Purple diary entries and hot peppers

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Originally I had been filing my medical appointments in our family’s shared calendar as “Family” events. This had been a category previously reserved for trips down to Seattle to visit the zoo or traveling to Kelowna to visit the kids’ grandparents (my side of the family). Now it was a series of blood tests, doctor visits and consultations.

Creating a new “Medical” category I changed the colour of these events from a cheery yellow to a solid and (ideally) reassuring Purple. Nothing bad happens in purple.

The purple dots on my iPhone’s calendar screen seem to be multiplying like bunnies.

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For the time progress seems to be limited and it’s like being in a maze. One visit to a doctor leads to no new answers just a referral to two new doctors who each have me give them blood and then ask the same series of questions before going off to consult with the other doctors.

Meanwhile we’re adjusting downward the amount of Prednisone that I’m taking. The steroid is what’s holding the pain of my Granulomatosis with polyangiitis (no YOU had to Google to remember what it’s called) and as the dosage is adjusted downwards the arthritis like pain is starting to return. Too much of the steroid for too long is a danger, and so it’s a balance between comfort and long term health.

What I have learned is that if my disease was on the menu at an Americanized Mexican restaurant and had to be assigned a “hot pepper rating” to warn how spicy it was it would likely fall somewhere between 2 and 4 (our of 5) hot peppers.

The 0-1 pepper range would have been had only my sinuses been affected by the auto-immune disease but it was tricky to diagnose and so had spread to my skin and joints before being caught. 5 peppers would be when it spread to my brain and lungs and so far it looks like those are clear.

A purple entry in my calendar shows that I’m meeting this week with a new specialist, a Nephrologist who specializes in the kidneys. After collecting my pee in what amounts to a bucket for 24 hours we discovered signs that the disease may have moved onto the kidneys and so we need to investigate that before proceeding.

Then a course of drugs can be decided upon, a treatment and hopefully a path forward.

Hopefully a few less purple dots in my calendar and more of the yellow ones with trips to the zoo and visits with friends and family.