Hidden Sunflower

When I was a young girl, a sweet boy gave me a sunflower after I went to my chorus concert and it became this flower that I fell in love with because it was something that not many people received as gifts. This gift came to me a year after I found out that I had my own hidden disease. I was sixteen years old when I met this boy and found out that I had SLE Lupus. I struggled with it for so many reasons, and it scared me. I remember thinking to myself when he gave me this sunflower that night after my chorus concert in December that I was a hidden sunflower amongst the flowers.

This story though is not an easy one to tell and I don't think a lot of people have easy stories to tell. I had just turned 16 years old and I was a Sophmore in High School. I was running around on the track and field for Gym that semester and I was honestly just trying to manage with the heat of Florida and try to get through my day. I would wear my shorts to school especially when it was summer because it was hard to walk around in the heat. Though soon it became something I honestly learned to cope with.

One day when I was getting picked up from school my grandma, Mimi, noticed that I had this rash on my legs. She would take me home to my house and we told my parents what was going on. None of us knew what to make of it, so we watched it very closely. It would take a good almost 8 hours of not being in the heat to make it go away. Then we watched it the next day it came back with the same residual effect. So we called the doctors and made an appointment. Who knew that this appointment and the bloodwork that the doctor was going order for me would change the rest of my life.

We went to the appointment after I got out of school, being that I was in high school I got out early so my mom and I went to the doctors. He looked at my legs and said that this could be fifths disease, it is not contagious, however I would like to get blood work just to make sure that there is nothing else wrong. The moment he said those words my life would change. We got my bloodwork done and waited for the phone call. It came and I picked it up, and I looked at my mom. That was the day that my doctor wanted me to go see a rheumatologist due to increase levels in my Anabolic Acids. I didn't know what was going on and I broke down crying. I was scared and confused. My sister who worked in the medical field was able to provide me with a rheumatologist who I have been seeing for 11 years now.

The day I went to my first appointment, my parents couldn't be there for me because they were working. My sister was the one that had to take me. I was lucky that she lived near me so she could, my other sister lives in New York and that would have been a long way to get here just to take me there and then get back home. I was nervous, I was one of the youngest patients in the office and I honestly had no idea what to expect. I didn't even know what a rheumatologist was. Though I found out that day that my life was going to be changing forever.

First I was told that my Anabolic Acids, or ANA, was high and that I was going to be put on different vitamins to help with lowering these. Second I was told that I had a butterfly rash on my cheeks. I honestly had no idea that the redness in my cheeks that to me was always there never went away was going to be given such a distinct trademark name such as a butterfly rash. Third I was told that the rash on my legs was a normal rash that will be all over my body called the Livedo Reticularis Rash, it is a scaly rash that hives up on my skin with white and red and causes discoloration. Fourth I found out that I had Raynaud's, which causes closed blood circulation to my hands and my feet. The fifth thing I learned was that I am photosensitive to the heat and the cold. These five things changed my life forever, I was officially being watched and taking vitamins for SLE Lupus. This shattered my world and it caused me to be in a depression for years.

I was to cut out a lot of things in my life that I was used to doing. I couldn't be outside for too long and I had to wear jeans more. In Florida wear jeans in the dead of summer is hard because it is so hot. I will wear shorts, however, it is a rarity. I walked around like I thought I was the plague and had no idea what to do or say to anyone. I just tried to adjust and to live this new life. My own family had to adjust there life to be around me. I had to start trying to be healthier and not to drink so much soda. I couldn't go tan as much as I used to and I needed to make sure I took those vitamins every day.

I did my own research and it scared me. I cried every day for the longest time I let myself get worse. When I finally found a will to fight I did and I pushed myself to get better and I tried to not let it consume me. Though it did every second of every day. It scared me. I went to the doctors at least twice a year and as I couldn't take the vitamins and my bloodwork kept coming back decent it just became routine.

It wasn't until four years after high school that I had my first real flare-up. I didn't know what real pain felt like till you feel your body lits up like it is on fire. Though it was one of the hardest days of my life. I never knew that I would be able to manage through such pain and have no idea what is going on. When I saw my doctors after that, everything change. That was the day that I looked back on getting those sunflowers and I remember how much joy they brought into my life of sadness and despair. That those flowers changed how I felt about everything. Not many people understand what it is like to feel hidden, yet those that do we stick together.