I returned home from the hospital just over a week ago, but I'm still not sure what I'm supposed to do for eating. About half of what I eat settles well, while the rest isn't so certain for a while. I do like food experiments, but this isn't what I have in mind for such experimenting.
To top it off, my main night nurse called in sick this past Saturday and won't be back until at least next week. Thankfully, the only night that wasn't covered was Saturday, so not nearly as bad as previous experiences have been. My current nursing is very good at rearranging schedules so they get everything covered. It meant a couple late nights training people, but at least my parents didn't have to stay up late.
In my last post, I mentioned I had plenty of time to think when I was in the hospital. One item that ran through my head was CHAMP Camp. Last year was my tenth year as a counselor, that means I have been going as a counselor longer than I went as a camper. I enjoy working with the kids, and that camp is now held closer to home, but is it time to stop going?
Last year, I bunked with the administration people due to space constraints. I hardly got to work with the campers and felt like an outsider when I did go to one of the kids' cabins. Without any other nurses available, dad is my only choice for a day person. He likes it okay, but not like I do, and it takes away his vacation time doing something he basically doesn't have a choice about. The past few months have also been hard for me, my body has really started to show its quad age and is taking more work in areas I didn't expect.
When I left the hospital, I had concluded not to do camp at least this year. However, now I started recruiting a new camper, and I'm asking this child's mother to trust a lot of what I say. For that, I almost feel obligated to be there and show her I'm there to help her son. So, I'm back to thought and prayer to see what to do.
Today I contacted the schools I speak at to get scheduled for this year. With these past few months of physical trouble, mentoring a new family, and hearing of others, I'm somewhat looking forward to these talks more than usual. Thinking that these kids may someday encounter someone else like me, or even sustain an SCI, makes me feel more obligated to tell them it's okay, I just do things differently. I know that God will work differently in each child's life, but making a positive contribution is something I have long sought, and will hopefully find. Recovering from life's speed bumps is a challenge, I keep praying that I'm doing God's will and not just my own.
Wednesday, March 7, 2012
Wednesday, February 29, 2012
Sped Bump
I have been blessed with a strong immune system, high energy level, and an active life. Most days, and weeks, I'm doing something all day long, work, entertainment, something. However, on occasion I'm reminded to slow down and not take my gifts for granted.
Last week Monday, I woke up with some congestion, as I had for a few weeks, and an uncomfortable stomach. Checking into paperwork, I had my nurse relieve me of unwanted pressure, also called taking a dump. As a quadriplegic, this is something I have no control over and need to have someone else do my duty so to speak. Unfortunately, this nurse hadn't helped with this in a while and it took much longer than usual. By the time she was done, I could hardly breathe due to congestion and was exhausted, at 8:30 in the morning.
Throughout Monday, I kept switching between my vent and DPS due to feeling bloated and tired. Monday night into Tuesday it continued to get worse. At several points on Tuesday, I wished I could throw up, but my body can't do this very easily and I never did. That night continued to get worse and I had pain in my belly.
After an unproductive visit to my GP Tuesday, my parents and I went to the ER in Des Moines. After several hours, they shoved an NG tube down my nose to my stomach and everything started improving. The next three days were spent in the hospital waiting to see what would happen and possible surgery at any time. Thankfully, surgery wasn't in God's plan and I was able to come home yesterday. I am still pretty tired, but thankful to be home.
During my time in the hospital though, I saw God's care several times. I had a few times that I needed immediate suctioning, with my O2 dropping quickly. Thankfully I was given experienced nurses during these times that knew how to suction without guidance from me. I have had times when nurses thought they knew what they were doing, but needed much coaching to get it done.
I was given lots of time to stop and think this past week as well. More of that will be coming soon, but I'm thankful to be back to nearly normal once again.
Last week Monday, I woke up with some congestion, as I had for a few weeks, and an uncomfortable stomach. Checking into paperwork, I had my nurse relieve me of unwanted pressure, also called taking a dump. As a quadriplegic, this is something I have no control over and need to have someone else do my duty so to speak. Unfortunately, this nurse hadn't helped with this in a while and it took much longer than usual. By the time she was done, I could hardly breathe due to congestion and was exhausted, at 8:30 in the morning.
Throughout Monday, I kept switching between my vent and DPS due to feeling bloated and tired. Monday night into Tuesday it continued to get worse. At several points on Tuesday, I wished I could throw up, but my body can't do this very easily and I never did. That night continued to get worse and I had pain in my belly.
After an unproductive visit to my GP Tuesday, my parents and I went to the ER in Des Moines. After several hours, they shoved an NG tube down my nose to my stomach and everything started improving. The next three days were spent in the hospital waiting to see what would happen and possible surgery at any time. Thankfully, surgery wasn't in God's plan and I was able to come home yesterday. I am still pretty tired, but thankful to be home.
During my time in the hospital though, I saw God's care several times. I had a few times that I needed immediate suctioning, with my O2 dropping quickly. Thankfully I was given experienced nurses during these times that knew how to suction without guidance from me. I have had times when nurses thought they knew what they were doing, but needed much coaching to get it done.
I was given lots of time to stop and think this past week as well. More of that will be coming soon, but I'm thankful to be back to nearly normal once again.
Monday, February 6, 2012
Work
I'm an independent web developer, meaning I'm on my own. My bosses are my clients, I work for them, and nobody else. This means some days I have more work than I can shake my mouth stick at, and others I barely have enough to bother waking up for.
Lately, my work load had been more of the former than the latter. Fortunately, I did get an unexpected project today that resulted in more work than I thought, but it's already complete. At this moment, I don't know of anything that I'll be doing tomorrow. Therefore, I posted in one of my networking sites, Linkedin, on how to improve my marketing efforts.
What I have mainly done is word of mouth marketing, friends or contacts give me a name, or give mine, and then I have a site. This has worked well, but I want to be able to do more. My peers suggested that I define a particular market, find out where that market is active, and pursue it. Many suggestions also say to stay in a particular industry, like schools, churches, or perhaps railroads. I don't see being able to stay interested in just one topic hough, I like a variety of subjects to explore.
Therefore, after thinking and praying this weekend, I think it will be best to go with a business size instead of industry. This fits with a diversified interest group, but finding out where to market to will be harder. God has brought me along well so far, I just need to remember to continue to rely on Him and not try to go on my own. Within the next few weeks to months I hope to report a busier work load.
In other news, I spent some time last week researching multiple ways to control a computer without your hands. It was for a young boy who recently became a quad, but also for self interest. I have been noticing my mouth gets sore much faster lately than it used to, so a time may be coming that I need to adjust my system. Fortunately, several methods exist for mouse control, but most are lacking in adequate keyboard function. We'll see what's available in time, but I think the mental adjustment will be more difficult when the time comes.
Lately, my work load had been more of the former than the latter. Fortunately, I did get an unexpected project today that resulted in more work than I thought, but it's already complete. At this moment, I don't know of anything that I'll be doing tomorrow. Therefore, I posted in one of my networking sites, Linkedin, on how to improve my marketing efforts.
What I have mainly done is word of mouth marketing, friends or contacts give me a name, or give mine, and then I have a site. This has worked well, but I want to be able to do more. My peers suggested that I define a particular market, find out where that market is active, and pursue it. Many suggestions also say to stay in a particular industry, like schools, churches, or perhaps railroads. I don't see being able to stay interested in just one topic hough, I like a variety of subjects to explore.
Therefore, after thinking and praying this weekend, I think it will be best to go with a business size instead of industry. This fits with a diversified interest group, but finding out where to market to will be harder. God has brought me along well so far, I just need to remember to continue to rely on Him and not try to go on my own. Within the next few weeks to months I hope to report a busier work load.
In other news, I spent some time last week researching multiple ways to control a computer without your hands. It was for a young boy who recently became a quad, but also for self interest. I have been noticing my mouth gets sore much faster lately than it used to, so a time may be coming that I need to adjust my system. Fortunately, several methods exist for mouse control, but most are lacking in adequate keyboard function. We'll see what's available in time, but I think the mental adjustment will be more difficult when the time comes.
Sunday, January 22, 2012
Friends
What does it take to be a friend, what are the requirements? I'm sure it's different for everyone, but I'm also certain there are some basic requirements. Whatever they are, I know that I do not fulfill them very well, more likely I'm about as far from the needs as a person can get.
Unfortunately, when someone has a disability, they usually have few friends that don't share similar disabilities. The more severe and obvious the difference is from the "normal individual," the worse the situation becomes. Growing up, I had very few people, not including relatives and people I had no choice to be with, that I would call friends, mainly just one through grade school and junior high.
His father worked with mine and he lived only a few houses away on our dead end street. At first, he was forced to come over by his parents, but we did find similar interests, as most young boys do, and we remained friends for several years. In late junior high and high school though, we had different interests and grew further apart. He and his wife now live about an hour away, and we do see each other on occasion, but mainly just by happening to be doing the same thing at the same time.
During the time this first friend and I were starting to go our separate ways, another boy and I were starting to become friends. Tom's family moved to town when we were in late junior high. Since we went to the same church, school, and were only a year apart, we found ourselves sharing space frequently. Especially in high school though, we both developed our interest in technology, and loved seeing my mom come home to the family computer in many pieces with us "fixing" it.
Also in high school, I had my harem, as the principal called my group of female friends I hung out with. Most of them were regulars on the honor role and I could usually act like it, and I actually did get there a few times in college. One of these ladies was the one I prayed that God had planned as my soulmate, but that proved to be wrong as she met her husband in college. As I still have some feelings for her, I don't ever see her, or any of my harem, not that it has been more than a decade since high school.
Tom and I still get together frequently, usually 2-3 times a week, or when his wife allows is more accurate. Unfortunately, he lives half a country away, and has no intention to ever return to Iowa. He and I play an online game called Starcraft, one that we started playing together in high school. While it is fun, this is all we now do together. I have him on my staff with my company as well, but mainly as needed, and that can be more often than not. Tom and I have been friends for years, but I feel like I'm not doing my part to maintain the relationship, that we are growing further apart.
There are other people my age, relatively speaking at least, that I converse with, but all are fellow gimps, a couple exactly like me. These people I consider more friends by necessity, not ones I think we would make if our situations were different.
So, here I sit on a Sunday evening with my IM program open, six people listed, but none online or talking. For those I do talk to, I want to work toward being a better friend this year. I'm not very sure how to do that yet, but hopefully it's easier than I think.
Unfortunately, when someone has a disability, they usually have few friends that don't share similar disabilities. The more severe and obvious the difference is from the "normal individual," the worse the situation becomes. Growing up, I had very few people, not including relatives and people I had no choice to be with, that I would call friends, mainly just one through grade school and junior high.
His father worked with mine and he lived only a few houses away on our dead end street. At first, he was forced to come over by his parents, but we did find similar interests, as most young boys do, and we remained friends for several years. In late junior high and high school though, we had different interests and grew further apart. He and his wife now live about an hour away, and we do see each other on occasion, but mainly just by happening to be doing the same thing at the same time.
During the time this first friend and I were starting to go our separate ways, another boy and I were starting to become friends. Tom's family moved to town when we were in late junior high. Since we went to the same church, school, and were only a year apart, we found ourselves sharing space frequently. Especially in high school though, we both developed our interest in technology, and loved seeing my mom come home to the family computer in many pieces with us "fixing" it.
Also in high school, I had my harem, as the principal called my group of female friends I hung out with. Most of them were regulars on the honor role and I could usually act like it, and I actually did get there a few times in college. One of these ladies was the one I prayed that God had planned as my soulmate, but that proved to be wrong as she met her husband in college. As I still have some feelings for her, I don't ever see her, or any of my harem, not that it has been more than a decade since high school.
Tom and I still get together frequently, usually 2-3 times a week, or when his wife allows is more accurate. Unfortunately, he lives half a country away, and has no intention to ever return to Iowa. He and I play an online game called Starcraft, one that we started playing together in high school. While it is fun, this is all we now do together. I have him on my staff with my company as well, but mainly as needed, and that can be more often than not. Tom and I have been friends for years, but I feel like I'm not doing my part to maintain the relationship, that we are growing further apart.
There are other people my age, relatively speaking at least, that I converse with, but all are fellow gimps, a couple exactly like me. These people I consider more friends by necessity, not ones I think we would make if our situations were different.
So, here I sit on a Sunday evening with my IM program open, six people listed, but none online or talking. For those I do talk to, I want to work toward being a better friend this year. I'm not very sure how to do that yet, but hopefully it's easier than I think.
Monday, January 9, 2012
2012
We're just over a week into 2012, how has your year been going so far? I can't mine has been all that out of the ordinary. On New Year's Eve though, I did have a bit of a victory, I was actually allowed to go barefoot during our celebration! In some ways it kind of felt weird, being the only barefoot person there, but I reminded myself that is what bare footers generally experience, and there wasn't any reason not to be barefoot. However, I only got away with it by agreeing to a comprise.
The next Saturday, so two days ago, we had a party of sorts for my grandpa's, mom's father, 84th birthday. Since it was mom's side of the family, I had to wear shoes then. I had somewhat planned on it anyway, but mom didn't need to know that. So, a victory of sorts, but not one that I see lasting unfortunately.
For most of my life, I have been surrounded by medical people and a lot of various items that go along with day to day living as a quadriplegic. Due to these reasons, I have a booklet that describes in detail how to do my multitude of cares. The current instruction set was last updated when I was in my late years of high school, so, due to some asking by my current caregivers, I started to redo my book last week. The current version is 13 pages long, I'm now up to 30 pages on the new version.
I realized that things were changing with age, but you don't fully grasp it until you put it down on paper. In some ways, it's partially me being more thorough and knowing the problems I have with some of these routines, and what some nurses come up with. Now that I'm nearly complete, I wonder what I'm missing and new items will come up after training someone with it.
A few hours ago, tomorrow's day nurse called in that she was sick and the backup lady can't cover it, so it will be the first shift of the new year without coverage. The weather this winter has been very nice and warm, for Iowa at least, so it has been nice not having calls off for snow or ice. Last week I even went running errands in just flip-flops, and barefoot outside! If I had a bucket list, that would likely be an item I could cross off, go barefoot outside in January in Iowa.
For about three years now, I've been doing the reading plans on Bible Gateway. It's pretty simple, pick a plan and you will read through the entire Bible in a year. During the last two years, I have been reading through with a fellow quad friend from Florida. It has been interesting working through his questions and seeing the Bible, something I'm very familiar with, through new eyes. This year we decided to just do the New Testament as he, and I, want to look more in-depth at that section of scripture. It has been nice only reading one, or less, chapter each morning instead of three to four, but I'm not sure I'm getting much out of it yet. The later books will likely be more learning, but I haven't got my head into the shorter reading I guess.
In my last post a few weeks ago, I was working on getting my diaphragm pacemaker fixed, well I'm still working on it. Finally today the referral paperwork went through, so now I'm waiting for approval from insurance before I can make an appointment. I'm nearing a month now that I haven't been breathing, so hopefully it will be fixed soon.
Until next time.
The next Saturday, so two days ago, we had a party of sorts for my grandpa's, mom's father, 84th birthday. Since it was mom's side of the family, I had to wear shoes then. I had somewhat planned on it anyway, but mom didn't need to know that. So, a victory of sorts, but not one that I see lasting unfortunately.
For most of my life, I have been surrounded by medical people and a lot of various items that go along with day to day living as a quadriplegic. Due to these reasons, I have a booklet that describes in detail how to do my multitude of cares. The current instruction set was last updated when I was in my late years of high school, so, due to some asking by my current caregivers, I started to redo my book last week. The current version is 13 pages long, I'm now up to 30 pages on the new version.
I realized that things were changing with age, but you don't fully grasp it until you put it down on paper. In some ways, it's partially me being more thorough and knowing the problems I have with some of these routines, and what some nurses come up with. Now that I'm nearly complete, I wonder what I'm missing and new items will come up after training someone with it.
A few hours ago, tomorrow's day nurse called in that she was sick and the backup lady can't cover it, so it will be the first shift of the new year without coverage. The weather this winter has been very nice and warm, for Iowa at least, so it has been nice not having calls off for snow or ice. Last week I even went running errands in just flip-flops, and barefoot outside! If I had a bucket list, that would likely be an item I could cross off, go barefoot outside in January in Iowa.
For about three years now, I've been doing the reading plans on Bible Gateway. It's pretty simple, pick a plan and you will read through the entire Bible in a year. During the last two years, I have been reading through with a fellow quad friend from Florida. It has been interesting working through his questions and seeing the Bible, something I'm very familiar with, through new eyes. This year we decided to just do the New Testament as he, and I, want to look more in-depth at that section of scripture. It has been nice only reading one, or less, chapter each morning instead of three to four, but I'm not sure I'm getting much out of it yet. The later books will likely be more learning, but I haven't got my head into the shorter reading I guess.
In my last post a few weeks ago, I was working on getting my diaphragm pacemaker fixed, well I'm still working on it. Finally today the referral paperwork went through, so now I'm waiting for approval from insurance before I can make an appointment. I'm nearing a month now that I haven't been breathing, so hopefully it will be fixed soon.
Until next time.
Sunday, December 18, 2011
Impact
Most people would like to make a difference in the world, an impact that will allow them to be remembered in history. Last week I watched a documentary about Steve Jobs and what he did in his life to improve the world.
In my mind, he was one of the modern inventors that had influence in many areas of the technological world. The device I'm using to type this came from his company, Apple computer. It will be interesting to watch the next few decades to see how his influence is used by new inventors and companies he worked with.
I have wondered if I will have the opportunity to make an impact on society that is remembered beyond those around me. This life thus far has already increased the average life-span of quadriplegics, and I hope that I have shown others that having a severe disability does not limit a person's potential or ability to be productive. Beyond that though, I don't know if it is the plans for my life to further help others, I can pray that it is though and that someone may be helped because of it.
While people can have on impact on society, instances around us can also have an impact. A few days ago I returned home from running errands and asked my assistant to take my sweatshirt off. Somehow, the wires for my diaphragm pacemaker were pulled and stopped it working. Despite her best efforts, we couldn't get it working again and I'm now back on the vent 24/7 until I can get it fixed. I spent 25 years on the vent and barely a year off of it, but the last few days of being on it has been an adjustment. Hopefully it won't take long to fix, but that will depend on the next few days.
There are many ways we, or items, can have an influence on someone's life, good or bad. One way I have found, through another friend, is by simply clicking. The Hunger Site is a web site that companies use to help to feed the hungry, simply by clicking. Another site is Free Rice, it helps feed people while teaching vocabulary skills.
Through these examples we can give a small part to help others, but as I listen to Christmas music in the background, I think of bigger impacts. About 6,000 years ago the original humans made a decision that impacted everyone and everything in the universe afterward. Then 2,000 years ago God gave His only son for our sins. As we celebrate Christmas, remember what it celebrates and what was given for us all.
In my mind, he was one of the modern inventors that had influence in many areas of the technological world. The device I'm using to type this came from his company, Apple computer. It will be interesting to watch the next few decades to see how his influence is used by new inventors and companies he worked with.
I have wondered if I will have the opportunity to make an impact on society that is remembered beyond those around me. This life thus far has already increased the average life-span of quadriplegics, and I hope that I have shown others that having a severe disability does not limit a person's potential or ability to be productive. Beyond that though, I don't know if it is the plans for my life to further help others, I can pray that it is though and that someone may be helped because of it.
While people can have on impact on society, instances around us can also have an impact. A few days ago I returned home from running errands and asked my assistant to take my sweatshirt off. Somehow, the wires for my diaphragm pacemaker were pulled and stopped it working. Despite her best efforts, we couldn't get it working again and I'm now back on the vent 24/7 until I can get it fixed. I spent 25 years on the vent and barely a year off of it, but the last few days of being on it has been an adjustment. Hopefully it won't take long to fix, but that will depend on the next few days.
There are many ways we, or items, can have an influence on someone's life, good or bad. One way I have found, through another friend, is by simply clicking. The Hunger Site is a web site that companies use to help to feed the hungry, simply by clicking. Another site is Free Rice, it helps feed people while teaching vocabulary skills.
Through these examples we can give a small part to help others, but as I listen to Christmas music in the background, I think of bigger impacts. About 6,000 years ago the original humans made a decision that impacted everyone and everything in the universe afterward. Then 2,000 years ago God gave His only son for our sins. As we celebrate Christmas, remember what it celebrates and what was given for us all.
Monday, December 12, 2011
Parties
It was confirmed a few days ago, thirty does not gain respect from other adults, at least not your parents. My family had a few friends over on Saturday evening, mainly adults my parents' age but a couple younger ladies closer to my age as well.
We weren't going out, just staying in the house to have supper, play some games, and watch TV. As usual, I wanted to stay barefoot, since we weren't going out, I didn't see a problem with it. Apparently there's an unwritten rule that this isn't allowed, my parents would not allow it in any uncertain terms. Their reasoning consisted of such things as "we don't want to see your hairy toes," "nobody would go around the house the house barefoot when it's 30 degrees outside," and "it's gross." Great substantial facts, right? Well, you'll have to look very close to find the hair and I can fairly easily find a list of people who go outside barefoot when it's 30 degrees, or less, especially in a house that's heated to the low 70's.
I've been trying to decide what to do since then. Any time I start to think about it, I can't come up with calm responses. Three years ago this exact same thing happened, and I went on a crusade to commit suicide, and came close. I know that I have also posted about this before at other times. Unfortunately, I know my parents will not listen to me no matter what I say. My entire life has been subject to their will, they don't care about my opinions.
This time around I am rational enough to not go off the deep end as mentioned before, but it is an area that needs to be addressed. These parties, or more accurately get-togethers, aren't all that enjoyable for me in the first place. I would at least like to be treated as an adult and dress as I prefer, which is barefoot. Hopefully I can come up with something, and pray for patience on everybody's part. The next planned party is New Year's Eve, so I have a little time remaining at least.
We weren't going out, just staying in the house to have supper, play some games, and watch TV. As usual, I wanted to stay barefoot, since we weren't going out, I didn't see a problem with it. Apparently there's an unwritten rule that this isn't allowed, my parents would not allow it in any uncertain terms. Their reasoning consisted of such things as "we don't want to see your hairy toes," "nobody would go around the house the house barefoot when it's 30 degrees outside," and "it's gross." Great substantial facts, right? Well, you'll have to look very close to find the hair and I can fairly easily find a list of people who go outside barefoot when it's 30 degrees, or less, especially in a house that's heated to the low 70's.
I've been trying to decide what to do since then. Any time I start to think about it, I can't come up with calm responses. Three years ago this exact same thing happened, and I went on a crusade to commit suicide, and came close. I know that I have also posted about this before at other times. Unfortunately, I know my parents will not listen to me no matter what I say. My entire life has been subject to their will, they don't care about my opinions.
This time around I am rational enough to not go off the deep end as mentioned before, but it is an area that needs to be addressed. These parties, or more accurately get-togethers, aren't all that enjoyable for me in the first place. I would at least like to be treated as an adult and dress as I prefer, which is barefoot. Hopefully I can come up with something, and pray for patience on everybody's part. The next planned party is New Year's Eve, so I have a little time remaining at least.
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