Category Archives: social life

Just try harder

One of the things I hate very much about having a chronic/intermittent illness is that I can’t predict when I’ll be well enough to do the things I’d said I’d do or that I’d like to do, and when I’ll … Continue reading

Posted in accommodations, bias, coping skills, difficulty concentrating, disability, fatigue, food, friendship, hidden disability, immune suppression, organization, partners, planning ahead, relationships, relationships with colleagues, relationships with family, relationships with medical professionals, social life, unpredictability, work | 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

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┬áthat 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

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

No measles vaccine for me

So there has been an outbreak of measles in my region. I take public transportation regularly and I’m not a hermit, so there is a real chance that I could be exposed to the measles virus if an infectious person … Continue reading

Posted in diagnostic tests, immune suppression, organization, planning ahead, public outreach, relationships with medical professionals, Remicade, social life, treatment guidelines, virus | 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

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

Frozen peas and instant noodles

Lately, I’ve been very busy with work. Even though I last had Remicade only 3 weeks ago, I’ve been pushing so hard that I’ve had to have 2-hour naps right after breakfast for the past 2 days. Considering how much … Continue reading

Posted in fatigue, food, iron supplements, relationships, social life, work | 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