A Question Posed -

Today I received a personal message from a fellow Cushie who asked me an interesting question:

"I was just wondering if you think that Cushing's Disease changes who you was as a person - personality wise - coming out totally different - and not for the better either?"

Here was my reply: 

Wow! That is a loaded question - but the simple answer for me is 'YES.' Let me try to explain. I hope I can articulate this in a way that makes sense.

I am a totally different person than I was and the part that is the most difficult for me is that I am also a completely different person from who I thought I would be.

Don't get me wrong. I understand that people change as they get older. I understand that life changes people and their perspectives as well. But, I feel, for me, that it is different. I am of the personal opinion that life and life experience adds character to the personality off a person. And life changes people, it is usually for the better.
 
However, I falter when I take into consideration of myself and the changes in who I am as a result of having Cushing's. I don't feel like it has enhanced the person that I am. I don't feel that it has given my personality quirks that could be considered character. I feel that Cushing's has brought to the forefront and developed in me some personality characteristics/demons that I would otherwise have not faced. And of course, when standing face to face or shoulder to shoulder with demons, it only makes sense to me that some of the ugliness rubs off onto someone. Don't get me wrong - I'm not trying to justify the "ugly." I just think I have to recognize and admit that it is there.

When I look at who I am today, I undoubtedly see strength. But I also see rough edges and hardness, too. I see tattered raged edges that can no longer be smoothed out. I see someone who is, plain and simple, lacking in patience, empathy and compassion. I see someone who gets frustrated easily, doesn't put up with much and who simply doesn't want to bother herself with putting out the effort when I know there will be nothing in return. Shoot - Sometimes, I don't put myself out there or invest time and energy when I know there would be return...and the only reason I can conjure is I simply don't want to or don't care.

The worst part, as I mentioned, is that I see these things about myself and I don't like them, but I don't want to or simply can't find it in myself to want to change.

Cushing's is a funny thing. For most of us, it attacks us and steals our lives away. It attacks our physical bodies and then deprives us of the hormones that we need to repair our self esteem and balance our emotions. Cushing's is pure evil.

There are bits, of what I consider my eternal soul, that sometimes peek though the sludge that is Cushing's in my life. These slivers of who I was, are strongly rooted in optimism. While they are minute fragments of what once was, they are strong. Somehow they keep me tethered to the last little bits of who I was - of who I thought I would be in life. I do believe that is where my strength to go on comes from. I know that my hope springs from that part of my soul. I rely on those little fragments to keep me going. It is like a little glimpse of 'me' that I treasure. At the same time, that little glimpse angers me, because I can't imagine the amazing person I could have been if my destiny would not have been Cushing's.

All that being said, I like to think that I am supposed to learn something from all this. Maybe it is just a delusion that I like to indulge, but I like to believe that I still have the opportunity to grow from this - if only I can figure out how. And so, the torture continues.

My fear in all this is that I will alienate all those who I love as a result of simply being an ugly person in the meantime. I would be devastated to lose my husband. He is so important to me and yet I worry about him just giving up and walking away from all this crap. And the worst part about that is that I wouldn't blame him. For goodness sake, I want to simply walk away from this misery EVERY day of my life!

So, that was a bit a rant.

HOW ABOUT YOU? 

I'm Verklempt - I Need a Moment

My health has recently taken a severe change - for the worse.  I'm sure the change in pace (a recent 17 day business trip to Florida following a very stressful time at work) didn't help, but in all honesty – it has been coming – like a freight train barreling down the track that I refused to acknowledge.  Avoidance = non-existence, right? 

Somehow I have been getting by with that sentiment.  Or at least I am getting very good at deluding myself into believing that.  It seems however, that I am really having problems getting back on track.  Not only am I facing some severe physical symptoms, but, typical of a Cushie on a hormonal tirade, I am unable to keep my emotional self in check.  I am all over the map.  “From Exasperation to Tears And Back Again In 6 Seconds” (That would make a great book title!) 

I know my immune system was/is weak, and I've been ignoring so many health issues for far too long. And so, the question that inevitably arises is - WHY?  Why would someone, (me), who advocates awareness, not giving up, etc. practice avoidance? 

Under some examination the answer seems pretty simple - Selfishness.   I have simply been selfish.  I want to do what I want to do.  I want to live a life that "I" control - not an illness.  I want to go and do freely and not think about pain, pills, tests, doctor visits, insurance, payflex, out of pocket expenses, diagnosis, bad days, terrible pictures, etc.  I refused to focus on the so many things that I couldn’t/can't do. – So many things that I feel have been stolen from me. – So many "can'ts"…so many "if onlys"...so many "What did I do to deserve this?...and whatever it was - God, I'm so very sorry!"  I've turned my back on all of it because I simply - selfishly - was flipping my reality the proverbial bird - Sticking out my tongue (if you will) and yelling, "You can't make me!"  

I've become masterful at this avoidance game.  I am queen of my pretend “Everything is Okay” world.  In this pretend world, it isn’t fatigue and muscle pain that made me avoid skiing this season – It was time and money.  Oddly enough there was time and money for my husband to go.  In this pretend world, it isn’t a deficient immune system that has made me susceptible to illness after illness over the past year – It was all the sick people around me.  Oddly enough there has been no epidemic outbreak in my area.  In this pretend world, it isn’t hormones that have prevented us from having children – It was just not “meant to be.”  Oddly enough this cliché answer simply doesn’t sit well with me.  In this pretend world, it isn’t my body attacking itself and deteriorating muscles that end hikes in the mountains or strolls on the beaches of Miami – It was just the fact that I my week had been hectic and I needed to rest.  In this pretend world, it isn’t brain fog or migraines that have zapped my creative inspiration in painting and photography causing me to cancel my first ever public art show – It was just lack of time.  In this pretend world I didn't have to face the real issues.  There was always an excuse and somehow the monster that is Cushing’s had been willing to lie in the corner. 

But here’s the crazy thing about monsters in the corner.  They aren’t really docile.  They aren’t really contained.  They are simply “lying in wait” and at some point, they will require…no…they will demand your attention. 

Now, I am finding myself in a position of duress.  My monster has risen and has in turn, backed me into a corner and is demanding my attention.   

The worst part about this is the guilt that comes with this realization.  Yes, it is my fault.  My weakness and desire to just have some symbolism of normalcy has clouded my sensibility for quite some time.  Sadly, that means that I have not only found myself in the midst of some dire symptoms while visiting the depths of despair, but I have drug my husband down with me.  As much as I feel punished, I realize that I have punished him so much more severely.  I have, by means of my selfishness, and pushing the limits so much further than I should have, I have forced him into a place of uncertainty and anguish while he watches me face the consequences of my selfish action. 

 

Selfish Bitch! 

Cushing's Awareness Day - April 8, 2013

April 8th  – National Cushing’s Awareness Day 2013

 Well, my day didn’t turn out exactly as I had envisioned.  You would think that I would be totally used to that by now in my life.  I mean, seriously – I can’t really think of any examples of things that have gone as I expected in the past 10 years.

 As some of you know, I’ve been putting off seeing a new Endocrinologist here in Denver.  I’ve been here for two years, and I’ve neglected my health.  I don’t have a good reason for procrastinating.  I knew I had another tumor when we moved here and I knew I needed to find a new health care provider – I just didn’t.  My health has been slipping and I’ve had 100 reasons to go, but I simply didn’t want to do it.   I didn’t want to be consumed with feeling bad.  I didn’t want to be consumed with medications.  I didn’t want to be consumed with all the tests that, no doubt, were going to have to happen again.  I didn’t want to explain my story to another Doctor that might or might not get it.  I didn’t want to think about another surgery.  I didn’t want to think about Cushing’s.  It was making my sick…LITERALLY!
 
I wanted to have a normal life.  I wanted to think about anything but being sick.  But the reality of it is, this Disease will not be ignored.  The longer I waited, the worse the symptoms got.  The longer I waited, the more prevalent the symptoms have become.  I can see and feel the damage I’ve been doing to my body.  But do you want to know what the worst part was?  I was doing exactly what I encourage others NOT to do.  I was giving up and that is simply not an option when facing Cushing’s Disease.

And so, today was my appointment to meet a new possible care provider.  The irony of the fact that today is National Cushing’s Awareness Day was not lost on me.  Needless to say, caring for myself was not what I wanted to be doing.  I wanted to be talking to the Media.  I wanted to be passing out flyers.  I wanted to charge up mountains in the name of Cushing’s Disease and plant a Yellow and Blue flag in the name of Awareness!  But, that is not what my day was about.

 
Despite our plans, my husband was unable to accompany me to the visit – which was a devastating blow to me.  I’ve come to rely on him so much.  So that was strike one…and that strike was almost enough to make me cancel all together.

Then, this morning I woke to severe pain.  I couldn’t hold my arms up enough to brush my teeth.  I had searing pain on the left side of my chest that brought me to tears multiple times.  I wasn’t sure I could even drive.  As a result I was late.

Despite my anxiety, the appointment went well.  I feel good about the level of care that I am hopeful I will receive.  I was there for 2 hours while they asked questions and took time to really learn about me.  I left with a plan of treatment that begins with quite a few tests.

So, after 6 vials of blood I returned to the valet to get my car.  Upon my arrival, the woman looked at me and said, “Oh, let me get my supervisor.”  (little voice in my head – “$hit!  What now?!?”)  It turned out I had a flat fire.  Not just low…FLAT!  The valet supervisor offered to use his personal air compressor to blow it up so I could at least get to a tire store.  He returned and plugged it in to the power source of the car and it started for a second, and then nothing.  I remembered that I had one in my trunk. (A brand new one that I got as a gift.)  So, we tried that one, but it didn’t work either!  So we plugged it into the car next to me and…IT WORKED!  I was happy, but I realized that meant that there was something wrong with my car.  (argh!)  …But I digress.  So, I carefully and slowly drove to Discount Tire and they fixed my tire that apparently had a drill bit in it.  Keep in mind, I was supposed to actually go into work after the appointment.  Needless to say, that didn’t happen and I had to call my boss and tell her I wasn’t going to make it.

I then took the car to the dealer to see what was wrong with it.  They gave me the run-around, (go figure) and totally stressed me out.  FINALLY, I was headed home - desperate to sit down and still in pain.  However, upon my arrival, I found that my dog had been sick and so I spent another 2 hours cleaning carpets.

So, I was sitting here feeling defeated.  Today I have had to face a reoccurrence of Cushing’s, pain, frustration, a disgusting mess and to top it all off, I did nothing to raise awareness for Cushing’s Disease.  I failed.
 
But then, I decided to touch base in the Cushing's Disease support group on Facebook to see what everyone was up to.  I found messages of support.  I found examples of courage.  I found examples of bravery.  I found my fellow Cushies and so many others embracing each other and the true sentiments of what this day is about and I realized something.  I realized that this group is the epitome of Cushing’s Awareness Day.  This group is a collection of people that are willing to share, support, empathize, love, care, give and encourage freely.  I am so proud to call you all friends.  This disease has ruthlessly taken so much from me, but it gave me all of you!  Cushing’s has blessed me with knowing so many amazing people that I might not have ever come to know otherwise.
 
So, as the day comes to an end in my “neck of the woods” I want to send a special message of hope out to those of you looking Cushing’s in the face as you battle awful symptoms.  I want to encourage those of you who are still looking for answers – Don’t give up.  I want to thank those who offer support – even if you don’t know what to say, it means so much that you are willing to listen.

I am grateful for all my Cushie friends and the contributions each of them make to my life.  A special thank you to everyone for participating and sharing and making our group the great place that it is!
 
HAPPY CUSHINGS AWARENESS DAY 2013!