Weekend of Freedom and Celebration

Yesterday, America celebrated 250 years of becoming an independent country. While no nation has truly been Christian, the US has come the closest.

The founding fathers wrote in the Declaration of Independence that all men are created equal and are endowed by their Creator with certain unalienable rights. From the country's foundation, God was acknowledged and the reason for our rights. Later on the 1st Amendment guaranteed all citizens the right to practice their faith and not have government force a certain belief.

At the time, the Catholic church was dominant in Europe and held strong influence over nations and local jurisdictions. As the protestant movement crew, Catholic leaders made it so that anyone who didn't follow Catholicism could be arrested, and most were killed for their faith. In this environment, being able to worship freely was indeed a welcome idea.

Today, the so called separation of church and state is taken to extremes. When prayer is allowed at public schools, or the Ten Commandments posted, it is strongly protested. At the same time, humanism is freely taught by saying evolution is the reason everything exists and God has no place in science.

This morning, I preached along a patriotic line using Romans 13:1-7. All leaders, whether good or bad, have been appointed by God. When they make rules that don't go against God's commands, then we are to obey them as commanded. The example I used was obeying the speed limit. Just as telling one lie makes you a liar, or one murder a murderer, so one mile-per-hour over breaks the law. Even if police won't pick you up unless you're much faster, it still breaks the command.

Unfortunately, as America becomes more secular and turns away from her roots and Christianity, not all laws and regulations are biblical. I recently heard of a 5th grade boy who was required to read a book to a Kindergartner about being trans. This went against the boy's belief as a Christian and he protested on reading it. Unfortunately, it is now up to courts deciding the student's freedom of speech.

I am thankful for the 250 years God has blessed this country. I continue to pray that leaders will truly come to Him and live as God commands. Many today twist Scripture to their own desires and not what it actually means.

Have a great remaining time of celebration and may we look to God's law as our basis for government and living. 

Progress Made in Answers

Sometimes, I have to wait long periods for insurance approvals and then see what treatment I will be allowed to use. This week was not one of those times and progress was made on getting questions answered, but not sure on full solutions.

Tuesday was the first visit of the week. Jeff, a technician for my diaphragm pacemaker, flew in to Des Moines and arrived in my bedroom at noon, just as planned. I reiterated what I had experienced and he was soon off to work on my DPS patch.

While Jeff works on the wires, the system doesn't work and I have to breath on my own. I had anticipated a lengthy time of breathing exercise, but just two three-minute periods was all he needed. The old silicon that had become like glue was removed, wires inspected, and new silicon added for protection. He said it usually happens when the patch gets wet. I couldn't think of a time it had, but noted to be more aware of it.

The repair maybe took 10 minutes total. I have seen Jeff a couple times in my 15+ years of using the DPS and we always got along well. After another 30 minutes of getting caught up, he headed back to the airport to catch his flight home. I don't know how his company does these maintenance visits so easily, but I'm very appreciative of them.

Thursday evening, I emailed my wheelchair tech to see if I could get scheduled for a pressure mapping of my chair. After a few messages Friday morning, he was in my room that afternoon with the needed equipment. My day caregiver had called off sick, but thankfully dad was available to move me around.

First, he noticed my chair's seat cushion was low on air, even though it had been pumped up a few weeks ago. Submerging the cushion in my parent's bathtub confirmed no air leaks, so it was dried off and further inflated. After I was sat in my chair, the cushion was partially deflated to its optimal thickness. Testing with the mapping system showed everything looking good.

Unlike last November, I also asked to test my bed while sitting. It took a few tries to get the system properly placed, but it did reveal increased pressure in the area I'm having trouble. The colors didn't look bad to me, but he recommended sitting in bed for 30 minutes at a time, 45 at the most. My usual schedule is 1-1.5 hours of sitting and then flat for the same period. That already makes it difficult to get work done, cutting time down further will be very hard to do. I could possibly do more while in my chair, but my computer and everything else isn't setup for it.

As of this writing, I haven't changed my schedule much, but have shortened upright time a little. I'm scheduled to preach the next two weeks and will have end/beginning of the month items to do for web work. As I always say, living the quad life has challenges. No matter what, I will rely on God's guidance and strength to get through.

What's a Schedule?

In Proverbs, we read that man makes many plans, but it is the Lord's purpose that prevails. This week has been one of change and adjustment.

Tuesday, Sara, my day-time caregiver, thought the new skin area was looking worse. Therefore, I called my dermatologist to see if I could get in any earlier than my late July appointment. A few hours later, I had an appointment for Thursday that someone had cancelled. This was good news, but required rescheduling my hair cut. That is actually a challenging task, but was done.

My doctor wasn't too concerned and said it currently looks superficial. However, he doubled a steroid I've been taking to encourage protein absorption. He also ordered a new treatment to the area, but insurance is now debating if they will cover it or not. I'm thankful to be making more effort in this area, but that's not the only problem.

Every few weeks, my caregivers change a patch on the right side of my chest that connects to my diaphragm pacemaker. In the first few years I had it, I had trouble with wires getting damaged and not working. The solution at that time was to put some silicone gel to restore connection. That worked, but other improvements made this need obsolete and everything has been working well for at least a decade.

For about a month, when changing the patch, one of my caregivers said the silicone was getting sticky and adhering to the dressing over it. I consulted with my other caregivers and an expert nurse on the system, and they weren't concerned. Early this week, I had a different nurse change the patch, and he had the same issue, but maybe a little worse. Wednesday morning, I emailed a different technician on the DPS than I did previously to check his thoughts. He now has flight plans and should arrive Tuesday to work on my patch. What one person thought was fine, another says it needs immediate repair.

Things I had planned to do this week didn't happen and what I hadn't expected to do did happen. Late Tuesday morning, I spoke to a class of Occupational Therapy Assistants. One of their questions was if I could work a full-time job. I answered that I did a couple full-time temp jobs after college, but that was 23 years ago. At this point in the quad life, especially with my caregiver schedule, it would not be a possibility. It seems like I spend an increasing amount of time just trying to maintain my health. 

With all these unexpected twists, I'm especially thankful for my dad. He continues to make sure I have a working vehicle I can use and works at least full-time so I can keep medical insurance. As my physical needs change, I also become more dependent on his care when I don't have caregivers.

God has blessed me with great parents that do so much for me. I never know how long we will be able to continue, but am thankful for all the years so far and look forward to another week to come. 

Mounting Pressure or Something Else?

After preaching last week Sunday, I looked forward to a week at home where I could get caught up on work and prepare to preach again today. Monday, I did my regular routine of checking my skin for any problems. Both times, my front side looked fine as far as I could see. I don't often mess with flipping to my side and setup mirrors to see my posterior and often rely on my caregiver's eyes.

Tuesday morning, Sara my caregiver was doing my morning leg stretches and saw a bandage that normally doesn't exist. Further investigating discovered a new open area under my upper right leg that my night nurse must have seen.

It wasn't long ago that I saw my dermatologist about the sore on my left leg that I have had for years. He was elated at how good it looked and to keep up the good work. Since I saw him in late April, I haven't changed any of my routine and did not expect a new area to open.

Therefore, I made sure to bike all three times I could this week. Sara noticed my chair's seat cushion was a little spongy, so she pumped more air into it. I also slightly decreased my evening upright time in favor of laying flat more. Sara said it was looking better on Friday than it did Tuesday, but still existed.

With 41 years of living the quad life, this type of development isn't new. Even with that, it's still frustrating when it happens.

Logging in to write this week's entry, I was reminded of the treatment I had on the same leg just a little over a week ago. I haven't had trouble with treatment before, but the last time was three years ago. It's possible the combination of a few factors caused the issue, but I won't know.

Other than today's preaching, I only have one outing scheduled this week. I'll wait and see if I have to drastically limit activities or if the current changes help make progress.

Even with decreasing my time upright, I was thankful to be able to either complete or make progress on a few web projects. One morning, just before leaving my room to bike, I got a call from one of my clients that they were having email trouble. Of course I prefer everything to stay working, but the occasional need for help is somewhat fun. I get to research and find solutions then see if it fixes the problem. This time, one minor setting change fixed everything and they were back to normal operations again.

In some respects, when things are going well, we may forget to look to God and give thanks for all we have. When a problem, like a new sore, arises, then we call on God more quickly and seek His help in everything. You never know what a week may bring, but I can be certain that nothing is out of God's control. 

Retirement

For most adults, one eve they look forward to is retirement. While working at a job for decades, many people put money away for this milestone and look forward to the freedom it offers. Some professions allow for early retirement in their mid 50's, but not many.

After more than five decades of working various jobs, my mother was finally able to officially retire. It has taken a lot of planning and preparation, but I'm thankful she could reach this achievement. I wish my dad could do the same, but I still need medical insurance from his employer. Various ideas have been proposed, but nothing has come as a perfect solution.

While I'm thankful to see my parents slow down, it's also a hard dose of reality. One of the activities retirees do is help with grandchildren. It may be baby sitting younger kids, attending sporting events, or whatever the family does for fun. Grand children are a regular topic at church and with friends, but it is a blessing my parents, nor I, have been given.

With all the funding fumbles this year, we also have to be careful how my parent's activities may affect my benefits. Most people don't know, or care, about Iowa laws. If/when my mother takes retirement, it changes my government benefits as well and could eliminate some of my caregiver funding.

Unfortunately, living the quad life ends up discovering things that few people know exist. It is also rare that a child injured as young as I was still needs care over 40 years later. More of us are living longer and are realizing problems with the funding systems, but no easy solutions are available. 

This week, I have been following a friend's situation and potential new rules in Ohio. Alex is a fellow high-injury level quadriplegic and is 21 years post injury. His mom, Beth, is basically his only caregiver and as a result, can't have a regular job outside the home. Ohio proposed cutting off payment for family caregivers, such as parents or close relatives taking care of a person's needs. This would stop Beth's only form of income and leave them with absolutely nowhere to go. Thankfully, it appears that this ruling may be scrapped, but it still has potential.

These are times where we must remember God is in control. I don't know what the future holds for my parents, or multitudes of families in Ohio. However, God has said He knows our needs and to bring everything to Him in prayer. It can be hard to be patient and not grow anxious, but God has demonstrated many times that He is in control.

 This morning, I preached at a small church in eastern Iowa. A few days ago, they contacted me that next week was also in need of help and nobody else is available. Therefore, I'm scheduled to preach two weeks in a row. God has put me in a place where I can currently do this, so I am happy to help. It means another busy week of sermon prep, but I'm getting used to it. I will see what else comes my way as June marches on.

Where to Begin?

Unfortunately, this week started with more health issues. Monday morning, my caregiver found a rash on my leg. By Wednesday, I had a cream to treat it, but I was still tired and now running a low grade fever. The leg problem has popped up before as an indicator to infection. My suspicion was confirmed Friday afternoon with a diagnosis of a UTI and I started taking an antibiotic.

Due to the leg rash, I did not get up to bike or even sit in the sun despite nice weather. My caregiver and I didn't want to add further irritation and possibly make things worse. Therefore, I stayed in bed all week, except for one activity.

I have posted before about feeling disconnected from church at times. The best way to get to know others better is through more one-on-one conversations, especially in smaller gatherings. Most groups only meet during the school year though. It would be odd to join for the first month or two, go into winter hibernation, and then maybe return for the final meeting or two. I have done it, but it isn't a great situation.

My church bulletin advertised a men's group meeting this summer in the evening twice a month. I thought it may be good to at least see what it was like, so my only outing this week (other than the hospital lab) was Thursday night with dad at church.

He and I reviewed the Scripture passage and then joined 12 other guys. Most of them were very familiar faces from church and I actually knew the names of several. The Bible study portion took the majority of the time, but we had a concluding time of sharing prayer requests or needs.

As I listened and added requests to my mental check list, I debated what to say, if anything. One of the problems of living the quad life is the isolation and unfamiliarity with frequent concerns. While I consider several of the men friends from church, I don't know much beyond general information of each, nor they me.

I would have liked to add a prayer request about the recent issue of getting hours approved. In order for it to start making sense, it would require an explanation that could get lengthy. As others finished concerns, I also noticed time was getting closer for my night nurse to come. Along with my caregiver needs, I know others in the quad life with great struggles and further need of God's intervention.

In the end, I sat in silence and just listened as a spectator learning the group's routine. Afterword, I did update our Pastor as he is somewhat familiar with what has been going on. Overall, everything went well and I made it back to bed just one-minute before my night caregiver arrived. I don't know if dad and I will be regular attendees, but it was at least one evening out with a week of not doing well.

Next Sunday, I'm scheduled to preach at a church I haven't visited in nearly five years. I pray the medication helps to improve my overall health, but also doesn't cause further problems. Whatever happens, I look to God for His direction and strength.

Down Days

Iowa weather continues to be a roller coaster of variety. A week ago today, it was warm and pleasant weather. However, after more rain, the temps dropped again for the rest of the week. Tuesday through Friday had highs only in the mid to low 60's and lows in the 40's.

On Thursday, I had my monthly hair cut at a place I've been going for years. I ran a few errands, then arrived more than 15 minutes early to my appointment, which is highly unusual. My barber was with another client, so my caregiver and I waited up front.

Just above where I was sitting, a ceiling fan was running on a low speed. Even though I was wearing jeans and a long-sleeve shirt, the cold breeze got to me. I had my caregiver grab my coat, but it didn't help much. By the time my barber was ready, I felt like an ice cube and was absolutely miserable.

Thankfully, I left about 45 minutes after arriving and welcomed the slightly warmer outside air. Even the cloudy day with a temp around 60° felt warmer than inside. Unfortunately, the time under the fan had taken it's toll and even after extended time under blankets at home, my temp didn't even rebound up to 97°. 

Before the outing, I hadn't been feeling the greatest. However, it's getting more difficult to schedule hair appointments and I didn't want to cancel at the last minute. 

Friday was also spent warming and just not feeling great. Saturday was a little better, but still very tired and not feeling right. At church this morning, our pastor had a great message, at least what I heard. I had several times I found myself with eyes closed and head down when few others did! If I arrive early again and can only be under a fan, I think my caregiver and I will pop outside and wait by a nearby bench.

This weekend is also the time to reflect on the ultimate price some have paid to keep America's freedoms. As the country celebrates its 250th year, we cannot forget that freedom is never free. In some areas of the world, a simple thing like getting your hair cut isn't allowed. Quadriplegics, and other person's with disabilities, are often secluded from society in government run health facilities. They are given the absolute basic of care to maybe survive a few years, if even that long.

Thank you to families who remember their loved one who never came home. I greatly appreciate your sacrifices and will not forget them this week, or any other.