This may be a depressing unsatisfactory read. Proceed with caution.
Brief update:
I received trigger point lidocaine injections this afternoon in my stoma area, and the pain went away... for 60 minutes. Yes, it was a glorious 60 minutes!
I have a follow-up appointment on February 8th.
In the meantime, I am still only able to ingest about 200 calories per day (gummy bears, wee bit of formula), otherwise, the painful bloating / nerve pain is too much to handle. And that's okay, because I am capable of surviving without food for long periods of time. I did just that back in 2019 for months on end. At least I am able to hydrate this time.
No pain meds dispensed, so I am still relying on the marijuana, but am also trying to schedule for some acupuncture. Or I may go through with the nerve block procedure with the disinterested doctor I engaged last week (which is scheduled for February 1st).
I’m not suicidal or anything, but I am borderline despondent at times. Wasting away is a frustrating experience, but still, it’s better than dealing with unbearable pain.
I wrote the following last week, in an attempt to describe my pain experience. My words may or may not come across, but I figure that I may as well share. Perhaps some of you, or even one of you, can relate.
Pain is Noisy
Upon waking this morning it took me a good 20 minutes to realize that something was different. I was experiencing quietude. Peace. A serene exhilaration. Something was different. A massive shift in my perception. And then it dawned on me, no pain. No pain whatsoever.
And what you may or may not know by now, is that constant pain is noisy as hell. It permeates your entire being. It's unrelenting. Pain demands attention. Everything one does while experiencing pain is accomplished under duress. Stress. Yes, that, too. The stress of life is multiplied infinitely.
Every thought, every task, every subtle nuance, is clouded over. A need to escape the discomfort is always the primary focus. Yes, there are exceptions. Brief interludes of awareness, dedicated to other sensations, conversations, amalgamations, but the duration is short and unrewarding. Because within seconds, or a series of moments, the pain forces its way back, desperate for attention - making me aware of its dubious presence.
I sat up in bed, unconcerned in regards to my physical movements. Not wondering where my marijuana gummy bears were located. Not the least bit intent on smoking a cigarette. Not putting together another failed strategy to resolve the mechanical issue within my internal midst. I just sort of existed for a time. I just let my thoughts wander. And wander they did - a long lost freedom found once again. A sense of contentment enveloped my state.
So yes, I had it going, for a while. A long while. Within an hour, I got in my power wheelchair and headed out. Where would I go? What would I do today? Ceaseless possibilities in endless combinations. Everything was on the table.
It turns out I rode out the two miles to Lookout Mountain. And the best part? The cracks in the sidewalks, the pieces of gravel, the uneven curbs, the usual things that enhance my pain, had no effect whatsoever. I was rolling along without a care in the world. Never once wincing in agony. Not doubling over in pain. Not ingesting marijuana, cigarette smoke, or dosing myself with an endless flow of simethicone drops. Nope, none of that was on the agenda.
Last night I did something. I found a temporary solution. And the solution could be extremely temporary. Because really, anytime I start improving in one area, something else goes miserably wrong.
Which I did was find a sort of release valve on the left side of my abdominal area, adjacent to my stoma. Pushing down this tiny tiny area (he junction where the duodenum meets the jejunum, known as the duodenojejunal flexure), allowed gas, fluid, or a combination of both, to flow free. Peristalsis initiated. Gurgling sounds in my abdominal area. A host of related activity taking place in an area that's typically bogged down.
So there's that. And last evening I was having bouts of success. Gastric noises. Intestinal flow. That sort of thing.
Nothing Lasts
Well sure, the great sensation, the lack of agony, left me as soon as it came. Sometime around midday, the pressure began building again. And within a couple of hours, that was back into the realm of pain. Not the terrible kind, but bad enough. Bad enough to require a dose of marijuana. And that's where I'm at right now. Body angled a certain way. Pain to the touch. Allodynia sensations. Nerve shock. Nerve duress.
But it's not at all awful after having had a break. Being able to exhale is a gift to be appreciated. Perhaps I'll be able to relax again, and enjoy life quietly sometime soon.
For me, the “noise" is tremendous, and wholly dissatisfying. And then also, the pain is making decisions for me. It controls me. It dictates my actions. It holds me back. It prevents me from doing. I am not allowed to be me. I am instead focused upon, and dedicated to, anything that will bring relief.
I hope none of you have to deal with anything similar. And perhaps it's not as bad as I'm making it seem. I may be embellishing matters. Or may be overly sensitive to pain. You know what I mean, right? I may indeed be a big baby. Because maybe everybody feels pain like this all the time, and they are somehow able to cope, somehow able to ignore it. And maybe I'm just weak. Maybe I'm a weak person.
You see, and that's the one good thing about death (not that I'm aiming to die anytime soon). Death is quiet. Once you're dead, all the noise ceases. And someday, when I do perish, that's the thing I look forward to most. The quiet. The nothingness. The empty void enveloping me. Total relaxation.
So if you still know me whenever that happens, know that I am resting comfortably in the eternal abyss, sans suffering.
Dateline:
I wrote that last week. I didn't want to post it. I never want to post things these days. What's the point? Perhaps excising my demons. Do I even have demons? Perhaps I should make friends with these demons. Come to an agreement. I don't know. I just don't know.
But since I've stopped eating, and since I've stopped ingesting feeding formula (for the most part), I am better able to tolerate the days, and especially the evenings. And I am especially able to sleep at night. I'm able to sleep for several hours at a time. It's quieter now. I can exhale. Mostly. Somewhat comfortably. Reasonably well.
At least on intermittent occasions, I can successfully climb out of bed and roll around in my wheelchair and see things. Experience the neighborhood. That sort of thing.
So it's not all bad. It never is. There's always something. In every day there exist moments that are worth living. I just wish there were more of those moments. Perhaps that makes me greedy. And if it does, I am okay with that. I've got to be.
Take care,
Howard
everything is black and white
2.1 miles away
Brief update:
I received trigger point lidocaine injections this afternoon in my stoma area, and the pain went away... for 60 minutes. Yes, it was a glorious 60 minutes!
I have a follow-up appointment on February 8th.
In the meantime, I am still only able to ingest about 200 calories per day (gummy bears, wee bit of formula), otherwise, the painful bloating / nerve pain is too much to handle. And that's okay, because I am capable of surviving without food for long periods of time. I did just that back in 2019 for months on end. At least I am able to hydrate this time.
No pain meds dispensed, so I am still relying on the marijuana, but am also trying to schedule for some acupuncture. Or I may go through with the nerve block procedure with the disinterested doctor I engaged last week (which is scheduled for February 1st).
I’m not suicidal or anything, but I am borderline despondent at times. Wasting away is a frustrating experience, but still, it’s better than dealing with unbearable pain.
I wrote the following last week, in an attempt to describe my pain experience. My words may or may not come across, but I figure that I may as well share. Perhaps some of you, or even one of you, can relate.
Pain is Noisy
Upon waking this morning it took me a good 20 minutes to realize that something was different. I was experiencing quietude. Peace. A serene exhilaration. Something was different. A massive shift in my perception. And then it dawned on me, no pain. No pain whatsoever.
And what you may or may not know by now, is that constant pain is noisy as hell. It permeates your entire being. It's unrelenting. Pain demands attention. Everything one does while experiencing pain is accomplished under duress. Stress. Yes, that, too. The stress of life is multiplied infinitely.
Every thought, every task, every subtle nuance, is clouded over. A need to escape the discomfort is always the primary focus. Yes, there are exceptions. Brief interludes of awareness, dedicated to other sensations, conversations, amalgamations, but the duration is short and unrewarding. Because within seconds, or a series of moments, the pain forces its way back, desperate for attention - making me aware of its dubious presence.
I sat up in bed, unconcerned in regards to my physical movements. Not wondering where my marijuana gummy bears were located. Not the least bit intent on smoking a cigarette. Not putting together another failed strategy to resolve the mechanical issue within my internal midst. I just sort of existed for a time. I just let my thoughts wander. And wander they did - a long lost freedom found once again. A sense of contentment enveloped my state.
So yes, I had it going, for a while. A long while. Within an hour, I got in my power wheelchair and headed out. Where would I go? What would I do today? Ceaseless possibilities in endless combinations. Everything was on the table.
It turns out I rode out the two miles to Lookout Mountain. And the best part? The cracks in the sidewalks, the pieces of gravel, the uneven curbs, the usual things that enhance my pain, had no effect whatsoever. I was rolling along without a care in the world. Never once wincing in agony. Not doubling over in pain. Not ingesting marijuana, cigarette smoke, or dosing myself with an endless flow of simethicone drops. Nope, none of that was on the agenda.
Last night I did something. I found a temporary solution. And the solution could be extremely temporary. Because really, anytime I start improving in one area, something else goes miserably wrong.
Which I did was find a sort of release valve on the left side of my abdominal area, adjacent to my stoma. Pushing down this tiny tiny area (he junction where the duodenum meets the jejunum, known as the duodenojejunal flexure), allowed gas, fluid, or a combination of both, to flow free. Peristalsis initiated. Gurgling sounds in my abdominal area. A host of related activity taking place in an area that's typically bogged down.
So there's that. And last evening I was having bouts of success. Gastric noises. Intestinal flow. That sort of thing.
Nothing Lasts
Well sure, the great sensation, the lack of agony, left me as soon as it came. Sometime around midday, the pressure began building again. And within a couple of hours, that was back into the realm of pain. Not the terrible kind, but bad enough. Bad enough to require a dose of marijuana. And that's where I'm at right now. Body angled a certain way. Pain to the touch. Allodynia sensations. Nerve shock. Nerve duress.
But it's not at all awful after having had a break. Being able to exhale is a gift to be appreciated. Perhaps I'll be able to relax again, and enjoy life quietly sometime soon.
For me, the “noise" is tremendous, and wholly dissatisfying. And then also, the pain is making decisions for me. It controls me. It dictates my actions. It holds me back. It prevents me from doing. I am not allowed to be me. I am instead focused upon, and dedicated to, anything that will bring relief.
I hope none of you have to deal with anything similar. And perhaps it's not as bad as I'm making it seem. I may be embellishing matters. Or may be overly sensitive to pain. You know what I mean, right? I may indeed be a big baby. Because maybe everybody feels pain like this all the time, and they are somehow able to cope, somehow able to ignore it. And maybe I'm just weak. Maybe I'm a weak person.
You see, and that's the one good thing about death (not that I'm aiming to die anytime soon). Death is quiet. Once you're dead, all the noise ceases. And someday, when I do perish, that's the thing I look forward to most. The quiet. The nothingness. The empty void enveloping me. Total relaxation.
So if you still know me whenever that happens, know that I am resting comfortably in the eternal abyss, sans suffering.
Dateline:
I wrote that last week. I didn't want to post it. I never want to post things these days. What's the point? Perhaps excising my demons. Do I even have demons? Perhaps I should make friends with these demons. Come to an agreement. I don't know. I just don't know.
But since I've stopped eating, and since I've stopped ingesting feeding formula (for the most part), I am better able to tolerate the days, and especially the evenings. And I am especially able to sleep at night. I'm able to sleep for several hours at a time. It's quieter now. I can exhale. Mostly. Somewhat comfortably. Reasonably well.
At least on intermittent occasions, I can successfully climb out of bed and roll around in my wheelchair and see things. Experience the neighborhood. That sort of thing.
So it's not all bad. It never is. There's always something. In every day there exist moments that are worth living. I just wish there were more of those moments. Perhaps that makes me greedy. And if it does, I am okay with that. I've got to be.
Take care,
Howard
everything is black and white
2.1 miles away
