January 17, 2024 • 33 mins
As a successful and resilient attorney, Rorey was blindsided by the onset of debilitating muscle weakness and fatigue. After months of countless tests, he found a sense of relief when doctors diagnosed him with chronic inflammatory demyelinating polyneuropathy (CIDP). He navigated the complications of a condition that is not always visible or understood by others. Looking to be an active partner in his treatment, Rorey used his analytical skills to do research and find ways to manage his condition. With family support and an amazing healthcare team, he cultivated grace and acceptance for his condition. Learning to not only manage his physical limitations, Rorey has also found a new perspective on his overall health and overcoming challenges through his CIDP journey.
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Episode Transcript
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Speaker 1 (00:00):
This podcast is not intended to provide medical advice. Please
talk to your doctor about any medical concerns. 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 Argenix and I'm your host, Martine Hackett.
(00:21):
I'm an Associate Professor and Director of Public Health Programs
at Hofstra University. As a researcher, professor, and public health expert,
I've spent my career studying the complex realities of health
care disparities. On this podcast, I speak with real people
living with severe autoimmune conditions to expand the conversation around
these shared experiences. Every person living with an autoimmune condition
(00:45):
has a unique story to tell. Will uncover how each
journey is unique and powerful, exploring how community and care
are essential parts of each experience. Will also highlight the
importance of self advocacy and support. Today's episode will fl
becus on chronic inflammatory demilinating polyneuropathy or CIDP. You may
remember learning about it in season one when we heard
(01:07):
from Crystal and Scott. CIDP is a neurological condition causing
progressive weakness in the arms and legs. The immune system
attacks the protective layer that surrounds the nerves and the muscles.
This damage causes nerve signaling to fail, which is why
some people with the condition may experience difficulty walking. Today's guest, Rory,
(01:29):
is an attorney who discovered he had CIDP after experiencing
muscle cramps and numbness in his limbs. His fatigue was
so debilitating that he found it hard to walk or stand. Additionally,
his journey included a series of misdiagnoses that delayed him
from getting the care he needed. But ever determined, Rory
(01:49):
continues to cultivate the proper treatment regimen to aid him
in rebuilding his life with CIDP. Good morning, Rory, Good morning,
So good to be able to talk to you today.
Let's begin. What was your life like before getting your
CIDP diagnosis? What were you focused on at that time?
Speaker 2 (02:13):
So prior to my diagnosis with CIDP, I mean I
would describe my life as an opportunity of first and
what I mean by that is it kind of prepared
me annoyingly right for the journey I would face with CIDP.
For example, when I was three or four years old,
I was placed into a foster home. My older brother
(02:35):
and my younger sister were placed together, and now it's
by myself. And I was placed, as you know, a
little African American little boy into an all white community
that had never seen a black person before. So that
was like a first experience for me that kind of
like build up my resilience. Of course, at the time,
I didn't know like why this was happening to me,
but looking back, it really has served me well. And
(02:57):
so from there, probably when I was around I'm ten
years old or so, I then got a doctored by
my grandmother, who at the time was taking care of
thirteen grandchildren, including myself. So you can imagine how difficult
that was to live in the environment like that. But
I managed to be in that national out society. You know,
I graduated and I was the first to ever go
(03:20):
to college. So, you know, I get to college and
I had never had a computer at my home. And
I remember my first day going to college and I'm
going to the computer lab and I see all these
computers and I'm scared to death, right, I don't know
even know how to use this they And then I
had the audacity to try to go to law school. Right,
So yeah, another first, I graduated from law school. I
(03:43):
took the bar exam, and I passed practicing law. You
know how exciting is that? And you can imagine the
opportunities that present themselves, you know, as the first to
do something like that. Then my career goes kind of
just taking off from there. And I had been in
a long term relationship for about twenty sixty years or so, wonderful,
and then CIDP hit and my whole world just changed
(04:07):
in an instant. But I had to rely on then
all of those first I was telling you about that
really came to play to like being resilient to address CIDP.
So that's kind of like what my life was before.
But even like a year before, you know, I have
been traveling. We had been to Saint Martin, the Netherlands, Austria,
all different places, right, I mean, I was just I
(04:28):
love to travel and I was able to do that
with no issue. Fast forward to today and it's life
is a little bit different, but you know, I'm managing
it and I'm doing well.
Speaker 1 (04:37):
Going back to that time, what were some of your
earliest symptoms?
Speaker 2 (04:41):
The first one I remember is the fatigue, and I'm like,
this is just unusual for somebody of my age. But
then it progressed into not just fatigue, but exhaustion. So
I would sleep all weekend long, you know, once Friday
I just crashed. I would sleep all the time, and
then I already to get weakness in my arms and
(05:03):
my legs, so it became difficult to even like carry groceries.
You know. I would be very winded. I had bloating,
severe weight gain, like probably like thirty pounds. I also
had severe muscle cramps. And I'm not talking about like
you know, a little Charlie horse. These are muscle cramps
that would last from fifteen to forty seconds, but they
(05:28):
would be so intense that they definitely would make me nauseous,
almost made me vomito, and definitely put me into tears.
I also had these weird sensations in my body. For example,
my skal would be burning like it was on fire.
My face might be twitching a little bit, my arms
would be like somebody was stabbing them, and then my
(05:52):
thighs would be like kind of tingling, and then my
feet would be numb like all this would be happening
at the same all these different sensations at the same time,
and that's, oh my gosh, there's something really going on there.
You know. I did some research, and I was trying
to find a doctor who was a neurologist and that
kind of you know, knew about some of these symptoms.
So I was fortunate enough to find a very good one,
(06:14):
and I remember the first day I went to his
office and he you know, examined me, and he immediately said,
I think you have something out of immune going on.
I don't know what it is exactly. I think it
might be multiple scrols, but I'm not sure. He is, like,
so we're going to have to go down this path
of doing lots of tests and ruling things out to
(06:35):
figure out what is going on with you. The first
thing I remember doing was having an MRI done of
my head. From there, I also had the EMG like
the nerve conduction study test where they put these electrodes
on your body to see, you know, how the response goes.
(06:55):
And then they also put like these needles into your
muscle area and they move it around. Oh, oh my gosh,
so that is thinking about it. Yes, Oh my gosh.
That is the most unpleasant thing in the world, you know,
so like they're moving these things around and electrodes are
popping all over the place. But I remember when it
got down to my wrist, I screamed so loud because
(07:17):
like there's this huge electrical shock that went too And
I think at first the doctor who was doing the
test was kind of upset with me. He's like, what's wrong,
what's wrong. I'm like, what do you mean, what's wrong?
Speaker 1 (07:27):
Just have an electric shock.
Speaker 2 (07:29):
Right, exactly right. What's important about this is that he
told me, I think you have carpal tunnel. He's like,
but the thing with us is that all the symptoms
that you're describing don't necessarily all fit. Carple tunnel doesn't
describe them all. Right. From there, I had I would
say probably up to twenty four blood tests ranging from
(07:53):
the normal right just CBC to iron to you know,
making sure you don't have any you know, ScDs or
there's something else autoimmune, certain types of cancers, you know,
on and on and on. So once all of those
things come back fine, then you start getting into the
other way stuff, right, trying to figure out what it is.
Speaker 1 (08:12):
Like the next level, yes, and so it sounds like
you're meeting then with different specialists, and how do you
prepare for those different meetings to get that right diagnosis.
Speaker 2 (08:22):
Once I found this person who was the expert, he's like, look,
you know, we have to go through this process. But
it took months. And I recall as we were still
doing the test, going into an office visit with him
and saying, if you do not figure out what's wrong
with me within like a month or two, like, I
(08:45):
am not going to be walking because the deterioration was
happening so fast. Wow, I mean it was the point
there where my balance was completely off. I couldn't turn
around in the shower. I had to hold on to
the walls. That's how you know. Everything was changed on
me so fast and I couldn't move my toes.
Speaker 1 (09:03):
How did you deal with that period of uncertainty around
your condition at that time?
Speaker 2 (09:08):
Well, fortunately the doctor that was working with me, we
really built a strong connection, right, and it was more
than just like I was the patient and he was
a doctor. You know, we really were like a partnership.
He's like, you know, and he's like, look, I need
you to tell me what's going on. And so I
was very honest and upfront with him, and he was
(09:29):
with me. Although I was like anxious about what my
future would look like, I felt like I was in
really good hands and that he was doing the right
thing by me, even though it was taking longer than
I would have wanted. The final thing was a spinal tap, wow,
and figured out it was the IDP.
Speaker 1 (09:47):
So it sounds like it was you had a true
disease detective, you know, working with you.
Speaker 2 (09:51):
Yes, I could tell that he was very skilled in
dealing with this issue. And in fact, he is one
of the heads of the multiple ross centers right that
also includes other immune conditions, so he sees lots of
patients that have these issues, not as many of course
the IDP, but he knows how to document these right
(10:11):
to get his patients to the treatment that they need.
And that was obvious to me.
Speaker 1 (10:15):
And so I mean, now you have the CIDP diagnosis,
how did you find support within your professional and personal
communities while dealing with it?
Speaker 2 (10:24):
So at first it was very lonely and very scary.
I mean, really the only person I had was this doctor.
But one of the first things he did, he said, Rory,
I'm going to have you see a neuropsychiatrist. I'm like, well,
why right, I'm thinking to myself, He's like, you're going
to need the support, and you're going to need to understand,
you know, what this means for long term and this
(10:46):
person is skilled at helping people like you that they
don't have any mental conditions, but this is going to
change the way you live your life. Yeah, And so
what a wonderful asset has been.
Speaker 1 (10:59):
Oh, I'm so glad to hear that this is somebody
who's really you know, who understands what you're going through
and is able to kind of support you all the
way throughout.
Speaker 2 (11:07):
Yes, And in fact they're in the same network. Okay,
and so this doctor's able to see my doctor's notes
and things like that, and he's a neurologist himself, right,
being a neuropsychiatrist or he understands the condition.
Speaker 1 (11:21):
That's amazing. And so that seems like, you know, just
a great confluence of a you know, specialists who it
seems like it's probably like a thousand years of school,
but you know that they're able to be prepared and
be there for you.
Speaker 2 (11:34):
Yes, absolutely, just absolutely wonderful.
Speaker 1 (11:37):
When we were on earlier, I saw all your degrees
behind you, and so as an attorney, what are some
of the ways that your legal background has informed your
approach to navigating the healthcare system and your treatment options
for CIDP.
Speaker 2 (11:52):
Well, one, I'm a researcher, right just by profession, and
so that has really helped me become knowledge about my
own condition. So I actually research it and I learned
about you know, what does it do, even down to
the medication that I take. I started out with intravenious treatment,
but it took me probably about seven months or so
(12:14):
to see real improvement. But I understood from others who
you know, had treatment like within weeks to months or
a month or so, you know, they saw rapid improvement,
and I wasn't seeing that, right, and so I was
being I mean, I was kind of very discouraged by that.
But after the seven months or so, I switched to
substutaneous infusions. In fact, I was in occupational therapy and
(12:36):
physical therapy at this at that time, and they had,
you know, two weeks before, had tested my strength and
I wasn't even anywhere near where I should be. Fast forward,
they test me and my strength is better than the
average for somebody of my age. What, Yes, that's awesome.
Speaker 1 (12:56):
So it worked.
Speaker 2 (12:57):
Oh it worked. I'm like, oh my gosh, I could.
I was a static, right, yes, wonderful.
Speaker 1 (13:03):
Worry, where do you go for your resources and your research?
Speaker 2 (13:07):
For research? I will look at and I'm very careful
about the sources that I that I look at. So
I usually definitely will go to NIH for sure and
look at their research studies and what they said.
Speaker 1 (13:18):
National Institute of Health, Yes.
Speaker 2 (13:20):
And then neurology journals. I look at those, and I
look at the peer reviews to see, you know, what
they're saying about it. So oftentimes I will take articles
that I that I find and I'll bring them to
my neurologists and say, oh, look what I found. So,
I mean, it's just an example of just coming together
and talking about you know, what did you find and
(13:41):
what we can do from here, and him.
Speaker 1 (13:43):
Not feeling threatened that you know, here you are coming
with this information challenging him.
Speaker 2 (13:48):
I have to say that I'm very fortunate because my doctors.
That's one of the things I love about me is
that I come to the table with ideas and things
that I learned, and I don't do it in a
threatening way at all. Yeah, it's really more about a partnership.
And I think they like that because I can actually
articulate to them what it is I'm feeling, what am
I doing, and why do I want to take a
(14:10):
certain action that I want to take or don't want
to take one? And I think that they all would
tell me it helps them treat me better.
Speaker 1 (14:17):
So you're advocating you're taking active role in your treatment. Yes, wonderful.
So let's talk about the people around you in your life.
How do you help them to understand your diagnosis and
the impacts of CIDP.
Speaker 2 (14:30):
So I normally am more of a reserved type of person.
You can't tell them now, right, I'm out of my show, Nope,
but I yes, right, So, like I really was, you know,
I would talk to people if they talked to me
and stuff like that, but just for me to like
to be self engaging and like get all involved, I
really didn't do that. But I think that was more
about like my history or my background, you know, just
(14:52):
because of you know, I was always kind of on
the fringes. But once this condition came, I'm like, okay,
well I have to do something here, right, How am
I going to ge support? And I don't know anybody
that has this condition. So one of the things I
did was with my family, I would take pictures of
myself by doing certain things, but say like my scuff
(15:14):
was already right, I would literally take a picture of
it so they could see. So I wasn't just telling
them I see right, so they could actually see for
themselves what I'm really going through. I would show them
pictures of you know, my cane. The visual right is
so important. It's more than just telling them because they
can't they can't tell they don't live your experience, right,
(15:36):
but they have something that they can identify with that
they've seen other people have. And then I sent them
there's a one, maybe a two or three minute small
little clip video of what is CIDP from the GPS
CIDP Foundation. It's a great video. You know, it's kind
of like animated in a way, and it you know,
(15:57):
it talks about you know, how it makes you feel,
what the symptoms.
Speaker 1 (15:59):
Are are, and it really breaks it down.
Speaker 2 (16:01):
It really breaks it down, you know, and it's a
great resource everybody. I send that to my friends and
my family, they're like, oh, thank you for sending this
to us, you know, that helps us understand better what
you're going through. But even with that, I think the
best tool is when they see it like in person,
(16:22):
like oh my gosh, like this is not like this
is for real. And so if you don't mind, I
want to give you like two quick examples.
Speaker 1 (16:28):
Okay.
Speaker 2 (16:29):
The first one is when I was doing therapy, a
nurse had to be at my house with me right
to administer it. Yes, and I live on the thirteenth
floor in this high rise apartment building, and this particular
day there was a fire along and so we had
to like go down the stair to get up of
the building. I did not know and she did not
know that I couldn't walk down the stairs. Gosh, that
(16:49):
was the first time. I mean I was in shock.
Actually like wait a minute, feet moved, Yeah, exactly. I
mean I'm like, oh my gosh, like what am I
going to do here? And she's like, ohor that I
didn't know that this was at the stage of disability
for you, because you look so strong and everything, like
I didn't you know, I didn't know this. So I'm like, well,
what are we going to do? She's like, what you're
(17:09):
going to hold on to the railing and then I'm
going to be on your other side and We're just
going to do one step at a time. Thirteen flights, Yes,
thirteen flights. So I finally get downstairs, right, and we
get outside and do you know that somebody had burt
popcorn and they told us to come back in.
Speaker 1 (17:25):
Oh, like, everything's fine, let's.
Speaker 2 (17:29):
Go right right. So anyway, I guess that with like
a very that's an example of someone seeing it for themselves,
don't including me, right, But.
Speaker 1 (17:38):
Like you said, you'd come off so strong and you
look fine, and it's just not until they actually can
see what it is that you're going through that it
just hits home exactly right. 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
(18:00):
severe autoimmune conditions, Ourgenics is dedicated to shining a light
on resources that support the CIDP, 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
(18:21):
joyful life. Shining through CIDP features real stories, tips on
emotional self care, and new ideas to help navigate the
CIDP journey. For more information, visit Shining THROUGHCIDP dot com.
And now back to untold stories. Let's talk about your strategies.
(18:47):
Do you have any specific strategies you've developed to address
these physical and emotional aspects of living with CIDP.
Speaker 2 (18:54):
I mean, first of all, you know, definitely spiritual. I
mean I just I rely on you know, God to
just direct me and to help me, you know, have
the strength to get through things every day. So I
just changed my mindset about like how I feel about
the condition, understanding that I don't have to do everything
all at once, right pacing myself. So initially when I
(19:18):
was diagnosed, when I would get like this birth of energy,
I'm like, oh, I have this energy now, so let
me do everything. Let me sweet, let me clean the bathroom,
let me you know, let me do my laundry, like
all these things I was trying to do. Right, Oh
my gosh, not a good idea. Let me just say,
because you pay for it the next day. But I've learned,
(19:38):
like over time, to like Okay, you know what I
can do one little laundry today, I can do it
enough load tomorrow. Right. So that's how I've started dealing
with some of the physical like limitations that I have.
Speaker 1 (19:52):
Right.
Speaker 2 (19:53):
And then from just a work perspective, I've been very
fortunate and that my employer lets me work from home
full time.
Speaker 1 (20:01):
Wonderful.
Speaker 2 (20:03):
So that has been a game changer because if I
had to do it in person, I mean, I don't
think I would be able to do it. So I
mean that has just been truly wonderful. And then in
terms of support GBS CIDP Foundation, they have a lot
of them, asked the expert seminars, so I tried to
(20:23):
listen to as many of those as I can. They
have like coffee chats with other people across the country
that have a CIDP, so I've been able to meet
some people through there that otherwise wouldn't meet. A few
months ago, I attended the first annual conference here in DC,
oh Okay, and that was awesome to see all these
(20:45):
people at various stages right with their CIDP coming together
as a community. I never felt so good in my life, right,
I mean it just to see somebody else and talk
to them like, what is your experience? What do you do? Right?
Speaker 1 (21:00):
And they know exactly what you're talking about.
Speaker 2 (21:01):
That I know exactly what you're talking about. You don't
have to apologize, right, You're just explain exactly you just
you are you are. And you know, one of the
things that stood out from me that although all of
us were at different stages in our CIDP, you know,
the limitations and all that were a common reality. There
were two One was actually there were three. One was
(21:25):
the amount fatigue everybody said they had. It didn't matter
if you were like what they called so called in remission.
They were still fatigued. People that are you know, were
in you know, wheelchairs fatigued, and then people like me fatigued. Right,
It's very interesting that everyone's still this is like a
common thing. The other thing is the feeling of particularly
(21:47):
when you first get diagnosed, isolation.
Speaker 1 (21:50):
Yeah.
Speaker 2 (21:51):
Everybody told me that they felt alone, even though they
had loved ones maybe surrounding them, which is great, they
still didn't have somebody that they could say, how do
you feel right? You know, what do you do when
you have these symptoms? It resonated with me. Yeah, I
get that.
Speaker 1 (22:08):
And then you said there's a third thing, yes and no,
I forgot y got it. So you mentioned about connecting
with others and meeting other people with CIDP. Do you
have any tips or how to push through the challenges
and symptoms of CIDP and find meaning, happiness, and maybe
(22:29):
even joy in life.
Speaker 2 (22:32):
So for me, when everything changed was when I decided
that I was going to become an act to participant
in my health, not just sit back and let the
doctors tell me what to do. Yeah, once my mindset changed,
then I could see this as it's a new life,
(22:54):
but I have opportunities and not only am I surviving,
but I'm thriving. And there's a huge difference between the two.
Some of the things I've done, I participated in an
interview panel. They're trying to see like what's a daily
life with people at CIDP. So I've done that. There
was a company that was trying to come up with
a new way to deliver plasma to individuals IDP, and
(23:18):
so they actually came to me and they had the
setup where they showed me a video. Then they had
the apparatus out and they had me looking at it.
They're like, Okay, I want you to act as though
you're doing your own self infusion. And then I was
able to tell them things that are good about it
since that were bad about it. Was that was so
(23:39):
empowering because there were things that I've always wanted to say,
like who and the heck came up with this idea? Right?
Speaker 1 (23:46):
You told them?
Speaker 2 (23:46):
Yeah, So I was able to tell them things like
that all changes the way you feel. You have a
little bit sense of control right over something that you
know you seemingly don't have control over, but you have
to control over how you about it.
Speaker 1 (24:01):
That's right, And it sounds like also to this, like
you said, it fits within your the story of your life,
the story of Rory, right in terms of just always
being the one to kind of like take a situation
that's not great and you know, make a way out
of no way.
Speaker 2 (24:14):
Exactly. Yes, wonderful.
Speaker 1 (24:16):
And so can you talk about what you mentioned this
a little bit about what adjustments that you've had to
make to stay positive in your CIDP journey. How has
your experience with CIDP influenced your approach to self care
and overall well being.
Speaker 2 (24:32):
So this came along with practice and acceptance of the
condition itself. So what I mean by that is, I
think I told you that it was difficult for me
to take a shower, right, like I would have to
hold on to the walls. So I remember deciding, you know,
it's time for me to get one of those seats
that I put in the topic.
Speaker 1 (24:53):
Right.
Speaker 2 (24:53):
That was so hard for me because that was the acknowledgement,
right that in fact I have this limitation, I see,
but you know, I got it, and I'm you know what, Actually,
this isn't making my life better, right, this is easier
for me to take my shower, you know. So as
you start doing practicing things like that, you realize that
self care is important and it doesn't really matter what
(25:15):
other people think. You just need to take care of yourself.
Speaker 1 (25:19):
So it sounds like CIDP sort of has changed your
outlook on caring for your overall health.
Speaker 2 (25:25):
Yes, it has my overall health and not to mention
and I never really thought about this before, but my
mental health. Hmm, there is such a connection between the two.
I never really you know, I knew intellectually, yes, but
going through this experience, you have to take care of both.
Because when I know, when i'm stressed, I immediately feel
(25:49):
the symptoms. Interesting, my skin burned so bad when I'm stressed,
like immediate, it's not like you know, a delay. Then
I know that I'm not taking care of myself. I'm
not handling the situation the way I should.
Speaker 1 (26:03):
Because if you handle a different way, you can feel
a difference in your body.
Speaker 2 (26:06):
Yes, correct, And sometimes you know, part of this is
letting things go. Yes, letting people go, which is hard.
It's I mean, you find that your circle is small.
Even people that love you and care about you, they
don't get it, and so you can see them they
(26:26):
don't really know how to respond to you, so they
stop engaging m And then at that point you have
to decide for yourself, well, is this a good thing
or is this a bad thing?
Speaker 1 (26:37):
Am I going to chase them?
Speaker 2 (26:38):
Right? And initially I did, right, I still wanted this relationship,
but it made me feel bad. Yeah, and what did
it do? It changed my symptoms?
Speaker 1 (26:50):
Right, And then I basically felt it.
Speaker 2 (26:51):
Yes, Yes, I'm not gonna do that anymore. If they're
not in my circle. They're not in my circle. It's
a hard thing to go through. It really is hard,
but you you have to do it if you're going
to thrive, now survive thrive mm hmm.
Speaker 1 (27:06):
There season for a reason, right, There's some people who
are in your life for different times, right, Yes, And
have you encountered any misconceptions or biases regarding CIDP within
your communities, your professional circles, and if so, how do
you address them?
Speaker 2 (27:22):
Yes? So in my professional circles, I think part of
the reason that there's misconceptions with it because actually I've
shared that video that I'm mentioned to you nice with
my with my team as well as my supervisors. I've
been very open about that, which I think has helped me.
But they still have misconceptions about what does it really
(27:44):
feel like to be fatigued? What does it really feel like?
They have muscle weakness? Because I see me and I
look good, right, I sound strong, and so the weakness
to them doesn't ever show through, But they don't know that,
like it takes me longer to do my work and
so therefore I'm working at night when I'm already fatigued,
trying to catch things up. Yeah, all they know is
(28:05):
the next day they have a really good product, you know,
and now what it took to get there? Right exactly.
So they're missing all of this stuff and I'm still
trying to struggle with trying to get them to understand
how does that work? Right? Because they don't see any
of that. So that is something I'm still actually trying
to work on. How do I get them to understand this?
(28:27):
And maybe they won't, maybe they can't, you know exactly.
So that is, you know, an area that is you know,
kind of difficult.
Speaker 1 (28:35):
I think, yeah, And that's the thing, right, you can
just keep doing what you're doing, and it's it is.
It might be something that's just invisible to them forever.
Speaker 2 (28:44):
That's right.
Speaker 1 (28:45):
So finally, Rory, what words of advice or encouragement would
you share with someone who is newly diagnosed with CIDP.
Speaker 2 (28:54):
So I would say, give yourself the grace and the
space two come to terms with your condition right to
understand that, yes, your life has changed, you have to
acknowledge it, because that's the only way that you can
move forward. If you don't, all you're going to do
is try to survive, and you're not going to thrive.
(29:16):
The only way to thrive is to acknowledge what's happening,
and then from there you open yourself up to the
possibility of learning more about your condition, sharing your condition
with others, and finding a way to just mentally feel
better about your new life.
Speaker 1 (29:32):
And then maybe, like you said, partner with your care
providers and you know, find a way to have that
advocacy and education and encouragement for others.
Speaker 2 (29:43):
Yes, you have to find a community a family. If
you don't people surrounding you are that you create your own.
And that's really credit what I have done.
Speaker 1 (29:53):
You know.
Speaker 2 (29:54):
When I first started, I had my providers who we
are all in different networks, and so now they are
all in the same network for the most part, and
they talk to one another. They'll call one another about
me and say, oh, Rory was in my office today.
This is going on, and I want to prescribe this medication.
You know, it's just going to impact you know, what
you're doing over here, which is wonderful, you know. And
(30:17):
they'll call me and let me know what's going on.
They're like my family, they really are. Like they're not
just my doctors, but I feel I could call any
of them at any time. And then I actually signed
up for what they call a concierge type service because
I was having difficulty of organizing all my medications, all
these different appointments, you know, all these different specialists just
(30:38):
organizing it. Oh, it's just too much for me. So
now I have a dedicated physician just for me, right,
that kind of helps organize this with me. When I
see him, my appointments are like one to two hours
versus fifteen minutes. When I go there, he literally has
gone over all of my old labs, any recent ones,
any notes from all my specialists. He has a plan
(31:00):
what he wants to talk about, and he asked me
what I want to talk about and what are our
next steps. It's just beautiful. I mean, that's the way
it always should be. And I know everybody doesn't have that,
but there's some way that you have to push to
try to get some semblance of that so that you
have some community and somebody around you, right, that can
lift you up, and you know it's hard for you
(31:21):
to do it yourself.
Speaker 1 (31:22):
Well, Rory, thank you so much for your time today
and sharing your stories. This has been so wonderful just
to hear about how you have transitioned and how this
is kind of like, you know, the story of your life,
that this is just you know, making a way and
finding that solution where there doesn't seem like one. So
thank you so much for your time today.
Speaker 2 (31:44):
Well, thank you so much for you know, letting me
share this story. And I hope is that there's somebody
out there that doesn't feel alone when they're able to
listen to this, that caregivers can understand more about what
how this impacts your life life, and then also for
the healthcare professionals to understand that you're more than just
(32:05):
a patient now, you're really a partner with them. And
so that's my hope. Thank you so much, Thank you
very much.
Speaker 1 (32:16):
Rory's story is like so many who have dealt with
the frustration of misdiagnosis and the feeling that their condition
is not being handled properly. Half the battle with autoimmune
conditions is simply identifying them. As an attorney, Rory has
a naturally analytic mind, and paired with his enthusiasm for
finding solutions and a positive outlook, he is a fierce
(32:38):
example of maintaining hope along that journey. Thanks for listening.
Join us on January thirty first for our next episode,
Untold Stories. Life with a Severe Autoimmune Condition is produced
by Ruby's Studio from iHeartMedia in partnership with Argenix and
hosted by me Martine Hackett. Our executive producer is Molly Sosha.
(33:00):
Our EP of post production is Matt Stillo, along with
supervising producer Sierra Kaiser and post producer Sierra Spreen. This
episode was written and produced by Tyree Rush
This podcast is not intended to provide medical advice. Please
talk to your doctor about any medical concerns. 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 Argenix and I'm your host, Martine Hackett.
(00:21):
I'm an Associate Professor and Director of Public Health Programs
at Hofstra University. As a researcher, professor, and public health expert,
I've spent my career studying the complex realities of health
care disparities. On this podcast, I speak with real people
living with severe autoimmune conditions to expand the conversation around
these shared experiences. Every person living with an autoimmune condition
(00:45):
has a unique story to tell. Will uncover how each
journey is unique and powerful, exploring how community and care
are essential parts of each experience. Will also highlight the
importance of self advocacy and support. Today's episode will fl
becus on chronic inflammatory demilinating polyneuropathy or CIDP. You may
remember learning about it in season one when we heard
(01:07):
from Crystal and Scott. CIDP is a neurological condition causing
progressive weakness in the arms and legs. The immune system
attacks the protective layer that surrounds the nerves and the muscles.
This damage causes nerve signaling to fail, which is why
some people with the condition may experience difficulty walking. Today's guest, Rory,
(01:29):
is an attorney who discovered he had CIDP after experiencing
muscle cramps and numbness in his limbs. His fatigue was
so debilitating that he found it hard to walk or stand. Additionally,
his journey included a series of misdiagnoses that delayed him
from getting the care he needed. But ever determined, Rory
(01:49):
continues to cultivate the proper treatment regimen to aid him
in rebuilding his life with CIDP. Good morning, Rory, Good morning,
So good to be able to talk to you today.
Let's begin. What was your life like before getting your
CIDP diagnosis? What were you focused on at that time?
Speaker 2 (02:13):
So prior to my diagnosis with CIDP, I mean I
would describe my life as an opportunity of first and
what I mean by that is it kind of prepared
me annoyingly right for the journey I would face with CIDP.
For example, when I was three or four years old,
I was placed into a foster home. My older brother
(02:35):
and my younger sister were placed together, and now it's
by myself. And I was placed, as you know, a
little African American little boy into an all white community
that had never seen a black person before. So that
was like a first experience for me that kind of
like build up my resilience. Of course, at the time,
I didn't know like why this was happening to me,
but looking back, it really has served me well. And
(02:57):
so from there, probably when I was around I'm ten
years old or so, I then got a doctored by
my grandmother, who at the time was taking care of
thirteen grandchildren, including myself. So you can imagine how difficult
that was to live in the environment like that. But
I managed to be in that national out society. You know,
I graduated and I was the first to ever go
(03:20):
to college. So, you know, I get to college and
I had never had a computer at my home. And
I remember my first day going to college and I'm
going to the computer lab and I see all these
computers and I'm scared to death, right, I don't know
even know how to use this they And then I
had the audacity to try to go to law school. Right,
So yeah, another first, I graduated from law school. I
(03:43):
took the bar exam, and I passed practicing law. You
know how exciting is that? And you can imagine the
opportunities that present themselves, you know, as the first to
do something like that. Then my career goes kind of
just taking off from there. And I had been in
a long term relationship for about twenty sixty years or so, wonderful,
and then CIDP hit and my whole world just changed
(04:07):
in an instant. But I had to rely on then
all of those first I was telling you about that
really came to play to like being resilient to address CIDP.
So that's kind of like what my life was before.
But even like a year before, you know, I have
been traveling. We had been to Saint Martin, the Netherlands, Austria,
all different places, right, I mean, I was just I
(04:28):
love to travel and I was able to do that
with no issue. Fast forward to today and it's life
is a little bit different, but you know, I'm managing
it and I'm doing well.
Speaker 1 (04:37):
Going back to that time, what were some of your
earliest symptoms?
Speaker 2 (04:41):
The first one I remember is the fatigue, and I'm like,
this is just unusual for somebody of my age. But
then it progressed into not just fatigue, but exhaustion. So
I would sleep all weekend long, you know, once Friday
I just crashed. I would sleep all the time, and
then I already to get weakness in my arms and
(05:03):
my legs, so it became difficult to even like carry groceries.
You know. I would be very winded. I had bloating,
severe weight gain, like probably like thirty pounds. I also
had severe muscle cramps. And I'm not talking about like
you know, a little Charlie horse. These are muscle cramps
that would last from fifteen to forty seconds, but they
(05:28):
would be so intense that they definitely would make me nauseous,
almost made me vomito, and definitely put me into tears.
I also had these weird sensations in my body. For example,
my skal would be burning like it was on fire.
My face might be twitching a little bit, my arms
would be like somebody was stabbing them, and then my
(05:52):
thighs would be like kind of tingling, and then my
feet would be numb like all this would be happening
at the same all these different sensations at the same time,
and that's, oh my gosh, there's something really going on there.
You know. I did some research, and I was trying
to find a doctor who was a neurologist and that
kind of you know, knew about some of these symptoms.
So I was fortunate enough to find a very good one,
(06:14):
and I remember the first day I went to his
office and he you know, examined me, and he immediately said,
I think you have something out of immune going on.
I don't know what it is exactly. I think it
might be multiple scrols, but I'm not sure. He is, like,
so we're going to have to go down this path
of doing lots of tests and ruling things out to
(06:35):
figure out what is going on with you. The first
thing I remember doing was having an MRI done of
my head. From there, I also had the EMG like
the nerve conduction study test where they put these electrodes
on your body to see, you know, how the response goes.
(06:55):
And then they also put like these needles into your
muscle area and they move it around. Oh, oh my gosh,
so that is thinking about it. Yes, Oh my gosh.
That is the most unpleasant thing in the world, you know,
so like they're moving these things around and electrodes are
popping all over the place. But I remember when it
got down to my wrist, I screamed so loud because
(07:17):
like there's this huge electrical shock that went too And
I think at first the doctor who was doing the
test was kind of upset with me. He's like, what's wrong,
what's wrong. I'm like, what do you mean, what's wrong?
Speaker 1 (07:27):
Just have an electric shock.
Speaker 2 (07:29):
Right, exactly right. What's important about this is that he
told me, I think you have carpal tunnel. He's like,
but the thing with us is that all the symptoms
that you're describing don't necessarily all fit. Carple tunnel doesn't
describe them all. Right. From there, I had I would
say probably up to twenty four blood tests ranging from
(07:53):
the normal right just CBC to iron to you know,
making sure you don't have any you know, ScDs or
there's something else autoimmune, certain types of cancers, you know,
on and on and on. So once all of those
things come back fine, then you start getting into the
other way stuff, right, trying to figure out what it is.
Speaker 1 (08:12):
Like the next level, yes, and so it sounds like
you're meeting then with different specialists, and how do you
prepare for those different meetings to get that right diagnosis.
Speaker 2 (08:22):
Once I found this person who was the expert, he's like, look,
you know, we have to go through this process. But
it took months. And I recall as we were still
doing the test, going into an office visit with him
and saying, if you do not figure out what's wrong
with me within like a month or two, like, I
(08:45):
am not going to be walking because the deterioration was
happening so fast. Wow, I mean it was the point
there where my balance was completely off. I couldn't turn
around in the shower. I had to hold on to
the walls. That's how you know. Everything was changed on
me so fast and I couldn't move my toes.
Speaker 1 (09:03):
How did you deal with that period of uncertainty around
your condition at that time?
Speaker 2 (09:08):
Well, fortunately the doctor that was working with me, we
really built a strong connection, right, and it was more
than just like I was the patient and he was
a doctor. You know, we really were like a partnership.
He's like, you know, and he's like, look, I need
you to tell me what's going on. And so I
was very honest and upfront with him, and he was
(09:29):
with me. Although I was like anxious about what my
future would look like, I felt like I was in
really good hands and that he was doing the right
thing by me, even though it was taking longer than
I would have wanted. The final thing was a spinal tap, wow,
and figured out it was the IDP.
Speaker 1 (09:47):
So it sounds like it was you had a true
disease detective, you know, working with you.
Speaker 2 (09:51):
Yes, I could tell that he was very skilled in
dealing with this issue. And in fact, he is one
of the heads of the multiple ross centers right that
also includes other immune conditions, so he sees lots of
patients that have these issues, not as many of course
the IDP, but he knows how to document these right
(10:11):
to get his patients to the treatment that they need.
And that was obvious to me.
Speaker 1 (10:15):
And so I mean, now you have the CIDP diagnosis,
how did you find support within your professional and personal
communities while dealing with it?
Speaker 2 (10:24):
So at first it was very lonely and very scary.
I mean, really the only person I had was this doctor.
But one of the first things he did, he said, Rory,
I'm going to have you see a neuropsychiatrist. I'm like, well,
why right, I'm thinking to myself, He's like, you're going
to need the support, and you're going to need to understand,
you know, what this means for long term and this
(10:46):
person is skilled at helping people like you that they
don't have any mental conditions, but this is going to
change the way you live your life. Yeah, And so
what a wonderful asset has been.
Speaker 1 (10:59):
Oh, I'm so glad to hear that this is somebody
who's really you know, who understands what you're going through
and is able to kind of support you all the
way throughout.
Speaker 2 (11:07):
Yes, And in fact they're in the same network. Okay,
and so this doctor's able to see my doctor's notes
and things like that, and he's a neurologist himself, right,
being a neuropsychiatrist or he understands the condition.
Speaker 1 (11:21):
That's amazing. And so that seems like, you know, just
a great confluence of a you know, specialists who it
seems like it's probably like a thousand years of school,
but you know that they're able to be prepared and
be there for you.
Speaker 2 (11:34):
Yes, absolutely, just absolutely wonderful.
Speaker 1 (11:37):
When we were on earlier, I saw all your degrees
behind you, and so as an attorney, what are some
of the ways that your legal background has informed your
approach to navigating the healthcare system and your treatment options
for CIDP.
Speaker 2 (11:52):
Well, one, I'm a researcher, right just by profession, and
so that has really helped me become knowledge about my
own condition. So I actually research it and I learned
about you know, what does it do, even down to
the medication that I take. I started out with intravenious treatment,
but it took me probably about seven months or so
(12:14):
to see real improvement. But I understood from others who
you know, had treatment like within weeks to months or
a month or so, you know, they saw rapid improvement,
and I wasn't seeing that, right, and so I was
being I mean, I was kind of very discouraged by that.
But after the seven months or so, I switched to
substutaneous infusions. In fact, I was in occupational therapy and
(12:36):
physical therapy at this at that time, and they had,
you know, two weeks before, had tested my strength and
I wasn't even anywhere near where I should be. Fast forward,
they test me and my strength is better than the
average for somebody of my age. What, Yes, that's awesome.
Speaker 1 (12:56):
So it worked.
Speaker 2 (12:57):
Oh it worked. I'm like, oh my gosh, I could.
I was a static, right, yes, wonderful.
Speaker 1 (13:03):
Worry, where do you go for your resources and your research?
Speaker 2 (13:07):
For research? I will look at and I'm very careful
about the sources that I that I look at. So
I usually definitely will go to NIH for sure and
look at their research studies and what they said.
Speaker 1 (13:18):
National Institute of Health, Yes.
Speaker 2 (13:20):
And then neurology journals. I look at those, and I
look at the peer reviews to see, you know, what
they're saying about it. So oftentimes I will take articles
that I that I find and I'll bring them to
my neurologists and say, oh, look what I found. So,
I mean, it's just an example of just coming together
and talking about you know, what did you find and
(13:41):
what we can do from here, and him.
Speaker 1 (13:43):
Not feeling threatened that you know, here you are coming
with this information challenging him.
Speaker 2 (13:48):
I have to say that I'm very fortunate because my doctors.
That's one of the things I love about me is
that I come to the table with ideas and things
that I learned, and I don't do it in a
threatening way at all. Yeah, it's really more about a partnership.
And I think they like that because I can actually
articulate to them what it is I'm feeling, what am
I doing, and why do I want to take a
(14:10):
certain action that I want to take or don't want
to take one? And I think that they all would
tell me it helps them treat me better.
Speaker 1 (14:17):
So you're advocating you're taking active role in your treatment. Yes, wonderful.
So let's talk about the people around you in your life.
How do you help them to understand your diagnosis and
the impacts of CIDP.
Speaker 2 (14:30):
So I normally am more of a reserved type of person.
You can't tell them now, right, I'm out of my show, Nope,
but I yes, right, So, like I really was, you know,
I would talk to people if they talked to me
and stuff like that, but just for me to like
to be self engaging and like get all involved, I
really didn't do that. But I think that was more
about like my history or my background, you know, just
(14:52):
because of you know, I was always kind of on
the fringes. But once this condition came, I'm like, okay,
well I have to do something here, right, How am
I going to ge support? And I don't know anybody
that has this condition. So one of the things I
did was with my family, I would take pictures of
myself by doing certain things, but say like my scuff
(15:14):
was already right, I would literally take a picture of
it so they could see. So I wasn't just telling
them I see right, so they could actually see for
themselves what I'm really going through. I would show them
pictures of you know, my cane. The visual right is
so important. It's more than just telling them because they
can't they can't tell they don't live your experience, right,
(15:36):
but they have something that they can identify with that
they've seen other people have. And then I sent them
there's a one, maybe a two or three minute small
little clip video of what is CIDP from the GPS
CIDP Foundation. It's a great video. You know, it's kind
of like animated in a way, and it you know,
(15:57):
it talks about you know, how it makes you feel,
what the symptoms.
Speaker 1 (15:59):
Are are, and it really breaks it down.
Speaker 2 (16:01):
It really breaks it down, you know, and it's a
great resource everybody. I send that to my friends and
my family, they're like, oh, thank you for sending this
to us, you know, that helps us understand better what
you're going through. But even with that, I think the
best tool is when they see it like in person,
(16:22):
like oh my gosh, like this is not like this
is for real. And so if you don't mind, I
want to give you like two quick examples.
Speaker 1 (16:28):
Okay.
Speaker 2 (16:29):
The first one is when I was doing therapy, a
nurse had to be at my house with me right
to administer it. Yes, and I live on the thirteenth
floor in this high rise apartment building, and this particular
day there was a fire along and so we had
to like go down the stair to get up of
the building. I did not know and she did not
know that I couldn't walk down the stairs. Gosh, that
(16:49):
was the first time. I mean I was in shock.
Actually like wait a minute, feet moved, Yeah, exactly. I
mean I'm like, oh my gosh, like what am I
going to do here? And she's like, ohor that I
didn't know that this was at the stage of disability
for you, because you look so strong and everything, like
I didn't you know, I didn't know this. So I'm like, well,
what are we going to do? She's like, what you're
(17:09):
going to hold on to the railing and then I'm
going to be on your other side and We're just
going to do one step at a time. Thirteen flights, Yes,
thirteen flights. So I finally get downstairs, right, and we
get outside and do you know that somebody had burt
popcorn and they told us to come back in.
Speaker 1 (17:25):
Oh, like, everything's fine, let's.
Speaker 2 (17:29):
Go right right. So anyway, I guess that with like
a very that's an example of someone seeing it for themselves,
don't including me, right, But.
Speaker 1 (17:38):
Like you said, you'd come off so strong and you
look fine, and it's just not until they actually can
see what it is that you're going through that it
just hits home exactly right. 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
(18:00):
severe autoimmune conditions, Ourgenics is dedicated to shining a light
on resources that support the CIDP, 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
(18:21):
joyful life. Shining through CIDP features real stories, tips on
emotional self care, and new ideas to help navigate the
CIDP journey. For more information, visit Shining THROUGHCIDP dot com.
And now back to untold stories. Let's talk about your strategies.
(18:47):
Do you have any specific strategies you've developed to address
these physical and emotional aspects of living with CIDP.
Speaker 2 (18:54):
I mean, first of all, you know, definitely spiritual. I
mean I just I rely on you know, God to
just direct me and to help me, you know, have
the strength to get through things every day. So I
just changed my mindset about like how I feel about
the condition, understanding that I don't have to do everything
all at once, right pacing myself. So initially when I
(19:18):
was diagnosed, when I would get like this birth of energy,
I'm like, oh, I have this energy now, so let
me do everything. Let me sweet, let me clean the bathroom,
let me you know, let me do my laundry, like
all these things I was trying to do. Right, Oh
my gosh, not a good idea. Let me just say,
because you pay for it the next day. But I've learned,
(19:38):
like over time, to like Okay, you know what I
can do one little laundry today, I can do it
enough load tomorrow. Right. So that's how I've started dealing
with some of the physical like limitations that I have.
Speaker 1 (19:52):
Right.
Speaker 2 (19:53):
And then from just a work perspective, I've been very
fortunate and that my employer lets me work from home
full time.
Speaker 1 (20:01):
Wonderful.
Speaker 2 (20:03):
So that has been a game changer because if I
had to do it in person, I mean, I don't
think I would be able to do it. So I
mean that has just been truly wonderful. And then in
terms of support GBS CIDP Foundation, they have a lot
of them, asked the expert seminars, so I tried to
(20:23):
listen to as many of those as I can. They
have like coffee chats with other people across the country
that have a CIDP, so I've been able to meet
some people through there that otherwise wouldn't meet. A few
months ago, I attended the first annual conference here in DC,
oh Okay, and that was awesome to see all these
(20:45):
people at various stages right with their CIDP coming together
as a community. I never felt so good in my life, right,
I mean it just to see somebody else and talk
to them like, what is your experience? What do you do? Right?
Speaker 1 (21:00):
And they know exactly what you're talking about.
Speaker 2 (21:01):
That I know exactly what you're talking about. You don't
have to apologize, right, You're just explain exactly you just
you are you are. And you know, one of the
things that stood out from me that although all of
us were at different stages in our CIDP, you know,
the limitations and all that were a common reality. There
were two One was actually there were three. One was
(21:25):
the amount fatigue everybody said they had. It didn't matter
if you were like what they called so called in remission.
They were still fatigued. People that are you know, were
in you know, wheelchairs fatigued, and then people like me fatigued. Right,
It's very interesting that everyone's still this is like a
common thing. The other thing is the feeling of particularly
(21:47):
when you first get diagnosed, isolation.
Speaker 1 (21:50):
Yeah.
Speaker 2 (21:51):
Everybody told me that they felt alone, even though they
had loved ones maybe surrounding them, which is great, they
still didn't have somebody that they could say, how do
you feel right? You know, what do you do when
you have these symptoms? It resonated with me. Yeah, I
get that.
Speaker 1 (22:08):
And then you said there's a third thing, yes and no,
I forgot y got it. So you mentioned about connecting
with others and meeting other people with CIDP. Do you
have any tips or how to push through the challenges
and symptoms of CIDP and find meaning, happiness, and maybe
(22:29):
even joy in life.
Speaker 2 (22:32):
So for me, when everything changed was when I decided
that I was going to become an act to participant
in my health, not just sit back and let the
doctors tell me what to do. Yeah, once my mindset changed,
then I could see this as it's a new life,
(22:54):
but I have opportunities and not only am I surviving,
but I'm thriving. And there's a huge difference between the two.
Some of the things I've done, I participated in an
interview panel. They're trying to see like what's a daily
life with people at CIDP. So I've done that. There
was a company that was trying to come up with
a new way to deliver plasma to individuals IDP, and
(23:18):
so they actually came to me and they had the
setup where they showed me a video. Then they had
the apparatus out and they had me looking at it.
They're like, Okay, I want you to act as though
you're doing your own self infusion. And then I was
able to tell them things that are good about it
since that were bad about it. Was that was so
(23:39):
empowering because there were things that I've always wanted to say,
like who and the heck came up with this idea? Right?
Speaker 1 (23:46):
You told them?
Speaker 2 (23:46):
Yeah, So I was able to tell them things like
that all changes the way you feel. You have a
little bit sense of control right over something that you
know you seemingly don't have control over, but you have
to control over how you about it.
Speaker 1 (24:01):
That's right, And it sounds like also to this, like
you said, it fits within your the story of your life,
the story of Rory, right in terms of just always
being the one to kind of like take a situation
that's not great and you know, make a way out
of no way.
Speaker 2 (24:14):
Exactly. Yes, wonderful.
Speaker 1 (24:16):
And so can you talk about what you mentioned this
a little bit about what adjustments that you've had to
make to stay positive in your CIDP journey. How has
your experience with CIDP influenced your approach to self care
and overall well being.
Speaker 2 (24:32):
So this came along with practice and acceptance of the
condition itself. So what I mean by that is, I
think I told you that it was difficult for me
to take a shower, right, like I would have to
hold on to the walls. So I remember deciding, you know,
it's time for me to get one of those seats
that I put in the topic.
Speaker 1 (24:53):
Right.
Speaker 2 (24:53):
That was so hard for me because that was the acknowledgement,
right that in fact I have this limitation, I see,
but you know, I got it, and I'm you know what, Actually,
this isn't making my life better, right, this is easier
for me to take my shower, you know. So as
you start doing practicing things like that, you realize that
self care is important and it doesn't really matter what
(25:15):
other people think. You just need to take care of yourself.
Speaker 1 (25:19):
So it sounds like CIDP sort of has changed your
outlook on caring for your overall health.
Speaker 2 (25:25):
Yes, it has my overall health and not to mention
and I never really thought about this before, but my
mental health. Hmm, there is such a connection between the two.
I never really you know, I knew intellectually, yes, but
going through this experience, you have to take care of both.
Because when I know, when i'm stressed, I immediately feel
(25:49):
the symptoms. Interesting, my skin burned so bad when I'm stressed,
like immediate, it's not like you know, a delay. Then
I know that I'm not taking care of myself. I'm
not handling the situation the way I should.
Speaker 1 (26:03):
Because if you handle a different way, you can feel
a difference in your body.
Speaker 2 (26:06):
Yes, correct, And sometimes you know, part of this is
letting things go. Yes, letting people go, which is hard.
It's I mean, you find that your circle is small.
Even people that love you and care about you, they
don't get it, and so you can see them they
(26:26):
don't really know how to respond to you, so they
stop engaging m And then at that point you have
to decide for yourself, well, is this a good thing
or is this a bad thing?
Speaker 1 (26:37):
Am I going to chase them?
Speaker 2 (26:38):
Right? And initially I did, right, I still wanted this relationship,
but it made me feel bad. Yeah, and what did
it do? It changed my symptoms?
Speaker 1 (26:50):
Right, And then I basically felt it.
Speaker 2 (26:51):
Yes, Yes, I'm not gonna do that anymore. If they're
not in my circle. They're not in my circle. It's
a hard thing to go through. It really is hard,
but you you have to do it if you're going
to thrive, now survive thrive mm hmm.
Speaker 1 (27:06):
There season for a reason, right, There's some people who
are in your life for different times, right, Yes, And
have you encountered any misconceptions or biases regarding CIDP within
your communities, your professional circles, and if so, how do
you address them?
Speaker 2 (27:22):
Yes? So in my professional circles, I think part of
the reason that there's misconceptions with it because actually I've
shared that video that I'm mentioned to you nice with
my with my team as well as my supervisors. I've
been very open about that, which I think has helped me.
But they still have misconceptions about what does it really
(27:44):
feel like to be fatigued? What does it really feel like?
They have muscle weakness? Because I see me and I
look good, right, I sound strong, and so the weakness
to them doesn't ever show through, But they don't know that,
like it takes me longer to do my work and
so therefore I'm working at night when I'm already fatigued,
trying to catch things up. Yeah, all they know is
(28:05):
the next day they have a really good product, you know,
and now what it took to get there? Right exactly.
So they're missing all of this stuff and I'm still
trying to struggle with trying to get them to understand
how does that work? Right? Because they don't see any
of that. So that is something I'm still actually trying
to work on. How do I get them to understand this?
(28:27):
And maybe they won't, maybe they can't, you know exactly.
So that is, you know, an area that is you know,
kind of difficult.
Speaker 1 (28:35):
I think, yeah, And that's the thing, right, you can
just keep doing what you're doing, and it's it is.
It might be something that's just invisible to them forever.
Speaker 2 (28:44):
That's right.
Speaker 1 (28:45):
So finally, Rory, what words of advice or encouragement would
you share with someone who is newly diagnosed with CIDP.
Speaker 2 (28:54):
So I would say, give yourself the grace and the
space two come to terms with your condition right to
understand that, yes, your life has changed, you have to
acknowledge it, because that's the only way that you can
move forward. If you don't, all you're going to do
is try to survive, and you're not going to thrive.
(29:16):
The only way to thrive is to acknowledge what's happening,
and then from there you open yourself up to the
possibility of learning more about your condition, sharing your condition
with others, and finding a way to just mentally feel
better about your new life.
Speaker 1 (29:32):
And then maybe, like you said, partner with your care
providers and you know, find a way to have that
advocacy and education and encouragement for others.
Speaker 2 (29:43):
Yes, you have to find a community a family. If
you don't people surrounding you are that you create your own.
And that's really credit what I have done.
Speaker 1 (29:53):
You know.
Speaker 2 (29:54):
When I first started, I had my providers who we
are all in different networks, and so now they are
all in the same network for the most part, and
they talk to one another. They'll call one another about
me and say, oh, Rory was in my office today.
This is going on, and I want to prescribe this medication.
You know, it's just going to impact you know, what
you're doing over here, which is wonderful, you know. And
(30:17):
they'll call me and let me know what's going on.
They're like my family, they really are. Like they're not
just my doctors, but I feel I could call any
of them at any time. And then I actually signed
up for what they call a concierge type service because
I was having difficulty of organizing all my medications, all
these different appointments, you know, all these different specialists just
(30:38):
organizing it. Oh, it's just too much for me. So
now I have a dedicated physician just for me, right,
that kind of helps organize this with me. When I
see him, my appointments are like one to two hours
versus fifteen minutes. When I go there, he literally has
gone over all of my old labs, any recent ones,
any notes from all my specialists. He has a plan
(31:00):
what he wants to talk about, and he asked me
what I want to talk about and what are our
next steps. It's just beautiful. I mean, that's the way
it always should be. And I know everybody doesn't have that,
but there's some way that you have to push to
try to get some semblance of that so that you
have some community and somebody around you, right, that can
lift you up, and you know it's hard for you
(31:21):
to do it yourself.
Speaker 1 (31:22):
Well, Rory, thank you so much for your time today
and sharing your stories. This has been so wonderful just
to hear about how you have transitioned and how this
is kind of like, you know, the story of your life,
that this is just you know, making a way and
finding that solution where there doesn't seem like one. So
thank you so much for your time today.
Speaker 2 (31:44):
Well, thank you so much for you know, letting me
share this story. And I hope is that there's somebody
out there that doesn't feel alone when they're able to
listen to this, that caregivers can understand more about what
how this impacts your life life, and then also for
the healthcare professionals to understand that you're more than just
(32:05):
a patient now, you're really a partner with them. And
so that's my hope. Thank you so much, Thank you
very much.
Speaker 1 (32:16):
Rory's story is like so many who have dealt with
the frustration of misdiagnosis and the feeling that their condition
is not being handled properly. Half the battle with autoimmune
conditions is simply identifying them. As an attorney, Rory has
a naturally analytic mind, and paired with his enthusiasm for
finding solutions and a positive outlook, he is a fierce
(32:38):
example of maintaining hope along that journey. Thanks for listening.
Join us on January thirty first for our next episode,
Untold Stories. Life with a Severe Autoimmune Condition is produced
by Ruby's Studio from iHeartMedia in partnership with Argenix and
hosted by me Martine Hackett. Our executive producer is Molly Sosha.
(33:00):
Our EP of post production is Matt Stillo, along with
supervising producer Sierra Kaiser and post producer Sierra Spreen. This
episode was written and produced by Tyree Rush
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