This is My Story

When I was sixteen and learned what my disease truly entails, I became convinced that I would die by the time I was thirty. Up until that point, I hadn't really understood what it was, though the doctor had once given my sister and I a booklet explaining the disease, and what causes the pain. I began doing research about it as a result of having persistent wrist pain while playing the clarinet. My music teacher took it upon himself to call my parents and tell them about the pain I was experiencing because he wanted me to be well. I was taught to be independent, and didn't want my parents more involved with anything than they had to be, so him calling my parents was a big thing for me. He got in touch with my mom, and told her about my wrist pain, and she revealed my big, shameful secret. I had Sickle Cell Anemia, and that's what was causing all my problems.

Dealing with SCA all my life and being excluded from my gym classes as a decision by my mom had made me feel like an outcast. A guilty outcast who was different and had something to be ashamed of because I had a disease that I didn't understand that kept me from participating, and sometimes made me have pain. (I was also lactose intolerant which sometimes made me sick, but I didn't figure that out till I was fourteen. It was a difficult journey.) Because of that shame and guilt, I always felt that I had to hide it, so having my mother tell one of my favorite teachers my secret was a HUGE deal for me. Suddenly, he knew that something was wrong with me, and he as well as my mom and doctor were now advising me to take my Folic Acid regularly. At the time, I wouldn't, because when I would remember to take it was always at night, and whenever I take vitamins at night I have trouble sleeping. I always preferred having a night's sleep to taking the vitamin. 

My mom was convinced that if I just took my Folic Acid, I would be fine, and that's what she told my music teacher. I wasn't so convinced, and with the research that I began doing online, finding out what my disease really entailed made me pretty depressed. I remember sitting in my purple bathrobe one night, holding my clarinet after a practice session and a bout with wrist pain, and I'm pretty sure I burst into tears that I was going to die young because of my disease. With the ideas I had in my head by that time, all I wanted was to be married in my early twenties so that I could give my best years to my husband and my kids. I also developed a pretty morbid sense of mortality that I didn't stop talking about until my guidance counselor died of meningitis when she was twenty-eight.

Throughout the years, my sense of guilt about my disease did not diminish. As I got older and my symptoms grew worse, and I had to rely on my parents and sister(s) to take care of me when I was sick, it grew. Though my father almost died from it when he was in his twenties, he and my mother seemed to believe that I would be doing better if I only went to church more and had greater faith. Some of the things they would say did nothing to boost my morale, so I was really grateful to have my sister(s), who did take care of me without judgment and understood me. 

I must say that when I started taking my Folic Acid regularly, I did start to feel a bit better. But high school and college were incredibly demanding in their schedules, college less so than high school, and with their work loads, and with my small understanding of my disease and lack of information about healthy, natural alternatives, I know I abused painkillers by taking too many at once, and I may have done lasting damage to my body. I'm sharing my story because I don't want this to be yours or your child's. 

SCA can be devastating with the way Western medicine treats it. It doesn't offer up much besides heavy painkillers, and medicines with terrible side effects. I am sharing my story so that more people will know what they can do for themselves to get to a healthier place. It may be expensive to order extra supplements to take daily, it may be expensive to buy more vegetables to eat, but it is a lot more expensive to pay those hospital bills and to have to miss days or even months of school or work and to deal with all the pain. I am not in a picture perfect state of health, but I am in a much better place than I was in November, when all I wanted to do was kill myself, or over the summer, when the suicidal thoughts began crossing my mind in earnest. Please share this blog, please share my story, because it can get better. This is my story and it is real, and there are so many more out there who are doing better on natural alternative. Sickle Cell - Natural Healings is just one example. Maybe one day Western medicine will invent a cure that doesn't endanger patients lives as they go through it. For now, this is what I have to offer. I hope this helps.