Still A Valley Girl

 I grew up in the 80's, like totally. You may know what a valley girl is. The term originated from the San Fernando Valley in California, and it filtered all the way to this midwestern girl in the Chicago suburbs. The 80's were totally tubular!

I was thinking of how I was, like, a valley girl, like, in high school. I started to think that I am still very much a valley girl today, but in a much different way.

When we talk about going through a valley in our life, we tend to think of a cold, dark place of isolation and loneliness and, frequently, even pain. However, if I were to tell you that Chad and I took a vacation to the Grand Canyon, and spent a week camping out in the valley, it might seem fun and exciting! We would face challenges, even difficult ones, but overall, I think our experience would be positive. We may struggle to find food or start a fire. Outdoor bathrooms and tents might be dirty and uncomfortable.  The rough terrain could make hiking down into the canyon and back out quite a lot of work.

I would like to think that our time there, together, would also be one of rest and closeness. Being alone with someone for a long period can really bring you closer. Our journey through life, even when difficult, can be very much like this.

God tells us that He is with us in the valley, and we need not fear (Psalm 23). While the valley can be challenging and unpleasant at times, it can also be a place of refreshment for the weary and communion with God. 

I am definitely still a valley girl, as I have spent quite a lot of the last few years feeling like I am at the bottom of the Grand Canyon. I am thankful for a God who is there with me, One who allows me graciously to see the beauty in the canyon's sides as I look up towards heaven. I have found some of the sweetest times of fellowship with the Lord comes in those moments when I am camped out at the bottom, seemingly alone.

This past year has gone remarkably well, and I am so grateful for the lessons I have learned in the valley. I pray that 2024 continues to be a year filled with less pain and fewer trials, but even if it isn't, I know that God will be by my side strengthening and guiding me as I look once again to climb out of the valley.

 

Happy New Year to you all! Keep looking up to the One who holds all who are His in His hands, and never lets them fall.(Jude 1:24-25; Isaiah 49:16)

I will leave you with one of my favorite songs. "If You Want Me To" by Ginny Owens.

Until Next Time

~Shari

OUCH!

All of us 1980's kids, probably remember when that little alien came on the scene. No, not ALF, the other one. You know who I mean! The 1982 film, E. T. the Extra Terrestrial, was a heart warming story of friendship. Of course, thinking of friendship with an alien sounds, well, alien. If you haven't seen it, go now and watch. I'll wait.

Aliens were about the only thing that didn't happen this past year (although the US military has acknowledged some unidentified flying objects, and leaked video footage, so who knows!) The past year and a half have been difficult, to say the least. A global pandemic lead to unprecedented shutdowns. Illness, death, lost jobs and businesses, isolation, riots and looting, and some natural disasters as well, lead to day after day of seemingly bad and painful news. No one remained untouched by these recent events. We have all suffered in one way or another.

Today in Illinois, we officially "reopen" without any pandemic restrictions, for the first time since March 2020. There is reason to be excited about getting back to normal, and yet some of us might not be ready to throw away our masks and pretend like none of this happened. I have shared in previous posts about the need for love, grace and patience as we deal with each other. This has all been painful and traumatic, more so for some than others. 

You all probably know my love for all things medical. I have my "armchair MD" degree, mostly due to my own health issues, and my love of research. Like most other relevant medical topics in my life, I kept up with the research on COVID-19 as it became available. You are well aware of the need to find reliable sources for all of our news. Ignorance and untruth abounds on the internet! We ALL had to weigh the facts, consider our own health and family situation, and make difficult choices these past 14+ months. 

If you have followed any part of my health journey, you might know that we have been to Mayo several times, and are set to return again this September. I am currently on a "drug holiday" (as the doctor called it), and not taking any treatment. I am currently going through a particularly difficult, painful, downhill path in my disease process the last couple of months that has me reevaluating my treatment options. I hurt everywhere! Widespread joint and muscle pain, as well as worsening neurological symptoms make me think it may be time to consider if more medication is necessary.

In the past, I have had to weigh a number of factors in deciding which treatment to try (or not). My disease is rare, and so the research is sparse, ongoing, and thus hard to decipher at times.  It is not easy to make a choice to take a chemotherapy drug that comes with lots of health risks, when the scientific studies were only able to try it on a handful of patients. Many of you have probably made decisions that seem to have no "right' answer and it can be heart-wrenching, or perhaps have disastrous consequences. This new coronavirus pandemic gave us all a taste of what it is like to have a disease no one knows much about. Studies are needed, but take time, and leave a lot of unanswered questions as we make decisions about our health.

It is normal for us to have our emotions and feelings sway our decisions. It is hard sometimes to trust the facts. The most recent research of COVID-19 and the mRNA vaccines seem to suggest that they are very effective at preventing serious illness and death, even with the current variants.  (I recommend CIDRAP for trustworthy research, and a great podcast too) After 14 months of caution, worry, masks, bad news reports, shutdowns and everything else, it can be very difficult to set aside the difficult emotions we have had, and trust the science. Some will be totally comfortable jumping in the deep end of the pool. Others have never gotten out of the pool. Still others are slathered in sunscreen, and just starting to dip a toe in the shallow wading pool. We need to extend grace to each other as we wade back into life, at our own pace. Encouragement, support and love are called for here, not judgment and ridicule!

God made us emotional beings. We should feel things deeply, however we cannot trust our feelings to be the basis of our decision making. Feelings may tell us it is unsafe to drive after watching hours of car crashes, and reviewing accident data. Science and engineering data may help us to trust the braking system in our cars. Those two things are seemingly at odds with each other. Most of us will trust the car to work as we expected, and yet many might still be anxious while driving or being a passenger in a vehicle. We have to move past emotion in many situations. The Bible tells us that "For we walk by faith, not by sight." (2 Corinthians 5:7).

That is not to say that we shove our emotions down deep and ignore them, but we also can't trust our emotions completely. I feel lots of pain, and that makes me feel sad. I feel like I can't do things I want to do, and that makes me feel like I can't contribute in a meaningful way. I could keep going with the "I feel" sentences, but what I know is that God is faithful. God is sovereign "and we know that for those who love God all things work together for good, for those who are called according to his purpose." (Romans 8:28) He is trustworthy, my feelings are not. I have to function in the space where I feel all the feelings, but can still trust Him enough to step off the diving board in faith, without drowning in my emotions.

I am struggling right along with all of you. It has been a ROUGH year in so many ways! Pray that we all learn to trust God more fully, love each other more in humility, and forgive others as we have been forgiven. Pray for those who have not yet trusted in Christ alone for salvation. Pray we all suffer well, in a manner worthy of our calling, and in a manner that brings glory to God!

Until Next Time

~Shari

Counting Our Blessings

I should be used to the frequent monkey wrench being thrown into our lives, and the past couple of weeks have been no exception! I called my urologist back on Friday, January 22nd to tell him I think I was passing a kidney stone. (This was #21 for me, so I keep him on speed dial). If you have been getting church prayer requests, or FB updates, you may want to skip to the end and see where we are now.

He ordered some meds and testing to confirm my diagnosis (I was correct), and I settled in at home praying that I could pass this stone without much additional intervention needed (I did).....and then came the monkey wrench. On Thursday, January 28th the doctor called and said that my right kidney (not the one that was hurting) showed a decent sized stone (making this one #22). He said that he would prefer to proactively schedule lithotripsy (a shockwave ultrasound procedure that breaks up the stone into smaller sand-like particles). I REALLY didn't want to, because I have done it a couple times before, and had some discomfort. My pain was better, as I passed stone #21, and wasn't looking forward to undergoing more treatment, especially during the pandemic. After a lengthy debate with my doctor, who stressed that if we did nothing and waited, he placed odds at 50/50 that I could pass a stone this large without intervention. We didn't really want it to become an emergency, so I relented and scheduled the lithotripsy for Tuesday, February 2nd.

The procedure went well, and I was rejoicing when the doctor said a stent was not necessary. They are very irritating and unpleasant, so I felt like I dodged a bullet. The next couple of days I was resting at home, and coping with the pain but it gradually worsened. By Wednesday overnight, I told Chad something wasn't going well, as pain was getting out of control, and urine production had slowed. By Thursday morning, pain level was at 10/10, even with oral pain meds I had left, so off to the emergency room we went. After a 3 hour wait in the waiting room, writhing in pain, moaning and crying. Trust me, I have a high tolerance for pain and low tolerance for drawing attention to myself. For me to be in a crowded waiting room making a "scene" is a good indication of my level of misery. We had a new CT scan and quickly realized a larger chunk of my now broken up #22 stone, combined with my "smaller than normal anatomy", had wedged itself in the ureter just outside the kidney, and was blocking the flow of urine.

We love analogies and visual aids in our house, mostly Chad likes them when I try to communicate nerdy science/medical info. This week has been the following two charts. One indicating my pain level:

The other one helped indicate the problem with the kidney stone blocking my kidney function, made specifically for the beer lover, like Chad.  haha 

I am thankful to report I am currently back to a blonde ale coloring, hovering only around a 3 on the pain scale with at home meds. Yay!


Thursday, as I sat in the ER waiting room, praying for mercy for myself, I heard one announcement after another, that reminded me that I am not the only one suffering. During that time, 5 or 6 ambulances incoming, 2 stroke team alerts, and a code blue. God gently reminded me that not one of us expects today to be a day of pain or loss, but for many it will be. So, I began to pray for those other families who were worried and waiting, separated from their loved ones during covid also.

Much to our dismay, the ER did the scan as the doctor wanted, gave me a dose of IV pain meds that brought from a 10 to about a 5, then promptly sent me home all in about 2 hours. They refused to give me a pain medication prescription, due to the "opioid epidemic", and sent me home knowing I had only 3 pills left. I was told to take Tylenol if needed, which is laughable! (this whole opioid topic is a much longer rant, but I will just say as a chronic pain sufferer, millions of patients are being denied drugs that once made their lives livable, because some have abused them. Hopefully they start to come to a more realistic stance and let these pills help those who need them)

The urologist added me to his schedule for surgery on Saturday to unblock my kidney. He was happy to do this, in frigid weather, on his day off, and I am truly thankful. Unfortunately, when the at home pills ran out, so did my ability to tolerate being an 8/10 on the pain scale by Friday after lunch. So the doctor sent me back to the ER to be admitted to the hospital, where they could "better manage my pain" at CDH, until the procedure Saturday. (Sorry to keep ranting, but literally a prescription for a handful of pain meds, could have kept me more comfortable at home than a night in hospital with IV morphine, which is a MUCH a stronger narcotic, and the whole thing makes no sense to me)

My wait time in the ER at Central Dupage was only about 30 minutes. It was just long enough for a homeless couple to come in, asking to be tested for covid, saying they were seeking shelter from the brutally cold temps outside. God once again opened my eyes to those suffering around me. In the midst of all of this, I have also chatted with dozens of healthcare workers, who all shared a sense of fatigue in this pandemic, and I knew I haven't prayed enough for all of them either.

God really used the last couple of weeks to reveal my own failings, and to reveal the love He has for us, using others to be His hands and feet to carry that love to us in a tangible way. I realized my own health issues can be overwhelming, and make me self-centered to a large degree. I spend a LOT of effort just getting through the day with my normal health struggles. Times like these just make the facade crack and reveal, once again, I am still striving, planning, trying to manage it all in my own strength, feeling that I have to keep all the plates spinning in my well organized little world without help. God graciously opens my eyes to see the struggling, the hurting, the needy all around me, and wake me out of my comfortable, scheduled life.

Today I am beyond thankful to have a beautiful home with heat (upon waking this morning the temperature outside was -15 with wind chill "feels like" temp of -35). I am grateful for the medical staff who have worked so hard to provide excellent care. I am reminded to pray fervently for so many others. Let us praise God for working in our hearts, getting our eyes off ourselves and our problems, and bringing us to our knees in prayer and reliance upon Him.

He has also dealt graciously with my sin. I am very "self-sufficient" (in my mind anyways), and accepting offers of help doesn't come easy. I don't want to be a burden, or pitied, or an inspiration, and so I tend to just plug along without help, trying to blog my story to remind myself and everyone else that ultimately it is God, and Him alone, who deserve all the praise and glory! He alone is our source of provision and strength. This week He has sustained me with so many words of encouragement (prayers, texts, emails and calls) and many offers of help. (Incredibly thankful for the church Meal Train page they set up, so I don't have to worry about meals for the next couple of weeks) I am overwhelmed by the outpouring of love for Chad and I (and even our adult children Rían and Katherine). Truly, from the bottom of our hearts, Thank you! 

From family, our closest friends, all the way to distant acquaintances, you all showed up for us in the midst of a crisis. I hate feeling like a burden on someone else's busy, stressful schedule, many of whom are very likely suffering in their own way. I have NOT been made to feel like a burden, rather the opposite as so many of you wanted so badly to "do something" and this was a way to bless us and serve in a way that we all experience God's goodness. 

God has really healed my heart to see how we can set aside our differences, "being there" when needed, and focus back on the truly important things. I have seen that suffering has a way of healing in these ways and more. God has been at work in my heart, and given me a glimpse of that heavenly unity that awaits ALL of those who have placed their faith in Christ. Unity is definitely not a word defining our current cultural climate, but we still have hope that is found in Christ.

I pray that each of us might look to God in faith, and repent, placing our faith in Christ alone for our salvation. Always remembering that He alone is in sovereign control over our lives, in good times and bad. Join me in praying for all whose paths I crossed in a brief way this week, and glimpsed a bit of their suffering as well. None of us wake up thinking this will be the day that our world will fall apart with an ambulance ride, a stroke alert, code blue, or even homelessness, but for many people that will be their day today, and we all need Christ. 

~Until Next Time

Shari

Undone in Twenty-One

The book of Job, in the Bible, is my favorite. For those of you who may be unfamiliar with the story of Job, he was described as a "blameless and upright" man who "feared God and turned away from evil." He was a wealthy landowner, who had several children, and a seemingly close family. He prayed for his children regularly. While I highly suggest you read through the book, especially the early chapters to get a feel for Job's life, I will summarize by saying that Job had a very good life. Then God allowed Satan to tempt Job. I will just stop for a second here to explain that NOTHING that happens in our lives is outside of God's control. Satan needed permission to test Job, but to be clear it is Satan doing the tempting, not God. Satan assumed as soon as things started going south for Job, he would curse God and turn from his faith. (Spoiler alert: Satan was wrong)

Job had a series of catastrophes occur. Raiding troops, fire and wind storms took his livestock, his servants, and then Job's children. While he mourned such great loss, he praised God and trusted Him saying, "The Lord gave, and the Lord has taken away; blessed be the name of the Lord." Despite all that happened, Job trusted God. He knew that all of life's blessings come from God's loving hands, and he knew that God was sovereign over all of it. Satan tried harder and struck Job with boils and sores that itched. He was miserable, scratching his wounds with broken pottery. Job still did not curse God, even though his wife urged him to "curse God and die."

I won't pretend that my life compares with Job's. By some standards, I may live an "upright" life. Compared to much of the world, we are "rich". We might be seen as having an abundance like Job had. We have family we love, great friends, a nice house, and good neighbors. Thankfully I have a supporting husband who has encouraged my faith, not pushed me to abandon it, as Job's wife did.

Unlike Job, I have not known the loss of children, or all I possess. Though this past year brought us a long term unemployment, which has eaten our savings, it pales in comparison to Job's immense loss. Also unlike Job, I have discovered a misplaced trust in our security. Chad has worked hard and we saved up for future emergencies. We were trying to be good stewards of all that God has given us, and savings is a great idea (I do not mean to imply that it is wrong). I only bring it up to confess that I allowed a false sense of "self-security" to creep in by growing the balance of my savings, only to have to swept away like Job's possessions. What are we left with when that which we trusted in is gone? 

I was recently reminded of a story from Exodus chapter 16. The Israelites, whom were just delivered by God from Egypt, grumbled and complained that they were brought out to the desert to starve to death. God gave them manna from heaven (literally showered them with sweet bread). They were instructed to take each day the amount they needed to sustain them for that day (the only exception being that they could gather an extra serving so they didn't work on the Sabbath). God provided for them, even though they were ungrateful. He gave them bread, but they decided they wanted meat. So, God gave them meat, SO much of it that they gorged themselves until they threw up!

They gathered more manna than they needed for one day, trying to "save it up" and make sure they had extra (their own little emergency fund, if you will). They had been warned not to gather extra, and when they awoke the next day, they found it stinky and worm infested.

I have not gone hungry (perhaps the opposite is true during this covid period). My "grumbling and complaining" was more of a "whimpering and pleading" and always about my health. It is not the nerve disease (CIDP) or even the paralyzed leg that wears me down. It isn't the inability to go and to do the things I once enjoyed.  Most days it isn't even the chronic back and neck pain. It is simply the "one more thing" that has me in sackcloth and ashes like Job. It is the common place or mundane ailment that becomes the straw that breaks the camels back for me.

It is the latest migraine, the diverticulitis, the kidney stone, the coronavirus, or the sinus infection (all have happened in the last 6 months). It is that small little sickness that happens in addition to my "normal" health struggles that lays me bare before a mighty God. That "one more thing" that brings me to my knees in prayer, begging for mercy. That "one more thing" that makes all the busyness of the world stop, drowns out all the noise, and gets my eyes fixed squarely upon Christ, my only hope. It seems to always take that "one more thing" to get my attention directed back to God and away from myself, my worries, my planning for tomorrow.

It is that "one more thing" that reminds me that tomorrow has enough cares of it's own (Matthew 6:34).  Today, I get my daily bread, one portion of manna needed to get through this day, not tomorrow. I get grace enough to stand up under the tremendous burden, not in my own strength, but in God's strength.....one more day. For in my weakness, His strength shines through. (2 Corinthians 12:9-10) 

God gives each of us our daily portion every single day. We recite this in the Lord's prayer, which says "give us our daily bread" not tomorrow's bread or next week's bread, but enough for today. He is truly enough. 

If you have ever received an email from me, you may notice the verse from Job 13:15, which reads "though He slay me, yet will I trust Him." I hope you might read some of the story that I shared with you today. I pray that you too might find grace and strength in Christ today, and let tomorrow worry about itself. May God cause you to trust in Him, no matter your circumstances.

Until Next Time
~Shari

P.S. God restores double to Job at the end of the book, which you can read about in chapter 42!

We're Not Crazy

By now, unless you live in a cave, you have surely heard of the COVID-19 "novel coronavirus". The divide in America that I have mentioned before, is now focused on the virus instead of politics, but it still gets ugly very quickly! So, whenever I have a lot of thoughts gathering in my brain, I blog about them. I thought I would add my non-medical two cents worth to this whole ordeal (aren't you lucky).

1. "Panic Buying" - Stores are relatively empty of virtually all kinds of grocery items, and definitely out of hand sanitizer, face masks and toilet paper by now. My first point that we should consider, is that people are SCARED. This fear reveals the worst of humanity, the total depravity of man shows itself clearly as shoppers fight over toilet paper. Please pause and consider the shopper behind you who may not be able to get basic supplies they need for survival. If you weren't concerned about the virus at all, you may now be worried about the lack of food, and resulting ripples throughout the economy.

If you have seen people shopping with masks and gloves, it is not always because of fear. Slowing the spread of the virus is not just to protect yourself. There are individuals that are at greater risk for contracting the illness. Some must wear masks to protect themselves or their children, so please be kind. It is so easy to laugh and think they are being ridiculous, like this mother who experienced shaming as she shopped for her family.

This is an opportunity for the body of Christ to reach out with the only message that can calm a soul, the healing balm of the Gospel. As a Christian, I should be wise, educate myself about the virus, be considerate of others and try not to spread the virus. I should recognize this fear, be understanding, listen, and spread the love of Christ instead. Hopefully we can all give consideration to others, and share some of our excess supplies with those who may have very little.

Another thing to consider about the excessive hoarding is the fact there are people with compromised immune systems that need some of the items that were bought in large quantity in the early days. (Read this article for a personal perspective). This leads to my next point....


2. "Price Gouging" - The market generally allows manufacturers and store owners to recognize demand for certain items. They lower prices to help get things sold that aren't selling (think clearance racks). They raise prices to slow sales when items are flying off shelves, while they increase production. Times like this bring out the greed in our society. Some people in an effort to make a lot of money, bought supplies so they could turn around and sell them for a huge profit. (This guy is stuck with 17,700 bottles of hand sanitizer) Again, this is our opportunity to share with those in need.

Under this heading, while I mentioned greed, I thought I could add the fact that almost immediately scams popped up regarding the virus. Selling useless/fake products, including offers of cures and vaccines. Please check for the facts from a reliable source like the Centers for Disease Control (CDC)


3. "Down Playing the Seriousness" - If you aren't concerned about the virus at all, then I think you need to read more about it. It is new, which is why it is called "novel". A couple months ago, they knew nothing about the virus. As experts try to learn quickly, they offer the best practices from the data they have received. I have seen many posts about people overreacting for no reason, or the flu killing more people each year. This virus doesn't have a year's worth of data. As far as all the closures being an overreaction, I would say they are not. Italy is literally choosing which patients get to use the available medical equipment (like ventilators) and which ones die. The US response is meant to slow or stop the spread of the virus so that it does not overwhelm the medical system. The virus is deadly, and while you might be young and healthy with mild symptoms, you can still spread it to others for whom it may be life threatening. To these people, this is a very big deal!

As a side note, please know that even if the virus doesn't end up affecting millions of people does NOT mean it was no big deal! It does mean that all the actions taken (closing businesses/schools, social distancing, washing your hands, etc) DID work, and the disease was starved of hosts. We should be thankful for that and not smug that you were right.

You may have also seen ageism and ableism rear it's ugly head with subtle comments like "it only affects the elderly and sick" or the not so subtle use of the term "the boomer remover" to label the virus. Things like this story are sickening, but again clearly display the sinfulness of man. In the midst of all of this, I hope we can remember that each of us was created in the image of God. As image-bearers, my prayer would be that we might be able to trust Him for our needs; that His Word would bring comfort to our hearts; and His Spirit would prompt us to act in a loving manner towards one another.

Times like these make it clear that none of us are promised tomorrow. The Bible is clear that "today is the day of salvation." So, you should "choose today whom you will serve" and place your faith in Jesus Christ alone for salvation. Believe that Christ died for your sins and was risen to provide eternal life for all who believe. Repent of your sins. Whether you have toilet paper or not, you can trust that God is in control. Life won't be easy, and you might still feel fearful, but you can absolutely trust Jesus and God's Word, and rest in Him. (2 Corinthians 6:2; Joshua 24:14; Mark 1:15)


4. Final reminders - Please, brothers and sisters, check on your neighbors, and help where you can. One thing this whole situation has helped me to see is that I should try to keep a few extra pantry goods, so that when something like this happens we have plenty to share with our neighbors in need. What a beautiful testimony to the unsaved world to be a calm and shining light in times like this! Be safe everyone and together we will get through this.

Until Next Time~
Shari

Course Correction

I am not a sailor, although I did serve in the US Coast Guard Reserves. However, I do know that you need to be able to set a course and use a compass to stay on your heading. When you are on any kind of journey, it is important to know where you are going, and be able to follow directions to get there. Google tells me that being just 1 degree off course will cause you to miss your destination by 1 mile for every 60 miles you travel. Over the span of our lifetime, if we remain just 1 degree off course, the results could be disastrous!

Those of you who have followed my blog, know we have had a rough couple of years. (That may be a bit of an understatement!) My continuing health issues and physical needs have involved some large financial expenses. We recently experienced another unexpected financial setback. This week's experience has caused me to check my compass and realize that I had subtly and unintentionally drifted off course.

I dislike change, love to plan, like to be aware of what lies ahead, and feel more secure with a cushion in my savings account. Security is my love language! While none of these things is inherently wrong, it can be easy to get off course. I trust God, and know He provides all that we have. I know He has lovingly guided us through every difficult valley, and upheld us on every joyful mountain top. He alone gives, and He alone takes away.

So, when this unplanned financial issue came up a few days ago, it brought up a lot of thoughts and feelings. Fear, lack of security, frustration, and worry were quick to rear their ugly heads. I came to realize that my compass was no longer set to true north. My eyes were not fixed upon Christ, but were fixed upon my own plan to feel secure. My need to plan and control had failed me, and I sat wondering how easily I had drifted from my course (again).

Sitting atop my metaphorical boat, polishing it to a high gloss shine, I failed to make sure I was sailing a straight and sure course. I am thankful that God uses situations in our life to gently remind us to keep our eyes on the right thing: my Savior, Jesus Christ. It is not my planning, or savings account, or health that make me feel secure. Only in Christ is my future secure, and He alone is my only hope in life and death. I am very thankful for this little course correction this week, that I might avoid a more disastrous result down the road. I am in constant need of these reminders to keep my compass pointed north!

Have you checked your compass recently? Have you been drifting? Today is a great day to adjust your course, avoiding serious consequences, and place your faith in the One who can bring you safely to your destination.

Until Next Time~
Shari

...and After

Mayo Clinic and Minnesota are in our rear-view mirror once again. We had a wonderfully scenic and relaxing trip up north to Canada from Duluth along the North Shore Scenic Drive. We enjoyed a lot of time outdoors, even though we had to bundle up, and I got stuck a couple times!

Minnesota was a tad colder than Chicagoland last weekend. I am thankful for the extra days Chad was able to take so that all of his vacation time this year wasn't spent just sitting at Mayo Clinic. It is great to have a little time to unplug, unwind and reconnect to each other (not just the internet); however, I am looking forward to getting home shortly, because there is no place on earth more comfortable. (and I miss my puppy 😭)

I repeated three of the nerve tests over the last two days and returned to the neurologist. The test results are basically the same as our visit 7 months ago, with one being marginally worse. We have decided to take a year off now and see if I stay stable or get worse. I will repeat these same tests again next fall, and compare the two years (one with meds, one without).

If I start getting worse this year we can always restart the infusions. Also, doctors at Mayo have developed a new blood test to check for certain markers in the blood for people with an inflammatory neuropathy (like me). If I have what they are looking for, we might have a different treatment to consider.

Anyways, our visit is over for now. I really appreciate all of the much needed prayers. I have some amazing, faithful friends 💜

I hope I explain things well enough. We know I have a form of CIDP, which is progressive, and will likely get worse with time. It is a rare disease so there isn't a ton of info on it, but my doctor and his father are the leading experts.

So, keep praying, but also know that we are holding steady on the current course, and not expecting earth-shattering news or treatment options that will "cure" me. Please pray for pain control, wisdom, and even healing, if God so wills, but know that my trips to Mayo are not a search for a cure or diagnosis. We are trusting God's good, pleasing, and perfect will in each of these trials, and taking one day at a time.

Thanks for following along on my journey with me!

~Until Next Time
Shari

Who'd A Thunk it?

Tens years ago today, September 18th, 2009, on an early Friday morning, we were heading to Northwestern Hospital in Chicago for me to have surgery. On June 25th, an MRI showed what the radiologist believed was a nerve sheath tumor. I was told it would need to be removed. I knew the tumor was long, estimated at 5.5" along the femoral nerve, beginning near my spine, and traveling along the nerve towards my leg. They weren't sure if it was cancerous or benign. I was told there were only two options:

1. The tumor could be a schwannoma which would mean the tumor was on the surface of the nerve. This would mean they could possibly just peel the tumor off the nerve, and there would be no lasting damage, although it still was a possibility.
2. The tumor could be neurofibroma which would mean that it grew through the nerve, and thus not something that could be removed without removing a section of the nerve. This would possibly result in significant disability.

A team of 3 surgeons was assembled: 

• A neurosurgeon would inspect my spine and be present in case there was any evidence the tumor was growing on my spinal cord. 
• A general surgeon was there to make the incisions, move all my organs and bowel out of the way, so that the 3rd doc... 
• A plastic surgeon (they are also peripheral nerve surgeons) could access the nerve tumor and remove it. He made the decision to remove 7" of my femoral nerve to get the tumor out. He later said the tumor appeared so intertwined with the nerve he couldn't see the difference in tissue. 

Based on what he saw, he diagnosed this to be a neurofibroma. He also performed a nerve transfer, taking another nerve from a different section of my leg and transplanted it in the gap he had just created.

After the 8 hour surgery, the doctor came out to the waiting room to tell my family the news. 

I don't remember very much that day. Spending 8 hours on general anesthesia and then pain meds (LOTS of pain meds) tend to wipe your memory. I do remember waking up at some point late in the evening, and my mom blurting out that they removed the nerve and I may never walk again. I remember starting to cry as I heard Chad tell her that they had decided they were going to wait to tell me that. (She wasn't great at keeping a secret haha) I quickly dozed back off, and remember bits of time from the overnight hours. 

My daughter decided she would be the one to sleep in my room that night, because she is a helper and was worried about me. Mostly I remember waking up in the middle of the night, and realizing that my "dead" leg had slid off the mattress, and I couldn't move it to get it back on the bed. I spent about 20 minutes trying to wake my daughter up to help me, before pushing the nurse button. (Both of my kids, and my husband truly can sleep through ANYTHING!)

Ten years ago today, my life changed forever. Sometimes I can hardly remember when I could walk about freely. This date will probably always stick in my mind, since it was a major turning point in my life. It ranks up there with our first visit to Mayo last year when we found out that I never had a tumor, it was all part of my current diagnosis CIDP. 

If there is anything I have learned in all of this, it is that you never know what tomorrow holds. Even when you think you know, you think it have it figured out, you have adapted and accepted the reality of your situation, and then BAM! you get side swiped with different news that contradicts what you knew.

The one thing that hasn't changed in all of this is God. He is the same yesterday, today and forever (Hebrews 13:8). He was also not blind-sided by any of this, even if I was. He is sovereign, which means He controls all, knows all, sees all. If He is not in control of everything, He is not sovereign, by the word's very definition. He either controls everything, or He controls nothing.

God has not changed through the last ten years, but I have. I have learned more about myself: my struggles, selfishness, lack of compassion and patience, along with many other sins. I have learned that my stubbornness is both a blessing and a curse. (It just depends on who you ask! Chad would say it is a bad thing that gets me into trouble, but my doctor prefers to call me tenacious.)

I have learned about others as well. Learned to accept help, to let others show me love through service. I have found wonderful friends, who have faithfully prayed and served me without complaining, showing me God's love in a real, tangible way. 

God taught me to love more deeply, enjoy each day more fully, and is still working in me to develop trust and patience and other good things. He has definitely taught me that we all need to extend more grace to everyone around us. Most of us are trying to do our best, and sometimes we get it wrong. We should not be quick to assume wrong motives, but offer grace, grace and more grace.

This day, ten years ago, was a very rough day. I pray that I never go through a surgery that intensive or painful again. I am beyond grateful for all I have learned on my journey. I am excited to see what God has in store for the coming years, should He see fit to bless me with more, but for today I am content with where I am. I will try to stay present in today, because I know He isn't finished with me yet. There is still more learning and growing to do!

Until Next Time~

Shari

Don't Spill the Beans

My mother and I used to play the game "Don't Spill the Beans" when I was a kid. Each player took turns carefully adding a bean to the top of the pot, trying to keep it balanced so it would not tip over and spill the beans all over the table.

Original game photo. We just bought a bag of kidney beans to use.

This game seems like the perfect image for how the last few weeks have felt. In general, I am not an emotional person. I probably shed a few tears once per quarter, and have a good cry once a year or so. Most days my logical side tells me tears won't help, so don't waste energy crying, but then I go through a rough patch. Besides my regular chronic pain and neurological issues, which start my pot off with a handful of beans already, things tend to mount quickly.

Side effects from new high blood pressure medicine - add another bean.
Frustration and disappointment from a body that can't do what I used to do, or what I would really like to do - another bean.
Frequent headaches and migraines - bean.
Cancelled plans - bean.
Financial burden of disability, more pain than normal, weight gain, lack of quality sleep - bean, bean, bean, bean.

It isn't long before I feel my emotions begin to tip to one side, and despite my best efforts to level them out, things tip too far, and streams tears down my face, like the pot dumping all the beans all over the table. I am currently feeling like my pot is about to tip again.

If you are familiar with the game, as soon as the pot tips, emptying all the beans, it swings back and forth slightly a couple of times before it levels out and stops moving.  Just like a good, cleansing cry can swing our emotions, but afterwards there is a calm. All the stress and trials seems to have been washed away, and God graciously rights His vessel once more. He steadies us, having eased our burdens, comforts us and gently reminds us of the joy of our salvation. Christ, who bore the awful load of our sins, takes all our beans (our hardships) upon Himself, gives us a lighter load to carry. May we all be an empty vessel, willing to spill all of our beans into Jesus' loving arms, and look to Him alone for grace, strength and comfort in difficult periods of life.

One day there will be no more pain, or tears, but for now I pray that I will be an empty vessel, willing to be filled and used by God, for His glory. I am beyond grateful for the gift of eternal life, and the hope that I have found In Him. He provides exactly what I need, when I need it.

I thought I would finish with the words of the Heidelberg Catechism question #1:

          Q. What is your only comfort in life and death?

          A. That I am not my own, but belong with body and soul, 
               both in life and in death, to my faithful Savior Jesus Christ. 
               He has fully paid for all my sins with his precious blood,
               and has set me free from all the power of the devil. 
               He also preserves me in such a way that without the will 
               of my heavenly Father not a hair can fall from my head; 
               indeed, all things must work together for my salvation. 
               Therefore, by his Holy Spirit he also assures me of eternal life 
               and makes me heartily willing and ready from now on to live for him.

What "beans" are piling up on your pot? Look to Christ today, and give them all over to Him, before they spill all over the place!

Until Next Time~
Shari

Pinball Wizard

Pinball gets a bad rap. Whenever I hear a reference to it, it is often in regards to feeling like the ball, being knocked around, seemingly senselessly. What if we changed our focus? What if we instead think of the pinball wizard? We could recognize the amount of skill and coordination the game takes. We can admire the knowledge of physics and geometry needed to do well. We could see the gentle touch used. Appreciate the wisdom to know when to use force sparingly and with precise timing, without seeing the dreaded "tilt". There is a true rhythm to the game, where the ball is not a helpless victim, but a willing participant. A tool used in reaching the goal.

None of my analogies are perfect, but I do get these crazy ideas that help explain my life! I will admit, I have felt like that poor, metal ball being whacked about, just trying to get in the safety of that hole at the bottom of the game, not realizing that would be game over.

I have had so many migraines in the past few weeks, in addition to everything else, that it is hard not to feel like that ball. Then, one day this song got stuck in my head, and I started thinking. What if I stop focusing on the ball, and instead focus on the fact there is a pinball wizard moving the ball exactly how, when, and where he wants to?

A change in perspective can give us a change in attitude. While God is not a "pinball wizard" and I don't believe God is whacking us around a game board, I do know that every move my life takes is a planned move. God is gently nudging me, directing me, keeping me from that darkness of that hole that appears quiet and safe at the bottom of the pinball game. He keeps me from falling in the pit. God's loving care keeps me going, gives my hope, directs my path. I do not need to worry that our lives will go "tilt" as 2 Corinthians 4:8-9 promises:

"We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed."

Praying my migraines cease, but so very thankful for the loving, rubber bumpers that the Lord uses to steer me away from paths I should not take. He uses the gentle touch I need. I can trust I won't be crushed or destroyed, even if there are difficult times. 

Until Next Time~

Shari

Y'all Come Back Now, Ya Hear?

We just got home from Mayo. They repeated two tests yesterday that measure nerve function. Both tests showed stable results with marginal improvement in a couple of the numbers. As it turns out, I didn't get the clear results I was praying for, but that's okay. God did answer prayers for decent weather, safe travels, and I did not have too much pain. (I am worn out though!)

The doctor said we had many options including:

1. Stop the IVIg infusions, 
2. Take IVIg plus a 2nd medicine, 
3. Continue on as is, or 
4. Switch to something else entirely different. 

Hmmmm....well hey, at least I have choices! Basically, we feel like we are playing pin the tail on the donkey blindfolded! With any disease, it is often difficult to find the correct course of treatment for a patient. It is even more difficult with rare diseases. Many times you just have to make an educated guess, and see if something works.

We discussed all the options, but he doesn't have answers to all the questions I asked. He doesn't know for sure the medicine is doing anything. It might be that I just haven't gotten any worse in the past 6 months. He is "guardedly optimistic" that the medicine may be starting to make a difference. The first signs of this disease began back in 2005. It has been a very slowly progressing disease over 14 years. If the nerve inflammation and scarring is ever going to get any better, it will be a slow recovery process.

We decided to stay on the current course, but with IVIg infusions every 2 weeks, instead of weekly (mostly to give me a little break from the headaches and fatigue). Chad and I are good at making a decision and then sticking to it, so I will do 13 more infusions over the next 26 weeks.

In September, we will repeat all the tests again, and make a new plan.  If things continue to improve, we will adjust treatment as needed. It I am not better, we will stop all medications, wait a year....then, you guessed it, go back to Mayo for testing and a doctor appointment.

I did ask for prayer for clear results. I did get an answer to that prayer, and that answer was very clear, although the results weren't. I like things neat and tidy. I would love to just have all my symptoms packed into a nice little box, and be clearly labeled, but that does not seem to be God's plan. I like to get things done (fast preferably), check them off my list, and move on to the next thing. God, however, has me on the long, winding road, teaching me to sit back, slow down, and enjoy the scenery. I am learning not to take anything for granted. I am also learning to be present in the day. Today I can still get up, enjoy life, spend time doing things I love. I don't know what life will be like 6 or even 12 months from now (or if I will even be around to tell you), but I fully trust God, who is guiding my path. I wish He had me on the expressway, but the back country dirt roads aren't so bad either!

Thank you all for your prayers! I will keep everyone updated on our trips, and test, and everything else! To be continued.....

Until Next Time~
Shari

What is Truth?

My post yesterday mentioned believing what is true, and holding firmly to that in the storm. So with that in mind, combined with a movie I watched last week (the name of which I cannot remember....which actually goes along with the basis of the movie. I am notoriously bad at remembering names of actors, movie titles, and even plots), I decided to dig into the topic of "truth" today.

The movie I am referring to had a murder mystery plot, but the purpose of the film was to point out that our memories, as well as the things we see or hear (or think we saw or heard) can never be proven or trusted. Our memories, feelings and thoughts betray us. The main character actually started to believe he had committed the murder, and was having flashbacks of doing it. Turns out the death was just an accident and the movie ends without more explanation. The movie concluded that because we can never be sure that we know or remember things accurately, then there is no real truth.

Now this idea isn't new. I mean it is "new" in the last hundred years, but not new in today's culture. We hear terms like "your truth" or "my truth" suggesting that each person decides what is true, but that contradicts the very definition of truth. Instead, that redefines the word. The 1828 Webster's Dictionary uses words like "fact" "reality" and "correctness" to define the word truth. It goes on to quote Scripture verses about God's Word being truth. The latest Merriam-Webster Dictionary includes terms like "an idea accepted as true" or "sincerity" which is vastly different than fact. We can be sincere in our beliefs, or accept an idea and true, and still be wrong. Sincerely wrong. Believing something doesn't make it true.

Perhaps part of the problem is our own insecurity. Can you imagine thinking that everyone else somehow has the answers, and you don't? Have you ever felt like you walked into a room where everyone else knows the agenda, and you somehow missed the memo? I know I have! We like the sound of having "our truth" and "your truth" to some degree because we can feel better about ourselves. No one can question what we believe if truth is individual. We never have to feel stupid or uneducated.

Pride plays a role here too. We feel comfortable in letting people live their lives the way they want (even if we aren't comfortable with it). Who are we to judge? If each person sets their own truth, then we are always right, even if we all disagree, and who doesn't love to be right? We also never have to take someone else's opinion of our life choices to heart. No guilt or worry, because we can both be right.

All of this also plays in to our need to feel loved and accepted. We don't want to be seen as a prude or a bigot. We want others to like us, and don't want to confront their beliefs. We can easily start to believe truth is relative, because it is hard to stand against the rushing tide. To be the lone voice holding fast in a swift current is difficult at best. As a nation many years ago it was the minority of voices pushing the boundaries. As those voices grew louder, we turned away, not dealing with the hardship. We slow give in to the changing tide, instead of dissenting. That is not to say that no one held firmly to truth and stood up to society's changes, but the majority started to buy into it. Somehow during this rise of postmodern thought, we agreed to accept that truth is relative, which lets us off the hook of answering the tough questions about right and wrong, truth and falsity.

None of us can trust our feelings, thoughts or memories, which is exactly why we need that compass of truth to keep our ships heading due north, or we will stray off course. I won't get political here, but I think we can see the country has shifted sharply in the last 100 years. Things once thought to be vulgar or taboo, are streaming constantly on TVs and social media feeds. The meanings of words have changed and morphed. Truth is harder to discern. We are a nation sharply divided. One whose compass has broken, and we have indeed drifted far off course. Although we are okay with the idea of no "absolute truth", I think that the constant stream of heated, divisive conversations on social media prove otherwise. We really like the idea of not being wrong, and we really want what we believe to be the real truth. I think this is the root of all the hate speech I read when two sides of any issue try to talk. They think yelling their beliefs louder will result in it being true. We are fine when "your truth" doesn't impact our lives, at which point we want "our truth" to be the rule.

One thing I do agree with from the movie is that our feelings and thoughts can't be trusted. The truth is that our hearts do deceive us (Jeremiah 17:9). How do I know that this is true? God's Word says so.  My believing God's Word doesn't make it true. His Word is not true because I believe it is, it is true because God IS truth. The definition of truth comes from God. He is the Way, the Truth, and the Life (John 14:6). His Word is given to us as our compass. It leads us to true magnetic north and keeps us on course.

Likewise, if you don't believe God's Word is true, it doesn't negate the fact that it is indeed true. The question really becomes "if you believed something that wasn't true, would you want to know?" Seriously, are you happy to remain on your current course, with a compass that doesn't actually point north, but merely confirms north is the direction "your truth" tells you it is? Many times the truth is hard to hear, even harder to believe, especially when it challenges our choices and worldview, but choosing to just ignore it is a recipe for disaster. My prayer for all of us is to be teachable, truly wanting to know any area of our lives where we believe wrongly about something. Check your compass today, and make absolutely sure that it is pointing you true north, to the One who is The Truth.

Until Next Time~
Shari

Dark Circles

Have you ever had that feeling like you are about to pass out? Dark circles envelop your vision, blackness closing in. This seems like a decent analogy of my life currently. Darkness seems overwhelming at times, closing in from every side. I feel like I might "pass out" as I lose the light in my vision. The last several years have been difficult (that might be putting it mildly), but this past year has definitely hit an all time low. My health has continued to decline and the accompanying chronic pain has been overwhelming. Medical treatments and side effects are exhausting. I have spent a LOT of time sitting with a heating pad or ice pack, and zoning out in front of a screen. I haven't done much art, or cleaning, or even leaving the house. I have missed a lot of Sunday morning worship services. Due to my accessibility needs, we switched churches in December of 2017, which combined with my recent spotty attendance record, has made it difficult for me to feel connected. I have lost friends, been unable to do things I love, and gained weight. Any one of these things would be enough to deal with, but all together, I feel alone and surround with darkness.

Disability and suffering are often isolating. When I do go out, I put on a smile, and try not to turn every conversation into a gripe fest of how bad I feel. So instead, I try to love others and ask about their lives. Listening is one of the first things I have learned this past year. As I have spent more and more time alone, stuck in the house, and wishing for someone to talk to, I have learned how valuable a listening ear is! In today's electronic world, it is a rarity to find someone that stops, makes eye contact, and actually pays attention. I am SO very thankful for those friends I have that are willing to do this, and hope I can do the same for others.

I have also learned some things (of the not so pleasant variety) about myself. I have put too much worth on friendships, letting hurt creep in when those relationships fell apart. I am reminded of my own words about managing my expectations of others. In truth, I should be seeking Christ. Wanting a deeper fellowship with Him. Going to Him in prayer, and with my concerns, worries, and pain. Not that friends aren't deeply valued! A good friend is a rare jewel. They can rebuke and encourage us. They help carry our burdens. But we must also remember they are sinful humans, just like us. Christ alone is the "friend that sticks closer than a brother" (Proverbs 18:24), and to Him alone should we look to truly fulfill that need for acceptance and love.

Besides feeling super crummy, gaining back a lot of the weight I lost back in 2013-2014 has added to my frustration and encroaching depression. This issue has also got me thinking about my beliefs on weight, self image, and food. Yes, I do feel worse when my clothes don't fit. My blood pressure is high again, so there is a real health concern, but if we get down to the brass tacks, I want to be thin to "look good." Our culture pushes this agenda, and I have bought in hook, line, and sinker!

I have been going through the book Idols of the Heart by Elyse Fitzpatrick again, and there are plenty of idols coming out of my little "idol making factory" as John Calvin describes our hearts. One more lesson to be learned in all of this darkness.

We want what we want. What we shouldn't have for reasons perhaps unknown to us. We desire that which we think will make us happy: friends, thin bodies, perfect health, no pain, etc. The list goes on and on seemingly forever. It is very difficult, if not impossible, to bear up under the weight of all these things. The dark circle surround us, and just like my analogy about the feeling of passing out, just about the time we think our entire vision is going to go black, and we will most definitely pass out, a tiny light in the center of our vision starts to shines through. Slowly, the center light grows, and chases back the black circle that had threatened to overtake us.

In those moments, I am reminded of 1 Corinthians 4:8-9

"We are afflicted in every way, but not crushed; 

perplexed, but not driven to despair; 

persecuted, but not forsaken; 

struck down, but not destroyed"

This is where my hope is found, in Christ, the Light of the World. Just when I think I can't take any more, as I lie alone begging for mercy, wondering if the pain will ever end, asking Him if He is listening, if He even cares, that small dot of light emerges in the distance. As I begin to focus on it, it grows larger and brighter. That is not because God finally showed up, or decided to intervene, but simply because I wasn't focused on the light. I began to focus on the overwhelming blackness. I started to believe He doesn't care, or isn't listening. I begin to believe it will never end. I start to focus on my symptoms and circumstances, and lose sight of my Savior, and His truth. But then, I hear God's still small voice prompting me to remember what is true. God tells us many places in His Word that He will not leave us or forsake us. That is the truth. God never left me, his Light was there all along, I just chose to focus on the darkness. I missed His tender mercy in a card from a faithful friend, because I was thinking instead of the friends I lost. I failed to see the simple joy God brought to my days by way of a little 12-lb dog, and looked only to my feelings of loneliness.

I am not trying to minimize the struggle. I am suffering. I am miserable. This is all very hard. I know you hurt too. I am simply trying to remind you (and myself) to stop focusing on the black circles closing in around us, and focus on the light instead. Keep your eyes fixed upon Christ! (Hebrews 12:2). Be grateful for the faithful friend, or that tiny rescue dog! That is how we give thanks to God in all circumstances, like Paul tells us in 1 Thessalonians 5:18. We start to change our focus to God's blessings, and stop making the pain and disappointment the center of our world. We aren't thankful for the pain and suffering, but we can be thankful to God, even on the worst of days, for His loving care. 

I am thankful that God has been gently revealing the sin in my heart, and for His forgiveness. I am thankful that I am learning to trust Him more, even on those days when I cry out like the child's father did in Mark 9, "Lord I believe, help my unbelief!" Remember to give thanks for His Son, the Savior of our souls, who also knew the pain of suffering and isolation. The One who suffered all of that in our place. 

We used to joke that the light at the end of the tunnel was a train, and some days it still feels like that! I pray we can all look down that tunnel of blackness, and see a small light in the distance, and then draw near to that Light! Keep searching and clinging to the One who preserves our souls, and I know the darkness will fade, even if the suffering continues. That is the truth for all who are in Christ Jesus! Will you choose to cling to the Light, or continue in the darkness?

Until Next Time~

Shari

Staring At The Glass

Some have called me a pessimist. I, however, prefer to think of myself as a realist. I will admit that if I am asked the age old question, "Is the glass half full or half empty?", my answer would always be the same. Looking at a 16 oz glass with 8 oz of liquid in it, I would say the glass is half empty. Others of you might say that the glass is half full. Realistically, whatever you call it, it is still 8 ounces of liquid in a 16 ounce cup.

Some days we might see that glass and wonder where the missing 8 ounces went. We might reflect back to a time we drank it down. Did we spill it? Waste it? Or was it a refreshing thirst quencher?

We might look at that half empty glass, and realize we started with only 8 ounces even though our travel mug has always held 16 ounces. We might begin to think it seems unfair. Why do others get a full glass, when we only get a measly 8 oz.?

There will also be days that we don't care about how much water we have at all, but are concerned more about the container. One person may have a crystal goblet, and another may have an old travel mug with a broken handle.

On days when we are feeling optimistic, we are aware of that cold 8 fluid ounces of water sitting in our cup, and we feel bad we have so much when others don't have any.

Today, on this Christmas Eve, I sit here looking at my cup, and I am simply grateful. The 8 ounces that I do have are a gift from God, the same way 16 ounces would be, or even an empty glass. It doesn't matter if my glass is big or little, glass or tin. The most important thing is to remember who gave us the gift.

Christmas is the best time to reflect upon God's perfect gift to us-- His son, Jesus Christ. Jesus says, "If anyone thirsts, let him come to me and drink" in John 7:37. I am praying we will all remember that Jesus truly is the reason for the season. I also pray that we are able to be thankful as we gather tonight and tomorrow, perhaps with family or friends, or even as we sit alone. Whether we have 16, 8 or 0 ounces in the glass in front of us, we can and should be thankful for whatever God has provided each of us, being careful not to compare it to what other people have. So this Christmas, lets give thanks to the Lord, for our cup truly does runneth over. Merry Christmas!

Until Next Time~
Shari

ODAAT

I like schedules. Actually, my life is full of lists and schedules. I even make a weekly dinner menu. Order and structure characterize my days, so much so, that some days you will find me doubled over in pain cooking dinner. If the menu says spaghetti on Tuesday, we are eating spaghetti on Tuesday if there is any humanly possible way for me to get it done. Sometimes, Chad comes home from work and just shakes his head in disbelief. "You know that no one else does this, right?" he asks.

Since I like things planned out (no surprises for this girl!) I begin each day looking over the week's activity list. When I was younger and healthier, I always got everything done. Now, I try to save energy for the days that have the most important tasks. The trouble is, ALL the tasks on my list are *important* to me. According to the Meyers-Briggs personality test my kids had me take a few years ago, I am "the duty-fulfiller" type. Basically, this means that I have a list of things that I need to get done each day. I push through to get every last item done, always have, and always......well, actually not anymore. Some days, no matter how hard I push, there are still items left on my to-do list at the end of the day, which tends to leave me feeling like I failed. (Yep, I got issues)

I have always planned my days and weeks far in advance, even down to life's least important tasks. I am a creature of habit. I do laundry on Mondays, clean each level of the house on their specified days, and grocery shop on Thursday mornings. Every chore, and even things like reading or art, are in my calendar in their official time slot. Chad also shakes his head when my phone buzzes every few minutes reminding me to do basically everything. What a glorious time we live in to have smart phones with reminder alarms! I used to write everything on a wall calendar, and use notepads for endless lists.

I have written before about managing expectations. Honestly, I am WAY better at letting others off the hook, giving them grace, and lowering my expectations of them, than I am of myself. I am my own worst enemy. I know that my list doesn't really matter. Although I like structure, I do know that if my laundry doesn't get done until Friday, the world won't fall apart. Honestly, I won't even run out of clean clothes that soon! If my life seems ridiculously organized, all I can say is that I am a LOT more laid back than I was twenty years ago. (Hard to believe, right?) Age, children, marriage, poor health, and most importantly, my faith in Christ have all impacted me in a positive way, and helped me to let go of some things. I have learned to cut myself a little slack. I am still a work in progress.

Lately, each day seems to start differently, unpredictably. I never know how I will feel. New challenges present themselves, and as Chad likes to say, we adapt, improvise, and overcome. I have been made more and more aware of my tendency to want to perfectly perform my (never ending) lists. I am a taskmaster. I place unnecessary burdens upon myself, especially now. There is nothing quite like completing a task, and being able to cross it off my list! I am learning that most of what is on my list is unimportant. I need to prioritize, but I also need to learn to let go. Everything is not of equal importance. It really is okay if the furniture is dusty.

I am trying to take each day as it comes. I can't change how I feel when I wake up every morning, but I can choose how I view each day. I am working to figure out why I am how I am, growth is an important part of life (although I am not a huge fan of change). For now, I am learning to take One Day At A Time (ODAAT). By the grace of God, I am learning to forgive myself, and give myself permission to "fail" at finishing my list. The Lord has been teaching me so much through all these trials, and most recently, He has been gently revealing the heart issues behind my compulsive behavior. My need to do everything on my list is a form of works righteousness. It shows my sinful tendency to want to do something to earn favor, or feel accomplished. It speaks to my trying to control things, which reveals a lack of faith and trust. All my striving to complete a list is simply futility. The good news is that Christ's work was complete. I do not have to contribute anything to my salvation, nor could I add anything to it. Jesus said, "It is finished." I don't need to run myself ragged over a ridiculously long and detailed list of chores. I need only to enter into His rest. I am grateful for God's loving correction, and His grace to live ODAAT.

Until Next Time~
Shari

Bruised

When people ask how they can pray for me, I frequently tell them to pray that I might suffer well. While I would love for God to heal me, to end my pain and suffering, and to make me well, it is not the thing I ask for most often.  No one but God knows how long this season of suffering will last, but I do know that I am called to endure, to continue to praise God, and to bring glory to His name. I want to be a faithful witness. In my weakness and my darkest moments, I cry out to God for strength, grace, and healing, but always end my prayer saying "not my will, but Yours be done."

I was given a book to read recently, "Holding on to Hope: A Pathway through Suffering to the Heart of God" by Nancy Guthrie. If you have gone through a period of suffering, grief, or loss, get this book! She brought up a great point in the book, and it has really stuck with me. She mentioned that we seem to tack on the little phrase "Your will be done" at the end of our prayers, but really should start our prayers in this manner. Imagine if we could really give all our wants and desires over to the Lord and pray "Your will be done", fully trusting He will work all things for our good. Honestly, just go read the book, as I am not doing it any justice here! It is hands-down the best book on suffering I have read, and I have read a LOT of them.

Before I sign off, I figured it is time for some updates. First, I began my weekly IVIg infusions on Friday, October 26th, and will have my 3rd one this Friday. Side effects thus far are fatigue and a mild headache, although last Sunday I had a full blown migraine. Additionally, my veins aren't cooperating, so the doctors are currently deciding if I should have a port put in to enable easy access for the IV. It took 3 attempts last week to get the IV started, and my arms are very bruised, but I know that God does not break a bruised reed.

Hopefully, my body will adjust, and treatment can continue. I am really suffering, and this is the last line of treatment. With my legs, the main symptoms were numbness, weakness, cramping, loss of reflexes and balance issues, but overall not painful. Now that we realize my upper body issues are related to the CIDP also, it has helped me to understand some of my symptoms. While I do have numbness, weakness, and muscle cramping in my arms, I also have constant burning nerve pain in my neck and hands. The most painful aspect has been the random electric shocks that shoot down my arms unexpectedly. I remain cautiously optimistic that this treatment will provide some relief, choosing each day to not linger in the self pity and depression that constantly stalk me. Pray for me to continue to cling to my Savior, and to suffer faithfully. I know He will give me the grace needed to live each day for His glory.

The last thing to tell you about is a letter I recently wrote to the doctor (whom shall be known as "Dr. D") who performed my original surgery. I wrote three pages explaining everything that has transpired since 2009 when he removed the "tumor." I wasn't sure "Dr. D" would even read the letter, remember me, or respond. He was only my doctor for about a year, before we moved on to second and third opinions. Since he is at a teaching hospital, the letter was meant to inform and be used as a learning experience. I was pleasantly surprised to receive a two page hand-written response from "Dr. D" a couple weeks later. His response was sincere and humble. He admitted he should have done better at  following up with me. It was a cathartic thing to do, and helps me to close that chapter and move on. And so, I am moving on...

Until Next Time~
Shari

Lost In Space

I thought I would try to write a short post, since I have been very wordy recently! I mentioned the sensory and motor nerve issues that were discovered on my tests in yesterday's post. I have been thinking about the doctor explaining this all to us.

Tests showed some motor nerve involvement. This would cause weakness, and muscle atrophy, which is why I fatigue quickly, and can't walk as far as I used to. There is also some demyelination. Myelin is the protective covering over your nerves. It is like the outside plastic sheath on electrical wires. When nerves show signs of demyelination it means that the protective coating is being destroyed by the disease process. Just like a short in an electrical wire, without the coating on the nerves, the signals slow or stop and cannot pass correctly along the nerve, getting lost along the way.

My tests also show sensory nerve damage. In fact, my testing shows that this part is the worst part of my particular case. The doctor said it was one of the worst sensory exams he has done. Sensory nerves help you feel hot or cold. They allow you to feel rough and smooth surfaces. They enable you to walk, and feel the ground under your feet. My legs are numb from my toes to my hips. So much so that I have burned myself in the shower without realizing it. One of the biggest problems with not having much feeling in your limbs, is the difficulty your brain has trying to communicate properly with them. I cannot always tell where my feet are in space. Proprioception is the brain's ability to have a sense of the position of all our body parts as we move. It usually lets us know how hard we are pushing down, or weight bearing.

Because of all of this, I am a bit "lost in space." I start to take a step forward, and instead I lose my balance and end up side-stepping to try to stop from falling (danger Will Robinson!). I end up going in a direction that I did not intend to go, and THAT sums up our life right now. It probably seems like a lot of your lives too. We think we are headed in one direction (at work or home, perhaps medically or relationally), when we realize we have had to do a couple quick side steps to stop from falling. I went to Mayo thinking that we would get answers about our future (learn more about my prognosis), and came home questioning our past.

Proverbs 16:9 reminds us that "The heart of man plans his way, but the Lord establishes his steps." We may feel like we are stumbling around. It may seem like we are falling and side-stepping instead of heading in the direction we should be going, but God has ordained our steps. We may not feel like we are on a straight path. Our idea of straight may be different from the Lord's. God's ways are higher than ours. His purposes mightier. We are to trust in the Lord with all our heart, and not lean on our understanding, but in all our ways acknowledge Him. If we do, He promises us to make our paths straight. (Proverbs 3:5-6)

I have said many, many times that this is not a path I would have ever chosen. I don't think anyone in their right mind would sign up for this, but I believe with all my heart, that I am walking this road for God's glory and my good. I am thankful for His loving discipline, and the Spirit's leading and guiding. I am grateful that He has begun teaching me patience, love and compassion. I am praying that God would graciously open your eyes to His truth, open your heart to His Son, and give you faith to trust that He is making our crooked paths straight.

Until Next Time~
Shari

Hard to Put Into Words

Chad and I are relaxing near Minneapolis for the weekend before returning to Mayo on Monday for more appointments and tests. Since I last posted, we met with a rheumatologist (who was wonderful). She ordered some more labs and another MRI. She thinks the latest diagnosis for all my spine and neck pain, may be accurate as an inflammatory arthritis, but it could also be an early onset (possibly genetic) form of osteoarthritis/degenerative disc disease. If it is indeed an inflammatory arthritis, they will get me in to a specialist who only treats patients with that diagnosis. If it turns out to be the other degenerative disc disease, which is not an autoimmune disease, then pain management is my only treatment to try and maintain a good quality of life.

We arrived to the "waitlist checker" line at 6:30 am on Friday to try and get the EMG done sooner (this was needed before we could try to get the other specialist appointment date sooner). We were 4th in line. The first "checker" as they are called, arrived at 5:30 am!! The first checker was called back for testing at 8 am, and providentially, another one had to leave. That left just one other person ahead of me, so I was feeling hopeful. The next checker was called around 10 am, and I knew that I was next. I prayed for another opening before the end of the day. Just before 10:30 am, my name was called, and I was headed back for the test. It didn't go quite as expected, keep reading for all the details. Sorry, but this post will be a long one.

While we waited, a couple from western Minnesota sat next to us. We struck up a conversation with them, and thoroughly enjoyed talking to them. We had a lot in common. He worked in the construction industry like Chad does. She has been a special education teaching assistant, for the past 18 years, which is similar to the work our daughter, Katherine, does. During our talk, we both mentioned attending church on Sunday, so I asked where they went to church. We had a great conversation about faith, and the importance of preaching God's Word truthfully and un-apologetically. We also discussed the medical issues that brought us to Mayo. They were going through some similar testing, but sadly it seems the husband may have a rare and deadly form of cancer that affects the nervous system. She explained this to us through tears as he was in doing his test. We were able to pray with her in the waiting room. I love that Christ binds believers together as a family, no matter where we live, or what church we go to, and am thankful we met and could provide comfort to each other for a brief time while waiting.

It has been very interesting to see the melting pot of people from around the world in the waiting areas, but it doesn't end there. I have met doctors from New Zealand, India and Portugal that are visiting Mayo for specialized training, as they shadow some of the experts in their fields of practice. The entire downtown Rochester area (that is Rochester in Minnesota, not in New York haha) is connected with subway tunnels, and bridges, and there are wheelchair ramps and elevators everywhere!  Even the smallest of restaurants has elevators to get you to the seating areas, or bathroom. That part has been wonderful! I can't think of any other place I have been that is like this place. It really is a fully accessible, "mini city" around Mayo Clinic, where you know almost everyone you see is here for medical treatment. The Mayo Clinic blue wheelchairs are being pushed all around the area, and I have seen some very sick people. We are all here for one thing: answers. We all have the same hope to get a diagnosis and a treatment plan to make us better. That provides a connection, that makes everyone a little nicer to each other in elevators and waiting rooms. The staff is also very friendly and compassionate. In Chicago, I frequently have a receptionist with an attitude, or who seems to hate their job or is having a bad day. I haven't had that experience here yet.

OK, so on with my testing story. I am laying on a table, waiting for the doctor to come in to start the EMG. A tall, 50-something, doctor walks in and says hello. He introduces his "shadow" who is the doctor from Portugal (mentioned above). He sits down and starts to type, but then stands up and leaves the room. I sit up to see if I can read what he was typing and I see that he entered his name under the physician heading "Dyck." When he comes back in, he explains he was shocked to see me today. He says he received a phone call the night before from the radiologist who told him that he needs to see my MRI scans. Dr. Dyck continues by saying he is very familiar with my name and case, because he spent the night reviewing my records. He had no clue that I would be a checker, and end up in his testing room the next morning. Oh wait, it gets better!

In 2013, when we had considered Mayo Clinic previously, I had been reading medical journal articles, and saw that a few of the ones that seemed to be most relevant in my case were all written by a Dr. James Dyck from Mayo. I did a lot of sleuthing, and found an email address from him from the medical school here where he does lectures, and I emailed him. So, as it turns out, I was as surprised as him that we ended up in that room together yesterday! Back in 2013, he asked the clinic to offer me an appointment, which they did, but it was like 8 or 9 months out, and we were worried about not starting treatment soon enough. We ended up deciding to not take the appointment, and go with the second opinion doctor at Northwestern, who comes to Chicago one day a month from Mayo. Leading us down the past 5 years pathway of trial and error treatment plans that lead me here to this room on this day. Again, I say providentially, as there are no such things as luck and coincidence.

I asked if he was Dr. James Dyck, and mentioned to him that I had written to him, and of course he gets thousands of requests, so he doesn't remember me, but I did learn that his father (same name) is the oldest doctor on staff at Mayo, now in his 90's! Dr. Dyck Sr. is the doctor that first identified, and named the disease CIDP, which has been mentioned before in my case. Dr Dyck Jr. performed the test, and because he was very interested in my case, and with the results he was getting, I had an almost 2 hour long test! He sent the nurse and staff to lunch, and stayed there with me, literally testing every muscle in my body, including my face (that was strange)! He refers to his father as Dr Dyck "The Greater" and himself as "The Lessor" :)

Since this post is already long, and there is a LOT of medical terminology to wade through, I will try to keep this short (hahahaha) and simple. (Friends- if you want a more detailed explanation, feel free to call over the weekend).

Dr Dyck had plenty of bad news.

1. My EMG and MRI were clearly abnormal.

2. He said that the nerve tumor they removed in 2009 should not have been removed, since it was benign and removing it would make me more disabled than leaving it. I have heard this from 2 other doctors.

3. He suspects based on the current testing that I do indeed have CIDP (he is still waiting for other testing, and perhaps a biopsy to definitively diagnosis this, but he seems fairly confident.)

4. Based on everything he has seen in my case, and the fact that he has seen 6 other patients who were wrongly diagnosed with a neurofibroma, but instead truly had CIDP, he suspects that I never had a tumor. He thinks it was CIDP all along. He has requested the pathology slides from that 2009 tumor resection to see them for himself, but again, he thinks he will find that the pathology and diagnosis were wrong.

5. Recent nerve issues in my arm are also likely the beginnings of CIDP in my upper extremities.

There were more tears. Right now, I am not certain of anything, but the implications are staggering. If he is correct, I had a surgeon cut out 7 inches of a large nerve to my left leg to remove inflammation, and not a tumor, leaving me forever disabled (2009). That alone is bad enough, but sadly it doesn't end here. I had a second surgery to try to reconnect the nerves that were cut out in 2010. The first surgery caused my gait issues which have led to a knee replacement (2011), a tarsal tunnel nerve release in my ankle (2012), increased back and neck pain because of the spinal arthritis, as walking has been so much more difficult since 2009. I then developed a neuroma along the original incision, and had to have another surgery to fix that (2013). (For the sake of shortness, I will just say that we had already known the original surgeon did not do things he should of done to aid in my recovery, which very well might have enabled the nerve transfer to keep the muscle functioning, leaving my leg a bit weaker, but not paralyzed).

CIDP is also not the best thing to be diagnosed with, but in some ways the fact that he feels many of the nerve issues I have can be explained by one diagnosis, and not many different diagnoses that are not related (which is what we keep hearing) sounds good to me. What doesn't sound good is thinking through that last paragraph. It is almost too much to think about. It has been a struggle the last 24 hours to stop my mind from pondering the "what ifs" even though I know that is not helpful. There is some sadness, and some anger we are dealing with, but Chad and I are both trying to not let ourselves go there. We can't get trapped in the past. My recent posts have discussed closely monitoring our expectations, and not worrying about tomorrow. Today is the day we need to be present in, and today I am reminding myself to also not live in the past. Imagining what might of been won't change anything but my attitude. It will only create anger and regret and bitterness.

I still have many more appointments, and will likely have to stay longer and/or come back in a few weeks, especially if they do the nerve biopsy. In the meantime, I will try to not look backwards, and not worry about what the ultimate outcome will be. I will try to focus on one day at a time. Praying you all can do the same.

Prayer requests-
1. Monday morning we plan to be in the checker line early again, to try to see the peripheral nerve surgeon instead of waiting until August 23rd. Please pray we are able to get in sooner, even if that means staying an extra day or two now.

2. Tuesday, if you pray for anything, please pray for me on Tuesday! I have a spinal tap scheduled at 7:45 am and a sensory test at 3 pm. I cannot have any pain meds, no muscle relaxers, or CBD oil, nothing, not even Tylenol for 12 hours before the sensory test. I have not gone more than 4 or 5 hours with meds in months because of pain, and it has been worse with the hotel bed, doing tests and sitting in the waiting room. After the spinal tap, I have to lie flat for 2 hours on the exam table to allow the hole to close, which I assume will be uncomfortable by itself.

You are all caught up, and I will continue to update everyone who is interested as we know more. At this point, I am guessing we won't know much else for a couple days. I am thankful for each of you who continue to pray, it means the world to me 💜

Until Next Time~
Shari

If you would like to know more about what CIDP is, you can read more here.