Doctor Martin Luther King, Jr. said If you can’t fly, then run, if you can’t run, then walk, if you can’t walk, then crawl, but whatever you do you have to keep moving forwards.
I am 19 and have had Systematic JRA (Juvenile Rheumatoid Arthritis) since I was six months old. I am involved with the arthritis foundation, hospitals, and volunteering at school. My life has been a series of ups and downs. My arthritis at most times have been crippling. From needing to be carried around when I was 5 by my mom, teachers, and friends or being pushed in a wheelchair/Stroller. When I was in 3rd I got a scooter where I had more freedom. But no freedom from pain. I have been taking medicine for my JA before I can even remember. I started biologics at 18 months such as methotrexate and Remicade, but nothing has worked.
Right now I am on a 5 prescriptions a day. I have been on IVIG(IntraVenous ImmunoGlobulin) For about 6 years per once a month, this helps keep my arthritis under control, but doesn’t keep the pain away. Of course like anyone with an auto immune disease, I’ve been on steroids all my life which had also given me troubles. I have 3 brothers and they beg me to go outside and play with them, but most of the time I have too tell them I’m too sick or too sore to go play with them, when I see their faces when I tell them it breaks my heart.
When I was 10 years old I went into septic shock I was in a coma for 2 months and rehab another 2 months. Septic shock caused me too lose my fingertips on my left hand and my toes. The summer I was going into 6th grade I went to camp MASH where I met people just like me they became my best friends, I have been going to camp MASH annually for 6 years. When I was 13 I had my left hip replaced which caused me to have unbearable pain for 6 months – a year. I did not have rehabilitations for my hip replacement. I had to go to school on a cocktail of pain medications after I had my replacement causing me to swerve into walls with my scooter (that was LOL funny). Let me tell you though, even after all that pain I wouldn’t not have done the replacement because my hip feels so much better and I can do so many things that couldn’t before. Freshman year of high school I had 8 ear infections in a year so I had a Mastoidectomy. The doctors found out the ear infection had ate through my skull I was on bed rest for a year. All of that caused me to fail 2 classes from being gone.
Now, I am an A student. I have a GPA of 3.2 and am looking forward to going to college to become a child life specialist at Edgewood college in Wisconsin. Which I am proud to say I have been accepted into and will be going to in August! My health is better than it used to be. I am walking regularly. I don’t have to use a wheelchair or a scooter at school anymore. I have less infections than I did in the past. Though I can not do normal day activities like a person with out a disability could. I adapt normal day activities to my standards so I can do them. Through all the struggle my family and friends have stuck by my side the entire time. I’m so thankful for my family and friends. If I wouldn’t have had them through my struggles or pushing me to get it done I don’t know where I would be today. I may not have been able to walk, go to school or may not even be alive. I wish for everyone who reads this to have the courage I did. Please do not give up. Have strength to live.