7 years of blogging. Thank you Milly for the inspiration!

In the summer of 2016, I learned that a very dear friend of mine had passed away. She had Mitochondrial Disease and died from respiratory failure. She never got a tracheostomy tube. Instead, she fought to her death using a BiPAP machine, which in the end was not strong enough to sustain her. She needed a tracheostomy tube.

I do not know many of the last details of my sweet friend’s death. I do not know if my friend, Milly, was advised she needed a tracheostomy tube, or if her medical team thought a BiPAP machine was all she needed.

In short, I was deeply grieved to lose such a dear friend.

On August 1, 2016, I decided I wanted to start a chronicle of my adventures in honor of Milly. Milly had a YouTube channel. I wanted to continue her legacy. The account was not supposed to be of any importance—just my daily life with Mitochondrial Disease. I was ambivalent if I wanted to be like my friend, Milly, and have a YouTube channel, or if I should just do a blog. In the end, I decided to do a blog. I did not have a camera, which was the ultimate tipping point of deciding against doing YouTube videos.

A few weeks later, my breathing did a dramatic nosedive. I was thrust into the world of medicine, begging doctors for help. I could not breathe. My blog soon became a source of solace when my world seemed to be crashing down. But together, we pulled through many harrowing situations.

Eventually, in April 2020, I did launch a YouTube channel. I had been given an old computer which had a built-in camera. The focus of my YouTube channel was educating people about
tracheostomy tubes and ventilators. I always think about my friend, Milly. If she would have found my YouTube channel, would a video of mine have helped saved her life? I will never know.

Instead, I try to honor my dear friend in all my videos and blog posts. May her memory be a blessing.

(For anyone interested, I just joined Instagram. My username is lifewithavent if you wish to follow me.)

STOP! That's electricity! It can KILL you!

 Today I had big plans of finishing a YouTube project. I have spent many weeks writing, filming, editing and re-recording audio and video. The end was in sight. Today, I was going to be finally done!

Well, that was my plan. This is how my day turned out.

This morning, the lawn service came to clip our grass. There was an electrical cord on the backyard patio. The nearest grass was about 30 feet (10 meters) away. I thought there was no reason to move the cord. It was far away from our yard.

After the lawn was cut, a man came with a weed whacker. He trimmed the edge of the yard. He then came onto the back patio. He was using the weed whacker to trim some small weeds which were growing in between the patio cracks. He then walked up to the electrical cord and weed whacked the electrical cord.

I ran out of the house and screamed at the top of my lungs to the man, "STOP! That's electricity! It can KILL YOU!!!" (I had to scream as loud as I could because there was also a man using a leaf blower right near the weed whacker guy. In order for me to be heard, I had to make more noise than both the weed whacker and the leaf blower.)

Praise be to God, both men heard me and turned off their noisy machines. The man with the weed whacker looked at me in confusion as if he could not comprehend that using a weed whacker on an electrical cord will damage the electrical cord and cause it to short out. Both men walked away and left the property.

The whole incident left me very sick. The panic of seeing the man weed whacking the power cord in addition to frantically running outside and using all my muscle strength to scream as hard as I could left me in a very poor health state.

My grand plans of finishing my YouTube project were shattered.

Since I was shaking from fatigue, I hooked up my IV nutrition called TPN. The TPN ran for a few milliliters and then started beeping. It said there was air in the line. I tried clearing the line, but the pump kept beeping. I discarded the bag of TPN. I then set up another bag of TPN. This time, the pump worked for about 20 minutes before it started beeping. It stated the pump door was open. I checked. The door was closed, but I opened the pump and reset it nonetheless. I turned back on the pump and again it stated the pump door was open. I did this routine a few times with no avail. I finally decided the pump was on the fritz.

Thankfully, I have a second TPN pump. I undid my TPN tubing from the pump and hooked it into the second pump. I turned on the second pump, and for the moment, it seems to be working.

When I thought all hope was lost for the day, I looked outside and saw a mommy and daddy with their tiny baby birds. I was so excited! I have been waiting and waiting for them to have kids, and today, God allowed me to see this beautiful miracle.

The stress of the day instantly melted away as I was overwhelmed with delight to see these beautiful baby birds!

 Maybe all hope of completing my YouTube project may not be lost. There are still hours left for today. Perhaps, God may be gracious to me and allow for everything to quickly fall into place.

Getting Blood Drawn…and abruptly feeling ill

Yesterday, I traveled to the city to have a medical appointment. While I was there, I had my blood work drawn for my IV nutrition called TPN. Usually, I have two vials of blood taken. But yesterday, the nutritionist wanted additional lab work done. I believe it was around 10 vials of blood. 

It was a very hot day yesterday. I made sure I drank lots of water to stay hydrated due to the heat and also from losing blood from the lab draw. I thought I was doing ok.

Last night, I went online to return a few messages. As I was typing to one person, I abruptly felt as though I was going to pass out and throw up. I knew this was my body’s signal that I needed to lie completely flat. If I did not adhere to my body’s warning, I would be forced to lie flat when I passed out. I heeded my body’s urgent pleas. I immediately laid down and within seconds it was lights out.

I slept for 8 hours.

When I woke up this morning, my body was dragging from fatigue. I am trying to be productive, but leaving my bed seems to be a task which is too labor intensive. It seems today is a day to spend in bed. I am grateful I only have to have extensive blood work done about once every 6 months. In six months it will be the middle of winter, and I will not have to worry about enduring the heat in addition to haing blood work done.

An Epic Laundry Saga!

In May, wash was placed into the washing machine. Everything appeared to be in working order. An hour later, the machine only had completed three minutes of the wash cycle and seemed to be stuck. After much finagling, the washer officially bit the dust.

My parents ordered a new washing machine. Two weeks later, it arrived.

For two days, my mom was frantically getting caught up on wash. When she was done, I had some wash which needed to be done. After the wash cycle, the laundry was placed into the dryer. Three minutes later, the dryer was chiming my clothes were done. The clothes inside the dryer were still wet. Although different cycles were selected, the dryer would not work.

My parents ordered a new dryer. Two weeks later, it arrived.

On day 7 of having the dryer, my mom did some wash. She went into another room. When I came into the kitchen to get breakfast, I heard what sounded like an awful screeching racket coming from the laundry room. I immediately arrived in the laundry room. The dryer was making an awful racket. I turned the machine off. The noise stopped. I turned it back on, the clamor returned.

It seems there was something wrong with the dryer. The store where we purchased the machine was contacted. A new dryer was ordered.

Two more weeks passed.

Yesterday was the big day the dryer was supposed to arrive. Before it was delivered, we received a phone call. The delivery man said the dryer had a dent in it. Did we still want it? My dad asked for a photo to be texted to his cell phone. When the photos arrived, I burst into hysterical laughter. The “dent” was catastrophic damage to the back of the dryer. It looked as though the dryer fell off the delivery truck. We declined the dryer.

And now we wait for another dryer…maybe some day, some day soon, we will be able to wash and dry clothes.

Yippee! I Won! Happy Independence Day!

Today is garbage day. There has been much discussion today on the topic of our trash being picked up. People have been stating their views why the garbage will not be picked up. “It is a holiday.” It is Independence Day.” “No one is working today.”

I, however, was one of the few who believed the trash would be collected. We put out our trash can just in case the garbage man came today.

At 4:30, I saw the garbage truck zip through our neighbor. I shouted, “Yippee! I won!” My mom did not know what I was talking about. I explained I saw the garbage truck. It was coming to pick up the trash.

A few minutes later, our garbage was collected. My dad was shocked. “They picked up our trash!? I didn’t think they worked on holidays.”

And with that, I won the game.

I am sorry the trash man has to work today, but I am grateful for his service. He helps keep our city clean.

Happy Birthday America!

When I don’t conserve my energy, I have a MAJOR health crash

Last night, I had the opportunity to attend a get-together right down the street from my home. Normally, I avoid outings, as they really tire me out. But, I assured myself I could do this.

I did more than what I probably should have. I pushed aside the fatigue which was quickly overwhelming me. I pretended I was “normal”. I feigned being well.

When I got home, my body felt as though it was being electrocuted. I tried to go to sleep, but the pulsating electricity continued to cascade down my body. In the wee morning hours, my body drifted into a restless slumber.

Today, it seems every muscle in my body hurts. It hurts to breathe. Light aggravates my headache. It feels as though my limbs are weighted down with heavy bricks.

I really enjoyed seeing people, some of whom I have not seen in over four years. It was a great night, but I over-did it. It is hard to adhere to strict limits my medical condition has for me. I often forget my body has limited energy. It takes very little to tire me out and make my health crash.

And now I wait...I wait for my energy levels to return back to normal. Thankfully, I have no plans to leave my house for the next week; so my body can take its time recovering from this health crash.

The never-ending game of “catch up”

For man my years, I have felt as though I am constantly in “catch up” mode. There are a mountain of things I want to get done, but they remain undone. I have been trying to make lists and force myself to get things done. This works well until my body says it has had enough.

It is odd to watch people be productive day after day. I wonder how they have so much energy. I try to do things two days in a row, but by day two, my body is throwing an unrelenting fatigue party. It does not matter how hard I push myself, my body refuses to function.

After being sick for so many years, one would think I would be used to having lots to do, but no energy to do it.

Perhaps tomorrow will be a better day…and maybe tomorrow I will be able to get a few more things done and crossed off my never-ending list.