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!

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!

Fruit of Brokenness

Today, I have a special treat for you, Melinda from  Fruit of Brokenness.

I had to accept it. But I didn’t want to. I had to accept a term I didn’t like for myself. It’s a label used when someone does something horrific like shoot a bunch of innocent people or drown their children. We use it to describe people who are so out of touch with reality or so far outside societal norms that they make us uncomfortable…

MENTALLY ILL.

If you met me, your first thought wouldn’t be “mentally ill.” I mean, I look like a normal 43-year-old mom of three kids… which means I can look a little crazy-frazzled at times, but I’m not the stereotypical unkempt, wild-eyed, roaming the streets talking to imaginary friends and enemies.

I suffer from Major Depressive Disorder. Sometimes my brain goes sideways.

Major or severe, depression is difficult to explain to someone who has never experienced it.

It’s like walking death. Everything that makes you-you carved out, leaving a gaping emptiness that can’t believe you ever really were anything, especially not anything good. You no longer enjoy your favorite things, or anything else. It’s impossible to believe things will get better; it’s impossible to believe that better is your normal.

Some of you may think that faith in God should make feeling like this impossible, that people who claim to be Christians who suffer depression or anxiety must be doing something wrong.

Their faith must not be strong enough.

They don’t pray or read the Bible enough.

They must have hidden sin.

While all these things can contribute to depression, depression is not just a spiritual issue. When churches approach people struggling with mental health issues as if is all only their fault, it is unhelpful at best, and can be dangerous.

Faith hasn’t cured me.

While a correct understanding of God and ourselves is vital for mental health, it doesn’t guarantee we won’t suffer from depression or anxiety.

Faith isn’t a magic cure-all. As with physical illness, mental illness can strike down believers and dog their steps.

As Paul related in 2 Corinthians 12, I haven’t been able to pray away my thorn. I have medication that is keeping the suicidal depression in check, but I still struggle with depression and anxiety and know it would be dangerous to quit taking my medication.

I have a chronic illness that requires physical, mental, emotional, and spiritual treatment. To attribute one too much importance than the others is unhelpful. There’s a glitch in my brain that affects my emotions, my perception of reality, and my ability to think clearly.

At its worst, I believe that I am beyond grace.

But there’s something awesome about God’s refusal to remove our thorns. Our weaknesses are an opportunity for His strength, and also His grace, to shine.

Paul knew this.

God can heal. God does heal. But God doesn’t always heal.

It’s not wrong to ask for healing, but we must choose to trust Him whether or not He sends it.

Whatever God allows or chooses in my life, I need to let Him be God. In and through my circumstances.

A huge thank you to Melinda for sharing her story and offering hope to others. Please check out Melinda’s blog and social media:

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Fruit of Brokenness on Facebook

Melinda VanRy on Twitter

Melinda VanRy on Pinterest

 

Lupus Awareness Day

Lupus awareness day posts never go how I would like. I always have this awesome vision, but then life happens school gets hectic and Lupus ruins my plans.

Happy Lupus Awareness Day! Get your purple on to show support and raise awareness. Lupus awareness day is about educating people about Lupus and also celebrating those who battle the illness daily with courage. We can only have a future with NO Lupus if we KNOW Lupus. A little education goes a long ways.

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It is hard to know what to say because Lupus affects every detail of my life and those around me. Everyone I know with Lupus has been affected in different ways, but one thing is the same this illness has changed our lives forever. We are not solely define by Lupus, but we are reminded and impacted by Lupus every second.

Our normal as young women with Lupus is very different from healthy young women. Personally, I don’t view my life as abnormal. It’s not until I talk with a healthy friend that I remember I need to adjust the way I talk and that they don’t understand the medical terms I’m using. Having friends with Lupus has given me a sense of normalcy. We laugh, talk, and swap stories like any other twenty-something-year-old.

What is it like to live with Lupus? The symptoms can be overwhelming. It is a lot to take in for a healthy person. It is difficult to explain. Every day is different. For me living with Lupus means joint pain, fatigue, and sun sensitivity daily. Often I have rashes or hives, bruises, headaches, bladder pain, chest pain, and hair loss. No two cases are the same. Lupus is complex, making it difficult for health care professionals, caregivers, the support system, and the person battling Lupus.  With Lupus, the autoimmune system can attack anything.

Take a moment today to learn something about Lupus or talk to someone who battles Lupus, you will be surprised how much you can learn.

Encouragement for You

 

Blessings are all around you though at times they might be hard to see. The fact that you woke up this beautiful morning is a blessing. You are a fighter with a sparkling and breathtaking personality. If you are able to walk on your own that is truly a blessing, but if you cannot and you have a walking device that is a blessing as well. Your senses are a blessing as well as all the amazing things your body accomplishes without you taking notice. Those that you hold dear to your heart are blessings so is every moment that you spend with them.

Not only have you received a great abundance of blessings but you have blessed other without even knowing it. You have been a blessing by welcoming a new person to your group of friends or your church. You have been a blessing by reaching out to a friend who was lonely. You were a blessing simply by being present and listening while someone was having a difficult time. Your life story and the story of how you have battled you illness has inspired many. It has given people hope, strength, courage, and peace. Many more people will be inspired by your story and blessed by your compassion. You have impacted more people than you are aware of, you matter to countless people more than you know.
Reflect on all the priceless blessings in your life and encourage someone in your life.

Six Months

Today is my six month anniversary from being admitted to the hospital where I fought for my life. In addition, it has been six months since I have been in urgent care or the ER. This is the longest time I have stayed out of the ER or urgent care in seven or eight years. I never thought I would be able to say that I stayed out of urgent care for so long. Things have slowed down with my health. During my last major flare up typically I had a doctors appointment, medical testing, infusion, or an urgent care trip at least once a week. It was time consuming and draining.  I feel extremely blessed and grateful to be where I am now. I am also grateful for the medical professionals who cared for me, helped me, and continue to be on my case.

Hitting rock bottom with my health at the hospital was daunting. I can vividly recall, a chatter box doctor going over my medical history and medications several times. Then explaining I shouldn’t be in pain and implying that I should be in much worse condition (not that a 10 on the pain scale is in good condition). No one enjoys hitting rock bottom, but it was a blessing and a turning point. Though there are many negatives associated with steroids, they saved my life. Now they are helping me get stronger and hopeful begin to live again. (Yes, I am tapering.) I know I have said it before, but it is worth repeating, being admitted to the hospital was a blessing.

It is mind blowing for me to be able to say I have not stepped foot in urgent care in six months. I am beyond excited. Today, I am celebrating this victory. My mom and I are spending sometime together. She has been my caregiver and source of support and strength so I am blessed to be able to spend the day with her.

But You Don’t Look Sick

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“But you don’t look sick..” A saying that chronically ill people hear way too often. For those who have recently meet me I look like a normal 21 year old girl. But my family and church family are able to see the difference in me.

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The girl who stares back at me when I look in the mirror is someone I do not recognize. That girl is not me. She has a rounded face, pale skin, thinning hair, and tired eyes. I am…or in reality was a girl with dark olive skin, bight and energetic eyes, thin, and tall with thick dark brown hair that most people mistake for black. I have changed drastically sense becoming ill. I am not the same girl physically or emotionally. Not all the alterations have been negative. It is difficult sometimes to be so different compared to who I was before I became ill. Medications have altered my body somewhat, but the majority of the physical changes are due to Lupus. At times looking through photos is difficult. I like who I have become. But the physical changes are hard to grasp. My body doesn’t feel like my own… it is like borrowing something that doesn’t fit right. Appearance doesn’t matter as much as it use to. It is more about feeling healthy and functioning; living again. I try to focus on this and the hallmark of what inwardly make me, Victoria. Some days it works amazingly. With no make up and hair up I feel like myself and I feel pretty.  Other days, are more difficult after layers of make up and many spoons wasted tears of frustration wash it away.

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“But you don’t look sick..” is never a comforting phrase. People might think it is a compliment, but it is not. It makes us feel like you do not believe how sick we are. Our outwards appearance, does not reflect the war going on inside of our body twenty four seven. Thankfully the destruction is not visible.

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Those who are chronically ill learn all the make up, clothing, and hair tricks. She learns to fake a smile. To be a ray of sunshine. To pretend to be a healthy girl. Behind closed doors, everything is different. The make up comes off, the hair goes up, pj’s on, and the tears flow. With her head buried in her pillow she wonders how she made it through another day thankful no one saw though her mask. Insiting that she doesn’t look sick only adds to her struggle. Your words weigh more then you know.

Your world drastically changes in every way possible when you are chronically ill. It is like living on another planet in comparison to how thing were when you were healthy. Adjusting is difficult. You need to be patient with yourself. Allow yourself time to adjust to all the alterations your illness has imposed. Remember, that there is much more to you then the person looking at you in the mirror. Yes you might look different and that is okay, you are still beautiful. In addition to physical beauty, you have a stunning personality.

How do you cope with the changes your illness has caused?

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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.

Invisible Illness Awareness Week

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There is more than meets the eye, don’t judge a book by its cover. Sayings we can spit out weightlessly in a moment notice. Our brains have memorized the words yet in many situations do not comprehend the depth of these words. Riding through the motions of life we jump to various conclusions based merely on what our eyes rely to us. We are quick to jump to conclusions and far too judgmental.

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Invisible illness awareness week is essential. “But you don’t look sick” is one of the most over used phrases in the Spoonie world. Our outward appearance does not clearly display the war raging inside our bodies. Many individuals with chronic illnesses lose their friends, are treated poorly by family members, and receive rude comments from strangers. There is a lack of understanding and a lack of empathy. People make assumptions based on appearance and many times are unwilling to listen to what is really going on with an individual who is ill.

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Invisible illness awareness week is a campaign founded by Lisa Copen over ten years ago. Lisa is the inspirational founder of Rest Ministries.  Invisible illness awareness week empowers those who live daily with a chronic illness.  Additionally it raises awareness for countless invisible illnesses. “96% of chronic illnesses are invisible.” This campaign strives to make the invisible…visible. While an individual might not see our illness that does not make it any less real. It is very real. A battle that must be fought without ceasing.

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My heart is heavy with passion for the invisible fight. Raising awareness for chronic illness is vital to me. I believe that educating people about chronic illness is essential. Knowledge is power. Educating people who don’t have illnesses enhances their empathy for those who battle chronic illness daily.

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The campaign and raising awareness in general impacts those who are chronically ill as well. It is empowering. It also encourages those who are chronically ill to keep fighting. Raising awareness reminds people that they are not alone, they are not the only one struggling with illness and the challenges it presents.

I feel obligated to share my story and assist others with chronic illness in any way possible. My hope is that others will be encouraged, learn, and find support through my openness. I am bursting with excitement for invisible illness awareness week. I hope you will join me in learning about invisible illnesses, celebrating those who have overcome obstacles their illness has presented, and sharing inspiring stories. Together we can put a stop to the assumptions of invisible illness. We can make invisible illness visible.

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This year invisible illness awareness week is September 28th – October 4th. The theme is My Invisible Fight. I will be posting invisible illness awareness things here and on my facebook page Chronically Hopeful through out the month.

Join us on Facebook:

https://www.facebook.com/InvisibleIllnessWeek/timeline

https://www.facebook.com/chronicallyhopeful17?ref=hl

There are many effortless ways to get involved in invisible illness awareness week. Check out and like both the invisible illness week and chronically hopeful facebook pages. There will be a wealth of resources on each page daily. Uplifting pictures will be shared, beautiful stories, and articles. There will also be online conferences throughout the week.

http://invisibleillnessweek.com/

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