Common Variable Immune Deficiency

“So what are your plans for the future “

My old councilor once asked me .

“ Hope I have one “ I responded with a witty chuckle .

He busted up laughing then said “ No really .. what are your plans for the future “.

I had to be honest and tell him I stopped planning for the future long ago .

Becuase of my illnesses in my eyes life had become an hour by hour , minute by minute situation .

Approach it with no plans , just a “fly by the seat of your pants “ situation. And hope you make it to the “next level . “

Sorrow filled his eyes as he told me .

“ The things you really really want . You have to plan for .

I want you to do one thing that will go towards your future “

And the thought of that terrified me .

( Yep I am THAT big of a commit-a - phobic )

But here I am 3 years later .
And Today I went to the bank and finally took that advice .

And it felt so good .

Most people in my life viewed this act as something super small

Heck it probably is

But it gave me a bit more hope in the big beautiful “ maybes” the future might bring

And in the season of life I am in . That little step meant everything

I challenge you to make one little act , one little plan for the future , and see just how good it feels ❤️ #MightyTogether #CommonVariableImmuneDeficiency #RareDisease #MentalHealth #Anxiety #Undiagnosed #autoimmune #MCAS #ChronicIllness #ChronicPain

Years ago when I was heavily dealing with some of “side effects “ of life threatening chronic illness
My councilor gave me probably the best advice I’ve ever head .

“ Live every day like your waiting for an exciting package from Amazon “

And explained to me that often the joy and excitement we get , is not really from the item itself . But it comes in the waiting , the planning and the prepping for something great to arrive.

( I think I can low key blame my shopping addiction on him 😂😉)

But with the chaos I know is coming
I’ve found myself

Re learning the importance of that statement

Though illness has turned me into a realist .

Most of the time being a realist is vastly overrated.

Sometimes you have to mentally plan that interior design room makeover
( that may take a year or more to actually get done )

Step by step plan the dream garden
( that your probably to sick to actually do )

Dream of moving to sea level ( to help your crap lungs ) to an equestrian community
and start from scratch

( You all live in this economy and have seen the housing market.. you know this is the biggest day dream of them all 😂)

But gotta dream of vacations your going to take , places your going to see , things your going to do .

Even if it’s just for the fact that , dreaming about a brighter tomorrow
Makes getting out of bed today a bit easier .

Sure there is a GIANT chance the things you dream of won’t happen .

But even the most harsh of realist , can’t deny that there is a chance that they might .

I say , believe in the good that’s to come ❤️

#smileon🐷 #ChronicPain #ChronicIllness #raredisease #hope #MightyTogether #pcos #CommonVariableImmuneDeficiency #autommunedisease #MastCellActivationDisorder #MightyTogether

Sometimes we show the picture we paint for the world to see

A trickling laugh
Beaming eyes
And a seemingly permanent smile

Even though you were crying in the docs office 10 minutes prior

Heck, your still embarrassed you cried in the doctors office, Because you promised yourself you would never do that .

But here you are
Sitting on a creaky hospital chair
Waiting to be called back for an Xray
Feeling .. As weak as the skeletal structure that holds a body that feels unfit for the job it was made to do.

But still you ask the awesome lady at the front desk how her day has been

Compliment the lady with the cute shirt next to you.

Still you smile when the radiology tech calls your name , and respond to “ how are you doing “ with
“ I’m alright “

Even when you feel far from it

Hug a friend you see in the hallway

Because life is hard for all of us .

And one of the main things life has taught me is

Sometimes it’s more important to help create joy

Than share your pain #ChronicIllness #RareDisease #AutoimmuneDisease #CommonVariableImmuneDeficiency #MastCellActivationDisorder #MentalHealth #Migraine #ChronicPain #MixedConnectiveTissueDiseaseMCTD

I Met my younger self for coffee

Which neither of us drink

My younger self confused .

I let her know that Starbucks , has more options than you would ever think .

I was nervous for this little date

Oxygen in my nose , walker balanced infront of me .
I was scared to let her see what we had become .

But when she saw me with a smile and tears and her eyes.

She did maintain her gingerly pain filled walk
But tried to come to me in an embracing run

I thought this invitation must be fake

Because if you.. we . Weren’t alive .

There was no way you could come by

I held my younger self in my arms , both of us weeping , full of pain , gratitude and pride

Because only the 2 of us and God truly know
how hard we have fought to survive #RareDisease #progressivedisease #ChronicIllness #CommonVariableImmuneDeficiency

I’ve been doing really well getting my infusions at home subcutaneously in my belly fat weekly. I’m still having issues with ovarian cysts & had another one rupture recently. An ultrasound at the E.R. revealed that it’s now gone. Just dealing with the fluid that gets trapped so, I’ve just finished a 2wks. course of antibiotics & high dosage of corticosteroids. I’ve got a couple of 4mg. Hydromorphone pills while I’m pms’ing if needed for pain from my pain management doctor. Otherwise, I’m just on Tylenol with Codeine every 4hrs. for my chronic widespread pain. I had a failed Laparoscopy surgery I wasn’t able to get accomplished due to failure to be intubated because of my arthritis. Oh well, I just can’t have much sexual pleasure in life anymore. It’s not any fun but, I’ll survive. #ChronicPain #ChronicIllness #ChronicFatigue #CommonVariableImmuneDeficiency #Spoonie #Endometriosis #MentalHealth #PTSD #RareDisease #MightyTogether

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