After my spinal fusion, I had an extremely long road to recovery ahead of me. Re-learning to walk was an arduous and long process. I resumed physical therapy with Susan Chalela in Daniel Island to build strength in my neck and legs. One of the things that makes Susan special is that she has hEDS herself and has suffered through many health struggles. She is extremely empathetic and knowledgeable about EDS. Although getting to PT was difficult, I was always greeted with a smile. The majority of her patients have EDS and struggle with CCI, so it was comforting to have people going through similar health issues who could relate. It was nice to have the opportunity to ask patients questions and it was rewarding to be able to give advice and help to others. At PT, I saw other chronically ill patients and began to feel a sense of acceptance and community.
Susan fitted me with ankle, knee, and hip braces to aid in coordinating my legs. During our sessions, she attached me to a harness and lift which helped support me while I learned to walk. Any time I fell, the lift would catch me and no harm was done. I couldn’t feel where my legs and feet were in space, so I was frequently stepping on my own feet and falling. My legs were like jello.
My dad played a key role in my rehabilitation by carrying me out to our hot tub and assisting me in walking across the pool. This was invaluable because the water made me lighter so it was easier to carry my weight. Also, any time I fell, it was just water so it wasn’t painful or harmful.
Millie helped keep me positive by getting me crafts and thinking of little activities for us to do in the house. Our car rides to physical therapy often consisted of us laughing and singing Disney songs in the car with the windows down. Millie is truly my angel, and she helped keep me hopeful and mentally healthy.
I am blessed to have an amazing support system. During this time, so many friends and family members were praying for me and constantly checking in. The walls of my bedroom were covered in get-well-soon cards and posters. Through all of the uncertainty, I was facing, I always felt loved.
On February 19th, I was having a family dinner when my jaw began to click very loudly and pain radiated throughout my face. Because I had a small infection on the left side of my mouth, I was mainly chewing on the right side. The right side of my jaw began to hurt so badly that I had to spit out my food and stop chewing and eating. Then almost immediately, the right side of my face went numb and began to tingle. Then, the numbness and tingling feeling spread to the whole right side of my body, particularly to my arm and leg. I was horrified and thought I might be having a stroke. My parents became alarmed, and then I went into a panic. My chest felt tight followed by shortness of breath. They rushed me to the ER hoping to rule out the possibility of a stroke. Everyone at the dinner table knew the drill and helped me get to the car and then went about their night.
At the ER, they called a stroke code, and about ten nurses, doctors, and residents rushed to examine me. The pain from the jaw escalated my headache. I put ice all around my face and head. They took me on a stretcher to get a CT scan. Thank goodness, the CT scan looked normal and didn’t show any signs of stroke or complications from the surgery. They hospitalized me overnight, and I received an MRI the next morning which confirmed that I did not have a stroke and that all the screws and the plate in my head were in the appropriate position. I was relieved but was left wondering why the tingling/numb feeling and why the jaw pain had not subsided. The doctors suggested it could be a hemiplegic migraine or maybe TMJ, which is evidently common in EDS patients. After a couple of days, the tingling and numbness subsided, but the jaw pain turned into this weird lockjaw. I literally couldn’t open my mouth for a week, which made eating and talking a huge challenge. My mom and MIllie took me to an oral surgeon for evaluation. My dad crushed up food for me to eat. It was a team effort and sometimes we just looked at each other and either started laughing or crying hysterically.
Slowly, I began to improve. My migraines were still constant, but instead of being a 10/10, they were closer to a 7/10. My body aches and chest pain left, and I could finally regulate my temperature again. Sadly, my nausea and vomiting persisted. When vomiting, my neck would jerk a bit and my migraine would increase significantly. I began to associate eating with pain. Eating became a displeasure.
My mom got pretty assertive with my GI doctor, who seemed very passive in her treatment. The GI doctor seemed to prescribe the theory of ‘do nothing and it will likely go away and my mom told the GI doctor that we were beyond tums, Pepcid, and Zofran and needed more comprehensive testing and an endoscopy would be a good start. We wanted to find the cause of the issue instead of putting bandaids on symptoms.
The GI doctor agreed to perform an endoscopy in March of 2021. It should not have been a surprise when we discovered that I had gastroparesis. From the scans, my stomach motility was extremely poor which explained why I always felt so full and frequently vomited. My GI doctor also noticed that I had celiac disease; the villi in my stomach were atrophied/damaged and therefore causing malabsorption. An IgG test done by a nutritionist showed an allergy to eggs and dairy. After cutting these foods out of my diet, my vomiting became much less frequent. Rather than throwing up multiple times daily, I only vomited a couple of times a week. However, the nausea and fullness continued, and my fear of food grew and grew.