Chronically ill--yearning for fellowship, devastated by reality

For the last couple years, I have made it a habit to not make friends with individuals who have chronic medical conditions similar to my own. Folks with Mitochondrial Disease and associated conditions such as Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, gastroparesis, etc., all seem to have a commonality--anyone I meet with these conditions usually passes away. I stopped making friends when it seemed month after month, I would lose another dearly loved friend. My heart is too fragile. I just cannot handle the grief.

Today, I read on a Facebook group about a woman emotionally struggling with her medical conditons. I did a very bad, impulsive thing—I messaged the person on Facebook. I usually do not get involved in others' lives, but I was so moved. Now, I fear, I might have made another friend with Mitochondrial Disease. This, in itself, is not a bad thing, but I am not sure I am ready to possibly endure more heartache. Despite my concerns, it seems God had prearranged this date from the beginning of time.

A few hours after messaging this woman, I see a post on Facebook that another one of my dear Mitochondrial Disease warriors passed away today. My eyes swell with tears; my breath catches in my throat. "Oh LORD, when will this all end? When will my heart stop breaking?" But I go on, "Thank You for sending another sweet soul into my life. Although my love may seem limited, I know Yours is infinite. I know I draw on Your love to keep on giving to others. May we all find comfort in Your arms. May Your love, mercy and grace carry us through each day--through the times of joy and through the times of sorrow. May we all look forward to that day, 'and He will wipe away every tear from their eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or pain; the first things have passed away' (Revelation 21:4). Amen."


In loving memory of Jaquie Beckwith

Mabel, Mabel...I don’t think you’re able

As I sit in my hospital bed, I become very sick. I ring my call light. It takes 20 minutes for nurse Mabel to answer. I am on the verge of throwing up. I ask Mabel for zofran. She refuses to give me any. She says she has to do her assessment first. She takes her sweet time checking for my pulses, looking at my IV sites, etc. I shake uncontrollably from the severe pain and discomfort in my GI tract. Mabel scorns me for moving during her assessment. I tell her I am going to throw up. I need something to puke in. She leisurely searches my room. When I start throwing up, she gives me a towel. She finishes her assessment. She then wanders off to get me some zofran.

It takes about 20 minutes for Mabel to return. She gives me the zofran and leaves. She never checks up on me.

Two hours later, I become sick again. I ring my call light. This time, Mabel responds within five minutes. I ask for some pain medication. She leaves. I notice Mabel is standing outside my room not doing anything. When a patient leaves a room next to mine, Mabel begins organizing and cleaning the room. I wait 25 minutes and decide to push my call light again. When Mabel sees my light, she says to a nurse in the hallway, “These people have no patience.” Mabel continues to meander around the hallway. When another nurse sees my call light on, she asks Mabel, “Do you want me to get that room for you?” Mabel responds, “No. She is just going to have to learn to wait.”

Five minutes pass and Mabel finally gets the pain medication. She administers the medicine and seems unconcerned about my condition. My pulse oximeter keeps alarming. It has been on for a number of days and is failing. I ask Mabel for a new pulse oximeter. She says she will get one. I wait and wait. She never returns with one. Thankfully, the respiratory therapist checks in on me. I ask him for a new pulse oximeter for my finger. He immediately gets one and changes it out. Finally my machine stops beeping.

Mabel never checks in on me to see how my pain and nausea are. She returns to my room 2.5 hours later with a scheduled medicine. Mabel never asks about my symptoms.

I am grateful when Mabel’s shift ends. Stress melts away. Now I no longer have to fear that if I become sick I will have to wait until my nurse feels like getting me some medicine. When my daytime nurse begins her shift, I breathe a sigh of relief. The day nurse is an exceptional human being. She gives her patients the utmost respect and speedily responds to call lights. Like night and day are the differences between these two nurses. I pray Mabel learns compassion. I pray Mabel has her eyes opened that her responsibility as a nurse is to tend to her patients. 

Hearing a homeless man’s prayer

After waking up at 4:30 in the morning and making the long drive to see my pulmonologist, my body is completely taxed of all its energy. I am running a fever, and my pseudomonas infection is raging out of control. My pulmonologist tells me to go to the emergency department (ED) for medical treatment. I am too exhausted. I go to the hotel and take a four hour nap.

When returning to the hospital, my heart sinks as I see the ED waiting room filled with far too many sick and injured people. The waiting room roars with the noise of so many people crammed into a space far too small. I check into the front desk. Despite having great difficulty breathing, the checkin clerk does not seem to notice my labored breathing. I am told I have to wait until I am called back to be triaged.

I wait and wait. Thirty, forty minutes pass. More and more mucus accumulates in my airways. I am coughing and fighting to breathe. I can sense the folks in the waiting room are becoming alarmed at my state. A woman tells the checkin clerk I need to be seen quickly. Again, the urgent words seem to fall on deaf ears.

A man becomes enraged at his wait. A nurse informs the man they are very busy. It will be about eight hours to be seen in the ED. 

A homeless man approaches the checkin desk. As he waits to be assisted by the clerk, the man notices the dire straight I am in. He says something to me, but I cannot understand him over my coughing spells. Like lightening, the man springs in front of me, takes hold of both my hands and starts praying. He begins with the Lord’s Prayer and then goes on to ask in Jesus’ name for me to be able to breathe easier. He continues speaking a powerful prayer for several minutes. When the checkin worker notices the man, she demands that the man leave me alone.

Very shortly after this, I am called back to triage. The checkin clerk is chastened by a colleague for making me wait. “This is a ventilator. Did you not notice she had a ventilator? This is a very serious matter. We do not mess around with people on ventilators. They need to be seen immediately.”

The triage nurse takes note of my ragged breathing. She tries to find me a room in the ED. She looks on her computer screen and sees one room has just had its patient taken up to a hospital room. The nurse summons another employee to run back and get the room cleaned as quickly as possible. The triage nurse tells me she will not make me go back out into the waiting room. She tells me she can’t believe the homeless man was messing around with my ventilator. She tells me she does not want anything else to happen to me.

The rest of my ED story is a long story for another day. But I continue to smile when I think about the homeless man. He asked for me to have fast relief from my symptoms. He asked for me to be able to breathe easily again. It seems God heard this man’s prayers. God changed the image of a man praying over sick person into an image of a man trying to hurt a sick person. Due to this great illusion, I was taken back to triage and quickly given a room in the ED, skipping the eight hour wait. “Praise God from the heights. Praise God all the earth. Praise God for hearing prayer. Praise God for this homeless man, a wonderful servant of the LORD!”

Command conflict

Several months ago, as my parents were planning their grand adventure to Hawaii in celebration of their 40th wedding anniversary, I was faced with a dilemma. My parents needed me to picked them up at the airport on a Saturday.

Most people would not be phased by this request. However, I observe Shabbat--a weekly observance which begins on Friday at sundown and ends on Saturday at sundown. I am always at a loss when two commands which God gives conflict with each other. In my situation, the first command is to guard the sabbath. One is to keep the day holy--to keep it set apart from the rest of the days of the week. Driving to the airport would degrade the day to just a common, ordinary day. The second command is to honor one's father and mother. If I decided not to pick my parents up at the airport, I would be neglecting my duty as a daughter to honor my parents' request.

For several months, I was in agony. "Oh LORD, what should I do? I want to honor You, but I also want to honor my parents. Please make this all work out. Please allow me to keep Shabbat without neglecting my parents." The weeks rolled by, and nothing seemed to happen.

Thursday night before my parents were to arrive home, my mom contacts me. "The city in which we have a connecting flight is supposed to receive bad storms tomorrow and Saturday. The airlines are giving us the option to reschedule our return flight home for another day. Is it ok if we come home on Tuesday? Will you be able to pick us up?" As my mom's words process in my head, I nearly leap for joy! I say, "Tuesday is just fine. I will see you in a couple days."

When the conversation with my mom ends, I start praising God. "Oh thank You LORD!!! Thank You for the storms. Thank You for allowing my parents to reschedule their flights to avoid possible travel delays. Thank You for allowing me to observe Shabbat and also honor my parents. Thank You for hearing my prayers. Amen."

"If because of the sabbath, you turn your foot
From doing your own pleasure on My holy day,
And call the sabbath a delight, the holy day of the LORD honorable,
And honor it, desisting from your own ways,
From seeking your own pleasure
And speaking your own word,
Then you will take delight in the LORD,
And I will make you ride on the heights of the earth;
And I will feed you with the heritage of Jacob your father,
For the mouth of the LORD has spoke." (Isaiah 58:13-14)

Dr. H, finally resting (Part Two)

One of the unique aspects about Dr. H was her association with the hospital's neuromuscular disease (NMD) clinic. She was the only pulmonologist associated with the clinic and worked every day with folks with NMDs. She told me most of the patients in the NMD clinic had ALS. The other patients had various NMDs including Mitochondrial Disease. Dr. H was very unfamiliar with Mito; so, she requested the neurological team from the NMD clinic consult on my case. She told me she did not feel comfortable treating me without having guidance from physicians more knowledgeable about my condition.

The neuro team was amazing. The lead doctor interviewed me and asked which supplements I took. He quickly was able to tell me which supplements helped me and which symptoms most severely affected me. I was shocked and dumbfounded by this man's knowledge of Mito. He knew more about Mito than anyone I had ever met. He told me I most likely had a defect with complex II in the mitochondrial electron transport chain. He told me why certain supplements would not work and why some supplements were absolutely essential for my condition. He ordered a number of blood tests which further confirmed I had Mito. I wanted with all my heart for this doctor to be my neurologist. Unfortunately, this was not meant to be.

On my last visit with the neurologist, he explained, "In the neuromuscular disease clinic, we have mostly ALS patients. Approximately 90% of our patients have ALS. The other 10% are a hodgepodge of other neuromuscular conditions. We do have a number of Mito patients. But most of our Mito patients are mildly affected. Most of our Mito patients are in their late 50's or older. These patients find it more difficult to do their daily activities. They have fatigue which makes it more difficult to get through their day, but mostly, it is nothing which severely affects their lives. They just have to take time to rest when going between activities. Unfortunately, your case is very complex and severe. Clearly with your respiratory failure and severe muscle impairment, this is something which has drastically altered your life. You can no longer do most actitives of daily life. Your condition will likely shorten your life. Your case of Mito is the most severe I have ever seen. It is far too complicated for my team to treat. You need to find care elsewhere."

I was very grateful for this man's honesty, but his words broke my heart. I so desperately wanted to have a doctor with his knowledge. I so desperately wanted to be part of a NMD clinic in which there were multiple departments working together to treat the patient. What a tremendous blessing it would be to have all my doctors working together, to have all my doctors know each other and to have all my medical records easily accessible to all my physicians. But, this dream will just have to remain a dream.

When Dr. H read the neurologist's report and had a conference call with the neurology department, she learned I was not going to be accepted into the NMD clinic. With this information, she sadly informed me that she did not feel comfortable treating me without the guidance of the neurology team. She told me I was welcome to follow-up with her, but she suggested I try to find someone else with more knowledge about Mitochondrial Disease. After a week in the hospital, I was armed with some very valuable information about my respiratory failure and Mitochondrial Disease. Dr. H and I parted ways, and I sought care elsewhere.

A year and a half later, I was admitted to a hospital a short stone's throw from the hospital where Dr. H practiced. The heater on my ventilator abruptly stopped working. I needed to contact my durable medical equipment (DME) company. I looked up the company's information online. I saw when doing a Google search, the company had a Facebook page. Curious, I opened their Facebook page. On the company's page, there was a tribute to Dr. H. It had angel wings and said, "We will miss you." In shock, I scoured the Facebook page for more information. I found another post which stated Dr. H had passed away seven weeks ago. The hospital where Dr. H had worked for many, many years had just had a memorial service for her the week before. I was absolutely stunned! How can this be? She was so dedicated to her work. She was so devoted to her patients.

I called my DME company to arrange for a new heater to be picked up by my mom. When my mom exchanged the heaters, she inquired about Dr. H. The respiratory therapist said, "Dr. H died in her sleep. It was quite a shock to all of us."

Upon hearing how Dr. H died, I found it apropos. To the physician who never stopped working, to the doctor who never seemed to leave the hospital, she was now finally resting. "We give thanks to You, O LORD, for this wonderful servant. May she be highly praised for her dedication and devotion to helping so many folks fight to live with NMDs. Amen."


Link to Part One click here

Dr. H, finally resting (Part One)

When I first got my trach and was started on invasive ventilation, I was lost and confused. I went from doctor to doctor trying to find someone who knew about ventilators and tracheostomies. However, medical professional after medical professional knew almost nothing in this field.

My respiratory therapist (RT) recommended a physician who worked closely with my durable medical equipment company. She worked with individuals who had tracheostomies and ALS. My RT thought this doctor might be able to help out.

When scheduling my appointment, I was amazed that the doctor took time out of her busy schedule to review some medical records my doctor sent to her office. Upon reviewing the information, the physician wanted to see me the following week! The doctor actually rearranged her schedule so that I could get an appointment in her completely booked schedule!

At my appointment, the physician was shocked at my rapid breathing. She knew something was wrong and said she needed to admit me to the hospital to run some tests. Grateful for the assistance, I agreed to be hospitalized. The doctor then said, "I'll see you at the hospital." I was a bit baffled by this statement. It was nearly 3 p.m. By the time I would get to the emergency department (ED), get checked in and triaged, and then taken back to a room, it would be after the doctor would probably leave for the day. I did not believe the physician's words.

At 6:30 p.m., I was lying in a bed in the ED, and to my shock, here is my doctor! The physician asks what has been done. Although I have been at the ED for three hours, I had yet to see an ED physician. My doctor clicked through my ventilator settings and was appalled. "Who set this machine up for you? These are all wrong!" She continued by going through each setting and explained what each setting meant and what a person with neuromuscular disease should have as the setting. Very soon, my breathing was slowing down, but I was fighting hard against the machine because my lungs had been used to the wrong settings.

Finally, an ED doctor came into my room. My physician gave the ED doctor a lecture about my case and what she wanted to accomplish during my hospitalization. It was amazing listening to my doctor take such control over my case. Soon, I was admitted to the hospital and began my stay in the intensive care unit (ICU).

The precise details of my hospitalization are rather hazy. I remember my doctor, who I will call Dr. H, set up a number of tests to examine the function of my lungs and lung muscles. Dr. H discovered my diaphragm muscles were almost completely paralyzed. This meant when I deflated the cuff on my tracheostomy tube, which broke the closed circuit between my lungs and the ventilator, I was using my accessory breathing muscles to breathe and talk. Dr. H severely scorned me for deflating my cuff. "You are only using your accessory muscles! Your diaphragm is nearly paralyzed. The only way you can breathe and speak with your cuff down is because you are young. If you were my age, you would die if you tried to breathe with your cuff down. Keep your cuff up! You are going to burn out your respiratory muscles!"

As well meaning as Dr H was, I did not obey her orders. With Mito, if you do not use your muscles you lose them. If you use them, you might lose them anyway. I was not going to lose my ability to speak to save muscles I was going to lose anyway. Whenever my accessory breathing muscles stopped functioning, then I would stop deflating my cuff and thus lose the ability to speak. Until then, I am going to talk as much as I want, or as much as I can until I become too fatigued and have to inflate my tracheostomy cuff for full ventilator support.

Dr. H was also a funny character. She was very devoted to her career and only seemed to know medical lingo. Moreover, she often only used abbreviations. I could converse with Dr. H, but when she started speaking just letter abbreviations, I would have to stop her and ask her to explain her abbreviations. Dr. H would try to involve my mom in the conversation, but my mom was always lost. One time, Dr. H stopped for a few moments to speak with another doctor who stepped into my room. My mom softly tugged at my arm, "What is the doctor talking about? I can't understand her." I nearly start laughing and say, "I'll explain everything when she leaves." And that's exactly what I did because my mom could not follow the constant medical terminology the doctor used.

The one thing which stood out the most about Dr. H was her commitment to her patients. Although I was under the care of another critical care physician while in the ICU, Dr. H always came to visit me and directed my case. One the first day of my hospitalization when the clock hands showed the time as being 8 p.m., I assumed Dr. H was not going to visit me. But at 9:30, Dr. H entered my room. "Dr. H! What are you doing here!? Go home! I am not that important. Go to bed!" Dr. H firmly assured me she said she would visit me in the hospital. And now she was here. She told me a number of things came up for her during the day and this was the first time she could come to my room. I was shocked by Dr. H's dedication, but I also felt quite guilty. She should be home. She should be resting and not worrying about me.


Link to Part Two click here

Mama Bear: Kind, comforting and fierce!

For many, many years, my mom has driven me countless hours across vast landscapes of this country to shuttle me to various medical centers to receive medical care. My mom would usually drop me off at the door, and then she would leave. Until a couple years ago, she was still working. So, she would find a business with free wifi and work while I was at appointments.

When I received my trach in May 2017, I had a new obstacle. Not only did I have to propel my wheelchair, I also now had a 12 pound ventilator and a five pound heater/humidifier which I had to gingerly balance on my lap. Self-propelling my wheelchair was nearly impossible. I could not hold my equipment and also use my hands to move the wheels on my wheelchair.

At my very first appointment after my tracheostomy surgery, my mom accompanied me to the appointment. I was a bit frustrated because now I could now longer filter what I relayed to my mom about my appointments. I was very protective of my mom and never wanted her to know all the details about my health. But now, she was going to be privy to all my health information. It took some time to get used to this. I could no longer shield my mom from bad doctor's appointments. And she very quickly discovered how difficult it often was for me to receive good medical care.

As time has progressed, she has gotten used to medical lingo and the process of being in the hospital. She is not afraid to voice her concerns. Sometimes, though, I feel bad for my health care provider.

During one hospitalization, for many days straight, I had been continually kept awake all night. I had just drifted off to sleep when the physician decided to round. As soon as the doctor walked into my room, my mom pounced on the physician. "She just fell asleep! Do not wake her up! She needs to sleep!" My mom chased the doctor out of my room. When my mom returned, I was chuckling. "Mom, you do know that was the doctor." My mom responds, "Oh, really? She can come back later. You need to sleep."

Other times, my mom has been my fierce advocate. When a pulmonologist suggested I did not need a ventilator to breathe, my mom tore apart the physician. "My daughter has respiratory failure. She can't breathe without the ventilator. Of course she needs a vent to breathe!" And my mom continued on a rant for a few minutes. The doctor quickly ended the visit and left. The subject of taking me off my ventilator never came up for the rest of that hospitalization.

As we attend more and more appointments together, my mom often gets frustrated. When I sense an appointment is not going in the direction we had hoped, I will say very little to the medical professional. After the appointment, my mom will often scold me for not speaking up. I respond, "The doctor was set in her ways. I could sense it from the moment she walked in. She had a certain plan which was different from our plan. There was no use fighting. There was no use getting upset and possibly damaging this relationship with the physician. It is best if we just walk away and try again another day." My mom is not usually happy with this response, but in the end, at the next appointment things do go differently, and I get the treatment we had hoped for.

This weekend we celebrate Mother's Day, and I just want to say, "Thanks!" to my mom. It is wonderful to have such a loving, kind, caring and compassionate mom who is not afraid to show her teeth. This day and every day it is a blessing to be her daughter. Love you!

I'll help you with that

Since getting a tracheostomy and being started on invasive ventilation, I have to carry around my ventilator wherever I go. Usually I am burdened in my wheelchair as I struggle to balance a 12 pound ventilator and a five pound heater/humidifier on my lap. Thankfully, I usually have people to help me. Most of the time, people offer to push my wheelchair, which allows me to use my hands to secure the medical equipment on my lap.

Sometimes, though, folks feel inclined to carry my ventilator. This situation almost always makes me laugh. People see me use one hand to lift my ventilator. I carefully wrap my ventilator’s carrying strap several times around my hand and then swing the ventilator on to my lap. People assume, since I am in a wheelchair, I must be very weak and underestimate the strength needed to lift a 12 pound ventilator. When the person attempts to pick up the ventilator with one hand using the carrying strap, almost immediately, the person nearly topples over. "Whoa! That machine is heavy!!!" Then, the person regroups and uses both hands to lift the ventilator.

When we get to my destination, I ask for my ventilator. With one hand, I swing the ventilator into the car or on to a chair. The eyes of the person assisting me grow wide. "That ventilator is HEAVY! How can you lift it with one hand?" I laugh and say I do it all the time. It's not that hard. (To be truthful, my left side of my body is quite weak. Even if I employed my left arm, it would be quite useless in carrying my ventilator. So, if I have to move or carry anything, it is done almost exclusively with my right arm.)

I am always grateful for assistance, but I do not always have the luxury of having people help me. After two years of lifting my ventilator, my right arm muscles have become quite strong, which makes me feel like Super Woman!

Happy 2nd Birthday to me!

On May 3, 2017, I was facing one of the biggest decisions of my life: should I undergo surgery to get a tracheostomy and use a ventilator to breathe? If I did not have the surgery, death was lurking in the shadows. My diaphragm muscles were nearly paralyzed. I was using mostly my accessory muscles to breathe. In addition to using a huge amount of energy to breathe, I was also fighting with all my might to stay conscious. Despite wearing a mask which was connected to a bilevel positive airway pressure (BiPAP) machine which forced air into my lungs, my carbon dioxide levels were dangerously high. It was only a matter of days, perhaps weeks in which high carbon dioxide levels would cause me to lose consciousness and ultimately slip off into eternity.

Although this decision may seem like a no-brainer to most people, for me, it was extremely difficult. I had vowed to myself that after I had my intestinal feeding tube removed in 2013, I would never have another invasive procedure done. Using the BiPAP machine only required me to wear a mask. I could remove the mask at any time and be free from any equipment. Getting a tracheostomy meant even if I disconnected from my ventilator, I would still have a plastic tube in my throat. Moreover, getting a tracheostomy meant that I would be hooked up to a ventilator for the rest of my life...yes, unless God decides to miraculously heals me, I will ALWAYS have to carry around a ventilator.

(Although it has been two years since I started using a ventilator, I still get emotionally choked up when I think about never being able to live my life without the use of a ventilator. Don't get me wrong, I am extremely grateful for technology and the ability to live my life free from the confines of a medical institution thanks to a portable ventilator, but I still emotionally struggle to accept the limitations of having respiratory failure.)

These last two years have been fraught with many challenges. My first tracheotomy tubes I used I was allergic to the materials from which they were made. Also, my first tracheostomy tubes were too long, which caused the end of the tracheostomy tube to dig into my trachea. This caused extreme irritation and damage to my trachea. Moreover, my body reacted to this constant irritation by causing my breathing to be extremely fast. So, despite being on a ventilator, I was constantly short of breath and gasping for air.

Additionally, I have had nine different bacteria take up residence in my respiratory tract. (I acquired my first bacterium when doctors were trying to figure out why my breathing was so fast. And from there, it has been one hospital acquired infection after another hospital acquired infection.) I have had to endure countless days in the hospital and have had endless tests and procedures done in an attempt to rid me of my bacterial infections. I have had two peripherally inserted central catheters (PICC lines) which allowed me to administer intravenous antibiotics at home. I had an anaphylactic reaction to one of the antibiotics. Other antibiotics caused other side effects such as Red Man Syndrome and dystonia attacks.

Despite all these challenges, I am grateful to God for guiding me through all these trials. He has over and over again allowed me to see His goodness, His mercies and His love in the midst of much chaos and loneliness. Although making the decision to get a tracheostomy was one of the hardest decisions of my life, I am grateful God has allowed me to live another two years. So with that, Happy 2nd Birthday to me! Praise be to God. Amen. Amen.