Catch up is not a condiment...

So I come back from the NIH with my usual renewed dedication to looking on the lucky side of life. To appreciate what I have and discount that which means nothing in the big scheme of life.  But how do you do that when everything around you screams to be cleaned up, organized, attended to, put on the to-do list, scratched off the to-do list, shopped for, greeted, thanked, tossed out, laundered, fluffed, folded, run or stopped.  How do you stop to smell the roses when that little voice in your head is yelling at you to fertilize, re-pot, trim, and deliver them to a sick friend in need instead?  Bottom line is that I've spent my time since my return from Bethesda endlessly trying to catch up on things that I didn't do while I was gone and that I probably don't need to do now that I'm back.  And yet, I persist...

I understand that it is much easier to let life sweep you along rather than fight the current for the things you think are important.  That's why we say we're too busy to exercise, or too tired to cook, or too old to sky dive.  You have to really make an effort to create the life you want and it's hard.  But I need to get back to reality here.  Life is short.  The good days that include happiness and joy are usually squashed in between those in which we are getting crapped on my some Universal irony that will only be fully understood and found amusing by us on our deathbed.  In the meantime, if the washing machine doesn't get it's monthly cleaning, the dog is late on his/her heartworm medication and the car windows are too dirty to see very well out of, so be it.  The world isn't going to end.  If you run out of hand soap at the kitchen sink, dish liquid will do.  And there is no crime to picking jeans up off the closet floor and wearing them to work...as long as they pass the smell test that is...

I look for your support by joining me in this endeavor.  Throw off the chains of convention and lighten up.  Disregard what you think the neighbors will say.  Stifle that voice in your head.  Laugh out loud at an inappropriate moment.  Wear slippers to the grocery store.  Most of all realize that the world won't end if you enjoy the moment instead of dissecting and sucking the life out of it.  Take it from me and appreciate how lucky you are every day and never, ever forget it.

I'll have a glass half empty...and make it a double...

So what does one do when one gets ejected from the NIH a week early and feels like an epic failure because the tiny little tumor residing somewhere in one's body refuses to come out and wave for the camera?  One wallows.  One wallows big and hard.  And then one gets back to life...

I'm not big on self pity.  Not that I don't feel like it sometimes.  But it really gets us no where.  It makes nothing better, solves no problems and likely makes us feel even worse about things than we were feeling before falling into a pit of darkness.  It's not only unproductive but detrimental for those of us who truly believe that a positive attitude largely contributes to the overall health of the human body.  And yet I have no problem with allowing for a short wallow period when life craps on you in such a pile that a bulldozer couldn't move the refuse.  The key is knowing that wallowing doesn't help in the big picture even though it is a great way to get out the feelings of frustration and disappointment that can be overwhelming every now and again.

My wallows are usually confined to a designated day that has been pre-announced and planned for.  Not a lot of planning is involved, but supplies must be laid in.  Pudding and cookies usually, but for tougher situations nachos and/or pizza may be required.  My chosen method of wallowing involves food, napping and snuggling with the pups.  But others may go a different way.  I've heard tell of crafty wallowers that immerse themselves in projects, cooking wallowers that create baked goods or new foreign dishes that their mate is "forced" to consume, and shopping wallowers that loose themselves in racks of hanging comfort.  Whichever way you choose to wallow, I'm all for it.  No excuses, no explanation.  Just a time to do what you like and what makes you feel good.  Something that you appreciate as a diversion while realizing it for what it is - a diversion from thinking about the really poopy situation you are finding yourself in.

I usually confine my wallows to a day.  After that, I pull my adult panties back up and get on with life.  Even though it has lots of warts and ugliness, it's my life.  The only one I'm allotted and the one I have the power to dictate.  I choose to remember that I am a lucky girl.  I choose to remember that lots of people are dealing with situations that are so much worse than mine.  I choose to remember that if I get mired down in negativity not only will life suck, but I will have given control of the only thing I have in this world over to circumstance.  And I will not do that.  If I need to consume pudding every now and again to maintain, so be it.

Wallow day was last Saturday.  Pudding was consumed....

To glow or not to glow...

What do you do when the best scanning technology coupled with the most toxic radioactive dyes cannot find a tumor?  You go home, of course...

I'm home from NIH a week early with mixed feelings.  I am of course glad to be home with our babies and sleeping in my own bed.  No one, especially a rut oriented control freak like me, likes being away from all things routine and familiar.  And living in a hospital for 2 weeks is never any fun no matter what condition you're in.  So yes, I'm very happy to be home.  But to receive that luxury means that I have to accept the flip side - we didn't find any hint of a tumor.

This is where there is disappointment.  But even that is mixed as well.  I didn't want to let myself believe that we would find my Cushing's tumor this trip.  I didn't want to get my hopes up.  But emotion sneaks in no matter how much the brain tells it to stay away and I'm disappointed that we didn't end this ordeal.  I'm frustrated that I have to keep going on every day taking medication and living in a body that is held together by chemistry and bailing wire.  I'm frustrated that Cushing's for me is an unending saga with no end in sight.  I plan, I figure, I foresee.  I do not "roll with it".  I am not one of those people.  I never have been and I am destined never to be despite the life lessons I am receiving right now. 

I'm also disappointed and frustrated that I'm disappointed and frustrated.  For someone with a chronic, rare and pretty catastrophic condition, I have the best doctors, access to an experimental medication that is working without destroying any of my other bodily functions, and a support system that keeps me going no matter what.  My life is very good.  And a trip to NIH reminds me just how good because I'm surrounded by people who are in very bad shape.  People who are dying or whose bodies are shutting down while I am bee-bopping from scan to scan, injection to injection.  I want to automatically feel lucky and blessed without having to think about it.  But I am human.  A fabulous, Princess-like human and it doesn't work that way. 

I must admit that a part of me is happy with the way the chips fell this time.  I didn't want to have yet another surgery.  I'm not ready to embark on another recovery process right now.  I'm finally feeling good after the surprise hip re-replacement of last summer and I don't want to have someone digging around my innards removing a microscopic tumor and spoiling it.  But in wanting that, I am dooming myself to continuing on the path I'm on - unknown.  In saving myself months of recovery, I'm giving myself months of medication, blood tests and longing for the body I used to have.

But now that I'm home, it's time to fall back in my routine and not think of another trip to NIH for a year.  I'll wallow for a day or so, then get back to the business of living remembering all those people who aren't as lucky as I am. 

It's like deja vu all over again...

Here I am back at the NIH one year after my last stay.  For the most part everything is the same.  Some of the faces have changed, some of the department locations have changed (construction everywhere in the scanning departments.  I have already walked into two walls where doorways used to be.), some of the procedures have changed.  But the routine is the same.  Medication, blood draws, fast/no fast, inject, scan, rescan, rescan again, eat, sleep, start the whole thing over again.  If I'm lucky I can squeeze in workout, a walk outside, go to patient library and maybe watch tv (they have cable here - a luxury we no longer have at home!).  Whatever it takes to not get bored out of my mind in between visits into the "tube".

You'd think that a visit here at the NIH would remind me just how sick I am; something I can easily forget these days.  Sure I have alarms of every kind going off every six hours plus at 3:30pm to take medications, but that's just become a part of the day.  I feel pretty good most of the time.  I am able to work again, I go to the gym, I eat what I want and basically don't have to worry about much of anything...except where my next dose of medication comes from (thank you NIH!).  Next to the other people who are patients here I feel and look healthy as a horse!  An uber fabulous horse, but giddyup none the less.  A stay here at the NIH instead of reminding me that Cushing's rules my life and I'm not the healthy person I look like on the outside, makes me feel a little guilty that I have it so good.  And really, don't we all need that perspective?

I have said it before and I'll say it yet again.  I am very lucky.  I have support and resources that most people don't have.  I also have a disease that most people don't have, but that's a whole other blog post.  For now, I appreciate what I do have.  Later comes later.