March 3, 2026 • 34 mins
There are so many things falling apart right now and if you’re someone like me who likes to:
- Hold things together
- Bring things together
- Keep things together
This time is probably uncomfortable at best and maybe painful at worst.
I’m today’s episode, I’ll share with you something that is currently falling apart in my world and share how I’m coping.
Not because I have the answers. But because sharing stories is how we survive.
I hope you’ll find the courage to share yours too.
What’s falling apart for you?
Host: Ally Fallon // @allyfallon // allisonfallon.com
See omnystudio.com/listener for privacy information.
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Episode Transcript
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Speaker 1 (00:00):
Hi, and welcome to you to write your story pipecast.
Good job.
Speaker 2 (00:05):
Really pick up the pieces of your life, pull them
back together with the word you write. All the beauty
and peace and the magic that you'll start too fun
when you write your story. You got the words and said,
don't you think it's down to let them out and
write them down and cover what it's all about and write,
(00:30):
write your story. Write you write your story.
Speaker 1 (00:35):
Hi, and welcome back to the Write Your Story Podcast.
I'm Ali Fallon. I'm your host, and on today's episode,
I'm not really sure how this is going to go.
I don't know exactly how I want to talk about
this or what I want to talk about, but it
feels like the only possible thing that I could talk
about today on this episode because I've been going through
a variety of really confusing health challenges recently, and when
(00:56):
I was trying to think about what I wanted to
record today, I'm like, for better or worse, Like this
could just be my toxic trait. But it just doesn't
feel good to me or write to me to sit
here and be like, Okay, I'm going through this really
horribly stressful time. It's all I can think about my
brain is hyperfixated on this thing, and yet I'm going
to sit down and be like, what could I teach
today about how to write a book? Because I could
(01:18):
think of any number of topics that I could record
this episode about. But the fact of the matter is
it just doesn't feel authentic or in alignment. And maybe
that's my own issue that I need to work out
in therapy. That's like, doesn't always have to be in
alignment with your life, Ali, you can just you know,
record a podcast episode that's about a topic that's not
perfectly in alignment with your life. But for better or worse,
(01:39):
the fact of the matter is, I really feel like
part of my mission here, part of my essence, part
of what I do best, is to tell the truth,
to just talk about what's going on, to say things
as they are, and as scared as I am, to
talk about these health challenges because the more I talk
about it, the more real it feels. I also feel
like there's probably an elm of healing in it for me,
(02:02):
and that's one of a couple of reasons why I
would really like to challenge myself to talk about it,
because I can just feel that it's probably going to
be healing for me to put language to this, and
that's all what this stuff that we do, like is
all about.
Speaker 2 (02:17):
That.
Speaker 1 (02:17):
It's so silly sometimes that we make it about other stuff.
We make it about, like, you know, growing this huge
platform or being some kind of public figure or whatever
it is. Sometimes we make it about helping other people,
which is nice, but it's also about I believe. This
is my belief and it always has been from the
(02:37):
beginning of my public life, that it really is about healing,
and that as we heal through telling our own story,
we also invite others into community with us who heal
simultaneously with us, because healing is not an isolated event.
It's not something that happens to just one person, and
happens to all of us collectively at the same time.
(02:59):
And I said in last week's episode that liberation is
my liberation is tied up in your liberation. That's not
my idea. I've heard that elsewhere, and actually I don't
know where it originates, but it's not an original idea
from Ali Fallon. I'm just reiterating that my liberation is
tied up in yours, and so until all of us
are free, none of us are really free, and for
(03:19):
that reason, I want to take this opportunity to talk
about what's going on with me. If you're new here, welcome,
Welcome to the podcast of an Enneagram for kidding, not kidding,
because yeah, one thing that you'll know about me, or
learn about me really quickly is that I have no
issues kind of cutting straight to the heart of a thing.
(03:41):
I tend to skip past nicetaes. I'm not really a
small talk kind of a girly and so sometimes in
public settings at a party, at a dinner party, for example,
I might be like, let me read this poem. It
really meant a lot to me. I'd love to share
it with the group, and everyone's like whoa, whoa, Like
what you just took us to a place that we
were not trying to go at this party. And so
(04:04):
I know this about myself. And if you are listening
right now, and you're a new listener and you're just like,
I don't really know that I want to go on
a long wild ride with you right now, then totally understandable.
More power to you. Hit pause or go to another episode,
or you know, find another podcast that brings more like well,
I was going to say, brings more lighter positivity, but
(04:25):
hopefully I do bring some light and positivity also into
the space. But one of the qualities about me, for
better or worse, that is just part of who I am,
is that I am going to tell the truth and
the whole truth, and I'm going to just tell it
like it is, exactly like it is. And the fact
of the matter is, I'm in a really heavy time
in my personal life right now. I was telling my
husband earlier today that this, these health challenges are the
(04:48):
last in a long list of challenges I faced in
the last six years. And I know I'm not the
only one. I know that even my challenges, it's poinitless
to compare them, But if we were to sit them
down and compare them to what other people are facing
in the world, they pale in comparison to what many
other people are facing. So this is not me saying
that my problems are somehow more important or trying to
(05:10):
center myself. It's just more saying like, it's been a
long line of really difficult things that have happened, and
this most recent one feels like the straw that has
broken the camel's back from the standpoint that like, I've
been coping pretty well until about now. And this is
one of the things that I want to talk about
on the episode today is maybe this is part of
the point. And if this resonates with you, it resonates
(05:30):
with you, and if it doesn't, then you can leave it.
But maybe this is part of the point, is that
you've been coping really well with all of the challenges
that have come your way, and maybe it's time to
stop coping so well. And I don't mean that in
a dark way. I don't mean, like, you know, throw
away your coping mechanisms and just like go hide under
the blankets, although maybe do that for an afternoon, you know,
(05:51):
Like this weekend, in the midst of everything going on,
I was just like, I'm so sick of being so
healthy and feeling so sick, Like I'm so tired of it.
I go to yoga, I don't drink, I don't smoke,
I don't do any drugs. I pretty much eat gluten
free and dairy free. I eat very healthy. I think,
you know, critically about everything I put into my body.
I'm taking all the supplements, I'm exercising all the time,
(06:13):
and here I am with these health challenges. I'm sick
of it. I want to order a pizza and a coke,
and I want to sit in my bed and I
want to watch trash TV all weekend. So that's what
I did, and it was great, and I highly recommend
that if that's something that appeals to you, or maybe
you have your own version of that, So maybe it's
something different where you're like, I'm at the end of
my rope. I can't hold it together anymore. Maybe it's
(06:34):
time for us to stop holding it together. So this
episode is my earnest attempt to stop holding it together,
to stop pretending like everything's fine when I don't feel
like everything is fine. And I hope that in sharing
my story that you find some points of connection that
maybe make you feel a little bit less alone. Maybe
(06:54):
you've been going through your own set of challenges, health
challenges or otherwise, and maybe hearing me share my story
gives you some courage to share your story with one
other person, or with ten other people, or at your
Bible study or at your book club or on social media.
Here's another thing is I've I have mentioned this and
by the time you hear this episode, hopefully you will
(07:16):
see that I've started to share this story in little
drips on Instagram. It's a challenge that I've given to
myself in conjunction with my friend Ruthie Lindsay. I feel
like this is all just the timing is all synchronous.
A couple of weeks ago, I went to dinner with
my friend Ruthy Lindsay, and she and I were talking
about Instagram, and I was just saying, how how weird
(07:38):
and bizarre it is that on some days if you
ask me about Instagram, I'm like, Instagram's a time waster.
It sucks the life out of me. Nobody should be
on Instagram. It's a powerful drug that should not exist.
There's nothing good that can come out of Instagram. Delete
it forever and your life will be better. And then
other days you could ask me about Instagram and I'm like,
Instagram is a powerful way to bring people together in community,
(07:59):
Like what an amazing apportunity for us to share our
stories and to show up and be honest about what
we're really going through, and to be connected to information
and to resources, and to get inspired and to have
ideas and to be reminded that we're not alone in
the world. And you know, as a mom of little
kids like that can feel so isolating sometimes because it's
harder to get out and go places. And now I
(08:20):
can connect with other moms who are going through similar
things to me. And I've been going through this journey
trying to get pregnant, and I can connect to other
people who are also trying to get pregnant, and I can,
you know, I have these moments of connection with them,
even though we've never met in real life and we
don't know each other. And like, what an amazing tool
that we have at our fingertips. And I was thinking
this earlier today, even about my phone. Like, on the
(08:41):
one hand, like my phone is just like, ugh, my phone.
It gets in the way of every good thing in
my life. Get out of my face my phone. I
hate my phone. I'm always on my phone. It's so addictive.
I can't, you know, get myself to just walk away
from it. And on the other hand, like my phone
is this portal to all the people love me, and
(09:01):
to my nieces and nephews on the other side of
the country, and to people who are checking in with
me and asking me how I'm doing. And again to
more resources and to access and power, like these things
are what we make them to be. And so going
back to the Instagram thing, I Ruthie and I were
talking about this a bunch of dinner and she and
I both were like, man, I've either been thinking like
(09:23):
I need to quit Instagram or I need to like
really challenge myself to start showing up in truth on Instagram.
And I do show up in truth on Instagram. But
there's also a lot that I hold back for good reason.
You know, I've had like wisdom like wise reasons to
hold back some information on Instagram. It's I don't know
that it's necessarily wise to just like share everything from
(09:44):
your life on there, although maybe I'm wrong about that too.
I have no idea. My point being, I feel myself
holding back on Instagram in certain ways, and I think
a lot of it has to do with a fear
of being really seen. And I know that I share
really honestly here on the podcast, and I have a
talked about this health journey a lot, but I've talked
about it some. I've talked about a lot of what
(10:04):
my family and I have been through in the last
six years. So I know that I'm showing up in
some places. But man, there's something about Instagram that just
feels really, really really exposing to me. And I had
this experience the other day where I shared a quick
little clip from being in the er with my husband
and just said something like, you know, when you're in
the er four times in six months, it's going to
(10:26):
really matter who you married. And I'm just so grateful
for a husband who's so steady and has a good
sense of humor and is strong and stands by my side.
And what an amazing gift it is to hold this
man's hand kind of a thing. And I just got
this flood of like love and support and prayers and
all the things, and I was completely overwhelmed. And I
(10:47):
realized in that moment that really my biggest fear about
being on Instagram and about really showing up and showing
my true self there is not about the haters, although
there is some of that. There is definitely like a
I've watched people will get, you know, It's like a
King of the Hill kind of a situation, where like
when someone shows up in their fullness, it can be
(11:09):
very triggering for people. And so I've watched my friends
and acquaintances, I'm people who I also don't know. In
real life, I've watched people show up in their fullness
and just get utterly attacked, and so there is a
fear of that happening. But I think what I realized
is I also have this fear of showing up in
my fullness and being fully received, Like what like that
(11:29):
could happen, Like people could stand by me and love
me and send me love. And now I'm the center
of attention, and I feel nervous that I'm centering myself
and I'm taking up too much space and I'm a
drain on the community and I'm not you know, like
I want to be a gift. I want to be giving,
But in order to be someone who gives, we also
have to be someone who receives. And so when you're
in a time of need, do you allow yourself to
(11:50):
receive from others? It can be really, really uncomfortable to
receive from others, and it's one of the reasons why
we avoid showing up in our fullness. But this for
me feels like a season where I get to practice
being in a posture of receiving, where I get to
text friends and say hey, I really need your prayers.
I don't know what's going on. I'm scared, I don't
(12:12):
know what to do. Can you help? Can you pray?
Can you come over? Can you drop off food? Can
you come take my kids? Can you just sit with me?
Can you hold space while I cry? And that's a
really uncomfortable place to be for me, and maybe it's
uncomfortable for you too. So that's the first kind of
takeaway from all of this. But basically the story, I'll
(12:32):
tell the story in fullness here. I think I'm going
to tell it in a few different kind of like
episodes on Instagram, just because of the platform, there's limitations
around the length, and I know when people are on Instagram,
they're not looking to sit down and listen to a
forty minute episode like you are when you're listening to
a podcast. So I'll tell the story in full here
so you can hear it in full, and then I'll
(12:53):
tell bits and pieces of it on Instagram as well.
If you don't already follow me on Instagram, it's Ali
Fallon on Instagram. I'd love to see you and hear
from you there. Podcasts are interesting because, like you can
leave a review, but otherwise it's not really like a
two way conversation, whereas Instagram is a two way conversation,
and I love having a two way conversation. It's much
more exciting to me to have a two way conversation
than it is to just sit here talking into a microphone.
(13:15):
So if you don't already follow me on Instagram, find
me over there at Ali fallon A L L y
F A L O N and I'll put that in
the show notes. Okay, enough stalling, I will tell the
story of what's been happening to me. So the cliff
(13:39):
notes version is that we don't really know what's going on,
but we do know that last fall I presented to
the er with what seemed like a cardiac concern. At first,
I had just had a miscarriage. This is my second miscarriage,
and I was having cardiac symptoms. I was having chest
pressure and pain. I was having numbness at the time
(14:02):
in my fingertips and in my feet, but I wasn't
really paying much attention to the numbness because I was
mostly focused on the fact that I was having chest pain.
So I come into triage. They do any KG. The
EKG looks normal, but they, of course, because it's chest pain,
they rush me back and do a full work up,
a full evaluation. The doctors and nurses that one thing
I want to say about this is as frustrating as
(14:23):
this whole process has been, the nurses and doctors themselves
are absolute angels on earth. I mean, I want to say,
especially the nurses, but like lots of the doctors too,
have been amazing. And when you give their brains a
problem to solve, I love watching them go like we
are going to get to the bottom of this, and
they have worked so hard to try to solve this
problem for me. So every single individual who I've encountered
(14:48):
has been amazing. The system itself is extremely broken, and
that's one of the things that I would love to
talk about. The system. Our medical system in this country
is so just ft, and there's so many problems with it.
So many things fall through the cracks, and I just
don't think it's equipped. The system itself is not equipped
to really take into account mind, body, spirit and everything
(15:11):
that's going on and to really find solutions or even
find answers to the complex problems that so many of
us are facing. So back to the story, I'm in
the er, they do a full work up. They basically
tell me nothing's wrong with you. Everything's fine. The only
thing that we can find off in your vitals is
you might have a little bit high blood pressure, but
of course you do because you're very stressed. So you
(15:34):
can go home, and you know, one of the nurses
said to me, like, it's very stressful to lose baby.
I know I've had a miscarriage before too. That's probably
what's happening, is you're just having some anxiety. So I
go home and wake up the next day, I'm still
having symptoms. Symptoms seem to be worstening and persisting. And
one of the symptoms that I was having that was
really concerning was dizziness and virtgo. My vertigo is so
(15:58):
bad that it would wake me up from a dead
sleep in the middle of the night. I would be
laying there and all of a sudden, I would wake
up out of a dead sleep and just feel like
I had I was like being swallowed up into this
big hole. Or I would feel like I was like somersaulting,
like falling from a high height is how it felt.
And I was panicked that I was dying. So then
(16:19):
the second day, present to the er with same symptoms.
They do a similar workup, similar conclusion. It's like, you
must be really stressed. You must be, you know, having
a hard time your your body's trying to catch up
to your mind. Your mind's trying to catch up to
your body. Kind of a thing. Let's write you an
anti anxiety med Let's write your script for some anti
(16:39):
anxiety meds. So they send me home third day, still
having the same symptoms. I call my Obi. I'm like,
I don't know what to do. I'm scared, I don't
know what's going on. I still feel terrible. She's like,
I hate to tell you this, but you got to
go back to the er, and I'm gonna call them.
I'm going to tell them that you need to be
admitted to the hospital. So I go back to the
(17:00):
r third night. I'm embarrassed at this point because I'm like,
I know y'all have already done, you know, every single thing,
and all my vitals look normal, but I just truly
don't know what's going on, Like something is not right
in my body, and I just need to we need
to look at it further. So my wonderful Obi, I
(17:21):
love her so much. She calls the hospital, she makes
sure I get admitted, she checks in on me. She
calls her friend who's a cardiac specialist, sends the cardiac
specialist to me. They do a full workup on me.
They order a CT scan with contrast we I don't
even know like the every test that they could do,
they did every level they could check, they checked. I
(17:43):
stayed in the hospital overnight, and still nobody can find
anything wrong with me. And by that third night, after
the third time that I had presented to the er
and then stayed overnight in the hospital, now I'm just like, Okay, well,
maybe everyone was right. Maybe I am just really stressed.
Maybe that's what's going on. So they send me home
(18:06):
that third time from the hospital and I do a
follow up with the cardiologist. The cardiologist has me wear
a heart monitor. I wear a heart monitor for ten days.
I'm logging symptoms that I'm having while I'm wearing this
heart monitor, and literally not one of these symptoms showed
up on the heart monitor. So by the time the
heart monitor thing is finished, I'm convinced that I'm losing
(18:29):
my mind and this must be a me problem, and
I'm going totally crazy. And also at this point, I mean,
this had been like a few weeks into this whole episode,
and my symptoms seemed to be improving, and so I
just went, Okay, well, I guess the anti anxiety myths
are working, and I'll just move about my life and
(18:50):
assume that this was just anxiety. Well spoiler alert, it
was not just anxiety. So I do have several months
of seemingly no symptoms, like, we go through this. That
was September, so you know, go through Thanksgiving, we go
through Christmas, we get through the beginning of the year.
(19:10):
First week in February, I lose all feeling from my
knees down. I'm at first it feels like I was
wearing compression socks even when I wasn't. And I'm just
so confused by this. But at first wasn't overly concerned
about it. It was just like a weird sensation. And
(19:31):
eventually that morphs into like tingling and more numbness, and
then it starts to that sensation starts to crawl up
my right leg. By the time it was crawling up
my right leg, I was like in utter panic about this,
And you know, to go back to what I was
told at the er all those times about maybe this
is anxiety again. By the time these symptoms were worsening
(19:54):
this second time, I was like, this is definitely anxiety.
I mean I have felt anxiety before. I've had panic
attacks before. That is what's happening to me right now.
That is definitely a big part of this. So I'm
just like, instead of going to the er, because I
know how that went last time, I'm gonna just pull
out all my stops. I'm gonna call my primary care provider.
(20:15):
I'm going to get an appointment with her. I'm gonna
go to the acupuncture clinic that I go to get
some acupuncture done. I'm gonna call my chiropractor, get an adjustment,
go in and have a session with her. I'm gonna
get my massage therapist out here, get a massage, gonna
do all my holistic things that I do to see
if I can get my nervous system back to a
point of steady. So I'm doing all those things. My
(20:37):
primary care provider suggests that we do an MRI to
check for a pinch nerve, because she's like, sounds like
a pinch nerve if it's bilateral, if it's in both
legs and kind of in the same spot in both legs.
It sounds like maybe you have a pinch nerve in
your low spine. So then I'm talking to my chiropractor
about that. She's like, yeah, that could make sense. Let's,
you know, check and see how things feel. Let's give
you an adjustment. And my chiropractor was like, you also
(20:58):
should probably check for multexis city. That's something that a
lot of people can experience that can cause bizarre symptoms.
So she's like, all, order a mold test for you,
So we sent out for that. I don't even I
couldn't even go through the whole list of all the
things that we did, but I everything that anyone suggested
to me, I was just like, yes, let's just do it.
So meanwhile, there are still some of those tests that
(21:19):
I have not heard back on, Like the mold toxicity
test has not come back yet. So it's possible that
I could have had some mold exposure or exposure to
like heavy metals or some kind of toxin that could
be causing, you know, some disturbances in my body that
could be creating these symptoms. I don't know yet. But
also during this time, I'm like frantically googling. I'm asking
(21:42):
chat gpt all the things that we do that are
are in many ways kind of unhelpful, because one thing
I noticed was chatchepet. By the way, like when you
ask chatchipt medical questions, it kind of uses your prior
conversations with it against you. I mean, not against you,
but like I just noticed that chatty would be like,
give me an option for something that could be going
(22:03):
on with me by pulling from old information that I
had given it, and then by the time I go
to Google that same ailment, you like, for example, I'm
talking with chat GBT, I'm giving it my symptoms and
it's like, yeah, this could be mass cell activation, and
so I'm like, oh my gosh, and it's like mass
sell activation can cause these symptoms, and it's listing them out,
(22:25):
and I'm really realizing, oh my god, yeah, I've had
every single one of those symptoms in the last year.
So then I go Google mass sell activation and realize
that the actual symptoms that match with mass sell activation
are not exactly the symptoms that I've been having. It
doesn't mean that that's not what's going on. It just
means they're not exactly the symptoms that I've been having.
It's not like a dead ringer for it the way
that chat GBT makes it seem. So I just was like, wow,
(22:49):
chat GBT can be kind of a dangerous way to
and I'm sure like all these doctors, if you're a
medical professional, you got to send me a message and
let me know if it drives you absolutely crazy when
people come in to your office and are like, I
asked chat gebt what's going on? And it told me this, Like,
maybe that drives you crazy or maybe it doesn't. I think.
(23:09):
You know, we're in this weird catch twenty two as
patients where we have to advocate for ourselves because the
way the system is set up, we get like five
minutes with you and it's not always enough time, or
you don't always have enough attention to put on one
patient because you've got so many patients you've got to
take care of. So, yeah, patients are put in this
situation where we have to advocate for ourselves, but we
(23:29):
don't have the level of education that you do, so
we're just using the tools that we have on hand.
But I did wonder at the er when I'm like yeah,
chatcheebt told me that this might be a thing. I
wonder if the doctors are kind of like have an
adverse reaction to that. I told one of the doctors
chat GPT told me I had this IV done, like
an immunity IV done with a bunch of B vitamins
in it, and chat gpt told me that that could
(23:51):
have caused this episode. And the doctor was like, yeah, no,
that that's probably not what happened. So I was like,
I wonder if they kind of hate it when people
do that. But I was using chat GPT to try
to figure out, like what are the options. Like in
my mind, I'm just creating a list of what could
possibly be going on here, and there's so many different
options of what could possibly be going on, but one
(24:14):
thing that kept rising to the top of my list
was multiple sclerosis. So I'm putting together this list of possibilities.
It's like multiple sclerosis, it's mass cell activation, it's mold toxicity,
(24:39):
it's heavy metal toxicity, it's you know, I don't know.
I don't have the list right in front of me,
but there's like thirty things on my list, and I'm
trying to just check one off at a time, my
primary care provider says that she'll order a MRI of
my brain and my upper spine to check for MS.
(24:59):
She was, I don't think it's a mess, but we
will just get that checked off. We'll get it like
checked off your list, so that you don't have to
worry about it. So I told her, yes, let's do that,
but let's try to wait a few days because in
the middle of all of this, we are also doing
fertility treatments. Like before my symptoms even came back, we
had already decided to do these fertility treatments. So I'm
(25:22):
in the middle of my cycle, doing fertility treatments, trying
to get pregnant as this is all taking place, to
add extra stress to the situation. So I'm mid cycle,
I don't know if I'm pregnant yet. I don't want
to do an MRI with contrast, until I know for
sure whether I'm pregnant, and so I'm gonna just wait
a few days until i get pregnant. And it's in
the midst of this waiting period that I'm sitting at
(25:46):
my desk. One day, I'm sitting at my computer and
all of a sudden I'm like, I cannot think straight.
I don't even think I can stand up. The room
is spinning. I'm not okay. So I call my husband.
I'm like, I need you to come home. And he
comes home and he's like, we gotta go to the er.
So we go to the er. This is fourth time
at the er in six months, three times last August
(26:09):
or September. Sorry, and then this is the first time
in twenty twenty six and I present to the er
and they immediately are like, you need to have an
MRI done of your brain and your total spine. So
they order the MRI. They do a pregnancy test. The
pregnancy test is negative, they order an MRI. They send
me for imaging. I'm in the MRI machine, I guess
(26:34):
for three hours, like a three hour scan of my brain.
They gave me some sedatives to help me be able
to relax during the scans, and I'm like five minutes
into the scans and I'm like, I'm going to need
something stronger than that. I'm going to need you to
go get something stronger. It's not going to work for me.
But I get the scans of my brain and get
(26:55):
the scans back. The images come back that I do
have lesions on my brain. There are no lesions on
my spine, which you would expect to see if this
was MS. So it's not really a dead ringer for
an MS diagnosis, but it's not really a dead ringer
for any other diagnosis either. Like, none of the explanations
for why those lesions would be on my brain makes sense,
(27:16):
none of them fit the bill, and so in some
ways it takes me right back to where I started.
It's like something's going on. We don't know exactly what's
going on. At least have a little bit more information now,
and I've been expedited to neurology. Here's a part of
the story that I'll tell that just really Maybe you
could get into this in more detail at a later date,
(27:38):
but for right now, I'll just say a while back,
Matt and I decided to forego traditional health insurance and
to use what's called health share. So with a health share,
you present as a cash bay patient, you pay out
a pocket and then you submit your receipts to the
health share and they reimburse any eligible expenses, which is
so far up till now been like most all expenses
(27:59):
up to a certain taut So that's what we've been doing,
and this works very well for us. This time, I
was referred to neurology, and I was told when I
left the er that this is not emergent. In other words,
they don't need to admit me to the hospital, but
it is an urgent situation that needs to be handled immediately,
so they were going to expedite my neurology appointment. So
they refer me to neurology. The next morning at seven am,
(28:21):
this is like four hours after I leave, not even
two hours after I leave the er, they call me
to get me scheduled for neurology. And while I'm doing
the intake on the phone, she's like, what's your health insurance?
And I'm like, oh, I don't have the health insurance.
I'm cash pay. And she's like, what do you mean
your cash pay And I'm like, yeah, I'm just i'm
cash pay patient and I don't have health insurance. She's like, oh, well,
(28:45):
we don't see cash pay patients and I was like,
what do you mean, Like, I will show up with
a check, I'll write you a check, I'll pay you
cash on site at the time of the appointment. And
she was just like, yeah, no, we don't do that,
and like that just doesn't make any sense. Like that
is so confusing to me. It doesn't make any sense
(29:06):
that I can't show up to an appointment with a
specialist and pay cash before my appointment anyway. That boggles
my mind. So then I had to jump through a
handful of extra hoops to get a neurology appointment, which
I was able to do, thankfully, because I have a
large network. I have a lot of people who love me,
people who want to help me. I've got a lot
of privilege and access and power. I was able to
(29:28):
get myself a neurology appointment and advocate for myself. I
think what really gets to me is that not everybody
is in this position. Not everybody would have access to
the resources that I have. So the system is just
really broken. That's the only takeaway. The system is broken.
It doesn't make a lot of sense, and I'm grateful
that I am able to see a neurologist anyway. As
(29:49):
of right now, this is where the story stops. I mean,
I don't have a conclusion to the story yet. I
don't have a resolution to the story. And one thing
I know about unresolved stories is that they take up
a lot of mental and emotional bandwidth until we can
resolve them. Our brains do not like open story loops.
I've talked about this before. This is why you will
binge a Netflix show way past your bedtime, because your
(30:13):
brain does not want to leave that loop open until tomorrow.
You need to close the loop. You need to know
what's going to happen in the story. You need to
know that the hero is going to be okay. And
having open story loops takes up a lot of mental
and emotional bandwidth. And one thing that I'm trying to
remind myself of is that we're living with a lot
of open story loops right now. We are just like
overtaxed with so many open story loops. We don't know
(30:36):
what's going to happen with the economy. We don't know
what's going to happen with this new war that has
been started. We don't know what's going to happen Politically.
Feels like we're teetering on the brink of potentially like
a big change one way or the other. We don't
know what's going to happen there many of us are
in these open story loops in our lives personally, like
I am, we don't know what's going to happen, and
(30:58):
that level of uncertainty is extreme, really extremely distressing. So
if you are feeling the weight of that right now,
I just want to remind you that you were not crazy,
that you're not making this up, that this is not
like yeah, I mean, even if that stress is manifesting
as physical symptoms. I'm not saying that my symptoms are
stress related. I don't believe that they are. But if
(31:18):
you are having some symptoms that are manifesting or having
stress that is manifesting in physical symptoms, no freaking wonder
you are. Because this is a lot of stress that
all of us are under. And we've been under this
stress since twenty twenty or maybe potentially before that, but
for sure, since the pandemic happened, we're experiencing a lot
of stress and anxiety under the surface. So if you
(31:39):
don't feel like yourself, if you feel overwhelmed, if you
feel tired, more tired than you're used to feeling, if
you are feeling like not like you don't feel like
going out as much, or you don't feel as talkative
with people or whatever. I just want you to know
that it's so so normal that you're not alone, you're
not crazy, and you're not making this up. And I
think one of the things that one of the reasons
(32:04):
I guess I'll say that I'm even sharing this story
here because I'm having like all my demons are popping
up right now saying like you shouldn't have done this.
This is just offloading onto people. This is not what
this platform is for. Nobody needs to know about this
like this. It just isn't the place for this kind
of a thing. The reason that I'm doing this is
I hope, if nothing else, it can be a reminder
(32:25):
that whatever you're going through, it feels better if you
talk about it. It feels better if you stop pretending like
everything's fine, if you stop pretending like nothing's really going on,
if you stop going like, yeah, I'm going through this
really hard and horrible experience in my life, but I'm
just gonna push the record button and be like, here's
ten steps to write a book. I just think in
a time like this, for us to go about our
(32:46):
lives as normal, to continue with the status quo, is
a mistake. It's a misstep and all of us are struggling,
all of us are suffering. You do not have to
pull it together. That is a piece of advice I've
been giving to myself in a month. I've been using
over and over again. You do not have to pull
it together. All my life, I have pulled it together
and pulled it together, and pulled it together. And I
(33:07):
even told my therapist, I was like, I feel like
I have coped so well since twenty twenty, with all
of the curveballs that life has thrown my way, and
this is the straw that's broke the camel's back, Like
I'm no longer coping well, And I think I just
want to remind you that you don't have to keep
coping well. You can be as sad as you need
(33:28):
to be. You can be as scared as you need
to be. You can be as confused as you need
to be. You can feel as lost as you need
to feel. Find someone that you can talk about it with,
Find somewhere that you can be honest, just one place,
one place, or one person, And I promise that talking
(33:48):
about it will lighten the load, It will remind you
that you're not alone. In this and I hope that
this episode can remind you of that it really isn't
about centering me. And I feel bad for me, and
you know whatever, Like, please do pray for me, because
I will do the same for you, Like hold me
in love the same way that I will hold you
in love. Let's hold each other in love right now.
We need that more than ever, More than ever, I'm
(34:12):
holding this space for love here. I'm sitting on my couch.
I'm thinking about you while you listen to this. I
appreciate you listening to my story and hearing me out,
and I hope that I will see you back here
next week on The Writer Story Podcast
Hi, and welcome to you to write your story pipecast.
Good job.
Speaker 2 (00:05):
Really pick up the pieces of your life, pull them
back together with the word you write. All the beauty
and peace and the magic that you'll start too fun
when you write your story. You got the words and said,
don't you think it's down to let them out and
write them down and cover what it's all about and write,
(00:30):
write your story. Write you write your story.
Speaker 1 (00:35):
Hi, and welcome back to the Write Your Story Podcast.
I'm Ali Fallon. I'm your host, and on today's episode,
I'm not really sure how this is going to go.
I don't know exactly how I want to talk about
this or what I want to talk about, but it
feels like the only possible thing that I could talk
about today on this episode because I've been going through
a variety of really confusing health challenges recently, and when
(00:56):
I was trying to think about what I wanted to
record today, I'm like, for better or worse, Like this
could just be my toxic trait. But it just doesn't
feel good to me or write to me to sit
here and be like, Okay, I'm going through this really
horribly stressful time. It's all I can think about my
brain is hyperfixated on this thing, and yet I'm going
to sit down and be like, what could I teach
today about how to write a book? Because I could
(01:18):
think of any number of topics that I could record
this episode about. But the fact of the matter is
it just doesn't feel authentic or in alignment. And maybe
that's my own issue that I need to work out
in therapy. That's like, doesn't always have to be in
alignment with your life, Ali, you can just you know,
record a podcast episode that's about a topic that's not
perfectly in alignment with your life. But for better or worse,
(01:39):
the fact of the matter is, I really feel like
part of my mission here, part of my essence, part
of what I do best, is to tell the truth,
to just talk about what's going on, to say things
as they are, and as scared as I am, to
talk about these health challenges because the more I talk
about it, the more real it feels. I also feel
like there's probably an elm of healing in it for me,
(02:02):
and that's one of a couple of reasons why I
would really like to challenge myself to talk about it,
because I can just feel that it's probably going to
be healing for me to put language to this, and
that's all what this stuff that we do, like is
all about.
Speaker 2 (02:17):
That.
Speaker 1 (02:17):
It's so silly sometimes that we make it about other stuff.
We make it about, like, you know, growing this huge
platform or being some kind of public figure or whatever
it is. Sometimes we make it about helping other people,
which is nice, but it's also about I believe. This
is my belief and it always has been from the
(02:37):
beginning of my public life, that it really is about healing,
and that as we heal through telling our own story,
we also invite others into community with us who heal
simultaneously with us, because healing is not an isolated event.
It's not something that happens to just one person, and
happens to all of us collectively at the same time.
(02:59):
And I said in last week's episode that liberation is
my liberation is tied up in your liberation. That's not
my idea. I've heard that elsewhere, and actually I don't
know where it originates, but it's not an original idea
from Ali Fallon. I'm just reiterating that my liberation is
tied up in yours, and so until all of us
are free, none of us are really free, and for
(03:19):
that reason, I want to take this opportunity to talk
about what's going on with me. If you're new here, welcome,
Welcome to the podcast of an Enneagram for kidding, not kidding,
because yeah, one thing that you'll know about me, or
learn about me really quickly is that I have no
issues kind of cutting straight to the heart of a thing.
(03:41):
I tend to skip past nicetaes. I'm not really a
small talk kind of a girly and so sometimes in
public settings at a party, at a dinner party, for example,
I might be like, let me read this poem. It
really meant a lot to me. I'd love to share
it with the group, and everyone's like whoa, whoa, Like
what you just took us to a place that we
were not trying to go at this party. And so
(04:04):
I know this about myself. And if you are listening
right now, and you're a new listener and you're just like,
I don't really know that I want to go on
a long wild ride with you right now, then totally understandable.
More power to you. Hit pause or go to another episode,
or you know, find another podcast that brings more like well,
I was going to say, brings more lighter positivity, but
(04:25):
hopefully I do bring some light and positivity also into
the space. But one of the qualities about me, for
better or worse, that is just part of who I am,
is that I am going to tell the truth and
the whole truth, and I'm going to just tell it
like it is, exactly like it is. And the fact
of the matter is, I'm in a really heavy time
in my personal life right now. I was telling my
husband earlier today that this, these health challenges are the
(04:48):
last in a long list of challenges I faced in
the last six years. And I know I'm not the
only one. I know that even my challenges, it's poinitless
to compare them, But if we were to sit them
down and compare them to what other people are facing
in the world, they pale in comparison to what many
other people are facing. So this is not me saying
that my problems are somehow more important or trying to
(05:10):
center myself. It's just more saying like, it's been a
long line of really difficult things that have happened, and
this most recent one feels like the straw that has
broken the camel's back from the standpoint that like, I've
been coping pretty well until about now. And this is
one of the things that I want to talk about
on the episode today is maybe this is part of
the point. And if this resonates with you, it resonates
(05:30):
with you, and if it doesn't, then you can leave it.
But maybe this is part of the point, is that
you've been coping really well with all of the challenges
that have come your way, and maybe it's time to
stop coping so well. And I don't mean that in
a dark way. I don't mean, like, you know, throw
away your coping mechanisms and just like go hide under
the blankets, although maybe do that for an afternoon, you know,
(05:51):
Like this weekend, in the midst of everything going on,
I was just like, I'm so sick of being so
healthy and feeling so sick, Like I'm so tired of it.
I go to yoga, I don't drink, I don't smoke,
I don't do any drugs. I pretty much eat gluten
free and dairy free. I eat very healthy. I think,
you know, critically about everything I put into my body.
I'm taking all the supplements, I'm exercising all the time,
(06:13):
and here I am with these health challenges. I'm sick
of it. I want to order a pizza and a coke,
and I want to sit in my bed and I
want to watch trash TV all weekend. So that's what
I did, and it was great, and I highly recommend
that if that's something that appeals to you, or maybe
you have your own version of that, So maybe it's
something different where you're like, I'm at the end of
my rope. I can't hold it together anymore. Maybe it's
(06:34):
time for us to stop holding it together. So this
episode is my earnest attempt to stop holding it together,
to stop pretending like everything's fine when I don't feel
like everything is fine. And I hope that in sharing
my story that you find some points of connection that
maybe make you feel a little bit less alone. Maybe
(06:54):
you've been going through your own set of challenges, health
challenges or otherwise, and maybe hearing me share my story
gives you some courage to share your story with one
other person, or with ten other people, or at your
Bible study or at your book club or on social media.
Here's another thing is I've I have mentioned this and
by the time you hear this episode, hopefully you will
(07:16):
see that I've started to share this story in little
drips on Instagram. It's a challenge that I've given to
myself in conjunction with my friend Ruthie Lindsay. I feel
like this is all just the timing is all synchronous.
A couple of weeks ago, I went to dinner with
my friend Ruthy Lindsay, and she and I were talking
about Instagram, and I was just saying, how how weird
(07:38):
and bizarre it is that on some days if you
ask me about Instagram, I'm like, Instagram's a time waster.
It sucks the life out of me. Nobody should be
on Instagram. It's a powerful drug that should not exist.
There's nothing good that can come out of Instagram. Delete
it forever and your life will be better. And then
other days you could ask me about Instagram and I'm like,
Instagram is a powerful way to bring people together in community,
(07:59):
Like what an amazing apportunity for us to share our
stories and to show up and be honest about what
we're really going through, and to be connected to information
and to resources, and to get inspired and to have
ideas and to be reminded that we're not alone in
the world. And you know, as a mom of little
kids like that can feel so isolating sometimes because it's
harder to get out and go places. And now I
(08:20):
can connect with other moms who are going through similar
things to me. And I've been going through this journey
trying to get pregnant, and I can connect to other
people who are also trying to get pregnant, and I can,
you know, I have these moments of connection with them,
even though we've never met in real life and we
don't know each other. And like, what an amazing tool
that we have at our fingertips. And I was thinking
this earlier today, even about my phone. Like, on the
(08:41):
one hand, like my phone is just like, ugh, my phone.
It gets in the way of every good thing in
my life. Get out of my face my phone. I
hate my phone. I'm always on my phone. It's so addictive.
I can't, you know, get myself to just walk away
from it. And on the other hand, like my phone
is this portal to all the people love me, and
(09:01):
to my nieces and nephews on the other side of
the country, and to people who are checking in with
me and asking me how I'm doing. And again to
more resources and to access and power, like these things
are what we make them to be. And so going
back to the Instagram thing, I Ruthie and I were
talking about this a bunch of dinner and she and
I both were like, man, I've either been thinking like
(09:23):
I need to quit Instagram or I need to like
really challenge myself to start showing up in truth on Instagram.
And I do show up in truth on Instagram. But
there's also a lot that I hold back for good reason.
You know, I've had like wisdom like wise reasons to
hold back some information on Instagram. It's I don't know
that it's necessarily wise to just like share everything from
(09:44):
your life on there, although maybe I'm wrong about that too.
I have no idea. My point being, I feel myself
holding back on Instagram in certain ways, and I think
a lot of it has to do with a fear
of being really seen. And I know that I share
really honestly here on the podcast, and I have a
talked about this health journey a lot, but I've talked
about it some. I've talked about a lot of what
(10:04):
my family and I have been through in the last
six years. So I know that I'm showing up in
some places. But man, there's something about Instagram that just
feels really, really really exposing to me. And I had
this experience the other day where I shared a quick
little clip from being in the er with my husband
and just said something like, you know, when you're in
the er four times in six months, it's going to
(10:26):
really matter who you married. And I'm just so grateful
for a husband who's so steady and has a good
sense of humor and is strong and stands by my side.
And what an amazing gift it is to hold this
man's hand kind of a thing. And I just got
this flood of like love and support and prayers and
all the things, and I was completely overwhelmed. And I
(10:47):
realized in that moment that really my biggest fear about
being on Instagram and about really showing up and showing
my true self there is not about the haters, although
there is some of that. There is definitely like a
I've watched people will get, you know, It's like a
King of the Hill kind of a situation, where like
when someone shows up in their fullness, it can be
(11:09):
very triggering for people. And so I've watched my friends
and acquaintances, I'm people who I also don't know. In
real life, I've watched people show up in their fullness
and just get utterly attacked, and so there is a
fear of that happening. But I think what I realized
is I also have this fear of showing up in
my fullness and being fully received, Like what like that
(11:29):
could happen, Like people could stand by me and love
me and send me love. And now I'm the center
of attention, and I feel nervous that I'm centering myself
and I'm taking up too much space and I'm a
drain on the community and I'm not you know, like
I want to be a gift. I want to be giving,
But in order to be someone who gives, we also
have to be someone who receives. And so when you're
in a time of need, do you allow yourself to
(11:50):
receive from others? It can be really, really uncomfortable to
receive from others, and it's one of the reasons why
we avoid showing up in our fullness. But this for
me feels like a season where I get to practice
being in a posture of receiving, where I get to
text friends and say hey, I really need your prayers.
I don't know what's going on. I'm scared, I don't
(12:12):
know what to do. Can you help? Can you pray?
Can you come over? Can you drop off food? Can
you come take my kids? Can you just sit with me?
Can you hold space while I cry? And that's a
really uncomfortable place to be for me, and maybe it's
uncomfortable for you too. So that's the first kind of
takeaway from all of this. But basically the story, I'll
(12:32):
tell the story in fullness here. I think I'm going
to tell it in a few different kind of like
episodes on Instagram, just because of the platform, there's limitations
around the length, and I know when people are on Instagram,
they're not looking to sit down and listen to a
forty minute episode like you are when you're listening to
a podcast. So I'll tell the story in full here
so you can hear it in full, and then I'll
(12:53):
tell bits and pieces of it on Instagram as well.
If you don't already follow me on Instagram, it's Ali
Fallon on Instagram. I'd love to see you and hear
from you there. Podcasts are interesting because, like you can
leave a review, but otherwise it's not really like a
two way conversation, whereas Instagram is a two way conversation,
and I love having a two way conversation. It's much
more exciting to me to have a two way conversation
than it is to just sit here talking into a microphone.
(13:15):
So if you don't already follow me on Instagram, find
me over there at Ali fallon A L L y
F A L O N and I'll put that in
the show notes. Okay, enough stalling, I will tell the
story of what's been happening to me. So the cliff
(13:39):
notes version is that we don't really know what's going on,
but we do know that last fall I presented to
the er with what seemed like a cardiac concern. At first,
I had just had a miscarriage. This is my second miscarriage,
and I was having cardiac symptoms. I was having chest
pressure and pain. I was having numbness at the time
(14:02):
in my fingertips and in my feet, but I wasn't
really paying much attention to the numbness because I was
mostly focused on the fact that I was having chest pain.
So I come into triage. They do any KG. The
EKG looks normal, but they, of course, because it's chest pain,
they rush me back and do a full work up,
a full evaluation. The doctors and nurses that one thing
I want to say about this is as frustrating as
(14:23):
this whole process has been, the nurses and doctors themselves
are absolute angels on earth. I mean, I want to say,
especially the nurses, but like lots of the doctors too,
have been amazing. And when you give their brains a
problem to solve, I love watching them go like we
are going to get to the bottom of this, and
they have worked so hard to try to solve this
problem for me. So every single individual who I've encountered
(14:48):
has been amazing. The system itself is extremely broken, and
that's one of the things that I would love to
talk about. The system. Our medical system in this country
is so just ft, and there's so many problems with it.
So many things fall through the cracks, and I just
don't think it's equipped. The system itself is not equipped
to really take into account mind, body, spirit and everything
(15:11):
that's going on and to really find solutions or even
find answers to the complex problems that so many of
us are facing. So back to the story, I'm in
the er, they do a full work up. They basically
tell me nothing's wrong with you. Everything's fine. The only
thing that we can find off in your vitals is
you might have a little bit high blood pressure, but
of course you do because you're very stressed. So you
(15:34):
can go home, and you know, one of the nurses
said to me, like, it's very stressful to lose baby.
I know I've had a miscarriage before too. That's probably
what's happening, is you're just having some anxiety. So I
go home and wake up the next day, I'm still
having symptoms. Symptoms seem to be worstening and persisting. And
one of the symptoms that I was having that was
really concerning was dizziness and virtgo. My vertigo is so
(15:58):
bad that it would wake me up from a dead
sleep in the middle of the night. I would be
laying there and all of a sudden, I would wake
up out of a dead sleep and just feel like
I had I was like being swallowed up into this
big hole. Or I would feel like I was like somersaulting,
like falling from a high height is how it felt.
And I was panicked that I was dying. So then
(16:19):
the second day, present to the er with same symptoms.
They do a similar workup, similar conclusion. It's like, you
must be really stressed. You must be, you know, having
a hard time your your body's trying to catch up
to your mind. Your mind's trying to catch up to
your body. Kind of a thing. Let's write you an
anti anxiety med Let's write your script for some anti
(16:39):
anxiety meds. So they send me home third day, still
having the same symptoms. I call my Obi. I'm like,
I don't know what to do. I'm scared, I don't
know what's going on. I still feel terrible. She's like,
I hate to tell you this, but you got to
go back to the er, and I'm gonna call them.
I'm going to tell them that you need to be
admitted to the hospital. So I go back to the
(17:00):
r third night. I'm embarrassed at this point because I'm like,
I know y'all have already done, you know, every single thing,
and all my vitals look normal, but I just truly
don't know what's going on, Like something is not right
in my body, and I just need to we need
to look at it further. So my wonderful Obi, I
(17:21):
love her so much. She calls the hospital, she makes
sure I get admitted, she checks in on me. She
calls her friend who's a cardiac specialist, sends the cardiac
specialist to me. They do a full workup on me.
They order a CT scan with contrast we I don't
even know like the every test that they could do,
they did every level they could check, they checked. I
(17:43):
stayed in the hospital overnight, and still nobody can find
anything wrong with me. And by that third night, after
the third time that I had presented to the er
and then stayed overnight in the hospital, now I'm just like, Okay, well,
maybe everyone was right. Maybe I am just really stressed.
Maybe that's what's going on. So they send me home
(18:06):
that third time from the hospital and I do a
follow up with the cardiologist. The cardiologist has me wear
a heart monitor. I wear a heart monitor for ten days.
I'm logging symptoms that I'm having while I'm wearing this
heart monitor, and literally not one of these symptoms showed
up on the heart monitor. So by the time the
heart monitor thing is finished, I'm convinced that I'm losing
(18:29):
my mind and this must be a me problem, and
I'm going totally crazy. And also at this point, I mean,
this had been like a few weeks into this whole episode,
and my symptoms seemed to be improving, and so I
just went, Okay, well, I guess the anti anxiety myths
are working, and I'll just move about my life and
(18:50):
assume that this was just anxiety. Well spoiler alert, it
was not just anxiety. So I do have several months
of seemingly no symptoms, like, we go through this. That
was September, so you know, go through Thanksgiving, we go
through Christmas, we get through the beginning of the year.
(19:10):
First week in February, I lose all feeling from my
knees down. I'm at first it feels like I was
wearing compression socks even when I wasn't. And I'm just
so confused by this. But at first wasn't overly concerned
about it. It was just like a weird sensation. And
(19:31):
eventually that morphs into like tingling and more numbness, and
then it starts to that sensation starts to crawl up
my right leg. By the time it was crawling up
my right leg, I was like in utter panic about this,
And you know, to go back to what I was
told at the er all those times about maybe this
is anxiety again. By the time these symptoms were worsening
(19:54):
this second time, I was like, this is definitely anxiety.
I mean I have felt anxiety before. I've had panic
attacks before. That is what's happening to me right now.
That is definitely a big part of this. So I'm
just like, instead of going to the er, because I
know how that went last time, I'm gonna just pull
out all my stops. I'm gonna call my primary care provider.
(20:15):
I'm going to get an appointment with her. I'm gonna
go to the acupuncture clinic that I go to get
some acupuncture done. I'm gonna call my chiropractor, get an adjustment,
go in and have a session with her. I'm gonna
get my massage therapist out here, get a massage, gonna
do all my holistic things that I do to see
if I can get my nervous system back to a
point of steady. So I'm doing all those things. My
(20:37):
primary care provider suggests that we do an MRI to
check for a pinch nerve, because she's like, sounds like
a pinch nerve if it's bilateral, if it's in both
legs and kind of in the same spot in both legs.
It sounds like maybe you have a pinch nerve in
your low spine. So then I'm talking to my chiropractor
about that. She's like, yeah, that could make sense. Let's,
you know, check and see how things feel. Let's give
you an adjustment. And my chiropractor was like, you also
(20:58):
should probably check for multexis city. That's something that a
lot of people can experience that can cause bizarre symptoms.
So she's like, all, order a mold test for you,
So we sent out for that. I don't even I
couldn't even go through the whole list of all the
things that we did, but I everything that anyone suggested
to me, I was just like, yes, let's just do it.
So meanwhile, there are still some of those tests that
(21:19):
I have not heard back on, Like the mold toxicity
test has not come back yet. So it's possible that
I could have had some mold exposure or exposure to
like heavy metals or some kind of toxin that could
be causing, you know, some disturbances in my body that
could be creating these symptoms. I don't know yet. But
also during this time, I'm like frantically googling. I'm asking
(21:42):
chat gpt all the things that we do that are
are in many ways kind of unhelpful, because one thing
I noticed was chatchepet. By the way, like when you
ask chatchipt medical questions, it kind of uses your prior
conversations with it against you. I mean, not against you,
but like I just noticed that chatty would be like,
give me an option for something that could be going
(22:03):
on with me by pulling from old information that I
had given it, and then by the time I go
to Google that same ailment, you like, for example, I'm
talking with chat GBT, I'm giving it my symptoms and
it's like, yeah, this could be mass cell activation, and
so I'm like, oh my gosh, and it's like mass
sell activation can cause these symptoms, and it's listing them out,
(22:25):
and I'm really realizing, oh my god, yeah, I've had
every single one of those symptoms in the last year.
So then I go Google mass sell activation and realize
that the actual symptoms that match with mass sell activation
are not exactly the symptoms that I've been having. It
doesn't mean that that's not what's going on. It just
means they're not exactly the symptoms that I've been having.
It's not like a dead ringer for it the way
that chat GBT makes it seem. So I just was like, wow,
(22:49):
chat GBT can be kind of a dangerous way to
and I'm sure like all these doctors, if you're a
medical professional, you got to send me a message and
let me know if it drives you absolutely crazy when
people come in to your office and are like, I
asked chat gebt what's going on? And it told me this, Like,
maybe that drives you crazy or maybe it doesn't. I think.
(23:09):
You know, we're in this weird catch twenty two as
patients where we have to advocate for ourselves because the
way the system is set up, we get like five
minutes with you and it's not always enough time, or
you don't always have enough attention to put on one
patient because you've got so many patients you've got to
take care of. So, yeah, patients are put in this
situation where we have to advocate for ourselves, but we
(23:29):
don't have the level of education that you do, so
we're just using the tools that we have on hand.
But I did wonder at the er when I'm like yeah,
chatcheebt told me that this might be a thing. I
wonder if the doctors are kind of like have an
adverse reaction to that. I told one of the doctors
chat GPT told me I had this IV done, like
an immunity IV done with a bunch of B vitamins
in it, and chat gpt told me that that could
(23:51):
have caused this episode. And the doctor was like, yeah, no,
that that's probably not what happened. So I was like,
I wonder if they kind of hate it when people
do that. But I was using chat GPT to try
to figure out, like what are the options. Like in
my mind, I'm just creating a list of what could
possibly be going on here, and there's so many different
options of what could possibly be going on, but one
(24:14):
thing that kept rising to the top of my list
was multiple sclerosis. So I'm putting together this list of possibilities.
It's like multiple sclerosis, it's mass cell activation, it's mold toxicity,
(24:39):
it's heavy metal toxicity, it's you know, I don't know.
I don't have the list right in front of me,
but there's like thirty things on my list, and I'm
trying to just check one off at a time, my
primary care provider says that she'll order a MRI of
my brain and my upper spine to check for MS.
(24:59):
She was, I don't think it's a mess, but we
will just get that checked off. We'll get it like
checked off your list, so that you don't have to
worry about it. So I told her, yes, let's do that,
but let's try to wait a few days because in
the middle of all of this, we are also doing
fertility treatments. Like before my symptoms even came back, we
had already decided to do these fertility treatments. So I'm
(25:22):
in the middle of my cycle, doing fertility treatments, trying
to get pregnant as this is all taking place, to
add extra stress to the situation. So I'm mid cycle,
I don't know if I'm pregnant yet. I don't want
to do an MRI with contrast, until I know for
sure whether I'm pregnant, and so I'm gonna just wait
a few days until i get pregnant. And it's in
the midst of this waiting period that I'm sitting at
(25:46):
my desk. One day, I'm sitting at my computer and
all of a sudden I'm like, I cannot think straight.
I don't even think I can stand up. The room
is spinning. I'm not okay. So I call my husband.
I'm like, I need you to come home. And he
comes home and he's like, we gotta go to the er.
So we go to the er. This is fourth time
at the er in six months, three times last August
(26:09):
or September. Sorry, and then this is the first time
in twenty twenty six and I present to the er
and they immediately are like, you need to have an
MRI done of your brain and your total spine. So
they order the MRI. They do a pregnancy test. The
pregnancy test is negative, they order an MRI. They send
me for imaging. I'm in the MRI machine, I guess
(26:34):
for three hours, like a three hour scan of my brain.
They gave me some sedatives to help me be able
to relax during the scans, and I'm like five minutes
into the scans and I'm like, I'm going to need
something stronger than that. I'm going to need you to
go get something stronger. It's not going to work for me.
But I get the scans of my brain and get
(26:55):
the scans back. The images come back that I do
have lesions on my brain. There are no lesions on
my spine, which you would expect to see if this
was MS. So it's not really a dead ringer for
an MS diagnosis, but it's not really a dead ringer
for any other diagnosis either. Like, none of the explanations
for why those lesions would be on my brain makes sense,
(27:16):
none of them fit the bill, and so in some
ways it takes me right back to where I started.
It's like something's going on. We don't know exactly what's
going on. At least have a little bit more information now,
and I've been expedited to neurology. Here's a part of
the story that I'll tell that just really Maybe you
could get into this in more detail at a later date,
(27:38):
but for right now, I'll just say a while back,
Matt and I decided to forego traditional health insurance and
to use what's called health share. So with a health share,
you present as a cash bay patient, you pay out
a pocket and then you submit your receipts to the
health share and they reimburse any eligible expenses, which is
so far up till now been like most all expenses
(27:59):
up to a certain taut So that's what we've been doing,
and this works very well for us. This time, I
was referred to neurology, and I was told when I
left the er that this is not emergent. In other words,
they don't need to admit me to the hospital, but
it is an urgent situation that needs to be handled immediately,
so they were going to expedite my neurology appointment. So
they refer me to neurology. The next morning at seven am,
(28:21):
this is like four hours after I leave, not even
two hours after I leave the er, they call me
to get me scheduled for neurology. And while I'm doing
the intake on the phone, she's like, what's your health insurance?
And I'm like, oh, I don't have the health insurance.
I'm cash pay. And she's like, what do you mean
your cash pay And I'm like, yeah, I'm just i'm
cash pay patient and I don't have health insurance. She's like, oh, well,
(28:45):
we don't see cash pay patients and I was like,
what do you mean, Like, I will show up with
a check, I'll write you a check, I'll pay you
cash on site at the time of the appointment. And
she was just like, yeah, no, we don't do that,
and like that just doesn't make any sense. Like that
is so confusing to me. It doesn't make any sense
(29:06):
that I can't show up to an appointment with a
specialist and pay cash before my appointment anyway. That boggles
my mind. So then I had to jump through a
handful of extra hoops to get a neurology appointment, which
I was able to do, thankfully, because I have a
large network. I have a lot of people who love me,
people who want to help me. I've got a lot
of privilege and access and power. I was able to
(29:28):
get myself a neurology appointment and advocate for myself. I
think what really gets to me is that not everybody
is in this position. Not everybody would have access to
the resources that I have. So the system is just
really broken. That's the only takeaway. The system is broken.
It doesn't make a lot of sense, and I'm grateful
that I am able to see a neurologist anyway. As
(29:49):
of right now, this is where the story stops. I mean,
I don't have a conclusion to the story yet. I
don't have a resolution to the story. And one thing
I know about unresolved stories is that they take up
a lot of mental and emotional bandwidth until we can
resolve them. Our brains do not like open story loops.
I've talked about this before. This is why you will
binge a Netflix show way past your bedtime, because your
(30:13):
brain does not want to leave that loop open until tomorrow.
You need to close the loop. You need to know
what's going to happen in the story. You need to
know that the hero is going to be okay. And
having open story loops takes up a lot of mental
and emotional bandwidth. And one thing that I'm trying to
remind myself of is that we're living with a lot
of open story loops right now. We are just like
overtaxed with so many open story loops. We don't know
(30:36):
what's going to happen with the economy. We don't know
what's going to happen with this new war that has
been started. We don't know what's going to happen Politically.
Feels like we're teetering on the brink of potentially like
a big change one way or the other. We don't
know what's going to happen there many of us are
in these open story loops in our lives personally, like
I am, we don't know what's going to happen, and
(30:58):
that level of uncertainty is extreme, really extremely distressing. So
if you are feeling the weight of that right now,
I just want to remind you that you were not crazy,
that you're not making this up, that this is not
like yeah, I mean, even if that stress is manifesting
as physical symptoms. I'm not saying that my symptoms are
stress related. I don't believe that they are. But if
(31:18):
you are having some symptoms that are manifesting or having
stress that is manifesting in physical symptoms, no freaking wonder
you are. Because this is a lot of stress that
all of us are under. And we've been under this
stress since twenty twenty or maybe potentially before that, but
for sure, since the pandemic happened, we're experiencing a lot
of stress and anxiety under the surface. So if you
(31:39):
don't feel like yourself, if you feel overwhelmed, if you
feel tired, more tired than you're used to feeling, if
you are feeling like not like you don't feel like
going out as much, or you don't feel as talkative
with people or whatever. I just want you to know
that it's so so normal that you're not alone, you're
not crazy, and you're not making this up. And I
think one of the things that one of the reasons
(32:04):
I guess I'll say that I'm even sharing this story
here because I'm having like all my demons are popping
up right now saying like you shouldn't have done this.
This is just offloading onto people. This is not what
this platform is for. Nobody needs to know about this
like this. It just isn't the place for this kind
of a thing. The reason that I'm doing this is
I hope, if nothing else, it can be a reminder
(32:25):
that whatever you're going through, it feels better if you
talk about it. It feels better if you stop pretending like
everything's fine, if you stop pretending like nothing's really going on,
if you stop going like, yeah, I'm going through this
really hard and horrible experience in my life, but I'm
just gonna push the record button and be like, here's
ten steps to write a book. I just think in
a time like this, for us to go about our
(32:46):
lives as normal, to continue with the status quo, is
a mistake. It's a misstep and all of us are struggling,
all of us are suffering. You do not have to
pull it together. That is a piece of advice I've
been giving to myself in a month. I've been using
over and over again. You do not have to pull
it together. All my life, I have pulled it together
and pulled it together, and pulled it together. And I
(33:07):
even told my therapist, I was like, I feel like
I have coped so well since twenty twenty, with all
of the curveballs that life has thrown my way, and
this is the straw that's broke the camel's back, Like
I'm no longer coping well, And I think I just
want to remind you that you don't have to keep
coping well. You can be as sad as you need
(33:28):
to be. You can be as scared as you need
to be. You can be as confused as you need
to be. You can feel as lost as you need
to feel. Find someone that you can talk about it with,
Find somewhere that you can be honest, just one place,
one place, or one person, And I promise that talking
(33:48):
about it will lighten the load, It will remind you
that you're not alone. In this and I hope that
this episode can remind you of that it really isn't
about centering me. And I feel bad for me, and
you know whatever, Like, please do pray for me, because
I will do the same for you, Like hold me
in love the same way that I will hold you
in love. Let's hold each other in love right now.
We need that more than ever, More than ever, I'm
(34:12):
holding this space for love here. I'm sitting on my couch.
I'm thinking about you while you listen to this. I
appreciate you listening to my story and hearing me out,
and I hope that I will see you back here
next week on The Writer Story Podcast
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