February 14, 2024 • 29 mins
Raymond, a retired designer, lived with HIV for 40 years before the onset of his myasthenia gravis (MG) symptoms. As a longtime caregiver for his mother, he was no stranger to the hospital visits and advocacy that is part of seeking quality care. However, after his mother’s passing and the start of COVID-19, he chalked the fatigue and muscle spasms up to stress. It took various specialists to reach proper testing and his official MG diagnosis. Raymond had shifted from caregiver to being his own fierce advocate and was able to gain a new perspective on his relationships and prioritizing self-care. No stranger to managing the effects and stigma of a chronic condition, Raymond maintains even stronger personal connections and boundaries.
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Episode Transcript
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Speaker 1 (00:01):
This podcast is not intended to provide medical advice. Please
talk to your doctor about any medical concerns. Hi, everyone,
and welcome to the season two finale of Untold Stories
Life with a Severe Autoimmune Condition. This podcast is a
production of Ruby Studio in partnership with Argenix, and I'm
(00:22):
your host, Martine Hackett. 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
(00:46):
with an autoimmune condition 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.
As we've come to understand throughout this series, the symptoms
of mayasthenia gravis or MG have a very nuanced effect
(01:09):
on those living with it, from changing family dynamics to
learning to manage symptoms alongside other conditions. Many defining moments
make up life with MG for over forty years. Today's guest, Raymond,
navigated the challenges of living with HIV serving as a
caregiver for his mother before her passing. Raymond was devastated
(01:30):
by the loss of his closest family member. Soon after
she died in twenty twenty, he began developing double vision
and muscle spasms, and despite several negative MG tests, he
remained persistent in the pursuit of a neurologist who could
be a partner in his journey handling grief, social distancing,
and two chronic conditions. He learned to lean into his
(01:52):
chosen family and be mindful of how he spends his energy. Hi, Raymond,
I'm so happy we get to chat today.
Speaker 2 (02:04):
Hello Martin.
Speaker 1 (02:05):
And I know that people can't see you, but with
your nose piercing and incredibly long beard, I have to
admit I think you might be the coolest guest we've
had on the show.
Speaker 2 (02:17):
I'm not sure about that, but hey, yeah.
Speaker 1 (02:20):
Take at the start anyway. Yeah, okay, wonderful. Well let's
get started. And what I would love to know about
first is what was your life like before getting your
MG diagnosis? What were some of your earliest symptoms.
Speaker 2 (02:35):
Well, it's kind of interesting because I really didn't associate
any of my symptoms with anything. Really. I had moved
to care for my mom. I had retired from architecture
and interior design and ride around twenty nineteen or so.
(02:56):
Her health really started to fail and so there was
all the stress of that, and then in May of
twenty twenty she passed away after having a stroke and
all of that. And so when I started experiencing symptoms,
I just associated it with stress, you know, trying to
(03:21):
arrange funeral arrangements in the middle of a pandemic, and
you know, dealing with family who was stressful in their
own way. And so the fatigue, not feeling like doing anything,
which I thought, okay, maybe that's depression. And still, you know,
(03:43):
I've always been the type of person that unless it
was really seriously wrong, I never really sought out help.
I've been relatively healthy for the majority of my life.
I did have a cancer diagnosis years ago, and I
have been HIV positive for forty years, but relatively healthy
(04:06):
with that. So all of those symptoms that are associated
with the initial onset of MG I just attributed distress
and a little bit of depression. It wasn't until I
started having difficulties swallowing and my speech. I was starting
(04:28):
to notice, you know, slurring a little bit, and my
friends were starting to notice it. And you know, the
weirdest types of foods would trigger, like citrus for whatever reason,
I would have trouble swallowing. And it wasn't until I
(04:49):
started having double vision that I thought, okay, something's weird.
And still I thought it was just vision related. So
I went to my optomic matrist and she was like, okay, well,
we can try a whether they call it a Fresnel
lens or a Fresnel lens, you know where they do
(05:10):
a prism and it's just a sticker. And she said,
let's try this, but in the meantime, I want you
to see a neural ophthalmologist. And so a couple of
weeks after I saw her, I went and saw the
neural ophthalmologist and he did the tests for MG. The
(05:33):
blood work. Now I had also had that done by
my neurologist prior, and it came back negative, and you know,
he just never followed up on it. But the neuro ophthalmologist,
when all that came back negative. He said, well, that
doesn't mean, you know, we're not going to stop there,
(05:54):
and so he had the foresight to go ahead and
ordered the SF, the single fiber EMG, and that came
back positive, okay, And so he immediately started me on
what would normally be the standard treatment and I responded
(06:16):
well to that, so that kind of confirmed the diagnosis.
Speaker 1 (06:24):
A single fiber electromiography or EMG testing measures the speed
and strength of electrical signals sent from the nerves to
the muscles. It's proven to be the most sensitive technique
in detecting a neuromuscular transmission defect, and is especially useful
in diagnosing conditions like myasthenia gravis. EMG tests are used
(06:44):
to diagnose neuropathy, which is a form of nerve damage
in which the peripheral nerves that carry signals between the
brain and other parts of the body misfire. As a result,
the symptoms can range from pain and muscle weakness to
complete loss of seas sensation.
Speaker 2 (07:03):
There were problems that had been arising with other things
that were related to my neuropathy, and so we kind
of went back and forth for a while, and then
I just said Okay, I'm finding another neurologist. And so
(07:25):
I found a new neurologist, and it turns out that
he was actually one of the specialists in this area
that deals in myas thenogravs. Oh what it is just
by happenstance? Okay, I think we're very lucky here in
the Kansas City metro that we have the Myastheniogravs Association
(07:48):
is headquartered here. Yes, we've got I don't know, probably
at least three or four neurologists that specialize in myastheniogravs here.
Speaker 1 (08:00):
Wow.
Speaker 2 (08:00):
You know, it was like one of those things where
one thing led to another and everything just kind of
fell into place. And then I started seeing my new
neurologist and he was like, by that time, my symptoms
had gotten so bad that he was like, we need
(08:22):
to start you immediately on IVIG and so my diagnosis
is literally a year old.
Speaker 1 (08:31):
What made your current neurologist different from the others.
Speaker 2 (08:35):
I think one of the first things when I first
found him was the last thing he said to me
before we left after that first appointment was no matter
how long it takes, we're going to figure out what's
going on.
Speaker 1 (08:50):
Wow.
Speaker 2 (08:51):
No other doctor had ever said that to me, and
I thought, Okay, this is somebody I really like, somebody
who's willing to take the time, put in the energy
to figure it out. And I thought I may make
a really good case study for him someday for a paper.
Speaker 1 (09:10):
You know. Interesting. So how did you learn to advocate
for yourself when you were working with these different doctors.
Speaker 2 (09:18):
Oh, I've always done that if something doesn't feel right,
and when I do finally go to the doctor, I'm
very stubborn. With my previous neurologist, there was just so
much going on with the neuropathy that I finally had
(09:40):
to push him to do an EMG on my legs
and I wanted him to do an EMG on my
arms because my arms were having tremors, and he finally did,
but then he put in the notes that I wanted
him to check carpal tunnel. I'm like, that's not what
(10:04):
I want it.
Speaker 1 (10:08):
Raymond highlights the importance of not simply telling your doctor
what you're experiencing, but making sure that your information can
be part of an accurate foundation for your action plan.
Documentation is such an important aspect of navigating the healthcare system.
As mentioned in an article within the Journal of Medical Systems,
the quality of clinical documentation has a critical impact on
(10:32):
the quality of patient care, patient safety, and the number
of medical errors. Do you think your experience as a
caregiver helped inform you how to navigate the healthcare system.
Speaker 2 (10:43):
I'm sure it did because I had to do so
much for my mom. It was frustrating, so me having
to be forceful with the doctors, even her regular doctors.
Speaker 1 (10:57):
Well, it sounds like she was very lucky to have
a son like you, and after she passed in twenty twenty,
you found yourself needing to lean on a support system
of your own. How did being a caregiver for your
mother change your outlook on managing your condition?
Speaker 2 (11:14):
It made me realize that you have to have those
type of people in your life. COVID unfortunately made it difficult,
and there's a lot of people that go through what
I went through in terms of when you start having
these weird symptoms like the struggling with eating and the
(11:37):
drooping eyes and the double vision which makes it difficult
to drive at times. And I found myself for the
most part, not wanting to be around anybody and COVID
just kind of compounded that I have one very small
(11:58):
group of friends now, whereas before I used to have
a very large group of friends that I hung out with.
You know, we would do pool parties on a regular occasion.
But I can't be out in the heat, and I
can't be out in the cold when it gets really
cold here. Those things exacerbate everything, you know, So when
(12:23):
you go to a pool party and you can only
be out in the heat for fifteen minutes at a time,
and then you have to go inside and nobody else
is inside and kind of takes all the fun out
of being at a pool party. So my group of
friends just kind of got smaller and smaller and smaller,
and it's it's been difficult since COVID eased up and
(12:49):
everything kind of got back to normal, it's been difficult
for me to get back to trying to enlarge that
group of friends again, because I'm not the social butterfly anyhow.
You know, I had people that would literally have to
drag me.
Speaker 1 (13:08):
Out, Oh you were that I see.
Speaker 2 (13:10):
To do something, you know, because I don't like going
out to bars. I've never been that type of person. Now,
you know, my group of friends. We get together regularly
for lunch or I do whiskey tastings with home or
something like that. Yeah, I have. You can see the
(13:31):
collection behind me.
Speaker 1 (13:33):
I actually do see that part of it.
Speaker 2 (13:37):
Yeah, I'm a whiskey nerd.
Speaker 1 (13:39):
You know what that works, right? I mean, did your
friends have trouble understanding your condition?
Speaker 2 (13:48):
No, because nobody knew, and it wasn't until I actually
got the diagnosis and I started treatment that I actually
put it out. They're on Facebook, and I'm not active
on social media a lot and especially sharing personal things,
(14:10):
you know, But I thought this is the best way
to let everybody know what's going on. And I did
get some positive responses, But I don't know that people
really other than the ones that I'm really close to,
I don't know how much they really understand. Because when
I do turn down invitations, it's usually because I just
(14:35):
don't have the energy to go out or I don't
have the desire to be around people for whatever is
going on in my physical being at the time.
Speaker 1 (14:48):
And you add that to your disposition anyway, and it
just sort of, yeah, you weren't feeling it. How did
you manage this change in social interactions due to your
speech issues.
Speaker 2 (15:01):
I just kind of don't say much. I'm not a
big talker to begin with, and so it was on brand. Then, yeah,
it was really on brand. I would sit back and
I used to always say, I smile and nod.
Speaker 1 (15:19):
And so did that smiling and nodding? Did that make
managing your symptoms more isolating?
Speaker 2 (15:25):
I don't know if it made it more isolating or
if it just made it easier to not talk about it.
I have always been the type person that never really
shared a lot of personal details except with very close people.
(15:45):
I mean, even a lot of my family doesn't know
what's going on. I don't have a lot of contact
with most of my family after my mom passed away.
She was the glue that held everything together.
Speaker 1 (15:58):
I see, you know.
Speaker 2 (16:00):
But yeah, even before that, though, after I moved out
when I was sixteen, there was not a lot of
contact in terms of just telling family members what was
physically going on with me.
Speaker 1 (16:16):
Where did you go when you left home?
Speaker 2 (16:19):
My parents left me. Oh, we were living in northern
California and my father was pastoring a church there. My
mother's health was ify and they wanted to move down
to central California to be closer to my aunt, and
(16:39):
I was in between my sophomore in junior year in
high school, and it was the first time in high school.
Was the first time I ever really felt like I
had a community in school. We had moved around so
(16:59):
much much growing up, and so I never had a
chance to really make friends, and I did not want
to leave. I see, I'm like, I'm not moving. You
guys can move, you can go by, I'm not leaving.
And so I finished high school on my own, moved
(17:23):
to San Diego after that, went to college for a
year to study music.
Speaker 1 (17:29):
So was there any point during your MPG journey when
you would have liked a closer relationship with your biological family. No, Okay.
Speaker 2 (17:41):
I grew up in a very conservative religious ultra fundamental.
My father was a Nazarine minister, and I always used
to joke with people that I was born with a
pink bow, you know. So growing up in that environment,
(18:02):
I was just who I was and that didn't sit
well with my father or my brothers. But my mom
she never really cared. She was like, let him be him,
you know.
Speaker 1 (18:16):
Yeah. So it sounds like it makes your chosen family
that much more important.
Speaker 2 (18:20):
It really does.
Speaker 1 (18:24):
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, Argenics is dedicated
to researching transformative medicines through clinical trials. Clinical trials help
(18:45):
enhance lives, improve care, and support research towards developing therapies
for various rare conditions. For more information about upcoming clinical trials,
visit argenics dot com, slash patients, slash clinical trials, and
(19:07):
now back to untold stories. So a big part of
managing your relationships alongside a severe condition is learning how
to set boundaries, especially when you face fatigue and flare ups.
How did you manage your energy as your condition evolved?
Speaker 2 (19:27):
For me, it was figuring out when I would have
to plan things to do. So I knew that mornings
were the easiest for me to do things because I
know that I am going to be exhausted later on
(19:48):
in the afternoon, and then you know, if I sit down, relax, rest,
then by middle afternoon, I'm okay, I can do a
little bit more.
Speaker 1 (20:00):
So, what are some of your favorite ways to recharge
or to manage those boundaries.
Speaker 2 (20:06):
I do a lot of art now. I was a
designer when I was in architecture. I went back to
school got my degree in graphic design and graphic arts,
and so that's kind of what I do to recharge,
is I just sit. I put on something stupid. Like
(20:28):
lately it's been bar rescue, Okay, I mean that is
like the lowest of the common denominator of stupid. They
rescue a bar though, but it yeah, well sometimes, but
it's good reality.
Speaker 1 (20:44):
To me, you know, well, especially for a whiskey fan, right.
Speaker 2 (20:48):
Yeah, yeah, And I do a lot of research on whiskey,
and my hope is someday to maybe write a book
about whiskey, but I want to do it from from
perspective than every other book that's out there. So I'm
also reading a lot of books about whiskey. So that's
(21:11):
pretty much how I relax and let my body recharge.
Speaker 1 (21:18):
Listening to Raymond talk about his MG management, he is
so cool, calm and collected. Knowing he's been living with
HIV for forty years, I imagine that facing the stigma
and uncertainty of such condition must have impacted the way
he moves through life with MG.
Speaker 2 (21:37):
When I found out I was HIV positive. I know,
this was back in nineteen eighty three.
Speaker 1 (21:44):
Wow.
Speaker 2 (21:44):
I had a doctor who told me to prepare that
I would be dead in two years. And when I
walked out of his office, I said, watch me. And
I didn't and start medication until two thousand and eight.
(22:05):
What because I was what they called an elite patient
where for whatever reason, my T cells stayed high and
my viral loads stayed low, and so I never did
go on medication until the science finally caught up to
(22:25):
everything and they were like, hmm, no, you really need
to go on medication. And so part of that is
probably why I have such severe neuropathy now. And so
had I started medication earlier, who knows, it's six to
one half dozen of another forty years later. I'm still
(22:46):
here though, So yes.
Speaker 1 (22:48):
That's amazing, remon I mean, I remember those times and
it was so scary, you know when the doctor said that,
like that was probably not an exaggeration, right.
Speaker 2 (22:58):
It wasn't. I mean I can't even begin to tell
you how many friends I lost during that time, you know. Yeah,
that decade was very hard decade for all of us.
Speaker 1 (23:15):
Yeah, and did that experience help you to manage the
fears around a debilitating diagnosis.
Speaker 2 (23:23):
Oh yeah, yeah, I don't have any fear about it anymore.
I think it just made me roll with the punches.
My whole thing is just do what you can to
make sure that you stay healthy and don't let yourself
(23:43):
get too depressed about it. I mean, every now and
then you just yeah, everything hits all at once and
you just kind of go, ah, screw it.
Speaker 1 (23:57):
Yeah, take a pause today. Were there any lessons that
you were able to learn from managing HIV that helped
you navigate stigma on your MG journey.
Speaker 2 (24:06):
My biggest lesson with HIV was just to block out
the negativity and just not listen to it, not let
it become a part of who I was. I pretty
much ignored all of that. I've never been shy about
telling people I was gay. I was never shy about
(24:29):
telling people I was HIV positive. And I think that's
probably for me why I never really worried about the stigma,
Because I've always been the type of person is if
you don't mike me, screw you, I gotta go.
Speaker 1 (24:50):
You know, that's awesome.
Speaker 2 (24:52):
There are other people out there, you know.
Speaker 1 (24:55):
And I don't really need to see a lot of
people anyway, So I'm good. Yeah. In terms of sharing
your resilience, have you gotten involved with groups like the
MGA or any LGBTQ focus programs.
Speaker 2 (25:08):
I'm still getting into that. Like I said, I find
it hard to really get myself out there. But MGA
has a support group that is specifically for the LGBT communities.
It's called I think Pride MG or something like that,
(25:31):
and it's headquartered here and it's a small group. Right now,
We've only met a couple of times and it's virtually
it's only been maybe four or five people at once,
you know, right now, But I'm sure it will be growing.
Even though it's virtually it's still good to get on
(25:54):
there and just talk. Being able to talk with our family, Yeah,
to discuss issues that sometimes they're totally unrelated to MG,
but they're related to the LGBT community and how we
(26:15):
interact with that community and MG at the same time.
Speaker 1 (26:21):
The intersection.
Speaker 2 (26:23):
Yeah.
Speaker 1 (26:25):
And so now that you've learned to live with a
severe autoimmune condition, what do you hope others would better
understand about the experience.
Speaker 2 (26:33):
People need to know that when people with MG say
we don't feel like going out. It's not yeah, I
don't feel like going out tonight, it's we don't physically
feel like going out and don't take it personally. It's
not because we don't want to go out with you.
(26:55):
We don't want to go out with anybody.
Speaker 1 (26:59):
Yes, it's like if I can, I would, but I can't. Yeah, well, Raymond,
that's all we have. I so appreciated this time to
speak with you today. Your candidness is so palpable, and
I really appreciate it.
Speaker 2 (27:12):
Well, I appreciate it too. This was fun. I didn't
know that I would actually have so much fun doing
it first time. For everything, I guess.
Speaker 1 (27:22):
And that's it, it really is. It's just that idea
of sharing and just being so open and honest. And
I know that this is going to help people who
listen to it.
Speaker 2 (27:31):
Well, I hope so, because that's the reason for doing it.
You know, for me, my journey may be an easy
one so far comparatively to other people that I know,
even those in the group that I belong to, But
there's hope for everybody with this disease. It's just learning
(27:54):
how to live with it, learning how to advocate for
yourself with your doctors, and you have to stand up
for yourself. Nobody else is going to do it. So
I think that's the best advice that I could give anybody,
(28:15):
And to just listen to your body. It's okay to
say no.
Speaker 1 (28:21):
Well, I'm glad you said yes to talking to us today.
I am too, Thank you so much. Raymond is such
a light. Living with a chronic condition for forty years
and understanding the power of caregiving have both informed his
outlook on his MG. Though new to his diagnosis, Raymond's
(28:42):
confidence and positivity are undeniable. That's it for season two
of Untold Stories. Thanks for joining us today. Be sure
to subscribe and stay connected for details about future episodes.
Untold Stories Life with a Severe Autoimmune Condition is produced
by Ruby's Studio from iHeartMedia in partnership with Argenix and
(29:04):
hosted by me Martine Hackett. Our executive producer is Molly 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 Tyree Rush
This podcast is not intended to provide medical advice. Please
talk to your doctor about any medical concerns. Hi, everyone,
and welcome to the season two finale of Untold Stories
Life with a Severe Autoimmune Condition. This podcast is a
production of Ruby Studio in partnership with Argenix, and I'm
(00:22):
your host, Martine Hackett. 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
(00:46):
with an autoimmune condition 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.
As we've come to understand throughout this series, the symptoms
of mayasthenia gravis or MG have a very nuanced effect
(01:09):
on those living with it, from changing family dynamics to
learning to manage symptoms alongside other conditions. Many defining moments
make up life with MG for over forty years. Today's guest, Raymond,
navigated the challenges of living with HIV serving as a
caregiver for his mother before her passing. Raymond was devastated
(01:30):
by the loss of his closest family member. Soon after
she died in twenty twenty, he began developing double vision
and muscle spasms, and despite several negative MG tests, he
remained persistent in the pursuit of a neurologist who could
be a partner in his journey handling grief, social distancing,
and two chronic conditions. He learned to lean into his
(01:52):
chosen family and be mindful of how he spends his energy. Hi, Raymond,
I'm so happy we get to chat today.
Speaker 2 (02:04):
Hello Martin.
Speaker 1 (02:05):
And I know that people can't see you, but with
your nose piercing and incredibly long beard, I have to
admit I think you might be the coolest guest we've
had on the show.
Speaker 2 (02:17):
I'm not sure about that, but hey, yeah.
Speaker 1 (02:20):
Take at the start anyway. Yeah, okay, wonderful. Well let's
get started. And what I would love to know about
first is what was your life like before getting your
MG diagnosis? What were some of your earliest symptoms.
Speaker 2 (02:35):
Well, it's kind of interesting because I really didn't associate
any of my symptoms with anything. Really. I had moved
to care for my mom. I had retired from architecture
and interior design and ride around twenty nineteen or so.
(02:56):
Her health really started to fail and so there was
all the stress of that, and then in May of
twenty twenty she passed away after having a stroke and
all of that. And so when I started experiencing symptoms,
I just associated it with stress, you know, trying to
(03:21):
arrange funeral arrangements in the middle of a pandemic, and
you know, dealing with family who was stressful in their
own way. And so the fatigue, not feeling like doing anything,
which I thought, okay, maybe that's depression. And still, you know,
(03:43):
I've always been the type of person that unless it
was really seriously wrong, I never really sought out help.
I've been relatively healthy for the majority of my life.
I did have a cancer diagnosis years ago, and I
have been HIV positive for forty years, but relatively healthy
(04:06):
with that. So all of those symptoms that are associated
with the initial onset of MG I just attributed distress
and a little bit of depression. It wasn't until I
started having difficulties swallowing and my speech. I was starting
(04:28):
to notice, you know, slurring a little bit, and my
friends were starting to notice it. And you know, the
weirdest types of foods would trigger, like citrus for whatever reason,
I would have trouble swallowing. And it wasn't until I
(04:49):
started having double vision that I thought, okay, something's weird.
And still I thought it was just vision related. So
I went to my optomic matrist and she was like, okay, well,
we can try a whether they call it a Fresnel
lens or a Fresnel lens, you know where they do
(05:10):
a prism and it's just a sticker. And she said,
let's try this, but in the meantime, I want you
to see a neural ophthalmologist. And so a couple of
weeks after I saw her, I went and saw the
neural ophthalmologist and he did the tests for MG. The
(05:33):
blood work. Now I had also had that done by
my neurologist prior, and it came back negative, and you know,
he just never followed up on it. But the neuro ophthalmologist,
when all that came back negative. He said, well, that
doesn't mean, you know, we're not going to stop there,
(05:54):
and so he had the foresight to go ahead and
ordered the SF, the single fiber EMG, and that came
back positive, okay, And so he immediately started me on
what would normally be the standard treatment and I responded
(06:16):
well to that, so that kind of confirmed the diagnosis.
Speaker 1 (06:24):
A single fiber electromiography or EMG testing measures the speed
and strength of electrical signals sent from the nerves to
the muscles. It's proven to be the most sensitive technique
in detecting a neuromuscular transmission defect, and is especially useful
in diagnosing conditions like myasthenia gravis. EMG tests are used
(06:44):
to diagnose neuropathy, which is a form of nerve damage
in which the peripheral nerves that carry signals between the
brain and other parts of the body misfire. As a result,
the symptoms can range from pain and muscle weakness to
complete loss of seas sensation.
Speaker 2 (07:03):
There were problems that had been arising with other things
that were related to my neuropathy, and so we kind
of went back and forth for a while, and then
I just said Okay, I'm finding another neurologist. And so
(07:25):
I found a new neurologist, and it turns out that
he was actually one of the specialists in this area
that deals in myas thenogravs. Oh what it is just
by happenstance? Okay, I think we're very lucky here in
the Kansas City metro that we have the Myastheniogravs Association
(07:48):
is headquartered here. Yes, we've got I don't know, probably
at least three or four neurologists that specialize in myastheniogravs here.
Speaker 1 (08:00):
Wow.
Speaker 2 (08:00):
You know, it was like one of those things where
one thing led to another and everything just kind of
fell into place. And then I started seeing my new
neurologist and he was like, by that time, my symptoms
had gotten so bad that he was like, we need
(08:22):
to start you immediately on IVIG and so my diagnosis
is literally a year old.
Speaker 1 (08:31):
What made your current neurologist different from the others.
Speaker 2 (08:35):
I think one of the first things when I first
found him was the last thing he said to me
before we left after that first appointment was no matter
how long it takes, we're going to figure out what's
going on.
Speaker 1 (08:50):
Wow.
Speaker 2 (08:51):
No other doctor had ever said that to me, and
I thought, Okay, this is somebody I really like, somebody
who's willing to take the time, put in the energy
to figure it out. And I thought I may make
a really good case study for him someday for a paper.
Speaker 1 (09:10):
You know. Interesting. So how did you learn to advocate
for yourself when you were working with these different doctors.
Speaker 2 (09:18):
Oh, I've always done that if something doesn't feel right,
and when I do finally go to the doctor, I'm
very stubborn. With my previous neurologist, there was just so
much going on with the neuropathy that I finally had
(09:40):
to push him to do an EMG on my legs
and I wanted him to do an EMG on my
arms because my arms were having tremors, and he finally did,
but then he put in the notes that I wanted
him to check carpal tunnel. I'm like, that's not what
(10:04):
I want it.
Speaker 1 (10:08):
Raymond highlights the importance of not simply telling your doctor
what you're experiencing, but making sure that your information can
be part of an accurate foundation for your action plan.
Documentation is such an important aspect of navigating the healthcare system.
As mentioned in an article within the Journal of Medical Systems,
the quality of clinical documentation has a critical impact on
(10:32):
the quality of patient care, patient safety, and the number
of medical errors. Do you think your experience as a
caregiver helped inform you how to navigate the healthcare system.
Speaker 2 (10:43):
I'm sure it did because I had to do so
much for my mom. It was frustrating, so me having
to be forceful with the doctors, even her regular doctors.
Speaker 1 (10:57):
Well, it sounds like she was very lucky to have
a son like you, and after she passed in twenty twenty,
you found yourself needing to lean on a support system
of your own. How did being a caregiver for your
mother change your outlook on managing your condition?
Speaker 2 (11:14):
It made me realize that you have to have those
type of people in your life. COVID unfortunately made it difficult,
and there's a lot of people that go through what
I went through in terms of when you start having
these weird symptoms like the struggling with eating and the
(11:37):
drooping eyes and the double vision which makes it difficult
to drive at times. And I found myself for the
most part, not wanting to be around anybody and COVID
just kind of compounded that I have one very small
(11:58):
group of friends now, whereas before I used to have
a very large group of friends that I hung out with.
You know, we would do pool parties on a regular occasion.
But I can't be out in the heat, and I
can't be out in the cold when it gets really
cold here. Those things exacerbate everything, you know, So when
(12:23):
you go to a pool party and you can only
be out in the heat for fifteen minutes at a time,
and then you have to go inside and nobody else
is inside and kind of takes all the fun out
of being at a pool party. So my group of
friends just kind of got smaller and smaller and smaller,
and it's it's been difficult since COVID eased up and
(12:49):
everything kind of got back to normal, it's been difficult
for me to get back to trying to enlarge that
group of friends again, because I'm not the social butterfly anyhow.
You know, I had people that would literally have to
drag me.
Speaker 1 (13:08):
Out, Oh you were that I see.
Speaker 2 (13:10):
To do something, you know, because I don't like going
out to bars. I've never been that type of person. Now,
you know, my group of friends. We get together regularly
for lunch or I do whiskey tastings with home or
something like that. Yeah, I have. You can see the
(13:31):
collection behind me.
Speaker 1 (13:33):
I actually do see that part of it.
Speaker 2 (13:37):
Yeah, I'm a whiskey nerd.
Speaker 1 (13:39):
You know what that works, right? I mean, did your
friends have trouble understanding your condition?
Speaker 2 (13:48):
No, because nobody knew, and it wasn't until I actually
got the diagnosis and I started treatment that I actually
put it out. They're on Facebook, and I'm not active
on social media a lot and especially sharing personal things,
(14:10):
you know, But I thought this is the best way
to let everybody know what's going on. And I did
get some positive responses, But I don't know that people
really other than the ones that I'm really close to,
I don't know how much they really understand. Because when
I do turn down invitations, it's usually because I just
(14:35):
don't have the energy to go out or I don't
have the desire to be around people for whatever is
going on in my physical being at the time.
Speaker 1 (14:48):
And you add that to your disposition anyway, and it
just sort of, yeah, you weren't feeling it. How did
you manage this change in social interactions due to your
speech issues.
Speaker 2 (15:01):
I just kind of don't say much. I'm not a
big talker to begin with, and so it was on brand. Then, yeah,
it was really on brand. I would sit back and
I used to always say, I smile and nod.
Speaker 1 (15:19):
And so did that smiling and nodding? Did that make
managing your symptoms more isolating?
Speaker 2 (15:25):
I don't know if it made it more isolating or
if it just made it easier to not talk about it.
I have always been the type person that never really
shared a lot of personal details except with very close people.
(15:45):
I mean, even a lot of my family doesn't know
what's going on. I don't have a lot of contact
with most of my family after my mom passed away.
She was the glue that held everything together.
Speaker 1 (15:58):
I see, you know.
Speaker 2 (16:00):
But yeah, even before that, though, after I moved out
when I was sixteen, there was not a lot of
contact in terms of just telling family members what was
physically going on with me.
Speaker 1 (16:16):
Where did you go when you left home?
Speaker 2 (16:19):
My parents left me. Oh, we were living in northern
California and my father was pastoring a church there. My
mother's health was ify and they wanted to move down
to central California to be closer to my aunt, and
(16:39):
I was in between my sophomore in junior year in
high school, and it was the first time in high school.
Was the first time I ever really felt like I
had a community in school. We had moved around so
(16:59):
much much growing up, and so I never had a
chance to really make friends, and I did not want
to leave. I see, I'm like, I'm not moving. You
guys can move, you can go by, I'm not leaving.
And so I finished high school on my own, moved
(17:23):
to San Diego after that, went to college for a
year to study music.
Speaker 1 (17:29):
So was there any point during your MPG journey when
you would have liked a closer relationship with your biological family. No, Okay.
Speaker 2 (17:41):
I grew up in a very conservative religious ultra fundamental.
My father was a Nazarine minister, and I always used
to joke with people that I was born with a
pink bow, you know. So growing up in that environment,
(18:02):
I was just who I was and that didn't sit
well with my father or my brothers. But my mom
she never really cared. She was like, let him be him,
you know.
Speaker 1 (18:16):
Yeah. So it sounds like it makes your chosen family
that much more important.
Speaker 2 (18:20):
It really does.
Speaker 1 (18:24):
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, Argenics is dedicated
to researching transformative medicines through clinical trials. Clinical trials help
(18:45):
enhance lives, improve care, and support research towards developing therapies
for various rare conditions. For more information about upcoming clinical trials,
visit argenics dot com, slash patients, slash clinical trials, and
(19:07):
now back to untold stories. So a big part of
managing your relationships alongside a severe condition is learning how
to set boundaries, especially when you face fatigue and flare ups.
How did you manage your energy as your condition evolved?
Speaker 2 (19:27):
For me, it was figuring out when I would have
to plan things to do. So I knew that mornings
were the easiest for me to do things because I
know that I am going to be exhausted later on
(19:48):
in the afternoon, and then you know, if I sit down, relax, rest,
then by middle afternoon, I'm okay, I can do a
little bit more.
Speaker 1 (20:00):
So, what are some of your favorite ways to recharge
or to manage those boundaries.
Speaker 2 (20:06):
I do a lot of art now. I was a
designer when I was in architecture. I went back to
school got my degree in graphic design and graphic arts,
and so that's kind of what I do to recharge,
is I just sit. I put on something stupid. Like
(20:28):
lately it's been bar rescue, Okay, I mean that is
like the lowest of the common denominator of stupid. They
rescue a bar though, but it yeah, well sometimes, but
it's good reality.
Speaker 1 (20:44):
To me, you know, well, especially for a whiskey fan, right.
Speaker 2 (20:48):
Yeah, yeah, And I do a lot of research on whiskey,
and my hope is someday to maybe write a book
about whiskey, but I want to do it from from
perspective than every other book that's out there. So I'm
also reading a lot of books about whiskey. So that's
(21:11):
pretty much how I relax and let my body recharge.
Speaker 1 (21:18):
Listening to Raymond talk about his MG management, he is
so cool, calm and collected. Knowing he's been living with
HIV for forty years, I imagine that facing the stigma
and uncertainty of such condition must have impacted the way
he moves through life with MG.
Speaker 2 (21:37):
When I found out I was HIV positive. I know,
this was back in nineteen eighty three.
Speaker 1 (21:44):
Wow.
Speaker 2 (21:44):
I had a doctor who told me to prepare that
I would be dead in two years. And when I
walked out of his office, I said, watch me. And
I didn't and start medication until two thousand and eight.
(22:05):
What because I was what they called an elite patient
where for whatever reason, my T cells stayed high and
my viral loads stayed low, and so I never did
go on medication until the science finally caught up to
(22:25):
everything and they were like, hmm, no, you really need
to go on medication. And so part of that is
probably why I have such severe neuropathy now. And so
had I started medication earlier, who knows, it's six to
one half dozen of another forty years later. I'm still
(22:46):
here though, So yes.
Speaker 1 (22:48):
That's amazing, remon I mean, I remember those times and
it was so scary, you know when the doctor said that,
like that was probably not an exaggeration, right.
Speaker 2 (22:58):
It wasn't. I mean I can't even begin to tell
you how many friends I lost during that time, you know. Yeah,
that decade was very hard decade for all of us.
Speaker 1 (23:15):
Yeah, and did that experience help you to manage the
fears around a debilitating diagnosis.
Speaker 2 (23:23):
Oh yeah, yeah, I don't have any fear about it anymore.
I think it just made me roll with the punches.
My whole thing is just do what you can to
make sure that you stay healthy and don't let yourself
(23:43):
get too depressed about it. I mean, every now and
then you just yeah, everything hits all at once and
you just kind of go, ah, screw it.
Speaker 1 (23:57):
Yeah, take a pause today. Were there any lessons that
you were able to learn from managing HIV that helped
you navigate stigma on your MG journey.
Speaker 2 (24:06):
My biggest lesson with HIV was just to block out
the negativity and just not listen to it, not let
it become a part of who I was. I pretty
much ignored all of that. I've never been shy about
telling people I was gay. I was never shy about
(24:29):
telling people I was HIV positive. And I think that's
probably for me why I never really worried about the stigma,
Because I've always been the type of person is if
you don't mike me, screw you, I gotta go.
Speaker 1 (24:50):
You know, that's awesome.
Speaker 2 (24:52):
There are other people out there, you know.
Speaker 1 (24:55):
And I don't really need to see a lot of
people anyway, So I'm good. Yeah. In terms of sharing
your resilience, have you gotten involved with groups like the
MGA or any LGBTQ focus programs.
Speaker 2 (25:08):
I'm still getting into that. Like I said, I find
it hard to really get myself out there. But MGA
has a support group that is specifically for the LGBT communities.
It's called I think Pride MG or something like that,
(25:31):
and it's headquartered here and it's a small group. Right now,
We've only met a couple of times and it's virtually
it's only been maybe four or five people at once,
you know, right now, But I'm sure it will be growing.
Even though it's virtually it's still good to get on
(25:54):
there and just talk. Being able to talk with our family, Yeah,
to discuss issues that sometimes they're totally unrelated to MG,
but they're related to the LGBT community and how we
(26:15):
interact with that community and MG at the same time.
Speaker 1 (26:21):
The intersection.
Speaker 2 (26:23):
Yeah.
Speaker 1 (26:25):
And so now that you've learned to live with a
severe autoimmune condition, what do you hope others would better
understand about the experience.
Speaker 2 (26:33):
People need to know that when people with MG say
we don't feel like going out. It's not yeah, I
don't feel like going out tonight, it's we don't physically
feel like going out and don't take it personally. It's
not because we don't want to go out with you.
(26:55):
We don't want to go out with anybody.
Speaker 1 (26:59):
Yes, it's like if I can, I would, but I can't. Yeah, well, Raymond,
that's all we have. I so appreciated this time to
speak with you today. Your candidness is so palpable, and
I really appreciate it.
Speaker 2 (27:12):
Well, I appreciate it too. This was fun. I didn't
know that I would actually have so much fun doing
it first time. For everything, I guess.
Speaker 1 (27:22):
And that's it, it really is. It's just that idea
of sharing and just being so open and honest. And
I know that this is going to help people who
listen to it.
Speaker 2 (27:31):
Well, I hope so, because that's the reason for doing it.
You know, for me, my journey may be an easy
one so far comparatively to other people that I know,
even those in the group that I belong to, But
there's hope for everybody with this disease. It's just learning
(27:54):
how to live with it, learning how to advocate for
yourself with your doctors, and you have to stand up
for yourself. Nobody else is going to do it. So
I think that's the best advice that I could give anybody,
(28:15):
And to just listen to your body. It's okay to
say no.
Speaker 1 (28:21):
Well, I'm glad you said yes to talking to us today.
I am too, Thank you so much. Raymond is such
a light. Living with a chronic condition for forty years
and understanding the power of caregiving have both informed his
outlook on his MG. Though new to his diagnosis, Raymond's
(28:42):
confidence and positivity are undeniable. That's it for season two
of Untold Stories. Thanks for joining us today. Be sure
to subscribe and stay connected for details about future episodes.
Untold Stories Life with a Severe Autoimmune Condition is produced
by Ruby's Studio from iHeartMedia in partnership with Argenix and
(29:04):
hosted by me Martine Hackett. Our executive producer is Molly 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 Tyree Rush
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