really interesting to me. 

So there you go.  You are now up to date with my Cushings status.  Keep those positive vibes coming!

Bah, Humbug!

I may have mentioned it here already (I can't be expected to remember everything I write, can I?) but I'm seriously thinking about taking a mulligan on Christmas this year.  I mean, we have our tree up and decorated, and our stockings are hung by the chimney with care, but I'm just not feeling it.  Even with every other commercial on TV shilling Christmas gift possibilities, the neighborhood  houses being adorned with wreaths, lights and six foot tall candy canes, and holiday cards arriving in the mail. 

If you ask me "what do you want for Christmas?", I can't come up with anything.  It's not that I don't want or need anything.  And I love getting presents as almost as much as I love giving them.  But everything seems a little silly and secondary in relation to getting my life and my body back.    All I really want is for my Cushings to go away, and I doubt that can fit on the Fat Man's sleigh. 

Maybe I'm just worn out.  Too tired to muster Christmas cheer.   I certainly didn't think I'd still be dealing with Cushings at this point in the year when I was diagnosed WAY back in April.  I never assumed that my life would be revolving around doctor appointments, medications and scans either.  But I am, and it does, even though I'd give almost anything for that not to be so.  It's hard to get around it no matter how much I love a good Christmas carol and cup of nog.

So this Christmas I will take a mulligan.  Well, maybe just a partial mulligan.  I won't skip Christmas completely - after all, I do have the tree and stockings up.  But don't be surprised if you see six foot tall candy canes in our yard next spring. 

Let them eat nachos!

I have often said in this blog as well as verbally to anyone who would listen, that all I wanted to do when I didn't have to watch my diet so closely was eat a plate of nachos bigger than my head.  Why nachos?  Because I love them in all their cheesy, beany, meaty, chippy glory.  Why a plate bigger than my head?  Because when you've been so good for so long anything less than overindulgence is just wrong.

Yesterday was the day that my strict diet was kicked to the curb and nachos were consumed! 

My friend Carrie and I decided to make an outing to eat nachos, and do a little shopping at our favorite JC Penney outlet.  Carrie and I are quite the pair.  She has endured surgery and just finished her last round of chemo in treatment of breast cancer.  For the two of us, energy and stamina is unpredictable at best, and appetite comes and goes.  Yesterday the stars lined up and the heavens shone on us, and we both felt good enough to go big!

I won't drone on about the pleasure I derived from our plate of nachos.  Sometimes when you anticipate something for so long, the real thing can fall short of expectation.  That was NOT the case here.  The nachos were eaten and enjoyed beyond measure.  I am including a picture of the best nachos ever below:

We also made a great effort at the JC Penney outlet.  I even picked through the racks in the really big girl (remember, I look like Shrek these days) department looking for a things that might fit me.  We hit most of the departments and ended up in catalog returns testing out the sofas.  OK, it was only one sofa, and we weren't so much testing as collapsed on it.  Our energy had run out.

It was a great, normal few hours for two girls who don't feel normal about very much in their lives right now.  And let us not forget that there was a plate of nachos bigger than my head.  And it was good.....

I'm a rakin' fool

I know it sounds weird, but I've always liked raking leaves.  Most people hate it, but I like it.  It makes your yard look nice and it's a great workout.  Unlike many of the chores in and around the house, there is a noticeable change for the better in the appearance of a yard after a good raking.  Since I've been home from the NIH, I haven't had the energy to go out and rake.  I stare out the window at the growing layer of dead leaves wanting to go out and rake up a bag or two.  Keith has managed to keep us from drowning in leaves, but he isn't as passionate about raking as I am.

Maybe the leaves this year mean more than in previous years.  This year I can't do the work in the yard that I want to.  That is much different from being able to do it and just not wanting to.  Maybe raking has become a symbol of the helplessness I feel because my body isn't the same one I used to have.  It doesn't look the same, feel the same, or act the same as it used to.  Or maybe I just like a neat yard...

Well, this afternoon I was a raking fool in the back yard!  I was having a good energy day, and decided to rake a little rather than just staring out at the leaves.  I made several big piles of leaves, and raked up a significant amount of doggie-doody as well.  I only made a small dent in the work that needs to be done, but while I was raking and bagging I felt normal.  A small bit of normal, but normal none the less.  And normal is good...

The little engine that barely could.

Keith is in our nation's capital for a conference.  It's only been a couple of days, and he comes back tomorrow.  In the big scheme of his business trips, this one is Shorty McShort.  In his absence I am charged with walking the pups.  This is nothing new, but my current physical condition makes those walks far more interesting.

The first little issue the three of us had was getting down the steps in front of our house.  The pups know that Mom isn't good at stairs right now - they go slow and stay behind me when we're on the inside stairs.  So I figured that mindset would apply to the outside steps as well.  These are dogs and I'm working out in my mind what they are thinking.  Perhaps I should have seen that as my first mistake.  After locking the front door we all made it to the first step and, while I was contemplating, balancing and focusing, Erin and Alvin had already made it to the bottom and were headed to the walk.  The problem was that they were attached to me via leash!  I yelled at them to sit before I got dragged down my own front steps and thankfully they remember that command and sat.  They did expect a biscuit for their trouble, but they'll get over that.  So I slowly got down the steps and we started up the sidewalk.

I'm already breathing hard at this point, but the dogs are going nice and slow.  For once I don't mind that they are stopping to sniff every tree, bush and leaf pile.  We get to the corner and cross the street.  I'm already sweating and have started to waddle from side to side a bit.  As we make our way up that block, I start to walk in a crooked line.  I looked like I had been drinking my breakfast...and not in a good way...

By the time we turned our final corner and headed (thankfully downhill) back to our house, I felt like I had run a marathon.  Erin and Alvin were pulling me along and I was glad they were.  All I wanted to do was get home and not keel over in a bush along the way.  I was still waddling, weaving, and sweating, but at this point I didn't care.  I just wanted to get home.  Going up the front steps was another slight ordeal.  Let's just say that Erin and Alvin will never qualify as sled dogs.

So what is the moral to my story?  I don't really know.  Maybe it's that the definition of "normal" changes depending on your circumstances.  Maybe it's that sometimes you have to start at the bottom and work your way up.  Or maybe it's that everyone should teach their dogs to carry them when necessary.  You all can decide.

Stairway to heaven...OK, just the second floor...

I am not one to shy away from a good workout.  I never would have thunk that a good workout now means getting up the stairs.  There is no longer any bounding in my climbing stairs.  No running, hopping, bouncing or speeding.  No hurtling, dashing, scurrying or zooming.  My legs are too weak from the Cushings and my left leg has a nerve controlling it that is learning how to work again.  So getting up the stairs is more of a hoisting process using the handrails (thank you Travis!).  I know the more I make the journey from the first floor to the second, or the second floor to the first (no hoisting, but much holding on and trying not to fall my way down) the better my recovery will be served.  But needing a nap after a few times up and down is nothing I ever expected.  Since I find it impossible to live solely on one floor (and seriously, how can you pick between the floor with the fridge and the one with the bed?) I will persevere.  Eventually there will be bounding instead of hoisting and I will not feel like climbing the stairs is a workout!

Just to update you, I am back on my Muffy as of yesterday.  The whole Adrenal Insufficiency scare was a false alarm.  All the tests show that my system is normal and stopping Muffy didn't make any difference in the way I was feeling.  So Muffy is agreeing with me and not causing any noticeable side effects.  I am taking antibiotics for the vicious, man-eating cold and I feel better already.  Hopefully I'll have more energy as the days go on.  After all, I gotta get up and down those stairs!

Two weeks and counting

The vicious, man-eating common cold is finally in retreat.  I'm still blowing my nose and coughing up phlegm, but not nearly as much as I was.  This is great news for me since obviously I have no patience for a runny nose and head full of phlegm.  Bad news for sales of Kleenex however...

Today marks two weeks being on Muffy. The study protocol requires certain blood tests and other things be done every two weeks.  In order to prevent me from having to go back to NIH every two weeks, they worked out what they need with my Endocrinologist here.  This is awesome for me since I'm all of 5 minutes from his office.  Not that I don't love my Gaggle at NIH, but let's face it - anyone who needs to travel at this time of year has to armour up before they leave the house.  And let's just say my armour retired when I did.  In addition to seeing my Dr. here every two weeks, I also am in communication with my Dr.'s in Bethesda via phone and e-mail.  All the attention and none of the hovering.  I love it.

Unfortunately we have hit our first speed bump in the Muffy parking lot.  I have not been feeling very well in a variety of ways not attributable to the vicious, man-eating common cold.  I could chalk up everything to some reason or other, and nothing really matched up with side effects I was supposed to be looking out for.  But I let the Gaggle know anyway.  I might be experiencing something called Adrenal Insufficiency (AI) where there are not enough adrenal hormones.  As I mentioned before, Muffy doesn't reduce my cortisol levels, it just blocks what the adrenal gland is producing.  If I have AI, it means that Muffy is blocking too much.  The fix will be a reduction in dose.  We should know tomorrow if AI is the culprit.  If the culprit isn't AI, then we have to fall back and regroup. 

Lesson for today: regulating the body's chemistry is not an exact science.  There is some trial and error that happens along the way because the body is such an amazingly complex piece of machinery.  I'm thinking we'll just work through this little hiccup and get me feeling more human in very short order.