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.

Staring At The Glass

Some have called me a pessimist. I, however, prefer to think of myself as a realist. I will admit that if I am asked the age old question, "Is the glass half full or half empty?", my answer would always be the same. Looking at a 16 oz glass with 8 oz of liquid in it, I would say the glass is half empty. Others of you might say that the glass is half full. Realistically, whatever you call it, it is still 8 ounces of liquid in a 16 ounce cup.

Some days we might see that glass and wonder where the missing 8 ounces went. We might reflect back to a time we drank it down. Did we spill it? Waste it? Or was it a refreshing thirst quencher?

We might look at that half empty glass, and realize we started with only 8 ounces even though our travel mug has always held 16 ounces. We might begin to think it seems unfair. Why do others get a full glass, when we only get a measly 8 oz.?

There will also be days that we don't care about how much water we have at all, but are concerned more about the container. One person may have a crystal goblet, and another may have an old travel mug with a broken handle.

On days when we are feeling optimistic, we are aware of that cold 8 fluid ounces of water sitting in our cup, and we feel bad we have so much when others don't have any.

Today, on this Christmas Eve, I sit here looking at my cup, and I am simply grateful. The 8 ounces that I do have are a gift from God, the same way 16 ounces would be, or even an empty glass. It doesn't matter if my glass is big or little, glass or tin. The most important thing is to remember who gave us the gift.

Christmas is the best time to reflect upon God's perfect gift to us-- His son, Jesus Christ. Jesus says, "If anyone thirsts, let him come to me and drink" in John 7:37. I am praying we will all remember that Jesus truly is the reason for the season. I also pray that we are able to be thankful as we gather tonight and tomorrow, perhaps with family or friends, or even as we sit alone. Whether we have 16, 8 or 0 ounces in the glass in front of us, we can and should be thankful for whatever God has provided each of us, being careful not to compare it to what other people have. So this Christmas, lets give thanks to the Lord, for our cup truly does runneth over. Merry Christmas!

Until Next Time~
Shari

*DING*

I recently read the book 12 Ways Your Phone is Changing You by Tony Reinke. Tony examines the ways our smart phones are changing how we behave, communicate and participate with those around us. This book is extremely convicting and eye-opening. He does not take the position that our phones are bad, or using them is evil, but in fact quite the opposite is true. He clearly flushes out the usefulness of our pocket computers. These high tech devices help us to spread the Gospel, be more productive, educate, and much more. Unfortunately, our constant connectedness can distract and distance us from those whom we are closest too. Essentially, the more connected we become the lonelier we feel. Where we used to go to the movies with friends, we now stream movies to our living room.

The book's chapters dig deeper into to each of the 12 ways Tony Reinke sees our phones impacting us individually and as a society. The titles of the chapters give a sneak peek as to what you will find inside:

1. We Are Addicted to Distraction
2. We Ignore Our Flesh and Blood
3. We Crave Immediate Approval
4. We Lose Our Literacy
5. We Feed on the Produced
6. We Become Like What We "Like"
7. We Get Lonely
8. We Get Comfortable in Secret Vices
9. We Lose Meaning
10. We Fear Missing Out
11. We Become Harsh to One Another
12. We Lose Our Place in Time

The book is well researched, and well written. It does not condemn technology, or our use of it. It does, however, point out real and present dangers that we should all be aware of. The book points out our Pavlovian dog response to the buzzes and beeps emanating from our devices. Our phones (and as a result we) are "on" 24/7. We are afraid we will miss something. We enjoy getting "likes". This can all be used in a way that can bring glory to God, but frequently it is used to distract us from our boring lives. It might be an escape for us. Our phones and computers provide an atmosphere in which we can portray our lives as something other than what they truly are. We feel jealousy and discontentment as we think we are truly peering into the lives of our neighbors and friends, but in reality seeing only small glimpses into reality.

Technology is a good thing. It is a gift from God, from whom all knowledge originates. Computers and internet have enabled me and others to blog, to share our stories, and the Gospel with people a world away. We have been given an opportunity to use a new, and advanced medium to reach others we would likely never meet face to face, and because of that, it comes with a great responsibility. We will give account for every idle word we have spoken (or written) one day. The distance the internet creates makes us feel safer to be harsher with people. We say things that we would never say if we were standing in front of a group of people. We watch things that we would never consider watching if it weren't from behind the anonymity and privacy of our own screen. This book gives us reason to pause, consider and evaluate our phone usage.

The book is well worth reading, and although it is written by a Christian author, and has a Christian bent, it's research is solid, and the message behind why we respond the way we do is important to reflect upon. You won't be disappointed, and quite possibly you will have your eyes opened wider, like I did.

Wish you all a Happy Thanksgiving!
Until Next Time~
Shari

ODAAT

I like schedules. Actually, my life is full of lists and schedules. I even make a weekly dinner menu. Order and structure characterize my days, so much so, that some days you will find me doubled over in pain cooking dinner. If the menu says spaghetti on Tuesday, we are eating spaghetti on Tuesday if there is any humanly possible way for me to get it done. Sometimes, Chad comes home from work and just shakes his head in disbelief. "You know that no one else does this, right?" he asks.

Since I like things planned out (no surprises for this girl!) I begin each day looking over the week's activity list. When I was younger and healthier, I always got everything done. Now, I try to save energy for the days that have the most important tasks. The trouble is, ALL the tasks on my list are *important* to me. According to the Meyers-Briggs personality test my kids had me take a few years ago, I am "the duty-fulfiller" type. Basically, this means that I have a list of things that I need to get done each day. I push through to get every last item done, always have, and always......well, actually not anymore. Some days, no matter how hard I push, there are still items left on my to-do list at the end of the day, which tends to leave me feeling like I failed. (Yep, I got issues)

I have always planned my days and weeks far in advance, even down to life's least important tasks. I am a creature of habit. I do laundry on Mondays, clean each level of the house on their specified days, and grocery shop on Thursday mornings. Every chore, and even things like reading or art, are in my calendar in their official time slot. Chad also shakes his head when my phone buzzes every few minutes reminding me to do basically everything. What a glorious time we live in to have smart phones with reminder alarms! I used to write everything on a wall calendar, and use notepads for endless lists.

I have written before about managing expectations. Honestly, I am WAY better at letting others off the hook, giving them grace, and lowering my expectations of them, than I am of myself. I am my own worst enemy. I know that my list doesn't really matter. Although I like structure, I do know that if my laundry doesn't get done until Friday, the world won't fall apart. Honestly, I won't even run out of clean clothes that soon! If my life seems ridiculously organized, all I can say is that I am a LOT more laid back than I was twenty years ago. (Hard to believe, right?) Age, children, marriage, poor health, and most importantly, my faith in Christ have all impacted me in a positive way, and helped me to let go of some things. I have learned to cut myself a little slack. I am still a work in progress.

Lately, each day seems to start differently, unpredictably. I never know how I will feel. New challenges present themselves, and as Chad likes to say, we adapt, improvise, and overcome. I have been made more and more aware of my tendency to want to perfectly perform my (never ending) lists. I am a taskmaster. I place unnecessary burdens upon myself, especially now. There is nothing quite like completing a task, and being able to cross it off my list! I am learning that most of what is on my list is unimportant. I need to prioritize, but I also need to learn to let go. Everything is not of equal importance. It really is okay if the furniture is dusty.

I am trying to take each day as it comes. I can't change how I feel when I wake up every morning, but I can choose how I view each day. I am working to figure out why I am how I am, growth is an important part of life (although I am not a huge fan of change). For now, I am learning to take One Day At A Time (ODAAT). By the grace of God, I am learning to forgive myself, and give myself permission to "fail" at finishing my list. The Lord has been teaching me so much through all these trials, and most recently, He has been gently revealing the heart issues behind my compulsive behavior. My need to do everything on my list is a form of works righteousness. It shows my sinful tendency to want to do something to earn favor, or feel accomplished. It speaks to my trying to control things, which reveals a lack of faith and trust. All my striving to complete a list is simply futility. The good news is that Christ's work was complete. I do not have to contribute anything to my salvation, nor could I add anything to it. Jesus said, "It is finished." I don't need to run myself ragged over a ridiculously long and detailed list of chores. I need only to enter into His rest. I am grateful for God's loving correction, and His grace to live ODAAT.

Until Next Time~
Shari

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