Category Archives: frustration

Worried again

So I had Remicade less than 2 weeks ago, but, since then, I’ve still missed work 50% of the time because of fatigue, and still have ulcers up my nose and psoriasis in my ears, etc. It’sĀ almost as if I … Continue reading

Posted in biologics, difficulty concentrating, disability, fatigue, frustration, psoriasis, Remicade, treatment, ulcers, work | Leave a comment

Medical records: the lost years

There is an outbreak of mumps in my city, so I figured it’s time to check when I last got vaccinated against this disease. I called my doctor’s office to find out what they had in my records about all … Continue reading

Posted in anger, arthritis, coping skills, diagnosis, diagnostic tests, frustration, gut problems, immune suppression, medical records, misdiagnosis, organization, relationships with medical professionals, Remicade, vaccines | Leave a comment

Scary times

Hi everybody. I haven’t been posting for a while because I’ve been sick a lot. Some of the time I was sick from colds being passed around because of the new school year, but some of it was Crohn’s. Twice … Continue reading

Posted in biologics, coping skills, diagnostic tests, fatigue, food, frustration, gut problems, immune suppression, organization, planning ahead, relationships with medical professionals, Remicade, treatment, ulcers, virus, work | Leave a comment

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

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

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

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