“We’re in this together” and “these challenging times” are two phrases that kind of make me cringe. I may sound like an a-hole, but what I want to say is coming from a good place… Ever since I was diagnosed with FA (10 years ago), life has been challenging. I don’t want to overstep and… Continue reading Always in these challenges together
Since the apocalypse is going on and I need to stop online shopping, I am going to bury myself at home to write for a few hours: The last post I wrote was about my horrible acid reflux/heartburn and how I was going to get an endoscopy that next day…so I got it and it… Continue reading The fun tests
Friedreichs Ataxia has, unfortunately, led me to use an assistive device and others may have to use something too. This should be a reminder to always be mindful of how important an assistive device is. I am going to share a true story, that I shared about a year ago on a FB post, but… Continue reading Legs. Wheels.
It’s been a whirlwind of days, weeks, months, even the whole year of 2019. So many ups and downs and a little in between. It feels too personal for me to share with the world, so I’m going to rattle off random topics I’ve been circulating… 1. Life is too damn short and complicated to… Continue reading The beginning of 2020
I have an obvious disability and I think it should be recognized and addressed; meaning, don’t ignore it and treat me like your average Joe because Hello! I’m not. I have been through the ringer to relearn tasks and everyday living in a different manner than the able bodies, so acknowledge my differences. You don’t… Continue reading Be in the middle
I went down to Tampa, USF, for my 5 month check up of Reata 408 Phase 2—extension (MOXie) October 10th and heard the most amazing news…This drug is moving onto phase 3 and has high hopes to be FDA approved!!! An FA drug has never made it past its final phase with positive results—Reata’s MOXie… Continue reading MOXieeeeeee
I went to a local gas station the other day and because they’re OG, they pump gas for all their customers; super convenient for an FAer! Anyway, I hand over my debit card and instruct him on the type of gas and how much; and he gave me a kind of look like the look… Continue reading Assumptions
What is it like having a disability? I often wonder that question not only for myself, but for others. Every variable matters in answering that question. What disability are you living with? What’s the severity? Are you independent/dependent? Do you have family and/or friend support? Are you in a romantic relationship or single? Do you… Continue reading What is it like to have a disability?
I’ve been to Tampa 3 time the past few months for the drug study RTA 408 Phase 2 Extension. I’ve traveled down there so many times the past 6 years, I know the ins and outs of travel with my eyes closed.🙈 My friend came with me in April and my mom the other 2… Continue reading Suit Up—More Goodness. More Travel.
A magical vaca in the books! For Eli’s spring break, we (my cousin, Elise, her hubs, David, their daughter, Birdie, Eli and myself) took a trip to Disneyland! This vacation was planned months in advance and I was beyond fortunate to have David and Elise do a majority of the planning. I had never been… Continue reading Magic