Sunday, October 13, 2019

Long Short Nights

At the end of June, I learned I would be losing my main night nurse. My initial thoughts went to how many nights would not be covered and all the extra work for my parents. August and September had several shifts open, but not as many as I feared. Unfortunately, this week has been the struggle I feared.

Since last Saturday, October 5, through tonight, only three nights have been covered. Tonight will be the third night in a row without a nurse. Thankfully, my main day assistant has come for a couple hours every evening to help with my night routine. This allows dad to get to bed earlier and get more sleep, but still less than normal and then he stays up half the night.

On Thursday, I had my annual meeting with my county DHS worker. This meeting was to make sure all my paperwork and documentation, that mom coordinates, is in order for the state of Iowa. The state then either approves, or denies, the multitude of exceptions I have that allow me to stay home. I was told that most plans like mine aren't being allowed. However, it's cheaper for the state to have me at home instead of a facility, so I should be approved.

The head supervisor of my nursing agency also comes to this annual gathering. He said they currently have about 140 openings for nurses. Due to regulations for nurse training, he said there are fewer people graduating college in the nursing field than are retiring. Therefore, the openings that are already nearly impossible to fill will only get worse.

A family I know in Florida has an eleven-year-old son with the same injury level, and care needs, as me. They have been without any night coverage for three months and his parents cover the time. They hardly ever get to spend time together, or much with their four other children, as a result. With the late nights, mom has been having increasing pain in her legs and other health issues.

Unfortunately, it's an increasingly common issue with the quad life, but their is hope. Last week, this family in Florida had a promising interview with a nurse and will hopefully get two nights a week covered. It isn't much, but anything helps. I keep reading and seeing messages how God answers prayer for those who ask Him. I know sometimes the answer is no, but I keep praying for some relief for my family, but also all those in similar situations.

A lot can change in a few day's time, so I will see what is in God's plan this week.

Sunday, October 6, 2019

Mr. Joel Returns

October started off busy with a doctor's appointment in Des Moines, monthly billing for web clients, and most importantly, speaking at two schools. I enjoy working with kids, but always wonder what will come out of their mouths.

Both schools have been on my visit schedule for several years. However, Thursday was two classes of second with two new teachers. I received very little communication from them in arranging my visit time, so I wasn't sure what to expect. The school secretary was friendly and opened the door for me as she has for years. I didn't know which class I was visiting first, so she helped me find one of the teachers while the students were at recess.

Finding one of them, I introduced myself and my assistant and wondered where to setup. The instructor said the two classes would be joining to hear my presentation all at once. This was news to me, but I've learned over the years to roll with the changes. A few minutes later, a total of 28 kids were all listening to Mr. Joel, most anyway.

It was tricky driving around legs as one class filled a carpeted area in-front of the room, but I stayed clear of everyone. After watching a couple videos and doing my regular routine, the class seemed to listen well and had good questions.

Friday found me at another school with a combined 3rd and 4th grade class totaling ten students. This was a familiar teacher as well and she had shown my school videos a few days earlier. As a result, the kids had prepared a few questions before I came, 34 unique questions. With these older students, they had thought out everything a little more carefully and it was an excellent few days that I enjoyed.

Later this month, I'm scheduled for two more grade schools and a college class. As I was afraid would happen, I don't have a night nurse before either of the younger students. It could get fun working with a room full of 7-8 year olds and little sleep.

I'm thankful I was able to share the quad life with these young minds and I enjoy it every year. I pray God will allow me to continue beyond this fall, but I will wait to see His plan.

Sunday, September 29, 2019

End of SCI Awareness

September was spinal cord injury (SCI) awareness month. I followed the example of a friend and posted something about SCI every day on my Facebook page. It has been a fun and rewarding exercise.

I tried to limit myself to three paragraphs of information and start out with general information before talking about my own experience. With writing here every week, I'm used to having more space, but I was able to stay in my self-imposed rules. It helped that I made a list of 30 points in August so I didn't have to think of a topic. I knew what was coming next, could allude to it, and somewhat plan what to write in my head.

A few people said they enjoyed the updates and learned a few pointers. Some days received a lot of feedback with others hardly getting any interaction. If I had several days in a row with little interaction, it started getting frustrating, but I somewhat expected it for certain topics.

In the over 34 years I have lived with my injury, I have seen a lot of change. Technology has greatly improved for therapy, independence, and the ability to connect with other families. Having a certain month designated to raise awareness of it also helps, but I can't say I heard any mention in regular news channels.

With tomorrow's conclusion, it will be nice not trying to remember to do an update. However, it has felt good to more actively teach about the life I've been given and have more interaction with friends, even though it's just virtual.

During all this, I had eight shifts missed in September, only four were scheduled. I had to cancel two meetings I was scheduled to attend and had more trouble with my pressure areas. These are normal parts of the quad life, but I only barely mentioned them.

October will be another challenging month with nine shifts already scheduled to be open. Winter weather and illness looks early this year, so that number could raise. I'm increasingly thankful for the coverage God has provided through all these years and keep praying relief will come soon.

Sunday, September 22, 2019

Controversial Buns

When you have absolutely no control of your body, you're completely dependent on others for absolutely everything. It's a regular part of the quad life, but can result in odd conversations.

Regular readers will know very well that I am dealing with pressure sores. One is on my extreme upper right leg, another on the coccyx, and the third on my left glute muscle. All three have been around for several years, two over a decade, and are a constant concern.

Twice a day, every day, dressing changes are done with different creams being applied to help promote healing. I think they somewhat help, but VERY slowly. Dressings are held on with tape and I'm good to go for several hours. The controversy comes in when deciding how much ointment, dressing, tape, and what size of gauze to use where.

I currently have five different people that do my wound care. Every single one of them thinks they do the job the best and gives tips for me to pass along to the others. Along with different opinions on treatment, each one also provide different reports on healing progress. I can see my back end without some precise mirror handling, so I generally rely on reports from my caregivers.

Early this week, I heard from three different people of a new large skin tear in a certain area. With taking tape on and off of new skin twice a day, further abrasions aren't uncommon. However, this was more than I typically heard. Since it sounded like a significant area, I try to carefully word a reminder to everyone to please be careful with placing tape, use very little, and also use caution when removing it.

Any such mention brings up more advice than I have caregivers. It's a challenging juggling game sometimes, especially when I don't have control of my hands in order to juggle.

No matter the debate, I'm thankful God has provided the people I currently have. Each one means well and is concerned for my care, but sometimes may not see what someone else does. I am also thankful these wounds have improved over the last few years, but look forward to a day when such problems no longer exist.

Sunday, September 15, 2019

Preaching Again

In October 2018, I preached at a friend's church near Louisville, KY. A few weeks later, on October 21, I gave another message at a church in northern Iowa. That service concluded a busy first full year of preaching. Unfortunately, that was the last time I have had the opportunity.

I was scheduled to help at a church in February, but the service was cancelled due to icy conditions. I had hoped to get asked to preach a few times this summer, but I never heard from anyone. So far this year, my home church has had three times our minister was gone and someone needed to fill the vacancy. Everyone who gave messages did very well, but I wasn't asked to do any of them.

A friend of mine has the same license I do and he said this was the slowest year he has ever had. However, I spoke with him again a few weeks ago and found out he preached three times since May. I have people no longer use my web development services after meeting me. The stigma that someone with a physical disability is unable to work is still strong and I've seen it in my life. I wondered if that could be why I wasn't getting calls or if my preaching and gravely voice were just that bad.

Thankfully, I received a long-awaited email a few weeks ago asking me to preach. If everything goes as planned, then I should be giving a message at a local church this evening. It felt great getting asked to help and I've had to remember how to review again. I had a sermon prepared for February that I didn't get to use, so I decided to use it and mainly just have to review my notes.

I was scheduled to have a nurse overnight this weekend, but we got a call late Friday evening she couldn't come due to an injury. I was foreseeing preaching after two nights without anyone, but the nurse thankfully came last night.

With September officially halfway complete, my winter hibernation is approaching. I hope to get opportunity to teach God's Word again, but I'm thankful for at least one this year. The next few months will determine if I can stay living at home and be available, or if I need to go somewhere and no longer be active. Either way, I will follow God's plan and serve where He wants me.

Sunday, September 8, 2019

Airline Empires

While flat, I'm limited in how much I can do. I'm still able to watch YouTube and Pure Flix as well as play Farming Simulator, listen to an audio book, and read physical books. It's actually quite a list, but I still like variety as much as possible. Therefore, I added another casual game, Airline Empires.

Trains are my primary interest, but there are few games associated with them. Aircraft and the airline industry are a close second interest, so related entertainment is fun. Airline Empires is completely played through your browser, no downloads or costs involved. It's very simple with no graphics, action, or motion, just primarily spreadsheets and Google Maps. However, I am really having fun with it.

As the name suggests, you own an airline. At initial startup, you choose a plane to lease and what city to base your airline, anywhere in the world. My airline is called Air Canadia with bases in Toronto and Vancouver, Canada. After establishing your home airport, you pick where to fly, ticket prices, and what services to offer your passengers.

Destination Map
It sounds straight-forward, but you also compete with other players' airlines that may offer the same flights. Therefore, you have to adjust prices and keep the competition from taking your passengers, and profits. Expenses include aircraft leasing, and purchasing, as well as gate rental at airports, employee wages, advertising, etc.

I have been playing now for about two weeks and find numbers and planning going through my head. Each game day takes 30 minutes in the real world. Therefore, one week passes in 3.5 hours, a month in 15 hours, and so on. Ordering a new plane can take 4-6 weeks for delivery. I don't want it delivered in the middle of the night and sit idle, costing maintenance fees, before I get to it. So I calculate when to order aircraft of different types so they become available at appropriate times.

As of this writing, I have 29 planes with only three owned. My fleet goes to 30 different destinations with a daily profit of over $7.3 million (I choose destinations carefully). It has been a fun venture, but doesn't take much time. The world my airline is in is at May 21, 1983 and goes to the end of 2010.

The quad life can be full of variety, and I'm thankful God allows me to stay active through various activities.

Sunday, September 1, 2019

Thankful and Cautious

The weather feels like fall, even though August just ended. It was a challenging month with several open nights, but still productive.

With three weekends without night coverage, I only got to physically attend church a couple times. Answers in Genesis had a dinner for supporters on August 24 followed by two days of teaching conferences in Des Moines. I was able to attend the supper, but that was all. It felt like I missed out on a lot for the month, but could still be active as well.

To my family's surprise, September's schedule came with only three nights not covered. It is still just my two remaining night nurses, but we are thankful to have the time primarily filled. One nurse, that now covers four nights a week, drives over an hour to come. She gives great care and has been reliable for many years, but has already been asking what is being done to find another assistant.

Fall weather should hopefully be good for a few months, but winter is uncertain with long driving distance. Also in September, my primary day assistant's daughter is getting married and will be off a few days. I'm happy for her family, but she is always missed when gone.

With an already full month, I delayed contacting grade schools to schedule talks. I offered dates in October and November, but don't know if I'll have night nurses to allow me to sleep before going. I feel like I'm playing a guessing game while watching time slip by.

This week, mom noticed there wasn't advertising in our local paper for the nursing position. I asked my nurse manager about it and was told since they didn't have any responses, they stopped newspaper ads and would try mailing known nurses instead. It seems like giving up to me, but I was told the agency isn't finding help anywhere and I shouldn't expect to either.

At least God has allowed another month with nearly full coverage. I'm thankful for this gift and will continue to pray that someone is found. It's part of the quad life that will always continue, but I look for help from the Lord and His plan in this as well.