spooniestrong selfie saturday


This is my first spooniestrong Saturday selfie. I figured I should also add one with my date. And the last one isn’t a selfie but it shows my amazing group of friends and my cane that we dolled up for prom too.

I was so proud of myself for being able to make it through even with heels on! The cane and braces helped so much. We named the cane Betty and wrapped a silver ribbon around it to match my dress. My group voted my cane our prom queen of the group.
This was the first main public event that I had the cane for and honestly I was so scared that I would get judged for it.
But I’m no longer scared of what other people think. I am not my illness. Ehlers-Danlos Syndrome is not what defines who I am.
So thank you for giving me an opportunity to show off Betty and supporting all my fellow spoonies.❤️


hi everybody!! i hope you’re all doing well!! 🌺

i was really nervous to post this but i really wanted to share with you guys how far i’ve been able to come. the photos on the right are of me at my lowest point, emaciated and in the hospital six months ago (feat a lovely therapy dog) and the photos on the right are of me today. 

last october i was hospitalized because i was pretty much unable to eat anything due to my gi conditions, i was vomiting, i couldn’t sleep, my hair was falling out, i could barely walk, I was in constant pain, and i had lost a dangerous amount of weight. i was 89 pounds and honestly felt worse than I ever had before. i missed months of school, and was forced to partially drop out, and had a complete emotional breakdown.

after being on an nj feeding tube for 4 months, going on and off a dozen different medications in order to find ones that work for me, and finding a great team of doctors, I am finally at a healthy weight that I have been able to maintain without a feeding tube and i am in significantly less pain! im still struggling a lot but for the first time in a very long time i actually feel good about myself. 

Invisible Illness Awareness Video 2015:

Take a picture of yourself with awareness ribbons for your illness(es), find a list here if you don’t know the colours. You might have to use two arms. You can tag me in your pictures using the ‘@’ feature, or you can submit your photos to me, or tag them with ‘IIAV15′. I have blue for M.E., red for Cardiomyopathy, and purple for chronic pain. 

Also this is my spooniestrong selfie saturday


struggling with my breathing still so i got this funky contraption so I can breath deeply enough for my inhaler to work. its so much easier to get a breath with it and it makes a cool whistling noise that makes me giggle. if i keep it long term im gonna decorate it so it matches my cane~ feeling weak and ill but still cute c: (they/them)