Staying humble. A Reminder of Why I do what I do

The last several months, I have been on a marathon. It has been one health complication after another, and it has been a struggle to produce YouTube videos. Any spare time I have, I am creating new YouTube content. As one year has come and gone for my YouTube channel, I have been fixated on one number, the number of subscribers. The number is edging toward 500. I am thrilled my channel is growing…and yet, I feel as though I have lost my vision for being on YouTube. My brain is getting wrapped up in numbers instead of people.

From time to time, people contact me on YouTube. It is often an urgent request. Someone is having a tracheostomy procedure and guidance or encouragement is desired. I do my best to do what I can and very soon the person moves on. I never hear from the person again.

Last week, a woman contacted me. From the start, she was a spitting image of myself in so many ways. I smiled reading her message. I laughed as she told me about her stubbornness. Yes, we are the same in many ways.

She told me she needs to get a tracheostomy soon. She has been fighting the decision for a while, but my YouTube channel gave her the encouragement to go ahead with the procedure. Reading her words brought tears to my eyes and made me stop to thank God.

I started creating YouTube videos to raise awareness about tracheostomy tubes and ventilators. I wanted to let the world know having a piece of plastic in your throat and having a machine push air in and out of your airways is no different than using a wheelchair for one’s mobility needs. It is just another medical device helping people live their best lives.

Suddenly, everything about my YouTube channel fades into the distance. The only thing which matters is helping this person as she prepares for her upcoming procedure and assisting her in any way I can.

As much as I do not like my health and wish I could do something more with my life, I pause and thank God for creating me at this time in history. YouTube allows me to connect with others and enables me to do what I love: helping others through their own trials. What a blessing that is.

So sick...Push on.

Tonight is the night I usually post a blog post. Since I do not like breaking my weekly routine, I am pushing through to write a blog post.

Last week, I had an extremely busy week. When I felt fatigued and run-down on Sunday, I did not think much of it. My body was trying to recover. At 8:30 p.m., I was in bed for the night. I was completely wiped out. I set up my TPN for the night. An hour later, I had a severe headache, shaking chills and felt very unwell. I tried to push aside the symptoms. I was so tired. I slept on and on during the night. In the morning, I had a fever of 101.2 degrees, despite taking Tylenol and ibuprofen. I pushed on.

I have a lot of appointments this week. I stopped running my TPN yesterday because it was making me sick. If I did not use my PICC line, I did not feel that bad. Push, push, push through my symptoms...that is what this girl does. I am not going to the hospital. No. I need to have my medical appointments first.

Today, I could feel my body give out. I was shaking from fatigue when I got out of bed. I was gasping for breath. I told myself, I just needed to make it another 26 hours. Then I could be sick.

Long story short, I did not make it. I reluctantly went to the ER. My labs are a mess. Low white blood cell count, low neutrophils, low red blood cells count, low platelets, high liver enzymes, VERY HIGH c-reactive protein, high NT pro-BNT...etc.

I have gotten fluids, IV antibiotics, had multiple x-rays, ultrasound of my PICC line arm and abdomen, EKG, MANY vials of blood and have received other medicines. I am being admitted. My medical team is trying to sort everything out. Having a low white blood cell count, low neutrophil count and fevers means I am at risk for developing a serious infection. They have done three sets of blood cultures to check if a blood infection from my PICC line may be causing all the issues. I no longer feel as though I am on death's doorstep after getting fluids and antibiotics, but I still feel lousy. If all goes well, I will post a more extensive update to my YouTube channels next week.

Ready. Set. CRASH!

I lie in my bed. My body aches. The muscles in my legs, thighs and arms feel as though they have been lifting heavy boxes all day. I sit up. My head hurts. I am overwhelmed with exhaustion. I lie back down. I wish for sleep to come, but I just woke up.

This week, I have a busy schedule. I have been trying to push myself to get everything I need to do done. Then, add in, medical appointments and travel to and from the medical centers. I am exhausted. I am dog tired. I still have two very busy days left (tomorrow and Thursday). I have a slight reprieve over the weekend and then next week I have four appointments in two days.

I struggle through the day. I am so tired. I just want to sleep. I spend the day in bed waiting for energy to return. It never does.

This lack of energy is what is called a Mitochondrial Disease crash. When people with Mito pushed themselves too much, their bodies stop working properly. Muscles throb with pain. Exhaustion makes moving a difficult chore. If the energy crisis is severe, organ systems malfunction—nausea, vomiting, diarrhea, kidney dysfunction, low blood pressure, etc. In extreme cases, organ systems fail.

I sit in bed waiting for my energy to return. I know the next few days will really tax my body, but I keep focusing on the future…on days when my schedule allows me to lie in bed all day and not move. Eventually this energy crisis will pass.

I need new stockings! An Unexpected surprise.

For many weeks, perhaps even many months, I have been checking online to find compression stockings. My compression stockings are wearing very thin. One set has a large hole in the heel. Several other pairs have areas which are paper thin. I found a person selling 5 pairs of stockings for $60. The stockings are not exactly the style I wear. I prefer to wear the stockings which are thick. The thick stockings are more durable and are less likely to snag than the popular sheer style compression stockings. The stockings listed for $60 appeared to be made from a thinner material.

If I am extremely fortunate, I can get a single pair of the stockings I like for $15 each. Most of the time I pay around $30-35 for each pair. This only happens after constantly checking and pouncing on any cheaply priced stockings. If I would pay full price, they would be around $150 per pair. So, paying $60 for five pairs was a very good deal!

But, I was hesitant to pay so much for stockings I was unsure how comfortable they would be. I have some thinner stockings. They have lost their elasticity long ago and have a tendency to fall down even though they are waist high and have a waist band. Moreover, the five pairs of stockings were black in color. I do not like black stockings. They look odd when I wear skirts, sandals or shorts. I prefer the stockings to be nude color. The nude colored stockings blend in better with my skin. I decide to not purchase the stockings and continue my frequent online searches for compression stockings.

A few weeks ago, I was putting on a pair of my compression stockings. To my horror, there was a HUGE whole at the top of my left leg. I could still wear the stockings, but it was uncomfortable. I frantically turned on my computer and starting searching for compression stockings online.

To my amazement, the five pair of stockings were still listed. Now, the price was $50. After doing a quick search, I could not find any other stockings in the correct size or compression. I decided I would risk $50 in hopes of getting five pairs of stockings to wear until someone listed online the stockings I usually wear. I bought the stockings and waited for their delivery.

Although the stockings were sent out rather promptly, the package sat for a long time at a post office half way around the country from me. As I waited, another pair of stocking developed a huge hole in them.

When the stockings finally arrived, I opened the box. To my shock, the stockings were almost identical to the stockings I wear. I could not believe it! Five pairs of high quality stockings for such a cheap price! I was doing a happy dance and praising God for this unexpected surprise!