Phillis Unique Journey with Medication

In this episode, we get the unique perspective of Phillis, who works in a pharmacy. Listen in as she shares her experience with medication and what she has seen from others, given her occupation. 

To learn more visit www.mssctf.org. 

Transcript

SPEAKER_02 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. Thank you everyone for tuning in to another episode of our podcast In Our Blood. And today with us we have a new guest, Phyllis. Phyllis, do you mind giving us your name, age, and occupation?

SPEAKER_01 0:45

I'm Phyllis Achumpong. I am 23 years old and I'm currently a student, but also working in the ER as patient registration. And I also work at a Pilates studio.

SPEAKER_02 0:58

Oh wow, that's that's really cool. I'm actually looking at jobs to work in children's right now. How is it working in the ER?

SPEAKER_01 1:05

It's it can be a lot, but it's it's very different. You get to see a lot of experiences. I'm hoping to get into the medical field in some aspects. So it's a really great way to get your foot in the door and just kind of make yourself comfortable with the environment.

SPEAKER_02 1:22

Yeah, I'm sure. Well, just a small talk question to start off with. Do you have a favorite song or a song of the day that has just been playing in your head and you're just like, I just want to share with the people today?

SPEAKER_01 1:34

I have been listening to Daniel Caesar's new album. He has a song called Rain Down. It's really good.

SPEAKER_02 1:42

I don't think I remember how Rain Down goes, but I am also listening to that album right now.

SPEAKER_01 1:46

It's really good.

SPEAKER_02 1:47

Yeah, it is pretty good. Yeah, no, I feel like there hasn't really been too much to look forward to music-wise right now, for at least me personally.

SPEAKER_01 1:58

That's true. I feel like I've been trying to look give a listen to everything. And when I mean say everything, I mean everything like RB, hip hop, a little indie, sometimes Mexican music, like anything that sounds good, to be honest.

SPEAKER_02 2:14

Yeah, I feel the same way. I don't think I've ever listened to indie music though.

SPEAKER_01 2:18

There's some really great artists out here. I can put you on to some later.

SPEAKER_02 2:21

Okay, yeah, that'll be cool. All right. Well, we're gonna hop into the questions just so that we, you know, get a sense of who you are. Can you share your story living with sickle cell and uh you know maybe like how it shaped your early expectations and and oh, what am I saying, perspective?

unknown 2:39

Yeah.

SPEAKER_02 2:41

Nobody clip that, nobody yeah.

SPEAKER_01 2:43

So of course, I was born with sickle cell. My parents found out that I had it early on. Um, as we all know, sickle cell comes with its many, many complications. So I've had much my fair share of trials and tribulations with those kind of symptoms that come with sickle cell, things like acute chest and getting pneumonia or getting really sick easily. As a kid, I used to get fevers all the time. So that was kind of my thing, you know, constantly in and out of the hospital. And then for me, I actually had a stroke when I was really young. Sickle cell. Yeah. And so it's it's funny because everybody's sickle cell is different, or at least I like to think so. Um, a lot of people, most people tend to experience, you know, sickle cell crises, and that is usually their main concern in terms of their health. But for me, it was different. It was, you know, making sure I had enough oxygen and blood flow in my brain. Um, and so to prevent any other strokes or anything from happening, I started monthly blood transfusions at the age of about say five or six years old. So I went under, got my portaf, and I was doing that for let's see, a good 15 years going every single month to Seattle children's and getting my monthly transfusion. But fortunately, something that comes with the monthly transfusions is the influx of iron. So you get iron overload in your body. So that's kind of the biggest health concern that I've been dealing with since I was young to now my younger adult years. So that's kind of how sickle cells shaped my life. Just yeah, like I said, being used to being in and out of the hospital quite often, having to take it easy, you know, kind of having a plan for times like this where it's really cold outside and your body has certain reactions that sometimes you're not prepared for.

SPEAKER_02 4:49

So yeah, I know for me, and especially during these times, it's really easy to get sick and stuff. For sure. I feel like I know like two or three people who are just struggling, struggling right now, just in and out of the hospital because they're getting sick. So yeah. You said that you know, you had a stroke. I I couldn't I couldn't imagine going through that, especially from a young age. You know, I'm sure you faced lots of challenges because of that, but you know, it seems like you're doing pretty well for yourself right now. So I think that's a really good, that's something to be celebrated.

SPEAKER_00 5:21

Yeah, for sure.

SPEAKER_02 5:22

Yeah. Were there any medications that you feel like impacted your life during childhood or as a teenager?

SPEAKER_01 5:31

Yes. So piggybacking off of what I was talking about with the iron overload, one medication that I was put on to kind of offset the amount of iron my body was getting um was called, what's it called? Sorry, they always have like super confusing names. They always do. It was called X-Jade, but at the time, the kind of it was like a pill form or a powder form, I believe. I ended up having a really bad allergic reaction to it, which is just my luck. Because it's like I really need it. So the only other option was to do chelation. And so with chelation, it's actually a shot that you have to do. So wow, I was, yeah, from the ages of like seven, eight getting a shot every night in my thigh and having to have yeah, every single night, and having to have a pump run with the IV medicine uh to get the iron lowered. And so that was something that was like me and that medicine went hand in hand, you know. I couldn't I had to plan my life around it. I couldn't go to sleepovers and not take my pump with me, or you know, like sleep away camp and not take my pump with me, or things like that. So I feel like that's been the most, what do I say, like it's been the most relevant like medication that's been in my life for a long time?

SPEAKER_02 6:55

Yeah. I couldn't imagine, you know, having to think about bringing that places and then you know, nobody wants to get a shot every day. And you just yeah, I'm sure you were just sitting waiting, thinking about, oh man, I'm gonna they're gonna have to poke me again tonight. Yeah, no, that's that's a lot. How how did that do you feel like that helped like you physically or or and you know, like how did that affect you mentally?

SPEAKER_01 7:21

Yeah, with medications, you know, there's always a plus and there's always a minus with it. So while it was helping with the iron overload physically, you know, there's always the mental toll that taking medication, especially something that you take daily, it takes over your mind, especially with something like a shot. If you have, if you get a lot of shots in the same area, it starts to cause like bruising and things like that. So of course, as a young child, you know, it kind of messes with your self-image. So like body dysmorphia was pretty common for me. I hated the way that it made my thighs look, you know. Doctors would always try to say, Well, you know, you can do it in different places, like you know, your stomach, but wants to get a shot with their stuff. Yeah, that does not sound like appealing at all. So I was like, is this really like the only other option that I have? So that used to be a big struggle in my household. Like sometimes my parents would have to both hold me down and I would cry, and just yeah, it was a big struggle.

SPEAKER_02 8:28

Wow, yeah, no, I could not imagine. And you know, to tie to the body dysmorphia thing, I feel like that is very common for people in general who have just been told that there's something about their body that is wrong, regardless of whether or not, you know, there are physical altercations to you, you know, mentally. Yeah, people have been telling you all your life there's there's something deficient about you, there's something not right.

SPEAKER_00 8:54

Right.

SPEAKER_02 8:54

That can be that can definitely be a huge toll on the mind for sure.

SPEAKER_01 8:58

Yeah, yeah, it can be detrimental, especially when the only thing that's helping you is also like ruining your body in a way.

SPEAKER_02 9:06

Yeah. And I think this goes without saying, but did you feel you know different from your peers, you know, regarding the use of medication?

SPEAKER_01 9:15

Of course, yeah. Because not many kids have to take, you know, medications daily, especially several different types of medications. So I knew from a young age that I was different from other peers.

SPEAKER_02 9:29

Yeah, yeah. I remember having to like walk into school and stuff, and like people would hear my backpack shaking because I had different types of medication in there, and they're like, Well, what does he got? What is he eating at lunch?

SPEAKER_01 9:43

Yeah, or having like a whole plan with the nurse's office, yeah, constantly being in there too.

SPEAKER_02 9:51

Yeah, yeah, no, and you know, especially when you're younger, you know, that raises a lot of questions for younger kids. So yeah, I know. I couldn't imagine having to do a shot instead, they would be scared of me.

SPEAKER_01 10:04

Yeah, it was a lot, yeah.

SPEAKER_02 10:06

I'm sure. Yeah. At any point, did you try to seek to manage your condition without the use of medication?

SPEAKER_01 10:14

Yeah, that's actually a really good question. So a time came when, you know, I was getting older. It was kind of time for me to take over the management of my chelation therapy. So it's like, you know, my parents couldn't always be the one to give me the shots, especially because you know, sometimes they would work overnight. So I was about I think 12 or 13 when I began kind of managing that myself. And that's a big responsibility. It is a big responsibility, and I feel like there's definitely benefits, there's pros and cons to you know, having those kind of responsibilities at such a young age because I wasn't really handling it the best way. So, for example, I hope none of my old doctors are listening to this, but sometimes my parents would, you know, go to work and they'd be like, okay, make sure, you know, you take your shot tonight. I'd be like, Yeah, yeah, sure, I'm gonna do it. And then I'd just go to bed without doing it. And I would keep doing that for a while. And I'd be thinking to myself, like, I don't feel sick or anything. But then I would go in for my transfusion and they're like, hmm, your levels are they're looking a little high. And so they were kind of trying to figure out what was going on, but I knew deep down inside that I wasn't really managing my medication in the best way possible, and it wasn't because I didn't think I needed it, but more so that mental struggle with now being the one to hold the needle and have to do it myself. Like, I don't think anybody could give themselves an at 12, at 13 level, yeah.

SPEAKER_02 11:51

Yeah, that's a huge responsibility. That's a huge responsibility, and I couldn't imagine the mental fortitude.

SPEAKER_01 11:58

You're sitting there with the needle and you're like, No, yeah, sometimes it would take me an hour, two hours just to do it. And my sister would even try and come and like hype me up and try to count me down and everything, and it would just be such a struggle.

SPEAKER_02 12:15

Yeah, I yeah, I I I couldn't imagine that now, yeah. Just a clarification question Is it was it an iron deficiency or is it too much iron?

SPEAKER_01 12:26

Too much iron.

SPEAKER_02 12:27

Oh, okay. What do you what do you do naturally for that? Like what are the tips that you can get?

SPEAKER_01 12:33

Unfortunately, there's not much you can do naturally. Of course, there's like maybe some diet changes you can make to not consume things that naturally have iron, yeah. But in terms of like expressing iron from your body, there's not much you can do naturally. So medication is one of the only answers, unfortunately. Yeah.

SPEAKER_02 12:55

Yeah. Have you ever used or you know, been tempted to use your medications for a reason outside of sickle cell?

SPEAKER_01 13:04

No, I feel like with this medication, it's it's different because there aren't really any other benefits than just the iron chelation.

SPEAKER_02 13:13

Um there's a needle involved, you know.

SPEAKER_01 13:16

Exactly. So I just didn't want to do it in the first place, much less to do it for other reasons, you know.

SPEAKER_02 13:23

Yeah, I yeah, I can imagine. Well, have you ever felt that the medication you prescribed led to a dependency or was an addiction, which is the main point of what this season is all about? Was it a dependency or an addiction?

SPEAKER_01 13:39

I feel like it's definitely become a dependency, you know, because in a way my life does depend on it.

SPEAKER_00 13:48

Yeah.

SPEAKER_01 13:48

Um and so that's actually been something that I've had to work on as a young adult. Are my anxieties relating regarding my medication and my health and things like that, and like not thinking it's gonna be the end of the world if I miss a dosage, or you know, sometimes as a young adult, it can be hard to follow up on appointments and everything when you're handling it by yourself. So just to make sure you're like I'm mentally okay if I'm not what I consider on schedule, if that makes sense, right?

SPEAKER_02 14:26

Yeah, I think that I think that makes sense. And you know, in your case, it definitely seems like it would have been more of a a dependency because your body literally needs it.

SPEAKER_00 14:36

Yeah.

SPEAKER_02 14:37

But has there ever been a time where like you were taking pain medication or or stuff like that, and you feel like it it led you you were trying to figure out the line between dependency and addiction, or was it more of just the shots that you were getting?

SPEAKER_01 14:54

I think with me it's a bit complicated because I would say my sickle cell experience is very different from I'd say a lot of people that I know and even friends that I've grown up with. Like I said, I didn't suffer from crises as much, probably because I was getting blood transfusion so often. Um, so I didn't have as many like like sickled cells. So I wasn't having that much struggle in terms of pain, but I do remember times when I would be in pain as a child. And obviously, when they offer you medication as a kid, you don't really understand anything about dependency or things like or addiction. You just don't want to feel pain. Right. Does that make sense? So I remember this one time after I think it was like a surgery that I received, and they gave me a pain pump, which now looking back is kind of insane to give a child. But they were like, whenever you're in pain, just press this pump, you know? And so I remember having that and just like I don't know, kind of like playing around with it, not taking it too seriously because like I was a child, and so just knowing like, oh, I don't want to feel pain, so I'm just gonna press this pump and just press this pump. But I feel like it's not until you become more educated as you're older that you realize there you have to be very intentional when it comes to taking those medications because the line between addiction and like dependency and like what your body needs is so thin.

SPEAKER_02 16:34

Yeah, yeah, for sure. And to the back to the point of the pain pump, I I I me personally, whenever I see the pain pump, it just raises so many questions in my head. Yeah, what are the like is there a certain amount that it releases on the hour, and you can't see that, you know? What what are the precautions behind the pain pump? And I'm sure we're gonna discover that more as in in the season as we talk about it.

SPEAKER_01 17:00

Yes, but that definitely is something good to know.

SPEAKER_02 17:04

Yeah, well I'll take note of that and see if we can answer that question at some point. But yeah, no, it's it's a strange thing to give a child, yeah. Um, and you know, I feel like that is, I feel like I would say like a pacifier, and you know, like it starts you off young and you get to like you know keep hitting that pump, and eventually when you're when you're older and you start missing the pump, you know. Yeah, so yeah. Well, back to you, are there any specific changes that you would like to see in the practice of prescribing medicine to folks with sickle?

SPEAKER_01 17:41

Oh gosh, where do I start? I the main reason why I wanted to be guests today was because I feel like my experience with working in the ER has definitely shaped my perspective. Somebody with sickle cell, because I've seen firsthand what it looks like as a patient and also what it looks like behind the doctor's desk and you know what they're saying about patients, things like that. And I definitely think our healthcare system is very broken when it comes to not just treating people with sickle cell, but treating people with people of color in general. As we all know, people of color, especially black people, are usually labeled as drug-seeking, you know, difficult to work with. They usually don't take our pain seriously. And that's something I've seen firsthand, unfortunately. Working in the ER, you know, seeing patients who have sickle cell laying there in pain and screaming out and crying, and then, you know, and turning around and hearing nurses at the nursing stations some of the things that they say about the patients, and it's just it's it's not okay.

SPEAKER_00 18:55

Yeah.

SPEAKER_01 18:56

I know that maybe there are people that have had their struggles with addiction and dependency, but I don't think that that should that should restrict us from giving people with pain the care that they need. I feel like there needs to be less uh more individualization and less seeing people like uh, you know, just like a group thing.

SPEAKER_02 19:24

I feel like you want you want to see people coming together to talk about this. Something discussion about, you know.

SPEAKER_01 19:32

Exactly. And I feel like providers I need help, you know. Yes. I feel like I would like to see providers take it case by case instead of just summarizing, oh, this person has sickle cell, they're probably drug seeking, you know. Let's actually look into their chart, let's actually see what their history is. Let's see if, you know, maybe the weather is affecting them. Are is this person housed? Like, is that playing a role? Like, what's this person's environment like? Stress levels. I feel like not enough is being done to address these things. And instead, it's just a lot of assumption and bias being thrown at us sometimes, which is really unfortunate to see.

SPEAKER_02 20:14

Yeah, I bet. And what are what are some of the things? Maybe you don't remember, but what are some of the general things that you've heard?

SPEAKER_01 20:20

Okay, so this, oh gosh, this is like kind of brings up a lot of past emotion for me because, like I said, I do patient registration. So I'm often sitting at the nurse's station. You're right there. Yes. And of course, not everybody that I work with knows that I have sickle cells well, but sometimes, you know, conversations are had. And one time I recall a nurse coming back from a patient's room. This patient had sickle cell and was, of course, requesting, I think it was a certain medication. And usually a lot of patients have a pain plan in place that they've already discussed with their providers. So they'll usually know I need, you know, this amount of this, this amount of this, or whatever. Right. And I feel like sometimes when that's presented to nurses or providers, they're sometimes like, hmm, like that's a little questionable. Like you want this and this kind of right. You've already got your list of everything that you want, like you're trying to like order a drink or something, you know.

SPEAKER_00 21:21

Right.

SPEAKER_01 21:22

But they don't really understand that, like, that's really nice. Like, we know what's best for our bodies. And so this nurse had come back into the station and saying, like, oh, I'm tired of these patients with sickle cell. They're always coming in here, and the first thing they're asking for is like delauded or something so strong. And wow, you know, he was kind of going conversing with two other nurses, and they were just like, Yeah, in the old cities that they used to work with, there's a lot of patients with sickle cell. I'm assuming a primarily black city, right? They're they're so difficult to work with and they're always giving us trouble. And I just sat there in shock. And I could I didn't even know what to say because it's like Yeah, you're right there. You have something like that could be me that they're talking about, you know. And I I already knew that there's a lot of disparities within healthcare, but I just never knew that I would be face to face with it one day.

SPEAKER_02 22:16

Yeah, yeah. That's I'm sure that was hard to see and hear. Yeah. It really was. And you know, you think that the people behind the table would have a little bit more understanding, especially because people with sickle cell, like we've been talked about, like we talked about in previous episodes, you know, we start off very young with this medication, and we're asking for a higher dose simply because you guys have been giving us dosages since we were like five years old.

SPEAKER_00 22:49

Yeah.

SPEAKER_02 22:50

And we grow up and we're just adding on more, new kinds of medication, higher dosages.

SPEAKER_00 22:56

Yep.

SPEAKER_02 22:57

So to hear that people are saying, you know, they're asking us for too much, or these people with sickle cell.

SPEAKER_01 23:04

Yeah.

unknown 23:04

Yeah.

SPEAKER_01 23:05

Which is very loaded language and very layered. I don't even want to get into that.

SPEAKER_02 23:10

Yeah, well, that's that's that's what we're here to do.

unknown 23:14

Yeah.

SPEAKER_02 23:14

But no, it's it's really sad. And you know, it it's a jolt for me to hear it, but surprisingly, like it's not even shocking.

SPEAKER_01 23:24

Yeah.

SPEAKER_02 23:25

Because I I've known people who've dealt with that for a long time, and you know, even myself, you know, so it's it's just sad, sad to hear.

SPEAKER_01 23:35

Yeah, just it kind of connected me to times when I was a kid and I felt like my pain wasn't being taken seriously by providers, you know, like getting asked silly questions like, oh, do you think this pain could be because you're sad, or you know, because you're going through something? It's like, no, I'm pretty sure I know what my body feels like, you know.

SPEAKER_02 23:56

And do you feel like you can have a meaningful conversation like with your medical providers and about like your prescriptions and stuff? Or do you feel like it's a pretty closed deal?

SPEAKER_01 24:08

You know, I feel like I feel like me personally, I'm really grateful for my providers because they are willing to listen to me because like I said, I'm I know my body best and I like to think that I have full autonomy over my body, you know. But it's unfortunately not the same case for everybody, you know. Some people have providers that are very ignorant towards certain situations or towards certain circumstances, especially because sickle cells not it's not a disease you can see, you know.

SPEAKER_00 24:43

Right.

SPEAKER_01 24:44

So it's hard to know like what does somebody who's really in pain look like? What does somebody who's suffering look like? So it all depends on if your providers are just willing to listen to you.

SPEAKER_02 24:55

Yeah. And you know, I I personally feel like, you know, for people who say that it's a disease that you that you can't see, or for people who think it's like something that is like just not there, you know, you're not seeing it, but you know, that person is feeling it. And that person has it all over their face.

SPEAKER_00 25:14

Yeah.

SPEAKER_02 25:15

Person has had memories and you know, emotions tied to this disease that you don't even know what you're talking about. And it's, you know, it's like herded families, yeah, friends, you know, even themselves. So, like for people to say that it's like, you know, oh, we he clearly is fine, you know, it's yeah, how can you really sit there and judge that? But how do well I'll I'll I'll mix up the question for you a bit. Do you feel like you can talk to the providers that you work with and be like, hey, these people have sickle cell, I have sickle cell, you know. Maybe we should start coming up with a better way of telling right and wrong here, or do you feel like between them is just like something you can't even intervene in?

SPEAKER_01 26:01

You know, oh gosh, where do I even start with this? I feel like it depends. I actually did try to have a conversation with the nurse who I heard saying that because I'd sent a very upset email to my work management, and they were basically like, you know, we're sorry that this has happened, but there's nothing we can do, you know, which was very surprising to me because I feel like the least you can do as a medical professional is just have good by bedside manner, you know, like don't talk badly about your patients, things like that. But at the same time, it's like it's not our job as people or patients with sickle cell to educate the providers. There's a reason why you go to school, you know, there's a reason why they have to take all these years of residency and things like that, because you need to be prepared for every situation.

SPEAKER_02 26:57

And I feel like something that's not talked about enough within the medical world is ethics and you know, like the moral code and just and and also I don't really even think it would be that hard to just go up to your staff members and be like, hey, you know, like we're here to serve them. Like, yeah, we can have our own opinions and stuff, but you know, we shouldn't be shaming people for exactly the uses of their medication. Like, I'm sure they a lot of them don't even want to be here, yeah.

SPEAKER_01 27:28

So yeah, yeah, but you know, a lot of a lot of these companies and corporations are unfortunately kind of corrupt when it comes to that part. You know, they don't really they they do care about their patients. There are providers who care about their patients, so I don't want to make it seem like I don't think that. But the companies as a whole, when it comes to, you know, having that kind of education, I don't think it's taken seriously enough.

SPEAKER_02 27:53

Yeah. Do you feel like you have an experience or an experience that you haven't shared that like greatly influenced your view of medication and management?

SPEAKER_01 28:03

You know, it's I wouldn't say there's just one experience. I think it's just as I've gotten older and become less ignorant to the world around me and how things work. I think I've just had this view of okay, you just have to be careful because dependency, I feel like it starts small, but then it kind of just like hits you like a truck, and now you're in it, you know?

SPEAKER_00 28:30

Right.

SPEAKER_01 28:31

So I've just always had that thought in the back of my head, just like be careful. Um, I feel like, especially as people of color, unfortunately, I feel like we are made to feel like we shouldn't feel pain, right? Or we should be like so strong, or like we feel better about ourselves the like the more we don't feel like we need medication or we can hold out without it. And I feel like you just have to do what's best for your body and listen to your body. Obviously, do things under supervision of your provider, don't don't be taking medication like when it's not needed. Yeah, but other than that, it's just like listen to your body, do what your body tells you to do, you know.

SPEAKER_02 29:15

Right. And you know, this is why we're ex we're exploring this topic because a lot of people, you know, after a while, like you said, it's hard for them to decide whether or not that it is their decision or not.

SPEAKER_00 29:29

Yeah.

SPEAKER_02 29:30

That I need it versus I want it. Right. So yeah. Do you think that there is enough support for individuals dealing with addiction related to prescribed medications?

SPEAKER_01 29:40

There are resources. I that's one thing I will say. Are there enough? I don't know if it'll ever be enough. But I do like to see that there are resources for people to get. The one thing that does make me a little bit sad is the amount of barriers that there are towards people getting help. Like, for example, lack of transportation, lack of funds, like things like this can be real barriers for people who are dealing with addiction. Um, and they might want to get clean or try their best to get clean, but you know, sometimes it feels like a stepping stone. You just make two steps forward, then you're one step back because you know, life pushes you back.

SPEAKER_00 30:28

Right.

SPEAKER_01 30:29

So yeah, I just I feel like because of the amount of barriers there are, we just should have less ignorance towards people's situations with addiction because it's like you never know how somebody got addicted, you know. So I feel like the assumptions that are made um towards people with addictions, it it needs to stop and more education needs to be given or had.

SPEAKER_02 30:55

Right. And even on to like, like even for the people who aren't addicted, I feel like. Because like like you were saying before, you had to take these shots, and I'm assuming that this isn't getting you high, you know. Right. It's not something that you would say that you are addicted to, but it still have caused you a lot of grief, yeah, for yourself and I'm sure your family.

SPEAKER_01 31:16

So, you know, that could have been an easy pathway into addiction, you know. So it's like you never know somebody's story, right?

SPEAKER_02 31:27

And on top of that, you know, for them to be like, oh, well, you can just get it in your stomach instead, you know. Like, I don't feel like that's the support I wanted to hear. I don't think that's that would have been a good takeaway for me.

SPEAKER_01 31:40

That's easy for you to say. Why don't you try it in your Yeah?

SPEAKER_02 31:45

And I know for a fact a lot or most of these, most of these people who are prescribing it and taking giving the medication, they've never had to have a shot in their stomach. Yeah.

SPEAKER_01 31:56

Yeah. It's it's really easy to say, like, oh, it's not such a big deal when you've never experienced it yourself.

SPEAKER_02 32:02

Yeah. Yeah. And you know, they may practice giving shots on each other or blood draws and stuff, but nobody's nobody's forcing them to get a shot in their stomach. You know, that's a sentence.

SPEAKER_00 32:12

Yeah.

SPEAKER_02 32:14

Yeah. So this brings us to our last question of the day. What is one key takeaway that you want listeners to remember about your story of, you know, regarding medication? I feel like you've given a pretty good, pretty good advice so far.

SPEAKER_01 32:31

Thank you.

SPEAKER_02 32:31

Yeah.

SPEAKER_01 32:32

I feel like this is an important one for me because it's like this is what people are gonna take away from this. I would say, okay, to my sickle cell warriors, I would like for them to know if you have been, you know, taking medication since you were a child, which I know is the case for most of us, it can become very discouraging. And, you know, I know I'm not the only person that's ever experienced like, what's the point of taking all these medications? You know, maybe I should just let my body do what it will do what it do, you know.

SPEAKER_00 33:08

Right.

SPEAKER_01 33:08

I'd say just don't be discouraged, even though sometimes it might not look like you're getting sick immediately. These medications are helping you keep your body stable, keep it alive, you know, keep it functioning well. And it's like we already have so many things that we're trying to upkeep. So it's like just try to stay encouraged. If you have to set alarms, set alarms, pillboxes, right? Listen to your body, take control of your story too. Um, I know a lot of people that, you know, they go for their checkups with their doctors, and it's kind of just like, okay, on to the next. But it's if you ever feel like you're not being heard or listened to, there's a lot you can do about it. You know, talk to somebody higher up. Don't just sit there and feel like you have to be subjected to whatever treatment you're going through. Speak up for yourself because our story matters, and it's really important that people of color, especially people with sickle self, feel comfortable in speaking up for themselves and are treated with the care that they deserve.

SPEAKER_00 34:18

So that's what I would say. Yeah.

SPEAKER_02 34:21

Well, thank you, Phyllis, for joining us in an episode of our podcast in our blood. And we appreciate you giving us some insight into your story and how you feel. You view our very important subject this season.

SPEAKER_01 34:35

So thank you so much for having me, Judah. I appreciate it.

SPEAKER_02 34:38

Yeah, of course. All right, everyone, thank you again for tuning in, and we'll see you next time. Peace. Thank you for tuning in to another episode of our podcast, In Our Blood. If you want to learn more about Sukosol, 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.