Mitochondrial Disease

Create a new post for topic
Join the Conversation on
Mitochondrial Disease
4.5K people
0 stories
406 posts
About Mitochondrial Disease Show topic details
Explore Our Newsletters
What's New in Mitochondrial Disease
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

Peaked by Melanie R.

Peaked by Melanie R.

I looked to the hills where great mountains stand.
For all of my help is from God’s righteous hand.
They reach to the heavens as they do declare,
the signs of His wonder,
His glory, and care.

The height of His Majest-
My Rock,
cornerstone.
Atop there with Him,
I’m sheltered…
I’m home.

The Rock that was thrown down;
rejected,
then rolled…
now holds me together,
shows mysteries unknown.

Mt. Tabor’s prominence,
Mt. Carmel stood tall,
proving there’s One God
that reigns over all.

In His holy mountain,
with Him by my side,
in hearing His word
growing faith-
I abide.

The gush of the water that came from the stone,
Rained living water;
restoring me whole.

Psalm 121:1-2
I lift my eyes to the hills. From where does my help comes from? My help comes from The Lord who made heaven and earth.

1 Corinthians 10:4
All drank the same spiritual drink. For they drank from the spiritual rock that followed them, and the rock was Christ.

Isaiah 41:10
…I will strengthen you and help you; I will uphold you with my righteous right hand.

Stay strong Mighty Warriors!
God bless and be with you all on your health journey!

If you enjoy my poems and inspiration please be sure to check out my YouTube channel:
Melanie’s Melody for more of God’s message in suffering.

#ChronicIllness #RareDisease #MitochondrialDisease #ChronicInflammatoryDemyelinatingPolyneuropathy #PosturalOrthostaticTachycardiaSyndrome #ChronicPain #RheumatoidArthritis #HypothyroidismUnderactiveThyroidDisease #InsideTheMighty #MightyPoets #MightyTogether #CheckInWithMe

Most common user reactions 12 reactions 5 comments
Post
See full photo

Bells by Melanie R #ChronicIllness #ChronicPain #MitochondrialDisease #ChronicInflammatoryDemyelinatingPolyneuropathy #MightyPoets #InsideTheMighty

Bells by Melanie R.

Bells vibrate in their tolling;
the toll upon its frame.
Spirit sings,
the tone not muffled
by harsh suffering.

It swung to hit,
and deaden sound;
to take away its song.
Clapper’s ding-
piercing pitch,
would strike the headstock strong.

Though hung up in a belfry,
and yanked on by a rope.
The one that had no slack to give,
the one that had no hope.

The pulling down,
forced side to side…
Jolted,
worn down bell.

It didn’t crack,
stayed in rhythm-
swayed til it was still.

The bell’s yoke
heavy laden,
reverberate on rounds.
Called out to my savior,
He heard,
my spirit found!
Prepared 10,000 angels,
Golden bells of faithful noise,
the blowing of the shofar,
a shout of grateful poise.

Lord’s musical procession;
Instruments in hand.
Conducts His Holy orchestra…
Bell’s song will ring again.

(edited)
Most common user reactions 6 reactions 7 comments
Post
See full photo

Words by Melanie R.

Words by Melanie R.

Ink to paper-
Pen to hand;
to carry your message
from wisdom within.

Holy transcription;
scroll raveled in soul.
Aligned with anointing
true wholeness in goal.

Circling.
Fine dotting.
In motion each curve.
Pressing the fountain,
exalted in word.

Sealed with your signet
ascribed for divine.
Preserved in the message,
a seeking-
to find.

True meaning in purpose,
His loving embrace.
With each line completed,
With each word that’s placed.

A journey of knowing,
A song sung in parts.
Transcends human senses
with spirit and heart.

Intwined in the melody,
Composer and song.
Dancing in rhythm-
A harmonic sound.

Pirouette through His timing,
careen under grace.
Knowledge unfolding
of God’s masterpiece.

Audible writing
The ink set to page.
Called forth for this mission,
bright spotlight on stage.

Crossed over the T’s-
Rounded the Oh’s…
Took on the suffering
with message of hope.

(These stories, and many more on my YouTube channel: Melanie’s Melody!)

God be with you all!

#RareDisease #MitochondrialDisease #ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #HypothyroidismUnderactiveThyroidDisease #ChronicIllness

(edited)
Most common user reactions 9 reactions 5 comments
Post
See full photo

Super Seed by Melanie R.

Super Seed by Melanie R.

Past dunes,
bazaars of market spice
the planter fared for gift of life.
Past storms,
crossed marsh,
contended seas.
The search consumed to supersede.

The planter’s hope on path’s unknown.
Walked thorn in side o’er fiery coals.
A strength of Will,
a test of faith,
So worth the trek,
no time to waste.

So deep within the earth’s crevasse
Super seed was rare to find-
The planter brave to travel there.
lamp by feet to guide.

The quest consumed
as passion flared
Find super seed,
then plant with care.

Hidden by faith,
Blinded by source.
The planter prevailed;
sailed on to the course.

Traversed below the surface,
a suffocating search
Many were called before him,
and some have not returned.

Time went by as darkness pressed,
and time to sow was ticking;
the seed then found amidst the dead
a covenant seed of picking.

Planter knelt on all the darkness
and placed his hands in dirt,
Brought them both together
prayed through all the hurt.

Tilled soil with only finger
Aerated when in heart,
The neck of fate,
with open hand
Let go of all the hurt.

So on your quest,
remember this,
A remnant lost in fear.
Now plant your seed,
you’re alive again;
watered by the tears.

To this day you’ll find it,
full grown to supersede.
Flourishes beside hope’s gate,
the seed became a tree!

#MitochondrialDisease #PrimaryImmunodeficiency #IrritableBowelSyndromeIBS #RheumatoidArthritis #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #RareDisease #ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain

(edited)
Most common user reactions 1 reaction
Post

Sound like mito?

#MitochondrialDisease #Undiagnosed #RareDisease

Hello everyone. I have been seeking for answers my whole life and just learned about mito and sounds very possible. Here are my symptoms:

-significant fatigue that often has my body feeling extremely heavy. Sometimes to the point of not being able to move/will have trouble breathing. Rest helps a bit.

-muscle pain, spasms, twitching, and tightness.

-muscle fatigue/weakness(?)

-poor growth (due mainly to growth hormone defeciency) and a lot of trouble eating & gaining weight. Dx of gastroparesis and IBS as well.

-had an EMG done as a teen that was abnormal but inconclusive as the tech couldn't interpret the signals.

-Visual blindspots

-Orthostatic intolerance

-Probably more to add but cant think of them. I recently had to invest in forearm crutches and while I try to avoid them, do use them on worse days.

(edited)
Post
See full photo

Pass it on by Melanie R.

Pass it on by Melanie R.

Pass it on;
passing the time…
The past is behind,
and time has passed on.
From passages,
past ages,…
all has come to pass.

Not to pass life away,
or have life pass passing the time;
preventing the passing,…
but past to pass.

For Life and time has proven it wasn’t meant to stay, but had to pass on sacrificially for new life to begin.
Pass the test of past, present, and future.
Let go and allow God to pass you through.
The past, has passed, and it was time to let go.
Pass it on.

Get passed it, to pass;
and while doing so,
pass on the passages of wisdom, knowledge, and understanding of truth passed onto you.
Pass it out,…Pass it on.
The cross as the compass in our hearts guiding the way on the map to the righteous road.
A passionate paragon, piously passed,
past depths of spiritual resonance;
a passing of death to life…
Pass it on.

Phillipians 3:13-14
Brothers and sisters, I do not consider myself yet to have taken hold of it; But one thing I do: Forgetting what is behind, and straining toward what is ahead, I press on toward the goal to win the prize for which God has call me heavenward in Christ Jesus.

2 Timothy 2:2:
And the things you have heard Me say in the presence of many witnesses entrust to reliable people who will also be qualified to teach others.

Paul reminds us of the importance of sharing our faith, and Godly knowledge with others. Whether through mentorship, sharing your story/testimony of your affliction, or simply living as an example of God’s power, love, and wisdom. In this time we are given, pass it on!

#ChronicIllness #ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain #MitochondrialDisease #IrritableBowelSyndromeIBS #POTS #Dysautonomia #HypothyroidismUnderactiveThyroidDisease

(edited)
Most common user reactionsMost common user reactions 9 reactions 1 comment
Post
See full photo

Mercy New by Melanie R.

Mercy New by Melanie R.

As You wake me in the night,
to speak to me as I write,

brightness covers darkness,
Lord, we thank You for your light.

Each morning
mercy new,
the dawning break of day.

The bread was broken for us,
to restore Your Mighty Way!

Your returning day approaches,
guidance needed most-

Your light has seen us through it,
Our lampstand; Heavenly Host.

A lighted path before us;
Not lost,
You led the way.

Opened eyes;
burning bright…
we praise Your Holy Name.

Father in Heaven,
The light that guides and shows us the way. Thank you for kindling Your Light of purity and allowing Your divine burning light to be seen. Seen to light the way of our path, to shine our testimony in the midst of great heavy darkness the way The Light of Christ anointed our faith.
One spark lights an entire room. Your mercy is fresh and new each morning as The Light of The World. The Great and Mighty Lampstand of constant presence shining before this world! Your light shines above the darkest shadows and empowers us to have the strength to overcome, as you have overcome every work of darkness! Praise God! Your Holy Light pours wisdom and chases darkness out. Heaven let your light shine down on us! We thank you for bringing mercy, life, and light in each dawn of day.
In Jesus’ glorious name,
Amen.

Psalm 106:1
Praise The Lord! O give thanks for He is good! For His mercy endures forever.

1 Peter 2:10
Once you were not a people, but you are now the people of God,… which had had not obtained mercy, but now have obtained mercy.

The Way, The Truth, and Life!
Shine your light! Give Light!

#RareDisease #sjogrens #MitochondrialDisease #PrimaryImmunodeficiency #ChronicIllness #HypothyroidismUnderactiveThyroidDisease #PosturalOrthostaticTachycardiaSyndrome #ChronicInflammatoryDemyelinatingPolyneuropathy #Dysautonomia #InsideTheMighty #ChronicPain #RheumatoidArthritis

(edited)
Most common user reactions 17 reactions 3 comments
Post
See full photo

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.

Please also visit:
Melanie’s Melody on YT.
Come and view these encouraging Christian stories with music, audio, and animations.

God bless! Thank You!

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

(edited)
Most common user reactions 5 reactions
Post
See full photo

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

(edited)
Most common user reactions 14 reactions 3 comments