Kimberly Thomas!! An advocate for Invisible illnesses.

Mrs Thomas shares her experience being a mother and a social advocate, while managing her journey with sickle cell and prescription meds.

To learn more visit www.mssctf.org. 

Transcript

SPEAKER_04 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. Hello everyone, and thank you for being in an episode, another episode of our podcast In Our Blood. And today is the first day where we have our guests actually in person with us. So we're reaching new heights here and we're figuring it out as we go. But I think we're having fun, right? We are. Yeah. Today with us, we have Kimberly. Kimberly, do you want to tell us a little bit about yourself?

SPEAKER_01 0:57

My name is Kimberly Thomas, and I have no idea where I'm looking at.

SPEAKER_04 1:02

You can you can say if you want to do the introduction, you can look at it. But I don't know where this is great. I'm gonna keep this in. Just talk to the talk to the say, introduce yourself, and then we'll get to it.

SPEAKER_01 1:14

I'm Kimberly Thomas, and I have not only do I have sickle cell SS, but I'm also a mother of an SS child, and I have been a patient advocate for people with invisible diseases for I'm still in my age, a lot of years. Since I was 10.

SPEAKER_04 1:43

I did my first national speech about civil saladin. Wow. Yeah, that's a major accomplishment at a young age, for sure.

SPEAKER_01 1:54

Yeah.

SPEAKER_04 1:54

Yeah.

SPEAKER_01 1:55

Thank you.

SPEAKER_04 1:56

Yeah.

SPEAKER_01 1:56

Well became out of necessity, not out of wanting. It was definitely a necessity. But I learned very early on that I had to fight for me.

SPEAKER_04 2:07

Right. You know, and I don't know the full details, but you gotta to be able to advocate for yourself at that young of an age, even out of necessity, is a huge accomplishment.

SPEAKER_01 2:18

So I did not meet my first person, another person with sickle cell, until I was a junior in high school.

SPEAKER_03 2:30

So I never really I never had that connection.

SPEAKER_01 2:35

Yeah.

SPEAKER_04 2:36

Did they have a lot of community when you're around that age with sickle cell?

SPEAKER_01 2:40

They did have a sickle cell camp that I went to one time. Um, I didn't know anybody. It wasn't fun. I'm gonna be honest, it wasn't fun. But I think probably because it was the wrong time of year, right? It just seemed like there were a lot of people that were not feeling well by the end.

SPEAKER_04 3:00

So I I remember when I first met people with sickle cell for the first time. I didn't I knew them for a while and I just didn't even make the connection that they both that we both had sickle cell.

SPEAKER_02 3:13

Yeah.

SPEAKER_04 3:14

Um and you know, I couldn't really imagine where what my life would be like without the sickle cell task force and community around me to make sure that you know they knew I was different, but you know, how I could better myself and better the people around me so that you know we all felt comfortable and safe. But yeah, living in a in a world where sickle cell wasn't really known, and you know, even now it's not, but I couldn't really imagine what that was like.

SPEAKER_01 3:46

My I remember my cousin introducing me to one of her friends that had sickle cell. And I remember feeling like, oh my gosh, like we're gonna click, we're gonna be so close, and she knows what I'm going through. Right. But just like with anything, everybody has different experiences.

SPEAKER_04 4:08

Yes. So And just because you guys relate, you know, you're still human beings, there's other stuff that impacts, you know, yeah.

SPEAKER_01 4:15

But even the way that we handled our journey was different.

SPEAKER_04 4:18

Yeah.

SPEAKER_01 4:18

You know, she didn't drive, she stayed with her parents, she didn't, you know, she was it very much consumed her negatively, versus my parents were like, you have this is not an excuse for anything. We're gonna adapt and figure this out.

SPEAKER_03 4:40

Right.

SPEAKER_01 4:41

So I still had very a very regular age of passage, I would say. You know, as far as I still had to keep up with my homework. I still had to, you know, take driver's ed and all of those things and get a job.

SPEAKER_04 4:59

Right. You still felt the need to go out there and, you know, do do what made you feel good and and you know, push yourself to be, you know, stronger, I guess I would say.

SPEAKER_01 5:12

Yeah, I think what sickle saw you had, you don't yeah, you don't have that choice.

SPEAKER_04 5:15

Yeah.

SPEAKER_01 5:16

And not just the sickle cell, I think what Yeah, that's good to know for sure.

SPEAKER_04 5:20

All right.

SPEAKER_01 5:20

Judas' phone was ringing, yeah.

SPEAKER_04 5:22

Yeah, my phone, my phone was ringing. We just learned about super DD. I never knew about that. But yeah, it's good to know. Um, all right. So getting into more of the topic about why you're here. How do you feel like medication impacted your life from childhood to adulthood? Prescription medication.

SPEAKER_01 5:43

Medication is a necessity, right? And many people can have different ideas about, you know, mind over matter and you know, they're alternatives to things. And I do believe that they are other things that can assist you, but medication for most of us is a necessity.

SPEAKER_03 6:03

Right.

SPEAKER_01 6:03

I believe that if you don't start with a plan, it's very easy to slip into misuse independency.

SPEAKER_03 6:11

Right.

SPEAKER_01 6:11

I was given my first narcotic at four. So once you start there and that's what they're giving you, it's only a matter of time that that doesn't work and it has to go to something else. At the same time, because my parents were diligent on there being a protocol of things that needed to happen before, you know, we just went straight there, I think it was easier for me. I never had an issue with, well, let me just take more than I am supposed to in numb out. And I think that that is because I had a strong foundation. I had other things to depend on. It's a catch 22 because oftentimes, especially when I was younger, that was their go-to. They did not know anything beyond that. It was medicate them so they stop crying, right? Give them some blood, and then we'll just keep medicating them until they say they're until their blood levels out and we'll send them home. And then the cycle will repeat itself. For some, becoming medical dependent on medications wasn't their fault.

SPEAKER_02 7:39

Right.

SPEAKER_04 7:39

No, I don't think it's really if I feel like if you become addicted to your prescribed medication, I don't think it's your fault. I think it's that, like you said before, you didn't have a base, you didn't have a system, and you know, you're being offered drugs from a young age where you've been taught pretty much your whole life to take these medications. It's hard for you to say, I don't need this. You know? It's hard for you to say, I don't want this. So yeah, I feel like it can definitely lead into an addiction, but I'm glad to hear that for you, you know, you had a strong base. I did. Yeah.

SPEAKER_01 8:24

What was your base? Of a very strong support system as far as my parents.

SPEAKER_03 8:31

Yeah.

SPEAKER_01 8:32

My mother was a researcher by nature, my faith was very strong. When I was younger, she took me to you know, to speak to therapist about what it was feeling like because it's very easy to just be like, I'm over this. Right. And they were times where I was over it, even in adulthood, where you're just like, I'm I'm I'm tired.

unknown 8:58

Right.

SPEAKER_01 8:59

This sucks. Like, I'm never, it seems like you're never not going to feel like this. Well, maybe you'll never be sick anymore. Okay.

SPEAKER_04 9:12

Maybe.

SPEAKER_01 9:13

Maybe.

SPEAKER_04 9:13

Yeah, and most honestly, not most not likely. Yeah. Not likely. Especially living with sickle cell, you know.

SPEAKER_01 9:20

Especially living with sickle cell.

SPEAKER_04 9:22

There's tons of different things that we can contract. You know, there's tissue damage at each time that we have a crisis. I feel like it's really hard for people with sickle cell to stay healthy.

SPEAKER_01 9:34

Definitely.

SPEAKER_04 9:35

Someone, you're saying someone told you that?

SPEAKER_01 9:38

Yeah. Did you feel bad? Yeah. I've I've been told some very, very crazy things. I was told that there was something I didn't repent for. What? Yeah, I was like, but I was, you know that you're born with it, right? Like I wasn't out sleeping around somewhere and caught it, or I was so what did I do?

SPEAKER_02 9:57

Yeah.

SPEAKER_01 9:58

But that's what they thought. I had a, you know, I've had doctors flat-out lie to me and say that they have treated sickle cellars before. And then then the next sentence asked me, Well, do you know how you contracted it?

SPEAKER_04 10:12

Do you know how you contracted sickle cells?

SPEAKER_01 10:14

Sir, you sir, you've never treated us upset. Sorry.

SPEAKER_04 10:18

That's ridiculous.

SPEAKER_01 10:19

I've looked over and seen doctors Googling on WemMD. It's been a long time since I was in med school, but the it doesn't sound like you need that type of medication. You don't know what I need because you never treated us before. Right. And even if you have, we have so many different nuances in our bodies. Yeah, that need to be addressed. Some of us have hip replacements, shoulder replacements, bone deterioration, you know, spleen, gallbladder, you name it.

SPEAKER_02 10:52

Right.

SPEAKER_01 10:52

I think it's very easy for them to feel like if this is what it is, we can cookie-cutter. This is what's supposed to fix you. And when it doesn't, and you combine that with the fact that you're dealing with the mental part, I can I can see it very easily being like, I don't want to go to the ER, I don't want to go to the hospital, I'm just going, I'll take an extra dose.

SPEAKER_04 11:17

Exactly. And you can't, I feel like you can't promise people who aren't well that you're going to get better simply by taking this pill if you have other underlying issues. And then I feel like that leads to a lot of, and I I've experienced this myself, that leads to a lot of depression and like something is wrong with me.

SPEAKER_03 11:39

Definitely.

SPEAKER_04 11:40

And it's like trying to get back to some sort of normalcy, but the you know, the pills are not the answer.

SPEAKER_03 11:50

They're not. No. Yeah.

SPEAKER_01 11:54

At any point But it is something that needs to be available. Right. Because the fact of the matter is trying to go through a pain crisis without getting any medication when you have nothing, and you're just trying to woo-saw it out, literally feels like you're dying.

unknown 12:16

Right.

SPEAKER_03 12:17

Yeah.

SPEAKER_01 12:18

And I think that we've all been there at one point where we're just like, if somebody doesn't give me something, I'm gonna lose it. And depending on your life circumstances and where you are mentally, it is very easy to say, I'll take anything.

SPEAKER_04 12:38

Yeah, because what's the point?

SPEAKER_01 12:40

I just want to get through the night.

SPEAKER_04 12:42

Yeah. At any point, did you try to go life without medication? I did. Yeah.

SPEAKER_01 12:51

Telling all my business. Yes. Yes, I did. I've tried three times to just go and say, okay, I'm not gonna do this. I'm not gonna take anything. I'm just gonna trust God and and drink my water and do everything and just mind over matter.

SPEAKER_02 13:14

Right.

SPEAKER_01 13:15

Mind over matter only works if your mind is working.

SPEAKER_04 13:19

Right. And how is it working when you're under all these medications? The pressure that you're going to get better, you know, obviously your underlying illness.

SPEAKER_01 13:31

The pressure from sickle cell crisis alone will make you not be able to have a clear thought.

unknown 13:38

Yeah.

SPEAKER_01 13:38

For those people who have never experienced it or have no clue of how that feels, I often say, have you ever had a bad toothache? And you can feel it pulsing. Going into a crisis feels like every time your heart beats, your body is about to pop.

SPEAKER_03 14:02

Right.

SPEAKER_01 14:03

That your vessels are clogged and they're stuck and stuff's not moving, and your body is swelling, and you're just you feel like, okay, if this doesn't stop, you're gonna pop. I'm gonna pop.

SPEAKER_03 14:19

Yeah.

SPEAKER_01 14:20

And to feel that way and then say, but think about alternatives. You know, did you take a shop? Take a hot shower and see how you feel then.

SPEAKER_04 14:29

Yeah, are you active enough? You know, are you are you taking your medication?

SPEAKER_01 14:34

Did you take did you drink enough water today?

SPEAKER_04 14:36

Yeah.

SPEAKER_01 14:38

And you do the song and dance when you do decide to go into the hospital. Well, you do go to the ER. You feel like you're doing, I talked to, I've said this a number of times, you feel like you're doing the interview for a talent show. Like, let me perform for you. I don't want to say that I know more than you because then you'll be like, oh, she's not really in pain. But I don't want to be here, you know, crying because then you'll say I'm being dramatic. So it's this constant, like back and forth. Yes, I know you know this already, but yeah, my pain protocol says XYZ.

SPEAKER_02 15:18

Right.

SPEAKER_01 15:20

When I should be able to go in there and be honest, I haven't slept in three days.

SPEAKER_04 15:27

And they're there to help you. It's not like you have to be, I mean, I'm not saying you have to be rude to them, but you shouldn't have to be so considerate about your feelings, egos. But you do. Yeah.

SPEAKER_01 15:38

You do. It is very, and especially because it being us and and it being known as African Americans, you know, African American disease.

SPEAKER_03 15:51

Right.

SPEAKER_01 15:52

There's already stereotypes attached to that.

SPEAKER_03 15:55

Yeah.

SPEAKER_01 15:56

There's already medical biases when it comes to us, period. Whether we are coming in for a toothache, whether we're coming in to have a baby, or whether we're coming in with sickle cell or diabetes, it doesn't, it doesn't negate the fact that we have to strip away all the filters that you have for you to understand us and to think that we're not trying to game you. And I have had some really rough experiences in the hospital in the reverse, where they have tried to game me.

SPEAKER_03 16:38

Yeah.

SPEAKER_01 16:39

But that's not what's considered the norm. The norm is y'all coming in, yelling, and showing out and crying and doing this, you got an attitude, you're being abrasive, you're being hostile.

SPEAKER_04 16:51

Yeah. And we're already in pain.

SPEAKER_01 16:54

I'm not being hostile. I'm literally sitting here.

SPEAKER_04 16:57

Trying not trying not to lose it.

SPEAKER_01 16:59

Trying not to lose it.

SPEAKER_04 17:01

Yeah.

SPEAKER_01 17:01

Trying not to do anything other than to live. Because in this moment, it feels like I'm not going to.

unknown 17:13

Yeah.

SPEAKER_01 17:13

And it's very difficult when you don't feel like you're being understood to misuse it. Like we said before, misuse at home.

SPEAKER_03 17:22

Right.

SPEAKER_01 17:23

I've had dark days where I'm just like, you wouldn't know the difference. If I took these and fell asleep and did not wake up, y'all would just say I had a stem cell crisis and she died of stem cell. Well, nobody checked.

SPEAKER_03 17:33

Yeah. Yeah. It takes a severe amount of discipline to advocate for yourself, to be honest with your healthcare professional and to do it in a manner where you are saying You're being respectful.

SPEAKER_01 17:58

Yeah, as much respect you're asking of me, I'm asking of you. Yeah. And that's not always received well.

SPEAKER_04 18:06

Yeah. And a lot of other patients, they don't have to deal with, you know, trying to balance that respect aspect. They just get their treatment.

SPEAKER_03 18:15

Yeah.

SPEAKER_04 18:15

But a lot of the stigmatism that you said that we have around people of color, people with sickle cell, it's very hard to, you know, act in a way where you're normal and you're you're saying what needs to be said and you're getting the help that you need. Why are we not getting the help that we need?

SPEAKER_01 18:34

And why don't you understand that I still need, I'll still need help? It's not, it's not like you're going to give this to me once.

unknown 18:42

Right.

SPEAKER_01 18:42

And then five years from now, I'm going to be, everything is all ready, all better.

SPEAKER_02 18:46

That's not that's not how that works.

SPEAKER_01 18:48

That's not how it works.

SPEAKER_02 18:50

Yeah.

SPEAKER_01 18:50

And you have to understand that with that age and with that constant building up and breaking down of our bodies, then our needs for our medication will change. You don't need this, you don't have what made you feel better at two when you were in pain is not going to be the same as what you'll need at 32.

SPEAKER_03 19:18

Right. Simply because life has happened.

SPEAKER_01 19:24

More damage has happened. And that's regardless of you being diligent about your care or not. Your body is not going to say, okay, I'm not gonna pump out any more sickle cells. It's just it's not gonna happen.

SPEAKER_04 19:39

Yeah.

SPEAKER_01 19:40

And it's okay.

SPEAKER_04 19:42

It's just why are we struggling to give me the resources to deal with that? Yeah.

SPEAKER_01 19:47

But why are we acting like there's a problem when I'm saying what you were giving me is no longer working?

SPEAKER_03 19:55

Yeah.

SPEAKER_01 19:56

I do understand people. I talked to my physician about this interview with you, and she was telling me about another patient. And she said, something I want you to remember is you're one of 100. I said, okay. She said, I've never had an issue with you. You've never had a dirty UA. You've never led me to believe that you're misusing anything. But the patient I saw before you, that family just cussed me out. They tasted positive for cocaine and fentanyl. And then said, but what I do in my pleasure time doesn't have anything to do with my sickle cell life. How am I supposed to deal with that? Now to that, I say, hold on.

SPEAKER_02 20:45

That's a bit wrong.

SPEAKER_01 20:48

I don't know why you went there, but your body with sickle cell is on a constant tightrope.

unknown 20:56

Right.

SPEAKER_01 20:57

The fact that you would risk it like that, yeah, that's another issue.

SPEAKER_04 21:02

And you know, growing, you know, I'm not trying to excuse him or anything, but growing up when you have all these medications and you're taking painkillers all the time is really easy in times of desperation or or just having fun to say, oh, it doesn't matter what I take. I'm gonna be taking medication for the rest of my life. And then they slip into other things and then that life gets a little bit shorter. Yeah, and they don't really realize what it's doing to their body, they're just you know taking more painkillers.

SPEAKER_01 21:39

Because they already feel like their body is damaged.

SPEAKER_04 21:42

Right. Yeah.

SPEAKER_01 21:43

So how much more damage can I really cause? It's I'm already jacked up.

SPEAKER_04 21:47

Yeah.

SPEAKER_01 21:48

But that's not true.

SPEAKER_04 21:50

Does that I feel like that leads into my next question pretty well? Do you did you ever feel different because of your sickle cell and because of the fact that you Taking medication constantly. I know for me personally, I'm walking around in school and I got like medication shaking in my bag and stuff. People are asking me what that is pretty much my whole life.

SPEAKER_01 22:13

So I was a sophomore when I got sick at school and I ended up in the hospital. Oh yeah. And I'm in the hospital room, and all of a sudden, like seven people from my high school rushed into my room. And there was this rumor that I had died. That's like wait, what? But she has this, and they didn't know what sickle cell was. So they were just like, it's kind of like AIDS, right? I'm like, wait, hold on, hold on.

SPEAKER_02 22:47

What?

SPEAKER_01 22:49

Let me let me tell you what's going on. So yeah, you always feel different. You do. I remember going to the nurse's office and she would be like, okay, Kim, do you want me to call your mom? Yes. Why don't you just bring your pain medication here? I still want you to call my mom before I take anything here. Because what's not gonna happen is somebody be like, oh, she's falling asleep in class. She's on something. Well, I am, but I needed it because I am going through something. You you constantly feel that. Yeah. In school, I did feel safer than I did after when I when I went into the workforce.

SPEAKER_04 23:34

That was hard. Because a lot of people aren't gonna try or want to understand your situation.

SPEAKER_01 23:39

They don't care. It's a business. Yeah. You're there to do a job.

SPEAKER_03 23:43

Right.

SPEAKER_01 23:44

And when you know that you're going to be sick, I ended up working twice as hard to prove my worth so that when I was sick, I was still worthy of being considered a team player.

SPEAKER_04 24:00

I I feel the same way. I feel like I do that all the time. I don't really see a way out of it. You know, I feel like that's just when you have any sort of type of chronic illness, I feel like that's something that you kind of have to get used to.

SPEAKER_01 24:13

Yeah. And you constantly feel like you're playing ketchup.

SPEAKER_04 24:16

Yeah.

SPEAKER_01 24:16

And you're constantly feeling like I can't be sick here.

SPEAKER_03 24:20

Right.

SPEAKER_01 24:21

I've had crises in my office where I had to hide under my desk. I have left work on Friday afternoons, gone to the ER, been in the hospital, asked to get discharged Monday morning and go straight to work. Wow. And it works until it doesn't.

SPEAKER_02 24:40

Yeah.

SPEAKER_04 24:41

Because there's always that crash, and you gotta be ready for it.

SPEAKER_01 24:45

My boss said if you are too sick to be here, you just don't come back.

unknown 24:51

Got it.

SPEAKER_01 24:52

Yeah. It didn't matter that I work for you six days a week. It didn't matter that my numbers were always higher than anybody else's, it didn't matter at the end.

SPEAKER_03 25:01

That hurts. Yeah. Which brings me right back that if your mental isn't straight, if your spiritual isn't straight, you're going to depend on something.

SPEAKER_01 25:18

And if the only thing you have to depend on that's ever worked to numb the pain is your medication, is a slippery slope.

SPEAKER_04 25:26

Yeah. Do you feel like, and we kind of already covered this, but just trying to squeeze it all out of you, do you ever feel like there was a time where you've been really tempted to, you know, take extra medication?

SPEAKER_03 25:42

Yeah. Yeah. One particular time I went to the ER. I'd been sitting in the ER lobby for six hours. Right. I had cried all I could cry. I I didn't have any more in me.

SPEAKER_01 26:02

Like I was literally passing out at one moment. And they just said, we're understaffed, we're understaffed, we're understaffed. We're getting through 'em, we're getting through 'em. Finally, I just asked, yo, take me home. Take me back. Take me back home.

SPEAKER_03 26:21

Yeah.

SPEAKER_01 26:21

And I sat there and I was really like, now my body is cold. You know hospitals are cold.

SPEAKER_04 26:28

Yeah. For some reason, always.

SPEAKER_01 26:30

I was sitting in this lobby for six hours in the car.

SPEAKER_03 26:33

Right. Him in my purse. Yeah. You just gotta go home.

SPEAKER_04 26:41

And you don't really even want to be there to begin with. No, you don't.

SPEAKER_01 26:45

No, you don't.

SPEAKER_04 26:46

So it's it's hard, especially when you're not getting care that you need to want to stay.

SPEAKER_01 26:51

So yeah, there are times where the pain takes over everything, and you're just like, I just want it to end. And in those times, I don't even know what made me not do it. Well, I don't even know what made me not do it. Because I definitely wanted to.

SPEAKER_03 27:10

Yeah.

SPEAKER_01 27:10

You definitely have those those thoughts. Yeah. But I can't be the next hashtag. I just can't. I can't be the next hashtag. I don't want to be on the next program.

SPEAKER_04 27:21

Put me in anybody's bio.

SPEAKER_01 27:22

Yes, please. I'm gonna do what I need to do. Yeah. And now that I have a son, it's even I won't, if I have to take more than two doses, I'm leaving.

SPEAKER_04 27:30

Right.

SPEAKER_01 27:31

I won't be caught slipping as a mother.

SPEAKER_04 27:34

And it's hard, it's that's a there's a lot of pressure on you because one, you're a mother. Two, I feel like if you're African-American male or woman, there's gonna be more pressure. You know, just taking extra medication in general just doesn't look good. It doesn't. And not only that, you don't want to be like, you don't want to be intoxicated or feeling like you're a different person in front of your family.

SPEAKER_01 27:59

No, not at all.

SPEAKER_04 28:00

Yeah.

SPEAKER_01 28:01

Because you do have those types, people don't understand that sometimes you sickle cell is tiring.

SPEAKER_04 28:07

Right. So they may think we already are more tired than everyone else.

SPEAKER_01 28:12

Oh, because she took something, or he's just fallen asleep, he's not he took something. No, do you know how much energy it takes to get through a day?

SPEAKER_03 28:20

Right.

SPEAKER_01 28:22

You're already fighting stereotypes doing the right thing.

SPEAKER_03 28:26

Right.

SPEAKER_01 28:28

I just can't I can't give you the power to say because you remember this time that you you took more, and now I I can't trust you to give you anything now.

SPEAKER_03 28:36

Yeah.

SPEAKER_04 28:38

Yeah.

SPEAKER_01 28:39

Because that's what's going to be said, and that's what they want to say.

SPEAKER_04 28:42

Yeah. They want, they want, they want to lead to that.

SPEAKER_03 28:46

Yes.

SPEAKER_04 28:47

Do you feel like you have your your medical providers, they give you support? Do you feel like they have options for that?

SPEAKER_01 28:59

Now. Now, now that wasn't always the case. I believe that they trust me now because I'm able to be honest with them and ask for their honest feedback, and they know that I'm diligent about it.

SPEAKER_02 29:14

Right.

SPEAKER_01 29:15

So, yeah. If something happens and I've had my medication stolen before and say, hey, this is what happened, they have refilled it before. They can, you know, help me out. But that's still them. I you still have to fight stereotypes even when you go pick up your prescription. I've had the pharmacist sell me. Do you know how much money you're you uh how many months of rent your medication is worth? How do you know that, sir?

SPEAKER_04 29:47

Why are you keeping track of that? It's not your job at all. How do you know that? That's not your job at all. Yeah.

SPEAKER_01 29:53

And why are you telling me that? Or you ask, what what is it that you actually have? That's not your concern. Feel the prescription, sir.

SPEAKER_04 30:04

Yeah, you're not the doctor. You're just, you know, the medication. Yeah, you didn't prescribe the medication.

SPEAKER_01 30:11

Which is another issue because then you have nurses who don't want to feel who don't want to give you the pain medicine because they're not comfortable, even though the doctor prescribed it. So you're constantly going through hoops trying to prove that you're trustworthy to everybody.

SPEAKER_04 30:25

Right.

SPEAKER_01 30:27

But why should you have to do that?

SPEAKER_04 30:29

Yeah. All you did was just be in pain, and now you had to prove to everyone that you're some other type of.

SPEAKER_01 30:37

When you could stay home and you have it, that's where the slippery slope is. I'm just saying, yeah, I got I can take this right here.

SPEAKER_03 30:46

Yeah. That's dangerous. Yeah. But I can see why how it could happen. Yeah.

SPEAKER_01 30:58

I think that in our community especially, there needs to be of reality that mental health is a necessity. It needs to be studied, talked about, and accepted of how you feel going through your life dealing with what you deal with.

SPEAKER_03 31:20

Right.

SPEAKER_01 31:21

When you are fine one day and then you can't walk the next, your mind is at a constant battle. That's a lot.

SPEAKER_03 31:32

Yeah, that is.

SPEAKER_04 31:33

Yeah. And I feel like it's it's important for people to be able to talk about those things, but a lot of times we can't.

SPEAKER_02 31:43

Yeah, that's true.

SPEAKER_04 31:44

Yeah. Do you feel like you can talk to your medical providers about, you know, how the drugs are affecting you or affecting your life? Or do you feel like it's just kind of like an exchange where they're just giving you the medication?

SPEAKER_01 31:58

No, I think that I've built that rapport up that I can do that now.

SPEAKER_02 32:04

Right.

SPEAKER_01 32:04

But it took work.

SPEAKER_02 32:06

Right.

SPEAKER_01 32:06

It took me going to see my doctor when I wasn't sick to have these conversations. It meant me going to the hospital when I wasn't in crisis to have these conversations.

SPEAKER_04 32:18

Yeah, I wouldn't even think to do that.

unknown 32:20

Yeah.

SPEAKER_01 32:20

Yeah.

SPEAKER_04 32:21

No one wants to be there.

SPEAKER_01 32:22

No. But I mean, you are a completely different person when you are in your right state of mind and it not in debilitating pain than you are when you're in crisis.

SPEAKER_04 32:36

Yeah. And it makes sense to, you know, prep your head and make sure they know this is who I am. This is how I'm feeling in that moment. Doesn't mean it's who I am all the time, but this is what I need. That makes sense.

SPEAKER_01 32:48

And this is the real me. Yeah. And this is the me that I'm trying to get back to. So when I am in pain and I am crying and I am telling you it's not enough.

SPEAKER_04 32:57

And if I'm not acting like this, you know there's a problem.

SPEAKER_01 33:00

This is who I'm trying to get back to. Help me get back to her.

SPEAKER_04 33:04

Right.

SPEAKER_01 33:05

Don't just judge me because you're like, who cares? Yeah. She's always like this. No. This is who I am when I'm in crisis.

SPEAKER_04 33:14

Yeah. I feel like that's a really good perspective of how to handle that. Yeah. That's good to know. I'm glad that we're putting this on. Yeah. That's my take. I think that's gonna be one of my main takeaways here. In what ways have your prescribed medication led to like anything positive in your life? Like, how has it positively affected you versus negatively affected you?

SPEAKER_01 33:40

We're not talking about pain medication, we're talking about like all medication.

SPEAKER_04 33:43

No, I'm saying, you know, you take your medication, it makes you feel good. Do you feel like there is more of a benefit to it, to what you're taking, or do you feel like there's only just this exchange of pain medication? Do you feel like you're trying the medication that you're being prescribed is helping to bring you back to who you were?

SPEAKER_01 34:05

Yes. Yes. In that respect, yes.

SPEAKER_02 34:08

Yeah.

SPEAKER_01 34:09

Would I prefer not to take it and not to need it? Definitely.

SPEAKER_02 34:13

Yeah.

SPEAKER_01 34:14

And they are a lot more aspects of me hating to take medication versus the feeling that, okay, it's helping me. Does. Yes, it helps me get through the pain, but you also, it's also a constant reminder that it's gonna happen again. We feel this prescription every month because they know you're gonna be in pain again.

SPEAKER_03 34:46

Right. Yeah.

SPEAKER_01 34:48

But without it, I'd be gone.

SPEAKER_04 34:50

Yeah. And I feel like that's where a lot of people get confused between the problem, are you addicted or are you dependent? Because like you said before, without it, I'd be gone.

SPEAKER_00 35:03

I would.

SPEAKER_04 35:03

Yeah. And it's hard for some people to make that distinguishing factor if they don't have the base that you were talking about.

SPEAKER_01 35:12

Because people believe that dependency is is automatically negative.

SPEAKER_02 35:16

Right.

SPEAKER_01 35:17

And in our case, it's not a negative or positive, it's a necessity. And there's a difference. You know what I'm saying? I'm not dependent on you because I wanna be. I'm dependent on you because I need you to survive.

SPEAKER_03 35:35

Right.

SPEAKER_01 35:36

I was born with something that's debilitating, and it's going to stay happening. And it's gonna get worse before it gets better. Are you okay, honey? Oh yeah, I yawn. I'm fine. Okay, I'm fine. Um, it's going to get worse before it gets better. So these are the tools that I need in my toolbox.

SPEAKER_02 36:02

Right.

SPEAKER_01 36:03

You know what I'm saying?

SPEAKER_02 36:04

Yeah.

SPEAKER_01 36:05

You wear glasses.

SPEAKER_02 36:07

I need them. I'm blind.

SPEAKER_01 36:09

You need them.

SPEAKER_02 36:10

Yeah.

SPEAKER_01 36:11

So if somebody comes up to you and be like, you don't need them, you look better without them, and takes them, it's a problem.

SPEAKER_04 36:17

I can't see.

SPEAKER_01 36:17

It doesn't mean that there's something wrong with you because you have them. I need them.

SPEAKER_02 36:22

Right.

SPEAKER_01 36:23

And it's not, my vision isn't just automatically gonna get better because you stole my glasses.

SPEAKER_04 36:28

Yeah. And that's essentially what people who say, do you know, do you know how much your medication adds up to in rent or how much rent I could pay for?

SPEAKER_01 36:40

And I I felt all that wasn't even a microaggression. I felt all of the aggression in that.

SPEAKER_04 36:45

You're taking the thing that I need to live a sustainable life.

SPEAKER_01 36:50

And calling me a drug dealer.

SPEAKER_04 36:51

Yeah.

SPEAKER_01 36:52

That I'm not utilizing it to make the money. That do you know how much money I can make off of this? Do you know that I will die without it? Right. This isn't for play play. Nobody takes this because it's fun.

SPEAKER_04 37:04

Well, no, there's some people.

SPEAKER_01 37:07

There are people that take it because it's fun. I don't understand that.

SPEAKER_04 37:10

Yeah.

SPEAKER_01 37:10

And that's a whole nother aspect to it. Um, I think that people in our situation, when we see someone who isn't sick abusing pain medication and opioids for personal use, you know, to party with or whatever, it does leave a nasty taste in my mouth because I'm like, how dare you? Do you know how hard it is to wake up every morning just to live? And you over here just messing yourself up?

SPEAKER_03 37:42

Right.

SPEAKER_01 37:43

Because it's not just you. When they say the opioid epidemic, they're not just talking about people who abuse it. They're talking about us.

SPEAKER_04 37:52

Yeah. People who people who need it. Yeah, and need it, yeah. We're part of the numbers too.

SPEAKER_01 37:58

So for someone who needs it, yes, that's that's enough to make you want to fight.

SPEAKER_03 38:06

Yeah, yeah.

SPEAKER_01 38:08

Because we don't have a choice. Right. This isn't something that we get to do Friday nights just to have a good time.

SPEAKER_03 38:15

Yeah. That's not the case.

SPEAKER_04 38:19

What what do you have or a piece of advice for s for the people watching on just you know, how how how would how would you say would be a good way of, you know, managing your medication and feeling safe enough to have that conversation and build these relationships with your doctors?

SPEAKER_01 38:40

I would say besides talking to them honestly when you're not in pain, is one. Another I would say is you need to find a support system that will tell you the truth.

SPEAKER_03 38:57

And that you can tell the truth to. And you need to understand how medication affects you.

SPEAKER_01 39:07

You never want to go all the way to taking the extreme if a mid-dose will do you.

SPEAKER_03 39:17

Right.

SPEAKER_01 39:18

You know what I'm saying?

SPEAKER_03 39:19

Yeah.

SPEAKER_01 39:20

And for people with young ones, I would say be very diligent on what they try to give your child because you can't go back.

SPEAKER_04 39:31

Yeah.

SPEAKER_01 39:31

It's very hard.

SPEAKER_04 39:33

Very slippery slope.

SPEAKER_01 39:34

To go back. Yeah. My child is on ibuprofen, praise God. And that's it, that's all. Yeah. But I I do work to make sure that's it. He is okay. I am the mother that will check his spleen and ask him how you feel today and how do you rate yourself? And you know, which is the number one question that I hate. Rate yourself one through ten. It hurts.

SPEAKER_04 40:01

It's not fun to be told that every single day you're gonna have to be having them.

SPEAKER_01 40:06

Can I give you something else? Can we do adjectives?

SPEAKER_04 40:09

Yeah.

SPEAKER_01 40:10

Can I tell you something? Because these faces ain't working.

SPEAKER_04 40:13

My mom gave me a color or a fruit sometimes, and then even that got tiring after a while. So now I gotta really think about it.

SPEAKER_01 40:19

My parents did knives. Knives? Knives. I had a it was a butter knife, a steak knife or a butcher knife. What? Yeah, so that's a good one. When it first started, it's it's achy, but it's still it's a dull pain, but it's an achy pain. That's a butter knife. And then when it started getting sharper and I needed, you know, something, it was a steak knife. Now it's it's in there. And if it was a butcher knife, take the hospital.

SPEAKER_02 40:51

Yeah.

SPEAKER_01 40:52

But that lasted my whole life until my parents passed. That was where you at, baby? What knife we had? Right. You know, but and I and every every parent has a system with their kid, but that's important. And I had very open conversations with my parents too about what I was feeling, how it hurt, when it hurt. Um, because another thing is civil self doesn't give you a warning bell all the time. Sometimes.

SPEAKER_04 41:27

Sometimes you get a little ache before it happens, but most of the time it's kind of just there. Yeah. Yeah.

SPEAKER_01 41:34

And then be like, but you were just fine yesterday. That was yesterday.

SPEAKER_04 41:38

And as soon as you wake up, or sometimes even midday. I'm just saying my own business. Yeah.

SPEAKER_01 41:43

If the the temperature dropped, and now my knees hurt.

SPEAKER_04 41:47

Right.

SPEAKER_01 41:48

It is what it is.

SPEAKER_04 41:49

Yeah.

SPEAKER_01 41:50

I ate something bad. Other people would have a nauseatic stomach. Now my whole body hurts. It is what it is.

SPEAKER_04 41:55

You gotta deal with it, you gotta learn to deal with it. Yeah.

SPEAKER_01 41:58

You just need to be honest and be open and know that you are okay, regardless.

unknown 42:06

Yeah.

SPEAKER_01 42:07

Even if you have to take it, you're okay.

SPEAKER_04 42:12

Alright, everyone. Well, thank you again for tuning in. Thank you for the camera.

SPEAKER_00 42:18

I didn't look over there one time.

SPEAKER_04 42:19

You didn't.

SPEAKER_00 42:20

Sorry, y'all.

SPEAKER_04 42:21

It's okay. You know, it's a new thing. We'll see if we end up sticking with it or not. So we'll see. But the people want to see our face, they want to see the people who, you know, are dealing with it. So here we are. Yeah.

SPEAKER_01 42:32

Alive and living color and thriving.

SPEAKER_04 42:35

Yep. So yeah. Thank you so much, Kimberly, for joining me today.

SPEAKER_00 42:40

And I'm very proud of you.

SPEAKER_04 42:42

Yeah. Oh, well, thank you.

SPEAKER_00 42:44

Very proud of you.

SPEAKER_04 42:46

This is awesome. I was, you know, I yeah. I feel like this is something that needed to be said to the people, and you know, I'm glad that we can provide it together. So yeah. Yeah.

SPEAKER_01 42:58

It's therapeutic?

SPEAKER_04 42:59

Yeah. I think it's therapeutic for me, and I learned a lot. So, yeah, for sure. I'm proud of you. Alright, guys. Peace. We'll see you in the next one. 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 out.