Four AM updates with Christmas tea

I’m receiving Rituxan infusions once a week for a month to kill off my immune system.

I’m receiving Rituxan infusions once a week for a month to kill off my immune system.

It’s four in the morning and I’ve chased my dog from the room with the sound of my clicky keyboard. Some combination of drugs and disease woke me up after a full two hours of sleep and I’ve been awake ever since. Reading early morning Tweets about British politics, playing Gears Pop!, and trying to see if my Apple Watch would tell me if I was dying failed to send me back to sleep.

So now I’m typing, drinking Christmas flavoured tea and trying not to notice the effects of the steroids that hold my Granulomatosis with Polyangiitis in check fading before my next dose at 6:30 am which is usually as late as I can hold off before giving into the pain. Two and half hours shouldn’t be a problem, not when there’s blogging to catch up on.

And Christmas tea to drink.

Since my diagnosis in May things have moved slowly. My rheumatologist wanted to consult with a nephrologist about the state of my kidneys, which led to months of back and forth as various different nephrologists consulted my charts and said that they didn’t particularly want to do a biopsy to see if the disease had spread to my organs. Figuring out if the disease had spread to my kidneys was part of the plan to apply to the federal government for the most advanced treatment option of Rituxan infusions.

It turned out that we were able to convince the federal government to pay for the treatment without the biopsy and not for the first time I’ve been grateful for our Canadian Health Care system.

Now once a week for a month I sit for hours getting a powerful drug injected in me to stop my immune system from killing off my blood cells. Afterwards I’m sick and groggy but eventually this will help.

At least for the next six months.

Until then I’ll be chasing my dog from the room with the sound of my klicky keyboard, trying to figure out what combination of medicine and pain killers are keeping me awake at four in the morning after desperately trying to win one more game of Gears Pop! before my Apple Watch informs me that I’m dying.

Or maybe I’ll just chase my dog from the room with the sound of my clicky keyboard and post another much belated update to this long forgotten blog as I sip my mug of Christmas flavoured tea.