‘My whole body hurt every day. I could barely bend down.’: Mom shares journey with Rheumatoid Arthritis, POTS, Lupus

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Rheumatoid Arthritis

“I was a go-getter. A typical type A, motivated by getting good grades. I was organized and a hard worker. After my freshman year of college, I transferred to the University of Miami. I started dating my now husband (even though we’ve known each other since I was 2). I finished college in 3.5 years and graduated Magna Cum Laude with a degree in Elementary Education and Geography.

We got married and moved to Wake Forest, NC. I finished my student teaching there, got a long-term sub position for a year-ish, and then in 2009, I got my first full-time job as a kindergarten teacher! Being a teacher had been a dream of mine since I was a kid. I loved helping kids learn to read and write, and teaching in general… but it was extremely exhausting. I caught every sickness going around, even the swine flu! By February, my whole body hurt every day and I could barely write on the board or bend down to read with my students. I had a very thorough general practitioner and, by the grace of God, she found my rheumatoid factor was high. She referred me to the best rheumatologist ever (I didn’t know how rare a good doctor was at this point) and I was diagnosed with Rheumatoid Arthritis. By the end of the school year, I had to retire from teaching because my body couldn’t handle it.

cover photo
Courtesy of Krissy Stephenson

Having RA affected so much of my life. Holding the hair dryer was exhausting and took a ton of spoons, gripping the steering wheel hurt a lot, and I could no longer hold a pencil or write for more than one sentence. (Look up the spoon theory for more info on how chronic illness patients use spoons to help others understand their energy.)

Postural Orthostatic Tachycardia Syndrome

I started to work from home. When I became more stable, we got pregnant with our first son! Noah was born in September 2011. During pregnancy, my RA went into remission, but I had all the typical pregnancy side effects like nausea. After Noah was born, my RA came back strong. It took a while to find a new medicine that worked for my body. I couldn’t believe how challenging doing simple things like changing a diaper or just holding my baby would be. After 6 months of being on a new medicine, my RA was improving a bit, but my body was still extremely fatigued and I had trouble standing for long periods of time. My heart rate would shoot up and I could not handle the humidity. After seeing a ton of doctors, and even making a trip to the Mayo Clinic in Jacksonville, FL (a horrible experience), I was diagnosed with POTS. Because of this diagnosis and how uncomfortable I was in the humidity, we made the decision to move across the country to Southern California for a dryer climate.

POTS is an extremely uncomfortable syndrome, and for most, heat and humidity exasperate symptoms. I could no longer work out or go on walks. I started to get dizzy and nauseated if I was doing dishes from bending and then standing. It was also very lonely because not a lot of doctors understood or believed in POTS. I was thankful I knew a friend of my SIL and she took me under her wing and told me what to do — like eat a ton of salt, stay super duper hydrated, and stand up slowly.

woman working out
Courtesy of Krissy Stephenson

My body definitely liked the SoCal climate and I was still doing okay on Orencia, my biologic for RA. So, we tried for our second child and God blessed us with another son! This pregnancy was a bit more challenging and I was watched more closely. At about 6 months we learned our baby boy, Luke, had a hole in his heart. We met with a neonatal cardiologist and monitored it closely. On June 10th, 2015, a day I will never forget for many reasons, I went into labor. We headed to the hospital and everything was stable until it wasn’t. They could not find Luke’s heartbeat for several minutes and I started to go in and out of consciousness. We were rushed into surgery and before they could even put the partition up, they had begun a crash vertical C-section. My miracle boy came out crying and I will never ever forget hearing his cry for the first time. God had saved us, he protected us, and we both came out alive and okay! Praise!

Postpartum Life And Lupus

Post Luke’s birth, my body never really got better. I started to get rashes on my face, the fatigue was stronger, and I would gain a lot of weight and then lose a lot of weight without trying. After 3 years and several rheumatologists (as I mentioned, a good one is rare) I was diagnosed with Lupus SLE in 2020 and then Lupus Nephritis in 2021. Lupus is a very intense and misunderstood disease. It is very common for pregnancies and labor to be very high risk and serious. It can affect every single part of your body, including all of your organs. After being diagnosed with Lupus Nephritis I had to fight my insurance for 3 months and spent several hours on the phone to try and get them to cover a new FDA-approved medicine for LN. Finally, I won and started taking Lupkynis about 10 months ago.

couple with their new born
Courtesy of Krissy Stephenson

It really helped my LN, but it was a really inconvenient medication to take, so we switched to Benlysta. I just took my 6th self-injectable shot last night. All these chronic illnesses will last my entire life. They may change or go into remission at times, but it is emotionally and physically exhausting. I work with several different specialists, and it is a full-time job managing it all. I found a wonderful psychologist that is helping me deal with my anxiety and the health trauma I have experienced. My RA is still something I am trying to manage and control.

Hilarious/not hilarious I’m getting a total hip replacement right before my 35th birthday. We will celebrate big.”

family selfie at beach
Courtesy of Krissy Stephenson

This story was submitted to Love What Matters by Krissy Stephenson from Claremont, CA. You can follow her journey on Instagram. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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