The last Monday in November means we're just in time for Thanksgiving. Unfortunately, since last week I can't report any progress on the wounds, but there are always things to be thankful for.
It sounds like next month will have most of the night shifts covered as long as weather isn't an issue. Therefore, tomorrow should be our last late night until Christmas.
Another item is that I started on a new site project late last week. I first heard about it in August, but then the designer left her company for another job. However, the site owner went to another company and they gave me the design. It's apparent this person hasn't designed for a web site before, but it's a good project.
For the last few days I have been having trouble with stuffed up nose and needing suctioned (clearing lungs mechanically) a lot. I haven't felt bad, but have been petty tired. This evening has gone well, but I didn't get a chance to think about what to write tonight. Maybe after Thursday more will come up to talk about.
Have a happy Thanksgiving!
Monday, November 25, 2013
Monday, November 18, 2013
Caregivers
Monday seems to come quickly while Friday is late in coming. It is once again time for another installment of The Quad Life.
Following up from last week's post, the pressure sores have improved! Two separate people at different times confirmed with measurements that they have indeed improved in the past six weeks. I'm very thankful to hear this news to answered prayer. However, early Sunday morning, my night nurse informed me that a third place has now opened on my butt. At least two of them are improving at this time.
The big news this week though is about caregivers. As a vent dependent quad, they are a requirement to have 24 hours a day, seven days a week, every week of the year. Their are no caregiver holidays in the quad life either, so someone is always within ear shot if not within a few feet. For me, that means caregivers through a nursing agency, private hire, and family.
For the past several months, my family and other caregivers have been having trouble with an agency nurse. They escalated in the past few weeks to where I had to have stop coming. Since the agency has been unsuccessfully looking for a replacement for a few months, this now means we have one night a week not covered. I did not want to do this to my parents, but being scared about getting physical harm is not a way to live either. I like living in rural Iowa, but being an hour away from a metropolitan area makes finding help a challenge.
A major cough or flu has also been going around in my area and my main day caregiver has become ill with it. So, that means starting tomorrow morning, I have 24 hours without my regular caregivers. That means my parents will be missing work as they do a tag team of covering the day and be short on sleep as the night is covered. They do very well, but I'm concerned about aggravating the pressure wounds as I don't get moved as much as I usually do.
These are days I pray to be few and far between with strength given to all three of us to work through them. The night situation will be the most difficult, but I pray that a solution will be found soon. This past week has seen answered prayers, maybe this week will as well.
Following up from last week's post, the pressure sores have improved! Two separate people at different times confirmed with measurements that they have indeed improved in the past six weeks. I'm very thankful to hear this news to answered prayer. However, early Sunday morning, my night nurse informed me that a third place has now opened on my butt. At least two of them are improving at this time.
The big news this week though is about caregivers. As a vent dependent quad, they are a requirement to have 24 hours a day, seven days a week, every week of the year. Their are no caregiver holidays in the quad life either, so someone is always within ear shot if not within a few feet. For me, that means caregivers through a nursing agency, private hire, and family.
For the past several months, my family and other caregivers have been having trouble with an agency nurse. They escalated in the past few weeks to where I had to have stop coming. Since the agency has been unsuccessfully looking for a replacement for a few months, this now means we have one night a week not covered. I did not want to do this to my parents, but being scared about getting physical harm is not a way to live either. I like living in rural Iowa, but being an hour away from a metropolitan area makes finding help a challenge.
A major cough or flu has also been going around in my area and my main day caregiver has become ill with it. So, that means starting tomorrow morning, I have 24 hours without my regular caregivers. That means my parents will be missing work as they do a tag team of covering the day and be short on sleep as the night is covered. They do very well, but I'm concerned about aggravating the pressure wounds as I don't get moved as much as I usually do.
These are days I pray to be few and far between with strength given to all three of us to work through them. The night situation will be the most difficult, but I pray that a solution will be found soon. This past week has seen answered prayers, maybe this week will as well.
Monday, November 11, 2013
Videos
For the past several weeks, I have been working on a video from my point of view. I had a camera strapped to my head and tried to show things I normally do. It didn't turn out exactly as I had it planned, but it still did pretty well.
When I started it, the weather was still warm, so I had my normal attire of t-shirt and shorts. Of course I ran out of time to do everything in one day, so I needed to record multiple times. Between camera trouble and busyness of life, it ended up taking over a month to compile. I finally finished the last segment Saturday, meaning I was outside in summer outfit in November. It did feel pretty nice, but it was only in the upper 50's. While I was going about my business of how I get in the van, a guy drove by on a lawnmower wearing a coat and stocking cap. I have yet to get any comments from someone that noticed, but I'm sure it will come.
This was also the first time I used my camera and associated software to do anything other than shorten and upload a video. It was a bit of a learning curve, but not bad. Unfortunately, I noticed after I uploaded it that it had cut off the bottom of the shot where my hands and legs were. I specifically retook segments because they weren't showing my view with hands and knees in peripheral vision. So, I figured out how to adjust it and uploaded again. The final product does give a good overview, but things could still be better.
Saturday was also a video day for demonstrating stick skills on camera. Some people have asked me how I do things with a mouth stick, so I finally will be able to show them. The video didn't get nearly as close in as we thought it was, but it still shows pretty well. After I put it together, it came to 20 minutes long! I started uploading to YouTube, but it was estimated to take ten hours to get online. I have a doctor's appointment tomorrow, so I think I will have the video upload while I'm out.
These productions were fun projects, but not ones I care to repeat. As I've heard other people say, I don't like hearing my own voice. I also really noticed the breaks I take while pacing and the shoulder shrugging on the stick video. It's a major drawback of this breathing system, one I'm still struggling to come to terms with.
Tomorrow's appointment will be to check progress on my pressure sores. My assistants think they're improving, so we'll see what the doctors say. Hopefully by next week I can report an improvement in that area.
When I started it, the weather was still warm, so I had my normal attire of t-shirt and shorts. Of course I ran out of time to do everything in one day, so I needed to record multiple times. Between camera trouble and busyness of life, it ended up taking over a month to compile. I finally finished the last segment Saturday, meaning I was outside in summer outfit in November. It did feel pretty nice, but it was only in the upper 50's. While I was going about my business of how I get in the van, a guy drove by on a lawnmower wearing a coat and stocking cap. I have yet to get any comments from someone that noticed, but I'm sure it will come.
This was also the first time I used my camera and associated software to do anything other than shorten and upload a video. It was a bit of a learning curve, but not bad. Unfortunately, I noticed after I uploaded it that it had cut off the bottom of the shot where my hands and legs were. I specifically retook segments because they weren't showing my view with hands and knees in peripheral vision. So, I figured out how to adjust it and uploaded again. The final product does give a good overview, but things could still be better.
Saturday was also a video day for demonstrating stick skills on camera. Some people have asked me how I do things with a mouth stick, so I finally will be able to show them. The video didn't get nearly as close in as we thought it was, but it still shows pretty well. After I put it together, it came to 20 minutes long! I started uploading to YouTube, but it was estimated to take ten hours to get online. I have a doctor's appointment tomorrow, so I think I will have the video upload while I'm out.
These productions were fun projects, but not ones I care to repeat. As I've heard other people say, I don't like hearing my own voice. I also really noticed the breaks I take while pacing and the shoulder shrugging on the stick video. It's a major drawback of this breathing system, one I'm still struggling to come to terms with.
Tomorrow's appointment will be to check progress on my pressure sores. My assistants think they're improving, so we'll see what the doctors say. Hopefully by next week I can report an improvement in that area.
Monday, November 4, 2013
Entertainment
It's nearing the end of Monday, the best part of the day for me. The end of the day means I can do what I want without having a nurse in the same room with me and can be somewhat alone. However, my parents are in the next room, and I'm writing this for the world to see, not exactly all that private.
The entertainment industry does not get a lot of funding from me. I have absolutely no interest in sports, I can't remember the last time I was in a movie theater, and once I start a computer game, I tend to stick with it for a while. One example is a game called Starcraft, by Blizzard Entertainment. My best friend and I started playing it when we were in high school. Thirteen years later when Starcraft 2 came out, we were still playing it. We had both graduated from high school, gone through and graduated from college, started careers, and he had gotten married and lived in four different states. In late 2012 though, our interest shifted to a new game.
Farming Simulator 2013 is just what the name implies, a game that simulates farming. You plant and harvest crops, take care of livestock, buy and sell equipment, and watch your bank account grow, and shrink. In the eleven months I have had this game, I have easily spent nearly 1000 hours playing it. I do not see it lasting 14 years like Starcraft, but it is a good hiatus.
This past Saturday, the night nurse called in sick and a replacement could not be found. Therefore, I stayed awake by playing Farming Simulator and helped mom stay up. It's a game that can go as fast or as slow as you want, just change the speed of time with a key stroke. In fact, I have it running as I type this evening's entry. During the next two days though, I won't be farming, I have church activities for both nights. When Thursday night comes though, I'll be back to my crops again.
Living in rural Iowa, as the son of two people that grew up on farms, and having several family members in the farming industry, you get to know the job as a farmer well. I don't know that I would have been a farmer if I wasn't in the quad life, but it's possible. At least through the role of simulation, I can preteen what it's like for those around me.
Posting weekly is starting to become a habit, but I did almost forget tonight. We shall see what the next week's plans have in store.
The entertainment industry does not get a lot of funding from me. I have absolutely no interest in sports, I can't remember the last time I was in a movie theater, and once I start a computer game, I tend to stick with it for a while. One example is a game called Starcraft, by Blizzard Entertainment. My best friend and I started playing it when we were in high school. Thirteen years later when Starcraft 2 came out, we were still playing it. We had both graduated from high school, gone through and graduated from college, started careers, and he had gotten married and lived in four different states. In late 2012 though, our interest shifted to a new game.
 |
| Harvesting canola in Farming Simulator |
This past Saturday, the night nurse called in sick and a replacement could not be found. Therefore, I stayed awake by playing Farming Simulator and helped mom stay up. It's a game that can go as fast or as slow as you want, just change the speed of time with a key stroke. In fact, I have it running as I type this evening's entry. During the next two days though, I won't be farming, I have church activities for both nights. When Thursday night comes though, I'll be back to my crops again.
Living in rural Iowa, as the son of two people that grew up on farms, and having several family members in the farming industry, you get to know the job as a farmer well. I don't know that I would have been a farmer if I wasn't in the quad life, but it's possible. At least through the role of simulation, I can preteen what it's like for those around me.
Posting weekly is starting to become a habit, but I did almost forget tonight. We shall see what the next week's plans have in store.
Monday, October 28, 2013
DPS Supply Order 2013
It is Monday evening once again, another week has gone and here I am keeping up the schedule of once a week writing. I have been thinking the past few hours about what to write tonight and haven't been coming up with much. It has been a week of more trial than triumph unfortunately.
The diaphragm pacemaker system that I use to breathe it an oddity. Some would so is the person it's attached to, but that's getting too far off topic. I am one of two people in Iowa that have it, so it's a pretty small market. That makes obtaining supplies for the DPS a bit of a challenge.
There are three parts the system requires in order to function, batteries, holder brackets for the plugin, and a detachable wire. The last one only needs replaced when damaged, so it's a rarity, but the first two get regular use. Batteries last about 500 hours, so it depends on how much I'm pacing as to their longevity, the connection holders, or holder brackets, typically go for one to two weeks. They come in a pack of 30, so it lasts about a year.
As I said, Iowa market share is small for these supplies, so we don't have a supplier in the state that covers them. Therefore, I have to use a company in Atlanta, GA, called Shepherd Apothecary to get my refills. Unfortunately, my insurance only covers things in the state, so getting something covered from Georgia is not an easy task. Once you have all the paperwork in place, it's good for one year. If you're still following along, you're getting the idea, this sequence occurs every time I order supplies. I started this year's work in mid-September.
Batteries are the first item on my annual shopping list, and an example of why health insurance costs are outrageous. If I ordered them from Shepherd, it would cost me over $107 for a pack of three batteries. I'm currently averaging about a battery a month, so 12 per year, or four packs. That means I would need to pay over $428 that I can't guarantee my insurance would cover. Thankfully, I found them at an electronics supplier where I can get them for $14-$16 per battery. Insurance will not cover them because they don't come from an approved facility. So, I pay for them out of pocket, but at a much better rate than Georgia applies. The brackets however are a specialized product, so I can only get them from Shepherd.
These brackets are fortunately under $80, but have so far been reimbursed by my insurance. This past Thursday I spoke with the fourth person at insurance who gave me the fourth answer of what to do. Hopefully this one has it right, but I'm not holding my breathe (I can't while the DPS is on anyway). A friend of mine, another quad like myself, and I researched this system quite a bit before getting it, and none of this was ever mentioned.
Times like these make me trust in God's timing and look to Him for patience. Hopefully by next year a medical company in Iowa will cover supplies. Until then, the annual battle will continue.
The diaphragm pacemaker system that I use to breathe it an oddity. Some would so is the person it's attached to, but that's getting too far off topic. I am one of two people in Iowa that have it, so it's a pretty small market. That makes obtaining supplies for the DPS a bit of a challenge.
There are three parts the system requires in order to function, batteries, holder brackets for the plugin, and a detachable wire. The last one only needs replaced when damaged, so it's a rarity, but the first two get regular use. Batteries last about 500 hours, so it depends on how much I'm pacing as to their longevity, the connection holders, or holder brackets, typically go for one to two weeks. They come in a pack of 30, so it lasts about a year.
As I said, Iowa market share is small for these supplies, so we don't have a supplier in the state that covers them. Therefore, I have to use a company in Atlanta, GA, called Shepherd Apothecary to get my refills. Unfortunately, my insurance only covers things in the state, so getting something covered from Georgia is not an easy task. Once you have all the paperwork in place, it's good for one year. If you're still following along, you're getting the idea, this sequence occurs every time I order supplies. I started this year's work in mid-September.
Batteries are the first item on my annual shopping list, and an example of why health insurance costs are outrageous. If I ordered them from Shepherd, it would cost me over $107 for a pack of three batteries. I'm currently averaging about a battery a month, so 12 per year, or four packs. That means I would need to pay over $428 that I can't guarantee my insurance would cover. Thankfully, I found them at an electronics supplier where I can get them for $14-$16 per battery. Insurance will not cover them because they don't come from an approved facility. So, I pay for them out of pocket, but at a much better rate than Georgia applies. The brackets however are a specialized product, so I can only get them from Shepherd.
These brackets are fortunately under $80, but have so far been reimbursed by my insurance. This past Thursday I spoke with the fourth person at insurance who gave me the fourth answer of what to do. Hopefully this one has it right, but I'm not holding my breathe (I can't while the DPS is on anyway). A friend of mine, another quad like myself, and I researched this system quite a bit before getting it, and none of this was ever mentioned.
Times like these make me trust in God's timing and look to Him for patience. Hopefully by next year a medical company in Iowa will cover supplies. Until then, the annual battle will continue.
Monday, October 21, 2013
Weekly Updates
In my last post, I added a link back to my web site and noticed I said that I blog weekly. That has not been the case, as you can see, so I was going to change the sentence. However, I decided instead to see if I can get closer to that frequency.
One of the bloggers I follow, and have worked with, said the best way to improve your writing is to just write. That obviously makes sense, so that is what I'll try to do. Unfortunately, finding something to write about could be the problem. Every week is pretty similar to the next for me.
During the day Monday through Friday, I mainly spend my time doing work or something to keep somewhat productive. Evenings consist of supper, playing computer games or watching something on the computer, and occasional meetings. Weekends primarily are longer versions of my evenings except with the addition of church on Sunday. Since I last wrote, that is what I've been doing. Maybe this will continue, maybe not, we shall see.
Today's item of interest is that I completed a new web site, Van Ryswyck Plumbing & Heating. The site started back in March with a meeting with the site owner, designer, and myself. It got delayed for a couple months due to scheduling conflicts with the designer and owner, but I finally got it in August. I finished the building of the site and was looking forward to completing it. Unfortunately, about a week later, the designer quit the company she worked for, leaving me with no contact in the company.
Fortunately, the owner and I were able to connect and try to get the site up on their existing domain (web address). However, that was inaccessible without becoming expensive, so it was decided to get a new URL. Today consisted of registering the new address, establishing hosting, and finally uploading the completed site. Amongst the other updates of the day, I was glad to get the project finished and the client's new site available to the public.
The next may not have as much accomplished, but I never know what to expect.
One of the bloggers I follow, and have worked with, said the best way to improve your writing is to just write. That obviously makes sense, so that is what I'll try to do. Unfortunately, finding something to write about could be the problem. Every week is pretty similar to the next for me.
During the day Monday through Friday, I mainly spend my time doing work or something to keep somewhat productive. Evenings consist of supper, playing computer games or watching something on the computer, and occasional meetings. Weekends primarily are longer versions of my evenings except with the addition of church on Sunday. Since I last wrote, that is what I've been doing. Maybe this will continue, maybe not, we shall see.
Today's item of interest is that I completed a new web site, Van Ryswyck Plumbing & Heating. The site started back in March with a meeting with the site owner, designer, and myself. It got delayed for a couple months due to scheduling conflicts with the designer and owner, but I finally got it in August. I finished the building of the site and was looking forward to completing it. Unfortunately, about a week later, the designer quit the company she worked for, leaving me with no contact in the company.
Fortunately, the owner and I were able to connect and try to get the site up on their existing domain (web address). However, that was inaccessible without becoming expensive, so it was decided to get a new URL. Today consisted of registering the new address, establishing hosting, and finally uploading the completed site. Amongst the other updates of the day, I was glad to get the project finished and the client's new site available to the public.
The next may not have as much accomplished, but I never know what to expect.
Tuesday, October 8, 2013
Fall 2013
Iowa is well into the new season. Evening and morning temps are cool in the 50s, but days are still getting up to the upper 60s and low 70s. Farmers are also bringing in the year's crops, working as long as weather allows. Activities have started at church for kids and routines are becoming familiar again. This is the time of year that I don't look forward to.
Cooler temps mean the shorts and t-shirts of summer won't be around much longer and, worse yet, I have to start wearing footwear. I can tell the first few times I start putting on shoes that my body has more muscle spasms and I get more red marks on my feet. Hopefully weather will hold for a few more weeks before barefoot outings are no longer possible.
I was able to get off the vent completely for a couple months and use my diaphragm pacemaker system (DPS) 24/7. It felt great to be able to just stay on it and not have to switch back and forth. I did realize though that my nose fills up when I'm on my side and makes it hard to breathe. It's likely something I'll need to get looked at sometime. Unfortunately, I was sick a few weeks ago with a lot of air in my stomach, so I went back on the vent to help it clear up. Now, I'm on the vent for about six hours at night. In the next few weeks, I'm hoping to be off the vent again, but I'm not sure on timing.
Switching to the vent or pacemaker usually wakes me up, so decreasing time means waking up at odd times of night. I already have a hard time sleeping with meds only helping a little and I'm rarely able to get back asleep after waking up. The question will be which is more important, getting back off the vent or attempting to sleep.
The vents I use, a PLV-100, is also becoming an issue. Every month, someone comes and checks that they are working well, and once a year they are sent in for a preventative maintenance check. The company that services them is having an increasingly difficult time finding places to service my vents. They have been out of production for at least the past decade and very few people, if anyone now, still use them. Unfortunately, the new models are not as reliable and my biggest complaint, noisier. I've been warned that a day is coming soon that they will no longer be able to service my equipment and we may just have to wait until one, or both, stop working. However, with being on the DPS most, if not all, the time, insurance may not be willing to cover a new vent. The twists and turns of the quad life are always varied and seemingly never ending.
Another insurance battle is getting them to cover the supplies for the DPS. With only two of in Iowa that use the system, no one in the state carries the supplies. Therefore, I have to get approval for an out of network provider to order supplies. Once approved, they are good for a year, but I only need supply refills annually, so the cycle repeats every time I order. So far, I'm a month in to working on it and hope to be done by the end of this month.
That's about all there is to report for this entry. We will see what comes up until the next one.
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| Chilling out on a fall day. |
I was able to get off the vent completely for a couple months and use my diaphragm pacemaker system (DPS) 24/7. It felt great to be able to just stay on it and not have to switch back and forth. I did realize though that my nose fills up when I'm on my side and makes it hard to breathe. It's likely something I'll need to get looked at sometime. Unfortunately, I was sick a few weeks ago with a lot of air in my stomach, so I went back on the vent to help it clear up. Now, I'm on the vent for about six hours at night. In the next few weeks, I'm hoping to be off the vent again, but I'm not sure on timing.
Switching to the vent or pacemaker usually wakes me up, so decreasing time means waking up at odd times of night. I already have a hard time sleeping with meds only helping a little and I'm rarely able to get back asleep after waking up. The question will be which is more important, getting back off the vent or attempting to sleep.
The vents I use, a PLV-100, is also becoming an issue. Every month, someone comes and checks that they are working well, and once a year they are sent in for a preventative maintenance check. The company that services them is having an increasingly difficult time finding places to service my vents. They have been out of production for at least the past decade and very few people, if anyone now, still use them. Unfortunately, the new models are not as reliable and my biggest complaint, noisier. I've been warned that a day is coming soon that they will no longer be able to service my equipment and we may just have to wait until one, or both, stop working. However, with being on the DPS most, if not all, the time, insurance may not be willing to cover a new vent. The twists and turns of the quad life are always varied and seemingly never ending.
Another insurance battle is getting them to cover the supplies for the DPS. With only two of in Iowa that use the system, no one in the state carries the supplies. Therefore, I have to get approval for an out of network provider to order supplies. Once approved, they are good for a year, but I only need supply refills annually, so the cycle repeats every time I order. So far, I'm a month in to working on it and hope to be done by the end of this month.
That's about all there is to report for this entry. We will see what comes up until the next one.
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