“Growing up I was a go-getter. A typical type A, or nowadays known as a type 3 on the enneagram..I got validation and worth by working hard and getting good grades. It gave me purpose and confidence. I say ‘I was a type 1’ because while some say don’t let diseases define you, there are some aspects of your life that are undeniably different because of chronic illness and it is out of your control.
The first diagnosis I ever received was general anxiety disorder. I was 17 years old. I remember getting my ACT score… I studied so hard. Then one day after taking the ACT for the second time I received my score. I started spiraling, feeling like I was drowning. Despite working hard my score fell into the range of ‘you aren’t smart and you’re not going to the school you worked so hard to get into.’ It was one test…but, it felt like my future and worth was tied to this one dumb test. I won’t get into the details, but I felt like I needed to be punished. I felt like how could I not do better when I did everything I could to succeed? It was the first of many times I would be humbled by trying so hard, but not succeeding. The first time I saw a therapist was after that incident. I also started medication when therapy wasn’t enough.
Thankfully, God’s plans are better than our own. Me not getting into the college ended up working out. After my freshman year of college I transferred to the University of Miami, where I started dating my husband, Scott. We grew up in the same town and have known each other since I was 2. It was meant to be. We got married and moved to Wake Forest, NC. 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 my students learn to read and write…and teaching in general, but it was extremely exhausting. I caught every sickness that was going around, even the swine flu! By February my whole body hurt everyday 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 that 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.
When my body became slightly 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, etc. 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 had trouble standing for long periods of time. My heart rate would shoot up and I could not handle humidity. After seeing a ton of doctors, and even making a trip to the Mayo Clinic in Jacksonville, FL, I was diagnosed with POTS. Because of this diagnosis and how uncomfortable I was in humidity we made the decision to move across the country to Southern California for a dryer and more predictable 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 back in 2012 and many still don’t today.
My body definitely liked the SoCal climate. So, we tried for our second child and God blessed us with another son! This pregnancy was a bit more challenging. At about 6 months we learned that 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 ok! Praise God!
Post Luke’s birth my body never really got better. I started to get rashes on my face, the fatigue was stronger, I would gain a lot of weight and then lose a lot of weight without trying. After 3 years and several rheumatologists later (as I mentioned, finding 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 high risk and serious. It can affect every single part of your body including all of your organs and mental health.
All these chronic illnesses will last my entire life. There is no cure for any of them. The chronic-ness of these diseases cause me emotional and mental grief. Rhupus may change or go into remission at times, but it is emotionally and physically exhausting to constantly be on top of it all. All of the specialists, all of the medications, the constant blood work and imaging. Thankfully, I found a wonderful psychologist that is helping me deal with my anxiety and medical trauma I have experienced. My relationship with Jesus helps me a lot too. He is my hope and my salvation. I’m very thankful to know Him and have His Truth.
I’m still trying to get my RA and Lupus under control. Hilarious/not hilarious… I just had a total hip replacement 5 weeks ago… Not something I ever thought I would have at 34 years old, but if chronic illness has taught me anything, it is to advocate for the best quality of life, to laugh and to take it one moment at a time. I believe that God has a purpose for all this pain and I’m grateful for the healing I am experiencing post hip surgery. I’m getting stronger each day and one day I dream of going on a hike! I even got super cute new hiking boots for my birthday. My husband and boys are my motivation and without them I don’t know where I would be.”
Krissy