Quietly Outspoken

In Mark 16:15, Jesus said, "Go into all the world and preach the gospel to every creature." Unfortunately, many churches and individuals do "check preaching" as I say. They help to financially support missionaries to go and preach the gospel, but stop there. It's great to help support missionaries, and we should do so, but looking at the verse again you'll notice it doesn't say certain people only.

I'm not any different, I am quick to help support or encourage others to preach, but am slow to do so myself. In May, I received a message asking for volunteers to help serve at the Answers in Genesis gospel outreach booth at the Iowa State Fair. I put my name in for a few shifts, the first of which was

Friday morning.

The booth has a hand built model of Noah's Ark along with different displays asking questions about how Noah did things, evolution, and knowing Christ. I sat near one of the TV's showing a short movie about the new Ark Encounter in Kentucky. Other volunteers were handing out ark themed gospel tracts and we did sticker tattoos for kids.

While parents waited in line I would ask them about the ark and talk with them as they allowed. I saw one passer-by reading a question, so I asked him his thoughts. He gave them quite loudly and walked off. The question I heard the most though was, "What?"

When using mechanical ventilation in the quad life, you have a quiet voice. It works fine in classrooms where I'm the only one speaking, but not when there is a lot of background noise. Therefore, I kept trying to take deeper breaths and talk louder so people could hear. By the end of my three-hour shift, my lungs were sore and my throat was still sore 11 hours later.

I was able to hand out a number of tracts at least and did have short conversations with people. I'm scheduled to go two more times this week and I am looking forward to them again. I don't know how much this will make me into a preacher, but it is fun to spread the gospel. Hopefully by my next post I'll still have a voice!

Habits

One of my day nurses is quite chatty, whether I'm listening or not. Yesterday she came up with a question of wondering about any bad habits I had. She came up with one of her own and I thought about offering more, but decided to keep them to myself. i said one of mine and thought up several more as well, but kept them in my head as well.

A habit that I've been getting into with all my flat time is watching more shows on Netflix and YouTube. I'll just lay here and watch show after show until my time is gone and I can sit up again. Sitting here doing absolutely nothing is okay sometimes, but I don't like the habit it's starting to become. Playing farming simulator isn't much better, but at least with it I'm moving a little and actually doing something.

For a while, I was getting in the habit of reading while I was down. I still do it some, but not like I was for a while. When the busyness of summer slows down, if not before, I need to work on changing this routine. When I have nurses during the day, use my first down time for farming or videos and the second one for reading. It sounds like a good idea at least, we'll see if it actually happens.

Last week a friend said he liked my habit of twice daily Bible reading. Trying to offer advice on how to get into it, I had to think again how I did. This is a habit I enjoy as well, and don't plan on changing. Some nights get difficult as I want to get to sleep, but I usually make it through my three chapters.

Habits, both good and bad, become regular parts of our lives even if we don't realize it. Stepping back and looking at them is a good practice and adjust what's needed. My habit of late posts is becoming regular, but I still get one per calendar week. Until the next one, have a great week readers!

Tuesday Travels

It has been a busy day in the quad life with regular and irregular activities.

Every other year I get a regular eye exam and today was the day. Just after finding a parking spot wide enough for my lift, it started to rain. I rolled to an overhang by the door as it started to pour as my caregiver finished with the van. I stayed fairly dry, but she got rather soaked. We always look like an interesting pair heading into doctor's offices, but today was a bit more than usual.

Using a wheelchair makes eye exams a challenge since all the equipment is setup for the patient to use their seats. At one point, the doctor was straddling my footrests with his legs while holding a device directly up to my face. It would have been a really bad time for my legs to jump as he would have, let's see, noticed the bump very quickly. Thankfully, everything stayed in place and my eyes haven't changed in two years. Hopefully that will continue through to the next visit.

Next up was a hair cut at my local barber. This again is a place where patrons normally use the included seats. For me, the process is to park where the seat had been placed, then remove my chair's head rest so the back of my head can be reached. I also use two capes, one forward and one backward, to cover me and my chair's electronics. I have been going to the same place for several years, so they are used to the routine, but it's always a challenge to get everything setup and then put back together again.

After a quick stop for a few items at the grocery store, it was back home for a quick lunch, some personal care, and out again. However, the last outing of the day wasn't routine.

Two years ago, a teenager in a neighboring town was in an ATV accident and received a spinal cord injury. His injury was a little lower than mine and he was able to breathe and had some arm use, but was still classified as a quadriplegic. Unfortunately, Tyler passed away Saturday at the age of 17, just before his senior year of high school. Therefore, the last outing today was a short trip east to his visitation. I only met him once in person, but still tried to offer help via email and social media where I could.

Most days are very routine for all of us, just going about our regular activities. Sometimes, something outside the routine makes us remember why we're put in this creation. As you go through your week, remember to take time to be with the giver of life, and that routine is working for His glory.

Flat and Stiff

Muscle spasms are a regular part of living with a spinal cord injury, and other disabilities. Mine are usually pretty well controlled through medication, regular stretching, and just general body management. The last few days have been hopping though.

Some spasms are good in that they help to maintain muscle mass, improve circulation, and help with bone density. However, they can make regular daily activities a challenge if not nearly impossible sometimes. This weekend, my legs wouldn't cooperate for anything despite having good stretching exercises and foregoing footwear. These two usually are all I need, but they didn't stem the jumping. Today when sitting in bed I was still resembling a jumping frog, but it has thankfully improved this evening.

My routine of sitting for 90 minutes and going flat for three hours has been going on for over a month now and is starting to get to me. Spending so much time flat, just playing games or watching YouTube or Netflix, is really starting to get boring. It makes me feel like I'm being lazy and not contributing anything to society, and it's true.

Trying to write while flat though is very hard to do, especially if I want to see what I'm writing! Making the most of my short sitting periods is becoming more important, but gets hard when I get stiff and need frequent re-positioning.

I have become very familiar with eating my meals when flat and it almost seems strange to eat while sitting! From what I'm hearing, the increased down time helped immediately after returning from camp, but doesn't seem to be making a big difference now. In order to keep some remnants of sanity, I think I'll be returning to two hours up and two hours down routine soon.

At least with plenty of down time, I have opportunity to think and do some reading. The quad life has its ups and downs in many forms, but I can remain thankful for the time I do have and look forward to what's ahead. Whether it's less spasticity, the next up time, or whatever God has planned.

Upgrade or Downgrade?

When I received my spinal cord injury in 1985, portable ventilators were not very common. Fortunately, two options existed at the time and my parents chose a model called the PLV-100 by

Respironics. It ran quieter than the other type and seemed to work well.

For the next couple decades, this is what I used to get every breathe. I had one vent on my chair and another by my bed equipped with a humidifier. In college, my original machines were replaced with new ones of the same model and the same company, completely covered by insurance.

When I received my diaphragm pacemaker in late 2010, I continued to use my green box while I transitioned to the new system and kept them available for backup. They remained close by at all times, until last month.

With the beginning of the year, my insurance decided it would be like Medicaid and start renting vents instead of paying for them. Even though my machines were purchased around 2002, my equipment provider started receiving rental checks for both machines every month. This increased monthly maintenance fees by a factor of 12 and meant I had to update to newer models, even if I

New vent alongside suction machine

didn't want to change.

Therefore, I have now have two new vents still by Respironics, but this time a Trilogy. The large green machines are now smaller and blue, but also much noisier when operating. In talking with my respiratory therapist that does regular maintenance checks, the new machines are also not as reliable as the old.

Fortunately, it has been a few years since I have used a traditional vent for any length of time. If I did have to go back on it, this system should also be able to go on the back of my chair if needed. I wouldn't be able to make people hear me, but I would be breathing at least.

Some days in the quad life make me wonder if people who make these machines actually know someone who uses them or just looks at statistics and cost. In any case, I'm thankful that this technology exists and has worked well for so many years. I was told that some of the old vents are being taken for use in third world countries, so they will get used by people that need them. We'll see what another week will bring.

One Year of Working Legs

One year has now passed since I first wrote about my working legs and using the FES bike. In the year, I have had 26 sessions (24 visits) and biked nearly 55 miles with my own legs. I have also put about 1,900 miles on the van in traveling to and from Des Moines to go biking.

In this time I have seen my leg muscles increase in size and generally stay much less spastic for about a day after a session. One nurse has noticed the start of improved circulation in my legs and my skin doctor has also seen circulation increased to help wound healing.

I no longer grin like a child when biking, but it is still a very great feeling. Seeing my legs actually moving on their own, and getting exercise is not like anything else I do. The sensation I get from feeling them move in a regular cycle is a wonderful change to just usually having no movement. A change was made to my stimulation settings a few weeks ago and I was beginning to feel what I think was pain in my one leg. I didn't think this was good though, so yesterday they were adjusted back a little.

After missing a few months this winter, I have mainly been going weekly since late February. The increase in frequency has been a good change in decreasing muscle spasms. When I have been able to go twice a week it's even better. I can only guess how 3-4 days a week would go, but it would certainly be great to have calm muscles that still get good exercise.

At this point, it looks like I will continue to travel to Des Moines to use the system. Unfortunately, policies for insurance and the bike company don't exactly work well together. This has been a busy part of the quad life this year in coordinating time to get to the bike and get a session in, but it is one I'm very thankful I can do. This video from last week is what each time looks like, just with better audio in real life. Until next week, we'll see what comes!

Playing Catch-Up

I have always heard people say they need a vacation after a vacation. I can especially understand that when the occasion is spent keeping busy at volunteer work. For me, I wouldn't have time for another trip. It feels like I have been busy and trying to get caught up since returning over a week ago.

With web work being slow this year, I didn't have a lot waiting for me when I returned. There were over 500 messages in my inbox, but several were from Facebook and did not acquire my attention. They were all cleaned out within two days and backed up work completed on late Monday. The main culprit has been medical needs.

At camp I was able to tilt a lot of the time and not give pressure directly on my skin sores. Two of the areas had very little if any change, but the third did worsen a little. Therefore, instead of sitting in bed for two hours and then laying flat for two, I'm doing 90 minutes up and three hours down. This has already helped, but it makes it difficult to accomplish much.

Since returning, I have also had regular appointments, trips to Des Moines, getting a new vent (maybe a later post), and had more work come due to a new month. I had originally planned on doing this post a few days ago, but finally was able to take time for it.

Monday my family and I celebrated Independence Day with some friends at their house. It was good to get out again and enjoy fresh air while watching fireworks. The display was good, but I kept getting distracted by the surrounding stars. I'm not in my chair and outside very often when the stars are out, so it was fun seeing God's creation displayed while celebrating our independence to serve Him.

This afternoon had a break from the busyness of summer, but I don't expect it to last. A busy quad life is a good challenge to have, but so is taking time to stop and gauze up for a few minutes.