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Dynamic disability is a part of my life. It comes with challenges but many wonderful moments too!

Dancing With Differences on Instagram: "9 Months since my Tethered cord release surgery! The best of Months 7-9: -strength seems to be coming back quicker -I have been able to start workouts other then biking but still biking each week -I can do about 6 stairs in a row -I got in and out of the shower myself (also had the grab bar rip out of the wall😬) -I have done a few store trips by myself in the wheelchair -started learning to walk with two crutches -short walking amounts in smaller AFO brace -doing some babysitter again🥰 -cooking more again -got my port-a-cath back in and got to swim for the first time in 1.5 years! -did a night away for first anniversary ♥️ -getting off the floor with only another object to help me (no human help required) Hard stuff: -4 medical bumps in the road -medical burn out has been rough this month😞 -still getting intense nerve pain in lower leg(but less often then I was!) -still have to bum scoot up a flight of stairs -balance still is off and things like flashing lights, the dark, fast movement make me lose my balance -many more falls (because I’ve been feeling adventurous🙃) -driving or especially riding in the car at night makes me so sick. -foot drop seems like a permanent spinal damage thing that surgery wasn’t able to reverse. -still have a tender spot next to my incision that is like lightning pain when pressed. Surgery feels like not that long ago and a lifetime ago all at the same time. Looking forward to another 3 months of rehab time to see where I can get to by the 1 year mark."10 likes, 0 comments - dancingwithdifferences on March 28, 2024: "9 Months since my Tethered cord release surgery! The best of Months 7-9: -strength seems to be coming back quicker -I have been able to...".

Dancing With Differences on Instagram: "This hospital stay for me has been a mix of medication side effects and reactions leaving me feeling awful in bed for hours then also having times of reprieve from the IV doses. For extended hospital stays a routine is so important for me. Sometimes that’s a simple as asking someone to open and close the windows. Sitting by the window. Opening my door to hear the noises from the hallway. It might mean making my bed just to get back into it. Or doing some of my own medical cares. #dancingwithdifferentlyabled #dancingwithdifferences #tethardcord #edszebra #showyourrare #chronicillnesssucks"4 likes, 0 comments - dancingwithdifferences on February 27, 2024: "This hospital stay for me has been a mix of medication side effects and reactions leaving me feeling awful in bed for hours then also...".

I got married! 03-03-2023

A Glimpse into Home Hospital Life

February 28th, or the RARE 29th, people with over 7,000 rare disease come together virtually and in person to help spread awareness for rare conditions. Awareness brings education, understanding and funding for research. On February 28th it is not about our differences but the shared experiences of being RARE. Here is a day in the life of the hosts rare life!

10 years reflection

There is something so powerful of seeing the long hospital bracelet chain. Each bracelet is a story and each story adds up to the person Faith is today.

Reflecting on the emotions of the last 10 years of the ups and downs in the medical side of my life.

*tissue box warning!

Note to my younger self

7 years into the roller-coaster of medical conditions Faith wrote a note to her younger self. Here is the video and some pictures along with her note to herself.

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