“In May of 2017, I was a healthy, active 15-year-old girl. I loved running and being active my entire life. Over the course of a few weeks, I suddenly started having bad eye allergies and food sensitivities I’d never had a problem with previously. It was the first sign something was wrong.
By the end of June, I was in the bathroom and had just finished getting dressed when everything went black. I woke up on the bathroom floor with my head pounding. ‘Did I pass out? I think so.’ My mom told me, ‘It happens sometimes to girls your age.’ So I started taking iron supplements and we hoped it wouldn’t happen again.
A few weeks later, we were getting ready to go to a party. I was changing my clothes when I caught a glimpse of something odd in the mirror. There was a shadow across my abdomen. Under my left ribs, my side had a deep indent that ran across to my stomach. Panicked, I showed my parents. It was hard to tell if my side was caving in, or if my ribs were sticking out. Either way, it didn’t look good. In August, I began having pain. Lots of pain between my ribs. I was never hungry and when I ate, I got really sick. I had x-rays and blood work done, but the doctors found nothing wrong with me.
I went downhill, fast. The pain was so bad I would curl up in a ball and lay in the fetal position for hours every day. I was 122 pounds in September and by December, my weight had dropped down to 104 pounds. The pain spread over my entire abdomen and hurt so badly, I had to leave school. We tried everything we could think of to help. We eliminated dairy, soy, gluten, nuts, and every other food that could cause sensitivity issues. My doctor was also giving me different pain medications to try to find one that would help. We even had to go to the emergency room a few times, due to the severe pain, and that was only the beginning.
When going through severe health trials, many people say they just had a feeling something wasn’t right. That’s exactly what I felt. We visited the gastroenterologist next to see if we could find answers. We had a 15 minute conversation with the doctor. He told us, ‘You’re a teenage girl and stress is normal at the beginning of a new school year.’ He diagnosed me with IBS, even though the symptoms didn’t match up. He even recommended putting me on a low dose of antidepressant. We left his office feeling frustrated and disappointed. Even though the diagnosis came from a trained specialist, there was no part of me that thought we had found the answer.
It was about a week before Christmas when my older sister had come home for the holidays. I felt terrible. My dad had me sit on the couch next to him, and that’s all I remember. Over the next hour and a half, I was told I had lost consciousness over and over again. 18 times! The next thing I remember, I woke up in the ER with an IV in my hand. It was the scariest night of my life. We had no idea what was happening to me or what was causing my serious health condition.
The doctor pulled my mom aside and told her in a hushed tone, ‘She could have a problem with anorexia.’ It took a little bit of convincing, but she assured him this was not the case and he needed to ‘look in another direction.’ So he ran every test he could think of to run and still, every test came back normal. We went home with no answers.
I started going to Seattle Children’s Hospital to see more specialists. I had scans of my abdomen and head, tests on my stomach, multiple rounds of blood work, and again, they found nothing. Over the next year, more and more symptoms appeared. I had a hard time catching my breath just walking up the stairs. I started having bad circulation problems. My passing out episodes also continued, but only now, my legs would go completely numb for an hour or two afterwards. I started losing the use of my hands. Both my eyes and ears became extremely sensitive. On my worst days, my mom had to feed me, do my hair, and brush my teeth for me. I was so weak.
During this time, I had an endoscopy that started a whole new difficulty. When I woke up from the anesthesia, I started to shake. The nurses reassured me, ‘It’s a normal reaction when your body wakes up from anesthesia.’ What wasn’t normal was the next morning. I began having shaking episodes daily, for months. Sometimes it happened when a cold breeze hit my face, sometimes when the heater turned on, sometimes when I drank cold water, and sometimes when nothing changed at all. My nervous system overreacted to everything.
The stairs became my ‘Mount Everest.’ Every morning, my mom helped me down the stairs, and every evening, my dad helped me back up. I’d push myself to climb those stairs the best I could until one day, I couldn’t. I only had a few steps to go, but I couldn’t climb any higher. Soon, I couldn’t make it up any of the stairs. I was crushed. Being able to climb the stairs meant I still maintained some of my independence, and being a teenager, independence meant everything.
I began having memory problems. Our doctors told us, ‘Sometimes when people are really sick, their body is so busy doing other things, their memory falters.’ I stopped remembering day-to-day. I felt so very lost.
An inspiring family I follow on Instagram, Terah and Indy, talked about a miracle they had while moving. Indy’s make-a-wish playhouse was lifted over their house with a crane with balloons tied to the top so it looked like the scene from the movie UP. It made me so happy watching it, I showed my dad. Noticing how happy it made me, the next morning, he showed it to me, and I watched it like it was the first time. My dad and my sister continued showing the video to me every day. I watched it at least 40 times as if it were the first.
In April, we were grasping at straws. We didn’t know where else to turn until one morning, as my dad and brother were cleaning the garage, a small, plastic object fell out of a box they were moving. My brother picked it off the ground and asked my dad what it was. My dad explained it was a tick key, a tick removal device. At the same time, my mom was chatting with someone on Instagram. After a brief explanation of my difficulties, the person she was chatting with, asked if I had been tested for Lyme disease. Something clicked in their minds. I believe this was an answer to our prayers.
That night, my parents turned to the internet to learn everything they could about Lyme disease. My amazing dad took it upon himself to find the right test and the right company to get me tested. A few long weeks later, the test results came back. I tested positive for Relapsing Fever and Bartonella, two coinfections of Lyme disease.
After these results, we saw an infectious disease specialist who told us he didn’t think I had Lyme disease at all and had us do testing for different diseases. Again, nothing came of the new tests. Still convinced I had Relapsing Fever and Bartonella, my dad wanted to treat me for it. That’s when my dad’s cousin told him we should see her brother-in-law, Dr. Noah. We scheduled a time to go to see him at his clinic and get treated by him. With his therapies, he was able to help me! My memory was still gone, but we could tell things were starting to turn around. My symptoms were slowly starting to improve! I was getting more energy back. I could eat a little more without getting sick and my GI system in general, started to improve. We began to follow our hearts.
One day, my hands were having one of their worst shaking days. I had to leave to get treatment soon, so my brother carried me downstairs and set me on the couch next to the piano. I’ve played the piano for years but hadn’t been able to for so while. I sat looking at it, remembering what it was like to play my favorite songs. I decided I wanted to try and play, even if it was only a few notes.
I made my way over to it and looked down at my shaking hands. I was already discouraged just looking at them but still determined to play. As I placed my hands on the keys and began playing, my hands stopped shaking! When I stopped playing, my hands started shaking again. When I played again, they stopped! It was such a fascinating miracle! It showed me a glimpse of the healthy part of me that was still in there, waiting, just as anxiously to be seen as I was. It gave me hope I was going to get better.
Though some of my symptoms were improving, my neurological symptoms were still very worrying. Every morning, I had no memory of the Lyme disease test, most of COVID-19, or anything for months. When we were staying in a hotel, I would wake up in a strange place, not knowing where I was or how I got there. Despite our best efforts to stay calm, it was scary.
My dad called and called and pushed and pushed until he got me into the Mayo Clinic. My symptoms were becoming more and more neurological and we weren’t sure what to do next. 2 years after my first symptoms appeared, we left for Minnesota to the Mayo Clinic. While we were there, we met an incredible neurologist, Dr. Patterson. He checked and inspected my entire nervous system and felt up and down my ‘nerve trunks.’
After a long examination, he diagnosed me with Dysautonomia. It basically means my nervous system had stopped functioning correctly. The development had been drastically delayed because of my severe illness. He told me something I will never forget. He said, ‘I don’t see any reason why you shouldn’t make a complete recovery!’ I responded with a huge grin, ‘I LIKE you!’ I sighed with relief. Oh, how I needed to hear those words!
Dr. Patterson went on to explain to us how every one of my symptoms fit into this diagnosis. He told me, ‘We still don’t know very much about the human body, but with what we do know, I can help you get me better.’ I was finally given a path to healing! We waited 2 hard, frustrating years with no diagnoses and within a few months, had found not one, but two diagnoses! Our prayers had been answered!
The week leading up to my birthday, I dreaded its coming. I didn’t want to have a wonderful day and forget it all. This would be the third birthday I had missed because of this illness, and I didn’t think there was any way of getting those years back. I wanted a do-over, to be able to go back in time and be a healthy 16-year-old.
On September 23, my 18th birthday (6 months without any short-term memory, my mom put together a ‘drive-by and say hi’ birthday party, as COVID-19 prevented us from a ‘normal’ party. That morning, I woke up to a balloon at the bottom of my bed. I first thought it was for my sister’s birthday in April. My mom had to give me ‘the talk,’ about my current struggles, Dr. Noah, and the Mayo Clinic. I was devastated. After a while, we decided, memory or no memory, we would make this an amazing birthday.
Before the party, my little sister and I watched the Pixar movie, UP. We watched the part where the house is picked up by balloons and lifted into the sky and I thought of Indy. I had a vision in my head of Indy’s playhouse being lifted by a crane. It was a MEMORY! My mom walked into the room and I exclaimed, ‘I remember!’ I suddenly remembered watching the news story in the hotel room while we were going to Dr. Noah’s clinic. I remembered Dr. Noah! And the Mayo Clinic! Just like that, the memories came flooding back! After a few, very exciting hours as everything from the last 6 months came back to me, we drove to the park for my ‘surprise’ party. I was able to tell everyone the exciting news. There were A LOT of tears that day. I was blessed with another incredible miracle!
Today, I am getting better and better and I still have all my memories! My walking has improved, although I still have to use a walker and a wheelchair, and I am more able to use my hands now. I was even able to type this! We also recently experienced yet another miracle. The Mayo Clinic program got moved up and we are leaving for treatment the day after Thanksgiving and will return just in time to celebrate Christmas with my family!
I’m so excited to learn better ways to treat myself and help my body to heal. I know I have gone through these trials for a reason. My prayers have become more sincere. My outlook on life has completely changed. I have learned not to take my body for granted. If you can walk, go walk. If you can run, go run. If you can sing, well even if you can’t sing, go sing! Above all, remember every day is a gift and ‘a grateful heart is a magnet for miracles.'”
This story was submitted to Love What Matters by Sabrina Stewart from Moses Lake, WA. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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