Do-do-do-do ~ Do-do-do-doAlex's World!
Elmo aside, here's what you might like to know
Well, I'm 13 years old as of June, and am kickin' disease's butt big time! I have very few friends my own age because, as I'm told, I am "an old soul" and just have a hard time connecting to people my own age.
"Oh, did you hear so-and-so broke up with so-and-so?"
"Wow! No! Did you hear 1 in 125 kids are born with a congenital heart defect?" LOL
I have a disease called dermatomyositis. It is an auto-immune disease in the lupus/scleroderma/rheumatoid arthritis family and primarily affects my muscles, skin and joints. I've had it probably my entire life, but it got serious when about three years ago, my immune system starts fighting something...we never pin-pointed exactly what it was, but it was probably something like an infection or virus, and "forgot" how to stop. It just kept on fighting until it was killing itself along with attacking and inflaming whatever got in it's way, my muscles, skin, joints and the like.
Some cases can be very mild. Others can be relentless and extremely debilitating. You guessed it, my case is the second. It's taken 3 years of treatments, and nearly having to go across the country for experimental treatments. It was actually the day we went in for the details of what day we were leaving and the like that we found out that my disease had spontaneously gone into remission.
It was a miracle, yet I found myself lost, confused and scared. What did they mean? I was still in a wheelchair! I was still hurting! I couldn't even sleep at night because of the pain! How could it be GONE??? My doctor never took the time to try to explain anything to me. All I knew was that I felt thrown away like a piece of trash (for good reason...I omitted a section of this paragraph due to the fact it just wouldn't be right to post).
It took me a long time and a lot of talks before I understood anything about what had happened. My mom didn't know that I didn't understand. After all, this is the kid who can name almost every of the 100+ kids she keeps up with, the diseases and syndromes they have, AND what they are...why wouldn't I understand? It turns out that that was about the only thing I didn't understand in the medical world.
Finally I understood. It's sort of like asthma. Even when it's not "acting up", it's still there. You still have many of the symptoms, you still have to take your medications, and you still have to be cautious around your triggers. Just like I still experience symptoms, still take many medications, and still have to be super-careful. But unlike asthma, scientifically speaking (I know God can do anything!), I will never outgrow dermatomyositis, and odds are, I will "flare" more in the future. For all I know, it could be starting now, or tomorrow, next week, or next month, next year, or next decade.
There is no way to know, but I was granted the miracle to live, and again when I was an infant, again time and time again as a toddler, and now from this monster called Dermatomyositis. I'm not going to take a moment for granted. God has granted me life for the time being, and He did it for a reason. I have vowed to help people, and make a difference; to make a mark on this world while I can, no matter how long that may be.
Children shouldn't have to suffer, and they shouldn't have to hurt. The most traumatic thing they should have to go through is breaking their arm while playing. No child should have to take chemo, or ask why mommy who says they love them so much makes them put on vests to shake them. No child should have to be fed through tubes and get shots constantly. No child should have to die at just a few days old. No child should be beaten, no child should be neglected, physically or emotionally. Period. And I’m going to be a part of stopping it.
"Oh, did you hear so-and-so broke up with so-and-so?"
"Wow! No! Did you hear 1 in 125 kids are born with a congenital heart defect?" LOL
I have a disease called dermatomyositis. It is an auto-immune disease in the lupus/scleroderma/rheumatoid arthritis family and primarily affects my muscles, skin and joints. I've had it probably my entire life, but it got serious when about three years ago, my immune system starts fighting something...we never pin-pointed exactly what it was, but it was probably something like an infection or virus, and "forgot" how to stop. It just kept on fighting until it was killing itself along with attacking and inflaming whatever got in it's way, my muscles, skin, joints and the like.
Some cases can be very mild. Others can be relentless and extremely debilitating. You guessed it, my case is the second. It's taken 3 years of treatments, and nearly having to go across the country for experimental treatments. It was actually the day we went in for the details of what day we were leaving and the like that we found out that my disease had spontaneously gone into remission.
It was a miracle, yet I found myself lost, confused and scared. What did they mean? I was still in a wheelchair! I was still hurting! I couldn't even sleep at night because of the pain! How could it be GONE??? My doctor never took the time to try to explain anything to me. All I knew was that I felt thrown away like a piece of trash (for good reason...I omitted a section of this paragraph due to the fact it just wouldn't be right to post).
It took me a long time and a lot of talks before I understood anything about what had happened. My mom didn't know that I didn't understand. After all, this is the kid who can name almost every of the 100+ kids she keeps up with, the diseases and syndromes they have, AND what they are...why wouldn't I understand? It turns out that that was about the only thing I didn't understand in the medical world.
Finally I understood. It's sort of like asthma. Even when it's not "acting up", it's still there. You still have many of the symptoms, you still have to take your medications, and you still have to be cautious around your triggers. Just like I still experience symptoms, still take many medications, and still have to be super-careful. But unlike asthma, scientifically speaking (I know God can do anything!), I will never outgrow dermatomyositis, and odds are, I will "flare" more in the future. For all I know, it could be starting now, or tomorrow, next week, or next month, next year, or next decade.
There is no way to know, but I was granted the miracle to live, and again when I was an infant, again time and time again as a toddler, and now from this monster called Dermatomyositis. I'm not going to take a moment for granted. God has granted me life for the time being, and He did it for a reason. I have vowed to help people, and make a difference; to make a mark on this world while I can, no matter how long that may be.
Children shouldn't have to suffer, and they shouldn't have to hurt. The most traumatic thing they should have to go through is breaking their arm while playing. No child should have to take chemo, or ask why mommy who says they love them so much makes them put on vests to shake them. No child should have to be fed through tubes and get shots constantly. No child should have to die at just a few days old. No child should be beaten, no child should be neglected, physically or emotionally. Period. And I’m going to be a part of stopping it.
Butterfly's and Rainbows
Love Through Action
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