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!

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When Chronic Pain and Illness Take Everything Away: How to Mourn Our Losses

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When Chronic Pain and Illness Take Everything Away: How to Mourn Our Losses is a practical book for anyone who battles a chronic illness or chronic pain. Esther is an inspirational individual who has thrived in many aspects of life despite chronic illness, without a doubt she is a role model. Reaching out as a compassionate friend she gently teaches her readers about the grieving process and coping with chronic illness and chronic pain. She is transparent with her faith journey as well as her struggles and victories.

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Grief is an overwhelming aspect of chronic illness that threatens to take over. It breaks a person down. Those facing chronic illness and chronic pain grieve the person he or she was before the pain, their past, broken relationships, shattered dreams, and the person they had hoped to become. Chronic illness alters every element of life. At times, with the pain and additional symptoms, those with chronic illness don’t want to deal with the emotions. However, emotions are healthy and a part of life.

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Personally, the emotions tend to hit me like a ton of bricks in a delayed reaction. Grief with chronic illness was no different. I get consumed with daily life not processing what I am going through on an emotional level. Maybe you can relate. Once the emotions hit it is overwhelming. I officially got my diagnosis in my late adolescent years. I took a season to grieve all the things I missed out on like prom and mission trips I had planned out. That season I grieved the friends I lost.

I have worked through a lot of the grief but there is still some work to be done. Support is essential when working through it. This book provides a positive outlet for grief. One of my favorite things is that there are writing prompts to assist the reader in constructively working through emotions.

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Amazon description: “Chronic pain, illness, and disability take so much away. Sometimes it seems as though they take everything we have ever loved and held dear.

Our physical abilities and our jobs. Our current passions and future dreams. Our finances and our friends. Our sense of community and our ability to engage the world in ways we could before.

Chronic pain takes away our sense of self and who we always thought ourselves to be. How in the world are we supposed to deal with this fact?”

Make sure to pre-order your book here! In addition, feel free to drop by Esther’s blog: Life in Slow Motion.

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

Memories Replay

Memories replay

Of dark gray days

Standing in the rain

With all the pain

Never forget

Every moment that took your breath away

When there was nothing to say

The scars are still there

Know that he cares

Safe in his arms

Away from harms

She told her everything will be okay

Sun will start shining brighter today

She is loved and accepted that’s where

She belongs

They’ll help her thought the rain

Five C’s of Coping with Stress

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Stress comes with chronic illness.  Get one chronic illness and receive more stress than you dream possible at no extra cost! Not the type of deal I was hoping to receive. We all know that stress is bad for us, especially for our illnesses though it is nearly impossible to avoid. Like pesky mosquito on a summer day.

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There is stress at work. Stress at school. Stress at the doctors, the pharmacy, with the insurance company, and stress from the endless testing. There is stress at home when the kids constantly bicker. Stress from the medications. Stress from the endless bills. Stress from the pain. There is no way to just avoid stress. Therefore we need to cope with it and this is not always an easy task.

The five Cs of Coping with Chronic illness Stress: a short guide.

Cry

I have always been an emotional girl. Look at me the wrong way and I’ll start to ball my eyes out. Crying is a wonderful and healthy way to cope with stress. Releasing the tears can help the body work through stress and regulate various levels in the brain. A good deep cry can assist in coping with stress.

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Cuddle

Who doesn’t love to cuddle?!? I mean seriously, what is more comforting then grabbing your furry friend and spending some quality cuddle time? Cuddles and hugs come with extra health benefits besides being awesome for stress like lowering blood pressure.

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Coloring

Yes, color. Your favorite childhood pass time is not only acceptable in adulthood but it is recommended and healthy. “When coloring, we activate different areas of our two cerebral hemispheres, says psychologist Gloria Martínez Ayala. “The action involves both logic, by which we color forms, and creativity, when mixing and matching colors. This incorporates the areas of the cerebral cortex involved in vision and fine motor skills [coordination necessary to make small, precise movements]. The relaxation that it provides lowers the activity of the amygdala, a basic part of our brain involved in controlling emotion that is affected by stress (huffingtonpost).” The bottom line? Coloring is a creative way to combat stress.

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Chatter

Call up a close friend and vent away. Letting it all out helps.

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Change

A change in scenery can make a difference. If you are able go for a walk, go over to a friends house, or to your favorite coffee shop.  Go some where different and engage in a different activity.

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Share how you cope with stress.

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.

Emotions & More

Emotions can very well be our best friend or our worst enemy or somewhere in between. They change rapidly many times without warning. Adding any medication provides them with an excuse to run wild within. This is downright difficult to cope with. Not only do our emotions run wild but some medications change how we physically appear which can be just another reason we beat ourselves up. We are many times our worse critics. Over analyzing and negatively speaking to our selves. God did not create us to be hated. He is love, he crafted you through and by his love. By his love and grace you were saved. He does not want you in toxic, abusive, or negative relationships. Like wise he does not want you to be consumed by shame and negative self talk.

So much has changed for me sense becoming ill. One physical trait that sticks out like a neon sigh is my lovely moon face. I hated it in the beginning, I was extremely self concuss. Now I am by no means saying that I love it now however I have learned to accept it. More recently I have encountered abdominal swelling which makes me look six months pregnant. The swelling is daunting. Every time I get ready to leave the house the gruesome thought meanders into my mind, what if a some asks if I am pregnant or just asks how far along I am. The things complete strangers come up and say can be mortifying. I struggle with surrendering this completely to the Lord; leaving it in his hands. I give it to God, then go right back to worrying. Letting go and letting God completely be in control of anything is a struggle. As humans we crave control. We try to make sure everything is in place and unfolds according to our plans. We also worry. No matter what physical or emotional changes we encounter God still loves us, we were created in his image. He understands the changes we are facing and he understands our frustration.

Everything here on Earth is temporary, even the side effects from our medication. Coping with physical changes is a challenge, however you are not alone on this journey. Frequently, we feel isolated. We digest the lies that no one understands, no one cares, we are worthless, and unlovable. It is worth repeating, God is with you on this tragically demanding journey of life with a chronic illness. He never leaves you side, not even for a brief moment. He wants you to depend on Him every moment of every day. To depend on him when you have an abundance of spoons, joy, and laughter. To depend on him when you cannot go a step further consumed with debilitating pain and weakness; as you endure medical procedures.

Being wrapped up in life, you might neglect to acknowledge that there are other Spoonies out there. We understand your frustrations, symptoms, struggles, and your journey. Our understanding is incomplete only in the sense that our story varies from yours. We try to provide the most understand, support, and encouragement to one another.

There are countless things to attempt to cope with while chronically ill, it becomes overwhelming quickly. You my friend are doing an amazing job. You have achieved more then you ever expected. You are a warrior. Though the road might be long it is filled with beauty and blessings. All these things will soon pass and only remain as a mere memory. Medications and chronic illness might alter aspects of you, but you are still you. You are stunning inside and out, a true work of art with a breath taking purpose.

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

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

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

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

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

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

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

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

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Too tired for a good title

It is challenging as a chronic illness blogger to find that ideal balance. To be transparent with out being TMI. To share honestly without coming off as complaining or looking for sympathy. To share not only about the battle with Lupus but the journey of life. To offer support without being overly optimistic or coming off as being nosy. I know other spoonie bloggers must encounter some of these challenges.

Lately, I have posted a lot about Prednisone. This was not something I planed. I have posted about it because I know a lot of people are forced into the wind whorl of Prednisone confusion. I feel like I never fully adjust to Prednisone. Once I am close enough to adjusting the doctor says Lets Tapper.

Tapering is great. Really. I fully understand why coming off prednisone is positive. I understand the side effects. On the other hand I do not want to experience intense pain that cannot be put into words. Pain so deep and intense that I cannot breath properly, cannot lay down, and can barely sit. When that pain invaded I wanted to cry or scream but I could barely get enough air into my lungs to speak. I don’t want to become so weak that I cannot get out of bed. So weak I can barely walk. So dizzy I using the stairs alone or showering is a hazard. I have been sick for so long. Borderline critically ill three times in two years. I cannot bare the thought of going backwards with my health anymore.

Personally tapering to fast, even on high doses of Prednisone is not a good idea. I had expected to taper when I saw my doctor. I had my entire schedule figured out from the dosage to what to eat on which days. My plan was flawless, leaving plenty of time to adjust before school began. I had anticipated 10 mg taper. Well that was not on my Rheumy agenda. 20 mg taper. 6 weeks. It didn’t seem to bad at first. Then reality slapped me in the face there is not enough time. This taper is going to fast.

With determination I pushed as hard as possible to get on the lowest dose possible. I am still paying for it. I made it to 35 mg. I am hoping and praying that my body can regulate its self somewhat and quit throwing a tantrum over the next few weeks. Tapering more now would only do harm.

I am blessed that my doctor increased my methotrexate, sadly the increase was only by 2.5 mg. Methotrexate has made a positive impact on my health. I have seen good days because of it. It seems to take a while to kick in then wears off too quickly.

I have encountered a sticky mix of side effects and/or addition symptoms. I am either a hungry hungry hippo or have no appetite at all. The struggle with food still remains. Thus so does the struggle with weight and water retention.  I have begun losing my hair again. With the combination of medication, not having Benlysta, and my Lupus it was expected, I just didn’t know when it would start.

Without a doubt my pain has increased. I am thankful that it is bearable, it is not as bad as when I was in the hospital. My joints, back, chest, and stomach are acting up the most currently. The liver pain visits briefly. I also have difficulty breathing at times, not like asthma though. I think it is either POTS related or liver related. My sleeping schedule is like the merry mixer ride. Then there’s the lovely fatigue we all have. Most times it seems impossible to treat.

With the shift of medications I have had to once again break up with my to do list. Like most people with a chronic illness I hate resting and feel guilty for it, but I know it is something I need to do. I need to do what my body needs me to do in order to feel a little better and to prepare for next semester. It is all part of the fight to stay out of the hospital.

Today was a mild (I use the word mild lightly)  flare day. I woke up with no appetite at all. No big deal; I just grabbed an ensure. I went up the road this morning to have blood work done. My veins had a nice vacation from needles. I did not expect to be stuck with the needle half a dozen times (or more, I lost count). The same lady does my blood work monthly. She is sweet and familiar with my case sorta. Neither of us could figure out why my veins would not give blood. I know my body has trouble with blood flow but this was a first for me. Yes I have been stuck more then a dozen times in one sitting, but that usually isn’t completely my body’s fault. Those times have been linked to people who weren’t good at their job.

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My abdomen was throwing a fit. Lots of pain, nausea, and dizziness… typical spoonie day. In addition my anxiety decided to drop by for a visit. Though I didn’t feel excellent I am blessed that I was strong enough, just barely, to attend a ladies dinner at my church. Sometimes getting out of the house and being around people is lovely. It can be a distraction. Hopefully tomorrow will be a better day.

Weakness. Something every Spoonie goes to battle with. Silently, it attacks. Consuming every inch of your being.  Demolishing you; crushing you with horrendous pressure. Because of it you want to burrow as a rabiit does in a deep whole and sleep for a century. Some days, it is utterly unbearable. Despite all of this, you thrive daily. The average person will never endure the depth of your health combat. With grace and elegance you dance through your day. Continuing on is difficult, but you do so courageously. You do not take note of the strength you have. Strength through weakness. Strength through tears. Strength through every season of life. Anchor yourself in this stunning strength. The battle is brutal but you’ve got what it takes. Keep fighting. Crawl forward. It will be okay.

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