It has been 8 months since graduating from the Mayo Clinic Pain Rehab Program, and I continue to be 85-100% recovered (depending on the day) from postural orthostatic tachycardia syndrome (POTS) and chronic fatigue syndrome (CFS). I never would have imagined that my health could make such…
“You should exercise more.” A brutal statement. One I had tried to fulfill on my own, and time and time again, had failed. It was a frustrating piece of advice from my doctor, and felt so out of reach as I navigated my bouquet of chronic illnesses.
I am so excited to report that after graduating from the 3-week Pain/Symptom Rehabilitation Center at Mayo Clinic in Rochester and continuing the program at home, I am nearly 100% recovered!
The Valsalva maneuver is EASILY the most fascinating thing I’ve gotten to do in this entire medical adventure. On the surface, it’s a fairly quick and easy part of autonomic testing, but underneath, it’s one of the coolest and most complicated mechanisms of the human body that I’ve encountered.
With postural orthostatic tachycardia syndrome (or POTS), life is already a bit of a balancing act to keep all systems running smoothly, so as I prepared for surgery this fall, I was a bit nervous about how my body might handle it. The combination of drugs, the general physical trauma to the body, the emotional…
My sister is a rockstar. I know I write a lot about my own journey with chronic illness, and I can often focus on the ways that I am able to manage my own symptoms and challenges. But what I don’t talk much about is the ways that my family makes it possible to have…
Without a doubt, midodrine has been crucial to the management of my postural orthostatic tachycardia syndrome. Now that I have been on it for 2 months, I can confidently say that I experience significant benefits, minimal (if any) lasting side effects, and am overall pleased with it.
Living out the lifestyle changes that are recommended for postural orthostatic tachycardia syndrome (POTS) can be easier said than done. Having POTS is hard. It’s inconvenient. It is not fun. And yet in the midst of daily limitations and hourly coping, finding small yet meaningful ways to make life easier
People with postural orthostatic tachycardia syndrome (POTS) are notorious for drinking pickle juice, double-salting their fries, and even eating salt right out of the shaker. In the early days of having POTS, I certainly had a thing for salami, green olives, and eating plain lunch meat by the metric ton, followed by enormous amounts of…
What is the QSART? The QSART (Also known as the QSWEAT) is short for the “Quantitative Sudomotor Axon Reflex Test”. The goal of this test is to get a better understanding of a person’s nerve/sweat function, which can be tested by stimulating their body with electricity and collecting data on how it sweats in response.
Waiting sucks. Especially when it comes to waiting for medical answers that could very dramatically impact your life, your perspective, and everything about the future. While waiting for a full evaluation at Mayo Clinic for the constellation of symptoms I was experiencing, I often found my mind repeating “I am not ok. Something is wrong…
It finally happened y’all! I have officially received a comprehensive evaluation on my symptoms of autonomic dysfunction and the miscellaneous health issues that have been so debilitating. I was especially jazzed about this opportunity, because Mayo Clinic is known for their work with people who have postural orthostatic tachycardia syndrome (POTS)…
There are lots of ways to go about reducing the symptoms of postural orthostatic tachycardia syndrome (POTS), including lifestyle changes, medication, and even physical therapy. I had heard of people having success reducing symptoms through exercise and strength training, so when given the opportunity, I was excited to try working with a trained professional to…
When my postural orthostatic tachycardia syndrome (POTS) first started escalating, the most concerning symptoms included things like chest pain, palpitations (like my heart was flopping), and tachycardia (racing heart). Not knowing what was happening, my doctor ordered an echocardiogram, which is an ultrasound of the heart, as well as a 2-day heart monitor
As I’m sure you can understand, getting a puppy didn’t seem like a great idea when considering the reality of potty breaks, playtime, and the general activity needed to keep up with a four-pawed toddler. Especially as it pertained to me and my physical and mental health limitations with POTS, persistent migraines, and a bouquet…
I am driven by striving. In one conversation with a Christian mentor, the words blurted out before I could properly weigh them: “Striving is what makes life worth living.” I wasn’t completely wrong, but I definitely wasn’t right either. A more appropriate statement might have been “Striving towards a goal is life-giving to me,” and yet…
The first time I used a cane, I brought it to a giant craft store to “test it out” and meandered the aisles getting used to the feel – both practically (how it helped my condition), but also personally (how it changed the way I felt about myself).
It blew my mind that our understanding of postural orthostatic tachycardia syndrome (POTS) as a recognized condition is only about 30 years old. While there have been a few labels used to describe similar symptoms/conditions observed, such as “soldier’s heart,” “irritable heart syndrome,” or “orthostatic tachycardia,” it was…
I was on metoprolol tartrate for 3 weeks, metoprolol succinate for 1 week, and propranolol for one day. The experience overall was amazing, but also hard and heartbreaking. For one, the metoprolol tartrate worked. As a potsy (or person living with postural orthostatic tachycardia syndrome) it was revolutionary…
Admittedly, switching to metoprolol succinate was a bit rough. I don’t know that I’d go so far as to call it a train wreck, but we certainly wobbled on the tracks. While metoprolol tartrate seemed to give me increased ability (and unfortunately a few intolerable side effects), navigating metoprolol succinate
Oftentimes people with POTS are told, or assume, that there is no actual treatment for POTS. Initially, I was told that medication wasn’t an option, and to do my best with lifestyle adjustments like drinking more water, eating as much salt as I could manage, wearing waist-high compression, and doing recumbent exercise.
Driving is just sitting, so it’s fine – right? It’s a hard question to actually acknowledge for someone doing their best to live a normal life despite having postural orthostatic tachycardia syndrome (POTS). The condition primarily impacts women between the ages of 15-25, and certainly, there’s a lot at stake.
This poem is written by none other than my sister and friend, Sierra Wied. Having lived our lives in beautiful connectedness, I am thrilled to be able to share her musings, and am proud of how she is pressing into God’s desire for healing and hope. Enjoy!
If only I had a limp. I’m kidding of course, but in the day-to-day of living postural orthostatic tachycardia syndrome (POTS), a part of me wishes there was some sort of external manifestation of the craziness happening inside my body. When I first started familiarizing myself with the POTS diagnosis, I saw that there was…
Mental health isn’t something that is solved with 7 quick tips from a young person on the internet. I get that. The complexity of a person’s story and the depths of the needed healing are not concepts that are lost on me, and the more I live my life, the more I realize how little…
Memes are one of my favorite ways to express the humor, frustration, and experience of POTS. Check out my previous batch here. Enjoy!
When it comes to suffering or living with hardship things can get kind of complicated. When tragedy strikes unexpectedly. When there is no crime yet a punishment is inflicted. When the young feel old. When the hurt isn’t healing. What about prayer? What about Faith? What about “Be healed in the name of Jesus?”
Going to counseling is an adventure that has highs, lows, struggles, and victories. It is being known by a human being who is there to support and facilitate healing, growth, and mental wellness. It can be a process to find the right counselor, but it…
I often joke that counseling is like dating. You don’t always ‘click’ with every counselor, and when it comes time to say goodbye, it can feel like you have to artfully construct a breakup. Sometimes it’s awkward, sometimes it’s painful, and other times it’s mutually…
In November of 2022, I decided I wanted to pursue getting a service dog (read about that journey here). It was a choice I made after a year and a half of struggling a great deal with increasing mental and physical health challenges. All combined,…
The first time I learned about kintsugi I immediately resonated with the concept. It’s a tangible display of brokenness and restoration and that ambiguous “beauty from the ashes” that we often talk so much about. It looks how I feel, and the process itself quickly…
I am a human being who has been miraculously healed by God (here’s our documentary), and then a few years later developed crippling mental health problems and debilitating chronic illness. “Is it weird to be healed and then to get sick?” “Have you tried praying…
There is a distinct sense of comfort that comes from explaining a person’s experience. We, as people, tell stories, create documentaries, write poems, and sing songs about our unique experiences as human beings to invite people to be one inch closer to understanding us. We…
Memes are one of my favorite ways to express the humor, frustration, and experience of POTS. Check out my previous batch here. Enjoy!
Starting Out In the early days of my POTS adventure, I was very intense about knowing my exact heart rate at any given moment. I bought the newest Fitbit with the most features, had a SPo2 monitor, and compared the two often. It was fascinating…
Even if you have no personal experience, I want to encourage you that, yes, it is possible to equip yourself with helpful information to support your friend or family member who is struggling.
I won’t lie – going to counseling is a wild ride. It has been incredibly impactful for me and I’m so grateful to have found my current counselor, but it also sucks and is hard. Choosing to laugh instead of cry is a fine art that I am learning. Please enjoy these memes inspired by…
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…
It’s sunny somewhere on this big ‘ol planet! Though lament is still my favorite, some days get to be bathed in peppy steps, puffy clouds, and good snacks. These songs have steadied the good moods and helped my heart have joy. I hope they brighten your day!
Having POTS makes for some exciting stories, but the reality is that each and every day is a dance of navigating my limits. Tachycardia is a constant companion – doing dishes, doing laundry, showering, walking through a store, and doing stairs. Blood pressure swings are intense and abrupt – sometimes I watch it swing up…
I know what it’s like to suffer, and I know what it’s like to be healed. In 2018 my family was healed from rheumatoid arthritis, convulsions, food allergies, and more. The God of the Bible is alive, active, and real. Here is our documentary-style video telling the true story of how our health was restored…
Some weeks I left feeling like the world seemed more vibrant and hopeful, while other times I found myself fighting worse mental battles. But as time went on, there was a noticeable decrease in the number and intensity of flashbacks and nightmares. I was impressed, but still dealing with a lot of my other symptoms
I didn’t have a baby, but getting a puppy has certainly made me feel like a new parent. Please enjoy these micro-stories, as I document the little moments of raising a doggo.
Being sad is not a sin. Lament is far from popular, but for me it’s a frequent choice. Like David in the Bible who bares his soul to God in humility, I desire to be real with God – regardless of how it looks on the outside. Sometimes life is falling apart. Sometimes it’s blowing…
At one point in the process of weighing the pros and cons of a service dog I remember asking, “Am I insane to completely reorient my life around having a dog?” Before this point, it seemed bizarre that I, Kaley Faith, would take the time…
Every person, every symptom, and every day is different. But whether you’re a long-time potsy or just curious what it’s like, I hope you enjoy these memes – inspired by my journey thus far!
What is the TTT? The diagnostic test for POTS (Postural Orthostatic Tachycardia Syndrome) is the Tilt Table Test (TTT). I know, that’s a lot of acronyms – welcome to the medical field. Essentially, the goal of this test is to measure how your body reacts…