0:04

Hi everyone, and welcome back for Season

0:06

three of Untold Stories Life

0:08

with a Severe Autoimmune Condition. This

0:11

podcast is a production of Ruby Studio

0:13

in partnership with Argenics, and I'm your

0:15

host, Martine Hackett. I'm an Associate

0:18

professor and Director of Public Health Programs

0:20

at Hofstra University, and as a

0:22

researcher, educator, and public health

0:24

professional, I've spent my career

0:27

studying the complex realities of health

0:29

care disparities and advocating

0:31

to do something about them. On

0:33

this podcast, I speak with real

0:36

people living with severe automune

0:38

conditions like mayasthenia gravis

0:40

or MG and chronic inflammatory

0:43

demielinating polyneuropathy otherwise

0:45

known as CIDP to help

0:47

expand the conversation around these

0:49

shared experiences. Every

0:52

person with a severe autoimmune

0:54

condition has a unique diagnosis,

0:56

journey and stories of struggles,

0:59

resilience and heal help. We're

1:01

here to shine a light on as many

1:03

of these amazing stories as we can,

1:05

stressing the power of community care

1:08

and self advocacy as we embrace

1:10

this very emotional journey together.

1:14

Every story shared in this series underlines

1:16

the physical challenges that are part

1:19

of living with an autoimmune condition as

1:21

well as the importance of connecting with a supportive

1:24

community. In the case of

1:26

those living with chronic inflammatory

1:28

demilinating polyneuropathy or CIDP,

1:31

the emotional toll can feel

1:33

equally as unbearable. When

1:35

you add the stress and unpredictability

1:38

of everyday life and progressive symptoms

1:40

like muscle tingling and weakness, it's

1:42

easy to lose hope. To overcome

1:45

these obstacles, Julie had

1:47

to develop a resilience that is

1:49

unmatched by others, which helps

1:52

them to turn adversity into

1:54

a story of courage and strength

1:56

that inspires us all. Today's

1:59

guest Julie is no stranger

2:01

to turning battles into bridges.

2:04

Julie was diagnosed with CIDP

2:07

at the age of twenty eight while

2:09

in the throes of motherhood. Parenting

2:11

young children with the progressive muscle

2:13

weakness and motor dysfunction was

2:16

no easy feat, and just

2:18

as she started to adjust, life

2:20

threw another curveball at her. She

2:23

became the sole caregiver for

2:25

her husband, who was diagnosed with

2:27

pancreatic cancer. Julie

2:29

found herself at a crossroads, give

2:32

in or give more. But

2:35

as you'll soon hear Julie

2:37

is not one to give in. Through

2:40

her CIDP journey, she

2:42

began using her creativity and

2:44

passion for teaching in ways

2:47

that she never imagined, raising

2:49

awareness, community and education.

2:57

Hi, Julie, Hello Martin. So

3:01

good to meet you. And before we start

3:03

with our first question, I am seeing you and I

3:05

see in the background. Could you

3:07

explain what you're doing right now in addition to talking

3:09

to me?

3:10

Yes, Actually, in addition to talking

3:12

to you right now, I am receiving

3:14

my IVIG therapy. I

3:16

am able to get home infusions, which is

3:19

nice, but I do receive

3:21

IVIG every two weeks, and

3:23

I have my full time nurse here too, so for

3:26

my infusion, so I'm not alone.

3:28

She ever sees and make sure that everything

3:31

is okay and that there's no problems

3:34

before, during, and after the infusions.

3:36

So what a better time to talk about

3:38

CIDP than now.

3:42

IVIG or intravenous immuno

3:44

globulin, is a treatment where a person

3:46

receives a transfusion of donor plasma

3:49

that contains antibodies that help manage

3:51

diseases. While usually administered

3:54

in hospitals, it can also be given at home,

3:56

a convenient option for anyone looking

3:59

to balance how much time they spent in a hospital

4:01

environment while managing their symptoms.

4:05

Tell me what your life was like before

4:08

you received your CIDP diagnosis.

4:11

What were the main things that you were focused on at

4:13

that time?

4:14

I would say, before I received my diagnosis,

4:17

the main things that I was focused on were

4:20

my family. I had a three

4:23

year old daughter at the time. I was

4:25

pregnant, waiting for the birth of

4:27

my son, and enjoying

4:30

being a grad student and finishing

4:32

at my grad work and starting my teaching

4:35

career and education and

4:38

just enjoying family time,

4:41

playing with kids, running around,

4:43

doing the things that I needed to do.

4:45

Wow, and so young and so what were some

4:47

of those earliest symptoms?

4:50

In nineteen ninety five, we

4:52

noticed that I had just gotten off

4:54

of an airplane to visit my parents,

4:57

and I kind of had had my hips

4:59

for kind of herding, but my parents had

5:01

noticed I had an awkward gait. My

5:04

dad was a pediatric radiologist and

5:06

my mom was a nurse, And

5:10

when my dad had mentioned about my gate, I

5:12

had said, well, you know, I've noticed my hips are kind

5:14

of bothering me. But other than

5:16

that, I hadn't really noticed anything major

5:19

and in my mind, I'm thinking, Oh, it's just a post

5:21

pregnancy.

5:22

Waddle, no big deal.

5:24

He suggested that I go see my

5:27

primary care physician when I got back

5:29

to San Antonio and

5:31

to follow up and to get a referral to an

5:33

orthopedic.

5:34

So that's what I did. Wow,

5:36

and that was the beginning of your

5:39

diagnosis journey.

5:40

Yes, I was twenty eight years old and

5:43

went to see the primary care physician

5:47

and at the time he was asking me to stand

5:49

on my toes, and I thought, well, that's kind of weird,

5:52

you know, who goes around and stands on your toes? But

5:54

it was more so like when you're reaching up in the cabinet

5:56

for a high shelf, you know. How

5:59

was I doing that? And I realized

6:01

that I was actually holding onto the counter most

6:03

of the time to do that. And

6:05

then he asked me to stand on my heels, and I

6:07

thought, man, this doctor's are really crazy.

6:09

Now, who goes around standing on

6:11

their heels.

6:13

He'd done some.

6:13

Blood work and I actually

6:16

got a phone call the very next day from

6:18

the doctor telling me that I was not going

6:20

to go see the orthopedic, but that

6:23

he had made me an appointment to see a neurologist

6:25

that afternoon, at one o'clock that

6:27

afternoon. Yes, so the

6:30

world stopped. I knew at that point

6:33

that I wasn't dealing with an orthopedic

6:35

issue, that something else major was going

6:37

on, because it's very rare that a

6:39

doctor would call and make an appointment for you,

6:42

very rare that the doctor himself would call

6:44

you and pull you out of teaching

6:47

to come to the phone. And

6:50

so I knew at that point before I went

6:52

to the doctor's office that something.

6:54

Big was up right. And

6:56

so all of those things, like you said, which were just

6:58

extremely unusual for something

7:01

you thought like, hey, let me just get this checked out because

7:03

your dad recommended it.

7:04

Right.

7:05

So then what happened after that, after you

7:07

went to the neurologist.

7:09

Well, I went to the neurologist, and

7:11

it was my CPK level, which

7:14

is the muscle inflammation level, that

7:17

actually was what the doctor was

7:19

concerned about, and

7:21

it came back a little elevated. And

7:23

when it came back elevated, that's what

7:26

kind of sent the red flag up to the primary

7:28

care physician.

7:29

And I know we're hearing some beeps and

7:31

some whorrying in the background.

7:33

Can you tell us what that is, Oh, I'm

7:35

taking my blood pressure every so often,

7:37

or that's my poll that's beeping. I

7:39

have to monitor my blood pressure for

7:42

the first hour every fifteen

7:44

minutes. So that's just part

7:46

of my regimen for my IVIG.

7:49

And I have my full time nurse.

7:50

Here too, so so you're good.

7:52

So I'm not alone. Yes, I'm good.

7:54

She oversees and make sure that everything

7:57

is okay and that there's no problems

8:00

during and after the infusions.

8:02

So much so that we can have this conversation right

8:04

now.

8:05

That's right.

8:06

And I was lucky enough that the doctor

8:08

that I saw, he ran some tests

8:11

and all of this is between the

8:14

end of Thanksgiving break and Christmas.

8:17

Oh gosh.

8:18

And before we.

8:19

Left for Christmas break, I had emg's

8:21

done, I had a muscle biopsy

8:24

done, I had spinal

8:26

tap, all sorts of different blood work,

8:29

and the doctor basically had

8:33

eliminated several things.

8:36

But he told me before Christmas

8:38

that it was either muscular dystrophy, muscular

8:41

atrophy, multiple miloma,

8:44

or chronic giambret, which

8:46

is what they called CIDP back

8:48

twenty nine years ago. At that point,

8:51

it was waiting to see and

8:53

get the results back from the muscle biopsy.

8:59

While CIDP in gon Beret syndrome

9:01

or GBS, are both conditions

9:03

in which the immune system attacks

9:05

its own nerves. CIDP

9:08

presents slower because

9:10

of this. GBS is considered a

9:12

classic acute autoimmune neuropathy,

9:15

while CIDP is a classic

9:17

chronic autoimmune neuropathy. It

9:21

seems to me that that's a pretty accelerated

9:24

timeline to be able to get that type

9:26

of diagnosis.

9:27

Yes, very accelerated, and if

9:30

you think back twenty nine years ago, I

9:32

mean, it's still a very rare disease. It's

9:35

one in one hundred thousand, so even back

9:37

twenty nine years ago, it may

9:39

have been higher rates less

9:42

diagnosis. I was just

9:44

in the right place at the right time, and

9:47

this doctor was smart enough

9:50

and knew exactly what he needed

9:52

to do, so I immediately

9:54

started on treatments. One

9:57

of the things the doctors did back then as they

9:59

started me on plasma poresis,

10:02

which at that time is all the

10:04

doctors really knew what to do, and

10:07

they really didn't know how

10:10

long to do plasma poresis.

10:14

Like so many diagnosed with CIDP,

10:16

a barrage of what ifs and could

10:18

bees forced Julie to

10:20

build her resilience from the very beginning.

10:23

Despite being diagnosed twenty nine

10:25

years ago, misdiagnosis

10:28

remains incredibly common, with

10:30

up to fifty percent of people

10:32

experiencing nerve issues and symptoms

10:35

that mimic other conditions.

10:38

I felt like a guinea pig at that point because

10:43

the question was how do you feel? And

10:46

usually you go to your doctor and say, well,

10:48

how am I supposed to feel? And

10:51

this was a situation where I learned early

10:53

on in my disease that I needed

10:56

to be in control and I really needed to tune

10:58

into.

10:59

How was I feeling.

11:01

After the marathon rounds of plasma

11:03

paresis. We then started IVIG

11:06

therapy, and I think I've calculated

11:08

I've been on IVIG therapy

11:10

for probably over twenty years.

11:14

And like you said, you had to become the expert

11:16

in terms of knowing what was happening,

11:19

because it's like they were developing these

11:21

treatments as you were going through

11:23

your stages of this condition.

11:26

When you did official diagnosis. What

11:29

emotions do you remember experiencing

11:32

at that time?

11:33

Oh, I remember being really angry, and

11:36

I remember the why does

11:38

this have to happen?

11:39

To me.

11:40

You know, I have two young children.

11:43

What am I.

11:43

Supposed to do?

11:45

How can I be a productive member

11:47

of society and deal with having

11:49

this disease? And just uncertainty

11:53

because it was so new, and you

11:56

know, I was fortunate, like we said, that I had

11:58

such a quick diagnosis, and

12:00

also fortunate that I had family

12:03

that was in the medical profession, so my dad

12:06

could confer with other physicians

12:09

and make sure that I was on the

12:11

right path.

12:12

Yeah, I mean autoimmune conditions can

12:15

alter the entire course of an entire

12:17

way of life. Did you face

12:19

moments when leaning on

12:21

others was uncomfortable or

12:23

unnerving?

12:25

Yes.

12:26

I have always been very independent,

12:28

and I felt like it

12:31

was very difficult for me to lean on

12:33

others. I have very limited

12:36

use of my hands, and

12:39

oftentimes when it comes to opening up

12:41

say string cheese packets or

12:44

apple sauce containers or anything

12:46

that have like the little lips on the top,

12:49

very difficult for me. And often

12:51

people would want to help me, and I

12:53

would not allow them to help me. In

12:56

a way, that was being stubborn, but

12:59

in another way, it was me

13:01

trying to preserve what little

13:04

dignity I could possibly have. And

13:07

I also had the philosophy of

13:10

the next time I need to open my string packet,

13:12

my string cheese packet, Martine's not going

13:15

to be there, so how am I going to

13:17

open it? So it was more of

13:19

trying to find that fine line of I

13:22

want to try myself. I'll

13:25

take some help if I absolutely need

13:28

the help, because whoever's

13:30

helping me this time around may not be there for

13:32

next time, So what's another way

13:34

that I might be able to do it? And

13:37

so that's kind of how I really figured out how

13:39

to navigate a

13:43

world with a disability.

13:45

So really, you know, it sounds like you were

13:48

You learned to rely on people, but you

13:50

also had to learn how to rely on yourself in

13:52

this with your condition.

13:54

Yes, yes, definitely

13:58

so.

13:59

Julie, you're her husband was

14:01

diagnosed with pancreatic cancer

14:03

and you became his sole caregiver.

14:06

Yes, how did this impact your

14:09

perspective on your own journey and

14:11

condition?

14:13

That was a real hard time. My

14:15

daughter was fifteen and my

14:18

son was ten. It was no longer

14:20

worrying about myself, but

14:22

worrying about the kids

14:24

and taking over a big majority of

14:27

their care, plus helping

14:29

and taking care of my husband. We

14:32

had several different times where he still

14:34

continued to work for a while. I

14:37

remember him leaving work one day because he was supposed

14:39

to meet us for lunch and

14:42

him getting lost

14:45

and not knowing where he was going.

14:48

And thank goodness, we had a

14:50

bunch of college students who he worked

14:52

with and they were all waiting for us. So

14:54

we had a search party, Oh my gosh, and

14:57

we sent all of these college students

14:59

out throughout San Antonio to

15:02

find out where he was because he

15:04

didn't know where he was. And

15:07

luckily he was not too far away, but it was

15:09

a condition that he probably should not have been driving,

15:11

and so that was a real.

15:12

Big aha moment.

15:15

Having to take care of him was a difficult situation.

15:18

I remember having my

15:20

appendix taken out on

15:22

Father's Day weekend. It was like on a

15:25

Saturday or Sunday that I had the appendix

15:27

removed, and I was home by like

15:29

a Wednesday, and

15:31

I remember my husband being

15:35

out of sorts because he was on high doses

15:37

of pain meds and all that. And I

15:39

remember waking up and having

15:41

to put him in the shower to clean him up

15:45

because he thought he had gone to the toilet

15:47

and hadn't, and

15:49

so I remember showering him, and here

15:52

I am postop and I'm supposed

15:54

to be taking care of myself, bending

15:57

over cleaning him, getting

15:59

him all straightened up, and

16:01

getting him back into bed, and

16:04

you know, doing things that I know I

16:07

shouldn't have done, but I did.

16:08

What I had to do. So

16:12

many of those managing life with CIDP

16:15

are forced into situations that they

16:17

never imagine themselves. In Julie's

16:20

incredible story is a reminder

16:22

of the importance of remaning resilient and

16:25

how perspective truly

16:27

can change everything.

16:31

I think the perspective was that

16:34

knowing what it was like to be a care provider

16:38

and knowing that I hoped

16:40

that I wouldn't get to the point that I would have

16:43

to have somebody to care

16:46

for me like that, but also being realistic

16:48

along the way, knowing that I'm

16:50

not there yet, but the future may be

16:52

that, and learning

16:55

to just kind of let go of that and say

16:57

it's okay. You know, this

16:59

disease is what it is. You

17:02

know, there's days where I'm angry, but I

17:06

kind of get over that real quick, and

17:08

I look at the positive of

17:10

the disease and the way

17:13

the positive things that have happened because

17:16

of the disease. And I know that sounds just really

17:18

odd.

17:19

Yes, please explain.

17:21

You know, I had to stop teaching early. I

17:23

retired early from teaching. My husband

17:25

had passed away ten months after his

17:27

diagnosis goodness, so I had to continue

17:30

working full time to raise

17:32

my kids. To have health insurance was

17:34

the big thing, because I had to

17:36

have health insurance to keep the costly

17:40

expenses of my

17:42

infusion and medications I was taking.

17:45

And so I just kind of just went through

17:47

the motion and got stuff done, and

17:50

I was exhausted, but my kids learned

17:52

how to be a team and we would

17:54

work together, you know, getting

17:56

the housework done, doing all of

17:59

the shopping, groceries, washing

18:02

clothes, all of that. I just remember

18:05

having just a hard time during

18:08

that time, but somehow I made it through.

18:10

Then it came time where I

18:13

was getting worse and the doctor said, you

18:16

know, you need to look at

18:19

do you want to spend time with your family or

18:22

do you want to get

18:27

worse quicker? And I'm like, gee,

18:30

let me think about that for a second. And

18:33

so I said, does that mean you're signing the paperwork?

18:35

She said, yes, I'll sign your paperwork.

18:38

And at the time, I was like, Oh my gosh,

18:41

what am I going to do? All I

18:43

know is teaching teaching

18:45

special ed. What's

18:47

going to happen now? And

18:50

as I let that go pretty

18:52

quickly, I realized that there

18:54

was a big, great opening and avenue

18:57

for me to advocate and

18:59

to not just be an advocate for myself,

19:02

but be an advocate for others who

19:04

are dealing with this disease. I've

19:07

been able to talk to medical professionals,

19:09

pharmaceutical companies, all

19:12

sorts of individuals who

19:14

have the disease who want to know

19:16

more about the disease, and it

19:18

really has been a blessing in that

19:20

way that I am teaching. It's

19:23

just a different audience and it's

19:25

a different subject.

19:27

But that passion to be able and the

19:29

ability and the gift to be able

19:32

to take this kind of information

19:34

and share it with others

19:36

so that they can use it is you know

19:38

what You're still able to do right right?

19:41

And I think your perspective on things

19:43

such as this really helps

19:46

and determine how things are

19:48

going. If you're real negative about

19:51

things, And like I said, I do have

19:53

my woes me days, but I allow

19:55

myself to be a patient On a day

19:57

like today, this is my day.

20:00

This is a day where I can say, oh, you know, I'm just

20:02

not feeling very good. This is a day

20:04

where I know that I'm not going

20:07

to be cooking dinner, so

20:09

I plan ahead, I make something easy

20:11

for my son to cook, or

20:13

we'll go get something, and we just know.

20:15

This is my drip day.

20:16

This is my day where I can lay around and

20:19

be a patient and allow

20:22

somebody to wait on me and to help me

20:24

and to do the things that I need done.

20:26

And then from then on tomorrow

20:28

morning, I'm like a little energizer bunny,

20:31

and I'll go back to doing the things that I need

20:33

to do for me and.

20:34

For the household.

20:36

But I allow this

20:38

day every two weeks to

20:40

be my day to just have

20:43

the excuse to feel yucky and

20:46

have the excuse to not want to do much.

20:50

We'll be back with more untold stories

20:52

after a quick break. As

20:58

a global immunology company committed

21:00

to improving the lives of people suffering

21:02

from severe autoimmune conditions,

21:05

Ourgenics is dedicated to shining a

21:07

light on resources that support

21:09

the CIDP or chronic inflammatory

21:12

demilinating polyneuropathy community.

21:14

Shining through CIDP is

21:16

a new website that aims to empower

21:18

those living with this rare condition in their

21:20

families to create the space needed

21:23

for a more joyful life. Shining

21:25

through CIDP features real stories,

21:28

tips on emotional self care, and new

21:30

ideas to help navigate the CIDP

21:32

journey. For more information, visit

21:35

Shining throughcidp dot com.

21:45

And now back to untold stories.

21:50

So, my gosh, Julie, you've seem you know, obviously

21:53

this is well earned, but so

21:55

positive about your approach

21:58

to your life. But you also mentioned

22:00

anger due to the unfairness of your

22:02

situation. Did that anger

22:05

impact your relationships in any way?

22:08

No, I think I kept most of my anger

22:10

to myself, and really,

22:13

after my husband passed away, there was nobody

22:15

to be angry at except for him. And

22:18

there's still times that I am angry that he's

22:20

not here having to deal with some

22:23

of the stuff I dealt with with the kids. But

22:25

overall, who am I

22:27

going to get angry at anymore? I

22:30

mean, I'm twenty nine years in it's time

22:32

to be done with the anger, and

22:34

it's the acceptance and I've

22:37

acted that I've had this disease. I

22:39

sometimes find myself getting a little

22:42

angry when people talk about remission,

22:45

because remissions not necessarily

22:47

everyone's vocabulary for CIDP.

22:50

Some people do go into remission, other

22:53

people like myself. It's a continuing

22:55

battle, and it's continuing to get slowly

22:58

and progressively work. And

23:01

I've already had the conversation with my doctor,

23:04

you know, will I end up in a wheelchair

23:06

one day? And my doctor

23:09

has said yes, that that most likely

23:11

will happen.

23:12

And so my goal is.

23:14

To do whatever I can do and

23:17

have as much of a productive

23:19

life as possible before I get

23:22

to that point. Now, that doesn't mean that I can't be productive

23:24

in a wheelchair. It just means

23:26

that things will change again and that my

23:29

norm will be different. I've

23:31

had many experiences being

23:33

in a wheelchair because as

23:36

with CIDP, I've had several different falls

23:38

along the way where I've broken

23:41

a leg or broken a foot, you

23:43

know, and I've had to be in a wheelchair non weight

23:45

bearing because i don't have enough

23:47

strength everre body strength to hold my body

23:49

up on crutches and that kind of thing.

23:52

So I've had that.

23:52

Little taste of wheelchair life,

23:55

and as long as I can put it on the back burner.

23:58

I will, but it also involves

24:00

energy conservation on my behalf. So

24:04

if I'm tired, that means you take

24:06

the buggy when you go grocery shopping with

24:08

no shame, right, no shame, You drive

24:10

it and you do what you need to

24:13

do.

24:13

You know.

24:13

I still get people that will look at me when I

24:16

park in the handicap spots and I have handicap

24:18

plates, you know. And I've often said

24:20

if somebody were to come up to me and

24:22

say, well, how come you're parking in a handicapped

24:24

spot, I would gladly say,

24:27

well, I have CIDP and

24:29

say the whole thing out first, because

24:32

when you say chronic inflammatory demyelinating

24:34

polyneuropathy.

24:35

They're like what and

24:38

yep.

24:38

So I would gladly tell them that, and I would glad

24:41

to say I would be more than happy to give you my

24:43

disease if I could, but

24:45

since I can't and it's chronic,

24:48

I'm parking in this spot. Have

24:51

a great DA yes, so

24:53

it's not being handicapped at Oh my

24:55

god, I have to park in that handicap spot.

24:57

It's extra special parking,

25:00

and I'm an extra special person because

25:02

hey, I'm one in one hundred thousand does

25:04

it work with the two? But you

25:07

know one and a hundred thousand, and so I'm

25:09

going to take that space and I'm going to use it if I

25:11

need to use.

25:11

It that day. That's right, that's right, and that's

25:13

what it's there for. Yes, So,

25:16

Julie, you faced some moments

25:18

of having to explain yourself to

25:21

others. Did you face moments

25:23

like that at work?

25:25

Oh?

25:25

Yes, definitely when I was

25:27

at work. And it's really amazing

25:29

to me adults are worse

25:32

than kids. You

25:34

would think being in a special education

25:37

profession and going into an

25:39

educational building where there's supposed to be

25:41

other educational professionals, that

25:43

they would be that as professional. I

25:46

remember getting into an elevator and

25:49

I was wearing my ankle foot orthotics

25:51

and I also had hand splints on at the time,

25:54

and another educator on

25:56

that elevator looked at me and said, wow,

26:00

you got hit hard. Wow, And

26:02

I'm like oh, And I turned

26:04

around and looked at him and said you should see

26:06

the other guy what, because

26:10

you know, I'm just when he's dumbfounded

26:13

at you know, what do you say? Whereas

26:15

kids? You see kids and they'll come up and they'll say,

26:18

or you can hear them whispering to their parents.

26:20

Why does she have those on? What are those

26:22

four?

26:23

And I'll be right open. I'll go up to the parent and I say,

26:25

you know what, I'm so glad that your child

26:28

asked you about that. I don't mind

26:30

telling them if you're okay with me telling them

26:32

what these are and why I wear them.

26:34

You know. And it got to the point too.

26:36

I had an adult tell me when

26:38

I was wearing my AFOs that I could work with

26:40

Santa Claus wearing those things,

26:43

and I thought, I'm not sure what he's meaning,

26:46

but I took it as a compliment. I said, oh, yeah,

26:49

Santa Claus is one of my best buddies. We work

26:51

well together, you know. And so you just

26:53

kind of try to make fun and light up the

26:55

situations. And from that point on,

26:57

I knew people were looking at my So

27:01

what did I do? Instead of trying.

27:03

To hide them?

27:04

I went and bought the funniest, craziest

27:06

look in knee socks I could possibly find,

27:09

and I gave people reason to look at them.

27:12

So my goodness. Yeah, So it seems like

27:14

like you said that the adults were sort of

27:17

less well trained than the children.

27:20

Correct. So it sounds like facing

27:23

moments, you know, like that, Has

27:25

that helped you to strengthen your

27:27

resilience when you look towards

27:30

the future? Oh, I think it has.

27:32

I think it's mentally helping me prepare

27:35

for that time. One of the

27:37

things that I've really enjoyed doing

27:40

is helping others who are experiencing

27:43

issues with their disability. So

27:46

I'm always looking for adaptive devices

27:50

and ways to adapt my own items

27:53

to make things easier, like

27:55

I say, to conserve energy. And

27:58

what I have done and I'm continuing

28:00

to do is I've compiled a list of

28:03

different adaptive devices that I've used

28:05

along the way, and I found

28:08

that there was a big need. I do a lot of

28:10

work with the GBSCIDP Foundation International,

28:13

and we have a symposium every couple

28:15

of years, And during the symposium,

28:18

I noticed that people were saying, oh, I have

28:20

such a hard time zipping my pants

28:22

and doing this and doing that, And I'm

28:24

like you are, Oh, well have you

28:26

heard of a zipper pool?

28:27

And They're like what? So

28:30

I knew that.

28:30

There was a need. So then I've taken my

28:33

passion for finding devices and

28:35

I've created a c and

28:38

try area with

28:40

adaptive equipment. And I've even

28:42

involved different individuals and

28:45

different vendors on my own who

28:47

have adaptive clothing. I've

28:50

just gone out on my own and tried

28:52

different things. And one

28:55

of the people that I've contacted is a

28:57

young man named Billy Price. He

28:59

is paralyzed from the waist down

29:03

and he was trying to find decent

29:05

shoes to wear that

29:07

he could put on himself, and so he developed

29:10

Billy's foot Wear. And

29:12

his shoes actually have zippers

29:15

that zip off the whole top of

29:17

the shoe, so it's like a sardine can and

29:20

it opens up so people

29:23

that have a hard time zipping, or

29:26

people who wear orthotox I wear ankle

29:28

foot orthotics on both legs

29:30

because my feet drop and I'm

29:32

able to put my foot right into

29:34

the shoe and then fold the top over

29:36

and then zip it up, rather than

29:39

baking breaking down the back of the shoe

29:41

to put my foot in a shoe. So

29:44

it's a product that I found online. I

29:46

started using him. I called Billy

29:48

and said, hey, this is an awesome product. What

29:51

can I do to help get the word out.

29:54

I'm an individual with CIDP. I

29:56

know there's others such as myself and

29:59

a lot of us wear AFOs.

30:01

What can I do?

30:02

I said, do you have any brochures that I can take to

30:04

our meeting? And he's like, oh,

30:06

I can give you brochures. As a matter of fact,

30:09

not only will I give you brochures, but I'll

30:11

send some sample shoes, you

30:14

know. So just in meeting different

30:16

people along the way, I've found just

30:18

different products and things that I've used. So that's

30:20

been another passion of mine. So I another

30:23

way that I've taken a not so good

30:25

situation and the fact that this

30:28

disability's not going anywhere, and

30:30

rather than oh my gosh,

30:33

I've got this disability. My hands aren't

30:35

working, I can't do this, I can't do that, I'm

30:37

like, Okay, what can I do? And

30:40

so I'm taking my

30:43

disability and using it to help others.

30:46

It seems to me that that all kind of also plays

30:48

into another thing that you have given

30:50

yourself up to, which is you are

30:53

an author. Yes, and so tell

30:55

me about your books and how

30:58

they work to help those with CIDP

31:00

and other autoimmune conditions. Yes.

31:03

One of the things that occurred to

31:05

me, not only as an educator,

31:07

but as a parent and as a patient with CIDP

31:11

was I really didn't have anything

31:14

to tell my kids about the disease. So

31:18

I knew that there was a need. And

31:21

I just started talking with my daughter, who

31:24

has a degree in business, and

31:27

she's also been wonderful. She's done

31:29

all sorts of illustrations for my classrooms

31:32

over the years, and we

31:35

started talking and we actually

31:37

wrote a book, Breeze just

31:40

Like Me, and it's about Brie, who's a

31:42

turtle who doesn't understand.

31:45

All of a sudden, her shell starts

31:47

to swell and it cracks and

31:50

she ends up finding out that she's very

31:52

sick. And so it

31:55

came out in October, and we

31:57

used the turtle because the GBS

31:59

and CIDEP Foundation International

32:01

have adopted the turtle kind of

32:03

as their logo. I didn't

32:05

write it because I wanted to become rich and famous.

32:09

I wrote it because I knew there was a need, and

32:12

we donated the book to the foundation and

32:14

we wanted it to be available for parents

32:17

or children or families of individuals

32:20

that have CIDP. I think

32:23

that it has basically empowered my resilience

32:25

by allowing me to know

32:27

that I am a productive member of society

32:30

that just because I have this disease, I

32:33

still am able to teach others. I'm

32:35

able to help others with the disease

32:39

get through those rough days and

32:41

to help them navigate through the

32:44

system of insurance and whatnot

32:46

that I've had to navigate through, or

32:49

to help individuals who

32:52

might be having difficulties zipping their pants

32:54

and saying, hey, have you tried this? You

32:57

know?

32:57

So, I think it's just helped me.

32:59

All the way around to

33:02

help others, And that's kind

33:04

of been my main thing, is to know that I can

33:06

still do things and

33:08

feel like I've accomplished something.

33:11

I felt that when I was teaching full time,

33:14

but now I'm able to still feel that

33:16

accomplishment when I'm helping others

33:19

make their lives easier.

33:21

Yeah, it sounds like you know that idea of

33:23

resilience in terms of the value, you sort

33:25

of have found a new way

33:27

to contribute to life

33:30

into this world with your condition, right,

33:33

And how would you say that sharing

33:36

your CIDP story and

33:38

connecting with others because you mentioned about, you

33:40

know, all of your great work in terms of

33:42

connecting with the community, how

33:45

has that changed your outlook on

33:48

your own condition.

33:50

I'm a firm believer that things happen for a

33:52

reason, and by people

33:54

hearing my story, I hope that I can

33:56

shed a positivity for

33:59

them because I know people are

34:01

still being diagnosed

34:03

with this. Some people have had it as

34:05

long as I've had for twenty nine years. Other

34:08

people are just newly diagnosed.

34:10

And if I can just shed a little light and hope

34:13

into their dark and dreary bubble

34:16

that they might be in right now, then

34:19

I feel like I've done what I need to do. And

34:22

so I really think that that's part

34:24

of the reason why I have this disease is

34:26

so that I can help others deal

34:28

with what they're going through

34:31

on a daily basis.

34:33

And Julie, finally, to close

34:35

our conversation, what words

34:38

of advice or encouragement would

34:40

you share with others trying

34:42

to build the same kind of resilience along

34:45

their CIDP journey.

34:48

I would say, first of all, it's not a

34:50

disease you're going to die from. Second

34:53

of all, really get in touch

34:55

with what your body is feeling. And

34:57

it may be the most minute little

34:59

thing like can I make that motion to

35:02

snap my fingers? You

35:04

know, it may be something so tiny as

35:06

that as to something very big. Can

35:08

I lift up my leg? And then

35:10

also, don't give up hope. You can

35:12

be a productive member of society

35:15

and still have a chronic

35:17

disease.

35:18

You just have to.

35:19

Figure out what it is that you want to

35:21

do and how you want to handle your disease.

35:23

And it's okay to have those woe is me

35:26

moments, but don't stay

35:28

in those woe is me moments. Give

35:30

yourself a time, if it's one day, if

35:32

it's thirty minutes, if it's two days

35:34

a week, and then say, okay,

35:36

that's it. I'm done with the woe is me? What

35:39

can I do now and make it better?

35:42

Wonderful? Well,

35:45

Julie, I really appreciate

35:47

our time together and what you've been able to

35:49

share. I mean, your journey,

35:51

it's so inspiring and it's not done. I mean you

35:54

have plenty more to be able to give. I

35:56

mean you even think about, like, you know, what's the

35:58

next chapter for you?

36:00

Right? Yeah, it's I'm

36:02

just waiting for something exciting.

36:04

You know, who knows it.

36:05

Could happen right now, right tomorrow. Yeah,

36:09

you still have a great attitude and you

36:12

are a real inspiration. So thank you, so much

36:14

for our conversation today.

36:16

Thank you for the time. I appreciate it.

36:21

What an inspiring journey. Julie's

36:23

story from receiving her CIDP

36:26

diagnosis at a moment when life

36:28

with her children was just beginning to

36:31

her remarkable ability to find strength

36:33

and adversity illustrates

36:36

the incredible power of staying resilient.

36:39

Thank you for joining us for another episode of

36:41

Untold Stories. If you enjoyed

36:43

this, don't forget to come back every other

36:45

week for new episodes, and please

36:47

rate and review wherever you listen to

36:49

podcasts. Untold

36:52

Stories Life with a Severe Autoimmune Condition

36:55

is produced by Ruby's Studio from iHeartMedia

36:57

in partnership with Argenis and hosted by

37:00

me Martine Hackett. Our executive

37:02

producer is Molly Soosha. Our

37:04

EP of Post production is Matt Stillo, along

37:07

with Supervising producer Sierra Kaiser

37:09

and post producer Sierra Spreen. This

37:12

episode was written by Diana Davis.