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

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

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]

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. 

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

OUCH!

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

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

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

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

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

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

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

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

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

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

Until Next Time

~Shari

Counting Our Blessings

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

~Until Next Time

Shari

Didn't See That Coming (or Hear It)

I spent several hours in Chicago yesterday at the Chicago Dizziness & Hearing Center. Dr Hain has been my doctor since 2008, when I first went to him with ringing in my ears and some mild hearing loss. I last went to him in 2013, and wrote about that too.

For newer readers of my blog, you may not realize that I am losing my hearing. I was diagnosed with autoimmune inner ear disease in 2008. I also have tinnitus (a constant, loud symphony of buzzing, humming and some indescribable sounds). Lately, I have had some dizzy spells so violent that I can't remain upright. I figured it was time to touch base with the doctor again. I have been focusing on the more pressing health issues, so this issue tends to take a backseat. Plus, I already know he recommended hearing aids last time, but they aren't cheap, and our insurance coverage for them is subpar.

I had 4 tests done, and then met with the doctor to discuss the results. As expected, my hearing has gotten worse. They are pushing a little harder for me to at least try some hearing aids. Hearing aids will definitely help me hear better, and can help with tuning out the tinnitus too. We will likely get those next year when we are able, when we replenish our medical fund. (I am one expensive disabled wife!)

The unexpected part of my trip yesterday was that one of the test results indicates that I have a small hole in one of the tiny bones in my inner ear. This is called "Superior Semicircular Canal Dehiscence" (SSCD), and of course, it is a rare disease. The test was abnormal enough that the doctor didn't feel like we needed a CT scan to confirm, since I have been through enough. Dr Hain explained that when it gets bad enough, surgery will be necessary. It may take 2 years or 10 years, but it will get worse. Surgery involves seeing a specialist at John Hopkins Medical Center, and drilling into my skull, so let's hope that it takes many years to get that bad. He says I will know it is time for the surgery when I can hear my eyes move back and forth, and it will sound so loud it will drive me crazy (something else to look forward to).

The hole is in one of the semicircular ducts. Both ears are affected.

I have such a great group of prayer warriors who are faithfully praying for me, so I wanted to update you, and ask for continued prayers. I have been listening to the MercyMe  song "Even If" on repeat the last few days. You should have a listen! God is able, and I know He can take this all away, but even if He doesn't, my hope is in Christ alone, and it is well with my soul. 💜

~Until Next Time
Shari

...and After

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

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

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

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

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

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

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

Thanks for following along on my journey with me!

~Until Next Time
Shari

Before...

Greetings from Minnesota!

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

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

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

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

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

~Until Next Time
Shari

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

Next To Last

I like making lists. Actually, I love making lists! Even better than making a list is crossing things off the list as I finish doing them. Somehow I feel a sense of achievement when each list has been completed.

Lists give me a sense of purpose. I have a list for just about everything, and it allows me to schedule my time each day. Sadly, sometimes I make a list just to feel like I have something worth doing. Without my to-do lists, I would waste more time just trying to figure out what to do, and end up doing nothing! Give me lists, or give me death! haha

I have been counting down the days until I would finish my IVIg infusions. While I have not had a list per se, I have had an appointment calendar for the past 11 months. Tomorrow is my next to last infusion. I have the last one in September, and just like that, one year of treatment will be completed. Then we will return to Mayo at the end of October for more testing.

The trouble I have with lists is my tendency to focus on the "doing" of each item. I almost go through life with blinders on, only having eyes to see the next task to complete. I don't stop to think about the process so much, as just getting it done.

My mind runs through the list day and night..... first this, then that, and on the the next. It updates in real time as I get things done. Some days I am thankful my mind works like this. It helps me get out of bed on the most difficult days to fulfill the duties that are on my mental check list. It can also be a very bad thing, however. I have difficulty remembering that the people and experiences in my life are more important than the next item on my to-do list.

On lists like my count down to my last infusion, there comes almost a disappointment when I cross off the last date. Instead of being done with it, I quickly realize the list is never ending. I may have finished the IVIg infusions, but there are still a long list of doctor appointments and testing to come, and maybe even more medications and treatments. I may have cleaned all the areas in the house, bought all the items on the grocery list, or got the yard work done, but by the time I cross that last item off the list, there is a whole new list full of things to do. Another shopping trip, more dirt to clean, more weeds to pull, and my sense of accomplishment is short lived.

The older I get, the more I realize I need to set aside those lists sometimes, and just enjoy the moment. I want to focus on the person I am with, or enjoy the place I am at, instead of thinking about what I need to get done. I am sure I will never be completely without a checklist, since this is the way my mind works, but I do hope God continues to grow me in this area. I need to be reminded that life is not just one long to-do list. Life is meant to be enjoyed! I need to set the paper and pencil down, and remember to lift my eyes and see the blessings all around me.

I have also been convicted lately that my need to complete my list of tasks, many times borders on a mentality that I am earning some kind of reward for my works. This is not true, however, as the Bible is very clear that Jesus did all the work. When He cried out "It is finished" on the cross, that let us know that our performance does nothing to earn salvation. I can cross off as many things on a list as I want, but ultimately none of that matters. What does matter is that Christ came to perfectly fulfill God's law, His list of commandments, and cross them off once for all. He did it all.

I am really not sure how many of you like having lists, or if your minds work in the sequential way mine does, but I really hope every one of you realizes that God alone is the One who completes the work, and frees us to enjoy Him forever. Take a moment today, look up and see all wonderful things that He has given us, especially His Son!

Until Next Time~
Shari

Faith at 49

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

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

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

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

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

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

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

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

Until Next Time~
Shari

Prayer requests:

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

Why Zebras?

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

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

When you hear hoofbeats, think of horses not zebras.

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

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

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

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

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

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

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

Until Next Time~
Shari

Half Time

I contemplated calling this post "Half Way" but with football season upon us, and me sitting here in my New England Patriots sweatshirt today, I figured "Half Time" would be more appropriate. Today's infusion is my half way point. 10 Fridays have passed, and I have 10 more Fridays to go before I repeat the testing at Mayo, and follow up with the neurologist one more time (hopefully the last time).

It has been a difficult 10 weeks. I have been having headaches almost daily, and frequent migraines. We have the infusion rate as low as possible, which makes for long days on Friday. The doctor has added steroids, Benedryl, and Tylenol at the beginning of each infusion to help stop the reactions. So far it has been 10 weeks of side effects with no noticeable benefit. Mayo doctors did tell me that it can take 4-6 months to see any benefit....if there will be any benefit to see.

Right now, I feel like a football team in the locker room at half time, down by 30 points. I am discouraged, but determined. I know there is a long second half ahead, but I am not giving up. There is still a chance, and I have to keep fighting until the last buzzer (ok, honestly, I will admit that I am not sure there is a buzzer at the end of a football game. Am I mixing my sports metaphors again?!?). I may very well be the underdog, and the odds might not be in my favor right now, but there just might be a 4th quarter come back.

You have heard me say it many times, especially in recent months, but I am hanging in there and taking one day at a time. I am managing my expectations. I am keeping my eyes upon Christ, and trusting fully in the fact that God is working in the midst of all of this. He has and will continue to strengthen me, giving me the grace I need for today.

I hope you all had a wonderful Christmas with family and friends. Praying for good health in 2019, but more importantly, I pray that each of you might come to truly know Christ as Lord and Savior.

Bruised

When people ask how they can pray for me, I frequently tell them to pray that I might suffer well. While I would love for God to heal me, to end my pain and suffering, and to make me well, it is not the thing I ask for most often.  No one but God knows how long this season of suffering will last, but I do know that I am called to endure, to continue to praise God, and to bring glory to His name. I want to be a faithful witness. In my weakness and my darkest moments, I cry out to God for strength, grace, and healing, but always end my prayer saying "not my will, but Yours be done."

I was given a book to read recently, "Holding on to Hope: A Pathway through Suffering to the Heart of God" by Nancy Guthrie. If you have gone through a period of suffering, grief, or loss, get this book! She brought up a great point in the book, and it has really stuck with me. She mentioned that we seem to tack on the little phrase "Your will be done" at the end of our prayers, but really should start our prayers in this manner. Imagine if we could really give all our wants and desires over to the Lord and pray "Your will be done", fully trusting He will work all things for our good. Honestly, just go read the book, as I am not doing it any justice here! It is hands-down the best book on suffering I have read, and I have read a LOT of them.

Before I sign off, I figured it is time for some updates. First, I began my weekly IVIg infusions on Friday, October 26th, and will have my 3rd one this Friday. Side effects thus far are fatigue and a mild headache, although last Sunday I had a full blown migraine. Additionally, my veins aren't cooperating, so the doctors are currently deciding if I should have a port put in to enable easy access for the IV. It took 3 attempts last week to get the IV started, and my arms are very bruised, but I know that God does not break a bruised reed.

Hopefully, my body will adjust, and treatment can continue. I am really suffering, and this is the last line of treatment. With my legs, the main symptoms were numbness, weakness, cramping, loss of reflexes and balance issues, but overall not painful. Now that we realize my upper body issues are related to the CIDP also, it has helped me to understand some of my symptoms. While I do have numbness, weakness, and muscle cramping in my arms, I also have constant burning nerve pain in my neck and hands. The most painful aspect has been the random electric shocks that shoot down my arms unexpectedly. I remain cautiously optimistic that this treatment will provide some relief, choosing each day to not linger in the self pity and depression that constantly stalk me. Pray for me to continue to cling to my Savior, and to suffer faithfully. I know He will give me the grace needed to live each day for His glory.

The last thing to tell you about is a letter I recently wrote to the doctor (whom shall be known as "Dr. D") who performed my original surgery. I wrote three pages explaining everything that has transpired since 2009 when he removed the "tumor." I wasn't sure "Dr. D" would even read the letter, remember me, or respond. He was only my doctor for about a year, before we moved on to second and third opinions. Since he is at a teaching hospital, the letter was meant to inform and be used as a learning experience. I was pleasantly surprised to receive a two page hand-written response from "Dr. D" a couple weeks later. His response was sincere and humble. He admitted he should have done better at  following up with me. It was a cathartic thing to do, and helps me to close that chapter and move on. And so, I am moving on...

Until Next Time~
Shari

Good Grief

Grief is a part of life. We grieve the loss of a loved one. We can also grieve the loss of what might have been. The loss of hopes and dreams. We all go through times of grief for things like this. Maybe an injury kept you off the baseball team that you thought would be your future. Maybe it is finding out your child will have special needs, and their future goals may be learning to walk or talk, instead of being the CEO of a fortune 500 as you had hoped. We grieve the dissolution of a marriage, or a child who wanders away from the faith. There are likely hundreds (thousands even) of scenarios that cause us to suffer a loss of some kind, and result in us grieving.

Grief can be necessary and even good. Grief is a natural human emotion, and a process that is as natural as living and dying. Grief can also be bad. It can be a state we enter into and never leave. We can linger too long and let sadness, anger, denial, and bitterness rule our hearts. There is a sinfulness in dwelling in grief too long, however, dealing with grief can be helpful as we come to acceptance, embrace the truth, and move passed it. This is not to say that there is not still a hurt, or a void left behind by the loss, because there frequently will be, especially if our loss is that of a cherished significant other.

Reflecting on all my recent news, I realized all the grieving that I have done, and am still doing. When I first had surgery in September 2009, doctors had hoped that they could remove the tumor from the nerve, and I would not have any ill effects. My surgery that day lasted 8 hours. Just moments after waking up enough to realize where I was, or even who I was, my mother blurted out that the doctors had to remove 7 inches of my femoral nerve. They took a portion of nerve from my inner thigh and tried to reroute it to make my thigh continue to work, but doctors weren't hopeful, and it could take up to 12 months to let the nerve heal and see where we end up. I remember bursting into tears as I heard what I considered to be worst case scenario. I also remember Chad (my husband) saying to my mother that they were going to wait a little while to tell me. My mother was never good at keeping secrets :)

After that surgery, it took me weeks to just sit up in bed for more than a minute or two. I had 3 incisions, each 8-12 inches in length. I had been completely disemboweled during surgery to get to the spine and nerve so they could find the tumor and remove it. It was by far the roughest, most painful thing I have ever been though. Those weeks were very sad, and very difficult. There was a lot of grief and even more tears. Gradually I started to feel better, my stubborn attitude kicked in, and I was determined to get better. The doctors weren't sure I would even be able to walk, but I did. Within a few months I walked without any help. First I used a walker, then a cane, then I just walked, although I wore leg brace the first year that kept my left leg locked in a straight position. I even got back to a fairly fast walking pace, and went on regular walks. I hobbled around on a tennis court, hopping on one good leg and playing couples tennis with some friends of ours. I rock climbed, and kayaked, and got a recumbent bike so I could still ride with my family.

I grieved of what might have been, while realizing there were some things I could never do again, no matter how determined I was. During this time, several friends and family members started jogging (something I had tried for years to get a few of them to do). They really enjoyed the runner's high. Running is something I cannot do ever again. It is not physically possible to run, jump, or kick with no quadriceps muscle. So I grieved.

There were more surgeries to try to return function to my leg. Surgery to help my knee pain that happened because my leg didn't work properly. Surgery because the first surgery caused painful scar tissue to form a neuroma (nerve mass). Surgery to fix a pinched nerve in my right leg because of my change in gait. And there was pain, so much pain. Pain from the surgery. Pain from the resulting issues. Pain from my neck and back that had a previous issue, but were now being contorted in an unnatural position as I tried to swing a dead leg forward and walk. There were plenty of things to grieve. Then, a team of doctors and orthotists at RIC (now Shirley Ryan Abilities Lab) that worked to get me a lighter weight leg brace, that bent went I walked. I kept walking. I worked out. I pushed and pushed, and after sitting on the side lines for 2 years, I joined my family and a group of spectacular friends, and did a 10 mile Tough Mudder obstacle course.

This whole process has been a roller coaster. Lots of waiting and seeing how things will turn out. I have had to grieve, let go of things, evaluate the new circumstances and change course. As Chad likes to say, we "adapt, improvise, and overcome." That is exactly what we have done every step of the way. We cry. We brainstorm a new trajectory, and we move forward. We move through the grief, and work hard not to get stuck in it.

Now we have circled back around. Now as I sit here and type, I am grieving the loss of my "tumor". I have been thinking all this time, that in 2004 when symptoms first appeared, it was due to the tumor they found in 2009. For 14 years, I have been dealing with my "tumor" and all it involves. All the ups and downs, the surgeries, the tears and pain. So, when I first felt symptoms in my right leg in 2011, I felt fear. I was scared that the tumor had returned. I was afraid I would lose the use of my right leg that had been doing most of the work since 2009. Then we learned it was something different. A mystery neurological disease that was unrelated to the rare nerve tumor I had. I grieved some more. It seemed that lightening had struck twice. I now had 2 different problems that both had a very rare occurrence rate, which made finding solutions difficult as no one really knew how to help. I grieved the unknown, and gradual loss of feeling and strength in my "good" leg.

Now in 2018, I am grieving the loss of the "tumor" I thought existed. I now have to wrap my brain around the fact that I have had a progressive neurological disease for 14 years. I never had a tumor, or 2 diagnoses, it's just been one all along. I cannot begin to adequately describe all the poking and prodding, the appointments, testing, waiting, the cost of all of this (emotional, physical and financial). Today I have to grieve my past and my future. I have to deal with the reality of my new diagnosis, which can be a difficult disease. It is rare enough that they cannot really give me a specific prognosis timeline, or treatment plan that works for everyone. They know what has helped some other people, and they hope it will work for me.

Eventually, we all need to move on so we don't get stuck, but today I will just grieve. I know I will continue to fight, it's what I do. I don't take bad news lying down, I get up and consider it a challenge to rise above. Unfortunately, with all the above events, my fight doesn't pack the punch it once did. I grieve that too. Today I will grieve. Tomorrow I will adapt, improvise, and overcome.

With God's grace, we will continue to get through this, one day at at time. He will faithfully strengthen us for each day ahead. Graciously, the Lord has kept Chad and I together as a unit, lock step, through all the ups and downs. I couldn't be more grateful to my Savior for His amazing grace! To God alone be the glory!

What are you grieving today? How will you adapt, improvise, and overcome tomorrow?

Until Next Time~
Shari

Loss of Control

I admit it. I am a control freak. I like all of my ducks in a row.....a perfectly straight row, to be exact. If you knew me 10 years ago, you saw this attribute in full bloom! Health issues, age and a bit of wisdom have helped me learn to let go of a few things, but I will always be a planner. So, when things don't go according to my plan, it gets a bit uncomfortable (frustrating perhaps?) and I get irritated.

Our trip to Mayo Clinic didn't go quite like I expected, in large part because Northwestern Medicine "wasn't playing nice" according to my doctor. We requested ALL of my tissue samples about 6 weeks ago. Since I like to stay on top of things, I called to follow up with them 3 weeks later. They said they never received any request. I personally talked with the pathology department at that point, emailed a new request and paid $40 to overnight the samples to Mayo.

I then made sure the package showed up at Mayo, and got to the right doctor. Last week, it was here and in the right doctor. Then, we show up for our appointments today....

Turns out that Northwestern only sent 3 slides, that were already prepared with stain (doctor said like getting cooked meat instead of raw), instead of ALL the pathology as requested. The doctor then contacted Northwestern to get the remaining tissue, and the hospital refused to send MY tissue samples to Mayo Clinic so that they could properly diagnosis and treat me. Yup, that is irritating. 

As it turns out, the medical team here has seen enough to say with a fair amount of certainty that I do have CIDP and I did not ever have a neurofibroma. (Makes me wonder if this is why Northwestern isn't sharing?) Either way, I will begin treatment of low dose, weekly infusions of IVIG, and give it 4 months to start working. Then we will return to Minnesota again in January (yay) and repeat all the testing to see if there is any difference. 

In the meantime, I can assure you, Northwestern will get tired of hearing from me, until they give me ALL of MY tissues samples! (Chad says I am like a dog with a bone, so I won't let go until I get what I need). Mayo did not want to do a nerve root biopsy, unless they absolutely have too. The biopsy itself takes a big enough piece of nerve for testing, and will likely leave me with an additional neurological deficit. They will stay in touch once they get everything, and make their final, definitive decision on things (thought we would have that today, yep very irritating).

For now, I am still learning that ducks like to get out of line, and no matter how hard I try to keep them together, they frequently fail to comply with my desires. All of this makes me remember that my idea of control is all just an illusion anyways. In all honesty, I have absolutely no ability to make anyone else, or any situation work out according to my plan, and I don't want it to. 

I really do appreciate all of God's gentle (and sometimes not so gentle) reminders that His plan is different and better than mine. I can quit being like the little hamster in a wheel going around in circles trying to get somewhere, and rest in Him, knowing He knows exactly what I need, and exactly when I need it.

So, we will be home tomorrow. I am thankful to not be having surgery. I am grateful for friends and family who pray regularly, and send me a ton of messages of encouragement. Hopefully, I will continue to grow and these changes in my plans will bother me less and less as I get older. Lord, help me to be a more patient patient. One day at a time, right?!

Until Next Time~

Shari

I Was Only Trying To Help

We all know the feeling we have when a dear friend, or beloved family member is hurting, sick, depressed, or grieving. We feel helpless. We want to do something to help. In some ways, we need to do somethings tangible to feel useful, and let them know we love them. I understand this need. I am a "fixer" of problems. A trait perhaps most often considered a "man thing" to do. Over the years, I have learned to become a better listener, without listing out the steps to fix the problem (as I see it). I still find this difficult at times, as my mind works in a logical and sequential manner. I enjoy solving puzzles. When I hear a hurting friend say they are struggling, or they have a problem, I immediately think "well, let's fix the problem, then you can be happier, and in turn that makes me feel good to be useful."

I also have had moments when I am sharing my struggles with someone, and they pounce on me with a list things I can do to fix the problem. Over the years, people have bought me vitamins and supplements (or try to sell their brand to me). Given me medical or cook books. Sent me a mile high stack of articles and emails regarding treatment ideas or research. I am also learning something being on the other side of the "fixer." I am learning grace. To be very honest, my first response is irritation at times. I question why people would think I have not considered any of the options they are suggesting. I am a researcher by nature, and have read books, articles, blog posts, and many medical journals looking for answers over the years. I do eat a diet I feel is healthy for me. Perhaps the worst is my response to my several friends who sell the products they believe in, and have worked for them, when I think "No I don't want to buy product x, or I would have bought it." I feel guilty when people spend money to buy books and supplements, when I know that I will likely toss them. I have learned that people need to feel useful and they show love by trying to help fix the problem, just like I am guilty of doing.

One of the problems with being a "fixer" is that it is a way to make ourselves feel better. We feel the need to help, so we do, but in a way we think might be helpful instead of finding out what would actually be helpful to the individual suffering. I have come to understand that feeling of helplessness. I know that I have so many wonderful friends who care, and truly want to help me. They hurt because I hurt. I have to be gracious in my response to their offer of help, and hopefully they will be gracious in return if I seem to not take their advice. (Let me just take a minute here to ask forgiveness to those I have turned away with an unkind word. I am sorry. I am learning to think before I speak, but I am a sinner. I love you all, and would not want to hurt you, and I know you have a concern for me at the root of your offer.)

You all know how I love an analogy, although sometimes I have trouble thinking of a truly effective image, but I am going to try! I am sure you have been in a grocery store when you realize you are in the way of another shopper. You swerve to be considerate, thinking you will give preference to the other person, and patiently wait. But then, just as you swerve, so does the other shopper! You are both trying to do the "right" thing by helping the other person, but in the process you both have gotten in each other's way again! I have had this happen numerous times, and occasionally we have both then corrected our swerves and again ended up in the way. This situation is uncomfortable, and frequently ends in a nervous smile and one person saying "you go ahead, I won't move."

There is absolutely nothing wrong with wanting to help someone else, but perhaps we should take a minute to listen and identify how we can really be of use. For me, I would prefer someone just say "how can I help?" If I need a ride, or someone to grab a prescription, or mail a package for me, I will ask those whom have offered to help in the ways I need. Some people may not have a tangible way that they need help, maybe a kind word or card, and a listening ear without judgment, is the best "fix" you can give them. Prayer is always a wonderful gift! When we serve others the way they want to be served, instead of in the way we want to serve them, we avoid the nervous smile. We walk together, instead of one of us stepping aside, and telling the other one to go ahead and pass by.

Hopefully, you understand that I am not upset with anyone, I am just trying to say that we could all do a better job of helping the hurting in a way they want/need to be helped, instead of a way that we think will solve the problem. The truth is there are not many things I haven't tried (at least for a time) and the only thing remotely useful thus far has been dietary changes. I lost weight, lowered my cholesterol and blood pressure, but I also continued to worsen with the neurological disease, so clearly it is not a cure-all. I am thankful that your aunt's neighbor, or your cousin's best friend tried a certain diet/vitamin/doctor and got much better. I really am glad to hear that, but I also know that all our bodies are very different, our diagnoses are not the same, and a "one size fits all" approach does not work. When people ask about my dietary changes I tell them, but I do say "it worked for me, but I doubt it will work for everyone." This may be a whole different post, but just the fact they call it "practicing medicine" gives us a glimpse into the difficulty of how different people's bodies respond differently to the same health issue. This is why you can have many people with a herniated disc, and have them all have different outcomes. One gets better, or maybe never has any pain. One needs some therapy, a steroid injection and takes a few months to feel better. Another may need surgery or may be permanently disabled. Doctors tell me half the population would have a herniated disc show up on an MRI, but most never know it because they feel no pain! I am sure you can begin to see the difficulties with treating every person with the same plan!

At the end of the day, hopefully we can all learn to love less selfishly, pray more diligently, and extend grace more consistently, growing more and more each day to reflect Jesus in our lives. I love you all, and am so thankful for your prayers! 💜

Until Next Time~
Shari

Lost In Space

I thought I would try to write a short post, since I have been very wordy recently! I mentioned the sensory and motor nerve issues that were discovered on my tests in yesterday's post. I have been thinking about the doctor explaining this all to us.

Tests showed some motor nerve involvement. This would cause weakness, and muscle atrophy, which is why I fatigue quickly, and can't walk as far as I used to. There is also some demyelination. Myelin is the protective covering over your nerves. It is like the outside plastic sheath on electrical wires. When nerves show signs of demyelination it means that the protective coating is being destroyed by the disease process. Just like a short in an electrical wire, without the coating on the nerves, the signals slow or stop and cannot pass correctly along the nerve, getting lost along the way.

My tests also show sensory nerve damage. In fact, my testing shows that this part is the worst part of my particular case. The doctor said it was one of the worst sensory exams he has done. Sensory nerves help you feel hot or cold. They allow you to feel rough and smooth surfaces. They enable you to walk, and feel the ground under your feet. My legs are numb from my toes to my hips. So much so that I have burned myself in the shower without realizing it. One of the biggest problems with not having much feeling in your limbs, is the difficulty your brain has trying to communicate properly with them. I cannot always tell where my feet are in space. Proprioception is the brain's ability to have a sense of the position of all our body parts as we move. It usually lets us know how hard we are pushing down, or weight bearing.

Because of all of this, I am a bit "lost in space." I start to take a step forward, and instead I lose my balance and end up side-stepping to try to stop from falling (danger Will Robinson!). I end up going in a direction that I did not intend to go, and THAT sums up our life right now. It probably seems like a lot of your lives too. We think we are headed in one direction (at work or home, perhaps medically or relationally), when we realize we have had to do a couple quick side steps to stop from falling. I went to Mayo thinking that we would get answers about our future (learn more about my prognosis), and came home questioning our past.

Proverbs 16:9 reminds us that "The heart of man plans his way, but the Lord establishes his steps." We may feel like we are stumbling around. It may seem like we are falling and side-stepping instead of heading in the direction we should be going, but God has ordained our steps. We may not feel like we are on a straight path. Our idea of straight may be different from the Lord's. God's ways are higher than ours. His purposes mightier. We are to trust in the Lord with all our heart, and not lean on our understanding, but in all our ways acknowledge Him. If we do, He promises us to make our paths straight. (Proverbs 3:5-6)

I have said many, many times that this is not a path I would have ever chosen. I don't think anyone in their right mind would sign up for this, but I believe with all my heart, that I am walking this road for God's glory and my good. I am thankful for His loving discipline, and the Spirit's leading and guiding. I am grateful that He has begun teaching me patience, love and compassion. I am praying that God would graciously open your eyes to His truth, open your heart to His Son, and give you faith to trust that He is making our crooked paths straight.

Until Next Time~
Shari