Sunday, November 10, 2019

Independence Week

Last week's entry was just prior to my parents' departure for the week. It has been an interesting time with both good, and bad, along the way.

With my caregivers changing, I had a few shifts with people that either don't come frequently or just started. One evening, with two of these helpers back to back, I started feeling uneasy and went through training situations in my head. I remembered having the same scenario frequently when I lived on my own in college. However, God saw me through those times as well as this week without trouble.

Thursday, I had my final college class for the year. It had been scheduled for the previous week, but got delayed due to snow. It was a cold morning, but the EMS students were great with excellent interaction and everything went well. All that was left were two appointments in the Des Moines area on Friday.

First, my regular checkup with  my pulmonalogist. My wheelchair has a feature that when I tilt the seat beyond a certain point, it locks out the drive option. When I go more upright again, the drive function is restored. It has been acting up a little the last few weeks, but nothing major. However, as I sat up in the van in the doctor's parking lot, the drive function on my chair wouldn't unlock. With cold breeze blowing in, I tilted again, sat, turned my chair on/off, but no luck. Finally, after several minutes of repeating the process, I was allowed to drive again.

The appointment went well, and I was soon at a library at another Des Moines suburb. I was selected to join a task force to check that people with disabilities in Iowa are living as independently as possible. I had joined one meeting by phone, but this was my first time in person, if I could get inside.

My chair once again wouldn't allow me to drive to exit the van. However, it eventually relented again and let me get into the building. I was joining late, but found a parking spot among the attendees. Lunch break finally came and I joined the line to the pizza. With one small bump, my drive option was again locked out and it wouldn't return. The other committee members with mobility aides navigated around me, but eventually my assistant had to push all my 500 lbs back to my place.

As I sat listening to the meeting, my helper stepped out to call the wheelchair company I use. All technicians were busy though, and won't be able to help until Wednesday. When the day was complete, I had to get pushed onto the van lift, into my spot, and then the reverse when we returned home.

Such is the quad life some days. I'm very thankful for having caregivers both new and experienced that are able to go with the flow. I was at least able to manage without my parents needing to assist. This week may primarily be from in bed, but I'll wait and see what comes.

Sunday, November 3, 2019

Late Vacation

My parents like to get away and go on trips to various locations around the U.S. and sometimes into Canada. They usually go out in early fall, but weren't able to due to my nursing shortage. However, they are planning to leave later today for a few days away.

With October having so many open nights, we didn't know what to expect for November. Mom was determined to take a trip though, so we planned ahead to get evenings covered with someone that could stay with me. If nothing else, my parents thought they could at least do multiple one-day trips around Iowa and be home for the night shift.

A few weeks ago, my nursing agency's scheduler contacted me. A nurse who helped a few times several years ago would be available just for November. He worked well to my memory, so he had a refresher night Friday and worked last night. That means I only have two nights with nobody scheduled and my parents can be gone most of this week.

I'm thankful they will be able to get away for a few days and explore new areas. However, I'm also wondering how the week will go. For the last year, I've noticed I'm becoming more reliant on caregivers that can easily move me around. My grandparents and aunt do very well when they're here, but moving me around in bed isn't an option.

Either the bed, me, or both have changed that I need to be in an exact position in order to do much. If I'm not, my neck, trach button, and mouth start hurting. I have been thinking of ways to minimize movement in the evening so I can stay properly planted. I believe I have a plan, but I'll only find out with testing it.

In any case, it should be an interesting week in the quad life. I'll be using my Amazon Echo to remind me of household chores and try to keep track of groceries. I'm not fond of getting out in the predicted temps, but I hope they will increase as days get closer. As always, only time will tell what God has in store for another week.

Sunday, October 27, 2019

File Finds

Once upon a time, I dreamed of having a large office. Part of it would have large file drawers filled with important information for clients that I would regularly need to retrieve (yes, I'm odd). When mom was getting rid of a two drawer file several years ago, I quickly snatched it. My parents wondered why I needed it, but I thought it would be handy.

In the years since, my two-drawer file has held my tax information (not that I make enough to pay taxes), prescription information (which is mostly the same each month), nurse's paperwork, and much more. The majority of the paperwork has gone into their various folders, with appropriate labels, never to be touched again. That is, until this month.

With multiple nights without a nurse, mom thought we needed a project to help stay awake on our late nights. She has been in a cleaning kick lately, so my file drawer sounded like a good project. Each drawer is maybe three feet deep and almost completely stuffed with valuable (or not) information. Mom's mantra has been that you eat an elephant one bite at a time, so we took on the project in small chunks.

Living the quad life, I can't physically go through my own mail and paperwork. Therefore, I direct my caregivers to what I want done and it works well. Thankfully, I've had many assistants that have stayed for several years and I trust them completely. Therefore, some routine items, like reports from social security 2-3 times a month, just get filed without my needing to direct. Somewhere along the way, this has resulted in some interesting finds during our late night project.

Around 2005, I was looking at returning to college for my next degree. We found several college information pamphlets, including one letter that had never been opened, but was nicely filed away for over a decade. In my stored camp information, one find included my name filling an entire sheet of paper, with nothing else on it. I'm not sure why a black and white name tag from an unknown year needed to be archived, but it has now been refiled under recycle. Other treasures, such as paperwork for researching my diaphragm pacemaker, bring back memories of time and experiences I have been given.

After nine nights, only a portion of one drawer is complete. Moving forward, I think I need to be more observant with my filing system. However, it has been an interesting trip of discovery and remembering the path God has taken me on. Snow and slush is predicted for tomorrow, so I'm guessing I'll have more organizing time. I never know what will be found next, and may not want to either.

Sunday, October 20, 2019

Reaping what is Sown

It has been a difficult year for farmers in Iowa, but harvest has slowly started. Not everyone was able to plant last spring, but they are now gathering fields that were sown. The last few weeks, I have been watching story time (the news) on TV, reading emails, and observing life around me. Through this, I see the world is now reaping what was sown.

Since abortion was legalized in the U.S., over 60 million children have been killed prior to birth. In the 40 years this has been going on, I wonder how many of these kids would have now been married and had children, and even grandchildren, of their own. I don't know what the statistics would say, but the total number of people that are missing is much higher than 60 million.

About the same time of Roe vs. Wade, China implemented a law that a family could only have one child. After more than a generation has passed, China realized they are now facing a shortage in workers for factories, caring for elderly, and more. The rule was changed in 2018 to allow two offspring, but now that is under advisement as well.

Thankfully, America didn't have such a law, but I believe we're still facing similar results. Iowa, and the country, is experiencing a low unemployment rate. As a result, there are more job openings than people available to fill them. In my small town alone I am getting used to seeing regular signs advertising work available. That also includes my on-going need of finding more nurses to help cover time.

Unfortunately, this country doesn't seem to learn or pay attention. With increasing political campaigning, one party continues to push expanding abortion and even making it a right. On the opposite end of life, some countries are also expanding euthanasia allowances. If an adult, or even child, has some type of disability or depression, then they legally be killed by a doctor. It's becoming a common part of socialized (government-controlled) healthcare and also something candidates want to implement.

I know that living the quad life sometimes gives a unique perspective on life. However, it isn't something that only I have noticed. I'm thankful that God is in control, but I keep wondering what life was like before Noah's flood or when Israel was taken captive by Babylon. I pray we don't go that far, but will need to be vigilant through the weeks, months, and years ahead.

Sunday, October 13, 2019

Long Short Nights

At the end of June, I learned I would be losing my main night nurse. My initial thoughts went to how many nights would not be covered and all the extra work for my parents. August and September had several shifts open, but not as many as I feared. Unfortunately, this week has been the struggle I feared.

Since last Saturday, October 5, through tonight, only three nights have been covered. Tonight will be the third night in a row without a nurse. Thankfully, my main day assistant has come for a couple hours every evening to help with my night routine. This allows dad to get to bed earlier and get more sleep, but still less than normal and then he stays up half the night.

On Thursday, I had my annual meeting with my county DHS worker. This meeting was to make sure all my paperwork and documentation, that mom coordinates, is in order for the state of Iowa. The state then either approves, or denies, the multitude of exceptions I have that allow me to stay home. I was told that most plans like mine aren't being allowed. However, it's cheaper for the state to have me at home instead of a facility, so I should be approved.

The head supervisor of my nursing agency also comes to this annual gathering. He said they currently have about 140 openings for nurses. Due to regulations for nurse training, he said there are fewer people graduating college in the nursing field than are retiring. Therefore, the openings that are already nearly impossible to fill will only get worse.

A family I know in Florida has an eleven-year-old son with the same injury level, and care needs, as me. They have been without any night coverage for three months and his parents cover the time. They hardly ever get to spend time together, or much with their four other children, as a result. With the late nights, mom has been having increasing pain in her legs and other health issues.

Unfortunately, it's an increasingly common issue with the quad life, but their is hope. Last week, this family in Florida had a promising interview with a nurse and will hopefully get two nights a week covered. It isn't much, but anything helps. I keep reading and seeing messages how God answers prayer for those who ask Him. I know sometimes the answer is no, but I keep praying for some relief for my family, but also all those in similar situations.

A lot can change in a few day's time, so I will see what is in God's plan this week.

Sunday, October 6, 2019

Mr. Joel Returns

October started off busy with a doctor's appointment in Des Moines, monthly billing for web clients, and most importantly, speaking at two schools. I enjoy working with kids, but always wonder what will come out of their mouths.

Both schools have been on my visit schedule for several years. However, Thursday was two classes of second with two new teachers. I received very little communication from them in arranging my visit time, so I wasn't sure what to expect. The school secretary was friendly and opened the door for me as she has for years. I didn't know which class I was visiting first, so she helped me find one of the teachers while the students were at recess.

Finding one of them, I introduced myself and my assistant and wondered where to setup. The instructor said the two classes would be joining to hear my presentation all at once. This was news to me, but I've learned over the years to roll with the changes. A few minutes later, a total of 28 kids were all listening to Mr. Joel, most anyway.

It was tricky driving around legs as one class filled a carpeted area in-front of the room, but I stayed clear of everyone. After watching a couple videos and doing my regular routine, the class seemed to listen well and had good questions.

Friday found me at another school with a combined 3rd and 4th grade class totaling ten students. This was a familiar teacher as well and she had shown my school videos a few days earlier. As a result, the kids had prepared a few questions before I came, 34 unique questions. With these older students, they had thought out everything a little more carefully and it was an excellent few days that I enjoyed.

Later this month, I'm scheduled for two more grade schools and a college class. As I was afraid would happen, I don't have a night nurse before either of the younger students. It could get fun working with a room full of 7-8 year olds and little sleep.

I'm thankful I was able to share the quad life with these young minds and I enjoy it every year. I pray God will allow me to continue beyond this fall, but I will wait to see His plan.

Sunday, September 29, 2019

End of SCI Awareness

September was spinal cord injury (SCI) awareness month. I followed the example of a friend and posted something about SCI every day on my Facebook page. It has been a fun and rewarding exercise.

I tried to limit myself to three paragraphs of information and start out with general information before talking about my own experience. With writing here every week, I'm used to having more space, but I was able to stay in my self-imposed rules. It helped that I made a list of 30 points in August so I didn't have to think of a topic. I knew what was coming next, could allude to it, and somewhat plan what to write in my head.

A few people said they enjoyed the updates and learned a few pointers. Some days received a lot of feedback with others hardly getting any interaction. If I had several days in a row with little interaction, it started getting frustrating, but I somewhat expected it for certain topics.

In the over 34 years I have lived with my injury, I have seen a lot of change. Technology has greatly improved for therapy, independence, and the ability to connect with other families. Having a certain month designated to raise awareness of it also helps, but I can't say I heard any mention in regular news channels.

With tomorrow's conclusion, it will be nice not trying to remember to do an update. However, it has felt good to more actively teach about the life I've been given and have more interaction with friends, even though it's just virtual.

During all this, I had eight shifts missed in September, only four were scheduled. I had to cancel two meetings I was scheduled to attend and had more trouble with my pressure areas. These are normal parts of the quad life, but I only barely mentioned them.

October will be another challenging month with nine shifts already scheduled to be open. Winter weather and illness looks early this year, so that number could raise. I'm increasingly thankful for the coverage God has provided through all these years and keep praying relief will come soon.