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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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. ❤

Holy Thursday

 

The washing of feet occurs multiple times in the Gospels, furthermore, in Biblical times, this was common. In this song, it is believed that Mary Magdalene is the woman washing Jesus’ feet. Some time later, it is witnessed in Scripture that Lazarus sister, Mary washes Jesus’ feet. Lastly, Scripture records the tender moment that Jesus compassionately washed His disciple’s feet.

There are plenty of overlapping details and each has details that make it unique from the other feet washings in Scripture. One of the disciples proclaims Lord if you only knew who was touching you as well as the horrifying sin in her life. He was more aware of the depth of her sin than she ever could be.

Sin is a focal point for each foot washing story. Holy Thursday, Jesus is with His disciples. Jesus was aware when He cleanses the disciples that He was about to take on the sins of the world unlocking the power of Salvation. Even so, He put on a garment of humility as His heart’s sorrow increased for all He was about to endure; not only physically but also emotionally and spiritually.

“Jesus, knowing that He had come from God and was going away to God,  stood up from dinner and removed His outer garments. He then wrapped Himself in a towel,  poured water in a basin, and began to wash the feet of the disciples, drying them with His towel.

Simon Peter (as Jesus approaches): Lord, are You going to wash my feet?

Jesus: Peter, you don’t realize what I am doing, but you will understand later.

Peter: You will not wash my feet, now or ever!

Jesus: If I don’t wash you, you will have nothing to do with Me.

Peter:  Then wash me but don’t stop with my feet. Cleanse my hands and head as well.

Jesus:  Listen, anyone who has bathed is clean all over except for the feet. But I tell you this, not all of you are clean.

Jesus is lowering Himself to servanthood as an example for His beloved children.”

John 13:3-10 The Voice Translation

Each person is in desperate need of the cross. In need of forgiveness, mercy, grace, God’s love, and salvation. Jesus lowered Himself not only to servanthood but to a horrible unexplainable death on the cross. Regardless of what anyone does, we will never fully comprehend this sacrifice on this side of Heaven. May we strive to understand it better consistently.

Numerous examples are displayed by Jesus for us in Scripture, however, none of them are natural or easy. To live in His footsteps requires us to surrender ourselves to Him, to be connecting with Him, and to have His Holy Spirit.

“Now tell me why do we gather together in His name, Are we like the ones who merely watched, Tell me is that why we came, Are we like this sister, Do we truly enter in, In spirit and in truth, Have you come to worship Him? With your hands, are you touching him, And with your heart are you loving Him, And with your hands are you holding on to His, Then the source of life was right there in your hands.” Touching Him by Ray Boltz.

 

Ponder these lyrics in your precious heart as you reflect on each aspect of the Holy Week story. Come to the Lord, in spirit and truth; laying every sin and burden at the foot of the cross. Be transparent with Him in prayer. He knows your every thought, sin, and desire but wants to hear from you and connect deeply with you. Allow The Souce of Life to renew your heart.

Jesus Christ,

I am constienly amazed when I read the Scriptures of Your precious life. Help me to continue to know You fully and to pursue You in my daily tasks. Open the eyes of my heart this Holy Week. Soften my heart. Give me a deeper understanding.

I am like the woman in the song a sinner from birth so unworthy of Your love. At times, my sinful nature takes over. I make dozens of excuses for my sins. I confess that I have not obeyed Your commands, I have not kept You first in my life, I have lacked compassion, I have been selfish, and much more. I cry out, Lord have mercy on me! Extend Your amazing grace. Lavish Your forgiveness onto me. Make me pure once more. Enable me to turn from my sinful nature.

The concept of Your completely free love can be hard to understand. My good works would never have been good enough, but You do not require them for my salvation. My countless mistakes are as far as the east is from the west in Your Sovereign eyes.

I surrender all I am to You. I do not want to merely watch I need to enter into Your Holy presence in spirit and truth. I desire to reach out, touch Your hand, and walk with You daily. I want to love You with all my heart. Move my heart in a new way as I reflect on the Easter story. Thank you, Lord Jesus, for all that You have done for me. I love you.

Amen

The Heart of Worship

Worship is essential to our spiritual well-being. We were created to love and worship God. However, God does not need  you to worship him. He desires to be in close fellowship with you. He craves, for you to understand his love for you. Worship renews us providing us with joy, strength, peace, and much more.

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This song is a classic. Without knowing it many times our unfocused hearts, shove God out of the way; even during worship. We idolize other things or become prideful.  Our sin coved hearts begin to harden as we take steps backwards, away from the throne. How many time have we speculated how those around us are worshipping. In our minds saying, “She is showing off, that is not real worship.” Also allowing our minds to paint a captivating daydream. Consumed with our schedule, we fidget entertaining anxious thoughts.  Or we are more focused on the talent of musical ability than on the Sovereigness of God.  Music is a magnificent way to worship, but it is not the heart of worship, not the main focus.  Ironically, I am using songs to get me point across. The lyrics demonstrate truth,

“I’m coming back to the heart of worship
And it’s all about you
It’s all about you, Jesus
I’m sorry Lord for the things I’ve made it”

“The heart of worship is our heart, delighting in Jesus and expressing praise to him for the true things the Scriptures teach us about who he is and what he has accomplished for us.” God does not want us to participate in a drama production; he simply wants us to come as we are to authentically worship him. He knows our hearts. He knows every flaw and failure; every negative thing in our character and in our life. Despite this, he commands us to come as we are, as he lovingly extends his grace to us.

The majestic name of, the Lord is worthy of all honor. He lovingly crafted every corner of creation with passion. His fingerprints are evident throughout nature. “God’s glory is everywhere from the smallest microscopic form of life to the vast Milky Way, from sunset and stars to the storms and seasons.” Before God crafted the universe he construed a purpose for your life. Our righteous Lord is the source of life. Allow your heart to align with his will and worship his name.

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It is good to passionate pursue things, striving to succeed as hard work pours out. However, none of these things should become a god in our life.  In the spoonie world chasing after the Spoonie dream is easy. The dream of a perfect treatment plan, pain-free living, healing, or aspects of a healthy person’s life such as a social life. “To treasure God more than pain-free living.”  Do you treasure God more than anything in your life?

I love the words to this song though it the Spirt has showed me a lot.

“We must not worship something that’s not even worth it
Clear the stage, make some space for the one who deserves it
Anything I put before my God is an idol
Anything I want with all my heart is an idol
Anything I can’t stop thinking of is an idol
Anything that I give all my love is an idol

And we can sing all we want to
We can sing all we want to
And still get it wrong
Worship is more than a song”

If we are not intentional about riding our hearts from idols we, fall into the trap of worshiping them without even noticing it. The enemy longs to disconnect us from our creator. Keeping us away from worship is included in his laundry list of ways to diminish our faith. He attempts to keep us too busy to spend time with God, “the primary purpose of Sabbath margins- of saying no when appropriate- is to diminish our devotion to all other suitors and crystallize our allegiance to God.” Spending a substantial amount of time with God on a regular basis is not only a command the Lord gave us, but it is also essential to life. Time in worship allows us to be renewed in a unique way. Enter boldly into the Lords presence’s and worship him fully.

You’re a Fighter who Inspires me

You are a fighter who inspires me. Daily you demonstrate to the world what a fighter looks like. You struggle as you begin your day. Through out your day you accomplish a lot and battle many things because of your illness. Your optimistic attitude is inspirational. You battle so much endlessly. No one knows the depths of your invisible fight. Much of it is internal. Though you are weary your smile holds stunning beauty and inspiration. The fight is never easy. Some days the temptation to surrender is appealing, but you keep pushing forward.

My heart overflows with thankfulness for your presence here on Chronically Hopeful. It is an honor to know that you are here. I am inspired by your fight against invisible illness; your story. I am proud of all that you have overcome. You are my inspiration. You inspire me to keep fighting.Thank you for just being you. Thank you for fighting this chronic illness battle. Thank you for never giving up.I hope you will take a moment today to ponder your invisible fight. Be proud of how far you have come. Celebrate all that you have over come.

done

Your illness might be invisible, but you are certainly not invisible. You matter. Your story matters.

fighter

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