Monday, December 30, 2013

Last post for 2013

Well, this is it, it's the last Monday of the month and of the year. I did my annual year in review last week and covered the highlights of what happened. It has been one of ups and downs, but that is pretty typical. At the end of this year though, I wonder what is in store for the next.

On Christmas Eve, my parents received a letter that our, my, health insurance plan doesn't meet the new regulations. Therefore, we will have to switch plans. What this new plan will be, what it will cover, or even how to get it, are all questions we don't know answers to.

The plan I'm on now allows us to hire our own caregivers, they don't have to be through an agency. It is less expensive for the insurance company and it gives us much more flexibility. Nursing agencies have to have a incensed nurse, LPN or RN, to cover my medical needs. We don't have that restriction, so I have had aids and people with no formal medical training help take care of me. It has worked well in my years with SCI and given my family and I more covered time than we likely would have otherwise. If the new plan doesn't allow this, life may change drastically.

Since August, the nursing agency I use has been trying to get another night person, but they have not been successful. Since their main office is over an hour away, they claim that's part of the problem, but they also don't seem to be looking very hard. If they were required to cover day and night, it likely would not happen. Even if they did find people, insurance limits how much they spend per day, so we wouldn't be able to get near enough hours for my parents to work or to cover all of my medical needs throughout the day.

My mother sustained serious injuries at the time of our car accident as well, not like me, but she has a lot of pain and trouble walking. She does a lot for me, but she can't do all my cares. Dad works long days as the principal bread winner in the family and can't take off all the time to help me.

The only remaining option would then be to live in a nursing home. To my knowledge, only two in Iowa take someone with my needs, and I've been to both. Neither of them have anywhere near the level of quality care I need and don't have safe conditions for me.

This past Saturday was warm enough I could go out and watch trains. My assistant and I stayed in the van, but it was great to get out of the house, even skipping footwear, and do something fun. Unfortunately, I'm concerned I may not have many of these experiences left.

Matthew 6:25 says "Can any one of you by worrying add a single hour to your life?" Jeremiah 29:11 also says "For I know the plans I have for you,' declares the Lord." I have been reminding myself of these two verses a lot the last few days. It is hard not to think the worst and worry about what will come. I have seen God's plan in looking back at the life I've been given and it will continue. We shall see what the new year will bring.

Monday, December 23, 2013


Early Merry Christmas everyone! With just a little over 24 hours remaining, procrastinators are likely starting to get their gifts. I'm finished with everything, as long as UPS delivers on time that is.

Yesterday was the first of two family Christmas gatherings. We had 43 people all in my grandparents' house, including me. I probably take up enough space for at least two people, so maybe you could say 44. I have enough space to basically turn around and maybe move about a foot or two. Their is something to say about a meeting in a house, it does make it feel much more like a family gathering. However, seating is definitely at a premium. If you want to keep your spot, and don't bring your own chair, then you don't want to move. With a few young kids toddling around, I'm always a little nervous of backing over one.

The next get together is a little more spacious and not quite as many people, so it's easier to move around. Both sets of my grandparents are getting up there in years, so we may not have many of these full family Christmases remaining. Seeing cousins and kids that you only see once a year is something I look forward to. Unfortunately, it's starting to get to the point that, with babies especially, I have to think who belongs to which family.

As you celebrate this year, remember what the day commemorates. The birth of a baby, as foretold for 4000 years, that came to save us from our sins. Commercialization of Christmas has become worse every year, so remember to take time and reflect on the true gift of Christmas.

Monday, December 16, 2013

Invisible? Maybe

Last week I read a blog post by Ami Claxton, Ph.D. called "Social Isolation: Are People With Disabilities Invisible?" Dr. Claxton's husband, wheeler, is a fellow quadriplegic. He has a lower level injury than I do and is able to breath on his own, but deals with many of the same issues as I do. The article goes on to explain several social complications presented to families like mine. I suggest reading it first, I will wait until you return.

Welcome back, I hope you liked the post as well as I did. For the most part, I agree with Dr. Claxton's blog, but there are a few things I would change about it. First, as a C2/3 vent dependent quadriplegic, I am definitely not invisible. I use a 400 pound wheelchair with large rear wheels, am a couple feet long, and, until three years ago, use a mechanical ventilator that constantly makes noise. Any time I'm out in public, I get noticed by anyone in the vicinity. Invisibility would by highly advantageous at times, but that is not a luxury I have. Rather than invisible, I would argue more toward unknown, misunderstood, or even scared.

As I have said in previous posts, I require someone to be with me 24/7, this includes while on the rare social outing. This gives me the added challenge of always needing to cover two in case of paying for entry and feeding more than one. Most caregivers are older than me as well, so if I'm out with friends my own age, I have to also try to fit my assistant into the conversation. This can be difficult when she is near retirement age and decides to talk about her grand kids' activities or, better yet, her husband's stomach issues while having supper.

For a few years, I attended a young adults' group at my church. We generally met two Fridays a month, once for Bible study and again for a fun night. One year, we met almost exclusively at my house. It was accessible and obviously easy for me to get to, but it did get crowded quickly. It also got tiresome asking my parents to prepare for company so often, but it did work and the other attendees were very helpful in cleaning up afterward. One meeting in late November everyone started talking about what to do for our Christmas party. After a few suggestions, one person offered meeting in their parents' basement; it had a big screen TV, Wii, and plenty of room for everyone. I almost just kept my mouth shut and just figured I'd stay home, but I asked if it was perhaps a walk in basement (I do have portable ramps).

Their faces turned from glee of party planning to disappointment, it wasn't accessible. They offered ideas of carrying my chair down the steps, but knowing the full weight of my chair and fragility of it, I turned down the offer. After about a week, it was decided we would meet in the church basement. It was a fun time, but not what they had been looking forward to a few weeks earlier.

Over the next few years, we primarily met at church, but I didn't make it every time. Last year, the group did area mission type work, like sorting items at the local thrift store whose sales purchase Bibles for missionaries. That kind of activity is great for a church group, but not for someone who has no use of his hands. So as to not be the proverbial talking bump on a log, I didn't attend any of last year's meetings. This year, I have been removed from the email list and don't know what they're doing or when they're meeting. Since I didn't attend or show interest last year, I understand, but it is nice to at least know what's going on.

Social isolation is an unfortunate big side effect of having a severe disability. Almost any time I'm in a group of people, I see more backs than faces. In these situations, I also don't know what to do, I am not up on a lot of current events, especially sports, and don't know what to talk about. To be social, you need to have been socialized first.

In the case of an evening event, it gets even more difficult to plan. I only have an assistant on Friday nights, and she doesn't drive my van. Therefore, I require my parents' help for any such time. Then I factor in how long I should be up in my chair and if I can participate. Therefore, I've become very used to being "friends" with my computer and hanging out in my room. It is nice to have alone time, but real friends are great to.

Fortunately, my parents have friends that we invite on occasion, and I have church activities I'm required at weekly and another a couple times a month. These are currently plenty of interaction for my taste. Maybe next year will see a change and I can get out more often.

Monday, December 9, 2013


Winter arrived this weekend with waking up Saturday morning to a temp of -3 outside. Sunday was warmer, but it snowed most of the day. The total was only a couple inches, but it still makes everything white and blinding in the sun. Officially, winter doesn't arrive for another 12 days, but the cold and snow that comes with it has already shown.

I committed one of the big mistakes in the quad life, I relied too much on others. When you have an assistant 24/7, it's easy to let them help out with daily needs. However, you still need to keep track of what's going on and be a responsible adult, that's where I messed up.

It probably doesn't come as a surprise that I take a number of prescription meds. I'm told I take a lot less than some people, but they are a part of life. Medications don't grow on trees, at least the ones I take, so they need to be ordered monthly. I have it so that I can order most of my prescriptions all at the same time, it makes them easier to keep track of and my pharmacy only has to be bugged by me once a month. Unfortunately, one got off the rotation and has to be ordered at a different time, this is the problematic one today.

Last night, my night nurse cancelled due to being ill and a replacement couldn't be found. So, my main day assistant came in for a short time to do my night cares before my parents took over. When she got my night meds, this is when she noticed it was the last of one of them. Their wasn't another bottle waiting with the others, so I only had one in my travel bag.

First thing this morning I called my pharmacy and reordered the drug and told the person that I needed it today. I asked my parents to stop by after work to see if it was ready and they were told it was out being delivered. As I write this, the pharmacy closed almost three hours ago and it hasn't arrived, so I'm assuming it isn't coming anymore. The missing med helps control muscle spasms, so it just means my arms and legs will have fun flopping around more tonight while I attempt to sleep. As long as my arm doesn't bang against my DPS plug and stop me breathing, it won't be a big issue.

I may have A LOT of experience in the quad life, but I still make mistakes. This is one I'm thankful doesn't come with major consequences, but God does like to give me wake up calls like this. I need to keep better track of things myself, and not always depend on those around me.

We shall see what the next week brings, hopefully warmer temps are part of it.

Monday, December 2, 2013

Early December

First, sorry about last week's post's lack of sense and direction. I have unfortunately been a bit under the weather for the last two weeks and didn't think about writing until the last minute. That's actually not uncommon, little to know planning, but I don't recommend it with a fuzzy head to start with. Thankfully, today has been an improvement from the last several. For the first time in many weeks I finally had a good night's sleep and had much clearer lungs today.

With it being the first work day of the month, I had to finish up billing and start new tracking for the month. I was happy to find that November was more than three times busier than October. It's a nice feeling to be productive and working rather than just sitting around waiting for something to do. So far, it looks like December should be busy as well.

The start of December also means time to think about Christmas and celebrating Christ's birth. It is fun to decorate, see houses with lights, and listen to Christmas music, but the real meaning for the celebration is quickly getting lost in the shuffle. All these things aren't bad, I currently have piano Christmas music playing on iTunes with lights in my windows and a Christmas train tree a few feet in front of me, but we need to remember the "reason for the season." Thee ministry I follow, Answers in Genesis, is currently running billboard ads saying what Christmas is. It is an area that many people need further education and I'm glad to see it working.

That is about all I have to report this week. Have a great start to a new month and stay tuned for next week!