Tuesday, December 30, 2014
In the beginning, God made everything, including people, perfect and said that it was very good. Unfortunately, our first parents, Adam and Eve, disobeyed God's command and brought sin into the world. Tonight I'll be reading the first recorded murder in history, showing how bad man has become.
Throughout 2014, I've seen the bad side of man. Insurance people not caring if I have care and continue to breath and others twisting words to fit what they want to say. Among this, I've also seen the good in others. Friends helping to get insurance funding to continue and relatives putting forth a lot more financially and time commitment.
This past year has been one that has helped me grow closer in my trust of God's plan and relying on Him inn everything. I read a few days ago that the other insurance provider my dad's employer was considering is having financial trouble and members are being encouraged to go elsewhere. If we had tried to use it, we would be in even worse shape.
I do not know what will come in 2015, and I don't dare to try and guess. Each day has enough worry of its own, why try to look an entire year in advance. I do know to expect hard times and good times, and to rely on God through all of it.
The quad life of 2014 is nearly complete, now it's on to another year. We will see what the first week has in store next time.
Monday, December 22, 2014
I'll leave with two videos to watch. This first one is my favorite portrayal of the first Christmas, done by kids.
Second is a reminder of the gift we've been given, and what we must do in response to that gift.
Have a Merry Christmas everyone and we will see what comes next in the quad life.
Tuesday, December 16, 2014
Every morning I have a set routine of what I do to get going for the day. The schedule continues with being upright for a few hours, then down for a couple, lunch, and so on. Some of my nurses have been accused of copying their paperwork from previous shifts because nothing changes.
In many ways, this is a good thing, I know very well how to plan my day and it makes for easier training. About three years ago, I made a training book for my new nurses so they would have a written document to help them learn. Part of this manual is a daily schedule. Since I made it, only one item has needed to be adjusted.
All this sameness can lull a person into a sense of complacency. A holiday or appointment may break up the monotony, but life feels secure and routine. However, events sometimes occur that get us out of our routine and wake us up that life can change in an instant. That is what happened to me last night.
The nursing schedule changed due to someone being being ill, so the new caregiver worked last night, her third shift. Shortly after I finished my night scripture reading, we noticed my lower abdomen was moving kind of odd. It would start to expand as I took a breath, then the left side would suddenly bulge out. Somewhat like pushing on a balloon and one side bulges more than the other. I commented that she had a treat with something unusual to document. Unfortunately, it wasn't the only one.
About 1:45 in the morning I suddenly woke up. Junk from either my nose or lungs had collected in the back of my throat and I couldn't breathe. My pacemaker fired every four seconds to make my diaphragm contract, but nothing could get through. I could just barely start to clear my throat when the next breathe would initiate and plug everything up again.
My monitor that shows my heart rate and oxygen level started alarming that my oxygen was low and I couldn't speak. My caregiver noticed the commotion and came up beside my bed, but I couldn't tell her what to do. Thankfully, I was able to croak out to turn me on my back. As she did, the junk moved enough that I could clear my throat and start breathing again.
The entire incident maybe lasted a minute, but it felt longer and kept my heart rate up for quite a while. Shortly after, I went through what motion I do to indicate to take the plug off of my trache so I can breathe through it instead of my nose and mouth.
Just like in any life, something can happen in an instant that changes everything. Being dependent on mechanical ventilation for breathing, this is especially true. This lesson reminded me that you never know what will happen from one day to the next, it's all in God's plan. I am especially thankful I had a nurse with me that could respond immediately and help resolve the situation. That's it for this week in the quad life.
Tuesday, December 9, 2014
That gets displayed along the bottom of each page, along with the number of verses you've covered and other information. When you're typing, the page shows something like a speedometer that bounces up and down showing how fast you're going. I often get distracted by it and forget what I'm typing.
With an average of 31 WPM, I sometimes wonder what I'm at in other situations. Sometimes I feel like I'm closer to my maximum in these entries or emails, but other times much lower than my average. I'm still getting used to the bed with it moving frequently and having to adjust the keyboard as well. Spelling is my biggest problem on Scripture Typer though.
Any word that misspelled can't be entered, so you have to back it out and retype it, all while the timer keeps ticking. I used to do well at spelling, but thanks to auto correct on Microsoft Word and Mac, I'm definitely not very proficient any more. That last sentence alone required two word corrections.
After a busy Monday, this week looks pretty slow again. Highs in the 50's are predicted for the weekend though, so I'm hoping to get out to the tracks. That's all for this week in the quad life.
Wednesday, December 3, 2014
In talking with my nursing agency, they said they don't have any private insurance companies that pay for nursing for their clients. They all have state funded services or have moved to a care facility. Apparently staying with what I we currently have is the best option.
Due to this development, my parents are going to try and see if we can do another year of staying on our current plan. Hopefully we won't need to go through all the work this year required to get everything covered.
After I graduated from college in 2003, Voc Rehab hired a job developer to help me find a job. After a few months, he decided that no employer would hire me due to potential insurance costs. Therefore, I was given the number to several nursing homes and told not to look for work. Now over ten years later, it seems like insurance wants to do the same thing.
Thankfully, quadriplegics like myself aren't very common, but there are a lot of us out there. In public and in my school talks, kids and adults don't know how to work with someone like me and what we can do. I keep working to change this thinking, but it's a long uphill battle. This week though, I did get to see a result of this work.
Sunday morning, I was sitting in my regular spot before church service had started and one of the boys I work with in Cadets came up to me and wanted help finding his family. A quick scan of the crowd found them and I directed him in the correct direction. Most people would forget this account quickly, but for me it was a victory of sorts.
I've been working with this kid since late last year and in that time he has learned to see me as any other adult. In the case Sunday, as someone he can go to for help. This is a rarity with a lot of people with severe disabilities, but doesn't need to be.
Hopefully my quad life can continue to help others, but we'll see what God has in the plan for this life in 2015 and the next week.
Tuesday, November 25, 2014
No matter what circumstances someone is in, there is always some reason to give thanks. Life is often difficult fr various reasons, but we can be thankful for life itself and those around us. All the caregivers I have been blessed with throughout the life I've been given have helped me in every way possible and I'm thankful to have them. I'm especially thankful for the parents and family I've been given and all the help and frustrations they have gone through with me.
Despite days sometimes being too busy, I'm thankful for the work I've been given and the opportunities to go and speak. I'm also thankful for the volunteer activities I've been given both at church and the many years at CHAMP Camp.
There are groups that try to stop it, but I'm thankful for being able to freely, and openly, worship God in this country. I'm grateful for the ability to worship at church and study God's Word and study through multiple Christian organizations.
Even with all the trouble they've given my family this year, I'm thankful for funding that has allowed me to be home and active. I can be thankful that God has a plan for the life He has given me. I learned Monday that if I got my own insurance, it would not cover my needs, especially nursing.
My parents can't continue to pay so much to stay on my father's insurance; so we don't know what the future will look like. If I do have to go to a care facility, I'm thankful that there are a couple places in Iowa that may take me.
As you go through the next few days, be certain to stop and be thankful for what you have. No matter if you're living the quad life and have a body that doesn't work or some other circumstance, we can always give thanks.
Tuesday, November 18, 2014
Living in small town Iowa, nurses sometimes have to travel quite a ways to come and work with me. However, Judy actually lived close by and didn't have to drive very far. My nursing agency had wanted to shift her over to me from another client for a couple years, but it didn't work out until this summer. Judy has been doing very well with all my cares and has a great personality. Unfortunately, like many nurses, she is starting to get near retirement age.
The physical requirements of staying up and working nights have not gone well for Judy, and she has told the agency that she needs to go back to days. That means she'll be no longer working with me. Due to this development, another nurse was sent to train last night and is scheduled to come again tonight.
It's rare to find someone so quickly, so that was a good start. So far, she seems to be learning everything well and I hope that continues tonight. When she trained with Judy last night though, mom said the first question was how to get on days. Hopefully that won't be needed, but we'll see.
Caregivers through the nursing agencies seem to be hit or miss for how long they stay. I've had a few that stayed for several years, but others just a few months or weeks even. Getting used to a new person's mannerisms and how to work with them takes a while. With switching them up frequently, that gets to be a real challenge.
Hopefully this trainee will work and be able to come for several years. As with everything else, time and patience will tell. It's just a regular part of the quad life.
Monday, November 10, 2014
The first four books of the New Testament go through Jesus' time on earth and some of the miracles He did. The apostles were also enabled to do some as well. When the Holy Spirit was received by the apostles, and Paul, a number of miraculous healings are again recorded. In the two thousand years since then, I've been curious if some of these abilities have been passed down or if it was a one time thing.
Jesus said that if anyone has faith the size of a mustard seed, he can tell a mountain to throw itself into the sea. I haven't found any pesky mountains in my front yard lately, so I can't say I've wanted to move any. However, I believe mountains don't necessarily need to be made from dirt and rocks, they can be things that must be overcome in life.
My own personal thinking is that the power given to the early church following Christ's resurrection was a one-time thing. You occasionally hear about faith healers today, but any I've seen are in it for the money and could likely be labeled as more anti-Christs.
Having the ability to go out and boldly proclaim the gospel and back it up with miracles would be great to see. Really, people going out and just being bold for Christ and His word is great to see and hear these days. Unfortunately, I don't see these abilities returning until the return of Christ.
Just some random thoughts I've had the last few weeks. This coming week looks to be the first signs of winter, we'll see what comes by the next entry.
Monday, November 3, 2014
The insurance trouble this year helped for a few weeks, but that has only been about seven of the posts. A lot of days, and weeks, are pretty much the same, but I'm realizing I do more activities than I thought. There have been several weeks, like this one, that I have had no idea what to write about, but something has come up for an idea.
I am currently planning on continuing the schedule, but I have no idea what it will be from one week to the next. I have been busy for the last few weeks, so it may generate a few tales to tell. One of which was Friday.
This was my first time speaking to nursing students. I had two classes of about thirty students each. They were not the bouncy kids I'm used to, but it was still fun. These classes were first year nursing students, so everything was new to them.
Going over the changing technology in wheelchairs and going from the vent to the DPS was fun to share. I showed a few pictures and the zip line video from camp and a few looked like they may be interested. I'm hoping to be able to go to more classes at this school in the spring as well as another school or two. Maybe I can get a schedule going of grade schools in the fall and colleges in the spring. If web work is slow, that will give me a few things to do at least.
A bit of a program note that I don't get notification of comment posts. Therefore, I only see them when I'm here once a week. I'm not ignoring anyone, I just don't see the post. We'll see what comes up next week.
Monday, October 27, 2014
It was fine to about 35 MPH, then it would go into chugging fits until about 45. Dad did some research and realized he should have replaced the fuel filter several thousand miles ago, and figured that was the problem. One Saturday on the driveway he went to change it, but couldn't get it off. Going around my schedule, he managed to get it scheduled at the local Ford dealer. However, despite having it twice, they have yet to be able to replace the filter. With multiple hour-long trips to Des Moines for speaking engagements, it continued to get worse.
Then Saturday morning, the night nurse let mom know the toilet in the bathroom near mom had been spraying water. After a quick look at the tank, dad found a broken part. Mom had a few things she had to do and we didn't have a nurse, so dad and I again went to Des Moines. The van chugged up every hill and at various speed limits, but thankfully got us to our destinations. Two home improvement stores, one twice, supper and the return home thankfully went well.
Unfortunately, despite three boxes of parts, none would fit the stool. Therefore, the nurses have been either pouring water into the toilet to make it flush or use facilities further away in the house. Today's fix was to get a new porcelain throne that dad installed tonight. After much frustration though, a manufacturing defect became apparent and it will need to be replaced. During Saturday's trip, dad realized how bad the van is getting and hopes this week's fix repair appointment works.
At least through somewhat minor trials we can be thankful that all trips were successful in getting to points A and B, and C. The nurses are congenial to take a longer walk, or extra work, to use the restroom. Now as long as my antique wheelchair doesn't get added to the list, we'll be good until next week.
Monday, October 20, 2014
It seems that every few generations has an outbreak of a disease that ends up causing new breakthroughs in medicine. Polio was the most recent one that comes to mind. It was uncertain how it was spread and the effects of contracting it were serious. In the same way, new theories are coming up that Ebola may be spread through the air.
Fortunately, with polio a vaccine was developed that halted its spread. I can't say I've heard of it occurring in recent history. Hopefully Ebola will have similar results in the generation to come.
When an epidemic or crisis occurs, it seems that the regular rules for vaccine testing are relaxed to a great extent. I have an uncle with Parkinson's Disease (PD) and he has been waiting for a new medication to be approved for many years. Unfortunately, for my uncle and thousands of others with PD, the testing and approval process in the US is very slow. It is good to be careful when dealing with medications, but I sometimes think there's a little too much testing. When a drug has been proven affective and not to have major adverse reactions, it should be used. The last part is the tough one though since every medication has unintended consequences.
People have asked me before if I think I will ever walk again. A lot of progress has been made on SCI research, but I honestly don't believe I'll see a fix in my lifetime. If a scientist came out tomorrow saying that he found a solution, the proving and authorization time would likely take as long as I've been injured already. Plus, my bones and muscles are in bad shape after so many years of non use.
In the off chance a treatment or medication came through, it would depend on the situation if I would do it. If it was uncertain to work, and my going through with it would help someone else, then I may consider it. However, if it was a certain fix, and I may delay someone else from being helped, I would be last in line. One thing is certain though, I would NEVER use something like embryonic stem cells that cost another life. A few short years on earth is nothing compared to eternity and answering God on the decisions I made.
That's all I have for this week. We'll see what comes up next time.
Tuesday, October 14, 2014
This mattress had thousands of tiny holes that continually lost air, so it had a pump that ran continually to keep it inflated. I was very aware when the electricity went out, because I went flat quickly. In any case, I could easily sit in bed and do whatever I wanted and still have good pressure relief. With a few replacement cells, I've used the same mattress ever since high school.
Unfortunately, like a lot of my equipment, it is now no longer produced and I can't get replacement parts. A few months ago, we noticed my butt was really sinking in when I sat up. When I was flat, I resembled a hot dog in a blue bun, making it difficult to do my cares and attempt sleep. For the first time in more than a decade, it was time to get a new mattress.
The first one I received was two inches too long for my bed, so we started looking at what it would take to lengthen my bed. However, after further testing, we noticed the air mattress was not made for sitting, just laying, so it was back to the phone and supply company. The second attempt is now underneath me and working well, at least for now.
Unlike the old system, this one doesn't lose air, so the pump isn't constantly running. The new quiet in my room was nice, but has taken getting used to. The first day I had it my caregiver and I committed that it sounded we were speaking louder. The second major item is that the air continues to move while I'm sitting, or laying.
Every four minutes, the pump comes to life and adjusts the air in various places. At one point, my keyboard will be just right, a few seconds later I find it moving closer or further away and I need to adjust it. I would say it's a good change and should help with my current sores and hopefully reduce problems in the future. My keyboard is going away again, so we'll see what comes this week.
Monday, October 6, 2014
In some ways, this time of year is good with having more to do and being active. However, my tendency to want to stay home and on my computer wants to stay put as well. That's especially true as the temps get cooler. This week isn't supposed to be bad for October in Iowa, low 60's for highs most days, but it's a taste of what's to come.
My dad, another guy, and I have lead junior Cadets for three years now. This year, we just have second and third graders, the same kids as last year. Two have graduated from our group, so we're down to six this year. So far, they are easier to work with, noticeably better at reading and writing and just seem more grown-up. I know it has only been six months since our last meeting in March, but they do seem older. I know the feeling parents have that their kids grow up too fast.
Two kids we have had for the last two years, three years for one, are now in the older classes. I wish I could continue with them and continue to teach, but just as they move on, I have more to instruct in their place. This picture was taken on the night of our first meeting. We'll see how I'm looking in March if I'm able to continue that far.
The next entry will be during a calmer week, and I'll be looking forward to a rest.
Monday, September 29, 2014
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
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
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
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
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
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
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.
Monday, August 11, 2014
The attractions don't change much from one year to the next, but it's still always fun to go. One of the places I always go to is the Central Iowa Railroad Club's (video) train layout. They have a lot of well done modeling on their setup and it's fun to see the changes they've made. This year, a new attraction was a thirty foot tall American Gothic statue, which was painted in Iowa. You couldn't get a picture with someone at the base and tell who it was, or get a clear shot between all the people.
|One Man Band|
It used to be that I would see a lot of people, especially kids, looking at this intriguing site of a guy in a wheelchair. I still do get them, but not nearly as often as a few years ago. However, with aging baby boomers, the scooter population has also exploded in the past few years. It's very likely that the two are related, but it could be that the general public is just getting used to wheelchair uses.
After visiting mostly every building, watching the one man band, touring the machinery and livestock exhibits, it was a full day. Figuring out how to cover my assistant's time was an added challenge this year, but it was a nice outing in any case. It was also a great feeling to not have insurance worries overshadowing everything and just get out to enjoy the day. As summer begins to wind down, more days out will hopefully continue.
Monday, August 4, 2014
A few years ago, a friend wanted to get into regular Bible reading and maybe we would get the Bible read in a year. I did a little searching and found the reading plans at Bible Gateway. We looked over the options and picked one, but we were already behind starting in February. Simply reading two days' worth at a time would get us caught back up though.
Unfortunately, the busyness of life got to my friend's schedule too much and I lost my reading partner after a couple weeks. I didn't see a good reason not to continue, so I just keep going with online reading in the morning and the physical Bible before bed.
After the first year, I encouraged another friend to read along with me online and it proved to be a learning experience for both of us. We did different plans for three years until I took 2013 off to read daily articles by Answers in Genesis. However, I took up the morning reading routine at the beginning of this year.
My nightly reading started with Genesis 1:1 in early December 2013, with my morning reading doing the same on January 1. I have stayed about the same distance apart in my readings for several months, but my morning reading has been catching up to nights since June. It looks like this week, in the last half of Isiah, my morning plan will catch, and pass, my night schedule.
The NIV Bible was revised in I believe 2011, and that is the NIV that Bible Gateway uses. I don't like how some words are translated, so I switched to NKJV online. My Bible is the 1984 revision of the NIV, so it has been interesting comparing the translations. I also have a hard time concentrating when reading and my mind tends to wonder off. Going through an area again has been helpful for spots I missed as well. By next week, it looks like my morning will be in the lead, and we'll see what else comes up in the quad life.
Sunday, July 27, 2014
As soon as I say that I can already hear the voices, "Wait a second, you can't control or feel anything below your shoulders, you can't breathe on your own, you rely on help from someone for pretty much everything, and the easiest part is thanksgiving?" In short, the answer is a resounding yes. No, it isn't always easy, but with very little effort I can always think of something to be thankful for.
One easy one is the multitude of caregivers I have that help me with everything, especially my parents. We also are thankful for a partial answer to prayer Friday. Insurance will now be funding my night care through January 26, 2015. That still leaves daytime hours and figuring out cost for insurance, but it's a lot better than last week.
It has been slow lately, but I'm also thankful for the work I have through VMT. I know a lot of other quads that don't even have that much, so it is something to be glad about. Other items include living outside a care facility, being able to help others, being surrounded by caring friends and family, and many more.
This has been a week of giving thanks for many different occasions, we'll see what comes in the next one.
Monday, July 21, 2014
The Energizer bunny is said to keep going and going and going, I am not the Energizer bunny, I'm not pink. After all these months of working on one appeal after the next, keeping track of everything, looking at alternative funding sources, and alternative living places, my battery is nearly out. My family's fuzes are also getting short. Even if we do get insurance to fund my nursing, we can't afford to keep the plan. If I get my own plan, the whole mess could start over again.
Friends keep saying to contact the media or try this route or that route and this or that government person. They are very well meaning and only trying to help and I greatly appreciate the ideas.
|Sunset over the Lake|
Last week also was very nice weather in Iowa, and we were able to go out to the nearby dam, have a picnic, a take a short walk (a dam walk as I say). My wheels got covered in mulberries that required some scrubbing, but it was still nice. Saturday evening provided the biggest recharge though.
My very best friend and I play a game called Starcraft, and have since we were in high school (over 15 years). Due to busy family life and other entertainment creeping in, it has been over a year since we played together. However, it worked Saturday that he, his wife, and I could all play for a short while. It was great finally getting together with friends for a while and get back to a time before all this started.
Another appeal was sent out Friday with a different doctor doing the review. We'll see what God's plans have for the next week.
Monday, July 14, 2014
I love Fort Madison as it's a great place to watch a plethora of trains as well as barge traffic on the Mississippi. We went to watch trains in Fort Madison in April and saw quite a few. The care facility I contacted is interested in me and has openings, so my parents, caregiver, and I checked them out Friday.
The director was a good salesman, telling us everything we wanted to hear. The rooms are good size, about twice the size of the place in Des Moines I looked at, and have windows that look out onto the rest of the building, unfortunately not train tracks. However, it's a typical nursing home in that all the people I saw were well advanced in years. Another thing the director talked about was funding, through Medicaid.
We asked about keeping some sort of insurance for better funding, but he only talked about government funding. In thinking about equipment, he was talking about getting a ventilator for backup when I said I already have two. He was then surprised to learn that we own these vents and can continue to use them. A big difference with private insurance and Medicaid/Medicare funding is equipment purchase.
Insurance buys an item completely, even before it's in possession of the patient. That's how they paid $45,000 for a wheelchair in 2009 that I have yet to see. Government funding rents an item, indefinitely. A $15,000 ventilator can be rented for $500-$1,000 per month for several years, well beyond the time it takes for the item to be covered. Therefore, if a person moves, they don't get to take equipment with them.
What will come of living situation, I don't know, but at least a possibility exists of staying in the state.
Tuesday, July 8, 2014
This coming Monday, July 14, Wellmark Blue Cross Blue Shield is no longer funding my nursing care. I have not officially heard from them, but I should be getting a letter in the mail tomorrow. I have had many people praying for a different outcome, both locally and further away, but it is apparent that God's plan is different. I do have funding for nursing care through an exception from the state, but that is only approved until August 31.
The main two nursing homes in Iowa that take people on mechanical ventilation have both said they can't take me, so tomorrow begins a search for more possibilities. I don't know what I will find, but it's a place to start.
I am thankful that I've had so many years living at home with my parents and a few years in my own dorm and apartment. Many others in my situation have not had such an opportunity. I would love to be able to continue to do so, to keep my same caregivers, and be able to stay active in the community. That may still be in the plan, but it is not apparent at this time.
As I keep going back to, God tells us in Jeremiah 29:11, and other places, that He knows the plan for the life He has given us. It may not be our plan, but it is often better than what we could have imagined. At this point, it is very difficult to see and hard to trust, but it will happen. Time will tell what will come next for this life I've been given.
Sunday, July 6, 2014
Having a high spinal cord injury means you can't regulate your heat or generally sweat. Therefore, my fellow quads and I are often on the chilly side. I have friends that can be in an 80° room, wearing long pants, with a blanket over their legs, and be quite comfortable. So when summer warmth comes, it feels great to have the warmth of the sun on your face and let the rays come at you. However, you can get too much of a good thing.
High injury levels also deal with a dangerous condition called Autonomic Dysreflexia (AD) that if left untreated can lead to a stroke and possibly even death. One of the ways AD can start is by overheating, which is different for every individual. Another friend of mine can be in a 73° room, just wearing his birthday suit, with a cold pack under his neck, and still be hot. I have been on both ends of the spectrum and am not always sure what direction my body will decide to go.
|Outside getting some sun.|
I still prefer warm weather, but I AD much faster than I used to. In early May, I was out watching a parade on a sunny, warm day. Their was a large crowd due to the nice weather and kids were happily running around in just t-shirts and shorts. The high that day was only 70°, but combined with sitting in the sun, I started to AD pretty badly after a fairly short time. In my experience though, it wasn't too hard to remedy.
Now, when I'm outside, I park so that my legs and maybe arms are in the sun, but my head is in the shade. If there's a nice breeze, I can stay comfortable in this position for quite a while, especially if I'm near active railroad tracks. I don't know what the next few years will bring, if I revert back to being cold or not, but it just keeps me on my wheels (or toes) while living the quad life.
Monday, June 30, 2014
Between Iowa and Indianapolis, IN, where camp is now held, there is not much other than farm fields and small towns. Since 2003, I have made ten trips to CHAMP Camp, in Ohio and Indiana, one to Chicago to get my DPS, and one to Toronto to be best man in my best friend's wedding. Through these excursions, I have become familiar with traveling in the Midwest and the ubiquitous corn field, and uniqueness of certain areas.
I have lived in Iowa all my life, but when passing some small towns, I wonder what it would be like to live there. Let's take Danville, IN for an example, one of the towns we drove through. It had many nice looking older homes, along with some that weren't, and appeared to be a typical small Midwestern town. I liked that it had a train track going through it, but what differences does it have from my town, or how is it the same? Along this same road were several houses that peaked our interest and made us wonder how the inside looked.
Another town, or small city, we passed through was Peoria, IL. Driving through, it looks similar to Des Moines, but perhaps a little smaller. The three years I lived in Des Moines the city became very familiar to me and did not seem as big at first. From the interstate, all I could see were large buildings and parking garages, not anything that particular grabbed my interest. However, if living there, I wonder what it would feel like after a short time and if it would begin to feel like home.
My mind wonders while traveling, and if I had unlimited medical funds and could live anywhere I've seen, I consider my choices. In the end, I prefer my roots of small town Iowa, but getting to know a new community, and state, could be an interesting experience, at least for a short time.
Sunday, June 22, 2014
As a child growing up and now an adult with a severe disability, you're unfortunately not seen as an equal to your peers. During school activities, let's say sports in P.E. class, you're made to be a referee or base manager. When you're the only person in class who uses a wheelchair, this is somewhat of a safety factor, kids running for a ball could easily run into you, or be ran over, and injure themselves. Whatever the reasoning, you don't feel part of the action. For activities in a class when you're told to work together, I often had to be assigned to a group to work on a project.
|Three counselors welcome a camper in 2013|
Kids participate in EVERY activity, no matter what their challenges are. I remember my first year of camp, the last evening, having a squirt gun fight between the boys' and girls' cabins. Before then, I had never done anything close to it, but it just takes people that know where the water can and can't go. Parts of the chest, and especially the head, are great targets, just stay clear of the trach and electronics, like the ventilator. Being treated as a normal kid that could do everything like everybody else was a great experience. Going back as an adult is similar as my camper years.
New counselors, especially those in school in health related fields, look to me for guidance and how to do things. My fellow long-term counselors know that I help in different ways and let me do what I can. I can't do the camper's medical cares, but I can help to occupy one, or more, while another is getting something done. For the kids that have similar needs to mine, we work on how to deal with regular life, bug nurses (a.k.a. assistants or personal care attendants), or just shoot the breeze. As the camp orientation packet says, isn't it too bad the real world isn't like this?
One of my camp friends, a fellow alumni camper turned counselor, says it's his favorite week of the year. With all the memories, friends, and unique experiences, I feel pretty close to the same. Hopefully next year things will straighten out so that I can continue to make memories and help kids.
Monday, June 16, 2014
My father has been through a lot over the years. At 27, he suddenly had a young son with a severe disability. Since mom can't do all my needs, a lot is up to him when we don't have a nurse. He has also worked for many years, and paid a lot financially, at a high-stress job so I can have insurance. Many people I know with disabilities like mine, or fewer, don't have a father figure in their life.
I'm very thankful for mine and all that he has done for me. He learned how to take care of me at a time when there was no instant connection to people around the world in similar situations. He has done very well and I'm thankful to have him.
When I think of Father's Day, I also wonder I would have been like as a father. I would have loved to be able to bring up my own child(ren) and teach them about being a Christian and trusting in God's Word. Children that grow up with a parent with a disability tend to be more helpful to others and treat others with disabilities as any other person, at least from what I've read and seen. My kid(s) would also have little to do with footwear
Some nights after dad and I have had our boys' group at church, I could easily see taking one, or two, home and putting them to bed for the night. Other evenings, I can't wait to get them out the door back to their parents, as I know some parents feel. Unless the Lord has some major changes planned for me, I'll continue to teach kids through church and school and work with them as I'm given opportunity.
Monday, June 9, 2014
Fortunately, last month was very slow for work, only totaling nine-hours, but I still had things to do. Laying flat on my back or on my side for a couple hours is a great opportunity to nap, but I can only do that so much. With necessity being the mother of invention, I have learned that old quads can learn new tricks.
|Reading a Magazine|
When on my computer, like right now, I'm usually sitting in my bed or my chair. However, I'm now also working on it while flat. I started out by just watching episodes of Macgyver and having the keyboard within reach to change episodes when one finished. That developed into adding my wireless mouse in the mix and learning how to work it while flat. I try to do as much as possible via keyboard and have learned a few more keyboard shortcuts, but it does work. Instead of just watching TV episodes or movies I can also play a few games and email people.
The only remaining problem is being able to see what I'm doing. When I'm flat, the computer screen is past my feet, so at least five feet away from my face, further away than my nearsightedness lets me read. In bed, I'm usually fine without my glasses, but they may become an addition to the laying flat routine. I've learned even if you can't move or lay in a good position, you can still do things if you really want.
Saturday, June 7, 2014
Friday morning, I was told that an outside doctor would be reviewing my case to evaluate my needs. During the appeal process, my coverage would again be extended. It isn't certain, but the extension could be as long as another month.
Close to the end of the day Friday, I received a call from insurance confirming what I had been told. They also wanted the name of the doctor I wanted the reviewer to work with. That was an easy choice, so the information was given and they will schedule an interview time, likely next week.
I'm thankful that we again have another extension with insurance. However, now it will be up to this next round of evaluation to see what happens. God has surrounded me with friends and family all my life that I can't begin to thank enough. Through all this process, they have shown to be even more valuable. I just hope I can return the favor some day.
Sunday, June 1, 2014
Speaking of insurance, I received an indirect update from them a few days ago. Since we were appealing their decision, coverage for nursing was first extended to May 18 and then to June 7. This has helped to ease the transition to the new system and allowed the 60 days to go another month since it hasn't been used. Another nurse has also been found to cover my nights and lives close by, so it looks like June will be nearly covered. That's the good news, now for the update.
I contacted both Iowa senators and my representative about this situation to see if their influence could help. One of them, Senator Grassley, sent me a letter containing a reply from Wellmark Blue Cross Blue Shield, my insurance, on their decision. Since I no longer use a ventilator, all nursing coverage will be stopped on June 7. All other items will remain to be covered as long as it is deemed necessary by Wellmark. Even if I did go back on the vent, they would only provide coverage while I recovered and worked back off of it. Also, the nursing home in Des Moines I was working with decided I was too much work and would not take me. I have started giving my information to a facility in Waterloo, but the last I heard from them the answer was "not yes, but not no yet."
So despite letters from various doctors showing that diaphragm pacing is the same as a traditional ventilator, known to have problems like a vent, and that if it malfunctions I can't breathe, the decision is unchanged. One of my caregivers asked if the place in Waterloo says no and the exception to policy doesn't continue, what am I supposed to do? The short answer, I don't know.
My parents would cover everything as long as they could, but that couldn't last long. We had several nights not covered in May and those got to be pretty exhausting, especially for my mom. It's possible that I could get about ten hours a day covered through Medicaid, I have a fellow quad friend that has this situation. When we would choose to use those hours, night or day, and what to do about the remaining fourteen hours is unclear. If that doesn't get approved, I'm not sure what's left. My father's employer is switching insurance companies since Wellmark is very expensive and isn't covering our needs, but we already know that company won't cover nursing as needed.
As time continues, the future looks unsure, but that has been the case since January and we have been taken care of through half the year already. God's timing is not our timing, but He does have a plan for us all.
Monday, May 26, 2014
My grandfather served in the Korean War. His main job was managing a type of general goods store. The requirement for the position was someone that didn't drink alcohol, since that fit grandpa, he got the job. If any beer was missing at the end of a shift that hadn't been sold, the person on duty had to pay for it. Knowing grandpa, I highly doubt he ever had to pay a cent.
Like many veterans, grandpa didn't talk much about his experiences in war. One thing he did say is that he was in boot camp with Elvis Presley. However, nobody liked having him around because he kept playing his guitar all the time.
There were several occasions where my grandparents would help watch me for various reasons. Unfortunately, grandpa didn't like to sit, so I taught him how to play solitaire on the computer during down times. He said that "the guys" played solitaire on the ship back from Korea, but he didn't know how to play. It's the only thing he ever learned to do on the computer, and I had to help him get it going every time, but it gave him something to pass the time when they were here.
The ultimate sacrifice though was 2000 years ago. Through Christ's death and resurrection there is a freedom that is not bound by a country's borders or laws. If we believe in Him as our Lord and Savior and are truly repentant of our sins, we will have the freedom to live with Him for eternity.
As we remember those who have gone before us, we look forward to the day when death the enemy has been conquered and all wars and suffering will cease.
Monday, May 19, 2014
For me, I have full feeling from neck on up and some sensation on about the top inch of my chest. Everything else below that point doesn't give me any feedback. If someone touches my hand and I don't see it, I wouldn't know it happened. However, just because I don't feel below my shoulders, it does not mean feeling is gone. All the nerves are still in my body, their signals just don't make it to my head. One way my body reacts to being touched, or feeling something, is through muscle spasms.
I can be driving down a sidewalk, or riding in a car, and hit a bump and my arms and legs will flail in every direction, that's why they're strapped down. If I'm getting a shot or having blood taken for a test, my arm may react to the poke, but I don't feel a thing. I have been asked a few times, if I can't feel my feet, why do I go barefoot all the time. The answer, because my body still feels.
Preference is definitely part of the reason as well. I have read for many years about the benefits of Parents for Barefoot Children, the Barefoot Book, the Society for Barefoot Living (SBL), or the section on my site. The advantage for me skipping footwear, is that my body is much calmer, and has fewer muscle spasms. It also allows my caregivers to make sure I don't have any curled toes or anything causing pressure points.
There are many advantages to going barefoot, especially for kids, but those benefits are mainly for walking. I could easily write a few posts on the advantages of skipping footwear, but for now I'll refer any readers to the websites above.
Every day I can see my legs out in front of me, but I don't know if they're hot or cold, or possibly laying wrong. In many ways, it's like I'm attached to another person. I can see reactions, but don't get told why or what's going on. However, it does allow for some ways to take care of life's necessities. Since I can't feel, I get my bath at night while I sleep, one less thing to worry about during the day. I also can't feel the pressure sores that are likely very painful. You could also say though that I may not have gotten them in the first place if I could have felt problems forming.
Living as a quadriplegic is a unique life, but one that I've been given and will continue as God's plan continues.
Monday, May 12, 2014
A few weeks ago, an editor of a newspaper of a nearby town publicly said that gay organizations are trying to reword the Bible to make their sinful nature right with God. Unfortunately, he's right, but the paper didn't want to hear it and relieved him of his duties.
On April 22, a book titled God and the Gay Christian, by Matthew Vines, was released. It attempts to explain that God didn't mean for man and women to be together, but anyone a person feels as a companion. Vines tries to redetermine the need for creation of Adam and Eve as just a need for companionship, nothing more. You can read an analysis the book to see how far from the true word this book goes. A plain reading of scripture easily shows that homosexuality is a sin. Passages like 1 Corinthians 6:9-10, and Romans 1:26-27 are plainly against such behavior.
The United States is much like the nation of Israel that rebelled against God. In public schools, and even with the agreement of some churches, molecules to man evolution is being taught as fact. Students are being taught that life isn't special, we're just here by accident and are just pond scum. After you die, that's it, you won't know anything happened and after everyone else dies then they won't know anyone ever existed. We're seeing an increase of the result of this teaching on the news almost weekly.
More random violence of people being killed, especially in schools and college campuses. The life of an infant, a human being made by God, isn't anything special, just throw it away. A New Jersey woman released a video that she took while having an abortion. She was pleased that she could make a life and end it as she wanted.
I'm wonder if it's getting to be too late for this country to turn around and see the error of our ways. All authorities, or government, is put in place by God. That means we're what's being described in Romans 1, and it's unfortunately not hard to see. The religion of humanism, or atheism, is becoming more prevalent, and its followers more vocal and harsh against anything that doesn't agree with them, such as Christian teaching. What the future holds is in God's hands, but I'm afraid to see what is to come.
Sunday, May 4, 2014
Friday morning, we were notified that the one program my DHS case worker was trying for had been approved. My private hired caregivers and parents are now basically self-employed as what's called a CDAC provider and five nights a week of care through the nursing agency is covered. So, that means every Friday and Saturday night are not covered and my day people will have A LOT more paperwork. Since the funding is through Medicaid, it has some restrictions.
Each month, I can go out five times for personal needs, such as going to the grocery store or Wal-Mart. Thankfully, my case manager said this can also include walks on the bike path by the dam close to town as it helps maintain a healthy mental state, or something similar to that. Unfortunately, it doesn't include as long of an outing as going to watch trains, so we'll see how to get that in. Having Saturdays with wonderful weather and a caregiver and not getting to the tracks would be irritating, so maybe I can get it as part of maintaining good mental health. As I currently understand it, everything is up for somewhat of a review, so that could be an item to discuss. This doesn't sound bad, but it comes with a time limit.
All of this is only in place for 60 days, which I believe starts this Wednesday, May 7, when insurance cuts off nursing care. During these next two months, I am supposed to find an alternative for funding my care. What that alternative is, nobody has an idea at this point. Therefore, I could be back to looking at a nursing home in early July again.
As I have said before, we read in Jeremiah 29:11, "I know the plans I have for you, declares the Lord..." With this development, my dad's employer can now drop the expensive insurance and go with another company. That also meas my parents no longer have to pay out of pocket to help cover that extra expense. Through these past few months though, I am very thankful for the parents I've been given.
They went through a lot of work and frustration to try and find alternative funding solutions and to get all the needed paperwork complete. Mom said at some points it felt like we were on trial, being asked what care I really need, when do I need it, and why different skill levels of care are needed at different times.
Through the next several weeks, it's likely that we'll experience more of it. God's direction through all the people He has put around me continues to be evident and will be as the quad life continues.
Monday, April 28, 2014
Last week, my doctor had a conference call with another doctor and a couple nurses at my insurance company. They agreed I need to have care in order to prevent, and take care of, pressure sores and other needs. However, since I am not on the ventilator, just the diaphragm pacemaker, it doesn't need to be skilled care. However, that kind of care is considered comfort care, which isn't covered by my, or apparently any, plan.
The nursing home I'm planning to go to if nothing else works out also doesn't know if they can take me. I gave them my care needs, which I have in detail in a 30 page book, a few weeks ago. Now, they're unsure if they can take me with their other vent patients as I could be too much work for them. My caregivers laugh at that, but at least it shows they are making sure everyone gets adequate care. However, that means I may have to look at a facility much farther away from home, with just over a week to go.
At this point, all I have is that I do indeed need care, but can't find a way to get it. We are told in Matthew 6 to not worry about tomorrow, for today has enough worries of its own. That is definitely true, but increasingly difficult to remember. With trying to make sure to get ample time off my pressure sores, it's hard to get work done. When that work includes trying to stay at home, prioritizing is a real challenge.
It seems the main issue I keep running into is that the Diaphragmatic Pacemaker System (DPS) isn't understood. Yes, it allows me to be off the ventilator, but I'm still not breathing on my own. If my arm hits the wires just right, I'm not breathing unless it can be fixed or I'm put back on the vent. In the three years I've been using the DPS, that has happened several times. Therefore, I need caregivers skilled in the DPS and ventilator use. I still also need suctioned regularly, more than when I was on the vent, and continued chest treatment. No, the DPS doesn't have tubes that become disconnected, but it still has its own trouble.
By the next post, I need to have a solution, but unfortunately I won't be holding my breath. In order to do that, I would need the DPS turned off!
Monday, April 21, 2014
I remember the bunks of Recreation Unlimited in Ohio, where CHAMP Camp used to be held, very well. They were made to resemble an unfinished structure with wood beams and plywood left exposed. Through the many years I attended camp in Ohio, I almost looked forward to the familiar ceiling view. I can easily remember the different knots and filled wholes with small differences in color from the surrounding wood. As I lay getting ready for bed, or getting up in the morning, I could listen to the campers getting their cares done while my familiar view of wood became burned in my memory.
Hospitals have entirely different ceilings depending on where you're at. Some are just plain drop ceilings with a smorgasbord of stuff sticking through the tiles. Ceiling vents are full of small wholes from one end to the other making for a great way to take up time by counting every dot. Hallways are lined with lights and tiles with the operating room being consumed by huge lights that can move at all angles.
Too many years ago, when I was in my mid-teens, I was Craig Hospital near Denver, CO. They are one of the top hospitals for spinal cord injuries in the country, and I was there to evaluate the seat on my wheelchair. Unfortunately, they didn't do some of my cares as I needed and I ended up with a collapsed lung. That meant I had to move from my friendly, apartment style room with bright, friendly tiled ceiling, to the general hospital in a room with four other patients. This was a dark room with tracks for curtains blocking wondering eyes. Directly across from me was a kid a couple years younger than me who had just been injured. He didn't know what to expect in this new life and was flat in bed frequently. One time when he was gone somewhere, friends came and taped a poster above his bed. When he returned, I could see him grin from ear to ear at the new scenery he had been given.
Of course, the most familiar ceiling of all for me is my room at home. I can quickly spot the shapes in the popcorn texture and know each scratch, and frequent spider webs, in the track for my lift. In the two decades I've lived here, it is definitely home. With just over two weeks left, it's still uncertain where I will be living after May 7. If I will get familiar with a new ceiling, I don't know. The unique perspective that God has given me wherever I'm at will continue.
Monday, April 14, 2014
One of the programs my county DHS worker was trying to get did come through. It will cover one of my day nurses for 40 hours per week for three months. This is a long way from the average of 123 hours per week I get now, but it's a start. Also last week, we were told that my main night nurse had requested a six-month leave of absence. The nursing agency had already been looking for another nurse since August, so they were warning us that they didn't know if they could cover more than three nights a week. Tonight, a new nurse is scheduled to train to help fill in the gaps. I don't know where she came from, but it's another step in the right direction.
I have been saying that I continue to rely on God's direction, no matter where it takes me. These past several weeks have been difficult, but we are seeing the possible start of a solution. I just read this article about how God's timing has been evident with the creation ministry and how seemingly impossible circumstances were overcome. Looking back at the life I've been given, I can recount similar times as well.
After more than three years of planning, my family and I still didn't know what college I would attend, and where I would live, over a month after high school graduation. Two weeks before the final application deadline, the nursing company we were working with found enough caregivers to allow me to attend the college I wanted, outside of my hometown.
About three years later, I was close to reaching my lifetime cap on insurance and faced going on state insurance, which would only pay for me to be in a nursing home. Fortunately, a few months before the deadline, we were able to get me on a new plan that covered me until now.
May 7 is still a few weeks away, and more funding options and appeals are in the works. My parents and I have been trying to think of how we could make due with just 40 hours a week as well. In another week, we'll see what has come.
Monday, April 7, 2014
This morning, I received a call from insurance. Since I no longer use a vent, they said I no longer need care. If I went back on the vent, I still wouldn't qualify. According to the policy, I have to either be improving to get off the vent, or have a progressive disease that I'm getting worse. Just have a spinal cord injury and being dependent on mechanical ventilation to breathe doesn't qualify. So, on May 7, I will no longer have nursing care.
I called the care facility I visited last year and let them know the situation. I'm going to be working on getting them my information over the next few days. I'm also planning on contacting the media. I don't think anything will change, but just so people know what's going on. I'm not real sure what to think of this development.
At least I'll be able to get my school talk in. Three are complete already with another one this week and the last one in a couple weeks. With the decision final, we at least don't have to wonder what's coming. My parents at least won't have to stay up nights anymore and can go on vacation without having to worry about my coverage.
This isn't the development we wanted, but God's will be done. I enjoy being able to go out and get in the sun when I want, but maybe that will continue. As the next few weeks fold out, I will find out more. I guess keep following to see as I learn what this new situation will be like. We'll wait and see what comes.
Monday, March 31, 2014
Today's appointment was an unplanned one. I started a new treatment on the newest wound a couple weeks ago. Unfortunately, it's growing larger at a rapid pace no matter what I do. Friday night and Saturday morning, my right hip and thigh had a large, hot, red splotchy area. This is one of the medication's side effects, but I also had a high temp, sore throat, and a lot of congestion.
We figured part of the congestion was due to flowers in my room that came from grandpa's funeral. Unfortunately, evicting them from my room only helped briefly. So today, after my wound doctor agreed, I visited my GP. With one look, he diagnosed me with severe strep throat. Now I'm on 24-hour house quarantine until I'm no longer contagious. That means I'll be missing my monthly church council meeting, but colder temps as well.
I'm thankful that I don't get ill very often, but it's unfortunate when the rare times cause me to miss something I'm active in. Fortunately, I didn't have a school talk tomorrow, the next one isn't until Friday. Hopefully by next week I'll be able to report an update on the insurance situation. Until then, have a great start to April.