Category Archives: frustration

Back from the blackout, with a backlog

The last two months have been interesting. Work has been picking up, and, of course, I got a pile of it dumped on me just as I was heading into my “blackout period” — the week or so during which … Continue reading

Posted in accommodations, biologics, coping skills, disability, exercise, fatigue, frustration, hidden disability, immune suppression, mania, organization, planning ahead, Remicade, side effects, steroids, symptoms, treatment, virus, withdrawal, work | Leave a comment

The devil I know

Over the past few years, I’ve noticed that the number of days I spend too tired to work has increased. I also find that I can work fewer hours per day on average than I used to. This past winter … Continue reading

Posted in arthritis, biologics, fatigue, finances, friendship, frustration, gut problems, immune suppression, mania, mobility impairment, mortality, relationships with family, Remicade, social life, steroids, treatment guidelines, virus, withdrawal, work | 1 Comment

Intermittent disabilities fall through the cracks again

Oh boy, am I peeved. A Statscan report on employment among people with disabilities in Canada came out today in honour of the United Nation’s International Day of Persons with Disabilities. The report was picked up by major media under … Continue reading

Posted in accommodations, anger, bias, disability, fatigue, finances, frustration, hidden disability, immune suppression, sexism, statistics, unpredictability, virus, wages, work | Leave a comment

Kids and colds

Ugh. It’s been a week and I’m still too sick with bronchitis/sinusitis to work. I know exactly where I got it from, too. Two weeks ago a friend of mine wanted to socialize. That would have been great, but her … Continue reading

Posted in disability, fatigue, friendship, frustration, immune suppression, relationships, social life, steroids, symptoms, virus | Leave a comment

Canada’s Convention on the Rights of Persons with Disabilities Report

Canada’s first report on the Convention on the Rights of Persons with Disabilities was released today. I looked through it and I can’t say that there’s much new in it at all. It cites Statscan’s 2006 PALS data on disabilities, … Continue reading

Posted in bureaucracy, disability, finances, frustration, government policy, hidden disability, illogical, statistics, unpredictability | Leave a comment

Remicade is not new or experimental, so why does Ontario treat it as if it were?

Why is Ontario’s Provincial Parliament so out of touch about biologic medications? These medications — especially Remicade (infliximab) — account for a significant and fast-growing chunk of Ontario’s health expenditures*, so a rational discussion of how to balance their costs … Continue reading

Posted in anger, bureaucracy, evidence-based medicine, Exceptional Access Program, finances, frustration, government policy, illogical, reimbursement, Remicade, treatment guidelines | Leave a comment

Service Canada contradictions

Had a rather frustrating talk with someone at EI/Service Canada the other day. (Yes, I now qualify for and am receiving employment insurance (EI). Even though I’m self-employed, I’m also looking for a more permanent position because I don’t have … Continue reading

Posted in bureaucracy, disability, frustration, government policy, illogical, work | Leave a comment

Stupid cost-cutting strategies harm patients

The Exceptional Access Program (EAP) provides a valuable service to Ontarians on expensive life-saving medications, such as biologic drugs. Unfortunately, cost-cutting is a fact of life these days, and, of course, as a taxpayer and a (temporarily) unemployed person, I … Continue reading

Posted in anger, bureaucracy, evidence-based medicine, Exceptional Access Program, fatigue, finances, frustration, gut problems, illogical, immune suppression, methotrexate, Ontario Ombudsman, prednisone, reimbursement, Remicade, steroids, symptoms, treatment, ulcers, work | Comments Off on Stupid cost-cutting strategies harm patients

My diagnosis story

I mentioned in an earlier post that it took 4 years between when I first had (what I now know are) Crohn’s symptoms and when I got diagnosed. The on-again, off-again, unpredictable gut and arthritis symptoms I was having during … Continue reading

Posted in arthritis, bias, diagnosis, diagnostic tests, disability, evidence-based medicine, food, frustration, gut problems, hidden disability, immune suppression, mania, misdiagnosis, mobility impairment, prednisone, rash, relationships, relationships with medical professionals, side effects, steroids, symptoms, treatment, ulcers | Comments Off on My diagnosis story

Crohn’s and the job hunt

This economy is not great for job hunting, and that’s a fact for pretty much everyone. But for people with disabilities, it’s even more daunting to find a suitable job. There are several issues at play.┬áDavid Onley, Ontario’s Lieutenant Governor, … Continue reading

Posted in accommodations, bias, coping skills, disability, fatigue, finances, frustration, hidden disability, immune suppression, mobility impairment, organization, planning ahead, relationships, relationships with colleagues, Trillium Drug Program, withdrawal, work | Comments Off on Crohn’s and the job hunt