Category Archives: treatment

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’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

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

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

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

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