Dysautonomia

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A Heart Set Free by Melanie R.

A Heart Set Free by Melanie R.

A great winded rhythm underway; 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 poufs 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 and the intricate design of each ticking; of each pulsed beat transformed by this undeniable salvation.

Echoed chambers of my heart.

Centered rhythm deepest part.

Search me, Lord, and see I’m true-

slated clean-each beat for you.

Five waves count each beat’s refrain, monitored life both joy and pain.
Set each P, Q, R, S, T…
My heart declares my love for thee.

And if one day my chambers still,
my heart set free-
fulfilled Your Will.

Psalm 139:23
Search me Oh God, and know my heart.

Matthew 6:21
For where your treasure is, there your heart will be.

Proverbs 3:5
Trust in The Lord with all your heart, and lean not unto thine own understanding.

The Lord searches the heart.
Give God your whole heart. Stay strong Mighty Warriors!

#ChronicIllness #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #Cardiomyopathy #RareDisease #ChronicPain #InsideTheMighty #PrimaryImmunodeficiency #ChronicInflammatoryDemyelinatingPolyneuropathy #RheumatoidArthritis #HypothyroidismUnderactiveThyroidDisease

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Float by Melanie R.

Float by Melanie R.

Punctured balloon.

Slowly dies.

Floats.

Aimless.

Half-filled.

Exiled.

Rubber thinned.

Knotted end.

Static- hair life.

Stretched.

Detached.

Deflated.

Breath of God.

Flowed.

Infused.

Contained within.

Reacted.

Patched Holes.

Renewed purpose.

Refilled life.

Carried on-high.

Rippled rejuvenation.

Exodus.

Faith message.

Proclaimed.

Rings on-high.

Reaches Heavens.

Rejoice!

Thank you Jesus for allowing this journey of floating on grace through rare chronic illness/chronic pain and all of its complexities. Let us all continue to float on in Your mighty strength and purpose!

Isaiah 40:9
You who bring good news to Zion, go up on a high mountain. You who bring good news to Jerusalem, lift up your voice with a shout, lift it up, do not be afraid; say to the towns of Judah, 'Here is your God!

Psalm 68:11
The Lord gave the word; great was the company of those who proclaimed it.

Luke 19:37-38
And when he was come nigh, even now at the descent of the mount of Olives, the whole multitude of the disciples began to rejoice and praise God with a loud voice for all the mighty works that they had seen; Saying, Blessed be the King that cometh in the name of the Lord: peace in heaven, and glory in the highest.

Acts 1:8
But you will receive power when the Holy Spirit comes on you; and you will be my witnesses in Jerusalem, and in all Judea and Samaria, and to the ends of the earth.

#RareDisease #MitochondrialDisease #SjogrensSyndrome #ChronicIllness
#ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain #IrritableBowelSyndromeIBS #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #Endometriosis #HypothyroidismUnderactiveThyroidDisease

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PEG-J Predicament

I'm an EDS patient, and I not-so-recently got the diagnosis of severe gastroparesis with no stomach function. I have been admitted to hospital and got a NJ Tiger tube and a PICC placed for parenteral & enteral nutrition (I also have intestinal dysmotility). My doctors are opting for PEG-J tube placement, but I just can't get over the idea of this going way too fast. Also, I am not doing very well with the enteral feeding, and my doctors are trying to decide between home long-term TPN or me becoming a long term patient.. :( For this reason I'm thinking of starting a blog to share all my experience of having EDS as a teenager! Should I, or should I not? #ChronicIllness #MyCondition #EhlersDanlosSyndrome #Gastroparesis #AskMe #Dysautonomia

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Stomach pain

Does anyone here have an almost daily painful bloated belly that comes on and lasts between an hour and all day ? I have been attributing it to dysautonomia. If that is the case, I don’t understand the mechanics of that. I was wondering if I should go see a gastroenterologist, but I don’t think there’s anything wrong with my stomach.. but I don’t have a magic ball either? Any ideas or experiences?

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Hitting a wall.

How many of you have had to quit school due to chronic health problems?

WARNING ⚠️ the rest of this post is lengthy!!!

I have been working on my bachelors in community health through online courses (one class at a time) for the past seven years. A few months prior to beginning my degree program I was diagnosed with fibromyalgia following a car wreck that required a neck fusion surgery. From there my chronic illness diagnoses have continued to accumulate. I now have chronic migraine, endometriosis, interstitial cystitis, chronic fatigue, degenerative disc disease, tinnitus, IBS, C-PTSD, and a long list of food and environmental allergies. I have 2 sons and 2 daughters. My youngest son (15yr) has serious ADHD. Both of my daughters (21yr & 20yr) have long lists of chronic health conditions. They live with me and probably will for their whole lives due to the impact of the disability that their issues cause. Neither girl can drive either. The oldest has Asperger’s, fibromyalgia, Ehlers Danlos, ADHD, C-PTSD, severe anxiety, depression, Eosinophilic Esophagitis, IBS, mild Ulcerative Colitis, numerous food allergies and possible Borderline Personality Disorder. The youngest has Chronic Fatigue Syndrome, Dysautonomia, C-PTSD, depression, anxiety, disordered eating, restless legs, Eosinophilic Esophagitis, constant skin picking, and numerous food allergies. All three of us girls and my youngest boy has severe sleeping problems. Me and both my girls have applied for and been turned down for disability. Up until 2022 I had been a stay-at-home, homeschooling mom. At the beginning of 2022 me and my 2 girls and youngest son ( oldest son is in college and pretty much living on his own) loaded up and left my narcissistic abusive husband of 16 yrs. and began to start over in a tiny apartment in a small town with me re-entering the work force and starting a full time job in retail and officially divorcing him at the end of that year. My youngest daughter has since tried to commit suicide twice and my oldest has had several mental breaks that were extremely hard to deal with. Throughout the whole time I have continued with my school classes. Determined to finish what I started. However, my health has continued to decline from all my illnesses and the stress of my life and it is taking a toll on my cognitive abilities. I took a 8 month break from my classes but have started back recently and I’m struggling to keep up with the assignments and not learning as I know I should be. I only have 6 classes left, that will take me the next year to complete due to the schedule I’m following, but my body, mind and finances seem to be making it extremely hard for me to keep going. I’m really considering quitting, but feel like I would be a real failure if I didn’t finish it.
If you read all this……Thank you! 🙂 #ChronicFatigue
#Fibromyalgia
# Migraine
#IBS
#InterstitialCystitis
#ChronicPain
#EhlersDanlos
#c -PTSD
#Autism
#Anxiety
#Depression
##BrainFog

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Blind Faith by Melanie R.

Blind Faith by Melanie R.

Like a moth to a flaming light, let us draw close to the,“Everlasting Light”, (Isaiah 60:19-20)

Faith is the blind trusting in God, and His promises to endure in all of our difficult circumstances.

As followers of the light, we can find awe and wonder in the North American Io silkworm. The io moth lifecycle inspires, and has parallels to our spiritual rebirth, because they are also formed as eggs, hatched in growth, and are cocooned/preserved to emerge in rebirth by true renewal of faith!

Trusting God’s lighted guidance and spiritual senses through the darkness; to see beyond what’s physically visible kindling our own illuminated insight.

We are asked to walk by faith and not by sight (2 Corinthians 5:7), and the blind io moth relies on the moonlight to guide them on their nocturnal quest.
Although their blindness is a limitation, their attracting yellow vibrancy, and keen sense of smell can be viewed as a guiding wisdom in their luggage/arsonal to carry, and less of a baggage/burden of flight.

A weightless freedom led to a destination of endless hope and safety….a transcending peace, love, and comforting security.

As in the beginning, in the dirt of darkness,…even as pain lurks in the shadows, a flickering distant lantern light calls for transformation!

Psalm 119:105
Your word is a lamp to my feet, and a light to my path.

A spiritual metamorphosis and rebirth in Christ.

The male io silk worm spreads it wings to reveal it’s “ocelli” or eyes, which are kept hidden and surprisingly then it’s fragile fanned wings open to reveal its beauty! As it has experienced permanent restored change and will never be the same.
As we also open our hidden spirit eyes Christ is revealed to us through this uncovering which ultimately sets us free to take flight; soaring above on the wings of full trust.

Proverbs 16:20
Whoever gives thought to the word will discover good, and blessed is he who trusts in The Lord.

1 Peter 1:8-9
Though you have not seen Him, you love Him. Though you do not see Him now, you believe in Him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.

God be with you all on this journey of discovery and unveiling! Open your spirit eyes and be open to receive a transformative experience through the light of Christ! I pray you all take flight and fulfill your true purpose in pain/disability.
Through faith, we are partaking in the redemptive power of a profound rebirth in purpose to fulfill God‘s plan in destiny.
No longer defined by rare disease, pain, and frustration; but as an heir and testament to God’s promise of faithfulness to those that suffer.
Sackcloth to garments of righteousness under our armour for the Lord’s splendor. Clothed in grace and mercy, and the healing anointed favor of the spoken Word. This faith protects and prepares us to take flight!

#ChronicIllness #ChronicInflammatoryDemyelinatingPolyneuropathy #MitochondrialDisease #ChronicPain #RareDisease #IrritableBowelSyndromeIBS #Dysautonomia #SjogrensSyndrome #InsideTheMighty #RheumatoidArthritis #MightyPoets #MightyPoets

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Tips for Traveling?

Hello! I was wondering if anyone has any helpful tips for traveling with POTS? Specifically if there's anything I should do to prevent/alleviate symptoms while flying. I also was hoping for some advice on managing symptoms in hot, humid weather.

I am taking a mini vacation to visit some family in Florida. The weather is supposed to be in the mid-90s while I'm there, and I'm worried I might actually melt. I'm also scared I'll have issues on the plane. I've only flown a couple of times before. This will be a solo trip and I want to be as prepared as possible so I don't have to rely on the kindness of strangers if I begin to feel unwell.

#PosturalOrthostaticTachycardiaSyndrome #POTS #Dysautonomia

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