Diary of … a lupus warrior

Jordan Cook is a senior business administration major. Her interests include writing poems, songs and stories. She also loves to weight lift, play sports and learn about different cultures. With her story, she hopes others learn that everything is possible if you can find motivation, determination, a will to succeed, courage and positivity.

Almost six years ago on Sept. 28, 2008, at the age of 16, my whole life changed. I was diagnosed with systemic lupus erythematosus (SLE), often referred to as lupus, which doesn’t have a cure yet. Lupus is a chronic disease, meaning that I will always have it. My body sees itself as a foreign invader so it attacks itself, so all the good cells are dying along with the bad cells.

I experience fatigue and arthritis, and I am slightly allergic to the sun. Between the ups and downs faced in life, stress, hormones, the sun, and viruses that often float around, it is important that I take care of myself. Lupus can also affect any of the organs or multiple organs often leaving someone with inflammation and disease within an organ. Lupus can be treated, and it is usually treated with corticosteroids and other medications to help get rid of the inflammation that builds up in the joints. Depending on how severe the disease is, there are also many other treatments that could be used if necessary.

Before the diagnosis, everything in my life was very stressful. I played sports, went to high school, dealt with my social and family life, and like any other teen, I had my own personal battles. The first time I really noticed changes in my body was in January 2008. I was playing softball for Villages Charter High School. Softball used to be effortless for me, and it started to become a chore because I was feeling very fatigued. I shrugged it off and continued because I thought that my fatigue was from the everyday wear and tear of being an athlete.

As time passed by, I was selected to play for one of the top known travel softball teams called Team Florida. This was a huge moment in my life because I would be playing for an elite team with girls two to three years older than me. I longed to go to the next level every chance that I could get, and making this team meant that I would get the exposure I needed to possibly get noticed by a top NCAA Division 1 school. One of my dreams as a little girl was to attend the University of California, Los Angeles competing in softball as the starting catcher. I thought to myself, “Here I am. This is my chance.”

I practiced and played tournaments in and out of state with Team Florida. Alabama was amazing, but I got a nosebleed. While I was in Texas, the fatigue doubled. Not to mention that the sun was killing me. These were still just little things that I shrugged off. It wasn’t until I got back from Colorado that I really noticed some major changes. The fatigue got really bad and I had also come home with a really painful sunburn on my face. My mom took me to the doctor to get my sunburn looked at. They diagnosed me with sunscreen dermatosus, and I received a rash cream to apply to my face a couple times a day. But even as I flew into California, the sunburn on my face did not get better at all. I was struggling to even get through an inning of softball, much less one game.

Symptoms started appearing abruptly. When I would try to use my wrists to lift myself up off the floor, they would hurt. They were swollen, along with my ankles. I just brushed it off once again, but it wasn’t until late August that I realized there was something seriously wrong. I could not get out of bed for a month; my body was shutting down. I remember I Iifted my head off my pillow and saw all of my hair lying there. I spit up blood because I had sores in my mouth. I had the butterfly rash on my face, and I had sores on my arms and legs. I was in so much agony from head to toe. My mother had to spoon feed me.

But not once was I worried about my health. I was only concerned about not being able to play sports. I worried about not being able to do my schoolwork and going to school. I worried if my friends would still be my friends when I returned to school and if they would be able to be my friends after they realized everything about me had just changed.

I bounced from doctor to doctor until I was able to see a doctor who referred me to a pediatric rheumatologist. She ran breathing tests, MRIs, a kidney biopsy, urine cultures and blood tests. I was also treated with aggressive medications such as prednisone, enapril, plaquinel, and iron.

On Sept. 28 of that year, I was officially diagnosed with lupus. A few days later, I was also told that because of my lupus I also have kidney disease and would also have to have chemo treatments for six months. When I went to my first chemotherapy treatment, the temperature so hot, but the day I left the hospital, it was very cold; the seasons had started to change and I missed it. I realized how valuable life was. I realized that there is more to life than what we see, and I realized that life could be gone so fast.

When I returned to school, I struggled a lot. I was told that I was never going to be able to play sports again, but I did not let those words bother me. Instead of playing, I began weight lifting. I built all my strength back up, and I was able to play softball that same school year. I achieved that. No one could take that away from me.

I lost out on my chance to get a scholarship to the top schools I had been trying to go to. I graduated and set goals for softball, making good grades. To me, that was something to be proud of. I had to start all over from scratch, but I made it. I tried out for junior colleges and I ended up receiving a full scholarship to Seminole State College of Florida. There I was the starting catcher for two years. Out of those two years I had a fielding percentage of 900 percent or more each year. I hit a total of 23 homeruns, and I kept a 3.2 GPA. I grew. I got stronger.  I never ever let my disease get the best of me.

Today, I can proudly say that I have made it through so much in my lifetime. My disease is in remission. However, I still have flare ups. I deal with fatigue, and because my immune system is very weak. I get sick easily. Due to my traumatic experience with lupus and medications, I often think about my past and sometimes become very depressed. I also am very forgetful. I have really, really good days and really, really bad days.

I have learned how to deal with everything that I have been through, and there is no doubt in my mind that there isn’t anything that I couldn’t do in this world. I just tell people to never give up and always have faith. My faith has gotten me through a lot of what I have been through, not to mention, my song writing. I have big dreams that I know I will achieve one day. I always try to stay positive about the situations that I am faced with, because if I am not, I could easily get sick from the stress and lose focus of the goals I have for myself. There is not one day that passes that I just take time to cherish the moments that make me laugh, smile, feel loved or consume me with happiness.

Life is very short and very fragile. It could be taken from us within the blink of an eye. Life is a blessing that some do not even get to enjoy. So my advice is don’t ever take anything for granted, live life to the fullest, stay positive, stay strong and always seek happiness. God bless.

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