Bittersweet Birthday

I had overheard people saying that old age caused pain. So, by the time I had chronic pain, about nine years old I thought it was I just a part of the aging process. At the same time, I wondered how everyone else was coping so well with the pain and mine was taking over. I felt extremely guilty for missing an excessive amount of school. It took some time for me to understand that children should not be in intense pain or pain all the time. Those people were indeed referring to elderly people. Who knew?

From a fairly young age, I associated growing up with having more pain. I am thankful to be alive. Especially in light of a handful of times, it was questionable if I would make it. Even so, my birthday is a little difficult emotionally.

It’s not just the physical pain. I tend to feel more isolated around my birthday. This is the time I notice that indeed I am not a typical young adult. The time I need to grieve the things I can no longer do. Time to grieve all I am missing out on.

The social clock is ticking obnoxiously. I can just hear people saying, “She is nearly twenty-three years old. She should be out on her own, not living at home.” It is difficult for me to view my accomplishments. My brain finds it natural to highlight the struggles during certain seasons. Society, as we know, has too many unneeded options. I have learned to allow comments to roll off my back, but sometimes it has a way of getting under my skin.

Furthermore, I have found that the older I have become, my memory has faded. The brain fog is thick. I was devastated when this began to happen. Heartbroken as the memories of my furry friend slipped out of my grip.

It is okay to struggle with holidays or your birthday as someone with a chronic illness. It is okay to have fears. It is okay to not be okay. As long as you do not give up. Even when you don’t feel like it, hold onto hope. Crawl forward, even if you are slower than a snail, you are still making progress.

Even though it is emotional, there is a part of me that looks forward to my birthday. I am deeply blessed to have people in my life who support me and love me. I am thankful for days of simple joy and laughter. The Lord has allowed me to thrive in the midst of great adversity.

“For You shaped me, inside and outYou knitted me together in my mother’s womb long before I took my first breath. I will offer You my grateful heart, for I am Your unique creation, filled with wonder and awe.You have approached even the smallest details with excellence; Your works are wonderful, I carry this knowledge deep within my soul. You see all things; nothing about me was hidden from You. As I took shape in secret, carefully crafted in the heart of the earth before I was born from its womb.You see all things; You saw me growing, changing in my mother’s womb; Every detail of my life was already written in Your book;
You established the length of my life before I ever tasted the sweetness of it. Your thoughts and plans are treasures to me, O God! I cherish each and every one of them! How grand in scope! How many in number!” Psalm 139:13-17 The Voice Translation 

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Verse of The Year

Plenty of people craft a New Year’s resolution. Furthermore, it has become routine to designate a focus word or a Bible verse for the New Year. Recently, in our online Bible study my friend and co-leader posed the question of what verse will be their verse for 2017. Previously, I have never chosen a verse of the year and figured why not prayerfully chose one.

Friends have confined in me the blessings of selecting a verse of the year. For example, it assists an individual in focusing on Christ, provides encouragement, and guidance.

I wasn’t certain where to begin, therefore, I examined my prayer journal. Next, I prayed for direction for my verse of the year. I selected a handful of verses that deeply encourage me. I read through them and prayed once more. One verse had surfaced frequently over the past few months and consistently stood out. This particular verse seemed to fit for my verse of the year.  “Now to the God who can do so many awe-inspiring things, immeasurable things, things greater than we ever could ask or imagine through the power at work in us.” Ephesians 3:20 The Voice Translation.

I adore this verse, which contains reminders of God’s mighty truth. Likewise, Ephesians 3:20 speaks measures of God’s character. On a different note, I have learned that God’s plan is far better than mine. Furthermore, things usually don’t go as I had planned, however, God receives glory in the end. He uses what is viewed as negative events to shape me into the person He created me to be. Additionally, He is continually doing a greater work in my life than I could ask for, imagine, or fully comprehend. My goal is to focus on the awe-inspiriting things and purpose God has for my year. Through His power to serve Him better as well as others. My wildest dreams are nothing compared to His perfect plan.

I am helping lead an online Bible Study. We are reading the book Living So That by Wendy Blight. This afternoon I am preparing for an online event later this week. One of the topics spoken about is resting at Jesus’ feet. Sitting silently; just being with Him.”Time spent in silence seeking God’s will is not time wasted, but time spent wisely.” I know it’s hard to get time away. To get a couple of quiet moments. To still our hearts. To actively listen. A few seconds to a few minutes of silence make a difference.  Of course, this takes me back to my journey to Taize, nearly five summers ago.

Taize is a Christian community in France were thousands of teens and young adults gather to draw closer to God. The silence was an essential part of worship there. Learning the simplicity of just being with the Lord.

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I begged God to give me a map for my future, as I sat on a bridge in silence for an hour. That hour changed my walk with Christ allowing me to grow closer than I knew possible.

Now I am certain I never would have understood all He had in store for me.  I wouldn’t have understood that I would minister to those who are chronically ill- I didn’t even know what Lupus was. I wouldn’t have understood that I was called to an online mission field, not Brazil or Africa. I wouldn’t have understood that I needed to slow down or the weight of this quote, “Sometimes we need to care for the 5,000 before ourselves, but sometimes we need to care for ourselves before the 5,000.”  There is still so much I don’t understand, but I trust in God to guide my every breath.

 

 

Appreciating Communion

I struggle to find the right words to share with you this beautiful day. I know my words cannot fully explain the depth of all Jesus has done, but I pray that you will be encouraged in some way.

Holy week is a time for reflection. Reflecting on Jesus crucifixion. Reflecting on God’s love. Reflection on our lives; on our relationship with Christ.

Holy Thursday gives us the chance to refocus our hearts on the events of Holy week. A time to remember the first communion. We are also reminded that Jesus came to serve others as well as give his life for our sins.

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One way Jesus remains close to us is through communion. Communion is more than just bread and juice. Every time we receive communion Jesus becomes a part of us. Communion is an outward remembrance of the inward presence of Christ.  This is the personal presence of Jesus in the world today. Communion can be a very powerful experience.

However I can recall a time as a teenager when I was just going through the motions with communion, I didn’t stop believing in it, but it didn’t mean a lot to me. I had stopped appreciating it. It was just something that happened right before worship was over. On our journey home from Taize (which is similar to a retreat) experienced the most powerful communion in my life. It’s something I can’t completely put into words. The pastor who was severing it made it completely personal to the group of teens I was with. She didn’t just read words from a piece of paper, she spoke from her heart. I don’t remember everything she said however I do remember feeling completely overwhelmed and breaking down in tears. That moment I remembered how much God loves me and that He sent his son for me.

It’s not enough to merely go through the motions.

 

Don’t You Dare Run Away

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After becoming ill, many lose their faith. Unbelief dictates as anger boils over. Blaming God. Wrongfully accusing him. Instead of running towards God, they run away. Instead of filling up with God, they fill up with negativity. Instead of trusting him, they turn away.

It is human to swing through the jungle of emotions and experience doubt. The key factor is don’t run away. Pour out your heart to God, vent in confidence to a brother or sister in Christ, evaluate your doubts, even scream at God. God can handle your anger or anything else you experience. Whatever you do don’t you dare run away. Running away will only make things more difficult. God designed us to run to him when trials strike; he is our sustainer and strength.

“Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you.” 1 Peter 4:12. At times, we are convinced that no one understands our trials. We act surprised when suffering drops by.

Suffering cannot be avoided. Because of the first sin of Adam and Eve we live in a fallen world. Suffering leaks endlessly, robbing our focus. There is a multitude of suffering that is heartbreaking. It consumes lives… it consumes our world.

Suffering is merely an element of the world we live in. God is all knowing. He deeply, flawlessly, and fully understands every detail. Suffering is no different. It is no surprise to God. God uses it in our lives and to bring him glory.

We might not understand the role of suffering in our lives, but we need to confidentially trust in the Lord. Ultimately he will receive glory from everything. His purpose will one day be revealed.

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New Year’s

2015 is drifting into our history. Countless changes and surprises transpire in a year; things that we would never dream happened. We have become better versions of ourselves; a step close to who God created us to be.

I hope as you reflect you detect the beauty from the pain. Though reflecting is wonderful, it can also negatively impact us. Slipping into harping on the negative events is easy to unknowingly do. It is hard to be joyful with a chronic illness, if, like most of us, the majority of your goals were not accomplished, and you are not even a breath closer to the dream that sets your heart on fire.

Acknowledging the negativities and let downs is fundamental, but we need to also need to gracefully be thankful for the countless positivities.

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If you follow Chronically Hopeful, you most likely know that the biggest event of my year was being admitted to the hospital last April due to elevated live enzymes and a severe Lupus flare. So, yes the most important thing I accomplished in 2015 is surviving. Every day is a struggle, still, but every day I’m grateful. It is hard to evaluate how I am doing in comparison to last  year. I am somewhat stronger, however, things are not where I need them to be. But I am determined to take steps forward towards less pain and a more normal life- whatever that might be.  You are not alone if you are battling similar health battles.

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Making a New Years Resolution is more of a fad mixed with tradition. ‘Everyone’ is making them. No one is actually keeping them. By the time January is ready to make a graceful exit, resolutions have fallen away like a tear drop in the ocean.

I usually do not make New Years Resolutions. I can barely plan out this week without becoming utterly overwhelmed due to the fact that I don’t know how I will feel on any given day. I find that I personally do better setting a bunch of goals versus one big yearly goal. I have been compleating making a New Years Resolution. I have decided to set several goals including reading through as much of the Bible (cover to cover style),  to improve Chronically Hopeful specifically get 50 readers, and to improve things with my health.

So, what does the Spoonie New Years Resolution call for?

Flexibility: Make your resolution broad.

Realistic: Dreaming big is awesome, but keep your goals in your reach. Jump outside your comfort zone without putting your health at risk. You want to set yourself up for success.

Accountability: Share your resolution or goals with someone else. Allow them to hold you accountable. A little accountability goes a long ways.

Share some of your New Year’s reflections or resolutions in the comments.

 

Families are messy to say the least. Somehow we learn to function in the dysfunction and chaos. Whether we like it or not our families influence us in countless ways and determine various aspects of our lives. We love them and hate them. Regardless they are a part of who we are at the core.

My family is not resilient to typical family chaos. We are just as flawed, if not more than the average family. Some days I ask God what he was thinking when he paired us together, our personalities are extraordinarily unique. That when God reminds me of the beauty woven within my family.

I am thankful for my family, who have sustained me and walked with me on my journey (some didn’t have a choice). I never went through typical teen rebellion stage, but I did take my family for grant and the fact that they have always been there for me. Through my short time away at school and the decline of my health, I have learned to truly cherish those I love. Yes, they might be embarrassing at times, but no matter what they are my family; a blessing from the Lord.

The Heart of Worship

Worship is essential to our spiritual well-being. We were created to love and worship God. However, God does not need  you to worship him. He desires to be in close fellowship with you. He craves, for you to understand his love for you. Worship renews us providing us with joy, strength, peace, and much more.

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This song is a classic. Without knowing it many times our unfocused hearts, shove God out of the way; even during worship. We idolize other things or become prideful.  Our sin coved hearts begin to harden as we take steps backwards, away from the throne. How many time have we speculated how those around us are worshipping. In our minds saying, “She is showing off, that is not real worship.” Also allowing our minds to paint a captivating daydream. Consumed with our schedule, we fidget entertaining anxious thoughts.  Or we are more focused on the talent of musical ability than on the Sovereigness of God.  Music is a magnificent way to worship, but it is not the heart of worship, not the main focus.  Ironically, I am using songs to get me point across. The lyrics demonstrate truth,

“I’m coming back to the heart of worship
And it’s all about you
It’s all about you, Jesus
I’m sorry Lord for the things I’ve made it”

“The heart of worship is our heart, delighting in Jesus and expressing praise to him for the true things the Scriptures teach us about who he is and what he has accomplished for us.” God does not want us to participate in a drama production; he simply wants us to come as we are to authentically worship him. He knows our hearts. He knows every flaw and failure; every negative thing in our character and in our life. Despite this, he commands us to come as we are, as he lovingly extends his grace to us.

The majestic name of, the Lord is worthy of all honor. He lovingly crafted every corner of creation with passion. His fingerprints are evident throughout nature. “God’s glory is everywhere from the smallest microscopic form of life to the vast Milky Way, from sunset and stars to the storms and seasons.” Before God crafted the universe he construed a purpose for your life. Our righteous Lord is the source of life. Allow your heart to align with his will and worship his name.

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It is good to passionate pursue things, striving to succeed as hard work pours out. However, none of these things should become a god in our life.  In the spoonie world chasing after the Spoonie dream is easy. The dream of a perfect treatment plan, pain-free living, healing, or aspects of a healthy person’s life such as a social life. “To treasure God more than pain-free living.”  Do you treasure God more than anything in your life?

I love the words to this song though it the Spirt has showed me a lot.

“We must not worship something that’s not even worth it
Clear the stage, make some space for the one who deserves it
Anything I put before my God is an idol
Anything I want with all my heart is an idol
Anything I can’t stop thinking of is an idol
Anything that I give all my love is an idol

And we can sing all we want to
We can sing all we want to
And still get it wrong
Worship is more than a song”

If we are not intentional about riding our hearts from idols we, fall into the trap of worshiping them without even noticing it. The enemy longs to disconnect us from our creator. Keeping us away from worship is included in his laundry list of ways to diminish our faith. He attempts to keep us too busy to spend time with God, “the primary purpose of Sabbath margins- of saying no when appropriate- is to diminish our devotion to all other suitors and crystallize our allegiance to God.” Spending a substantial amount of time with God on a regular basis is not only a command the Lord gave us, but it is also essential to life. Time in worship allows us to be renewed in a unique way. Enter boldly into the Lords presence’s and worship him fully.

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“For you are my hiding place; you protect me from trouble. You surround me with songs of victory.” Psalms 32:7

There are days living in the Spoonie world is difficult. Thick anxiety is layered within. Fear of those two heavy words.. what if. There have been an abundance of moments on this journey where I wanted to hide. Like a timid child hidden from the melody of an intimidating thunder-storm.

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When we were children, we didn’t just hide out of fear. Hiding provided entertainment and excitement. The anticipation of being found remains unwavering. However addition positive emotions associated with hiding have melted with age. Negative slush traps us.

Hiding provides an escape. For even a moment I would like to escape the burdens of the Spoonie world; the doctors, medication, testing, emotions… the burden of being a spoonie.

This verse reminds us of our ideal hiding place, which is the Lord. In the mists of chaos and struggles we can crawl into the Lords compassionate arms. He is our hiding place. He is the source of all we need; our everything.

The Lord knows everything; his understanding is unhindered. He spares us from countless tragedies. He gently guides us through each storm.

There is a blissful victory in Jesus. He allows each moment of our lives to work together and bring Him glory. Though I may walk through the valley of the shadow of death melting from the negativity within I know somehow the Lord will receive glory. There are many things I do not understand. But I refuse to allow the burdens of the spoonie life to hinder my faith. Despite it all I will praise the Lord. With a heart of gratitude and wonder I will thank the Lord for my struggles. For he will receive glory and victory. Blessings are woven into this season. He will transform it into a master piece. It will be used for something beautiful.

“Nothing in your life has happened by chance. You are here exactly at this moment in history with exactly the circumstance you have encountered because God has a specific task he wants you to fill.”  The Lord has an astonishing purpose for your life. He will use every negative thing for good, to encourage others. Keep faith. When you cannot take another step, rest in the sovereign arms of God.

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The Blessing of Pain

Returning home from the hospital is a breath of fresh air, however it comes with countless diverse challenges. I tend to forget that being in the hospital demands a lot from my body. Though I feel as though all I did was rest, it is actually the conservatoire. The dehydration and lack of nutrition take a toll on the body. Not to mention daily blood work, new medications, antibiotics, cat-scans, and additional testing. Despite the weakness, towards the end of my stay at the hospital I attempted to walk up and down the hall a few times a day. My strength is still oceans away.

Being admitted to the hospital has drained all of my strength. My to do list swarms my cluttered mind. I desperately want to go back to ‘normal’, but I know if I push too hard too fast my body will not forgive me. Regaining some sort of balance and normalcy is a moment by movement struggle. It is hard to determine if I am pushing myself too hard or not hard enough.  #Spoonie Life Struggles

Of course, it is the end of the semester. Therefore losing ten days is drastic. I am usual complete my school work weeks ahead of time. I hate having assignments hanging over my head. Being behind in school work is a nightmare for me.

After leaving the hospital I reflect as much as my weary mind allows me to about the days before being admitted, the stay, and life in general. I can’t help, but acknowledge the blessing of pain. The blessing of pain sounds bazaar, for lack of a more fitting word. No one enjoys being in pain, it is absolutely miserable. But, God gave us pain for a reason, ultimately it will bring glory to His name and sometimes it is a life savor. Intense pain is a red flag scream, “HEY WAKE UP, SOMETHING IS WRONG.” Many times being a spoonie I ignore these sings. Discerning what is urgent is difficult.

I was informed the night that I was admitted, normal people do not have any signs of high liver enzymes. Normal people experience no pain. However, personally the liver complications nearly broke the pain scale. My pain was without a doubt a ten out of ten.

Honestly, that entire day is a blur, I could not think straight and was consumed with symptoms, pain, and the worst weakness. I nearly feel asleep talking to people at church, which is out of character for me. The Lord truly blessed me though my pain that day. If it wasn’t for the weakness, pain, and my mom I could have encountered permit damage. The negative possibilities spelled out to me were shocking. No one knows how my enzymes rocked up so high then crashed at the speed of light, none of it made logical sense. Without a doubt my condition would have been much worse. It is hard to swallow the pill of beauty and blessings through our pain. “ Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance,  and endurance produces character, and character produces hope,  and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” Romans 5:3-5. 

The Lord is faithful and he always provides. He graciously pours out countless blessings in our lives, but we fail frequently to acknowledge them or to understand them. The Lord uses everything for his glory. He can turn our worst pain into His greatest blessing.