Category Archives: steroids

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

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

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

Welcome to my normal

I was at a family event this past weekend while I was having steroid withdrawal. There’s nothing quite like looking dazed and then falling asleep on the floor in front of relatives you haven’t seen in a year — and … Continue reading

Posted in coping skills, difficulty concentrating, disability, fatigue, hidden disability, organization, planning ahead, relationships, relationships with family, side effects, steroids, symptoms, withdrawal | 1 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

IV clinic confidential

Some of you who aren’t on intravenous medicine might wonder what it’s like to actually receive Remicade. Here’s a bit of what a typical visit to the clinic tends to be like for me. Pharmacy I go to the clinic … Continue reading

Posted in diagnostic tests, Exceptional Access Program, IV, mania, Remicade, side effects, social life, steroids, symptoms, treatment, Trillium Drug Program | Leave a comment

Naps and graphs

[Click on any graph to enlarge] For the past 4 Remicade cycles, I tracked how many hours I napped per day. Though I know I didn’t manage to record 100% of all naps, my records are reasonably accurate. I dumped … Continue reading

Posted in fatigue, organization, Remicade, social life, statistics, steroids, symptoms, unpredictability, withdrawal | Leave a comment

Mid-moult

I’m marginally more functional than yesterday. The steroid withdrawal this cycle has been rough. I generally spend at least part of Sundays preparing food for the week, but there is no way I have the energy to cook today. Instead, … Continue reading

Posted in fatigue, friendship, partners, relationships, social life, steroids, symptoms, withdrawal | Leave a comment