Primary Immunodeficiency

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Surrendering by Melanie R.

Surrendering by Melanie R.

And you should remember that the Lord your God led you…to know what was in your heart!

You endured tears only God saw!
You were tested and you passed!

The fire that came to destroy you only refined you.

The weight that came to crush you, only built your strength.

You didn’t give up-

through bloody bruises of pain,

scars of healing,

to your calling!

You didn’t run from the fire, you allowed it to shape you!!

You forgave when you could have fought back!!!!

You loved when your own heart was breaking!!!!

You showed up when you were bleeding inside!!!!

God saw the surrendering!

You prayed…

Heaven is declaring that you are the one that God will reveal!

Divine placement!

Proven!

Ready!

He will not forget your work to help His people!

Blessed is the one who perseveres!

Deuteronomy 8:2
Remember how the Lord your God led you all the way in the wilderness these forty years, to humble and test you in order to know what was in your heart, whether or not you would keep his commands.

Psalm 56:8
Record my misery; list my tears on your scroll—are they not in your record?

James 1:2-4
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.

1 Peter 1:7
These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world."

Isaiah 43:2
When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.

2 Corinthians 4:8-9:
We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.

Matthew 6:14-15
For if you forgive other people when they sin against you, your heavenly Father will also forgive you. But if you do not forgive others their sins, your Father will not forgive your sins.

Luke 22:42:
Father, if you are willing, take this cup from me; yet not my will, but yours be done.

#InsideTheMighty #PrimaryImmunodeficiency #MightyPoets #MitochondrialDisease #MightyTogether #ChronicIllness #ChronicPain

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Fly High by Melanie R.

Fly High by Melanie R.

Come on, we're ready to go,
To take the flight of faith…let trust flow.
Leaving the false security's nest,
in His hands, we can go…
we'll find rest.

Nested in the Tree of Life,
prayer roots run deep,
Though the winds and rain may come,
shielded by belief,
you'll be forever free.

So free!
So free!

He taught me to fly;
To reach new heights!
With visions clear and eagle's sights.

Higher than mountains,
higher than pain…
In His arms, I find peace,
freedom released.

Fly fly fly!

Higher than the firefly's twilight gleam,
He carries me close, a whispering dream.
In His embrace, my heart takes flight,
Soaring through shadows, chasing the light.

So, come on, let's take this flight
With His promises, we touch the sky,
And in His grace we take flight!

Fly high!
Fly high!!
Oh so high!

I love my Lord Jesus!

Colossians 2:6-7
So then, just as you received Christ Jesus as Lord, continue to live your lives in Him, rooted and built up in Him, strengthened in the faith as you taught, and overflowing with thankfulness.

Romans 4:20-21
Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what He had promised.

#MitochondrialDisease #InsideTheMighty #PrimaryImmunodeficiency #MightyPoets #CheckInWithMe #ChronicIllness #ChronicPain

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Sanctified by Melanie R.

Sanctified by Melanie R.

My Lord, Our God, Our fortress
Stands watchful over all.

Rock of ages,
past and present,…
and time that’s yet to come.

His faithfulness forever
His plan for our lives complete.

Drawn up before the sands of time;
His blueprint plan for my life.

Many challenges rise
and through-
His loving grace abounds…

shielding us,
guiding us,
providing assurance!

Covering us through the night-
Sanctified In unity!

A shout of hopeful praise-
The bridge to salvation was laid

For God has summoned His faithful,
His chosen ones to follow.

God, our strength, and shield;
In love and faith, our spirits healed

With God our Father,
We embrace the future,
cast aside all our fears.

Only through the love and life of Christ-
we’re sanctified!

Thank you Jesus!

You saved my life!

It was You all the time-

I give you my life!

Sanctified!

Sanctification:
the process by which believers are set apart for God's purpose, made holy, and conformed to the image of Jesus Christ.

It is an ongoing work of the Holy Spirit in the life of a believer, enabling them to live a life that honors and glorifies God.

The process of sanctification involves:

Regeneration:
At the moment of salvation, the Holy Spirit regenerates a believer's heart, giving them a new nature that desires to please God.

Justification:
Through faith in Jesus Christ, believers are declared righteous before God.

Transformation:
As believers continue to grow in their faith, the Holy Spirit works to transform their thoughts, desires, and actions to align more closely with God's will.

#InsideTheMighty #PrimaryImmunodeficiency #MitochondrialDisease #MightyPoets #MightyTogether #CheckInWithMe #ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain #ChronicIllness #

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Through the Valley by Melanie R.

Through the Valley by Melanie R.

The blood declares your future-
and can’t be over ruled!
Jesus’ sacrifice paid the way to victory.

If you see the shadow,
light is present.

We go THROUGH the valley…

We’re not in the fire to die;
We’re in the fire to shine!

You are almost there.

Not delayed-
Destined.

Let faith rise again.

Holy nation,
God’s special possession
to set others free!

The blood has spoken,
the cross has sealed it!

This is The hour!

Almighty God,
the ancient of days,
unmatched Majesty,
we come before you,

We know who You are-
You are the God who spoke the stars-
into existence
You hear the whispers
of our weary hearts.

Claim us!
Mark us!
We stand under the shadow of the cross!

Thank you Father!

Let those with ears to hear, hear and God bless you mighty warriors with divine healing over your body, mind, and spirit!

Amen and Amen!

#InsideTheMighty #PrimaryImmunodeficiency #MitochondrialDisease #ChronicIllness #ChronicPain

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Fire! By Melanie R.

Fire! By Melanie R.

Forged in the fire for impact.
The test before the throne through the wilderness…into the wonder.
Stay faithful!!
Not to breakdown,…
but breakthrough.
Pass your test!
Take your place in the kingdom.
Holy fire to awaken!
We rise!
We endure!
We over come as pure gold!
Revived for glory!
Broken chains of shame!
Shaking thundering voice,
declaring that this will birth me!!!

The crushing that unlocked the oil-
To burn through the darkness,
and burn through the night.
Consecration-
and burned in our bones,
for His will, and processing light!

Fire!

Power clarity!
Marked by glory!
Reflecting the spirit in praise!
Fire!

1 Peter 1:6-8
In this you greatly rejoice, though now for a little while, if need be, you have been grieved by various trials, that the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ.

#ChronicIllness #ChronicInflammatoryDemyelinatingPolyneuropathy #MitochondrialDisease #InsideTheMighty #PrimaryImmunodeficiency #MightyPoets #MightyTogether #ChronicPain

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Chosen Soldier by Melanie R.

Chosen 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 us.
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 of Righteousness,
Lamb Sheared without a sound.

Unblemished armor,
Clothed in strength.
Mercy’s knight-
Shield of faith;
provides a fortress to
Reflect His Holy Light!

Covered by King’s glory.
Truth belt buckled in.
Following His Story,
fueled this fire from within.

Yielded body
Willing forge.
Faithful soldier;
Unsheathed sword.

Marching onward
torrential battles…
crushing giants forThe Lord-

Designed to knock down strongholds,
Conquer fear, and destroy doubt.
Anoint us as we travel,
steadfast martyrs for the crown.

To God be the Glory!

#InsideTheMighty #MightyPoets #PrimaryImmunodeficiency #MightyTogether #MitochondrialDisease #ChronicPain #ChronicIllness #ChronicInflammatoryDemyelinatingPolyneuropathy
#RareDisease

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J Pouch surgery experiences? I need j pouch after total colectomy w ileostomy has anyone had this surgery?

I had toxic megacolon that required emergency open surgery total colectomy w ileostomy. I found out that the j pouch surgeries to reconnect my colon need to be open invasive surgery cutting open a large scar from abdomen to pubic bone from the colectomy. The colectomy and ileostomy was the most painful experience, the surgery was over 12 hrs w complications during and after. I can’t imagine reopening this scar and all the scar tissue around it 3 more times. I’ve had 8 spinal reconstruction surgeries in 10yrs w titanium screws, plates & rods including replacing my tailbone - those surgeries hurt less than the colectomy. Has anyone had j pouch after colectomy? I’m worried about pouchitis and other infections bec I have a primary immunodeficiency disorder? I read ppl have 8-12 bowel movts after surgery? How long does recovery take? Is the pouch connected and working after first surgery? Is life every normal w a pouch?
#CrohnsDisease #DegenerativeDiscDisease #Colectomy #Ileostomy #jpouchsurgery
#Pouchectomy
#colorectalsurgery #Scoliosis #PrimaryImmunodeficiency #InterstitialCystitis #demyelinatonsyndrome #demyelineatingsyndrome

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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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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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