Invisible Illness

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From earlier today when I had to go get my iron levels checked.

The only time I ever get to leave my house is to go to doctor appointments. #chronicallyill #ChronicIllness #InvisibleIllness #RareDisease #RareDiseaseMonth #zebrastrong

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being chronically ill is a full time job.

I have been chronically ill my entire life. I don’t remember a time when I wasn’t battling some kind of infection. I was born with a rare disease known as primary immunodeficiency or PI for short. More specifically CVID or common variable immune deficiency which usually affects children. I wasn’t diagnose until the age of 28! I receive monthly plasma infusions of Gammagard through a chest port. It helps to maintain my IgG levels since I cannot produce my own antibodies. Basically it just means I’m prone to infections like pneumonia. #piawareness #Showyourstripes #zebrastrong #DonatePlasma #RareDisease #RareDiseaseMonth #InvisibleIllness

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What can you add to your living space to make it more accessible or comfortable?

Let's think about accessibility and comfort today.

Spending a lot of time in bed makes your bedroom or other living space a very important place. Making sure those places are comfortable, accessible, and tailored to your specific needs can be a big help in managing symptoms or getting around more effortlessly.

What's one thing you can add to your living space to improve your quality of life? What's something you already have that you would recommend to someone else?

Let us know in the comments below! ⬇️

#ChronicIllness #Disability #ChronicPain #Pain #BackPain #Spoonie #Fibromyalgia #Neuropathy #MyalgicEncephalomyelitis
#Lupus #Cancer #Gastroparesis #MultipleSclerosis #RheumatoidArthritis #InflammatoryBowelDiseaseIBD #ChronicEpsteinBarrVirus #MentalHealth #ChronicDepression #Anxiety #PanicAttacks #InvisibleIllness
#alwaysinbed

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New Episode Alert! 👀 Why No Illness Is Truly Invisible

We know, we know… for a health community, we’re making a pretty bold statement in this episode. But hear us out. This Mighty conversation between @xokat, @chronicallymeh, @harrison-polo, and @skyeg explores what exactly invisible illnesses are, which ones they live with — from EDS to POTS to migraine to misophonia to C-PTSD — and why, if people only paid attention, there are *always* visible signs that someone has an underlying condition. Whether others choose to believe it or not is another episode for another day. Come for the hot take, stay for the reminder that at the end of the day, your perception and experiences matter most.

Grab your headphones, your favorite beverage, and subscribe to Table Talk With The Mighty to hear more topics like this every Wednesday!

bit.ly/tabletalk_10-18-23

#Podcasts #ChronicIllness #MentalHealth #EDS #POTS #Misophonia #PTSD #ComplexPosttraumaticStressDisorder #InvisibleIllness

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Never trust the smile of a spoonie

We are the strongest people you will ever meet. And don't you ever forget it.
We might look okay, but we seldomly are.

We can look like a thousand bucks but feel like we just fell 1000 feet from an airplane onto thousands of legos with oozing cuts and bruises all over but we'll be smiling and laughing.
Our smiles will fool even the ones closest to us. Why do we do this? Because we don't want to inconvencience anyone else with our pain. It's not like we can be crying, screaming and moaning 24/7.
The tears are reserved for the flares that are a 8/10.
So when you see our smile fade, just know we are doing even worse than you can imagine.

We are warriors.

Every single day we wake up and fight our bodies. While we also try to manage our relationships, career and social life - as if those things aren't complicated enough without chronic illness being involved.

Health is the biggest wealth. But only those who lose it can truly appreciate that fact.

Stay strong fellow spoonies. 🤍🤍
#AutonomicDysfunction #POTS #Migraine #Undiagnosed #ChronicFatigue #Spoonie #InvisibleIllness

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What do you find to be the most challenging part about crafting?

Crafting, like any other skill, takes practice; there’s always a new technique to learn or improved products or materials to get used to. And let’s not forget to mention the consistency it takes to keep up with it all!

For me, my biggest challenge is remembering all the steps I need to take when I use my Cricut to make a design, or learning to adjust my printer for different types of paper.

Whether you’re a beginner or a pro, what do you find the most challenging about practicing your craft? How does your health interfere?

#CheckInWithMe #MentalHealth #CheerMeOn #DistractMe #ChronicIllness #Disability #InvisibleIllness

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