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Jennie's own words from the 2015 Warrior Zone
These were Jennie’s own words for the Warrior Zone at Walk to End Lupus Now - Milwaukee 2015. We lost Jennie on March 10, 2016. She was one of the strongest lupus warriors and women we ever met!
I am a LUPUS WARRIOR of 20 years and this is my story.
My journey with lupus began in December 1994. I was only six years old and I had what the doctor thought was a virus. My temperature was 102 degrees and I felt extremely tired. My parents took me in to see the doctor two days in a row and he just kept saying “it will get better.” On the second evening, my mom thought there was something more going on when she noticed that I was using my left hand to eat dinner, even though I am a righty. The next morning, I woke up in extreme pain, holding my right side, and dragging my right foot. My parents rushed me to the doctor again and this time he sent me directly to Children’s Hospital of Wisconsin. As soon as I arrived at Children’s, the nurses and doctors started doing all kinds of tests. It took about two days before we got the diagnosis of systemic lupus erythematosus, which is unusual since most lupus patients suffer for months or years before they are diagnosed. The rheumatologist told my parents that I had three blood clots on my brain, my liver and spleen were enlarged, and I had a heart murmur from the fluid around my heart. Luckily, I was too young to realize how serious and life threatening my condition was. I barely remember any of it.
I was in the hospital for nearly two weeks as the doctors continued testing and treating me with high doses of IV steroids to help get the lupus under control. I remember being worried that I wouldn’t be home in time for Christmas, but then about a week before, I was sent home.
In January of 1995, I had a kidney biopsy because my blood pressure was very high. The results revealed that the lupus was attacking my kidneys. I was placed on numerous medications, including prednisone and IV Cytoxan for 2½ years. This is a strong immunosuppressive drug that has severe and sometimes lasting side effects. After a long time, my health slowly began to improve and my Cytoxan treatments were decreased, along with the high doses of steroids.
Over the years since my diagnosis, I have been in both remissions and flares and I continue to be monitored closely by my medical team. I visit the rheumatologist every three months. The fluid that was around my heart placed a lot of stress on my heart valves, and because of all of the scaring it caused, I currently have a moderate heart murmur to which I see my cardiologist twice a year. These appointments typically include either the amazing stress test or an echo. Within the past few years, my lungs have been involved and due to scaring in my lungs, I now have breathing issues and see the pulmonologist twice a year. I have had skin involvement with funny rashes here and there. The skin on my face is so sensitive that I wasn’t able to use any sort of sunscreen on it or it would literally burn my face. For all of these issues, I have my dermatologist who has helped control the skin issues and helped me find a sunscreen that works finally! I have had the wonderful development of kidney stones within the past few years also, so for that I have a nephrologist and urologist. I even had to have surgery to have the stones blasted because they were too large and had gotten stuck in the ureter. I recently added a neurologist to my team because I have had some neurological issues which include migraines, double vision, and of course the Lupus fog. It is nice knowing I have a specialized doctor for whatever body system may go wrong, however, the numerous appointments can get old very fast!
Many people don't realize that lupus is more than being tired and having joint pain. It is a life-threatening disease that can attack any organ in the body, as mine truly has. Every person diagnosed with Lupus has different symptoms and different organ involvement. Either way, Lupus is a hidden disease. For me, if you walked past me on the street, unless I was wearing a bright shirt saying I HAVE LUPUS, you would never know. But my lab work, joints, lungs, and heart all say something different. With the help of my medical team over the past 20 years, my Lupus is fairly controlled right now, knock on wood.
Today I am 26 years old and in my lifetime, I have been through a lot and have accomplished many things along the way. Growing up with this cruel disease, I believe, has made me into the person I am today and has helped me find a passion within the medical field. I have a bachelor’s degree in Biology Biomedical Professions with a minor in Chemistry. I am currently working full time as an Analytical chemist at a chemical production and purification company. I am putting my minor to good use, but someday I wish to return to the medical field where I want to work in research to help diagnose and ease the suffering of any patient with a debilitating illness.
I have never let my Lupus hold me back from anything I wanted to do or try in my life, and I don’t plan to ever let it. Who knows what the future will bring to me but whatever it is, I’m going to be ready to fight, because I refuse to let Lupus control my life and I AM LUPUS WARRIOR! I WILL SURVIVE!
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