September 4, 2024 • 25 mins
Beyond the unpredictable symptoms, Dana’s CIDP journey included misdiagnosis after misdiagnosis and many lessons in insurance coverage. All of which made frustration a frequent feeling. There are many challenges–beyond the fatigue, muscle tingling, and weakness–associated with CIDP. Dana shares her story of living with CIDP, starting with muscle numbness on a camping trip, followed by years of appointments with multiple specialists and navigating insurance hurdles. Learning from her own CIDP journey, today, Dana uses her experiences to inspire, help, and connect with others in the CIDP and Guillain-Barré syndrome (GBS) community.
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Speaker 1 (00:03):
Hi everyone, and welcome back to Untold Stories Life with
a Severe autoimmune condition. This podcast is a production of
Ruby Studio in partnership with URGENICX, 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 career studying the
(00:25):
complex realities of health care disparities and advocating to do
something about them. On this podcast, I speak with real
people living with severe autoimmune conditions like may asthenia gravis
or MG and chronic inflammatory demielinating polyneuropathy otherwise known as CIDP,
to help expand the conversation around these shared experiences. Every
(00:50):
person with a severe autoimmune condition has a unique diagnosis, journey,
and stories of struggles, resilience and hope. 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 this very emotional journey together.
(01:12):
Today we're delving into some of the frustrations of navigating
life with CIDP, as so many of our listeners know
Symptoms of CIDP, like fatigue, muscle tingling, and weakness, can
often feel unending. Now, add the stress of every day
on predictability to battles with insurance companies that can arise,
it's easy to see why frustration can be a constant companion.
(01:36):
And even with supportive communities, the emotional toll often leaves
people feeling overwhelmed and filled with uncertainty as they try
to maintain hope. Today's guest, Dana, understands this all too well.
Dana found herself on a frustrating CIDP journey. When initial
symptoms presented, she assumed they were the result of a
(01:57):
spider bite. But when the numbness and burning spread from
one foot to another, Dana knew something else entirely was
happening to her body. As her symptoms worsened, Dana ended
up bouncing from psychiatrists to rheumatologist to neurologist, all while
navigating the insurance red tape that can come with an
autoimmune condition. Finally, a doctor, sensing her mounting frustration, performed
(02:22):
a test that led to her life changing diagnosis. Now,
while taking a break from her IVIG treatments, Dana reflects
on her journey, turning her personal challenges into motivation to
enrich her community. Welcome Dana, So let's start by having
(02:44):
you describe your first symptoms.
Speaker 2 (02:48):
I was actually on a camping trip in July of
two thousand and fourteen, and I woke up one morning
and I felt anomnous in my one of my feet,
and I thought, oh my, I hope I didn't get
bitten by a spider. And then I realized that it
was in both feet, and I thought, well, that have
to be a really smart spider. So I didn't really
(03:09):
think all that much about it. I mentioned it to
my husband and we kind of went on with our
day and went to the beach and finished out our weekend.
And the following week I placed a call to my
rheumatologist and got an appointment with her, but by the
time I went to see her, I was already experiencing
the same problem in my hands. She referred me to
(03:30):
a neurologist, and the neurologist that she referred me to,
I tried to get in a point with him, and
the first point with him was six months out. So
I called my primary care physician, who was at a
different affiliated with a different hospital, and he gave me
a referral to a neurologist and I went to see him,
and he had a technician do an EMG and came
(03:54):
to the conclusion that he couldn't find anything wrong.
Speaker 1 (03:57):
Oh wow.
Speaker 2 (03:58):
So I called my primary care who gave me another
neurologist and I went to see him and he did
the old fashioned pin test of sticking little safety pendents
and using them on my feet and on my hands.
Speaker 1 (04:13):
Dana is talking about electromiography or an EMG test. In
this procedure, a doctor takes a very thin needle into
a muscle to capture and record its activity, helping to
assess the muscles health and function.
Speaker 2 (04:27):
And he thought I had carpal tunnel, and I said
to him, I'm not surprised I have carpal tunnel. I
worked on a computer, But how do you explain my feet?
And he was kind of flum mixed and didn't have
an answer. And at this point I was waking up
every morning with not only my hands and feet numb
(04:48):
and tangling, but my hands would feel like they were
on fire. And he was taking me like forty to
forty five minutes just to get out of bed in
the morning, and it was getting ridiculous. So I went
to Yah another neurologist, who told me he would give
me a referral for a psychiatrist. Thought it was all
in my head.
Speaker 1 (05:08):
Oh gosh.
Speaker 2 (05:09):
So I went back to my rheumatologist and said, you know,
if this is my life, I don't want it. And
I was hysterical, and she had never seen me like that.
You know, I'm a very strong human being, and I
put up with a lot. I've had a lot of
ailments in my whole life and I just sort of
like trudge forward with them. And she got on the
phone and got me into finally seeing the neurologist that
(05:31):
diagnosed me.
Speaker 1 (05:33):
Right, So, what did those steps to getting the diagnosis
look like for you? Exactly?
Speaker 2 (05:40):
Well, I think the toll of this disease is not
only on the pain and the oddness of the way
the disease presents itself, but on the psychological toll that
it takes. Because first of all, you have people that
don't believe there's anything wrong with you, or that you're
(06:00):
a hypochondria, or thinking that you're looking for something to
be wrong with you. You know what I mean? And
I would pay money to not have this disease.
Speaker 1 (06:11):
So you're saying that people would say, like you're looking
for attention or.
Speaker 2 (06:15):
Yes, it's not a disease that anyone thinks about. You know,
you hear hoof beats, think courses, I hear hoof beats,
I think unicorns.
Speaker 1 (06:24):
Forget about zebras, right.
Speaker 2 (06:26):
Forget about zebras. We're boring in the unicorns. And you know,
the ally of my rheumatologist was very helpful to me.
She's one of my heroes. And she knows this because
without her, I would not have gotten diagnosed. And she
was one of the first people that made me feel.
Speaker 1 (06:42):
Hurd You can hear the frustration in Dana's voice as
she describes living with an autoimmune condition like CIDP. The
lack of understanding from others and the slow pace of
diagnosis from doctors only add to the challenges someone faces
with this condition. You can't help it sympathize with irritation
and disappointment and just thinking about this sequence of doctors'
(07:08):
visits and all their varying opinions. What were your frustrations
like while navigating all this sort of conflicting feedback and
how did you manage to gain any kind of trust
in the process.
Speaker 2 (07:21):
What I've found is, you know, my primary care physician,
who I really liked, who I actually felt listen to me,
gave up his practice and went into become a concierge
doctor because he said he was spending all of his
time doing paperwork and insurance and to me, that was
like one of the saddest things in the world. So
(07:43):
I think my frustration is, or was I should say,
was that doctors weren't communicating with each other. And one
of the visions that we're in communicating is the lack
of time and the lack of facilities to be able
to actually do their job as a doctor, as well
as what they needed to make a living. So I
found a partial solution to that. And my partial solution
(08:06):
now is that all of my doctors are within the
same facility, not in the same place, but they are
all affiliated with the same hospital organization, so that all
of my medical stuff is in one place, so that
they know.
Speaker 1 (08:25):
An article in the medical journal Neurology highlights that the
time to diagnose CIDP can vary widely from two to
sixty four months. It's easy to see why this level
of uncertainty can lead to significant frustration.
Speaker 2 (08:41):
Here's the irony. The irony is that my husband and
I had been looking online and whatnot. He was on
a trusted medical website and he found this little maybe
five lines about what it was, and we printed it
out and I cut it out and I put it
in my wallet and I when I went to finally
see the neurologist who diagnosed me, he did a three
(09:04):
hour examination, He did the EMG himself, he did the
examination himself, he did my medical history himself. So when
he told me get dressed, and then we sat down
and he said, well, I think I know what's wrong
with you. And I slid this tiny little piece of
paper twits him and said could it be this? And
(09:26):
he said, you're not wrong. And I was really, really
in disbelief that I had someone like agreeing with me
and not telling me it was in my head or
that I was crazy or whatnot. So then he laid
out what the plan was.
Speaker 1 (09:41):
And thinking about that idea of like, once you finally
got the diagnosis, how did you navigate that frustration of
having to explain yourself and your condition?
Speaker 2 (09:51):
Well, I don't know that anyone in my family even
understands it now. Oh, I know my husband understands what
it is. A lot of my friends now are people
that have the disease or have Gillian Barre. So explaining
it to my other friends, I basically just tell them
that I have an autoimmune disease that affects the nerves
(10:12):
in my hands to my feet. And the odd thing
is I tell them and people go, oh, yeah, you
know what? Are immune diseases have become so numerous now, yes,
that people are not really surprised to hear about all
these new ones, right?
Speaker 1 (10:30):
Can you talk about what have been the bright spots
through all of this?
Speaker 2 (10:35):
I think I take life a little less seriously now
in that I take a little more joy in the
painless days. I realize today how lucky I am to
have this disease and not have some of the diseases
that were ruled out. Working with the GBSCIDP Foundation, I
(10:58):
have had the good fortune to be the liaison that
can go to a hospital when someone has just been
diagnosed with the GBS or CIDP and meet with the
patient or meet with their families to show them that
this is not a life ending disease. It's just a life.
We're defining disease excellent. Like I tell people, I have
(11:20):
a disability, but I am not disabled. I have a
tattoo on my arm that says, this does not define me.
Speaker 1 (11:27):
Look at that. I'm looking at that right now. That
is awesome.
Speaker 2 (11:30):
And you know what, it's not only CIDP. There's a
whole lot of changes and things that happen in our
lives that we can either take as oh God, why me,
or we can turn around and say, hey, why not me?
Look at that? And what can I do with this?
Speaker 1 (11:45):
And it doesn't define you?
Speaker 2 (11:47):
And it doesn't define me, but it can shape me.
Speaker 1 (11:53):
This theme reoccurs frequently in discussions with CIDP patients. Although
the emotional journey is challenging, many express gratitude and acceptance
after years of frustration and struggle. It's a powerful source
of inspiration for us all.
Speaker 2 (12:09):
Could you talk a.
Speaker 1 (12:10):
Little bit more about how CIDP has shaped you?
Speaker 2 (12:13):
Oh, I have so much more respect for people that
deal with just about any kind of disease. I know
that I had a couple of friends who had chronic depression,
and I, you know, kind of like I was one
of those people that went. But as part of CIDP,
that was something that I dealt with that I was
not prepared for because as you can tell, I'm a
(12:35):
pretty upby kind of person and I don't on the
whole let things get me down, and it was beating
me down. And part of my treatment in CIDP was,
in addition to the stuff I take for pain, I
also integrated an antidepressant a neuroblocker into my pill regimen
(12:57):
to help me deal with the depression part of this
as well as we use it also as a pain navigator,
because I don't like taking painments if I don't have to.
So in navigating the pain part of this, I was
also able to learn that I associated that stigma to
people without even realizing it.
Speaker 1 (13:19):
Yeah, so it sounds like the CIDP shaped you by
making you just so much more empathetic.
Speaker 2 (13:25):
And much more compassionate, much more willing to help people.
And you know, I don't just help people. I ask
whether or not they need help before I offer that help,
because sometimes people don't want help, and maybe sometimes they
shouldn't get help because then they do it themselves.
Speaker 1 (13:42):
Got it. So it sounds like a complete journey that
you're learning here.
Speaker 2 (13:46):
Yeah, and I mean in a good journey and a
bad journey. I feel like it allows me to have
a little more compassion for myself, if that makes sense.
Speaker 1 (13:54):
It does because it sounds like you were, you know,
tough on yourself.
Speaker 2 (13:58):
I never stopped working. Concessions that my boss has had
to make were that I left early once every two weeks,
I left a couple hours early to go home to
do my infusions.
Speaker 1 (14:10):
That's it.
Speaker 2 (14:10):
Yep.
Speaker 1 (14:11):
Wow. And so you finally have been able to get
to that point where, like you said, you also have
that compassion for yourself.
Speaker 2 (14:17):
Absolutely.
Speaker 1 (14:20):
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,
(14:41):
or chronic inflammatory demilinating polynuropathy 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
(15:01):
to help navigate the CIDP journey. For more information, visit
shining through CIDP dot com. And now back to untold stories. Dan,
you battled both as you mentioned, the physical symptoms and
also insurance companies, So let's get back to that a
(15:24):
little bit. Could you share some more about the frustration
of fighting for insurance approvals while managing your symptoms.
Speaker 2 (15:32):
Yeah, and I did that by myself, really, because I'd
a bull in a china shop, So get out of
the way. If any if anyone's gonna get it, it's
gonna be made. But as far as this goes, this
was a toughie because CIDP, it's not like they can
take a blood test and say you have diabetes, right,
So clinical notes are all important when you're talking about insurance.
(15:56):
So when I finally got to diagnosis by this neurology,
he had written papers on this disease. He was well
versed in the insurance company, so he kind of knew
how to put it through the insurance companies. They did
keep asking for more and more and more. But I
(16:17):
was on top of it because I wanted to start
this treatment as soon as possible. Now I have to
tell you at the time, I did not know how
much my treatment cost. Now that I know how much
my treatment cost, I know why they fought it. I think,
so I would turn circles around them, and eventually I
got it approved. And I got it approved within like
(16:38):
three weeks because I was really like a dog without
a bone, because I'd been dealing with this for so long.
I got diagnosed in December, and I didn't start treatment
till like February March. So the things I found out
later in life is the best way to start a
conversation with the insurance company, with the cable company, with
the telephone company, with anybody you're fighting with, is when
(16:58):
the person answers the phone and says, hey, this is Arlene.
How can I help you? Go Hey, Arlene, how are
you today? Let Arlene answer okay, and then say, well,
I'm glad you're doing well today. My name is and
I'm having a little bit of a problem. Maybe you
can help me. You know what, I just took an
extra twenty seconds on the phone call, but I've now
(17:19):
changed Arlene's disposition, and that's going to make a difference,
And that makes all the difference in the world. The
second part of this is now they're going to tell
me what the healthcare agency is that's going to provide
the drug to me, the pharmacy and the nurse, okay, right,
And what I got the information from the pharmacy and
(17:39):
found out what my cope was going to be. I
was like, oh, right, so you're telling me that I
know this is going to be built for an incredible
amount of money, but just for the nurse and for
the mycope on the drug and da da da, you're
going to want an addition all two grand for me
every month?
Speaker 1 (17:55):
Wow?
Speaker 2 (17:55):
And I had good insurance.
Speaker 1 (17:57):
Yeah.
Speaker 2 (17:58):
So I called the pharmacy then I said, this is
going to kill me. I'm going to basically be working
only for this. I might as well go out on
disability and have this completely covered and you'll get nothing.
And they were like, well, no, we have a financial
aid department. Let me put you through.
Speaker 1 (18:16):
Okay.
Speaker 2 (18:17):
That was an incredibly helpful thing to learn because in
the ten years that I was treated for CIDP, the
amount of copay that I paid to any of the
pharmacies providing the drug and the nurses is zero.
Speaker 1 (18:32):
Wow.
Speaker 2 (18:32):
And this is something I share with people because this
is not something anybody's going to tell you.
Speaker 1 (18:38):
Yeah, but the point is is that you figured it out,
you got it, and you've been able to pay it
forward here absolutely. As noted earlier, the cost of CIDP
treatments can be high, often leading to confusion and as
Dana's experience highlights, frustration. Thankfully, there are several assistance programs
available that can provide financial support to those in need. DNA,
(19:03):
what has helped you to move past some of these frustrations,
whether it means, you know, as you talked about earlier,
reframing your outlook or finding an outlet for your feelings.
Speaker 2 (19:15):
Okay, well, an outlift for my feelings is number one.
I go camping a lot in the summer. We're out
on the beach the whole summer long. My husband and
I volunteer for the park Service out on Fire Island.
Getting back to normalcy in my life during the pandemic.
I finally applied for and got disability without a lawyer.
By the way, I did it myself awesome because I
(19:35):
had plenty of time during the pandemic to make sure
I answered all the questions, so I was able to
slow down on the work part. Of my life and
actually be able to use the energy that I have
towards my lifelfe there you go, being able to help
others with this disease. We do a walk and roll
once a year. I know our genics has been down
there with us, and I get to, you know, talk
(19:57):
with a lot of the reps from a lot of
the pharmaceutical companies, which helps me because I'm able to
impart information to them, which I think helps them to
do their jobs. So doing that volunteer work has really
helped me to get out of myself and not be
so focused on what's wrong with me and why me?
(20:20):
Why me? Why me self? Pity does mean no good.
So I was talking to my neurologists because my husband
and I in retirement. Our plan is to travel, okay,
and she looked at all my results and my blood
tests and everything, and she said, how about we just
stop treatment and see what happens. So I have not
(20:41):
had an infusion since December eighth of last year.
Speaker 1 (20:45):
Yes, and making those travel plans and Dan, let's just
sort of you know, as we start to wrap up,
think about your experiences and how they've shaped your approach
towards advocacy and education about CIDP. How do you plan
to continue to advocate for others with this condition in
the future.
Speaker 2 (21:03):
As a matter of fact, I'm going to Philadelphia to
the Foundation in three weeks. They are doing you know,
updated liaison training. We all get to see Stelle Benson,
who runs who start at the Foundation because her husband
had GBS. So I will always continue to be a
liaison and be the point of contact as long as
I'm here in New York because anyone that reaches out
(21:25):
for help on this disease, I want to be there.
I want people to know that this is not a coda,
This is not the ending of your life. This is
the beginning of the next chapter. So what we do
after diagnosis is not only medically but personally, you know, psychologically,
(21:45):
whether or not it means s ganting into therapy, whether
or not it means you know, joining support groups, whether
or not it means becoming a liaison. I will always
continue to work in this facet because the Foundation really
says my life because it got me talking to other people.
I mean, when I get together with my friends in
this I don't have to even like sometimes you don't
(22:09):
even have to say a word, they know you're not
having a good day. Well and by the way, part
of the thing I do is I'm also part of
Bridge the Gap, which is helping to educate doctors on
this disease, regular GPS, rheumatologists, people that don't specialize in
neurological or autoimmune diseases.
Speaker 1 (22:30):
You go out there and you tell them your story.
Speaker 2 (22:32):
Yes.
Speaker 1 (22:32):
Interesting. So, Dana, what advice or words of encouragement would
you have to share with others moving through challenging moments
in their CIDP journey.
Speaker 2 (22:42):
It's not the end. You get to write the next chapter.
Advocate for yourself. Advocate advocate, Advocate for yourself. Don't worry
when people think that you're a hypochondriac, or it's all
in your head, or you're overplaying what it is. Reach out.
Reach out to us, Out to people in the community,
whether it be through a pharmaceutical company, whether it be
(23:04):
through the GBSCIDP Foundation, whether it be through your doctor.
Find people that have been there and that can help
you navigate this. You know what, you know my name now,
find me. Absolutely nothing that we go through is new.
Somebody else here has gone through it. So use us.
(23:24):
We are an incredible community. And there's a message board
on Mayo Clinic that has a thing on CIDP. Almost
every day somebody writes in and asks a question and
fifty people answer. There are Facebook groups. Don't feel like
you have to be in this alone. We know about
your neicorners.
Speaker 1 (23:41):
Yes, and this does not define you.
Speaker 2 (23:43):
Nope, this does not define you. And this is by
no means the end. It's just a new beginning.
Speaker 1 (23:48):
Well, Danna, thank you so much. This has been such
a great conversation. I really feel your energy and the
way that you have been able to make this a
way out of no way, and thank you so much
with this conversation today.
Speaker 2 (24:01):
Thank you Martin. It was a pleasure.
Speaker 1 (24:06):
What an inspiring story. Dana's ability to withstand the frustrations
during one of the most challenging times of her life
is just incredible. It's a true testament to the power
of moving forward even under seemingly impossible circumstances. Thanks for
joining us on Untold Stories Life with a severe autoimmune condition.
(24:26):
If you like this episode, come back every other week
for more and don't forget to 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 Martin Hackett. Our
executive producer is Malli Sosha. Our EP of post production
(24:47):
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 to Untold Stories Life with
a Severe autoimmune condition. This podcast is a production of
Ruby Studio in partnership with URGENICX, 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 career studying the
(00:25):
complex realities of health care disparities and advocating to do
something about them. On this podcast, I speak with real
people living with severe autoimmune conditions like may asthenia gravis
or MG and chronic inflammatory demielinating polyneuropathy otherwise known as CIDP,
to help expand the conversation around these shared experiences. Every
(00:50):
person with a severe autoimmune condition has a unique diagnosis, journey,
and stories of struggles, resilience and hope. 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 this very emotional journey together.
(01:12):
Today we're delving into some of the frustrations of navigating
life with CIDP, as so many of our listeners know
Symptoms of CIDP, like fatigue, muscle tingling, and weakness, can
often feel unending. Now, add the stress of every day
on predictability to battles with insurance companies that can arise,
it's easy to see why frustration can be a constant companion.
(01:36):
And even with supportive communities, the emotional toll often leaves
people feeling overwhelmed and filled with uncertainty as they try
to maintain hope. Today's guest, Dana, understands this all too well.
Dana found herself on a frustrating CIDP journey. When initial
symptoms presented, she assumed they were the result of a
(01:57):
spider bite. But when the numbness and burning spread from
one foot to another, Dana knew something else entirely was
happening to her body. As her symptoms worsened, Dana ended
up bouncing from psychiatrists to rheumatologist to neurologist, all while
navigating the insurance red tape that can come with an
autoimmune condition. Finally, a doctor, sensing her mounting frustration, performed
(02:22):
a test that led to her life changing diagnosis. Now,
while taking a break from her IVIG treatments, Dana reflects
on her journey, turning her personal challenges into motivation to
enrich her community. Welcome Dana, So let's start by having
(02:44):
you describe your first symptoms.
Speaker 2 (02:48):
I was actually on a camping trip in July of
two thousand and fourteen, and I woke up one morning
and I felt anomnous in my one of my feet,
and I thought, oh my, I hope I didn't get
bitten by a spider. And then I realized that it
was in both feet, and I thought, well, that have
to be a really smart spider. So I didn't really
(03:09):
think all that much about it. I mentioned it to
my husband and we kind of went on with our
day and went to the beach and finished out our weekend.
And the following week I placed a call to my
rheumatologist and got an appointment with her, but by the
time I went to see her, I was already experiencing
the same problem in my hands. She referred me to
(03:30):
a neurologist, and the neurologist that she referred me to,
I tried to get in a point with him, and
the first point with him was six months out. So
I called my primary care physician, who was at a
different affiliated with a different hospital, and he gave me
a referral to a neurologist and I went to see him,
and he had a technician do an EMG and came
(03:54):
to the conclusion that he couldn't find anything wrong.
Speaker 1 (03:57):
Oh wow.
Speaker 2 (03:58):
So I called my primary care who gave me another
neurologist and I went to see him and he did
the old fashioned pin test of sticking little safety pendents
and using them on my feet and on my hands.
Speaker 1 (04:13):
Dana is talking about electromiography or an EMG test. In
this procedure, a doctor takes a very thin needle into
a muscle to capture and record its activity, helping to
assess the muscles health and function.
Speaker 2 (04:27):
And he thought I had carpal tunnel, and I said
to him, I'm not surprised I have carpal tunnel. I
worked on a computer, But how do you explain my feet?
And he was kind of flum mixed and didn't have
an answer. And at this point I was waking up
every morning with not only my hands and feet numb
(04:48):
and tangling, but my hands would feel like they were
on fire. And he was taking me like forty to
forty five minutes just to get out of bed in
the morning, and it was getting ridiculous. So I went
to Yah another neurologist, who told me he would give
me a referral for a psychiatrist. Thought it was all
in my head.
Speaker 1 (05:08):
Oh gosh.
Speaker 2 (05:09):
So I went back to my rheumatologist and said, you know,
if this is my life, I don't want it. And
I was hysterical, and she had never seen me like that.
You know, I'm a very strong human being, and I
put up with a lot. I've had a lot of
ailments in my whole life and I just sort of
like trudge forward with them. And she got on the
phone and got me into finally seeing the neurologist that
(05:31):
diagnosed me.
Speaker 1 (05:33):
Right, So, what did those steps to getting the diagnosis
look like for you? Exactly?
Speaker 2 (05:40):
Well, I think the toll of this disease is not
only on the pain and the oddness of the way
the disease presents itself, but on the psychological toll that
it takes. Because first of all, you have people that
don't believe there's anything wrong with you, or that you're
(06:00):
a hypochondria, or thinking that you're looking for something to
be wrong with you. You know what I mean? And
I would pay money to not have this disease.
Speaker 1 (06:11):
So you're saying that people would say, like you're looking
for attention or.
Speaker 2 (06:15):
Yes, it's not a disease that anyone thinks about. You know,
you hear hoof beats, think courses, I hear hoof beats,
I think unicorns.
Speaker 1 (06:24):
Forget about zebras, right.
Speaker 2 (06:26):
Forget about zebras. We're boring in the unicorns. And you know,
the ally of my rheumatologist was very helpful to me.
She's one of my heroes. And she knows this because
without her, I would not have gotten diagnosed. And she
was one of the first people that made me feel.
Speaker 1 (06:42):
Hurd You can hear the frustration in Dana's voice as
she describes living with an autoimmune condition like CIDP. The
lack of understanding from others and the slow pace of
diagnosis from doctors only add to the challenges someone faces
with this condition. You can't help it sympathize with irritation
and disappointment and just thinking about this sequence of doctors'
(07:08):
visits and all their varying opinions. What were your frustrations
like while navigating all this sort of conflicting feedback and
how did you manage to gain any kind of trust
in the process.
Speaker 2 (07:21):
What I've found is, you know, my primary care physician,
who I really liked, who I actually felt listen to me,
gave up his practice and went into become a concierge
doctor because he said he was spending all of his
time doing paperwork and insurance and to me, that was
like one of the saddest things in the world. So
(07:43):
I think my frustration is, or was I should say,
was that doctors weren't communicating with each other. And one
of the visions that we're in communicating is the lack
of time and the lack of facilities to be able
to actually do their job as a doctor, as well
as what they needed to make a living. So I
found a partial solution to that. And my partial solution
(08:06):
now is that all of my doctors are within the
same facility, not in the same place, but they are
all affiliated with the same hospital organization, so that all
of my medical stuff is in one place, so that
they know.
Speaker 1 (08:25):
An article in the medical journal Neurology highlights that the
time to diagnose CIDP can vary widely from two to
sixty four months. It's easy to see why this level
of uncertainty can lead to significant frustration.
Speaker 2 (08:41):
Here's the irony. The irony is that my husband and
I had been looking online and whatnot. He was on
a trusted medical website and he found this little maybe
five lines about what it was, and we printed it
out and I cut it out and I put it
in my wallet and I when I went to finally
see the neurologist who diagnosed me, he did a three
(09:04):
hour examination, He did the EMG himself, he did the
examination himself, he did my medical history himself. So when
he told me get dressed, and then we sat down
and he said, well, I think I know what's wrong
with you. And I slid this tiny little piece of
paper twits him and said could it be this? And
(09:26):
he said, you're not wrong. And I was really, really
in disbelief that I had someone like agreeing with me
and not telling me it was in my head or
that I was crazy or whatnot. So then he laid
out what the plan was.
Speaker 1 (09:41):
And thinking about that idea of like, once you finally
got the diagnosis, how did you navigate that frustration of
having to explain yourself and your condition?
Speaker 2 (09:51):
Well, I don't know that anyone in my family even
understands it now. Oh, I know my husband understands what
it is. A lot of my friends now are people
that have the disease or have Gillian Barre. So explaining
it to my other friends, I basically just tell them
that I have an autoimmune disease that affects the nerves
(10:12):
in my hands to my feet. And the odd thing
is I tell them and people go, oh, yeah, you
know what? Are immune diseases have become so numerous now, yes,
that people are not really surprised to hear about all
these new ones, right?
Speaker 1 (10:30):
Can you talk about what have been the bright spots
through all of this?
Speaker 2 (10:35):
I think I take life a little less seriously now
in that I take a little more joy in the
painless days. I realize today how lucky I am to
have this disease and not have some of the diseases
that were ruled out. Working with the GBSCIDP Foundation, I
(10:58):
have had the good fortune to be the liaison that
can go to a hospital when someone has just been
diagnosed with the GBS or CIDP and meet with the
patient or meet with their families to show them that
this is not a life ending disease. It's just a life.
We're defining disease excellent. Like I tell people, I have
(11:20):
a disability, but I am not disabled. I have a
tattoo on my arm that says, this does not define me.
Speaker 1 (11:27):
Look at that. I'm looking at that right now. That
is awesome.
Speaker 2 (11:30):
And you know what, it's not only CIDP. There's a
whole lot of changes and things that happen in our
lives that we can either take as oh God, why me,
or we can turn around and say, hey, why not me?
Look at that? And what can I do with this?
Speaker 1 (11:45):
And it doesn't define you?
Speaker 2 (11:47):
And it doesn't define me, but it can shape me.
Speaker 1 (11:53):
This theme reoccurs frequently in discussions with CIDP patients. Although
the emotional journey is challenging, many express gratitude and acceptance
after years of frustration and struggle. It's a powerful source
of inspiration for us all.
Speaker 2 (12:09):
Could you talk a.
Speaker 1 (12:10):
Little bit more about how CIDP has shaped you?
Speaker 2 (12:13):
Oh, I have so much more respect for people that
deal with just about any kind of disease. I know
that I had a couple of friends who had chronic depression,
and I, you know, kind of like I was one
of those people that went. But as part of CIDP,
that was something that I dealt with that I was
not prepared for because as you can tell, I'm a
(12:35):
pretty upby kind of person and I don't on the
whole let things get me down, and it was beating
me down. And part of my treatment in CIDP was,
in addition to the stuff I take for pain, I
also integrated an antidepressant a neuroblocker into my pill regimen
(12:57):
to help me deal with the depression part of this
as well as we use it also as a pain navigator,
because I don't like taking painments if I don't have to.
So in navigating the pain part of this, I was
also able to learn that I associated that stigma to
people without even realizing it.
Speaker 1 (13:19):
Yeah, so it sounds like the CIDP shaped you by
making you just so much more empathetic.
Speaker 2 (13:25):
And much more compassionate, much more willing to help people.
And you know, I don't just help people. I ask
whether or not they need help before I offer that help,
because sometimes people don't want help, and maybe sometimes they
shouldn't get help because then they do it themselves.
Speaker 1 (13:42):
Got it. So it sounds like a complete journey that
you're learning here.
Speaker 2 (13:46):
Yeah, and I mean in a good journey and a
bad journey. I feel like it allows me to have
a little more compassion for myself, if that makes sense.
Speaker 1 (13:54):
It does because it sounds like you were, you know,
tough on yourself.
Speaker 2 (13:58):
I never stopped working. Concessions that my boss has had
to make were that I left early once every two weeks,
I left a couple hours early to go home to
do my infusions.
Speaker 1 (14:10):
That's it.
Speaker 2 (14:10):
Yep.
Speaker 1 (14:11):
Wow. And so you finally have been able to get
to that point where, like you said, you also have
that compassion for yourself.
Speaker 2 (14:17):
Absolutely.
Speaker 1 (14:20):
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,
(14:41):
or chronic inflammatory demilinating polynuropathy 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
(15:01):
to help navigate the CIDP journey. For more information, visit
shining through CIDP dot com. And now back to untold stories. Dan,
you battled both as you mentioned, the physical symptoms and
also insurance companies, So let's get back to that a
(15:24):
little bit. Could you share some more about the frustration
of fighting for insurance approvals while managing your symptoms.
Speaker 2 (15:32):
Yeah, and I did that by myself, really, because I'd
a bull in a china shop, So get out of
the way. If any if anyone's gonna get it, it's
gonna be made. But as far as this goes, this
was a toughie because CIDP, it's not like they can
take a blood test and say you have diabetes, right,
So clinical notes are all important when you're talking about insurance.
(15:56):
So when I finally got to diagnosis by this neurology,
he had written papers on this disease. He was well
versed in the insurance company, so he kind of knew
how to put it through the insurance companies. They did
keep asking for more and more and more. But I
(16:17):
was on top of it because I wanted to start
this treatment as soon as possible. Now I have to
tell you at the time, I did not know how
much my treatment cost. Now that I know how much
my treatment cost, I know why they fought it. I think,
so I would turn circles around them, and eventually I
got it approved. And I got it approved within like
(16:38):
three weeks because I was really like a dog without
a bone, because I'd been dealing with this for so long.
I got diagnosed in December, and I didn't start treatment
till like February March. So the things I found out
later in life is the best way to start a
conversation with the insurance company, with the cable company, with
the telephone company, with anybody you're fighting with, is when
(16:58):
the person answers the phone and says, hey, this is Arlene.
How can I help you? Go Hey, Arlene, how are
you today? Let Arlene answer okay, and then say, well,
I'm glad you're doing well today. My name is and
I'm having a little bit of a problem. Maybe you
can help me. You know what, I just took an
extra twenty seconds on the phone call, but I've now
(17:19):
changed Arlene's disposition, and that's going to make a difference,
And that makes all the difference in the world. The
second part of this is now they're going to tell
me what the healthcare agency is that's going to provide
the drug to me, the pharmacy and the nurse, okay, right,
And what I got the information from the pharmacy and
(17:39):
found out what my cope was going to be. I
was like, oh, right, so you're telling me that I
know this is going to be built for an incredible
amount of money, but just for the nurse and for
the mycope on the drug and da da da, you're
going to want an addition all two grand for me
every month?
Speaker 1 (17:55):
Wow?
Speaker 2 (17:55):
And I had good insurance.
Speaker 1 (17:57):
Yeah.
Speaker 2 (17:58):
So I called the pharmacy then I said, this is
going to kill me. I'm going to basically be working
only for this. I might as well go out on
disability and have this completely covered and you'll get nothing.
And they were like, well, no, we have a financial
aid department. Let me put you through.
Speaker 1 (18:16):
Okay.
Speaker 2 (18:17):
That was an incredibly helpful thing to learn because in
the ten years that I was treated for CIDP, the
amount of copay that I paid to any of the
pharmacies providing the drug and the nurses is zero.
Speaker 1 (18:32):
Wow.
Speaker 2 (18:32):
And this is something I share with people because this
is not something anybody's going to tell you.
Speaker 1 (18:38):
Yeah, but the point is is that you figured it out,
you got it, and you've been able to pay it
forward here absolutely. As noted earlier, the cost of CIDP
treatments can be high, often leading to confusion and as
Dana's experience highlights, frustration. Thankfully, there are several assistance programs
available that can provide financial support to those in need. DNA,
(19:03):
what has helped you to move past some of these frustrations,
whether it means, you know, as you talked about earlier,
reframing your outlook or finding an outlet for your feelings.
Speaker 2 (19:15):
Okay, well, an outlift for my feelings is number one.
I go camping a lot in the summer. We're out
on the beach the whole summer long. My husband and
I volunteer for the park Service out on Fire Island.
Getting back to normalcy in my life during the pandemic.
I finally applied for and got disability without a lawyer.
By the way, I did it myself awesome because I
(19:35):
had plenty of time during the pandemic to make sure
I answered all the questions, so I was able to
slow down on the work part. Of my life and
actually be able to use the energy that I have
towards my lifelfe there you go, being able to help
others with this disease. We do a walk and roll
once a year. I know our genics has been down
there with us, and I get to, you know, talk
(19:57):
with a lot of the reps from a lot of
the pharmaceutical companies, which helps me because I'm able to
impart information to them, which I think helps them to
do their jobs. So doing that volunteer work has really
helped me to get out of myself and not be
so focused on what's wrong with me and why me?
(20:20):
Why me? Why me self? Pity does mean no good.
So I was talking to my neurologists because my husband
and I in retirement. Our plan is to travel, okay,
and she looked at all my results and my blood
tests and everything, and she said, how about we just
stop treatment and see what happens. So I have not
(20:41):
had an infusion since December eighth of last year.
Speaker 1 (20:45):
Yes, and making those travel plans and Dan, let's just
sort of you know, as we start to wrap up,
think about your experiences and how they've shaped your approach
towards advocacy and education about CIDP. How do you plan
to continue to advocate for others with this condition in
the future.
Speaker 2 (21:03):
As a matter of fact, I'm going to Philadelphia to
the Foundation in three weeks. They are doing you know,
updated liaison training. We all get to see Stelle Benson,
who runs who start at the Foundation because her husband
had GBS. So I will always continue to be a
liaison and be the point of contact as long as
I'm here in New York because anyone that reaches out
(21:25):
for help on this disease, I want to be there.
I want people to know that this is not a coda,
This is not the ending of your life. This is
the beginning of the next chapter. So what we do
after diagnosis is not only medically but personally, you know, psychologically,
(21:45):
whether or not it means s ganting into therapy, whether
or not it means you know, joining support groups, whether
or not it means becoming a liaison. I will always
continue to work in this facet because the Foundation really
says my life because it got me talking to other people.
I mean, when I get together with my friends in
this I don't have to even like sometimes you don't
(22:09):
even have to say a word, they know you're not
having a good day. Well and by the way, part
of the thing I do is I'm also part of
Bridge the Gap, which is helping to educate doctors on
this disease, regular GPS, rheumatologists, people that don't specialize in
neurological or autoimmune diseases.
Speaker 1 (22:30):
You go out there and you tell them your story.
Speaker 2 (22:32):
Yes.
Speaker 1 (22:32):
Interesting. So, Dana, what advice or words of encouragement would
you have to share with others moving through challenging moments
in their CIDP journey.
Speaker 2 (22:42):
It's not the end. You get to write the next chapter.
Advocate for yourself. Advocate advocate, Advocate for yourself. Don't worry
when people think that you're a hypochondriac, or it's all
in your head, or you're overplaying what it is. Reach out.
Reach out to us, Out to people in the community,
whether it be through a pharmaceutical company, whether it be
(23:04):
through the GBSCIDP Foundation, whether it be through your doctor.
Find people that have been there and that can help
you navigate this. You know what, you know my name now,
find me. Absolutely nothing that we go through is new.
Somebody else here has gone through it. So use us.
(23:24):
We are an incredible community. And there's a message board
on Mayo Clinic that has a thing on CIDP. Almost
every day somebody writes in and asks a question and
fifty people answer. There are Facebook groups. Don't feel like
you have to be in this alone. We know about
your neicorners.
Speaker 1 (23:41):
Yes, and this does not define you.
Speaker 2 (23:43):
Nope, this does not define you. And this is by
no means the end. It's just a new beginning.
Speaker 1 (23:48):
Well, Danna, thank you so much. This has been such
a great conversation. I really feel your energy and the
way that you have been able to make this a
way out of no way, and thank you so much
with this conversation today.
Speaker 2 (24:01):
Thank you Martin. It was a pleasure.
Speaker 1 (24:06):
What an inspiring story. Dana's ability to withstand the frustrations
during one of the most challenging times of her life
is just incredible. It's a true testament to the power
of moving forward even under seemingly impossible circumstances. Thanks for
joining us on Untold Stories Life with a severe autoimmune condition.
(24:26):
If you like this episode, come back every other week
for more and don't forget to 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 Martin Hackett. Our
executive producer is Malli Sosha. Our EP of post production
(24:47):
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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