Thursday, August 27, 2020

Blessings abound when you keep your eyes open

After going to an appointment to have an ultrasound done of my heart, it was time for my grand adventure to the store. I rarely leave the house, but one place which is always a treat to stop at is the grocery store. I love to look at the endless aisles of food and see all the delicious food. It is always such a miracle we have so much food in our stores and have so many choices we can make.

As I approach the store, I see there are no electric scooters in the outside bay. But, there is a scooter a few feet away in the parking lot. I praise God for this scooter. When I turn it on, I again praise God it has a full battery. As I zip into the store, there are organic apples on sale for 50% off. I buy two bags. As I pick up the rest of the items on my list, one product I need is grated Parmesan cheese. My dad was going to have spaghetti for supper, and there was no Parmesan cheese in the fridge. I have no idea where this would be located. I zoom down the pasta aisle. But it is not there. I head to the refrigerated cheese, but it is not there. I see an employee stocking the shelves. I think, "Should I ask him where the cheese is?" As I ask this question and head toward the man, I hear a response in my head, "Yes, ask him."

I pull up next to the man. The employee is holding in his hands a case of grated Parmesan cheese! I nearly burst out laughing. I then ask if I could have one of the containers of cheese. The man breaks open the case and gives me one container. I am shocked it is the EXACT kind I wanted! I then again praise God for this incredible blessing. For the rest of my time in the store, I am silently laughing and praising God.

Before leaving the store, I need to use the bathroom. I am grateful the family bathroom is vacant. This bathroom is much closer than using the ladies' restroom. I do my thing. I do not like using hand dryers. So, I grab some toilet paper and only partially wipe off my hands because the toilet paper falls apart as soon as it gets wet. I use the toilet paper to open the bathroom door. I get a few feet from the door when an employee cleaning the adjacent men's room sees me. He grabs a paper towel roll and offers me some paper toweling. I am grateful for the toweling and finish drying off my hands.

As my dad drives us back home, my heart is bursting full of happiness, joy and gratitude to God. I wonder if everyone experiences these abundant blessings and we fail to recognize them...or if God was being extra kind to me knowing I rarely leave the house. Whatever the reason, what a wonderful time I had at the store. Praise God!

Tuesday, August 25, 2020

The Test is not the Test

Recently, I have had friends encounter discouraging health information. My one friend found out her swollen neck is stage four cancer. Another friend desperately wanted to donate her kidney to her sister but has been informed she needs to resolve some of her own health issues before being able to proceed with the donation.

As I read comments and reactions from my friends' family and friends, I witness anger and disbelief that God could be answering prayer in such a negative way.

One thing I have learned in life is the test is not the test.

In school, when you had an exam in math, the test may have been fair. You may have gotten a grade which reflected your effort and understanding of the concepts. Then there are tests which are unfair, with questions beyond the scope of the class or which do not have any correct answers. The test is rigged against the student. It does not matter how hard you studied, you may end up with a poor grade. The mark does not reflect your knowledge or understanding of the subject.

And this is where the real test comes in. It does not matter if the exam was fair. It does not matter if you got a perfect score or a 50% on the exam. What matters is how you react. Do you boast about your score and put down other students? Or do you take your high achievement and use your mastery of the material to tutor others who are struggling? Do you decide the subject matter is beyond your comprehension and give up? Or do you double down and become determined to ace the next exam? How you react to the situation is the real test. And this applies to every day life.

Many events happen in our lives which are far beyond our control. We cannot control a virus or its outbreak. We do not decide who gets cancer. We are not responsible for other's behaviors such as drinking and driving which ultimately may kill a family member. Life is often unfair. The test is sometimes rigged against us. But that is not important.

What is important is how we respond. Do we put our best foot forward, loving God and loving our neighbor as our self? Are we able to forgive those who have harmed us? Can we see the good in all things or believe that all things work together for good?

Life is hard. We all face daily tests which can build us up or tear us down. Sometimes we may feel 100% confident about the subject matter while other times we show up totally unprepared. Never lose sight that the test is not the test. How you react to the outcome of the exam is the true test.

Friday, August 21, 2020

Ready, Set, Phone Rings!

This week, I have had a very busy schedule. Medical appointments on Tuesday, Wednesday and Friday meant finding time to film a YouTube video would be hard. However, I was prepared for the challenge. I worked ahead creating content and the script. I carefully planned when I could film the video and not be too tired from my appointments.

I select the day and prepare to shoot. I change into a fresh, wrinkle-free shirt. I comb and fix my hair so that it looks presentable. I set up my computer and adjust the lighting. I open up the video software. I plug in the microphone and attach it to my shirt. I test the audio and video. I begin to film. Then, the phone rings. I quickly, but carefully, unplug the microphone and race to the kitchen to answer the phone. It is a doctor's office reminding me of an appointment for the next day.

I go back to my filming studio. I again set everything back up. I plug in the microphone. I attempt to film and the phone rings again! Once more, I quickly unplug the microphone and flee to the kitchen. It is another doctor's office telling me I have a telemedicine appointment today. (I am shocked to hear this information. This is news to me!) I am informed the appointment will begin in at 2 p.m. I hang up the phone and look at the clock. It is 1:40! I race back to my studio. I have to film at least one section of the video. I distractedly shoot the intro to the film. I then shut down my computer and flee to my bed to wait for the appointment.

I carefully lie down. I do not want to mess up my hair or get my clothes full of wrinkles. I am exhausted and gasping for breath. I click open my iPad and begin reading the Bible. I soon switch to listening to Scripture. As many minutes pass, I am nearly asleep when the phone rings again. It is the nurse from the doctor's office. I answer her questions. She then tells me she will email me a link to the telemedicine appointment. I go back to reading the Bible as I wait for the email.

Finally, the email comes through. I log in to the website. I again wait. The doctor comes on the screen. The appointment is unproductive. I do not discuss with the doctor my recent health decline or my recent adventures to the hospital and emergency departments. I try not to speak. I need to save my voice to film my video. When the video conference ends, I go back to filming my video.

The video comes together quickly. I am thankful and grateful when the last section is finished. I take refuge in the kitchen, gulping down water. I am extremely thirsty and am losing my voice. A video which was supposed to be a quick shoot ended up taking the longest (so far) to film. I am happy with the way the final video looks. For as tired as I was filming it, I actually do not look very tired in the video. I carefully edit the clips together and save the final product.

Now, it's time to start working on next week's video...because again next week I have a very busy schedule. Hopefully the next time I film, the phone won't ring!

Wednesday, August 19, 2020

Please let it not be Dean!

As I sit in the kitchen thinking about my recent health adventures, my father starts telling me a fragmented story. Our neighbor bought an electric bike. A half hour later, my father begins a new story. A man committed suicide. Ten minutes later, my father connects the two stories. Our neighbor bought the bike at an estate sale. It was the man who committed suicide. My dad then relates to me that a man who works security quit his job as a security officer. He then committed suicide.

Immediately, my heart sinks and I pray, "Please, let it not be Dean!"

Dean works security for our community. He closes up the community center and patrols the streets. I often see Dean after Bible study. He usually is in the parking lot waiting for our group to leave the building. We frequently pass each other in the parking lot. Dean always is upbeat and is super friendly. I look forward to seeing the man.

I am desperate to find out the identity of the man who died. I think about Facebook. Maybe I can look up Dean's wife's Facebook page. I frantically try to think of her name. Suddenly, the woman's first and last name pop into my head. I place her name in the Facebook search and praise God her page pops up on the search results page. I click in to her homepage. And there, on her page, is a HUGE list of condolence messages. "Rest in peace Dean." "Sorry for your loss." "So sad..."

Tears burst forth from my eyes. How can this be? How could this man end his life? This man was very active in his church.

As I think about this last thought, deep sadness takes root. His faith was not strong enough.

I suddenly think back to my own life. How many times have my symptoms been so overwhelming I have wanted a fast escape? Have I wanted this misery to end? The one thing I always think upon is the Bible verse, "Do you not know that you are the temple of God and that the Spirit of God dwells in you? If any man destroys the temple of God, God will destroy him, for the temple of God is holy, and that is what you are" (1 Corinthians 3:16-17).

From the Bible, we know that God is very angry if someone intentionally destroys His temple. I cannot imagine the wrath God would have for someone who takes his own life. As much as I want to believe the words, "Dean is now resting easy," I do not want to think about the eternal condemnation a person must suffer for ending his own life. As hard as this life may be, this life is short. Eternity is beyond my comprehension and stretches into the great unknown.

As these thoughts swirl in my head, I click through a few posts on Facebook. And there on my friend's page are some of the sweetest words someone has written about me. My dear friend and former roommate, Heather, from undergraduate shared one of my YouTube videos and wrote very kind words about me. I thank God at this moment for this beautiful friendship.

I wipe the tears from my face and prepare for a long night ahead of me. My pancreas is acting up and causing significant pain. There is so much to think about and so much to pray about. As much as I despise these pancreatitis attacks, I am thankful I still alive.


Friday, August 14, 2020

Thanks for the support!

These last few weeks have been extremely chaotic. I have been trying to maintain my normal life, but it has been so hard. I have fought to keep going through my daily life as if nothing out of the ordinary was happening. When the days and nights were long as I endured the emergency department and hospital, I kept telling myself this too shall pass.

When I came home and was feeling a little bit better to tell of my medical adventures, I was overwhelmed with the outpouring of love and support. For so many days, it felt as though I was fighting medical battle after medical battle by myself. But then people rose up to comfort me.

I cannot tell you how much it means to me to read words of encouragement and words of inspiration. It is such a blessing to have so many amazing friends. I am also extremely grateful to have one very special friend even go out of her way to make sure I had food I could eat while hospitalized. (Thanks Vicki! Words will never be able to express my gratitude to you!)

These next several weeks are filled with too many doctors' appointments, tests and procedures. I am already exhausted, and yet, there is so much more which lies before me. As each day comes and goes, I take courage that there is an army of people around me cheering me on and praying for me. Thank you so much for all the love and support. I sincerely appreciate it.


Wednesday, August 12, 2020

Worn out by the length of my days

After spending three months isolated from the world, my life was abruptly changed when nagging chest pain started becoming worrisome. One visit to the doctor sent my world into chaotic tailspin. In 12 days, I had four trips to the emergency department, three doctors appointments, two ambulance rides and one hospitalization. I had EKGs, x-rays, ultrasound, an echocardiogram, a ventilation/perfusion scan, urine samples, endless blood draws and six IV lines. Both my arms are covered in bruises from broken blood vessels due to collapsed and ruptured veins. My life included cardiology, nuclear medicine, radiology, family medicine, emergency medicine, physical therapy, occupational therapy and many other medical folks poking, prodding and asking me too many questions.

I lie in a pain ridden heap on my bed, grateful and thankful to finally be left alone...but the memories of these last 12 days haunt me. I think back to the day when my severe chest pain exploded into an episode of crushing chest pain, not being able to breathe, having my heart race and become irregular, and feeling as if I was going to die from the overwhelming fight to stay alive. Despite all this, after going to the emergency department via ambulance, my symptoms were brushed aside. I found out when I went to another emergency department at another hospital, my symptoms were life-threatening. I had a large blood clot in my lungs which probably would have killed most other people, but I made it through.

Then there are the complications. The blood clot damaged my lungs and put a tremendous amount of stress on my heart, causing it to fail. I developed blood clots in my legs, which sent more blood clots to my lungs, and again strained my heart and lungs.

These 12 days seem surreal. Where did the peace and quiet go from my last three months? Why is this all happening so suddenly? Why must this all be happening at a time when getting medical care is extremely difficult? As images of people wearing face shields, multiple face masks and being gowned from head to toe in disposable medical gear float through my mind, the alien feeling I experience from the lack of facial expressions and people being afraid to stand near another human being seems to sum up my emotions. This is a strange and foreign world we are living in; nothing seems right and everything seems wrong. I am worn out by the length of my days. I want to say it is hopeless. Yet, I know despair will not serve God. Despondency will not bring love, joy and peace to the world. I gather up my courage and look toward the future. May whatever lies before me be a blessing to the world around me.

Thursday, August 6, 2020

YouTube makes me smile

As I sit in the emergency department (ED) enduring yet another ED visit, tears want to spring forth from my eyes. I tell myself I need to be strong. It is just the ED. It is just a room. It is just another round of tests, poking, prodding and being asked endless questions. But the grief and emotion of having my health slip so quickly overwhelms my soul.

I click open my iPad. There in my web browser is one of my YouTube videos. I play the video. On the screen, there is a girl so happy and so glad to be alive. I allow her joy to lift my spirits. It is odd how my own happiness recorded in a video a few weeks ago can bring a smile to my face in the midst of so much drama. I click through a few more of my videos and soon my heart is as light and joyous as the girl I see in front of me.

When filming my videos, I always tell myself I have to be upbeat. I NEED to be full of laughter. It is often hard to get the cheerfulness mode running, but when I see myself on my computer screen, I suddenly AM very happy! It is such a joy and blessing to record videos. It is a thrill to have subscribers and people view my work. It gives meaning to a life which often feels as though its worth plummeted long ago.

Whatever path lies before, I am so grateful and so thankful God lead me to creating a YouTube channel. To have videos of me happy available at the touch of my fingers gives me great comfort in a time of great need. Who knew the best medicine is seeing yourself on YouTube? May my YouTube videos bring joy and blessing to all who view them.

Tuesday, August 4, 2020

I knew some day this day would come

Ever since being diagnosed with Mitochondrial Disease, there has been one condition which I have been constantly warned about. I have been told as Mitochondrial Disease progresses and affects muscles, it will most likely affect the heart muscle. This will lead to heart failure.

I had significant chest pain and decreased heart function in the spring of 2017. My severe respiratory distress (from my weak respiratory muscles) was putting strain on my heart. Once I received a tracheostomy in May of 2017 and was started on invasive ventilation, my heart issues seemed to have resolved.

In June of this year, I again started experiencing significant chest pain. I kept brushing off the symptoms. I reassured myself there was nothing to be concerned about. But, everything progressively became worse. I noticed I was out of breath doing simple things. I found myself gasping and feeling as though I could not breathe doing the slightest amount of exertion. I would have attacks in which it felt as though my chest was being crushed and the pain radiated to my neck, jaw, arm, fingers and back.

I finally decided I needed to do something. Through a series of divine miracles, I found myself at a clinic with an appointment to see a doctor. I like this clinic because the doctors always are very thorough. I rarely go to this clinic because the wait time is often 4-6 weeks for an appointment. This time, though, I was fortunate. I was able to be seen by a doctor three days after I called to schedule an appointment.

I described my symptoms to the doctors. An EKG was ordered. My heart rate and blood pressure were high. The results showed my heart has right-sided impairment. The doctor explained my lungs are putting strain on the right side of my heart. This is causing the right side of my heart to work overtime. More testing needs to be done, but it appears the right side of my heart is failing.

I have always known heart failure was a possibility, but I never imagined the heart failure would come from my dysfunctional lung muscles. I believed my heart muscle would just become weak from Mitochondrial Disease. Who could have imagined my decreased lung function would cause my heart to fail?

So here I am, waiting for more testing. I am relieved to know my chest pain is real. I am grateful nitroglycerin was able to take away a tremendous amount of pain. (I had no idea how much pain I was having until the pain was greatly reduced.) What the future holds, still remains the same. I have Mitochondrial Disease...and this is just another bump in the road.