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!  

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.