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Imagine being able to have the power to feel things three times as much as the average person. Envision being able to feel the warmth of your blanket or the cold fringed air of a winter’s morning, three times as much. Being able to have three times as much energy from that cup of coffee or bottle of monster energy drink. Being able to feel the embrace of a hug or a squeeze of your hand, three times as much. Now picture having hideous looking marks all over your body showcasing your power to feel things three times as much. Marks that come in shades of pink and red, or even purple. Marks that changed colors, weather you meant it to happen or not. That power doesn’t sound so cool anymore does it? This is what it’s like for a person living with Reflex Sympathetic Dystrophy Syndrome. That’s what it’s like for me.

What is Reflex Sympathetic Dystrophy Syndrome (RSDS) you ask? RSDS is a neurological disorder that affects the body’s nervous system. With RSDS, the nerves are damaged and since you don’t even have to see the damage in the nerves for it to be there, it is harder for doctors to diagnose. The damage to the nerves can result in problems with controlling the blood circulation and sweat glands, or even simple body functions like moving an arm or leg. Many times RSDS is a result of an injury, but in my case I was just born with it. It took about four years for me to be diagnosed; this consisted of several doctor visits, two MRIs, one EEG, a CAT scan, and a sonogram on my heart, lungs, and nerves in my legs. I was thirteen at the time, and after all of these tests and doctor visits, I still had the majority of doctors telling me that my symptoms didn’t match up and that it was all in my head. Keep in mind that my leg was still a deep shade of purple. I began to start to wonder who was really the crazy one, the doctors or me?

Now it wasn’t always that way. When I was a kid I did have the discoloration and the marks on my skin, but it wasn’t something that was considered a problem. My parents did go see doctors to see if they could diagnose this strange occurrence but every answer was the same; “that’s just the way she is”. So that’s what I thought, that’s just the way I am. But as I got older the “that’s just the way I am” bid wasn’t cutting it. Around fifth grade I began to experience cold sensations in my right leg and arm, and when I was cold my marks would turn a dark shade of red or even purple. Though my arm and leg might have not felt cold on the outside I felt terribly cold on the inside. My finger tips would get so cold and numb I started having problems just writing down my assignments in school. Some of my peers started to make fun of my sudden change in pigment, and some even tried to tell me I was a liar, and that I just wanted attention. Some of my teachers even had a hard time believing me. If my leg and hand are purple, I’m pretty sure I’m not making something up.

There is not a day that I have woken up without pain. Every day I wake up sore, as if I spent my night continuously walking instead of sleeping. You’d think it would just become routine, not quite. The pain I feel is inconsistent. One time at one of my volleyball games, I tried to go for the ball that just barely went over the net. The next thing I knew, I was on the floor experiencing sharp shooting pain, pain so relentless that I couldn’t even concentrate, it took my coach and three other players just to get me off the court. The pain was so intense I bit my tongue and it began to bleed. When the pain started I tried to remain calm, if I hadn’t it would only get worse. The intensity continued to spread to the point where I felt the pain in my head. The best way I can describe it is as if you were to get hit by a baseball bat and then having someone pull the hair off your scalp. All the while I had my teammates, parents, and others watching me as I tried to remain calm while my pain took effect on my body, you can imagine how humiliated I was. The severe pain only lasted about ten minutes, though in my mind it felt like an eternity. Afterwards, I felt completely exhausted, numb, and embarrassed. Those few minutes of severe pain was more exhausting then that entire volleyball game, and I am sad to say that night was my last game. What makes me angry to this day is that it wasn’t anything serious; I just fell on the court going for a ball. Anyone else would have been able to get right back up and get back in the game. Not I, with my RSDS, the impact of hitting the court was three times as painful.
At that point in my life I was devastated. Not only did RSDS affect the way I stayed active, but it began to affect my wardrobe, the way I walked, and my eating habits. Due to the swelling, I had to wear a bigger size of jeans or sweat pants. When fall came around, I had to start wearing thermals underneath my jeans just to keep my leg warm enough. I also began to notice that even just a little amount of sugar would set my nerves on fire, causing more pain and numbness. Since I was in so much pain I began to limp and cramp up. After school every day, my days consisted of doing homework, doing stretches and then taking extremely hot baths just to relieve the numbness in my leg. It was as if I was a teenage girl trapped in an elderly woman’s body.

The day that I was diagnosed is a day I’ll never forget. After several doctor visits my family and I finally found a doctor who seemed determined to help me. Within only an hour he was able to determine what I had, and he began to research it right away. I remember feeling a combination of emotions, mostly just relieved that I finally knew what was going on. Within the four years of trying to be diagnosed I recall many doctors saying “I’m not sure what’s wrong with you.” I would like to point out that there is nothing wrong with me. I have a condition, and yes I’ve had to adjust, but just because I have a condition does not mean there is something wrong with me. Other people though, didn’t seem to agree. I’ve had to put up with teasing and bullying. At times people would call me a cripple and a liar, and ask why I even tried to do sports or participate in gym class. I was also teased for my discoloration in my right arm and leg. Though I tried to cover up my leg and arm as much as I could, I was still often stared and laughed at. There has been some hard times, and there have been times where I’ve just broken down and said to myself “Why me?”
It’s been four years since I’ve been diagnosed, and since then I’ve been able to learn how to cope with my condition, which has lead to less pain, less swelling, and being able to participate in some physical activities. The bullying has died down quite a bit as well. Thanks to the love and support of my family and friends and the help of my doctor, I’ve been able to do much more than what I thought when I was first diagnosed. I have a TENS unit (Transcutaneous Electrical Nerve Stimulation) now which sends electrical stimuli to my nerves to help cope with my pain and to prevent it from occurring as frequently. I also have not had to take any prescribed medication in two years. With the progress I’ve been making, my doctor predicts that I will go into remission soon, which means a short or permanent amount of time without any symptoms.
To this day RSDS is still a mystery to the medical world, as well as its victims, but I like to think that everything happens for a reason. There is a reason why I have this, and there is a reason why I’ve had to go through what I have. There isn’t a day that goes by that I wish I didn’t have RSDS, but I can honestly say that it’s made me a stronger person on the inside and taught me patience, perseverance, and a better understanding and respect of what some people have to undergo. Most of all, I like to keep in mind that my situation could be much worse, so I am very grateful that it is not. I believe that God only gives us what we can handle, and those who have had to go through so much pain and suffering are considered the strongest ones among us. As the popular saying goes, “If God brings me to it, He will get me through it.”





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