Hot Week, Outside and Inside

I'm not sure if it's age, or just part of being a long-term quadriplegic, but this summer has seemed to be full of health challenges. My trach button has been an ongoing issue since early July. It's doing okay, but I think I will be revisiting further options. However, that's not the area I'm watching.

July 13 was the day I returned to a trach button, but the morning started with an ultrasound of my kidneys and bladder. This isn't an unusual check, but one I haven't had since 2019. It's usually fine, but this time showed bladder stones as well as possible swelling of one kidney and a nick (or something) on the other.

One test therefore leads to another test for better pictures. Unfortunately, paperwork confusion and insurance approvals delayed testing until this coming Thursday, August 31. After that, it will be a procedure, more tests, or both! While I wait on testing, my body gets annoyed. Stones are a good source of infection as well as irritation.

I took in a test last Monday, to the hospital's confusion, and finally got results Friday and started an antibiotic that night. All week I have felt like I'm a small furnace as well as being tired and having no appetite. In addition, I had a rash start under one leg that spread to the top and continued up my back.

The skin problem was familiar to a previous time, so I used medicine I had on hand and it has nearly cleared up. My night nurse noticed the antibiotic is related to one I'm allergic to, but hope it will work. A few hours after my second dose Saturday morning, I noticed I was having trouble concentrating or forming sentences. That was a side effect and big problem with a med marked as an allergy, so I hope it passes.

Thankfully, I could stay home most of this past week. A few days had temps over 100 with heat indexes even higher. It was an interesting week in the quad life and I hope for calmness ahead.

A Fair Visit for 2023

Since 2016, I have been volunteering at the Ark Encounter Gospel Outreach booth at the Iowa State Fair. Each year has different experiences, and this one did not miss out.

My first day was Friday, August 11. Weather in Iowa in August varies, but it was a hot day with temps predicted to be around 90°. My caregiver and I got setup with my self-contained microphone, gospel tracts, and I parked in my favorite corner.

The day started out well with a child taking my first tract of the day. I somewhat turn into a salesman mode and I call out to people who have unique shirts. A few guys had Jurassic Park shirts and I called them out as needing a dinosaur. I directed them to the dinosaur tracts under my hand and got a smile from each.

One longer encounter was with a couple who had visited the Ark Encounter once before. We talked about the ark being to the biblical dimensions and really affirming the historicity of the Bible, and that Noah had plenty of room for the animal kinds. It was a pleasant conversation and represented most of what the day was like.

Going home, the van was very hot after sitting in the parking lot. It doesn't cool off very well and stayed hot the full hour home. I was overheated and had a temp of 102.4° when I got out of my chair. Thankfully, cold washcloths and fans cooled me off quickly.

My next fair day was Thursday, August 17. It was a gorgeous day outside and traffic by the booth wasn't very busy. It was nearly 30 minutes before I gave out my first tract, but the challenge of the day would come later.

Just before 11:00, an older man with a green shirt approached and briefly looked at the television near me. I asked my common question, "Have you heard about the ark?" My quandary received a response that the ark was structurally impossible to build. For the next 20 minutes, at least, he and I went back and forth on several lines of topics.

Part of the challenge was defining a word. I asked if he was a good person, and the response was what does good mean? I gave the second dictionary definition of morally perfect, but his answer was that the meaning of words are always changing and I couldn't say what it really meant.

Even with his unwillingness to agree to much of anything, I got in twice that we need to repent of sins and turn to Jesus alone for forgiveness. Even though he denied Jesus' existence, I kept providing evidences from various sources. Thankfully, conversation was cordial the entire time and he said he respected my opinion.

One of the other volunteers talked with me later and said this is the third year this same person has visited the booth. The first year, he had been very vocal with inappropriate language, he was calmer last year, and came to me this time. At least he has had three year's of the gospel being given him and I pray he softens his heart and comes to Jesus for forgiveness while he has time.

This was the last year that Answers in Genesis will sponsor the booth. It has now moved to a local group that I have worked with, but will need to raise a lot of funds to keep going to the fair. I also pray this ministry will be able to continue.

After my shifts, I didn't have much time to explore the fairgrounds. With my caregiver's schedule and health, I had about one hour remaining each day. I didn't see much, but was still thankful for the opportunity. Hopefully I can return again, but I'll see what happens in the quad life.

So Much with So Little

Those who are self-employed talk frequently about times of feast or famine. In other words, times of plenty of work vs. times with little work. Technically, I work for mother's business, but it's basically the same thing. The last few months have been blessed with a lot of work, and falling behind.

I advertise my web development services very little. The only promoting I do is listing the business name at the bottom of my client's sites. It's a practice most web developers do and I just follow the trend. Formal advertising is also expensive, plus I'm not allowed to have much income. Therefore, I am thankful for what work I have been provided.

With all that said, this has been a busy summer for site work. A few of my existing clients have had their sites redesigned and I also gained a new client. The new client has an existing site with different functions and it took time to see who had access to everything. After I started building the new look, it went well. The largest part of the project is nearly complete and I hope the site will be live to the public by the end of August. Once this site is complete, I have at least one more that needs to be made completely from scratch.

For most people, the projects I'm working on would go quickly and be done in a few weeks. However, I continue to only sit for 60-90 minutes and then be flat for 1.5-2 hours. This is better than I used to do, but it is still a short time period. In addition to web work, I have also had sermon preparation, work on my autobiography, health maintenance, and several meetings with a disability advocacy group.

Friday was my first of two times at the Iowa State Fair (next week's topic). It was a hard day and I was glad to get home. However, when dad changed my wound dressing Saturday, my skin had a large tear in the area. Therefore, I really need to decrease my time sitting and stay flat even more. This has also been a recurring them this summer.

It can easily get frustrating with setbacks and not being able to do everything I would like. Unfortunately, it's part of the quad life and I know that God allows good times as well as testing. This week's fair trip may be even shorter than my first, but I still can serve God and speak to others.

Reading, Writing, and Watering

Once again, I had the house to myself this week. Unlike last time, I didn't have any appointments and could actually enjoy the at-home vacation. However, that didn't mean I wasn't busy with something.

For household chores, I needed to make sure to get the mail and water plants every day. It became a routine that my evening caregiver would start the shift by getting me in my chair. We then did our chores before biking and having supper. The schedule adjusted depending on day-time help, but it worked pretty well.

Biking continued to be odd early in the week. Tuesday morning, I was half asleep while my regular morning exercises were done. Working with my left leg, my caregiver and I heard a small pop, likely around the hip. We were concerned, but everything felt and moved fine. Later in the day, biking went much better than it had been. At the end of the week, after ten sessions in a row, my legs did very well with pedaling over seven minutes. We guessed my hip may have been slightly out of joint and caused the earlier reactions, but we don't know for certain.

Sermon Notes

My book that has been in progress for several years is very close to completion. I recently received it in PDF format with the internal layout complete. Since this is the final phase before printing, I was told to proof everything again and to have someone new read as well. Even with editing multiple times, both my publisher and I, several errors have come up. I don't know how they have been missed, but I have noted each one and what needs changed. I am about 25% of the way through and am finding fewer as I go. I'm hoping to have it out by early September, but I'm starting to doubt it will happen.

Also this week, I got to prepare for the sermon I gave this morning. It was a recycled message, but in a different environment from the previous presentation. My "notes" consisted of the Scripture I was reading and very little else. I may have had half a line available for text in a few spots without going to a third page of notes which would no longer fit on a music stand.

I was very thankful for the calm week while working on different projects. Having a busy quad life is fun, but it's also good to adjust and take on different responsibilities for a short time.

Calm Week with Questions

With all the trouble with my trach lately, it was nice to have a calmer week. However, I did visit my ENT on Thursday again. Since it was my third visit in three weeks, I wondered if I could get some sort of frequent visit perks. Unfortunately, no such options are available. He slightly adjusted the button to be further out, but I hope to not see him again for a few weeks.

Biking has been my main oddity this week. For the past several months, my legs have consistently pedaled for at least a few minutes without the motor's assistance. I have biked four times this week, and three of the sessions have had unusual reactions.

Twice, my left leg has been jerked with spasms much more than usual and I can see my foot even pushing and flexing much more than normal. However, it doesn't register as anything productive on the bike's electronics and at the end of the session, I only recorded 12 seconds of peddling on my own. One time, my legs decided to be energetic and, for a few seconds, peddled at 54 RPM instead of the set 30. For the entire 30 minute ride though, I only recorded a little over two minutes of not using the motor's assistance.

Since I can't feel my body, I can only monitor and guess at why things happen. During biking, I've also noticed other irregular reactions such as sweating. One thought I had was my pressure sore getting irritated and perhaps painful. The wound did get worse a month ago, but it doesn't look red or having extra problems. So far, it is only a mystery that I will need to keep investigating.

This coming week, my parents are again taking a week-long vacation. It's rare they go out in summer, especially twice in less than a month. However, it's just how my caregivers are available and they likely won't be able to go anywhere this fall as they have before. That means I will have the house to myself again while figuring out my body's oddities.

Such is the quad life with strange reactions. I will continue to learn and be thankful for what God has allowed me to do.

In, Out, and In Again, Trach Trials

The last week has had highs and lows, along with a couple in and outs. On July 13, I visited with my ENT as planned and anticipated going back to a trach button. After looking at some options, we decided to go back to using the same system I had in place for seven years, but had stopped in December. He carefully removed my trach, placed the button, made sure it was sitting correctly, and all was good.

Once again, it felt great to be free of trach ties, the rubbing in my throat, and improved speech quality. However, good things may not last very long. On Wednesday, July 19, my night nurse thought the button looked like it was falling in again. My day caregiver and I evaluated it Thursday, and thought it didn't look bad and it would be okay until my follow-up appointment in August. Friday morning it looked worse though, so I contacted my doctor about getting checked.

After a series of phone calls, it was determined I should meet him at the ER in Des Moines for when he finished scheduled surgeries. They wanted me to me the hour-long drive in 30 minutes, but I quick finished lunch, headed to the city, and arrived about 1:30. Once I was checked in, I was told to go back to the waiting room as all beds were full. Therefore, my caregiver and I stayed in one spot while people with various ailments, including major "upset" stomach, sat around us waiting.

Bored in the ER

Around 5:30, after dad came to relieve my caregiver who never got lunch, the doctor found me in the waiting area and wondered when I arrived. Apparently some paperwork problems never alerted him to my arrival and we had both been waiting for four hours. He evaluated my button again, took it in and out a couple times (without pain management), and determined the skin needed to seal up the area. My ENT made an improvised dressing, put the button in place again, and it felt fine.

Dad and I drove home, picked up supper, and we were at the kitchen table around 7:30. When I got out of the van, I noticed something didn't feel right and I had a hard time talking while eating. Upon investigation, dad discovered my entire trach button was out and only my shirt was holding it in place.

This started a few attempts to try to reinsert the button, but it would blow back out with another breath. Finally, dad removed the impromptu dressing, pushed harder, and everything was back in place. The first time dad had seen the button out was just a few hours earlier in the ER, but he did very well with reinserting it and me hardly able to help. However, I'm now back to where I was Friday morning. Also, the button does better when I sit, but my skin needs me to lay flat, so I battle which issue to address and to be upright or flat for longer periods.

I'm scheduled to preach this evening at a local church. I am thankful I start reviewing early, but this entire saga has my mind distracted. Living the quad life indeed has unexpected times, but I'm thankful for all the people God has put around me that can adapt quickly as needed.

2000 miles with more added

In July 2015, I first used an FES bike at Younkers Rehabilitation in Des Moines. It was a great experience that I was thankful I could enjoy. Now, eight years later, it's still an activity that keeps on giving.

I have written frequently about the benefits of biking. Late in 2022, two of my skin sores were officially declared healed. When I'm able to bike, my skin tends to do well. A month ago, I wasn't able to get on it for a couple weeks and my remaining sore became much worse.

Every Monday, I receive a summary of my previous week's bike sessions as well as a total of all sessions. The latest report showed I have officially pedaled more than 2000 miles in 609 sessions. According to Google maps, I could get from my home in Iowa and go to either Seattle or Los Angeles and still have miles left to go around the city. Alternatively, I could nearly make a trip to New York City, or Houston, TX and back. Averaging more than three miles per session, these would be very slow trips, but they at least happened.

When many people look at my legs, they may think they never move or do much of anything useful. However, they have done a fair amount of pedaling under their own power. In a 30-minute session, I've

seen them do anything from 0 seconds to more than 11 minutes without the bike's motor assisting. Looking at the graphs, it's a very bumpy roller coaster for how much they do (red line). It isn't at all close as to how other cyclists perform (blue line), but my legs have been lazy for several decades. Getting them to do anything productive is a reason to rejoice.

However much time they give, I'm thankful God has allowed me to use this technology. As I said initially, this is something that wasn't even dreamed about when I was injured. God has used this to increase my muscle tone, decrease muscle spasms, increase circulation, and help improve skin problems.

With my parents gone this week and having extra caregivers, I was able to bike three more times since the latest report. Adding more than nine miles to my total is fun, and I look forward to seeing how long God allows me to use this device and everything done through it.