Wednesday, April 18, 2018

Grateful for the company...

As much as my health often confines me to the house, there are situations every once in a great while in which I am forced to leave my house. Recently, my former pastor and his wife were visiting my area. Oh, how I have missed them! Thankfully, their tight scheduled allowed them to travel within a short distance from my house. I eagerly sought the opportunity to meet with them.

From the moment of our reunion, it was as if no time had elapsed since I had last seen them. They have left the church scene and are now missionaries traveling the USA and the world! It was incredible hearing about their global experiences. Their frightful encounters in China, in which God provided a hedge of protection and allowed them to safely flee the country, left me awestruck and praising God for their deliverance. As I sat listening to story after story, I was extremely grateful for the companionship and change from my usual daily life. For just a short time, it was wonderful to forget about all my health issues and just bask in the golden glow of friendship. What a tremendous blessing their visit was. Now back to bed and my regularly scheduled life...

Thursday, April 12, 2018

I can’t remember...but

When I am in the hospital, there are certain games I like to play, especially in teaching hospitals. In teaching hospitals, there are lots of doctors-in-training. There are first year residents (interns), residents and fellows. Sometimes, there will even be some medical students floating around. Usually the medical students and interns are too nervous to participate in my games. Fellows are usually too educated and know far more medicine than I do. So, the games I often play are with the residents.

What exactly are my games? Well, they usually involve testing the residents’ medical knowledge. I ask them to explain procedures (and ask probing questions as to what they mean if they use a medical term), or I ask them to explain how a drug works (including the various organ systems and chemical pathways used). Although these are just games, I also use them to assess the doctor’s knowledge. If the resident does not pass my test, I will insist they do not do any procedures on me.

Sometimes, though, funny incidences occur. During one hospitalization, I was extremely tired. I had arrived at 3 p.m. the day before for a medical appointment. I had pneumonia which had not cleared after several courses of antibiotics, and the physician sent me to the emergency department. I was admitted to the hospital, but I had to wait until 4 a.m. before a bed was available. Needless to say, I did not get any sleep that night. When two residents showed up in my room to do a brief patient history, they asked me about the drugs I had previously taken for pneumonia. Normally, I am on my game and can rattle off the name of many pharmaceuticals, but this morning, my brain was not in top shape. I started to say, “I can’t remember their names...” Immediately, one resident cut me off and interjected, “But can you at least remember what the drug names might have sounded like.” I continued my train of thought, “But they were third generation cephalosporins.” (This was the class of drug which all my previous antibiotics had been.) Of course, both residents instantly stopped what they were doing and stood in stunned silence with their mouths hanging open. After a few moments, one resident cleared his throat and said, “That’s all we need to know. Knowing your drugs were third generation cephalosporins is more than enough information to help us with your case.” The two residents quickly fled my room. As they left, I could hear them whispering, “How did that patient know her drugs were third generation cephalosporins?” The two residents seemed scared and never came back to my room by themselves; they never asked me any more questions.

It is experiences like this which make staying in the hospital more exciting. It’s always fun to keep doctors-in-training on their toes.

Tuesday, April 10, 2018

You must be on the road to recovery

Since getting a trach tube and starting invasive ventilation nearly a year ago, people suddenly assume I am now on the road to recovery. It is odd how people conclude because I no longer have a mask strapped to my face to breathe using a BiPAP machine but have a tube surgically place in my neck connected to a ventilator that this signifies me feeling better. Actually, needing the use of invasive ventilation is a sign that my health is deteriorating. I no longer have the muscle strength to breathe on my own. I have become reliant on a machine, which is life support, to sustain my daily breathing needs.

When people believe that I am “all better”, I politely smile and thank the person for their remark. As much as I desperately want to give the person a quick lesson about what it means when a person needs to use invasive ventilation, I bite my lip and refrain from saying anything. Who am I to dash their hopes about my health?

It’s hard for most people to understand what it means to be chronically ill. It’s hard to understand what it means to have a progressive disease. When most people get sick, they recover after a few days or a few weeks. Who could ever imagine being constantly sick for over nine years and having a disease which continues to cause more and more complications? For most people, it is unfathomable. For me, it’s my daily life.

Thursday, April 5, 2018

Always the same dream

As my mind drifts deeper and deeper into sleep, it seems I always have the same dream. I am in some large restaurant in which there is a HUGE buffet. There are multiple lines for many different types of food. There are endless varieties of pasta dishes; beef, steak, chicken, various other meat dishes, mashed potatoes and lots of gravy line another wall of the buffet; salad and all the fixings cover another buffet table. A bakery filled with all sorts of breads, cakes, pies and other sweet treats is situated in the middle of the room. As the buffet continues, there is an endless assortment of vegetable dishes followed by lots of different types of fruits. Sprinkled throughout the buffet are drink stations with all sorts of different soft drinks, lemonades and iced teas. It seems the buffet continues for a very long time with a vast assortment of food. The restaurant is packed. It is hard to move any where because there are so many people, and children are running everywhere.

As I gaze upon all the delicious food, my stomach growls. I am so hungry. I find the beginning of the buffet line. I patiently wait at the back of the line. The line moves so slowly. Parents are helping their kids fill their plates with food. The children are indecisive as to what they want on their plate. The adults take what seems like a lifetime to move down the buffet.

As I finally approach the food, people cut in front of me in line. Then, by the time I get to the food I really want to eat, the pans are empty. I am so hungry. I just want to grab a couple items and go back to my table and eat...but it seems I am only able to scrounge up a few morsels of food. Reluctantly, I leave the buffet line and fight my way through the mobs of people to get back to my table. I enjoy a few bites of food, and then I have to leave.

Lately, this dream has played out over and over again in my sleep. I know my body is very hungry. I am trying my best to eat, but after taking a few bites of food, I start feeling quite sick. It does not matter how much food surrounds me, I simply become too ill from eating. It is frustrating. I know my body needs food, but I am not able to overcome the pain and nausea I experience from chronic pancreatitis to properly eat. The dream continues...

Tuesday, April 3, 2018

A year of obedience

After my mom's car accident, I made a promise to God. "LORD, for the next year, I will be Your obedient servant. I will take care of my mom and drive her any place she needs to go. I will not whine or complain. As much as this Mitochondrial Disease challenges me, I know the obstacles my mom is facing are far greater. I have no excuse to grumble."

During the next year, my mom had endless appointments. My mom could not drive. So, whenever she had an appointment, I was her chauffeur. Often her appointments were 30-40 minutes away from our home. I mustered up all my energy to make the drive. During her appointments, I would sit in the car and take a nap. When we arrived home, I would dutifully go to the kitchen and prepare supper for my mom and dad. (My mom would be completely exhausted from her appointment and would quickly fall asleep...and my dad has very limited cooking skills. He can cook a frozen pizza in the oven and burn grilled cheese sandwiches on the stove. So, if food was to be prepared, I was the one who had to do it.)

As the weeks and months rolled by, my level of fatigue grew worse and worse. By 7 o'clock in the evening, I was in bed. When morning came, I fought with all my might to get out of bed. I would go to the kitchen and make a strong brew of tea to help get my body moving. Each day, I made an assessment of my mom's health progress. I would mentally note every small success. "Today, my mom sat for five minutes at the dining room table before she had to go back to bed. Today, my mom walked for a minute without needing to take a break." Each small task she could complete was a giant victory in my book. The more she healed, the sooner I knew my services would no longer be necessary.

By the seventh month of my promise, I began to doubt I could keep my vow to God. My body was so taxed of energy, it could no longer digest food. Thankfully, my mom's one doctor's appointment was located a few blocks from a food cooperative. During my mom's appointments, I would sneak off to the tiny store and commandeer a half gallon of organic whole milk. I would briskly shake the glass bottle, mixing the cream layer with the rest of the milk. I then had about ten minutes to chug the half gallon of milk before I needed to pick my mom back up. The ice cold dairy delight was magic to my body--it gave me an incredible boost of energy. I then had enough strength to drive my mom and me back home.

As month nine came to pass, my body was constantly shaking with fatigue. As my mom gained stamina, she wanted to do more and more tasks. Normally, I would have been very against her exerting herself and possibly injuring herself, but at the moment, I was completely out of energy. Anything she could do meant I could save my energy for other undertakings. I did not hinder her enthusiasm.

Right around month ten, my mom had recovered enough and had gained the courage to attempt to drive. In my normal state, I would have insisted to continue driving her. But in my energy deprived state, I was her biggest cheerleader. I would even encourage her to drive and attempt farther distances. Very quickly, she gained the confidence to drive short distances.

Before the completion of one full year, my parents decided to go visit family and friends in warmer climates. (My mom noticed she did much better in warmer weather, and with her physician's support, my mom happily went on an extended vacation.) By this time, my fatigue was so intense, I constantly had tears in my eyes. I was never sure if I might just collapse from sheer exhaustion. When my parents left on their extended holiday, I went to bed and stayed there for four months. I did little more than crawl to the bathroom and back to my bed. Every fiber of my body quivered with extreme tiredness. I praised and thanked God my parents went out of town, and I was allowed to rest unhindered for a very long time. Although I did not technically assist my mom for one full year, I know God arranged everything to give me a much needed rest.

When the one full year of obedience came to pass, I thanked God for the opportunity to grow in my obedience. I thanked God for the opportunity to quell my tongue. Before my mom's accident, I would talk haphazardly, never thinking about what flowed out of my mouth. Now, I am much more guarded in my speech and try not to make a fuss about my health. Although many years have passed, my mom continues having health challenges from her automobile accident injuries. As frustrated as some situation leave her, I try to rally behind her, encourage her and remind her how far she has come. Even if I can no longer physically help her, I try my best to cheer her on.

(Link to my mom’s car accident blog post, click here)


Thursday, March 29, 2018

The day the earth rent (Part Two)

As I was walking down the small embankment, there on the side of the hill was the most beautiful squash plant. (Side note: my mom loves gardening, and we had a huge backyard garden. Unfortunately, that year, all of her squash plants had been infected with a fungus. They all shriveled up and died without producing much fruit.) But, now, as if God was giving me a physical sign that everything would be ok, here was this glorious squash plant loaded with perfect squash. I stopped to briefly appreciate the plant and made a mental note to come back another day, a day in which I was not so distraught, and gather God's rich abundance.

When I got home, I did not know what to do. My dad was out of town for a business meeting. We only had two cars, which meant I was stuck at home. I received a call from the ambulance service telling me which hospital they were going to take my mom to. I thanked the man for his call, but knowing this information made me even more nervous. My mom was hurt and was going to the hospital. Oh how I wished I could be with her at that moment. I patiently waited what seemed like an eternity for my dad to arrive home. Finally, I decided to call my dad and ask where he was. Thankfully, my dad answered his mobile phone. He was driving and was about 30 minutes from home. I did not divulge to my dad any details about my mom's car accident. Instead, I hung up the phone and tried to distract myself for the next 30 minutes.

When my dad pulled into the driveway, I immediately, and as calmly as I could, ran out of the house to meet my dad. I tried to casually say we needed to go to the city, about a 20 minute drive away. My dad seemed a bit confused, but he did not question me. As we were nearing the exit for the hospital, I quickly blurted out, "We need to exit here. Mom has been in a slight car accident. She is not seriously hurt. We need to pick her up from the hospital." Although I was not sure about any of the information I relayed to my dad, I desperately wanted to believe it was true.

When we arrived at the hospital, we were told my mom would be out shortly. After waiting 90 minutes, my mom was finally discharged from the emergency department. My mom looked bedraggled and very disoriented, but she was able to speak and was able to stagger out the door. On the way home, my mom related to us what happened. She was near Walmart on a two-lane country road. She slowed up to make a left-hand turn. A car was barreling down the road behind her at 50 miles an hour down the hill. The driver seemed to be distracted and did not break until just a few feet before she slammed into the back of my mom's car. My mom's car was pushed across the oncoming lane of traffic and thankfully came to a stop at the entrance to the road that leads to Walmart (out of the oncoming lane of traffic). My mom's car as well as the other car were total loses.

Upon arriving home, my mom immediately went to the couch to lie down. She instantly fell asleep. The next day, my mom did not move. She aroused from her sleepy stupor a few times, but she was mostly unconscious for the entire day. The same thing happened for the next several days. I knew something was not right. I knew she must have suffered whiplash and possibly had an injury to her brain. As I hovered over my mom for those days, I kept praying to God to heal my mom. I kept repeating Romans 8:28 "And we know that all things work together for good to them that love God, to them who are called according to His purpose." I would scream out to God, "I am standing on Your promises. I am trusting that everything will be ok. Make this all work out for good. Heal my mom!"

Slowly over the next year, my mom showed signs of improvement. She very gradually was able to leave the couch. Very slowly, she could walk using a cane but often would nearly fall over due to dizziness and unsteadiness on her feet. My mom had dyskinesia episodes in which her body would shake uncontrollably, almost like a prolonged seizure. It seemed my mom had injured part of her brain. Her brain needed time to heal, and her body had to re-learn how to communicate with her brain. It was a very slow process, but my mom did show improvements. During this entire time, I was incredibly sorrowful. Why hadn't I stopped my mom's car? Why did I not listen to the voice screaming at me? Why was I so disobedient? Full of much anguish, I made a promise to God. I vowed I would be obedient for one year.

(Link to Part One click here)



Tuesday, March 27, 2018

The day the earth rent (Part One)

Several years ago, I woke up to an absolutely, picture-perfect day. The sun was brightly shining, and the temperature was just perfect--not too hot, not too cold, but just right to wear a short-sleeved shirt without a jacket. The birds were singing in the tree outside my window. Yes, this was a perfect day. As I went through my day, I was longing to go someplace, any place to escape the confines of the house and to have an excuse to enjoy this glorious weather. As these thoughts meandered through my mind, my mom asked if I wanted to go with her to McDonald's so she could get a Diet Coke. Of course, I eagerly said yes!

As we were leaving the McDonald's parking lot to go home, I desperately wanted to continue our adventure. But where could we go? Not being able to come up with any ideas, I allowed my mom to continue our journey home. When we got home, I reluctantly went inside. My mom then informed me she was going to go to Walmart. "Oh man! Why couldn't she have said this before!?" I wanted to go with her, but it was getting late. I had made food before we left for McDonald's and was very hungry. If I went back out with my mom, I might become very sick from not eating. With a heavy heart, I decided to stay home.

As my mom was leaving, she was trying to find an item she needed to return to Walmart. I helped in the search, but mysteriously, the item could not be found. For some unknown reason, a sense of panic took hold of me. I felt as though I needed to find the item. I felt as though I needed to delay my mom's departure. My mom decided to leave for Walmart without the item. The panic within me was growing. "I need to stop her. I need to stop her car!" These desperate words rang through my mind. But, I had no logical reason for stopping her. I stood in the kitchen, watching my mom drive out the driveway. "Stop her! YOU MUST STOP HER!!!" screamed in my ears. Instead of moving, I remained rooted to the ground. Suddenly, the world rent. I saw what was like two worlds existing at one time. I saw myself run out the kitchen door and down the driveway toward my mom's car. I saw myself wave down my mom, and she stopped the car. At the same time, I saw another world in which I stood with my feet planted to the floor, and my mom's car drove down the street. Although the incident was terribly frightful, I turned away from the kitchen window and started making myself a plate of food from the pots and pans simmering on the stove.

It seemed like only a few moments before the phone rang. I saw on the caller ID it was my mom. In a chaotic tone she said, "I have been in an accident. I am going to the hospital." She then hung up. Immediately, my heart sank, my stomach did a flip-flop and I thought I was going to collapse to the ground. My mom had only just left. Where was the accident? How badly was she hurt?

In an instant, I sprang out our kitchen door and was running down our driveway. I ran across the street, through a church parking lot and up a small embankment which overlooked the highway. I frantically searched for my mom. Where was she!? In a frenzy, I was praying to God that my mom was not badly hurt. As I stood on the small hill, I suddenly saw an ambulance enter the freeway on-ramp. As the ambulance was ascending the ramp, it turned on its lights and siren. I watched as the ambulance drove down the highway and out of sight. My heart sank again. My mind quickly started remembering information from my physics class. If my mom was on the highway when the accident happened, she would have been going 55-60 miles per hour. The force of the impact would have been very great. Her injuries would be severe. As this chaos of information was streaming through my head, I heard a reassuring voice, "Everything will be ok." I called back to God, "I know, but it is so hard to not be worried when I do not know what happened or how my mom is!" I then felt the urge to go back home.

(Link to Part Two click here)