Common Variable Immune Deficiency

Taylor Swift sings the famous line “ Time turns flames to embers
You'll have new Septembers “

Atleast with my diseases .

I never know if that fact is true .

It’s crazy to live with diseases that make life so uncertain.

But there’s a strange blessing that comes with that uncertainty…

The gratitude.

We’ve officially reached the “BER” months, and as you know, I am a SUCKER for these months. 😂

1. I’m an October baby. 😉
2. Holidays = life. ❤️

Looking back on Sept of last year , has me thinking about just how much life has changed over the past year.

How many times my heart has been shattered.
How many times it’s been completely full.

The times I didn’t think I was going to make it.
The times I didn’t care if I did.
And the times I was so incredibly grateful just to be in the moment I was in.

And all I can say is…

No matter how unbearably hard some days feel right now,

I am so grateful for another September.🍂❤️

How has rare disease changed your perspective? #RareDisease #CommonVariableImmuneDeficiency #GeneticMutation

My immunologist is taking me off of IVIG for 2 months to do some further testing , and during this time I have caught EVERYTHING ( can viruses and bacteria be the one thing we done share during the holidays lol?). I currently have a throat that’s SO red and swollen I can barley swallow water . ( thank goodness covid and strep were negative ). What are your favorite things to eat / drink when you have a sore throat ? #CommonVariableImmuneDeficiency

“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