Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

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Spoonful of Spoonie Encouragment

Mornings for those with a chronic illness are a struggle beyond words. Waking up and willing our bodies to function is a fight. Here is a spoonful of encouragement for spoonie warriors. Happy Monday, brave friend!

You have victoriously made it out of bed this morning. The symptoms and pain are already overwhelming, but you’ve got this. You only need to take today one minute at a time. You have all the strength you need, even though it might not seem that way. Anxiety and depression attempt to dictate your day. Take a breath. Take a break.  Get some rest. Keep fighting to make today the best day possible.

You have been chosen to walk this path. It is one filled with heartbreak, disappointment, and setbacks. Walking the path of someone who is chronically ill is a challenge to say the very least. Being sick has most likely disrupted your flawless rhythm with life. It has stopped you dead in your tracks. Your illness has tried to toss your dreams out the window.

Though this path is difficult, I assure you there is a lot of beauty to be discovered. Sure life is not what it used to be, but the song you sing is just as beautiful. There is hope, joy, love, laughter, and life to be found on this path. You will be able to recreate your wonderful dreams. You are still you, despite your illness. You are an amazing and beautiful person with a flawless story and a huge purpose.

    There will be days that you become overwhelmed and feel completely alone. Your feelings are understandable, however, I promise you, you do not walk alone on this path. There are people who care about you, people who understand how difficult the journey is, and people who want to support you.

I am proud of all you have accomplished. I know you will thrive today. This week will be lovely simply because it is the only choice. While you don’t need to be positive all the time you need to take baby steps forward. You are doing amazing. Raise your coffee (or tea) to a great week warrior!

What I’m Reading Wednesday

At any given moment, I am reading an abundance of books. Typically, I have two books for online Bible Study, a book for personal Bible study and/or Christian living book, one fiction book, and two textbooks. In addition, I read an Old Testament and New Testament book of the Bible. I have been eager to write this post for you.

Currently, for the first term of my semester, I am reading Caring for People God’s Way. Additionally, I am reading Theories of Personality.

The past several weeks, I have been reading the Armor of God by  Priscilla Shirer in my one online Bible Study. Then, in a few short days, I will begin assisting with my other online Bible Study using the book Discovering Hope: Beginning the Journey Towards Hope in Chronic Illness by Cindee Snider Re.

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Recently, I finished reading Slightly Bad Girls of the Bible: Flawed Women Loved by a Flawless God. I was amazed at how well Liz taught with humor, clips of fiction writing, personal stories, and emphasis on the Bible in a unique way. I am a zealous fan of Wendy Blight’s writing and her teaching. Liz used a similar format in her book, which captivated my attention.I would recommend this book to any women. This book examines the lives of Sari, Haggar, Rebekah, Leah, and Rachel. Be prepared to see these women as well as their stories in a new light.

Product Description From CBD.com is as follows, “Slightly Bad Girls of the Bible is the latest of Liz Curtis Higgs’ “girlfriend theology” Bible study. Combining contemporary fiction with a verse-by-verse commentary, she explores the “slightly bad” lives of a few Old Testament women. Far from evil, yet slightly bad, these women from the book of Genesis stubbed their toes along the rocky path of righteousness. Sound familiar? These ancient sisters aren’t a whole lot different from us. Laced with humor and built on solid research, this book will bring you to the realization that God loves you just the way you are. Flaws and all!”

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Fiction Book. The biggest downside to this book is in the fact that it is the final book in the Bailey Flanigan Series. This is a sweet ending to the series. I simply adore how Karen Kingsbury includes the characters struggles as well as their time with God. Even though it is fiction she has a way of not only pulling the reader into the story but also challenging and strengthening their faith as well. You feel as though you have become friends with the characters. Beautiful tear-jerking wedding was included. Without a doubt, her books are life changing fiction.

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This is my personal Bible Study book. I began it a few short days ago so I don’t have much yet to say about it. Book description from CBD.com, “The book of Philippians calls you to see beyond your present circumstances and discover the authentic joy awaiting you in Christ. Get ready to explore this uplifting book through the tried-and-tested inductive study method – with an added writing step to help you treasure each word!”

 

Hope

New Year’s sweet bells of hope ring loudly as January launches. Fervently we compose resolutions so that this year will be astonishing. However, the sweet song evaporates. Leaving us in silence by mid-January as we waltz back into the reliable beat of everyday life. Focus is no longer aimed at hope or the resolutions. Slither into daily calamities, apprehension leeches on, despair dangles overhead, and sorrow is deep.

Providing joy, strength, and adding depth to our relationship with Christ. Despite heartbreak, pain beyond comprehension, and when our world seems to be crumbling before our eyes there is always a spark of hope. It is not always instinct, but then again living the way Jesus called us to is anything but natural. As Christians, we are required to battle our flesh. In addition, we are to fight to remain firm in the hope Christ provides for us. It is a daily fight. Let me assure you, my precious friend that the reward is immeasurable.

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How would you, dear friend define this simple word hope? Appearing frequently, it is engraved on our hearts. Yet we need a reminder of the biblical definition so that we resist conforming to the world’s definition of hope. Additionally, so that we remain steadfast in Christ and transformed by Him.Bible.org defines hope this way, “Hope” in Scripture means “a strong and confident expectation.” Furthermore, there is a clear element of trust throughout Scripture when hope is examined. Moreover, I find it essential to highlight the usage of hope in the New Testament, which I found on Biblestudytools.org. “The New Testament consistently uses the verb elpizo [ejlpivzw] and the noun elpis [ejlpiv”] for hope.” Both words here are Greek.

 

Elpizo is defined as (30 times in NT)1. to hopein a religious sense, to wait for salvation with joy and full confidence2. hopefully to trust in.png

Additionally, hope molds our character, providing joy, peace, confidence, endurance, strength, courage, and comfort. Expanding beyond our dreams when we are consistently feasting on the Word of God. Furthermore, our hope cultivates as we become consumed with the Holy Spirit.Perspectives are transformed by hope as it gives new light to an existing situation. Likewise, it modifies the way we view ourselves, transforms what we value, and affects how we spend the gifts God has graciously entrusted us with such as time and talents.

Practically, how do we remain anchored in hope when our circumstances are screaming give up? When we continue to receive one piece of bad new after another. As mentioned before, we must continuously feast on God’s word. In addition, it is vital to the health of our hope to spend time simply in  Christ presence. Additionally, prayer provides a path to the renewal of hope. Various books, sermons, and worship songs can be an asset. Lastly, we can remain anchored in hope by leaning on Christian friends.

Lord,

Rekindle our weary souls with fresh hope. Fill us with Your HolySpirit. Enable us to have a deeper understanding of Your hope and of who You are. Regardless of what we face enable us to remain steadfast in hope. We praise You for the hope of salvation found in Christ Jesus. Blessed be Your Holy Name.

Amen

 

 

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.

College Chatter #Liberty

Stability. It is something most people crave. A schedule to glide through day after day it might sound boring yet there is comfort in the familiar. When one has stability he or she can  plan to do things.

This is one of those things you don’t realize how comforting it was until it vanished. Stability takes on different meanings for a healthy person compared to someone who is chronically ill. Stability is one thing I currently do not have enough of.

This past May I was able to complete my Associates Degree at my local community college. I had been the first student to complete a degree online. By the way, if a school does not have an established online program I do not recommend going that route. By God’s amazing grace, I was able to thrive, however, there were times of extreme frustration that could have been easily avoided.

I had been hoping that my health would be more stable than it is currently. I am still struggling with abnormal POTS symptoms such as tremors, collapsing, and slurred speech. And of course, battling my immune system.

I am beyond thrilled to be continuing my education through Liberty University’s Online Program. There is a wealth of resources such as touring and an online library . The online program is split into different terms in each semester. There are eight weeks of two or three classes than eight weeks of a different set of classes. I am entering into week two of developmental psychology and contemporary worldviews.

In addition, to the stellar academic program and access to online chapel Liberty also offers an online hangout for online students to interact with one another. It is meant to be a cafe type setting. It  might not be ideal, but I will take what I can get at this point, which I am sure any spoonie would understand, as many feel like they are starving for social interaction.

As a new academic school year arises, I want to remind you, there is hope for every student, there is hope for everyone, even you. “People do their best making plans for their lives, but the Eternal guides each step.” Proverbs 16:9 The Voice In general, we are more capable than we give ourselves credit for. A little encouragement goes a lot farther than imagined and baby steps are actually giant leaps. 

Pictures of The Past

A picture is worth a thousand words along with a few dozen memories and emotions. Capturing the past the heartache of what once was bubbles over.  Sometimes, I avoid looking at my photos, but other days the temptation of a walk down memory lane wins. The days when laughter was plentiful and sleep was not vital.  Staying up half the night with friends was normal. And of course, anything seemed possible. Not knowing that all too soon minor aches would explode into full blown take over your entire life chronic illness.

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I look at the girl in those pictures overflowing with laughter and pure joy. The insecurities going through my mind as a teen now seem silly. Things weren’t perfect, but they appear that way. The past usually seems easier as we look back.  There are still days I miss the people who left me. The friends who said they would be there, but left.

 

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It’s true, you adjust to the chronic illness life, but little things happen that make you grieve your past. I try to not get carried away in the what if I wasn’t sick game or the things I miss. Everyone asks what you miss most, in reality, I doubt any of us can narrow it down to one thing. I miss how active I once was the energy. Being out in the sun or at the ocean. I miss dancing, hiking, and doing mission work. I miss my hair. Not needing to worry about passing out or running to the bathroom. I miss my old bad days.

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All in all most days I do well with being chronically ill emotionally. I have adjusted and know in my heart that God will use all the pain, symptoms, and every other little chronic illness thing for His glory. He has allowed Lupus and these illnesses to be a part of my life, therefore, I am okay with where I am. Yet, I am still human. I become anxious, overwhelmed, grieve, and ride the roller coaster of emotions. After last April, my emotions went on vacation, but they are back and we are learning how to live together once again.

To be honest, most days are hard in some capacity. Currently, this includes minor meltdowns, severe chest pain, dizzy spells, joint pain, and bladder pain. I have another halter monitor (I will do a review- if I don’t throw it in a lake first). A bladder infection with a side of kidney stones. To top it all off my summer class final is coming up. My liver is holding up though I am cautious due to the fact I need to taper off steroids.

This post is a bit long, but I will be doing a Bible Study update post to let you know more about online Bible studies, which I am excited about!

Can you relate to anything in this post? If so, let me know in the comments! You are the reason I share about my life as a spoonie.

My Invisible Fight

If you know me, you know I am chronically ill. My illness does not define who I am but it is a part of me. I look at as a trait not necessarily positive or negative. Like having brow hair, an oval face, or having dimples. My invisible fight. Words that empower. Words that inspire. Words that sum up my life over the past few years.

Without a doubt I have become a fighter, in this invisible fight. Few people know the details of my fight. Chronic illness is much more than what is seen on the surface. The battle is within. Falling apart only behind closed doors.

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I had many encounters with terrible doctors. No one took me seriously (I still struggle with this today). Doctors downplayed any concerns. My mom was my advocate, my voice. Growing up I was dangerously shy. If someone were to look at me crossed I would shrink back into my shell. Hearing my middle name released a waterfall of tears. Speaking up, was terrifying for me. Gradually I began to find my voice and become my own advocate. I have educated myself on treatment options, my illnesses, and everything medical that is relevant. I have learned that I know my body and my illnesses better than any doctor. After all I am the one who lives with it every moment of every day.  I fought to find my voice. My mom and I fought to find good doctors.

My health began to spin out of control in high school. It became evident that something was really wrong. Little by little new symptoms would develop. A new rash, unbearable pain, sun sensitivity, collapsing, weight loss, hair loss, and that was only the beginning. Medical testing became the norm of my life. Blood work that included more than thirty tubes of blood, MRIs, x-rays, GI studies, CATSCANS, scopes, EKGs, EEGS, and other medical tests that I cannot recall the names to. In addition, I had five operations in high school. The operations ranged from removing my tonsils to removing cysts to explority surgery.I thought I had hit rock bottom my junior year of high school, after an encounter with a medication that caused seizures. Little did I know rock bottom was much further down. Little did I know that I would long to go back to those high school years and deal with that pain and those symptoms.

I felt like the pause button has been hit one too many times. I have been home bound many times over the past six or so years. Every time play was hit and I began to recover, get stronger, and move forward pause would be hit yet again. It seems like each time my life is put on pause gets longer and finding the play button becomes more difficult. 

My invisible fight was taken to a new level in college first due to pluricy. Then to finding bloody urine that indicated a sever double kidney infection lasting four months. I was taken off my Lupus medication which gave Lupus permission to recklessly attack. I began seeing doctors every few days, had medical testing weekly, and became a regular at urgent care. I landed myself in the cardic unit last September. I continued to get worse. More testing. More doctors. More pain. Hopeless.

My symptoms shifted. My abdomen began to give me issues again. This time it was worse. Abdominal swelling to the point of looking at least six months pregnant was my newest symptom.  I began to question how much more my body could take. How many more days of intense pain that sent me to bed screaming and doubling over. I was taped. Giving in to the fight was tempting. No one had answers. No one knew what to do.

Things were terrible. Eating was difficult and staying hydrated was nearly impossible. The fatigue was thick yet my body wouldn’t surrender to sleep. I had to rest going up or down the stairs. Breathing was a chore. Shower a hazard. Daily tasks seemed like huge projects. Some days I couldn’t bend down to put on my own socks.

Finally it happened. This past April, I hit rock bottom. I could barely move. The pain and fatigue were more intense than I can describe. I was admitted to the hospital for ten days. https://chronicallyhopeful2014.wordpress.com/2015/05/02/hospitalization/

Looking back I believe that being admitted was the best thing for my health overall. I was at rock bottom. It was more difficult to keep moving forward than I can describe.

When I received the message on Chronically Hopeful inviting me to help and participate in Invisible Illness Awareness week I was shocked and over joyed. I firmly believe that sharing our invisible fight stories is vital. Someone had shared the fight song. I immediately connected with it and shortly after fell in love with the lyrics. I feel like that is where I am in my invisible fight, taking back my life. Taking back life after dramatic pauses is difficult. At times it is painfully slow. Progress seems invisible.  Taking back my life and continuing to fight is a daily decision and struggle. I am mastering a new balance act with my invisible fight and the rest of my life.

My invisible fight has probably been the most difficult fight of my life. I know it will continue to be a tough fight. It has caused me physical pain, heartbreak, taken me on an emotional roller coaster, played tug a war with my faith, caused me to lose friends, and lose much more. Yes, there are countless negative attributions of my invisible fight, but I am sincerely and deeply grateful to be in this fight. First of all I am grateful because I believe that God will use my invisible fight for his glory. Through my invisible fight I have matured as a person and as a Christian. I have learned so much. I have meet some of the most inspiring people. I have had the honor of running Chronically Hopeful and helping with the Invisible Illness Awareness Campaign. My prayer is that my invisible fight will be a testomy, inspiration, and blessing to others.

A Reason Why

Maybe there is a reason

For all the storms in life

For all the tears we cry

Maybe there is a reason

For every season

Why flowers bloom

Leaves glide

Snow blankets the Earth

And the sun warms our hearts

Maybe there is a reason

I’m alive

Maybe I have a purpose

Maybe I could change a life

Have you ever thought maybe just maybe

There’s a reason why the sun rises and sets

Why people go through hard times

Why you’re alive

Maybe just maybe there is a reason why

Psalms 32:7

“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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