I Can Get Through Anything, Big or Small
Zack LaBar’s Story
“For anyone living with a chronic illness, not just Dysautonomia, make the effort to try and be positive. If you are willing to search for them, there are so many resources available.”
Hello there. My name is Zack. I’m 23, I’m from Philadelphia, Pennsylvania, and I live with Dysautonomia and Amplified Pain Syndrome.
My story begins in 2014. An awkward, lanky kid finally getting adjusted to being a freshman in high school. I was keeping active playing soccer and was getting ready to play on our ultimate frisbee team as one of the only freshmen. I remember getting cut in the fall semester and working my butt off to make the team in the spring, and I finally was feeling great and ready to play. Then the end of March hits. I woke up one morning with a terrible shooting pain on the left side of my stomach. I thought maybe I just had to go to the bathroom or maybe I was just having a stomach ache (which I always got when I was anxious). This was different though. This pain was immeasurable. I felt like I was being stabbed in the side and it wouldn’t stop. My parents thought I may just be coming down with a major stomach bug or something. I laid low for the week taking the week off of school, but no amount of medicine or rest was helping it.
Finally, my parents brought me into my pediatrician who is the first one to tell me the thing I’d be hearing for the next 2 months. “Oh, he probably has an enlarged spleen. Go get an ultrasound and hopefully we can get this under control.” Little did I know hearing this would begin to annoy me beyond belief.
The next day comes and my mom takes me to the hospital where I was born, across the river in Princeton, NJ. We go through the normal routine with paperwork, waiting, and all the normal tests (blood pressure, heart rate, etc.) Then I finally got the ultrasound.
What do you know? All they say is “Well it is maybe slightly enlarged.” This is another thing I’d be hearing constantly. A month or two go by with me seeing random doctors telling me the same things over and over again. “His spleen is slightly enlarged.” “Let’s send him for this test or this test” Etc, Etc.
I like to consider myself a patient person - or at least since this I have definitely become more patient - but these answers (or lack thereof) were driving me up the wall. I couldn’t take not knowing what was wrong with me and I was getting more and more anxious by the day.
One day in late April, the pain becomes worse than it ever has, so my mom calls my doctor. They say to bring me into the ER associated with my pediatrician. We drive down to Northeast Philly at around 8 PM and wait for 3-4 hours in the waiting room, just to hear from a rude doctor that I may be exaggerating the pain and it’s all in my head. This sent me over the edge. I was furious and I could tell my parents were too. Another month or two go by with the pain not getting any better, and I’m surviving on liquid ibuprofen (because I couldn’t swallow a pill) and rest.
Now, I love school, I always did and always will love learning. I was frustrated being out of school and not with my friends. I was lucky enough to have an amazing guidance counselor, who figured out a way for me to go to school for only half of each day). I was able to drop my gym class and a random elective and still be able to graduate, while I just had to go to my freshman Biology class and social studies. I was happy to be back in school and with my friends, but the constant explaining to people what was happening to me, when I didn't even know myself, was getting old. I was able to finish the semester and pass with honors, which I was proud of, but still wanted to know what was wrong with me.
Once the school year was over, my family and my focus shifted to figuring out what was wrong with me. I had multiple tests done, including some that I didn’t even know existed- like a test where I ate “radioactive” scrambled eggs and every hour they would do an X-ray of my stomach to see if I was processing food correctly. What do you know? That was normal too.
In July, I had another day where the pain was worse than ever before, so my doctor told us to head to the ER. This time, at my saving grace, the Children’s Hospital of Pennsylvania. I remember it vividly, we arrived and my dad dropped my mom and I off at the ER entrance, where we waited for about an hour before being seen. We were in the actual ER for less than an hour until they admitted me, to which we all looked at each other thinking this may be the time we finally get answers.
Night begins to fall and I know since I was admitted, this means we are going to have to stay overnight, which made me super anxious. The night went as expected, being hooked up to machines and getting maybe 2 to 3 hours of sleep. I was woken at 7 AM for another CAT scan or MRI (something that I’ve already had done). I also got some blood work done, which never bothered me, but I just wanted to go home so badly that I was annoyed.
After playing every game on my phone, a doctor who I haven’t seen during my entire stay walks in and introduces herself. Her name was Dr. Oana Tomescu and after being told my symptoms, she thought she had the solution to my problems. It was the first time I ever heard the term Dysautonomia and now it’s a normal part of my vocabulary. Dr. Tomescu works in the Adolescent Medicine Department at CHOP and Penn Medicine who I consider my life savers. After that ER visit, which I initially thought was going to be another pointless trip to the hospital, they were able to help me control my symptoms as well as help me live a healthy life after diagnosis.
On a daily basis, I still struggle with little things here and there. Especially when it’s hot out, I struggle maintaining a low body temp and am forced to drink lots of water and electrolytes. Sports injuries are also a struggle for me, as with my Amplified Pain. A sprained ankle that would normally keep someone off the field for maybe a couple weeks to a month, could take me up to two months to heal. My diet is pretty normal with a normal intake of salt, but I am very good at knowing when I need a bag of pretzels or goldfish. I think one of the biggest takeaways from living with a chronic illness for almost 10 years, is knowing I can get through anything big or small, as well as learning how important patience is.
Since my diagnosis, I’ve had a few flare-ups, highlighted by more stomach problems and experiencing double vision for 6 months. But I have been lucky to have my family, friends and doctors by my side the entire time. I have been grateful to graduate high school and attend my now alma mater, Arcadia University, where I graduated this past May. I was able to get back into Ultimate Frisbee and have been playing for the past 8 years, while traveling around the country to play.
Thank you so much to Ella for allowing me to share my story. I am so happy to be able to share my experience. I acknowledge that I am one of the lucky ones, whose time to diagnosis was short. I am forever grateful for my family and friends, and especially the doctors for pushing to find answers. As Ella and Diana have shared, it’s very easy to feel alone and anxious while living with chronic illness. Since my diagnosis, I’ve found more and more people like me and it makes me feel a lot better knowing I’m not alone and I don’t have to go through this alone.
For anyone living with a chronic illness, not just Dysautonomia, make the effort to try and be positive. If you are willing to search for them, there are so many resources available, not just medical staff. Dysunderstood is the exact way to relate to others like us and have our stories heard.
Thank you to our primary sponsor, Vitassium by Salt Stick.
Audio Accessibility Feature brought to you by Nurse Mates®.