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!

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

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

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

 

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

By: Aliccia Rico

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

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

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

 

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

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

 

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

 

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

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

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

 

Remember, when you are weak, you are powerful.

 

Meaningful Words

This poem is dedicated to all the courageous chronic illness and emotionally ill people who have tragically lost friends. To all, those who have encountered broken promises. You are so much stronger than you will ever understand.

Meaningful Words:

Don’t say I love you

If you’re going to walk away

Don’t say you care

If you’re not going to be there

 

I have heard it all before

No strength to listen to the lies anymore

You can just walk away

No one is making you stay

 

Walked out in my time of need

Refuse to plead

Don’t say you care

If you’re not going to be there

 

I am strong I will

I will just move along

Surviving without you

There is nothing I can do

 

 

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. 

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

His Faithfulness

The Lord is faithful even when you don’t feel Him near. He is with you. He is faithful even when your body betrays you. Providing strength. Teaching you to be dependent on Him. He is faithful, as the emotions run wild. He is faithful even when the doctors fail. When isolation traps you. When your world is falling apart.

The Lord is faithful in the smaller and bigger ways than you can imagine. His faithfulness surpasses all understanding. Great and beautiful is His unending faithfulness. He is our hope. Comfort. Provider.

Allow, Elohim God our creator to knit your heart to His. He will guide you on the path He designed especially for you before air kissed your lungs. Depend fully on Him. The storm will rage, but you have a secure and faithful anchor. Fear has no place. In Him, you have sweet victory. His faithfulness remains the same.

Rest

We live life in the fast lane; traveling full speed ahead. Over commitment boils over. We tango with multitasking racing to complete an over zealous achievement list. Our to-do list, family, friends, and much more scream for attention demanding more consistently, simpling depleting us physically, emotionally, and physically. Neglecting much we push forward running on empty. In addition, we feel like we might erupt from stress at any moment.

We need rest as desperately as we need our next breath. Not just physical rest but also emotional and spiritual. Time to reconnect in a meaningful way with our Abba (Our Heavenly Father). We need to be intentional about spending time rest in the Fathers arms. Not giving ourselves excuses about being too busy. Life goes smoother when we rest in the Father and connect with Him.

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Will you sweet friend come to our Jesus now? Don’t wait another moment. Unload all the burdens on your heart, keeping in mind that nothing is too big or too small for Him. Pour every sorrow, burden, and emotion out to Him. Sit quietly in His loving arms as He frees you from the burden and reminds you of His everlasting love. Whatever is burdening you, the Lord will walk through it with you through it won’t be easy, but He will provide for you every step.
He calls us, Come to Me, all who are weary and burdened, and I will give you rest.  Put My yoke upon your shoulders—it might appear heavy at first, but it is perfectly fitted to your curves. Learn from Me, for I am gentle and humble of heart. When you are yoked to Me, your weary souls will find rest.  For My yoke is easy, and My burden is light.” Matthew 11:28-30
He will give you rest and renew your soul. Pour out everything in prayer than allow Him to pour into you through His word, devotionals, other people, or simply by being in His precious presence.
Father,
We come to you emotionally spent and phsyically tired. Help us to unload our burdens to You in prayer. Renew our hearts. Fill us with Your comfort. Allow us to be yoked to you and to find our rest in you. Thank you for your love and for being our provider. Help us to grow closer to you each day. Amen

Brush of Wings: A Book Review

I had the honor of reading and reviewing Brush of Wings, which is the third book in the  Angel Walking series by Karen Kingsbury. The first two books were beyond excellent. The concept of the book reminds me of the television show Touched by an Angel. Reading the first two books is the only way this book will make sense.

I love how Karen Kingsbury keeps Christ as the main focus of the book. You see the characters wrestle with God and strengthen their relationship with him. The reader also sees the struggles the characters encounter as well as how they cope with it as young adult Christians.

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The characters come to life! Completely amazing.  Mary Catherine is a young woman with a passion for serving the Lord. She is full of life.She had a medical condition, however, she refused to tell anyone. Her health spiraled out of control. Despite warnings from her doctor, she ventures to Africa on a mission trip. Her best friend is Sami..\ Marcus Dillinger, is possibly the most persistent and patient guy. He pursued her with all his heart, praying for her daily. He crosses oceans to try to save Mary Catherine when she became critically ill, on deaths door step.

I truly felt a bond with Mary Catherine because of her medical condition and her passion for mission work. She, like most of us with an illness didn’t want to be a burden or to worry those she loved. She hid it so well that it caused a tragedy. The reader sees the struggles of all the she faces due to her condition. Again, most of us with illness can relate to this, illness changes lives no matter how hard we fight it.

The four friends have been on countless adventures, but this book topped them all. There were surprises and excitement in each chapter. They assist in running a teen program for teens involved in gangs.

“The team of angels walking is busier than ever in this epic battle between life and death. A Brush of Wings is a poignant tale of love, sacrifice, and the power of faith” (Kingsbury).  The team restlessly and fervently prays for each of these people and for an unborn baby who will one day impact America. He will be a modern C.S. Lewis. Each angel appears in human form to assist with the storms. In addition, the angles battle demons that the people are unaware of.

The ending was amazingly unexpected and perfectly beautiful. The biggest disappointment is that this is the last book in the series. Though the book is fiction Karen Kingsbury writes a book that does more than entertain. It also helps the reader grow in faith and in their relationship with Christ. I love how she includes scripture throughout the book as well.

The Problem of the Semester

Introducing the problem of the semester. Each semester I seem to run into at least one big obstacle with my health. Lupus doesn’t think college is eventful enough.

After coming home from the hospital, I collapsed, at least, four times from POTS landing on my right hip. Needless to say, I was experiencing hip pain. It was determined that I didn’t break anything. Even so, the pain was getting worse. I knew there was something wrong.The concern became that it was possible my body wasn’t providing enough blood to the bones in my hip. That could cause a bone or tissue to die. My doctor sent me for an MRI which revealed a growth along with some torn cartilage. Now I am waiting to see a specialist to see what the next step will be. Waiting is one of the most challenging things. Not being able to do much for the pain and not knowing what they will suggest to do for the issue at hand.

With Lupus, there is hardly ever a dull moment. I think about my friends with Lupus and everything they go through because of this illness. It can feel like you are just overcoming one obstacle and boom there is another. At times, it is difficult to process everything that is happening. We get use to dealing with certain things like blood work, but additional obstacles don’t become easy to deal with.It threatens our Lupus normal and can cause stress. This is one reason it is vital to have a support system not just of encouraging people but also of others who are dealing with chronic illness. Those  of us with chronic illness have a different perspective and provide a different element of support to one another.

At times, people tell us how we should react to an obstacle or tell us the ‘magic’ cure. If you are also facing a health obstacle it’s okay to feel emotional or to feel fine. Your emotions are not wrong. You have enough strength for whatever you are going through. Wishing you all a wonderful afternoon. 🙂