Tuesday, March 4, 2014

At about the age of 4 my face began to change slowly. In which the doctors soon diagnosed me with a condition called Scleroderma. (Scleroderma is a disease that involves the buildup of scar-like tissue in the skin. It also damages the cells the line the walls of the small arteries) The left side of my face started to change as well as the person inside of me. Though I was young at the time, I remember it all. The first few years were nothing but MRI's and numerous tests. The doctors wanted to make sure that what I had wasn't spreading throughout my body. The first road I went down was treatment. That lasted about 9 weeks in which I would go to the hospital every Saturday for a few hours and get hooked up to an IV. It wasn't easy being that young and having to do that once a week but I did it, and though it was extremely hard at times to understand why this was happening to me the people by my side and the people I met along the way are the reason I kept on keepin' on. I vividly remember my nurse Sue Ellen. She would always greet me with the biggest smile and have my room all set up with a video game and a side of bagel bites. She made my Saturdays the best they could be. After treatment had stopped I tried my best to keep in contact with her but eventually that faded. After getting treated for 9 weeks they continued with even more tests and eventually sent me to San Francisco to see a plastic surgeon. At the time the surgeon wanted to wait and make sure that my condition had stopped spreading before he did anything. As if that wasn't enough, the doctors wanted to put me on medication. I remember going to see my doctor and him giving me a giant purple pill that I was instructed to take once a week. Now, if there is one thing in this world that I absolutely hate with a burning passion it's taking pills. Maybe it's because my throat is a little different then yours and always gets stuck or the taste they leave in my mouth while it sits on my tongue. Clearly, I was miserable. The first day I was crying hysterically and so we went back to get another option. We then tried six little pills. (By "we" I mean my mom and I) - she never left my side. Taking six little pills just made the process about 2 hours of me crying while trying to take them, it was pure torture. So then again, we went back and asked for an alternative. My doctor suggested a liquid form or better known as "tooti fruitti" .. to sum that up real quick, I would lay on the floor crying and shaking and refusing to take it. My mom would sit with me and would always tell me "if i could take it for you i would, but i can't.. so just get it over with" and once I did I would rush to the bathroom with the thought of puking mu brains out. (TMI) Long story short, I'd rather cut my leg off then drink that medicine. So one last time.. we went back to see my doctor. I had one last option.. I would take one small pill and then an hour later I would go to Urgent Care and get a shot in my arm. After the shot, I would get nauseous and the next day I would still be nauseous. That lasted for 3 years.. every Tuesday. The day my shots had stopped I went into the doctors office and my nurses and doctor were waiting with a cake and photo album full of all the stickers I got after every shot. I'm pretty sure I cried.. tears of joy of course! The last final news I got was just before 8th grade was coming to an end where I got offered plastic surgery. The procedure would involve taking fat from my back and putting it into my face but it would've involved multiple surgeries. I remember when the doctor was explaining it to me, my mom, and grandma I had such a weird feeling. I was relieved that I finally had a solution but was also angry for some reason. I really can't figure out why I felt that way. But I said no. I did not want to change my appearance for anybody because when I look in the mirror I love the way I look. School was never hard for me.. surprisingly, people never stared because the majority of them were my friends. In fact, I met my best friend on the playground one day (4th grade) when I asked her to be my best friend and she said no.. so I kept following her and copying her and she had told her friend to just mouth everything because I can't move my lips therefore I couldn't copy them anymore.. and we became best friends till this day. (Love you Meagen) I have 3 brothers and 2 sisters all older then me… so EVERYBODY knew if they'd say one wrong thing to me or about me I'd have back up. I was raised in a big family with big hearts where I never once felt sorry for myself. I have two legs, I can see, walk, run, read, write and everything else. I am truly blessed. Through this long journey that I still continue on each and everyday I would have never been able to smile after every day if it wasn't for my mom. I can't imagine what it's like to have to always be the stronger person and wipe all of my tears that i've cried.. and continue to tell me to be strong. Of course I've had my fair share of "why me" and i've went through periods of depression but if i'm not fighting then who is? We all have problems and things we don't like but you can either sit there and feel sorry for yourself or you can get up and smile and learn to be happy. I'll never be perfect, but at least now i'm brave.

1 comment:

  1. Hello, I have the same condition as you. I admire how strong you are! By the way I was exactly the same about medication and still till this day taking pills reminds me of the ones I took when I was younger and makes me feel sick!

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