May our words bring blessing and not division

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

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

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

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

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

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

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

Waiting for the phone call which never comes

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

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

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

Praying I am soon on the path to better health.

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

In the beginning...another new adventure

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

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

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


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

Do you ever have one of those appointments...

Thank you everyone for the thoughts and prayers for my recent appointment. I am sure they helped guide my appointment.

A brief recapitulation of my appointment: The doctor agreed I seemed to be ill. Due to my symptoms (especially my shortness of breath), he wanted me to go to the emergency department (ED). I refused. He told me again he thought I should go to the ED. I said, "No thanks." I employed the helped of my mom. She agreed the ED/hospital is not where she desired for me to go. For the entire appointment, the physician kept asking/telling/begging me to go to the ED. I stood my ground and refused to go. The doctor ordered some tests. The final results should be available some time this week. The physician said he would call me with the results.

When I left my appointment, I felt like I had a victory. “Yippee! No ED/hospital for this girl. Time to enjoy the day!" But, then I was a little bit confused. "Wait, what just happened? What is the treatment plan?" The doctor was not explicitly clear what was going to be done. On one hand, he said he wanted to set up IV antibiotics immediately. Then, he said he wanted to wait for the test results before prescribing any IV medicine. He also said he wanted me on an inhaled antibiotic.

In the end, I feel like something is going to be done. The doctor left my PICC line in my arm, which means I still have IV access for IV antibiotics. Whatever the treatment plan will be, hopefully I will soon be on the path to better health and will be infection free.

Antibiotics complete, time for a follow-up

Recently, I completed another round of antibiotics. This time, the IV antibiotics were combined with antibiotics inhaled through a nebulizer. Two different antibiotics. Two different classes of drugs. Perhaps this would be the magic medicine to finally rid my lungs of an uninvited visitor called pseudomonas.

After completing the antibiotics, I felt great! Oh the energy I had and the ability to breathe without coughing! It was wonderful. It was glorious. It lasted about 24 hours. Then, my symptoms started returning again. I tried to remain cheerful and confident. Perhaps, I acquired a virus. Perhaps, I was just imagining the decline in my health. Day after day, I felt a little bit worse.

Now, it’s time for a follow-up appointment. I do not want to go back on any more antibiotics, but I am not sure what else can be done. I feel as though if I do nothing, I will be back in the hospital with a severe infection in the weeks to come. The last time I became extremely ill from pseudomonas, I developed sepsis and am still recovering from the complications from that hospitalization. This is not something I want to repeat again.

I am praying my doctor has insight and sees my dilemma. I pray my doctor decides a course of action which will lead me back to the road to better health. Praying some day soon I will be infection free.

Clean sheets, clean floor. Who could ask for anything more

Several weeks ago, I started another round of IV antibiotics. I also began a course of antibiotics administered via a nebulizer. For too many hours a day, I was hooked up to an IV or nebulizer machine. I constantly had to keep an eye on the clock to ensure I received the right medicine at the proper time. Many times, I would fall asleep while receiving the IV antibiotic. When I would wake up and see the IV was empty, I would frantically disconnect the medicine and flush my PICC line with saline and heparin. (Antibiotic left in my PICC line can cause the line to clog and render the line unusable.)

When connecting up the IV antibiotics, I often would forget to close the line before spiking the solution. This translates into the medicine flowing freely (and quickly) down the tubing and on to my bed or floor. No matter how much I tried to clean up the liquid, the medicine stained my bedding and left sticky smudges on the floor. Additionally, the nebulized antibiotic vapor would escape my ventilator tubing via the exhalation valve. When the antibiotic vapor dried, this too left stains on my bedding.

When I was done with this round of antibiotics, I was so gleeful my bedding and floor could be washed. When the fresh linens were returned to my bed, I was thrilled to be able to lie down without feeling on my skin the dry sticky areas where the antibiotic had leaked. Additionally, after my floor was scubbed, I was overjoyed I could place my feet any where on the floor without having to worry about getting sticky antibiotic residue all over my feet.

Often we overlook the little things in life. I am so happy to be able to sleep, eat and go about my day without having to prime tubing, run antibiotics and frequently flush my PICC line. I feel so free to not have to constantly keep an eye on the clock. What a blessing it is to be able to move about without being attached to extra apparatuses.

Follow Your Dreams...Cancelled

I sit in my bed, trying to read my notes. My hands shake uncontrollably. The room is spinning. My resting heart rate is 130 beats per minute. I attempt to steady my vision, but the text on the page is out of focus. I have been fighting, fighting so hard to get through every day, to get through every hour, to get through every minute. Here I am pursuing my dream...a dream which is about to be shattered into a million pieces.

After struggling for what seems like many days, I finally throw down my notes. I realize this fantasy I am desperately hanging on to must end. This one dream, my only dream since I was three years old, has ended. I make the decision--it is time to give up and live with my parents.

It is a Saturday. I hope my mom is home. I place the call. The phone rings. My mom answers. I attempt to muster much grace and eloquence as I tell my mom the news. Instead, tears burst forth, and I sob, "Mom, I am coming home." It sounds as though my mom is crest fallen, but she also has a tone of resignation in her voice. She says, "I have known for a while--I was wondering when you were coming home."

Her words shock me. How did she know I would not be able to finish? Was I really that sick? Her words make me realize I have been living in a deep state of denial for a long time. I thought if I had enough determination, if I had the right attitude, I could do anything. Perhaps for some people, this is true. For someone with frail health, it does not matter how mentally tough you are. If your body is failing you, you cannot pursue a goal which requires you to stand for hours on end and endure on-call and overnight shifts. Even if your mind says, "Yes, I can!" Your body screams, "No! I can't!"

I notify my friends I am withdrawing from the program and going home. To my shock, my friends come immediately to comfort me. Their quick response has always made my heart swell with gratitude. To have such sweet, caring friends is such a rare thing to find. We talk. We laugh. They raid my belongings for food and anything else I will not be taking with me. All too quickly, the dream I have lived my whole life for evaporates into thin air. All that remains of this cherished time are memories...memories which are all too soon fading and disappearing.

The following week, I leave and return to live with my parents. For the next year, extreme adrenal exhaustion keeps me bedridden. I often resort to crawling on my stomach to the bathroom because any time I stand up, my heart races out of control, and I black out. I try desperately to recover. But healing never comes.

In the years to come, when I see old high school friends and other associates from long ago, I am continually confronted with the question, "Why are you back here? I thought you had big dreams and high aspirations." I explain I have developed a series of health complications, but I can see from their disdainful looks, they do not believe me. They simply reply, "Well, you did not try hard enough. It was too challenging for you. You did not give enough effort. You were lazy...etc., etc." Their words sting me to the core.

I want to scream out, "But you have not been through everything I have! I gave every ounce of energy to pursue my dream. God graciously allowed me to live out my dream until one day I started feeling sick. After three months of being gravely ill, I developed sepsis with organ failure. Then, three months after that, I suffered another round of sepsis. A month later I had an acute adrenal (Addisonian) crisis. Two months later I suffered a stroke. Every health crisis worsened many underlying health issues. Despite all this, I tried to continue on. Month after month, I pushed as hard as could, but in the end, it was simply not possible to continue. Moreover, as time has progressed, my health has only continued to decline." As much as I want to shout this response, I cannot for I am using all my energy to fight back the tears welling up in my eyes. I keep my eyes down. I flee away from the situation at the first opportunity.

As this tenth anniversary comes to pass, it is hard to comprehend I once lived a life so different from the one I live today--a life without a ventilator, wheelchair, infections, PICC lines, endless medicines, etc. There was once a time when nothing seemed impossible. There was once a time when the dreams I dreamt were my reality.

It's Here!!! The Happiest Day of the Year!

After eagerly waiting for this day to come, now the sun was descending toward the western horizon. In a few short hours, the sun would set, and it would be Yom Kippur! The phone rings. My mom answers it and talks to the person. When she hangs up the phone, she enters my room. "That was the infusion company. They got everything approved. They are sending out the antibiotic tonight. It will be here in the morning. When it arrives, we need to call the home health nurse. She needs to come and administer the first dose to you."

Upon hearing this, my heart sinks. My mind cries out, "No! NO! This is not good! Tomorrow is Yom Kippur. It is a Shabbat. It is a day of rest. No one is supposed to do work for me. Sending out the drug tonight means people will have to work to drive my package to a sorting facility. In the morning, a delivery person will have to drive my package to my house. Moreover, calling my home health nurse means she too will have to work when she drives to my house and administers the drug. Oh this is not good! This is not good at all! Having other people work for me means I will be breaking Shabbat."

I am too heart-broken to say anything. My mom leaves. I pray to God that if this is not supposed to happen, my package delivery will be delayed until after Yom Kippur. When the sunsets, I watch a live streaming Yom Kippur service. I try to allow the beautiful service to soothe my broken heart.

In the morning, I sleep long. When I get up, it is around 11 a.m. My antibiotics have already been delivered to the house. I open the box and fight back tears when I see the medicine neatly arranged inside. My mom tells me she has called my home health nurse. She is going to be here in the afternoon. I place the medicine in the refrigerator. I then go back to bed and watch more live streaming Yom Kippur services.

Shortly before 2 p.m., I make my way to the living room. I sit on the couch and continually apologize to God for making this day, which is the holiest day of the year, just as common and ordinary as any other day of the year. I apologize for making people work for me on this day.

When my home health nurse arrives, she conducts her usual routine. She takes my vitals, checks my PICC line and asks me a standard series of questions. When she completes everything, she takes one container of antibiotic out of the fridge. She primes the pump and tubing. Soon, she starts infusing the drug into my PICC line.

Very quickly, I am not feeling well. I develop a headache which continues to intensify. My breathing grows labored. I cannot sit up any more. I slouch to the side. I feel impending doom like the world is ending. My home nurse is busy filling out paperwork. My mom notices my abrupt change in health. My mom alerts the nurse. The nurse talks to me. My tongue is thick. It is terribly difficult to speak. My nurse grabs the emergency medicine which came with the antibiotic. She prepares the Benadryl and epinephrine. She administers both drugs. She then calls 9-1-1.

A short time later, the ambulance shows up at the front door. Thankfully, the Benadryl and epinephrine have worked their magic. I am starting to feel a little bit better. I can now speak short sentences. The emergency medical workers help me on to a stretcher. I am then loaded up into the ambulance and taken to the hospital. As we make the long drive, I continually apologize to God. "Oh, I am so sorry. I have continually violated this day. Now, I am making two more people work, and when I arrived at the hospital, I am going to be making medical personnel at the hospital work too. Oh, I have really messed up this day!" I am grateful the anaphylactic reaction along with the sedative effects of the Bendryl make it very difficult for me to move or exhibit reactions. The tears welling up in my heart never flow from my eyes.

When I arrive at the hospital, God arranges for a very kind physician and amazing nurse to tend to me. The doctor runs some tests. My mom informs the physician she just wants to make sure I am stable. She then is going to drive me nearly 400 miles to the medical facility where my doctors are located. The doctor agrees to her plan. Soon, the physician gives the green light that I can leave. I am grateful to be leaving the hospital...but I plead with my mom to not take me to another medical facility. "I am fine. Let's just call my doctor in the morning." I desperately want to get home; I want to at least try to salvage just a little bit of this happiest day of the year. But, my mom insists my physician said if I had a reaction to the antibiotic, I should come to the hospital.

I am shocked when we arrive home; my mom has almost everything I need for the journey already packed up. While we were waiting for the ambulance, she began to pack. She continued to frantically pack while I was loaded up and taken to the hospital. She then was able to arrive at the hospital very shortly after I had been examined by the emergency department physician. Seeing all the work my mom had done, I reluctantly decide to make the long journey to the medical center.

As we begin our trip, we drive westward. The sun is just above the horizon. It is still Yom Kippur. I apologize again to God for breaking Shabbat. I watch as the sun's rays sink lower and lower below the horizon--such a beautiful sunset! I continue to watch as the last light grows paler and paler. Quickly, the light fades, and the darkness takes over. Yom Kippur has ended.

This was supposed to have been the happiest day of the year. Quite frankly, it ended up to be the saddest day of the year. For the next year, this single day plagues my soul with guilt and sorrow. For one year, I have been asking God to allow this next Yom Kippur to be one dedicated to Him. Today,  at sunset, begins Yom Kippur. As much as I wish things would be different from last year, they remain very much the same. I am still fighting off Pseudomonas. I have another PICC line. I am again on IV antibiotics. I have asked God for nothing to disrupt this day. I am praying this year, this Yom Kippur, it truly will be the happiest day of the year.

(For the link to Part One click here)

The Road to...The Happiest Day of the Year

As one passes from day to day, it is hard to imagine how one decision can cause a cascade of events to occur, which continues for many weeks, months and even years to come. Last year, one small decision, which seemed rather insignificant at the time, has dramatically changed my life.

On July 10, 2018, I underwent a procedure called an ERCP. This entailed a scoped being placed down my throat, through my stomach and into my small intestine. A small, flexible scope was then extended up my duct and into my pancreas. A large cyst was found and drained. Before the procedure began, I was informed I would have to be placed on the hospital ventilator. Due to having issues in the past using hospital ventilators, I am always leery about turning off my ventilator and switching to a foreign machine. The anesthesiologist was extremely kind and very knowledgeable about ventilators. I trusted her; I allowed her to switch me to the hospital ventilator.

Within a week of having the procedure done, I noticed my sputum had changed. It now had a fluorescent hue to it along with a sickly sweet smell and taste. My heart sunk. I knew I had acquired another respiratory infection. I was fairly confident it was from the hospital ventilator and was a bacteria called Pseudomonas

A few weeks later, I went to the emergency department and was hospitalized. I was sick, but I had a clear chest x-ray, normal white blood cell counts and a low grade fever. A sputum culture was ordered. It came back positive for Pseudomonas. When the doctor informed me of the results, I was happy. See, I am sick. This is a new bacteria. I will be given antibiotics and soon be on the road to better health. The physician, however, believed differently. "This is a colonization. You do not have an active infection." I interjected, "But wait! Colonization means the bacteria is a normal part of my respiratory tract. I have NEVER had Pseudomonas in my sputum before. If I am colonized with Pseudomonas, I would have had it show up in my previous sputum cultures. I am not feeling well. Surely this is the causative agent." The physician dismissed my claim and said, "You do not have an active infection. You are not sick." The medical professional dismissed me home without any antibiotics.

Two weeks later, I was slated to undergo IVIG (intravenous immunoglobulin) treatment. I tried to come up with a reason why I should not have the IVIG, but nothing seemed to contraindicate the IVIG. Within 20 minutes of the IVIG being infused, my mast cells rejected the treatment. I developed an anaphylactic reaction. I was wheeled down the hall to the emergency department. I was given immuno-suppressant drugs and admitted to the ICU. In a few days, my health stabilized. I was given my last dose of immuno-suppressants around 11 a.m. I was discharged home in the afternoon. In the evening, I noticed I was very fatigued. I thought I was just tired from spending several days in the hospital.

Around 11 p.m. that night, I abruptly became extremely ill--violent shaking chills, high fever, confusion, nausea, pain throughout my body, etc. (For more details, click here) I struggled through the night. In the morning, my parents drove me to the large medical facility nearly 400 miles from our home. Once in the emergency department, I am informed I am being admitted to the ICU. I had a large hole in my lung due to Pseudomonas. During my stay in the ICU, the exact same doctor I had just two and a half weeks previously, who said my Pseudomonas infection was just a colonization, severely scorned me for having IVIG. "You have an active infection. IVIG weakens your immune system. You should have known better..." I really wanted to scream out, "Wait! You just told me 2.5 weeks ago I did not have an active infection!" But I refrained from pointing out the physician's error.

I spent 12 days in the hospital and acquired two additional bacteria. After a brief period of feeling better, I began to feel quite ill. Upon discharge, I was running a fever. My white blood cell count was elevated. I was coughing up copious amounts of blood. My doctor prescribed IV antibiotics; they did not seem to be working. I suffered through four days of worsening health. I finally decided to go to a local emergency department. My chest x-ray revealed the Pseudomonas was all over my lungs. I was admitted and spent more days in the ICU. Upon being released home, I am put back under the care of my doctor 400 miles away.

Since I was admitted to the hospital, his prescription for IV antibiotics was made void. My doctor decides to place me on a relatively newly approved drug. He submits the paperwork to the infusion company. I have to wait for them to process everything and get insurance approval. In the meantime, I look at the calendar. In two days, it will be Yom Kippur (the day of atonement). This is supposed to be the most joyous day of the year. After having a very turbulent summer and now fall, I wait eagerly for that glorious day, the tenth day of the seventh month on God's calendar. Oh, the day is going to be filled with lots of singing, prayer and happiness. I can hardly wait for the day to come!

(For the link to Part Two click here)

Saying so long to the 70’s

As I watch Rosh Hashanah services, I laugh when a rabbi says, “Say good bye to the 70’s. The 80’s are here.” This, of course is in reference to the start of God’s new year, which is the year 5780. The last ten years have been the 5770’s.

As I reflect back on the last ten years, it is amazing to review all the life changing situations which have arisen. Ten years ago, I was fighting to hold on to my life. My only diagnosis at the time was postural orthostatic tachycardia syndrome. I was assured if I made some lifestyle changes—a high salt diet, beta blockers and compression stockings—I would be on the road to better health. When I was given a medicine to help with my daily migraines, I suffered a stroke. It took several months to regain muscle strength and coordination. Despite my best efforts, my health continued to decline. I tried and tried to do everything possible to feel better, but the harder I tried, the sicker I became. I finally had to give up everything and go live with my parents.

For the next year I was bedridden. Any time I stood up, I blacked out. I often resorted to crawling on my stomach to the bathroom. The search for answers yielded nothing. My gastrointestinal tract was the next victim. My gall bladder became inflamed, infected and nearly ruptured before it was removed. My intestines stopped working. I first had a jejunum (intestinal) feeding tube. When that failed, I next had a PICC line and received IV hydration and nutrition. I was so grateful during this time, God lead me to the condition called Mitochondrial Disease. Now I finally knew what was wrong with me. The heartbreaking part was there is no cure. One can use supplements and herbs to support the mitochondria, but nothing will ever stop the disease. It is a chronic condition which will mostly likely continue to progress.

Skipping over the next five years which were filled with bowel obstructions, another stroke, continued muscle weakness and pancreatitis attacks, I suddenly developed difficulty breathing. I was assured it was just asthma. Two weeks later when I was in the emergency department in acute respiratory distress, I was told I needed to use a bilevel postive airway pressure (BiPAP) machine to help me breathe. Very quickly my breathing deteriorated. I soon was on death’s doorstep, desperately needing a tracheostomy and invasive ventilation. Thankfully, God moved a few mountains, and I was able to receive a tracheotomy and was started on invasive ventilation without many complications.

And that’s where my life has been for the last several years. I have continued to fight pancreatitis attacks, have had many anaphylactic reactions and have been plagued with nine or ten hospital acquired lung infections. I am still fighting one of those bacteria called pseudomonas which has kept me in the hospital numerous times this last year. (As I write this, IV antibiotics are being administered via an IV drip into my PICC line in hopes of finally eradicating this extremely resistant bug.)

The 70’s have been a time of great trial. I am praying the 80’s will be a time of great rejoicing, no admissions to the hospital and stable health. May 5780 be our best year yet! Shana tova (Happy New Year)!