Are you kidding me?!? I have a F#@%!NG "animal disease?!?"

I can clearly recall the morning I received my diagnosis.  I remember the overwhelming relief of knowing that I wasn’t crazy, followed by an intense craving for knowledge.  This desire to know more could have been equaled to a hunger pang after days of fasting.  Oddly enough, I had received a diagnosis and been ushered out of the doctors office with little information.  I wanted…no, I NEEDED to know more about CUSHINGS DISEASE.  Doug and I began an immediate search on the internet for any and all information that we could find. 

The first page that the search engine retrieved for me will forever be blazed into my memory.  Oddly enough, this is one of the most disturbing things that my best friend also recalls about the days surrounding my diagnosis.  The topics looked something like this:  “CANAINE CUSHINGS,” “A PET OWNER’S CRASH COURSE IN CUSHINGS,” “CUSHINGS IN HORSES,” “CUSHINGS IN DOGS,” “IS CUSHINGS DISEASE THREATENING YOUR ANIMAL?”  I was horrified as I paged down through the results.  I felt like I was going to be sick.  My mouth gaped open as my eyes frantically searched the pages for some reassurance that I was not in fact plagued with an animal disease.    I remember thinking that I just wanted to die and be free from the humiliation. 

That being said, I think this might be an ideal place to first touch on one of the most significant manifestations that CUSHINGS DISEASE brings into the lives of the afflicted as well as those around them:  THE DETERIORATION OF SELF-ESTEEM AND/OR SELF-WORTH.   

Prior to CUSHINGS, I was a fairly confident person.  I was raised to believe that I was an individual and that my self-worth was not based on simple physical aspects.  I had what my dad called a “good head on my shoulders,” and I hadn’t broken any mirrors that I knew of.  I had a self-developed style that I was comfortable with.  I was confident in who I was.  But as I began my battle with CUSHING DISEASE, things changed.  My physical appearance changed.  My body wasn’t my own anymore.  Despite all my attempts, I couldn’t control what was going on.  One morning in the spring of 2005, I woke up and was shocked to see the reflection in the mirror.  I didn’t recognize myself.  As I peered into the mirror, I remember leaning forward and touching my own skin to see if it was really me in the reflection.  “Pinch me!  Am I dreaming?”  Suddenly, while searching for just one fragment of familiarity, the emotional and verbal abuse of two years worth of doctors telling me I was just a fat, lazy, hypochondriac, combined with the stinging words of friends and relatives, enhanced by the sideways glances and comments of strangers, magnified by the embarrassment of not fitting into any of my clothes, compounded by the lack of recognition of my own image in the mirror in front of me…it was all too much.  What little self-esteem I had managed to hold on to crashed to the floor in each tear that ran down the poofy cheeks on a face that I no longer recognized. 

This scenario, as I have described is no exaggeration.  As a matter of fact, the magnitude of emotion is difficult to put into words.  Unless you have experienced it, you will never understand the emotional break-down.  The emotional condition of many who are afflicted by this disease is so fragile.  The trauma encountered on so many levels, physical as well as emotional, and the damage done by thoughtless remarks can be devastating and long lasting.  We would all do well to remember that harsh words, once said, are not forgotten. 

Therefore, as a recommendation to those who are supporting a CUSHIE, remember that while you may be able to empathize, you will never know how it feels.  To those in the medical profession, I suggest they remember the word “CARE” in their health care provider title.  And to anyone who has CUSHINGS or is still looking for answers, I say, remember who you are and that you are not alone. 

The gut wrenching feelings of inadequacy and humiliation as I’ve described are like a disease in themselves.  They stick with you and become a DARK VOICE that inhabits the dark, damp corner of your mind.  From the very beginning of my journey to this very day, and all the moments in between, the DARK VOICE has never missed an opportunity to sidle up beside me a take firm grip on my hope. 

The DARK VOICE was definitely by my side the morning I was searching for information about CUSHINGS DISEASE just after my doctor’s appointment.  The DARK VOICE was sneering as I came across nothing but animal references while looking for information about my diagnosis.  I wasn’t finding the information that I so desperately needed to anchor my hopes in.  And what was more, the information I was finding was yet another slap to what, if anything, was left of my ego. 

I was again, as I had been and would be many more times throughout my experience, ALONE.  I had NO INFORMATION, NO DIRECTION, NO ASSISTANCE, and NO GUIDENCE.  In what was left of my life, I WAS ALONE…SO ALONE!  And at this moment, the DARK VOICE once again whispered the thoughts that I could not bear to address myself.  “What life?  This is not living.  You should just give up.  Retreat with me to the dark, damp corner of your mind.  It is safe there.” 

Through the darkness of my despair at that moment, through the weight of whatever it was that was making me hold my breath as I sat at my computer thinking that I was no better than a dog, (and don’t get me wrong, I love my dog…but seriously?!), I heard a bell.  I tried to swipe at the curtains of despair that were shrouding me, and hush the DARK VOICE so I could listen.  And the bell came again.  I thought I might have been having a spiritual experience.  Was I hearing Buddhist tingshaw bells bringing my mind to clarity?  And the ring came again.  Was I receiving a message from the Universe?  NO!  The phone was ringing! 

But maybe, if you need to believe in fate, maybe you can associate this phone call with a higher power.  I do.  This call was from my then boyfriend, and companion of six years, Doug.  He too had been frantically looking for information about CUSHINGS DISEASE, and fortunately had been slightly more successful.  We devoured what little information we could find as quickly as we could and our journey spun out of control from there.  However, we still struggled to get a grip on what was happening.  In hind sight, we would both agree that things would have been easier if we would have been more educated; if information would have been more readily available to us. 

The dread of the diagnosis process, the struggle as we tried to learn what we could about this mysterious disease, the confusion as we attempted to digest all the medical terms that seemed like an foreign language, the myriad of questions that we had about health care and the options available to us, not to mention trying to understand the reason for the many tests and then interpret the results, all this made our already difficult journey that much more stressful.  Later, (much later than should have been), we learned an irony.  The very thing that may have intensified my CUSHINGS DISEASE, STRESS, was the only thing that seemed to be a constant in our lives.