When at Kennedy Krieger, we were lucky enough to have Wii in a mobile unit, meaning that you could take it to any of the rooms. This was amazing, since it gave a little life to the otherwise boring evenings.
My room was one of the biggest, fitting three different full sized beds. Our room had a great atmosphere because for a while, the three beds were all filled with people over 15; this allowed the nurses and aids to give us a little more slack than we otherwise would have gotten, since we some of the oldest patients. We were allowed to stay awake until midnight, blatantly flouting the 10 o'clock lights-out.
It was possible to check out the mobile Wii for the evening, having to return it at the end of the night. One of my roommates somehow managed to check out the unit and not return it. No one came looking for it, so we kept the wii for weeks.
The favorite game of choice was Mario Kart. Having not played Mario Kart during my childhood, I was at an extreme disadvantage. I got the hang of it pretty quickly, mostly due to the fact that I had fewer hours of things to do during the day than the those who still had to attend classes. Eventually the roommate who had checked out the Wii left inpatient and we were left with machine. Because he had left they failed to track down the wii for quite some time.
Click the picture for the story of Calypso, the Three Legged Green Sea Turtle, and why she's my symbol
Tuesday, July 27, 2010
Sunday, July 25, 2010
Leaving Soon
I have put off writing this post for a long time. I have known that I'd be leaving at the end of July but it doesn't seem quite real, even now. But I guess since everyone is asking I should be more specific.
My therapy at Kennedy Krieger outpatient is dwindling down. They've done all they could in the restraints that they had(i.e. back/arm surgeries); the restrictions on my arm are finally been lifted on Thursday, which will allow me to use a walker and the loftstrands(hand-crutches). Thursday also marks the day that I get the PIC-line IV out of my arm, which will finally leg me take a shower without wrapping up my arm, and most importantly, will allow this turtle to swim in a pool. We leave this Friday. Talk about a day late and a dollar short.
These past 7 months have been a never-ending stream of surgeries and after-surgery restrictions. Always fighting to claw my way up to where I was; but to tell you the truth I don't fully remember what it was to just get out of bed every morning and live my life without thought. I don't remember how to do a lot of things. The person that I was is gone, at least in part, changed after so many lifetimes of hard work, pain, blood, sweat, and tears. So much I care for is still in Colorado but it makes me nervous to return. It's like returning to a place you loved as a child; you want desperately to see it again but consciously know you'll be looking at things with different eyes.
This friday we'll pack up the last of our stuff and drive to North Carolina. I haven't been to my parents house in over a year at this point so it'll be interesting to see. Especially now that I'm stuck on the first floor. They did build a giant ramp so at least I'll be able to get in and out. Of course we'll be there during a giant heat wave, so I may be hiding inside more often than not.
After that we take a week-long road trip out to Colorado. I'm dreading that with more fervor since I don't do well in long car rides as is. Pains in my right leg, combine with back pain and the general stiffness that comes from not moving make it a hassle. I have a couple of tricks to combat this: stretching, icyhot, electrical stimulation, medication. Nothing ever works completely so I'm constantly switching between these. We'll see how it goes I guess.
Then I'll be in Fort Collins again. Only a semester late, I guess that's better than could be expected. I'll take it.
My therapy at Kennedy Krieger outpatient is dwindling down. They've done all they could in the restraints that they had(i.e. back/arm surgeries); the restrictions on my arm are finally been lifted on Thursday, which will allow me to use a walker and the loftstrands(hand-crutches). Thursday also marks the day that I get the PIC-line IV out of my arm, which will finally leg me take a shower without wrapping up my arm, and most importantly, will allow this turtle to swim in a pool. We leave this Friday. Talk about a day late and a dollar short.
These past 7 months have been a never-ending stream of surgeries and after-surgery restrictions. Always fighting to claw my way up to where I was; but to tell you the truth I don't fully remember what it was to just get out of bed every morning and live my life without thought. I don't remember how to do a lot of things. The person that I was is gone, at least in part, changed after so many lifetimes of hard work, pain, blood, sweat, and tears. So much I care for is still in Colorado but it makes me nervous to return. It's like returning to a place you loved as a child; you want desperately to see it again but consciously know you'll be looking at things with different eyes.
This friday we'll pack up the last of our stuff and drive to North Carolina. I haven't been to my parents house in over a year at this point so it'll be interesting to see. Especially now that I'm stuck on the first floor. They did build a giant ramp so at least I'll be able to get in and out. Of course we'll be there during a giant heat wave, so I may be hiding inside more often than not.
After that we take a week-long road trip out to Colorado. I'm dreading that with more fervor since I don't do well in long car rides as is. Pains in my right leg, combine with back pain and the general stiffness that comes from not moving make it a hassle. I have a couple of tricks to combat this: stretching, icyhot, electrical stimulation, medication. Nothing ever works completely so I'm constantly switching between these. We'll see how it goes I guess.
Then I'll be in Fort Collins again. Only a semester late, I guess that's better than could be expected. I'll take it.
Saturday, July 24, 2010
Nutrition
Even though my stats have all been going up, my parents are still worried that I am not getting enough nutrients. I have been drink a drink called "Boost" which is a dietary supplement drink. Tastes metallic but is otherwise alright. I guess in the long run it's a good thing, though I've had to force myself to drink them all before we leave (everything that is not either mailed/stored/eaten we will have to carry with us.
It reminds me of this:
It reminds me of this:
Wednesday, July 21, 2010
A Story of Hope: Colin Heffern
This is not someone famous but simply a guy that fate has let me meet. This fall I will be moving out to Colorado and living in one of the University apartments with my brother. The previous tenant was a guy by the the name of Colin. A quadriplegic himself, he was injured on campus and set up with pretty nice digs.
Colin is a senior at Colorado State University studying landscape architecture. In high school, he was an avid athlete partaking in golf, tennis, swimming, and soccer and excelling in all. During his freshman year at CSU, he was injured doing a belly flop into a pile of leaves and has been paralyzed below the shoulders ever since. In the spring of 2008, he had the opportunity to study abroad at the University of New South Wales in Sydney, Australia.
(That blurb was from www.swimwithmike.org, a fundraiser that uses a swim event to raise millions for athletes who have suffered serious injury or illness)
Since he is a quadriplegic, the apartment is already adapted for wheelchair use, with a roll in shower, automatic front door, and other stuff (I'm not actually sure what else, I haven't been there in person yet). Colin has made the best of his situation, graduating this past spring in landscape design. He is going to attend grad school in California in the fall.
It is one thing to hear about someone overcoming adversity, but it is another to meet (or at least talk on the phone) to someone in a very similar situation who went on full steam with his college career and beyond. Maybe this is doable after all.
Colin is a senior at Colorado State University studying landscape architecture. In high school, he was an avid athlete partaking in golf, tennis, swimming, and soccer and excelling in all. During his freshman year at CSU, he was injured doing a belly flop into a pile of leaves and has been paralyzed below the shoulders ever since. In the spring of 2008, he had the opportunity to study abroad at the University of New South Wales in Sydney, Australia.
(That blurb was from www.swimwithmike.org, a fundraiser that uses a swim event to raise millions for athletes who have suffered serious injury or illness)
Since he is a quadriplegic, the apartment is already adapted for wheelchair use, with a roll in shower, automatic front door, and other stuff (I'm not actually sure what else, I haven't been there in person yet). Colin has made the best of his situation, graduating this past spring in landscape design. He is going to attend grad school in California in the fall.
It is one thing to hear about someone overcoming adversity, but it is another to meet (or at least talk on the phone) to someone in a very similar situation who went on full steam with his college career and beyond. Maybe this is doable after all.
Friday, July 16, 2010
This Wheelchair Buisness is a Pain in the Ass
Something most people may not think about: if you spend your day sitting your behind gets sore a lot.
It's a fact that the more time the skin spends in contact with a solid surface the more likely it is to get bruised, sore, and develop sores. Now I want to say specifically that I do NOT have any pressure sores. (Warning the following link is very graphic and be prepared if you click on it). Google pressure sores some time. It is GROSS! I want to avoid them at all costs.
Since my left leg has still not moved significantly the muscles surrounding my gluts have atrophied, leaving much of the bone and joints exposed. This creates even more points of pressure on exposed skin. The only way to really combat this awful process is to soften my various seats with various types of foam, cushions, etc. And of course the best way is to lie on my stomach, eliminating the problem altogether. So I spend a lot of time sprawled out.
I'm posting this for no other reason other than it's a pain. And also, don't be offended if I don't sit up when you come to visit. Nothing personal.
It's a fact that the more time the skin spends in contact with a solid surface the more likely it is to get bruised, sore, and develop sores. Now I want to say specifically that I do NOT have any pressure sores. (Warning the following link is very graphic and be prepared if you click on it). Google pressure sores some time. It is GROSS! I want to avoid them at all costs.
Since my left leg has still not moved significantly the muscles surrounding my gluts have atrophied, leaving much of the bone and joints exposed. This creates even more points of pressure on exposed skin. The only way to really combat this awful process is to soften my various seats with various types of foam, cushions, etc. And of course the best way is to lie on my stomach, eliminating the problem altogether. So I spend a lot of time sprawled out.
I'm posting this for no other reason other than it's a pain. And also, don't be offended if I don't sit up when you come to visit. Nothing personal.
Thursday, July 15, 2010
On up days, and down days
As to be expected with all of this, there are Up Days and Down Days.
Now these come and go in a cyclic pattern, their cycling more intense since my recent round of surgeries. In the surgery on my arm, they got rid of a lot of heterotopic ossification (fancy word for extra bone formation in the arm), apparently which caused a fair amount of blood loss. They didn't give me any blood during or after surgery, so I was desperately anemic, short of the red blood cells my body needs. Though this isn't an excuse to why I haven't blogged much this past month, the low levels of energy I've had sure haven't helped.(I will be trying to post a couple times a week from now on) My Hemoglobin count, the actual molecule in red blood cells that allows transport of oxygen and CO2, was dangerously low. The body eventually make more hemoglobin but it takes time, more time if the body is also recovering in other ways such as building skin, muscle, and bone.
At first while out of the hospital there were some really Down Days. I didn't want to get out of bed because it hurt so much to move. When I did move I didn't generally do a whole lot, since I didn't have much energy. There were a slew of Good Days through in there, but at least at first the days were very bad.
Once I started PT again, things began to visibly improve. Because of the surgery to my arm, I had a weight restriction of 5 pound on that arm. HIGHLY annoying, but it turned out to do major good for me in the end. Because they were limited in the amount of work they could do, they had to adapt their strategies, now focusing on the lower back, trunk, and abs. This was enormously helpful, since this strengthened my bag and core, as well as getting rid of most of my back pain. This surgery, a pain in many respect, may have been a gift after all.
So now I am continuing to improve, empowered with a whole myriad of stretches, exercises, and movements that keep me from going stiff and limiting my pain. There are still up days and bad days, but at least the down days are getting better. I've found a few strategies that help, including medication, more stretching, electrical stimulation, icyhot, massage, etc. It's not perfect but I can now make it though the bad days when they do strike.
All in all, things are looking back up for a change. I'm feeling little by little like my old self again.
Now these come and go in a cyclic pattern, their cycling more intense since my recent round of surgeries. In the surgery on my arm, they got rid of a lot of heterotopic ossification (fancy word for extra bone formation in the arm), apparently which caused a fair amount of blood loss. They didn't give me any blood during or after surgery, so I was desperately anemic, short of the red blood cells my body needs. Though this isn't an excuse to why I haven't blogged much this past month, the low levels of energy I've had sure haven't helped.(I will be trying to post a couple times a week from now on) My Hemoglobin count, the actual molecule in red blood cells that allows transport of oxygen and CO2, was dangerously low. The body eventually make more hemoglobin but it takes time, more time if the body is also recovering in other ways such as building skin, muscle, and bone.
At first while out of the hospital there were some really Down Days. I didn't want to get out of bed because it hurt so much to move. When I did move I didn't generally do a whole lot, since I didn't have much energy. There were a slew of Good Days through in there, but at least at first the days were very bad.
Once I started PT again, things began to visibly improve. Because of the surgery to my arm, I had a weight restriction of 5 pound on that arm. HIGHLY annoying, but it turned out to do major good for me in the end. Because they were limited in the amount of work they could do, they had to adapt their strategies, now focusing on the lower back, trunk, and abs. This was enormously helpful, since this strengthened my bag and core, as well as getting rid of most of my back pain. This surgery, a pain in many respect, may have been a gift after all.
So now I am continuing to improve, empowered with a whole myriad of stretches, exercises, and movements that keep me from going stiff and limiting my pain. There are still up days and bad days, but at least the down days are getting better. I've found a few strategies that help, including medication, more stretching, electrical stimulation, icyhot, massage, etc. It's not perfect but I can now make it though the bad days when they do strike.
All in all, things are looking back up for a change. I'm feeling little by little like my old self again.
Wednesday, July 7, 2010
Thankful for Today
I'm sorry that I haven't posted in a while. I have had issues with recovering from surgery, as well technical problems with this website. I have two posts that never showed up on the website. I will repost them presently.
This is a reflection of my relationship with God and my own private religious revelation. I did not hear the angels chorusing from on high or anything like that, but I did find my own piece of a higher power.
As some of you may know I have had an interesting relationship with God from the very beginning. Though faith was not something that took the forefront of my attention before the accident, I always had a firm belief that there was a God and that I had a personal connection. Even after the accident, I maintained my belief in God, though I was not happy him. Though I was never outright angry raging against God I will say that God and I had some things we needed to work out.
This was the position I held until after my second set of back surgeries. It was then that I began to have increasing issues with pain. I've had intense back pain, causing me to be limited in my movement. I've had severe leg pain, possibly from overuse, making it excruciating for me to sit up in a chair for more than 30 minutes. With everything else that had happened, the pain wore me down. I sunk into a depression, almost refusing to move. And then new waves of pain sunk in, caused no doubt from my refusal to work past the pain.
In one of these bouts of pain, I was brought to tears. The pain was too much, the final straw to break my break (so to speak). It was hear that I broke down and really prayed for the first time in nearly 6 months. I raised my tear-streaked face and asked, "I know I've had issues with you in the past and everything still isn't clear; but I need help! I'm too tired, too broken." Though the pain didn't stop, I thought it might have lessened slightly. Exhausted I fell asleep.
It was a prayer of desperation. I had used up all my energy, my drive, and I needed help. Help was not delivered from on high that day but gradually things began to improve. One key factor in this was the start of physical therapy again; it allowed me to begin to move again, to claw my way up to where I was before. In admitting that I was lost and broken, turning to a higher power, I found my drive again. I rebuilt myself from the ground up.
Though all of this was a turning point for my recovery, I didn't really associate it with any sort of higher power. That moment came earlier today. We were running late, things were all over the place, family members were frazzled. On any one of many previous days this would have been the awful start to the day. But I woke up feeling good, my joints loose and my body ready to go. When I went outside to get in the car it was a gorgeous 80 out with only a little humidity. While I waited for my mother to come to the car I had about 4 minutes to myself.
It was in that short time that I felt an intense calm come over me, a stillness. Everything stopped; the day was clear, I felt like myself, and the world was at peace. It was in that short moment that I think my prayers were answered. I soaked up that calm as if it were a physical thing. After so much time either in pain, worried, or in pain the calm was like a warm blanket covering my entire body. Appreciating what a gift this moment was I raised my head and said "Thank you for today." I didn't need to say that this moment revitalized my spirit and my drive. All the things I will be able to accomplish from this point are due to this one moment of serenity.
Alright, it's not a sign from on high in the traditional sense but it is the moment that revitalized me. And for that I am thankful. This is not to say I have resolved all my issues with God (you get stuck in a chair, you see how understanding you are!) but I am smart enough to know when I have received a gift from something bigger than myself. Though not as dramatic as Moses on the mountaintop, I can now legitimately say that I have been touched by something that is both powerful and beyond my understanding.
This is a reflection of my relationship with God and my own private religious revelation. I did not hear the angels chorusing from on high or anything like that, but I did find my own piece of a higher power.
As some of you may know I have had an interesting relationship with God from the very beginning. Though faith was not something that took the forefront of my attention before the accident, I always had a firm belief that there was a God and that I had a personal connection. Even after the accident, I maintained my belief in God, though I was not happy him. Though I was never outright angry raging against God I will say that God and I had some things we needed to work out.
This was the position I held until after my second set of back surgeries. It was then that I began to have increasing issues with pain. I've had intense back pain, causing me to be limited in my movement. I've had severe leg pain, possibly from overuse, making it excruciating for me to sit up in a chair for more than 30 minutes. With everything else that had happened, the pain wore me down. I sunk into a depression, almost refusing to move. And then new waves of pain sunk in, caused no doubt from my refusal to work past the pain.
In one of these bouts of pain, I was brought to tears. The pain was too much, the final straw to break my break (so to speak). It was hear that I broke down and really prayed for the first time in nearly 6 months. I raised my tear-streaked face and asked, "I know I've had issues with you in the past and everything still isn't clear; but I need help! I'm too tired, too broken." Though the pain didn't stop, I thought it might have lessened slightly. Exhausted I fell asleep.
It was a prayer of desperation. I had used up all my energy, my drive, and I needed help. Help was not delivered from on high that day but gradually things began to improve. One key factor in this was the start of physical therapy again; it allowed me to begin to move again, to claw my way up to where I was before. In admitting that I was lost and broken, turning to a higher power, I found my drive again. I rebuilt myself from the ground up.
Though all of this was a turning point for my recovery, I didn't really associate it with any sort of higher power. That moment came earlier today. We were running late, things were all over the place, family members were frazzled. On any one of many previous days this would have been the awful start to the day. But I woke up feeling good, my joints loose and my body ready to go. When I went outside to get in the car it was a gorgeous 80 out with only a little humidity. While I waited for my mother to come to the car I had about 4 minutes to myself.
It was in that short time that I felt an intense calm come over me, a stillness. Everything stopped; the day was clear, I felt like myself, and the world was at peace. It was in that short moment that I think my prayers were answered. I soaked up that calm as if it were a physical thing. After so much time either in pain, worried, or in pain the calm was like a warm blanket covering my entire body. Appreciating what a gift this moment was I raised my head and said "Thank you for today." I didn't need to say that this moment revitalized my spirit and my drive. All the things I will be able to accomplish from this point are due to this one moment of serenity.
Alright, it's not a sign from on high in the traditional sense but it is the moment that revitalized me. And for that I am thankful. This is not to say I have resolved all my issues with God (you get stuck in a chair, you see how understanding you are!) but I am smart enough to know when I have received a gift from something bigger than myself. Though not as dramatic as Moses on the mountaintop, I can now legitimately say that I have been touched by something that is both powerful and beyond my understanding.
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