Yes I will, but first...

With everything going on this year, churches and businesses closed, I was starting to guess I would not have opportunity to preach in 2020. In the last few months though, two congregations have asked me to help fill their pulpit. I gladly accept the chance to present God's Word, but I need to be able to access the building as well.

It has been thirty years since the passage of the Americans with Disabilities Act. The ADA has accessibility requirements for public businesses, but churches are not required to meet them. It is recommended that places of worship make provisions for full access, but they don't have to make changes. That's especially the case with older buildings.

Before the first church even talked with me, the janitor talked with my mom about me getting into the sanctuary. They do have an elevator, but I have come across elevators that I don't fit in. When I was called, I accepted to preach on two different dates, but asked to test the facility as well. The janitor and I worked out a time, and I was able to test the access and see if anything would need to be adjusted. It looks like it will work well though and my first visit as substitute preacher is scheduled for next week.

I also received another request from a different congregation for later this year, and accepted with the same clause. My parents were able to scope this facility out yesterday and it is an older building, but has added ramps and an elevator that made it accessible. Therefore, I now have three times I'm scheduled to preach in the next three months.

In many ways, church accessibility is a catch 22. A congregation can say they don't have anyone with mobility issues attend, and therefore don't want to add the expense of modifications. However, without the changes, people like myself are unable to attend and show the need. In the three years I have been licensed to exhort (preach), I have only had one request from a congregation with a completely inaccessible facility. The primary barrier has been getting asked to preach in the winter, and not able to accept due to weather concerns. It's part of the quad life, but I don't like saying no.

Next week will be my first time inside a church building since March. Preaching to small congregations and getting to fellowship with them is something I am eagerly anticipating again. I pray though that more strict regulations don't come again though and make it so church can't meet. I will see what God has planned for the months ahead.

Printing a Button

For 30 years, I used a tracheostomy (trach) to connect to my ventilator and help access my lungs to clear them out. However, I had to use a special size that required some work when I ordered new ones. Eventually though, it always worked out and I got what I needed. In 2015, I switched to a trach button and looked forward to easier replacement parts. Unfortunately, that didn't last very long.

Just like my trach, the button has two pieces. An outer sleeve that always stays in my throat and a button, or vent adapter, that slips into it. The button completely seals off the hole in my throat so I breathe through my nose and mouth. It can get dirty at times, so I change the button once a week. I had a set of three, so I could have one in use and two for cleaning and backup.

Somehow, one of the three went missing at some point. I'm guessing it was during one of my camp trips that it may have been left behind, but it was never found. I wasn't comfortable with having just one extra, and went to order another one. In that process, my equipment company learned the button I use was no longer available, and hadn't been for about a year. That was over a year ago, and I have been searching for a solution ever since.

The button is nothing other than a block of plastic molded in the proper shape. I wondered if a 3D printer could be a solution, but wasn't sure where to look. I brought up the problem with my ENT last month and he knew someone that had made printed solutions for him before. Over the next few days, I released my one spare plug to a nurse I had barely met for her college age sons to measure and print. It was quickly returned to me, and I waited for the results.

After several email exchanges, the final product was in my position. Three new blue plugs to test with my external sleeve. This week, my nurse and I tried the new buttons in my spare outer sleeves. Two of them fit well, but one didn't. The printer couldn't quite get them smooth, but they look like they should work. As of this writing though, I haven't tried them in my neck. That may come as a future update when I feel adventurous.

I'm thankful for God's provisions throughout the life He has given me. Living the quad life has its challenges, but at least it means few days are boring.

Sticky Face

For over 25 years, I only used my nose for breathing out. If it was a little stuffy or clogged, it didn't make much difference to my breathing. Now that I have uses it both directions for a few years, the trouble of stuffiness has become an issue.

At night, I sleep completely on my side at about 90° to the bed. It's great for getting my back off the sheet for once, but my left side is also very difficult for breathing. I try to struggle to bring in air, but my nose is just too tight and I often end up on my back again. It's not very conducive to sleep and doesn't help with skin trouble either. Therefore, I talked to my ENT about it a few weeks ago.

He said two parts of the body of the body continue to grow with age, ears and nose tissue. I would also add lower abdomen, but this was new information to me. Investigating further, he noticed my nose looked fairly closed. It's likely due to not getting full use for so long, but that can't be changed. The doctor said I had two choices, extensive surgery, or try a breathe right.

Nose itching

I haven't added any surgeries to my extensive list lately, but opted to try the second option first. The first struggle was figuring out how to get them to stay in place. My night nurses would hold it in place tightly, but it kept popping off as soon as they let go. One tried rubbing the skin with an alcohol wipe, drying, and then applying the strip. Thankfully, this process worked for at part of the night. Therefore, in order to sleep, I now take 2-3 medications and also use alcohol every night.

Since I sleep with a pillow over my head, and on my side, the breathing aide frequently comes at least partially off during the night. While it's place though, it is much easier to breathe. When it comes off in the morning, my nose is left with glue on it. Even after washing, it doesn't fully come off until it wears off.

My nose is something I can feel very well, especially when it itches. Since I try to be as independent as possible, I frequently itch my nose by pushing my lip up either on my own or with my mouth stick. I noticed my lip kept feeling sticky though the last several days, but wasn't sure why. It finally dawned on me that it's likely coming from the glue residue on my nose. Such is the quad life, getting myself in sticky situations.

I have been attempting to wash more, and itch less, and it seems to be helping. I'm thankful for simple solutions and learning to adapt with changes. Next week will be another project from this doctor's visit, if my mouth isn't stuck shut.

Down to Two, Maybe

I have been making my regular summer visits to my doctors since mid June. A few weeks ago, I saw my dermatologist to check on my pressure wounds. They have been doing well, so I was looking forward to hearing his comments.

One of the areas has been giving me trouble for 13 years. Thankfully, as we had hoped, the doctor said it looked like there were no longer any open areas, just new tender skin. Therefore, he decreased treatment from two times a day to only once a day a few times a week. I still have two other open areas, but I was very thankful to hear the good report.

Every day, I also check my skin with mirrors to monitor problems and see if anything needs attention. Looking at an area that has had tape and gauze for over a decade to just observe skin again was exciting to finally see. Yes, I get enthused over odd things, but it's part of the quad life.

Thursday morning, I had an early doctor's appointment in Des Moines that didn't take long. Instead of coming straight home and in bed, I decided to enjoy the nice weather and free time. After a picnic by the river, Sara and I took about a casual stroll around the bike paths below the nearby dam. It felt great to be out enjoying God's creation and giving thanks for His care.

Friday afternoon, my supervisor from the nursing agency came for her regular 60-day paperwork. As part of it, she measures and documents my skin problems. The two areas were 0.1 cm smaller than the previous visit. It isn't much progress, but better than nothing. However, carefully examining the third area, she found a tiny opening in a fold of skin. I'm not sure if it was there when I saw the doctor and he missed it, but it wasn't what I wanted to hear.

With or without the new finding, I will still be continuing my schedule of sitting for 45 minutes and down for several hours. It is what I have become used to the past few years anywhere and I have almost forgotten what is was like to have more time. No matter what, I'll continue to rely on God's healing and direction, whether I have two extra holes or not.

August End

Every morning, I say good morning to Alexa (Amazon Echo) and hear something about the day. Yesterday, she said August 1 means the start to the last month of summer. This year, it feels like summer hasn't really happened.

I have gone out on the deck a few times this year to get sun on my legs, but that has been pretty much all I have done. Normally, I enjoy getting out in the warm months and be active. Getting supplies at Walmart when school is out can also be an adventure. I have run into kids I've had in class before and it's fun to watch what mischief children can get into when parents aren't watching.

Of course this summer, the world has been told to stay away from everybody, wear a mask, and most activities were canceled. The few doctors appointments I have gone to say masks are required to enter, but most of my specialists eagerly say I can take mine off and allow for better breathing.

A few days ago, I read a lengthy article from several doctors saying how masks really aren't needed for most people. It also says that effective treatment is available, but the information is being suppressed. Last week, Grace Community Church in California, with Dr. John MacArthur, held church despite California's restriction that church services not be held. I watched the full sermon, as I often do, but agree with the reasoning to meet.

In a few short months, America will again have presidential elections. An increasing number of reports are saying the pandemic will be used to persuade voters and likely return the country to another lock down. I pray it doesn't happen, but fear it's likely to happen. Especially depending on election results in November.

As 2020 continues, it is a year that will be remembered, but many want to forget. Much of the world seems to be heading toward complete chaos without any control, and sound similar to what has been predicted in the Bible.

For the last month of summer, I hope to get out a few more times. If the quad life will continue at home for the rest of the year, it will be another long season to come.