Rest Easy Tasha

As I lie in my bed fighting through a second straight day of significant GI pain and sickness due to my disgruntled pancreas, I log in to Facebook. I check my news feed; there at the top of my page is a notice my dear friend Tasha has passed away. I am stunned and shocked. How can this be?

Tasha just celebrated her 27th birthday on May 29. She had Mitochondrial Disease which significantly affected her gastrointestinal tract and ability to breathe. She was one of my dear friends and comrades who also had a tracheostomy and used a ventilator to breathe.

Her death was sudden. She was having GI issues. She went to the hospital to have everything sorted out. They did a surgery to place a feeding tube into her intestines. The surgery caused her intestines to become paralyzed. Measures were taken to alleviate the pain and pressure in her GI tract. Unfortunately due to all the complications, she passed away.

I try not to be too overwhelmed with emotion, but it is so hard. Another one of my dear friends passed away a year ago. Her story was nearly the same. She had Mito. She went to the hospital. GI complications arose. She passed away. She was 23 years old.

When the rest of the world is in panic mode over a virus, Mitochondrial Disease rages on. People continue to be diagnosed. Lives continue to end. A cure is no where in sight. There is no vaccine for Mitochondrial Disease. There is no herd immunity to the illness. The best we can do is share and learn from one another. The best we can do is remember those who fought so bravely.

Rest easy Tasha. You will be deeply missed. May your family and friends find comfort in the legacy you left behind.

In loving memory of Tasha Lynch.

She's home safely with all her belongings!

My mom has been stir crazy since everything has been shut down due to the virus. Her daily outings to restaurants have ceased. My numerous doctors appointments and long distance trips to medical facilities have all been canceled. Her extended vacation to Europe (including a cruise through the Baltic) has been rescheduled to next year. She finally decided to go one place which was open: Las Vegas.

I was nervous about her trip. I could care less about a microscopic bug. However, I was concerned about her safety and having a good time even though she was going to be traveling alone. I was also nervous because my mom has a tendency to misplace and lose things. Traveling alone means no one will be looking out for her--to pick up things she drops and see an item she may have left behind. I did the one thing I could to help my mom: I prayed continually that she would be safe and not lose any of her belongings.

At the airport, she met two friends who attend church with her. They all were on the same flight. When she arrived in Laughlin, she had a room which ended in her favorite number. The next day, she faced a serious dilemma: she needed to go back to the airport to pick up her rental car. There were no car rental shuttles. Uber, Lyft and taxis were running very few cars, making it extremely hard to hire a car to get a ride to the airport. Next, my mom thought of an ingenious plan: she went to the parking garage and asked people going to their cars if she could get a ride to the airport. She found one woman who agreed. When they arrived at the airport, my mom insisted on paying for the ride. The woman refused.

After getting her car rental, my mom was off to Las Vegas. Once again in Las Vegas, she had a room which ended in her favorite number. She had a beautiful room overlooking the Las Vegas strip.

Whilst there, my mom linked up with a man who does YouTube videos about Las Vegas. My mom was interviewed as a guest on this man's show! (I was stunned and flabbergasted my mom mentioned my YouTube channel during the interview. The host picked up on it and said the name of my channel several times!)

When my mom returned back to Laughlin, she again met the two woman from church. They had a lovely time chatting and getting caught up on life. (They have not seen each other in many months due to the church being closed.)

When my mom was on her way to the airport, she stopped to get breakfast at a restaurant. She was in a hurry. When she arrived at the airport, she could not find her credit card, debit card or photo ID. She was frantic. She looked everywhere, but it seemed the cards must have fallen out of her purse.

Thankfully, she was able to get through airport security without a government issued ID. It was a lengthy process, but the TSA was very polite and kind. There was supposed to be no service on the plane, but to her surprise, the flight crew gave each passenger a generous supply of snacks in a plastic bag.

When my mom arrived home, she began searching her luggage for the lost items. Then she thoroughly looked through her purse. To her relief, her debit card, credit card and photo ID were in a deep outside pocket of her purse. She never uses that pocket, but when she was at the restaurant, she must have quickly shoved the items in her purse and placed them in the pocket and not in the inside zipper compartment.

As my mom resumes her daily life, I sigh with relief. She had a grand adventure with many pleasant and unexpected surprises. I thank God over and over again for hearing all my prayers. "She made it! She's home safely! She came home with all her belongings! Hallelujah!"

Invited to be first

Even since I can remember, my dad always had a policy whenever we were at functions in which there was a meal: we were always to eat last. If it was a table service, my dad tried to always sit at the table which was served last. If it was a buffet, my dad would wait until everyone else ate before he would enter the line. As a small child, this frustrated me. "But dad," I would whine, "if we wait all the food will be gone." And many times at buffets, when we would finally eat, there would be only remnants of food left in the dishes. Oftentimes, many of the popular dishes would be completely empty. I would lament my hungry stomach and longingly look at the heaps of food others had on their plate. Immediately behind us in line would be the folks coming back for second helpings.

I never enjoyed this exercise in humility. If I had it my way, I would be like the rest of the people in the dining hall, I would be fighting to be first. I would be fighting to have as much food as I wanted which would fit on my plate. But this was not the way in our household.

As I grew up, I realized restraining oneself was a good habit. I found it was often best to go last as then you had time to carefully explore the options set before you. It taught me to be grateful for the food which was left on the buffet. I learned to appreciate that I am the one with the few choices and not someone else. If I am still hungry, I can always get food from another source.

A few years ago, I was invited to be a guest speaker at an event. I was thrilled to be a guest of the function, much less to be the presenter! When I attended the gathering, the venue was filled with people. Every attendee brought a dish for the potluck. The buffet was piled high was lots and LOTS of glorious looking dishes. I marveled at the wide range of delicacies. I also knew with my numerous food allergies and food restrictions, I would not be able to eat one bite of food. This is always sad, but it is for my own safety. Even if a food looks "safe", there may be hidden ingredients which could cause me to have a severe reaction. Instead, I always eat before going any where and try to distract myself while others eat.

This evening, when it was time to eat, the host of the event announced I should go first. Oh, how my heart swelled with gratitude for this honor. Oh, how I always wanted this wonderful distinction to have gleefully be the first to try any of the large assortment of food. Fighting back tears of appreciation, I thanked the host for this honor, but I declined the invitation to eat. Instead, I sat quietly as I watched the first person to pass through the buffet and imaged what it must feel like to have all these food options. As I waited for everyone to eat, I silently sipped my water and thanked God for this invitation to be first.

"But when you are invited, go and recline at the last place, so that when the one who has invited you comes, he may say to you, 'Friend, move up higher'; then you will have honor in the sight of all who are at the table with you" (Luke 14:10).

EDS: Snap, crackle, pop!

For the last several days, I have been gingerly moving around. When filming my last video, I sat in a position which must have put too much stress on my left hip. This caused my hip to slide out of joint and overstretched my muscles and ligaments. Now, my body is trying to recover, but it is hard to do since moving my leg is essential. (If I do not move my legs or hips, I will never be able to leave my bed to use the throne!)

One of the many conditions I have is called Ehlers Danlos Syndrome (EDS). In a nutshell, this condition occurs when you have faulty connective tissue. This can cause your joints to become unstable and can cause your joints to slide or even pop out of place.

Since I do not move a lot, I have been very blessed EDS has not bothered me too much lately. I have to be careful moving my shoulders, or they will sub-locate. I have to be careful bending my knees or they pop out of place. I have to be careful typing or my wrist joints slide around and cause horrible pain and swelling. But besides all this, my joints have not been too much of a burden. (I have not had any dislocated fingers and toes. My hip has not completely popped out of place. My ankles have not rolled. My jaw has not painfully popped when opening it.)

But now, it seems, my new adventure of making videos will have to have an additional layer of caution. I will have to carefully position myself so I do not put any additional stress on any of my joints.

People often wonder why I do things in strange ways. When your body likes to slide around, you have to find different ways to move...and sometimes those new ways often mean you look a little odd as you try to keep all your joints aligned and not get injured.

60 days and counting...

As I sit in my bed, I count the number of days it has been since I last left the house. To my surprise, it has been exactly 60 days. Two months ago was the last time I exited the driveway and explored the world around me. I wonder what has changed?

The extended time spent at home has been simply because the two places I normally go--religious services and medical appointments--have all gone virtual. Although I do appreciate the ease of turning on a wifi enabled device and instantly have a doctor's appointment or watch a pastor preach, I miss real human interaction.

I was thrilled to learn this weekend the church I attend is planning on re-opening. I eagerly thought about who I wanted to see. I then was heart-broken when I realized many people would not be attending because they are still staying at home.

My mom has been freely coming and going from our house without reservations about being exposed to anything. She takes precautions, but she feels she is not at risk to live out her days sealed up at home. If she does get sick, she will then isolate herself from me (as she always does whenever she gets sick). But her behavior towards me amuses me.

When I told her church is resuming services this weekend, my mom told me I was not going. I protested I have not been anywhere. I could sense my mom's uneasiness about me being exposed to a lot of other people. Consciously or sub-consciously, she has since told me multiple times how many tourists are in our area. "The places are packed with people!" she exclaims. I can take the hint. Lots of people means I might get sick. Unlike the rest of the world which seems to be only concerned about one virus, my mom and I know the flu and other bacterial and viral infections can be just as or more deadly. Someone who does not wash his hands after using the bathroom and gets E. coli near my airways can cause a fatal infection in my lungs.

I could pray that God would do something to re-open the world to me, but I know the danger of this prayer. One way God can answer it is by allowing me to have some health complication requiring immediate medical intervention. So, instead of praying for something to change, I will just continue on with my new normal life, watching the world from my window. Some day I will leave the house, but that day is not today.

Remember the families

As coverage of Mr. Floyd's funeral floods our airways, I would like us to take a moment and remember the families of all those affected by this incident. There is Mr. Floyd's family, but there are also the families of the four police officers involved in the incident.

My heart nearly breaks for the families of the police officers. Their lives have gone from one of peace and stability into mass chaos. These families are constantly taunted with death threats. They have instantly lost one of their main sources of income. How will they pay their bills in the weeks, months and years to come? They live in fear every day; they have been characterized as wicked, horrible people. They have done nothing wrong, and yet our society is treating them as if it was their knees on the neck of Mr. Floyd.

I cannot imagine the shock and horror of learning that your husband/father/brother/son has been accused of a gross act of recklessness which resulted in the death of someone. In a heartbeat, their lives have crumbled to pieces. The pain and anguish of this event will continue probably for the rest of their lives. Moreover, the police officers and their families will have to endure what will be a very lengthy trial. Whatever the verdicts in the cases, their lives will be haunted by this incident until their last breath.

Please remember these families in your thoughts and prayers. I cannot fathom the anguish, heartache and fear these people must be going through. May God have mercy, kindness and compassion on them.

After the frustration comes the laughter

Recently, I started a YouTube channel. The very first thing I wanted before shooting my first video was a microphone. My voice is not very strong and fails fast. Using the built-in microphone on my computer requires me to almost shout in order for my computer to pick up my voice. Moreover, the sound quality is poor. Knowing all this, I searched and searched my parents' electronics collection. Unfortunately, I struck out. They did not have an external microphone. So it was off to searching online for one.

I found a microphone which had decent reviews and was not too expense. I purchased it and impatiently waited for it to be sent and arrive in the mail. It finally arrived this week! I was so excited! I quickly opened the package and plugged it into my computer. I opened my movie recording application and recorded a short video. The computer detected the device. It looked as though when it was recording, the microphone was picking up my voice nice and strong. When I went to play back the video, there was no audio. I was stumped. I could tell the video had audio, but no audio was coming out of my speakers.

I recorded more and more practice videos. I kept having the same issue. The recording appeared to have audio, but when I played back the video, there was no sound.

I was absolutely frustrated. I searched online, but I could not find a solution. Then, I happen to flip through the small piece of paper which came with my microphone and had a scant amount of instructions on it. I saw in the directions it stated when done recording, unplug the microphone to playback the video. Immediately, I felt like an idiot! Duh! The external microphone is plugged into the earphone jack. If it is plugged in when playing anything with audio, my computer will send the audio to the earphone jack, instead of the built-in speakers. As soon as I unplugged the microphone and played back the video, behold, there was audio!!!

I was laughing uncontrollably after this all happened. I was so grateful and thankful the microphone worked. I was also laughing because I am sure I am not the first person to make this mistake since there were instructions telling me to unplug the microphone in order to hear the video playback. After feeling so much sadness and sorrow over the recent events in our nation, I was praising God for this moment of laughter.

If only I could be an astronaut. Instead I have POTS

I breathlessly watch as a rocket blasts off from earth. Oh how absolutely exciting to watch two astronauts ascend the confines of this earth and propel into outer space. My heart leaps with joy at the thought to watch as this earth would get smaller and smaller...to see the earth from space!

Since I have been a small child, I have been fascinated by space. A lifelong dream of mine was to go to space camp. Although that still remains a dream, I have had the opportunity to visit the space centers in Florida and Texas. The thrill and excitement to be so close to the people who work to send astronauts into space was amazing!

In 2009, my health was rapidly declining. I was diagnosed with a condition called Postural Orthostatic Tachycardia Syndrome (POTS). POTS in a nutshell is when a person's heart races very fast (usually 120 beats per minute or more) upon standing. As I was researching this ailment, I found out astronauts develop this very same medical condition from going into space. The lack of gravity makes the body "forget" what it is like to stand up against gravity. While in space, astronauts' bodies lose muscle tone and other mechanics needed to help a person stand up without developing a fast heart rate and possibly passing out. A lot of research on POTS has come from the space program.

So although I will never blast off into space, I smile when I think about POTS. If only I could be free from gravity, I could be free from POTS. As much as I do not like POTS, I find it comforting that God has given me an affliction which allows me to feel connected to the space program. When bad days threaten to overwhelm me, I remind myself, I have the astronaut condition...I just have never left earth!