Thursday, December 26, 2013

HOLDING A GRUDGE vs. a game of TRUTH OR DARE

I saw this quote today:  "Holding a grudge is like letting someone live rent-free in your head." 

Quite honestly, I read it and passed right on without a second thought.  But, a few minutes later, something began to resonate from somewhere deep inside me and I went back to read it again.  And then, I read it and re-read it.  Slowly something like a chill took over me.  It began in my toes and I could feel the icy realization as it began to chill in my veins. 

I am holding the “mother” of all grudges! 

The truth - I go about my life as it is today letting Cushing’s Disease live rent free in my head.  The fact is, the first tumor that railroaded me was “in my head” and part deux is yet again, “living in my head.”  The irony is not lost on me.  But, irony aside, the fact remains, while I was not able to control whether or not I got Cushing’s, I am able to control whether or not I allow continue to allow Cushing’s to control my life and that re-gained control starts with:  The dare – letting go of the grudge. 

The question for me is I how do I let go?  How do I accept my losses?  How do I come to terms with the “can’ts?”  How do I live a life in a body that is foreign to me?  How to I reassess and figure out who I am when I can’t reconcile what I think with my reality?  How do I let go of the pain?  How do I accept this new truth?  Do I dare?

((((Big long, heavy sigh))))

If I was to be honest with myself, I would have to admit that I might in fact be attached to my grudge.  If I continue in this painful vein of honesty, I would have to admit that as much as I detest the weakness I embody as a result of Cushing’s, I have grown all too accustom to having the “excuse” to fall back on.  I might actually rely on the “out” that I have if I fail at something.  If I can’t keep up the pace on a hike, I can blame Cushing’s for the muscle fatigue and pain.  If my husband is disappointed and I feel guilty and end up crying, I can blame the Cushing’s for the emotional instability and tears. 

((((Cringe))))

If I am honest here, and accept the painful truth, the painful truth is that I have grown all too accustom to the grudge.  That is the truth – a truth that I cannot deny. 

Damn it!  What a realization. 

In the same vein of honesty, I will admit that when I started writing this, I didn’t anticipate this realization.  But, as it turns out, I created my own therapy session.  Interesting.  Turns out analyzing my grudge brought me to my truth.  The question now stands: 

“Do I have the strength and do I dare step away from the crutch of my illness to figure out and possibly redefine who I am today?” 


God help me...I just don't know.  

Sunday, December 8, 2013

LOVE THY SELF? I don't think it's possible for me right now!

I am not fond of pictures of myself.  Honestly, I've never been very photogenic.  I attended the "re-shoot" opportunity for all of my school photos.  I, without fail, looked like I was mad or more often then not, I looked like I was about to sneeze.  

Cushing's and the changes that I can't control added another toxic layer to me "photo-self-loathing" issues that I've nurtured all my life.  

That being said, can you imagine the angst and terror that I began to feel when my work recently announced that we would be doing head shots to up put up on our website?  

Being of a certain age, and more importantly, as a woman, (not to mention a self-proclaimed shutter bug) I have managed to figure out what angle, lighting, camera position, stance, color, etc. are most flattering in a photo-op.  So, I was clinging to a small snip-it of hope that I would be able to have a discussion with the photographer and manipulate the small things that I could to possibly - fingers crossed - get a shot that was at least decent.  

The photographer was very insistent on doing things "his" way and presenting "his vision" and so not only was I pissed off, but the photos were terrible.  

When the head shots arrived to the office, I opened them and gasped!  JABA THE HUT was the first thing that came to my mind.  I felt the heat rise in my cheeks and the sting of tears fill my eyes.  I couldn't even look at them.  I closed the window, took a deep breathe and tried to relax, but I felt like someone had slugged me in the gut.  There is something so humiliating to see yourself in a way that is so out of line with the image in your head.  I actually felt ill.  

I used to think that my insecurities were the result of a commercial society that presents unrealistic expectations of what is beautiful.  And while I think that plays a huge role in the way we measure ourselves and the perspective of beauty, the truth is, Cushing's is an ugly disease.  

It attacks our physical personas.  It changes the face and body that peers back at us in the mirror.  Then it takes away the ability to do anything about it with pain and countless physical limitations.  

Recently, my younger brother was looking through pictures with my mom.  He said, (without intended malice), "Wow!  Autumn used to be so pretty...and so skinny!"  

I don't have delusions about my physical changes.  I know I am not the person that I used to be.  I am all too aware of many physical things that I don't like about myself.  But you know what I hate the worst???  I hate that I have forgotten how to love myself for more than just what I look like on the outside. 

An honest assessment of human tendency tells us that we tend to be very influenced by the "candy shell."  The things we purchase, the places we go, the cars we drive, the houses we live in - they all initially appeal to us visually.  It isn't necessarily about persuasion to begin with.  It's about a quick initial response.  If I respond negatively - finding myself ugly, undesirable and repulsive - I am not naive enough to think that others don't make the same assessments and judgments.  And honestly, that hurts!  It cuts deep into my self worth and it leaves a cancerous knot of doubt and self-loathing.  

The question that I pose to myself is:  How can I love something about myself that I loathe so much? And heaven forbid I contemplate these thoughts when I have on a cortisol "high."  That is the perfect storm!  The spiral into despair is close to follow.  

I wish that I could close this particular entry with a personal "call to action" - something that I am going to work on - a goal - a positive plan to help myself....but I can't.  The typical cliche saying make me want to lash out.  "True beauty is on the inside."  BITE ME!    "If you feel beautiful you are."  F#$& OFF! 

This is my personal cross to bear right now in my life, but the problem is I don't know how to move forward.  I can't get over myself.  I can't think of a possible personal characteristic or charm that could battle and win this monster that has changed my physical appearance and left me feeling so terrible about myself.  

DAMN YOU CUSHING'S!  

Sunday, November 10, 2013

A Beacon Of Hope – Dr. Friedman’s Impromptu Visit to Denver


Exactly a week ago, I saw a post from a fellow Cushie that announced that Dr. Freidman was making an impromptu visit to Denver and would be hosting an open house at his sister’s house.  I am not one of his patients, but I knew that name and I immediately knew I HAD to go! 

There were a couple hiccups that had to be ironed out.  #1 – I was hosting a baby shower for a friend at the exact time the open house was to take place.  I hastily contacted my friend and all the attendees and was, by the grace of God, able to shuffle the baby shower so that I could attend the open house. 

The second obstacle came about the very morning I was going to attend the open house.  I woke up late, 15 minutes prior to when the open house was supposed to start, started feeling worse than I have in a long time.  I told my husband I couldn't do it and crawled back in bed.  A few minutes later my husband gently woke me and said, “This is important.  Rest for a few more minutes and then let’s go.” 

To be perfectly honestly, it pissed me off.  I knew he was right, but it hurt to move, let alone get ready and face a group of people and another Doctor to boot! 

Somehow I got dressed, (with only 2 major hissy fits) and was out the door in record time.  The drive there proved no less annoying.  My poor husband could drive right, people were upsetting me left and right and I had the overwhelming urge to burst into tears. 

Let me back track for a just a moment…

I have been living a pretty self-tumultuous few months.  (If I was totally honest, it’s been longer than that, but that is the nature of my life)  I got sick over Labor Day and things have been shaky since then, but I think that it was a pivotal point for me.  My job was stressing me out.  I was in tears almost every day at the thought of going in.  My body was forcing me to pay attention despite my argent efforts to avoid the obvious.    After almost 4 weeks of sinus infections, kidney stones, ear infections, bronchitis, the flu and pneumonia, I gave notice and walked away from my job.  That choice, while relieving, was not one that we could financially sustain for any amount of time.  SO, I pursued employment and started a new job two weeks ago.  It never fails that when you are feeling your weakest, other issues rear their heads and fester as well.  So I welcomed into the war I was waging, additional issues.  I was also planning and hosting a baby shower for a dear friend. 

Sadly, the baby shower in itself was an emotional typhoon that I had not thought through very well.  Let me clearly state that I don’t be-grudge anyone that brings a precious life into this world – Actually – if I am totally honest, that isn’t true either!  I do be-grudge crack-whores and people who neglect and abuse their children when I want so desperately to have a child and can’t.  However, my point here is that I am excited for others and due to my love of children and the very privilege of parenthood, I easily get caught up in the excitement and forget that my involvement is ultimately very painful for me.  But, that is a whole other session in a therapy chair for me….

So, here I am, totally overwhelmed with my life.  I feel like I am hanging on by a thread.  My capability to control my careening emotions is next to non-existent, I’m starting a new job, I’m feeling worse physically than I have in years and I have no choice to trudge forward.  I am back to simple existence.  I am waking to pain, taking pills, making it through the day at work, coming home and barely completing the minimum that I have to do to get by and then crawling back into bed as soon as I possibly can.  Things in my life are falling to the wayside and I can’t muster up the “give a damn” to try and keep it together.  All I am doing is taking pills to ease the pain as I force myself through the necessities, and then taking pills to help me sleep through the rest.  It is nothing more than an existence and yet I feel guilty complaining about my easy life compared to what others face.  I have a house and a car and a job…but I feel that the stress on the thin tread that I am hanging by is about to cause a huge SNAP that is doing to be devastating.  I am overwhelmed.

Now, back to this morning and the pending open house that Dr. Friedman is hosting…

We arrive, no thanks to me and my pathetic fits of rage, but on the wings of my husbands enduring patience and understanding to which there seems to be no end.  (God help him – he is a Saint!)

We were VERY late, but we were welcomed easily despite the fact that our arrival into the living room caused a weird diversion and interruption in the conversation.  Realizing that I am anxious and annoyed as the idea of yet another doctor scrutinizing me and judging me, I’m quite sure the vibe I was giving off was assaulting. 

The group seemed calm, welcoming and warm, but I was still on edge…uncomfortable in my own skin as is the norm lately.  As soon as there was a break in the conversation, Dr. Friedman asked me about my experience.  Now here is the part that is amazing.    Within moments of my arrival, without judgment, without test results, without medical charts, without anything but his experience, Dr. Friedman said that I undoubtedly had Cushing’s.  He asked about the size of my new tumor and said, as if it was no big deal, “That tumor needs to be removed.  I can help you. You need to come see me.”  Just like that…JUST LIKE THAT!  I was suddenly, without any pomp and circumstance, VALIDATED! 

It isn't that I don’t know that I have Cushing’s.  I've been through this before.  I've lived it.  I know what my body is telling me and I know that the doctors that I saw this spring were simply wrong, but I hadn't realized how traumatic the whole scenario has been for me.  It hadn't clicked in my head that I had easily slipped into the danger zone of self-doubt that I warn everyone else about. 

As I mentioned earlier, I was late….REALLY late…to this meeting, but the little time I was there was great.  I listened to others who faced the same terrors of being treated by the endocrine team at Denver’s Anchutz University Hospital teams.  I felt supported.  I felt like Dr. Friedman understood.  I felt like he could and would help me.  I felt like I wasn't alone.  I felt hopeful. 
 
As I stood to leave, I caught a glimpse of myself in a mirror that was hanging next to the door.  I was shocked.  I didn't recognize myself.  I saw my round, red, swollen face.  I saw the pain etched into the lines around my eyes.  I saw someone that I recognized, but it wasn't me.  I was propelled back to a day in the spring of 2005 before my first surgery.  I remember clearly standing in front of the mirror in my master bathroom and realizing I didn't know the person looking back at me.  But that same stranger is EXACTLY who I saw today. 

I have to admit, I was shocked.  I am not oblivious to the progressive changes in my health.  I know that I've been traveling down a slippery slope for some time.  I've been intentionally ignoring the signs and avoiding the truth.  But, today the truth of the matter all but slapped me in the face.  Fortunately, the visit with Dr. Friedman was validation that I needed to wake up and acknowledge what I've been denying because I was, without even realizing it, believing what the “bad doctors” were telling me. I not sick, I’m just fat.  I believed it….but why?

WHY?  Because it was easy.  That explanation is easy.  That explanation wasn't scary.  That explanation didn't require me to pull up my big girl panties and admit that I needed to take action.  But that is what I have to do. 

I've learned some things about myself along the way.  No one goes into battle and comes out the other side the same person.  This battle with Cushing’s has changed me.  I am a “live in the moment” kinda girl these days.  In all honesty, I've always had those tendencies, but Cushing’s has made them even more prevalent.  I know that my time in this lifetime is limited.  As a result, I don’t buy into the “planning for the future” philosophy…because I don’t know that I will ever get there.  What I do know is that I have TODAY…and I want to take advantage of what I do have. 

But here’s the thing…that thought process has made me neglect and put aside what I know I need to do.  I have avoided what I know…I HAVE CUSHING’S and I need to actively challenge this disease to have HOPE. 

And, after today, I do have hope.  I am hopeful that there are doctors out there that can help us.  I am hopeful that we all find the courage to live our lives.  I am hopeful that we all get the opportunity to remember that we are not wrong and that we do know our bodies better than anyone else.  I am hopeful that the medical community will become more aware and educated about Cushing’s.  I am hopeful that others will not suffer like so many of us do today. 

But most of all….I am hopeful that I can muster the courage to pursue help.  I am hopeful that Dr. Friedman can help me.  I am hopeful that I will feel better.  I am hopeful for my future. 


Wednesday, September 4, 2013

ADRENAL INSUFFICIENCY (AI) and AWARENESS!

I don't think we talk about AI (Adrenal Insufficiency) enough.  It is scary and it gets ignored all too often.  As for AWARENESS....the more the better, right?!?  A friend asked about an old note that I posted in 2012.  It is worth a moment:

Instituting Protocols for EMS to treat Adrenal Insufficiency and RAISING AWARENESS

July 16, 2012 - AWARENESS – I’ve come to realize in my journey with Cushing's Disease that this word can be the difference between life or death. 

My name is Autumn Boyet Stinton .  I am a Cushing's Disease survivor.  Although, I’m not sure this statement in itself accurately depicts my experience and who I am today as a result.  When people say that they are a survivor, it conjures up ideas in one’s mind that an individual has stared down their disease demons and come through the other side a winner.  But, if you talk to any Cushie (what we affectionately call ourselves) you may find we are a different kind of survivor.  For the majority of us, although we have survived a terrible ordeal in diagnosis, lost ourselves in bodies we don’t recognize, endured physical and emotional pain, not to mention an extensive laundry list of symptoms and treatment, it doesn’t end there.  Cushing's continues to haunt us. 

Post surgery, (pituitary adenoma removed in June of 2005), I was hopeful that I would have a cure and that I would miraculously begin returning to my life as I have envisioned it - free of pain and able to do the simple day-to-day things that so many people take for granted.  However, it simply didn’t work that way for me.  I still felt terrible and my recovery was anything but easy.  Before long, I was back at my Endocrinologist looking for answers.  After a plethora of tests and a few different medical opinions, it was determined that I had flip-flopped from the over production of cortisol with the Cushing's Disease to the under production of cortisol and Adrenal Insufficiency.  This brought me to a new level of risk.  Many of my body systems had been damaged by exposure to too much cortisol over the extensive period of time while I was mis-diagnosed over and over again with any list of ailments; PCOS, Hyperthyroidism, high cholesterol, migraines, acid reflux, fibromyalgia, chronic kidney stones, MS, asthma, Crones Disease…and the list went on and on.   My immune system was weak at best and completely unable to combat even the most benign of illnesses that came my way.  Suddenly, it was dangerous for me to be in public or around people as most anything made me sick.  Recovery and healing was an excruciating process that took an extensive amount of time.    

My Endocrinologist required I get a medical alert bracelet to help protect me if something happened, but I still didn’t understand the severity of the situation.  I was uneducated.  Looking back, the most frightening thing was that the very professionals I was relying on to save me in the event of an emergency, or a simple collapse of my body as a result of God knows what, they too were unaware of how severe my blight was.  I found that each time I ended up in the ER, I learned some other little tid-bit about my condition that seemed so simple and obvious, however I was just learning about it.  I picked up tricks and information as I went along, learning the hard way.

I still remember the first Google search I did about Cushing's Disease after my initial, cold, clinical diagnosis.  I walked out of the Doctors office with the word Cushing's written on my hand not having any idea what was wrong with me.  There was very little information out there about Cushing's at the time.  All I could find were articles about dogs and horses.  I was frantic and freaked out that I had somehow contracted an animal disease.  It was torture.  I needed support and help.  I had so many questions and no one to answer them.  I began to understand the importance of awareness on a level that I could have never grasped prior to this turn of events in my life.  I began searching for ways to raise awareness and offer support to others who might be facing what I had and continued to face.    

In 2007 I started a Facebook group called CUSHINGS DISEASE.  I named it simply in hopes that a simple search would provide quick results for anyone looking for others to connect with.  eight years later there are over 900 active members who grace the group with their input, empathy and support for each other.  And, there are many other similar groups out there.  I am proud to call all these fellow Cushies my friends and family. 

We find that we have very similar journeys.  We are afflicted by the same symptoms.  We endure the same tests, failures, disappointment and challenges.  We offer support, understanding and validation to each other that we receive nowhere else.  Again, I find it sobering to learn that many of us are better educated and able to offer suggestions to each other than the Doctors that treat us.  I believe it is simply a matter of awareness – or lack thereof!    

My journey with Cushing's is not over.  I have since my diagnosis with Adrenal Insufficiency, flip-flopped once again and the over production of cortisol has caused another tumor to grow on my pituitary, just to the left of where my first one was.  Additionally, I continue to have the chronic health problems that have plagued me all along this journey.  I have days that are fine.  And then I have days that the simple idea of brushing my teeth is more than I am physically able to cope with.  My cortisol levels rise and plummet, taking along with them for a rollercoaster ride, my health.  I am unable to cope with getting over-heated.  I have severe pain in my muscles.  I have incapacitating headaches.  I am plagued by brain fog.  I have issues digesting things.  Simply said:  I have issues!  BUT, I am alive and I will continue to fight! 

I have lost two friends in recent months who’s bodies simply gave out.  They were young, sick with Cushing's Disease and unaware of the dangers that become life threatening with Adrenal insufficiency.  Sick with everyday illnesses, their bodies simply gave out.  They were unaware of the dangers of AI and the people around them were unequipped to help them.   

My hope is that by telling my story, over and over again, people will become aware.  Maybe something I say or share with someone will raise a flag when someone else mentions something about what they are going through.  Maybe, telling my story to everyone that will listen will make it evident to the medical community that we need training and education to help save our lives! 

 Autumn Boyet-Stinton

Tuesday, August 20, 2013

CAN'T...CAN'T...CAN'T...Is this my destiny with Cushing's?

August 20, 2013

As I type those words, my mom’s cheery sing-song voice comes to mind and I can actually hear her say, “Can’t never could do!”  I can’t help but smile a little despite myself.  I believed her.  I knew that I could…if I wanted…do ANYTHING.  I knew that my future was limitless.

Inexperience and childlike naivety is glorious to those of us who may now know too much.  We know too much about pain.  We know too much about disappointment.  We know too much about loss.  We know too much about what we CAN’T have….what we CAN’T do….what we CAN’T change. 

No matter how I endeavor to stay positive and focus on what I have to be grateful for, there is forever a voice in the dark corners of my mind that feeds on my resentment.  It hovers and lingers in the darkness that I push it into waiting for a chink in my armor of hope to creep out of the shadows and wrap its arms of sadness around me.  It offers me weighted shoes of gloom that weigh me down and prevent any forward motion.  It is dangerous because it looms large just out of my line of sight and swoops in when I am at my weakest.  That nasty little voice whispers that I have every right to be sad, angry and hurt.  It coos to me and says it is ok to give up – who wouldn't given the same trying circumstance that I have been given.  It offers me excuses and pity and welcomes me with open arms in to its lair. 

But here’s the thing…somehow the “light” of life is more powerful.  It isn't that I don’t have an ongoing mental list of the injustices that I continue to stack up on a daily basis – because trust me – I DO!  And the list is extensive – but I digress!    

The thing that I wanted to write about is that despite being keenly aware of my limitations, I am learning that I don’t have to simply give up on the things that I want to do…I just have to RE-ADJUST the way that I think about doing them.  Don’t get me wrong, it doesn't work with everything on the list, but it can work.  Let me give you some examples:

1.       In March my husband and I visited Key West for the first time.  It was beautiful and we wanted to walk and explore the whole town.  My physical limitations became evident quickly and I was almost in tears as I realized that I couldn't do it.  After a few blocks I was in pain and ready to quit.  I was disappointed in myself and what I was missing out on and I was wracked with guilt for potentially denying my husband the experience.  THE RE-ADJUSTMENT:  We rented scooters and took Key West by scooter!  Not the way I planned or wanted, but I didn't end up back in the hotel in bed!  It took a failure and made it successful with a bit of an adjustment and a little understanding for myself. 




2.      More recently, my husband invited me to go back-packing with him.  I was raised in Colorado and love all the outdoor things that make living here so great.  Skiing, Camping, Hiking, Biking, 4-Wheeling…you name the activity – it was simply part of who I was and therefore a major part of who I am.  Cushing’s made so many of those things impossible.  So, when my husband talked about me joining him for the weekend, I was thrilled and deflated at the same time.  I knew that I simply couldn't physically do it.  A 4 mile hike in, carrying everything and then not having any of the “comforts” that make my pain tolerable for 3 days…it just isn’t possible.  As a matter of fact, it would be dangerous and stupid.  THE RE-ADJUSTMENT:  We simplified, and went for only one night.  We chose a short and moderate 2 mile hike that wouldn't (so we thought) be so bad.  As it turned out, the first ½ mile was a pretty brutal increase in elevation.  After 30 minutes I was in tears and certain I had made a terrible choice.  RE-ADJUSTMENT #2:  We slowed down and took it step by step and stopped frequently – which resulted in us seeing some pretty spectacular things!  AND we made it to the camp and enjoyed the weekend.  


  
So, what I hope someone might take from my ranting is the understanding that we may have to accept the “CAN’Ts of CUSHING'S” in our lives as our reality.  It is what it is.  BUT, we can READJUST our thinking to accommodate the limitations and find compromises that may actually still allow us to participate in life in a manner that is comparable to our ideal. 

I believe that Cushing’s has given me something that I would have otherwise missed in life.  I have an appreciation for good.  I face pain, depression, inadequacy, fear and frustration on a daily basis.  I look those negative things in the face and I feel them.  But as a result I am so grateful for the good…sometimes small, even minute, but GOOD and worth being grateful for non-the-less! 

So here’s to accepting the bad and being that much more grateful for the good.  Here’s to learning and growing and constantly RE-ADJUSTING!  

Wednesday, May 29, 2013

Letting Go - What does that mean for me today?

I found that the diagnosis, (medical validation that I was not crazy) made a huge difference in that I was able to LET GO of some of the stress that I was carrying, in that, despite knowing that I was not "faking" or "crazy" - you can't help but start to question yourself at some point after a while. 

BUT, the diagnosis let me breathe a sigh of relief...and as we all know, the less stress the better! I was still confronted with people who didn't get it and didn't want to get it. However, it was easier for me to cope with that when I had answers. Don't get me wrong, it still stung when people ignored what I was going through. It still does today. 

Sadly, it does define friendships, but as I carry on in life, I'm learning where and to whom I should expend my limited and precious energy. Some people have made that choice for me, and I just have to LET GO. 

LETTING GO is a constant lesson for me, but here's what I've learned / am learning about LETTING GO:


LETTING GO of the things that I can't control = less stress.
Less stress = less pain.
Less pain = better days.
Better days = quality of life.
Quality of life = happiness.
Happiness = everything.

When Others Don't or Won't Understand

I talk about this a lot, because it is a huge part of this battle.  From the doctors that we seek medical attention from, to the friends that we rely on or even the family that we naively expect understanding from -  it doesn't matter who - it could even be the random stranger who casts a disapproving glance our way - It hurts when we find out that someone doesn't care enough to at least attempt to understand. 

The hurt is bitter.  It cuts deep.  Maybe it is because we are already fighting an internal battle with ourselves, or maybe it is hormones, or maybe it is the fact that we personally don't think we would do the same to someone we love, or maybe it is a combination of all those things.  The simple trust is that it can be so hurtful when people don't understand, or even try to understand. 

Cushing's can be a big challenge on many levels. Not only are we battling our bodies, but we are battling a medical community that is just as confused as we are. 

So far, I've learned a lot on my journey.  I am still learning on a daily basis. I have learned that I am responsible for my own health advocacy and sadly, I've learned who my friends really are. I try to remember that it is difficult to understand things we haven't experienced, so I attempt to give my loved ones some slack, and most of all, I cut myself and my body some slack!  

In my personal experience, I went from being a very out going extrovert, to more of an introvert. The blessing in this change is that I'm learning to tap into a self-generated inner peace and I've gotten familiar with who I really am - not just the physical me - the inner person. 

If I am honest - I would have to admit it is all too easy to fall victim to wondering what I did to deserve this. I've also tried to soothe the emotional pain by telling myself that things happen for a reason. But, I have found that the "warm fuzzy" feeling that those cliché statements give me don't last or offer any long-term solace. 

The truth of the matter is, this sucks. Cushing's is life altering and honestly, NOT for the better. I am not being punished, it isn't fate, it just "is." It is my reality. I can't wish it away and unlike what a friend once told me, I can't simply state an intention and decide to not be sick anymore.  it doesn't work like that.  (And to be honest - I've tried that too!) 

Cushing's is a part of my life.  That doesn't mean I have to be happy about it. It most certainly doesn't mean it is an easy journey. And I don't know about you all, but I don't want to hear that "God only gives us what we can handle," or "it builds character," or "You will be stronger for it." None of that makes me feel any better. CUSHING'S SUCKS! Plain and simple. 

What I can tell you is that I have found strength I didn't know I had, I know myself better than most people know themselves - out of necessity.  I've also learned the importance of a support group of people that have traveled this journey and do understand.  Cushing's has taken a lot from me, but it has connected me with a group of people that are some of the most amazingly caring, kind, giving and empathetic humans I have ever met. I am grateful for the gift of my fellow Cushies. Their support and caring make this journey a bit easier. I would wish this on no one....but I am grateful that I can connect to others who do understand. 

Friday, May 17, 2013

Pulling Myself Up by my Frayed and Wornout Bootstraps


May 17, 2013

As if the physical symptoms of Cushing’s aren’t bad enough, I have to deal with the emotional trauma of a changing body and altered self-image.  If the endless, stressful and sometimes painful tests aren’t too much to cope with, I have to learn to defuse disapproving and judging glances of almost everyone who lays eyes upon me.  As if the heart-break isn’t severe enough that many of my so-called friends as well as family chose to ignore my suffering or go so far as to make repeated insensitive comments, I must also endure the agony in knowing that the medical professionals I seek and pay for help will also fail me.  As if the quest for better health and answers wasn’t sufficient agony, I have to learn how to cope with the over-sensitive egos of physicians who when stumped, are eager to judge and place the blame of my health issues back on me as a simple over-eating weight problem.

 I get it.  America is fat.  I’ve heard.  I know that fast food, saturated fat, high fructose corn syrup and over-indulgence are a way of life in America.  That doesn’t however give anyone, especially a medical professional, the right to make assumptions.  However, if you are so lacking in character that you make that mistake, I will still forgive you that human tendency.  As a matter of fact, I will patiently offer a dignified and honest reply to your probing questions about my dietary habits and caloric intake.  I will even relent and agreeably chart my food intake for you, noting everything that I consume down to the last ounce of water.  I will however, not forgive your ignorance and bullying when upon review of said food journal, you scoff at me and accuse me of lying.  I will not stand idly by with my head hung in shame as you attempt to belittle and brow beat me into admitting some wrong or deception that you are certain I have committed because you are unable to fit me into a text book mold of what Cushing’s “typically” looks like.  Shame on you and your eye-rolling, self-absorbed arrogance! 

 I am not sitting in this “couture” hospital gown with my ass hanging out, reveling in your contempt of my fat.  Trust me when I say, I have enough contempt for my body and the limitations it presents in the life I desire to lead.  I did not decide to spend every spare dime, and put my household in debt simply because I had spare time that I wanted to waste submitting to a plethora of tests, many humiliating in nature, instead of hiking with my husband, visiting my friends, or spending time doing something I enjoy - like painting.  In case you were wondering, I didn’t wake up one morning and think to myself, “I would really enjoy being ridiculed and belittled by a complete stranger.  And better yet, I would absolutely love to pay them large amounts of money to do so!”    

 DEEEEEEEP BREATH….

 Let me back track for a moment.  I am a Cushing’s Disease survivor.  I use that statement exactly as it is defined.  I am surviving.  I am not living as imagined I would.  My life is limited.  My goals are altered.  But I am surviving.  Somehow. 

 I was finally diagnosed with a pituitary adenoma in May of 2005.  Cushing’s   I had survived a 2 year battle of rapidly declining health that almost ended in tragedy.  My body systems were finally giving out and shutting down.  That was my saving grace.  Without this severity of reaction, I can only imagine that my declining health and quest for answers would have gone on without resolution.  But I was lucky.  I got a diagnosis and had my tumor removed within 30 days of the diagnosis as a result of my declined health.  I was 30. 

I was hopeful that my recovery would be quick and that I would be able to resume my life where I left off.  It didn’t really work out like that.  I faced a plethora of residual health issues as a result of the trauma that my body had endured while searching for answers and an initial diagnosis.  But, life goes on and I must admit that I tend to follow the school of thought that things happen for a reason. 

 The reason I latched onto was that I was meant to help raise awareness for this rare disease.  I was meant to offer a shoulder to others who were in need of support in their own quests for answers.  I decided that my personal heart-ache and losses (not being able to have children being a huge obstacle in my life - amongst other life altering factors) could be used to help others.  I wanted to make a difference in some small way this world, (who of us doesn’t?) and while it wasn’t what I envisioned, it was the hand I had been dealt, and so it would be.  I was resolved to that. 

 Living through the Cushing’s diagnosis process is one of the most daunting, terrifying, wearisome, traumatic, self-Ioathing, infuriating processes that anyone could ever imagine.  It isn’t like Cancer.  There isn’t a definitive test.  There isn’t a mutated cell to take a picture of.  There isn’t a foundation set up to educate and advance the research of diagnosis, treatment, recovery and prevention.  It is one of the most difficult things that many of us will ever endure in our lives.  Unless you are living it or have lived it, you have no idea.  I can think of many things in my life that have been life altering; the death of my father, the 5 kidney stones that required hospitalization, the brain surgery I had to remove the tumor on my pituitary, and the list goes on.  But, the diagnosis of Cushing’s Disease was by far the most traumatic thing I’ve ever endured.  But I did.  I came out on the other side.  I was vindicated, (if you can call the diagnosis of a rare, life altering disease vindication).  I finally had my answers and would never have to face the daunting task of insecurity or self-doubt again.  Or would I? 

 Eight years later, oddly enough almost to the day, I was back in a doctor’s office with my ass hanging out of yet another well-crafted couture examination gown.  But, I had a sense of ease because despite the ugly symptoms that were wreaking havoc in my life, I was a Cushing’s survivor and I knew what was going on this time around.  There was an MRI with a photo of the tumor.  There was a medical history that clearly mapped the ground we had already covered.  While not ideal in my life plan, I was feeling an ease that this process would not be the struggle that it was previously.  How could it even compare?  We were educated about Cushing’s.  I had lived the life.  I was my own text book.  I preach being your own health advocate and I felt as though I was doing just that.  I was engaged in conversation with an Endocrinologist who was engaged and earnestly listening to me.  My type A record keeping was proving to be a big help as my medical history is extensive and this Physician was new since my recent move out of state.    I was feeling fairly confident – despite my bare backside catching a draft in my gorgeous gown.

 My initial visit went well.  I felt as though I was heard, and my concerns were acknowledged.  A plan of action for extensive testing, some of which were at my request, was put into place.  Over the next 3 weeks, I was subjected to the full gamut of tests raging from blood panels to an MRI to take a new picture of the slightly larger tumor that was sitting on my pituitary.  Despite my failing health during this time, I reminded myself to don my big girl panties and push through the pain as the light at the tunnel was close at hand.  Just as I reached the light and as certain as it was, so too was the certainty of the train barreling down on me. 

Yesterday, that train hit me dead on and derailed me. 

 I arrived to my consultation follow up appointment yesterday eager to discuss a plan of action.  I have been feeling so terrible for so long, that I was ready to feel better and I was mentally prepared for whatever proposed plan of action was determined would help me. 

 The arrival of an unfamiliar face in the consultation room threw me.  I was circling back in my mind to take in what was happening as this new physician asked who I was and why I was there.  I was having trouble focusing on her face and big red flags began to fly in all directions.  Her questions were barely audible over the angry, stuttering in my head that kept repeating, “What the…. What the?!?  WHAT THE?!?  at an alarming increase in internal volume.  I was ill prepared for the barrage of questions that she had about my medical history and why I was there.  I leaned my head back for a moment and closed my eyes in an attempt to cease the spinning of the room.  With a concerted effort, I drew in a long breath and without taking into consideration what she was rambling on about, I said in barely a squeak, “I’m sorry to interrupt, but I’ve already been through all this with my doctor during my initial visit.  I spend close to two hours with him.  I am just here for a follow up consultation after all the tests that were done.  Where is my doctor?”   

In complete disregard of my inquiry, she cocked her head to the side, studied me for a moment and said, “Well what exactly did he say he thought was wrong when you saw him?”  I was able to keep my composure long enough to reply that I honestly didn’t remember exactly what he said when I saw him, but it was not a matter of figuring out what was wrong as I already had a diagnosis and treatment history. 

 These words were lost to the air above.  They hung in the room as she began to audibly review my digital chart in the computer asking questions about my history in rapid fire.  I again struggled to regain my composure and bluntly stated, “I’m sorry, I didn’t bring my medical history binder with me this time as we reviewed it in detail and the Doctor took copies last time I was here.”  Again, she stopped and contemplated me, giving me a head-to-toe glance, (you know the one I’m referring to!).   She cocked her head to the left, placed her hands in her lap and adapted that look of condescension before spilling adding this question to heavy, ever hanging words that were already glowering down at us from the air above:  “What exactly are the symptoms that have brought you in today?” 

In the midst of every alarm that was ringing in my head, while feeling the hair on the back of my neck bristle, the ever-growing knot in my stomach turned to a cement brick that with its solid landing in the pit of my stomach, brought the realization of the impending outcome.  The room stilled and I carefully detailed a quick yet extensive list of my most prominent concerns.  She continued to gaze at me as if contemplating what to say next.  But, I already knew the words that were coming before she formed them on her lips. My head hushed, the air in the room seemed to disappear and suddenly I was watching from the above.  I watched in horror as the me on the examination table collapsed ever so slightly under her glower.  I watched from above and brought my hands to my mouth and whispered, “nooo!”  as I saw the grip of  self-doubt and self-loathing reach out and twist it’s hands around the me on the examination table.  I watched from above and winced as I saw the pain cross the face and radiate through the me on the examination table.  I watched from above and heard the almost inaudible catch of breath from the me on the examination table as I waited for the inevitable words that I knew were coming.  I screamed from my perch above as if my pleadings could stop the words that were already rolling off the doctor’s lips, but it was to no avail.  From above, I turned to face the me on the examination table and I begged that she not hear the words that were coming.  I beseeched myself to simply stand up and walk out, but I was locked in place, just as a target that has a missile lock.  From above I slouched to my knees, hung my head, and wept, waiting with baited breath for the impending.  And suddenly, there they were - the tone robust with condescension and judgment.  The words were icy, pungent and cut through the room, ringing clear as a gunshot: 

“Let’s be honest about those symptoms.  You don’t have Cushing’s.  You’re fat.”

From that point on, I don’t need to detail the questions or conversation that ensued. It is all too familiar territory for anyone afflicted by Cushing’s disease.  You know that pain.  Most likely, simply reading these words has conjured up an emotional torrent within you as you have lived this experience in some manner yourself.  Needless to say, I was wounded.  No.  I was devastated.  I was in disbelief that I had, despite what I had endured to date, found myself back at square 1.  Admittedly, I cursed when I woke up this morning, realizing the easy way out would have been to simply not wake.  I feel desperate.  I once again feel lost.  I am, most obviously having trouble wrapping my head around these events. 

 However, what I want to put out there, what I want to emphasize about this experience is this:  It doesn’t matter if you are looking for answers for the first time, or are a previously diagnosed patient with another tumor, Cushing’s is not a simple battle.  It is a war - a war we have to individually wage against a variety of forces.  One battle may be our family, another might be those whom we thought were friends, and yet another battle will most certainly be the very medical professionals that we look to for help.  We will be wounded.  Scars will remain.  But, it is the way that we cope with the onslaught of trauma that defines us – NOT THE DISEASE.  I am not Cushing’s.  I am Autumn.  I will pull myself up by these tattered, frayed and worn out bootstraps...and I will survive. 

Tuesday, April 16, 2013

A Question Posed -

Today I received a personal message from a fellow Cushie who asked me an interesting question:

"I was just wondering if you think that Cushing's Disease changes who you was as a person - personality wise - coming out totally different - and not for the better either?"


Here was my reply: 

Wow! That is a loaded question - but the simple answer for me is 'YES.' Let me try to explain. I hope I can articulate this in a way that makes sense.

I am a totally different person than I was and the part that is the most difficult for me is that I am also a completely different person from who I thought I would be.

Don't get me wrong. I understand that people change as they get older. I understand that life changes people and their perspectives as well. But, I feel, for me, that it is different. I am of the personal opinion that life and life experience adds character to the personality off a person. And life changes people, it is usually for the better.
 
However, I falter when I take into consideration of myself and the changes in who I am as a result of having Cushing's. I don't feel like it has enhanced the person that I am. I don't feel that it has given my personality quirks that could be considered character. I feel that Cushing's has brought to the forefront and developed in me some personality characteristics/demons that I would otherwise have not faced. And of course, when standing face to face or shoulder to shoulder with demons, it only makes sense to me that some of the ugliness rubs off onto someone. Don't get me wrong - I'm not trying to justify the "ugly." I just think I have to recognize and admit that it is there.

When I look at who I am today, I undoubtedly see strength. But I also see rough edges and hardness, too. I see tattered raged edges that can no longer be smoothed out. I see someone who is, plain and simple, lacking in patience, empathy and compassion. I see someone who gets frustrated easily, doesn't put up with much and who simply doesn't want to bother herself with putting out the effort when I know there will be nothing in return. Shoot - Sometimes, I don't put myself out there or invest time and energy when I know there would be return...and the only reason I can conjure is I simply don't want to or don't care.

The worst part, as I mentioned, is that I see these things about myself and I don't like them, but I don't want to or simply can't find it in myself to want to change.

Cushing's is a funny thing. For most of us, it attacks us and steals our lives away. It attacks our physical bodies and then deprives us of the hormones that we need to repair our self esteem and balance our emotions. Cushing's is pure evil.

There are bits, of what I consider my eternal soul, that sometimes peek though the sludge that is Cushing's in my life. These slivers of who I was, are strongly rooted in optimism. While they are minute fragments of what once was, they are strong. Somehow they keep me tethered to the last little bits of who I was - of who I thought I would be in life. I do believe that is where my strength to go on comes from. I know that my hope springs from that part of my soul. I rely on those little fragments to keep me going. It is like a little glimpse of 'me' that I treasure. At the same time, that little glimpse angers me, because I can't imagine the amazing person I could have been if my destiny would not have been Cushing's.

All that being said, I like to think that I am supposed to learn something from all this. Maybe it is just a delusion that I like to indulge, but I like to believe that I still have the opportunity to grow from this - if only I can figure out how. And so, the torture continues.

My fear in all this is that I will alienate all those who I love as a result of simply being an ugly person in the meantime. I would be devastated to lose my husband. He is so important to me and yet I worry about him just giving up and walking away from all this crap. And the worst part about that is that I wouldn't blame him. For goodness sake, I want to simply walk away from this misery EVERY day of my life!

So, that was a bit a rant.

HOW ABOUT YOU? 

Sunday, April 14, 2013

I'm Verklempt - I Need a Moment


My health has recently taken a severe change - for the worse.  I'm sure the change in pace (a recent 17 day business trip to Florida following a very stressful time at work) didn't help, but in all honesty – it has been coming – like a freight train barreling down the track that I refused to acknowledge.  Avoidance = non-existence, right? 

Somehow I have been getting by with that sentiment.  Or at least I am getting very good at deluding myself into believing that.  It seems however, that I am really having problems getting back on track.  Not only am I facing some severe physical symptoms, but, typical of a Cushie on a hormonal tirade, I am unable to keep my emotional self in check.  I am all over the map.  “From Exasperation to Tears And Back Again In 6 Seconds” (That would make a great book title!) 

I know my immune system was/is weak, and I've been ignoring so many health issues for far too long. And so, the question that inevitably arises is - WHY?  Why would someone, (me), who advocates awareness, not giving up, etc. practice avoidance? 

Under some examination the answer seems pretty simple - Selfishness.   I have simply been selfish.  I want to do what I want to do.  I want to live a life that "I" control - not an illness.  I want to go and do freely and not think about pain, pills, tests, doctor visits, insurance, payflex, out of pocket expenses, diagnosis, bad days, terrible pictures, etc.  I refused to focus on the so many things that I couldn’t/can't do. – So many things that I feel have been stolen from me. – So many "can'ts"…so many "if onlys"...so many "What did I do to deserve this?...and whatever it was - God, I'm so very sorry!"  I've turned my back on all of it because I simply - selfishly - was flipping my reality the proverbial bird - Sticking out my tongue (if you will) and yelling, "You can't make me!"  

I've become masterful at this avoidance game.  I am queen of my pretend “Everything is Okay” world.  In this pretend world, it isn’t fatigue and muscle pain that made me avoid skiing this season – It was time and money.  Oddly enough there was time and money for my husband to go.  In this pretend world, it isn’t a deficient immune system that has made me susceptible to illness after illness over the past year – It was all the sick people around me.  Oddly enough there has been no epidemic outbreak in my area.  In this pretend world, it isn’t hormones that have prevented us from having children – It was just not “meant to be.”  Oddly enough this cliché answer simply doesn’t sit well with me.  In this pretend world, it isn’t my body attacking itself and deteriorating muscles that end hikes in the mountains or strolls on the beaches of Miami – It was just the fact that I my week had been hectic and I needed to rest.  In this pretend world, it isn’t brain fog or migraines that have zapped my creative inspiration in painting and photography causing me to cancel my first ever public art show – It was just lack of time.  In this pretend world I didn't have to face the real issues.  There was always an excuse and somehow the monster that is Cushing’s had been willing to lie in the corner. 

But here’s the crazy thing about monsters in the corner.  They aren’t really docile.  They aren’t really contained.  They are simply “lying in wait” and at some point, they will require…no…they will demand your attention. 

Now, I am finding myself in a position of duress.  My monster has risen and has in turn, backed me into a corner and is demanding my attention.   

The worst part about this is the guilt that comes with this realization.  Yes, it is my fault.  My weakness and desire to just have some symbolism of normalcy has clouded my sensibility for quite some time.  Sadly, that means that I have not only found myself in the midst of some dire symptoms while visiting the depths of despair, but I have drug my husband down with me.  As much as I feel punished, I realize that I have punished him so much more severely.  I have, by means of my selfishness, and pushing the limits so much further than I should have, I have forced him into a place of uncertainty and anguish while he watches me face the consequences of my selfish action. 
 
Selfish Bitch! 

Saturday, April 13, 2013

Cushing's Awareness Day - April 8, 2013

April 8th  – National Cushing’s Awareness Day 2013

 Well, my day didn’t turn out exactly as I had envisioned.  You would think that I would be totally used to that by now in my life.  I mean, seriously – I can’t really think of any examples of things that have gone as I expected in the past 10 years.

 As some of you know, I’ve been putting off seeing a new Endocrinologist here in Denver.  I’ve been here for two years, and I’ve neglected my health.  I don’t have a good reason for procrastinating.  I knew I had another tumor when we moved here and I knew I needed to find a new health care provider – I just didn’t.  My health has been slipping and I’ve had 100 reasons to go, but I simply didn’t want to do it.   I didn’t want to be consumed with feeling bad.  I didn’t want to be consumed with medications.  I didn’t want to be consumed with all the tests that, no doubt, were going to have to happen again.  I didn’t want to explain my story to another Doctor that might or might not get it.  I didn’t want to think about another surgery.  I didn’t want to think about Cushing’s.  It was making my sick…LITERALLY!
 
I wanted to have a normal life.  I wanted to think about anything but being sick.  But the reality of it is, this Disease will not be ignored.  The longer I waited, the worse the symptoms got.  The longer I waited, the more prevalent the symptoms have become.  I can see and feel the damage I’ve been doing to my body.  But do you want to know what the worst part was?  I was doing exactly what I encourage others NOT to do.  I was giving up and that is simply not an option when facing Cushing’s Disease.

And so, today was my appointment to meet a new possible care provider.  The irony of the fact that today is National Cushing’s Awareness Day was not lost on me.  Needless to say, caring for myself was not what I wanted to be doing.  I wanted to be talking to the Media.  I wanted to be passing out flyers.  I wanted to charge up mountains in the name of Cushing’s Disease and plant a Yellow and Blue flag in the name of Awareness!  But, that is not what my day was about.

 
Despite our plans, my husband was unable to accompany me to the visit – which was a devastating blow to me.  I’ve come to rely on him so much.  So that was strike one…and that strike was almost enough to make me cancel all together.

Then, this morning I woke to severe pain.  I couldn’t hold my arms up enough to brush my teeth.  I had searing pain on the left side of my chest that brought me to tears multiple times.  I wasn’t sure I could even drive.  As a result I was late.

Despite my anxiety, the appointment went well.  I feel good about the level of care that I am hopeful I will receive.  I was there for 2 hours while they asked questions and took time to really learn about me.  I left with a plan of treatment that begins with quite a few tests.

So, after 6 vials of blood I returned to the valet to get my car.  Upon my arrival, the woman looked at me and said, “Oh, let me get my supervisor.”  (little voice in my head – “$hit!  What now?!?”)  It turned out I had a flat fire.  Not just low…FLAT!  The valet supervisor offered to use his personal air compressor to blow it up so I could at least get to a tire store.  He returned and plugged it in to the power source of the car and it started for a second, and then nothing.  I remembered that I had one in my trunk. (A brand new one that I got as a gift.)  So, we tried that one, but it didn’t work either!  So we plugged it into the car next to me and…IT WORKED!  I was happy, but I realized that meant that there was something wrong with my car.  (argh!)  …But I digress.  So, I carefully and slowly drove to Discount Tire and they fixed my tire that apparently had a drill bit in it.  Keep in mind, I was supposed to actually go into work after the appointment.  Needless to say, that didn’t happen and I had to call my boss and tell her I wasn’t going to make it.

I then took the car to the dealer to see what was wrong with it.  They gave me the run-around, (go figure) and totally stressed me out.  FINALLY, I was headed home - desperate to sit down and still in pain.  However, upon my arrival, I found that my dog had been sick and so I spent another 2 hours cleaning carpets.

So, I was sitting here feeling defeated.  Today I have had to face a reoccurrence of Cushing’s, pain, frustration, a disgusting mess and to top it all off, I did nothing to raise awareness for Cushing’s Disease.  I failed.
 
But then, I decided to touch base in the Cushing's Disease support group on Facebook to see what everyone was up to.  I found messages of support.  I found examples of courage.  I found examples of bravery.  I found my fellow Cushies and so many others embracing each other and the true sentiments of what this day is about and I realized something.  I realized that this group is the epitome of Cushing’s Awareness Day.  This group is a collection of people that are willing to share, support, empathize, love, care, give and encourage freely.  I am so proud to call you all friends.  This disease has ruthlessly taken so much from me, but it gave me all of you!  Cushing’s has blessed me with knowing so many amazing people that I might not have ever come to know otherwise.
 
So, as the day comes to an end in my “neck of the woods” I want to send a special message of hope out to those of you looking Cushing’s in the face as you battle awful symptoms.  I want to encourage those of you who are still looking for answers – Don’t give up.  I want to thank those who offer support – even if you don’t know what to say, it means so much that you are willing to listen.

I am grateful for all my Cushie friends and the contributions each of them make to my life.  A special thank you to everyone for participating and sharing and making our group the great place that it is!
 
HAPPY CUSHINGS AWARENESS DAY 2013!

Tuesday, February 12, 2013

Lessons in HUMILITY and LETTING GO!


My lessons in HUMILITY and LETTING GO.    

 

For those of you who know me, you undoubtedly will agree that self-esteem isn’t one of the characteristics that I have ever personally needed to boost.  As a matter of fact, I have always needed lessons in humility.  I was born a self-assured individual.  Almost immediately upon exiting the safe confines of my mother’s womb, I locked eyes with, stared down, and as my mother would tell the story, intimidated the gracious woman that had just labored to bring me into the world.  The confidence I was born with was fostered by my parents and in my upbringing.  It was just part of me.  I rarely faltered in believing in myself and meeting life’s challenges head on. 

 

Things changed when I got sick and came face to face with a disease that attacks the very core of a persons being.  It isn’t easy to see your body and mind change and falter.  It was even more challenging to realize that this was not something that I could control.  And so, I suddenly became aware of “chinks” in the armor of self-confidence I had acquired over the years.  As a result of having CUSHINGS DISEASE and the years worth of battles that have ensured, my body, mind, and soul are showing the signs of war.  I am challenged daily to see and accept who I am and where I am.  It seems so easy to say to someone that the events and incidents in their lives make them who they are.  Yet, living that very sentiment when faced with changes that you are unfamiliar with can be daunting to say the least. 

 

And so it goes that I continue to learn from the events and things that occur along my journey.  Some lessons don’t come right away.  My timeline and the timeline of the powers that be are rarely in sync.  This simple fact is frustrating enough for me, as I am one who likes things to happen in a timely, organized, efficient manner.  However, I am constantly reminded that my way isn’t that “be all – end all,” and is rarely the direction in which my journey is headed.  And so I hang on for dear life. 

 

Sometimes the lessons that come to me are quite enlightening.  In these lessons I gain a sense of personal achievement and inner growth.  Other times, the lessons that I learn are but simply for the enjoyment of others…and the humiliation of myself.  These two stories that I will share with you are great examples of just this.  While they occurred years apart, I have found there to be an amazing correlation between the stories, as well as a direct link to the process that my journey has been so far and the place in which I find myself today.  This place is about understanding, accepting and LETTING GO! 

 

This story begins in Las Vegas, approximately two years prior to the catapult of my CUSHINGS journey.  At the time I had no idea that the constant, debilitating migraine headaches I had begun to have were in fact, red light warnings of the “construction zone,” (i.e. CUSHINGS DISEASE), that was just arriving on my horizon. 

 

My migraines, while insufferable, had become a recognizable part of my life.  I assumed they were a result of the intolerable heat of the Las Vegas summers, and had learned to recognize the early warning signs.  Being aware of my personal limitations, I could accurately judge the time I needed from the moment my symptoms began until I needed to home in a dark bedroom with the air conditioner raging.  It had all become second nature.  I had a system that was practically perfect. 

 

One hot summer day, I found myself racing toward home and my safety zone as my migraine was pushing in on me quicker than I had anticipated.  As I pulled into the garage, I was already shedding bits clothing that was beginning to bind and irritate me.  As I entered the house I began the ritualistic closing of blinds and cranking down the air conditioning as I made a “b-line” for the relief of my cold, dark bed.  Just as I reached the landing upstairs, the door bell rang.  In case you were wondering the bell ringing and the impending barking of the dog did nothing to ease the pounding in my head.  I cursed and retreated back downstairs when I noticed that it was the UPS man at the front door and he obviously needed a signature since he had yet to stop ringing the blasted door bell. 


My irritation at his incessant banging and ringing was only shrouded by the fact that my head felt as though a nuclear bomb had just gone off next to the base of my brain.  The sooner I could get him off my front porch, the quicker I could return to my dark, cold, cave and sleep off the pain.  After corralling the dog I flung open the front door and all but ripped the package and the signature box from the UPS driver’s hands.  I quickly scribbled something less than legible and handed my signature back to him.  The UPS driver stood there without responding.  This just irritated me more.  If you have ever had a migraine, you know that things tend to seem as if they are in slow motion, but it seemed that the slowness was affecting him more than me.  I couldn’t believe this ape was standing there taking so long.  As we stood there staring at each other, me squinting in pain from the desert sun, and him frozen in his stance, I mustered up a nasty hiss through my nausea to see if he needed anything else.  I barely caught his muffled “NUH-UH” as I slammed the door and headed for the bedroom.

 

As I passed the mirror in the hallway something reached through the fog in my brain and I faintly recognized a warning siren that was shrieking.  Something was amiss.  Suddenly, I knew what it was.  I froze.  As I whipped around to face the mirror, I noted through the glass on the front door that the UPS man still standing stupefied on the porch.  I grimaced and opened my eyes to my reflection to confirm that I had in fact, answered the door, signed for a package, and spoke with another person in nothing more than my birthday suit!  YES!  STARK NAKED! 

 

I took some solace in the fact that I was young, perky, and trim, not to mention I had most likely just provided that UPS man with the story of his career.  However, I was horrified and humiliated and needless to say, I avoided the UPS man for quite some time.  This story and my humiliation brought peels of laughter as my boyfriend, (now husband) took great joy is sharing my faupax as if it was a great “bar trick.”  I however, still cringed and blushed profusely every time I thought about it or the story was relayed. 

 

Ironically, this story re-surfaced recently.  And while time had lessened the prick of humiliation, another emotion accompanied it this time.  This time humiliation and my pride made me feel the need to explain that it was “when I was younger” and “when I had a better body” that this UPS story had occurred.  This time I was swamped with self-judgment and a lacking feeling of self-worth.  I was sure that the people hearing this story were thinking terrible things about my body.  And while the two emotions I felt were similar, the later, the self judgment, seemed to be the most damaging.  The idea of how insecure I was with my physical appearance and the feeling of being uncomfortable in my own skin was a terrific weight on my soul that I couldn’t shake.  In all honesty, I had to admit that it was just the “straw that broke the camel’s back.”  Due to CUSHINGS and the uncontrollable changes that it caused, as I mentioned, I have been waging war with my self-esteem for quite some time.  And while I had grown almost comfortable with this war, suddenly the bombs of doubt and judgment were falling all around me.  And the internal war waged on. 

 

Then, while preparing for house guests recently, I had the opportunity to submerge myself into my own thoughts, self-analysis and soul cleansing that usually accompanies a good house cleaning binge.  Of course, with a little picking, and some over zealous evaluation, suddenly, the scar that self esteem issues leave can once again become an open wound.  This was exactly what I subjected myself to.  After dwelling on this for far too long, I came to the conclusion that it was self-imposed emotional baggage based on superficial image and that needed to LET GO!  But as we all know that is easier said than done and I continued to mull it over.  UNTIL….

 
Until I was handed the last part of my lesson.

 
Let me back track a little to explain the day’s activities.  As I mentioned, I was expecting house guests and so had gotten up early to get some things done.  As a matter of fact, by 8:30 AM, I had accomplished more that I am able to do on most days.  Not being a morning person and not sleeping between the hours of 3 - 6AM do not make for a happy or ambitious “me” most days before 11 AM.  However, this particular morning found me busy and efficiently crossing many an item off my to-do list.  These lists used to be one of those overly organized tendencies that I had that fed and fostered my need for accomplishment.  However, now-a-days they are simply a necessity to keep me on track and prevent me from loosing my way as a result of what we fondly call my “brain farts.”  Yet another glorious side effect from the CUSHINGS.  But that is whole other issue that we will leave be for the time being. 

 
So, as I mentioned my morning had gone well.  I was cruising through my list of chores at a healthy clip.  And as the morning went on, and time ticked by, I kept up my head of steam but was thankful as I was down to the last few things on the list.  I began to slow a bit and lingered in the sense of accomplishment that I was relishing as I grabbed the bundled up trash and headed out the front door to add it to the collection at the curb. 

 
As I exited the house and meandered down the front steps with the dog on my heels, I casually noticed a yard maintenance crew that was stopped on the road in front of our house.  The truck was stopped and two workers were standing at the back of their trailer securing a piece of machinery that had come loose.  In the back of my mind, I vaguely noticed the quick snap of their heads, and despite the warning siren that was beginning to sound somewhere in my brain, I dismissed the attention and accredited it to the fact that they were concerned about the dog.  I plodded down all the stairs at the front of my house, walked along the driveway, stopped to kick a landscape rock back into place and once again noticed that these two men were actually staring at me.  I crinkled my nose, rolled my eyes and proceeded to dump my trash.  I then made my way back to the front steps, stopping to bend over and pull a couple weeds and once again noted the fixed attention of these random yard workers. 

 
Not willing to relinquish victory or feel uncomfortable on my own property because these two men were so rudely eyeballing me, I spun around, and stared them down.  I was surprised to see that neither man flinched and so I stomped into the house feeling annoyed but a little flustered at the same time.  Upon closing the door behind me, I finally focused enough to register the warning siren that was now screaming in my brain.  Something was wrong, but my foggy CUSHINGS brain was having difficulty focusing in on the issue.  I double checked the door lock to ensure my security and plodded up the stairs to the dining room where I came face to face with the reason for the internal warning sirens. 

 
There, hanging on the back of one of my dining room chairs was my shirt that I had removed an hour or so earlier when the morning’s activity had begun to over-heat my body.  I stood and stared for a moment in disbelief.  Then for the sheer shock value, and because I was totally unable to drop my eyes to my torso, I bolted for the bathroom mirror.  There I stood, gasping with my hand to my mouth looking at the reflection of a saggy thirty-something CUSHY body with nothing more than a bright blue toned, ratty, old push-up bra and Capri pants.  Again, I found myself feeling mortified.  I rushed back to the front room and peered around the window frame hoping that the men I had seen out front were mere figments of my imagination.  NO SUCH LUCK!  As a matter of fact they were obviously thoroughly enjoying the show they had just seen as they were talking and pointing at my house. 
 

As they turned to look my way, I smashed my body against the wall to avoid being seen in my bra and slid to the floor.  As I slid down the length of the wall to the crouching position attempting to stay out of sight the irony of the situation hit me.  Not only had I just been waging war with myself esteem and body image, but then I had pranced out into broad daylight and exposed myself with what must have looked like great audacity, and was now hiding below the window to avoid being seen in my bra!  …by the very men who had just been able to see not only the bra, but all sorts of other atrocities as I bent, tugged, pulled, plopped, and bounced my way around the front yard. 

 
I’m pretty sure the hysterics, peels of laughter and tears that followed were a result of the melting pot of emotions that I had been forced to address.  The lessons I was being served were coming to me on a silver platter.  There would be no avoiding, there would be no rationalizing, and there would be no ignoring.  Honestly, who could ignore what I was putting out there for the world to see. 
 

This was my lesson.  What was I being told?  I have to believe that after tossing the issue around and coming to no solid conclusion, my subconscious was taking over.  My rational mind was clinging to a previous skewed sense of self; a Cinderella story that I had made up to ease my own mind; a delusion that no matter how I tried to rationalize, was a ridiculous scale to which I was trying to measure myself.  I got the HUMILIATION part of the lesson.  I had a good dose of that during round one in Las Vegas.  But the part of the lesson that I need to grasp this time was the LETTING GO. 

 
As I sat in my entry way I was swamped with emotion.  I cried as I mourned the loss of the ideals and dreams I had grown comfortable clinging to, knowing it was now time to release them.  I was overcome by sadness for the lost time I had wasted measuring myself by an unrealistic standard instead of loving myself as I was.  Then I laughed heartily remembering my experience in Las Vegas and my most resent parade down the driveway. As the giggles drifted away, I was overcome with a sense of strength and resolve that it was time to LET GO!

 
LET GO!  It is so easy to say.  It is so easy to think about.  But it is one of the hardest things to do.  No matter what the circumstance may be, clinging to the familiar presents no challenge.  Following in the tracks we have ground into our comfort zones can be done without effort.  Holding fast to unchanged ideals, dreams and goals offers us no challenge.  Status quo isn’t bad, but offers no growth.  LETTING GO makes us strive.  LETTING GO makes us readjust.  LETTING GO helps us learn.

 
Here’s to each of us having the strength of character to take our lessons in humility, and more importantly, the insight to know when to LET GO!