Sunday, July 27, 2014


A few years ago at one of my school talks, a student asked me what was my favorite part of prayer. I thought this was quite the question coming from a second grader and not one I was prepared. My mind swirled for a minute wondering what he meant, the beginning, middle, or end maybe? The confusion must have shown on my face as a few of the students pointed to the board behind me where the four parts of prayer were listed, Adoration, Confession, Thanksgiving, and Supplication (ACTS). This now became easy, my favorite and easiest part is thanksgiving.

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

Wearing Down

I use my mouth for everything I do, so I take care of it the best I can With using an electric toothbrush, flossing, and using mouth rinse, my dentist usually has good reports. This was the case at an appointment a couple weeks ago, but he had something new to report, my teeth are wearing down. We joked about the local water supply, but it's just a result of so much use. I was reassured though that when needed caps can be placed and everything will be good as new. My teeth however, are not the only thing wearing out.

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
Unfortunately, it's just getting to be too much all at once. Last week, I was having a few "quad days" as I say and now on two antibiotics due to a UTI with two different infection types. I was nearly ready to give up. Just call one of the nursing homes that could take me, move in, go on Medicaid completely, and be done with it all. Fortunately, when you lean on God, He gives you strength when you need it most.

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


With continued funding for nursing uncertain, I spent more time last week looking at care facilities. To my knowledge, there are six places in Iowa that will take someone with my needs. The closest one said no, citing I'm too much work, and another one is currently full. One I contacted is basically a hospital and doesn't take long-term cases, as I would be. That leaves the field cut by half already. Another one in northeast Iowa currently has an opening, but they have a high turn over rate in clients, so they don't know what availability they will have in late August. The last one on my call list was in southeast Iowa in another small town, Fort Madison.

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

The Answer Is...

My case supervisor from my nursing agency called today to let me know my insurance, Wellmark, had called with a decision about my nursing care. Ever since the peer review with my doctor in early June, we haven't heard anything, so we were anxious to hear the decision. A friend of mine thought it was a good sign that Wellmark was taking so long to decide, but I didn't know what to expect. Unfortunately, the decision didn't go as we had hoped.

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


With the fourth of July now past, it feels like we're already halfway through summer. That also means the warmest part of the year is at hand. When living the quad life, you have a love/hate relationship with heat, sometimes simultaneously.

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.
In my younger years, which is getting to be too long ago, I was always cold. I loved summer temps and couldn't wait for an 80° day and to sit in the sun and bake. Every year I also had trouble with AD, but I learned the warning signs as I grew older and when to find shade and a cold drink. A few years ago though, my body switched temps and I now more of the opposite.

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

Pick a State

Last week I talked about why I didn't work at camp this year. However, we did decide to go up for visit day, which was Tuesday. The entire trip ended up being about eighteen hours of travel for about four hours of visiting, but it was a great trip. In that short time, I was able to visit with several of my friends, meet a few of the new campers, and even go on the new zip line they had this year. I'm thankful that it worked out and that my dad especially was willing to do so much driving in a short time period.

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

CHAMP Camp 2014

Today is the official start of CHAMP Camp 2014, and I'm missing it. Due to the insurance trouble and not knowing what would be going on this week, I let my application be withdrawn. Yesterday was counselor orientation and today marks camper arrival, likely as I'm typing this. It has been fun to at least see pictures on Facebook from camp friends. After 19 years of going to camp, seven years as a camper, you would think a break would be welcome.

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
I would like to say it's different as an adult, but that's unfortunately not the case. People tend to address the person I'm with instead of me, especially medical personal, and you're not thought of as an individual that contributes to society. I work to change this stereotype, but only one person can reach so many people. At CHAMP Camp, the real world is a distant memory.

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.