As I scroll through Facebook, I know I will see post after post about the great shock and sadness it is that a man came into a synagogue and heinously shot and killed so many innocent people. I scroll. Nothing. I scroll some more. Nothing. Finally, I see a post from a Jewish friend expressing the great sorrow and hatred of this act. One post. That’s it. As time has progressed, a few more of my Jewish friends have posted a picture frame around their Facebook profile photo stating they are standing against antisemitism. I think to myself, “Where is the outrage? Where are the doleful posts lamenting this incredible act of evil?” My Facebook feed remains silent.
As I was pondering today why there is little outcry about this act of terrorism, I realize the answer is simple—it was commited against God’s chosen people. No one cares much if a bunch of Jews are shot while in the midst of observing God’s holy day. No one much cares about the growing hatred toward the children of Israel. We have grown apathetic. Has the Holocaust made us blind to the growing number of ethnic crimes against the Jews? Are our hearts hardened? Do we just think, “Well, it’s just a few more Jews killed. What does that bring the number to? Over 6 million?”
As God works all things, today some friends of mine are visiting Dachau concentration camp in Germany. Vivid images swirl through my head as I recall to mind this place of intense evil I visited so many years ago. Despite being a beautiful day, a dark coldness lingered in the air. I wondered how many people died here. I wondered how anyone could forget the wicked astrocities which were committed here.
As time distances us from the Holocaust, our memories fade; our emotions wane. We are told to never forget the Holocaust. Despite the efforts by many around the world, our hearts have grown cold. We have become a nation more interested in what we will be wearing for Halloween than for the growing hatred and hostility toward our friends and neighbors. My soul grieves. The next Holocaust is but a heart beat away. Will anyone care?
I lift my hands and heart toward heaven. “Oh LORD. I pray for Your people. I pray for Israel. Please comfort those involved in this horrific act of violence. Please never forget Your people. How blessed are those who trust in You. Baruch atah Adonai Eloheinu melech ha’olam (Blessed are You, Lord our God, King of the universe). Amen.”
Tuesday, October 30, 2018
Thursday, October 25, 2018
Part Three: Blessing upon blessing
As I approach the emergency department (ED) check-in counter, the cold hospital air causes me to be seized with a non-stop coughing spell. Immediately, the triage nurse hears my coughs and gasps. Her face instantly shows great concern and panic for my situation. The nurse hurries the current patient through triage. She then quickly summons me back to her station, which is located behind the check-in desk.
As my mom wheels me to the triage area, my dear friend, Bonnie, an ED respiratory therapist who has taken care of me several times, happens to be walking to the triage area. In an instant, she recognizes me. She tells the triage nurse she is taking me back to room number 4 in the trauma center. (For what it is worth, this emergency department is HUGE! There are numerous areas for different levels of care. The trauma center is the highest level of care and has the fastest treatment times.) When I hear Bonnie wants to take me to the trauma center, I nearly start crying. I know I will get medical care extremely fast. ("Thank You Lord, for all these blessings!”)
When we arrive in the trauma center, I again almost cry. I am given an actual room with walls and a door, which is located at the end of the hall. Despite the roaring noise of the trauma center, the room is quiet. As soon as I am rolled into the room, several nurses appear. They assist me into the bed. Then, I have a nurse on each arm inserting an IV. They quickly draw blood for blood cultures and blood tests. As soon as they are finished, a physician walks into the room. She reads the list of symptoms I have typed up on my iPad. She orders IV fluids, IV antibiotics and an X-ray. Shortly after the doctor leaves, a nurse returns to my room. She pushes 2 grams of Cefepime through my IV and hooks up two bags of IV fluids--one bag for each arm. The radiology technician appears only a few minutes later. He quickly takes a picture of my lungs and disappears.
I have a roommate who needs to leave the room to be taken to CT. When she leaves, I hear my physician tell the nurse wheeling my roommate out the door, "When you come back, go to room 6. This is going to be an isolation room." I think to myself, "Hooray! Something must be wrong with me. But surely, an isolation room!? That cannot be correct. I must have misheard the doctor."
A few minutes after my roommate leaves, a nurse posts a sign on my door and closes the doors to my room. My ventilator makes its usual racket, but the noise from the trauma center vanishes. Calm fills the room. My body instantly falls into a relaxed state. I curl up beneath a pile of blankets and rest my head on the bed railing. I soon fall asleep.
Three and a half hours after arriving at the ED, I am given a bed in the medical intensive care unit (MICU). (This truly is a miracle! I usually have to wait 8-24 hours for a bed at this medical facility.) I am overjoyed when I find out I am going to this unit as it has the best nurses and doctors in the entire hospital. If I have to be hospitalized, there is no place I would rather be than at this medical center and in the MICU. I again send up praises and thanks to God for His continued blessings.
When I arrive in the MICU, I am thrilled to see my room is located at the end of the hallway away from the busy and noisy nurses' stations. Additionally, my room is almost twice the size of the regular MICU rooms. (Most of the MICU rooms are just large enough to squeeze in a bed, a chair and a tiny sink. My room, however, has room for two beds! Yes, I got the deluxe suite on this visit!) Moreover, because my room is an isolation room, the sliding door has to be kept closed at all times. This means that the nurses, doctors and medical staff are religious in making sure they close the door when exiting my room. Furthermore, my room is equipped with an air scrubber. The machine cleanses the air to prevent any air-borne bacteria from spreading to other parts of the hospital. Although the contraption is loud, it blocks out all the hallway noise. Oh, how I love peace and quiet! (Thank You Lord!!!)
Before I drift off to sleep for the night, a physician visits me. He informs me that my pulmonologist has filled him in on my medical case. (I am overwhelmed with this news. How wonderful it is to have a doctor know some of my medical background! This information helps tremendously in guiding my treatment plan.)
As my eyelids grow heavy, I cannot help but think about the day. Despite being gravely ill, every place I turned, God showered upon me blessing upon blessing. When I was in such dire straights, God moved mountain after mountain to ensure I got the urgent medical care I so desperately needed. Praises and words of thanksgiving continually spill forth from my lips as my body tugs me into dream world. God's comfort and love surround me as I slip into sleep. How awesome is the God we serve!
“They that trust in the LORD shall be as Mount Zion which cannot be moved, but abides forever. As the mountains are round about Jerusalem, so the LORD is round about His people, from this time forth forever more.” (Psalm 125:1-2)
(Link to Part One click here)
As my mom wheels me to the triage area, my dear friend, Bonnie, an ED respiratory therapist who has taken care of me several times, happens to be walking to the triage area. In an instant, she recognizes me. She tells the triage nurse she is taking me back to room number 4 in the trauma center. (For what it is worth, this emergency department is HUGE! There are numerous areas for different levels of care. The trauma center is the highest level of care and has the fastest treatment times.) When I hear Bonnie wants to take me to the trauma center, I nearly start crying. I know I will get medical care extremely fast. ("Thank You Lord, for all these blessings!”)
When we arrive in the trauma center, I again almost cry. I am given an actual room with walls and a door, which is located at the end of the hall. Despite the roaring noise of the trauma center, the room is quiet. As soon as I am rolled into the room, several nurses appear. They assist me into the bed. Then, I have a nurse on each arm inserting an IV. They quickly draw blood for blood cultures and blood tests. As soon as they are finished, a physician walks into the room. She reads the list of symptoms I have typed up on my iPad. She orders IV fluids, IV antibiotics and an X-ray. Shortly after the doctor leaves, a nurse returns to my room. She pushes 2 grams of Cefepime through my IV and hooks up two bags of IV fluids--one bag for each arm. The radiology technician appears only a few minutes later. He quickly takes a picture of my lungs and disappears.
I have a roommate who needs to leave the room to be taken to CT. When she leaves, I hear my physician tell the nurse wheeling my roommate out the door, "When you come back, go to room 6. This is going to be an isolation room." I think to myself, "Hooray! Something must be wrong with me. But surely, an isolation room!? That cannot be correct. I must have misheard the doctor."
A few minutes after my roommate leaves, a nurse posts a sign on my door and closes the doors to my room. My ventilator makes its usual racket, but the noise from the trauma center vanishes. Calm fills the room. My body instantly falls into a relaxed state. I curl up beneath a pile of blankets and rest my head on the bed railing. I soon fall asleep.
Three and a half hours after arriving at the ED, I am given a bed in the medical intensive care unit (MICU). (This truly is a miracle! I usually have to wait 8-24 hours for a bed at this medical facility.) I am overjoyed when I find out I am going to this unit as it has the best nurses and doctors in the entire hospital. If I have to be hospitalized, there is no place I would rather be than at this medical center and in the MICU. I again send up praises and thanks to God for His continued blessings.
When I arrive in the MICU, I am thrilled to see my room is located at the end of the hallway away from the busy and noisy nurses' stations. Additionally, my room is almost twice the size of the regular MICU rooms. (Most of the MICU rooms are just large enough to squeeze in a bed, a chair and a tiny sink. My room, however, has room for two beds! Yes, I got the deluxe suite on this visit!) Moreover, because my room is an isolation room, the sliding door has to be kept closed at all times. This means that the nurses, doctors and medical staff are religious in making sure they close the door when exiting my room. Furthermore, my room is equipped with an air scrubber. The machine cleanses the air to prevent any air-borne bacteria from spreading to other parts of the hospital. Although the contraption is loud, it blocks out all the hallway noise. Oh, how I love peace and quiet! (Thank You Lord!!!)
Before I drift off to sleep for the night, a physician visits me. He informs me that my pulmonologist has filled him in on my medical case. (I am overwhelmed with this news. How wonderful it is to have a doctor know some of my medical background! This information helps tremendously in guiding my treatment plan.)
As my eyelids grow heavy, I cannot help but think about the day. Despite being gravely ill, every place I turned, God showered upon me blessing upon blessing. When I was in such dire straights, God moved mountain after mountain to ensure I got the urgent medical care I so desperately needed. Praises and words of thanksgiving continually spill forth from my lips as my body tugs me into dream world. God's comfort and love surround me as I slip into sleep. How awesome is the God we serve!
“They that trust in the LORD shall be as Mount Zion which cannot be moved, but abides forever. As the mountains are round about Jerusalem, so the LORD is round about His people, from this time forth forever more.” (Psalm 125:1-2)
(Link to Part One click here)
Tuesday, October 23, 2018
Part Two: When the sun rises
The sun finally rises. I decide to use all my energy to get out of bed. I need to pack. I make my way to the kitchen. I am overwhelmed with joy when I see my father sleeping on the couch. I know he will wake up when I make some noise. I am still ambivalent if I should seek medical care. I tell myself, "I will take my temperature. If I am running a fever, I will go to the emergency department." I find a thermometer on my night stand. I take my temperature. It reads 101.8 degrees. I reluctantly make a final decision. I am going to the emergency department.
I slowly gather up some of my belongings. Moving very sluggishly, I immediately am overwhelmed with fatigue. I think I might collapse from sheer exhaustion. I push through the fatigue. I return to the kitchen and start making some noise. My father wakes up. I use all my strength to speak. "I feel very ill. I need to go to the emergency department." My father immediately wakes up. He bolts off the couch and heads for his bedroom. I can hear him wake up my mom. Very soon, my parents are running around the house, trying to pack and load the car as quickly as possible.
I continue to collect my belongings. I am so weak, I am shaking. I collapse a few times. My head is spinning. Nothing makes sense. I wonder if I will have the strength to make the 400 mile journey to the medical center. My mom immediately tells me not to move. She tries to finish packing for me. After resting a while, I finally have the strength to head for the car and collapse into the backseat.
The journey to the medical center is quite hazy. I constantly am in and out of slumber land. I am often surprised how much time passed between my bouts of consciousness. Thankfully, traffic is very light during our travels; my father makes record time getting to the emergency department. About 90 minutes from the hospital, my right shoulder explodes in pain. I attempt to get comfortable, but nothing helps relieve the incredible pain pulsating in my shoulder. When we are 45 minutes from the medical center, I receive an email from my pulmonologist. She gives instructions on what I should do when I arrive at the emergency department.
At 3 p.m., we arrive at the emergency department entrance. As I cross the threshold of the building, I am overwhelmed with the number of people waiting. My heart sinks. I am so sick. I do not think I have the strength to wait several hours for medical treatment. I send up a prayer to God. "Thank You for Your abundant blessings. Thank You that You gave me the ability to endure the long car ride. But, Lord, look at all these people. Please help me get medical treatment fast. Please continue to shower upon me Your loving kindnesses. Amen."
(Link to Part Three click here)
I slowly gather up some of my belongings. Moving very sluggishly, I immediately am overwhelmed with fatigue. I think I might collapse from sheer exhaustion. I push through the fatigue. I return to the kitchen and start making some noise. My father wakes up. I use all my strength to speak. "I feel very ill. I need to go to the emergency department." My father immediately wakes up. He bolts off the couch and heads for his bedroom. I can hear him wake up my mom. Very soon, my parents are running around the house, trying to pack and load the car as quickly as possible.
I continue to collect my belongings. I am so weak, I am shaking. I collapse a few times. My head is spinning. Nothing makes sense. I wonder if I will have the strength to make the 400 mile journey to the medical center. My mom immediately tells me not to move. She tries to finish packing for me. After resting a while, I finally have the strength to head for the car and collapse into the backseat.
The journey to the medical center is quite hazy. I constantly am in and out of slumber land. I am often surprised how much time passed between my bouts of consciousness. Thankfully, traffic is very light during our travels; my father makes record time getting to the emergency department. About 90 minutes from the hospital, my right shoulder explodes in pain. I attempt to get comfortable, but nothing helps relieve the incredible pain pulsating in my shoulder. When we are 45 minutes from the medical center, I receive an email from my pulmonologist. She gives instructions on what I should do when I arrive at the emergency department.
At 3 p.m., we arrive at the emergency department entrance. As I cross the threshold of the building, I am overwhelmed with the number of people waiting. My heart sinks. I am so sick. I do not think I have the strength to wait several hours for medical treatment. I send up a prayer to God. "Thank You for Your abundant blessings. Thank You that You gave me the ability to endure the long car ride. But, Lord, look at all these people. Please help me get medical treatment fast. Please continue to shower upon me Your loving kindnesses. Amen."
(Link to Part Three click here)
Thursday, October 18, 2018
Part One: Waiting for the sun to rise
It is 11 p.m. I lie down to sleep. I am exhausted. I just spent three days and two sleepless nights in the hospital. I yearn to fall into a heavy sleep and not wake up until the sun has circled the earth back to the western horizon. I lie down. I am cold, so cold. My body is shaking. I try to curl up beneath my blanket, but I cannot get warm. I remember in the hallway closet I have a thick down-filled winter parka. I sluggishly make my way to the hallway closet. I feel so sick. I snatch up the bulky jacket and grab a wool winter cap. I place the hat on my head and zip up the coat. I return to my bed, but I cannot get warm. Very soon, I notice my body is frightfully hot, but I am shaking from being ice cold. I am shaking so violently; my chest explodes with pain.
I try to sleep, but how can one sleep when shaking uncontrollably? As time passes, I become more and more ill. I have excruciating abdominal pain. I am very nauseas and think I might throw up. I am too weak to move. My body writhes in pain. Every joint and muscle aches. My head screams in agony, and pain shoots down my neck. Confusion is starting to overwhelm me. I think to myself, “I have not been this sick since the time I developed sepsis. I wonder if the pseudomonas infection brewing in my lungs has decided to invade my blood. I really hope this is all being caused by pseudomonas. I really hope I did not acquire another bug during my recent hospitalization.”
I fight through the night. High fever and shaking chills prevent me from sleeping. I begin to wonder if my symptoms will ever subside. I begin thinking I perhaps should seek medical attention in the morning. I begin pondering if I should contact my pulmonologist. I start drafting an email in my head. Around 4:30 a.m., my fever drops enough to allow me to move. I start writing an email to my physician on my iPad. I decide not to send the email. I think, “What if I start feeling better? I don’t want to bother a medical professional if I don’t have to.” I decided to wait until 6 a.m. “Yes, if at 6 a.m. I am still not feeling well, I will send my doctor the email.” I wait and wait. At 6 a.m., I am still very ill. I reluctantly hit the send button on the email. I feel like such a fool for contacting my doctor, but I know she can help guide my medical case. And now that I have hit the “send” button, I am forcing myself to seek medical attention as I told my doctor I would be coming to her medical facility as soon as my parents wake up.
I look desperately to the eastern sky. “Oh sun, where are you? Please rise soon. God, please wake my parents up. I am so sick. I need to get to the emergency department, the emergency department which is 400 miles away. Please give me the strength to make the trip. Please hurry up the morning. I cannot wait. I am so sick. Please, Lord, rise up the sun soon.”
(Link to Part Two click here)
I try to sleep, but how can one sleep when shaking uncontrollably? As time passes, I become more and more ill. I have excruciating abdominal pain. I am very nauseas and think I might throw up. I am too weak to move. My body writhes in pain. Every joint and muscle aches. My head screams in agony, and pain shoots down my neck. Confusion is starting to overwhelm me. I think to myself, “I have not been this sick since the time I developed sepsis. I wonder if the pseudomonas infection brewing in my lungs has decided to invade my blood. I really hope this is all being caused by pseudomonas. I really hope I did not acquire another bug during my recent hospitalization.”
I fight through the night. High fever and shaking chills prevent me from sleeping. I begin to wonder if my symptoms will ever subside. I begin thinking I perhaps should seek medical attention in the morning. I begin pondering if I should contact my pulmonologist. I start drafting an email in my head. Around 4:30 a.m., my fever drops enough to allow me to move. I start writing an email to my physician on my iPad. I decide not to send the email. I think, “What if I start feeling better? I don’t want to bother a medical professional if I don’t have to.” I decided to wait until 6 a.m. “Yes, if at 6 a.m. I am still not feeling well, I will send my doctor the email.” I wait and wait. At 6 a.m., I am still very ill. I reluctantly hit the send button on the email. I feel like such a fool for contacting my doctor, but I know she can help guide my medical case. And now that I have hit the “send” button, I am forcing myself to seek medical attention as I told my doctor I would be coming to her medical facility as soon as my parents wake up.
I look desperately to the eastern sky. “Oh sun, where are you? Please rise soon. God, please wake my parents up. I am so sick. I need to get to the emergency department, the emergency department which is 400 miles away. Please give me the strength to make the trip. Please hurry up the morning. I cannot wait. I am so sick. Please, Lord, rise up the sun soon.”
(Link to Part Two click here)
Tuesday, October 16, 2018
Roller coaster ride
As I am lying down, lazily reading the Bible, I decide to take a break and check my emails. I see an email notification that there is an important update from one of the medical clinics I visit. I recently have changed some of my appointments and think this must be a notification informing me of a change I made to one of my appointments. I decide to login to my patient account to investigate the notification.
Upon entering the site, I cannot discern that any changes have been made. The appointments I cancelled are still cancelled, and the appointments I had made are still scheduled. I then notice an appointment I have with my pulmonologist in two weeks is missing from my “upcoming appointments” list. I think this is odd. I then check my cancelled appointments log. To my shock, my pulmonology appointment is listed as cancelled. “Oh no! How can this be! Is my pulmonologist mad at me!? Why is my appointment cancelled?” I nearly break out in tears. I have not been feeling well. I had resolved earlier in the day to use every last ounce of energy to make it two weeks to my pulmonology appointment to seek medical care. I was not going to go back to the hospital or emergency department no matter how terrible I felt. But now, what was I going to do!?
I look at the clock. It was after 6 p.m. I could not call the clinic. They were closed. But, oh, I must find out immediately why my appointment is cancelled. I do have my pulmonologist’s email address. Do I dare email her? Will she answer the email so late in the day? I decide I have nothing lose and email my pulmonologist. As I wait for a response, I decide to go back to reading Scripture. A half hour passes before I check my emails. To my shock, there is an email response from my pulmonologist. The email states she has a meeting and will be out of town the week of my appointment. I am relieved I have done nothing to cause the appointment to be cancelled, but I again nearly burst into tears. “Oh, I feel so awful. I am so sick. I cannot wait another 2-3 months to reschedule an appointment with my doctor. Oh no. No! This is so heart-breaking! What should I do? What can I do?” I decide not to email my doctor and tell her how sick I am feeling. I remind myself that this is just a test from God. God is in control. He knows my needs. He will direct my path if I just allow Him to.
Two hours later, I am in the midst of administering my IV antibiotics when the telephone rings. I think, “This is odd for someone to be calling at 8:45 at night. I wonder who it could be?” The man on the phone informs me he works for my doctor. “Your doctor had a change in her schedule and has to cancel her appointment with you in two weeks. But I am to offer you an appointment for next week.” I sit a bit dumb-founded and say, “This next week as in seven days from now!? Well, yes, of course. I will take the appointment.” I am in disbelief. I won’t have to wait 8-12 weeks to see my physician! I only have to wait seven days. Yes! SEVEN DAYS!!! I want to scream and shout and dance with delight. “Oh LORD, LORD!!! I can’t believe it! I am so sick. I have been lamenting all day I did not think I had the strength to endure two more weeks of being so sick. And now, I only have to wait one week! Yes, ONE WEEK to see my doctor!!! Oh how You so quickly turn my sorrow into joy! How quickly You have heard and answered my prayers. I just might have the energy and stamina to remain out of the hospital until my appointment with my pulmonologist. Thank You! Thank You! In Jesus’ name. Amen!”
Thursday, October 11, 2018
Praying my way through pain
It’s another night. It’s another night in the hospital. It’s another night in the hospital with a pancreatitis attack. Earlier in the day, I underwent a procedure in which a scope was placed down my throat, through my stomach and into my small intestine. A small probe was inserted up into my pancreas. Dye was injected and X-ray imaging was used to visualize my pancreas.
Almost as soon as I am awake from the general anesthesia, I am shaking in pain. I am thankful a nurse is by my side to monitor my recovery from the anesthesia. She quickly gets me some pain medication. When the medicine does not work, she calls the doctor for more medicine. The nurse explains how much pain I am in. The doctor decides this is a pancreatitis attack, and I should be admitted to the hospital for pain control. In the meantime, I am allowed 50 mcg of fentanyl every ten minutes. I have never been given or have had access to this much pain medication. Very quickly I am finally free from my pancreatic pain. This is the first time in many months that I do not have pain raging in my abdomen.
When I am transferred upstairs to the floor, I have a “sitter” who stays in my room to monitor my vitals and ventilator. The nurse quickly gets me situated. The pain medicine is starting to wear off. I ask for something for the pain. The nurse explains she has no orders for pain medicine. She leaves my room. The only thing I know to do during times of pain is to try my hardest to read God’s Word. My eyes are filled with tears. I get out my headphones and decide listening to the Bible is a better alternative than trying to read. My sitter asks me what I am listening to. I reply, “The Bible.” The sitter does not say anything, but the shocked expression on her face says it all.
Very soon, I am writhing in agony. I repeatedly beg my nurse for pain medicine. The nurse finally calls the doctor. I am prescribed a one time dose of 25 mcg of fentanyl. Since there is someone in my room, I keep my tracheostomy cuff closed, which prevents the sobs and screams from escaping up my throat and out my mouth. Only when I have to speak (and thus have to open my trach cuff), do I allow myself to give voice to the agony pulsating through my body. My sitter tells me how amazed she is that despite all the pain I am in, I do not scream or curse at my nurse. The sitter’s words bring tears to my eyes; her words are sweet nectar to my soul.
I try hard not to raise my voice at my nurse, but very soon through my shrieking, I am using a raised tone of voice. It takes over two hours for the medicine to be delivered from the pharmacy to my nurse. I am in so much pain by the time the medicine is administered, I do not even feel the drug’s effects. I beg the nurse for more pain medicine. I explain I was given 50 mcg of fentanyl every TEN MINUTES after my procedure. A one time dose of 25 mcg is a very small dose and is ineffective for the pain. The nurse refuses to call the doctor.
I shake in pain for the entire night. Around 6 a.m., the pain starts to subside. When my sitter is getting ready to leave at 7 a.m. for the shift change, she explains to me how she could not believe it took so long to get pain medication. She tells me how sorry she was I had to suffer so much and for so long. She says how she marveled at my ability to endure so much pain for such a long time. She encourages me to continue listening to the Bible.
When she leaves my room, tears stream down my face. Was I able to be a good Christian during this night of excruciating pain? Was God able to use me in this dire circumstance? I thank God for giving me a reduction in my pain. I thank Him for using my pancreatitis attack for His glory. I ask God to continue using me in all circumstances and to allow His light to shine in the midst of so much pain and darkness.
Almost as soon as I am awake from the general anesthesia, I am shaking in pain. I am thankful a nurse is by my side to monitor my recovery from the anesthesia. She quickly gets me some pain medication. When the medicine does not work, she calls the doctor for more medicine. The nurse explains how much pain I am in. The doctor decides this is a pancreatitis attack, and I should be admitted to the hospital for pain control. In the meantime, I am allowed 50 mcg of fentanyl every ten minutes. I have never been given or have had access to this much pain medication. Very quickly I am finally free from my pancreatic pain. This is the first time in many months that I do not have pain raging in my abdomen.
When I am transferred upstairs to the floor, I have a “sitter” who stays in my room to monitor my vitals and ventilator. The nurse quickly gets me situated. The pain medicine is starting to wear off. I ask for something for the pain. The nurse explains she has no orders for pain medicine. She leaves my room. The only thing I know to do during times of pain is to try my hardest to read God’s Word. My eyes are filled with tears. I get out my headphones and decide listening to the Bible is a better alternative than trying to read. My sitter asks me what I am listening to. I reply, “The Bible.” The sitter does not say anything, but the shocked expression on her face says it all.
Very soon, I am writhing in agony. I repeatedly beg my nurse for pain medicine. The nurse finally calls the doctor. I am prescribed a one time dose of 25 mcg of fentanyl. Since there is someone in my room, I keep my tracheostomy cuff closed, which prevents the sobs and screams from escaping up my throat and out my mouth. Only when I have to speak (and thus have to open my trach cuff), do I allow myself to give voice to the agony pulsating through my body. My sitter tells me how amazed she is that despite all the pain I am in, I do not scream or curse at my nurse. The sitter’s words bring tears to my eyes; her words are sweet nectar to my soul.
I try hard not to raise my voice at my nurse, but very soon through my shrieking, I am using a raised tone of voice. It takes over two hours for the medicine to be delivered from the pharmacy to my nurse. I am in so much pain by the time the medicine is administered, I do not even feel the drug’s effects. I beg the nurse for more pain medicine. I explain I was given 50 mcg of fentanyl every TEN MINUTES after my procedure. A one time dose of 25 mcg is a very small dose and is ineffective for the pain. The nurse refuses to call the doctor.
I shake in pain for the entire night. Around 6 a.m., the pain starts to subside. When my sitter is getting ready to leave at 7 a.m. for the shift change, she explains to me how she could not believe it took so long to get pain medication. She tells me how sorry she was I had to suffer so much and for so long. She says how she marveled at my ability to endure so much pain for such a long time. She encourages me to continue listening to the Bible.
When she leaves my room, tears stream down my face. Was I able to be a good Christian during this night of excruciating pain? Was God able to use me in this dire circumstance? I thank God for giving me a reduction in my pain. I thank Him for using my pancreatitis attack for His glory. I ask God to continue using me in all circumstances and to allow His light to shine in the midst of so much pain and darkness.
Tuesday, October 9, 2018
The 5 o'clock hush
As the clock strikes 8 a.m., my pulse quickens a bit. It is Monday morning. After a nice peaceful weekend, the phone lines to most medical facilities are now open. Almost immediately, the phone rings. It is my pharmacy or home health agency or doctor's office calling. I am too tired to take the call. I allow the phone to ring and hope my mom takes a message for me.
Every week day, it is the same routine. All day long there are phone calls from some medical-based company. Sometimes the phone calls are just reminders about upcoming appointments. Other calls bring discouraging news such as prescriptions being denied or medical appointments not being approved because additional information is needed. I then need call doctors' offices or insurance companies and often spend too many minutes on hold. My patience grows thin.
As the day marches forth, I often count down the hours until the clock strikes 5 o'clock. Oh, 5 o'clock! My favorite time of the day! Doctor's offices, insurance companies, durable medical equipment companies, etc., all close at 5 p.m. When the minute hand on my clock clicks passed 5 p.m., I know the phone will no longer ring for the day. I breathe a sign of relief. My "job" for the day is over. I can relax and not have to worry about resolving any urgent medical matters...well, I can relax for the next 15 hours until the next week day starts all over again at 8 a.m.
Every week day, it is the same routine. All day long there are phone calls from some medical-based company. Sometimes the phone calls are just reminders about upcoming appointments. Other calls bring discouraging news such as prescriptions being denied or medical appointments not being approved because additional information is needed. I then need call doctors' offices or insurance companies and often spend too many minutes on hold. My patience grows thin.
As the day marches forth, I often count down the hours until the clock strikes 5 o'clock. Oh, 5 o'clock! My favorite time of the day! Doctor's offices, insurance companies, durable medical equipment companies, etc., all close at 5 p.m. When the minute hand on my clock clicks passed 5 p.m., I know the phone will no longer ring for the day. I breathe a sign of relief. My "job" for the day is over. I can relax and not have to worry about resolving any urgent medical matters...well, I can relax for the next 15 hours until the next week day starts all over again at 8 a.m.
Thursday, October 4, 2018
Who is like You, Adonai
I lie in my bed, and suddenly, I am overcome with tremendous gratitude. I break out into uncontrollable sobs and cannot help but feel enormous love for God. I have just returned home from spending several days in the hospital. Due to extremely slow internet at the medical facility, last week I was not able to watch Shabbat services online. But now that I am home, I am able to listen to last week’s Shabbat service.
As the service proceeds, the beauty of the music and warm familiarity of the program makes me weep with thankfulness for everything God is bestowing upon me at this moment. I relish in the incredible comfort of lying in my own bed. My body melts into the softness of my mattress. I snuggle down closely to my comforter and delight in its warmth. I rejoice for being able to enjoy my room temperature set to the mid-80’s and am not freezing in a cold hospital room. My body is overflowing with appreciation for no longer having monitors hooked up to me and having my arms free from IV lines. What a pleasure it is to be able to move freely and have the ability to lie in any position on my bed without fighting against cords and medical equipment.
The list of things in which I am thankful for goes on and on. I find myself indebted to God for being alive. How wonderful it is to be His servant. How amazing it is to be able to freely worship Him. Despite all my recent hospitalizations, what a blessing it is to love Him, to honor Him and to receive His abundant mercy. Not every day is easy, but with God, every day is a precious gift. Every day is an opportunity to praise and worship the great Creator. “Oh, LORD, thank You for Your protection and guidance. Thank You for allowing me to live this day. Thank You for all Your bountiful blessings. All my love to You! Amen.”
As the service proceeds, the beauty of the music and warm familiarity of the program makes me weep with thankfulness for everything God is bestowing upon me at this moment. I relish in the incredible comfort of lying in my own bed. My body melts into the softness of my mattress. I snuggle down closely to my comforter and delight in its warmth. I rejoice for being able to enjoy my room temperature set to the mid-80’s and am not freezing in a cold hospital room. My body is overflowing with appreciation for no longer having monitors hooked up to me and having my arms free from IV lines. What a pleasure it is to be able to move freely and have the ability to lie in any position on my bed without fighting against cords and medical equipment.
The list of things in which I am thankful for goes on and on. I find myself indebted to God for being alive. How wonderful it is to be His servant. How amazing it is to be able to freely worship Him. Despite all my recent hospitalizations, what a blessing it is to love Him, to honor Him and to receive His abundant mercy. Not every day is easy, but with God, every day is a precious gift. Every day is an opportunity to praise and worship the great Creator. “Oh, LORD, thank You for Your protection and guidance. Thank You for allowing me to live this day. Thank You for all Your bountiful blessings. All my love to You! Amen.”
Tuesday, October 2, 2018
A week in the life with Mito
With all my recent health escapades, I completely forgot to write about Mitochondrial Disease Awareness week. So, although this is a wee bit late, here is what my life with Mito was like during Mitochondrial Disease Awareness week.
On Sunday, I drag myself to church. I have just spent four days in the hospital and was discharged home late in the day on Saturday. After having been hospitalized several times and missing church for nearly a month, I yearn to see my church family. Despite my best efforts, the ordeal is too taxing on my body. I have to leave church early because I am absolutely exhausted. I go to bed for the rest of the day.
Monday I learn that my IV antibiotics will not be delivered to my home. I am devastated. I was discharged home from my recent hospitalization without any antibiotics. Despite having antibiotics prescribed from a previous hospitalization, the infusion center has made my prescription null and void. The sorrow which fills my soul overwhelms me. I need antibiotics. I have a multi-drug resistant strain of pseudomonas. How can I overcome a raging infection without antibiotics? Just when I am about to completely collapse from sorrow, I receive a call from my infectious disease doctor. He was informed my prescription was cancelled. He decides to prescribe a new drug.
Tuesday comes and goes. I spend most of the day in bed too sick and too tired to move.
Wednesday, my new IV antibiotic arrives. A few have hours later, my home health nurse shows up to administer the new drug. She takes my vitals and begins the infusion. Very soon, I develop a severe headache. The world starts spinning. I become extremely dizzy. Confusion sets in. I have to lie down. My breathing is becoming severely labored. It is becoming harder and harder to breathe! My tongue swells up. My throat closes up around my trach tube. The nurse asks if I am feeling ok. I use all my energy to attempt to speak. The nurse discerns I am having an anaphylactic reaction to the drug. She consults the drug protocols for administering epinephrine and Benadryl. Slowly, very slowly, my symptoms subside. An ambulance is called. I am taken to the closest hospital.
I spent the next few hours freezing in an emergency department (ED) cubicle. My mom does not want me treated at this hospital. She sternly tells the ED physician I am not to admitted to the hospital; she is going to drive me nearly 400 miles to the medical center in which I have my team of doctors. Thankfully the clinician complies and allows me to be discharged as soon as I am stabilized.
My mom then drives me through the night to the medical center. Just before 2 o’clock in the morning, we arrive at the hospital’s emergency department. Thankfully, the ED is not busy. I am whisked off to triage and subsequently given a room in the ED. Tests are run.
Just before 6 a.m. on Thursday morning, I am rolled up to my room in the intermediate medical unit. A doctor visits me along with a respiratory therapist and other medical personnel. I am grateful when the clock strikes 6:20. The food service phone line is open. After being awake all night, I am starving. I greedily pick up the phone and order breakfast. The rest of Thursday passes without much fanfare. I see several doctors. I am started back on antibiotics. A sputum specimen is collected. I am told nothing else will happen until the culture results come back from the sputum sample.
Friday and Saturday pass. I am bored. I am annoyed to be back in the hospital. I am terribly tired from lack of sleep. I do my best to observe Shabbat. I am grateful my mom visits me. She brings me treats such as McDonald’s iced tea, yogurt, and soft boiled eggs. She travels to another area of the hospital to fill my styrofoam cup with hot water so I can make hot tea. I am overwhelmed with her kindness and her willingness to bring me delicious food and drink.
Well, this is where my week with Mito ends. I am in the hospital again. I am waiting for culture results. I am waiting to be discharged. For what it is worth, I am subsequently discharged home on Monday. And another week with Mito begins all over again. Although every week is always different, of late, every week seems to include a visit to the ED and/or hospital. This is just what it is like to have Mitochindrial Disease. It seems as hard as I try to separate myself from the medical world, I am never able to disentangle myself from its clutches. I long for and look forward to the day when I am truly free from this disease. What a day that would be!
On Sunday, I drag myself to church. I have just spent four days in the hospital and was discharged home late in the day on Saturday. After having been hospitalized several times and missing church for nearly a month, I yearn to see my church family. Despite my best efforts, the ordeal is too taxing on my body. I have to leave church early because I am absolutely exhausted. I go to bed for the rest of the day.
Monday I learn that my IV antibiotics will not be delivered to my home. I am devastated. I was discharged home from my recent hospitalization without any antibiotics. Despite having antibiotics prescribed from a previous hospitalization, the infusion center has made my prescription null and void. The sorrow which fills my soul overwhelms me. I need antibiotics. I have a multi-drug resistant strain of pseudomonas. How can I overcome a raging infection without antibiotics? Just when I am about to completely collapse from sorrow, I receive a call from my infectious disease doctor. He was informed my prescription was cancelled. He decides to prescribe a new drug.
Tuesday comes and goes. I spend most of the day in bed too sick and too tired to move.
Wednesday, my new IV antibiotic arrives. A few have hours later, my home health nurse shows up to administer the new drug. She takes my vitals and begins the infusion. Very soon, I develop a severe headache. The world starts spinning. I become extremely dizzy. Confusion sets in. I have to lie down. My breathing is becoming severely labored. It is becoming harder and harder to breathe! My tongue swells up. My throat closes up around my trach tube. The nurse asks if I am feeling ok. I use all my energy to attempt to speak. The nurse discerns I am having an anaphylactic reaction to the drug. She consults the drug protocols for administering epinephrine and Benadryl. Slowly, very slowly, my symptoms subside. An ambulance is called. I am taken to the closest hospital.
I spent the next few hours freezing in an emergency department (ED) cubicle. My mom does not want me treated at this hospital. She sternly tells the ED physician I am not to admitted to the hospital; she is going to drive me nearly 400 miles to the medical center in which I have my team of doctors. Thankfully the clinician complies and allows me to be discharged as soon as I am stabilized.
My mom then drives me through the night to the medical center. Just before 2 o’clock in the morning, we arrive at the hospital’s emergency department. Thankfully, the ED is not busy. I am whisked off to triage and subsequently given a room in the ED. Tests are run.
Just before 6 a.m. on Thursday morning, I am rolled up to my room in the intermediate medical unit. A doctor visits me along with a respiratory therapist and other medical personnel. I am grateful when the clock strikes 6:20. The food service phone line is open. After being awake all night, I am starving. I greedily pick up the phone and order breakfast. The rest of Thursday passes without much fanfare. I see several doctors. I am started back on antibiotics. A sputum specimen is collected. I am told nothing else will happen until the culture results come back from the sputum sample.
Friday and Saturday pass. I am bored. I am annoyed to be back in the hospital. I am terribly tired from lack of sleep. I do my best to observe Shabbat. I am grateful my mom visits me. She brings me treats such as McDonald’s iced tea, yogurt, and soft boiled eggs. She travels to another area of the hospital to fill my styrofoam cup with hot water so I can make hot tea. I am overwhelmed with her kindness and her willingness to bring me delicious food and drink.
Well, this is where my week with Mito ends. I am in the hospital again. I am waiting for culture results. I am waiting to be discharged. For what it is worth, I am subsequently discharged home on Monday. And another week with Mito begins all over again. Although every week is always different, of late, every week seems to include a visit to the ED and/or hospital. This is just what it is like to have Mitochindrial Disease. It seems as hard as I try to separate myself from the medical world, I am never able to disentangle myself from its clutches. I long for and look forward to the day when I am truly free from this disease. What a day that would be!
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