September 18, 2024 • 31 mins
Craig’s CIDP journey began in college when growing symptoms and fatigue halted his running career and confined him to a cane, then a wheelchair. But from the very beginning, Craig remained positive and focused on finding answers. Having seen some videos about CIDP, he worked with his doctor to determine his official diagnosis. Craig’s curiosity and hunger for problem-solving inspired him to explore holistic approaches to supporting his overall health. Now Craig uses his experiences and creativity to pay it forward and connect with others through his own YouTube channel. Though his life took a considerable pivot, Craig navigates his health journey with a bit of humor and a lot of gratitude.
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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's Studio in partnership with Urgenics, 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 autoimune conditions like Mayasthenia 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 l liked 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. In today's episode, we're zeroing in on the
(01:14):
transformative power of gratitude and its powerful influence for those
managing CIDP and other autoimmune conditions. Living with CIDP may
come with its fair share of daily hurdles, including complex
treatment protocols and significant lifestyle adjustments. Today, we'll explore how
embracing gratitude can do more than just help you cope.
(01:36):
It can also help reframe challenges into new prospects that
enrich life, instilling a sense of fulfillment and hope. Today
we're joined by Craig, a true example of how gratitude
can reshape one's experiences. Initially misdiagnosed with gion Bray syndrome
during college, Craig endured escalating fatigue and symptoms that halted
(01:58):
his running career and resulted in his need for a
keene and eventually a wheelchair. But armed with determination and
a hunger for answers, he used his own research to
work with his doctor to find the correct diagnosis of CIDP.
Now fully adjusted to life with his condition, he uses
his YouTube channel at No Egg Craig to share his
(02:18):
story with others who are searching for support. As we
delve into Craig's story, we'll see how his gratitude has
not only helped him navigate his health challenges, but has
also turned them into a way to connect with his
larger community.
Speaker 2 (02:38):
Hi Craig, Hi Martine.
Speaker 1 (02:40):
So Craig, Let's start with the beginning. You were an
athlete studying physiology when you first started to experience symptoms.
Tell us about it. Where were you, what were you doing,
and do you remember any specific moments during the onset
of symptoms.
Speaker 3 (02:56):
I actually remember a lot of specific moments because the
time I was getting ready for indoor track in college,
and our coaches had us keep like a running journal,
so I know everything to the date when it happened.
So November one, twenty eleven, that's when I just got
like a random cold. And then after a couple of days,
I was like, okay, like I feel normal again. But
(03:17):
it seemed like fifteen minutes into every run or every practice,
my body would start to just feel.
Speaker 2 (03:23):
Very like weak.
Speaker 3 (03:25):
I couldn't run as fast, and I couldn't figure out why.
It just seemed like every time that like my internal
temperature went up, I just felt really really weak and
we couldn't fgure out what it was. Over time, it
steadily got worse and worse, and then anytime there was
external heat as well, like when I would put my
hands in the dryer to get my clothes out, my
hands would go kind of like numb and tingly. So
at that point, in the back of my mind, I
(03:47):
was kind of like, I feel like this is something
neurological because it's not only affected my muscles but also
like how I'm feeling things in the world. But at
the same time, I was like, I'm nineteen, Like nothing
neurological happens in nineteen year olds, you know, little did
I know. So it got to the point where, like
when I was finishing my runs, it was hard for
me to stop.
Speaker 2 (04:06):
My body would just keep going with like the momentum.
Speaker 3 (04:09):
I remember one time my sister was saying that I
was being dramatic, and I was like, no, I literally
am having a hard time.
Speaker 2 (04:15):
Stopping from running.
Speaker 1 (04:17):
My gosh.
Speaker 3 (04:18):
Eventually, I got like tested for like a bunch of
stuff that like runners usually would get tested for BE
twelve deficiency mono is relatively common as far as like
really affecting your athletic performance, iron deficiency. Everything came back negative,
which was great that it was healthy, but also frustrating
because I was like.
Speaker 2 (04:34):
I know, it's not my head there's something wrong.
Speaker 3 (04:36):
Yeah, yeah, exactly, Like I was looking forward to a
diagnosis because at least I wanted to know what I'm
up against and then you can fight it whatever it is.
I even got tested for MS that came back negative,
and eventually I was referred to a neurologist and then
he diagnosed me with Giambray syndrome and he said that
(04:57):
it was the most mild form he had ever seen,
and I was like, I would love to hold that title.
That's awesome. Yeah, so I was excited about that. I
was like, finally I got a diagnosis. And he was like,
you know what, since it's so mild, we're actually not
going to have to do any sort of medication. It
should just reverse itself. So I was like, that's even
better news. And then a week before school started. This
is in early twenty twelve, I got a spinal tap
(05:19):
for the official diagnosis because that actually came back positive.
Speaker 1 (05:24):
For people with GBS and CIDP, spinal fluid usually has
more protein than normal, but it doesn't show changes in
the white blood cells or pressure, so a spinal tap
is a good way for doctors to identify these conditions.
Speaker 3 (05:40):
So I finally got a diagnosis because my cerebral spinal
fluid protein was like four times what it should have
been or something like that. So he was like, yes,
this is a clear diagnosis. So I was like, Okay, cool,
we finally know what it is. And after I got
these spinal tap I think my spinal column just didn't
completely close up because I had spinal headaches for about
a week. And spinal headaches are like really really excruciating headaches,
(06:03):
But it's only when your head is above your spine.
So if you're laying down horizontal, you don't feel any pain.
If your head is below your spine for some reason,
then you don't feel any pain. But it's the second
that your head comes up above your spine that it
starts to hurt really bad.
Speaker 2 (06:17):
So I was given like hydro codone.
Speaker 1 (06:20):
According to mrk Manual, low pressure headaches or spinal headaches
occur when the fluid that cushions the brain is removed
during a spinal tap, or it leaks out because of
a tear or as cyst in the tissue layers around
the spinal cord. With less of this protective fluid, the
pressure around the brain drops, causing the headaches that Craig
is referring to.
Speaker 3 (06:44):
That was the only way that I was able to
actually shower yahn hydros and they said caffeine helped, And
I'm not a coffee drinker, so I was just drinking
a bunch of like mountain dew actually at the time.
Speaker 1 (06:53):
But meanwhile, like school's starting and it's like, what are
you going to do?
Speaker 3 (06:57):
I was like, Okay, well, if I'm can't go to
the first week of school, which is like a really
important week. And then also at the time, we didn't
completely understand Ganberra syndrome because I've heard of people who
just wake up paralyzed, and I was like, what if
that happens while I'm sleeping and I wake up like,
I'd rather have my friends and family be there, like
so the for a couple of months, when I would
wake up in the morning, the first thing I would
(07:17):
do is just like move my arms and legs just
to make sure I wasn't paralyzed. And I was like, Okay,
at least I'm not completely paralyzed.
Speaker 2 (07:22):
Today.
Speaker 1 (07:23):
That's not a good way to you know, live your life.
Speaker 3 (07:26):
No, no, no, yeah, it's you know, not as fun
as it sounds. So I was like, Okay, I'll just
take that semester off of school, and I was like,
you know what, I want to make the best of
this time, though, I'm not just going to stay home
play video games or something, because initially I went to
school for exercise physiology and kinesiology with the idea of
being an NCAA track and cross country coach. So I
volunteered at my local high school to be a track coach.
Speaker 2 (07:49):
The season went great.
Speaker 3 (07:50):
Actually, I had a lot of fun and definitely gained
a lot of experience. But as a season went on,
I started to get like worse and worse, and I
was kind of just in denial like the whole because
I was like, oh, no, you know, I just did
too much physical therapy yesterday, or it was like it's
too hot today or it's too cold today, which kind
of happened in upstate New York.
Speaker 2 (08:08):
Yeah, it could be too hot one day, too cold
to night.
Speaker 1 (08:11):
Got it, so always a reason to you know, be
able to explain why you're feeling what you're feeling.
Speaker 3 (08:16):
Yeah, because I didn't want it to be true that
I was actually still getting worse.
Speaker 1 (08:20):
Because you were told like it should be resolving itself,
like this should be clearing up exactly.
Speaker 3 (08:25):
So eventually I got to a point where it was
like too much to deny. So I was just going
on Google and YouTube and stuff, and eventually I found
something called CIDP and I started reading about that, and like,
the main difference between CIP and GBS, to my understanding,
is that CIDP happens over a much longer time frame,
where is GBS is much shorter. And that matched exactly
with what I was going through because this story so far,
(08:47):
it started in November, and by this point it was
around like late June, I think by the time that
I reached out to my neurologist and I just sent
him an email said hey, I think I don't have GBS.
Speaker 2 (08:58):
I actually think I have CADP. Like I'm still getting worse.
Speaker 1 (09:00):
Wow.
Speaker 3 (09:00):
And then he got me in basically like the next
day and then he confirmed my diagnosis.
Speaker 2 (09:04):
You're like, yeah, you have CIP and not GBS.
Speaker 1 (09:06):
Oh gosh, yeah.
Speaker 3 (09:07):
Well, I mean at the same time, when you hear
huff prints, you think horses, not zebras, and GBS is
a bit more common. And I could tell he felt
terrible because I know personally they're just understaffed over there
at that neurology place. So like, I really felt for
him because I know that I knew that he was
doing the best he could.
Speaker 2 (09:21):
And he just made an honest mistake.
Speaker 3 (09:22):
And I was just like, hey, you know, is there
anything else that we can do, Like can we try
plasma foresis?
Speaker 2 (09:28):
And he was just saying, it's much more invasive.
Speaker 1 (09:31):
The Cochrane Database of Systematic Reviews explains that plasma phoresis
or plasma exchange is a treatment where your blood is
drawn and sent through a machine that filters out plasma,
or the liquid part of your blood, and replaces it
with a substitute. Your red blood cells are kept and
return to your body. This helps clear out potentially harmful substances,
(09:51):
including the removal of harmful antibodies.
Speaker 3 (09:56):
But it was tough because I was like, I'm still
getting worse, and like the worst it gets, the less
likely you are to make like a full recovery, which
is what I was thinking of. So he was like, Okay,
I'll put you on some steroids as well as the
IVG and we'll see if that helps. I don't know
if it was the steroids or if it was just
the timing. But things started to turn around, Like maybe
a week or two after that, I started being able
(10:18):
to be better in my sit to stand transitions. Still
not great. I still need like a lot of assistance.
Like I couldn't stand up on my own. At this point,
I'd lost like probably thirty pounds of muscle or so. Wow.
Speaker 2 (10:28):
Yeah, I was very, very skinny at the time.
Speaker 1 (10:31):
I mean, Craig, as we know, the emotional journey is
obviously just as powerful as the physical one, and so
can you recall how you were feeling in those early days?
Speaker 3 (10:40):
It was actually the hardest in the beginning because I
just didn't know what was going on for me. Once
I know what's going on, it's a lot.
Speaker 1 (10:45):
Easier because what was that feeling like, is it just
sort of like, you know, just your mind was racing
with all the different possibilities.
Speaker 3 (10:52):
Not necessarily like racing, but just like uncertain about my future.
Speaker 1 (10:57):
Because you're nineteen at this time, right and you had, like,
you know, it sounds like you had your future pretty planned.
Speaker 2 (11:04):
Yeah, So it definitely threw like a wrench in the works.
Speaker 3 (11:07):
And as I just kept getting worse, I was kind
of always just subconsciously taught like my parents never told
me this, but my mom, I noticed, would always kind
of hope for the best and plan for the worst.
So I started kind of preemptively learning more like computer
based things. I was like, look, maybe I can get
into graphic design, because like, no one's gonna want to
hire like a paralyzed track or cross country coach, you know,
(11:28):
so there when I hire someone who can like show
them how to do the drills and stuff. So I
was kind of like hedging my bets because I had
no idea what my future held once I got the diagnosis.
Speaker 2 (11:37):
And even still when I was.
Speaker 3 (11:39):
Like very paralyzed, I was always thinking like, you know,
at least I had nineteen years of using my legs.
Some people never got to use them wow, or as
also thinking like I have a roof over my head,
I have friends and family who love me. I know
where my next meal is coming from. I live in
a first world country where I have access to medication
because there's other people who like there is no light
at the end of the tunnel.
Speaker 1 (12:00):
Craig's story really underscores the power of gratitude. Even during
his toughest times, he focused on what he still had
years of mobility, a supportive network, and the basics like
shelter and food. This perspective not only helped him cope,
but also brought a sense of hope and resilience, reminding
us that gratitude can be a lifeline even in the
(12:20):
most challenging circumstances. And so you're saying that you had
that sense of uncertainty, especially in that time period before
you had that final diagnosis. Did you feel that uncertainty
with your support system.
Speaker 3 (12:35):
No, My family was very supportive and helpful, and we're
a very sarcastic, jokey family. My friends are too, so
we would always make jokes about like I'm just not
getting up from the couches, I'm being lazy, stuff like that.
But then my friend would always he worked at a
movie theater at the time, so he would always take
me and like you know, push me in my wheelchair
to go like see some movies and stuff for free.
Speaker 2 (12:56):
So that was nice. I still had friends to hang out.
Speaker 3 (12:58):
With or like I went to my friend's pool because
I could actually sort of stand up and like move
around a little bit in the pool.
Speaker 2 (13:05):
Because you weigh like, you know, ten percent of what
your normal body weight, is sure. Yeah, so that was nice.
Speaker 1 (13:10):
So it sounds like people really kind of like plugged
into what it is that you needed at that time.
Speaker 2 (13:15):
Yeah. Like I just wanted to like stay positive the
whole time too.
Speaker 3 (13:18):
Because people who knew me before and would see me
like with crutches, BECAUSEY knew that I was like a runner,
they would see me like what happened? I'd be my
parachute didn't open, or I would just be like you
should have seen the other guy, and then eventually would
slip in like I've got an autoimmune disease and like
now I'm like becoming paralyzed. And then they would be like, well,
I don't know which one's true.
Speaker 1 (13:36):
I was like one of them, two truths in a lie.
Speaker 2 (13:40):
Yeah, exactly. Yeah.
Speaker 3 (13:41):
I was just like, you know what, this is my life.
There's nothing that I can do right now. If I
can change something, then I will. If I can't change it,
then I'm going to make the best of it. You know,
I had the opportunity to make those jokes. I didn't
have that opportunity before. I know, it's like really simple.
Speaker 1 (13:55):
It didn't present itself until then.
Speaker 3 (13:57):
Yeah, you know, pros and cons. Obviously I would rather
have different pars and kinds of being able to use
my legs. But I was like, Hey, this is the reality,
this is what I'm dealing with. And also I think
we all know that, like in a couple decades, like
we're all going to have a story to tell, Like
I could tell the story about how I got depressed
and I didn't do anything, or I could have a
(14:18):
much better story of like how I was like really
happy and positive the whole time, even when I was
going through like the hardest period of my life.
Speaker 2 (14:24):
You know.
Speaker 1 (14:25):
Yeah, So it sounds like you're super aware even then
of like the options you had in terms of how
you were going to deal with this condition. So can
you talk about some of those next phases were in
your CIDP because you experimented with various diets, including paleo
gluten free raw veganism. So what prompted you to explore
(14:46):
these dietary changes and how do you believe they impacted
your symptoms and overall health.
Speaker 3 (14:51):
So it was also because of YouTube, because my aunt
sent me a video of a doctor just like talking
about how diet affected their diagnosis with MS. And then
I just started doing my own research. I just tried
a bunch of different diets. First, I tried like an
anti inflammatory diet, which I just had to like memorize
things that I could eat and couldn't eat. So that
was that was difficult. If I was going over to
(15:13):
someone's house, I couldn't tell them. I was like, I mean,
here's a list of things, but that's hard.
Speaker 2 (15:18):
Yeah, right.
Speaker 3 (15:19):
And then I was like, Okay, let's try to find
something more like black and white, so I tried paleo.
I didn't feel like really any different with either of
those diets. And then one day I remember I was
sitting on my couch spring break. You know most people
would go off to like Florida or something in my
house on my laptop watching YouTube videos.
Speaker 1 (15:36):
So that's your version of a party.
Speaker 3 (15:38):
Yeah, yeah, Because at that time I was just like
researching everything I could. At that point, I was even
researching the actual steroid that I was on, like what
causes the symptoms? And then I was like, Okay, if
I can figure out what causes the symptoms, I can
do the opposite of that and not have those symptoms,
which actually worked.
Speaker 1 (15:54):
Oh like reverse engineering it.
Speaker 2 (15:55):
Yeah kind of.
Speaker 3 (15:56):
I was like, how does the medicine work, Like if
it makes you have insomnia, I'm gonna do everything I
have to have like really good sleep hygiene, to like
have like a bed time routine, so like I can
stack the cards in my favor as far as being
able to not have insomnia or like various other things
like what can I do to mitigate this thing? And
I had some side effects, but it wasn't nearly as
bad as other people's, I know, because I was like
more preemptive with it. And over spring break, though, I
(16:19):
remember I was watching this video of a YouTuber who
was talking about her experience with eating like a raw
vegan diet. The first time I watched the video, I
was like, there's no way you're getting enough calories eating
just fruits and vegetables. There's definitely no way you're getting
enough protein. And I was like, and this is crazy,
And then I remember X out of the video, And
then for some reason, the next day, I watched that
same video again, but I had a way different mindset.
(16:40):
I was like, this actually seems cool and fun and
it seems like it could be like a really healthy
way to eat. And the other thing that I really
liked about it was it was very black and white,
so I could like tell someone like it's raw fruits
and vegetables, nuts and seeds and that's it.
Speaker 2 (16:54):
Nothing else. Yeah, So I really like that.
Speaker 3 (16:55):
And then I told my mom that I was gonna
just be eating fruits and vegetables, and she had like
the same questions like how are you gonna get enough
Calories're gonna enough protein? And then I told her that
I was and she was like, Okay, well, you know,
if you want to try it.
Speaker 2 (17:06):
Go ahead and try it. So I did.
Speaker 3 (17:08):
And then just anecdotally, I felt like I was just
recovering faster. Like I had no way to prove it,
but I was like, I feel like I'm just able
to just improve a little bit faster every day, and
that could have been just a placebofaction, I don't know.
I also think that that's why my medication was like
very effective for me as well. I was very excited
(17:28):
to get on medication because I was like, this will
solve my problem. I see, this is a step in
the right direction. This is something that I can proactively
do to better myself, just to get healthier again.
Speaker 1 (17:37):
It's like soothing that uncertainty that you mentioned.
Speaker 2 (17:40):
Exactly, because for me.
Speaker 3 (17:41):
It was just like, I just need to know what
it is and then I need to figure out a
plan to overcome this. Once I solve the problem, I'll
be happier.
Speaker 2 (17:47):
You know.
Speaker 1 (17:48):
Look, this is just my two cents, but it seems like,
you know the fact that you studied exercise physiology, Like
in my experience, that's a certain type of person who
is very much, as you described, like solutions oriented science.
Speaker 3 (18:00):
Yeah, oh yeah, super solution oriented. I was like, I
just need a solution to my problem and then I'll
just move forward with the rest of my life.
Speaker 2 (18:06):
You know, problem solved.
Speaker 1 (18:08):
Your experience with the dietary changes, as you mentioned, were
really helpful to you, But obviously everyone is different. What
if your doctors said about your dietary choices and how
they relate to your CIDP.
Speaker 2 (18:21):
Yeah.
Speaker 3 (18:21):
So when I went back to school, I got a
new neurologist because my school is like ninety minutes away.
So I was told that I could do the IVG
every other week, and it was like once a month
or so, my neurologist would meet with me again say hey,
how are your symptoms. I was like, everything's good, everything
was going in the right direction. And then at that point,
I had the choice to either extend the duration one
(18:42):
more week between my IVG or I could go maybe
like ten or twenty milligrams less on my steroids. But
there was only one thing that we could change each time,
because you know, if you change too many things at once,
something goes wrong.
Speaker 2 (18:55):
You don't know which one was the problem.
Speaker 3 (18:57):
The last time I met with her, though, she's like,
I roughly know what you're doing, Like you're eating raw
fruits and vegetables.
Speaker 1 (19:04):
While it's powerful to hear how dietary changes may have
improved how Craig was feeling, it's important to note that
you should always consult with your doctors about what lifestyle
changes might be best for you.
Speaker 2 (19:16):
She's like, I don't get it, but it's working.
Speaker 3 (19:19):
Because at this point, and this was in August of
twenty fourteen, she was like, whatever you doing, just keep
doing it. She was like, I never expected you to
make the recovery that you did as quickly as you did.
Speaker 1 (19:33):
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
(19:53):
or chronic inflammatory demilinating polyneuropathy community. Shining through CIDP is
a new website that aims to empower those living with
this rare condition in their families to create the space
needed for a more joyful life. Shining through CIDP features
real stories, tips on emotional self care, and new ideas
(20:13):
to help navigate the CIDP journey. For more information, visit
Shining THROUGHCIDP dot com. And now back to untold stories.
So where you are now is you are running and
operating your family's candy business, Hercules Candy Company. Tell us
(20:37):
a little about the business and how you became more involved.
Speaker 3 (20:41):
So I started my YouTube channel just about my autoimmune
disease back in I want to say, two thousand and
thirteen or something like that. I started because when I
first got diagnosed, I went home, I went on YouTube.
That was like the first thing I did, and there
was almost no videos about it. And I was like, Okay,
when I get better, I'm going to make an entire channel,
okay to this so that then when somebody else gets diagnosed,
(21:02):
they don't feel so alone. So I started the YouTube channel,
and then over time I was like, oh, okay, I
just like making videos. Yeah, And I was like, okay,
I I've done enough videos about CIDP, Like there's only
so many videos that you can make about an autoimmune disease.
And then I was like okay, like I'll maybe make
some like vegan videos, like recipee videos or something. And
my videos were like the same as every other vegan.
So I was like, okay, I gotta find something that
(21:24):
differentiates me from the other vegan so that then like
I can stand out, Like why would someone watch my
videos if they're the same as everyone else's Okay. So
I was like, okay, Well, my parents have a candy shop.
They make candy in the basement of my house. They
sell it on the first floor of the house and
we live on the second floor.
Speaker 2 (21:39):
That's awesome.
Speaker 1 (21:39):
Yeah.
Speaker 3 (21:40):
Yeah, Hercules candy has been a family business for over
one hundred years. So I was like, okay, nobody else
has like a huge marble slab in their basement and
like a giant copper kettle and two parents who know
how to make candy. So I was like, I'll just
make a ribbon candy recipe video because it's still a
recipe video and it's vegan. It's just sugar not healthy.
It's like sugar corns or water. And so I shot
(22:00):
one video and it kind of sat there for a
little bit, and then eventually it like kind of took off,
like people really liked it.
Speaker 2 (22:05):
Yeah.
Speaker 3 (22:05):
They also really liked that we were just like joking
around being sarcastic the whole time, which to me, I
didn't realize that my family was sarcastic until everyone started
commenting the were sarcastic, because I was like, I just
thought that's how people communicated.
Speaker 2 (22:16):
Now, families talk.
Speaker 3 (22:18):
Yeah, So the channel started doing better, and then I
was like, Okay, I'll just start a whole other channel
of just how my parents made their candy. And then
they started getting more sales from the videos. And then
at this point, I was working at a grocery store
and I was only working part time, but then there
was two people that we who needed time off for
various things. They asked if I could cover the shift,
(22:39):
So basically I was working full time that week. So
I made more money at the grocery store, but I
made less money on YouTube because I couldn't spend as
much time on it. So I was like, Okay, I'm
losing money by having a job right now, so I
got to make a choice.
Speaker 2 (22:51):
Yeah.
Speaker 3 (22:51):
So then I quit working at the grocery store, and
then I just went full time on YouTube. And then
my parents eventually were getting so the orders that they
were actually able to move to a proper storefront, which
my dad wanted for the past forty years.
Speaker 1 (23:04):
Oh my gosh.
Speaker 2 (23:05):
Yeah.
Speaker 3 (23:05):
So my mom always jokes that, like me getting sick
was like the best thing that ever happened to our family,
because that sarcasm.
Speaker 2 (23:12):
Yeah, I agree with it. Though.
Speaker 3 (23:14):
It's like I wouldn't have known that I liked making videos.
I wouldn't have ever thought to even like advertise for them,
because growing up, candy making was just like so normal
to me that I didn't think that anybody else would
find it interesting. Like I never even thought to post
videos on YouTube. I didn't think anyone would like given
my parents were like, I don't think anyone's going to
care about this, And then we found out there's so
many people who love watching candy making videos, which shocked us.
Speaker 2 (23:36):
But we were like, hey, let's do it. We got it.
Speaker 1 (23:39):
Here we go.
Speaker 3 (23:40):
Yeah, exactly, and they're actually able to save up for
retirement now, which before they were like, We're just going
to work until we die.
Speaker 1 (23:45):
Craig, that's fantastic. Look at you saving your family's you know,
future like that. You've had such a unique journey with CIDP,
and it sounds like sharing your story and your family's
story on YouTube really has, in additions, sort of fostered
a sense of gratitude. What does gratitude mean to you?
Speaker 3 (24:04):
It makes everything else in life just seem easier any
struggle that I go through, like at least my leg's work.
You know, when you've been through something like really tough,
you have the perspective of.
Speaker 2 (24:12):
Like, things could be a lot worse.
Speaker 3 (24:13):
Even when I was paralyzed, at one point when I
was like slowly like relearning how to walk, I was
walking around like with crutches, and at one point I
sprained my ankle, and then I was like, Okay, well,
at least I'm not basically paralyzed with a sprained ankle.
And then, like before I was super paralyzed and I
was just bedridden for that week for the spinal headache.
I was just thankful that I could sit up and
(24:35):
I'm just grateful that I live in a country where,
like I have choices every day.
Speaker 1 (24:39):
Yeah, so what would you say you're grateful for today
and at this moment in your life.
Speaker 3 (24:45):
I'm grateful for the overwhelming, just like threatening amount of
optimism that my mom gave me. Both me and my
mom are like dangerously optimistic. What's the danger there? We
that's my family's joke. Like we'll say something like if
we're talking about food, we'll say it's like disgustingly good,
or we'll say, you know, like you use adjectives that
(25:06):
don't usually make sense, but then it just makes it funnier.
So yeah, it looks just to say we're like threateningly optimistic.
So I love that, And I also love that. I
always saw the ADP as like the opportunity to show
myself like the man that I am, because you don't
really know the type of person that you are until
you go through hardship, like and if you haven't gone
through hardship, like, you don't know how you would deal
(25:27):
with it. And I just saw it as like an opportunity.
Speaker 1 (25:30):
I mean, it's, like you mentioned before, you're kind of
at a crossroads right when this condition first came upon
you and you were like, which way am I going
to go?
Speaker 3 (25:37):
Yeah, Which is not to say that like I didn't
ever have any like sad thoughts or moments or something
like that, but the overwhelming emotions were definitely like I
can get through this.
Speaker 2 (25:46):
Like even when I.
Speaker 3 (25:47):
If I wasn't feeling the best, I would definitely put
on like a strong front for my parents because I
was like, I know that they're going through a hard time,
just like feeling helpless that their son is slowly becoming paralyzed.
Like the least I could do is just act like
everything's like fine all the time, which most of the
time it was, but sometimes I had to act a
little fae you make it, yeah, yeah, because I was like,
I know, I'm being a financial burden right now, so
(26:08):
at least that could be not an emotional burden, you know.
Speaker 1 (26:11):
At least give him some laughs.
Speaker 2 (26:13):
Yeah.
Speaker 1 (26:14):
How do you think gratitude has changed the way that
you interact with your followers on YouTube.
Speaker 3 (26:22):
I'm always just grateful that we have people watching the
videos so that I have a job. I'm always grateful
that we have people who want to buy the candy
for my parents so that they can continue to have
a job. So I'm always very grateful for our followers,
like commenting stuff, asking questions, or like we get to
meet people in person. A lot of times people will
come from like really far away just to see the
(26:43):
candy shop.
Speaker 1 (26:43):
Are you serious?
Speaker 2 (26:44):
Oh?
Speaker 3 (26:44):
Yeah, Like we had some guy who he came from
Saudi Arabia to go to New York City for a
business trip, and then he rented a car from New
York City and drove like four and a half hours
up to Syracuse, bought some candy, and then just.
Speaker 2 (26:57):
Drove right back down to New York City. That's it.
Speaker 3 (26:59):
Or there's other people who like came from Texas and
you know they're doing like a road trip. Like a
lot of people just add us to the road trip.
Speaker 1 (27:05):
That's awesome out of curiosity. Are you able to eat
the candy that your shop makes with your diet?
Speaker 3 (27:11):
Yeah, so we have a vegan line of chocolate. I
generally try to eat pretty healthy. I don't eat raw
vegan anymore, but I do definitely dabble in some vegan
junk food. And at first I was like not sure
if it would affect my out immune disease, And so far,
so good. I'm still able to like train, like really well,
Like I go to the gym like multiple.
Speaker 2 (27:30):
Days a week.
Speaker 3 (27:31):
I did a trath It's just a sprint trathl on.
It was a couple of years ago. Whenever I say trassline,
people think like iron Man. But I have no ambitions
of just like spending that much time training. I just
have and like, all the power to the people who do. Yeah,
but I just have other hobbies that just like take
up time. Maybe some day when I'm retired.
Speaker 1 (27:46):
I was gonna say, in the meantime, those YouTube videos
aren't going to make themselves, you know. So, Craig, with
your health improving and your YouTube channel thriving, what are
your plans or goals for the future. How do you
see your platform evolving?
Speaker 3 (28:00):
Honestly, just like keep doing what I'm doing and trying
to find new ways to make interesting, engaging content because
the platforms and the algorithms are always changing. It always
keeps me on my toes because things change so fast.
But yeah, just continuing posting on like YouTube, we do, YouTube, Facebook, Instagram, TikTok.
So yeah, we got We're tosing a lot of different things.
Speaker 1 (28:21):
Excellent, And do people still reach out to you about
your CIDP journey.
Speaker 3 (28:25):
Yeah, it's mostly on Instagram. Instagram is definitely the best
way because I'll go in there usually at least once
a day, and usually if someone has like a couple questions,
I'll just answer them. If someone has a lot of questions,
then I'll say, hey, look, let's schedule a video call.
Speaker 2 (28:37):
I prefer to do video calls. It's just faster for
both of us.
Speaker 1 (28:40):
Excellent. And I see also too, that you are a photographer. Yeah, yeah,
I saw some of your photos. They're really beautiful.
Speaker 2 (28:47):
Oh thank you.
Speaker 1 (28:48):
They really are, like really impressive. Where do you take those? So?
Speaker 3 (28:52):
I live in Syracuse, New York, so a couple of
them are like pretty close by, like Syracuse or Ethhica.
Speaker 2 (28:57):
A lot of them are actually.
Speaker 3 (28:58):
In the Adirondecks and the Aronic Mountains, and I just
go up there and do astra photography because it's a
really beautiful area. Because I like to do like landscape
astrap photography, and I have to get away from all
the light pollution in cities, otherwise I can't really take
photos of the stars because I'll get drown out and
all the light pollution.
Speaker 1 (29:13):
So that's awesome. So, Craig, your attitude is so amazing,
being dangerously optimistic as you say, and so grateful throughout
your journey. What does being able to share your story
with others mean to you?
Speaker 3 (29:26):
That means a lot to me, just because I wish
that I got a lot of help at that time.
So if I can be there to help someone the
way that I wanted to be helped, that's all I
want to do.
Speaker 1 (29:34):
Yeah. And also to have them, like you said, benefit
from what your trials and errors and the things that
you have eventually learned.
Speaker 3 (29:41):
Yeah, if I can shortcut someone's learning, then that'd be great,
or shortcut the recovery, that'd be great.
Speaker 1 (29:46):
And how do you think that gratitude has been an
important part of your perspective on CIDP and also helping
others by sharing your story.
Speaker 2 (29:55):
Yeah.
Speaker 3 (29:55):
If I didn't have gratitude, I think I wouldn't have
been able to be so optimistic.
Speaker 2 (29:59):
I think it would be.
Speaker 3 (30:00):
Hard to share that sort of positive mindset with others
as well. So I think it helped with my recovery,
and I think it's helped with other people who reach
out to me being able to help them.
Speaker 1 (30:11):
Yeah, So to kind of wrap that up in a
BOWT What piece of advice would you share for people
who are newly diagnosed with CIDP or an autoimmune condition.
Speaker 2 (30:20):
I would definitely say educate yourself.
Speaker 3 (30:23):
I would say definitely make sure that you have a
good medical staff that you're working with, one who has
not understaffed, one who is definitely going to listen to you.
If you're like not seeing the results after a long
period of time, just like, hey, what else can we do?
And then also changing your diet and lifestyle, whether you know,
if you decide to be vegan, that's great. If not,
whatever works for you, but just try something, being proactive,
(30:47):
being positive, because I really do think that believing that
something will work will work.
Speaker 1 (30:51):
Awesome, Craig, it's been such a pleasure to talk to
you today.
Speaker 2 (30:55):
Yeah, it's been a pleasure to be here.
Speaker 1 (31:00):
Tike's incredible strength and determination really show us the power
of gratitude and how it's all about not giving up
even when things get really tough. Thanks for listening to
today's episode of Untold Stories. If you enjoyed hearing about
Craig's experience, make sure to join us every other week
for more. Don't forget to also please rate and review
wherever you listen to podcasts Untold Stories Life with a
(31:24):
Severe Autoimmune Condition is produced by Ruby's Studio from iHeartMedia
in partnership with Argenics and hosted by me Martine Hackett.
Our executive producer is Malli Sosha. Our EP of Post
production 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's Studio in partnership with Urgenics, 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 autoimune conditions like Mayasthenia 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 l liked 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. In today's episode, we're zeroing in on the
(01:14):
transformative power of gratitude and its powerful influence for those
managing CIDP and other autoimmune conditions. Living with CIDP may
come with its fair share of daily hurdles, including complex
treatment protocols and significant lifestyle adjustments. Today, we'll explore how
embracing gratitude can do more than just help you cope.
(01:36):
It can also help reframe challenges into new prospects that
enrich life, instilling a sense of fulfillment and hope. Today
we're joined by Craig, a true example of how gratitude
can reshape one's experiences. Initially misdiagnosed with gion Bray syndrome
during college, Craig endured escalating fatigue and symptoms that halted
(01:58):
his running career and resulted in his need for a
keene and eventually a wheelchair. But armed with determination and
a hunger for answers, he used his own research to
work with his doctor to find the correct diagnosis of CIDP.
Now fully adjusted to life with his condition, he uses
his YouTube channel at No Egg Craig to share his
(02:18):
story with others who are searching for support. As we
delve into Craig's story, we'll see how his gratitude has
not only helped him navigate his health challenges, but has
also turned them into a way to connect with his
larger community.
Speaker 2 (02:38):
Hi Craig, Hi Martine.
Speaker 1 (02:40):
So Craig, Let's start with the beginning. You were an
athlete studying physiology when you first started to experience symptoms.
Tell us about it. Where were you, what were you doing,
and do you remember any specific moments during the onset
of symptoms.
Speaker 3 (02:56):
I actually remember a lot of specific moments because the
time I was getting ready for indoor track in college,
and our coaches had us keep like a running journal,
so I know everything to the date when it happened.
So November one, twenty eleven, that's when I just got
like a random cold. And then after a couple of days,
I was like, okay, like I feel normal again. But
(03:17):
it seemed like fifteen minutes into every run or every practice,
my body would start to just feel.
Speaker 2 (03:23):
Very like weak.
Speaker 3 (03:25):
I couldn't run as fast, and I couldn't figure out why.
It just seemed like every time that like my internal
temperature went up, I just felt really really weak and
we couldn't fgure out what it was. Over time, it
steadily got worse and worse, and then anytime there was
external heat as well, like when I would put my
hands in the dryer to get my clothes out, my
hands would go kind of like numb and tingly. So
at that point, in the back of my mind, I
(03:47):
was kind of like, I feel like this is something
neurological because it's not only affected my muscles but also
like how I'm feeling things in the world. But at
the same time, I was like, I'm nineteen, Like nothing
neurological happens in nineteen year olds, you know, little did
I know. So it got to the point where, like
when I was finishing my runs, it was hard for
me to stop.
Speaker 2 (04:06):
My body would just keep going with like the momentum.
Speaker 3 (04:09):
I remember one time my sister was saying that I
was being dramatic, and I was like, no, I literally
am having a hard time.
Speaker 2 (04:15):
Stopping from running.
Speaker 1 (04:17):
My gosh.
Speaker 3 (04:18):
Eventually, I got like tested for like a bunch of
stuff that like runners usually would get tested for BE
twelve deficiency mono is relatively common as far as like
really affecting your athletic performance, iron deficiency. Everything came back negative,
which was great that it was healthy, but also frustrating
because I was like.
Speaker 2 (04:34):
I know, it's not my head there's something wrong.
Speaker 3 (04:36):
Yeah, yeah, exactly, Like I was looking forward to a
diagnosis because at least I wanted to know what I'm
up against and then you can fight it whatever it is.
I even got tested for MS that came back negative,
and eventually I was referred to a neurologist and then
he diagnosed me with Giambray syndrome and he said that
(04:57):
it was the most mild form he had ever seen,
and I was like, I would love to hold that title.
That's awesome. Yeah, so I was excited about that. I
was like, finally I got a diagnosis. And he was like,
you know what, since it's so mild, we're actually not
going to have to do any sort of medication. It
should just reverse itself. So I was like, that's even
better news. And then a week before school started. This
is in early twenty twelve, I got a spinal tap
(05:19):
for the official diagnosis because that actually came back positive.
Speaker 1 (05:24):
For people with GBS and CIDP, spinal fluid usually has
more protein than normal, but it doesn't show changes in
the white blood cells or pressure, so a spinal tap
is a good way for doctors to identify these conditions.
Speaker 3 (05:40):
So I finally got a diagnosis because my cerebral spinal
fluid protein was like four times what it should have
been or something like that. So he was like, yes,
this is a clear diagnosis. So I was like, Okay, cool,
we finally know what it is. And after I got
these spinal tap I think my spinal column just didn't
completely close up because I had spinal headaches for about
a week. And spinal headaches are like really really excruciating headaches,
(06:03):
But it's only when your head is above your spine.
So if you're laying down horizontal, you don't feel any pain.
If your head is below your spine for some reason,
then you don't feel any pain. But it's the second
that your head comes up above your spine that it
starts to hurt really bad.
Speaker 2 (06:17):
So I was given like hydro codone.
Speaker 1 (06:20):
According to mrk Manual, low pressure headaches or spinal headaches
occur when the fluid that cushions the brain is removed
during a spinal tap, or it leaks out because of
a tear or as cyst in the tissue layers around
the spinal cord. With less of this protective fluid, the
pressure around the brain drops, causing the headaches that Craig
is referring to.
Speaker 3 (06:44):
That was the only way that I was able to
actually shower yahn hydros and they said caffeine helped, And
I'm not a coffee drinker, so I was just drinking
a bunch of like mountain dew actually at the time.
Speaker 1 (06:53):
But meanwhile, like school's starting and it's like, what are
you going to do?
Speaker 3 (06:57):
I was like, Okay, well, if I'm can't go to
the first week of school, which is like a really
important week. And then also at the time, we didn't
completely understand Ganberra syndrome because I've heard of people who
just wake up paralyzed, and I was like, what if
that happens while I'm sleeping and I wake up like,
I'd rather have my friends and family be there, like
so the for a couple of months, when I would
wake up in the morning, the first thing I would
(07:17):
do is just like move my arms and legs just
to make sure I wasn't paralyzed. And I was like, Okay,
at least I'm not completely paralyzed.
Speaker 2 (07:22):
Today.
Speaker 1 (07:23):
That's not a good way to you know, live your life.
Speaker 3 (07:26):
No, no, no, yeah, it's you know, not as fun
as it sounds. So I was like, Okay, I'll just
take that semester off of school, and I was like,
you know what, I want to make the best of
this time, though, I'm not just going to stay home
play video games or something, because initially I went to
school for exercise physiology and kinesiology with the idea of
being an NCAA track and cross country coach. So I
volunteered at my local high school to be a track coach.
Speaker 2 (07:49):
The season went great.
Speaker 3 (07:50):
Actually, I had a lot of fun and definitely gained
a lot of experience. But as a season went on,
I started to get like worse and worse, and I
was kind of just in denial like the whole because
I was like, oh, no, you know, I just did
too much physical therapy yesterday, or it was like it's
too hot today or it's too cold today, which kind
of happened in upstate New York.
Speaker 2 (08:08):
Yeah, it could be too hot one day, too cold
to night.
Speaker 1 (08:11):
Got it, so always a reason to you know, be
able to explain why you're feeling what you're feeling.
Speaker 3 (08:16):
Yeah, because I didn't want it to be true that
I was actually still getting worse.
Speaker 1 (08:20):
Because you were told like it should be resolving itself,
like this should be clearing up exactly.
Speaker 3 (08:25):
So eventually I got to a point where it was
like too much to deny. So I was just going
on Google and YouTube and stuff, and eventually I found
something called CIDP and I started reading about that, and like,
the main difference between CIP and GBS, to my understanding,
is that CIDP happens over a much longer time frame,
where is GBS is much shorter. And that matched exactly
with what I was going through because this story so far,
(08:47):
it started in November, and by this point it was
around like late June, I think by the time that
I reached out to my neurologist and I just sent
him an email said hey, I think I don't have GBS.
Speaker 2 (08:58):
I actually think I have CADP. Like I'm still getting worse.
Speaker 1 (09:00):
Wow.
Speaker 3 (09:00):
And then he got me in basically like the next
day and then he confirmed my diagnosis.
Speaker 2 (09:04):
You're like, yeah, you have CIP and not GBS.
Speaker 1 (09:06):
Oh gosh, yeah.
Speaker 3 (09:07):
Well, I mean at the same time, when you hear
huff prints, you think horses, not zebras, and GBS is
a bit more common. And I could tell he felt
terrible because I know personally they're just understaffed over there
at that neurology place. So like, I really felt for
him because I know that I knew that he was
doing the best he could.
Speaker 2 (09:21):
And he just made an honest mistake.
Speaker 3 (09:22):
And I was just like, hey, you know, is there
anything else that we can do, Like can we try
plasma foresis?
Speaker 2 (09:28):
And he was just saying, it's much more invasive.
Speaker 1 (09:31):
The Cochrane Database of Systematic Reviews explains that plasma phoresis
or plasma exchange is a treatment where your blood is
drawn and sent through a machine that filters out plasma,
or the liquid part of your blood, and replaces it
with a substitute. Your red blood cells are kept and
return to your body. This helps clear out potentially harmful substances,
(09:51):
including the removal of harmful antibodies.
Speaker 3 (09:56):
But it was tough because I was like, I'm still
getting worse, and like the worst it gets, the less
likely you are to make like a full recovery, which
is what I was thinking of. So he was like, Okay,
I'll put you on some steroids as well as the
IVG and we'll see if that helps. I don't know
if it was the steroids or if it was just
the timing. But things started to turn around, Like maybe
a week or two after that, I started being able
(10:18):
to be better in my sit to stand transitions. Still
not great. I still need like a lot of assistance.
Like I couldn't stand up on my own. At this point,
I'd lost like probably thirty pounds of muscle or so. Wow.
Speaker 2 (10:28):
Yeah, I was very, very skinny at the time.
Speaker 1 (10:31):
I mean, Craig, as we know, the emotional journey is
obviously just as powerful as the physical one, and so
can you recall how you were feeling in those early days?
Speaker 3 (10:40):
It was actually the hardest in the beginning because I
just didn't know what was going on for me. Once
I know what's going on, it's a lot.
Speaker 1 (10:45):
Easier because what was that feeling like, is it just
sort of like, you know, just your mind was racing
with all the different possibilities.
Speaker 3 (10:52):
Not necessarily like racing, but just like uncertain about my future.
Speaker 1 (10:57):
Because you're nineteen at this time, right and you had, like,
you know, it sounds like you had your future pretty planned.
Speaker 2 (11:04):
Yeah, So it definitely threw like a wrench in the works.
Speaker 3 (11:07):
And as I just kept getting worse, I was kind
of always just subconsciously taught like my parents never told
me this, but my mom, I noticed, would always kind
of hope for the best and plan for the worst.
So I started kind of preemptively learning more like computer
based things. I was like, look, maybe I can get
into graphic design, because like, no one's gonna want to
hire like a paralyzed track or cross country coach, you know,
(11:28):
so there when I hire someone who can like show
them how to do the drills and stuff. So I
was kind of like hedging my bets because I had
no idea what my future held once I got the diagnosis.
Speaker 2 (11:37):
And even still when I was.
Speaker 3 (11:39):
Like very paralyzed, I was always thinking like, you know,
at least I had nineteen years of using my legs.
Some people never got to use them wow, or as
also thinking like I have a roof over my head,
I have friends and family who love me. I know
where my next meal is coming from. I live in
a first world country where I have access to medication
because there's other people who like there is no light
at the end of the tunnel.
Speaker 1 (12:00):
Craig's story really underscores the power of gratitude. Even during
his toughest times, he focused on what he still had
years of mobility, a supportive network, and the basics like
shelter and food. This perspective not only helped him cope,
but also brought a sense of hope and resilience, reminding
us that gratitude can be a lifeline even in the
(12:20):
most challenging circumstances. And so you're saying that you had
that sense of uncertainty, especially in that time period before
you had that final diagnosis. Did you feel that uncertainty
with your support system.
Speaker 3 (12:35):
No, My family was very supportive and helpful, and we're
a very sarcastic, jokey family. My friends are too, so
we would always make jokes about like I'm just not
getting up from the couches, I'm being lazy, stuff like that.
But then my friend would always he worked at a
movie theater at the time, so he would always take
me and like you know, push me in my wheelchair
to go like see some movies and stuff for free.
Speaker 2 (12:56):
So that was nice. I still had friends to hang out.
Speaker 3 (12:58):
With or like I went to my friend's pool because
I could actually sort of stand up and like move
around a little bit in the pool.
Speaker 2 (13:05):
Because you weigh like, you know, ten percent of what
your normal body weight, is sure. Yeah, so that was nice.
Speaker 1 (13:10):
So it sounds like people really kind of like plugged
into what it is that you needed at that time.
Speaker 2 (13:15):
Yeah. Like I just wanted to like stay positive the
whole time too.
Speaker 3 (13:18):
Because people who knew me before and would see me
like with crutches, BECAUSEY knew that I was like a runner,
they would see me like what happened? I'd be my
parachute didn't open, or I would just be like you
should have seen the other guy, and then eventually would
slip in like I've got an autoimmune disease and like
now I'm like becoming paralyzed. And then they would be like, well,
I don't know which one's true.
Speaker 1 (13:36):
I was like one of them, two truths in a lie.
Speaker 2 (13:40):
Yeah, exactly. Yeah.
Speaker 3 (13:41):
I was just like, you know what, this is my life.
There's nothing that I can do right now. If I
can change something, then I will. If I can't change it,
then I'm going to make the best of it. You know,
I had the opportunity to make those jokes. I didn't
have that opportunity before. I know, it's like really simple.
Speaker 1 (13:55):
It didn't present itself until then.
Speaker 3 (13:57):
Yeah, you know, pros and cons. Obviously I would rather
have different pars and kinds of being able to use
my legs. But I was like, Hey, this is the reality,
this is what I'm dealing with. And also I think
we all know that, like in a couple decades, like
we're all going to have a story to tell, Like
I could tell the story about how I got depressed
and I didn't do anything, or I could have a
(14:18):
much better story of like how I was like really
happy and positive the whole time, even when I was
going through like the hardest period of my life.
Speaker 2 (14:24):
You know.
Speaker 1 (14:25):
Yeah, So it sounds like you're super aware even then
of like the options you had in terms of how
you were going to deal with this condition. So can
you talk about some of those next phases were in
your CIDP because you experimented with various diets, including paleo
gluten free raw veganism. So what prompted you to explore
(14:46):
these dietary changes and how do you believe they impacted
your symptoms and overall health.
Speaker 3 (14:51):
So it was also because of YouTube, because my aunt
sent me a video of a doctor just like talking
about how diet affected their diagnosis with MS. And then
I just started doing my own research. I just tried
a bunch of different diets. First, I tried like an
anti inflammatory diet, which I just had to like memorize
things that I could eat and couldn't eat. So that
was that was difficult. If I was going over to
(15:13):
someone's house, I couldn't tell them. I was like, I mean,
here's a list of things, but that's hard.
Speaker 2 (15:18):
Yeah, right.
Speaker 3 (15:19):
And then I was like, Okay, let's try to find
something more like black and white, so I tried paleo.
I didn't feel like really any different with either of
those diets. And then one day I remember I was
sitting on my couch spring break. You know most people
would go off to like Florida or something in my
house on my laptop watching YouTube videos.
Speaker 1 (15:36):
So that's your version of a party.
Speaker 3 (15:38):
Yeah, yeah, Because at that time I was just like
researching everything I could. At that point, I was even
researching the actual steroid that I was on, like what
causes the symptoms? And then I was like, Okay, if
I can figure out what causes the symptoms, I can
do the opposite of that and not have those symptoms,
which actually worked.
Speaker 1 (15:54):
Oh like reverse engineering it.
Speaker 2 (15:55):
Yeah kind of.
Speaker 3 (15:56):
I was like, how does the medicine work, Like if
it makes you have insomnia, I'm gonna do everything I
have to have like really good sleep hygiene, to like
have like a bed time routine, so like I can
stack the cards in my favor as far as being
able to not have insomnia or like various other things
like what can I do to mitigate this thing? And
I had some side effects, but it wasn't nearly as
bad as other people's, I know, because I was like
more preemptive with it. And over spring break, though, I
(16:19):
remember I was watching this video of a YouTuber who
was talking about her experience with eating like a raw
vegan diet. The first time I watched the video, I
was like, there's no way you're getting enough calories eating
just fruits and vegetables. There's definitely no way you're getting
enough protein. And I was like, and this is crazy,
And then I remember X out of the video, And
then for some reason, the next day, I watched that
same video again, but I had a way different mindset.
(16:40):
I was like, this actually seems cool and fun and
it seems like it could be like a really healthy
way to eat. And the other thing that I really
liked about it was it was very black and white,
so I could like tell someone like it's raw fruits
and vegetables, nuts and seeds and that's it.
Speaker 2 (16:54):
Nothing else. Yeah, So I really like that.
Speaker 3 (16:55):
And then I told my mom that I was gonna
just be eating fruits and vegetables, and she had like
the same questions like how are you gonna get enough
Calories're gonna enough protein? And then I told her that
I was and she was like, Okay, well, you know,
if you want to try it.
Speaker 2 (17:06):
Go ahead and try it. So I did.
Speaker 3 (17:08):
And then just anecdotally, I felt like I was just
recovering faster. Like I had no way to prove it,
but I was like, I feel like I'm just able
to just improve a little bit faster every day, and
that could have been just a placebofaction, I don't know.
I also think that that's why my medication was like
very effective for me as well. I was very excited
(17:28):
to get on medication because I was like, this will
solve my problem. I see, this is a step in
the right direction. This is something that I can proactively
do to better myself, just to get healthier again.
Speaker 1 (17:37):
It's like soothing that uncertainty that you mentioned.
Speaker 2 (17:40):
Exactly, because for me.
Speaker 3 (17:41):
It was just like, I just need to know what
it is and then I need to figure out a
plan to overcome this. Once I solve the problem, I'll
be happier.
Speaker 2 (17:47):
You know.
Speaker 1 (17:48):
Look, this is just my two cents, but it seems like,
you know the fact that you studied exercise physiology, Like
in my experience, that's a certain type of person who
is very much, as you described, like solutions oriented science.
Speaker 3 (18:00):
Yeah, oh yeah, super solution oriented. I was like, I
just need a solution to my problem and then I'll
just move forward with the rest of my life.
Speaker 2 (18:06):
You know, problem solved.
Speaker 1 (18:08):
Your experience with the dietary changes, as you mentioned, were
really helpful to you, But obviously everyone is different. What
if your doctors said about your dietary choices and how
they relate to your CIDP.
Speaker 2 (18:21):
Yeah.
Speaker 3 (18:21):
So when I went back to school, I got a
new neurologist because my school is like ninety minutes away.
So I was told that I could do the IVG
every other week, and it was like once a month
or so, my neurologist would meet with me again say hey,
how are your symptoms. I was like, everything's good, everything
was going in the right direction. And then at that point,
I had the choice to either extend the duration one
(18:42):
more week between my IVG or I could go maybe
like ten or twenty milligrams less on my steroids. But
there was only one thing that we could change each time,
because you know, if you change too many things at once,
something goes wrong.
Speaker 2 (18:55):
You don't know which one was the problem.
Speaker 3 (18:57):
The last time I met with her, though, she's like,
I roughly know what you're doing, Like you're eating raw
fruits and vegetables.
Speaker 1 (19:04):
While it's powerful to hear how dietary changes may have
improved how Craig was feeling, it's important to note that
you should always consult with your doctors about what lifestyle
changes might be best for you.
Speaker 2 (19:16):
She's like, I don't get it, but it's working.
Speaker 3 (19:19):
Because at this point, and this was in August of
twenty fourteen, she was like, whatever you doing, just keep
doing it. She was like, I never expected you to
make the recovery that you did as quickly as you did.
Speaker 1 (19:33):
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
(19:53):
or chronic inflammatory demilinating polyneuropathy community. Shining through CIDP is
a new website that aims to empower those living with
this rare condition in their families to create the space
needed for a more joyful life. Shining through CIDP features
real stories, tips on emotional self care, and new ideas
(20:13):
to help navigate the CIDP journey. For more information, visit
Shining THROUGHCIDP dot com. And now back to untold stories.
So where you are now is you are running and
operating your family's candy business, Hercules Candy Company. Tell us
(20:37):
a little about the business and how you became more involved.
Speaker 3 (20:41):
So I started my YouTube channel just about my autoimmune
disease back in I want to say, two thousand and
thirteen or something like that. I started because when I
first got diagnosed, I went home, I went on YouTube.
That was like the first thing I did, and there
was almost no videos about it. And I was like, Okay,
when I get better, I'm going to make an entire channel,
okay to this so that then when somebody else gets diagnosed,
(21:02):
they don't feel so alone. So I started the YouTube channel,
and then over time I was like, oh, okay, I
just like making videos. Yeah, And I was like, okay,
I I've done enough videos about CIDP, Like there's only
so many videos that you can make about an autoimmune disease.
And then I was like okay, like I'll maybe make
some like vegan videos, like recipee videos or something. And
my videos were like the same as every other vegan.
So I was like, okay, I gotta find something that
(21:24):
differentiates me from the other vegan so that then like
I can stand out, Like why would someone watch my
videos if they're the same as everyone else's Okay. So
I was like, okay, Well, my parents have a candy shop.
They make candy in the basement of my house. They
sell it on the first floor of the house and
we live on the second floor.
Speaker 2 (21:39):
That's awesome.
Speaker 1 (21:39):
Yeah.
Speaker 3 (21:40):
Yeah, Hercules candy has been a family business for over
one hundred years. So I was like, okay, nobody else
has like a huge marble slab in their basement and
like a giant copper kettle and two parents who know
how to make candy. So I was like, I'll just
make a ribbon candy recipe video because it's still a
recipe video and it's vegan. It's just sugar not healthy.
It's like sugar corns or water. And so I shot
(22:00):
one video and it kind of sat there for a
little bit, and then eventually it like kind of took off,
like people really liked it.
Speaker 2 (22:05):
Yeah.
Speaker 3 (22:05):
They also really liked that we were just like joking
around being sarcastic the whole time, which to me, I
didn't realize that my family was sarcastic until everyone started
commenting the were sarcastic, because I was like, I just
thought that's how people communicated.
Speaker 2 (22:16):
Now, families talk.
Speaker 3 (22:18):
Yeah, So the channel started doing better, and then I
was like, Okay, I'll just start a whole other channel
of just how my parents made their candy. And then
they started getting more sales from the videos. And then
at this point, I was working at a grocery store
and I was only working part time, but then there
was two people that we who needed time off for
various things. They asked if I could cover the shift,
(22:39):
So basically I was working full time that week. So
I made more money at the grocery store, but I
made less money on YouTube because I couldn't spend as
much time on it. So I was like, Okay, I'm
losing money by having a job right now, so I
got to make a choice.
Speaker 2 (22:51):
Yeah.
Speaker 3 (22:51):
So then I quit working at the grocery store, and
then I just went full time on YouTube. And then
my parents eventually were getting so the orders that they
were actually able to move to a proper storefront, which
my dad wanted for the past forty years.
Speaker 1 (23:04):
Oh my gosh.
Speaker 2 (23:05):
Yeah.
Speaker 3 (23:05):
So my mom always jokes that, like me getting sick
was like the best thing that ever happened to our family,
because that sarcasm.
Speaker 2 (23:12):
Yeah, I agree with it. Though.
Speaker 3 (23:14):
It's like I wouldn't have known that I liked making videos.
I wouldn't have ever thought to even like advertise for them,
because growing up, candy making was just like so normal
to me that I didn't think that anybody else would
find it interesting. Like I never even thought to post
videos on YouTube. I didn't think anyone would like given
my parents were like, I don't think anyone's going to
care about this, And then we found out there's so
many people who love watching candy making videos, which shocked us.
Speaker 2 (23:36):
But we were like, hey, let's do it. We got it.
Speaker 1 (23:39):
Here we go.
Speaker 3 (23:40):
Yeah, exactly, and they're actually able to save up for
retirement now, which before they were like, We're just going
to work until we die.
Speaker 1 (23:45):
Craig, that's fantastic. Look at you saving your family's you know,
future like that. You've had such a unique journey with CIDP,
and it sounds like sharing your story and your family's
story on YouTube really has, in additions, sort of fostered
a sense of gratitude. What does gratitude mean to you?
Speaker 3 (24:04):
It makes everything else in life just seem easier any
struggle that I go through, like at least my leg's work.
You know, when you've been through something like really tough,
you have the perspective of.
Speaker 2 (24:12):
Like, things could be a lot worse.
Speaker 3 (24:13):
Even when I was paralyzed, at one point when I
was like slowly like relearning how to walk, I was
walking around like with crutches, and at one point I
sprained my ankle, and then I was like, Okay, well,
at least I'm not basically paralyzed with a sprained ankle.
And then, like before I was super paralyzed and I
was just bedridden for that week for the spinal headache.
I was just thankful that I could sit up and
(24:35):
I'm just grateful that I live in a country where,
like I have choices every day.
Speaker 1 (24:39):
Yeah, so what would you say you're grateful for today
and at this moment in your life.
Speaker 3 (24:45):
I'm grateful for the overwhelming, just like threatening amount of
optimism that my mom gave me. Both me and my
mom are like dangerously optimistic. What's the danger there? We
that's my family's joke. Like we'll say something like if
we're talking about food, we'll say it's like disgustingly good,
or we'll say, you know, like you use adjectives that
(25:06):
don't usually make sense, but then it just makes it funnier.
So yeah, it looks just to say we're like threateningly optimistic.
So I love that, And I also love that. I
always saw the ADP as like the opportunity to show
myself like the man that I am, because you don't
really know the type of person that you are until
you go through hardship, like and if you haven't gone
through hardship, like, you don't know how you would deal
(25:27):
with it. And I just saw it as like an opportunity.
Speaker 1 (25:30):
I mean, it's, like you mentioned before, you're kind of
at a crossroads right when this condition first came upon
you and you were like, which way am I going
to go?
Speaker 3 (25:37):
Yeah, Which is not to say that like I didn't
ever have any like sad thoughts or moments or something
like that, but the overwhelming emotions were definitely like I
can get through this.
Speaker 2 (25:46):
Like even when I.
Speaker 3 (25:47):
If I wasn't feeling the best, I would definitely put
on like a strong front for my parents because I
was like, I know that they're going through a hard time,
just like feeling helpless that their son is slowly becoming paralyzed.
Like the least I could do is just act like
everything's like fine all the time, which most of the
time it was, but sometimes I had to act a
little fae you make it, yeah, yeah, because I was like,
I know, I'm being a financial burden right now, so
(26:08):
at least that could be not an emotional burden, you know.
Speaker 1 (26:11):
At least give him some laughs.
Speaker 2 (26:13):
Yeah.
Speaker 1 (26:14):
How do you think gratitude has changed the way that
you interact with your followers on YouTube.
Speaker 3 (26:22):
I'm always just grateful that we have people watching the
videos so that I have a job. I'm always grateful
that we have people who want to buy the candy
for my parents so that they can continue to have
a job. So I'm always very grateful for our followers,
like commenting stuff, asking questions, or like we get to
meet people in person. A lot of times people will
come from like really far away just to see the
(26:43):
candy shop.
Speaker 1 (26:43):
Are you serious?
Speaker 2 (26:44):
Oh?
Speaker 3 (26:44):
Yeah, Like we had some guy who he came from
Saudi Arabia to go to New York City for a
business trip, and then he rented a car from New
York City and drove like four and a half hours
up to Syracuse, bought some candy, and then just.
Speaker 2 (26:57):
Drove right back down to New York City. That's it.
Speaker 3 (26:59):
Or there's other people who like came from Texas and
you know they're doing like a road trip. Like a
lot of people just add us to the road trip.
Speaker 1 (27:05):
That's awesome out of curiosity. Are you able to eat
the candy that your shop makes with your diet?
Speaker 3 (27:11):
Yeah, so we have a vegan line of chocolate. I
generally try to eat pretty healthy. I don't eat raw
vegan anymore, but I do definitely dabble in some vegan
junk food. And at first I was like not sure
if it would affect my out immune disease, And so far,
so good. I'm still able to like train, like really well,
Like I go to the gym like multiple.
Speaker 2 (27:30):
Days a week.
Speaker 3 (27:31):
I did a trath It's just a sprint trathl on.
It was a couple of years ago. Whenever I say trassline,
people think like iron Man. But I have no ambitions
of just like spending that much time training. I just
have and like, all the power to the people who do. Yeah,
but I just have other hobbies that just like take
up time. Maybe some day when I'm retired.
Speaker 1 (27:46):
I was gonna say, in the meantime, those YouTube videos
aren't going to make themselves, you know. So, Craig, with
your health improving and your YouTube channel thriving, what are
your plans or goals for the future. How do you
see your platform evolving?
Speaker 3 (28:00):
Honestly, just like keep doing what I'm doing and trying
to find new ways to make interesting, engaging content because
the platforms and the algorithms are always changing. It always
keeps me on my toes because things change so fast.
But yeah, just continuing posting on like YouTube, we do, YouTube, Facebook, Instagram, TikTok.
So yeah, we got We're tosing a lot of different things.
Speaker 1 (28:21):
Excellent, And do people still reach out to you about
your CIDP journey.
Speaker 3 (28:25):
Yeah, it's mostly on Instagram. Instagram is definitely the best
way because I'll go in there usually at least once
a day, and usually if someone has like a couple questions,
I'll just answer them. If someone has a lot of questions,
then I'll say, hey, look, let's schedule a video call.
Speaker 2 (28:37):
I prefer to do video calls. It's just faster for
both of us.
Speaker 1 (28:40):
Excellent. And I see also too, that you are a photographer. Yeah, yeah,
I saw some of your photos. They're really beautiful.
Speaker 2 (28:47):
Oh thank you.
Speaker 1 (28:48):
They really are, like really impressive. Where do you take those? So?
Speaker 3 (28:52):
I live in Syracuse, New York, so a couple of
them are like pretty close by, like Syracuse or Ethhica.
Speaker 2 (28:57):
A lot of them are actually.
Speaker 3 (28:58):
In the Adirondecks and the Aronic Mountains, and I just
go up there and do astra photography because it's a
really beautiful area. Because I like to do like landscape
astrap photography, and I have to get away from all
the light pollution in cities, otherwise I can't really take
photos of the stars because I'll get drown out and
all the light pollution.
Speaker 1 (29:13):
So that's awesome. So, Craig, your attitude is so amazing,
being dangerously optimistic as you say, and so grateful throughout
your journey. What does being able to share your story
with others mean to you?
Speaker 3 (29:26):
That means a lot to me, just because I wish
that I got a lot of help at that time.
So if I can be there to help someone the
way that I wanted to be helped, that's all I
want to do.
Speaker 1 (29:34):
Yeah. And also to have them, like you said, benefit
from what your trials and errors and the things that
you have eventually learned.
Speaker 3 (29:41):
Yeah, if I can shortcut someone's learning, then that'd be great,
or shortcut the recovery, that'd be great.
Speaker 1 (29:46):
And how do you think that gratitude has been an
important part of your perspective on CIDP and also helping
others by sharing your story.
Speaker 2 (29:55):
Yeah.
Speaker 3 (29:55):
If I didn't have gratitude, I think I wouldn't have
been able to be so optimistic.
Speaker 2 (29:59):
I think it would be.
Speaker 3 (30:00):
Hard to share that sort of positive mindset with others
as well. So I think it helped with my recovery,
and I think it's helped with other people who reach
out to me being able to help them.
Speaker 1 (30:11):
Yeah, So to kind of wrap that up in a
BOWT What piece of advice would you share for people
who are newly diagnosed with CIDP or an autoimmune condition.
Speaker 2 (30:20):
I would definitely say educate yourself.
Speaker 3 (30:23):
I would say definitely make sure that you have a
good medical staff that you're working with, one who has
not understaffed, one who is definitely going to listen to you.
If you're like not seeing the results after a long
period of time, just like, hey, what else can we do?
And then also changing your diet and lifestyle, whether you know,
if you decide to be vegan, that's great. If not,
whatever works for you, but just try something, being proactive,
(30:47):
being positive, because I really do think that believing that
something will work will work.
Speaker 1 (30:51):
Awesome, Craig, it's been such a pleasure to talk to
you today.
Speaker 2 (30:55):
Yeah, it's been a pleasure to be here.
Speaker 1 (31:00):
Tike's incredible strength and determination really show us the power
of gratitude and how it's all about not giving up
even when things get really tough. Thanks for listening to
today's episode of Untold Stories. If you enjoyed hearing about
Craig's experience, make sure to join us every other week
for more. Don't forget to also please rate and review
wherever you listen to podcasts Untold Stories Life with a
(31:24):
Severe Autoimmune Condition is produced by Ruby's Studio from iHeartMedia
in partnership with Argenics and hosted by me Martine Hackett.
Our executive producer is Malli Sosha. Our EP of Post
production 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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