“Life used to be normal, I was a ballerina, ballroom dancer, played piano, ran track & field, rode my bike, was in a dart league (won first place in provincials) and would race my brother on our scooters for hours. One June, 6 years ago, I woke up with a sore knee. Of course, being so active, we ignored it… until the pain became unbearable and was spreading. By the following January, my life was consumed with painful weekly injections for Juvenile Arthritis, daily pain in at least 5 major joints, out of town doctor appointments and a quick disappearance of what I knew as ‘normal’ life.
I have spent about 11 weeks in the hospital throughout the last 4 years, endured countless diagnostics, ambulance rides, 3 PICC lines, 2 port a caths, IV infusions and as of today I take over 30 pills a day, not including IVs. I have collected over 1000 beads of courage in the last 4 years. Each one represents a test, procedure, poke, day in the hospital, ambulance ride, and much more.
I have to admit, it all happened so fast and I was too overwhelmed to be scared. However, I was confused… we all were. What started with a sore knee developed into much more, within a short time I developed two heart conditions, severe GI issues that caused me to be on IV nutrition, unable to eat, severe joint pain, hooked to an IV pole most of the time, had many stability aids, like wrist braces, leg braces, a cane and a wheelchair for long distances, a stair lift to get to my bedroom and other incidentals to help me with normal day to day activities, like bathing.
I also have severe scoliosis, it is worsening every day, causing my rib cage to turn, my spine is pressing on my lungs and organs. I’m in need of a spinal fusion from my neck to tailbone, that will consist of rods, screws and cadaver bones but that is currently on hold until I am stable enough to do so.
In November 2016, while talking to my Mom my left shoulder dislocated. My Mom was mortified, and well, I just popped it back in, and yes, it hurt pretty bad. Fast forward nearly three years later and I have about 20 dislocation a day, in all of my joints dislocate, including my jaw, hips, knees, ankles, ribs, shoulders and neck (leaving me in a neck brace for a year). There are times when I stand up and my knee will dislocate, I will laugh and my ribs subluxate, my jaw makes a clunk sound as it falls out of place and my hips constantly dislocate, they are my worst joints.
After 4 years of trying to find the causation of all of these random health issues, we finally did. The answer to the ever-growing question…How can a child be healthy one day and sick the next? I introduce to you, Ehlers-Danlos Syndrome! The ‘party tricks’ I used to show off to gross my friends out, ended up being a piece of the puzzle, being hyper mobile (commonly known as ‘double jointed’) is one of the most obvious symptoms of EDS. Upon seeing my first of many orthopedic surgeons, he told me there are two reasons why one would dislocate, either an injury (NOPE!) or EDS…AHAA! He said, after hearing about my history, I fit the mold of the genetic syndrome perfectly.
I spent a long time in awe as I researched it, I was, and still am the poster child for the syndrome. Although this wasn’t a great diagnosis it was still ‘A’ diagnosis. I know what you are thinking, I should HATE EDS, I should be mad at the world. Well, when people doubted my pain and made mean accusations that they thought they were being discreet about, THAT was the worst pain. I was told by the first doctor I saw that nothing was wrong, and it was in my head as, sadly, so many people with EDS experience. Those moments, they are when I hated everything about my journey.
Throughout the last 9 months I had surgery to have a supra pubic catheter placed as my bladder suddenly stopped working which was the hardest medical hurdle I’ve had to go through mentally and emotionally, had to have IV muscle relaxer every four hours around the clock for 4 months, had my third PICC line placed, had surgery to have my first port a Cath removed and a second one put back in, have had countless admissions, traveled out of town to as many as four cities in four weeks all for medical appointments, been poked and prodded, been sedated for multiple procedures, and had more appointments than anyone can imagine.
We are now educated and better able to deal with my very long list of diagnosis and symptoms. I’ll give you a little insight as to what my life looks like now…
For now, I need help doing basic daily necessities like bathing and dressing (thanks to my amazing Mom!). I receive Saline infusions for my POTS (Postural Orthostatic Tachycardia Syndrome) every second day through my port, I have since had the Supra-pubic Catheter removed which was something we were unsure I would ever be able to do, I was able to stop the IV muscle relaxers once that was removed as well, I still have many dislocations a day and most likely always will, I take 30+ pills a day, am in constant pain all over, use a walker and wheelchair plus more.
I am unable to go to attend school, but I do a program where I home school myself, advanced courses. I spend as many hours a day on my schoolwork as my pain allows, even on holidays. We spend a lot of time going to many appointments and travel a lot for medical care, infusions and surgeries. I spend my free time doing calligraphy, art, gardening and watching medical documentaries (I know that sounds weird!) Ever since I could talk, I would say I want to be a baby doctor, even before I was enveloped in my own health issues. Turns out, even when I didn’t realize, I knew that was my passion, my goal IS to be a ‘baby doctor’, aka a Neonatologist. I will not let EDS stand in my way! It may take me more time due to my larger hurdles, but I try to learn as much as I can on my own to make that part easier when I get there.
I am now 16. I’m an Ambassador for Fight Like a Warrior, an organization aimed to empower those with chronic illnesses. I am also an Ambassador for Easter Seals which is an amazing organization that provides programs, services and financial assistance grants to children and youth with disabilities to help them achieve greater independence, accessibility and integration. This is only the beginning of spreading awareness and public speaking.”
This story was submitted to Love What Matters by Serina Carey. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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