Monday, September 29, 2014

Tough Days

There are times that you go from the top to the bottom, and the past few days have been tough, and good as well. Last week, my parents went on vacation for a few days, so I had the house to myself, with my assistants. I didn't do much out of the ordinary, but we all got a break for a short while.

Unfortunately, I learned Friday that I lost another client. I had this particular site for nine years, and considered the head manager a friend. I see her almost weekly at church and enjoyed working with her. However, a few months ago she decided the site needed a redesign and since I was struggling with insurance issues, she went with a competitor. So the last two months, when I've been wanting work and having next to none, I could have been building a new site. Instead, she decided to choose a time when I was struggling to take more work away.

My parents returned home Saturday, and dad was saying he wished he could leave in another week again and go on a hiking trip. However, I have things for church a couple nights, since we're short on hours and he didn't plan, he can't go due to me needing help. Dad has said before he feels like he's in jail because he can't do what he wants, and I feel like I'm the warden.

With everything that has gone on this year, I'm still not certain if I should be trying to stay home. My parents would be free to come and go as they wished and I wouldn't need to worry about making sure everyone gets enough hours in. Being able to work would be nice, but I still have a few clients that I could get a couple hours of work per month.

In October, my calendar is full of sticky notes of activities I have scheduled. Four grade schools I'm speaking at as well as a couple classes of nursing students. For the first time in a few years, I'm also planning to go see a movie in a theater, A Matter of Faith.

Days of joy and happiness are not guaranteed as a Christian, more the opposite actually. I can be thankful when good times come, and learn to trust in God's plan, no matter what, when bad days come.

Tuesday, September 23, 2014

Botox

When most people think of Botox, images of celebrities getting rid of wrinkles come to mind. While this is one use of it, there are other ways it's used.

My Diaphragm Pacemaker System (DPS) has an external box that makes the system work. It connects to a port on my right side, just below my ribs, that goes to the implanted wires that cause me to breathe. This is all fine and good, until something hits the plug on my side. A frequent culprit for this action is my right arm during a muscle spasm.

The spasms are pretty well controlled through other means for the rest of my body, but my arm coming in contact with the plug can, and has, have major problems. I keep a pillow between my arm and side most of the time, but this doesn't always work. That's where Botox comes into the picture.

Botox blocks the nerve signals from getting to muscles. When used for cosmetic purposes, a few CC's are injected to relax the muscles and reduce wrinkles. In the case of controlling muscle spasms, a much larger dose is given, I had 700 CC's injected in the muscles in my right arm six weeks ago.

Using Botox for spasms is common, but it takes six weeks to reach its full potential and needs subsequent booster shots every three months. Since my treatment, I've noticed a great help in reduction of movement in my arm. The times it does vibrate it mainly goes out, not in towards the plug. I can't say I notice any wrinkles in it either.

Sometimes in the quad life you need solutions to unique problems, this is one of the solutions. Continuing to breathe with the DPS with a calmer arm is a great feeling. We'll see what comes next in the quad life.

Monday, September 15, 2014

Movie Review

The number of movies and TV shows I've watched this year has increased substantially compared to previous years. While laying flat on my back, or on my side, it's the easiest thing to do. I have watched a variety of shows on YouTube, UK/US/Australia border security, air crash investigations, and many others, and some through my Netflix subscription. I thought I would take this week's entry to review a couple of them.

First, I'll take a sort of documentary on YouTube produced by Living Waters called Noah and the Last Days. It's about half an hour long and interviews several people on the street about Noah and the end times. I can't say that I disagree with them in their argument, several of the signs of the end times are apparent.

As I've said before, people are turning away from God and Christianity and are calling evil good and good evil. Those that think Biblically are said to be backwards and believing in pseudo-science. Also if anyone speaks out against gay marriage they are said to be hateful and not accepting of others' views.

While I agree with much of what is said, I don't think we're at the end times, yet. Unfortunately, I believe it will get much worse, for Christians especially, as the end comes. I do recommend taking the time to watch the show, it does give food for thought and how to approach people in ways I hadn't considered. The other productions by Living Waters, also on YouTube, are also recommended.

Second on the review list is the feature length film God's Not Dead by Pure Flix. I watched this last week via NetFlix DVD rental. This movie was recommended by a caregiver and was interesting to watch. In this movie, a man is just starting college and is asked to deny God's existence in a philosophy class. He takes the unpopular side and decides to defend his faith in class.

I agree with the main theme of the movie, to boldly stand for your faith and not merely take the easiest path. Going to college can be a tough time for a young Christian man or woman and their faith will be tested, even in some colleges claiming to be Christian.

Unfortunately, the movie takes the stance of God directed evolution and the Big Bang. During his three arguments, our student does use some good points, but with a wrong basis. At the end, his last argument could be shot down by just a few different questions. This is a good film to see how to boldly stand for Christ, but still needs work on the foundation.

We'll see what the next week brings in the Quad Life.

Sunday, September 7, 2014

Month of SCI

Several months of the year have been dedicated to raising awareness for some cause or condition. September is Spinal Cord Injury (SCI) awareness month.

I can easily say that Christopher Reeve has done the most of anyone to raise awareness about SCI. After his injury, the work he did on research and improving quality of life still has impact today, nearly ten years after his death. According to the Christopher Reeve Association, there are about 6 million people with paralysis. That's about 1 in every 50, which means that most people know someone with a SCI or related condition. However, it's still relatively unknown and misunderstood of what's involved.

Injury level is of course a very large determining factor on a person's needs and abilities. It can go from needing complete care including mechanical ventilation, like me, down to having some trouble walking. I have worked with parents of a boy with an injury like mine who initially thought he would be confined to a bed for the rest of his life. I also had a doctor's receptionist think the same in advising that the office was under construction and didn't know if they could fit my bed in through the doorways. Fortunately, with the change in ventilators since the iron lung, that is not the case.

As anyone who reads this blog knows I do a lot in the community, from bed and chair. I am a web developer for multiple businesses and organizations, at my church I'm a deacon, newsletter editor, prayer coordinator, and Cadet counselor. I also give disability awareness talks at schools, and have volunteered as a camp counselor for many years. As I tell the school kids, just because you can't move, or breathe, doesn't mean you can't do things. Many other people with SCIs have families and work full-time jobs to support them. However, as I've discussed here, the life of SCI is not easy.

With a high injury like mine, you are very dependent on other people for help. As I type this, I would normally be at church just before evening service starts. Unfortunately, my dad has been ill today and unable to take us to church. The big topic for me this year has been funding trouble with insurance not wanting to cover my caregivers. It often seems like the life of SCI is one battle after another, especially with funding. It's unfortunate that their are also many secondary problems like pressure sores and infections. I know several people that had SCI and are no longer living, mostly younger and with less time injured than me.

The ultimate reason for SCI and any other debilitating condition is living in a sin cursed world. At the end of creation week, called everything "very good." However, SCI and its affects are not very good. As a result of Adam and Eve's sin, the world is deteriorating, along with mankind. The ultimate cure for all ailments will come with a new heaven and new earth, where there will no longer be any more pain or suffering. Until then, we live the lives God has given us, no matter what our abilities.

Monday, September 1, 2014

Labor Day 2014

Today is the day of labor, the time every pregnant woman looks forward to. Well, maybe that's a different subject.

This year has felt like a labor of different sort for me with all the work of trying to keep funding for my caregivers and stay at home. My actual labor of web development continues to be on the slow side, but that's not bad.

In laboring to keep my body in good shape and down to the appropriate number of holes, I continue to spend a lot of time flat. I got to thinking the other day, and realized I only sit for a total of around six hours a day. It's no wonder that even short jobs for VMT seem to take a lot longer than they should. Yesterday dad said that he noticed the one wound is half the size it used to be, so working to be off the back side is helping.

Friday afternoon, we learned that the funding that was set to expire yesterday has now also been extended to January. However, we don't know anything beyond that. Due to this, I've been working on scheduling my school talks this fall instead of spring as usual. It will be different doing them early in he year, but it may work out better. If funding does continue beyond January, maybe I can try for more schools at my normal time. Before that time though, I need to continue to work on new insurance that is more affordable and will cover my needs. If that is even a possibility will remain to be seen.

We read in Colossians 3:17, "Whatever you do in word or in deed, do it all in the name of the Lord Jesus..." As this labor day ends and I look toward changing seasons, activities, and regular life changes, I need to keep this in mind and work toward the final goal.

Monday, August 25, 2014

Fails

Some weeks, everything goes right, but others are just the opposite. Last week seemed to be a lot of the latter.

After over four years of work and waiting, my new chair arrived last Tuesday. Unfortunately, we should have left it in the crate. It didn't have several of the items it was supposed to, won't fit me, and a long list of problems. After a little investigation, I also found out the base was purchase in 2009 by a company in Florida. The on switch is missing, so I can't tell how many miles it has driven, but it has definitely traveled the country.

I also had a miscommunication with a client a couple weeks ago and I ended up overwriting changes they had made. Last week was spent getting the original changes online again along with the changes I made. Now we're working to get everything correct on the client's computer again so they can continue doing updates. Normally, I'm able to get updates complete for clients within one business day, but not last week.

With the catching up on the one client and still being flat a lot, I let an update request get buried in my email. It was two days later when the client reminded me of it that I finally got it online. I'm supposed to be trying to get more clients so I can help with insurance expenses, not lose current ones because of poor management. Mom also said that if I can't get on my own insurance with nursing coverage in January that I'll need to just go to Medicaid and see what we can do. That will very possibly mean a care facility. With the negative, their also was some positive.

Tuesday also had an interview with a potential new client. If they decide to go with me, it should be a fun site to work on. I also started back into Spanish after more than a year off. I've wanted to for a couple months, but finally took the initiative and did it.

Other than warm, this new week has potential to go either direction. We'll see what it brings by the next post.

Monday, August 18, 2014

SCI Knowledge

Last week I said that I have been noticing fewer intrigued looks when I'm out in places like the state fair. That is the case, but this past week has had more of a twist on that.

We were given a few free tickets to the fair after our initial visit, so dad and I went up again late Wednesday afternoon. The evening crowds are generally much smaller than the day and it makes for easier viewing of displays, and shorter food lines. After eating a hard-broiled egg that one egg exhibit was handing out, we stopped by a greenery display so dad could stop and help feed me ice cream (did I mention the Iowa State Fair is known for food?). A mother and, I'm assuming, son sat nearby us for a rest and to wait on other kids.

A short time later, the boy started asking me questions, why was I in a chair and how did I drive it. Very typical questions from a kid, but it had been a while since anyone had approached me in public with questions. After finding something for supper, dad and I wondered over to where my uncle was stationed on the fairgrounds selling farm equipment and a grill called the green egg. We sampled some pizza that had just come off of an egg and the son of my uncle's coworker walked around trying to see what he could do for entertainment. Sure enough, after I had been there a few minutes, he asks about how I drive my chair.

Both of these boys looked to be around the age I speak to at schools, so a couple quick questions were easy to answer, but the public wasn't finished. Thursday, I had an afternoon doctor's appointment in Iowa City, so my assistant and I left early to get lunch somewhere. We arrived in town with plenty of spare time, so in a rare event, we both got out of the van and went into the restaurant to eat. We're usually pressed for time to either get to the appointment or get home, so we normally go through the drive-up window and eat in the parking lot.

My inexperience showed as I initially went to the wrong end of the line. As the person built the sandwich I normally order at this popular sub shop, I actually had to think about choices of what to put on. Most of the time, often on weekends, mom and I give our order to dad and he returns with our sandwiches. Actually seeing the choices and knowing what to have was a nice change. Shortly after the sandwich build, we were at the designated wheelchair table munching on flattened bread. A few minutes later, a mom with three young girls sits in the booth adjoining ours.

The middle girl, probably around age five, asks her mom to see why I'm in a wheelchair. As best I could in a booth I gave a very brief history and wheelchair demo. In two days, I had more questions in public that I've probably had in a few years.

People with spinal cord injuries (SCI) are becoming more common in my area. A young man of 15 was injured this spring and came home to a neighboring town a few weeks ago. While he was at rehab near Denver, they met another family from my town whose son had just been injured. He is scheduled to return home later this week. Both of these injuries are fortunately lower levels than mine with one having some arm control and the other at least partial leg control. What the short- and long-term future is for these two will remain to be seen. In any case, kids will have more opportunity to ask questions and learn about the quad life.