“Just a regular check-up”

July 2019: That was when all of my pain began to gather together. I couldn’t escape it, but I could ignore it. So I did. For months I pretended as if everything was normal. I had gone to so many doctors’ appointments and I was tired of it.

October 2019: My last straw. I was in off season training for softball. I was constantly active, and I would work out for hours each day. Alternating between weight-lifting, cardio, and skills training, my pain became unbearable. I held back tears every day during practice. I had to fight to continue smiling, to continue laughing. Eventually, the pain became so bad that I cried to my parents for days, begging to go back to the doctor. “You’re just being a drama queen” they’d respond. It wasn’t until I collapsed in a Walmart parking lot, then down the stairs later that same day when my mother finally started to see what was in front of her. I was falling apart, and she was standing by, allowing it to happen. My mother, reluctantly of course, called the doctor’s office yet again. They asked if it was urgent, she replied with a quick no. “Just a regular check-up.”

2 weeks later, I walked into that office. To this day I have no idea how I managed to walk, but I remember death gripping onto anything in sight. I walked in, and whenever my doctor asked my mother to step outside, I let it all out. I told her about everything. All of the pain, my multiple falls, everything. By the end, my mascara was everywhere but on my eyelashes. She listened to me, and I was shocked. That had never happened before. My parents, friends, teachers, coaches, they all brushed me off. Yet she, a complete stranger, sat there and listened attentively. Now if you say, “well that’s what doctors are paid to do.” Then let me tell you, you’re extremely lucky. Numerous doctors have refused to give me medical care, or even to listen to me. Before I had the chance to even tell them about my symptoms, they had already diagnosed me with growing pains or PMS. Take my word for it and believe me when I tell you that it’s absolutely heartbreaking. So when this doctor listened to me, I couldn’t help but sob on her table. She told me that she was very sure that I had Rheumatoid arthritis, but since she wasn’t a rheumatologist, she couldn’t diagnose me. My mother barged in, demanding to know what was taking so long. My doctor began to explain that all of my symptoms matched with rheumatoid arthritis. She sat there in complete disbelief, just looking back and forth between the doctor and I. “I thought they were growing pains. I thought she was lying” she repeated. At that moment, I felt as if I had been given wings. Not to fly away, but to fly closer to the end. I thought that I was an arms length away from a diagnosis. But oh… how I was wrong.

-Sam

Why Me?

Sometimes I think to myself, “why me” and really, I honestly don’t know. Hypermobility is inherited, but many remain asymptomatic for the entirety of their lives. What I couldn’t comprehend is, why me, why did I have to become symptomatic at such a young age.

At 12, I began to show symptoms. I had very intense pain in my right elbow. I disregarded it, thought it was caused by softball. Doctors later diagnosed it as tendinMonths later, my left elbow began to hurt as well. I didn’t know why, as I’m right hand dominant. Years later, I learned that that was my first symptom.

At 13, I had x-rays, MRI’S, and ultrasounds taken of both of my knees. Doctors first told me I was being over dramatic, and since I had just started my period, they blamed it on that. I was forced to advocate for myself, and after many appointments, one doctor decided to take an ultrasound, which led to an x-ray, then leading to an MRI. I had tendinitis in both of my knees and a partial meniscus tear in my right.

At 14 I had severe pain in my hips. Again, I saw multiple doctors. That was a dead end. I received no help, no treatment, and no diagnosis, despite my extreme pain and constant dislocations. They ruled it as an exaggeration and it was simply growing pains. However, I grew up with severe growing pains, and I knew that it was something entirely unrelated. I spoke up, and was quickly shut down. “I’m a doctor, I studied this. I see kids like you all the time” I was told. So I gave up.

At 15, everything piled up at once. My shoulders would constantly slide out of socket. My elbows were in pain all the time that I couldn’t sleep with my arms fully straight or bent past a 90 degree angle, as they would be stuck in the position they were in while I slept for a couple of hours after I woke up. My wrists were constantly stiff and I had extreme pain in performing simple tasks such as writing my own name. My hips, again, were in constant pain and they would dislocate quite often. My knees would pop extremely loud, occasionally sending me to the floor. My ankles for years have popped extremely loud. So loud you could hear it from across my home. My family would jokingly say “I wonder who’s coming” as I walked out of my room. With each step I took, a loud pop took place. With that loud pop came excruciating pain. It felt as if I was spraining my ankles with every time. I lived like this for months, almost a year. I would tell my parents that I wasn’t okay, but they also told me I was “a drama queen” and that it was growing pains. “I know how you feel, I had growing pains growing up” my mom would say. Every time she said that felt like a blow to the gut. They refused to take me to the doctor again.

Every second, every minute, every hour, every day, I was in constant pain. I developed a tolerance to Aleeve. I started off taking 4 pills as the bottle instructed. Slowly, I worked my way up to 10 a day, until it simply provided no relief. Every joint in my body hurt, and I held back tears all the time. I was at my lowest point. Why me? I constantly thought. No one else in my immediate or extended family had gone through what I was, and still am experiencing. It was soul crushing. Awful. And I would never wish that experience upon my worst enemy.

-Sam

Introducing myself

Hey guys! My name is Sam and this is my first ever blog post! I’m a high school junior with hypermobility syndrome, which tends to make things a bit harder for me. Despite that, I play varsity softball and I play the violin in my school’s symphony and full orchestra. I recently decided to share my story publicly because upon my diagnosis, I realized that very few people have shared their stories about living with hypermobility.

For those of you who don’t know what hypermobility syndrome is, it’s a musculoskeletal condition where my joints, ligaments, tendons, and muscles are too flexible for my own good. Haha, how ironic… I used to dance for 11 years but quit about a year ago for 3 reasons. 1. It was too time consuming and I couldn’t focus on my schoolwork. 2. I was in constant pain and thought that dance was the cause. And 3. my personal fav… I wasn’t flexible enough. I could barely do my right and left splits, I never even got close to my middle, and my back is as stiff as a wooden plank. That’s not exactly ideal for a dancer…

Anyways, I figured if anyone was facing a recent diagnosis of hypermobility, reading my blogs might be a bit comforting, to know that they’re not alone. Because God sure knows I felt like I was. The past few months, hell, the past few years have been extremely difficult. For that, I wish to be a big sister to those with my condition, or even with other chronic illnesses, because it does get difficult, and you may feel alone, but I’m always here to help. Now…I think that’s a fairly detailed intro, let’s get to the good stuff 🙂

-Sam

Walking with a cane

Learning to balance is done at a young age. You must be able to balance before you are able to walk, right? What if I told you that wasn’t the case? Crazy right? I believe that we don’t truly learn how to balance until life throws us a curveball. Because life without imperfections is like walking with 2 canes.

No one really learns how to overcome grief until the loss of a loved one. There’s things that can be taught, like algebra. Other lessons, must be obtained through personal experience. If someone would’ve told me that years, even months ago, I would’ve laughed and disregarded it. Now, I’m a firm believer of it. Possibly because I physically had to relearn how to balance, but also because over the course of the past few months, I’ve been forced out of my comfort zone. I would fill my days with activities and work to allow myself no time to think about what I was going through. With quarantine, everything has changed. I now have time to solely think, and that truly brings me unease. I think about all of my symptoms that have been knocking, just waiting to be revealed for years now. I think, “is there anything I could’ve done to prevent all of this pain, unease, mental instability?” Frankly, the answer is no. No amount of milk, veggies, or Advil could’ve done anything to prevent my diagnosis. And I wish I would’ve learned that much sooner.

-Sam