Nobody Warned Me About Pain Medication Withdrawal

If you've ever been sent home after surgery with pain medication and little guidance, this conversation is for you.

In this episode, Nicole and Trina share their personal experiences with post-surgical pain medication, physical dependence, withdrawal, chronic pain, and the emotional toll of trying to get help when medical professionals don't seem to understand what you're experiencing.

We discuss the difference between addiction and physical dependence, the shame many patients feel when withdrawal symptoms are misunderstood, and some of the non-medication strategies we've used to manage pain throughout our health journeys.

This episode is not medical advice. It's a candid conversation between two people living with chronic illness, disability, surgeries, and ongoing pain who want others to know they're not alone.

📌 Connect With Us
Trina Ricketts – The Intimate Ostomate
Website: intimateostomate.com
Instagram:   / intimateostomate 
Youtube:    / @intimateostomate 
Books, guides, coaching & resources
Coaching • Books / Guides • Resources • Intimacy Advocacy

Nicole Richards - Ostomy Innovations
Website: ostomyinnovations222.com
Instagram:   / ostomyinnovations 
Youtube:    / @ostomyinnovations222 
Coaching • Wellness • Disability advocacy • Ostomy Clothing

Transcript

SPEAKER_01 0:06

Welcome everybody to Rewired and Desired, where intimacy and mindset and disability intersect. My name is Nicole, and I'm your co-host. And I have my lovely co-host here, Trina Ricketts. And today we are going to discuss pain medication. So pain medication usage, along with some of the things that Trina and I have found in our ostomy and our pain journeys that have been working for us to manage pain with or without pain meds. So getting into it, Trina, why don't you start us out?

SPEAKER_00 0:40

Sure. So this is a subject that can get me pretty riled. And before I start, I just want to tell the audience that I have a cold right now. So that's why my voice might sound different. And if I have to cough or blow my nose, I'll just go over here and try not to be too noisy. But my pain medication story was very like traumatizing for me because my first ostomy surgery was an emergency surgery. I had a perforated bowel and I was in and out of the hospital for like two weeks before they discovered what was going on. By then it was too late to save my bowel. And like a lot of people probably watching this podcast, I had to get an ostomy. And I was in the hospital for about a month and I was on pain meds. And I had no idea that like this is how naive I was. Even growing up in a family with addiction and everything else, um, because it was like street drugs that my family was addicted to, none of them were addicted to pharmaceutical drugs. I really didn't know anything about like the addictive nature of pharmaceutical drugs. And I didn't know that they were giving me something that I would develop a dependence on, a physical dependence on. So they send me home from the hospital at the end of the month, and I'm really frail. I'm weak. I can barely walk. I have to I had to learn how to walk again, like train my muscles again. Like I could I have to pull myself with the railing up the stairs. That's how frail I am. And um people like start crying when they see me because I was skin and bone and stuff. It was just so messed up. Um, and they have no directions about the pain meds except for um we've got some, we've got some pain meds here for you, and um, you know, this is the prescription. And the prescription ran out in just like I think a few days. And at that time it was really close to Christmas, and my family doctor was away. So, and with you know, with pain drugs, you can't get them unless you go to your regular doctor. It depends on where you live, I guess. But here they're very strict about who you get pain drugs from, and only certain doctors could prescribe them. So I thought, like I thought immediately when I started going through withdrawal that I was just having pain because my pain meds were gone and withdrawal from it was diluted that I was on. One of the main symptoms of withdrawal from diluted, or also known as hydromorphine, is that your intestines will start to like spasm and clench. And I had just had intestinal surgery, and that was it was a similar feeling to what I was feeling when my bowel was perforated. So I literally thought, oh my God, is my bowel perforated again? And I was like stressing out. So at first I thought it was because I couldn't get pain meds, right? Yeah. Then the pain was getting worse and worse and worse, and Advil and Tylenol weren't helping, and nothing I could do was making the pain go away. Then the intestinal spasms got worse and worse to the point where I was scared I had a bowel perforation. So I went to the hospital. This is like three days before Christmas. I go to the hospital and I say, I'm in so much pain. I think that maybe my bowel's perforated again. Like this feels the same as it did before my surgery. They they do a test, they're like, your bowel's fine, you know, it's not your bowel. And and they look at me completely scrawny and think that I'm drug seeking.

SPEAKER_01 4:06

Right.

SPEAKER_00 4:08

I'm like, well, I'm in so much pain. Can I get more like drugs for this pain? And they're like, sure, we'll give you this uh stuff. And it wasn't hydromorph, it wasn't diluted, right? So they give me this other pain med. I'm so grateful. I go home, like I'm trying to prepare for Christmas, and I can't even get out of bed.

SPEAKER_01 4:25

Yeah.

SPEAKER_00 4:25

And uh I take this other stuff, but the pain doesn't go away. It it's still getting worse. I feel like I'm dying. Like gosh, I feel like I'm fucking dying, you know? Yeah. And so that day I go to the hospital again, and they treat me even more dismissively and like I'm drug seeking. This time they give me a shot of some kind of pain reliever in my ass. And it's not diluted, it's not hydromorph. And still, I have no idea at this point that I'm going through a draw. I just think I'm in pain. I have a like, I don't know what's going on. Yeah, but yeah, how would you know? You know, this time I say to them, listen, the only drug that seems to work for my pain is diluted. Can you please give me the same pain med I was on before? Because that's the only one that's working. And they uh obviously just took that as I was drug seeking, didn't even tell me that they thought I was drug seeking, just treated me like I was a piece of shit. You know what I mean? So I go home again hoping that this thing that this injection in my ass is gonna take some pain away. It doesn't take the pain away because it's not pain, it's withdrawal, right? Next day, Christmas Eve, I go to the hospital again because I just so badly want to be able to spend Christmas morning with my children. And I still think I'm just in pain from the surgery. So I I go in and they are treating me like shit again, like refusing to help me. And this time I say, Can I see a social worker? Can I have can I talk to an advocate? Yeah. And they finally they get a social worker down to emergency finally, and she comes into a room privately with me. And I explained to her, like at the time I was a man, a marketing manager for a nonprofit. And I had three children, and I had like a normal life. Like I was not a drug addict, basically. I was trying to explain to her, like, I don't think drug drug addicts should be treated this way, but I'm not a drug addict. Yeah, I just need help. So they finally give me dilated because of her advocating for me. And I go home, it's Christmas Eve, it's like midnight, and it's just too late for the dilated to catch up. So all Christmas morning, while my kids are opening presents and stuff, I'm just puking and lying in bed. Oh my gosh. And I couldn't spend it with them, and it was just so heartbreaking. I feel like crying, just remembering how sad I was, you know, and how mad I was that they took that away from me at the hospital.

SPEAKER_01 6:53

Yeah.

SPEAKER_00 6:54

And now I'm starting to feel better after all of this. I'm starting to feel better. I'm lying in bed. I get on my phone. Or was it my phone, or did I get up and look at my computer? I can't even remember. But but I decided to look up um the pain I was going through. I looked up Dilotid, I started to research the meds, and that's when the first thing that started coming up in the search was withdrawal, withdrawal. And I was like, oh my god. I've been going through withdrawal this whole time and didn't know it. And they were treating me that way because they knew it. But why wouldn't they refusing to give it to me?

SPEAKER_01 7:29

I did, but I don't understand either why they couldn't tell you that, you know? Because why would they not be able to do that? Because they were judging me.

SPEAKER_00 7:36

They were judging me and thinking they thought probably thought I knew and I was putting on an act.

SPEAKER_01 7:41

Yeah.

SPEAKER_00 7:42

You know what I mean? But I wasn't.

unknown 7:44

Yeah.

SPEAKER_00 7:44

And uh so anyway, so then my doctor finally gets back into town and uh I tell her my horror story, and she gets me, prescribes me a bunch of dilotid, and I I they told me to wean off of it, skip every other dose. That's not how you wean off of it. Don't ever listen to anyone who says that. I had to like just like lessen every other dose. Yeah. And it and it was over like a couple of weeks to get off of it for me anyway. I've heard of people doing it cold turkey, and I can't even imagine because it made me honestly so sick and so unable to cope with life that there is just no way that I could have done it. Um cold turkey like that.

SPEAKER_01 8:22

I don't think that's crazy. But you know, it's not crazy because I have a similar story. Not, it's not, I don't think to the length of yours, um, the extent of yours, but if I if you and I have both had this happen, can you imagine how many other people have this happened if you and I are saying like this has happened to us? So my story was I had a resection done on my intestines due to my Crohn's, and I was in the hospital. I get out and I was still had a fever. I mean, they let me out of the hospital. It's a was a five-day stay. They let me out of the hospital with this fever. I go home and um I've told this story before, and I ended up with C diff and leaking out my intestines, all sorts of things. And I ended up almost literally passing away in my home, right? If if my ex wouldn't have been there at that time. So he brings me to the hospital. I end up in the hospital for another three weeks. So by then I'm, you know, the they had to figure out that it was even C dip. They had to do all the tests, it took a long time. When I was finally well enough, um, I got to go home. So I'm home for another several weeks just getting better. I mean, it was at least another month before I even got to go back to work. But uh in those weeks, you know, they sent me home with pain meds. And I know in the hospital I was on dilated, um, I had like that pump at some point. But when they sent me home, I think they sent me home with oxies and I still had uh Vicanin, I want to say. And so I was taking oxies consistently for the pain. And when I was finally starting to feel normal, I went, I remember one day I finally went out with a friend to lunch when I was finally back, right? Or getting there. And I go out to lunch and I come home and I was like, why am I feeling hungry still? Like, what's going on? Like, what's my body just feels weird and I couldn't figure it out. So I took a Viking and the pain went away. Like everything that was like going on inside of me went away. So I I just figured um I was going through withdrawal. I didn't know either. I had never either been on I had been on pain meds in the past, but never for this length of time. I mean, now it was like two months probably that I was on consistent pain meds.

SPEAKER_00 10:38

Totally.

SPEAKER_01 10:39

Um, and probably high doses, like even oxy is pretty, you know, strong. Um, and then um I didn't I didn't, like I said, I just didn't know and I just figured it out that that's what was going on. And and I think it was just instinctively and intuitively that I just started weaning myself off with the Vicanin to be able to feel good and go throughout life. But yeah, no one told me. And I here's my thing is I felt shame for it because I thought, oh my gosh, like my dad was my dad was a drug addict, right? But like you, it wasn't prescription meds, it was um crack, cocaine, like that kind of thing. And so, so for me, it was shame around addiction, addiction, like yeah, never did I have even a addictive personality, you know.

SPEAKER_00 11:26

It's so different though. Addiction to me is mental. I need this, I need this. Yeah. Physical dependence is more like that's just the withdrawal, you know.

SPEAKER_01 11:36

That's the withdrawal, right? Right.

SPEAKER_00 11:37

But I didn't know you were probably like me, you probably still were like very committed to get off the drug, right?

SPEAKER_01 11:42

Yeah, oh, for sure. I mean, I and I was working in a police department and I didn't want that stigma, you know, that I was a drug addict. So I didn't tell anybody. And this is the first time even really talking about it, honestly, besides I've told you about it. Yeah, just because and there's been a f there's been a couple other times since then that I had to be on pain meds long term and I but I recognize it. I'm like, oh, I'm having a withdrawal. So I always now, always, if I have been on any length of time on a medication like that, I will make sure that I spread it out so that I have enough so that if this happens, I can wean off again. That's crazy.

SPEAKER_00 12:23

But you actually started hoarding dilotids. I started hoarding them so that if I ever go through a surgery again, I don't have to depend on them to make sure I get I can wean off at the right rate. I've even brought them to the hospital in my purse because I don't trust the doctors. Because you know what they've done to me, and this has happened more than once, where they start to taper off my pain med without telling me, you know, putting it in through a butterfly, and I'm in the hospital. And because after that, I was in the hospital a lot. I had multiple bowel blockages, abscesses, like just one thing after another. And then another ostomy surgery, and the same thing happened then. They they think they told me that people don't get addicted or go through physical dependence on an uh painkiller until they've been on it for three weeks. And I call bullshit. Yeah, because if you're if your body has gone through it before and gone through withdrawal, then it's almost immediate for me. Like I could probably do two or three days, but a week, right? Like for me, honestly, after three days, I start going through withdrawal when they take it off. And that's what they did. It was like the fourth day, the third or fourth day. And I was planning to just wean myself off when I got out of the hospital. Yeah. I know what to do. Yeah, like I always do because they don't know what they're doing. They literally do not know what they're doing. When it they they brought a pain person directly to me to explain to me that no, you don't get go through withdrawal unless you've been on it for three weeks. But I'm like, I'm going through withdrawal because you tapered off without telling them. And it's just the worst feeling in the world when they don't listen to you. And the last time they actually sent a social worker to see if I was like okay mentally, like an okay, like if I could be trusted with my children or if I was a drug addict. Just because I was upset that they were tapering me off without telling me.

SPEAKER_01 14:13

Yeah.

SPEAKER_00 14:14

And two, you know?

SPEAKER_01 14:16

Yeah, oh yeah, 100%. I've since my mental health issues and since I've put myself in, um, check myself in a few times to the for suicidal ideations. I have had, I cannot go to a hospital without being flagged somehow.

SPEAKER_00 14:32

Oh, I'm sorry.

SPEAKER_01 14:33

Oh yeah. It's it's in my records, it's never gonna, you know, it's never gonna go away. So now right away, I mean I guess my accident, they I mean, right away they gave me whatever they gave me in the in the ambulance. And when I got there, they kept giving me pain meds, but you still can't help to know, like you already know, right? So like if I'm not wasn't just in a serious accident and I go in and say, I think I have a blockage, which I have, they don't still haven't taken me seriously, you know?

SPEAKER_00 15:00

I spent the night, I've spent the night. I've lied in emergency for like hours being ignored with a blockage and knowing that it could burst my bowel at any moment.

SPEAKER_01 15:10

Yes, me too, throwing up, throwing up, and then just been like, no big deal. It's like, are you serious? Like, I'm dying here, you know?

SPEAKER_00 15:18

This is this is a medical emergency, like please help. But you're too sick and too weak to to advocate for yourself. And at the time I wasn't with a man who would advocate for me. Yeah, so I you know, I always had to like either advocate for myself or just sit there quietly and suffer until someone finally came and got me.

SPEAKER_01 15:36

Same, same. It's it's rough out there, I'm telling you. So, so let's let's think of some. I mean, I don't have to think of it, but I think we should talk about some of the mental assets aspects behind it and ways that we manage it. And like you said, you keep some on hand just in case you need it. You know you don't have an addiction, you know that it's your body, you know what you need to do. I'm the same. Now I know what I need to do. I'm well prepared. I would never want to feel that way again. Um, what are some of the other ways that you found for managing your pain besides pain meds?

SPEAKER_00 16:10

I mean, pain, like we were we were talking before we started the podcast about how pain is pain completely envelops your entire being. You know, last week my back hurt so bad that I could barely walk or move for a whole week. And like I couldn't even think straight for the whole week. Mentally, it it takes such a toll on us, you know. Uh this week I have a cold, I'm sick, but I can still think straight, you know, but pain just it just devastates us, right? So mentally it's really important for us obviously just try to stay strong uh to get through it. And um, one of the things that I do is I try to just distract myself from the pain.

SPEAKER_01 16:48

Yeah, yeah.

SPEAKER_00 16:49

I'll watch movies or I'll you know, YouTube videos or um listen to things. I lie down a lot and I rest a lot and I try to uh imagine I'm somewhere else and imagine I'm not you know feeling that pain. Or sometimes I'll even I've done this like when I'm getting a tattoo where I imagine that I love the pain.

SPEAKER_01 17:12

Because some people do.

SPEAKER_00 17:14

Yeah, it does help. It's amazing how much it helps, actually. How about you, Nicole?

SPEAKER_01 17:19

What what so I've noticed too, and I know there was a study done on this, and and anybody that's in pain does not want to hear this, right? Like you just don't want to hear this while you're going through pain because I just wanted to like kick somebody in the shin, right? But honestly, you said watching movies, and they say if you watch things that light you up, um, it's there's the neurotransmitters in your brain, you know, don't react to the pain. And I don't know the exact science behind it, but um, probably the dopamine and all the different things react and causing, you know, a response in your body for the pain to feel like it's subsided. Um, I can honestly tell you, so I have dealt with a lot of pain in my life, right? And um since the accident, I have now more chronic pain. So I have vertebrates that are messed up, I have arthritis, now I have osteoporosis. Um, but neck, back, hips, like all of it. Um and now I'm going back to physical therapy and getting all these other tests done now that I'm back home. But um one thing I've noticed is since I have been I'd say like I want to put it up here, right? Like I've been feeling very elevated and high on life. Um, just things are just like really going so well for me. Like I feel like I've crossed this threshold of I don't know what it was, like uh mindsets that were just kind of still plaguing me a little bit. But since I crossed this threshold, I think I was trying to get past, like I just I really haven't had any down feeling days. And the pain in my knee, which still needs addressing, we're pretty sure it's the meniscus. Um I'm not even feeling the pain. Like I know that it's still bothering me because I can't get up and move the way I used to or get on my knees like the like I used to. Um, but I have noticed that the pain has subsided substantially because I'm just riding this high wave for now, a few months.

SPEAKER_00 19:22

Yeah, well, I I absolutely believe that because um they say in a lot of uh reading I've done too about how trying to heal with our minds. Obviously, I think everyone will agree with me that we can't just completely heal our bodies with our minds. We gotta we gotta eat better, take supplements, detox, take medications, go to the doctor, go to the naturopath, or whatever we need to do to heal our bodies. We can't just do it with our minds. Maybe some people can and some people have. I've tried, I have freaking tried and it didn't work. But changing my food worked and changing, you know, things like that worked. Um, but at the same time, when you're in a higher frequency, then you experience less pain and less suffering and less struggle. So getting into a higher frequency, the higher frequencies are like you said, joy, um, feeling like you're gratitude. Gratitude. That's the best one, I think. Gratitude, joy, authenticity, um, happiness, love.

SPEAKER_01 20:23

Yeah, yeah, appreciation.

SPEAKER_00 20:26

Appreciation, yeah.

SPEAKER_01 20:27

Yeah, I agree. Like it can't heal you a hundred percent because we're still we still are suffering in the human condition, and we will always suffer in the human condition. Um, so we'll never be, you know, Jesus or Buddha or any of those people who who can heal, right? Um, but we we can we can do our best to focus on those things, like you just said, Trina, like all those things are really good. Um, and then two, uh one thing that's been working a lot for me is it the intermittent fasting. And I think you said you do the same thing. That's huge. That's huge. Um the body needs time for the stem cell regrowth, and the only way we can do that is by putting ourselves in autophagy. And I've I found a tremendous amount of pain of pain relief just by doing that intermittent fasting. Um, and then doing like a good 24 to 72 hour fast when you can, um, maybe every few months or so. I like to kind of follow up with one of those. Um, it sounds it sounds more difficult than it is, but I think that's too, it's part that's part of training your your brain because like we just think we need to constantly eat and we we don't. And so if we if we can train our brain to have control, we can train our brain to get release some of that pain as well.

SPEAKER_00 21:42

Yeah, fasting can be like hard on people who are uh low weight or underweight, which I find out the hard way. Um, but uh yeah, like a 24 hour fast, anyone can do that, no matter what weight you are.

SPEAKER_01 21:56

Yeah.

SPEAKER_00 21:56

And like what I used to do, I used to do a 24 hour fast every week. This was after my first ostomy surgery because I was just like wanted to heal and I was in a really bad marriage and I wanted to get out of the marriage. So I just wanted to be well enough to get out of the marriage. Yes. And be able to take care of my kids. So I was trying everything. And um the intermittent fasting and the weekly 24-hour fast really helped because my intestines needed a break.

SPEAKER_01 22:19

Yeah.

SPEAKER_00 22:19

Yeah. And uh and also when our body is going toward putting energy towards digestion, it's not putting energy towards healing the other parts of our body that are causing pain.

SPEAKER_01 22:30

Yes.

SPEAKER_00 22:30

So that's another reason why it really helps with pain. Another reason is because when we eat, often the foods that we eat can contribute to like our arthritis and whatnot. Yeah. I notice for me, like sugar gives me arthritis. And there are a lot of foods that turn into sugar when you eat them, like bread and pasta, um, any kind of grains. So those kinds of things can make arthritis worse for me if you know, if I uh I'm eating too much of them and I'm not doing the other things that I do to make sure I'm detoxing my body. Yeah. Yeah. But uh definitely like intermittent fasting is amazing. And also another thing that's really good. Oh, I was gonna say how to do a 24-hour fast. That's really simple. Is you just you eat your dinner, you eat all day, you and you eat your dinner and you stop eating after dinner. So say you have your dinner at six and you finish at 6 30, then you don't eat all night and all the next day until 6 30.

SPEAKER_01 23:20

Yeah, it's not that difficult.

SPEAKER_00 23:22

Yeah, and then at 6 30 you have your dinner. So you're really only skipping breakfast and lunch for one day.

SPEAKER_01 23:27

Yeah, yeah.

SPEAKER_00 23:28

Yeah, yeah.

SPEAKER_01 23:28

And and then and I that when I do that, I kind of fill up and kind of eat more crappy that whole day because just because I know that I'm gonna be craving that if I don't. So I'm like, get it in and then yeah, yeah.

SPEAKER_00 23:43

I don't do that, but I know people who like eat really healthy all the time and then they have one cheat day a week where they can eat whatever they want, you know, and that's what I'm saying. I used to do that.

SPEAKER_01 23:54

So I used to do that, but it didn't work for me. That that weight loss, like trying to lose weight and getting shape for that, that really didn't work for me. And I did it for a long time. But I will say, by doing that, by doing the six days of eating really good and watching my macros, and then one day of eating whatever I wanted, really got me to the point where I could do these these fastings. Cause right now, most of the time I'm only eating between a four-hour window at tops, a six-hour window.

SPEAKER_00 24:20

Yeah. Wow.

SPEAKER_01 24:21

Yeah.

SPEAKER_00 24:22

Yeah.

SPEAKER_01 24:22

It's if but I feel good doing it because, like you said, for the digestion, it's helped my digestion. Like I went through this little bout just recently, but it was just stress is my yeah, that's as my as my MRI shows. So I don't know.

SPEAKER_00 24:37

Yeah, it's how I do how I handle my treats, which it in case this helps anyone since we're on the subject, is uh I'll have my I usually have two meals and a snack every day. And after my meals, yeah, I might have a little bit of chocolate. And that's that's my treat. But I have it right after my meal. That way my meal is all at once, there's no snacking in between.

SPEAKER_01 24:59

Yes.

SPEAKER_00 25:00

And uh and then I get my little sweet treat, but it's not too much, and it's I'm not hungry at the time because I just ate, so I don't overdo it, and yeah, that works for me.

SPEAKER_01 25:09

I do the same. Um, I try to get it in. Otherwise, you're right, like by six eight o'clock, I'm like, I want something. So if you get it in right away, then you're gonna beat that craving. So yeah.

SPEAKER_00 25:20

Another thing, like, I think you're really onto it with the whole fasting for pain, even just like when I started, so I had really bad back pain last week, and then I started to get this cold, and I took like oregano drops in water three days in a row. Yeah, and it almost made the cold go away, but then it came back, and I finally was like, I've been fighting this cold for weeks. I've been trying not to, I finally just said, Oh, I'm just gonna let myself get it and get over it, you know? Yeah, um, but the oil of oregano took my back pain away.

SPEAKER_01 25:52

Really? Now how did it do that? I don't know, but I've heard of that one and I've never used it, but I want to.

SPEAKER_00 25:58

I mean, I the I just think like oil of oregano, it gets rid of like back it's antibacterial and it's um antifungal and a bunch of things. And I've always thought that my arthritis, and I I think my back pain is a lot of it from arthritis.

SPEAKER_01 26:13

Uh-huh.

SPEAKER_00 26:13

I've always thought that my arthritis came from taking antibiotics. So I feel like there's a bacterial component to that makes sense.

SPEAKER_01 26:22

That makes sense.

SPEAKER_00 26:22

And uh, and so I think like it just blasted my back pain away. It was amazing.

SPEAKER_01 26:27

Yeah. Nice.

SPEAKER_00 26:29

Well, there's a lot of show that, yeah, that pain can be managed through like healthy habits, but obviously not always. Sometimes we're just going to be in pain. We just had a surgery or we put our back out or we had a car accident. Yeah.

SPEAKER_01 26:41

Yeah.

SPEAKER_00 26:41

Yeah.

SPEAKER_01 26:42

There's still a reason and a time to have to take pain meds, and then there's a reason in a time to not take them. And I think it's important to distinguish, you know, you know, know what, you know, if you're someone who's already has an addiction or has an addictive behavior, being cognizant going into that, you know, and knowing that, you know, these this could be a huge trigger for you. Um, but if you're not, just knowing that you could become somewhat physically dependent if you don't manage it right. And you may have to manage it right for yourself. You're ultimately responsible for your body, even if you know someone else is telling you different. And, you know, it might just be a matter of, you know, um, yeah, logging it. I think logging it, logging out your symptoms if you're starting to feel differently, and then knowing, like, all right, I need to save one or two just in case, because I might have to break it up a little bit. Like you said, breaking it up. I had to do that too, like just breaking up those higher doses, and um, when you start to feel the symptoms come on and and logging it, and then you know, and then cutting them in half and taking just another half the next day.

SPEAKER_00 27:50

So that's the best way I would say is to just cut the dose slightly every other dose.

SPEAKER_01 27:56

Yeah.

SPEAKER_00 27:56

And then you keep doing that until you're down to you're taking half a milligram for every other dose or whatever, and then and then you don't go through withdrawal. Even then, I'll still feel a tiny little bit of withdrawal, but it's it's like a wisp of withdrawal, and I can yeah, I could just still even function. It's not a big deal.

SPEAKER_01 28:12

But but I also think that people should at some point, if you don't know and you're going through it, you really should go to your doctor and ask about it. Tell your doctor because maybe they can give you something. Like there's Suboxen, I know. I think that's maybe more for people who are at like addicted and have those addictions. I don't know.

SPEAKER_00 28:31

Like, I feel like they should medically withdraw everyone who's on these drugs. Like, they should have done it before I left the hospital. They should.

SPEAKER_01 28:38

They should like, or at least give you the directions so you know what to do when you get home in case.

SPEAKER_00 28:42

But their directions didn't even work. That's the other thing. Yeah, like they to me, at least in Canada, in the area that I live, the pain nurses don't know anything. They don't know what they're talking about, at least not when it comes to diluted. And I talked to a lot of other people who agree with me and have gone through the same thing as me. You know, it's like they're they're still sitting there, they've never been in pain, they've never taken a pain medication, they've never been through withdrawal, and they're judging me.

SPEAKER_01 29:06

Yeah.

SPEAKER_00 29:06

And I just think I wish you could see what it's feel what it's like to go through this because you would have so much more compassion, you know. I think what I want to what I want to say before we we end the podcast is everyone has their own um what like everyone has to choose for themselves how they feel about pain medication, whether they're willing to take it at all, or you know, certain kinds or whatever. Um me personally, I want a good quality of life. Like I I total natural health freak. And I have friends who judge me if I give my kid Tylenol, judge me if I take Advil. You know what I mean? Yeah, and uh I obviously don't care if people judge me, but to me, my qual because I've suffered so much, like honestly, like years and years of suffering where I didn't I didn't know if I would ever walk normal again or have live without pain again or have a normal freaking day again in my life. And I've suffered so much that I just feel like I don't want to suffer more than I have to. No, no. So for me, I go back on diluted when I need to. Yeah. No, knowing that I'll have to wean off of it. Yeah. And I just plan it out. That's just my plan. Um, I choose no pain or as little pain as I have to because I know that when I'm not in pain, I have way better mental health. Yeah. Yeah. And I just my quality of life is so much better. So I do choose pain meds. But I mean, that's maybe not the best ad advice for someone who's in pain for years and is never gonna be out of pain, you know. At least for me, I know that my pain is temporary every time. Yeah. Um, I look at people who are on like pharmaceuticals for permanent pain that they're gonna that they're in for the rest of their lives, and they have to keep upping their doses because it gets they get tolerance to it, and and then they go with through withdrawal if they try to get off of it, and that's how we have quite an increase in even street level addiction, is because of people who started with pharmaceuticals. Yeah, and then when the doctor stopped giving them and that and I did this too, I tried to find diluted on the street. Yeah, and I would I sent people I knew out to try and find dilotid for me on the street when they were turning me down because I was so desperate.

SPEAKER_01 31:21

Which is so dangerous, you know.

SPEAKER_00 31:23

And thankfully they didn't find any and I didn't end up taking it, and I ended up, you know, just going back and forth to the hospital until finally the social worker got them to help me. But um I and at that time I honestly just thought I just needed diluted because it's the only thing that works for my pain. Yeah, you know, and I was even trying to get it on the street, like that should have told me I was going through withdrawal, but I just honestly it didn't even occur to me. And then I like you, I didn't want it, need it afterwards. Once the pain was gone, I just needed to wean off of it. But people who don't get don't get that relief where the pain doesn't go away, I really feel for them.

SPEAKER_01 31:59

Me too.

SPEAKER_00 32:00

And I admire anyone who has the strength to live in pain every day. I I have been there for for years, for three years, I was in pain. And you've been there where you're in pain every day.

SPEAKER_01 32:12

Yeah, I'm still, I mean, I'm still going through it, but not nearly as much. Like I said, I've learned these coping skills that have helped. And I I I I agree. Like, don't live in pain, do what you need to do, but also try other things, like be willing to try other things because um you know you never know what's gonna work for you because everybody something works different for everybody.

SPEAKER_00 32:32

Like, didn't you go to a pain clinic before?

SPEAKER_01 32:35

I'm actually going to another one, yeah. Like getting sent to a new one. But yeah, they kept trying these, they tried uh injections, then they tried a stimulator. But I woke up, this was last August. I woke up from surgery in pain and couldn't feel anything from my waist down. The doctor had to literally come in and just rip them out, send me to a different place to have an MRI because they were worried about something. I don't know. I won't do um, I've I know a lot of people who have had stimulators, the and they they work for a period of time and then they stop working, have to have another surgery, the lead gets moved, but then you also aren't able to have MRIs as you know as much. And that's happened to me before with another stimulator I've had.

SPEAKER_00 33:18

So I don't know what a stimulator is.

SPEAKER_01 33:21

It's um like a it's so there's different ones. I've had ones in my to try to help my urinary and and uh bowel incontinence, and that's like uh they're like wires that are put in to your spine and then implanted as like a battery device where you can control it. Yeah, yeah, that's happened before. And then um I've had that done, and then there's been a um we have to pause it for a second.

SPEAKER_00 33:50

I was like, do this, Nicole.

SPEAKER_01 33:54

Yeah, I'm like, what is going on?

SPEAKER_00 33:55

Um and then they had the stimulators, yeah.

SPEAKER_01 34:01

And you had it for the bladder and then for the Yep, and then from the car accident, I developed that complex regional pain syndrome, which affects my whole left leg. And they have tried uh the injections, and then they tried a stimulator, which is a spinal cord stimulator, so it goes into your spine, and then you wear the pat. Yes, uh it didn't work. That's not doing it again.

SPEAKER_00 34:24

Like I've been suggested to me that I get a port because I get fluids every two weeks. Yeah, I'm like, I'm not ready for that yet. Yeah, no, I'll just sit there and cry while they try to get it in my vein every two weeks.

SPEAKER_01 34:35

Right. It just it makes other things harder and more difficult, like trying to get other tests done. You know, like right now, I gotta I just was on the phone scheduling more MRIs and two PTs. It's it's like it gets tiring. It gets tiring, but I'm not doing I I'm gonna I'm going to a new pain clinic. I'm gonna see new doctors about, but I'm not doing I already told my doctor, I'm like, I'm not doing these spinal cord things anymore. Like it's just not happening. I'm not messing with us.

SPEAKER_00 35:00

It doesn't work and why, you know.

SPEAKER_01 35:02

And I woke up in pain, and then the whole thing.

SPEAKER_00 35:04

I don't even let before my surgery, I wouldn't even let anyone stick their finger up my ass anymore.

SPEAKER_01 35:08

You're right, right?

SPEAKER_00 35:10

I was refused. I was like, no more.

SPEAKER_01 35:12

Yeah, I don't blame you. I don't blame you. I get I feel the same way. Oh, yeah. There's a lot to be said, but I think ultimately it's it is it's learning how you can, you know, you're right, like what you need for you, and it's gonna look different for everybody.

SPEAKER_00 35:28

But um so anyone who's watching this and made it to the end, if you have a pain medication story or any kind of pain story, please post it in the comments and share it so that other people can you know relate to you and see what they're going through. And we're all going through this journey, this health journey together.

SPEAKER_01 35:47

Yes. Thank you, everyone. Thank you for listening. And we don't know what our next episode is yet, but we'll surprise you. We'll always quit to surprise. Bye.