Juvenile Rheumatoid Arthritis – Bravelets

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Juvenile Rheumatoid Arthritis

Posted on February 26 2015

Juvenile Rheumatoid Arthritis
Juvenile Rheumatoid Arthritis (JRA) tried to take over my life when I was 16 years old. After ACL surgery, I was having severe pain in my groin, hands, and wrists. My parents and I didn't know what to do or where to turn, so we went to my pediatrician at the time. He referred us to a rheumatologist and suggested I see them and get blood work done. So many different diseases came up in conversation.. no one knew what was happening inside of my body. After a few months, I was diagnosed with JRA. My whole world changed, and so did my parents'. I was such a healthy child. I never missed a day of school and I was extremely active. I was a typical high school student, maintaining great grades and dreaming of my future in college. I couldn't go back to the sports I loved playing because I was in such pain. I missed months of my junior year in high school because I couldn't get out of bed. What if I can't go to college? What if this cripples me forever? I never felt so low, so angry. I'll admit, the darkest thoughts entered my mind; but I pushed through the aches, pains, and negative thoughts.

Imagine every step you take feeling like a mile. Imagine feeling a sharp, shooting pain in your hip and through your leg each time you moved it. Living with chronic pain was getting the best of me. 3 years of living this way, my parents and I scheduled my first total hip replacement. All cartilage was lost and this was the only way to eliminate the pain. I took a semester off of college to heal and it was the greatest thing that ever happened to me. I was still living with JRA, but I could finally walk without pain. I knew the other hip would need to be replaced in the near future; however, nothing was going to bring me down knowing I could walk without pain. Long story short, my second hip replacement for my other hip was scheduled a couple years after that. I received my second hip replacement the day after I received my Bachelor's Degree. So many exciting, yet scary, things were happening to me all at once. I felt a rush knowing that I could walk without pain on BOTH sides now. The rehabilitation after these surgeries was nothing compared to the constant pain I faced daily.

Now, eight years since my diagnosis, I am living with, and despite, JRA. Of recent, I have been flagged with a "high risk medical monitor" at my rheumatologist's office. My knees are the next joints to go and my ankles are weak. I have tried everything under the sun to keep this disease in remission. My efforts have failed at this point in time. I recently started a blood infusion treatment which requires me to go to my doctor's office biweekly, then monthly, to receive and IV treatment in order for the medication to go directly into the bloodstream. It's early in my treatment, but I am always hopeful.

This does not stop me from living my life - I let this disease darken my soul for too long. I walk, hike, ride my bike, and maintain a (relatively) healthy diet. After all, comfort food is comfort food for a reason! I now listen to my body when it's telling me that its tired. Some people simply don't understand my fatigue and I would never expect them too. I latch onto my support system with all of my might, because they keep me from going into that dark place I once was in. Despite this disease, I am the luckiest person on this planet because of my family and few close friends that I can always count on. I will be graduating in August 2015 with my Master of Science in Communication Sciences and Disorders. I cannot wait to be a speech-language pathologist. I've turned my fear into not being able to go to college into a fear of how will I pay off all of these student loans! :)

I was so happy to stumble upon Bravelets. I ordered my first Bravelet as a gift and couldn't wait to order one for myself. I recently ordered my RA Research Bravelet and can't wait to receive it! I know I will be able to look down, each and everyday, and remind myself to be brave. Never lose hope.

Keep smiling xoxo Mal
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