June 12, 2024 • 37 mins
Julie is no stranger to adversity. Diagnosed with CIDP at the age of 28, in the midst of motherhood and a full-time job as a special education teacher, Julie quickly found herself balancing it all while managing the debilitating symptoms of her condition. As she started to find a sense of normalcy, life threw her another curveball: her husband was diagnosed with cancer and would now need Julie to care for him. Despite these challenges, Juile was unwilling to give up. She shifted gears, found strength within herself that she never believed possible, and turned her situation into an inspiring journey filled with creativity, passion, and hope for all.
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Speaker 1 (00:04):
Hi everyone, and welcome back for Season three of Untold
Stories Life with a Severe Autoimmune Condition. This podcast is
a production of Ruby Studio in partnership with Argenics, and
I'm your host, Martine Hackett. I'm an Associate professor and
Director of Public Health Programs at Hofstra University, and as
a researcher, educator, and public health professional, I've spent my
(00:26):
career studying the complex realities of health care disparities and
advocating to do something about them. On this podcast, I
speak with real people living with severe automune conditions like
mayasthenia gravis or MG and chronic inflammatory demielinating polyneuropathy otherwise
known as CIDP to help expand the conversation around these
(00:49):
shared experiences. Every person with a severe autoimmune condition has
a unique diagnosis, journey and stories of struggles, resilience and
heal help. We're here to shine a light on as
many of these amazing stories as we can, stressing the
power of community care and self advocacy as we embrace
(01:10):
this very emotional journey together. Every story shared in this
series underlines the physical challenges that are part of living
with an autoimmune condition as well as the importance of
connecting with a supportive community. In the case of those
living with chronic inflammatory demilinating polyneuropathy or CIDP, the emotional
(01:32):
toll can feel equally as unbearable. When you add the
stress and unpredictability of everyday life and progressive symptoms like
muscle tingling and weakness, it's easy to lose hope. To
overcome these obstacles, Julie had to develop a resilience that
is unmatched by others, which helps them to turn adversity
(01:54):
into a story of courage and strength that inspires us all.
Today's guest Julie is no stranger to turning battles into bridges.
Julie was diagnosed with CIDP at the age of twenty
eight while in the throes of motherhood. Parenting young children
with the progressive muscle weakness and motor dysfunction was no
(02:16):
easy feat, and just as she started to adjust, life
threw another curveball at her. She became the sole caregiver
for her husband, who was diagnosed with pancreatic cancer. Julie
found herself at a crossroads, give in or give more.
But as you'll soon hear Julie is not one to
(02:38):
give in. Through her CIDP journey, she began using her
creativity and passion for teaching in ways that she never imagined,
raising awareness, community and education. Hi, Julie, Hello Martin. So
(03:01):
good to meet you. And before we start with our
first question, I am seeing you and I see in
the background. Could you explain what you're doing right now
in addition to talking to me?
Speaker 2 (03:10):
Yes, Actually, in addition to talking to you right now,
I am receiving my IVIG therapy. I am able to
get home infusions, which is nice, but I do receive
IVIG every two weeks, and I have my full time
nurse here too, so for my infusion, so I'm not alone.
She ever sees and make sure that everything is okay
(03:31):
and that there's no problems before, during, and after the infusions.
So what a better time to talk about CIDP than now.
Speaker 1 (03:42):
IVIG or intravenous immuno globulin, is a treatment where a
person receives a transfusion of donor plasma that contains antibodies
that help manage diseases. While usually administered in hospitals, it
can also be given at home, a convenient option for
anyone looking to balance how much time they spent in
a hospital environment while managing their symptoms. Tell me what
(04:05):
your life was like before you received your CIDP diagnosis.
What were the main things that you were focused on
at that time?
Speaker 2 (04:14):
I would say, before I received my diagnosis, the main
things that I was focused on were my family. I
had a three year old daughter at the time. I
was pregnant, waiting for the birth of my son, and
enjoying being a grad student and finishing at my grad
work and starting my teaching career and education and just
(04:38):
enjoying family time, playing with kids, running around, doing the
things that I needed to do.
Speaker 1 (04:45):
Wow, and so young and so what were some of
those earliest symptoms?
Speaker 2 (04:50):
In nineteen ninety five, we noticed that I had just
gotten off of an airplane to visit my parents, and
I kind of had had my hips for kind of herding,
but my parents had noticed I had an awkward gait.
My dad was a pediatric radiologist and my mom was
a nurse, And when my dad had mentioned about my gate,
(05:12):
I had said, well, you know, I've noticed my hips
are kind of bothering me. But other than that, I
hadn't really noticed anything major and in my mind, I'm thinking, Oh,
it's just a post pregnancy.
Speaker 3 (05:22):
Waddle, no big deal.
Speaker 2 (05:24):
He suggested that I go see my primary care physician
when I got back to San Antonio and to follow
up and to get a referral to an orthopedic.
Speaker 1 (05:34):
So that's what I did. Wow, and that was the
beginning of your diagnosis journey.
Speaker 2 (05:40):
Yes, I was twenty eight years old and went to
see the primary care physician and at the time he
was asking me to stand on my toes, and I thought, well,
that's kind of weird, you know, who goes around and
stands on your toes? But it was more so like
when you're reaching up in the cabinet for a high shelf,
you know. How was I doing that? And I realized
(06:01):
that I was actually holding onto the counter most of
the time to do that. And then he asked me
to stand on my heels, and I thought, man, this
doctor's are really crazy. Now, who goes around standing on
their heels.
Speaker 3 (06:13):
He'd done some.
Speaker 2 (06:13):
Blood work and I actually got a phone call the
very next day from the doctor telling me that I
was not going to go see the orthopedic, but that
he had made me an appointment to see a neurologist
that afternoon, at one o'clock that afternoon. Yes, so the
world stopped. I knew at that point that I wasn't
(06:34):
dealing with an orthopedic issue, that something else major was
going on, because it's very rare that a doctor would
call and make an appointment for you, very rare that
the doctor himself would call you and pull you out
of teaching to come to the phone. And so I
knew at that point before I went to the doctor's
office that something.
Speaker 1 (06:54):
Big was up right. And so all of those things,
like you said, which were just extremely unusual for something
you thought like, hey, let me just get this checked
out because your dad recommended it.
Speaker 3 (07:04):
Right.
Speaker 1 (07:05):
So then what happened after that, after you went to
the neurologist.
Speaker 2 (07:09):
Well, I went to the neurologist, and it was my
CPK level, which is the muscle inflammation level, that actually
was what the doctor was concerned about, and it came
back a little elevated. And when it came back elevated,
that's what kind of sent the red flag up to
the primary care physician.
Speaker 1 (07:29):
And I know we're hearing some beeps and some whorrying
in the background.
Speaker 2 (07:33):
Can you tell us what that is, Oh, I'm taking
my blood pressure every so often, or that's my poll
that's beeping. I have to monitor my blood pressure for
the first hour every fifteen minutes. So that's just part
of my regimen for my IVIG. And I have my
full time nurse.
Speaker 1 (07:50):
Here too, so so you're good.
Speaker 3 (07:52):
So I'm not alone. Yes, I'm good.
Speaker 2 (07:54):
She oversees and make sure that everything is okay and
that there's no problems during and after the infusions.
Speaker 1 (08:02):
So much so that we can have this conversation right now.
Speaker 3 (08:05):
That's right.
Speaker 2 (08:06):
And I was lucky enough that the doctor that I saw,
he ran some tests and all of this is between
the end of Thanksgiving break and Christmas.
Speaker 1 (08:17):
Oh gosh.
Speaker 3 (08:18):
And before we.
Speaker 2 (08:19):
Left for Christmas break, I had emg's done, I had
a muscle biopsy done, I had spinal tap, all sorts
of different blood work, and the doctor basically had eliminated
several things. But he told me before Christmas that it
was either muscular dystrophy, muscular atrophy, multiple miloma, or chronic giambret,
(08:46):
which is what they called CIDP back twenty nine years ago.
At that point, it was waiting to see and get
the results back from the muscle biopsy.
Speaker 1 (08:59):
While CIDP in gon Beret syndrome or GBS, are both
conditions in which the immune system attacks its own nerves.
CIDP presents slower because of this. GBS is considered a
classic acute autoimmune neuropathy, while CIDP is a classic chronic
autoimmune neuropathy. It seems to me that that's a pretty
(09:23):
accelerated timeline to be able to get that type of diagnosis.
Speaker 2 (09:27):
Yes, very accelerated, and if you think back twenty nine
years ago, I mean, it's still a very rare disease.
It's one in one hundred thousand, so even back twenty
nine years ago, it may have been higher rates less diagnosis.
I was just in the right place at the right time,
and this doctor was smart enough and knew exactly what
(09:51):
he needed to do, so I immediately started on treatments.
One of the things the doctors did back then as
they started me on plasma poresis, which at that time
is all the doctors really knew what to do, and
they really didn't know how long to do plasma poresis.
Speaker 1 (10:14):
Like so many diagnosed with CIDP, a barrage of what
ifs and could bees forced Julie to build her resilience
from the very beginning. Despite being diagnosed twenty nine years ago,
misdiagnosis remains incredibly common, with up to fifty percent of
people experiencing nerve issues and symptoms that mimic other conditions.
Speaker 2 (10:38):
I felt like a guinea pig at that point because
the question was how do you feel? And usually you
go to your doctor and say, well, how am I
supposed to feel? And this was a situation where I
learned early on in my disease that I needed to
be in control and I really needed to tune into.
Speaker 3 (10:59):
How was I feeling.
Speaker 2 (11:01):
After the marathon rounds of plasma paresis. We then started
IVIG therapy, and I think I've calculated I've been on
IVIG therapy for probably over twenty years.
Speaker 1 (11:14):
And like you said, you had to become the expert
in terms of knowing what was happening, because it's like
they were developing these treatments as you were going through
your stages of this condition. When you did official diagnosis.
What emotions do you remember experiencing at that time?
Speaker 2 (11:33):
Oh, I remember being really angry, and I remember the
why does this have to happen?
Speaker 1 (11:39):
To me.
Speaker 3 (11:40):
You know, I have two young children. What am I.
Speaker 1 (11:43):
Supposed to do?
Speaker 2 (11:45):
How can I be a productive member of society and
deal with having this disease? And just uncertainty because it
was so new, and you know, I was fortunate, like
we said, that I had such a quick diagnosis, and
also fortunate that I had family that was in the
medical profession, so my dad could confer with other physicians
(12:09):
and make sure that I was on the right path.
Speaker 1 (12:12):
Yeah, I mean autoimmune conditions can alter the entire course
of an entire way of life. Did you face moments
when leaning on others was uncomfortable or unnerving?
Speaker 3 (12:25):
Yes.
Speaker 2 (12:26):
I have always been very independent, and I felt like
it was very difficult for me to lean on others.
I have very limited use of my hands, and oftentimes
when it comes to opening up say string cheese packets
or apple sauce containers or anything that have like the
(12:47):
little lips on the top, very difficult for me. And
often people would want to help me, and I would
not allow them to help me. In a way, that
was being stubborn, but in another way, it was me
trying to preserve what little dignity I could possibly have.
(13:07):
And I also had the philosophy of the next time
I need to open my string packet, my string cheese packet,
Martine's not going to be there, so how am I
going to open it? So it was more of trying
to find that fine line of I want to try myself.
I'll take some help if I absolutely need the help,
(13:29):
because whoever's helping me this time around may not be
there for next time, So what's another way that I
might be able to do it? And so that's kind
of how I really figured out how to navigate a
world with a disability.
Speaker 1 (13:45):
So really, you know, it sounds like you were You
learned to rely on people, but you also had to
learn how to rely on yourself in this with your condition.
Speaker 3 (13:54):
Yes, yes, definitely so.
Speaker 1 (13:59):
Julie, you're her husband was diagnosed with pancreatic cancer and
you became his sole caregiver. Yes, how did this impact
your perspective on your own journey and condition?
Speaker 2 (14:13):
That was a real hard time. My daughter was fifteen
and my son was ten. It was no longer worrying
about myself, but worrying about the kids and taking over
a big majority of their care, plus helping and taking
care of my husband. We had several different times where
(14:34):
he still continued to work for a while. I remember
him leaving work one day because he was supposed to
meet us for lunch and him getting lost and not
knowing where he was going. And thank goodness, we had
a bunch of college students who he worked with and
they were all waiting for us. So we had a
(14:55):
search party, Oh my gosh, and we sent all of
these college students out throughout San Antonio to find out
where he was because he didn't know where he was.
And luckily he was not too far away, but it
was a condition that he probably should not have been driving,
and so that was a real.
Speaker 3 (15:12):
Big aha moment.
Speaker 2 (15:15):
Having to take care of him was a difficult situation.
I remember having my appendix taken out on Father's Day weekend.
It was like on a Saturday or Sunday that I
had the appendix removed, and I was home by like
a Wednesday, and I remember my husband being out of
(15:35):
sorts because he was on high doses of pain meds
and all that. And I remember waking up and having
to put him in the shower to clean him up
because he thought he had gone to the toilet and hadn't,
and so I remember showering him, and here I am
postop and I'm supposed to be taking care of myself,
(15:56):
bending over cleaning him, getting him all straightened up, and
getting him back into bed, and you know, doing things
that I know I shouldn't have done, but I did.
Speaker 1 (16:08):
What I had to do. So many of those managing
life with CIDP are forced into situations that they never
imagine themselves. In Julie's incredible story is a reminder of
the importance of remaning resilient and how perspective truly can
change everything.
Speaker 2 (16:31):
I think the perspective was that knowing what it was
like to be a care provider and knowing that I
hoped that I wouldn't get to the point that I
would have to have somebody to care for me like that,
but also being realistic along the way, knowing that I'm
not there yet, but the future may be that, and
(16:54):
learning to just kind of let go of that and
say it's okay. You know, this disease is what it is.
You know, there's days where I'm angry, but I kind
of get over that real quick, and I look at
the positive of the disease and the way the positive
things that have happened because of the disease. And I
(17:17):
know that sounds just really odd.
Speaker 1 (17:19):
Yes, please explain.
Speaker 2 (17:21):
You know, I had to stop teaching early. I retired
early from teaching. My husband had passed away ten months
after his diagnosis goodness, so I had to continue working
full time to raise my kids. To have health insurance
was the big thing, because I had to have health
insurance to keep the costly expenses of my infusion and
(17:43):
medications I was taking. And so I just kind of
just went through the motion and got stuff done, and
I was exhausted, but my kids learned how to be
a team and we would work together, you know, getting
the housework done, doing all of the shopping, groceries, washing clothes,
all of that. I just remember having just a hard
(18:06):
time during that time, but somehow I made it through.
Then it came time where I was getting worse and
the doctor said, you know, you need to look at
do you want to spend time with your family or
do you want to get worse quicker? And I'm like, gee,
(18:30):
let me think about that for a second. And so
I said, does that mean you're signing the paperwork? She said, yes,
I'll sign your paperwork. And at the time, I was like,
Oh my gosh, what am I going to do? All
I know is teaching teaching special ed. What's going to
happen now? And as I let that go pretty quickly,
(18:53):
I realized that there was a big, great opening and
avenue for me to advocate and to not just be
an advocate for myself, but be an advocate for others
who are dealing with this disease. I've been able to
talk to medical professionals, pharmaceutical companies, all sorts of individuals
(19:14):
who have the disease who want to know more about
the disease, and it really has been a blessing in
that way that I am teaching. It's just a different
audience and it's a different subject.
Speaker 1 (19:27):
But that passion to be able and the ability and
the gift to be able to take this kind of
information and share it with others so that they can
use it is you know what You're still able to
do right right?
Speaker 2 (19:41):
And I think your perspective on things such as this
really helps and determine how things are going. If you're
real negative about things, And like I said, I do
have my woes me days, but I allow myself to
be a patient On a day like today, this is
my day. This is a day where I can say, oh,
(20:01):
you know, I'm just not feeling very good. This is
a day where I know that I'm not going to
be cooking dinner, so I plan ahead, I make something
easy for my son to cook, or we'll go get something,
and we just know.
Speaker 3 (20:15):
This is my drip day.
Speaker 2 (20:16):
This is my day where I can lay around and
be a patient and allow somebody to wait on me
and to help me and to do the things that
I need done. And then from then on tomorrow morning,
I'm like a little energizer bunny, and I'll go back
to doing the things that I need to do for
me and.
Speaker 3 (20:34):
For the household.
Speaker 2 (20:36):
But I allow this day every two weeks to be
my day to just have the excuse to feel yucky
and have the excuse to not want to do much.
Speaker 1 (20:50):
We'll be back with more untold stories after a quick break.
As a global immunology company committed to improving the lives
of people suffering from severe autoimmune conditions, Ourgenics is dedicated
to shining a light on resources that support the CIDP
(21:10):
or chronic inflammatory demilinating polyneuropathy community. Shining through CIDP is
a new website that aims to empower those living with
this rare condition in their families to create the space
needed for a more joyful life. Shining through CIDP features
real stories, tips on emotional self care, and new ideas
(21:30):
to help navigate the CIDP journey. For more information, visit
Shining throughcidp dot com. And now back to untold stories. So,
(21:51):
my gosh, Julie, you've seem you know, obviously this is
well earned, but so positive about your approach to your life.
But you also mentioned anger due to the unfairness of
your situation. Did that anger impact your relationships in any way?
Speaker 2 (22:08):
No, I think I kept most of my anger to myself,
and really, after my husband passed away, there was nobody
to be angry at except for him. And there's still
times that I am angry that he's not here having
to deal with some of the stuff I dealt with
with the kids. But overall, who am I going to
(22:28):
get angry at anymore? I mean, I'm twenty nine years
in it's time to be done with the anger, and
it's the acceptance and I've acted that I've had this disease.
I sometimes find myself getting a little angry when people
talk about remission, because remissions not necessarily everyone's vocabulary for CIDP.
(22:50):
Some people do go into remission, other people like myself.
It's a continuing battle, and it's continuing to get slowly
and progressively work. And I've already had the conversation with
my doctor, you know, will I end up in a
wheelchair one day? And my doctor has said yes, that
that most likely will happen.
Speaker 3 (23:12):
And so my goal is.
Speaker 2 (23:14):
To do whatever I can do and have as much
of a productive life as possible before I get to
that point. Now, that doesn't mean that I can't be
productive in a wheelchair. It just means that things will
change again and that my norm will be different. I've
had many experiences being in a wheelchair because as with CIDP,
(23:37):
I've had several different falls along the way where I've
broken a leg or broken a foot, you know, and
I've had to be in a wheelchair non weight bearing
because i don't have enough strength everre body strength to
hold my body up on crutches and that kind of thing.
Speaker 1 (23:52):
So I've had that.
Speaker 2 (23:52):
Little taste of wheelchair life, and as long as I
can put it on the back burner. I will, but
it also involves energy conservation on my behalf. So if
I'm tired, that means you take the buggy when you
go grocery shopping with no shame, right, no shame, You
drive it and you do what you need to do.
Speaker 3 (24:13):
You know.
Speaker 2 (24:13):
I still get people that will look at me when
I park in the handicap spots and I have handicap plates,
you know. And I've often said if somebody were to
come up to me and say, well, how come you're
parking in a handicapped spot, I would gladly say, well,
I have CIDP and say the whole thing out first,
because when you say chronic inflammatory demyelinating polyneuropathy.
Speaker 3 (24:35):
They're like what and yep.
Speaker 2 (24:38):
So I would gladly tell them that, and I would
glad to say I would be more than happy to
give you my disease if I could, but since I
can't and it's chronic, I'm parking in this spot. Have
a great DA yes, so it's not being handicapped at
Oh my god, I have to park in that handicap spot.
It's extra special parking, and I'm an extra special person
(25:01):
because hey, I'm one in one hundred thousand does it
work with the two? But you know one and a
hundred thousand, and so I'm going to take that space
and I'm going to use it if I need to use.
Speaker 1 (25:11):
It that day. That's right, that's right, and that's what
it's there for. Yes, So, Julie, you faced some moments
of having to explain yourself to others. Did you face
moments like that at work?
Speaker 3 (25:25):
Oh?
Speaker 2 (25:25):
Yes, definitely when I was at work. And it's really
amazing to me adults are worse than kids. You would
think being in a special education profession and going into
an educational building where there's supposed to be other educational professionals,
that they would be that as professional. I remember getting
(25:47):
into an elevator and I was wearing my ankle foot
orthotics and I also had hand splints on at the time,
and another educator on that elevator looked at me and said, wow,
you got hit hard. Wow, And I'm like oh, And
I turned around and looked at him and said you
should see the other guy what, because you know, I'm
(26:11):
just when he's dumbfounded at you know, what do you say?
Whereas kids? You see kids and they'll come up and
they'll say, or you can hear them whispering to their parents.
Speaker 3 (26:20):
Why does she have those on? What are those four?
Speaker 2 (26:23):
And I'll be right open. I'll go up to the
parent and I say, you know what, I'm so glad
that your child asked you about that. I don't mind
telling them if you're okay with me telling them what
these are and why I wear them.
Speaker 3 (26:34):
You know. And it got to the point too.
Speaker 2 (26:36):
I had an adult tell me when I was wearing
my AFOs that I could work with Santa Claus wearing
those things, and I thought, I'm not sure what he's meaning,
but I took it as a compliment. I said, oh, yeah,
Santa Claus is one of my best buddies. We work
well together, you know. And so you just kind of
try to make fun and light up the situations. And
(26:56):
from that point on, I knew people were looking at
my So what did I do? Instead of trying.
Speaker 3 (27:03):
To hide them?
Speaker 2 (27:04):
I went and bought the funniest, craziest look in knee
socks I could possibly find, and I gave people reason
to look at them.
Speaker 1 (27:12):
So my goodness. Yeah, So it seems like like you
said that the adults were sort of less well trained
than the children. Correct. So it sounds like facing moments,
you know, like that, Has that helped you to strengthen
your resilience when you look towards the future? Oh, I
think it has.
Speaker 2 (27:32):
I think it's mentally helping me prepare for that time.
One of the things that I've really enjoyed doing is
helping others who are experiencing issues with their disability. So
I'm always looking for adaptive devices and ways to adapt
my own items to make things easier, like I say,
(27:56):
to conserve energy. And what I have done and I'm
continuing to do is I've compiled a list of different
adaptive devices that I've used along the way, and I
found that there was a big need. I do a
lot of work with the GBSCIDP Foundation International, and we
have a symposium every couple of years, And during the symposium,
(28:18):
I noticed that people were saying, oh, I have such
a hard time zipping my pants and doing this and
doing that, And I'm like you are, Oh, well have
you heard of a zipper pool?
Speaker 3 (28:27):
And They're like what? So I knew that.
Speaker 2 (28:30):
There was a need. So then I've taken my passion
for finding devices and I've created a c and try
area with adaptive equipment. And I've even involved different individuals
and different vendors on my own who have adaptive clothing.
I've just gone out on my own and tried different things.
(28:53):
And one of the people that I've contacted is a
young man named Billy Price. He is paralyzed from the
waist down and he was trying to find decent shoes
to wear that he could put on himself, and so
he developed Billy's foot Wear. And his shoes actually have
(29:14):
zippers that zip off the whole top of the shoe,
so it's like a sardine can and it opens up
so people that have a hard time zipping, or people
who wear orthotox I wear ankle foot orthotics on both
legs because my feet drop and I'm able to put
my foot right into the shoe and then fold the
(29:36):
top over and then zip it up, rather than baking
breaking down the back of the shoe to put my
foot in a shoe. So it's a product that I
found online. I started using him. I called Billy and said, hey,
this is an awesome product. What can I do to
help get the word out. I'm an individual with CIDP.
I know there's others such as myself and a lot
(29:59):
of us wear AFOs.
Speaker 3 (30:01):
What can I do?
Speaker 2 (30:02):
I said, do you have any brochures that I can
take to our meeting? And he's like, oh, I can
give you brochures. As a matter of fact, not only
will I give you brochures, but I'll send some sample shoes,
you know. So just in meeting different people along the way,
I've found just different products and things that I've used.
So that's been another passion of mine. So I another
(30:23):
way that I've taken a not so good situation and
the fact that this disability's not going anywhere, and rather
than oh my gosh, I've got this disability. My hands
aren't working, I can't do this, I can't do that,
I'm like, Okay, what can I do? And so I'm
taking my disability and using it to help others.
Speaker 1 (30:46):
It seems to me that that all kind of also
plays into another thing that you have given yourself up to,
which is you are an author. Yes, and so tell
me about your books and how they work to help
those with CIDP and other autoimmune conditions. Yes.
Speaker 2 (31:03):
One of the things that occurred to me, not only
as an educator, but as a parent and as a
patient with CIDP was I really didn't have anything to
tell my kids about the disease. So I knew that
there was a need. And I just started talking with
my daughter, who has a degree in business, and she's
(31:27):
also been wonderful. She's done all sorts of illustrations for
my classrooms over the years, and we started talking and
we actually wrote a book, Breeze just Like Me, and
it's about Brie, who's a turtle who doesn't understand. All
of a sudden, her shell starts to swell and it
(31:48):
cracks and she ends up finding out that she's very sick.
And so it came out in October, and we used
the turtle because the GBS and CIDEP Foundation International have
adopted the turtle kind of as their logo. I didn't
write it because I wanted to become rich and famous.
(32:09):
I wrote it because I knew there was a need,
and we donated the book to the foundation and we
wanted it to be available for parents or children or
families of individuals that have CIDP. I think that it
has basically empowered my resilience by allowing me to know
that I am a productive member of society that just
(32:30):
because I have this disease, I still am able to
teach others. I'm able to help others with the disease
get through those rough days and to help them navigate
through the system of insurance and whatnot that I've had
to navigate through, or to help individuals who might be
(32:52):
having difficulties zipping their pants and saying, hey, have you
tried this? You know?
Speaker 3 (32:57):
So, I think it's just helped me.
Speaker 2 (32:59):
All the way around to help others, And that's kind
of been my main thing, is to know that I
can still do things and feel like I've accomplished something.
I felt that when I was teaching full time, but
now I'm able to still feel that accomplishment when I'm
helping others make their lives easier.
Speaker 1 (33:21):
Yeah, it sounds like you know that idea of resilience
in terms of the value, you sort of have found
a new way to contribute to life into this world
with your condition, right, And how would you say that
sharing your CIDP story and connecting with others because you
mentioned about, you know, all of your great work in
(33:41):
terms of connecting with the community, how has that changed
your outlook on your own condition.
Speaker 2 (33:50):
I'm a firm believer that things happen for a reason,
and by people hearing my story, I hope that I
can shed a positivity for them because I know people
are still being diagnosed with this. Some people have had
it as long as I've had for twenty nine years.
Other people are just newly diagnosed. And if I can
(34:11):
just shed a little light and hope into their dark
and dreary bubble that they might be in right now,
then I feel like I've done what I need to do.
And so I really think that that's part of the
reason why I have this disease is so that I
can help others deal with what they're going through on
(34:31):
a daily basis.
Speaker 1 (34:33):
And Julie, finally, to close our conversation, what words of
advice or encouragement would you share with others trying to
build the same kind of resilience along their CIDP journey.
Speaker 2 (34:48):
I would say, first of all, it's not a disease
you're going to die from. Second of all, really get
in touch with what your body is feeling. And it
may be the most minute little thing like can I
make that motion to snap my fingers? You know, it
may be something so tiny as that as to something
very big. Can I lift up my leg? And then also,
(35:10):
don't give up hope. You can be a productive member
of society and still have a chronic disease.
Speaker 1 (35:18):
You just have to.
Speaker 2 (35:19):
Figure out what it is that you want to do
and how you want to handle your disease. And it's
okay to have those woe is me moments, but don't
stay in those woe is me moments. Give yourself a time,
if it's one day, if it's thirty minutes, if it's
two days a week, and then say, okay, that's it.
I'm done with the woe is me? What can I
(35:39):
do now and make it better?
Speaker 1 (35:42):
Wonderful? Well, Julie, I really appreciate our time together and
what you've been able to share. I mean, your journey,
it's so inspiring and it's not done. I mean you
have plenty more to be able to give. I mean
you even think about, like, you know, what's the next
chapter for you?
Speaker 2 (36:00):
Right? Yeah, it's I'm just waiting for something exciting.
Speaker 3 (36:04):
You know, who knows it.
Speaker 1 (36:05):
Could happen right now, right tomorrow. Yeah, you still have
a great attitude and you are a real inspiration. So
thank you, so much for our conversation today.
Speaker 3 (36:16):
Thank you for the time. I appreciate it.
Speaker 1 (36:21):
What an inspiring journey. Julie's story from receiving her CIDP
diagnosis at a moment when life with her children was
just beginning to her remarkable ability to find strength and
adversity illustrates the incredible power of staying resilient. Thank you
for joining us for another episode of Untold Stories. If
(36:42):
you enjoyed this, don't forget to come back every other
week for new episodes, and please rate and review wherever
you listen to podcasts. Untold Stories Life with a Severe
Autoimmune Condition is produced by Ruby's Studio from iHeartMedia in
partnership with Argenis and hosted by me Martine Hackett. Our
executive producer is Molly Soosha. Our EP of Post production
(37:05):
is Matt Stillo, along with Supervising producer Sierra Kaiser and
post producer Sierra Spreen. This episode was written by Diana Davis.
Hi everyone, and welcome back for Season three of Untold
Stories Life with a Severe Autoimmune Condition. This podcast is
a production of Ruby Studio in partnership with Argenics, and
I'm your host, Martine Hackett. I'm an Associate professor and
Director of Public Health Programs at Hofstra University, and as
a researcher, educator, and public health professional, I've spent my
(00:26):
career studying the complex realities of health care disparities and
advocating to do something about them. On this podcast, I
speak with real people living with severe automune conditions like
mayasthenia gravis or MG and chronic inflammatory demielinating polyneuropathy otherwise
known as CIDP to help expand the conversation around these
(00:49):
shared experiences. Every person with a severe autoimmune condition has
a unique diagnosis, journey and stories of struggles, resilience and
heal help. We're here to shine a light on as
many of these amazing stories as we can, stressing the
power of community care and self advocacy as we embrace
(01:10):
this very emotional journey together. Every story shared in this
series underlines the physical challenges that are part of living
with an autoimmune condition as well as the importance of
connecting with a supportive community. In the case of those
living with chronic inflammatory demilinating polyneuropathy or CIDP, the emotional
(01:32):
toll can feel equally as unbearable. When you add the
stress and unpredictability of everyday life and progressive symptoms like
muscle tingling and weakness, it's easy to lose hope. To
overcome these obstacles, Julie had to develop a resilience that
is unmatched by others, which helps them to turn adversity
(01:54):
into a story of courage and strength that inspires us all.
Today's guest Julie is no stranger to turning battles into bridges.
Julie was diagnosed with CIDP at the age of twenty
eight while in the throes of motherhood. Parenting young children
with the progressive muscle weakness and motor dysfunction was no
(02:16):
easy feat, and just as she started to adjust, life
threw another curveball at her. She became the sole caregiver
for her husband, who was diagnosed with pancreatic cancer. Julie
found herself at a crossroads, give in or give more.
But as you'll soon hear Julie is not one to
(02:38):
give in. Through her CIDP journey, she began using her
creativity and passion for teaching in ways that she never imagined,
raising awareness, community and education. Hi, Julie, Hello Martin. So
(03:01):
good to meet you. And before we start with our
first question, I am seeing you and I see in
the background. Could you explain what you're doing right now
in addition to talking to me?
Speaker 2 (03:10):
Yes, Actually, in addition to talking to you right now,
I am receiving my IVIG therapy. I am able to
get home infusions, which is nice, but I do receive
IVIG every two weeks, and I have my full time
nurse here too, so for my infusion, so I'm not alone.
She ever sees and make sure that everything is okay
(03:31):
and that there's no problems before, during, and after the infusions.
So what a better time to talk about CIDP than now.
Speaker 1 (03:42):
IVIG or intravenous immuno globulin, is a treatment where a
person receives a transfusion of donor plasma that contains antibodies
that help manage diseases. While usually administered in hospitals, it
can also be given at home, a convenient option for
anyone looking to balance how much time they spent in
a hospital environment while managing their symptoms. Tell me what
(04:05):
your life was like before you received your CIDP diagnosis.
What were the main things that you were focused on
at that time?
Speaker 2 (04:14):
I would say, before I received my diagnosis, the main
things that I was focused on were my family. I
had a three year old daughter at the time. I
was pregnant, waiting for the birth of my son, and
enjoying being a grad student and finishing at my grad
work and starting my teaching career and education and just
(04:38):
enjoying family time, playing with kids, running around, doing the
things that I needed to do.
Speaker 1 (04:45):
Wow, and so young and so what were some of
those earliest symptoms?
Speaker 2 (04:50):
In nineteen ninety five, we noticed that I had just
gotten off of an airplane to visit my parents, and
I kind of had had my hips for kind of herding,
but my parents had noticed I had an awkward gait.
My dad was a pediatric radiologist and my mom was
a nurse, And when my dad had mentioned about my gate,
(05:12):
I had said, well, you know, I've noticed my hips
are kind of bothering me. But other than that, I
hadn't really noticed anything major and in my mind, I'm thinking, Oh,
it's just a post pregnancy.
Speaker 3 (05:22):
Waddle, no big deal.
Speaker 2 (05:24):
He suggested that I go see my primary care physician
when I got back to San Antonio and to follow
up and to get a referral to an orthopedic.
Speaker 1 (05:34):
So that's what I did. Wow, and that was the
beginning of your diagnosis journey.
Speaker 2 (05:40):
Yes, I was twenty eight years old and went to
see the primary care physician and at the time he
was asking me to stand on my toes, and I thought, well,
that's kind of weird, you know, who goes around and
stands on your toes? But it was more so like
when you're reaching up in the cabinet for a high shelf,
you know. How was I doing that? And I realized
(06:01):
that I was actually holding onto the counter most of
the time to do that. And then he asked me
to stand on my heels, and I thought, man, this
doctor's are really crazy. Now, who goes around standing on
their heels.
Speaker 3 (06:13):
He'd done some.
Speaker 2 (06:13):
Blood work and I actually got a phone call the
very next day from the doctor telling me that I
was not going to go see the orthopedic, but that
he had made me an appointment to see a neurologist
that afternoon, at one o'clock that afternoon. Yes, so the
world stopped. I knew at that point that I wasn't
(06:34):
dealing with an orthopedic issue, that something else major was
going on, because it's very rare that a doctor would
call and make an appointment for you, very rare that
the doctor himself would call you and pull you out
of teaching to come to the phone. And so I
knew at that point before I went to the doctor's
office that something.
Speaker 1 (06:54):
Big was up right. And so all of those things,
like you said, which were just extremely unusual for something
you thought like, hey, let me just get this checked
out because your dad recommended it.
Speaker 3 (07:04):
Right.
Speaker 1 (07:05):
So then what happened after that, after you went to
the neurologist.
Speaker 2 (07:09):
Well, I went to the neurologist, and it was my
CPK level, which is the muscle inflammation level, that actually
was what the doctor was concerned about, and it came
back a little elevated. And when it came back elevated,
that's what kind of sent the red flag up to
the primary care physician.
Speaker 1 (07:29):
And I know we're hearing some beeps and some whorrying
in the background.
Speaker 2 (07:33):
Can you tell us what that is, Oh, I'm taking
my blood pressure every so often, or that's my poll
that's beeping. I have to monitor my blood pressure for
the first hour every fifteen minutes. So that's just part
of my regimen for my IVIG. And I have my
full time nurse.
Speaker 1 (07:50):
Here too, so so you're good.
Speaker 3 (07:52):
So I'm not alone. Yes, I'm good.
Speaker 2 (07:54):
She oversees and make sure that everything is okay and
that there's no problems during and after the infusions.
Speaker 1 (08:02):
So much so that we can have this conversation right now.
Speaker 3 (08:05):
That's right.
Speaker 2 (08:06):
And I was lucky enough that the doctor that I saw,
he ran some tests and all of this is between
the end of Thanksgiving break and Christmas.
Speaker 1 (08:17):
Oh gosh.
Speaker 3 (08:18):
And before we.
Speaker 2 (08:19):
Left for Christmas break, I had emg's done, I had
a muscle biopsy done, I had spinal tap, all sorts
of different blood work, and the doctor basically had eliminated
several things. But he told me before Christmas that it
was either muscular dystrophy, muscular atrophy, multiple miloma, or chronic giambret,
(08:46):
which is what they called CIDP back twenty nine years ago.
At that point, it was waiting to see and get
the results back from the muscle biopsy.
Speaker 1 (08:59):
While CIDP in gon Beret syndrome or GBS, are both
conditions in which the immune system attacks its own nerves.
CIDP presents slower because of this. GBS is considered a
classic acute autoimmune neuropathy, while CIDP is a classic chronic
autoimmune neuropathy. It seems to me that that's a pretty
(09:23):
accelerated timeline to be able to get that type of diagnosis.
Speaker 2 (09:27):
Yes, very accelerated, and if you think back twenty nine
years ago, I mean, it's still a very rare disease.
It's one in one hundred thousand, so even back twenty
nine years ago, it may have been higher rates less diagnosis.
I was just in the right place at the right time,
and this doctor was smart enough and knew exactly what
(09:51):
he needed to do, so I immediately started on treatments.
One of the things the doctors did back then as
they started me on plasma poresis, which at that time
is all the doctors really knew what to do, and
they really didn't know how long to do plasma poresis.
Speaker 1 (10:14):
Like so many diagnosed with CIDP, a barrage of what
ifs and could bees forced Julie to build her resilience
from the very beginning. Despite being diagnosed twenty nine years ago,
misdiagnosis remains incredibly common, with up to fifty percent of
people experiencing nerve issues and symptoms that mimic other conditions.
Speaker 2 (10:38):
I felt like a guinea pig at that point because
the question was how do you feel? And usually you
go to your doctor and say, well, how am I
supposed to feel? And this was a situation where I
learned early on in my disease that I needed to
be in control and I really needed to tune into.
Speaker 3 (10:59):
How was I feeling.
Speaker 2 (11:01):
After the marathon rounds of plasma paresis. We then started
IVIG therapy, and I think I've calculated I've been on
IVIG therapy for probably over twenty years.
Speaker 1 (11:14):
And like you said, you had to become the expert
in terms of knowing what was happening, because it's like
they were developing these treatments as you were going through
your stages of this condition. When you did official diagnosis.
What emotions do you remember experiencing at that time?
Speaker 2 (11:33):
Oh, I remember being really angry, and I remember the
why does this have to happen?
Speaker 1 (11:39):
To me.
Speaker 3 (11:40):
You know, I have two young children. What am I.
Speaker 1 (11:43):
Supposed to do?
Speaker 2 (11:45):
How can I be a productive member of society and
deal with having this disease? And just uncertainty because it
was so new, and you know, I was fortunate, like
we said, that I had such a quick diagnosis, and
also fortunate that I had family that was in the
medical profession, so my dad could confer with other physicians
(12:09):
and make sure that I was on the right path.
Speaker 1 (12:12):
Yeah, I mean autoimmune conditions can alter the entire course
of an entire way of life. Did you face moments
when leaning on others was uncomfortable or unnerving?
Speaker 3 (12:25):
Yes.
Speaker 2 (12:26):
I have always been very independent, and I felt like
it was very difficult for me to lean on others.
I have very limited use of my hands, and oftentimes
when it comes to opening up say string cheese packets
or apple sauce containers or anything that have like the
(12:47):
little lips on the top, very difficult for me. And
often people would want to help me, and I would
not allow them to help me. In a way, that
was being stubborn, but in another way, it was me
trying to preserve what little dignity I could possibly have.
(13:07):
And I also had the philosophy of the next time
I need to open my string packet, my string cheese packet,
Martine's not going to be there, so how am I
going to open it? So it was more of trying
to find that fine line of I want to try myself.
I'll take some help if I absolutely need the help,
(13:29):
because whoever's helping me this time around may not be
there for next time, So what's another way that I
might be able to do it? And so that's kind
of how I really figured out how to navigate a
world with a disability.
Speaker 1 (13:45):
So really, you know, it sounds like you were You
learned to rely on people, but you also had to
learn how to rely on yourself in this with your condition.
Speaker 3 (13:54):
Yes, yes, definitely so.
Speaker 1 (13:59):
Julie, you're her husband was diagnosed with pancreatic cancer and
you became his sole caregiver. Yes, how did this impact
your perspective on your own journey and condition?
Speaker 2 (14:13):
That was a real hard time. My daughter was fifteen
and my son was ten. It was no longer worrying
about myself, but worrying about the kids and taking over
a big majority of their care, plus helping and taking
care of my husband. We had several different times where
(14:34):
he still continued to work for a while. I remember
him leaving work one day because he was supposed to
meet us for lunch and him getting lost and not
knowing where he was going. And thank goodness, we had
a bunch of college students who he worked with and
they were all waiting for us. So we had a
(14:55):
search party, Oh my gosh, and we sent all of
these college students out throughout San Antonio to find out
where he was because he didn't know where he was.
And luckily he was not too far away, but it
was a condition that he probably should not have been driving,
and so that was a real.
Speaker 3 (15:12):
Big aha moment.
Speaker 2 (15:15):
Having to take care of him was a difficult situation.
I remember having my appendix taken out on Father's Day weekend.
It was like on a Saturday or Sunday that I
had the appendix removed, and I was home by like
a Wednesday, and I remember my husband being out of
(15:35):
sorts because he was on high doses of pain meds
and all that. And I remember waking up and having
to put him in the shower to clean him up
because he thought he had gone to the toilet and hadn't,
and so I remember showering him, and here I am
postop and I'm supposed to be taking care of myself,
(15:56):
bending over cleaning him, getting him all straightened up, and
getting him back into bed, and you know, doing things
that I know I shouldn't have done, but I did.
Speaker 1 (16:08):
What I had to do. So many of those managing
life with CIDP are forced into situations that they never
imagine themselves. In Julie's incredible story is a reminder of
the importance of remaning resilient and how perspective truly can
change everything.
Speaker 2 (16:31):
I think the perspective was that knowing what it was
like to be a care provider and knowing that I
hoped that I wouldn't get to the point that I
would have to have somebody to care for me like that,
but also being realistic along the way, knowing that I'm
not there yet, but the future may be that, and
(16:54):
learning to just kind of let go of that and
say it's okay. You know, this disease is what it is.
You know, there's days where I'm angry, but I kind
of get over that real quick, and I look at
the positive of the disease and the way the positive
things that have happened because of the disease. And I
(17:17):
know that sounds just really odd.
Speaker 1 (17:19):
Yes, please explain.
Speaker 2 (17:21):
You know, I had to stop teaching early. I retired
early from teaching. My husband had passed away ten months
after his diagnosis goodness, so I had to continue working
full time to raise my kids. To have health insurance
was the big thing, because I had to have health
insurance to keep the costly expenses of my infusion and
(17:43):
medications I was taking. And so I just kind of
just went through the motion and got stuff done, and
I was exhausted, but my kids learned how to be
a team and we would work together, you know, getting
the housework done, doing all of the shopping, groceries, washing clothes,
all of that. I just remember having just a hard
(18:06):
time during that time, but somehow I made it through.
Then it came time where I was getting worse and
the doctor said, you know, you need to look at
do you want to spend time with your family or
do you want to get worse quicker? And I'm like, gee,
(18:30):
let me think about that for a second. And so
I said, does that mean you're signing the paperwork? She said, yes,
I'll sign your paperwork. And at the time, I was like,
Oh my gosh, what am I going to do? All
I know is teaching teaching special ed. What's going to
happen now? And as I let that go pretty quickly,
(18:53):
I realized that there was a big, great opening and
avenue for me to advocate and to not just be
an advocate for myself, but be an advocate for others
who are dealing with this disease. I've been able to
talk to medical professionals, pharmaceutical companies, all sorts of individuals
(19:14):
who have the disease who want to know more about
the disease, and it really has been a blessing in
that way that I am teaching. It's just a different
audience and it's a different subject.
Speaker 1 (19:27):
But that passion to be able and the ability and
the gift to be able to take this kind of
information and share it with others so that they can
use it is you know what You're still able to
do right right?
Speaker 2 (19:41):
And I think your perspective on things such as this
really helps and determine how things are going. If you're
real negative about things, And like I said, I do
have my woes me days, but I allow myself to
be a patient On a day like today, this is
my day. This is a day where I can say, oh,
(20:01):
you know, I'm just not feeling very good. This is
a day where I know that I'm not going to
be cooking dinner, so I plan ahead, I make something
easy for my son to cook, or we'll go get something,
and we just know.
Speaker 3 (20:15):
This is my drip day.
Speaker 2 (20:16):
This is my day where I can lay around and
be a patient and allow somebody to wait on me
and to help me and to do the things that
I need done. And then from then on tomorrow morning,
I'm like a little energizer bunny, and I'll go back
to doing the things that I need to do for
me and.
Speaker 3 (20:34):
For the household.
Speaker 2 (20:36):
But I allow this day every two weeks to be
my day to just have the excuse to feel yucky
and have the excuse to not want to do much.
Speaker 1 (20:50):
We'll be back with more untold stories after a quick break.
As a global immunology company committed to improving the lives
of people suffering from severe autoimmune conditions, Ourgenics is dedicated
to shining a light on resources that support the CIDP
(21:10):
or chronic inflammatory demilinating polyneuropathy community. Shining through CIDP is
a new website that aims to empower those living with
this rare condition in their families to create the space
needed for a more joyful life. Shining through CIDP features
real stories, tips on emotional self care, and new ideas
(21:30):
to help navigate the CIDP journey. For more information, visit
Shining throughcidp dot com. And now back to untold stories. So,
(21:51):
my gosh, Julie, you've seem you know, obviously this is
well earned, but so positive about your approach to your life.
But you also mentioned anger due to the unfairness of
your situation. Did that anger impact your relationships in any way?
Speaker 2 (22:08):
No, I think I kept most of my anger to myself,
and really, after my husband passed away, there was nobody
to be angry at except for him. And there's still
times that I am angry that he's not here having
to deal with some of the stuff I dealt with
with the kids. But overall, who am I going to
(22:28):
get angry at anymore? I mean, I'm twenty nine years
in it's time to be done with the anger, and
it's the acceptance and I've acted that I've had this disease.
I sometimes find myself getting a little angry when people
talk about remission, because remissions not necessarily everyone's vocabulary for CIDP.
(22:50):
Some people do go into remission, other people like myself.
It's a continuing battle, and it's continuing to get slowly
and progressively work. And I've already had the conversation with
my doctor, you know, will I end up in a
wheelchair one day? And my doctor has said yes, that
that most likely will happen.
Speaker 3 (23:12):
And so my goal is.
Speaker 2 (23:14):
To do whatever I can do and have as much
of a productive life as possible before I get to
that point. Now, that doesn't mean that I can't be
productive in a wheelchair. It just means that things will
change again and that my norm will be different. I've
had many experiences being in a wheelchair because as with CIDP,
(23:37):
I've had several different falls along the way where I've
broken a leg or broken a foot, you know, and
I've had to be in a wheelchair non weight bearing
because i don't have enough strength everre body strength to
hold my body up on crutches and that kind of thing.
Speaker 1 (23:52):
So I've had that.
Speaker 2 (23:52):
Little taste of wheelchair life, and as long as I
can put it on the back burner. I will, but
it also involves energy conservation on my behalf. So if
I'm tired, that means you take the buggy when you
go grocery shopping with no shame, right, no shame, You
drive it and you do what you need to do.
Speaker 3 (24:13):
You know.
Speaker 2 (24:13):
I still get people that will look at me when
I park in the handicap spots and I have handicap plates,
you know. And I've often said if somebody were to
come up to me and say, well, how come you're
parking in a handicapped spot, I would gladly say, well,
I have CIDP and say the whole thing out first,
because when you say chronic inflammatory demyelinating polyneuropathy.
Speaker 3 (24:35):
They're like what and yep.
Speaker 2 (24:38):
So I would gladly tell them that, and I would
glad to say I would be more than happy to
give you my disease if I could, but since I
can't and it's chronic, I'm parking in this spot. Have
a great DA yes, so it's not being handicapped at
Oh my god, I have to park in that handicap spot.
It's extra special parking, and I'm an extra special person
(25:01):
because hey, I'm one in one hundred thousand does it
work with the two? But you know one and a
hundred thousand, and so I'm going to take that space
and I'm going to use it if I need to use.
Speaker 1 (25:11):
It that day. That's right, that's right, and that's what
it's there for. Yes, So, Julie, you faced some moments
of having to explain yourself to others. Did you face
moments like that at work?
Speaker 3 (25:25):
Oh?
Speaker 2 (25:25):
Yes, definitely when I was at work. And it's really
amazing to me adults are worse than kids. You would
think being in a special education profession and going into
an educational building where there's supposed to be other educational professionals,
that they would be that as professional. I remember getting
(25:47):
into an elevator and I was wearing my ankle foot
orthotics and I also had hand splints on at the time,
and another educator on that elevator looked at me and said, wow,
you got hit hard. Wow, And I'm like oh, And
I turned around and looked at him and said you
should see the other guy what, because you know, I'm
(26:11):
just when he's dumbfounded at you know, what do you say?
Whereas kids? You see kids and they'll come up and
they'll say, or you can hear them whispering to their parents.
Speaker 3 (26:20):
Why does she have those on? What are those four?
Speaker 2 (26:23):
And I'll be right open. I'll go up to the
parent and I say, you know what, I'm so glad
that your child asked you about that. I don't mind
telling them if you're okay with me telling them what
these are and why I wear them.
Speaker 3 (26:34):
You know. And it got to the point too.
Speaker 2 (26:36):
I had an adult tell me when I was wearing
my AFOs that I could work with Santa Claus wearing
those things, and I thought, I'm not sure what he's meaning,
but I took it as a compliment. I said, oh, yeah,
Santa Claus is one of my best buddies. We work
well together, you know. And so you just kind of
try to make fun and light up the situations. And
(26:56):
from that point on, I knew people were looking at
my So what did I do? Instead of trying.
Speaker 3 (27:03):
To hide them?
Speaker 2 (27:04):
I went and bought the funniest, craziest look in knee
socks I could possibly find, and I gave people reason
to look at them.
Speaker 1 (27:12):
So my goodness. Yeah, So it seems like like you
said that the adults were sort of less well trained
than the children. Correct. So it sounds like facing moments,
you know, like that, Has that helped you to strengthen
your resilience when you look towards the future? Oh, I
think it has.
Speaker 2 (27:32):
I think it's mentally helping me prepare for that time.
One of the things that I've really enjoyed doing is
helping others who are experiencing issues with their disability. So
I'm always looking for adaptive devices and ways to adapt
my own items to make things easier, like I say,
(27:56):
to conserve energy. And what I have done and I'm
continuing to do is I've compiled a list of different
adaptive devices that I've used along the way, and I
found that there was a big need. I do a
lot of work with the GBSCIDP Foundation International, and we
have a symposium every couple of years, And during the symposium,
(28:18):
I noticed that people were saying, oh, I have such
a hard time zipping my pants and doing this and
doing that, And I'm like you are, Oh, well have
you heard of a zipper pool?
Speaker 3 (28:27):
And They're like what? So I knew that.
Speaker 2 (28:30):
There was a need. So then I've taken my passion
for finding devices and I've created a c and try
area with adaptive equipment. And I've even involved different individuals
and different vendors on my own who have adaptive clothing.
I've just gone out on my own and tried different things.
(28:53):
And one of the people that I've contacted is a
young man named Billy Price. He is paralyzed from the
waist down and he was trying to find decent shoes
to wear that he could put on himself, and so
he developed Billy's foot Wear. And his shoes actually have
(29:14):
zippers that zip off the whole top of the shoe,
so it's like a sardine can and it opens up
so people that have a hard time zipping, or people
who wear orthotox I wear ankle foot orthotics on both
legs because my feet drop and I'm able to put
my foot right into the shoe and then fold the
(29:36):
top over and then zip it up, rather than baking
breaking down the back of the shoe to put my
foot in a shoe. So it's a product that I
found online. I started using him. I called Billy and said, hey,
this is an awesome product. What can I do to
help get the word out. I'm an individual with CIDP.
I know there's others such as myself and a lot
(29:59):
of us wear AFOs.
Speaker 3 (30:01):
What can I do?
Speaker 2 (30:02):
I said, do you have any brochures that I can
take to our meeting? And he's like, oh, I can
give you brochures. As a matter of fact, not only
will I give you brochures, but I'll send some sample shoes,
you know. So just in meeting different people along the way,
I've found just different products and things that I've used.
So that's been another passion of mine. So I another
(30:23):
way that I've taken a not so good situation and
the fact that this disability's not going anywhere, and rather
than oh my gosh, I've got this disability. My hands
aren't working, I can't do this, I can't do that,
I'm like, Okay, what can I do? And so I'm
taking my disability and using it to help others.
Speaker 1 (30:46):
It seems to me that that all kind of also
plays into another thing that you have given yourself up to,
which is you are an author. Yes, and so tell
me about your books and how they work to help
those with CIDP and other autoimmune conditions. Yes.
Speaker 2 (31:03):
One of the things that occurred to me, not only
as an educator, but as a parent and as a
patient with CIDP was I really didn't have anything to
tell my kids about the disease. So I knew that
there was a need. And I just started talking with
my daughter, who has a degree in business, and she's
(31:27):
also been wonderful. She's done all sorts of illustrations for
my classrooms over the years, and we started talking and
we actually wrote a book, Breeze just Like Me, and
it's about Brie, who's a turtle who doesn't understand. All
of a sudden, her shell starts to swell and it
(31:48):
cracks and she ends up finding out that she's very sick.
And so it came out in October, and we used
the turtle because the GBS and CIDEP Foundation International have
adopted the turtle kind of as their logo. I didn't
write it because I wanted to become rich and famous.
(32:09):
I wrote it because I knew there was a need,
and we donated the book to the foundation and we
wanted it to be available for parents or children or
families of individuals that have CIDP. I think that it
has basically empowered my resilience by allowing me to know
that I am a productive member of society that just
(32:30):
because I have this disease, I still am able to
teach others. I'm able to help others with the disease
get through those rough days and to help them navigate
through the system of insurance and whatnot that I've had
to navigate through, or to help individuals who might be
(32:52):
having difficulties zipping their pants and saying, hey, have you
tried this? You know?
Speaker 3 (32:57):
So, I think it's just helped me.
Speaker 2 (32:59):
All the way around to help others, And that's kind
of been my main thing, is to know that I
can still do things and feel like I've accomplished something.
I felt that when I was teaching full time, but
now I'm able to still feel that accomplishment when I'm
helping others make their lives easier.
Speaker 1 (33:21):
Yeah, it sounds like you know that idea of resilience
in terms of the value, you sort of have found
a new way to contribute to life into this world
with your condition, right, And how would you say that
sharing your CIDP story and connecting with others because you
mentioned about, you know, all of your great work in
(33:41):
terms of connecting with the community, how has that changed
your outlook on your own condition.
Speaker 2 (33:50):
I'm a firm believer that things happen for a reason,
and by people hearing my story, I hope that I
can shed a positivity for them because I know people
are still being diagnosed with this. Some people have had
it as long as I've had for twenty nine years.
Other people are just newly diagnosed. And if I can
(34:11):
just shed a little light and hope into their dark
and dreary bubble that they might be in right now,
then I feel like I've done what I need to do.
And so I really think that that's part of the
reason why I have this disease is so that I
can help others deal with what they're going through on
(34:31):
a daily basis.
Speaker 1 (34:33):
And Julie, finally, to close our conversation, what words of
advice or encouragement would you share with others trying to
build the same kind of resilience along their CIDP journey.
Speaker 2 (34:48):
I would say, first of all, it's not a disease
you're going to die from. Second of all, really get
in touch with what your body is feeling. And it
may be the most minute little thing like can I
make that motion to snap my fingers? You know, it
may be something so tiny as that as to something
very big. Can I lift up my leg? And then also,
(35:10):
don't give up hope. You can be a productive member
of society and still have a chronic disease.
Speaker 1 (35:18):
You just have to.
Speaker 2 (35:19):
Figure out what it is that you want to do
and how you want to handle your disease. And it's
okay to have those woe is me moments, but don't
stay in those woe is me moments. Give yourself a time,
if it's one day, if it's thirty minutes, if it's
two days a week, and then say, okay, that's it.
I'm done with the woe is me? What can I
(35:39):
do now and make it better?
Speaker 1 (35:42):
Wonderful? Well, Julie, I really appreciate our time together and
what you've been able to share. I mean, your journey,
it's so inspiring and it's not done. I mean you
have plenty more to be able to give. I mean
you even think about, like, you know, what's the next
chapter for you?
Speaker 2 (36:00):
Right? Yeah, it's I'm just waiting for something exciting.
Speaker 3 (36:04):
You know, who knows it.
Speaker 1 (36:05):
Could happen right now, right tomorrow. Yeah, you still have
a great attitude and you are a real inspiration. So
thank you, so much for our conversation today.
Speaker 3 (36:16):
Thank you for the time. I appreciate it.
Speaker 1 (36:21):
What an inspiring journey. Julie's story from receiving her CIDP
diagnosis at a moment when life with her children was
just beginning to her remarkable ability to find strength and
adversity illustrates the incredible power of staying resilient. Thank you
for joining us for another episode of Untold Stories. If
(36:42):
you enjoyed this, don't forget to come back every other
week for new episodes, and please rate and review wherever
you listen to podcasts. Untold Stories Life with a Severe
Autoimmune Condition is produced by Ruby's Studio from iHeartMedia in
partnership with Argenis and hosted by me Martine Hackett. Our
executive producer is Molly Soosha. Our EP of Post production
(37:05):
is Matt Stillo, along with Supervising producer Sierra Kaiser and
post producer Sierra Spreen. This episode was written by Diana Davis.
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