This is LLLOOOONNNGGGG, but I think it's worth it, so please read on and try not to fall asleep! =P
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. 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...I know about platelets, cancer cells, hemaglobin, blood transfusions, bone marrow transplants, stem cell transplants, chemotherapy, steroids etc etc...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 asthma, and odds 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
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I have been asked to edit some of my poem journals for the arthritis foundation to publish. I was also the Arthritis Foundation's 2007 Jingle Bell Run regional representative, and featured on the news to fund-raise for them. I have been published in "Kid's Get Arthritis, Too", and other kids magazines. My #1 life goal is to prove others wrong and grow up to find my dream man and deliver a baby. Beyond that, I would like to continue running my charities/foundations/fundraisers, adopt as many as 20 special needs children from all over the world, and publish a national best seller in order to fund my dreams and charities. I have been told by many to submit my poems to magazines, books, etc, but when you do that, according to the fine print, you are giving them unlimited rights to your poetry. AHEM??? NO! I just refuse to take the chance. I'll publish them myself before I give away the rights to my work!
Also, if ANYONE for ANY REASON takes any of MY poems, even just to post with credit on another site without my permission, will be in BIG TROUBLE! I am fully prepared to take whatever actions possible! So just don't do it! If you ask me about it, I'll probably say it's okay, but otherwise, FORGET IT!!!
The poems here are not all my poems by far, just the ones I happened to write while on the computer and copied and pasted to allpoetry. Some may seem depressing, but it's cheaper than therapy, right (though I do see a therapist and am proud of it! Everyone could use some, but I can't afford more than I'm getting!)? Believe it or not, I do write "happy poems", it just so happens they tend to come at 2am when I can't write/type them down, or I'm too lazy to copy them to the computer.
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I just turned 13 =) Any pervs out there, don't try to pull any numbers on me...not going to work...you'll just get your sorry @$$ kicked and thrown in jail. Plus, I'm obese from the medications I'm on...my own father doesn't accept me, so there is no way you'd even want anything to do with me if you saw me. Got it?
Those who want to know what meds I take, I'll just tell you now. I take steroids (prednisone, just reached maintenace dose of 5 mg every other day) & methotrexate (a form of chemotherapy, 1cc injected once a week) along with loads of other meds for it.
If you want to know more about me (if you don't qualify as a sorry @$$ like I mentioned above who wants to pull a number on me) or any of my charity work/etc, just ask =)
Victory is from the inside out. It isn't remission, or anything like that. It is how you fight, that you fight, don't give up, don't lose hope, and don't let whatever you're fighting define you that makes you victorious. Join me & be victorious...from the inside out ~My motto...please don't take =) thanksies!
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I am dedicated to:
Jesus Christ
Charity work, helping others (perhaps to much!)
Photography
Art
Learning to walk again
This is dedicated to the following:
~Jesus Christ
~My mom
~Lisa! my 'myspace mom'
~Mia! my 'myspace sis' and precious little warrior!
~Katherine
~Sarah
~Jamie, my "little brother" & precious little warrior!
~Riley Hardison, RIP little buddy...we WILL find a cure for cancer! (Riley's first angel day is coming up soon, so please if you would, say a prayer for his family)
~Boey Byers, Bethy Uganst, Skylar-Jade, Isaac Leiser, Mila Philips, Ella Hope
~All kids who have fought cancer, or had it replaced with wings and a mansion in heaven
~All kids who have fought any sort of disease/syndrome/disability, or who have had it replaced with wings
~Marianne =)
~Emily
~Sara/Karma
~All those who raise awareness
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Other Stuff-
~I often spell "awesome" "awe-some" because the word is used so much that it seems to have lost it's meaning. So by spelling it "awe-some" it's putting emphasis on the word's root(s) of leaving you in awe!
~When I was younger I dreamed of being on the UNM Lobos' womans basketball team, until it hit me that it's very possible I would never play basketball on any kind of team again, none-the-less a college team!
~After that I decided I wanted to adopt 30 kids. (LOL)
~Then I decided I'd settle for ten, no more than 20 over my lifetime.
~I run 3 1/2 charities (long story)
~I think school cliques are just dumb
~I've been accused of being too "nice" and "innocent", which bugs me because I don't claim to be better than anybody else. Just because I'm "different" doesn't mean I judge people with different pasts than myself. Just because I plan on waiting until I'm married to have sex doesn't mean I judge those who didn't do that. Just because I haven't broken the law doesn't mean I judge those who have committed a crime in their past. The past is the past, today is today, so let's make the best of it =)
~I'm a princess--- my Father is the King of Kings!
~At times I deeply struggle with my faith and feel like there's no use in seeking a personal relationship with the Lord, but deep down I know that He'll be there, eagerly waiting for me
~I pretend to be confident but I'm really not. Ever since I can remember I've been made fun of and after a while of it, you start to believe it. (Well, I AM confident in some things, but there are a few things that could be worked on)
~I believe children should address adults with "Ms" "Mrs" "Mr" and "Mam/Sir". It's polite and shows respect...and even if the person doesn't deserve respect, it'll make them respect you more.
~I am a born-again (and again, and again, and again...) Christian. Denomination wise I consider myself Protestant-Evangelical.
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. 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...I know about platelets, cancer cells, hemaglobin, blood transfusions, bone marrow transplants, stem cell transplants, chemotherapy, steroids etc etc...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 asthma, and odds 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
---------------------------------------------------------------------
I have been asked to edit some of my poem journals for the arthritis foundation to publish. I was also the Arthritis Foundation's 2007 Jingle Bell Run regional representative, and featured on the news to fund-raise for them. I have been published in "Kid's Get Arthritis, Too", and other kids magazines. My #1 life goal is to prove others wrong and grow up to find my dream man and deliver a baby. Beyond that, I would like to continue running my charities/foundations/fundraisers, adopt as many as 20 special needs children from all over the world, and publish a national best seller in order to fund my dreams and charities. I have been told by many to submit my poems to magazines, books, etc, but when you do that, according to the fine print, you are giving them unlimited rights to your poetry. AHEM??? NO! I just refuse to take the chance. I'll publish them myself before I give away the rights to my work!
Also, if ANYONE for ANY REASON takes any of MY poems, even just to post with credit on another site without my permission, will be in BIG TROUBLE! I am fully prepared to take whatever actions possible! So just don't do it! If you ask me about it, I'll probably say it's okay, but otherwise, FORGET IT!!!
The poems here are not all my poems by far, just the ones I happened to write while on the computer and copied and pasted to allpoetry. Some may seem depressing, but it's cheaper than therapy, right (though I do see a therapist and am proud of it! Everyone could use some, but I can't afford more than I'm getting!)? Believe it or not, I do write "happy poems", it just so happens they tend to come at 2am when I can't write/type them down, or I'm too lazy to copy them to the computer.
---------------------------------------------------------------------
I just turned 13 =) Any pervs out there, don't try to pull any numbers on me...not going to work...you'll just get your sorry @$$ kicked and thrown in jail. Plus, I'm obese from the medications I'm on...my own father doesn't accept me, so there is no way you'd even want anything to do with me if you saw me. Got it?
Those who want to know what meds I take, I'll just tell you now. I take steroids (prednisone, just reached maintenace dose of 5 mg every other day) & methotrexate (a form of chemotherapy, 1cc injected once a week) along with loads of other meds for it.
If you want to know more about me (if you don't qualify as a sorry @$$ like I mentioned above who wants to pull a number on me) or any of my charity work/etc, just ask =)
Victory is from the inside out. It isn't remission, or anything like that. It is how you fight, that you fight, don't give up, don't lose hope, and don't let whatever you're fighting define you that makes you victorious. Join me & be victorious...from the inside out ~My motto...please don't take =) thanksies!
---------------------------------------------------------------------
I am dedicated to:
Jesus Christ
Charity work, helping others (perhaps to much!)
Photography
Art
Learning to walk again
This is dedicated to the following:
~Jesus Christ
~My mom
~Lisa! my 'myspace mom'
~Mia! my 'myspace sis' and precious little warrior!
~Katherine
~Sarah
~Jamie, my "little brother" & precious little warrior!
~Riley Hardison, RIP little buddy...we WILL find a cure for cancer! (Riley's first angel day is coming up soon, so please if you would, say a prayer for his family)
~Boey Byers, Bethy Uganst, Skylar-Jade, Isaac Leiser, Mila Philips, Ella Hope
~All kids who have fought cancer, or had it replaced with wings and a mansion in heaven
~All kids who have fought any sort of disease/syndrome/disability, or who have had it replaced with wings
~Marianne =)
~Emily
~Sara/Karma
~All those who raise awareness
---------------------------------------------------------------------
Other Stuff-
~I often spell "awesome" "awe-some" because the word is used so much that it seems to have lost it's meaning. So by spelling it "awe-some" it's putting emphasis on the word's root(s) of leaving you in awe!
~When I was younger I dreamed of being on the UNM Lobos' womans basketball team, until it hit me that it's very possible I would never play basketball on any kind of team again, none-the-less a college team!
~After that I decided I wanted to adopt 30 kids. (LOL)
~Then I decided I'd settle for ten, no more than 20 over my lifetime.
~I run 3 1/2 charities (long story)
~I think school cliques are just dumb
~I've been accused of being too "nice" and "innocent", which bugs me because I don't claim to be better than anybody else. Just because I'm "different" doesn't mean I judge people with different pasts than myself. Just because I plan on waiting until I'm married to have sex doesn't mean I judge those who didn't do that. Just because I haven't broken the law doesn't mean I judge those who have committed a crime in their past. The past is the past, today is today, so let's make the best of it =)
~I'm a princess--- my Father is the King of Kings!
~At times I deeply struggle with my faith and feel like there's no use in seeking a personal relationship with the Lord, but deep down I know that He'll be there, eagerly waiting for me
~I pretend to be confident but I'm really not. Ever since I can remember I've been made fun of and after a while of it, you start to believe it. (Well, I AM confident in some things, but there are a few things that could be worked on)
~I believe children should address adults with "Ms" "Mrs" "Mr" and "Mam/Sir". It's polite and shows respect...and even if the person doesn't deserve respect, it'll make them respect you more.
~I am a born-again (and again, and again, and again...) Christian. Denomination wise I consider myself Protestant-Evangelical.
