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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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#Showyourstripes on #RareDiseaseDay2021

When it comes to illness.. it’s not Always black and white 🦓.

It is finally #RareDisease day. !

I made it rare disease week oh my social media . And considering #RareDisease week to be the COOLEST idea I’ve ever had . Because the rare disease community has taught me SOO much.

Seriously to those who have commented and shared there stories with me this week .
Thank you ❤️ thank you so freaking much .

Through the years I’ve shared my story , and my life with rare disease .

And I can’t tell you how much it changed my life,
When I found this Incredible community and learned I wasn’t alone .

I’m constantly bolstered by the strength , courage. Determination , support, and love in the chronic illness and rare disease community

You all through the great things you do.
Remind me , though my body may be broken .
I am capable of great things ❤️:

As the 1 year anniversary of COVID hits
And my 5 year anniversary of going to the Mayo Clinic
( you know where they litterally sent me home to die with the words “ we can’t help you.. enjoy what life and quality of life you have left “ )
And 4 year anniversary of my cancer diagnosis #dfsp

I’ve been reflecting on how rare disease ... and illness in general has changed my life , my path and I’m perspective

And at times my soul has ached thinking about who I could have been.
What I may loose to do my illness

But at moments .. so incredibly grateful for who I have become.
And what I have gained .

Because we are not the darkness. We are not the things that have broken us .. that have damaged us .

We are the light , that refused to stop shining . Despite of everything blowing against it.

Stay fighting , be strong. #careaboutrare and always #smileon🐷

#spoonie #Rare #RareDiseaseDay #nord #hope #itsinmygenes #chronicillness #chronicpain #faith #trust #perspective #mightytogether #Showyourstripes


Rare Disease Advocacy & Collaborating

Yesterday I spent the day on Capitol Hill with rare disease advocates from my state, as part of Rare Disease Legislative Advocacy week through Every Life Foundation. I have been part of the rare disease community since birth, and have a rare disease that has a strong organizing body. As a result, I wasn’t fully aware of the collective voices of so many others that have done tremendous work that I have benefitted from. Illness isn’t limited to certain communities; it crosses a diversity of racial, ethnic, political, religious and socioeconomic boundaries. We all do so much better when we work collaboratively on solutions that benefit all without focusing on our differences. #Bettertogether #RareDisease #Showyourstripes

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The amazing stories from The Mighty often resonate with me. Although I have Crohn's disease, the stories that tug at my heartstrings most are those about people with different abilities and particularly parenting a child with a disability. That became my life six years ago, and I'm excited to share our journey. Being rare doesn't mean you're alone. #MightyTogether