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!