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

*DING*

I recently read the book 12 Ways Your Phone is Changing You by Tony Reinke. Tony examines the ways our smart phones are changing how we behave, communicate and participate with those around us. This book is extremely convicting and eye-opening. He does not take the position that our phones are bad, or using them is evil, but in fact quite the opposite is true. He clearly flushes out the usefulness of our pocket computers. These high tech devices help us to spread the Gospel, be more productive, educate, and much more. Unfortunately, our constant connectedness can distract and distance us from those whom we are closest too. Essentially, the more connected we become the lonelier we feel. Where we used to go to the movies with friends, we now stream movies to our living room.

The book's chapters dig deeper into to each of the 12 ways Tony Reinke sees our phones impacting us individually and as a society. The titles of the chapters give a sneak peek as to what you will find inside:

1. We Are Addicted to Distraction
2. We Ignore Our Flesh and Blood
3. We Crave Immediate Approval
4. We Lose Our Literacy
5. We Feed on the Produced
6. We Become Like What We "Like"
7. We Get Lonely
8. We Get Comfortable in Secret Vices
9. We Lose Meaning
10. We Fear Missing Out
11. We Become Harsh to One Another
12. We Lose Our Place in Time

The book is well researched, and well written. It does not condemn technology, or our use of it. It does, however, point out real and present dangers that we should all be aware of. The book points out our Pavlovian dog response to the buzzes and beeps emanating from our devices. Our phones (and as a result we) are "on" 24/7. We are afraid we will miss something. We enjoy getting "likes". This can all be used in a way that can bring glory to God, but frequently it is used to distract us from our boring lives. It might be an escape for us. Our phones and computers provide an atmosphere in which we can portray our lives as something other than what they truly are. We feel jealousy and discontentment as we think we are truly peering into the lives of our neighbors and friends, but in reality seeing only small glimpses into reality.

Technology is a good thing. It is a gift from God, from whom all knowledge originates. Computers and internet have enabled me and others to blog, to share our stories, and the Gospel with people a world away. We have been given an opportunity to use a new, and advanced medium to reach others we would likely never meet face to face, and because of that, it comes with a great responsibility. We will give account for every idle word we have spoken (or written) one day. The distance the internet creates makes us feel safer to be harsher with people. We say things that we would never say if we were standing in front of a group of people. We watch things that we would never consider watching if it weren't from behind the anonymity and privacy of our own screen. This book gives us reason to pause, consider and evaluate our phone usage.

The book is well worth reading, and although it is written by a Christian author, and has a Christian bent, it's research is solid, and the message behind why we respond the way we do is important to reflect upon. You won't be disappointed, and quite possibly you will have your eyes opened wider, like I did.

Wish you all a Happy Thanksgiving!
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

Good Grief

Grief is a part of life. We grieve the loss of a loved one. We can also grieve the loss of what might have been. The loss of hopes and dreams. We all go through times of grief for things like this. Maybe an injury kept you off the baseball team that you thought would be your future. Maybe it is finding out your child will have special needs, and their future goals may be learning to walk or talk, instead of being the CEO of a fortune 500 as you had hoped. We grieve the dissolution of a marriage, or a child who wanders away from the faith. There are likely hundreds (thousands even) of scenarios that cause us to suffer a loss of some kind, and result in us grieving.

Grief can be necessary and even good. Grief is a natural human emotion, and a process that is as natural as living and dying. Grief can also be bad. It can be a state we enter into and never leave. We can linger too long and let sadness, anger, denial, and bitterness rule our hearts. There is a sinfulness in dwelling in grief too long, however, dealing with grief can be helpful as we come to acceptance, embrace the truth, and move passed it. This is not to say that there is not still a hurt, or a void left behind by the loss, because there frequently will be, especially if our loss is that of a cherished significant other.

Reflecting on all my recent news, I realized all the grieving that I have done, and am still doing. When I first had surgery in September 2009, doctors had hoped that they could remove the tumor from the nerve, and I would not have any ill effects. My surgery that day lasted 8 hours. Just moments after waking up enough to realize where I was, or even who I was, my mother blurted out that the doctors had to remove 7 inches of my femoral nerve. They took a portion of nerve from my inner thigh and tried to reroute it to make my thigh continue to work, but doctors weren't hopeful, and it could take up to 12 months to let the nerve heal and see where we end up. I remember bursting into tears as I heard what I considered to be worst case scenario. I also remember Chad (my husband) saying to my mother that they were going to wait a little while to tell me. My mother was never good at keeping secrets :)

After that surgery, it took me weeks to just sit up in bed for more than a minute or two. I had 3 incisions, each 8-12 inches in length. I had been completely disemboweled during surgery to get to the spine and nerve so they could find the tumor and remove it. It was by far the roughest, most painful thing I have ever been though. Those weeks were very sad, and very difficult. There was a lot of grief and even more tears. Gradually I started to feel better, my stubborn attitude kicked in, and I was determined to get better. The doctors weren't sure I would even be able to walk, but I did. Within a few months I walked without any help. First I used a walker, then a cane, then I just walked, although I wore leg brace the first year that kept my left leg locked in a straight position. I even got back to a fairly fast walking pace, and went on regular walks. I hobbled around on a tennis court, hopping on one good leg and playing couples tennis with some friends of ours. I rock climbed, and kayaked, and got a recumbent bike so I could still ride with my family.

I grieved of what might have been, while realizing there were some things I could never do again, no matter how determined I was. During this time, several friends and family members started jogging (something I had tried for years to get a few of them to do). They really enjoyed the runner's high. Running is something I cannot do ever again. It is not physically possible to run, jump, or kick with no quadriceps muscle. So I grieved.

There were more surgeries to try to return function to my leg. Surgery to help my knee pain that happened because my leg didn't work properly. Surgery because the first surgery caused painful scar tissue to form a neuroma (nerve mass). Surgery to fix a pinched nerve in my right leg because of my change in gait. And there was pain, so much pain. Pain from the surgery. Pain from the resulting issues. Pain from my neck and back that had a previous issue, but were now being contorted in an unnatural position as I tried to swing a dead leg forward and walk. There were plenty of things to grieve. Then, a team of doctors and orthotists at RIC (now Shirley Ryan Abilities Lab) that worked to get me a lighter weight leg brace, that bent went I walked. I kept walking. I worked out. I pushed and pushed, and after sitting on the side lines for 2 years, I joined my family and a group of spectacular friends, and did a 10 mile Tough Mudder obstacle course.

This whole process has been a roller coaster. Lots of waiting and seeing how things will turn out. I have had to grieve, let go of things, evaluate the new circumstances and change course. As Chad likes to say, we "adapt, improvise, and overcome." That is exactly what we have done every step of the way. We cry. We brainstorm a new trajectory, and we move forward. We move through the grief, and work hard not to get stuck in it.

Now we have circled back around. Now as I sit here and type, I am grieving the loss of my "tumor". I have been thinking all this time, that in 2004 when symptoms first appeared, it was due to the tumor they found in 2009. For 14 years, I have been dealing with my "tumor" and all it involves. All the ups and downs, the surgeries, the tears and pain. So, when I first felt symptoms in my right leg in 2011, I felt fear. I was scared that the tumor had returned. I was afraid I would lose the use of my right leg that had been doing most of the work since 2009. Then we learned it was something different. A mystery neurological disease that was unrelated to the rare nerve tumor I had. I grieved some more. It seemed that lightening had struck twice. I now had 2 different problems that both had a very rare occurrence rate, which made finding solutions difficult as no one really knew how to help. I grieved the unknown, and gradual loss of feeling and strength in my "good" leg.

Now in 2018, I am grieving the loss of the "tumor" I thought existed. I now have to wrap my brain around the fact that I have had a progressive neurological disease for 14 years. I never had a tumor, or 2 diagnoses, it's just been one all along. I cannot begin to adequately describe all the poking and prodding, the appointments, testing, waiting, the cost of all of this (emotional, physical and financial). Today I have to grieve my past and my future. I have to deal with the reality of my new diagnosis, which can be a difficult disease. It is rare enough that they cannot really give me a specific prognosis timeline, or treatment plan that works for everyone. They know what has helped some other people, and they hope it will work for me.

Eventually, we all need to move on so we don't get stuck, but today I will just grieve. I know I will continue to fight, it's what I do. I don't take bad news lying down, I get up and consider it a challenge to rise above. Unfortunately, with all the above events, my fight doesn't pack the punch it once did. I grieve that too. Today I will grieve. Tomorrow I will adapt, improvise, and overcome.

With God's grace, we will continue to get through this, one day at at time. He will faithfully strengthen us for each day ahead. Graciously, the Lord has kept Chad and I together as a unit, lock step, through all the ups and downs. I couldn't be more grateful to my Savior for His amazing grace! To God alone be the glory!

What are you grieving today? How will you adapt, improvise, and overcome tomorrow?

Until Next Time~
Shari

Loss of Control

I admit it. I am a control freak. I like all of my ducks in a row.....a perfectly straight row, to be exact. If you knew me 10 years ago, you saw this attribute in full bloom! Health issues, age and a bit of wisdom have helped me learn to let go of a few things, but I will always be a planner. So, when things don't go according to my plan, it gets a bit uncomfortable (frustrating perhaps?) and I get irritated.

Our trip to Mayo Clinic didn't go quite like I expected, in large part because Northwestern Medicine "wasn't playing nice" according to my doctor. We requested ALL of my tissue samples about 6 weeks ago. Since I like to stay on top of things, I called to follow up with them 3 weeks later. They said they never received any request. I personally talked with the pathology department at that point, emailed a new request and paid $40 to overnight the samples to Mayo.

I then made sure the package showed up at Mayo, and got to the right doctor. Last week, it was here and in the right doctor. Then, we show up for our appointments today....

Turns out that Northwestern only sent 3 slides, that were already prepared with stain (doctor said like getting cooked meat instead of raw), instead of ALL the pathology as requested. The doctor then contacted Northwestern to get the remaining tissue, and the hospital refused to send MY tissue samples to Mayo Clinic so that they could properly diagnosis and treat me. Yup, that is irritating. 

As it turns out, the medical team here has seen enough to say with a fair amount of certainty that I do have CIDP and I did not ever have a neurofibroma. (Makes me wonder if this is why Northwestern isn't sharing?) Either way, I will begin treatment of low dose, weekly infusions of IVIG, and give it 4 months to start working. Then we will return to Minnesota again in January (yay) and repeat all the testing to see if there is any difference. 

In the meantime, I can assure you, Northwestern will get tired of hearing from me, until they give me ALL of MY tissues samples! (Chad says I am like a dog with a bone, so I won't let go until I get what I need). Mayo did not want to do a nerve root biopsy, unless they absolutely have too. The biopsy itself takes a big enough piece of nerve for testing, and will likely leave me with an additional neurological deficit. They will stay in touch once they get everything, and make their final, definitive decision on things (thought we would have that today, yep very irritating).

For now, I am still learning that ducks like to get out of line, and no matter how hard I try to keep them together, they frequently fail to comply with my desires. All of this makes me remember that my idea of control is all just an illusion anyways. In all honesty, I have absolutely no ability to make anyone else, or any situation work out according to my plan, and I don't want it to. 

I really do appreciate all of God's gentle (and sometimes not so gentle) reminders that His plan is different and better than mine. I can quit being like the little hamster in a wheel going around in circles trying to get somewhere, and rest in Him, knowing He knows exactly what I need, and exactly when I need it.

So, we will be home tomorrow. I am thankful to not be having surgery. I am grateful for friends and family who pray regularly, and send me a ton of messages of encouragement. Hopefully, I will continue to grow and these changes in my plans will bother me less and less as I get older. Lord, help me to be a more patient patient. One day at a time, right?!

Until Next Time~

Shari

Constant Sorrows

Have you ever knocked over a glass of milk? You watched it tip in almost slow motion, as it runs all over the floor, and soaks everything nearby. How did you respond? On a typical day, you may very well feel a mild annoyance, and rush to clean it up.

Now, have you ever had one of those days when your 2 year old is throwing a temper tantrum and while dealing with that, you burned breakfast? Maybe at that exact moment, your 5 year old is yelling your name from another room. You know, the kind of scream that makes your heart sink, and you instinctive realize that they are hurt. At the very second you rush to their aid (now trying to ignore that tantrum of your toddler, and the charcoal remains of your meal) the phone rings. It is suddenly so loud, and you feel you may explode. You are still hurrying to help your child when you bump a glass of milk, knocking it over, and it splashes everywhere. How do you respond in this scenario? Do you feel overwhelmed? Is anger welling up from within? Do you drop to the ground, scoop up the hurt child and just start sobbing because it all seems like too much?

I have been dealing with a lot lately. It seems like every day is the latter of the two scenarios. It isn't just the small glass of spilled milk that makes me want to drop to my knees in prayer and weep. By itself, I can deal with the pain in my neck and back. I can cope with the allergies, or migraines. Normal days make the nerve pain doable. Numbness, or loss of balance and falling, are each things I can accept. We still have some unanswered questions from Mayo. All the waiting and the unknown causes me to ponder various options and outcomes, the "might-bes" and "could-have-beens" often late at night when I am not able to sleep because of pain.

My life isn't special or unique. The majority of us deal with hundreds of small things on a daily basis. We all have to decide how we respond to the overturned glass of milk. We all have moments when we want to just curl into a ball and cry. I just started reading a new devotional book that encourages prayer and the reading of the Psalms. Thousands of years ago, King David felt sorrow over many things too. The Psalms are both a raw expression of emotion, and an encouragement from our Lord at the same time.

Psalm 77 is titled in the ESV as "In the Day of Trouble I Seek the Lord" and begins in verse 1 with:

"I cry aloud to God,

aloud to God, and he will hear me."

It has rained several times recently. The dark and dreary days feels as if they go on forever. They make me feel sad and like not doing anything. On the longest of days, when everything I am dealing with seems to occur at the exact same moment, and I don't think I can go on....I cry aloud to God, and He hears me. In the darkness, and in the pain....I cry aloud to God, and He hears me. On sunny days, when life seems ok, and all I am dealing with is one glass of spilled milk.....I cry aloud to God, and He hears me. 

I want you to know you are not alone, even when you feel like it. On days when you feel like you can't go on, or when the rain just won't stop, God has promised His people that He hears their cries. Our feelings betray us. The devil would like us to believe we cannot go on, and that we are alone. He tries to separate us from right fellowship with God and His people. We cannot trust our feelings and perceptions, but we can trust God's Word.

There is someone else besides you and me that knew this very well, that is Jesus. Isaiah 53:3-5 tells us that:

"He was despised and rejected by men, a man of sorrows and acquainted with grief."

Jesus knows sorrow and grief. He can empathize with whatever we are going through, and will help us to endure it (1 Corinthians 10:13). He knows far greater sorrow than we can ever know. As he prepared to go to the cross, he cried out in prayer to God the Father, and asked that this cup might be taken from him. Yet, Jesus knew he must go forward. He must go to the cross, to his death. Jesus knows the cup cannot be taken from him, and he prays for God's will to be done, and trusts Him fully to accomplish His plans. Jesus took our sins upon himself at the cross, with the result being his separation from God (Matthew 27). In those moments, Jesus knew a far greater pain than we are going through.

Some days it is easy to dismiss all of this by saying, "Yeah, but Jesus is God, of course he could do it. I really can't handle all of this." You are correct, you cannot. Jesus trusted God, and so must we. Will we do so perfectly? No, but we make a choice to trust God, and His Word. We ask him for help, and cry aloud to Him. We can know He will hear us, even when our minds tell us He will never listen. The truth is, we frequently have to deal with more than we can handle, but never more than God can handle. If we will turn to Him in faith and repentance, God is faithful and just to forgive us our sins, and He will also extend each of us the grace we need to get through each day.

So, yes, there have been a few tears lately, a few moments of feeling alone. There are times when I hear depression knocking on my door and I am tempted to answer. In those moments, the Psalms have really helped me to grieve, while still praising God. This new book has been a great reminder to pray. I know God hears me. I am never alone.

Until Next Time~

Shari

P.S. If you are interested in the book I mentioned it is Prayers of the Bible: 366 Devotionals to Encourage Your Prayer Life by Gordon Keddie.

I Was Only Trying To Help

We all know the feeling we have when a dear friend, or beloved family member is hurting, sick, depressed, or grieving. We feel helpless. We want to do something to help. In some ways, we need to do somethings tangible to feel useful, and let them know we love them. I understand this need. I am a "fixer" of problems. A trait perhaps most often considered a "man thing" to do. Over the years, I have learned to become a better listener, without listing out the steps to fix the problem (as I see it). I still find this difficult at times, as my mind works in a logical and sequential manner. I enjoy solving puzzles. When I hear a hurting friend say they are struggling, or they have a problem, I immediately think "well, let's fix the problem, then you can be happier, and in turn that makes me feel good to be useful."

I also have had moments when I am sharing my struggles with someone, and they pounce on me with a list things I can do to fix the problem. Over the years, people have bought me vitamins and supplements (or try to sell their brand to me). Given me medical or cook books. Sent me a mile high stack of articles and emails regarding treatment ideas or research. I am also learning something being on the other side of the "fixer." I am learning grace. To be very honest, my first response is irritation at times. I question why people would think I have not considered any of the options they are suggesting. I am a researcher by nature, and have read books, articles, blog posts, and many medical journals looking for answers over the years. I do eat a diet I feel is healthy for me. Perhaps the worst is my response to my several friends who sell the products they believe in, and have worked for them, when I think "No I don't want to buy product x, or I would have bought it." I feel guilty when people spend money to buy books and supplements, when I know that I will likely toss them. I have learned that people need to feel useful and they show love by trying to help fix the problem, just like I am guilty of doing.

One of the problems with being a "fixer" is that it is a way to make ourselves feel better. We feel the need to help, so we do, but in a way we think might be helpful instead of finding out what would actually be helpful to the individual suffering. I have come to understand that feeling of helplessness. I know that I have so many wonderful friends who care, and truly want to help me. They hurt because I hurt. I have to be gracious in my response to their offer of help, and hopefully they will be gracious in return if I seem to not take their advice. (Let me just take a minute here to ask forgiveness to those I have turned away with an unkind word. I am sorry. I am learning to think before I speak, but I am a sinner. I love you all, and would not want to hurt you, and I know you have a concern for me at the root of your offer.)

You all know how I love an analogy, although sometimes I have trouble thinking of a truly effective image, but I am going to try! I am sure you have been in a grocery store when you realize you are in the way of another shopper. You swerve to be considerate, thinking you will give preference to the other person, and patiently wait. But then, just as you swerve, so does the other shopper! You are both trying to do the "right" thing by helping the other person, but in the process you both have gotten in each other's way again! I have had this happen numerous times, and occasionally we have both then corrected our swerves and again ended up in the way. This situation is uncomfortable, and frequently ends in a nervous smile and one person saying "you go ahead, I won't move."

There is absolutely nothing wrong with wanting to help someone else, but perhaps we should take a minute to listen and identify how we can really be of use. For me, I would prefer someone just say "how can I help?" If I need a ride, or someone to grab a prescription, or mail a package for me, I will ask those whom have offered to help in the ways I need. Some people may not have a tangible way that they need help, maybe a kind word or card, and a listening ear without judgment, is the best "fix" you can give them. Prayer is always a wonderful gift! When we serve others the way they want to be served, instead of in the way we want to serve them, we avoid the nervous smile. We walk together, instead of one of us stepping aside, and telling the other one to go ahead and pass by.

Hopefully, you understand that I am not upset with anyone, I am just trying to say that we could all do a better job of helping the hurting in a way they want/need to be helped, instead of a way that we think will solve the problem. The truth is there are not many things I haven't tried (at least for a time) and the only thing remotely useful thus far has been dietary changes. I lost weight, lowered my cholesterol and blood pressure, but I also continued to worsen with the neurological disease, so clearly it is not a cure-all. I am thankful that your aunt's neighbor, or your cousin's best friend tried a certain diet/vitamin/doctor and got much better. I really am glad to hear that, but I also know that all our bodies are very different, our diagnoses are not the same, and a "one size fits all" approach does not work. When people ask about my dietary changes I tell them, but I do say "it worked for me, but I doubt it will work for everyone." This may be a whole different post, but just the fact they call it "practicing medicine" gives us a glimpse into the difficulty of how different people's bodies respond differently to the same health issue. This is why you can have many people with a herniated disc, and have them all have different outcomes. One gets better, or maybe never has any pain. One needs some therapy, a steroid injection and takes a few months to feel better. Another may need surgery or may be permanently disabled. Doctors tell me half the population would have a herniated disc show up on an MRI, but most never know it because they feel no pain! I am sure you can begin to see the difficulties with treating every person with the same plan!

At the end of the day, hopefully we can all learn to love less selfishly, pray more diligently, and extend grace more consistently, growing more and more each day to reflect Jesus in our lives. I love you all, and am so thankful for your prayers! 💜

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

Holding Pattern

I am currently sitting in a quiet corner at Mayo Clinic, which is a hard thing to find around here, looking out the windows, watching the world go by. We just finished a late lunch, after I had been fasting for a test all day, and I am now enjoying my first cup of coffee for the day at 2 pm. Since my last post, it has been a whirlwind of tests and appointments. I still have a bit of a spinal headache and low back pain from yesterday's spinal tap, mixed with this mornings test that was uncomfortable, then the fasting before another hour and a half in an MRI tube (third time in an MRI machine since last Thursday), all tipped the scales this morning for the inevitable meltdown. This trip has been exhausting, both physically and emotionally, and stressful, both mentally and financially. I finally needed to go into a bathroom and have a good cry.

First, can I just say how truly thankful I am for all the texts, and emails, and FB messages/comments sending encouragement and letting me know you are praying. It has been a real blessing to know that others are thinking of me and praying for me, even when I have been at the end of my rope, too tired to offer up a prayer of my own beyond crying, "Lord, help me." So thank you all!

Next, I just want to say, if it has ever been suggested that you should come to Mayo Clinic for any medical issue you are dealing with, DO IT! I was not completely sold on the idea. I worried it would just be an expensive waste of time. While it hasn't been cheap, it was a great decision to come. They run this place with more precision than the military, more compassion and friendliness than any local hospital, and seem eager to learn from any mistakes. We only had one issue, which lead to the 3rd trip to the MRI tube, and it got the Neurology, Radiology, and Patient Experience teams, along with the chairs of both departments, to communicate what the issue was, why it went wrong, how to fix it. Then they informed us of the loop hole they found in a new computer system that caused the miscommunication. They are working to fix it, and plan to follow up with us in a couple weeks to let us know what solution was implemented to make sure it doesn't happen again. WOW!

Also, if you stop moving anywhere for more than a brief minute, a volunteer or passing staff member is sure to inquire if you are lost and need directions. It really has been remarkable! Like 5-star hotel service, but in a medical setting. There is NO gap in medical records communication either. Their portal (or app) gives you complete access to tests results, reports, doctor notes, and everything in between, in a very short time. I had some of the spinal tap lab results available in my portal before I even was allowed to get up off the table!

Now, I will give you the easy version of where we stand right now (I will finish up today with the detailed medical version in the next section). If you read the last post, you know we got some difficult news to process. While I have undergone several more tests, and officially had my consultation in the office with Dr Dyck, we haven't found out much more in terms of definitive diagnosis, as they are awaiting the pathology slides from Northwestern Hospital. That can take a few weeks, so we are in a holding pattern. They really want to see those slides, and possibly do their own biopsy, before officially confirming the diagnosis. After those last few steps, they will give me the prognosis for my case, since this disease can vary in degree of severeness.

So, CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy) has a close sibling. They are in the same family, share many of the same physical traits, and mannerisms, but like any family member, there are many differences in personality traits. That is the best way I can describe the alternative diagnosis of CISP (Chronic Inflammatory Sensory Polyradiculopathy) They are so similar, they are hard for us to even tell apart, like identical twins. The doctors, like the parents of twins, seem to clearly see the differences, while we see identical ones. In the end, it doesn't really matter, since they are treated in the same manner, and the doctor says I either have a non-pure form of CISP or a non-pure form of CIDP, the biopsy should push them over the edge towards one or the other. Which leads to our return visit in the middle of September, when it is likely they will do a biopsy, and we will go home with the final verdict, and treatment plan. In the meantime, I appreciate your continued prayers for strength and wisdom.

As for the rheumatological and chronic pain issues, the rheumatologist does agree that I am in remission from whatever diagnosis I had back in 1998. I have been off all of those meds since around 2009, and was feeling pretty good for a couple years. I do have constant neck and back pain, and testing shows worsening of the degenerative disc disease. She did say that it was a early onset, since this much degeneration is something normally seen in older patients. Our daughter was diagnosed with it at age 17. There is a genetic predisposition in some people, making them more prone to an early onset form, and it can become debilitating. Additionally, the change in my walking gait since the "tumor" surgery is contributing to my pain and worsening degeneration. I was referred to a specialist, but that appointment will also have to wait for our return trip. I just wanna go home (and we will soon do just that!). My general neurologist, Dr Boes (pronounced "base") added me to the end of his day at 5:30. He will have the MRI reports and scans that I had this morning by then, and be able to give us the final game plan, and answer remaining questions. We will be sleeping in our own bed tonight, although it may be after midnight by the time we get there! I am still excited to be heading home! Yay!

For all the medical nerds like me who are reading, I can give you a few more details:  😃

• MRI's all showed my peripheral nerves and nerve roots are inflamed, particularly at L2-3, L3-4. This inflammation was seen on the original 2009 MRI at Northwestern which the report labeled as a likely nerve sheath tumor, but also said they could not rule out an inflammatory neuropathy (oh, how I wish I knew this then). The inflammation has returned to the remaining sections of the left femoral nerve, and worsened in other nerves. As a very cool side note, the portal/Mayo app includes the actual images of the MRI scans! That is way better than asking for a disc to take home and look at!
• The EMG was abnormal, indicating both the demyelination of nerves in upper and lower extremities, and confirming that this is not purely sensory, but also a motor neuropathy. That being said, CISP normally has a mostly sensory presentation, and normal EMGs, where CIDP presents with mostly motor involvement, less sensory, but EMGs that look like mine.
• Spinal tap showed elevated protein and albumin but lower IgG levels. Elevated protein is common in CIDP, but usually at a very elevated rate above 200. Mine is 69, normal is 0-35. Labs were mostly normal, which is good since a lot of them were for other diagnoses like: POEMS syndrome, pernicious anemia, and neoplastic disease. A few of the numbers were slightly off, but nothing of consequence.
• Somatosensory Evoked Potential and Quantitative Sensory testing were both abnormal, but apparently in an expected way for either CIDP or CISP. They again show upper extremity involvement.
• Still awaiting brain MRI results, and did not have the neuro-ophthalmologist appointment yet. This is more precautionary than anything, I think, because of the mild optic neuritis I had a couple months ago. We will have this last MRI result at our 5:30 appointment today, and the eye exam at the follow up trip in September. 

That about sums it up for now! I really am sorry for all the super long posts lately. You people rock! I know many of you have read every word, and I am impressed with your persistence.

We will be coming back to Mayo. We are fairly certain there will not be multiple return trips, but then again I came here with hotel reservations in NY, thinking we would only be here a few days (those darn expectations). Of course, I also thought I had a tumor AND a neurological disorder, and am leaving here with doctors 99% convinced that I have had a neurological disease since 2004 when symptoms first started, and no tumor ever, so things do change. I am leaving here with no spoons, and a lot of emotions to work through, but I am leaving here encouraged by family and friends. I am thankful for a husband who loves me, and is the strongest person I know. He masterfully pushes my wheelchair through a crowd, while pulling a suitcase, and does it (mostly) without complaint.  I am so thankful for my loving Savior who strengthens me when I am at my weakest, who uses me in waiting rooms, and who lovingly and graciously keeps a smile on my face through the dark of valleys. Praise be to God!

Until Next Time~

Shari


P.S. I forgot to mention that I got to take a Tesla for a spin. The T3 Tesla MRI machine, to be exact :) Supposedly stronger magnets for better imaging. 

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.

Uh-Oh!

Ok, ok, I know this will be hard to believe given my usual attention to detail and rigid organizational habits, but I made a mistake. A big mistake. The kind that causes some serious issues, and tears, lots of tears.

As it turns out, about 2 months ago when I got the appointment at Mayo Clinic, I booked hotels for our stay. We were told to plan to stay 3-7 business days for appointments (they are not open on weekends), and keep our travel plans as flexible as possible. So, we decided to stay in one of the hotels that connects to Mayo Clinic via the underground subway tunnels for the first 3 days. Then, we we're going to head to Minneapolis for my weekend off, and then back to the first hotel near Mayo for 3 more days. We figured we could cancel any days we didn't need, and were really hoping we did not need to add any more.

Hotels near Mayo run at full capacity nearly constantly, and are booked days, if not weeks in advance. After seeing the doctor yesterday, and getting the game plan together, it turns out our plans were very accurate. My final appointment for this trip is on Wednesday morning next week, so we can see the doctor, check out and drive home. No extra reservations needed. We do apparently need to come back once more, in about a month or so, which we did not know until yesterday, but I digress. So, what mistake did I make? Oh, wait until you hear this! (Some day in the future, we will get plenty of laughs out of telling this story, but right now it is #toosoon)

We arrived in Rochester, Minnesota on Tuesday evening. I strolled into the "Hilton Garden Inn Rochester Downtown" hotel, and gave them my name. The clerk searches and searches and asks if I am sure about the date and suggests that we might be at a different Hilton hotel nearby. I tell him, no I am sure my reservation is at the "Hilton Garden Inn Rochester Downtown" and have a confirmation email. Assured they must be making some mistake, I did not hesitate to whip out my phone and show him the confirmation number when he asked. I immediately noticed the expression on his face change, as he looks at me and says he found the problem.
Turns out we are at "Hilton Garden Inn Rochester Downtown" in Minnesota.
My room is booked at "Hilton Garden Inn Rochester Downtown" in New York.
Um.....

Now, THAT is a problem!! We are over 5 hours from home, there are no hotel rooms available near Mayo (none, and it is even harder when you need an accessible room!). To make matter worse (is that even possible?) I got a sweet deal, and saved us a bunch of money on our 3 day reservation by paying 30-days in advance with their non-refundable, non-transferable, non-cancellation policy option.
Um.....

So yeah, that is how our trip started. We spent at least an hour on phones, and laptops, scrambling to find somewhere to sleep (besides our car or a park bench). Thankfully, we did find a room! It does not have an accessible shower. It is not attached to Mayo's subway system, and therefore not as convenient, but we are not sleeping in the car at least. Praise God it is only 15 minutes away and didn't have to be further!

Hilton has also been trying to figure out a way to refund our money (although that hasn't happened yet), and they were able to transfer my New York reservations for next week, to a similar (but of course, more expensive room) here in Minnesota, which is MUCH closer to Mayo than New York! It is closer than our current hotel, and will have an accessible shower, so only these first 3 nights will be an issue.

Things aren't working out exactly as planned, that's for sure! I am grateful I was already working to manage my expectations!! Things worked out ok, but definitely not how I expected. I am praying that my stupidity might not cost us the 3-day stay cost in addition to the hotel we ended up at, so I hope they truly do refund the money.

We had my eval yesterday in neurology. The doctor ordered a bunch of tests. This morning, a boatload of blood was drawn for labs. This afternoon is the first of 4 MRIs. Then I have an EMG, a spinal tap, and consults with each: peripheral nerve specialist, rheumatologist, and neuro-ophthalmologist. Each specialist adds their testing to my schedule as needed.

Unfortunately, I cannot get in to one of the specialists until August 22nd. Tests are spread out over the next several days, with lots of free hours for us to sit around and get bored. When I do have an opening in my schedule, we can show up in the early morning hours at the specialist's office, try to get my name on a cancellation list, and then sit there all day, waiting to see if they will be able to work me into the schedule. We are REALLY hoping that we can make that work, instead of coming back in a few weeks. Most people who make it on the list are here by 6:30 am to get in line!! They take 4 or 5 names a day, and try to get them in, but there is no guarantee. You have to stay in their waiting room also. If they call your name, and you are not right there, you miss your chance. We will be able to be there tomorrow (Friday) and also Monday, since any appointments on those two days are scheduled in the evening.

Continued prayers for strength, lower pain levels, patience, and God's favor that we might get in to the peripheral nerve specialist before we come home. If that does not happen, I may make the trip back up here alone (or with any friends who may want to push my wheelchair around in exchange for free meals and share my hotel room.....I promise the room will not be in New York!)

Thank you all for praying, and sending encouraging texts, emails and messages! I am worn out already, and I have several more days to go.

Until Next Time~
Shari

A Long Way To Go

A few years ago, I read a blog post about a woman who was chronically ill. She mentioned starting each day with a limited number of spoons (Yep, she was holding actual spoons for a visual prop). Some days she had several spoons, if she was having a good day. On other days when she felt worse, she had only one or two spoons. After I read that article, I shared it with Chad. Since that time, we have used that same expression. It is not uncommon for Chad to come home and ask me how many spoons I have left 💜

Some days I feel great upon awaking, and have many spoons ( a lot of energy). Other days, especially days following busy days, I have few (if any) spoons. As I plan my day, I have to choose wisely what things are most important and do them first, assigning each task the needed number of spoons. Many days I run out of spoons before I finish my list. Occasionally, when I have a really good day, I try to catch up on everything, and then crash, needing several days to recover. I am still working to find the balance that is needed to accomplish necessary work, without wearing myself completely out and needing to rest for days.

Today we are headed to Minnesota for my appointment at Mayo. Just over 5 hours from our door to the hotel. I am not looking forward to the long drive, the long periods of time in waiting rooms, and exam rooms, the inevitable tests, and the poking and prodding that will result. I cannot avoid the upcoming fatigue and increased pain that is sure to ensue.  I will need to be as careful as possible to rest when it is feasible, and let Chad help with things he can help with, so I can preserve spoons. We have a long drive, followed by an unknown number of days at Mayo, and then a long ride back home.

Every parent dreads the words that virtually every child utters at some point on a long road trip:

"Are we there yet?"

It is easy on a long road trip to grow tired, bored, or uncomfortable and wonder when it will end. Just like children, we would like things to be smooth sailing, fun and exciting without all the drudgery and waiting. Unfortunately, life doesn't work like that. Life is just like my upcoming trip to Mayo. There are highlights and lowlights. The are bumps, and turns, and occasional missteps that may cause us to travel in circles a while before finding our way forward again. We can quickly find ourselves wondering "are we there yet?"

The answer to that question is resounding NO! We have not, and will never "arrive" (at least not this side of heaven). We may gain victory over some areas in our lives with God's help, but the journey continues with all of it's struggles. If we find ourselves thinking we have it figured out, we have reached the finish line, or have "arrived", we should quickly check our hearts for pride and unbelief. 

I have heard many times that "the more we learn about God, and His Word, the more we realize how much we don't know." I think that lesson applies here. While we will never achieve perfection in our lifetime, we should be able to look back at our lives, and see that we have made some progress along the way. If we are still hanging out in the parking lot where we started, or traveling in circles never getting anywhere, we should be examining our hearts to see if we are truly in Christ. 

If your faith is in Christ alone, you can know that God is working in you throughout the journey. Thankfully God gives His children grace for today. If I start the day with 10 spoons or just 1, ultimately doesn't matter, but what does matter is whether or not I am found IN Christ. I am responsible to prioritize what I do with the spoons I am given today, and make decisions on where to expend my energy. Am I looking to Christ for grace and strength, or trying to get by on my own merits? Will I glorify God this day with all of the spoons He has given me, or live only for myself? God's grace is sufficient to get me through this trip, one day at a time. He will get you through your journey as well, if you believe and repent.

I continue to ask for prayers during our trip. May God be pleased to provide us with some answers, safe travels, and enough energy for each day. 

Stay in the Word, and cling to Christ on whatever journey you are on this week! How will you use your spoons today?

Until Next Time ~

Shari

Managing Expectations

If you have been around Chad or me very much at all, I am sure you have heard our thoughts on expectations. When my doctor told me that I really needed to contact Mayo Clinic for an appointment, "expectations" were on my mind. Initially, I wanted to be careful and not expect that Mayo would take my case. I didn't want to be disappointed. I tried once a couple years ago, and they did not offer me an appointment.

This time, as it turns out, the neurology department did offer me an appointment for August 1st. So it appears that Rochester, MN will be our vacation spot this year. Now that I know I am traveling to Mayo, I still have to be very careful about my expectations. My doctor thinks that if anyone has seen another patient with these symptoms, it will be the doctors at Mayo Clinic. She feels that even if there isn't a name for this disease, they may at least be able to offer advice on prognosis or a better course of treatment, that could perhaps ease my suffering.

Trust me, that sounds wonderful! I have had several very difficult months. The pain has gotten much worse. My current plan has basically been to just survive each day, try and get some sleep, then wake up and do it all over again. The truth is, I am not particularly hopeful that Mayo will offer much insight, but I can feel myself wanting to believe it to be true. This is why I started thinking of expectations. We always tell people that managing your expectations is the key to a happy marriage (or even a happy life). I joke that the only thing I expect Chad to do is bring home a paycheck, so anything over and above that is just icing on the cake! If you set the bar low enough, he is bound to surpass it, and look like a rock star! haha :)

I am convinced that unmet expectations can quickly become anger, bitterness, and depression. We place expectations on ourselves, our spouses, children and friends, whether we realize it or not. It may not be a conscious thought. It might be a very small expectation. We can expect our husband to notice we need milk, and expect him to stop on the way home to buy some. We expect our children to get good grades or keep their rooms clean. We expect our friends to call us and check how we are doing.

Now, none of these things is particularly difficult to accomplish. Problems arise when we start thinking that someone else will do something, and then they don't do it. We can quickly start to feel angry, bitter, resentful, sad, or one of numerous other negative emotions. Often times, the other person is completely unaware that you wanted them to do something. They may have no clue that they let you down. In fact, we tend to treat others as mind-readers. ("I shouldn't have to tell them, they should just know.") Over time, all these little unmet expectations can break apart marriages, damage friendships, and destroy parent-child relationships. We can start to feel like nothing ever goes our way, and become very unhappy.

Chad and I joke about this, but the truth is that many years ago we learned to start managing our expectations for each other. There are certain things that are non-negotiable (ex. being faithful to each other), but mostly we have learned to ask when we need something, and tell each other when it is something we really need the other person to do. We let a lot of things go, and don't look to the other person to make us happy. The truth is, Chad does not complete me. Although we do quote that line from Jerry Mcguire, it is unfair to expect another person to "complete you."

Managing our expectations is really about realizing that we are sinners. We will disappoint others. We will do what we shouldn't, and fail to do what we should. We will let others down. This is not an excuse not to try, but just an honest evaluation of ourselves and others. We should try to focus on loving others, taking care of our own needs the best that we can, and being honest with each other when we need help. Then we can start moving more in the direction of contentment, and move further away from anger and bitterness. Don't get me wrong, this isn't easy. It is contrary to our nature, and requires diligence.

Even as I type this post, I can quickly start to think of how great everything would be if they had a cure for me at Mayo. If I go there expecting a life without pain or disease, I will come home very depressed indeed! If I can keep my expectations to a minimum (ex. the doctors will do their best to offer me some answers), I am less likely to be devastated on the return trip.

My greatest realization is that no one, not even my Creator, promised me a life of ease. I do not deserve the best of everything. I do not deserve riches, or fame, or happiness. The Bible teaches us just the opposite. As a believer in Jesus Christ, (one who has acknowledged my sin, knows my need of a Savior, and my inability to do anything worthy of earning my salvation) I am promised eternal life with God, but I am also promised hardship, persecution, trials, tribulations, and testing of my faith.

"My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience." ~James 1:3

If I fail to repent of my sins, fail to trust in Christ alone for salvation, I am promised only eternal wrath. When I know that what all my thoughts, words, and deeds really deserve (apart from Christ) is hell, then anything I enjoy here on earth is just icing on the ultimate cake.

"For this light momentary affliction is preparing us for an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." ~ 2 Corinthians 4:17-18

With expectations of seeing my Savior face-to-face one day, running into His arms, and leaving this body, world, and these troubles behind, I know that I will not be disappointed! Knowing and trusting all of this, I can get through these trials, one day at a time, with contentment.

I pray that Mayo Clinic will be able to help me in some way, but at the end of the day, my hope is not found in Mayo, it is found in my Savior, Jesus Christ alone. So, I will travel to Minnesota with Chad and expect only to have a few days away from home, see some things we have never seen, and perhaps learn something new along the way. That doesn't sound disappointing at all! <3

I am sure that with the long road trip, several days of appointments and tests, and most likely less sleep than normal, my days will be filled with pain. Your prayers would be very much appreciated! Pray for strength and that I will manage my expectations, and not come home disappointed.

Until Next Time~
Shari

Second Time Around

Last week, we failed our final construction inspection with the city. While the elevator itself is working and state approved, the entire project is under a local building permit. The main reason we failed was due to little details that had been overlooked. These things should be easily remedied this week, but it is just a symptom of a bigger issue. I won't bore you with all the stories of delays, and problems, and bad workmanship, and worker issues. I could fill a page or two with complaints and vent about the last several months, but I will try to keep it brief.

There is a saying "the devil is in the details" which is definitely true during our elevator project, but even more true is that God has been in the delays. I am a hard-working, type-A, detail-oriented person. I can attest that being home with these slow-moving workers, watching them skip steps, and forget things, has been SO painful! They probably aren't thrilled with my constant corrections and reminders either, but I learned early on in this project that if I didn't say anything, it would just grow into a bigger problem tomorrow. If you know me, then you know I am not one to shy away from confrontation! This elevator project has had it highs and lows (or should I say ups and downs?). It has definitely tested my patience!

The whole construction process started in December with a quote, and then moved to a signed contract and deposit on January 9th. At first, there seemed to be a possibility that I could have a working elevator by Easter (which happened to be on April 1st this year.....April Fool's Day). The "finish line" soon became April 15th, then maybe May 1st, then "by the end of May for sure."

I love to take the shortest, straightest route between two points, and hurry on to the finish line. Not that I rush through things and sacrifice quality, but I don't dilly-dally. Schedules rule, and I am all about staying focused!

In life, and as well as in construction projects however, we frequently end up on a winding, crooked, indirect road, full of cracks, bumps, obstacles, hills, twists, and turns. The journey is hard work and difficult, and at times seems impassable and unlikely to end. It is in those moments that we can have real growth. We learn a lot about our selves, like what is really important to us and how we treat others when we are under stress. Taking the long way teaches us how to deal with frustration and disappointment. In the end, we can grow bitter and angry, or we can grow more patient and loving.

Life isn't a race. Just getting to the finish line isn't the point. Whether the elevator remodel took 6 days, or 6 weeks, or even 6 months, isn't what really matters at all. What really matters is that at the end of the project the elevator works, and even more so, that I learned something along the way. I need to remember that each of the workers were also created in God's image, and I am to show them love, as a faithful witness to Christ. (Trust me those workers honestly drove me crazy at times for numerous reasons)

This isn't to say we have to be doormats. I actually had a confrontation with one of the workers in which I had to tell him he was not welcome to come back into my home after he yelled and swore at me. These trying situations require us to remember that, apart from Christ, there is nothing different between "them" and "us". I can also say that because the job went on so long, I got to know a few of them on a deeper level, and had several opportunities to share the Gospel with one at length.  That would not have happened if I just let anger rule when the schedule wasn't met, and the sloppiness persisted.

When things don't go according to our plans, or confrontations happen with other people, we can choose to recognize that this is an opportunity to learn and to grow, being thankful that God, The Great Carpenter, is busy sanding and chiseling to rid us of our rough spots, revealing our sin to us. He is there graciously allowing us to see our sin, repent of it and trust in Him, and hopefully even use us in the midst of the chaos to further His kingdom; to share the hope found only in his Son, Jesus Christ.

By the end of this week, we fully expect that the remaining details will be completed, the village will give us final approval, and we can take down the orange building permits that hang in our windows. After that, some finishing touches (new light fixtures, towel racks, painting, etc) should be all done by mid to late June, and this will all soon be a distant memory. We will have reached the finish line, although the path we took to get there will have been more bumpy than expected. Hopefully we will be a little wiser, having learned more about ourselves. More importantly, I hope I learned more about God and His providential care. I pray I have learned that I can trust Him more fully than I did when this all started, knowing He has steered me along this winding road. I pray that He used me through this all for His glory, and my good, and that He is at work in the heart's of a couple workers that I would have otherwise never met.

I pray you can see God at work guiding you along whatever long, tiring, and difficult path you are currently traversing. One day you can say "I have fought the good fight, I have finished the race, I have kept the faith." (2 Timothy 4:7) and you will hear Him say, "Well done, good and faithful servant." (Matthew 25:21)


Until Next Time~
Shari

Update: Got the keys to my ride!

It's About Time

Hello! Thousands of seconds have ticked by between my last blog post and this one, which is literally about time. With very little thought I can come up with a long list of song lyrics and sayings that mention the word or concept of time. Some talk of "time flying by" while others ponder "making up for lost time." We can surely all admit to "wasting time" at various points in our lives, and I bet most of us have been told that "time heals all wounds." While that may not be totally true, I do think time can make us remember things differently than we felt when going through the events.

Looking back causes me to reflect on a number of physical abilities I used to have, and think of them in a more favorable light than I perhaps once did, though I am quickly reminded to not spend my remaining years looking in the rear view mirror. Contentment comes when I choose to embrace this moment in time, be thankful for it, and enjoy where I am right now. Minute by minute I get through each pain-filled day by God's grace, not by reminiscing about what used to be, or what could be, but by simply being grateful for what is.

So, the topic of time was on my mind since I saw the cardiologist today. I completed the 30-day heart monitor, and then tried 30 days of medication for the arrhythmia I have. Thankfully they were able to record a few of the events on the heart monitor, so an implanted device is not necessary. YAY! They did not see any A-fib (which was their biggest concern). (For those of you interested, there were PVC's, and PAC's that caused atrial runs/PSVT.) I have decided since this isn't dangerous, to forgo any more medication at this time, and just follow-up with the doctor if anything changes. Thank you all for your prayers, and praise God that this is nothing serious!!

The constant pain continues, some days being worse than others. I manage each hour as it comes, trying to minimize medication usage, but still get enough relief that I feel halfway decent. It is quite the balancing act! Upcoming appointments with both the neurologist and new rheumatologist to discuss long-term treatment, will hopefully provide more relief than I am currently experiencing! The battle continues one day and one medical decision at a time. I still covet your prayers! This is a long, hard road I am on, that comes with many difficult decisions to be made.

The elevator has been on hold, as we have been awaiting a backordered door. We had anticipated being done (or nearly done) by now, but we have hit one snag after another. "If it can go wrong, it will" pretty much sums up the construction process thus far! Lord willing, we will get things wrapped up and inspected by the beginning of May. Stay tuned for final pictures!

Hopefully each of you will make some time to enjoy this beautiful day! Each day is a gift to be thankful for, so stop looking in the rear view mirror, and look around at where God has brought you to in this very moment, and give Him thanks and praise for bringing you here!

Until next time~
Shari

Garbanzo Beans and Other Things

Many years ago, when our children were actually children, Chad and I were having lunch along the lakefront near the planetarium in Chicago. I was on one of my health kicks, and had made a new recipe for some bean salad, that I packed without tasting first. Sitting in the grass overlooking the water, we started to eat. I soon realized that I was no fan of garbanzo beans, or at least not cold, out of a can, in a bean salad. I started to pick them out, and fling them over to the side, where the seagulls instantly swooped in to help themselves. (I will digress for just a moment, because this day has two funny stories!) If you are not aware, seagulls can be very aggressive and unafraid when trying to eat your lunch, and we actually got up and ran away leaving most of our items, including cooler and blanket, because they were literally swarming us, and a bit scary!

But, the reason I bring this story up, is that the seagulls, while they did seem to enjoy our chips and sandwich we left behind, apparently they did not like garbanzo beans either. One gull after another picked one up in it's beak, only to spit it back out. We were laughing about all of this, and it is one of those memories you tend to bring up from time to time.

I have been a bit MIA lately on social media, and even in real life. I have had to cancel several visits with friends, and even some doctor appointments. I have been dealing with a LOT of pain. The doctors also decided to try another 30-day wearable heart monitor before they implant the long term one. This is part of my prayer request by the way. I am 16 days into the 30 days, and still have not been able to record the intermittent palpitations I have been having. I am praying for a strong one, that is captured on the recorder in hopes of avoiding the implant.

In addition to all this, I got a cold last week. A cold that has hung on through several boxes of tissues, and not been helped by OTC cold meds. A cold that has lead to a deep cough and plenty of sinus headache pain. Last night, I was feeling very sick, and my headache was getting worse. Chad picked up some Panera soup for dinner, and I got worse as the evening wore on. That headache turned into a horrible migraine. With all the cold meds, pain meds, steroids, and other things I have been on, I waited too long to take the migraine medications, because of drug interaction worries. I finally called the pharmacist around 7 pm, and started the "rescue med" drugs. After several hours of pain, made so much worse with every cough and sneeze, and the inevitable vomiting because of the migraine, I dozed off, cuddled up with my bucket a few times, only to wake up at 2 am and start the course of meds all over again. By 5:30 this morning, my headache was finally gone, but my cold seems worse today.

Garbanzo beans, or you may know them as chickpeas, are perhaps still not my favorite, but I do LOVE hummus, and was surprised to know that is the main ingredient. So, why do I bring this all up? (those with weak stomachs may want to skip ahead to the next paragraph) The "soup" Chad got me was the turkey chili, which has garbanzo beans, and reminded me of the story above, but also, after last night, I was reminded how much I am not a fan of them.

The chronic pain is very difficult, but when it is increased with a flare-up, and then compounded upon with other problems, it becomes unbearable. The kind of unbearable that leaves you weak on a bathroom floor, cold and sick, hugging a toilet in the middle of the night, and begging God for relief. I will be honest I asked for healing, but I also prayed for a more permanent kind of relief.

On a good day, my hope is to grow old with Chad, see future grandchildren grow up, and hopefully walk with the Lord. What joy could be greater than to see your children, and grandchildren, generation after generation, come to know and love the Lord?! (3 John 1:4; Psalm 78:6)

On a bad day, this light and momentary suffering draws me into the strong arms of my loving Savior, and makes me long for glory, when He will wipe every tear from my eye, my pain will end, and I will dance again. Today is likely not that day, but if it were, I would be ready. No matter what your circumstances are, or how old you are, this day is fast approaching and comes without warning. Are you ready?

I am very thankful for a my husband who was right there with me all night, losing sleep, so that I might find rest. I am thankful for my dear friend, who is currently studying the book of Job with me, as last night I was feeling a bit of Job's despair. I am also thankful to pastors who faithfully expository preach through God's word. I have been re-listening to the series on Job from Pastor Megchelsen, which has been a wonderful reminder of God's purpose in suffering, my call to suffer well, and to know that my life is not meaningless. Sometimes, in the midst of all this, it is easy to feel like I have no purpose, and his sermons this week have really reminded me that even in the little things I am able to do, God is at work.

I pray you are able to lean on the strength of God even in your weakness. No matter how dark the moment is, God's light does shine through. Keep your eyes fixed upon Christ! I truly appreciate your prayers. This has been a rough couple of weeks. May God's will be done! Thankful for you all <3

Until Next Time ~
Shari

Wait and See

Thursday morning started like any other, except my left eye was irritated and my vision seemed a little blurry. Yesterday I woke up, and it was worse. I quickly noticed that when I covered my right eye, everything seemed dimmer and gray. My eye ball actually hurts, not a lot mind you, but enough that I feel it, and that isn't normal. The medical geek in me decided to do a pupil reaction test to light, and quickly discovered that my left pupil dilated (it should constrict) when I shined a light in my eye. The right side seems normal. This concerned me enough to call my optometrist and go see her a couple hours later.

She confirmed that I had "afferent pupillary defect" (pupil dilates instead of contracts), and that my left optic nerve was larger than the right. With the other test results, symptoms, and my complex medical history, she said she thought it was Optic Neuritis. She called the neuro-ophthalmologist at Aurora Eye Clinic, and they squeezed me in an hour later. This doctor (who was wonderful by the way), said she thinks it is likely Optic Neuritis, but my vision had not deteriorated enough to justify the normal treatment plan of 3-day IV steroids, which will make me "very sick" according to her, inpatient at a hospital. I am supposed to call immediately if anything changes, and I will see her again next Friday. She said I may have caught it early enough that it hasn't gotten that bad yet. Symptoms sometimes develop over 7 days or so.

So we wait and see. At least I hope I still see. Thinking a lot yesterday about how we take for granted so many things our body does with ease, until it doesn't. I watch people breeze up a set of stairs without a second thought, and I wish I had been more thankful for that ability. Now, I look around and see beautiful colors, and am thankful for my vision. May I encourage you today to take a step back, look around, and spend some time being grateful for some of the functions your body performs without a second thought.

"I will praise you, 

for I am fearfully and wonderfully made;

Marvelous are Your works,

and that my soul knows very well."

~Psalm 139:4

Please pray that whatever is going on clears up on its own without getting worse. If things do progress, pray that I will catch it early and the treatment would be effective, without making me "very sick."

I stumbled upon this song this morning by Chris Tomlin, and am so very thankful that God is "sovereign in my greatest joy, sovereign in my deepest cry." Be encouraged, in whatever you are facing today, if you are in Christ, God is with you.

Until next time-
~Shari