In 2016, it was a year of much change. My health started taking a fast nose-dive. I could no longer use the energy needed to maintain friendships. I was finding it harder and harder to attend church services and Bible studies. Things which were once simple for me were becoming nearly impossible.
In this midst of this turmoil, I learned my very dear friend, Milly, passed away from respiratory failure, a complication of her Mitochondrial Disease. Her death struck me deep inside. I have known many people who have died from Mitochondrial Disease, but none of them were my close friend. Milly lived her life as best she could. She posted YouTube videos almost weekly for several years. Upon her passing, being able to view her YouTube videos was a tremendous comfort to her family and me.
Two years ago, as I was sorting through my new health symptoms and trying to cope with Milly's death, I decided to leave a legacy behind for my family and friends. I am not technologically inclined and making videos is not my cup of tea. However, I have always had a fondness for writing. I thought I perhaps could write a few blog posts as a way for those who love me to be comforted when God brings me Home.
What I could not imagine upon starting this blog was that it was at such a pivotal point in my Mitochondrial Disease. Three weeks after creating this blog, I developed significant issues breathing. As the months rolled by, I was fighting with all my might to breathe. No one, not even my doctors, seemed to have recognized that I was in respiratory failure. As with all things, God perfectly timed the start of my blog with a new chapter in my life--my battle to breathe.
This blog has grown to be so much more than black words typed on a white page. It has become a refuge for me. When things go well or adventures go awry, there is great comfort being able to write. Oddly, as I write, my perception often changes. God often allows me to see Him at work...to see Him working all things for good. This blog has greatly changed my relationship with God. I no longer see Him as a figure far away in the clouds. Rather, I see Him every day and almost every moment working by my side to mold me and shape me into the person He wants me to become.
To everyone who reads the random thoughts in my brain which God transpires into logical subject matter, thank you! Thank you for coming along for the journey for the past two years. Thank you for your love and encouragement. I wish I could say these next two years will be filled with my recovery and returning back to normal life. However, I know this will probably not be the case. I have many critical decisions to make regarding my health. I pray God will continue to lead me and guide my medical team in the way we should go. I pray that God's love and peace completely overflows your cup. May God richly bless your life!
Tuesday, July 31, 2018
Thursday, July 26, 2018
Blessed is the man who is having trials
As another day passes in which I am frustrated and exhausted from dealing with the medical community, I try as hard as I can to not let the tears flow down my cheeks. I am so worn down; my patience is growing thin. I feel as though I have been fighting a never ending battle. First, in June of 2017, I was fighting to get a tracheostomy tube to which I was not allergic. Then in July 2017, I acquire my first respiratory tract bacterial infection while hospitalized. From there, I have never been given the correct antibiotics and now have five (hospital-acquired) bacterial infections.
Then in December 2017, my chronic pancreatitis exploded into severe daily pain. In March, I started having frequent pancreatitis attacks. Despite trying over and over again to get pain medication, I never have succeed. While hospitalized, I often am given nothing or very weak pain meds. Now, I no longer go to the hospital when I have a pancreatitis attack. I can writhe and scream in pain for hours on end more comfortably in my own bed than I can in a hospital where I know I am surround by pain medication (and yet none is usually given to me).
Of late, I have undergone tests and procedures which in addition to leaving me severely exhausted, have caused increased illness. I try to be obedient to clinicians’ demands, but no one seems to understand how much energy is wasted enduring and recovering from procedures and tests. With each test, I feel as though a few more of the days of my life have been cut short.
When I arrive at doctors’ appointments, I often still have wet hair from the shower and have my backpack filled with essentials needed for a hospital stay. So many of my doctors’ appointments have turned into emergency department visits and subsequently, hospitalizations. I usually schedule my doctors’ appointments early in the afternoon because I know if I am transferred to the emergency department, they are not very busy during this time.
I feel like the solutions to many of my medical ailments are so simple. Give me a long course of the correct antibiotics to fight off the bacterial infections. Prescribe fentanyl patches to help fight off the pain raging in my pancreas.
As much as I feel so broken, I have learned through studying the book of James that God gives trials to those faithful in Him. With each test, we either pass or fail. If we fail, we endure the same challenges over and over again until we succeed. Once we pass the exam, God gives us new obstacles to overcome which are harder and more rigorous than our previous ones. So, as my life with Mitochondrial Disease becomes harder and harder to endure, I try to rejoice knowing I must have passed my previous trials. I pray that God will allow me relief from my symptoms. But I know great rewards lie ahead to those who endure to the end. So with eternity in view, I dry up my tears and continue forth knowing whatever challenges lie ahead, God is there; God is watching; God is judging if I pass or fail. “Blessed is the man that is having trials for when he is tried, he shall receive the crown of life, which the Lord has promised to them that love Him” (James 1:12).
Then in December 2017, my chronic pancreatitis exploded into severe daily pain. In March, I started having frequent pancreatitis attacks. Despite trying over and over again to get pain medication, I never have succeed. While hospitalized, I often am given nothing or very weak pain meds. Now, I no longer go to the hospital when I have a pancreatitis attack. I can writhe and scream in pain for hours on end more comfortably in my own bed than I can in a hospital where I know I am surround by pain medication (and yet none is usually given to me).
Of late, I have undergone tests and procedures which in addition to leaving me severely exhausted, have caused increased illness. I try to be obedient to clinicians’ demands, but no one seems to understand how much energy is wasted enduring and recovering from procedures and tests. With each test, I feel as though a few more of the days of my life have been cut short.
When I arrive at doctors’ appointments, I often still have wet hair from the shower and have my backpack filled with essentials needed for a hospital stay. So many of my doctors’ appointments have turned into emergency department visits and subsequently, hospitalizations. I usually schedule my doctors’ appointments early in the afternoon because I know if I am transferred to the emergency department, they are not very busy during this time.
I feel like the solutions to many of my medical ailments are so simple. Give me a long course of the correct antibiotics to fight off the bacterial infections. Prescribe fentanyl patches to help fight off the pain raging in my pancreas.
As much as I feel so broken, I have learned through studying the book of James that God gives trials to those faithful in Him. With each test, we either pass or fail. If we fail, we endure the same challenges over and over again until we succeed. Once we pass the exam, God gives us new obstacles to overcome which are harder and more rigorous than our previous ones. So, as my life with Mitochondrial Disease becomes harder and harder to endure, I try to rejoice knowing I must have passed my previous trials. I pray that God will allow me relief from my symptoms. But I know great rewards lie ahead to those who endure to the end. So with eternity in view, I dry up my tears and continue forth knowing whatever challenges lie ahead, God is there; God is watching; God is judging if I pass or fail. “Blessed is the man that is having trials for when he is tried, he shall receive the crown of life, which the Lord has promised to them that love Him” (James 1:12).
Tuesday, July 24, 2018
And just like that, God moves another mountain
Recently, I had a procedure done (ERCP) to look at my pancreas. Since the procedure, I have been extremely ill. I have been able to eat little and am in constant pain. My weight continues to drop to scary new lows. After the procedure, I was admitted to the hospital for pain control. Unfortunately, upon discharge, I was given no follow-up instructions. I decided to call the clinic and make a follow-up appointment to see my GI doctor. The appointment I was able to book was more than two months away. At the rate I am losing weight (2 pounds a week), I was fairly certain I would be in very bad shape (or dead) from malnutrition by my follow-up appointment.
At church this weekend, my dear friend Michelle spoke with me about my medical issues. She encouraged me to call the doctor’s office and explain my pain situation. Nearly a year ago, Michelle’s advice saved the day when she encouraged me to contact my pulmonologist. So, I decided this was God speaking and telling me what I should do.
On Monday morning, I called the doctor’s office. I was directed to an answering machine which told me to leave my contact info and a brief message. I left my information and hung up. Several hours later, my doctor’s nurse called me back. I explained my pain situation. She gave me some suggestions, but ultimately told me if the pain was severe to go to my local hospital. I then asked about following up with the doctor. I mentioned I lived 400 miles away from the medical facility. I also mentioned in a few weeks, I would be coming to the area for other medical appointments. The nurse asked when my appointments were. She then said, “Can you come in at 9:30 before your other appointments?” In complete disbelief, I replied, “YES!” And just like that. God moved another massive mountain. In a moment, in a heartbeat, God is allowing me to see my GI doctor faster than what I was able to do on my own. Thanks be to God, and thanks be to Michelle!
At church this weekend, my dear friend Michelle spoke with me about my medical issues. She encouraged me to call the doctor’s office and explain my pain situation. Nearly a year ago, Michelle’s advice saved the day when she encouraged me to contact my pulmonologist. So, I decided this was God speaking and telling me what I should do.
On Monday morning, I called the doctor’s office. I was directed to an answering machine which told me to leave my contact info and a brief message. I left my information and hung up. Several hours later, my doctor’s nurse called me back. I explained my pain situation. She gave me some suggestions, but ultimately told me if the pain was severe to go to my local hospital. I then asked about following up with the doctor. I mentioned I lived 400 miles away from the medical facility. I also mentioned in a few weeks, I would be coming to the area for other medical appointments. The nurse asked when my appointments were. She then said, “Can you come in at 9:30 before your other appointments?” In complete disbelief, I replied, “YES!” And just like that. God moved another massive mountain. In a moment, in a heartbeat, God is allowing me to see my GI doctor faster than what I was able to do on my own. Thanks be to God, and thanks be to Michelle!
Thursday, July 19, 2018
Rejoicing for the lost patch
These last few months have been a whirlwind of hospitalizations, doctors’ apppointments and tests and procedures. My body longs to curl up in a ball and sleep for a few weeks. However, as much as I want to sit and do nothing, I know I have work to do...God’s work.
Despite my chaotic schedule, I am determined to continually publish and teach a Bible study every week. This can be quite a challenge on a regular week, but add in time away from home, the task of writing a Bible study often falls to the wayside. For this reason, whenever I have an extra moment to spare, I try my hardest to get ahead in writing Bible studies.
At the beginning of this week, I was feeling intense pressure. My Bible study materials were almost depleted, and the time I have to write more studies in the weeks to come is going to be extremely limited. I frantically pick up my computer to study and write another Bible study. One issue that greatly inhibits my ability to write is my double vision. I need to wear an eye patch when looking at a computer screen for any length of time. With all my trips away from home, I had forgotten where I had last placed the eye patch. I search and search, but I can not find in. Finally, I decide to forgo the eye patch and just try as hard as possible to use my weak eye muscles to keep one eye closed. Very soon I develope a bad headache and have to quit working.
All this week, I have continued searching for the eye patch, but my efforts have proven fruitless. Finally, this morning, I decided to just order another eye patch from eBay. I was very disheartened when I discovered it would take about ten days to get a new eye patch. I really need to work on my Bible study. Waiting for the eye patch to be delivered would not do. I have been praying and praying for God to help me find the eye patch, but I never seemed to have gotten an answer. Right before I was about to place my order on eBay, I suddenly felt a strong urge to pull back the comforter on my bed. As I did this task, there was my eye patch hidden between the comforter and the sheets! I shriek in celebration. “Oh LORD! Oh LORD! I can now continue doing your work! I can get my Bible study written and not fall behind! Oh how compassionate and merciful you are!”
Despite my chaotic schedule, I am determined to continually publish and teach a Bible study every week. This can be quite a challenge on a regular week, but add in time away from home, the task of writing a Bible study often falls to the wayside. For this reason, whenever I have an extra moment to spare, I try my hardest to get ahead in writing Bible studies.
At the beginning of this week, I was feeling intense pressure. My Bible study materials were almost depleted, and the time I have to write more studies in the weeks to come is going to be extremely limited. I frantically pick up my computer to study and write another Bible study. One issue that greatly inhibits my ability to write is my double vision. I need to wear an eye patch when looking at a computer screen for any length of time. With all my trips away from home, I had forgotten where I had last placed the eye patch. I search and search, but I can not find in. Finally, I decide to forgo the eye patch and just try as hard as possible to use my weak eye muscles to keep one eye closed. Very soon I develope a bad headache and have to quit working.
All this week, I have continued searching for the eye patch, but my efforts have proven fruitless. Finally, this morning, I decided to just order another eye patch from eBay. I was very disheartened when I discovered it would take about ten days to get a new eye patch. I really need to work on my Bible study. Waiting for the eye patch to be delivered would not do. I have been praying and praying for God to help me find the eye patch, but I never seemed to have gotten an answer. Right before I was about to place my order on eBay, I suddenly felt a strong urge to pull back the comforter on my bed. As I did this task, there was my eye patch hidden between the comforter and the sheets! I shriek in celebration. “Oh LORD! Oh LORD! I can now continue doing your work! I can get my Bible study written and not fall behind! Oh how compassionate and merciful you are!”
Tuesday, July 17, 2018
eBay. It is a lifesaver!
Over the weekend, I notice my tracheotomy tube cuff is constantly losing air. I use my plastic syringe to inject the cuff with air only to have it deflate ten minutes later. It is absolutely essential to keep the cuff of the trach tube inflated as much as possible. When the cuff is inflated, the ventilator does 100% of the breathing for me. When the cuff is deflated, the ventilator does about 10-20% of the work. Thus, having a deflated trach tube cuff means I am using a tremendous amount of my energy trying to breathe and quickly fatigue.
On Monday, I call my DME company in a panic. I am extremely exhausted from having my trach cuff continually deflate. I tell the company representative I need a new trach tube ASAP! The company representative informs me it will be a few weeks to get a new trach tube. If I need something sooner, I should go to the emergency department. I am in disbelief at the advice. I have been to my local hospitals numerous times. They do not carry my trach tube size and do not carry my specific type of trach tube. If I want a new trach tube, I either have to get a tube that is too large for my tracheostomy or too small. Additionally, the trach tubes they carry are made from material which causes me to have an allergic reaction. Knowing the advice given by the company is worthless, I seek out the internet.
I enter the key information about my trach tube into Google. I am given a list of various company websites which carry my tracheostomy tube. The cheapest price I can find is on eBay. In desperation, I order a trach tube from eBay and pray it comes quickly. To my shock, the trach tube is delivered to my door the very next day! I eagerly open up the box, and there in my hand is my brand new trach tube! I quickly change out my trach tube and immediately inflate the cuff. Oh, how relief flows though my body as I allow the ventilator to do all the work associated with breathing.
Shortly thereafter, as I am talking to a respiratory therapist, the subject of my trach tube arose. He asks me if I had a spare trach tube. I reply that this is my only trach tube, and in fact, I was waiting for my DME company to send me a trach tube as this one I had to purchase in an emergency from eBay. The respiratory therapist immediately responds, “What!? You purchased your trach tube from eBay!? You can’t just purchase a trach tube on your own.” I say, “Yes. I bought this trach tube from eBay. eBay has EVERYTHING!” The respiratory therapist shakes his head in disbelief. I, however, am grateful to eBay and to the person selling my trach tube. They have been lifesavers.
On Monday, I call my DME company in a panic. I am extremely exhausted from having my trach cuff continually deflate. I tell the company representative I need a new trach tube ASAP! The company representative informs me it will be a few weeks to get a new trach tube. If I need something sooner, I should go to the emergency department. I am in disbelief at the advice. I have been to my local hospitals numerous times. They do not carry my trach tube size and do not carry my specific type of trach tube. If I want a new trach tube, I either have to get a tube that is too large for my tracheostomy or too small. Additionally, the trach tubes they carry are made from material which causes me to have an allergic reaction. Knowing the advice given by the company is worthless, I seek out the internet.
I enter the key information about my trach tube into Google. I am given a list of various company websites which carry my tracheostomy tube. The cheapest price I can find is on eBay. In desperation, I order a trach tube from eBay and pray it comes quickly. To my shock, the trach tube is delivered to my door the very next day! I eagerly open up the box, and there in my hand is my brand new trach tube! I quickly change out my trach tube and immediately inflate the cuff. Oh, how relief flows though my body as I allow the ventilator to do all the work associated with breathing.
Shortly thereafter, as I am talking to a respiratory therapist, the subject of my trach tube arose. He asks me if I had a spare trach tube. I reply that this is my only trach tube, and in fact, I was waiting for my DME company to send me a trach tube as this one I had to purchase in an emergency from eBay. The respiratory therapist immediately responds, “What!? You purchased your trach tube from eBay!? You can’t just purchase a trach tube on your own.” I say, “Yes. I bought this trach tube from eBay. eBay has EVERYTHING!” The respiratory therapist shakes his head in disbelief. I, however, am grateful to eBay and to the person selling my trach tube. They have been lifesavers.
Thursday, July 12, 2018
When pain comes, then comes the test
I sit in my hospital bed, shaking, crying and shrieking in pain. “Oh, please someone help me!” I have been writhing in pain for many hours. No pain medication is given. I try to be a good Christian in this moment. I remember the Book of James chapter 1 verses 2-3: “My brethren, count it all joy when you fall into various trials, knowing this, that the trying of your faith works patience.”
I want to scream at my nurse; I want to break free from all my devices and try as hard as I can to make my way down to the emergency department. I need pain relief. I need pain relief now! The doctor on my case is a resident. I tell him I need 200 of fentanyl to ease the pain. The doctor has never prescribed that much pain medication at one time to one patient. The doctor is completely clueless about pancreatitis, and the pain associated with it.
I feel completely defeated. In addition to the intense pain in my pancreas, abdomen and back, I am now completely grief-stricken. I know no pain relief will be coming. I soon cannot stop shaking and screaming. I truly wish God would take me away to heaven. I try to not act in a rude manner or say mean things to my nurse. I try to be an upright believer in Jesus in all my ways.
When I think I cannot endure the pain for one more minute, my nurse comes into my room with 100 of fentanyl. This amount of fentanyl will just lessen the pain and leave my body shaking. I have lost the energy and strength to cry and scream anymore. The short, less intense pain relief quickly comes and goes. My body is completely exhausted from the seven hour pain marathon. Now, my body starts having uncontrollable muscle cramps and spasms, a condition called dystonia. I push my call button for my nurse and wait a half hour for her to respond to my call light. Through my spasming jaw muscles, I am able to mutter “dystonia crisis” and “benzodiazepines”. Thankfully my nurse can understand me through my cleanched jaw and severely labored breathing.
An hour later, my nurse returns with Ativan. Within five minutes, my muscles loosen up. Despite the intense pain raging in my abdomen, my body falls into a quick 20 minute sleep. When I awake, I continue fighting through the last few hours of my pancreatitis attack. After 12 hours of excruciating pain, I praise God that the pain is becoming less intense. I try to analyze if I have passed God’s trial. I did not curse anyone out. I tried not to be mean or scream at the nurse. I tried as hard as possible to be my best self despite all the agony pulsating through my body. I pray this is my last pancreatitis test...but if it is not, I pray to have the right attitude and to have the composure to be the best possible Christian during these incredible trying times.
I want to scream at my nurse; I want to break free from all my devices and try as hard as I can to make my way down to the emergency department. I need pain relief. I need pain relief now! The doctor on my case is a resident. I tell him I need 200 of fentanyl to ease the pain. The doctor has never prescribed that much pain medication at one time to one patient. The doctor is completely clueless about pancreatitis, and the pain associated with it.
I feel completely defeated. In addition to the intense pain in my pancreas, abdomen and back, I am now completely grief-stricken. I know no pain relief will be coming. I soon cannot stop shaking and screaming. I truly wish God would take me away to heaven. I try to not act in a rude manner or say mean things to my nurse. I try to be an upright believer in Jesus in all my ways.
When I think I cannot endure the pain for one more minute, my nurse comes into my room with 100 of fentanyl. This amount of fentanyl will just lessen the pain and leave my body shaking. I have lost the energy and strength to cry and scream anymore. The short, less intense pain relief quickly comes and goes. My body is completely exhausted from the seven hour pain marathon. Now, my body starts having uncontrollable muscle cramps and spasms, a condition called dystonia. I push my call button for my nurse and wait a half hour for her to respond to my call light. Through my spasming jaw muscles, I am able to mutter “dystonia crisis” and “benzodiazepines”. Thankfully my nurse can understand me through my cleanched jaw and severely labored breathing.
An hour later, my nurse returns with Ativan. Within five minutes, my muscles loosen up. Despite the intense pain raging in my abdomen, my body falls into a quick 20 minute sleep. When I awake, I continue fighting through the last few hours of my pancreatitis attack. After 12 hours of excruciating pain, I praise God that the pain is becoming less intense. I try to analyze if I have passed God’s trial. I did not curse anyone out. I tried not to be mean or scream at the nurse. I tried as hard as possible to be my best self despite all the agony pulsating through my body. I pray this is my last pancreatitis test...but if it is not, I pray to have the right attitude and to have the composure to be the best possible Christian during these incredible trying times.
Tuesday, July 10, 2018
Shabbat saves the day
Seven years ago, my very knowledgeable neurologist suggested a therapy with which he had had good results in his patients with mitochondrial disease. Unfortunately, before the treatment was ever sought out, my physician took a teaching position at a large metropolitan medical center. It was much too far for my mom and I to travel to go to a doctor’s appointment. Heart-broken, I ceased to be that clinician’s patient.
Several months ago, I happened to be referred to a wonderful neurologist. She does not know anything about neuromuscular disease; however, she is very kind, caring and compassionate. At a recent appointment, she brought up the same treatment option my neurologist seven years ago suggested. Although I was eager seven years ago to try something new, now I am very apprehensive to do anything since I have had so many recent emergency department visits and hospitalizations. However, the physician seemed very excited and convinced that this treatment was my last option and that the treatment would tremendously benefit me. I reluctantly agreed to the treatment.
After my appointment, I had to go to a different part of the medical facility to register. (The new treatment required IV infusion, which made it necessary for me to set up an appointment in the infusion center.) As I was registering, the woman informed me that the treatment might not be covered by my insurance. The woman informed me each infusion would be just under $500 if my insurance refused payment. (This new financial burden made me very uneasy. The doctor said at my appointment I needed two rounds of therapy in a four week time frame. So, I figured the amount I might be responsible for would be around $1,000. I am not a gal of great monetary means. However, I figured by asking family and friends and going on a payment plan spread out over 18-24 months, I might be able to afford the treatment...and if my physician really wanted me to get this infusion, I did not want to disappoint her.)
After registering, the woman wheeled me to the infusion center to set up my appointment. When talking to the infusion nurse, she told me my first round of treatment needed to be completed on five consecutive days. Additionally, my second round of therapy would also need to be done over five consecutive days. Immediately, my pulse quickened, and my breathing intensified. The therapy was not simply two infusions; it was TEN infusions!!! Yikes! If my insurance did not cover it, I would be responsible for nearly $5,000 in medical bills! There was no way I could afford this! But now, I felt stuck. I had already registered. So I continued to schedule the appointment. Since the day was nearly over, the therapy could not be started today. The earliest I could get an infusion was the following day, which was a Tuesday. The woman said the facility was open seven days a week, which meant if I did not start the therapy on a Monday (and thus ending on a Friday) I would be forced to come to the facility on the weekend. Instantly, my brain screamed, “No! Saturday is Shabbat! You can not violate the Torah by forcing others to work while you receive your infusion. No, you must decline; you must keep Shabbat holy; you must start the infusion on Monday.” I told the nurse I could not come in on Saturday as that was Shabbat. She then said I could start the infusion on Monday. I agreed to a Monday start date and went home.
When I arrived home, I searched my insurance’s website for information about infusion therapy coverage. Although the document was lengthy, it was very clear I did not qualify for coverage of the treatment. My claim would be denied. I was very grateful for this information as I knew I had to cancel my infusion appointments. There was no way I could afford $5,000. As I looked at my appointment card, I read you must cancel the appointment 24 hours in advance or you may be required to pay for that day’s infusion. I was rejoicing and praising God at that moment for Shabbat! If I had not followed God’s command and decided to break Shabbat by starting my infusions the following day (and thus receiving my fifth and final infusion on a Saturday), I might have been forced to pay $500. I would have had to cancel my first appointment on the same day for which it was scheduled because the clinic was now closed for the day. But, by obeying the Torah and delaying the start date of my infusion to Monday, I now had time to cancel my appointment without any financial punishment. Oh how great God’s mercy is!
“If you refrain from trampling the sabbath, from pursuing your own interests on my holy day; if you call the sabbath a delight and the holy day of the LORD honorable; if you honor it, not going your own ways, serving your own interests, or pursuing your own affairs; then you shall take delight in the LORD, and I will make you ride upon the heights of the earth; I will feed you with the heritage of your ancestor Jacob, for the mouth of the LORD has spoken” (Isaiah 58:13-14).
Several months ago, I happened to be referred to a wonderful neurologist. She does not know anything about neuromuscular disease; however, she is very kind, caring and compassionate. At a recent appointment, she brought up the same treatment option my neurologist seven years ago suggested. Although I was eager seven years ago to try something new, now I am very apprehensive to do anything since I have had so many recent emergency department visits and hospitalizations. However, the physician seemed very excited and convinced that this treatment was my last option and that the treatment would tremendously benefit me. I reluctantly agreed to the treatment.
After my appointment, I had to go to a different part of the medical facility to register. (The new treatment required IV infusion, which made it necessary for me to set up an appointment in the infusion center.) As I was registering, the woman informed me that the treatment might not be covered by my insurance. The woman informed me each infusion would be just under $500 if my insurance refused payment. (This new financial burden made me very uneasy. The doctor said at my appointment I needed two rounds of therapy in a four week time frame. So, I figured the amount I might be responsible for would be around $1,000. I am not a gal of great monetary means. However, I figured by asking family and friends and going on a payment plan spread out over 18-24 months, I might be able to afford the treatment...and if my physician really wanted me to get this infusion, I did not want to disappoint her.)
After registering, the woman wheeled me to the infusion center to set up my appointment. When talking to the infusion nurse, she told me my first round of treatment needed to be completed on five consecutive days. Additionally, my second round of therapy would also need to be done over five consecutive days. Immediately, my pulse quickened, and my breathing intensified. The therapy was not simply two infusions; it was TEN infusions!!! Yikes! If my insurance did not cover it, I would be responsible for nearly $5,000 in medical bills! There was no way I could afford this! But now, I felt stuck. I had already registered. So I continued to schedule the appointment. Since the day was nearly over, the therapy could not be started today. The earliest I could get an infusion was the following day, which was a Tuesday. The woman said the facility was open seven days a week, which meant if I did not start the therapy on a Monday (and thus ending on a Friday) I would be forced to come to the facility on the weekend. Instantly, my brain screamed, “No! Saturday is Shabbat! You can not violate the Torah by forcing others to work while you receive your infusion. No, you must decline; you must keep Shabbat holy; you must start the infusion on Monday.” I told the nurse I could not come in on Saturday as that was Shabbat. She then said I could start the infusion on Monday. I agreed to a Monday start date and went home.
When I arrived home, I searched my insurance’s website for information about infusion therapy coverage. Although the document was lengthy, it was very clear I did not qualify for coverage of the treatment. My claim would be denied. I was very grateful for this information as I knew I had to cancel my infusion appointments. There was no way I could afford $5,000. As I looked at my appointment card, I read you must cancel the appointment 24 hours in advance or you may be required to pay for that day’s infusion. I was rejoicing and praising God at that moment for Shabbat! If I had not followed God’s command and decided to break Shabbat by starting my infusions the following day (and thus receiving my fifth and final infusion on a Saturday), I might have been forced to pay $500. I would have had to cancel my first appointment on the same day for which it was scheduled because the clinic was now closed for the day. But, by obeying the Torah and delaying the start date of my infusion to Monday, I now had time to cancel my appointment without any financial punishment. Oh how great God’s mercy is!
“If you refrain from trampling the sabbath, from pursuing your own interests on my holy day; if you call the sabbath a delight and the holy day of the LORD honorable; if you honor it, not going your own ways, serving your own interests, or pursuing your own affairs; then you shall take delight in the LORD, and I will make you ride upon the heights of the earth; I will feed you with the heritage of your ancestor Jacob, for the mouth of the LORD has spoken” (Isaiah 58:13-14).
Thursday, July 5, 2018
Shopping til I can’t move my fingers
When holidays come, most people think about spending time with their family and friends. There are celebrations, picnics, parades and almost always an abundance of food. For me, holidays mean a day of online deals and steals. I take numerous supplements, which amounts to over 50 pills a day. These items are not covered by insurance. The only way I can afford to these essentials is by being very scrupulous with my money and shopping only when there are deep discounts. This means on holidays, I spend most of my day browsing numerous websites trying to find the best possible price for my various supplements.
The one thing I always struggle with is buying extra items. I absolutely adore tea and have a great fondness for Numi tea. Numi tea, unfortunately, is very expensive. But, during holiday sales, it is often discounted up to 50% off. Oh how my heart leaps, and my pulse quickens as I envision myself sipping a warm mug of tantalizing tea. But as soon as these blissful visions appear in my mind, I am struck with great guilt. My finances are quite limited. I know if I splurge on buying a box of tea, I will have less money available to give to missionaries, food pantries and my church’s benevolence fund. Can I really enjoy a cup of savory delight as I know my money could be helping folks just a few miles from me obtain groceries for the week, or missionaries in a distant part of the globe using my funds to pay for medical care for a gravely sick man?
My heart breaks. As much I as desire the lusts of the flesh, I know my precious money could be better spent elsewhere. I reluctantly delete my Numi tea selection from my shopping cart. I then earmark that money to send to my missionary friends trying to finance an upcoming trip. Maybe my small donation will help my friends be able to enjoy a nice hot meal and perhaps even a cup of tea.
The one thing I always struggle with is buying extra items. I absolutely adore tea and have a great fondness for Numi tea. Numi tea, unfortunately, is very expensive. But, during holiday sales, it is often discounted up to 50% off. Oh how my heart leaps, and my pulse quickens as I envision myself sipping a warm mug of tantalizing tea. But as soon as these blissful visions appear in my mind, I am struck with great guilt. My finances are quite limited. I know if I splurge on buying a box of tea, I will have less money available to give to missionaries, food pantries and my church’s benevolence fund. Can I really enjoy a cup of savory delight as I know my money could be helping folks just a few miles from me obtain groceries for the week, or missionaries in a distant part of the globe using my funds to pay for medical care for a gravely sick man?
My heart breaks. As much I as desire the lusts of the flesh, I know my precious money could be better spent elsewhere. I reluctantly delete my Numi tea selection from my shopping cart. I then earmark that money to send to my missionary friends trying to finance an upcoming trip. Maybe my small donation will help my friends be able to enjoy a nice hot meal and perhaps even a cup of tea.
Tuesday, July 3, 2018
Please excuse my social faux pas
When I was a young child, my mom and I went to a Fourth of July parade in my hometown. It was filled with lots of music, fun floats, candy and regional dignitaries. After the parade, we met one of our local representatives. My mom had gone to school with the man and was very excited to introduce me to the representative. Upon introducing himself, the very nice man held out his right hand for a hand shake. I had a plastic bag filled with candy in my right hand. I thought for a brief second to put the bag of candy into my left hand, but then I decided to just shake with my left hand. After the representative left, my mom chastened me for making such a grave faux pas. “You ALWAYS shake with your right hand. Why didn’t you shake with your right hand? You embarrassed me! Do you know how embarrassing that was?” My mother was furious with me. Although the encounter was many, many years ago, I am always haunted by that memory.
This weekend at church, as I was about to leave, my pastor stretched out his right hand for a hand shake. I immediately knew I had to shake with my right hand; however, it was simply not possible. I was holding my ventilator heater and humidifier in my right hand. The device’s cord was wrapped around my right hand along with some of my ventilator tubing. My left hand was placed on top of my right hand to help stabilize the equipment. I quickly did a summary of the situation. If I attempted to switch everything from my right hand to my left hand, I very likely would drop the equipment, equipment which costs several hundred dollars. Moreover, I would probably injure myself when the device would fall off my lap and on to my feet. I quickly decided I would disobey my mother’s wishes from so long ago and shake using my left hand.
To my great relief, the hand shake came and went without lightening striking or the ceiling crashing down upon me. Moreover, the pastor did not even seem to be phased that I made such a gross social faux pas. I appreciated the hand shake and kind words from the pastor, but I was ever so relieved when I was able to be wheeled outside into the bright sunshine. The risk of having another person wanting to shake hands was over. I thanked God to have made it through another Sunday service. I thanked God after all these years, I still try to honor and obey my mom. And lastly, if you ever see me with my lap full of equipment and my hands tangled trying to hold on to everything, please just give me a pat on the back and avoid making me endure the stress of trying to shake hands. Thanks in advance!
This weekend at church, as I was about to leave, my pastor stretched out his right hand for a hand shake. I immediately knew I had to shake with my right hand; however, it was simply not possible. I was holding my ventilator heater and humidifier in my right hand. The device’s cord was wrapped around my right hand along with some of my ventilator tubing. My left hand was placed on top of my right hand to help stabilize the equipment. I quickly did a summary of the situation. If I attempted to switch everything from my right hand to my left hand, I very likely would drop the equipment, equipment which costs several hundred dollars. Moreover, I would probably injure myself when the device would fall off my lap and on to my feet. I quickly decided I would disobey my mother’s wishes from so long ago and shake using my left hand.
To my great relief, the hand shake came and went without lightening striking or the ceiling crashing down upon me. Moreover, the pastor did not even seem to be phased that I made such a gross social faux pas. I appreciated the hand shake and kind words from the pastor, but I was ever so relieved when I was able to be wheeled outside into the bright sunshine. The risk of having another person wanting to shake hands was over. I thanked God to have made it through another Sunday service. I thanked God after all these years, I still try to honor and obey my mom. And lastly, if you ever see me with my lap full of equipment and my hands tangled trying to hold on to everything, please just give me a pat on the back and avoid making me endure the stress of trying to shake hands. Thanks in advance!
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