I had the opportunity recently to photograph a young girl that touched my heart. Alex’s story is one of adversity, bravery, faith and hope. In this post, she shares her story of dealing with both Psoriatic Arthritis and P.O.T.S. (postural orthostatic tachycardia syndrome). Alex will also talk about how she shares her message of bravery with other young people.
What is psoriatic arthritis and how does it effect your daily life?
Psoriatic arthritis is a type of arthritis that's accompanied by psoriasis, which is an inflammatory skin disease. When I was six years old, guttate psoriasis covered my entire back from my neck down to my hips. It's incredibly uncommon for this to occur in children, and there is about a thirty percent chance that you will develop arthritis roughly ten years after having psoriasis. For me, the joint pain began presenting itself when I was thirteen. I was diagnosed with psoriatic arthritis at the age of fifteen, and it has been an experience, to say the least. Spring of my ninth grade year I experienced my first "flare up", which basically means your immune system freaks out and makes you feel like hot garbage. The worst part was when my jaw locked up and I couldn't talk, chew, smile, or open my mouth more than half an inch for two weeks. On top of that, it felt like my body had been run over by a truck. Then thrown out the window. Then pulverized in a blender. And maybe run over again. My knees have always given me the most trouble, but I also experience pain in my ankles, hips, wrists, fingers, elbows, and toes. I couldn't walk for almost two months last year, and I have holes in the heels of my shoes from scraping them on the ground because it was too painful to pick my legs up to take a step. I'm glad to say that I have improved significantly since then, but I still have accommodations that make daily life easier. For example, I use built up grips on pencils because it's difficult for me to pinch my fingers close together. I also have to carefully ration my time because one thing I didn't realize about having arthritis is how quickly you become exhausted. There's a laundry list of medicines and supplements that I take every day, but the biggest ones are Orencia and methotrexate, which are both injections that I do once a week. Methotrexate was originally developed as a cancer drug, so it makes my hair fall out and causes me feel quite horrible. However, I am so grateful for how far I've come since last year and for my amazing friends and family who never left my side.
Tell me about your experience with P.O.T.S?
P.O.T.S. (postural orthostatic tachycardia syndrome) happens due to a malfunction of your autonomic nervous system. Essentially, autonomic functions, such as monitoring heart rate and blood pressure, don't work properly, leading to dizziness, nausea, migraines, fatigue, and passing out. I was diagnosed with P.O.T.S. December of 2021 after experiencing chronic dizziness and exaggerated increases in my heart rate for about three months. (I also decided to be unnecessarily dramatic and give myself a concussion when I passed out.) Unlike arthritis, there aren't really medicines to treat P.O.T.S. The most common recommendations are to eat salt and drink lots of water, but this doesn't cure exactly you. My heart rate nearly doubles when I stand up, so I get incredibly dizzy and often lose vision for several seconds. This increase in heart rate together with a drop in blood pressure is what causes you to pass out. Exercise raises my pulse to an abnormally high bpm (beats per minute), causing me to lose vision or throw up. Once I threw up on a guy's feet at the gym and he moved to Florida the next week. (I really know how to make an impression). In spite of this, I am able to continue doing most of the things I love, and even some I don't love. Like going to the gym.
Talk about your knitting and sewing. How did that begin?
Sewing and crocheting have been the greatest distraction for me this past year. I've been sewing for my American Girl Dolls since I was nine years old, but I didn't start making clothing for myself until November 2020. I picked up crocheting fall of 2021 and made the cardigan and teddy bear in this picture. To pass the time during rehearsals for JA's fall musical, I would crochet little things in the hallway. (That's where I created my first bee!) I also made this gold dress, which I wore to my school's winter formal dance this year. I use built-up handles on my crochet needles because it hurts my hands to keep my fingers in a fist for an extended amount of time. Another reason why crocheting is great is because it keeps my hands and mind occupied when I'm in a lot of pain.
Explain Bee Brave and what it means to you?
"You're so strong." This is a phrase that I have been told countless times over the past two years. "You're so strong for dealing with this. You're so strong for staying positive. You're so strong for not giving up." Although the intentions behind saying these words are always good, hearing them doesn't always feel like a compliment. When you're lying on your bathroom floor sobbing, physically unable to stand back up, the last thing you feel is "strong". When you're screaming into your pillow and want to punch the wall because everything seems so unfair, the last thing you want to be told is, "You're so strong for always seeing the bright side." In my opinion, there are some times when it isn't possible to be strong. And that's ok. However, there is one thing that you can always be: brave. That's why I started crocheting these little bees to give to other kids with chronic illnesses. They fit in the palm of your hand, making them a perfect thing to hold onto while getting/giving yourself a shot. You don't always have to be strong, but you can always Bee Brave.
“When I look at this picture, I imagine all of the weight being lifted off of your shoulders until you feel so light that you can fly.” - Alex Guild
Any final thoughts you would like to share?
There's a line I really like from A Farewell to Arms that says, "The world breaks every one and afterward many are strong at the broken places." It's such a cliche paradox, but pain truly does make you stronger, and I wouldn't trade my body for a healthy one even if I could. I firmly believe that God works all things for good, and I feel so blessed to have had this experience where I can truly trust in Him and rely on His strength, not my own. It's ok to break. It's ok to cry. It's ok to be angry. But through it all, don't forget to Bee Brave :)