Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

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Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
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Dealing with medical issues

Last year 25th of Feb I was in for an emergency toxic megacolon opp already in septic shock, total colectomy was done. In Aug last year dr. did a hartman reversal ( small intestine link to rectum)

Feeling much better but scared of getting sick again because I was a whole month in hospital.

Dec 2022 I was diagnose with CIDP ( chronic inflammation demylation polyneuropathy). On treatment IVIG every 6 weeks.

This year 18th of Nov my Neurologist diagnose me with PI ( primary immunodeficiency). What I life chancing experience. Now I must get IVIG every 4 weeks for the rest of my life.

Still learning new thing everyday.

I am 45 years of age.

But my parents do not understand what am I going through and do not understand the new choices I must make to stay healthy.

Difficult to except new changes and choices.

And I am dealing with mental health issues aswell because of my medical issues.

So my dad's opinion is the dr's does not do their jobs, but he do not understand what I was dealing with.

So I am depressed and anxious and struggle to cope and have PTSD aswell.

I know their are people with a lot more on their plate.

But I feel so alone in all of this.

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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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I'm new here!

Hi, my name is Bett2024. I'm worried about long term prognosis of my diagnosis - CIDP, which carries with it anxiety and depression due to its chronic nature and disabling symptoms.

#MightyTogether #Anxiety

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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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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

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A Heart Set Free by Melanie R.

A Heart Set Free by Melanie R.

A great winded rhythm underway; prickled readiness underfoot. A mission called into blended shadows- undulate in shades of smoke as hope glimmers.

Drumming a cleared path of yearning webs for justice. Where a brightened light pierced an open door. Candlelit wonders motion the clouded poufs to view a saved heart…set free.

Chosen and preserved.
A living hope guarded in faith.
Examined, mourned, pressed, scarred, shattered,…repaired;
never faltered, never failed.

Search me, Oh Lord, and know my heart.
Lead me through the everlasting way.
I’ve been tested, and tried…know I am true-know my heart. You are my indwelled heart pounding through our shared domain. Monitor my steadfast rhythm and the intricate design of each ticking; of each pulsed beat transformed by this undeniable salvation.

Echoed chambers of my heart.

Centered rhythm deepest part.

Search me, Lord, and see I’m true-

slated clean-each beat for you.

Five waves count each beat’s 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 139:23
Search me Oh God, and know my heart.

Matthew 6:21
For where your treasure is, there your heart will be.

Proverbs 3:5
Trust in The Lord with all your heart, and lean not unto thine own understanding.

The Lord searches the heart.
Give God your whole heart. Stay strong Mighty Warriors!

#ChronicIllness #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #Cardiomyopathy #RareDisease #ChronicPain #InsideTheMighty #PrimaryImmunodeficiency #ChronicInflammatoryDemyelinatingPolyneuropathy #RheumatoidArthritis #HypothyroidismUnderactiveThyroidDisease

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