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

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

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. 

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

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.

Think Zebras

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

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

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

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

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

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

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

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

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

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

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

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

Additional information about rare diseases here and here.

#zebrastrong 

Until Nest Time~

Shari

Off To A (Not So) Great Start

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

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

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

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

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

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

Until Next Time~

Shari

My Familiar Friend

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

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

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

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

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

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

www.facebook.com/JoniEarecksonTada/posts/6418170734890062 

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

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



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

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

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

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

Thank you all for reading!

Until Next Time~

Shari

When Did I Quit?

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

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

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

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

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

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

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

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

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

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

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

Walking across the floor

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

Until Next Time

~Shari

Counting Our Blessings

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

~Until Next Time

Shari

Undone in Twenty-One

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

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

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

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

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

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

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

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

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

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

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

Until Next Time
~Shari

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

(UN)Happy Valley

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

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

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

I will fear no evil,

for you are with me;

your rod and your staff,

they comfort me.

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

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

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

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

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

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

Until Next Time

~Shari

Who I've Become

If you have met me in the last few years, you might be surprised to learn that I used to be somewhat adventurous. While I was never one to be a thrill seeker, I did frequently hop in the car at the last minute for a road trip, or impromptu outing with the kids. As a child, my mom would drive me into Chicago to the Planetarium (it was free back then) just to buy an ice cream sandwich from the vending machine (She swore that brand was better, and not available locally). I think her crazy ideas like this rubbed off on me!

In fact, if I think back over the years, even though I have always been introverted, there was rarely a day I didn't get out of the house: nature walks, shopping, museums, movies, or just yard work. Slowly over time, as our kids grew up and moved out, and my health declined, getting out of the house seemed less attractive, and more problematic.

Chad and I were talking about this a couple of days ago, and it has been on my mind ever since. I am very content in my day to day life, but my world has definitely shrunk. I routinely go to church on Sunday, and consider it a victory if I have nowhere to go until church the following Sunday. I still love the outdoors, shopping (especially at thrift stores), and even road trips, BUT (and it is a big but), things have just become much more challenging.

I can no longer just wake up and decide to be spontaneous, heading out for the day to a local museum or park like we used to do. For starters, on the rare occasion that I feel well enough to head out for the day, there has to be much more planning. Medications, medical devices, mobility equipment, etc. are part of my daily life. I have to think through the outing to decide what needs may arise. How long will we be gone? How far would I have to walk, or is it wheelchair accessible? Is there van accessible parking? (especially if I am alone, because I frequently get stuck unable to deploy the ramp either because there are not enough handicapped spots, or someone has parked in the access aisle/striped lines) The list is LONG.

Sadly even when we plan the best we can, trips frequently end with an serious increase in pain. Pain rises throughout the day normally, but increased movement and lengthy activities will increase it more rapidly. Sometimes, I do a cost-benefit analysis and decide the trip just isn't worth the pain.

There is usually some stress and anxiety involved in going somewhere unfamiliar also. Many trips end up disappointing when we discover we can't get around by wheelchair, or there are no bathrooms I can use. Even stores with wheelchair accessible entrances often have narrow or blocked aisles, racks that are too close together and inaccessible bathrooms. Besides being more physically difficult to navigate, it is mentally draining for me as well. I struggle with feeling unwelcome and like I am constantly in other people's way (some of this is my own insecurity, but also because people will literally say it out loud).

When I do have a "good day" it just seems easier to stay home, where it is comfy and Chad has made it all very accessible to me. I can keep myself occupied with crafts, jigsaw puzzles, puppy cuddles, reading and many other favorite activities within my home. Easier for sure, and it makes me happy 😊

Sometimes though, I do miss going out. Frankly, I don't often visit a clothing store to feel the fabrics, browse clearance racks, and try things on just for fun anymore. Having the endurance to do all of that is rare at this point. (even getting my leg brace off and on is quite the workout. The struggle is real, people!) To some degree, my low pain level days seem wasted by going out and struggling to do things that used to be easy and enjoyable....so I just stay home, and use that energy on something that truly is enjoyable.

A little over 10 years ago, when I was healing from the life changing surgery on my left leg, I would have never dreamed that I would become a hermit! I have read about disabilities being isolating, and families with special needs children feeling alone, but didn't really understand why, until now.

I am very thankful that God has given me a contented heart. The introversion I once saw as a huge hindrance, I now see as a true blessing. I don't need a lot of activities or people to have a pleasant day. Seeing a dear friend, talking with family, or keeping busy at home are all real treats. I do know that there are plenty of people in the disability/special needs community who DO need more human interaction. Extroverts are not immune to medical issues, and while I am okay being more isolated than I once was, some people are struggling with loneliness and depression.

Honestly, this whole issue continues to be a struggle in my marriage. Chad is way more social and adventurous than I am anyways. I don't want him to be miserable never going anywhere, and he doesn't want to make me go somewhere knowing I will be in more pain. We run through ideas, evaluate how I feel, imagine how draining it will be and decide if it is worth it or not. I do more with him and for him than I would ever do on my own. Some days I push myself over that hurdle, get out and enjoy the day with my husband. Sometimes it isn't even as hard as I imagined it would be!

This unexpected change in my life has been a slow, sanctifying process. I have learned to be truly content, needing little fanfare to keep me entertained. I appreciate the little things in life more. I appreciate friends who are willing to drive to my house for a visit. Maybe you are able to visit a neighbor or friends who is going through something right now and could use an encouraging word, listening ear, or a push to get out of the house. (Don't push too hard, just offer!)

I am thankful that God has given scientific and technological knowledge to many individuals who bring us new innovations (like the internet), and all the good things that come from that to help us daily. There has never been an easier time to stay home and shop from the comfort of your couch! I am beyond grateful for a Savior, who is ever by my side, good day or bad. Maybe you could bring His word to someone who needs it today!

Until Next Time~
Shari

Course Correction

I am not a sailor, although I did serve in the US Coast Guard Reserves. However, I do know that you need to be able to set a course and use a compass to stay on your heading. When you are on any kind of journey, it is important to know where you are going, and be able to follow directions to get there. Google tells me that being just 1 degree off course will cause you to miss your destination by 1 mile for every 60 miles you travel. Over the span of our lifetime, if we remain just 1 degree off course, the results could be disastrous!

Those of you who have followed my blog, know we have had a rough couple of years. (That may be a bit of an understatement!) My continuing health issues and physical needs have involved some large financial expenses. We recently experienced another unexpected financial setback. This week's experience has caused me to check my compass and realize that I had subtly and unintentionally drifted off course.

I dislike change, love to plan, like to be aware of what lies ahead, and feel more secure with a cushion in my savings account. Security is my love language! While none of these things is inherently wrong, it can be easy to get off course. I trust God, and know He provides all that we have. I know He has lovingly guided us through every difficult valley, and upheld us on every joyful mountain top. He alone gives, and He alone takes away.

So, when this unplanned financial issue came up a few days ago, it brought up a lot of thoughts and feelings. Fear, lack of security, frustration, and worry were quick to rear their ugly heads. I came to realize that my compass was no longer set to true north. My eyes were not fixed upon Christ, but were fixed upon my own plan to feel secure. My need to plan and control had failed me, and I sat wondering how easily I had drifted from my course (again).

Sitting atop my metaphorical boat, polishing it to a high gloss shine, I failed to make sure I was sailing a straight and sure course. I am thankful that God uses situations in our life to gently remind us to keep our eyes on the right thing: my Savior, Jesus Christ. It is not my planning, or savings account, or health that make me feel secure. Only in Christ is my future secure, and He alone is my only hope in life and death. I am very thankful for this little course correction this week, that I might avoid a more disastrous result down the road. I am in constant need of these reminders to keep my compass pointed north!

Have you checked your compass recently? Have you been drifting? Today is a great day to adjust your course, avoiding serious consequences, and place your faith in the One who can bring you safely to your destination.

Until Next Time~
Shari

...and After

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

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

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

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

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

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

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

Thanks for following along on my journey with me!

~Until Next Time
Shari

Before...

Greetings from Minnesota!

My husband, Chad, and I came to Duluth for a couple days to relax before heading back to Mayo Clinic to repeat all the testing and see the neurologist before heading home. It has been seven months since I was here last time, and over a year since we first found out the proper diagnosis.

We drove all day today, and will have 3 days to enjoy Duluth and the surrounding areas, before driving south to Rochester on Tuesday. Tomorrow we plan to head up north to Grand Marais, to spend some time outdoors. Sunday and Monday we will be attending church here in Duluth, and checking out the local breweries of course! SO very thankful to have my new power chair for this trip. It was great today to cruise along the lake outside our hotel, and even raise up to sit at a high top table at the bar.

I will be doing three tests before I see the doctor. Each test checks the function of my nervous system in different ways. I would ask for prayer starting at lunch time Tuesday through Wednesday afternoon. There will be an extended period without any form of pain medication, not even a baby aspirin! For someone like me that needs around the clock pain control, this will be a rough day, especially with the tests themselves adding to the pain.

Once all the tests are completed, we will meet with my Dr Dyck again to discuss our treatment plan going forward. I believe we will be taking a one year break, and then compare that to this past year with the IVIg infusions. I do believe I am worse today when compared to a year ago before we started the infusions, but the tests will be definitive. It is hard to know just how much worse I might have been without doing the infusions this past year, so taking a long break and comparing the two outcomes is about the only way to truly evaluate.

Please pray for wisdom to choose a treatment plan, as well as stamina to endure the testing. I will update everyone in a few days when we wrap up our visit. Thank you all for your encouragement and prayers.

~Until Next Time
Shari

Who'd A Thunk it?

Tens years ago today, September 18th, 2009, on an early Friday morning, we were heading to Northwestern Hospital in Chicago for me to have surgery. On June 25th, an MRI showed what the radiologist believed was a nerve sheath tumor. I was told it would need to be removed. I knew the tumor was long, estimated at 5.5" along the femoral nerve, beginning near my spine, and traveling along the nerve towards my leg. They weren't sure if it was cancerous or benign. I was told there were only two options:

1. The tumor could be a schwannoma which would mean the tumor was on the surface of the nerve. This would mean they could possibly just peel the tumor off the nerve, and there would be no lasting damage, although it still was a possibility.
2. The tumor could be neurofibroma which would mean that it grew through the nerve, and thus not something that could be removed without removing a section of the nerve. This would possibly result in significant disability.

A team of 3 surgeons was assembled: 

• A neurosurgeon would inspect my spine and be present in case there was any evidence the tumor was growing on my spinal cord. 
• A general surgeon was there to make the incisions, move all my organs and bowel out of the way, so that the 3rd doc... 
• A plastic surgeon (they are also peripheral nerve surgeons) could access the nerve tumor and remove it. He made the decision to remove 7" of my femoral nerve to get the tumor out. He later said the tumor appeared so intertwined with the nerve he couldn't see the difference in tissue. 

Based on what he saw, he diagnosed this to be a neurofibroma. He also performed a nerve transfer, taking another nerve from a different section of my leg and transplanted it in the gap he had just created.

After the 8 hour surgery, the doctor came out to the waiting room to tell my family the news. 

I don't remember very much that day. Spending 8 hours on general anesthesia and then pain meds (LOTS of pain meds) tend to wipe your memory. I do remember waking up at some point late in the evening, and my mom blurting out that they removed the nerve and I may never walk again. I remember starting to cry as I heard Chad tell her that they had decided they were going to wait to tell me that. (She wasn't great at keeping a secret haha) I quickly dozed back off, and remember bits of time from the overnight hours. 

My daughter decided she would be the one to sleep in my room that night, because she is a helper and was worried about me. Mostly I remember waking up in the middle of the night, and realizing that my "dead" leg had slid off the mattress, and I couldn't move it to get it back on the bed. I spent about 20 minutes trying to wake my daughter up to help me, before pushing the nurse button. (Both of my kids, and my husband truly can sleep through ANYTHING!)

Ten years ago today, my life changed forever. Sometimes I can hardly remember when I could walk about freely. This date will probably always stick in my mind, since it was a major turning point in my life. It ranks up there with our first visit to Mayo last year when we found out that I never had a tumor, it was all part of my current diagnosis CIDP. 

If there is anything I have learned in all of this, it is that you never know what tomorrow holds. Even when you think you know, you think it have it figured out, you have adapted and accepted the reality of your situation, and then BAM! you get side swiped with different news that contradicts what you knew.

The one thing that hasn't changed in all of this is God. He is the same yesterday, today and forever (Hebrews 13:8). He was also not blind-sided by any of this, even if I was. He is sovereign, which means He controls all, knows all, sees all. If He is not in control of everything, He is not sovereign, by the word's very definition. He either controls everything, or He controls nothing.

God has not changed through the last ten years, but I have. I have learned more about myself: my struggles, selfishness, lack of compassion and patience, along with many other sins. I have learned that my stubbornness is both a blessing and a curse. (It just depends on who you ask! Chad would say it is a bad thing that gets me into trouble, but my doctor prefers to call me tenacious.)

I have learned about others as well. Learned to accept help, to let others show me love through service. I have found wonderful friends, who have faithfully prayed and served me without complaining, showing me God's love in a real, tangible way. 

God taught me to love more deeply, enjoy each day more fully, and is still working in me to develop trust and patience and other good things. He has definitely taught me that we all need to extend more grace to everyone around us. Most of us are trying to do our best, and sometimes we get it wrong. We should not be quick to assume wrong motives, but offer grace, grace and more grace.

This day, ten years ago, was a very rough day. I pray that I never go through a surgery that intensive or painful again. I am beyond grateful for all I have learned on my journey. I am excited to see what God has in store for the coming years, should He see fit to bless me with more, but for today I am content with where I am. I will try to stay present in today, because I know He isn't finished with me yet. There is still more learning and growing to do!

Until Next Time~

Shari

The Heavy Weight of Scales

Once upon a time, I lived an active lifestyle: biking, running, walking, hiking, rock climbing, swimming, kayaking, the list goes on and on. I did all of our yard work, and helped shovel snow. I did all the shopping, and errands, and was always on the move. I have always tried to eat fairly healthy, not really denying myself any guilty pleasures, but always being careful not to over do it. Both of my parents were overweight all of their adult life, and genetically I am very similar. I have always had to be aware of what I eat, how much I eat, and how many calories I burn, and even then, I could still gain a couple pounds very easily.

The older we get, our metabolisms naturally slow, and weight loss does becomes more difficult. Genetics play a huge role in metabolism, and it is difficult (but not impossible) to overcome that genetic predisposition.

As you know, I am not as active as I once was. I have trouble walking even short distances. Chronic pain and arthritis keep me from doing much with my upper body also, so I do a lot more sitting than I once did. I have read many studies showing that "sitting is the new smoking", and if that is the case, I have a 3 pack a day habit!

Lack of real exercise (combined with my genetics and poor food choices) are causing me some issues.....again. I have been overweight before following my surgery in 2009. I held steady at 122 lbs for a few years, following a strict paleo diet. It was hard, very hard at times, especially when we were away from home, but I can be very disciplined when I put my mind to it!

Last year, my cardiologist told me to start adding some whole grains to my diet for heart health. I had already been slipping a little, because eating a strict paleo diet requires fresh ingredients, lots of washing and chopping and cooking. I was feeling worse, living with daily intense pain. I was having more difficulties doing my shopping, and stopped going to so many stores for fresh foods every few days. Cooking complicated recipes became too much on some days. The changes were small at first, and I rationalized that "it wouldn't hurt just this once" to eat something unhealthy. It wasn't long before "adding whole grains to my diet" just became "let's have a bowl of ice cream after dinner".

I convinced myself that I would work harder tomorrow. I rationalized that I was still eating more healthy food than bad, and it wasn't necessary to deprive myself of yummy treats. Now, 30 lbs later, I am nearing that weight I was back in 2012 when I started the paleo journey. My blood pressure is elevated again, and I am on medication for that. My blood sugar is out of whack frequently, and I am having digestive troubles again.

Anyone who has struggled with food, understands the mental games we play with ourselves. We promise ourselves it will be "just a little bit" or "just this once". The diet will start (over again) on Monday. A few pounds heavier, and we think we will cut back for a few days, or increase activity, and the weight will leave again....but we keep on doing the things we hate and having "just a little bit more." I have gained 30 lbs. The scale doesn't lie.

We play similar mental games to convince ourselves we are "good people." Sure, we have done some bad things (not too bad), said something we shouldn't have (not as bad as what other people say though), or thought things that aren't kind (but didn't actually act upon them). We add up all our good deeds on one side of the scale, and hope it outweighs the pile of bad things on the other side. The trouble is, that the scale doesn't lie, even if we try to convince ourselves.

The truth is that every thought, word, and deed is tainted with sin. The scale shows the truth, and there is no hiding from it when we step on. Hiding my head in the sand, or rationalizing does not change the fact: I am gaining too much weight, and it is not healthy. I am also a sinner, whose sins far outweigh the "good deeds" I have tried to do. Thankfully, Christ has come to take the weight of our sins upon Himself, for all who believe and repent. So, when God weighs our deeds, He will only see Jesus Christ, and His works where ours should be.

He is also here to offer grace, wisdom, and peace to me as I struggle to find a way to live as healthy as I can. Diet and exercise advice are all over the map! Having a disability makes exercising much more difficult, and I am still trying to find activities I can safely do without falling, or causing myself too much pain. I am trying to take one day at a time, trying to dig deep and find the discipline to eat right again, but I am also trying to extend grace to myself. I am so thankful to know that in all of my failings, Christ's forgiveness and mercy are never beyond reach.

Until Next Time~
Shari