Category Archives: Remicade

Shingles sucks.

About two weeks ago was mid-way through my latest Remicade cycle, so the ideal time to get the flu shot. I figured I’d feel mildly gross for two days or so, and be back at work by Monday. That did … Continue reading

Posted in coping skills, diagnosis, difficulty concentrating, fatigue, frustration, immune suppression, mania, mobility impairment, rash, Remicade, side effects, symptoms, treatment, vaccines, virus, wages, work | Leave a comment

Here we go again: another EAP backlog

The last week has been fairly trying. It started off last week with me eating something that would normally not be a problem, but that obviously was not OK for me to eat so far into the treatment cycle: vegetarian … Continue reading

Posted in backlog, biologics, bureaucracy, disability, Exceptional Access Program, fatigue, finances, food, frustration, gut problems, Ontario Ombudsman, reimbursement, relationships with colleagues, Remicade | 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’s 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

13 years of Remicade behind me

I started Remicade in February 2004. If I had a child as old as the length of time I’ve been on Remicade, he or she would be entering high school in the fall.

Posted in biologics, Remicade, Uncategorized | 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

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 backlog, bureaucracy, Exceptional Access Program, frustration, government policy, Remicade, treatment | 1 Comment

Fatigue

I was up for several hours last night with gut problems so I’m a little out of sorts today. This got me thinking about how much I’ve been able to work in the last while. I made this chart showing … Continue reading

Posted in Crohn's research, disability, fatigue, gut problems, Remicade, symptoms, treatment, 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