Common Variable Immune Deficiency

When After 3 days of antibiotic shots , and a week full of migraine shots , infusions , steroids , ect .. You FINALLLYYYY feel good enough ( aka have enough spoons ) to wash your GIANT stinky dog 😂❤️! #winning I’m
exhausted but it was worth it ! What’s a “win “ you had today ? #Spoonie #ChronicIllness #ChronicPain #CommonVariableImmuneDeficiency #RareDisease #spooniepets #youngadult

If 1000 people with your same condition where in the same room as you , I bet you would be the only one with your perspective on life “

The man at our churches end of summer party responded to me in what felt like a half disgusted , and in another way half impressed form of bewilderment .

He is the type you can tell life had not handed a kind hand to .. and in process he has hardened with the pains he has had to endure
( kind of how the same water that softens a potatoe hardens an egg )

I smiled and said to him

“ Not exactly, I’ve had the opportunity to work along side and get to know many with conditions like mine ,
Or worse .. and the perspective on life with severe illness .. it’s kind of a mixed bag “

And he could just not wrap around his head around how im so happy .. but a 28 year old , with failing health .

I tried to explain how even though im lacking in the physical health department .. I I feel like I can have joy because God has blessed in so many ways .

With a chuckle and a smile he told me he was Jewish 😂❤️.

He could not wrap his head around how I see the world .

And I could not wrap my head around how he sees the world .

Maybe God knew I needed this conversation when it seemed like all I was doing today was marinating in the frustrations of my current situation .

I even came out to our Church cook out knowing I didn’t physically feel good enough to be there , and cursing out the constant drizzle of rain .

But as it rained , 2 rainbows formed

And through my conversation with this man . The rainbows just seemed to get brighter .

As I left the party , feeling a new perspective on how to face my current dilemmas .

I couldn’t help but say a silent prayer to God thanking him for the rain in my life .

So I know just how important rainbows are . 🌈

How has your health changed your perspective in a way others may not understand? #RareDisease #CommonVariableImmuneDeficiency #MastCellActivationDisorder #Epilepsy #LungDisease #MentalHealth #MixedConnectiveTissueDiseaseMCTD #Glaucoma #Gastroparesis #chronicmigraine

Meet Kristo—he suffered from pains in his body, fibromyalgia, three heart attacks, and one stroke, and has been using a sleep apnea device since 2012.

After 25 years of diligently following the medications and surgeries prescribed to him, his long-term doctors informed him in mid-May 2019 that they could no longer do anything for him. By this point, his body had deteriorated significantly.

He could no longer walk well. His vision was only 30% after two failed eye operations. Using two crutches, he could move a maximum of 100 meters before losing balance and falling over due to the pain. He had been suffering from chronic fatigue for at least 30 years, dragging himself through each day.

His wife, his caregiver for many years, juggled her job in childcare with an unpaid "job" as a nurse, driver, cook, cleaning lady, gardener, and chef, leaving her little time in her busy, hectic life.

Kristo was told to get comfortable in a scooter for disabled people and a wheelchair because that was going to be his life going forward. Their world fell apart - until a friend introduced him to our program.

See the new man! Kristo’s journey from chronic fatigue and debilitating pain to renewed vitality is just one example of how our program is helping many people get their lives back holistically, without medications and surgeries.

We are looking to talk to 60 men and women, especially those over 50, who have health problems and are serious about finding a proper solution.

Your insights will help us build a program tailored to your needs. Participants will be rewarded with a 10% discount when the program launches. It provides transformative results, by the way.

Interested? YES or NO?

Comment below if you want to participate!

Thanks!

#ChronicFatigue #ChronicIllness #ChronicDailyHeadache #ChronicLungDisease #ChronicPain #chronic #ChronicLungDisease #ChronicInflammatoryResponseSyndrome #ChronicPancreatitis #ChronicTraumaticEncephalopathy #ChronicObstructivePulmonaryDisease #ChronicOrthostaticIntolerance #ChronicVestibularMigraine #MentalHealth #Addiction #chronic #Anxiety #Arthritis #BackPain #CeliacDisease #CommonVariableImmuneDeficiency #ComplexRegionalPainSyndrome #Eczema #EosinophilicEsophagitis #HashimotosThyroiditis #ChronicLymphocyticLeukemia #HashimotosThyroiditis #InflammatoryBowelDiseaseIBD #InterstitialCystitis #IrritableBowelSyndromeIBS

My needs make sense; my limits make sense. #Spoonie #ChronicIllness #ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #MentalHealth #Anxiety #Depression #ObsessiveCompulsiveDisorder #PTSD #PTSDSupportAndRecovery #PostTraumaticStressDisorder #MightyTogether #EhlersDanlosSyndrome #Fibromyalgia #Sarcoidosis #Arthritis #AnkylosingSpondylitis #RareDisease #CommonVariableImmuneDeficiency

The “ Trolley Problem “ has been on my mind all day today …

It’s probably because , As I should have predicted yesterday’s infusion of 4mg of IV Copper ( instead of my usual 2mgs ) to treat my dangerously low copper levels that just won’t seem to rise .

Has not been my friend 🤢.

I’m one who hates to be still . But Ive spent all day in my bed sleeping or watching tv .

As I’ve been nauseous , felt like my throat and entire body has been attacked by sand gnats , I’ve had body aches beyond control , and exhaustion belief .

My nerdy little brain has been thinking over and over abb“ The Trolley problem “

If you don’t know what that is Wikipedia states that

“ The trolley problem is a series of thought experiments in ethicsand psychology, involving stylized ethical dilemmas of whether to sacrifice one person to save a larger number.”

I thought of how relates with some of the treatments I’ve had

With the big car being my future . Then current me would be tied to the tracks , completely and utterly being held against my will .

When I first started oral chemo ( for my connective tissue disease ). , my hair started falling out and my head rarely left the inside of a toilet .

My IVIG I need to stay alive due to my CVID has tried to kill me multiple times , and still tries to ,
( It causes anaphylactic reactions thanks to my Mast Cell Activation Syndrome )

And the reaction I’m having to copper on this higher dose is everything an IVIG reaction minus the part where my throat closes off ( thank goodness )

Often it feels like I’ve had to a sacrifice what I want my life to be , So that big train can drive through

Sometimes we have to sacrifice the comfort and convenience we CRAVE now ( often leaving us feeling like we got hit by a train )
So big beautiful things can “arrive “ to our future

And in my case , so I can have a future at all .

So here is to suffering , that leads us to a big beautiful someday

Keep going ❤️

#RareDisease #copperdeficency #Infusion #MastCellActivationDisorder #CommonVariableImmuneDeficiency #MixedConnectiveTissueDiseaseMCTD #IVIG

APRIL IS… National Primary Immunodeficiency Awareness Month. #RareDisease #CommonVariableImmuneDeficiency #PrimaryImmunodeficiency #ChronicIllness #Spoonie

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

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

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