The search for the fountain of life

Recently, a number of my friends have found out some discouraging information about their health. It seems, all their reactions are the same. "This is devastating. My life is coming to an end. I must act quickly. There isn't much time left." I see great fear and sorrow fill their hearts and minds. I see the anguish on their faces as they reflect on the things they may not be able to do in their life because their death is near.

As I listen to person after person, the same thought rings in my mind. "How is your life different today than it was before you received your medical report?" A doctor's opinion does not change one's destiny. A lab result does not guarantee a day and time of death. And yet, it seems person after person expresses the same dark, lamenting attitude that this medical report is their final verdict. Their search for the fountain of life has ended. Their death is eminent.

I feel much compassion for these people. I know how hard it is to come to terms with a new diagnosis. However, I also become very frustrated. Life does not end when a fellow man gives his opinion about your health. Your life, beginning and end, is set by the great Creator. When He says you live, you live. When He says you die, you die. There are few things which are certain in this life--death is one of them. Everyone in the history of the world, with the exception of Enoch and Elijah, has died. Even our Lord and Savior, Jesus, died! I guess I am a bit baffled why people take the news from a doctor with so much gravity when everyone knows his life will end in death. 

Can God miraculously heal us? YES! Can God decide today you are going to die when you slip and fall in your shower? YES! Does God decision to keep us alive depend on our blood cell counts or pathology reports? NO! God does what He wants when He wants. Why do we lose this perspective?

In 2016, I lost a very dear friend of mine, Milly, to Mitochondrial Disease. Her death made me realize Mitochondrial Disease can and does kill people. I witnessed how Milly's death affected her family and friends. I decided I needed to drastically change my life. I needed to live each day as if it was my last. I tell people I love them as much as I can. I send notes of thanks and wish folks a happy birthday. I try always to live my best life today knowing that this might be my last recorded day on earth. Although I still grieve Milly's death, I am thankful God used her life to change mine. I am grateful God allows me to live another day on earth, another day to love the LORD and to share His love with the world.

As we head into another year, my prayer is that people live each day with the anticipation that tomorrow they will die. I know this is a bit gruesome for some people to grasp, but if you knew today was your last day, what would you do differently? Tomorrow may never come. Change your life today.

Christmas Eve fail

As the afternoon is turning into evening, I have the urge to go to church. It is Christmas Eve. It is tradition. I would love to go to my regular church. However, due to very limited seating and a large number of guests who attend, one must show up an hour ahead of time to get a seat. Additionally, the service is very short. It lasts around 30 minutes. I opt to go to a different church in which I can arrive right before the service and enjoy an hour of worship.

I visit the webpage of a church located right down the street from me. A couple of my friends attend that church. They have nothing but praise to say about the services and preacher. I note the start of the service and am happy to see it is a candlelight service. Imagines of soft piano music and gently flickering candles float through my head. I am excited to have found a place to worship on Christmas Eve.

I arrive a few minutes before the start of the service. I grow a little bit nervous when I see guitars, keyboards, drums and other electrified instruments on the stage. I do not see a piano. I grow worried. The service starts with an elder welcoming everyone to church. Then, a group of about ten people bolt for the stage. They all plug in their instruments and start rocking and rolling away. I attempt to remain in the sanctuary; however, my heart is starting to race. I flee to the closest exit and get as far away from the noise as possible. I look at the order of service. There are only two songs before the preacher delivers his sermon. I decide to wait for the noisy ruckus to end and make my way back into the sanctuary.

(Side note: I am extremely sensitive to noise. I can tolerate piano music and singing. However, anything which uses amplification (such as guitars and keyboards) and creates a pounding sound (such as drums and bass guitars), I develop severe symptoms. My heart often races, my breathing becomes ragged, my head spins, my ears ring, my muscles start contracting in wild episodes which look as though I am having a seizure, etc. It only takes a few seconds of amplified sound to send my body into a tailspin. As soon as I am exposed to this noise, I know I must flee immediately or suffer a bad health crash. I always have earplugs with me and use them any time a microphone is used to lessen the stress of the noise on my body. I research events and try to evaluate if I might encounter any noise which would cause my health to deteriorate.

In this case, I become very frustrated with myself. When a church advertises a candlelight service, I just assumed it meant a solemn service filled with soft singing and piano music. I never would have imagined a rock band (or as the church called it a "praise" band) would blast away the service on their instruments. I become very grief-stricken. This is not a church service. This is a rock concert. I wish the rest of the world would understand that it would be of great benefit it they specified what type of music they were intending to use during their services...but like so much of my life with Mitochondrial Disease, no one understands how things such as sound can greatly affect my health.)

I am excited when I re-enter the sanctuary. Here is going to be a glorious Christmas message! The preacher gives a short recap of the Christmas story. Then he says we should be like the wise men. When we encounter Jesus, we should not leave His presence the same way we came. The sermon ends. I am a bit dumb-founded. That had to be one of the shortest sermons I have ever heard. Before I know it, the praise band members are scaling the stage steps to rock away the rest of the service.

I quietly leave the church with a heavy heart. I fight the tears that want to escape my eyes. I feel so defeated. I have been feeling quite ill this last week and spent precious energy to attend this service. But it seems once again my illness and the world clash. When I arrive home, I listen to the book of Isaiah. I allow God's words to wash away my sorrow and fill me with much hope. Perhaps tomorrow will be a better day...and next year, I plan to have my own peaceful worship service at home.

At a crossroad...

It is nearly noon, and my dad and I are making the long 400 mile drive back from a medical appointment. Before hopping on the freeway and leaving the confines of the big city, my father spots a CVS drug store ahead. “Oh! I have a coupon I need to use which expires today at CVS. I am going to stop,” exclaims my dad. He eases into the right-hand lane to be able to make the turn into the CVS parking lot after the intersection.

As we wait a few seconds for the traffic light to turn green, I catch a glimpse of a homeless man walking up and down the intersection. I read his sign. “$12 pays for one night at a shelter. I have cancer and am homeless.” Immediately, I feel a desperate need to give this man money. (It is cold, so cold. I cannot bear the thought of this man having to spend a night on the street.) I frantically try to get my wallet out, but the traffic light turns green. We zoom away and turn into the CVS parking lot. My dad parks the car and scurries off into the store. I know I have but a few brief minutes to find some money and give it to the man.

I search my wallet, and to my astonishment, I have cash! This is a rarity as I usually pay for everything with a credit card. But for some unknown reason, there in my wallet is cash and is the exact amount God put into my heart to give this man. I snatch up the money and hurry off to the intersection.

It takes a while for the light to turn and for me to wave down the homeless man. But, eventually, I am able to gain the man’s attention. The man comes over to me, and I give him some money. The man is very grateful. I talk briefly with the man, and he scolds me for not wearing any gloves. I chuckle a bit. I point to my tracheostomy tube and explain I need bare hands for my ventilator, etc. The man’s eyes grow wide as he realizes I need a ventilator to breathe. It was as if he had a sudden revelation that I was not just some rich girl giving him money out of a guilty conscience but that I had medical needs myself, and this money was highly treasured.

The man starts crying. He then goes on to tell me his wife had cancer and passed away. The situation took a tremendous toll on him physically and financially. He believes in Jesus, and a church was helping out. Something happened, and the church cut off their help and kicked him out. He has been struggling to get through every day. The gentleman sobs, “God once had a plan for me...” Overcome with emotion, I give the man a hug and tell him, “God still has a plan for you.”

We exchange a few more words. As I turn and hurriedly make my way back to the car, the man yells, “My name is Richard!” I wave and thank God for this information.

As my dad and I make the long journey back to our home, I keep praying and asking God to richly bless Richard with a place to stay, with a church family and with the resources to get back on his feet.  I pray this intersection—this crossroad—in Richard’s life will help him draw closer to Jesus. I also thank God for placing in my heart the need to help this man out. It was truly a life changing experience meeting this gentleman.

Praying without ceasing for Richard...may he be safe and warm tonight.

A tale of two poverties (Part Two)

It is nearly Christmastime, and the ten o'clock news comes on the television. The news reporter says what a joyous Christmas it will be for a local family. They will be warm tonight.

The news story begins: A five year girl had an assignment to write what she wanted for Christmas. Her list included just three items--a ball, a blanket and food. When the girl's teacher read her request list, she was moved to act. The teacher organized a blanket drive to collect blankets for this girl and for the other children in her school who were in the same financial situation. The school collected around 50 blankets and distributed them to area children. They were not expensive, fancy blankets. Rather, they were small, cheap fleece blankets mostly likely purchase for around $5 from a discount store.

The news reporter visits the five year old girl's home. She lives in a run-down trailer. Inside, the tiny shack is desolate. Not a single toy can be seen anywhere. The five year old, her seven year old sister and her mother sit on a thread-bare dilapidated couch. The reporter interviews the girl's mother. The mother is wearing a faded old sweatshirt with frayed cuffs and neckline; she appears to be quite cold. She says, "I am so grateful for these blankets." (Camera pans to the two girls each shivering beneath their own small fleece blanket.) "We only have one blanket we all share at night." (Camera pans to a ragged old mattress lying on the ground a few feet from the couch. One twin sized thin blanket neatly covers the mattress.) "We only have one small space heater which never gets warm enough to heat the house." (Camera pans to a tiny old beat-up space heater chugging away trying to emit heat. I cannot help but notice that despite conducting the interview inside the woman's home, the news reporter is wearing a long, thick wool jacket and leather gloves.)

The mother continues, "These blankets are perfect. My girls can use them at night to keep warm. They can also use them in the morning as they wait for the school bus outside in the cold. The girls do not have jackets." Tears of gratitude well up in the mother's eyes as she thanks the community for their generosity. She is overjoyed her family has been so blessed. The story ends.

As I sit reflecting on this story, tears stream down my own face. I wonder, "What about the other items on the girl's list? Who asks for food for Christmas? Who asks for a blanket? Who asks for a single ball?" I know this child must be truly hungry and cold to ask for these items. From the lack of toys in her home, she also must desire a ball to entertain herself and/or to play with her sister.

I reflect back to the children at the Boys' and Girls' Club in Chicago. Each of these children received hundreds of dollars worth of gifts, and luxuriant gifts for their mothers. This little girl and her sister received $5 blankets. The mother was given nothing. This five year old desires just the basic necessities of life--food, clothing and simple amusement. My heart weeps as I think about the great disparity in the USA. One "poor" child asks for the latest and greatest video gaming system. Another destitue child just wants a full tummy.

Not knowing what else to do, I take the money I received for Christmas and give it to my local food pantry. I may not be able to help this child in particular, but perhaps I might be able to help another child, another family have food for Christmas and in the year to come. Praying this child and all those in similar situations are warm and fall asleep with full stomachs tonight. Amen.


(Link to Part One click here)

A tale of two poverties (Part One)

Many years ago, a friend of mine helped organize a Christmas gift drive for her local school. The children at the institution were mostly living in poverty. The drive was a success. After the event, the woman sent out a YouTube video the Boys and Girls Club put together regarding Christmas and poverty-stricken children in Chicago.

The premise of the video was the children were asked what they would like for Christmas. The items they desired were Nike shoes, a desktop computer, a gaming station, etc., etc. After the children were asked what they would like, they were then asked what they would like to give their mother for Christmas. Most stated they wanted to give their mom some piece of expensive jewelry such as a diamond ring or diamond tennis bracelet. One child in particular said he wanted to give his mom a lot of gold jewelry.

Each child was presented with the gift he desired and the gift he wished to give his mother. The climax to the story--the child was told he could only choose one gift. He could either get a gift for himself or select the gift for his mother. Almost all the children choose the gift for his mother. Of course after the child picked his gift, all the children were told how wonderful they were and that for their good behavior, they would actually receive both gifts. The child celebrated. The child's mother was called in and told how exceptional her child was for being so selfless in choosing to give the parent the gift and foregoing his own gift.

There were many hugs and some tears. Everyone felt warm and fuzzy. Everyone seemed to be rejoicing that despite their poverty, it was going to be a joyous holiday season. I, however, was disheartened by the entire episode.

While watching these children, I could not help but notice all of them were clothed in appropriate winter clothing which was free from tears and stains. Most of the children had on nice button-down shirts, thick wool sweaters and/or other clothing which looked as though it had been recently purchased from a department store. The mother who liked gold jewelry walked into the filming room covered in gold jewelry--gold teeth, gold earrings, layers and layers of gold necklaces, gold bracelets and gold rings. The woman must have been wearing several thousand dollars worth of jewelry. I kept thinking to myself, "If you are poor, how can you afford so much jewelry!?"

When the movie ended, I was left with a sick feeling in my stomach. "Oh, these children were not poor by any means! Why were they being showered with such luxurious gifts? There are so many people around the world and even in the USA who have so much less. There are children who are freezing from the cold and endure hunger each day from lack of food. Why are we so blind to help the real poor?" My eyes filled with tears as I silently wept for the people who were experiencing true poverty.


(Link to Part Two click here)

I don't know why...A Chanukah miracle

In the midst of this chaotic world, it is often hard to see God at work. We go to the grocery store and lament when a car sneaks by us and steals a prime parking spot. Other times, we complain when church runs long. Or we become distraction while cooking, and our highly delicious meal overcooks and transforms into shoe leather. During all these circumstances, God is at work. When we say, "I don't know why..." God may just in fact be answering prayers.

This week was the big week in which several of my Cyber Monday shopping packages were scheduled to be delivered. I was very excited because one company has a loyalty program in which you earn points based on your purchase amount. The points expire within 60 days of creating an order. I usually am not able to use the points; however, this year, I had a coupon for an extra 15% off my next purchase. With this 15% off discount along with the company's monthly deals and using my loyalty points, I was set to reel in some excellent savings.

One issue plagued me. When ordering a few weeks ago, some items I wanted were out of stock. Other items I was notified were backordered. Some of the backordered items were slated to ship out in the next couple weeks. Over items were simply cancelled from my order. With this all being said, I was highly confused which items were actually sent out. I really needed to get the packages and sort everything out.

I was notified via email my packages arrived. I was happy and yet sad. My mailbox is a long hike from my house. In order to get my packages, I had to get in the car and drive to the mailbox. I was not feeling well--fatigue and fever kept me in bed, not wanting to move. I was lamenting to God about my troubles. "Oh, LORD, I really need those packages to figure out what to buy. But, I am not feeling well. I hate leaving the packages in the mailbox. But I am so exhausted."

Five minutes later, my doorbell rings. My neighbor is standing at my door with my packages. As soon as I open the door, she days, "Your packages were left in my mailbox. I don't why the mailman left them in my box. The packages clearly have your address on them. We don't have the same address. This is not acceptable..." As my neighbor was complaining, I was sending up praises to God. "Oh, thank You LORD!!! Thank You for answering my prayer. Of all the people in the world You could have chosen to leave my packages with, You left them with my very sweet neighbor. Oh what a blessing it is that she even came to my door and delivered them!"

I was also doing an invisible happy dance upon seeing my neighbor. A few weeks ago, my parents invited my neighbor and her husband over for a meal. My neighbor left one her dishes at our house. I had tried a couple times to deliver the dish back to my neighbor, but every time I tried, no one seemed to be home. Now, here my neighbor was at my door. I quickly scurried away and gave my neighbor back her dish. It was a tremendous relief to return the item back to her.

After my neighbor left, I was smiling ear to ear. All my troubles had instantly disappeared. My packages were in my possession. I could figure out what items I needed to order. My neighbor now had her dish back. I kept thanking the LORD over and over again for Hs abundant kindnesses. I then realized, "Oh, it's Chanukah! LORD I have been asking for Chanukah miracles...and this year, so many things have gone wrong during this Festival of Lights. But now, you are showering me with so much love. Thank You and Happy Chanukah!"

Running in place

As I wake up every day, I always have the same things I need to do—the most important thing is to get though my daily Bible reading. I try my best to get through the text. I try my best to stay focused and not fall asleep. But, these lung infections take so much energy. And then I get hungry or thristy and have to take a break. Very soon, it seems, it is bedtime and my Bible is still on the same verse it was in the morning.

There are constant distractions during the day. Phones calls, emails, Facebook messages, etc. As hard as I try to accomplish something during the day, nothing much ever gets done. People tell me the multitude of tasks they complete in a day—go to work, go grocery shopping, make meals, etc., etc. I often lament to myself, “Why does the rest of the world seem to have so much time?” I spend so much time sleeping and sluggishly doing tasks. I feel so grateful when I have a few minutes to watch a YouTube video...but then I feel so guilty. I have Bible studies to write, and Bible studies to proof read. If I do anything which is not Bible related, I feel like I am wasting God’s time.

When I get to the end of my day, I feel like nothing has been accomplished. Oh how I wish God would give me just a little bit more energy and a little bit more time during the day in which I could do more things for Him. Oh how I wish I could fall into bed at night and be tired from a long day of completing various tasks. Instead, I often fall asleep exhausted from fighting Mitochondrial Disease and its various complications.

Chanukah, Chanukah. I am not in the spirit.

I have been planning for some time to write about Chanukah, and some of the Chanukah miracles God has performed in my life in the past. And truly, God has shown some amazing miracles during this Festival of Light. However, I am not in an overly joyful, jubilant spirit to write about past miracles.

As these eight days and eight glorious nights are coming and going, I am asking God to send a miracle or two my way. I have been trying so hard to fight a pseudomonas infection in my respiratory tract since July. Over and over again, God keeps placing roadblocks in my way. I think I find a way to finally receive the treatment I so desperately need, and God obstructs my course of action.

Yes, I know what Scripture says, "Trust in the LORD with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He shall direct your path" (Proverbs 3:5-6). I am trying to remain patient. I am trying to let God lead me. But, I so desperately want to sleep through the night without being woken up, feeling as though I am drowning and coughing up globs of mucus. I want to be able to speak without breaking out in violent coughing spells. I want to get through the day without a sore throat, aching ears, painful joints, fevers, etc., etc.

I asked God in October when I would get the treatment I needed to be free and clear from this infection. The answer He gave me upset me: I will have to wait to receive the proper remedy. I don't know why God is making this so difficult, but perhaps He will use Chanukah to inspire me and assist me in waiting. In these darkest days of the year, may God's light shine forth brightly, giving us a renewed sense of warmth and hope. May God richly bless you today and everyday. Happy Chanukah!

Shop. Wait. BUY!!!

As the days roll by and Black Friday and Cyber Monday near, I always have a little bit of a panic attack. I know the websites I use to buy my vitamins, minerals and supplements from have some of their biggest sales this time of year. I have to carefully take inventory of my medicines and calculate how much I will need to get me through the next 6-12 months. (I used to always buy enough for the next year to come; however, I found this to be too financially draining. Moreover, there are always other holidays in which the websites often offer deep discounts.)

I reluctantly begin my shopping on Wednesday evening. GNC has a HUGE sale which includes free shipping on any order. From previous orders during the last year, I have banked a significant amount of rewards points. I only need to purchase a few dollars worth of drugs to earn enough reward points to allow me to take $5 off my next order. I order two items and hope the reward points are added to my account before the sale ends on Cyber Monday.

There are not too many other sales for the rest of the week. The bulk of the sales begin on Cyber Monday.

I spend many hours on Monday trying to figure out which website will offer the best price for the items I need. Every website has different prices for my supplements and also offer different discounts. Some offer 10% off while others might offer 12% off. I grow very tired and very confused price comparing all my various items. I finally decide to login to one company's website and start filling my cart with the items which have the best price for that website. At the end of the day, I only buy $33 worth of things from two websites. I am very fatigued and am scared if I attempt to buy anything else, I will make mistakes when ordering. I decide to let the sales go.

I check my GNC account. My order has been uploaded to my account. However, the reward points have not been updated. I am very sad. The website never has free shipping on any size order. If I want to use the $5 reward in the future, I will have to buy $49 worth of goods to receive free shipping. I can use the coupon at any GNC store. Unfortunately, the nearest store is about 45 minutes away and has a very limited stock of supplements. I rarely find what I need in the store. I sorrowfully logout of the website and know my $5 reward will expire before I will probably have a chance to use it.

On Tuesday morning, I receive an email from the company in which I loaded up my shopping cart but ended up not buying anything from. I was chosen to receive a VIP exclusive for 22% off my order! I was dumfounded. The day before, the GIANT sale of the year was for 12% off my purchase. Since my items were saved to my account, all I had to do was click the link in the email for the discount to be credited to my total. By waiting a day, I saved an extra 10%!

Late on Tuesday afternoon, I receive a notice my GNC order has shipped. I also receive a notice the GNC sale has been extended one more day. I login to my GNC account, and my reward points have been updated! I have a $5 credit on my account. I quickly make a purchase. With all my discounts, I pay $1.98 for $10 worth of supplements and also receive free shipping! As I finalize my purchase, I am singing praises to God and thanking Him for this incredible blessing.

On Wednesday morning, I receive a valued customer email from another supplement company. Their "Sale of the Year" on Cyber Monday was 25% off site wide. But since I am a highly valued customer (and may I add I did not buy anything from them on Cyber Monday), I now was receiving an invitation for 33% off my next purchase! I gleefully spend some time surfing their site and make a sizable investment in the company.

Well, that is my Cyber "Monday" shopping experience. As each discount came into my life, I could not help but send up praises to God. My health has been greatly challenging me, and it seems God keeps putting roadblocks in front of me to prevent me from receiving medical treatment. But with each incredible discount, it felt as though God was saying, "I know your troubles. Here is a gift from Me to you. Enjoy the savings. I know you have been very stressed about your health. I know you have been trying to find ways to save money to have enough to buy your supplements and give to your church and other charities. With the discounts I gave you, you now have money leftover. I hope you use the extra cash to glorify Me."

Obedient unto death?

Tears steam down my face. I am tired; I am exhausted; I am out of energy to fight my respiratory infection. I travel to my doctor’s appointment hoping, praying for relief. I am given one treatment option, Cipro, a highly toxic drug which damages and destroys mitochondria. I protest. I cannot take the drug. I have had awful side effects from this class of drug in the past.

My pleas are ignore. I am told this is my only treatment option. My peripherally inserted central catheter (PICC) is removed. I am now cutoff from receiving any intravenous mediation.

I go home and ponder taking this highly poisonous drug. But how can I knowingly take a drug which will worsen my mitochondrial disease? How can I take a drug which causes suicidal thoughts? I want to be obedient. But is this what it means to be obedient unto death?

I pray and pray to God, “Oh, what should I do? Please help me. Please guide me.”

God places a memory into my mind. A doctor is yelling at me for receiving intravenous immunoglobulin (IVIG). “You should have known better. You should have known the side effects to IVIG. You should have known this would have made you extremely sick. You should have known this treatment is contraindicated...” And the doctor’s words continue as she proceeds to chasten me for making a poor decision to get IVIG.

As this incident floats through my mind, I cannot think this is God’s answer. I know Cipro is contraindicated for Mito. I know Cipro will make me extremely sick. Can I also imply from this memory that Cipro will also cause additional long-lasting complications?

I again inform the doctor through various forms of communication that I cannot take Cipro. I am advised there are two other drugs available which can treat my infection; however, they are only available intravenously. The doctor says no to the treatments and no to me having another PICC line inserted.

I am trying to remain strong, but I am so weak. I am trying to remain optimistic, but tremendous sorrow overwhelms my heart. I want to be free from this infection. I am trying to cling close to God and know that He has all this in control...but I cannot stop the tears flowing down my cheeks. “Heal me, O LORD, and I shall be healed. Save me and I shall be saved. For You are my praise” (Jeremiah 17:14).

Give thanks with a grateful heart

As we celebrate this great time of great feasting, family and being together, I cannot help but be overwhelmed with thankfulness. There are so many things in my life in which I owe a tremendous amount of gratitude.

First up is God. He is my rock and my stronghold. I cry to Him day and night. He always hears me and tolerates my long lamentations. Despite everything, He stretches out His hand and wipes away my tears. He richly showers me with abundant blessings. I am so thankful and grateful for our relationship.

Second is my mom. She drives me endlessly to all my appointments. She loves me to the moon and back. She is always by my side, fighting to get me the best possible medical care. She likes to surprise me with my favorite foods. She truly is a blessing from God.

Third is my ventilator. As much as I loathe this bulky machine with all its tubing and cords, I am indebted to it for keeping me alive. I often think what my life would have been like if no one had ever created a ventilator. I know I would have gone to heaven a long time ago. I often find myself praising God for having me live at this time in history. With all the technological advancements in the medical field, I am grateful to be the recipient of many scientists’ hard work.

Fourth is my church family. Every week I look forward to seeing the same familiar faces at church. Just seeing my friend Tom opening the front doors to the church brings a smile to my face. When I enter church and see and hear the assistant pastor lead the congregation in song, my heart rejoices in worship. When my pastor preaches his sermon, my soul contemplates the important message God wants me to hear. And the list of people I love to see every week could go in and on. It is such a blessing to be part of such a loving family.

Happy Thanksgiving! May this day and this year be filled with many blessings.

All things in perspective

Fatigue and exhaustion overwhelm my senses. I want to curl up in a ball and cry my eyes out. Why must I continue to be so sick? Why is it so hard to get antibiotics for an infection? My body is so low on energy. Day after day, I struggle with difficulty breathing, coughing, headaches, aching joints, etc.

When I think I cannot take it any more, I login to Facebook. I scroll through posts and then remember to check for an update on a little 2.5 month old baby, who was born with a congenital diaphragmic hernia. He has had complication after complication...and yet God has performed miracle after miracle for this baby and his family. I look for an update. My heart breaks.

The little boy was supposed to have a simple surgery in which a feeding tube was to be inserted into his intestines. Instead, there were major complications. There was massive bleeding. The child had to endure several more surgeries including having his spleen removed. Praise be to God, he pulled through it all.

As I am reading this little boy’s update, I suddenly realize what a child I have been. Although I feel miserable and very tired, I am not clinging to life. I am not in the intensive care unit and do not have a zillion machines hooked up to me monitoring every move I make.

I suddenly am overcome with gratitude. Instantly I start praying for this infant and showering God with abundant thanksgivings for my own health. Oh how easy it is to allow this life to lead one into great anguish and sorrow. But what a joy it is when God opens one’s eyes to see all His mercies and loving kindnesses.

“Bless the LORD, O my soul, and all that is within me, bless His holy name. Bless the LORD, O my soul, and forget none of His benefits, who forgives all your iniquities, who heals all your diseases, who redeems your life from destruction, who crowns you with loving kindness and tender mercies” (Psalm 103:1-4).

Homebound

For the last two years, fatigue, respiratory issues and other medical conditions have kept me at home and in bed. I rarely leave the house except to go to medical appointments, the emergency department or religious services. I have always thought of my situation as self imposed prison. I could leave the house if I wanted to; however, by the time I gather up all my respiratory equipment and load myself into the car, I am overwhelmed with exhaustion. The last thing I want to do is to have to endure the motion of riding in a car. I have decided it is best to remain at home and stay in bed most of the day.

With all this being said, I never thought of myself as “homebound”. I always thought of myself as just being inconvenienced with having severe fatigue and other medical conditions which impede my ability to freely travel. However, a recent visit from a home health nurse changed all this.

When my nurse arrives to begin services, she asks me a series of questions. “Do you use an assistive device to leave the house? Do you have fatigue which prevents you from leaving the house? Do you have pain in one or more joints? Have you fallen in the last year?” To all these questions, I am able to answer “yes”. I use a wheelchair, I am always tired and rarely stray far from my bed, I have pain in many of my joints and recently I have fallen three times. The nurse tells me, “Great. You qualify through your insurance for home health care. You have to be able to answer “yes” to just one of the questions to be considered homebound. You can only receive my services if you are considered homebound.”

I sit a bit stunned at the nurse’s words. “Am I really homebound? Do I really have an inability to leave my residence?” As I think about my life, I realize, yes, I am homebound. If the nurse was not here administering services to me, I would not venture out of my home every week to receive her services. As it was prior to this nurse coming to my home, I did not get the dressing for my PICC line changed every week. I would wait until I was hospitalized and then would ask the nursing staff to change the dressing. I was putting myself at great risk for infection; however, I did not have the energy to leave my house for this task.

So, perhaps I am homebound. What a bummer to have this title, but I am grateful if it means I qualify for home health services. Sometimes you just have to endure having another label added to your chart and ignore its common every day meaning. I choose instead to believe the definition of my label “homebound” means I trust in Jesus as my Lord and Savior, and one day I shall leave this world and go to my true Home...oh what a glorious day that will be!

Mission field warning

Many years ago, I attended a beautiful church. It had huge stain glass windows and a massive organ which took up most of the back of the church. Upon exiting the parking lot, there was a large, prominent sign which read, “Warning: You are now entering the mission field.”

The words on the sign struck a deep cord within me. I though, “What a great reminder as we leave church that we should continue to be upright Christians, following in Jesus’ footsteps, even after leaving a house of worship.”

As I pondered the words on this sign for the next week, I discovered the sign was all wrong. No, there are unbelievers in the church. We need not only be Christians in the world, but we need to be believers at church. I then decided to move this sign to the entrance of my home. I needed to be on the mission field any time I left my house.

As the weeks rolled by, I realized my sign was all wrong. There were friends, family and health care workers who entered my home. I needed to show them what it was like to be a Christian. I needed to be always on guard to share the message of Jesus’ salvation. I then moved the sign to the door of my room. Yes, any time I left the confines of my room, I needed to be actively on the mission field.

Again, a few weeks passed and I understood that the message on the mission field sign was all wrong. Although I may never leave my room, there were always opportunities via phone calls, emails and Facebook to be on the mission field. I then changed the message on my mission field sign to read: “Warning, you are ALWAYS on the mission field!”

Although I no longer attend this pretty house of worship, I keep the mission field message alive and well in my heart. No matter where I am, I know I am on the mission field, and God can use me wherever I am to spread His word to the world.

To the Olson Family—Peace and comfort

Oh now my heart breaks as I learn about the passing of a very dear woman, Mrs. Olson. She was a woman of strength, a mother of five precious children, a wife to a very dear man and a woman of faith to the very end. Her long battle with beast cancer was one not plagued with grief but with endurance, glory and determination. Mrs. Olson was a beacon of light to those around her. No matter how hard her body was suffering the ill effects of a devastating disease, she continued on with comforting words and with the Lord Jesus in her heart.

As I reflect back on Mrs. Olson’s life, Proverbs 31 comes to mind. Eschet chayil is the Hebrew title for Proverbs 31 verses 10-31. Eschet chayil translates into English as a woman of valor, warfare and victory. She is a warrior. In the eastern culture, to be a moral woman was to be expected. However, to be a warrior was a choice. This seems so fitting for Mrs. Olson. She was a woman of great morals, but even more, she was a victorious soldier, fighting to the very end to be the best mother, daughter, wife and friend. She glorified the LORD in all that she did.

Although my heart weeps, my soul rejoices. I know Mrs. Olson is out of pain and is now Home in the loving arms of her Lord and Savior. May peace and comfort encompass her family and friends. The loss left by Mrs. Olson is enormous but her legacy remains forever in the hearts and minds of all those who knew her and loved her.

May the grace and peace of our Lord and Savior surround us and carry us through this difficult time. Amen.

“Strength and honor are her clothing; and she shall rejoice in the time to come. She opens her mouth with wisdom; and in her tongue is the law of kindness. She looks well to the ways of her household, and eats not the bread of idleness. Her children rise up, and call her blessed; her husband also, and he praises her. Many daughters have done virtuously, but you have excellest them all. Favor is deceitful, and beauty is vain; but a woman that fears the LORD, she shall be praised.” (Proverbs 31:25-30)

When God says no

It is 6 a.m. I force myself to roll out of bed and finish packing. This afternoon, I have an appointment to see my pulmonologist at the medical facility 400 miles away from my house. I need to quickly throw a few last minute items into my suitcase and then load up the car. As I meander my way to my closet, I take off my pajamas and slip into comfortable travel clothes. As I am about to put my pajamas back on my shelf, I ask God, “Will I be hospitalized today?” (I have been very sick, and despite receiving IV antibiotics through my peripherally inserted central catheter (PICC) line for many weeks, I am still very ill. I am convinced my pulmonologist will admit me to the hospital during today’s appointment. I find no need to take along pajamas since I will be going to the hospital.) Although I am determined I am going to be admitted to the hospital, God gives me a very firm, stern reply. “NO!”

I stop in my tracks. “What!? What do you mean ‘No’? I am sure my pulmonologist will take one look at me and send me straight to the hospital.” Again, the word, “no” echoes in my head. Although no words are said, I am given an impression that I will be sleeping overnight at the hotel. I will need to take my pajamas if I want something to sleep in besides my street clothes. I decide this is God’s will. I place the pajamas into my suitcase. I then pick up my belongings and start packing the car.

Many hours later, my mom and I arrive at my appointment. As always, I am grateful we are able to make it to my appointment on time; I am grateful the car did not break down or have a flat tire; I am grateful we did not have an accident. Very soon, I am called back to the examination room. First up is the pulmonology fellow.

The fellow seems very concerned about my coughing fits and shortness of breath. The look on his face seems to say, “I am sending you straight to the emergency department! You need immediate medical treatment!” The fellow leaves my room and waits for his attending (my doctor) to finish up with another patient. When my doctor enters the hallway, the fellow gives his report. Shortly thereafter, the pulmonology fellow and my doctor enter my room.

My doctor seems rather unconcerned about my current state of health. She goes on and on about how it is going to take many weeks for my infection to clear. I need to be patient. (I can immediately tell she is not going to admit me to the hospital.) My mom is quite upset. She is tired of having me sick and constantly struggling to get through each day. She wants me healed. She wants me healed now! The passion which burns in my mom overwhelms me with love. I can see tears welling up in my mom’s eyes. My pulmonologist insists I just need more time on the antibiotics. If I do not improve in a week, I should then perhaps be hospitalized. My mom fights the pulmonologist. My mom turns and looks at me. I sit patiently, not saying anything. I gaze into my mom’s face and try to convey to her that this is not God’s will. I am not to be hospitalized today. She should stop arguing with the doctor. She should just give up and let God leads us. We should not struggle against God. My mom, seeing that I am not saying anything, decides to stop battling the physician. She allows the doctor to send me home despite being quite ill.

After the appointment, my mom inquires why I did not oppose my physician. Why did I not say anything? I reply, “When I was talking to God this morning, He made it abundantly clear I was not going to be hospitalized today. I needed to take along my pajamas because I was going to be spending the night at the hotel. Being hospitalized today was not God’s will. I was not going to oppose God and force His hand.” In amazement, my mom responds, “What!? You were talking to God!?” In a shocked voice, I reply, “Yes!” and I think, “Don’t you talk to Him?” I realize my mom does not often communicate with God. I, however, speak to Him all the time. I always ask for His guidance and protection. I am constantly trying to discern His will and act accordingly. And I am grateful for my relationship with Him. As hard as it was to allow my doctor to send me home without further medical intervention, I knew if I tried to force my physician to admit me to the hospital, a bad outcome would occur. It was best to just allow God to direct my path...even if that meant I was going home to continue suffering with a raging infection in my lungs.

Sorrowful Shabbat

As I scroll through Facebook, I know I will see post after post about the great shock and sadness it is that a man came into a synagogue and heinously shot and killed so many innocent people. I scroll. Nothing. I scroll some more. Nothing. Finally, I see a post from a Jewish friend expressing the great sorrow and hatred of this act. One post. That’s it. As time has progressed, a few more of my Jewish friends have posted a picture frame around their Facebook profile photo stating they are standing against antisemitism. I think to myself, “Where is the outrage? Where are the doleful posts lamenting this incredible act of evil?” My Facebook feed remains silent.

As I was pondering today why there is little outcry about this act of terrorism, I realize the answer is simple—it was commited against God’s chosen people. No one cares much if a bunch of Jews are shot while in the midst of observing God’s holy day. No one much cares about the growing hatred toward the children of Israel. We have grown apathetic. Has the Holocaust made us blind to the growing number of ethnic crimes against the Jews? Are our hearts hardened? Do we just think, “Well, it’s just a few more Jews killed. What does that bring the number to? Over 6 million?”

As God works all things, today some friends of mine are visiting Dachau concentration camp in Germany. Vivid images swirl through my head as I recall to mind this place of intense evil I visited so many years ago. Despite being a beautiful day, a dark coldness lingered in the air. I wondered how many people died here. I wondered how anyone could forget the wicked astrocities which were committed here.

As time distances us from the Holocaust, our memories fade; our emotions wane. We are told to never forget the Holocaust. Despite the efforts by many around the world, our hearts have grown cold. We have become a nation more interested in what we will be wearing for Halloween than for the growing hatred and hostility toward our friends and neighbors. My soul grieves. The next Holocaust is but a heart beat away. Will anyone care?

I lift my hands and heart toward heaven. “Oh LORD. I pray for Your people. I pray for Israel. Please comfort those involved in this horrific act of violence. Please never forget Your people. How blessed are those who trust in You. Baruch atah Adonai Eloheinu melech ha’olam (Blessed are You, Lord our God, King of the universe). Amen.”

Part Three: Blessing upon blessing

As I approach the emergency department (ED) check-in counter, the cold hospital air causes me to be seized with a non-stop coughing spell. Immediately, the triage nurse hears my coughs and gasps. Her face instantly shows great concern and panic for my situation. The nurse hurries the current patient through triage. She then quickly summons me back to her station, which is located behind the check-in desk.

As my mom wheels me to the triage area, my dear friend, Bonnie, an ED respiratory therapist who has taken care of me several times, happens to be walking to the triage area. In an instant, she recognizes me. She tells the triage nurse she is taking me back to room number 4 in the trauma center. (For what it is worth, this emergency department is HUGE! There are numerous areas for different levels of care. The trauma center is the highest level of care and has the fastest treatment times.) When I hear Bonnie wants to take me to the trauma center, I nearly start crying. I know I will get medical care extremely fast. ("Thank You Lord, for all these blessings!”)

When we arrive in the trauma center, I again almost cry. I am given an actual room with walls and a door, which is located at the end of the hall. Despite the roaring noise of the trauma center, the room is quiet. As soon as I am rolled into the room, several nurses appear. They assist me into the bed. Then, I have a nurse on each arm inserting an IV. They quickly draw blood for blood cultures and blood tests. As soon as they are finished, a physician walks into the room. She reads the list of symptoms I have typed up on my iPad. She orders IV fluids, IV antibiotics and an X-ray. Shortly after the doctor leaves, a nurse returns to my room. She pushes 2 grams of Cefepime through my IV and hooks up two bags of IV fluids--one bag for each arm. The radiology technician appears only a few minutes later. He quickly takes a picture of my lungs and disappears.

I have a roommate who needs to leave the room to be taken to CT. When she leaves, I hear my physician tell the nurse wheeling my roommate out the door, "When you come back, go to room 6. This is going to be an isolation room." I think to myself, "Hooray! Something must be wrong with me. But surely, an isolation room!? That cannot be correct. I must have misheard the doctor."

A few minutes after my roommate leaves, a nurse posts a sign on my door and closes the doors to my room. My ventilator makes its usual racket, but the noise from the trauma center vanishes. Calm fills the room. My body instantly falls into a relaxed state. I curl up beneath a pile of blankets and rest my head on the bed railing. I soon fall asleep.

Three and a half hours after arriving at the ED, I am given a bed in the medical intensive care unit (MICU). (This truly is a miracle! I usually have to wait 8-24 hours for a bed at this medical facility.) I am overjoyed when I find out I am going to this unit as it has the best nurses and doctors in the entire hospital. If I have to be hospitalized, there is no place I would rather be than at this medical center and in the MICU. I again send up praises and thanks to God for His continued blessings.

When I arrive in the MICU, I am thrilled to see my room is located at the end of the hallway away from the busy and noisy nurses' stations. Additionally, my room is almost twice the size of the regular MICU rooms. (Most of the MICU rooms are just large enough to squeeze in a bed, a chair and a tiny sink. My room, however, has room for two beds! Yes, I got the deluxe suite on this visit!) Moreover, because my room is an isolation room, the sliding door has to be kept closed at all times. This means that the nurses, doctors and medical staff are religious in making sure they close the door when exiting my room. Furthermore, my room is equipped with an air scrubber. The machine cleanses the air to prevent any air-borne bacteria from spreading to other parts of the hospital. Although the contraption is loud, it blocks out all the hallway noise. Oh, how I love peace and quiet! (Thank You Lord!!!)

Before I drift off to sleep for the night, a physician visits me. He informs me that my pulmonologist has filled him in on my medical case. (I am overwhelmed with this news. How wonderful it is to have a doctor know some of my medical background! This information helps tremendously in guiding my treatment plan.)

As my eyelids grow heavy, I cannot help but think about the day. Despite being gravely ill, every place I turned, God showered upon me blessing upon blessing. When I was in such dire straights, God moved mountain after mountain to ensure I got the urgent medical care I so desperately needed. Praises and words of thanksgiving continually spill forth from my lips as my body tugs me into dream world. God's comfort and love surround me as I slip into sleep. How awesome is the God we serve!

“They that trust in the LORD shall be as Mount Zion which cannot be moved, but abides forever. As the mountains are round about Jerusalem, so the LORD is round about His people, from this time forth forever more.” (Psalm 125:1-2)


(Link to Part One click here)

Part Two: When the sun rises

The sun finally rises. I decide to use all my energy to get out of bed. I need to pack. I make my way to the kitchen. I am overwhelmed with joy when I see my father sleeping on the couch. I know he will wake up when I make some noise. I am still ambivalent if I should seek medical care. I tell myself, "I will take my temperature. If I am running a fever, I will go to the emergency department." I find a thermometer on my night stand. I take my temperature. It reads 101.8 degrees. I reluctantly make a final decision. I am going to the emergency department.

I slowly gather up some of my belongings. Moving very sluggishly, I immediately am overwhelmed with fatigue. I think I might collapse from sheer exhaustion. I push through the fatigue. I return to the kitchen and start making some noise. My father wakes up. I use all my strength to speak. "I feel very ill. I need to go to the emergency department." My father immediately wakes up. He bolts off the couch and heads for his bedroom. I can hear him wake up my mom. Very soon, my parents are running around the house, trying to pack and load the car as quickly as possible.

I continue to collect my belongings. I am so weak, I am shaking. I collapse a few times. My head is spinning. Nothing makes sense. I wonder if I will have the strength to make the 400 mile journey to the medical center. My mom immediately tells me not to move. She tries to finish packing for me. After resting a while, I finally have the strength to head for the car and collapse into the backseat.

The journey to the medical center is quite hazy. I constantly am in and out of slumber land. I am often surprised how much time passed between my bouts of consciousness. Thankfully, traffic is very light during our travels; my father makes record time getting to the emergency department. About 90 minutes from the hospital, my right shoulder explodes in pain. I attempt to get comfortable, but nothing helps relieve the incredible pain pulsating in my shoulder. When we are 45 minutes from the medical center, I receive an email from my pulmonologist. She gives instructions on what I should do when I arrive at the emergency department.

At 3 p.m., we arrive at the emergency department entrance. As I cross the threshold of the building, I am overwhelmed with the number of people waiting. My heart sinks. I am so sick. I do not think I have the strength to wait several hours for medical treatment. I send up a prayer to God. "Thank You for Your abundant blessings. Thank You that You gave me the ability to endure the long car ride. But, Lord, look at all these people. Please help me get medical treatment fast. Please continue to shower upon me Your loving kindnesses. Amen."


(Link to Part Three click here)

Part One: Waiting for the sun to rise

It is 11 p.m. I lie down to sleep. I am exhausted. I just spent three days and two sleepless nights in the hospital. I yearn to fall into a heavy sleep and not wake up until the sun has circled the earth back to the western horizon. I lie down. I am cold, so cold. My body is shaking. I try to curl up beneath my blanket, but I cannot get warm. I remember in the hallway closet I have a thick down-filled winter parka. I sluggishly make my way to the hallway closet. I feel so sick. I snatch up the bulky jacket and grab a wool winter cap. I place the hat on my head and zip up the coat. I return to my bed, but I cannot get warm. Very soon, I notice my body is frightfully hot, but I am shaking from being ice cold. I am shaking so violently; my chest explodes with pain.

I try to sleep, but how can one sleep when shaking uncontrollably? As time passes, I become more and more ill. I have excruciating abdominal pain. I am very nauseas and think I might throw up. I am too weak to move. My body writhes in pain. Every joint and muscle aches. My head screams in agony, and pain shoots down my neck. Confusion is starting to overwhelm me. I think to myself, “I have not been this sick since the time I developed sepsis. I wonder if the pseudomonas infection brewing in my lungs has decided to invade my blood. I really hope this is all being caused by pseudomonas. I really hope I did not acquire another bug during my recent hospitalization.”

I fight through the night. High fever and shaking chills prevent me from sleeping. I begin to wonder if my symptoms will ever subside. I begin thinking I perhaps should seek medical attention in the morning. I begin pondering if I should contact my pulmonologist. I start drafting an email in my head. Around 4:30 a.m., my fever drops enough to allow me to move. I start writing an email to my physician on my iPad. I decide not to send the email. I think, “What if I start feeling better? I don’t want to bother a medical professional if I don’t have to.” I decided to wait until 6 a.m. “Yes, if at 6 a.m. I am still not feeling well, I will send my doctor the email.” I wait and wait. At 6 a.m., I am still very ill. I reluctantly hit the send button on the email. I feel like such a fool for contacting my doctor, but I know she can help guide my medical case. And now that I have hit the “send” button, I am forcing myself to seek medical attention as I told my doctor I would be coming to her medical facility as soon as my parents wake up.

I look desperately to the eastern sky. “Oh sun, where are you? Please rise soon. God, please wake my parents up. I am so sick. I need to get to the emergency department, the emergency department which is 400 miles away. Please give me the strength to make the trip. Please hurry up the morning. I cannot wait. I am so sick. Please, Lord, rise up the sun soon.”


(Link to Part Two click here)

Roller coaster ride

As I am lying down, lazily reading the Bible, I decide to take a break and check my emails. I see an email notification that there is an important update from one of the medical clinics I visit. I recently have changed some of my appointments and think this must be a notification informing me of a change I made to one of my appointments. I decide to login to my patient account to investigate the notification.

Upon entering the site, I cannot discern that any changes have been made. The appointments I cancelled are still cancelled, and the appointments I had made are still scheduled. I then notice an appointment I have with my pulmonologist in two weeks is missing from my “upcoming appointments” list. I think this is odd. I then check my cancelled appointments log. To my shock, my pulmonology appointment is listed as cancelled. “Oh no! How can this be! Is my pulmonologist mad at me!? Why is my appointment cancelled?” I nearly break out in tears. I have not been feeling well. I had resolved earlier in the day to use every last ounce of energy to make it two weeks to my pulmonology appointment to seek medical care. I was not going to go back to the hospital or emergency department no matter how terrible I felt. But now, what was I going to do!?

I look at the clock. It was after 6 p.m. I could not call the clinic. They were closed. But, oh, I must find out immediately why my appointment is cancelled. I do have my pulmonologist’s email address. Do I dare email her? Will she answer the email so late in the day? I decide I have nothing lose and email my pulmonologist. As I wait for a response, I decide to go back to reading Scripture. A half hour passes before I check my emails. To my shock, there is an email response from my pulmonologist. The email states she has a meeting and will be out of town the week of my appointment. I am relieved I have done nothing to cause the appointment to be cancelled, but I again nearly burst into tears. “Oh, I feel so awful. I am so sick. I cannot wait another 2-3 months to reschedule an appointment with my doctor. Oh no. No! This is so heart-breaking! What should I do? What can I do?” I decide not to email my doctor and tell her how sick I am feeling. I remind myself that this is just a test from God. God is in control. He knows my needs. He will direct my path if I just allow Him to.

Two hours later, I am in the midst of administering my IV antibiotics when the telephone rings. I think, “This is odd for someone to be calling at 8:45 at night. I wonder who it could be?” The man on the phone informs me he works for my doctor. “Your doctor had a change in her schedule and has to cancel her appointment with you in two weeks. But I am to offer you an appointment for next week.” I sit a bit dumb-founded and say, “This next week as in seven days from now!? Well, yes, of course. I will take the appointment.” I am in disbelief. I won’t have to wait 8-12 weeks to see my physician! I only have to wait seven days. Yes! SEVEN DAYS!!! I want to scream and shout and dance with delight. “Oh LORD, LORD!!! I can’t believe it! I am so sick. I have been lamenting all day I did not think I had the strength to endure two more weeks of being so sick. And now, I only have to wait one week! Yes, ONE WEEK to see my doctor!!! Oh how You so quickly turn my sorrow into joy! How quickly You have heard and answered my prayers. I just might have the energy and stamina to remain out of the hospital until my appointment with my pulmonologist. Thank You! Thank You! In Jesus’ name. Amen!”

Praying my way through pain

It’s another night. It’s another night in the hospital. It’s another night in the hospital with a pancreatitis attack. Earlier in the day, I underwent a procedure in which a scope was placed down my throat, through my stomach and into my small intestine. A small probe was inserted up into my pancreas. Dye was injected and X-ray imaging was used to visualize my pancreas.

Almost as soon as I am awake from the general anesthesia, I am shaking in pain. I am thankful a nurse is by my side to monitor my recovery from the anesthesia. She quickly gets me some pain medication. When the medicine does not work, she calls the doctor for more medicine. The nurse explains how much pain I am in. The doctor decides this is a pancreatitis attack, and I should be admitted to the hospital for pain control. In the meantime, I am allowed 50 mcg of fentanyl every ten minutes. I have never been given or have had access to this much pain medication. Very quickly I am finally free from my pancreatic pain. This is the first time in many months that I do not have pain raging in my abdomen.

When I am transferred upstairs to the floor, I have a “sitter” who stays in my room to monitor my vitals and ventilator. The nurse quickly gets me situated. The pain medicine is starting to wear off. I ask for something for the pain. The nurse explains she has no orders for pain medicine. She leaves my room. The only thing I know to do during times of pain is to try my hardest to read God’s Word. My eyes are filled with tears. I get out my headphones and decide listening to the Bible is a better alternative than trying to read. My sitter asks me what I am listening to. I reply, “The Bible.” The sitter does not say anything, but the shocked expression on her face says it all.

Very soon, I am writhing in agony. I repeatedly beg my nurse for pain medicine. The nurse finally calls the doctor. I am prescribed a one time dose of 25 mcg of fentanyl. Since there is someone in my room, I keep my tracheostomy cuff closed, which prevents the sobs and screams from escaping up my throat and out my mouth. Only when I have to speak (and thus have to open my trach cuff), do I allow myself to give voice to the agony pulsating through my body. My sitter tells me how amazed she is that despite all the pain I am in, I do not scream or curse at my nurse. The sitter’s words bring tears to my eyes; her words are sweet nectar to my soul.

I try hard not to raise my voice at my nurse, but very soon through my shrieking, I am using a raised tone of voice. It takes over two hours for the medicine to be delivered from the pharmacy to my nurse. I am in so much pain by the time the medicine is administered, I do not even feel the drug’s effects. I beg the nurse for more pain medicine. I explain I was given 50 mcg of fentanyl every TEN MINUTES after my procedure. A one time dose of 25 mcg is a very small dose and is ineffective for the pain. The nurse refuses to call the doctor.

I shake in pain for the entire night. Around 6 a.m., the pain starts to subside. When my sitter is getting ready to leave at 7 a.m. for the shift change, she explains to me how she could not believe it took so long to get pain medication. She tells me how sorry she was I had to suffer so much and for so long. She says how she marveled at my ability to endure so much pain for such a long time. She encourages me to continue listening to the Bible.

When she leaves my room, tears stream down my face. Was I able to be a good Christian during this night of excruciating pain? Was God able to use me in this dire circumstance? I thank God for giving me a reduction in my pain. I thank Him for using my pancreatitis attack for His glory. I ask God to continue using me in all circumstances and to allow His light to shine in the midst of so much pain and darkness.

The 5 o'clock hush

As the clock strikes 8 a.m., my pulse quickens a bit. It is Monday morning. After a nice peaceful weekend, the phone lines to most medical facilities are now open. Almost immediately, the phone rings. It is my pharmacy or home health agency or doctor's office calling. I am too tired to take the call. I allow the phone to ring and hope my mom takes a message for me.

Every week day, it is the same routine. All day long there are phone calls from some medical-based company. Sometimes the phone calls are just reminders about upcoming appointments. Other calls bring discouraging news such as prescriptions being denied or medical appointments not being approved because additional information is needed. I then need call doctors' offices or insurance companies and often spend too many minutes on hold. My patience grows thin.

As the day marches forth, I often count down the hours until the clock strikes 5 o'clock. Oh, 5 o'clock! My favorite time of the day! Doctor's offices, insurance companies, durable medical equipment companies, etc., all close at 5 p.m. When the minute hand on my clock clicks passed 5 p.m., I know the phone will no longer ring for the day. I breathe a sign of relief. My "job" for the day is over. I can relax and not have to worry about resolving any urgent medical matters...well, I can relax for the next 15 hours until the next week day starts all over again at 8 a.m.

Who is like You, Adonai

I lie in my bed, and suddenly, I am overcome with tremendous gratitude. I break out into uncontrollable sobs and cannot help but feel enormous love for God. I have just returned home from spending several days in the hospital. Due to extremely slow internet at the medical facility, last week I was not able to watch Shabbat services online. But now that I am home, I am able to listen to last week’s Shabbat service.

As the service proceeds, the beauty of the music and warm familiarity of the program makes me weep with thankfulness for everything God is bestowing upon me at this moment. I relish in the incredible comfort of lying in my own bed. My body melts into the softness of my mattress. I snuggle down closely to my comforter and delight in its warmth. I rejoice for being able to enjoy my room temperature set to the mid-80’s and am not freezing in a cold hospital room. My body is overflowing with appreciation for no longer having monitors hooked up to me and having my arms free from IV lines. What a pleasure it is to be able to move freely and have the ability to lie in any position on my bed without fighting against cords and medical equipment.

The list of things in which I am thankful for goes on and on. I find myself indebted to God for being alive. How wonderful it is to be His servant. How amazing it is to be able to freely worship Him. Despite all my recent hospitalizations, what a blessing it is to love Him, to honor Him and to receive His abundant mercy. Not every day is easy, but with God, every day is a precious gift. Every day is an opportunity to praise and worship the great Creator. “Oh, LORD, thank You for Your protection and guidance. Thank You for allowing me to live this day. Thank You for all Your bountiful blessings. All my love to You! Amen.”

A week in the life with Mito

With all my recent health escapades, I completely forgot to write about Mitochondrial Disease Awareness week. So, although this is a wee bit late, here is what my life with Mito was like during Mitochondrial Disease Awareness week.

On Sunday, I drag myself to church. I have just spent four days in the hospital and was discharged home late in the day on Saturday. After having been hospitalized several times and missing church for nearly a month, I yearn to see my church family. Despite my best efforts, the ordeal is too taxing on my body. I have to leave church early because I am absolutely exhausted. I go to bed for the rest of the day.

Monday I learn that my IV antibiotics will not be delivered to my home. I am devastated. I was discharged home from my recent hospitalization without any antibiotics. Despite having antibiotics prescribed from a previous hospitalization, the infusion center has made my prescription null and void. The sorrow which fills my soul overwhelms me. I need antibiotics. I have a multi-drug resistant strain of pseudomonas. How can I overcome a raging infection without antibiotics? Just when I am about to completely collapse from sorrow, I receive a call from my infectious disease doctor. He was informed my prescription was cancelled. He decides to prescribe a new drug.

Tuesday comes and goes. I spend most of the day in bed too sick and too tired to move.

Wednesday, my new IV antibiotic arrives. A few have hours later, my home health nurse shows up to administer the new drug. She takes my vitals and begins the infusion. Very soon, I develop a severe headache. The world starts spinning. I become extremely dizzy. Confusion sets in. I have to lie down. My breathing is becoming severely labored. It is becoming harder and harder to breathe! My tongue swells up. My throat closes up around my trach tube. The nurse asks if I am feeling ok. I use all my energy to attempt to speak. The nurse discerns I am having an anaphylactic reaction to the drug. She consults the drug protocols for administering epinephrine and Benadryl. Slowly, very slowly, my symptoms subside. An ambulance is called. I am taken to the closest hospital.

I spent the next few hours freezing in an emergency department (ED) cubicle. My mom does not want me treated at this hospital. She sternly tells the ED physician I am not to admitted to the hospital; she is going to drive me nearly 400 miles to the medical center in which I have my team of doctors. Thankfully the clinician complies and allows me to be discharged as soon as I am stabilized.

My mom then drives me through the night to the medical center. Just before 2 o’clock in the morning, we arrive at the hospital’s emergency department. Thankfully, the ED is not busy. I am whisked off to triage and subsequently given a room in the ED. Tests are run.

Just before 6 a.m. on Thursday morning, I am rolled up to my room in the intermediate medical unit. A doctor visits me along with a respiratory therapist and other medical personnel. I am grateful when the clock strikes 6:20. The food service phone line is open. After being awake all night, I am starving. I greedily pick up the phone and order breakfast. The rest of Thursday passes without much fanfare. I see several doctors. I am started back on antibiotics. A sputum specimen is collected. I am told nothing else will happen until the culture results come back from the sputum sample.

Friday and Saturday pass. I am bored. I am annoyed to be back in the hospital. I am terribly tired from lack of sleep. I do my best to observe Shabbat. I am grateful my mom visits me. She brings me treats such as McDonald’s iced tea, yogurt, and soft boiled eggs. She travels to another area of the hospital to fill my styrofoam cup with hot water so I can make hot tea. I am overwhelmed with her kindness and her willingness to bring me delicious food and drink.

Well, this is where my week with Mito ends. I am in the hospital again. I am waiting for culture results. I am waiting to be discharged. For what it is worth, I am subsequently discharged home on Monday. And another week with Mito begins all over again. Although every week is always different, of late, every week seems to include a visit to the ED and/or hospital. This is just what it is like to have Mitochindrial Disease. It seems as hard as I try to separate myself from the medical world, I am never able to disentangle myself from its clutches. I long for and look forward to the day when I am truly free from this disease. What a day that would be!

Raindrops falling

As the rain beats down on my window, I find myself wiping my own raindrops from my face. After spending so many days in the hospital fighting off infection after infection, I am exhausted. I know all these trials are from God, but I really wish I could have a few days of vacation.

Recently, several people have told me how inspiring my life is. They are encouraged by my tenacity to keep on fighting through each challenge. I know their words are sincere, but I find little comfort in them. I have no choice. How can one stop fighting? How can one stop living?

I keep on going through each day, wishing, hoping and praying that some day I will be infection free. Some day, I will be free from this PICC line in my arm. Some day, I will no longer have to constantly watch the clock to ensure I infuse my IV antibiotics at just the right time.

Just when I think I am on the verge of uncontrollable sobs, God stretches out His hand. He hears my prayers. He shows great mercy and loving kindness at just the right moment. He wipes away my tears and fills me with abundant love. My heart overflows. I feel tears welling up inside me as gratitude cascades from my soul.

As the rain continues to beat down on the ground outside my window, I allow the steady percussion of the raindrops to whisk me away to dreamland...a place where sunshine and rainbows are never more than a thought away.

Dirty window panes

I sit in my hospital bed. I look at the white board. The days on the calendar have slipped by. How many days have I been here? Each day blends into another day. My hair is extremely dirty. It has been two weeks since my last shower. Oh how I wish I were not in a high level care unit. There are no showers in the unit. Who needs to shower when you are critically ill? This girl does!

I am glad I have been extremely sick. I have sleep most of the days. But, every now and again, I have some energy. I look to my left. A window made up of nine rectangular window panes encourages me to look outside the hospital. However, the window panes are caked with years and years of black soot from the city’s pollution. Despite the obstructed view, I yearn to see what’s outside my window. To my amusement, my window looks into a hospital walkway just ten feet away. People are constantly crossing the walkway, going from one medical building to another. Where are these people going? The medical center is quite large. I have no idea where I am in the complex and have no idea what buildings this walkway connects.

I gaze and gaze at the walkway. Mothers pushing strollers with young toddlers playing in the carriage. Folks in white coats hurriedly whisk across my vision. Other medical personnel in scrubs meander slowly as they carefully balance a hot cup of coffee in one hand while texting on their smartphone with the other hand. Families visiting loved ones carry flowers, cards and/or balloons. Tired nurses shuffle along cradling a container of food in their arms. The procession of people seems to never end. Even in the wee hours of the morning, there always is someone crossing the walkway.

I enjoy my people watching hobby. However, storms roll through the area. As the rain falls, condensation collects on the window panes. Now, my view is completely obscured. My heart aches a bit. My connection to the outside world is hindered. I look around my tiny room. There isn’t much to look at. I click open my iPad and read Scripture. (I also pray for the sun to come out. I pray the condensation on my window panes soon evaporates.) Several hours later, the sun returns to the sky. My dirty window panes appear again. Once more, I can peer out my window into the outside world.

Although I lament being in the hospital, I praise God for these black encrusted window panes. I thank God for providing entertainment while I patiently endure another hospitalization.

Dark foreboding. Do this or else...(Part Five)

Most of my blog posts have a conclusion to them. When I began writing this series, I thought the end of this story would be this: “I spent three days in the hospital. After becoming stabilized, I was discharged home. I am thankful to be alive. I am thankful for God’s guidance.”

Although this is a true statement, the effects of the IVIG have greatly altered my life. When I had an adverse reaction to the IVIG, I was given high doses of steroids and anti-inflammatories. These decreased my immune system and along with IVIG which can also decrease your immune system a bacterial infection (pseudomonas) was given an opportunity to throw a huge party in my lungs now that it was unhindered. The pseudomonas infection lead to a whole host of other complications. I could never have imagined how many times the side effects of IVIG have nearly cost me my life.

(The irony of it all: At the beginning of the story, my neurologist threatened to not be my doctor if I failed to receive the IVIG infusions. Ten hours after being discharged home from having a severe reaction to the IVIG, I became extremely ill when a pseudomonas infection went into full force in my lungs and subsequently invaded my blood stream. I was hospitalized for twelve days, during which time was scheduled my follow-up appointment with my neurologist. I had to call and cancel my neurology consult. When speaking with the physician, I was told the following. “Because you had a bad reaction to the IVIG, I will no longer be your doctor. I don’t know why you had a bad reaction, but you are too complicated of a case for me. Please find a different physician to treat you.” I was left dumbfounded by the clinician’s words. She was going to drop me if I did not get the IVIG, but now that I had a bad reaction to the treatment she demanded I receive, she was going to drop me as a patient anyway. Wow, I did not see that coming!)

It is truly by God’s grace that I continue to live each day. Will I ever be free from my adverse reaction to IVIG? Only God knows. This truly has been a test in obedience, and at the same time, it has been an incredible blessing seeing God’s workings and miracles all around me. I am overwhelmed with gratitude and thankfulness for God’s tremendous love and mercies. However this story is to end, I know God will be with me, holding my hand and leading me in the way I should go.

(Link to Part One click here)

Dark foreboding. Do this or else...(Part Four)

Eight and a half hours after first arriving at the hospital, I am wheeled up to the ICU. I am grateful fatigue prevents me from reacting to my surroundings...otherwise I am sure I would have been sobbing and screaming, "No, no!!! Please let me go home!" But, instead, I silently sit on the gurney, holding on to my ventilator as two nurses zip me down hospital hallways.

When I arrive in my ICU cubicle, it is the same old, same old routine--a nursing assistant records my vitals, a respiratory therapist records my ventilator settings, the nurse asks a multitude of questions to register me, etc. I sit in a state of pain and bewilderment. I start asking myself "Why am I here? If this was a "typical" reaction to IVIG, why have I been admitted to the hospital?" I try to still my mind, but I am annoyed that it is once again Friday night (Shabbat), and once again I am in the hospital. I apologize to God for not being able to observe Shabbat. Shabbat is supposed to be a day of rest. How can one rest when stuck in a busy ICU? The internet is too slow to play streaming video, recorded video or even YouTube. How can I observe Shabbat without being able to at least virtually attend a Shabbat service? I am grief-stricken. But soon, a delayed reaction to the IVIG consumes me in pain.

I am gripped in a tight ball of agony. It feels as though I have slammed my head into a brick wall. I cannot move my neck, and my GI tract is exploding in pain. I beg and plead for pain medicines. Slowly over two hours, I am given small doses of narcotics. After several visits from the ICU clinician, he decides the best way to treat my pain is to sedate me into unconsciousness. Normally, I would protest this plan of action. However, it has been an extremely long ordeal, and my mind is overwrought with the events from the day. I welcome anything which will push me into dreamland. A large dose of Ativan is given and IV Precedex is administered. Soon, I am swept off to slumberland.

The next day, a neurologist visits me. He says how concerned he was about my IVIG reaction. He called my symptoms "a severe reaction" and "an anaphylactic reaction". He said I should NEVER have another IVIG infusion done again at an infusion center. But perhaps if there was a strong indication that IVIG would be beneficial, I might be able to try IVIG again with the use of lots of immunosuppressants and being done under very close supervision by a physician. However, even with using all those precautions, he was not sure I should ever have IVIG done as I might have an even worse reaction the second time. (I was amused that this physician's advice was the opposite of the ED doctor's counsel. The ED doctor seemed apathetic toward my reaction and subsequent symptoms. This clinician made it sound as though I was on the brink of death and am lucky to be alive.)

The neurologist went on to say the reason I was admitted to the hospital was to ensure I did not have any additional flare-ups from a delayed reaction to the IVIG. The IVIG will stay in your body for up to several days until your body is able to clear it. It is necessary to keep me in the hospital until he felt I was safe to go home. Upon hearing the doctor's words, I was suddenly very grateful to be in the hospital. After the delayed pain attack the night before, it was calming to know God was keeping me safe by having me admitted to the hospital.

(Link to Part Five click here)

Dark foreboding. Do this or else...(Part Three)

Very slowly, the male nurse makes his way over to the nurse's station. He calls the emergency department (ED) and informs them I will be arriving shortly. After a brief discussion about my symptoms, the nurse hangs up the phone. He summons a couple nurses to help him transport me to the ED. Since the ED is connected via hallways to the infusion center, the nursing team decides to leave me in the recliner, which is on wheels. The team pushes the bulky recliner with my ventilator perched on the recliner's side table. Another nurse pushes my wheelchair ahead of the recliner entourage.

It seems as though it takes ages and ages to make our way to the ED. As we roll through several areas of the medical facility, I see people staring at me. As we pass near one of the main hospital entrances, I yearn to look for my mom. I have a feeling she is in the lobby waiting for me. I then realize my current state of health might greatly alarm her. I cease from peering into the lobby and turn my face away.

When we arrive at the ED, the triage nurse very slowly registers me. He then tells my infusion team to take me around to the back of the triage area. I am deposited in a back area. The male infusion nurse insists my IVIG infusion (although it is turned off for the time being) be left attached. The infusion center nurse instructs the triage nurse that as soon as I am stabilized, the infusion should be resumed. I am in disbelief at the infusion center nurse. "Really!? You want me to have a repeat performance of this frightening ordeal!?" I pray they will not continued IVIG infusion.

The triage nurse takes my vitals. He then says I will have to wait for a room. He abandons me in a back room and returns to his station at the triage desk. I wait and wait. My body is starting to recover from the infusion. My airways are opening up. My tongue is decreasing in size. I am slowly able to articulate words. My head, neck and back still rage in pain. However, the nausea is gradually receding. I wait 25 minutes for a room in the ED. Right before I am taken back, I almost ask to be released. I have been in too many EDs lately. I have been hospitalized too many times. I know if I stay to be seen by a physician, there is a good chance I will be admitted to the hospital. The thought of spending one more moment in the hospital is almost enough for me to flee the ED. However, my symptoms are still too intense. I remain recumbent in the recliner and pray the infusion center was able to contact my mom. Although I am in rough shape, I really need her presence to help calm the fear coursing through my body.

An hour and a half after the start of my IVIG infusion, I am wheeled into an ED room. I am transferred onto a bed and abandoned. I sit in the room shaking and trying to calm my nerves. I am lamenting my decision to be brought back to an ED room. I should have fled when I had a chance. Thankfully, my mom arrives in my ED room a half hour later. I am grieved that I am still tremendously sick from the IVIG, but I am overflowing with gratitude that I now have someone to speak for me and advocate for me. We wait and wait to see the physician.

Two hours and 20 minutes after coming to the ED, a physician is in my room. By this time, most of my symptoms have subsided. I still suffer from an intense headache, and a stiff and painful neck. Most of the other symptoms have decreased in intensity to be only annoyances rather than major burdens. The ED doctor is rather unconcerned about my IVIG reaction. He tells me IVIG reactions are quite common. About 15% of all first-time IVIG recipients experience a reaction. Thankfully, now that I have had a reaction, my second IVIG infusion should go smoothly. I look at this man in his white coat and think, "You cannot tell me that you would recommend me receiving more IVIG? My tongue and airways swelled up. This is a type of anaphylactic reaction. I am fairly confident if you gave more more IVIG, I would have a worse reaction even faster than this one." Although I want to argue with the doctor, I am too tired and too despondent to respond to his remarks.

Blood work is ordered, a CT scan and X-ray are completed. I am given IV fluids and am told my headache will go away because I am dehydrated. I almost laugh out loud. I am not dehydrated. On the way to my ED room, I had to stop off at the ladies' room and deposit over one liter of fluids. Believe me, I am not dehydrated. In fact, the urge to go again is creeping up on me. I am grateful when the nurse asks for a urine sample. "Oh, thank You LORD for the opportunity to use the restroom again."

My ED experience slowly creeps by. With each passing hour, I am feeling better and better. I am grateful when a nurse finally disconnects the IVIG infusion line. I am told I will not be receiving any more IVIG for the day. I breathe a sigh of relief. Four and a half hours after arriving at the ED, a nurse walks into my room. She says she needs to start another IV. I am dumbfounded. I am ready for her to pull out my first IV and discharge me home. I inquire why I need another IV when I am going to be going home very soon. She informs me I am going to be admitted to the hospital. A request has been made for me to be transferred up to the ICU. As soon as a bed is available, I will be moved. Upon hearing these words, tears spring up in my eyes. I think I am going to vomit. A voice screams in my head, "No! NO!!! I was not supposed to be admitted to the hospital. This was not part of the plan. I was just supposed to get pain and anti-nausea meds. Then I was going to go home and sleep in my glorious own bed! Oh, no! NO! I cannot stay another moment in a hospital. I cannot endure another hospitalization. Oh, this has to be a mistake! Oh, this cannot be real." The nurse starts another IV line. She then leaves.

It is growing late in the day. My mom is very tired and very hungry. Knowing it could be many hours before a bed opens up for me in the ICU, she bids me farewell and leaves for home. As I wait and wait for my bed in the ICU, I again think about fleeing the ED. Where would I go? I am 45 minutes away from home. How much would a taxi cost? Is there some place where I could sleep for the night and have my parents pick me up in the morning? As these thoughts race through my head, I decide I am too exhausted and do not have the energy to maneuver my wheelchair along with all my belongings out of the ED. Broken-heartedly, I resign myself to staying in the ED and waiting for my deluxe accommodations in the ICU. Not knowing what else to do, I click open my iPad and start reading God's Word.

(Link to Part Four click here)

Dark foreboding. Do this or else...(Part Two)

The nurse inserts the IV catheter into my left wrist. I breathe a sigh of relief when I see a flash of blood squirt out the end of the catheter. "Praise be to God. She got the needle into my vein the first time." The nurse tries to draw out blood she needs for some lab work; however, she cannot get any blood to collect in her test tube. Thankfully, my nurse calls over another nurse, and with her help, she is able to collect the needed blood. (I again send up a praise to God. "Thank You LORD! Thank You for sending the needed knowledge to the second nurse on how to collect blood from my IV." I breathe a sigh of relief.)

The nurse hooks up a small bag of dextrose. She begins infusing the dextrose into my IV line. Next, she spikes the immunoglobulin bottle. She then enters the necessary information into the IV pump. The thick liquid slowly descends the plastic tubing and starts dripping into my wrist. I sit, trying to read the Bible on my iPad, but I know something bad is about to happen.

As the first few minutes of the infusion proceed, I notice my breathing is starting to increase. I think this is odd. I do not feel nervous. Furthermore, I am sitting reclined with my feet up. There should be no reason I should have an increase in my respiratory rate. About ten minutes into the infusion, I start feeling unwell. My arms start to shake. My breathing continues to quicken. The room spins. I am developing a bad headache. My neck becomes very sore and very stiff. The nurse increases the infusion rate. My symptoms immediately intensify.

I urgently tell the nurse I am not feeling well. She then leaves me and goes to a side office. A male nurse exits the office and comes to my side. He asks me about my symptoms. As I am talking with the man, I notice my speech is becoming sluggish. I am having more and more difficulty forming words with my mouth. The male nurse asks if I took Tylenol before the procedure. I said no. He meanders off to a medicine cabinet and retrieves two Tylenol tablets and a cup of water. The nurse returns and tells me to take the Tylenol. "It will help with the symptoms," he informs me. My hands are violently shaking now. I carefully take the medicine and sip a tiny amount of water. I am thankful when the pills and water slide down my throat. The man asks if I need to go to the emergency department (ED). Although my symptoms are intense, I have felt a lot worse many other times in my life. I decline the invitation to the ED.

The nurse insists he cannot discontinue the infusion. Strangely, he utters words to the female nurse which are very similar to what my neurologist said. "She needs the IVIG. It is essential for her treatment of her condition. She needs to get the entire infusion." The male nurse walks over to my IV pump and slows down the infusion speed. My health continues to deteriorate.

By the 15th minute of the infusion, I am violently shaking. Despite having a trach and using invasive ventilation, I am struggling to breathe. I am overcome with uncontrollable coughing fits. My tongue feels as though it cannot fit in my mouth. My thinking is extremely cloudy. The only thought running through my mind is, "Please stop the infusion!!!" As much as I want to scream this out loud, I cannot form the words in my mouth. The pain in my head is exploding. The overhead lights send excruciating pain throughout my head. My neck is extremely stiff, and pain radiates down my spine. I am tremendously nauseas. I feel as though my entire GI tract is trying to force its way up my esophagus. I am drenched in sweat. It feels as though I am sitting in the midst of a hot oven; however, my hands and feet are ice cold.

The male nurse asks me about my symptoms. I try and try to form words in my mouth, but between my swollen tongue and the disconnect between my brain and mouth, it takes about a minute for me to choke out "yes" or "no" responses. I wish I could just nod my head. However, the stiffness and pain in my neck make it impossible to move. The nurse asks again if I want to go to the ED. This time I say yes. I know the IVIG must be stopped immediately. I know my body cannot handle any more of this toxin leaking into my vein. The only way I believe this nurse will stop the infusion is if I go to the ED. Using all my strength, I slur out, "Yes! ER!" The nurse understands my wishes and reluctantly stops the infusion. I look at the clock. Eighteen minutes have elapsed since beginning the infusion. Eighteen precious minutes ago what a different life I was living.

(Link to Part Three click here)

Dark foreboding. Do this or else...(Part One)

After searching and searching for a neurologist, it seems God has placed in my life an amazing physician. She is kind, sincere and seems eager to help. She sends me to a distant land to get an additional neurology consult by an “expert” clinician. When the very knowledgeable doctor sends me back to my neurologist with no answers, my physician is very heart broken.

At my appointment, my neurologist tells me she has one last treatment option for me—intravenous immunoglobulin (IVIG). She tells me this is the “Hail Mary” and is essential for the treatment of my condition. She says time is running out. I don’t have any other options left. I listen to the doctor’s words, but I disagree with her. I do not believe IVIG will be of any benefit to me. In fact, I suspect I most likely will have an adverse reaction to IVIG. I react to animal protein, and IVIG is antibody protein collected from thousands of donors. Protein from other people...that seems like something my body will reject.

Despite my foreboding, I set up appointments for the five days needed for the infusions. I pray and pray to God for guidance. I cannot dismiss the darkness which looms over this procedure. I cancel my IVIG appointments. On the day I am to have a follow-up appointment with my neurologist, I receive a call from her office. They are calling to cancel my appointment because I did not get the IVIG infusions. I protest getting the infusions. The receptionist immediately connects me to the neurologist. (I am shocked I am directly transferred to the doctor and am able to speak with her.) The physician again goes on and on how IVIG is my only treatment option. I need these infusions to save my life. If I refuse to receive the IVIG, the doctor informs me, she will not continue my care. "If you do not get the infusions, I will no longer be your doctor." Not wanting to find another neurologist, I reluctantly agree to get the IVIG.

I push off getting the IVIG until just a few days before my next appointment with my neurologist. I have much uneasiness and dread concerning the IVIG infusions. I pray to God that if I have a bad reaction, He will get me through it. I pray for strength and courage to carry forth.

When the day for the first IVIG infusion comes, I am strangely at peace. I am not nervous or anxious. I feel as though I am enveloped in an embrace of comfort. I enter the infusion center and check in. A nurse takes my vitals. Another nurse spots an open chair directly across from the nurses’ station. Despite the oodles of other open infusion recliners, she says I am to have this chair. She says she wants me to be close by the nurses since I have a ventilator. I am grateful for this chair. I thank God for placing me me so close to the nursing staff in case anything might happen during the infusion.

The nurse wheels me to the recliner and begins going over the procedure with me. I am carefully keeping an eye on the clock. I want to get this infusion done as fast as possible and get as far away as possible from this place as I can. Despite the calmness which fills my soul, an evil wickedness seem to encompass the infusion center.  A deep, dark nightmare is about the begin.

(Link to Part Two click here)