Mitochondrial Disease

Loony Tunes of Suffering

Warner Bros. created years of laughter through their characters on a seemingly unattainable chase. I just never would’ve expected these childhood cartoons would’ve given a foreboding, and biblical representation on what was to come later in life; as chronic pain/rare chronic illness, and my spiritual growth were broadcasted on the television of my adult life.

As children, as soon as we heard the symphonic xylophone intro of Merrie Melodies, our heads bobbed along, and we stared wide eyed at the zoomed in faces featuring Bugs Bunny, Daffy Duck, and Yosemite Sam.

The music was our cue to gather round on the living room floor, and get ready to watch the show! Thinking back, more than just running in circles, maybe these characters had a story to tell other than their famous taglines.
Were they all actually trying to tell a vision?

Eh- what’s up doc?

Like Bugs Bunny, inquisitively I have asked this question to the many physicians I have seen over the years after my full immersion into this Technicolor world of chronic illness and invisible disability. Like me, I am not sure if Bugs received a satisfying answer to that question either.

“Suffering succotash!” Mel Blanc served up suffering succotash to Sylvester‘s famous catchphrase to Tweety Bird.
Although Sylvester never actually caught Tweety, he never gave up on his pursuit.
An example to continue on in advocating and persevering all these years later through the lunacy of medical complexities.
I was certain Sylvester was attempting to free Tweety from his cage so that they could play together.
Suffering succotash has numerous dictionary translations, and surprisingly, one meaning suffering savior. This bringing to mind how I would humbly and diligently call upon the Savior Jesus to free me from the cage of suffering.
Daffy duck was also known to call out for suffering succotash when he was perplexed with life.
Arriba translated as encouragement.
While running from his adversary, Speedy Gonzales called out, “Arriba Arriba. Andale, andale!”, as a cloud of dust covered ensnarements.
It was another telling sign to be quick to call for encouragement!

One of the most memorable characters was the red bearded, gunslinger Yosemite Sam, and how he loved to harass Bugs Bunny. What was Bugs’ his reaction to Yosemite Sam’s temper tantrums?
He had no fear, and he stood tall while continue to munch on his carrot!
Yosemite Sam could have had a unwritten Christian background, because he told Bugs Bunny to say his prayers!
So many prayers are needed to endure long-suffering, and Yosemite Sam had sound advice.
Rare chronic illness/chronic pain can feel as heavy as the grand piano falling from the sky out of nowhere every day. Sometimes in suffering, it seems the only downy soft commercial break is the time spent in connection to God.
As we spend our time in prayer, the word of God comforts us just like the fluffy towels the downy bear bounced on.
Back then I didn’t know the role these catchphrase subliminal messages would have had on my adult life and suffering, but looking back, they were in some ways pixelating God’s love on a Saturday morning rerun of Looney Tunes.

#MitochondrialDisease #SjogrensSyndrome #RareDisease #Disability #HypothyroidismUnderactiveThyroidDisease #PosturalOrthostaticTachycardiaSyndrome #InflammatoryBowelDiseaseIBD #ChronicIllness #ChronicPain

Springfield was on fire.

Johnny had a ring,

Billie didn’t start it,

Taylor-

Fire and Rain.

7 times the furnace,

three boys trust His name.

They held on in the burning …

walked out from that flame.

🔥🙏💪🏻🕊️🛟✨
Keep trusting in your fire!

#MitochondrialDisease #sjogrens #IrritableBowelSyndromeIBS #ChronicPain #RareDisease #PeripheralNeuropathy #ComplexPosttraumaticStressDisorder #PosturalOrthostaticTachycardiaSyndrome

Lifetime with pain
Pin-pricked in pieces
battled set burning,
it’s raging increases.

It’s chronic,
it’s rare.
Flared Inflammation.
Body that failed…
Complete consummation-

It hindered my soul,
Downtrodden and low.
Withstanding the suffering,
It’s tussling wide loads.

Desperate cold nights
Him calling my name,
preserved me on weary
ignited the flame.

Jesus drew close,
For Him I am sure.
Through all of life sufferings
set me to endure.

The poking, the prodding,
the pain with no cure,
for Him in my body and soul-
I’m made pure.

Heavenly Father,
As you searched and centered my innermost core; my faith ignited your reflection.

Spoken into life to forever burn your kingdom light that kindles throughout my heart.

Resounding faith formed like these words…seen by the ones called, preserved, and understood-
His wisdom given in the Holy flame for present and future time.

That I burn-

When monitored you equipped me in palpable hope through Your sovereignty.

Let it resound its course of your reign!

Carry me through the locked chambers of suffering; for the harder the suffering, the higher your plan.
I yield my body and surrender for I know it is all for Your glory.

Father,
Your eternal word created the fire’s dance when shadows appeared consuming.
You poured your Holy anointing on my answered prayers to keep me burning through the endless nights of chronic pain.

That I burn-

Resuscitated from the smoke and suffocation when darkness lurked to extinguish me.
You received me on Holy ground like Moses and the burning bush.
I thank you for the immeasurable strength to walk upright in this purpose.

That I burn-
My light persevered!

Glory to God!

Sampled, probed, poked, and tested true!

Your name is magnified as my spirit burns in rhythm set to your timing.

In these recent few weeks I am recovering from my 2nd hip surgery (10 weeks post-op),
I have received 2 additional diagnoses.
I’ve had both Leg EMGs, left leg biopsies.
I also had an echocardiogram, heart monitor, pain pump maintenance, bloodwork, etc…

I have relentless burning in physical pain, but also my spirit is burning for the true message of our Lord and savior Jesus Christ!

That I burn-
and to God be the Glory!

Stay strong Mighty Warriors and burn on!
I pray for your strength to endure!

#MitochondrialDisease #sjogrens #PosturalOrthostaticTachycardiaSyndrome
#IrritableBowelSyndromeIBS #HypothyroidismUnderactiveThyroidDisease #HashimotosThyroiditis #ComplexRegionalPainSyndrome #RareDisease #PeripheralNeuropathy #Pain pump patient

I was diagnosed with MERRF (a mitochondrial myopathy) almost 20 years ago. My health has been a rollercoaster in those years - I would seem healthy as an ox a few months then bedridden the next. Today I am moving ok, but use a wheelchair to get around outside of my house. My balance and coordination is terrible ( I’ve fallen three times in the last month which required stitches twice on my head). My gross motor strength and ability are a zero and I require plenty of time to sleep.

It has now been a week that my 13 year old daughter and I left the hospital after a 5 week stay. The one person who helped me physically is now with a g-tube, requires the entire pharmacy in one day, has every piece of DME imaginable, and now in a wheelchair of her own. The one who helped me out physically is now completely out of commission and I am now her nurse 24 hours a day.

She is my only living child, my baby, and there is nothing in this world I would not do for her. But I am tired. Caring for my medically complex child as a disabled person is by far the hardest thing I have ever done in my life. It has only been 9 days being home from the hospital and I am beyond drained both physically and emotionally. Physically, this is hard for me because I simply do no have strength and endurance. I often cry because I have trouble getting up off of the floor or pain from walking back and forth from one room to the next. Emotionally, I am exhausted because I have been doing all of this on my own. While in the hospital, both my parents and (now ex) boyfriend said they would help both me and m daughter at home. Now that we are home, my parents don’t help me with meals (I can’t even tell you the last time we shared a meal together), or with anything you would think a parent/grandparent would do. Because I demanded my brother to stop smoking in the house they all stopped talking to me. My then-boyfriend also said he would help, but tells me to “control my emotions” and stop complaining. After 4 years, I thought he would understand and allow me to be vulnerable with him, but I thought wrong. I just broke up with him tonight and to be honest, I am not too sad about it. My daughter is always going to be my #1 and if he can’t support me and ultimately her, then he’s not the one.

But now, more than ever, I am sad and disappointed that the people I thought cared most about my daughter and me abandoned us. They spoke promises that they had no intention of keeping. When I needed love and support most, they all turned their backs on me and left me alone. I am so sad and lonely. I don’t have anybody to talk to. I don’t have a shoulder to cry on or someone to just listen. I am alone and I don’t know what to do. #Caregiving #MentalHealth #MitochondrialDisease #Anxiety #Depression #ChronicIllness

A great winded rhythm under way;
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 puffs 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-
the intricate design of each ticking…
of each pulsed beat transformed by this undeniable salvation.

Jesus, with every heartbeat we thank you for your mercy, wisdom, and preservation.
The Holy temple of purpose is pumping power overflow, and is an endless conduit to strength in suffering.

Take heart mighty warriors!
God be with you all!

#MitochondrialDisease #sjogrens #PosturalOrthostaticTachycardiaSyndrome
#IrritableBowelSyndromeIBS #RareDisease #HashimotosThyroiditis #ComplexRegionalPainSyndrome #IntracranialHypertension

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

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

#RareDisease #MitochondrialDisease #sjogrens #IrritableBowelSyndromeIBS #ChronicIllness #ChronicFatigueSyndrome #ChronicPain #HashimotosThyroiditis #HypothyroidismUnderactiveThyroidDisease #Gastroparesis #IdiopathicIntracranialHypertension #MultipleSclerosis

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

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