Part Four: At the ED. Am I sick or will I be dismissed home?

After a few moments, the man at the emergency department (ED) check-in counter acknowledges me. He asks why I am here. I decide to not be straight forward. I don’t want to say I am having trouble breathing. My pulmonologist said I was not sick. If I indeed have a respiratory infection, I want to ED physician to make that call without being prompted. I am having abdominal pain. My pancreas is hurting. I know if I present as if I might have a panceratitis attack, I can get pain medication. If I say I have breathing problems, there is little chance of getting strong narcotics to help with my throbbing headache, stiff neck and generalized pain throughout my body. I tell the gentleman, “Abdominal pain.” He asks for my identification. He gives me a patient wristband and wheels me over to an outlet. He plugs in my ventilator and heater/humidifier.

I look around the waiting room and am relieved to see there are not a lot of people. I thank God that this means I will not have a long wait. A nurse calls my name. When she sees I am on a ventilator, she mumbles she cannot take me back to triage. She tells me to remain where I am. I wait about 30 minutes. In the meantime, other people are called back to triage. I notice that instead of using the front triage area, they are being taken down a long hallway to a far away room.

When my name is called again, the nurse triages me at the front station. She ask why I am here. I gasp for breath and state I have abdominal pain. Speaking causes me to cough. The nurse takes my vitals. The only reading I am concerned with is my temperature. I see the reading on the machine is 98.5 degrees. The nurse then sticks the thermometer into my mouth. It beeps. The screen on the machine never changes. It continues to read 98.5 degrees. I am fairly confident the machine did not take my temperature. I do not say anything as I know a fever with rapid heart rate and fast breathing will signal I am in distress. I will be pushed back immediately to the ED. I know God is directing everything. If the thermometer is not supposed to record I have a fever, it is God’s doing. The nurse scans her computer. The only open room is in the trauma center. She calls back to tell them I am coming on a home ventilator.

A medical assistant wheels me to the trauma center. As I enter the ED, I hear someone say, “What is she hear for?” Another voice answers, “Abdominal pain and shortness of breath.” The first voice says, “Not another medicine case. Why do they keep sending us medical cases?” The second voice responds, “She’s on a home ventilator. This was the only place available. We can’t leave her in the waiting room on a home ventilator.”

My ED cubicle does not have a bed. I am left in the hall while a gurney is commandeered. I sit in my wheelchair and cough up lots of thick yellow sputum. Medical personnel fly around me as they race from bed to bed. A male physician looks at me and asks the medical assistant, “What is she here for?” The medical assistant says, “Abdominal pain...” And before she can say anything else, the doctor interjects, “And shortness of breath.” (My rapid breathing is quite evident to the doctor.)

A bed swiftly arrives in the ED cubicle. I am wheeled into the shared double room and helped into the bed. (Before coming to the ED, I hid my PICC line under an Ace bandage. I did not want my PICC line to arouse any questions. My efforts were useless.) As soon as I take off my jacket, the nurse sees the Ace bandage. She asks, “Is there a PICC line under there?” Knowing God is directing everything, I say, “Yes.” She takes the bandage off and immediately collects blood from it. I am thrilled she is using my PICC line instead of poking me with a needle.

An ED physician starts asking me about my abdominal pain, but he is immediately concerned with my breathing. He asks me about my respiratory issues. He orders a chest X-ray, blood cultures, abdominal CT scan and fentanyl for the pain. I am in disbelief that I am going to be getting fentanyl. No one EVER gives me fentanyl, or I have to be screaming in pain for 12 hours before a tiny dose is given. This doctor is giving fentanyl without me asking or begging for it! Oh happy day!

I am given the fentanyl and am shocked I do not feel anything. Usually there is some sensation of the drug entering my system, but this time I feel nothing. The pain remains the same. Very quickly two radiology technicians are at my side preparing me for a chest X-ray. An X-ray machine attached to the ceiling is swung into place. A technician yells, “X-ray in use.” The machine hums and then beeps. My chest X-ray appears on a computer screen. I quickly scan the X-ray. It looks as though there is diffuse cloudiness in my right lung. Although I am a novice at reading X-rays, it looks like pneumonia.



(For the link to Part Five, click here)

Part Three: To go or to stay? What does the thermometer say?

When we arrived at the hotel, I am grateful to be away from the medical center. I eat a few bits of food, but I am very nauseous. My mom leaves to get supper and have her computer fixed. I collapse on the couch and prop my legs up on the wall. Oh how glorious it is to have the blood, which has pooled in my legs from sitting up for many hours, now return back to the rest of my body.

As I lie there, I ponder the doctor's appointment. My heart is broken. I feel so defeated. I am sick...so sick. But my physician said I was fine. Moreover, she said this would be a normal state for me as long as I have pseudomonas. I want to burst forth into sobs, but I am too tired to cry. I tell myself I will not go to the emergency department (ED). Furthermore, I will not stay to attend my infectious disease doctor’s appointment in two days. No, I will just sleep through the night and go home in the morning. There is no use seeking further medical treatment. My pulmonologist made it clear I was not sick.

I try to read the Bible to push away the thoughts raging in my head, but I cannot concentrate. My head throbs in pain. My neck is sore. I feel disoriented. I close my eyes, but sleep never comes. I feel as though my fever has broke. I have shed my winter parka and am now only wearing a fleece jacket. I tell myself I must be feeling better.

Around 7 p.m. I get up. I tell myself if I have a temperature of less than 101 degrees, I will not go to the ED. The thermometer beeps. It reads 101 degrees. I silently moan. “Oh, this is not good. I still have a fever. I need to seek medical treatment.” I decide I am too sick to not do anything. I resolve to go to the ED. I lie back down on the couch.

Fifteen minutes later, my mom calls. She informs me she is on her way back to the hotel. I know I should gather some items together for my trip to the ED, but I am too tired and too defeated to move. A short time later, my mom arrives back at the hotel. I reluctantly get up and start the process of packing for the ED and probable stay at the hospital. My mom and I drive to the ED. She wheels me to the check-in desk and leaves. All too soon, it is time to face the medical world. After five glorious months away from the hospital, it is now time to re-enter a place of sleep deprivation and constant vigilance.


(For the link to Part Four, click here)

Part Two: 102.6 degree fever. You are not sick.

We arrive at my doctor’s appointment a few minutes ahead of time. I see an odd sight: the waiting room is packed with people. I know the physician must be running behind. As I sit and allow my heater/humidifier on my ventilator to moisten my lungs, I can feel the thick, sticky sputum in my lungs spring back to life.

(My heater/humidifier requires an electrical source for power as it does not have a battery. This means, while traveling, my lungs are filled with cold, dry air. This causes my airways to become ridgid. My sputum becomes too thick to cough up or move around my lungs. Once my lungs are rehydrated, my airways open up, and my sputum thins out, allowing it to move around my lungs. This causes me to cough. And soon, my lungs are free and clear from the accumulation of sputum, and my breathing returns back to normal.)

As my lungs absorb moisture, lots and lots of mucus begins rumbling around my lungs. Soon, I am violently coughing, and coughing up lots and lots of “junk”. Thankfully, the wait to be called back to a room is only about 40 minutes. I am grateful to be leaving the crowded waiting room. A medical assistant takes my vitals. My blood pressure is normal. My heart rate is 109 beats per minute. The medical assistant notices I feel warm. She takes my temperature using a forehead thermometer. It reads 96.8 degrees. I tell the woman it is not an accurate reading. She finds an oral thermometer. This device reads 102.1 degrees. The assistant copies down my vitals to my medical form and leaves.

A short while later, one of my pulmonologist’s fellows enters the room. I have had this fellow before. She is rather rude. I tell her of my recent health decline. She tells me it’s nothing to be concerned about. She listens to my lungs. She tells me there is nothing wrong. She leaves. A short while later, the medical assistant returns to take another set of vitals. This time the oral thermometer reads 102.6 degrees. My blood pressure is 142/83, and my heart rate is 136 beats per minute. She leaves. The medical assistant returns with the forehead thermometer. This device reads 98.3 degrees. Clearly there is an issue with the forehead thermometer. The medical assistant reports both temperature readings to the fellow.

After what seems to be an unusually long delay between seeing the fellow and seeing the pulmonologist, my doctor finally enters the room. She seems to be tired and in a negative mood. She tells me all my symptoms are due to my chronic pseudomonas infection. I am just going to have to live with it. My mom interjects, “But she has a fever of 102.6 degrees!” The physician says I have a temperature because I am wearing a thick jacket. She continues to state when my temperature was taken without my jacket it was 98.3 degrees. I tell the doctor the readings were taken at the exact same time. One was using the forehead thermometer, and the other was using the oral thermometer. Obviously there is an issue with the forehead thermometer. I go on to say I also took my temperature using my own thermometer. It gave me a reading of 102.1 degrees. I have a fever. The doctor dismisses the information.

The pulmonologist goes on to say she briefly reviewed the notes from the infectious disease doctor. She also called the doctor. They both were in agreement my symptoms were due to me being colonized with pseudomonas. Despite coughing my head off, coughing up lots and lots of sputum and fighting so hard to breathe I can barely say more than a word or two without gasping for my next breath, my doctor tells me I am not sick.

At the end of the appointment, she finally says, “Well, if you think you are sick, you are free to roll across the street (to the emergency department).” I am against going to the emergency department (ED) because my physician, who knows me and my medical case, says I am not ill. My mom, on the other hand, insists I go. By this time, my head is spinning and is throbbing, my body is screaming in pain and I am becoming extremely confused. I tell my doctor and mom I need to go to the hotel and lie down. Then maybe later I will go to the ED. My physician says she will have the fellow call over to the ED and let them know I will be coming. We part ways. My mom and I head for the hotel.


(For the link to Part Three, click here)

Part One: When minor symptoms become worrisome

For the last several weeks, I have felt very ill. I have had a cough which has progressively gotten worse, fatigue, horrible headaches, neck pain and confusion spells. I go to my infectious disease (ID) doctor searching for answers. When a chest X-ray comes back as normal, I am assured I will be contacted when my sputum culture results come back from the lab. I wait and wait. The doctor never calls.

I am not terribly worried. I have a follow-up appointment with my pulmonologist in a few weeks. Two days after that appointment, I have an appointment to see my ID doctor. I know everything will be figured out. My pulmonologist and ID doctor know each and work together. They will have a plan to help me.

The night before my appointment with my pulmonologist, I attend Bible study. I feel very off-balanced. I cannot focus or recall facts to mind. I get lost in the middle of my sentences. I want to scream; I want to shout, “I am so lost and confused. Someone help me!!!” I do my best to get through the session.

When I get home, I need to finish packing for my doctor’s appointment. I roam around the house, lost in a fog. I know I need to make food for the trip. I know I need to place my bags in the car. The tasks seem so difficult. I manage to do the best I can and collapse into bed. Despite being completely exhausted, I cannot sleep. Finally around 2:30 a.m., I fall asleep. A few short hours, my alarm startles me awake. It’s time to get up and get on the road.

I am surprised when I sleepily move about the house I feel ok. I don’t feel great, but I feel better than I did the night before. When we begin our journey, I can feel my body is starting to act up. My airways feel tight. I start coughing. I continue to tell myself I am feeling fine. As the trip continues, my head aches. I become nauseas. I become extremely cold. I put on my thick winter parka and winter gloves. My body begins to warm up. Soon, I am in a cycle of being very hot and then profoundly cold. I think to myself, “Well, if I am going to be sick, at least I am going to see my doctor. She will be able to help me out.” An hour before my appointment, I find a thermometer. It reads 100.8 degrees. My heart sinks. I don’t run fevers unless I am extremely sick. I dread my day may not end in a relaxing night at the hotel.


(For the link to Part Two, click here)

May our words bring blessing and not division

Many years ago, I met one of the most wonderful people I have ever known. The woman is kind, courteous and caring. Her ability to see the good in all situations is breath-taking. Her language is one which brings healing and not division. Not only does she know the Bible, she acts out its principles in all that she says and does. It is easy for one to want to emulate and learn from this godly woman, who also happens to be married to a pastor.

One Sunday, there was a function at church. I attended the function and brought along a friend. My friend did not have much Bible knowledge. The ways she thought and lived her life were based on whatever was right in her own eyes. My friend soon found the pastor's wife. They immediately struck up a conversation. Very soon, a topic arose in which I knew both women had vastly different ideas about. My friend boldly stated her opinion. The pastor's wife politely disagreed and stated some biblical principles to support her point. My friend refused to listen and continued her rant. I could see the pastor's wife was very frustrated. But, instead of continuing the disagreement, she steered the conversation toward a different subject matter.

This situation has always remained with me. The pastor's wife could have acted in so many ways which would have caused division and a feud to arise. Instead, she politely stated her case, and then dropped the subject. The way in which she did it was so effortless. I marvel at the pastor's wife's ability to move passed her feelings and emotions. It was more important for her to be a godly woman than to cause a dispute.

For many, many years, I have tried to copy the pastor's wife when I find myself in similar situations. I, however, allow my emotions and my need to be right to override the more pressing matter of bridling my tongue. Time after time, I would find myself at odds with people about a topic. The end of the conversation was almost always bitter words and hurt feelings.

Recently, I was talking to an acquaintance. A subject arose in which I have very strong opinions. My friend twisted what I said to make her point. I was enraged and annoyed my words were being used to support someone else's viewpoint. I desperately wanted to correct the woman, but instead I dropped the subject and turned to a different topic.

When I was reflecting back on the situation, I was shocked I was actually able to emulate the pastor's wife. Oh, I had finally done it! I had finally been able to control my tongue! What a sweet, sweet victory! Hopefully in the days, weeks and months to come, I can continue on this positive path and be a role model for others.

"With the tongue we bless our Lord and Father, and with it we curse men, who have been made in God's likeness. Out of the same mouth come both blessing and cursing. My brethren, this should not be" (James 3:9-10).

Waiting for the phone call which never comes

I sit near the phone. “Oh, any moment the doctor is going to call me. Any moment, I will find out what the treatment plan is. Any moment I will soon be on the path to better health.” The minutes tick by. The phone remains silent. The hands on the clock go round and round. Soon it is 5 p.m. “Well,” I sigh, “maybe the doctor will call tomorrow.” The next day, I again wait all day next to the phone...and the call never comes.

My last appointment with my physician seemed full of hope and promise that soon I would be back on antibiotics to get rid of my pseudomonas infection. Instead, time has passed, my infection has worsened and I am feeling quite ill. The cycle, which I have tried to avoid, has happened again. I wonder how long it will be before I am back in the hospital. My breathing is fast; my lungs are heavy; my energy level is near zero. How long can my body fight off this bacteria before this infection rages out of control?

I could be frustrated or angry, but I know everything is from God. Numerous times, He could have allowed me to receive antibiotics, but over and over again there have been roadblocks. It is almost comical the multitude of things which have gone wrong over the last one and a half years fighting this infection. The more ridiculous the impediment, the more I throw up my hands and say to God, “Well, then. I guess this isn’t Your will for me. Thanks for making it so abundantly clear. I just hope You decide to heal me soon because I am running out of energy.”

Praying I am soon on the path to better health.

“Heal me, O LORD, and I shall be healed. Save me and I shall be saved. For You are my praise” (Jeremiah 17:14).

In the beginning...another new adventure

No matter where we are in life, we need challenges—little ones, big ones; tasks which seem impossible and small feats we easily overlook. This week, I am starting an adventure which seems to be far too arduous to take on. For the next year, I am going to type up the entire Torah on my computer.

Background:
In Jewish synagogues and Torah observant congregations, the Torah—Genesis, Exodus, Leviticus, Numbers and Deuteronomy—is divided into 54 portions and read through once every year. The first Torah reading begins on the Shabbat after the Feast of Sukkot and concludes on the Shabbat of the following Feast of a Sukkot. This year, the final Torah portion was read on Saturday. On Monday, the Torah scroll was completely unrolled and rolled back up to start at the beginning in Genesis chapter one. If I am able to keep up with the Torah readings, I should finish writing the final words of the Book of Deuteronomy on Saturday, October 3, 2020.

The challenge:
I would love to hand write not only the Torah but the entire Bible. Unfortunately, my hand cramps up just holding a pen much less actually using the pen to write. I can only write a few words before extreme pain plagues my hand muscles. I have decided to type up the first five books of the Bible. I can type for short periods of time, but again, Mitochondrial Disease causes the muscles in my hands and arms to be riddled with pain, fatigue and muscle spasms. To accomplish this feat, I will need a lot of patience, endurance and heat and ice to help with the pain.


Now it is time to get started.
"In the beginning, God created the heavens and the earth..." (Genesis 1:1)