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.