Sunday, November 22, 2015

Snow Day

It is not uncommon for Iowa to have received our first snow by this time of the year. The annual occurrence came this past Friday. However, it wasn't the usual light snowfall that may just accumulate in the grass. No, this was a real abrupt welcome to winter.

Some parts of Iowa received 14" of snow, with a few locations only getting a dusting. We were in the 5"-7" range of accumulation. That's a good amount for the first snow of the season, but not anything extreme. The most challenging part of this storm was the roads.

Early Thursday morning, my parents left for Minneapolis for my dad's work. They had planned to watch trains afterword and get back home sometime on Saturday. With the weather predictions though, they started back from Wisconsin in early afternoon.

At first the snow wasn't bad and stopped a few times. Unfortunately, the closer to home they came, the worse road conditions became. Finally, about 19 miles from home, they couldn't progress any further and stopped for the night at my grandmother's house. My caregiver and I assured them we were fine and the night nurse would make it.

However, less than two hours later, my night assistant called that the main roads hadn't been treated and she couldn't make it. Therefore, it was down to just the current helper and I. Earlier in the day, my primary day assistant and I had talked about possible plans in case everyone was snowed in. Since she lives only a few blocks away, she was able to make it to my house to help.

Throughout the night then, my two caregivers switched off letting one rest while the other was responsible for me. This is the first time I have been at home with a nurse unable to come due to weather and my parents gone. I'm very thankful it worked out and that I've been given caring people that are willing to do whatever is needed.

Unexpected times in the quad life can require thinking of new solutions. I can see God had everything ready to easily work out and I just needed to follow His plan. Hopefully this is the only time for a major storm, but it's unlikely. When the next one comes though, I know it has already been planned.

Sunday, November 15, 2015

Planet Earth

A few years ago, the Discovery Channel had a series called Earth. I have seen it before, but I put the series on my list for Netflix. The first DVD came last week and I watched the initial three episodes.

The high definition video really makes you feel like you are seeing different areas of the world through your own eyes. As each show focuses on one particular area or theme, you get to see the complexity of nature and the beauty of creation. As a Christian, I marvel at God's creative work and the world He has given us.

Of course the narrator attributes everything to occurring slowly over millions of years and just being a byproduct of chance. Looking at the world from a Biblical standpoint, I see stark evidence of the flood in Noah's day and the results being displayed in geology.

In one show, we're told how the Colorado River slowly carved out the Grand Canyon, but it's not today. As was evident after the Mount Saint Helen's eruption, a release of a lot of water can easily create a canyon in just a few hours. The Grand Canyon is a result of this with water collecting as the flood subsided.

With all the beauty of the earth, a lot of it is also ugly and cruel. Another scene showed wild dogs hunting prey and devouring their catch. Thanks to the entrance of sin, our paradise was lost and along with its remaining elegance, much pain exists.

As you go around your part of the planet, look for special parts of creation that God has given us to enjoy. It can be a challenge at times, but it is always there. Living the quad life often forces me to have to go slower than I would like, but it gives opportunity to look and see the world around me in its majesty and malignant.

Tuesday, November 10, 2015

Bike Update

Back in July, I started using the FES bike at Younkers Rehab in Des Moines. Since then, I have been going to Des Moines about every other week for a ride. In my time I've done eight sessions and have biked 11 miles. This coming Thursday will likely be my last ride for the year.

In order to get the electrodes on my legs, I have to wear shorts. It's late enough in the year that shorts really aren't an option any more. The forecast for this week is a high of 51° and wind gusts up to 40 mph. We're planning to cover my legs in a blanket and try to make the roll from van to indoors as short as possible.

Biking hat
The newness of it has worn off, but I still greatly enjoy my biking days. My legs are much calmer than usual and it's still a good feeling to have my legs moving a little under their own power. I wish I lived closer to a system or lived in a warmer climate that I could keep going.

We started the paperwork trail to get my own bike not long after my first session, but most of the communication occurred in October. Restorative Therapies, the bike producer, said that we needed to purchase the bike before insurance would pay for it. My insurance said they needed a prior approval submitted, and then they would either approve or deny the bike. We went back and forth a few times, but we're back to me needing to purchase the system in order to get it. Insurance would then be billed and the funds may be recovered.

Unfortunately, I don't have over $14,000 just sitting around to be able to buy the bike. I've been told grants are available, but I'm not able to use them . Therefore, it looks like I won't be able to get my own system to use at home.

I understand this isn't a device necessary for life and that it is just nice to have. If I did get to use it at home 3-4 days a week, the main result would only be calmer legs and maybe getting to reduce my meds. That would be great, but no real difference in the long run (or bike ride).

Hopefully when warm weather returns I can continue my miles. However, with not being able to get my own, I don't know if it would be real helpful to continue alternating weeks indefinitely. Part of the quad life is about making choices. We'll see what comes with this in time.

Monday, November 2, 2015

Three Headed Monster

In junior high I remember diagramming sentences. My teacher took us through what he called the three headed monster of the process. I didn't like facing the monster then and lately it seems like the creature has returned.

The last few months have very busy for work and it seems like I can never get ahead. Today for instance, most of my sitting time was spent getting billing out for last month's work. That is now finished, but as I type this at 7:30 in the evening, I have yet to touch my regular Monday morning assignments. When I sit up in another hour, I will finally be able to get it started. However, the ongoing projects that need work likely won't get touched, again, today. This is the first head of the monster.

Second is the head of funding frustration. Last week I talked about the wisdom of government funded insurance. In talking with my county DHS worker, she advised it would be better if I didn't work, at least not for pay. Yes, work can be frustrating (see head 1), but I would much rather be too busy than not doing anything. I do know other people with disabilities that only do some volunteer work, but I know some would much rather be working for a living. I'm thankful for what I can do and I cannot see myself sitting and laying around all day playing games.

My final head is just regular life with a major disability. Mom is once again spending her evening doing paperwork so my day caregivers can get funded. Earlier this evening my parents were discussing who had to do what and who could come with me during my council meeting at church tomorrow night. The last ten days or so have also needed a lot of suctioning to keep my lungs clear requiring more work from my parents at times we don't have help.

Rolling back though and looking at everything as one beast to tackle can seem like too much to handle. However, a slight glance elsewhere reveals the problems aren't bad. Bringing each and every item to God in prayer starts to tame the dragon.

None of my clients are getting too frustrated with my lack of speed in processing requests. I know I'm doing the tasks God has given me and have been for years. Political schemes change, but the king of kings is Lord of all. I've also been given a family that is very caring and willing to do what's needed to make our situation work.

It took the entire school year to tackle the diagramming monster, and this one will take time as well. In the last two months, two campers and one counselor from CHAMP Camp have been released from earthly cares. I can be thankful for the quad life I've been given and continue to run the race before me, being sure to jump the hurdles. Another week can bring a new set of circumstances and they will be tackled as they come.

Sunday, October 25, 2015

Wrapping up October

Today starts the last week of the month, and it has been a busy month. Tuesday will be my fourth school visit and finish what is currently planned. With more blessings than I can count, there have also been a few struggles.

For the most part, I'm liking the new trach button. I like having a free neck and the smaller profile of the button versus the trach. However, I've had a lot of drainage around it and we're cleaning around the area four times a day. With the trach, we only had to do once a day. The last few days have required a lot of suctioning (clearing out my lungs) due to a cold or something I have bugging me. It does work with the button, but not quite as easily and it does hurt my throat more. Hopefully the suctioning will return to normal soon.

Some good news, I am approved for Medicaid again. However, they added a stipulation that I need to pay over $200 per month in order to keep it. My main income is still Social Security with a little from working on web sites. September was my busiest month this year, and therefore I had more income from work. I pay myself a low rate and with it being busy, I still only had 25 hours for the entire month.

Even though my monthly average is well below last month's earnings, Medicaid based my monthly income solely on the last month. So as it currently stands, I will need to use a third of my income to pay for insurance that is for people like me that can't afford insurance. Using needs based income to cover needs based insurance just doesn't make sense. Now with monthly rent and uncovered medical expenses, it's going to be very difficult not to spend more than I receive. I'm well aware this what most people need to watch, but it still seems wrong.

As I tried to tell the kids in children's service today, we need to do things as God tells us, including not to worry. I know I say it often, but it's a hard one to do for me. I pray that next month will be calmer in the quad life, but I'm guessing it won't be a big change.

Wednesday, October 21, 2015


We live in a world that has an ever increasing amount of resources online. Information can be transferred in an instant and with automation, approvals given automatically. Unfortunately, not everything works as quickly, and that is where problems can occur.

About a month ago, I received my annual form from Medicaid wanting my information and making sure I still qualify to receive it. I know the US Post Office (snail mail) can be slow, so I try to get it filled out quickly and sent back so I meet the deadlines. Sometimes they require more detailed information on my income, but not always.

Two weeks later, I received another letter requesting copies of my latest bank statement and income from work. This letter had a stamp of October 6 on the envelope when it went through the Des Moines Post Office. My information was copied and sent as requested. I received another letter, with a date of October 5, saying my Medicaid had been denied for not giving all paperwork.

Therefore, I was denied for not providing paperwork I hadn't been asked to provide. It's one of the wonderful results of snail mail and living in a state that is trying to save money by reducing Medicaid expenses and ship the governance of the program to another state.

Without Medicaid, I won't have funding for my day nurses, dentist, and several other medical expenses. I have it until November 1, so I'm praying my case will be reviewed before then and everything will continue as is. Unfortunately, basically the same thing happened last year, but I was re-enrolled already before receiving my denial letter. Fun with funding never seems to cease.

As I said last week, I have enjoyed many blessings lately and am thankful for them. God knows what I need, well before I even ask for it. In this matter, I know it isn't any different and will work out in due time. A large part of the quad life is relying on God's plan and timing, especially with annoying politics.

Tuesday, October 13, 2015

Going Strapless

For over 30 years, I have had a tracheostomy (trach) and ties around my neck to keep it in place. When you use a traditional ventilator for breathing, this is your primary option for getting air into your lungs comfortably. However, I have now gone strapless.

Since I started using the diaphragm pacemaker system in 2010, I have capped off my trach and breathed through my nose and mouth. Since I was still using the vent part-time, this worked well. It has now been about two years since I used the vent and other than clearing my lungs by suctioning, the trach has stayed capped.

One of the problems with having a trach long-term is that it can rub the inside of the throat. There is also a major artery nearby that can be rubbed through causing major, to total, blood loss in a very short amount of time. I've been feeling a lot rubbing the past few months and was causing a sore throat. With this in mind, I made a switch this past Friday.

After a short doctor's visit, he replaced the trach with a trach button. The button is similar to what I had in that it's capped off and allows me to breath normally. We can also uncap it in order to clear out my lungs. The main differences are that it is about a quarter of the length of the trach and it keeps itself in place.

It has felt great getting rid of the rubbing in my throat, but I'm still getting used to having a bare neck. Shirt collars rubbing feel really strange and it sometimes makes me feel like the trach is going to pop out without the ties in place. I've had a lifetime of getting used to the old method and four days for the new, so I think it will take time to adjust. I mainly keep it under my shirt as well, so not many others notice the change.

Through the last few months, I have had several large blessings; getting a new chair after several years work, seeing my very good friend for the first time in many years, and now this. I'm thankful for the good things God has given me, but wonder what trials await.

I'm scheduled to see my doctor again in November and we'll see if the button stays or the trach returns. Until then, I enjoy the new freedom in the quad life.