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 into bed. I’m not sure how much of this is withdrawal and how much is depression related to being pulled out of a “normal” life all the time and being unable to concentrate.

My medical team has suggested two things to try to improve the situation. The first suggestion was for me to try to keep a regular schedule. I almost laughed at this one — it is nearly impossible. I’ve been trying to do this for years, but I found that resting when I feel I need to lie down is the best way to salvage a certain level of alertness the rest of the time, even if I don’t have the focus energy to be able to work. Afterwards, when I thought about this suggestion, I felt somewhat angry because it has a bit of the implication that I haven’t been trying hard enough, even though I know that’s not what the medical team meant.

The second suggestion was to try modafinil to help with the tiredness, and methylphenidate (Ritalin) to help with the lack of concentration. (I’ve tried Ritalin a few times but, on its own, it doesn’t keep me awake). There’s hardly any research on modafinil and Crohn’s. I’m afraid that these medications may mess me up even more. It’s extremely frustrating to not be able to use my mind the way I used to, or to be able to work without getting exhausted, though, so I may try it.

In the meantime, I just want to crawl under a rock.

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 I knew that something was not right in the system. I called my Remicade coordinator to find out if there were any nasty surprises on the way. She told me that the EAC has a 4-month backlog and that Janssen is supplying Remicade at no cost to patients who are caught in the backlog so that we can get our treatment on time. (Thank you, Janssen!)

I continue to be amazed at the EAC. They are chronically understaffed. I wonder whether the people who work there are quitting out of frustration, making the understaffing worse. Seriously, I wish they’d just get their act together, hire the people they need to hire — there’s no shortage of qualified and underemployed people in Ontario — and stop putting people’s health at risk. (Not all the drug companies are necessarily as generous as Janssen at dispensing medications without hope of reimbursement).

Posted in bureaucracy, Exceptional Access Program, frustration, government policy, Remicade, treatment | Leave a comment

Disability Tax Credit — falling through the cracks again

Canada’s Disability Tax Credit is supposed to help lower the tax burden on “persons with disabilities or their supporting persons.” Registered disability savings plans (RDSPs) are also available to people who qualify for the tax credit to help fund the long-term care of people who qualify for the disability tax credit.

Note that, if I didn’t have my family supporting me financially, I would not be able to afford to work because my income from work is too low for me to support myself. Instead, I’d have to be on the Ontario Disability Support Program (ODSP). If this were the case, I would not be permitted more than $5,000 of assets (savings) because I don’t qualify for the Disability Tax Credit or an RDSP. As I pointed out before, that is one Remicade reimbursement mistake.

Here’s why someone who has trouble working 14 hours a week because of severe fatigue, who gets sick frequently and unpredictably, often for weeks at a time, and who misses 5 days of life every 6 weeks regardless of other health issues because of steroid-related side effects does not qualify for the Disability Tax Credit.

In order to qualify, a person must meet at least one of 3 criteria. The criteria are that a person must have either

  1. impairment in physical or mental functions [that has] lasted, or is it expected to last, for a continuous period of at least 12 months

    — so intermittently manifesting problems like those associated with Crohn’s, epilepsy, and MS would not count —

or, 2. be on life-sustaining therapy,

or, 3. need help with basic activities of daily living.

Life-sustaining therapy is defined as therapy that meets both of the following conditions:

  • the therapy is needed to support a vital function, even if it eases the symptoms
  • the therapy is needed at least 3 times per week, for an average of at least 14 hours a week [original bolding]

OK, fair enough; although people on biologics meet the first criterion, the second criterion is too restrictive to include cases like mine.*

Also, many people on biologics are able to work enough hours to support themselves. I was, too, until the combination of fatigue and viral illnesses got really bad in recent years. And I can perform the basic activities of everyday living (seeing, speaking, hearing, eating, going to the washroom, dressing myself, walking and performing the mental functions necessary for everyday life) unaided.

I and people in similar situations therefore do not qualify for the Disability Tax Credit. But what about the fact that I’m not able to support myself financially anymore because of a health-related disability? Shouldn’t this situation be covered? What about others in very marginalized work situations because of other intermittent and unpredictable disabilities, such as epilepsy or MS? For people with intermittent and unpredictably manifesting disabilities, having no predictability in terms of being sick or well is a significant barrier to employment — especially when so much employment these days is at-will, and good attendance is vitally important to keeping a job!

It seems bizarre that a program meant to help support people with disabilities excludes people with intermittent disabilities, when the intermittent (and unpredictable) nature of certain disabilities is what prevents us from having steady employment in the first place.

  • For what it’s worth, 14 hours a week is 8.33% of a person’s time — that’s 14 hours out of every 128 hours in a week. I go through Remicade-related treatment and withdrawal for, let’s say, 4.5 days out of every 42, which is 10.7% of my time. But this disruption obviously doesn’t count.
Posted in bureaucracy, disability, fatigue, finances, government policy, immune suppression, symptoms, taxes, unpredictability, virus, work | Leave a comment


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 the number of hours I’ve been able to work on average on weekdays when I’m not sick. The number has dropped a lot since I was an undergrad.

Back then, I would often start work at 10 am — after having breakfast and exercising(!) — work until 5 pm or so, cook dinner, and then work again from 7 to 9 pm. That’s about 8.5 hours a day, assuming half an hour for lunch. Sometimes I did other stuff, too, so let’s say I worked 8 hours on average per day.

There were a few years of complete instability pre-diagnosis when I was very ill, and then when I was on varying doses of steroids for a few years. Once I was steadily on Remicade, though, I could still work in archives from 9 to 5 every weekday, with around an hour off for lunch. That’s a 7-hour work day.

When I was working in industry, after I came back from an overwork-induced sick leave, I worked 6 hour days. That schedule was OK for a few years.

During my postdoc, I definitely worked less than that. More than 5 hours a day would wipe me out. I probably averaged around 3.5 or 4 hours per day of work.

These days, one of my jobs has a cap of 14 hours a week. I often can’t even work that many hours before I have to lie down for a while. That’s an average of less than 3 hours per work day! Some days, of course, I feel fine and can do a lot of work. 3 hours of work in a row is a decent day, though, and 5 is a big deal.

Maximum number of consistent hours of work per day (1999-2016)

Maximum number of consistent hours of work per day (1999-2016)

Fatigue and Remicade

I’ve also included the frequencies of my Remicade treatments in this chart. My dose per kg has stayed the same for the entire time. The increased frequency of Remicade treatments is correlated with an increase in Crohn’s problems. In fact, the change from Remicade every 7 weeks to Remicade every 6 weeks took 2 years to get approved.

So is there a correlation between Remicade dose and/or frequency and levels of fatigue? Well — the scientific literature is not clear about it.

There are not many long-term studies of people with Crohn’s on biologics. A lot of studies say they’re long-term, but then they turn out to be for only a year or so!

My gastroenterologist has told me that gastroenterologists are aware that patients who have been on biologics for years tend to get more and more fatigued. It’s not clear, though, whether the fatigue comes from the disease, the treatment, or some combination of the two. But at least now, doctors are recognizing that fatigue is a serious and pervasive symptom in Crohn’s and that more should be done to study it, especially because doctors are really not sure what to do about it. (For instance, Cochrane Reviews has released a protocol for studying interventions for fatigue in Crohn’s, but the actual study has not been done yet).

In the meantime, I’m hoping that the curve in the chart above will level off. I don’t want to stop working, I don’t want to stop living, and fighting fatigue is, well, tiring. This vicious circle is the worst!

Posted in Crohn's research, disability, fatigue, gut problems, Remicade, symptoms, treatment, work | 1 Comment


This story made the news a few months ago but I didn’t get around to posting it until now: a family with a child with Down syndrome was refused permanent residency in Canada because it is believed that the costs associated with caring for the child will be too great for the country to bear.

Of course, Canada can’t afford to pay to take in every person in the world with medical or other needs, but what is going on here? The child in question, Nico Montoya, is part of a family that can physically look after him for most of his life and can financially care for him as well. Nico also qualifies for a the Disability Tax Credit and a Registered Disability Savings Plan (RDSP) that would both help his family save for his future care.

While the situation for the Montoya family still remains unresolved, the case got me thinking.

  1. My health care costs a lot more than care of a person with Down syndrome and no other health issues.
  2. Canada would not let me live here if I weren’t already a citizen.
  3. This sucks.

Also, I can’t believe I haven’t written on the Disability Tax Credit here yet! Brace yourselves. . .

Posted in anger, bias, bureaucracy, disability, finances, frustration, government policy, relationships with family, taxes | 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, and, in my case, was one of the first symptoms I had in the years before I was diagnosed. I had a lot of X-rays and a radioactive dye test in the early 2000s to investigate the reasons for the pain because it was so bad that I could barely walk. I also had an MRI a few years ago to track the baseline inflammation and damage, which is apparently still there even when I feel fine. I was mostly free of this pain for the past 12 years. I’m not sure why it’s coming back, or why it took almost a week after my last Remicade infusion for it to go away this time.

One weird thing about this pain, at least these days, is that it almost always happens only at night. The ice packs are the best way for me to dull it enough for me to go back to sleep when the inflammation wakes me up. Most people would be able to take anti-inflammatory medicines, such as Aspirin, Naproxen, or the like, to settle things down, but I’m allergic to that whole class of drugs (non-steroidal anti-inflammatories, known as NSAIDs). The only painkillers I can use are Tylenol — which is not strong enough to help — and narcotics. The only anti-inflammatories I can take are steroids. Both narcotics and steroids are powerful and have lots of side effects, so they’re not real options for me unless things get really, really bad.

I had my annual physical yesterday and mentioned this issue to my doctor. She wondered whether I am still allergic to NSAIDs because the last time I had them was more than 25 years ago. She referred me to a specialty clinic so that I will be able to try some of the drugs under controlled conditions and see whether they still give me hives and restricted breathing or whether I outgrew this allergy.

I have done these oral challenges before for food allergies, so I’m familiar with the process. One of my friends called it my “personal fear factor” because it involves eating something that has caused a bad reaction in the past. In the case of food allergies, I found out that I’m no longer allergic to two of the foods I tried, at least when they’re cooked (yeah!) but that I’m still allergic to three others. It was worth all those repeat visits to be able to expand my diet. If it turns out that I’m not allergic to even a few NSAIDs, it would make my life a lot easier down the line if I get bad arthritis again.

Posted in allergies, arthritis, diagnostic tests, food, mobility impairment, social life, symptoms, treatment | 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 treatment options currently available are much scarier.

Still, I thought it was worthwhile to talk with my doctors about how to possibly reduce the amount of time I spend having steroid withdrawal. With 100 mg of solucortef, I have 4 days of withdrawal. I almost always get my Remicade on a Thursday afternoon and I can’t return to work until Tuesday morning because I’m too tired and/or muddle-headed to do good work until then. Also, the things I can do on steroid withdrawal weekend are limited in scope because of my withdrawal symptoms. If I could cut a day off withdrawal by lowering my dose of steroids, it could make a big difference to my quality of life.

Now, 100 mg of solucortef is a lot. In fact, most patients on Remicade don’t even get steroid pre-meds — they either get an antihistamine (usually Benadryl) or no pre-meds at all. Many years ago, I had twice tried using only Benadryl as a pre-med, and both times I’d had allergic reactions to Remicade. In both cases, the allergic reactions came on more than 24 hours after the infusion, and consisted of hives and wheezing that lasted for more than a week. I never got those symptoms while on steroids. My GI and I figured that we could drop the dose of steroids and add in some Benadryl and things would be OK. We were very cautious, dropping my steroid dose from 100 mg to 75 mg (a 25% cut) and using 75 mg of Benadryl to make up the difference in allergy suppression. For context, a normal dose of Benadryl is 25 mg. A bad reaction seemed unlikely, because I’d been on steroids and on Benadryl before, though not at the same time. Losing a day to being drowsy on Benadryl but having an extra day of withdrawal-free life seemed like a good trade-off.

We ran the experiment the treatment cycle before last. It took a lot of organization — in fact, the experiment took place a cycle after it was supposed to because of a communications issue between the GI’s office, the Remicade coordinator, and the infusion clinic. Both times it was a big fuss. The last time I had IV Benadryl, after an allergic reaction to the anaesthetics I was given for a colonocopy, I was unable to open my eyes or talk for about 8 hours. It even scared the nurses how long I was out. For the new experimental pre-med protocol, I had to have my boyfriend pick me up from the infusion clinic to take me home in a cab in case I passed out again. (Normally after treatment I’m manic, but I can handle myself well enough to get home or to subsequent social events on my own).

As for the experiment, well, it was not a success.

First off, the nurses at the clinic could not believe that the 75 mg of Benadryl written in my chart was for real. The lead nurse even phoned my Remicade coordinator to confirm it because that dose would knock out a huge person, which I am not.

Within about 20 minutes of receiving the Benadryl pre-med, I got really cold — my fingernails turned blue — but two blankets and a hot tea didn’t seem to help. I was also afraid to hold onto the tea because I could barely sit up, I was so groggy. Even more strangely, I started to twitch and squirm. I couldn’t stay in one position for more than a few seconds. The feeling is hard to describe. It’s almost like being itchy, but without actually feeling an itch — just an uncontrollable urge to be in another position because staying still would be unbearable. The result was that I was rolling on my back kind of like a dog or a horse does on the grass when it’s happy, though I was definitely not happy! Even though I could not really open my eyes for more than a few seconds at a time, I was able to slur out “I think the Benadryl is making me twitchy,” and to be embarrassed about it, because the clinic was full of other people who were all sitting or sleeping quietly in their chairs. The head nurse confirmed that I was having a drug reaction and that this kind of reaction to high doses of Benadryl was something she’d seen before. I’ve been going to the same infusion clinic for 11 years and I had never seen this nurse look so concerned before, though.

The extreme squirminess and freezing cold feeling, as well as the worst of the grogginess, went away after about 3 hours, when my boyfriend came to pick me up. Maybe the time I was knocked out for 8 hours on far less Benadryl was an interaction of the Benadryl and anaesthetic remaining in my system, because I was able to walk and talk, if not very elegantly, when it was time to leave the infusion clinic. Still, I would not have been able to get home on my own.

In the middle of the night, I woke up because I felt like I couldn’t breathe. I was just alert enough to think about using the steroid inhaler on my dresser at the other end of the room, but to dismiss getting up to use it as too much effort. Then I fell back asleep. In retrospect, the lack of logic in my behaviour during what could have been a serious health crisis was pretty scary.

Steroid withdrawal lasted a day less than usual, but I was extremely wheezy for the next week. I would get winded just walking across a room. I also had some joint pain and a bit of a rash — in short, enough symptoms to make me fear that my latent Remicade allergy was not under control.

Before the week was through, I was back on the phone with my GI and Remicade coordinator to tell them what happened and to ensure that I would be able to switch back to my regular treatment protocol for the next time.

So, last treatment, I was back to the pre-med devil I know. Treatment was absolutely mundane, and steroid withdrawal was predictable.

Sometimes I want to hug the devil I know.

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 needs a holiday to recharge every once in a while, and c) sick days are not holidays.

I was not sick for 3 whole weeks in a row! That’s almost 3 weeks in another time zone, right after Remicade and steroids, and it even included several days of hiking! This was the first time that I wore a surgical mask on the airplane both ways and it may have helped in preventing me from catching something. I will definitely be wearing masks again the next time I travel by plane.

Of course, now that I’m back, I’ve got the double whammy of recovering from the active holiday and Remicade wearing off, so I’ve spent about half the days since I got back too fatigued to do anything meaningful, but, damn. I had a holiday and I got to do things I liked (with someone I love) and it was FUN!

Posted in fatigue, immune suppression, partners, relationships, relationships with colleagues, Remicade, social life, steroids, unpredictability, virus, work | Leave a comment

Crohn’s and psoriasis versus virus: nasal edition

Long time no see again. Here I am, off sick again. Last week I worked a total of about 7 hours. This week I’ve done about 1 hour’s work. I am annoyed.

Since the beginning of the year, I’ve caught a few viruses. Last week I had a head cold bad enough that I normally would have delayed my Remicade by a few days or a week. At the same time, though, I have a huge, bloody, nasty patch of psoriasis-turned-ulcer inside my nose that is bothering me quite a bit. I also have psoriasis inside my ear canals, all over the outside of my ears, and on my eyelids, etc. I was uncertain about whether I should postpone the Remicade because I knew that if I did, I would have this cold for longer. I took a chance on it anyway and went in last week.

The nose ulcer and other psoriasis patches are still there, but they seem to be improving a bit. Same with the cold. But I’ve had so little energy the past few days that I think that maybe I should have delayed the Remicade. It’s always a tough call. The longer I have a runny nose and sneeze, the worse the conditions are inside my nose for the ulcer to heal. Then again, I was quite fatigued last week, and it was impossible to say whether the exhaustion came more from running low on Remicade or from the virus.

Everything is still ambiguous, other than the fact that I hate this stuff.

Posted in fatigue, frustration, immune suppression, psoriasis, Remicade, symptoms, ulcers, virus, work | Leave a comment

Feeling anxious?

Some research has just come out of the University of Toronto showing that people with Crohn’s or colitis are two times more likely to have generalized anxiety disorder as people who don’t have inflammatory bowel disease. Here’s the link to the abstract of the original article.

The original article discusses overlaps in the demographics and life experiences of people who tend to have IBD and anxiety: both conditions tend to be associated with chronic pain, depression, being female, and being white. The overlap the researchers found between IBD and anxiety is much higher than would be statistically likely even taking these commonalities into account, though.

One thing that the study doesn’t discuss is causation. It is not clear whether IBD leads to anxiety, and/or whether anxiety and IBD come from the ways a person handles stress, whether medicines for anxiety exacerbate IBD and/or whether medicines for IBD make anxiety worse, and/or the types of stress a person is exposed to in their life, etc. There could be multiple pathways and mechanisms involved, and there might even be vicious circles of causes and effects.

Regardless, the authors talk about how IBD and anxiety are often found together in the same people, and so it’s worth it for medical professionals to think about how this combination negatively affects sufferers and what they can to do to help.

Posted in Crohn's research, disability, statistics, symptoms, treatment | Leave a comment