My Mortality

Looking your mortality square in the eye is an odd sensation.  

I’m not talking about the sense of our mortality we have when we lose someone we love, nor the simple understanding of the fragility of life.  I am referring to the bone-chilling circumstance that brings us face to face, looking dead into the eye of our own mortality.  As redundant as it may sound, it is life altering.  You can’t help but feel like you are knocked a little left of center.  Depending on your age, the reason for the encounter and so many other variables, it only stands to reason that one’s reaction will vary wildly.  

For me it seems, facing my mortality as a result of Cushing’s Disease has become much more common place than I would ever have anticipated.  It has become more like an all too familiar acquaintance that you are not so fond of that is somehow always standing nearby when you are extending an invitation - and so - they are always part of your social events.  Like it or not…there they are, and damned if they aren’t the most reliable one of everyone – the one that you can count on showing up every time!  Then, somewhere along the line, the uncomfortable becomes the norm.  That is exactly the relationship I have with my mortality as a result of this awful disease. 

I remember clearly the first real encounter I had with my mortality – the first time in my adult life that I was aware that I might be living the last precious moments of my life.  It wasn't during the signing and notarizing of my living will, last will and testament, medical directives or while writing letters heart-felt letters to my loved ones to be distributed in the event that I did not wake from my scheduled pituitary brain surgery.  Nope!  I had felt the significance of those events, but somehow the impact I expected was not so severe.  Yes, it was the end of my life that I was preparing for, but it hadn't impacted me like I thought it would.  

However, about a week prior to my surgery, in a very weakened state, vision almost completely inhibited, extremities swollen and almost impossible to move, I had the sudden urge to wash my car.  It was a warm May afternoon, and all the signs of summer were abundant.  I took pride in keeping my car clean and well cared for, and I suddenly NEEDED to wash my car.  Despite not being able to hold my arms up long enough to brush my teeth, and being so atrophied that I couldn't walk to the kitchen without stopping to rest a couple time, I was dead set on backing my VW Jetta out of the garage, getting the hose, bucket, soap and sponge out and washing my car.  I was exhausted almost immediately.  Within minutes, I was sobbing from the pain and effort that it was taking to take on this chore.  But, I kept going.  The pain was intense and my quiet sobs continued.  Somewhere along the line, the enormity of what I was doing set in.  I was potentially washing my car in my driveway, in the warm summer sun with the garden hose in my bare feet for the last time of my life.    It was like being socked in the gut.  By sobs became frantic and guttural.  Before long I was literally wailing uncontrollably.  I was doubled over gasping for breath when my neighbor cautiously approached and asked if I was alright or if I needed help.  I whirled around to meet his concerned gaze that quickly turned into astonishment when I yelped between gasping for breath, “What if I never get to wash my car ever again?!?” Astonished, he sputtered out something along the lines of “let me do this for you” or “I can help you” which was of course met with my ever rising screeches of, No! No!  I can do it!  I want to do it!  What if this is the last time I ever do this?!?”  My poor neighbor, eyes the size of saucers, excused himself with a meek, “I understand. Come get me if you need me” and hastily scurried back across the street and closed his garage in record time.  Undoubtedly praying that I did not, in fact, take him up on his offer and come over and ask for any help!  That was my first vivid encounter with my own mortality. 

Since that occasion, it seems as though facing my mortality is much more common place.  I am all too familiar with my mortality and that frightens me.  In recent months, (over the past 18 to be exact) I have seen the evil that is Cushing’s Disease rob this world of too many precious people.  It happened again this past weekend.  It is soul crushing on so many levels. 

Obviously, it is painful to lose friends to this disease knowing that the only offense they committed when it came to their health was relying on medical professionals that failed them in their quest for help.  But more damaging is that these instances are becoming more and more common, and worst of all, there are few in my life that get it.  They don’t get it and they don’t want to.  No one wants to acknowledge that this Disease can kill me.  No one wants to understand that this isn’t about eating too much, being lazy, or simply not exercising.  It seems much easier for others to make a judgment based on what they see.  It is easy for in-laws to make comments like, “I wish I was as self-assured as you and could just not care what I look like.”  It is much more understandable for friends to say, “ If you wanted to be healthy and do more, you could.”  What seems to have escaped everyone’s attention is this one simple little fact.  CUSHING’S KILLS!  Just like cancer, without discretion and without mercy, Cushing’s can and will kill! 

Did you know that?  Did you know:  “Morbidity and mortality are higher in patients with Cushing's disease, with vascular disease a frequent cause of death.[2,32,33] Cardiovascular complications, including coronary heart disease, congestive heart disease and cerebrovascular events, contribute to the morbidity and mortality of patients with undiagnosed or untreated Cushing's disease.[34,35] Early diagnosis and successful treatment of Cushing's disease is therefore most important.” 

They scary thing about that statement is that despite the knowledge that early diagnosis and successful treatment are vital, the medical community that we rely on to treat and help us are amongst the most uneducated and unaware about Cushing’s Disease.  How then do we expect anything less than to continue to be faced with our mortality?  Can we dare hope for anything other than dying at a young age?  Is it just a pipe dream to want a full and satisfying life?  These are the questions that I contemplate.  But, what I really want people to know, is this: Does anyone really care? 

People continue to befuddle me.  This past week, I posted a random snap shot of my kitchen cabinet contents – an antique jar collection that I am proud of – and within a very short time, I had multiple comments and a ridiculous amount of ‘likes.’  The same thing happened with a photo that I posted of me and my hubby.  I was astonished by all the activity it received.  Don’t get me wrong, I understand that it what social media is all about, and the narcissist in me loved the attention.  But here is the part that really got me.  Shortly thereafter, I posted a sincere post about my friend who went to sleep Friday night and didn't wake up – losing her life to the effects of Cushing’s on her young body – leaving her 4 year old son in the world without his momma – all because her medical team failed her.  This seemed like a post worthy of some activity.  I could only imagine that maybe people would realize that this daily battle I wage with Cushing’s Disease will potentially cost me my life.  My husband even re-posted my post, with kind words about what I cope with.  I was certain that this realization would help others understand what he faces as a result of my battle.  But, you know what happened?  Do you think 31 people responded like they did to the photos of my dogs, or did the 25 who responded to the picture of my cabinet contents say anything?  No.  What happened, you ask?  6 people responded.  SIX PEOPLE CARED ABOUT THE LOSS OF A LIFE AND THE ILL EFFECTS OF THIS AWFUL DISEASE. 

I’m not just hurt.  I am offended.  I am offended that it doesn't matter to the masses.  I am offended for my husband, who stuck his neck out there and posted something very personal and only 4 people – 2 of which were my friends even acknowledged his post. 

The obvious in all this is that awareness is lacking.  I know that I have to continue to raise awareness.  I know I can’t expect others to empathize with what they don’t understand.  But I also know that some people just can’t be bothered.  This makes me sad.  This is the sad condition of self-absorbed attitudes that are so prevalent and so hurtful in our society.  How do I make a difference?  How do I change it?  I don’t know.  But I do know that AWARENESS in any form possible is the key to us getting the help that we need and deserve. 

AWARENESS SAVES LIVES…and it starts with me.  Want to know more about my journey?  ASK ME!  I’ll tell you more than you ever want to know.  Will it be uncomfortable?  Probably….but if you care, it won’t matter. 

My mortality?  It will continue to pop up and smack me silly I suppose.  The question for me is, can I use my familiarity with my mortality to make a difference for at least one other person?  HOW can I make a difference for just one other person?  

April 8th - National Cushing's Awareness Day 2014

Today is National Cushing's Awareness Day.  BOY-O-BOY am I aware!  It seems like a lifetime ago that I was diagnosed with this awful disease.  The "cliff-notes" of my journey go a little something like this:

After a 3 year battle to get my diagnosis, I was diagnosed and had my first pituitary 5 mm adenoma removed in 2005.  The recovery was really rocky.  My body had taken quite a beating.  It took me 9 months to ween off the hydrocortisone - all the while barely surviving withdraws every time I dropped my dosage.  BUT, that buggar was out of my head and I was happy to be free of it!  The next 2 years were all about some pretty severe ups and downs.  I flip-flopped to what they thought was Addison's Disease and was Adrenal Insufficient (AI).  I went through doctors like under ware.  As difficult as it was to find someone to give me my diagnosis, it proved just as challenging to find a physician to treat me afterward - more so in fact.

In the meantime, was learning some really hard lessons.  I was finding out who my real friends were.  There were people in my life that didn't want to know what was going on.  It was too much for them.  They were unable to cope with a friend who was chronically ill.  And while I was sad to lose them in my life, I understood.  I was living this nightmare, and I didn't want to deal with it.  I also saw the true colors of extended "family" who simply refused to pay attention.  To them I was just lazy.  It was all very hurtful, and to be honest, I still carry resentment towards some people today.

On the bright side, there were shining stars - people sitting on the sidelines of my life until this all started - that stepped up and won my eternal gratitude for being solid pillars of friendship and so much more!  I will love them forever for the simple and the grand gestures that they made.

Then there is my husband who has been an unwavering rock through all this.  We weren't married when I got sick, so he could have left.  I would have understood if he would have said, "I didn't sign up for this.  I'm sorry it is just too much."  It would have been painful - but it's so true....this is TOO MUCH!  But he didn't.  He stood by me.  He patiently rode out every shit storm that came our way.  He continues, to this day, to be the only person that sees the worst that this disease brings out in me, and by some miracle, he stands faithful at my side.  I could never express my gratitude and love for this man and it pains me that I still fail him in many ways as I continue to battle this god-awful disease.

At one point in my recovery. in late 2007 - I started to feel good again.  We were thrilled to get the "ok" from my doctor to start trying to have a baby.  We saw the specialists, spent ridiculous amounts of money and almost 3 years "trying" to conceive.  It was a long, emotionally and physically draining time in our relationship.  None of our efforts or procedures worked.  We stopped treatments late in 2010 as we were preparing to move.  To be honest, I was ready to stop.  I was exhausted and sick to death of needles, pills and out patient procedures.  I had to let go.  It may not sound like much, but it is an open wound for me.  I can tell you that of all the dreams, of all the certainties and uncertainties in my life, of all the things that I've known, of all the experiences I've had - there has been one constant and that is that I wanted to have children.  But, I was facing the fact that it wasn't going to happen.  This is a mountain of disappointment and despair for me that I still have not comes to terms with...but that is a whole other ball of wax.  

And so here we are at my current place in my journey.  I have another tumor.  Actually, I've have had #2 (Just in case you caught the subtle jab - Yes!  When I refer to my second tumor as "#2" I mean to refer to it as poop!) since the first MRI after my 1st surgery, but they were unable to identify it as anything but "possible scar tissue" until 2009 when they determined it was in fact another adenoma.  Suddenly the battles I had been enduring and the reason for them came into focus.  I had/have another tumor!

I was sad when we found out there was another tumor, but I wasn't completely destroyed.  I figured, "Hey, at least I already know what the problem is.  I won't have to suffer through trying to get a doctor to listen to me this time.  I can handle this.  I did it before, I can do it again!!!"

Sadly, that isn't the way it worked out.  I was devastated to come to the realization that my previous diagnosis and all that I had been through didn't mean diddly squat!  I was back at square one listening to doctors tell me I was just fat and needed to lose weight.  It was actually more earth-shattering than the original process because I was shocked at the blatant disregard for my medical history and the simple lack of knowledge in the medical community about Cushing's Disease.  I've never been more frustrated and more down-sodden.  Finally, after years of rallying and trudging on, after all that I've lived through, I just wanted to give up.  I suddenly couldn't find my brave face.  I couldn't muster any positive thought.  All I could see were the "can'ts" - Can't do the things I love like skiing, hiking, and camping because of muscle fatigue, Can't have people over for game night because I have to screen everyone for illnesses because my immune system is so compromised, Can't be a weekend warrior because I need to actually rest or I will make myself sick, Can't have children because my body is sick, Can't be positive about all this anymore because there just isn't anything good to focus on....CAN'T!  CAN'T!  CAN'T!   It seems that I sometimes feel like Jack from the movie Titanic.  I survived the actual ship going down, only to die in the cold dark sea that is CUSHING'S DISEASE!  Grrrrr!

And so today, as I sit at home, ironically sick in bed, I think about Cushing's Awareness day.  My hope is that at some point in the near future the medical community can get a grip on this disease.  My hope is that I will continue to find strength to accept my reality and self-compassion to adapt my ideals to this reality.  My hope is that maybe, by telling my story just one person feels less alone in their journey with this awful disease.  My hope is for another doctor to continue Dr. Harvey Cushing's legacy of forward thinking and find a CURE for this awful disease.

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.  

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!  

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. 

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

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!