Sunday, March 17, 2019

Sick Week

The flu has been going around southern Iowa with quite a few people ill. On March 4, my primary night nurse left early due to not feeling well and was gone for a week. March 8 had the same with my main day nurse leaving early and has been gone all week. Despite having the flu shot, I started having trouble Sunday.

It was finally decent weather, so I was able to go to church. However, it was too cold to go barefoot so as I sat in church, my arms and legs spasmed frequently. Halfway through the service, I could feel junk in my lungs that needed suctioned out. It's rather disruptive for me to leave during the message though, so I made it wait. The minister seemed to go on for quite a while, but I was thankful to get home. By then though, my lungs were already hurting.

Suctioning increased substantially the next few days along with temperature fluctuations, sore lungs, and congested nose. This week has made me both thankful and regretful to be using the diaphragm pacemaker as well. As stiff as my lungs have been, I know from experience that my regular ventilator would have had a difficult time giving me air. That quickly causes issues, but thankfully the pacemaker works differently and I still breathe. However, my clogged sinuses make pulling air in very hard.

Trying to breathe through what feels like glue in my nose has made me wonder about the vent again, but that would be more problems with my trach button. Thankfully, if I have a spasm, it sometimes helps partially clear my nose (I don't why, but it does). I've had my nurses and parents help move me more to cause spasms so I can hopefully breathe better.

My doctor assigned an antibiotic Wednesday along with Tylenol, Mucinex-D, and my regular meds. Friday prompted a change since my stomach started issues, but they have decreased. The pharmacy flowing through my body seems to be helping, but I'm still going from feeling okay one minute to lousy a short time later.

I'm thankful for the gifts God has given in the forms of medications and technology like the pacemaker. I look forward to returning to the regular quad life as well as sleep this week.

Sunday, March 10, 2019

Urgent Time

I've heard some people say they get a feeling something is about to happen. However, I notice the thought is often expressed after an event occurs. For probably about a year I keep feeling a large change is coming, but can't really give a reason why.

In several places in Scripture, we're reminded that time is short and that this life is like a blink of an eye. I've been having more of an urgency to get things complete and the last few weeks have been doing work on my book not only while sitting, but also when laying flat. It could be why my eyes have been sore some nights, but I'll ignore that for now.

I like the progress I'm making and going through old memories. When I get to a point that I say it's complete, I'm not sure what to do from there. Thoughts of publishing it have gone through my mind, but I don't see why anyone would be very interested in it. I could see going through the effort and expense of the publishing process, then maybe selling ten copies. However, the one person that has read all of it so far says he thinks people would be interested. I think it's rather boring, but I lived it.

Aiden and I tour camp
Through social media, I've connected with a few families that have kids with high level spinal cord injuries like myself. One of them, Aiden, lives in Indiana and I got to meet him in person in 2015. On Wednesday, Aiden was at school and suddenly went into cardiac arrest. After two hours of CPR and being air lifted to the hospital, his parents have been waiting for answers and test results. As of this writing, he did open his eyes and interact with his mom, but is having multiple complications and uncertain days ahead.

I also read this week about another country in Europe expanding euthanasia laws to now include children as young as six. With the way America has been going recently, I wonder when, not if, it will become part of regular "healthcare" in this country. Thankfully, I got my regular hours restored in January through another policy exception in state funding. It keeps getting closer that it soon will be more expensive to keep me home than in a facility.

After 34 years, I know God has given me an exceptional long quad life that few have experienced. As most people, I would like to leave something for people to remember me and possibly be helped by the life I've been given. When my time on this earth is complete, I do not know, but want to use what I can.

This week, I'm scheduled to start getting back out in the world again. With my two main caregivers sick, I'll wait to see what actually happens. Until then, enjoy the present of today and hope to be back for the next installment.

Sunday, March 3, 2019

Wrong Direction

Unless you don't live in the United States, it has been hard to watch what is happening in the political arena. Newly elected politicians started making changes early in January and it hasn't slowed down. When New York state passed a law allowing abortion up until birth, it was all over the news with applause and celebrated as a victory. Other states have looked at similar legislation, but I have yet to hear any that have passed.

Not only are babies allowed to be killed up to birth, but also afterword as well. If a child survives an abortion procedure and is born alive, the medical persons on staff don't have to provide life saving treatment. It is very hard to believe such situations exist in what is supposed to be an advanced, civilized nation.

This week, a bill was brought to vote that would protect these babies and require medical treatment given to them. To me, it seems obvious to have such a law, but 44 senators voted against it, therefore defeating the law. The culture of death has grown rapidly, and I have seen groups working to stop the trend.

Almost daily, I see emails or online posts asking for signatures to support something to decrease or end abortion. These efforts are good and I would love to see children protected from the moment of conception, but they miss the point. Changing laws are good, but they can easily be reversed again by the next generation, or earlier.

Where change is needed is in hearts and minds and individuals saying why all life is precious. Yes, 44 people voted that it's okay to let a baby born alive die, but those people were voted in by many more individuals. Christians need to be active in hearts as well as policies.

I'm praying to get out more this summer and to keep writing about this quad life I've been given. I don't know that I want to guess on what laws may be proposed by then, but I'll look to the lawgiver who is in control of everything.

Sunday, February 24, 2019

Time to Spend

With my last post, I was preparing to preach for my first time this year despite not feeling the best. Fortunately, or unfortunately, they canceled the service about an hour after writing. So I now have a new sermon prepared and ready to go if another church contacts me.

Tuesday was also my last day for the antibiotic and so far at least, everything appears to be back to normal. I get nervous about stomach problems now any time I'm on extra medication, but thankfully I didn't have any issues. I don't really care for cranberry juice, but will start trying to drink it to help decrease further infections.

With no more sermon preparation, I started back on writing my autobiography again. It sounds boring to me, I lived it, but John has read it and says to continue on. I am now up to my senior year of high school. A lot was going on in that time of life with school every day, doing regular senior activities, and working on a plan for college. During that year I also worked for a local newspaper and this week I looked at some of my old articles that grandma kept.

Looking at the time two decades ago of how active I was and today barely getting two hours a day of being able to do anything. Normally in the first week of January, I look up local colleges and email professors of medical related classes to see if I can come speak. It's very rare I get a response, but I do attempt. This year, I haven't mailed any.

I did go ahead and apply for CHAMP Camp this year even though I hadn't planned on it. A family I have been working with for a few years said they were going to finally send their son this year. Therefore, I signed up so I could be there to help him through his first year. Now it looks like he won't be going though. The deadline for applications hasn't even come yet and I'm starting to regret having applied. I don't want all these months, well years, of laying flat so much to be completely undone in just one week.

Every morning, I get an email with quotes from early Christian reformers. Saturday's email was on spending time wisely and quoted several verses. One of them Ephesians 5:16, "Be very careful then how you live...making the best use of the time." It was a good reminder and one I've said on this blog before.

I don't know what time I have left in the quad life, but I do know it's getting shorter by the day, and minute. I praying this week to use it more for whatever God has planned and not wish for what has passed.

Sunday, February 17, 2019

Infectious Week, Again

This winter has been a challenging one. The cold and snow have made it hard to get out and several people around me have been dealing with coughs and stuffy noses. Unless their income is from snow removal, I don't know of many people that aren't looking forward to spring.

A few weeks ago, I was treated for a bladder infection. Unfortunately, the antibiotic my doctor prescribed interacted with another one of my meds, so I was to only take half a pill a day. After I finished the dose, I wasn't real sure it had worked. I gave it another week and sent in another test. On Tuesday, I received the call I expected. I have Staph infection and need to do a week of antibiotics, but a full pill twice a day this round.

I have been working with pressure sores for over 11 years now. Thankfully during all this time, they have not had problems with getting infected. Just before Tuesday's phone call, my day nurse was doing my wound dressings and one of them had a lot of junk in it, likely infection. Thankfully, it appears to have cleared up. On Thursday, my nursing agency's case manager came for her regular 60-day visit.

She agreed everything looked okay and was happy to find that two of the three had again shrunk since her last visit. However, I was sitting in bed with my usual attire of t-shirt and shorts with a temp of 100.6. The same occurred again yesterday with 100.7 I guess I could say I was a hot guy, but that just doesn't sound right.

Before all the snow started, I agreed to preach at a church in town tonight. I've been preparing the last few weeks, but also watched the forecast for snow. I woke up to snow falling again and nearly every church in town canceling, except where I'm preaching. This is why I don't schedule talks in the winter, in order to avoid cold and snow, but thought I would give it a chance. My only conclusion is that I am meant to give tonight's message.

I'm thankful that God has provided ways to treat infections as we live in this fallen world. Three shifts were missed this past week due to weather and illness. These times in the quad life get challenging, but I look forward to better days to come and seeing what is in store.

Sunday, February 10, 2019

Valentine's Day

Some weeks, I struggle what on what to write in this blog. Today was one of them, until I remembered Valentine's Day is coming later this week.

February 14 is the day set aside especially to show love to that special someone. That someone could be a spouse, parent, child, and often all of the above. Flower shops and candy companies become busy for the day and greeting cards fly off the shelves.

I've heard some people say that holidays are inventions by greeting card companies in order to increase sales and love should be observed daily. According to my Google search, the celebration started in the United States around 1847. Hallmark began over 60 years later in 1910. Therefore, the main greeting card company does benefit from February 14, I wouldn't say they started it.

It is correct though that someone's care and love for another should be expressed more than one day a year, and daily. I think several wives especially would be expressing another emotion if husbands didn't regularly say "I love you," at the very least.

While human love is a good feeling to have, I think even more of God's love for us. The familiar John 3:16 says "For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life." The Bible speaks of love in multiple places, such as that while we were still sinners, Christ died for us. (Romans 5:8)

God is love, but a loving God must also see that sin is punished. Continuing on from John 3:16, we read that those who do not believe are condemned. It is a two-way relationship, "If you love me, you will keep my commandments." (John 14:15) Even though we as sinful mankind don't keep up our end as we should, God does not depart from us.

As you go through this week, let us remember our love for those around us, but also that which God shows us. I'm thankful for loving parents and caregivers He has given me, but even more for His free gift of salvation.

Sunday, February 3, 2019

Sound Check

With only sitting two to three times a day for 45 minutes at a time, it can be challenging to get much accomplished. Some days, with web work, writing, and sermon preparation, I don't know where to begin. Therefore, I added another project. Some might say I'm crazy, but I would agree.

When I go to schools, be it college or elementary, I often use a video or two to help explain something. Most of my videos are getting older though and could use an update. I received a hand-me-down camera for Christmas that takes good pictures, but also does video. I've now used it to do a few episodes of the quad life and I have a few more in mind.

My computer has a program called iMovie that does good video production, but this venture has been my first need to use it. Adding pictures and short clips has been fun to learn and I can do some while I'm flat. The drawback is that I actually have to listen to myself to know where to include different items.

Since changing to the diaphragm pacemaker system in 2010, my primary regret with it has been speech quality. I wasn't used to having to wait for air and could talk clearly when on the vent, pausing when appropriate. With the DPS, I have to stop every four seconds to take a breath. To my thinking, I try to hide my breaks fairly well in regular speech. Watching these videos says otherwise.

Another thing I noticed is how much my shoulders move when I'm talking. I know it's my body trying to take deeper breaths to be able to speak louder. It was something I was aware needed work, but again more than I thought.

I know I'm likely being more particular about it than most people, but it has made me more aware of it. It's part of the quad life that can't be changed, but I can be more understanding when not understood.

Even with faltering voice, I'm thankful I can serve God and be an active member of society. This new venture has shown more areas I need to work on and hopefully become more clear for everyone.

Sunday, January 27, 2019

Snow and Cold

There is saying that if you don't like the weather in Iowa, just wait a few minutes and it will change. I'm waiting, but I don't like the change that's predicted.

We were very fortunate the first weekend of 2019 with very warm temps. Since then, it has turned snowy and very cold. So far this month, six of my nursing shifts have been missed with all but one due to weather. This week doesn't look to have much snow, but extreme cold. I think I will be rescheduling a hair cut I'm supposed to have this week for a hopefully warmer day.

It's no secret I don't like cold weather and winter. I try to base my thinking according to the Bible and have concluded that winter, as we know it, is part of the curse of sin. I'll try to explain my reasoning for this thought.

When God finished creation week, He called everything very good. The crown of creation was mankind, made in God's image, man and woman. Part of their rules were to work and keep the garden of Eden. The first couple, and all animals, were to eat what the earth produced. Lastly, before the corruption of sin, Adam and Eve did not wear clothing.

This shows several things when we stop and think. In order to have food all year long for every creature on earth, plants would have needed to be growing and producing all year. That also allows for Adam and Eve to fulfill their job of working the soil. Finally, with going around naked, the first couple didn't need protection from the harsh elements of a cold winter.

On day four of creation week, God said the stars were set in place to mark seasons. Therefore, the four seasons would have been set in place from the beginning. However, based on the above thinking, it likely would have been much more mild, maybe something like southern Florida experiences.

Unfortunately, the first couple sinned against God and brought the curse on all creation. The flood during Noah's time would have drastically changed the earth's climate with an ice age to follow. As I look out my window at a snow covered landscape, it reminds of this history.

God still uses the world in it's current state to show His love. In Isaiah 7:18, and other passages, God promises our sin stained life will be made white as snow. I look forward to that time of after the quad life and the new creation,

Sunday, January 20, 2019

What is Normal?

I'm happy to report that my night hours are back to normal, mainly. Insurance denied increasing the daily limit for nursing services. However, state insurance is likely to approve an extension retro-actively to January 1. Therefore, my nursing agency is allowing regular hours to resume, as long as everything is approved.

It is great to be back to the normal routine, but it also makes me wonder. What is normal? For many people, breathing, walking, and moving independently is normal. Living the quad life, all of those activities would be very abnormal. Therefore, normal would be something an individual defines for her or himself for some circumstances.

For me, wearing shorts outside in January in Iowa isn't normal. When conditions are just right, the regular routine can be adjusted. For others I know, this type of dress code is common all year long, no matter weather conditions. General society may think it's strange, but that also depends on the population.

In the U.S., it is normal to have things such as fast-food restaurants easily available and a common part of some family's meal plans. In other countries, they would be an extreme luxury and only found in select locations. Just within the United States, different regions have various accents and daily routines that are normal for that area, but not for others.

In order to define what is normal, it appears that you first look at the country a person is in, then what region, and finally for the individual. Therefore, I don't believe one universal definition can be applied to everyone. We need to look to an ultimate source for a standard.

As a Christian, my standard that I use is God, through His word. Looking at the moral law, the ten commandments, gives a foundation on how to live and what is good, or not. This year has shown already that everything in life can and will change, but the Bible is the only constant. Hopefully this week ahead will go according to my regular routine, but I know where to look if it goes astray.

Sunday, January 13, 2019

More means Less, and Equal

When your life greatly depends on funding from medical insurance, it can get complicated. One phone call this week set off a chain of events that's still unfolding.

On Tuesday, the head of the nursing department I use for night coverage called. On July 1, 2018, my insurance provider increased the amount they paid per hour for nursing services. However, they also have a daily limit on what will be covered, and that was not increased. Therefore, the change meant that only 7.5 hours were covered instead of the nine I get every night.

I wasn't aware of this until the call. The agency had just been covering the extra 90 minutes during 2018, but were no longer willing to do so. Therefore, the company would be making the same amount on providing care, but by covering fewer hours. The fun doesn't end there though.

Medicaid allows one hour of nursing visits per day, five days a week. I don't use this benefit, so that would allow my night hours to return to 8.5 per night and the agency is willing to cover the final 30 minutes, making my usual nine hours covered five nights a week. That leaves two nights a week that would be short the regular time.

At the end of December, I received a letter from my insurance provider stating my nursing services would be covered January 1, 2019 through July 30, 2019 up to 10 hours a day for a certain amount. If changes were needed, then the agency should contact insurance for adjustments. After getting the letter scanned, I mailed it to the supervisor and pointed out the line about changes. His response was that he tried with another family and it didn't make any progress.

Wednesday, I called my insurance provider's case manager and let her know what was going on. I provided more details Thursday as I knew more and as of Friday, someone else is reviewing the changes needed and will hopefully get back to me early this week.

My parents and I chose Saturday and Sunday to be short on hours, so this has been the first weekend with decreased coverage. I'm thankful I have loving parents that are willing and able to do the extra work and go with changes. We are hopeful it's only temporary, but won't know for a while.

Living the quad life is rarely boring. I somewhat look forward to what may come this week, but I know God is in control whatever may come.

Sunday, January 6, 2019

In-House Maintenance

When you own something, it will need maintenance of some sort to keep functioning. That's especially true when it comes to medical equipment.

On Thursday, I had a hair cut scheduled late in the morning. About half an hour before the appointment, my caregiver starts working on getting me up in my chair and ready to go. Just as she went to pull it out of it's parking spot, I hear, "You're going to need to reschedule." She saw two wires that had their insulation rubbed off and one looked broken.

She tried testing my chin control to see if they worked and no response. I have had this chair for over three years now and haven't had any trouble with it, so I guess it was due to happen. Dad came home later in the afternoon and looked over the situation. He wasn't sure he could fix it at first, but kept working on it. Thankfully, some wire splicing, heat tape, and wire adjustments fixed the problem.

Dad said it looked like I hit something that almost completely severed the wires that go from my chin control to the computer that responds to my input. I don't remember hitting anything, let alone that badly, but evidence shows otherwise. Everything worked well on Friday, so I was able to decrease the mop on my head. However, the lift we use to get me in and out of bed sounded like the battery is going bad. That may be the next item to get worked on, but it hopefully won't leave me hanging.

The tools we use require upkeep, but it sometimes applies to our own life as well. For the past few months, I have neglected this myself. Regular readers of the quad life may have noticed a bit of depression and sadness in my writing. It is one thing to say you know God is in control of all things, but it is another to have full trust in it. I have been saying more than trusting.

This week, I have been especially reminding myself of this fact and am working toward getting back to my regular self. Becoming more isolated during winter doesn't help, but I'm looking forward more to what 2019 may bring, in any direction. As we go through this week, make sure to take care of yourself, such as diving deep into God's Word, as well as the little inconveniences that may come.