Day 30 of Cushing's Awareness: April showers bring May flowers.

Today is April 30th and that means that I have completed the 30 day challenge to help raise awareness for Cushing's. I am really glad that I have been able to share my journey with people and I really hope that somehow my story has made an impact or that it will make an impact on someone.  When it comes to your own health please remember that no one knows your body better than you.  If something is wrong and you feel it, please believe in yourself and trust your instincts.  Never give up on finding answers. Sometimes the path to finding those answers is a very long and bumpy one, but with strength, courage and a whole lot of research you can and will find those answers.  It's also so important to have a good support system in place.  It's not always easy for those who are living on the outside of an illness to understand the daily struggles we have, but it's important to surround yourself by people who care and believe in you.

I can't speak for everyone, but I know for the majority of my illness my family has been very supportive of me. Initially when you bring up a rare disease to your family they don't want to believe that it is even in the realm of possibilities.  Cushing's is one of those diseases that most people just don't understand.  We can eat a fat free, no carb, low calorie diet and exercise and still gain weight.  While trying to exercise we could damage our bodies even more because Cushing's destroys muscle and bones.  I managed to break my foot by stepping on a piece of dog food.  Who breaks their foot on a piece of dog food?  That is just one of the many things this disease has done to weaken my body.  

This top 10 things to not say to someone with a Chronic Illness started floating around Facebook a year or so ago.  My illness is actually caused by stress, so number seven is quite laughable.  Cortisol is a stress hormone, so it is indeed stress.  As for number five, it actually is/was in my head! Just thought I would share this because you really do hear some of these things when dealing with a chronic illness such as Cushing's Syndrome.

In July I am looking forward to going to something called The Magic Convention which is hosted by The Magic Foundation. It is being held in Lombard, Illinois which is a suburb of Chicago.  My Neurosurgeon, Dr. Ian McCutcheon will be speaking at it along with several well known Endocrinologists and last but not least a dear fellow Cushie who will also be speaking and is a Clinical Psychologist. Dr. Friedman has been a guest speaker for The Magic Convention in the past, but will not be there this year.  I am really excited to hear them talk about Pituitary disorders that effect Adults such as Cushing's, Adult Growth Hormone Deficiency and Panhypopituitarism.  However, most of all I am looking so forward to meeting some of my fellow Cushie friends who I have gotten to know and love over the years.  One of my dearest online friends is coming all the way from Canada and I cannot wait to give her the biggest and most gentle bear hug on earth!  These are my people, the ones who understand every little thing I am going through and it's something that no one else on this earth can fully understand except them.  I just can't wait to be in a room full of freaks like myself and feel NORMAL for the first time in my life. I think I'm more excited to meet them and go to this convention than to go to Disney and that is saying a lot, folks.  

Thank you for sharing in my journey and I hope you will continue along with me as I update on my progress.    One day I will be rid of this disease, but I will always carry the scars of my battle.  

Let's just pretend she is singing Mrs. Zebra. ;)

Day 29 of Cushing's Awareness: Why I blog about my journey

When I decided at the last minute to join in with several other Cushie's to do the 30 day challenge of blogging about Cushing's to help raise awareness, I had no idea how much time and effort would go into writing and how much it would grow to mean to me.  I've spent hours every day thinking about what to write, reading my own medical records, looking up information and just reliving my own journey that has gotten me to this point in my life.

I don't know why I decided to do it, but I'm glad I did.  It's been very therapeutic for me to write it all out.  I've been meaning to do it for a long time, but just never had that fire lit under my butt that got me motivated enough.  I figured that writing about my journey may someday help someone else who is on their path looking for answers.  Maybe it will encourage someone to never give up, keep looking for answers or just help someone to understand they are not alone in this.  Cushing's can make a person  feel very isolated, but with the power of the Internet it has brought so many of us with this "rare disease" together.  We are able to share our own trials and tribulations and also mourn the losses of those that our community has lost.  This blog has also helped my family and friends to better understand what it is I have been through and continue to go through on a daily basis.  Every day I wake up and my goal is simply to survive the day.  One day I hope and pray that I will be able to plan so much more than that, but for now I am grateful that I am alive and still able to function as best as my body allows me.  It's not as much function as I'd like, but I know there are many out there that are dealing with so much more than I am.  It isn't easy being me, but it's the only me that I know.  I embrace it, but I will always strive for more.  I was born to fight and fight I shall.

If this disease does happen to defeat me, it is nice knowing there will be a piece of me forever left on the Internet and that some day my children can read it and know that I never gave up.  I fought to get better and no matter how big the obstacle I kept on because I do not want my children to grow up without me.  It's amazing how powerful love is.  There is nothing in this world that can defeat it.  I know that sounds cheesy, but it's my love for my family that keeps me sustained during my darkest hours.  It brings me back out of the darkness and allows me to see that there is always a reason to fight and always a reason to hold on to hope.

If this blog has touched just one person and helped them to better understand what Cushing's is then I feel that somehow my misfortune has a purpose.