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Suffering (and not smiling)

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

IMG_20240117_125249__01__01__01__01.jpg


2.1 miles away

Comments

Well, pretty typical of our healthcare system to let this spiral to this level and still not offer someone suffering to your extent few options.

Howard, you have options.

You are brutally worn out.

Understandable after your journey. You’ve been through much and you aren’t getting much sleep or enough sustenance or light in that garage so it makes sense you’ve fallen ion hard times. And you are no stranger to hard times… but this time you are quite worn out for a multitude of reasons.

Somewhere along your path, you were invalidated, you didn’t think your feelings matter…. But the truth is they do matter. What you are feeling is valid. Please trust yourself. Your pain is attempting to communicate with you messages. You have a gigantic open wound that is constantly being perturbed by formulas you cannot properly digest. Your body is speaking over and over.

I’m so sorry no one is listening to you. But we are listening to you. And you are listening to you albeit being very mentally and physically worn out.

You have options. I’m not you but off the top of my head, number one, today, you can buy the ingredients and make your own ‘milkshake’ sounds better than formula haha. Seriously. Pea protein is in both of your formulas and it’s hard on me and makes me bloat immensely and I don’t have a feeding tube. So literally, someone, anyone, can put those things in a blender and you can put this in your bag tonight. I can even give you a recipe that is the right consistency to avoid plugging your bag. Is it more work than popping open a formula? Yes. Is your life worth it? Yes. Option 2, you demand they move this entire feeding tube location. You have had such immense struggles for so long with this site on your body, I’m not sure why this isn’t contemplated by drs more if you can currently only intake 200 calories a day. You can acquire the best pain meds over and over but ultimately the source needs to be shut down. Option 3, you are incredibly worn out. Not thinking like you are normally able to because of lack of nutrition and so forth and you contemplate TPN. Maybe if only for 3-6 months. It’s not ok to only get 200 calories a day as I know you know. Although you’ve done it before, it’s very hard on your body and needs to be addressed and not ignored by the medical establishment.

In addition to these options, someone needs to move you indoors. You need filtered air. Air flow. You need light. You need temperature stabilization (takes more energy than you realize ).

I understand you are too worn out and despondent to think of these things right now. As a favor to your friends here on Phoenix rising, will you give this list to your wife? Or your caretaker? And admit that you are really really struggling and losing your sense of how to proceed. That way, those that really care about you can help you make some decisions here. Also, you’ve done so many pain meds at this point and things you dydnt used to tolerate that who knows, maybe you would tolerate sedation ok getting your feeding tube moved this time?

Howard, I’m holding space for you. Your feelings of despondency are so valid in your circumstances. I’m sorry so many drs have failed you. I’m sorry you started seeing a light only for it to get snatched again. But, you have to listen to yourself. You have to listen to the pains language. It doesn’t want to be numbed out anymore. You deserve to be heard. You are worthy of being heard. You don’t need to exist at the level of wasting away again. That must be entirely triggering.

Will you please contemplate these options? You legit can do option one tonight. You can order grocery delivery on ingredients and ask your wife to put in blender. I have super simple feed recipes for extremely compromised digestion states. It’s never been tried yet Howard.

Holding space for you during your darkness. Literally and figuratively. Rest. Grieve. Mourn. And then remember, There is a way.
 
Hi @Howard (Fed-up, Howard), and no, I don't blame you one little bit.

I think @sunshine44 has some very good points, but it's finding the energy to implement them, isn't it?

You're worn out. I think the elation of getting out of the nursing home has given way to your new reality. I hate that for you....and I know that you hate feeling that way also.

Yes, couldn't the site of the tube at least be moved? What about your old formula? Can't that be used again? I'm sorry to say that I forget the reason it was changed.

No, a garage is no place for you to be at this particular time....or, let's face it, ever? You must be cold and then hot will immediately follow and most digestive systems would shut down in them. Like I said, you're worn out and it's so much easier to just lay down and sleep, isn't it?

But is that Howard? I don't think so, for at least as long as we've been "friends" anyway. You're a live wire, a shall we say, a person who wants to look in all of the nooks and crannies. But lying there, wasting away....that's not really the Howard we know. You aren't Lazarus, and will need plenty of help. Is you ex in a position to even call an ambulance (from a pay phone so she can't be traced) and have you taken to an ER?

It seems to me that yes, they'll have to do something with you and for you...and you may even start the round of hospital and nursing home again. But you know, during that period you were able to get out and have freedom and enjoy life and others for a time.....what going on a year or so.

One other thought: What about your old nursing home. Could you go back there? Has anyone said for certain that you don't have an infection going on? Enough, Howard. You're tired. Let someone else take over, go to the ER somehow and who knows the type of specialist you may find. Luck is good every once in awhile. Yes, it is.

What about your SSI? Has that come through at long last....if not, what's the hold up this time?

I agree with you. Pain is a grinding insult to both the body and the soul. It's never ending. Have you been tried on gabapentin or lyrica. Both helped me immensely and I wanted to get off them. Stupid thinking!

OK...you're probably too tired to read all of this anyway. Is there anything you need or want? Be free....be the old Howard, state your needs. It makes it so much easier for everyone.

Getting my pain under control was probably one of the best things that ever happened to me. To date, those are the only two drugs I know that really work. Do you have an internist? I'm sure you don't.....but you'll need someone who can guarantee a steady prescription supply.

Be good to yourself, Howard, and please, please don't go giving up. Rest for a day if you must....and then get on with the job at hand. If @sunshine44's drink will help, then ask you ex to help out & use her blender. It's so easy to give up....I remember. Yours, Lenora
 
I remember one time a friend telling me to just try and ignore the pain. I looked at him and said if someone was repeatedly stabbing you with something sharp.......do you really think you could just ignore it?

Howard, the one thing you are NOT being is a baby and you are not embellishing a thing. I'm once again floored at the level of negligence by the medical establishment.

I'm wondering if your ex or anyone else really knows the level of your suffering or do you think you tend to play it down? You've been stoic for so long. I hope you can reach out and ask for help in ways maybe you've not been able to before with anyone be it friends, family, practitioners..........ex.

Love you Howard. Holding your hand and giving big hug.
 
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Thanks y'all. I talked to a @sunshine44 and we're going to work out a "made from scratch"
feeding formula on our own. I plan to introduce one ingredient at a time, so at least I get some calories in me.

I've also done a lot of reading today based upon this idea of making my own food, and I think it's doable. Based upon that, I am somewhat encouraged.

Also I hopeful sign, and not to get graphic, but I've had diarrhea off and on for the past 24 hours, because I ingested approximately 300 calories worth of Liquid Hope. Of course, I am ridiculously exhausted, however my day has been pain-free, for the most part.

It seems my intestines are free-flowing, and mostly non bloated, which seems to be the origin of the pain problem. Of course, I can't maintain this lifestyle. But it seems there's a solution embedded in there somewhere.

Thanks to each of you, and I appreciate the love and support. Although I don't know often admit it, I do need support at times.

Of course, there's some kind of mechanical reason why everything gets stuck in the same exact place each and every time, and that it's been happening for the most part, since 2019. But I don't think any living person can solve that equation. So if I can solve the intestinal bloating issue, I think I'll be okay.

Plus, at least, and finally, I have some money in my bank account, so I can purchase the goods and necessities I require. And possibly, I may be rewarded food stamps sometime soon... If they feel my claim is legitimate.

In any case, I'll be okay. I'm just sort of down about everything. Fighting fighting fighting all the time is exhausting. And each of you knows this. Each of you does something similar in a daily basis, otherwise you wouldn't be here on this website.

Also, I've had a couple of good days recently, but that only happens when I don't eat anything at all. That of course, isn't sustainable. :)

Oh, and yes, my former wife is being supportive. She will pay for things if I ask her, and I believe she'll help out with blenderizing the food, when the time comes.

Take care,
Howard
 
They were talking about C-Dif in another thread and it made me wonder if you could have picked it up somewhere especially since it seems like you've had diarrhea a lot since you got out of the nursing facility???

Anyway just a thought.
 
They were talking about C-Dif in another thread and it made me wonder if you could have picked it up somewhere especially since it seems like you've had diarrhea a lot since you got out of the nursing facility???

Anyway just a thought.
Nope, not that. If I do not eat or feed, I feel healthy and happy and pain free. :)
 
@Howard...."Good, better, best; never let it rest, 'til your good is better and your better best." Well, I'd say that you're at better and that's just so good to hear, but if things get worse, please promise us that you'll head to the ER.

Your ex sounds like a good soul and I'm glad you have her. Still, I don't want you living in that garage forever. Great news about money in the bank and if you don't get food stamps, I think we'll have to go on a march in Washington.

I'm glad that you talked to @sunshine44, as I know she'll help in any manner possible. All of us will, in any way that we can, but you have to let us know.

Isn't that just the one big failing that most of us have? Asking for help often seems to be the ultimate sin, for lack of a better word. I know that I fall into that category....even if it's just asking someone in the room to hand me a bathrobe. Crazy, when you think about it. So Howard, don't be me...I'm not the best of examples and you can do a lot better, I know.

I'm sure the lack of light isn't helping either. But one step at a time, and right now we want to get you feeling better, and then we'll tackle your living arrangements. Yes, we'll find a penthouse for you somewhere!! (No, I don't promise that.) Keep us posted and I hope you'll feel more like Howard.

I'm joining Tammy in her hug and kiss. Now go and start blending. And if the diarrhea continues, a hospital visit will be needed (but you know that.) Yours, Lenora
 
Hi Howard - I wish I had an answer for you. I'm so glad that sunshine44 might and very glad to hear that you might work with her. I've never had to deal with un-ordinary pain. I can't imagine it on a regular basis.

I'm glad you're still writing - and I still wish I had answers for you (and everyone else here!) I do think there are answers, somewhere -- take care, and keep writing when you are able --
 
If I do not eat or feed, I feel healthy and happy and pain free. :)

Oh, how frustrating.

I do wish you had access to good medical care Howard. I know the system works differently to here (UK) so this may be unaffordable to you.

I know someone mentioned a while back about the possibility of locating the feeding tube differently. I wonder if this is something you could ask your doctor about.

Can you tolerate baby food at all? Not many calories on its own but something I have done in the past...gastrointestinal issues here also, although not the same as yours.

I totally understand severe pain and your description and experience of living with it very well as I am sure many here do.

Hoping you manage to get out again soon to top up your vitamin D levels, get some fresh air and take cool photos for us! :)


Sending hugs also.
 
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.

Is the pain getting any better? Does pressing that spot still work for you when the pain comes back? I hope.
 
Hope you're staying warm. The last week or so it has been miserably cold, especially with the wind chill (for me anyway ). My body protests the cold.

Sending love and hugs your way
 
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Hope you're staying warm. The last week or so it has been miserably cold, especially with the wind chill (for me anyway ). My body protests the cold.

Sending love and hugs your way

Hiya -

The cold hasn't been that much of an obstacle, but we've had lots of (needed) rain.

I hope things are going decently on your end. I am contemplating next moves... Whatever that means. :)

H
 
I think your commentary on Pain is a valuable, revealing glimpse into this whole arena few wish to talk about.

Thank you for overcoming your reluctance, in order to share that.

It's the message that takes over most other messages. All that noise, like you say.

And so we will seek to escape it, because this is our human Nature. Some of us might decide to use drugs. We are therefore, terribly weak individuals who don't Man Up. (NOT) (We are the most brave)

I found that during my hellacious pain episodes, tied to acute nausea events, I took extremely hot baths every three to four hours, the ONLY location and state wherein I could stop vomitting every six minutes and escape the nausea, the air hunger, and the horrific pain everywhere.

I nearly pickled myself, or turned myself into that hapless soul who made the mistake of landing in Japan, (see the novel, Shogun). I wonder how much mercury did I mobilize, boiling myself?

Meanwhile, I"m relieved folks with very good suggestions, have made a few.

Hang In There, @Howard.

R
 

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