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 I was depressed and withdrawn for most of grade school.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

Daily Absence

 Imagine that your elderly mother's birthday is coming up in a couple of weeks and you have the bright idea to plan a surprise birthday party for her. Within minutes, your brain is whirring with to-do lists and plans. You sit down the first chance you get and make a list of guests. Over the next few days you are super busy as you begin squeezing in the party planning along with all your regular activities. You realize you haven't talked to your mom in several days, which is unusual, but you brush that guilt aside because you are busy. You are SO excited and it will be great to spend the day with her on her birthday-- besides you are horrible at keeping a secret and don't want to say anything to ruin the surprise.

Two weeks fly right by and the house is decorated to perfection. Guests start to arrive, and you feel nervous butterflies in your stomach because you want so badly to please your mom and make this day a success. As people start to mingle, you just can't shake the feeling that you forgot something, and it starts to gnaw at you. Within a couple of minutes you realize what the problem is...you forgot to invite your mother. 

The guest of honor isn't there! Embarrassed and guilty, you make excuses and justify how busy you were. Surely you aren't the only one who would have done all of this and forgotten the most important thing. The guests are having a great time. You notice the cheese platter is empty, and before you think about it again, you are back to being a good hostess. As the party winds down, people trickle out and you start the process of cleaning up the party aftermath so you can be ready to get to work tomorrow morning. Just before you head to bed, you call your mom to say "Happy birthday! I love you. Talk to you later. I am very tired. I had a busy day," and hang up the phone just before you drift off to sleep.

Does this all sound ridiculous? Impossible even? I would hope so, yet I fear many of us live our lives just like this when it comes to God. I heard the term "Functional Atheism" many years ago, and it has always stuck in my head. We live busy, independent lives. We go through our day with very little (if any) thought of God, His Word, or prayer. We get things done, run around completing our to-do lists, serving others in God's name, and yet fail to actually include the guest of honor in any of our plans. Basically, we live functionally as though we are atheists, simply planning and doing the tasks we need to do.

Oftentimes I lift my head from a project I have been engrossed in, maybe even frustrated with, and realize that I haven't bothered to pray and ask God for wisdom. In fact, I never even bothered to ask if the task is something I should be doing at all. I lay down to sleep at night, and the thought pops into my head that I should pray, because I "forgot" again today, or didn't have time, only to wake up in the morning and have only a brief memory of a few sentences uttered before I was sound asleep.   When this happens do I spend my morning in prayer? No, to my own shame I do not, but instead I get up and hit the ground running. After all, the dog needs to go out and I am hungry and there is a lot on my to-do list today!

We tend to be driven to God in prayer when bad things happen, and our daily lives are disrupted. The war in Ukraine has been that driver for me the last few days, as reading stories from the people there and seeing the devastation has reminded me how much we need God to intervene. I started to think about those words again: Functional Atheism. Why do I struggle so to be faithful in prayer? God forgive me! I am utterly and completely dependent upon Him for life, light, faith, breath, and, well, EVERYTHING! Yet I continue to rush ahead in my own strength to do all the "good things" I think I should be doing, and all the busy days just keep flying by. May we all be more fully aware of our need for Him. May He graciously increase our desire to spend time with Him, causing us to trust Him more fully.

Until Next Time~

Shari