What's a Schedule?

In Proverbs, we read that man makes many plans, but it is the Lord's purpose that prevails. This week has been one of change and adjustment.

Tuesday, Sara, my day-time caregiver, thought the new skin area was looking worse. Therefore, I called my dermatologist to see if I could get in any earlier than my late July appointment. A few hours later, I had an appointment for Thursday that someone had cancelled. This was good news, but required rescheduling my hair cut. That is actually a challenging task, but was done.

My doctor wasn't too concerned and said it currently looks superficial. However, he doubled a steroid I've been taking to encourage protein absorption. He also ordered a new treatment to the area, but insurance is now debating if they will cover it or not. I'm thankful to be making more effort in this area, but that's not the only problem.

Every few weeks, my caregivers change a patch on the right side of my chest that connects to my diaphragm pacemaker. In the first few years I had it, I had trouble with wires getting damaged and not working. The solution at that time was to put some silicone gel to restore connection. That worked, but other improvements made this need obsolete and everything has been working well for at least a decade.

For about a month, when changing the patch, one of my caregivers said the silicone was getting sticky and adhering to the dressing over it. I consulted with my other caregivers and an expert nurse on the system, and they weren't concerned. Early this week, I had a different nurse change the patch, and he had the same issue, but maybe a little worse. Wednesday morning, I emailed a different technician on the DPS than I did previously to check his thoughts. He now has flight plans and should arrive Tuesday to work on my patch. What one person thought was fine, another says it needs immediate repair.

Things I had planned to do this week didn't happen and what I hadn't expected to do did happen. Late Tuesday morning, I spoke to a class of Occupational Therapy Assistants. One of their questions was if I could work a full-time job. I answered that I did a couple full-time temp jobs after college, but that was 23 years ago. At this point in the quad life, especially with my caregiver schedule, it would not be a possibility. It seems like I spend an increasing amount of time just trying to maintain my health. 

With all these unexpected twists, I'm especially thankful for my dad. He continues to make sure I have a working vehicle I can use and works at least full-time so I can keep medical insurance. As my physical needs change, I also become more dependent on his care when I don't have caregivers.

God has blessed me with great parents that do so much for me. I never know how long we will be able to continue, but am thankful for all the years so far and look forward to another week to come. 

Mounting Pressure or Something Else?

After preaching last week Sunday, I looked forward to a week at home where I could get caught up on work and prepare to preach again today. Monday, I did my regular routine of checking my skin for any problems. Both times, my front side looked fine as far as I could see. I don't often mess with flipping to my side and setup mirrors to see my posterior and often rely on my caregiver's eyes.

Tuesday morning, Sara my caregiver was doing my morning leg stretches and saw a bandage that normally doesn't exist. Further investigating discovered a new open area under my upper right leg that my night nurse must have seen.

It wasn't long ago that I saw my dermatologist about the sore on my left leg that I have had for years. He was elated at how good it looked and to keep up the good work. Since I saw him in late April, I haven't changed any of my routine and did not expect a new area to open.

Therefore, I made sure to bike all three times I could this week. Sara noticed my chair's seat cushion was a little spongy, so she pumped more air into it. I also slightly decreased my evening upright time in favor of laying flat more. Sara said it was looking better on Friday than it did Tuesday, but still existed.

With 41 years of living the quad life, this type of development isn't new. Even with that, it's still frustrating when it happens.

Logging in to write this week's entry, I was reminded of the treatment I had on the same leg just a little over a week ago. I haven't had trouble with treatment before, but the last time was three years ago. It's possible the combination of a few factors caused the issue, but I won't know.

Other than today's preaching, I only have one outing scheduled this week. I'll wait and see if I have to drastically limit activities or if the current changes help make progress.

Even with decreasing my time upright, I was thankful to be able to either complete or make progress on a few web projects. One morning, just before leaving my room to bike, I got a call from one of my clients that they were having email trouble. Of course I prefer everything to stay working, but the occasional need for help is somewhat fun. I get to research and find solutions then see if it fixes the problem. This time, one minor setting change fixed everything and they were back to normal operations again.

In some respects, when things are going well, we may forget to look to God and give thanks for all we have. When a problem, like a new sore, arises, then we call on God more quickly and seek His help in everything. You never know what a week may bring, but I can be certain that nothing is out of God's control. 

Retirement

For most adults, one eve they look forward to is retirement. While working at a job for decades, many people put money away for this milestone and look forward to the freedom it offers. Some professions allow for early retirement in their mid 50's, but not many.

After more than five decades of working various jobs, my mother was finally able to officially retire. It has taken a lot of planning and preparation, but I'm thankful she could reach this achievement. I wish my dad could do the same, but I still need medical insurance from his employer. Various ideas have been proposed, but nothing has come as a perfect solution.

While I'm thankful to see my parents slow down, it's also a hard dose of reality. One of the activities retirees do is help with grandchildren. It may be baby sitting younger kids, attending sporting events, or whatever the family does for fun. Grand children are a regular topic at church and with friends, but it is a blessing my parents, nor I, have been given.

With all the funding fumbles this year, we also have to be careful how my parent's activities may affect my benefits. Most people don't know, or care, about Iowa laws. If/when my mother takes retirement, it changes my government benefits as well and could eliminate some of my caregiver funding.

Unfortunately, living the quad life ends up discovering things that few people know exist. It is also rare that a child injured as young as I was still needs care over 40 years later. More of us are living longer and are realizing problems with the funding systems, but no easy solutions are available. 

This week, I have been following a friend's situation and potential new rules in Ohio. Alex is a fellow high-injury level quadriplegic and is 21 years post injury. His mom, Beth, is basically his only caregiver and as a result, can't have a regular job outside the home. Ohio proposed cutting off payment for family caregivers, such as parents or close relatives taking care of a person's needs. This would stop Beth's only form of income and leave them with absolutely nowhere to go. Thankfully, it appears that this ruling may be scrapped, but it still has potential.

These are times where we must remember God is in control. I don't know what the future holds for my parents, or multitudes of families in Ohio. However, God has said He knows our needs and to bring everything to Him in prayer. It can be hard to be patient and not grow anxious, but God has demonstrated many times that He is in control.

 This morning, I preached at a small church in eastern Iowa. A few days ago, they contacted me that next week was also in need of help and nobody else is available. Therefore, I'm scheduled to preach two weeks in a row. God has put me in a place where I can currently do this, so I am happy to help. It means another busy week of sermon prep, but I'm getting used to it. I will see what else comes my way as June marches on.