Showing posts with label About Me. Show all posts
Showing posts with label About Me. Show all posts

Friday, July 24, 2026

Latest Endeavors

 Hello! I was recently asked to join the Beauty Berry Writers Collective. Today is my first day writing with this team of wonderful Christian women and you can read my introduction on our Substack Upheld. Upheld was started to provide encouragement to parents who have raised children with special needs. I am joining the team to expand the focus to include life as an adult living with a disability. Please subscribe for weekly devotionals designed to strengthen your faith and encourage your heart through life's trials.

Going forward, my blog will focus on personal health updates. I have another appointment soon and hope to let you all know the latest in a couple of weeks. Thanks for reading! I look forward to you joining us on Substack!




Until Next Time~

Shari


Thursday, July 2, 2026

Choose Your Own Ending

 When you were a kid, did you ever read a "choose your own ending" adventure book? I have fond memories of reading books like that, and my super organized personality (yes, even back then) made me go through the book many times to combine every possible story telling option. It was fun to see all the different ways a story could progress if just one choice had been changed. Unfortunately, our lives are not like that. We don't get to go back in time and choose a different pathway to see if it leads to a better outcome. 

My breast cancer journey began almost 6 months ago now. There have been a lot of twists and turns, and choices I have had to make. Currently we have decided that I cannot tolerate any of the three available aromatase inhibitors, so I will start the fourth and final medication on Monday. It is a different type of drug, and works differently, so hopefully I can tolerate the tamoxifen, and it does what it is supposed to: prevent cancer recurrence.

Chad and I joke sometimes about doctors and the term "practicing medicine" as it does seem like they are all still practicing! I have met with an oncologist, surgeon, radiologist, and each of them has a physician assistant, so there have been 6 different medical professionals handling my case. You would think that a multitude would be good (and it very well might be) but it has also caused some confusion. One doctor says "the cancer is gone" and the next says they will order a test to be sure "the cancer hasn't spread". One tells me the medication is essential if I want to not have the cancer return, and another says they tend to over-medicate and my risk is low.  How is one supposed to navigate a system where even the educated medical professionals can't seem to agree?

I wish I could approach this like a choose your own ending book, and see which choices make the best outcomes, but that simply isn't reality. Instead, I spend a LOT of time researching on my own, talking to all 6 of my health care team members, discussing it with my family, and then I pick a path forward. I do not know where the path leads. I do not know what the foreseeable future holds.

One thing I do know is that ultimately my future is secure, entirely anchored in Christ (who He is and what He has already done) and not dependent upon my choices or the strength/health of my body. I make the best choices I can and move forward one day at a time.

1 Peter 1:3-9 (esv)

"3 Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, 4 to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, 5 who by God's power are being guarded through faith for a salvation ready to be revealed in the last time. 6 In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, 7 so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. 8 Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, 9 obtaining the outcome of your faith, the salvation of your souls."


I would appreciate your prayers as I begin the new medication and continue to make difficult decisions. May God graciously provide me with many more years, but I fully trust whatever my God ordains is right! 💜

Until Next Time~

Shari

Wednesday, June 24, 2026

Another Fork in the Road

 You may have realized by now that I never do anything the easy way! I had to stop taking the second medication because of difficult side effects. After a lot of research and discussing everything with my doctor, we have decided to try another medication. The meds they want me to take will help stop the breast cancer from returning, although it is no guarantee.

There are 3 drugs classified as aromatase inhibitors, which basically rid your body of all the estrogen and starve the cancer cells. I will start the exemestane this weekend (after my scheduled Friday colonoscopy). The risk/reward ratio is substantial enough to give it a try. If I experience adverse side effects again we will stop this medicine also, and move on to one last similar drug.

Tamoxifen has been around much longer than the above mentioned aromatase inhibitors. Tamoxifen is in a class of drugs called selective estrogen receptor modulators (SERMs). It works differently. It binds to estrogen receptors and blocks the hormone from fueling cancer cell growth. My mother took this medication back in the late 1990's.

I will try exemestane first and stop it if I run into problems again (I will know within two weeks). If I need to, I will start the Tamoxifen and do the same two-week trial. If I cannot tolerate either of these, then I will be carefully monitored, and if the cancer returns, they will recommend doing the double mastectomy at that point.

I am still managing one day at a time. It is well with my soul. I am enjoying every minute with my granddaughter. Life is pretty good, even in the midst of these trials. Glory be to God!


Until Next Time~

Shari

Wednesday, June 10, 2026

Still Trekking Down The Path

The last few weeks have been a roller coaster! The highs of providing full time childcare to our first grandchild intermixed with starting the aromatase inhibitors (anti-estrogen cancer meds) and the dreadful side effects. If you have read much of my blog over the years, you probably know that I joke about always being the 1% of patients that experience rare side effects. I don't know why I seem prone to medication difficulties, but whenever I need to start a new medicine, I ask about the less common side effects and weigh the benefit / risk ratio.

Aromatase Inhibitors are a common treatment in hormone+ breast cancers and are highly effective at reducing the risk of recurrence by 40%. The drugs work well, but they also come with some unpleasant side effects. To be fair, up to half of the women who take the medicine actually tolerate it very well; I am not one of them. The most common issues are: 
  • typical menopause symptoms (hot flashes, night sweats, and among others)
  • bone density loss over time
  • weight gain
  • joint and muscle pain
I am experiencing some of those (not the longer-term effects), but I also have some less common side effects like dizziness/lightheadedness and nausea/stomach pain. I tried letrozole first and the side effects were unbearable, so after 2 weeks we switched to anastrozole, but only every other day instead of daily. I have been on the anastrozole almost 3 weeks. I am experiencing the same side effects, but they are somewhat more tolerable. It has been a rough 5 weeks on the drugs and cannot imagine doing this for the estimated 5-10 years. I am thankful I did not need to do chemo and try to find some comfort knowing that these meds are not as bad as chemo would have been.

I am reminded of the Lord's Prayer (Matthew 6:9-14), in which we ask God to provide our daily bread, and the refrain and last verse of the hymn Great is Thy Faithfulness-

Refrain:
Great is thy faithfulness,
Great is thy faithfulness,
Morning by morning new mercies I see.
All I have needed thy hand hast provided;
Great is thy faithfulness,
Lord unto me.

Pardon for sin and a peace that endureth,
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine and ten thousand beside. 

If you looked up the Lord's Prayer in Matthew 6, you could keep reading through that chapter and see that God cares for each of us individually. He clothes us and feeds us. He provides grace each day to face whatever we might be facing. In verse 34 we are reminded to not worry about tomorrow because each day has enough trouble of its own.

To all who are in Christ Jesus, who have come to Him weary and heavy-laden, and have trusted in Him for forgiveness, we can rest in Him, knowing that His burden is easy and light (Matthew 11:28-30). Ultimately, I give thanks to God for the strength and mercy He provides me each morning. I look expectantly towards that "bright hope for tomorrow" of my imperishable inheritance that is found only in Christ (1 Peter:3-9), my only hope and comfort during this difficult life.

Until Next Time~
Shari

Monday, May 4, 2026

Resting...Sort Of

 Hello! I thought it was time to update how I am doing. Tomorrow will be 3 weeks since I finished radiation, and the fatigue is lingering longer than I would like, but my skin has really healed up. I am moving in the right direction! I started the anti-estrogen medication (Letrozole) two days ago, and so far, I don't have any side effects. 

Now that the hard part is over, I think this next season will be one of resting. If you know me, you know resting is not easy for me. I tend to keep pushing through to get things done, but that isn't the best idea right now as I let my body heal, so I keep on trying to learn to just R-E-S-T.

This past week, I started my new gig as full time grandma providing childcare. Nothing helps you slow down a little like an 11-week-old baby that likes being held. 😁 My cancer diagnosis has really helped me to think more about how I spend my time, and what is truly important. Holding my sweet grandchild is way better than to-do list, social media scrolling, and other busyness that draws us away from the better things.

So, my current prayer is that I learn to just rest, not only physically, but keep learning to more fully rest in Christ. He did all the work, so that I could enter His rest, and I pray also that you are able to do that as well.


Until Next Time~
Shari

I will leave you with the lyrics to the hymn: Jesus, I am Resting, Resting



Jesus, I am resting, resting
in the joy of what thou art;
I am finding out the greatness
of thy loving heart.
Thou hast bid me gaze upon thee,
as thy beauty fills my soul,
for by thy transforming power,
thou hast made me whole.

Refrain:
Jesus, I am resting, resting
in the joy of what thou art;
I am finding out the greatness
of thy loving heart.

O how great thy loving-kindness,
vaster, broader than the sea!
O how marvelous thy goodness
lavished all on me!
Yes, I rest in thee, Beloved,
know what wealth of grace is thine,
know thy certainty of promise
and have made it mine. [Refrain]

Simply trusting thee, Lord Jesus,
I behold thee as thou art,
and thy love, so pure, so changeless,
satisfies my heart;
satisfies its deepest longings,
meets, supplies its ev'ry need,
compasseth me round with blessings:
thine is love indeed. [Refrain]

Ever lift thy face upon me
as I work and wait for thee;
resting 'neath thy smile, Lord Jesus,
earth's dark shadows flee.
Brightness of my Father's glory,
sunshine of my Father's face,
keep me ever trusting, resting,
fill me with thy grace. [Refrain]

Friday, March 13, 2026

Treatment (Finally) Begins!

 And the good news just keeps on coming! After waiting 8 weeks, I finally had the MRI yesterday and it looked good. I will have to repeat all the tests in 6 months, but today I had my radiation simulation appointment (a non-treatment planning session). I am scheduled and ready to start radiation on March 24. Next week I will return to the oncologist to start anti-estrogen meds.

My whole story really seems like a miracle! A routine mammogram and ultrasound in September 2025 found nothing. My breast surgery on January 13 just "happened" to remove the area of cancer, and the pathologist found it. ALL of the testing came back with the best possible outcome. I praise the Lord for this great mercy!! Yet, I still have cancer, it is emotional and difficult, and it still sucks even if it is stage 1.  Pray for minimal side effects, response to treatment, and no recurrence. As I have said before, please always pray that I would suffer well, and may God be glorified through all of this!








You may have heard that we are grandparents now! Sweet little Maddie is 4 weeks old today, and she is the perfect treatment plan! There is nothing like a baby to make you forget your troubles and focus on what is important.


If you would like to learn more about what I will be going through, this short 9 minute video explains radiation treatment for breast cancer specifically. I will be doing hypofractionated whole-breast irradiation (WBI) regimen for early-stage breast cancer. Because the radiation will be on my left side, it will involve:  Deep Inspiration Breath Hold (DIBH) - a technique for left-side breast radiation that involves taking a deep breath and holding it for 20–40 seconds. This expands the lungs, pushing the heart away from the chest wall and significantly reducing radiation exposure to the heart. 

For all the other science nerds like me - this is the standard treatment of 42.5 Gy in 16 fractions. A gray (Gy) is the unit for measuring the absorbed dose of ionizing radiation. 16 fractions is basically 16 doses which will be given 1 dose per day (Monday- Friday) for 16 days.


If I have emailed you, you are familiar with my email signatures (I have two different ones because they were both so good and could not just choose one, so one is sent from my phone and one from my laptop). I leave you with these:

"Peace is the deliberate adjustment of my life to the will of God." ~Anonymous

"Though He slay me, yet will I trust Him."  ~Job 13:15


Until Next Time~

Shari


Friday, March 6, 2026

Hurry Up and Wait

 Waiting is not easy. I am a woman of action! I like to tackle problems head-on and get things crossed off my list. So, when I received my cancer diagnosis and was told just to wait until my body had healed from surgery before we start any testing or treatment, I struggled to just sit and wait. Personality aside, it is hard to hear that you have breast cancer and then be told we can't do anything about it for a few weeks. Every part of you is screaming to get rid of all the cancer cells, and the last thing you want to do is nothing.

Waiting is not easy, but in those moments of impatience, fear, and uncertainty, the Lord meets us with His still small voice, if we just pause and listen. My last few weeks have been a sobering practice in quietly trusting and waiting. The main thing I have learned is that I am not good at it! This is definitely a weakness that will require discipline and practice to develop. If you are familiar with the Bible at all, you may have heard of Mary and Martha. 

Mary, Martha, and their brother Lazurus, were friends of Jesus. In Luke chapter 10, Jesus is visiting them and Martha is busy hosting, while Mary sits at his feet to listen. Martha complains that Mary isn't helping, but Jesus says Mary choose what is better. Mary is seen as quiet, thoughtful and devoted, while Martha is practical, busy and task-focused. 

I am definitely a Martha, and while I enjoy serving, it can sometimes be a distraction. I stay busy to avoid thinking about serious things, or to keep my mind from wandering. This is not inherently bad, but if I fail to properly deal with thoughts and emotions, rather than keeping them out of my mind through busyness, then I also fail to learn and grow from those things. Additionally, I can be so task-focused (i.e. have to get my to-do list finished), that I fail to see the people around me that are the better option to choose. Somethings do need to get done, but at the end of the day, the people in my life are WAY more important than my to-do list!

A cancer diagnosis has a way of putting life into perspective. I don't want my legacy to be my clean house or manicured lawn. I don't get any brownie points for getting my list completed. I hope the day of my death is still far in the future, but when it does come, I hope I am remembered as someone who loved others and learned to sit quietly at the feet of my Savior. I want to live well today, so that one day I will also die well.

I had my radiology consult today, and it is more of the "hurry up and wait" process. My MRI is scheduled for next week. We had to wait several weeks post-op in order to get good results. I can't start radiation until we get that MRI report. If they find any other evidence of cancer, I may still need additional surgery and radiation cannot start until 8-12 weeks post-op. Additionally, if the scan show anything, chemotherapy will be back on the treatment plan as well. So, today I try to be okay with the waiting, and trust that God will meet me in the waiting.

Until Next Time~

Shari


Thursday, March 5, 2026

Giving and Receiving

 You may have heard it said that it is more blessed to give than to receive, but is it?

We heard someone say that public speaking is people's number one fear, apparently a more common fear than death. So people would rather be the one in the coffin than the one giving the eulogy! I have never fact-checked this, but it is a funny reminder of how quirky humans can be.

I have just finished rereading a couple of books that are wonderfully practical if you want to be a good friend to someone going through something difficult. When I first read these books, I read them more from the perspective of being the friend that would be doing the helping, although I admit that my long journey through suffering has given me a unique perspective.

Now that I am navigating a breast cancer diagnosis and treatment, these books have me looking through a different lens. Thankfully, my treatment plan seems pretty minor compared to what it could be, but a cancer diagnosis is still very hard. I have been wrestling with the role of "giving and receiving" for years, but it has been in my thoughts all the time lately. 

If I am being honest, giving seems better to me, and easier too. I think most would say that they would prefer to be the one serving at or donating to the local food pantry or nursing home, rather than being the one receiving the help. Admitting you need some help can feel like a failure or weakness. Asking for a friend to lend a hand, especially if you are in a situation where you cannot do it for yourself, is very humbling. When you are the giver, there can be a sense of superiority. We help someone else, feel good about ourselves, and might be glad we aren't the one needing the help. When you are the receiver, there can be a loss of autonomy and independence.

I have a community of people who care about me and want to help. Helping others is a wonderful way to show the love of Christ to those who need care. Likewise, learning to let people help is also being Christlike, and a loving way to let people show care and concern for us. Giving people the chance to serve is a gift just like being willing to serve others is. Both the giver and receiver need to grow in grace and humility, always being careful not to overstep (i.e. the giver forcing help upon someone, or the receiver taking advantage of people's generosity). I am currently working through this pride that wants to not let me admit I need help, while honoring the fact that I am introverted and sometimes need space in my suffering. 

My prayer for us all is that we would learn to be faithful in serving while also letting others serve us. Even Jesus, who came to serve and not be served, who washed his disciples' feet, allowed Mary Magdalene to wash his feet with her hair. (Matthew 20:28 and Mark 10:45; John 12:3; John 3:1-17)

I have recommended these books for years, and your friend does not need to be diagnosed with cancer for the practical advice to be valuable! My prayer is that we all learn to be both good givers and receivers. These books can help us navigate being a better friend as we walk together through a hard providence.

  1. Just Show Up: The Dance of Walking Through Suffering Together by Kara Tippetts and Jill Lynn Buteyn
  2. Loving Your Friend Through Cancer: Moving Beyond "I'm Sorry" to Meaningful Support by Marissa Henley


Until Next Time~

Shari

Sunday, February 22, 2026

Live Like You Were Dyin'

 Cancer is a scary word. The first two weeks after I received the phone call letting me know I had breast cancer were very hard, especially before we saw any specialists. You have to actively keep your mind busy, so you don't start going to worst case scenario, but you do start to think about death. Having faith doesn't mean that you are never scared, worried or have doubts, but like in many of the Psalms, we lament our current condition, pour our hearts out to God, and then let Him lift us up and remind us to praise Him in the midst of difficult news.

We are beyond grateful for the Lord's steadfastness in this hard providence and rejoice over all the good reports with my cancer being caught early. Yet I continue to wonder how I might live my life better; with the knowledge that death awaits us all.

In the words of the great philosopher, Tim McGraw, "Someday I hope you get the chance to live like you were dyin'." This year has started off with lots of changes- surgery, new diagnosis, first grandchild, change in job and church and an extended path of treatment ahead. The one common thread so far for me has been to consider more fully what I want to spend the rest of my life doing. 

I have seen this video about Ben Sasse mentioned many times this past week, so I finally watched it. This encapsulates so much of what I have been thinking about. We are all facing death but some people, like Ben, know it is coming very soon. What things are most important? How do we spend our time? Do we focus on things of temporary pleasure or eternal significance?

I haven't even entered the treatment phase for my breast cancer yet, but I already know God is working in my heart to redirect my affections toward Him and get me thinking more about how best to redeem however many more days that He will graciously provide. I pray we all get the chance to live like we were dyin' because we all are.


Until Next Time~

Shari

Thursday, February 19, 2026

Roller Coaster

 Five weeks ago, I had surgery. 

Four weeks ago, I was told I had breast cancer. 

Three weeks ago, the oncologist told us it looked like good news: caught early and favorable tumor markers. We had a plan to get more testing and consultations with a surgeon and radiologist.

Two weeks ago, I began the last two weeks at my job, which I have loved, but I have a higher calling....

Last week, our first grandchild was born, and I will have the privilege of providing childcare for her in just a few short weeks. #bestjobever

Yesterday, my consultation with the surgeon provided more good news. The ultrasound of my lymph nodes looked good, so she will not do a biopsy of the nodes (it has some risk and will not change the game plan). We are waiting for some more tests, but I will be seeing the radiologist soon and have been cleared to begin radiaiton treatments. The surgeon reiterated that my cancer really is the best case scenario. Stage 1, non-aggressive, slow-growing, hormone positive (responds well to medication). She explained that the genetic mutation of the Bard1 gene that I have, put me in the hish-risk group to develop breast cancer, but now that it has happened, the risk of developing a different breast cancer drops to an average risk.

I still have radiation treatments to get through (not sure how long yet), anti-estrogen meds to take (5-10 years), and a lot of monitoring, tests, scans over the next few years, but they do not expect to find any more cancer beyond what was already removed, and put my long term survival rate at 98-99%. 

I am just beyond grateful for that surgery that caught this cancer so early!! Cancer can be so scary, but it sounds more like a short, rough patch instead of the longer "battle" I was gearing up for! Praise God for His mercy in this emotional roller coaster that has been 2026 so far!

Saturday, January 24, 2026

My Eyes Keep Leaking

Wednesday, January 21st at 10:08 am is the exact moment my world (and mind) started spinning. As soon as I heard the surgeon's voice on the phone I knew it was not good news, since there was no reason he would personally be calling. From that moment I was on the phone nearly constantly until almost 4:00pm calling our family and friends. It was exhausting emotionally, and there were so many tears.

Now that we are a couple of days out from that phone call, the tears still keep coming. There is so much grief, shock and uncertainty. I will be doing fine for a few hours, and then a thought sends me spiraling and more tears fall. I am not really much of a crier (or someone who "spirals"). I am definitely someone who wants ALL the information, up front, all at once, and then I am ready to deal with it...so this waiting period between that phone call and the February 4 oncology consultation feels unbearble.

I have had to deal with a lot of medical issues and unwelcome diagnoses, but hearing the word cancer hits you so much differently. Most of us know someone who has had cancer, or maybe you have gone through this journey yourself. Not every cancer diagnosis is the same, which leads to a lot of questions and fear, but because each case is so individual, I have opted to not google much about it besides some basic information. Rest assured, once my doctor has the full picture of my personal case, I will get ALL the details (and share them with you).

While I never thought this blog would become a medical journal to document my cancer journey, I have decided to use it for this purpose for the foreseeable future.

I will be sharing some of these updates on FB, but if you would like to read them all and not miss anything, enter your email over on the right column --> to subscribe and you will be emailed every time I journal some news.

Thank you all, seriously from the bottom of my heart, your response has been overwhelming! I feel loved and cared for and am so incredibly thankful. 💜

Until Next Time
~Shari

Wednesday, January 21, 2026

Being Brave

Last Tuesday, January 13, I underwent a difficult surgery. You know I am usually an over-sharer,  but this surgery seemed too private to share. I am writing to ask for prayer, as things have taken an unexpected and heart-breaking turn. So now I am going to be brave and speak about something that seemed embarassing, but has turned out to be a great blessing.

I am so thankful for God's timing and providential care. My doctor had suggested I consider a breast reduction that could help with my chronic neck and back pain. It took a lot of convincing (almost two years from first mentioning it, to seeking insurance approval). It has been a rough first week of recovery, filled with doubts about if I made the right decision, and then this morning the phone rang...

The surgeon just called to tell me the biopsy report found invasive lobular breast cancer in both breasts. The surgeon said thank God that he did this surgery, as my mammogram did not pick up anything this past September, and that we wouldn't have wanted this to go undetected until next fall.  He believes we caught it early, but there will be testing in my future. My initial oncology consultation is February 4th, but they will get me in sooner if there is a cancellation.

Please pray for me and Chad as we figure out next steps, and pray for our children and family as we all come to grips with this news. We balance this news with the great joy of expecting our first grandchild in the next couple of weeks, and pray for her uneventful and healthy arrival!

I appreciate your fervent prayers on our behalf.

Until Next Time

~Shari


P.S. If you have 12 minutes, this video explains the type of cancer I have, but also shows why it is so hard to find it on mammogram and ultrasound. 

Tuesday, June 3, 2025

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! 

Enjoy!

Tuesday, January 2, 2024

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

Friday, December 29, 2023

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

Wednesday, September 7, 2022

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.

Saturday, May 28, 2022

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!

Monday, February 28, 2022

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

Sunday, January 30, 2022

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


Monday, September 6, 2021

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