54 Describing Pain can be a Pain.

But first, how about a very short video of Princess drinking from the ‘fountain’ next to the deck? And how about following that with a picture of our new puppy? She comes home Saturday. Coming soonish, a second video about gardening and plant sales. Stay tuned.

Princess and the Fountain.
Puppy. No name yet.

So, I’ve written about this before, but it’s such an important part of my life right now that I can’t let it go. I, more than most people, understand that social convention governs a great deal of our behaviour. The study of social convention is on the curriculum of most introductory Sociology courses, so my familiarity with it goes a long way back. Convention and habit colour if not drive a lot of human interaction and that is true of our conversations as well as many other types of behaviour. We’ve come up with a number of conventions that, in my mind, work fine, but only if we don’t question them. For instance, asking “How are you?” is not really a query into the state of my health even though it does literally inquire about my wellbeing, doesn’t it? Needless to say, “How you doin’?” is a conventional and very common greeting. It’s not a question inquiring about pain now is it? The conventional answer to this greeting/question is “Fine.” “Hi, how are ya?” seems like the asker is interested in an answer, but mostly, that’s not the case. We’re supposed to say “Fine.” That’s it.

I don’t ask people how they are doing anymore. I mostly just say “Hello,” and get on with a conversation. For a while there, I would answer the question as though it were a real question. “How are you?” “Well, today, not so good,” I’d say. Or I’d say, “It depends.” That is not a satisfactory answer. I can tell that from the look on the asker’s face when I dare utter such an unconventional and unexpected riposte. Sometimes I would carry on with an extended answer, but I knew from the glaze over the asker’s eyes that that wasn’t a satisfying answer. Eventually I would say, “It’s okay, I’m fine.” After that we could all get on with our ‘normal’ lives. The thing is, I deal on a weekly basis with medical personnel of all kinds. Of course, they are as gripped by social convention as the rest of us, but it still throws me off with an oncologist asks me: “How are you, today?”

Just like everyone else, they seem to expect “Fine” as the appropriate answer. Of course, if I were fine, what the hell would I be doing talking to an oncologist about my chemo treatments? Obviously, “fine” is not appropriate as a response under the circumstances, but nor is asking “How are you?”

One time, a few months ago, I had a Zoom type meeting with an oncologist and he asked me “And what can I do for you today?” Well, that question kind of left me speechless, something that is quite an accomplishment if you know me. Of course, it’s a completely appropriate question if I’m in a retail store, walking up to a counter and a clerk asks me “And what can I do for you today?” or “What can I get for you today?” Yes, in that circumstance, this convention works for me, but when an oncologist asks me that question, I get flummoxed. In my usual smart ass way I get tempted to blurt out: “Well, you can tell me I’m cancer-free. How about that doc?” But then, things get awkward and embarrassment takes centre stage and nothing good comes of it.

So, being a sensitive kind of guy and always interested in having conversations go smoothly, my response to the oncologist that day was quite measured. He wasn’t prepared for the appointment, so all he did for the five minutes of the conversation was look at his computer screen, just glancing up every few seconds the camera in an uncomfortable way. He was probably having a bad day. In his line of business, bad days probably happen often, so I don’t take these things personally. In any case, I steered the conversation to my lab results, prognostications about future treatments, and about pain and exhaustion. As an aside, my experience so far is that oncologists don’t like to talk about pain. It seems to make them uncomfortable and fidgety. Tellingly, they leave pain management to GPs.

Well, to finally get to the topic of this post, I can understand their reluctance to talk about pain. It’s a ridiculous thing to talk about. It’s invisible, subjective, and it’s measurement borders on the hilarious. “So, Mr. Albert, on a scale of 1 to 101, how bad is your pain right now? Well, shit. Where do I go from here? Do I just tell them what they want to hear: “Oh, it’s about a 5.” “Okay, thank you, Mr. Albert. So the pain isn’t too bad right now then.” Note that last comment is made as a statement, not as a question. Asked as a question, I could answer something that is more akin to the truth than the bullshit conventional responses we are expected to give at these times. So I could say something like this, bear with me:

Well, at the site of my nephrectomy, the pain varies from 3 to 8 and in duration depending on my activity at the time. It can spike to 9 at times, just not right at this moment. My lower back is fine as long as I don’t move too quickly but that’s because of arthritis and disk degeneration. As you know, my Bortezomib induced peripheral neuropathy (BIPN) is neuralgic pain that is untouched by pain meds designed to deal with muscle or joint aches and pains. Right now, it’s at about a 7. My back starting just below my arms, and my legs down to my knees are burning. My left thigh is painful to the touch. I don’t know how to measure that. It’s a new thing for me. It seems that my BIPN somewhat attenuates during the day and I may actually be able to go to bed with it not bothering me much. At other times it’s excruciating and ridiculous. The pain at my right kidney is nasty at the moment, spiking up to a 7 at times. Lab tests tell us my kidney is fine so it’s the Bortezomib that’s the culprit, it seems.

Anyway, you get the picture. Describing pain simply and easily is impossible for someone with chronic and/or chemo-induced pain. No one can possibly understand how much pain I’m in or how much pain people with inflammatory illnesses and many other conditions suffer. It’s impossible for me to describe the various levels and types of pain I experience daily unless you’ve experienced it yourself in the same contexts that I have. Now, my GP takes my word for it. What else can he do?

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1The 1 to 10 pain scale: I thought I understood it somewhat until I had a talk with a palliative care physician who told me that a 10 is pass out time. I have never passed out from pain as far as I can remember although I may have passed out from deliberately taking a pass out dose of meds on occasion, the only strategy. There were times when I assumed that a 10 was severe pain, but not pass out quality. So, if I said I was at an 8 or 9, that meant that I was sorely distressed by it, but I was tolerating it. A 5 meant that the pain was bad, but not completely distracting. A 4 or below meant I was in some pain, but not too nasty, maybe a nagging, throbbing, but fairly mild headache. After talking to the palliative care doc, I had to revise my scale. Now a 5 is “I’m in pain and it’s no fun. Do something about it!” A 4 is “It still hurts pretty bad!” A 2 might be: “Okay, I can deal with this, but it’s still bugging me.” I haven’t seen a 0 very often, but it does happen periodically for a short time when I’m lying down and not moving at all.

THC and CBD: My Personal Experience.

So, I’ve had chronic pain for decades, at least since the early 1990s. I use acetaminophen regularly, sometimes resorting to T3s and even hydromorphone (oral morphine) on occasions where the pain and discomfort were (are) extreme. I can’t take ibuprofen because I have only one kidney (my left one was removed because of cancer in 2002) although it works the best for me. The other day, as a tribute to our silliness, Carolyn and I went canoeing on Buttle Lake in Strathcona Park. Such a beautiful place, but the wind can come up very strongly. We knew it could do that, but we blithely went out in the canoe anyway, and surely enough we got caught in a very snotty windstorm. We had to paddle at ramming speed for quite a while. My 72 year old body protested on every stroke. A couple of days later things came to a head and I had excruciating pain in my back because of a severe muscle strain (probably a tear, but who’s quibbling). So now I had acute pain competing with my chronic pain for attention. Both were winning at this stage. Enter CBD and THC.

There are lots of websites extolling the virtues of CBD and THC for the treatment of chronic pain, arthritis included. Here is one example from Medical News Today. WebMD is what I judge to be a fairly reliable source of internet-based medical information. Like this article in WebMD argues, consulting a physician is always important before using CBD as a medicine.

Great, so in the interests of attempting to alleviate some of my chronic pain, and being desperate, I decided to try using CBD and THC. To that end I had an MD ( a locum in my medical clinic) refer me to a group of health care professionals (physicians, nurses and therapists) at a clinic not far from my home. I figured I’d be a test subject although I know very well that a one person study is not a study at all. I was called shortly thereafter to a consultation with a physician who has experience with using CBD and THC medicinally. I was prescribed the use of CBD daily for chronic pain and THC at night to help me sleep through the night. On the physician’s recommendation I bought a 40 MG vial of CBD and a 40 MG vial of THC from what they said was a reputable manufacturer. So far, I’ve found that the manufacturer has been very careful to sell me only what I have a prescription for. The physician I saw prepared for me a sheet of instructions for taking CBD and THC. Since then, I’ve had regular calls from the clinic inquiring as to my experience with the products. I completed my first course of using CBD and THC a while back and have recently picked up my second prescription.

I really hoped that CBD and THC would work for me. T3s are fine, but harsh on the stomach. The THC is fine. It gets me stoned to some extent so I tried to take it only at nighttime. Doing what I do in my daily life, I can’t be stoned all the time. I need a clear(ish) head. I have enough trouble with brain fog as it is because of my immune disease. I don’t want to add to it with meds that don’t work all that well. I don’t think CBD worked for me at all, ever. I kept giving it a shot paying very close attention to my symptoms but I felt no improvement.

After I injured myself canoeing, I saw an MD again. I still had a few T3s left so I wasn’t too concerned. Well, the T3s ran out really fast. At one point when my pain was pushing 9.5 out of 10, I took T3s, up to 4 at a time and washed that down with a ml of CBD and another of THC. I also had some alcohol to really wash it down. I was then able to sleep, but I couldn’t keep that insanity up for long. So, back to the my regular medical clinic for some more T3s.

I also went back to the other clinic, the one that prescribed the CBD and THC for me. I had a consultation with an MD there and we basically agreed that CBD was not going to work for me. Clearly, it doesn’t work for everybody. I may still try using THC, but only at bedtime, and only if I’m feeling I need it for putting me to sleep. I may cease taking it altogether.

I’m quite sad about this because I had high expectations. At the moment all I can do to keep my pain levels down is to do very little of anything. Obviously I can write, but walking is even difficult and going out to socialize is increasingly unpleasant. Damn it, I love to socialize! I still go out and do volunteer work and maybe go to a restaurant now and again, but I have to rest frequently.

I knew that CBD and THC had not been tested using double-blind studies, but I hoped they would work anyway. Unfortunately for me, that wasn’t (and isn’t) the case. I sincerely hope they work for you.

Ship (a canoe, really) of fools!

Ship of Fools.

Alright, I have a confession to make. I’m not always the most reasonable person around. The photo above is of our fifty-year-old, sixteen foot “Huron” canoe outfitted with outriggers, a mast and sail, along with a deep-cycle battery and an electric motor, and paddles of course. First off, it’s a canoe, not a sailboat, but it did sail very well in moderate to somewhat higher winds. It’s tied here to a stump on Buttle Lake near Ralph River Provincial Campground where we recently spent a few days. The lake was relatively calm. We probably paddled and used the motor to get to this spot not far away from the campground. 

On another day, however, we went out in relative calm and while we were out there, the wind blew up. It often does in the afternoons on Buttle Lake. We sailed very quickly to a spot down the lake called Auger Point, a three-kilometre run. Getting back from there was anything but pleasant. We should have known better. Happily, we had the motor that I cranked to full power but even with that we had to paddle at ramming speed to get back to the river mouth where we kept the boat tied up, maybe a kilometre to our camp site. That was one tiring run home. It would have been different had we been able to sail closer to the wind, but with the sail we had and the lack of a leeboard, we were in for a rough upwind fight. Carolyn and I are experienced canoeists and at no time did I feel like we were in trouble, but paddling as hard as we could was feasible even ten years ago, not so much now that I’m 72 and Carolyn is handicapped by arthritis in her hands. Still, we are strong paddlers and we made it without swearing and berating ourselves too much. Now, having done this once and also having promised ourselves to never do it again, what do we do? We go out there again on another day and get caught in the snottiest wind and wave conditions I think I’ve ever seen on the lake. What can I say? Again, we went out on a day that promised to be benign so we headed up the lake looking for a nice place to swim. We paddled down to a bay maybe four kilometers from the campground but there was someone on the beach playing music and fishing from shore. So, we headed down and across the lake to a bay still some distance from the campground where we knew we could skinny dip. As we enjoyed the beautiful lake water and the most enjoyable swim, the lake decided to turn against us, and the wind started blowing strongly from the north. We set out with the motor at half throttle, but we soon had to up that to full throttle and full on paddle to boot. Well, we’ve had some situations in the past where we paddled as hard as we could against a wind without making much headway at all. But we were young then and had much more energy and stamina than we do now. Coming around the point close to the campground we were hit with two-foot chop. That was fine as long as we were able to paddle directly into the wind, but that was not possible as we rounded the point moving east towards the campground. We were abreast to the wind, paddling as hard as we could with the assistance of the motor, and we were being beaten hard by the waves to the point where we started taking on water from the port side. Sensing that we probably couldn’t make it back to the river’s mouth where we would have preferred to leave the boat, we turned the boat downwind and took her into shore on a muddy, unpleasant part of the lakeshore, but still within easy walking distance to our campsite. That’s where she stayed overnight. 

The next morning, we took her around to the river’s mouth. We were exhausted, especially me, and I hurt everywhere. Silly us. After that episode, we got reasonable and didn’t do it again. Actually, we got our best swim of our stay on Buttle Lake a couple of days later with no trouble. 

The family joined us last Thursday and that was great, but I felt a pain in my right side and shoulder that was getting worse and worse. There’s no doubt in my mind that fighting the extreme winds on Buttle not once but twice contributed significantly to my injury. I was definitely injured. The pain got so bad (pushing 9.5 out of 10) that I was very relieved to know that I had some T3s in my toiletry bag. I took two and felt hardly any relief. Later, I took two more along with some CBD and THC (I have a prescription for them). I managed to sleep fitfully although some people might suggest I was not sleeping as much as in an altered state of mind. The next day the pain had not attenuated at all, and we had to leave the campsite and head home. I couldn’t help pack up at all and my son-in-law was conscripted to drive the truck home towing our old eighteen-foot Holidaire trailer. I could barely sit still on the way home, having to shift my weight often to try to lessen the pain. The drive home was uneventful, but I still hurt, easily pushing 6 out of 10. 

After being home for a bit and still at the end of my rope trying to deal with pain that prevented me from even taking a deep breath, I took two ibuprophen, went to bed for an hour or so and got up feeling fine. A miraculous recovery! I would have taken ibuprophen a lot earlier, but I was counselled in 2002 after my left kidney was removed because of cancer that I should avoid anti-inflammatory meds. I didn’t take any until this past weekend and just took two more a few minutes ago. The meds are still keeping the pain at bay, but I’m loathe to keep taking anti-inflammatory meds like ibuprophen because they are hard on the kidneys. So, tomorrow I call my doctor and make an appointment to see if there are any alternatives to ibuprophen I can take that might help mitigate acute pain. I’m used to chronic pain, but the acute pain brought on by the foolishness in our canoe was untouched by acetaminophen, even with codeine, and even supplemented with CBD and THC. My problem seemed to me clearly one of muscular inflammation. It’s clear that I need a solution to deal with acute pain because I can’t promise to always be reasonable in the future. My family was extremely supportive, and I love it for that, but I feel that I need to pull my own weight too. I will not always have my family there to support me if I get into unreasonable trouble again. I need good meds too!