How He Shaped Me

Years ago I started this blog after my mom died, partly because I had a story to tell. One that I had kept inside so as not to hurt my mother. Even when I did share it, I kind of left out a lot of details. I worried that some day my father would read it, or someone he knew would mention it. I also wanted to be respectful of my sister and brother, and not give specifics of anything that wasn't my first hand experience. If you are reading this post, it means that my father has died. 

I covered a lot of this story in the "Part 1" posted in 2013, so I will try to not just duplicate the whole thing! If you are interested, you can read about my childhood, parents, and how I met Chad: (Part 1 and Part 2). FYI, you're gonna need to refill that coffee mug first! Those two parts are longer than this post is going to be!

Neither my father nor my childhood were ideal. We are an example of how abuse frequently gets passed down from one generation to the next. My dad's mother died when he was just 10 years old. According to my dad, his father was a mean drunk that beat my father, and left him to fend for himself frequently. As a result of my dad's upbringing, he was abusive too. As a young adult, I could not forgive my father for the abuse I suffered. Even more difficult for me was the feeling of abandonment when he left after the divorce.

I was a painfully shy little girl. I hid behind the teacher or my mom instead of speaking. I sat in the front of class, and listened, but didn't talk (all who know me now are probably finding this hard to believe). I got bullied before that was even a term. I was depressed and withdrawn for most of grade school. I did meet with the school psychologist for a year or two after the divorce, but they were not much help. In fact, 20 years later, I requested those records and read through them. I was shocked to see the notes from 1st and 2nd grade, where I talked about the physical, emotional, and sexual abuse in my family, and told them I still saw my father from time to time. NO ONE DID ANYTHING! The 1970s apparently were before the time of mandatory reporting! But I digress....

At some point during junior high, I got tired of being everyone's punching bag. I was angry with my dad for leaving. I had so many bottled up emotions regarding the abuse, and my parent's failed marriage, that were never discussed and had just been pushed down deep.

It was during 7th or 8th grade that something deep within me broke, like a dam bursting forth. All the pain, hurt, and anger boiled over. It created a hardened teen, who was ready to fight (and frequently did fight) over a sideways glance from anyone, anywhere, anytime. I stopped being bullied, because I stopped taking it, and started fighting back. I had a short fuse, and it didn't take long before fellow classmates were afraid of me. I was done being a victim. Done letting anyone else hurt me. I thought I was taking control of my life. Instead I was building walls and not letting anyone in. I built a fortress actually, vowing to never let anyone hurt me. Ever again. (As a side note, when I did this, I pushed everyone else away, and thus proved that I was as unlovable as I thought.  I also confirmed that people cannot be trusted. Self-fulfilling prophecy and self-sabotage at its finest).

I spent the next decade mad at the world. Even after Chad and I met, it was a regular occurrence for him to escort our children out of a store, as I was about to climb over the counter and beat the cashier for messing up my order. Yep, I was a total mess, and it got worse.

In 1993, we had our little girl, and things changed again. My "Part 1" story I mentioned above talks about how I was scared to death that I would become my father; that it was somehow inescapable, and I would abuse my children too. I wanted so badly to parent them well, to not lose my temper, or hit them in anger. I did not want to make critical comments like my mother, or call them names and belittle them like my father. While I never feared that I would sexually abuse my kids, I did protect them from everyone, in an unhealthy and over the top way. If I did anything wrong during this time, it would be that I made them afraid of people. Trust no one was my motto, and I think I passed that on.

As Katherine started to grow, my fears grew too. She was such a loving cuddler, and would not hesitate to crawl into a stranger's lap for a hug. I was scared to death that someone would touch her. I even had trouble letting Chad change her diaper or bathe her. I did not like either of us being alone with her, for fear that someone would even think we were doing anything inappropriate. I was a basket case! The first couple of years of her life brought back memories that had been hidden away for years. I had nightmares, and struggled with depression. It was almost like I was reliving my abuse at the same ages as she started to grow.

During this time, our marriage was in dire straits too. Besides our rocky start, we were still both young, immature, and selfish. Adding kids to the mix increased our stress levels (Imagine that! I actually thought having kids would help our marriage hahahaha) We fought a lot, frequently about the kids. My short temper and mama bear tendencies of knowing best how to care for my kids, left little room for Chad's input without a fight. Unfortunately (or maybe fortunately) Chad doesn't back down either, so some of our fights got out of hand, and we didn't fight fair. Our marriage took a hit, and eventually we split up. During those few months, I was suicidal. My life was spinning out of control. I had blamed my parents for many things, and now blamed Chad too. I had always blamed myself as well, since my personality is such that I feel like an unworthy failure most of the time when I don't do everything perfectly.

In those darkest days we began counseling. Couples' counseling quickly became Shari counseling about the sexual abuse. That counselor (Jim) had the personality we both responded well to. He pulled no punches in confronting us both with our issues. He didn't allow us to make excuses. Jim helped me deal with so much of the garbage in my past. He later said that he was surprised that I never actually killed someone, or did jail time. He knew I was a ticking time bomb, and wouldn't have been surprised if I had snapped, and hurt someone, taking all my rage out on the wrong person.

I realized it wasn't just my father I was angry at, it was my mother too. How could she not protect me? She even let me keep seeing him after the divorce! I was also angry with her for the years of being so critical of me and telling me constantly that my dad never loved me, which really impacted me as a child.

I cannot deny that my father's actions have had a huge impact on my life. He really shaped me, who I was and who I am. For a long time, I thought my fate was sealed, and that I would become my father. If you read through "Part 2" of my story from 2013, you know how I started to become sick shortly after Chad and I had finished counseling and gotten back together. My dad and I had reconnected after high school graduation in 1988. We have had many periods in my life where we have stopped talking and seeing each other for many years, and then reconnected. We stopped talking again during the time when my life was coming apart in 1994. During Chad's and my separation that year, Chad really was the first one to show me unconditional love. I am still not sure how he stuck with me, since I did my best to push him away, but I am so incredibly thankful he did!

In 1998, when we became Christians, I slowly started to think about my dad again, especially since I had just finished 2 years of individual and couple counseling. I longed for our relationship to be different, so much so that in the past, I was willing to do whatever I had to do to "make" him love me. I really had to examine my own heart, my anger, my fear, and my desires. God graciously helped me to heal. Father's Day had always been painful for me. I wrote this FB post in 2015. I learned about the true love of a father, first with Chad's example, and then through my heavenly Father. As I started to understand grace and forgiveness, I knew I had to come to a place of forgiveness for my dad. I struggled with the 5th commandment to "honor your mother and your father." What did it mean to honor them? I knew that God forgives us when we repent and draw near to Him. I knew He requires us to extend that forgiveness to others, but I knew I could not "forget" and wasn't sure if that was required (I would now say we do not need to forget to forgive, by the way).

I did eventually reach out to my father and offer forgiveness in 1999. I had hoped for an admission of guilt regarding the abuse, but the most I got was an acknowledgement he may have been hard on us, and that if he ever touched me or my sister, which he said may have happened, it was something he couldn't remember doing. God did help me to forgive my dad, but I always remembered. My kids were never alone with him, not even long enough for me to use the bathroom. Forgiveness is about leaving the past in the past, but not about pretending it didn't happen. This was difficult because my dad loved to talk about the past and all the mistakes my mother or I had made. I struggled until the very end to shut down the conversation with him as he turned it back to those topics. As God taught me and enabled me to forgive my dad, a wonderful thing happened in my heart! I was finally free of the anger, hate and sadness. God truly restored me!

Sadly, I still struggled with the desire to please my dad, have a good relationship, and not make him mad (he was quick to anger, and hold a grudge, and he let some of his siblings go to the grave without mending fences). On the one hand, intellectually, I knew I did not need that relationship, yet emotionally I still wanted it. Due to this fact, I let him emotionally abuse me until the very end. Many a phone call ended with me in tears, shrunken in a corner weeping, and feeling like that 6-year-old girl again. I stood up for myself with evertyone else except him. I chose to love him, and doing so cost me something, but it also taught me a lot. I am sad he is gone. I am heartbroken that his mental health issues kept him from ever really knowing me (He was a talker, but not a listener). I am sad that he spent his whole life with anger and never knew the love and forgiveness of a Father that I have grown to depend on.

So, yes, my earthly father shaped me, as did my mother, my illness, and many other things I have experienced in my life. Most of the things in my past I would not wish on anyone, and yet I have peace and gratefulness to my heavenly Father. The One that started knitting me together in my mother's womb towards the end of 1969 is still forming me today. I am not who I once was, and not yet who I will be either. All of life's moments, good and bad, are used by God to mold us and teach us. I am beyond thankful for His grace that kept me from becoming my father. The lineage of alcoholism and abuse ended with him. While I was not a perfect parent, I believe my children have seen God's grace and favor at work in our lives.

I do not want to make it sound like it has been easy. The enemy of our souls has been at work reminding me that I am my father's daughter. My inner critic has the loudest voice in my head, but the words of my mother saying "you are just like your father", or my grandmother (who despised my father) actually calling me the "Spawn of Satan", embedded themselves in my brain. To this day, I have to make a choice to take every thought captive, like scripture tells us to do, and believe the truth of God, and not the lies of the devil. I am a work in progress for sure, but thankful for every step forward God enables me to take!

At the very end, my father did tell me that he had prayed a lot that I could forgive him for all he has done to me, and the hurt he caused me. That is as close to a confession I would receive, and I made sure to tell him he should pray and ask for God's forgiveness, which he said he did. If you are reading this, it is not too late for you to repent and ask God for forgiveness. He can restore you and help you to forgive others who have hurt you. If you are reading this, God has graciously provided you with one more day, one more chance to place your faith in Christ, and not die apart from Him, still in your sins.

Many of you know that my mother died on July 24, 2011. She attended church with us for the last few years. She made a profession of faith, was baptized, and in the end, I really saw the grace and peace of God, our Savior, comfort her in her final days.

I am so incredibly thankful, that while I am an orphan now on this earth, God has "...predestined us for adoption to himself as sons through Jesus Christ, according to the purpose of His will." My heavenly Father has all that I need, He comforts me, and he will comfort you as well, if you believe and repent, and come to Him in faith today...before it is too late. I truly am my Father's daughter. Praise be to God! 

Until Next Time~
Shari

P.S. This whole post reminds me of one of my favorite songs, an oldie but goodie! It is from CCM artist Eli, who seems to be a talent that virtually disappeared, but I still go to his CDs when I am belting out tunes in the car or while cleaning! 

Eli "Second Hand Clothing" video. 

Enjoy!

Still A Valley Girl

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

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

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

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

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

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

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

 

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

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

Until Next Time

~Shari

More Than A Year

 The end of 2023 is just a couple of days away, and I realized it has been over a year since I posted anything. When I started the blog in January 2013, I posted every day for a while. Turns out I didn't have as much to say as I originally thought (this will come as a shock for all who know me haha). Over time, I tried to post regularly, as a story would come up that needed telling, and eventually the blog ended up on the back burner.

The good news is that part of the reason I haven't blogged all year is because things have been pretty good. We took a year off from traveling to Mayo Clinic, I started working part time, and we have just enjoyed a year without many challenges. Praise God!

I hope, my dear reader, that as 2023 comes to a close, and 2024 is ushered in, you can join me in looking back over the last several months and recognize God's faithfulness in the mundane, everyday things. May we all start the year off with gratitude for all that God continues to work in our lives. I look forward to a study in the book of Psalms with a friend, and all the rest that God will bring into our lives in 2024. 

Happy New Year!

Until Next Time 

~Shari

Just One Click

 Sometimes it only takes one click to take you back. Most days I don't think about it, but it most definitely impacts my life daily. It shaped who I am, what I do, and how I respond to both people and situations. Just one click on a documentary that was recommended for me got me thinking, and then blogging. Leave No Trace is a documentary about the Boy Scouts and their downfall as stories and documents were brought to light about ten of thousands of boys who were sexually abused in the scouts program and camps. 

In my last post, I talked about being bullied and how that made me an angry teen, but I didn't touch on this other reason for that anger. The specific incident this documentary made me think of happened shortly after my 13th birthday. My mother had always told me stories of my sister being a candy striper at our local hospital, and I really wanted to do it also. I lived about 3 blocks from Mercy Center in Aurora, and walked over to ask questions about it. I learned you had to be 13 to volunteer, and they no longer called them candy stripers. On my 13th birthday, in May 1983, I walked over to Mercy Center again and signed up to be a volunteer. I started off delivering flowers to patients the very next day. I had no friends, so I had a lot of time that summer. Within a few days, I was given more hours and duties. I started working at 6 am each weekday in the admitting office. 

In 1983, the hospital had no computers, so there were piles of paper charts and a huge white board with every bed number in the 5 story building. We had to keep track of each patient coming in and going out. I would get them to complete paperwork, give them a wrist band, assign them a bed, and walk them up to their room. I LOVED this job and must have excelled, because after a couple of weeks, the manager was letting me come in alone on Saturday mornings to check in the rare patient who had a weekend admission. 

In the course of my duties, I had a lot of contact with the nursing station and environmental services to make sure beds were empty and clean. I will spare you the horrid details, but the first week of August that summer, less than 8 weeks from when I started, I was standing in the volunteer coordinator's office being fired. I was sobbing and begging, but she was adamant. As I stood there very upset, weeping and shaking, she explained that a nurse had reported me being in a utility closet with a (30 year old) janitor. She raised her voice to shame me for being young and not understanding that people had jobs to do, and I was an unhelpful distraction. Yes, you may have guessed, I wasn't in that closet looking for supplies. I often wondered how that nurse and supervisor were able to turn a blind eye to something so heinous, but by then, I had already learned how to keep silent and had no self worth.

To be honest, sometimes I wonder if I had a sign on my forehead. I am not joking. I was sexually abused by 5 different adults by the time I was 18. As a teen I was also an easy target for the boys in my age bracket. "Date rape" wasn't a term I heard in the 80's, but I definitely understand what it is and how it happens....at least for me. I was really unable to say "no". I had learned that I didn't have a voice or a choice. I deserved what I got, or at least that is what I thought. I rationalized that if I wouldn't have been there, it wouldn't have happened, so there is no one to blame but myself.

As you might guess, I dealt with depression and anxiety, but I was also angry at the world around me. I really was broken. As broken as a person can be anyways. I had trouble making real friendships and had no sense of "self". My past continues to impact my present, although less than it once did. I still keep people at a distance, have trouble trusting people, and I may never have a truly healthy view of sex, but having a wonderful, patient and understanding husband has absolutely been great medicine!

The two of us dealt with my past when we went to counseling in the mid 1990's, and shortly after that is when we came to Christ. People like to present Christianity as a "cure all". The message that frequently gets communicated either directly or indirectly is, "Trust Jesus and you will be happy and healthy." If you know anything about my life or have read this blog, you will know I am not healthy physically and have struggled with mental health in my life as well, so that clearly isn't a true picture of Christianity.

God's word doesn't promise us health or wealth, at least not the earthly defined type. He does tell us that He is with those who love Him. He comforts us, petitions God the Father on our behalf, gives us His Spirit to guide and strengthen us, and leaves us his Word to give us peace. Christ knows my pain. He shares in our sufferings. He suffered unimaginable pain while hanging on a cross, dying, bearing the weight of my sin. He took my place then, so that I might have life everlasting. On that day, I will know what true health and wealth is. Between now and then, I will keep clinging to my Savior, trusting Him to continue to heal my heart. He is teaching me to love and forgive others as He loves and forgives me. If you haven't trusted Christ, asked Him to forgive you, and placed your faith in him, my friend, please cry out to Him today. He won't take away all the pain instantly, but He will see you through it. 

The early years of my life were marked by trauma, grief and loss. The later years have been marked by grace, healing, and restoration. Praise be to God!


Until Next Time~

Shari

P.S. In case you missed the posts about my childhood and early adulthood.

It Could Have Been Me

 I will start simply by saying this is my personal story, and I am not trying to speak about any specific shooting incidents. I have thought about writing this many times over the last couple of years (every time there is another school shooting in particular).

Things were very different in the 1970's when I was in grade school, or the 80's when I was in junior and senior high school. I have joked many times that I am thankful that social media didn't exist then, because it surely would have documented some of my dangerous, illegal, and stupid activities as a youth. It is not funny, however, to think about how much social media impacts our children's mental health today. Growing up was hard enough before computers. I cannot imagine the pressures the internet brings, but I can tell you my story.

My parents divorced when I was 7 years old. I don't remember much from when my dad lived with us, but have a few unpleasant memories of his harshness and abuse. I have tried to understand how I could have been such a "daddy's little girl" to someone like my father. Maybe I wanted to win him over, assuming things would be better if I just loved him more. Whatever the reason, despite the dysfunctional relationship, I was devastated when he left. My siblings were 17 and 19 at this time, and one was in college and the other in the Navy, so I felt alone. My mother and I were on our own for most of my young life. 

I was always super shy and quiet. The kind of shyness that makes you hide behind a parent and causes you to stare at the ground when a stranger acknowledges you. I was pretty independent at a young age. I walked by myself to and from school with a key on a piece of yarn around my neck (literally a latchkey kid). I am not sure if it was nature, nurture or a combination of both, but I felt responsible for other people, especially my mother. I still have a natural bent towards trying to help others, and feeling bad when I can't fix things, but I also remember lots of incidents of my mother telling me that she would die if I left her. Sometimes she would say I was the only thing keeping her from killing herself, and I bore that burden, as well as my own, for many years, 

In first grade, I saw the school social worker to help me talk about the troubles at home, the divorce, and the lack of my father's involvement in my life. A doctor put me on phenobarbital (a strong barbiturate) for a "nervous stomach" that year. Looking back, I would definitely diagnose myself with depression and anxiety. I was the smallest person in my class for several years, and remained one of the smallest through middle school. Being small and shy, you might imagine how it could be a recipe for being picked on. I was bullied a lot through grade school, and it got worse in middle school, especially as my peers learned I lived in subsidized apartments. 

It is really hard to explain in a few paragraphs, but I was traumatized by our family situation, and the bullying was relentless. I was broken. Besides the school social worker and the barbiturates, there was really no other help. Counseling wasn't really a thing back then (or at least it wasn't offered to me). My mother did her best, but she was also dealing with depression (or not dealing with it would be more accurate). So from a very young age, I was exposed to a dysfunctional home life, then felt the pain of divorce and subsequent abandonment. Finally, the bullying at school added the final ingredient to the recipe that shaped who I was.

I came home and cried almost every day for years. During high school, the crying was accompanied by a constant request that we move somewhere else and start over. I know now that moving would not have fixed the problem, but it sounded like a great idea as an adolescent. I wanted to die, although I never actually told anyone that. I was also a VERY angry person. I was mad at my dad for leaving and for the kids at school who were vicious. I spent many hours planning how I would run my dad over if I ever saw him again. I daydreamed about hurting him like he hurt me. I wanted to be liked, and pushed myself to exhaustion to be "perfect" so the bullying would stop, and I would have friends. With the anger being pushed down, and the constant striving to do better, and yet always falling short, I was a power keg waiting to blow. By high school, I was ready to fight any one, any time, for any reason.

When I finally got counseling in my early 20's, our counselor said he wasn't surprised I hadn't snapped and killed someone in a fit of rage. He wasn't wrong. I would have done anything to make the pain stop; to end the bullying. If social media and round the clock world news would have been available to give me ideas on how to go about taking care of my problem, I very well might have made it on the 6 o-clock news, and not for good reasons. When I hear of another school shooting, I can't help but think "there but by the grace of God go I." I never really wanted to hurt someone else, as much as I wanted others to feel the pain I felt. I wanted the pain I felt to stop. I can clearly see now that hurting myself or others would not "fix" me, but as a child or adolescent, whose mind isn't fully developed, it seems logical in the midst of the deep psychological pain.

Some of you might think you aren't capable of that kind of evil, or would never hurt someone else. Others would say you have never felt pain like I am trying to describe, and so you can't believe you do something that drastic. When I hear people speak of the shooters as "a monster" or "pure evil", I can't help but think defining them as different from ourselves makes us feel better somehow. I can imagine the pain and mental anguish that leads a person to consider doing anything to make it stop. Each case is unique, and I am not speaking of a certain person here, but not everyone who commits a mass shooting is a psychopath. In fact, when I say that it could have been me, I believe we all are capable of hurting other people. I know I was. 

We are all capable of doing things we would call "evil". No one likes to admit it, and many of us might find it impossible to believe. 

Have you ever wished someone would "get what's coming to them?" 

When a reckless driver weaves in and out of traffic, coming dangerously close to your car, do you think he ought to wrap that car around a light pole? 

Have you been glad when someone you dislike goes through something terrible? Would you smile as you say "karma's a bitch"? 

I think if we would be completely honest with ourselves, we would admit that we have all had thoughts like these. Occasionally the groundwork has been laid in such a way, that a person actually follows through with some of those thoughts. 

The Bible is clear that the hearts of men are "deceitful above all things, and desperately sick" (Jeremiah 17:9). Without the grace of God, and the transforming power of the Holy Spirit, I shudder to think about who I would be today. I hope we can all pause, and instead of passing judgement on others, begin to pray for those who are hurting. Reach out to people in our neighborhood and community. Maybe we can all be a little slower to pass judgment and a little more intentional about looking for ways we might help.

May we be faithful in getting to know those around us, loving them, letting them know we are here for them. I wish someone would have been there for me in my youth. I am so thankful that Jesus Christ has changed my heart, saving me from who I could have been, and opened my eyes to the truth. 

Until Next Time~

Shari

P.S.

This may be the first time I have done this, but I wanted to add a couple of things now that I have had a couple of days to think more about this.

1. Not having a gun did not stop me from thinking of ways to use my vehicle, a knife, thinking of ways I could make it look like an accident, etc. Any one with this much hate and pain won't be stopped by lack of a weapon, but also...

2. My personality (I am ISTJ and an enneagram 1w9) is such that law and order make the world make sense to me. That combined with my family life/training made me highly sensitive to "right and wrong". I was eager to do the right thing, be perfect, make people like me, that if I ever would have followed through on my evil thoughts, I think the counselor may have been closer to the truth when he told me that in a fit of blind rage, he thought I would hurt someone. He went on to say that it would likely have been an "innocent bystander who took my parking spot" and not the people whom I actually hated and wanted to hurt. 

3. Many children have difficult/abusive family situations like I did. It most definitely impacts a child, but personality types and teaching they receive all make a difference in the result. A good home life isn't always a recipe for a well-adjusted child, like a bad home life doesn't always result in a bad outcome. it is messy and complicated. Over the years, there were teachers, karate instructors, and police officers in my life that stepped in and really made a difference. Go, be that person to someone else!

I just thought I would clarify some of the how/why of what never ended up happening in my life. I am SO incredibly thankful that I sought help before any of those things happened, or my life would look much different now!

Think Zebras

 February 28 (or February 29 in a leap year) is Rare Disease Day. It began in 2008, and this year more than 100 countries are participating in this day set aside to raise awareness for those diagnosed with a rare disease. In the United States, a disease that affects fewer than 200,000 people is considered a rare disease. There are estimated to be between 7,000 - 10,000 known rare diseases, only a few of which have any available treatment. More than 30 million people in the US, and 300 million worldwide are living with a rare disease.

It costs more than $300 million on average to bring a drug to market. The government helps produce what are called "orphan drugs," which are medications for rare diseases that would not be profitable for companies to make due to limited number of patients who would need them. More research and support are needed, and that is why it is important to raise awareness for rare diseases. 

This year, I thought I'd share a little about my story (again). I can't speak for everyone who is living with a rare disease, but one of the most common things I see in this community is how long it takes to get a diagnosis. The average time for a rare disease patient to receive an accurate diagnosis is more than 7 years! There is a saying in medicine that "when you hear hooves, you should think of horses, not zebras." This is supposed to remind doctors that most often when you have a set of particular symptoms, it is most likely caused by something common (horses) and not dig through medical books for some rare diagnosis (a zebra). They should consider and eliminate the most likely diagnoses first. The zebra is the symbol for Rare Disease Day. We are the exception to that rule.

Rare diseases aren't all that rare when you consider that 1 in 10 Americans is living with a rare diagnosis. Doctors frequently overlook a rare cause for patients' symptoms. I had an experience shared by many in the rare disease community. When my x-rays did not confirm my doctor's theory that I had a herniated disc (which is the most common reason for leg weakness with numbness), he told me that I should see a psychiatrist. When the results weren't what he expected, he blamed my mental health rather than seek other answers. 

Going through years of doctor appointments and health struggles before finding an answer is exhausting. Friends and family that started off helping with things disappear one by one as the months and years pass with no answers. Some people doubt you, and you often start to doubt yourself. For others, life progresses and you can't keep up. It can be isolating and depressing to feel unwell and have doctors dismiss you. You learn quickly to do medical research and become an advocate for yourself, but also have to balance going to a new doctor "too prepared." Doctors who see you walk in with a stack of records and list of previously seen specialists are more likely to see you as a difficult patient. 

Many times, rare disease patients have more than one diagnosis, with overlapping symptoms, and that clouds the picture further. We quickly discover that there is no magic bullet that will fix everything. Most rare diseases do not have a cure, and while symptoms can be managed sometimes, the treatment often comes with side effects and at a hefty expense. Having a rare disease and/or disability is expensive. Travel to specialists, new medications, testing, treatment, and mobility equipment can bankrupt a person. Sadly, if you are lower income, or have no/poor health insurance coverage, you may not even have access to many of the doctors or treatments that might help.

My rare disease is called CIDP (Chronic Inflammatory Demyelinating Polyradiculopathy). It is an autoimmune disease. That means my immune system sees my nerves as something harmful, and mounts a defense, thinking it is protecting me from a foreign invader, but instead it destroys the coating on my nerves. The available treatment options have not helped me, and they consider it to be "treatment resistant" at this point. There really isn't anything else they can do but let the disease run its course, monitor me, and give me medications to treat the symptoms. 

I first had symptoms of CIDP in 2004. I received the wrong diagnosis in 2009, and got the correct diagnosis in 2013, which was confirmed at Mayo in 2018 (which is when we found out the 2009 diagnosis was wrong).  You can read more about that devastating news here and here. This disease causes numbness, weakness, nerve pain and balance issues among other things, and has been slowly taking away my ability to walk.

I won't repeat my whole history here, but if you haven't read the beginning of my story yet, you can do so here. In 1998, I went from being healthy and active to fairly unwell, which also took a while to diagnose. They named it many things before deciding on calling it Undifferentiated Spondyloarthropathy, which is a long way of saying I have an autoimmune arthritis that mostly effects my spine, hips and shoulders, and is of unknown origin. This disease has slowly worn away my spine, causing many herniated discs, bone spurs, loss of motion, and pain...SO MUCH PAIN. 

The dual diagnosis is a lot to deal with, but also why Rare Disease Day is important to me. I hope for new treatment options. I would like to raise awareness so you can help someone you may know that is going through something similar. I have lost the physical ability to do many things I loved. I have had to cancel many plans, miss out on activities and events, and have also lost friends. If you take anything away from this post about Rare Disease Day, I hope you can better understand how to support a friend or family member with a rare disease.

• Be ready and available to LISTEN! Don't try to tell them you know exactly what they are going through because you had a headache last week, or broke your ankle when you were a child and had to use a wheelchair for a week. The older I get, the more fully convinced I am that we can never fully know what someone else is going through, because we are all so very different. 
• Along those same lines, as much as you want to, please don't offer medical advice or try to fix the problem. I can't even tell you how many times someone has told me about a vitamin or medication that I should try because it helped their Aunt Betty with knee pain. Seriously, it is unlikely that you can offer your friend information that they or their doctors are not already aware of. Offering unsolicited medical advice says to your friend that you know more about their rare disease and medical history than they do (trust me, you don't). 
• ASK how you can help! It's great if you love doing laundry or mowing the lawn, but instead of offering to do what you like doing, ask them what would be the most helpful for them. Maybe laundry isn't a struggle for them, but getting out to the grocery store is. Don't force your help on them either, but gently remind them of your willingness. When they need you and are ready to accept help, they will call upon you.
• Try to include your friend in things. Again, just ask! Maybe holding the event at their home would be easier for them, or offering them a ride, being willing to leave early if they aren't feeling well. Don't push, but be aware that there are many factors that can make us feel isolated, and many can be overcome with a little willingness and creative thinking.
• Don't assume because someone looks fine or is smiling, that everything is okay. This is true in situations other than rare diseases! We are great at hiding our pain, but sometimes having a friend who will ask and listen, is just what we need 💜 It can often seem like we talk too much about our illness and pain, and yet it envelops every aspect of our lives and we need to feel free to discuss it with those closest to us. I don't talk about it to whine or complain, but simply because it can be so overwhelming.
• Be flexible! Be willing to change plans, or as we like to say "adapt, improvise and overcome." It is hard to know how you will feel a week from Tuesday, and therefore we sometimes avoid making plans rather than canceling. I truly appreciate friends who say "text me that morning and let me know if you feel up to meeting, or we will pick another day." I feel loved and cared for, and makes me feel less guilty knowing that I haven't let them down.

Hopefully there is some helpful information here. Have a great Rare Disease Day today!

Additional information about rare diseases here and here.

#zebrastrong 

Until Nest Time~

Shari

Off To A (Not So) Great Start

 Many of you have mentioned that I haven't blogged in a long while. Honestly, sometimes events or thoughts spur a blog post, and I can't sleep until I get it down on paper. Other times, many months or longer fly by, and I don't have much to say (hard to believe, I know). The truth is that lately I haven't felt well enough to do much of anything except that which is essential for daily living. 

It has definitely been a rough couple of months. I had a cold just before Thanksgiving, and got better just in time to have my second bout of covid the first week of December. I am thankful it was mostly like a mild flu, and MUCH easier than the first round in October 2020. I felt pretty much back to my "normal" by mid-December. I got back to regular activities and enjoyed the holidays with family. Our daughter was exposed to covid, and tested positive a few days after New Year's Eve. I started getting sick again a couple days after exposure, but tested negative. I had all the symptoms, and the doctor said to assume I had the Omicron variant based on my symptoms and exposure.

I had mild cold/flu symptoms for less than a week, but with some lasting congestion. I was mostly okay by January 8th, but only for about 7 or 8 days. Things went back downhill as I continued to battle congestion, sinus headache, overwhelming fatigue, dizziness, and other cold symptoms. I just really wasn't getting better, so I finally saw the doctor this past week. She thinks it is likely "lingering covid" symptoms which can persist for 12-16 weeks!! I started antibiotics a few days ago, and a steroid pack today, and am feeling completely miserable. (I am so thankful I bought a case of tissues a few months ago, because I have needed them)

I don't usually lounge around, even on bad days, but lately I haven't had much choice. It has been an extended time of reading, praying and napping (some whining about how bad I feel too). I actually have a hard time doing "nothing", so even when I feel sick, I usually make dinner and keep up with housework. 

I feel like this past year has been like 60 grit sandpaper, sanding down the rough spots and making me more aware of my weakness and sin, and my utter need for my Savior! No one likes to walk through the valleys, but how much more does the grace of God shine through when there is nothing else we can cling to but Christ!

It is easy to feel weary and frustrated when things like this are added upon my normal health struggles. It takes deliberate and intentional steps to stay in the Word and prayer. God promises us that He will never leave us or forsake us (Hebrews 13:5), but that doesn't mean Satan wouldn't love to get us wallowing in self-pity. So, I will try to enjoy this extended time of rest, and remember God's promises. We truly have SO much to be grateful for, especially our Savior.

Until Next Time~

Shari

My Familiar Friend

 Suffering and I are well acquainted. Chronic pain has been my almost constant companion since 1998, when I first began having symptoms, and although it has changed in placement and intensity over the years, it has rarely left my side. I have read a LOT of books on suffering and what the Bible has to say about it, especially ones that help teach me to suffer well. While I still cry out to God in pain and plead for mercy and healing at times, my more consistent prayer has been that I might suffer well. Above all I want to suffer in a way that brings glory to God, and draws me nearer to Him. 

Chronic pain is difficult, and I would not wish it on anyone. It is definitely not something I wanted, but without a doubt God has graciously used it in my life. I have learned to appreciate more of the little things, love others with greater sympathy, and trust God more fully. It is not the healthy person who seeks a doctor, but the sick. My illness has caused me to seek God more intentionally, more often, and with greater urgency than I would otherwise have done. He has answered those prayers in many ways, though often not in ways I had hoped.

I have noticed this week that my Bible study, random FB scrolling, and a book I am reading have all been great reminders on the ways God has answered those prayers. I am sure you have all had similar experiences when everything you seem to hear and read go together as if God is trying to get your attention on that topic. A couple weeks ago, as I was working through Colossians with a dear friend, we were confronted with the final verses of chapter 1:

"Now I rejoice in my sufferings for your sake, and in my flesh I am filling up what is lacking in Christ's afflictions for the sake of his body, that is, the church, of which I became a minister according to the stewardship from God that was given to me for you, to make the word of God fully known, the mystery hidden for ages and generations but now revealed to his saints. To them God chose to make known how great among the Gentiles are the riches of the glory of this mystery, which is Christ in you, the hope of glory. Him we proclaim, warning everyone and teaching everyone with all wisdom, that we may present everyone mature in Christ. For this I toil, struggling with all his energy that he powerfully works in me." (verses 24-29)

The commentary I am using (written by R. Kent Hughes) expresses that v.24 is one of the most widely debated verses in all of scripture! That is sobering as I seek to rightly handle the word of God! I suggest you read and study this portion on your own, because I will not be breaking that all down for you, but I did glean very useful insight from the commentary. Hughes states on page 248, "Paul knew his sufferings were for the Church and that they brought to him a special closeness with Christ. Every blow that fell on him fell on his Master and thus bound them even closer in mutual suffering." He goes on to talk about the story of Shadrach, Meshach and Abednego in the fiery furnace, and how God was with them. (Daniel 3:25) He ends that paragraph with this, "Paul knew sufferings are miserable, but the resulting sense of union with Christ is wonderful." (for you Veggie Tales fans, the "Rack, Shack, and Benny" tune is probably stuck in your head now. You're welcome!)

As I was scrolling through my Facebook news feed, I ran across this short video from Joni Eareckson Tada:

www.facebook.com/JoniEarecksonTada/posts/6418170734890062 

After more than 50 years as a quadriplegic, and a breast cancer survivor, she knows more about suffering than many people, and she clearly expresses how hard it is to deal with the pain, along with how much we need Christ in the midst of it. Christ doesn't magically make everything go away or stop hurting, but he is there with us in the midst of the trial. He comforts and strengthens. He gives peace and wisdom and love. We are bound with Christ in a special closeness in the midst of our pain. He is an even closer, constant companion than our pain!

In addition to those two items, I am reading a new book. As I mentioned earlier, I have read SO many books on suffering, but this one is a bit different. "Dark Clouds - Deep Mercy: Discovering the Grace of Lament" By Mark Vroegop is a book that helps us to see the benefit of lamenting. Every chapter thus far has really shown me how and why to use biblical lament in prayer. We cry out to God, with our hurt and pain, for God knows our struggles and thoughts anyways, yet we also keep our eyes upon Him throughout. Lamenting allows us to feel the pain of our situation, grieve it openly while still seeking God in it's midst.  I am not much of a book reviewer, but if you struggle with grief or pain of any kind, I highly recommend you grab a copy of his book and read it! The Psalms are full of such good examples on how to really cry out to God in our grief, and he masterfully teaches us how to benefit.



I figured since this same topic has been impressed upon me several times in the last two weeks, I would share it with you! I pray you find comfort also in the One who holds us in His great care. 

As a quick update on me, it is time for our annual trip to Mayo Clinic. We head there on the 15th for several tests and then check in with my doctor before heading home late on the 17th. Another whirlwind September trip for us. I am hoping to discuss any other treatment options that may help me, and determine the risks of those medications in the middle of a pandemic. Lots to think through, and would appreciate prayers for wisdom, as well as physical strength. The jam-packed, short trips to Mayo are difficult, but it is too expensive for us to drag them out over several days, besides our pup, Willow, would miss me WAY too much! 😁

This year brings the added joy of being at Mayo during the same days as good friends of ours, and as weird as it is, I am looking forward to waiting room chats and quick bites to eat together between appointments. Like bringing a little bit of "home" along with us! 

I am sure there will updates coming! (c'mon, you know I'm an oversharer) Please also pray we stay healthy, both now so I don't have to cancel my trip, and afterwards, since we think I got covid there last year (tested positive 6 days after).

Thank you all for reading!

Until Next Time~

Shari

When Did I Quit?

 I can't really tell you the day or the hour, or even the week, but at some point I feel like I gave up. What does giving up mean you might ask? Well, for me it was cloaked in my thinking that I was just accepting reality.

I have always been a fighter. I had a friend tell me once that I'm the kind of person that walks right up to a challenge, and never backs down, but finds a way through it and overcomes. I am not too sure that that's true anymore. My disability has been a long, slow journey. As more and more of my work, hobbies and pastimes were stripped away, something changed in my mind that convinced me I couldn't do it anymore, and thus I shouldn't bother to try. In all reality, many things have gotten much harder, but they are still possible. We have taken more of an "adapt, improvise, and overcome" approach in the sense of solving issues as they arise, but mostly I have just given up a lot of things that I put in the "too hard to do anymore" category.

I don't feel sad about this, again, it just seems like it's my reality. I really am okay being somewhat of a hermit. I've always been on more of the shy, introverted side of things, and spending a lot of hours alone usually doesn't bother me too much. However, when I look back a few years ago and compare that life to now, I feel like I've changed so much sometimes I hardly recognize myself. I used to love to just go browse thrift stores or antique shops, and we were always out doing things on the weekend. Museums, kayaking, and lots of hiking were among our weekly outings. Now, when I see that I have a couple of physical therapy appointments in the same week, I feel slightly overwhelmed that I have to leave home multiple times (especially by myself). All of it just seems too difficult, so it has gotten easier to just stay home. The thing is, I'm actually very content at home. This fact actually leads to making the situation worse though. If I was the kind of person who missed getting out and doing things, or missed large groups of people, I think that I would force myself to do more even if it's harder than it once was.

Years ago, my blood pressure was creeping up and I was having issues with blood sugar. I decided I had had enough. Literally overnight I changed the way I eat and exercised. Within a few months I had dropped 40 lbs and no longer needed to have any medication for those issues. I maintained that for about 3 years, but gradually as things got more difficult for me physically, I started to make little excuses and exceptions. A quick bite of food here or there that wasn't on my diet, skipping exercise because I was in too much pain, and things like that started to become more normal. Now here I am back at the weight that I started at in 2012. I've been on blood pressure medication for more than a year, and I've started to have problems with blood sugar regulation again.

In my mind, I still feel like that young, strong, fighter, and yet in reality have become something different. I'm not sure this is all bad. I can easily make excuses for how I'm taking care of myself, but the truth is I would prefer to be that younger healthier woman. Days like today when the pain isn't too bad, I wake up and face a new day with determination that I'm going to change everything on a dime again. Lately though, I make that proclamation a few times a week, and by the end of each day I feel defeated as the reality sets in. My lack of mobility and increased pain slowly strip away my intestinal fortitude. I used to think all I had to do was pull myself up by my bootstraps and muscle through. Another friend of mine reminds me the bootstraps are nowhere mentioned in the Bible! I no longer feel that that is actually true, not everything can be overcome. Grit and determination aren't always enough.

Above all I do believe that the battle for all of this begins in our minds. What we believe about ourselves and the world around us really does impact what we think and feel. The Bible, which is God's word, is my ultimate source of strength and truth. It's where I go on good days to be reminded of God's loving plan, and it's the thing I cling to on bad days to remind me of God's providential care. 

I'm very thankful that God has helped me to be content in my circumstances, to learn to trust him more, and deepen my faith in the midst of all my struggles and suffering. God may not really care if I weigh 160 or 120 lb, but I know he absolutely does care for me! Because I'm an all or nothing kind of gal, it's hard for me to just try to choose one small thing and focus on accomplishing that. When I wake up in the morning and think about changing something in my life, the conversation in my head looks more like this:

"Okay. Today I will stop eating or drinking anything that's not healthy, eat less overall, exercise at least an hour every day, and get out and do more activities with family and friends. Also, be home in time to make dinner."

That all sounds super easy, right!? Obviously, when I can't accomplish that to 100% perfection, it tends to discourage me and makes me want to give up. My biggest struggle these last few years is realizing that everything is not so black and white. I'm learning to embrace the gray. Today I'm going to focus on one small thing I can do that will be healthier for me, and work to do that. Tomorrow when I wake up, I'll remind myself not to look back at my failures, but to stay present today and focus on one more small thing I can do. God's mercy is new every morning!

I'm reminded of the song from Santa Claus Is Coming To Town where the lyrics say:

Put one foot in front of the other,
and soon you'll be walking across the floor.
Put one foot in front of the other,
and soon you'll be walking out the door.

Walking across the floor

Do you set goals for yourself? Do you set yourself up to fail like I do? What one small thing can you do today to make a bigger difference down the road? Share with us in the comments!

Until Next Time

~Shari

OUCH!

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

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

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

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

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

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

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

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

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

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

Until Next Time

~Shari

Counting Our Blessings

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

~Until Next Time

Shari

Undone in Twenty-One

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

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

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

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

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

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

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

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

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

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

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

Until Next Time
~Shari

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

(UN)Happy Valley

 I am not sure if anyone else uses this term, but my husband and I tend to call a sleepy, small and safe town (like the one we live in) "happy valley". If you live in a "happy valley", you probably know your neighbors, and maybe don't always lock your doors. You might feel somewhat isolated from big city crime and possibly let your kids play outside without much concern. Recently the term "happy valley" has come to my mind several times. I don't know where we first heard the term. A quick Google search reveals there is an actual town named Happy Valley just outside Portland, Oregon (who knew?). I didn't see a Wikipedia article explaining it the way we use the term, so maybe it isn't a common expression!

I am not even sure how we came to think of a valley as a happy place. Most everyone has heard the familiar words of Psalm 23 verse 4 that read:

"Even though I walk through the valley of the shadow of death,

I will fear no evil,

for you are with me;

your rod and your staff,

they comfort me.

This valley doesn't sound all too happy! Although we can fear no evil, with God by our side, and trust him to comfort us. Valleys most frequently used to tell of the low times we go through. Scripture often uses imagery to paint a picture of an idea. Picturing "the valley of the shadow of death" paints a pretty dark picture. Mountain tops are often used as illustrations of a closeness to God, while being in the valley is more desolate.

This year has been overwhelming for most people on so many levels. Political divides, riots, unemployment, worldwide pandemic, and even murder hornets are on the news day after day. Just one of those things is enough to bring us to our knees in prayer, and all of them at once seem almost too difficult to bear up under.

I have had a difficult couple of months myself. Worsening (and virtually continuous pain) is hard enough to handle. It is amplified by the disconnection from friends and family that the coronavirus has caused, and my husband's loss of his job. On top of that, I continue to struggle physically with doing things I enjoy or even chores that must be done. My body does not always cooperate with my to-do list!

When we came home from our Mayo Clinic trip in September, I brought home COVID-19 as a souvenir. I had a fairly mild case, but there were still a few difficult days followed by extreme fatigue. Just as I started to come up for air, I had a mild flu or a bad cold which knocked me down again. Each illness has ripple effects as I seem to lose a little more stamina, bounce back a little slower than I once did, and do not quite make it all the way to 100%. 

Lately it feels like I am in a valley, darkened by the forest canopy that blocks the sun. It doesn't feel like a "happy valley" and yet I am comforted. God is with me, regardless of how I feel. Each step of the way, as I am learning to let go of my plans, dreams, desires, and abilities, God has given me peace. Every painful step has been taken intentionally, moving me onward instead of remaining stagnant. I am not "happy" in the midst of all of this, but am able to have a joyful heart. One day I will look up and see the sun, realizing that my journey has brought me out of the valley. The nighttime of tears will be replaced with the joy that comes in the morning (Psalm 30).

This year has been long, and we all could use a little sunshine. Hang in there. Morning is coming! Flee to Christ, that you may find comfort and joy in him. Lift up your eyes to the hills, for there is where our help comes from (Psalm 121:1-2). Lift up your eyes and see that the view isn't so bad. Maybe we can rename this place our "Joyful Valley" as God restores to us the joy of our salvation (Psalm 51:12), and lifts our eyes off of our own temporary struggles.

Until Next Time

~Shari

Shattered Comfort

What can I say about the start of 2020 that you haven't already been made aware? Global pandemic, protests, riots, and SO much political bickering it has, quite frankly, become depressing to be on social media at all. Who could have ever predicted that asking to wear a mask would become a political divide? I am not a theologian, politician, or historian. I am a suburban, white, Christian (reformed), woman with a disability, who feels a bit like giving up. What that means exactly, I haven't quite figured out, but what was once my comfortable little corner of the world, now seems disquieted.

Racism has been the topic most recently dividing my social media newsfeed into an "us" and "them." There seems to be no end to those divisive words thrown about on any given topic. I have just been shook from my comfortable suburban life these past few months, which is a good thing. I have said before that my prayer, my desire, is that God might show me areas in my life where my thinking has been wrong. That I might never get too "comfortable" thinking I have it all figured out. I pray He would reveal to me those hard to see personal sins and my lack of concern and compassion. Give wisdom in areas of ignorance, and grace to change wrong beliefs. Lately, I have prayed for forgiveness in turning a blind eye. So easy to get wrapped up in ourselves, our family, our problems, and forget there are others.

I am sure we all have our favorite spot to sit and read, or that well-worn seat where we wrap ourselves in a blanket and binge watch our favorite show. We have our routines. Each family settles into their "normal" busy lives. We get very comfortable there, don't we? There is a sense in which we think that other people's lives look much the same....or maybe we don't think of their lives at all.

I have noticed the defensive posture many of us take on social media (a posture we may not be so bold in maintaining if we were face to face). Someone calls mask-wearers sheep, or non-mask-wearers are heartless people who don't care if they infect others. It is hard not to put up your shield when approached in such a strong way. We may feel the posts on racism don't include us. Our comfortable live is shaken thinking about some of these issues. And it should be!

If our first thought on any issue is to indignantly reply, "Not me!" instead of taking a close and honest look at our lives and hearts, we have chosen a prideful and dangerous response. I have learned so much about the virus, studied medical journals, read peer-reviewed studies, learned about COVID-19 as the doctors around the world are learning about it. I have also read YOUR posts, both sides of the debate, and then I have tried to form my own (hopefully wise) opinions. BUT I hold that all loosely! So much is still unknown about this new virus. I cannot dogmatically hold firm to what I believed 2 months ago, because new information is coming in that changes that. I must be willing to learn and change also.

The same is true of the recent talks of racism and the Black Lives Matter movement. I have learned more in the last few weeks about black history, reading personal stories from people of color, and have more fully realized that all of our experiences are NOT the same. We do not all have the comfortable suburban life. We do not all have the same struggles or opportunities. I do not think all white people are racist. I do think all people of all colors need to be willing to learn and listen. If someone accuses you of being a racist, I understand the tendency to assume the defensive posture. No one thinks of themselves as a bigot, but we do all have biases. We all have difference experiences/backgrounds which shape our worldview. We must begin to understand that our lives, in fact, do NOT all look the same on a day to day basis.

This hasn't been on the news much if at all, but there have definitely been other forms of discrimination made clear to me these past few months as well. Ageism and Ableism.

Ageism: "Ageism is the stereotyping and discrimination of individuals or groups on the basis of their age; ageism can take many forms, including prejudicial attitudes, discriminatory practices or institutional policies that perpetuate stereotypical beliefs." (source World Health Organization)

Ableism: "Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that people require 'fixing' and defines people by their disability. Like racist and sexism, ableism classifies entire groups of people as 'less than,' and includes harmful stereotypes, misconceptions, and generalizations of people with disabilities."

(source accessliving.org)

I am saddened to see how hard hit nursing homes and group homes for individuals with disabilities have been hit. To be clear, these are not the expensive, private homes that you may see in the upper-middle class neighborhoods. These are the state and federally funded homes that Medicare covers. Places like my grandmother lived. I remember the horrible smell, and the patients left sitting alone in the hallway. Others wandering around half dressed, and seemingly uncared for. We only went to visit her a few times. Our society doesn't place a whole lot of value on the "old" or the "infirmed". If you can't contribute or produce, you don't have much value. That may seem harsh, maybe you feel that impulse to assume a defensive stance. You may not feel that way about your own mother, but that doesn't mean you aren't ageist, much the same as having a black friend doesn't mean you aren't racist. 

People with disabilities are an often overlooked and neglected group as well. Homes like I mentioned above are frequently places of abuse. The National Institutes of Health estimates 1 in 10 are abused in settings like this. Are you aware of this? Recently a man who was living in a care home like this was allowed to die of COVID without treatment, because doctors deemed his quality of life not worth saving.

I have personally experienced ableism (and sexism, but that is a story for a different day!). The ableist says things like: "Such a shame, you're too young to be stuck in that chair" or "I would want to kill myself if I had to deal with what you are going through." (real life examples)

Sometimes it is blatantly obvious, other times it is more subtle. Maybe just a superior attitude of "I can do it better/easier" or condescending "you poor thing." People talk to me like I am 3 years old sometimes, "Look at you, doing that all by yourself." It is more than just words, but again, a systemic problem. Society as a whole does not give any thought to people who are not the same as them. In this case, not the color of my skin, but the ability of my body. Could be missing limbs, or paralysis. Might be a developmental issue or genetic disease that cause you to move, act, speak differently or not at all. Maybe you are deaf or hard of hearing. The world around us is built by and for people who look and move a certain way....."normal."

I have not counted, but conservatively half of the places I go have accessibility issues. Even places that have been made by laws to add an accessible bathroom, block the hallway with chairs or boxes. The worst is all the hospitals and doctors that have step-on garbage cans in the accessible bathroom (I have mentioned this issue before). Recently I had a test done at a local hospital and the bathroom in the room had the handicapped accessible plaque. Unfortunately, it was an old surgical room turned into the testing site, and the sink only had step-on (foot controlled) water. I can stand, but am not stable. Just trying to balance on one foot to step on something to wash my hands is very difficult, and puts me at risk for falling. Others may not have use of their legs, and would be unable to clean up after using the bathroom. I came out after my ordeal, and mentioned to the tech about the foot pedals not being accessible, and they should fix the bathroom to be ADA compliant or removed their sign. Her response is an example of ableism. 

She replied, "It has a grab bar, so that makes it accessible."

Me, "No, much more is needed for a bathroom to be accessible. If I have no use of my legs, how do I wash my hands?"

She thought for a minute and said, "Maybe the person who hung the sign didn't think about someone having legs that don't work, do you think that's it?"

me *blink* *blink* "Yeah, I think that's it."

This seems like a battle I can't win. Maybe you think that ignorance doesn't mean you are ableist. Maybe you are right. Maybe you are wrong. My main point about all of this is that we don't need to attend a white nationalist rally to be racist, or knock little old ladies down in the street to ageist. We need to open our eyes to see the differences around us (color/race, age, sex, ability, etc.), acknowledge and honor those differences. Recognize that when you say "all lives matter" it doesn't excuse ignorance of the situation. All people's lives do matter. Absolutely! And because they do, they are worth our time to get to know, to learn about their struggles, to love, and to treat like a fellow human being. Stop using terms like "us" and "them" and start seeing all of us and "we."

So far, 2020 has been the perfect storm in a sense. Isolation during the shutdown. Perhaps fear of the virus, or for loss of liberty. The nation watched George Floyd being killed, and the desire for justice gave way to protests and riots. We all want to be heard and seen. Take some time to learn about people that are different from you, if all our lives matter.

It is so easy to stay in our comfortable corners of the world, and pay little attention to things that don't impact us. Lately I feel shaken, broken even. There is SO much injustice, so much passing the blame, so little self-reflection. 

So, I pray. 

I pray for myself. May my eyes continued to be open, and may God show me how to contribute in a meaningful way. May He continue to guard my tongue, helping me to respond in love to people who show me ableist attitudes. I pray He helps me to truly see and hear the people created in His image; to love them as He loved me.

I pray for all of you also. May each of you set down your shield, and be willing to read things from the other person's perspective. May we all compare these things to God's word, being willing to grow, change, and repent in areas where needed. May we seek to reconcile and love those across the divide. 

I pray for the US, that we might not just go back to our comfortable pre-pandemic lives, and forget all that 2020 has revealed to us. May God be glorified in our lives, and throughout the world!

Until Next Time~
Shari