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

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

Opening A Can of Worms

I have hesitated writing about this particular subject, but now that I am a couple years out from the event, and with my current observations, I decided it was time. An alternative title might be "Grace and Education" since that is my hope....to educate, but also to extend grace to myself and others as we learn.

I have frequently pointed out issues to my friends that I have experienced as my disability has progressed. One example would be my disdain of the step-on garbage cans in handicapped bathrooms. HOW is someone in a wheelchair (or with no balance, no legs, or whatever) supposed to step on the foot pedal and open the garbage can to toss out the paper towels??? There are dozens of things like this that I have figured out as I go. I put these items in the category of "you don't know until you know". Nobody has a reason to think through all the scenarios that could arise, nor would we be able to think of ALL the possible differences, before we plan, design, or implement an idea. But, for the one person for whom the problem exists, it is a trouble spot. I run into these dilemmas many times a day.

I have tried to remember to extend grace to others, because I do know people want to help. People have generally responded well when I point out problem areas (although most of them don't change when I visit the location again). I am not a dogmatic disability activist, but I would like to lovingly help others to think through things they don't know until they know.

One of the things I have noticed as my disability has become more visible, is the look of pity that I get. I am sure most people don't even know they are doing it, but it is obvious when you're on the receiving end. Recently, I have ventured out alone to some stores, now that I have a van and am a little more independent. Times like these are when I notice the pity look the most. People rush over to hold doors, clear aisles, and the like, all while their face (and sometimes even their mouths) say "awww, poor thing." I am stubbornly independent, but I am also in pain, and starting to have trouble with my arm and hand strength so, in many ways, I am just thankful someone opened the door, or cleared the path, so I didn't have to struggle so much. However, there are many (perhaps even the majority) of people with a disability who are strong, capable, and independent. We do not need or want your pity, even when we could use your help. If I can turn this post into a learning experience, then the first lesson is that you should ask someone if they would like help. You wouldn't rush over to a able-bodied person, and grab the door out of their hand to open it the rest of the way, so don't do it to a person with a disability.

Basically, just treat all people the same. Easy peasy! Okay, not really. Everything we do is tainted by sin. Even our best efforts to help others are mixed with wrong motives. Many times I get the "pity look" as someone opens the door for me, and it is quickly followed by this look (or sometimes an explanation to a child) that says "I am so awesome for helping the poor, crippled woman." I try not to be oversensitive, or read things into a situation that aren't there. The truth is my response is tainted by that same sin nature. This all reminds me of an article I posted on FB a few years ago about "volun-tourism". We travel to a third world country, hug some orphans, hand out water and candy, build a home, and go on safari. It was pointing out our tendency to use a missions trip as a photo op. We go back home a week later with great photos and feeling good about ourselves for "helping those poor people". I have done this too, but we quickly go right back to our American life of excess, and the other people we just thought we "helped" have not had any actual change in circumstances.

(More useful tips and disability etiquette links are listed below. In addition, I added some info about the trend in volun-tourism, since they explain the issue much better than I do. Please take a few minutes and browse some of the highlights!)

This segue brings me to the story I haven't talked about. A few years ago, my husband and I attended a camp aimed at families who have a member with special needs. In a lot of ways, we probably went there with the volun-tourism mentality. We were going to go serve the families struggling with the pressures of dealing with special needs. We learned a lot about disability etiquette there for the first time. As a person with a disability, I was overwhelmed seeing families embraced, loved, and served by many volunteers. I wrote about my experience, and my growing pains, as God revealed ugly truths in my own heart. It was painful, and wonderful, all at the same time. This was also a week of learning to extend grace. If you know me, you know my middle name is Organization. Dealing with a dis-ability is not as hard for me as dealing with dis-organization. That old post shows how I struggled to find a spot to serve, or to help without making it about me. By the end of that week, I felt I had found my niche, and for the first time felt that I could be useful despite my disability. And then....

A year later we signed up to serve again, but we would end up never going back. Turns out that even an organization built on serving families with disability has trouble doing the one thing they talk about a lot: co-laboring. They are absolutely wonderful at making families feel loved and welcomed. Many of these families think this camp is the best week of the year, and we need more places like this! The trouble is that there is still a disconnect when it comes to the able-bodied people helping dis-abled people (or differently-abled, if you prefer).

Like any week of service or missions, we show up expecting to help and bless the less fortunate. Even if we don't want to think or talk about it, it shows in our faces, actions, words. When we went to sign back up to serve again at this camp, there were issues, many that I will not discuss publicly, but the one I will talk about is the fact that they asked me to return as a camper, not a volunteer. It was brought up that we could come as a family and be served, and relax for the week.

While this was super heartbreaking for me, because it was the one place I actually felt useful, but I don't bring this story up for that reason. I want to talk more about our tendency as humans to help others to feel good about ourselves, instead of helping people who need/want our help. It is not wrong to open a door for someone, but honestly, do you do that for everyone, or deep down do you think the person with a disability needs you to do it? Basically, I am asking you to truthfully evaluate if you treat people the same. This requires some soul searching and brutal honesty with yourself. I would venture to say that we all do this very thing. Whether it is physical, or intellectual, there are areas in our lives that we feel superior, even if that is not a thing we would say to someone. We have those moments of thinking we could do something faster, or figure something out better, than someone else.

What it boils down to actually, is the fact that we all need to be more aware of our motives, our sin, and remember that we all have strengths and weaknesses, but none of us wants someone else rushing over to "fix" our problem. We can come together, find a place where we can work shoulder to shoulder, utilizing each other's God-given strengths, and do so to the glory of God.

Missions and service projects are fantastic, and I am not trying to say to not do them. My point is more about really learning to co-labor, whether it is in the disabled community, or a village in Africa. Ask how or what you can do to help, and roll up your sleeves, side-by-side with the others, and work together. I want you to serve, but I mostly want you to understand that a week at a camp may not be the best way. Only you can prayerfully decide how and where to spend your time and gifts, but be intentional and educate yourselves before you do.

I am thinking of the old saying:

Give a man a fish, and you feed him for a day. Teach a man to fish, and you feed him for a lifetime.

In order to truly do that though, you have to be willing to talk and listen. Find the areas in an individual's life where they could use your giftings, and show up. Opening a door for me at Kohl's might be just fine, but maybe what I really need is help with shopping. A meal might be great, but I may have a refrigerator full of food, and a dozen loads of dirty laundry. This type of service and love involves more. More knowledge, more love, more dying to your own interests, and looking more to the interest of others. It is not about feeling good about yourself, but about laying your life down in service to another. This all takes lots of grace, love, and forgiveness. It also takes time to educate yourselves. (Please check out some of the resources listed below)

I will finish with these words from Philippians 2:1-8:

"So if there is any encouragement in Christ, any comfort from love, any participation in the Spirit, any affection and sympathy, complete my joy by being of the same mind, having the same love, being in full accord and of one mind. Do nothing from selfish ambition or conceit, but in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others. Have this mind among yourselves, which is yours in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but emptied himself, by taking the form of a servant, being born in the likeness of men.   And being found in human form, he humbled himself by becoming obedient to the point of death, even death on a cross."

Until Next Time~
Shari


Resources:

Disability-

1. "Interacting With People With Disabilities"
2.  Etiquette and Language Tips
3. "Introduction to Disability Etiquette" 

Volun-tourism-

1. "The Reality of Voluntourism"
2. "The Business of Voluntourism"
3. "As Voluntourism Explodes In Popularity, Who Is It Helping The Most?"

(Please note this links are to outside resources, and all the information/views are not mine, but are provided here to educate you more on this topics.)

Pinball Wizard

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

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

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

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

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

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

Until Next Time~

Shari

Faith at 49

Yesterday was my 49th birthday, but I don't feel a day over 80 though! 😁 I figured I would celebrate with a blog post since it has been a while.

In a lot of ways, my days have been pretty status quo, but there have been some new developments if I think a little harder. I have been continuing on my infusions of IVIg every other week. Besides being bored for 5 hours in the infusion center, there isn't much to report here. Thankfully the side effects have been minimal, but I am not convinced it is helping at all.

Subjectively I think I have been getting worse. My legs don't seem to want to follow my brain's commands, and seem to have more trouble walking. For sure the numbness, tingling and weakness in my hands and arms has been progressing. Due to this, I have had more issues navigating in my manual wheelchair, and yet I am using it more and more. We have an appointment on the 10th of June at Shirley Ryan Abilities Lab again to begin the process of getting a power wheelchair. Of course, with a power wheelchair, an accessible van is a necessity. (I should probably do a blog post on the expensive nature of a disability, since I think my husband works to pay for all my needs) I am excited though that the new power chair, and the van will make me more independent. I do miss shopping at an actual store (while online shopping is a blessing when you can't go somewhere, it just isn't the same, especially for clothing!)

About two weeks ago, I had an episode of nerve pain in both legs, that grew so bad that I had to rethink what I thought a 10/10 on the pain scale was (even after 2 kids and 20 kidney stones). This was hands down the worst pain I have ever felt, and it landed me in the ER. Thank God for strong drugs! They basically knocked me out for a couple hours, and I woke up feeling better. I was very worried that the pain would come back, or would be here to stay, and knew that there was no way I could handle that.

Even as that thought entered my mind, I wondered "what exactly do I mean?" Many of you have heard a story of someone who has gone through something horrible, or seemingly impossible, and thought "I could never do that!" But what happens when that same terrible accident or illness strikes you? In that moment, you might think along the same lines. I know I did lying in the ER bed: I can't do this, I cannot live in this much pain.  I understand feeling that way, but in reality we have no choice. It is not as simple as rewinding the clock to a time before the accident happened, or telling the doctor you decided not have the disease he just diagnosed you with.

It is in these moments that the rubber meets the road. Does all the talk about my faith mean anything? Do I really believe what I preach? My answer is a resounding YES! However, that does not mean that I never struggle or doubt. The pain is very real. There are many days I feel the reality of the fact that I am not strong enough to handle all of this, but it is also in those moments that God reminds me of His strength.

I know I have said this before, but the saying "God never gives you more than you can handle" is not in the Bible. What is true is that God never gives you more than HE can handle. He grows us in our faith, strengthens us, and allows us to persevere. It is only my lack of trust, my lack of faith, that in the midst of excruciating pain, I cry out to God and say "I can't!" Those words should be immediately be followed by, "but I know You can!"

This is not easy. Life is not easy (or even fair, for that matter), but every day is a blessing. Every day is a choice to dwell on all the things we can't do, or can't handle, or to dwell on the goodness and faithfulness of God. We thank Him, the giver and sustainer of life, for every second of every day that we are given to enjoy His creation, our families, our jobs, our friends or pets, or anything and everything you have in your life that you get to enjoy during our brief time here under the sun. Every breath is a blessing, even if it is a painful one. Be encouraged today, that even though you can't, He can!

Until Next Time~
Shari

Prayer requests:

• Please continue to pray for clear test results in September when we return to Mayo Clinic, so we can make decisions regarding my treatment going forward. 
• My liver enzymes have been elevated for the past couple months, please pray they return to normal.
• Pray for me to trust in God to provide all we need, whether it is about the cost of the van and everything I need, or the pain I am experiencing. I worry (more than I should), but know I should trust God, and am thankful He is teaching me to trust Him more. He has always provided, and I don't expect Him to stop now. I am thankful that Chad doesn't stress over this the way I do! We make a good team <3 
• Pray for the grant I applied for to help (hopefully) with some of the conversion costs of the van. That organization has my case on their agenda for their June meeting.

Ignoring The Warning Signs

Sometimes you know that you have a problem. Maybe you are too busy to deal with it. You might not want to face the problem (denial- it ain't just a river in Egypt!). You could even be dealing with another bigger problem, and choose to ignore the warning signs. I am an endless supply of prayer requests, and am always dealing with multiple issues. Sometimes, it feels like the more I pray for relief, the more new things pop up!

I had been feeling the stomach discomfort, and knew I was taking more NSAIDS recently to help with pain. I have had an ulcer in the past (twice actually) from steroids and ibuprofen usage, so I know what the signs are. I was aware enough that there was a problem, that I started taking over the counter stomach meds, but honestly, I didn't want to think about one more problem.....so I didn't. Sometimes, you ignore the warning signs until you are doubled over in pain after every meal, and it refuses to be ignored any longer.

Doctors now have me on a stronger, prescription medication for a gastric ulcer, and I am adjusting my diet to help also. I was left with no other option, than to accept the fact that I could no longer ignore the symptoms. Choosing to overlook little "problems" can often be life-threatening. An ulcer, if ignored long term, can grow larger until it literally eats a whole in your stomach, and you could die. A medical condition that is very common, and usually benign, over time becomes a very serious issue.

Our lives are all like this. We ignore signs, especially when the problem seems small, and easy to overlook. We convince ourselves it isn't a big deal, or we will deal with it at a more convenient time. Sin is the same way. We can let ourselves off the hook regarding our thoughts, words or deeds. We make excuses or convince ourselves it won't happen again. Eventually, that unchecked sin can becoming life-threatening. The Bible tells us that all of us sin, but did you know that your conscious can become so dull, that you no longer feel the gnawing pain of your sin? Your heart becomes callous, with repeated sin, like hands that are submitted to daily hard work. Eventually it fails to cause us pain any longer, and therefore we fail to take notice and rectify the problem.

Some of you might be tired of my constant reminders of our sin. Our need to repent, and turn to Christ alone for salvation, but what is more loving? Should we let our loved ones just fly passed all the clear warning signs, when we know the bridge is out ahead, and they are heading for disaster? Of course not! If we could help a friend or family member to accept and deal with a difficult issue, before it becomes life-threatening, we most certainly would! God's word is clear that sin will result in death. Not just the physical death that we all with face, but spiritual death- left dead in our sins, being eternally separated from God in hell, where there is no longer any hope for salvation.

Don't ignore that gnawing pain in your gut, my friends. It was put there to awaken you from your spiritual slumber, and cause you to see the deadly consequences of your sin. Go straight the Thy Great Physician, God Himself, in faith, and repent today so your healing may be complete. 💜

Until Next Time~
Shari

Y'all Come Back Now, Ya Hear?

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

The doctor said we had many options including:

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

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

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

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

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

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

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

Until Next Time~
Shari

Why Me?

Several people over the years have said that I must question why all of this is happening to me. Why I have to suffer. Why I can't seem to catch a break. Why me??

My response has almost always been: "Why not me?"

Honestly, this question has still come to my mind many times. I may not have asked "why me?" in the pity party sense. Instead, I am in awe as I ponder the fate that my sin truly deserves, and yet know I received grace instead. The mere fact that I might enjoy anything in this life, moreover inherit eternal life through Jesus Christ, leaves me speechless.

The lyrics of the hymn How Sweet and Awesome Is This Place  capture this wonder:

...Each of us cry, with thankful tongues,

"Lord, why was I a guest?

"Why was I made to hear Thy voice,

And enter while there's room,

When thousands make a wretched choice, 

And rather starve than come?"

When you let that sink in, you can't help but to ask "Why me?"

I am still doing a study with the book by Jared C Wilson that I mentioned in this post. The chapter this week brought up a story of the author's friend (Richard) who found out he was dying of cancer. During that period, Richard wrote these words in an email to Pastor Wilson:

"I really feel so blessed that God would actually use me at all to attempt to bring Him the glory He so deserves. Why me, brother?"

Wow. I read through that a couple of times. What a marvelous and humble response from someone facing death. I won't presume to know God's plan, but this story hit me like a ton of bricks. My prayers have consistently been that God would strengthen me to suffer well. That I might suffer faithfully in a manner that would bring Him glory in the midst of these trials. So, when I read this story of a dying man questioning why God would graciously choose him to be a part of the bigger picture, it touched me.

The Westminster Shorter Catechism asks:
Q. What is the chief end of man?
A. Man's chief end is to glorify God, and enjoy Him forever.

I want God to be glorified. I know that through every twist and turn in my life, God has been growing me. I am not who I once was. I am also not who I will be. Sanctification is a process, and in some ways I have come a long way, and in other ways I have barely moved.

Life is not easy. Some days lately it seems overwhelming and impossible, in fact. Through all of these trials, God has revealed things in my own heart that are not pleasant. He has chastened and corrected me. He has convicted me of my need to love and serve others. He has humbled me, painfully so, at times. I know more about myself than I used too. I am learning a lot about others as well. God has deepened my faith and my trust in Him.

This week, I find myself echoing that book chapter, "Lord, why me? Why would you use me at all to attempt to bring yourself the glory that you alone deserve?"

As I ponder these things, my heart sings praises to Him. I feel thankful to know that He can (and will) be glorified in the midst of my suffering. He does strengthen and sustain me. He hears my cries, and He replies:

"Why not you?"

I pray you all might be guests with thankful tongues, and not make a wretched choice. May God be glorified through us all!

Until Next Time~

Shari

Why Zebras?

(Be sure to read to the end to get the latest on my next trip to Mayo, and prayer requests)

Zebras have become a symbol for rare, unknown, and difficult to diagnose diseases. Why zebras, you may ask? That is a good question! I first heard this line many years ago on an episode of House, M.D.:

When you hear hoofbeats, think of horses not zebras.

The idea being that generally, in medicine, if you go to the doctor with a list of symptoms, the doctor should consider the most common reasons for the symptoms first, before moving on to more obscure options. Wikipedia explains the origins of the saying here.

February 28th is Rare Diseases Day. The National Organization for Rare Diseases (NORD) wants to raise awareness of the reality that 1 in 10 people suffer from a rare disease. There are currently over 7,000 known rare diseases, and many that have yet to be named/discovered.

If you aren't familiar with my journey, I suggest starting here. This was our first trip to Mayo, and when we finally got a definitive diagnosis.

I have CIDP (Chronic Inflammatory Demyelinating Polyradiculopathy). There are estimated to be about 5-7 cases of CIDP diagnosed per 100,000 patients. It has been a long, difficult, and painful journey. It is important to raise awareness, because rare diseases don't get the funding for studies or drug trials like well known illnesses do, which means there is less chance for a cure.

On March 13th, I will be loading up the car and heading back to Mayo Clinic.

I started doing weekly IVIg infusions on October 26th, 2018, and have 2 more infusions before I return to Mayo for repeat testing. Please pray for clear results. So far, I have not really noticed any difference, although I have had a lot of headaches, high blood pressure, and flu like symptoms from side effects. I don't want to continue the treatment if the testing can't conclusively verify it is working.

I will keep everyone posted of my travels and my results. In the meantime, I will be wearing my zebras stripes today to #showyourrare

Until Next Time~
Shari

Is There Something In My Teeth?

Have you ever come home after a day out, and realized you had food in your teeth (or maybe it was toilet paper stuck to your shoe, a spot on your shirt, or something in your nose)?

You immediately start to wonder:

How long it has been there? 

Who saw it? 

Why didn't anyone tell me!?!?! 

You may feel embarrassed or ashamed. It might make you more vigilant on your next outing, so you double check to be sure it doesn't happen again.

This has happened to me. More than once actually. We confidently walk around a party, meet new people, and enjoy the company of old friends, all the while unaware of the leftover meal protruding from our smile. It is blatantly obvious to everyone else around us, yet we remain blissfully ignorant. People might turn away from us, or stop talking to us because they are uncomfortable, offended or grossed out. Some may talk about us to the other party goers. A few may bravely whisper in our ear, and help us avoid further embarrassment.

Once we become aware of the food in our teeth, we would likely hurry to the nearest bathroom, and look into a mirror to examine our teeth.

I was thinking about how this situation is similar to us recognizing our own sin. Or perhaps, our failure to recognize our own sin. We all have sins that we seem unable (unwilling) to see, and yet are on display for all the world to notice. We fail to recognize these sins perhaps because we have hardened our hearts to them, or have excused them as personality traits, or simply bad habits.

Hopefully, we all have friends that would quietly confront the issue with love, rather than walk away and leave us in our current condition. One that would love us enough to overcome their fear of confrontation, talk to us privately, and point us back to Christ in repentance. Matthew 18:15 tells us to do just that.

God's moral laws, the Ten Commandments, act like a mirror for each of us. We look into that mirror, seeing the perfection and holiness of Christ reflected back to us. The mirror shows us our sinfulness; just as the bathroom mirror exposes the specks of food in our teeth.

James 1:23-25 warns us not to just glance into the mirror, then turn, walk away, and promptly forget what we look like. In the same way we would not leave the food in our teeth, and just walk back out of the restroom, and continue to mingle. We need to deal with the problem.

Unlike getting parsley out of our incisors, we cannot simply get all the sin out of our lives. The mirror simply reveals the truth that we all fall far short of God's holy standards. We cannot just "fix" ourselves. However, our good deeds don't earn favor or status in God's kingdom, the way perhaps, a clean smile earns friends at a party.

This quote I just read in the book, The Imperfect Disciple by Jared Wilson, seems to explain this concept fairly well:

"You are more sinful than you realize, but you are also more loved than you know." 

We are hopelessly sinful. The bad news is that we can never be good enough to get to heaven, or earn God's love. The good news is that God so loved the world that He sent his son to die for our sins. God offers us that free gift of grace, through faith in Christ, to all who believe and repent of their sins.

Jesus took our place. He paid the penalty (took our punishment). When we trust in Him alone for our salvation, God sees Christ's perfect reflection when He looks at us, instead of our sinfulness. This is why it is called the "good news". That is what is so amazing about grace, that it is none of us, and all Jesus Christ. (John 3:16; Galatians 3:13-15, 24-26; Romans 5:8, 3:23-25)

Hopefully you have checked the mirror, and don't have anything in your teeth! More importantly, I pray we all look into God's Word, compare ourselves to that standard, and find that we are all lacking. I pray that drives you to Christ, seeking His forgiveness, and placing your trust in him alone.

Until Next Time~
Shari

P.S. The Imperfect Disciple: Grace for People Who Can't Get Their Act Together by Jared C. Wilson, is a wonderful book full of grace for those of us who struggle to see past our sins, and a beautiful reminder of Christ's finished work.

What is Truth?

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

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

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

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

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

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

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

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

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

Until Next Time~
Shari

Dark Circles

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

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

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

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

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

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

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

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

perplexed, but not driven to despair; 

persecuted, but not forsaken; 

struck down, but not destroyed"

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

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

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

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

Until Next Time~

Shari