Wednesday, December 30, 2015

End

With the end of the year just over a day away it concludes a year of endings for me. Last night, I finished reading through my physical Bible again. I have been to this point many times and it's always refreshing looking back all the way through God's Word and His plan for salvation.

Sunday was the end of my three-year term as deacon at church. These years have taught me to better see how my church is run and how decisions we make can have a lasting impact on many people. It has not always been easy and I am glad to be finished. However, going back to a regular member will seem strange for a few weeks as well as not knowing more of what's going on at church and my fellow members.

October was the end of using a full trach. I'm completely familiar with a free neck now and feel pretty used to just having the button. Unless it gets bumped, I don't even notice it's their anymore. With being completely dependent on mechanical ventilation, I may have to go back to a trach again sometime. For now though, I can say I ended the year without having one.

This year finally saw the end to working on a new chair. This has taken many years and I'm very thankful to be finished with it. I believe the final solution was a good choice for my needs and is working out quite well. Their are a few things I liked better about my old chair, but I guess having it be completely the same wouldn't be a change!

My legs also ended their complete laziness this year and biked over 15 miles. They still do a lot of just laying out in font of me, but at least they did something for a change this year. I measure the circumference of my arms and legs every four months to see if I'm loosing muscle or staying constant. Both legs grew in the last four months, when doing the bike, than they have in years. Yet another reason I hope to continue biking next year.

The coming year will likely have more beginnings and ends as the days go on. The quad life has many unexpected turns, but I know God is in control of it all. I pray your year will go well and I plan to continue regular entries here, and possibly elsewhere.

Wednesday, December 23, 2015

Winter Thunderstorm

It has been a calm week in the quad life. After four visits, my dentist finally finished work on my tooth. Thankfully it hasn't been too much of a problem in using my mouth stick. With ordering my girlfriend's Christmas present, I also finished Christmas shopping for the year. It was once again all
done online with no stores to visit.

Winter officially started two days, but it still doesn't look like it. A thunderstorm just went through with pouring rain and small pieces of hail. Two days before Christmas I would expect any precipitation to be either snow or ice, not something to remind me of summer. I will gladly continue with warm temps. Now that winter is here, it means spring is coming next!

My Christmas train tree added a few new ornaments this year. They are hard to find, but mom does manage to get them.

The two big web projects from this year are almost complete. For the first time in months I had free time while sitting to do other work. Getting caught up on paperwork wasn't fun, but it needed to be done. I may have more long-term work coming again, but at least these will be finished.

With work slowing down and the end of my term at church complete, I started taking the School of Biblical Evangelism. It's a course on evangelism in the modern world through an organization called Living Waters. I've been looking forward to having time to take it and so far it has been interesting.

That's all for this week. Have a Merry Christmas!

Monday, December 14, 2015

Christmas Season

This weekend was a soggy one in Iowa. By Sunday evening, we had received two inches of rain with more coming down. The weather has been unusually warm for late fall, and I am very glad to see it stay. Even though it doesn't feel like it, Christmas is less than two weeks away.

Last night at church was our annual candlelight service. We have a service primarily of music sung Silent Night by candlelight. In the picture, I'm a couple feet to the right of the photographer, nicely out of view. It is a favorite service for many members of our church and visitors.
by the congregation, choir, praise team, and solos by different members. At the end, everyone sings

Singing praise to God for the gift of His son is a part of this season I enjoy. We can easily get distracted by getting gifts for those around us and forget the real gift we have all been given.

If you're reading this and don't know God's gift of Jesus, I encourage you to stop and investigate. In Exodus 20, God gave His commands to follow and has written them on our hearts. They may seem simple, but I know I've broken all of them at some point. Jesus said that all have sinned and fallen short of His glory. We are all deserving of eternal punishment for breaking these commands.

What we celebrate is the release from what we deserve. With Christ's birth, and sacrifice, we can have everlasting life in Him. Repenting of our sins and trusting alone in our Savior is the gift of salvation.

Living the quad life is difficult, but it is nothing compared to the glory to come. In this season, remember to keep Christ in Christmas as the reason we celebrate. For unto us a child is born, He is Christ the Lord.

Monday, December 7, 2015

Fumbling Funding

If you're a fan of sports, then stop reading now. The past few weeks in Iowa have greatly confirmed why I detest sports in general.

Apparently the football team at Iowa State University (ISU) hasn't been doing well. Therefore, the coach was fired in order for improvement. However, along with being let go, he was paid $4.5 million to finish his contract. Less than a week later, a replacement was hired for $2 million for his first year.

In the time of less than a week, the school has agreed to pay $6.5 million for one position.This isn't even anything to do with teaching academics to students. I can guarantee the instructors don't get a seven-figure salary every year. This is entirely for nothing other than entertainment and bragging rights.

How many students' tuition does it take to cover this cost? Every year we hear abut increasing cost of higher education and students taking on more debt. Guess what, I found a place money can be saved! If you have to have the job, why not at least make it something like $100,00 or something close? The worst part, this isn't the only sport at ISU.

I can't begin to guess what all sports they have, but each one has multiple staff members with salaries. I don't dare to Google what these coaches receive, but I would not be surprised if they added up to several more million per year.

Iowa has two major universities as well as smaller state supported schools with sports. Looking to the all the universities in the country, how many billions of dollars are being spent just on coaching salaries? I can only imagine what could be done if these funds were spent on education instead, or not even added on to tuition

When I went to college, my school didn't have any sports. My classmates and I received an education that was respected by the community. A few years ago they started having sport teams. It was announced early this year that my college will be closing in June 2016 due to too much debt.

Maybe if I wasn't living the quad life I would better understand how this spending makes sense. For now though, it just solidifies why I don't support or follow any such activity.

Monday, November 30, 2015

Thankful 15

Last week, the United States stopped for our annual day of giving thanks. Some people were thankful to stand in a line to get bargains. but many observed the day for its intended purpose. When we stop and think, there are many reasons we can give thanks. Since we are nearing the end of 2015, I thought I would find 15 reasons to be thankful. In no particular order, they are:
Thankful for birthday gifts.
  1. The sacrifice of God's Son for the forgiveness of my sins.
  2. Parents that help me with every part of life.
  3. Caregivers that also help me with everything and give my parents rest.
  4. Living in a country where I can freely worship God as a Christian.
  5. A warm home to live in outside of a care facility.
  6. Good health, at least for a guy who isn't breathing independently and has multiple holes in his butt.
  7. Being able to do at least some work
  8. Technology that allows me to communicate with people wherever they live.
  9. Wheelchair that functions well and allows me to get out and be active
  10. Diaphragm pacemaker (and vent) that have provided me air for so many years.
  11. Living at a time where I can access most places I want to go and participate in the community.
  12. Friends that I can easily talk to and share absolutely everything I'm going through.
  13. Having a reliable vehicle that allows me to easily travel anywhere I need to go.
  14. Worshiping in an active church where I am able to serve God.
  15. Technology that allows my body to do more than I expected.
  16. Another year of experiencing God's blessings.
The last one is for looking toward another year of the quad life. This list doesn't even begin to include items like being able to experience God's creation with sight and sound and much more. As you reflect on Thanksgiving leftovers, see if you can make a list of 15 items, plus one for the coming year.

Sunday, November 22, 2015

Snow Day

It is not uncommon for Iowa to have received our first snow by this time of the year. The annual occurrence came this past Friday. However, it wasn't the usual light snowfall that may just accumulate in the grass. No, this was a real abrupt welcome to winter.

Some parts of Iowa received 14" of snow, with a few locations only getting a dusting. We were in the 5"-7" range of accumulation. That's a good amount for the first snow of the season, but not anything extreme. The most challenging part of this storm was the roads.

Early Thursday morning, my parents left for Minneapolis for my dad's work. They had planned to watch trains afterword and get back home sometime on Saturday. With the weather predictions though, they started back from Wisconsin in early afternoon.

At first the snow wasn't bad and stopped a few times. Unfortunately, the closer to home they came, the worse road conditions became. Finally, about 19 miles from home, they couldn't progress any further and stopped for the night at my grandmother's house. My caregiver and I assured them we were fine and the night nurse would make it.

However, less than two hours later, my night assistant called that the main roads hadn't been treated and she couldn't make it. Therefore, it was down to just the current helper and I. Earlier in the day, my primary day assistant and I had talked about possible plans in case everyone was snowed in. Since she lives only a few blocks away, she was able to make it to my house to help.

Throughout the night then, my two caregivers switched off letting one rest while the other was responsible for me. This is the first time I have been at home with a nurse unable to come due to weather and my parents gone. I'm very thankful it worked out and that I've been given caring people that are willing to do whatever is needed.

Unexpected times in the quad life can require thinking of new solutions. I can see God had everything ready to easily work out and I just needed to follow His plan. Hopefully this is the only time for a major storm, but it's unlikely. When the next one comes though, I know it has already been planned.

Sunday, November 15, 2015

Planet Earth

A few years ago, the Discovery Channel had a series called Earth. I have seen it before, but I put the series on my list for Netflix. The first DVD came last week and I watched the initial three episodes.

The high definition video really makes you feel like you are seeing different areas of the world through your own eyes. As each show focuses on one particular area or theme, you get to see the complexity of nature and the beauty of creation. As a Christian, I marvel at God's creative work and the world He has given us.

Of course the narrator attributes everything to occurring slowly over millions of years and just being a byproduct of chance. Looking at the world from a Biblical standpoint, I see stark evidence of the flood in Noah's day and the results being displayed in geology.

In one show, we're told how the Colorado River slowly carved out the Grand Canyon, but it's not today. As was evident after the Mount Saint Helen's eruption, a release of a lot of water can easily create a canyon in just a few hours. The Grand Canyon is a result of this with water collecting as the flood subsided.

With all the beauty of the earth, a lot of it is also ugly and cruel. Another scene showed wild dogs hunting prey and devouring their catch. Thanks to the entrance of sin, our paradise was lost and along with its remaining elegance, much pain exists.

As you go around your part of the planet, look for special parts of creation that God has given us to enjoy. It can be a challenge at times, but it is always there. Living the quad life often forces me to have to go slower than I would like, but it gives opportunity to look and see the world around me in its majesty and malignant.

Tuesday, November 10, 2015

Bike Update

Back in July, I started using the FES bike at Younkers Rehab in Des Moines. Since then, I have been going to Des Moines about every other week for a ride. In my time I've done eight sessions and have biked 11 miles. This coming Thursday will likely be my last ride for the year.

In order to get the electrodes on my legs, I have to wear shorts. It's late enough in the year that shorts really aren't an option any more. The forecast for this week is a high of 51° and wind gusts up to 40 mph. We're planning to cover my legs in a blanket and try to make the roll from van to indoors as short as possible.

Biking hat
The newness of it has worn off, but I still greatly enjoy my biking days. My legs are much calmer than usual and it's still a good feeling to have my legs moving a little under their own power. I wish I lived closer to a system or lived in a warmer climate that I could keep going.

We started the paperwork trail to get my own bike not long after my first session, but most of the communication occurred in October. Restorative Therapies, the bike producer, said that we needed to purchase the bike before insurance would pay for it. My insurance said they needed a prior approval submitted, and then they would either approve or deny the bike. We went back and forth a few times, but we're back to me needing to purchase the system in order to get it. Insurance would then be billed and the funds may be recovered.

Unfortunately, I don't have over $14,000 just sitting around to be able to buy the bike. I've been told grants are available, but I'm not able to use them . Therefore, it looks like I won't be able to get my own system to use at home.

I understand this isn't a device necessary for life and that it is just nice to have. If I did get to use it at home 3-4 days a week, the main result would only be calmer legs and maybe getting to reduce my meds. That would be great, but no real difference in the long run (or bike ride).

Hopefully when warm weather returns I can continue my miles. However, with not being able to get my own, I don't know if it would be real helpful to continue alternating weeks indefinitely. Part of the quad life is about making choices. We'll see what comes with this in time.

Monday, November 2, 2015

Three Headed Monster

In junior high I remember diagramming sentences. My teacher took us through what he called the three headed monster of the process. I didn't like facing the monster then and lately it seems like the creature has returned.

The last few months have very busy for work and it seems like I can never get ahead. Today for instance, most of my sitting time was spent getting billing out for last month's work. That is now finished, but as I type this at 7:30 in the evening, I have yet to touch my regular Monday morning assignments. When I sit up in another hour, I will finally be able to get it started. However, the ongoing projects that need work likely won't get touched, again, today. This is the first head of the monster.

Second is the head of funding frustration. Last week I talked about the wisdom of government funded insurance. In talking with my county DHS worker, she advised it would be better if I didn't work, at least not for pay. Yes, work can be frustrating (see head 1), but I would much rather be too busy than not doing anything. I do know other people with disabilities that only do some volunteer work, but I know some would much rather be working for a living. I'm thankful for what I can do and I cannot see myself sitting and laying around all day playing games.

My final head is just regular life with a major disability. Mom is once again spending her evening doing paperwork so my day caregivers can get funded. Earlier this evening my parents were discussing who had to do what and who could come with me during my council meeting at church tomorrow night. The last ten days or so have also needed a lot of suctioning to keep my lungs clear requiring more work from my parents at times we don't have help.

Rolling back though and looking at everything as one beast to tackle can seem like too much to handle. However, a slight glance elsewhere reveals the problems aren't bad. Bringing each and every item to God in prayer starts to tame the dragon.

None of my clients are getting too frustrated with my lack of speed in processing requests. I know I'm doing the tasks God has given me and have been for years. Political schemes change, but the king of kings is Lord of all. I've also been given a family that is very caring and willing to do what's needed to make our situation work.

It took the entire school year to tackle the diagramming monster, and this one will take time as well. In the last two months, two campers and one counselor from CHAMP Camp have been released from earthly cares. I can be thankful for the quad life I've been given and continue to run the race before me, being sure to jump the hurdles. Another week can bring a new set of circumstances and they will be tackled as they come.

Sunday, October 25, 2015

Wrapping up October

Today starts the last week of the month, and it has been a busy month. Tuesday will be my fourth school visit and finish what is currently planned. With more blessings than I can count, there have also been a few struggles.

For the most part, I'm liking the new trach button. I like having a free neck and the smaller profile of the button versus the trach. However, I've had a lot of drainage around it and we're cleaning around the area four times a day. With the trach, we only had to do once a day. The last few days have required a lot of suctioning (clearing out my lungs) due to a cold or something I have bugging me. It does work with the button, but not quite as easily and it does hurt my throat more. Hopefully the suctioning will return to normal soon.

Some good news, I am approved for Medicaid again. However, they added a stipulation that I need to pay over $200 per month in order to keep it. My main income is still Social Security with a little from working on web sites. September was my busiest month this year, and therefore I had more income from work. I pay myself a low rate and with it being busy, I still only had 25 hours for the entire month.

Even though my monthly average is well below last month's earnings, Medicaid based my monthly income solely on the last month. So as it currently stands, I will need to use a third of my income to pay for insurance that is for people like me that can't afford insurance. Using needs based income to cover needs based insurance just doesn't make sense. Now with monthly rent and uncovered medical expenses, it's going to be very difficult not to spend more than I receive. I'm well aware this what most people need to watch, but it still seems wrong.

As I tried to tell the kids in children's service today, we need to do things as God tells us, including not to worry. I know I say it often, but it's a hard one to do for me. I pray that next month will be calmer in the quad life, but I'm guessing it won't be a big change.

Wednesday, October 21, 2015

Paperwork

We live in a world that has an ever increasing amount of resources online. Information can be transferred in an instant and with automation, approvals given automatically. Unfortunately, not everything works as quickly, and that is where problems can occur.

About a month ago, I received my annual form from Medicaid wanting my information and making sure I still qualify to receive it. I know the US Post Office (snail mail) can be slow, so I try to get it filled out quickly and sent back so I meet the deadlines. Sometimes they require more detailed information on my income, but not always.

Two weeks later, I received another letter requesting copies of my latest bank statement and income from work. This letter had a stamp of October 6 on the envelope when it went through the Des Moines Post Office. My information was copied and sent as requested. I received another letter, with a date of October 5, saying my Medicaid had been denied for not giving all paperwork.

Therefore, I was denied for not providing paperwork I hadn't been asked to provide. It's one of the wonderful results of snail mail and living in a state that is trying to save money by reducing Medicaid expenses and ship the governance of the program to another state.

Without Medicaid, I won't have funding for my day nurses, dentist, and several other medical expenses. I have it until November 1, so I'm praying my case will be reviewed before then and everything will continue as is. Unfortunately, basically the same thing happened last year, but I was re-enrolled already before receiving my denial letter. Fun with funding never seems to cease.

As I said last week, I have enjoyed many blessings lately and am thankful for them. God knows what I need, well before I even ask for it. In this matter, I know it isn't any different and will work out in due time. A large part of the quad life is relying on God's plan and timing, especially with annoying politics.

Tuesday, October 13, 2015

Going Strapless

For over 30 years, I have had a tracheostomy (trach) and ties around my neck to keep it in place. When you use a traditional ventilator for breathing, this is your primary option for getting air into your lungs comfortably. However, I have now gone strapless.

Since I started using the diaphragm pacemaker system in 2010, I have capped off my trach and breathed through my nose and mouth. Since I was still using the vent part-time, this worked well. It has now been about two years since I used the vent and other than clearing my lungs by suctioning, the trach has stayed capped.

One of the problems with having a trach long-term is that it can rub the inside of the throat. There is also a major artery nearby that can be rubbed through causing major, to total, blood loss in a very short amount of time. I've been feeling a lot rubbing the past few months and was causing a sore throat. With this in mind, I made a switch this past Friday.

After a short doctor's visit, he replaced the trach with a trach button. The button is similar to what I had in that it's capped off and allows me to breath normally. We can also uncap it in order to clear out my lungs. The main differences are that it is about a quarter of the length of the trach and it keeps itself in place.

It has felt great getting rid of the rubbing in my throat, but I'm still getting used to having a bare neck. Shirt collars rubbing feel really strange and it sometimes makes me feel like the trach is going to pop out without the ties in place. I've had a lifetime of getting used to the old method and four days for the new, so I think it will take time to adjust. I mainly keep it under my shirt as well, so not many others notice the change.

Through the last few months, I have had several large blessings; getting a new chair after several years work, seeing my very good friend for the first time in many years, and now this. I'm thankful for the good things God has given me, but wonder what trials await.

I'm scheduled to see my doctor again in November and we'll see if the button stays or the trach returns. Until then, I enjoy the new freedom in the quad life.

Monday, October 5, 2015

Chilling Down

The last few days have had a definite decrease in temp across Iowa, and I don't like. Thursday was a day to ride bike in Des Moines, and shorts are required in order to get the electrodes placed. The morning was just in the 50's, but it didn't feel bad if I stayed in the sun.

As I rolled up to the hospital entrance, a man wearing jeans and a sweatshirt walks out. He looks at me, wearing a jacket and nothing from knees down, and just slowly shakes his head as he walks off. Unfortunately, I'm guilty of similar treatment of others.

There have been several times over the years that I have seen people wearing shorts in what I considered cold weather (30° or less). I've wondered in my head how they could stay warm in such an outfit. Not knowing the reasoning for my choice of wardrobe, the sweatshirt man at the hospital was likely wondering the same. I think there's a lesson to be learned from this experience.

Friday was my first school talk for the year and it was another chilly start to the day. This school was two classes of second graders, about 10-11 per class. The first one had won a party day and everyone got to wear their pajamas for school. I can't say I've ever spoken to a class in pajamas before, but it was fun. Both classes were pretty calm compared to some I've had, but they still asked good questions and seemed to be catching on.

With being out on cool days Thursday and Friday, I was cold even in the house Saturday. Going to church Sunday didn't help with waking up to 42° on my outdoor thermostats. I kept the sheet and blanket on all afternoon yesterday and this morning as well. I finally warmed up about lunch time today, but am starting to feel the chill again, even at 75° in my room.

Every year is an adjustment period as the weather changes from warm summer to cold winter. Temps in the 50°-60° range feel chilly now, but will feel nice and warm come March next year. I'm thankful to be living in a warm house though and able to remain active in the community, even if this quad body complains.

Tuesday, September 29, 2015

Committment

It's rare that I take more than one vacation er year, but it happened this past weekend. In June I was able to visit the Creation Museum and CHAMP Camp and this most recent to northern Indiana. A friend of mine, Jeff, had a commitment ceremony.

Jeff does not have a spinal cord injury like me, but he does have similar needs. He is unable to use his arms or legs, requires mechanical breathing, and uses Medicaid for funding. If he, or I, got married officially according to the state, he would no longer qualify for Medicaid and couldn't receive medical funding. Therefore, this ceremony was the same as a wedding in that the couple vows lifelong commitment to each other, but without the state paperwork.

Groom and I waiting to roll in.
The ceremony was definitely unique for weddings I have previously attended. This was much more laid back and "play it by ear" than I've experienced. I was the best man for Jeff and his younger brother stood with us as well, when he wasn't tending the music. I'm glad I was able to support Jeff in his milestone of his life and pray for many happy years ahead for he and his wife.

Last week, I wrote about Ken and the unexpected turn of events he had. Unfortunately, he is still in the hospital in Iowa City, so we stopped to visit him on our way home. Thankfully, he is able to somewhat speak again, but it looks like their will be a long road to recovery yet. My experience required two weeks in the hospital and I'm guessing it may be similar for Ken.

Unfortunately, I have a lot of experience of not having many friends outside of family. When you live with a severe disability, it is hard for people to understand the challenges of daily living and often shy away. Past birthday parties have mainly been relatives with one to two friends able to come. For these two friends, I'm glad that I have been given the ability to sit alongside them in times of celebration and struggle.

In the quad life, and every life, we need to be thankful for those God has put around us. May we all have someone to turn to for all occasions in life.

Tuesday, September 22, 2015

Schedule Change

I had on my calendar for today a trip north to Waterloo. Ken is a friend and has been a fellow quadriplegic for about 25 years. For the past 15 years, he has been forced to live in a nursing home in Waterloo.

About two years ago, a church started visiting him regular and today we were going to see Ken's baptism. This was an answer to prayer and I was glad to be able to see this milestone in his life. Unfortunately, another one of the unexpected times popped up last week, but not for me.

Last week Ken was rushed for emergency surgery for colon trouble and is still in the hospital today. In 2010, I had similar problems while working at CHAMP Camp in Ohio.

My belly looked like I had swallowed a watermelon whole. The head medical people sent me off to the hospital where I had surgery for a kinked bowel at 1:00 in the morning. For nearly the next two weeks I stayed in the hospital with an NG tube in my nose and unable to eat, but still watch TV with food commercials.

Since he has been in the hospital, I haven't been able to speak with Ken, but have communicated through friends and relatives. I'm praying he'll have a shorter stay than I did, but I'm guessing he's in a similar situation.

In Matthew 6 we're told not to worry about tomorrow, for today has enough trouble of its own. I see that pretty well every day, but especially when times like this arise. We will most likely plan another day for baptism, but that will be some time in the future.

Whether you're living the quad life or not, live each day to the most you've been given, for you don't know what tomorrow will bring.

Sunday, September 13, 2015

Visitors

My parents try to take an extended vacation every fall if we are able to hours covered for assistance. Thankfully, everything worked out and they left last Wednesday for a ten-day trip. That meant the house was all to myself and had an extra bedroom. Therefore, my BFF came over with his son for a few days to visit.

John just moved back to the Midwest after living near Washington D.C. for several years. We've talked many times via webcam and messages, but it has been about six years since we've seen each other in person. This was also the first time I met John's two-year-old son, TJ, in person.

I have been around kids for extended periods at camp, but not as young as TJ. It was a fun experience getting to have him around for a few days. He didn't seem to be too scared about my chair, mouth stick, or me doing things while in bed. Other kids that have met me are usually a little unsure at first, but that wasn't the case for TJ.

He wondered around without batting an eye at my chair and chatted with me just like everyone else (my caregivers) that was around. Our group strolled down the street Friday afternoon to the park to play for a while. TJ easily rode on my lap the few blocks home and almost fell asleep before we arrived.

After TJ was in bed for the night, John and I stayed up and just talked about various topics and got caught up. After staying up to 12:30 A.M. two nights in a row, we hadn't solved all the worlds problems, but it was great having him to talk with again in person.

The visitors had plans at home Saturday evening, so they left about mid-morning after a four-day stay. With them living closer again, I hope to make it at least an annual event, but we'll see what God's plans are for that. As TJ gets older, I could see trips getting both easier and harder.

This week in the quad life has been great for looking back at times past and possible future activities. We'll see what comes after a week of having the house to myself.

Monday, September 7, 2015

Labor Pains

No, I'm not giving birth. If I was, I don't think I would need to blog about it as it would be in the news already. In this past week we have seen work ethics strongly challenged and I think it's only the beginning.

If you haven't heard, a county clerk in Kentucky, Kim Davis, refused to issue marriage licenses to same-sex couples. Defying court orders, she continued to not approve licenses citing it was against her Christian values. The last I heard, Mrs. Davis is now in jail for her actions until she changes her mind.

I commend her standing up for her faith even to the point of being jailed. Unfortunately, it shows very strongly how far this country has come in despising Christians who stand on God's word. Some comments have wondered if a Christian can work in public office anymore and what, if any, legal backing business owners have.

When preaching about Christ's resurrection to the Jews, Peter and John were arrested and commanded not to speak in this manner any longer. They responded by asking if it is better to serve God or man (Acts 4:19). Man's laws continually change and aren't always in accordance with God's law. For Peter and John, as well as many others in scripture, the answer was to serve God. For Mrs. Davis in Kentucky, the answer appears to be the same.

We also read that if the laborer does not work for the Lord, he labors in vain. With the current political landscape becoming more hostile to Christians, it is becoming increasingly difficult to fully labor for the Lord.

Many of the freedoms that this country fought for are now quickly being taken away if you don't agree with the current trend. I pray this doesn't become worse, but God has told us in His word that it will. Food for thought this week in the quad life. When asked to do something against God's will, who's command will you follow?

Sunday, August 30, 2015

New Wheels

Power wheelchairs are supposed to last about five years. Since I got my chair in about 1996-1997, it has filled its life expectancy and then some. With parts getting hard to find and it starting to show its age, I started the process of getting a new chair eight years ago.

After looking at several options, I found one that I thought would work. However, after five years of frustration and finally legal assistance, that chair is gone and I started again early this year. I'm happy I can finally say I picked up my new power wheelchair last Thursday. It has been a long wait, but this looks to be a good improvement.

My dad is extremely good with fixing things, especially wheelchairs. Even with my three decades as a quad, this is only my third power chair. This is the first chair I've been able to choose the color, so I got midnight blue. Not much of it shows, but it is there. Another first for me is that this setup does not have a place for a ventilator.

It has been nearly three years since I used a vent outside my home. Therefore, I decided to leave this attachment off and shorten the total length. I still have my old chair with the vent tray if I need to go back on it, but I pray that won't be needed. The trick now is to figure out where to store my portable suction and ambu bag, but we'll figure it out.

Saturday, dad and I took the chair out around town for some testing. It worked well on the bike path, but the settings still need some adjusting. The biggest relief is that it fits well in our church elevator, with a few inches to spare! After years of having to push against the doors to fit in, it will be a nice change.

There are still a few things that need work, so I won't be fully switched for a little while, but this is definitely a big step in the right direction. Unfortunately, after getting home from Saturday's testing, dad noticed something leaking from the back of the van. Further investigation found that the rear axle needs work and it isn't going anywhere. Therefore, this week's upcoming bike ride and meetings are likely not going to happen unless he can get it fixed quickly or find something I can fit in. Church today was via radio and likely will be via computer tonight.

I am thankful to be seeing an end to all these years of working on a new chair. Now if the other wheels I use to get around cooperate, I will have well functioning transportation all around. Fortunately, we didn't have problems while we were out or when it was just my caregiver and I. We'll see what the next week brings in the quad life.

Sunday, August 23, 2015

Advice from a...

For the past few years, I have stopped at a particular booth at the fair that sells t-shirts. The booth's main promotion is the Iowa Arboretum, but they sell shirts that say "Advice from a..." Then various items offering advice. So far, I have advice from a: trout, woodlands, barn, pig, and this year's addition, firefly.

Each one includes four to five sayings that are the item's advice. Most are common phrases I've heard before, but often produce thought or a smile. A few items of advice from the barn are to hold your horses and keep your barn door closed. For the trout, he says to keep pulling and not go after shiny objects. They are fun shirts that can start a conversation or just to wear around the house.

I was thinking the other day of what I would put on a shirt for advice from a quad. They aren't quite as witty as some of my shirts, but I think they fit. Here is the list I have from today:
  • Keep on rolling
  • Go with the flow
  • Accept a helping hand
  • Go forth and conquer
  • Speak softly and carry a mouth stick
If I keep thinking about it, I may swap a few out, but that's a fairly good start. Roll with the punches was a possibility, but I didn't think it sounded quite right. Maybe someday I'll perfect them and offer them to a t-shirt company.

This looks like another busy week, so it's an early and shorter post this time. For now in the quad life, it's time to keep on rolling.

Tuesday, August 18, 2015

Dodging Rain Drops

The Iowa State Fair is an annual event that my family likes to attend. We don't really do anything particular, we just like going. It started last week Thursday, but the weather was forecast to be very hot and sunny with today being comfortable in the low 80's and a slight chance of rain. You would think in my 33 years I should have learned not to trust meteorologists, but I haven't.

Thursday was a wonderful day that would have been great to spend outside. Today barely got up to 70° and rained all day, sometimes quite heavily. Nevertheless, my dad, main caregiver, and I tackled the fair despite the weather. Getting parking that works for my van is always a challenge, but we easily got to the correct lot with very little crowd. The attendant then gave us a spot that perfectly put my wheelchair lift into the largest puddle anywhere in sight.

Before getting out of the van, we started what became the day's routine. Put a poncho on to cover my chair and myself before going out and take it off when inside a building. While wearing this outfit between buildings, my caregiver and I noticed an odd behavior from people around us. They would give me an odd look (which is normal), look down at my feet, then with even bigger eyes look back at me.

I don't know if they thought my bare feet were indicative of my outfit and that I was naked under my poncho or what was going through their heads. I maybe should have asked, but no one wanted to stay out in the rain longer than necessary. With that being the case, we did go through buildings more thoroughly than normal and didn't mind waiting to see something. At the model railroad layout, we spent about half-an-hour talking with a member about his memories of steam trains and enjoyment of models.

Shortly after we returned home from paddling through the fairgrounds, the rain stopped and sun came out. The added challenge made for a new experience this year, but not one that I hope to repeat. Today's lesson in the quad life is to remember that God has made the earth with its weather systems and fallible man (like meteorologists) is still trying to understand it.

Monday, August 10, 2015

Positive Thoughts

A few of my online friends do not believe in God as I do and live their life accordingly. I share the life I've been given as a Christian and try to be an example of Godly leaving. I have found an odd phrase though that to me, doesn't make sense.

When something isn't going well and is a time I would ask for prayer, these friends ask for prayer and positive thoughts. I always wonder what positive thoughts are supposed to do. It's great to think nicely about someone and have an uplifting attitude around them. However, I don't see beyond that what the purpose is. Who are you thinking positively to or who are you willing these thoughts toward? It's just something that doesn't seem to make sense, but I'm coming at it from a different perspective.

As a Christian, I believe we're called to bring requests to God in prayer. If someone is struggling in some situation, this is a great time for prayer for the individual. It can be comforting knowing you have a community of people praying for you. I guess it can be somewhat similar if people are thinking positively about you, but it doesn't seem to be as significant.

I learned this weekend that a fellow graduate camper from CHAMP Camp passed away. Karen had full control of her body, but used breathing assistance at night. I don't remember her diagnosis or know how she died, but she was close in age to me and appeared to be in better physical condition.

Other camp friends were sharing memories from our years together at camp and how Karen was one that could always make us laugh. I remember "catching" her one night at the battle between the boys' and girls' cabin giving a good soaking with a squirt gun. Times have changed in that we no longer have these exact feuds, but memories and stories continue.

We are given a short time in this life and have an impact on others whether we acknowledge it or not. This family will be in my prayers as this woman is laid to rest. Challenges abound in the quad life as in any other, but there will come a time when every knee shall bow and tongue confess, Jesus is Lord of all.

Tuesday, August 4, 2015

New Additions

Two weeks ago, I wrote about how my chair is showing its age during my biking sessions. I now have an upgrade thanks to these findings.

Late last week I received a new cushion for the seat of my chair. It's more basic than what I had, but it's a big improvement. My butt no longer sinks in with my legs going up to meet the seat. That means my feet now lay flat on the pedals and I sit higher in the chair. It's great to see my heals no longer floating in mid air, but now the upper half has problems.

I can barely reach the button that allows me to get my controls back in front of me and my side now rubs on the armrest more. One of three pressure sores is also now more irritated than it used to be, so it likely means the pressure in the seat needs to be adjusted.

When dad took the old cushion off, the glue from the Velcro fasteners was a gelled gooey mess. Also all the years of use had taken a major toll, so it was enthusiastically tossed in the garbage bin. I'm glad to see the change though and have been up in my chair a little more since the cushion has been on. This week's bike ride will be a real good determining factor for it. The other addition this week is a little more on the wet side.

My family and I are not pet people, but I do have a 45 gallon aquarium in my room. Probably 6-7 years ago we got three little orange platies for the tank. They apparently were very friendly as we haven't purchase any sense then and regularly have 30-40 fish. Since they have been inbred for so long, some have small fins, missing, etc., but it has been a tank of orange fish of various sizes. Saturday we purchased a couple angelfish, one light gray and two black.

Angelfish like to eat small fish, so we're hoping they will hope solve the overpopulation problem we've been having. After so many years of the same fish swimming around, it seems odd to look over and see something different.

Whether it's a higher view in my chair or a different one in the tank, it has been another busy week in the quad life. We'll see what comes up in another seven days, or less!

Monday, July 27, 2015

Sleepless in Iowa

I have heard many people talk about not being able to sleep at night. It seems to be a common topic for health advice, sleep medication, and news items. Unfortunately, it's a problem I share with many others in the country.

For many years, sleeping wasn't much of an issue for me, but it has become more and more of a problem as time passes. The last few months have been especially bad and I can't quite put my mouth stick on a reason.

Waking up in the morning
In order to save time during the day, I have always had a lot of my cares done at night. My caregivers do my stretching exercises a couple times, do my bed bath, trach care, restroom needs, turn every two hours, and more. With that list, you might wonder how how I sleep at all. Since I can't feel my body, and what they're doing to me, it's pretty easy.

As long as the pillow stays over my head and no one touches my face, I'm good. The problem is with what I can control, my head. It seems at night is when everything runs through of what I need to do for work, for church, or even ideas for blog topics. I write some pretty good posts under the covers, but too bad my computer isn't connected to my head.

The sleep aides that I take don't seem to help much either in that I can hardly tell I took them. It's becoming quite common for me to have 1-2 hours of sleep at night and not much more. With laying flat in bed so much, I sometimes think my body is just too used to it and the position doesn't feel like sleep.

If I figure out a good method, other than a hammer, I'll let the world know. Until then, I'll continue the sleepless quad life routine and think of next week's entry.

Tuesday, July 21, 2015

Deteriating Chair

During last week's bike ride, the poor shape of my chair became more evident. We noticed before that my seat cushion was uneven, it pushes my right leg higher than the left. My right leg is a little shorter than the other already, but the cushion is making it worse. Every time my legs came down, the cushion on the right would bulge out like a balloon. The left side behaved nicely though.

The cushion I used is called a ROHO and uses air to adjust to your needs. My particular model allows four different section to be adjusted independently, under each leg and two in the back. A couple days after the ride, my assistant and I tried to adjust the cushion.

Adding air helped to put the back portions higher, but the front looked ready to explode. Releasing some pressure under the legs helped, but it still has some problems. I'm hopeful this week's ride will be better with the improved cushion, but I'm not holding my breathe.

On Sunday, we had a family party for my grandmother's 85th birthday last month. My cousin that doesn't get to come very often was able to attend along with his wife and four kids. His oldest sons (twins) have always been talkative when around me and this time was the same. However, now that they're 13, they are getting quieter. They and their seven-year-old brother were getting bored, so we went outside for me to warm up and give them something to do. An idea came up to have me race the younger brother a predetermined distance.

A running kid easily beats my 5 MPH top speed, but I do give a challenge. However, my chair didn't really agree. The left wheel kept popping and making odd sounds at every match. Fortunately, the boys' minds went on to other activities quickly and no longer needed speed. Last night though, we gave it a better test. After a meeting at church, I went to leave, to find out the elevator wasn't working. Four guys ended up carrying my chair, and me, up a short flight of stairs in order to get out of the building.

I'm thankful my old chair continues to work and get me around everywhere. Hopefully I will have a new one by the end of the year, but time will tell. That's all for this week in the quad life.

Thursday, July 16, 2015

Working Legs Addition

Even with the longer than usual post Tuesday, I wrote too quickly and forgot an important part. The therapists working with the bike were very impressed at the flexibility in my hips, knees, and especially ankles. They noted that being injured for this long and having such great joints shows that I've had excellent care over the years.

I can fully agree that I have been blessed with great caregivers that at first put up with my parents being particularly about stretching and exercises and now me. Taking four times a day to do my stretches can seem like a lot, but this week confirmed it has been worth it. God has been gracious in His care for me through these people and it is something I can't emphasize enough.

Tuesday, July 14, 2015

Working Legs

In my life, I've been blessed to be surrounded by people that help me do things I enjoy. For many years, I served as a counselor at CHAMP Camp and have loved working with the kids. Giving talks at grade schools for the past decade, and recently colleges, is also a great break from programming web sites.

On occasion, I get do something extra like trying out the zip line at camp last year and going to the Creation Museum a few weeks ago. Monday was something all these combined, and still has me grinning thinking about it.

A lot has changed in rehab technology since my injury three decades ago. One addition is something called an FES (Functional Electrical Stimulation) bike. It's similar in practice to my diaphragm pacemaker in that it uses electric pulses to stimulate muscles. In this case, electrodes are part on my legs, and other areas. to stimulate the muscles to pedal a stationary bicycle. Other, younger, quads I work with use this system, so I thought I would give it a try. It took getting a new bone density test, but my doctor approved for me to try it.

Getting setup for the first time took quite a bit of arranging, but I was able to stay in my chair, just with the leg rests removed. The PT got to know me quite well in placing the electrodes on my legs and lower back. After some final tweaking, everything was set.

The first two minutes were completely done by the machine turning the pedals and my legs just along for the ride. It felt great to have my legs actually moving in unison with each other and going through the cycling motion. After the warm up, it was a combination of motor and my own muscles doing the pedaling.

Initially, my one leg spasmed a fare amount, but not bad enough to stop the process. The next 15 minutes was something I don't ever remember feeling of my legs actually pedaling. We tried going with just my own muscles, but that didn't work for more than just a few seconds. Afterward, my legs, and arms, were calmer than they have been in years. Nine hours later, they were still very loose compared to normal.

One of the technicians said that repeated use will help improve circulation, and aid healing my wounds, and improve my muscle and bone density. Ideally, I should do weekly, or get my own and pedal 3-5 times a week. I would love to be able to do that, but weekly trips to Des Moines take a lot of time as well as gas and vehicle use. However, the system costs $14,000 and may not be covered by insurance.

I'm scheduled to go again next week and I can't wait for the appointment to come. God has given us very unique tools to help with paralyzed bodies and I'm glad I can use this one at least a few times, and try to keep from grinning.

Tuesday, July 7, 2015

Independent Dependent

We just celebrated Independence Day when the US became its own nation. A lot of time has passed since becoming a free nation and there has been a lot done in these centuries.

Programs like social security, Medicaid, and Medicare have helped people to live more independently than they could without. With having so much time I have to give for normal living, working full-time would be very difficult. Laying flat for multiple hours a day doesn't allow work to be done very easily. Last month, I worked over 21 hours for paid web development as well as multiple hours volunteer work and some speaking. It often felt like every minute of sit time was spent working. I have done full-time work before, 40 hours a week, but there's no way my body could handle it anymore.

Medicaid is what is currently allowing me to stay out of a care facility. For many years, I barely used it for anything. However, I'm thankful that I was able to fall back on it with last year's insurance changes. For others like me, it fully covers living in a nursing home and covers needs such as ventilators and wheelchairs. It only allows the bare minimum, but it's better than laying on the floor unable to breathe. Unfortunately, both programs also have their problems.

For social security and Medicaid, I have to have very little income or funds to my name. With a limit of $2,000 in total financial accounts, savings are impossible. I am allowed to have a fund for burial expenses, but only as long as I can't access it while I'm alive. Since I can't get life insurance, they tend to like clients that breathe independently, I'm thankful I can at least save in that way.

However, if I was able to get full-time, or even regular part-time, work, I would not be allowed to earn more than $2,000 per month. Some states do have programs around this, but I am not aware of one in Iowa. You therefore become dependent on this programs for daily living. Without them, even earning a regular full-time wage, I could never afford medical expenses. It might be possible with a six-figure income, but it would still be a challenge. It would be quite a change to go from basically no income to a hefty salary as well.

With our current system, it makes me partially independent from family and friends for basic needs, but dependent on it as well. Living the quad life can be a challenge from many angles. We'll see what God has in store for the coming week.

Tuesday, June 30, 2015

Desentitized

A few weeks ago, the movie Jurassic World was released. It is a continuation of the Jurassic Park series released several years ago. I have not watched it, but the previews and reviews I've read sound similar to the previous releases. Everything starts out as planned with a dinosaur theme park and ends with half the cast eaten.

One commentary I read was titled Desensitized to Death and talks about seeing death in these types of movies and not blinking an eye. Yes, it's a movie and none of what is being seen is real. I have watched the previous three movies, and others portraying murder, and had the same reaction of just blindly watching the action. Again, I know it's not real, but should we feel some sort of reaction?

For the past several years, one of my web clients has been a funeral home. I have posted funerals for stillborn babies and young children to people that lived over 100 years, and everything in between. With these, I feel sorry for the family that has lost a loved one and I am glad I can help by telling the world about the person. It's also a regular reminder of the what each one of us has in store. What really matters is what happens after we leave our physical bodies.

This is the key part to what we have become desensitized to, a person's eternity. Did the person believe in the Lord Jesus as their savior and believe in Him? Did we, as those around him or her, do all that we could to tell them about this good news and forgiveness of our sins? This is another area we have become desensitized to in our modern world.

When someone uses God's name irreverently, few people bat an eye whether it be in person or on a screen. Other areas such as lying to cover up something or supporting theft by watching or listening to pirated movies or music online are also something fairly routine. I am guilty of supporting some of this as well as not correcting someone when I see or hear God's name taken in vain.

We need to wake up to these things and start caring about them appropriately. No matter if you're living the quad life or not, we all have responsibility to live for God. May we take what time we have to be active and live according to His will.

Wednesday, June 24, 2015

Creation Camp Visit

Back in the cold days of February, I applied to volunteer as a counselor at CHAMP Camp 2015. A lot of kids applied to be campers as well, over 30, which requires a lot of counselors. Unfortunately, since I take up three beds with my caregivers and I; their wasn't enough room for me to be able to attend. So, we decided to take a vacation anyway during the same time period.

For several years, I have wanted to visit the Creation Museum near Cincinnati, OH. We left early Friday morning and arrived that evening and spent the weekend at the museum. On Saturday, we started by going through the main hall and the seven C's of history, creation to the cross and consummation. I have studied a lot of the associated material for a few years, but was glad to see it all come to life. This took the entire morning and we were then off to more areas.

After lunch, our group watched the film Men in White in the special effects theater. In the regular seating, patrons had vibrating seats and a mist of water to go along with the show. I fortunately parked off to the side of where I should have and stayed nice and dry. Next up was a presentation on carnivorous plants.

In 2009, I took online classes in creation apologetics through Answers in Genesis and became friends with the instructor. Ron was also the presenter for Cursed Plants so we finally got to meet in person after being online friends for these years. He did very well in his presentation and kept the interest of a wide age range. I hope to get up to his level of speaking in my talks.

Sunday morning started out with watching trains and returning to the museum after noon. It was a nice day to see the gardens, dinosaur sculptures, a zonkey, zorse, and more. We ended the tour by watching The Last Adam, about Christ's sacrifice on the cross and resurrection. I liked being able to go to the Creation Museum and seeing the world presented through God's Word as it should. More museums in the country should take note of the excellent presentations and how everything in the world tells of the Creator's handiwork.

Monday was visit day at CHAMP Camp, so we packed up from Kentucky and stopped for a few hours near Indianapolis. Another friend from online, who's son is a quadriplegic, met us at camp and I was able to show them around. It would be great if he, and I, could be at camp next year, but we'll see what God's plans are for then.

I miss not being at camp and working with the kids, but I'm also glad to see so many being able to come. It was a busy four-day weekend and a lot of work for my parents, especially my dad. I'm very thankful for their care and that God has so greatly blessed this quad life He has given me.

Tuesday, June 16, 2015

Work Woes

It seems like the last few weeks have been going from one deadline to the next. I finished rebuilding a site a few weeks ago, but it keeps coming up with minor errors that need work. Since some of them can have a negative impact on their income, I try to get them solved as quickly as possible.

At the beginning of the month, I started reworking a long-time client to a slightly new design, but using a content management system (CMS) instead of basic HTML and a web editor as I've been using. I'm much further behind than I should be at this point and everything I do doesn't make progress. With every wasted hour of little to no progress, I feel more and more like I'm in over my head.

The primary language I'm using is CSS (Cascading Style Sheets) and it is a primary language in web programming that I have used for years and I know quite well. For some reason though, I'm not finding the right spots in the CMS to edit and I just keep chasing code again and again. I'm working with CMS software more and more, but large projects like these last two really challenge me.

If I didn't have deadlines, it wouldn't be as frustrating. However, then my laziness wins through and I don't work nearly as much as I should. Just thinking briefly, I have three projects I would like to get to, but just haven't. In fact, I should be using my valuable sitting time to be working instead of blogging! With less than 15 minutes before my night nurse comes, and due to frustration, I've lost my work attitude for the night.

For other items, I'm also starting to listen to pastor's sermons as part of being on my church's search committee. Our pastor's last day is June 28, so it's quickly approaching and we're nowhere near ready to call a replacement. As if I wasn't already busy, I also signed up to be a peer mentor with the Christopher and Dana Reeve Paralysis Resource Center. I took a couple hours of online training late last week (mainly while flat) and have a live training for several hours next week Wednesday.

It's best to be active and busy, right? I'm hoping this schedule calms down before fall and the school talks start up as well as more church activities. I wonder what all I would get myself into if I had control of more than just my head? For now, it's time for sleep and then back to the busy quad life.

Monday, June 8, 2015

Saturday Cancellations

For about the entire week, I had planned on going rail fanning (watching trains) this past Saturday. The weather prediction looked good for being out and my day assistant was scheduled to come. Not only that, but I was going to have a guest.

A couple months ago I found out one of the boys I work with at church likes trains. Most parents gladly take free offers to lose a kid for a few hours, so we had it all arranged for him to come. All week I was planning what to do with my apprentice and let him have a fun day. Unfortunately, none of it happened.

After returning from an appointment in Des Moines Thursday, my caregiver started doing my regular afternoon routine. However, my body decided I needed a restroom faster than usual. The problem escalated overnight and all day Friday. There was no way I could drive an hour from home and be outside for several hours. The surgery two weeks ago was supposed to have fixed the problem, but apparently not.

Hopefully another time will work out. I would love the chance to pass on rail knowledge and pretend to be a parent for a few hours. The weather man says we should have a cool summer, so I hope he's right. I did at least get out and take a roll on the bike path by the dam near town. Another rail fan I follow on YouTube also posted a few videos from Saturday. One of them is posted below.

The other Saturday development is with my night nurse. Despite running five miles a day, she experienced heart trouble and will be off for a couple months. At least she only did one night a week, but the agency couldn't cover the shift. With more time to search, the next few months should be easier to cover.

In the quad life, uncooperative bodies aren't always fun to deal with. Through the years I have learned to be thankful when plans do work and make the best of it when not. I'm praying that my body will start behaving again and current plans will become reality. We will see what the week brings.


Wednesday, June 3, 2015

Time

Time is something that is dependent on where you are and what's happening. When reading the Bible, there are several instances when visitors, or even angels, come to someone's house/tent to visit. The host would kill the fattened calf, bake bread without yeast, and serve a meal. I can't imagine that happening today.

If we don't get our lunch within a few minutes, we don't want it. Waiting a few hours to kill and prepare meat and bread is something we wouldn't do today, at least in the US. Part of the factor also has to do with occupation. The people I'm thinking of today are business people or some other profession. This situation calls for quick meals and getting back to work. Shepherds and farmers can be a different story.

Sheep don't tend to move a lot, so shepherds have a lot of down time. I imagine taking a few hours to cook and talk with travelers would be a welcome relief. Age and activity can be another determining factor in how time passes.

I have noticed those in the mid to upper 60's see a year as a very short amount of time. One of my caregivers who is in this age group talks about Christmas in January. Granted, a year isn't real long, but a lot can happen in that time period. For kids, one-year can be a sizable chunk of their entire life so far.

For me, time goes quickly while I'm sitting and slowly while laying flat. It does go a bit quicker if I doze off though. Whatever time describes in your life, make sure to spend it wisely. At some instance, our time will be up and the years of a quad life, or any life, will have been completed. Spending that time for a purpose is the key.

Wednesday, May 27, 2015

Celebrate

Last week I had the opportunity to celebrate a birthday with a friend. He is a fellow vent dependent quadriplegic and has had to live in a nursing home for the past 14 years. Some friends from a local
church came as well and we had a nice little group.

Being well into my adult years, birthdays aren't anything to momentous. However, it is nice to get cards and birthday wishes from friends and family. I can't imagine having nobody around me to recognize the day. Unfortunately, it seems to come with living in a nursing home.

Earlier this week we celebrated Memorial Day. It is great to recognize those that have served and died to protect us. We enjoy many more freedoms than other countries and are very fortunate to have them. It sometimes seems, to me, though that we are quick to help other countries,
but not necessarily defend those that need help in the US.

We have made great strides in the last 25 years for rights of those with disabilities. However, if someone has the crime of no private insurance or family assistance, you are forced to live in a facility. That somewhat sounds like a jail sentence with no possibility of parole or getting out early for good behavior.

Fortunately, places do exist that will take us and we aren't completely shunned from society as some places. Living the quad life has a lot of challenges, and it's great to be able to celebrate milestones. One day, I look forward to celebrating in a new body in fully restored paradise.

Tuesday, May 19, 2015

Surgery

For most people, having a surgery is a an unfamiliar, somewhat scary, event to occur. This isn't a bad thing in that it's not needed to correct a problem. For me, that's not the case.

I had a minor surgery done this morning. It was to get rid of a bladder stone and correct other problems in the plumbing. As soon as I rolled up to the counter to check in, the receptionist met me like an old friend and already knew my name. In the family waiting area, the main volunteer that gives updates knows my parents on site and doesn't need to ask for my name.

When I added today's procedure to my list of records, it came to surgery number 23. For some quads, this is a low number, but it's still a good amount. With familiarity, and not being able to feel below my head, I actually have fun with these little outings.

Unless it's an extreme emergency, you have mountains of questions and paperwork to go through for every procedure. That means I often get nurses that have never seen me before and are new to my jokes, needs, and abilities. The diaphragm pacemaker system is a novel to doctor and nurse alike and therefore gets explained about a dozen times. I don't bother with telling my meds anymore and just give them a printout of my current list. Anesthesia is where the real fun comes in play.

Just after getting rolled into the OR the doctor says what mix of drugs he'll be giving. He makes it sound like he's some sort of server in a restaurant, "Today we'll be starting with med A and mix it with a hint of drug b." As they start to get in your system the room seems to slightly warm up and it's interesting to hear how slow your speech becomes. The next instant you're in a recovery room with none of the same people nearby.

For me, my mind is fully awake, even if my body doesn't care to be, so I get to play. After one procedure, a person in the bed next to me was being asked to move their arm, make a fist, etc. So every time the other nurse said, "Can you move...," I would shake my head no. It took a bit for my parents to catch on, but they eventually figured it out.

Another regular part of the quad life is in the books for next time. It's an odd way to have fun, but it's hopefully for the better.

Wednesday, May 13, 2015

Learning Opportunities

The past couple weeks have had a few of the unexpected times occur, but I prefer to look at them as learning opportunities. If we learn from new experiences, then they will hopefully not happen again.

Shiley trachLast week Wednesday, about 2:30 in the morning, my night nurse was doing the normal routine of turning me and cleaning around the trach. First, the plugin for my DPS came out of its holder when she turned me. So, she woke me up while the wires were quickly unplugged, put back in place, and plugged in again. About a minute later, she is cleaning around the trach when the outside supports that hold it in place crack in half (top section in picture, photo sourced from Hopkins medicine). In my 30 years of have a trach, this was a first for me.

With the DPS, I can breathe perfectly fine without having my trach in, but it's good to keep in for clearing out my lungs and backup for using a vent. So, with one hand holding the broken trach in place, my night nurse uses the other to get everything together to change to another one. It was a good bit of acrobatics, but she managed it very well. When I'm due for a trach change next week, I'll be switching to a newer model. Hopefully it won't have the same trouble.

Yesterday I spoke at a local college, one class of EMS students and another of PTA (Physical Therapy Assistant) students. These were both first time events, but I think they went well. For the EMS class I had them identify what they need to do to get me out of my chair and what to take with me. The second class was looking at equipment I use and to make sure to talk to the person. Hopefully these will become annual visits and I can help more future medical professionals.

Just before I started writing, my day nurse for tomorrow called in sick. I'm scheduled for an evaluation for a new chair, so it looks like dad will be taking off work to take me. I'm thankful for parents that are willing to help me, but it's a common part of the quad life. More learning experiences will come, both planned and unexpected.

Tuesday, May 5, 2015

Depresion and Anxiety Week

This week is set aside to educate and help with depression and anxiety. These are major problems in the US with both those with no physical limitations and especially with difficulties.

One of the biggest hurdles for people with new spinal cord injuries (SCI) is going out in public. Not even large crowds, just getting out at all. A person using a wheelchair in public isn't very common, and we attract a lot of looks. It's especially true for higher level injuries requiring a chin controlled chair and ventilator. Some onlookers are just curious, like kids, while others are anywhere from amazed to annoyed.

With this common reaction, it's very hard for new injuries to get used to. For me, it's just a normal part of life and I just say hi or smile back. However, the more I'm out, and become a regular site, I start to blend in with the crowd. Unfortunately, that can take a long time and never completely happens. Other areas for anxiety can be getting use to a ventilator, having someone else help for all activities, and more. Anxiety can also lead to depression.

Depression in people with high, or any, SCI level is common, both at initial injury and throughout life. Losing the ability to care for yourself and relying on others is a big adjustment, especially if the person was active. I have had problems with this as well when I let the problems in the quad life get to me. There was a point once that I worked on getting my mechanical breathing discontinued. Fortunately, after a lot of prayers and searching Scripture, God brought my thinking as it should be for the life I've been given.

Overcoming these struggles is different for everyone. Some may need to seek counseling or just work with others in similar situations. For me, staying active and doing various activities is a great motivation. When I lose a client, it is very tough for me, but I'm working on seeing from the other person's point of view.

No matter what life you've been given, the tempter finds ways to get under our skin and disrupt correct thinking. If needed, don't feel ashamed to ask for help. The quad life is very challenging, but does allow for serving God in many ways.

Monday, April 27, 2015

Living

I was talking with a fellow quad friend on Facebook a few days ago and the topic of living situations came up. That brought up memories of everything that was going on last year at this time.

Looking at nursing homes and not knowing from one month to the next where I would be living was a very challenging time. I'm glad that we are past it, but it's not the case for others in my situation.

The man I was talking with last week has lost his father, has few nursing hours, and his mother is his primary caregiver. Another gets nursing hours during the day, when he sleeps, and is up at night while relatives sleep nearby and he wakes them as needed. Still another friend has been forced to live in a nursing home for the past 14 years and is only in his early 40's.

Part of the funding for my caregivers is through the state and requires a lot of paperwork. My mom does pretty much all of it and spends about 20 hours per week on it alone. She was wanting to get out and take flower pictures the last few days, but end of month paperwork and other needs have kept her from being able to go.

The blessings I'm surrounded by are sometimes easy to forget, which is why I try to stop and think sometimes. I am in no way better or more deserving than anyone else and I wish others were able to have more ability to be active and live normal schedules.

In these past three decades I've been given more blessings than I can count. I would love to be able to help others more, but don't know the best way that can happen. Political channels are possible avenues, but the most recent changes have mainly had negative consequences and positive ones are few and far between.

This quad life I've been given isn't easy, but I have more than I can ask for. In your life, be sure to stop and count your blessings and thank those around you that help to make them happen. Ultimately, thank the giver of life and what He has done for you until next week and every week.

Monday, April 20, 2015

Looking Up

Recently, I have been watching a couple videos taken by NASA. The more I watch, I can't help to think what a tiny insignificant speck we are in God's creation. The first video is of the sun taken over a five-year period. This is followed by a very detailed picture of our nearest galactic neighbor.



Even with all this, God calls us to be His own, made in His image. Looking up and seeing the heavens declare the glory of God. Knowing that God cares for the quad life I've been given along with every person on earth is truly humbling.

Monday, April 13, 2015

While Parents are Away

My parents try to take a vacation or two per year just on their own. It takes some work to arrange someone to help me on the evenings and weekend, but we usually get it arranged with rearranging caregiver schedules and having grandmas come. Mom and dad took off last Thursday and plan to be back Friday. That means I have the house to myself, at least in a manner of speaking.

Saturday afternoon I was part of a radio interview. It was a national internet based radio that the participants, and hosts, just simply call in. We talked about life as a quadriplegic and the advantages if going sans footwear. The conversation then went to places that require shoes even for wheelchair uses. It was a fun half hour that I may need to do again. Today was a little more exciting.

About 9:30 the doorbell rang, so my assistant went to answer it. I could hear her talking with someone, but could only pick up part of the conversation. Pretty soon I could hear her say, "Well, he's back here in bed." A male voice answered, "Is he awake?" I listened to footsteps come down the hall and in walks a policeman.

He did well at not looking too surprised at seeing a man sitting in bed running a computer with a mouth stick. Apparently someone called the local redemption center and left a message of disgust about their hours. The cop said the message was quite colorful in language and the caller ID said my name. I assured him it wasn't me and that our caller ID has my father's name. I also couldn't help with anyone else I knew that shares my name. Our visitor left with that and I managed to stay out of jail. Hopefully that will be it for such visits.

For six of the eight evenings, my grandmothers are helping out. So far, they've been giving my ice cream desserts every night. By next week, I think I'll need to practice self breathing to get some exercise!

If I can manage to stay out of trouble with the law, the rest of the week should go well. However, you never know what to expect in the quad life.

Sunday, April 5, 2015

Instinct

We have all inherited certain characteristics from our parents that are natural for all people. Some of them are rather odd when you're a quadriplegic.

As we grow older, we generally pick up after ourselves and if something drops, we either catch it or pick it up off the floor. When I see something fall in the corner of my eye, my head twitches in the same direction as if to try and catch it. That sounds logical, but not when you stop and think about it. What am I going to do about it? Will I throw myself on the floor and attempt to catch the object in my mouth? It might be fun to try, but I don't see it happening.

The broken bones that would come as a result of falling out of my bed or chair should be a deterrent enough. Also, no only will the item need picked up, but me as well! Something else we inherited from our original parents is the sin nature, and a conscience, knowing right from wrong.

Today we celebrate Easter, the resurrection of the Lord Jesus from the dead. With God's sacrifice of his Son, we can be forgiven of our sins and have everlasting life with Him. Our conscience tells us it's wrong to lie, steal, and commit adultery or lust after another person. Despite knowing they are wrong, these, and more, are things we as sinful humans consistently do in some form or another.

Whether you're living the quad life or not, every knee will bow and every tongue confess that Jesus is Lord (Romans 14:11). God's punishment for sin is Hell where adulterers, thieves, and those who sin God will have eternal punishment (1 Corinthians 6:9-10). Take the free gift offered on Calvary 2000 years ago and turn from sins.

As descendents of Adam and Eve, we all have certain instincts, not all of which were originally given. I pray that today you celebrated that gift, or will realize before it's too late the need for that forgiveness.

Tuesday, March 31, 2015

DerTainment

It has been over a year now that I have been doing my up and down routine. I'm usually sitting up in bed by 8:00 in the morning and then flat again at 10:00. I once again go up at noon and two hours later flatten out. At 4:30, I again up until we finish supper about 6:30. Finally at 8:30 in the evening I sit for the final time of the day before "going to bed."

My Minecraft pad
While flat I can work on my computer some, but not with enough precision, or vision, for work. Therefore, in the morning down time, I either play a game or watch something. I much prefer to be at least somewhat active, but after playing Minecraft or Farming Simulator for two hours, my mouth and trach are yelling at me loudly with pain. In the afternoon I often read, and evening is same as morning. For a lot of these times though, I've been watching a gaming group called TebbyBear Broadcasting, and especially the co-founder who goes by Der Tebbers.

Der plays several simulator games on his YouTube channel that I either have, currently do, or would be interested in playing. It's not as fun as actually playing them, but it does help to make the time pass. He also makes the videos entertaining. I might be a quadriplegic due to the car I was in getting hit by a semi; but it's still fun to watch a truck fly all over the road and end up anywhere it wants.

For three to four days of the week, Der also does live shows on Twitch. They correspond very well with my evening down time, so I often watch them. When I'm laying flat, it's a challenge to be able to do chat, but it's still something to help pass the time. I also can't see what I'm writing when I do interact with the audience, so I try to be careful what I say.

Thankfully, the skin problems do continue to show improvement. It may only be one cell per week, but it is the right direction. I'm very thankful that I can at least do some while flat, but appreciate my sitting time. Hopefully a time will come when I can actually work more and be upright longer. Until then, my quad life continues with its ups and downs.

Thursday, March 26, 2015

Crowded

After World War II, many soldiers came home and started families. Everyone is likely familiar with the baby boom generation and hearing various reports about this generation. Now that the majority are at or over retirement age, medical needs start to increase. I've been noticing this for a few years, but it's really starting be obvious.

For about the last month, let's say I've been having plumbing issues. I've talked with my doctor's nurse a few times and we've adjusted my meds, equipment, and schedules. This has helped, but problems still exist. Therefore, we concluded it's time for an actual visit.

When I called on Monday to setup an appointment, the earliest I could see my doctor, a specialist, was August! This sets off a scenario in my head:

Me: "Hey doc, I'm having some major problems and need to come in to see you."

Doc: "I agree, I'll schedule an appointment for you in five months. If you're still alive, I'll see you then. If not, be sure to cancel so someone else can take the time slot."

Fortunately, there is a nurse practitioner I can see next week, but this is getting nuts. The doctor's office has a waiting room about half the size of my house and it's often 75%-80% filled. Maybe with the aging population, more services will become available, but that could be a while. My schedule isn't much better though.

Yesterday, I was supposed to have been in a meeting at church. Unfortunately, the group leader couldn't come due to recovery from a surgery. It took about a dozen emails to find an evening next week that I'm free as well as a majority of the group. I'm also working on lining up some college speaking visits this spring and attempting to find open days.

You would think that since I'm living the quad life and have a minor annoyance of a body I can't control may result in an open schedule. I am better than some people, but it does get to be tricky. We'll see what time becomes available for next week's post.

Tuesday, March 17, 2015

St. Patrick Tournament

Last week was basketball tournament week in Iowa. Therefore, I had to endure sports stuff when the regular news stories were on. Apparently there were some close games and the sportscaster showed a room full of people yelling and screaming and acting in obscene manors.

I have absolutely no interest whatsoever in sports of any kind. If a petition came up to ban sports, I would be the first to sign it and gladly work to promote it. Watching these people last week is a confirmation of my position.

What was the point of all the obnoxious yelling and screaming? Did a new medical breakthrough get announced to cure cancer, Alzheimer's, or spinal cord injuries? Did someone show the many problems with evolution and admit the Bible is God's word? Those are things to cheer about, but this was just some game that has no lasting impact on anything.

Close anyway, the coaches likely got large bonuses for taking students away from academics. In another few months, the insanity will start again. The previous year's celebrations won't matter and it goes from year to year. Some of these people can likely tell you a bunch of statistics about different people on the team. I wonder if this same person could give any information on the statistics of St. Patrick's day.

We're nearing the end of the day when a lot of people drink green beer and wear green clothes. It's fun to celebrate a holiday, but it's also good to know who we're celebrating it for. St. Patrick was started out life as a slave, and was basically an atheist. Through his time of labor, he learned to love the Lord and became an ordained bishop. He then went back to Ireland and started many churches and baptized 120,000 people.

This day we celebrate was to commemorate his death on March 17, 461. That is a reason to celebrate and give thanks. If you're one that gets into the whole sports thing, remember to keep your perspective. Be careful to cheer for the things in this lifetime that actually matter, whether you live the quad life or not.

Tuesday, March 10, 2015

Tanto

I read an analogy once by a paraplegic. He concluded that down to about mid-chest he was himself, below that was some guy he had no control over named Ervine. I liked the idea and applied it to my own life. Since my other half is constantly crossing his legs Indian style, I gave him the name Tanto.

This leaves me with control of my head, mostly, and Tanto with pretty much everything else. When I talk to older kids and adults, it works as a good illustration as to what everyday life is like. I can see everything below my head, but can't control any of it.

Every day I watch Tanto kick, slap, grope, and pinch those trying to take care of me. I do have ways of keeping him under control, but they only go so far. One of my assistants has taken the idea a step farther and named every limb. It can get somewhat comical talking to different limbs telling them to behave. However, they rarely listen since I keep control of the ears.

Living in a body I can't feel or control gets to be very frustrating some days. Having fun with the situation can greatly help to make light of what can be taken as a complete negative.

Throughout my life, I hear every now and then about breakthroughs in spinal cord injury research toward a cure. I honestly don't believe that will happen in my life, at least not for old timers like me. I do look forward to the day when I will be finished with this body and be fully restored in glory. Until that day, I just continue to live the quad life as given.

Monday, March 2, 2015

Hardware

When I talk to school kids, I tell them I can't control my body, but I use adaptive devices to do things. I then describe some of my devices, like wheelchair, diaphragm pacemaker system (DPS), mouthstick, etc. In 30 years of living the quad life, I've gone through a lot of hardware.

The most obvious piece is my wheelchair. I've heard some people get new chairs about every five years; I'm on my second powerchair. I can't imagine having gone through six chairs by now. My first one had a mind of its own and took off by itself a few times. I've had my current one since about
1996 and it has served me very well. Neither chair would have lasted nearly this long without maintenance from my dad.

Two weeks ago, we were getting ready for church when my chin control wouldn't swing away. Within a few minutes he found the broken wire under the front of my seat and had it repaired. We were off again and got to church with time to spare. The external hardware is rather obvious, but it's the internal parts that are just as useful.

In early high school, I had severe scoliosis (common for young kids with SCI) and had an 89° curve in my back. After getting rods in my back, I grew six inches in seven hours and went down to a 30° curve. The DPS with wires in my diaphragm allows me to breathe more naturally. Followed by my trache that I used for many years for breathing and still do to clear out my lungs.

I'm thankful that God has given us technology that allows people with injuries like mine to live, and go out and interact in the world. It's a major problem when they malfunction, but fortunately that isn't often. Living the quad life isn't easy, but through the many adaptive devices I use, it makes it possible to do more than people imagine.