Eye, eye, eye!

The last week of October, I noticed I was having terrible eye pain which radiated to the back of my head, down my neck and to my shoulders and back. I was also dizzy, and objects seemed to oscillate back and forth, never really in focus. As I was pondering the pain, I suddenly knew what was the cause. My eye muscles must have weakened, and I needed different prism strength in my glasses. This exact same thing has happened to me in October 2016, October 2015 and October 2014. Armed with this information, I called an eye clinic which hosts six different eye doctors. When I called, I just asked to see the doctor who had the next available appointment, which was four weeks away.

Today was the magic day. I was excited I would soon have a new prescription and would be seeing again soon without pain, dizziness and double vision. When the doctor saw me, my body was shaking due to fatigue. The doctor asked about my tremors. I briefly explained I had mitochondrial myopathy. When the doctor heard I had mitochondrial myopathy, he quickly told me there was nothing he could do for me. "You have a muscle disease. Your eye muscle strength will change throughout the day." I already knew this, but I also know that my current glasses need different prism strength and possibly a different refraction strength. I am dizzy, see double and have a headache from the moment I wake up until the moment I go back to sleep. These exact same symptoms have occurred in the past and have been resolved with a new eyeglass prescription. Without ever doing an eye exam, the doctor pushed me out the door, insisting there was nothing he could do for me.

I was a bit in shock as I left the doctor's office. Did the doctor really not check to see if the prism in my glasses was correct? Did I just waste my yearly eye exam visit on a doctor who did not perform an eye exam? I was utterly defeated, felt sick to my stomach and knew I had just wasted a precious afternoon's worth of energy.

I wish there was some happy ending to today, but it seems today was just another day with another bad doctor's appointment. Now, I have to ponder if I can endure these symptoms for the next 12 months until I can schedule another eye exam through my insurance. I doubt I can last that long. I feel as though I have been doing everything I can for the last month to patiently wait for this appointment. I guess I will just keep praying. Praying for a miracle. Praying to have relief from these symptoms soon.

Tuesday will be too late

It was a cold December morning several years ago, when I was lying in bed snuggling down beneath lots of warm blankets. Resting in the twilight slumber, half-way between awake and asleep, I heard a voice. "Her life force is going out of her. Tuesday will be too late." Before I had a chance to understand this message, suddenly the warmth and sense of security which embraced me was quickly taken away. I felt as though I had been pushed off a tall building and was free falling straight to the ground. Instantly, my heart was racing, I was gasping for breath and a cold sweat was pouring down my face. I sat bolt up right, trying to regain my composure. The words, "What was that!?" rang through my head. I tried to shrug off the incident, but the words haunted my mind. Whose life force was going out of her? Today was Monday...that meant something was going to happen very soon.

I got out of bed and tried to go through my daily routine. I suddenly thought about a family friend, Bea. She was in a nursing home about 20 minutes from our home. Was she the person who was going to die? My mom and I had planned on visiting her tomorrow, but if the voice was correct, tomorrow (Tuesday) would be too late. I asked and almost pleaded with my mom to go visit Bea. My mom informed me that she did not feel well, and tomorrow she had a doctor's appointment which was down the street from Bea's nursing home. We would visit Bea the next day. Knowing the discussion about visiting Bea was over, I tried to go through the rest of my day as normally as possible. I kept praying Bea was ok and that she would be alive when we visited her.

The next day, I nearly sprang from my bed, hurrying to get ready to go visit Bea. I was ready in a flash and was pushing my mom out the door. When we arrived at the nursing home, I was relieved and overjoyed to see Bea, alive and happily sitting in her room. During our entire visit, I kept thanking God and rejoicing Bea was alive. Bea looked in great shape, and my fears about her dying were quenched.

For the rest of the week, I pushed aside the entire incident about hearing the voice and about being in a panic about Bea dying. I went on with my life, burying the incident into my memories.

The following Monday night I was extremely tired. At 7 p.m., I retired to bed and prepared to go to sleep very early. Around 7:30 p.m., my mom came into my room. Her face was full of deep sorrow, and giant tears were rolling down her face. She told me she had just found out her aunt was very sick and was in a nursing home receiving hospice care. My mom said she could see I was ready for bed and said we should go visit my aunt in the morning. (My mom had recently been in a car accident and was unable to drive. If she wanted to go anywhere, I was her chauffeur.) Without a moment's hesitation, I told my mom we would visit her aunt tonight. I just needed some time to change out of my pajamas and into street clothes. In less than a half an hour, we were in the car on our way to visit my mom's aunt.

When we arrived at the nursing home facility, I dropped my mom off and parked the car. I was extremely tired and told my mom I would wait in the car. When my mom arrived in her aunt's room, my mom's aunt opened her eyes when she heard my mom's voice. After a brief while, her aunt closed her eyes; she could not speak, but rested quietly. My mom stayed for about a half hour. My mom then said good-bye and left.

The next morning, my mom came into my bedroom. Again, her face was tear-streaked and tremendous grief radiated from her body. My mom informed me that her aunt had passed away at 2 a.m. The last time her aunt opened her eyes was the night before when my mom came to visit. My mom left my room. I immediately thanked God that I had gotten out of bed to drive my mom to the nursing home.

As I was praying to God, suddenly the words from the week before resonated in my mind. "Her life force is going out of her. Tuesday will be too late." "Oh LORD!!! Today is Tuesday! Early this morning my mom's aunt died. Her life force did go out of her! If we would have waited until this morning to visit my mom's aunt, it would have been too late!!! Oh my! The message was from You, LORD! Thank You for giving me the message. Thank You! I know I got out of bed last night without hesitation because I must have been thinking about Your message. Despite my fatigue and exhaustion, I knew I had to drive my mom to the nursing home. Our LORD, thank You! I know how much the visit meant to my mom. Thank You for allowing me to be Your instrument. Thank You for allowing me to hear Your voice." As I ended my prayer, tears streamed down my face. I was so grateful God felt it necessary to deliver this very important message to me. I was so grateful I had heeded His words. Words cannot describe the immense love and gratitude I felt at that moment to God. After a long while, I collected myself. I needed to leave my room and comfort my mom. I needed to share God's love with my mom.

Forever Grateful--Precious Jude

On March 28, 2014, the Grace family welcomed a precious newborn baby into this world. Jude, born at just 32.5 weeks, was practically perfect in every way except he had bad lungs. He started his life in the NICU and had a trach placed when he was just six weeks old. After struggling to breathe for nearly two years, God gave Jude the gift of a double lung transplant for his second birthday. It seemed Jude was on the road to better health. He had a joyous laugh and was the light of the room. What an incredible blessing Jude was to everyone he met.

In September, Jude suffered a series of health setbacks. Courageously, his mama kept updating his Facebook page to continue to let all those who loved Jude know about Jude's health. With each bump in the road, I know so many people prayed Jude would recover. And like any rambunctious 3 year old, he did just that. Unfortunately, at the end of October, Jude contracted adenovirus. After bravely fighting for several weeks and having the best doctors in the world as his medical team, God called Jude home on November 14.

As my heart mourns for Jude's family, I just wanted to say thank you. Thank you for sharing your story. Thank you for sharing photos and videos of Jude. Thank you for being so grateful. Over and over again on Facebook, gratitude was expressed for Jude's lung transplant donor. Your gratitude and kindness have deeply touched me.

Moreover, I somehow feel a connection with Jude. Sixteen months ago, I developed significant breathing issues and was subsequently diagnosed with respiratory failure. In May, I received a tracheostomy and was started on invasive ventilation. I have been made acutely aware of how fragile life is and how diligent one must stay protected from infections. (I am in the midst of fighting off pneumonia, my fourth bout of it in four months.)

Although I am terribly sad Jude is no longer with us, I cannot help but feel joy knowing Jude is in heaven--a place where his lungs are perfect; a place where he can run and jump and laugh without having any breathing difficulties. So now as we celebrate Thanksgiving, I cannot help but send up many prayers of thanksgiving for you-all. I thank God for lending us Jude. I thank God for your gratitude. I thank God for giving you-all courage through so many turbulent times. I thank God for technology--for photos and videos--which will help keep Jude's memory alive. I also pray you-all find comfort and peace in the days, weeks, months and years to come. Thank you for being part of my life.

"Be worried for nothing; but in everything by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passes all understanding, shall keep your hearts and minds though Christ Jesus." (Philippians 4:6-7)

Stop! I have POTS!

Having a relatively unknown chronic medical condition such as postural orthostatic tachycardia syndrome (POTS) can be very frustrating while in the hospital. With POTS, my blood pressure sky rockets, and my heart rate becomes extremely fast upon standing. At rest, my heart rate and blood pressure are normal or only slightly elevated. Unfortunately, medical staff see my normal blood pressure and heart rate at rest and withhold my beta blocker--a drug used to lower heart rate and blood pressure. This is all fine and dandy, but if I sit up or attempt to stand up, my heart rate can soar to 150-190 beats per minute and my blood pressure can spike to 180/110. The purpose of taking the beta blocker is to lessen the wide swings in blood pressure and heart rate. Unfortunately, medical staff can never seem to grasp this concept.

Today, physical therapy came to my room to rehabilitate me back to my state of health prior to being hospitalized. (I have to chuckle because I spend most of my time in bed while at home. So, when I am hospitalized and spend most of my day in bed, it is no different than when I am at home.) Of course, they came to my room during the early morning rays of the sun. The physical therapist wanted to take a walk around the hallway. This is a very bad idea on so many levels.

Mornings are the absolute worst time of day for my POTS. My heart rate and blood pressure tend to be extremely high in the mornings and gradually lessens throughout the day. Additionally, I wear compression stockings which provide a high amount of pressure on my legs to keep blood from pooling in my feet. The more blood that is able to return to my heart, the less severe the POTS is. (In the hospital, I do not wear my stockings. It is usually too much of a challenge to work around all the monitors, IV lines and other equipment without getting the stockings snagged on something.) Also, being in the hospital means I am not able to drink as much as I need to maintain high blood volume. I drink about 4-5 times as much as a normal person does to maintain my blood volume. In the hospital, my fluids are usually restricted to what should sustain a normal person. This means I am usually very dehydrated. Additionally, being in the hospital means I am not able to eat my normal diet filled with lots of salt. Like drinking lots of fluids, eating lots of salt helps increase my blood volume, which leads to less severe POTS symptoms. Finally, fatigue plays a big part in my POTS symptoms. Lack of sleep or doing too much activity or simply being run down from stress can cause my POTS to be more severe.

So taking this all in to consideration, my physical therapy session was a waste of time. My nurse refused to give me a beta blocker this morning. Add in dehydration, low salt intake, no compression stockings, lack of sleep, lots of stressful tests and the early time in the day, I made it about ten steps before I felt as though I was going to pass out. Back to bed I crawled with a massive headache. Once in bed, my heart rate was 120 beats per minute, and my blood pressure was 140/100. My physical therapist said she would return again tomorrow for another session. Oh boy, I can hardly wait!

Praying

Dear Lord,
Thank you for listening to my endless prayers. I know, sometimes they are just vain repetitions, but I feel as though I need to pray for these same people over and over again. I know in the book of Ecclesiastes, it states let your words be few when before the Lord, but my heart often overflows with things to say to You. Also, it is hard to be short in prayer for I feel like the more I say, the more I plead my case, the more inclined you will be to hear me. I know, this is dumb human logic, but it is hard to break free from human wisdom. For You know the thoughts of my heart even before I mutter a single word to You. And for this, I cannot tell You how grateful I am. The endless prayers which have been answered even before the prayer left my lips overflow my spirit with great joy. Thank You!

And now Lord, help me grow in prayer. I have read in Your Word many times to be mindful of what I pray about. For example, never pray for patience because the answer to that prayer is a very long time of waiting. I also know from Your Word, to be mindful of what you pray for because often the answered prayer is not always what one had in mind. I often think about Hezekiah and his prayer for health. Lord, You granted him his wish; however, what terrible sorrow came from that answered prayer!  Hezekiah turned away from You, had a son, Manessah, and raised him in a godless manner. The end result: when Manasseh became king, he was the bloodiest king in the history of Judah. He killed so many people, historians write, that the streets of Jerusalem continually flowed red blood from Manasseh's constant slaughter of his people.

So, Lord, as I lift up my prayers up to You tonight and on all occasions to come, let my prayers come before You with a sincere heart. May no evil consequences come from the utterance of my ignorance. May everything which proceeds before You be pure, as only a mere human can make anything pure. If I utter things which are full of malice or wickedness, please forgive me. I am constantly falling short of Your glory. May Your will be done on earth as it is in heaven. May those I lift up before You receive mercy and grace. Thank you for listening to Your servant. In Jesus' precious name I pray. Amen.

A Lifetime of Waiting

After having countless doctors appointments and constantly having to fight for every morsel of medical care, today everything I have ever fought for came to fruition when I saw a mitochondrial disease specialist. For so many years, I have been researching and making my own path through a medical world which rarely recognizes many of my medical conditions. When epigastric pain left me in a tight knot of severe pain, I searched and searched to figure out the pain was caused by my gall bladder. I then spent the next week trying to convince doctors my gall bladder was infected and needed to be removed. When another round of severe epigastric pain hit, I carefully documented what caused the pain, which ended up to be fat and protein. After extensive research, I discovered I had chronic pancreatitis and had problems with my bile duct sphincters. Again, it was another tooth and nail fight until I was able to convince doctors I needed some of my bile duct sphincters cut.

The list could go on and on of medical conditions I self-diagnosed and then had to slowly, carefully, lead my doctors to the correct diagnosis. Every symptom was an epic battle to get medical treatment. Eventually, the battles became too hard to fight; my body was growing too weak to continue the constant battles. After losing several of my favorite doctors, I simply stopped seeking medical care. I tried as best as I could to find natural remedies to my ailments and tried to live with the rest of my symptoms. Reluctantly, after my health took a nose dive and I developed respiratory failure, I finally decided to seek out medical treatment for mitochondrial disease.

Today, everything was different with my Mito doctor. Instead of me having to justify all my symptoms, the doctor was flabbergasted that my plethora of symptoms did not signal red flags that I had mitochondrial disease back in 2010. (I, however, was the one who put together all my complex symptoms and figured out I had mitochondrial disease. Then, I had to carefully lay out my medical case before doctors. After many failed attempts, I finally was "diagnosed" with Mito.)

My appointment today makes me want to leap for joy but also wallow in grief. The doctor said it was not "if" I had Mito, but what type of Mito I had. Although I have been fighting so hard to get a Mito diagnosis and to get a Mito specialist, now that I had both, suddenly my wacky medical hypothesis is now reality. I think I have always hoped that my medical condition was some mysterious ailment with a secret known cure...but now that I have Mito, a condition which has no cure, all hope of ever recovering and chasing after my dreams has vanished.

I have known for a long time that getting an "official" diagnosis could be like getting a death sentence. I often think about my friend Milly. When she found out her type of Mito causes heart failure, she gave up living. When she developed respiratory failure, instead of getting a tracheostomy, she continued using non-invasive ventilation. Ultimately high carbon dioxide levels built up in her body, and she went Home to be with Jesus.

Now, the same reality is facing me. Since genetic testing is not covered by my insurance, my doctor wants to do a muscle biopsy to nail down what type of Mito I have. As much as I would love to know what exactly is ailing me, I know this information will absolutely crush my spirit. I fight hard to get through each day, but to know that I might be at risk for developing some further complication of mitochondrial disease is more than I can handle. My doctor promises that the testing will help them treat me and guide their medical plan. But as much as this information may be "helpful", I much prefer leaving everything to God. I much prefer to be in the dark about what the future of my health might be. When I am lost and cling to God, only then can I see His abundant mercy, kindness and goodness. I would much rather rely on God and have Him lead me than to put confidence in man and science.

Today did also bring much joy. Now, I have a doctor and her office staff who will fight for me to get the proper medical care. I am no longer a one-man show. Oh, how wonderful it is to actually have medical professionals supporting me! After fighting for so long and doing endless research, I can finally take a moment to celebrate all my years of hard work! Praise be to God!

Funny Story

This afternoon, I noticed my dad fervently working away in his office. I was curious what he was working on. So, like any good daughter, I ventured in to his office to inquire about my dad's latest mission.

My dad began telling about a lock he was trying to figure out the combination to. He told me the usual method he goes about trying to retrieve a forgotten combination, but unfortunately, his method did not seem to work on this lock. He then told me about another method he tried following a video he found on YouTube. Again, that was a failure. Next, he was telling me about the latest video he was watching. He was trying to walk me through all the steps.

As I was looking at the look, I thought to myself, "That lock looks very familiar. I wonder where it is from?" So, once my dad took a pause to catch his breath, I casually asked, "Where is the lock from?" My dad replied that it was a lock from an old storage shed. I then happily quipped, "I remember a few of those combinations." I proceeded to give him the first combination that popped into my head. Unfortunately, the lock did not open. I then remembered another combination. When my dad reached the last number in the combination, the lock clicked and sprung open when my dad pulled on it! My dad looked in dumb-founded amazement at the lock and then at me. I, on the other hand, burst into uncontrollable laughter! My poor dad had spent most of the afternoon pain-stakingly trying to figure out the combination...and the answer to his problem was just a room away!

I love when God makes the seemingly impossible possible! May joy and laughter fill your day! "Make a joyful noise unto the LORD, all the earth: make a loud noise, and rejoice, and sing praise" (Psalm 98:4).

Who can be "Grey" when I am this excited!!!?

For many weeks, my friend in Los Angeles has been posting clues as to what show her son, Brandon Tyler Russell, will be guest starring on. I have been patiently waiting for the weeks to pass to find out the answer to this question. To my delight, it has been revealed he will be guest starring on the 300th episode of Grey's Anatomy on Thursday night on ABC!!! I am so thrilled. Although, I was super excited to find out he was cast as a guest star on a top-rated television show many weeks ago, Grey's Anatomy is such a huge hit and holds a special place in my heart.

When the show premiered in 2005, I was instantly a fan. I LOVED the medical aspect of the show. There were so many challenging medical cases, and there were so many interesting patients. No two medical cases or patients were ever alike. I also greatly enjoyed the show profiling the life of first year medical interns. The interns always had to do the most degrading jobs and were constantly climbing a steep mountain, trying to learn and perfect new skills without making any mistakes (and thus avoiding being yelled at by their attending and senior residents).

I watched the show religiously every week for the first three seasons. Then, work and school got in the way. After missing most of season four, I tried getting back into watching the show, but it was too hard. There were new characters on the show, and old characters had left. Complex storylines had evolved which were too challenging to try to figure out with missing almost a whole season. So, I stopped watching.

But now, the 300th episode promises to bring back old characters to the show, either in spirit or in the form of look-alike characters. I loved the original cast. Although I do not watch television (and have not watched tv in several years), I am overjoyed to set aside part of my Thursday night to watch a favorite old show and to watch an incredible, talented young actor guest star on such a popular show. Brandon Tyler Russell will be amazing! I pray this role will lead to many more.

Things I learned today...

1. Snakes do not like to be screamed at.
2. Getting hit in the head by a falling snake hurts...I hope/don't think I got bit
3. It is hard to kill a snake with a shovel

Today, as I was leaving our kitchen to enter the patio, I opened our patio door. Bam!!! I got hit on top of my head by something falling. Now, I have had a fear for a long time that a cockroach or some other critter would linger on the top of our patio door and when you open the door, it would fall or run into the house. Praise be to God I did not look up like I usually do, or I would have had a rattlesnake on my face!!!

Yep, when I opened our patio door, a rattlesnake fell down on top of my head. Now, my reaction was the same as any rational person. I looked down and started screaming when I saw the snake. It was about 20 inches long. I quickly closed the patio door, but then I knew I had to kill it because who wants a rattler on their patio. I went back out and saw where the rattler was, right up against the house. I then went to the garage to find a shovel. For what it is worth, a wide shovel is better for killing a snake than using a a narrow shovel. I just grabbed a shovel, which was narrow.

I then made too much noise on the patio, and the snake curl up in a tight ball...again this makes killing the snake hard. I started to erratically thrust the shovel down on the snake. I cut off the middle of its body. A few more thrusts, and I got closer to the head. Finally the snake was disabled enough, I was able to chop off the head.

I then went inside to look for my boots. I did not want to go on the grass without proper foot protection. After putting on my boots, I went back out on the patio. I picked up the snake with the shovel. I then quickly raced toward the water's edge. The water is still very low and a long ways from our lawn's edge. I tried to throw the snake into the water, but it slipped off the shovel. It is somewhere in the rocks which line the water's edge.

Now, I am recovering from the rush of adrenaline. My head aches where the snake hit me. I did not feel a bite or a sharp pain...just a dull pain like someone hit me over the head with a baseball bat. I will look at my head in a bit when I am more stable to see if there is a bite mark. I think if I would have gotten bit, the snake would have latched on. Instead, this snake just bounce off my head on to the patio.

That is the latest news from the wild frontier! I am going to lie down. My head really hurts!