Thirty-One Faces of Hope: Jordyn Clark
The lupus community includes people living with lupus, friends, family, and supporters across Georgia. For Lupus Awareness Month, we would like to highlight some of our lupus heroes and champions.
Meet Jordyn Clark
My name is Jordyn Clark, and I am 33 years old.
I was 19 and I was just entering the fall semester of my sophomore year at The Savannah State University. Like most of my friends at school my priorities were mainly “How many hours of sleep will I get if I go to this week’s big party and want to make it to class on time the next day?” Little did I know my priorities would soon shift drastically. I remember the day like it was yesterday. I in fact got exactly 2 and a half hours of sleep after the party, but I made it to class on time(barely). The heels I decided to pair with my outfit the night before were half a size to small and I paid for it the next day. Walking back to my dorm from class my feet were killing me, so I stopped at the closest bench to take a break and check my phone. When I sat down and reached down to scratch my ankle, I noticed a small rash. Oh great, I initially thought, I must have gotten bitten by a spider or a bug of some sort.
I made it back to my room and immediately jumped in the shower, to rinse the typical Savannah humid day away. As I was showering, I noticed the rash was larger than I thought. Although I was now in college every now and then I still very much need my mother’s sounding voice to rationalized even the smallest of things. I called and told her about the rash. She told me to avoid scratching and it should go away in a few days. Over the next couple days not only did the rash get worse but my legs began to feel sore and tender. After trying to suffer through the irritation for a few days I decided to go to the ER in fear I was bitten by something dangerous. The doctors ran a few tests and confirmed my assumption of it being a spider bite. The doctor gave me an antibiotic and sent me home.
The next morning, I woke up and couldn’t walk, I remember trying to brace myself before I fell, and my arms were just as weak and sore as my legs. I crawled back to my bed to get my phone and called my mom in tears not understanding what was going on with my body. By this point the rash had now spread to both legs and I couldn’t lift my arms. My mom’s voice was a tone that I could tell she was trying not to sound panicked for me, but I could hear her concern. I took Advil as she advised, and I fell back asleep. I woke up and some of the soreness had worn off, so I decided to try and take a shower. My hair had been in a tangled bun for days and I desperately wanted to wash it. The shower was a fail. I couldn’t force my arms high enough to reach my hair. In that moment I thought back to my entire life and how much simple movement I took for granite. After the water hit my body for a while, I decided this wasn’t going to happen. I slowly staggered back to my room and decided I needed to go back to the hospital. Thinking about the process of just getting down the stairs to leave felt impossible and I decided to call an ambulance. I remember my outfit was a very loose-fitting nightgown (The only thing I was able to get on) and my hair had not moved out of the tangled frizzy nest that had been there for far too long. When the EMT arrived, they had to carry my out of my building and into the ambulance. Tears filled my eyes as they placed me in the back. The combination of emotions was fear, embarrassment for not being able to simply walk down the stairs, confusion and most prominently pain! I sat in the hospital for hours before I was seen. I tried to keep my worrying mother updated but the service in the hospital obviously wasn’t the best. Once I was finally able to see a doctor more tests were run and the spider bite theory resurfaced.
Something wasn’t right, I felt it in my gut when he said it. This is not a spider bite. I felt pain and tenderness at this point in every part of my body. They gave me more antibiotics and pain medicine and sent me back home. It took me 45 minutes to climb a total of 12 stairs, ill never forget that there were 12 stairs because it felt like 10,000 at the time and I counted how many I had left as I completed each one. I called my mother and broke down. I was exhausted, my body was exhausted and I couldn’t even describe the pain to her. I could hear the movement in her voice as she told me she was on the way. 4 hours from Atlanta made me for the first time wish I would have stayed a little closer to home. My mother must have been doing 100 mph because she and my dad made it to me in a little over 3 hours. My dad carried me down the stairs and into the car. It was the longest car ride I’ve ever been in (That says a lot as we frequently traveled halfway across the country growing up) I couldn’t get comfortable… The pain was intense.
When we made it home it was in the middle of the night and my dad carried me out of the car and up the stairs to my room at first, then my mom insisted he put me in her bed. Being in my moms bed suddenly soothed a lot of the discomfort from the car ride and I instantly fell asleep. I woke up to my mother rubbing my legs the next morning and examining the rash. She brought me breakfast which was on the table next to the bed. The simple pleasures of being a college student and rolling over to a home cooked meal instantly brought a smile on my face. I reached for the plate and was instantly brought back to the reality of the situation when my arm couldn’t make it. The emotions came back like a ton of bricks. I was again embarrassed, not being able to do simple things for yourself, walk downstairs, wash your hair, eat your food… it becomes overwhelming. Mommy saw my eyes and before a tear could drop, she jumped up into action. She combed my hair and helped me get dressed. Daddy carried me back down the stairs and into the car. Once I was in the hospital and was finally seen, Mom gave the doctor the full backstory. I could see her trying to hold back emotions and frustrations with the doctor knowing this is not his fault, but also needing answers. 10 days. I was in the hospital for 10 days and had many tests. At the end of the 10 days, I had regained most of my strength and was relieved. Maybe it was a spider bite and it just had to fully get out of my system. Whatever it was it was gone now, and I can get back to my normal life. My final day They told me they had to analyze all my labs and I would have a follow up appointment scheduled in the next few days, but I seemed well enough to go home until then.
I couldn’t stop smiling for the next couple of days I could eat, I could walk up the stairs, I could play with my dog since I was home., I could be me again. The day of the appointment, there was a nervousness that overcame me as I waited in the waiting area. I was waiting to see a rheumatologist, which at the time I had no clue what that was. The nurse brought me and mom back into the doctor’s office where the doctor was already waiting. She greeted me with a bright warm smile which eased my nerves more than she probably even realized. We sat and she began talking and explaining the test. Lupus! You have systemic Lupus which is an autoimmune disease. I froze, It was almost like a scene out of Charlie brown where the teacher was talking (wonk, wonk, wonk, wonk) I couldn’t hear anything else she said. In my head my thought were going a million miles an hour. How did I get this? Why have I never heard of this?
She stopped talking and looked at me. “Is it curable?” I asked. “It is a treatable disease but there is no cure”.
My heart sank, my mind went blank and I felt as though I was hovering over my body. I’m 19, how do I process this? Mom started asking questions which I didn’t even hear. The doctor gave us a lot of informational pamphlets, prescription breakdowns, doctor recommendations and a folder full of other information. I walked out of the office like a zombie, and the car ride was quiet. Mom and I were both processing. It was difficult trying to relay the news to my dad and sister, because I still had so many questions myself. Within hours we had all googled so much information we began to realize how serious the situation was. Just like anything in my life we went into this as a family. From that moment on we as a family had Lupus, not just me!
Over the next 14 years that circle of support has never wavered. It has grown bigger and deeper. Everyone that has come into our lives has either been educated and introduced to this cruel disease or has educated us even more. That little 19-year-old girl was terrified and to be completely honest I can’t say that I still don’t have my moments at 33, but the best decision we could have made as a family was to be a part of the Lupus foundation. To be in the company of those who are fighting and the family units just like mine who are fighting the fight right alongside all of us. To go to Lupus events and see the sea of purple warms my heart, So I wear my purple ribbons with pride because I know I am never alone. This family is big, and we are mighty!
Thank You to Our Generous Sponsor
Choosing to prioritize your kidney health might be uncomfortable, but the reality is that up to 30% of people who live with lupus nephritis may experience kidney failure, which can lead to dialysis or even a kidney transplant. Luckily, there are steps you can take now that may help, such as scheduling routine tests and asking your doctor about treatment options. Talk to your doctor to learn more about routine testing and treatment.