After Ten Long, Long Days

Sometimes I think I should have called this blog "Up the Creek Without a Paddle".

It's been a trying time over the last while. Today is the first day in a week and a half that I've not had a fever or significant chest pain. I'm not sure what my body is trying to tell me but I'm really not getting the message. Well, maybe that's not entirely true.

Eleven days ago I felt well enough to go to my hospital appointment on my own on the train. My husband dropped me off at the station so that I didn't have to deal with that long walk from the end of the parking lot. A pleasant ride, lots of families going into the city for the day to visit the CNE (the annual end of summer Canadian National Exhibition). From there, the streetcar to the hospital. Lots of Torontonians detest the streetcar; they're slow, noisy and can be unbearably hot in the summer if you happen to land on an older un-airconditioned car. But I love it. I've always loved this city, and the streetcar shows me a slice of this city that many who rely solely on their cars miss altogether.

My doctor and I discussed our revised plan of action after the disappointing Enbrel trial. We decided to let me have a break from the "more serious" drugs and let me stay on maintenance meds for a month to let my system calm down. I had sent him some info on Kineret (a drug I mentioned in a post early in the year); a study has produced some promising results. The clinical trial documented the use of Kineret for two ECD patients in Europe. Yes, I said two. That's what happens with extremely rare diseases, but I'll take whatever hope I can grab onto. Kineret was initially dismissed by my team of doctors but I'm keeping my fingers crossed that we can start this whole approval/insurance application/beg for a drug donation circus all over again.

After my appointment I still felt fairly energized and decided to again tackle the streetcar, this time with a pit stop for some people watching on Yonge Street. A visit to a favourite store, and then feeling still pretty awake (rare for me!) I decided to walk down to the train station.

I hadn't had that much fun in a long time. I felt normal. Years ago I worked in the financial district, facing these crowds everyday. Although I love my new career, at that moment I missed the normalcy of that life so far away. Busy, productive, somewhat predictable. Travelling a lot to some fascinating cities (and some really not so fascinating!). I regularly updated my five year plan, and it all seemed feasible - and for a few years afterwards it was.

I came home with a big smile. No one who'd seen my that day in the city would have guessed that I'm ill, maybe noticed that I walk a bit awkwardly and slower than I used to. Maybe she has a twisted ankle? Sore from an extra tough workout at the gym?

The next morning I awoke with a fever and excruciating chest pain. And I don't use that word lightly. And for the next ten days it didn't let up except for a few brief hours every few days. No appetite, the most I could stomach was a few crackers to take with my pills. After a week I called my doctor who asked me to double all my meds, and add one more to try to get on top of this flare of pericarditis. He suggested that I might have picked up a virus on my trip to the hospital/downtown - after all my immune system isn't very strong right now. Maybe I just exerted myself far too much on my downtown trip and my heart was rebelling.

I've been feeling defeated, that I will pay each time for a small bit of freedom. It just seems too coincidental that every time I do something a bit more strenuous that a virus is the cause.

And I'm simply amazed that despite the daily gymnastics going on my chest, that my heart still keeps going. One truly amazing example of the resiliency of the human body. For how long?

Today I'm eating again, working a bit in my office and even managed a quick trip to the grocery store. These better days are essential to my mental health and I treasure them.