Raising Awareness - Awareness Saves Lives

In the weeks and months just after my surgery, as I learned more and got answers to things that I should have had prior to my surgery, I began to understand the importance of AWARENESS. 
 
It was painfully obvious to me that there needed to be more information out there.  It was heart-wrenching for me to think of someone else going through what I was going through - alone.  I was fortunate to have my husband and my mom and a handful of people that were empathetic.  But, it was clear that many people didn't have that.  So many struggled for answers and were alone in their quest for answers.  They didn't have a support team and then when they got to a doctor, the very professionals that were supposed to help them, they were ridiculed, taunted, misunderstood, and usually ignored.  It wasn't right, but it was the norm. 

I didn't understand what I had done to deserve the twist in fate that I was living, but what was become clear to me was that I could make a difference.  I could raise awareness.  So in the fall of 2005, I set out to raise awareness. 

Being at home, I became familiar with many afternoon talk shows.  It occurred to me that there was a wasted platform there.  I became fond of the Ellen show.  I appreciated the positive feel that it had and I was in desperate need of that in my own life at that time.  So, I wrote to every talk show that I could...multiple times.  I contacted the radio and news stations.  I sent emails to friends and family and contacted my State Senators for support in adopting a National Cushings Awareness day.

There was a large movement that fall by many of us who frequented the boards on Mary O's site (www.cushings-help.com) to contact our Senators and encourage others to do so that April 8, 2006 would be adopted as the first National Cushings Awareness Day.  The 8th of April was chosen as it is the birthday of Dr. Cushing.  - Rather apropos, don't you think?  :) 
So, I continued to reach out.  I continued to raise awareness to the best of my abilities.  I felt like it was the right thing to do.  To my surprise, one of the local news stations I contacted reached out and did a story about Cushings.   Here is the news spot that aired in November of 2005:

 

 

This is a copy of the email that I sent to the media:

November, 2005

Dear local Omaha News Team,  

 I feel compelled to write you to ask for your assistance in helping raise awareness for CUSHINGS DISEASE.  We, (me and many of the members of the organization that I am a member of - cushings-help.com),  are currently petitioning and working with our Senators throughout the U.S to adopt a Cushing's Awareness Day.  As I was personally diagnosed with Cushing's Disease this past May 2005, this endeavor means so much to me and my family. 

 I will give you the cliff notes of my experience, but would be happy to provide you a copy of the letter and information, including photos,  that I personally have sent to Senator Ben Nelson and Senator Chuck Hagel.  I am also contacting Contacting Congressman Lee Terry to ask for his support.  Many such letters will be received by Senators throughout the United States from other "CUSHIES" as we continue to attempt to raise awareness.   

About a year ago I began to get sick. I saw my doctor repeatedly over a six-month period describing a "laundry list" of symptoms that as far as anyone could tell had no relation, and unfortunately became worse and worse each day. At the onset of the worst of my symptoms, I had just turned thirty, but within six months, (April 2005), I was so sick that I was acting like an eighty year old. I could hardly move. It all climaxed when I ended up in the E.R one afternoon at work thinking I was having a heart attack. Thankfully, it wasn’t my heart, and a whole new set of testing began. Within three weeks, I was diagnosed with CUSHING’S  DISEASE.  Shortly thereafter, my health rapidly declined. I woke up one morning and couldn’t see. It was like looking through a waterfall. Within the week, my physical condition declined to the point that I was unable to walk from the bed to the kitchen without having to lay down and rest. I could no longer lift my arms or shower or do the simplest of everyday tasks. Due to my quickly declining health, surgery was scheduled quickly. On June 10^th, 2005, I had surgery to remove a tumor from my pituitary gland.  The recovery has been slow, and difficult, but we are hopeful. We are learning to be flexible in our lives. Before I got sick, Doug and I had planned a small destination wedding this fall with close friends and family in Mexico. Our plans obviously needed to change. Our focus changed greatly as my health declined. I have been so blessed to have the support and love of family and friends. I’ve also been so fortunate to have doctors that were familiar with CUSHING’S disease. It is so rare, and therefore, many people go undiagnosed and suffer for years. Untreated, the disease eats away at every part of your body. It is a painful disease that attacks more than just your body. It dissolves your self-esteem. Coping can be all but impossible. Add to that the frustration of it being foreign to many in the medical profession, and you will find a small group of people that suffer quietly.  That is why I am writing you. As with any disease, AWARENESS is the key. This disease affects approximately ten to fifteen in every million Americans. Few people have ever heard of CUSHING’S disease, and fewer know much about it, but it affects so many lives. Those who have CUSHING’S disease and those who love us "CUSHIES," (as we are affectionately called), need to know there are people out there that can help. Personally, I was at my wits end with my doctors in the beginning before anyone knew what was wrong. I would see a doctor each time a new symptom would arise and would leave the office feeling belittled and stupid, and yet, still as sick as before. I was lucky though. Many people have endured years of tests and illness, yet, still have been unable to receive a diagnosis. Even more heart wrenching are the stories of young children, their lives quickly devastated by this disease. Sadly, their parents and our loved ones who support us suffer as well. It isn’t easy to watch someone you love suffer. I joined a support group that is hosted on line by a fellow "CUSHIE," Mary O’Connor. This website provides information, and chat boards that have become a lifeline to me, and others like me. You can check it out for yourself at www.cushing-help.com. There you can read more about the disease and even check out my and other’s bios.

Despite the difficulties that I am having in my recovery, I am constantly reminded that this life is so much bigger than me. It occurred to me that there have been so many events in the past couple years that have caused pain and suffering, so many images that will be with us forever. Whether they be acts of god, events caused by hate, or personal battles that we fight, none is more tragic than the other. The result is loss, pain, suffering and hurt.  My thoughts and prayers go out daily to those "effected" by any such events. In contemplating this, it occurred to me that each of us, not just Americans, but each HUMAN on this earth should feel "affected" by the events that happen around us. That is what makes us human, and HELPING is what makes us KIND.  No matter what the event or cause, it seems to me that education and sharing information is vital to help prevent the recurrence, or at least help ease a disastrous outcome. By each of us sharing our lives, our thoughts and watching out for each other we stay informed and reminded that we are loved.  

As a news team, you have a powerful position. What you do and say makes an impact on so many. It is because of this that I humbly ask if you would be willing to take a moment and help make people aware of CUSHING’S disease on a news broadcast.  It is my hope that you will maybe reach one person that is suffering without knowing why and motivate them to reach out. Or maybe you will touch the life of a "CUSHIE" that is "down-in-the-dumps," giving them a smile to know that there are people who care. Or maybe it will motivate someone in the medical profession to step up and promote education amongst his or her peers. Or maybe it will comfort someone like the love of my life, Doug, who selflessly continues to support me and make my health the center of his world. Or maybe it will give someone else who is suffering the push they need to stand up and ask for help.  

As a survivor, I would be happy to answer any questions that you may have about this disease I hopes that it will assist in spreading the word and raising AWARENESS!  Please feel free to contact me via this email address or via the telephone contact information listed below.   

 Thank you for your time.