itterama and I had a casual chat about pain, the worst topic of ’em all. The comedic punch of that does not pass by me as I think about how much we gave to the world today. Sure, we’re both not medically trained in pain medicine to a formal degree, but itty’s dealt with pain since May 2010 and I’ve dealt with pain since April 2020. We might be more experts than academic-only doctors guessing about pain.
I wanted to talk about the totality of pain in everything it manifested.
While I wouldn’t say that, as a final content warning, ok, here goes, suicide isn’t primarily caused by pain, I believe that pain-prompted suicide is a larger problem than we might think. What is painful to one person could be fine for someone else, so it’s completely subjective, but it’s the role of doctors to do the best they can to help their patients. If they’re taking on too many patients, well, that’s not the patient’s problem, but what will happen as I have experienced is that doctors forced me into feeling like I was a piece of shit garbage human being for wanting to get better.
Yesterday’s phone call with my new doctor probably worked because of my advocacy.
I told the doctor that I wanted to become a productive member of society again, which I am currently not. Who do I blame for that? I don’t blame myself for that. As much as I am a person willing to accept blame for problems I’ve caused, the 20+ doctors I’ve had over the course of my 15+-month journey through what was just a minor spine problem – compared to my life-altered spine pain now – could have been reduced or even mitigated with the help of enough doctors that knew what to do to resolve my case. As we talked about at length, itty’s story is much like mine, but his is worse. They had to continue his military training involving further damaging their shoulder, frequently, for years, with minimal medical intervention.
What a fucking nightmare.
Our lives have been forever changed by our journeys through pain. Mine might be resolved with this diagnosis I’ll read about more over the next few days before my appointment in a few days, whereas itty’s might never be resolved. This shouldn’t happen. One common thing I see is publicly slandering doctors on review websites, but I don’t see that as being much more effective than throwing toilet paper at their offices. What can really change is complaining to your insurance company, as I did, with two doctors. I received two typed-up letters confirming that they had received the complaints. One, which I detailed at length and read a section of the phone call where we talked about pain, I told the insurance company that this doctor was not educated about pain management.
The insurance company was interested in doing research on that claim.
If you’ve ever been treated like shit by a doctor, or anyone else, well, everyone has a boss that has a source of income. I suppose I even do myself, so I am not above this myself – especially when/if I return back to working, but even if I become a full-time writer, my boss would be my audience and the people that advocate for me. So if someone like a doctor doesn’t give you the time of day, or treats you poorly, remember that they are not a walking god whose presence you should be honored to be in, no matter how much your healthcare system might imply that to be the only perspective to take.
There are more options than to give up.
It’s tough but it’s not impossible to find long-term relief for I would assume even the worst pains. I won’t talk for itterama here, because his situation has lasted much longer than mine, but if I can find relief, then I can work toward helping others, maybe including themself, find relief. It’s possible that I could be dealing with pain for the rest of my life, and there are many times where I felt like giving up on dealing with it, but it doesn’t have to be that way. It’s rough to balance through this because it does require much work that we have to take on ourselves, but I think if both the patient and doctor can both work for true patient care, then we can make progress.
If the doctor bails as soon as it gets a little hard, that’s a bad doctor.
A good doctor would almost be willing to take on difficult cases like ours as academic studies outside of textbooks. I imagine that medical books involve many hypothetical or extreme examples, so having a live patient to troubleshoot should be exciting for a doctor truly looking to solve puzzles and help patients, but for the ones that don’t care about patient care and prefer humanly, earthly luxuries that tie in with the high-paid, high-stress jobs of being a doctor, well, that’s unfortunate. I wouldn’t necessarily advocate against removing doctor’s pay, because maybe they’re willing to do good patient care work in part because the money will help them and their families, so who’s not to say that people can’t enjoy any luxuries?
I think this is why we ended up talking for 6 hours and could have gone longer.
I had wondered why we went so long and I realized after my post-podcast nap that this was the first time we could talk about our pain in an environment where we didn’t have to defend ourselves. As I said at one point, we know we’re not full of shit on this, because I know the feeling of waking up and thinking “this shit, again?!,” as itterama does, but not every doctor and not everyone knows how that’s like. If a podcast like this can help educate people about the pains that we as disabled people experience every day – dressing ourselves, let alone doing any kind of sport – then we can build more bridges of empathy and understanding.
Maybe then I won’t have to worry about hiding my disability at grocery stores.
I know this is unprofessional, casual information.
It really shouldn’t be like this. The doctors that specialize in pain, of which I’ve seen four [but had forgotten about one due to that doctor’s ineffectiveness], maybe shouldn’t be forced to experience pain quite to the level that their patients do, but they should  have this level of information about how pain affects their patients to  share this information with patients. We shouldn’t amble around in the dark, thinking doctors don’t give a shit about our lives, without any of this information. You shouldn’t have to read me writing thousands of words of nonsense and watch a 6-hour video by two non-professionals to get a majority or all of this information, but, we don’t have our livelihoods tied to healthcare.
So it’s challenging because there are good doctors that do try their best.
The shitty ones are like the one I saw that couldn’t spare me any more than 5 minutes of his time and began talking in a way to provoke anger in me if I asked any questions about physical health besides his prescription of pain management medicine Oxycodone. He was happy to keep writing that prescription for me monthly without doing anything with his knowledge of sports medicine. That sort of man is a terrible human being, even though on review websites, people say that he’s a nice man and isn’t a pill-pusher. Maybe for them, but for me, he was not a compassionate doctor but a monster. So there is a level of subjectivity as well. Why would others consider him helpful, both online and actually the pharmacy cashier that rang up my prescription, whereas I didn’t?
Maybe this doctor only liked simple cases?
That’s fine, I understand the need for ease of work. It’s nicer to not have to deal with the nuance of a 15-month case or a 11-year case. It’s easier to see the cut on an arm and bandage it up. Dealing with the physical, emotional, mental, and psychological pain involved with situations can require multiple disciplines and might never be accurately solved, in part because “pain” to us could be a physical malfunction of the X-Y-Z, causing pain sensors to misfire, so that might be why pain feels like a dirty word when I’ve mentioned it to some doctors…
…But you have to keep cursing.
Eventually, someone is going to hear that you’re not actually cursing at all, you’re talking about how your life is being influenced by something that they have the ability to resolve. For me, if that treatment plan starts in a few days with an assessment and verification of diagnosis, then that means I have the ability to recover – and I thought I would never be able to do anything at all again. I might not be able to do extreme sports, hike, or do many abnormal activities again, but if I can do normal things, then I can help others do normal things as well. My life felt like it was already over months ago, so this is like a rebirth. I can completely ignore anything that maybe would have bothered me in my previous life. The opinions and likes/dislikes of people don’t matter to me so much anymore. It does get me mad still to see some people’s perspectives on things, now I know that much of that aggression of my part is because I don’t want to see that in myself. That doesn’t justify the bigotry of others or my inaction toward them, but, rather to mean that my battles can include side quests to inconvenience them rather than fight them directly as others do in their main quests.
My main quest is writing to help others in their life.
One of the two main characters of “The Story,” was born with chronic pain and spine issues. I don’t know what details exactly, but at points during this podcast, I thought about how she would have to deal with this problem from birth and “The Story” starts when she is a teenager and probably goes throughout her entire life, so this will be a topic I’ll address at length through her, through me, and through others. If being a disability advocate, even if I get to a point where I am no longer disabled, is one of my callings, along with podcasting and writing, then so be it. Let me get the strength and ability to speak on these issues as I’ve experienced them with the voice I have to prevent others from feeling so isolated as I constantly experienced for months.
I’m not isolated and alone anymore.
I have many more friends and acquaintances now compared to months or a year ago, so I have more tools in my emotional toolkit to deal with pain on a daily basis. On a morning like today, I felt minor nausea and experienced minor – for me, major perhaps for you – pain throughout the podcast, but it was more important for me to say what I’ve experienced in my life now compared to putting it off. What day will I be without pain? I might have moments or even pretend to have days where I don’t have pain, but that pain is just pushed in the background, and when I get frustrated or rude at other people, that’s my red flag that I need to reassess my life, readdress what I’m doing, and figure out what I can do to figure out life – so I’m not pushing my pain on others as lashing out at them. Sure, there are times where it’s necessary to express pain in order to help solve it, but for those who can’t help with relationship-based emotional pain like myself, telling me about your relationship pain is a waste of time.
I can help with resolving physical pain – along with others.
|Sources: My personal experiences.|
|Inspirations: Writing about our talk and my experiences is a good way to put the thoughts to rest. I was thinking about how long it’s been since I’ve done some broadcasts… a week? Two? Wow, I thought they were weeks ago.|
|Related: Sober Living essays and Tripping On [The American Healthcare System] chapters.|
|Picture: The scrapbook of our talk.|
|Written On: 2021 July 22-23 [10:23pm to ” only perspective to take” at 10:36pm; 12:01am to 12:33am]|
|Last Edited: 2020 July 22-23 [First draft; final draft for the Internet.]|