July 19, 2023 • 29 mins
Myasthenia gravis, or MG, takes a toll on the lives of those living with the condition, but it also affects their loved ones. As Jessica and her husband Jonathan were preparing to welcome their second child into the world, they were not expecting to receive Jessica’s MG diagnosis. With this new element added to their lives, they have had to learn how to navigate their evolving family roles, nurture their marriage, and advocate for one another and themselves. In this episode, Jessica and Jonathan share how they have established a new balance in their life together.
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Speaker 1 (00:03):
Hello everyone, and welcome back to Untold Stories Life with
Mayasthenia Gravis, a podcast from iHeartRadio in partnership with our
gen X. I'm your host, Martine Hackett. I'm an Associate
professor and Director of Public Health Programs at Hofstra University,
and as a researcher, professor, and public health expert, I've
spent my career studying the complex realities of healthcare disparities
(00:25):
and the diverse barriers people face. In this podcast, I'm
speaking with real people living with mayasthenia Gravis, commonly known
as MG. Every person with MG has a unique story
to tell. By uncovering real life with MG, we will
expand the conversation around this condition and its disproportionate effect
on underserved communities. In each episode, we'll explore how each
(00:49):
MG journey is unique and powerful in its own way.
We'll also share tips on self advocacy and discuss the
role community and caregivers play in the lives of people
living with MG with the daunting road ahead after diagnosis.
Learning how to self advocate can make a big difference
when navigating life with MG, whether exploring treatment options or
(01:09):
understanding how life will change after diagnosis. The MG journey
can involve a lot of adjustment and support along the way.
Our guest today, Jessica, is a digital marketing specialist who
is diagnosed with MG at age twenty seven when she
was pregnant with her second child. Managing the hurdles and
fears of these major life events, Jessica had to self
(01:32):
advocate for her needs while navigating how her diagnosis would
affect her life and her pregnancy. Thankfully, she found a
supportive community through social media that helped her and her
family find a path forward in life with MG. Jessica's
diagnosis caused her to slow down, but it also inspired
her to become more firmly rooted in her identity and community. Today,
(01:54):
she is joined by her husband, Jonathan, who has been
by her side every step of the way in adjusting
to their new reality, learning to be an active caregiver
and advocate. Jonathan experiences life with MG from his own
unique perspective and whether you are advocating for yourself or
a loved one, Jonathan and Jessica are a testament to
the importance of building a strong foundation so that you
(02:16):
can navigate the challenges that come along the MG journey.
Hi Jessica and Jonathan. I really appreciate you too giving
us your time today to talk about this topic. Jessica,
you've had a very unique diagnosis story because you found
out you had MG during your pregnancy. Can you walk
(02:37):
us through that experience? What was going on in your
mind at that time?
Speaker 2 (02:41):
Yeah, it was very overwhelming. We were really excited, and
then at the same time I was experiencing all these symptoms,
and as the symptoms were progressing, it was very difficult
to maintain my hope and joy that even though we
were going to enter into a season of having two
kiddos and all the joy of that, it was at
(03:02):
the same time very challenging to see how we would
manage and.
Speaker 1 (03:06):
What were some of the specific symptoms you were experiencing
before you got your diagnosis.
Speaker 2 (03:11):
Yeah, So it started with double vision, and I think
stayed with double vision for about a month or two,
and then progressed to weakness and started with my neck
so I couldn't hold my neck up very well, and
doing simple tasks like loading the dishwasher, I couldn't lift
a plate onto the shelf, brushing my teeth, things like that.
(03:33):
Suddenly became very difficult.
Speaker 1 (03:35):
And could you talk a little bit more about what
were some of the things that you had to encounter
to get to the diagnosis.
Speaker 2 (03:41):
Yeah. So it first started because with the double vision.
So I went to an optometrist and I actually went
to several optometrists that we couldn't figure out my prescription.
Every prescription they gave my vision was still blurry. So
eventually I went to one optometrist to said, why don't
you go see an ophthalmologist. And when I went there,
(04:05):
they put an ice pack on my eye. I think
it's some sort of test for MG. And from there
they recommended me to go to a neurologist. And with
the neurologist they did blood tests and at first actually
it came out negative with MG because I was musk positive,
and so they had to do additional tests to find
(04:26):
out that I had musk MG. It was for me,
I'm grateful was relatively quick. It happened in the span
of maybe a month to truly get to the diagnosis,
and so from there I chose a neurologist who was
more familiar with the musk MG.
Speaker 1 (04:45):
Jonathan, what went through your mind when Jessica started to
be affected? By these symptoms.
Speaker 3 (04:51):
I think what Jessica talked about, you know, the feeling
of both celebration of you know, we're having a daughter,
also just fear. It was this slow sort of realization
our lives will never be the same.
Speaker 1 (05:04):
And what did showing up for her look like for
you then? And how did that evolve as she was
going through this diagnosis.
Speaker 3 (05:11):
It started with a feeling like, okay, we we need
to change things. You know, how can I support her
just in terms of logistics, emotionally and all these other things.
And it was sort of overwhelming at first. But I
think one thing that we realized was when people understand
that there's something going on that's more than just sort
of the normal hey, how are you doing, it becomes
(05:33):
this opportunity for them to sort of say like, hey,
let me help you. Guys. At first, we thought, you know,
this is something that we need to handle, we need
to figure out together. And what we didn't realize was
there's so many more people in that together who started
to help and offer that support that I think was
vital for us to get to where she is today.
It's definitely uncomfortable, I think, especially because jess and I
(05:55):
are asient. So that figures a lot into the context
of like, how do we ask for help help without
actually revealing that we need help? Right, And so there's
a complicated sort of thing in vulnerability, I think in
our culture as well.
Speaker 1 (06:10):
And speaking being vulnerable, Jessica being pregnant at that time,
which is obviously stressful on its own. You mentioned some
of the symptoms that you had about the muscle weakness
and the double vision. Did any of those affect your
pregnancy or impact your pregnancy?
Speaker 2 (06:25):
Yeah? I think when we first planned being pregnant, and
I had envision like this beautiful, like summer pregnancy, like
going out wearing dresses and just enjoying this because we
only wanted two children and so enjoying this lost pregnancy
and really saving every moment. And when I was diagnosed
(06:46):
with MG, it just completely turned that on its head.
And I spent most days just in bed, barely getting
up to eat. And the pandemic hit during that time
as well, and so was different than how I envisioned it.
I think what was surprising to me was when I
was admitted to the ICU, they only prioritized me, and
(07:11):
so I was like, oh, but I want to like
prioritize my baby, but they just wanted to make sure
that I was safe and to save me, And so
I think that was difficult for me to process as well,
that like, in order to preserve my help that might
mean I could lose my baby, And so navigating those
things as well was really difficult. Wow.
Speaker 1 (07:30):
And I'm sure obviously this was not usual for your
physicians either, right, And so for them, did you feel
that they had a firm grasp on how to handle
your condition?
Speaker 2 (07:41):
I think there was a lot of me like preparing
myself because I wasn't sure how prepared they were for
my case, because like MG is so rare that I
don't think many of them had encountered the situation before.
I mean, I could sense like some excitement in like, oh,
this is new and different, like I want to learn
(08:02):
and be able to help you. But at the same time,
there was like fear in my mind because I'm like,
do you know how to help me? Do you know
what drugs to avoid? And so I definitely wanted to
make sure that I did as much research as I could.
In the ends, we did come across some issues, and
I think now I know how to be better prepared
(08:22):
for the future.
Speaker 1 (08:24):
Well, it sounds like just navigating that process of pregnancy
and this new diagnosis that informed your self advocacy. And
so what was that process of like you just mentioned about,
you know, doing your own research and sort of finding
your own voice in working with the medical professionals and
particularly postpartum.
Speaker 2 (08:43):
Yeah, it started from the beginning of my journey of
just finding out about this diagnosis, Like I rite away
went to look for all the resources that I could
my asthenia dot org and try to plug into as
many support groups as I could, and through that I
met someone who actually had musk MG as well, and
(09:04):
that was very helpful. But my senior dot org has
a list of all the cautionary drugs and a lot
of different resources. So when I went to the dentist,
I printed out the whole sheet for them, and I
think that's something that I'll continue to do, is having
that list on the back of my mind. I think
in terms of like the pregnancy specifically, when I gave birth,
(09:27):
actually they ended up giving me a drug that was
contraunicated to MG, and the last minute it was an
emergency c section, and it was already very traumatic and
at the end, I felt my throat closing up and
I was like, what is going on? And later I
found out I had to be admitted to the ICU
again because I went into a flare and I found
(09:48):
out that they had given me one of those drugs
that was contraindicated. And so postpartum learning how to advocate
for myself and calling the hospital and negotiating with that
bill that became very high because of the ICU visit.
It was definitely a learning experience of like, I need
(10:09):
to be able to stand up for myself. I need
to be able to be educated and know what I'm
getting into.
Speaker 1 (10:16):
Jessica, I want to go back to what you talked
about an incident where you said you had to be
cautious and advocate for yourself and your baby in terms
of the treatments that were given to you. What happened
in that situation and how did you handle it when
this was happening.
Speaker 2 (10:31):
Yeah, I think with pregnancy, there's not too many options
that you have, and so I really wanted to protect
my baby and make sure that we had I had
a safe pregnancy and healthy pregnancy, and I really prioritized that.
It was difficult because of course there are the more
aggressive drugs that will help me feel better. I think
(10:53):
it almost felt like choosing between like less or evil,
you know, having to figure out which strugs to try,
what to go with specifically and icee you at that time,
because I couldn't breathe well. I was going into respiratory failure,
and so I really had no choice and no energy
(11:13):
to kind of fight, and so I just tried to
make my wishes known as much as I could, and
they tried to accommodate me. But in the end everything
worked out. So I'm grateful, and I think for me
it felt empowering because I was taking my health into
my own hands. I was looking for my own options.
I was trying to make the best decision for myself.
Speaker 1 (11:35):
Jonathan, let me ask you, what were some of your
biggest fears as you were moving through this journey.
Speaker 3 (11:40):
Yeah, we just had our son and now we're having
a daughter. When you first become a parent, it's this
crazy thing where I think the dad is still figuring out,
you know, how do we be useful when the mom
is like Superwoman. There's only so much that I can
understand about what Jess is going through. I knew she
couldn't see well, she couldn't drive, So the things that
(12:02):
I could see in front of me were like, Okay,
how do I make sure that we get our kids
to where they need to go? How do I make
sure that I can help her get as much rest
as she needs to reduce as much stress as possible.
But I think hearing jess talk about it, coming out
of this, jess has been somebody who's just been much
more like, Okay, this is what we need as a family,
(12:23):
this is what I need as a person, And it's
been a lot healthier just in terms of our relationship well.
Speaker 1 (12:30):
And also it seems like you stepped up too in
terms of seeing like where are the places that I
can be useful here?
Speaker 3 (12:37):
Yeah? Absolutely.
Speaker 1 (12:39):
Also, Jessica, you mentioned in one of your blog posts
about something of a role reversal that you had in
your marriage and having to adjust your own expectations. Yeah,
I'm wondering how your experience within your marriage impacts your
outlook on how you deal with MG and the other
aspects of your life. Can you talk a little bit
about that.
Speaker 2 (12:59):
Yeah, I think before MG, I was a very controlling,
perfectionist type of person and having been diagnosed with MG,
I really had to break down all of my expectations
and the ways that I wanted things done and realized that,
you know, as long as we're alive, the kids are alive,
(13:21):
everything's okay. Like I don't have to have a neat
home all the time. I don't have to have everything
planned and scheduled perfectly, And that actually gives me a
lot of calm and peace knowing that you know, everything's
going to be okay. I don't need to have everything
perfect all the time. And I think I was able
to really see John in a new light too, seeing
(13:44):
how hard he was trying to really take care of
me and how well he was doing with that, And
that's really changed our marriage and the way that we
take care of our kids and parent now. I think
it's much more balance and less stress on my end,
knowing that all of those expectations they really were a
barrier I think to our connection, and so being more
(14:05):
grateful has helped in our relationship and just appreciating one
another for what we're doing more.
Speaker 1 (14:12):
That's wonderful.
Speaker 2 (14:12):
John.
Speaker 1 (14:13):
I'd love to hear your take on this. How do
you feel that your perspective has changed with your marriage.
Speaker 3 (14:19):
So I've always seen sort of Jess as a wonder
woman who's able to do like so much, just so
much determination, and to see sort of MG, it's almost
like you become a shell of yourself, especially during the
flare ups, and that was a big shock of like, okay, well,
somebody who has really been supporting our entire family. Now
a lot of that responsibility is like I need to
(14:41):
take care of her and I need to make sure
that as much as I can to alleviate her stress,
which I didn't do perfectly. But I think that that's
something where I think I've changed as well, just in
terms of, Okay, I need to become more aware of,
like hear the things that Jess is can certained about,
here's what really stresses her out. What can I do
(15:04):
to clean the house, you know? What can I do
to make sure the kids don't bother her when she
needs to rest. So I think there was a period
of about a year where I slept with the kids
just to make sure that if they had anything that
they could come to me first and wake me up,
to make sure that Jess had the recovery period that
was necessary. I think it changed me as a person,
(15:24):
and I think it showed Jess, you know, things can
be okay even if the worst case scenario in her
mind happens. We're still alive. Everything's still okay by the
end of the day. I think that that created the
space I think for us to have the gratitude of like, Okay,
we can be with our kids. We can have crazy
things happen that we think would have destroyed us, right,
(15:45):
but actually it's just things that continue to build the
relationship and keep going.
Speaker 1 (15:55):
We'll be back with more untold stories. Life with Mayasthenia
Gravis after a quick break as a global immunology company
committed to improving the lives of people suffering from severe
autoimmune diseases, our Genics is dedicated to partnering with advocacy
organization including the Miasthenia Gravis Foundation of Michigan or MGMI
(16:19):
and the Maasthenia Gravist Association of Western Pennsylvania or MGA
WPA in support of the MG community. MGMI is committed
to finding a cure for MG, improving treatment options, and
providing information and support to people with MG across the
state of Michigan through research, education, community programs, and advocacy.
(16:41):
To learn more about the MGMI, visit www dot MGMI
dot org. The MGA WPA strives to address the medical, social,
and emotional needs of all persons affected by MG throughout
Western Pennsylvania and provides educational information to those living with
this rare disorder as well as their families, the medical community,
(17:03):
and the general public. The MGA WPA is offering patients
and their families an opportunity to share their stories through
the my MG Story program. If you'd like to participate,
visit www dot MGA WPA dot org slash community and
(17:27):
now back to Untold Stories Life with Mayasthenia Gravis, Jonathan,
what are you doing to take care of yourself as
you are going through all.
Speaker 3 (17:39):
Of those It's interesting We started to delve really into
self exploration as well, because we found that we were
changing as people, and so we wanted to understand The
nagram was a really valuable tool in understanding. So there's
basically these nine different personality types, and it's a way
of understanding your personality, how you react to certain people,
(18:00):
how you react to certain types, and then also how
you grow in your type. So one thing that Jess
realized was that she thought she was a Nagram too,
but she was actually an Aagram three. So a Nagram
two is somebody who serves. A Nagram three is somebody
who achieves, which is about, Okay, I want to get
these goals. I want to present myself, you know. And
so what we realized was it seemed like, Okay, she
(18:23):
wanted to serve and like she found joy in that.
It was like, actually, that's not as fulfilling as being
a role model being inspiring to other people. So my
relationship to her changed Before it was like, Okay, how
can I facilitate her serving people to how can I
facilitate her to developing a platform for inspiring for meeting people.
(18:44):
But that totally set things into place of like, Okay,
these are things that she needs to have in order
to grow and to thrive, as you know, somebody who achieves.
And for me, I'm a seven, which is an enthusiast.
So I just like to experience things and I like
to have fun, and so I feel like from me,
I know how to take care of myself to a fault.
(19:05):
And I think it was really about stepping outside of
that bubble and knowing that Okay, there's actually deeper things
than just do I feel good? Do I feel peaceful
in this moment? Do I feel satisfied in this moment?
It's about how is my family feeling, how is jess feeling?
How do I make sure that I'm there for her,
because ultimately that's what creates that kind of happiness for
(19:26):
our entire family for the long term.
Speaker 1 (19:28):
Jessica, you're still also too, an ambitious at working mother, right.
How were you able to reclaim your professional life while
dealing with MG and raising your kids.
Speaker 2 (19:39):
Yeah, I think that's still a journey that I'm on.
I'm really grateful because during the time when I was
coming out of a lot of the symptoms and was
doing better, I reached out and got a remote operations
kind of role at a nonprofit and so that was
about twenty hours a week. I worked from home. I
(19:59):
did it to drive, and also it was flexible. I've
been in that role for two years and actually at
the end of last year, I started a digital marketing
boot camp, and so I think that was one step
into doing something different for myself because I had lost
like my mid twenties. I feel like where a lot
of my friends were building up their careers. I feel
(20:22):
like I wanted to reclaim that, and so it's been
a journey and finding success along the way has helped
me feel like that reclaiming of purpose and passion and
so yeah, I think I'm just going to continue doing
my best and we'll see where it leads.
Speaker 1 (20:41):
Yeah, And it sounds like it's just also your sense
of discovering things that you again might not have thought
that you would were going to be end up doing,
which obviously is an important piece here as you're kind
of navigating this in addition to navigating life as a
young mother. A mother of young children, how do you
explain diagnosis to them?
Speaker 2 (21:01):
Yeah, with my son, I think he does remember, And
with my daughter, I'm not sure that she remembers because
she was so young at the time when I was
really really sick. But I think when I do explain
when I'm tired or things like that, I just I
tell them, like, mommy's really tired, I really need to rest.
(21:23):
There was a time before when Mommy was really sick.
Do you remember that? And trying to remind them that
it is like a part of my journey. It is
still a part of something that I'm fighting, and so
I think like being able to explain to them in
ways that they do understand right now and later on
maybe I can give them the bigger picture.
Speaker 1 (21:44):
That's so important just with kids to be able to
realize that this is something that they're part of as
a family unit. And that sounds like a really great
approach that you're taking to me.
Speaker 2 (21:54):
Thank you.
Speaker 1 (21:55):
When you started to share about your MG journey, you
mentioned that you started doing some writing and connecting with
others when you first got diagnosed on social media. How
did you find that community and how did that change
your outlook about your MG diagnosis.
Speaker 2 (22:13):
Yeah, when I first was doing all the research and
finding the support groups, there was actually a support group
that was really close to my work, and so I
went after work, I walked there and was able to
meet actually someone around my age, also a woman, and
so we connected right away, and she had generalized MG
(22:35):
and she was very active in the MG community and
she would organize like the MG Walk in San Francisco,
and so I think being connected with her really helped me.
And we ended up meeting and grabbing lunch one day,
and I just remember like laying on my couch and
she totally got it. My eyes were weak, I had
(22:57):
no energy after our lunch, and I just laid there
and she just sat with me. And I think having
those experiences with people who really get it is just
so meaningful because it can feel like so lonely when
no one immediate too can truly understand, and so finding
those people who you can really connect with, I think
(23:18):
is so important. And so that was one way, finding
her through the support group and then through social media.
I was very vocal about my MG diagnosis and journey,
and so through that finding other people through like the
hashtag tagging my posts and then looking through the hashtag
myceeno gravis itself finding other advocates. I think it was
(23:40):
really helpful, and we were able to DM each other
and I could ask questions, and so finding support groups
also on Facebook, there's a lot of Facebook groups that
are specific to the different types of MG as well,
like I joined at Musk group. Reading through all of
those posts and connecting with people online, I think is
(24:01):
a great way if you are unable to get outside,
to still have that community.
Speaker 1 (24:07):
Yeah, I mean, my goodness, how else you know, if
you think about it, what did we do before that
you know, to be able to find people with this
rare disease and not only to just connect, but it
actually is providing some very tangible support for you. Yeah.
Do you feel that this also helped you be a
better advocate?
Speaker 2 (24:26):
For sure? I think seeing what other people were sharing
and the questions people had and the different answers that
people had as well, and their different resources people would
share was always really helpful. With the support group, they
go through different topics with different neurologists, and so I
think that was always cool to see like what new
(24:47):
research was coming out and what people were interested in
in the different trials that were happening.
Speaker 1 (24:54):
And even more specifically, were you able to connect with
other Asian American people living with MG?
Speaker 2 (25:00):
Yeah? So actually the girl that I had met at
that support group was Asian American as well, and so
it just felt like this really divine thing where we
just connected on so many levels. And I'm really grateful
having that community and vulnerability to reach out and have
communities important.
Speaker 1 (25:17):
Absolutely, and for both of you having learned so much
throughout j just because MG journey. How is your view
and approach to advocacy change since that initial diagnosis?
Speaker 2 (25:29):
Yeah, I think knowing, like with everything that I went through,
I definitely recommend, like people who are newly diagnosed to
be educated, to spend time during research to find all
those resources. And there are so many out there to
be prepared for different appointments that you have, and yeah,
know how to advocate for not only like your health
(25:52):
in terms of like your physical health, but also like
your mental health. I feel like everything is so intertwined,
like physical, mental, spiritual, they all affect one another. I
could feel it in my body, like especially when I
was really sick, how stress could trigger a flare. And
so knowing like your boundaries, yeah, I think is really important.
Speaker 3 (26:13):
And I feel like as sort of the spouse who
hasn't had the illness but is trying to understand. I
think a lot of it is about when people don't
understand much about an illness. I think there's a lot
of space that you need to create around. I think
that creating that buffer of like, Okay, Jess has social needs,
let's figure out how to fulfill them to hope or
(26:33):
feel like part of a community while also not exposing
too much, you know, it just allows her to control
that space and create that buffer for her.
Speaker 1 (26:43):
So if you guys could go back to when you
were first diagnosed, Jessica, what would you say to yourself.
Speaker 2 (26:50):
I think I was so overwhelmed and fearful at the
time that even just something like everything will be okay.
I know it sounds generic, but that this is not
like the end, that there is hope, and I think
to lean in to the support and community that you
(27:10):
have around you, because I was so afraid of so
many things that you know, it's difficult for me to
really let go and not completely stress myself out over
every single question that I had. And so I think
everything will be okay. Lean in to your support.
Speaker 1 (27:31):
Jonathan, anything you would say to yourself if you could
go back.
Speaker 3 (27:36):
Yeah, I think what jess is saying, Everything's going to
be okay. There's just so much uncertainty about something that
is so rare. But you know, there's a lot of
really great research going on, especially with the Internet. There's
a lot of people out there who are struggling the
same thing, and the world is a lot friendlier than
I think we first started out with.
Speaker 1 (27:58):
Wonderful. So really appreciate Jessica and John your time and
just how honest and forthright you were in this conversation,
and I know that the information that you share today
will be helpful and continues to be helpful to people
with MG. Thank you, Thank you, absolutely, thank you. I
(28:21):
so appreciate Jessica and John for their candor and openness
during our conversation. For many women, learning to self advocate
can be a very daunting and hard task, but navigating
her MG journey and empowering her husband along the way,
Jessica's story and strength are truly inspiring. John has such
a valued and unique perspective as someone who is living
(28:42):
with MG by way of loving and caring for his wife.
It's so important to remember that these rare conditions are
also impacting the lives of family and friends who love
those living with them. The way that John has learned
to take on more responsibilities and step up for his
family is reflect of the sort of community we all
hope to build with our lives. They are truly a
(29:04):
powerful couple, as shown through their resolved to strengthen their
marriage as it was tested along the way. Don't forget
to 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 GenX
and Closer Look, and hosted by me Martine Hackett. Our
(29:26):
executive producer is Mali Sosha, our EP of Post Production
is Matt Stillo, and our producer is Sierra Kaiser. This
episode was written and produced by Tyree Rush
Hello everyone, and welcome back to Untold Stories Life with
Mayasthenia Gravis, a podcast from iHeartRadio in partnership with our
gen X. I'm your host, Martine Hackett. I'm an Associate
professor and Director of Public Health Programs at Hofstra University,
and as a researcher, professor, and public health expert, I've
spent my career studying the complex realities of healthcare disparities
(00:25):
and the diverse barriers people face. In this podcast, I'm
speaking with real people living with mayasthenia Gravis, commonly known
as MG. Every person with MG has a unique story
to tell. By uncovering real life with MG, we will
expand the conversation around this condition and its disproportionate effect
on underserved communities. In each episode, we'll explore how each
(00:49):
MG journey is unique and powerful in its own way.
We'll also share tips on self advocacy and discuss the
role community and caregivers play in the lives of people
living with MG with the daunting road ahead after diagnosis.
Learning how to self advocate can make a big difference
when navigating life with MG, whether exploring treatment options or
(01:09):
understanding how life will change after diagnosis. The MG journey
can involve a lot of adjustment and support along the way.
Our guest today, Jessica, is a digital marketing specialist who
is diagnosed with MG at age twenty seven when she
was pregnant with her second child. Managing the hurdles and
fears of these major life events, Jessica had to self
(01:32):
advocate for her needs while navigating how her diagnosis would
affect her life and her pregnancy. Thankfully, she found a
supportive community through social media that helped her and her
family find a path forward in life with MG. Jessica's
diagnosis caused her to slow down, but it also inspired
her to become more firmly rooted in her identity and community. Today,
(01:54):
she is joined by her husband, Jonathan, who has been
by her side every step of the way in adjusting
to their new reality, learning to be an active caregiver
and advocate. Jonathan experiences life with MG from his own
unique perspective and whether you are advocating for yourself or
a loved one, Jonathan and Jessica are a testament to
the importance of building a strong foundation so that you
(02:16):
can navigate the challenges that come along the MG journey.
Hi Jessica and Jonathan. I really appreciate you too giving
us your time today to talk about this topic. Jessica,
you've had a very unique diagnosis story because you found
out you had MG during your pregnancy. Can you walk
(02:37):
us through that experience? What was going on in your
mind at that time?
Speaker 2 (02:41):
Yeah, it was very overwhelming. We were really excited, and
then at the same time I was experiencing all these symptoms,
and as the symptoms were progressing, it was very difficult
to maintain my hope and joy that even though we
were going to enter into a season of having two
kiddos and all the joy of that, it was at
(03:02):
the same time very challenging to see how we would
manage and.
Speaker 1 (03:06):
What were some of the specific symptoms you were experiencing
before you got your diagnosis.
Speaker 2 (03:11):
Yeah, So it started with double vision, and I think
stayed with double vision for about a month or two,
and then progressed to weakness and started with my neck
so I couldn't hold my neck up very well, and
doing simple tasks like loading the dishwasher, I couldn't lift
a plate onto the shelf, brushing my teeth, things like that.
(03:33):
Suddenly became very difficult.
Speaker 1 (03:35):
And could you talk a little bit more about what
were some of the things that you had to encounter
to get to the diagnosis.
Speaker 2 (03:41):
Yeah. So it first started because with the double vision.
So I went to an optometrist and I actually went
to several optometrists that we couldn't figure out my prescription.
Every prescription they gave my vision was still blurry. So
eventually I went to one optometrist to said, why don't
you go see an ophthalmologist. And when I went there,
(04:05):
they put an ice pack on my eye. I think
it's some sort of test for MG. And from there
they recommended me to go to a neurologist. And with
the neurologist they did blood tests and at first actually
it came out negative with MG because I was musk positive,
and so they had to do additional tests to find
(04:26):
out that I had musk MG. It was for me,
I'm grateful was relatively quick. It happened in the span
of maybe a month to truly get to the diagnosis,
and so from there I chose a neurologist who was
more familiar with the musk MG.
Speaker 1 (04:45):
Jonathan, what went through your mind when Jessica started to
be affected? By these symptoms.
Speaker 3 (04:51):
I think what Jessica talked about, you know, the feeling
of both celebration of you know, we're having a daughter,
also just fear. It was this slow sort of realization
our lives will never be the same.
Speaker 1 (05:04):
And what did showing up for her look like for
you then? And how did that evolve as she was
going through this diagnosis.
Speaker 3 (05:11):
It started with a feeling like, okay, we we need
to change things. You know, how can I support her
just in terms of logistics, emotionally and all these other things.
And it was sort of overwhelming at first. But I
think one thing that we realized was when people understand
that there's something going on that's more than just sort
of the normal hey, how are you doing, it becomes
(05:33):
this opportunity for them to sort of say like, hey,
let me help you. Guys. At first, we thought, you know,
this is something that we need to handle, we need
to figure out together. And what we didn't realize was
there's so many more people in that together who started
to help and offer that support that I think was
vital for us to get to where she is today.
It's definitely uncomfortable, I think, especially because jess and I
(05:55):
are asient. So that figures a lot into the context
of like, how do we ask for help help without
actually revealing that we need help? Right, And so there's
a complicated sort of thing in vulnerability, I think in
our culture as well.
Speaker 1 (06:10):
And speaking being vulnerable, Jessica being pregnant at that time,
which is obviously stressful on its own. You mentioned some
of the symptoms that you had about the muscle weakness
and the double vision. Did any of those affect your
pregnancy or impact your pregnancy?
Speaker 2 (06:25):
Yeah? I think when we first planned being pregnant, and
I had envision like this beautiful, like summer pregnancy, like
going out wearing dresses and just enjoying this because we
only wanted two children and so enjoying this lost pregnancy
and really saving every moment. And when I was diagnosed
(06:46):
with MG, it just completely turned that on its head.
And I spent most days just in bed, barely getting
up to eat. And the pandemic hit during that time
as well, and so was different than how I envisioned it.
I think what was surprising to me was when I
was admitted to the ICU, they only prioritized me, and
(07:11):
so I was like, oh, but I want to like
prioritize my baby, but they just wanted to make sure
that I was safe and to save me, And so
I think that was difficult for me to process as well,
that like, in order to preserve my help that might
mean I could lose my baby, And so navigating those
things as well was really difficult. Wow.
Speaker 1 (07:30):
And I'm sure obviously this was not usual for your
physicians either, right, And so for them, did you feel
that they had a firm grasp on how to handle
your condition?
Speaker 2 (07:41):
I think there was a lot of me like preparing
myself because I wasn't sure how prepared they were for
my case, because like MG is so rare that I
don't think many of them had encountered the situation before.
I mean, I could sense like some excitement in like, oh,
this is new and different, like I want to learn
(08:02):
and be able to help you. But at the same time,
there was like fear in my mind because I'm like,
do you know how to help me? Do you know
what drugs to avoid? And so I definitely wanted to
make sure that I did as much research as I could.
In the ends, we did come across some issues, and
I think now I know how to be better prepared
(08:22):
for the future.
Speaker 1 (08:24):
Well, it sounds like just navigating that process of pregnancy
and this new diagnosis that informed your self advocacy. And
so what was that process of like you just mentioned about,
you know, doing your own research and sort of finding
your own voice in working with the medical professionals and
particularly postpartum.
Speaker 2 (08:43):
Yeah, it started from the beginning of my journey of
just finding out about this diagnosis, Like I rite away
went to look for all the resources that I could
my asthenia dot org and try to plug into as
many support groups as I could, and through that I
met someone who actually had musk MG as well, and
(09:04):
that was very helpful. But my senior dot org has
a list of all the cautionary drugs and a lot
of different resources. So when I went to the dentist,
I printed out the whole sheet for them, and I
think that's something that I'll continue to do, is having
that list on the back of my mind. I think
in terms of like the pregnancy specifically, when I gave birth,
(09:27):
actually they ended up giving me a drug that was
contraunicated to MG, and the last minute it was an
emergency c section, and it was already very traumatic and
at the end, I felt my throat closing up and
I was like, what is going on? And later I
found out I had to be admitted to the ICU
again because I went into a flare and I found
(09:48):
out that they had given me one of those drugs
that was contraindicated. And so postpartum learning how to advocate
for myself and calling the hospital and negotiating with that
bill that became very high because of the ICU visit.
It was definitely a learning experience of like, I need
(10:09):
to be able to stand up for myself. I need
to be able to be educated and know what I'm
getting into.
Speaker 1 (10:16):
Jessica, I want to go back to what you talked
about an incident where you said you had to be
cautious and advocate for yourself and your baby in terms
of the treatments that were given to you. What happened
in that situation and how did you handle it when
this was happening.
Speaker 2 (10:31):
Yeah, I think with pregnancy, there's not too many options
that you have, and so I really wanted to protect
my baby and make sure that we had I had
a safe pregnancy and healthy pregnancy, and I really prioritized that.
It was difficult because of course there are the more
aggressive drugs that will help me feel better. I think
(10:53):
it almost felt like choosing between like less or evil,
you know, having to figure out which strugs to try,
what to go with specifically and icee you at that time,
because I couldn't breathe well. I was going into respiratory failure,
and so I really had no choice and no energy
(11:13):
to kind of fight, and so I just tried to
make my wishes known as much as I could, and
they tried to accommodate me. But in the end everything
worked out. So I'm grateful, and I think for me
it felt empowering because I was taking my health into
my own hands. I was looking for my own options.
I was trying to make the best decision for myself.
Speaker 1 (11:35):
Jonathan, let me ask you, what were some of your
biggest fears as you were moving through this journey.
Speaker 3 (11:40):
Yeah, we just had our son and now we're having
a daughter. When you first become a parent, it's this
crazy thing where I think the dad is still figuring out,
you know, how do we be useful when the mom
is like Superwoman. There's only so much that I can
understand about what Jess is going through. I knew she
couldn't see well, she couldn't drive, So the things that
(12:02):
I could see in front of me were like, Okay,
how do I make sure that we get our kids
to where they need to go? How do I make
sure that I can help her get as much rest
as she needs to reduce as much stress as possible.
But I think hearing jess talk about it, coming out
of this, jess has been somebody who's just been much
more like, Okay, this is what we need as a family,
(12:23):
this is what I need as a person, And it's
been a lot healthier just in terms of our relationship well.
Speaker 1 (12:30):
And also it seems like you stepped up too in
terms of seeing like where are the places that I
can be useful here?
Speaker 3 (12:37):
Yeah? Absolutely.
Speaker 1 (12:39):
Also, Jessica, you mentioned in one of your blog posts
about something of a role reversal that you had in
your marriage and having to adjust your own expectations. Yeah,
I'm wondering how your experience within your marriage impacts your
outlook on how you deal with MG and the other
aspects of your life. Can you talk a little bit
about that.
Speaker 2 (12:59):
Yeah, I think before MG, I was a very controlling,
perfectionist type of person and having been diagnosed with MG,
I really had to break down all of my expectations
and the ways that I wanted things done and realized that,
you know, as long as we're alive, the kids are alive,
(13:21):
everything's okay. Like I don't have to have a neat
home all the time. I don't have to have everything
planned and scheduled perfectly, And that actually gives me a
lot of calm and peace knowing that you know, everything's
going to be okay. I don't need to have everything
perfect all the time. And I think I was able
to really see John in a new light too, seeing
(13:44):
how hard he was trying to really take care of
me and how well he was doing with that, And
that's really changed our marriage and the way that we
take care of our kids and parent now. I think
it's much more balance and less stress on my end,
knowing that all of those expectations they really were a
barrier I think to our connection, and so being more
(14:05):
grateful has helped in our relationship and just appreciating one
another for what we're doing more.
Speaker 1 (14:12):
That's wonderful.
Speaker 2 (14:12):
John.
Speaker 1 (14:13):
I'd love to hear your take on this. How do
you feel that your perspective has changed with your marriage.
Speaker 3 (14:19):
So I've always seen sort of Jess as a wonder
woman who's able to do like so much, just so
much determination, and to see sort of MG, it's almost
like you become a shell of yourself, especially during the
flare ups, and that was a big shock of like, okay, well,
somebody who has really been supporting our entire family. Now
a lot of that responsibility is like I need to
(14:41):
take care of her and I need to make sure
that as much as I can to alleviate her stress,
which I didn't do perfectly. But I think that that's
something where I think I've changed as well, just in
terms of, Okay, I need to become more aware of,
like hear the things that Jess is can certained about,
here's what really stresses her out. What can I do
(15:04):
to clean the house, you know? What can I do
to make sure the kids don't bother her when she
needs to rest. So I think there was a period
of about a year where I slept with the kids
just to make sure that if they had anything that
they could come to me first and wake me up,
to make sure that Jess had the recovery period that
was necessary. I think it changed me as a person,
(15:24):
and I think it showed Jess, you know, things can
be okay even if the worst case scenario in her
mind happens. We're still alive. Everything's still okay by the
end of the day. I think that that created the
space I think for us to have the gratitude of like, Okay,
we can be with our kids. We can have crazy
things happen that we think would have destroyed us, right,
(15:45):
but actually it's just things that continue to build the
relationship and keep going.
Speaker 1 (15:55):
We'll be back with more untold stories. Life with Mayasthenia
Gravis after a quick break as a global immunology company
committed to improving the lives of people suffering from severe
autoimmune diseases, our Genics is dedicated to partnering with advocacy
organization including the Miasthenia Gravis Foundation of Michigan or MGMI
(16:19):
and the Maasthenia Gravist Association of Western Pennsylvania or MGA
WPA in support of the MG community. MGMI is committed
to finding a cure for MG, improving treatment options, and
providing information and support to people with MG across the
state of Michigan through research, education, community programs, and advocacy.
(16:41):
To learn more about the MGMI, visit www dot MGMI
dot org. The MGA WPA strives to address the medical, social,
and emotional needs of all persons affected by MG throughout
Western Pennsylvania and provides educational information to those living with
this rare disorder as well as their families, the medical community,
(17:03):
and the general public. The MGA WPA is offering patients
and their families an opportunity to share their stories through
the my MG Story program. If you'd like to participate,
visit www dot MGA WPA dot org slash community and
(17:27):
now back to Untold Stories Life with Mayasthenia Gravis, Jonathan,
what are you doing to take care of yourself as
you are going through all.
Speaker 3 (17:39):
Of those It's interesting We started to delve really into
self exploration as well, because we found that we were
changing as people, and so we wanted to understand The
nagram was a really valuable tool in understanding. So there's
basically these nine different personality types, and it's a way
of understanding your personality, how you react to certain people,
(18:00):
how you react to certain types, and then also how
you grow in your type. So one thing that Jess
realized was that she thought she was a Nagram too,
but she was actually an Aagram three. So a Nagram
two is somebody who serves. A Nagram three is somebody
who achieves, which is about, Okay, I want to get
these goals. I want to present myself, you know. And
so what we realized was it seemed like, Okay, she
(18:23):
wanted to serve and like she found joy in that.
It was like, actually, that's not as fulfilling as being
a role model being inspiring to other people. So my
relationship to her changed Before it was like, Okay, how
can I facilitate her serving people to how can I
facilitate her to developing a platform for inspiring for meeting people.
(18:44):
But that totally set things into place of like, Okay,
these are things that she needs to have in order
to grow and to thrive, as you know, somebody who achieves.
And for me, I'm a seven, which is an enthusiast.
So I just like to experience things and I like
to have fun, and so I feel like from me,
I know how to take care of myself to a fault.
(19:05):
And I think it was really about stepping outside of
that bubble and knowing that Okay, there's actually deeper things
than just do I feel good? Do I feel peaceful
in this moment? Do I feel satisfied in this moment?
It's about how is my family feeling, how is jess feeling?
How do I make sure that I'm there for her,
because ultimately that's what creates that kind of happiness for
(19:26):
our entire family for the long term.
Speaker 1 (19:28):
Jessica, you're still also too, an ambitious at working mother, right.
How were you able to reclaim your professional life while
dealing with MG and raising your kids.
Speaker 2 (19:39):
Yeah, I think that's still a journey that I'm on.
I'm really grateful because during the time when I was
coming out of a lot of the symptoms and was
doing better, I reached out and got a remote operations
kind of role at a nonprofit and so that was
about twenty hours a week. I worked from home. I
(19:59):
did it to drive, and also it was flexible. I've
been in that role for two years and actually at
the end of last year, I started a digital marketing
boot camp, and so I think that was one step
into doing something different for myself because I had lost
like my mid twenties. I feel like where a lot
of my friends were building up their careers. I feel
(20:22):
like I wanted to reclaim that, and so it's been
a journey and finding success along the way has helped
me feel like that reclaiming of purpose and passion and
so yeah, I think I'm just going to continue doing
my best and we'll see where it leads.
Speaker 1 (20:41):
Yeah, And it sounds like it's just also your sense
of discovering things that you again might not have thought
that you would were going to be end up doing,
which obviously is an important piece here as you're kind
of navigating this in addition to navigating life as a
young mother. A mother of young children, how do you
explain diagnosis to them?
Speaker 2 (21:01):
Yeah, with my son, I think he does remember, And
with my daughter, I'm not sure that she remembers because
she was so young at the time when I was
really really sick. But I think when I do explain
when I'm tired or things like that, I just I
tell them, like, mommy's really tired, I really need to rest.
(21:23):
There was a time before when Mommy was really sick.
Do you remember that? And trying to remind them that
it is like a part of my journey. It is
still a part of something that I'm fighting, and so
I think like being able to explain to them in
ways that they do understand right now and later on
maybe I can give them the bigger picture.
Speaker 1 (21:44):
That's so important just with kids to be able to
realize that this is something that they're part of as
a family unit. And that sounds like a really great
approach that you're taking to me.
Speaker 2 (21:54):
Thank you.
Speaker 1 (21:55):
When you started to share about your MG journey, you
mentioned that you started doing some writing and connecting with
others when you first got diagnosed on social media. How
did you find that community and how did that change
your outlook about your MG diagnosis.
Speaker 2 (22:13):
Yeah, when I first was doing all the research and
finding the support groups, there was actually a support group
that was really close to my work, and so I
went after work, I walked there and was able to
meet actually someone around my age, also a woman, and
so we connected right away, and she had generalized MG
(22:35):
and she was very active in the MG community and
she would organize like the MG Walk in San Francisco,
and so I think being connected with her really helped me.
And we ended up meeting and grabbing lunch one day,
and I just remember like laying on my couch and
she totally got it. My eyes were weak, I had
(22:57):
no energy after our lunch, and I just laid there
and she just sat with me. And I think having
those experiences with people who really get it is just
so meaningful because it can feel like so lonely when
no one immediate too can truly understand, and so finding
those people who you can really connect with, I think
(23:18):
is so important. And so that was one way, finding
her through the support group and then through social media.
I was very vocal about my MG diagnosis and journey,
and so through that finding other people through like the
hashtag tagging my posts and then looking through the hashtag
myceeno gravis itself finding other advocates. I think it was
(23:40):
really helpful, and we were able to DM each other
and I could ask questions, and so finding support groups
also on Facebook, there's a lot of Facebook groups that
are specific to the different types of MG as well,
like I joined at Musk group. Reading through all of
those posts and connecting with people online, I think is
(24:01):
a great way if you are unable to get outside,
to still have that community.
Speaker 1 (24:07):
Yeah, I mean, my goodness, how else you know, if
you think about it, what did we do before that
you know, to be able to find people with this
rare disease and not only to just connect, but it
actually is providing some very tangible support for you. Yeah.
Do you feel that this also helped you be a
better advocate?
Speaker 2 (24:26):
For sure? I think seeing what other people were sharing
and the questions people had and the different answers that
people had as well, and their different resources people would
share was always really helpful. With the support group, they
go through different topics with different neurologists, and so I
think that was always cool to see like what new
(24:47):
research was coming out and what people were interested in
in the different trials that were happening.
Speaker 1 (24:54):
And even more specifically, were you able to connect with
other Asian American people living with MG?
Speaker 2 (25:00):
Yeah? So actually the girl that I had met at
that support group was Asian American as well, and so
it just felt like this really divine thing where we
just connected on so many levels. And I'm really grateful
having that community and vulnerability to reach out and have
communities important.
Speaker 1 (25:17):
Absolutely, and for both of you having learned so much
throughout j just because MG journey. How is your view
and approach to advocacy change since that initial diagnosis?
Speaker 2 (25:29):
Yeah, I think knowing, like with everything that I went through,
I definitely recommend, like people who are newly diagnosed to
be educated, to spend time during research to find all
those resources. And there are so many out there to
be prepared for different appointments that you have, and yeah,
know how to advocate for not only like your health
(25:52):
in terms of like your physical health, but also like
your mental health. I feel like everything is so intertwined,
like physical, mental, spiritual, they all affect one another. I
could feel it in my body, like especially when I
was really sick, how stress could trigger a flare. And
so knowing like your boundaries, yeah, I think is really important.
Speaker 3 (26:13):
And I feel like as sort of the spouse who
hasn't had the illness but is trying to understand. I
think a lot of it is about when people don't
understand much about an illness. I think there's a lot
of space that you need to create around. I think
that creating that buffer of like, Okay, Jess has social needs,
let's figure out how to fulfill them to hope or
(26:33):
feel like part of a community while also not exposing
too much, you know, it just allows her to control
that space and create that buffer for her.
Speaker 1 (26:43):
So if you guys could go back to when you
were first diagnosed, Jessica, what would you say to yourself.
Speaker 2 (26:50):
I think I was so overwhelmed and fearful at the
time that even just something like everything will be okay.
I know it sounds generic, but that this is not
like the end, that there is hope, and I think
to lean in to the support and community that you
(27:10):
have around you, because I was so afraid of so
many things that you know, it's difficult for me to
really let go and not completely stress myself out over
every single question that I had. And so I think
everything will be okay. Lean in to your support.
Speaker 1 (27:31):
Jonathan, anything you would say to yourself if you could
go back.
Speaker 3 (27:36):
Yeah, I think what jess is saying, Everything's going to
be okay. There's just so much uncertainty about something that
is so rare. But you know, there's a lot of
really great research going on, especially with the Internet. There's
a lot of people out there who are struggling the
same thing, and the world is a lot friendlier than
I think we first started out with.
Speaker 1 (27:58):
Wonderful. So really appreciate Jessica and John your time and
just how honest and forthright you were in this conversation,
and I know that the information that you share today
will be helpful and continues to be helpful to people
with MG. Thank you, Thank you, absolutely, thank you. I
(28:21):
so appreciate Jessica and John for their candor and openness
during our conversation. For many women, learning to self advocate
can be a very daunting and hard task, but navigating
her MG journey and empowering her husband along the way,
Jessica's story and strength are truly inspiring. John has such
a valued and unique perspective as someone who is living
(28:42):
with MG by way of loving and caring for his wife.
It's so important to remember that these rare conditions are
also impacting the lives of family and friends who love
those living with them. The way that John has learned
to take on more responsibilities and step up for his
family is reflect of the sort of community we all
hope to build with our lives. They are truly a
(29:04):
powerful couple, as shown through their resolved to strengthen their
marriage as it was tested along the way. Don't forget
to 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 GenX
and Closer Look, and hosted by me Martine Hackett. Our
(29:26):
executive producer is Mali Sosha, our EP of Post Production
is Matt Stillo, and our producer is Sierra Kaiser. This
episode was written and produced by Tyree Rush
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