How can you be desensitized to my personal hell?!?

1:20 AM – I just endured a random asthma attack.  I haven’t have one of those in a while.  I forgot how they suck.  I've got that under control – other than the residual uncomfortable feeling in my chest and the weird nerve sensitivity thing that always lingers.  And let’s not forget that I now have a terrible case of heartburn.  You know the kind that makes you feel like you are on fire from the inside out and requires that you sit up for a while.  Not to mention the fact that I am now wide awake and don’t foresee sleep in my immediate future.  Ugh! 

This has been a whopper of a week.  Due to the drastic change in the weather and a low that settled in, I endured a rager or a migraine that came on without warning and plagued me for a solid 24 hours.  That was a delight. 

But, something interesting happened tonight.  As my asthma attack came on and I was roused from my slumber, my husband lay in bed, still awake, messing around on the internet.  The ordeal, typical of the asthma attacks that plague me, slowly gained steam from an annoying tickle to an acute attack.  As I mentioned, I hadn't had an asthma attack in quite a while so I was slow to catch on to what was happening…plus I was asleep so it took a bit for it to resonate.  But, within a few minutes, my tickle and coughing turned to a severe coughing fit and labored breathing.  I was suddenly sitting up on the side of the bed gasping for air.  To my dismay, my husband barely acknowledged I was there.  As a matter of fact, he had decided he was sleepy and had turned off the iPad and rolled over to go to sleep…without saying a word to me as I struggled to breathe. 

I was suddenly pissed.  Why didn't he care that I was in distress?  Don’t I matter enough to get a “are you ok?” out of him?  It was a big WTF moment for me.  So I decided to calmly – to the best of my ability – tell him that I was perceiving his actions as him not giving a crap about me and that was the basis for my constant complaint that we just seem “dis-connected.”  I mean really, how could you just roll over and go to sleep when someone you care about is having trouble breathing?

Once I said something. He asked if he should close up the windows in case it was allergy induced.  I agreed and he trudged off without a word while I raced for my inhaler.  He returned to bed after closing windows just shortly before I did and was all settled in again.  I was still fighting for breath, waiting for the albuterol to do it’s job and it hit me that his actions in this scenario were the root of me feeling like he doesn't care about me. 

I have to stop and tell you here that I believe that if you love and care about someone, you don’t have to tell them what you need because they are invested enough to know you and so they offer the kind of support you need without you telling them …and that’s what makes it so amazing…they care enough to know you and know what you need.  – Now, before you freak out I will admit that my line of thinking may be a bit Cinderella Syndrome based, but I do this for those I care about, so I expect that from those who care about me. 

So here’s what happened.  Instead of getting steaming mad and super hurt about him not caring and not giving me what I needed.  I decided to just tell him that his reaction – or lack thereof – was hurtful to me.  I also told him that I didn't understand laying next to someone who was struggling to breathe and not saying something like, “are you ok?”  “can I help?”, etc.  He replied with, “But I got up and closed all the windows.”  To which I replied, “Well trudging off seemed more like forced action more than concern and caring to me.”  I told him that I wanted/needed more than what seemed like irritation to me.  I needed concern and compassion.  I needed empathy and care.  He replied, “I do care!”  I retorted, “It doesn't seem like it!” And then, after a moment of silence he said something very important.  He said:

“I guess I’m a bit desensitized.  You always hurt.  There is always something wrong.  I’m just used to it.”

I was stunned for a second.  Then I was hurt.  I mean, DUH! I’m the one living this hell.  I’m the one that is in pain every second of every day.  I’m the day that still faces each day with a decent attempt at focusing on the positive despite wanting to just curl up and sleep. 

Then he went on and said, “I take my health for granted.  I think everyone does unless they face something like this.” 

This was a really profound moment.  It has been so long since I've felt “good”  - screw that – It has been what seems a lifetime since I’ve known a moment without pain – I can’t even imagine what it must feel like.  My focus is on making thru the next hour – 30 minutes – or sometimes the next breath.  I don’t know what it is like to think about planning an activity or event and not having to consider if I can physically take that challenge on.  Let me be clear here – I’m not taking about climbing a 14ner or running a marathon – I’m talking about the physical challenge of having the stamina to make it thru my shower, or the ability to attend a cocktail hour with friends, or sometimes it is just planning how to make it thru what some would consider the mundane events of a normal work day.  It isn't that simple for me.  I have to consider what is possible and weight out in my mind what I can consider taking on and what I have to let go of.  I have to prioritize simple life tasks to even consider getting thru the day.  An honest assessment usually means, 99% of the time, that I scrape by with the bare essentials of the day and don’t have anything left to give the extras like meeting the girls from work for a quick gab after work, or a quick stop to pick up something from the store, or a simple load of laundry before bed.  Those things take a back seat to me just trying to get by….just trying to make it back to the bed where I can collapse…and start preparing myself mentally to do that all over again tomorrow…and have a positive attitude about it. 

What sometimes eludes me is understanding that people really don’t get it.  I’m guilty of it myself.  I have a good couple days and suddenly I forget that I struggle to just get by most days.  Of course people who have their health aren’t going to get it. 

The hardest part for me is that I desire that understanding and validation that most people can’t give.  In the majority or cases, I don’t think that they don’t care – they just don’t understand.  My husband cares.  Deep down, I know that…but I also know that he just doesn't get it.  The difficult part is figuring out how to help him understand without feeling like I’m telling him what to do. 

And so it goes that I have to dig deep and console myself and find a deeper well of inner strength to propel myself on because no one else is going to do it for me.  No one else knows the extent of the personal hell that I live daily…and I wouldn't want them to!  

“But, You Are a Beautiful Person on the Inside.”

((sigh))

There are few strings of words, while individually benign, that can cut so deep, cause more pain or leave such lasting scars than these nine words:

“But, you are a beautiful person on the inside.”

No matter what the intention, the simple fact is that the implication is that someone is not physically beautiful.  I contend that you can’t string those words together without knowing that you are causing pain.  The words slice quick and deep and once they’ve cut, there is no way to ignore it.  Just like a serious wound the effects are long lasting and rarely completely erased. 

This recently happened to me.  Someone I didn’t expect to lash-out, struck me with this statement.  It was so painful to hear that I actually flinched.  I felt as though someone broke my heart into two pieces and then slugged me in the gut.  It was in the midst of a serious conversation and I find that I keep trying to justify the statement for them.  I keep telling myself things like:  “In the context of the conversation, they were just expressing their love of who I am as the most important thing.” 

Shortly after this statement was made in our conversation, I was asked to share “what I wanted.” The first thing that popped into my mind and out of my mouth was, “I can tell you what I don’t want…I don’t want to be the girl who is pretty on the inside.”   I felt the tears well up and sting my eyes and choke my throat and I watched as the realization of what those words had done to me resonated.  Honestly, there was less gratification from calling them out on the pain they caused me than I thought there would be.  The truth is, I was really hurt…still am. 

In this same exchange, I was devastated to find out that I was “pitied!”  That was a bitter pill to swallow, too.  I don’t want pity.  I want empathy.  To me, pity denotes that a person feels superior to me and I can’t equate my misfortune with this disease that I have no control of to mean that I am less of a person than anyone else.     

As I reflect on this awful disease and what it does to a person, I can’t help but wonder how it escapes another empathetic human being’s attention that I am already devastated as it is from the effects that I can’t control.  When I hear the frustration in the voice of a loved one and statements of rage like, “This disease sucks!” I am almost dumbfounded by the insensitivity.  REALLY?!?  You don’t think that I know that?  “I” am living this F’d up life.  The pain, the anguish, the destruction of body and soul, the helplessness, those are MY realities.  I am quite clear how badly this disease sucks.  I’m living it!  EVERY SECOND and I am offended and astounded that you think you are worse off than me in this whole scenario. 

Now, I want to be clear that I do not doubt that it is supremely difficult to support and love a Cushie.  I don’t have any delusions about the fact that we are miserable, difficult people who are caught in a special hell on earth.  This disease tramples the self-assurance of the most secure people.  It robs hope from the most positive of individuals.  It takes all of what we have and keeps on sucking the life right out of us.  But it is happening to ME and I resent that anyone who isn’t walking in my shoes can complain or question what I am enduring. 

I am rambling here, but the point that I am so desperately trying to make is …well…I don’t know that I am trying to even make a point.  I’m just expressing the pain and hurt that I can’t seem to let go of.  The logical side of my brain tells me that I am uber sensitive to this kind of emotional pain as this disease wreaks havoc on my hormones and body.  It is a slippery slope from keeping my head up and maintaining to the pits of despair.  It is within those pits, in my moments of pure exhaustion…the moments that I have no resistance to the negative effects of this disease on not only my body, but my mind, heart and soul.  I find then that I can easily focus on what I’ve lost and the enormity of what I still could potentially lose...And I am sad. 

I hope that others around me can continue to show me empathy…not pity...and know that I am (with or without this disease) a beautiful person inside and out.  

Most of all, I hope that "I" can remember that and show myself some empathy!   

   

Heart-Ache – Triple-Fold - RIP Diana, Kate & Samantha – Be free of Cushing’s and the ties that bound you.

I hate that this post follows my last post immediately, but once again, we are faced with tragic loss.    This week has been one of great tragedy.  As a community, we’ve said goodbye to another 3 people. 

I’ve been tossing this around in my mind as is common, looking for an answer, asking why? and fighting my to keep my own fear at bay. 

But here’s the thing:  It is scary.  It is heart-breaking.  I can’t change it.  It wasn’t something I did or brought on myself.  It isn’t something I can wish away or grow past.  It is my life.

What I can do is this:  I can support others who are struggling.  I can keep looking for answers and questing for help.  I can fight and I can treasure each moment that I do have.  I can live for the simply joys that are my here and how.  To do less would be a dishonor to those who have passed away fighting. 

So, with love and light and thoughts of peace, I mourn the loss of the precious Cushies that are no longer with us…and I flip this disease the bird. 

I can’t fight anyone else’s battles – I mean, come on!  Somedays I am barely fighting my own.  I can’t take away the pain.  I can’t soothe the frustration and angst out of anyone else’s life, but I can enjoy my here and now.  I am more resolute than ever to honor those who fight daily. 

I can continue to raise awareness.  I can continue to urge people to not give up.  I can continue to share what I’ve experienced in hopes that it may help just one person feel not so alone.  I can be grateful.  I can practice gratitude in my life and cherish what I do have. 

I have a friend who invited me to be part of a “Gratitude Email Group” a few years back.  I was the outsider, knowing only him, his sister and her husband.  The idea was simple.  When having a rough day, people were encouraged to reply to all in the email chain and come up with 5 things they were grateful for.  If you were so inspired when you received the message, you could reply all and add you own list.  The idea is that it isn’t required, but when feeling low, there was a place to go to take a deep breath and focus on the good – leaving the bad alone to settle.  It seemed like an odd thing at first, but, something amazing happened.  There was anonymity in a blank email to begin with, but somewhere along the line, bonds were made, miles where bridged and relationships were forged by people who had never met before. 

Gratitude in the face of tragedy can be powerful…and so, tonight, as I mourn the loss of the week and face my own fears, I am taking a moment to be grateful.  If it feel right to you, I hope you will do the same thing.  

Today I am grateful for:

1.   My husband, who continues to be my rock.

2.  The unconditional love my dogs give me – I sure would like to be the kind of person my dogs think I 

3.  The smell of rain and the soft breeze blowing my curtains.

4.   My family.  I am lucky to have had a childhood of storybooks! 

5.  Clean sheets.  I can’t wait to slip in them and rest my head and heart tonight! 

BONUS - I am grateful for the love and concern of true friends.  

RIP Diana, Kate & Samantha – Be free of Cushing’s and the ties that bound you.  

http://youtu.be/vxSAhLyKVqw

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.