Live Laugh Love: Bonnie’s Journey with EDS

zebra-1472159-640x480Please welcome my childhood friend, Bonnie.  I have known Bonnie a long time and followed her as she struggled to find the answers to her complex medical issues.  She is one of the most positive and genuine people I know.  Nothing keeps her down!  She is truly an inspiration.  Live Laugh Love is Bonnie’s motto.  I think it describes her approach to life well.  Thank you for sharing your story, Bonnie!

Hi, my name is Bonnie. I am so honored that my great friend of many years, Kim, asked me to write a post for her blog, Deconstructing Doctor. I am here to write about my medical struggles through the years. If you have been reading and following Deconstructing Doctor you read a couple weeks ago about how Zebra’s are rare but they do exist. I am a Zebra Warrior. I am that patient that keeps her doctors and medical team up at night tossing and turning.

Can’t We All Just Get Along

I have spent most of my life asking, why do I have such complex medical issues? There has to be a reason and a cause for all of this. Just as I was frustrated looking for answers, I could tell that my doctors were even more frustrated. There was nothing that they wanted more than to have answers to the questions that I was asking. They felt bad for me, but I felt just as bad for them. I was so glad to have such a loving and caring medical team cheering for Team Bonnie.

As the years went by my medical issues kept getting more and more complex. Finally one day I said to myself I guess I better just accept this for what it is and stay positive and make the best out of this crazy adventurous roller coaster ride I was on. I knew in my heart that I had the best medical team caring for me and they were doing the best that they could.

It was around the 2nd week in February of 2015 when I was in my Electro-Physiologist Cardiologist office waiting for my doctor to check my pacemaker. I call it the “Kick Starter,” named after Motley Crue’s song, Kick Start My Heart  (ha ha!!). My heart doctor listened to my heart and lungs like he always did.

He paused for a second and says, “Bonnie I don’t know what made me have this epiphany, but I think I KNOW the cause of your complex medical issues.”

I was quiet for a few seconds not sure If I was hearing this right. “WOW, Dr. W, this is such wonderful news! What is it?”

“I believe, Bonnie, that you were born with a rare genetic connective tissue disorder called Ehlers Danlos Syndrome Type 3 (hypermobile). The only way for us to know for sure if this is the cause of your problems is to have you see a Geneticist at the University of Miami. Can you please give me some time to do some research?”

“Yes of course, doc, take all the time you need. Thank you, thank you, THANK YOU, Dr. W!”

Live  *  Laugh  *  Love

It was about a week later when I got a call from my doctor’s nurse giving me the information I needed for the geneticist appointment. The day finally arrived for my husband and I to go see the geneticist. I truly felt that it was going to be a good day with lots of answers to the many questions my doctors and I have had all these years. The geneticist, Dr. T, asked lots and lots of questions, examined me, and confirmed that I have EDS type 3, an inheritable genetic connective tissue disorder that I have had since birth.

I most likely inherited the disorder from my mom. After the geneticist finished explaining everything to me so that I understood it all, he answered all the questions that I had. He said, “I am so sorry that you have this debilitating disease that is incurable and there isn’t really much more that we can do for you.”

Dr. T gave me a hug. “I am so sorry that you have this, honey. I wish there was more I could do for you.”

I started to cry tears of joy. I was by no means crying because I was happy about being diagnosed with having EDS! I was happy that FINALLY this crazy medical mystery that I had lived with for so long was now over! My doctors, my medical team, my husband, and I could now move forward knowing the cause of my struggles. We now know what we are up against.  Finally, the medical mystery is over. I cannot begin to tell you the peace that I felt on that day. image1

I know you are probably reading this wanting to know exactly what is EDS.

EDS is a connective tissue disorder that affects the way your body produces collagen. Collagen is the glue that holds your body together. Having “bad” collagen affects your skin, blood vessels, joints, tendons, ligaments, and organ walls. When the collagen is faulty, it can lead to loose joints that dislocate often, soft skin that tears and bruises easily, intestinal and heart issues, poor wound healing, and widespread scarring.

Probably a better way for you to understand it is: you are made with Gorilla Glue and I am made with bubble gum (haha). As you can tell, this has been quite a wild adventurous roller coaster ride for me.

I will be forever grateful to my husband for being by my side through this journey. I don’t know where I would be today if it wasn’t for all the love, support, and prayers that I received and continue to get from my husband, family, friends, my doctors, medical team, the EDS community, AND to those of you that took the time to read this post Thank you. You will forever have a special place in my heart.

Photo credit:  Ned Benjamin


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