Sunday, February 23, 2020

Falling Lips

Most days are pretty similar and go as planned. Unfortunately, there are times that quickly make you aware that good times can end without warning.

On February 15, my parents and I had a Valentine's Day party with three of our family. The six of us regularly get together during holidays or just any occasion. I'm the youngest by about 20 years, but we still all have fun together.

After supper, we played a card game that was new to our group called Cover you Assets. My strategy ideas didn't always work, but it was still fun. The evening passed quickly and it was soon time for my night nurse to arrive. Before that though, we needed a group picture with our large sucker lips.

One of our friends, Lynn, has been having several medical challenges recently, but enjoys getting out for our parties. Dad and another friend helped her to stand from the office chair Lynn had been in, but her legs said no and instead ended up on the floor. Attempts were made to help her up, but we ended up calling emergency services to assist.

They arrived about the same time as my nurse who had no idea what was going on or who needed help. Thankfully, they were able to get Lynn back to her feet again and she got home without trouble. The next day, dad had a sore back due to lifting paper at work and wasn't able to get me in my chair for church. Early Monday morning, February 17, it was my turn to experience unplanned circumstances.

I woke up with my stomach not feeling well and it gradually grew worse. Monday night into Tuesday, I was starting to wonder if I was heading to another hospital stay with a tube in my nose. Thankfully, it started to get better Tuesday night into Wednesday and I was thankful to not have any unscheduled vacations. I'm still not eating much and have been having some problems, but I'm praying they all stop soon.

Living the quad life or not, we need to be prepared for almost anything at any time or location. When something comes, the only thing we can trust is God's is in control and to look to Him. This week will hopefully come closer to normal again, but normal can get boring sometimes.

Sunday, February 16, 2020

35 Years of The Quad Life

We are never guaranteed any time beyond the present. However, assuming I'm still around this coming Thursday, February 20, it will mark 35 years since entering the quad life.

On February 20, 1985, my parents could not have guessed how a simple trip to Des Moines would change their lives as well as mine. As a three-year-old, I was only beginning to understand the world around me and didn't know what terms like vent-dependent or quadriplegic even meant. However, God knew the plans for the life He had given me and provided just the right person to help me breathe at just the right time.

Doctors said I shouldn't go home, and needed to live in a care facility in order to stay healthy. My parents knew differently though and took me back to our house after seven months in the hospital, along with 24/7 nursing care. In the 3.5 decades since then, I have been able to go all through mainstream school from preschool through college and now stay active in various roles.

1985
At the time of injury, my parents were told I had a life expectancy to around age ten. As statistics have changed, I have always already out-lived the new numbers. Currently, the average for my injury level and age say I have about 30 years post-injury. Once again, I am already beyond that, but understand where they come from.

In 2019, three other vent-dependent quads I knew well passed into eternity. Two were kids that were only ten years post-injury and the third was a man in northwest Iowa that was given 30 years. I know a few other men that are just a few years behind me in injury length and two that have been given more time.

2020
Through all these decades, I'm very thankful for the multitude of blessings God has given me. I have loving parents that do an extreme amount for me as well as an abundance of caregivers that have done everything for me. Then there have been places like camp that I was able to spend 22 summers almost forgetting I had any challenges. Further graces such as reliable wheelchairs, transportation, mouth stick use, diaphragm pacemaker, and more than I can list have also greatly helped along the way.

Many challenges have also happened that I sometimes wondered how I could get through. No matter what came, I could always depend on God's plan and everything would work work according to His purposes. It is very true that I look forward to the end of my time in this body, but only when God calls. Until then, I look forward to serving in whatever time remains and trying to help others in this life of SCI.

Sunday, February 9, 2020

In It or Part of It?

For someone who can't move the majority of my body, I get bored when I'm just sitting. Therefore, when I get to church on Sunday morning 10-15 minutes before the service, I count everyone.

In 2007-2008, average morning attendance was 198 people in the morning and 135 at the evening service. For 2019, day-time average was 160 and evening was combined with two other churches and came to around 120. For this year, four churches have combined for evening service and numbers don't look much different.

Christians are told to be in the world, but not of the world. We are to be distinctly separate from worldly desires and influence. However, the church in general has not followed this command. When attendance started declining, churches in the Western world tried to become more relevant to attract people.

It started with changing music, getting rid of traditional hymns and singing new songs. Some of these are good, but more often they leave unclear direction with an abundance of repetition and some artists even quite anti-Christian. Changes continued with getting modern buildings that barely resemble churches and name changes that try to mask denomination affiliation and sound trendy.

We are to be good stewards of the gifts we're given and sometimes older, neglected, structures cost more to maintain than start fresh. However, we also need to be careful not to leave something that already works well.

Finally, the church has changed the message of the gospel. To make it friendlier, God's love is preached without telling the consequences of sin and eternal punishment in hell. As a result of all this, Christianity in the western world continues to decrease and we see the results of it in the world around us.

I continue to pray for a return to Christ for the United States and many other countries. Unfortunately, I believe it will get much worse before that comes. No matter what comes, I'm comforted that God is in control and everything works out for those who fear Him.

Sunday, February 2, 2020

Record to Nothing

At every job, certain people tend to always do particularly tasks. This generally works well and results in a good work environment. In the same sense, my caregivers follow the same pattern. Depending on who I have during the day, it will determine that day's activities. It all works out, until someone is gone for an extended period.

My primary day assistant, Joy, works 3-4 days a week. She is comfortable with getting me on the FES bike, driving the van, and helping with videos. Her counterpart prefers to stay around the house and do other tasks, so I generally stay in bed and do computer related activities.

On January 23, Joy worked her regular day and I did a session on my bike. I set a new record of my legs peddling without motorized assistance for one minute and 38 seconds. I also burned 0.2 calories per hour instead of my frequent 0.1. At that rate, I could eat one bite of ice cream once a week!

Unfortunately, Joy wasn't feeling well the next day, and I opted to skip biking to give her a calmer shift. The illness continued though and she wasn't able to work all last week. That meant other than church on Sunday, I stayed in bed every day. Joy called Friday that she is starting to feel better, but her mother is very ill and possibly near the end of her time on earth. Joy understandably wants to be with her mom, so will be gone at least this week as well. That means another week of trying to reschedule any planned outings and seeing if my other day assistant can take extra time.

Living the quad life means I am completely dependent on others for help. When someone is missing, regular activities get missed and everyone feels the change. I've noticed an increase in my muscle spasms with not getting to bike, but hope I won't need to increase meds again. Times like this make me wish I had another backup person that could help me and allow my parents to do there regular routine.

For this coming week, I pray that everything will work out well with schedule changes. Hopefully everything will return to normal soon, but I will keep seeing what God has planned for the near future.

Sunday, January 26, 2020

Finding more Archives

Unfortunately, the last few weekends have been cold and snowy in Iowa. I had caregivers scheduled so that my parents could get away for a full day, but they ended up staying in town. Therefore, since I had day help, it allowed for cleaning in the basement.

I'm quite certain most households have items that end up getting stored and forgotten about. I know I have posted on a few previous cleaning excursions, but the stuff just keeps bubbling up. After a few hours of work, I was soon given some bags and boxes to sort through.

One of the items was my old Toshiba laptop. I remember getting it in 4th grade and wondering what to do with it. Throughout junior high, it became a well used resource to help write papers and the 8th grade project of an autobiography. For a short time, it was equipped with a straw that I would sip or puff on to make dots and dashes for Morse code. A string of eight dots and dashes produced a single period at the end of a sentence. I quickly returned to using the keyboard and mouth stick to type with much less effort.

This machine was well before modern Windows' operating system and required a code to start it. After more than 20 years, I can't begin to remember what it was or now what to do with it. I was always interested in all the screws showing, so I see an electronic experiment in my future.

Other finds in this round of cleaning produced high school graduation gifts from 2000 and more trinkets I don't remember in the first place. If I keep working on my book, some of these finds do help me recall that time period and what was happening.

In this quad life, I'm thankful for all the tools God has provided for me so I can participate in the world around me. Some had more function than others, but they were all a part of some occasion. Now, a few items can go on to be used by other households while others may collect dust a little longer. No matter what comes this week, I am thankful for every item I've received and their various functions.

Sunday, January 19, 2020

Less is Good, Maybe

In my sophomore year of high school, I started having a lot of trouble with muscle spasms (or stretching as I said). After talking with my doctor, I started taking medication to help reduce the stiffness and be able to function. It very quickly increased from one dose a day to four until I was on the maximum allowed amount.

About a decade later, I was having trouble with pressure sores and very strong spasms even with the pharmaceutical assistance. I was started on an additional medication that also eventually increased to four times a day and the maximum allowed dose. It has now been over ten years with the schedule of two meds, four times a day, to control my muscles. Even with this, I still had a lot of trouble with stiffness and being able to function.

Prepared for cold temps
Since November, I have had a lot less trouble with my limbs stretching and everything getting stiff. Therefore, I reduced one of my anti-spasm medications by once a day to see what happens. It has now been a couple weeks since the change and I'm not having any trouble. I'm hoping to stop another daily dose in February if everything goes well. The real question is though, why have they improved?

In 2019, my three pressure sores have been greatly improving. They didn't get any worse at camp and have continued to look good (as good as holes in your skin look). My primary day assistant says she has noticed the decrease in spasms since around June and thinks it may be due to decreased pain from skin issues.

Footwear still causes an increase in problems, but I have primarily been able to stay barefoot this fall and early winter due to mild conditions. Along with that, I have also been able to get on my exercise bike more often which also helps reduce stiffness. However, little to no muscle spasms can also indicate something is wrong in my body and has coincided with hospital stays.

Living the quad life can be a guessing game sometimes. Even if it's just one pill a day, I'm thankful to be able to decrease my medications and also side effects. I'm praying my caregiver is correct with the cause of the improvement, but time will tell. No matter what, I am thankful for at least the current change and pray it continues moving forward. I will see what another week with much colder temperatures brings.

Sunday, January 12, 2020

Trusting in 2020

Living the quad life, I have to have a lot of trust in those that help me with my every day activities. That's especially true when it comes to doing anything with my breathing.

My diaphragm pacemaker has a port on the right side of my chest. A small plastic bracket sits securely in a dressing that's near my ribs. Unfortunately, it gets bumped on occasion and everything pops out of place. For my regular caregivers, most can get it back in place within a few seconds. However, my new night assistant has accidentally pulled it out three times this month already.

In order to get the plastic bracket in place, the wire for my pacemaker needs to be unplugged. Therefore, I don't get stimulated to breathe during this process. There is a bit of a trick to getting it back in place, and he is learning quickly, but it does still take a couple minutes. I am able to somewhat breathe on my own, but winter congestion makes it a challenge and during these learning experiences, I need to trust God's hand through my caregiver.

On Thursday, I needed to pick a few things from Wal-Mart and got out on the record setting high day to run errands. When I returned to the parking lot, I waited to get in the van while my assistant loaded my purchases in the vehicle. Wondering around the van, I saw a minivan parked near us that had a wheelchair ramp.

The ramp was down, with the van's doors open, packages on the back seat, and nobody around. We thought this way an odd situation, but further investigating confirmed no one was in the vehicle. My assistant and I got in my van, but didn't feel right just leaving the other vehicle, that also had a purse in it. After sitting for another 20 minutes, the minivan's owner finally rolled up and into her van. She didn't act surprised it was still open, but I guess just trusted nothing would be touched. As we sat waiting, few people noticed it, but two other nearby occupied cars seemed to be doing the same thing we were.

Some people are concerned what will happen in 2020 in the political arena as well as world relations. They are appropriate concerns, but we need to remember God is in control of all things. I will be watching as events unfold this year, but trusting in God's plan will be my main thought, even if everything seems to be going wrong. I pray that my readers here will as well and see what another week will bring.