December 27, 2023 • 32 mins
Nicole is an epidemiologist whose life took an unexpected turn with an MG diagnosis between pregnancies. She had to prioritize how she cared for herself through postpartum depression, while also adapting to parenthood with MG. Nicole discusses how her background in public health provided a foundational understanding of the condition. But ultimately by leaning on her family and caring specialists, she learned to reapproach her life with MG. Through her thoughtful insights, Nicole shares a deeper appreciation for resilience and adaptability through unforeseen health challenges.
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Speaker 1 (00:01):
This podcast is not intended to provide medical advice. Please
talk to your doctor about any medical concerns. Hi everyone,
and welcome back for season two of Untold Stories Life
with a Severe Autoimmune Condition. This is a podcast from
Ruby Studio in partnership with Argenix, and I'm your host,
(00:22):
Martine Hackett. As you may remember from our first season,
I'm an Associate Professor and Director of Public Health Programs
at Hoftra University. As a researcher, professor, and public health expert,
I've spent my career studying the complex realities of health
care disparities and the barriers people face. On this podcast,
I speak with real people living with a variety of
(00:42):
severe autoimmune conditions. Last season, we focused on life with
my Asthenia Gravis or MG and expanded the conversation around
this often overlooked condition. Having learned so much from our
amazing guests, this season, we will be highlighting even more conditions.
Every person living with a severe autoimmune condition has a
(01:04):
unique story to tell. That's why in each episode we'll
explore how each journey is unique and powerful, emphasizing how
community and care are essential parts of each experience. Will
also highlight the importance of self advocacy and support. Today's
episode will focus on MG, but throughout our second season,
(01:24):
we'll also hear from people living with conditions like chronic
inflammatory demyelinating polyneuropathy or CIDP and more. To kick off
the new season, we'll hear from our first guest, Nicole.
As an epidemiologist, she began to research may aesthenia gravis
after the onset of her symptoms. She brought her concerns
(01:45):
to her ophthalmologists, who confirmed her suspicions and diagnosed her
with MG. As a wife and new mother, Nicole juggled
her MG treatment while holding focus on the health and
well being of her young child, using her knowledge of
public health to navigate her life postpartum. Her story is
one of resilience and compassion. This episode contains references to
(02:08):
postpartum depression and other mental health concerns, so please take
that into account before listening. Hey, Nikole, thank you so
much for joining us today. As somebody who's trained in
public health myself, I'm really interested in getting your story
and understanding how your background also has informed your approaches
(02:33):
to dealing with NJI. So let's start at the beginning,
When did you know something was wrong? What were some
of your early symptoms, and what was that path to
diagnosis like for you? Right?
Speaker 2 (02:44):
So it was May twenty twenty one. I woke up
one day and I just had some blurry vision and
I was like, great, my lasi's going bad. I had
been doing a lot of work looking at screens.
Speaker 1 (03:00):
Oh.
Speaker 2 (03:00):
I was just like, okay, I need to just rest
my eyes this weekend, and I got some like blue
light glasses, thinking like you know, I'm just it's too
much screen time.
Speaker 3 (03:10):
Did kind of like a screen.
Speaker 2 (03:11):
Cleanse that weekend and it went away after a couple days.
Speaker 3 (03:16):
So I was like, great, it must have been that
it worked.
Speaker 2 (03:18):
And then about three months later it happened again, significantly
worse and it did not go away. And then in
addition to the blurry vision, I started having double vision,
and so doing what I do as an epidemiologist, I
was like furiously researching, like I kind of had my
checklist of things that I wanted to talk with the
(03:41):
doctor about. Once I got there, the ophthalmologist was like, yeah,
I agree, it could be the myocenia MS brain tumor.
Speaker 3 (03:49):
I was like, oh, great, all horrible things.
Speaker 1 (03:52):
Wow.
Speaker 2 (03:52):
So yeah, thankfully they took it really seriously. I went
that same day to do blood work. I went the
next day to get an MRI. By Friday, I got
the blood work back and it was positive for.
Speaker 3 (04:03):
The mycenia antibody. So I got set up with a
neurologist in town and the fun journey began.
Speaker 1 (04:10):
Wow, I mean, and so quickly too, you know, to
get to that point.
Speaker 2 (04:15):
Yes, And I'm so grateful for that because I know
it can take a lot of people years and years
and suffering. I was lucky enough that it started with
my eyes and it was very abnormal. Not just the
eyelid drooping or weakness in that kind of area. It
was pretty significant where you know. I went to grab
the door handle at the eye doctor's office, and my
(04:36):
husband's like, it's all the way over there. I was like, oh,
oh okay, Like I couldn't really, I couldn't function with
how bad it was.
Speaker 1 (04:44):
Nicole's discovery is amazing, but it also highlights one of
the first hurdles of living with an autoimmune condition, getting
a diagnosis. Ophthalmology is a specific branch of medicine for
eyes and vision with the presentation of ocular issues a
hallmark of ngson, Nicole was set on the proper path
to specialized care. Yeah, and so the opthalmologist was the
(05:06):
one to confirm your diagnosis. And this is really the
first time on the show that we've discussed how an
eye doctor can help to understand how to get a diagnosis.
So how informed were they about this condition and did
they refer you to a specialist after?
Speaker 2 (05:21):
Yes, so they did have a neuroopthalmologist on staff, so
they were kind of familiar with it. I was referred
to a neurologist that also specializes in neuroopthalmology. And once
I was in I've had, you know, no issues as
far as maintaining that and doing what I need to do.
Speaker 1 (05:39):
So tell me what was the immediate impact on your
life once you did have that diagnosis of MG.
Speaker 2 (05:45):
It was definitely a big shock, just a lot of processing.
Speaker 3 (05:52):
And knowing that.
Speaker 2 (05:55):
Being so young, it's you know, my whole life is
going to be very different from how I thought it
was going to be. I had my son at the
time was like a year and a half. Just thinking
about what that would mean for growing our family in
the future and being able to care for him.
Speaker 3 (06:15):
At that point. It was just ocular miasenia, so.
Speaker 2 (06:20):
Overall manageable, but it caused me to be very dependent
on other people. I had to have my husband drive
me everywhere for a long time if.
Speaker 3 (06:29):
It was something with work.
Speaker 2 (06:31):
Thankfully, I have kind of like a counterpart that does
a different department, but she has to drive to some
places as well.
Speaker 3 (06:37):
If I needed to drive, I would.
Speaker 2 (06:39):
Be like, hey, want to come with me tag along
and make it part of your protocol for the year.
Speaker 3 (06:45):
Made it work. My mom is a nurse.
Speaker 2 (06:48):
It's just helped to kind of talk through things with
her and work through that. And I think I just
killed it with positivity and just was like, Okay, we're
just I have no choice.
Speaker 3 (06:59):
I have to move forward.
Speaker 1 (07:03):
Nicole is the mother of two young children. Her son,
now three and a half, was born before her MG diagnosis. However,
during her second pregnancy, Nicole needed to be considerate of
her MG when preparing for her daughter's birth. Speaking of
moving forward, then you had a very different experience with
your daughter, who was about five months old.
Speaker 3 (07:25):
Now she just turned six months last week.
Speaker 1 (07:29):
Yeah, excellent, And so can you tell us what it
was like being pregnant and giving birth while also managing
your MG.
Speaker 2 (07:36):
Yeah, yeah, she was very planned. We wanted to make
sure that I took all the precautions I could beforehand,
So I got the thymectomy. I waited till I got stable,
got the ok from the neurologist and my obgun and
said okay, let's just go for this and hope knowing that,
I think underlying the whole time was when is the
(07:58):
other shoe gonna drop that it could get worse again?
And is something going to happen to her? Was I
think my biggest concern.
Speaker 3 (08:04):
So it was.
Speaker 2 (08:05):
It was definitely a little harder as far as I
felt a little more detached throughout the pregnancy of like
if something happens, and then just the worry underlying worry.
My body definitely knew before I did that I was pregnant.
That's when it started to expand beyond ocular. I got
really bad morning sickness, which really was all day sickness.
Speaker 3 (08:28):
I woke up not.
Speaker 2 (08:29):
Being able to chew. It was a vicious cycle. Could
not eat to combat the morning sickness. So and it's
like another med and it's just ironic. How like in
my first pregnancy, I was like, augh, I'm not even
gonna take a tile and all, like I don't need it,
I'm fine. And here I am like chugging pills every
couple hours and then adding another one overnight.
Speaker 3 (08:47):
But that seemed to do the trick.
Speaker 2 (08:48):
Got on some meds, you know, add onto the list
for some morning sickness, and things were great up until
about middle of the second trimester. Of course, right before
I'm going to like a really big conference for work
out of state, I started having a flare up ocular
flare up again. And I had my routine at that point,
so it wasn't horrible, but you know, it was an ideal.
(09:10):
I had things I wanted to do, and I still
did them, just with a little bit of a wonky Yeah,
we made it work. I just listened to my body,
which is just hard being a young person of like
listening to when you need to slow down.
Speaker 3 (09:26):
I think it's really one of the hardest parts.
Speaker 1 (09:29):
And like you said, your body was already giving you
those signs even before the pregnancy tests were you.
Speaker 2 (09:34):
Know, yes, yes, and so I yes, my body knew,
my body knew. But I had been seeing specialists throughout
the pregnancy, and she was doing so well and growing
really well.
Speaker 3 (09:45):
And no issues.
Speaker 2 (09:47):
So I think I definitely started to feel a little
bit better about it, but it's always after but I
just kept positive and did the things.
Speaker 1 (09:54):
I wanted to do.
Speaker 2 (09:55):
Thirty five weeks pregnant, went to the Taylor Swift concert
and dance my butt off all night.
Speaker 3 (10:00):
It was amazing, It.
Speaker 2 (10:02):
Was worth it, and she was born like about a
week and a half later from that.
Speaker 1 (10:08):
And yes, fifties are unstoppable, I guess right, So yes,
listening to Nicole's story, I can't help but be reminded
of Jessica from Season one and the difficult pregnancy she experienced.
A twenty sixteen study published in the American Academy of
Neurology Journals suggested that women have an increased risk of
clinical symptoms of MG during postpartum. Additionally, the CDC reports
(10:32):
that one in eight women experience postpartum depression symptoms. With
her own postpartum diagnosis, I can only imagine what Nicole
learned about herself during that period. Let's talk a little
bit about your postpartum experience and how MG impacted that,
specifically talking about postpartum depression and as we know as
(10:54):
a significant concern for many mothers, How did you cope
with postpartum depression and managing your mayasthenia dress?
Speaker 3 (11:03):
Right, it was probably some of the darkest times of
my life.
Speaker 2 (11:09):
I had her on a Tuesday, which the labor and
the delivery part was a dream. Oh you know, she
came very very fast, unmedicated, you know, just wonderful. She
was an angel to me and has been since since then.
And so I went home feeling great, and basically by
(11:29):
that Friday, I was like, I can't I can't carry her,
you know, I was like something, something's happening. I can't
lift my neck off the bed. I'm just having a
really hard time moving my body. It just kept getting
progressively worse. And I asked my husband, I was like,
did I cry this much last time? Because I know
I cried a lot, but I don't think that I
(11:51):
cried this much. I just felt like I couldn't do
my job as a mother to do the basic things
of care for her and carry her. I mean, she
was only six pounds, Like how much more basic can
it get? So I think that really took a toll
on me as far as the depression. Knowing that the
myocenia was affecting me so much that I just couldn't.
(12:14):
I could not even do the bare minimum to care
for myself or for her. So I knew I needed
to get the depression in check and then worry about
the myocenia. So thankfully my obgui N had started two
week postpartum visits the week.
Speaker 1 (12:34):
Before, because those were some of the changes right.
Speaker 2 (12:36):
With yes, the rectation, I would have normally had to
wait till six weeks or like try and call and
hassle and whatnot.
Speaker 3 (12:42):
And I don't know if you have a child or
have had those.
Speaker 2 (12:47):
Questions asked to you postpartum in the office, you know
that they screened for depression and I was.
Speaker 3 (12:52):
Like in tears, like yes, all of them.
Speaker 2 (12:55):
And I was like, oh, yeah, this is this is
a problem. So they gave me a prescription for antidepressant
and within a week I.
Speaker 3 (13:06):
Was a new person.
Speaker 2 (13:07):
Wow, And realized that even before the miocenia, I definitely
had some underlying anxiety in general, and it really.
Speaker 3 (13:16):
Just took the edge off.
Speaker 2 (13:17):
That took the edge off the stress of the myocenia
as well. Empowering myself during my diagnosis of myocenia really
helped to like, this is not right, This is not
how I normally feel. This is abnormal, so I need
to do something about it.
Speaker 1 (13:34):
And by being able to be so sensitive to your
own body and your own feelings, you're able to then,
like you said, take that piece of you. That's like
I'm gonna take action exactly.
Speaker 2 (13:44):
Yeah, which is just something that now has come second
nature with the myocenia diagnosis.
Speaker 1 (13:49):
You just have to in terms of thinking about that
and listening to your body. What were the signals that
you saw that told you you maybe need to slow down?
Speaker 3 (14:00):
Yeah, it's hard.
Speaker 2 (14:01):
The key to my scene, they say, is like rest
and sleep and go slow. And when you have a newborn,
that's not like a setting that you can do. Yeah,
just hold on baby, hold on exactly. So I think
where it really hit me. I realized we were downstairs
and I was like, I can't get up off the couch.
My medication is not working and I couldn't stand up,
(14:25):
and I was like, you know what, I just need
to go to bed. Let's just get upstairs and we'll
deal with it tomorrow. And you know, on Monday, I'll
call the doctor that we need to get something drastic going,
and I fell going up the stairs, and that's when
it hit me. I was like, that's the first time
with this diagnosis that I ever was just like, I
(14:47):
don't want to die.
Speaker 1 (14:48):
Oh my god.
Speaker 2 (14:49):
That was probably the lowest point in my life to date.
My husband had to drag me to our room, up
into my bed, and the Angel of a Man, my
daughter formula for all her feedings at night, change her
I pirs stayed in her room so I could get
rest all night. I'm just forever grateful for him, my
supports system here at home, and everybody else, because that's
(15:12):
the only thing I could do is I just had
to stop and rest my body and let other people
take over, which.
Speaker 3 (15:21):
I never would have done before.
Speaker 2 (15:23):
I had no choice but to ask for help and
be blunt about it what I needed and feel comfortable
doing it.
Speaker 1 (15:33):
We often say that chronic illnesses don't have to define you,
and while that might be true, they do change you.
Learning to ask for help can feel like a complete
shift in identity.
Speaker 2 (15:46):
I've always been very independent, very just like to kind
of do things on my own, but I had to
really hand the reins over a lot more than I
ever had in my life, and it was nice to
know that I could just Okay, relax and he's got this.
Speaker 3 (16:02):
I don't need to be one.
Speaker 1 (16:04):
Hundred percent all the time and to know that that's okay,
and that's kind of how it has to be.
Speaker 2 (16:10):
Yes, Yes, but I think it just had that had
that silver lining effect of like making me a more
relaxed person in general, not so uptight about everything, where
I'm definitely more No one in my family would ever
describe me as go with the float, that's for sure.
Up until this point. Okay, they're like you maybe a
little too go with the flow now, and so I'm
(16:32):
just you know, we're just going with it and that's
all I can do.
Speaker 1 (16:37):
We'll be back with more untold stories after a quick break.
As a global immunology company committed to improving the lives
of people living with severe autoimmune conditions, our Genics is
dedicated to serving the Mayasthenia gravis or MG community through
MG United. MG United was created by our Genics to
(17:00):
support those living with MG and their caregivers by providing
the latest information, resources and support to address the unique
ways MG can affect their lives. Wherever you are in
your mayasthenia gravist journey. MG United wants to help make
today a better day. For more information about MG United,
(17:21):
visit mgdash united dot com. And now back to untold stories.
You talked about what it was like to learn how
to ask for help, especially as a young woman. What
were some of those challenges of leaning on others or
giving up part of that independence.
Speaker 2 (17:41):
It was just things that you never thought you would
have to ask for. I had an amazing friend come
over just to blow drow my hair because I had
used the energy I had for that day to wash
it for the first time in probably a week. And
she's just like, yeah, I'll come over and blow the
things you would never think to ask, and you would
feel bad to ask. People brought so much food and
(18:03):
just sat with me, just to be with me, because
I just felt an isolation that I had never felt before,
even though my husband worked from home. When he was here,
it was just asking people to come over, Hey, just
come on.
Speaker 1 (18:14):
Over, and they did.
Speaker 2 (18:16):
Family, and they did, and they did, and that's when
I realized they want to be there, they want to
help me, and I would just always have so much guilt,
especially like if it involved like a financial ask like
I had no desire to pump whatsoever in the beginning.
I just felt like that's the last thing I want
to do. And my aunt was like, I'll you know,
(18:36):
if you need something, let me know. I was like,
you know what, I am going to ask you for
a portable pump. That way I can sit comfortably, I'm
not attached to the wall, you know, things like that.
We hired my doula postpartum awesome, to help with my
daughter's visits while I went to medical appointments or just
took a break, and she was just so amazing.
Speaker 1 (18:57):
For all of that. Duela is really our angels, I
know are.
Speaker 2 (19:02):
She is just wonderful and she normally doesn't do postpartum
visits like that, but I think I was a pathetic enough.
Speaker 3 (19:09):
Situation to like she probably is. She probably could use
some help.
Speaker 1 (19:13):
That's part of their scope of practice.
Speaker 2 (19:14):
It's okay, right, yeah, But thank goodness, my nerologists really
listened to me after that falling situation. I called him
as soon as their office opened after a Memorial Day
and I was like, I need I need something urgently,
Like I don't want to go to the er. It's
not that bad, like I can breathe, okay, but if
I don't get something now, it's gonna be bad.
Speaker 3 (19:37):
We did plasmaphrisis. I did that for the first time.
Speaker 2 (19:40):
After four days, I cannot even explain, like I forgot
what it was like to feel normal and to not
have to think about this illness every day.
Speaker 3 (19:51):
I went medication free for like a month. My life changed.
Speaker 2 (19:54):
I could carry my daughter, I went out and took
her places, even just going for a walk. Before I
would have been like huffing and puffing trying to catch
my breath when I'm normally a very active or I
used to be a very active person.
Speaker 1 (20:09):
Plasma paresis is a therapeutic intervention method that uses a
centrifuge or filtration system to remove and replace blood plasma.
The exchange helps to improve muscle strength within days, but
usually only lasts for a few months. These treatments would
be vital for a mother of a newborn who consistently
needs to be held at all hours of the day
(20:30):
or night, and anyone who's parented a newborn can tell
you that there is simply some exhaustion that no plasma
transfer or pill can counteract. Obviously, parenting while dealing with
chronic illness can be demanding. How has your diagnosis affected
this parenting journey that you're now on. What works for
you for managing both your health and responsibilities as a mother.
Speaker 2 (20:54):
For managing my limitations with my older son, I think
he's starting to unders sand now. He is three and
a half, so I think he's understanding just the concept
of Mommy needs to rest her body, because I tell
that to him too. You know, I think it's time
to rest your body. Let's go take a nap. So
he understands of like, yeah, my body's feeling tired. But
(21:15):
there are times where yeah, I have to say, okay,
dad's got to wrestle with you. I can do this craft,
but not that negotiating. I can't carry you down the stairs,
but I can hold your hand. He's very understanding of that,
and I try to say, you know, tomorrow, you know,
we'll do this, but today, you know, mommy's a little tired.
With my daughter, we really had that rough start, yeah,
(21:36):
and I did not have that immediate connection with her.
But through work, I got donated an extra two months
of leave from your coworker, from my coworkers, and I
was like, oh, my gosh, I didn't know this. Many
people liked me, and it just I was so grateful
because it allowed me to kind of get a redo
(21:57):
of that first month that was just and I felt
like I couldn't enjoy the experience of being her mom,
and it allowed me to get some time back and
really just enjoy our day to day.
Speaker 1 (22:11):
But we make it work.
Speaker 3 (22:12):
It's just I let him know what I can.
Speaker 2 (22:14):
Do in the moment, and he seems to just kind
of go with it.
Speaker 1 (22:18):
It's such a great way to like build empathy and
for him to like really early on, just to understand,
you know, like you said, other people's feelings, other people's limitations.
Speaker 2 (22:28):
Yes, and I have heard that from his teachers. He's
just the sweetest little boy. And I'm so grateful that,
you know, he's just kind of going with it.
Speaker 1 (22:37):
It's just the cards were doubt. Yeah, and I'm sure
he's a great big brother too. He Uh.
Speaker 2 (22:42):
The love he has for this girl just melts my heart.
It's going to be her protector for sure, Oh for sure.
Speaker 1 (22:49):
Sweet Nicole's work as an epidemiologist is mostly centered around
food and water born diseases. While not doctors themselves, epidemiologists
study incidents that lead to the cause and spread of disease.
Her medical background also gave her advantages in working with
her doctors. For example, when most people experience a symptom,
(23:10):
they go to the emergency room, but Nicole knew immediately
her double vision was caused to see an ophthalmologist. Even so,
there are some things her training could not account for.
What are some aspects of this journey that you could
not have pictured having navigated without this background that you had.
Speaker 2 (23:30):
I think feeling comfortable talking to medical providers and just
knowing how to speak to them, kind of speak their
language is definitely a privilege that I have having the
background in public health, knowing how to read my own
medical records and knowing what they mean and my own
lab results and knowing for the most part what they mean.
(23:52):
I'm not a doctor, but you know, I've seen more
records than I would like to in my life. But
just kind of having at least a better understanding procedures
and different things like that has really been very beneficial.
Speaker 1 (24:06):
To give you that context. It sounds like, right.
Speaker 2 (24:09):
Yes, m mmm mm hmm, that context to know what's happening.
Speaker 1 (24:13):
That's it, right, That confidence and the ability to see
that these physicians are your peers.
Speaker 2 (24:17):
Right exactly exactly, And I think that I don't think
it should be like this, but I think it lends
them to them once.
Speaker 3 (24:25):
They find out what I do in my profession.
Speaker 2 (24:29):
I think explaining things a little more in medical terms
and not trying to make it more basic and really
talk to me as a counterpart.
Speaker 1 (24:41):
Yeah, and it definitely affects you, like you said, and
how you're able to address that information as well to
understand right, and as we know, living with a chronic
condition can be emotionally challenging on an individual level. So
how did your public health training recognizing looking at the
big picture is what we're kind of trained to be
able to do, how did that inform your approach to
the mental and emotional aspects of living with my aesthenia gravis.
Speaker 3 (25:05):
Just the big picture.
Speaker 2 (25:06):
I was like, I have to do something to I
can't fix this, I can't cure this, and you know,
I'll take my treatment day by day, but I want
to try to be engaged, be involved, or be as
helpful as I feel I can with the limitations I
have of working full time to children, you know, just
regular life. So I do participate in like market research
(25:32):
to provide information to hopefully benefit others. And that's why
I wanted to, you know, talk on this podcast to
hopefully help somebody, because I didn't find a ton of
information when I was pregnant, and it's a small margin
of people that have the mycenia, but then to get pregnant,
it's an even more narrow margin.
Speaker 3 (25:52):
And you can't never have too much information as an
empty malgy.
Speaker 1 (25:55):
Yeah, exactly right, and to be able to sort through it.
And it sounds like also in particular the post part
of it experience too, you know, exactly to really know
like the day to day what is that like?
Speaker 2 (26:05):
Yeah, because I was posting on like a Facebook group
for pregnant women with my CDIA, like what can I
expect and what you know?
Speaker 3 (26:11):
Any ideas or and what you know?
Speaker 2 (26:13):
And so I shared my story on there and what
happened after to hopefully help others at least guiding.
Speaker 3 (26:20):
I know it's very unique person to person.
Speaker 1 (26:21):
But I mean, this is what goes back to thinking
about public health, right, is that we're dealing with these populations,
but yet when we have these conditions that you know,
we don't necessarily study because they perhaps affect fewer folks.
But for the people who are going through it, it's real.
Speaker 3 (26:37):
It's their world.
Speaker 2 (26:38):
Yes, yeah, it's our whole world. So I love seeing
now that there's more research out there on it. I
found the podcast and I was like, oh my gosh,
people are talking about this, and I was like shared
it with everybody that I knew. It was like, you
all need to listen to this. Everybody needs to know
because I know I'm one of many who probably have
(26:59):
str silence for too long. I mean other than my
close family and coworkers that I see regularly. This is
my coming out moment here. This podcast is going to
be sharing it, you know, with the world and as
they say, Facebook official, you know kind of thing.
Speaker 1 (27:17):
Welcome to the other side, Nicole.
Speaker 2 (27:19):
Yes.
Speaker 1 (27:24):
According to research conducted by Johns Hopkins Medicine, MG is
more likely to occur in young women between the ages
of twenty and thirty and older men over the age
of fifty. While there isn't a conclusive number of women
with MG, family planning is a very important life decision
women must consider alongside their MG diagnosis. One of the
reasons why this series was created was to help highlight
(27:47):
and empower different autoimmune communities. At that intersection are parents
learning to plan for families, manage expectations, and even grow
a chosen family. You shared some really powerful moments about
MG and how it dramatically affected you shortly after the
birth of your daughter. Was there a particularly low moment
(28:09):
of dealing with postpartum that you feel comfortable sharing.
Speaker 2 (28:13):
Yeah, I mean, obviously aside from the physical things and
just the emotional of like is she better off without me?
Do I deserve her? Like she's perfect? She started sleeping
through the night, I like three months, wow, and no,
I was like, well, she knows, because if she'd done sleep,
(28:35):
you know, she's gonna kill me.
Speaker 3 (28:37):
So I just.
Speaker 2 (28:39):
Was like I had very low feelings of like I
don't even deserve her, Like she deserves such a better.
Speaker 3 (28:45):
Mom who can care for her.
Speaker 2 (28:47):
And that's what my therapist likes to call stink and
thinking and so to kind of undo myself from that
and like call myself out.
Speaker 3 (28:56):
Nope, that's not helpful. Yeah, she is right where she belongs.
Speaker 1 (29:01):
And she's got the perfect mom for her.
Speaker 2 (29:04):
Yes, exactly, There's no better mom for her than me.
So that was probably the lowest point, but to be
a little vain for a minute. The hardest part, other
than caring for my children, has been not recognizing myself
in photos.
Speaker 3 (29:20):
I cannot smile like I used to. I don't have.
Speaker 2 (29:23):
Any pictures from my baby shower saved or printed anywhere
because you know, when eye was this way and I
couldn't smile right, and so I just don't like looking
at them.
Speaker 3 (29:34):
And my mom will never let me live this stone
for talking about it.
Speaker 2 (29:39):
But one time in two thousand and seven, Taylor Swift
told me I had a nice smile. Oh, and so
that gets me down all the time of like, ough,
I can't smile like that like how I used to.
So it's just the little things too that really had up.
Speaker 1 (29:55):
Seems to me, I don't know much about Taylor Swoop,
but it seems to me that she would love you no.
Speaker 2 (29:58):
Matter what I I would think, So you know, I'm
fully committed. So yeah, it's just it's a full range
of little minute things like that all the way to
the full gamut of inadequate motherhood, you know. And I'm
so grateful that I asked for help and it was
able to move past that depression, not to say that
(30:22):
it's perfect. There are days that I cry. It's just
a day by day journey and making the best of it.
I definitely through that have realized I need to do
the things when I can and make the most of
the time with my family. We're just doing as much
as my can, visit friends that I haven't seen since
(30:44):
before COVID. I was like, I'm going to do it.
I'm going to regain my postpartum and you know, claim it.
Speaker 1 (30:51):
Yeah, own it exactly, and look at you and you're
absolutely doing it. And Nicole, I really appreciate this time
that you gave us today and to share your story
and to step on this side as you mentioned of
really sort of being public about your MG journey. And
I know that what you shared with us today is
going to help a lot of people.
Speaker 3 (31:11):
Well, thank you so much.
Speaker 2 (31:12):
That is like I'm going to be brought to tears
back because that's all I ever want. Like I obviously
don't do the job for money. I do it, you know,
because I enjoy it and it's a passion and to
help people and to educate people. And if I can
even help one person with this information, I'm beyond grateful.
Speaker 1 (31:32):
Beautiful it really is public health work. I didn't think
about it like that, but it really really is. By
sharing this, Thank you so much, Nicole, Thank you. It
was so great listening to Nicole talk about her experience,
and I especially love being able to nerd out with
her as a fellow public health researcher. Nicole's story underscores
(31:53):
how knowledge helps with understanding autoimmune conditions, but it doesn't
remove the emotional trauma of dealing with them. Experiencing these
emotions is such an important part of coping with MG
or any other autoimmune condition. Thanks for listening. We'll be
taking a short break through the new year, so join
us again in three weeks. On January seventeenth. Untold Stories
(32:18):
Life with a Severe Autoimmune Condition is produced by Ruby's
Studio from iHeartMedia in partnership with Argenix, and hosted by
me Martine Hackett. Our executive producer is Molli Sosha. Our
EP of post production is Matt Stillo, along with supervising
producer Sierra Kaiser and post producer Sierra Spreen. This episode
was written and produced by Tyree Rush
This podcast is not intended to provide medical advice. Please
talk to your doctor about any medical concerns. Hi everyone,
and welcome back for season two of Untold Stories Life
with a Severe Autoimmune Condition. This is a podcast from
Ruby Studio in partnership with Argenix, and I'm your host,
(00:22):
Martine Hackett. As you may remember from our first season,
I'm an Associate Professor and Director of Public Health Programs
at Hoftra University. As a researcher, professor, and public health expert,
I've spent my career studying the complex realities of health
care disparities and the barriers people face. On this podcast,
I speak with real people living with a variety of
(00:42):
severe autoimmune conditions. Last season, we focused on life with
my Asthenia Gravis or MG and expanded the conversation around
this often overlooked condition. Having learned so much from our
amazing guests, this season, we will be highlighting even more conditions.
Every person living with a severe autoimmune condition has a
(01:04):
unique story to tell. That's why in each episode we'll
explore how each journey is unique and powerful, emphasizing how
community and care are essential parts of each experience. Will
also highlight the importance of self advocacy and support. Today's
episode will focus on MG, but throughout our second season,
(01:24):
we'll also hear from people living with conditions like chronic
inflammatory demyelinating polyneuropathy or CIDP and more. To kick off
the new season, we'll hear from our first guest, Nicole.
As an epidemiologist, she began to research may aesthenia gravis
after the onset of her symptoms. She brought her concerns
(01:45):
to her ophthalmologists, who confirmed her suspicions and diagnosed her
with MG. As a wife and new mother, Nicole juggled
her MG treatment while holding focus on the health and
well being of her young child, using her knowledge of
public health to navigate her life postpartum. Her story is
one of resilience and compassion. This episode contains references to
(02:08):
postpartum depression and other mental health concerns, so please take
that into account before listening. Hey, Nikole, thank you so
much for joining us today. As somebody who's trained in
public health myself, I'm really interested in getting your story
and understanding how your background also has informed your approaches
(02:33):
to dealing with NJI. So let's start at the beginning,
When did you know something was wrong? What were some
of your early symptoms, and what was that path to
diagnosis like for you? Right?
Speaker 2 (02:44):
So it was May twenty twenty one. I woke up
one day and I just had some blurry vision and
I was like, great, my lasi's going bad. I had
been doing a lot of work looking at screens.
Speaker 1 (03:00):
Oh.
Speaker 2 (03:00):
I was just like, okay, I need to just rest
my eyes this weekend, and I got some like blue
light glasses, thinking like you know, I'm just it's too
much screen time.
Speaker 3 (03:10):
Did kind of like a screen.
Speaker 2 (03:11):
Cleanse that weekend and it went away after a couple days.
Speaker 3 (03:16):
So I was like, great, it must have been that
it worked.
Speaker 2 (03:18):
And then about three months later it happened again, significantly
worse and it did not go away. And then in
addition to the blurry vision, I started having double vision,
and so doing what I do as an epidemiologist, I
was like furiously researching, like I kind of had my
checklist of things that I wanted to talk with the
(03:41):
doctor about. Once I got there, the ophthalmologist was like, yeah,
I agree, it could be the myocenia MS brain tumor.
Speaker 3 (03:49):
I was like, oh, great, all horrible things.
Speaker 1 (03:52):
Wow.
Speaker 2 (03:52):
So yeah, thankfully they took it really seriously. I went
that same day to do blood work. I went the
next day to get an MRI. By Friday, I got
the blood work back and it was positive for.
Speaker 3 (04:03):
The mycenia antibody. So I got set up with a
neurologist in town and the fun journey began.
Speaker 1 (04:10):
Wow, I mean, and so quickly too, you know, to
get to that point.
Speaker 2 (04:15):
Yes, And I'm so grateful for that because I know
it can take a lot of people years and years
and suffering. I was lucky enough that it started with
my eyes and it was very abnormal. Not just the
eyelid drooping or weakness in that kind of area. It
was pretty significant where you know. I went to grab
the door handle at the eye doctor's office, and my
(04:36):
husband's like, it's all the way over there. I was like, oh,
oh okay, Like I couldn't really, I couldn't function with
how bad it was.
Speaker 1 (04:44):
Nicole's discovery is amazing, but it also highlights one of
the first hurdles of living with an autoimmune condition, getting
a diagnosis. Ophthalmology is a specific branch of medicine for
eyes and vision with the presentation of ocular issues a
hallmark of ngson, Nicole was set on the proper path
to specialized care. Yeah, and so the opthalmologist was the
(05:06):
one to confirm your diagnosis. And this is really the
first time on the show that we've discussed how an
eye doctor can help to understand how to get a diagnosis.
So how informed were they about this condition and did
they refer you to a specialist after?
Speaker 2 (05:21):
Yes, so they did have a neuroopthalmologist on staff, so
they were kind of familiar with it. I was referred
to a neurologist that also specializes in neuroopthalmology. And once
I was in I've had, you know, no issues as
far as maintaining that and doing what I need to do.
Speaker 1 (05:39):
So tell me what was the immediate impact on your
life once you did have that diagnosis of MG.
Speaker 2 (05:45):
It was definitely a big shock, just a lot of processing.
Speaker 3 (05:52):
And knowing that.
Speaker 2 (05:55):
Being so young, it's you know, my whole life is
going to be very different from how I thought it
was going to be. I had my son at the
time was like a year and a half. Just thinking
about what that would mean for growing our family in
the future and being able to care for him.
Speaker 3 (06:15):
At that point. It was just ocular miasenia, so.
Speaker 2 (06:20):
Overall manageable, but it caused me to be very dependent
on other people. I had to have my husband drive
me everywhere for a long time if.
Speaker 3 (06:29):
It was something with work.
Speaker 2 (06:31):
Thankfully, I have kind of like a counterpart that does
a different department, but she has to drive to some
places as well.
Speaker 3 (06:37):
If I needed to drive, I would.
Speaker 2 (06:39):
Be like, hey, want to come with me tag along
and make it part of your protocol for the year.
Speaker 3 (06:45):
Made it work. My mom is a nurse.
Speaker 2 (06:48):
It's just helped to kind of talk through things with
her and work through that. And I think I just
killed it with positivity and just was like, Okay, we're
just I have no choice.
Speaker 3 (06:59):
I have to move forward.
Speaker 1 (07:03):
Nicole is the mother of two young children. Her son,
now three and a half, was born before her MG diagnosis. However,
during her second pregnancy, Nicole needed to be considerate of
her MG when preparing for her daughter's birth. Speaking of
moving forward, then you had a very different experience with
your daughter, who was about five months old.
Speaker 3 (07:25):
Now she just turned six months last week.
Speaker 1 (07:29):
Yeah, excellent, And so can you tell us what it
was like being pregnant and giving birth while also managing
your MG.
Speaker 2 (07:36):
Yeah, yeah, she was very planned. We wanted to make
sure that I took all the precautions I could beforehand,
So I got the thymectomy. I waited till I got stable,
got the ok from the neurologist and my obgun and
said okay, let's just go for this and hope knowing that,
I think underlying the whole time was when is the
(07:58):
other shoe gonna drop that it could get worse again?
And is something going to happen to her? Was I
think my biggest concern.
Speaker 3 (08:04):
So it was.
Speaker 2 (08:05):
It was definitely a little harder as far as I
felt a little more detached throughout the pregnancy of like
if something happens, and then just the worry underlying worry.
My body definitely knew before I did that I was pregnant.
That's when it started to expand beyond ocular. I got
really bad morning sickness, which really was all day sickness.
Speaker 3 (08:28):
I woke up not.
Speaker 2 (08:29):
Being able to chew. It was a vicious cycle. Could
not eat to combat the morning sickness. So and it's
like another med and it's just ironic. How like in
my first pregnancy, I was like, augh, I'm not even
gonna take a tile and all, like I don't need it,
I'm fine. And here I am like chugging pills every
couple hours and then adding another one overnight.
Speaker 3 (08:47):
But that seemed to do the trick.
Speaker 2 (08:48):
Got on some meds, you know, add onto the list
for some morning sickness, and things were great up until
about middle of the second trimester. Of course, right before
I'm going to like a really big conference for work
out of state, I started having a flare up ocular
flare up again. And I had my routine at that point,
so it wasn't horrible, but you know, it was an ideal.
(09:10):
I had things I wanted to do, and I still
did them, just with a little bit of a wonky Yeah,
we made it work. I just listened to my body,
which is just hard being a young person of like
listening to when you need to slow down.
Speaker 3 (09:26):
I think it's really one of the hardest parts.
Speaker 1 (09:29):
And like you said, your body was already giving you
those signs even before the pregnancy tests were you.
Speaker 2 (09:34):
Know, yes, yes, and so I yes, my body knew,
my body knew. But I had been seeing specialists throughout
the pregnancy, and she was doing so well and growing
really well.
Speaker 3 (09:45):
And no issues.
Speaker 2 (09:47):
So I think I definitely started to feel a little
bit better about it, but it's always after but I
just kept positive and did the things.
Speaker 1 (09:54):
I wanted to do.
Speaker 2 (09:55):
Thirty five weeks pregnant, went to the Taylor Swift concert
and dance my butt off all night.
Speaker 3 (10:00):
It was amazing, It.
Speaker 2 (10:02):
Was worth it, and she was born like about a
week and a half later from that.
Speaker 1 (10:08):
And yes, fifties are unstoppable, I guess right, So yes,
listening to Nicole's story, I can't help but be reminded
of Jessica from Season one and the difficult pregnancy she experienced.
A twenty sixteen study published in the American Academy of
Neurology Journals suggested that women have an increased risk of
clinical symptoms of MG during postpartum. Additionally, the CDC reports
(10:32):
that one in eight women experience postpartum depression symptoms. With
her own postpartum diagnosis, I can only imagine what Nicole
learned about herself during that period. Let's talk a little
bit about your postpartum experience and how MG impacted that,
specifically talking about postpartum depression and as we know as
(10:54):
a significant concern for many mothers, How did you cope
with postpartum depression and managing your mayasthenia dress?
Speaker 3 (11:03):
Right, it was probably some of the darkest times of
my life.
Speaker 2 (11:09):
I had her on a Tuesday, which the labor and
the delivery part was a dream. Oh you know, she
came very very fast, unmedicated, you know, just wonderful. She
was an angel to me and has been since since then.
And so I went home feeling great, and basically by
(11:29):
that Friday, I was like, I can't I can't carry her,
you know, I was like something, something's happening. I can't
lift my neck off the bed. I'm just having a
really hard time moving my body. It just kept getting
progressively worse. And I asked my husband, I was like,
did I cry this much last time? Because I know
I cried a lot, but I don't think that I
(11:51):
cried this much. I just felt like I couldn't do
my job as a mother to do the basic things
of care for her and carry her. I mean, she
was only six pounds, Like how much more basic can
it get? So I think that really took a toll
on me as far as the depression. Knowing that the
myocenia was affecting me so much that I just couldn't.
(12:14):
I could not even do the bare minimum to care
for myself or for her. So I knew I needed
to get the depression in check and then worry about
the myocenia. So thankfully my obgui N had started two
week postpartum visits the week.
Speaker 1 (12:34):
Before, because those were some of the changes right.
Speaker 2 (12:36):
With yes, the rectation, I would have normally had to
wait till six weeks or like try and call and
hassle and whatnot.
Speaker 3 (12:42):
And I don't know if you have a child or
have had those.
Speaker 2 (12:47):
Questions asked to you postpartum in the office, you know
that they screened for depression and I was.
Speaker 3 (12:52):
Like in tears, like yes, all of them.
Speaker 2 (12:55):
And I was like, oh, yeah, this is this is
a problem. So they gave me a prescription for antidepressant
and within a week I.
Speaker 3 (13:06):
Was a new person.
Speaker 2 (13:07):
Wow, And realized that even before the miocenia, I definitely
had some underlying anxiety in general, and it really.
Speaker 3 (13:16):
Just took the edge off.
Speaker 2 (13:17):
That took the edge off the stress of the myocenia
as well. Empowering myself during my diagnosis of myocenia really
helped to like, this is not right, This is not
how I normally feel. This is abnormal, so I need
to do something about it.
Speaker 1 (13:34):
And by being able to be so sensitive to your
own body and your own feelings, you're able to then,
like you said, take that piece of you. That's like
I'm gonna take action exactly.
Speaker 2 (13:44):
Yeah, which is just something that now has come second
nature with the myocenia diagnosis.
Speaker 1 (13:49):
You just have to in terms of thinking about that
and listening to your body. What were the signals that
you saw that told you you maybe need to slow down?
Speaker 3 (14:00):
Yeah, it's hard.
Speaker 2 (14:01):
The key to my scene, they say, is like rest
and sleep and go slow. And when you have a newborn,
that's not like a setting that you can do. Yeah,
just hold on baby, hold on exactly. So I think
where it really hit me. I realized we were downstairs
and I was like, I can't get up off the couch.
My medication is not working and I couldn't stand up,
(14:25):
and I was like, you know what, I just need
to go to bed. Let's just get upstairs and we'll
deal with it tomorrow. And you know, on Monday, I'll
call the doctor that we need to get something drastic going,
and I fell going up the stairs, and that's when
it hit me. I was like, that's the first time
with this diagnosis that I ever was just like, I
(14:47):
don't want to die.
Speaker 1 (14:48):
Oh my god.
Speaker 2 (14:49):
That was probably the lowest point in my life to date.
My husband had to drag me to our room, up
into my bed, and the Angel of a Man, my
daughter formula for all her feedings at night, change her
I pirs stayed in her room so I could get
rest all night. I'm just forever grateful for him, my
supports system here at home, and everybody else, because that's
(15:12):
the only thing I could do is I just had
to stop and rest my body and let other people
take over, which.
Speaker 3 (15:21):
I never would have done before.
Speaker 2 (15:23):
I had no choice but to ask for help and
be blunt about it what I needed and feel comfortable
doing it.
Speaker 1 (15:33):
We often say that chronic illnesses don't have to define you,
and while that might be true, they do change you.
Learning to ask for help can feel like a complete
shift in identity.
Speaker 2 (15:46):
I've always been very independent, very just like to kind
of do things on my own, but I had to
really hand the reins over a lot more than I
ever had in my life, and it was nice to
know that I could just Okay, relax and he's got this.
Speaker 3 (16:02):
I don't need to be one.
Speaker 1 (16:04):
Hundred percent all the time and to know that that's okay,
and that's kind of how it has to be.
Speaker 2 (16:10):
Yes, Yes, but I think it just had that had
that silver lining effect of like making me a more
relaxed person in general, not so uptight about everything, where
I'm definitely more No one in my family would ever
describe me as go with the float, that's for sure.
Up until this point. Okay, they're like you maybe a
little too go with the flow now, and so I'm
(16:32):
just you know, we're just going with it and that's
all I can do.
Speaker 1 (16:37):
We'll be back with more untold stories after a quick break.
As a global immunology company committed to improving the lives
of people living with severe autoimmune conditions, our Genics is
dedicated to serving the Mayasthenia gravis or MG community through
MG United. MG United was created by our Genics to
(17:00):
support those living with MG and their caregivers by providing
the latest information, resources and support to address the unique
ways MG can affect their lives. Wherever you are in
your mayasthenia gravist journey. MG United wants to help make
today a better day. For more information about MG United,
(17:21):
visit mgdash united dot com. And now back to untold stories.
You talked about what it was like to learn how
to ask for help, especially as a young woman. What
were some of those challenges of leaning on others or
giving up part of that independence.
Speaker 2 (17:41):
It was just things that you never thought you would
have to ask for. I had an amazing friend come
over just to blow drow my hair because I had
used the energy I had for that day to wash
it for the first time in probably a week. And
she's just like, yeah, I'll come over and blow the
things you would never think to ask, and you would
feel bad to ask. People brought so much food and
(18:03):
just sat with me, just to be with me, because
I just felt an isolation that I had never felt before,
even though my husband worked from home. When he was here,
it was just asking people to come over, Hey, just
come on.
Speaker 1 (18:14):
Over, and they did.
Speaker 2 (18:16):
Family, and they did, and they did, and that's when
I realized they want to be there, they want to
help me, and I would just always have so much guilt,
especially like if it involved like a financial ask like
I had no desire to pump whatsoever in the beginning.
I just felt like that's the last thing I want
to do. And my aunt was like, I'll you know,
(18:36):
if you need something, let me know. I was like,
you know what, I am going to ask you for
a portable pump. That way I can sit comfortably, I'm
not attached to the wall, you know, things like that.
We hired my doula postpartum awesome, to help with my
daughter's visits while I went to medical appointments or just
took a break, and she was just so amazing.
Speaker 1 (18:57):
For all of that. Duela is really our angels, I
know are.
Speaker 2 (19:02):
She is just wonderful and she normally doesn't do postpartum
visits like that, but I think I was a pathetic enough.
Speaker 3 (19:09):
Situation to like she probably is. She probably could use
some help.
Speaker 1 (19:13):
That's part of their scope of practice.
Speaker 2 (19:14):
It's okay, right, yeah, But thank goodness, my nerologists really
listened to me after that falling situation. I called him
as soon as their office opened after a Memorial Day
and I was like, I need I need something urgently,
Like I don't want to go to the er. It's
not that bad, like I can breathe, okay, but if
I don't get something now, it's gonna be bad.
Speaker 3 (19:37):
We did plasmaphrisis. I did that for the first time.
Speaker 2 (19:40):
After four days, I cannot even explain, like I forgot
what it was like to feel normal and to not
have to think about this illness every day.
Speaker 3 (19:51):
I went medication free for like a month. My life changed.
Speaker 2 (19:54):
I could carry my daughter, I went out and took
her places, even just going for a walk. Before I
would have been like huffing and puffing trying to catch
my breath when I'm normally a very active or I
used to be a very active person.
Speaker 1 (20:09):
Plasma paresis is a therapeutic intervention method that uses a
centrifuge or filtration system to remove and replace blood plasma.
The exchange helps to improve muscle strength within days, but
usually only lasts for a few months. These treatments would
be vital for a mother of a newborn who consistently
needs to be held at all hours of the day
(20:30):
or night, and anyone who's parented a newborn can tell
you that there is simply some exhaustion that no plasma
transfer or pill can counteract. Obviously, parenting while dealing with
chronic illness can be demanding. How has your diagnosis affected
this parenting journey that you're now on. What works for
you for managing both your health and responsibilities as a mother.
Speaker 2 (20:54):
For managing my limitations with my older son, I think
he's starting to unders sand now. He is three and
a half, so I think he's understanding just the concept
of Mommy needs to rest her body, because I tell
that to him too. You know, I think it's time
to rest your body. Let's go take a nap. So
he understands of like, yeah, my body's feeling tired. But
(21:15):
there are times where yeah, I have to say, okay,
dad's got to wrestle with you. I can do this craft,
but not that negotiating. I can't carry you down the stairs,
but I can hold your hand. He's very understanding of that,
and I try to say, you know, tomorrow, you know,
we'll do this, but today, you know, mommy's a little tired.
With my daughter, we really had that rough start, yeah,
(21:36):
and I did not have that immediate connection with her.
But through work, I got donated an extra two months
of leave from your coworker, from my coworkers, and I
was like, oh, my gosh, I didn't know this. Many
people liked me, and it just I was so grateful
because it allowed me to kind of get a redo
(21:57):
of that first month that was just and I felt
like I couldn't enjoy the experience of being her mom,
and it allowed me to get some time back and
really just enjoy our day to day.
Speaker 1 (22:11):
But we make it work.
Speaker 3 (22:12):
It's just I let him know what I can.
Speaker 2 (22:14):
Do in the moment, and he seems to just kind
of go with it.
Speaker 1 (22:18):
It's such a great way to like build empathy and
for him to like really early on, just to understand,
you know, like you said, other people's feelings, other people's limitations.
Speaker 2 (22:28):
Yes, and I have heard that from his teachers. He's
just the sweetest little boy. And I'm so grateful that,
you know, he's just kind of going with it.
Speaker 1 (22:37):
It's just the cards were doubt. Yeah, and I'm sure
he's a great big brother too. He Uh.
Speaker 2 (22:42):
The love he has for this girl just melts my heart.
It's going to be her protector for sure, Oh for sure.
Speaker 1 (22:49):
Sweet Nicole's work as an epidemiologist is mostly centered around
food and water born diseases. While not doctors themselves, epidemiologists
study incidents that lead to the cause and spread of disease.
Her medical background also gave her advantages in working with
her doctors. For example, when most people experience a symptom,
(23:10):
they go to the emergency room, but Nicole knew immediately
her double vision was caused to see an ophthalmologist. Even so,
there are some things her training could not account for.
What are some aspects of this journey that you could
not have pictured having navigated without this background that you had.
Speaker 2 (23:30):
I think feeling comfortable talking to medical providers and just
knowing how to speak to them, kind of speak their
language is definitely a privilege that I have having the
background in public health, knowing how to read my own
medical records and knowing what they mean and my own
lab results and knowing for the most part what they mean.
(23:52):
I'm not a doctor, but you know, I've seen more
records than I would like to in my life. But
just kind of having at least a better understanding procedures
and different things like that has really been very beneficial.
Speaker 1 (24:06):
To give you that context. It sounds like, right.
Speaker 2 (24:09):
Yes, m mmm mm hmm, that context to know what's happening.
Speaker 1 (24:13):
That's it, right, That confidence and the ability to see
that these physicians are your peers.
Speaker 2 (24:17):
Right exactly exactly, And I think that I don't think
it should be like this, but I think it lends
them to them once.
Speaker 3 (24:25):
They find out what I do in my profession.
Speaker 2 (24:29):
I think explaining things a little more in medical terms
and not trying to make it more basic and really
talk to me as a counterpart.
Speaker 1 (24:41):
Yeah, and it definitely affects you, like you said, and
how you're able to address that information as well to
understand right, and as we know, living with a chronic
condition can be emotionally challenging on an individual level. So
how did your public health training recognizing looking at the
big picture is what we're kind of trained to be
able to do, how did that inform your approach to
the mental and emotional aspects of living with my aesthenia gravis.
Speaker 3 (25:05):
Just the big picture.
Speaker 2 (25:06):
I was like, I have to do something to I
can't fix this, I can't cure this, and you know,
I'll take my treatment day by day, but I want
to try to be engaged, be involved, or be as
helpful as I feel I can with the limitations I
have of working full time to children, you know, just
regular life. So I do participate in like market research
(25:32):
to provide information to hopefully benefit others. And that's why
I wanted to, you know, talk on this podcast to
hopefully help somebody, because I didn't find a ton of
information when I was pregnant, and it's a small margin
of people that have the mycenia, but then to get pregnant,
it's an even more narrow margin.
Speaker 3 (25:52):
And you can't never have too much information as an
empty malgy.
Speaker 1 (25:55):
Yeah, exactly right, and to be able to sort through it.
And it sounds like also in particular the post part
of it experience too, you know, exactly to really know
like the day to day what is that like?
Speaker 2 (26:05):
Yeah, because I was posting on like a Facebook group
for pregnant women with my CDIA, like what can I
expect and what you know?
Speaker 3 (26:11):
Any ideas or and what you know?
Speaker 2 (26:13):
And so I shared my story on there and what
happened after to hopefully help others at least guiding.
Speaker 3 (26:20):
I know it's very unique person to person.
Speaker 1 (26:21):
But I mean, this is what goes back to thinking
about public health, right, is that we're dealing with these populations,
but yet when we have these conditions that you know,
we don't necessarily study because they perhaps affect fewer folks.
But for the people who are going through it, it's real.
Speaker 3 (26:37):
It's their world.
Speaker 2 (26:38):
Yes, yeah, it's our whole world. So I love seeing
now that there's more research out there on it. I
found the podcast and I was like, oh my gosh,
people are talking about this, and I was like shared
it with everybody that I knew. It was like, you
all need to listen to this. Everybody needs to know
because I know I'm one of many who probably have
(26:59):
str silence for too long. I mean other than my
close family and coworkers that I see regularly. This is
my coming out moment here. This podcast is going to
be sharing it, you know, with the world and as
they say, Facebook official, you know kind of thing.
Speaker 1 (27:17):
Welcome to the other side, Nicole.
Speaker 2 (27:19):
Yes.
Speaker 1 (27:24):
According to research conducted by Johns Hopkins Medicine, MG is
more likely to occur in young women between the ages
of twenty and thirty and older men over the age
of fifty. While there isn't a conclusive number of women
with MG, family planning is a very important life decision
women must consider alongside their MG diagnosis. One of the
reasons why this series was created was to help highlight
(27:47):
and empower different autoimmune communities. At that intersection are parents
learning to plan for families, manage expectations, and even grow
a chosen family. You shared some really powerful moments about
MG and how it dramatically affected you shortly after the
birth of your daughter. Was there a particularly low moment
(28:09):
of dealing with postpartum that you feel comfortable sharing.
Speaker 2 (28:13):
Yeah, I mean, obviously aside from the physical things and
just the emotional of like is she better off without me?
Do I deserve her? Like she's perfect? She started sleeping
through the night, I like three months, wow, and no,
I was like, well, she knows, because if she'd done sleep,
(28:35):
you know, she's gonna kill me.
Speaker 3 (28:37):
So I just.
Speaker 2 (28:39):
Was like I had very low feelings of like I
don't even deserve her, Like she deserves such a better.
Speaker 3 (28:45):
Mom who can care for her.
Speaker 2 (28:47):
And that's what my therapist likes to call stink and
thinking and so to kind of undo myself from that
and like call myself out.
Speaker 3 (28:56):
Nope, that's not helpful. Yeah, she is right where she belongs.
Speaker 1 (29:01):
And she's got the perfect mom for her.
Speaker 2 (29:04):
Yes, exactly, There's no better mom for her than me.
So that was probably the lowest point, but to be
a little vain for a minute. The hardest part, other
than caring for my children, has been not recognizing myself
in photos.
Speaker 3 (29:20):
I cannot smile like I used to. I don't have.
Speaker 2 (29:23):
Any pictures from my baby shower saved or printed anywhere
because you know, when eye was this way and I
couldn't smile right, and so I just don't like looking
at them.
Speaker 3 (29:34):
And my mom will never let me live this stone
for talking about it.
Speaker 2 (29:39):
But one time in two thousand and seven, Taylor Swift
told me I had a nice smile. Oh, and so
that gets me down all the time of like, ough,
I can't smile like that like how I used to.
So it's just the little things too that really had up.
Speaker 1 (29:55):
Seems to me, I don't know much about Taylor Swoop,
but it seems to me that she would love you no.
Speaker 2 (29:58):
Matter what I I would think, So you know, I'm
fully committed. So yeah, it's just it's a full range
of little minute things like that all the way to
the full gamut of inadequate motherhood, you know. And I'm
so grateful that I asked for help and it was
able to move past that depression, not to say that
(30:22):
it's perfect. There are days that I cry. It's just
a day by day journey and making the best of it.
I definitely through that have realized I need to do
the things when I can and make the most of
the time with my family. We're just doing as much
as my can, visit friends that I haven't seen since
(30:44):
before COVID. I was like, I'm going to do it.
I'm going to regain my postpartum and you know, claim it.
Speaker 1 (30:51):
Yeah, own it exactly, and look at you and you're
absolutely doing it. And Nicole, I really appreciate this time
that you gave us today and to share your story
and to step on this side as you mentioned of
really sort of being public about your MG journey. And
I know that what you shared with us today is
going to help a lot of people.
Speaker 3 (31:11):
Well, thank you so much.
Speaker 2 (31:12):
That is like I'm going to be brought to tears
back because that's all I ever want. Like I obviously
don't do the job for money. I do it, you know,
because I enjoy it and it's a passion and to
help people and to educate people. And if I can
even help one person with this information, I'm beyond grateful.
Speaker 1 (31:32):
Beautiful it really is public health work. I didn't think
about it like that, but it really really is. By
sharing this, Thank you so much, Nicole, Thank you. It
was so great listening to Nicole talk about her experience,
and I especially love being able to nerd out with
her as a fellow public health researcher. Nicole's story underscores
(31:53):
how knowledge helps with understanding autoimmune conditions, but it doesn't
remove the emotional trauma of dealing with them. Experiencing these
emotions is such an important part of coping with MG
or any other autoimmune condition. Thanks for listening. We'll be
taking a short break through the new year, so join
us again in three weeks. On January seventeenth. Untold Stories
(32:18):
Life with a Severe Autoimmune Condition is produced by Ruby's
Studio from iHeartMedia in partnership with Argenix, and hosted by
me Martine Hackett. Our executive producer is Molli Sosha. Our
EP of post production is Matt Stillo, along with supervising
producer Sierra Kaiser and post producer Sierra Spreen. This episode
was written and produced by Tyree Rush
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