Axonal and Neuronal Neuropathies

Stripes & Stars of Rare Disease
By Melanie R.

Our faith as our anchor.
Our hope’s guiding light!

Amidst all the struggle,
we share in our plight.

Bringing awareness;
to comfort and guide.

To face rare disease
locked arms-
side-by-side.

A journey set forth,
uneven terrain.

Traveling on suffering,
forged purpose in pain.

A chorus of voices
uniting in song-
ring out together,
but battles go on…

Our trials and triumphs,
resilience and strength,
brought us all here
on rare disease day!

So join us in chorus,
wear stripes to support-
our healing begins,
it starts in our heart.

For stripes shine like stars,
by stripes we are healed,
Restoral by scars
Our voices they hear.

Remember Rare Disease Day is February 29th, 2024!
We share in the suffering and the glory!
Stay strong and God bless you all in a mighty, mighty way!

#ChronicIllness #ChronicPain #IrritableBowelSyndromeIBS #ComplexRegionalPainSyndrome #AxonalNeuronalNeuropathies #InsideTheMighty #MightyPoets #MightyTogether #christiansonmighty

Mount Calvary

They don’t mind to see me-
my blood and body thinned.
My bruises of the beatings,
physical weakness I’ve been in.
Wrapped up in all their doings,
scoffing-
walking by.
Obscured to all the suffering,
the price –
the prayers I’ve cried.

I’m up here on my cross,
I wish that they could see,
the moments that I suffer through the pain…the misery.
Have they come to mock me?
Rather than reprieve?
Do they like to see me suffer?,
with every breath I breathe?

Said if I was anointed,
meander my way down-
If I’m a chosen one of God,
put on my rightful crown.
They plundered and they pilfered,
all that I had left…
and only came to watch me die
atop this mountain cliff!!

No broken bones
but wounds to bear.
Water and blood,
A scar formed there.
A symbol of true suffering
brought down upon The Mighty King.

It’s done –
it has been finished!
His story that will reign!
If we share in of His suffering,
our glory’s shared in pain.

He kept His scars
hands, feet, and side
to prove His love,
His sacrifice.

To all my friends,
it won’t be long.
Put on your cross,
and just hold strong!
Trust Jesus has the victory,
saved since that day on Calvary!

#ChronicIllness #ChronicPain #MitochondrialDisease #sjogrens #BackPain #RheumatoidArthritis #MightyPoets #Christians #MightyTogether #ComplexRegionalPainSyndrome #AxonalNeuronalNeuropathies

An Extraordinary Calling

How can I?… in a broken body with chronic pain, and chronic illness do what I am called for?
Wouldn’t I be more useful if I could function better?

Gideon was chosen by God to save his people from invaders, but his response to God was “Oh, My Lord,… how can I?… I am the weakest,…and the least!”
God called him, “A Mighty Man of Valor!”, and yet Gideon still felt inadequate, and unsure if he could accomplish what God had destined him to do. He second guessed himself even after seeing the face of an angel speak, “The Lord is with you, GO!”
Gideon and his family were considered outcasts; living divided, and looked down upon by others, which only enhanced his fears. It was humanly impossible on his own, and the pressures to perform, and come through for his people only surmounted more doubt.
God asked Moses to stand before pharoah and demand he let his people go. Moses had a speech impediment, and was not experienced enough for the job in his mind. In his defeated doubt, he told The Lord to send someone else. Moses did not believe he had the wherewithal even after experiencing God’s magnificent power leaving Egypt.
As Moses stood at the Red Sea with pharaohs chariot closing in; the people at the waters edge with nowhere to turn, he was again caught in the net of fear.
In that moment, the Lord told Moses to raise his rod! The deep waters then parted, so they could cross on dry ground into the promised land.
It’s not that we will never have fear, but knowing who is behind our staff,…who is behind our army; even when we are at weakest in our body.
Friends, just in these few instances, we can begin to understand that it’s not what we see in ourselves, but the power and strength we receive through Christ. He can see your value and purpose. Even on days when chronic pain is relentless, and symptoms of chronic illness seem to get the best of us.
If He believes we can, should we not believe? God did help Moses deliver his people from oppression, and Gideon’s army did go onto victory. The Lord will established you by His Heavenly Hand. He will give the courage and boldness transferring us into a permanent place of strength in the Lord!
The impossible can be done!
Where He is, so we are!
We are righteously established, and can bring honor in lowly bodies. We can experience holy acceleration into God’s rightful place of purpose through our trusting faith!
Thank you Lord Jesus!!
We are more than conquerors in Christ, and are fully armored. Let us yield our double swords, and stare the enemy straight in the eye! Have blessed assurance that God is with us through our fiery battles.

Isaiah 41:13
Do not fear I will help you.

1 Corinthians 15:57
But thanks be to God! He gives us victory through our Lord Jesus Christ

Galatians 2:20
… So I live in this earthly body, trusting in the Son of God, who loves me, and gave Himself for me.

#BackPain #ChronicPain #ComplexRegionalPainSyndrome #HashimotosThyroiditis #PosturalOrthostaticTachycardiaSyndrome #AxonalNeuronalNeuropathies

#LivingWithPOTS #EhlersDanlosSyndrome #Disability #heart aneurysm #Migraine #ChronicLungDisease #JointHypermobilitySyndrome #Arthritis #AxonalNeuronalNeuropathies #SmallFiberNeuropathy #chronic bronchitis pneumonia #ChronicFatigue #TemporomandibularJointDisorders #Fibromyalgia #Myositis #Insomnia #ThyroidNodules #diaphram disorder #VocalCordDysfunction #MajorDepressiveDisorder #EatingDisorders #toomuchtoremember