Uncertainty in Fibromyalgia and Chronic Illness

Today we have a wonderful and eye opening post from Cassie Creley.

Cassie Creley lives in the Pacific Northwest and loves writing. Dealing with multiple health conditions including cancer, fibromyalgia, Dysautonomia, and asthma have taught her that God’s joy is available even in our worse struggles. She blogs about creativity, faith, and living with chronic illness at http://cassiecreley.com.

 

 

You would expect a diagnosis to bring some certainty to your life. But when the diagnosis you receive is for a chronic illness that is currently incurable, that is not often the case. It took me some time to realize this. At first, I was blindsided by the amount of uncertainty that took up residence in my life due to my health.

 

Being diagnosed with a chronic illness puts us in a constant state of uncertainty. This uncertainty is one of the unexpected and most difficult side effects I’ve been dealing with since being diagnosed with fibromyalgia. Before getting diagnosed, as my health declined, there was always the assumption in the back of my mind that things would get better, I would get well, and life would continue as normal. But the diagnoses have just kept coming in the last two years: thyroid cancer, Dysautonomia, CFIDS, in addition to the asthma and allergies I was diagnosed with early on in life.

 

Unless you’ve experienced fibromyalgia, Dysautonomia, or other chronic illnesses, it’s hard to imagine the daily impact. I find myself wishing someone had warned me, which is just the same as wishing there was no such thing as uncertainty!

 

My body and my mind have become sources of uncertainty. I’m normally a very organized and dependable person. I could be counted on to show up when I said I would, to have a project done by deadline. Now, I often have to cancel last minute because there’s no telling when my body will suddenly decide it’s done for the day. I also used to thrive on having a schedule and routine. My symptoms and lack of energy throw my entire day into chaos, making it nearly impossible to predict when I’ll be able to accomplish even simple tasks.

 

Perhaps most frustrating of all is the uncertainty I now experience when it comes to my mind. I used to easily memorize information, but now struggle to find words or put them in the right order when speaking. When proofreading my writing, I’ll often find that I’ve inexplicably typed the wrong word. This is all part of the infamous brain fog of fibromyalgia. It makes me uncomfortable when talking with even close friends, let alone people I don’t know well, and impacts my confidence as a writer and my self esteem in general.

 

In spite of all this (and maybe partially because of it) I’m a huge believer in silver linings. What, you might ask, could possibly be a silver lining to so much uncertainty?

 

Maybe, if we can harness our uncertainty, we can let it force us to realize that uncertainty is a natural part of life.

 

The world teaches us that we should have every step of our lives planned out. And part of me really likes that. I want to know all the details. I want to be prepared. But is this healthy?

 

This expectation starts young. I didn’t realize just how profound an impact it has until I was a high school leader at my church for a few years. Students were expected to know where they wanted to go to college and what career path they would follow well before they graduated. I could see how much pressure and stress this put on the students. And the expectations continue throughout life—people expect you to know who you’ll marry, how many kids you’ll have, what you’ll do every 5 years of your life, when you’ll retire, etc., etc. If you don’t have everything planned, people seem to think there is something wrong with you.

 

Huh. Kind of makes you realized that certainty, or at least the illusion of certainty, can be exhausting too. Probably because pretending we’re in control of everything isn’t the way God designed us to live. In fact, the book of James has some pretty harsh words about acting like we know everything:

 

“Now listen, you who say, ‘Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.’ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, ‘If it is the Lord’s will, we will live and do this or that.’ As it is, you boast in your arrogant schemes. All such boasting is evil.” (James 4:13-16 NIV)

 

Pride creeps in (aka boasting) when we become focused on our will and our need to control every aspect of our lives. Instead, we’re called to recognize our dependence on God’s will and surrender our uncertainty to His sovereign will and trustworthy love.

 

Maybe our unique understanding of uncertainty, brought about by chronic illness, will allow us to extend grace to others because we won’t expect people to have everything figured out.

 

Maybe we can extend that same grace to ourselves. Wouldn’t that be a relief? To know we’re not expected to have everything together at all times?

 

I’m realizing that uncertainty is part of being human. If we take the time to recognize the normalcy of uncertainty, we can also recognize that our faith makes uncertainty okay.

 

We don’t have to be uncertain about God. We’re assured in the Bible of His unchanging nature. (Hebrews 13:8) We’re assured of his presence. (Matthew 28:20) We’re assured of his unchanging love: “Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I entrust my life.” (Psalm 143:8 NIV)

 

The uncertainty of chronic illness starts to look smaller the more we focus on God’s certainty. I’m not saying it’s easy. But it’s possible. Some days will be harder than others. But the flip side of knowing some days will be harder is that we can rest assured that some days will be easier.

 

Once we stop running from uncertainty, we can embrace the fact that there is a positive side of not knowing everything. I’m reminded of a quote by Luci Swindoll, one of my favorites that I recently rediscovered: “Lord…may I relish the joy of knowing you are full of wonderful surprises.” Even in the midst of chronic illness or whatever life throws our way, let us never forget that God can certainly bring about beautiful things that are more than we ask or imagine.

 

Even in the midst of life’s uncertainty, let us never forget that God can certainly

bring about beautiful things!

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Encouragement

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It is difficult when your illness dictates your life. When you are taped with no way out. Unable to live. Merely surviving one moment at a time. Hope seems light years away. Everything seems to crumble right before your eyes. Everyone has days when they break. It is okay to have break downs as long as you don’t give up. You have everything you need to overcome these struggles.

You are NOT alone. Others feel this way as well. It won’t be like this forever. Eventually you will be able to live life to the fullest again. We must hold on to this hope, for it gives us the strength to keep fighting. Keep your faith. Stay strong. Hold onto hope.  You have so much strength and courage. You accomplish amazing things on daily. Be proud of all you have overcome.

It’s a season for beauty and blessings. Your strong will provide strength and hope to countless people. There will be positive things that occur because of this difficult season in your life. God’s got this. Rest in his loving arms. Blessing are just around the corner. Be open too receive all the Lord has to offer. Gentle hugs spoonie warriors. Sending prayers and spoons.

Praise God for His Faithfulness

 

“How enduring is God’s loyal love; the Eternal has inexhaustible compassion. Here they are, every morning, new! Your faithfulness, God, is as broad as the day.” Lamentations 3:22-23

Yahweh,

You are faithful even when I don’t feel You near. You are always with me. You are faithful even when my body or mind betrays me. When those I love reject me. You provide strength. Teaching me to be dependent on You. You are faithful, as the emotions run wild. Faithful even when the doctors fail. When isolation traps me. When my world is falling apart.

Lord Jesus, You are faithful in the smaller and bigger ways than I can imagine. Your faithfulness surpasses all understanding. Great and beautiful is Your unending faithfulness. You are my hope. Comfort. Provider.

Elohim God my creator knit my heart to Your. Guide me on the path You designed especially for you before air kissed my lungs. I am Depend fully on You. The storm will rage, but I have a secure and faithful anchor. Fear has no place. In You, I have sweet victory. Your faithfulness remains the same.

Amen

Psalms Bible Study

    This summer I am leading a super laid-back women’s online Bible study. We are reading one Psalm a week during the summer. We would be honored if you dropped by now and then or read through this life changing book with us. This post will focus on a brief introduction to the book of Psalm. Additionally, there will be a little on chapter one.

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Introduction to The Book of Psalm

A place of comfort. A refuge of strength with a ray of hope. Words alive to be cherished and written on the heart. The book of Psalm. Regardless of how one feels or where there are in their live story or how mature they are as a Christan, there is a relatable Psalm. Truly a Psalm for everyone.

The history of Psalm is richly complex over the course of more than 800 years. The outline of what occurred historically around various Palms is interesting rhythm to check it out here. I want to point out a few of these events behind this book of the Bible. For example, David & Goliath, During the Babylonish captivity, On the rebuilding of the temple, and During the war with Absalom.

Furthermore, God used numerous individuals. A few authors include David, Moses, Asaph, Solomon, and others. In addition, there are orphan Psalms which we do not know who wrote them.

The book of Psalm is broken down into five books. The order is as follows: Book 1 (Psalms 1–41), Book 2 (42–72), Book 3 (73–89), Book 4 (90–106), and Book 5 (107–150). Needless to say, this is the longest book of the Bible.

How is a Psalm defined? It is a poem, song, act of worship, prayer, and praise. The Psalm embodies experience, expression, and emotion. Read more in depth about this outline here. The Psalms tend to fall into these genres hymn, lament, thanksgiving, confidence, Remembrance, wisdom, and kingship.

A book could be written on the purpose of this book of the Bible, in opening Matthew Henry shares the following:

To assist the exercises of natural religion, and to kindle in the souls of men those devout affections which we owe to God as our Creator, owner, ruler, and benefactor. The book of Job helps to prove our first principles of the divine perfections and providence; but this helps to improve them in prayers and praises, and professions of desire towards him, dependence on him, and an entire devotedness and resignation to him. Other parts of scripture show that God is infinitely above man, and his sovereign Lord; but this shows us that he may, notwithstanding, be conversed with by us sinful worms of the earth; and there are ways in which, if it be not our own fault, we may keep up communion with him in all the various conditions of human life.

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Now, let’s take a look at Psalm chapter one (The Voice Translation), which was written by King David:

God’s blessings follow you and await you at every turn:
when you don’t follow the advice of those who delight in wicked schemes,
When you avoid sin’s highway,
when judgment and sarcasm beckon you, but you refuse.
 For you, the Eternal’s Word is your happiness.
It is your focus—from dusk to dawn.
You are like a tree,
planted by flowing, cool streams of water that never run dry.
Your fruit ripens in its time;
your leaves never fade or curl in the summer sun.
No matter what you do, you prosper.

 For those who focus on sin, the story is different.
They are like the fallen husk of wheat, tossed by an open wind, left deserted and alone.
In the end, the wicked will fall in judgment;
the guilty will be separated from the innocent.
 Their road suddenly will end in death,
yet the journey of the righteous has been charted by the Eternal.

At times, it seems like a tragedy with a side of heartbreak is around each bend. With what seemly endless negativity acknowledging the blessings around each turn can seem impossible. The negativity makes our view blurry. Take a few minutes to acknowledge the blessings in your life. Consider the blessings that you don’t generally “count”.

While studying the Bible or being connected with God in prayer avoiding sin can sound like a piece of cake. Yet once back into the world it is evident that this is not easy. Falling into sin can be second nature. We can only avoid sins highway and walk in the way of the righteous is only possible through the strength of Jesus.

My prayer is that each person reading this will become more rooted in Christ in this season of life. That you would drink so deeply and often of the Father’s Word that you would not run dry. Soaking up His goodness. I am confident that all you do within God’s will, will prosper beyond your wildest dreams. Your journey righteous sister has been charted compassionately by the Eternal.

Main points of this Psalm

  • The blessedness of the righteous man (1-3)
  • The desperation of the wicked (4-5)
  • A final contrast between their two ways (6)

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Lord,

All honor, glory, and praise belong to Your holy name. In Your name mountains are moved and seas parted. You are on the move in Mighty ways. Nature reflects Your beauty. The earth sings Your praises. You are beyond my understanding.

I am surrounded by your blessings no matter where I turn day or night. Freely You have lavished Your love on me. I praise Your name for who You are.

I am undeserving of all Your goodness. Give me the strength to battle my flesh and avoid sins highway. Let me resist sin in the powerful name of Jesus.

Your Word provides me with strength, guidance, and joy. Allow me to remain focused from dawn to dusk on Your precious Word. May I write on my heart. May my thoughts be consumed with You. Holy Spirit move within me. Let me be firmly planted in You. Let me prosper in Your name. Allow me to serve You and bring glory to Your name.

Amen

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I want to invite you, sweet friend to continue to dig into Psalm chapter one with me. I pray that you will sincerely cherish these living and active words. I am confident that the Lord will work within you during your time in the books of Psalm. I am excited to give you free print out a which will hopefully provide guidance as you study the Word of God. Please download, print, and share.  

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For When I Am Weak, I Am Powerful: Finding Peace With My Disease

I am honored to introduce to you a beautiful Lupus warrior. Aliccia is sharing an amazing post with us in honor of Lupus awareness month. Please share to help us raise awareness! Who better to tell you more about this courageous warrior than Aliccia herself. A huge thank you to Aliccia for sharing some of her story with us.

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Hi! I’m Aliccia and I’m 24 years old. I love tea, Japanese cars, Netflix, good books and cold weather. I’m a Californian currently living in Texas with one fur baby named Takata. I like smiling, and I am proudly one of Jehovah’s Witnesses. I’m obsessed with galaxies and I like to write on occasion.

 

For When I Am Weak, I Am Powerful: Finding Peace With My Disease

By: Aliccia Rico

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My quest started in late 2015, on a cold November morning. I couldn’t take the pain and discomfort of being in my own body anymore. Selena Gomez had been all over the media talking about how she had a disease called Lupus, and I’d been battling some sort of illness that oddly sounded just like the one she’d been interviewed about. It seemed as though I’d been dropped off in the wilderness and told to make the best of the situation… Even though the joint pain and my hair falling out drove me crazy, almost to the point of a nervous breakdown. I’d joke about being a pro napper, but fourteen-hour stretches wouldn’t even aid the fatigue I felt on a daily basis… Let alone be normal hours of sleep. This wilderness I was in felt isolated from everything I thought I knew about myself, and those around me. Who could I trust with telling about this thing that has been plaguing me? Am I crazy?

I had been seeing a rheumatologist that never took my symptoms seriously. He had me on a Remicade infusion therapy that made me worse than I was before. It took me three infusion sessions and hundreds of dollars out of my own pocket to leave this office… He even laughed in my face when I was diagnosed with pleurisy at an urgent care. I’d fallen into a depression, even when I started seeing my current rheumatologist who diagnosed me as having “Lupus-Like Syndrome”, she doesn’t want to diagnose me with Lupus officially yet. The light at the end of the wilderness I was in got dimmer and dimmer. It felt as though the life was being slowly drained out of me, and I started giving up all hope that I had.

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I found myself months later standing in my restroom, my face wet with tears and red from inflammation. The frustration finally hit its peak the moment I got out of bed. My hands couldn’t open all the way, my hair lay in the sink in chunks. I couldn’t recognize who was staring back at me, the breath gone from my lungs. How did this happen? Why did this happen? I threw all the items on the counter onto the floor, screaming at the top of my lungs. I fell to the floor and started sobbing, trembling from confusion, sadness, and anger. I was angry at my body, angry at how much more my hands and arms hurt from my moment of insanity. All I wanted was for all of this to be over. I looked up to the ceiling, my breath catching in my throat as I try to clear my head. My phone had been ringing for the past five minutes, and I didn’t care.

 

Finally, I grabbed my phone as best as I could, seeing a familiar name across the screen. I unlock the phone, my breathing slowly getting back to a normal pattern. I fixated on the words on the screen, making me cry even more.

I don’t know how it feels,
but we’re in this together.
You’re not alone… I love you.

 

I closed my eyes and started praying. The light at the end of this wilderness had been in front of me all along! Years of frustration, agony, and depression began pouring out of me. I thanked my God, Jehovah, for giving me such an amazing person to help me through this hardship, and for never abandoning me. The more and more I poured my heart out, the more I felt the strength building in my bones. The thing about faith is that it’s based on trust, and trust is what I had to give to my God to endure the obstacles put in front of me. That day, my whole outlook on my disease changed in various ways. I put away the makeup that I would use to hide my skin, I chose to smile and not dwell on the pain or weaknesses that I had now become accustomed to.

 

I refused to stay complacent, depressed and have a “woe is me” attitude. I’d read stories online for support with this disease, but none of them were even remotely positive. The whole goal with living with any type of autoimmune disease is to find positive support and know that you’re not alone. I didn’t and don’t want special treatment, nor do I want to be a walking billboard of the typical “but I don’t look sick” movement. I want people to see me for who I am, not the unfortunate disease I have. Facing each day with a prayer, relying on the support of my spiritual family and friends and telling myself I could face the day helped me personally so much.

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In one of my favorite scriptures in the Bible, the Apostle Paul wrote, “So I take pleasure in weaknesses, in insults, in times of need, in persecutions and difficulties, for Christ. For when I am weak, then I am powerful.” (2 Corinthians 12:10) I take those words to heart because in my weaknesses, I have been the most powerful. While in a flare up, getting out of bed is an accomplishment, making tea is a milestone, getting dressed is a feat. My faith is stronger than my weaknesses and my illness, stronger than the anxiety and depression that I face, my faith gives me the strength to walk when I am so physically tired that I want to collapse, it gets me through each day.

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That day I had my breakdown, I was at my lowest point in the wilderness called Lupus. My faith brought me out of the wilderness to a brighter, clear road that showed me that yes, I do have an autoimmune disease, but I can get through these challenges I face (even as simple as opening a jar) no matter how hard they are. Everyone’s autoimmune disease quest is different, everyone copes with things differently and fights their battles in their own way. I admire those who are enduring chemotherapy, those who are mothers and fathers while having a form of autoimmune disease, those ones who need canes and wheelchairs. Your strength is admirable, and in no way could I ever make light of what others go through. We’re in this together, and we will get through it… Day by day.

 

Remember, when you are weak, you are powerful.

 

Fasting

I am honored to begin this journey through the study Finding I Am, with you. I am confident that God will do an awe-inspiring work in you. He will continue to transform your heart to reflect His. Prepared to be deeply blessed!

Lysa opens the book discussing spiritual giants and fasting. There is something powerful in giving up food (or something else) in order to sit at the Lord’s feet. Worship becomes richer. The encounter with the Lord is deeper.

I grew up in church. Sometimes I was there as often as I was at home. The twenty-four-hour famine was on my bucket list for years. Finally, I reached youth group age.  I sprang into motion once the signup sheet was out at the tender age of twelve.

Our last meal was at school directly after we headed to church. The leaders pour a lot of time into crafting memorable games, worship sessions, juice breaks, and other activities.  Many details I cannot recall, but I know it was a time that I grew closer to God.

Seconds before communion, which is how we were breaking the fast, I grabbed my friend. Instructing her to get help. I wasn’t able to see. I passed out. However, that didn’t dampen my experience. Shortly after recovering, I asked when we could do the event again. That experience led me to a season of regular fasting on my own.

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Fasting provides a unique way to encounter God. Jesus taught about fasting, “and when you fast, do not look miserable as the actors and hypocrites do when they are fasting—they walk around town putting on airs about their suffering and weakness, complaining about how hungry they are. So everyone will know they are fasting, they don’t wash or anoint themselves with oil, pink their cheeks, or wear comfortable shoes. Those who show off their piety, they have already received their reward. When you fast, wash your face and beautify yourself with oil, so no one who looks at you will know about your discipline. Only your Father, who is unseen, will see your fast. And your Father, who sees in secret, will reward you” (Matthew 6:16-18).

In this season of my life, due to my combination of chronic illnesses, I cannot fast from food. I want to encourage you if you are in a similar situation. All is not lost if you cannot fast from food. While it is an amazing experience, your current health situation is not a surprise to God. His grace extends where our bodies fail.

Fasting can be done in numerous ways. Some non-food suggestions are fasting from technology, a television series, or a hobby. The goal is to spend more time with God. Giving Him your undivided attention. To enhance your relationship with Him. Time away from something allows more time with God.

Lord,

We adore your precious name. You are worthy of all honor, glory, and praise. You reign victoriously. Awe-inspiring, faithful, and sovereign.

Thank you for the gift of fasting. We praise Your name that Your grace extends into the depths of where we lack. We praise You for providing a way where we see none. Thank you from the bottom of our hearts for the time we spend alone with You. The time we worship You, seek Your face, talk with you, and spend in Your living Word.

Allow of Your children who read this to grow closer to You and to experience You in a unique way. Burden their hearts for You. Set their soul on fire. Bless this Bible study in an awe-inspiring way. Beyond our dreams. We praise Your Holy Name.

Amen

Happy Birthday

I have written creatively for as long as I could hold a pencil. These are two fairly old poems written in honor of my mom for her birthday, today. I could not have asked for or dreamed of a better mother. God has truly blessed me. She has been with me for every appointment, ER trip, urgent care trip, every test, and every surgery. Sh She is a huge encouragement and the source of strength. I am blessed that she introduced me to the Lord and raise me in a church. Thank you will never be enough. Happy Birthday, Mom!

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Fancy dresses princess messes

Twirling on toes

Bubbles to blow

Picking flowers as laughter showered

 

All part of the little girl I once was

Butterfly kisses before

Bedtime prayers

Daddy’s little girl

Mama’s little helper

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Innocent

Curious mind

Carefree girl in a perfect world

 

Even though times seems to fly

The years go by and by

Simply in a blink of an eye

Memories engraved are meant to last

Of the little girl, I once was

Spreading my wings I fly

Far way and so many things

But I’ll never forget the little girl I once was

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Dainty soft pink slippers twirling high on toes few doors remained closed life an open book

Tapping rhythm to a new song always found a safe place to belong never even had to look

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

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The whole world lay in my back yard the only attack needing to be dodged was by dragons

Only things exist are what we created, only innocents of the wild imagination

Exploring wonderland unplanned adventure in all kinds of weather

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

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The world seemed against me could not yank free from the chains, oh the lies being fed to me

Unknown sadness filled my eyes had no reason but no choice I had to cry

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

 

Finally, I belong; these memories blanket my soul uncovering things that were buried in that hole

Overwhelmed with agape to the point of speechlessness anointed with blessing

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

 

Oceans away miles apart I long for the peace covered in that place the ground covered in grace

It is how I escape all the troubles of the world love falling like rain soaking everyone in its embrace

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

 

Only pictures remind of the past, memories fade with rain cause we know they never truly last

Pain consumes every inch of my being prying me away from the life that once was

Learning to dance in the storm though I pray for life to return to the norm

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

 

mommyandme

“You love your parents, but as you get to know them you fall in love with them.” I believe this quote is absolutely true. As a child, our parents are heroes. As teenagers, we drift away from our parents. We are so consumed with our lives, we don’t take enough time to get to know our parents and cherish the small amount of time God lends them to us. I cherish the time I have with my parents.