Mitochondrial Disease

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I'm new here!

Hi, my name is PonyGirl. I'm here because I am an intermittent wheelchair user. I am frustrated by the harassment I've endured from the leader of a professional group who saw me walk a short distance. This went on for years, and after a phone call during which they insisted "You are FINE! There is NOTHING wrong with you!" I left the group. I have been treated like a pariah by other group members since that time. I need to find a new tribe that understands fluctuating symptoms.

#MightyTogether #MitochondrialDisease

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Stages #ChronicIllness #RareDisease #MitochondrialDisease #ChronicPain #Disability

Smoldered and burnt down
was her body for so long;
after what she had been through,
only ashes remained.
Falling ashes a-blowing
all her life never knowing,
if all she had dreamed of,
for so long-
could’ve been.
But He built her through stages,
found resiliance, unlocked cages-
Jesus brought her the love
that she needed that day.
Although fragile and withered
God lighted her way…
and built beauty for ashes,
as she took center stage…
bringing beauty for ashes,
healed her heart through the pain.
(2nd verse)
Like beauty for ashes
charred embers astrued,
God cupped all the scattered
and made something new.
Just like He promised
He said that He could,
built something inside me
not made of metal or wood.
I was built from the ashes
no hammer to slam,
my foundation stands strong,
not sinking in sand.
Jesus my craftsman
knew just what to do,
when building my stages
Sweet Melody of truth-
HE built beauty for ashes…
my forever with you!

Although I had the opportunity to sing on many stages, God set the stage for me to sing about my rare chronic illness experience and has been instrumental in every aspect.
I was built for this stage, in this stage of life!All of my inner creaky boards and rusty corner latches have been prepared, and the band has been tuned up for this most harmonic song!
The stage is set and was fastened by the nails in your hands, so that your voice is amplified and reaches the suffering through this humbled spotlight. Allow us all to sing your praises like the heavens glorify your name!

Sing!!You have the master builder creating your stage with spiritual power tools! This is a pivotal stage in your life! Keep praying to endure and make a joyful sound from your long-suffering!! God bless and be with you!

Song/poem/story by Melanie R.

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I Got the Job! #ChronicIllness #ChronicPain #RareDisease #MitochondrialDisease #HypothyroidismUnderactiveThyroidDisease #sjogrens

Do you believe a person’s value is based upon what they can achieve, produce, and provide in their work life? Is a person’s worth defined by their success, prosperity, or boomerang-like,”you get what you give” mentality in this lot in life?
Through asking these kinds of questions,
I got the job! I wasn’t qualified, but I was chosen from many polished candidates due to willingness to follow and learn through my hands-on experience. This full time position requires 24/7 on-call availability, and was given without an application, interview, or consultation by me. The training is continuous, arduous, and there are no scheduled breaks, sick days, or vacation time in the contract, but it does have potential to help many in life changing ways through the job experience.
Would you like to work here?
Do you work here too?
Too late. My time card was punched like my stomach pains. My jaw remained clenched to smile through the pain and nausea to get started.
What a welcome to the Department of Physical Suffering and Loss. My new job title was Rare Chronic Illness, and my shiny gold name plate read:
Melanie Rodriguez, Secretary of Long-Suffering or S.O.L.S. Agent.

Romans 8:28
And we know that in all things, God works for the good of those who love HIM, who have been called according to his purpose.

It seemed like forever that I slave labored through a job I despised with no tangible benefits, advancement, pay raise, or feeling of accomplishment. This unwanted unpaid internship only provided a week end paycheck of hopelessness and gutteral desperation for answers that only sunk me deeper into despairing the painful daily grind.
I had just started to feel life was falling into place when my physical health rapidly declined. Every aspect then felt scattered, yet isolating. It was a cruel game of symptom containment that I never could triumph mastering.
Even after years of critical training in multiple surgeries and quality controlled diagnosis gathering, the disability trajectories sky rocketed. The crash of exhaustion and the lack of energy to persevere were no contender to overlapping symptoms and indescribable pain. It all became unmanageable, and yes, I was called for review…more than once.
I was enept at best.
My professional laser focus was unbalanced in a prematurely failing body. The two often collided creating a powdery stardust of feeling complete overwhelmed while struggling in my own body. I was unable to physically move, so how could I keep pushing myself in a,”no excuses, can’t give up now” office environment? The inevitable was complete collapse!
The cycles of relentless physical pain, flare, guilt, shame, and loss left me bedridden at times, unable to care for myself, or others properly in only my mid 30’s, with three children that needed their mom. Not for a lack of trying, or dedication to the idea of hope, and reclaiming my once vibrant life, but the actual physiological ability to.
The tears burned down only making the pain worse.
How could I endure working like this?
I wasn’t a good fit for this job. I really, really wanted to quit and find a different job, but there weren’t any other openings.
This prestigious position of rare chronic illness took years to learn to cope through, and when things were hectic as hell, I petitioned the help from a kind friend and coworker from the very top floor.
He understood my limitations perfectly which comforted me. He walked, guided, and encouraged me to succeed on my work path. I gained so much valuable insight through Him. An education that truly saved me!
Even so, I still felt ill equipped to complete the compiling workload and I requested a meeting with corporate pertaining to my job description and skillset utilization.
My Boss gave me a handbook to read which outlined helpful instructions to which I still refer to daily.
My Boss is Great and Mighty! HE mentioned HIS door is always open, to just knock, and that I could enter. He also said I could always find HIM!

Jeremiah 29:13
You will seek me and find me when you seek me with all your heart.

Chronic illness/chronic pain may not have been your first career, but trust that The Boss has purpose for your suffering. Be faithful and work to your full potential serving The Boss with hopes that the day of deliverance is near.

Psalms 34:19
Many are the afflictions of the righteous, but the Lord delivers them from them all.

It was only through the support of my team, daily surrender, and complete trust, did I then feel I had the tools and readiness to take it all on; and truly believe this position was made especially for me. We have the essentials spiritually, even if not physically to complete our tasks. Embrace your limitations to fulfill your true work and purpose of life. Goodness will come from the hard work in conjunction with His plan for your life on earth and eternally.

Colossians 3:23
Whatever you do, work at it with all your heart, as if working for the LORD.

Keep Working! It’s not in vain!
He gets the praises for your raises!
Thank you Lord, I trust you!

*Published Written Piece by:
Melanie Rodriguez/Patient & Advocate

6 reactions 1 comment

I'm New Here

Hi! My name is Abby Bohannon. I live in New Hampshire. I am a medically complex young adult. I am 21 years old.

I do a lot of neurodiversity/disability advocacy work with a non-profit organization in my area.#MightyTogether #MitochondrialDisease #ChronicIllness #ChronicFatigue #Epilepsy #ADHD #Advocacy ##

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Changed the name of the group

Hello friends! You will notice I change the name of the group, even though the purpose of the group has not changed, I want to focus on the journey and not the destination.

This summer, I really want to continue my outdoor adventures and have as much time as I can with the people I love. What are your summer goals?

#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine
#CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
#RaynaudsDisease #MentalHealth
#ChronicIllness #Disability #DistractMe

43 reactions 22 comments

I'm new here!

Hi, my name is rhona1. I'm here because I want to spread awareness of hidden, genetic diseases and support others who have been on the long, difficult road to diagnosis.

#MightyTogether #MitochondrialDisease

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Let’s engage our senses! Use your senses to describe your most relaxing spot.

I can smell the green of the grass and trees.
I can feel the last bit of the warm sun on my face and the slight breeze.
I can taste the cool water on my lips.
I can feel the twigs snap under my shoes.
I can see the beauty of nature all around me.
I can hear the birds chirping and honking.

#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine
#CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
#raynauds #MentalHealth
#ChronicIllness #Disability #DistractMe

19 reactions 9 comments