Going out for a run and coming back with lupus

Almost 10 years ago (wow is that a crazy thing to say), I decided as a high school senior that I wanted to go for a run on a warm December day for some completely unknown reason. The run itself was a pretty average one, except that I felt a little more winded than usual. It was when I finished that I noticed something was wrong. I went upstairs to my room and couldn’t catch my breath, I laid on my floor for about an hour not able to get a real breath in. Yeah, running wasn’t exactly my favorite, but I had played soccer my whole life so I was use to it, bu had never experienced anything like this before.

I told my parents that I thought something was wrong and luckily they took me pretty seriously right away. I went to the GP within the week and during that time, my breathing was starting to struggle more; just walking down the hallway at school was becoming hard. If I didn’t walk at a glacial pace, I would be completely out of breath by the time I got to my next class. My GP was also pretty concerned with how quickly my breathing deteriorated, I went to two appointments with him to track it before he sent me off to get a blood test.

The blood test he ordered was called a D Dimer test- to this day I still don’t really understand what it does, but I do know that this test made me realize how serious things could be. I went for the blood test and before I had even made it home, my GP had called my mom’s cell phone and our house phone to tell me to turn around immediately and go back to the hospital for a cat scan. Apparently my numbers for this test were off the charts and they were scared I was going to have a pulmonary embolism. I didn’t have any idea what that was (and didn’t really want to know at that point), but I knew it was serious. And things got even more serious in my mind, when my dad, who was an EMT and at work, called and said that he was going to meet us at the hospital for the test. My dad was the type of guy who didn’t leave the soccer practice for my rec team he coached when my 2 year old brother split his head open and needed stitches.

I cried the entire drive to the hospital, while in the waiting room and during the entire cat scan and I am not a person who cries easily. The only time there weren’t tears streaming was when the nurse made a joke about how I was going to ‘pee my pants’ and that’s how I’d know the dye was moving. She was totally right; it felt exactly like I was peeing. The test came back totally clear, there was no blood clots anywhere. My 17 year old self was just coming to grips with how much my life could truly change even though I got a negative test result this time.

By the next time I went to the GP, I would describe my breathing in terms of how heavy the metaphorical person sitting on my chest felt. It would range from toddler all they way to what I termed morbidly obese (which I know not very PC but I was young, in pain, and needed a way to describe it that people would understand). The 'person' on my chest would change but there was always someone sitting on it. By this point, I had finally convinced the mean nurse that I wasn’t faking it, but no one knew what was up. To top it off, I was starting to have trouble using my hands. But that was promptly ignored because breathing was a bit more important. Several asthma breathing treatments were tried with no success; if anything they made it even harder for me to breathe.

The diagnosis

I finally got referred to a rheumatologist and, somehow, my mom was able to get me an appointment with the head of pediatric rheumatology the next week (my mom is seriously the best). I honestly don’t remember much from that first appointment. At this point, I was constantly exhausted and all of my mental energy was going into thing how good looking this doctor was. Teenage Jen had her priorities straight. But he did a lot of tests and then took lots of blood and that’s about all I remember.

The nurse called a few days later and said I needed to come back in. Now this appointment I can tell you I remember zero of. I was being told I had a lifelong chronic illness, lupus, but I swear I was in another dimension while all of this was being talked about. At the end, I was told I had options: take pills that could take 6 – 8 months to make anything better or start a six week infusion based super steroid treatment that would start making me feel better before I even finished it. Now as someone who wanted to be ready to pole vault at the first meet in 3 weeks but also hated needles, this was actually a pretty tough decision. But in the end, I decided to suck it up and deal with the needles to get myself feeling better.

The medication

Those next six weeks were some of the hardest ones I’ve dealt with. Not only was I missing a full day of school once a week (I was a nerd so this hurt), but I also had to sit with a needle in my arm while my mouth tasted like pennies. While I couldn't do anything about the first two, I was able to combat the taste by eating goldfish, drinking blue Gatorade and sucking on grape, cherry or blue raspberry jolly ranchers. We made a routine of it, I would get my infusion with my snack bag and then we would stop at Wendy’s (I would get the 4 for 4 before it was cool) and I’d get dropped off at school so I could go to track practice.

I was really determined and wanted to see out my senior year pole vault season that I had worked to hard for. Of all the sports I had tried out throughout my life, pole vault was the one I loved the most and the one I had the most potential in. I was so excited for my senior year; I had trained so hard to get myself where I was and the thought of it all going up in smoke was not something I had come to terms with. I tried my best, but one of the symptoms of lupus and one of the side effects of the meds was insane energy loss. I would do half of the warm up with the whole track team and then get through maybe half of the vaulting practice before I was done. That was so unlike me too, I use to be the vaulter who stayed til the end and sometimes after practice to get more reps.

It was the second meet of the season when I realized it just wasn’t going to work. I surprisingly cleared 3 bars that meet (6 feet, 6.5 feet and 7 feet – pretty wimpy stuff for me), and that was all I could do. I could jump 7 feet during practice the year before no problem, but this year I could barely get it. On my second jump, one of my teammates ran up and was like “Jen that was so cool, you literally stopped running and then just jumped while standing still and made it over the bar!” He was weirdly impressed by something that should never happen. It’s pretty dangerous to stop your run, but I knew that I would regret wasting that run if I went back, so I just went for it. This is when I started to realize that I wasn’t going to be able to finish my season. The next week I turned in my uniform amidst plenty of tears, swearing that I would come back for the meets to cheer on and provide feedback. I never ended up making it back to the meets because it was too hard and I didn’t have the energy to.

The aftermath

Quitting track felt like the hardest thing I’d ever had to do, but the set backs just kept on coming. I didn’t think about the fact that I started college next year until the acceptance letters started rolling in. I had big plans to go study marine biology or ecology at a college in the Carolinas. My top choices were UNC- Charlotte or the University of South Carolina. Lupus threw a wrench in these plans too. I was unsure of how sick I would be the next year or what would happen if I started to flare (lupus getting worse) while that far away from home. There were still some morning where the arthritis in my hands was so bad, I couldn’t button jeans, hook a bra or put contacts in; I basically lived in yoga pants and sports bras that year. So going to a college that was over 12 hours away felt like a bad idea.

This ruined every plan I had for my life in one decision. I wanted to be a marine biologist living on the coast doing research, but that wasn’t exactly going to be possible while at a school in Ohio. This was absolutely crushing to me at the time; to not only have my senior year track season ripped away, but then to also have my future ripped away as well; it just all felt like too much.

It would have been really easy to fall into a big depression during these monumental changes to my young adult life. The support system that surrounded me was the only thing that kept me afloat. I had a core group of about 10 friends that would still include me in things even though they knew that I would just end up sitting there and possibly falling asleep while they acted like fools. My family was another huge support system; they helped me pick up the pieces to my life and also helped me pick up little things like the peanut butter jar so I could make a sandwich. All while not once complaining that I was a raging bitch because of my medicine; they are the true heroes here, especially my freshman sister.

And then there was my friend Antonio who still to this day does not realize just how much he helped me during that year. He was my lab partner for third period biology class and was the most upbeat person I have ever met in my entire life. He treated me like any other friend but also knew how to help me if I was falling behind in note taking or cheer me up when I was having a bad day. And he did this all without even thinking about it; it was just who he was. I still remember him literally jumping to his feet while cheering before giving me a hug the first time I wore jeans again after being diagnosed. He knew just how much I struggled with using my hands in the mornings so that was a huge deal for me and he wanted to celebrate it. Even if I told him all of this, he probably still wouldn’t believe me.

All I could do was take the rest of senior year day by day, some were good and many were bad. But having my support system around me, getting excited about the most mundane things helped sustain me. Despite everything, I still have some absolutely amazing memories of senior year: fall play, helping show choir, spending lots of time with my friends and even prom. While it wasn’t remotely what I wanted, it has shaped me into the person I am today. The qualities I love most about myself were fostered during this period of immense struggle in my life. I plan to dive deeper into some of those ways lupus changed me in a later writing because this one has already gone on too long. Thank you for reading all the way to the end and experiencing this journey with me.