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 not happen.

Instead, I felt worse and worse over the weekend. By the Monday, I went to see my doctor. I was wincing in pain with every step; it felt like I was being kicked in the diaphragm. And I had a weird rash that looked and felt like a cluster of really nasty, deep-seated zits on my left side. They reminded me of erythema nodosum, which I hadn’t had since 2002, but they weren’t on my legs, and they were also itchy. My doctor tested me for shingles. The positive test came back the next day.

I was put on an antiviral to stop the shingles from getting worse. So far, it is working, but it has side effects for me: mania and restlessness. It’s very much like steroid mania, but without the water retention or the same level of desire to eat large quantities of bland food that I get from steroids. But the sleep deprivation is really quite something. The second night I was on this antiviral, I couldn’t get to sleep until 7 am — around the time that I usually wake up. I have to be on this stuff for at least 10 days.

Forget going back to work this week, week 2 of this infection. Even now that I can walk normally again, I’m so scatterbrained from the antiviral that there would be no point, and even something as simple as an hour of grocery shopping wears me right out. I’m not sure how much of the fatigue this time is shingles, how much is the antiviral for the shingles, how much of it is Remicade wearing off, and how much of it is sheer sleep deprivation. I’m worried about how I’m going to fare when I don’t have to take the antiviral any more. I have the feeling I probably won’t be able to work for the rest of the month because I’ll be catching up on sleep, then hit with Crohn’s-related fatigue as the last of the Remicade wears off, and then, when I get my dose of Remicade (at least 1 week late, to ensure that all the shingles virus is gone or at least behaving itself by then), I’ll go through the regular process of steroid mania and withdrawal.

One viral infection = a month of lost wages.

Also, since I haven’t been able to leave my place except for short visits to the doctor’s or the grocery store for almost 2 weeks at this point,  I’ve been gaining weight because I can’t exercise. I feel bad about that, too.

So frustrating.

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 kung pao chicken (i.e. with mushrooms instead of chicken).

Cue gut insanity for the next week. It was painful and exhausting, but I wasn’t scared because I knew that it would settle down with Remicade. That said the fatigue was worse than I’d experienced in years, and I couldn’t work at all for most of the week. Two days before Remicade, I slept 14 hours. The day before, I slept 16 hours and could have slept more. Inflammation takes a lot out of a person.

I was very lucky that the work I was supposed to do this week was reallocated to somebody else because there was no way I could have done it.

In the middle of all this, I got a call from the hospital pharmacy that dispenses my Remicade that the EAP had not approved me for treatment yet, so I might have to pay $4,200 out of pocket in a matter of days. Two days later, and after much phone tag with my Remicade coordinator, my coordinator confirmed that she had been able to arrange compassionate pricing for me from Janssen for the next two cycles; the hope is that the EAP will be able to get through its backlog within the next 2 months. (Janssen would then back-bill the province for the cost of the drug). That said, the last time this happened to me was July 2016, and the EAP backlog back then was 4 months, so I’m still uneasy.

I don’t know how many patients are affected by the backlog this time — probably hundreds. That’s hundreds of people scrambling to figure out how they’ll be able to afford thousands of dollars each, per treatment, on very short notice. Hundreds of people looking into borrowing from friends and family, or maxing out their credit cards, or, at the very least, eating into their savings. And not everyone is going to be covered by compassionate pricing initiatives.

I’m thinking that I should contact the Ombudsman’s office again once I get my energy back. These systemic problems need to be fixed.

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

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 hiking and crafts.

The last cycle was another partially ineffective one. On top of that, I had a virus at the beginning that dragged for two weeks, and then went to a cottage, where allergy issues caused my psoriasis to go crazy. (My ear canals were the worst they’ve ever been, oozing blood and plasma, and I even developed a patch of psoriasis in my belly button!)

Now I’ve got a little less than a week to go and I can’t wait for my medicine. I’m eating only soft things, but I can feel meals scraping along my intestines with enough intensity to wake me up at night. I have been lucky that work has not been intense this past week because I’ve spent a lot of it asleep or spaced out.

F this.

 

Posted in allergies, exercise, fatigue, food, frustration, gut problems, psoriasis, social life, treatment, virus, work | Leave a comment

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 fatigue can be:

  • like being drunk without the buzz (feeling lightheaded and being clumsy)
  • like jet lag/having pulled an all-nighter (feeling drowsy, wanting to lie down and sleep, doing everything more slowly than usual)
  • inability to concentrate or follow complex reasoning, losing track of conversations or movie plots
  • inability to focus, being easily distracted, losing things, forgetting obligations
  • needing to avoid visual and audio stimulation for a while, even if not sleepy
  • forgetting words
  • having difficulty making decisions, taking far longer than normal to do things

A lot of these symptoms seem to be common to people who have had concussions. In fact, I’ve only been able to articulate the extent of some of these symptoms after I had a conversation with someone who’s had a concussion. When I heard their symptoms, I realized that many of them applied to me as well.

I will have to mention this to my doctor the next time I have an appointment. I think that “fatigue” may not mean the same thing to her as it means to me.

 

Posted in difficulty concentrating, fatigue, relationships with colleagues, relationships with medical professionals | 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 haven’t had treatment at all. I really hope I’ll start to feel more energetic soon, because this is depressing.

Posted in biologics, difficulty concentrating, disability, fatigue, frustration, psoriasis, Remicade, treatment, ulcers, work | Leave a comment

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 later, the nurse told me that there was no information in my electronic records and that my paper records (pre-2010) had been lost.

Last week, a week after I was told my medical records were lost, I called the clinic back and asked for an update on the status of the search for my files.

The nurse I had originally spoken with called me back. She told me that I had, in fact, had a mumps titre, as well as titres for about 8 other things, in 2015, when I’d done the measles titre — i.e. she’d lied earlier when she said there was nothing in my electronic files about titres or mumps; she probably hadn’t checked at all. I then asked her about the paper records. The nurse told me not to worry about them because they’re fine but that they were in storage and “cannot be retrieved.” I asked her what would happen if the doctor needed something from those years, and she said that my doctor had everything she needs in my electronic files — again, obviously false. Then I asked if I could see my paper files for myself to confirm that they do indeed exist. Again, the nurse told me that the files “cannot be retrieved.” Long story short, I asked to be put in touch with someone else whose job it is to retrieve old medical files, and she said that it can’t be done and/or she doesn’t even know who to ask. In other words, unadulterated bullshit, because the files either exist and can be retrieved or do not exist, and I also have a legal right to see my own medical records.

Some friends recommended that I contact the clinic’s office manager to lodge a complaint. I did; the office manager was horrified to hear how the nurse had handled the situation and apologized on behalf of the clinic. She spontaneously arranged for a patient advocate to have all my paper records photocopied and mailed to me (!), and gave me both her and the patient advocate’s direct phone numbers and email addresses. The office manager also told me that she’d have a conversation with the nurse and get back to me about it soon. I was very pleased that she took my complaint seriously because this sort of thing erodes trust in the medical profession and I don’t want this kind of crap to happen to other people.

I suspect that this is not the first instance of bad behaviour from this nurse. I hope it’s the last.

Posted in bureaucracy, medical records, relationships with medical professionals | 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 the vaccines I had in the past 20+ years.

The nurse called me back today to say that they don’t have any records for me before 2010. I had changed doctors in 2010 when my old GP retired and personally photocopied and hand-delivered my records from that office to the new office, so they should have had them.

It’s hard to express how frustrated, disappointed and outright angry I am that those records are missing. The missing years cover my diagnosis with Crohn’s as well as the 4 years before that when I had undergone every test for arthritis, Lupus, tropical diseases, and countless scans of various kinds, dislocated my hips 3 times, etc. They are missing the years when I received probably about 10 different kinds of vaccines before being put on Remicade.

I called my former doctor’s office, which, luckily, still exists — it’s run by different doctors now. The receptionist was sympathetic. She found out that my former doctor is on holiday; when she comes back in about a month, they’ll see about getting my old records out of the storage facility where they’re being kept.

This time, I’ll keep a set of photocopies (or scans) for myself.

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

What? I’m not sick?

I should probably be knocking wood here, but I haven’t been sick for almost 2 months, which must be some kind of record.

Unfortunately, my partner has been sick with a virus for almost two weeks now. We haven’t been able to see each other because we’re both afraid that I’ll catch whatever it is and get even sicker than he is now. I made him some chicken soup and left it on his doorstep. I wish I could do more to help him.

It’s hard to watch someone not doing well and feel unable to help. I wonder how often my friends and family feel this way about me.

Posted in immune suppression, partners, relationships, virus | 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 have to bail because of poor health. Aside from not being able to have a full-time job and having to miss out on many social occasions, there’s also the guilt that comes with the part of our culture that says to push on through illness and to just try harder — everything will work out in the end.

No, it won’t.

I spent years working myself into the ground, working so hard to disprove people who thought I was making symptoms up or trying to avoid work, that I ended up much sicker, and sick more often, than I now know I could have been.

In order to minimize the amount of time I spend being sick takes a lot of effort. I have to plan certain aspects of my life not only around when I’m going to get treatment, but around statistical calculations in my head about how frequently I’m going to be unable to work as my medicine wears off, and how likely it is that I’ll get sick for x number of days between now and some time in the future. I have to pay close attention — while avoiding getting too obsessive! — to how I’m feeling mentally and physically, and what I eat, and how much exercise I get, and how much sleep I get over periods of hours, days, and weeks. And I have to juggle my erratic freelance work schedule and my partner’s schedule on top of all of this, too. In other words, I have to be very organized, very flexible, and on top of many things all the time to get anything done.

It also takes a certain amount of effort to target paid work that brings in maximum income for minimal hours, with the tradeoff that, during the hours I work, I must put in a lot of effort and concentration. So when I’m not at work, I’m often “at work” recovering — so that I can continue to work.

And still, not being able to stick to a regular schedule makes me feel like less of a person. The narrative goes that anyone who can’t put in the hours, or show up on time and on a regular basis, is disorganized and/or lazy. I’m neither disorganized nor lazy, but I think that people are going to look at my lack of consistency in scheduling and think that I am.

People familiar with my work but not my personal life often remark that I should have a more prestigious job than I have — and they may not mean to imply that I’m a failure, but the inference is easy to make.

Years of having my health concerns brushed aside and being told I was a malingerer, while I was suffering from obvious Crohn’s symptoms, feed into this idea that I’m not really *that* sick. Plus, I look normal. I look especially normal on the days that I’m well enough to be out and about. When I’m not feeling well, I’m at home resting or sleeping. Only the people closest to me know what’s really going on. And those people know that I would rather have the energy to get outside and get things done than to have enforced quiet time. But only by slowing down and learning to recharge when I have to can I have a chance to work and play the way I want to.

If society’s ideal is a workhorse, I’ll just have to get used to being a cat. You can find me over here, asleep in a tree.

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