Remember the world does not always like kindness

This week has been very chaotic. On Monday, I went to an event. A strange thing happened. Two people gave me compliments. I was shocked and stunned. As of late, so many people have vented their dislike of me, it was hard to accept kind words.

The following day, I met two new people. I did my best to be hospitable. Could I have done things differently? Yes. But I thought I was very cordial and tried hard to be kind to the people. The two people let me know they were displeased with me. As hard as I had tried and continued to try, the people did not like me.

Last night, I did something which is hard for me to do. I called someone on the phone. The phone call was one of concern. The person is having health issues. I wanted to get an update and ask if the person needed any prayers.

The phone call was a disaster. It was as if I walked into a land mine. The person was hostile towards me and was very upset I called. I wanted to ask the person a few things, but the phone call disconnected. I waited a few minutes, and then I called the person back. The person did not answer the phone. I left a message and asked the person to call me back. So far, my call has not been returned.

After the great start to the week, I need to remind myself there are those in the world who have an immense dislike towards me. I try to be nice. I try to be kind. But so often, as hard as I try, my efforts are met with disdain and hate. I have no animosity toward the people this week who were less than kind to me. In fact, I have prayed for them. They need peace, comfort and kindness in their lives. As much as I would like to give that to them, they cannot accept the gifts if they are unwilling to receive them. My heart aches as I think about these very broken people.

What is that smell...oh, it's me!

Many people in this world love showering. I am not one of those individuals. It takes a lot of effort to wrap up my IV line (PICC line) in plastic and keep it dry during my encounter with the water pouring down on top of me. I shower as fast as I can because the exercise in hygiene really tires me out.

And the part I hate the most is feeling "wet" for the next four hours (maybe more maybe less depending on the day). I do not like to feel damp. With having long hair, it takes about four hours for my hair to dry, and even after it dries, it still feels damp to me. My trach tube holder gets wet when showering, and it takes several hours for that to dry. It also does not matter how much I dry off my skin, my body just feels damp for several hours after showering.

With all that said, I do not like showering. I try to plan when I shower to when I film YouTube. My hair looks the best the day after I shower. So, I attempt to coordinate my showering with when I am going to film YouTube.

This week, my hair was a tangled mess from filming last week. (I usually have to use hair spray in my hair, but last week, my hair was doing its own thing. I had to use A LOT or hairspray to calm down my unruly hair.) I meant to wash my hair on Sunday because I had an appointment on Monday. However, that did not happen. I did my best on Monday to run a brush through my hair and pulled my hair into a braid.

My appointment went very awry, which caused me a lot of stress. Stress makes me sweat profusely. Even though I was freezing to death because the heat was not working in the building, after I left the appointment, I was drenched in sweat. When I got home, I stunk. I needed to shower. Unfortunately, I was far too exhausted to endure a shower.

A friend came in from out of town yesterday. I was able to meet her and talk with her. I hoped she did not notice that I really stunk. I was wearing several layers of clothing and hoped she did not breathe in when hugging me.

This morning, I took off my pajamas, and an awful odor hit my nostrils. I gasped to myself, "What is that smell?" I then realized it was me. I mustered up the strength and energy to take a shower by resting all morning. This afternoon, I endured the torture of taking a shower, and now I am battling my hair being wet and feeling gross because I showered. But at last, my hair is free from the hairspray, and I no longer smell.

Now that my hair is clean, I should probably film YouTube tomorrow. I have no scripts written and have no ambition. Perhaps tonight, I will be struck with an amazing burst of creative energy...if not, I will spend tomorrow lamenting that I have not filmed anything this week.

Happy New Year!

Time is a strange entity. My days seem to pass quickly, and yet, as I reflect that another year has passed, it seems like New Year's Day one year ago was so long ago. So much has happened. 

As I was riding in the car last night, enjoying a short ride through the neighborhood, I pondered the things I have done in the past on New Year's Eve and New Year's Day. I have celebrated at Disney World, Disneyland, Busch Gardens and have gone to the Rose Bowl Parade. I have done so many things, and yet, here I am doing what has been a recent tradition--staying home and resting. 

I watched the New Year's celebration in Hong Kong on television yesterday morning. I celebrated many hours too early because I knew I most likely would not be awake when midnight came. Perhaps one day, I might be able to travel to Hong Kong and experience it in person. The fireworks were quite spectacular.

My mom asked me this morning if I stayed up to ring in the New Year. I laughed and said, "I was in bed at 9:30 and was fast asleep by 10:30 p.m." (Our neighbors usually set off fireworks starting at 11:45 p.m. I slept right through their annual celebration.)

I hope this year is a year of health and energy. There are a number of things on my things to do list--continue writing my book, working on YouTube videos and sorting out some medical issues. I also hope my parents have a year of good health.

May 2025 be your bet year yet! Happy New Year!

It's Only Wednesday...What a Long week!

When I woke up this morning, I was surprised to find out it is only Wednesday. Now, do not get me wrong. I am always running out of time to get things completed, but the exhausted I felt this morning had me wondering how it was only Wednesday.

On Monday, I had a VERY long day of going to appointments. The headache I developed on Monday night reminded me why I try to avoid long days. Yesterday, I spent seven hours getting caught up with YouTube comments. I have been too busy and too sick to keep up with the numerous messages. I really need to get someone to manage my social media accounts...but that will probably not happen. I cannot pay anyone to help me. I am not monetized and will likely never be monetized. Plus, the person needs to be someone I deeply trust because he/she will have access to all my accounts. And also, the person cannot be very sensitive to negativity because the comments I receive can be very mean and down right awful.

The exhaustion from spending that much time replying to comments really wore me out. I slept long and hard last night.

Today, I had another appointment. The trip took longer than expected, but nonetheless, I was back home fairly quickly. Then it was off to edit a YouTube video. 

I like to stay ahead of my YouTube videos. I try to have a week or more worth of videos ready to go, but of late, I have been getting very behind due to the demands of social media. So, tomorrow's video is actually a video I filmed today and edited today. That is a rarity.

Now, I need to finish some social media correspondence and start thinking about a video I should film tomorrow. With having two YouTube channels, I have to produce two videos a week. I am not sure how much longer I am going to be able to do that. I am running out of energy to keep up with everything.

IT WORKS!!! The Miracle Oven

A week and a half ago, I tried to take a shower. However, the water was cold. I reset the water heater several times, but the water remained frigid. I took a fast shower and got out of the freezing cold water as soon as possible.

I then went to use the stove and oven. The stove worked fine, but when I turned on the oven, the burner on the stove went down to almost nothing. I wondered if we were out of gas. This sometimes happens when the gas tank runs low. I pushed aside the though and threw in a few sweet potatoes into the oven. I went to bed and forgot about the event.

A few days later, I tried to use the stove. The burner flames were very low. When I attempted to turn on the oven, the stove burners went out and the oven refused to ignite. I groaned. We must be out of gas. I asked my family member when we last received a shipment of gas. I was told we received gas earlier this year. My family member then inspected the gas gauge outside. We still had 55% left in our tank. Not knowing what else to do, the gas company was then summoned.

Praise be to God, the gas company was passing through our area. About 30 minutes after calling them, a work crew was at my home. They inspected everything. They could not find anything wrong. A worker came inside the house and saw the issues we were having with the stove and oven. There was definitely an issue with gas not coming into the house.

The work crew dug up our gas line and replaced it. Over three hours later, our stove worked! And as an added bonus, the water heater was now working too! Hallelujah.

A few days passed, and then I tried to use the oven. I turned the knob, but nothing happened. I turned it off and tried again. There was no clicking sound. My heart sank. I fervently prayed and tried a few more times, but nothing happened. I immediately thought the igniter must have suffered damaged when the oven did not receive enough gas earlier in the week. I did not want to call a service crew to replace the igniter. The gas line cost $1,000 to replace and getting a new igniter would be another $500. I decided I could use a slow cooker, air fryer and stove top for our cooking needs. And indeed, using this combination did satisfy all our needs.

This week, I was apprehensive about the oven not working. Thanksgiving is in a few days. I was slightly panicked because we really needed to use the oven.

Today, I had an appointment and then had to hurry back home to meet my respiratory therapist for her monthly visit. When I was rushing into the house, I meant to turn on a stove burner to heat up some water. In my haste, I turned the wrong knob; I grabbed the knob for the stove. I raced to go to the bathroom. When I went back to the oven, I screamed! The oven was working!!! I could not believe my eyes. I opened the oven and sure enough, it was heating up! Not to waste our oven's new found life, I threw a few butternut squash into the oven.

I started praising God and dancing around the kitchen! I was thrilled the oven was working again! I gleefully started singing, "The oven is working! The oven is working! Praise be to God!"

Happy Thanksgiving!

P.S. I am sorry this blog post is late. I meant to post it last week, but Blogger abruptly stopped, and I was unable to get this posted to my blog. Sorry for the delay. I hope you and yours had a fabulous Thanksgiving!

The Last Message

For nearly three years, I have been corresponding with a YouTube viewer. His mom found me on YouTube and told her son how good my videos were. The son watched my videos and agreed. He then reached out to me through my Facebook business page and asked me some questions and shared some of his story with me.

The man had a congenital medical condition which is a neuromuscular disease. I understood a lot about what he was going through because I have many similar symptoms. He also had a trach and used a ventilator.

During our last conversation, he had a number of concerns about care he received in the hospital. I gave him some tips and advice. I also assured him everything would be ok. His last message was as follows: “Thank you so much. Your help really means alot to me.  Like so much that I feel like crying happy relieving tears lol”

And with that, our conversation broke off as it usually did, until he had another question or concern.

On Saturday, I received the following message from his mom:
“I want to thank you for helping my son with his health question recently. His name is (name deleted for privacy). He is my son. He lost his battle with his life long illness yesterday. You also helped me too. Thank you so much.”

I cannot tell you the devastation I felt learning of his passing. Tears quickly sprang to my eyes and cascaded down my cheeks. I was completely grief stricken and stunned. I was also touched that his mom contacted me to let me know her son had passed away. I immensely appreciate that.

My deepest condolences to his family and friends. What an incredible person he was—kind, caring and a great friend. May his memory be a blessing.

Where Have I Been? Two Months Since I Last Updated

It has been two months since I have posted on my blog. I have thought of many things to say, but my energy to type them has escaped me. I have been having very poor health. Blood clots have plagued my life. I cannot tell you the exhaustion and general sickness they have caused me. To get through each day takes a tremendous amount of resolve and determination.

And then there is YouTube. In celebration of Mitochondrial Disease Awareness Week, I posted a video entitled: A Day in My Life with Mitochondrial Disease. That video did very well! The analytics on YouTube began recommending my video to more and more people. With more traffic to my channel, people began watching other videos. Soon, a video from three years ago, started gaining traction. And to my delight, my channel saw incredible growth.

The comments I have received have been overwhelming, both in number and in sincerity. People have shared their stories with me. It can be very energy draining reading about people's struggles. My heart often breaks and tears sometimes run down my cheeks, but I try my best to give people hope and encouragement.

As the weeks have passed, I have pondered if I should hire someone to monitor my social media accounts. At times, it can be too much for me. However, I am very leery of doing this because I am cautious about how I reply to people. All my responses are done from a place of love, and that may be difficult for someone monitoring my account to do.

With that, I hope everyone is doing well. I hope this season of your life is filled with lots of love and joy.

P.S. The photo is courtesy of my one my YouTube subscribers. She thought the koala would help me as I deal with my health challenges. I thought I would share the photo. I hope if brightens your day.