Prevailing Over POTS

In 2018, after a gamut of testing at John Hopkins for my autoimmune disease, I was officially diagnosed with POTS. Although I had never heard of the condition prior to my tilt table test, according to my cardiologist, many people who struggle with gastroparesis also battle POTS.

As I was sitting in a board room surrounded by various physicians, interns, and researchers, my gastroenterologist inundated me with questions seemingly unrelated to the medical condition for which I was seeking help.

He asked me what my sweat patterns were, how I slept, if I ever experienced brain fog and headaches, how I handled temperature changes, whether or not I passed out frequently, if I experienced feelings of electrical pulses in my legs after activity, and much more. He inquired about positional changes and longevity of standing. He asked about swelling and blood pooling in my legs. Passing out and nearly passing out were also discussed.

After answering all his questions and realizing he was putting together a puzzle for me, I was dumbfounded. I felt like I was finally understanding a mysterious part of me that no one had previously explored. Information is powerful, but what was I to do with it?

I began drinking around 100 ounces of water a day as prescribed by the cardiologist, as well as taking electrolytes and avoiding quick positional changes. He told me that 20 minutes of cardiovascular exercise was extremely important for me. All of this sounds doable for a healthy person. However, at this time in my life I struggled keeping in 600-700 calories a day and only had about 8 hrs of mobility throughout the day before I was totally wiped out and bedridden.

For the next few months, I began a prescription regimen that turned things around. The Lord used the medical knowledge and expertise of my physician team at Johns Hopkins to allow me to begin digesting food and decreasing nausea. Having the extra nutrition slowly over time helped me to regain strength and begin attempting the exercise prescribed by the cardiologist.

Things began to progress and I was feeling so much better in some areas, but POTS continued to be a struggle. Fast forward to 2023 when I began seeing, Rachel Rauch, a naturopathic doctor. Rachel helped me in so many ways with my digestion, coming off medications I had taken for years, and with my nutrition. However, the POTS was still an ongoing hardship.

After contracting COVID-19 for the second time, my POTS amped up and things were looking pretty bleak. I did my best to keep my head up, but there were so many times that I longed to be taking part in my active family’s life, and was unable to do so. Not wanting to steal from their joy, I often cheered from a nearby bench or wheelchair as they swam, hiked, ran, played wiffleball, and enjoyed theme parks. However, inside I was struggling.

I kept praying for the Lord to heal me or to take away the longing I had to be a participant and not a spectator. I wanted to experience joy and gratefulness for what I COULD do, not what I COULDN’T do.

Nearing the end of my 6 month treatment plan with Rachel Rauch, she recommended an exercise program she had researched that was specifically for POTS. It is called, The Levine Protocol. I looked over the plan, but I was very intimidated by the 8 month commitment that it entailed, as well as the eventual 6 days a week workouts that would eventually come to fruition.

How would it even be possible? I couldn’t walk without getting super faint for any length of time. Actually, at this point, I wasn’t even able to stand and cook dinner for my family. How would I eventually be able to run a 5k?!

How?

Well, it would happen one day at a time with lots of prayer and determination.

There were so many days in the first three months that I wanted to quit. I wasn’t seeing improvement in my symptoms, and I was growing weary of the process. I had so little energy and didn’t see it beneficial to use what little I had on this workout program. Despite this, the Lord was so gracious to lift my head, and to also give me a goal to look forward to…the 4th Falls Hike.

Our family absolutely loves The Wilds Family Camp in NC. Our first year, 2023, was rich in the Word and fellowship. But for me, it was a struggle to be surrounded by such beauty and activity without being able to participate. Particularly, I longed to take the 2 hour hike to 4th Falls to see the gorgeous waterfalls with my family. That is what I was going to look forward to as my goal. By the time family camp 2024 came around, if all went according to plan, I would’ve completed 6 months of the Levine Protocol and I would scale the mountains to see God’s creative beauty.

I can’t describe the emotion I was feeling in this picture. There were happy tears and gratitude that just couldn’t be captured by a camera lens. God did it! He really did it! I knew He had the ability, but I am so unworthy of the grace of this gift!

This hike was incredibly difficult. Parts of the trail were filled with hills full of rock that had to be scaled. Not only was I able to complete the hike with friends and family, but I am looking forward to doing it again next year, Lord willing.

A couple of weeks after camp, the Lord allowed me to attain another goal. I reached the finish line goal of the Levine Protocol. I ran a 5k! With the hubby cheering me on and slowing his pace to be a constant encouragement to me, I crossed the finish line. Thank you, Jesus!

The Lord has taught me so much through this journey. Nothing is impossible with God! I have always known that, but to see the way he worked in and through me to accomplish these goals has changed my life. He has taught me to be diligent and to do hard things. Granting me faith and perseverance while surrounding me with the encouragement of family and friends has meant the world to me.

None of us knows what the future holds, and having an autoimmune disease can cause some chronic unpredictability. However, for as long as this season lasts, this physical body is going to do all it can to glorify the God who created it, strengthens it, and sustains it. As Acts 17:28a says, “In Him we live and move and have our being.” Only through Him could I have achieved this outcome.

Thank you, Lord, for giving me a taste of Heaven here on earth.

“He gives power to the faint,
    and to him who has no might he increases strength.
 Even youths shall faint and be weary,
    and young men shall fall exhausted;
 but they who wait for the Lord shall renew their strength;
    they shall mount up with wings like eagles;
they shall run and not be weary;
    they shall walk and not faint.” Isaiah 40:29-31