Happy Shavuot!!!!

Today is the day! It is Pentecost! I know many of you church going folks may scratch your head and say, "Pentecost is on Sunday. Today is Wednesday. What are you talking about?" I used to think this way too until recently.

A few weeks ago as I was in my room enjoying another beautiful Shabbat service via live streaming video, the rabbi talked about the Jewish tradition of counting the omer. The Jews count from the Feast of Unleavened Bread 50 days, with the 50th day being pentecost. The omer count would increase by one with each passing day. On the 50th day of the omer, the wheat would be ripe to harvest. Thus, Pentecost was a celebration of the wheat harvest, with the Jews giving the best of their harvest to the LORD as an offering.

As I was looking at the calendar, I noticed the count was off. When the 50th omer was to be counted, marking the Feast of Shavuot (or Feast of Weeks or Pentecost), it fell four days before Pentecost on the Christian calendar. Wait! I am confused. Isn't the Christian Pentecost a celebration of when the Holy Spirit descended on the disciples, which happened during the Jewish Feast of Shavuot (see Acts 2: "When the day of Pentecost had come, they were all together in one place...")? Why is the Jetwish Pentecost different from the Christian Pentecost? If the Christian Pentecost happened during the time of the Jewish Pentecost, why are these two different days on the calendar?

A Short Explanation:
The Feast of Shavuot has no date given in the Torah, but it must be inferred from Leviticus 23:11 and 23:15: "And from the day on which you bring the omer offering--the day after the sabbath--you shall count off seven weeks." The important phrase is mi-machorat ha-shabbat translated as "the day after the sabbath". The controversy arises because the first day of the Feast of Unleavened Bread (Nisan 15)  is considered a sabbath (i.e., a day of work restrictions). Does the first day of counting the omer start after this sabbath (on the second day of the Feast of Unleavened Bread on Nisan 16) or on the day after the regular sabbath (i.e., on Sunday)? Since the date of Shavuot depends on when the first day of the omer is counted, starting the count on the wrong day would imply that the festival would be observed at the wrong time.

Two Views:
The Sadducees believed that the word "sabbath" used in the text implied the regular sabbath celebrated on the seventh day of the week. Thus, they began the count of the omer on the first Sunday after Passover. Since Shavuot occurs 50 days later, this implies that Shavuot would always be celebrated on a Sunday.

The Pharisees believed that the word "sabbath" referred not to the weekly sabbath but to the first day of the Feast of Unleavened Bread (Nisan 15). They then began the count of the omer the next day (Nisan 16). This would establish Pentecost as a fixed date of Sivan 6 on the Jewish calendar. This date is supported by Joshua 5:10-12 when the nation of Israel first enters the land of Canaan and the manna ceases to fall from heaven: "When some of Isarel camped at Gilgal they observed the Passover on the evening of the fourteenth day of the month on the desert plains of Jericho. On the day after Passover, on that very day, they ate some of the produce of the land, unleavened cakes and parched grain. The manna ceased on the day after they had eaten some of the produce of the land, so that the sons of Israel no longer had manna, but they ate some of the yield of the land of the land of Cannan during that year." The Jews enjoyed the first day of Unleavened Bread by eating the bread from God's land. The second day of Unleavened Bread, the manna from heaven stopped falling, symbolizing it was now time for the Jews to harvest their own produce and start offering their bounty to the LORD.

Historically, the Pharisee's view has prevailed. The Feast of Shavuot (Pentecost) is celebrated on the fixed date of Sivan 6, exactly 50 days after the sabbath on the first day of Unleavened Bread. The first century historians, Josephus and Philo, both state that the "day after the sabbath" meant the second day of the Feast of Unleavened Bread (Nisan 16). Since the Pharisees ruled during the time of Jesus in the first century, it seems very likely that when the Jews gathered together to celebrate Pentecost at Jerusalem, they gathered at the time appointed by the Pharisees, Sivan 6. Since Acts chapter 2 states: "When the day of Pentecost had come, they were all together in one place" I do believe it is talking about the only Pentecost celebrated at that time, which was on Sivan 6. Happy Pentecost!

A Health Update Part 4--Joy comes in the morning

The night before the tracheostomy surgery, I was asking God over and over again if this was the right procedure for me. "Oh Lord, is a tracheostomy really my only option left? Please make it clear to me that this is the right path." As I tried to go to sleep, my rapid breathing kept me awake. I tried and tried to go to sleep. Finally around 1:30 a.m., I drifted off to sleep. At 2:30 a.m., I abruptly woke up gasping for breath, feverish and drenched in sweat. I thought to myself, "Oh, no! I need to get to sleep! I have to wake up at 5:30 to go to the hospital." Despite my desperate attempts to sleep, my breathing was simply too fast. At 5:30, I got out of bed to go to the hospital, having only slept an hour.

At the hospital things went slowly. I had to check in at 7 a.m., but I was not rolled into the operating theater until 9:44 a.m. During this time of waiting, my breathing was growing more and more ragged. When talking to the nurse in pre-op, I was overwhelmed with the sensation that getting a tracheostomy was not only necessary but urgent! My body was using every muscle it could to breathe using the BiPAP machine. My muscles burned with fatigue, and I was completely exhausted. When I was rolled into the operating theater, a tremendous peace and calm filled my soul. Lights out!

At 10:44 a.m., I woke up as I was being rolled into my room in the ICU. Immediately, I noticed I did not have a headache. Then I realized I was not gasping for breath. And finally, despite just waking up from general anesthesia, I felt as though I had more energy now than I have had since last summer! I was filled with joy and happiness! Although I could not talk to my mom, I was elated to be able to follow her conversation. It was such a relief to not have brain fog!

As the days rolled by in the ICU, I had many challenges--failed attempts at weaning from the ventilator; being told I could not swallow and needed a feeding tube; having my trach tube clogged with mucus, etc. With each challenge, I became more determined to rise above these trials and triumph! One of my biggest hurdles which I have not cleared is talking. I have a lot of mucus in my lungs which makes it hard to speak without coughing or choking on the mucus. With the tracheostomy in my throat, most of the air in my lungs is exhaled via the trach. In order to speak, I have to use a great deal of energy to force air up beyond the trach to my vocal cords. Hopefully in the days and weeks to come I can get a different tracheostomy tube which will allow air to more freely move up around the trach tube and up to my vocal cords, making it easier to speak.

As I am continuing to heal and adjust to life with a tracheostomy, I cannot help but feel overjoyed! I find myself laughing and constantly in a jubilant mood. It is such a blessing to be able to sleep and not wake up gasping for breath. It is such a blessing to be able to eat and drink while air is being forced into my lungs. What joy it is to not have a mask on my face--a mask which rubbed my nose raw and cut up my face. There are so many blessings with having a tracheostomy. Most importantly, it is such joy and relief to be able to breathe with ease!

"Praise the LORD! Praise God in His sanctuary; praise Him in His mighty expanse. Praise Him for His mighty deeds; praise Him according to His excellent greatness. Praise Him with trumpet sound; praise Him with harp and lyre. Praise Him with timbrel and dancing; praise Him with stringed instruments and pipe. Praise Him with loud cymbals; praise Him with resounding cymbals. Let everything that has breath praise the LORD. Praise the LORD!" (Psalm 150)

Jovial, Jubilant, Jubilee! Yom Yerushalayim

Let's jump, shout, and sing about! Happy 50th Anniversary of the Reunification of Jerusalem! In 70 A.D., the Jews lost control of Jerusalem when the Romans destroyed the temple. For almost 1900 years, Jerusalem remained in foreign hands and was divided in 1947. In 1967 (during the Six Day War), an incredible thing happened. Israel captured the old city and East Jerusalem, and the city of Jerusalem was reunified!

Brief Background:
In 1947, Jordan and an alliance of Arab nations rejected the United Nations Partition Plan which detailed Jerusalem to be corpus separtum (a fancy Latin phrase which means "separated body"). Jordan and the alliance of Arab states decided to invade (and ultimately conquered) the Old City and East Jerusalem. The alliance also made a failed attempt to conquer West Jerusalem, which ended up remaining in Israel's possession. The city of Jerusalem was divided along the 1949 Armistice Line until Jordan joined an array of Arab nations and invaded Israel in 1967, during the Six Day War. This time, Israel was triumphal, defeating the enemy and regaining control of all Jerusalem!

The reunification of Jerusalem ended the Islamization of Jerusalem by the Jordanian government. This program included the destruction of numerous synagogues, instituting Arabic as the official language, a ban on churches from purchasing property, a ban on church-funded social and medical programs (including funding of hospitals), and a total ban on Jews visiting Jewish holy places.

Immediately following the reunification of Jerusalem, freedom of worship for all faiths was restored! Hallelujah!

By the rivers of Babylon,
there we sat down and wept,
when we remembered Zion.
Upon the willows in the midst of it
we hung our harps.
For there our captors demanded of us songs,
and our tormentors mirth, saying, "Sing us one of the songs of Zion."
How can we sing the LORD'S song in a foreign land?
If I forget you, O Jerusalem, may my right hand forget her skill.
May my tongue cling to the roof of my mouth
if I do not remember you,
if I do not exalt Jerusalem above my chief joy.
Psalm 137:1-6

A Health Update part 3--Weeping may endure for a night

Milly, Milly! You are never far from my thoughts. My sweet, precious friend! We met via your YouTube channel when you and I were both recently diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). Your love for life and love for Jesus always inspired me. When my "POTS" started attacking my GI tract, I was so grateful you could still eat. A year later, I grieved with you and tried to comfort you when your "POTS" started affecting your GI tract. I was so grateful after all the advice you had given me, I could now help you along your journey with feeding tubes and IV nutrition.

Our "POTS" seemed to mysteriously affect our muscles. You require the use of a wheelchair before me. I am so grateful for your incredible YouTube video about how to purchase the correct wheelchair. I admired your wheelchair and all the cool moves you could do. A short time after you got your wheelchair, I too needed a wheelchair. I was always a little envious of your arm muscle strength to be able to do fancy tricks in your chair. I was just grateful when I had enough muscle strength to propel my chair down the hall.

During this time, I was diagnosed with Mitochondrial Disease. I wondered if perhaps you, too, suffered from the same disease. I was very grateful when your doctors started you on supplements to help with energy production. I was happy and yet sad to learn when you received a confirmation that indeed you did have Mitochondrial Disease. It seemed from the moment you received your diagnosis, your disease progressed rapidly.

Soon, you were having difficulty breathing and were started on BiPAP. Soon, you were using your BiPAP machine 24/7. Despite your severe shortness of breath, you managed to post two videos about your respiratory issues. I have viewed these videos many times searching for information about using the BiPAP machine.

Your mom's account of your final days on earth: You were struggling to breathe. You developed a fever and were going in and out of consciousness. Your parents and doctors thought you had developed another infection in your central line. The doctor came to your home to do a blood culture. You had made an agreement with your family not to go to the hospital if you developed sepsis. Your breathing continued to be labored during the night, and then you went Home to be with Jesus. The death report says you died of sepsis, but when the lab report came back it said you did not have a blood infection. No, you died from respiratory failure.

As I read this man's question about if I had ever fallen asleep and could not be woken up, I think of you Milly! You were in respiratory failure. Why didn't you get a trach? Oh the suffering you endured! A trach would have lessen your struggle to breathe. I know you are in heaven and now free from this tormenting disease, but I just want you to know, I will not follow you this time. I am not ready to leave this world quite yet. I still have a lot of fight left in me. I just wanted to let you know I am going to get a tracheostomy.

A Health Update Part 2--The frantic search

When I got home from my pulmonology appointment, I frantically started searching for information about tracheostomies, things which could be done to avoid getting a tracheostomy and sought advice from others with neuromuscular diseases and tracheostomies. Was there anything which I could do to prevent getting a tracheostomy? I searched and searched the internet for information.

During this time, my symptoms continued to worsen. During the night, I slept only 1-2 hours before I woke up gasping for breath. I would be drenched in sweat and would be hot with a fever. It would take 1-4 hours for my breathing to go back into a slower rhythm and for the night sweats and fever to cease. In the morning, I woke up with a headache, which only continued to grow worse and worse during the day. I was mentally in a constant fog. I had a hard time thinking and following conversations. Words would get jumbled up in my head. I was constantly misunderstanding people. Talking tired me out extremely quickly. So, I often refrained from speaking. This prevented me from saying really mean things to people, which seemed to happen any time I opened my mouth. From the moment I woke up in the morning, I felt as though I was using all my energy to stay awake. I would fight and fight to stay awake, only to fall asleep while reading or surfing the internet. I then would sleep for only 20-30 minutes before I would wake up gasping for breath, feverish and drenched in sweat.

Not finding any data which suggested I should not get a tracheostomy, I reluctantly called the doctor's office the week after my appointment to schedule the procedure for the following week. I kept praying through this all, "Lord, if I am not to have this procedure done, please put road blocks in my way." Although getting the surgery arranged was a slow process, in the end, the procedure was scheduled.

The weekend before my surgery, I posted to a Facebook group for folks with neuromuscular disease. I asked what I needed to know before getting a trach. By God's guiding grace, a man with a neuromuscular disease and a trach since 2001, messaged me. He was of great assistance in answering some of my questions. He described the symptoms he had before getting a trach; they were the exact same as mine. He then asked me if I had ever fallen asleep and no one was able to wake me up. This question startled me. I knew I was having significant symptoms but was I really at the point in my medical condition where my carbon dioxide levels might become so high I might become unconscious? Suddenly the severity of my medical condition shook me to the core of my being. I immediately thought of my friend, Milly, and wept.

A Health Update Part 1--Trying to breathe

I have written some about my recent health escapades, but I have kept many things to myself. Now, as my health becomes evident to those around me--as it is not possible to hide my health now that I have a tube in my throat and am connected to a ventilator--I thought I would write about my recent health journey.

In August, while at church, I was talking to a woman for about five minutes. I suddenly became very short of breath and felt very unwell. I had to rest my head down on the table because I was starting to black out. I continued to be short of breath for a few hours afterwards. Since that day, I found myself becoming very tired very easily and was frequently short of breath. Also, I was having trouble sleeping because I was constantly waking up not breathing.

Over the next few months, I was forced to retreat to my bed for more and more hours of the day. I stopped leaving home except to go to church because I was short of breath and extremely tired.

By November, I was constantly short of breath, even at rest, and decided to seek medical attention. The first test my primary care doctor ordered was a pulmonary lung function test. I had a very hard time completing the test because I was so short of breath. I passed out when trying to breathe in against the machine. My lung muscles were so weak, the machine was not able to register a reading for inhaling. Despite my forced vital capacity being only at 20% of normal when sitting up (and dropping to around 13% when lying down), my primary care doctor was not worried. She prescribed inhalers and assured me I would be feeling better soon. My breathing continued to worsen.

Two weeks later, I frantically called the clinic to try to get an appointment to see my doctor. I felt as though I could not breathe. Praise be to God, although I could not see my doctor, another doctor had an opening. As soon as the doctor saw me gasping for breath and struggling to talk, he immediately told me he was going to admit me to the hospital. He told me he was going to start me on non-invasive ventilation which would help me breathe. I was started on the non-invasive ventilation at the hospital and was eventually discharged. At home I started using the ventilator at night and when I felt tired during the day. After several weeks, I was using the ventilator nearly 24/7.

Two weeks after my hospitalization, I had a follow up appointment with the doctor who admitted me to the hospital. Although he was a primary care doctor, he had done extensive training in pulmonology. The doctor bluntly told me I was going to need a tracheostomy in the future. I was shocked and startled by this news. (Sure, I was having trouble breathing, but I was feeling better using the ventilator. No, the doctor was very wrong. I was not going to need a tracheostomy.) The doctor referred me on to a pulmonologist. My breathing continued to worsen.

In February, I had my appointment with the pulmonologist. He immediately diagnosed me with respiratory failure with hypercapnia (high carbon dioxide levels). He then told me I was probably going to need a tracheostomy in the future. This time, the words did not shock me. Although I did not want to get a tracheostomy, it seemed my respiratory muscles were growing weaker and weaker and getting a tracheostomy was in sight. The doctor ordered a few more tests and told me to follow up. At my next appointment in March, my doctor was very distracted and seemed frustrated that the tests he had ordered were not completed by his office. I then had more lung function testing done. Again, I could not inhale enough to get a reading from the machine. The doctor did not share with me the results. He just said the results showed I had severe muscle weakness, and I should follow up in a month. My breathing continued to worsen.

In April, my appointment with my pulmonologist was cancelled the day before my appointment. But have no fear, God was carefully orchestrating everything. I was able to schedule an appointment with one of my doctor's partners who practices in the same pulmonology group for the very next day. The new pulmonology doctor, as soon as he saw me, was alarmed. "You are in respiratory failure! I do not need any tests to tell me this! I can see it just from your breathing. You need to be hospitalized right now! You need a tracheostomy!" I was very grateful for this doctor's concern for my health, but I was not going to be hospitalized. My parents were leaving the next day to go out of town. They would be gone 10 days. From experience, I know you never go to the hospital alone. You never have a risky procedure done and then recover alone at home. No, I politely told the doctor, I would schedule the procedure at a later time when it was convenient for my family. The doctor told me he was scared to send me home because he thought I might stop breathing. I assured him I would be fine. I had been struggling to breathe for quite some time; I could struggle another two weeks.

51 Weeks...A Broken Promise

One year ago, my life started a new chapter. With all the changes in my life, I decided to make a commitment. "Lord, I wish to attend church for one full year." With this commitment made, I embarked on a one year journey, which has been perhaps the most challenging year of my life.

This fall as my breathing became a heavy burden, there were many, MANY Sundays in which I simply did not have the energy to go to church. But remembering my promise to God, I got up each Sunday and somehow made it to church.

One Sunday this winter, I was exceptionally sick. I was extremely nauseas. Despite this, I went to church. On the way, I stopped two times to vomit. I then turned around and started driving home. I drove a very short distance before I had to vomit again. I was praying to God, "Lord, make me feel better or I cannot fulfill my promise. You know I need to feel better to make it to church. Heal me or I am going home." After vomiting the third time, I suddenly felt less nauseas. I sat for a little bit, letting the cold air from the air conditioner dry my sweat-drenched face. In a short time, I felt as though I could make it to church. I turned the car back around and went to church. It is nothing short of a miracle I was able to attend service that day!

This spring, I was in constant prayer to God on Sunday mornings. "Lord, give me the strength to make it through another church service." The final month of Sundays, I was physically in church, but the tremendous brain fog and mental confusion from high carbon dioxide levels due to respiratory failure limited my ability to understand what was going on around me. I kept praying, "Lord, I have to make it until May to fulfill my promise." May 7 would be the final Sunday I needed to fulfill my promise to God.

As hard as I tried, I failed to keep my vow. On May 3, I had surgery to get a tracheostomy. On Friday, May 5, I was in the ICU ward of the hospital in utter despair. The doctor said it would be at least several days before I would be discharged. I was crushed that I was going to be breaking my vow. God, hearing the lamentations of my heart, sent my pastor to visit me in the hospital. My spirit revived upon seeing him. "Oh Lord, I know this is not Sunday and this is not church, but here is my pastor. I pray that this is a sign that it is ok that I could not fulfill my vow. I tried Lord, but I am not sure I could have endured much longer without getting a tracheostomy. Please forgive me for making a vow and breaking it."

This Sunday, I used all my strength and energy to go to church. My mom thought I was crazy. "You just got out of the hospital and are still recovering from surgery. You are not going to church." As much as she protested, I was determined to go to church. I knew I owed God one more Sunday. Resigning herself to my request, my mom drove me to church. (Thanks mom!) As some of the ladies at church were talking to me, many of them mentioned how much color my face now had. "The last time you were at church, your face was as white as that wall," several ladies remarked. Like a soft embrace, these words comforted my soul. I indeed was very sick. I was fighting to live. The church ladies' words were confirmation that I needed to get the tracheostomy.

Although I am extremely sad I had to break my vow, I am very grateful that this Sunday, I was able to enjoy the sermon! What a blessing it is to be able to hear and understand the preacher now that my carbon dioxide levels are normal! Praise be to God! "Lord, I would love to make another vow to attend church for one year. However, we both know how fragile my health is. I would hate to break another vow. Instead, please give me the strength to attend many services this year. Thank you for challenging me to rise above this illness and seek Your glory. Amen."

To infinity and beyond--Thank you mom!

As I think back on my life, I wonder why I have been blessed with such an amazing mom. From the moment I was born, she has wrapped me in a thick blanket of love. When I was a child with endless energy, she tried her hardest to put me in as many activities as possible to provide a positive outlet for a rambunctious child. When I showed an aptitude for some of the activities, she worked various jobs to be able to provide the finances for her and me to travel across the country to compete in various competitions. No matter what the results were, I was always her favorite.

As a young adult, she continued supporting me in my various adventures. When the traveling bug struck, she happily accompanied me across the USA, Canada, Europe, Hawaii and the Caribbean. I am filled with much laughter and delight as I think about all our escapades in non-English speaking countries. Together we used sign language and a lot of guessing to decipher driving directions when we were lost. And sometimes my cheap ways provided for some hilarious stories. (Remember the time I was out of Swiss Francs and did not want to get any more? Instead of taking the gondola down the mountain, I convinced you we could walk. When the paved road turned into a mountain hiking path, suddenly we had to carry our luggage down the mountain, across a stream and back up part of another mountain. After a couple hours, we made it! And just think, we saved $5!)

When my health took a nose dive, she was always by my side. She drove me to countless doctor's appointments and stayed too many nights next to me while I was hospitalized. She was my greatest advocate to ensure I received the proper medical care. When one medical facility would give up on me, she would encourage me to seek out another medical center. No matter how far we had to travel, she would drive me to my appointments.

Throughout the years, she always tries hard to provide treats for me. Knowing my love for butternut squash, she once got me 35 pounds of squash for Christmas! (Best Christmas gift ever!) If I am in the hospital, she always tries to buy me flowers or a plant to brighten up my room. Knowing my love for tea, she recently gave me about 100 bags of an assorted variety of tea. (Every day I wake up, I am so excited to boil some water to make tea with the tea she gave me!) When I am feeling really sick, she will often drive to the store and find one of my favorite foods to cheer me up. Additionally, she often chokes down whole milk because I love whole milk, especially in my tea!

I know these last few months have been especially hard on my mom, but she has risen to the occasion. When the nursing staff kept me up all night after having surgery, my mom fiercely scorned my nurse and doctor for waking me up. (Thanks to her, the nurses left me alone as much as possible during the night.) When I could not go home from the hospital until someone  learned how to suction and change my  tracheostomy tube, she fearlessly received the training and did not complain when she had to clean a tracheostomy tube filled with thick mucus. (Sorry mom!!!) When I was trying to figure out how to wash my very dirty hair without getting water in my tracheostomy tube, my mom offered to wash my hair in the kitchen sink. (Oh, happy dance! I now have clean hair!)

Although I am very sorry my life has burdened my mom with my various health trials, I am very grateful we have been able to spend so much time together. It is such a blessing to have such a caring mom. It is such a joy to have someone always by my side cheering me on. Wherever this life leads us, I know my mom will shower me with endless love. With much love! Happy Mother's Day Mom!!!

"Love is patient, love is kind and is not jealous; love does not brag and is not arrogant, does not act unbecomingly; it does not seeks its own, is not provoked, does not take into account a wrong suffered, does not rejoice in unrighteousness, but rejoices with the truth; bears all things, believes all things, hopes all things, endure all things" (1 Corinthians 13:4-7).

Just another day in the ICU

It has been a week, and I am still in the ICU. My constant need to escape the confines of this hospital has given way to boredom, then to sarcasm and now to apathy. I want to go home, but I have stopped hoping that every person I see in the hallway is my ticket to freedom. I feel like I have made friends with all the  staff in this department. There is the cleaning lady who speaks broken Englsih but always seems happy to see me. There are the respiratory therapists, the speech therapist, the dietician, the nurse secretaries, the nurse assistants, the nurses, the charge nurses, the medical scribes, the doctors, the lab techs, the radiology techs, the physical therapist, the people who come in to check the machines in my room, and perhaps a few other people who visit me almost daily. Every morning, there seems to be a parade running through my room. I sleepily watch as these folks do their jobs and leave. Since it is extremely difficult to speak, I usually just smile, nod my head and use gestures to communicate. I always try to be as pleasant as possible to everyone who walks into my room.

My goal while hospitalized is to not be a difficult patient. I try not to use my call button and try to patiently wait for the nurse or medical staff to visit my room before making requests. I also like to be independent. As soon as I am well enough to do things on my own, I do them. This sometimes makes the nurses mad because they feel I should ask for assistance. My philosophy is if I am discharged home, there will be no button to push to call for assistance. I will have to do things on my own. My goal is always to be as independent as possible before being released home.

Today, my independence was put to the test. The respiratory therapist showed me how to change out the inner cannula on my trach tube, how to change the collar which holds my trach tube in place, how to change out the ventilator tubing, how to clean in and around the tracheostomy, and finally how to replace the suction tubing which is attached to the ventilator tubing and trach tube. I think most people would be overwhelmed, but I was so happy to learn all these steps. Anything which frees me from relying on other people makes me very happy.

Now as the sun is setting and night time is creeping across the sky, I hope for a restful night's sleep. However, every night machines wake me up with their beeping noises, the respiratory therapist comes in to check my ventilator and nurses burst into my room absolutely needing to take my temperature at 3 a.m. and also to ask if I want to take a sponge bath. Oh how I long for a good night's sleep...maybe tomorrow will be that blessed day when I am granted my freedom to leave this hospital. Until then, "Rejoice in the Lord always, and again I say, Rejoice!" (Philippians 4:4).

Marco saves the day!

Yesterday, the ICU was relatively short staffed, which meant my tracheostomy and ventilator got neglected. Mucus builds up in my lungs and needs to be suctioned several times a day. Additionally, because the air is pumped directly into my lungs, it needs to be humidified. Non-humidified air will dry out the lungs, making the mucus extremely thick. Yesterday, my humidifier was out of water all day. No one suctioned my lungs until 11:30 p.m. By this late in the day, most of the mucus had become extremely thick. The suctioning was rather ineffective, leaving most of the mucus in my lungs. In a vain effort to loosen the mucus, I found the distilled water and filled the humidifier myself. I hoped the mucus would loosen up over night.

Today, I felt like I had a bad chest cold. I could not breathe. I got up to go to the bathroom and nearly passed out. I was huffing and puffing, but hardly any air was getting into my lungs. When I layed down, I was overcome with coughing attacks. The mucus was audible as a bad wheezing radiating from my tracheostomy tube. I asked the nurse to suction my lungs. He did it once, but very little mucus came out. He then called the respiratory therapist. She squirted a bit of saline into my lungs to help loosen the mucus. She suctioned the lungs once. Despite being in respiratory distress, she refused to suction any more. My nurse told me to just relax and left my room. I fought to breathe for another five minutes before summoning the nurse back to my room. Breathing was becoming exceedingly difficult. The nurse suction two more times and was able to get more mucus out. Despite his efforts, I was choking and coughing trying to breathe.

Praise be to God, the commotion of my coughing and the alarms going off on my ventilator gained the attention of the charge nurse. The charge nurse asked if my nurse needed any assistance. My nurse said no. The charge nurse came into my room and assessed the situation. He folded up some paper toweling and came to my bedside. He then disconnected my ventilator hose from my tracheostomy tube. He told me to breathe in as much as I could and cough as hard as I could. As I did this, globs of thick mucus sprayed out of my tracheostomy tube. I kept coughing and coughing and thick mucus kept erupting from the hole in my throat. Finally, after several minutes of violent coughing spells, I suddenly could breathe again! The horrible congested noise ceased coming from my throat. The coughing stopped, and my breathing relaxed back into an easy rhythm. When I was growing very tired, and things seemed to be growing desperate, God intervened, sending the charge nurse, Marco, to my aid equipped with the knowledge to free me from my torment. Praise be to God!

"I will bless the LORD at all times; His praise shall continually be in my mouth. My soul will make its boast in the LORD; the humble will hear it and rejoice. O magnify the LORD with me, and let us exalt His name together. I sought the LORD and He answered me, and delivered me from all my fears" (Psalm 34:1-4).

Good night from the ICU

As the sun sets, the visitors go home. The day shift workers make reports to the in-coming overnight staff. The doctors and therapists quietly slip out the back door. The frenzied chaos which encompasses the ICU during the day, lulls to the murmuring of the overnight crew's voices in the hallways. The patient room doors are closed; the blinds are partially lowered on the windows. An eery silence takes hold of the floor.

My room looks down the hallway toward the exit door. It beckons me, calls me during the night. Escape to freedom. Escape to a land free of being poked and prodded, a land in which you can decide when and how long you want to sleep, a land free from machines beeping in the night. I stare longing at that door. How much longer? My mind screams, "I hate hospitals! I hate medicine! How did I get stuck in this mess!?" I measure the hallway. Can I just stroll down the hall and slip out that door? As much as I want to, I doubt I could get very far. With so many machines hooked up to me, by the time I would get all the wires unhooked, someone would be bound to notice the cacophony of machine alarms going off in my room.

I lean back in bed. The obstacle is too great. Besides, once I escape the ICU, how would I get home? I have no money, and do not have a car. I doubt this tired out lady dragging a ventilator behind her would get very far. I quietly watch the seconds on the clock tick away. I know each second is a precious gift from God. But I want to be anywhere but here. My mind drifts back to my mom's conversation. She was telling me about the other folks in the ICU. A woman in her 90's who is unresponsive, an obese man in his 40's struggling to breathe on non-invasive ventilation, and a sedated elderly man. My mom has never seen anyone visit these folks. I wonder if anyone knows or cares they are in the hospital. I bow my head and start praying. Praying for these folks to not be alone. Praying for these folks to know Jesus. Although I may want to be anywhere else in the world, I gratefully pray for all those on this floor and in this hospital. May God grant them a peaceful night. "In peace I will both lie down and sleep, for You alone, O LORD, make me to dwell in safety" (Psalm 4:8).

Someday...

As I prepared for my tracheostomy surgery, I savor things which could be my last. I joyfully consume a large pot of my favorite English tea. Ah, nothing rejuvenates me like a nice pot of good tea. (Having a tracheostomy could inhibit my ability to swallow.) With the caffeine roaring through my blood, I head off to conduct what could be my last Bible study. I praise God that I have enough breath to get me through each sentence. I praise God for allowing me week after week to teach His word. I savor every moment. Will this be the last time I will be able to speak? Will this group ever hear my voice again? I hold back these thoughts and allow the abundant splendor of hosting this Bible study to wash over me. (Having a tracheostomy could prevent me from speaking.)

When I arrive home, I eat one last meal--shrimp and vegetable soup, salad with all my favorite veggies, boiled green beans, a baked kohlrabi, whole milk and a frozen banana for desert. How delicious each bite tastes. I wonder when I will next be able to eat such treats.

Exhausted and struggling to breathe, I take a shower. As the water runs down my neck, I think, "Will I be able to shower with a tracheostomy?" As I wash my hair, I think, "When will be the next time my hair is washed?" I savor the water pouring down on my head. This could be the last time I can shower like this.

The next morning, I watch the sun rise as we drive to the hospital. What a glorious sight! A multitude of birds sing "Good Morning!" to each other as I enter the hospital. The noisy symphony reminds me of the birds at my house. They make a similar ruckus as I leave for church on Sunday mornings. I wonder when I will next be able to attend a service and see my dearly beloved church family.

As I am waiting to be wheeled down to the operating preparation room, I suddenly feel the need to void some of the tea I consumed the night before. I cheerfully make my way to the bathroom. I wonder when the next time I wil have this freedom to go without assistance and without being hooked up to machines.

In the pre-op area, my breathing is ragged despite being on my BiPAP machine. I gasp to talk to the nurse. I am growing so very tired. The nurse seems surprised how short of breath I am. I wonder if she will be the last person to hear my voice. Right before I am rolled to the operating theater, a nurse gives me light sedation through my IV. Things are growing foggy. Breathing is so very hard. I pray as I go down the hall, "Thank you Jesus for all your abundant blessings. Please protect me through this surgery. Give wisdom to this surgical staff. Whatever limitations this surgery brings about, I know someday I will be able to do all things for You in heaven. I will sing and shout and joyously serve You. I can't wait for that day, that "someday" to be free of all these health burdens. But until that day, give me the strength and courage to carry forth. Amen"

Back to the very beginning...

When I was about eight year old, I suddenly developed difficulty breathing. It happened mostly in humid weather and when the temperature reached 85F/30C degrees or higher. Upon a visit to the pediatrician, I was diagnosed with exercise-induced asthma. I never did any lung function tests; instead, the doctor gave me an inhaler stating it would take away my symptoms. I used the inhaler diligently; however, the shortness of breath, chest pain and the sensation that I was trying to breathe through a plastic bag never went away. Over time, I learned to live with the symptoms.

When I became severely sick in early 2009, my chief complaint was shortness of breath. The very first test that was prescribed was pulmonary function testing. When trying to complete the testing, I passed out a few times from sheer exhaustion. I struggled greatly to breathe in against the machine. I do not recall all the specific results; however, I do remember the testing showed I had restrictive lung disease. The pulmonologist upon reviewing the results was baffled. Restrictive lung disease was usually caused by scarring of the lungs--conditions such as tuberculosis, asbestos exposure, pneumonia and various other lung-scarring disorders. These disorders show up as abnormalities on an x-ray of the lungs. Since my lung x-rays were normal, the doctor decided the abnormal test results were from lack of effort. Furthermore, it was declared all my symptoms were caused by illicit drug use. Crushed by this erroneous "diagnosis", I sought other medical treatment at other medical facilities and buried these test results.

A few months later, a doctor discovered my heart rate sky-rocketed upon standing up. After further testing, I was diagnosed with postural orthostatic tachycardia syndrome (POTS). The main gist of this syndrome is your heart rate goes really fast when you are upright. When you lie down, the heart rate will go back to a normal rate. One thing that always bothered me was my breathing. The doctors always told me my breathing was fast because my heart rate was fast. I never believed this to be true because after my heart rate would become normal after lying down, my breathing remained fast for several hours afterwards. Additionally, the more tired I was, the worse my breathing was. Despite my concerns, no one ever referred me to a pulmonologist or ordered lung function testing.

This November, when I was having significant breathing problems, a doctor finally ordered lung function testing. It was almost comical doing the testing because the exact same things happened like my previous lung function testing. I passed out and had a terrible time trying to inhale against the machine. (This time, the machine was unable to get a reading for my inhalation because my respiratory muscles were so weak.) The results showed my forced vital capacity was 20% of normal. The doctor interpreting the results did not think much of the results. I was prescribed inhalers and told I would be breathing better very soon. The inhalers did not work.

In my search for answers, I discovered neuromuscular disease can cause respiratory muscle weakness. (Mitochondrial Disease is a type of neuromuscular disease.) This manifests itself as a restrictive type of lung disorder. I also read, as soon as forced vital capacity for a person with a neuromuscular disease drops to 50% of normal, they are to be immediately started in non-invasive ventilation. Wow! I should have been using non-invasive ventilation for some time considering my forced vital capacity was at 20%. Thankfully, I never had to explain this all to a doctor. Instead, I became very sick with acute respiratory distress in December, and a doctor very knowledgeable about the lungs recognized I had respiratory muscle weakness and prescribed non-invasive ventilation.

Now, as I reflect back on all this, I wonder how long have I needed non-invasive ventilation? How long has my respiratory muscle weakness been causing my shortness of breath? On the upside, I am grateful to have found the cause to my shortness of breath and am grateful to be getting treatment for it. It seems this has just been another test in patience."Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope" (Romans 5:1-4).

Yom HaAtzmaut: Let's celebrate!!!

During World War II, one in every three Jews in all the world were killed. After the war, the Jews who survived the onslaught of concentration camps and having most of their cities destroyed were faced with a new dilemma--a place to call home. With nothing more than a determination to start a new life, thousands of Jews sought their native homeland, Israel. Amazingly, in 1948, Israel became a nation...and by God's protection, tiny Israel has survived!

Now, 69 years later, Israel bustles with commerce. They are a leading exporter of agriculture and grows almost every kind of fruit except pineapple. A tour of the land reveals thousands of tour buses packing the streets and Biblical landmarks as Christians and Jews travel from around the world to experience the Holy Land. Shops and kiosks line the streets selling every kind of sacred trinket imaginable--t-shirts, key chains, miniature menorahs, magnets, matzah bread and even ram's horns (just in case you want your own personal shofar to wake up all your neighbors).

I smile from ear to ear as I think about tiny Israel surviving for so long amidst enemies all around her. Time and time again, Israel's neighbors have attacked her. And time and time again, Israel stands her ground...and sometimes such as the Six-Day War in 1967, Israel gains more land. But really, who can prevail when fighting God? The Jews are God's chosen people, and Israel is God's chosen land. So let's break out the cake, blow the shofar and celebrate Israel's Birthday! Happy Independence Day Israel!

"Now that LORD said to Abram, 'Go forth from your country, and from your relatives and from your father's house, to the land which I will show you; and I will make you a great nation, and I will bless you, and make your name great; and so you shall be a blessing; And I will bless those who bless you, and the one who curses you I will curse. And in you all the families of the earth will be blessed'" (Genesis 12:1-3).