October 13, 2014
You know what’s worse for a hypochondriac than access to google? Having a friend in med school.
Me: Why am I tired all the time even though my iron and thyroid check out?
Med Student: LEUKAEMIA
Me: Why does my heart hurt when I lie on my left side but not on my right?
Med Student: AORTIC VALVE REGURGITATION
October 12, 2014
My memory is strange lately. I was talking to someone last weekend about my mother’s visit to Epiphyte City awhile ago. Then a few nights later, on the phone with her, she brought it up and I did not remember her visit at all – I denied that it had happened. She had to tell me many details of it before I would believe it and even more before I could remember the first detail.
This is one of many things that have gone wrong with my memory lately.
Perhaps migraines are eating holes in my brain. Perhaps that strange migraine I had a few weeks ago was really a stroke. Perhaps this is just how memory works.
Anyway, I’m having a CAT scan soon.
October 10, 2014
Do you remember the pudding hysteria incident? If you do not, let me refresh your memory: coming out of a migraine, feeling terrible, I developed an overwhelming craving for pudding. When I realized there was no pudding, my migraine brain melted the fuck down and I cried and cried and cried. Then, struck by the silliness of crying over pudding at my age, I laughed and laughed and laughed.
A concerned reader of this blog took this situation very seriously and determined that it should never happen again. Earlier this week, I received a mysterious parcel in the mail. I opened the rather heavy box to discover an entire case of butterscotch pudding.
Nearly a week later and I’m still grinning about it.
October 9, 2014
Cheer up! | From the Chronic Pain Self-Management Program Workbook by LeFort and Webster
Have you or someone you loved with a chronic condition been let down by the medical system’s approach to chronic pain self-management? @CampOther, @ElitaBaldridge, @cginpvd, myself, and others are working on a project to improve things a bit and we’d like your help.
Patients with chronic pain and illness often have a hard time getting the help and care they need from the medical system. Learning to manage our conditions is often a long, lonely process of trial and error and google. That’s why I was so excited when my counsellor recommended the Chronic Pain Self-Management Program to me – a program developed by actual medical professionals with research backing it up? How wonderful!
The reality was less so.
The entire workshop is 6 sessions long. I will not be attending further sessions, but I have read through the two books for the course: Living a Healthy Life with Chronic Conditions and Chronic Pain Self-Management Program Workbook. I do think that this course presents valuable information for people with chronic conditions, especially if they are relatively newly diagnosed. If someone had given me the practical information in this course when I was 10, I would have saved myself a lot of trouble. But surrounding the basic, useful, information are a lot of flat out harmful portrayals of people with chronic conditions, ignorance, judgement, and tone deaf language. Structural issues are all but ignored.
As I read Living a Healthy Life, I annotated it heavily, imagining mailing it with all my angry comments to the authors. So when @CampOther suggested a rewrite, I jumped at the idea. A group of us are editing and annotating the book with plans to send it back to the program managers at Stanford. If you’d like to help us, get me your email address and I’ll send you an invite to the google doc where the action is happening.
This program – and it’s materials – are apparently very widely used in this space, so making a change here would make a difference to a lot of people with chronic conditions looking for help.