Summer 2026: Health Update

Summer has gone by WAY too fast. I’ll share some personal health stuff here, so if that’s not what you’re looking for… then: you’ve been warned!

Yesterday morning I woke up sick. I’ve been dealing with severe neutropenia/leukopenia (no immune system) which resulted in me acquiring a fancy new hematologist (blood doctor), rather urgently. My GP and rheumatologist have been following the peaks (virtually none) and pits (all over the place, pitting further and further) since February. When my levels dropped to critical, enter the new blood doc! With blood work weekly (sometimes many times per week), a ‘go to hospital when you are sick’ order, arthritis drugs on hold (indefinitely) and a new drug to try: Grastofil!

Sunday: Grastofil, dose one
Monday: blood work
Tuesday: blood results still poor so Grastofil, dose two
Wendesday: blood work
Thursday: blood results still poor (pit)

The theory we’re currently operating with is that my RA is doing it’s autoimmune thing and destroying my while cells and neutrophils. This means I have no functioning immune system and no way to protect against infection.

Yesterday/Sunday when I woke up sick, I tried to sleep it off. Puffy eyes, dizzy, extreme fatigue (worse than my baseline) and hot flashes. Because my immune system doesn’t work properly, it’s not unusual for me to not be able to produce a proper fever response. It also means that, should I become infected, the infection will spread rapidly requiring hospitalization.

Around 2:30PM I did what most people who wish to remain alive would do and reported to the local ER. I was triaged and seen by the doctor. In hospital, my blood results were INSANE. They had spiked. Neotrophils from 0.2 to 2.2 and White Cells from 2.3 to over 5. Now, when I tell you I was SHOCKED I was shocked!! After reviewing my labs, so was the doctor. Does this mean the Grastofil worked (and was maybe just delayed) or could it have been the faeries? Probably a bit of both. My levels have never been this high, like, ever.

The doctor also examined me and treated me for dehydration. He later diagnosed me with a viral infection known as labyrinthitis.

Good news: I am able to fight the infection, so long as the Grastofil (temp. booster) lasts.
Bad news: Grastofil is temporary so I am hoping it lasts long enough.

I have a full scope scheduled for Friday, Sept. 4 so I will be a write off next Thursday and Friday. Following that, I hope to have some more answers about what has been kicking my ass since winter time.

Thanks for the positive messages of support and for helping me stay positive. I have been doing a bit less in all aspects of my daily life to allow my body to function as best it can. Will keep you posted!

This IV machine is from CHEO which seems very fitting.