Sunday, January 26, 2020

Finding more Archives

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

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

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

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

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

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

Sunday, January 19, 2020

Less is Good, Maybe

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

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

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

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

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

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

Sunday, January 12, 2020

Trusting in 2020

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

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

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

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

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

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

Sunday, January 5, 2020

Looking at 2019 Results

Now that 2019 has come to a close, I wandered how I did with social media reach. It was the first year I tried both blogging and vlogging (video version of this). I somewhat knew what I would find, but was still surprised.

Since you are reading this (hopefully), I'll start with blog statistics. The top five most viewed 2019 posts were:

Reaping what is Sown: 51

Most of these blog entries receive around 20 or more views, like the picture shows. It is a little lower than I would like, but it does well enough. I know my weekly musings aren't that interesting, so it's what I would expect. What really surprised me though, were the numbers on my vlog.

With just one year and no advertising (not that I promote this very often either), I still had some high view counts. The top five videos from the year were:

-->Looking at these numbers, I'm much more popular with my strange looks and voice rather than just typing. Apparently a lot of people are also interested in what I do to get up every day.
I have been given many years in the quad life, and I am glad to help educate anyone or help others living in similar circumstances. Those are my main goals with these ventures and I have had a few comments saying what I've shown, or written, are helpful.

With another year, I don't know what God has planned for this life. Whatever comes though, I pray I can spread the gospel and help others through life along the way. Thank you for my readers as well for coming by regularly to see what has gone on each week.

Sunday, December 29, 2019

Christmas Week Gatherings

With Christmas, it often means getting together with extended family that you don't get to see. I had two parties this week with each side of the family. Dad's side was mainly just with his siblings, but mom's side was with everyone.

Part of family gatherings is talking and getting caught up on the last year. This is where I can sometimes feel awkward at social settings. First, I have a tendency to "graze" conversations in crowds. I don't concentrate on one and instead hear several around me and add to each one at different points.

Second, I'm not always sure what to talk about or have anything to add. Yes, I blog every week and generally find something to write about, but it's a different setting. Most of my cousins are married and have kids. Their conversations are mainly related to family activities and work. I'm a bachelor that frequently spends all day in bed watching YouTube. It can be hard to relate sometimes.

However, I'm glad that I'm able to see my family and hear what everybody has been doing. With the way the quad life was going a few months ago, I wondered if I would be in a nursing home by now. Now that I'm down to just grandmothers, it may not be many years until full family functions completely stop.

Looking back on 2019, it has been an interesting. With losing a primary nurse, a tooth, then my grandfather's passing, it was a challenge. Relying on God though, I'm thankful He has brought me through to this point. I know the year ahead will be troubling in the political world and likely Christian tolerance as well. If I get to participate in another Christmas next year, they could make for good talking points.

Have a great new year and remember to give thanks for each day, and year, God has blessed us to have!

Sunday, December 22, 2019

Christmas Crunch Time

Sometimes in life, it seems you just keep getting behind and nothing moves forward. This week has been one of those times, and it isn't slowing down.

In early December, I agreed to preach for the final church service of the year on December 29. I didn't have a message prepared, but thought I had a fairly quiet month and could do it. Now with a week to go, I have a sermon written out, but no notes, PowerPoint prompts, or familiarity with what I'm saying.

Since 2007, I have also done a yearly review type of Christmas letter. As of this moment, it's only partially started, let alone finished. Part of this year has included funding trouble with my day assistants. Everything is in place, but hours that were worked in October have yet to be paid to some of my caregivers.

My mom and DHS supervisor have been trying to get it straightened out, only to meet with frustration. On Friday, I was told some of the problems should be fixed, but wait 60 days to resubmit paperwork. That means it would be four months after my caregivers worked until they were paid. Understandably, they aren't happy with this and want to look for work elsewhere. That's only October, November is still uncertain as well.

Therefore, I've started working on a letter to Iowa Medicaid in an attempt to rectify the issue. In addition, I have a church newsletter to do and an infrequent web client needs help and some research done. I'm also due to get a video out on my vlog if I stay on schedule.

Living the quad life does not mean you can't be active. Getting my mouth worked on a few weeks ago was the domino that started everything to fall. This is the first writing I've done flat since then and will likely not be the last.

No matter what gets finished when, I'm looking forward to another Christmas. The creator of the universe came as a humble baby born in a manger. This true meaning of the season can easily be forgotten in the busyness around us, but needs to be ahead of everything. Take time to pause this week and have a Merry Christmas!

Sunday, December 15, 2019

All I Want for Christmas

Six months ago, in late June, I had a tooth removed due to it absorbing itself. Since then, I've been dealing with a gap in the front of my lower jaw. It took time to get used to using my mouth stick again, but I have been making due.

This past Monday, I had another dentist appointment to finally get an implant to replace the tooth, or so I thought. My regular day nurse wasn't feeling well, so dad took off work to drive me the 1.5 hours to Iowa City. After we finally arrived and I was called back to the office, the staff realized I use a wheelchair and would not be transferring to their seat.

Apparently only one room is equipped with a chair that can move, so it took another 20 minutes to wait for that space to be available. During this wait, I realized I wouldn't be getting my prosthetic tooth, just an anchor for it.

As far as my feeling is concerned, my entire body is my head. That means any type of touch, or pain, is enhanced more that most people. I think the dentist got slightly annoyed at my request for plenty of Novacain, but my mouth is something I feel very well. After over 30 minutes of drilling into my jaw bone, I had a new metal anchor embedded in the gap.

Leaving the dentist is always a challenge though with not being able to feel my numbed chin. I thankfully succeeded to not hit anything and get back in the van. However, dad and I learned it snowed while we were inside and on the way home encountered several vehicles in the ditch. The road was fine for us, but I'm thankful he was able to take the time to bring me.

This week has once again been slowly getting back into using my stick. My list of tasks to complete keeps growing while I sit and watch YouTube, but it is improving. Now, in another three months, I should finally get my tooth replaced. I'm looking forward to being able to use my entire mouth again.

The quad life has challenges, but I'm glad to have access to funding for dentistry and its benefits. I'm also thankful God has allowed me to continue to work, even at a slower pace.