Autoimmune Immunodeficiency

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still no answers

I've been like this for nearly 2 weeks this time. my vision is just blurred. it burns and itches. but more so it's painful and I'm scared. . . idk if it's the vanity I have left or the chronic anxiety about leaving home, but I just hide inside. I can't see anyway, and don't have anyone here where I live to help. I've had an ad on fb for weeks needing some minor maintenance done. of course I offer pay.
I can't keep feeling so alone. I'm scared ill go blind. I'm scared I won't make it without some help. I'm scared of how I feel and the dark thoughts that come when the pain is most high or when I call out and the silence reminds me that no one is there. #StevensJohnsonSyndrome #AutoimmuneImmunodeficiency #ChronicPain

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The Shepherdess Keeps Watch By Melanie R.

The Shepherdess Keeps Watch
By Melanie R.

In darkness deep and shadows cold;
shepherdess stands, brave and bold.
A chosen instrument of the Lord,
strengthened,
guided
by His Holy Word.
Thought of like David, last, but not least.
With strength and courage;
Power to teach.

A guardian now,
for His flock;
for His kin.
Holy Spirit’s light flowing from within!

Faithful prayer and intercession,
She’s trained for this intention:
To watch and care,..
trust His way
The Lord's own sheep…
His legacy.

Filled with Spirit’s Holy Might.
Covers in darkness;
Covers the night.
The shepherdess keeps watch-

No enemy gets by.

For like a shepherd,
God is near,
To lead us to pastures green,
calm waters clear-
He carries us in His loving arms,
Protecting-
keeping His sheep from harm.

Isaiah 40:11
He will feed His flock like a shepherd.
He will gather His lambs with His arms;
And carry them in His bosom.

John 10:11-12
I am The Good Shepherd!
The Good Shepherd lays down
His life for His Sheep.

#MightyPoets #MitochondrialDisease #SjogrensSyndrome #AutoimmuneImmunodeficiency #ChronicIllness #ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain

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Holy Mountain by Melanie R.

Holy Mountain by Melanie R.

I looked to the hills
where great mountains stand.
For all of my help
is from God’s righteous hand.
They reach to the heavens as they do declare,
the signs of His wonder-
His glory, and care.

The height of His Majest….

My Rock,
cornerstone.
Atop there with Him,
I feel comfort-

I’m home.

The Rock that was thrown down,
rejected,
then rolled…ooh..ooh…

Now holds me together,
shows mysteries unknown.

Mt. Tabor’s prominence;
Mt. Carmel stood tall-
proving…
there’s One God that reigns over all!!

In His holy mountain,
with Him by my side,
in hearing His word,
growing faith,
I abide.

The gush of the water
that came from the stone,
Rained living water;
restoring me whole!

Thank You Jesus!

Isaiah 48:22
And they did not thirst
when He led them through the deserts.
He caused the water
to flow from the rock for them;
He also split the rock,
and the waters gushed out.

Stay Strong Mighty Warriors,
and God be with you all! 🙏💪🏻🏔️

#MightyPoets #InsideTheMighty #MitochondrialDisease #AutoimmuneImmunodeficiency #ComplexRegionalPainSyndrome #ChronicIllness #Dysautonomia #IrritableBowelSyndromeIBS #MultipleAutoimmuneSyndrome

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Incredible guiltTraumatizing my kids (19&21yo) I got toxic megacolon 3 wks ago, the drs saved my life w colectomy w ileostomy. I’m a single mom

Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.

#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #Colectomy

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My stem cell therapy for immune modulation and upcoming research that will improve it

Stem cell therapy is completely cost prohibitive in the USA, where I've been quoted treatments cost around $5000 dollars each from two different sources. I've been told by my CFIDS specialist that the treatment should be done every 3 months.

So I have a Christian holistic doctor with an MD educational background that amazingly offered me Chinese stem cell therapy at her cost, which was quite cheap since she had it shipped over with an order combined from a total of 3 doctors. I started it just over 2 months ago. I have autoimmune thyroiditis and immune deficiency. What I can tell you is that I felt a decrease in pain in my neck, where I have the most pain, but the effect was strongest right after I got the shot in both elbows, and it doesn't completely remove the pain. I still have to do my neck exercises and stretches and get adjusted by a chiropractor every three weeks so it doesn't become too painful for me and turn into headaches. I didn't notice an effect on my energy levels, but I got COVID-19 four or five weeks after the treatment, which hasn't helped me determine the results very well.

My doctor also has access to placenta stem cell therapy, which I would have preferred, but she wanted to try Chinese stem cell therapy on me first.

Thanks to keepontruckin at phoenixrising.me for showing us even better news on the current research for improvement on stem cell therapy for autoimmune treatment at Mayo Clinic here Scientists pioneer immunotherapy technique for autoimmune diseases

Will this new modified treatment turn out to be a less expensive option?

To understand the differences between Chinese and placenta stem cell therapy, here is an article entitled Development and regulation of stem cell‐based therapies in China and another article entitled Placental-derived stem cells: Culture, differentiation and challenges

#ChronicFatigueSyndrome #MyalgicEncephalomyelitis #AutoimmuneImmunodeficiency #HashimotosThyroiditis

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Development and regulation of stem cell‐based therapies in China

Clinical researches of stem cell‐based therapies are highly active in China, while it was arduous to determine the most effective way of clinical translation of those advanced therapies.This article briefly introduced the regulatory framework ...
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Have you had the Novavax vaccination and has it prevented Long COVID?

So I got COVID-19 for the second time just over 2 weeks ago, and am unvaccinated. I have increased fatigue from the first time I got it more than 2 years ago, which has left me unable to work, whereas previously, with lots of treatment, I decreased my fatigue enough to work part-time.

I have CFIDS with immune defiicency and autoimmune thyroiditis. So I can't take any vaccinations using an autoimmune delivery system, which leaves only Novavax.

The only reason I would be interested in taking Novavax is to prevent Long Covid to try to get working again, since I have strong lungs and don't end up in the hospital with COVID-19. I am still trying new treatments for my immune system.

So have you taken Novavax, and if so, what was your response to COVID-19 after taking it? Are you immune deficient?

Thanks so much for responding to this. If you wish to speak more privately instead of posting here, please don't hesitate to message me.

#ChronicFatigueSyndrome #MyalgicEncephalomyelitis #HashimotosThyroiditis #AutoimmuneImmunodeficiency #COVID19 #longcovid

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This Little Piggie Went to the Doctor #AutoimmuneImmunodeficiency #Anxiety #Depression

Had my big toenails and 3rd toenail on left foot, 4th on right removed the 23rd due to chronic ingrown toenails and infection. They had been hurting more and just not healing right, having discharge that was not pretty. I had this going on for a few days, kinda ignored it in hopes wound care alone would take care of it. Well I finally broke down and went to urgent care. All 4 especially the big toes are highly infected and spreading towards the ball of my feet. After a scolding from the PA and me sweet talking him, we are going to try treating this outpatient. I really don't want to go in hospital. Well now I feel like crap physically and mentally cause I waited. I feel guilty for ignoring the signs, and just plain ol tired.

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

Chronic Pain by Melanie R.

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

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

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…
Tormented.
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 #ComplexRegionalPainSyndrome #MightyTogether #BackPain #RheumatoidArthritis #MightyPoets #ChronicPain #MitochondrialDisease #Disability #ChronicPain #ChronicInflammatoryDemyelinatingPolyneuropathy #Gastroparesis #RareDisease

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