Mitochondrial Disease

Join the Conversation on
Mitochondrial Disease
4.4K people
0 stories
389 posts
About Mitochondrial Disease
Explore Our Newsletters
What's New in Mitochondrial Disease
See full photo

I Wear My Stripes For Rare Disease!

Rare disease indiscriminately strikes, and understanding life’s plan through the complexities can be overwhelmingly challenging; but also an opportunity beyond the suffering.

Although medical technology has advanced and new treatments have been discovered; rare disease often times have no cure, are misunderstood, difficult to diagnose, and be provided effective treatment for.

Many rare diseases involve multiple organ system dysfunction infiltrating the genetic blue print, which wreaks havoc throughout the entire body.

It’s a long, arduous diagnostic journey for not only the rare disease patient, but also for the dedicated medical professionals, friends/family standing by them, and supporting the rare disease sufferer through the great unknown of rare chronic illness.

Thank you for prayers, caring & sharing!

I wear my stripes in support of Rare Disease!

Wear Your Stripes in Support of Rare Disease Day February 29th, 2024!

Thank you Jesus!
…and by His stripes we are healed!
God Bless!

#RareDisease #MitochondrialDisease #SjogrensSyndrome #sjogrens #IrritableBowelSyndromeIBS #RheumatoidArthritis #ComplexRegionalPainSyndrome #ChronicIllness #ChronicPain #IdiopathicIntracranialHypertension #PeripheralNeuropathy

10 reactions
See full photo

Mount Calvary by Melanie R.

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,
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

11 reactions 4 comments
See full photo

SECRET PLACE by Melanie R.

Secret Place by Melanie R.

I close my eyes, but now I see.
Climb up into His apple tree.

Go running through the golden hedge,
blessed orchard on the river’s edge.

A prayer to lift the lowly soul,
a filling from a flowing bowl.

The sea steps forward to the sands,
as music plays from angel’s hands.

Strumming strings amongst the sky,
refreshing breeze calls, “Adonai!”

Hallelujah Lord!
We praise your name!

Safe in your arms,
our secret place.

#ChronicIllness #ChronicPain #MitochondrialDisease #IrritableBowelSyndromeIBS #MightyPoets #InsideTheMighty #HypothyroidismUnderactiveThyroidDisease

23 reactions 3 comments
See full photo

Nocturnal Light by Melanie R. #ChronicIllness #ChronicPain #MitochondrialDisease #IrritableBowelSyndromeIBS #CheerMeOn #MoreDiseases #IfYouFeelHopeless

Nocturnal Light

I was the school spelling bee champion in my 8th grade class. I can remember the ambivalence of walking up to the microphone; looking out into the crowd. Only squinting above the sea of silhouettes, as the stage lights were blinding.
It was down to myself, and one student.
The assembly room was silent except for my quivering nerves, and best classmates whispering cheers in the front row.
Nocturnal was my winning word!
Nocturnal?…meaning darkness?
Confusion…? How was this my word?
It would all become crystal clear, and quite a life theme through the pitch black reality of chronic pain/rare chronic illness.
A weighted stone tossed off the cliff in the nocturnal abyss which is actuality of chronic pain/illness. Splash! It will never reach the bottom.

My prize for winning the spelling bee?
A dictionary. A book of words and meaning.

A holy transformation from nocturnal darkness into His everlasting light.

It was Heavenly Father foreshadowing my predestination, and ultimate full spiritual restoration. I would persevere nocturnal darkness enduring chronic pain; but I would indeed find true meaning in His Holy Book.
Many eyes, on earth, and in the heavens; witnessing my true living testament for which I have become very thankful for!
My true reward and fulfillment of light!
Receive The Light Jesus came to bring for all of us! All praises to The Most High illuminating our way!

The sharpest pain
will overcome;
The darkest night,
The Rising Son.

Strewn bright across
nocturnal nights,
A torching dawn
of glowing Might!

He brought me forth across the stage,
and spelled it out,
a glorious praise!

Job 12:22
He uncovers the deep out of the darkness, and brings deep darkness to light.

John 8:12
Again, Jesus spoke to them, saying, “I am the light of the world., Whoever follows me, will not walk in darkness, but will have the light of life.
Psalm 112:4
Light dawns in the darkness for the upright; He is glorious, merciful and right.

#ChronicPain #ChronicIllness #InsideTheMighty #RheumatoidArthritis #InsideTheMighty #MightyPoets #MightyTogether #Christians

6 reactions 2 comments
See full photo

Chronic Pain by Melanie R. #ChronicIllness #ChronicPain #RheumatoidArthritis #MitochondrialDisease #BackPain #MightyPoets #MightyMoment #TrigeminalNeuralgia

Chronic Pain

Through battles of despondency,
Rare chronic illness muckings.
Hear echoes of their laughing,
rub hands of their stalkings.

Stinging pain;
A spiritual world war.
Meant to divide and conquer,
those standing by the sword.

My burden of my symptoms,-
it’s tortuous attacks.
They’re one behind the other;
My light seen,

A ship in fog kept idled.
My engine just won’t start.
Reaching for my Bible-
as my body falls apart.

Can spirit separate from body?
to escape the suffering?
Crude hell of inflammation,
raging fire from within.

A rumbling embodiment;
endless lava burning–
proclastic hyperglow
emitted from my yearning.

Feel branded.
Hot pokers of this thorn,
attacking my body…
I lay here and I mourn.

Felt unclothed out in winter,
I shivered on my own.
I needed Him beside me,
to clothe me, bring me home!

A martyr full of valor,
burned alive for faith,
a yesteryear believer,
the blood runs through my veins.

Coursing and crying for justice in pain, Lamenting in writhing…
My tongue calls his name!

He heard me,
procured me,
Bottled my tears.
Filled me of healing,
replaced all my fears.

Cut open,
I’m slaying.
Filleting of flesh,
I share in His suffering,
soul-fired and blessed!

In cells of his captors
Paul sang of His songs,
The Word was his strength-
I sing all day long!

Have rhythm,
Give glory!
Mountains have moved!
My symphony of suffering,
sweet melody of truth!

#AutoimmuneImmunodeficiency #CheckInWithMe #InsideTheMighty #Bursitis #ComplexRegionalPainSyndrome #MightyTogether #BackPain #RheumatoidArthritis #MightyPoets #ChronicPain #MitochondrialDisease #Disability #Christians on the mighty

See full photo

An Extraordinary Calling by Melanie R. #ChronicIllness #ChronicPain #MitochondrialDisease #RheumatoidArthritis #IrritableBowelSyndromeIBS #MightyPoets

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.

#Arthritis #BackPain #ChronicIllness #ChronicPain #ComplexRegionalPainSyndrome #HashimotosThyroiditis

7 reactions 2 comments
See full photo

I Surrender All #ChronicIllness #ChronicPain #IrritableBowelSyndromeIBS #RheumatoidArthritis #MitochondrialDisease #CheckInWithMe #christiansonmighty

🎶I surrender all! How great is thy faithfulness!
I surrender, and lay upon your feet not only in pain, but in praise for how great your faithfulness is.
You Lord are my praise!
I'm upheld in your righteous hand, and have already been restored! Although scarred and healing, you have bound my wounds. I have been spared, and you heard me when I called out to you in my distress. Each tear was bottled. My spirit was not crushed in pain.

Mark 5:34
And He said to her, "Daughter, your faith has made you well; go in peace, and be free from your suffering!"

Mark 9:23
"If you can?”, said Jesus. "Everything is possible for one who believes."

3 John:2
Dear friend, I pray that you may enjoy good health, and all that may go well with you; even as your soul is getting along well.

Romans 8:15-17
So that you have not received a spirit of fear that makes you fearful slaves. Instead, you receive God’s spirit when He adopted you as His own children. Now we call him, “Abba, Father.” For His spirit joins with our spirit to affirm that we are God’s children. And since we are his children, we are His heirs. In fact, we are heirs of God’s Glory! But if we are to share in His Glory, we must also to share His suffering.

7 reactions 4 comments

The Burden of Navigating Healthcare and Societal Challenges

Part 1 of 2 Living with a chronic illness is a challenging journey that millions of people around the world face daily. I have lived with chronic, or persistent, neuropathic pain for over 37 years following a near-fatal motor vehicle accident and in 2021 I was diagnosed with mitochondrial disease, a rare genetic disorder. Both have, and continue to have, a significant impact on my life.

When considering chronic illness, from managing symptoms to navigating healthcare systems and societal expectations, those living with chronic conditions often find themselves grappling with a complex web of difficulties that can impact their overall quality of life. For some, they may be accused of malingering to achieve secondary gains.

Examples of secondary gains include “avoiding onerous tasks/work, or rewards opioid-seeking behaviours”. [1] I would offer that for most people living with a chronic illness, this is not the case. Understanding this may be true in very limited instances, I believe for the vast majority who live with a chronic illness, their primary losses significantly outweigh any perceived secondary gain. I would suggest that most people don’t want to be living with long-term health conditions that must be managed daily; it’s physically and emotionally exhausting, stigmatizing, demoralizing, and often strips one of their identity.

In this article, I’ll discuss some of the reasons why some individuals with chronic illnesses, including persistent pain, don’t want to be living with their conditions by shedding light on the multifaceted challenges encountered in healthcare and society.

When considering the healthcare challenges people face, we’ll consider financial strain, limited access to specialized care, and mental health implications.

One of the most significant challenges for those with chronic illnesses is the financial burden associated with long-term medical care. In considering chronic pain as an example in Canada, the total direct (health care) and indirect (lost production) cost of chronic pain in 2019 was estimated to be between $38.2 and $40.3 billion.[2] However, not all costs are covered by the healthcare system and people living with pain and other long-term conditions must pay for travel and accommodations, specialized medical treatments, and medications. The costs of medications, treatments, and regular doctor visits can quickly accumulate, placing significant strain on individuals and their families. In some cases, the financial burden becomes so overwhelming that it contributes to a sense of hopelessness and frustration. For those who are no longer able to work, or must work a reduced schedule, and are fortunate to have workplace benefits, disability payments typically provide payments less than their regular income.

Further, access to specialized healthcare can be a significant barrier for individuals with chronic illnesses. In some regions, there may be a shortage of healthcare professionals with expertise in certain conditions. This can lead to long wait times for referral appointments to specialists and a lack of continuity in care, making it challenging for people to manage their conditions effectively.

Several studies suggest that people with a chronic disease are at risk of psychological distress [3] and chronic illnesses often come with a heightened risk of mental health issues such as anxiety and depression. The emotional toll of living with a condition that requires constant attention and adaptation can be overwhelming. Unfortunately, mental health support is not always readily available or integrated into an overall healthcare plan, exacerbating the challenges faced by individuals with chronic illnesses.

While healthcare challenges are difficult enough, societal challenges can be more so as they are often deeply personal. In this, we’ll consider the issues concerning stigma and misunderstanding, limited accommodation, and loss of identity and independence.

Society’s lack of understanding about chronic illnesses contributes to the stigma surrounding them. Individuals often feel judged or marginalized, leading to a sense of isolation and alienation. The societal pressure to conform to a certain level of physical or cognitive ability can exacerbate feelings of inadequacy among those with chronic conditions.

Concerning accommodations, society still lacks sufficient accommodations for individuals with chronic illnesses. Whether in the workplace, educational institutions, or public spaces, the absence of necessary adjustments often hinders the participation and inclusion of individuals with chronic conditions. This lack of accessibility further compounds the challenges people face.

In Canada, this is underscored by a 2008 Supreme Court of Canada decision that upheld an employer’s termination of an employee after missing more than two and a half years of work due to physical and


Scars and Healing #ChronicIllness #ChronicPain #RheumatoidArthritis #MitochondrialDisease #SjogrensSyndrome #IrritableBowelSyndromeIBS #CheckInWithMe

Scars and Healing

Scars by definition are a healed wound. Think about the scars you’ve collected on your body throughout your life.
The painful bumps and bruises, falls and surgeries that formed raised cuts that were once bleeding, and needed tending to in the process toward ultimate healing.
You cleaned, bandaged, checked to ensure there were no infection, and overtime witnessed, and experienced the miracle of healing. A lasting symbol of pain, time, and healing forming a perfect imperfect scar now in its place.
Resurrected Jesus chose to keep the scars in His hands, and feet, even after ascension, as a reminder to us of all he endured for us as a living sacrifice.
A sign of victory over death!
Jesus knew the doubting Thomas’s of the world would not believe unless they saw with their own eyes the scars of His suffering.
A correlation to some of the struggles of invisible illness and chronic pain itself, as some symptoms cannot be seen.
I scan my body over the countless scars,…seen and unseen. Some on my body, and some on my heart, but through life’s suffering, I have been transformed to a scar of healing.
My scars are victory over pain! An overcoming with unabounding strength (chadzek) to persevere in chronic illness, and life’s true purpose!
My countless surgery scars are a reminder of my calling to use my voice, and all I’ve healed along the way.
Each scar was painfully earned through a process of long-suffering and healing; and my voice will give praise, honor, and glory!
In my story, as I sing this song of hope of full restoration, I too, have chosen to keep my healed scars as my testimony of sealed faith to our Glorious Father!
My question to you is, will you keep your scars?

#christiansonmighty #IfYouFeelHopeless #InsideTheMighty #CheckInWithMe #Caregiving #Gastroparesis #BackPain #CentralPainSyndrome #ComplexRegionalPainSyndrome #MightyTogether #christiansonthemighty

3 reactions