Primary Immunodeficiency

Create a new post for topic
Join the Conversation on
Primary Immunodeficiency
1.4K people
0 stories
146 posts
About Primary Immunodeficiency Show topic details
Explore Our Newsletters
What's New in Primary Immunodeficiency
All
Stories
Posts
Videos
Latest
Trending
Post

Not able to do this anymore. Help w your thoughts pls

I have spent more than the last 5 years trying in every way i could to get the medical system and my community mental health providers to see/be willing to see that i had some kind if parasite attacking me. From convo 1 i was tokd kim you have bipolar 1 (and complex trauma) and this is psychosis nothing does what you are describing. Many times i have thought the visible evidence was enough that finally being literally treated in abusive manners for wanting help was going to be done because thjngs were so clear, only to find er drs and acute care providers etc who wont even let me tell them whst has promoted me to do things like sit (as partiently as possibke—- and w my myriad if medical disabilities most importantky a primary immunodeficiency, i have spent lots of time in hospitals), all night to be seeen in ER for the situation only to have what hapoened 2 1/2 weeks ago and again yesterday (monday morning) happen. The dr wont even let me tell or show them anything, 2 1/2 weeks ago literally saying that this is a psychosis and im discharging you and be unwilling to talk or interact any further, or yesrerday when i had almost passed out was still having the room spin and feeling extremely shaky and weak — note low potasssiumnabd a significantly prolonged QTc (cardiac interval) had caused me to pass out and spend 6 days here and i hadnt been home 24 hours yet — and we very quickly discovered i am now covid positive.— the dr once again discharged me and i tried to say w my primary immunodeficiency and so forth and there is more medically and environmentally hapoening than i wanted to get into and she told me that “ you are being discharged andx thsr The ER is not the venue for this.” I know this sounds completely crazy but i am sitting here in the waiting room waiting for tgd bus to start runing (i guess anyway) because ibcame back 7 hoursblater havung chest pain and also beyond desperate but knowing opening my mouth woukd definitely not go well — esp as the nurses were disgusted at my return and laughing as tho i was completely stupid and completekh deaf despite fact that even with a good protective headcover on and a shirt that covers my full back snd neck , so much is falling or diving or whatever off my body that the stretcher sheet was visible startjn v to be coated and my purple shirt us more white than purple and anyone who stood near and looking at my and coukd see could hardly havd missed the things falling and moving, i was discharged before 2am and have sat here in a (very very unusually and strangely empty ) waiting room w no patients for 4 hours waiting for busee to. Start running or uber prices to stop surging all the while trying to figure oilutvwgat the hell to do now as my therapist and my pharmacumist best frirmds will telll you this is real and we have been talking about thd possibity that after 5 + years and as severe as the problem has clearly become kver this calrndsr year, even if everyyne did tgeir very vest snd everythjng tight this may now not be survivable medically, and after being ignored while i know they had to see this and after all the abuse and mistreatment and iver and ovdr againnripping the life i keep startibv to piece togetger to shreds when this once again flares (although fir almost a year it gas jyst gotten worse andxworse — no flares) i have been sitting heres truthfully wishing i was t so damn stubborn about my surviving (over and over in my life) and tgst i wass braver so i could just end this withb my life. But i am me and botg those thjbgs are cery real abdc true about me, and so i literally ding kniw what to do. I cannot ince again. Go hime snd continue as my apt is so contaminated i get 20 x worse inb15 min and my most special, wonderful loving little esa kitty is clearky suffering noth from what i have spread tk her abx throughout thd space and from my ibability to comfort snd be tgeee anx make it better, and i hust cant even walk onto the hallway again the guikt and grief themselves might kill me frankly, but i know telling anyone here i am psychiatrically jot ok now wont be taken as an honest and real statement being made bc i am trying to do what is right, and i also know in any situation that i need an ambulance tgey will bring me gere no matter what i want, and havjng never been in tge er heree w a psych issue this got me sent trightbti psych section of er upon presentation of mysekfcwhen whetger this partg isxreal oorcpsychosis or whatever in their minds, i was saying i wass medically unwell. And seek in v meducal help and tgey frew labsxand took everything from. Me and held me w no medical or mh care at all ivernight onky to wakr me the next morning and inform me i had been discharged by tge dr before shift change and his deparrture almost 4 hrexearlier snd i needed to leave — and they had drawn labsxtgst ifcthey had lokked at woukd have shown them meducal need such that the QTc andxpotassium issues weee alreadyvpresent abd they onky worsened befotd i was back almost a week later w a dangerously low bp and not okay and tgey enddd up habmcubg to admit and keep me and provide mrdical treatment, i am being treated worse w every interaction i have w anyone here bc of that psych er now being on the recordx rather than my diagnoeses and meds bring in my echart and so forth. I dont have funds to ubdr or lyft elsewhere even though many teaching hospitalx in the metro anx suburban area, plus i know showing up
Elsewhere now woukd nr seen as a reason to believe i am acting in wats that give them every rught to treat me w no dignity or respect etc, and on top of that i am beyond exhausted and not well and feeling so so unable tk go try to takr bus anywhere in so many leveks, but hust ad ms unwilling to tryto get any more care here. And while i have nk plans i honestly havd never felt despite my many very serious illnesses and my multiple really bad experiences that have contributed to complex trauma, felt less interestec i or willing to continue w life. Help w encouragement or thoughts but not dictates oc what i need to di please! Thx

Most common user reactions 4 reactions 3 comments
Post

Relationships & defeats where do we discuss that?

Hello, I’m new here and I’m dealing with some really rough relationship issues that I feel have a lot to do with my health. Where do people discuss these challenges on The Mighty? I will admit that tim struggling with the relationship and it’s a 10 year relationship and we love each other very deeply yeah I feel like my medical condition. Makes it too scary or risky for someone to take a chance to be with me based on the numerous systems have been affected by my systemic connected tissue and auto immune disorder. The person I was dating for 10 years that we’re about to be engaged is a physician had a kidney transplant and I think understood too well how much risk I’ve had recently with several near death medical crisis according to my present medical history, my trajectory is not going upward at all. In fact, my immune system has attack more organs systems and now I’m not a surgical candidate, major spinal deformity or hammertoe/bone spur injury.
Im still here. My bf broke up w me. We were supposed to get engaged shortly. Hard week. I think it’s too late I missed my chance. I was in a to me and my kids which took me 15 yr marriage that was destructive to me and my kids. It took me ten years to get a divorce. I’m still dealing with the fallout from that. Dating# #mixedconectivetissuedisease #PrimaryImmunodeficiency #DemyelinatingNeuropathies #MultipleSclerosis #CrohnsDisease #AutoimmuneDisorder
#Epilepsy #Arthritis #DegenerativeDiscDisease #ChronicFatigueSyndrome #Arthritis #DiffuseIdiopathicSkeletalHyperostosis #seronegativearthritis #Scleroderma #Endometriosis #Gastroparesis #ChronicVestibularMigraine #Migraine

Most common user reactions 8 reactions 1 comment
Post
See full photo

Super Seed by Melanie R.

Super Seed by Melanie R.

Past dunes,
bazaars of market spice
the planter fared for gift of life.
Past storms,
crossed marsh,
contended seas.
The search consumed to supersede.

The planter’s hope on path’s unknown.
Walked thorn in side o’er fiery coals.
A strength of Will,
a test of faith,
So worth the trek,
no time to waste.

So deep within the earth’s crevasse
Super seed was rare to find-
The planter brave to travel there.
lamp by feet to guide.

The quest consumed
as passion flared
Find super seed,
then plant with care.

Hidden by faith,
Blinded by source.
The planter prevailed;
sailed on to the course.

Traversed below the surface,
a suffocating search
Many were called before him,
and some have not returned.

Time went by as darkness pressed,
and time to sow was ticking;
the seed then found amidst the dead
a covenant seed of picking.

Planter knelt on all the darkness
and placed his hands in dirt,
Brought them both together
prayed through all the hurt.

Tilled soil with only finger
Aerated when in heart,
The neck of fate,
with open hand
Let go of all the hurt.

So on your quest,
remember this,
A remnant lost in fear.
Now plant your seed,
you’re alive again;
watered by the tears.

To this day you’ll find it,
full grown to supersede.
Flourishes beside hope’s gate,
the seed became a tree!

#MitochondrialDisease #PrimaryImmunodeficiency #IrritableBowelSyndromeIBS #RheumatoidArthritis #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #RareDisease #ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain

(edited)
Most common user reactions 1 reaction
Post
See full photo

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

(edited)
Most common user reactions 17 reactions 3 comments
Post
See full photo

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

Most common user reactionsMost common user reactions 8 reactions 3 comments
Post
See full photo

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

Most common user reactionsMost common user reactionsMost common user reactions 16 reactions 5 comments
Post
See full photo

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