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!

Saline Update

I got my second round of Saline at Chronic Care earlier this week. This time I got two liters over about four hours. It was much longer than I had expected. The staff there was fantastic. The doctors have set me up to have someone come in to do a safety check in my house to accommodate things for when I fall and I got another neurology referral.

I was impressed with my results following my first Saline treatment. I was able to shower without feeling dizzy, walk in the store twice, and did not fall for a week. Pretty amazing stuff! It was a 90% improvement with that treatment.

During this infusion of Saline, it was noted that my blood pressure had drop fairly low-mid 90s /60. I do feel a big difference, but some dizziness most likely blood pressure related. The dizzy spells improved about 75- 80% this time which is still excellent.

I have another infusion Monday. Then meet back up with the doctor a week later. It is a very promising treatment at this point in time, which I am hoping to continue.

Back to College: Organization

New Year. New Semester. School break has a habit of flying by. This is my second semester at Liberty University Online. Once again, I am taking twelve credits. The first eight-week term I am taking  Introduction to Christian Counseling and Psychology of Personality. The second term I have Philosophy and Physiological Psychology.

My plate is full, in my personal option. I have my Remicade infusion at least twice this semester, two follow-up appointments, and a new doctor visit. Additionally, as you know I assist in leading two Bible studies online as well as running a weekly event Bible Study Live. I teach Sunday School and assist as much as I can with the children Thursday evenings. Of course, I spe nd time talking to my friends, reading, time with my family, and working on Chronically Hopeful.

Even with being busy, I keep school as a priority. I have gotten school planning down to an art more or less.  Organization is key. I am thankful that my professor upload the syllabus the Wednesday before classes begin. This gives me plenty of time to do my insane planning. Once I have printed the syllabus and class schedule out I write down my two-week goals list.

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Just a free printable I found on Pinterest.

Around Sunday I write down in my planner what needs to be done each day. Currently, I have The Happy Planner. I decorate the pages with various colors, stickers, and Bible verses. From there, each night before bed I write everything on my white board so that I don’t forget to look in the planner for what needs to be done. It might seem a bit complex, but it works.

If you already have your textbooks for classes, I recommend at the very least scanning the first two chapters. Ideally, if time allows read these chapters, you will thank yourself later.

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Lastly, I want to share with you some Bible verse that I am praying over this semester.

“He has filled him with God’s Spirit, gifted him with wisdom, understanding, knowledge, and skills with a variety of crafts” Exodus 35:31

“The wise will pay attention to these words and will grow in learning, and the discerning will receive divine guidance” Proverbs 1:5

“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

 

Uninvited Devotional Two

Many wonderful people in the Bible felt left out, lonely, and less than. Uninvited, as we do today. I just began reading The Friends of Jesus by Karen Kingsbury where one of the main characters is Simon the Leper.  Talk about major rejection!

Most of us have heard the term leprosy in the Bible, but how much do we truly know about it? Probably a little less than we would assume. Leprosy is a bacterial infection, it is also known in the medical field as Hansen’s disease. It is slow progressing. It is also called chronic though today there are treatments and it is listed as curable. One treatment option, of course, is none other than Prednisone. Some symptoms include but are not limited to pain in joints, pain in the skin, changed in skin color, tumors, nerve injury, weight loss, and organ damage.

In Biblical times, treatments weren’t available, therefore people who contracted this illness were sent to live in a leopard colony.  Leopards were viewed as sinful. They were seen as unclean. In addition, to the physical pain, those inflicted with this disease encountered deep emotional wounds. They were treated as if they were dead by those they cherished. They were isolated by the community they dedicated their lives to.

“Large crowds followed Jesus when He came down from the mountain. And as Jesus was going along, a leper approached Him and knelt down before Him.Leper: Lord, if You wish to, please heal me and make me clean! Jesus (stretching out His hand): Of course I wish to. Be clean. Immediately the man was healed. Jesus: Don’t tell anyone what just happened. Rather, go to the priest, show yourself to him, and give a wave offering as Moses commanded. Your actions will tell the story of what happened here today.” Matthew 8:14 The Voice Translation

Walking through chronic illness and the rejection that accompanies it is a challenge. Healing does not always come in the way we expect, but the blessings may be larger than expected and God will receive glory from our story. You might feel like a leopard; an outcast, but you are the most beautiful princess in the Father’s eyes. You are a Blood Bought Baby Girl of Jesus Christ and He has a beautiful purpose for your life. I hope you are learning how to live loved.

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Helping Other Despite Illness

Before stepping into my currently reality, I was able to serve others regularly. I was able to help at free dinners, do yard work, mission work, help out with a retreat, youth group, and a few other small things. I love to help. I figured I would only need to step back slightly for half a season due to my health (mainly due to getting answers and five operations in four years). However, that was not reality. My limitations weighted me down as I realized how I had been serving was no longer an option physically. The desire to be used burned with in as I pleaded with God to use me in any way. This is still something I am working through.

I adore running Chronically Hopeful, but there are days it doesn’t seem like enough (there is plenty of work, but I wanted to serve more).  Most of you know that right now I am leading with a few other women two online Bible studies. I have also joined the ministry team for my online Church.

When God lovely nudged my heart to lead Come With Me, I attempted to tell Him I was too busy. Can you guess who won that disagreement? He did hands down. One of the chapters we are reading this week is about Jesus’ presence in a storm, specifically when the disciples woke up Jesus in a panic followed by Jesus simply rebuking the storm.

We all encounter different trials in different seasons of life. Trials come so that God can discipline us, mold us, enable us to comfort others, and bring us closer to Him all while bringing glory to His name. The Bible calls us to carry one another’s burdens. Do you know of someone in a trial? Trials are demanding. Support is essential during these times.

Most people who follow Chronically Hopeful are chronically ill, so the remainder of this post is written with you in mind. How can I support someone when I am physically limited? It can be intimidating to offer help when you feel flawed. You might be turned down completely, I have been many times, but that’s okay. Offer whatever you have to God, “not enough becomes more than enough when we give it to God.”

Keep in mind the little things make a big difference. Everyone needs encouragement. The simplest notes of encouragement go a long ways. Use Facebook, e-mail, or snail mail. A short note with a Bible verse or a line or two are excellent ways to start. If you want a little more of a challenge write an entire letter and be personal.

Find an in person project that is short term and can accommodate you needs. This might be assisting in the nursey at church, being a greeter, making a meal for a family, or helping a child with homework in the neighborhood.

There is nothing like being in person, but at times illness traps us either keeping us homebound or sucking the energy (and spoons) out of us. Volunteer online. I know at first it is a strange concept. Support groups can use help with events or managing pages or responding to comments. Online Bible studies are another option.

Do you find it difficult to reach out and help others? Share your struggles. Share ways you have been successful in this.

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Uninvited

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Less than. Left out. Lonely. Rejection wasn’t new, yet this time, it would be less painful to rip my heart right out of my chest. I poured out the emotions, “God they promised they wouldn’t leave me. How could they?”I had spent plenty of time wandering the playground alone or reading my Bible in silence at lunch. I figured shedding the shell of shyness was key to overcoming rejection, to leave behind those times I was uninvited.

Entering into college I felt like I was on top of the world socially. I had my youth group, the teens from the retreat I passionately poured into my high school years, and the girls on my floor. (Of course, finding a guy friend in order to get a ring by spring couldn’t hurt. Just Kidding! If you don’t get that joke go find a kid who goes to a Christian college.)

I was hopeful that even though I had chronic pain I would soon have solid answers to it and a treatment plan. Steroids don’t make life as a college girl easy. Emotions explode pretty much everywhere in a confused mess. Nothing was going as planned but it could only get better, or so I thought. Thanksgiving weekend I found out I had a triple (Yes I have three kidney’s) kidney infection that was severe lasting a total of four months.

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I had always reached out to a particular group of friends checking in on everyone. I figured if no one heard from me someone would check to see if I was alive. I desperately wanted to just have a conversation about anything. Once someone reached out it wasn’t in a loving manner, leaving me in tears. From that conversation steamed rejection from a group of Christian friends. I felt unwanted, isolated, and brokenhearted.

It is a few years later as I sit on my bed writing this. My life is anything but typical.  God is on the move in my life providing me with a small group of friends who I cherish dearly and like a weirdo I do point it out to them that I am thankful they are in my life. The Lord is providing me with women to pour into through online Bible study, which I am forever grateful for. He has blessed me with the stability and faithfulness of my mom who has refused to walk out or give up. There are many days- even in those ‘safe’ places where I feel less than, left out, and lonely. Rejection is a knife leaving a deep scar regardless the colorful story attached.

Past rejections impact daily life more than we are aware of. Making us self-conscious. We throw up walls and harsh words out of fear. It seems at times we girls take things to heart a bit more.

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I would like to personally invite you to an online Bible study featuring Lysa TerKeurst new books Uninvited.

“In Uninvited, Lysa shares honestly from her own struggles with rejection and gives readers concrete truths to combat the lies our old Enemy hurls our way. You can stop feeling left out, because even when you are overlooked by others, you are handpicked by God. You can change your tendencies to either fall apart or control the actions of others by adopting healthy ways to process your hurt. You are designed for a love without limits, a love that will never let go.

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With biblical depth, gut-honest vulnerability, and refreshing wit, Lysa helps readers:

  • Release the desire to fall apart or control the actions of others by embracing God-honoring ways to process their hurt.
  • Know exactly what to pray for the next ten days to steady their soul and restore their confidence.
  • Overcome the two core fears that feed our insecurities by understanding the secret of belonging.
  • Stop feeling left out and start believing that “set apart” does not mean “set aside.”
  • End the cycle of perceived rejection by refusing to turn a small incident into a full blown issue.”

This Women’s online study will dig deep into God’s word, build lasting friendships, pray with one another, in addition to reading and discussing the book.

Even when you’re overlooked by others, you are handpicked by God.
This post is part of Lysa TerKeurst’s Uninvited Book Blog Tour which I am delighted, excited, and honored to be a part of along with many other inspiring bloggers. Make sure to check out http://www.uninvitedbook.com.
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To RSVP: Please e-mail: hopefulspoonie@gmail.com
I will be assisting in leading two studies with the book. The first is God-Living Girls. God-Living girls is for women God-Living Girls is for women with chronic illness and/or pain. The book will be completed alongside Proverbs 31 Ministries from September 6th- October 14th. I highly encourage all teen girls and women to check out God-Living Girls even if you aren’t interested in the study, the group has a lot of excellent resources.
The second group also meets  in a private Facebook Group, which you will be able to join starting August 15th. We will begin September 6nd as well, but we will be doing the study at a slower pace for about ten weeks. Feel free to ask questions!
Please share!

More Than an Accomplishment

Good Morning Warrior,

We compare ourselves from the time we rise in the morning till our head hits the pillow at night. Comparison feeds us lies. Consumed with thoughts of never living up to expectations. Negativity becomes the dictator of our day.

Your identity isn’t in the tasks you accomplish. It isn’t in the things yu can or cannot do. Your identity isn’t the symptoms, pain, medical test, or diagnosis. It isn’t rooted in other people’s options or the things you have loss. You are not defined by any flaw.

I wish you could see what I know, the beauty that radiates from your heart and the way your smile glows. The hope that you anchor in others. You are cherished, valued, and worthy beyond words. Your purpose is amazing. You are making a difference. You are changing the world. Keep pushing forward- even if you crawl go forward. You are stronger than any trial. You are not alone. I am cheering you on and wishing you a wonderful day.

Sending Spoons,

Victoria

Silence So That…

Just a note before I begin, this post goes with the book Living So That By Wendy Blight and is specifically written for the online Bible study that I have the honor of assisting with.   With that being said, even if you are not in the study and have never read the book I strongly encourage that you read this post.

Are you going through the motions in your prayer life? I know life is super busy, your lucky that you have a few spare moments for a quiet time. We know that prayer is a dialog, not a monolog that we are so often tempted to have. We know from the Bible that God speaks to His people. He speaks to us in many ways such as dreams(Joseph), the Bible, other people(Moses spoke to Pharaoh) , an audible voice (Samuel or Moses), or a gentle nudge at the heart.

To sit with the Lord in prayer is powerful. Putting anxiety to rest and our chaotic thoughts to rest. Just being present in The Savior’s arms. Allow Him the chance to renew you. Allow Him the chance to speak to your heart.

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Around the time I was seventeen years old I had the privilege to travel to Taize. Taize is a retreat also known as a pilgrimage with over 5,000 teens and young adults from around the world held in France. This is where I encountered silence. This is where I encountered God’s nudge on my heart. This is where I encountered a deeper relationship with Christ. Worship was three times a day accompanied by eight minutes in silence.

Towards the end of my stay there, our Bible study leader asked us to spend an hour in silence. Let’s experiment and see what it’s like to spend an hour in silence.

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Just kidding! That never gets old. I know the look on your face was priceless. Anyways back to my story. After being told to go find a place to spend in silence, I ventured down to a place called the source. Its beauty is breathtaking. When you breathe in it’s as if you are breathing in peace and when you breath out along with the breath that escapes your lungs all your worries vanish too.

The time there flew by. That is where I let go of many things. Surrendering the future and letting go of the past.  Where God called me into ministry, though I am learning that word is used to describe so much more than pastoring. I cannot fully captive in words my experience with God in silence. The peace surpasses all understand. The joy is unthinkable.

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God speaks to us today. We need to have ears that hear and we must be intentional in seeking His voice. “Planned times of quiet and solitude are a good balance to a busy life. Cultivating a heart of prayer helps you see God’s perspective and to more fully experience His presence throughout the day.”

My challenge to you precious friend is for you to take two to five minutes of silence at least once this week. Silence is a break from the chaos of life, a chance to reconnect with God, and to worship Him in a new way.

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.