Matt Connarton Unleashed: Charles Mattocks

0:00 Speaker 1: And we have with us now via phone. I believe

0:03 Speaker 1: our friend Charles Maddox is there. Charles, is that you.

0:07 Speaker 2: Hey, how's everybody doing this morning?

0:10 Speaker 3: Good?

0:10 Speaker 1: Good, welcome, or I should say welcome back. You've been

0:13 Speaker 1: on with us a couple of times.

0:14 Speaker 3: Before over the years.

0:16 Speaker 1: I think the first time. The first time was jeez,

0:19 Speaker 1: it had to be at least five years ago. The

0:20 Speaker 1: first time you were on, I think you had had

0:24 Speaker 1: you put out the documentary about diabetes.

0:27 Speaker 4: Was that okay, yeah, yeah, yeah, that's been out.

0:30 Speaker 3: It's coming back to me now, yeah. Yeah.

0:32 Speaker 1: Well you're a busy guy. You do a lot of stuff.

0:34 Speaker 1: So so welcome to the show on this Saturday morning.

0:37 Speaker 1: Jenny is here of course as well. And the subject

0:41 Speaker 1: of your newest documentary, Trial by Fire, is something that

0:45 Speaker 1: obviously Jenny is she can relate to, unfortunately, because it

0:50 Speaker 1: is about a very serious subject CRPS, complex regional pain syndrome.

0:55 Speaker 3: And let me ask you right.

0:58 Speaker 1: Off the top, Charles, what what was it that compelled

1:02 Speaker 1: you to make this particular documentary Trial by Fire?

1:07 Speaker 2: Yeah, you know it.

1:09 Speaker 4: My mother suffers from from CRPS, and I remember she

1:15 Speaker 4: had it probably about maybe about three two three years

1:20 Speaker 4: maybe even longer and I would go see her, and

1:25 Speaker 4: I really didn't have any understanding of what she was

1:28 Speaker 4: going through. And she was was at a place where

1:33 Speaker 4: you know, she would complain about the pain. Not once again,

1:36 Speaker 4: I was ignorant to what CRPS was. I would just say, well, Mom,

1:40 Speaker 4: maybe you should go to the gym, maybe you should

1:42 Speaker 4: try to stretch it out. You know, you got to

1:44 Speaker 4: walk it out. You know, things like that that you know,

1:49 Speaker 4: really weren't going to help.

1:51 Speaker 2: And then one day I went over there.

1:52 Speaker 4: Now you know, she's a very proud Jamaican woman, and

1:56 Speaker 4: I was there one day and this was you know,

1:59 Speaker 4: like I said, she was doing with a lot of pain,

2:01 Speaker 4: but you know, she was still mobile and so on

2:03 Speaker 4: and so forth. And I remember her saying something about,

2:07 Speaker 4: you know, wanting to maybe not be on earth anymore.

2:11 Speaker 4: And I said, whoa hold on a second. That that

2:14 Speaker 4: you know, my mother talked like this, you know. So

2:19 Speaker 4: at that moment, I literally went online and went to

2:23 Speaker 4: YouTube and just started you know, looking up stuff and

2:28 Speaker 4: online looking up stuff. And I just bumped into someone

2:32 Speaker 4: who I think had CRPS, and it was real bad

2:36 Speaker 4: and they were talking about how bad it was and

2:39 Speaker 4: about suicide and things like that, and that's when I said, wow,

2:44 Speaker 4: you know what, I don't know what this is or

2:47 Speaker 4: what this is doing to her. I get it now

2:51 Speaker 4: because I saw someone else who was explaining it, and

2:55 Speaker 4: I said, you know what, I've got to do something

2:57 Speaker 4: about this. And it was kind of like I wanted

3:01 Speaker 4: to kind of chronicle what she was going through, but

3:04 Speaker 4: through chronicling or trying to chronicle what she was going

3:07 Speaker 4: to go through or going through, you know, I had

3:10 Speaker 4: to kind of reach out into the community to say,

3:13 Speaker 4: you know, let me reach out, try to find other

3:15 Speaker 4: people who were dealing with this, because I want to

3:18 Speaker 4: tell this story, not just her story, but just overall

3:21 Speaker 4: and see what was going on with this condition called CRPS.

3:25 Speaker 4: And that kind of opened up the door and I

3:28 Speaker 4: met some people in Tampa Saint you know, I was

3:32 Speaker 4: living in Orlando at the time, so I met some

3:34 Speaker 4: people who were.

3:35 Speaker 2: In Orlando area.

3:39 Speaker 4: Who were I have the kids of it, and you know,

3:42 Speaker 4: they they said, hey, Charles, you know what would love to,

3:45 Speaker 4: you know, help you tell this story. And that's that's

3:48 Speaker 4: pretty much how it got started. I was really just

3:51 Speaker 4: wanting to see what she was living through, but then

3:54 Speaker 4: also met other people who were dealing.

3:56 Speaker 1: With it as well in terms of reaching out to

3:59 Speaker 1: other people who are dealing with it. Was that, I mean,

4:02 Speaker 1: how challenging was it to find those people? Because CRPS?

4:05 Speaker 1: I mean the average person probably has no idea what

4:07 Speaker 1: it is, and and it's not always uh, you know,

4:10 Speaker 1: as as you mentioned, easy to diagnose. And I mean, Jenny,

4:13 Speaker 1: how long is.

4:15 Speaker 3: The years before the diagnose yours?

4:17 Speaker 1: Yeah, you know, obviously, And and the thing is too,

4:19 Speaker 1: it's it's such a conundrum. It's like when you have

4:23 Speaker 1: an illness that is rare. Of course, it's it's harder

4:26 Speaker 1: to diagnose because fewer medical professionals have seen that particular illness,

4:32 Speaker 1: and there's a lack of research and whatnot because it's

4:34 Speaker 1: you know, it's not again, it's not something most people

4:36 Speaker 1: have heard of. You know, everybody knows what diabetes is,

4:39 Speaker 1: but the average person has no idea what CRPS is.

4:42 Speaker 1: So was it was that challenging finding these people?

4:47 Speaker 2: No, it actually wasn't.

4:48 Speaker 4: The thing is is, you know, there are some some

4:52 Speaker 4: some great groups on social media, whether it's Facebook or

4:56 Speaker 4: whatever it may be. In a particular person that I

4:59 Speaker 4: ran into that was close to me, they had a

5:04 Speaker 4: great support group and also they knew a lot of

5:07 Speaker 4: other people, so they had resources from doctors to experts

5:11 Speaker 4: to uh, you know, hundreds of people that were following them,

5:15 Speaker 4: and that that kind of opened up the door that

5:18 Speaker 4: I found other advocates like at that that time, it

5:22 Speaker 4: was like Barbie Ingele, who was very vocal a few

5:26 Speaker 4: years ago, you know, she still lives about CRPS and pain,

5:31 Speaker 4: and it just started connecting. And because there wasn't much

5:35 Speaker 4: advocacy on it, the fact that this film was being

5:39 Speaker 4: put together was really you know, raising a lot of awareness. Now,

5:44 Speaker 4: they don't get it wrong. It wasn't it wasn't easy.

5:47 Speaker 4: There were there were a lot of nights where you know,

5:50 Speaker 4: at times, because of the pain, it's easy at times

5:55 Speaker 4: to to to.

5:56 Speaker 2: Shoot the messenger.

5:58 Speaker 4: So I had a lot of sleep with sleepless nights

6:01 Speaker 4: at times trying to pull all this together and and

6:05 Speaker 4: attacked at times. Uh you know, but but it was

6:11 Speaker 4: it was it was all worth it. And there's some

6:14 Speaker 4: amazing people out in who are dealing with c RPS,

6:17 Speaker 4: and and you know, I still see, you know, what

6:22 Speaker 4: my mother is going through daily and it's really had

6:24 Speaker 4: taken her her whole, her whole life to be honest

6:28 Speaker 4: with you now you know she's now bedridden and sad

6:32 Speaker 4: to say, and uh so, it's it's it still inspires

6:38 Speaker 4: me to want to get out there and change and

6:40 Speaker 4: because also there aren't many other advocates that are known

6:46 Speaker 4: or can do what what what I can do with this,

6:49 Speaker 4: you know, these films, I kind of feel like it's

6:52 Speaker 4: my it's my, you know, god given destiny to try

6:57 Speaker 4: to continue to fight for people.

6:58 Speaker 2: With see RPS.

6:59 Speaker 4: And I've come to know so many and have so

7:03 Speaker 4: much respect and love for them too as well.

7:05 Speaker 3: That's how we met.

7:06 Speaker 5: How you and I actually met is because of CRPS

7:09 Speaker 5: and what you're doing with Trial by Fire is so

7:12 Speaker 5: vital to get information out there, and unfortunately in America

7:16 Speaker 5: we don't have as much information out there as they

7:19 Speaker 5: do in other countries. When I was in the Netherlands,

7:22 Speaker 5: my girlfriend had gotten into a bad accident and I

7:26 Speaker 5: got to see an entire protocol that they have to

7:28 Speaker 5: watch out for CRPS and people who get injured like that.

7:32 Speaker 5: But we have nothing like that, especially here. But I

7:35 Speaker 5: know that you're not just showing this here in the

7:38 Speaker 5: United States. I know it's been seen in well over

7:42 Speaker 5: what twenty countries. You've won numerous awards with this documentary,

7:47 Speaker 5: and now what's exciting to me is that now it's

7:51 Speaker 5: going to be carried on Netflix soon, isn't it. No, No,

7:54 Speaker 5: Amazon Prime, Amazon.

7:56 Speaker 4: Prim hopefully the next few weeks, which is really exciting.

8:04 Speaker 4: And No, you're right, it's probably been seen in over

8:06 Speaker 4: twenty five countries and and I assume by by uh

8:11 Speaker 4: who knows, I mean at this point maybe millions of people,

8:14 Speaker 4: because it's still getting seen and because it's it's been

8:17 Speaker 4: on PBS, it's been on you know, some great platforms already.

8:23 Speaker 4: So it's it's very exciting. And we plan on even

8:28 Speaker 4: with this new documentary that we're doing Drop by Fire,

8:32 Speaker 4: to go into other countries to kind of examine what's

8:35 Speaker 4: going on right now as.

8:37 Speaker 2: Far as that.

8:38 Speaker 4: But it you know, it's it's it's and I'll say this,

8:41 Speaker 4: it's I wish I wish it was it was easy

8:45 Speaker 4: to to to to get this done. I mean, you

8:47 Speaker 4: think with all the people who are dealing with pain,

8:51 Speaker 4: I mean, hundreds of millions of people are dealing with pain.

8:53 Speaker 4: It's one of the biggest biggest businesses is the pain. Unfortunately,

9:01 Speaker 4: and I don't know how many fad again.

9:05 Speaker 5: Chronic pain patients have been hurt so badly.

9:08 Speaker 4: Of course, of course, and what you're doing you don't know.

9:14 Speaker 2: Oh, I'm sorry, go.

9:15 Speaker 5: Ahead, I'm sorry, I'm sorry, go ahead.

9:16 Speaker 3: No, I was saying, she was just saying, what you're

9:20 Speaker 3: doing is so vital.

9:22 Speaker 4: Yeah, yeah, no, And I was saying that you don't

9:25 Speaker 4: know how many doors I'm knocked. Gone to try to

9:28 Speaker 4: get some small funding just to get this done. And

9:32 Speaker 4: you know, the sad thing, especially with CRPS is there's

9:35 Speaker 4: there's no cure, so there's you know, there's no money

9:39 Speaker 4: in that. So it's hard to find people who who say,

9:45 Speaker 4: you know, yeah, well we'll get involved. I mean, I

9:48 Speaker 4: even reached out to a lawyer. That's that's pushing trying

9:54 Speaker 4: to fight for people with with c RPS. And and

9:57 Speaker 4: you know, you got to figure that a lawyer who

10:01 Speaker 4: might take one case and who could make you know,

10:03 Speaker 4: hundreds of thousands, just not more than that, you know,

10:07 Speaker 4: is is more concerned with you know, how much it's

10:10 Speaker 4: gonna cost, you know what I mean, even even if

10:12 Speaker 4: it was twenty five thousand dollars.

10:14 Speaker 2: But I mean even twenty.

10:15 Speaker 4: Five thousand dollars could do a lot for us, but

10:20 Speaker 4: to get you know, some scene shot. But you know,

10:22 Speaker 4: they can make a million dollars or if not more,

10:25 Speaker 4: on one case, and if they bring in ten cases,

10:29 Speaker 4: they could make, you know, a whole lot of money.

10:31 Speaker 4: But so it's it's everyone is really in it for

10:35 Speaker 4: for for the money, and unfortunately.

10:37 Speaker 3: That's healthcare one hundred percent.

10:39 Speaker 5: That's true. And one of the one of the key

10:41 Speaker 5: treatments what's the RPS is kindamine infusions and for the

10:46 Speaker 5: vast majority of patients are having to pay cash out

10:48 Speaker 5: of pocket because they're you know, or fight. I've been

10:52 Speaker 5: fighting insurance and I've got a provider that's allowing me

10:55 Speaker 5: to use it, but I'm having to fight. And the

10:58 Speaker 5: thing about this is too is yes, CRPS is rare,

11:01 Speaker 5: but people with rare diseases are not. One out of

11:04 Speaker 5: every ten people has a rare disease. And the light

11:07 Speaker 5: that you're shining on this is extremely important in the

11:10 Speaker 5: sense that a CRPS complex regional pain syndrome is the

11:14 Speaker 5: most painful disease known to modern medicine, and as you said,

11:16 Speaker 5: it has no cure. However, seventy percent of people with it,

11:19 Speaker 5: including children, will consider suicide as the option because it

11:24 Speaker 5: is that bad. It's called the suicide disease by the

11:27 Speaker 5: medical community and has been called that for over two

11:29 Speaker 5: hundred years, so it's been a disease that's known but

11:33 Speaker 5: not known enough. And the light that you're shining on

11:36 Speaker 5: this is vital to save lives.

11:39 Speaker 4: Yeah, yeah, yeah. And I've had a few people that

11:45 Speaker 4: I've had to that just reach out to me, and

11:48 Speaker 4: I've kind of had to say, listen, just don't do

11:51 Speaker 4: that and if you have to call me personally and

11:57 Speaker 4: let's talk. Over the years where I've literally had to

12:00 Speaker 4: try to, you know, just talk people out of things.

12:03 Speaker 4: And I remember of late and I like to be

12:07 Speaker 4: real because you know, when when doing an interview, you

12:10 Speaker 4: could always gloss over things and and make everything out

12:13 Speaker 4: to be peachy and keen, but it's really not. And

12:17 Speaker 4: I think that, you know, the people who are dealing

12:20 Speaker 4: with this and the people who need to know about

12:21 Speaker 4: it need to hear the reality that that's out there

12:26 Speaker 4: at times of you know, what they're dealing with, because

12:30 Speaker 4: I hear reality from them all.

12:32 Speaker 2: The time, and it's like, wow, I wish I could

12:34 Speaker 2: do more.

12:34 Speaker 4: But I had to release a lady recently who this

12:37 Speaker 4: was a couple of months ago, and she would always

12:40 Speaker 4: say just the nicest things to me. She would just

12:42 Speaker 4: I didn't know her, but she just reached out and

12:46 Speaker 4: you know, she was dealing with CRPS and and I

12:49 Speaker 4: remember before the last time where I spoke, so I saying, listen,

12:53 Speaker 4: just you need anything, just let me know, and so

12:56 Speaker 4: on and so forth, and no idea, you know how

12:59 Speaker 4: bad things were. And then probably a couple of weeks later,

13:02 Speaker 4: someone reached out and said, Charls, I know you and

13:05 Speaker 4: so and so we're good friends and she had a

13:07 Speaker 4: lot of respect for you, but you know she's.

13:10 Speaker 2: No longer here. And I was literally.

13:13 Speaker 4: Just just shook it because, like I said, she would

13:17 Speaker 4: always encourage me. She would always say nice things and

13:21 Speaker 4: reach out and send me a nice message. And you know,

13:26 Speaker 4: to hear that was.

13:27 Speaker 5: Like, especially when we know that there are options and

13:32 Speaker 5: things that can be done out there, but it's it's

13:34 Speaker 5: money that gets in the way. It's it's lack of access,

13:37 Speaker 5: denialed access the care or if you don't have enough

13:40 Speaker 5: cash to put up front, you don't get it. So

13:43 Speaker 5: you know, yeah, this isn't a serious thing to talk about.

13:47 Speaker 5: And I'm glad that you're doing a second version and

13:50 Speaker 5: you're talking about other areas of the world, because some

13:53 Speaker 5: areas of the world are dealing with this better than

13:56 Speaker 5: we are, and we could we could take a turn

13:58 Speaker 5: out of their page, you know, take page out of

14:00 Speaker 5: their book, I should say, of what they're doing to

14:03 Speaker 5: help not only protect and preserve lives and save lives,

14:06 Speaker 5: but preventative medicines that we in America really kind of

14:10 Speaker 5: stink about. When it comes to preventative medicine, we stink.

14:15 Speaker 1: Well in a in a broader in a broader sense too.

14:18 Speaker 1: In America, we just don't. Yeah, there's not enough focus

14:21 Speaker 1: on preventative anything. When it comes to health. It's it's

14:26 Speaker 1: all about, you know, waiting until you get sick and then.

14:29 Speaker 5: We have good sick care sort of, but not great preventative.

14:33 Speaker 1: Exactly, yeah, exactly, Yeah, that's and unfortunately some of that

14:36 Speaker 1: I think it's just American culture. But but yeah, but

14:42 Speaker 1: this is something in terms of CRPS. I mean, this

14:45 Speaker 1: isn't like it's not like you can just you know,

14:48 Speaker 1: as we were talking about, you know, there are treatments,

14:50 Speaker 1: but it's not like you can just go to the

14:52 Speaker 1: gym or take some vitamins. I mean, you have to

14:54 Speaker 1: be able to you have to be able to have

14:56 Speaker 1: access to to what you need, not to cure it,

14:58 Speaker 1: because there is no cure, but but to try to

15:01 Speaker 1: manage it as best you can.

15:02 Speaker 2: And yeah, and there are people who literally, I mean.

15:08 Speaker 4: Who are traveling from different parts of the world just

15:11 Speaker 4: to you know, there's some treatment out here and for

15:13 Speaker 4: the kiddymene in Florida, and literally you hear the stories

15:17 Speaker 4: it traveling from, you know, whether it's Los Angeles, New York, Canada, Europe,

15:25 Speaker 4: and some have to do this every few months just

15:28 Speaker 4: to get a little bit of relief. And it's costly.

15:32 Speaker 4: This is not this is not you know, a couple

15:35 Speaker 4: of hundred dollars. This is uh, you know, some some

15:37 Speaker 4: serious money to get on a plane, you know, and

15:40 Speaker 4: and and pay for treatment, have to stay in hotels,

15:44 Speaker 4: you know, have to rent cars on and so forth,

15:47 Speaker 4: just to get a little bit of relief for you know,

15:50 Speaker 4: three months.

15:53 Speaker 2: This is not easy.

15:54 Speaker 5: No, no, it's not.

15:56 Speaker 1: What was kind of the criteria Charles for in terms

15:59 Speaker 1: of people who you put into the film, uh to

16:02 Speaker 1: talk about this and were there some people who you

16:05 Speaker 1: spoke with who you wanted to put in it. Who

16:07 Speaker 1: maybe was there anyone who declined to be in it,

16:11 Speaker 1: because some people are, you know, as much as they

16:13 Speaker 1: might like to help and spread awareness, some people are

16:15 Speaker 1: obviously just very private about their health. So I'm curious

16:19 Speaker 1: what the criteria was and did you encounter anybody who

16:22 Speaker 1: just said, no, I'd like to help, but I don't

16:25 Speaker 1: want to be in the in the documentary.

16:28 Speaker 4: You know, I'll say this, almost everyone wants to be

16:33 Speaker 4: and wants to share their story. Yeah, because and this

16:37 Speaker 4: crosses color lines, is called crosses gender lines, as crosses everything.

16:45 Speaker 4: I mean when when you know, when dealing with this,

16:48 Speaker 4: you know, this type of pain, people just want to

16:52 Speaker 4: tell their story. I mean, we get now hundreds of

16:57 Speaker 4: messages where people are like, Charles, I just want to

17:00 Speaker 4: tell my story, please, I have a story to tell.

17:03 Speaker 4: And it's it's to the point now where it's like

17:06 Speaker 4: I'm so you know, focused on trying to raise some

17:09 Speaker 4: money to get this done that it's like listen, I've

17:12 Speaker 4: got to reply and listen I will get back to you,

17:15 Speaker 4: because you know, we have so many messages that it's

17:19 Speaker 4: and some of these messages are like very long, where

17:23 Speaker 4: you know it's going to take me a few minutes

17:25 Speaker 4: to just read through the one message. But I understand,

17:29 Speaker 4: you know, what they're dealing with. So we're going to

17:32 Speaker 4: have to get back, take a day and get back

17:34 Speaker 4: to everybody. But no, everyone wants to share. Even back

17:38 Speaker 4: then when we were shooting the film, everyone wanted to

17:41 Speaker 4: and wanted to share. And I think in many ways,

17:45 Speaker 4: because you know, like we just talked about this being

17:51 Speaker 4: called the suicide disease, that that a lot of people are.

17:55 Speaker 4: I mean, you know, you can't even me and you

17:59 Speaker 4: we don't deal with what they're dealing with. And we

18:03 Speaker 4: can't understand being in pain day and night. I mean,

18:09 Speaker 4: can you imagine stubboring your toe and and the pain

18:13 Speaker 4: of that and having that day and night, and now

18:17 Speaker 4: you take that and amplify that a hundred times where

18:22 Speaker 4: this is running through someone's body. We can't understand what

18:28 Speaker 4: that is. So I mean, when you think about that

18:32 Speaker 4: and and people are thinking about, you know, maybe taking

18:36 Speaker 4: their own life, they want to share. There's a lot

18:40 Speaker 4: of people. I just I just had a young lady

18:43 Speaker 4: a few days ago send me a message and she

18:46 Speaker 4: contacted me through WhatsApp. She said, Charles, I don't think

18:49 Speaker 4: I could do this anymore. And she's got I think

18:51 Speaker 4: two kids, and and I'm like, listen, just hang in there.

18:55 Speaker 4: And you know she's got a fiance or husband, and

18:59 Speaker 4: you know, this is wow. I you know, words can't

19:04 Speaker 4: even express what what what they're dealing with and how

19:08 Speaker 4: we need to fight for this. And then this is

19:10 Speaker 4: why I fight for it, because once you know, once again,

19:15 Speaker 4: if if if I don't, I don't know who will.

19:19 Speaker 4: Right Oh, thank god I'm able to have the resources

19:21 Speaker 4: as far as getting the message out there and putting

19:24 Speaker 4: a good story together and so on and so forth.

19:28 Speaker 4: You know, I wish it was easier, you know sometimes

19:31 Speaker 4: I you know, like I said, I'm banging my head

19:34 Speaker 4: trying to understand, you know, why it's so hard to

19:38 Speaker 4: be able to get a project like this together. But

19:41 Speaker 4: you know, I understand that this is the world we

19:43 Speaker 4: live in, and but we keep fighting and and you know,

19:47 Speaker 4: hopefully we're working on going to Italy to highlight some

19:53 Speaker 4: of the treatment that they have over there. So we've

19:56 Speaker 4: been talking to that clinic over.

19:57 Speaker 5: There, and that if administered early enough, it can halter

20:05 Speaker 5: or reverse or put into remission torps. I used to

20:11 Speaker 5: know a woman who had a fourteen year old daughter

20:13 Speaker 5: that took her to Italy for the treatment. It did

20:16 Speaker 5: work for a number of years, and then I guess

20:19 Speaker 5: it came back went back to Italy for an additional treatment.

20:23 Speaker 5: But it has to be done early, early, early, Like

20:27 Speaker 5: by the time we knew that I had CRPS, it

20:29 Speaker 5: was too late for that to work for me, and

20:32 Speaker 5: to access it here in the United States. I don't

20:35 Speaker 5: think you can. I think it's impossible. It's not even

20:38 Speaker 5: like an option for us.

20:40 Speaker 2: Yeah, I think it's only in Italy. Oh.

20:43 Speaker 5: People have mortgage with their houses to get, you know, done,

20:46 Speaker 5: anything to get their loved ones over there to try it, ye,

20:49 Speaker 5: you know, just just to have something to try. And

20:51 Speaker 5: I do want to say, I mean, this is a

20:53 Speaker 5: serious topic. It is difficult to talk about at times,

20:55 Speaker 5: but this is why you're done this documentary and why

20:58 Speaker 5: it's so important to talk about these documentaries and get

21:01 Speaker 5: that information out there. But if you are having any concerns,

21:05 Speaker 5: or you're not feeling too hot today, or you need

21:07 Speaker 5: some help, please remember you can dial nine eighty eight.

21:10 Speaker 5: Nine eight eight is the suicide and crisis Lifeline, and

21:13 Speaker 5: there are people there that can help you. So there's

21:15 Speaker 5: always a voice out there, don't forget nine eighty eight.

21:19 Speaker 3: Yeah, yeah, yeah, absolutely, And.

21:23 Speaker 4: I think too as well. Part of me, you know

21:25 Speaker 4: why I fight too as well, because you never.

21:27 Speaker 2: Know what might be around the corner, and.

21:30 Speaker 4: You want, you want folks to hang in there and

21:33 Speaker 4: hold out hope that maybe there is some treatment out

21:36 Speaker 4: there that that you know, I won't have to mortgage

21:40 Speaker 4: a house or fly across the world to get done.

21:43 Speaker 4: You know, hopefully there is something that that.

21:47 Speaker 5: Part of my hope too is with you doing this,

21:49 Speaker 5: I have hope that maybe that gets some of the

21:52 Speaker 5: people up on Capitol Hill to pay attention and approve

21:56 Speaker 5: treatments that are working for people with the RPS. But

21:59 Speaker 5: I do you want to also bring up because Charles,

22:02 Speaker 5: you've done a lot of really great advocacy work, especially

22:06 Speaker 5: in the realm of the Forever Sick, and you've also

22:08 Speaker 5: done work in highlighting diabetes and type one diabetes and

22:13 Speaker 5: type two diabetes. I know you did a documentary series

22:16 Speaker 5: on that as well, and I wanted to make sure

22:19 Speaker 5: that our listeners heard about that.

22:21 Speaker 2: Yeah.

22:22 Speaker 4: Yeah, yeah, We've done some great shows, and you know

22:25 Speaker 4: we have the first docuseries we did doctor reality series.

22:30 Speaker 2: Was called a Verse who shut in Jamaica.

22:32 Speaker 4: And featured you know, people living with diabetes. And I've

22:35 Speaker 4: done a documentary called The Diabetic You and a couple

22:40 Speaker 4: other projects on diabetes, and so it's it's been very

22:44 Speaker 4: powerful and and you know, now that I'm even talking

22:47 Speaker 4: to you, I'd love to follow up once we get

22:50 Speaker 4: off to as well, because there probably is some other

22:53 Speaker 4: things that we could be doing, whether it's starting some

22:56 Speaker 4: sort of you know, online petition where we have you know,

23:00 Speaker 4: a few thousand people signs to things that could be

23:04 Speaker 4: brought in front of some legislation or or some more

23:08 Speaker 4: awareness that maybe you could help me with and help

23:12 Speaker 4: the community get out there, so we can kind of

23:14 Speaker 4: make this more movement because we have to force the

23:19 Speaker 4: hands of these companies. We do, these pharmaceutical companies, they've

23:27 Speaker 4: got to open up their eyes and take account and

23:29 Speaker 4: at least, if nothing else, help support the people, whether

23:35 Speaker 4: it's even with treatment options.

23:38 Speaker 5: Oh exactly, look at what's happening now in our community.

23:42 Speaker 5: Lotos snow truck Zone is a medication that's working for

23:46 Speaker 5: a lot of people, what's the RPS and small fiber neuropathy,

23:49 Speaker 5: including myself. However, the pharmaceutical company that makes Nell truck

23:53 Speaker 5: Zone won't make it in the low doses that people

23:56 Speaker 5: like us need it because it's not profitable for them.

23:58 Speaker 5: They only make it in the family high dose. So

24:01 Speaker 5: all of us have to go to compounding pharmacies to

24:03 Speaker 5: get the medication, which means we're paying one hundred percent

24:06 Speaker 5: out of pocket and it's not cheap, you know, and

24:09 Speaker 5: have it made that way because insurance gets to take

24:11 Speaker 5: a walk because it's compounded. Pharmaceutical company goes not enough

24:16 Speaker 5: money in that for us, So we're not going to

24:17 Speaker 5: make it, you know, and you're you know, you're left

24:20 Speaker 5: with either you know, no money, no med or whatever

24:24 Speaker 5: you're going to do to get the med yep nop exactly.

24:27 Speaker 4: Maybe maybe we need to get a petition against or

24:31 Speaker 4: for that company, right so maybe they can open up

24:34 Speaker 4: their eyes and say what is this? Who are these

24:38 Speaker 4: people and maybe take a different look at it. I think,

24:43 Speaker 4: you know, collectively is a community while it's a rare disease.

24:47 Speaker 4: I'm sure they're I don't know how what the number

24:51 Speaker 4: is but of CRPS people. But any petition with you know,

24:55 Speaker 4: fifty sixty to seventy thousand signatures might make that company say,

25:00 Speaker 4: you know, what.

25:02 Speaker 2: We may need to.

25:03 Speaker 4: Take a look at this or at least address this

25:05 Speaker 4: in some form of fashion.

25:07 Speaker 1: Right right, exactly exactly, Charles. It is already approaching the

25:12 Speaker 1: top of the hour. We need to begin to wrap up,

25:14 Speaker 1: but before we run out of time, I want to

25:16 Speaker 1: make sure the people know where to find the documentary

25:20 Speaker 1: Trial by Fire, and also too where they should go

25:24 Speaker 1: to find your other work, your other documentaries, and anything

25:27 Speaker 1: else that you want our listeners to know about. How

25:28 Speaker 1: to keep up with everything that you're doing.

25:32 Speaker 4: Definitely, and I really appreciate this. My website is probably

25:36 Speaker 4: the best place. It's BELLA and l eMedia dot com.

25:39 Speaker 4: B L L A A and D L E E

25:44 Speaker 4: L l eMedia dot com and you can always just

25:47 Speaker 4: google my name Charles Maddox. I'm not hard to find

25:50 Speaker 4: Trial by Fire, like I said, is on YouTube right now,

25:55 Speaker 4: on my on my UH on one of my pages,

25:58 Speaker 4: the Future of Health Network. But probably will more directed

26:02 Speaker 4: toward the Amazon Prime so that we can really get

26:06 Speaker 4: people focused there. And who knows, maybe you know, with

26:11 Speaker 4: some great views on Amazon Prime, they may be interested

26:14 Speaker 4: in doing something bigger with us regarding CRPS, and so

26:19 Speaker 4: we really want to push that initiative, and and and

26:23 Speaker 4: for those who are listening, do remember that collectively, you know,

26:29 Speaker 4: as an army of people, we work better because we

26:34 Speaker 4: have to share. There there are people who are literally

26:37 Speaker 4: just now seeing try by fire after so many years.

26:41 Speaker 4: And we have to make sure that when we get

26:44 Speaker 4: this opportunity that we share, we share, we share, We

26:48 Speaker 4: ask our friends to share, We ask the friends of

26:50 Speaker 4: our friends to share. And even though at times a

26:55 Speaker 4: lot of us don't get the support that we would like,

26:58 Speaker 4: just keep pushing, just keep share and get the message

27:01 Speaker 4: out there. And I think if we work together at

27:04 Speaker 4: least we can cause some some some attention and some

27:08 Speaker 4: eyes to be put on on some things so that

27:12 Speaker 4: we can try to get some some more help and

27:14 Speaker 4: resources out there.

27:15 Speaker 1: Yeah, absolutely absolutely all right. Well, Charles Maddox, thank you

27:19 Speaker 1: so much, my friend. It's wonderful to have you back

27:21 Speaker 1: on the show. Always great to speak with you, and

27:24 Speaker 1: and we we really love and appreciate what you're doing.

27:26 Speaker 3: And uh, keep it up, man, keep it.

27:29 Speaker 2: Up, thanks so much, and have a good one.

27:32 Speaker 1: Absolutely, Charles, thank you, Take care about it all right.

27:36 Speaker 1: That was Charles Maddox, filmmaker and also a celebrity chef

27:41 Speaker 1: and actor, and he does a lot of stuff by

27:43 Speaker 1: the way he did yeah, not just you know, obviously

27:45 Speaker 1: we're focused on the documentary with with that conversation, but

27:50 Speaker 1: he's a busy guy. He's got a lot going on,

27:52 Speaker 1: so you should definitely check out everything that he's doing.

27:55 Speaker 5: Absolutely, and he and see I follow him all the

27:59 Speaker 5: time because he does home mutch in the chronic illness

28:02 Speaker 5: area and shine such a great light on it, especially

28:05 Speaker 5: with that series he did that serious he was talking

28:07 Speaker 5: about on diabetes is excellent and they talk about things

28:10 Speaker 5: that they do to you know, help stay healthier, diet

28:14 Speaker 5: and so forth. So it's it's good to have those conversations. Frankly,

28:18 Speaker 5: and Trial by Fire one hundred percent excellent movie to watch.

28:21 Speaker 5: If you haven't seen it, please see it, share it,

28:24 Speaker 5: help spread awareness. The more people that are aware and know,

28:28 Speaker 5: the more we can do to try and help them

28:29 Speaker 5: prevent people from losing their lives.

28:32 Speaker 3: Yep. Absolutely, And again.

28:33 Speaker 5: I want to just remind people if you're having a

28:35 Speaker 5: hard day or you're needing someone to talk to, please

28:37 Speaker 5: remember nine eight eight is a great number you can call.

28:41 Speaker 5: You can find help and support there and no shame.

28:45 Speaker 3: Nine eight eight yep absolutely