Mitochondrial Disease

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Gabbie’s Blog Post That I Found On The Sisters Of Life Website About Her Life Journey Because I Can’t Sleep (Her sister is a nun)

My Thoughts I miss you Gabbie, but I know you are in Heaven. I can’t imagine what it is like over there it must be beautiful. I mean what could be better than worshipping all day long and finally pain free Amen!
When I was twelve years old, I noticed that my left eye started to droop and my energy began to decline. I was sleeping 12 hours a night and taking three- to four-hour-long naps a day. I went to several doctors to determine what was going on. I was diagnosed with Kearns-Sayre Syndrome (KSS). KSS is a mitochondrial disease that affects my eyes, height, muscles, energy, and heart. My teenage years were difficult as I battled the burden of not being like everyone else. It was overwhelming.
I told my mom I wanted to go to Lourdes, France, to be healed. Lourdes is where Our Lady, under the title the Immaculate Conception, appeared to St. Bernadette in the year 1858. Many who pilgrimage there have been healed in the miraculous spring.
Our family of seven journeyed to France; however, I did not receive the instant healing I wanted. So much effort went into getting our family there, that I felt like I let everyone down when I was not physically healed. I was bitter and heart-broken. I thought God didn’t want me to be healed.
I tried giving Him the silent treatment. I took down all of my holy images of Jesus and stopped praying. I went to church with my family and prayed before meals, but I felt nothing. The way I saw it, God didn’t love me enough to heal me – to heal me how I wanted to be healed. I entered a dark place in my life, telling myself I was hopeless. Several times, I felt I did not want to carry on with my life; I wanted to end it. Little did I know at that time that I was being healed, just in a different way.
I can’t exactly tell you how I conquered my depression and anger. I wish I could remember the exact day, the exact moment my heart softened, but I can’t. I just know that my heart changed when I realized God didn’t want me to suffer. I started praying again and put my holy statues and pictures of Jesus back in their rightful places – back in my heart. I suppose that you can’t have light without darkness; I look back at this time in my life and thank God for never leaving me, even when I tried running from Him. I am grateful He had hope in me.
Even so, I definitely still had hard days when I wished and prayed for miraculous healing. In 2015, I experienced heart failure. It was the scariest day of my life when I heard those words, “Heart. Failure.” I had to prepare for serious heart surgery, and for the first time I was facing and fearing death. I was in the hospital for a month.
When I was in the hospital, Sr. Jordan Rose shared with me these two words: “Take Heart.” It says in Psalm 27: “Let your hope be in the Lord; take heart and be strong; yes, let your hope be in the Lord.” This means, “Have courage! Have hope!” I came to know that “my health may fail, and my spirit may grow weak, but God remains the strength of my heart. He is mine forever” (Ps 73:26) .
My experience of suffering has brought me closer to Jesus. I am strongly inspired and drawn to Blessed Chiara Luce Badano. Her words, “For You, Jesus…If You want it, I want it too”, remind me to trust and have hope in the Lord’s plan for me. When I look beyond myself, I can unite my suffering with that of others, and I can unite my heart with the heart of Jesus. I find myself praying throughout the day, “Jesus, I trust in You.” When I wake up, when I am anxious, when it’s quiet, in all things, I pray: “Jesus, I trust in You.”
This journey hasn’t been easy, but my family and friends have carried me through. In hard times, my family looks for the good. We are a family of hope.
Hope is believing something good is going to happen. If you are struggling to hope, I recommend reading Fr. Michael Gaitley’s book, 33 Days to Merciful Love. This book encourages you to hope like Mary did at the Cross, to believe in God no matter how dark life gets, and to praise God no matter what is happening.

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Soldier by Melanie R.

Soldier by Melanie R.

I am a chosen soldier
in the Army of The Lord.
Presence,
Spirit lifted,
Sovereign Word-
my trusted sword.

I put on Ephesians armor
Found ready,
as we stand.
Together He battles with us,
fight for good, and glory land.

The breastplate of righteousness
adorned across my chest,
protects and helps guide me.
My heart source brightly cleansed.

The helmet of salvation
Covers, and keeps watch.
Shielding darts,
casts down arrows-
diffuses negative thoughts!

Washed robes of white ;
mercy’s priestly gown.
Anointed Oil…
Lamb Sheared-
no sound.

Unblemished armor,
Clothed in grace.
Mercy’s knight
holds shield of faith!

Covered by King’s glory.
Truth’s belt buckled in,
Following His Story
Shoes of readiness tread again!

Yielded body
Willing forge,
Faithful soldier-
Unsheathed sword.

Marching onward
torrential lands
crushing giants,
heads in hand!

We’re designed to knock down strongholds,
Conquer fear,
destroy doubt.
Lord, anoint us as we travel,
steadfast martyrs for the crown.

Thank you Lord for equipping us with the tools to endure!
Stay Strong Mighty Warriors!

Ephesians 613
Therefore, take up the whole armor of God.
That you may be able to stand in the day of evil, and having done all you can, stand firm.

2 Corinthians 10 3-4
For though we walk in the flesh we do not war according to the flesh. For our weapons of warfare are not carnal, but mighty in God for pulling down strongholds.

Isaiah 53:7
He was oppressed and afflicted, yet he did not open his mouth; he was led like a lamb to the slaughter, and as a sheep before its shearers is silent, so he did not open his mouth.

1 Peter 1:18-19
You know that it was not with perishable things such as silver or gold that you were redeemed from the empty way of life handed down to you from your ancestors, but with the precious blood of Christ, a lamb without blemish or defect.

1 Corinthians 5:7
Christ, our Passover lamb, has been sacrificed.

#ChronicIllness #ChronicInflammatoryDemyelinatingPolyneuropathy #MitochondrialDisease #PosturalOrthostaticTachycardiaSyndrome #IrritableBowelSyndromeIBS #PrimaryImmunodeficiency #InsideTheMighty #MightyPoets #MightyTogether #CheckInWithMe

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Crimson by Melanie R.

Crimson by Melanie R.

Crimson red-
against the snow.
My heartache bleeds,
and nearly froze!

I turn to you
and say a prayer,
release me Lord,
from pain
and spare…
my heart from this deep suffering…

the ache,
the hurt…,
my mind
wandering.

Crimson red,
down and blue.
White of snow,
thoughts of you.

Buffalo blizzard…
A frozen cry;
of time felt lost,
and days gone by.

I reach for you;
long to hold you….
Still feel your love around.
It wasn’t just the ordinary,
pure love is what we found.

Although time goes;
will never fade.
Swirls like wind,
still falls like rain.

Our hearts hold onto memories.
Days up,
then down,
like swaying trees.

Crimson red,
Hearts of truth.
Cold of snow,
Thoughts of you.

Red cardinal singing
love’s song of faith.
Holy Water springing,
by pearl o’heaven’s gate
.
A timely whispered love song,
her music sung deep blue.
Sets free-
releases sadness,
as spirit’s called to you.

Consecrated,
Soul guided.
As He too heard our cries,
He knows of all the suffering,
every groaning,
every sigh.

Crimson red
the blood was poured;
robes washed white-
Calvary brought forth!

So shout. Hallelujah!”
and say, AMEN!
to Our Sovereign Lord,
and most earnest friend!

Heart crimson red;
Lord’s Promises True.
He carried The Cross…
and message for you!

John 16:22
Now is your time of grief, but I will see you again. And you will rejoice, and no one will take your joy away.

Romans 8:26
In the same way, The Spirit helps us in our weakness. We do not know what we ought to pray for, but The Spirit Himself intercedes for us through wordless groans.

Psalm 145:18
The Lord is near to all who call Him.
To all who call on Him in truth.

Mark 9:3
His clothes became dazzling white, whiter than anyone in the world could bleach them.

Revelation 7:14
These are they that have come out of great tribulation, they have washed their robes and made them white in the blood of the lamb.

#MitochondrialDisease #HypothyroidismUnderactiveThyroidDisease #RareDisease #ChronicIllness #ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain #InsideTheMighty #PrimaryImmunodeficiency #MightyPoets #CheckInWithMe

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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

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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.

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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

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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

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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.

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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

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