A Series of Unfortunate Events

I am trying, really trying to remain upbeat and optimistic, but sadness fills my soul. I have been having great pain and discomfort with my tracheostomy tube. After much research and trial and error,  I have discovered I am sensitive to silicone, the very material my trach tube is made of. After several nights of little sleep due to shortness of breath, coughing and breaking out in hives, I decided to ask the medical world for help.

My mom drove me nearly 400 miles back to the large medical facility I visited at the beginning of the month. My emergency department experience was great...but after that everything fell apart. My assigned ICU pulmonologist was clueless about trachs. I had a scope procedure done by the ear, nose and throat department, which was not done with any sedation or numbing agents. Thirty-six hours after the scope procedure, I woke up not being able to breathe through my trach; it was completely clogged with thick mucus and blood. After nine hours of continuous saline nebulizer treatments, the mucus and blood became thin enough to suction out. (This was a bad sign. Thick mucus and especially the appearance of blood usually signifies there is an infection.)

The following day, another pulmonologist was consulted. He suggested doing a full bronchoscopy. So, later in the day, I had a full bronchoscopy...one of the worst experiences of my life. I explained before the procedure I do not tolerate lidocaine well; it causes me to go into a coughing fit which can last up to five hours. I explained I needed to be completely sedated for the procedure, otherwise I would be coughing the whole time. I explained a few other things I learned after having a bronchoscopy done at the beginning of the month. The doctor acknowledged everything I said. When the procedure started, they used excess lidocaine to numb my throat and lungs. I immediately went into a bad coughing fit. The doctor then used a drug I have really bad reaction to, which worsened my breathing and coughing. The doctor said he was not going to use any sedation, but after ten minutes of intense coughing and gasping for breath, the doctor finally gave me a small dose of fentanyl. I coughed and gagged through the whole procedure. The doctor promised he would pull out my trach to look at my trachea to see if the ulcers which were discovered earlier in the month had healed. He also said he was going to change out the trach. Because I was coughing so much, the doctor aborted touching my trach tube. So, the whole reason for having the scope done--to see if the ulcers had healed or worsened and to change my trach tube out with one which does not contain silicone--was not done.

The doctor was excited because when he went down my trachea, he found an infection. He cultured the infection to determine if it was bacterial or viral in origin. I was not surprised he found an infection. I am pretty certain I acquired it several days before when the ENT department performed a scope and most likely reinoculated me with a dormant infection I had acquired at the beginning of August. Moreover, when the ENT department did their scope, NO infection was found in my trachea. The pulmonologist was convinced that all my symptoms were due to this infection and not a reaction to the silicone in my trach tube. My case was switched from the pulmonology department to internal medicine. No further investigations regarding my trach tube and a possible sensitivity to the silicone were done. Once the cultures from the infection came back, I was sent home...still having the same symptoms and now with a bacterial infection.

I am trying to not cry, trying to not be upset, but it is so hard. "Lord, I know this is all a test and all part of Your plan, but please, send relief soon. I am so tired. My trachea is so sore; my breathing is so labored. I am running out of energy to fight through each day. Guide me in the way I should go. Amen."

God will provide: A seven cent donation

Several years ago, my pastor announced at church the sad news that his daughter and her family had been robbed. The family had moved across the country to start a church. The church was growing quickly in size. One Sunday, while the family was away at service, thieves broke into their apartment and stole a number of items including electronics. The husband worked in information technology. His computer was his livelihood. The pastor announced they would be taking up a love offering for the family at the next church service.

Deeply moved by this story, I prayed to God. "Lord, I really want to help out, but I am so poor. I have so very little money. I want to give this family money, but what should I give?" The amount of twenty-five dollars kept popping into my mind. As much as I wanted to give $25, I did not have much more than that in my possession. Giving $25 would leave me almost completely broke. Day after day I kept praying about the amount to give. And every day, $25 kept popping into my mind. I joyfully, but reluctantly gathered the $25. At the next service, I gave the money as a love offering.

When I returned home from church, I checked my emails. There sitting in my inbox was a notice from half.com. I had sold a book I had posted for sale six years before. The amount the book sold for was $24.93. I was completely dumb-founded! I had completely forgotten about the book; I had completely forgotten I had it listed for sale. For six years, not one person bid on the item. But today, while I was at church giving a donation to a needy family, the Lord directed someone to buy my book.

Tears of great joy and overwhelming ingratitude filled my eyes. I had so desperately wanted to give a love offering, but I was in torment as to how financially broke this offering was going to leave me. Yet, when I trusted that the LORD would provide and gave almost all that I had, the LORD, in His abundant goodness, blessed me with hidden financial resources. I joyously sent up many prayers of appreciation to God. "Oh, thank you Lord! Thank you, thank you, thank you! This offering which should have cost me $25 is now only going to cost me $0.07! Oh Lord, I can afford to give seven pennies!" Since this day, I never worry about money. When someone is in need, I pray to God and ask how much I should give. Time after time, God always provides the resources needed to give...and often the resources come from the most unexpected places!

"Look at the birds of the air, that they do not sow, nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not worth much more than they? And who of you being worried can add a single hour to his life? And why are you worried about clothing? Observe how the lilies of the field grow; they do not toil nor do they spin, yet I say to you that not even Solomon in all his glory clothed himself like one of these. But if God so clothes the grass of the field, which is alive today and tomorrow is thrown into the furnace, will He not much more clothe you? You of little faith! Do not worry then, saying, 'What will we eat?' or 'What will we drink?' or 'What will we wear for clothing?' For the Gentiles eagerly seek all these things; for your heavenly Father knows that you need all these things. But seek first His kingdom and His righteousness, and all these things will be added to you." (Matthew 6:26-33)

Unexpected Gifts

These last few weeks, I have been really struggling--struggling to breathe, struggling to sleep, struggling to understand why I have been so sick. As I have been wallowing in my suffering, I have been determined to keep living my life as best as I can. Despite extreme sleep deprivation, I get up early on Sunday mornings to go to church. Throughout the week, I use what little energy I have to write blog posts and to write a weekly Bible study. I feel like these efforts are useless. Does anyone really care if I attend church? Does anyone really care if I do Bible study? As I have been in the depths of despair about the utility of my life, God has so graciously intervened with unexpected gifts.

The last couple weeks, I have received messages, emails and cards from many friends, some of whom I have not spoken to in quite some time. Always, their words have filled my heart with love and have brought tears to my eyes. The little things I have been forcing myself to do have been making a difference in other people's lives. Each word gives me hope and gives me courage to keep on keeping on. Although I know my health struggles will continue perhaps for the rest of my life, it is truly uplifting to know that God sees everything. And in His abundant goodness, He has sent numerous people into my life to let me know my efforts have helped others.

A mess of emotions

Of late, I have been a mess of emotions. My breathing continues to be burdensome and after a brief improvement with a smaller tracheostomy tube, all my symptoms--severe shortness of breath, coughing spells, feeling as though I cannot breathe, etc.--have all come back. I am so tired from not sleeping. My shortness of breath and coughing spells continually wake me up and/or prevent me from sleeping. My rib muscles ache from frequent coughing spells; this pain too, prevents me from sleeping.

I am trying to remain optimistic. Perhaps all these symptoms are just from an allergic reaction from the silicone in my tracheostomy tube. There is another tracheostomy tube available which does not have silicone in it, which I tried this week. I had a severe allergic reaction to it and had to switch back to using my silicone tracheostomy tube. What if my body just does not like tracheostomy tubes? Where do I go from here? The ulcers in my trachea continue to cause much pain and swelling. Of late, the ulcers have started producing a foul smell. Will they ever heal?

I am patiently waiting for September. After nine months, I have finally been able to get in to see a mitochondrial disease specialist. I am unsure if she will be able to help my tracheostomy troubles. Do I wait and pray she will be able to help? Do I try to see another pulmonologist? The fear of being admitted to the hospital lingers in my mind. In three months, I have spent 28 days in the intensive care unit. My body is exhausted; my brain is on hyper-overdrive. The thought of having to endure another minute in an intensive care unit drives me nearly to tears. The thought of IVs, blood work and other testing makes me sick to my stomach. I just want to be able to breathe. I just want to be able to sleep. I am trying not to be upset that after struggling for so long, I continue to have so many breathing issues. I just keep praying, keep asking God for direction, keep asking God for relief from my symptoms. "Lord, I am tired. Send relief soon. Amen."

Humble yourself in the sight of the LORD and He shall lift you up

Many years ago as I was grocery shopping in my wheelchair, a woman approached me. "Hello. My name is Susan. How are you?" I cordially answered her question. The woman continued to talk to me for a few minutes. She told me how proud she was that I was able to go grocery shopping all by myself. What a big accomplishment it was! "Your parents must be so proud of you!" She made many condescending remarks and talked to me as though I was a three year old. I knew instantly this woman thought because I was using a wheelchair, I must have diminished mental abilities. (This happens frequently. Why people equate using a wheelchair with having mental impairments has always remained a mystery to me.) In my zeal to show this woman my intelligence, I tried using large words and tried sounding as intelligent as possible. However, it did not matter what I said, the woman continued to talk to me like a three year old. Every time I went grocery shopping, it seemed I almost always saw Susan at the store. I was always polite and tried not to be annoyed by her condescending remarks.

One day, I met my friend's mom, Kathy, at the store. I was talking to her when Susan suddenly appeared. Susan exclaimed, "Oh, Kathy, you know this precious girl too!? Isn't it amazing she can come to the store all by herself? She can get her groceries and then go through the check-out lane all by herself. What an accomplishment! I am sure her parents are so proud of her!" Upon hearing Susan's words, Kathy looked at me in bewilderment. The words, "Is this woman serious!?" seemed to flash across Kathy's face. Thankfully, Kathy, being quick-witted, knew immediately how to set this woman straight.

Kathy: "Oh, yes Susan, this young lady is quite talented. Did you know she went school with my son?"

Susan turning to me: "Oh, how wonderful! You were able to go to school!"

Kathy: "Yes, she tutored my son and graduated high school as valedictorian."

Susan turning to me: "Oh how wonderful you were able to attend high school and were able to graduate too. That must have been quite an accomplishment...what!?" (As if waking from a distant dream, Kathy's words seem to ring in Susan's ears. Susan turns quickly towards Kathy.) "Did you say she tutored your son and graduated as valedictorian!?"

Kathy: "Yes, Susan, she is quite a talented young lady."

Susan: "So that means she is smart?" The color drained from Susan's face as she realized she had completely misjudged my mental abilities. Immediately, Susan stopped talking to me like a three year old and started talking to me like an adult.

I remained friends with Susan for a couple years until our lives drifted apart. During the time when Susan treated me like a three year old, I repeatedly wanted to yell and scream at Susan that I was not mentally challenged. But, I refrained from acting like a child. Instead, I clung to God's Word: "Humble yourself in the sight of the LORD, and He shall lift you up" (James 4:10). True to His Word, on that day so long ago, He did lift me up. Ever since this experience, I never try to correct people's misconceived ideas about me. Instead, I try to stay calm, remain humble and let God deal with the people.

Point of Clarification

The last few months I have shared some of my health experiences, and I feel as though these experiences have been misconstrued. The main reason for sharing my journey is to provide hope and comfort to all those in need. I do not intend for these blog entries to elicit sorrow or sympathy. Rather, I hope to spread understanding. It is often so hard to understand other's health struggles. I simply share to help those on their own journeys find strength and hope.

When you see a person using a ventilator, I hope you see the life saving device which allows the person to breathe easier. When you see a person using a wheelchair, I hope you see a mobility device which allows a person more freedom to explore the world. When you see a friend or loved one attend church or show up at Bible study, rejoice in the abundant blessing it is for that person to be well enough to leave home.

Every day is a choice--to keep on going forward and to let God's light shine or to give up and hide God's glory. As hard as some days are, I will always continue to keep going, never allowing God's light to grow dim. Some ask, "Why must we suffer?" I never ask this question. Instead, I know God has a plan to use all situations to glorify Him. I hope however He decides to use my life, I will be able to spread hope, love and faith in Him. "...This sickness is not to end in death, but for the glory of God, that the Son of God might be glorified by it" (John 11:4).

Dear Lord. Thank You!

As I am still waking up from sedation, I am overjoyed! My ICU doctor is also an amazing pulmonologist. She formulated a possible cause for my symptoms and execute that plan this afternoon. My tracheostomy tube was too long and too wide for my trachea. It was causing ulcers to form around my tracheostomy tube, and the tip on the tracheostomy tube was digging into my trachea. The pulmonologist changed the trach tube to a smaller size diameter and a shorter length.

Although I am less than two hours post-op, the pain in my throat is SO MUCH less! I no longer have a stabbing pain in my back. I can eat without pain and without developing severe coughing spells. I no longer feel the urge to rip the trach tube out of my throat. Although still under sedation, my breathing is down to 28-32 breaths per minute, a SIGNIFICANT improvement from the 54 breaths per minute I was experiencing prior to the procedure.

I am still not 100% over this hurdle. My trachea needs time to heal; there is no guarantee my trachea will heal or will heal properly. Some cultures and lab work still need to come back from the lab clearing me from some infections and other complications. Praying my coughing spells and severe shortness of breath stay away. As the sedation wears off, only then can these two symptoms be assessed.

But for now, I am praising God! Praising God for leading me to an amazing doctor. Praising God for the amazing medical staff at this medical center. Praising God for relief from my symptoms. Praising God for hearing so many prayers from so many people. Thank you all for all your love and prayers. "Thank You God for allowing Your servant to live another day. Another day to study Your word. Another day to proclaim Your abundant glory! Hallelujah! Amen!"

One last effort

After exhausting the medical knowledge in my community, I have traveled 400 miles in one last desperate attempt to find a remedy for my breathing issues. My doctor's appointment yesterday yielded no answers. The pulmonologist told me to go to the emergency department at the hospital to get care.

This morning, exhausted from the previous day's 7-hour road trip and long doctor's appointment, I tried to muster as much confidence and grace as possible. Here I was, standing at the entrance of yet another emergency department. Apprehension and a bit of fear filled my soul. How much poking and prodding were they going to do? Are they going to scratch their heads and send me right back home? If there is any place which could solve my respiratory issues, this is it! If nothing can be found to cause my symptoms, I will have to resolve myself that nothing can be done. Instead, I will just cling tighter to my favorite Physician, Jesus. If He chooses to heal me, GREAT! If not, I shall try to glorify God through all my suffering.

As I sit here coughing and struggling to breathe in the ICU, I look out my windows--a foreign hospital with foreign doctors, nurses and staff I see through the large glass sliding doors; I look outside to see an unfamiliar landscape. I thought it would be exciting to take a mini vacation...but I so dearly miss home. I love looking out my window and watching the birds. I love watching my mom's garden grow. (I love eating her delicious produce!) I love seeing my church family every week...I LOVE watching the children grow and become sweet young adults. I know. I know! I have only been gone two days...but with all my recent hospitalizations, I feel like I have been away from home for a very long time.

So, with the hope in my mind that this will be my last hospitalization, I am trying to remain upbeat and positive. For example, I almost started laughing before.  I told the nurse I had to go to the bathroom. I saw a tiny sink in the tiny ICU rectangle called my room, but I did not see a toilet. Suddenly, the nurse opened the cabinet under the sink and out popped a toilet! Since there are only sliding glass doors, I boldly did my job while a nurse held up a sheet. Yeah, there were about 8-10 people milling around, but when you have to go and have a chance to go, all concern of someone seeing me sitting on a tiny silver toilet evaporates. Also, it is good to know there is a toilet in my room. I was concerned I might have to use a bedpan. YUCK!!!

Wishing everyone a great week!

Happy Bloggiversary!

Happy First Birthday to my blog! Wow! I cannot believe I have continued to write and post to this blog for one whole year! I also cannot believe how much my life has changed in this last year.

I know it is no coincidence that this anniversary date is on the very day I am traveling 400 miles to seek out one last ditch effort to find a cause for my breathing issues. I also know it is no coincidence that today is Tisha B'Av (the ninth day of the month of Av) on the Jewish calendar. This is the saddest day of the year for Jews. It is a day of great sorrow and fasting. Today is the day ten spies came back to Moses to report the land of Canaan was full of giants and was not a place for the Jews to dwell. God cursed the nation of Israel by making them wander in the wilderness for forty years until all the men 20 years and older died in the wilderness (Numbers 13-14). Since this time, God has continued to curse this day for the Jews. On the ninth of Av, the first temple was destroyed by Nebuchadnezzar. On the ninth of Av, the second temple was destroyed by the Romans. In 1290 on the ninth of Av, the Jews were expelled from England. On the ninth of Av in 1492, the Jews were exiled from Spain. Moreover, World War II and the Holocaust, historians conclude, was actually the long drawn-out conclusion of World War I that began in 1914. Germany declared war on Russia, effectively catapulting the First World War into motion, on the ninth of Av.

As I reflect back on all these tragedies, I cannot but hope that God will one day turn this day of fasting into a day of feasting. In Zechariah 8:19, God declares the following: "Thus says the LORD of hosts, 'The fast of the fourth, the fast of the fifth, the fast of the seventh and the fast of the tenth months will become joy, gladness and cheerful feasts for the house of Judah; so love truth and peace.'" (The month of Av is the fifth month on the Jewish calendar.)

Although I know this is a yet future promise God has made to the Jews, I cannot but pray that God will turn this ninth day of the month of Av into a day of gladness and joy for me. I am running out of energy to keep fighting for each breath. I am growing weaker and weaker each day. "Please, Lord, send wisdom and insight to my medical team. Please, Lord, provide a guiding light to reveal the cause of my breathing issues. Thank you for allowing me to share one year of my life on this blog. Thank You for allowing me to grow my faith and love for You more and more. Thank You for being by my side every day of my life. Amen."