Sunday, January 23, 2022

Progress to Come?

A lot can change in a week, and this one made progress toward getting more help. I won't have every open shift filled, but anything helps.

One of the schools I contacted had a student reply that she was interested in helping me. I looked at her resume and gave a few of my quad life videos that show some of what I do. I liked what I saw and watching my cares online didn't scare her off, I interviewed the student last week. Now, she is scheduled to come in a few days to start training.

It has been over two years since I last trained anyone, and that was a different situation. The new caregiver was a home care nurse already and had several year's experience. He was also trained by my other night nurse who has worked with me for nearly two decades. Sara is the one who usually trains day and evening caregivers, but she is still out on leave.

Any nurse with experience will say home care is much different than working in a facility. For example, I reuse equipment that hospitals normally use once and throw away. One common item are med cups. I'm the only one using them and I take the same medications almost every time. Therefore, I use a cup, it goes through my cleaning solution, and then back on the shelf for another round.

When teaching how I do everything, I'll need to remember to emphasize school will say to do some things completely opposite of what I do. However, this will hopefully be an excellent learning opportunity to gain experience and work with different technology. To my knowledge, their are only a handful of people in Iowa that use a diaphragm pacemaker. I'm excited to have the opportunity to teach and get more help, but also pray I don't lead her astray somehow.

Due to class schedules, the future nurse can only do one full day and one afternoon a week and only until school finishes in May. That will be another 15 hours per week covered out of the 30 that's missing and will be a big help in the quad life. I'm thankful for God's blessings and pray everything goes well with showing my care routine. I also pray her paperwork with the state will also be complete before summer break. I will see what comes for the next few months and give thanks for what I have.

Sunday, January 16, 2022

More snow that must go

It's winter and I'm in Iowa, that means cold temperatures and snow. We have not had record amounts like some areas, but we are still receiving a good amount.

As predicted, snow started falling early Friday morning and continued for most of the day into Saturday morning. My Friday night nurse called off early in the day due to projected snow totals and road conditions. Since she drives quite a distance, so my parents and I expected that would happen.

Therefore, after nobody to help during the day, mom and I stayed up until about 2:30 Saturday morning. Dad then took over after getting a good five hours of sleep and got me ready for bed. He then started my morning routine a little after 8:00 and immediately went to clear snow after he was finished with me. Dad spent all of Saturday morning, and more, taking care of snow around the house and then at work.

It is nice watching snow through webcams in other areas, and even out my window, but I don't like when dad gets stuck with continues work. While I was up Friday night into Saturday morning, I watched a documentary called "The forgotten children of Ukraine." It covered children with a wide variety of disabilities that were given up by their parents and put into orphanages.

The conditions and medical "care" they received were horrible, even with an orphanage director that worked to help them. When children became adults, if they survived that long, they just went to other institutions and never out in society. One wealthy individual was trying to help a few people escape the system who appeared to not have any physical or cognitive challenges.

I'm very thankful for the parents God has given me as well as living in a country that does help people with disabilities, even if not as we would always prefer. I pray for these children in the video and saw a few comments that some of them had been adopted and were doing better.

Whatever challenges come this week in the quad life, I will remember try to always remember to give thanks in all circumstances. I am also looking forward to spring, which comes closer every passing second.

Sunday, January 9, 2022

Not what was hoped

For over a month, my parents and I have been anxiously waiting for January 6 to come. It was when Sara had her doctor's appointment and could hopefully get released to come back to work. Unfortunately, she didn't get the news everyone wanted.

In order to be cautious, Sara's doctor wants to wait longer. She has a few weeks of therapy and then another test scheduled for sometime in April. If it is that long until Sara can return, that will mean six months without having regular coverage.

So far, it has been over two months since I last had a week of day shifts covered. The three of us are getting through, but it is getting more difficult as time increases. I realize this has been a common theme in several posts and it may be a little annoying, but it's the primary thing going on right now.

Normally, I would be starting to contact schools to get scheduled to come in spring. However, without knowing caregiver status, I don't think I can contact many. Also, my parents have trips that they want to start planning, but can't for the same reason.

Sara is hoping to contact her doctor again after therapy and see about returning earlier. With colleges back after Christmas break, I also contacted a couple local schools with nursing programs. I at least received responses from the department chairs I messaged, which is better than when I ask about coming to speak. I don't know if any students will be interested, or could actually help during the day, but I pray someone will be available.

I have also started thinking a lot about looking at nursing homes. It would hopefully only be temporary, but I could see potential of losing at least one of my night nurses if it was more than a month. In that case, it may become a permanent move.

Whatever comes, I keep reminding myself God is in control. My family has been very blessed to have so much help that has allowed us to be very active. We are now in a season where God is allowing us to trust Him and what He will provide. 

With well over three decades of the quad life, I have had times that appeared to be dire and ended up very good. If nothing else, whatever happens in this life is like a blink of an eye compared to eternity. I will see what another week brings and continue to pray for further assistance and for Sara's health to improve.

Sunday, January 2, 2022

Looking Back at the Year Past

Just a week ago I was posting about Christmas and now the new year has already started. These are times good for reflection as well as looking forward to what may come.

In 2021, I had my record number of times preaching. I remember early in the year that I was wondering how much I could do with lock downs uncertain. I'm thankful that I had the opportunity and I pray that I will be able to preach more this year as well. However, I may be a little more selective depending on my responsibilities for the service and how many I do in a row.

The second record for the year is one that pretty well only I would care about, but it is still noteworthy. Thanks to the COVID lock downs from 2020 spilling over to the next year, I didn't get out to church in person or hardly out at all in the winter. Combined with a warmer spring, 2021 was the first full calendar year I went completely barefoot.

When cold weather comes, I dread having to put on footwear and endure the increased muscle spasms and frequently getting stuck, unable to move, while my neck is stiff and I can't move. If I can continue to only go out on warmish days, I'll reach two years of being free from footwear in late February. I definitely still have spasms and stiffness when barefoot, but anything I can do to decrease them without more medication is a good thing.

An unfortunate record was the most open nursing shifts that I can remember. Except for one day, it has now been two full months since Sara has been able to work. My other day caregiver took a few extra shifts, but three days a week have mainly just been my parents. Sara has an appointment late this week and I pray she is able to return on at least a limited basis.

This year has started off with a sudden switch to snow and bitter cold with today's church service cancelled two days ago. New Year's Eve had no night nurse, but thankfully she was able to cover last night.

I don't know what God has in store for the quad life this year, but I know it will be according to His plan. I hope to continue to post here every week and keep track of what has been happening. Have a great first week of 2022!

Sunday, December 26, 2021

Pre-Christmas Truckiing

It's not a secret that I don't get out much and interact with friends or the public in general. I have a few times a year I specifically go for gospel outreach and of course preaching. Beyond that, my social life is pretty limited. That's not uncommon for quadriplegics, but it also leads to unique interactions with people.

Starting in high school, my friend John and I played games together online. Sometimes we were in the same room and other times half a country apart. We had fun no matter the location and could chat together as friends do. When John's kids arrived, his family responsibilities took precedence and we have only played online games together a few times since. However, I haven't completely stopped socializing this way.

At least 4-5 times a week, I watch a gamer on Twitch that goes by DerTebbers. I have talked about him before as I usually enjoy what he, or his wife DasTebbers, are playing. He also has a number of other gamers that are friends and play similar content. One of the games they play is American Truck Simulator, a game I also enjoy.

Taking a rest for real world needs
Recent updates to the simulator have made it possible to join with other truckers and have a convoy. On Christmas Eve, Der invited fans to truck with him and his friends delivering virtual Christmas presents. I joined in on the convoy and drove along with them.

This was the third time I have joined a convoy with Der and his friends. They are aware I drive with a mouth stick and are patient when my truck gets behind the group. However, the friends are able to chat together through another program I don't use, so it isn't quite as social as John and I used to be.

I am the only Christian in the group, which makes me both hesitant and excited for opportunities to join. For one, I look for opportunity to share the Bible and the gospel where possible. The majority of the conversations are clean, but they sometimes use God's name in vain. It gives an opportunity to speak, but also to be careful not to get influenced incorrectly. Even though I don't much chance to talk in the group, I also try to observe speed limits and traffic signs as an example.

Living the quad life does make for unique interaction with the public. I'm thankful for what I can do and try to use the opportunities for good. As we head into a new year, I pray I can continue to be active and be used for positive influence.

Sunday, December 19, 2021

It's almost Christmas?

It isn't very often I let time get away from me. I live a very scheduled life with certain needs happening at basically the same time every day. My sitting and laying schedule revolves around the medical cares and I know about how much I can do in a certain time period. I try to plan ahead days, or weeks, at a time and pay attention to special events.  Even with this, it doesn't seem like Christmas is less than a week away.

This past Wednesday, Iowa had new record highs in the low 70's. With the warm weather, several tornadoes formed along with high winds throughout the day. This sounds more like a typical day in late spring, not the final week of fall. In general, December has been a relatively warm month and doesn't feel like it should be Christmas. I think I could easily adapt to living further south where high temps are normal for this time of year, but I don't. I think that's part of why it doesn't feel like Christmas, but not all.

With my parents already doing extra work in helping me, they didn't do much for Christmas decorations. I have my regular train tree and lights in my windows, but that's about it. My parents and I are also at the stage of life that we have minimal, if any, Christmas list. It's more often the case of saying, "Here is a link, this would be good for Christmas." It's also the case that if we need something, we usually just get it and not wait.

Sara and I usually listen to a Christian radio station in the morning while she gets me ready. With her gone, I haven't been doing that often. However, I have started to some and have some of my own Christmas library playing while I type this entry.

Ready or not, Christmas will be here in just a few days. In the same way, Jesus will return again before some people expect, whether we are ready or not. Whatever is going on in life at any time of year, let us never forget to always be prepared and to come to God with sincere repentance while we can. The true gift of Christmas doesn't come in a wrapped box, but as a baby in a manger.

Merry Christmas!

Sunday, December 12, 2021

Nose Job

For nearly two years, I have had trouble at night with my nose getting clogged and having a hard time breathing. My Ear Nose and Throat doctor (ENT) said it would take extensive surgery to correct the problem. Therefore, I have been using nose strips and just trying to deal with it. Unfortunately, I started getting allergic reactions to the strips' adhesive and had to stop using it.

My long-time ENT also left his practice and went on to do volunteer work in other countries. When I met my new doctor, I talked with him about the problem and he said it was a simple procedure done in the office. Since I can actually feel my nose, I hesitated about getting work done, but was tired of not sleeping at night. Therefore, I made an appointment for the last Monday in November.

Dad took me to Des Moines and after getting to the procedure room, two bad tasting and smelling liquids were squirted up my nose to numb it. Sponges were also shoved in to provide further numbing and I was left to sit and wait. As the liquids did their job, I increasingly lost feeling from my sinuses on down my throat. I then remembered I had yet to take my noon medications and quick tried to before I couldn't swallow. The attempt resulted in a lot of choking and wondering what I was doing to myself, but it worked.

One final shot, via needle inside my nose, was given for full numbing before the procedure began. As this liquid reached my stomach, my chest started quivering and shaking as the doctor said, "Ready?" I had him wait until the pulsating stopped, but then he put various instruments up my nostrils explaining as he went. At one point, as he warned, I heard the cartilage in my nose popping as he applied pressure. However, it was finally finished.

Tomorrow will be two weeks since I had this done and my breathing is almost worse than before. For several days last week, I was very stuffy and needed suctioning several times a day. My throat was also sore from the irritation and I had trouble talking. It has thankfully improved, but I'm still wondering if I made the right choice.

The doctor said it will take a few weeks for swelling to decrease and notice improvement. I hope he's right. Just when I think I've experienced everything in the quad life, something new comes up. I look forward to easier breathing at night eventually, but hope I don't need to wait until Christmas.