Sunday, April 18, 2021

Crossroads

Most days, my home phone gets junk phone calls. The caller ID will come up as spam, name unavailable, or various other oddities. While biking Tuesday morning, a call came with an odd name on the ID. I expected a robot voice or someone that could barely speak English and had some scheme to get my personal information. To my surprise, it was an actual local person that wanted to speak to me.

It was someone from one of the golf courses in town offering an advertising spot for the year. He said it would be in front of business owners for a full year, many who don't know how to do websites, and potential customers. The rate I was offered wasn't as bad as I expected, but still nearly four months' worth of regular expenses. I thought briefly about taking the offer, but declined it.

This isn't the first year I have let the same advertising opportunity pass. Marketing my web development work sounds good, but it hasn't ever helped before. For the last several months, I have only had between 2.5-4 hours of paying work per month. More work would be great, but it's a catch-22.

My funding for nurses and medical care is partly through government assistance. I can only have very little income and my caregivers can't show helping me with anything job related. Therefore, I would like to earn more of my own income instead of just getting government assistance, but I can't without jeopardizing what I do receive.

Friday was my second school visit out of four this month, two more are later this week. It feels like I'm at a crossroads of staying with web development and trying to keep up with the industry, or going more into speaking and writing. I'm much more inclined to try the latter and see if I can stay busy with it. If this summer stays open to meetings, it may give the opportunity to test the waters.

Whatever comes, I can always strive to keep busy in the quad life and do what God allows. I have been asked some interesting questions at schools so far this month. Next week, I will see if I can decide which was the most unique.

Sunday, April 11, 2021

Banging my Head to Beat my Chest

Not having the ability to breathe independently presents a few challenges in life. Thankfully, God has provided tools to help take care of problems living in a fallen world. The item I talk about the most is my diaphragm pacemaker (DPS), but that's not the only item I use to keep my lungs in good shape.

Since I can't control my diaphragm, I can't cough on my own. I have learned how to manipulate my breathing to somewhat mimic a cough, but I still need help moving junk around in my lungs. Since the time of my injury, I have used a chest percussion treatment (CPT) twice, or more, every night. I have nicknamed the procedure my nightly thumping, or beating, and my nurses are happy to say it's time to beat Joel.

The CPT is simply a hand-held wand that vibrates and gets moved up and down my chest and back. Combined with turning from side-to-side, it helps keep any junk in my lungs lose and easier to suction out if needed. I can't feel it, but I'm told it feels good and I have woken up to nurses using it on sore shoulder or back muscles during the night.

For many years, the machine I used was called a Flimm Fighter. It worked well, but the cord between the machine's base and wand would break after years of getting wrapped up. After I gave my machine to be fixed once, it was replaced with a newer version that has all the mechanism in one piece, with a long power outlet to the wall.

The new version is smaller, but it's heavier for my nurses to hold and the wire between the wall and unit often resembles a pile of spaghetti. This is very prone to connections becoming lose and the machine not working. This has been the case for about the last six months with trading out my CPT with a loaner to get fixed. Mine gets returned, only for the problem to occur again a few weeks later. If it doesn't work, then the only option is to pound on my chest, and back, by hand. The cycle has become annoying and feels like I'm banging my head on a wall.

I started searching for an alternate solution, but few people use a CPT anymore and instead utilize a vest that does a similar treatment with air. However, it's not an option for me due to my DPS wires. In working with my new pulmonologist, he also doesn't know of any alternatives. Therefore, it looks like the cycle of equipment problems will continue. When I received my CPT back a few days ago after another round of maintenance, the solution offered was to hit the device on something and that should help it. When you're told to hit your medical equipment with a hammer to make it work, you know it has design flaws.

Such is the quad life sometimes. I'm thankful God has provided equipment that has helped more for 36 years. However, I think more frequently I should have pursued a career in engineering to help with medical devices. I will see if everything functions this week, but won't hold my breath (I can't anyway).

Sunday, April 4, 2021

A Tale of Two Easters

Today is Easter Sunday, the day when Christians celebrate our risen Savior. All who repent of their sins and trust in Him alone can be free from eternal punishment in hell. It is a significant day in the church and one not to miss.

A year ago, many churches held virtual Easter service with many pastors preaching to a camera and worshipers watching from home. The world was about a month into the global pandemic, waiting for the two weeks to flatten the curve. This year, most churches are meeting in person again, but still with many restrictions.

I just started going to worship in person a few weeks ago, but again didn't attend this weekend. One of dad's coworkers came to work after he was exposed to the Covid virus from his son. Dad doesn't work with the person directly, but still wants to be cautious. Therefore, we are trying as little interaction between he and I as possible. However, he still needs to help me a lot on weekends when I don't have day assistance. Part of the minimal contact also means not getting in my chair and being around people.

Jesus warned that those who are Christians and follow Him will receive persecution, just as He did. Many early Christians were martyred for their faith by Jews, Romans, and other rulers. The emperor Nero would have Christians covered in flammable liquid, tied to stakes, and burned alive to provide light at night. Some countries in the world today still have extreme persecution. I'm thankful that for this year, many believers were still allowed to gather and worship.

Later this week, I'm scheduled to visit my first grade school in over a year. I'm eager to work with kids again, but I am also wondering if I'll be allowed to go. As long as everyone remains free of symptoms though, all should be fine. I also mailed the two instructors a reminder early last week and I didn't hear back. Showing up at a school without an appointment wouldn't work very well.

Whatever happens the next few days, I'll go with whatever God has planned. Just as He plans were done 2000 years ago, they are today in the quad life.

Sunday, March 28, 2021

Wait too Long or Do too Much?

It was a busy week in the quad life, but not quite as busy as it could have been. However, what did happen continued to linger on for a time.

On Thursday and Friday, I had doctor's appointments scheduled in Des Moines. My primary day nurse, Sara, generally takes me to all my outings, whether for pleasure or health. Unfortunately, Sara called Wednesday night that she was ill and would not be able to come the next day. Dad has also been very busy at work and couldn't take the day off. Therefore, I called my doctor as soon as the office opened and rescheduled in a month.

Friday started out the same with Sara still unable to come due to illness. Dad was still busy, but was able to get the day off. Thankfully he, and mom, both went with me to the city to get my visit complete. While dad and I waited nearly an hour for my five-minute visit, I felt some junk start to come up in my lungs. It isn't anything too unusual, and I was able to do version of coughing to clear my airway.

Next on our excursion was to find, and eat, lunch. While we dined on our fast food, I kept feeling more stuff accumulate in my chest. As always, I had my portable suction machine with me, but it's hard to use in the tight spaces of the van. I continued to try to cough and move the junk around so I could breathe and hopefully wait until we got home to suction. After lunch, the three of us headed to our favorite fish store to restock my aquarium after most of the tank died.

Driving through the city streets, my lungs started to get more sore and I was having a harder time breathing. At this point on doctor days, Sara and I would have been heading home, but we weren't yet. Getting to the parking lot, I considered how dad could clear my lungs in the confines of the vehicle, but it didn't seem likely. I continued to try my breathing techniques to do what I could to wait.

Fish selection took some time, but the three of us eventually headed to our last stop, groceries. As dad navigated the streets, I had a few times I could hardly get any air. When he parked in the lot, I had him try to suction so I could get relief. It took some trial, but he figured out how to do the procedure. However, by this time, I had waited so long the junk was hard to get out of my airway and my lungs were very sore. Dad cleared out what he could, but it only provided a little relief.

Upon entering, the store had signs stating face masks required. I can't breathe with the covering on anyway, and the sore lungs made it even harder. I was very glad when our list was finished and I could exit the building to breathe easier. Finally, six hours after leaving home, we were home again.

With hardly going out for over a year, I'm not used to being gone for extended periods. Friday night into Saturday, my lungs remained sore and needed more suctioning than usual. By late Saturday, they were finally feeling back to normal, but I felt hot and tired after the experience.

As the world opens up, I need to be more careful in not overdoing. Also, I'll need to do better at not trying to hold off on needed assistance. I'm thankful for God's care through my parents and hope to continue heading out, but not too much.

Wednesday, March 24, 2021

Samson, Braun and no Brain?

For the last few days, my morning daily reading has been in Judges. The entire book recounts a repeating cycle for the nation of Israel. After the death of Joshua, and his generation, the people abandon God and follow the pagan practices of the surrounding nations. As a result, God follows through on His promises and gives Israel over to oppression and enslavement.

When this happens, Israel cries out to God for forgiveness and deliverance from their enemies. God responds by bringing up a leader, or judge, and restores the nation's freedom through that person. Israel then serves God during the lifetime of the judge, but then quickly falls away again after the leader's death. Then, the entire cycle starts over again with the people forgetting lessons from history.

One of the more well-known judges during this time period was Samson. The account of his service was all of yesterday's reading and part of today's. Before his birth, Samson was to be a Nazirite, set apart by God for a unique service. As a Nazirite, he needed to follow strict laws for behavior and how he lived his life. These rules included not cutting hair, going near a dead body, and much more as given by God through Moses.

While Samson was set apart as a Nazirite, he broke most of the rules during his life. Through strength God gave him, this judge killed many of the Philistines that were ruling over Israel. He also ate honey from the corpse of a lion and lusted after women. As part of the last one, Samson had more opportunity to confront the Philistines, until he met his final wife, Delilah.

Delilah was given over to greed for money and agreed to learn the secret of Samson's strength. He gave her several false answers, all of which Delilah did to him. Samson didn't learn from any of these lessons though and finally gave the answer of his long hair. After a barber cut off the judge's hair, his strength left him and he was captured by the Philistines, blinded, and put in forced labor. However, the Philistines also didn't pay attention and allowed Samson's hair to grow back. At his last act, Samson was strengthened by God one more time to take down idol worship and many of the Philistine followers.

One of the main points of this book is to teach the Bible, God's law, to younger generations. Remembering what God has done, and will do, is a key to fearing Him (which is the beginning of wisdom) and living as God requires. It also demonstrates that God uses people He chooses, no matter how flawed, to serve His purposes.

Therefore, be sure to study God's Word daily and teach others as well. Learn from history, and if you keep giving into temptation, do anything to get away from it before it blinds you and costs your life.

Sunday, March 21, 2021

Spring Fling

Today marks the first official day of spring in the northern hemisphere. It is when I stop hibernating at home and venture out into the world again. Last year, winter hibernation never really ended, but I'm ready to roll.

After more than a year off from going to church in person, my parents and I made the adventure today. We are out of the Sunday morning routine, but will get back in the habit easily enough.

My typical first visits after winter are also scheduled for this week, doctor's appointments. I often hear people comment they know it's spring when road construction starts. For me, it's medical visits that were missed in the winter. My very first appointment will be with my dermatologist to check on my pressure sores.

Depending on which nurse I ask, and what day, the holes in my skin have either improved, stayed the same, or become slightly worse. My doctor doesn't take measurements, but relies on what the supervisor from my nursing agency says. Her last visit didn't show much progress, but that is typical for my years of dealing with sores.

While I'm looking forward to getting out, not everything is opening up. In early March, applications went out for CHAMP Camp counselors, and campers. It had many restrictions and I wasn't planning to go again this year. A week later, the campgrounds CHAMP Camp uses decided to cancel all camps this summer. Therefore, applications were no longer needed and 2021 will be another virtual year. Without traveling or long days in my chair required, I did apply to be a virtual counselor. I'm not sure their will be much I can assist with, but I'll see if I'm accepted.

In a few weeks, I'm scheduled to visit with my first grade schools in over a year. I'm looking forward to it and once again being Mr. Joel for short periods. Teaching children how to use God's gifts in any form is a fun part of the quad life I have missed.

I will see what the outside world is like again and report back next week!

Sunday, March 14, 2021

Took a Year Off

The first few days last week felt like spring with highs in the 70's. With the temporary warming trend I took the opportunity to do something I haven't in over a year, run my own errands.

Living the quad life, I'm dependent on others to help me with pretty well everything. I can blink without assistance as well as chew and swallow, but only if someone gives something to eat. Therefore, what I can do that resembles anything of independence, I try to do as much as possible. One of those items is being responsible for the supplies my nurses and I use.

Usually a couple times a month, I would get a list together and go to Walmart, or elsewhere, and get whatever I needed. Purchasing vitamins, protein bars, toilet paper, and other items isn't anything too extraordinary. However, it's a little part of independence I could do without relying on anyone other than my caregiver and I. It wasn't uncommon to get home from the store and immediately find something that was almost out and I would have my parents get it if they were heading out.

Then, like everyone else, March of 2020 hit with a pandemic and everything changed. With all the regulations and trying to avoid people, I gave my list to my parents. That has now been the case for at least a year, until this week.

Getting out and doing my normal routine felt good again. It was different seeing people at check out behind shields and marks all over the floor indicating six feet separation. I didn't see many other people in the store anyway, so it was a simple task to complete.

Hopefully, this won't be the only outing for this year. With so many uncertainties and rapid changes, we can never be sure what's coming. No matter what, I'll continue to trust God in all ways and do as He allows.