Climb every mountain....

The hills are alive with the sound of Carol huffing and puffing...Isn't that how the song goes????

I made the comment several entries ago about how I wasn't going to be coming back from zero, I was going to be coming back from -100.  I didn't really know what that was going to mean to me physically, but I knew it wasn't going to be pretty.  And I was right, ugliness has ensued...

I'm alternating days with physical therapy exercises and cardio.  My muscles aren't sore, and I can do about an hour of cardio (made up of elliptical, bike and arms) at a shot.  But after I'm done with the exercising is when the true ugliness begins.  The physical therapy exercises aggravate my hip.  I'd be aggravated too if I hadn't been used, and didn't have connection through the nerve, forever and was all of a sudden asked to do workout stuff.  Yeah, I'd be pissed.  And my hip is.  After a great p/t workout, I have a hitch in my giddyup for the rest of the day.  And we know that I am also working to get rid of the hitch in my giddyup.  So I'm getting a temporary hitch to get rid of a permanent hitch.  Head exploding yet???

While the physical therapy exercises exhaust me and my limbs, at least I do them in the privacy of the therapy office or my own home.  My cardio ugliness takes place on a more public stage.  The gym.  My place of refuge is also my place of laughable movement.  I usually start on the elliptical for 10 minutes or so.  Then I hobble off of that, trying to get my legs under me without tipping over into the elliptical next to me or wandering into oncoming treadmills.  Then I go to the torso cardio machine where I can sit and pedal with my arms for 15 minutes.  By the time I'm done with that my legs have turned into lead and getting up takes two hands and a heavy dose of relief that this machine is bolted to the floor.  I attempt to walk around a bit and end up at the drinking fountain to refill my bottle.  I then hobble off to the bikes where I sit my ass down on a seat and start pedaling for 35 minutes or so.  Removing myself from the bike resembles more of a slither off the side and then, by any means necessary, I get myself into the locker room having made it through another day.

This is not hard work for me.  I love working out no matter how hard or just stupid looking it is.  But it's afterward, when the pain and aches set in, that I have a hard time.  While I'm working, I can forget how it feels.  There isn't pain, there is just achievement.  But afterwards when I ache to the very quick of my being, when every movement brings discomfort and laying on my back is the only position that is comfortable, I realize that this is what the -100 is.  It isn't sore muscles or physical exhaustion.  It's something completely different.  It's anguish.  That's the only way I can describe it.  It's nothing I've ever experienced in all the crazy workouts and events I've ever done.  It's -100.

This too shall pass.  My body will work it's way through it.  I can't go faster to get it over with, and I can't go slower to make it better.  It is what it is.  The important thing, the only thing, is to keep going. 

Ring-a-ding-ding...

I love my engagement/wedding rings.  I LOVE them.  They are the most beautiful things I've ever had and they are shiny and sparkly too!  I am lucky enough to have my (fabulous) husband's family like me and trust me with an heirloom piece of jewelry that I get to wear every day.  At least I used to be able to wear every day, but I'll get to that in a minute...

I also know that a ring does not a marriage make.  It's a thing.  A symbol of something bigger, but a thing none the less.  This is what I told Keith a while ago when he thought he lost his wedding ring.  It was a good speech - one of my best.  I said that it was just a thing.  Accidents happen.  It's not like he took off the ring at a bar because it would hinder his ability to pick up hot chicks and lost it.  He went out to retrace his dog walking steps in the middle of the night with a flashlight anyway.  Oh well, it still sounded good.  And the ring was eventually found in the sofa cushions so everything ended up ok.

Now I have to give the speech to myself and I'm not buying it.  I haven't been able to wear my real wedding/engagement rings for almost a year.  As Cushings brought on the weight I grew out of them and so they sit in my jewelry box.  I don't want to go without the obvious symbol that I am married.  I like being married and am fortunate to be married to the greatest guy in the whole world.  I want everyone to know it. When I could no longer get my rings on, I took it pretty hard.  It was just one more thing that this disease took away from me and that pissed me off.  Keith turned my own words back on me to make me feel better, but it didn't work.  I know that a ring is just a ring.  It doesn't make or break anything.  But because of Cushings I didn't look like myself, feel like myself, act like myself and now I didn't even have my "hi I'm Carol and I'm married" bling. Curses and double curses...

I ended up solving part of the problem by purchasing a CZ wedding set from overstock.com for $30.  The rings are not at all my style, but they are pretty and I get tons of compliments on them.  At least I was again labeled on sight as married.  But my real rings lay in my jewelry box unworn waiting for the day my Cushings would be gone and my fingers went back to their normal size.  And we all know how that went...

Well, I have good news.  We are almost there.  My finger is almost small enough to wear my rings comfortably and, more importantly, get them off.   So close.  Maybe a couple more weeks and I'll be sporting my bling and feeling like my old, married self again.  It's a small thing in the big scheme of being sick, but just another step closer to feeling "normal" again.

We have a winner!!!

< insert Rocky theme here...>

I spend alot of time here listing the things I either can't do or have to do because of Cushings.  Everything in my life just seems to revolve around being sick.  But today I thought I'd spend a little time and blog space on the things I can do.  I've been working hard in physical therapy and the gym, as well as doing my usual chores and errands.  Not to mention working part time at Brighton Gardens with my people!  My peeps!  It's about time I recognized the improvements I've made even if they are little baby steps...

Yesterday morning I climbed the stairs with a glass of water in one hand and a cup of coffee in the other, using both legs, not holding on to the handrail (because I don't have that coveted third arm), and I didn't spill a drop!!

The huge bras I bought to contain the girls as my weight climbed are now too big!  I even fit into one of my old bras from the very start of the weight gain!

I can ALMOST get my wedding ring on again.  Haven't been able to wear it for almost a year now, but I'm getting close.

I wore  a baseball cap the other day!  There for a while my face was so fat that I couldn't really get a cap to fit.  And if I did, let's just say it didn't showcase my "face" very well...

I wore a necklace the other day!  There for a while my neck was so huge my necklaces wouldn't fit.  I swear it's true.  So now I can get back to wearing my hip implant necklace that my awesome cousin-in-law Mike made me!

I tucked my shirt in!

I can get up out of chairs and off of toilets (and not just the "comfort height" styles) without pushing myself up.

My feet are back to their normal size and I can tie my running shoes!

I could follow all this with a bunch of minimizing statements, but I won't.  Today is about "winning" not "kind of winning...but...".  I am going to revel in my accomplishments no matter how small or how weird they are.

Maybe we should all do that today?

Live from the NIH

I can't figure out if it's cool, or really sad that most people on the 5NW wing of the NIH Clinical Center greet me by name when I turn up in their midst.  It's always nice to be remembered, especially when you're a long way from home, but maybe a hospital is not exactly where I should want to rack up the frequent stayer points.  Oh well, philosophical dilemma be damned.  It's like old home week when I come here and that's kind of nice.

Sadly this trip Casey, who I have cited in a prior blog post as the best nurse ever, is working the night shift.  You know how much I value my sleepy-bye time, so needless to say I haven't seen much of her.  But I vowed to stay up late tonight (10:30!) so that we can catch up when she gets here. 

My Cushing's friend Christy is here and we're wreaking havoc over 5NW.  She's been here for several weeks already and I think is going a little stir crazy.  We are venturing out into Bethesda for dinner tonight.  She wants to get me out of the building.  She thinks I spend too much time inside.  I have not yet mastered, as she has, the art of travelling with a jug full of pee so that I don't miss any "deposits".  It's easier for me to just stay here.  But I don't have to "collect" this evening so I am free to pee off site.  I'm like a kid on Christmas.  And by the way, for any tourists out there wanting to visit the Capital on your next trip to DC, please note that you cannot enter the building with food or water and will be made to dispose of them prior to being let in.  However, if you have an IV port in your arm, and a tote bag with a jug of your own pee in it, you're fine.  Just glide right through security...

I have been poked, prodded and probed during my short two day stay here.  I've been drained of my blood and pee, had my poop analyzed and chewed on a cotton ball in the middle of the night (it's an actual test....really!).  Most of the results are in and they look ok.  Some things are better (cholesterol and lipids) and some things not so much (blood sugar, iron).  I'm a bit anemic - that's new.  It's kind of hard to nail down exactly why, but until we solve that mystery I'll add some medication to take care of it.   We're going to up my dose of Muffy to see if we can get some better results and I'll return in April to go through this whole shootin' match again.  Trying to figure out the right dose of Muffy is tricky.  I need to take as much as possible, but not enough to send me into adrenal insufficiency which happened with the original dose I was on.  Sometimes, even with all the medical advances in the world, these things are done by trial and error.  And I trust no one to trial and error better than my gaggle of doctors.  They rock the endocrinology world.

All for now dear readers.  I must return to my room for (yet another) blood draw.  I hope I have enough left!

Oh village, my village...

I have often talked about my gaggle of doctors at the NIH, but I don't think I've given enough time to the Village it takes to keep me going here in KC.  Unfortunately one of my village people is leaving and I am feeling a little sad.

Back back back long long ago, I used to do triathlons.  I wasn't very good, but I loved doing them.  Or maybe I just liked training for them and would have felt like a fool without actually entering an event.  Either way, that's what my life before Cushing's revolved around.  And yes, Keith, the pups and working part time were all in there too.  But training was what I really loved to do for me and only me.  It was my time to forget about everything else. 

To keep this body of mine going, however, I needed a Village.  My Village included my trainer Jenn, my massage therapist Barb, and my chiropractor Jesse.  Between the three of them, I could keep going and reach all the fitness goals I wanted while still being able to walk and laugh.  Then I started having hip problems and Dr. Cook got added to the Village.  After hip replacement Jeanne the physical therapist got added to the Village and I recovered better and stronger than I was before the surgery. 

And then Cushing's hit.  When I stopped being able to work out with Jenn anymore, Jesse and Barb kept me going through the physical ups and downs of the Cushings.  They watched as my body deteriorated and my attitude changed.  They laughed, and sometimes cried, at the ups, downs, and craziness the last year brought me.  But they made my body feel better and kept me up right and moving.

Like all good disco groups, my Village was destined to have someone leave the band.  Jesse is the designated one.  He practices Active Release Chiropractic.  I don't know technically what that means, but I do know it helps my muscles, joints and everything in between feel better whether I've been working out like an animal, or laying on the couch wishing I could find the energy to get up.  It's time for him to move away and start a new chapter in his life and I am excited for him.  But my Village will be like a stool that has lost a leg.  He cannot be replaced.

Jesse being Jesse, would never leave his patients hanging, and has given us over to his associate whom he claims is just as capable.  I will hold judgement on that since this Luke person looks like he's 12 (more and more people look like that to me these days...), and probably doesn't have a good knowledge base in 1970's TV shows.  Besides, I'm prejudiced.  Luke (do you think he'd be offended if I called him Doogie Howser?) will have to prove himself to me not only as a chiropractor, but as a fellow dork.  Otherwise there is no way I can accept him into my Village.  I will keep you posted on how that turns out.

I am off tomorrow to the NIH for a brief stay for drug study protocol stuff.  2 full days of probing and prodding are scheduled and then I fly back on Friday. I am looking forward to seeing my Cushing's friend Christy, who is there on an extended stay monitoring an even newer drug treatment for her Cushing's than mine, and the best nurse ever Casey.   Much fun will be had by all.

She's baaaaaaack....

Back where?  Back to the gym!!  Woo-hoo! 

The gym has always been my haven.  My place to do things just for me.  To feel powerful and able.  To work hard enough to eat as many cookies as I want...guilt free.  So just getting back in the doors was a huge accomplishment for me.  I won't bore you with the gory details of my pride and self-confidence keeping me away.  I don't have clothes big enough to wear now.  And when I was at the gym last, even though it was almost a year ago, I was in great shape.  What would all the regulars think when I came in looking like Shrek?  And of course there was the fact that I was so weak and out of shape I didn't even know where to start.  All ridiculous reasons to stay away from my favorite place and doing my favorite thing once Muffy started giving me my energy back.  Did I mention I'm human? 

My physical therapist, in putting me on that cool recumbent stepper elliptical machine thingy, gave me the confidence and the motivation to go to the gym and start doing cardio.  Even if it's only for 10 minutes, at least I'll be back.  So last Friday, I hoisted all my courage and put on the only workout pants that fit, and drove to the gym.  I hopped on a bike (Well, not really hopped...more like hoisted myself...), set it at level 2 and started pedaling.  I made it for 30 minutes!  I would have done a happy dance, but my legs were a little wobbly.  It was all I could do to walk around until the control of said limbs came back.  Then I did my physical therapy exercises and called it a day.  My legs were so tired, but it felt great to be working them.

I've been back to the gym every day since, doing my 30 minutes of cardio and my exercises.  Hopefully soon my legs will be strong enough to not wobble afterwards!  But right now it's baby steps.  Not biting off too much, but still challenging myself.  It's going to be a very long road back to where I was physically pre-Cushings.  And I'm sure there will be mental and physical set backs along the way.  But at least I'm on the road.  In the slow lane, but on the road.