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!  

Brain Fog and lost moments....

As I filter through my journey in my mind, things come to me in spurts. Maybe it has to do with there being so much that happens in the journey one takes with this disease...but most likely it has to do with the fact that our brains become "foggy." We endure, yet, (maybe by the grace of god) we forget pieces...large and small.


A newbie to the support group asked today if anyone suffered from issues remembering things. Sadly, I could quickly reply that I knew that all too well. At times I can laugh...but others it makes me sad. My brain has graciously spared me some ugly memories - i.e. my surgery. But, stolen from me some very precious ones - i.e. my wedding. And then, along the way, my brain has simply given me fits or left black holes in places of my life. Let me share some examples with you:


#1: TINY HICUUPS - My brain output would, and sometimes still does, regularly confuse words and their proper places of my speech. I would say words in sentences that didn't even fit - like: "Could you please pass the watermelon." - when I meant to say, "Could you please pass me the scissors." The funny part is that "I" am not usually the one to catch the "hiccup." I probably would never know that I have substituted a wrong word if it wasn't for the funny look that people around me get on their faces. I am all too familiar with that look....and I know immediately that I have inserted an inappropriate word somewhere in my dialog. Most of the time I am able to "giggle it off" and no one seems to mind too much. But it embarrasses me terribly. I hate thinking that I am less than articulate and that I sounds stupid. But, LETTING GO is a lesson one has no choice but to learn on this journey!


#2: LITTLE HICUUPS: Sometimes simple tasks get crossed. Sometimes I'm lucky enough to catch these mistakes and there are no witnesses around - i.e. I go to pick up the phone and find a half gallon of milk in the cradle...and yes, upon opening the fridge to return the milk, I find the phone sitting on the shelf. One time., I was sitting in the living room when all the sudden the washing machine started making a terrible noise. I ran upstairs and threw open the lid to find my hand garden tools submerged in water. I couldn't imagine what the "H.E.Double Hockey Sticks" was going on. I removed them and dried them and then went out to the shed to put them away. When I opened the door to the shed, on the shelf, I found my load of dirty laundry sitting there where the hand tools should have been! I often wonder how many times this type of thing has happened that I have been completely unaware of. Still a lesson in LETTING GO!


#3: NOT SO LITTLE MISSING MOMENTS: Sometimes the holes are larger than I would like to admit. About a year after my surgery, while battling my long term disability, things got stressful. We were relying on my disability to simply exist. There was no extra and the "ends" didn't even come close to meeting. (but that is an entirely different topic). As I mentioned, my communication with my case rep. was vital. One Monday morning, I had a very important, stressful, detailed 30 minute conversation with my case rep to straighten out some medical records and other issues that my check was dependent on. After my call, I called my husband to tell him about it. Then, 20 minutes or so later, I picked up the phone, dialed my case rep and left a dreadfully rude message detailing my irritation with no one taking the time to speak with me. I was fuming. I called my husband at work and left him a message to let him know that I had left an irate message for my case rep. Later when my husband received not only my message, but a very confused message from my case rep, he called me at home. You can only imagine the confusion that I felt as i didn't remember ANY of the first interactions. it was like they didn't exist at all in my mind. I was humiliated. But, what do you do? Practice LETTING GO!


I must admit that my lessons in LETTING GO are continual...and some of them have been bigger than others...and some have been pretty funny!

 

Back-Tracking ...My 1st Surgery and the Hospital Stay

I was reading some posts on the CUSHINGS DISEASE Facebook support group that I started and thinking back to my 1st surgery and hospital stay and how much our doctors omit or forget to tell us!  This is something that I wrote upon reflecting while recovering at home in the time just after my surgery:

Summer/Fall 2005


My hospital stay went well. I was up and walking the very next day. I wanted those Ted's socks OFF and they told me that they were staying on until I was up and walking, reducing my risk of clots...so I was very motivated.

 

All considered, I felt pretty good. I don't know if it was simply relief from waking up from brain surgery, excitement that I had partial vision back in my right eye, having my family rally around me, or if my body actually felt some immediate relief from what had become a daily challenge. Whatever it was, I remember feeling better than I had in a long time.

 

I had staples in my stomach from the incision where they took fat to pack my spinal cord to avoid seepage.  I had to have instructions on how to maneuver so as to sit up without causing myself the spins or main in my stomach.  To this day, I don’t understand why they couldn’t have done some cosmetic surgery on my abdomen since they were already in there.  Cushings – a medical condition – caused the issue, so why not fix it while I was under?  Someone needs to think about that!  But that is a whole additional tangent that I could get off on…

 

What no one told us, what would have been helpful to know, was that we were awaiting a ‘CRASH.”  I don’t think I even really understood what a crash was until weeks later.  What the doctors failed to tell me was that my body was going to freak out as soon as it realized that I was not producing high levels of cortisol anymore.  I didn’t understand the concern regarding Adrenal Insufficiency  - Hell, I didn’t even know what AI was!  They faithfully tested my blood and vitals and came in and out for 5 days.  What I didn’t understand at the time was that I didn’t have the crash they thought I would.  …at least not while I was in the hospital.

 

The worst thing I endured while at the hospital was the packing and stints in my nose.  I became aware of them a started to feel them on Sunday, (2 days after my surgery).  As my passages started to dry out, they started to annoy me and I started to ask about getting them out.  The nurses were vague and only upon persistence did the ENT agree to come and see about taking them out.  He arrived EARLY one morning to remove them.  I was a bit dazed and sleepy – and for that I am grateful.  Removing the first side of packing brought me to a level of pain I was unfamiliar with.  While still spinning from the first side, he quickly removed the other side.  I clearly recall the room spinning.  OH.MY.GOD.  Once the pain subsided to a point that I could focus my eyes, I was astonished at the amount of packing that had been inside my head.  The two worst experiences I recall with clarity during my surgery itself involve the ENT. 

 

So, I was released from the hospital on Wednesday, June 15, 2005 5 days after my surgery.  I was excited to leave, but woke up feeling worse than I had during the entire hospital stay.  The ride home was excruciating.  I felt every bump and jiggle in the road all the through my spine and into my brain.  I was in tears before we left the hospital parking lot, but I was so glad to be home in my own bed.  I was ready to heal and get on with my life as soon as possible. 

 

By Wednesday evening, I wasn’t feeling so hot.  I was in pain – worse than any I felt in the hospital.  I slept very little that night.  Thursday didn’t bring anything different.  If anything, I felt worse.  I was taking the oral RX pain meds but they weren’t settling well.  I was in severe pain.  EVERYTHING hurt and the medication they had giving me wasn’t helping, as a matter of fact, it seemed to be causing me problems.  It was so bad that I remember telling my mom that I thought I was dying.  They called the ER and the Doctor and found out all about the “CRASH” that I was obviously having.  Again, this might have been useful information to have had PRIOR to going home so I knew what to expect.  I was given some hydrocortisone to help prevent AI and after about 3 days, my body started to adapt and I officially started down the path of weening. 

 

My mom was with us for 2 weeks after my surgery.  She cooked and pretty much did everything.  I couldn’t bend, or pick anything up and quite honestly, I felt terrible.  My muscles were so atrophied from the months prior that I was pretty helpless.  I took little walks, ate a little and slept a lot. 

 

I remember the night the first little bit of my taste came back.  My mom had made dinner and I was eating a little bit, and suddenly I realized that I could taste a little bit of it!  It took a few weeks for the numbness in my nose, teeth and upper lip to return as well as all my taste to all go back to normal.  I had and still do sometimes have an odd sensation in my nose if I rub it wrong. 

 

I still have trouble remembering the weeks immediately following my surgery with any clarity.  I am grateful that I had long term disability insurance at my work so I was not in any hurry to get back to work.  As a matter of fact, that additional $4/pay check for long term disability insurance turned out to be one of the smartest things I ever did.  I had once been told that you are more likely to use short and long term disability than you are life insurance, so if you have the option, you should ALWAYS elect to get it and buy as much as you can.  Again, I digress…

 

A couple final notes about my hospital stay:  I recall my endocrinologist coming to see me one time.  I was walking in the hall way and he stopped to tell me that I had a cure and that I needed to come in to his office in two weeks to get set up on medication.  Later I found out that he billed us thousands of dollars for a brief 30 seconds of his time in a hall way by an elevator.  Also, I remember the surgeon coming in as I was getting discharged.  He came to tell me two things that he thought I should know.  First, moving forward I would probably be very susceptible to heat and not react well to getting overheated.  And the second…I have no idea what he said.  Today, I look back at all that we have learned and all that we have figured out by ourselves and I am in awe of that fact that he only had 2 things to tell me!  Yet another instance to prove that there is still so much that even our medical professionals need to learn about Cushings!     

Ok to Miserable…Treading Water to Sinking…Coping to hopeless - in 6 seconds flat!

February 12, 2013

Cushings Disease is like no other.  As if not bad enough that our lives as we knew them – our lives as we dreamt them – are yanked from us, we also have a rash of physical symptoms, aches and pains that are heaped onto our fragile bodies and even more fragile psyches.  The tragedy of it all is that it is a very slippery slope from maintaining to falling off the deep end. 

It is hard to explain to anyone who isn’t living it.  Who am I kidding? It is next to impossible to come to terms with it in my own mind.  How does one reconcile what you desire, what you dream about, who you know you are in your heart and soul with what you can no longer do, the dreams that you have had to relinquish, the person you know you are, but simply can’t physically or emotionally maintain?  Why, on top of all the pain and physical problems, is my ability to cope compromised - allowing me to slip into the dark recesses of my mind; the corners of which are haunted by negativity, self-doubt  and self-loathing. 

Maybe I’m delusional, but I like to think that I do a decent job focusing on the positive.  Maybe I’ve just fooled myself, but I like to think that I have found a way to accept my limitations without forgoing the way of life that I previously pursued.  Maybe it just makes the bitter realities of my life seem less difficult, but I like to think that I’ve done a decent job of re-calibrating my dreams and desires to match the reality of my life as it is with Cushings.   But somehow, despite my efforts, there are times that I am defenseless against the pull toward “the dark side.” 

The thing that frightens me most is how volatile my grip, despite my efforts, proves to be when tested.  Most days are fine.  Most days I am able to maintain an inner calm.  Most days I can cope with the pain.  Most days are do-able.  Most days I can maintain…Most days.   But then, out of nowhere, I can’t.  I can’t calm my inner panic.  I can’t cope with the pain.  I can’t see how to do what I need to do.  I can’t control anything.  I don’t recognize myself.  I feel out of place – like a terrorized visitor – in my own body. 

A little change in pain level, a little variation of the accepted ‘norm’ and I’ve lost my footing.  From there, it’s an odd downward spiral.  Suddenly, I can’t imagine what calm even feels like.  Suddenly, pain seems more intense.  Suddenly, I can’t see a way to begin again.  And then, to top it off, I suddenly see my pitiful self in the eyes of my husband.  I see the weak, unstable, whiny, physically changed, unsure, crabby, impossible to deal with, unable to please, sad and difficult person that I am, and I slide, neck deep and flailing, into the slick and slimy pool of guilt that pulls me further into the dredges of my own despair. 

What a sadistic little trick it is that the very thing that we need to cope with the stresses of life – cortisol – is the thing that is causing all the problems.  It’s like saying, “You need to drink this water to stay alive, but, oh! By the way…the water is poisoned and the poison will kill you.” 

How does one cope with that?  How do you pull yourself out of the mire?  How do you stop the fall into the oblivion?  Where do you find the strength to center yourself again?  How do you stop the out of control spinning? 

Funny thing is, at this point in the downward spiral, the gumption that I need to get back on track is nonexistent and therefore I wallow….miserable!