I’m a woman in my 40s. I was diagnosed with Crohn’s in 2002, but I had it for 4 years before that. I’ve been kept alive since 2004 by a medication (Remicade) that costs more than my gross annual income.
Seeing as I’m a native speaker of English, with a scientific background, some knowledge of how things work here in Ontario, and a very low tolerance for B.S., it seemed reasonable to start a blog to inform people both about what it’s like to live with Crohn’s in general, and what kinds of bureaucratic craziness I have been subjected to in order to get appropriate treatment. A lot of the problems I’ve had with reimbursement were hard enough for me to deal with — even with my family helping out financially and a good emotional support network. I shudder to think what less educated, more isolated, non-native speakers of English are going through when the dysfunction of the system hits them when they’re already suffering from such a nasty disease.
I hope that by documenting what I personally have experienced, it will bring a human face to some relatively complex problems. I hope to give other patients the motivation to keep going. I also hope to spur reforms in Ontario’s Ministry of Health and Long-Term Care, specifically in the Trillium Drug Program and the Exceptional Access Program, so that vulnerable people will not be left hanging without the medication they need to survive and thrive.
Given the sensitive nature of discussing disabilities in public places, I will remain nameless here.
I don’t have the energy to deal with spammers and trolls, so I’ve disabled comments on the site — but if you are not a spammer or a troll, you are welcome to contact me.
I am the author of all content on this site.