Category Archives: relationships with medical professionals

50 shades of fatigue?

Sometimes I find it hard to explain the fatigue I experience to other people so that they can understand why I have so much trouble working consistently. It’s not just being tired, like feeling tired after a long day. The … Continue reading

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Medical records: the plot thickens

In the previous post, I described how I had called my doctor’s office to ask someone to look through my chart to find out when I was last vaccinated for mumps and whether I am immune to mumps; a week … Continue reading

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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

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

Colonoscopy allergy mystery

In┬áJune, I posted about being sent for drug allergy testing to see if I could use anti-inflammatory painkillers that I’ve had allergic reactions to before. I went for the testing about a month ago. First off, the doctors at the … Continue reading

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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

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

Under pressure

I saw my gastroenterologist the other day for a regular checkup. The first words out of my mouth were that I’ve been doing well lately on Remicade every 6 weeks, much better than I had been doing on it every … Continue reading

Posted in bureaucracy, evidence-based medicine, fatigue, government policy, illogical, reimbursement, relationships with medical professionals, Remicade, treatment | Leave a comment

Crohn’s and work: ongoing stress, flexible schedules

It’s been a while, but I’ve found some time in between rushing to get work done, getting sick, dealing with the backlog, etc. to be able to post again. First, some more stats, because I know we all love stats: … Continue reading

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