Hello all

I’ve been away for some time now! I was out of town for many months (long story) and since I’ve been back home I’ve been very busy–I’m getting ready to move, which will be happening next week. I’ll still be in the Vancouver area but I’ve now got a dog (:D) and had to find a new apartment as my current place does not allow pets. That’s a very brief explanation of some of the reasons I’ve been away. Thanks to those who have continued to check in.

For my first post since being back I had hoped to put together something leisurly well thought out, but necessity overrules that desire. I had even hoped to put something together at the beginning of this week–I had put a reminder in my Calendar months ago about this date and the day came, along with a stiff migraine, and the day went, with no post, and so on. Here we are and it’s Friday night. Well, better late than never I thought.

It’s Pain Awareness Week in Canada this week, from November 6-12. The Canadian Pain Society has updated their site this week with a few new publications worth reading regarding Wait times for access to pain treatment in Canada. Their task force study is recommending a maximum 6 month wait time for access to pain treatment. I would agree that this is reasonable as long as the patient has adequate interim care. Otherwise, 6 months can seem like an eternity.

Also new this week is a publication from the American Pain Foundation that is worth looking at: Treatment Options: A Guide For People Living With Pain. You need to register at that link to receive the .pdf file but it’s worth it and they don’t sell your information or anything like that. APF has a great email list/newsletter actually–if you sign up they will email their newsletter to you every week or so.

Again I apologize for the lateness on Canadian Pain Awareness Week, but if you weren’t aware of it before, you are now. Fill someone else in!


Long time…


It's been quite a while since my last entry, and I thought I had better post something so those of you following along here know I'm still around!

I wish I could give you an update on how things are progressing with the pain specialist, but I've had to postpone my next appointment. A particularly nasty migraine hit me the last day I was supposed to go in, and now he's away for a bit so it will be at least a couple more weeks until I see him.

I thought I'd maybe explain a bit more about my migraines. I have what's called chronic daily headache (cdh). I actually really dislike this term because it sounds so much less intense than it actually is, but anyways. The kind of cdh I have is transformed migraine (also called chronic migraine depending on what source you find). This is unrelenting and is present 24 hours a day 7 days a week at varying intensities. Sometimes it's really bad, and sometimes it's just at a low hum, but it's always present. I also get acute episodic migraines on top of that, so the best way I can think of to describe this is that I will get a severe migraine on top of a background headache. I usually get migraine without aura although I do occasionally experience aura.

I'm never really without pain, and as you can imagine some days can be quite difficult, but the opioid treatment helps bring my pain level down to a pretty manageable level a lot of the time. As for how long things have been this way, well, that's a bit complicated. I started having a chronic headache of some sort around age 13, but what kind of headache isn't all that clear. I was told at the time that it was just a tension headache but in retrospect I wonder if it was actually migraine. It was a much lower intensity back then but gradually worsened as the years went on. It's been at this, its worst intensity (and diagnosed as transformed migraine) for somewhere between the last 5 to 6 years. I will get into what the opioid treatment consists of for me exactly and how it affects me soon.

Continue reading ‘Long time…’

I had my first appointment with a pain specialist yesterday even though I've been on opioid treatment for almost a year now. Up until now my neurologist has been treating me, but he wanted me to see this specialist in hopes of maximizing my pain control. The appointment didn't go quite as I had imagined it would. I thought that we would discuss my history, he'd maybe conduct an exam, and then he'd suggest a course of treatment. Sounds reasonable, right?

Apparently not.

It's a long trip to this doctors' office for me–at least an hour each way by bus and train. It costs me about $10 round trip. I had to wait for 2 hours in the waiting room and when I finally got in to see the doctor we discussed my history. He said he might keep me on my current medication (oxycontin) but change the dosing to every 8hrs instead of every 12, or perhaps switch to methadone. So far things sound ok. Then he told me that he would do a phsyical exam and look at taking over prescribing for me at the next appointment.

Why would I need another appointment I asked–I'm right here. He told me that there is no billing code for "chronic pain". That the amount he could bill MSP for the office visit wasn't sufficient to cover the "2 and a half hour work-up" he says he needs for each new patient, so he has them come back several times instead. I was just livid. Now it's going to cost me at least $30 and 3 full afternoons for what should be one doctor's appointment. I wasn't sure who I was angrier at–the doctor, or the Province. So I started researching on the net today.

It's hard to find any indepth information about this or the billing practices of the Ministry of Health, but I was able to find something quite disturbing documenting that the Ministry of Health has determined that chronic pain services are not considered an essential medical service under the Canada Health Act. The Canada Health Act aims to "ensure that all eligible residents of Canada have reasonable access to insured health services on a prepaid basis, without direct charges at the point of service for such services." The key phrase here would be "insured health services".

Insured health services are medically necessary hospital, physician and surgical-dental services provided to insured persons. Here in Canada when you need to go see your family doctor or go to the emergency room, you just go and give your personal health care number and all billing is taken care of. We pay monthly premiums for our provincial health plans based on our income. Apparently, chronic pain is not one of these insured services, at least not in British Columbia?

I can't even believe that's possible when I read it back. I've tried finding more information about it but it's very difficult. I've written letters to both the Provincial and Federal ministers of health and am eager to see what kind of response I get. Hopefully they'll tell me I'm very wrong, but I'm worried. Our health care system has been slowly eroding over the years, and is in danger–we all know that. But to think that this may not be considered medically necessary right now, today, floors me.

I've been thinking all this time that the lack of doctors who specialize in chronic pain here in Canada was due to a reluctance to prescribe opioids. Perhaps part of the reason may be because it's just not at all a viable specialty here.

We cannot change anything unless we accept it.
Condemnation does not liberate, it oppresses.

-C Jung

I’ve been dealing with these headaches and migraines for 23 years now, but I’ve only just started to finally really feel at home in this broken down body. I don’t know exactly why things clicked the way they did, but it feels as though another, perhaps final, piece shifted into place, and a more well-rounded acceptance finally happened.

Acceptance isn’t really an event, it’s a process. I’ve made significant progress over the last several years in accepting this illness and it can be a very difficult thing to do. We’re taught all our lives to push past our limits and better ourselves, and that when something is ‘wrong’ you need to fix it. When you accept you can’t fix what’s ‘wrong’ with you, it can feel like you’re giving up. Nobody wants to feel that way, and many of us fight that path. I stopped fighting it and I’m so glad I did. But still, there was something missing.

I think the latest piece of the puzzle was this last bit of uncertainty that was left, hovering over me making me wonder what was going to become of me. I don’t know for sure if I will ever be able to get back to work, full or part-time. It kept me in this perpetual state of what felt like limbo. Limbo is a very unproductive place. A conversation with my doctor last month finally revealed that no, she does not know if I will ever be able to go back to work. That was the first time that kind of finality about the situation has been approached, much less said out-loud.

All of a sudden I felt like I was relieved of chasing the incredibly elusive someday when things would get back to normal, or at least much better, and I would get back to work. Even though the current state of my health made that day seem eons away, it felt like I was always waiting for it. Limbo. When she told me she didn’t know if I would ever get back to work I thought I’d feel depressed. Instead I felt free!

It doesn’t feel freeing that I cannot work. It’s freeing that if it turns out I cannot go back to work in the future, it no longer feels like a catastrophe. I feel quite fortunate that the last few years have shown me that I can take care of myself. I’ll be alright and I know I’ll find a way to make my life fulfilling if I can’t work.

“This body will constantly betray me” sums up how I used to look at my illnesses and what they were doing to my life. Another migraine was always lurking, ready to pounce and wrestle the day from me. Depression was always just biding its time until my neurotransmitters crapped out again. What I didn’t see was that this body, this psyche, also always carried me through safely to the other side every single time. In the last few years I’ve discovered I have more courage than I ever thought possible.

I don’t feel like a victim anymore. I don’t “suffer from” anything these days. I deal with a couple of illnesses and I’m getting better at it as time goes on.

Today marks National Sleep Awareness Week in the US as well as in Canada. It runs March 27-April 2, 2006, ending just as daylight savings time begins this year. Nobody likes losing an hour of sleep when the clocks turn back, but for chronic pain patients, it can be especially difficult.

Last week I discussed how difficult I find it to sleep sometimes because of my illness, and that it actually does increase my pain when I don't sleep. For me, the reason I have trouble sleeping isn't usually physical pain, but pain itself can cause sleep disturbance as well, and so can our medications. The National Sleep Foundation's Sleep Library outlines how chronic pain interferes with sleep, and what we can do about it.