Mitochondrial Disease

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Float by Melanie R.

Float by Melanie R.

Punctured balloon.

Slowly dies.

Floats.

Aimless.

Half-filled.

Exiled.

Rubber thinned.

Knotted end.

Static- hair life.

Stretched.

Detached.

Deflated.

Breath of God.

Flowed.

Infused.

Contained within.

Reacted.

Patched Holes.

Renewed purpose.

Refilled life.

Carried on-high.

Rippled rejuvenation.

Exodus.

Faith message.

Proclaimed.

Rings on-high.

Reaches Heavens.

Rejoice!

Thank you Jesus for allowing this journey of floating on grace through rare chronic illness/chronic pain and all of its complexities. Let us all continue to float on in Your mighty strength and purpose!

Isaiah 40:9
You who bring good news to Zion, go up on a high mountain. You who bring good news to Jerusalem, lift up your voice with a shout, lift it up, do not be afraid; say to the towns of Judah, 'Here is your God!

Psalm 68:11
The Lord gave the word; great was the company of those who proclaimed it.

Luke 19:37-38
And when he was come nigh, even now at the descent of the mount of Olives, the whole multitude of the disciples began to rejoice and praise God with a loud voice for all the mighty works that they had seen; Saying, Blessed be the King that cometh in the name of the Lord: peace in heaven, and glory in the highest.

Acts 1:8
But you will receive power when the Holy Spirit comes on you; and you will be my witnesses in Jerusalem, and in all Judea and Samaria, and to the ends of the earth.

#RareDisease #MitochondrialDisease #SjogrensSyndrome #ChronicIllness
#ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain #IrritableBowelSyndromeIBS #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #Endometriosis #HypothyroidismUnderactiveThyroidDisease

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Blind Faith by Melanie R.

Blind Faith by Melanie R.

Like a moth to a flaming light, let us draw close to the,“Everlasting Light”, (Isaiah 60:19-20)

Faith is the blind trusting in God, and His promises to endure in all of our difficult circumstances.

As followers of the light, we can find awe and wonder in the North American Io silkworm. The io moth lifecycle inspires, and has parallels to our spiritual rebirth, because they are also formed as eggs, hatched in growth, and are cocooned/preserved to emerge in rebirth by true renewal of faith!

Trusting God’s lighted guidance and spiritual senses through the darkness; to see beyond what’s physically visible kindling our own illuminated insight.

We are asked to walk by faith and not by sight (2 Corinthians 5:7), and the blind io moth relies on the moonlight to guide them on their nocturnal quest.
Although their blindness is a limitation, their attracting yellow vibrancy, and keen sense of smell can be viewed as a guiding wisdom in their luggage/arsonal to carry, and less of a baggage/burden of flight.

A weightless freedom led to a destination of endless hope and safety….a transcending peace, love, and comforting security.

As in the beginning, in the dirt of darkness,…even as pain lurks in the shadows, a flickering distant lantern light calls for transformation!

Psalm 119:105
Your word is a lamp to my feet, and a light to my path.

A spiritual metamorphosis and rebirth in Christ.

The male io silk worm spreads it wings to reveal it’s “ocelli” or eyes, which are kept hidden and surprisingly then it’s fragile fanned wings open to reveal its beauty! As it has experienced permanent restored change and will never be the same.
As we also open our hidden spirit eyes Christ is revealed to us through this uncovering which ultimately sets us free to take flight; soaring above on the wings of full trust.

Proverbs 16:20
Whoever gives thought to the word will discover good, and blessed is he who trusts in The Lord.

1 Peter 1:8-9
Though you have not seen Him, you love Him. Though you do not see Him now, you believe in Him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.

God be with you all on this journey of discovery and unveiling! Open your spirit eyes and be open to receive a transformative experience through the light of Christ! I pray you all take flight and fulfill your true purpose in pain/disability.
Through faith, we are partaking in the redemptive power of a profound rebirth in purpose to fulfill God‘s plan in destiny.
No longer defined by rare disease, pain, and frustration; but as an heir and testament to God’s promise of faithfulness to those that suffer.
Sackcloth to garments of righteousness under our armour for the Lord’s splendor. Clothed in grace and mercy, and the healing anointed favor of the spoken Word. This faith protects and prepares us to take flight!

#ChronicIllness #ChronicInflammatoryDemyelinatingPolyneuropathy #MitochondrialDisease #ChronicPain #RareDisease #IrritableBowelSyndromeIBS #Dysautonomia #SjogrensSyndrome #InsideTheMighty #RheumatoidArthritis #MightyPoets #MightyPoets

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Reactions by Melanie R.

Reactions, Reactions.
Pulsed like contractions.
Not just the pain,
I’ve been through it;
in my body now all of these years.

Just then it hit me.
Wild fire and crippling.
Felt the burn as I waited,
and prayed in the dark suffering.
As My savior led the way,
because reactions were made.

Can’t hold it back now; not the same.
Don’t feel right being this way.
Passed through old familiar strains.
Flooded fields, fluttered gates.
Did my body betray?,
While reactions were made?

Should’ve known it was coming,
Pointed straight to my trusting.
Would’ve loved this to heal me,
and soul-fire fill me;
but reactions-
were no over-reaction.

As it raced through my veins;
He saved me from hurt,
and the poisoning flame.
Rescued out of that day-
because reactions were made.

There He shared in the low,
Shook it off-
He’s in control.
All my asking He Knows-
My reaction through pain.

Started from a reaction,
New life put me in action-
I am healed through His Name!

#MitochondrialDisease #ChronicInflammatoryDemyelinatingPolyneuropathy #RareDisease #IrritableBowelSyndromeIBS #ChronicPain #ChronicIllness #InsideTheMighty #RheumatoidArthritis #MightyPoets #RheumatoidArthritis #HypothyroidismUnderactiveThyroidDisease

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Pain Girl by Melanie R.

Pain Girl by Melanie R.

The chronically ill that experience continuous pain in multiple areas everyday, myself included, dread the doctor office doodle I have dubbed “Pain Girl!” She’s infamously found in every pain clinic/doctor office and is said to have the ability to accurately depict the agony the chronic illness sufferer experiences with pencil smudges and a 1-10 score! Of course pain can only go to 10… said no rare chronic illness sufferer ever!
We are usually asked to circle the painful areas on a blurry drawing; labeling S for stabbing, B for burning, etc.
Such little information could be drawn for what I was experiencing with rare chronic illness. I usually had a Picasso painting to present most times! (Some say scribbles of frustration,…I say Picasso!) I don’t think I could even see Pain Girl under my swirling circles and slashes of pain. Making your doctor and yourself laugh while struggling in pain is always a plus.

So in the honor of Christ, the healing of the Body that Christ brings, and infamous pain girl, make a Picasso of your pain and healing.
Draw, paint, doodle, or get crafty making a picture of your pain girl/boy. Color the areas where you experience pain, swelling, stiffness, etc., then draw a cross, put a sticker, a heart, (whatever you want) as your symbol that:

-God is aware
-Hears your cries for relief
-you will be fully restored and healed.
-It won’t be long, etc.
Think of your own too.
Make it fun.
Please share/Post

Today could be the last day of suffering. Today could be the day of His return. Living in the body of Christ it proves that even though we are sick in body, we can heal, and be healed already. Suffer well! Healing will come!

Beloved, I wish above all things that thou mayest prosper and be in health, even as thy soul prospereth.

3 John 1:2

I will restore health unto thee, and I will heal thee of thy wounds, saith the Lord.

Jeremiah 30:17

#MitochondrialDisease #ChronicIllness #BackPain #ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain #Jesus #suffering #InsideTheMighty #IrritableBowelSyndromeIBS #RareDisease #Hyperthyroidism #RheumatoidArthritis

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Infused by Melanie R.

I plead as I receive.
The blood was shed for me.
I placed it on the cross,
now blessings for the loss.

My spirit, soul, and body-
all healed…
Infused His name.
He carried it all on willfully
my suffering-
for my gain.

An act of faith found worthy.
My savior,…blood was shed.
I take into my body,
the wine filled medicine.

She reached out with one touch.
A faith found strong and true.
For answers in the darkest night,
endurance shining through.

An answered prayer for healing,
soft on the wings of doves.
A witness to her suffering-
sent lifelines from above!

Malachi 4:2
But to you who fear my name, The Sun of Righteousness will rise with healing in its wings…And you will go free leaping with joy…

God is faithful! Rise & stay strong Mighty health warriors! Healing will come!
You’re already free!
IVIG immunotherapy was approved and I received my first dose today!
Praise God for this healing and answered prayer! Thank you Jesus!

#MitochondrialDisease #RareDisease #ChronicIllness #ChronicPain #InsideTheMighty #RheumatoidArthritis #SjogrensSyndrome #HypothyroidismUnderactiveThyroidDisease #IrritableBowelSyndromeIBS #POTS #PosturalOrthostaticTachycardiaSyndrome #ChronicInflammatoryDemyelinatingPolyneuropathy #RareDisease #ChronicIllness

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Monitored by Melanie R.

Echoed chambers of my heart;
Centered rhythm deepest part.
Search me Lord, and see I’m true-
Slated clean,
each beat for you.

Five ways count each beats refrain, monitored life both joy and pain.
Set each P,Q,R,S,T…
my heart declares my love for thee.

And if one day my chambers still,
my heart set free-
fulfilled Your Will!

Psalm 26:2
Test me Lord, and try me,
examine my heart and mind.

1 Chronicles 28:9
Acknowledge The Lord of your father, and serve him with wholehearted devotion, and a willing mind. For the Lord searches every heart, and understands every desire, and every thought.

#MitochondrialDisease #MightyMoment #ChronicIllness #ChronicPain #InsideTheMighty #ComplexRegionalPainSyndrome #AxonalNeuronalNeuropathies #PosturalOrthostaticTachycardiaSyndrome #RareDisease

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Puzzled by Melanie R.

You held on-

to life’s puzzle pieces

when you didn’t know where to start.

One piece at a time,

could finally see-

through pain and the tears in your heart.

Each piece of His wonder,

the pieces of you-

Great Love in the darkest of skies.

No, you didn’t stumble,

brought healing from Father

when puzzled in pieces of life.

You rounded the corners,

when jagged and cornered;

they started to fit perfectly.

Each piece in it’s place,

God’s guidance and grace

with beauty of Psalm 17.

🧩❤️‍🩹✨💪🏻🙏🧬
#MitochondrialDisease #ChronicIllness #Gastroparesis #IrritableBowelSyndromeIBS #HypothyroidismUnderactiveThyroidDisease #HashimotosThyroiditis #RheumatoidArthritis #RareDisease #IdiopathicIntracranialHypertension #ChronicPain #ComplexRegionalPainSyndrome

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Loony Tunes of Suffering by Melanie R.

Loony Tunes of Suffering

Warner Bros. created years of laughter through their characters on a seemingly unattainable chase. I just never would’ve expected these childhood cartoons would’ve given a foreboding, and biblical representation on what was to come later in life; as chronic pain/rare chronic illness, and my spiritual growth were broadcasted on the television of my adult life.

As children, as soon as we heard the symphonic xylophone intro of Merrie Melodies, our heads bobbed along, and we stared wide eyed at the zoomed in faces featuring Bugs Bunny, Daffy Duck, and Yosemite Sam.

The music was our cue to gather round on the living room floor, and get ready to watch the show! Thinking back, more than just running in circles, maybe these characters had a story to tell other than their famous taglines.
Were they all actually trying to tell a vision?

Eh- what’s up doc?

Like Bugs Bunny, inquisitively I have asked this question to the many physicians I have seen over the years after my full immersion into this Technicolor world of chronic illness and invisible disability. Like me, I am not sure if Bugs received a satisfying answer to that question either.

“Suffering succotash!” Mel Blanc served up suffering succotash to Sylvester‘s famous catchphrase to Tweety Bird.
Although Sylvester never actually caught Tweety, he never gave up on his pursuit.
An example to continue on in advocating and persevering all these years later through the lunacy of medical complexities.
I was certain Sylvester was attempting to free Tweety from his cage so that they could play together.
Suffering succotash has numerous dictionary translations, and surprisingly, one meaning suffering savior. This bringing to mind how I would humbly and diligently call upon the Savior Jesus to free me from the cage of suffering.
Daffy duck was also known to call out for suffering succotash when he was perplexed with life.
Arriba translated as encouragement.
While running from his adversary, Speedy Gonzales called out, “Arriba Arriba. Andale, andale!”, as a cloud of dust covered ensnarements.
It was another telling sign to be quick to call for encouragement!

One of the most memorable characters was the red bearded, gunslinger Yosemite Sam, and how he loved to harass Bugs Bunny. What was Bugs’ his reaction to Yosemite Sam’s temper tantrums?
He had no fear, and he stood tall while continue to munch on his carrot!
Yosemite Sam could have had a unwritten Christian background, because he told Bugs Bunny to say his prayers!
So many prayers are needed to endure long-suffering, and Yosemite Sam had sound advice.
Rare chronic illness/chronic pain can feel as heavy as the grand piano falling from the sky out of nowhere every day. Sometimes in suffering, it seems the only downy soft commercial break is the time spent in connection to God.
As we spend our time in prayer, the word of God comforts us just like the fluffy towels the downy bear bounced on.
Back then I didn’t know the role these catchphrase subliminal messages would have had on my adult life and suffering, but looking back, they were in some ways pixelating God’s love on a Saturday morning rerun of Looney Tunes.

#MitochondrialDisease #SjogrensSyndrome #RareDisease #Disability #HypothyroidismUnderactiveThyroidDisease #PosturalOrthostaticTachycardiaSyndrome #InflammatoryBowelDiseaseIBD #ChronicIllness #ChronicPain

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Whoa I’m On Fire!

Springfield was on fire.

Johnny had a ring,

Billie didn’t start it,

Taylor-

Fire and Rain.

7 times the furnace,

three boys trust His name.

They held on in the burning …

walked out from that flame.

🔥🙏💪🏻🕊️🛟✨
Keep trusting in your fire!

#MitochondrialDisease #sjogrens #IrritableBowelSyndromeIBS #ChronicPain #RareDisease #PeripheralNeuropathy #ComplexPosttraumaticStressDisorder #PosturalOrthostaticTachycardiaSyndrome

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That I Burn by Melanie R.

Lifetime with pain
Pin-pricked in pieces
battled set burning,
it’s raging increases.

It’s chronic,
it’s rare.
Flared Inflammation.
Body that failed…
Complete consummation-

It hindered my soul,
Downtrodden and low.
Withstanding the suffering,
It’s tussling wide loads.

Desperate cold nights
Him calling my name,
preserved me on weary
ignited the flame.

Jesus drew close,
For Him I am sure.
Through all of life sufferings
set me to endure.

The poking, the prodding,
the pain with no cure,
for Him in my body and soul-
I’m made pure.

Heavenly Father,
As you searched and centered my innermost core; my faith ignited your reflection.

Spoken into life to forever burn your kingdom light that kindles throughout my heart.

Resounding faith formed like these words…seen by the ones called, preserved, and understood-
His wisdom given in the Holy flame for present and future time.

That I burn-

When monitored you equipped me in palpable hope through Your sovereignty.

Let it resound its course of your reign!

Carry me through the locked chambers of suffering; for the harder the suffering, the higher your plan.
I yield my body and surrender for I know it is all for Your glory.

Father,
Your eternal word created the fire’s dance when shadows appeared consuming.
You poured your Holy anointing on my answered prayers to keep me burning through the endless nights of chronic pain.

That I burn-

Resuscitated from the smoke and suffocation when darkness lurked to extinguish me.
You received me on Holy ground like Moses and the burning bush.
I thank you for the immeasurable strength to walk upright in this purpose.

That I burn-
My light persevered!

Glory to God!

Sampled, probed, poked, and tested true!

Your name is magnified as my spirit burns in rhythm set to your timing.

In these recent few weeks I am recovering from my 2nd hip surgery (10 weeks post-op),
I have received 2 additional diagnoses.
I’ve had both Leg EMGs, left leg biopsies.
I also had an echocardiogram, heart monitor, pain pump maintenance, bloodwork, etc…

I have relentless burning in physical pain, but also my spirit is burning for the true message of our Lord and savior Jesus Christ!

That I burn-
and to God be the Glory!

Stay strong Mighty Warriors and burn on!
I pray for your strength to endure!

#MitochondrialDisease #sjogrens #PosturalOrthostaticTachycardiaSyndrome
#IrritableBowelSyndromeIBS #HypothyroidismUnderactiveThyroidDisease #HashimotosThyroiditis #ComplexRegionalPainSyndrome #RareDisease #PeripheralNeuropathy #Pain pump patient

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