Today has pretty much sucked, I feel horrible, I cant breathe without shooting pains through my back and ribs that make me wanna scream. And my lower back, since the fall, has still been bothering me, but the past few days has been getting worse, and I have a ton of pressure in my lower spine, like someone is just pulling on my spine.
So because of all this, I decided I cant go to the barn today. Well I should of just went, because now my parents wont drop the fact that they didnt see why I couldnt go to the barn, but I went to the store tonight? Umm seriously? And they just keep saying, "What do you wanna quit? Im not paying for you to just not go!"
Do they realize how much that upsets me? If I could go I would, I would do anything in the world to just feel even the slightest bit better, really anything.
And then my mom was getting mad at me because I didnt do my spanish assignment today, and its not like I had to do it today, I decided it can wait till tomorrow. I was already really stressed, and was done with school, so I figured it could wait.
So now I am just laying in bed crying and listening to Hanson.
Now my dad comes into my room pissed because I wrote about how parents just make a bad day worse on facebook! He didnt even care I was crying and upset.
Wednesday, August 31, 2011
Tuesday, August 30, 2011
A paper a wrote for English class!
So I wrote a paper for English class titled, The Crash Of Summer 2009. The assignment was to write a autobiographical narrative. So here it is!
It was August 14th,2009, and I had a ATV race coming up on August 29th. We had planned a trip to my family's ranch down south for the weekend. I couldn't wait to get on my ATV and start riding, and get ready for the race coming up. When we finally arrived, I quickly unpacked everything, and I got my bike ready and went off to ride. It was a pretty nice day, it was hot but there was nice breeze. I started driving down the main road, a long, flat, dirt road, I was having some trouble with my bike but nothing major, just needed a new spark plug.
I was having a great time just riding freely through the ranch, with the wind blowing in my face. It was about 5 minutes into my ride, and before I new it I had crashed. I was taken to the nearest hospital, which was an hour and a half away in Laredo, Texas. The ride there was horrible, we had to travel down dirt roads for a while, and the bumps were killing me. I arrived to the emergency room, and they took me in right away, and began taking X-rays.
Three days later I returned to San Antonio, and saw my Orthopedic doctor. He saw two breaks in my leg that the ER had not acknowledged. He had mentioned that he thought we had a bigger problem on our hands but he just changed subject, so I didn't think anything of it.
Over a month goes by and things had not gotten any better, things had gotten worse. My doctor than decided a MRI was needed, I asked "Do you think there are some torn ligaments?" His reply was "That would be the least of my worries" I was confused what does that mean? We finally had received the call saying the MRI was in and to come by his office. I was nervous, as I went in, thinking whats wrong. He said the MRI did come back with new injuries, so he said lets put on another hard cast and see how things go.
I had done everything the doctor told me too, so why were things getting worse? My orthopedic then decided I needed to be taken out of school and placed on Hospital/Homebound, because I was missing so much. He than ordered a bone scan to be done immediately. We had it done and than went immediately back into the doctor to have the results reviewed. He came in shaking his head, and said the results were shocking. Not only was my whole entire leg covered in what they call "hot spots" but it was so incredibly bright that it was "like a candle lit in front of you." So what does this mean? I was still confused, and scared to hear what he was going to tell me. He explained that I had Reflex Sympathetic Dystrophy also known as Complex Regional Pain Syndrome. A rare neurological disorder.
So what is this? According to the National Institute of Neurological Disorders and Stroke (NINDS), RSD is "a chronic pain condition that is believed to be the result of dysfunction in the central or peripheral nervous systems." It can cause many different symptoms but the most common are, extreme pain, sensitivity to touch, swelling, and skin changes.
I began treatment right away, but nothing was helping, I was then sent to Seattle Children's Hospital, one of the only 3 hospitals in the US that are qualified to treat this disease. While I was there I under went a pain program for children with RSD. They were able to get me walking, and I was able to wear a shoe for the first time in 8 months. Although this did not take the pain away it still helped some. It did not take long though for the RSD to get worse again, and eventually spread all over my body. We than took immediate action and sent me to Dallas Children's Hospital, where they had a new program that was like Seattle. I was there for 6 weeks and got worse day by day. I started passing out, having trouble breathing, and getting sick, because of the pain. I was sent home worse than when I had arrived with no clue what to do next.
I have tried hundreds of medications, nerve blocks, TENS unit, hydrotherapy, and of course intensive PT/OT, also known as torture. Nothing has even helped slightly. I now use a wheelchair to get around, because the pain is too bad, and I am too weak. There is still one thing I have yet to try, it is something saved as a last resort due to its risks. Its called Ketamine and they give it in high doses over the course of a week in the hospital, and it is said to help, because with this they are able to reset your nervous system.
You would think after all of this I would be really depressed, and I would hate life all together, but this has actually made me have a positive outlook on life. I have learned through this to take nothing for granted, and appreciate everything I have. I have also learned how supportive, loving, and caring my family and friends are, through this hard time. This disease has slowed me down a lot, which has made me see a lot of things I would have missed without it. I no longer see life as a whole, I see it as a ladder, or a staircase. Where every step is another part of my life, a different obstacle, I have to overcome.
It was August 14th,2009, and I had a ATV race coming up on August 29th. We had planned a trip to my family's ranch down south for the weekend. I couldn't wait to get on my ATV and start riding, and get ready for the race coming up. When we finally arrived, I quickly unpacked everything, and I got my bike ready and went off to ride. It was a pretty nice day, it was hot but there was nice breeze. I started driving down the main road, a long, flat, dirt road, I was having some trouble with my bike but nothing major, just needed a new spark plug.
I was having a great time just riding freely through the ranch, with the wind blowing in my face. It was about 5 minutes into my ride, and before I new it I had crashed. I was taken to the nearest hospital, which was an hour and a half away in Laredo, Texas. The ride there was horrible, we had to travel down dirt roads for a while, and the bumps were killing me. I arrived to the emergency room, and they took me in right away, and began taking X-rays.
Three days later I returned to San Antonio, and saw my Orthopedic doctor. He saw two breaks in my leg that the ER had not acknowledged. He had mentioned that he thought we had a bigger problem on our hands but he just changed subject, so I didn't think anything of it.
Over a month goes by and things had not gotten any better, things had gotten worse. My doctor than decided a MRI was needed, I asked "Do you think there are some torn ligaments?" His reply was "That would be the least of my worries" I was confused what does that mean? We finally had received the call saying the MRI was in and to come by his office. I was nervous, as I went in, thinking whats wrong. He said the MRI did come back with new injuries, so he said lets put on another hard cast and see how things go.
I had done everything the doctor told me too, so why were things getting worse? My orthopedic then decided I needed to be taken out of school and placed on Hospital/Homebound, because I was missing so much. He than ordered a bone scan to be done immediately. We had it done and than went immediately back into the doctor to have the results reviewed. He came in shaking his head, and said the results were shocking. Not only was my whole entire leg covered in what they call "hot spots" but it was so incredibly bright that it was "like a candle lit in front of you." So what does this mean? I was still confused, and scared to hear what he was going to tell me. He explained that I had Reflex Sympathetic Dystrophy also known as Complex Regional Pain Syndrome. A rare neurological disorder.
So what is this? According to the National Institute of Neurological Disorders and Stroke (NINDS), RSD is "a chronic pain condition that is believed to be the result of dysfunction in the central or peripheral nervous systems." It can cause many different symptoms but the most common are, extreme pain, sensitivity to touch, swelling, and skin changes.
I began treatment right away, but nothing was helping, I was then sent to Seattle Children's Hospital, one of the only 3 hospitals in the US that are qualified to treat this disease. While I was there I under went a pain program for children with RSD. They were able to get me walking, and I was able to wear a shoe for the first time in 8 months. Although this did not take the pain away it still helped some. It did not take long though for the RSD to get worse again, and eventually spread all over my body. We than took immediate action and sent me to Dallas Children's Hospital, where they had a new program that was like Seattle. I was there for 6 weeks and got worse day by day. I started passing out, having trouble breathing, and getting sick, because of the pain. I was sent home worse than when I had arrived with no clue what to do next.
I have tried hundreds of medications, nerve blocks, TENS unit, hydrotherapy, and of course intensive PT/OT, also known as torture. Nothing has even helped slightly. I now use a wheelchair to get around, because the pain is too bad, and I am too weak. There is still one thing I have yet to try, it is something saved as a last resort due to its risks. Its called Ketamine and they give it in high doses over the course of a week in the hospital, and it is said to help, because with this they are able to reset your nervous system.
You would think after all of this I would be really depressed, and I would hate life all together, but this has actually made me have a positive outlook on life. I have learned through this to take nothing for granted, and appreciate everything I have. I have also learned how supportive, loving, and caring my family and friends are, through this hard time. This disease has slowed me down a lot, which has made me see a lot of things I would have missed without it. I no longer see life as a whole, I see it as a ladder, or a staircase. Where every step is another part of my life, a different obstacle, I have to overcome.
Monday, August 29, 2011
RSD videos :)
Just some videos I like about RSD, the first 2 videos are ones that I made personally. All the other videos I do not own and are from youtube.
Monday, August 22, 2011
First Day Of School!
Well I had my first day of school, at connections academy online school. I have been on hospital/homebound for the last two years so this is kinda a big change for me. I was thinking online school would be something I could manage, unlike regular school. I was wrong! Its only my first day and I already am stressing out! It is not easy, and its really stressing me out, which causes my pain to go up. So just after one day of doing this I am exhausted and my pain level is up! I am still going to give it a shot though, as I dont really have another option. So we will see how this goes.
I already had to drop a class! I had to drop Spanish II, because last year I was aloud to use a translator on my phone, and my homebound teacher helped me a ton. So I would have failed Spanish II, thye do it different online then in public school. So now I dont get credit for the whole year of Spanish I did. :(
But Im going to take up sign language for my language, but it still sucks I lose my 1 year of language credit!
I had 4 classes to do today, Chemistry, Literature, Texas World History, and Geometry, and it took me about 5 hours today to do all the work, and its only the first day!
It was really hard on me, because I am used to the max of 2 hours, only 2 times a week! And sometimes it was less, so this is really taking a toll on me.
Friday, August 19, 2011
Some great songs that helped me through a lot!
Rascal Flatts- I Wont Let Go, this song my parents dedicated to me and my battle with RSD!
Casting Crowns- Praise You In This Storm
Kutless- What Faith Can Do
Hanson- Never Let Go
Evanescence- My Immortal
Matthew West- Strong Enough
Wideawake- Livestrong
I have more songs too, these are just a few that helped me out a lot! I hope they can help other people get through some tough times too.
Casting Crowns- Praise You In This Storm
Kutless- What Faith Can Do
Hanson- Never Let Go
Evanescence- My Immortal
Matthew West- Strong Enough
Wideawake- Livestrong
I have more songs too, these are just a few that helped me out a lot! I hope they can help other people get through some tough times too.
Thursday, August 18, 2011
You Dont Look Sick?
I hate when people say "But you dont look sick"
Just because we dont look sick does not mean we are not. Sometimes I really just wish I looked as sick as I actually felt!
Any one who lives with any type of invisible illness will understand what it feels like to be told they dont look sick, or there is no way there in that much pain.
I cant even count how many doctors I have seen, especially at the ER, that when they ask what my pain level is, and my reply is a high number like 8, they just roll there eyes or say to themselves, "8 and smiling."
Well if you lived like this for as long as I do, you learn to deal with it, and trust me no I'm not always smiling, I just try and put up a good front. If my orthopedic see's me with tears in my eyes he knows its serious.
It hurts me when people think that you have to look sick, to really be sick. You cant see a lot of things that are real, like god, hes real, but can you see him? No so same with illnesses just because you cant see there sick doesn't mean they are not!
Or I hate the stares I get when I stand up out of my wheelchair and get in the car. I just wanna yell, "Yes I have the use of my legs, but that does not mean I don't need the chair" Like do they think I use the chair because I like it? Umm no, I wouldn't use it if I didn't need it.
Here is a great video for invisible illness, enjoy!
Wednesday, August 17, 2011
Some of my favorite quotes. And a surprise!
So today I decided to share some of my favorite quotes!
"How does it feel, how does it feel to be without a home, like a complete unknown, like a rolling stone."-Bob Dylan
"May God bless and keep you always,
May your wishes all come true,
May you always do for others
And let others do for you.
May you build a ladder to the stars
And climb on every rung,
May you stay forever young,"-Bob Dylan
May your wishes all come true,
May you always do for others
And let others do for you.
May you build a ladder to the stars
And climb on every rung,
May you stay forever young,"-Bob Dylan
Once you choose hope, anything's possible. ~Christopher Reeve
"Beginnings are usually scary and endings are usually sad, but it's everything in between that makes it all worth living."
God didn't promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way. If God brings you to it, He will bring you through it.
Just because you can't see it doesn't mean it isn't there. You can't see the future, yet you know it will come; you can't see the air, yet you continue to breathe.
"I don't pray for God to take my problems away, I pray only for God to give me the strength to go through them."
“When you come to the end of your rope...tie a knot and hang on.”
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