Morgan Share her POTS Story: Part Two

This is part two of Morgan’s story. Read the first half here.

I was taken off of work and school for three months to monitor my condition.

I had to drop my college classes without a refund, because I had missed too many days. When I did return to school, I had to be transported in a wheelchair to reduce liability, and anytime I felt like I was going to have a seizure, I would leave class to lie down in the nurse’s office. Many doctors and health professionals still suspected that my seizures were psychosomatic, or essentially, in my head.

One day in the nurses office, my body was spasming uncontrollably in yet another episode when the nurse said to me, “You’re clenching your fists and turning them in. Did you know you were doing that? That’s one of the hallmarks of an actual seizure. You didn’t know that, did you?” 

I went ahead and quit my job. I had worked there, and worked hard, for two years, but I just couldn’t do it anymore. I was too sick. My boss told me to come back anytime. I graduated with a 4.0, but I lost my spot as valedictorian to two other amazing students who were able to finish the college courses I had needed to withdraw from. It didn’t bother me, though. Honestly, I was too busy being sick to care. 

I still pursued my education, taking classes mostly online at a local community college. I decided to major in business, hoping that one day I could start my own. I saved all of my grant refunds to build a tiny house, which I intended to use as a college dorm. My dad and I built it together, but of course, we had to take breaks when it was too hot or we were too symptomatic. He also struggled with his other disabilities, two bad knees and two bad shoulders, from years of manual labor.

By the time it was nearly finished, I had reconciled with my junior high boyfriend, and things were getting serious. I told him I was ready to move in to my house, and he said, “Oh. I thought you’d move in with me.” By that June, we were living together.

I had begun working again during college at a gas station four miles from my parents’ house. That lasted about a year, but then I started having more episodes. I left to focus on school, but money was tight.

For a year or two I was stuck in a vicious cycle: get job, work self into ground, quit for health reasons, repeat.

One day my boyfriend found me crying in the bathtub. He said, “If it’ll make you happy, move back home. I’ll support you, whatever you do.” I called my parents, and they promised they would help support me. They told me that I didn’t need to work, that I needed to take care of myself. 

I wanted my own space, so I moved into a 1977 Dodge motor home. At first, I was in love with it. It was super easy to keep clean, since there was only maybe six square feet of floor space. It was quirky, and most of all, it was mine. I still had a tiny house, but it didn’t have plumbing. My plan was to live in the camper, take care of myself, find a way to support myself, and fix my tiny house when I could. 

I checked out books from the library about entrepreneurship and business. I got a job, working only two hours on Sundays in a church nursery, which paid just enough to buy a bit of gasoline, but it helped me feel like I was contributing. I could buy a few groceries here and there. At that time, my family thought I should apply for disability, since I was physically unable to work a regular job, but I was denied. 

Life in the motorhome was not always sunshine and rainbows.

The water lines busted nearly every day, because they aren’t really meant to stay hooked up. When it rained, the roof leaked, and when it stormed, the whole thing swayed. I woke up in puddles occasionally, and almost always had to shower at my sister’s house. I spent many nights with my boyfriend at his house, and when I was home, he would call, and we’d end up fighting. He had been the one to tell me to move out, and do what I could handle– but he was angry and hurt that I had left, even though we were still a couple.

One night I finally put it to him this way, “Every time I sit up or stand up, any time I am upright, my heart is racing as if I am running a marathon. I’m exhausted. I’m always exhausted. I’m always in pain. It made it hard to do housework, but I always did as much as I could. It makes me tired. You thought that because I was in bed when you left for work and when you got home that I had slept all day, but I hadn’t. I would get up and do what I could until I physically couldn’t anymore.” 

I don’t know why he had never truly understood my condition before. He’d been there to witness my seizures. He’d carried me to bed countless times. He’d wiped my forehead and watched for breathing. He’d been there for me, but until that night, he had still wondered why he worked and I didn’t but the house wasn’t clean. He didn’t understand why I was always tired. That night, it finally clicked for him, and we made a plan to make it work. 

For me, that meant finding work that I could do and getting as healthy as I could.

I saw an ad in a local paper for the Ozark Foothills Literacy Project. They needed an office assistant. I had college experience, but I had never worked in an office before. I researched the company and found that they were a nonprofit teaching adults to read. Not only did I need the job, I wanted it so badly, because I felt like it would help me contribute to my family and my community. I put in my resume and was granted an interview.

I was so nervous on the way to the interview. When I pulled up, I saw nice cars in the driveway, and I thought, “What will they think of my rusty old truck?”

I was never up front about my illness until I was hired at any of the jobs that I had held. It was the same with this one. I answered all of their questions honestly, but I didn’t voluntarily divulge information on my personal health. I prayed that this would be it, the job I could work. 

I was shocked to get a call the next day saying that the job was mine. At orientation, I fessed up about being “a freak of nature” as we sometimes called it at my house. Coincidentally, one of the directors had a best friend with POTS who had thought of applying for the job. She was familiar with the condition. 

The Literacy Project was an immense blessing to me. I was able to use the skills I had learned in college to help other people, and no one was counting my sick days. 

After a year of loving my job, my director asked if I’d like to train to take her place. She said she wouldn’t be going anywhere anytime soon, but she could teach me how to do reports and financials. I’ve always been keen to learn new things, so I readily agreed. She didn’t find a full time job and stayed on as director. 

During that second year of work, I was able to take a week off and go to Vanderbilt with the support of my mom and great-grandmother. It was a six hour drive, but it was more than worth it. After being sick for five years, I finally received an official diagnosis of POTS.

Dr. James Muldowney spent five minutes with me and told me what we had known for years.

He said, “Yep. You’ve got POTS.”

He was particularly interested to hear about how I would pass out on the playground as a small child and complain of chest pain. He told me I most likely had had POTS my entire life and that it had worsened in my teens. Through my family medical history, he learned that my father also had POTS, as well as my paternal grandmother and several of my father’s uncles.

He prescribed a physical therapy plan and medication that was life changing. My boyfriend and I had lost a baby in 2015, and now I could finally focus on getting in good health to try again. 

In 2016, after two losses, my boyfriend and I were ready to welcome our first child.

We had been trying for three years. My family thought it was a terrible idea, that I didn’t need anyone else to care for, but I had always wanted to be a mom. We figured it was better to do it while I was still young, since my condition might get worse as I aged. We both wanted to reproduce while we were still young enough to have fun with our kid.

We were terrified every step of the way that something would happen to our baby, but we were both so in love with her from the second the line turned pink! I was shocked that I’d made it through the pregnancy still able to walk and take care of myself. At 35 weeks, I began having contractions and was put on bed rest to wait out the rest of the pregnancy. That was when my boss told me she had found a job, and in June of 2017, I returned to work as the director of our nonprofit bringing a newborn baby with me.

Today, my family and my job are what I live for. My daughter is the coolest child I have ever met. She is funny and smart. We laugh at her constantly! She brings happiness everywhere she goes, and I can’t imagine what life would be like if I had let my disability deter me from having her. A few months after her birth, her dad and I got married. We had been waiting so that I wouldn’t lose my health insurance. We held her between us as we said “I do.” She’s exactly what we had been missing. 

My husband is much more understanding now of my condition and consequently, the condition our house is often in with a toddler! He loves our daughter so much and takes her out for special Saturday mornings with him to let me sleep in or clean the house (or take a shower by myself).

Through my job, I have been able to hire others with disabilities to work or serve with our program. So far we are four for four on individuals with special needs in the office (I don’t think they’d mind me saying so). I feel incredibly blessed to be able to help others get a foot in, and I’m eternally grateful to the two wonderful women who gave me a shot despite my chronic illness.

I’m not going to lie, it has been a crazy ride.

At times, I’ve struggled with dark thoughts. I grieved the activities I could no longer do and despaired that there was no cure. It took a lot of convincing for me to finally be okay with going from a person who cared for others with disabilities to being a person with a disability. 

However, I am the healthiest and happiest I have been in a while. I still have POTS. I still have days occasionally when I’m bedridden. Bathing my daughter wears me out, and I tire easily. I’ll always have POTS, but I’m going to the gym a few times a week, starting with recumbent exercise and building up. I’m working full time helping others overcome language barriers, learning disabilities, and poverty, and in turn, that motivates me to overcome my own struggles. I am adapting. 

Research on POTS is still ongoing.

Not much was known when my mom did her original dial-up internet search. Since then, it’s been found that there can be many different causes for POTS. Genetic like mine, viral, autoimmune, and hormone-triggered are a few. There still isn’t an FDA approved treatment for POTS, but the more we research, the more we talk to each other, and the more we educate others, the better lives we’ll lead. 

There are still health professionals and doctors who don’t believe in POTS. I hope my story, and others, will change their minds and the way that they treat POTS patients. I also hope it will give fellow POTSies hope and encourage them to continue pursuing their dreams.

Want to learn more about dysautonomia? Check out our friends, the Dysautonomia Advocacy Foundation

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