Category Archives: frustration

Scraping by

The last two treatment cycles have been weird. Two cycles ago was great. I had a lot of energy and didn’t feel sick for most of the time. Work went very well. I also had the energy to do some … Continue reading

Posted in allergies, exercise, fatigue, food, frustration, gut problems, psoriasis, social life, treatment, virus, work | Leave a comment

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