Okay, welcome to the show Barbie. Thank you so much for taking

the time to talk with us today. How are you?

What is going well?

I am doing good. I'm excited to be here and

What's going well is I'm preparing for our biggest

awareness month of the year, which is in November and

I pretty much prepare all

year round for that one month of activities. Well, I'm

doing other activities, but I'm really excited to be seeing

it all come together and and ready

to present it to the world.

Wonderful. Well as an introduction, can you just let us

know who you are and what it is that you do, please absolutely. I

am a best-selling author on chronic

pain topics and I've published nine

books and I am also serving as the president of

the International Pain foundation and I am currently

a beauty pageant title holder Mrs. Southwest

petite. So I have quite a

variety of things that I'm involved in but everything revolves

around living with chronic and rare

diseases for myself.

All right. Well, I just want to jump straight in and talk

about chronic pain. It's obviously a big topic and I'm not

sure if people who don't have chronic pain can really understand what chronic

pain is. They can probably understand what pain is but chronic constant

your pain like, you know, it sounds awful but

you know, so I'd love to talk about about more about that. So

for those who haven't really experiences experience that

who can't really relate what has been what's been

your experience with chronic pain. What's that been? Like it's

been very challenging and it

is something chronic and applies Everlasting

it goes on and on and I first

was dealing with chronic pain at the

age of 26 with endometriosis and I went through

treatments and surgery and thought I

conquered the world. I'm ready to take on

the world and then I developed the rare disease reflex sympathetic

dystrophy, and that was a whole new level

of pain a different kind of pain if you've

not exper.

Chronic pain it say you've had something acute. Just imagine

not that not being able to stop or

go away. Like I've sprained an ankle before that's nothing

compared to chronic pain.

Because that ankle will heal and then you get better when you

have a disease and there's thousands of diseases that

involve chronic pain. If you have a

disease that involves chronic pain, it's just never ending

and so learning how to navigate the system is the

hard part and nobody teaches us nobody taught me how to

get through that. So it really changed

every single aspect of my life and basically

overtook my

life and my job became getting the best care I could

and finding the right care for me and finding the right

medical providers for me and my whole focus

in life changed.

What was your experience with the medical system with with a rare

condition and chronic pain?

it absolutely was very

difficult to get a

diagnetic to get a proper diagnosis. So the first 42 I

learned each of them was looking at an individual part

of me and who I was and they

weren't looking at the whole me that was presenting

in front of them. But I also learned I wasn't speaking

their language so they weren't able to help

me because I didn't know what to say or how to get through that doctor

appointment or doctor appointments and

that 43rd doctor was the first one to stop he

asked for all of my other medical records for

all the visits. I had gone to before him and he

looked over all of that for a couple of weeks and

then I went in for my appointment and he had a

better understanding of what was going on and how it was all involved and

and was able to put me

on the right path to get the right diagnosis and then

it still even though I got that proper diagnosis

after three years and 42 other doctors.

he still was not able to treat me effectively because

it's a rare disease and

there's about 7,000 rare diseases about 5% of

them have a treatment and most of

them are not known so he was

able to diagnose me, but he wasn't able to fully treat

me and it took another four years to get proper treatment.

For the rare disease, so it was quite

the challenge and on average somebody sees about

eight doctors with the rare disease before

they get diagnosed for me. It was a you know

42.

Got it wrong before the right doctor saw my records

and got it right wow, say like so those first

42 doctors beforehand. What did they do that? The 43rd

didn't was it just like you were going into seeing new

doctor and then they were just treat you the same every time

like very like quickly listen to your symptoms and that

that was kind of it and then they came up to no

conclusion like that happened 42 times. Yeah, or

they came up to the wrong conclusion. They would if it

was a long doctor they would concentrate on what my lungs

were doing. If it was a heart doctor they would just look

at my heart ear nose and throat doctor was was

I was saying I'm having trouble swallowing.

Well, it turns out that the small nerves weren't firing in my

throat. And so I was choking on food no matter how good I

chewed the food. I was still choking. They were looking at

each individual symptom that was happening in their

own area of expertise. So they

didn't go outside of that and and

I even had one was a neurologist. He said I

think what's wrong is you have large boobs and

you need to have a breast reduction and if you get a

breast reduction, it will fix everything that's wrong with you and that

was absolutely wrong. But that was the 42nd doctor.

And that I went to it was a plastic surgeon to have my boobs removed

because I was gonna do anything they could offer me

to try to help me even though they were

only looking at specific parts of me and I wasn't helping him.

Like I said, I was just going in crying and saying fix

me help me.

And I wasn't giving them adjectives. They need adjectives to

describe the type of pain you're having

they need to know what's there's other systems that are

involved. It may seem bizarre and like it's not interconnected. But

for me all the different systems of my body with

this rare disease are interconnected and

I would have gotten help I think sooner. If I as a

patient went in with adjectives to describe the

pain. I was feeling in the symptoms. I was going through as well

as explained more to them.

If you know if they said I'm just a long doctor. I don't need to

know about the rest. They actually did need to know about the rest.

What would you do differently now, you've

obviously had all of that experience like going into those going into

those doctors appointments. Obviously, this could be advice for somebody who's also,

you know, struggling with the lights on self-investigation

trying to find a diagnosis or just some answers or

being Point pointed in the right direction. What advice

would you give to people who are also like

really struggling to kind of crack through and find the right right doctor

for them. That's gonna kind of take the time and ask those key

questions.

I would say go in with a plan I now when

I go to a doctor appointment, especially at first time doctor,

I will bring a one-pager that gives a brief synopsis

of what I've gone through and it

says these are the issues I'm here for these are questions

that I've thought of to ask you because a lot of times we get in

the doctor's office and it's like a Vortex you forget

what you want to say or the doctor has

their own specialty. So they lead you down a

certain path.

Make sure you go in prepared and ready to have a

conversation and you get your questions answered and also

know that if that doctor is

says this is the only treatment that there is or this

is the only thing I can offer you that there's other providers out

there that have other treatments don't feel like

you have to get pigeon-holed there was times I had a doctor say

if I don't take out your first rib, you

will die. So they rushed me

to surgery I didn't ask questions. I I just did

what the doctors told me know that you can ask questions know

that you can go in prepared and

That you have this time to get

done what you need done and don't feel pressured to

do treatments or take on options or take a

medication that you're not comfortable with. Give yourself time to

look it up unless you are in a life or death

situation.

Take the time to research what you're what you're experiencing

and going through and ask those questions

to the provider.

Did you try any like?

Natural Health Options or any complimentary practitioners

during that kind of like for

I mean how how long a time span is 42 doctors

is three years three years. Okay. So in that

three year period and there must have been

times during the 20th or the 30th doctor

where you're just like you go you're going through the same kind of

procedure time and time again and well that

did you ever like

Think about like going into the natural options or

just I'm not thinking about not saying that.

Going to see a Chinese medicine doctor for example is going to

Ideal you. Yeah, okay, you

did. Well, that's cool. Well, that's probably where I would go because one I I

know for a fact with my personal experience that practitioner is

gonna look at the whole body and actually give you an appointment

time. That's probably more closer to two hours than 15 minutes, right?

So that's a big change right there. So tell us

about your experience like with though that three-year span with

like dabbling in, you know, complementary alternative

medicines a lot

of

be complementary options that I used were

things that I had developed myself at

a necessity and even when I

went to the naturopathic doctors

During that time, they gave me time in their

office, but I was not organized as

a patient. And so I you

know, I would take what they would say, but they

weren't looking at at my

blood. They weren't looking at my x-rays or or

that type of thing. They were they were taking these these random

symptoms that I was having with passing out and

vertigo and having trouble swallowing.

And you know, they they would offer

things like oh you can try this tea. Well now

20 years later. I have a totally

different approach to what I'm doing in a lot of it is naturopathic terms

and and treatments

and options. However at the time I

didn't know how to utilize that time in

their office to take it home and put into my everyday

life, but some of the things I did learn was was use

paper plates instead of dishes because

I kept having trouble with this Donia and dropping

things. So I was breaking dishes. I was

breaking glasses and drink cups. And

so they said, you know switch to paper

plates. They gave me some tools that I could use in my everyday

life. One of them gave me a neck

pillow. That's when I'm late when

I'm sleeping. I can put it underneath my my

neck back on my neck or the side of my

neck that is fitted to my neck.

And it helps me sleep with my with my

neck in the proper position so that the spinal fluid can flow

properly because just having your spinal fluid not

flow properly is a life challenge

like it can bring on other symptoms that you're not even relating or

expecting.

So things like that were helpful. I didn't understand

the why around what I was doing or how

to talk to any type

of medical professional. So it it

literally was going doctor to doctor doctor and some

appointments were really fast. I had a doctor walk in the room

and he said I know what you're trying to do and you're not gonna get away with

it any turnaround and walked out of the room. He did not

examine me. He did not look at me. He did not talk to me just based

off of the paperwork that I

filled out before he came in the room a few pages. He walked

in said that and left and when

I ordered my medical records, he said he

gave me a EMG and he did all these things with me that

he didn't do with the naturopathic doctors. They would

give me things that I could do that weren't medications or

medical procedures and incorporate those

into my life. I did not necessarily understand

the the value of what they were

trying to the tools. They were trying to instill in me is but

I relate that to like in ballet when when you're

you're young and you do a ballet class, they talk

about posture and making sure you're aligned and your walk

is correct and and all of these things. I didn't realize how

important it was these.

Tools that I was being given and how

to incorporate them into my life to say, okay. It doesn't

correct the rare disease that I'm living with but it

does help me have

more energy pennies in a day. It does help me live more

life. And so I was searching for a

magic pill like this one pill take this

pill in you're cured and there's no such thing. I had to

take all of the tools and use them

and incorporate them into my life to live a better

life. So it was

Oh educational for me but also

educational for them and they didn't know anything

about the rare disease I was living with so they're giving

me some general suggestions but not anything that was

specifically helping with the rare disease. It was

yeah, it's life. It's wild right? I mean that doctor you

just mentioning that Dr. Clearly needs a doctor and

Yeah, when I just when I just think about those those types of

practitioners like you know, so I'm a holistic nutritionist and my initial

intake is 19 minutes. Sometimes goes

on for a couple of hours and so many

I want to say

Half other than maybe a couple of dozen of individuals were

coming and talk to me and they just have digestive issues

and it would be mixed between what people might have but I

would have a big section in my intake form

that I would go through with them personally like

about their digestion and like how they eat what they eat what

like mental state they're in when they eat and then having it and

then talk about their stress levels. What's the most stressful thing

that they do and like how that

affects their body and how that manifests for them and

then also like about work, right? So like there was probably 26 people

who had the same kind of problem, you know,

they either skip breakfast altogether or

they had it like while driving to work or they would

have it like in their most stressful State during the

day like getting to work rushed and then

they wondered why like their bowel movements are all over the place and they wondered

why they never digested any food and why they were

Like not energized during the day and then

just by slow just making them aware of that and like explaining to

the how the digestive system works and how you need to be kind of chilled out and calm

to digest their food.

You wouldn't be able to give that type of advice or even have that investigative process

as a practitioner. If you don't have more than

enough time to go over that type

of information with somebody and also

like I mean you as a patient could certainly like

take that investigation yourself and

kind of self-assess yourself and find those things, but when you're

so close to it, right you're so close to the pain. So

close to the diagnosis. It can be really difficult. But when you've got somebody who's

trained as a health professional and somebody who

is independent from your own experience, it

can certainly certainly help. So yeah, that

sounds like a important part of the investigate process

and I just I just have a question in regards. Just just

maybe help other people who might be going through this process of

like going doctor to doctor and just not getting anywhere and

not get any answers.

And it was there a level. I

just want to wonder I wonder like what was your like primary motivation and

if that changed from like Dr. One to

Doctor 43 like because it sounds like are you just looking

to remove your pain? Are you like obsessed with this idea of

a diagnosis you looking for just this one pill?

Like what was the like the motivation that was getting you through

that 43 doctors because it sounds like

You could have put yourself in a better like mental

frame to be like prepared and to like learn from

each doctor to go forward. You know what I

mean? And just like obviously for you retrospectively looking back like how

differently do you think you could have like had your

goals prepared?

I assumed that every doctor was equal in the

same and I didn't recognize

that each doctor had their own specialty and my

goal was to stop the pain. I had

all these other symptoms going on. But to me

the worst was the burning fire Panos I

was dealing with and I just wanted

to get that under control and I I

in that time. I realized that

these doctors are seeing me for these

short periods of time, but I had to be

responsible for myself as a patient in between appointments to

be able to improve my

life and that it wasn't going the doctor was

the tool or a nurse practitioner or physical therapist counseling.

I went to counseling as well

for mental health and

I realized that those are tools but I

have to be the one to step up and take control and by

the 43rd doctor I was at

the point of I have to do something different

and I each time I was learning and trying to do something

different but I never got there

so that 43rd doctor and looking back. I could have done

it sooner. I had a Canadian friend who did microbiome

testing and

she got her

results back and said this was absolutely life-changing. I

think you should do this. There was there was times when

I would be constipated for like seven to nine days.

The longest I was constipated was 21 days.

And I was hospitalized during part of that time.

Even the hospital nurses didn't want to have to deal with

my constipation. And and so

they were okay with me staying constipated for

all that time by the time I got to my primary care

doctor who's a do and said

I have not had a bowel movement in 21 days.

He had an x-ray of my abdomen. He's

like you are full of feces. You have

to go to the bathroom. We have to address this and look at this but people

it along the health system

weren't wanting to deal with those kind of challenges. So I and

I didn't want to talk about it. So we're just pushing it aside

versus what is happening in my microbiome. And

and how can I address this getting those

results? I've totally changed my diet which is lowered.

My kidney stones. Um Seize Your

disorder is is improved to the

point. I'm I still have some seizures but

I used to have a more often now I have maybe one

a year and those are

triggered by lights and light patterns versus what I'm

eating and the migraines and that type of thing so really

it all came

down to me taking responsibility and using

what the

Education in in expertise of the medical practitioners. I

was seeing as a tool instead of an end-all

be-all.

well in regards to like

A community or like I just thinking about like, you know,

if you have a if you have a group of symptoms or you've just got

chronic pain, you're gonna go on Google you're gonna search stuff right? You're gonna

try and connect with people and look for answers. Like what was that like is a

like trying to find communities and groups of people to like

Help you, you know understand maybe

what was going on for you. I that's why I

started writing books.

Because it was the new age when I first got sick.

I was 29 years old didn't really

use the internet much. It was a new thing now. It's

a normal thing to go out and find community and find people

with like symptoms and Google things and say Hey doctor. Could

it be this when I when I did go

to one of the the doctors and say hey, my step

sister has this rare disease and we're comparing

symptoms and it sounds very similar to what

she's going through. He told me a hundred percent. I didn't have

it.

It never tested me for it. He just said 100% you

don't have it and he just wasn't an expert

in that area is that he didn't recognize what

was happening or the symptoms of it or that

type of thing or and/or? He didn't want to treat it. He wanted

to treat something else but that that particular Healthcare

professional gave me six emgs which shows large nerve

fiber injuries.

It would never show.

What I live with RSD, it would never show

that so.

It really was a miscommunication all the

way around and and being able

to now go and and look

things up can be supportive but you can also get bad advice

just because you have the exact same disease as

as your friend your sibling my

stepsister my brother one of

my brothers and I all have the same rare disease.

We get there she passed away but we all

got different treatments and different things helped us. So you

have to find what's right for you as an individual and that's

why now, I advocate for individualized care

because just because you

can Google it it might give you a pack to go down but it

doesn't mean that it's the treatment and and things that

you want because it worked for 10 of your friends. That's

a n of 10. You need to be in of

one. What is the best thing for you in discussing that

with your team of healthcare providers to get

the best outcomes and you can live the best life

that you want to live.

by treating yourself as an individual and

you can use those Community Resources and

networks as a

resource as a support some place

to find hope that hey if that person can find hope there's

hope for me too, but it doesn't mean to do

the exact same things as every single other person with the same

disease.

Did you in your expensive all these doctors did you find

like that? There was like a pattern in regards to like because

I think on a quite a lot of doctors personally, and

I've had experience with people doctors who I don't know but

I want to say the ones I don't know personally. There's a big

like ego. There's a massive ego part being

a doctor. Right? Like I think it's just kind of goes with the territory

right? Like it's a no, it's a no, it's a very important job and you

go through a lot of training and education.

And there's there's certainly a lot of societal status

the cons of being a doctor and I don't know if that is

as much valid now as it is when you know when maybe maybe

like 34 years ago, but like your experience

you just you know, you you spoke earlier about

a doctor who wouldn't didn't even see you and then that kind of

just like lied. So that's a problem.

And what about like these other doctors that kind of like ruled

you out or just like got things wrong or said this is this

you've got this or you definitely don't have that like,

I think that I think having definite in

anything is not very very it's

not very helpful whatsoever. So like did you ever experience for the doctor

who didn't really have that like egocentric Viewpoint and

or someone who like didn't so, you

know, actually this is very interesting. I don't know the answer to this but like let's

do this test and this test and find out I wonder

if that's quite a rare experience. I've heard that experience but

it is rare. My primary care doctor

has been with me for almost

Years, and he is very very open

to anything. I bring him and want

to try and he's told me that me doing

the research and coming in and teaching him.

Has helped him treat other patients that have her

diseases some have my disease some of other diseases but it opened

up his eyes and the whole process him seeing me

go through all of the challenges

that I have his has helped him

practice better and lose that ego. But

I've also had the doctor who took out my first rib,

I had five long collapses one was a

full collapse and four partial collapses after his removal surgery.

And his ego got in the way. He did not

want to admit that there could be something wrong after surgery

and he said some people spontaneously have

pneumothoraxes after surgery and

he did not want to look for the why and

I ended up going to Colorado from Arizona

to Colorado to see a

different doctor who did a 3D scan of my body.

And he immediately saw that the

first doctor had made a mistake and he left two bone

spurs one was hooked into my lung which is

why I kept having long collapses and the other one was hooked around my

brachial plexus nerve bundle.

So I did this surgery to save my life which turns

out. I didn't need in

the first place and then that had complications and

now I have complications with my right lung

being weaker and blebs all my lung and having to

have surgery second surgery to

finish the rib removal that he did not

complete.

so

But he wanted to admit that he could have made a

mistake to look and see.

To from that when he recommended that surgery, do you

think Looking Back Now did you think you advocated for yourself? Well enough

did you ask enough questions? You just went with what he

said. I went with what he said and he said you need this surgery and

I said, okay and I was in surgery within five days.

Never asked a question. I fully wholeheartedly believed

that I needed that surgery and he knew what he was

talking about.

and

you know, I I did have faster constriction.

I did have neurogenic thoracallit

syndrome, but to remove my rib was

because I have this rare disease that none

of us knew at that time. But I had all these other symptoms going on.

He never even took those into consideration and and

I went from having RSD or symptoms in

my face next shoulder and arm to having full body

symptoms with organ involvement and ended up,

you know, wheelchair bound for seven years and on the

wrong path, so it really should have

been me asking speaking up and me

realizing I wish as a

child somebody taught me how to go to a doctor

appointment.

And what that process would be like so that when I

was in a chronic situation that it

would have been easier for me. I could have done preventative. I would

have understood the preventative. It wouldn't just be a belly

dancer saying you need to have good posture to do

proper technique for ballet, but you need to have good posture

to be a fully functioning human being.

And the importance of that as you age and as

you go go and grow through life to overcome

other challenges or prevent other challenges from

ever being a part of your life.

Yeah, I think that power dynamic between patient and doctor is is interesting

because at the end of the day the doctors working

for you and you know, if they're not asking a lot

of questions and if they're not investigating and they're not like taking

the time to like even even like look at you and you

know, you give you that attention with their body language

and speech and everything like that's obviously very very important, but

you will come across doctors that that don't really have

that be that maybe they're having a terrible day or they're just a terrible

person or just a terrible doctor but it sounds like

if you're gonna give advice to other people who

are looking to looking for answers. They're also looking to advocate for

their own health that you know, it's okay to say

no. It's okay to ask questions is okay to

get second opinions and you can be like so brilliantly prepared

for a doctor's appointment. But the end of the day you just

might be finding the wrong doctor. So it sounds

like finding the right doctor is is probably just as important

as like having the right questions absolutely in your

doctor doesn't necessarily have to know about

your rare disease

to give you good treat treatment and get options. They

have to be willing to learn and grow in and check

out what's coming down the pipeline what's available ask

questions when they go for their continuing education

if you can find doctors that will do that

with you and have you be a part of your team

instead of you being

the center and in all these providers trying to

help you you have to be an active participant and

when you do that, even if it's starting as

the wrong doctor or that doctor doesn't really know you

you can build a relationship and learning grow together to get

what you need done and accomplish so that you

can live the best life you can live.

What do you think doctors could do better say you've got these 43 doctors

in a room and you're standing

up on stage and you're giving them a presentation about your three years

and you're going through it. You've got through like

maybe three four bullet points of like this is what I this is

how I feel you can better serve and me again.

If I come, you know, if someone like me comes into your doctor's clinic,

what would you say be open about what options you

have available?

Speak up to the patient. Don't don't say to

the patient. This is all there is say this is

all I can do and and be let

your ego go a little bit and say you should see

this other provider or somebody else might

be able to help you more or offer you something different don't lie

and say this is the only treatment and

Or you know, I had a doctor

didn't want to tell me I had gastroparesis which is secondary to

RSD in a lot of patients. Not all but

a lot and he didn't want to tell me

that and I said put it in writing. Can you

put it in writing that I do not have gastroparesis so

I can take that to my primary care doctor and we can look

at some other options and and I

waited in his his waiting room and he ended up writing a

letter to my doctor saying that I had gas or Priestess.

And he didn't want to be the one to tell me.

maybe because he didn't want to have to treat me he wanted to do surgeries and

what I needed was a change in my diet and and a

new way to approach it and he wasn't willing

to go down that path.

So he was trying to push me off just be open and honest is number

one. And then when you have some

tools if you don't have enough time in your

In your appointment with the patient maybe give

us some handouts or things that we can go look up for ourself

tips and tools that we can do on our own

in between doctor appointments so that we can

better our daily living that would be very helpful

and it will keep us coming back to you and

you will make more money because then we'll be like this doctor

a is a great doctor and they don't have

all the answers but they're willing to help out or willing

to give me some tools that I can do on my own to help myself

out and that makes all the difference in

a relationship with the patient and and provider.

well, yeah, that's good advice and

I mean you obviously in the states, I'm in Canada and you

know rare diseases and things that aren't conventional can end

up like, you know costing you money out of pocket, you know, my youngest

son's got like a pretty red disease condition and

you know, like the a lot

of them a lot of the medication I have to pay we have to pay for ourselves over

here and some of the other treatments and this will

this will probably go on foot for the rest of his life and it's

like, you know life is life is expensive like right now

so like, you know, we have to like we have to budget for like his

condition. So it's you know, it's It's Tricky. So what's

your your experience of the red disease and you

probably got connections with other people who have read diseases as well. You've got

some in your family. What what's your experience with with the

monetary side to that?

That you have to budget even in even in America no matter

where you are. I talk to patients all over the world and I

have some very close friends that are rare disease patients in Canada.

And it no matter where

you live. It's something that you have to pay attention

to you have to you have to budget come up

with ways that you can

get the care that you need and it sometimes

takes creativity negotiating. I know

in Canada the system is a lot different and some

of my rare disease friends you they can get

a doctor appointment, but it'll be you know months out or you

know, they get that time with

the doctor and then they're follow-up is months later and it's

not putting them on a path to

success living with the rare disease financially look

for is especially and I

say it's we have copay relief funds that you can look for that do disease

specific and or general funds it help

pay for medications.

You can reach out to them manufacturers of the medications and

see what kind of programs they have. They're different in every country. So

it's not like a blanket one size fits-all for your country,

but reach out and find out what they offer patients in

your countries as to what options

you have and then knowing that rare

disease especially affects the entire

family everything that the patient goes through the

caregivers providers family members go through except for

the physical aspects of the condition, but

the emotional mental Financial aspects social

aspects everybody in the

families affected and knowing and understanding that can help you

support each other and say, okay Dad mom sister brother.

You need a break from rare disease

go out and do something for yourself take the

time that you need for yourself because just like

when you're on an airplane and the oxygen falls down, they

say put your own oxygen on first, you can't continually give

the rare disease patient the attention

Or help or help or tools that

they need if you don't take care of yourself first or

you'll end up in a in a similar chronic

situation and then you're paying for two people in

the family or or if it's hereditary multiple people

and and not just physically but also

financially Also spiritually emotionally mental

health wise so take the time for yourself to

take care of yourself before you

help the patient.

Yeah, I think that's very important. Obviously these things can be

Financially expensive but without question psychologically expensive

and physically expensive as well. So if you're not keeping an

eye on that and budgeting for that time

as well is very very important. So I appreciate that was awesome.

And how would you think people can

start how do you think people can find hope within

like those quite dark times, you know, especially during

the doctor after doctor and you know,

you just not kind of getting anywhere and it's you know the systems frustrating

you and it's you seemingly like going nowhere like,

you know, I genuinely feel like

people were to

really stick with it and you know hold themselves with

gratitude and

then those things will eventually

come but like they're gonna be points along the way where you just

feel hopeless. I'm sure but 43 doctors. I'm sure

there were multiple times or you just you know, thought it

was gonna go nowhere.

in

I won.

As a cheerleader, I was a cheerleader since the age of four and my

dad would ask me when I would be

down on the field at a football game and say you're losing 50 to

zero.

How are you still down there smiling?

And and when I became chronically

ill I was still smiling

and I think that hope is

what got me throwing through and even the

smallest glimmer of hope on the days when my Hope was the

lowest. I still had a flicker a small

flame of Hope there was burning but to me

I changed what my win was.

And changing my mindset helped me get through the

toughest times. So when I would say

You know, we're losing 50 to 0.

Maybe we'll score and maybe we won't lose 50 to

0 maybe in the last second of the game. We'll get a Touchback

and get three points and all the

sudden. It'll be 50 to 3 and that would be my new win. So

I would change what when meant to me.

and then so I did that in cheerleading

and I transform that into a mental cheerleader type

of view so that helped me through and then one of

the first counselors I saw gave me an assignment

that go home and do this homework

assignment and this has gotten me

I think the furthest

Personally, it's called the I am.

And what he had me do was go home

and write down all the things I am.

And at this time I had lost my job.

I lost my marriage of 10 years. I didn't know where

I was gonna live. Like literally the world was crumbling around

me and I'm going from Dr. Because I would not have

given up the life. I had I worked hard to

create the life I had and

The couple days later. He called me and said out your appointment's coming

up in a few more days. I just want to see how your homework's coming and I

said I suck. I have nothing. I

I have nothing to write down

and he helped me get my list started and by

the time I got to his office I had about 50, I am written

down and then by the time I left that appointment I

had 75 I am and now I have over 150. I

am he see that you can be too

contradicting things at the same time and that

That's still part of you and just because I can't

physically be a cheerleader anymore doesn't mean

that I can't mentally be a cheerleader again reframing what

I'm doing and and who I am and seeing

that what I do isn't who I am.

And you know, I'm bubbly, I'm bright. I

I'm vivacious I'm

outgoing so when I'm having my low hope

moments I go back to my I am list,

which I have printed out still all these years later and

I go back and read my ions and

remind myself of the things that make me

up. Even if I cannot be all of those things right

now in this moment. They are still a part of me and that

gives me hope

That's awesome. I am hopeful that's great. I

like that. I am that's great and

What are some of the treatment options that you've experienced that of

like worked with helping with chronic pain?

You know, I'm obviously not maybe not like a cure

but like there's got to be some things that people can that could

people can do and have access to or they can you know,

try for themselves or you can give me some examples.

Sure, some of the non-invasive things that I

wish I had tried from the start VR virtual

reality very helpful mindfulness meditation prayer.

mirror therapy

I've also done some more invasive things

like stem cell therapy and I do

infusion therapy three to four times a year with medication

anesthetic called ketamine.

And that not only helps with the chronic pain

that I live with and help put out the burning fire pain. It's not

a cure I come in and out of remission.

But it also helps with depression so very

useful for both and

I've also worked with

a neuro scientist a few different neuroscientists that

at different universities, but the

one that created this device for me,

it's called oral orthotic. It helps lower neuro-inflammation

in the spine and brain it's a it's a device

that fits over your teeth and holds your jaw in place. Your jaw

has lots of nerves that run through it.

And it's like kinking a water hose when you can unkink it

and put your jaw in proper position. It helps you get proper

flow to your brain of signals chemicals and

all the things that you need and that helps

with chronic pain diclofenac which

is it was on prescription only here in America.

I'm not sure in Canada if it's prescription only

but it's over the counter here now and I

use diclofenac and I've

been able to get off of pain medication but

I have used pain medication on a

daily basis for quite a few years and I was able to get off of

that using these other treatment modalities in combination

with each other and been able

to get off opioid therapy. So but I

have done that and again all

of them take the edge off the thing the ones that

help the most for me that I saw significant Improvement, like

wheelchair to walking was ketamine infusions and

the oral orthot.

Help with proprioception balance coordination as well

as lowering neuro-inflammation throughout my

entire body. So which is also non-invasive

to put that device once it's

made for you on your teeth that's been very helpful. And

I used to have to do it all day and night 24 hours

a day. I kept it in even to eat. I had them build teeth onto it

so I could eat with it. But I've progressed

to a point where I need it. Sometimes during the

day and I wear every single night to sleep.

Wow, that's some fantastic options there. It sounds like there are some.

Universities or adopters scientists out

there like they're really trying to create using a combination

of light, you know, natural therapies and pharmaceuticals and

even technology to help people's experience

with pain. So that's awesome. How can people

connect with you and you know, check out some of

these books that you've written and and if they've got questions maybe like

where can you direct them? Absolutely my website my personal

website is Barbie ingle.com Barbie

ends with a why Ingles starts with

an eye.

And and then also as the president

of International Pain Foundation, you can go to International pain.org

and see information tips

tools tricks as well

as resources for over 150 different conditions that involve

chronic pain and some of the options

that are available for those conditions and and

getting some relief and/or treatment and better

your daily living. So please check

that out as well.

Wonderful. I'll make sure those links the international

pain.org Bobby ingood.com and your

Facebook as well. Like I make sure they will connected in the show notes. But thank

you so much for coming on to the show today to talk about chronic

pain and your experiences with the conventional

medicine and that that whole invested investigative process.

I think that and information like this can help

people save a lot of money a lot of time a lot of energy and

a lot of tiers. So thank you so much for sharing

that with us today.

Absolutely. Thank you Simon. So glad to be here and everybody listening go

right now and rate this podcast five stars,

wherever you're listening from and let Simon

know how awesome and motivating and

hopeful this podcast is and don't just

listen to this episode listen to all of them so that you get

your dose of Hope.

Love that I don't have to do the sign off. Now. That was beautiful.

Thanks to the plug. That was great. I appreciate it.

Well, thank you. Again. Bob really appreciate your time today and

I will make sure everyone gets connected up with you. But that is

it for this episode of True Hope cast the official

podcast with true hope Canada. We'll see you next week.