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!
Christmas Morning I started taking 60 mg of prednisone daily. I wasn’t really sure what to expect regarding side effects outside of insomnia, which is something that I am already dealing with due to … [Read more...] about Oh, the side effects of prednisone.
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.