...and After

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

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

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

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

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

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

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

Thanks for following along on my journey with me!

~Until Next Time
Shari

Before...

Greetings from Minnesota!

My husband, Chad, and I came to Duluth for a couple days to relax before heading back to Mayo Clinic to repeat all the testing and see the neurologist before heading home. It has been seven months since I was here last time, and over a year since we first found out the proper diagnosis.

We drove all day today, and will have 3 days to enjoy Duluth and the surrounding areas, before driving south to Rochester on Tuesday. Tomorrow we plan to head up north to Grand Marais, to spend some time outdoors. Sunday and Monday we will be attending church here in Duluth, and checking out the local breweries of course! SO very thankful to have my new power chair for this trip. It was great today to cruise along the lake outside our hotel, and even raise up to sit at a high top table at the bar.

I will be doing three tests before I see the doctor. Each test checks the function of my nervous system in different ways. I would ask for prayer starting at lunch time Tuesday through Wednesday afternoon. There will be an extended period without any form of pain medication, not even a baby aspirin! For someone like me that needs around the clock pain control, this will be a rough day, especially with the tests themselves adding to the pain.

Once all the tests are completed, we will meet with my Dr Dyck again to discuss our treatment plan going forward. I believe we will be taking a one year break, and then compare that to this past year with the IVIg infusions. I do believe I am worse today when compared to a year ago before we started the infusions, but the tests will be definitive. It is hard to know just how much worse I might have been without doing the infusions this past year, so taking a long break and comparing the two outcomes is about the only way to truly evaluate.

Please pray for wisdom to choose a treatment plan, as well as stamina to endure the testing. I will update everyone in a few days when we wrap up our visit. Thank you all for your encouragement and prayers.

~Until Next Time
Shari

We Are Not That Different

In my medical journeys I have met many different people. I can put them into two groups for the purpose of my blog today. There are pessimists and optimists. In other words, there are people that can't see anything beyond their pain and loss of ability to do what they enjoy, and there are others that focus on what they still can do, and the good things in their life. My doctors believe that the people who can focus on the positive have better outcomes than those who don't (or perhaps can't).

In waiting rooms across the area, I have met many people who feel life isn't worth living because of their disability, diagnosis, or pain. I have also met people who seem happy despite their struggles. In most areas of my life, I think I probably fall firmly in the pessimistic camp, but if you have read any of my blog posts you might see that, by the grace of God, I am able to see the positive blessings in my life much more clearly than the struggles.

So what does all this have to do with my post today? Not much, except I wanted to point out the way we tend to group people into categories. We think in terms of black and white, even when we don't admit it. I personally like thinking in black and white terms because it makes sense. It is a neat, orderly way to view the world, but the problem is that the world is messy and gray. It took me years to figure that out. This is what my post is about. I am straying from my normal medical post to broach the subject of *gasp* politics.

I have witnessed an alarming trend the last few years, and I want to start a dialogue. We are more aware of bullying now than perhaps any other time in history, and yet my social media newsfeeds are filled with adults calling each other, groups, political parties, and specific people idiots (and much worse). Sadly and frequently these are the same adults that I see standing against bullying for their children, and fail to see that they are engaging in the same behavior.

Here is the truth: You are NOT an idiot, and neither am I. We are human. We make mistakes, we fail, do things we should not, say dumb things sometimes, and the list goes on and on. We have all been there. We have believed things we later discovered were not true. We jump to conclusions. We pass judgment (frequently without having all the facts). We criticize and name call, instead of truly trying to understand and learn from people who think differently than we do.

I have friends on both sides of the "aisle". Liberal and conservative. Christians, atheists, and other religions. Different races, classes and backgrounds. No matter what each of us believes, the truth is we are all human. Fundamentally the same. Largely comprised of oxygen, carbon, hydrogen, nitrogen, calcium, and phosphorus. (for you Star Trek TNG fans we are "useless bags of mostly water" 😃) When we boil it all down to that, NONE of us should feel superior.

As a nation that once prided itself on standing "united", we are the most divided we have ever been. We have lost the ability to have a civil conversation on many "hot button" issues. We dig our heels in, read things that confirm our own biases, and watch news stations that feed us the spin they know we already agree with. In a lot of ways, social media makes this all easier. "Trolls" are free to roam the internet and say things no one would ever say to someone's face.  It emboldens all of us to some extent. We "like" and "share" with little to no effort, and also with no confirmation of facts. We believe what we believe and are not likely to listen to groups who espouse contrary views.

I only bring this all up today, because yesterday, as I scrolled through social media, I saw posts from one group of friends who were calling certain political people morons. The very next post, from my other group of friends, was calling a different person crazy (which is a word I dislike for many reasons), and I felt disheartened. First, it is hard to hold out hope that our country can be united again. Do you remember the afternoon of September 11, 2001? Do you remember that feeling? Remember that you hugged your neighbor, despite their political or religious leanings? Can you fathom today that a random group of strangers would stop and pray, even if they all believe differently, simply because they had to do something....TOGETHER?

I feel sad that our nation that this era is punctuated with bullying at every age. That we are quick to name call, and spread "news" without really knowing it's source, or the bias of the person reporting it. I am especially downtrodden when I consider my dear brothers and sisters in Christ, fellow Christian believers, who post the same inflammatory, derogatory remarks, despite knowing that God clearly calls us to love our neighbor.

So, here it is. I love YOU. I believe with my whole heart that you and I were both created in the image of a holy and just God, and for that reason alone, you are deserving to be listened too, to be loved. We can love our neighbors (and are in fact called to do so) because He first loved us (1 John 4:19, Mark 12:31).

It is true that life has a lot of gray areas.  I pray that you might forgive me if I have ever said or done anything to imply you were stupid, or less than. I pray too that we might be able to share our beliefs in a non-judgmental way, really listening to each other, even if we still walk away with differing viewpoints.

This whole post was started because of a short clip of a documentary, and an interview of it's maker on WGN this morning. The documentary is called List(E)n. The preview shows the filmmaker bringing two people together over coffee to hear each other out. Two people on the opposite side of important issues, coming together to listen. This is how we stand united. We can believe differently, and still show respect and compassion for each other. Part of what made America what it is, is the ability to freely choose our religious and political views without fear of repercussions. Sadly, I fear this is no longer the case.

We are not that different. We are quirky and can be wrong sometimes (maybe even often?). We can be united in the fact that we have more in common than we do differences, or we can continue to see only the differences that divide. We can be optimistic and move forward together, choosing to focus on our similarities, or we can continue to bully everyone who doesn't believe the same as we do. Then maybe we can change our nation's motto to "divided we now stand". Can we start the conversation here? Tell me, what do you think?

Until Next Time~
Shari

Who'd A Thunk it?

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

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

A team of 3 surgeons was assembled: 

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

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

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

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

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

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

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

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

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

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

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

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

Until Next Time~

Shari

The Heavy Weight of Scales

Once upon a time, I lived an active lifestyle: biking, running, walking, hiking, rock climbing, swimming, kayaking, the list goes on and on. I did all of our yard work, and helped shovel snow. I did all the shopping, and errands, and was always on the move. I have always tried to eat fairly healthy, not really denying myself any guilty pleasures, but always being careful not to over do it. Both of my parents were overweight all of their adult life, and genetically I am very similar. I have always had to be aware of what I eat, how much I eat, and how many calories I burn, and even then, I could still gain a couple pounds very easily.

The older we get, our metabolisms naturally slow, and weight loss does becomes more difficult. Genetics play a huge role in metabolism, and it is difficult (but not impossible) to overcome that genetic predisposition.

As you know, I am not as active as I once was. I have trouble walking even short distances. Chronic pain and arthritis keep me from doing much with my upper body also, so I do a lot more sitting than I once did. I have read many studies showing that "sitting is the new smoking", and if that is the case, I have a 3 pack a day habit!

Lack of real exercise (combined with my genetics and poor food choices) are causing me some issues.....again. I have been overweight before following my surgery in 2009. I held steady at 122 lbs for a few years, following a strict paleo diet. It was hard, very hard at times, especially when we were away from home, but I can be very disciplined when I put my mind to it!

Last year, my cardiologist told me to start adding some whole grains to my diet for heart health. I had already been slipping a little, because eating a strict paleo diet requires fresh ingredients, lots of washing and chopping and cooking. I was feeling worse, living with daily intense pain. I was having more difficulties doing my shopping, and stopped going to so many stores for fresh foods every few days. Cooking complicated recipes became too much on some days. The changes were small at first, and I rationalized that "it wouldn't hurt just this once" to eat something unhealthy. It wasn't long before "adding whole grains to my diet" just became "let's have a bowl of ice cream after dinner".

I convinced myself that I would work harder tomorrow. I rationalized that I was still eating more healthy food than bad, and it wasn't necessary to deprive myself of yummy treats. Now, 30 lbs later, I am nearing that weight I was back in 2012 when I started the paleo journey. My blood pressure is elevated again, and I am on medication for that. My blood sugar is out of whack frequently, and I am having digestive troubles again.

Anyone who has struggled with food, understands the mental games we play with ourselves. We promise ourselves it will be "just a little bit" or "just this once". The diet will start (over again) on Monday. A few pounds heavier, and we think we will cut back for a few days, or increase activity, and the weight will leave again....but we keep on doing the things we hate and having "just a little bit more." I have gained 30 lbs. The scale doesn't lie.

We play similar mental games to convince ourselves we are "good people." Sure, we have done some bad things (not too bad), said something we shouldn't have (not as bad as what other people say though), or thought things that aren't kind (but didn't actually act upon them). We add up all our good deeds on one side of the scale, and hope it outweighs the pile of bad things on the other side. The trouble is, that the scale doesn't lie, even if we try to convince ourselves.

The truth is that every thought, word, and deed is tainted with sin. The scale shows the truth, and there is no hiding from it when we step on. Hiding my head in the sand, or rationalizing does not change the fact: I am gaining too much weight, and it is not healthy. I am also a sinner, whose sins far outweigh the "good deeds" I have tried to do. Thankfully, Christ has come to take the weight of our sins upon Himself, for all who believe and repent. So, when God weighs our deeds, He will only see Jesus Christ, and His works where ours should be.

He is also here to offer grace, wisdom, and peace to me as I struggle to find a way to live as healthy as I can. Diet and exercise advice are all over the map! Having a disability makes exercising much more difficult, and I am still trying to find activities I can safely do without falling, or causing myself too much pain. I am trying to take one day at a time, trying to dig deep and find the discipline to eat right again, but I am also trying to extend grace to myself. I am so thankful to know that in all of my failings, Christ's forgiveness and mercy are never beyond reach.

Until Next Time~
Shari

Next To Last

I like making lists. Actually, I love making lists! Even better than making a list is crossing things off the list as I finish doing them. Somehow I feel a sense of achievement when each list has been completed.

Lists give me a sense of purpose. I have a list for just about everything, and it allows me to schedule my time each day. Sadly, sometimes I make a list just to feel like I have something worth doing. Without my to-do lists, I would waste more time just trying to figure out what to do, and end up doing nothing! Give me lists, or give me death! haha

I have been counting down the days until I would finish my IVIg infusions. While I have not had a list per se, I have had an appointment calendar for the past 11 months. Tomorrow is my next to last infusion. I have the last one in September, and just like that, one year of treatment will be completed. Then we will return to Mayo at the end of October for more testing.

The trouble I have with lists is my tendency to focus on the "doing" of each item. I almost go through life with blinders on, only having eyes to see the next task to complete. I don't stop to think about the process so much, as just getting it done.

My mind runs through the list day and night..... first this, then that, and on the the next. It updates in real time as I get things done. Some days I am thankful my mind works like this. It helps me get out of bed on the most difficult days to fulfill the duties that are on my mental check list. It can also be a very bad thing, however. I have difficulty remembering that the people and experiences in my life are more important than the next item on my to-do list.

On lists like my count down to my last infusion, there comes almost a disappointment when I cross off the last date. Instead of being done with it, I quickly realize the list is never ending. I may have finished the IVIg infusions, but there are still a long list of doctor appointments and testing to come, and maybe even more medications and treatments. I may have cleaned all the areas in the house, bought all the items on the grocery list, or got the yard work done, but by the time I cross that last item off the list, there is a whole new list full of things to do. Another shopping trip, more dirt to clean, more weeds to pull, and my sense of accomplishment is short lived.

The older I get, the more I realize I need to set aside those lists sometimes, and just enjoy the moment. I want to focus on the person I am with, or enjoy the place I am at, instead of thinking about what I need to get done. I am sure I will never be completely without a checklist, since this is the way my mind works, but I do hope God continues to grow me in this area. I need to be reminded that life is not just one long to-do list. Life is meant to be enjoyed! I need to set the paper and pencil down, and remember to lift my eyes and see the blessings all around me.

I have also been convicted lately that my need to complete my list of tasks, many times borders on a mentality that I am earning some kind of reward for my works. This is not true, however, as the Bible is very clear that Jesus did all the work. When He cried out "It is finished" on the cross, that let us know that our performance does nothing to earn salvation. I can cross off as many things on a list as I want, but ultimately none of that matters. What does matter is that Christ came to perfectly fulfill God's law, His list of commandments, and cross them off once for all. He did it all.

I am really not sure how many of you like having lists, or if your minds work in the sequential way mine does, but I really hope every one of you realizes that God alone is the One who completes the work, and frees us to enjoy Him forever. Take a moment today, look up and see all wonderful things that He has given us, especially His Son!

Until Next Time~
Shari

Don't Spill the Beans

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

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

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

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

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

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

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

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

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

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

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

Until Next Time~
Shari