Adjustments

It's another week and time for another update. I have been sitting in front of my computer contemplating what what to write as it has been a fairly calm week. However, that doesn't mean nothing happened.

In January, I was notified that my request to continue with my caregiver hours was denied. The decision was asked to be reconsidered, and I have been waiting to hear since February. On Monday, my case manager called to say the hours had been approved, but only for six months. The six months that were approved are January-June. This is the end of April.

Unless I missed something, time travel is still not a thing. Therefore, we can't go back to January-March to increase hours. April's time had to be approved in late March and can't be changed either. That means the approved six months is actually just two. Yet again, more meetings and decisions will be coming.

I also decided to do a small medication experiment this week. Every morning, I take an allergy med that should last 24 hours. About 1.5-2 hours after I take it, I have a hard time staying awake. I therefore thought it may be better to take it at night with my sleep meds instead.

Wednesday and Thursday went by without much noticeable change. Friday morning was also fine, but then I started getting congested. I ended up getting suctioned five times in about six hours along with an extra chest treatment.

In order to keep junk from settling in my lungs, I get turned from side to side as needed. Sara, my daytime caregiver, had a busy day of rolling, repositioning, and keeping me able to breathe. As discomfort in my lungs continued, I started to wonder if I would be visiting the ER.

Thankfully, it started to improve toward evening. Dad did not need to suction, but still had to roll me a few times. Friday night also went pretty well, but Saturday morning had a stuffy nose and slightly sore lungs again.

I was last tested for allergies over 20 years ago and just take the medication as precaution. With this week's testing, I'm wondering if I need it more than I thought. Even though it says it's a full day, it doesn't appear to work as advertised. 

As I'm writing, I'm formulating a plan to get back to the regular time without missing a dose. Sometimes, trying to make a small change to improve the day ends up doing the opposite. Friday's reaction may have been completely unrelated to the medication change, but it's extremely unusual for me. Such is the quad life. I look forward to one more week at home before one with almost daily outings. 

Cold Week

Weather in the Midwest can change dramatically from one day to the next, and even within a day. January started out with mild temps and then had a number of days in the 50's and even up to 60! Unfortunately, the saying goes that if you don't like the weather, it will change. Even if you do like it, change will come.

This week has been quite cold with lows below zero. Friday morning, my Amazon Echo reported a wind chill of -34. These are days when I'm thankful that I can stay in my warm home, under blankets, and not have to battle the cold. It has been a few weeks since I left the house, but I can still join in various activities virtually.

I'm not the only one living the quad life who hibernates for winter. Earlier this week, I was messaging with Beth, a friend in Ohio whose son Alex has similar needs to mine. He hasn't even been out of bed in several weeks, but he has an even harder time with temperature change than me.

Their family also has trouble with funding and caregivers, but much worse than me. Other than a few hours a week, they don't have any help. With just Beth and Alex, they do what they must to keep going. At night, Beth sleeps near to her son and has always woke up to any needs, until this week.

When using a ventilator, it really dries out your airway. To counteract this, different humidification systems exist to put moisture in the vent tubes. It works, but water eventually builds up in the circuits and needs emptied out. If left, it can block air from being received or dump water directly in your lungs requiring immediate suctioning. I had both situations happen a number of times in my regular vent years and know the feeling well.

A few nights ago, Alex had the situation where water needed emptied from his vent tubing. He did his regular routine to wake his mom, but she stayed asleep through several attempts. Alex enacted his emergency protocols by having his Amazon Echo call designated people that can help, but Beth woke up before further action was needed, but it served as an alarm to current problems.

I have a similar setup to Alex, but have thankfully never had to use it. Living at home is still generally safer than a care facility, but the shortage in nurses is not just a local problem. During these cold periods, I also think of elderly who stay in their homes. It can be days before they get checked on, and it can result in major health problems if they fall, or similar, and can't get help. 

Spring is about six weeks away and the hopeful warming trend with it. Getting out in the community helps to lighten spirits and remind the world we're still here.

Learning More and Preparing

It is the first weekend of December, and it's feeling like a repeat from last week. We received more snow yesterday and the night nurse wasn't able to come. I pray this doesn't become a trend until spring. Thankfully, this week was fairly calm and provided time for work and learning my chair.

When my chair was dropped off a few weeks ago, my caregiver and I checked if my feet would reach my bike petals. They did, and we left it at that. This week was my first time actually biking while sitting in my chair, and it took some trial and error.

I started using the FES bike in July 2015 with my Action Arrow. In August that year, I received my TDX SP and used it for every bike session since. Therefore, we expected to have a learning curve in using the new wheels.

First time biking

Thursday took nearly a full hour of adjusting electrode placement, testing wire reach, and seeing how to access connections. Getting the four electrodes on my glutes was the biggest challenge. We quickly discovered that the placement we used for the last decade won't work, but further on my hips did. Eventually, after some popping knuckles and wrists, my caregiver and I figured it out. Friday went more smoothly, but we still have a few areas to adjust.

Since early November, I have been putting drops in my trach button to try to open the plug at the end of it. They have helped some, but the month of use hasn't completely cleared it. In some positions, it's just as blocked as it always was. It is also making suctioning very difficult. The catheter can get through, but any junk it picks up gets scraped off by the flap at the end of the button. Friday night, my caregiver tried clearing my lungs twice, but wasn't successful. I was eventually able to clear it on my own, but that isn't always the case.

This coming Thursday, I am scheduled to have surgery to open up the trach stoma again. The last time I had surgery on my trach area was around third grade. I'm thankful it has been over 30 years since I needed more serious work on it, but it is still frustrating to need intervention. Since I have full feeling of my trach area, it will also be one of the very few procedures I've had that I will fill the aftermath. I don't expect it to be anything major, but still a different experience.

Even after 40 years of living the quad life, I learn new things. Heading out to Des Moines in December is also something I haven't done in many years. Whatever may come, I know God is in control and I look forward to my neck being fully open again as it should.

Closing Wrong Hole

When you use unique medical equipment, you should expect odd things to happen. I used a regular trach for 30 years. In 2015, I switched to a trach button and have primarily used it since. Now, I am the only living person I know that uses such a device.

The button consists of two parts, an outer cannula that stays in place and a closure plug that inserts into it. In order to suction, the plug is removed and then the cannula keeps everything open. On Monday, my caregiver went to clear out my lungs and removed the plug. However, I couldn't tell it was out.

Normally, with the plug out, I'm unable to talk due to an open hole in my neck. Since I didn't notice the plug was out and could talk normally, that meant something was blocking the end of the cannula. Suctioning wasn't a problem, but  The same thing happened Wednesday and Thursday. Therefore, I called my ENT and they were able to work me in Friday.

After explaining the situation to doctor, he put the familiar scope through the button to see the end had grown over with granulation tissue. With my pesky persistent pressure sore problems, I take a couple meds to promote skin granulation. They don't seem to help my ulcer, but apparently granulation happened at the end of my trach cannula instead.

I was halfway expecting him to say I needed surgery to clear out the area. It may still be a possibility, but for now, I'm using medicine instead. Three times a day, for the next two weeks, we have to put three drops of a steroid inside the cannula. The hope is that this will clear out the blockage and restore regular function.

As I write this on Saturday, I have had three treatments. Just this morning, I noticed a little air escaping when the closure plug was removed. That means a small opening has already developed and the medicine is starting to work. That's great news, and I hope it continues. When I start feeling the drops go directly in my lungs, I guess it will be cleared. No matter what though, my doctor said to continue the full coarse of treatment. I'm scheduled to preach next Sunday, so it could be interesting if my lungs don't like the drops.

Living the quad life definitely runs into unique situations. I'm thankful God has given us medicine to help with problems in this fallen world. In some ways, I can also learn from the situation and help someone else if they also look at a trach button. Hopefully no unexpected doctor's visits this week, but I never know what tomorrow will bring.

Practicing what I Preach

Sometimes we learn while we age, other times we just age. This past week had some of both situations that I will need to keep in mind for the future.

My first sermon was given in November 2017. I preached on why we have suffering in the world, how it makes sense with God's love, and how we should respond. A week later, I was in the hospital with stomach problems, great pain, and a period of severe autonomic dysreflexia. Therefore, I got to practice what I preached. After I was back to normal health, my friend John suggested I should preach on what happens when a friend encounters sudden wealth. I have not preached that topic, but I've given my first sermon at other congregations without trouble.

Last Sunday, I preached from James who said to consider trials a great joy. The text refers to trials of faith, but isn't limited to this subject. Just prior to preaching, I received an email from my nursing agency. The scheduler let me know one of my night nurses has requested indefinite leave starting August 11. She normally works every Thursday-Saturday, but those nights will now be open. My other night nurse agreed to pick up one more day a week, but it means almost every Saturday night will be open. 

Staying up nights is hard on my parents and we all go with little sleep. After two nights in a row, we're nearly zombies by Sunday morning. I already have two preaching times scheduled in August that will be affected, but I'm not planning to cancel. It means any further requests for this year may get denied though. This morning, I preached on the importance of fellowship with friends and other Christians especially. I don't mind if I practice this more.

Friday was also my second attempt to get my trach button changed. This time, we had all the necessary parts and everything went well. My doctor did say the area in and around the hole for the button looks angry from infection though. More samples were taken and will hopefully produce results that give answers.

With one mouth stick, I've never tried juggling. However, it feels like living the quad life is a juggling act to keep everything moving as needed. This week has a full calendar as well, so I will see what God brings. 

Importance of Preparation

Another week has come and gone and it's Sunday afternoon once again. Thankfully, my breathing has continually improved. I was able to go from late Tuesday until Friday afternoon without needing my lungs cleared, which is near my regular routine. However, it was also a week of reminders to prepare.

Over the July 4 weekend, flooding in Texas was in the news. Several people were killed in flash flooding, including many children, when a storm produced much more rain than expected. The Quadalupe River quickly flooded its banks and ripped through homes, camp sites, and a girls' summer camp.

When Jesus was confronted with tragedy in His time (Luke 13), He answered "Repent, or you likewise will perish." Times like this call Christians to offer comfort, but also a reminder that we always need to be ready to leave this life and enter eternity. On Friday, I was also reminded to check supplies carefully.

For the past several months, I've had trouble with my trach button. My ENT and I decided to change it after a few weeks of treatment around it. That requirement was fulfilled, so Friday was another trip to Des Moines to see the doctor. Before leaving, I made sure to ask my caregiver if we had a new button. She confirmed she had checked just prior to leaving Thursday and all was good.

Unfortunately, when we got to the doctor's office and went to unpack everything he needed, the button wasn't found. My doctor was understanding and didn't charge for the visit, but now I need to return in two weeks. Upon returning home, the missing hardware was found and put in my travel bag. We don't know what happened, but learned a lesson in checking more than once.

Living the quad life is quite the journey sometimes. I'm thankful to have improving health and look forward to a very busy few weeks ahead and getting used as God allows. 

Working to Breathe after Traveling

Living through four decades of the quad life, I have learned a few things about lung health. One, I cannot continually go between warm and cold environments as my body can't take the rapid change. Second, I need to make sure I move regularly and not stay flat in bed for long periods. Both these lessons were learned by doing them and then ending up in the hospital with pneumonia. Unfortunately, I did both of these scenarios and added a third irritant just for good measure.

Sitting in a cabin to chat

During my trip, we brought one of my regular night nurses. This was my first time traveling with Michael and my parents and I wanted him to be able to enjoy the excursion as well. Therefore, after my parents took over at 7:00, we stayed in the hotel for a few hours so he could sleep. We did this three mornings in a row, which meant I was in the hotel bed for 11-16 hours straight. I turned on my sides at night, but the beds aren't easy to move me on and tried to decrease work as much as possible.

The weather in Indiana and Kentucky was wet, but nice temperature. We got caught in a couple down pours, but made it through. Just like in previous years, the buildings at camp were very well air-conditioned and visiting cabins was rapid adjustment. Our hotel rooms were frequently quite cold for my preference, with the air-conditioning nearly constantly running. Two scenarios are down, but one more came.

Wednesday and Thursday nights were in one hotel in Kentucky. Michael and I noted our first night that the AC sounded funny, but it worked. Thursday evening, I was in bed while my parents and I hung out until Michael had a nap. Even though it was on the opposite end of the room, it felt like the frozen air was pointed directly up my nose. After a while, my lungs started to feel sore with every breath. I asked dad to turn off the AC for a while and pull up the sheet, but it was too late. It wasn't long before I needed suctioned as well. Clearing out my lungs isn't unusual, but I normally need it 2-3 times a week. By the time morning came, I had already been suctioned seven times.

Ready to head home

I had Michael turn me to my sides to keep junk draining from my lungs, but it only helped to delay the procedure. Friday morning, we left as early as possible and let Michael sleep in the van. I suctioned once before leaving our accommodation and didn't like the looks of what came out. For the ten-hour drive home, we had to stop and clear my lungs twice, but thankfully not like over night. Michael also wasn't feeling the best, so we both suspected the hotel's AC had mold or something. I had hoped getting home would clear up my breathing, but it didn't.

The routine of suctioning 6-10 times per day, and constantly turning me to help my lungs, continued over the weekend. A trip to the local ER on Saturday didn't produce answers, but an antibiotic was ordered just in case.

Monday morning, I called my supply company to order more sterile gloves and suction catheters. The 60+ tubes I had before leaving would normally cover more than a month, but they were dwindling rapidly and would soon run out. Late Tuesday afternoon, a box arrived from the company, but it didn't contain what I ordered. It wouldn't be until Friday when I finally got my order, but not all of it.

Thankfully, suctioning has decreased to 4-5 times a day, with occasional long stretches between. My lungs are sore, and I'm tired, but a second medication has started and will hopefully help. I likely won't ever know for certain what exactly set off this round of illness, but I need to pay better attention to lung health. It's unlikely I will be traveling again, but I'm thankful for the time away and the experiences enjoyed.

Three Beeps

As technology continues to increase around us, we become more familiar with its sounds. Going to checkout lines at stores, we hear beeps as each item is scanned. At home, the beeps of a microwave, or oven, signal that our meal is ready to be eaten. When you can't breathe on your own, beeps from the device you're connected to are especially important.

For a quarter century, I knew every alarm from my ventilator very well. A short beep indicated high pressure and something was clogging the tubes, or me. A continuous alarm indicated low pressure with either a tube disconnected or I was breathing too shallow while sleeping. In 2010, after receiving my diaphragm pacemaker, I had to learn a new system of beeps from my electronic attachment.

I know well that two beeps in rapid succession mean the battery is low and needs changed. The initial warning supposedly indicates 24 hours remaining, but I've never tested it that long to see. If I didn't already realize I wasn't breathing, a series of three beeps followed by two more mean it's disconnected and not working. I learned a few years ago this is an international standard that indicates a major medical warning. In other words, beeps have become so integrated into our world, they now have national standards. Starting around late November, I heard a new sequence of three beeps I wasn't familiar with.

They happened very rarely and seemingly with no apparent cause. My breathing wasn't affected, so I let it go for a while as an oddity. A few weeks ago, I finally asked Synapse Biomedical, my pacemaker's developer, what they meant. They had me send pictures of the wires that come from my chest to try to spot any damage. Everything looked fine to my caregiver and I, but they spotted something that could be the issue.

Communicating by email Wednesday morning resulted in a company representative flying in and standing at my bed side Thursday afternoon. He moved wires around in every direction, but couldn't duplicate the beeps. Therefore, he carefully trimmed the delicate wires that protrude from my body and reconnected them as normal. Everything seemed to be fine, until the three beeps were again heard Friday morning. They continued sporadically last weekend and early this past week as well.

In frustration, I had my caregiver change the cable that goes between me and the DPS control unit. Since that change Thursday morning, the beeps have yet to return as I write this on Saturday evening.

Living the quad life has days of uncertainty, guessing, and learning. This week I learned that my beeping electronic friend may just be saying a simple change is needed. I'm also thankful for quick response to problems and the reminder from God of every breath He provides.

Crashing Oxygen, Third ER Trip

Monday morning, September 30, my nursing student caregiver, Brenda, started my regular morning routine. She had last worked on Wednesday and I wanted to get her caught up on everything. However, my voice had gone from regular sound and volume the night before to a soft squeak. Even with getting some sleep, I was very tired. I asked Brenda to take my blood pressure, and it was 88/54, only slightly below my normal. Taking it an hour later found it to be 78/45.

After her regular class, Brenda returned around 11:00 and I asked to get undressed and turned on my side to try to rest. As soon as I was turned, I felt very strange and not well. We stopped mom as she was leaving for work, Brenda could no longer find my blood pressure and my oxygen was reading in the low 70's. Mom called 911 and the familiar EMT's from the previous week were soon in my room. Before transferring off my bed, they put me on a large amount of oxygen to help stabilize my numbers. With Brenda at my side, I now took my third trip to the local ER in less than a week.

More tests were started, including a CT scan of my upper body. Despite being cleared from having pneumonia the previous evening, this was now my diagnosis by 3:30 in the afternoon. I would now be admitted again for an unknown time period. The air mattress and supplies dad had removed from the hospital the day before needed to return again.

Later that evening, in my new hospital room, mom and I went over my cares with the nurse, including bathroom needs. My routine was apparently unheard of, and likely not necessary, according to the 30-year veteran nurse. Once again, my parents were responsible for my care and stayed with me over night. At least a tube in my nose for oxygen was easier to manage than an NG tube.

Wednesday morning, I was down to 0.5 liters of oxygen in order to maintain an O2 saturation of at least 90%. Brenda came to stay with me and give my parents a much needed break. The hospital took my oxygen tube off to see if I could well enough to go home. Eating lunch very slowly, Brenda monitored my stats and when I needed to stop and rest. With numbers barely within range, I was released to return home Wednesday afternoon. Getting in my chair, it felt like I could pass out, but only Brenda and I shared this information so I could get home.

These three updates were written on Saturday and Sunday, October 5-6. Since returning home, I have been very tired and have taken several naps. I'm also having other quad life issues that I hope resolve soon. My friend John monitored my email, but I'm still behind on clients' updates and getting out monthly invoices.

Through this experience, it is an apparent reminder to never take time for granted or depend on each day going well. Sitting in a dark hospital room at night, five minutes seem to take an eternity. Looking forward to getting my mouth swabbed so I could get a few drops of water was a major highlight. I also know God has provided everything I need, long before I'm aware.

I pray it will be several years again, if ever, that I have to go to the hospital via ER. Whatever comes, I will trust in God's plan.

Scratchy Barefoot Preacher

I have had my YouTube channel, The Quad Life, for a few years. The intention of it was to show life as a quadriplegic and how I do things. For more than a year, that plan worked well and I demonstrated what life is like. However, I sit in bed in my room most of the time and each week isn't much different from the rest. Therefore, without redoing what I have already done, I ran out of material. I still cover changes like returning to a trach, but that kind of thing is thankfully rare.

Therefore, I started a new series on my channel that I call the Barefoot Preacher. So far, I have released three videos that cover an introduction and a few basics of Christianity. It isn't much different from previous preaching series I've done, but I hope for it to be more of a long-term goal.

Unlike previous Bible themed content, I have more of a plan to cover some of the problems going on in society, comparing major world religions and so on. If nothing else, it's good practice to keep my preaching skills active while I'm not visiting churches. However, I am noticing a change in myself I don't like.

Saturday, I was editing a short preaching video and added text for the viewer to read while I read from the Bible. I have done enough videos to be familiar with my own voice and I noticed yesterday I am much scratchier than I have been in the past. I'm also pausing longer when taking a breath which makes it harder to follow what I'm saying, even for me.

Right now, all I have scheduled for spring is speaking at a school's morning chapel service. I sent messages out on Friday to schedule school visits, but don't have anything planned. With every day that passes, it seems like I'm noticing more trouble with breathing and therefore speech. I think I may need to concentrate more on going back to a trach button before doing a lot of public speaking.

No matter what happens in the quad life, I know God is in control. Moses had trouble speaking and God used him to free the Israelites. Paul also spoke with trembling lips, but was used to greatly spread the good news of Christ. I'll pray for an improvement in God's time and maybe learn not to be as particular on how I'm speaking and more to what I'm saying.

Tiring Week

The first week of the year has started off quite slow with challenges. Unfortunately, I continue having a lot of congestion in my lungs even a full month after returning to a trach. 

I have had to suction more often and try to clear my lungs on my own as much as possible. It's a fine balance of deciding what to try in order not to make my lungs sore. Suctioning is generally faster, but can take several tries to get the correct area. Clearing on my own can take quite a while and a lot of tiring work, if possible at all.

Tuesday, I had planned to ride my bike and record a video. Unfortunately, with lung and stomach issues, I ended up staying in bed all day working on health issues. The change in plans did help me get first of the month billing and paperwork complete at least. Thankfully, by the time my day caregiver left at5:00, I was feeling better.

On Friday, I did get to take a bike ride after more than a week off. For the last several sessions, my legs have been quite active. On my last run of 2022, they pedaled on their own for nearly eight minutes. I was quite impressed that I burned an entire calorie with combining about three rides. On this week's ride though, they didn't get up to three minutes.

It has been 7.5 years since I started using the FES bike. I'm very thankful for the improvements it has given in my muscles, circulation, and pressure sores. However, I have yet to figure out why my legs will do more one time than another. The settings are always the same and my daily routine doesn't really change either. Whatever the cause, it is great seeing my body doing some work with my own muscles.

For 2023, I gave myself a challenge of posting a daily Bible verse on social media that corresponds with the date (such as Genesis 1:1 for 1/1). It has gone well this week and will be a fun exercise that has gone well so far. I'll see what another week brings, but I hope it will be more energetic with easier breathing.

Upgraded Breathing

On November 15, 2010, I had surgery to implant my diaphragmatic pacemaker system. In the 12 years since then, I have used the system to breathe and have generally enjoyed it. However, I had to get used to infrequent checks on the system.

For more than 25 years, I was used to having both my ventilators checked for maintenance every month. With the DPS, few hospitals are even aware of the system, let alone having people to come check on them. After getting the implant in 2010, I went home with two control units, or the actual pacemaker, that makes the system function.

Around 2012, I had my settings adjusted to get a larger breath. That process meant new pacemakers were sent to me with the different stimulation settings and I sent back my existing units. Therefore, I received new controllers at that time, but haven't since.

After some communication about a wire concern in October, it was realized my pacemakers hadn't been updated for quite some time. This past week, a representative from Synapse flew from Ohio to Des Moines to meet with me. He exchanged my old controllers for new versions, discussed changes, and any problems we could work on.

It was nice to get excellent attention when needed and I like the look of the new units. They work exactly the same, but are smaller than what I've been using. Other upgrades allow me to use a regular alkaline battery instead of lithium in case supplies are hard to get. I'm hopeful I won't need to do that, but it's good the option exists. Alarms have also been changed, which will take getting used to, but it now meets some international alarm requirements.

Living the quad life means using specialized equipment that is fun to watch improve. Of course breathing independently is best, but I'm thankful God has given us this technology to help in our fallen world.

Grilled Joel

The problems with my trach button have been continuing. This past week was another appointment to try to fix the issue. However, I wondered if I was actually participating in an experiment instead.

Due to my caregiver schedule, I have very limited days that I can go out to appointments. My ENT doesn't normally do procedures on the days I have this freedom, but he very graciously rearranged his appointments to make a time that worked for me. This part was relatively simple, but the procedure was delayed for several weeks due to maintenance issues.

Since previous attempts haven't stopped the drainage, my doctor wanted to go more drastic. This time, he would take a laser and burn off excess skin around my button. However, this process produces smoke that could contain viruses and it needed contained. Unfortunately, the smoke vacuum was broken and we had to wait for parts.

Tuesday morning, I got up quite early to get to my 8:00 procedure, but still ended up arriving 20 minutes late. After numbing my button area and putting on special glasses, the ENT started to laser around my trach. As he did, I noticed a nearly constant stream of smoke floating past my face and up my nose, with an unpleasant smell. I joked that I was being grilled while my thoughts wondered why we waited for a vacuum to be fixed that apparently wasn't doing its job.

After about 15 minutes of grilling around my neck, and adjusting the suction to collect smoke, the procedure was complete. With the early start, I considered doing other activities in the city, but ended up returning home. It felt somewhat odd to get home from a doctor's appointment around the time I'm usually leaving.

It has been a few days since my grilling and I'm not sure if it has helped or not. I will give it more time to heal, but it's part of living the quad life. Medical procedures are not like mechanics where one change solves the issue. Taking multiple tries, and then more, are sometimes required to find the solution. I pray we will soon fix it though and I can have less discomfort and not go through 2-3 shirts a day due to neck junk.

Black Button

For the last few months, I have been having trouble with my trach button putting out a lot of junk. I have written about it earlier, but once again had it looked at this week.

Tuesday afternoon, I went to see my ENT in Des Moines. Even though testing said I didn't have an infection in the area, I still wondered if that was the problem. When I saw the doctor and repeated what has been happening and my thoughts, he was certain the issue is coming from granulation tissue. That is small skin growth, or skin tags, around the button trying to close the hole and response to the plastic button.

I eat a lot of protein and take medication to promote skin growth in order to heal my pressure sores. Unfortunately, it appears a necessary hole in my skin is quicker to repair than the area I want to target.

This doctor is also knew to me, replacing my previous ENT who left to work over seas in 2021. Therefore, I try to emphasize my history and previous trouble with infection in the area. No matter my concerns, he took several swabs of silver nitrate to zap all skin tags, just as he did in May. This resulted in a black ring around my button that I was told not to touch for a few days. I would post a picture, but it wasn't a pleasant sight.

Returning home, I made sure to pass along the instructions to my next caregiver and wear a shirt with a very low neck. The treatment also made my neck, and throat, sore which made me try to minimize movement and speech as much as possible.

By Thursday, I allowed my button to gently be cleaned and remove the blackness. The area was still sore, but it looked better at least. It is now Saturday afternoon as I write this and it appears the treatment has helped some, but still not as much as I had hoped. I am scheduled to preach next Sunday and hope to wear one of my new shirts I recently purchased. However, I don't want neck gunk on it the first time it's worn.

Thankfully, I have been blessed with a very healthy quad life and have had relatively few problems. I know this is an issue other quadriplegics regular deal with, but I'm praying it will not become something that's a regular battle. I will see what God has planned and look to Him for whatever comes.

Nose Job

For nearly two years, I have had trouble at night with my nose getting clogged and having a hard time breathing. My Ear Nose and Throat doctor (ENT) said it would take extensive surgery to correct the problem. Therefore, I have been using nose strips and just trying to deal with it. Unfortunately, I started getting allergic reactions to the strips' adhesive and had to stop using it.

My long-time ENT also left his practice and went on to do volunteer work in other countries. When I met my new doctor, I talked with him about the problem and he said it was a simple procedure done in the office. Since I can actually feel my nose, I hesitated about getting work done, but was tired of not sleeping at night. Therefore, I made an appointment for the last Monday in November.

Dad took me to Des Moines and after getting to the procedure room, two bad tasting and smelling liquids were squirted up my nose to numb it. Sponges were also shoved in to provide further numbing and I was left to sit and wait. As the liquids did their job, I increasingly lost feeling from my sinuses on down my throat. I then remembered I had yet to take my noon medications and quick tried to before I couldn't swallow. The attempt resulted in a lot of choking and wondering what I was doing to myself, but it worked.

One final shot, via needle inside my nose, was given for full numbing before the procedure began. As this liquid reached my stomach, my chest started quivering and shaking as the doctor said, "Ready?" I had him wait until the pulsating stopped, but then he put various instruments up my nostrils explaining as he went. At one point, as he warned, I heard the cartilage in my nose popping as he applied pressure. However, it was finally finished.

Tomorrow will be two weeks since I had this done and my breathing is almost worse than before. For several days last week, I was very stuffy and needed suctioning several times a day. My throat was also sore from the irritation and I had trouble talking. It has thankfully improved, but I'm still wondering if I made the right choice.

The doctor said it will take a few weeks for swelling to decrease and notice improvement. I hope he's right. Just when I think I've experienced everything in the quad life, something new comes up. I look forward to easier breathing at night eventually, but hope I don't need to wait until Christmas.

Banging my Head to Beat my Chest

Not having the ability to breathe independently presents a few challenges in life. Thankfully, God has provided tools to help take care of problems living in a fallen world. The item I talk about the most is my diaphragm pacemaker (DPS), but that's not the only item I use to keep my lungs in good shape.

Since I can't control my diaphragm, I can't cough on my own. I have learned how to manipulate my breathing to somewhat mimic a cough, but I still need help moving junk around in my lungs. Since the time of my injury, I have used a chest percussion treatment (CPT) twice, or more, every night. I have nicknamed the procedure my nightly thumping, or beating, and my nurses are happy to say it's time to beat Joel.

The CPT is simply a hand-held wand that vibrates and gets moved up and down my chest and back. Combined with turning from side-to-side, it helps keep any junk in my lungs lose and easier to suction out if needed. I can't feel it, but I'm told it feels good and I have woken up to nurses using it on sore shoulder or back muscles during the night.

For many years, the machine I used was called a Flimm Fighter. It worked well, but the cord between the machine's base and wand would break after years of getting wrapped up. After I gave my machine to be fixed once, it was replaced with a newer version that has all the mechanism in one piece, with a long power outlet to the wall.

The new version is smaller, but it's heavier for my nurses to hold and the wire between the wall and unit often resembles a pile of spaghetti. This is very prone to connections becoming lose and the machine not working. This has been the case for about the last six months with trading out my CPT with a loaner to get fixed. Mine gets returned, only for the problem to occur again a few weeks later. If it doesn't work, then the only option is to pound on my chest, and back, by hand. The cycle has become annoying and feels like I'm banging my head on a wall.

I started searching for an alternate solution, but few people use a CPT anymore and instead utilize a vest that does a similar treatment with air. However, it's not an option for me due to my DPS wires. In working with my new pulmonologist, he also doesn't know of any alternatives. Therefore, it looks like the cycle of equipment problems will continue. When I received my CPT back a few days ago after another round of maintenance, the solution offered was to hit the device on something and that should help it. When you're told to hit your medical equipment with a hammer to make it work, you know it has design flaws.

Such is the quad life sometimes. I'm thankful God has provided equipment that has helped more for 36 years. However, I think more frequently I should have pursued a career in engineering to help with medical devices. I will see if everything functions this week, but won't hold my breath (I can't anyway).

Wait too Long or Do too Much?

It was a busy week in the quad life, but not quite as busy as it could have been. However, what did happen continued to linger on for a time.

On Thursday and Friday, I had doctor's appointments scheduled in Des Moines. My primary day nurse, Sara, generally takes me to all my outings, whether for pleasure or health. Unfortunately, Sara called Wednesday night that she was ill and would not be able to come the next day. Dad has also been very busy at work and couldn't take the day off. Therefore, I called my doctor as soon as the office opened and rescheduled in a month.

Friday started out the same with Sara still unable to come due to illness. Dad was still busy, but was able to get the day off. Thankfully he, and mom, both went with me to the city to get my visit complete. While dad and I waited nearly an hour for my five-minute visit, I felt some junk start to come up in my lungs. It isn't anything too unusual, and I was able to do version of coughing to clear my airway.

Next on our excursion was to find, and eat, lunch. While we dined on our fast food, I kept feeling more stuff accumulate in my chest. As always, I had my portable suction machine with me, but it's hard to use in the tight spaces of the van. I continued to try to cough and move the junk around so I could breathe and hopefully wait until we got home to suction. After lunch, the three of us headed to our favorite fish store to restock my aquarium after most of the tank died.

Driving through the city streets, my lungs started to get more sore and I was having a harder time breathing. At this point on doctor days, Sara and I would have been heading home, but we weren't yet. Getting to the parking lot, I considered how dad could clear my lungs in the confines of the vehicle, but it didn't seem likely. I continued to try my breathing techniques to do what I could to wait.

Fish selection took some time, but the three of us eventually headed to our last stop, groceries. As dad navigated the streets, I had a few times I could hardly get any air. When he parked in the lot, I had him try to suction so I could get relief. It took some trial, but he figured out how to do the procedure. However, by this time, I had waited so long the junk was hard to get out of my airway and my lungs were very sore. Dad cleared out what he could, but it only provided a little relief.

Upon entering, the store had signs stating face masks required. I can't breathe with the covering on anyway, and the sore lungs made it even harder. I was very glad when our list was finished and I could exit the building to breathe easier. Finally, six hours after leaving home, we were home again.

With hardly going out for over a year, I'm not used to being gone for extended periods. Friday night into Saturday, my lungs remained sore and needed more suctioning than usual. By late Saturday, they were finally feeling back to normal, but I felt hot and tired after the experience.

As the world opens up, I need to be more careful in not overdoing. Also, I'll need to do better at not trying to hold off on needed assistance. I'm thankful for God's care through my parents and hope to continue heading out, but not too much.

Time, or not to Time

The end of October has been busy for speaking engagements. Last week, I posted about doing the virtual training with OT students. Friday morning, I was the chapel speaker at a small Christian school, and this morning I preached. Reviewing and keeping each presentation separate in my head was a challenge, but timing my talks was another issue.

When I started speaking at grade schools over 15 years ago, I carefully monitored my watch to see when my allotted time was up. I didn't want to take too much of the teacher's day and also keep the students' attention. I still do similar today, especially when visiting multiple rooms, but not quite as carefully and judge by how the kids are reacting. Colleges, I try to keep around an hour, but most are okay with going over and having less time with the instructor.

Last week's virtual class was very strict on time, but not the latest two events. I could go anywhere from 10-20 minutes with chapel and the remaining period would be filled with an activity. Therefore, I just talked and allowed however long it took. With preaching, I have started taking the same method. I very rarely look at my watch and primarily just go until everything I had planned is finished. Some in the congregation may not agree with this method, but I'm only an infrequent preacher anyway.

The big thing I worked on with my last two sermons was timing my Scripture reading. My biggest complaint, or regret, about my diaphragm pacemaker is pausing to take a breath every four seconds. I can hide it fairly well in normal speech, but not when reading. Therefore, I try to plan what to read, when to pause, and try to make it sound natural. Getting to read God's Word is a privilege that many people around the world don't have; and reformers like John Wycliffe gave their life for making the Bible available to everyone. I want to present it as clearly as possible, but the breathing quad life adds a challenge.

After today, I'm not scheduled to preach, or speak, anywhere until late November. That is also the latest in the year I generally agree to go anywhere. However, this weekend already feels like winter; hopefully it's not a prelude of what's to come in months ahead.

Getting Poked

In May, I was due to get my annual physical with my primary care physician (PCP). I didn't feel comfortable going to a doctor's clinic at that time and opted to wait a few months. It was my hope that mask requirements and restrictions would be gone, but that didn't completely happen. I didn't want to wait too long, so I had my annual physical on Friday.

For most people my age, I have heard physicals usually include getting your height and weight checked. Unfortunately, the small hospital I use for my PCP isn't equipped to do this for me, so I have to go on the last time I was weighed (two years ago) and guess if much has changed. I would like to get more accurate results, but it's not an option.

I went over my laundry list of medications with the doctor's nurse, and the doctor, and discussed any changes. He was glad to hear that one of my pressure sores finally healed, but I still have two to go. I'm thankful for any progress I hear.

After that, it was time for updated shots. I had to get an update on my tetanus for starters. Since I'm always barefoot, I need to be careful if I step on a nail somewhere. Then I got a TB test and finally, my annual flu shot. I have a few friends on Facebook that are adamantly against vaccinations of any kind, especially the flu shot. However, I have received one every year as long as I can remember and am a great example of being in great shape even with the shots.

Wearing a mask in the waiting area was as equally unpleasant as it has been all this year. Thankfully, every doctor, and nurse, I have visited quickly lets it be removed in the office. They have all agreed it's more important to breathe than the little protection a face covering provides.

Maintaining a healthy quad life is important to me. On Saturday, I spent the day with a low fever and not feeling the greatest, but it sometimes happens after flu shots. I'm not looking forward to the approaching flu, and cold, season again, but will rely on God's protective and healing hand.

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.