Gabes battle with Adiiction vs depandcy!

In this episode, we interview a returning guest, Gabe, who jumps into the topic of addiction vs. dependency. tune in as Gabe tells his captivation store about what it's like being prescribed medications from a young age, coming into America. 

To learn more visit www.mssctf.org. 

Transcript

SPEAKER_03 0:06

Thank you to all new and old listeners for tuning into the third season of our podcast, In Our Blood. A special thanks to the Metro Seattle Sickle Cell Task Force and the Best Starts for Kids for sponsoring another year of insight into the world of Sickle Cell. This season we will be diving into the subject addiction versus dependency. So let's hop into it. Today we have a new guest with us today, Gabe. And then we have Alex with us today, and he's going to give us a little bit of a medical professional side of what we are talking about here today. Hey there. Glad to be back. Yep, glad to be back. Good to be here. All right, Gabe, we're just going to start you off with a question of the day. Can you give us can you give us a song or an artist that you've been listening to this week that you're trying to put everybody on to?

SPEAKER_02 1:08

Uh be honest. Be honest. I don't know. I've been I've been listening to Boss Man D Lo lately, bro. Boss Man D Lo. Yeah, yeah. He's that he's a Memphis rapper, I think. Yeah. So I don't know. I just been jamming that to him. Um couple songs that I like to blast in my car and as I'm driving stuff.

SPEAKER_03 1:26

So yeah, it's a good, it's a good artist. And for those of you who have seen previous seasons, Gabe Gabriel here has been on before. And you know, he's he's from Memphis. So, you know, I'm sure it's close to home for you. Yeah, yeah. Yeah, close to home.

SPEAKER_00 1:42

I was I was gonna say it's probably a little bit different than being up here with our dark and dreary and rainy and cold in the Pacific Northwest.

SPEAKER_02 1:49

I mean, I I like to have some some weather here and there, you know, because over there it's just humid and sticky a lot. So having something nice and cool and some um some east is a good mix in Washington.

SPEAKER_00 2:03

Yeah, right. We'll take the sun without the heat and the humid humidity, right?

SPEAKER_03 2:07

Yeah, yeah. Yeah, I feel like that's the reason why, or one of the reasons why I feel like I needed to move from New Orleans to here because that's pretty No, bro. It's crazy. It'll hit you. It feels like you just got out the shower, and then you're like, it's outside.

SPEAKER_00 2:24

I need another shower just to walk outside.

SPEAKER_03 2:26

Yeah, yep, yeah. All right, well, we're gonna get into our first question of the day. You ready? Let's get it. All right, all right. So just to get us started, just so that we can get to know you a little bit more, can you give us your story living with sickle cell and how medication sort of shaped that reality for you?

SPEAKER_02 2:45

Yeah. So I was born with Sigas, obviously, you know, growing up, I grew up in Africa. I was born in Africa, you know, life growing up was kind of hard, you know, especially with like, you know, having pain and not understanding what's going on, and then later finding out that, you know, my body's kind of like works differently than others, you know, with Sigascell and all that. You know, as I was growing up and aging, you know, I was learning to deal with it and like understand it more and like just kind of feel it and like so I can be able to like, you know, know and tell and like tell myself when I need to go to the hospital when my body's like, you know, struggling. So you know, I've been going to the hospital for like since my whole life. So and getting medicines and all that, you know, it can be kind of hard on the body, especially when you're just constantly getting like all these like narcotics and like like stuff, you know. It can like make your body kind of feel more sick, you know, in a different way, even though it's helping your sickle cell, helping your body with pain, it's still kind of, I don't know, like it just changes your your body in a different, like different feelings.

SPEAKER_00 4:02

It's a it's a double-edged sword. Yeah, right? Like I'm taking this, oh, whether it's an opiate or like a strong pain reliever of another, of another sort, I'm taking this medication because I'm in this physical pain, but then it messes with my stomach. It messes with my head. I feel tired, I'm exhausted, things don't quite like I'm not as sharp as I am when I'm not taking the medication, right? There's a lot of things that can come with it, both on the physical side of things, but also the psychological piece, right? Like, you know, especially because it sounds very similar to what you were describing, but a lot of a lot of people dealing with chronic pain, like sickle cell, they're given pills to come home. So when you're young and you're walking around sounding like you have your your pockets full of change, kids are asking you why. And you're like, oh yeah, I guess I just have this bottle in my pocket with a bunch of different pills, and not everybody else has to deal with, right? And the and if I go outside or if I play with my friends, or if I do something active, I'm gonna have another crisis. So I have to take more pills, but then that makes me sick. And so it's this in a different way. So it's this cycle that oftentimes you get for people, and it's really, really difficult to figure out how to navigate that without either being in immense physical pain all the time, or being in this, well, I guess I'm just nauseous or you know, kind of lightheaded, or whatever it is that's the the the negative side of taking the pain medication.

SPEAKER_03 5:28

Yeah, no, totally agree. What age do you feel like, or do you remember, was the first time you feel like you had to walk home with some prescription medication?

SPEAKER_02 5:38

When I came, basically when I got adopted and came to the US. When you came to the US? When I was like, I was like six years old, you know. Six years old. Because literally when I came to the US, you know, like a couple days later, I had to go straight to the hospital straight to the emergency because my body was reacting differently with the weather and environment and being on the plane, high altitude, yeah. It activated my signature and I had a big brain crisis and I had like acute chest. Like it was bad. I was constantly having fevers, and like I was like, you know, I was in the hospital for like weeks and weeks. So going home with prescription wasn't like weeks after being in the hospital, but getting like like the strong, like like opioid prescriptions. Yeah, I was like six years old. So that was like my time. So yeah, and they'd be going surgeries and they'll be giving me anesthesia. So my body's been through all of those, like those strong medicines. And it has like, you know, like you said, it's it's changed my body psychologic psychologically, physically, and I feel more tired and stuff. So it's time constantly having to like, you know, like like have those, like have like medicines that you you mentioned and stuff. And so it's hard.

SPEAKER_00 7:01

It's hard. Because then, yeah, because you feel it can oftentimes it it sounds very similar to what I hear from some of my clients, right? Because, or I should say patients, because you know, I I work at Seattle Children's Odessa Brown Center, right? And I do co-occurring therapy. So I do a lot of mental health and substance use issues for for the the families in the in the patients. And I will tell you, it's very common that I'll hear for for clients that have or patients that have long-term chronic pain, that they say exactly that. They're like, what? I don't even know if I want to take this medication. Because if I do, sure, it'll solve this, but I have all these other problems. And then I can't, I can't, if I'm 16, I can't drive if I'm taking you know these if these medications, because it's intense, it's a bit high grade opioid, right? If they're taking the lotted or others that impair their their their abilities, it's a dep it's called a central nervous system depressant, so it lowers your activity level all throughout your body. You can't drive like that. You can't really go out and participate very often. It becomes difficult to be active. You're the one who you want to play football or basketball or soccer and you can't. You want to go to a you want to go to a party and you have it planned on the weekend, and then Thursday comes around and you get banged with a crisis, and it's like, holy crap, now do I just take all this medication to try to force myself to go to this thing because I want to go, but then I'm sick at the part, like it's a very difficult thing to go with, and it's it's really hard to navigate that, especially once you start at very often young age, six, seven, eight, like it becomes a lifetime thing for a lot of people of navigating. Well, what does this mean? Am I like what does it mean for me and how do I live my life? It's hard.

SPEAKER_03 8:51

And you know, dealing with that, I'm sure there's times, or maybe there wasn't, but do you feel like there was times where you tried to manage your pain without medication?

SPEAKER_02 9:00

Oh, yeah, a lot of times, a lot of times, a lot of those times, you know, sitting here now, I regret not doing because you know there were times where I really like should have listened to my body and gotten the help and taking my medications, but there was a lot of times where it's like, you know what, you know, I'm I'm gonna try to wing it, you know, like try to try to fight. Sometimes I I think I can win over it, you know, but then it ends up, you know, I end up succumbing to my, you know, call it pride or whatnot, you know, because sometimes like I want to feel, you know, like having the feeling of not having to constantly take medicine and stuff. So but you know, but then at the end, you know, come to the conclusion that you know, as much as I don't like it, you know, this is the only thing that can help me besides like eating healthy and exercising, because that will help a lot with your body maintaining controlling your sickle cell crisis, but at the same time, it's like, you know, bad, yeah.

SPEAKER_00 10:08

Well, well, Gabe, if I can spend a little bit, just a quick comment on that. You should be really proud of yourself on that last piece because what I hear you say is you became an expert on your own body and your own sickle cell in terms of what worked and what didn't. If I'm exercising, if I'm eating right, if I'm doing these things, I seem to have less chances of an incident occurring. And if they do, I can manage it a lot better than say if I'm doing the opposite and going to the ER a lot, trying to take more and more pills, and then running out before the prescription ends, and then having to try to convince somebody, oh, I do need more medication because I I ran out faster. But again, oftentimes, to put it bluntly, when you go to an emergency room or you go to a doctor as an African-American male, sometimes they look at you funny when you're asking for pain pills, right? So then it's like, well, do I really need to deal with that piece of it? So I find my own. So becoming an expert in your own body and your own management of the sickle cell disease, you should be really proud of yourself because that's harder than what it seems. It's very difficult to figure that out without going into really increasingly bad ways of doing it, whether other kinds of drugs or other things that don't put you in really great headspace. Yeah.

SPEAKER_02 11:29

Does that make sense? Oh, yeah. No, and I appreciate you for, you know, you know, for that compromise.

SPEAKER_03 11:35

Yeah. You know, we've got to give credit where credit's due, you know. And if you're trying to look out for yourself and make sure that, you know, you're taking care of yourself and trying to live a life without medication and stuff. Not saying that you should or shouldn't, but just the fact that you tried to do that, you know, says a lot about who you are for sure. Now, I hate to counteract that question, but is there any time where you feel like you might have overused medication, whether it was the doctor or yourself who decided I was just gonna, you know, take more, a little more than I should have?

SPEAKER_02 12:07

Yeah, no, I've definitely had a lot, some, some moments of that where, you know, I take like if say I'm having a pain crisis and it's like if I don't have any like stronger medicine, you know, it's like the only payments I have is like I'd be profane all the time now. And then I'll take the amount I need to take, right? And then I wait the amount I need to wait, and then if I notice that the pain isn't going away, it's getting worse. Then and sometimes I just, you know, it's like I can't be patient enough. So I I'll take more than like without waiting the amount of times that it it requires for you to wait to to take because the pain is just like so much, and sometimes I'm just too like like stubborn to like go to the hospital or ask for help because you know it's like my body's in pain. I don't want to have to go through the whole like you don't want to go through that process, yeah, yeah. And even walking and just being out, it it makes my body more in pain. So it's like trying to figure out what to do, either just be like, all right, I'm I'm gonna I'm gonna actually ask for help and go through it because I really need like the help um from like stuff, or it's like you know, like I'm gonna just keep trying to take more of this, but it's not helping. So I've definitely had those times where it's like I take it more than I should have. And and that's the piece where it messes up my body and my brain. And sometimes, you know, even when I don't think of think about it, you know, I'm harming myself why I'm thinking about getting trying to get rid of this pain. But at the same time, I'm not being patient enough because the pain is just too hard.

SPEAKER_00 13:55

You're in pain. Yeah. And it's hard, right? Like one of the things we know about how our brain works, when we're in pain, our our bodies and brains do a really good job of sending signals that say there's a problem, right? Regardless on whether it's it's a chronic pain issue or an acute pain, like you snub your toe or you break a bone or something like that. The body does a really good job to say, hey, there's an issue here, right? The problem is oftentimes it doesn't do a very good job of telling us the pain is okay, right? Like we put something in, we're gonna get through this. The signals still go through the same.

SPEAKER_04 14:32

Yeah.

SPEAKER_00 14:32

And so we are in this spot where we're in pain. We don't want to take the opiates because or the the medic the medicine because it puts us again, it's that double-edged sword that we're talking about. So maybe I have something I have to do, or there's other things, or I don't, I'm just struggling with it, so then I'm in more pain. And then I finally say, okay, well, let me do this, and it's not letting it's not relieving it. I'm still stuck in like, sure, maybe it turned it from a nine to an eight and a half, but that's still an eight and a half, right? And so now I'm at even a further issue where it's like, okay, do I go past what the this little label on the bottle says when maybe that was months ago, weeks ago, whatever it is, last time I talked to somebody about this, who yeah, a million different things could have happened by now, or do I actually take this, right? And then see what happens with it. It's a it's a really hard spot to be in. And it's not like oftentimes, some of the times when you I talk to a lot of my patients, they'll say, you know, they they beat themselves up about it, right? And they'll say, Oh, am I an addict now, or am I just a pill pusher, or what's wrong with me? Why did I like and a lot of this self negative self-talk about it, and it's understandable, but at the end of the day, what I always try to tell people is no one's perfect, right? Everybody learns through figuring out what works for you and what doesn't. And it when you make a choice on those pieces, it's about walking through well, what did it serve me or did it hurt me? Yeah, right? Did this get me to what I was looking for and help me get through whatever it was that I was going for, or did this cause more problems than it solved?

SPEAKER_04 16:11

Yeah.

SPEAKER_00 16:12

And you know, that just that comes with experience and sometimes, you know, bumping your head on the way of that journey, figuring it out.

SPEAKER_03 16:20

Right. And even think of it as a as a in a younger, a younger man or a woman's perspective, you've been told all your life that these medications are here to help you. And obviously in pain, you're acting out of desperation. Why wouldn't I take a little bit more of this medication if I know it's gonna help me? Yeah, and you know, that's a very, I feel like it's a very dangerous thing to have or or to a thought process to have when you're younger, but it's also a very justified one.

SPEAKER_04 16:51

Yeah.

SPEAKER_03 16:51

Because we've had people telling us this for a long time. Oh, yeah, definitely.

SPEAKER_00 16:57

Since you were six. Yeah. Here's the medic medicine. This is what you do when you when this happens, you take this, and if it's not enough, take more, or take this other type of medicine, or raise your hand and then get like the intravenous version of the medicine as it gets, you know, put into your veins. And so just ever increasing amounts or intensity of the same type of opiates and so or payments. So it's really, yeah, it's a it's a very slippery slope that people find themselves in.

SPEAKER_03 17:29

Yeah, different. And I think that leads well to our next question. Do you feel like that you being the use of prescription drugs have led to you developing a a dependency or addiction or maybe both?

SPEAKER_02 17:43

I would say like, yeah, it I would say more of like a dependency and a little bit of the other one. But you know, I try to limit myself, you know, like I said, you know, trying to understand my body more to know when to have this or do this, or not when to have this or do this, you know. But it definitely is a dependent thing, I would say, in my life. There's many times where I'd go like half a month without not even just paying medicine, just my regular medicine to help my sickness. So I'll go without taking it, you know, and thinking, you know, I don't need this, you know, why not? You know, all those thoughts. And but then I it turns out I do need it because now I have a pain crisis. So that is definitely something that will have to be a part of my life because my body needs the medicine, not just for pain, but like I say, for like to help my sickness, so you know, maintain uh body and everything. So yeah.

SPEAKER_00 18:51

A hundred percent. And what I will what I will say, Gabe, is that's a very vulnerable answer you just gave. Yeah. Because that what you just said, it's not is is so true, because that line of dependency or addiction is not bright red clear. It oftentimes is fuzzy and it can it can change from as you progress and as things change in your life, it can move, and it's different for every person, right? And that's a it's a it's a not easy answer to have when you have something like sickle cells, right? And the really hard part about it is a lot of professionals in the in the substance use or mental health field, they come from they come from this perspective of traditionally other kinds of of drugs and alcohol where it's it's very obstinate or you have a problem. So if you think you have a problem, just give it up, and if you can't give it up, then you have a problem, right? And when you're dealing with chronic pain and especially chronic pain as significant as sickle cell, that's just not an option.

SPEAKER_04 19:58

Yeah.

SPEAKER_00 19:59

Right? There's it's going to be in your life, there's going to be pain medication of one type or another that you're going to have to utilize as part of your medical care. Really, what that means then is having a difficult discussion with yourself and the loved ones around you about what's going on here. Are the pills controlling me or am I controlling the pills? Are these things, am I making decisions not that are for me or that serve me? Or am I making decisions and choices that further my use, that give me more access, that allow me to take more frequently the things that I'm looking for, the the stuff that I put as my primary thought process and actions that I go on on my day about. Is that really in furtherance of things that I want or things that the pill bottle wants? And that that's a really tough thing to do, man. It's a really tough, difficult thing to do.

SPEAKER_03 21:00

Yeah. And you know, I hate to dig a little deeper with your butt, and you know, we appreciate you again. We really do appreciate your honesty here. Judah coming in with the hard question. Coming in. How do you feel like for you, you did identify which one is which for you? How do you differ de refereate from being dependent and being addicted? So, like can we say that question again?

SPEAKER_00 21:30

It's a tough question. It's a it's a it's a very tough question. And is it okay if I kind of jump in and word it a different way from like a clinical perspective? Yes. So when we talk about medication, right? One of the ways that we try to set this line between again, are the pills making this decision or am I making this decision? And in other words, am I in my active addiction phase or am I dependent on these pills for other reasons, i.e., pain management. Management, right? One of the ways we look at that is to say, where is it for me? Like, how do how do I make that decision? How do I know? Right? If I really wanted to answer that question, how do I figure that out? What do I do? Do I talk to myself? Do I talk to a loved one, a family, a member, somebody I trust, or do I just go by, you know, my gut and or do I even not think about it? Because this isn't even on the radar of something that could pop up for me. Does that make more sense?

SPEAKER_02 22:32

Yeah, yeah, that that that makes a lot of sense. I I would say like the last two that you say. Hmm. Yeah.

SPEAKER_00 22:39

Talking, talking to people or not, uh, or maybe kind of just living your life and not putting a lot too much thought into it.

SPEAKER_02 22:45

That and you say something like how it's like, this is this is what like what what my my body needs.

SPEAKER_00 22:53

Like you say something like that, something where it's like you're following what your body needs, listening to your body and not letting it get too too out of hand, yeah, beyond you. Did I hear that right?

SPEAKER_04 23:04

Yeah.

SPEAKER_00 23:05

Yeah. And that's as good, you know, there's there isn't a there isn't necessarily a right answer for it because again, it's a very personal journey. What can work for one person is going to be vastly different for the next person. And then the third person comes along and they're like, both of you two are dumb. I'm doing it my way, right? So it's it's not necessarily one correct answer to how to make that determination. What I always tell people is my only recommendation would be to get people that you trust as part of your team to figure that out. Right? Because at the end of the day, when you're in the thick of it, it's very and you're in that pain crisis and it or you're hospitalized and you've been there for days or weeks, even, sometimes it's really hard to make a honest be honest with yourself. I mean, it's hard for people to be honest with themselves in general, right? Like I tried to keep my hair for years, I shouldn't have. So I finally had to just look myself in the mirror and be like, let's call it, Bub, right? So even generally, it's difficult for people to do that, but especially when you're in the thick of it. So looking around to people that you trust and honestly believe their opinion and aren't gonna, you know, feed you a line or or play with you on those kinds of things, that'll just be straight up. Gathering those people close to you and leaning into them is is the only thing that I recommend, if that makes sense.

SPEAKER_02 24:29

Oh, yeah, that makes a lot of sense, and that's actually a good, like, and like a good recommendation. So I output that in that, and you know, yeah, I like that.

SPEAKER_03 24:40

Yeah, and you know, the decisions, although they are hard, they shouldn't be that hard. Yeah, you know, they really they really they really shouldn't be that hard. So, you know, you you you you gotta have respect for you know how other people handle things, but you also gotta have respect for yourself, you know. Yeah, you know, I'm putting in the effort to know what is good for me, you know, and it is yeah, it's as simple as that, really. Yeah, yeah, but yeah. So my next question for you do you feel like there's help available with your doctors? Do you feel like you can ask to have a better or a conversation with them to really talk about how it's affecting you mentally, or do you feel like it's more of a transactional piece where they just try to offer you this medication and then call it a day?

SPEAKER_02 25:32

I'd say, I'd say it's it's definitely the last one you said, most like half the time, it's definitely that transactional. Yeah, you just give it a pill. Yeah, but like I definitely would also say that I do have a good team, doctors, nurses, like like primary care provider, all that. You know, I just need to, you know, like I guess you can say like come forward a little more, you know, like be more honest, you know. I'm I'm no, I'm already honest and stuff, like how I feel and how my body feels when I'm talking to my my support team. But like I feel like kind of being like more open the psychological side too, you know. Like how you said, like opening up and like like having like that good like support team. There's they've definitely offered it to me, you know, a lot of that stuff. Um, a lot of that stuff I've you know gotten into and gotten the help I needed and stuff. And there's definitely a lot more that I feel like could help me a lot more that I just I guess I haven't really, you know, stepping up for more because you know, I guess.

SPEAKER_03 26:45

Yeah, it's a hard conversation to have.

SPEAKER_00 26:47

Yeah, yeah. It's super hard. Super hard. And oftentimes when you're when you're dealing with either a primary care doctor or a medical doctor, it's not necessarily, you know, in their wheelhouse to bring up therapy or you know, talk therapy at that. It doesn't mean that it doesn't. And it it there are good doctors, and it sounds like you have a great team that makes you feel supported and go through it, but all too often, especially with chronic pain, it becomes transactional. They know, they know quote unquote what the solution is. Let's give you those things. We get it, we get it, we get it. Let's get you in, get you out, get you your answer, and then I can move on to the next one. And I promise I won't go on my my soapbox about healthcare and how to how to make it better for people, right? But what I will say is that transactional sense of engaging with the medical field when you have something like sickle cells makes it even more difficult, like a higher barrier for you to engage in ways that are supportive of whatever decisions that you make for your own body, right? If you know that I'm gonna have to go in and they're gonna just treat me like client 75, right, and not care, and just slide over a pill bottle, great. Now that makes me feel even less of a human, right? I'm just a just a number, just a body, just a thing. And so it makes it even more difficult to engage with those services that again you need if it feels very that way. So it's hard. Yeah, but I'm happy to hear that you got a good team.

SPEAKER_01 28:22

No, yeah, yeah, definitely. I love my team. That's good.

SPEAKER_03 28:26

In what ways do you feel like the medication has positively impacted your life?

SPEAKER_02 28:31

Oh, yeah, a lot of ways. You know, talking about like medications for like my sickle cell, it's helped me have way less pain crisis than I would have normally had like years ago. You know, I I get like what like two, three pain crises, like once or twice a month or every couple months, you know. So it's it's definitely helped me out a lot, even though it's a lot of that dependent piece, it still had a lot of benefits for my body and my you know, my sex cell and and and some like psychological way too. So yeah, it's it's there's been a lot of times it's been benefiting and helped out a lot. So yeah.

SPEAKER_03 29:18

That's good. And you know, again to counteract that question at the same time, what ways do you feel like it has negatively impacted your life, whether it's side effects mentally or physically?

SPEAKER_01 29:32

Yeah, it's I've also had a lot of those too, like have what we've been talking about, like where it's it's impacted me like physically and mentally in some in some ways too.

SPEAKER_02 29:45

So like it's made where my body depends on it more than than if than if like certain circumstances and stuff, but yeah, I've definitely had those moments where my body like it's like you know, I can't really go on my life without needing this, yeah, that's and it's like you're feeling extra tired, you know, yeah, definitely me especially.

SPEAKER_03 30:12

I there was a time where I was I was taking prescription medication and I felt like you know my mood was changing. I felt like I was treating people around me a lot differently. Yeah.

SPEAKER_00 30:27

Irritable, irritable, stomach aches, constipation, you get cold sweats. Yeah, yeah, it's really hard, right? Like those things are real. And again, there's no the unfortunate reality is there's no magic, quote unquote, pill that makes everything right with no costs.

SPEAKER_04 30:48

Yeah.

SPEAKER_00 30:49

And so when you when you take those meds, even the benefits, they they it's a double-edged sword.

SPEAKER_04 30:55

Yeah. Yeah.

SPEAKER_03 30:57

Do you feel like there are any specific changes that you wish the medical field would have and when it comes to prescribing medication, ways that you feel like it would be better for you? I I wish I wish I could sit down with my doctor and really talk about how this makes me feel.

SPEAKER_02 31:36

I wish I had a more like easy way. And they're all like things, you know, like apps and all that, you know, and it no, it is it I it helps, it's it's helpful, but like I wish it was there was a more like easier stuff where because there's times where like I needed some refills on some medication and it's like it's blocked, or it won't allow me. Yep. I have to go through this and talk to this doctor and then go through that, have this doctor go through all this just to unblock it, and then it's like and then that doctor's not in, they're on vacation or with the patient.

SPEAKER_00 32:09

And so then you have to go talk to this other doctor who doesn't know you and then treats you like a stranger, and then is asking you all these uncomfortable questions, but you have to answer it because you need your history, everything yet.

SPEAKER_02 32:20

So yeah, I wish stuff like that, and also like in some like hospitals in ER. So, like, you know, like say like if I'm going into the EO because I'm having a pain crisis, there are some hospitals where they do good and they understand what sicker cell is and what the patients go through, and they understand that, you know, because there are a lot of doctors I've had where or even heard them say, like they were like, you know, like they'll be thinking people with patients would just come in here for medicine and stuff, and they didn't really understand like that what tickest type, most doctors I've talked to, they didn't know what sickest was. So I had to like kind of explain to them and stuff. And so I I just wish there was more like a way of spreading the the disease out to more hospitals. So it's not just wait, yeah, it's not just this hospital only knows ticker stuff and this hospital doesn't. And if if you don't have access to this hospital that only knows cigar and you only have the one that doesn't, it's it's just kind of like it's a mess. And it's right.

SPEAKER_00 33:25

Wait, you don't like having to explain your disease to a medical professional who should know about your things? Wait, that's a that's that's that's wait, what? Like that's that's very true. And it's an unfortunate reality with with sickle cell, the more that I'm finding out and the more that I'm getting immersed in the in the sickle cell specifically. I have a long history of chronic pain and kind of managing that with with with my patients, but sickle cells uh is a little bit of a learning edge for me. But what I will say is the more I'm getting to it, the more I'm seeing, yeah, there that is a real experience for a large portion of the community, is maybe they're on vacation, maybe they're out of town, they're not at their local hospital or pharmacy, and those experiences vastly change and alter how they they engage with the medicine that they need. And in turn, from a psychological perspective, when you have those negative experiences, right, sooner or later that's going to uh impact how you view yourself, right? If I go to the doctor six times and five out of those six times they treat me like I'm a person who's just seeking pain pills to get pain pills, right? Then the sooner or later that's gonna make that's gonna impact how not only I see myself, but how I engage with the medical field.

SPEAKER_04 34:44

Yeah.

SPEAKER_00 34:44

And then it's like remind me not to do that again. Yeah. Right. And so, yeah, that's true.

SPEAKER_03 34:51

And it's discouraging to see that you know, these people are prescribing something that is supposed to interact with your body and they don't know anything about the disease.

SPEAKER_02 35:02

You know, and that's like also some reasons why since I have that that battle, thought battle with me of like if I'm in a pain crisis, that going to the hospital when it's like sometimes like I don't want to go because then you know I can I know how I'm gonna be seen. Yep. Because they're gonna think he's back here the second time in two weeks, third time in two weeks, he's probably just lost some some some pain medicine. But it's like so that's why I be having those like like like battling thoughts, but it's like, you know, I don't want problems. I just stay home and try to deal with it myself. You know, right.

SPEAKER_00 35:46

Even even if it puts me in like severe agonizing pain and I have to miss things and miss out on important things that I want to do or that I want to participate in. Yeah, I would rather, I guess I'm gonna do that because I don't want to get called an addict again to my face by another stranger.

SPEAKER_03 36:04

Yeah, or it makes you want to take other medication that is not prescribed. Yes. It makes you feel 100%. It makes you feel like, hey, no matter what I do, they're gonna see, see me as a drug seeker, you know, I'm I get what I need from wherever I need to get it.

SPEAKER_00 36:20

Yeah, you know, right. Let me smoke a little weed, let me take this other from a buddy of mine, right? That I know has got something 100%. Yeah, yeah. People will find ways to make themselves feel okay if they if they're if the healthier way or the way that the medical field knows is the is the one that we agree upon, if they don't have access to it for whatever reason. They don't have access to it, they will people will find ways to make themselves feel okay. And that's the last thing we would want as a medical community. Oh, yeah.

SPEAKER_03 36:53

Yeah. And it's hard because, well, first of all, you've been taking all of this from a young age, just to summarize all of this, and then you get older, you have to go find your own medication. People see you as a drug seeker, so then now you had to go seek drugs from another place, or you're taking too much from the bottles that you get at home. Um this full circle. Yeah. And almost as if the system created you, yeah. And that thought process in your in your mind, you know. Yeah, yeah. And that's sadly that's the case for I feel like for a lot of people. Oh, yeah, definitely. Yep. I've seen that happens even within myself sometimes.

SPEAKER_00 37:36

So 100%. That's true. And I know this isn't related to sickle cell, but it is chronic pain, right? There was a study that came out, I want to say mid-2010s. I can't remember the exact date of it, but it it stated that 80% of intravenous heroin users started off with using opiates for a legitimate chronic injury. Broken back, broken arm, car accident, something, right? Which again shows if I don't have access to the things, sooner or later I'm gonna find my own things, which will lead me down the road of getting intravenous heroin. So it's a it's a pernicious thing, and especially with sickle cell, that it's it's falling into those same areas when the medical community does is not meeting the needs of the of the patients.

unknown 38:24

Yeah.

SPEAKER_03 38:26

Well, okay, thank you so much for joining us. We have one last question for you for the day. What is one key takeaway that you want the public to know for about you, or piece of advice that you have for the people listening?

SPEAKER_01 38:40

A piece of advice I say that I've learned and gone through myself is no no matter like no matter the the situation that you have or that you were born with, you know, even like it may make you look different than others.

SPEAKER_02 39:02

You may have to do certain things that are different from other people, like constantly taking medicine or whatnot. You know, even if it makes you feel like like you're weaker or like you're not you're not enough, you know. I would just say one thing that, you know, just because you have a disadvantage doesn't mean that you're different from everybody. Like if you have to take more medicine than than normal people most people, you know, it doesn't mean that you're less than who they are, you know. And sometimes you can see or think of it as a way of, you know, I'm doing something good for myself, you know, for my body, you know, even if these medicines can affect me psychologically or physically, you know. Just listen to your your mind and most definitely listening your heart when when it comes to certain situations, and don't let that psychologically put you down. So, you know, keep going, keep fighting, and shit, get some ass, man.

SPEAKER_00 40:09

That's right. Yeah, all right.

SPEAKER_03 40:12

Well, I thank you everyone for tuning in to another episode of our podcast in our blood. Again, a special thanks to Alex for being on, and a special thanks to Gabe, and we will see you guys next time. Peace. Thank you for tuning in to another episode of our podcast in our blood. If you want to learn more about Sicklesol, please be sure to check the links in the description below. And remember that your disability makes your ability shine so much more brighter. Peace.