Monday, August 25, 2014


Some weeks, everything goes right, but others are just the opposite. Last week seemed to be a lot of the latter.

After over four years of work and waiting, my new chair arrived last Tuesday. Unfortunately, we should have left it in the crate. It didn't have several of the items it was supposed to, won't fit me, and a long list of problems. After a little investigation, I also found out the base was purchase in 2009 by a company in Florida. The on switch is missing, so I can't tell how many miles it has driven, but it has definitely traveled the country.

I also had a miscommunication with a client a couple weeks ago and I ended up overwriting changes they had made. Last week was spent getting the original changes online again along with the changes I made. Now we're working to get everything correct on the client's computer again so they can continue doing updates. Normally, I'm able to get updates complete for clients within one business day, but not last week.

With the catching up on the one client and still being flat a lot, I let an update request get buried in my email. It was two days later when the client reminded me of it that I finally got it online. I'm supposed to be trying to get more clients so I can help with insurance expenses, not lose current ones because of poor management. Mom also said that if I can't get on my own insurance with nursing coverage in January that I'll need to just go to Medicaid and see what we can do. That will very possibly mean a care facility. With the negative, their also was some positive.

Tuesday also had an interview with a potential new client. If they decide to go with me, it should be a fun site to work on. I also started back into Spanish after more than a year off. I've wanted to for a couple months, but finally took the initiative and did it.

Other than warm, this new week has potential to go either direction. We'll see what it brings by the next post.

Monday, August 18, 2014

SCI Knowledge

Last week I said that I have been noticing fewer intrigued looks when I'm out in places like the state fair. That is the case, but this past week has had more of a twist on that.

We were given a few free tickets to the fair after our initial visit, so dad and I went up again late Wednesday afternoon. The evening crowds are generally much smaller than the day and it makes for easier viewing of displays, and shorter food lines. After eating a hard-broiled egg that one egg exhibit was handing out, we stopped by a greenery display so dad could stop and help feed me ice cream (did I mention the Iowa State Fair is known for food?). A mother and, I'm assuming, son sat nearby us for a rest and to wait on other kids.

A short time later, the boy started asking me questions, why was I in a chair and how did I drive it. Very typical questions from a kid, but it had been a while since anyone had approached me in public with questions. After finding something for supper, dad and I wondered over to where my uncle was stationed on the fairgrounds selling farm equipment and a grill called the green egg. We sampled some pizza that had just come off of an egg and the son of my uncle's coworker walked around trying to see what he could do for entertainment. Sure enough, after I had been there a few minutes, he asks about how I drive my chair.

Both of these boys looked to be around the age I speak to at schools, so a couple quick questions were easy to answer, but the public wasn't finished. Thursday, I had an afternoon doctor's appointment in Iowa City, so my assistant and I left early to get lunch somewhere. We arrived in town with plenty of spare time, so in a rare event, we both got out of the van and went into the restaurant to eat. We're usually pressed for time to either get to the appointment or get home, so we normally go through the drive-up window and eat in the parking lot.

My inexperience showed as I initially went to the wrong end of the line. As the person built the sandwich I normally order at this popular sub shop, I actually had to think about choices of what to put on. Most of the time, often on weekends, mom and I give our order to dad and he returns with our sandwiches. Actually seeing the choices and knowing what to have was a nice change. Shortly after the sandwich build, we were at the designated wheelchair table munching on flattened bread. A few minutes later, a mom with three young girls sits in the booth adjoining ours.

The middle girl, probably around age five, asks her mom to see why I'm in a wheelchair. As best I could in a booth I gave a very brief history and wheelchair demo. In two days, I had more questions in public that I've probably had in a few years.

People with spinal cord injuries (SCI) are becoming more common in my area. A young man of 15 was injured this spring and came home to a neighboring town a few weeks ago. While he was at rehab near Denver, they met another family from my town whose son had just been injured. He is scheduled to return home later this week. Both of these injuries are fortunately lower levels than mine with one having some arm control and the other at least partial leg control. What the short- and long-term future is for these two will remain to be seen. In any case, kids will have more opportunity to ask questions and learn about the quad life.

Monday, August 11, 2014

Iowa State Fair 2014

Toward the end of summer in Iowa we have one thing to look forward to, the Iowa State Fair. As the musical with the same name says, it's the best state fair in the state. I go every year, with last Friday being my time to visit.

The attractions don't change much from one year to the next, but it's still always fun to go. One of the places I always go to is the Central Iowa Railroad Club's (video) train layout. They have a lot of well done modeling on their setup and it's fun to see the changes they've made. This year, a new attraction was a thirty foot tall American Gothic statue, which was painted in Iowa. You couldn't get a picture with someone at the base and tell who it was, or get a clear shot between all the people.

One Man Band
Navigating through crowds (video) with a wheelchair can be a challenge. Not running over kids or other people's feet is difficult when they're all moving around, but it's a skill I've learned through the years. Something that has changed is the amount of stares I receive.

It used to be that I would see a lot of people, especially kids, looking at this intriguing site of a guy in a wheelchair. I still do get them, but not nearly as often as a few years ago. However, with aging baby boomers, the scooter population has also exploded in the past few years. It's very likely that the two are related, but it could be that the general public is just getting used to wheelchair uses.

After visiting mostly every building, watching the one man band, touring the machinery and livestock exhibits, it was a full day. Figuring out how to cover my assistant's time was an added challenge this year, but it was a nice outing in any case. It was also a great feeling to not have insurance worries overshadowing everything and just get out to enjoy the day. As summer begins to wind down, more days out will hopefully continue.

Monday, August 4, 2014

Morning Catches Evening

In high school I started to read the Bible mostly every night, but slowly. I just one chapter every night, no matter where it ended. After graduation I increased to two and eventually three chapters at a time. This is a habit I continue to follow today, nearly fifteen years later. There are nights I miss, if I'm too tired or we get a late start for some reason, but I generally get my nightly reading in.

A few years ago, a friend wanted to get into regular Bible reading and maybe we would get the Bible read in a year. I did a little searching and found the reading plans at Bible Gateway. We looked over the options and picked one, but we were already behind starting in February. Simply reading two days' worth at a time would get us caught back up though.

Unfortunately, the busyness of life got to my friend's schedule too much and I lost my reading partner after a couple weeks. I didn't see a good reason not to continue, so I just keep going with online reading in the morning and the physical Bible before bed.

After the first year, I encouraged another friend to read along with me online and it proved to be a learning experience for both of us. We did different plans for three years until I took 2013 off to read daily articles by Answers in Genesis. However, I took up the morning reading routine at the beginning of this year.

My nightly reading started with Genesis 1:1 in early December 2013, with my morning reading doing the same on January 1. I have stayed about the same distance apart in my readings for several months, but my morning reading has been catching up to nights since June. It looks like this week, in the last half of Isiah, my morning plan will catch, and pass, my night schedule.

The NIV Bible was revised in I believe 2011, and that is the NIV that Bible Gateway uses. I don't like how some words are translated, so I switched to NKJV online. My Bible is the 1984 revision of the NIV, so it has been interesting comparing the translations. I also have a hard time concentrating when reading and my mind tends to wonder off. Going through an area again has been helpful for spots I missed as well. By next week, it looks like my morning will be in the lead, and we'll see what else comes up in the quad life.

Sunday, July 27, 2014


A few years ago at one of my school talks, a student asked me what was my favorite part of prayer. I thought this was quite the question coming from a second grader and not one I was prepared. My mind swirled for a minute wondering what he meant, the beginning, middle, or end maybe? The confusion must have shown on my face as a few of the students pointed to the board behind me where the four parts of prayer were listed, Adoration, Confession, Thanksgiving, and Supplication (ACTS). This now became easy, my favorite and easiest part is thanksgiving.

As soon as I say that I can already hear the voices, "Wait a second, you can't control or feel anything below your shoulders, you can't breathe on your own, you rely on help from someone for pretty much everything, and the easiest part is thanksgiving?" In short, the answer is a resounding yes. No, it isn't always easy, but with very little effort I can always think of something to be thankful for.

One easy one is the multitude of caregivers I have that help me with everything, especially my parents. We also are thankful for a partial answer to prayer Friday. Insurance will now be funding my night care through January 26, 2015. That still leaves daytime hours and figuring out cost for insurance, but it's a lot better than last week.

It has been slow lately, but I'm also thankful for the work I have through VMT. I know a lot of other quads that don't even have that much, so it is something to be glad about. Other items include living outside a care facility, being able to help others, being surrounded by caring friends and family, and many more.

This has been a week of giving thanks for many different occasions, we'll see what comes in the next one.

Monday, July 21, 2014

Wearing Down

I use my mouth for everything I do, so I take care of it the best I can With using an electric toothbrush, flossing, and using mouth rinse, my dentist usually has good reports. This was the case at an appointment a couple weeks ago, but he had something new to report, my teeth are wearing down. We joked about the local water supply, but it's just a result of so much use. I was reassured though that when needed caps can be placed and everything will be good as new. My teeth however, are not the only thing wearing out.

The Energizer bunny is said to keep going and going and going, I am not the Energizer bunny, I'm not pink. After all these months of working on one appeal after the next, keeping track of everything, looking at alternative funding sources, and alternative living places, my battery is nearly out. My family's fuzes are also getting short. Even if we do get insurance to fund my nursing, we can't afford to keep the plan. If I get my own plan, the whole mess could start over again.

Friends keep saying to contact the media or try this route or that route and this or that government person. They are very well meaning and only trying to help and I greatly appreciate the ideas.
Sunset over the Lake
Unfortunately, it's just getting to be too much all at once. Last week, I was having a few "quad days" as I say and now on two antibiotics due to a UTI with two different infection types. I was nearly ready to give up. Just call one of the nursing homes that could take me, move in, go on Medicaid completely, and be done with it all. Fortunately, when you lean on God, He gives you strength when you need it most.

Last week also was very nice weather in Iowa, and we were able to go out to the nearby dam, have a picnic, a take a short walk (a dam walk as I say). My wheels got covered in mulberries that required some scrubbing, but it was still nice. Saturday evening provided the biggest recharge though.

My very best friend and I play a game called Starcraft, and have since we were in high school (over 15 years). Due to busy family life and other entertainment creeping in, it has been over a year since we played together. However, it worked Saturday that he, his wife, and I could all play for a short while. It was great finally getting together with friends for a while and get back to a time before all this started.

Another appeal was sent out Friday with a different doctor doing the review. We'll see what God's plans have for the next week.

Monday, July 14, 2014


With continued funding for nursing uncertain, I spent more time last week looking at care facilities. To my knowledge, there are six places in Iowa that will take someone with my needs. The closest one said no, citing I'm too much work, and another one is currently full. One I contacted is basically a hospital and doesn't take long-term cases, as I would be. That leaves the field cut by half already. Another one in northeast Iowa currently has an opening, but they have a high turn over rate in clients, so they don't know what availability they will have in late August. The last one on my call list was in southeast Iowa in another small town, Fort Madison.

I love Fort Madison as it's a great place to watch a plethora of trains as well as barge traffic on the Mississippi. We went to watch trains in Fort Madison in April and saw quite a few. The care facility I contacted is interested in me and has openings, so my parents, caregiver, and I checked them out Friday.

The director was a good salesman, telling us everything we wanted to hear. The rooms are good size, about twice the size of the place in Des Moines I looked at, and have windows that look out onto the rest of the building, unfortunately not train tracks. However, it's a typical nursing home in that all the people I saw were well advanced in years. Another thing the director talked about was funding, through Medicaid.

We asked about keeping some sort of insurance for better funding, but he only talked about government funding. In thinking about equipment, he was talking about getting a ventilator for backup when I said I already have two. He was then surprised to learn that we own these vents and can continue to use them. A big difference with private insurance and Medicaid/Medicare funding is equipment purchase.

Insurance buys an item completely, even before it's in possession of the patient. That's how they paid $45,000 for a wheelchair in 2009 that I have yet to see. Government funding rents an item, indefinitely. A $15,000 ventilator can be rented for $500-$1,000 per month for several years, well beyond the time it takes for the item to be covered. Therefore, if a person moves, they don't get to take equipment with them.

What will come of living situation, I don't know, but at least a possibility exists of staying in the state.