Matt Connarton Unleashed 1-11-25 hour 1

0:38 Speaker 1: What's wrong with God?

0:39 Speaker 2: Said Sion Dean. All the kids do day all week.

0:44 Speaker 2: They just like to call me all.

0:50 Speaker 3: Parents mean by balancing.

0:52 Speaker 1: Why can't they be more like me? I like to

0:57 Speaker 1: walk and don't people say that thing?

1:02 Speaker 2: Play through day crap crap, it's all the same. It

1:07 Speaker 2: seems like y'a find no way Jamaica, k you saying

1:11 Speaker 2: the grade tagain Hester dipster.

1:15 Speaker 1: Doing any too, your gray o headstar dipster. They don't

1:21 Speaker 1: know real rocking.

1:23 Speaker 2: Holes midst dipster, but your little says baking small headstar dipster.

1:32 Speaker 3: When sad me do that so fact so shoot.

1:43 Speaker 1: Broad test. They probably out the school's locations.

2:03 Speaker 2: Sitting in my stove Deo Frank Cross gummy on my

2:08 Speaker 2: phone from sil kids down dot road.

2:14 Speaker 4: Stella suth like that tousy they wesday.

2:18 Speaker 2: Could be like me.

2:20 Speaker 3: I'll kick their ass with my feet.

2:25 Speaker 2: The kids today just mucking on yuppies gummy stupid thoughts.

2:31 Speaker 4: My might just be a Nope fan.

2:33 Speaker 2: So for rocking out this one, I know, miser dipster

2:40 Speaker 2: doing it into your ray Deo Hester dipster. They don't

2:46 Speaker 2: know real rocking rolesister dipster, but you'll old with us

2:52 Speaker 2: baking small, mister dipster, or send me do that so

2:59 Speaker 2: fat so No.

3:12 Speaker 1: Listen.

3:13 Speaker 4: Music today isn't even wait by written musicians.

3:16 Speaker 5: So I'm gonna tak saying to.

3:19 Speaker 1: Me, baby, play me a solo.

3:56 Speaker 2: Answer.

3:57 Speaker 1: Did sir do your rady o star dipster? He don't

4:05 Speaker 1: know we're walking all star dipster.

4:10 Speaker 4: Bujobs, says Bacon Slow his star dipster.

4:16 Speaker 1: Listend me don mad so fat so Shoo.

4:32 Speaker 3: This is Eleanor Langthorne from Vices Inc.

4:34 Speaker 6: And you're listening to Matt Connorton Unleashed on ninety five

4:38 Speaker 6: point three w m n H.

4:40 Speaker 3: You're listening to w M and H three.

4:47 Speaker 4: The Commander Don't get Supreme, Lina Matzo Cobbing.

5:25 Speaker 6: Welcome everybody, here we go. It is that time again,

5:28 Speaker 6: Matt Connorton Unleashed and we are live from the studios

5:32 Speaker 6: of w m n H ninety five point three FM

5:35 Speaker 6: and Glorious A bit snowy but glorious, Manchester, New Hampshire.

5:40 Speaker 6: Today is Saturday, January eleven, twenty twenty five, and I

5:44 Speaker 6: am not alone.

5:52 Speaker 1: Jenny Darn's best friend.

5:55 Speaker 3: Good morning Sunshine.

5:57 Speaker 6: Jenny is here at the news table and we have

6:01 Speaker 6: an exciting show for you today, an interesting show, kind

6:05 Speaker 6: of a little bit of an unusual lineup. Joining us

6:08 Speaker 6: in just a few minutes via skype, we have Natalie

6:12 Speaker 6: Moseley Quinautic. She's the author of Gage in the Invisible Illness,

6:16 Speaker 6: One Boy's Battle with CRPS and RSD, and really looking

6:21 Speaker 6: forward to talking with her. Actually she's written quite a

6:24 Speaker 6: few things, very interesting background. But we'll talk with her

6:28 Speaker 6: in a few minutes when she skypes in at nine

6:30 Speaker 6: to fifteen. I'm not sure where in the country is

6:32 Speaker 6: she exactly, do you know you know where she's from. Yeah,

6:35 Speaker 6: that's sorry, Well, that's sorry. I we'll ask her. But

6:39 Speaker 6: she's going to be skyping in. And then in the

6:41 Speaker 6: second hour we have Flo Nicholas joining us today from

6:45 Speaker 6: Regen Valley Tech Hub, and that will be very interesting.

6:49 Speaker 6: I'm looking forward to speaking with her, meeting with her.

6:51 Speaker 6: She was recommended by a friend of ours, Anthony tone Peyton,

6:56 Speaker 6: and so yeah, so she's going to be joining us

6:59 Speaker 6: in studio and recommendations yes. And then in the third hour,

7:03 Speaker 6: we've got a great band coming in, Modern Fools, who

7:07 Speaker 6: have come up in a couple of conversations on the program.

7:10 Speaker 3: They have yes, So time for them to finally come

7:13 Speaker 3: into the studio.

7:14 Speaker 6: That's right, So really looking forward to talking with them

7:17 Speaker 6: as well. So welcome everybody. By the way, uh, I

7:22 Speaker 6: suppose too, we should mention while we have a moment.

7:25 Speaker 6: You were on Status Coup.

7:27 Speaker 3: I was. I was a guest on Status Koop last Sunday.

7:31 Speaker 3: Actually we were. Jordan was on with me for quite

7:34 Speaker 3: a while. It was a really excellent conversation about healthcare

7:38 Speaker 3: and what some of the struggles are that people are

7:40 Speaker 3: facing when they're trying to get care in the great

7:43 Speaker 3: old us of a.

7:44 Speaker 6: Yes, you've been Uh yeah, one of the guys from

7:48 Speaker 6: Slim Volume had noticed. Oh really, i'd been remember it.

7:52 Speaker 6: It had been No, it had been kind of following

7:55 Speaker 6: what you've been doing. Oh yeah, as you've been making

7:57 Speaker 6: the rounds in the media.

8:00 Speaker 3: Yeah, it's been in a few, in a.

8:04 Speaker 6: Few let's see. By the way, our friend Charles Richardson

8:07 Speaker 6: is in the chat room and says, good morning everyone,

8:09 Speaker 6: Good morning. I think he has brought back once again

8:12 Speaker 6: the Charles Richardson show. Oh I did not know, yes,

8:15 Speaker 6: And of course where he is in Florida, he's not

8:17 Speaker 6: dealing with Well, we had a little bit of snow,

8:19 Speaker 6: just enough to make it a nuisance. We have yet

8:21 Speaker 6: this season to have a major storm.

8:23 Speaker 3: Atlanta, Georgia can keep the snow.

8:25 Speaker 6: Yeah, yeah, yeah, we've.

8:26 Speaker 3: Got more snow than us. It's really interesting to be

8:29 Speaker 3: driving around Newhamshire, great sunny day, feeling like it's a

8:32 Speaker 3: heat wave yesterday far as my opinion goes, and then

8:36 Speaker 3: looking at the news and watching it Lana, Georgia shut

8:39 Speaker 3: down their airport and buried. Yeah, it's kind of flipped

8:43 Speaker 3: on its head here and they can keep it.

8:45 Speaker 6: Yeah. And also Miriam vanishes in the Facebook laugh chat

8:49 Speaker 6: as well.

8:50 Speaker 3: My bestie's a bestiat And by the.

8:52 Speaker 6: Way, so we are back on We are fully back

8:55 Speaker 6: on video. Some of you may have noticed last couple

8:58 Speaker 6: of weeks this show is off only, but that has

9:02 Speaker 6: all been fixed. So we are streaming out to Facebook

9:05 Speaker 6: and YouTube and got the whole video component.

9:09 Speaker 3: What's that We are here there and everywhere, yes, round

9:12 Speaker 3: the globe.

9:13 Speaker 6: I could also with the UH with re stream, the

9:17 Speaker 6: service that I use, I could also send it out

9:19 Speaker 6: to LinkedIn and Twitch, but I didn't even know you could.

9:23 Speaker 3: Do that now on LinkedIn, although I've not looked at

9:25 Speaker 3: that site. But forever.

9:26 Speaker 6: But I don't do it. I don't do it with

9:28 Speaker 6: the show. I only do it with the previews that

9:29 Speaker 6: I do as far as LinkedIn, because of you know,

9:32 Speaker 6: we'll run into copyright issues because we do play obviously

9:35 Speaker 6: we play copyrighted music, so because we are licensed, we

9:39 Speaker 6: are a radio station. But Facebook and YouTube kind of

9:41 Speaker 6: have their own ways of dealing with that. But I

9:43 Speaker 6: think with LinkedIn they'll just block the video entirely. And

9:46 Speaker 6: with Twitch, I think I risk getting getting kicked off.

9:50 Speaker 3: So that's not a good idea.

9:52 Speaker 6: Yeah, I've I've tried to figure out exactly. There are

9:55 Speaker 6: some some Twitch streamers who I guess they go live,

10:00 Speaker 6: they'll go live with copyrighted material and they get away

10:03 Speaker 6: with it. But then they but then they have to

10:06 Speaker 6: take it down after and edit it or something.

10:08 Speaker 3: Well that's weird. Oh like, so when they're first okay,

10:11 Speaker 3: I get.

10:12 Speaker 6: Like, they get away with doing it live and.

10:13 Speaker 3: Then they have to take it down or they'll get

10:15 Speaker 3: taken off.

10:16 Speaker 6: Yeah, but I think I think Twitch will actually go

10:19 Speaker 6: so far as to ban you if you violate their copyright.

10:22 Speaker 6: So I'm not exactly sure. So I don't I don't

10:25 Speaker 6: risk it, but we do send the show out now

10:27 Speaker 6: to Facebook and uh YouTube? Uh Miriam and the Chavrama says, Uh,

10:32 Speaker 6: my usual appointment was virtual this morning. Uh so I

10:36 Speaker 6: didn't have to try to listen in the car on

10:40 Speaker 6: my way home from Nashua. Oh, very good.

10:43 Speaker 3: I'm glad you've gotten to stay inside away from the snowness.

10:46 Speaker 6: Yes, yes, absolutely, people.

10:48 Speaker 3: Have a tendency to forget how to drive in it.

10:50 Speaker 3: When we get our first good one, i'd say this

10:51 Speaker 3: is the first good one.

10:54 Speaker 6: No, I don't know. I mean the one. We've had

10:58 Speaker 6: a couple of instances where, like I said, where we

11:00 Speaker 6: get just enough to make it a nuisance, but not

11:02 Speaker 6: I try.

11:02 Speaker 3: To stay indoors when these things happen.

11:04 Speaker 6: Not anything, not anything too substantial. Uh So we should

11:11 Speaker 6: mention too, you know, because we were talking for people

11:13 Speaker 6: who want to learn more about We mentioned you being

11:15 Speaker 6: on status schou your website jencoffee dot com.

11:18 Speaker 3: Yes, j E N N C O F f e

11:20 Speaker 3: y dot com.

11:21 Speaker 6: If you want to keep track of everything Jenny is doing.

11:24 Speaker 6: And actually, yeah, I was just gonna say, I know

11:26 Speaker 6: there's something else coming up, but I don't think you

11:28 Speaker 6: can talk about it yet.

11:29 Speaker 3: Negative ghost writer. That would be a big no note.

11:31 Speaker 6: Until it's already happened.

11:32 Speaker 3: But no, no, no, the future is yet written. Right,

11:36 Speaker 3: but before our guest calls.

11:38 Speaker 6: In, the future is not yet written. Actually, what did

11:42 Speaker 6: I say? You said the future is yet written. I

11:44 Speaker 6: was going to say, you written. That is a no,

11:47 Speaker 6: the future is is yet unwritten.

11:50 Speaker 3: The future is yet written, meaning it hasn't been written yet.

11:53 Speaker 6: Right, it hasn't been written yet.

11:54 Speaker 3: I can leave that word out if I want to.

11:56 Speaker 6: I don't know if you can, Yes, I can. I

11:58 Speaker 6: don't feel like you.

11:58 Speaker 3: Can correct me. Do you know that grammarly says I

12:01 Speaker 3: use ninety seven percent more unique words than any other user. Wow,

12:07 Speaker 3: I get a ninety seven percent on unique words. No,

12:10 Speaker 3: correct me. I write. I write ems terms short and sweet.

12:13 Speaker 6: To the point I was thinking to that. What was

12:15 Speaker 6: her name? Natasha Bettingfield? She does that song Unwritten and

12:18 Speaker 6: says the future is yet unwritten in the song.

12:21 Speaker 3: I don't care how you wered it. I didn't want to.

12:23 Speaker 3: I said the future.

12:24 Speaker 6: I didn't say her name, right? Is it Natasha Bettingfield? Anyway?

12:27 Speaker 3: I don't know.

12:28 Speaker 6: I don't know anyway? Yes? Uh so, yeah, so the

12:32 Speaker 6: future is yet written, as you say, don't you dare,

12:37 Speaker 6: and then I interrupted you you're going to say something else.

12:41 Speaker 3: I was just gonna lay a foundation in the sense

12:43 Speaker 3: before our guest calls in, she's going to be talking

12:46 Speaker 3: about CRPS. Yes, which is something that I have and

12:50 Speaker 3: a lot of our listeners know that, but for those

12:52 Speaker 3: that don't know, CRPS is complex regional pain syndrome. It

12:57 Speaker 3: is the most painful disease known to modern medicine. Medicine

13:00 Speaker 3: uses what's called the McGill pain scale to rate pain

13:04 Speaker 3: in the human body, from anything from a little splinter

13:06 Speaker 3: to having a limb cut off, and when you look

13:10 Speaker 3: at that scale, it goes up to a rating of fifty.

13:13 Speaker 3: CRPS is at the very top, unfortunately, and that's after

13:17 Speaker 3: labor without meds and removing a limb. So unfortunately, that

13:23 Speaker 3: is the state of that disease. So treatment is difficult

13:26 Speaker 3: because each patient is different. You get to find the

13:28 Speaker 3: right combinations of medications and things. So our guest who's

13:31 Speaker 3: calling in in just a moment here is an amazing

13:34 Speaker 3: writer and she's written extensively about CRPS, and she's going

13:38 Speaker 3: to talk to us about her books and why she's

13:42 Speaker 3: trying to get this information out there for people to

13:46 Speaker 3: be more aware. The more awareness there is, the better

13:50 Speaker 3: it is for people who have it and also for

13:52 Speaker 3: people to get diagnosed with it.

13:54 Speaker 6: Well in her case too, it's interesting and obviously again yeah,

13:57 Speaker 6: we'll talk with her about it. But her son has.

13:59 Speaker 3: It, correct, it's the caregiver for eleven year.

14:01 Speaker 6: Old son Gauge.

14:02 Speaker 3: Yes, and is that here?

14:05 Speaker 6: And here we go? Hi, Natalie is that you?

14:13 Speaker 7: Good morning?

14:14 Speaker 6: Hey, good morning, welcome to the show. So we have

14:18 Speaker 6: joining us Natalie Moseley Klinotic? Am I am I saying

14:22 Speaker 6: the last name correctly? Clinotic?

14:24 Speaker 7: You you actually said it? Really? Well, that's it?

14:26 Speaker 3: Oh?

14:26 Speaker 6: Good good? Why do other do other people butcher it?

14:29 Speaker 3: You?

14:29 Speaker 6: You almost sound surprised?

14:31 Speaker 7: Yes, I answered anything close?

14:33 Speaker 6: Okay, very good, very good. Well, welcome to the show.

14:38 Speaker 6: And uh really interested to learn more about this book,

14:43 Speaker 6: Gauge and the Invisible Illness, One Boy's Battle with c

14:46 Speaker 6: RPS and r s D. And of course, as you know,

14:50 Speaker 6: well how did so let's hear about how how did

14:52 Speaker 6: the two of you get connected? Because obviously Jenny, you know,

14:56 Speaker 6: this is a subject that is very close to her

15:00 Speaker 6: as someone with CRPS. How did the two of you

15:03 Speaker 6: get connected?

15:05 Speaker 7: Well, I years ago. My son.

15:08 Speaker 8: When he was diagnosed, he was eleven years old. So

15:11 Speaker 8: I joined several CRPS rooms on Facebook and started immediately

15:17 Speaker 8: entrenching myself and trying to educate myself. So when I

15:21 Speaker 8: decided to write this book, I reopened some of those

15:25 Speaker 8: groups and I began posting that I was starting to

15:29 Speaker 8: document a little bit of my son's journey, and then

15:32 Speaker 8: I was going to do a parent guide and I

15:33 Speaker 8: put a link in there and she found me very good.

15:37 Speaker 6: Very good. We should mention too, you've written quite a

15:41 Speaker 6: few books. This is not This is not your first book, obviously, right.

15:46 Speaker 8: Yes, I woke up one day during COVID and decided

15:50 Speaker 8: it was time my first book was about my childhood.

15:53 Speaker 7: My childhood, I was an abused.

15:56 Speaker 8: Child, I had not the greatest upbringing, and I decided

16:00 Speaker 8: it was time to write about all of that, and

16:03 Speaker 8: also the loss of my first husband.

16:05 Speaker 7: Who died while serving. Oh wow, Yeah, so a little

16:11 Speaker 7: bit of backstory.

16:13 Speaker 8: I had an amazing after death moment with him that

16:16 Speaker 8: I had not revealed to anyone, and I told my current.

16:19 Speaker 7: Husband, I said, I think I'm going to let the

16:21 Speaker 7: world know. So I did that book and it was

16:24 Speaker 7: received really well, it did really well, and then I

16:28 Speaker 7: did another book. I did a children's book.

16:30 Speaker 8: Relating to that book, letting kids have a way to

16:33 Speaker 8: connect to loved ones that have passed on. And then

16:37 Speaker 8: I did the book that's kind of the follow up

16:39 Speaker 8: to my memoir. It's called Down the rabbit Hole of Narcissism,

16:43 Speaker 8: and that's about my parents and the adult relationship with them.

16:47 Speaker 8: So naturally, the next book had to be about my

16:51 Speaker 8: youngest boy. My youngest boy when he was diagnosed with CRPS.

16:57 Speaker 8: I'm sure it's like thousands of other parents or thousands

17:00 Speaker 8: of other people that are, you know, coming down with

17:02 Speaker 8: this affliction. We had no idea what was happening to him.

17:07 Speaker 8: And when I wrote the children's book, I wanted kids

17:10 Speaker 8: to know that you can live with this illness and

17:14 Speaker 8: find a way to live around it and with it.

17:18 Speaker 8: And so then naturally I decided I should do a

17:20 Speaker 8: parent companion book to that children's book, because you feel

17:24 Speaker 8: so alone when you're dealing with that illness and you're

17:27 Speaker 8: trying to figure it out, and I want parents to

17:30 Speaker 8: have almost a friend via that book.

17:33 Speaker 6: I would imagine you've heard from over the course of

17:36 Speaker 6: writing and releasing this book, I would imagine you've heard

17:39 Speaker 6: from a lot of parents.

17:40 Speaker 3: I have.

17:41 Speaker 8: I have heard from a lot of parents, and the

17:44 Speaker 8: feedback has been incredible. So many parents have shared my

17:49 Speaker 8: posting on their page, shared it with other parents. Other

17:53 Speaker 8: parents have reached out to me and messaged me and said,

17:56 Speaker 8: it's a wonderful thing that I'm doing, because there's really

17:58 Speaker 8: not a lot of I mean, there's medical books about CRPS,

18:03 Speaker 8: but there's not too many where it relays the actual

18:06 Speaker 8: event and what you're going through when you're navigating that world.

18:12 Speaker 6: Your son was eleven at the time of the diagnosis.

18:16 Speaker 6: Is that correct?

18:17 Speaker 8: Sadly, he was only eleven. He just and again, as

18:21 Speaker 8: this happens to so many people, because the brain's overreaction

18:24 Speaker 8: to this injury. He was just simply knocked down in

18:27 Speaker 8: a lunch line, went to get back up, and the

18:31 Speaker 8: next thing he described was that his foot felt like

18:34 Speaker 8: it was completely broken. So he took his sock off,

18:38 Speaker 8: he took his shoe off, he went to the nurse.

18:40 Speaker 8: The nurse said, you'll be fine. At the end of

18:43 Speaker 8: the day, I picked him up and he was already

18:46 Speaker 8: telling me that we needed to go to the emergency room.

18:49 Speaker 8: Something was wrong. With his foot, and for all outward appearances,

18:53 Speaker 8: it looked totally fine. So he started some homework and

18:57 Speaker 8: as all kids do, it kind of sat on his

18:59 Speaker 8: foot to get comfortable, and then the true agony began.

19:03 Speaker 8: He said his foot was on fire. It was completely

19:06 Speaker 8: broken inside, and that began our journey into CRPS.

19:11 Speaker 6: So leading up to that, leading up to that day,

19:13 Speaker 6: there was no indication that there was anything.

19:17 Speaker 8: No my son played no multiple sports. He was a baseball, football,

19:21 Speaker 8: basketball player. We literally would have to play in our

19:24 Speaker 8: family vacation in between the sports because he was so

19:28 Speaker 8: dedicated and so is my other son to sports and

19:32 Speaker 8: very accelerated student, was on student council at his school,

19:36 Speaker 8: very social, outgoing, funny little guy, accelerated classes, loved school,

19:42 Speaker 8: super social, and then when this disease began, it totally

19:46 Speaker 8: changed him inside out.

19:49 Speaker 6: How unusual is that for somebody that young to be

19:53 Speaker 6: diagnosed with CRPS. That's got to be pretty unusual, right

19:56 Speaker 6: it is.

19:58 Speaker 3: It has been rare, but yeah, yeah, exactly, there are

20:02 Speaker 3: a lot of kids that yet that the more we learn,

20:04 Speaker 3: the more the awareness there are, the more we're finding

20:06 Speaker 3: out about kiddos with it. But it is a rare disease,

20:11 Speaker 3: So yeah, I should I shouldn't say no that it

20:14 Speaker 3: doesn't happen. But yeah, it is a rare disease. But

20:16 Speaker 3: it strikes people of any age. It can be as

20:20 Speaker 3: you know, even younger than gage, and it can even

20:23 Speaker 3: and it can be somebody much older who takes a

20:27 Speaker 3: bad spill or something happens the wrong way, or they

20:30 Speaker 3: or they just knock themselves the wrong way and for

20:32 Speaker 3: whatever reason, the disease starts. Okay, So I don't know

20:37 Speaker 3: what causes it.

20:38 Speaker 6: Yeah, that's wow. So so it is it? Do they

20:45 Speaker 6: are there any theories about it? Because obviously so obviously

20:50 Speaker 6: it's not age related. If it can, it can happen

20:52 Speaker 6: at any age.

20:55 Speaker 8: It's not an outside influence, you know what I mean,

20:57 Speaker 8: Like you think, oh, maybe as an adult, oh maybe.

20:59 Speaker 7: They heard about this disease and then it kind of

21:01 Speaker 7: got in their head. It's not. It's not something like that.

21:04 Speaker 7: My little boy had no idea.

21:06 Speaker 8: I had never you know, really enough, as he got

21:10 Speaker 8: more into CRPS, I began to find that there were

21:14 Speaker 8: people afflicted with us all over and I had never

21:17 Speaker 8: even heard about it. And there's so many physicians that

21:19 Speaker 8: are not educated in it, and that begins the really

21:22 Speaker 8: difficult journey of getting a diagnosis. We went to several

21:26 Speaker 8: specialists and they just said he had a sprained ankle

21:30 Speaker 8: or one doctor.

21:31 Speaker 7: I don't think physicians realize words hurt as well.

21:35 Speaker 8: They told our little boy that he was embellishing why

21:39 Speaker 8: he did not have CRPS. Well before we had gone,

21:42 Speaker 8: we told him, let the doctor do whatever he needs

21:44 Speaker 8: to do. Please let him touch your foot if he

21:46 Speaker 8: needs to do something, because he wouldn't let us anywhere

21:49 Speaker 8: near his foot, and so he did. He let this

21:52 Speaker 8: doctor play around with his foot. I would get these

21:54 Speaker 8: looks of hate, and he was so miserable because it

21:58 Speaker 8: is excruciating pain. And at the end of the appointment,

22:02 Speaker 8: he goes, your son is embolishing. He doesn't have CRPS,

22:05 Speaker 8: or he wouldn't have let me touch his foot. My son, again,

22:08 Speaker 8: fairly smart, knew what the word embellishing meant. At that point,

22:12 Speaker 8: we had already seen two or three physicians before this,

22:15 Speaker 8: and he was done. He goes, I'm not going to

22:17 Speaker 8: any more doctors. They're not going to help me. No

22:20 Speaker 8: one believes me. And it was really really difficult. So

22:23 Speaker 8: then you always have to have a referral for a specialist,

22:27 Speaker 8: so you're kind of trapped in that limbo. So I

22:30 Speaker 8: began writing specialists on my own and telling them what

22:33 Speaker 8: was going on with my son. And then, thankfully, about

22:36 Speaker 8: seven and a half months into him dealing with this,

22:40 Speaker 8: we found a doctor at a hospital downtown, at Riley Hospital,

22:43 Speaker 8: and they knew exactly what he had and I knew

22:46 Speaker 8: all along. We took him to a pediatrist, our pediatrist

22:51 Speaker 8: right away because it was his foot, and she goes,

22:54 Speaker 8: I think he has CRPS. Have you ever heard of that?

22:57 Speaker 8: And I said, sadly, I have. I have a friend,

22:59 Speaker 8: a very distant acquaintance friend whose daughter was diagnosed a

23:03 Speaker 8: couple of years ago, and I said, that's.

23:04 Speaker 7: What I thought too.

23:06 Speaker 8: I knew my podiatrist knew before a physician ever diagnosed

23:11 Speaker 8: him months later.

23:13 Speaker 6: Wow, so was it? What was the timeline like, like

23:17 Speaker 6: like from the from the time that the initial incident

23:20 Speaker 6: happened to when it sounds like it was several months

23:24 Speaker 6: until you had the actual officially diagnosis.

23:28 Speaker 1: Yes.

23:29 Speaker 3: You know what about that, though, is that's that's luck

23:31 Speaker 3: because because you were so aggressive and really, and I

23:36 Speaker 3: shouldn't say just because you were, you ended up in

23:38 Speaker 3: the right situation that you were able to get him

23:41 Speaker 3: diagnosed within a year. It can be ten years ten

23:44 Speaker 3: providers before you finally get to an accurate diagnosis, especially

23:48 Speaker 3: here in the United States where we don't have any

23:51 Speaker 3: kind of national protocols or anything to look out for this.

23:56 Speaker 3: Unlike the Netherlands, would they have an entire protocol and

23:58 Speaker 3: teach their providers to look at for this in an

24:01 Speaker 3: effort to catch it right away.

24:04 Speaker 8: Absolutely right. It incredibly lucky. And as a parent, I thought,

24:09 Speaker 8: this is taking way too long.

24:11 Speaker 7: I didn't know what I didn't know.

24:13 Speaker 8: I didn't know anything about it, and I was like,

24:15 Speaker 8: my little boy was no longer sleeping, he was begging

24:18 Speaker 8: to have his foot amputated. He had no pain medication,

24:22 Speaker 8: he had no medication whatsoever from any position that we

24:25 Speaker 8: ever visited.

24:26 Speaker 3: Oh my god.

24:27 Speaker 7: He was dealing with this for seven and a half months.

24:30 Speaker 8: And when we found the pain scale and we would

24:33 Speaker 8: say one to ten, where are you at gauge? You

24:34 Speaker 8: would say, I'm a ten plus, I'm not a ten.

24:37 Speaker 8: I'm off the charts, and no physician would listen to

24:40 Speaker 8: him or listen to us. And again, like you're saying,

24:44 Speaker 8: I was incredibly lucky that I found someone when I did,

24:47 Speaker 8: and I do think that was integral in his healing

24:51 Speaker 8: and eventually finding remission.

24:54 Speaker 3: And that's key is early diagnosis. And when I say early,

24:58 Speaker 3: it's within that it's like get that golden e that

25:01 Speaker 3: first year. To get treatment right away, you have a

25:04 Speaker 3: higher percentage chance of getting into a remission when it's

25:08 Speaker 3: ten years down the road and your UNPTEAM provider's in,

25:11 Speaker 3: it's it's not gonna go. It's it's very rare to

25:14 Speaker 3: go into a remission when you're that fire in before

25:16 Speaker 3: you start treatment.

25:17 Speaker 8: Yes, And when we finally found his paying physician at

25:20 Speaker 8: Riley Hospital, he told us if it had just been

25:23 Speaker 8: a few months longer, you might not have had any

25:26 Speaker 8: real hope because he told us, once you're a year in,

25:29 Speaker 8: even with zero treatment, that it's excruciatingly hard to get

25:33 Speaker 8: into remission or even lower pain threshold.

25:38 Speaker 3: To find that's right combo. And it's so hard for

25:40 Speaker 3: each human to find that right combination of treatment. I mean,

25:44 Speaker 3: you've seen how long Matt's my care provider, So he's

25:47 Speaker 3: he's been by my side watching this treatment fail or

25:50 Speaker 3: that treatment fail or this medication works but the insurance

25:53 Speaker 3: decided it's not going to cover it anymore, so we

25:55 Speaker 3: had to switch to a new medical all of that

25:57 Speaker 3: to finally get to some kind of combination that gives

25:59 Speaker 3: you a quality of life.

26:01 Speaker 8: Hi, And as you're describing, you don't go in and

26:05 Speaker 8: they're like, Okay, we give you this medication. We'll do

26:07 Speaker 8: this for you, and then you're going to be better.

26:09 Speaker 8: Nothing is the same for every CRPS patient. They literally

26:13 Speaker 8: throw whatever sticks and like, Okay, we're going to try this.

26:15 Speaker 8: Maybe this will work. This work for somebody else, Let's

26:17 Speaker 8: see what it does for you. And it's hard when

26:20 Speaker 8: it's your child.

26:21 Speaker 3: I can't imagine adult dealing with this disease is as

26:26 Speaker 3: difficult as it is. My heart just bleeds for a

26:30 Speaker 3: child who has this disease. I think it's compounded so

26:34 Speaker 3: much by their their young age.

26:37 Speaker 8: He had to grow up so quickly, he didn't get

26:39 Speaker 8: to be a child for those three and a half years.

26:42 Speaker 8: He was a shell of a person. He missed out

26:44 Speaker 8: on so much. But I have to see the positive

26:48 Speaker 8: that he did get a positive outcome, and that's what's

26:52 Speaker 8: a blessing.

26:52 Speaker 3: He's here, he's with us. He smiles and laughs, yes, yes,

26:58 Speaker 3: that's it there. How long did it take for him

27:02 Speaker 3: to find that combination of treatment or what have you

27:05 Speaker 3: that worked with that would helped him get to a

27:07 Speaker 3: place of remission.

27:09 Speaker 8: Well, I say about three and a half years. But

27:13 Speaker 8: once I'm not sure if you have the same But

27:16 Speaker 8: once you have CRPS, it opens up a doorway to

27:20 Speaker 8: so many other ailments.

27:22 Speaker 3: They come with I say, CRPS comes with friends. Yes, yes,

27:26 Speaker 3: I have secondary hypertension caused by the CRPS. Yeah, I

27:31 Speaker 3: have inability to control my body temperature. That's a medication. Yeah,

27:35 Speaker 3: I mean, oh yeah, yes, I'm right there with it.

27:38 Speaker 8: He was diagnosed with hypermobility EDS, the lesser of the

27:43 Speaker 8: EDS hypermobility, which I have since found out me and

27:47 Speaker 8: all three of my children have hypermobility. Really, so I

27:51 Speaker 8: became educated in that. Now I don't have any of

27:54 Speaker 8: the negative side effects of hypermobility. But there's a little

27:57 Speaker 8: tests you can do online, Like there's these like they're like,

28:00 Speaker 8: you're not supposed to be able to touch your shoulders

28:02 Speaker 8: with your palms, Well I can't. That's hyper mobility. There's

28:08 Speaker 8: several things, and he began to go down another road.

28:11 Speaker 8: He was pre sincope, which means he would be incredibly

28:13 Speaker 8: dizzy and he would feel like he was going to

28:15 Speaker 8: faint when there.

28:16 Speaker 7: Was no need to faint.

28:17 Speaker 3: Does he have pots.

28:19 Speaker 8: He doesn't have pots, full blown pots. But when we

28:22 Speaker 8: did the tilt table study, which I requested, I had

28:25 Speaker 8: to always ask for these tests. These doctors didn't do

28:28 Speaker 8: any of them. Yeah, I requested the tilt table study

28:31 Speaker 8: and that's when they found he was pre sin cope.

28:33 Speaker 8: They barely tilted it and he started to feel like he.

28:35 Speaker 7: Was going to pass out.

28:38 Speaker 8: But that's also after he'd had some of his treatments

28:40 Speaker 8: and he was experiencing even worse pain.

28:43 Speaker 7: Unfortunately.

28:45 Speaker 6: So is he now because you talk about a being

28:48 Speaker 6: in remission, is he now pain free or what's his

28:51 Speaker 6: status now?

28:52 Speaker 8: He is pain free? He says that his afflicted foot

28:56 Speaker 8: has very little feeling in it now whatsoever.

28:58 Speaker 3: Oh, okay, and it's gonna be a big thing. That's

29:02 Speaker 3: actually part of what makes it hard to walk. If

29:05 Speaker 3: you can't feel the ground you're walking on.

29:07 Speaker 8: He will often have injuries to his toes or toenails

29:10 Speaker 8: and be bleeding and he won't feel it. He won't

29:12 Speaker 8: even know it happened. Someone has to tell him yep.

29:15 Speaker 3: So he has to be extra cautious of keeping an

29:17 Speaker 3: eye on that foot and really looking at those toes.

29:21 Speaker 3: It's not just the average person going wash your feet,

29:23 Speaker 3: walk out. He's got to actually be super conscious of it.

29:26 Speaker 3: It's super conscious of checking his skin looking for injury,

29:29 Speaker 3: especially in a foot, because if you miss someone there,

29:33 Speaker 3: you can set an infection and then you have multiple

29:35 Speaker 3: problems from there. So CRPS is with him for a

29:39 Speaker 3: lifetime to keep track of these things. But I'm so

29:42 Speaker 3: happy that he was treated early and look what has

29:45 Speaker 3: happened because of that. He's able to have a quality life.

29:49 Speaker 3: And in the book talk about because writing the children's

29:55 Speaker 3: book is different obviously than writing a book for adults,

30:00 Speaker 3: of the things that you felt were important to include

30:02 Speaker 3: in the book to help other kiddos who have CRPS

30:05 Speaker 3: understand it.

30:07 Speaker 8: Well, I'm so glad you asked that. That's a wonderful question.

30:10 Speaker 8: I never thought I would be a children's book author,

30:13 Speaker 8: But when you have these tough topics that adults read,

30:17 Speaker 8: you realize there's a whole world out there of children

30:19 Speaker 8: that relate to these topics and may not have an

30:22 Speaker 8: avenue to read about this and feel positive.

30:26 Speaker 7: So I have a wonderful editor that I work with.

30:29 Speaker 8: And she does my illustrations on my children's book, and

30:32 Speaker 8: this book about Gauge is different illustration than my first one,

30:36 Speaker 8: Daddy's Not Gone. She used AI this time, and she

30:40 Speaker 8: made the images look so close to my son.

30:42 Speaker 7: It's very moving. Wow, and it's beautiful.

30:46 Speaker 8: And my whole thing is that I want my children's books,

30:49 Speaker 8: this one especially, to be bright.

30:51 Speaker 7: I don't want it to look like a dark and negative.

30:54 Speaker 8: World, right because kids need to learn and know that

30:58 Speaker 8: you can have a life with you. It may not

31:01 Speaker 8: be the same one that you thought you were going

31:03 Speaker 8: to have, but you can have a positive life. And

31:07 Speaker 8: I really wanted it to focus on time passing because

31:10 Speaker 8: Gage was eleven when he was diagnosed, and then he

31:13 Speaker 8: was almost he was after thirteen when he finally found remission.

31:17 Speaker 8: So I made sure that it was bright and it

31:19 Speaker 8: documented going to physicians, and it's not a revenge type

31:23 Speaker 8: of book. It's all about that you're not always helped

31:26 Speaker 8: from the get go, and that's what CRPS is, you know. Unfortunately,

31:32 Speaker 8: it's not like going to the doctor and having an

31:33 Speaker 8: earache and they're like, okay, here you go.

31:35 Speaker 7: I'll help you. We had several.

31:37 Speaker 8: Positions, so I documented that a little bit, and I

31:41 Speaker 8: also documented the fact that I mean, Gage and I

31:43 Speaker 8: spent a lot of time together. He would be up

31:47 Speaker 8: for forty eight hours at a stretch, and eventually I

31:50 Speaker 8: quit my part time job because I couldn't let him

31:53 Speaker 8: be alone all night long and struggling with pain. Because

31:56 Speaker 8: it is called the suicide disease. I don't know how

31:59 Speaker 8: many people talk about that.

32:00 Speaker 3: We do, but you openly talk about.

32:02 Speaker 8: It good, good, and sometimes people don't want to talk

32:05 Speaker 8: about a tough topic.

32:07 Speaker 7: But as a mother, that worried me.

32:09 Speaker 8: He was alone a lot, and I didn't want him

32:11 Speaker 8: to be alone and feel like he didn't have anybody

32:13 Speaker 8: with him.

32:14 Speaker 7: So we spend a lot of time together.

32:16 Speaker 8: So I'm in the book with him and you see

32:18 Speaker 8: his journey and you see at the end where he

32:21 Speaker 8: begins playing baseball again and that was the beginning of

32:24 Speaker 8: him really going into remission.

32:27 Speaker 3: Okay, that's awesome. I love that you included the fact

32:29 Speaker 3: that you're going to see multiple doctors. Yeah, you know,

32:32 Speaker 3: that's so huge to include that, because it's a big

32:37 Speaker 3: difference and people don't realize it unless it happens to

32:40 Speaker 3: them or somebody that they love. We're all used to

32:42 Speaker 3: going to the regular guy and having I'm like you, oh, oh,

32:44 Speaker 3: you drink too much coffee, or right, you're cholesteros too high.

32:47 Speaker 3: Like we're used to that kind of thing, but we're

32:49 Speaker 3: not used to You got to see this neurologists, you

32:52 Speaker 3: got to see this pediatrist. You got to see this

32:54 Speaker 3: person and that person, and these people are in your

32:56 Speaker 3: life forever. The team never goes away. This is the

33:00 Speaker 3: you know I call them. I have a team. I

33:02 Speaker 3: have a great team. And there's many providers in there,

33:06 Speaker 3: and each one is an expert in their aspect, and

33:10 Speaker 3: each one plays a significant role to keeping me an

33:13 Speaker 3: equality of life. Including that in the children's book is

33:16 Speaker 3: so essential to let them know and to give them validation.

33:20 Speaker 3: This is the same that you're not alone. It's not

33:23 Speaker 3: just you. You know, here's Gauge going to the neurologist.

33:26 Speaker 3: Here's Gauge going to the podiatrist. You know, you're that

33:30 Speaker 3: is so essential. I think that's really great that you

33:32 Speaker 3: included that in the book. You didn't just put in

33:34 Speaker 3: the proverbial. Here's one dark kind of a thing that

33:37 Speaker 3: you gave them the sense of what that world really

33:40 Speaker 3: feels like from the inside. So maybe it's not as

33:43 Speaker 3: scary for the next kiddo who reads your book.

33:46 Speaker 7: I appreciate it and they don't feel it.

33:47 Speaker 3: As alone, because that is a big aspect. I mean,

33:50 Speaker 3: the number one killer for CRPS is suicide.

33:53 Speaker 7: Yes, it absolutely is.

33:55 Speaker 8: And as a parent, the moment you learn about that

33:57 Speaker 8: and your child is eleven years old, I'm thinking, is

34:00 Speaker 8: this what's happened? What is happening to us? What is

34:03 Speaker 8: this really the avenue the path we're going down. It's

34:06 Speaker 8: absolutely the path you go down. He began having uh

34:10 Speaker 8: seeing a psychologist, which no one I knew had ever

34:13 Speaker 8: seen a psychiatrist or a psychologist. I didn't know what

34:16 Speaker 8: to expect. That man was incredible. His name is doctor

34:21 Speaker 8: Eric Scott and he ended up leaving Riley Hospital a

34:24 Speaker 8: few years after seeing Gage. But he was monumental to Gauge,

34:29 Speaker 8: healing his mind and using distraction techniques and.

34:33 Speaker 3: Gets bud.

34:36 Speaker 7: Yes, yes, it is so huge.

34:39 Speaker 8: Yes, And he leaned into Gauge and found out what

34:42 Speaker 8: he enjoyed in that time. He was a little boy

34:44 Speaker 8: and he loved minecraft. So he's like, get in there

34:47 Speaker 8: and play Minecraft and don't think about your foot because

34:50 Speaker 8: we were, you know, we were worried he's in his

34:51 Speaker 8: room all the time. You don't want him just staring

34:53 Speaker 8: at a screen all day long, you know. So and

34:56 Speaker 8: he goes let him, Let him distract himself. Tell him

35:00 Speaker 8: he has an hour to do that, and he's got

35:02 Speaker 8: to stand on his foot. He's got to use that foot.

35:04 Speaker 7: Make him distract himself. And my gosh, it worked. It

35:08 Speaker 7: was incredible.

35:09 Speaker 3: Yep. I do that with my artwork macrimae painting. I

35:14 Speaker 3: get into a bad flare or I'm having a bad moment,

35:17 Speaker 3: I can lose myself in one of those activities. So

35:19 Speaker 3: even if I'm having a really rougher day where I'm

35:21 Speaker 3: staying under the blanket, I've got in my lap whatever

35:25 Speaker 3: I'm working on, and I can work on it all

35:27 Speaker 3: day into the night if that's what it takes. But

35:29 Speaker 3: I'm still being I still feel like I'm productive, i

35:31 Speaker 3: still feel like I'm doing something meaningful or what have you.

35:35 Speaker 3: So I can totally relate to that aspect of it.

35:38 Speaker 3: And therapist is huge. I love my therapist. I say,

35:41 Speaker 3: keep her in my back pocket all the time because, yeah,

35:45 Speaker 3: teaching you techniques to deal with that moment in time,

35:48 Speaker 3: even if in that moment all you can do is box, breathe,

35:52 Speaker 3: or look around the room and say what five things

35:54 Speaker 3: do I see? What five things do I hear? But

35:57 Speaker 3: in this moment, I do want to make sure that

35:58 Speaker 3: I say, if anybody's feeling any kind of negative feelings

36:01 Speaker 3: or you feel like you might need help, please reach

36:03 Speaker 3: out to nine eight eight. Nine eight eight is a

36:06 Speaker 3: suicide and crisis lifeline all across the United States, So

36:10 Speaker 3: nine to eight eight if you are in any need whatsoever.

36:12 Speaker 3: As these are topics to talk about, and CRPS is

36:16 Speaker 3: not the only ailment that can make someone feel suicidal.

36:20 Speaker 3: So I definitely want to make sure that people realize

36:22 Speaker 3: if that if you feel a connection to this, if

36:24 Speaker 3: it's affecting you in any way, please do call nine

36:26 Speaker 3: eight eight. They do care and they are there to

36:28 Speaker 3: help you. So going forward with the book with Gage,

36:32 Speaker 3: is there a particular aspect of it that you want

36:34 Speaker 3: to make sure that our listeners are aware of that

36:37 Speaker 3: you feel is maybe unique or different about the children's book.

36:43 Speaker 8: The children's book, I would say the different aspect about

36:45 Speaker 8: that book is that for me, having written it, it's

36:49 Speaker 8: also an extension of my advocating for Gage. Oh yeah,

36:53 Speaker 8: children don't have an adult voice. He would go to school,

36:57 Speaker 8: his teachers didn't leave him. Advocacy is huge for a

37:03 Speaker 8: child if you have to have a parent that is

37:06 Speaker 8: there for you. So the children's book, again, I think

37:09 Speaker 8: you kind of laid into it. You're not alone. I

37:12 Speaker 8: don't want kids to feel like they're alone. Yes, you're

37:15 Speaker 8: going to doctor after doctor, but it's because we're going

37:18 Speaker 8: to get you better.

37:18 Speaker 7: We're going to figure this out. We're going to find

37:20 Speaker 7: an answer that team. Yeah, yes, yes, absolutely.

37:25 Speaker 3: In addition to the book with Gage, you have a

37:28 Speaker 3: second book that you wrote from the adult perspective on CRPS.

37:32 Speaker 8: Right yes, it's actually available for pre order for your

37:36 Speaker 8: kindle or an ebook right now?

37:37 Speaker 6: Yes, oh very good. When is that coming out?

37:42 Speaker 7: That should be out February fifteenth.

37:44 Speaker 8: And it's basically it says the title is it hurts

37:48 Speaker 8: So Bad and Nobody believes Me. And it's one Mom's

37:51 Speaker 8: Guide to raising a child with CRPS or RSD. And

37:55 Speaker 8: when I wrote that book again, it's because you feel

37:58 Speaker 8: so alone as a parent when you're trying to navigate

38:01 Speaker 8: this and figure it out and literal the people you're trusting.

38:05 Speaker 8: Specialists are telling you your child's fine, he doesn't have

38:08 Speaker 8: anything wrong with him. So not to get into being

38:12 Speaker 8: maligned or belittled, but I do go into some of

38:15 Speaker 8: those aspects where.

38:17 Speaker 7: I didn't know what a five four was or an IEP.

38:20 Speaker 8: I didn't know that you could have ways to help

38:23 Speaker 8: your son at school when they're ill. So this also

38:27 Speaker 8: teaches the parent if you're new to CRPS and you're

38:30 Speaker 8: navigating it with the child, things I wish I had known.

38:34 Speaker 8: Then there's these steps, and then I also go into

38:37 Speaker 8: some of the treatments and some of the medications, and

38:39 Speaker 8: you do have to be aware some of these medications.

38:42 Speaker 8: Gage was on hydrocodone for years and he's taking a

38:47 Speaker 8: dose it's meant for like an adult cancer patient. And

38:50 Speaker 8: he was also on a drug called gabapentin, and I

38:54 Speaker 8: lost my boy for a while to gabapentin, And if

38:56 Speaker 8: I had known, I wish someone had told me, don't

38:58 Speaker 8: ever put your child on gabapinn, not that it doesn't

39:01 Speaker 8: work for others for other ailments. My child was lost

39:04 Speaker 8: for months to gab a pitt. He had no brain reaction.

39:09 Speaker 8: He would call his pillow a football. He was losing

39:13 Speaker 8: nerve endings and brain cells. He was not the same

39:16 Speaker 8: little boy anymore.

39:17 Speaker 1: Wow.

39:18 Speaker 3: And unfortunately that's like a go to drug for whatever reason.

39:21 Speaker 3: And yes, it does work for some people, absolutely, but

39:24 Speaker 3: I do absolutely recognize what you're saying as far as

39:27 Speaker 3: the effect that it can have on personality, on ability

39:31 Speaker 3: to think and to do things, and when you're dealing

39:34 Speaker 3: with an invisible illness at the same time, that that's

39:37 Speaker 3: just a catastrophe. Especially for him. I really do feel

39:41 Speaker 3: frigage in the sense that he doesn't just have CRPS,

39:43 Speaker 3: he has eds and all these other things that affect it,

39:48 Speaker 3: and nobody can tell that when you look at him,

39:51 Speaker 3: but it's there, and what's going on inside of his

39:53 Speaker 3: body is very difficult to deal with. And you know,

39:58 Speaker 3: the more that we talk about these invisible illnesses, the better.

40:01 Speaker 3: And we actually talked about that on Status Koup. Invisible ailments,

40:04 Speaker 3: things that people can't see by looking at you.

40:07 Speaker 8: Yes, we had a handicap placer given to us early

40:11 Speaker 8: on by the pediatrist because she knew what he had,

40:13 Speaker 8: she knew what we were going through, and so we

40:16 Speaker 8: would park in these handicapped spots and I at the

40:18 Speaker 8: very end. In the epilogue, I would lay a story

40:21 Speaker 8: of a lady that screened at us at a store

40:23 Speaker 8: because we were in the handicapped spot, and she.

40:26 Speaker 7: Goes, none of you look handicap, what's wrong?

40:28 Speaker 3: Oh my god? Oh? I hate that?

40:31 Speaker 7: And it happened so often.

40:33 Speaker 8: That was just the first time, and it also educated me, right,

40:37 Speaker 8: and I would never yell at someone, But there are

40:39 Speaker 8: those moments you would see somebody parking, You're like, what

40:42 Speaker 8: are they?

40:43 Speaker 7: You don't know what someone is going through? Yeah, you

40:47 Speaker 7: don't know.

40:48 Speaker 6: Yeah, And unfortunately, it's it's an element of human nature.

40:52 Speaker 6: People like to make assumptions about other people based on

40:55 Speaker 6: literally no information whatsoever. So you're always going to have

40:58 Speaker 6: people who do that unfortunately. Right, if you are just

41:02 Speaker 6: joining us, we're talking with Natalie Moseley Klinotic and talking

41:07 Speaker 6: about the book Gauge in the Invisible Illness, One Boy's

41:10 Speaker 6: Battle with CRPS and RSD. How many, Natalie, how many

41:15 Speaker 6: books have you written? You've written quite a few, right.

41:18 Speaker 7: I've written a few.

41:19 Speaker 8: Yeah, I've got to see you later. A memoir of life,

41:22 Speaker 8: Calling me from Beyond. I've Got Daddy's Knock Gone is

41:25 Speaker 8: a children's book. And then I've got Down the rabbit

41:28 Speaker 8: Hole of Narcissism, Life Under narc Attack, because I think

41:31 Speaker 8: everybody has known or deals with the narcissist.

41:33 Speaker 7: They're everywhere.

41:34 Speaker 3: I need to read that one.

41:36 Speaker 8: And then I have the children's book about Gauge that's

41:39 Speaker 8: just coming out, and then the Parent Companion Book that

41:42 Speaker 8: should be out on the fifteenth of February.

41:44 Speaker 3: So I thought that one.

41:47 Speaker 8: That one is titled it Hurts So Bad and Nobody

41:50 Speaker 8: Believes Me, and then it's One Mom's Guide.

41:52 Speaker 7: To Raising a Child with CRPS RSD Okay, okay, lean Eileen.

41:59 Speaker 8: Heavy into because like the monarch is heavy in CRPS fire.

42:05 Speaker 8: So that book, the Parent Companion Book, looks like it's

42:07 Speaker 8: on fire. It looks like flames.

42:09 Speaker 6: Oh okay, because that's.

42:11 Speaker 7: A heavy component for CRPS people.

42:13 Speaker 8: They feel like their foot or their affected appendage is

42:16 Speaker 8: on fire.

42:17 Speaker 3: Right, right, or their whole body is if it's global

42:20 Speaker 3: yah me right.

42:24 Speaker 6: I'm curious about what's the name of the narcissism book

42:27 Speaker 6: you mentioned.

42:28 Speaker 8: It's called Down the rabbit Hole of Narcissism, Life Under

42:31 Speaker 8: narc Attack.

42:32 Speaker 6: Okay.

42:34 Speaker 7: As a child, I had.

42:35 Speaker 8: An abusive childhood, and I think people think you escape

42:41 Speaker 8: that as an adult, you're a child, you're living through that. Well,

42:44 Speaker 8: I still had a relationship with my parents. Unfortunately, my

42:47 Speaker 8: young husband passed away when he was twenty two and

42:49 Speaker 8: when I was twenty one.

42:51 Speaker 6: Oh wow.

42:52 Speaker 8: And I was actually on board the ship when he

42:54 Speaker 8: died in his accident. So that also is part of

42:57 Speaker 8: the reason I wrote my book, the first book, See

42:59 Speaker 8: You Later. Yeah, and so many people wanted to know, well,

43:03 Speaker 8: what happened. I know, you're still around and you're still

43:06 Speaker 8: dealing with your narcissist parents. And I didn't know they

43:08 Speaker 8: were narcissists as a child obviously. Yeah, But as you

43:12 Speaker 8: get older and you educate yourself and you find out

43:16 Speaker 8: my parents never told me they love me. I've never

43:18 Speaker 8: heard the words I love you from my parents. I

43:20 Speaker 8: was never hugged as a child by my parents. Oh wow,

43:22 Speaker 8: the effect in my home, we had none of that.

43:25 Speaker 8: They were emotionally unavailable zero.

43:28 Speaker 1: Yeah.

43:29 Speaker 8: So as an adult that never changed. Just because my

43:33 Speaker 8: husband died and I was raising a toddler. Now, it

43:36 Speaker 8: didn't suddenly become this loving world with my parents. It

43:39 Speaker 8: never It never changed. So that's hence the word down

43:42 Speaker 8: the rabbit hole. It just continued, and it continued until

43:46 Speaker 8: it finally stopped. So I relate a little bit of

43:49 Speaker 8: my life and my learnings about dealing with my narcissist parents.

43:53 Speaker 6: Okay, okay, yeah, yeah, that sounds like an interesting read.

44:00 Speaker 6: Are they still alive?

44:04 Speaker 7: They left fifteen minutes from me. Oh okay, yeah, they

44:07 Speaker 7: lived just down the.

44:08 Speaker 8: Road, fifteen minutes. I haven't seen my mother in fourteen

44:11 Speaker 8: years now.

44:12 Speaker 6: Yeah.

44:13 Speaker 8: She decided one day to skip my daughter's high school graduation.

44:17 Speaker 8: And after that I found out a whole plethora of

44:21 Speaker 8: things that had been going on behind my back via

44:24 Speaker 8: my family for years. I had no idea how much

44:28 Speaker 8: they truly disliked me.

44:29 Speaker 6: Oh wow.

44:30 Speaker 8: And I found out at the graduation that my parents

44:34 Speaker 8: had now decided that they had pitted my brother against me.

44:38 Speaker 8: So I didn't have a brother. I don't have a

44:39 Speaker 8: brother anymore. I don't have a sibling, I don't have parents.

44:42 Speaker 8: And they all vanished after the graduation. They stopped talking

44:46 Speaker 8: to me. But when I began writing see you later,

44:50 Speaker 8: my mother heard, and this is what narcissists do. She

44:53 Speaker 8: heard that I was writing a book, and she sent

44:55 Speaker 8: a little one sentence card.

44:57 Speaker 7: To me and said, we can begin again, if you

44:59 Speaker 7: want and see. She wanted in. She wanted in. She

45:04 Speaker 7: wanted to know what I was writing in that book.

45:06 Speaker 5: Right.

45:06 Speaker 8: She was super curious if I was going to out

45:08 Speaker 8: all of our secrets, is it all going to be

45:11 Speaker 8: out there?

45:11 Speaker 7: And it is. It is out there because it's my

45:14 Speaker 7: life and it happened to me.

45:16 Speaker 6: I assume well done. I assume you didn't respond to

45:19 Speaker 6: her after she sent you that.

45:20 Speaker 7: Oh she didn't like my response. Absolutely, I responded to her,

45:23 Speaker 7: Oh you did, Okay.

45:26 Speaker 8: I'm not the same girl that I was as a child.

45:29 Speaker 8: I had no voice as a child. I was so lonely.

45:32 Speaker 8: I had no opinion.

45:34 Speaker 7: I wasn't even.

45:34 Speaker 8: Allowed to look how I wanted to look. I couldn't

45:37 Speaker 8: grow my hair out. I couldn't play the instrument I

45:40 Speaker 8: wanted to play your hair.

45:43 Speaker 3: Yes, Oh, curiously, I know this one. My hair was

45:46 Speaker 3: so short people called me a boy.

45:48 Speaker 8: Yep, my hair was short. And I also manufactured an

45:52 Speaker 8: image of myself. I didn't want to stand out. I

45:55 Speaker 8: didn't want to look like anything was going.

45:57 Speaker 7: On at my home.

45:58 Speaker 8: I had to blend in so I didn't get to

46:01 Speaker 8: have an opinion in my home.

46:03 Speaker 7: If I had an opinion.

46:04 Speaker 8: I was called stupid or shut up, or my dad

46:07 Speaker 8: would give me the silent treatment for weeks on end,

46:10 Speaker 8: and he was abusive and he would hurt me.

46:12 Speaker 7: And I wrote about.

46:13 Speaker 6: That in the book, Wow do you know? So did

46:16 Speaker 6: you hear anything further from anybody in your family after

46:19 Speaker 6: the book came out? Any feedback?

46:23 Speaker 7: Well, my mother.

46:25 Speaker 8: I didn't think she had read it, and then I thought, well,

46:28 Speaker 8: maybe she read it, and that's why she's angry. She

46:31 Speaker 8: began messaging my husband, and my husband said, listen, if

46:34 Speaker 8: you really want to know your daughter's heart, you need

46:36 Speaker 8: to read her books, because I do say in Down

46:39 Speaker 8: the Rabbit Hole.

46:40 Speaker 7: The hardest part about all of this is that I

46:42 Speaker 7: will probably always love my mother.

46:45 Speaker 8: We were a team for most of my childhood because

46:48 Speaker 8: we were both being beaten up. We were both being

46:50 Speaker 8: hurt by this man, and we were a team. And

46:53 Speaker 8: it took me becoming an adult to realize we shouldn't

46:56 Speaker 8: have been a team. She should have been protecting me.

46:57 Speaker 6: Yes, yes, exactly.

47:00 Speaker 8: And as I became a mother, I'm like, none of

47:02 Speaker 8: that was okay. Why didn't she ever stop it or

47:05 Speaker 8: help me instead of just saying, you know, oh, this

47:07 Speaker 8: is terrible.

47:09 Speaker 7: So later my.

47:10 Speaker 8: Husband told her read the books, read them and see

47:14 Speaker 8: how she feels. This is what happened to her. It's,

47:16 Speaker 8: you know, just the way it is. And she never

47:19 Speaker 8: reached back out after that. We haven't heard from her since.

47:22 Speaker 6: Okay, okay, Is that just as well from your perspective

47:28 Speaker 6: or is there a part of you that would like, yeah,

47:31 Speaker 6: I mean maybe you might order her to take some responsibility,

47:34 Speaker 6: I would think, right, but that's probably not going to happen.

47:37 Speaker 8: Well, I mean, she's given hollow apologies when I said,

47:40 Speaker 8: you've never ever even apologized for things that you allowed

47:44 Speaker 8: to happen to me, and she's like, I did the

47:45 Speaker 8: best I could. So that's about as good as it's

47:49 Speaker 8: going to get. And there are some relationships I think

47:52 Speaker 8: need to be over. They run their course. I don't

47:55 Speaker 8: have any desire to reach out and talk to my

47:59 Speaker 8: mother or my father or my brother. It's fine. I'm

48:02 Speaker 8: living a great life. Everything's going really well. And the

48:05 Speaker 8: minute they come back, it's drama.

48:07 Speaker 6: Yep.

48:08 Speaker 3: They'll make it worse, they'll take away all the joy.

48:11 Speaker 6: Yep. Yes, yes, absolutely, absolutely, Well, Natalie, this has been

48:16 Speaker 6: a wonderful conversation. I really appreciate you joining us today,

48:20 Speaker 6: and of course if you are just joining us, Natalie

48:23 Speaker 6: Moseley Clinoutic, we've been speaking with. And by the way, Natalie,

48:27 Speaker 6: where are you? Where in the country are you? Obviously

48:29 Speaker 6: you're not up here? Where where? Whereabouts are you?

48:33 Speaker 8: I'm in central Indiana. I live in a little town

48:35 Speaker 8: called Greenfield.

48:36 Speaker 6: Okay, okay, cool.

48:38 Speaker 3: I like them.

48:38 Speaker 6: I like the Midwest. I spent a lot of time

48:41 Speaker 6: there as a kid when my when my parents split up.

48:44 Speaker 6: They split up when I was really young, and my

48:45 Speaker 6: mom moved back to Illinois, where she was from originally.

48:49 Speaker 6: So then the arrangement was, you know, I would I

48:51 Speaker 6: would be here with my dad during the school year,

48:53 Speaker 6: but then I would spend the summers in Illinois. And yeah,

48:56 Speaker 6: I like I like the Midwest quite a bit.

48:59 Speaker 1: Nice.

48:59 Speaker 7: You've got beautiful country where you are too, So that's wonderful.

49:02 Speaker 6: Oh yeah, oh absolutely, yeah.

49:04 Speaker 3: Even nice though when Atlanta takes the snow.

49:08 Speaker 7: Yeah it's terrible. There's a lot of snow here right now.

49:12 Speaker 3: No, thank you, y'all can keep it.

49:15 Speaker 7: I agree.

49:16 Speaker 6: Yeah, it's funny. You know, often people in other parts

49:19 Speaker 6: of the country assume that we have a rough winter

49:21 Speaker 6: here in New Hampshire, and we certainly did at one time,

49:24 Speaker 6: but they just keep getting easier. It's uh less, you're.

49:27 Speaker 3: Up north of the mountains and that's that's different.

49:30 Speaker 8: Yeah, that's wonderful. Maybe I need to move there because

49:33 Speaker 8: we're getting hit right now.

49:34 Speaker 6: So yeah, yeah, yeah, it's it's not too bad here.

49:37 Speaker 6: But Natalie, before we let you go, please remind us

49:41 Speaker 6: because you said the new book is available for pre order. Yeah,

49:45 Speaker 6: and that and that comes out when.

49:48 Speaker 8: It comes out in hard and paperback on February fifteenth.

49:52 Speaker 8: The pre order is now and you can find it

49:54 Speaker 8: on Amazon or you can find it on Kindle. And

49:57 Speaker 8: I also have a website. It's Natalie mostly clinoticbooks dot com. Okay, excellent,

50:04 Speaker 8: you'll be able to find links to them there as well.

50:06 Speaker 6: Oh wonderful, wonderful. Well, Natalie, let's keep in touch. You know,

50:10 Speaker 6: we definitely want to have you on, especially you know,

50:13 Speaker 6: after the after the new book is out and uh

50:15 Speaker 6: you know, and you start hearing some feedback on that,

50:18 Speaker 6: you know, we'd love to have you back on. And

50:20 Speaker 6: it's such an important subject, uh crps and and obviously

50:23 Speaker 6: because of Jenny, it's something you know, we're not. For Jenny,

50:26 Speaker 6: I I probably would not have known a thing about

50:29 Speaker 6: it because it is a rare illness, and rare illnesses

50:34 Speaker 6: don't get the attention that they deserve, obviously because of

50:37 Speaker 6: because they're rare. And then you know, when something like

50:40 Speaker 6: what happened to your son happens, you know, even a

50:43 Speaker 6: lot of medical professionals you know, don't know what it is.

50:46 Speaker 3: Here's the thing. Rare illnesses are rare, but people with

50:49 Speaker 3: rare illnesses are not. One in ten people has something

50:53 Speaker 3: rare yep, yep, right.

50:54 Speaker 7: Right, great statistic that that's important.

50:57 Speaker 8: And I do thank you both so much for giving

50:59 Speaker 8: a face a voice to CRPS.

51:02 Speaker 7: It needs to be everywhere.

51:04 Speaker 8: People need to know because odds are you're going to

51:06 Speaker 8: find someone that's going to be afflicted by it or

51:08 Speaker 8: know someone. So I really appreciate the chance to speak.

51:11 Speaker 6: About it absolutely. Natalie, thank you so much. We'll let

51:14 Speaker 6: you go and we will we will talk you again in

51:17 Speaker 6: the future.

51:18 Speaker 7: Thank you guys so much, great.

51:19 Speaker 6: Meaning you you got it. Thank you, take care, bye

51:21 Speaker 6: bye bye.

51:24 Speaker 3: All right.

51:24 Speaker 6: That was Natalie Moseley Klinautic and of course the author

51:27 Speaker 6: of Gaging the Invisible Illness One Boy's Battle with CRPS

51:31 Speaker 6: and RST and well, yeah, we'll definitely have her on

51:34 Speaker 6: after the new book is out.

51:35 Speaker 3: Absolutely well. And again, if you're looking for more information

51:38 Speaker 3: on CRPS, also known as RSD, you can go to

51:42 Speaker 3: r SDS dot org. It is a national organization that

51:46 Speaker 3: provides a lot of information and education out there. And again,

51:48 Speaker 3: if you or someone you care about is feeling a

51:51 Speaker 3: need to speak to someone or having a down moment,

51:54 Speaker 3: please die on nine to eight eight from anywhere in

51:56 Speaker 3: the country.

51:58 Speaker 6: Now, absolutely, And if you are listening live on Saturday,

52:02 Speaker 6: stick with us because coming up next in the second hour,

52:05 Speaker 6: Hello Nicholas. Is she in the building? She is in

52:07 Speaker 6: the building, so I'm looking forward to meeting her. This

52:09 Speaker 6: will be very very interesting, so stick around. There is

52:12 Speaker 6: plenty more to come. When I was a boy.

52:50 Speaker 1: Oh I think now this one is bejoying that I was.

52:55 Speaker 4: When I was a kid, I got my face up,

53:00 Speaker 4: not boilets wide damn.

53:04 Speaker 2: I wasn't always a stoop and bom But when I was,

53:09 Speaker 2: I was a jump I didn't always look can some

53:15 Speaker 2: I used to lap and go filled man us.

53:21 Speaker 1: I remember roll the man, the times and things them

53:25 Speaker 1: my mom.

53:28 Speaker 4: It feels like someone they shomping.

53:31 Speaker 1: Their tack, fuck off of my bar.

53:37 Speaker 2: Right do your mess side go where no scene down?

53:42 Speaker 1: No bomb?

53:42 Speaker 2: Me roll up live?

53:44 Speaker 3: I ride you miss side go where no scene down?

53:50 Speaker 3: The bomb me roll up life.

54:00 Speaker 2: Yes.

54:08 Speaker 1: When I was in school, didn't make good grapes.

54:13 Speaker 2: I was, yes, still big numb fool.

54:16 Speaker 1: When I was still young.

54:19 Speaker 4: All I cared out proud was girls.

54:22 Speaker 1: But they didn't like my pimples.

54:25 Speaker 2: I used to be such a stool before day at

54:30 Speaker 2: night crying on the floor.

54:33 Speaker 4: They used to wear fans read.

54:36 Speaker 2: Me of my milk money taking. When I was growing up,

54:42 Speaker 2: I remember the bad times and picking.

54:46 Speaker 1: Them my am.

54:50 Speaker 2: It feels like someone is shoving the same like.

54:54 Speaker 3: All of my heart.

54:58 Speaker 2: I ride, don't your nass side God have no scene down?

55:03 Speaker 1: No bob? You roll alive?

55:06 Speaker 3: Aye?

55:06 Speaker 2: Right?

55:07 Speaker 1: Do you assie go w no scene down? Noboby?

55:12 Speaker 3: Roll up live.

55:30 Speaker 1: You know.

55:31 Speaker 4: When I was a boy, my father used to look

55:34 Speaker 4: down at me and say, what god hell is even?

55:38 Speaker 4: Then go outside and cut some grass. Why don't you

55:42 Speaker 4: go kids a girl? You stupid loser?

56:20 Speaker 1: Rhyme dons I call no scene down Bob road the life?

56:27 Speaker 1: I rhyme don as I go way have.

56:31 Speaker 3: No scene down the Bobby Road life.

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