‘It’s just growing pains, don’t worry about it!’ I couldn’t even walk. I was terrified. I HAD to speak up for myself.’: Young chronic illness warrior details road to diagnosis, ‘I took on this journey with a smile’

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“I first started being ill in elementary with frequent bronchitis infections, strep infection, and IBS (irritable bowel syndrome). I always missed at least 20 days or more from school because I was sick so much. I was in competitive dance and it seemed I got sicker after every competition or dance convention.

My sixth grade year is when everything started getting worse. It started with severe leg pain, hip issues, and frequent grade-two or grade-three ankle sprains. I was dancing 10 or more hours a week, and was told my problems were because of growing pains and not to worry about it. My favorite competition and convention was Tremaine and that year, my first sprain happened in December. It took several weeks on crutches and therapy to dance again. I then got re-injured during the summer for Dallas Summer and was trying my best to dance, but the pain was just too much. It also made me lose the chance to audition for Tremaine Dance Company, something that was very important to me to be a part of. Even though this year was hard, it was not the worst.

Courtesy of Madison Joiner

My seventh grade year began with more IBS problems. My doctor took away sugar, wheat, gluten, and lactose. I lost about 15 pounds because I couldn’t eat much. I also found out I was allergic to most of my environment and was diagnosed with asthma. I also began having major pain in my arm due to an osteochondroma, which is a non-cancerous mass on the bone on my humerus.  At the same time, I was having a lot of strep and became a candidate for a tonsillectomy. Due to my arm causing more pain, including shooting pain that went down to my fingers on my right hand, we decided to proceed with the removal of the osteochondroma.

Unfortunately, during the pre-check up, my heart rate and blood pressure were really low. I had to have further testing and get cleared for surgery. It took an additional 2 weeks to get cleared, and then I had surgery. My surgeon said in his 20 years that was the biggest osteochondroma he had ever removed. The pain after was horrible. I was vomiting and dizzy, and I hit my head trying to make it back to my bed. This is when the migraines started. In March of 2018, I had my first MRI of the brain, but it didn’t show anything. I continued to have migraines and I felt like I was spinning. I had to go home from school a lot due to my migraines. Although I had medical issues, I was signed for a modeling agency, an acting agency, and started dancing.

Courtesy of Madison Joiner

When I went back to dancing, it made things worse when I had to spin. I had an opportunity to rejoin my former dance company, so I pushed through the pain. My mom was worried, but I didn’t want to let my team down and I had an opportunity to audition again for the Tremaine Performance Company and to compete at Nationals. Nationals was in Orlando in July for 7 days. I began passing out, but my mom just thought I was tired because I danced almost 10 hours a day and then had rehearsals and competitions. I continued to have headaches, too. I had a couple of weeks of break, and then I was back on a plane to Los Angeles for the Tremaine Dance Intensive and company auditions. Day one in LA, I was in so much pain I ended up going to urgent care. My mom said we could go home, but I knew everything my parents paid for, so I said no and pushed through the pain.

We had to walk almost 30 minutes to and from the facility for the intensive. The facility was jam-packed with other students and didn’t have air conditioning, just large fans, so dancing in the heat caused me to feel worse. I pushed through everyday and didn’t miss a single class. My end goal was making the team, but it didn’t happen. However, I did meet a new friend named Bethany and was able to spend time with my mom. A couple of weeks after returning from our trip, I started school. I thought I was just tired from my summer events, but I could barely stay awake on the car ride to and from school, which was about 15-20 minutes. My throat was hurting so badly I figured I had strep, so my mom took me to the RediClinic, but the strep test was negative.

Courtesy of Madison Joiner

The same week, I had a severe asthma attack and found out I was highly allergic to sesame seeds. I ate orange chicken at school and had hives, itching, and felt like my throat was closing up. I’m guessing my body was overloaded, and then one day I could physically not even walk into the school without assistance. It took me ten minutes to walk to the end of the hall, and my principal, Dr. Leblanc, saw me struggling and found a rolling chair and rolled me to my first-period class. He helped most of the day get to my classes. My legs felt so heavy and I was terrified of what was happening. Things began to go downhill from here. My heart rate was in the 40s and 50s, and my blood pressure was 60/40. My mom took me to Urgent Care, who sent me to a free-standing ER.

The ER saw my struggles and didn’t even get me a wheelchair. They did a chest x-ray, a blood test, and said it was good I had an appointment for a cardiologist next week. They didn’t even give me fluids, which would have probably have helped me. They seemed like they didn’t even care. The next week, the cardiologist diagnosed postural orthostatic tachycardia syndrome (POTS), which is a condition that affects blood flow, causes high heart rate, dizziness, heart palpitations, and much more. The doctor was very nice and helpful, but due to her not being in our network, we had to find another doctor. The next cardiologist was upset I couldn’t stand for an assessment. She also said it was all in my head. I felt angry and upset my doctor would say what I was going through wasn’t true, so we searched for a new cardiologist.

Courtesy of Madison Joiner

During this time, my mom called and pleaded for my neurologist to see me, but they kept saying they didn’t have any appointments, so we went to a new neurologist. I was given fludrocortisone to help reduce my symptoms. I saw a little relief. So much was going on and I was physically unable to return to school, so I began homebound school in September of 2018. I had a teacher who would come two times a week for 2 hours to help me with my assignments. Finally, over a month later, my neurologist saw me and was disgusted with his staff for not putting me on the schedule sooner. He also helped connect us with a cardiologist who was well known in treating dysautonomia patients.

Dysautonomia affects the autonomic nervous system, causing fainting, breathing issues, cardiovascular issues, and endocrine issues. I began physical therapy in November of 2018 and was able to walk really well with a rollator by the spring. I thought things were going well until my insurance threw us a curveball. My physical therapy place was no longer in our network, so I had to stop going. My mom searched around to find a place who understood how to treat my particular illness and the new therapy place said they did. My mom and I both told them they were pushing me too hard, but they didn’t listen. I walked in September using a rollator, almost walking by myself, and left in August back in my wheelchair. I have learned I need to speak up more when it comes to my treatment.

Courtesy of Madison Joiner

Also during this time, my food allergies became much worse, causing uncontrollable seizures, convulsions, and tics. I had to go to the ER two times for this, and one doctor told me it was in my head and I could control it. I hate hospitals personally, and I didn’t want to go, but my parents and sister were concerned because I hit my head during the convulsions and was passing out a lot. We were billed, even though I left 15 minutes after he barely checked me out. He didn’t ask for neuro or a rheumatologist consult. My parents filed a complaint but we were never told the outcome, just that they would look into it.

During this time, I was also getting weekly IV hydration, and my neurologist was trying different medications. The medications made me a lot worse. I tried to go to school again, but it was just too exhausting, so I went back to homebound school. I really wanted to be at school and stay in my academically challenging classes, but due to my illness getting worse I was taken out. I believe some of my teachers didn’t understand my brain fog, vision issues, total fatigue, and migraines. This illness affects my day-to-day life.

Courtesy of Madison Joiner

Things turned for the worse when the pandemic hit in March. All of my doctors went virtual and all elective procedures were cancelled. I started not being able to keep anything down. We believe I started developing reactions to the IVIG that caused this. IVIG started in October of 2019 and ended in July of 2020. During the summer, I received a port to get fluids weekly, I had a kidney stone, bladder issues, chronic vomiting, all while trying to take a summer class. It was too much, and my body was done.

In August, I didn’t go to school due to my immune system, but I really wanted to because I had made the Legacies Dance Team. I was so excited to be a part of something again and have friends. I have attended a few things with the team, but my goal is to be able to dance again and really be a part of the group. I’m a fighter and will not let these illnesses control my life. Everyday I wake up in pain, but also happy I am still breathing. I am blessed to have a caring and supportive family who goes above and beyond to make the best of this situation. In the recent months, I was able to find doctors who know my health conditions and how to work with them. I met both a gastrologist and an allergist.

Courtesy of Madison Joiner

Through the months of September to October, I struggled severely with my GI issues and ability to keep food down. During my first-ever hospital stay in September, I was put on a clean-out due to being severely constipated from the lack of food. I was placed with an NG tube while I was admitted, since all the food being served I was allergic to. Some of the staff thought I didn’t want to eat and there was something more psychological going on, which made me have a breakdown after they left the room. It was a few days after I escaped after shoveling food down my throat my mom brought from home.

Courtesy of Madison Joiner

Over the course of a few months, my ability to keep food down didn’t get better, to the point where I drastically lost 10 pounds in 4 weeks. During the next admission, I went for an NJ and decided to stick with a NG, due to the problems and complications that would come with a NJ. November through December and into the New Year, my health has been taking a toll on me, my mental health, and my schoolwork. The challenges of pain, exhaustion, and severe stomach and head pain make it hard to focus on daily activity. I cannot be in a room without a heating pad, a throw-up bag, and my service dog.

Through it all, the things that keep me happy are gory horror movies, my favorite k-girl groups, and my supportive family with my best bud, Saito. My journey has been extremely long and hard, but I took it on with a smile because I know I could already be 6 feet under. Plus, I’m all my physicians’ favorite; what’s not to love!”

Courtesy of Madison Joiner

This story was submitted to Love What Matters by Madison Joiner of Houston, Texas. You can follow her journey on  Instagram and her blog. 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.

Read more stories from chronic illness warriors:

‘He’s coming to kill me!’ My mom covered my mouth to stop the screams. What was really hurting me was the monster inside.’: Chronic illness warrior shares journey, ‘Never give up hope’

‘It’s obviously psychological.’ Doctors dismissed my pain. I lost over 20% of my bodyweight in 8 months. I felt like a zombie.’: Chronic illness warrior finds hope, ‘I’m still fighting for answers’

‘My face shriveled up. I looked like I aged 50 years in a matter of minutes. Nobody understood the pain I was in’: Man diagnosed with Lyme disease, ‘There’s nothing you can’t accomplish’

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