So... it's been a while. It's been a while for a couple of reasons. The primary reason is that I started this blog for one specific purpose. That purpose was to spread the word about life as a paraplegic. Telling the story of my accident and some anecdotes of my time in the hospital are a great vehicle with which to convey a lot of the earliest issues I discovered about being a paraplegic. However, this blog is not meant to be a narrative of my injury and recovery. It is not meant to chronicle everything that happened to me in the hospital. Mostly because that would get repetitive very quickly both in substance and with any wisdom that could be gleaned from those experiences.
So while my posts may be few and far between now and then, they will continue when an issue, a story, an event, or problem compels me to share it. Maybe at some point in the future I will tell the story of my injury and recovery, but this is not /specifically/ it.
On to the subject of this post. When a man goes out to run an errand, by himself, it is almost certainly a guarantee that he is doing so because he is confident he can accomplish the errand by himself, without help. If that man happens to be a paraplegic then you can be sure that he is confident, independent and capable of asking for help.
I was just at the grocery store supplementing our stock of fruit and lunch making materials for the coming week. I used one of those hand baskets that can sit on my lap. I love those things. Big grocery karts are cumbersome and difficult for me to maneuver, though I am capable of doing that as well. In my basket I had a watermelon, two packages of lunch meat, a bag of five apples, and (Reasor's has a deal on ice cream right now by the way) two half gallons of Blue Bell ice cream. Mostly because of the watermelon, the basket was heavy (that's important.)
When I reached the check out I unloaded most of the items myself up onto the counter. Without asking the woman at the register walked around the register and lifted the watermelon out and took the basket and put it with others customers had used.
Now, I'd like to take a moment to point out two things. First, I'm aware that her intentions were both a habit and good natured. And second, that I needed the basket to carry my groceries to the car once I'd paid. I know it shouldn't have irritated me but it did; both because if I was able to lift the watermelon into the basket to start with, I could certainly lift it out and because I do know my limitations and I knew that I'd need the basket to get the groceries to the car.
Please do not assume that a person with a disability NEEDS help. A well adjusted, independent para, quad, or anyone with any other kind of disability is acutely aware of their limitations. I appreciate the fact that she thought she was helping, and I would obviously much rather experience this kind of ignorance than someone making derogatory remarks about my injury, but both are offensive. She assumed I was unable, and therefore I felt like I should be unable. I never feel more disabled than when people assume I am.
I am just a man in a wheelchair. All assumptions are off.
Saturday, July 5, 2014
Thursday, May 29, 2014
"HEY! Listen!"
Urinary tract infections are common in hospital settings. They are even more common for SCIs and those who are using, learning to use, and experimenting with catheterization. They are so common in fact, that the possible symptoms of a UTI are among those things that are drilled into our heads from the beginning of our time in rehab.
I, myself, had a number of UTIs. The one I remember least fondly was probably a month or so into my stay and it was a doozy. Generally a UTI is an infection in the urethra. It's caused by bacteria getting into that area. That's why intermittent catheterization can cause them unless absolutely sterile conditions are always involved.
Normally a simple IV and antibiotics would suffice. This particular UTI, though, required a much more potent antibiotic. It was so potent that after only a day or so it was painful when it hit my veins. So they switched wrists. The nurse that was trying to put it in my other wrist was so bad at it that I developed a fear of needles that continued for the duration of my stay.
Finally, they inserted a PICC line. A PICC line is kind of a super IV. An IV is inserted at the elbow and a length of thin medical tubing is fed into the vein. It leads up the shoulder within the vein so that the antibiotic can be administered into a tougher veined area. It freaked me out more than a little, the idea of having this tubing going through my body, even if it was just part of one arm. The UTI took a week or more to go away.
It wasn't until I was home and having to get my blood drawn every week that I forced myself to get over my fear of needles. I realized that it was something I was going to have to get used to. Fortunately, I only get my blood drawn as frequently as anyone else now. To this day I monitor myself for the signs of a UTI. Hopefully, I never get one that serious again.
I, myself, had a number of UTIs. The one I remember least fondly was probably a month or so into my stay and it was a doozy. Generally a UTI is an infection in the urethra. It's caused by bacteria getting into that area. That's why intermittent catheterization can cause them unless absolutely sterile conditions are always involved.
Normally a simple IV and antibiotics would suffice. This particular UTI, though, required a much more potent antibiotic. It was so potent that after only a day or so it was painful when it hit my veins. So they switched wrists. The nurse that was trying to put it in my other wrist was so bad at it that I developed a fear of needles that continued for the duration of my stay.
Finally, they inserted a PICC line. A PICC line is kind of a super IV. An IV is inserted at the elbow and a length of thin medical tubing is fed into the vein. It leads up the shoulder within the vein so that the antibiotic can be administered into a tougher veined area. It freaked me out more than a little, the idea of having this tubing going through my body, even if it was just part of one arm. The UTI took a week or more to go away.
It wasn't until I was home and having to get my blood drawn every week that I forced myself to get over my fear of needles. I realized that it was something I was going to have to get used to. Fortunately, I only get my blood drawn as frequently as anyone else now. To this day I monitor myself for the signs of a UTI. Hopefully, I never get one that serious again.
Wednesday, May 21, 2014
"Everybody's makin' a fuss..."
A big problem post SCI is blood circulation. The body is designed to be mobile. Not to sit around in a chair all the time. Laying down at night isn't good enough either. Legs are meant to be moved often, arms and shoulders aren't, and our skin tends to like not being pressed on all day every day.
Because of these facts there are a few ailments that can tend to befall a para or quad if they're not careful. Firstly, are blood clots. These like to form in the legs; though they can form anywhere. I, myself, got one in my left lung towards the end of my stay at Craig. But a blood clot in the leg is much more common.
Early in my stay at Craig I had to wear these really tight socks that were supposed to help with blood circulation in the legs. All I knew at the time is that they seemed very difficult to get on and off and I am glad I don't have to wear them anymore.
We were taught to look for symptoms though. For... possibly the entire time I was there, maybe only the beginning (I can't recall,) they would measure the circumference of my legs every morning and evening to make sure that they were not swollen or, more importantly that they were approximately the same size. When one leg has a blood clot it swells, significantly. It also tends to be warmer due tot he excess blood and be reddish in color.
Secondly, there is a side effect of paralysis that is tied to blood pressure and is potentially life threatening, more so than a blood clot. Autonomic Hyperreflexia, or AH, is caused by a sudden spike in blood pressure. It is most common in those with spinal cord injuries T6 or higher. If you recall from one of my early posts I am well above that. The fact that one's blood pressure is spiking means that if the cause is not seen to, it could be life threatening.
When AH kicks in the symptoms are immediate and obvious: a throbbing headache, sweating, redness of the skin, nasal stuffiness, and intense anxiety. The way I had it described to me is that there is something wrong below the level of injury and the body is trying everything it can to tell your brain what it is. So you get all of these signals going off and immediate action needs to be taken.
Most of the time it's simple: I need to pee. Bladder infections and bowel obstruction are common causes of AH and urinating may relieve the pressure causing the reaction.
The point is, I spent a long time reminding myself of these symptoms and what they could mean. I carry a laminated card in my wallet (Craig's idea) to give to paramedics who might be attending to me to let them know to be on the look out for those symptoms. I am not as constantly vigilant any more because it is automatic now. I have felt the sensations once, and hope never to again.
Lastly, pressure sores. I think everyone has heard of bed sores. We tend to warn lazy people who sleep in a lot that they'll get them if they're not careful. Well for paras and quads they are a very real and constant concern.
I sit. All day. On my butt. And due to a VERY active nerve at the top of my left leg, I can only sleep comfortably on my back or right side. So my back side doesn't get a lot of relief. If you have spent much time around me at all you have probably noticed that I shift around a lot, lift myself up for a second or two every few minutes, and maybe squirm a bit. I'm not doing it because I'm being impatient or ADHD or anything. I am doing it out of habit.
Very early on at Craig none of us could sit upright for more than a few minutes at a time. We just weren't used to it. But we had to push ourselves to get stronger. Not only that, but we couldn't just lie in bed. So in our primitive wheelchairs we would be tilted backward into a reclining position every 20 minutes. We even wore little timers that would go off to remind us. Why? Because pressure sores are so incredibly difficult to heal. Especially when you sit on them all the time.
Gradually, as we got stronger and the habit of shifting every 20 minutes became automatic, we lost the timers. It really is habit for me now to move around every few minutes to prevent pressure sores. But hey, it works. I haven't gotten a sore yet. I check most every night to make sure.... /knock on wood...
Because of these facts there are a few ailments that can tend to befall a para or quad if they're not careful. Firstly, are blood clots. These like to form in the legs; though they can form anywhere. I, myself, got one in my left lung towards the end of my stay at Craig. But a blood clot in the leg is much more common.
Early in my stay at Craig I had to wear these really tight socks that were supposed to help with blood circulation in the legs. All I knew at the time is that they seemed very difficult to get on and off and I am glad I don't have to wear them anymore.
We were taught to look for symptoms though. For... possibly the entire time I was there, maybe only the beginning (I can't recall,) they would measure the circumference of my legs every morning and evening to make sure that they were not swollen or, more importantly that they were approximately the same size. When one leg has a blood clot it swells, significantly. It also tends to be warmer due tot he excess blood and be reddish in color.
Secondly, there is a side effect of paralysis that is tied to blood pressure and is potentially life threatening, more so than a blood clot. Autonomic Hyperreflexia, or AH, is caused by a sudden spike in blood pressure. It is most common in those with spinal cord injuries T6 or higher. If you recall from one of my early posts I am well above that. The fact that one's blood pressure is spiking means that if the cause is not seen to, it could be life threatening.
When AH kicks in the symptoms are immediate and obvious: a throbbing headache, sweating, redness of the skin, nasal stuffiness, and intense anxiety. The way I had it described to me is that there is something wrong below the level of injury and the body is trying everything it can to tell your brain what it is. So you get all of these signals going off and immediate action needs to be taken.
Most of the time it's simple: I need to pee. Bladder infections and bowel obstruction are common causes of AH and urinating may relieve the pressure causing the reaction.
The point is, I spent a long time reminding myself of these symptoms and what they could mean. I carry a laminated card in my wallet (Craig's idea) to give to paramedics who might be attending to me to let them know to be on the look out for those symptoms. I am not as constantly vigilant any more because it is automatic now. I have felt the sensations once, and hope never to again.
Lastly, pressure sores. I think everyone has heard of bed sores. We tend to warn lazy people who sleep in a lot that they'll get them if they're not careful. Well for paras and quads they are a very real and constant concern.
I sit. All day. On my butt. And due to a VERY active nerve at the top of my left leg, I can only sleep comfortably on my back or right side. So my back side doesn't get a lot of relief. If you have spent much time around me at all you have probably noticed that I shift around a lot, lift myself up for a second or two every few minutes, and maybe squirm a bit. I'm not doing it because I'm being impatient or ADHD or anything. I am doing it out of habit.
Very early on at Craig none of us could sit upright for more than a few minutes at a time. We just weren't used to it. But we had to push ourselves to get stronger. Not only that, but we couldn't just lie in bed. So in our primitive wheelchairs we would be tilted backward into a reclining position every 20 minutes. We even wore little timers that would go off to remind us. Why? Because pressure sores are so incredibly difficult to heal. Especially when you sit on them all the time.
Gradually, as we got stronger and the habit of shifting every 20 minutes became automatic, we lost the timers. It really is habit for me now to move around every few minutes to prevent pressure sores. But hey, it works. I haven't gotten a sore yet. I check most every night to make sure.... /knock on wood...
Thursday, May 15, 2014
"The more you learn the less your enemy will know."
In one of my earlier posts I mentioned that my short term goal at Craig was to not have a bag of pee hanging off of my leg. That is, I didn't want to be catheterized 24/7. I was picturing myself back home, playing video games in my buddy's basement with a group of friends, and the embarrassment of the catheter on my leg.
This may seem like a short sighted goal to you. Shouldn't I have wanted to walk out of there? Shouldn't I have wanted to be healed? At the time all I wanted was to get back to life as I knew it. I wanted to be home, with my friends, and I wanted independence again. I couldn't be independent if I was constantly monitoring the fullness of the catheter and the accessibility of whatever bathroom was closest.Let me tell you that one of my biggest frustrations is that few private bathrooms have doorways wide enough to get a wheelchair through.
More than that though, I wanted to have at least one small amount of control over my body. I wanted to be able to actually control something that my body was suddenly incapable of doing.
There are basically three options for this issue. The first is to have a catheter inserted with the bag. That's probably what most people think of when they think of being catheterized. A second option is surgical insertion of a catheter through the abdomen and into the bladder. This method is generally chosen by people for whom the catheter might from the first method might be an obstacle... for stuff. *cough cough* The third method is intermittent catheterizing. Basically, the use of disposable catheters every few hours.
There are two types of disposable catheters. There are self contained catheters, that I can carry with I and use in a public or otherwise not-my-own bathroom. The others are simple catheters that I connect with an extender that empties directly into the toilet. These are generally just used at home due to their "some assembly required" nature. This presents a problem. If I forget the first kind of catheter, or for some reason need to use all that I have... well it presents an obvious problem.
That's the primary reason I carry a backpack on the back of my chair. I have to keep plenty of those handy.
This may seem like a short sighted goal to you. Shouldn't I have wanted to walk out of there? Shouldn't I have wanted to be healed? At the time all I wanted was to get back to life as I knew it. I wanted to be home, with my friends, and I wanted independence again. I couldn't be independent if I was constantly monitoring the fullness of the catheter and the accessibility of whatever bathroom was closest.Let me tell you that one of my biggest frustrations is that few private bathrooms have doorways wide enough to get a wheelchair through.
More than that though, I wanted to have at least one small amount of control over my body. I wanted to be able to actually control something that my body was suddenly incapable of doing.
There are basically three options for this issue. The first is to have a catheter inserted with the bag. That's probably what most people think of when they think of being catheterized. A second option is surgical insertion of a catheter through the abdomen and into the bladder. This method is generally chosen by people for whom the catheter might from the first method might be an obstacle... for stuff. *cough cough* The third method is intermittent catheterizing. Basically, the use of disposable catheters every few hours.
There are two types of disposable catheters. There are self contained catheters, that I can carry with I and use in a public or otherwise not-my-own bathroom. The others are simple catheters that I connect with an extender that empties directly into the toilet. These are generally just used at home due to their "some assembly required" nature. This presents a problem. If I forget the first kind of catheter, or for some reason need to use all that I have... well it presents an obvious problem.
That's the primary reason I carry a backpack on the back of my chair. I have to keep plenty of those handy.
Tuesday, May 13, 2014
"I have the greatest friends that ever could be found."
My parents and immediate family have extensive notes from both my accident and my time in Colorado. The first book of notes extensively details everyone who visited me during my stay at Saint Francis in Tulsa. They not only listed who came to visit but also who called to check in. Let me tell you, it's astounding. So many friends and family, not only of mine but of my parents, came to visit. I just went through it yesterday and I confess that I do not know all of the names in there. And yet they came to support me and my family.
While I was drugged up and numb most of my time there my parents were left mostly in a waiting room. If it weren't for these visits then I'm sure their already worried states of mind would have evolved into full blown psychoses. A coworker of my dad's even brought a home cooked Sunday dinner packed into a suitcase for them; complete with plates and silverware. This is friendship.
While I was in Colorado I had almost weekly visitors from home. Almost every weekend someone came to visit. Family, friends, fellow members of First Baptist Church - Tulsa; they all made the journey to see me. As a teenager whose Senior year of high school had been interrupted I am sure you can understand how important it was to see them all. I desperately missed home and dreamed all week every week for news from home.
Not only did so many people come and see me but I had care packages, post cards, gifts, and a lot more sent to me. It was more than a little overwhelming. People I had never met were sending me movies and books to keep my spirits up during rehab. Kirsten and my two best friends at the time were always getting news of my days and spreading the word at school. I knew that when I finally made it home that I would be blown away by how many people knew everything about me.
Every day my mom would call and talk to my aunt about what I had done that day and the progress I had made. My aunt would then email it to a list of people who had asked to be updated. Those people would then forward the emails to everyone they knew and prayer groups. The outpouring of support that I got was absolutely enormous. I know the success that I had at the time was due to their prayers and support.
Such support is vitally important to someone who has been through such a traumatic experience. I had been hurt, disabled, and flung across the country away from almost everyone that I knew. I was young and had been completely stripped of my independence. In these situations support is the most important thing of all for not only the physical strength and will power necessary to physically recover, but also to recover emotionally, mentally, and spiritually.
I could very easily have given up and discarded my faith as a hoax. I mean what kind of God would cripple an 18 year old man with so much ahead of him? A God who knows, that's who. A god who knows what is to come and what path I will follow if left without a guiding event.
We all have an events that set the tone for periods of our lives; for better or for worse. My accident continues to define me. Not because of what I lost, but because of what I became aware of that I had. The outpouring of support and the things that have happened to me since make my injury well worth it. I would not undo it if I could. I have known that since it happened and have never questioned that sentiment.
While I was drugged up and numb most of my time there my parents were left mostly in a waiting room. If it weren't for these visits then I'm sure their already worried states of mind would have evolved into full blown psychoses. A coworker of my dad's even brought a home cooked Sunday dinner packed into a suitcase for them; complete with plates and silverware. This is friendship.
While I was in Colorado I had almost weekly visitors from home. Almost every weekend someone came to visit. Family, friends, fellow members of First Baptist Church - Tulsa; they all made the journey to see me. As a teenager whose Senior year of high school had been interrupted I am sure you can understand how important it was to see them all. I desperately missed home and dreamed all week every week for news from home.
Not only did so many people come and see me but I had care packages, post cards, gifts, and a lot more sent to me. It was more than a little overwhelming. People I had never met were sending me movies and books to keep my spirits up during rehab. Kirsten and my two best friends at the time were always getting news of my days and spreading the word at school. I knew that when I finally made it home that I would be blown away by how many people knew everything about me.
Every day my mom would call and talk to my aunt about what I had done that day and the progress I had made. My aunt would then email it to a list of people who had asked to be updated. Those people would then forward the emails to everyone they knew and prayer groups. The outpouring of support that I got was absolutely enormous. I know the success that I had at the time was due to their prayers and support.
Such support is vitally important to someone who has been through such a traumatic experience. I had been hurt, disabled, and flung across the country away from almost everyone that I knew. I was young and had been completely stripped of my independence. In these situations support is the most important thing of all for not only the physical strength and will power necessary to physically recover, but also to recover emotionally, mentally, and spiritually.
I could very easily have given up and discarded my faith as a hoax. I mean what kind of God would cripple an 18 year old man with so much ahead of him? A God who knows, that's who. A god who knows what is to come and what path I will follow if left without a guiding event.
We all have an events that set the tone for periods of our lives; for better or for worse. My accident continues to define me. Not because of what I lost, but because of what I became aware of that I had. The outpouring of support and the things that have happened to me since make my injury well worth it. I would not undo it if I could. I have known that since it happened and have never questioned that sentiment.
Monday, May 12, 2014
"All of these scars should have been stains that were never washed."
In my accident I had cuts all over my face, hands, and arms. I'm also a typical male and once my wounds developed scabs I couldn't help but pick at them. My mom and my nurses all told me that if I picked at them then they would scar. Awesome.
My most prominent scars are on my hands and forearms. Someone once told me that they're almost like ones that might be attributed to a dog attack. I realize I don't need more of one than my chair, but to me they're an outward sign of what happened to me. My chair is a tool, but these scars are in my skin. They're important.
Of course my coolest scar is the one on my back. As I mentioned early on, I had surgery here in Tulsa to have titanium rods attached to my spine. The scar from that surgery is often called my "Matrix scar."
You know the scar Neo has on his back after he's unplugged from the Matrix? It looks like that. Keep it to yourself if you disagree; the comparison pleases me.
Anything that traumatizes, heals, or helps us grow leaves scars. They're not always visible, but they're there. My nurses gave me some cream or gel to rub into my scars to make them go away or obscure them partially. What would I want to do that for? It's not like people can't see that I'm in a wheelchair. My scars are part of who I am now. Plus I think they look really cool.
My most prominent scars are on my hands and forearms. Someone once told me that they're almost like ones that might be attributed to a dog attack. I realize I don't need more of one than my chair, but to me they're an outward sign of what happened to me. My chair is a tool, but these scars are in my skin. They're important.
Of course my coolest scar is the one on my back. As I mentioned early on, I had surgery here in Tulsa to have titanium rods attached to my spine. The scar from that surgery is often called my "Matrix scar."You know the scar Neo has on his back after he's unplugged from the Matrix? It looks like that. Keep it to yourself if you disagree; the comparison pleases me.
Anything that traumatizes, heals, or helps us grow leaves scars. They're not always visible, but they're there. My nurses gave me some cream or gel to rub into my scars to make them go away or obscure them partially. What would I want to do that for? It's not like people can't see that I'm in a wheelchair. My scars are part of who I am now. Plus I think they look really cool.
Saturday, May 10, 2014
"That's not ironic it's just coincidental."
Muscle spasms. Pretty much the bane of my existence after stairs.
How they work is that muscles, though unconnected from the brain, are still designed to move. The same is true of anyone, even non-paras or quads. Have you been sitting, bored, and your leg just started bouncing? It's not a conscious action, it just happens. That's basically what happens when a para or quad's muscles start spasming, but they can't stop it by just... trying to.
Muscle spasms don't start immediately after injury, and some paras and quads don't get them at all. During rehab I would have a meeting with my whole "team" (doctors, therapists, etc.) We would get together and compare notes and prognoses. Well once, maybe a month in, I was in one of these meetings and my doctor first told me about spasms. He said that they generally happen with leg muscles but could really happen with any muscle group that the paralysis effects. So for me, any muscle from the chest down.
The funny thing is, that within and hour of that meeting I had my first spasm. Let me tell you; it's bizarre. For a month the only muscles I could properly control where in my shoulders and arms. Even my neck was out of commission due to the brace I was wearing. Then, suddenly, my legs are bouncing up and down. The sensation went from bizarre, to awesome, to irritating quite quickly.
Anything can cause a muscle spasm. The most common cause for me is an uneven sidewalk. Or a brick sidewalk. I hate those. I know that they're pretty, but a bump every few inches means I really can't carry anything on my lap because my legs are GOING to spasm and I'll drop it. Concrete slab sidewalks are my best friends.
Other causes are: shift a covering bed sheet, bumping into something, or the briefest touch. The most terrifying is when my abs spasm while I'm in the shower or something like that. The chair I use in the shower is not the most stable of platforms, it's even less comfortable. But the water hitting my skin can sometimes, rarely, make my abs spasm which almost throws me from my chair. My legs and waist straighten extremely fast and my legs then start shaking. Add to that the not super stable chair and my heart starts hammering quickly due to the adrenaline.
Spasms do have a plus side. They help maintain muscle tone and blood flow. They help prevent blood clots and muscle atrophy. So they're annoying, but extremely important.
How they work is that muscles, though unconnected from the brain, are still designed to move. The same is true of anyone, even non-paras or quads. Have you been sitting, bored, and your leg just started bouncing? It's not a conscious action, it just happens. That's basically what happens when a para or quad's muscles start spasming, but they can't stop it by just... trying to.
Muscle spasms don't start immediately after injury, and some paras and quads don't get them at all. During rehab I would have a meeting with my whole "team" (doctors, therapists, etc.) We would get together and compare notes and prognoses. Well once, maybe a month in, I was in one of these meetings and my doctor first told me about spasms. He said that they generally happen with leg muscles but could really happen with any muscle group that the paralysis effects. So for me, any muscle from the chest down.
The funny thing is, that within and hour of that meeting I had my first spasm. Let me tell you; it's bizarre. For a month the only muscles I could properly control where in my shoulders and arms. Even my neck was out of commission due to the brace I was wearing. Then, suddenly, my legs are bouncing up and down. The sensation went from bizarre, to awesome, to irritating quite quickly.
Anything can cause a muscle spasm. The most common cause for me is an uneven sidewalk. Or a brick sidewalk. I hate those. I know that they're pretty, but a bump every few inches means I really can't carry anything on my lap because my legs are GOING to spasm and I'll drop it. Concrete slab sidewalks are my best friends.
Other causes are: shift a covering bed sheet, bumping into something, or the briefest touch. The most terrifying is when my abs spasm while I'm in the shower or something like that. The chair I use in the shower is not the most stable of platforms, it's even less comfortable. But the water hitting my skin can sometimes, rarely, make my abs spasm which almost throws me from my chair. My legs and waist straighten extremely fast and my legs then start shaking. Add to that the not super stable chair and my heart starts hammering quickly due to the adrenaline.
Spasms do have a plus side. They help maintain muscle tone and blood flow. They help prevent blood clots and muscle atrophy. So they're annoying, but extremely important.
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