Two hands holding a paper heart

The POTS Community – Cari’s Experience

Today’s guest is my friend Cari. It was while listening to her talk about her experience with POTS and how it has served to draw her closer to God that I realized that living an “abundant life” is not synonymous with living an easy life. Rather, abundant life is a relationship with God. It is peace despite adversity, hope in the midst of pain, and choosing to believe that God is trustworthy, loving, and good no matter the circumstances. I look up to her greatly and hope that someday, I can offer the same epiphany to a fellow struggler. It is my joy to be able to share her words and experiences with you today!

When did you get diagnosed, and how did it come about?

“My POTS diagnosis came in 2012, after 20 years of struggling with a constant headache, fatigue, weakness, dizziness, clouded thinking, and pain. POTS was not yet recognized as a condition in the early 1990s when I first started having symptoms. Doctors did not take me seriously and told my mom I was making up my symptoms as my vitals and bloodwork came back normal. I tried chiropractors, physical therapy, allergy testing, vitamins, and natural supplements with no relief. I also had doctors give me weird explanations for my headache such as my neck being too skinny to support the weight of my head…I have a normal size neck, by the way! Years later, a friend told me about her teen daughter’s POTS diagnosis. Her symptoms sounded similar to mine. I asked my neurologist about the possibility of POTS and requested a tilt table test. Weeks later, the results of the TTT confirmed POTS. I was a classic case!”

How does POTS affect your life? What are the main things you do to manage your POTS?

“My body operates like an old phone battery that quickly depletes its power when nearing a low charge. I can be functioning well and getting many things done one minute, and then suddenly, I am completely spent and cannot do another thing. I try to work on my important tasks early in the day before my “battery” drains. However, there are several things I do to manage my POTS. First I get a lot of rest! I try to sleep nine hours a night and schedule down time throughout the week. Second, I drink a lot of water. I’m always equipped with a water bottle wherever I go. An hour doesn’t go by without me drinking something. Similarly, I also drink a cup of black tea in the morning and then again in the afternoon to keep my blood pressure from dropping. The caffeine in the tea constricts my blood vessels just enough that I can keep my blood pressure in the normal range. Doctors had tried medicine to do this very thing, but the side effects were not worth it. Tea is cheap and comforting too! Finally, I changed my eating habits. Smaller meals with snacks in between have helped me feel my best. Digestion is easier and my blood pressure stays relatively stable with this plan.”

How have your symptoms changed over time?

“I function well most days. I still have the constant headache that ranges in severity and I am still tired most of the time, but most of my other symptoms rarely affect me. I have learned to read my body for danger signals. If I have a sudden onset of nausea, I know my blood pressure is dropping. Usually, drinking some water and eating something helps this. If a dark cloud impairs the vision in my upper left eye, I know I’m going to pass out, so I immediately sit down until it passes. I am no longer dizzy or achy and my thinking is rarely clouded. Praise God!”

How has the journey impacted your walk with God? 

“I take Isaiah 40:31 literally and cling to the promise of walking and not fainting! I have learned to rely on God’s strength and do my best to keep a Sabbath rest. Resting is a spiritual discipline much like prayer or Bible study. Since I have been holding to this discipline, I have not had as many colds, and when I do get a cold, I recover in just days instead of weeks! This mental and physical rest has done wonders for my body!

In addition to POTS, I have supraventricular tachycardia (SVT) and lung issues. In early December, I had a lung spontaneously collapse (again). All these health scares have caused me to number my days and live each day with intentionality. I try to be present with those in my company and love them well. I ask God to show me who to invest in and how to go about it in order to build His Kingdom. I don’t want to miss out on His perfect plan for my life. POTS has taught me to rely on Him in all things.”

What is one moment that was hard at the time but you look back and laugh at now?

“During my tilt table test, I blacked out ten minutes into the procedure when my blood pressure bottomed out at 29/21 and my heart rate spiked. As dangerous as that could have been, I was thrilled to have such a definitive answer. I laugh now at my excitement over this. After decades of no answers, I finally had a reason for all my symptoms. My mom said, “We were praying for your healing, but our prayers were just keeping you alive!” I am truly grateful for life!”

It’s pretty amazing how God weaves “all things together for the good of those who love God and are called according to his purpose” like Romans 8:28 says. I don’t claim to know the breadth of God’s plan to redeem our physical suffering, but in the meantime it is my joy to watch for the ways that God is glorified through hardship. One tangible way I have seen the Lord work is through friends and fellow believers who also have POTS. There is something unique and beautiful about the encouragement from someone who has already walked the road you’re walking, and in the beginning of my journey, I was incredibly blessed to have friends come alongside me. This series is an extension of those conversations, and I hope that they bring comfort and hope to the person who feels alone in their journey.

 

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Kaley
kaleywied@gmail.com
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