Common Variable Immune Deficiency

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

I’m super nervous for my chest port study I’m having done to find out why it’s not working. #ChronicIllness #RareDisease #CommonVariableImmuneDeficiency

Here’s some cheerful artwork to say “i’m so proud of you for making it through your hardest days.” #Spoonie #ChronicIllness #ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #MentalHealth #Anxiety #PTSD #ObsessiveCompulsiveDisorder #Agoraphobia #Arthritis #Sarcoidosis #CommonVariableImmuneDeficiency