Primary Immunodeficiency

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Mercy New by Melanie R.

Mercy New by Melanie R.

As You wake me in the night,
to speak to me as I write,

brightness covers darkness,
Lord, we thank You for your light.

Each morning
mercy new,
the dawning break of day.

The bread was broken for us,
to restore Your Mighty Way!

Your returning day approaches,
guidance needed most-

Your light has seen us through it,
Our lampstand; Heavenly Host.

A lighted path before us;
Not lost,
You led the way.

Opened eyes;
burning bright…
we praise Your Holy Name.

Father in Heaven,
The light that guides and shows us the way. Thank you for kindling Your Light of purity and allowing Your divine burning light to be seen. Seen to light the way of our path, to shine our testimony in the midst of great heavy darkness the way The Light of Christ anointed our faith.
One spark lights an entire room. Your mercy is fresh and new each morning as The Light of The World. The Great and Mighty Lampstand of constant presence shining before this world! Your light shines above the darkest shadows and empowers us to have the strength to overcome, as you have overcome every work of darkness! Praise God! Your Holy Light pours wisdom and chases darkness out. Heaven let your light shine down on us! We thank you for bringing mercy, life, and light in each dawn of day.
In Jesus’ glorious name,
Amen.

Psalm 106:1
Praise The Lord! O give thanks for He is good! For His mercy endures forever.

1 Peter 2:10
Once you were not a people, but you are now the people of God,… which had had not obtained mercy, but now have obtained mercy.

The Way, The Truth, and Life!
Shine your light! Give Light!

#RareDisease #sjogrens #MitochondrialDisease #PrimaryImmunodeficiency #ChronicIllness #HypothyroidismUnderactiveThyroidDisease #PosturalOrthostaticTachycardiaSyndrome #ChronicInflammatoryDemyelinatingPolyneuropathy #Dysautonomia #InsideTheMighty #ChronicPain #RheumatoidArthritis

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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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Does managing your illness(es) feel like a full-time job?

I’ve got all my specialist appointments scheduled for the new year now that my deductible has hopefully been met. Time to start pursuing treatment plans, procedures, diagnoses, etc. It starts all over again. Back on the phone being a secretary. The trips to Atlanta are often extraneous too. It’s exhausting being chronically ill & there’s no paid leave or vacation time from it. I just wish I could escape it all somehow. It feels like everything falls on the patient. I’ve worked very hard organizing a team of Emory doctors so they’ll communicate with one another better over my care. It hasn’t been easy because I’m a uniquely “difficult” case due to my PI or primary immunodeficiency on top of everything else. I can’t just take biologics & steroids all the time because it lowers my ability to fight infections & I’m already prone to them. That’s why I receive monthly plasma infusions. It just makes pursuing my other rare diagnosis that much more difficult since I don’t produce my own antibodies. I need the official diagnoses so I can reapply for SSI again. It’s just so costly being this sick & disabled. I’m over it. How do you bear the burden of it all? I rely so much on my spouse & immediate family for support. I can’t even drive myself anymore. I want my independence & health back. Unfortunately, the older you get the more our immune systems get depleted. I’m determined to continue on fighting & advocating for myself. Thanks for having me in the Mighty community. It means a lot to have a place to come to that understands. #Spoonie #ChronicIllness #ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #RareDisease #Sarcoidosis #Arthritis #CommonVariableImmuneDeficiency #PTSD #MentalHealth #Anxiety #ObsessiveCompulsiveDisorder

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WISHING YOU A HAPPY ST. PATRICK’S DAY! ☘️

Be a lucky charm for the primary immunodeficiency community by donating plasma today! IMMUNE DEFICIENCY FOUNDATION #RareDisease #CommonVariableImmuneDeficiency

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Primary Immunodeficiencies (PI) are a group of more than 450 rare diseases.

An estimated 1 in 2,000 people are diagnosed with a primary immunodeficiency in the United States. This makes PI a #RareDisease . With PI, part of the body’s immune system is missing or doesn’t function.🦓 #RareDisease #ChronicIllness #CommonVariableImmuneDeficiency

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being chronically ill is a full time job.

I have been chronically ill my entire life. I don’t remember a time when I wasn’t battling some kind of infection. I was born with a rare disease known as primary immunodeficiency or PI for short. More specifically CVID or common variable immune deficiency which usually affects children. I wasn’t diagnose until the age of 28! I receive monthly plasma infusions of Gammagard through a chest port. It helps to maintain my IgG levels since I cannot produce my own antibodies. Basically it just means I’m prone to infections like pneumonia. #piawareness #Showyourstripes #zebrastrong #DonatePlasma #RareDisease #RareDiseaseMonth #InvisibleIllness

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After living with primary immunodeficiency, osteoarthritis, narcolepsy, asthma, gi issues incl malnutrition, and more for many years, ive met my match

I have been hsving severe skin issues, worsening lung and breathing issues, sudden renal hypertension and general high blood pressure and loss of function in my hands, and even sudden unexplained cardiac issues for just over 5 years now. And it has been an awful experience for the most part where doctors refuse ti believe how bad thjngs are and either im causing lots of the thing i experience myself, or saying its a new psychiatric condition i developed, a nurse this past week who has known me for a number of years was once again havjng a very hard time getting an iv in so i could havd my ivig treatment it seemed like the skin on my arms has become very thick and tough and my veins themselves are no linger very good and tend to really just disappear. This is not the heard these same things. But this nurse went a step further snd connected the dots with a bunch of other symtoms that have started over the past 5-6 years and the worsening and resistance to treatment of my asthma and muscle and joint issues, and asked me if anyone has thought of or mentioned testing to determine if i might actually be having symptoms of systemic scleroderma. I hadnt ever really heard about this condition, but suddenly dojng research about it this week i feel pretty certain thar when and if i can get an md to seriously listen and consider this posdibility, im going to end uo having a confirmation if this diagnosis. The way i have been treated as thjngs have progressed has come close to really breakjng me, especially cimbined with the severity of discomfort pain and disabiity that have progressed pretty significantly over these last years. But i am known as a miraculous survivor and people think im a really strong person. And somehow i have managed to get through these really difficult experiences over these last years abd still be a generally happy, optimistic person who works hard to make a difference in this world but as i have resd more and more medical articles and had somehow come to terms that this probably my dagnosis the progression i am likely tibexperience (and up to this point the progression of symtoms matches what is described with this disorder almost to the finest details) i feel relief that there kosy likely a medical explsnation for ehat ive been experiencing, but i also fe my will to continue trying to fight and live my life as i have always managed to somehow continue or return to doing, is quickly evaporating. My life has been an amazing and wonderful one i am so grateful for, but the degree of difficulty i have experienced also been very extremr and im tired, so tired and so traumatized by the way i have bedn trearmted as the symptoms have appeared and progressed, that i dont feel like have whats needed this time to call upon to give me the strength and determination to live my life and somehow make this experience havd some positive meaning for me and in the way i am who i am in this world. I have even through medical crisis after crisis when there has been strong indication this was the final straw for my body, and after many years of struggling to handle a life with bipolar and very severe complex trauma from so many years of so many different really horrible ongoing traumatic experiences i have been able to rise stronger and more grounded, happier and more able to share my gifts ghrough each of these things, but this time, when i am so close to reaching the age if 55 when i was never thought to medically have a chance of survival even as a newborn, i have done all i have the strength to do in trrms of being resilient and fighting for what i have always felt so impirtant and my entire reason i exist, and its not that i want to die ir anything, but i literally sont feel i have what i need to possibly keep putting one foot in front of the other and being as present in each moment as possible and taking life moment by moment and all i can imagine is staying in my warm bed cuddling my very spevcial and sweet kitty and chatting with absolute soulmate if a best friend who lives thousands of miles from me and just not pushing function and have a life beyond thise three things from here forward. I cant see how i will ever be capsble of one foot after the other moving through this difficulty for however much longer i am blessed with this existence and fighting to continue. So please light a candle in the dark, say a whispered prayer and or send me all the loving kindness you can when you read this. Thanks
#Scleroderma

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Nocturnal Light by Melanie R. #ChronicIllness #ChronicPain #MitochondrialDisease #IrritableBowelSyndromeIBS #CheerMeOn #MoreDiseases #InsideTheMighty

Nocturnal Light

I was the school spelling bee champion in my 8th grade class. I can remember the ambivalence of walking up to the microphone; looking out into the crowd. Only squinting above the sea of silhouettes, as the stage lights were blinding.
It was down to myself, and one student.
The assembly room was silent except for my quivering nerves, and best classmates whispering cheers in the front row.
Nocturnal was my winning word!
Nocturnal?…meaning darkness?
Confusion…? How was this my word?
It would all become crystal clear, and quite a life theme through the pitch black reality of chronic pain/rare chronic illness.
A weighted stone tossed off the cliff in the nocturnal abyss which is actuality of chronic pain/illness. Splash! It will never reach the bottom.

My prize for winning the spelling bee?
A dictionary. A book of words and meaning. A gift of words!

“Nocturnal…N-o-c-t-u-r-n-a-l”…
A holy transformation from nocturnal darkness into His everlasting light.

It was Heavenly Father foreshadowing my predestination, and ultimate full spiritual restoration. I would persevere nocturnal darkness enduring chronic pain; but I would indeed find true meaning in His Holy Book.
Many eyes, on earth, and in the heavens; witnessing my true living testament for which I have become very thankful for!
My true reward and fulfillment of light!
Receive The Light Jesus came to bring for all of us! All praises to The Most High illuminating our way!

The sharpest pain
will overcome;
The darkest night,
The Rising Son.

Strewn bright across
nocturnal nights,
A torching dawn
of glowing Might!

He brought me forth across the stage,
and spelled it out,
a glorious praise!

Job 12:22
He uncovers the deep out of the darkness, and brings deep darkness to light.

John 8:12
Again, Jesus spoke to them, saying, “I am the light of the world., Whoever follows me, will not walk in darkness, but will have the light of life.
Psalm 112:4
Light dawns in the darkness for the upright; He is glorious, merciful and right.

#ChronicPain #ChronicIllness #InsideTheMighty #RheumatoidArthritis #MightyPoets #MightyTogether #ChronicInflammatoryDemyelinatingPolyneuropathy #Dysautonomia #PrimaryImmunodeficiency

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