Sunday, March 31, 2019

Spring Talk

This week officially ended my winter hibernation. On Tuesday, I spoke with a class of Respiratory Therapy students in the Des Moines area.

After several months of not doing anything, I always feel a little rusty getting back into speaking again. However, with doing some videos these past couple months, it wasn't as bad as previous years. It was a very quiet class though, which is not common for colleges. I have learned how to work with quiet grade school students, but adults tend to have follow-up questions.

Tuesday's presentation started off three days' worth of some sort of activity somewhere. I was exhausted Wednesday night, but have been getting back close to normal energy levels again. I'm still suctioning more often than normal, but it has improved as well.

Friday and Saturday were the first times I've been able to bike in nearly three weeks. At the beginning of 2019, the bike's software did an automatic update that now shows exactly how long my legs peddled under their own power. In January and February, they were going anywhere from 20 seconds to nearly a minute without the bike's motor assisting.

My legs felt pretty calm the last two days, but I was surprised to see they still did five seconds of unassisted peddling each day. It isn't much time, but I thought it was good after missing so much and not feeling well. After 34 years of the quad life, I've learned to watch for even the smallest of changes.

With my assistants and I feeling well again, my parents were also able to go on a short one night trip. They have been trying to for several weeks, but something always came up that it had to be canceled. We are all enjoying the weather beginning to warm up again and being able to get out and active.

April doesn't look too busy for now, but I have a few appointments I need to start scheduling again. Hopefully this week will continue to be productive and I look forward to more warm days ahead!

Sunday, March 24, 2019

Slow Recovery

It has been a tough week, but I'm glad to be through it and now looking back. On Monday, I visited another doctor due to still suctioning more than usual. He said the x-ray looked okay, but gave me a third antibiotic. This wasn't my usual pulmonologist and I was told I was likely a germ carrier anyway and they were just out of balance. I don't plan to go back to that physician.

When I got home, I learned that Aiden, the boy I posted about two weeks ago, had died. He was ten years old and had been a quadriplegic for nine years. His funeral was yesterday and the past few days have been spent seeing pictures and messages to his family. A mother of another quadriplegic said she recently learned of a woman who was a very active quad had died after getting this year's flu.

The past few months have been hard for a lot of people and I'm thankful to be recovering. I started breathing more easily on Tuesday and could actually sleep some at night. I'm still suctioning more than normal, but less than I was earlier in the week. In less than two weeks, I have used nearly 60 suction catheters. My normal is maybe 3-4 per week. I ordered more a few days ago only to learn my supplier is out and it will be a while until I can get more. That has made me especially thankful I'm getting closer to normal.

After almost two weeks out sick, my main day assistant returned Thursday. She still gets tired out easily, like me, but it was helpful to get back to my regular schedule again. I kept dozing off in church today, but made it home before really needing suctioned. On Tuesday, I'm scheduled to speak to a class of respiratory therapy students. I think I'll have more to cover this year with my last few weeks' experience.

I'm very thankful that I rarely have trouble with my health. For those with chronic problems, I understand how it can get frustrating and look forward to a time of ease. I pray this week will be back to the normal quad life, but I will try to take it easy as well. Spring weather the next few days should help and hopefully end the trend of illness.

Sunday, March 17, 2019

Sick Week

The flu has been going around southern Iowa with quite a few people ill. On March 4, my primary night nurse left early due to not feeling well and was gone for a week. March 8 had the same with my main day nurse leaving early and has been gone all week. Despite having the flu shot, I started having trouble Sunday.

It was finally decent weather, so I was able to go to church. However, it was too cold to go barefoot so as I sat in church, my arms and legs spasmed frequently. Halfway through the service, I could feel junk in my lungs that needed suctioned out. It's rather disruptive for me to leave during the message though, so I made it wait. The minister seemed to go on for quite a while, but I was thankful to get home. By then though, my lungs were already hurting.

Suctioning increased substantially the next few days along with temperature fluctuations, sore lungs, and congested nose. This week has made me both thankful and regretful to be using the diaphragm pacemaker as well. As stiff as my lungs have been, I know from experience that my regular ventilator would have had a difficult time giving me air. That quickly causes issues, but thankfully the pacemaker works differently and I still breathe. However, my clogged sinuses make pulling air in very hard.

Trying to breathe through what feels like glue in my nose has made me wonder about the vent again, but that would be more problems with my trach button. Thankfully, if I have a spasm, it sometimes helps partially clear my nose (I don't why, but it does). I've had my nurses and parents help move me more to cause spasms so I can hopefully breathe better.

My doctor assigned an antibiotic Wednesday along with Tylenol, Mucinex-D, and my regular meds. Friday prompted a change since my stomach started issues, but they have decreased. The pharmacy flowing through my body seems to be helping, but I'm still going from feeling okay one minute to lousy a short time later.

I'm thankful for the gifts God has given in the forms of medications and technology like the pacemaker. I look forward to returning to the regular quad life as well as sleep this week.

Sunday, March 10, 2019

Urgent Time

I've heard some people say they get a feeling something is about to happen. However, I notice the thought is often expressed after an event occurs. For probably about a year I keep feeling a large change is coming, but can't really give a reason why.

In several places in Scripture, we're reminded that time is short and that this life is like a blink of an eye. I've been having more of an urgency to get things complete and the last few weeks have been doing work on my book not only while sitting, but also when laying flat. It could be why my eyes have been sore some nights, but I'll ignore that for now.

I like the progress I'm making and going through old memories. When I get to a point that I say it's complete, I'm not sure what to do from there. Thoughts of publishing it have gone through my mind, but I don't see why anyone would be very interested in it. I could see going through the effort and expense of the publishing process, then maybe selling ten copies. However, the one person that has read all of it so far says he thinks people would be interested. I think it's rather boring, but I lived it.

Aiden and I tour camp
Through social media, I've connected with a few families that have kids with high level spinal cord injuries like myself. One of them, Aiden, lives in Indiana and I got to meet him in person in 2015. On Wednesday, Aiden was at school and suddenly went into cardiac arrest. After two hours of CPR and being air lifted to the hospital, his parents have been waiting for answers and test results. As of this writing, he did open his eyes and interact with his mom, but is having multiple complications and uncertain days ahead.

I also read this week about another country in Europe expanding euthanasia laws to now include children as young as six. With the way America has been going recently, I wonder when, not if, it will become part of regular "healthcare" in this country. Thankfully, I got my regular hours restored in January through another policy exception in state funding. It keeps getting closer that it soon will be more expensive to keep me home than in a facility.

After 34 years, I know God has given me an exceptional long quad life that few have experienced. As most people, I would like to leave something for people to remember me and possibly be helped by the life I've been given. When my time on this earth is complete, I do not know, but want to use what I can.

This week, I'm scheduled to start getting back out in the world again. With my two main caregivers sick, I'll wait to see what actually happens. Until then, enjoy the present of today and hope to be back for the next installment.

Sunday, March 3, 2019

Wrong Direction

Unless you don't live in the United States, it has been hard to watch what is happening in the political arena. Newly elected politicians started making changes early in January and it hasn't slowed down. When New York state passed a law allowing abortion up until birth, it was all over the news with applause and celebrated as a victory. Other states have looked at similar legislation, but I have yet to hear any that have passed.

Not only are babies allowed to be killed up to birth, but also afterword as well. If a child survives an abortion procedure and is born alive, the medical persons on staff don't have to provide life saving treatment. It is very hard to believe such situations exist in what is supposed to be an advanced, civilized nation.

This week, a bill was brought to vote that would protect these babies and require medical treatment given to them. To me, it seems obvious to have such a law, but 44 senators voted against it, therefore defeating the law. The culture of death has grown rapidly, and I have seen groups working to stop the trend.

Almost daily, I see emails or online posts asking for signatures to support something to decrease or end abortion. These efforts are good and I would love to see children protected from the moment of conception, but they miss the point. Changing laws are good, but they can easily be reversed again by the next generation, or earlier.

Where change is needed is in hearts and minds and individuals saying why all life is precious. Yes, 44 people voted that it's okay to let a baby born alive die, but those people were voted in by many more individuals. Christians need to be active in hearts as well as policies.

I'm praying to get out more this summer and to keep writing about this quad life I've been given. I don't know that I want to guess on what laws may be proposed by then, but I'll look to the lawgiver who is in control of everything.