Over 300 million people are living with one or more of the 6,000+ rare diseases in the world today. I am one; I am rare. In October 2019 I was diagnosed with Granulomatosis with Polyangiitis, … [Read more...] about I Am Rare: Rare Disease Day 2020 – 29 February
This week has been exhausting… and it is only Wednesday. I’m not complaining though, because today was a good news day. I wasn’t sure what to expect as we headed down I-15 to Salt Lake City on our way … [Read more...] about Infusion therapy & a good news day.
My Nightmare — and a Turning Point For a few years now, I would say approximately 3-4, I have had issues breathing. It started slow, mostly when I was hiking, biking, snowmobiling… but in 2019 … [Read more...] about A Breath of Fresh Life
Yesterday Justin took me to my first appointment with two of the specialists at the University of Utah that I am seeing for my GPA. This appointment was for my subglottic stenosis, and we didn’t know … [Read more...] about Soon I will be breathing normally again!
When I was in my mid to late ’20s, I started experiencing significant sinus congestion, pain, constant sinus infections, headaches, and bloody noses. I saw a few different ENT’s, was put on … [Read more...] about On Moving Forward & Waiting.
Photo by Varshesh Joshi on Unsplash Some good news! My recent urinalysis and blood work on my kidneys show that so far, they are in the clear. For now, it seems my GPA is showing up … [Read more...] about On biopsies, waiting, and taking a seabatical.