What is done in secret, God sees

Earlier this year, a fellow Believer shared her painful story with me about a series of heartbreaking events. She has Mitochondrial Disease, and her family has a difficult time understanding her illness. In addition to all this, she has been waiting and waiting for her disability application to be processed. In the meantime, she is living on very little. She is in constant debt and continues to use credit cards to sustain her from month to month.

I was deeply moved by this woman's story. She was not asking for financial assistance. She just wanted prayer and emotional support. As I was praying for this dear warrior, God moved my heart. "You could pray for a blessing in your friend's life, or you could be a blessing." Without thinking about my next action, I asked for the woman's address. I wrote the girl a card encouraging her to keep on keeping on and enclosed a check to help lessen her burden.

I am a person of limited financial means. I save every penny and am scrupulous about any money I do spend. I always want to have something to give in the offering plate and greatly desire to help my local food bank. However, my monthly income is tiny. Hence, the amount I am able to donate is very, very small. I often wish God would bless me with great finances, not so I could buy a vehicle or live in a luxurious house, but so I could have lots and lots of money to give away.

God put into my heart the amount of money I needed to give this woman. I wrote out a check and knew if this was from God, He would provide a way. I did not tell anyone about my deed. When I donate money, I always try to do it in secret. I do not want to receive accolades or have my intentions be turned into one for evil. I only want God to see my actions.

A month later, I received an odd card in the mail. It had listed as both the sender and receiver my address. I looked at the postmark and saw the letter was sent from a local location. I opened the tightly sealed piece of mail. Inside, there was a card which was taped completely shut. It took some effort to cut through the sticky adhesive with a scissors, but finally I was able to open the note. Inside, there was a short message: "A gift of encouragement from the Lord." The message was not signed. Taped to the card was cash in the EXACT amount I had sent to my Mitochondrial Disease warrior! I was blown away! I was also doing a happy dance!

I have a secret rule about any money I receive as a gift. I give it away to charity. Although the money could be used to help pay for my supplements, food or medical expenses, I find the greatest delight in being able to continue the money's giving power by forwarding it on to another person or organization. Since I never have much to give, it is such a joy and blessing when other's provide the means for me to be able to offer charity.

During the entire card opening ceremony, my mom was incredibly curious about the card. (She was the person who had retrieved the mail from our mailbox and was subsequently enthralled by the mysteriousness of the letter.) When she saw the note and the money inside, she immediately said, "So, where are you going to donate that to?" A smile swept across my face and I nearly started crying as my heart was overflowing with joy. As hard as I try to do everything in secret, I was overwhelmed with happiness that my mom had noticed my actions.

Although many months have passed since receiving the card, the note still sits on a shelf in my closet. I look at it often and smile that someone took the time to send me such a beautiful gift of encouragement. I have the money sitting in an envelope. I am planning to give it away, but so far, nothing has captured my heart. The money was given out of an abundance of love. When the right time and situation arises, I will joyfully give the money away, and continually thank God for His endless mercies.

When in desperate need, God sends a man...an angel...a miracle

I sit in a crowded emergency department (ED) waiting room. People from every walk of life are crammed into an area far too small for so many sick and injured people. I have checked in to the front desk. The clerk seems unconcerned about my health. She tells me to wait until my name is called to go back to be triaged.

There are signs all over the front desk area stating the trauma center is closed. Six helicopters had delivered critically injured patients to the ED. Due to the extent of their injuries and the intense care needed, the trauma center is shut down. This translates into half the ED being closed. This comes at an incredibly inconvenient time. The ED is extremely busy with walk-ins and folks arriving by ambulance. And now everyone has to be funneled through just half the ED.

I am feeling extremely sick. I cannot put my finger on it, but something is wrong. I am losing muscle strength and coordination. My breathing is growing ragged and chaotic. I can feel my lungs are filling up with mucus. I am trying to cough up this sticky substance, but I am having very little success.

After waiting nearly 30 minutes and having yet to be triaged, a nurse enters the waiting room. She informs everyone the wait time is approximately eight hours to be seen in the ED. My heart nearly breaks upon hearing this news. Not knowing what else to do, I start praying to God. "Oh LORD, I am so sick. Oh LORD, I cannot wait eight hours. Oh LORD, please help me!" After a few short pleas to God, I end my prayer.

As I continue to fight to breathe, a homeless man approaches the check-in desk. Waiting for the clerk to acknowledge him, the gentleman looks around. His eyes widen when he catches sight of me. Instantly, he races to me, grabs my hands, bows his head and starts praying. He starts with the most beautiful rendition of the Lord's Prayer I have ever heard. He continues on by asking God for me to be seen quickly, for me to have fast relief from my symptoms and for me to receive treatment quickly. This man’s prayer is one of the most powerful prayers I have ever experienced. As the man is praying over me, the check-in clerk hurries over to the man and tells him to leave me alone.

In an instant, the man disappears. The check-in clerk has a brief conversation with the triage nurse. Then my name is called to go back to triage. The check-in clerk summons another associate. They both come around the check-in desk and help me gather up my ventilator and heater/humidifier. I am wheeled back to the triage area. As I leave the waiting room, I search for the homeless man, but I cannot find him amidst the myriad of people. The nurse takes my vitals. She inputs the information into her computer and checks on the bed availability. She tells me she cannot believe the homeless man was trying to hurt me. She informs me she is not going to send me back out into the waiting room. She does not want anything else to happen to me. She finds an ED room in which a patient has just been taken upstairs to a hospital room. She summons an aide and has her run back to get the room ready.

As I sit in triage waiting for an ED room, I am in disbelief. I know instantly what had happened. God had sent the homeless man into my life as an answer to my prayer. God changed the image of a man praying into a man trying to hurt a person on a ventilator. God heard this man's prayers and worked a few miracles. Everything the homeless man had asked for was being fulfilled. I have the distinct impression that this homeless man was sent in direct relation to my interaction with another homeless man six months prior. ("One who is gracious to a poor man lends to the LORD, and He will repay him for his good deed" Proverbs 19:17.)

Very shortly, I am wheeled back to the chaotic ED. (I am in disbelief that I have skipped the eight hour wait and am being seen so quickly. But, God knew I needed urgent medical help.) When the physician enters my tiny ED cubicle, his eyes grow wide in panic when he sees my physical appearance and vital signs. He immediately orders blood work. When the results come back, they indicate I am in the beginning stages of sepsis. Quickly treatment is started, and I am soon on the path to better health.

As I think about the homeless man, his powerful prayer and his sudden disappearance, Scripture floats through my mind: "Do not neglect to show hospitality to strangers, for by this some have entertained angels without knowing it" (Hebrews 13:2). Was this homeless man an angel; was he a messenger from God? My heart is too overwhelmed by God's abundant kindness to think too much about these events. I weep for God's kindness. If I would have had to wait eight hours in the ED waiting room, I am not sure everything would have gone so smoothly. I praise God over and over again for His abundant love and for hearing prayer.

(Link to Part One, click here)

An impulse to give: Setting the stage for an incredible miracle

As we leave the confines of the medical facility and begin our long voyage back to our home, we encounter a red traffic light. As my dad and I sit in the car waiting for the light to turn green, I see a man walking around the intersection asking for $8 to be able to spend the night in a homeless shelter. This incidence seems so usual and mundane. Lots and LOTS of people target the traffic intersections near the medical complex begging for money. But this man, this man seems so different.

Instantly, I feel the need to give this man money. I have a strong inclination I need to tell this man something. I quickly search my belongings looking for cash. (I rarely carry cash, but today, God had the exact amount He wanted me to give this man in my wallet.) The traffic light turns green before I can fish out the money and give it to the homeless man. My dad continues on our mission home, but as we are passing through the intersection he exclaims, "Oh, look! CVS. I have a coupon I need to use which expires today. Let's stop there." My dad swings into the pharmacy parking lot.

When my dad leaves the car and enters the store, I quickly exit the vehicle. In a hurry, I scurry away to the traffic light. I wait for the light to change before crossing the street to where the homeless man is working. I flag down the man. The gentleman walks over to me. I give him the money. He starts talking to me.

Unprovoked, he tells me he is a believer in Jesus. The man lays before me his recent life which happens to be a series of heartbreaking events. His wife had cancer. She passed away. Huge medical bills caused him to lose his house. He was part of a church. The church was helping him get back on to his feet. Evil speech spread lies about the homeless man which caused the homeless man to be kicked out of the church. At the end of his teary eyed monologue, the man chokes, "God once had a plan for me!"

Instantly, I grab the man and hug him. As I am pulling back from the embrace, I tell the gentleman, "God STILL has a plan for you!" Seeing my dad exit the CVS store, I say goodbye to my sweet friend and hustle back to the car. The man yells to me, "My name is Richard!" I wave and continue toward the car. I have prayed for this homeless man numerous times. I have also revisited this intersection (and nearby intersections) and I have never seen Richard again. I pray God helped Richard get back on his feet and get back in a relationship with Him.

As with so many stories, one could believe this was the end of this event. I gave Richard money. I prayed for Richard. I have never seen Richard again. The end. But God likes to continue stories. One small act of kindness changes my life six months in the future.

(Link to Part Two, click here)

Charity: Why I do what I do

Many moons ago, my mom came to visit me while I was pursuing my career. It was a gorgeous Saturday. My mom and I headed to the beach to allow the gently rolling waves to wash away the week of stress.

As we were relaxing under an almond tree, an elderly man approaches us carrying a guitar. We make small talk with the gentleman. He then proceeds to sing us a sweet serenade. The man's talent was quite astounding; he was an accomplished musician. At the end of the song, he asks us for money. My mom and I decline. The man leaves and goes on to the next couple sunbathing on the beach. My mom and I spend the rest of the afternoon at the beach. As the sun sinks below the horizon and produces a breath-taking scene, we decide it is time to leave the beach.

During the next week, my mom returns back to her home. I return back to my weekly grind of having too much to do and feeling as though I never have enough time. The following Saturday, I am grateful there is a health fair in a remote location in the mountains. Since I am one of the leaders of the organization which sponsors the event, it is expected I help. As always, I happily agree to the distraction. I gleefully step aboard a bus and travel over an hour into the mountains.

When I arrive at the health fair, there is a massive line of people waiting for their free health screening. I, along with my colleagues, set up the various stations. Soon it is time to allow the first patients through the registration desk. The day passes rather uneventfully. In the afternoon, the line begins to thin. I travel with the president of the organization on a tiny mountain road which winds through a small village. As we pass along, we tell residents about the free health fair.

As we approach the edge of the town, an inter-city bus stops. An elderly man exits the vehicle. My colleague immediately tells the gentleman about the health fair. As the man draws near, my breath catches. This is the same gentleman my mom and I saw at the beach last weekend. Instantly, I notice there is something wrong with the man. The sparkle is gone from his eyes; his skin looks very pale; he seems very confused and disoriented; his speech is slurred. Gone is his quick wit. He struggles to put words together to make a sentence. I ask the man what is wrong. He tells me he is a diabetic. Last week Friday he ran out of insulin. He did not have any money for any more medicine. (And I fill in the rest of the story. He caught a bus to the beach last weekend hoping he could get money from tourists and anyone else visiting the beach. He must have not been successful.)

With an extremely heavy and broken heart, I reach for the man's hand and gently cradle it between my two hands. (The gentleman is very unsteady on his feet. I am fearful he may stumble and will fall off the steep side of the small mountain road.) I tell the man I am taking him to the health fair. He does not protest. When we arrive back at the event, I skip the line and registration. I can see people are outraged this man just cut in line. I simply state this gentleman is my VIP. I take the man to the station which has the blood glucose monitors. I prick the man's finger and impatiently wait several seconds for the results. The man's blood sugar is so high, the monitor does not give an actual number. I know this man needs IMMEDIATE medical intervention.

Holding the blood glucose monitor with my right hand, I hold the man's hand with my left hand and lead him over to one of the local physicians. I explain to the doctor, "This is Mr. Smith. He is a diabetic. He ran out of insulin last week Friday and has not had any insulin in over a week. Here is the reading from the blood glucose monitor. Please give Mr. Smith the best possible care. He is one of our VIPs." With that, I left Mr. Smith in the care of one of the attendings.

How does this story end? I have no idea. After leaving the gentleman with the physician, I return back to my duties at the health fair. I pray Mr. Smith was able to get the medical attention he so desperately needed. I also know this entire situation was God-orchestrated. I just happened to meet Mr. Smith the week before at the beach. I witnessed his light-heartedness and amazing musical abilities. The following week, I just happened to be at a health fair in this man's hometown. And I just happened to meet Mr. Smith as he exited a bus. Having previously encountered the gentleman, I immediately discerned this man seemed very ill. Instantly I knew he needed urgent care.

The one thing I have taken away from this situation is this: if anyone asks me for money, I will give it to him. One never knows if the person also may be in a terrible financial crisis like Mr. Smith. My stony heart could have killed a dear man. I never want that to happen again.

Part Eleven: Is this the story that never ends?

This latest episode of me fighting off a bacterial infection all began with a physician not calling me to tell me the results of a sputum culture. The multitude of ensuing events almost seems incomprehensible. Not only did I have double pneumonia, the bacterium invaded my head and neck causing meningitis. From there, I wish I could say I received antibiotic therapy, and I was soon on the road to better health. Unfortunately, I cannot write this.

While hospitalized, it took a very long time to start feeling well. Finally, things seemed to turn around. My appetite and energy levels improved. I no longer slept all day. Hooray! Things are going well. For about 24 hours I felt as though I was improving. Then I started feeling ill again. I thought perhaps the bacterium I had developed resistance to the antibiotic regimen I was on. Since the downturn in my health was at the end of my hospital stay, I did not utter a word to my medical team. They had everything set up for me to get me discharged. They assumed since I was feeling better the previous day, I was still feeling well. When my blood cell count numbers returned to normal, all blood work was ceased. It was not possible to know whether my health decline was just from the stress of being in the hospital, or if they infection may be worsening.

When I arrived home, I diligently took both an oral and IV antibiotic. I continued to feel worse and worse. I called my infectious disease doctor's office to get a follow-up appointment. The next available appointment was in two months. When the antibiotics ended, I went to the emergency department. To my heartache, my white blood cell count was elevated. I was given one dose of IV antibiotics and sent home on an oral antibiotic. I was assured when the sputum culture results came back in a few days, I would be called if the antibiotic I was prescribed needed to be changed. When the results were updated to my patient chart, the emergency department never called. The antibiotic I was prescribed was NOT effective against the bacteria in my lungs. I now had five additional bacteria, which I must have acquired during my recent hospitalization.

While hospitalized, my peripherally inserted central catheter (PICC line) insertion site became infected. The bacterium soon found its way into my bloodstream and settled in my left arm and shoulder. Again, I attempted to find medical care, but my efforts yielded little fruit. The PICC line was pulled. I was able to get one intramuscular injection of an antibiotic.

I have continued to seek out medical attention, but so far, no treatment which covers all my bacteria has been initiated. I have numerous bacteria fighting each other in my body. My body is taxed almost to its limit every day. I am constantly trying to push pass fatigue, but more often than not, I fall asleep. I am hoping I can keep enduring until my infectious disease appointment. Moreover, I pray this time my infectious disease doctor agrees to devise a treatment plan, and a therapy option which will keep me out of the hospital.


(Link to Part One click here)


(Link to Part Two click here)


(Link to Part Three click here)


(Link to Part Four click here)


(Link to Part Five click here)


(Link to Part Six click here)


(Link to Part Seven click here)


(Link to Part Eight click here)


(Link to Part Nine click here)


(Link to Part Ten click here)

Part Ten: The truth finally exposed. My sputum culture was not normal.

A few minutes after 2 p.m., I press my call light. I need to get up and use the shiny silver toilet. My nurse enters my room and is helping me get unhooked from all my monitors. Before I am able to slip out of bed, an infectious disease (ID) fellow walks into my room. I am surprised to see this doctor. I had just seen her two weeks ago when I saw my ID doctor. If I would not have been in the hospital, I probably would have seen her again this morning when I attended my appointment with my ID doctor. I decide to forego my need to empty my bladder. I lean back in bed and hook myself back up to my monitors.

The fellow asks me about my symptoms. She asks me if I have/had a headache. I say, "Yes. And a stiff neck too." She then asks if I have had any confusion. Her words startle me. Headache, stiff neck and confusion. Meningitis!? No, that could not be...could it? (For the last several weeks, I have had a headache which has gotten worse day by day. Confusion spells have plagued my days, and most recently I have developed a stiff, sore neck. Yes, it seems, the bacterium caused meningitis.) The fellow goes on to say my sputum culture from two weeks ago was not negative, as I had been told. It was growing a rare bacterium. My ID doctor decided the bacterium was just a normal part of my respiratory flora (although this bacterium has NEVER been cultured from my respiratory tract before).

I feel as though I am in a free fall. A million thoughts and questions race through my mind. What!? I have a rare bacterium growing in my respiratory tract, and no one told me about it! How can this be? I have been lied to. My sputum culture was not normal. Why didn't my ID doctor call me with the results like he told me he was going to? Knowing I had this new bacterium, why did my pulmonologist say I was not sick at my appointment with her? Why were all my symptoms brushed aside? My head spins.

I ask the fellow the name of the bacterium. To my surprise, the bacterium has two names, and the fellow knows both of them: Chryseobacterium meningosepticum and Elizabethkingia meningoseptica. Being completely unfamiliar with both names, I focus in on the second name--Elizabeth something or another.

The fellow is frustrated a sputum culture was not taken while in the emergency department (ED). Now, I have been on antibiotics for two days. A sputum culture collected now will not be resulted for 4-5 days. Additionally, the sputum sample may not grow anything or may have a different antibiotic sensitivity report now that I have been on antibiotics. The doctor tells me they will probably treat my old pseudomonas infection and now also this new bacterium as they do not know which organism may be making me sick. She says she will make her suggestions and note them on my chart for my medical team.

When the physician leaves, I immediately pull out my iPad and search "Elizabeth gram negative". Immediately, the bacterium Elizabethkingia meningoseptica appears on my results page. I click on several of the links and start reading everything I can about this bacterium. Some fast facts: the bacterium is extremely rare. The bacterium causes pneumonia, meningitis and sepsis. It is mostly hospital acquired and is very deadly. (I read a case report about an outbreak affecting four patients. Three of the patients died.) The bacterium is extremely drug resistant. There are only five antibiotics which can be used to treat the infection. However, the bacterium being very drug resistant, may not be inhibited by these antibiotics. Most people die from this bacterium because they are not started on the correct antibiotics. Since it takes 4-5 days for cultures to be resulted, the infection may kill the person before the correct antibiotics are commenced.

When I read this last fact, I praise God I had a sputum culture taken two weeks ago. We have the results. I can immediately be switched over to the proper antibiotic treatment. Oh how blessed I am we do not have to wait 4-5 days for another culture to be resulted. As heart broken as I was about my ID doctor not calling me and not being told my culture results, I am at this moment praising God I am alive. I praise God I went to the ED. Who knew my lungs were harboring such a deadly bacterium...a deadly bacterium which could have easily killed me. Praising God I am still alive!



(Link to Part Eleven, please click here)

Part Nine: The doctor from hexx

After surviving the emergency department (ED), I think the worst is far behind me. I have a room. I have a call button. I should be soon on the road to better health. After being woken up by a resident on my medical team early in the morning, I am promised the attending will visit me later in the morning. And good to his word, the resident and attending show up in my room several hours later.

My attending informs me she is a nephrologist (kidney doctor) and does internal medicine one month a year. I look at the calendar. Drats! Today is the first of the month. That means she will be an attending on the medical team for the next 30 days. The doctor interrogates me about my medical history. She wants medical records on the spot proving my diagnoses. She disrespects my pulmonologist and criticizes my pulmonologist's medical decisions. This sends me off into a fury. How dare this woman insult another medical professional. How dare she show disrespect to one of her own colleagues. I immediately despise my attending.

The physician goes on and on how things in my medical past do not line up. For example, I have been to many medical centers over the years. Obviously, the doctor asserts, this is a red flag something is wrong. I am trying to cover something up. The doctor goes on and on about me not having my medical conditions, and she was going to prove it. She knows I am just faking everything.

I am absolutely livid at this point. I am grateful my mom has arrived in my room and is now backing me up. We both try to make rational talk with the doctor, but the doctor will have none of it. She tells me over and over again, she only does things by the book. (It's the odd school thinking of if your body does not read the book and present in a word-for-word fashion, then you do not have that condition. Many of my friends have died from this erroneous school of thought.)

Moreover, she asserts, if she cannot figure out what bacteria is causing my infection, she will send me home on nothing. She would rather have me sent home on no treatment than send me home on the wrong antibiotic. She did not want to be wrong. She did not want me to show back up in the ED sick from being on the wrong medicine. (I really wanted to point out to the doctor at this point, this was the DUMBEST and MOST arrogant and egocentric practice of medicine I have ever heard of! She does not want to be wrong. So, she would rather send a person with an infection home on no treatment than send a person home on a medicine which may be ineffective against the bacteria. If you do not treat the infection, the patient WILL still be sick. The person WILL return back to the ED or even possibly have bad complications and pass away before being able to seek medical attention. This doctor is practicing very negligent medicine. I immediately want her off my case.)

When the physician finally leaves, I am nearly shaking in rage. I tell my mom I am going AMA (against medical advice). I don't care if I am sick. I am not sticking around this hospital with this doctor from hexx on my case. I am going home!

My mom convinces me to stay. I agree to stay until 5 p.m. At 5 p.m. I will make the choice if I am going to stay another night. My mom departs for the hotel. I stew in my anger for several hours.


(Link to Part Ten, please click here)

Part Eight: Your new “private” room now with surround sound!

Around 11 a.m., my mom visits me in the emergency department (ED). I am exhausted form a night of little sleep. She brings me food. I eat some soup, but I am not very hungry. We pass the time, watching the clock on the wall tick off the minutes.

A nurse enters my room. She informs us they are going to be moving me to another ED room, one which has more privacy. I think this is odd as I usually am not moved once situated in the ED. The hospital has rules regarding being on a home ventilator. One of which is I am supposed to be in a room which has continuous monitoring of my vitals to a screen at the nurses' station.

When I am moved, my new "room" is nothing more than a tiny peripheral ED cubicle enclosed by curtains. The vitals monitor in the make-shift room is NOT connected to any exterior monitor. If any of my vitals signal an alarm on my monitor, the machine only beeps in my room. With having only curtains as dividers between the rooms, the area is extremely noisy. Conversations from adjacent rooms compete over each to be heard, machine alarms in rooms are going off and then there is the noise of people being moved through the ED on gurneys going to and from the ED. With all the noise, there is no way anyone would be able to hear my vitals monitor alarming.

Moreover, I am extremely sensitive to noise. Add to the noise a night without sleep and being very sick, my body cannot handle the stress. In no time, my dystonia roars its head. My muscles begin to spasm and twitch. My heart rate, blood pressure and breathing rate begin climbing higher and higher. Soon, I am shaking uncontrollably and my vitals monitor is blaring away, signaling my vitals are out of the normal range. Nothing happens. I have no call button to signal for my nurse.

My mom is in my cubicle. She is not sure what to do. I have never had a significant dystonia attack in front of her. What I really need is to get to someplace quiet. Ativan, a sedative, will also calm down my muscle spasms, but I try to avoid Ativan at all costs since it has bad side effects. My mom opens the curtain to my ED cubicle. Nurses peer into my room as they pass by. No one stops to ask if I am ok or asks if I need help. My mom is able to find my nurse and explain I cannot tolerate loud noise. The nurse tells my mom the hospital is full. This is the only place for me. My mom is not happy. I continue to worsen.

I feel terrible for my mom. She has never seen me in such an awful state. When I have dystonia attacks, I know what I need to do: get into a dark, quiet room. Noise, light, smells and vibration all contribute to an overload on my nervous system. If I can eliminate as many stimuli as possible, my body can better recover from the information overload. If I cannot find relief from all these stressors, every sound, light bulb, rumbling of a bed passing through a hallway, etc., all cumulatively add to up to too much chaos. My body cannot filter out the over abundance of information and responds by sending too many signals via my nervous system to my muscles. Spasming, twitching and very painful muscle contractions occur throughout my body. If the attack becomes severe enough, my diaphragm muscles seize up, and despite having a ventilator to breathe, my lungs are not able to inhale/exhale.

 

 My mom tries and tries to get help form my nurse. My nurse, however, is uninterested in helping me. After what seems to be an eternity, my nurse arrives at my bedside with a small dose of Ativan. The medicine helps my symptoms a tiny bit, but it also brings side effects. Ativan causes me to have hallucinations, which cause me to become panicked. This new anxiety only provokes more muscle spasms and rapid heart rate. My mom leaves my curtain open and treks back to the hotel to get her noise cancelling headphones. I am still having a high heart rate, rapid breathing and muscle spasms, but no one seems to care.

My mom returns with her headphones. By this time, my body is too exhausted to continue to violently react. My symptoms start diminishing. Shortly thereafter, a medical team arrives in my ED cubicle. They said they will be my team of doctors when I get to the floor. I should be transferred to a room very soon. After the doctors leave, my mom departs for the hotel. I continue to wait in my ED cubicle for a room. Eight hours after I first arrived in my new "private" room, I am finally transferred to a room upstairs. Eight hours of constant stress on my body leaves me in an extremely tired, sick state. As much as I want to go to sleep, my nurse continues to bother me with questions and administering medicine. Around 10:30 p.m., I drift off to sleep for a few hours.


(Link to Part Nine, please click here)

Making my first Thanksgiving meal

During my first year attending college, I decided not to come home for Thanksgiving. I only had a four-day weekend, and it would take two full days to travel home. Additionally, it was near the end of the term. In three weeks, I would be home for semester break. Not wanting to spend hundreds of dollars on travel to enjoy just two days with my family, I opted to stay on campus.

Not having anywhere to go for Thanksgiving, I asked the residence hall association for my dorm if I could cook Thanksgiving dinner for the hall (and have them foot the bill). They gleefully agreed. The association did not mind spending money on food if I was willing to cook the meal. At this moment in time, I had not cooked much. I could make instant mac and cheese, Ramen noodles and heat up hot dogs in the microwave. How much more difficult would it be to make a Thanksgiving Day meal? You just had to put the turkey in the oven, open some cans of veggies and heat them in the microwave and throw some brown and serve rolls in the oven for a few minutes. This should be a breeze! What could possibly go wrong?

I go the day before Thanksgiving to the grocery store to buy the necessary food items. I buy a fresh turkey because I did not want to deal with thawing a turkey. When I arrive back at my dorm, I store the refrigerated items in my resident hall director's room since he is the only person in the dorm who has a full size refrigerator. I tell the hall director I will be back the next morning at 9 a.m. to retrieve the food to begin making Thanksgiving dinner.

The next morning, I arrive at the residence hall director's room. He does not answer. I knock and knock. I wait and wait. Finally an hour later, he answers the door. He had been sleeping and then got up to take a shower. He did not hear me knock. When I get the turkey out of his refrigerator, I am horrified! The hall director stored the turkey in the back of his refrigerator next to the wall. This caused the fridge to run cold and partially froze the turkey!!! I grab all the food and run downstairs to the shared communal kitchen to begin making the meal.

I do not know what to do with a partially froze turkey. I turn on the oven and attempt to check the turkey for any giblets inside its cavity. However, the turkey has metal wiring which ties the legs together and makes accessing the turkey cavity nearly impossible. Since the turkey is partially frozen, I can not loosen the metal wire. I visually scan the turkey cavity for giblets. Not seeings any, I throw the turkey in the oven and hope it would get done quickly.

A resident assistant (RA) helps me prepare part of the meal. She knows how to make mashed potatoes. She prepares the potatoes. She then uses a metal potato masher to mash the potatoes. As she is mashing the spuds, she notices there are black flecks in the potatoes. She thinks it is odd as she did not add any pepper. She continues mashing and more and more "pepper" seems to magically be added to her dish.

Two hours after we were supposed to have had Thanksgiving dinner, the turkey is still in the oven. I am exhausted, and the dinner guests are very hungry and crabby. I take the turkey out and hope at least part of it is edible. When the RA empties the pot of her mashed potatoes, she realizes what the "pepper" is. It is flecks of Teflon from the cooking pot the metal potato masher scraped off as she was mashing the spuds. The RA asks me what she should do. I reply, "It's late. We do not have any more potatoes. Just add some pepper to them. No one will know the difference." The RA takes my suggestion and adds some pepper to the dish.

When we serve the meal, I am in charge of carving the meat. Thankfully, the basement has very dim lighting. People cannot see the turkey is very under cooked. I carve a little ways into the breast, and the meat is raw! I then start cutting from a different area of the bird.

I do not remember if anyone actually liked the meal. Everyone was very tired waiting so long for the turkey to cook. I ate only a little bit.

When the food is returned back to the kitchen area, the RA and I start cleaning the dishes and putting away the food. Since the turkey is now thawed, I can finally remove the metal wire holding the legs together. When the wire is removed, to my shock, there inside the bird is a bag of giblets!!! I remove the bag and place them in the pan along with the turkey. I place the turkey back in the oven for several more hours to finish cooking.

At the end of the experience, I learned many things. First, and foremost, give praise and thanks to those folks who prepare Thanksgiving dinner. It may seem like an easy feat, but many, MANY things go wrong. Also, never give up. Although this was my first time preparing a meal for a gathering of people, it was not my last. I have since made many meals for others and enjoy the challenge of making a large quantity of food. And lastly, laugh! Whenever I prepare a chicken or turkey, I ALWAYS check for giblets. If I cannot access them due to metal, plastic or string tying up the legs, I always get rid of these hindrances and put my hand into the bird to feel for any surprises inside.

May this day be blessed and be filled with lots of love, laughter and properly cooked food. Happy Thanksgiving!

Part Seven: People come, people go. I don’t want a scan.

After my traumatic health crash in the emergency department (ED), the rest of the night is rather uneventful. I have several roommates float in and out of the bed next to mine. A woman arrives via ambulance who had several seizures during the day. Although she was conscious in triage, she now is unresponsive. Eventually, she retains her faculties. As her body recovers from the seizures and seizure medication, the woman becomes frantic. She does not want to be in the ED.

“Get me out of here! I can’t be around sick people. Where’s my neurologist? He has been contacted that I am here. Why hasn’t he come to visit me?” The woman grows more and more agitated by the minute. When the female is told she is going to be moved into the hallway to make room for another patient, my roommate grows belligerent. The woman is rolled into the hallway. She subsequently leaves against medical advice.

Very shortly thereafter, another woman is rolled into my room. She has been stabbed in the leg. She was stabilized at another hospital and transported to this facility as it is a level one trauma center. A medical team surrounds the woman and quickly takes her medical history. A physician views the imaging done at the other hostpial. In a very short time, the woman is told she needs surgery. A nurse collects the patient’s jewelry. And in the blink of an eye, the woman is rolled out of the ED and into an operating theater.

My next roommate is a man who fell and broke a vertebra. The man has dementia. He cannot remember what the medical team tells him. He constantly cries out, “Help! Someone help!” When a nurse answers his pleas, she has to over and over again explain he has a broken vertebra. The patient complains he has to urinate. The nurse reminds him he has a catheter. He doesn’t need to go to the bathroom. Over and over again, this situation plays out throughout the night. The man constantly tries to sit up and tries to escape his bed. The bed alarm sounds; a nurse runs in to get him back in bed. Through this all, I am amazed at the patience of the entire medical team. They are kind and repeat themselves numerous times to the patient. Through all this chaos, I am able to sleep very little.

Around 4 a.m., I am taken to radiology to have a CT scan of my abdomen. I have objected to having the scan done for the last five hours. I am not feeling well, and I don’t want to be exposed to any more radiation. The overnight ED physician gets fed up with my excuses. She tells me I am going to have the scan. I am given a small dose of Ativan (a sedative) and am rolled just three doors down to the CT scanner. (I am shocked there’s a CT scanner in the ED!) A medical team slides me from my gurney to the CT bed. The scan is completed in a jiffy. I am soon back in my room.

Although I was very against having the scan, in the end, it was extremely useful. The CT scan of my abdomen included my lungs. The CT revealed I had diffuse infiltrates in my right middle lobe and both lower lobes of my lungs. The CT scan showed my pneumonia was much more severe and extensive than what could be seen on the chest X-ray. Again, I knew God was directing my care.


(Link to Part Eight, click here)

Part Six: Happy thoughts...please happy thoughts come to me

I sit in the emergency department (ED) shaking in pain, struggling to breathe and wishing someone would come soon! I can’t breathe. The pain! Oh! Everything is exploding in pain! Please someone help me!

My nurse had been in to visit me previously...how long ago was that? She informed me there was a shift change. The doctor would be in to see me shortly. The minutes tick by. No one comes. Oh please, someone come!

 

Finally, over an hour after shift change has occurred, a nurse in the hallway sees me through the open door to my shared ED room. She asks what is wrong. I can’t communicate. I point to my tracheostomy. The nurse asks, “You can’t breathe?” I shake my head yes. The nurse runs for help.

In an instant there are far too many people in my room. Fentanyl is ordered. My blood pressure is low. The doctor orders more fluids. A respiratory therapist suction’s my lungs. A doctor does an ultrasound on my abdomen and heart. A nurse puts a thermometer into my mouth. It reads 102.3 degrees. The pain is raging. I think I am going to die. My nurse gives me 50 of fentanyl. After a short while, my breathing starts calming down as my pain decreases. The medical personnel vacate my room.

As I sit in the bed, I can feel the fentanyl wear off. Oh the pain! It’s coming back! My breathing is growing ragged. My body starts back trembling again. Even though antibiotics are being administered, I can feel the infection raging out of control! I have a very elevated white blood cell count. The chest X-ray shows pneumonia.

“How long, LORD? How much more? Please send healing my way.” I attempt to read the Bible through pain. The book of Ezekiel is where I last left off my Bible reading. God chastens Israel for their disobedience. I allow the sorrow which wells up in my heart as I mourn for Israel’s lack of faith in God to melt with the pain radiating throughout my body. “Thank You, LORD, for your precious word. Amen.”


(For the link to Part Seven click here)

Part Five: Admit One: Pneumonia

As I wait for the emergency department (ED) physician to return with a treatment plan, I login to my online patient portal account. I click on my lab results page. Some of my blood work has been resulted. I scroll down to my white blood cell count. It reads 20.8 (A normal white blood cell count is between 4 and 10.). I am surprised my white blood cell count is so high, but I am also grateful that the blood work shows I am quite ill.

A short while later, the ED physician returns. He bluntly says, “You are going to be admitted.” In a feigned shocked expression, I exclaim, “Why? What’s wrong with me?” The doctor says, “Your chest X-ray shows you have pneumonia.” (I silently congratulate myself on correclty reading my chest X-ray. I also am relieved I will soon be on the path to better health.) The physician orders some more blood work. He tells me he noticed I look dehydrated. He is going to order some fluids. He also asks about my mitochondrial disease. “Do fluids help with mitochondrial disease?” I answer, “Yes.” He then asks, “Does sugar in the IV fluids also help?” I nearly fall off my gurney. This is the first time anyone has ever asked about giving me fluids and fluids with dextrose while hospitalized! I again answer, “Yes.” He says after he gives me some IV fluids, he will then switch me over to IV fluids with sugar. He then leaves and disappears into the ED chaos.

(Side note: The mitochondrial disease protocol for being in the ED/hospital is IV fluids and preferably IV fluids with dextrose (either D5 or D10 normal saline). Due to the stress of illness/injury, folks with mito need the extra support of IV fluids. Moreover, the dextrose helps maintain a constant blood sugar and helps the mitochondria produce energy while under stress.

When I first became severely ill, if I was not automatically placed on IV fluids, I would always ask for them. Usually the request was granted. One time I was even able to get D5 normal saline. As time has progressed, hospitals no longer place all patients on IV fluids. If you can swallow and are conscious, IV fluids are usually not ordered. Since this new protocol has taken effect, it has been very hard to convince doctors of my need for IV fluids while hospitalized. This is the first doctor I have ever had ask if I needed IV fluids or IV fluids with dextrose. The joy and relief that I will not have to force myself to eat and drink to maintain hydration and blood sugar levels makes my heart swell with gratitude. It is just another sign that God is directing my care.)



(For the link to Part Six click here)

Part Four: At the ED. Am I sick or will I be dismissed home?

After a few moments, the man at the emergency department (ED) check-in counter acknowledges me. He asks why I am here. I decide to not be straight forward. I don’t want to say I am having trouble breathing. My pulmonologist said I was not sick. If I indeed have a respiratory infection, I want to ED physician to make that call without being prompted. I am having abdominal pain. My pancreas is hurting. I know if I present as if I might have a panceratitis attack, I can get pain medication. If I say I have breathing problems, there is little chance of getting strong narcotics to help with my throbbing headache, stiff neck and generalized pain throughout my body. I tell the gentleman, “Abdominal pain.” He asks for my identification. He gives me a patient wristband and wheels me over to an outlet. He plugs in my ventilator and heater/humidifier.

I look around the waiting room and am relieved to see there are not a lot of people. I thank God that this means I will not have a long wait. A nurse calls my name. When she sees I am on a ventilator, she mumbles she cannot take me back to triage. She tells me to remain where I am. I wait about 30 minutes. In the meantime, other people are called back to triage. I notice that instead of using the front triage area, they are being taken down a long hallway to a far away room.

When my name is called again, the nurse triages me at the front station. She ask why I am here. I gasp for breath and state I have abdominal pain. Speaking causes me to cough. The nurse takes my vitals. The only reading I am concerned with is my temperature. I see the reading on the machine is 98.5 degrees. The nurse then sticks the thermometer into my mouth. It beeps. The screen on the machine never changes. It continues to read 98.5 degrees. I am fairly confident the machine did not take my temperature. I do not say anything as I know a fever with rapid heart rate and fast breathing will signal I am in distress. I will be pushed back immediately to the ED. I know God is directing everything. If the thermometer is not supposed to record I have a fever, it is God’s doing. The nurse scans her computer. The only open room is in the trauma center. She calls back to tell them I am coming on a home ventilator.

A medical assistant wheels me to the trauma center. As I enter the ED, I hear someone say, “What is she hear for?” Another voice answers, “Abdominal pain and shortness of breath.” The first voice says, “Not another medicine case. Why do they keep sending us medical cases?” The second voice responds, “She’s on a home ventilator. This was the only place available. We can’t leave her in the waiting room on a home ventilator.”

My ED cubicle does not have a bed. I am left in the hall while a gurney is commandeered. I sit in my wheelchair and cough up lots of thick yellow sputum. Medical personnel fly around me as they race from bed to bed. A male physician looks at me and asks the medical assistant, “What is she here for?” The medical assistant says, “Abdominal pain...” And before she can say anything else, the doctor interjects, “And shortness of breath.” (My rapid breathing is quite evident to the doctor.)

A bed swiftly arrives in the ED cubicle. I am wheeled into the shared double room and helped into the bed. (Before coming to the ED, I hid my PICC line under an Ace bandage. I did not want my PICC line to arouse any questions. My efforts were useless.) As soon as I take off my jacket, the nurse sees the Ace bandage. She asks, “Is there a PICC line under there?” Knowing God is directing everything, I say, “Yes.” She takes the bandage off and immediately collects blood from it. I am thrilled she is using my PICC line instead of poking me with a needle.

An ED physician starts asking me about my abdominal pain, but he is immediately concerned with my breathing. He asks me about my respiratory issues. He orders a chest X-ray, blood cultures, abdominal CT scan and fentanyl for the pain. I am in disbelief that I am going to be getting fentanyl. No one EVER gives me fentanyl, or I have to be screaming in pain for 12 hours before a tiny dose is given. This doctor is giving fentanyl without me asking or begging for it! Oh happy day!

I am given the fentanyl and am shocked I do not feel anything. Usually there is some sensation of the drug entering my system, but this time I feel nothing. The pain remains the same. Very quickly two radiology technicians are at my side preparing me for a chest X-ray. An X-ray machine attached to the ceiling is swung into place. A technician yells, “X-ray in use.” The machine hums and then beeps. My chest X-ray appears on a computer screen. I quickly scan the X-ray. It looks as though there is diffuse cloudiness in my right lung. Although I am a novice at reading X-rays, it looks like pneumonia.



(For the link to Part Five, click here)

Part Three: To go or to stay? What does the thermometer say?

When we arrived at the hotel, I am grateful to be away from the medical center. I eat a few bits of food, but I am very nauseous. My mom leaves to get supper and have her computer fixed. I collapse on the couch and prop my legs up on the wall. Oh how glorious it is to have the blood, which has pooled in my legs from sitting up for many hours, now return back to the rest of my body.

As I lie there, I ponder the doctor's appointment. My heart is broken. I feel so defeated. I am sick...so sick. But my physician said I was fine. Moreover, she said this would be a normal state for me as long as I have pseudomonas. I want to burst forth into sobs, but I am too tired to cry. I tell myself I will not go to the emergency department (ED). Furthermore, I will not stay to attend my infectious disease doctor’s appointment in two days. No, I will just sleep through the night and go home in the morning. There is no use seeking further medical treatment. My pulmonologist made it clear I was not sick.

I try to read the Bible to push away the thoughts raging in my head, but I cannot concentrate. My head throbs in pain. My neck is sore. I feel disoriented. I close my eyes, but sleep never comes. I feel as though my fever has broke. I have shed my winter parka and am now only wearing a fleece jacket. I tell myself I must be feeling better.

Around 7 p.m. I get up. I tell myself if I have a temperature of less than 101 degrees, I will not go to the ED. The thermometer beeps. It reads 101 degrees. I silently moan. “Oh, this is not good. I still have a fever. I need to seek medical treatment.” I decide I am too sick to not do anything. I resolve to go to the ED. I lie back down on the couch.

Fifteen minutes later, my mom calls. She informs me she is on her way back to the hotel. I know I should gather some items together for my trip to the ED, but I am too tired and too defeated to move. A short time later, my mom arrives back at the hotel. I reluctantly get up and start the process of packing for the ED and probable stay at the hospital. My mom and I drive to the ED. She wheels me to the check-in desk and leaves. All too soon, it is time to face the medical world. After five glorious months away from the hospital, it is now time to re-enter a place of sleep deprivation and constant vigilance.


(For the link to Part Four, click here)

Part Two: 102.6 degree fever. You are not sick.

We arrive at my doctor’s appointment a few minutes ahead of time. I see an odd sight: the waiting room is packed with people. I know the physician must be running behind. As I sit and allow my heater/humidifier on my ventilator to moisten my lungs, I can feel the thick, sticky sputum in my lungs spring back to life.

(My heater/humidifier requires an electrical source for power as it does not have a battery. This means, while traveling, my lungs are filled with cold, dry air. This causes my airways to become ridgid. My sputum becomes too thick to cough up or move around my lungs. Once my lungs are rehydrated, my airways open up, and my sputum thins out, allowing it to move around my lungs. This causes me to cough. And soon, my lungs are free and clear from the accumulation of sputum, and my breathing returns back to normal.)

As my lungs absorb moisture, lots and lots of mucus begins rumbling around my lungs. Soon, I am violently coughing, and coughing up lots and lots of “junk”. Thankfully, the wait to be called back to a room is only about 40 minutes. I am grateful to be leaving the crowded waiting room. A medical assistant takes my vitals. My blood pressure is normal. My heart rate is 109 beats per minute. The medical assistant notices I feel warm. She takes my temperature using a forehead thermometer. It reads 96.8 degrees. I tell the woman it is not an accurate reading. She finds an oral thermometer. This device reads 102.1 degrees. The assistant copies down my vitals to my medical form and leaves.

A short while later, one of my pulmonologist’s fellows enters the room. I have had this fellow before. She is rather rude. I tell her of my recent health decline. She tells me it’s nothing to be concerned about. She listens to my lungs. She tells me there is nothing wrong. She leaves. A short while later, the medical assistant returns to take another set of vitals. This time the oral thermometer reads 102.6 degrees. My blood pressure is 142/83, and my heart rate is 136 beats per minute. She leaves. The medical assistant returns with the forehead thermometer. This device reads 98.3 degrees. Clearly there is an issue with the forehead thermometer. The medical assistant reports both temperature readings to the fellow.

After what seems to be an unusually long delay between seeing the fellow and seeing the pulmonologist, my doctor finally enters the room. She seems to be tired and in a negative mood. She tells me all my symptoms are due to my chronic pseudomonas infection. I am just going to have to live with it. My mom interjects, “But she has a fever of 102.6 degrees!” The physician says I have a temperature because I am wearing a thick jacket. She continues to state when my temperature was taken without my jacket it was 98.3 degrees. I tell the doctor the readings were taken at the exact same time. One was using the forehead thermometer, and the other was using the oral thermometer. Obviously there is an issue with the forehead thermometer. I go on to say I also took my temperature using my own thermometer. It gave me a reading of 102.1 degrees. I have a fever. The doctor dismisses the information.

The pulmonologist goes on to say she briefly reviewed the notes from the infectious disease doctor. She also called the doctor. They both were in agreement my symptoms were due to me being colonized with pseudomonas. Despite coughing my head off, coughing up lots and lots of sputum and fighting so hard to breathe I can barely say more than a word or two without gasping for my next breath, my doctor tells me I am not sick.

At the end of the appointment, she finally says, “Well, if you think you are sick, you are free to roll across the street (to the emergency department).” I am against going to the emergency department (ED) because my physician, who knows me and my medical case, says I am not ill. My mom, on the other hand, insists I go. By this time, my head is spinning and is throbbing, my body is screaming in pain and I am becoming extremely confused. I tell my doctor and mom I need to go to the hotel and lie down. Then maybe later I will go to the ED. My physician says she will have the fellow call over to the ED and let them know I will be coming. We part ways. My mom and I head for the hotel.


(For the link to Part Three, click here)

Part One: When minor symptoms become worrisome

For the last several weeks, I have felt very ill. I have had a cough which has progressively gotten worse, fatigue, horrible headaches, neck pain and confusion spells. I go to my infectious disease (ID) doctor searching for answers. When a chest X-ray comes back as normal, I am assured I will be contacted when my sputum culture results come back from the lab. I wait and wait. The doctor never calls.

I am not terribly worried. I have a follow-up appointment with my pulmonologist in a few weeks. Two days after that appointment, I have an appointment to see my ID doctor. I know everything will be figured out. My pulmonologist and ID doctor know each and work together. They will have a plan to help me.

The night before my appointment with my pulmonologist, I attend Bible study. I feel very off-balanced. I cannot focus or recall facts to mind. I get lost in the middle of my sentences. I want to scream; I want to shout, “I am so lost and confused. Someone help me!!!” I do my best to get through the session.

When I get home, I need to finish packing for my doctor’s appointment. I roam around the house, lost in a fog. I know I need to make food for the trip. I know I need to place my bags in the car. The tasks seem so difficult. I manage to do the best I can and collapse into bed. Despite being completely exhausted, I cannot sleep. Finally around 2:30 a.m., I fall asleep. A few short hours, my alarm startles me awake. It’s time to get up and get on the road.

I am surprised when I sleepily move about the house I feel ok. I don’t feel great, but I feel better than I did the night before. When we begin our journey, I can feel my body is starting to act up. My airways feel tight. I start coughing. I continue to tell myself I am feeling fine. As the trip continues, my head aches. I become nauseas. I become extremely cold. I put on my thick winter parka and winter gloves. My body begins to warm up. Soon, I am in a cycle of being very hot and then profoundly cold. I think to myself, “Well, if I am going to be sick, at least I am going to see my doctor. She will be able to help me out.” An hour before my appointment, I find a thermometer. It reads 100.8 degrees. My heart sinks. I don’t run fevers unless I am extremely sick. I dread my day may not end in a relaxing night at the hotel.


(For the link to Part Two, click here)

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.