2016 Year of the Patient: Jennie Ngo
Jennie Ngo - Part 1
I was diagnosed with lupus in 5th grade. I was walking home until I couldn’t walk anymore. My parents took me to the hospital that night. I was a healthy kid. I was involved in so many sports: cheerleading, soccer, swimming, and dance. Sports were my life. After countless doctors visits and trips to the ER, I was diagnosed with lupus. I was getting fed all this information at such a young age, but honestly I didn’t care. I only cared about whether I could continue my sports. They told me it would be best for me to stop my activities for at least a year until I was in better condition. After that, if I was feeling better, I could continue. The worst part was, they told me there wasn’t a cure. I wasn’t really sure how to handle it. I continued to stay strong because I knew I had too. My parents are both immigrants from Vietnam. They tried to grasp the information along with me, but I knew it was ultimately up to me to take care of myself. Being diagnosed so young made me grow up quicker than most of my peers. I had to learn how to take care of myself while growing up. I tried to be a ‘normal kid’ but it was difficult. I gained weight due to medication and was advised to stay inside during recess because I may get a flare due to the sun. It was difficult, but I adjusted. Days past, then months passed, and everything seemed easier. Lupus was now just apart of my life, not a disease that held me back.
Even though I understand my lupus and I know how to manage it, I still struggle every day. Some days are harder than others. During my junior year of high school, I got a bad flare during first semester. I began to get behind and struggled to accept the fact I was putting so much stress on myself. I ignored it until I no longer could. I would wake up in the middle of the night throwing up, my joints hurt constantly, and I felt like I had the flu but 1,000 times worse. I realized I had pushed myself to my limits. I learned I needed to take care of myself. I focused so much on making everyone else happy with school, work, and activities that I wasn’t taking care of myself. Junior year I learned an important lesson, it’s not selfish to put yourself first. Take care of yourself first and then you will be able to help others. It was always hard to me to ask for help and accept help because I wanted to prove I was strong enough to do everything on my own. But I realized no one had those expectations for me, except myself. I finally decided to accept some accommodations in high school. My advisor helped me through a lot of difficult problems I didn’t want to face alone. While in high school, it seemed like an eternity. But looking back, it was all a flash. Next thing I knew, I was a senior. I am forever grateful for the wonderful people who have helped me through any of my difficult times. I am truly blessed to have such amazing people in my life.
Before my senior year of high school I needed to start getting infusions because of my bad flare during my junior year. My body had taken so much stress and pressure. I got scheduled to have my infusions at Mercy Arthritis and Osteoporosis Center. I wasn’t the typical patient being only 17 years old, but nonetheless all the doctors and nurses were very kind. I was nervous but I knew I had to be strong. My infusions lasted for about 4-6 hours, so I made it into a positive. I decided to catch up on my Netflix (I am a teenager after all). My dad was also kind enough to bring me food to my infusions, so that made things go by a lot quicker. The nurses were so kind and easy to talk too, which made my times there a lot easier. Luckily, my infusions were done after about a month. With all my health complications, I’d made sure I’d have a good senior year.
During senior year I got involved with two amazing organizations. The first organization was JUMP Youth Mentoring and the second was The Lupus Foundation of America – Iowa Chapter. JUMP helped me show my love of helping children and LFA was something close to my heart. Both helped me grow my love of volunteering. Helping people is something I know I’ve always wanted to do. Seeing the smiles on someone’s face is probably the most rewarding thing to me.
Eventually senior year was over. Next thing I knew I was graduating. I was planning my graduation party, taking senior pictures, and I was so proud of everything I had accomplished. Even with my lupus, I knew I couldn’t let it hinder me. I had come a long way and my lupus seemed to just be another part of my life. I think the best part about my senior year was joining LFA-Iowa. LFA-Iowa showed me the amount of people, in Des Moines alone, dealing with the same thing as me. I never really talked much about my lupus before. I know that talking helps, but it’s still hard sometimes. Hopefully sharing my story helps someone else struggling with lupus and/or spread awareness.
My lupus has been at a good point so far. I recently got two infusions just for a precautious measure. Luckily, I haven’t had any flares lately, which is a really good sign for me. I have the most amazing doctors helping me at Pediatrics Rheumatology here at the University of Iowa Clinics. My lupus seems to be under control, for the most part. Sometimes I wish I was a ‘normal kid’, sometimes I wish I didn’t have to deal with a disease or take medication everyday, but I never let that hold me back. I’m young and still figuring things out. I am lucky enough have such a great support system helping me along the way.
I am currently a freshman at the University of Iowa studying business. (Go Hawks!) I had a hard time adjusting at first. I’m naturally really shy, but college has helped me get out of my little bubble. All the experiences have been amazing, but something didn’t click. Adjusting was difficult, but I feel like my lupus had made me ready for the challenge. I decided to join clubs and try to talk to new people. I joined Habitat for Humanity, since I knew I wanted to continue volunteering. Habitat has been a great experience, it’s hard work but rewarding to know I am helping families in need. I am still trying out a couple different clubs. I recently went to my very first caucus and it was an amazing experience. We had 600+ students in my caucus building alone. College has been amazing because there countless opportunities being thrown at you, you just have to be willing to take them. I don’t know when it finally happened, but I now count Iowa City as my home. It feels right being here and I wouldn’t trade it for the world. I’ve met such amazing friends, which I hope I keep for the rest of my life. I have an apartment signed for next year and I couldn’t be more excited. I’m still young and my story is still being written and I can’t wait to see what the future holds for me.
My goal for lupus is to eventually find a cure. But for the time being, just spread awareness. I never even heard or knew about lupus before I was diagnosed. I also don’t ever want people to look at me and only see my lupus. My lupus does not define me. I am a stubborn, determined, and strong willed lady and I wont let my lupus stop me from anything I want. My lupus has taught me so much. Not everyday is great with lupus. Some day I can barely get out of bed. Even though there are bad days, sometimes I see my lupus as a blessing in disguise. Its taught me valuable lessons. My lupus has showed me how much of a strong person I am. I’ve been through a lot and although I have a great support system, I faced many things alone. I enjoyed sharing my story, although it’s still being written. For me, the ups and downs make life worth living. I also want to thank everyone from the bottom of my heart! Everyone has been so kind and your words are so uplifting. I am so happy to share my story and hope it impacts everyone in one way or another.