The Struggle: To Attend or Not Attend

Infrequently in my life, I am invited to attend social gatherings. The reasons for the lack of invitations vary from people not knowing how to accommodate my medical needs to people forgetting to inform me of the event. When I am asked to go to a gathering, it is always a tug-of-war inside me.

My immediate response to any invitation is “YES!” But then my rational self interjects and reminds the rest of my brain I have little energy. I need to see when the event falls in my schedule. If I have a medical appointment or need to get blood work done on the same day or on a day adjacent to the social, then I have to decline to attend.

But what about a gathering which does not interfere with anything else on my schedule? Then another battle erupts in which I have to weigh the pros and cons of going. How long will the event be? Will there be electrical outlets available to plug in my ventilator and heater/humidifier? How far do I have to travel to the event? Will it be noisy? How many people will be present? And the list of questions goes on and on.

I often wish my life was simpler. Before becoming significantly ill, if I was asked to go to a social, the question swirling in my head would not be if I should go, but what should I wear. I miss my old life and the ease of going anywhere on a moment’s notice. Life with chronic illness is hard, and it often times drains the fun from attending events.

Proactively Walk Out Your Faith

During the last several weeks, occasions have arise week after week in which small things have caused me to stumble in my walk with God. Someone would say a comment which would set off my emotions, and before I knew it, my emotions were leading me astray down the path of sin. After the incident, I felt terrible. I had failed the test. I had let God down. I had inhibited God’s endless teachings to guide me down the correct path. I was a terrible representative for God.

Over the weekend, I was listening to a preacher who was talking about actively living each day for God. We need to be constantly meditating on Scripture and should be proactive in our lives. We need to be ready for situations and act before our emotions take hold of us. I thought about this teaching over and over again and decided I should try to be more proactive in my life. The very first test would be a trip to the lab to get blood draw.

Yesterday, I arrived at the lab for my blood work. I consciously kept thinking about God and about ways to show God I loved Him. At the forefront of my mind the verse, “Love your neighbor as yourself” (Leviticus 19:18) remained constant. I checked in for my blood work and waited. When the lab technician called me back, a woman was at the lab front door trying to enter. The elderly woman had medical equipment and a mobility device. Although the lab technician was waiting for me, I decided to travel in the opposite direction to the front door and hold open the door for the woman. Once the woman was safely inside the lab, I then headed back toward the lab technician to get my blood work done.

While entering my information into the computer, the lab technician asked me about where I was on the lung transplant list. I knew at once, the woman was making a simple mistake. She assumed since I used a ventilator I must have bad lungs. A lung transplant would remedy my breathing issues. Although this may be true for some people, for me, my lungs are fine. I need a ventilator because my breathing muscles are weak. Getting a lung transplant will not improve my breathing issues.

I could have tried to explain to the lab technician she was mistaken. I did not need a lung transplant. But I have learned in the past, correcting someone’s lack of medical knowledge makes the person feel bad. So, instead, I chose my words carefully and said, “I am not eligible for a lung transplant.” This statement is 100% correct. I am not eligible for a lung transplant because my lungs are not the issue. You do not do a lung transplant on someone who has functioning lungs. But, this statement allowed the lab technician to feel as though what she assumed about my health was not errineous. The woman told me she was sorry I was not eligible to get a lung transplant. The situation passed without anyone’s feelings being hurt.

When I left the lab, I turned a corner to exit the building. An elderly man was shuffling along pushing a walker. I asked the man if he was going to the lab. He said he was. I swung around and opened the door for the man. He thanked me for my kindness.

For the rest of the day, I thought about everything which happened at the clinic. And for once, I did not feel terrible about anything which transpired. Instead, I was happy I was able to love my neighbor as myself to three different people. I smiled and thought perhaps I may have passed today’s tasks.

The Long Road to Recovery

Two weeks ago, my mom underwent surgery to repair and replace two discs in her neck. My mom had been having excruciating pain in her neck, back, arms and head for five months. Imaging suggested one disc in her neck had degenerated; another disc was ruptured. Surgery was needed.

After my mom had the procedure, the doctor said my mom’s neck was a mess. It was much WORSE than what the imaging indicated. Both discs were almost completely gone. It was bone on top of bone grinding against each other. Moreover, without the discs present, all the nerves exiting my mom’s spinal column at those two locations were being crushed by the vertebra.

Since surgery, my mom has been on the slow road to recovery. First, she had to recover from the surgery. Now, as her body is healing, her nerves are flaring up. Everything which was being compressed is now trying to heal. The biggest challenge are the nerves in her right arm.

After two weeks of recovery, I am happy to report my mom is starting to be able to do things on her own. Today, she was able to take a shower, she took a short walk and she is able to sit for short periods of time out of bed. I smile as I witness each milestone. The body’s ability to heal is such a miracle.

 

America: The Land of Great People

The last two weeks have been a whirlwind. I traveled with my mom many, many miles to comfort her as she under went a major surgery on her neck. The days on the road were long and filled with lots of traffic. When it felt as though we could not travel any farther, our destination to stop for the night appeared on the highway.

When we stopped, people were quick to assist our party. A gentleman saw my medical equipment and offered to help. He lifted my wheelchair out of the van. He was so sweet and kind. He felt honored he could assisted us.

At another location, our bellhop cart refused to move in the forward direction. A woman in the parking lot sprang into action and lugged the cart all the way into the hotel and even got it all the way to our hotel floor. I was stunned and amazed someone would go so far out of her way to help us. And the story of America’s kindness continues from hotel to hotel and from hospital to gas station.

The media likes to portray this country as one of division and filled with animosity. But the reality is this nation still stands on one of the Bible’s greatest teachings: “Love your neighbor as yourself” (Leviticus 19:18).

Happy Birthday America. May your kindness and generosity continue for another 245 years.

Trying to save a YouTube video

Today I filmed a YouTube video. I was very tired and was trying to get the video done quickly. During the shoot, I was interrupted. I had to disconnect my microphone. When I resumed filming, I must not have plugged in the microphone.

When I was editing the video, I was very upset one segment of the film had poor audio. The computer microphone recorded instead of the external microphone. The audio has an echo and is hard to understand. I could leave it as is, but since it is the introduction to my video, I decided to re-shoot the segment.

I carefully re-set up my camera to film. I hurriedly filmed the section. I was very tired and just wanted to be done filming.

A while later, I was editing the clips. I realized when I re-shot the introduction segment, I was talking really fast. I was really upset since this the introduction to my video. In desperation, I searched my editing program. I found a way to slow down the speed of my video clips. I slowed down my introduction to 95% of the original speed. Behold, my speech no longer sounded fast. I was thanking and praising God! I do not have to re-shot this section of my video again.

I quickly finished editing my video and saved the final version. I am so happy my video is finished. I am also grateful I learned a new skill on my editing program. Hallelujah my video is done!

 

Hoping for a great birthday present!

It’s another year, and my mom is another year older. This year, though, things have not been a cake walk. The worldwide closures have cancelled most my mom’s trips to various places around the world. She had incredible adventures planned, all of which were scrubbed one after another as countries continued to keep their doors closed to travelers. My mom found other activities to do and tried her best to keep herself busy.

In January, her neck started bothering her. She has had neck and back issues in the past. Over 40 years ago, she had a fusion in her spine. It seemed as though the pain was right above the fused vertebrae. She tried and tried to get in to see her doctor. It was a long arduous process to see her primary care physician. Then she needed to be referred to a specialist.

The process dragged on and on. Her pain grew worse and worse. She started having significant muscle weakness in her arms and shooting pains down her legs. After doing her own research, she found another doctor halfway across the country who is very knowledgeable about the neck. She was able to see the doctor. He informed my mom her neck is a mess. There are several things wrong with it. She needs surgery and needs surgery soon.

The surgery is scheduled for next week, but a big hurdle has to be cleared: insurance approval. The days are ticking down, but her insurance company has not given the green light. We are all impatiently waiting for the insurance company to make a decision. If my mom does not get this surgery and get the surgery soon, her symptoms will become permanent. Her spinal cord is being compressed. If the neck continues to degenerate, the spinal cord will be damaged.

So, this year for my mom’s birthday, if you could take time and pray for my mom’s surgery to be approved and for the surgery to resolve her neck issues, I would ever be so grateful. Thank you and Happy Birthday Mom!

YouTube Side Effect: Emotional Burnout

Since starting my YouTube channel, people have contacted me from time to time desiring information or guidance about tracheostomies and ventilators. Some individuals have wanted emotional support. I am always honored someone feels I may be able to provide some assistance to them. I help as much as I can. After a few messages or emails, the communication dies out.

Of late, the number of requests has dramatically increased. I am shocked so many people have urgent questions and medical needs. I spend a lot of time crafting my words. I know most of the people are in a fragile emotional state. I try not to say anything which may offend them. I try to stay neutral and always direct the person back to their medical team.

It is very difficult to tease out the questions which may be asked. The person may ask one thing, but in reality, the person has a question on something else. Or, as has frequently been the case, the person does not like the direction the medical team is going and wants me to chime in and tell the person he/she is right and the medical team is wrong.

It is emotionally exhausting for me to read heart-wrenching medical stories. I find myself crying as I read the words written by the patient or caregiver. I should not care about strangers I have never met, but I do. I also spend time praying and petitioning God for His help.

After spending far too many hours answering questions and assuring people their medical team are the best people to ask regarding their medical questions or concerns, I am burned out. I now understand why many people on YouTube put up fences. They do not get involved in other people’s lives. They do not respond to all inquiries from their YouTube viewers. They limit the amount of time and energy they dedicate to their YouTube viewers. As my channel continues to grow, I think I will also have to set boundaries. How this is to be done, I still have to figure out the details. But for now, I am taking a few days away from responding to people in an effort to rest and restore some of my energy. I am emotionally drained.