Don’t Google it: My new disease

Photo by  Sergi Kabrera  on  Unsplash

“Don’t Google it,” the Rheumatologist warned immediately after giving me the diagnosis. Handing me a printed out sheet of paper he assured me that this one academic website had all the information on Granulomatosis with polyangiitis (GPA) that anyone could possibly want.

Upbeat information about the march of science and new treatments and cures for a auto-immune disease that I had just learned existed (and was currently doing so inside of my body). He assured me that there was no better time to get an incredibly rare disease, as in the past this would have killed me within a year (within 5 for sure) but now I would almost certainly survive.

My headaches started in earnest in December. I thought that they’d be handled by using the last of my work’s medical benefits on a new prescription and accompanying pair of glasses but shortly after switching to the new glasses I went blind for half a day. 

I could make out lights, colours and shapes but nothing really more than that. Commuting from White Rock to Vancouver was challenging, but thankfully I managed thanks to transit. I spent a few hours trying to squint at the computer screens in the studio office hard enough to make working possible but eventually gave up and went back to the optometrist who adjusted my prescription again..  

From there the headaches increased, and were joined by a regular nose bleed and stuffed nasal passages. A visit to an Ear, Nose and Throat specialist suggested that I had a severe nasal infection and a CT scan seemed to confirm that. After the infection did not respond to multiple attempts to kill it off with antibiotics I was sent to a surgeon in Vancouver who assured me that it could be dealt with via surgery.

The only issue was because of my medical history of congenital tricuspid atresia (a heart condition), I needed the surgery at St. Paul’s Hospital and the waitlist was going to be 15 months long. 15 months of bloody noses, headaches so strong that they made it almost impossible to function and a constant exhaustion.   

It would have been a frustrating wait, but things kept happening. I began to develop what I described to my GP as “arthritis like pain” in my shoulders, arms and knees. If getting to work blind was tough doing so without being able to lift my arms past my shoulders was almost as hard. Then I had a brief 5 minute “mini-stroke” where I lost muscle control over the left side of my body. That lead me to visit the ER. 

I was back in the ER within a week when my ankles became swollen and I developed a strange rash there. The doctors took a biopsy of the rash, and after three days sleeping in an ER hallway I was sent to see a rheumatologist. 

Which brings me back to absolutely not Googling my new disease which is no longer named after a Nazi.

So there is that.

I’m still processing things and we’re still learning the extent to which the disease may be affecting my organs. I feel good thanks to daily dosages of the steroid Prednisone which is tamping down my immune system so it stops literally trying to cure my blood from existence.

I’m back at work this week. My employer has been amazing about giving me sick leave to deal with this and I’m grateful to them.

Rather than keep typing in hopes of finding a good joke to end on I’ll just say that life comes at you pretty quick, and end it here. I’m going to try to blog more, write more as things progress. Hopefully there’s not much to write and everything is uneventful.