Monday, December 30, 2013

Last post for 2013

Well, this is it, it's the last Monday of the month and of the year. I did my annual year in review last week and covered the highlights of what happened. It has been one of ups and downs, but that is pretty typical. At the end of this year though, I wonder what is in store for the next.

On Christmas Eve, my parents received a letter that our, my, health insurance plan doesn't meet the new regulations. Therefore, we will have to switch plans. What this new plan will be, what it will cover, or even how to get it, are all questions we don't know answers to.

The plan I'm on now allows us to hire our own caregivers, they don't have to be through an agency. It is less expensive for the insurance company and it gives us much more flexibility. Nursing agencies have to have a incensed nurse, LPN or RN, to cover my medical needs. We don't have that restriction, so I have had aids and people with no formal medical training help take care of me. It has worked well in my years with SCI and given my family and I more covered time than we likely would have otherwise. If the new plan doesn't allow this, life may change drastically.

Since August, the nursing agency I use has been trying to get another night person, but they have not been successful. Since their main office is over an hour away, they claim that's part of the problem, but they also don't seem to be looking very hard. If they were required to cover day and night, it likely would not happen. Even if they did find people, insurance limits how much they spend per day, so we wouldn't be able to get near enough hours for my parents to work or to cover all of my medical needs throughout the day.

My mother sustained serious injuries at the time of our car accident as well, not like me, but she has a lot of pain and trouble walking. She does a lot for me, but she can't do all my cares. Dad works long days as the principal bread winner in the family and can't take off all the time to help me.

The only remaining option would then be to live in a nursing home. To my knowledge, only two in Iowa take someone with my needs, and I've been to both. Neither of them have anywhere near the level of quality care I need and don't have safe conditions for me.

This past Saturday was warm enough I could go out and watch trains. My assistant and I stayed in the van, but it was great to get out of the house, even skipping footwear, and do something fun. Unfortunately, I'm concerned I may not have many of these experiences left.

Matthew 6:25 says "Can any one of you by worrying add a single hour to your life?" Jeremiah 29:11 also says "For I know the plans I have for you,' declares the Lord." I have been reminding myself of these two verses a lot the last few days. It is hard not to think the worst and worry about what will come. I have seen God's plan in looking back at the life I've been given and it will continue. We shall see what the new year will bring.

Monday, December 23, 2013


Early Merry Christmas everyone! With just a little over 24 hours remaining, procrastinators are likely starting to get their gifts. I'm finished with everything, as long as UPS delivers on time that is.

Yesterday was the first of two family Christmas gatherings. We had 43 people all in my grandparents' house, including me. I probably take up enough space for at least two people, so maybe you could say 44. I have enough space to basically turn around and maybe move about a foot or two. Their is something to say about a meeting in a house, it does make it feel much more like a family gathering. However, seating is definitely at a premium. If you want to keep your spot, and don't bring your own chair, then you don't want to move. With a few young kids toddling around, I'm always a little nervous of backing over one.

The next get together is a little more spacious and not quite as many people, so it's easier to move around. Both sets of my grandparents are getting up there in years, so we may not have many of these full family Christmases remaining. Seeing cousins and kids that you only see once a year is something I look forward to. Unfortunately, it's starting to get to the point that, with babies especially, I have to think who belongs to which family.

As you celebrate this year, remember what the day commemorates. The birth of a baby, as foretold for 4000 years, that came to save us from our sins. Commercialization of Christmas has become worse every year, so remember to take time and reflect on the true gift of Christmas.

Monday, December 16, 2013

Invisible? Maybe

Last week I read a blog post by Ami Claxton, Ph.D. called "Social Isolation: Are People With Disabilities Invisible?" Dr. Claxton's husband, wheeler, is a fellow quadriplegic. He has a lower level injury than I do and is able to breath on his own, but deals with many of the same issues as I do. The article goes on to explain several social complications presented to families like mine. I suggest reading it first, I will wait until you return.

Welcome back, I hope you liked the post as well as I did. For the most part, I agree with Dr. Claxton's blog, but there are a few things I would change about it. First, as a C2/3 vent dependent quadriplegic, I am definitely not invisible. I use a 400 pound wheelchair with large rear wheels, am a couple feet long, and, until three years ago, use a mechanical ventilator that constantly makes noise. Any time I'm out in public, I get noticed by anyone in the vicinity. Invisibility would by highly advantageous at times, but that is not a luxury I have. Rather than invisible, I would argue more toward unknown, misunderstood, or even scared.

As I have said in previous posts, I require someone to be with me 24/7, this includes while on the rare social outing. This gives me the added challenge of always needing to cover two in case of paying for entry and feeding more than one. Most caregivers are older than me as well, so if I'm out with friends my own age, I have to also try to fit my assistant into the conversation. This can be difficult when she is near retirement age and decides to talk about her grand kids' activities or, better yet, her husband's stomach issues while having supper.

For a few years, I attended a young adults' group at my church. We generally met two Fridays a month, once for Bible study and again for a fun night. One year, we met almost exclusively at my house. It was accessible and obviously easy for me to get to, but it did get crowded quickly. It also got tiresome asking my parents to prepare for company so often, but it did work and the other attendees were very helpful in cleaning up afterward. One meeting in late November everyone started talking about what to do for our Christmas party. After a few suggestions, one person offered meeting in their parents' basement; it had a big screen TV, Wii, and plenty of room for everyone. I almost just kept my mouth shut and just figured I'd stay home, but I asked if it was perhaps a walk in basement (I do have portable ramps).

Their faces turned from glee of party planning to disappointment, it wasn't accessible. They offered ideas of carrying my chair down the steps, but knowing the full weight of my chair and fragility of it, I turned down the offer. After about a week, it was decided we would meet in the church basement. It was a fun time, but not what they had been looking forward to a few weeks earlier.

Over the next few years, we primarily met at church, but I didn't make it every time. Last year, the group did area mission type work, like sorting items at the local thrift store whose sales purchase Bibles for missionaries. That kind of activity is great for a church group, but not for someone who has no use of his hands. So as to not be the proverbial talking bump on a log, I didn't attend any of last year's meetings. This year, I have been removed from the email list and don't know what they're doing or when they're meeting. Since I didn't attend or show interest last year, I understand, but it is nice to at least know what's going on.

Social isolation is an unfortunate big side effect of having a severe disability. Almost any time I'm in a group of people, I see more backs than faces. In these situations, I also don't know what to do, I am not up on a lot of current events, especially sports, and don't know what to talk about. To be social, you need to have been socialized first.

In the case of an evening event, it gets even more difficult to plan. I only have an assistant on Friday nights, and she doesn't drive my van. Therefore, I require my parents' help for any such time. Then I factor in how long I should be up in my chair and if I can participate. Therefore, I've become very used to being "friends" with my computer and hanging out in my room. It is nice to have alone time, but real friends are great to.

Fortunately, my parents have friends that we invite on occasion, and I have church activities I'm required at weekly and another a couple times a month. These are currently plenty of interaction for my taste. Maybe next year will see a change and I can get out more often.

Monday, December 9, 2013


Winter arrived this weekend with waking up Saturday morning to a temp of -3 outside. Sunday was warmer, but it snowed most of the day. The total was only a couple inches, but it still makes everything white and blinding in the sun. Officially, winter doesn't arrive for another 12 days, but the cold and snow that comes with it has already shown.

I committed one of the big mistakes in the quad life, I relied too much on others. When you have an assistant 24/7, it's easy to let them help out with daily needs. However, you still need to keep track of what's going on and be a responsible adult, that's where I messed up.

It probably doesn't come as a surprise that I take a number of prescription meds. I'm told I take a lot less than some people, but they are a part of life. Medications don't grow on trees, at least the ones I take, so they need to be ordered monthly. I have it so that I can order most of my prescriptions all at the same time, it makes them easier to keep track of and my pharmacy only has to be bugged by me once a month. Unfortunately, one got off the rotation and has to be ordered at a different time, this is the problematic one today.

Last night, my night nurse cancelled due to being ill and a replacement couldn't be found. So, my main day assistant came in for a short time to do my night cares before my parents took over. When she got my night meds, this is when she noticed it was the last of one of them. Their wasn't another bottle waiting with the others, so I only had one in my travel bag.

First thing this morning I called my pharmacy and reordered the drug and told the person that I needed it today. I asked my parents to stop by after work to see if it was ready and they were told it was out being delivered. As I write this, the pharmacy closed almost three hours ago and it hasn't arrived, so I'm assuming it isn't coming anymore. The missing med helps control muscle spasms, so it just means my arms and legs will have fun flopping around more tonight while I attempt to sleep. As long as my arm doesn't bang against my DPS plug and stop me breathing, it won't be a big issue.

I may have A LOT of experience in the quad life, but I still make mistakes. This is one I'm thankful doesn't come with major consequences, but God does like to give me wake up calls like this. I need to keep better track of things myself, and not always depend on those around me.

We shall see what the next week brings, hopefully warmer temps are part of it.

Monday, December 2, 2013

Early December

First, sorry about last week's post's lack of sense and direction. I have unfortunately been a bit under the weather for the last two weeks and didn't think about writing until the last minute. That's actually not uncommon, little to know planning, but I don't recommend it with a fuzzy head to start with. Thankfully, today has been an improvement from the last several. For the first time in many weeks I finally had a good night's sleep and had much clearer lungs today.

With it being the first work day of the month, I had to finish up billing and start new tracking for the month. I was happy to find that November was more than three times busier than October. It's a nice feeling to be productive and working rather than just sitting around waiting for something to do. So far, it looks like December should be busy as well.

The start of December also means time to think about Christmas and celebrating Christ's birth. It is fun to decorate, see houses with lights, and listen to Christmas music, but the real meaning for the celebration is quickly getting lost in the shuffle. All these things aren't bad, I currently have piano Christmas music playing on iTunes with lights in my windows and a Christmas train tree a few feet in front of me, but we need to remember the "reason for the season." Thee ministry I follow, Answers in Genesis, is currently running billboard ads saying what Christmas is. It is an area that many people need further education and I'm glad to see it working.

That is about all I have to report this week. Have a great start to a new month and stay tuned for next week!

Monday, November 25, 2013


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 18, 2013


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.

Monday, November 11, 2013


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.

Monday, November 4, 2013


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.

Harvesting canola in Farming Simulator
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.

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.

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.

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.

Chilling out on a fall day.
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.

Friday, August 9, 2013

CHAMP Camp 2013

Time flies when you're having fun, or just busy finding things to do. This summer has been a great one for weather, so I have been out as much as possible. One of those times was not long after my last post, at CHAMP Camp. This year could be summarized as the year of water.

This was camp's third year in Indiana, my second time. I arrived on Friday evening to find that the main water pipe had broken, under the main sidewalk into the grounds. This meant that to get to our area, we had to go through a building or take a rather circuitous route on another sidewalk. With the pipe trouble, we also could not drink the water from the faucets or use it for cleaning equipment.

Saturday was orientation day for the counselors. The day went well in learning about our campers and each other, but it was a long one, not ending until 11:00 that night. However, since my cabin, Elm, took care of orientation and decorating on Saturday, we had Sunday morning free. Dad and I went down to the lake for a couple hours to enjoy some quiet time and see if we could find any fish. All we came across was a baby skunk, but fortunately the little stinker didn't pay much attention to us. While we were away though, one of the counselors had a mild heart attack. I guess the best place to have such things is while surrounded by medical personal, but he ended up eventually having a triple bypass.

Sunday afternoon was camper arrival; starting immediately after lunch. The very first camper to arrive was one from Elm cabin, and the one dad and I were scheduled to greet. Thomas was familiar with the grounds due to other camps, but this was his first year at CHAMP Camp. After he and a few other campers arrived, the wind started picking up. A short while later, we found ourselves in a major downpour. Unloading medical equipment that kids depend on for breathing and can't get wet during major rain is a challenge. Fortunately, we didn't have trouble with that due to finding ponchos, but the
Elm cabin
storm blew down a tree that took out the electricity. Equipment was safe and dry inside, but we couldn't plug it in. Seven out the estimated nine generators necessary generators were found, but thankfully the power came back on before night came and they were needed.

The next few days went well with campers doing various activities at different locations. In previous years, campers and counselors from different cabins are put together into trail groups that go out to activities. This year, the cabin groups stayed together and went out to the various locations. I was wondering how this would work, but I liked it and was able to get to know the campers and counselors I was working with much better.

Wednesday was lake day, the day when everyone spent the entire day by the lake, including for lunch. The morning went well, being in charge of fishing again, we had several kids on and off the dock. However, as we were eating lunch, it started to rain.  Just about the time we should have headed back out to the water, we were all put in the bathrooms due to oncoming storms. Nothing major ever came, but we didn't get to go back out to activities and instead were bused back to the cabins.

Thursday was the final day, and we said a fond farewell to all the campers and counselors and packed the van to go. Unfortunately, the van had been in the wet weather all week and had a flooded engine that wouldn't start. After a couple hours of waiting, another counselor towed the van into the sun to further dry out. This trick worked and we were able to get on the road, just two hours after we had planned.

Despite the trouble we had, the week went very well. God's hand was evident in the medical emergency we had and in keeping the campers safe and healthy throughout the week. I'm not sure what 2014 will bring, but it might be another year to work with the kids.

Friday, June 14, 2013

Quad Life Roller Coaster

I am actually still here, not that you can tell by my posts though. The past several weeks of the quad life have had several ups and downs, with even a few loops added in. Unfortunately, most of the downs have been worked related.

Just when I think things are looking up, they get shot down again. One of the design companies I work with had me do a quote for a redesign on a site I have done for them for several years. It was a simple rework, but anything is good for work. About a week later they mailed me that the client made one change, to go with a Wordpress platform, and therefore the designer would not be using me. I wasn't even given a chance to remake my bid, I was just told no. Wordpress may not be an area I'm the most experienced in, but how do you get practice and experience if you're not allowed to do work with it? Hopefully a project will come up that I can work on, but that may be quite a while.

For the past several years, I've had a dream of running a computer basics class; teaching fundamental computer use and helping people improve their skills. With work being slow, I decided it was time to finally give a try and see how it worked. With this being a computer 101 course, I thought advertising online would not work well, so I did an ad on radio, newspaper, and put flyers around town. Today was the day that people were to come find out about the class and signup, two people showed up. A total of four had called to enroll, two of them being the ones that came. Now I'm stuck with the dilemma of trying to have it with just four people or cancel it. I'm currently leaning toward the second choice, but not set on it yet.

Since my last post, Iowa weather has remained cold and rainy, with snow in early May. Thankfully, it has warmed up enough that I've been able to get out barefoot again. My body does much better when I can skip footwear, it's something I notice every year. With fewer muscle spasms and calmer muscles, it's much nicer to get out. Hopefully the warmer temps will stay around through the rest of summer and fall, but Iowa weather is best unpredicted.

Next week, I plan to leave for my volunteer week at CHAMP Camp. With missing last year due to the broken leg, I somewhat feel out of the loop. To my current knowledge, I will be bunking with the older boys and going on the activities with them. I have always worked with younger kids, so teenagers will be a different experience. Another former camper turned counselor has said he can't wait for the week to come, that it's his favorite seven days of the year. I can't say that, but I'm not sure which way I am about it.

On the one hand, I'm looking forward to being useful again and being active, but on the other I'm not looking forward to the toll the week takes on my body. The skin wounds that I've been dealing with for six years were finally starting to improve, although one is not again. After sitting so much for the week, I know they will worsen, but I don't know by how much. I noticed that several of the long time counselors are not returning this year, I think this one has to be my last.

That will be all for this post. Next time could be about the loop a couple caregivers have given, but we'll see. I also need to touch on trouble with DPS and looking ahead in life.

Thursday, March 7, 2013


Last August, my father and I volunteered to help with a boys' group at our church called Cadets. Since then, we have been in charge of seven boys that range from first through third grade. It has sometimes been a struggle knowing what to do, but it generally was a good time. Yesterday was the last regular meeting of the year and the boys worked on posters to display at an end of the year area Cadet meeting called Cadet-O-Rama. Our group, or cadre, did a family tree badge earlier in the year, so that is what they made their poster on.

With this age group, they weren't exactly sure how to accomplish the task, so our co-counselor and my father made up examples. After dad's was finished, he said he should have started with me since I'm the end of our family line. It has occurred to me before that, without children, I'm ending my family's portion of the tree. Being surrounded by kids, I guess it just stuck a little more than at previous times. I would love to get married and have children, but that has not been in God's plan for this life He has given me. I have done several dating sites, but the free features only go so far. Getting every feature is pretty expensive, so I just remain browsing through matches, but never able to speak with anyone, a lot like real life I guess.

Winter in Iowa is still holding on with continuing snow and cooler temps, but it is showing an end is near. Temperatures are forecasted to be above freezing this next week with more rain than snow expected. I'm looking forward to it being warm again and putting an end to the need of having shoes outside. In college history class, we read a letter by a Native American boy that was brought to a school to be "civilized" into the culture of the white man invading his land. At one point, he said that he "longed to be barefoot" again and was tired of being forced into shoes. In some ways, I think I know how he felt.

I think this is the end of this entry. I'm looking forward to new beginnings in spring and starting a new year of school talks in a few weeks.

Friday, February 15, 2013

February Breathing

I seem to be averaging about one post a month this year, I guess it's somewhat of a schedule to keep to. A blog I used to follow, that also followed me, was taken down a while ago by the owner. Without seeing it and how long it has been since my last post, I don't get reminded as often tho come here.

It's the day after Valentine's Day, that means in another five days, it will be 28 years since I became a quad. A lot has happened in these years, more than I can remember, or sometimes care to remember. The thought of writing a book has been circulating in my mind more along with thinking of the journey God has brought me through. It has not always been a pleasant, or easy, journey, but definitely unique to the life I've been given.

In the past few months, I have been increasing my time on the pacer again and am now going to 5:00 in the morning. I often switch back to it around 7:30-8:00, so I'm getting close to being on it 24/7. I'm somewhat excited to get off the vent completely, but nervous at the same time. The vent is somewhat of a comfort, a familiar item, while my diaphragm pacemaker is still a novelty, even after two years. There are times at night I wake up and think something is wrong with the vent, but it's just that I breathe differently on the DPS. I also have an idea of what amputees call a phantom limb now. A few times, it has felt like my vent tube was pulling on my trach funny, but I didn't have a tube on. Just like you have your limbs all your life, hopefully, I've had tubes long enough that my mind is used to them.

Mid-February also means it's time to start looking ahead to the next few months. I have mailed the schools I plan to speak to this year and am waiting to hear back. This will be the first year I use pictures of when I was on the vent to show the change. It may be a benefit or a distraction, I will have to determine how it goes. I also went ahead and applied to be a counselor at CHAMP Camp this year.

For camp, I haven't quite decided how I'm feeling about it. With missing last year, I'm kind of out of the loop with last year's new kids and activities. I'm looking forward to seeing everyone again, but also concerned about being up so much. June is four months away though, so a lot can change from now to then. See you, my non-existent readers, next time!

Saturday, January 12, 2013

The Times

I knew it had been a while since I last made an entry, but didn't realize it had been a month. During the break I have been ill and have had some busy days as well. Also since my last post, we had the school shootings in Connecticut. I feel sorry for all the families involved with it, but it's an unfortunate result of the world we live in.

When tragedies like Sandy Hook Elementary occur, people often ask how could a loving God let such a thing happen. I see it as a wake up call, bringing our attention to the world we live in. For an entire generation now, the Bible has been banned from public schools and evolution taught as fact. This teaching says that man is just an accidental byproduct of a random sequence events and that life has no meaning. In evolution, death is normal and is all that we should expect to get out of our time on earth.

With kids growing up being taught this is what they are, it's not surprising that school shootings and mass murders are becoming more frequent. People are simply acting out according to what they have been taught and what they believe. Keeping with the same line of thinking, it is also not surprising that humanism, better known as atheism, continues to grow as well as "gay" marriage and abortion. The world is getting further away from God and is becoming increasingly pervious.

Recently, I read a blog entry by Ken Ham of Answers in Genesis that said about 44 percent of Americans believe humans and animals were created basically as we are today. Despite the increase in evolutionary teaching, that number has pretty well stayed the same in the last 20 years. That's great to hear that it hasn't dropped, but it also means that nearly 66 percent of those poled don't believe we were created mainly as we are today. Mr. Ham doesn't go into the details of this study, but I'm guessing the 66 percent believe in some sort of evolutionary basis.

Reading the Old Testament, you can see a repetitive cycle of God's chosen people, the Israelites, rejecting God and doing as each person saw fit. They are then given warnings, and turned over another nation that mistreats them. After a time, the Israelites repent of their sins, return to the Lord, and He restores them to freedom and prosperous times again.

Looking at today's world, I sometimes wonder if we're not in the warning stages to return to God or suffer the consequences. In Luke 13, Jesus is asked about some people who were killed when a tower fell on them, if they were worse sinners than others. His answer was that we need to repent or will likewise perish.

John 3:16 says "For God so loved the world that He gave his one and only Son..." As sinful humans, we don't deserve anything, but God so loves us that He provided a way for us to be saved.

A number of people I know are expecting to have a child, or two, sometime in 2013. I am excited for them, but am also sad to see the world these children will be born in to. I pray that it changes for the better, but history has shown us that it is not likely, and we do not fully understand God's plan for our futures.