Author Archives: Sickie

Tired and frustrated

I am tired. I had Remicade and my steroids last week; usually steroid withdrawal is over by now. But yesterday I was completely in withdrawal mode: unable to concentrate, light-headed, physically tired, clumsy. Today I just want to crawl back … Continue reading

Posted in coping skills, disability, fatigue, frustration, hidden disability, organization, relationships with medical professionals, steroids, unpredictability, withdrawal, work | Leave a comment

Exceptional Access Program 4-month backlog

There was a bit of confusion at the pharmacy when I went in for Remicade yesterday. I was billed a dispensing fee for the very first time; usually the EAC covers the entire fee and Janssen covers my deductible, so … Continue reading

Posted in bureaucracy, Exceptional Access Program, frustration, government policy, Remicade, treatment | Leave a comment

Disability Tax Credit — falling through the cracks again

Canada’s Disability Tax Credit is supposed to help lower the tax burden on “persons with disabilities or their supporting persons.” Registered disability savings plans (RDSPs) are also available to people who qualify for the tax credit to help fund the long-term care … Continue reading

Posted in bureaucracy, disability, fatigue, finances, government policy, immune suppression, symptoms, taxes, unpredictability, virus, work | Leave a comment

Fatigue

I was up for several hours last night with gut problems so I’m a little out of sorts today. This got me thinking about how much I’ve been able to work in the last while. I made this chart showing … Continue reading

Posted in Crohn's research, disability, fatigue, gut problems, Remicade, symptoms, treatment, work | Leave a comment

Unwanted

This story made the news a few months ago but I didn’t get around to posting it until now: a family with a child with Down syndrome was refused permanent residency in Canada because it is believed that the costs … Continue reading

Posted in anger, bias, bureaucracy, disability, finances, frustration, government policy, relationships with family, taxes | Leave a comment

Sleeping on ice vs. my “personal fear factor”

A few times in the last few weeks I had to sleep on ice packs for sacroiliac inflammation — that’s inflammation of the joints where the spine and pelvis meet. This kind of inflammation is a known complication of Crohn’s, … Continue reading

Posted in allergies, arthritis, diagnostic tests, food, mobility impairment, social life, symptoms, treatment | 1 Comment

The devil I know, part II

About a year ago, I wrote about how Remicade is the devil I know — the immune suppression and fatigue can be very frustrating on their own, and the steroid rollercoaster I have every 6 weeks is seriously annoying, but there other … Continue reading

Posted in allergies, Benadryl, difficulty concentrating, fatigue, organization, partners, planning ahead, rash, Remicade, side effects, steroids, symptoms, treatment, unpredictability, withdrawal | Leave a comment

Sometimes I’m OK!

I went on a holiday a few weeks ago. It was the first actual holiday I’d gone on in years. I’m lucky to have a boss who understands that a) my horrible attendance isn’t something I have control over, b) everyone … Continue reading

Posted in fatigue, immune suppression, partners, relationships, relationships with colleagues, Remicade, social life, steroids, unpredictability, virus, work | Leave a comment

Crohn’s and psoriasis versus virus: nasal edition

Long time no see again. Here I am, off sick again. Last week I worked a total of about 7 hours. This week I’ve done about 1 hour’s work. I am annoyed. Since the beginning of the year, I’ve caught … Continue reading

Posted in fatigue, frustration, immune suppression, psoriasis, Remicade, symptoms, ulcers, virus, work | Leave a comment

Feeling anxious?

Some research has just come out of the University of Toronto showing that people with Crohn’s or colitis are two times more likely to have generalized anxiety disorder as people who don’t have inflammatory bowel disease. Here’s the link to … Continue reading

Posted in Crohn's research, disability, statistics, symptoms, treatment | Leave a comment