Updated on November 1, 2015
Do You Wonder Where God Is On the Hard Days?
“I am the good shepherd. The good shepherd lays down his life for the sheep. The hired hand is not the shepherd and does not own the sheep. So when he sees the wolf coming, he abandons the sheep and runs away. Then the wolf attacks the flock and scatters it. The man runs away because he is a hired hand and cares nothing for the sheep” (John 10:11-13).
Do you ever find yourself wondering where God has gone? I admit that sometimes I wonder if He really is beside me.
This illness–it keeps me in a desolate place . . . a place where I cry out and all that comes back to me is my own echo. A place where I feel like I’m under constant attack and facing it all alone. My shield is pretty dinged up and singed.
A place where I feel . . . lost.
I’m hoping you’ll join me over on Rest Ministries to finish this post.
See you there… <3
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Shelly
Updated on October 27, 2015
What PLS Does to Your Voice
Sing to him; yes, sing his praises.
Tell everyone about his wonderful deeds. – 1 Chronicles 16:9
Primary Lateral Sclerosis. I keep saying it out loud, trying to make it sound common and familiar. No big deal.
But it is. It is a humongous deal that usually feels like it’s sitting right on my chest.
PLS has lots of nifty little tricks up its sleeves, but one of the most painful for me is what it is doing to my voice. I was really peeved when my swallowing was affected, but that’s been for so many years now that I’ve made a kind of uncomfortable peace with it. I guess I never realized that my voice was on the table, ya know? It never occurred to me that I could lose the ability to speak or sing.
My voice is changing in noticeable ways now. I’m beginning to realize that maybe it has been for a good while now, but I just never noticed it. Others did. I am hoarse almost constantly. The more tired I become, the worse the halting and slurring gets. It becomes really frustrating to try and talk. And I get tired ridiculously quick. Like within half an hour, sporadic speaking can literally wear me out for the rest of the day.
My singing voice is affected, too, but not in the same ways. I have pitiful breath control. My timing, while I’m singing, feels right on par, but when I play it back, I am always lagging behind, kind of sluggish. I don’t have the control over my voice that I had before. If I hold out a note for more than a few seconds, my voice begins to wobble up and down or in and out, all over the place, no matter how perfectly I focus.
These things are embarrassing for me. I love to talk. I mean like crazy-jump-off-a-bridge-for-it love. And singing. Oh, I can hardly bear to think of losing that. And so, I will keep doing it. I will keep singing with all the feeling that I can muster and pouring that out in song to a God who has that same crazy love for my voice. To Him, I will always sing beautifully, because I am singing in my heart.
And on that note…. my latest offering.
Dear God, please let me never stop singing, even when it’s just a bare whisper. I adore You. In Jesus’ Name, Amen…
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Shelly
Updated on October 21, 2015
Sometimes, It’s Not Going to Get Better
Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits in the place of honor at God’s right hand. Think about the things of heaven, not the things of earth. For you died to this life, and your real life is hidden with Christ in God. – Colossians 3:1-3
I’m sure we’ve all heard the phrase, “It’ll get better.” Probably more times than we care to remember. Usually from people who’ve barely ever even had a hangnail.
This phrase makes me cringe. Do you know why?
Because it’s a lie. It. Is. A. LIE.
Sure, sometimes things get better. You have a 50-50 chance, if you’re lucky, that things will get better.
But sometimes, things don’t get better. Sometimes they stay the same. Often, they get worse.
People die, illnesses get worse, another sickness gets added to our already-overloaded immune system, cancer recurs… the list could go on, but I think you get the point.
I’ve learned one thing that is so, so much more encouraging than these trite statements people pull out in times like these. That encouragement is that good things can be yours, even if things don’t get any better. There is still beauty to be found, even in impossible times like these.
Oh, don’t misunderstand me, you may have to look long. You will have to look hard. But the beauty is there. Sometimes under layers of grime, but it’s there.
If you then, being evil, know how to give good gifts to your children, how much more will your heavenly Father give the Holy Spirit to those who ask Him?” – Luke 11:13
I’m finding that most of the time when I’m missing the beauty, it’s because my angle is all wrong. But God is ever faithful to show it to me when I look.
It really is all about perspective. Perspective right where you are, not if things get better. That’s just a waiting game, and you’ll lose every time. Instead, take a new look at exactly where you are, and ask God to show you the beauty that’s hidden there.
Do it today.
Holy Lord, I pray that each person reading this today will be blessed to see the beauty You have just for them in this moment of ugliness. I pray that they will look, reach out, and trust. Thank You for the beauty from our ashes. In Jesus’ Name, Amen…
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Shelly
Updated on April 30, 2017
Top 5 Questions Asked by People Who Are Hurting
If you look for me wholeheartedly, you will find me. – Jeremiah 29:13
I hear them every day. Heck, most days I’m asking these questions myself! Yes, you read that right… most days. I’m sure you’ve realized by now what a flawed human and slow learner I am.
I’m not bringing these questions to the forefront right now because I suddenly have the answers. I’m just wanting to feel less alone, less strange. I figured maybe you might feel that way, too?
I’m also hoping that if all of us are praying about these hard questions, maybe we’ll begin to talk about them with people who seriously need more understanding of what pain does to your faith.
And so, without further ado, the questions and a few places to start in our search… because, see, I don’t think we should be searching nearly as desperately for answers as we should be for our Father.
What have I done to deserve this?
We think you ought to know, dear brothers and sisters, about the trouble we went through in the province of Asia. We were crushed and overwhelmed beyond our ability to endure, and we thought we would never live through it. In fact, we expected to die. But as a result, we stopped relying on ourselves and learned to rely only on God, who raises the dead. – 2 Corinthians 1:8-9
These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world. – 1 Peter 1:7
Why isn’t God answering my prayers?
Dear friends, don’t be surprised at the fiery trials you are going through, as if something strange were happening to you. Instead, be very glad—for these trials make you partners with Christ in his suffering, so that you will have the wonderful joy of seeing his glory when it is revealed to all the world. – 1 Peter 4:12-13
If the world hates you, remember that it hated me first. The world would love you as one of its own if you belonged to it, but you are no longer part of the world. I chose you to come out of the world, so it hates you. – John 15:18-19
Is this really God’s plan for my life?
For God saved us and called us to live a holy life. He did this, not because we deserved it, but because that was his plan from before the beginning of time—to show us his grace through Christ Jesus. – 2 Timothy 1:9
For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.” – Jeremiah 29:11
Does God still care about me?
So you have not received a spirit that makes you fearful slaves. Instead, you received God’s Spirit when he adopted you as his own children. Now we call him, “Abba, Father.” – Romans 8:15
Long ago the Lord said to Israel:
“I have loved you, my people, with an everlasting love.
With unfailing love I have drawn you to myself.” – Jeremiah 31:3
What is the point of going on like this?
He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us. – 2 Corinthians 1:4
I will bring that group through the fire
and make them pure.
I will refine them like silver
and purify them like gold.
They will call on my name,
and I will answer them.
I will say, ‘These are my people,’
and they will say, ‘The Lord is our God.’” – Zechariah 13:9
This week, let’s get through it together, okay? Let’s search for our Father, instead of empty answers. That relationship, it changes Every. Single. Thing.
Holy God, You entrust us with such an amazing treasure. We are Your church. We carry Your light in these fragile vessels. Let us never get distracted by the questions that have no answers. We want to cling only to You. In Jesus’ Name, Amen…
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Shelly
Updated on October 11, 2015
The Problem with Joy (the turtle)
Like newborn babies, you must crave pure spiritual milk so that you will grow into a full experience of salvation. Cry out for this nourishment, now that you have had a taste of the Lord’s kindness. – 1 Peter 2:2-3
Our sweet Joy turtle is just what her name describes. She’s the one on the top. She brings joy to our family.
But she’s a silly turtle, too, just like her sister, Sammi.
Joy has the opposite problem that Sammi does. She is a teeny baby with a shell still hardening, and yet she wants to act like a full-grown strong turtle.
Joy eschews the tiny baby soft, round pellets and tries to steal Sammi’s big turtle pellets. They’re so hard she has to wait a while before the water softens them enough for her to crumble. Then she eats the crumbs, but the pellet itself is longer than her head, so there’s no getting that puppy down quickly.
Joy chases the fish around the aquarium, trying to catch and eat them. Most of them are bigger than she is and they’re only minnows. If she actually caught one, it would probably drag her around the tank, but you can’t convince her of that.
I admire her spunk. But I also see how I’m like her in the not-so-good ways. When chronic illness invades your life, or at least when it invaded mine, it brought about a complete paring down of my faith. I was laid bare and stripped to basics. I was back to needing milk.
Sometimes I chase minnows around the tank instead of gobbling up the soft little pellets that are nutritionally just right for me. Sometimes I get a mouthful of fin and get dragged around the tank. You?
It’s okay to have to go back to the basics when your world is turned upside down. Let’s not try to grow up too fast. Are you with me?
Father in Heaven, help us to be willing to relearn as our circumstances change. Thank You for loving us through it all. In Jesus’ Name, Amen…
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Shelly
Updated on October 11, 2015
The Problem with Sammi (the turtle)
May God give you more and more grace and peace as you grow in your knowledge of God and Jesus our Lord. – 2 Peter 1:2
So you remember our turtle, Sammi, right? She’s the one on the bottom. Don’t worry, they take turns. She still makes us smile.
She’s a silly turtle, that I know for sure. Do you know what her problem is here lately? She’s growing.
She’s gotten too big to fit in the little cubby she used to sleep in. We had to remove it because she would press herself up against the glass and just stick her tiny tail in it to sleep, instead of finding a better bed that actually fit. She squeezes the sides of her shell into the driftwood log she was once able to travel completely through. It totally stresses her that she no longer fits in the passageways. And she purposely turns completely sideways and forces herself, one wiggle at a time, through the small arches in their bridge, the ones she used to swim right through with no problem.
Sometimes that crazy turtle will even take turns sitting on the smaller one, or trying to ride on the smaller one’s back. It’s hilarious.
We’re convinced she thinks that everything is shrinking, because surely it can’t be her that is getting bigger, right?!
We do that, too, don’t we?
This illness battle we fight every day, it grows us. It really does, and in ways that we might never have imagined. But sometimes all we feel is the stifling. Sometimes all we want to do is try to keep sticking our tiny tails back into the cubby as we’re pressed against the glass. We’re willing to get completely stuck in a sideways position, just to keep our old traditions.
Are you willing to accept that you’ve grown? What new passageways are open to you now?
Dear God, thank You for growing us through the hard times. We could never have repaid the debt Jesus paid. In Jesus’ Name, Amen…
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Shelly
Updated on October 11, 2015
A Giveaway of the “You’re Chronically Ill…” Combo!!
“Keep watch and pray, so that you will not give in to temptation. For the spirit is willing, but the body is weak!” – Matthew 26:41
I’d like to start off with a prayer request, if you’ll indulge me. These past few months have been a tad traumatic for our family. There have been numerous blessings along the way, not the least of which is a team of simply amazing doctors who care. That alone is a priceless gift. I’ll be writing more posts about our journey, I’m sure. But today I simply want to get to the meat of the issue.
What I’m about to say does not affect my IH at all. These are 2 separate issues. I still have IH and it is being controlled beautifully at the moment by my shunt. However, it is NOT what has been causing the other strange issues I’ve dealt with through the years. I do not have a strange presentation of IH. I have two separate and distinctive diseases going on at the same time. What can I say, I’m an over-achiever.
I have a differential diagnosis. It’s just a fancy way of saying, “We’re as certain as we can be, and we’ll let you know if anything changes in the meantime.” My diagnosis is Primary Lateral Sclerosis (PLS). I do not know a ton about it, as i refuse to research the internet and wig myself out any more than I already am. I know a couple of basics about it, which I’ll share here.
PLS is a form of Upper Motor Neuron Disease and is degenerative. There is no cure. It is related to ALS, Lou Gehrig’s Disease, but while that one is muscle wasting and fatal, PLS is not either of those things. I am a little younger than usually seen, but it is not unheard of for someone my age to get this. It is not strange to go for years without diagnosis, either, as there is no definitive test for this, so it is diagnosed mostly by ruling other things out and by witnessing progression.
As you can imagine, this has been rather devastating for my family. We are doing out best to process it slowly and together. We are super aware of God in the center of it all. But it’s still hard. Please pray for us as we process and adjust. <3 Thank you.
————————————————————–
OK!!
Now on to the fun part!! I certainly do NOT believe that this new diagnosis has come to light in the same time frame as my books being published by some strange accident. No, in fact I truly believe this to be a perfect design of the Father’s plan. Having these book launches to focus on and the positive feedback from readers has many times kept me going these past few months.
But you, dear friends, must build each other up in your most holy faith, pray in the power of the Holy Spirit, and await the mercy of our Lord Jesus Christ, who will bring you eternal life. In this way, you will keep yourselves safe in God’s love. – Jude 19-21
I want to do a giveaway here, now that both companion books are published and available!! If you do read one or both, I would greatly appreciate Amazon reviews for them!
The book combination is:
One book contains 30 devotionals for the chronically ill, and the other contains 12 devotionals for those who love us. Each devotional is followed by thought questions.
I will be giving away two sets of books, so you have two chances to win! Just follow the instructions in the form below to enter. This giveaway will last a week, so I hope you’ll enter more than once! Please help me spread the word!
“You’re Chronically Ill…” BooksIf you would like to purchase either book, they can be found here:
“You’re Chronically Ill… So Now What?”
“Your Loved One is Ill… So Now What?”
Lord, I pray that You get these words You gave me into the hands and hearts of those You know need them most. May we always keep looking to You, keep pointing to You. In Jesus’ Name, Amen…
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May God Bless You,
Shelly
Updated on October 8, 2015
When the Anger Calls the Shots
There are “friends” who destroy each other, but a real friend sticks closer than a brother. – Proverbs 18:24
We were watching a TV show tonight and something happened that really made me think.
A young man made a decision to take a job that put him in harm’s way. By the end of the show, of course tragedy had struck. It ended well, but within the hour long program, every single person who loved that brave young man was put in danger in their bid to bring him home safely.
This life of chronic illness, sometimes all it makes me feel is an immense amount of anger. I become so frustrated with the things my body will no longer do. I feel so much anger at how much pain I’m supposed to endure. And oh how the anger boils when I think about how much I have lost.
Sometimes it boils and boils until I push myself purposely past my limits. I guess it’s a mix between punishing my body and testing to be sure things are still real. I guess there’s no way to explain it, but I bet you don’t need me to if you are also chronically ill.
Photo by madstreetz 
Sometimes the anger morphs into a despair that has limitless depths. It’s all too easy to fall into depression and all of it’s self-destructive trappings if you let the anger seethe long enough.
So here’s what the television show taught me. These times that we put our physical or emotional selves in danger, no matter the reason, those who love us waltz right in after us, every single time.
The people who love you (and I hope you have me on that list) strap on their helmets and grab their tools and race right into the fire to find us. They don’t even hesitate. There’s a beautiful thing about that kind of love. It’s sacrificial. It’s crazy brave. And it’s no-hold-barred forever.
As I watched last night’s show, I reflected on the fact that the young man in danger never would have knowingly put those he loved in that position. He would, in fact, have walked through coals to keep them safe. And yet, here they were, each and every one of them, trapped in that powerful situation right along with him. And there’s no where else they’d have wanted to be. Until they brought him home, they had no real home to return to.
Do you remember that you are someone’s home, Dear One? You are their reason for being crazy brave. You are a part of mine, too.
Will you do me a favor? Will you reach out to one of us the next time you’re about to allow anger and frustration to take hold and demand action? Would you ask for help from one of us the next time you’re in the grasp of depression and despair?
Cause we’re coming. We’re strapping and grabbing and racing right for you. Not out of obligation. Out of our need for you. Our love for you. The fact that the light goes out without you here.
Heavenly King, please be with the beautiful soul reading this right now. Please grant peace and calm and comfort. Please let them know that they are seen, they are loved, and they are oh-so-needed. In Jesus’ Name, Amen…
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May God Bless You,
Shelly
Updated on October 7, 2015
Look, Mom!
Serve only the Lord your God and fear him alone. Obey his commands, listen to his voice, and cling to him. – Deuteronomy 13:4
When I was growing up, it was the height of pride if you could ride your bike without using your hands on the handlebars.
“Look, Mom, no hands!!”
Weren’t we big and brave and oh-so-independent?!
In this life we live, I’ve come to see that those things aren’t what matters. Not at all. This life requires that we cling to God, with both hands.
So today I’m giving up on big. I’m kicking brave to the curb. Independence, what’s that?
“Look, Dad, both hands!”
Holy Lord, we are clinging to You and only You. Please wrap tight around us and never let go. In Jesus’ Name, Amen…
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May God Bless You,
Shelly
Updated on October 5, 2015
Have You Had Doctors That Seem More Like the Enemy?
“This is how we know that we belong to the truth and how we set our hearts at rest in His presence: If our hearts condemn us, we know that God is greater than our hearts, and He knows everything. Dear friends, if our hearts do not condemn us, we have confidence before God” (1 John 3:19-21).
There comes a time in every war when some soldiers will come face to face with a terror they should never encounter. The soldier sharing their foxhole, laughing at a joke over chow, the one who is maybe even their commanding officer–turns the weapons onto them. No soldier should carry the added weight of an enemy in the same uniform.
If you’ve suffered invisible illness for any length of time, you have faced friendly fire from the medical profession. They are supposed to be on your side. In fact, they should be helping or even saving. Nodding in empathy seems the least they could do for one of their own.
We should be on the same side, but we’re not always…..
This is me, inviting you to hop over to Rest Ministries
to finish this post. Make yourself at home while you’re there.
I have! 🙂
See you there!
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May God Bless You,
Shelly
