Maybe tomorrow I’ll be in less pain. I have a lot to write about my recent experience with pain but my neck pain is so bad right now I can’t look down and can barely move it from side to side. Tomorrow, I’ll try again. The docs found in a recent CT scan that I have severe disk degeneration in my neck. ‘They’ say that’s what causing my extreme pain at the moment and the pain cannot be attenuated by pain killers, including hydromorphone. I guess that cancer wasn’t enough for me.
In the meantime, as a bit of a primer, I’m reposting a blog post from earlier this year on the subject of pain.
The Conundrum of Pain…and Suffering: Part 1.
I’ve been thinking about writing this piece for a long time. It’s only now that I figured out how I wanted to organize my narrative. It’s complicated because there are so many aspects and approaches to both pain and suffering. The medical profession (and the medical ‘industry’) has its clear claim on the alleviation of pain and suffering. Philosophers and psychologists have also long been interested in the topic. Sociologists too. I won’t be quoting any sources this time. I will leave that for subsequent posts where I deal with specific scholarly and popular approaches to pain and suffering. To start, I want to suggest why I find pain and suffering of interesting.
Pain is not something that can be empirically determined. It cannot be objectively measured as far as I know. If you know otherwise, please let me know. That’s why doctors (MDs, that is) sometimes ask you: “On a scale of 1 to 10, how bad is your pain right now?” You answer: “Gee, I don’t know.” And you just throw out a number because it’s such a hard question to answer. You don’t want to say 2 because then what the hell are they doing in their office? You don’t want to say 10 unless you’re writhing in pain on the floor by the examination table. A 7 is usually good for attracting attention without getting ‘the look’. Still, your doctor may be wary.
You can look at anyone, I don’t care whether they have just been badly damaged in a car crash, they have arthritis, psoriasis, lumbago (don’t you just love that word?), and/or gout. You can impute that they’re in pain, but it’s not visible. Pain is not visible. You cannot see pain. It hides in the crevices, nooks and crannies of your body but nobody can see it so how do we know it’s really there? We may see a person with a massive slashing knife wound to the chest and we assume that person is in pain, but we never see the pain so we don’t have any way of determining its intensity or how much shock or other factors have mitigated or attenuated it.
Recently we (Carolyn and I) spent some time in a hospital emergency department because Carolyn needed an emergency appendectomy. All is much better now, but it was obvious that the medical staff was at a loss the first time we went to emerg (that’s what they call it, you know) to figure out what the cause of Carolyn’s pain might be. They may have even wondered whether or not her pain was psychosomatic. They poked and prodded her, took blood and did a CT scan. Nothing of significance was found. I don’t know what the staff thought at the time. They told her she was a conundrum and looked great on paper. In any case, we were sent home with instructions to take antibiotics, pain killers, etc. When over the next few days the pain got worse for Carolyn we went back to emerg after Carolyn was told by her family doctor that she had a classic case of appendicitis. After a few more hours sitting in waiting rooms and getting more tests including a second CT scan, it was determined that indeed, Carolyn had acute appendicitis (which we subsequently found out was evident on the first CT scan). Time for surgery for a ruptured appendix. This entire scenario was upsetting and did not need to happen. Surgery after our first visit would have been routine and we probably would have come home the same night. As it stood, Carolyn spent two days in the hospital recovering. Now, this was all nasty and everything, but I have questions about the presence of pain as Carolyn described it and the CT scan that showed an inflamed appendix. Did they operate because of the pain or because of the CT scan? The CT scan confirmed that there was an organic problem and the assumption that Carolyn was in pain may or may not have factored into the decision to operate. I’m not sure how that works.
Pain is not something that is determined objectively so how are medical personnel to know whether a person is in pain or is faking it? There are people out there who crave attention (or drugs) and will fake medical symptoms to get it. There are people who have what’s called indeterminate illnesses or diseases of indeterminate etiology like fibromyalgia. Some medical doctors and others associated with medicine still don’t believe that fibromyalgia is a thing. They argue that if only you’d relax, your pain would go away…that’s if you ever really had pain…wink, wink, nudge, nudge. It’s a tough call because pain is not visible. People may be grimacing and walking abnormally, and we assume they’re in pain, but we just don’t know for sure. There is probably more attention given to determining the etiology of pain in regular and emergency medicine than anything else. Guesswork has to play a major role along with targeted questioning. “Does it hurt here? No. Here? No. Then what about here? Okay, here then! Well then, we’ll just peel you off the ceiling now and figure out what to do for you. You will definitely need some painkilling meds. Get that IV hooked up. It’s certainly true that pain alone cannot trigger surgery. Just because I tell a doctor I’m in pain, that doesn’t justify her throwing me straight into the operating room. Subjective reports of pain must be supported by evidence of organic abnormality, or is it the other way around?
Killing pain is huge business. We don’t seem to like pain a lot unless we have a personality disorder and we’re masochistic. Big Pharma’s bread and butter is in killing pain. Opioids are huge business. They are used medically to mitigate physical pain symptoms, but they are also used on the street to deal with ‘psychic’ pain. [This is a topic for another blog post.]
Strangely enough, we often put ourselves through a lot of pain and suffering to accomplish a task that we’ve imposed on ourselves like running a marathon. Why run a marathon only to feel intense pain during and afterwards? What drives us to doing this kind of thing? [This is a topic for yet another blog post.]
Then, there are people, a very small minority, who cannot feel physical pain at all. They can put their hand on a hot stove element and not know that they are in trouble until they smell flesh burning. That’s not a scenario that appeals to me at all. In view of this it’s common to consider that pain has benefits in an evolutionary sense. It’s probably a damn good thing that we do feel pain. Too bad our pain is not obvious to others in an objective way. It would make life a lot less painful for a lot of us.
[Stay tuned. I learned today about myeloma and pain. I also learned that my kidney is fine and I can have beer and wine again.]
Roger Albert - Always a Sociologist: Now Living With Myeloma 
I feel for you Roger and you too Carolyn. I’ve seen my late husband go through the most unbearable pain that I have known (to me). Nerve pain. As you know, he was an incomplete quadriplegic which meant he had sensation below his injured spinal cord which was C4, 5 and 6. I’ve seen how the medical system said… we have this new drug, (opioid), that will help you, here you go. It helped.. then I thought he was taking too much. How do I know what real pain is? The doctor said…. He is an addict now.. that is a fact. He needs this medication for the rest of his life.
Years go by, still in pain, but tolerable? and the doctors decide there is an Opioid crisis? Doctors cut back the dose and look at him as a different type of “addict”. He goes into a neck spasm, which often I had to call an ambulance for, we go go to emergency, he yells, I yell, please give him anything, adivan, something to help him calm down and ease the spasms. The doctors act like it’s nothing new. They walk by, the nurses walk by…. (I don’t blame them in some regards)… but the advice I’m given is to put more salt in his diet. REALLY!!!!! Finally they give him his one adivan and other meds and his body relaxes and he falls asleep… he is at rest now.
I guess I’m writing this because your words resinate with me so very much. I so glad you can write about your experience right now. Pain is different for everyone of course. Some are very sensitive to it, some can tolerate SO much and still not find relief.
He would have loved to have the pain of a marathon.. the pain is much different in that you are not suffering in a negative way.. you are suffering in a positive way in that you have accomplished something.
I am so glad… that you can have beer and wine again.. lots of love to both of you!
Wishing you strength each day.
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Hi Tanya. I’m so sorry to read about your husband. Unfortunately, I think that in a lot of ways ERs are microcosms of our whole culture.The way he was treated is unconscionable. We lodged a complaint with the BC College of Physicians and Surgeons about a radiologist at the hospital after Carolyn’s appendicitis episode. He had misread her CT scan and so the people in ER sent her home with full blown appendicitis. Four days later she was back to ER but this time one of my former students who is now an ER doctor took over and things started moving. Still, it was hours before she got surgery around midnight. That radiologist has moved out of province now. A small victory based on personal connections. Like I said, a microcosm of our whole society.
Fortunately I am able to write this today because the pain in my neck has subsided some and I’m off the opioids except at night. I’ll put up with some pain to avoid too much of the brain fog, hallucinations, and other downsides that go with too much hydromorphone. I don’t give a shit about addiction. I’ve got cancer, back pain that is trying to ruin my quality of life, I’m 72 and I can see the exit door just over there so I have no illusions. The medical system does though. As you write, they are concerned with my dosage because I could become addicted. I just laughed at them in the ER in Victoria when they said that. My own doctor is fine with me getting addicted but he doesn’t really know how to deal with dosages or anything and is not about to learn. The ‘controlled substances’ prescriptions doctors have to fill out criminalizes the whole process so GPs are really getting gun shy about prescribing opioids. It’s all so fucked up. So, I’ll keep writing about it. It’s what I do. I just spoke with my daughter who has done a lot of front line work and is now Policy Director of the BC Non-Profit Housing Association and she says that the ‘opioid crisis’ is forcing people with legitimate pain issues to go find meds elsewhere. I know someone who has a lot of pain and is getting the usual bullshit treatment for it. She says she knows of a good patch of mushrooms on a field close by. She just needs someone to help pick them. She says: “I’ll dry them!” Well, mushrooms are fine, and I would go there in a heartbeat but there are lots of risks involved too. In any case, I need to eat my breakfast. Thank you so my for this comment. It inspires me while it upsets me. I’d like to hear more.
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By the way, I didn’t ask you if you minded having your post made public. That’s something I need to fix somewhere on my blog. I’m not sure where, but I feel people need to have that option available to them.
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Yeah to the beer and wine! I know the pain number conundrum all too well. My back surgeon calls me a “high functioner” despite a self-reported pain number of 5 because I can ride my bike 10 miles and continue to limp to the dog park and back. This makes me feel like a mainstreamed third grader. He said he would be happy to operate any time, but when I walked in crying he insisted that now is the hour. But I am still a 6. My face just stopped covering for my body
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Unfortunately my face has been covering for my body too, but it may be that people should be looking elsewhere besides my face…like somewhere behind my face where the truth lives. It’s hard to get there though because our faces are such great covers and don’t like to be lost.
I hope you get your much-needed surgery soon, Marilyn. Riding your bike had got to bring you great pleasure.
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Bike rides make me feel human and independent. Hope the beer and writing do the same for you Rog
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They do, Marilyn. I don’t drink much beer, but a pint now and then is great. I do miss my long walks with Carolyn, but my writing keeps me sane and now I’m on a mission to turn around a decision by the provincial ministry of health via the Vancouver Island Health Authority to concentrate all pathology work in Victoria, 225 kilometres away. That’s a travesty and that impending decision needs to be stopped. They are giving all this pathology work to a corporation formed and owned by a group of Victoria pathologists who have apparently lost their Hippocratic oaths. A good battle is always good for the blood!
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Hi Roger….sorry to hear of your diagnosis. Treatments are evolving so I hope you can reach a solution. Donn, our oldest also had a burst appendix and the resulting hurried operation. It too was very painful. Really enjoying your thoughts on your blog.
Bill
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Thanks, Bill. I appreciate it. We were very frustrated by the treatment Carolyn got in the ER the first time we were there. On the day the surgery happened some of my former students were on staff and things went very differently although progress was still very slow. One of my former students is an OR nurse at the hospital too so Carolyn was in good hands the whole way through. In my case, myeloma is incurable so far but as you say, progress is being made every day. It’s a moving target. Still, I have no illusions about my mortality. As I wrote today in my blog I can see the exit door on the other side of the bright white light over there but I can’t reach the knob yet…so I still have some time. Besides, I’m on a mission now and I don’t have much time so watch out politicians.
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Now I know what you meant by watch out politicians. Do you have other irons ready to strike besides the centralization of medical services?
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It’s not so much centralization I’m interested in. Rather, I’d like to see some accountability on the part of the Health Authorities to the people who pay their salaries. As it is, VIHA is really a buffer between our elected officials and us. It has power that comes to it via provincial legislation brought in by the NDP government in 1996. The BC government, Liberal or NDP, has consistency looked to California for models of health care delivery. I’m curious about what California is doing these days in terms of the delivery of medical care.
The government has occasionally blamed VIHA for bad decisions when in fact it has the power to make changes. The buck stops with the politicians. I’ve had discussions with my MLA at parties and events and he’s told me that the NDP government has inherited a huge deficit created by the previous Liberal Government but hidden under layers of obfuscation using BC Hydro and ICBC and their borrowing power. I’m about to begin reading ViHA annual reports but also Health Ministry reports. After I’m satisfied I know more than they do which shouldn’t take too long I’ll get on the phone and call the premier and all the Island MLAs. I’ll follow that up with letters and maybe even a demonstration in front of the local hospital. I might even get arrested!
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You and Jane Fonda. I see your point of course, but have noticed that the old concept of “accountability” seems to have mutated these days in all levels of public services whatever the government in power. Not talking about a “deep state” but a deeply bureaucratized state which has forgotten that they are there to serve and care for their “clients”. Instead, we are seen as an impediment to the efficiency of job performance slowing down the “service”. Good luck. I shall watch on TV
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Your observations are spot on, Marilyn. Who knows, we very likely will get on TV. There are people here already willing to mobilize. I need to regain some strength before I can do much, but I’m sure it will happen soon enough. In the meantime, I have a lot of research to do.
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I shall be watching. Such itches must be scratched. If unchecked, the contagion will only continue to spread.
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