Tuesday, May 14, 2019

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.

Tuesday, March 26, 2019

Ignoring The Warning Signs

Sometimes you know that you have a problem. Maybe you are too busy to deal with it. You might not want to face the problem (denial- it ain't just a river in Egypt!). You could even be dealing with another bigger problem, and choose to ignore the warning signs. I am an endless supply of prayer requests, and am always dealing with multiple issues. Sometimes, it feels like the more I pray for relief, the more new things pop up!

I had been feeling the stomach discomfort, and knew I was taking more NSAIDS recently to help with pain. I have had an ulcer in the past (twice actually) from steroids and ibuprofen usage, so I know what the signs are. I was aware enough that there was a problem, that I started taking over the counter stomach meds, but honestly, I didn't want to think about one more problem.....so I didn't. Sometimes, you ignore the warning signs until you are doubled over in pain after every meal, and it refuses to be ignored any longer.

Doctors now have me on a stronger, prescription medication for a gastric ulcer, and I am adjusting my diet to help also. I was left with no other option, than to accept the fact that I could no longer ignore the symptoms. Choosing to overlook little "problems" can often be life-threatening. An ulcer, if ignored long term, can grow larger until it literally eats a whole in your stomach, and you could die. A medical condition that is very common, and usually benign, over time becomes a very serious issue.

Our lives are all like this. We ignore signs, especially when the problem seems small, and easy to overlook. We convince ourselves it isn't a big deal, or we will deal with it at a more convenient time. Sin is the same way. We can let ourselves off the hook regarding our thoughts, words or deeds. We make excuses or convince ourselves it won't happen again. Eventually, that unchecked sin can becoming life-threatening. The Bible tells us that all of us sin, but did you know that your conscious can become so dull, that you no longer feel the gnawing pain of your sin? Your heart becomes callous, with repeated sin, like hands that are submitted to daily hard work. Eventually it fails to cause us pain any longer, and therefore we fail to take notice and rectify the problem.

Some of you might be tired of my constant reminders of our sin. Our need to repent, and turn to Christ alone for salvation, but what is more loving? Should we let our loved ones just fly passed all the clear warning signs, when we know the bridge is out ahead, and they are heading for disaster? Of course not! If we could help a friend or family member to accept and deal with a difficult issue, before it becomes life-threatening, we most certainly would! God's word is clear that sin will result in death. Not just the physical death that we all with face, but spiritual death- left dead in our sins, being eternally separated from God in hell, where there is no longer any hope for salvation.

Don't ignore that gnawing pain in your gut, my friends. It was put there to awaken you from your spiritual slumber, and cause you to see the deadly consequences of your sin. Go straight the Thy Great Physician, God Himself, in faith, and repent today so your healing may be complete. 💜

Until Next Time~
Shari

Friday, March 15, 2019

Y'all Come Back Now, Ya Hear?

We just got home from Mayo. They repeated two tests yesterday that measure nerve function. Both tests showed stable results with marginal improvement in a couple of the numbers. As it turns out, I didn't get the clear results I was praying for, but that's okay. God did answer prayers for decent weather, safe travels, and I did not have too much pain. (I am worn out though!)

The doctor said we had many options including:
  1. Stop the IVIg infusions, 
  2. Take IVIg plus a 2nd medicine, 
  3. Continue on as is, or 
  4. Switch to something else entirely different. 
Hmmmm....well hey, at least I have choices! Basically, we feel like we are playing pin the tail on the donkey blindfolded! With any disease, it is often difficult to find the correct course of treatment for a patient. It is even more difficult with rare diseases. Many times you just have to make an educated guess, and see if something works.

We discussed all the options, but he doesn't have answers to all the questions I asked. He doesn't know for sure the medicine is doing anything. It might be that I just haven't gotten any worse in the past 6 months. He is "guardedly optimistic" that the medicine may be starting to make a difference. The first signs of this disease began back in 2005. It has been a very slowly progressing disease over 14 years. If the nerve inflammation and scarring is ever going to get any better, it will be a slow recovery process.

We decided to stay on the current course, but with IVIg infusions every 2 weeks, instead of weekly (mostly to give me a little break from the headaches and fatigue). Chad and I are good at making a decision and then sticking to it, so I will do 13 more infusions over the next 26 weeks.

In September, we will repeat all the tests again, and make a new plan.  If things continue to improve, we will adjust treatment as needed. It I am not better, we will stop all medications, wait a year....then, you guessed it, go back to Mayo for testing and a doctor appointment.

I did ask for prayer for clear results. I did get an answer to that prayer, and that answer was very clear, although the results weren't. I like things neat and tidy. I would love to just have all my symptoms packed into a nice little box, and be clearly labeled, but that does not seem to be God's plan. I like to get things done (fast preferably), check them off my list, and move on to the next thing. God, however, has me on the long, winding road, teaching me to sit back, slow down, and enjoy the scenery. I am learning not to take anything for granted. I am also learning to be present in the day. Today I can still get up, enjoy life, spend time doing things I love. I don't know what life will be like 6 or even 12 months from now (or if I will even be around to tell you), but I fully trust God, who is guiding my path. I wish He had me on the expressway, but the back country dirt roads aren't so bad either!

Thank you all for your prayers! I will keep everyone updated on our trips, and test, and everything else! To be continued.....

Until Next Time~
Shari

Sunday, March 3, 2019

Why Me?

Several people over the years have said that I must question why all of this is happening to me. Why I have to suffer. Why I can't seem to catch a break. Why me??

My response has almost always been: "Why not me?"

Honestly, this question has still come to my mind many times. I may not have asked "why me?" in the pity party sense. Instead, I am in awe as I ponder the fate that my sin truly deserves, and yet know I received grace instead. The mere fact that I might enjoy anything in this life, moreover inherit eternal life through Jesus Christ, leaves me speechless.

The lyrics of the hymn How Sweet and Awesome Is This Place  capture this wonder:

...Each of us cry, with thankful tongues,
"Lord, why was I a guest?

"Why was I made to hear Thy voice,
And enter while there's room,
When thousands make a wretched choice, 
And rather starve than come?"


When you let that sink in, you can't help but to ask "Why me?"

I am still doing a study with the book by Jared C Wilson that I mentioned in this post. The chapter this week brought up a story of the author's friend (Richard) who found out he was dying of cancer. During that period, Richard wrote these words in an email to Pastor Wilson:

"I really feel so blessed that God would actually use me at all to attempt to bring Him the glory He so deserves. Why me, brother?"

Wow. I read through that a couple of times. What a marvelous and humble response from someone facing death. I won't presume to know God's plan, but this story hit me like a ton of bricks. My prayers have consistently been that God would strengthen me to suffer well. That I might suffer faithfully in a manner that would bring Him glory in the midst of these trials. So, when I read this story of a dying man questioning why God would graciously choose him to be a part of the bigger picture, it touched me.

The Westminster Shorter Catechism asks:
Q. What is the chief end of man?
A. Man's chief end is to glorify God, and enjoy Him forever.

I want God to be glorified. I know that through every twist and turn in my life, God has been growing me. I am not who I once was. I am also not who I will be. Sanctification is a process, and in some ways I have come a long way, and in other ways I have barely moved.

Life is not easy. Some days lately it seems overwhelming and impossible, in fact. Through all of these trials, God has revealed things in my own heart that are not pleasant. He has chastened and corrected me. He has convicted me of my need to love and serve others. He has humbled me, painfully so, at times. I know more about myself than I used too. I am learning a lot about others as well. God has deepened my faith and my trust in Him.

This week, I find myself echoing that book chapter, "Lord, why me? Why would you use me at all to attempt to bring yourself the glory that you alone deserve?"

As I ponder these things, my heart sings praises to Him. I feel thankful to know that He can (and will) be glorified in the midst of my suffering. He does strengthen and sustain me. He hears my cries, and He replies:

"Why not you?"

I pray you all might be guests with thankful tongues, and not make a wretched choice. May God be glorified through us all!

Until Next Time~
Shari

Thursday, February 28, 2019

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


Monday, February 25, 2019

Is There Something In My Teeth?

Have you ever come home after a day out, and realized you had food in your teeth (or maybe it was toilet paper stuck to your shoe, a spot on your shirt, or something in your nose)?

You immediately start to wonder:
How long it has been there? 
Who saw it? 
Why didn't anyone tell me!?!?! 

You may feel embarrassed or ashamed. It might make you more vigilant on your next outing, so you double check to be sure it doesn't happen again.

This has happened to me. More than once actually. We confidently walk around a party, meet new people, and enjoy the company of old friends, all the while unaware of the leftover meal protruding from our smile. It is blatantly obvious to everyone else around us, yet we remain blissfully ignorant. People might turn away from us, or stop talking to us because they are uncomfortable, offended or grossed out. Some may talk about us to the other party goers. A few may bravely whisper in our ear, and help us avoid further embarrassment.

Once we become aware of the food in our teeth, we would likely hurry to the nearest bathroom, and look into a mirror to examine our teeth.

I was thinking about how this situation is similar to us recognizing our own sin. Or perhaps, our failure to recognize our own sin. We all have sins that we seem unable (unwilling) to see, and yet are on display for all the world to notice. We fail to recognize these sins perhaps because we have hardened our hearts to them, or have excused them as personality traits, or simply bad habits.

Hopefully, we all have friends that would quietly confront the issue with love, rather than walk away and leave us in our current condition. One that would love us enough to overcome their fear of confrontation, talk to us privately, and point us back to Christ in repentance. Matthew 18:15 tells us to do just that.

God's moral laws, the Ten Commandments, act like a mirror for each of us. We look into that mirror, seeing the perfection and holiness of Christ reflected back to us. The mirror shows us our sinfulness; just as the bathroom mirror exposes the specks of food in our teeth.

James 1:23-25 warns us not to just glance into the mirror, then turn, walk away, and promptly forget what we look like. In the same way we would not leave the food in our teeth, and just walk back out of the restroom, and continue to mingle. We need to deal with the problem.

Unlike getting parsley out of our incisors, we cannot simply get all the sin out of our lives. The mirror simply reveals the truth that we all fall far short of God's holy standards. We cannot just "fix" ourselves. However, our good deeds don't earn favor or status in God's kingdom, the way perhaps, a clean smile earns friends at a party.

This quote I just read in the book, The Imperfect Disciple by Jared Wilson, seems to explain this concept fairly well:

"You are more sinful than you realize, but you are also more loved than you know." 

We are hopelessly sinful. The bad news is that we can never be good enough to get to heaven, or earn God's love. The good news is that God so loved the world that He sent his son to die for our sins. God offers us that free gift of grace, through faith in Christ, to all who believe and repent of their sins.

Jesus took our place. He paid the penalty (took our punishment). When we trust in Him alone for our salvation, God sees Christ's perfect reflection when He looks at us, instead of our sinfulness. This is why it is called the "good news". That is what is so amazing about grace, that it is none of us, and all Jesus Christ. (John 3:16; Galatians 3:13-15, 24-26; Romans 5:8, 3:23-25)

Hopefully you have checked the mirror, and don't have anything in your teeth! More importantly, I pray we all look into God's Word, compare ourselves to that standard, and find that we are all lacking. I pray that drives you to Christ, seeking His forgiveness, and placing your trust in him alone.

Until Next Time~
Shari

P.S. The Imperfect Disciple: Grace for People Who Can't Get Their Act Together by Jared C. Wilson, is a wonderful book full of grace for those of us who struggle to see past our sins, and a beautiful reminder of Christ's finished work.



Friday, February 8, 2019

What is Truth?

My post yesterday mentioned believing what is true, and holding firmly to that in the storm. So with that in mind, combined with a movie I watched last week (the name of which I cannot remember....which actually goes along with the basis of the movie. I am notoriously bad at remembering names of actors, movie titles, and even plots), I decided to dig into the topic of "truth" today.

The movie I am referring to had a murder mystery plot, but the purpose of the film was to point out that our memories, as well as the things we see or hear (or think we saw or heard) can never be proven or trusted. Our memories, feelings and thoughts betray us. The main character actually started to believe he had committed the murder, and was having flashbacks of doing it. Turns out the death was just an accident and the movie ends without more explanation. The movie concluded that because we can never be sure that we know or remember things accurately, then there is no real truth.

Now this idea isn't new. I mean it is "new" in the last hundred years, but not new in today's culture. We hear terms like "your truth" or "my truth" suggesting that each person decides what is true, but that contradicts the very definition of truth. Instead, that redefines the word. The 1828 Webster's Dictionary uses words like "fact" "reality" and "correctness" to define the word truth. It goes on to quote Scripture verses about God's Word being truth. The latest Merriam-Webster Dictionary includes terms like "an idea accepted as true" or "sincerity" which is vastly different than fact. We can be sincere in our beliefs, or accept an idea and true, and still be wrong. Sincerely wrong. Believing something doesn't make it true.

Perhaps part of the problem is our own insecurity. Can you imagine thinking that everyone else somehow has the answers, and you don't? Have you ever felt like you walked into a room where everyone else knows the agenda, and you somehow missed the memo? I know I have! We like the sound of having "our truth" and "your truth" to some degree because we can feel better about ourselves. No one can question what we believe if truth is individual. We never have to feel stupid or uneducated.

Pride plays a role here too. We feel comfortable in letting people live their lives the way they want (even if we aren't comfortable with it). Who are we to judge? If each person sets their own truth, then we are always right, even if we all disagree, and who doesn't love to be right? We also never have to take someone else's opinion of our life choices to heart. No guilt or worry, because we can both be right.

All of this also plays in to our need to feel loved and accepted. We don't want to be seen as a prude or a bigot. We want others to like us, and don't want to confront their beliefs. We can easily start to believe truth is relative, because it is hard to stand against the rushing tide. To be the lone voice holding fast in a swift current is difficult at best. As a nation many years ago it was the minority of voices pushing the boundaries. As those voices grew louder, we turned away, not dealing with the hardship. We slow give in to the changing tide, instead of dissenting. That is not to say that no one held firmly to truth and stood up to society's changes, but the majority started to buy into it. Somehow during this rise of postmodern thought, we agreed to accept that truth is relative, which lets us off the hook of answering the tough questions about right and wrong, truth and falsity.

None of us can trust our feelings, thoughts or memories, which is exactly why we need that compass of truth to keep our ships heading due north, or we will stray off course. I won't get political here, but I think we can see the country has shifted sharply in the last 100 years. Things once thought to be vulgar or taboo, are streaming constantly on TVs and social media feeds. The meanings of words have changed and morphed. Truth is harder to discern. We are a nation sharply divided. One whose compass has broken, and we have indeed drifted far off course. Although we are okay with the idea of no "absolute truth", I think that the constant stream of heated, divisive conversations on social media prove otherwise. We really like the idea of not being wrong, and we really want what we believe to be the real truth. I think this is the root of all the hate speech I read when two sides of any issue try to talk. They think yelling their beliefs louder will result in it being true. We are fine when "your truth" doesn't impact our lives, at which point we want "our truth" to be the rule.

One thing I do agree with from the movie is that our feelings and thoughts can't be trusted. The truth is that our hearts do deceive us (Jeremiah 17:9). How do I know that this is true? God's Word says so.  My believing God's Word doesn't make it true. His Word is not true because I believe it is, it is true because God IS truth. The definition of truth comes from God. He is the Way, the Truth, and the Life (John 14:6). His Word is given to us as our compass. It leads us to true magnetic north and keeps us on course.

Likewise, if you don't believe God's Word is true, it doesn't negate the fact that it is indeed true. The question really becomes "if you believed something that wasn't true, would you want to know?" Seriously, are you happy to remain on your current course, with a compass that doesn't actually point north, but merely confirms north is the direction "your truth" tells you it is? Many times the truth is hard to hear, even harder to believe, especially when it challenges our choices and worldview, but choosing to just ignore it is a recipe for disaster. My prayer for all of us is to be teachable, truly wanting to know any area of our lives where we believe wrongly about something. Check your compass today, and make absolutely sure that it is pointing you true north, to the One who is The Truth.

Until Next Time~
Shari