No love lost

Recently, as I was scrolling through my Facebook newsfeed, I stumbled upon an obituary of one of my middle school teachers. This perhaps was one of the first times when I saw someone had passed away that I did not feel sorrow. I reminded myself I needed to pray for the man's family as it is hard for anyone to lose a husband or a father. But a broken heart and teary eyes did not come my way.

One might ask why such a cold, callous heart? Well, this teacher was much like all my teachers in elementary and middle school. They scorned, mocked and ridiculed me for striving for excellence. The teachers would find the smallest fault and penalize me either in my grade or verbally. How dare I achieve great things. Who did I think I was accelerating in my classes?

When moments came to honor students for their successes, I was always passed over. It did not matter what I did, I was always told other students deserved the recognition more than I. At the end of the month when a student in each class was named "Student of the Month", my name was never called. Out of all the kids in my class, I was the only one to never be honored as "Student of the Month". Most students received the award at least twice in their tenure; some children received it every year. What did I do wrong? Why did I not deserve any recognition? I could never understand this. I achieved near perfect marks in my classes and traveled the country competing in various competitions. I was always told, "It's not fair that you have traveled to so many places. It is not fair that you have been honored by many organizations." So, I had to endure my punishment by being shunned by my school.

After the Oscars, I read a post about Lady Gaga being hated by her classmates for wanting to be famous and establish a music career. She was scorned and ridiculed for wanting to achieve greatness. Lady Gaga turned this hatred into her motivation for creating an all-inclusive fan base; it has also been the foundation for some of her biggest hits. I could not help but wonder when reading her story if all people who strive for excellence suffer the same shame and mockery by their fellow classmates and teachers. Why must someone's drive for greatness be a source of hatred? Is it jealousy? Are folks trying to level the playing field for others by tearing down one student to build the self-esteem of the rest of the class?

So, as I reflect back on my experiences with my deceased teacher, I find myself not losing any love over his death. I am actually relieved that this man can never cruelly treat another child again.

Bam! HELP!!! Am I awake or sleeping?

As I lie in my bed, every fiber of my body aches as my 102.5 degree fever continues. The previous night, I got almost no sleep as I was continually awaken by violent coughing spells. I have spent most of the day in bed, too tired to move and too tired to sleep.

It is 6 p.m. My dad is outside on the patio cooking supper. I hear a loud crash. I swear I hear my dad yell for help. I have an image flash in my head that my dad fell and hit his head. I don’t move. I know my mom is sitting near the patio door, and she can help. I listen. I don’t hear anything more. I then hear the patio door open and hear my dad’s footsteps in the kitchen. I praise God that whatever happened, everything must be ok.

Around 8:30 p.m., my fever finally drops to 102.1 degrees. I know I need to eat and drink as I have had little food and liquids during the day. I get out of bed. As I enter the kitchen, I hear the door to the garage swing open. “HELP!!!” It’s my dad screaming for assistance. I rush to the garage. My dad has his hands on his head. There is blood dripping down his face, and blood is splattered all over the garage.

I grab a rag from the utility room and give it to my dad. I start looking at his head but then realize this is a horrible idea. I have pneumonia caused by pseudomonas. Pseudomonas LOVES to infect wounds. The last thing I want is to unintentionally give my dad my pseudomonas infection. I immediately zip off to my room to grab some disposable gloves. In a flash, I am back by my dad’s side. I grab an ice pack from the freezer and tell him to go to the bathroom. I wipe off some of the blood on his face. I know head wounds bleed a lot; I am not distracted by all the blood. I examine his head and am relieved to see his head is in pretty good shape. My dad is alert and able to hold a conversation. I can tell he is in shock, but overall, I am praising God my dad seems to be ok.

When my mom sees my dad and hears that he fell head first off a ladder, she loudly asserts, “You are going to the ER right now!” I agree with my mom. I have no idea how much trauma his head or neck might have endured during the fall. The last thing I want to happen is for my dad to go to sleep tonight and never wake up due to a complication from the fall.

There are two hospitals one can visit depending which direction you drive from our house. My mom, knowing I have visited both hospitals asks, “Which hospital should we go to?” I immediately blurt out the name of the hospital. I not sure where the words come from; I am pretty sure God put the words in my mouth. My parents leave for the ER.

After their departure, I am a bit disturbed about the day’s events. Was I dreaming at 6 p.m. when I first heard my dad fall? Was this a vision from God? Was God trying to warn me about the future? Whatever the case may be, I praise God I was able to spring into action. I also praise God for suggesting the hospital.

As soon as my dad enters the ER, he is taken right back to triage. Before my dad even enters his ER room, the doctor is examining his head in the hallway. The doctor is very proactive and quickly orders tests and treats my father’s head wound. All the tests come back clear. There are no complications. He is discharged home. Once again, I feel as though God put a giant hedge of protection around my dad. His fall could have been so much worse. I praise God for the incredibly fast medical attention. I praise God for sparing my dad’s life. Amen.

The sweetest thing from the most loving mom

This last week, I have been carefully planning my consumption of food. Usually, I do not have to be mindful of what I eat. If I need something, my mom travels passed the grocery store almost daily and can easily stop in to get me food. This last week, however, my mom has been very sick. So, I have been cautiously consuming my food, trying to make it last.

Yesterday, I was nearly flat out of many things. I intended to go to the grocery store myself, but I ran out of energy. I lamented to my mom last night that I was running low on food. I mentioned the items I needed, but I said I could go a while longer. I would just have to be a bit creative with what I ate.

This morning, I opened the fridge, and I was a bit dumbfounded. I saw a new package of mushrooms sitting in the fridge. I thought, “Well, perhaps my dad bought them yesterday when he went to his doctor’s appointment. It would be odd for him to buy me food, but stranger things have happened.”

As I scanned the fridge, I nearly started crying. I saw gift after gift of amazing food! Baby carrots, romaine lettuce, yogurt, iceberg lettuce...it felt like Christmas morning! I exclaimed to my mom, “Did you go shopping!?” “Yes,” she said, “I was feeling better and went this morning. I hope I got everything you needed.” I wanted to run up to her and give her a big hug and kiss...but since she is still coughing and blowing her nose, I kept my distance and said, “Thanks!” from afar.

As I greedily ate precious food gift after precious food gift today, I was overwhelmed with my mom’s love. Oh how blessed I am to have such a loving mother! God has truly overfilled my cup by giving me such an amazing mom!

Great escapes

Before becoming ventilator dependent, I was usually placed on the regular medicine floor. This meant that I did not have monitors hooked up to me to record my blood pressure, oxygen levels, heart rate and heart rhythm. I was not tied down to machines and could often flee the confines of my hospital room without anyone noticing...and many times I did just that.

Being a patient greatly stresses me out. God always seems to understand this, and many times my hospital room was at the end of the ward or at the end of a hallway near a bank of elevators. Knowing that on the regular hospital ward, the nurses and nursing assistants only came to my room about once every four hours, I could time my escapes and not have anyone detect my departure. One time I walked with my IV pole about a mile from my hospital room using various walkways which connected the vast medial center. When I arrived at the farthest reaches of the complex, I found a small convenience store which sold organic chocolate. The cashier looked at me in amazement when I made my purchase clothed in a hospital gown and lugging an IV pole with me. "You are a VERY long ways from the hospital! How did you get all the way over here?" the young male cashier asked. I replied, "I walked."

Another time, I was extremely hungry. The hospital food service did not have organic food. Someone went to the store to accommodate my needs. For over a week, I was fed nothing more than ground up organic chicken and organic apple juice. Being hospitalized with pancreatitis attacks, eating just protein was a very bad idea! The chicken kept provoking more pancreatitis attacks. I finally stopped eating the chicken. I became extraordinarily famished. I thought I was going to eat my arm from sheer hunger.

After the nurse disconnected me from my IV to allow me to shower, I put on street clothes and hid my hospital bracelet and IV beneath long sleeves. I fled my room and found the elevator. I searched the directory and discovered the cafeteria was located in the basement. I praised God when I found a small cafe which sold a scant amount of organic food. I found an organic quinoa salad and greedily made my purchase. I then found a seat in the cafeteria and scarfed down my food. I lingered for a while and enjoyed the freedom of not being a patient. When nearly an hour passed, I feared my nurse might detect my absence. I reluctantly returned to my hospital room. My escape was never discovered.

God and Google save the day!

Nothing in the world makes my pulse quicken more than trying to guide physicians on my medical case. I attempt to be respectful and polite. But, what should I do when the information the doctor is telling me is incorrect? Thankfully, in this world of technology and internet, it is not difficult to bring up webpages and essential information which can help guide my physicians.

Today, as I am sitting in a hospital room trying to get all the details of my pseudomonas infection sorted out, a physician walks into my room. She tells me I am currently taking Ertapenem. I am a bit baffled. “No, I am on Meropenem.” The doctor tells me it’s the same class of drug, and I will probably be discharged home on Ertapenem. I grow worried. I do not ever remember reading about this drug as a treatment option for pseudomonas.

After the doctor leaves, I open Google on my iPad. I research Ertapenem. My heart nearly stops when I read, “Ertapenem does not cover pseudomonas.” What!? Do the doctors not know this? How can I be sent home on an antibiotic which does not cover my bacteria? I start panicking. My breathing increases, and I feel my heart pounding. I suddenly remember to pray. “Oh LORD! Please hear this urgent prayer. Please send me home on Meropenem. Please let the doctor know Ertapenem does NOT cover pseudomonas. Oh LORD, please don’t let this all fall apart. Please send me home on the correct antibiotic.”

About an hour later, the pulmonologist on my case enters my room. He briefly visits and says I am going to be sent home on antibiotics. He mumbles the antibiotic name to the physician assistant standing in the doorway. I ask the physician, “Which antibiotic did you say?” The doctor replies, “Ertapenem.” I tell the doctor Ertapenem does not cover pseudomonas. The physician states Ertapenem is in the same drug class as Meropenem. They cover the same bacteria. I again say no, and I get out my iPad and start asking Google for help. In a minute, I have Stanford University’s School of Medicine webpage open. Under the drug class carbapenems, it states in bold, “Ertapenem does NOT cover pseudomonas.” The doctor asks for the author of the webpage. I scroll up and point to Stanford’s information. The physician then says, “Well, if it’s good enough for them, it’s good enough for me. I learned something today. Let’s send you home on Meropenem.”

I breathe a sigh of relief. The doctor listened to me! More importantly, I am going home on Meropenem! I am grateful when the doctor leaves. My stomach is in knots, and I feel very nauseas. I hate challenging people, especially physicians. Who am I to question someone’s medical authority? I rejoice to God for hearing my prayer. I rejoice to God that He gave me the insight to research Ertapenem. “Oh, LORD. Please help me get rid of this infection. Please continue guiding me in the way I should go. Thank You for hearing my prayer. Amen.”

Shake, shake, shake. Dystonia.

It is another Friday, and another Friday afternoon run to the hospital. My pseudomonas infection is greatly impeding my health. During my infectious disease appointment, my doctor tells me to go to the emergency department to get IV antibiotics and get admitted to the hospital to have some tests run.

I am praising God that despite many people in the waiting room, a security guard demands I get medical treatment and pushes me back to the triage area. I wait a while for a room in the emergency department to be ready for me, but eventually I am wheeled back to a tiny, shared emergency room. The chaos of several nurses, a respiratory therapist and a physician descends upon me. I am ask too many questions by too people. My head spins. I am grateful when the room clears, and I have space to curl up under the blankets. A respiratory therapist enters the room and gives me two rounds of albuterol through a nebulizer. When the treatments are finished she leaves.

About 30-45 minutes later, a nurse returns and starts an IV. An IV drip slowly infuses my body with an antibiotic. The nurse leaves. The nurse reappears an hour later. My first IV antibiotic is finished. I am then given a second antibiotic. The nurse scurries away to another emergency department bed. Very soon, I feel very unwell. I have this feeling of impending doom. My jaw begins to shake. My hand muscles start having very small spasms. I can't immediately put my finger to it, but something is wrong. A nurse from an adjacent bed walks in the room. I get the nurse's attention and mumble I am not feeling well and am having tremors. (I am shocked at how slurred my speech is.) The nurse tells me I was given an albuterol treatment, and this is just a side effect. I note the time and think, "I was given albuterol two hours ago. I wouldn't just suddenly develop symptoms now." Since my tongue feels thick, it is very difficult to speak. I remain silent and allow the nurse to disappear into the emergency department chaos.

In the next few minutes, my small, slow tremors develop into violent, uncontrollable shaking spells. My mouth is clamping shut. My hand muscles spasm tightly closed. My breathing is becoming labored. My heart is racing into the 140's. My rapid heart rate is causing my heart rate monitor to alarm. I do not have a call button or any other way to signal for a nurse. A half hour goes by. Finally a nurse checks in on me. I attempt to explain I am having a reaction. She shuffles off to find a doctor. More minutes pass. At last, a doctor and some resident doctors round at my bedside. My jaw is spasming so hard, I fight with all my energy to convey I think I am having a reaction to the antibiotic. The doctors talk. They try to discern if I am having an anaphylactic reaction. I try with all my might to convey that it is my muscles and not an anaphylactic reaction. The doctor orders a dose of Benadryl. I have to wait 15 minutes for the drug. The antibiotic is discontinued. Between the Benadryl and stopping the antibiotic, my symptoms lessen to about half the severity.

I endure another hour of uncontrollable shaking before I am able to convince the nurse to ask the doctor for more Benadryl. Another dose is given. My symptoms barely improve. I know the extent to which Benadryl will help my dystonia reaction has been exhausted. I desperately need benzodiazepines. I ask the nurse for more Benadryl, but I am told I have to wait another hour for any more drugs. My body is exhausted. Shaking and shaking and shaking for several hours has used up all my energy. I know if I do not do something soon, my body will go into a bad mitochondrial disease crash--seizures, stroke, heart attack, an anaphylactic reaction are all just a few heart beats away.

I suddenly remember I have a bottle of lorazepam (a benzodiazepine) in my backpack. I wonder, "Can I reach my bag? Do I have enough coordination to open my backpack, retrieve the bottle of pills and dispense one pill without spilling the tablets all over the emergency room floor?" I know I have no choice. I use every last ounce of energy to slide toward the end of my bed. I reach and reach and finally snag a corner of my backpack located on the back of my wheelchair. I am able to grasp a zipper pull and clumsily yank open my bag. My hands are violently shaking, but I manage to find my bottle of lorazepam. I hurriedly open the bottle without taking the bottle out of my bag. I am constantly watching the doorway to my room for any medical personnel. I quickly snatch up a tablet, close my pill bottle and zip up my bag. I pop the pill in my mouth, and instantly it dissolves. I take a small sip of water from a cup on my beside table. I wait for the drug to take effect.

Twenty minutes pass. I am so relieved my tremors are subsiding. A technician from radiology appears at my bedside. He wants to take me down to have a CT scan. I am grateful and praising God I took the pill when I did. Otherwise, there would have been absolutely no way I could have remained still for the CT scan. By the time I get to CT and am transferred to the CT scan table, another ten minutes have passed, and my tremors have all but disappeared. On my way back to my emergency department room, my nurse meets my bed in the hallway and says, "See, you are all better. There's no need for any more medicine." I nearly start crying and again praise God. There is no way I could have waited any longer for symptom relief. No one seems to understand how energy draining it is to have a dystonia attack. No one understands how fast relief from the uncontrollable shaking is essential from preventing any further complications.

When I return to my emergency room, I wish the lorazepam would make me fall asleep. I feel so ashamed of having a reaction. I just want to curl up under the blankets and become invisible. I know this reaction will be noted on my chart. I know for the rest of my emergency department visit and subsequent hospitalization, this reaction will be mentioned. I do not want to relive this experience. I do not want to be reminded of my body's hypersensitivity to drugs and how complicated my medical case is. I push these thoughts aside and thank God I made it through another dystonia episode. I thank God my symptoms have resolved. I thank God I had a bottle of lorazepam in my backpack. This disease can be such a challenge. I am grateful God helps me through each crisis. I rest my head on a pillow and wait for a bed to open up in the medical unit upstairs.

Munchen for a reason

During a recent hospitalization, a physician arrogantly strolls into my patient room and proclaims, "I know all about your medical case. I read through all your medical records and know your doctor." I am a little taken aback by this man's boldness. How could anyone read through years and years of medical history? Of course, I knew he could not. Furthermore, I have only just started visiting this hospital in the last 18 months. And even in this short timeframe, I have been a patient at six other hospitals.

Immediately, the clinician tells me my bacterial respiratory infection is only a virus. I must have picked up a virus someplace. Viral infections are extremely common. My mom interjects, "But she has been sick with this infection since AUGUST!!! Does a viral infection last six months!?" My mom continues badgering the doctor during the entire interaction as he makes erroneous observation after erroneous observation. Finally, the physician tells me he is dropping me from the pulmonology service. The medical team will follow my case.

After discharge, I read on my notes that this doctor questioned my mitochondrial disease diagnosis and believed I had Munchausen Syndrome. Additionally, he did not think I needed to use a ventilator to breathe. I was flabbergasted to read his comments! Really!? Munchausen Syndrome. I am pretending to be sick; I am making up my respiratory muscle weakness!? I have faked my carbon dioxide levels to be sky high. Wow, I must have some superhuman strength to be able to tell my body to not get rid of carbon dioxide and to retain this poisonous gas in body until I am nearly at the brink of death.

I sigh and want to cry. If only this doctor knew how much I hate being a patient. If only this physician understood how agonizing it is to attend doctor's appointments or go to the emergency department. I avoid medicine. I avoid medicine to the point where I have nearly died because I did not seek medical attention.

Whenever I enter the emergency department, I have to fight with all my might to not run for the nearest exit. I often clutch my ventilator and bed rail to physically prevent myself from bolting out the door. I am grateful doctors often sense my anxiety and give me sedatives to calm my nerves. Although the medicines often make me very sleepy and cause hallucinations, many times I prefer this option than having to endure the hours and hours of stress during my emergency department visit. How could anyone enjoy being poked and prodded and asked endless questions from nurses and doctors? How could anyone want to spend precious hours of his life stuck in these windowless rooms of chaos?

It seems when medical professionals don’t know what’s wrong with you, they cast you off to the psychiatric world of medicine. It’s easier to proclaim you are crazy than to admit they lack the medical knowledge to treat you.

Trying to be well

Running, running. Chest pounding. Breathing ragged. Trying, trying to get rid of this pseudomonas infection. Turn to the left, door slammed. Turned to the right, brick wall. Flee to the emergency department. “Help! I can’t breathe!” Antibiotics administered. Admitted to the hospital. Oh, let this hospitalization end well.

Days pass. Things are going well. Time for discharge. Before my eyes, everything falls apart. “How can this happen again!” No one contacts my insurance to get approval for my outpatient antibiotics. I need home health, but that is another near impossibility. Time passes. My patience grows thin. Out the door I go, empty-handed. The infection is not completely treated.

Days pass. The infection comes back. My health deteriorates. I wonder why I even bother wasting my time trying to get medical attention. Tears stream down my face. I am exhausted. I feel so defeated. I just want to be well. Why is God making this so hard? I know all trials come from God, but I beg Him for a reprieve. Perhaps some day, some day soon, God will heal my pseudomonas infection. Until then, I keep on keeping on, trying to persevere through each day.