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.