June 21, 2023 • 27 mins
Navigating life with myasthenia gravis, or MG, often begins with a long road to diagnosis. For disabled veteran Shawna, the search for answers to her debilitating symptoms took several years. With the highs and lows of assistance from Veterans Affairs, she learned to navigate the healthcare system and make her voice heard, all while maintaining a positive outlook on her life with MG. Together with her caregiver and husband, Justin, Shawna has helped inspire the greater MG community with their blog, In Sickness and Nevermind, and redefined success for her own MG journey.
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Episode Transcript
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Speaker 1 (00:03):
Hello everyone, and welcome to the first episode of Untold
Stories Life with Mayasthenia Gravis, a podcast from iHeartRadio in
partnership with Argenics. I'm your host, Martine Hackett. I'm an
Associate professor and Director of Public Health Programs at Hostra University,
and as a researcher, professor, and public health expert, I've
(00:23):
spent my career studying the complex realities of health care
disparities and the diverse barriers people face. In this podcast,
I'll speak with real people living with mayasthenia Gravis, commonly
known as MG, about finding care and community along their
MG journey. Every person with MG has a unique story
to tell. By exploring what life with MG looks like,
(00:47):
we'll expand the conversation around this condition and its disproportionate
effect on underserved communities. In each episode, we'll recognize how
each MG journey is unique and powerful in its own way.
Will also share experiences with self advocacy and discuss the
role community and caregivers play in the lives of people
(01:07):
living with this rare disease. Before I introduce our first guest,
I think it's essential to explain exactly what MG is
Mayasthenia gravis is a rare autoimmune neuromuscular condition. The name
mayasthenia gravis literally means serious muscle weakness, which happens to
be the main symptom. MG affects the voluntary muscles of
(01:30):
the body, especially those that control the eyes, mouth, throat,
and limbs, and destroys communication between the nerves and muscles,
resulting in weakness.
Speaker 2 (01:40):
Naturally.
Speaker 1 (01:40):
With the barriers to proper care and the often long
road to diagnosis, MG creates many difficulties navigating everyday life,
but fortunately many have learned to overcome the obstacles MG
presents and create full and meaningful lives along the way,
like our first guest, Shauna. Shauna is a former combat
medic in the US Army who, after nearly four years
(02:03):
of service, was medically retired with the onset of her
health challenges. After her medical retirement, she pivoted to the
arts as a positive outlet, which bloomed into a love
of pottery, ceramics, and graphic design. An eternal optimist and
true force in the MG community, she helps others through
her writing at Mayasthenia Gravis News and as an ambassador
(02:25):
for the Travis Mills Foundation. Shauna has taken the last
few years to balance her creative pursuits and improving her health,
sharing her story alongside her caregiver and husband Justin in
their blog in Sickness and never Mind. Hi Shawna, thank
(02:45):
you so much for sharing your story with us today.
Speaker 2 (02:48):
Hi Martin, thanks for having me. I'm happy to Let's.
Speaker 1 (02:51):
Begin at the beginning. Can you start by telling us
how did your MG journey begin? When did you know
something was wrong?
Speaker 2 (02:58):
I am a disabled veteran and my health journey actually
started during my deployment to Iraq. Started having seizures while
I was deployed over there, I was exposed to open
burn pits and stuff, and anyway, my health continued to decline.
About a year later, I was medically retired. I had
been experiencing some brain fog and some weird weakness. I
was tripping a little bit, but didn't think anything of it.
(03:21):
About six months after I got out, I started having
some significant weakness where I was actually falling, and the
VA actually gave me a wheelchair. And this is two
thousand and twelve, so I'm twenty eight years old in
a wheelchair, and nobody knows why. But then about four
or five months later, I started having dysphasia and was
(03:43):
choking on my food again. Nobody knows why. There's some
mild swallow issues like food would stay stuck in my
esophagus before it would go down again. Nobody knows why.
Here's another pill to kind of, you know, fix it,
and then just increased weakness and fatigue. It wasn't until
(04:06):
two thousand and sixteen or twenty seventeen when I started
having potosis or I drooping on the right side, and
I saw my ophthalmologist at the VA, and he's the
one that said, I think you've got my senior gravis
and then you know, sent this information to my neurologist.
It wasn't until a year later I was hospitalized for
(04:32):
a week because I lost ten pounds because I couldn't eat.
I was choking and couldn't keep anything down. And then
I finally said, if you don't give me a chest CT,
you know we're going to have issues and I'm going
to file a complaint. We did the CT and I
had hyperplastic thighmus. So I said, okay, you obviously are
not being kept up to date with you know current research,
(04:53):
and I went to patient advocacy got a referral to
an MPT specialist in Maine. So long story took a
hot minute.
Speaker 1 (05:02):
Well, it seems to me that all along the way
that you were obviously advocating for yourself with your healthcare team,
what did you find to be sort of the most
impactful in terms of getting the care that you actually needed.
Speaker 2 (05:14):
Probably just sticking to my guns, not being afraid to
be the squeaky wheel and having to repeat, you know,
this is what's going on, this is what I've tried
over and over and over again, but also being willing
to meet the physicians halfway. So one of the things
I had to do with my neurologist to get her
to agree to a trial was agree to go see
(05:35):
a psychologist who could diagnose whether or not it was
PTSD related or what have you. And I saw two
different psychologists and counselors who both said, it is legitimate.
There is some kind of thing that is physically wrong.
Whether you know what it is or not, you're just
not doing the right tests.
Speaker 1 (05:56):
So, like you said, you had to sort of meet
them with what they were wanted to do to rule
other things out.
Speaker 2 (06:03):
Right, you swallow your pride a little bit, even though
you know it's not you know all in your head.
You got to be willing to meet halfway. And that
was I think the best thing.
Speaker 1 (06:12):
You mentioned your neurologist thinking about timing. If you'd seen
your neurologists earlier on, how do you think that would
have changed your MG journey.
Speaker 2 (06:22):
That's the thing is I was seeing her already for
the seizures because then I was having them on a
regular basis. I've been seizure free for six years now,
so she knew, and she did the EMGs and she
did the blood test. But because the tests were negative,
she was like, well, there's nothing wrong. She just focused
on the seizures because that's what she was looking for,
(06:44):
because that's what she was looking for. And you know,
it was, well, all of these tests that I know
to do are coming back negative. Okay, But here's the
research that I'm presenting to you from the National Institute
of Health. It's from you know, the Neurology Journal. Because
I still had all of those subscriptions because I was
trying to get into med school. So I was showing
(07:04):
you like this isn't you know Google doc here that
I'm giving you. It's legit stuff. You know, they tell
you not to look for a zebra when it should
be a herd of horses in med school, right, But
sometimes you also have to be open to the idea
that you're actually trying to find the unicorn. And I
heard of zebra's and I think that that fits a
(07:28):
lot of us more than the other.
Speaker 1 (07:30):
And to be open to what the patient is saying,
like you said, is happening in your own body? Right,
So as your MG progressed, how have you coped with
the emotional toll? Because over all these years, my goodness,
it just seems like it takes a lot to be
able to cope.
Speaker 2 (07:46):
It does. Part of it is by being open about
my journey and finding ways to help others that it
turns my pain and you know, my frustration and everything
else makes it a little more bearable. So if sharing
my journey through you know, the different platforms that I
share it on helps somebody else, maybe instead of it
(08:10):
taking them seven years, it takes them five, then it
makes it worth it. I have an amazing spouse who
supports me. I get regular counseling because there is a
grief aspect of it. And I acknowledge that I go
through the various stages of grief depending on the level
of disability. And I have, you know, other things to
(08:32):
keep me occupied, to try and help help me feel
like I've got a purpose.
Speaker 1 (08:40):
Absolutely, I mean it seems that you have done that
and then some with the ability to find your purpose
and like you said, to help others. And you mentioned
your husband justin Yeah, can you tell us a little
bit about your relationship with him and how you empower
him as your caregiver through this empty journey.
Speaker 2 (08:58):
Yep. So he's never known me healthy. He's only known
me since I got out of the army, a lot
of open communication. It's very much okay, today's not a
good day or today's a great day. But you know,
we still have to balance how much I do or
how much we do together with you know what's going
(09:19):
to happen on the back end, because flair fear is
is very real for both of us. Because if I
push too hard, then he has more work to do
as my caregiver, and he is my caregiver through a
program at the VA. He does most of the cooking,
he helps me with bathing, and all my appointments. He'll
(09:41):
take me to most of the you know, cleaning around
the house, and I mean he does most everything, but
it's you know, acknowledging the work that he does and
letting him know that I appreciate it, finding ways to
try and take some of that burden off, even if
it means, Okay, there's stuff I really want to do,
(10:01):
but I'm not going to because he needs a break,
and encouraging him to find his own stuff.
Speaker 1 (10:10):
Do you think that his role as your caregiver strengthened
your relationship.
Speaker 2 (10:15):
I think it's forced us to really improve our communication,
which in turn has strengthened our relationship because you know,
there are some really hard topics that we will sit
and it's okay, we need to sit and talk about
this and figure out a way to work around it.
And without that being the necessity, I don't know that
(10:36):
we would have gotten to where we are. But we
can have those hard conversations and nobody gets offended or
it's okay, well I get it. I don't like it,
but you're right, or you know, whatever the case may be.
Speaker 1 (10:51):
And like you said, the idea that this is all
you've known in terms of you know your your health status.
It probably sort of set the ground rules real or Yeah,
you know, when.
Speaker 2 (11:01):
We first got together, we were I could still walk,
and we laid it all out and it's okay, I've
got all these appointments. We don't know what's wrong with me,
but I've got this and this and this, And I
have a son from a previous marriage. He's twenty one now,
but at the time, you know, he didn't live with
me because I couldn't even take care of myself. I
had to move in with my parents when I get
(11:22):
out of the Army. So explaining all of that and
then that kind of really set the tone for our
relationship because it's you know, there's no secrets, there's no punches,
this is what's what, and you know, you set the
expectation and then it's just been building from there. We'll
celebrate ten years this year in August for our wedding anniversary.
(11:45):
That's awesome.
Speaker 1 (11:47):
You mentioned working with the VA. Are there stereotypes that
you think that we have within the army about not
getting help or not seeking care YEP.
Speaker 2 (11:58):
I think those are becoming fewer and fewer. But when
I first started, most days I had appointments. I was
the only female, and I was the youngest by at
least a decade. A lot of women don't seek care
at the VA because they feel like they're not seen
as veterans. And then I think the larger of the
(12:19):
stigmas with the VA is the mental health aspect. Now
I think there's not quite as much of one, and
people are starting to utilize the VA as it was intended.
But there's still a lot of hoops to jump through,
and you know, some of the programs you have to
prove your disability, like with the caregiver program. We have
(12:43):
quarterly assessments to prove that I'm still disabled even though
I am rated at one hundred total and permanent service connected,
which means my disabilities are service connected and there's no
chance of them getting better. You know, they're not going away. Shawna,
you mentioned about having to prove a disability with the VA.
Could you describe what what does that mean for me?
(13:06):
It's justifying how much help I actually get from my husband.
Can I cook for myself? Can I feed myself? Can
I bathe myself? Can I dress myself? So we have
to go through all of those and one of the
things that they haven't taken into account yet is the
variability of organic diseases like my senia gravis. If you
(13:28):
get me the week after I get my infusions, no,
I can dress myself if you get me the week
right before, when you know stuff is run its course. Yeah,
sometimes I need a lot of help.
Speaker 1 (13:40):
You know.
Speaker 2 (13:40):
He has to help me with the bathing and washing
my hair. And it's a really good thing that this
is a podcast and not a video show, because he
doesn't know how to do my makeup and I don't
know that I could hold my arms up enough to
do my makeup today. So it's you know, there's that,
and it's okay, Well, how many days does a flare last?
(14:00):
And what does a flare look like? Justifying the symptom
expression and how frequently it occurs with saying yes, I
do actually need this help in that way.
Speaker 1 (14:11):
You had mentioned that MG is now considered service related.
Can you elaborate a little bit more on that. Has
the VA determined that some aspects of military service are
making vets more vulnerable to conditions like MG.
Speaker 2 (14:24):
So there are a lot of different working theories, especially
for veterans who are deployed overseas and what a lot
of people will recognize as the Gulf War area because
of the heavy metals in the environment, but as well
as what we're exposed to with open burn pits, because
you know, there's medical waste gets burned, and batteries and
(14:46):
plastics and all of the things that you should not
burn gets burned and incinerated because that's the only way
to dispose of trash. There is acknowledgment that because of
these exposures, it opens you up to a whole host
of issues. And we know that a lot of autoimmune
disease can be triggered from chemical exposure, heavy metal exposure,
(15:08):
toxin exposre, you know, all of these different things, so
it just it makes you more susceptible. There are some
autoimmune diseases that are recognized as service connected because of
those exposures. But that's also why there is the caveat
that your symptoms have to show within a year of
service to prove that it's been service connected. It depends
and you know, if you didn't deploy and you were
(15:30):
to develop my senia gravis, it probably wouldn't be considered
service connected because you weren't exposed to the things that
they believe may have triggered, you know, the development of
an autoimmune disease.
Speaker 1 (15:46):
We'll be back with more untold stories Life with may
Asthenia Gravis.
Speaker 2 (15:50):
After a quick.
Speaker 1 (15:51):
Break as a global immunology company committed to improving the
lives of people living with severe autoimmune diseases, Ergenics is
dedicated to partnering with advocacy organizations, including the Conquer Myasthenia
Gravis Association or conquer MG, in support of the MG community.
Speaker 2 (16:13):
Conquer MG has been.
Speaker 1 (16:14):
Offering help and hope to individuals with myasthenia Gravis in Illinois,
Northwest Indiana, and southeast Wisconsin for more than fifty years.
Their mission is to facilitate the timely diagnosis and optimal
care of individuals affected by MG and to improve their
lives through patient services, public awareness, medical research, professional education, advocacy,
(16:38):
and patient care programs. For more information about conquer MG,
visit Wwwmyasthenia Gravis dot org. And now back to Untold
Stories Life with Myasthenia Gravis. Seanna, you have a service
(17:01):
dog named Andy, and how did you get him?
Speaker 2 (17:05):
Was?
Speaker 1 (17:05):
Did you were able to get him through the VA?
Speaker 2 (17:08):
No? Actually, I got Andy through an organization called Canines
on the front Line in Maine. They match rescue dogs
with disabled veterans with PTSD and then put us through
a training program together to train him to be a
service dog. So he helps me with my PTSD as well.
(17:32):
And I told them that I knew would need a
large dog because MG affects my mobility. So they found Andy,
who's a great Dane and Lab mix and we cross
trained him so that way he would be my service
dog for both the PTSD and the mice inior Gravis SHAWNA.
How does Andy help you day to day? So I
have ropes tied to the doors here in the house,
(17:56):
and he helps me close the doors and he will
open them by pushing them open. He knows how to brace,
so that way, if I need help getting up from
a seated position on the couch, I can use him
for stability. He picks things up off the floor for
me so I don't lose my balance, and you know,
topple head over tea kettle. He can close the dishwasher door,
(18:17):
the silverware drawers, the cabinets in the kitchen. He will
sit there and he'll help brace if I need help,
like getting out of the shower. That's one of the
reasons he's so big is to have a mobility service dog.
They have to be at least fifty percent of your
weight so that way you don't hurt them when you
use them for the mobility work. So he's a big
(18:37):
boy at one hundred and ten pounds and okay, yes,
thank you Andy. It's like you told me to get stuff.
He's like, here, you drop this. You need this, mom,
you need your cereal for the morning. And then he just,
you know, looks at you with these golden brown eyes
(18:58):
and says, the world's going to be okay, mama. It's
hard not to feel better when he looks at you
like that.
Speaker 1 (19:05):
Yeah.
Speaker 2 (19:05):
So he's doing many jobs it once. It's awesome.
Speaker 1 (19:11):
What advice would you have for other female veterans who
may be dealing with the VA in regards to a
rare disorder diagnosis, like, MG.
Speaker 2 (19:20):
You know what's going on with your body, don't let
anybody tell you that you don't. And being able to
stick to your guns, but not being hysterical or pushy,
being accepting that you might have a little bit of
a hurdle to get through to get to where you
need to be, but not to give up because it's again,
(19:44):
they don't know what they don't know. And if the
docs that you are seeing haven't treated a female vet,
they're not going to know what services you may or
may not need, or what health issues are common amongst
female veterans. When their primary demographic has been sixty seventy
eighty year old men, it may not be you. They
just have no idea what you need and it might
(20:05):
take some time for them to figure that out. My
primary care she's like, Okay, I have no idea, so
we're going to get you to the people that do.
And I have more respect for her because she said,
I don't know, but we're going to find out. Awesome.
Like that doesn't make me respect you any less as
my physician. If anything, it puts you, you know, higher
(20:27):
up on my pedestal of where you are as my doc.
Speaker 1 (20:30):
If there was something that you could tell healthcare providers
to help patients with MG feel heard or get the
care that they needed sooner, what would you tell them to.
Speaker 2 (20:39):
Listen and look at the whole person, try to help
them figure out how to explain what they're actually feeling
like because I know, like with the shortness of breath.
That's you know, a big one because it's well, I
can't get a good breath. Well, but what does that
feel like? You know, because they automatically always go to asthma. Well,
does it feel like your chestice site? No, it just
feels like I've got to catch and I can't get
(21:00):
a good breath. Finding better ways to explain or to
help your patients explain how they're feeling, because a lot
of times they just don't know, like, well, I'm tired, Well,
but what kind of tired? Because you know, that physical
feeling of being tired when you've exerted yourself too much
is much different than that feeling of tired because your
(21:22):
muscles just aren't working, you know, because of MG. Or
what does it look like with you know, the double
vision if you've get double vision? You know, okay, well
do you get double vision? Well, yes, but it looks
like this, or you have more options for people to
help them help you. There's a lot of talking past
(21:45):
each other, and I think that you know, the patient
gets frustrated because the doctor's not understanding, and then the
doctor assumes that they know what's going on, and then
it just creates this back and forth and frustration because
they're talking past each other and not actually hearing what
the other is saying.
Speaker 1 (22:03):
You mentioned earlier about how giving back to others that
are going through their MG journey is something that has
given you some strength through outlets with your blog and podcast.
What have you learned about the experiences of other people's
journey to MG diagnosis?
Speaker 2 (22:21):
That the average diagnosis, even in the private sector, is
seven to ten years, especially for women, which is unfortunate.
I've also learned that, even though the VA has its
own set of red tape and frustrations, that I'm exceptionally
lucky because I do have the VA care. I get
(22:44):
IVG every three weeks. We moved out here to Wisconsin
a year ago, and my care team out here is phenomenal.
So my neurologist signs off on it and I get
my meds and that's it, and I don't have to
worry about it. And I know that a lot of
my friends in the community it's a struggle to try
and get their meds approved. It's obnoxious, Shanna.
Speaker 1 (23:07):
When you think about people who are listening to this
podcast who are living with MG, what advice do you
have to give them.
Speaker 2 (23:15):
This may or may not come across the way that
I'm hoping it does. Okay, but I am very big
on not having a victim mentality. And what I mean
by that is, yes, MG really sucks, especially when you
are struggling to find that diagnosis. But it doesn't have
(23:35):
to define your limitations. It's you can have your bad
days and you can do the woe as me and Okay,
this really sucks, and you have your pretty party for
a day, but you don't sit there and do the well,
you know, nobody likes me, nobody understands, nobody gets it.
You know, I don't have any you know whatever all
(23:57):
of these negative things are, because there's also a lot
of really good positives if you know where to look for.
Try to live and not just survive. And that's the
biggest one is I just see too many people just
sitting and wallowing in that pity party, which doesn't help
(24:17):
because stress and all those negative emotions makes the MG worse.
So you're just putting yourself in a spiral, and that
doesn't do anybody any good.
Speaker 1 (24:26):
I saw a quote in your blog that I want
to read back to you. Okay, sometimes we have to
get out of our own way to live our best lives.
Speaker 2 (24:36):
Yep, it's true. I owned a print shop in Maine
before we moved out here, and I had to close
it because I had my first myasthantic crisis I never recovered.
Came out here about a year ago and based on
what I can do with you know, most of my
good days with MG, I relaunched my web design business.
(24:59):
But I have boundary set so that way I don't
go back to where I was. So just because you
can't do what you used to do doesn't mean that
you still can't do other stuff.
Speaker 1 (25:12):
And it's also about living in the past right your
past self and how you viewed yourself, and you can't
keep holding that image. You're different. Things have changed, and.
Speaker 2 (25:21):
When you get out of your own way and focus
on what you can do, you never know you know
what that path is going to look like.
Speaker 1 (25:29):
Is there anything you hope to tell the MG community
as a whole.
Speaker 2 (25:34):
There's things that we can do for ourselves. Whether we're
getting the care that we need or deserve, there's other
things that we can be doing for ourselves so that
we can live our best lives within our capabilities. You
just have to be willing to look on that side
of the coin and not, you know, kind of sit
(25:55):
there and only see the negative. Once you get a
diagnosis us with a rare disease like MG, it's the
you that you are now is what you need to
focus on instead of the you that you were before,
because focusing on before is just gonna keep you in
a depressive state and that's just not good for anybody.
Speaker 1 (26:18):
So well said Shauna with that, I appreciate your time.
Thank you so much for sharing with us.
Speaker 2 (26:24):
Thank you.
Speaker 1 (26:29):
It was really great being able to listen to Shauna
and hear about her experiences and to meet her dog Andy.
Speaker 2 (26:36):
But I'll say it's all.
Speaker 1 (26:37):
Too common to hear about the barriers to care for
people living with MG. So whether making your voice heard
or helping advocate for someone you love, honest conversations with
your healthcare provider are key to finding the right treatment
plan for you and feeling empowered along the way.
Speaker 2 (26:53):
Don't forget to.
Speaker 1 (26:54):
Join us every other week to hear more powerful stories
of life with MG. Untold stories. Life with Mayasthenia Gravis
was produced by iHeartRadio in partnership with our gen X
and Closer Look and hosted by me Martine Hackett. Our
executive producer is Mali Soosha, our EP of Post Production
is Matt Stillo, and our producer is Sierra Kaiser. This
(27:17):
episode was written and produced by Tyree Rush
Hello everyone, and welcome to the first episode of Untold
Stories Life with Mayasthenia Gravis, a podcast from iHeartRadio in
partnership with Argenics. I'm your host, Martine Hackett. I'm an
Associate professor and Director of Public Health Programs at Hostra University,
and as a researcher, professor, and public health expert, I've
(00:23):
spent my career studying the complex realities of health care
disparities and the diverse barriers people face. In this podcast,
I'll speak with real people living with mayasthenia Gravis, commonly
known as MG, about finding care and community along their
MG journey. Every person with MG has a unique story
to tell. By exploring what life with MG looks like,
(00:47):
we'll expand the conversation around this condition and its disproportionate
effect on underserved communities. In each episode, we'll recognize how
each MG journey is unique and powerful in its own way.
Will also share experiences with self advocacy and discuss the
role community and caregivers play in the lives of people
(01:07):
living with this rare disease. Before I introduce our first guest,
I think it's essential to explain exactly what MG is
Mayasthenia gravis is a rare autoimmune neuromuscular condition. The name
mayasthenia gravis literally means serious muscle weakness, which happens to
be the main symptom. MG affects the voluntary muscles of
(01:30):
the body, especially those that control the eyes, mouth, throat,
and limbs, and destroys communication between the nerves and muscles,
resulting in weakness.
Speaker 2 (01:40):
Naturally.
Speaker 1 (01:40):
With the barriers to proper care and the often long
road to diagnosis, MG creates many difficulties navigating everyday life,
but fortunately many have learned to overcome the obstacles MG
presents and create full and meaningful lives along the way,
like our first guest, Shauna. Shauna is a former combat
medic in the US Army who, after nearly four years
(02:03):
of service, was medically retired with the onset of her
health challenges. After her medical retirement, she pivoted to the
arts as a positive outlet, which bloomed into a love
of pottery, ceramics, and graphic design. An eternal optimist and
true force in the MG community, she helps others through
her writing at Mayasthenia Gravis News and as an ambassador
(02:25):
for the Travis Mills Foundation. Shauna has taken the last
few years to balance her creative pursuits and improving her health,
sharing her story alongside her caregiver and husband Justin in
their blog in Sickness and never Mind. Hi Shawna, thank
(02:45):
you so much for sharing your story with us today.
Speaker 2 (02:48):
Hi Martin, thanks for having me. I'm happy to Let's.
Speaker 1 (02:51):
Begin at the beginning. Can you start by telling us
how did your MG journey begin? When did you know
something was wrong?
Speaker 2 (02:58):
I am a disabled veteran and my health journey actually
started during my deployment to Iraq. Started having seizures while
I was deployed over there, I was exposed to open
burn pits and stuff, and anyway, my health continued to decline.
About a year later, I was medically retired. I had
been experiencing some brain fog and some weird weakness. I
was tripping a little bit, but didn't think anything of it.
(03:21):
About six months after I got out, I started having
some significant weakness where I was actually falling, and the
VA actually gave me a wheelchair. And this is two
thousand and twelve, so I'm twenty eight years old in
a wheelchair, and nobody knows why. But then about four
or five months later, I started having dysphasia and was
(03:43):
choking on my food again. Nobody knows why. There's some
mild swallow issues like food would stay stuck in my
esophagus before it would go down again. Nobody knows why.
Here's another pill to kind of, you know, fix it,
and then just increased weakness and fatigue. It wasn't until
(04:06):
two thousand and sixteen or twenty seventeen when I started
having potosis or I drooping on the right side, and
I saw my ophthalmologist at the VA, and he's the
one that said, I think you've got my senior gravis
and then you know, sent this information to my neurologist.
It wasn't until a year later I was hospitalized for
(04:32):
a week because I lost ten pounds because I couldn't eat.
I was choking and couldn't keep anything down. And then
I finally said, if you don't give me a chest CT,
you know we're going to have issues and I'm going
to file a complaint. We did the CT and I
had hyperplastic thighmus. So I said, okay, you obviously are
not being kept up to date with you know current research,
(04:53):
and I went to patient advocacy got a referral to
an MPT specialist in Maine. So long story took a
hot minute.
Speaker 1 (05:02):
Well, it seems to me that all along the way
that you were obviously advocating for yourself with your healthcare team,
what did you find to be sort of the most
impactful in terms of getting the care that you actually needed.
Speaker 2 (05:14):
Probably just sticking to my guns, not being afraid to
be the squeaky wheel and having to repeat, you know,
this is what's going on, this is what I've tried
over and over and over again, but also being willing
to meet the physicians halfway. So one of the things
I had to do with my neurologist to get her
to agree to a trial was agree to go see
(05:35):
a psychologist who could diagnose whether or not it was
PTSD related or what have you. And I saw two
different psychologists and counselors who both said, it is legitimate.
There is some kind of thing that is physically wrong.
Whether you know what it is or not, you're just
not doing the right tests.
Speaker 1 (05:56):
So, like you said, you had to sort of meet
them with what they were wanted to do to rule
other things out.
Speaker 2 (06:03):
Right, you swallow your pride a little bit, even though
you know it's not you know all in your head.
You got to be willing to meet halfway. And that
was I think the best thing.
Speaker 1 (06:12):
You mentioned your neurologist thinking about timing. If you'd seen
your neurologists earlier on, how do you think that would
have changed your MG journey.
Speaker 2 (06:22):
That's the thing is I was seeing her already for
the seizures because then I was having them on a
regular basis. I've been seizure free for six years now,
so she knew, and she did the EMGs and she
did the blood test. But because the tests were negative,
she was like, well, there's nothing wrong. She just focused
on the seizures because that's what she was looking for,
(06:44):
because that's what she was looking for. And you know,
it was, well, all of these tests that I know
to do are coming back negative. Okay, But here's the
research that I'm presenting to you from the National Institute
of Health. It's from you know, the Neurology Journal. Because
I still had all of those subscriptions because I was
trying to get into med school. So I was showing
(07:04):
you like this isn't you know Google doc here that
I'm giving you. It's legit stuff. You know, they tell
you not to look for a zebra when it should
be a herd of horses in med school, right, But
sometimes you also have to be open to the idea
that you're actually trying to find the unicorn. And I
heard of zebra's and I think that that fits a
(07:28):
lot of us more than the other.
Speaker 1 (07:30):
And to be open to what the patient is saying,
like you said, is happening in your own body? Right,
So as your MG progressed, how have you coped with
the emotional toll? Because over all these years, my goodness,
it just seems like it takes a lot to be
able to cope.
Speaker 2 (07:46):
It does. Part of it is by being open about
my journey and finding ways to help others that it
turns my pain and you know, my frustration and everything
else makes it a little more bearable. So if sharing
my journey through you know, the different platforms that I
share it on helps somebody else, maybe instead of it
(08:10):
taking them seven years, it takes them five, then it
makes it worth it. I have an amazing spouse who
supports me. I get regular counseling because there is a
grief aspect of it. And I acknowledge that I go
through the various stages of grief depending on the level
of disability. And I have, you know, other things to
(08:32):
keep me occupied, to try and help help me feel
like I've got a purpose.
Speaker 1 (08:40):
Absolutely, I mean it seems that you have done that
and then some with the ability to find your purpose
and like you said, to help others. And you mentioned
your husband justin Yeah, can you tell us a little
bit about your relationship with him and how you empower
him as your caregiver through this empty journey.
Speaker 2 (08:58):
Yep. So he's never known me healthy. He's only known
me since I got out of the army, a lot
of open communication. It's very much okay, today's not a
good day or today's a great day. But you know,
we still have to balance how much I do or
how much we do together with you know what's going
(09:19):
to happen on the back end, because flair fear is
is very real for both of us. Because if I
push too hard, then he has more work to do
as my caregiver, and he is my caregiver through a
program at the VA. He does most of the cooking,
he helps me with bathing, and all my appointments. He'll
(09:41):
take me to most of the you know, cleaning around
the house, and I mean he does most everything, but
it's you know, acknowledging the work that he does and
letting him know that I appreciate it, finding ways to
try and take some of that burden off, even if
it means, Okay, there's stuff I really want to do,
(10:01):
but I'm not going to because he needs a break,
and encouraging him to find his own stuff.
Speaker 1 (10:10):
Do you think that his role as your caregiver strengthened
your relationship.
Speaker 2 (10:15):
I think it's forced us to really improve our communication,
which in turn has strengthened our relationship because you know,
there are some really hard topics that we will sit
and it's okay, we need to sit and talk about
this and figure out a way to work around it.
And without that being the necessity, I don't know that
(10:36):
we would have gotten to where we are. But we
can have those hard conversations and nobody gets offended or
it's okay, well I get it. I don't like it,
but you're right, or you know, whatever the case may be.
Speaker 1 (10:51):
And like you said, the idea that this is all
you've known in terms of you know your your health status.
It probably sort of set the ground rules real or Yeah,
you know, when.
Speaker 2 (11:01):
We first got together, we were I could still walk,
and we laid it all out and it's okay, I've
got all these appointments. We don't know what's wrong with me,
but I've got this and this and this, And I
have a son from a previous marriage. He's twenty one now,
but at the time, you know, he didn't live with
me because I couldn't even take care of myself. I
had to move in with my parents when I get
(11:22):
out of the Army. So explaining all of that and
then that kind of really set the tone for our
relationship because it's you know, there's no secrets, there's no punches,
this is what's what, and you know, you set the
expectation and then it's just been building from there. We'll
celebrate ten years this year in August for our wedding anniversary.
(11:45):
That's awesome.
Speaker 1 (11:47):
You mentioned working with the VA. Are there stereotypes that
you think that we have within the army about not
getting help or not seeking care YEP.
Speaker 2 (11:58):
I think those are becoming fewer and fewer. But when
I first started, most days I had appointments. I was
the only female, and I was the youngest by at
least a decade. A lot of women don't seek care
at the VA because they feel like they're not seen
as veterans. And then I think the larger of the
(12:19):
stigmas with the VA is the mental health aspect. Now
I think there's not quite as much of one, and
people are starting to utilize the VA as it was intended.
But there's still a lot of hoops to jump through,
and you know, some of the programs you have to
prove your disability, like with the caregiver program. We have
(12:43):
quarterly assessments to prove that I'm still disabled even though
I am rated at one hundred total and permanent service connected,
which means my disabilities are service connected and there's no
chance of them getting better. You know, they're not going away. Shawna,
you mentioned about having to prove a disability with the VA.
Could you describe what what does that mean for me?
(13:06):
It's justifying how much help I actually get from my husband.
Can I cook for myself? Can I feed myself? Can
I bathe myself? Can I dress myself? So we have
to go through all of those and one of the
things that they haven't taken into account yet is the
variability of organic diseases like my senia gravis. If you
(13:28):
get me the week after I get my infusions, no,
I can dress myself if you get me the week
right before, when you know stuff is run its course. Yeah,
sometimes I need a lot of help.
Speaker 1 (13:40):
You know.
Speaker 2 (13:40):
He has to help me with the bathing and washing
my hair. And it's a really good thing that this
is a podcast and not a video show, because he
doesn't know how to do my makeup and I don't
know that I could hold my arms up enough to
do my makeup today. So it's you know, there's that,
and it's okay, Well, how many days does a flare last?
(14:00):
And what does a flare look like? Justifying the symptom
expression and how frequently it occurs with saying yes, I
do actually need this help in that way.
Speaker 1 (14:11):
You had mentioned that MG is now considered service related.
Can you elaborate a little bit more on that. Has
the VA determined that some aspects of military service are
making vets more vulnerable to conditions like MG.
Speaker 2 (14:24):
So there are a lot of different working theories, especially
for veterans who are deployed overseas and what a lot
of people will recognize as the Gulf War area because
of the heavy metals in the environment, but as well
as what we're exposed to with open burn pits, because
you know, there's medical waste gets burned, and batteries and
(14:46):
plastics and all of the things that you should not
burn gets burned and incinerated because that's the only way
to dispose of trash. There is acknowledgment that because of
these exposures, it opens you up to a whole host
of issues. And we know that a lot of autoimmune
disease can be triggered from chemical exposure, heavy metal exposure,
(15:08):
toxin exposre, you know, all of these different things, so
it just it makes you more susceptible. There are some
autoimmune diseases that are recognized as service connected because of
those exposures. But that's also why there is the caveat
that your symptoms have to show within a year of
service to prove that it's been service connected. It depends
and you know, if you didn't deploy and you were
(15:30):
to develop my senia gravis, it probably wouldn't be considered
service connected because you weren't exposed to the things that
they believe may have triggered, you know, the development of
an autoimmune disease.
Speaker 1 (15:46):
We'll be back with more untold stories Life with may
Asthenia Gravis.
Speaker 2 (15:50):
After a quick.
Speaker 1 (15:51):
Break as a global immunology company committed to improving the
lives of people living with severe autoimmune diseases, Ergenics is
dedicated to partnering with advocacy organizations, including the Conquer Myasthenia
Gravis Association or conquer MG, in support of the MG community.
Speaker 2 (16:13):
Conquer MG has been.
Speaker 1 (16:14):
Offering help and hope to individuals with myasthenia Gravis in Illinois,
Northwest Indiana, and southeast Wisconsin for more than fifty years.
Their mission is to facilitate the timely diagnosis and optimal
care of individuals affected by MG and to improve their
lives through patient services, public awareness, medical research, professional education, advocacy,
(16:38):
and patient care programs. For more information about conquer MG,
visit Wwwmyasthenia Gravis dot org. And now back to Untold
Stories Life with Myasthenia Gravis. Seanna, you have a service
(17:01):
dog named Andy, and how did you get him?
Speaker 2 (17:05):
Was?
Speaker 1 (17:05):
Did you were able to get him through the VA?
Speaker 2 (17:08):
No? Actually, I got Andy through an organization called Canines
on the front Line in Maine. They match rescue dogs
with disabled veterans with PTSD and then put us through
a training program together to train him to be a
service dog. So he helps me with my PTSD as well.
(17:32):
And I told them that I knew would need a
large dog because MG affects my mobility. So they found Andy,
who's a great Dane and Lab mix and we cross
trained him so that way he would be my service
dog for both the PTSD and the mice inior Gravis SHAWNA.
How does Andy help you day to day? So I
have ropes tied to the doors here in the house,
(17:56):
and he helps me close the doors and he will
open them by pushing them open. He knows how to brace,
so that way, if I need help getting up from
a seated position on the couch, I can use him
for stability. He picks things up off the floor for
me so I don't lose my balance, and you know,
topple head over tea kettle. He can close the dishwasher door,
(18:17):
the silverware drawers, the cabinets in the kitchen. He will
sit there and he'll help brace if I need help,
like getting out of the shower. That's one of the
reasons he's so big is to have a mobility service dog.
They have to be at least fifty percent of your
weight so that way you don't hurt them when you
use them for the mobility work. So he's a big
(18:37):
boy at one hundred and ten pounds and okay, yes,
thank you Andy. It's like you told me to get stuff.
He's like, here, you drop this. You need this, mom,
you need your cereal for the morning. And then he just,
you know, looks at you with these golden brown eyes
(18:58):
and says, the world's going to be okay, mama. It's
hard not to feel better when he looks at you
like that.
Speaker 1 (19:05):
Yeah.
Speaker 2 (19:05):
So he's doing many jobs it once. It's awesome.
Speaker 1 (19:11):
What advice would you have for other female veterans who
may be dealing with the VA in regards to a
rare disorder diagnosis, like, MG.
Speaker 2 (19:20):
You know what's going on with your body, don't let
anybody tell you that you don't. And being able to
stick to your guns, but not being hysterical or pushy,
being accepting that you might have a little bit of
a hurdle to get through to get to where you
need to be, but not to give up because it's again,
(19:44):
they don't know what they don't know. And if the
docs that you are seeing haven't treated a female vet,
they're not going to know what services you may or
may not need, or what health issues are common amongst
female veterans. When their primary demographic has been sixty seventy
eighty year old men, it may not be you. They
just have no idea what you need and it might
(20:05):
take some time for them to figure that out. My
primary care she's like, Okay, I have no idea, so
we're going to get you to the people that do.
And I have more respect for her because she said,
I don't know, but we're going to find out. Awesome.
Like that doesn't make me respect you any less as
my physician. If anything, it puts you, you know, higher
(20:27):
up on my pedestal of where you are as my doc.
Speaker 1 (20:30):
If there was something that you could tell healthcare providers
to help patients with MG feel heard or get the
care that they needed sooner, what would you tell them to.
Speaker 2 (20:39):
Listen and look at the whole person, try to help
them figure out how to explain what they're actually feeling
like because I know, like with the shortness of breath.
That's you know, a big one because it's well, I
can't get a good breath. Well, but what does that
feel like? You know, because they automatically always go to asthma. Well,
does it feel like your chestice site? No, it just
feels like I've got to catch and I can't get
(21:00):
a good breath. Finding better ways to explain or to
help your patients explain how they're feeling, because a lot
of times they just don't know, like, well, I'm tired, Well,
but what kind of tired? Because you know, that physical
feeling of being tired when you've exerted yourself too much
is much different than that feeling of tired because your
(21:22):
muscles just aren't working, you know, because of MG. Or
what does it look like with you know, the double
vision if you've get double vision? You know, okay, well
do you get double vision? Well, yes, but it looks
like this, or you have more options for people to
help them help you. There's a lot of talking past
(21:45):
each other, and I think that you know, the patient
gets frustrated because the doctor's not understanding, and then the
doctor assumes that they know what's going on, and then
it just creates this back and forth and frustration because
they're talking past each other and not actually hearing what
the other is saying.
Speaker 1 (22:03):
You mentioned earlier about how giving back to others that
are going through their MG journey is something that has
given you some strength through outlets with your blog and podcast.
What have you learned about the experiences of other people's
journey to MG diagnosis?
Speaker 2 (22:21):
That the average diagnosis, even in the private sector, is
seven to ten years, especially for women, which is unfortunate.
I've also learned that, even though the VA has its
own set of red tape and frustrations, that I'm exceptionally
lucky because I do have the VA care. I get
(22:44):
IVG every three weeks. We moved out here to Wisconsin
a year ago, and my care team out here is phenomenal.
So my neurologist signs off on it and I get
my meds and that's it, and I don't have to
worry about it. And I know that a lot of
my friends in the community it's a struggle to try
and get their meds approved. It's obnoxious, Shanna.
Speaker 1 (23:07):
When you think about people who are listening to this
podcast who are living with MG, what advice do you
have to give them.
Speaker 2 (23:15):
This may or may not come across the way that
I'm hoping it does. Okay, but I am very big
on not having a victim mentality. And what I mean
by that is, yes, MG really sucks, especially when you
are struggling to find that diagnosis. But it doesn't have
(23:35):
to define your limitations. It's you can have your bad
days and you can do the woe as me and Okay,
this really sucks, and you have your pretty party for
a day, but you don't sit there and do the well,
you know, nobody likes me, nobody understands, nobody gets it.
You know, I don't have any you know whatever all
(23:57):
of these negative things are, because there's also a lot
of really good positives if you know where to look for.
Try to live and not just survive. And that's the
biggest one is I just see too many people just
sitting and wallowing in that pity party, which doesn't help
(24:17):
because stress and all those negative emotions makes the MG worse.
So you're just putting yourself in a spiral, and that
doesn't do anybody any good.
Speaker 1 (24:26):
I saw a quote in your blog that I want
to read back to you. Okay, sometimes we have to
get out of our own way to live our best lives.
Speaker 2 (24:36):
Yep, it's true. I owned a print shop in Maine
before we moved out here, and I had to close
it because I had my first myasthantic crisis I never recovered.
Came out here about a year ago and based on
what I can do with you know, most of my
good days with MG, I relaunched my web design business.
(24:59):
But I have boundary set so that way I don't
go back to where I was. So just because you
can't do what you used to do doesn't mean that
you still can't do other stuff.
Speaker 1 (25:12):
And it's also about living in the past right your
past self and how you viewed yourself, and you can't
keep holding that image. You're different. Things have changed, and.
Speaker 2 (25:21):
When you get out of your own way and focus
on what you can do, you never know you know
what that path is going to look like.
Speaker 1 (25:29):
Is there anything you hope to tell the MG community
as a whole.
Speaker 2 (25:34):
There's things that we can do for ourselves. Whether we're
getting the care that we need or deserve, there's other
things that we can be doing for ourselves so that
we can live our best lives within our capabilities. You
just have to be willing to look on that side
of the coin and not, you know, kind of sit
(25:55):
there and only see the negative. Once you get a
diagnosis us with a rare disease like MG, it's the
you that you are now is what you need to
focus on instead of the you that you were before,
because focusing on before is just gonna keep you in
a depressive state and that's just not good for anybody.
Speaker 1 (26:18):
So well said Shauna with that, I appreciate your time.
Thank you so much for sharing with us.
Speaker 2 (26:24):
Thank you.
Speaker 1 (26:29):
It was really great being able to listen to Shauna
and hear about her experiences and to meet her dog Andy.
Speaker 2 (26:36):
But I'll say it's all.
Speaker 1 (26:37):
Too common to hear about the barriers to care for
people living with MG. So whether making your voice heard
or helping advocate for someone you love, honest conversations with
your healthcare provider are key to finding the right treatment
plan for you and feeling empowered along the way.
Speaker 2 (26:53):
Don't forget to.
Speaker 1 (26:54):
Join us every other week to hear more powerful stories
of life with MG. Untold stories. Life with Mayasthenia Gravis
was produced by iHeartRadio in partnership with our gen X
and Closer Look and hosted by me Martine Hackett. Our
executive producer is Mali Soosha, our EP of Post Production
is Matt Stillo, and our producer is Sierra Kaiser. This
(27:17):
episode was written and produced by Tyree Rush
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