Let's give this a try...

In an effort to find a hobby, several people suggested that I start a blog. I don't know that anyone will be interested in what I have to say, but we shall see. And because I can't sleep, no time like the present to start! Here is my brief story as an introduction.

For as long as I can remember, I wanted to be a teacher. I coerced my sister into playing school, along with my dolls and stuffed animals as a young child. Whenever I was asked what I wanted to do when I grew up, my answer was always the same - be a teacher. I've always loved kids, been called a kid magnet and a baby whisperer. I went to school for my undergraduate degree in Early Childhood Education. After graduation, I looked for a job and paid my dues in the job search process. I finally got my dream job as a preschool teacher in 2009 and loved it. I was also working on my master's degree in Early Childhood Special Education and was able to teach special education while working on my degree. Everything seemed wonderful and I was happy.

Then came the day that I will never forget and the day that changed my life as I knew it forever. After years of searching for answers to my seemingly random symptoms, I was diagnosed with a condition called Ehlers Danlos Syndrome, EDS for short. It's a genetic connective tissue disorder that causes my body to produce defective collagen and so it affects anything that is connective tissue, which is just about everything in the body, especially the ligaments and tendons. My ligaments are like taffy- they stretch and then don't go back to normal, which leads to unstable joints that pop in and out of place multiple times a day and multiple joint surgeries to stabilize joints. I have a few analogies that seem to help people understand EDS a little better. One, I'm what would happen if Humpty Dumpty and Gumby had a kid. Two, I'm like Elastigirl from The Incredibles. Three, I'm like Scarecrow from the Wizard of Oz, in the scene when all of his straw is pulled out and then haphazardly shoved back in. I also have developed multiple co-occurring conditions over the years. The most recent condition related to EDS that I had was Chiari malformation and cranio-cervical instability. Basically, my brain had shifted and slumped and was compressing my brainstem and my neck was unstable, turning me into a bobble head. For treatment, I went to the experts at the The Chiari Institute in New York and had posterior fossa decompression and crania-cervical fusion from the base of my skull through C2 on August 22, 2013. I felt amazing for several months and then things started to go downhill again. But more on that later.

The doctor that diagnosed me told me that yes, I had EDS, I needed to quit my job, go on disability, and come back if I have a new problem, because there was nothing they can do for EDS. I was 25 years old and my dream job had been taken away from me. I was heartbroken and devastated. But I knew that my life couldn't be over, just the life I knew.

I decided to return to graduate school and was incredibly blessed to be admitted to a wonderful program with incredible faculty and learned more about myself than I ever imagined. I completed my thesis on adolescents with chronic health condition, which was eye opening and very rewarding. After graduating in May 2014 with my master's degree in Counseling and Career Development and was incredibly fortunate to be hired as an academic advisor and instructor for the same department at my university that I interned with and am very blessed to work with incredible coworkers and supervisors that have been an incredible support throughout all of my health challenges. Although I can't teach little ones anymore, I now have the opportunity to teach the next generation of teachers.

Somehow, I ended up becoming the "chronic illness" magnet for students at my university. I quickly realized the need for support for college students with chronic health conditions and founded a student organization for students with chronic health conditions on campus, which has blossomed and flourished far beyond what I had imagined would happen. I feel incredibly blessed to work with these wonderful, brave, resilient students. They inspire me every day.

One of the reasons I went into teaching was to make a difference in the world, as cheesy as that sounds. Living with multiple chronic health conditions has opened up many doors and avenues to do this in ways I had never imagined. My passion in life has become to educate others about what life is like for people living one or more chronic health conditions, raise awareness about this type of life and about "rare" diseases or conditions. With our student organization, we have begun the process of educating as many people on campus and initiating change to make life better for these students.

Instead of covering the latest Kardashian scandal or which football team won a game, the media should be focusing on helping change the societal perception of what chronic illness looks like, especially when the condition is invisible, and the person doesn't look sick. The medical system is seriously flawed. Those of us that are the sickest have to fight the hardest to be taken seriously, and we generally know way more about our conditions that our doctors do. Society judges us, like when I get glared at for using my handicapped parking pass, sees us as lazy, crazy, and/or drug seeking. Something must change. Something has to change. And my hope is that I can do my small part to help this happen.

If you want to know what it's like to live with a chronic health condition, check out The Spoon Theory by Christine Miserando. It's the best way I've found of explaining life with a chronic condition to others. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

To close for now, why the zebra? Why fight like a zebra? In medical school, future doctors are taught that if you hear hoofbeats, assume it's a horse, meaning problems and diagnoses are usually something simple and there isn't a need to look outside the box. We say, sometimes hoofbeats are a zebra. So the symbol for EDS is a zebra, which explains why my house and office are covered with zebra print and zebra stuffed animals and anything else I can find with zebras on it. Luckily, I have found an incredible online zebra herd to help me cope with the challenges that come with living with so many "rare" conditions. So the next time you see a zebra, maybe for a brief second you'll think of EDS and I will have done my job of raising awareness.

For more information about Ehlers Danlos Syndrome, visit www.ednf.org
For more information about Chiari malformation, visit http://www.conquerchiari.org/index.html

Feel free to ask questions, I'm not shy about any of my medical conditions and if it can help someone else, then maybe my trials and challenges will have a purpose.

I love quotes, so will do my best to share my favorites at the end of each blog post.

"Friendship is born at that moment when one person says to another: What! You too? I thought I was the only one." CS Lewis