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

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.

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

Dark Circles

Have you ever had that feeling like you are about to pass out? Dark circles envelop your vision, blackness closing in. This seems like a decent analogy of my life currently. Darkness seems overwhelming at times, closing in from every side. I feel like I might "pass out" as I lose the light in my vision. The last several years have been difficult (that might be putting it mildly), but this past year has definitely hit an all time low. My health has continued to decline and the accompanying chronic pain has been overwhelming. Medical treatments and side effects are exhausting. I have spent a LOT of time sitting with a heating pad or ice pack, and zoning out in front of a screen. I haven't done much art, or cleaning, or even leaving the house. I have missed a lot of Sunday morning worship services. Due to my accessibility needs, we switched churches in December of 2017, which combined with my recent spotty attendance record, has made it difficult for me to feel connected. I have lost friends, been unable to do things I love, and gained weight. Any one of these things would be enough to deal with, but all together, I feel alone and surround with darkness.

Disability and suffering are often isolating. When I do go out, I put on a smile, and try not to turn every conversation into a gripe fest of how bad I feel. So instead, I try to love others and ask about their lives. Listening is one of the first things I have learned this past year. As I have spent more and more time alone, stuck in the house, and wishing for someone to talk to, I have learned how valuable a listening ear is! In today's electronic world, it is a rarity to find someone that stops, makes eye contact, and actually pays attention. I am SO very thankful for those friends I have that are willing to do this, and hope I can do the same for others.

I have also learned some things (of the not so pleasant variety) about myself. I have put too much worth on friendships, letting hurt creep in when those relationships fell apart. I am reminded of my own words about managing my expectations of others. In truth, I should be seeking Christ. Wanting a deeper fellowship with Him. Going to Him in prayer, and with my concerns, worries, and pain. Not that friends aren't deeply valued! A good friend is a rare jewel. They can rebuke and encourage us. They help carry our burdens. But we must also remember they are sinful humans, just like us. Christ alone is the "friend that sticks closer than a brother" (Proverbs 18:24), and to Him alone should we look to truly fulfill that need for acceptance and love.

Besides feeling super crummy, gaining back a lot of the weight I lost back in 2013-2014 has added to my frustration and encroaching depression. This issue has also got me thinking about my beliefs on weight, self image, and food. Yes, I do feel worse when my clothes don't fit. My blood pressure is high again, so there is a real health concern, but if we get down to the brass tacks, I want to be thin to "look good." Our culture pushes this agenda, and I have bought in hook, line, and sinker!

I have been going through the book Idols of the Heart by Elyse Fitzpatrick again, and there are plenty of idols coming out of my little "idol making factory" as John Calvin describes our hearts. One more lesson to be learned in all of this darkness.

We want what we want. What we shouldn't have for reasons perhaps unknown to us. We desire that which we think will make us happy: friends, thin bodies, perfect health, no pain, etc. The list goes on and on seemingly forever. It is very difficult, if not impossible, to bear up under the weight of all these things. The dark circle surround us, and just like my analogy about the feeling of passing out, just about the time we think our entire vision is going to go black, and we will most definitely pass out, a tiny light in the center of our vision starts to shines through. Slowly, the center light grows, and chases back the black circle that had threatened to overtake us.

In those moments, I am reminded of 1 Corinthians 4:8-9

"We are afflicted in every way, but not crushed; 

perplexed, but not driven to despair; 

persecuted, but not forsaken; 

struck down, but not destroyed"

This is where my hope is found, in Christ, the Light of the World. Just when I think I can't take any more, as I lie alone begging for mercy, wondering if the pain will ever end, asking Him if He is listening, if He even cares, that small dot of light emerges in the distance. As I begin to focus on it, it grows larger and brighter. That is not because God finally showed up, or decided to intervene, but simply because I wasn't focused on the light. I began to focus on the overwhelming blackness. I started to believe He doesn't care, or isn't listening. I begin to believe it will never end. I start to focus on my symptoms and circumstances, and lose sight of my Savior, and His truth. But then, I hear God's still small voice prompting me to remember what is true. God tells us many places in His Word that He will not leave us or forsake us. That is the truth. God never left me, his Light was there all along, I just chose to focus on the darkness. I missed His tender mercy in a card from a faithful friend, because I was thinking instead of the friends I lost. I failed to see the simple joy God brought to my days by way of a little 12-lb dog, and looked only to my feelings of loneliness.

I am not trying to minimize the struggle. I am suffering. I am miserable. This is all very hard. I know you hurt too. I am simply trying to remind you (and myself) to stop focusing on the black circles closing in around us, and focus on the light instead. Keep your eyes fixed upon Christ! (Hebrews 12:2). Be grateful for the faithful friend, or that tiny rescue dog! That is how we give thanks to God in all circumstances, like Paul tells us in 1 Thessalonians 5:18. We start to change our focus to God's blessings, and stop making the pain and disappointment the center of our world. We aren't thankful for the pain and suffering, but we can be thankful to God, even on the worst of days, for His loving care. 

I am thankful that God has been gently revealing the sin in my heart, and for His forgiveness. I am thankful that I am learning to trust Him more, even on those days when I cry out like the child's father did in Mark 9, "Lord I believe, help my unbelief!" Remember to give thanks for His Son, the Savior of our souls, who also knew the pain of suffering and isolation. The One who suffered all of that in our place. 

We used to joke that the light at the end of the tunnel was a train, and some days it still feels like that! I pray we can all look down that tunnel of blackness, and see a small light in the distance, and then draw near to that Light! Keep searching and clinging to the One who preserves our souls, and I know the darkness will fade, even if the suffering continues. That is the truth for all who are in Christ Jesus! Will you choose to cling to the Light, or continue in the darkness?

Until Next Time~

Shari