Peripheral Neuropathy

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Whoa I’m On Fire!

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

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That I Burn by Melanie R.

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

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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

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Hi, intro post

I am new here. I am 71, male, in Missouri. Welcome to me. :) I have farmed for about 30 years, and cleaned houses for a living. I have Peripheral Neuropathy causes chronic pain 24/7. I spend most of time managing it. I have terrible flares twice a day, after I have slept. ( nap in the day ). Now I have microscopic colitis. It is a mess sometimes. Other wise I am a happy person.

I tried to commit suicide last year over the pain. I don't know how I have survived until now, but life is still happening. I need others who are dealing with their own situation to share in this very weird, and painful life. Hopefully I will get to talk with several of you as time goes by.

I'm an open book, when I am not closed. :)

Welcome

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Feeling broken? Only seeing your flaws? Sometimes those things we feel are flaws are actually what makes us unique, special and extraordinary!

I can get caught in that awful loop of beating myself up, only seeing my flaws, only recognizing things I haven’t done instead of giving myself credit for things I have done, getting stuck in self judgment, only seeming to hear my inner critic’s voice, I can lose all my self confidence, let my self esteem dip and things can look pretty bleak.

Over time more and more I have been able to catch this in the moment, pause, breathe, re-set, and then be gentle with myself and allow myself to shift my energy. I can then take first steps towards better self care…and reverse that repetitive loop, replace it with self respect and start to believe in myself! One situation at a time, I’m getting better … and every time I succeed it can get a little easier the next time. I can see that I have grown along my path and although it can be very hard for me to accept, there is unique beauty to the journey I have been on. I am not broken - I am strong - I have been accepting my flaws and see that as I have picked myself up over and over I have filled myself with gold!

~~~~~~~~~~~~~~~~~~~~~~~~~~

I find doing a gratitude list can help. A while back it was recommended I process a gratitude list every morning. I like to think of my blessings: roof over my head and food on the table; a car that runs and being able to afford insurance & gas for it; MY HEALTH…here I go through all my 5 senses thankful they all work, touch and feel my legs that didn’t at one point and give thanks that parts of me are healing but by bit ! I give thanks for my whole support network: great doctors & health providers, my friends, and my family!!! I find after doing this I start off the day feeling much better about myself!

What is on your gratitude list?

#MentalHealth #Depression #Anxiety #SocialAnxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #BipolarDepression #COVID19 #Parkinsonism #Concussion #BrainInjury #Migraine #Headache #BackPain #neckpain #PhysicalTherapy #HIVAIDS #PTSD #Stigma #PeripheralNeuropathy #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe

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The holiday season is upon us…does it make you feel joyful and happy? Or does it make you sad and depressed? It stirs up a lot for me….how about you?

Are you really looking forward to seeing family and friends? or Do you dread being alone? Do you love hearing Christmas songs on the radio or at the mall? or Do you just wish it would be 2024 already? For me it makes me feel a mixture of these…each year I go down to see my mom and family for Chanukah which created social anxiety for me this year but eventually I settled in and enjoyed the company and connections which was nice, then since I came back home at times I have felt sad, lonely and isolated! I celebrated Hanukkah weeks ago and In the past I have felt like so many others are being festive and celebrating Christmas with a decorated house, sparkling tree, and presents for all…without me …especially when I was younger! What are you looking forward to doing this weekend? I send you all blessings for a festive, joyful and special time!

#ChronicPain #ChronicIllness #physicalpain #PeripheralNeuropathy #BackPain #Migraine #Headache #COVID19 #covidlonghaul #Disability #MentalHealth #Anxiety #Depression #BipolarDisorder #Bipolar1 #Bipolar2 #BipolarDepression #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #PTSD #PainAcceptance #Acceptance #Happiness #Selflove #Selfcare #MightyMinute #MightyTogether #IfYouFeelHopeless #Hope #MentalHealthHero

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A Serving of Slay (in Pain) #ChronicIllness #ChronicPain #MitochondrialDisease #IrritableBowelSyndromeIBS #sjogrens #ChronicFatigue #MightyPoets #CheckInWithMe

Living yet dying,
in pain though I’m healed.
Poured on anointing
Through Jesus,
I’m sealed.

Unprofitable and plenty,
Refreshing not starving,
Receiving and waiting,
A sculpting, His carving.

Abased and abound,
filled-
not hungry.

The cave with the stone,
rolled-
found empty.

My Lord on the throne-
I serve…
so humbly.

I’m living through Him,
Slung Stones-
no stumbling.

The Lion, the Lamb

My name on His hand,

Waters were stilled-

My giants are killed!

Philippians 4:12–13
I know how to be abased and abound, everywhere and in all things I have learned both to be full and hungry; both to abound and suffer; I can do all things through Christ that strengthens me.

When praying in pain you actually slay in His name! Outwardly we waste away, but our spirit can be filled of renewal. As created spiritual beings connected to a source of goodness, prayer is our spiritual nourishing we incessantly crave, and we can completely align to.
Our faith strengthens, stretching wider than sweatpants after a feast; just as our appetite increases to turn to The One that truly understands living through chronic pain and immense suffering!
Stay strong Mighty Warriors and hold the heads of your giants! David only needed one stone! Praying is slaying in pain! Intake of this knowledge, and you will never know hunger or thirst again!
Thank you Jesus for this strength! Many prayers, and God bless and be with you all!

#MitochondrialDisease #SjogrensSyndrome #PosturalOrthostaticTachycardiaSyndrome #RheumatoidArthritis #ChronicIllness #PeripheralNeuropathy #ChronicPain

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How do you decide when to push through challenges like pain, discomfort & fatigue? OR when to listen to your body, slow down, rest, or call it a day?

Being uncomfortable and uncertain have been challenges I have faced very regularly in my life, and I have dealt with so many times that were “hard”, full of pain, made me anxious or angry, wore me down, and tested my fortitude & resilience. I used to always fight and push through these obstacles and challenges every day facing things head on. I was stubborn, determined to keep going no matter what…and I got a lot done, stayed busy and proved to myself I wasn’t a quitter and could accomplish anything I put my mind to. I certainly did grow in many ways and find out a lot about myself and what I was capable of doing, and gained confidence and learned to feel comfortable with adversity…

…Yet I did so without realizing I was pushing my body to its limit and maxing myself out! I wouldn’t pay attention when my back was screaming to be rested, my neuropathy in my legs and feet burned so much and they begged to be kicked up & treated, and/or when I had a blistering migraine that made me so sensitive to light, sound & movement, and completely drained my energy. I still pushed through.

Then something happened … I don’t remember who it was or what they said, but I had a light bulb go off, an epiphany of sorts. It changed my thinking and how I have chosen to function since then. I realized I don’t have to always be strong, determined and push myself so hard just to prove (to myself) that I am willing and able to get things done.

I can just pause for a moment, breath, and do a little personal inventory to see how parts of my body are really feeling, then if they are telling me to stop I have learned to be gentle with myself and take a break, not feel like I have to do everything on my ToDo list that day. Then I almost always find that I can just call it a day…. I can table everything left on my list til the next day or two, and my world won’t come crashing down. I have learned that I am almost always the one putting all the pressure on myself, I am the one who sets unrealistic goals, I am the one that doesn’t want to admit to myself that I have numerous challenges that require regular care and that I have limitations of what my body can do.

I am disabled and that’s ok. It’s ok to not be 100%, It’s ok to need to use a cane, It’s ok that I get brain fog & stutter, it’s ok that I have to wear obnoxiously big migraine glasses in public, it’s ok to need to use handicap parking spaces…and it’s ok if some days I don’t complete everything on my list, and instead choose to be mindful that I’m tired and pushing through would make it worse.

————————-

Yet, some days I’m tired but I still want to go on the daily walk my Physical Therapist has finally cleared me to go on, I still want to finish a project in my kitchen, join my family for a big dinner, or go to the men’s group meetings I have missed for a long while. Then sometimes I still push it and do them, but only if first I can honestly tell myself it’s not too much and that I will also choose to stay mindful along the way and just stop when it’s time to stop!

For me it’s about balance, acceptance and practicing good self care! A lifelong journey…one challenge at a time!

What have you learned about your body? Can you step back, scan yourself and let yourself rest if necessary? Please be gentle with yourselves … dealing with multiple health challenges can be tough enough, I’ve learned that my stubbornness and pride have often made things worse!

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #HIVAIDS #PeripheralNeuropathy #BackPain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #DistractMe #MightyTogether #conqueryourmind

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Being fully aware that I cannot be defined by much of anything, Neuropathy is definitely taking its’ toll on me this morning. #PeripheralNeuropathy #Weather

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