Devante's message from the hospital!!

Local rapper, the" PreacherTHA" Devante, shares his journey and thoughts on how medication affects his life with sickle cell disease. We also dive into the importance of cultivating one's relationship with their practitioners. 

To learn more visit www.mssctf.org. 

Transcript

SPEAKER_01 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. We have our co-host with me today, Alex, and we have our new guest with us today, Devante. Devante, do you want to give us a little bit about yourself, name, career, occupation?

SPEAKER_00 0:49

Okay, so my name is Devontae Guest and from Tacoma, Washington, born and raised. My career, I actually make music. You can find me on basically all streaming sites. I'm working on trying to put a video together. It'll be my first one. That'll be on YouTube within the coming months.

SPEAKER_02 1:16

So what are where how can we find you? Like what's the is it just your name, or you got something else that we can find you under?

SPEAKER_00 1:23

Uh it's under the preacher, T H A and then Preacher or under scriptures. The S is a dollar sign. Oh, okay.

SPEAKER_03 1:39

Okay.

SPEAKER_00 1:39

I'll have to. Either one of those, it's both basically me. I was kind of going through a different set of names that I like the most. And the preacher kind of stuck because a lot of people started like had a couple people call me that, and I was like, oh, maybe that's that's actually the name.

SPEAKER_01 2:02

So yeah, I feel like that's how it goes sometimes. My people in middle school for some reason would call me Jay Dizzle. It was really yeah, and I used to make science videos back then.

SPEAKER_00 2:15

Yeah, science videos, yeah. Now, were you like what were you into? Like, what kind of science? Because I know science is like broad.

SPEAKER_01 2:26

Yeah, I did mainly biology, and I was really interested in marine biology at the time. Yeah, so don't YouTube J Dizzle by Marine Biology, YouTube.

SPEAKER_02 2:36

Don't don't do that.

SPEAKER_01 2:38

Don't please don't do that.

SPEAKER_02 2:40

I promise, I promise.

SPEAKER_01 2:43

Yeah, I don't even know if it's on there or not, but somebody could have posted it. Sure. Yeah.

SPEAKER_02 2:48

Well, yeah, I was gonna say, I'm an identical twin. So my whole life, I just got used to being called the wrong name my whole life. So I just respond to any time someone yells at me in my direction or feels like it's in my direction, I just respond to it. Oh, what was the name? Grant. Grant. So I got Grant. You're a twin identical twin. There's another, there's another bald white dude running around Seattle.

SPEAKER_01 3:12

Yeah. Well, I'll I'll keep a lookout for Grant.

SPEAKER_02 3:16

Grant, Gralics, Ferris, Twin, that guy. Just the all the things that were around in it. That's what I got for most of my life.

SPEAKER_00 3:25

That's funny. That's kind of crazy how like I I have a set of friends who are twins, and it's almost like every twin gets caught twin for some reason. I don't know why that is. That's kind of crazy.

SPEAKER_02 3:40

Yeah, it yeah, it it's a thing we all share, all twins, all twins.

SPEAKER_01 3:44

Yeah. I'm that's kind of cool. An Irish twin. It means you're like a year and a half years, right? Yeah. And I used to get confused, not confused with my sister, but we used they used to say that we looked alike until we got older. So yeah. Yeah.

SPEAKER_02 4:00

Well, thank you for joining us, Devontae. I know, like I said, it's we really appreciate it. So I know we got a couple things to talk about, but I know one of the things is kind of like your journey with sickle cell, right?

SPEAKER_04 4:12

Yeah.

SPEAKER_02 4:12

So walk us through a little bit of what that's like for you.

SPEAKER_00 4:17

Where do you want me to start? Because it's it's kind of loaded.

SPEAKER_01 4:23

We'll start with you know, your early childhood up until adulthood, typically around your your experience with like prescription medication.

SPEAKER_00 4:33

Okay, so I was basically normal or felt normal up until I was like six. That's when I had my first sickle cell crisis. I didn't know what was going on with my body at the time. And my mom kind of like, I asked her, I was like, what's you know, what's going on? Why am I like different, basically? And you know, she's a mom, so she gives you the mom answer to that question, and she was like, You're just special. That's basically all she explained to me, and then as I got older and kind of kept getting sicker, I just basically learned that I had sickle cell and would just basically just ask questions as I was basically growing. Um, so yeah, I had my first sickle cell crisis when I was six, and it it just felt like torture basically. Like that's the best way to explain it to other people.

SPEAKER_01 5:47

Yeah, right. Yeah. What was your uh first ever prescription medication that you received?

SPEAKER_00 5:56

If I remember correctly, it was probably like some form of morphine, yeah. And then morphine wore off really quick. I remember telling my doctors, like, hey, this isn't working around probably like 11 or 12-ish. And then I got moved to Tylenol, either Tylenol 3 or 4, I don't remember, but it's basically Tylenol with codeine in it. Yep, yeah, and then from there it went it went when it was it, it went from that to Vicodin. And then from Vicodin, it was basically like either that or oxycodone or hydrocodone, and then the next step was basically like dilatted, and I was on that for most of my adult life. Um the delauded pill form actually stopped working for me uh when I was like 24-ish. And I just told my doctor, I was like, hey, this isn't working, or it's not working anymore, and it's actually making when I go to the hospital more difficult because the delayed pill form and the delight is basically the same almost. One just works a little faster. So I told them, like, hey, just take me off of the Delatted the pill form because it's making when I go to the hospital a lot harder. So they kind of switched me from it, and then ever since I've just kind of been trying to balance what works and what doesn't.

SPEAKER_02 8:12

Right. And that sounds really hard, man. And that progression from what it sounds like six years old when you first started realizing it to 11 or 12 to start getting some prescription medication, and then it just never changing from morphine to Vicodin to the next thing to the next thing to the next thing, all while still having to deal with the the sickle cell pain and the crises and the hospitalizations and all the rest of that. That's very that sounds very hard, man. And the unfortunate reality is that is some that's common for people that have chronic pain like that, because our body, you know, it's our bodies get used to inundating with such opiates, right? Because the Vicodin or the hydrocodone or the oxycotin and the things you're talking about, they're all classified under something called a synthetic opioid. And what that basically means, it's it's the traditional pain pill that you would get, or pain medication that you would get for, and we make it synthetically, so like in a laboratory or something, and your body eventually gets used to it.

SPEAKER_01 9:16

Yep, and you start responding in different ways, I'm sure, as as you get older, whether it's less or different reactions you may develop. So yeah, I I I could only imagine in in some case, some some scenarios, I guess I do understand, you know, how that must have affected you growing up. I got a question. Do you have syclosone? I have syndic, yes. Okay, cool. Yeah.

SPEAKER_02 9:43

Yeah. I work at Seattle Children's at the Odessa Brown Children's Center and or children's clinic, and I do uh what's called co-occurring therapy. So I do like mental health and substance use. And so we do a lot of chronic pain work, and you know, Odessa Brown has a uh very close connection with the sickle cell community and the Metropolitan Task Force for Sickle Cell. So um it's a it's a unique disease that we are unfortunately in the medical commute medical community don't have a lot of recourse to provide long-term care outside of opiates to deal with the sickle cell crisis. And so it's it's really hard for people to get long-term care. That's not just take another pill, take another pill, take another pill.

SPEAKER_00 10:32

Yeah.

SPEAKER_01 10:34

I've gone through that. How do you feel growing up on different types of medications impacted your life, your daily life or yearly?

SPEAKER_00 10:45

Well, the good thing is it really hasn't affected too much. My mom kind of like, as I was growing up, taught me to like she taught me how to wean off my medicine, so like when I get out of the hospital, I'm not just relying on it every day. And she would also like when I was in a crisis, she would help me realize when I need it and when I don't, basically. So it's not like I'm just whoofing down pills 24-7 basically, because I know it can get to that. There's definitely some days it feels like you're just taking buckloads of just medicine all the time and stuff. So like she really helped me with that part to like know when to space out my medicine or when to take Tylenol instead of taking the opioid all the time, just because we feel like it might work better. So it wasn't too difficult, and it wasn't like it was interrupt and everything, but there were times like she talked to my nurse at school to allow me to take my payments during school. Um, I would just have to go to the nurse to go get it. Yeah.

SPEAKER_02 12:29

Sounds like you got a really good mom that cared a lot about you and trying to find something to meet that middle and that need for you. Because I'll tell you from my experience working with a lot of clients with chronic pain, finding that support structure, family, girlfriend, boyfriend, whatever, right? To figure that out and navigate that, that's that's not as common as you would think.

SPEAKER_01 12:53

Yeah, that's huge. And you know, I personally don't know what I would do without my parents telling me, hey, you need to be on top of this, you need to do this, you know, making sure that one, I didn't feel excluded from everyone else, but also that I feel like I was strong enough to support myself. So yeah. Did you ever feel growing up, you know, different a little bit because you had to run out of class and maybe take those medications or at work and and stuff like that?

SPEAKER_00 13:26

All the time. All the time, yeah. And luckily, like my family was always a huge support group, but like you still need like people outside your family because it makes you feel a little different. I don't know why that is, but like I had friends who still treated me normal instead of like you know, people can get they see your disease before they see you sometimes. Right. So, like my friends, they've always and I would tell them like, hey, don't treat me any different, like just treat me normal, basically.

SPEAKER_02 14:25

Treat me like don't treat me like the kid with sickle cell.

SPEAKER_00 14:28

Yeah, basically. Even though like there was times when we would be hooping, and I gotta step to the side just to catch my breath because we're probably going a little too hard or like whatever, they wouldn't like rub it in my face because I had to do it. Like they would just treat me normal as much as possible. Even like I had a friend take me to go work out, and there was some stuff I would just be like, bro, I can't do it. Like, and he would push me to try and do it as much as possible that that my body allowed, but he would never make me feel bad if I couldn't.

SPEAKER_02 15:19

Yeah, right. He'd want to he'd want to push you to try to succeed, but he wouldn't shame you if you couldn't do it, or if you had to, if you had to kind of back off.

SPEAKER_03 15:28

Yeah. Yeah.

SPEAKER_02 15:30

That's a great friend. Yeah.

SPEAKER_03 15:32

Yeah.

SPEAKER_02 15:32

That's a huge friend. Because one of the things we talk about in recovery or even just in therapy, right? Is this idea that you can when you try, right? And you're pushing yourself to change, whatever that may be, and to improve, sometimes you fail. Sometimes you make a mistake, sometimes you stumble, or sometimes you try something and it doesn't work the way you thought. And that's okay, right? And I think especially when you're dealing with things that are outside of your control. You didn't ask for sickle cell. It wasn't like you were you had an option, you were born, you're like, yes, please, I will take the extra dose of this, right? Yeah, you just were given it, and then you're given this thing, and then you're stuck with it. And again, it's often kids will feel isolated or ashamed or weird or different because I can't play football, I can't play basketball, I can't go out and throw snowballs with my my friends, right? Or I like I use this analogy a lot, but like I when I walk around with a pill bottle in my pocket, I sound like I got change everywhere because I'm just jingling everywhere I go, right? Yeah, it's that like weird idiosyncrasies that come with it that can make you feel very different than everybody else. And then that isolation, oftentimes, man, it really twists the way you look at stuff. So finding people that care about you, that want to see you succeed and push towards that change. And inevitably, when things don't go perfect, still being okay and still wanting to hang out and you know, get to know you and and care about you, that's huge, man. And so it's really cool that you had that in your life.

SPEAKER_00 17:10

Yeah.

SPEAKER_01 17:11

Well, do you mind if I asked what that friend's name was?

SPEAKER_00 17:15

I actually got three. I call them my brothers because we and I've known them since middle school. So there's There you go. There's Will, Steven, and Andre.

SPEAKER_01 17:30

Okay, well, a special shout out to Will, Steven, and Andre. 100% and supporting people like us in the community. Yeah, you know, those are those are great friends. It's good to have them. All right, well, my next question for you was there a time in your life where you tried to manage your pain without the use of medication?

SPEAKER_00 17:51

Yeah.

SPEAKER_01 17:51

Yeah.

SPEAKER_00 17:53

And it was hard and it made everything feel a lot more difficult. Right. Um like, because sometimes there is a stigma just with pain meds in general. So you might be like, oh, let me try to go without it, and then that doesn't really end up working out just because of how bad the pain can actually get. And then it's like, what next? Like you don't you don't want to use it, but then there's times like my godmom had to make me realize she was like, if you gotta be on payments the rest of your life, so be it. And I was like, I was like, okay, like it's not as bad as I like think and feel. But like there's definitely been times I've tried to go without it just because of the stigma around it, or like just the negative aspects people have with that come with pain medicine, or just you know, right? I've tried, but I kind of realize like I'm not using it because I want to get high.

SPEAKER_02 19:30

Right. You're not just trying to take a fistful of oxycotton just to have a good time with your friends, right? Or yeah, to to get high, you're trying to just be able to function, get out of bed, walk to the bathroom, right? Hang out with your family in the living room, right?

SPEAKER_03 19:48

Yeah, yeah.

SPEAKER_02 19:49

They're like normal human things. I'm just trying to function. And especially, you know, one of the things I heard you say was the stigma piece of it. That's so true, right? I can tell you that is a huge thing, whether it's when you get a lot of times when I talk to clients that have sickle cell or other chronic pain, when they go to the hospital and they get that funny look from the nurse, or the doctor's like, when did you have this? And and what, how do you know your medication so well? And it's like, bro, I've been taking opiates since I was six. Like that's how we know how well it is. And we can skip all the formalities, right? Like, you know, those kinds of things, oftentimes it can it makes you feel like you're an addict, or it makes you feel like, well, remind me not to do that again. I'm not going back to that doc. I'm gonna figure it out on my own. Yeah, I'm gonna find something either from my buddy or from somebody I know or on the street, or maybe it's not even opiates, it's I'm gonna smoke a little weed or I'm gonna do this other thing. People will find, you know, pain is one of those things where it really is a motivating factor for us to do something. Very rarely do you get people who are like, I'm like at a seven out of ten pain, but I'm just gonna chill on the couch and do nothing. It's like, no, I want this pain to go.

SPEAKER_03 21:06

Right.

SPEAKER_02 21:06

So you find something, deal with it. And if you can't trust the medical people or the professionals in your life to treat you like a human and not treat you like an addict or treat you like less than, it's really hard to get that medicine that you need, so you find it on your own.

SPEAKER_01 21:21

Yeah. Yeah. And you know, I don't know how it is for you, but you know, growing up for me, sometimes, you know, there have been times where I've been tempted to take something else because I'm just like, hey, you know, I'm going to be on medication all my life anyway. Right. And it's really hard, I feel like, especially for people with sickle cell, to get over that stigmatism of saying, hey, it doesn't matter, it doesn't matter what I do. And they know it, and I know it. So kudos to you for you know being strong and making sure you know you're responsible. That medication and stuff, you know, because it's not easy.

SPEAKER_00 22:04

It's that it's not.

SPEAKER_01 22:08

Yeah.

SPEAKER_02 22:08

Especially because it's like you the thing you were mentioning before about like it doesn't work. Like, just because I got Vicodin doesn't mean that it's gonna work. Yeah, right. Over time, and the more you use it, it becomes less and less.

SPEAKER_01 22:20

Yeah, and it's harder to have faith in it.

SPEAKER_02 22:22

Oh, yeah. Like, oh sure, I'm gonna take this and everything's gonna be perfect just because you told me, Mr. Doctor, right?

SPEAKER_00 22:29

Yeah. I've had I've had like some doctors just not even understand, basically, like they've gone. I've gone to the ER multiple hundreds of times now, but like I've had some doctors walk in and they'll just look at me and be like, oh, you're not in that much pain. I'm not gonna treat your pain. And I was like, what are you talking about? Like, that's crazy. Just because I learned how to basically function or like mask my pain because I got family members who I don't like them seeing me in tears or seeing me like suffer like that. So I endure to the last minute basically. Um, I learned how to just mask my pain, but then that doesn't always help when you got a doctor who walks in expecting you to see like you bawling your eyes out. Like it gets that gets old and tiring all the time. Like I don't want to bawl my eyes out every time I go to the hospital. Just so a doctor will treat me. I've had doctors, I've had one doctor be like, oh, I'm not gonna treat you. I'm gonna give you one dose of pain medicine and send you home. And then they'll sit they sent me home. I remember this vividly. Like, he sent me home. I was headed out the door, and it was like my pain went from probably like a seven to like 15. And I dropped to the floor, and the nurses were like, We can't send him home like this. What are we doing? And that's when like a nurse I had before, she was like, I'm so sorry you had to go through this. Like, we're gonna readmit you and reseal you, and we're gonna have you see a different doctor. And I was like, Thank you, because I shouldn't be going home in the first place. Like, they literally almost had me out the door, basically.

SPEAKER_02 24:51

Yeah, right. And that first and foremost, I'm so sorry that happened. That's not okay. It is not something that's that ought to happen, period, for anybody, but especially someone who's been dealing with this for their entire life to be treated like you're just like you that your pain don't matter, and unless what do you want me to do? You want me to like act like I'm getting tortured? Like you tell me, doctor, what do I have to show you so that I can start feeling better? Right? And especially, you know, I I hate to say it this way, but especially as a black man, it's hard to be treated like that. And then it's like, great, so I'm just the addict, I'm the I'm just you because because of the way I look, you're gonna make me sit here in more and more pain. Awesome, thank you, appreciate that, love it, yeah, right?

SPEAKER_01 25:36

Young African-American people, man, women trying to get more medication or talk to people about you know their drug plans and stuff, you know. Sadly enough, it raises a lot of red flags for people, and it doesn't mean that you should stop trying to advocate for yourself, it just means that you know, sometimes people just aren't gonna listen to you.

SPEAKER_00 25:59

Yeah, I've kind of learned that the hard way.

SPEAKER_02 26:02

Right. And that's why. Luckily, go ahead, sorry.

SPEAKER_00 26:06

No, I was just gonna say, luckily, like there's some really caring people now in the healthcare system. I think COVID kind of like weeded out all the people who weren't supposed to be in the medical system anyway. Um, there's a lot more people who are willing to listen, they actually care because I've run into that problem less and less, and I I think it's also because the information on sickle cell has grown, and people know just how bad it actually is. Right.

SPEAKER_01 26:52

Yeah I'm glad that you feel like you know you can have you know some sort of communication with your doctors now, and you know, it means that we came a long way, which is you know something to be celebrated for sure. A hundred percent. Yeah. So yeah, I'm definitely happy about that. Do you do you feel this is you know, leading back to the main subject of this of this apoc podcast season? Do you feel like you have either a dependency with your medication or would you say that you have an addiction? Or maybe, you know, sometimes you struggle with a little bit of both. It's a hard question.

SPEAKER_00 27:41

There's times when I just don't need it. Um but that isn't like a fine line to walk. And it's definitely hard at times just to feel like or know when to take your medicine, I guess I should say. Like there's there's times you might just be sore from something. Your body might not recognize it as being sore, but you think it's your sickle pain. So it can be hard at times, but as you get older or just learn your body over time, you kind of know like what's what. Right.

SPEAKER_02 28:39

You start to learn a little bit of what different kinds of pain, where it is, and you know you're you know, you're an expert in your own body, man. And I think that that's a huge, that's a huge bonus. Because, you know, the thing that resonated for me, what I just heard you say, was sometimes it's hard to tell in the beginning, right? What's a sore pain, what's a sickle cell pain, what's just maybe I stub my toe on the coffee table pain kind of thing, right? Yeah. How to differentiate between those can sometimes be hard. But at the end of the day, you learn what you need, and that there are times when I'm dependent on it because this is the pain that I deal with and I need to function. Right. If I just could, if I didn't want to, if I wanted to be just strapped to the table and not leave my hospital room, great, right? But if I want to have a career, if I want to build music, if I want to do things in my life and have a functioning life as best I can, this helps me, right? And that addiction piece of it is hard to determine because it's it, but usually what I tell people is look at those around you, right? If you're if you got people that care about you in your circle and they're starting to say, Well, hey man, what do you what's up? Like, what's going on here? Like, is this is the are the pills talking to me right now, or is Devontae talking to me, or is Judah, like those kinds of things. And that's that's usually what I tell people because that line is so fine and fluctuates for people. There's no, I can't tell you, well, if you only have this number of milligrams on this frequency, or if you start taking Dilatin at home or whatever, right? There's no hard and fast rule for that. It is really dependent on each person's circumstances and situation. And when you're in the thick of it, especially when it's been going, it's really hard to see the force from the trees by yourself, right? It's really hard to make that determine that determination solo. So leaning into the people that you trust and love, and that trust and love you to kind of parse that out together, that's usually, in my experience, been a been a powerful tool to figure out where you are in that line.

SPEAKER_01 30:51

Yeah. Do you feel like you know, you're getting not only not only care from your medical providers, but resources and tools for you know using your medication, the pres the medications prescribed for you? Or do you feel like it's more transactional and they're just you know handing you medication?

SPEAKER_00 31:11

There's been times it's been like that. Um but now I actually like I gotta get a doctor now.

SPEAKER_04 31:20

Yeah, good.

SPEAKER_00 31:21

It it it took a while just to get it or find like that doctor who actually gives a fuck.

SPEAKER_02 31:31

Yeah, right, right.

SPEAKER_00 31:33

Excuse my language, but like it's it's hard sometimes. Like it took me till I was about like 24, 25 just to find that doctor who actually would listen to what I was saying and do something about it or like try something different. Yeah.

SPEAKER_02 32:01

Actually meet you, not just treat you like client number 5342. Here you go. Last week I gave you this, this week is what we're doing, like that kind of thing. Yeah, that's hard.

SPEAKER_01 32:14

One time I felt like someone's science project more than I did a patient, so there's definitely there's times that it feels like that.

SPEAKER_00 32:23

Um like I was probably 20, I think, and I had a doctor who he retired now, but he got to the point where it was just like he would come in. All right, how are you doing? What are you taking? Do you need a refill? All right, cool, and then walk out. And it was like it would be, it would be like I'd wait 30 minutes for a 10-minute like meeting with my doctor, and I was like, this is crazy.

SPEAKER_02 33:00

Yeah, it's like a drive-by, just like vroom, here's the medication, room, and the next patient. Yeah, that's horrible, man. Yeah, who wants that? That that is that is not, you know, and that's the unfortunate reality. That's bigger, that's that's an unfortunate reality, not just it's for a lot of people. But the sad thing is for people to deal with chronic pain, and especially people from marginalized or minority communities, you want that relationship. You want them to trust. You guys have a hist, you know, there's a history of people in those communities getting abused by the medical system. The last thing we want to do is exacerbate that further it by treating them like they're just here you go, here you go, here you go.

SPEAKER_01 33:41

Yeah.

SPEAKER_02 33:41

Right? Get to know them, get to talk to them, find out what they're interested in, what they like, what they don't like, how they're doing, how they're feeling, right?

SPEAKER_01 33:49

Yeah, you gotta remember that there are people too, and you know, like they have they have interests and stuff like that. And you know, I feel like it's a lot easier and a lot healthier to have that sort of relationship with your providers. If, you know, you need you need you expect this person to save your life or or to make it feel better. Right. So, you know, having a good, you know, relationship with your medical provider, I feel is really important.

SPEAKER_02 34:17

I don't need a relationship with the Wendy's drive-thru guy. Yeah, right. Like I need a relationship with my doctor, right? Because that's the person who I'm trusting to treat me appropriately and save my life.

SPEAKER_01 34:28

Right.

SPEAKER_02 34:28

I just want, I just I just want the curly fries, right? Like that, that's cool. The doctor, please. I need to know you and you need to know me.

SPEAKER_01 34:36

Right. Yeah. So yeah. Do you feel like you have a good relationship with your medical providers where you can, you know, get to know them or talk about the prescriptions and stuff like that?

SPEAKER_00 34:49

Oh, yeah, for sure. Yeah. It's taken a while to like find that doctor, but now like I feel like I could tell her almost anything, basically, and just be like, hey, this isn't working, or I tried this before. Can we like revisit that or whatever?

SPEAKER_01 35:14

Yeah. Has there been times where you feel the medication has negatively impacted your life? Like maybe it makes you feel more tired during the day, or you know, it's not really helping you. Well, I for I remember for me with oxycodum, I would get super bloated at random times, you know.

SPEAKER_00 35:35

Not too much just because of how like I learned to regulate my pain medicine, and I know my body's so good, like I know when like I take something that my body doesn't agree with. Like I was taking hydroxyrhea, or I got on it when I was 13, and when I got on it, I was like, I for one, I didn't feel like I needed it when I started taking it. But the doctor was so adamant about it. I was like, okay. So then I was 24, and I've never really taken the medication, like I guess, like I not like I should, but like consistently. Right. So when I was 24, I ended up getting my new doctor, and they put me on the medication, and I told them, I was like, hey, I don't feel like it works, but I for you, I will do it just because I had that relationship with the doctor. I was like, hey, I will try to take it consistently. I started taking it consistently for like six months. And over those six months, I had the worst reaction possible. So, like the hydroxy area was causing my skin to break out. Oh wow. And I've never really had skin issues, like I get itchy sometimes with pain medication, um, depending on what medication it is. But I've never had my skin like I prided myself on having like clear skin. Like that would just get me through for some reason. I don't know why. Um to something, yeah. Yeah, yeah, yeah. And the hydroxyure started causing a skin rash, but it wasn't just in one spot, it was everywhere. And I say everywhere, it was it was on my face, it was on like my lower extremities, it was everywhere. Yeah, and we had just planned on going for our 25th birthday to go to Vegas as a guy's trip.

SPEAKER_02 38:16

Oh, there you go.

SPEAKER_00 38:18

And I was telling the doctors, I was like, hey, something's wrong with my skin. Something is breaking my skin out. And I was telling him, like, I think it's this medication. He was like, Don't stop taking it yet. We'll I looked to it and you just started itching.

SPEAKER_02 38:36

I know. I was like, I feel like I've already put it. Like, ooh, I feel it.

SPEAKER_00 38:40

They were basically like, we'll like start winging you off different medicines to see what it is. And I was like, I've taken this, this, and this for years and never had this happen. I was like, I started taking this and my skin exploded, and it's never been in my system like that to happen. So everybody loves hydroxyuria just because of what it does for sickle cell, but for me, it never really did that. It never really worked. And finally, we winged me off everything, and I still had the skin rash. And I was like, I know you don't want me to stop taking it, but I'm going to stop taking it. Right. And it took probably like two weeks for my skin to start slowly clearing up. But it was just awful, like, yeah, that sounds awful.

SPEAKER_02 39:40

Yeah.

SPEAKER_00 39:40

Yeah.

SPEAKER_02 39:41

I doesn't sound it was torture, especially on a 20 25 run to Vegas. Yeah, that's the last thing I want. That's the last thing you need.

SPEAKER_03 39:49

Yeah.

SPEAKER_02 39:49

Yeah. Well, yeah, you had to go through that, but good for you for advocating, man. Speak up.

SPEAKER_00 39:58

That's probably been my biggest like issue. But I learned to kind of do it over time. Because I would just basically not advocate for myself, and then the doctors would just do whatever. But then it would always be a detriment to me. And then once I started actually advocating for myself or see like one of my family members do it, after a while, I was just like, I could do that. Like it's it's not that big an issue. Right.

SPEAKER_01 40:33

So yeah. Is there anything that you feel like you want to see change when it comes to prescribing medications? You know, whether it's going to the actual pharmacy or just having a conversation with your doctor?

SPEAKER_00 40:49

Something I want to see changed.

SPEAKER_01 40:51

Yeah.

SPEAKER_00 40:52

I've never really thought about it, but definitely like I need the whole system to not I don't even know how to say this. I need them to not have a stigma against people with sickle cell for one because we the only way to treat it, like the only way to really treat it is with pain medicine. So we kind of rely on that. And then when we're not able to get our pain medicine because the insurance doesn't want to approve it, or it needs another prior authorization, or like there's so many roadblocks that keep us from almost not getting pain medication that I need those to kind of change. Um I don't even know. Like the whole system is kind of weird to me. The pain medicine, like, if if you know this disease requires high amounts of pain medicine, I don't know why it it's so I guess frowned upon. Yeah.

SPEAKER_02 42:19

Why is it such a pain in the butt to even get it? And then when I do get it, I get shamed and blamed, and I get treated like I'm some horrible person, right? And all just so that I can function. I gotta go hoops, I gotta feel like a piece of crap, I gotta get treated poorly, from the doctor to the pharmacist, to the nurse who's checking me in, to the community who was like, oh, you want pain, go talk to him, right? Kind of thing. Right. There's a lot of people that there were, there's a lot of ways that the system and and society has set it up to really make you make people who have this disease get the care they need in a in a non-judgmental, supportive way.

SPEAKER_03 43:01

Right.

SPEAKER_02 43:02

And that's what I when I hear you say I want the system to change, the stigma and stuff, that's what I hear. I hear you saying, I just want to be, I just want the things I need to be a real human without feeling like a piece of crap or having to spend like three quarters of my day just to get two pills, right?

SPEAKER_01 43:18

Right. Yeah. And you know, you I feel like people don't remember this or or for some reason are educated on it. And we pe people with sickle cell, we've been doing this for pretty much all our lives, you know. We've been trained to have this medication. Yes, we need higher doses. We've been taking it for our whole lives, you know. A little bit of medication is not going to cut it. It's just not. And so maybe it doesn't look right to in your eyes, but you know, this is this has been my our lives for pretty much as long as we can remember, and we don't want it to be this way. Way we didn't like you said before, we didn't specifically choose sickle cell, you know, but this is what we were given, and I feel like it's hard for people to see us, other than just like we were saying before, patient number three or four, you know, just let's give you the bottle and move on. So yeah, and you know, that's why we're trying to do this season, is really just trying to make it known that you know this is what we go through and this is why we are the way that we are, and we we want we want you guys to know us, you know, so that you can make better educated decisions on giving out medication. So how we get treated, and how we get treated, yeah. 100%.

SPEAKER_00 44:45

What's crazy to me too is that there's other either diseases or things that require those high doses of pain medicine, but it doesn't really get frowned upon like that, like lupus, like lupus requires a ton of pain medicine just so they can function. But then when we need that same either amount or maybe more, it's like they're hesitant about it. Like that's kind of crazy to me.

SPEAKER_02 45:20

All of a sudden it's a problem, right?

SPEAKER_00 45:23

Yeah, yeah.

SPEAKER_02 45:25

Yeah, and there's there that that is an unfortunate reality, and I think that's one of the things that I'm excited about this project, and in general, with with where we see, you know, one of the things we said earlier is that it's getting better, right? Where we see that. I'm call me an optimist, man, but I like to look for the improvement, right? And so I'll take improvement, even if even if we're not at the end of the rainbow yet, we still got a long ways to get there and you know, minds to change, but improvement's improvement.

SPEAKER_01 45:57

Yeah. Yeah. And second to last question here. Do you feel like you know, you have access to resources and stuff if there was a chance that you feel like you were leaning on the substance abuse side, or do you feel like I am I'm I'm good.

SPEAKER_00 46:13

My mom's a social worker, so there you go.

SPEAKER_02 46:17

Yeah, you got it, you got it across. No wonder she was so good at what she does. She's not she's been doing this since jump street.

SPEAKER_00 46:23

She said, Yeah. I've been doing like what's crazy, like, I did something similar to this when I was little. I was probably like seven, eight years old. And so, like, I've been preparing for stuff like this my entire life. Like, if I need resources, my mom's always kind of been the one to either find out about it and tell me to go research it myself or like hand it to me.

SPEAKER_02 47:01

There you go.

SPEAKER_00 47:02

Right. Yeah, so like there's stuff like I know about to handle myself if it's ever needed. So it's kind of cool, but not cool at the same time, just because you know. You need it.

SPEAKER_02 47:25

Yeah, yeah.

SPEAKER_00 47:26

Yes, yeah, 100%.

SPEAKER_02 47:28

Well, I'm really happy to hear that because you know, one of the things we see oftentimes from as a provider are people who are in that spot and don't know, don't have people, or the people they have in, they're concerned about bringing it up because they're like, Oh, is this person gonna judge me? Are they gonna is the answer just because I'm asking? Is that mean all of a sudden the answer is yes just because, right? So they kind of like hesitate, and so then they kick it, kick that can down the line, look at it later. That's a future problem kind of thing. And then, you know, you don't get the answer, and then it's up to a coin flip, right? Or roll under the dice to see how things turn out. So I'm happy to hear that you got you feel comfortable on that, man. That's huge.

SPEAKER_01 48:12

Yeah, and you know, kudos to you and really anyone who's in a who has a chronic illness for you know finding that support. And you know, I feel like we as people with chronic illnesses, it's really important for us to feel more first of all, feel connected and be connected. So yeah. All right, well, I got last question for the night here. Um, what is one key takeaway or a piece of knowledge or information you want to pass down to the general public here who are listening before you head off?

SPEAKER_00 48:46

Um try to see the person behind the disease. Because usually they're more like you than you think. Or you might like just enjoy that person a different level than just seeing what they're dealing with or going through. Um I think that's probably it, 'cause I've had definitely I've had times when people don't even give you a chance, basically. They just see what it is you have instead of actually giving it a chance. Or like example, I'm like I've been told, Oh, I can't date you because you have sick for sale. Like, it's just like they don't see you as the person, they just see what you have, basically. Right, yeah.

SPEAKER_02 49:58

There's more to me than just this thing, right? Like, again, I'm a person, I'm a human with thoughts and feelings and and all the things, right? Yeah, more than just the sickle cell disease.

SPEAKER_03 50:08

Right.

SPEAKER_02 50:09

And you know, that goes back to what you were saying before about just a lot of times in our culture we just don't know. There's a lot of people who don't know about it or have a preconceived notion about it, and then it's really hard for them to change that, and then y'all get the brunt end of the stick on that. Yeah, so that you know, I'm sorry to hear that, man.

SPEAKER_01 50:28

Yeah, that really sucks. And I I definitely get it, you know, it's for some reason really hard for people to see past, and and this is true to pretty much anything in life, to see past the worst, you know, because there's only negative sides to consider, but you're a whole other human being, you know.

SPEAKER_02 50:48

So I got I got thoughts, I got things, I got opinions, I'm more than this. I I promise.

SPEAKER_01 50:54

Yeah, and I promise you that you probably have other problems that may they may not be as severe, but you still have other problems right as an as a human being. That's what human beings do. We deal with the problems and we try to get through it together, you know. So yeah, so yeah, just circle back around, you know, just making sure that you know the person, I think, is huge. So yeah, I appreciate that for sure.

SPEAKER_03 51:19

Agreed.

SPEAKER_01 51:20

All right, everyone. Well, thank you again for tuning in to another episode of our podcast in our blood. A special thanks to you, Devante, for coming on for us. And again for you, Alex. Yeah, this is our first time in person. Hopefully, we got a few more in us. So 100%. Yep, 100%.

SPEAKER_00 51:37

Yeah, all right. Well, I like this.

SPEAKER_01 51:40

Yeah, yeah, it's good. All right, guys, we'll catch you in the next episode. Peace. Thank you for tuning in to another episode of our podcast, In Our Blood. If you want to learn more about Sickle Soul, 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.