Post-Grad POTS

A week before I graduated (so right before finals), I got a sinus infection. Not unusual for me during finals week. Also the pollen concentration in Birmingham was ridiculously high. So I went to urgent care, got meds, and walked across the stage to receive a participation award that I paid thousands of dollars for. Moving on.

For a graduation trip, I went with my parents to Savannah. Lovely trip. However, the pollen concentration of Birmingham shifted to Savannah while we were there. So I got a sinus infection. Again. Because I had only been off meds for 12 days, I waited to start another round of antibiotics. In the waiting period, it developed into bronchitis. Which forced me to go to urgent care on Memorial Day, because I was supposed to start my job the next day.

The plan was to get meds, get home, and get ready to commute to Birmingham the next day for work. That didn’t exactly happen. When my heart rate and blood pressure were taken, the nurse expressed concern. Sitting down, my heart rate was 116, and my blood pressure was 88/58. I was impressed by how thorough the doctor was at urgent care…on Memorial Day. She concluded that I was dehydrated (hence the high HR and crazy low BP). We tried to do IV fluids, but I was so dehydrated that they couldn’t get a vein. So she told me that I needed to hydrate like crazy or go to the ER. I chose to hydrate like crazy. With some added concern about my BP, especially.

Fast forward a week. The week that I was actually supposed to start my job, since I was no longer contagious. The night before my commute, I didn’t sleep. Not that I couldn’t get to sleep for a while. I didn’t sleep. At all. I still went to work. (Because I’m a dedicated worker, @ any potential employer who might find this someday.) I tried to take a nap after work. I couldn’t. I can’t remember exactly how long I was awake, but it was somewhere between 35 and 39 hours.

That wasn’t okay with me. So I saw my general practitioner for anxiety meds a few days later. I told him about the high heart rate I had the week before, and he said he had noticed in the past that my heart rate is generally high. He started me on an SSRI to manage insomnia and see if it would lower my heart rate.

At the advice of my wonderful roommate Katie, I started keeping track of my heart rate. My average heart rate for the remainder of June was 98; it rarely went below 90. Here’s another example: One day in July, I cleaned my room and got my heart rate up to 117. So I sat on my bed for 15 minutes. Which then increased my heart rate to 134. 🤷🏼‍♀️

So that’s what I’ve been dealing with lately, in addition to the normal dislocations. I waited until July to get a referral for a specialist here in Birmingham. Thankfully Katie has a fantastic doctor who treats her dysautonomia aka dysfunctioning of the autonomic nervous system. “The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death” (from Dysautonomia International). I had my appointment with this doctor this week.

Appointment summary: I got on a treadmill for the first time since 2011 (since I’ve had plantar fasciitis in both feet and was instructed in 2016 not to run, due to the risk for joint injury). That was real fun. I survived, but my heart rate got up to 182 by the third of four levels. I’ve been recovering ever since. Also this sign was hanging above my head after I stumbled back to a room and collapsed on a table. Definitely was walking humbly.

IMG_5749

Results summary: I have dysautonomia and, more specifically, POTS–Postural Orthostatic Tachycardia Syndrome. *copied and pasted to ensure proper spelling* Basically my heart rate gets too high when I stand up, contributing to even more fatigue than I experience due to muscular fatigue. POTS also includes the symptoms I’ve dealt with this summer: low BP, insomnia, anxiety-like responses, etc.

Treatment plan: No more new medication. 🙌🏻 Instead, we’re trying to increase the blood content in my body, so that my heart doesn’t have to work as hard. Basically, here’s my treatment plan:

a1542101e53c9886f049afd3f6f3b1cb

If you need me, I’ll either be chugging water or salt. But really though–I’m supposed to get twice the recommended daily amount of sodium intake for a normal person. 5. Grams. Of. Salt. Per. Day.

Also, I can’t have caffeine, which increases heart rate. Pray for me, considering I start grad school in two weeks.

There are also many factors considering body position, in order to simplify the pathway of blood flow. So many that it’s actually been looming constantly in the back of my mind for the past week.

And that’s felt more draining than actually having POTS. (With an “S”.) There is always something I need to be doing to keep my symptoms under control. On top of what I already knew about my joints: I have to strengthen the muscles around each joint in order to possibly avoid dislocations. Or they could happen even if I do strengthen those muscles. Honestly, this week I’ve felt like all of these treatment/prevention instructions I’ve been given are pointless and require more energy than I possess.

I’m still processing everything. I’m trying to figure out what this new diagnosis changes for my life today, my life when school starts, and my life in the field of social work.

I talked to some of you towards the beginning of these symptoms about my frustration over not being able to slow down my heart or fall asleep. These are things that you can’t succeed at if you “try.” My problem is that I want my efforts to be successful.

I also feel somewhat guilty for my mind being overtaken with this new protocol. At one point in my life, I had a similar experience of thoughts constantly looming in the back of my mind. It was when I felt bound by the law; I felt like I always needed to be doing something to please God. In a sense, I feel guilty because I’m not doing as much for the Kingdom as I am to keep myself alive.

I ask that you, brothers and sisters in Christ, pray that I would be grounded in the truth of the gospel, that I would surrender my desire for control over my physical limitations, and that I would (in the words of my friend Misty praying over me) be able to enjoy God’s presence by simply resting.

I’ll end on a more redemptive note.

About the same time we started wondering if I had POTS, I started attending a church that takes communion each Sunday. After a particularly rough week, I heard the pastor describe believers’ need to literally taste the goodness of the gospel. The Holy Spirit guided this thought progression:

By partaking of the LORD’s supper, my body consumes Jesus’ blood. By consuming Jesus’ blood, I increase my blood content. By increasing my blood content, my heart can rest. By resting in the work that Jesus did on the cross, by His wounds, I am healed.

Also, here’s my new favorite Psalm:

In vain you get up early and stay up late,

working hard to have enough food—

yes, He gives sleep to the one He loves.

Psalm 127:2 (HCSB)