Name: Alexandra Hackney
Hometown: New York, New York
Occupation: School psychologist
Time Running: I’ve been in training and running consistently for two and a half years.
I was diagnosed with chronic juvenile dermatomyositis (JDM) when I was 8 years old. JDM is a disease in children that causes skin rash and muscle inflammation. The weakness was the first symptom we noticed. It came on with a vengeance and was tough to get under control. I had to give up soccer (which was my passion) and all sports.
I couldn’t bend over to pick up objects, raise a brush to my head, or sit cross-legged on the floor. People actually had difficulty understanding what I was saying because the muscles involved in speech production in my throat were so inflamed and weak. My mom had to help me wash my hair for a period of time because it hurt too much to do certain activities.
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I also developed a reddish rash around my eyes, cheeks, knees, and elbows, and the cuticles on my fingers were inflamed. For me, the rash was the one symptom that always impacted me most. It didn’t really start to get better until I was in college.
Throughout the years, the symptoms would get better and the doctors would wean me off of the many medications I was taking and then another flare-up would happen. In 7th grade, things were looking great, and I had gotten back into playing soccer after a few years. I also lost weight from the high dose steroids I was taking. But sadly, I had another flare-up and had to give up soccer again.
After that, I was afraid and reluctant to do any exercise, thinking that I was just going to become weak again. For many years, I dealt with the side effects of not only JDM, but the medications I was taking. My appearance was very different with the red rash and “moon face” from the steroid, prednisone. So I concentrated more on doing well in school because it was something that was always within my control.
I started taking prednisone at age 8 and stopped at the age of 20. In 3rd and 4th grade, I missed every single Wednesday of school to go to the hospital to get IV infusions of steroids, which would last all day. I finally stopped receiving IV treatments when I was in college, and got a port placed in my chest because my veins were giving out from being stuck with needles so often. I was also on and off numerous medications over the years, because doctors said they worked for patients with other similar diseases.
My boyfriend, Ryder, and I started running together in October 2019, a couple years after college. We watched our friend run the Chicago marathon, and I said to my boyfriend, “You know, we could do that!” A few days later, he was already looking up half marathon training schedules for the both of us.
When I first started running, it was more than tough. It brought me to tears in the beginning because the feeling of building my muscles back up was so reminiscent of what it felt like to be weak with JDM. I also was hesitant that doing the training may, in some way, cause another flare-up, but I kept pushing.
At first, I was probably running every other day and no more than 3 miles. I was obviously really slow at first. Our first race we ever did was the five mile “Run for Blue” race in Philadelphia. If I remember correctly, I was able to run that in just under an hour. Since then, I’ve really built up my speed and stamina. We use Strava to track our runs, and just this month, we completed the 2022 United Airlines NYC Half using a Runner’s World training plan.
Before COVID, we had all of our races lined up to qualify under the New York Road Runner’s New York City Marathon 9+1 Program. We were able to do two in-person races before everything went virtual. The 2021 NYC Marathon was our first in-person race that we were able to do in a while.
I think what attracted me to running a marathon was that it was such a seemingly unattainable goal. I had also been trying to get back into shape but could never really stick with a routine. Doing the training together and doing the 9+1 program through NYRR to run the NYC marathon really made me stick to it.
Currently, I’m running five times a week with long runs on the weekends. My work hours are very long, so I’ve been doing a lot of my training this winter at the gym because it’s dark by the time I get home. I’m looking forward to the warm weather and doing more runs outside!
Ryder and I will also be running the Berlin Marathon in September 2022. We’re a part of the Hit of Happiness (HOH) team. HOH is a happiness blog operated by Brian Dubow who has run multiple marathons in addition to an Ironman Triathlon. We’re extremely excited to complete our second marathon, and our end goal is to complete the Abbott World Marathon Majors!
Running makes me feel like I can conquer anything! It makes me feel strong, confident and proud to be me, my past included. I also feel so proud to call myself an athlete today. I feel thankful that my body allows me to run today and I won’t take that for granted. I’ve been fully medication free since I was 23 years old! I also have virtually no symptoms since being medication free.
These three tips have made my running journey a success:
1. Make a plan and stick to it
My boyfriend and I have our schedules hanging on the fridge and we just hold each other accountable. My job is very stressful and tiring and there have definitely been days this year where I’ve needed a mental health day. But we always make sure to make those runs up.
2. Stay hydrated
3. Be kind to yourself
Not every run has to be medal-worthy. It’s okay to not have the energy to be fast every run. Sometimes getting the training runs done is what counts. Just getting out there and getting it done makes me feel proud.
Everyone has a story. If you’re going through a hard time, please know that there’s a light at the end of the tunnel. Don’t give up your fight, be kind to yourself and others and your future self will thank you!
Alexandra’s Must-Have Gear
→Brooks Ghost 14: I LOVE my Brooks Ghost running shoes! I’ve tried others but always go back to Brooks.
→Honey Stinger Energy Chews: This offers great fuel for the long runs.
→Sunzel Biker Shorts With Pockets: They’re so comfortable and hold my phone so nicely. (I don’t like running with the armbands for holding your phone.)
→Strava: I use this app for tracking all my runs.
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