Rebellious Worship

Rebellious worship, those words don’t seem to fit together. Except for, of course, in my case. I find it necessary as the Holy Spirit moves me to be rebellious in my worship.

You see, I have several chronic illnesses, one of which is Hyperadrenergic Postural Orthostatic Tachycardia Syndrome. Professionals are advising individuals with POTS to avoid singing. Generally speaking, I follow advice to a T. However, there are times in worship, I am rebellious. Personally, singing allows me to connect with God and worship Him in an extraordinary manner.

Worship is more than a song, therefore there are many alternative ways to worship God. No one style is better than another. Never the less, music holds a special place in worship. Perhaps this is because many admirable Christians worshiped this way; such as King David, Mary the Mother of Jesus, and Jesus.

I have been singing praises to God for as long as I can remember. Some of the times I had been most filled with Christ joy was during worshiping Him through singing. I have many lovely memories, which I cherish, singing praises to the Lord with friends as an adolescent.

It is a struggle for me today to sing most times. It is hard to get adequate air to reach certain notes or to get enough air when rests are scarce. At times, I have a dizzy spell. The focus though isn’t my physical limitations, but the righteousness of my Lord. The physical combat, for me, is no reason to stop singing praises to God. I believe He knows my heart and the struggle I endure. I also know without a doubt that my worship is pleasing to Him.

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Dysautonomia Awareness & Update

Happy Dysnamonia awareness month! If you are unfamiliar with Dysnamonia please check out my blog post Dysautonomia Awareness. There are at least 15 types of Dynamonia, with POTS being the most common.  A few others are Neurocardiogenic syncope, Multiple system atrophy, and Familial dysautonomia.

Postural Orthostatic Tachycardia Syndrome was not recognized until 1993. Beforehand, individuals with the illness were misdiagnosed many times with anxiety. It is thought that there are a group of individuals who outgrow POTS.

It can be challenging to stabilize an individual with dysautonomia. Without proper treatment, it significantly decreases an individuals quality of life. I received my POTS diagnosis three years ago. It has impacted my life in ways that I would have never guessed.

My POTS has been out of control from the start (it has been acting up majorly this month which is why this post is so late). We attempted a blood pressure medication, which I didn’t tolerate. Then we did a beta blocker. Next, we did IV fluids, which by the way has been the best treatment I have received. Then we went back to what I like to call live at your own risk till we come up with a new idea.

The typical go-to list of eating salt, compression stockings, drinking insane amounts of water, and pace yourself has not been enough for my body. Of course, I do my best with the non-medication list for POTS people. Yet, my blood pressure would bottom out a few times a day. The effects of this are anywhere from dizzy spells to chills to passing out to falling to tremors.

Needless to say live at your own risk hasn’t been going all that well. I find it dangerous for me and those around me find it scary. At this stage of my life, I don’t find passing out to be scary period. I am more frustrated with needing to slow down even more and the injuries that occur when I don’t have a warning.

I began seeing one of the few POTS specialists in my area about a month ago. A week ago I failed my second tilt table. I had been skeptical doing another tilt table on high doses of steroids but my body surprised me when I passed out ten minutes into the test. They took some blood work during the tilt table and once those results are in we will examine what options I have for a new medication.

In addition, he is thinking there could be a mast cell factor which is kinda extremely long to explain so that’ll be in another post. The doctor did mention, after my last fainting spell, that there could be an element of the heart slow

I find it amazing beyond words that all of my pets are able to figure out when I will have an episode. My cats will try to get me to sit down or get my walker. Abby, my service dog in training will alert me and then get my mom. I have spoken to several professionals and no one is certain how they pick up on it. But I am thankful. In general, with the four of them, I have had fewer falls. It is once in a blue moon that they miss it or I lay down and still pass out.

 

*Photos from the Dysnamonia foundation photo contest.

Winner Announced!

Thank you to everyone who participated in Chronically Hopeful’s first giveaway! It was a delight to read your insightful comments.  It is an honor to have you read one of my blog posts. Without further ado our winner is ordinarilyextraordinarymom. Please send me your e-mail hopefulspoonie@gmail.com. Thank you

 

Lord,

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

I ask that You would enter into each persons personal time with You. May each person feel Your loving and powerful Holy Spirit. Allow them to grow closer to you, strengthen their friendships with one another, and allow them to leave Your loving presence renewed.

Amen

Giveaway

Prayer should be as natural as breathing to the maturing Christian. The principle is so simple yet we complicate it and allow ourselves to become intimidated. Prayer is a stunning way to intimately connect with Christ. Nothing in the world can replace it.

There are plenty of excused not to pray yet none truly valid. We do not need more than a few seconds, an education is unnecessary, and you cannot do it wrong.

At times, we hit a roadblock in our prayer lives, which simply could be from maturing. You wouldn’t expect a toddler to live on only milk, similarly, as a maturing believer, you may need to find a way to go deeper. You might need to renew it.

I am passionate about prayer furthermore, teaching others about it. I believe it is something we never cease learning about. A few months ago it was mentioned several times that I should write another book. Someone soon added to the suggestion that it should be a prayer book. After praying I was certain that this was the direction God wanted me to go for my next book, “Honest Moments With God: Thirty Days of Prayers That Allow You to Grow Closer to God’s Heart.”

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Thirty days of beautiful and unique Scripture-based prayers. Each prayer is complimented with Scriptures that enable you to grow closer to Christ. Also includes five devotionals, a worship playlist, and fifteen Scriptures to inspire you to write your own prayers. I am confident that God will use this small book to do amazing things and to bring His name glory.

“My soul is dry and thirsts for You, True God, as a deer thirsts for water. Why am I so overwrought, Why am I so disturbed? Why can’t I just hope in God? Despite all my emotions, I will believe and praise the One who saves me, my God.” Psalm 42:1 & 11

God,

Increase our soul’s thirst for You, the Living God. You have seen the tears cried behind closed doors. The ones in the dead of night. You understand the heartbreak of shattered dreams. The depth of the effects of broken relationships.

People mock me and question my faith. Asking where You are in my time of need. They question Your goodness. Question how You could allow suffering. I will remain unshaken, firm in Your promises.

Help me in this holy time, at Your feet, to pour my soul out to You. Enable me to be transparent. I surrender every burden, fear, question, and emotion. Empty me of myself. Free me from all the clutter in my heart and mind. Consume me with Your Spirit.

Direct me in Your precious love. Renew my hope day by day. You are my mighty protector. I rejoice in Your sovereign name. I have witnesses Your goodness all the days of my life. I extol Your Majestic name.

Amen

I thought that it would be fun to do a giveaway! The winner will receive a PDF copy of my book “Honest Moments With God: Thirty Days of Prayers That Allow You to Grow Closer to God’s Heart.”

Entering is super easy. Pick a question/prompt from the list below and respond in the comments. Don’t forget to share with your friends, the more the merrier. The winner will  be announced September 28th, 2017.

 

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Renewal Road

 Beginning yet another online Bible study I am able to identify with the author who happens to be a precious friend, furthermore, I am confident that you can relate as well. On the first page of the Renewal Road The Journey of Becoming More Like Jesus, Jill waste no time, jumping in with an important message. Dying so that Christ may live. She shares an important flashback of an encounter of depression, which is where I want to park to explore for a bit.

I know this is not the most comfortable topic. However, it is important to share our times of depression, sorrow, doubt, and hopelessness with one another. Many times, as Christians, we attempt to have it all together, to appear happy at all times might I dare say perfect. We want to appear in a way that we were never meant to be. Christ calls us to live for Him not to live in perfection.

With that said many people in the Bible encountered depression seasons consumed with sorrow and hopelessness. The world can feel like a dark and hopeless place. It is a fallen and painful world. We encounter countless mistakes or painful events every week. It might take the form of final burdens, a shattered relationship, or a malfunctioning body. Due to our sins, the sins of others, and simply because we live on earth we are bound to encounter at least one season of depression. 

Questioning as many amazing people before us what is the meaning of life? At times, it all seems so utterly worthless. For countless reasons, we mutter that we are worthless, unworthy of love, unworthy of life. It seems to sneak up when we least expect it during a time we would expect to encounter joy.

I have battled some depression in a few seasons of life though I am well aware those bouts of depression could have been more severe. I can recall many times the feeling of hopelessness. The heavy sorrow that seems to compress the soul till spiritually I couldn’t breathe. 

My most recent battle began to unfold after some gossip and lack of compassion at my Church. I felt like I needed just that one thing to be okay. To provide me with stability. As much as I love my Church family they are not my anchor they are a community who should provide support. Christ alone is my anchor, my hiding place, stability, and hope. 

Transitioning from I want to die to I want to die so that You may live is a challenging journey which requires persistence.  The transition demands continual prayer, pursuing the heart of Christ, searching the Word, and reaching out to others. 

This transition is astonishing, furthermore, it is beyond comprehension. The drastic shift in perspective enabled by Christ changes our world.  We are not immune from depression or hardship. When we walk through the valley, we are more equipt to battle the depression. Surrendering all to Christ changes every moment of every day for the rest of our life. 

Jehovah Rohi (The Lord is my Shepherd), 

You are my anchor which never wavers, furthermore, my unending hope. Regardless of what occurs in my life, You remain the same. Lord Jesus, from the depths of my soul I praise Your might name. Holy, precious, and mighty is Your name now and forever.

I thank You for the lessons I have learned from the seasons of depression in my life. I ask that You would use those painful times to bring honor and glory to Your name. Enable me to pour out my heart to You. Let me be transparent in my quiet time with my emotions. Help me to praise Your name even when my soul is overwhelmed with sorrow. 

Amen 

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 “If you want to follow Me, you must deny yourself the things you think you want. You must pick up your cross and follow Me. The person who wants to save his life must lose it, and she who loses her life for Me will find it.” Matthew 16:24-25

A Morning Prayer

“Put the word into action. If you think hearing is what matters most, you are going to find you have been deceived.” James 1:22

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El Elyon (The Most High God),

I praise Your name for a magnificent sunrise. Help me today to do my to do list in a manner that is pleasing to You. Let my words be infused with gentle, compassion, and grace.  Please allow my words to build others up and encourage others to grow closer to You. I ask for self-control to resist temptation and to battle my flesh. Establish the work of my hands.

I cherish Your living and holy Word. It is more valuable than money or earthly pleasures. Sweeter than the finest cuisine. Help me walk in the way you commanded. I desire to be obedient. Please give me a deeper understanding of Your word. Let me desire Your Word more day by day.

I desire to cultivate a constant heart of thanksgiving and praise. Fill me with the Holy Spirit. Direct my steps allowing me to make the most of each moment. By your mighty grace allow all I do to bring honor and glory to You.

Amen

When A Warrior Passes

Honestly, I have wanted to write this post for a good two months, but it has been difficult to write.

You know once you have transported to the world of chronic illness that one day you will be devasted when someone passes away. However, you are never ready enough for that moment.

I had expected to eventually lose someone in a Facebook support group not someone I went to school with. Two weeks before she passed I ran into her mom while food shopping. I barely remember anyone from high school and it is embarrassing as well as frustrating for me. But when her mom said her name I could picture her sitting next to me in middle school. I had assumed she moved not that she was chronically ill with at least one of my illnesses. I promised her mom I would talk with her and we could hang out. Her mom said they were attempting to get her paired with a service dog. I was so excited at the possibility of having an in person chronically ill friend my age.

I didn’t hesitate finding her on Facebook.I tried to be patient waiting for her to response constantly reminding myself she was flaring. Within hours I found out I was too late and it broke my heart in a new devasting way. I immediately regretted not connecting with her sooner. I know she suffered way too long and things were horribly unfair. She should be going to college and building a life for herself.

Lossing someone who has one of your illnesses or who is chronically ill is extremely different. I have balled my eyes out many of times for a life of a fellow warrior that I barely knew. My heart goes out to the families in a unique way.  I might not have known them well or maybe not at all yet I live a small part of their story. I live the pain, doctors, symptoms… the life of a spoonie.

The grieving seems to be unique to those with chronic illness. There is an element of guilt for living because you know it could have been you. You wonder why it was that person, what if someone listened better, could it have been avoided, or will that be me one day. Frustration with the health care system at times.  Angry with the people who brush us off.

It has been a few months but from time to time she’ll come to my mind. I wish I remembered more about her other than her pretty hair and sweet voice, like an actual conversation. This death has been completely unique in the way it affected me.

Anytime someone passes with a chronic illness around your age it hits home and it is difficult. When you lose someone to chronic illness allow yourself time to grieve. If someone in the chronic illness community you know passes find a special way to say good bye and to pay your respects. When a girl passed with IBD a few weeks back, I found great comfort in leaving her family a message on an online guest book in honor of her.

Regardless of how close you were let yourself cry if you need to.  Give yourself permission to get angry, to feel hopeless, or broken. Emotions are healthy. They are indicators of things going wrong and of heartbreak. However, emotions are not your dictator so once you have allowed yourself to feel you need to slowly move forward. Allow yourself to heal slowly. Seek support from others who are chronically ill, family, and friends. Cherish each moment in life and live them to the fullest as best you can.

 

 

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. ❤

To The Girl With The Bruises

Girls receive the message that they need to be flawless physically which is impossible. They are ashamed too often of bruises, rashes, stride marks, or other physical changes due to things outside of their control. No one should feel ashamed of their body because of their invisible fight. They hide the imperfections at all cost.

To the girl with the bruises from falling too often because your body cannot remain up right, your bruises are beautiful.

To the girl with the bruises from unknown causes, your bruises are beautiful.

To the girl with the bruises from bumping into things because of balance issues your bruises are beautiful.

To the girl with the bruises from a blood disorder, your bruises are beautiful.

To the girl with the bruises from abuse, your bruises are beautiful.

To the girl with the bruises battling her own body and daily fighting for her life, your bruises are beautiful.

Your bruises are a part of you for a few days, weeks, or maybe a season of life. They do not define you or tint your beauty. There is no reason for you to feel ashamed. Your bruises are beautiful because they represent your invisible fight against your body.

They are beautiful because they are proof that you never give up. You have courage, strength, and dedication pushing through the most difficult times. You might need a break or time for a melt down which is okay but you continue moving forward.

Your identity is not rooted in your looks. Your value more than skin deep. Your heart is stunning. You have courage that many people only fantasize about. You are an inspiration and a blessing beyond words. Sweet friend, your bruises are beautiful.

Psalm 5

Today, we are going to take a more in-depth look at Psalm chapter five, furthermore, this post will build off the introduction to Psalm chapter five.There is an overwhelming amount of awe-inspiring beauty in Psalms. Cries to God of pure relatable emotion.

Bend Your ear to me and listen to my words, O Eternal One;
    hear the deep cry of my heart.
Listen to my call for help,
    my King, my True God;
    to You alone I pray.
In the morning, O Eternal One, listen for my voice;
    in the day’s first light, I will offer my prayer to You and watch expectantly for Your answer.

You’re not a God who smiles at sin;
    You cannot abide with evil.
The proud wither in Your presence;
    You hate all who pervert and destroy what is good.
You destroy those with lying lips;
    the Eternal detests those who murder and deceive.

Yet I, by Your loving grace,
    am welcomed into Your house;
I will turn my face toward Your holy place
    and fall on my knees in reverence before You.
O Eternal One, lead me in the path of Your righteousness
    amidst those who wish me harm;
    make Your way clear to me.

Their words cannot be trusted;
    they are destructive to their cores.
What comes out of their mouths is as foul as a rotting corpse;
    their words stink of flattery.
10 Find them guilty, O True God;
    let their own devices bring them ruin.
Throw them out, and let them drown in the deluge of their sin,
    for in revolt they brazenly spit in Your face.

11 But let those who run to You for safety be glad they did;
    let them break out in joyful song.
May You keep them safe—
    their love for You resounding in their hearts.
12 You, O Eternal, are the One who lays all good things in the laps of the right-hearted.
    Your blessings surround them like a shield.

The more I read this Psalm the more I fall in love with it. Prayer is not always expressed in words, but it is also “unuttered longings which abide as silent meditations. Words are not the essence but the garments of prayer.” (Biblestudytools.org) Meditation is defined as prayer accompanied with deep thoughts and fervent affections of the soul by Wesley’s Commentary.

Pouring out my heart to the Father felt natural as a young child. However, I became frustrated with pouring out my heart to God because I thought it sounded too negative. I stuck to praising Him, thanking Him, confessing sins, and praying for others. It didn’t take long for me to be convicted, as the door swung open for me to pour out my heart once more. The issue with my thinking was me. I labeled myself as a burden even to God, but that is not how God viewed me.

 

While those other things are essential being honest with God is vital. If we can’t be honest with Him than really who can we be honest with? We don’t need to pretend to be perfect or to try to look pretty for God. It is reassuring that God encourages us to ache freely. He knows the deepest cry of our heart yet He desires beyond words for us to share it with Him.

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This Psalm reminds us of the importance of beginning the day with Christ. Not only offering a prayer but to be expectant for an answer and expectant to see God at work throughout the day.

Verses four – six highlights our sinfulness. At times, it can seem like a contest who has the best redemption story or who is better at resisting sin. When we are honest we are all the same, all drenched in sin and only saved by God’s amazing grace.

Mercy is the foundation of verse seven. It is a privilege that we are able to enter into the Lords presence. Even though things were messy for David here we see him faithfully praising God.

We all encounter times of spiritual warfare.  It is vital during these times to draw close to God taking refuge in Him. Furthermore, trusting that He will direct each step according to His will. We have confidence that He is the righteous judge. He is our great defender. Lastly, God will provide all we need to thrive in spiritual warfare and every trial.

In closing, I would like to share this study guide on Psalm 5 with you. I hope it will encourage you to dig deeper into this chapter. I know the Lord is at work in Your life.

El Roi (The God Who Sees me),

I praise You for Your loving grace. From the depth of my heart, I worship You. The whole earth declares Your glory and rejoices at the sound of Your name.

You are my shepherd guiding my every step. You understand every thought. Thank you for allowing me to ache freely. I praise You that I can be transparent with You. I rejoice in You for always hearing my cry.

I delight to do Your will and to walk with You daily. Increase my desire for You. Thank you that each battle is dependent on you alone. You are my hiding place. I surrender all to You opening my heart to receive Your word.

Amen