What Kind of Friend Will I Be?

After a recent conversation with a dear friend of mine, I was left contemplating friendship. It has been a topic on my mind often the last couple of years, as I wondered what constitutes a good friend. The older I get, the more that definition has shifted for me. Several things have altered my thinking over the years. For starters, being married changed how, when, and why I formed and maintained friendships. It also changed the substance of them, since my husband really is my “best friend”.

As a small child, a friend was simply someone to play with. During grade school, friends were someone to talk to, to sit by in class, to have sleepovers with, and to pass notes to in class. By junior and senior high, the circle of close friends became a smaller, tight-knit group. They knew your secrets, your struggles, your crushes, and your likes and dislikes. You trusted them, sometimes with disastrous results.

I was pregnant by my 20th birthday. Being a wife and mother at such a young age probably shifted things for me quicker than most, but friends became a sounding board for life's struggles and demands. My friends were the people I spent hours a week talking to on the phone (before cell phones). We laughed and cried together. We shared special moments and hurtful situations.

At the age of 28, my husband and I became Christians at the same time my health struggles started. Friends became a source of encouragement on top of the above listed things, but over the past 20 years, as I have grown older and learned more about scripture, my definition of friendship has shifted yet again.

Let's take a look at some things the Bible says about friendship:

• "As God's chosen people.....forgive one another.....as the Lord forgave you." (Col 3:12-14)
• Jesus commands: "Love each other as I have loved you." (John 15:12-15)
• "As iron sharpens iron, so one person sharpens another." (Proverbs 27:17)
• A friend "loves at all times." (Proverbs 17:17)
• Only wound us in ways that are trustworthy. (i.e., tough love; Proverbs 27:6)
• Are more loyal than family at times (Proverbs 18:24)
• Provide mutual edification (Proverbs 27:17)
• Impart wisdom to one another (Proverbs 13:20)
• Friends may even sacrifice themselves for us (John 15:13)
• We should be compassionate, kind, humble, meek, patient, forgiving, living at peace with one another, loving, and thankful (Colossians 3:13-15)
• Friends also teach one another and worship God together (Colossians 3:16).

John 15:12-15 describes Jesus, the truest friend of all, "This is my commandment, that you love one another as I have loved you. Greater love has no one than this, that someone lay down his life for his friends. You are my friends if you do what I command you. No longer do I call you servants, for the servant does not know what his master is doing; but I have called you friends, for all that I have heard from my Father I have made known to you."

Friends love one another with sacrificial love. Friends know each other well and promote one another's welfare. Does this describe the type of friend I was or had when I was younger? No.

Frequently friendships were filled with petty arguments, envy, strife, fighting, selfishness, and gossip. Many of my friendships were "one-sided" where either I or the other person gave more and tried harder to keep the relationship going, not out of love and service but from a place of longing to be accepted.

Friendship has been on my mind the last couple of years for a few reasons. First, as my health gets worse and I struggle more to get out and do things, I have thought about how to nurture friendships while still taking care of myself. It seems more difficult to maintain that closeness when I have to cancel so many plans. Secondly, when we had to switch churches a couple of years ago, it was difficult to get plugged in at the new church. This is hampered again by health issues. I cannot be there every time the doors are open like we once were. I am no longer the "do-er" that signs up to serve, clean, help, or whatever all the time. Lastly, many people have talked to me about feeling disconnected at their churches, or not having friends and community at church. I began to ponder how we can all assemble at church week after week, and yet feel lonely. I questioned what I wanted out of a friendship. What did I expect from my friends? Did I give others the same things I felt that I wanted? How can we stop being lonely in a crowd of fellow believers?


Well, I am sorry to report that I don't have all the answers. I have been thinking about all of this for the last couple of years though, and thought I'd share what has been rattling around in my brain lately. I admit that not everyone struggles in the same way I do, so perhaps not all of this will ring true for you. Younger me craved acceptance and looked at friends as someone to please so that they would love me. Friendship was a form of idolatry, something I deeply wanted, expecting it to fill a dark whole in my life. As years passed and I slowly learned that friends let you down, can't be trusted with secrets, and turn against you in a heartbeat, I started to change my views. I convinced myself I didn't need people, and I selfishly started looking for friends to meet my needs, giving little in return.

As a young Christian, a couple of close, trustworthy friends emerged, but even then our conversations with often ungodly. Complaining and gossiping about people or church, focusing on the ways our husbands were failing, or whining about our children's misdeeds. Slowly conviction crept into my heart as I studied God's word more. Truly Proverbs 10:19 "When words are many, transgression is not lacking, but whoever restrains his lips is wise" was very true. Maybe spending hours on the phone with friends was unwise? Thus began the another shift for me.

More growth in this area and I struggled to find friends who would be an encouragement, find joy in God's Word together, call me out when I sinned, and who fit the description of the things on the list above. That is when God started to speak to my heart: I need to be that person! I should be looking for those attributes in myself, not others. I was still setting my expectations too high, and expecting others to meet my needs. I think that missed the whole point of friendship. Friendship starts with being that loyal friend that scripture speaks of. Do I encourage others? Have I lovingly called someone out on their sins or challenged them? Do I pray for them and with them? How can I expect others to be what I myself fail to be? Do I look to a friend to provide something that is fulfilled in Jesus, who loves perfectly, is faithful, and knows our needs?

I am no Bible scholar, but from what I know about scripture, it doesn't tell us to choose friends that will meet our needs, or be fun to hang out with. Friendship is not about us. It isn't about getting what we want or need. Friendship should flow out of the love we have for God into the lives of others. Our Christian walk is one of self-denial, love for others, and service. As popular culture likes to say "be the change you want to see." Friendship isn't just a choice we make consciously, as if we have the power in ourselves to love others, but really because God first loved us, His Spirit and love compel us to love others. God is love (1 John 4:7), and what better foundation to build a friendship upon than our unity in Christ!

My prayer for you and me as that God would keep working in our hearts to make us a friend like Jesus, one willing to lay down our lives for our friends. I think you will find as you start become this kind of friend to others, you will look up one day and realize you have a community of true friends around you, and these relationships will be healthy, godly and bring glory to our Lord!

Merry Christmas to you all! May we all be better friends in 2020!

~Until Next Time
Shari

Didn't See That Coming (or Hear It)

I spent several hours in Chicago yesterday at the Chicago Dizziness & Hearing Center. Dr Hain has been my doctor since 2008, when I first went to him with ringing in my ears and some mild hearing loss. I last went to him in 2013, and wrote about that too.

For newer readers of my blog, you may not realize that I am losing my hearing. I was diagnosed with autoimmune inner ear disease in 2008. I also have tinnitus (a constant, loud symphony of buzzing, humming and some indescribable sounds). Lately, I have had some dizzy spells so violent that I can't remain upright. I figured it was time to touch base with the doctor again. I have been focusing on the more pressing health issues, so this issue tends to take a backseat. Plus, I already know he recommended hearing aids last time, but they aren't cheap, and our insurance coverage for them is subpar.

I had 4 tests done, and then met with the doctor to discuss the results. As expected, my hearing has gotten worse. They are pushing a little harder for me to at least try some hearing aids. Hearing aids will definitely help me hear better, and can help with tuning out the tinnitus too. We will likely get those next year when we are able, when we replenish our medical fund. (I am one expensive disabled wife!)

The unexpected part of my trip yesterday was that one of the test results indicates that I have a small hole in one of the tiny bones in my inner ear. This is called "Superior Semicircular Canal Dehiscence" (SSCD), and of course, it is a rare disease. The test was abnormal enough that the doctor didn't feel like we needed a CT scan to confirm, since I have been through enough. Dr Hain explained that when it gets bad enough, surgery will be necessary. It may take 2 years or 10 years, but it will get worse. Surgery involves seeing a specialist at John Hopkins Medical Center, and drilling into my skull, so let's hope that it takes many years to get that bad. He says I will know it is time for the surgery when I can hear my eyes move back and forth, and it will sound so loud it will drive me crazy (something else to look forward to).

The hole is in one of the semicircular ducts. Both ears are affected.

I have such a great group of prayer warriors who are faithfully praying for me, so I wanted to update you, and ask for continued prayers. I have been listening to the MercyMe  song "Even If" on repeat the last few days. You should have a listen! God is able, and I know He can take this all away, but even if He doesn't, my hope is in Christ alone, and it is well with my soul. 💜

~Until Next Time
Shari

...and After

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

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

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

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

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

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

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

Thanks for following along on my journey with me!

~Until Next Time
Shari

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