Speaker 1: What's wrong with God?
Speaker 2: Said Sion Dean. All the kids do day all week.
They just like to call me all.
Speaker 3: Parents mean by balancing.
Speaker 1: Why can't they be more like me? I like to
walk and don't people say that thing?
Speaker 2: Play through day crap crap, it's all the same. It
seems like y'a find no way Jamaica, k you saying
the grade tagain Hester dipster.
Speaker 1: Doing any too, your gray o headstar dipster. They don't
know real rocking.
Speaker 2: Holes midst dipster, but your little says baking small headstar dipster.
Speaker 3: When sad me do that so fact so shoot.
Speaker 1: Broad test. They probably out the school's locations.
Speaker 2: Sitting in my stove Deo Frank Cross gummy on my
phone from sil kids down dot road.
Speaker 4: Stella suth like that tousy they wesday.
Speaker 2: Could be like me.
Speaker 3: I'll kick their ass with my feet.
Speaker 2: The kids today just mucking on yuppies gummy stupid thoughts.
Speaker 4: My might just be a Nope fan.
Speaker 2: So for rocking out this one, I know, miser dipster
doing it into your ray Deo Hester dipster. They don't
know real rocking rolesister dipster, but you'll old with us
baking small, mister dipster, or send me do that so
fat so No.
Speaker 1: Listen.
Speaker 4: Music today isn't even wait by written musicians.
Speaker 5: So I'm gonna tak saying to.
Speaker 1: Me, baby, play me a solo.
Speaker 2: Answer.
Speaker 1: Did sir do your rady o star dipster? He don't
know we're walking all star dipster.
Speaker 4: Bujobs, says Bacon Slow his star dipster.
Speaker 1: Listend me don mad so fat so Shoo.
Speaker 3: This is Eleanor Langthorne from Vices Inc.
Speaker 6: And you're listening to Matt Connorton Unleashed on ninety five
point three w m n H.
Speaker 3: You're listening to w M and H three.
Speaker 4: The Commander Don't get Supreme, Lina Matzo Cobbing.
Speaker 6: Welcome everybody, here we go. It is that time again,
Matt Connorton Unleashed and we are live from the studios
of w m n H ninety five point three FM
and Glorious A bit snowy but glorious, Manchester, New Hampshire.
Today is Saturday, January eleven, twenty twenty five, and I
am not alone.
Speaker 1: Jenny Darn's best friend.
Speaker 3: Good morning Sunshine.
Speaker 6: Jenny is here at the news table and we have
an exciting show for you today, an interesting show, kind
of a little bit of an unusual lineup. Joining us
in just a few minutes via skype, we have Natalie
Moseley Quinautic. She's the author of Gage in the Invisible Illness,
One Boy's Battle with CRPS and RSD, and really looking
forward to talking with her. Actually she's written quite a
few things, very interesting background. But we'll talk with her
in a few minutes when she skypes in at nine
to fifteen. I'm not sure where in the country is
she exactly, do you know you know where she's from. Yeah,
that's sorry, Well, that's sorry. I we'll ask her. But
she's going to be skyping in. And then in the
second hour we have Flo Nicholas joining us today from
Regen Valley Tech Hub, and that will be very interesting.
I'm looking forward to speaking with her, meeting with her.
She was recommended by a friend of ours, Anthony tone Peyton,
and so yeah, so she's going to be joining us
in studio and recommendations yes. And then in the third hour,
we've got a great band coming in, Modern Fools, who
have come up in a couple of conversations on the program.
Speaker 3: They have yes, So time for them to finally come
into the studio.
Speaker 6: That's right, So really looking forward to talking with them
as well. So welcome everybody. By the way, uh, I
suppose too, we should mention while we have a moment.
You were on Status Coup.
Speaker 3: I was. I was a guest on Status Koop last Sunday.
Actually we were. Jordan was on with me for quite
a while. It was a really excellent conversation about healthcare
and what some of the struggles are that people are
facing when they're trying to get care in the great
old us of a.
Speaker 6: Yes, you've been Uh yeah, one of the guys from
Slim Volume had noticed. Oh really, i'd been remember it.
It had been No, it had been kind of following
what you've been doing. Oh yeah, as you've been making
the rounds in the media.
Speaker 3: Yeah, it's been in a few, in a.
Speaker 6: Few let's see. By the way, our friend Charles Richardson
is in the chat room and says, good morning everyone,
Good morning. I think he has brought back once again
the Charles Richardson show. Oh I did not know, yes,
And of course where he is in Florida, he's not
dealing with Well, we had a little bit of snow,
just enough to make it a nuisance. We have yet
this season to have a major storm.
Speaker 3: Atlanta, Georgia can keep the snow.
Speaker 6: Yeah, yeah, yeah, we've.
Speaker 3: Got more snow than us. It's really interesting to be
driving around Newhamshire, great sunny day, feeling like it's a
heat wave yesterday far as my opinion goes, and then
looking at the news and watching it Lana, Georgia shut
down their airport and buried. Yeah, it's kind of flipped
on its head here and they can keep it.
Speaker 6: Yeah. And also Miriam vanishes in the Facebook laugh chat
as well.
Speaker 3: My bestie's a bestiat And by the.
Speaker 6: Way, so we are back on We are fully back
on video. Some of you may have noticed last couple
of weeks this show is off only, but that has
all been fixed. So we are streaming out to Facebook
and YouTube and got the whole video component.
Speaker 3: What's that We are here there and everywhere, yes, round
the globe.
Speaker 6: I could also with the UH with re stream, the
service that I use, I could also send it out
to LinkedIn and Twitch, but I didn't even know you could.
Speaker 3: Do that now on LinkedIn, although I've not looked at
that site. But forever.
Speaker 6: But I don't do it. I don't do it with
the show. I only do it with the previews that
I do as far as LinkedIn, because of you know,
we'll run into copyright issues because we do play obviously
we play copyrighted music, so because we are licensed, we
are a radio station. But Facebook and YouTube kind of
have their own ways of dealing with that. But I
think with LinkedIn they'll just block the video entirely. And
with Twitch, I think I risk getting getting kicked off.
Speaker 3: So that's not a good idea.
Speaker 6: Yeah, I've I've tried to figure out exactly. There are
some some Twitch streamers who I guess they go live,
they'll go live with copyrighted material and they get away
with it. But then they but then they have to
take it down after and edit it or something.
Speaker 3: Well that's weird. Oh like, so when they're first okay,
I get.
Speaker 6: Like, they get away with doing it live and.
Speaker 3: Then they have to take it down or they'll get
taken off.
Speaker 6: Yeah, but I think I think Twitch will actually go
so far as to ban you if you violate their copyright.
So I'm not exactly sure. So I don't I don't
risk it, but we do send the show out now
to Facebook and uh YouTube? Uh Miriam and the Chavrama says, Uh,
my usual appointment was virtual this morning. Uh so I
didn't have to try to listen in the car on
my way home from Nashua. Oh, very good.
Speaker 3: I'm glad you've gotten to stay inside away from the snowness.
Speaker 6: Yes, yes, absolutely, people.
Speaker 3: Have a tendency to forget how to drive in it.
When we get our first good one, i'd say this
is the first good one.
Speaker 6: No, I don't know. I mean the one. We've had
a couple of instances where, like I said, where we
get just enough to make it a nuisance, but not
I try.
Speaker 3: To stay indoors when these things happen.
Speaker 6: Not anything, not anything too substantial. Uh So we should
mention too, you know, because we were talking for people
who want to learn more about We mentioned you being
on status schou your website jencoffee dot com.
Speaker 3: Yes, j E N N C O F f e
y dot com.
Speaker 6: If you want to keep track of everything Jenny is doing.
And actually, yeah, I was just gonna say, I know
there's something else coming up, but I don't think you
can talk about it yet.
Speaker 3: Negative ghost writer. That would be a big no note.
Speaker 6: Until it's already happened.
Speaker 3: But no, no, no, the future is yet written. Right,
but before our guest calls.
Speaker 6: In, the future is not yet written. Actually, what did
I say? You said the future is yet written. I
was going to say, you written. That is a no,
the future is is yet unwritten.
Speaker 3: The future is yet written, meaning it hasn't been written yet.
Speaker 6: Right, it hasn't been written yet.
Speaker 3: I can leave that word out if I want to.
Speaker 6: I don't know if you can, Yes, I can. I
don't feel like you.
Speaker 3: Can correct me. Do you know that grammarly says I
use ninety seven percent more unique words than any other user. Wow,
I get a ninety seven percent on unique words. No,
correct me. I write. I write ems terms short and sweet.
Speaker 6: To the point I was thinking to that. What was
her name? Natasha Bettingfield? She does that song Unwritten and
says the future is yet unwritten in the song.
Speaker 3: I don't care how you wered it. I didn't want to.
I said the future.
Speaker 6: I didn't say her name, right? Is it Natasha Bettingfield? Anyway?
Speaker 3: I don't know.
Speaker 6: I don't know anyway? Yes? Uh so, yeah, so the
future is yet written, as you say, don't you dare,
and then I interrupted you you're going to say something else.
Speaker 3: I was just gonna lay a foundation in the sense
before our guest calls in, she's going to be talking
about CRPS. Yes, which is something that I have and
a lot of our listeners know that, but for those
that don't know, CRPS is complex regional pain syndrome. It
is the most painful disease known to modern medicine. Medicine
uses what's called the McGill pain scale to rate pain
in the human body, from anything from a little splinter
to having a limb cut off, and when you look
at that scale, it goes up to a rating of fifty.
CRPS is at the very top, unfortunately, and that's after
labor without meds and removing a limb. So unfortunately, that
is the state of that disease. So treatment is difficult
because each patient is different. You get to find the
right combinations of medications and things. So our guest who's
calling in in just a moment here is an amazing
writer and she's written extensively about CRPS, and she's going
to talk to us about her books and why she's
trying to get this information out there for people to
be more aware. The more awareness there is, the better
it is for people who have it and also for
people to get diagnosed with it.
Speaker 6: Well in her case too, it's interesting and obviously again yeah,
we'll talk with her about it. But her son has.
Speaker 3: It, correct, it's the caregiver for eleven year.
Speaker 6: Old son Gauge.
Speaker 3: Yes, and is that here?
Speaker 6: And here we go? Hi, Natalie is that you?
Speaker 7: Good morning?
Speaker 6: Hey, good morning, welcome to the show. So we have
joining us Natalie Moseley Klinotic? Am I am I saying
the last name correctly? Clinotic?
Speaker 7: You you actually said it? Really? Well, that's it?
Speaker 3: Oh?
Speaker 6: Good good? Why do other do other people butcher it?
Speaker 3: You?
Speaker 6: You almost sound surprised?
Speaker 7: Yes, I answered anything close?
Speaker 6: Okay, very good, very good. Well, welcome to the show.
And uh really interested to learn more about this book,
Gauge and the Invisible Illness, One Boy's Battle with c
RPS and r s D. And of course, as you know,
well how did so let's hear about how how did
the two of you get connected? Because obviously Jenny, you know,
this is a subject that is very close to her
as someone with CRPS. How did the two of you
get connected?
Speaker 7: Well, I years ago. My son.
Speaker 8: When he was diagnosed, he was eleven years old. So
I joined several CRPS rooms on Facebook and started immediately
entrenching myself and trying to educate myself. So when I
decided to write this book, I reopened some of those
groups and I began posting that I was starting to
document a little bit of my son's journey, and then
I was going to do a parent guide and I
put a link in there and she found me very good.
Speaker 6: Very good. We should mention too, you've written quite a
few books. This is not This is not your first book, obviously, right.
Speaker 8: Yes, I woke up one day during COVID and decided
it was time my first book was about my childhood.
Speaker 7: My childhood, I was an abused.
Speaker 8: Child, I had not the greatest upbringing, and I decided
it was time to write about all of that, and
also the loss of my first husband.
Speaker 7: Who died while serving. Oh wow, Yeah, so a little
bit of backstory.
Speaker 8: I had an amazing after death moment with him that
I had not revealed to anyone, and I told my current.
Speaker 7: Husband, I said, I think I'm going to let the
world know. So I did that book and it was
received really well, it did really well, and then I
did another book. I did a children's book.
Speaker 8: Relating to that book, letting kids have a way to
connect to loved ones that have passed on. And then
I did the book that's kind of the follow up
to my memoir. It's called Down the rabbit Hole of Narcissism,
and that's about my parents and the adult relationship with them.
So naturally, the next book had to be about my
youngest boy. My youngest boy when he was diagnosed with CRPS.
I'm sure it's like thousands of other parents or thousands
of other people that are, you know, coming down with
this affliction. We had no idea what was happening to him.
And when I wrote the children's book, I wanted kids
to know that you can live with this illness and
find a way to live around it and with it.
And so then naturally I decided I should do a
parent companion book to that children's book, because you feel
so alone when you're dealing with that illness and you're
trying to figure it out, and I want parents to
have almost a friend via that book.
Speaker 6: I would imagine you've heard from over the course of
writing and releasing this book, I would imagine you've heard
from a lot of parents.
Speaker 3: I have.
Speaker 8: I have heard from a lot of parents, and the
feedback has been incredible. So many parents have shared my
posting on their page, shared it with other parents. Other
parents have reached out to me and messaged me and said,
it's a wonderful thing that I'm doing, because there's really
not a lot of I mean, there's medical books about CRPS,
but there's not too many where it relays the actual
event and what you're going through when you're navigating that world.
Speaker 6: Your son was eleven at the time of the diagnosis.
Is that correct?
Speaker 8: Sadly, he was only eleven. He just and again, as
this happens to so many people, because the brain's overreaction
to this injury. He was just simply knocked down in
a lunch line, went to get back up, and the
next thing he described was that his foot felt like
it was completely broken. So he took his sock off,
he took his shoe off, he went to the nurse.
The nurse said, you'll be fine. At the end of
the day, I picked him up and he was already
telling me that we needed to go to the emergency room.
Something was wrong. With his foot, and for all outward appearances,
it looked totally fine. So he started some homework and
as all kids do, it kind of sat on his
foot to get comfortable, and then the true agony began.
He said his foot was on fire. It was completely
broken inside, and that began our journey into CRPS.
Speaker 6: So leading up to that, leading up to that day,
there was no indication that there was anything.
Speaker 8: No my son played no multiple sports. He was a baseball, football,
basketball player. We literally would have to play in our
family vacation in between the sports because he was so
dedicated and so is my other son to sports and
very accelerated student, was on student council at his school,
very social, outgoing, funny little guy, accelerated classes, loved school,
super social, and then when this disease began, it totally
changed him inside out.
Speaker 6: How unusual is that for somebody that young to be
diagnosed with CRPS. That's got to be pretty unusual, right
it is.
Speaker 3: It has been rare, but yeah, yeah, exactly, there are
a lot of kids that yet that the more we learn,
the more the awareness there are, the more we're finding
out about kiddos with it. But it is a rare disease,
So yeah, I should I shouldn't say no that it
doesn't happen. But yeah, it is a rare disease. But
it strikes people of any age. It can be as
you know, even younger than gage, and it can even
and it can be somebody much older who takes a
bad spill or something happens the wrong way, or they
or they just knock themselves the wrong way and for
whatever reason, the disease starts. Okay, So I don't know
what causes it.
Speaker 6: Yeah, that's wow. So so it is it? Do they
are there any theories about it? Because obviously so obviously
it's not age related. If it can, it can happen
at any age.
Speaker 8: It's not an outside influence, you know what I mean,
Like you think, oh, maybe as an adult, oh maybe.
Speaker 7: They heard about this disease and then it kind of
got in their head. It's not. It's not something like that.
My little boy had no idea.
Speaker 8: I had never you know, really enough, as he got
more into CRPS, I began to find that there were
people afflicted with us all over and I had never
even heard about it. And there's so many physicians that
are not educated in it, and that begins the really
difficult journey of getting a diagnosis. We went to several
specialists and they just said he had a sprained ankle
or one doctor.
Speaker 7: I don't think physicians realize words hurt as well.
Speaker 8: They told our little boy that he was embellishing why
he did not have CRPS. Well before we had gone,
we told him, let the doctor do whatever he needs
to do. Please let him touch your foot if he
needs to do something, because he wouldn't let us anywhere
near his foot, and so he did. He let this
doctor play around with his foot. I would get these
looks of hate, and he was so miserable because it
is excruciating pain. And at the end of the appointment,
he goes, your son is embolishing. He doesn't have CRPS,
or he wouldn't have let me touch his foot. My son, again,
fairly smart, knew what the word embellishing meant. At that point,
we had already seen two or three physicians before this,
and he was done. He goes, I'm not going to
any more doctors. They're not going to help me. No
one believes me. And it was really really difficult. So
then you always have to have a referral for a specialist,
so you're kind of trapped in that limbo. So I
began writing specialists on my own and telling them what
was going on with my son. And then, thankfully, about
seven and a half months into him dealing with this,
we found a doctor at a hospital downtown, at Riley Hospital,
and they knew exactly what he had and I knew
all along. We took him to a pediatrist, our pediatrist
right away because it was his foot, and she goes,
I think he has CRPS. Have you ever heard of that?
And I said, sadly, I have. I have a friend,
a very distant acquaintance friend whose daughter was diagnosed a
couple of years ago, and I said, that's.
Speaker 7: What I thought too.
Speaker 8: I knew my podiatrist knew before a physician ever diagnosed
him months later.
Speaker 6: Wow, so was it? What was the timeline like, like
like from the from the time that the initial incident
happened to when it sounds like it was several months
until you had the actual officially diagnosis.
Speaker 1: Yes.
Speaker 3: You know what about that, though, is that's that's luck
because because you were so aggressive and really, and I
shouldn't say just because you were, you ended up in
the right situation that you were able to get him
diagnosed within a year. It can be ten years ten
providers before you finally get to an accurate diagnosis, especially
here in the United States where we don't have any
kind of national protocols or anything to look out for this.
Unlike the Netherlands, would they have an entire protocol and
teach their providers to look at for this in an
effort to catch it right away.
Speaker 8: Absolutely right. It incredibly lucky. And as a parent, I thought,
this is taking way too long.
Speaker 7: I didn't know what I didn't know.
Speaker 8: I didn't know anything about it, and I was like,
my little boy was no longer sleeping, he was begging
to have his foot amputated. He had no pain medication,
he had no medication whatsoever from any position that we
ever visited.
Speaker 3: Oh my god.
Speaker 7: He was dealing with this for seven and a half months.
Speaker 8: And when we found the pain scale and we would
say one to ten, where are you at gauge? You
would say, I'm a ten plus, I'm not a ten.
I'm off the charts, and no physician would listen to
him or listen to us. And again, like you're saying,
I was incredibly lucky that I found someone when I did,
and I do think that was integral in his healing
and eventually finding remission.
Speaker 3: And that's key is early diagnosis. And when I say early,
it's within that it's like get that golden e that
first year. To get treatment right away, you have a
higher percentage chance of getting into a remission when it's
ten years down the road and your UNPTEAM provider's in,
it's it's not gonna go. It's it's very rare to
go into a remission when you're that fire in before
you start treatment.
Speaker 8: Yes, And when we finally found his paying physician at
Riley Hospital, he told us if it had just been
a few months longer, you might not have had any
real hope because he told us, once you're a year in,
even with zero treatment, that it's excruciatingly hard to get
into remission or even lower pain threshold.
Speaker 3: To find that's right combo. And it's so hard for
each human to find that right combination of treatment. I mean,
you've seen how long Matt's my care provider, So he's
he's been by my side watching this treatment fail or
that treatment fail or this medication works but the insurance
decided it's not going to cover it anymore, so we
had to switch to a new medical all of that
to finally get to some kind of combination that gives
you a quality of life.
Speaker 8: Hi, And as you're describing, you don't go in and
they're like, Okay, we give you this medication. We'll do
this for you, and then you're going to be better.
Nothing is the same for every CRPS patient. They literally
throw whatever sticks and like, Okay, we're going to try this.
Maybe this will work. This work for somebody else, Let's
see what it does for you. And it's hard when
it's your child.
Speaker 3: I can't imagine adult dealing with this disease is as
difficult as it is. My heart just bleeds for a
child who has this disease. I think it's compounded so
much by their their young age.
Speaker 8: He had to grow up so quickly, he didn't get
to be a child for those three and a half years.
He was a shell of a person. He missed out
on so much. But I have to see the positive
that he did get a positive outcome, and that's what's
a blessing.
Speaker 3: He's here, he's with us. He smiles and laughs, yes, yes,
that's it there. How long did it take for him
to find that combination of treatment or what have you
that worked with that would helped him get to a
place of remission.
Speaker 8: Well, I say about three and a half years. But
once I'm not sure if you have the same But
once you have CRPS, it opens up a doorway to
so many other ailments.
Speaker 3: They come with I say, CRPS comes with friends. Yes, yes,
I have secondary hypertension caused by the CRPS. Yeah, I
have inability to control my body temperature. That's a medication. Yeah,
I mean, oh yeah, yes, I'm right there with it.
Speaker 8: He was diagnosed with hypermobility EDS, the lesser of the
EDS hypermobility, which I have since found out me and
all three of my children have hypermobility. Really, so I
became educated in that. Now I don't have any of
the negative side effects of hypermobility. But there's a little
tests you can do online, Like there's these like they're like,
you're not supposed to be able to touch your shoulders
with your palms, Well I can't. That's hyper mobility. There's
several things, and he began to go down another road.
He was pre sincope, which means he would be incredibly
dizzy and he would feel like he was going to
faint when there.
Speaker 7: Was no need to faint.
Speaker 3: Does he have pots.
Speaker 8: He doesn't have pots, full blown pots. But when we
did the tilt table study, which I requested, I had
to always ask for these tests. These doctors didn't do
any of them. Yeah, I requested the tilt table study
and that's when they found he was pre sin cope.
They barely tilted it and he started to feel like he.
Speaker 7: Was going to pass out.
Speaker 8: But that's also after he'd had some of his treatments
and he was experiencing even worse pain.
Speaker 7: Unfortunately.
Speaker 6: So is he now because you talk about a being
in remission, is he now pain free or what's his
status now?
Speaker 8: He is pain free? He says that his afflicted foot
has very little feeling in it now whatsoever.
Speaker 3: Oh, okay, and it's gonna be a big thing. That's
actually part of what makes it hard to walk. If
you can't feel the ground you're walking on.
Speaker 8: He will often have injuries to his toes or toenails
and be bleeding and he won't feel it. He won't
even know it happened. Someone has to tell him yep.
Speaker 3: So he has to be extra cautious of keeping an
eye on that foot and really looking at those toes.
It's not just the average person going wash your feet,
walk out. He's got to actually be super conscious of it.
It's super conscious of checking his skin looking for injury,
especially in a foot, because if you miss someone there,
you can set an infection and then you have multiple
problems from there. So CRPS is with him for a
lifetime to keep track of these things. But I'm so
happy that he was treated early and look what has
happened because of that. He's able to have a quality life.
And in the book talk about because writing the children's
book is different obviously than writing a book for adults,
of the things that you felt were important to include
in the book to help other kiddos who have CRPS
understand it.
Speaker 8: Well, I'm so glad you asked that. That's a wonderful question.
I never thought I would be a children's book author,
But when you have these tough topics that adults read,
you realize there's a whole world out there of children
that relate to these topics and may not have an
avenue to read about this and feel positive.
Speaker 7: So I have a wonderful editor that I work with.
Speaker 8: And she does my illustrations on my children's book, and
this book about Gauge is different illustration than my first one,
Daddy's Not Gone. She used AI this time, and she
made the images look so close to my son.
Speaker 7: It's very moving. Wow, and it's beautiful.
Speaker 8: And my whole thing is that I want my children's books,
this one especially, to be bright.
Speaker 7: I don't want it to look like a dark and negative.
Speaker 8: World, right because kids need to learn and know that
you can have a life with you. It may not
be the same one that you thought you were going
to have, but you can have a positive life. And
I really wanted it to focus on time passing because
Gage was eleven when he was diagnosed, and then he
was almost he was after thirteen when he finally found remission.
So I made sure that it was bright and it
documented going to physicians, and it's not a revenge type
of book. It's all about that you're not always helped
from the get go, and that's what CRPS is, you know. Unfortunately,
it's not like going to the doctor and having an
earache and they're like, okay, here you go.
Speaker 7: I'll help you. We had several.
Speaker 8: Positions, so I documented that a little bit, and I
also documented the fact that I mean, Gage and I
spent a lot of time together. He would be up
for forty eight hours at a stretch, and eventually I
quit my part time job because I couldn't let him
be alone all night long and struggling with pain. Because
it is called the suicide disease. I don't know how
many people talk about that.
Speaker 3: We do, but you openly talk about.
Speaker 8: It good, good, and sometimes people don't want to talk
about a tough topic.
Speaker 7: But as a mother, that worried me.
Speaker 8: He was alone a lot, and I didn't want him
to be alone and feel like he didn't have anybody
with him.
Speaker 7: So we spend a lot of time together.
Speaker 8: So I'm in the book with him and you see
his journey and you see at the end where he
begins playing baseball again and that was the beginning of
him really going into remission.
Speaker 3: Okay, that's awesome. I love that you included the fact
that you're going to see multiple doctors. Yeah, you know,
that's so huge to include that, because it's a big
difference and people don't realize it unless it happens to
them or somebody that they love. We're all used to
going to the regular guy and having I'm like you, oh, oh,
you drink too much coffee, or right, you're cholesteros too high.
Like we're used to that kind of thing, but we're
not used to You got to see this neurologists, you
got to see this pediatrist. You got to see this
person and that person, and these people are in your
life forever. The team never goes away. This is the
you know I call them. I have a team. I
have a great team. And there's many providers in there,
and each one is an expert in their aspect, and
each one plays a significant role to keeping me an
equality of life. Including that in the children's book is
so essential to let them know and to give them validation.
This is the same that you're not alone. It's not
just you. You know, here's Gauge going to the neurologist.
Here's Gauge going to the podiatrist. You know, you're that
is so essential. I think that's really great that you
included that in the book. You didn't just put in
the proverbial. Here's one dark kind of a thing that
you gave them the sense of what that world really
feels like from the inside. So maybe it's not as
scary for the next kiddo who reads your book.
Speaker 7: I appreciate it and they don't feel it.
Speaker 3: As alone, because that is a big aspect. I mean,
the number one killer for CRPS is suicide.
Speaker 7: Yes, it absolutely is.
Speaker 8: And as a parent, the moment you learn about that
and your child is eleven years old, I'm thinking, is
this what's happened? What is happening to us? What is
this really the avenue the path we're going down. It's
absolutely the path you go down. He began having uh
seeing a psychologist, which no one I knew had ever
seen a psychiatrist or a psychologist. I didn't know what
to expect. That man was incredible. His name is doctor
Eric Scott and he ended up leaving Riley Hospital a
few years after seeing Gage. But he was monumental to Gauge,
healing his mind and using distraction techniques and.
Speaker 3: Gets bud.
Speaker 7: Yes, yes, it is so huge.
Speaker 8: Yes, And he leaned into Gauge and found out what
he enjoyed in that time. He was a little boy
and he loved minecraft. So he's like, get in there
and play Minecraft and don't think about your foot because
we were, you know, we were worried he's in his
room all the time. You don't want him just staring
at a screen all day long, you know. So and
he goes let him, Let him distract himself. Tell him
he has an hour to do that, and he's got
to stand on his foot. He's got to use that foot.
Speaker 7: Make him distract himself. And my gosh, it worked. It
was incredible.
Speaker 3: Yep. I do that with my artwork macrimae painting. I
get into a bad flare or I'm having a bad moment,
I can lose myself in one of those activities. So
even if I'm having a really rougher day where I'm
staying under the blanket, I've got in my lap whatever
I'm working on, and I can work on it all
day into the night if that's what it takes. But
I'm still being I still feel like I'm productive, i
still feel like I'm doing something meaningful or what have you.
So I can totally relate to that aspect of it.
And therapist is huge. I love my therapist. I say,
keep her in my back pocket all the time because, yeah,
teaching you techniques to deal with that moment in time,
even if in that moment all you can do is box, breathe,
or look around the room and say what five things
do I see? What five things do I hear? But
in this moment, I do want to make sure that
I say, if anybody's feeling any kind of negative feelings
or you feel like you might need help, please reach
out to nine eight eight. Nine eight eight is a
suicide and crisis lifeline all across the United States, So
nine to eight eight if you are in any need whatsoever.
As these are topics to talk about, and CRPS is
not the only ailment that can make someone feel suicidal.
So I definitely want to make sure that people realize
if that if you feel a connection to this, if
it's affecting you in any way, please do call nine
eight eight. They do care and they are there to
help you. So going forward with the book with Gage,
is there a particular aspect of it that you want
to make sure that our listeners are aware of that
you feel is maybe unique or different about the children's book.
Speaker 8: The children's book, I would say the different aspect about
that book is that for me, having written it, it's
also an extension of my advocating for Gage. Oh yeah,
children don't have an adult voice. He would go to school,
his teachers didn't leave him. Advocacy is huge for a
child if you have to have a parent that is
there for you. So the children's book, again, I think
you kind of laid into it. You're not alone. I
don't want kids to feel like they're alone. Yes, you're
going to doctor after doctor, but it's because we're going
to get you better.
Speaker 7: We're going to figure this out. We're going to find
an answer that team. Yeah, yes, yes, absolutely.
Speaker 3: In addition to the book with Gage, you have a
second book that you wrote from the adult perspective on CRPS.
Speaker 8: Right yes, it's actually available for pre order for your
kindle or an ebook right now?
Speaker 6: Yes, oh very good. When is that coming out?
Speaker 7: That should be out February fifteenth.
Speaker 8: And it's basically it says the title is it hurts
So Bad and Nobody believes Me. And it's one Mom's
Guide to raising a child with CRPS or RSD. And
when I wrote that book again, it's because you feel
so alone as a parent when you're trying to navigate
this and figure it out and literal the people you're trusting.
Specialists are telling you your child's fine, he doesn't have
anything wrong with him. So not to get into being
maligned or belittled, but I do go into some of
those aspects where.
Speaker 7: I didn't know what a five four was or an IEP.
Speaker 8: I didn't know that you could have ways to help
your son at school when they're ill. So this also
teaches the parent if you're new to CRPS and you're
navigating it with the child, things I wish I had known.
Then there's these steps, and then I also go into
some of the treatments and some of the medications, and
you do have to be aware some of these medications.
Gage was on hydrocodone for years and he's taking a
dose it's meant for like an adult cancer patient. And
he was also on a drug called gabapentin, and I
lost my boy for a while to gabapentin, And if
I had known, I wish someone had told me, don't
ever put your child on gabapinn, not that it doesn't
work for others for other ailments. My child was lost
for months to gab a pitt. He had no brain reaction.
He would call his pillow a football. He was losing
nerve endings and brain cells. He was not the same
little boy anymore.
Speaker 1: Wow.
Speaker 3: And unfortunately that's like a go to drug for whatever reason.
And yes, it does work for some people, absolutely, but
I do absolutely recognize what you're saying as far as
the effect that it can have on personality, on ability
to think and to do things, and when you're dealing
with an invisible illness at the same time, that that's
just a catastrophe. Especially for him. I really do feel
frigage in the sense that he doesn't just have CRPS,
he has eds and all these other things that affect it,
and nobody can tell that when you look at him,
but it's there, and what's going on inside of his
body is very difficult to deal with. And you know,
the more that we talk about these invisible illnesses, the better.
And we actually talked about that on Status Koup. Invisible ailments,
things that people can't see by looking at you.
Speaker 8: Yes, we had a handicap placer given to us early
on by the pediatrist because she knew what he had,
she knew what we were going through, and so we
would park in these handicapped spots and I at the
very end. In the epilogue, I would lay a story
of a lady that screened at us at a store
because we were in the handicapped spot, and she.
Speaker 7: Goes, none of you look handicap, what's wrong?
Speaker 3: Oh my god? Oh? I hate that?
Speaker 7: And it happened so often.
Speaker 8: That was just the first time, and it also educated me, right,
and I would never yell at someone, But there are
those moments you would see somebody parking, You're like, what
are they?
Speaker 7: You don't know what someone is going through? Yeah, you
don't know.
Speaker 6: Yeah, And unfortunately, it's it's an element of human nature.
People like to make assumptions about other people based on
literally no information whatsoever. So you're always going to have
people who do that unfortunately. Right, if you are just
joining us, we're talking with Natalie Moseley Klinotic and talking
about the book Gauge in the Invisible Illness, One Boy's
Battle with CRPS and RSD. How many, Natalie, how many
books have you written? You've written quite a few, right.
Speaker 7: I've written a few.
Speaker 8: Yeah, I've got to see you later. A memoir of life,
Calling me from Beyond. I've Got Daddy's Knock Gone is
a children's book. And then I've got Down the rabbit
Hole of Narcissism, Life Under narc Attack, because I think
everybody has known or deals with the narcissist.
Speaker 7: They're everywhere.
Speaker 3: I need to read that one.
Speaker 8: And then I have the children's book about Gauge that's
just coming out, and then the Parent Companion Book that
should be out on the fifteenth of February.
Speaker 3: So I thought that one.
Speaker 8: That one is titled it Hurts So Bad and Nobody
Believes Me, and then it's One Mom's Guide.
Speaker 7: To Raising a Child with CRPS RSD Okay, okay, lean Eileen.
Speaker 8: Heavy into because like the monarch is heavy in CRPS fire.
So that book, the Parent Companion Book, looks like it's
on fire. It looks like flames.
Speaker 6: Oh okay, because that's.
Speaker 7: A heavy component for CRPS people.
Speaker 8: They feel like their foot or their affected appendage is
on fire.
Speaker 3: Right, right, or their whole body is if it's global
yah me right.
Speaker 6: I'm curious about what's the name of the narcissism book
you mentioned.
Speaker 8: It's called Down the rabbit Hole of Narcissism, Life Under
narc Attack.
Speaker 6: Okay.
Speaker 7: As a child, I had.
Speaker 8: An abusive childhood, and I think people think you escape
that as an adult, you're a child, you're living through that. Well,
I still had a relationship with my parents. Unfortunately, my
young husband passed away when he was twenty two and
when I was twenty one.
Speaker 6: Oh wow.
Speaker 8: And I was actually on board the ship when he
died in his accident. So that also is part of
the reason I wrote my book, the first book, See
You Later. Yeah, and so many people wanted to know, well,
what happened. I know, you're still around and you're still
dealing with your narcissist parents. And I didn't know they
were narcissists as a child obviously. Yeah, But as you
get older and you educate yourself and you find out
my parents never told me they love me. I've never
heard the words I love you from my parents. I
was never hugged as a child by my parents. Oh wow,
the effect in my home, we had none of that.
They were emotionally unavailable zero.
Speaker 1: Yeah.
Speaker 8: So as an adult that never changed. Just because my
husband died and I was raising a toddler. Now, it
didn't suddenly become this loving world with my parents. It
never It never changed. So that's hence the word down
the rabbit hole. It just continued, and it continued until
it finally stopped. So I relate a little bit of
my life and my learnings about dealing with my narcissist parents.
Speaker 6: Okay, okay, yeah, yeah, that sounds like an interesting read.
Are they still alive?
Speaker 7: They left fifteen minutes from me. Oh okay, yeah, they
lived just down the.
Speaker 8: Road, fifteen minutes. I haven't seen my mother in fourteen
years now.
Speaker 6: Yeah.
Speaker 8: She decided one day to skip my daughter's high school graduation.
And after that I found out a whole plethora of
things that had been going on behind my back via
my family for years. I had no idea how much
they truly disliked me.
Speaker 6: Oh wow.
Speaker 8: And I found out at the graduation that my parents
had now decided that they had pitted my brother against me.
So I didn't have a brother. I don't have a
brother anymore. I don't have a sibling, I don't have parents.
And they all vanished after the graduation. They stopped talking
to me. But when I began writing see you later,
my mother heard, and this is what narcissists do. She
heard that I was writing a book, and she sent
a little one sentence card.
Speaker 7: To me and said, we can begin again, if you
want and see. She wanted in. She wanted in. She
wanted to know what I was writing in that book.
Speaker 5: Right.
Speaker 8: She was super curious if I was going to out
all of our secrets, is it all going to be
out there?
Speaker 7: And it is. It is out there because it's my
life and it happened to me.
Speaker 6: I assume well done. I assume you didn't respond to
her after she sent you that.
Speaker 7: Oh she didn't like my response. Absolutely, I responded to her,
Oh you did, Okay.
Speaker 8: I'm not the same girl that I was as a child.
I had no voice as a child. I was so lonely.
I had no opinion.
Speaker 7: I wasn't even.
Speaker 8: Allowed to look how I wanted to look. I couldn't
grow my hair out. I couldn't play the instrument I
wanted to play your hair.
Speaker 3: Yes, Oh, curiously, I know this one. My hair was
so short people called me a boy.
Speaker 8: Yep, my hair was short. And I also manufactured an
image of myself. I didn't want to stand out. I
didn't want to look like anything was going.
Speaker 7: On at my home.
Speaker 8: I had to blend in so I didn't get to
have an opinion in my home.
Speaker 7: If I had an opinion.
Speaker 8: I was called stupid or shut up, or my dad
would give me the silent treatment for weeks on end,
and he was abusive and he would hurt me.
Speaker 7: And I wrote about.
Speaker 6: That in the book, Wow do you know? So did
you hear anything further from anybody in your family after
the book came out? Any feedback?
Speaker 7: Well, my mother.
Speaker 8: I didn't think she had read it, and then I thought, well,
maybe she read it, and that's why she's angry. She
began messaging my husband, and my husband said, listen, if
you really want to know your daughter's heart, you need
to read her books, because I do say in Down
the Rabbit Hole.
Speaker 7: The hardest part about all of this is that I
will probably always love my mother.
Speaker 8: We were a team for most of my childhood because
we were both being beaten up. We were both being
hurt by this man, and we were a team. And
it took me becoming an adult to realize we shouldn't
have been a team. She should have been protecting me.
Speaker 6: Yes, yes, exactly.
Speaker 8: And as I became a mother, I'm like, none of
that was okay. Why didn't she ever stop it or
help me instead of just saying, you know, oh, this
is terrible.
Speaker 7: So later my.
Speaker 8: Husband told her read the books, read them and see
how she feels. This is what happened to her. It's,
you know, just the way it is. And she never
reached back out after that. We haven't heard from her since.
Speaker 6: Okay, okay, Is that just as well from your perspective
or is there a part of you that would like, yeah,
I mean maybe you might order her to take some responsibility,
I would think, right, but that's probably not going to happen.
Speaker 8: Well, I mean, she's given hollow apologies when I said,
you've never ever even apologized for things that you allowed
to happen to me, and she's like, I did the
best I could. So that's about as good as it's
going to get. And there are some relationships I think
need to be over. They run their course. I don't
have any desire to reach out and talk to my
mother or my father or my brother. It's fine. I'm
living a great life. Everything's going really well. And the
minute they come back, it's drama.
Speaker 6: Yep.
Speaker 3: They'll make it worse, they'll take away all the joy.
Speaker 6: Yep. Yes, yes, absolutely, absolutely, Well, Natalie, this has been
a wonderful conversation. I really appreciate you joining us today,
and of course if you are just joining us, Natalie
Moseley Clinoutic, we've been speaking with. And by the way, Natalie,
where are you? Where in the country are you? Obviously
you're not up here? Where where? Whereabouts are you?
Speaker 8: I'm in central Indiana. I live in a little town
called Greenfield.
Speaker 6: Okay, okay, cool.
Speaker 3: I like them.
Speaker 6: I like the Midwest. I spent a lot of time
there as a kid when my when my parents split up.
They split up when I was really young, and my
mom moved back to Illinois, where she was from originally.
So then the arrangement was, you know, I would I
would be here with my dad during the school year,
but then I would spend the summers in Illinois. And yeah,
I like I like the Midwest quite a bit.
Speaker 1: Nice.
Speaker 7: You've got beautiful country where you are too, So that's wonderful.
Speaker 6: Oh yeah, oh absolutely, yeah.
Speaker 3: Even nice though when Atlanta takes the snow.
Speaker 7: Yeah it's terrible. There's a lot of snow here right now.
Speaker 3: No, thank you, y'all can keep it.
Speaker 7: I agree.
Speaker 6: Yeah, it's funny. You know, often people in other parts
of the country assume that we have a rough winter
here in New Hampshire, and we certainly did at one time,
but they just keep getting easier. It's uh less, you're.
Speaker 3: Up north of the mountains and that's that's different.
Speaker 8: Yeah, that's wonderful. Maybe I need to move there because
we're getting hit right now.
Speaker 6: So yeah, yeah, yeah, it's it's not too bad here.
But Natalie, before we let you go, please remind us
because you said the new book is available for pre order. Yeah,
and that and that comes out when.
Speaker 8: It comes out in hard and paperback on February fifteenth.
The pre order is now and you can find it
on Amazon or you can find it on Kindle. And
I also have a website. It's Natalie mostly clinoticbooks dot com. Okay, excellent,
you'll be able to find links to them there as well.
Speaker 6: Oh wonderful, wonderful. Well, Natalie, let's keep in touch. You know,
we definitely want to have you on, especially you know,
after the after the new book is out and uh
you know, and you start hearing some feedback on that,
you know, we'd love to have you back on. And
it's such an important subject, uh crps and and obviously
because of Jenny, it's something you know, we're not. For Jenny,
I I probably would not have known a thing about
it because it is a rare illness, and rare illnesses
don't get the attention that they deserve, obviously because of
because they're rare. And then you know, when something like
what happened to your son happens, you know, even a
lot of medical professionals you know, don't know what it is.
Speaker 3: Here's the thing. Rare illnesses are rare, but people with
rare illnesses are not. One in ten people has something
rare yep, yep, right.
Speaker 7: Right, great statistic that that's important.
Speaker 8: And I do thank you both so much for giving
a face a voice to CRPS.
Speaker 7: It needs to be everywhere.
Speaker 8: People need to know because odds are you're going to
find someone that's going to be afflicted by it or
know someone. So I really appreciate the chance to speak.
Speaker 6: About it absolutely. Natalie, thank you so much. We'll let
you go and we will we will talk you again in
the future.
Speaker 7: Thank you guys so much, great.
Speaker 6: Meaning you you got it. Thank you, take care, bye
bye bye.
Speaker 3: All right.
Speaker 6: That was Natalie Moseley Klinautic and of course the author
of Gaging the Invisible Illness One Boy's Battle with CRPS
and RST and well, yeah, we'll definitely have her on
after the new book is out.
Speaker 3: Absolutely well. And again, if you're looking for more information
on CRPS, also known as RSD, you can go to
r SDS dot org. It is a national organization that
provides a lot of information and education out there. And again,
if you or someone you care about is feeling a
need to speak to someone or having a down moment,
please die on nine to eight eight from anywhere in
the country.
Speaker 6: Now, absolutely, And if you are listening live on Saturday,
stick with us because coming up next in the second hour,
Hello Nicholas. Is she in the building? She is in
the building, so I'm looking forward to meeting her. This
will be very very interesting, so stick around. There is
plenty more to come. When I was a boy.
Speaker 1: Oh I think now this one is bejoying that I was.
Speaker 4: When I was a kid, I got my face up,
not boilets wide damn.
Speaker 2: I wasn't always a stoop and bom But when I was,
I was a jump I didn't always look can some
I used to lap and go filled man us.
Speaker 1: I remember roll the man, the times and things them
my mom.
Speaker 4: It feels like someone they shomping.
Speaker 1: Their tack, fuck off of my bar.
Speaker 2: Right do your mess side go where no scene down?
Speaker 1: No bomb?
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The bomb me roll up life.
Speaker 2: Yes.
Speaker 1: When I was in school, didn't make good grapes.
Speaker 2: I was, yes, still big numb fool.
Speaker 1: When I was still young.
Speaker 4: All I cared out proud was girls.
Speaker 1: But they didn't like my pimples.
Speaker 2: I used to be such a stool before day at
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Speaker 1: Them my am.
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Speaker 3: All of my heart.
Speaker 2: I ride, don't your nass side God have no scene down?
Speaker 1: No bob? You roll alive?
Speaker 3: Aye?
Speaker 2: Right?
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Then go outside and cut some grass. Why don't you
go kids a girl? You stupid loser?
Speaker 1: Rhyme dons I call no scene down Bob road the life?
I rhyme don as I go way have.
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