Ankylosing Spondylitis
My brother's had a debilitating musculo-skeletal disease for about three years now. It's a rare disease. I remember him being misdiagnosed multiple times by different doctors. They thought it was Arthritis, but it was his muscles in his hip that hurt him, not bones. Finally he was diagnosed with Ankylosing Spondylitis. (link: http://www.rheumatology.org/public/factsheets/as.asp)
Since I was little, I've known my brother to really care about few things. He wasn't that interested in school, but his grades were incredible. He was in advanced classes and tried to teach my precalculus when I was probably only ten years old. His strength was always math. He was "unique" in highschool - he dyed his hair colors and spiked it up and wore extra baggy jeans. At home the things he did most included spending time with his girlfriend, whoever that was at the time, doing creative things because he's always been artistic, and skateboarding. He skateboarded for hours and hours a day on ramps he designed and built himself. His life was skateboarding, and he was very close to going pro... but I don't think he wanted to "sell out". He also had a job working with the stage crew for concerts all around New England. He set up the sound equipment. He loved his job, and I was always jealous because he got backstage passes to amazing bands all around. The only part that sucked was helping him move amps to and from his truck whenever he needed to move them.
My brother is only twenty three years old. When he found out about his disease, I know he cracked. He broke down, and he hasn't been the same since. He can't work - he can't lift heavy objects; he's barely mobile. He could have some sort of job that doesn't involve lifting, but I don't think his pride will let him. It took a very long time for the system to work out for him to receive a check from the government, and it was a painful wait for everyone in our family. Even when checks started coming, my brother wasn't happy. He wants to work, he wants to earn money and he wants to be normal. The worst part about the disease wasn't about working, though. My brother couldn't skateboard anymore. It's much too painful. That in fact how my brother thought he injured himself - skateboarding. But he knew from years of recovering from injuries that the pain he felt wasn't temporary pain from a fall - he couldn't ever escape it, and it only grew worse. The medication prescribed to him took a while to be specified. During his misdiagnoses and even after the rightful one, since his disease is so rare, they weren't sure how to treat it. Now he's on several pain killers, but there's nothing out there to "cure" him. There are some times when he feels "good enough", and he'll go out and skateboard for around an hour... But that always means that for the next few days he's in bed. I know all he wishes he could do was skateboard. It meant everything for him.
Now, my brother's got new hobbies. He's still incredibly talented when it comes to his skill in creativity. He paints, he sketches, he does graphic designs, he's carved wood into roses... He can create anything through art. It's always been amazing. He also likes to go hunting. It's not much of an active thing, so it's good for him. In our back yard we have archery set up during the spring, summer and fall. My brother goes ice fishing during the winter. He recently built an ice shanty. He's good at ice fishing and hunting, and he's got a lot of cool stories from it. Other than his hobbies, he keeps busy spending time with his girlfriend of three-ish years, Janie. She's the sweetest girl anyone could ever meet, and if you've met her or spent time around her you'd believe it. She's good for him in every way possible, and our family really loves her.
I think my brother's got a lot of blessings he can count, but it's still a daily struggle on his behalf. When I was little he used to be my hero, and I'd follow him around everywhere - usually problematic, especially when his girlfriends came over(!). We didn't always get along, and we still don't always. He's my big brother and he can be a huge jerk, but he's still a pretty big part of my life. I just felt like recognizing him for a moment today.
(link: http://www.rheumatology.org/public/factsheets/as.asp)
Since I was little, I've known my brother to really care about few things. He wasn't that interested in school, but his grades were incredible. He was in advanced classes and tried to teach my precalculus when I was probably only ten years old. His strength was always math. He was "unique" in highschool - he dyed his hair colors and spiked it up and wore extra baggy jeans. At home the things he did most included spending time with his girlfriend, whoever that was at the time, doing creative things because he's always been artistic, and skateboarding. He skateboarded for hours and hours a day on ramps he designed and built himself. His life was skateboarding, and he was very close to going pro... but I don't think he wanted to "sell out". He also had a job working with the stage crew for concerts all around New England. He set up the sound equipment. He loved his job, and I was always jealous because he got backstage passes to amazing bands all around. The only part that sucked was helping him move amps to and from his truck whenever he needed to move them.
My brother is only twenty three years old. When he found out about his disease, I know he cracked. He broke down, and he hasn't been the same since. He can't work - he can't lift heavy objects; he's barely mobile. He could have some sort of job that doesn't involve lifting, but I don't think his pride will let him. It took a very long time for the system to work out for him to receive a check from the government, and it was a painful wait for everyone in our family. Even when checks started coming, my brother wasn't happy. He wants to work, he wants to earn money and he wants to be normal. The worst part about the disease wasn't about working, though. My brother couldn't skateboard anymore. It's much too painful. That in fact how my brother thought he injured himself - skateboarding. But he knew from years of recovering from injuries that the pain he felt wasn't temporary pain from a fall - he couldn't ever escape it, and it only grew worse. The medication prescribed to him took a while to be specified. During his misdiagnoses and even after the rightful one, since his disease is so rare, they weren't sure how to treat it. Now he's on several pain killers, but there's nothing out there to "cure" him. There are some times when he feels "good enough", and he'll go out and skateboard for around an hour... But that always means that for the next few days he's in bed. I know all he wishes he could do was skateboard. It meant everything for him.
Now, my brother's got new hobbies. He's still incredibly talented when it comes to his skill in creativity. He paints, he sketches, he does graphic designs, he's carved wood into roses... He can create anything through art. It's always been amazing. He also likes to go hunting. It's not much of an active thing, so it's good for him. In our back yard we have archery set up during the spring, summer and fall. My brother goes ice fishing during the winter. He recently built an ice shanty. He's good at ice fishing and hunting, and he's got a lot of cool stories from it. Other than his hobbies, he keeps busy spending time with his girlfriend of three-ish years, Janie. She's the sweetest girl anyone could ever meet, and if you've met her or spent time around her you'd believe it. She's good for him in every way possible, and our family really loves her.
I think my brother's got a lot of blessings he can count, but it's still a daily struggle on his behalf. When I was little he used to be my hero, and I'd follow him around everywhere - usually problematic, especially when his girlfriends came over(!). We didn't always get along, and we still don't always. He's my big brother and he can be a huge jerk, but he's still a pretty big part of my life. I just felt like recognizing him for a moment today.
(link: http://www.rheumatology.org/public/factsheets/as.asp)