The story of Liberty
Hello to all,
How many if you have doctors that say “you’re special”? How many of you can’t even remember what it was like to be able to do everything you wanted to? Now answer this, how many of you are at the point of accepting who you are and what you CAN do?
My name is Liberty and I am a “special” case just like many of you. I have Ehlers Danlos Syndrome, this is a rare connective tissue disorder where I can and have dislocated almost every joint in my body which results in severe chronic pain and MANY limitations. I also suffer with Fibromyalgia, which isn’t quite so rare, but certainly adds a great deal of pain and suffering to my every day life.
It all started when I dislocated my right shoulder when I was 14 in a swimming competition. I was whole heartedly into sports, not only did I enjoy them, but I was good at them too. My shoulder started to dislocate more frequently which long story short, resulted in my first surgery. The procedure seemed to help for a little while, however, my left shoulder started to dislocated and that became surgery #2. My orthopaedic surgeon was quite surprised to see me yet again when I told him that my right shoulder has torn through what he did and dislocated once again, (and might I add, it was excruciatingly painful). He didn’t seem to believe me and started to suggest that all my pain and dislocations were psychological and that maybe I needed to see someone else. I was heartbroken being told that I’m faking my symptoms. My parents however wouldn’t take such accusations and then brought me to Sick Kids hospital for Genetic testing when I was close to turning 17, so I knew I wouldn’t have much time to find answers there as their cut off age is 18.
I was then diagnosed with Ehlers Danlos Syndrome (EDS), my doctor could see how flexible I was, which hyper mobility is a character of the condition. I then started to dislocate my knees, fingers, hips, and my jaw ( which is a nasty one).
Consequently my number of trips to the hospital increased to a number that I can not even rememeber and my outlook of my future started look very dim and very uncouraging, especially since I was told that this condition has no cure since it is a genetic mutation of a gene.
Later on down the road I tried to pick myself up and to start a blog to reach out to many others like me that suffer with not only EDS but other rare disease too. Things like this not only have a negative influence on yourself but it hurts everyone else around you to see you suffering, and to feel so helpless and not knowing what to do. The blog helped me, and started to help others too which was great, I started to try and adapt to my limitations and was able to graduate college.
I was in such a good place, even though I had severe pain everyday which was controlled by strong narcotics which, over time, I built a tolerance to. I then decided to have surgery #3 on my right shoulder with a DIFFERENT surgeon. He had good intentions but, the surgery still failed which meant all that pain and recovery time was a waste, yes, it was a huge disappointment.
Since my family and I decided that maybe surgery isn’t the way to go due to its low success rate, we tried to see multiple specialists in different fields (rheumatologists, physio, orthopaedic surgeons, neurologists, etc) to help learn to manage with my pain and dislocations.
I then found my 3rd pain management clinic which so far is helping me get through until tomorrow. However, I’m suffering still with more pain every day, trying different narcotics/opioids to just take the edge off of things. I try very hard to stay positive but I won’t lie to you, I have been really low, I have wished for my life to be over with so I don’t have to g through this pain anymore, but I love my life and everyone in it way too much. I have a great support team within my family and friends and I’m forever grateful that I’m blessed to have them.
My symptoms are progressing and it is hard to keep up but I have high hopes and I believe in having a pain free day some day. I hope we can raise awareness for EDS and I pray that the same happens for all of you!
Please reach out to me by using my blog,
runningwiththezebras.wordpress.com
Stay strong everyone!