December 2, 2024 • 52 mins
In this episode, we dive deep into what it's like managing not one but two chronic conditions - pericarditis and Gastroparesis. Living with these diagnoses comes with unique challenges, but it also brings unexpected lessons in resilience, self-care, and finding balance in the chaos.
What to expect:
Understanding pericarditis and Gastroparesis
Navigating triggers: how diet, stress, and lifestyle adjustments play a role in flare ups
Tips for thriving
And of course, our personal journeys with these illnesses.
Whether you're navigating chronic illness yourself or want to better support a loved one, this episode offers valuable insights, heartfelt stories, and a reminder that you're not alone in the journey
Tune in now, and remember - you've got guts!
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Hello, I'm Stefanie and I'm Lauren and this is I've Got Guts, a podcast about living
(00:10):
and thriving with chronic illness.
Cause let's be real, it's really hard, but it doesn't have to be.
You are not alone.
With this podcast, we want to create a community and a space to be able to talk about the tough
stuff and laugh along the way.
The idea for this podcast stemmed from us trying to find one for ourselves to listen
(00:30):
to, but not being able to find anything that didn't make us more sad or frustrated.
Our goal is to talk about the hard stuff, but also talk about how to get through it,
be positive, have a full and productive life, and of course thrive.
But before we get started, just so we're clear, we are not medical professionals.
We are just here sharing our personal experiences.
(00:53):
All right, here we are on a Friday.
Yeah, love Friday.
Me too.
Whole weekend ahead of us.
T G I F.
Yeah.
All right, so thorns and roses of your Friday.
Let's always start with thorns.
Yeah, get them out of the way.
My thorn would be that today, well, my car has been about head all week.
(01:15):
I mean, it started with like not starting and I had to have my dad come and jump my
car and then he had put a new battery in my car and then all of a sudden it got really
loud and today like the loudness hit a level that I was like, I'm, I'm going to explode
on the road today.
Turns out like the muffler is completely detached from the exhaust and the car is not even safe
(01:38):
to drive anymore and I have to get a new car.
So see you later.
Not having a car payment.
And you had a Honda, you have a Honda.
Those babies last a long time.
How many miles do you have on that?
152,000.
So she's up there.
Yeah, she's got a good, she had a good run.
Poor Katniss.
Her car's name is Katniss because she stepped in as tribute for my last car, but poor Katniss
(02:01):
is going to have to be leaving soon.
I love that we name our cars.
Actually, you name your cars and I just copy you and I tried to name my cars.
I think I only named two out of the five I've had.
Oh, mine have all had names.
I started with Disney characters and then evolved to like Sex and the City characters
and now it's a Hunger Games character.
You know, who knows what will be next?
Ooh, I'm excited.
I feel like color dictates it too.
(02:21):
It does.
It does.
What's your thorn for?
Well, so I teach third grade and at that age, you know, what are they, eight and nine.
So they're really unpredictable and this morning, you know, just kicking off Friday, welcoming
the students in and one of my students vomits all over the floor.
And I'm, I just am someone who when I see it, I just start the gag reflex.
(02:45):
I feel like I'm going to do it too.
So I'm not that like supportive teacher that's going to be there for them.
So I ran out of the room.
I go next door to my teammates and she's in a meeting and there was somebody covering
her room.
I'm like, you need to go and cover my class right now.
There's vomit everywhere.
She's like, what?
And the nurse at my school knows there's like three of us that see it and do it and they
(03:08):
know to send reinforcements.
So the amazing custodians came and I literally froze my students out all morning with the
windows open and I was spraying Lysol.
Yeah, I gotta get rid of those germs.
Is this like post Halloween vomit or we got the stomach bug?
Like what am I dealing with?
I mean, think about that.
Actually post Halloween vomit is gross.
(03:29):
Oh my God.
I just thought of like peanut butter cups and snickers being thrown up.
Oh, so gross.
So gross.
So that was my thorn kicking off my Friday.
Not a good one.
All right.
Roses.
Oh, my rose is a special one.
So my brother and my sister-in-law live in Florida for those of you who don't know me.
(03:50):
And they were very horribly affected by Hurricane Helene.
Their whole house was destroyed and it's been really hard for me not being able to see them.
My brother and my sister-in-law are my best friends.
Like honestly, my brother officiated my wedding.
My sister-in-law was in my wedding.
Like they're my favorite people on the face of the earth.
They were here for like the shortest span of time ever because my brother's in his friend's
(04:13):
wedding and I got to see them yesterday.
It was literally for like not even 30 minutes, but it was like the happiest 30 minutes of
the last several months.
And I got to hug them, which is like talk about a rose.
Like, oh my God, it just made my heart so happy.
Oh, I love that.
I'm kind of jealous I didn't get to see them.
I know they said that too.
(04:34):
They're like, we wish we could see everybody.
I know, but so quick.
But at least you got to give them a squeeze and see them, which is so good.
And your rose.
All right, my rose, I think is that it's just a weekend with nothing.
Like isn't that so exciting when you have nothing going on this weekend?
You can just be cozy and be home.
And that's just, that's just my rose going into the weekend, feeling good.
(04:56):
No plans.
It's a good feeling.
I mean, no plans except all the sports that I have to attend for my son, Connor.
But besides that, like no serious plans.
Cozy weekend at home.
Yeah.
As long as you know that you can like sleep in at least one day, that makes your weekend
better.
Yeah.
I love it.
All right.
So let's kick things off with you and your next, I feel like we're just going down our
(05:19):
list of illnesses.
So your next part of your story is.
Pericarditis.
So last we left off talking all about the autoimmune.
So it was celiac and then it was Hashimoto's and then kind of just quiet for a while.
(05:39):
And it was right after we moved into our house, our house that we lived in for, oh my gosh,
how many years?
10, 12 years?
We were just.
Was it 12 years?
I think so.
Wow.
Right around there.
So we were only living there about a year and a half, two years.
And I just remember it being the holidays and I was sitting on the couch and Sean was
(06:01):
doing whatever he was doing in a different room.
And I'm like watching TV.
Actually, I know exactly what I was doing.
I was Googling yoga classes because I was going to start yoga.
I wanted to do yoga.
It was like all about it.
And I was sitting on the couch Googling it and trying to find a studio.
And I started getting these severe stabbing chest pains.
And as you know, for my story, that that could be normal for me.
(06:22):
It could be a sign of a panic attack.
And a lot of times panic attacks can come on when you're at rest and not necessarily
when you are in a stressful situation.
And that's a lot of times how it would happen for me.
So I'm thinking, OK, panic attack.
You're fine.
You're home.
You're Googling yoga classes.
Like it's fine.
And I did all my normal things to try to get myself out of it and I couldn't get myself
(06:45):
out of it.
And then I resorted to taking an anxiety pill and I took the pill and within an hour, it
usually worked and it wasn't working and the pain was getting worse.
And the weirdest thing was is when I like sitting on the couch, when I bent over, I
would feel a little bit of relief.
It was so bizarre.
So I remember looking at Sean, my husband, and being like, OK, I took the anxiety pill.
(07:09):
It should have worked by now.
It's not working.
I don't understand what's happening.
So we ended up going to the hospital because it's chest pain, you know, and could I really
be having a heart attack?
Maybe.
And you can't mess around with those things.
So any time you are having some type of severe pain like that, especially when it's chest
pain, go to the hospital because it's better to get checked out and be fine than mess around
(07:32):
with your heart.
So I went and they did all the tests.
First of all, when you go in with chest pain, they get you right to the back.
Like I cut the line.
I got right in there.
You always have good ER experiences.
Like I'm in the ER for like 17 hours dying and you're like, they took me right back.
Yeah.
It's like every time.
(07:53):
It's so I feel like I don't know what it is.
It's because I'm either passing out or I have chest pain of some sort.
Very true.
Very true.
So that's the one way to get to the back quickly.
So I go to the hospital, they run all the tests and it was not a heart attack.
They did the EKG.
They did all the things.
Long story short, they found that I had around your heart is a muscle, the pericardium.
(08:16):
I think I'm saying it right.
And it was inflamed.
And what was happening was every time my heart was beating, instead it was bashing up against
this muscle and it's not supposed to touch the muscle, but the muscle was inflamed.
And that is essentially what pericarditis can be.
So it's like that it almost mimics a heart attack.
Well, can one be challenging to diagnose?
(08:38):
And then once you do get diagnosed with it, it can be challenging to figure out the cause.
So it could be from a virus.
It could be from an infection.
It could be from it could be autoimmune related.
If people who have like lupus or rheumatoid arthritis could get it.
So there's just there's just a lot of unknown of why it can occur.
(08:58):
But once they figure out what it was, I was able to get on meds to help.
But it was like four weeks long.
Yeah.
So your husband, I love him, but worst communicator ever when you're in the hospital.
And I remember he texted me and he's like, she just got admitted to the cardiac unit.
And I was like, what?
Oh my God.
And the way he explained it in the text, he made it sound like your heart was like bigger
(09:21):
than it was supposed to be.
And I remember thinking, oh, she's the opposite of the Grinch.
It's just growing too many sizes.
It's not too small.
It's too big.
This is so room.
It's so true.
And that's essentially what was happening.
But it honestly was one of the I think one of the most scary, scariest experiences because
(09:44):
it's like it's not that I'm saying belly pain isn't scary because that is when you're having
abdominal pain, you're having things like that.
When it's in your chest and you really especially knowing me, I took my anxiety pill.
It wasn't working and thinking, my God, what is going on?
You know, and it was scary.
And the weirdest thing was is that I could not lay back on my like I couldn't lay back
(10:05):
and down.
I could only sit up or lean forward.
And actually leaning forward was better.
And I guess that's really normal.
It's just the way your heart is beating and hitting against that muscle that can cause
that pain.
So there's basically different categories of pericarditis and there's like an acute
kind.
There's a recurrent kind.
There's a chronic kind.
(10:26):
I ended up with the acute one where it lasted just about a month and I knew that future
episodes could happen and because it is can be related to autoimmune or it could be from
a virus or infection.
So I did know that I ended up getting it three different times.
And I think by the third time, I'm like, yeah, pericarditis.
I don't think I went to the hospital that time.
(10:47):
I just like called my cardiologist.
I'm like, same symptoms.
I knew what to recognize.
He put me on.
I forget the exact name of the med, but it was like a specific med for it that helped
it kind of go away.
But it was just a really crazy experience for sure.
And it just shows that you always should listen to your body.
And then I think the unknown part of not knowing what it was or what was causing it was the
(11:10):
scariest.
But as soon as I got that, like, this is what it is.
Here's your plan.
Here's your meds.
It's like, okay, even looking back on this, I'm like, it wasn't that bad.
You know, so you were in the hospital though, the first time around, at least for days.
Yes.
Do you remember it was around the holidays and your mom came and painted my nails in
the hospital.
She gave me my Christmas nails because it was like they couldn't send me home because
(11:33):
the pain was so bad.
And that is the other thing too.
They've got to manage your pain with IV meds and until you can, you know, the inflammation
goes down and you're feeling better.
Like, there's no way they could have sent me home.
So that's when they admitted me to the whatever.
Cardiac unit.
Cardiac unit.
You're like the youngest person on the floor.
Everybody here is like really old, she's in her 30s.
(11:53):
And now we're like, they make you walk in the hallway, you know, and then I'm like passing
everybody all the old people I'm whipping around.
Oh my goodness.
So, so yeah.
So if you ever have chest pain like that, never ignore it.
Always take care of it.
But know that it's not always a heart attack.
Clearly.
Clearly there's lots of other things that can go wrong.
(12:15):
Yeah.
Yeah.
All right.
So I feel like mine was a short one because that was just a short guy, but we're coming
up on like something really big.
Yeah.
I feel like this was just that pivotal moment for you.
Yeah.
This is my turn.
Yes.
My plot twist.
Yes.
Your plot twist.
Yeah.
(12:35):
So where I left off with you guys last, I told you about like my pH monitoring test,
which is where they put like a little, I don't know, robot on my esophagus and I had to monitor
my acid levels and then I had to do that god awful swallow study.
And the results of that where I had the Gerd of a very old, very overweight man.
(12:55):
And it wasn't manageable through diet, through medicine.
I mean, we really, we powered through every heartburn medicine and face of the earth.
And like we found one that sort of took the edge off, but not enough to say it was helping
me.
I was just, I wasn't eating.
I was in pain.
I was, I was not like, I didn't have any quality of life.
(13:18):
I was just going to say that I remember just coming over and seeing you and like my heart
just hurt.
Like, and my eyes filled with tears because you were just not, you were not well and it
was scary.
It was like, when I would see you and I haven't seen you for a couple of days and I would,
you were just not in a good state.
Yeah.
So I wasn't, I just wasn't in a good place.
So my gastro at the time, it wasn't Dr. Kim, the wonderful doctor we talked about.
(13:43):
At this point I already had to find a new doctor.
And I do have to say this gastro is one of, still is one of the most reputable gastros
in the area.
And I'll dispute that at the end of this story.
Cause I have some beef with him along with the surgeon he recommended me to, but they
recommended me to surgeon and he recommended a surgery called a Nissen Fundoplication.
(14:08):
So a Nissen Fundoplication is basically where they take the floppy end of your stomach and
they wrap it around your esophagus to restrict it.
Cause my esophagus was just open and enclosed and like a psychopath and all this acid was
just coming up and that's really what was causing my issues.
So wrapping my stomach around my esophagus, now my esophagus is in a permanent position.
(14:29):
It cannot open or close anymore.
I didn't feel like I got enough information about the surgery.
I met with the surgeon maybe two or three times leading up to the procedure and they
tell you all the things it's going to do for you.
You won't have heartburn anymore.
You won't be on heartburn medicine, which was the biggest push for me to have the surgery.
(14:52):
Cause they said heartburn medicine is bad for you.
And if you're on it for a long time, long enough time, you can have get esophageal cancer.
I mean, that's all they had to say.
My mom was at every appointment with me.
She was like, Oh my God, we can't, you cannot be getting esophageal cancer.
So I made the decision to go ahead with the procedure.
It seemed like the right thing to do.
Nobody at any point was like, there are huge risks associated with this surgery.
(15:18):
Nobody lays that information out for you.
I feel like with any procedure that's this huge, there should be a patient advocate in
the room and they should be like, here.
So the doctor's telling you all the benefits to this procedure.
Let me tell you all the risks to this procedure.
Cause if someone would have gone through those with me, I think I would have thought a little
bit more.
(15:39):
I would have done more research going into the procedure and maybe gone with a different
doctor.
Like I just went with whatever doctor was recommended to me.
Right.
Right.
Cause it's like that trust.
Like you're just like trusting they're the medical professionals.
You're trusting them.
We're only teachers.
We don't know all of that.
Right.
And it's not good.
Yeah.
So I had the surgery in December guys, December 20th, 2017.
(16:05):
Jingle bells.
Jingle bells.
Christmas 2009 was ruined.
I went ahead and ruined Christmas 2017.
I mean, I wasn't in the hospital because I had the procedure on the 20th.
I had to stay in the hospital for three days after and then I was able to come home.
I will tell you, I have a very distinct memory of like coming up from where you have the
(16:28):
surgery to like the room I was going to be in.
And my mom could probably even tell the story better.
She said that as soon as I sat down on the bed, I started crying and I asked for pain
medicine and the nurse was like, you just got some down in the, you know, OR or whatever.
And I just cried even harder when she said that.
And my mom was like, I could tell by the look on your face, it was unbearable.
(16:50):
The pain was unbearable.
I mean, they literally just cut your stomach and wrapped it up around your esophagus.
I also had a hiatal hernia.
So they fixed that too.
So part of my stomach was pushing up into my esophagus.
So they fixed that as well.
So I was in a lot of pain.
It wasn't well managed at that point, but it was fine.
I mean, those are the some of the three of the most miserable days of my life.
(17:12):
I mean, you have a tube going into your stomach that they eventually have to rip out.
I couldn't eat.
I couldn't go to the bathroom by myself.
And I was in excruciating pain the whole time.
So it was rough.
I mean, like literally the only thing that got me through that hospital stay was shout
out to Hallmark Christmas movie.
And I have to say, I remember when I came and visited you at that hospital, it was nice.
(17:33):
It was you had your own room.
I remember going in there and being like, this is huge.
This is great.
So the facility was beautiful.
The facility was wonderful.
Yeah.
The facility was wonderful.
And Hallmark.
And Hallmark.
That was it.
You got to love Hallmark.
So I came home after the procedure and I was, you know, they put you, move you forward,
you go on a diet that is made for people who are having stomach surgeries.
(17:56):
There's a specific diet you follow.
It's like really mushy bland food basically.
So that's what I was eating.
And from the get go, I knew something was not right.
I was like, oh my God, this is so bad.
Like I was religiously taking the pain medicine, like whatever it was every four to six hours.
The second that timer went off, I was like, I'm ready.
(18:18):
I was in so much pain and it was like about a week.
And at this point I knew like my break was ending.
We're teachers obviously.
So I was like, okay, I'm supposed to go back to work.
I knew something was wrong.
So I called my doctor and he did end up giving me a couple extra days off, but no more pain
medicine.
(18:40):
And I mean, this is like super illegal, but at the time my grandma was going through cancer
stuff and she would like slip me a pain pill because she could not handle seeing me suffer.
I was suffering so bad.
And the doctor made me think I was crazy for even asking for medicine beyond a week.
And I think that's just such a problem in society too.
Like you have pain meds to heal your body, right?
(19:01):
So you're taking the pain meds so that you can not be in pain, so you can heal.
And because certain people abuse that, here you are really needing it and not getting
it because they're unsure if you're abusing it or not, which you clearly were not because
something was clearly wrong.
It's crazy to me because I did end up going and seeing the doctor in person before I went
(19:24):
back to work and he brushed it off, but I'm like, how can you not see how much I'm suffering
right now?
Like something is wrong.
And I feel like even then I wonder when he saw you, was he like, oh, she should be better
and she, you know, right?
Or she should be at a better state than when you were like, was this a sign in itself?
Things we will never know.
(19:45):
So I did end up going back to work about like, I would say a week after I was supposed to,
I went one day, the second day I woke up, I couldn't even stand up.
My mom actually had to call my administrator and be like, she's really sick.
She can't even talk to you right now.
And actually my principal at the time, not nice.
(20:05):
Like I called her to be like, I'm still really sick.
She's like, whatever.
Can you just let me know when you can make it back to work?
And I was like, well, thank you for caring about my wellbeing here.
So compassionate.
I appreciate that.
So wonderful and compassionate.
But I did, I think I was off for like three extra days and then I ended up going back
to work.
(20:26):
It was so bad.
I had to, oh, one day we're going to get real gross everybody.
I pooped my pants at work.
My mom had to literally bring me a change of clothes.
This is when we learned to always keep a spare change of clothes in your car, right?
I also puked on the reg.
On the reg.
Let's talk about what after the surgery, they're like, after you have the surgery, you won't
(20:48):
be able to vomit.
Gave two weeks.
I was puking up a storm.
I had to.
Didn't you puke more, I think, after surgery than you ever did in your life prior?
In my whole life.
I had a student in my class who we had a code word and I would throw out the code word.
I'd get up and run to puke and she would facilitate the rest of my lesson.
(21:09):
She is so hysterical.
I'll never forget her.
She makes my heart so happy.
I would throw out the code word.
It was something so silly too.
It was like hot chocolate.
She'd be like, okay, everybody.
She would just stand up.
She was a genius.
She knew what I was teaching already.
She did a great job.
At the end of the year, she asked if she could honor herself as my sidekick teacher.
(21:35):
I was like, you go girl.
You write yourself an award and everything.
You deserve it.
I know.
That's how I was getting through work.
I went back in January.
January.
All the way to June.
All the way to June.
A lot of months.
A lot of months.
Then things kept getting worse.
I went back to the doctor.
(21:55):
His answer to me when I was like, something is really wrong.
I'm vomiting all the time.
I can't control my bowels.
I'm in so much pain.
He was like, it's just your IBS interfering with the procedure.
I'm like, what?
What buddy?
What does that mean?
Then eventually after seeing the surgeon three times, I ended up going to my gastro and he
(22:19):
did an endoscopy on me.
After the endoscopy, he was like, I don't see anything concerning, blah, blah, blah.
I read the notes.
I actually didn't read the notes until a couple years ago.
In the notes from that endoscopy, it says possible gastroparesis?
This was in 2018, right after the surgery.
(22:41):
They never spoke those words to you.
Never.
You read them.
I read them years later.
If my gastro at the time had just said to me, I see potential signs of gastroparesis,
could my journey have been different?
After that, I went on for another full year of suffering without any answers.
(23:05):
I wonder if I had caught it that soon after the surgery, could my journey have looked
different?
That's why I'm disputing him as a reputable doctor because I think if you see anything
concerning on any kind of test, you talk it out with that patient because you're a gastro.
Do not know what gastroparesis can entail because nobody talks about it.
(23:30):
I also feel like too, it's like, why not?
Why not just say something to you?
Why not show you what possibly could be happening so you can uncover how you're feeling and
get some answers, right?
Exactly.
Yes.
Oh my God.
It was craziness.
I'm not kidding when I tell you I suffered so much.
(23:55):
I could get emotional.
It was so long and it was week after week after month after month.
I could get emotional right now.
Having you, my best friend, deteriorate before my eyes.
I could still picture us being on Ali's boat at the lake and we went out with a bunch
of girlfriends and we were having the best time and just out of nowhere, it was like
(24:17):
a switch would flip and I could just see it in her face and she was just like over the
side of the boat vomiting and sick and just not doing well.
It broke my heart because it's like you want, it's like anyone you love and care about,
you want to be able to take away the pain, you want to be able to do something to relieve
it and there was nothing we could do and it was just be there for you in any way, shape
(24:41):
or form but it was a dark, dark time.
It was a dark time.
I turned into a shell of a human being and now here's the deal.
I was eating salads every day for lunch because it was quick.
I'm a teacher.
I have barely 30 minutes to eat.
I would get like-
And you love salads.
I love salad.
Pre-made salad, eat it.
Turns out that's one of the worst things I could have been doing for myself.
I was poisoning myself.
(25:02):
You didn't even know it.
For forever.
So 2019, yeah, so March of 2019, I had a routine gynecologist appointment and I went in and
I was like doubled over in pain and she was like, again?
So I mean every time-
We have the best gyno.
We have the same gyno.
We also have the same gyno, yes.
(25:23):
And her gyno delivered my son and we just love her.
She's amazing.
She's the best.
She was like, I can't handle seeing you like this anymore.
I think you might have endometriosis.
Meet me at the hospital right now.
I'm going to do exploratory surgery.
This is how much we love her because she gets it done.
She's going to find an answer no matter what it is.
Yeah, so call my parents.
(25:44):
I'm like, meet me at the hospital.
I'm going in for a procedure.
So they come, whatever.
Procedure's over.
This is why I love her.
These were her exact words to me.
You're full of shit.
And I go, what?
And she goes, I have never seen anything like that in my life.
I literally was just pulling poop out of you.
Pulling, it kept coming and coming.
(26:04):
She's like, it had to be backed up all the way to your throat.
My God.
She's like, something's really wrong with your digestive system.
So she puts a call into my gastro.
Nothing came of that.
They didn't react.
No response, whatever.
And then, so that was March.
In August, I had a routine appointment with my primary care doctor who we also had the
(26:29):
same primary care doctor for a minute.
We did for a minute.
So really, what do you think about it?
We really just-
This is very intertwined.
We are very intertwined on the same journey.
And she also, I was having a bad day.
And she also was like, I can't handle seeing like this anymore.
She goes, I think you might have a condition called gastroparesis.
I'm going to send you for a gastric emptying study.
(26:49):
So this is the primary care.
This is not your gastro.
No, this is your primary care.
So she sends me for a gastric emptying study, which so for those of you who are not familiar,
you go into a hospital and you eat radioactive eggs.
So I was Spider-Man for like a whole day.
That just sounds so-
Yeah.
I eat these radioactive eggs.
(27:12):
Okay.
How do they taste?
Disgusting.
Luckily, they let, this sounds gross, but I put a little jelly on them just to like-
That doesn't sound gross.
I love dipping my eggs in jelly, especially grape jelly.
Yeah.
So that was a thing.
So every 20 minutes for like four hours, I went under an x-ray machine and they basically
see like where the food is in your system.
So at the end of the four hours, whatever, because a normal person digests a meal in
(27:36):
three to four hours, I still had a certain percentage of food left in my system, which
gave me that official gastroparesis diagnosis.
As soon as a test was done, the technician was able to say to me, you have gastroparesis.
So I actually at the time worked with a girl who also had gastroparesis right across the
hall from me.
(27:56):
That's such a universe moment.
Is that like not people are placed in your life for a reason.
And she had a doctor in Rochester who specialized in gastroparesis, but he was about to retire.
And she said, I just want you to at least have an initial appointment with him because
he's going to set your head straight on gastroparesis.
So I ended up getting in with him.
I forget about that.
(28:17):
And I went in end of September, 2019 and he gave me my official diagnosis of gastroparesis.
And he gave me, he said, I'm going to give you some advice.
And he was like, give yourself five to 10 years to figure, to let your body adjust,
first of all, and to figure out what works and what doesn't work for you.
He goes, it's genuinely that long of a journey for people with gastroparesis.
(28:41):
That trial and error.
Five to 10 years, like the magnitude of like how long that is, is insane.
And I'm just in, I'm not even what, I'm five years in.
So I'm still learning.
I feel like I still have learning to do.
He also told me to drink a Coke with any large meal that I eat.
Because he said, he basically, if you have gastroparesis, you can form a, a bezoar it's
(29:04):
called.
It's basically like a clump of undigested food in your stomach.
And if you get one of those and go into the hospital, they basically put a line down your
throat into your stomach and hit it with straight Coke to like break it up.
Like Coca-Cola Coke.
Coca-Cola.
Yeah.
So crazy to think about how Coke, something in Coca-Cola helps disintegrate.
So I, it's like part of my official diet.
(29:27):
And if I don't have a Coke, all of you in this room have been with me when I'm at a
restaurant and I can't get a Coke and the panic that comes over me is real.
I like every time I do a Walmart order, I just get more Coke because I never know when
room's coming over.
Yeah.
I mean, I have to have it.
I can't get it.
And he also said to me, he said, they're eventually down the line.
They're going to want to remove your colon and turn your intestines.
(29:49):
And he's like, don't ever let them do that to you.
He's like, they're going to push it hard.
Please don't let them do that ever.
He was like, it's going to make your gastroparesis 10 times worse.
He's like, please, if you listen to me on anything, listen to me on that.
And I feel like after your fundoplication surgery, that did not go well.
Why would I?
Yeah.
Right.
So you're probably like, yes, please.
I will never do another surgery like that.
And then he peaced out on me.
(30:10):
He retired and they ended up just putting me with another doctor at the practice who you'll
hear more about her in my next set of stories.
I loved her.
I wish she had never left.
But anyways, so diagnosis, right?
So that's September of 2019.
And I literally ate baby food from September to March, baby food.
(30:33):
I was eating like baby food, SpaghettiOs, baby food, like fruit and vegetables.
And I ate mashed potatoes.
Those, you know, in the freezer section, you can get those smiles.
Yes, smile fries.
Smile fries.
That's really all I ate.
Right.
Because why?
It was so easy to digest.
Yes.
(30:54):
And then COVID hits.
And for everybody else being like isolated in their home for an extended period of time
was their worst nightmare.
Again, the universe was looking out for me and it was exactly what I needed because I
was able to do the most insane elimination diet ever.
I mean, you have to think we went on hiatus from teaching in March.
(31:16):
Right.
All the way.
And we didn't go back to work until December of that next year.
So I had from March to December to do a full elimination diet and I nailed down my safe
foods and my totally unsafe foods.
And I learned what a flare is.
So before I get into that, I just real quick, for those of you who don't know what gastroparesis
(31:39):
is.
I was just going to say, I feel like we need the definition.
What is it exactly?
So it's a condition where the stomach muscles have impaired motility.
So they don't contract and move food through the digestive tract as they should.
So it's a motility disorder, but it actually means so gastro, stomach, paresis, paralysis.
(32:03):
So it means paralyzed stomach.
So my stomach was paralyzed.
And as it turns out, this is the theory of multiple doctors.
The surgeon who did my surgery damaged my vagus nerve.
He nicked my vagus nerve during the procedure.
What is the vagus nerve?
So your vagus nerve is the biggest, most important nerve in your body.
(32:24):
It runs from your brain to your toes.
And it is the primary, it serves for the primary functions of every, everything.
He nicks this.
He nicks it.
Paralyzes my stomach.
Yeah.
I have major problems with him.
And if you really think about it, you were feeling not well and everything, all those
like, like red signs were happening.
(32:47):
And really it wasn't, it was probably because he.
Yeah.
So this whole time that I was suffering, it was because I had gastroparesis.
He nicked my vagus nerve.
And you'll hear in later episodes, he also damaged a few other things, but that's another
story for a different day.
But so basically your food, it's delayed emptying into your stomach.
(33:08):
So, or your intestines, I should say.
So most people don't know this, but your actual stomach is like right under your left breast.
So everything I eat and drink sits in there.
So you guys all, you normal folk digesting about four hours for me, it's about 10 to
12.
Everything I eat sits there for about 10 to 12 hours and if it's something that's hard
(33:31):
to digest, it sits there for even longer.
And then it starts to rot.
And eventually my body is like, okay, this rotting thing isn't going to go down.
So it's got to come out somehow.
So that's where I learned what a flare really was.
And for me in the beginning, my flares were, I was throwing up every 20 minutes for like
(33:52):
three days straight.
It's just like so insane.
I feel like by the end you were like, hospital, not hospital.
What do you do?
You know?
Yeah.
I mean, and it's COVID time.
So it's not like, I literally had to navigate this completely on my own.
I mean, my family was there for me as much as they could be, but we were, COVID was a
(34:13):
scary time.
We didn't know.
Like, you know what I mean?
And I didn't have a boyfriend, husband, significant other, roommate, nothing at the time.
By yourself.
I was by myself.
And you know what?
I was thankful for that in a way because I didn't want anybody to see me.
I was very shameful at first.
And a huge, I have a blog and that has helped me get through a lot of it, but a huge piece
(34:38):
of my story that I've left out of my blog.
And even when I talk to people about my condition, I leave out the part about pooping because
I'm embarrassed.
I know.
Yeah.
There's such a stigma around it, right?
I hate it.
It's a huge part of, so like, I would have those episodes with throwing up, but I also
(34:59):
have episodes where it's the opposite, where I'm pooping every 20 minutes for three days
straight and I have to wear a diaper.
I've had moments.
Yes, yes.
And it can feel embarrassing because of just what society puts on poop.
And I didn't want even my mom and dad to witness me like that.
I don't want anyone to see, I don't want you to see me like that.
(35:20):
I didn't want Connor to see me like that.
I was happy to be by myself, but I also isolated myself quite a bit.
Yes.
I was worried about you during that time.
Yeah.
That was a rough time.
And I went through a lot of feelings.
I mean, definitely my family and friends all went through the stages of grief.
(35:41):
And I think sometimes they still cycle in and out of different phases, depending on
what's happening with my health.
Some of my family members took it harder than others.
Some of them took a lot longer to understand it than others.
And I think some still struggle to fully understand it.
Yeah.
But I went through a phase where I...
(36:03):
So my sweet spot is I have to eat early and anything past three o'clock is really pushing
it for me.
So dinner was out for me and I was a foodie.
My God.
Still am, but...
And she's the best cook ever.
Everything she makes from her mind or recipe book is fantastic.
(36:23):
And yeah.
So I lost that part of me.
When you have gastroparesis, you can't have fiber in any way, shape or form.
So I can't eat vegetables and I can't eat fruit and I can't have red meat.
I basically live off of white starches, potatoes, pasta, rice, bland, not fun things.
(36:44):
Easy to digest.
Right.
I went through a phase where I was like, I wouldn't go out to dinner.
I couldn't handle being in the environment.
I couldn't handle the ambiance.
I couldn't handle the smells.
I couldn't handle watching other people eat.
It infuriated me.
And I refused to take part in anything that had to do with restaurants or dinner.
(37:04):
Holidays were so hard.
Oh my God.
I could cry thinking about it.
When I realized I had to give up Christmas Eve snacks.
Oh my God.
Yes.
Because food is such a part of your life and who you were.
And then to have all of a sudden that be taken away from you, you were grieving the loss.
You were grieving the loss of what was.
(37:24):
And I'll tell you what, I still grieve the loss.
When I see someone eating a steak or a salad, I'm like, I hate you.
Please let me have that.
And there have been times where I put a piece of steak in my mouth and I suck on it and
then I spit it out.
Listen.
It's glorious.
Don't feel bad.
I do the same thing and this is gross.
(37:45):
I spit it out and give it to my dog.
Smart.
Sean goes, what are you, a baby, feeding your baby bird?
I'm like, you know what?
Yeah.
We do what we got to do to get by.
Yeah.
So it's really playing.
And gastroparesis is such a unique beast.
I mean, you can, and I'm hoping that if anyone's listening out there that has gastroparesis
and your story is vastly different than mine, please reach out to us because we want people
(38:09):
on here with different perspectives.
It affects everyone very, very, very differently.
And I'm lucky that I'm able to control mine through diet right now because some people
need a gastric pacemaker or a feeding tube or it completely just wipes out some people.
It's a horrific, horrific disease and you never know what end of it you're going to
(38:34):
get.
And this is why I'm mad that they don't tell you about this prior to, because a major cause
of this condition is having vagus nerve damage during this surgery and nobody tells you that.
It's literally, I say it's ruined my life.
It's ruined my life in a lot of ways, but I've also like learned a lot and come out on the
(38:54):
other end and my flares have changed.
I mean, I went from, I could have flares that lasted for a week where I was just like deathly
ill for a week.
Now it's a day to three days, which is not horrible and it's getting better.
I'm not throwing up as much, but it varies.
Right now it's the pooping that's worse than the throwing up.
(39:16):
But then in a year it might be the opposite.
I just never know.
And that's the thing too, it's the unknown.
I can wake up one day and just be dying and I wake up one day and be fine.
And I never know what that day is going to be.
It makes work really hard.
It's so unpredictable.
I mean, we're teachers.
It's not like we're sitting at a desk where you can slip away and do what you need to
(39:37):
do.
There are students in a classroom waiting for you.
And I've had to advocate.
I mean, in the last school I worked in, I had a principal who had Crohn's disease and
was so understanding, like unbelievably understanding.
And it was wonderful.
But I've really, I've had to advocate in different jobs that I've had for myself.
And I think when you hear our stories, all of our stories, but this one especially, advocacy
(40:02):
is a huge deal for me, for you.
I know I've learned how much you have to be your own advocate because nobody cares about
your own health as much as you do.
And I've gotten to the point where like my current gastro, I'll, I just have to message
her and be like, this is happening, this is happening, this is happening.
(40:22):
I need a stretch.
So like once you have a fund application, sometimes your esophagus needs to be stretched
a little because I can get too restricted and then you can't get stuff down.
She knows.
When they stretch you, do they do balloon dilation or did they do the tool?
Sometimes either or depending on the situation.
And I don't mess around, you know, like, and I'll be honest with you, there aren't a lot
(40:47):
of doctors who know enough about this condition in its entirety.
Like my current gastro for sure doesn't know enough about the condition.
And every time I go to her with an issue, she's like, what about probiotics?
And I have to remind her, remember, I can't take them.
Because by the time they get past my stomach and into my intestines, it doesn't work anymore.
(41:08):
We've discovered like I can't take pills that come in a capsule.
Like the capsule just sits inside of me and I ended up barfing up a capsule like three
days later.
Not even doing what it needs to do.
So there are certain things and I will fight for it.
Every, and I, every time I go to a new doctor, it's like this dread washes over me because
I feel like I have to re-explain my case to everyone.
(41:29):
And it's such a unique case and it changes all the time.
So like, it's hard to keep up with it, but I feel strongly that I have to.
And I will always be advocating for myself, staying on top of the newest medicines, the
newest technology.
And guess what, folks, I'm still on heartburn medicine.
Right.
(41:49):
And the purpose, the main, one of the big sellers for the surgery was so that you did not need
to take it anymore.
Yeah.
And here you are.
Still on it.
So do your research before you ever get a surgery.
Yeah.
I mean, you have to remember some doctors are not out there to help you.
Some doctors are out there to make money.
And I think unfortunately the doctor who did my procedure pushed a surgery on me that maybe
(42:12):
we could have done something different.
Or it was like a couple of days before Christmas.
I kind of feel like the dude was like, I'm about to be on vacation.
And he just kind of like flew through my surgery and jacked me up and he doesn't even know
about it.
There's going to come a day where I tell him.
I know.
I know it's like a written letter or whatever.
But I do think it's a huge, huge issue.
(42:33):
And I'm very passionate about spreading awareness about gastroparesis because it's real.
All these new weight loss medicines people are going on and everything.
I'm like, losing weight isn't worth potentially getting gastroparesis.
You have no idea what your life could be like.
Right.
Right.
Right.
(42:54):
And I was alone for so long.
I know.
I had trouble dating.
Okay.
Let's talk about this.
Like here you are.
It's so unknown with your stomach and what you're eating or what you can eat.
You can't do dinner.
So here she is, single gal.
How are you going to date someone when you can't do dinner, you can't really drink, right?
(43:14):
And it's such a social thing.
And then it's the unknown of like, am I going to be nauseous?
Am I going to have to poop?
Am I going to have to puke?
It's just, it was so stressful.
I feel like for a while you shut down.
Oh, I shut down.
I mean, there was shut down with dating, I should say.
Yeah, I shut down with dating for sure.
I mean, there was a lot of people who, as soon as I said, I can't really eat dinner,
(43:34):
stop talking to me completely.
Then there was like one person I went on a date with who like, remember, got really pushy
with me and I was really sick and I was like, please stop.
I'm really sick and I can't hang out with you.
And I just like brushed him off.
But I do have a husband now.
Okay, well, let's talk about that.
(43:57):
So I did end up finding someone who actually, his initial reach out to me was, I admire
you for putting yourself out there and talking about your health.
And like, because you were very openly sharing your heart and your story through your blog.
Yep.
And he, as soon as he said that to me, as soon as I remember calling room and being
like, he complimented my health journey.
(44:18):
She's like, oh my God, he's the one.
He's the one.
He's the one.
He's also the producer of this podcast.
So shout out to my hubby.
He's the best.
He's the best.
And here's the thing.
I knew it.
I knew it when you guys, because they, you bypassed like dinner.
You guys went to, where'd you go?
Some coffee.
Coffee shop situation.
We got some tea.
Okay.
But this tea place, I mean, who goes for tea till like midnight?
(44:40):
I remember panicking.
I'm like, okay, so either he abducted her and she's somewhere else or this is going
really well.
Like who has tea till like midnight?
But they were teeing it up.
Needless to say, it doesn't have to be a life sentence.
And I know a lot of people with gastroparesis might be listening to this and feeling like
it's a death sentence, but there are things you can do to make it better.
(45:04):
And we will talk about that in future episodes, but just some of the things that worked for
me are acupuncture.
Acupuncture saved my life.
I go like almost religiously every two to three weeks.
The Coke, the Coke has saved my life.
So listening to my body.
So like if I, I can tell the difference between a one-off puke and a, okay, I'm going to
(45:29):
be puking a lot today or I'm going to be pooping a lot today.
Like I know the difference.
You have to really learn to listen to your body.
Yeah.
Because I feel like a lot of times we're in such a culture where it's like work, hustle,
get it done, go to work, show up.
And you have to take care of yourself and you have to listen to your body because you
can't go and teach your students all day long when you're dying, right?
(45:50):
Take care of you, stay home, feel better, and then go when you know you're ready to.
Yeah.
And I always, when things are bad, I fall back to that like bland soft food diet and
sleep.
I sleep a lot.
And on weekends, I need that recharge.
Like I can sleep 10 to 11 hours a night on the weekend.
And I genuinely need that for my body to like heal itself and let the food kind of process.
(46:15):
But I'm smart about how much I eat.
I can't handle much.
I would say like a palm full of food is my, I have one to two meals a day and they're
very small.
Like an English muffin for breakfast and some cream of rice for lunch.
And that's all I eat in a day.
And everybody's like, aren't you starving?
And I'm like, no, I actually feel like I ate 17 meals.
(46:39):
And a big thing for me is water.
I can't drink water.
Which is so crazy because you would think you would want to get it down, right?
To like flush it out, but it just won't go down for you that easy.
And this is one thing that is common with a lot of people with gastroparesis.
Water is hard and I don't know the full reasoning behind it.
I know it's something about the viscosity of it.
(47:01):
It's so like there's nothing to it.
I'm not kidding you.
I could take five sips of water and it feels like the whole entire Atlantic Ocean is swimming
inside of me and it's painful and awful.
Bubbles are my savior.
So like I'm trying to get past soda.
I've just found a sparkling water I like and I'm just easing into the sparkling water world.
But bubbles are what make me better.
(47:23):
And that is the opposite for some people.
Some people with gastroparesis can't have any carbonation.
Right, because it could make it worse.
And I think it just goes back to listening to your body.
You know, sometimes we search for answers elsewhere and I feel like you can listen to Room's Story
and you hear all of this to know that you're not alone.
But at the same point, it's okay if a Coke doesn't work for you or whatever else it may
(47:44):
be.
Listen to your body, you know?
We have to find those things.
So this was the huge turning point for my health.
This is really where my health really deteriorated.
And that, you know, in the next couple of episodes, you'll hear a little bit more about
like what other damage was done during that surgery and then what having gastroparesis
(48:06):
caused with the issues it has caused because it has caused quite a few and they are recurrent
and not fun issues.
Yes.
Heavy one today.
It was a heavy one today.
But at the same point, I feel like getting it out there is doesn't it feel like good
to just say it and get it out there because it could help anybody.
Give you some guidance or make you stop and think before you get that surgery or you move
(48:30):
forward with whatever medication.
Listen to your body.
Do your research.
And lean into the people in your life, you know, to support you and the ones who don't.
There's a thing.
You just got to do what you got to do.
And I did.
I lost some friends along the way.
Yes, you did.
You did.
And you know what?
You find out who your real people are when you go through some dark times with your help
like that.
(48:51):
And the ones that stick around, aka me.
Yep.
These are the good ones.
We get it and we know it.
All right.
So we're going to wrap this one up today.
I know this was a darker episode and we went into this saying like we wanted this to be
a podcast you could come to for happiness and to learn how to thrive and everything.
(49:11):
But I think towards the end of my story, hopefully that came across like this was a very unfortunate
thing for me, but it has also shaped me into the person I am now.
And I become like this advocate and I have this blog and we're doing this podcast and
it's really kind of empowering.
It's been an empowering journey for me.
And I have a full and very, very happy life and it is so possible.
(49:36):
It is.
And honestly, when I think about just like an outsider looking in at everything you've
been through, I feel like your journey with all of this shaped you into who you are today.
And I think about that person is exactly who you need to be, you know?
And it's like sometimes we have to embrace the journey and we have to embrace what we're
(49:58):
going through because it's making you and preparing you for whatever is next to come.
And you know, if we think about it, you're on this IVF journey.
You're going to have a baby.
Like this is really exciting.
And I almost where I think a lot of people would be in a position of, you know, fear,
worry, unknown.
You've been through so much already.
(50:18):
You are going to do this with class and ease and you're going to pop out the most adorable
little baby ever.
Oh, yes.
Or babies.
You never know.
You never know.
But right when you think about it, keep that in mind.
Everybody who's listening that even through the darkest times, there is everything's happening
not just to you, but for you and moving you where you need to go and preparing you for
(50:39):
what's next.
And there's always something to be grateful for in those moments.
Like I think about when you were just talking about COVID, right?
Like that was such a dark time and we were like, we love COVID.
Not that we love COVID.
I shouldn't say we loved it, but we loved the isolated time where you got to figure
out your diet and work through your health issues.
It was a blessing in disguise.
Right.
Exactly.
(51:00):
There's always something to be grateful for.
There's always some type of something that glimmer of sparkle, of hope.
I've said it so many times.
The universe really does have your back.
Like look at all the instances where the universe placed what I needed right in front of me
at the time that I needed it.
Like as a girl.
Hey, Carrie.
Anthony.
My husband.
(51:20):
The girl who worked across the hall from me who had gastroparesis randomly.
Like there's just so many things.
So really it can be a positive journey.
It is.
When you're in those moments, like looking for those, those little gems of hope and possibility
and reassurance.
You know what really saved me for a long time?
What?
Was every night I would sit down and write down three things I was grateful for.
(51:43):
So even if it was the worst day of my life, I found three glimmers of hope every single
day and I did that for almost two years and that helped me so much.
So even something as small as that can just help you to see that even though you're going
through something hard, you have good things in your life.
Right, right.
Yes.
The power of writing and journaling.
I mean, and look that I feel like didn't that essentially evolve into your blog and you
(52:04):
found release in the writing of it all.
And that just inspired us sitting here today doing this podcast with you.
Everything leads to something.
It does.
It does.
This beautiful journey that we're on and I love that we're sharing it with everyone.
It feels good to share.
It does feel good.
I hope you guys feel that way too.
Yeah, same.
So thanks for tuning in to us.
(52:25):
So we'll catch you next time.
Bye.
Bye.
Hello, I'm Stefanie and I'm Lauren and this is I've Got Guts, a podcast about living
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and thriving with chronic illness.
Cause let's be real, it's really hard, but it doesn't have to be.
You are not alone.
With this podcast, we want to create a community and a space to be able to talk about the tough
stuff and laugh along the way.
The idea for this podcast stemmed from us trying to find one for ourselves to listen
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to, but not being able to find anything that didn't make us more sad or frustrated.
Our goal is to talk about the hard stuff, but also talk about how to get through it,
be positive, have a full and productive life, and of course thrive.
But before we get started, just so we're clear, we are not medical professionals.
We are just here sharing our personal experiences.
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All right, here we are on a Friday.
Yeah, love Friday.
Me too.
Whole weekend ahead of us.
T G I F.
Yeah.
All right, so thorns and roses of your Friday.
Let's always start with thorns.
Yeah, get them out of the way.
My thorn would be that today, well, my car has been about head all week.
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I mean, it started with like not starting and I had to have my dad come and jump my
car and then he had put a new battery in my car and then all of a sudden it got really
loud and today like the loudness hit a level that I was like, I'm, I'm going to explode
on the road today.
Turns out like the muffler is completely detached from the exhaust and the car is not even safe
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to drive anymore and I have to get a new car.
So see you later.
Not having a car payment.
And you had a Honda, you have a Honda.
Those babies last a long time.
How many miles do you have on that?
152,000.
So she's up there.
Yeah, she's got a good, she had a good run.
Poor Katniss.
Her car's name is Katniss because she stepped in as tribute for my last car, but poor Katniss
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is going to have to be leaving soon.
I love that we name our cars.
Actually, you name your cars and I just copy you and I tried to name my cars.
I think I only named two out of the five I've had.
Oh, mine have all had names.
I started with Disney characters and then evolved to like Sex and the City characters
and now it's a Hunger Games character.
You know, who knows what will be next?
Ooh, I'm excited.
I feel like color dictates it too.
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It does.
It does.
What's your thorn for?
Well, so I teach third grade and at that age, you know, what are they, eight and nine.
So they're really unpredictable and this morning, you know, just kicking off Friday, welcoming
the students in and one of my students vomits all over the floor.
And I'm, I just am someone who when I see it, I just start the gag reflex.
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I feel like I'm going to do it too.
So I'm not that like supportive teacher that's going to be there for them.
So I ran out of the room.
I go next door to my teammates and she's in a meeting and there was somebody covering
her room.
I'm like, you need to go and cover my class right now.
There's vomit everywhere.
She's like, what?
And the nurse at my school knows there's like three of us that see it and do it and they
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know to send reinforcements.
So the amazing custodians came and I literally froze my students out all morning with the
windows open and I was spraying Lysol.
Yeah, I gotta get rid of those germs.
Is this like post Halloween vomit or we got the stomach bug?
Like what am I dealing with?
I mean, think about that.
Actually post Halloween vomit is gross.
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Oh my God.
I just thought of like peanut butter cups and snickers being thrown up.
Oh, so gross.
So gross.
So that was my thorn kicking off my Friday.
Not a good one.
All right.
Roses.
Oh, my rose is a special one.
So my brother and my sister-in-law live in Florida for those of you who don't know me.
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And they were very horribly affected by Hurricane Helene.
Their whole house was destroyed and it's been really hard for me not being able to see them.
My brother and my sister-in-law are my best friends.
Like honestly, my brother officiated my wedding.
My sister-in-law was in my wedding.
Like they're my favorite people on the face of the earth.
They were here for like the shortest span of time ever because my brother's in his friend's
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wedding and I got to see them yesterday.
It was literally for like not even 30 minutes, but it was like the happiest 30 minutes of
the last several months.
And I got to hug them, which is like talk about a rose.
Like, oh my God, it just made my heart so happy.
Oh, I love that.
I'm kind of jealous I didn't get to see them.
I know they said that too.
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They're like, we wish we could see everybody.
I know, but so quick.
But at least you got to give them a squeeze and see them, which is so good.
And your rose.
All right, my rose, I think is that it's just a weekend with nothing.
Like isn't that so exciting when you have nothing going on this weekend?
You can just be cozy and be home.
And that's just, that's just my rose going into the weekend, feeling good.
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No plans.
It's a good feeling.
I mean, no plans except all the sports that I have to attend for my son, Connor.
But besides that, like no serious plans.
Cozy weekend at home.
Yeah.
As long as you know that you can like sleep in at least one day, that makes your weekend
better.
Yeah.
I love it.
All right.
So let's kick things off with you and your next, I feel like we're just going down our
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list of illnesses.
So your next part of your story is.
Pericarditis.
So last we left off talking all about the autoimmune.
So it was celiac and then it was Hashimoto's and then kind of just quiet for a while.
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And it was right after we moved into our house, our house that we lived in for, oh my gosh,
how many years?
10, 12 years?
We were just.
Was it 12 years?
I think so.
Wow.
Right around there.
So we were only living there about a year and a half, two years.
And I just remember it being the holidays and I was sitting on the couch and Sean was
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doing whatever he was doing in a different room.
And I'm like watching TV.
Actually, I know exactly what I was doing.
I was Googling yoga classes because I was going to start yoga.
I wanted to do yoga.
It was like all about it.
And I was sitting on the couch Googling it and trying to find a studio.
And I started getting these severe stabbing chest pains.
And as you know, for my story, that that could be normal for me.
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It could be a sign of a panic attack.
And a lot of times panic attacks can come on when you're at rest and not necessarily
when you are in a stressful situation.
And that's a lot of times how it would happen for me.
So I'm thinking, OK, panic attack.
You're fine.
You're home.
You're Googling yoga classes.
Like it's fine.
And I did all my normal things to try to get myself out of it and I couldn't get myself
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out of it.
And then I resorted to taking an anxiety pill and I took the pill and within an hour, it
usually worked and it wasn't working and the pain was getting worse.
And the weirdest thing was is when I like sitting on the couch, when I bent over, I
would feel a little bit of relief.
It was so bizarre.
So I remember looking at Sean, my husband, and being like, OK, I took the anxiety pill.
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It should have worked by now.
It's not working.
I don't understand what's happening.
So we ended up going to the hospital because it's chest pain, you know, and could I really
be having a heart attack?
Maybe.
And you can't mess around with those things.
So any time you are having some type of severe pain like that, especially when it's chest
pain, go to the hospital because it's better to get checked out and be fine than mess around
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with your heart.
So I went and they did all the tests.
First of all, when you go in with chest pain, they get you right to the back.
Like I cut the line.
I got right in there.
You always have good ER experiences.
Like I'm in the ER for like 17 hours dying and you're like, they took me right back.
Yeah.
It's like every time.
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It's so I feel like I don't know what it is.
It's because I'm either passing out or I have chest pain of some sort.
Very true.
Very true.
So that's the one way to get to the back quickly.
So I go to the hospital, they run all the tests and it was not a heart attack.
They did the EKG.
They did all the things.
Long story short, they found that I had around your heart is a muscle, the pericardium.
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I think I'm saying it right.
And it was inflamed.
And what was happening was every time my heart was beating, instead it was bashing up against
this muscle and it's not supposed to touch the muscle, but the muscle was inflamed.
And that is essentially what pericarditis can be.
So it's like that it almost mimics a heart attack.
Well, can one be challenging to diagnose?
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And then once you do get diagnosed with it, it can be challenging to figure out the cause.
So it could be from a virus.
It could be from an infection.
It could be from it could be autoimmune related.
If people who have like lupus or rheumatoid arthritis could get it.
So there's just there's just a lot of unknown of why it can occur.
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But once they figure out what it was, I was able to get on meds to help.
But it was like four weeks long.
Yeah.
So your husband, I love him, but worst communicator ever when you're in the hospital.
And I remember he texted me and he's like, she just got admitted to the cardiac unit.
And I was like, what?
Oh my God.
And the way he explained it in the text, he made it sound like your heart was like bigger
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than it was supposed to be.
And I remember thinking, oh, she's the opposite of the Grinch.
It's just growing too many sizes.
It's not too small.
It's too big.
This is so room.
It's so true.
And that's essentially what was happening.
But it honestly was one of the I think one of the most scary, scariest experiences because
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it's like it's not that I'm saying belly pain isn't scary because that is when you're having
abdominal pain, you're having things like that.
When it's in your chest and you really especially knowing me, I took my anxiety pill.
It wasn't working and thinking, my God, what is going on?
You know, and it was scary.
And the weirdest thing was is that I could not lay back on my like I couldn't lay back
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and down.
I could only sit up or lean forward.
And actually leaning forward was better.
And I guess that's really normal.
It's just the way your heart is beating and hitting against that muscle that can cause
that pain.
So there's basically different categories of pericarditis and there's like an acute
kind.
There's a recurrent kind.
There's a chronic kind.
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I ended up with the acute one where it lasted just about a month and I knew that future
episodes could happen and because it is can be related to autoimmune or it could be from
a virus or infection.
So I did know that I ended up getting it three different times.
And I think by the third time, I'm like, yeah, pericarditis.
I don't think I went to the hospital that time.
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I just like called my cardiologist.
I'm like, same symptoms.
I knew what to recognize.
He put me on.
I forget the exact name of the med, but it was like a specific med for it that helped
it kind of go away.
But it was just a really crazy experience for sure.
And it just shows that you always should listen to your body.
And then I think the unknown part of not knowing what it was or what was causing it was the
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scariest.
But as soon as I got that, like, this is what it is.
Here's your plan.
Here's your meds.
It's like, okay, even looking back on this, I'm like, it wasn't that bad.
You know, so you were in the hospital though, the first time around, at least for days.
Yes.
Do you remember it was around the holidays and your mom came and painted my nails in
the hospital.
She gave me my Christmas nails because it was like they couldn't send me home because
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the pain was so bad.
And that is the other thing too.
They've got to manage your pain with IV meds and until you can, you know, the inflammation
goes down and you're feeling better.
Like, there's no way they could have sent me home.
So that's when they admitted me to the whatever.
Cardiac unit.
Cardiac unit.
You're like the youngest person on the floor.
Everybody here is like really old, she's in her 30s.
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And now we're like, they make you walk in the hallway, you know, and then I'm like passing
everybody all the old people I'm whipping around.
Oh my goodness.
So, so yeah.
So if you ever have chest pain like that, never ignore it.
Always take care of it.
But know that it's not always a heart attack.
Clearly.
Clearly there's lots of other things that can go wrong.
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Yeah.
Yeah.
All right.
So I feel like mine was a short one because that was just a short guy, but we're coming
up on like something really big.
Yeah.
I feel like this was just that pivotal moment for you.
Yeah.
This is my turn.
Yes.
My plot twist.
Yes.
Your plot twist.
Yeah.
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So where I left off with you guys last, I told you about like my pH monitoring test,
which is where they put like a little, I don't know, robot on my esophagus and I had to monitor
my acid levels and then I had to do that god awful swallow study.
And the results of that where I had the Gerd of a very old, very overweight man.
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And it wasn't manageable through diet, through medicine.
I mean, we really, we powered through every heartburn medicine and face of the earth.
And like we found one that sort of took the edge off, but not enough to say it was helping
me.
I was just, I wasn't eating.
I was in pain.
I was, I was not like, I didn't have any quality of life.
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I was just going to say that I remember just coming over and seeing you and like my heart
just hurt.
Like, and my eyes filled with tears because you were just not, you were not well and it
was scary.
It was like, when I would see you and I haven't seen you for a couple of days and I would,
you were just not in a good state.
Yeah.
So I wasn't, I just wasn't in a good place.
So my gastro at the time, it wasn't Dr. Kim, the wonderful doctor we talked about.
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At this point I already had to find a new doctor.
And I do have to say this gastro is one of, still is one of the most reputable gastros
in the area.
And I'll dispute that at the end of this story.
Cause I have some beef with him along with the surgeon he recommended me to, but they
recommended me to surgeon and he recommended a surgery called a Nissen Fundoplication.
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So a Nissen Fundoplication is basically where they take the floppy end of your stomach and
they wrap it around your esophagus to restrict it.
Cause my esophagus was just open and enclosed and like a psychopath and all this acid was
just coming up and that's really what was causing my issues.
So wrapping my stomach around my esophagus, now my esophagus is in a permanent position.
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It cannot open or close anymore.
I didn't feel like I got enough information about the surgery.
I met with the surgeon maybe two or three times leading up to the procedure and they
tell you all the things it's going to do for you.
You won't have heartburn anymore.
You won't be on heartburn medicine, which was the biggest push for me to have the surgery.
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Cause they said heartburn medicine is bad for you.
And if you're on it for a long time, long enough time, you can have get esophageal cancer.
I mean, that's all they had to say.
My mom was at every appointment with me.
She was like, Oh my God, we can't, you cannot be getting esophageal cancer.
So I made the decision to go ahead with the procedure.
It seemed like the right thing to do.
Nobody at any point was like, there are huge risks associated with this surgery.
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Nobody lays that information out for you.
I feel like with any procedure that's this huge, there should be a patient advocate in
the room and they should be like, here.
So the doctor's telling you all the benefits to this procedure.
Let me tell you all the risks to this procedure.
Cause if someone would have gone through those with me, I think I would have thought a little
bit more.
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I would have done more research going into the procedure and maybe gone with a different
doctor.
Like I just went with whatever doctor was recommended to me.
Right.
Right.
Cause it's like that trust.
Like you're just like trusting they're the medical professionals.
You're trusting them.
We're only teachers.
We don't know all of that.
Right.
And it's not good.
Yeah.
So I had the surgery in December guys, December 20th, 2017.
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Jingle bells.
Jingle bells.
Christmas 2009 was ruined.
I went ahead and ruined Christmas 2017.
I mean, I wasn't in the hospital because I had the procedure on the 20th.
I had to stay in the hospital for three days after and then I was able to come home.
I will tell you, I have a very distinct memory of like coming up from where you have the
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surgery to like the room I was going to be in.
And my mom could probably even tell the story better.
She said that as soon as I sat down on the bed, I started crying and I asked for pain
medicine and the nurse was like, you just got some down in the, you know, OR or whatever.
And I just cried even harder when she said that.
And my mom was like, I could tell by the look on your face, it was unbearable.
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The pain was unbearable.
I mean, they literally just cut your stomach and wrapped it up around your esophagus.
I also had a hiatal hernia.
So they fixed that too.
So part of my stomach was pushing up into my esophagus.
So they fixed that as well.
So I was in a lot of pain.
It wasn't well managed at that point, but it was fine.
I mean, those are the some of the three of the most miserable days of my life.
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I mean, you have a tube going into your stomach that they eventually have to rip out.
I couldn't eat.
I couldn't go to the bathroom by myself.
And I was in excruciating pain the whole time.
So it was rough.
I mean, like literally the only thing that got me through that hospital stay was shout
out to Hallmark Christmas movie.
And I have to say, I remember when I came and visited you at that hospital, it was nice.
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It was you had your own room.
I remember going in there and being like, this is huge.
This is great.
So the facility was beautiful.
The facility was wonderful.
Yeah.
The facility was wonderful.
And Hallmark.
And Hallmark.
That was it.
You got to love Hallmark.
So I came home after the procedure and I was, you know, they put you, move you forward,
you go on a diet that is made for people who are having stomach surgeries.
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There's a specific diet you follow.
It's like really mushy bland food basically.
So that's what I was eating.
And from the get go, I knew something was not right.
I was like, oh my God, this is so bad.
Like I was religiously taking the pain medicine, like whatever it was every four to six hours.
The second that timer went off, I was like, I'm ready.
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I was in so much pain and it was like about a week.
And at this point I knew like my break was ending.
We're teachers obviously.
So I was like, okay, I'm supposed to go back to work.
I knew something was wrong.
So I called my doctor and he did end up giving me a couple extra days off, but no more pain
medicine.
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And I mean, this is like super illegal, but at the time my grandma was going through cancer
stuff and she would like slip me a pain pill because she could not handle seeing me suffer.
I was suffering so bad.
And the doctor made me think I was crazy for even asking for medicine beyond a week.
And I think that's just such a problem in society too.
Like you have pain meds to heal your body, right?
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So you're taking the pain meds so that you can not be in pain, so you can heal.
And because certain people abuse that, here you are really needing it and not getting
it because they're unsure if you're abusing it or not, which you clearly were not because
something was clearly wrong.
It's crazy to me because I did end up going and seeing the doctor in person before I went
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back to work and he brushed it off, but I'm like, how can you not see how much I'm suffering
right now?
Like something is wrong.
And I feel like even then I wonder when he saw you, was he like, oh, she should be better
and she, you know, right?
Or she should be at a better state than when you were like, was this a sign in itself?
Things we will never know.
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So I did end up going back to work about like, I would say a week after I was supposed to,
I went one day, the second day I woke up, I couldn't even stand up.
My mom actually had to call my administrator and be like, she's really sick.
She can't even talk to you right now.
And actually my principal at the time, not nice.
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Like I called her to be like, I'm still really sick.
She's like, whatever.
Can you just let me know when you can make it back to work?
And I was like, well, thank you for caring about my wellbeing here.
So compassionate.
I appreciate that.
So wonderful and compassionate.
But I did, I think I was off for like three extra days and then I ended up going back
to work.
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It was so bad.
I had to, oh, one day we're going to get real gross everybody.
I pooped my pants at work.
My mom had to literally bring me a change of clothes.
This is when we learned to always keep a spare change of clothes in your car, right?
I also puked on the reg.
On the reg.
Let's talk about what after the surgery, they're like, after you have the surgery, you won't
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be able to vomit.
Gave two weeks.
I was puking up a storm.
I had to.
Didn't you puke more, I think, after surgery than you ever did in your life prior?
In my whole life.
I had a student in my class who we had a code word and I would throw out the code word.
I'd get up and run to puke and she would facilitate the rest of my lesson.
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She is so hysterical.
I'll never forget her.
She makes my heart so happy.
I would throw out the code word.
It was something so silly too.
It was like hot chocolate.
She'd be like, okay, everybody.
She would just stand up.
She was a genius.
She knew what I was teaching already.
She did a great job.
At the end of the year, she asked if she could honor herself as my sidekick teacher.
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I was like, you go girl.
You write yourself an award and everything.
You deserve it.
I know.
That's how I was getting through work.
I went back in January.
January.
All the way to June.
All the way to June.
A lot of months.
A lot of months.
Then things kept getting worse.
I went back to the doctor.
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His answer to me when I was like, something is really wrong.
I'm vomiting all the time.
I can't control my bowels.
I'm in so much pain.
He was like, it's just your IBS interfering with the procedure.
I'm like, what?
What buddy?
What does that mean?
Then eventually after seeing the surgeon three times, I ended up going to my gastro and he
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did an endoscopy on me.
After the endoscopy, he was like, I don't see anything concerning, blah, blah, blah.
I read the notes.
I actually didn't read the notes until a couple years ago.
In the notes from that endoscopy, it says possible gastroparesis?
This was in 2018, right after the surgery.
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They never spoke those words to you.
Never.
You read them.
I read them years later.
If my gastro at the time had just said to me, I see potential signs of gastroparesis,
could my journey have been different?
After that, I went on for another full year of suffering without any answers.
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I wonder if I had caught it that soon after the surgery, could my journey have looked
different?
That's why I'm disputing him as a reputable doctor because I think if you see anything
concerning on any kind of test, you talk it out with that patient because you're a gastro.
Do not know what gastroparesis can entail because nobody talks about it.
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I also feel like too, it's like, why not?
Why not just say something to you?
Why not show you what possibly could be happening so you can uncover how you're feeling and
get some answers, right?
Exactly.
Yes.
Oh my God.
It was craziness.
I'm not kidding when I tell you I suffered so much.
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I could get emotional.
It was so long and it was week after week after month after month.
I could get emotional right now.
Having you, my best friend, deteriorate before my eyes.
I could still picture us being on Ali's boat at the lake and we went out with a bunch
of girlfriends and we were having the best time and just out of nowhere, it was like
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a switch would flip and I could just see it in her face and she was just like over the
side of the boat vomiting and sick and just not doing well.
It broke my heart because it's like you want, it's like anyone you love and care about,
you want to be able to take away the pain, you want to be able to do something to relieve
it and there was nothing we could do and it was just be there for you in any way, shape
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or form but it was a dark, dark time.
It was a dark time.
I turned into a shell of a human being and now here's the deal.
I was eating salads every day for lunch because it was quick.
I'm a teacher.
I have barely 30 minutes to eat.
I would get like-
And you love salads.
I love salad.
Pre-made salad, eat it.
Turns out that's one of the worst things I could have been doing for myself.
I was poisoning myself.
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You didn't even know it.
For forever.
So 2019, yeah, so March of 2019, I had a routine gynecologist appointment and I went in and
I was like doubled over in pain and she was like, again?
So I mean every time-
We have the best gyno.
We have the same gyno.
We also have the same gyno, yes.
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And her gyno delivered my son and we just love her.
She's amazing.
She's the best.
She was like, I can't handle seeing you like this anymore.
I think you might have endometriosis.
Meet me at the hospital right now.
I'm going to do exploratory surgery.
This is how much we love her because she gets it done.
She's going to find an answer no matter what it is.
Yeah, so call my parents.
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I'm like, meet me at the hospital.
I'm going in for a procedure.
So they come, whatever.
Procedure's over.
This is why I love her.
These were her exact words to me.
You're full of shit.
And I go, what?
And she goes, I have never seen anything like that in my life.
I literally was just pulling poop out of you.
Pulling, it kept coming and coming.
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She's like, it had to be backed up all the way to your throat.
My God.
She's like, something's really wrong with your digestive system.
So she puts a call into my gastro.
Nothing came of that.
They didn't react.
No response, whatever.
And then, so that was March.
In August, I had a routine appointment with my primary care doctor who we also had the
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same primary care doctor for a minute.
We did for a minute.
So really, what do you think about it?
We really just-
This is very intertwined.
We are very intertwined on the same journey.
And she also, I was having a bad day.
And she also was like, I can't handle seeing like this anymore.
She goes, I think you might have a condition called gastroparesis.
I'm going to send you for a gastric emptying study.
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So this is the primary care.
This is not your gastro.
No, this is your primary care.
So she sends me for a gastric emptying study, which so for those of you who are not familiar,
you go into a hospital and you eat radioactive eggs.
So I was Spider-Man for like a whole day.
That just sounds so-
Yeah.
I eat these radioactive eggs.
(27:12):
Okay.
How do they taste?
Disgusting.
Luckily, they let, this sounds gross, but I put a little jelly on them just to like-
That doesn't sound gross.
I love dipping my eggs in jelly, especially grape jelly.
Yeah.
So that was a thing.
So every 20 minutes for like four hours, I went under an x-ray machine and they basically
see like where the food is in your system.
So at the end of the four hours, whatever, because a normal person digests a meal in
(27:36):
three to four hours, I still had a certain percentage of food left in my system, which
gave me that official gastroparesis diagnosis.
As soon as a test was done, the technician was able to say to me, you have gastroparesis.
So I actually at the time worked with a girl who also had gastroparesis right across the
hall from me.
(27:56):
That's such a universe moment.
Is that like not people are placed in your life for a reason.
And she had a doctor in Rochester who specialized in gastroparesis, but he was about to retire.
And she said, I just want you to at least have an initial appointment with him because
he's going to set your head straight on gastroparesis.
So I ended up getting in with him.
I forget about that.
(28:17):
And I went in end of September, 2019 and he gave me my official diagnosis of gastroparesis.
And he gave me, he said, I'm going to give you some advice.
And he was like, give yourself five to 10 years to figure, to let your body adjust,
first of all, and to figure out what works and what doesn't work for you.
He goes, it's genuinely that long of a journey for people with gastroparesis.
(28:41):
That trial and error.
Five to 10 years, like the magnitude of like how long that is, is insane.
And I'm just in, I'm not even what, I'm five years in.
So I'm still learning.
I feel like I still have learning to do.
He also told me to drink a Coke with any large meal that I eat.
Because he said, he basically, if you have gastroparesis, you can form a, a bezoar it's
(29:04):
called.
It's basically like a clump of undigested food in your stomach.
And if you get one of those and go into the hospital, they basically put a line down your
throat into your stomach and hit it with straight Coke to like break it up.
Like Coca-Cola Coke.
Coca-Cola.
Yeah.
So crazy to think about how Coke, something in Coca-Cola helps disintegrate.
So I, it's like part of my official diet.
(29:27):
And if I don't have a Coke, all of you in this room have been with me when I'm at a
restaurant and I can't get a Coke and the panic that comes over me is real.
I like every time I do a Walmart order, I just get more Coke because I never know when
room's coming over.
Yeah.
I mean, I have to have it.
I can't get it.
And he also said to me, he said, they're eventually down the line.
They're going to want to remove your colon and turn your intestines.
(29:49):
And he's like, don't ever let them do that to you.
He's like, they're going to push it hard.
Please don't let them do that ever.
He was like, it's going to make your gastroparesis 10 times worse.
He's like, please, if you listen to me on anything, listen to me on that.
And I feel like after your fundoplication surgery, that did not go well.
Why would I?
Yeah.
Right.
So you're probably like, yes, please.
I will never do another surgery like that.
And then he peaced out on me.
(30:10):
He retired and they ended up just putting me with another doctor at the practice who you'll
hear more about her in my next set of stories.
I loved her.
I wish she had never left.
But anyways, so diagnosis, right?
So that's September of 2019.
And I literally ate baby food from September to March, baby food.
(30:33):
I was eating like baby food, SpaghettiOs, baby food, like fruit and vegetables.
And I ate mashed potatoes.
Those, you know, in the freezer section, you can get those smiles.
Yes, smile fries.
Smile fries.
That's really all I ate.
Right.
Because why?
It was so easy to digest.
Yes.
(30:54):
And then COVID hits.
And for everybody else being like isolated in their home for an extended period of time
was their worst nightmare.
Again, the universe was looking out for me and it was exactly what I needed because I
was able to do the most insane elimination diet ever.
I mean, you have to think we went on hiatus from teaching in March.
(31:16):
Right.
All the way.
And we didn't go back to work until December of that next year.
So I had from March to December to do a full elimination diet and I nailed down my safe
foods and my totally unsafe foods.
And I learned what a flare is.
So before I get into that, I just real quick, for those of you who don't know what gastroparesis
(31:39):
is.
I was just going to say, I feel like we need the definition.
What is it exactly?
So it's a condition where the stomach muscles have impaired motility.
So they don't contract and move food through the digestive tract as they should.
So it's a motility disorder, but it actually means so gastro, stomach, paresis, paralysis.
(32:03):
So it means paralyzed stomach.
So my stomach was paralyzed.
And as it turns out, this is the theory of multiple doctors.
The surgeon who did my surgery damaged my vagus nerve.
He nicked my vagus nerve during the procedure.
What is the vagus nerve?
So your vagus nerve is the biggest, most important nerve in your body.
(32:24):
It runs from your brain to your toes.
And it is the primary, it serves for the primary functions of every, everything.
He nicks this.
He nicks it.
Paralyzes my stomach.
Yeah.
I have major problems with him.
And if you really think about it, you were feeling not well and everything, all those
like, like red signs were happening.
(32:47):
And really it wasn't, it was probably because he.
Yeah.
So this whole time that I was suffering, it was because I had gastroparesis.
He nicked my vagus nerve.
And you'll hear in later episodes, he also damaged a few other things, but that's another
story for a different day.
But so basically your food, it's delayed emptying into your stomach.
(33:08):
So, or your intestines, I should say.
So most people don't know this, but your actual stomach is like right under your left breast.
So everything I eat and drink sits in there.
So you guys all, you normal folk digesting about four hours for me, it's about 10 to
12.
Everything I eat sits there for about 10 to 12 hours and if it's something that's hard
(33:31):
to digest, it sits there for even longer.
And then it starts to rot.
And eventually my body is like, okay, this rotting thing isn't going to go down.
So it's got to come out somehow.
So that's where I learned what a flare really was.
And for me in the beginning, my flares were, I was throwing up every 20 minutes for like
(33:52):
three days straight.
It's just like so insane.
I feel like by the end you were like, hospital, not hospital.
What do you do?
You know?
Yeah.
I mean, and it's COVID time.
So it's not like, I literally had to navigate this completely on my own.
I mean, my family was there for me as much as they could be, but we were, COVID was a
(34:13):
scary time.
We didn't know.
Like, you know what I mean?
And I didn't have a boyfriend, husband, significant other, roommate, nothing at the time.
By yourself.
I was by myself.
And you know what?
I was thankful for that in a way because I didn't want anybody to see me.
I was very shameful at first.
And a huge, I have a blog and that has helped me get through a lot of it, but a huge piece
(34:38):
of my story that I've left out of my blog.
And even when I talk to people about my condition, I leave out the part about pooping because
I'm embarrassed.
I know.
Yeah.
There's such a stigma around it, right?
I hate it.
It's a huge part of, so like, I would have those episodes with throwing up, but I also
(34:59):
have episodes where it's the opposite, where I'm pooping every 20 minutes for three days
straight and I have to wear a diaper.
I've had moments.
Yes, yes.
And it can feel embarrassing because of just what society puts on poop.
And I didn't want even my mom and dad to witness me like that.
I don't want anyone to see, I don't want you to see me like that.
(35:20):
I didn't want Connor to see me like that.
I was happy to be by myself, but I also isolated myself quite a bit.
Yes.
I was worried about you during that time.
Yeah.
That was a rough time.
And I went through a lot of feelings.
I mean, definitely my family and friends all went through the stages of grief.
(35:41):
And I think sometimes they still cycle in and out of different phases, depending on
what's happening with my health.
Some of my family members took it harder than others.
Some of them took a lot longer to understand it than others.
And I think some still struggle to fully understand it.
Yeah.
But I went through a phase where I...
(36:03):
So my sweet spot is I have to eat early and anything past three o'clock is really pushing
it for me.
So dinner was out for me and I was a foodie.
My God.
Still am, but...
And she's the best cook ever.
Everything she makes from her mind or recipe book is fantastic.
(36:23):
And yeah.
So I lost that part of me.
When you have gastroparesis, you can't have fiber in any way, shape or form.
So I can't eat vegetables and I can't eat fruit and I can't have red meat.
I basically live off of white starches, potatoes, pasta, rice, bland, not fun things.
(36:44):
Easy to digest.
Right.
I went through a phase where I was like, I wouldn't go out to dinner.
I couldn't handle being in the environment.
I couldn't handle the ambiance.
I couldn't handle the smells.
I couldn't handle watching other people eat.
It infuriated me.
And I refused to take part in anything that had to do with restaurants or dinner.
(37:04):
Holidays were so hard.
Oh my God.
I could cry thinking about it.
When I realized I had to give up Christmas Eve snacks.
Oh my God.
Yes.
Because food is such a part of your life and who you were.
And then to have all of a sudden that be taken away from you, you were grieving the loss.
You were grieving the loss of what was.
(37:24):
And I'll tell you what, I still grieve the loss.
When I see someone eating a steak or a salad, I'm like, I hate you.
Please let me have that.
And there have been times where I put a piece of steak in my mouth and I suck on it and
then I spit it out.
Listen.
It's glorious.
Don't feel bad.
I do the same thing and this is gross.
(37:45):
I spit it out and give it to my dog.
Smart.
Sean goes, what are you, a baby, feeding your baby bird?
I'm like, you know what?
Yeah.
We do what we got to do to get by.
Yeah.
So it's really playing.
And gastroparesis is such a unique beast.
I mean, you can, and I'm hoping that if anyone's listening out there that has gastroparesis
and your story is vastly different than mine, please reach out to us because we want people
(38:09):
on here with different perspectives.
It affects everyone very, very, very differently.
And I'm lucky that I'm able to control mine through diet right now because some people
need a gastric pacemaker or a feeding tube or it completely just wipes out some people.
It's a horrific, horrific disease and you never know what end of it you're going to
(38:34):
get.
And this is why I'm mad that they don't tell you about this prior to, because a major cause
of this condition is having vagus nerve damage during this surgery and nobody tells you that.
It's literally, I say it's ruined my life.
It's ruined my life in a lot of ways, but I've also like learned a lot and come out on the
(38:54):
other end and my flares have changed.
I mean, I went from, I could have flares that lasted for a week where I was just like deathly
ill for a week.
Now it's a day to three days, which is not horrible and it's getting better.
I'm not throwing up as much, but it varies.
Right now it's the pooping that's worse than the throwing up.
(39:16):
But then in a year it might be the opposite.
I just never know.
And that's the thing too, it's the unknown.
I can wake up one day and just be dying and I wake up one day and be fine.
And I never know what that day is going to be.
It makes work really hard.
It's so unpredictable.
I mean, we're teachers.
It's not like we're sitting at a desk where you can slip away and do what you need to
(39:37):
do.
There are students in a classroom waiting for you.
And I've had to advocate.
I mean, in the last school I worked in, I had a principal who had Crohn's disease and
was so understanding, like unbelievably understanding.
And it was wonderful.
But I've really, I've had to advocate in different jobs that I've had for myself.
And I think when you hear our stories, all of our stories, but this one especially, advocacy
(40:02):
is a huge deal for me, for you.
I know I've learned how much you have to be your own advocate because nobody cares about
your own health as much as you do.
And I've gotten to the point where like my current gastro, I'll, I just have to message
her and be like, this is happening, this is happening, this is happening.
(40:22):
I need a stretch.
So like once you have a fund application, sometimes your esophagus needs to be stretched
a little because I can get too restricted and then you can't get stuff down.
She knows.
When they stretch you, do they do balloon dilation or did they do the tool?
Sometimes either or depending on the situation.
And I don't mess around, you know, like, and I'll be honest with you, there aren't a lot
(40:47):
of doctors who know enough about this condition in its entirety.
Like my current gastro for sure doesn't know enough about the condition.
And every time I go to her with an issue, she's like, what about probiotics?
And I have to remind her, remember, I can't take them.
Because by the time they get past my stomach and into my intestines, it doesn't work anymore.
(41:08):
We've discovered like I can't take pills that come in a capsule.
Like the capsule just sits inside of me and I ended up barfing up a capsule like three
days later.
Not even doing what it needs to do.
So there are certain things and I will fight for it.
Every, and I, every time I go to a new doctor, it's like this dread washes over me because
I feel like I have to re-explain my case to everyone.
(41:29):
And it's such a unique case and it changes all the time.
So like, it's hard to keep up with it, but I feel strongly that I have to.
And I will always be advocating for myself, staying on top of the newest medicines, the
newest technology.
And guess what, folks, I'm still on heartburn medicine.
Right.
(41:49):
And the purpose, the main, one of the big sellers for the surgery was so that you did not need
to take it anymore.
Yeah.
And here you are.
Still on it.
So do your research before you ever get a surgery.
Yeah.
I mean, you have to remember some doctors are not out there to help you.
Some doctors are out there to make money.
And I think unfortunately the doctor who did my procedure pushed a surgery on me that maybe
(42:12):
we could have done something different.
Or it was like a couple of days before Christmas.
I kind of feel like the dude was like, I'm about to be on vacation.
And he just kind of like flew through my surgery and jacked me up and he doesn't even know
about it.
There's going to come a day where I tell him.
I know.
I know it's like a written letter or whatever.
But I do think it's a huge, huge issue.
(42:33):
And I'm very passionate about spreading awareness about gastroparesis because it's real.
All these new weight loss medicines people are going on and everything.
I'm like, losing weight isn't worth potentially getting gastroparesis.
You have no idea what your life could be like.
Right.
Right.
Right.
(42:54):
And I was alone for so long.
I know.
I had trouble dating.
Okay.
Let's talk about this.
Like here you are.
It's so unknown with your stomach and what you're eating or what you can eat.
You can't do dinner.
So here she is, single gal.
How are you going to date someone when you can't do dinner, you can't really drink, right?
(43:14):
And it's such a social thing.
And then it's the unknown of like, am I going to be nauseous?
Am I going to have to poop?
Am I going to have to puke?
It's just, it was so stressful.
I feel like for a while you shut down.
Oh, I shut down.
I mean, there was shut down with dating, I should say.
Yeah, I shut down with dating for sure.
I mean, there was a lot of people who, as soon as I said, I can't really eat dinner,
(43:34):
stop talking to me completely.
Then there was like one person I went on a date with who like, remember, got really pushy
with me and I was really sick and I was like, please stop.
I'm really sick and I can't hang out with you.
And I just like brushed him off.
But I do have a husband now.
Okay, well, let's talk about that.
(43:57):
So I did end up finding someone who actually, his initial reach out to me was, I admire
you for putting yourself out there and talking about your health.
And like, because you were very openly sharing your heart and your story through your blog.
Yep.
And he, as soon as he said that to me, as soon as I remember calling room and being
like, he complimented my health journey.
(44:18):
She's like, oh my God, he's the one.
He's the one.
He's the one.
He's also the producer of this podcast.
So shout out to my hubby.
He's the best.
He's the best.
And here's the thing.
I knew it.
I knew it when you guys, because they, you bypassed like dinner.
You guys went to, where'd you go?
Some coffee.
Coffee shop situation.
We got some tea.
Okay.
But this tea place, I mean, who goes for tea till like midnight?
(44:40):
I remember panicking.
I'm like, okay, so either he abducted her and she's somewhere else or this is going
really well.
Like who has tea till like midnight?
But they were teeing it up.
Needless to say, it doesn't have to be a life sentence.
And I know a lot of people with gastroparesis might be listening to this and feeling like
it's a death sentence, but there are things you can do to make it better.
(45:04):
And we will talk about that in future episodes, but just some of the things that worked for
me are acupuncture.
Acupuncture saved my life.
I go like almost religiously every two to three weeks.
The Coke, the Coke has saved my life.
So listening to my body.
So like if I, I can tell the difference between a one-off puke and a, okay, I'm going to
(45:29):
be puking a lot today or I'm going to be pooping a lot today.
Like I know the difference.
You have to really learn to listen to your body.
Yeah.
Because I feel like a lot of times we're in such a culture where it's like work, hustle,
get it done, go to work, show up.
And you have to take care of yourself and you have to listen to your body because you
can't go and teach your students all day long when you're dying, right?
(45:50):
Take care of you, stay home, feel better, and then go when you know you're ready to.
Yeah.
And I always, when things are bad, I fall back to that like bland soft food diet and
sleep.
I sleep a lot.
And on weekends, I need that recharge.
Like I can sleep 10 to 11 hours a night on the weekend.
And I genuinely need that for my body to like heal itself and let the food kind of process.
(46:15):
But I'm smart about how much I eat.
I can't handle much.
I would say like a palm full of food is my, I have one to two meals a day and they're
very small.
Like an English muffin for breakfast and some cream of rice for lunch.
And that's all I eat in a day.
And everybody's like, aren't you starving?
And I'm like, no, I actually feel like I ate 17 meals.
(46:39):
And a big thing for me is water.
I can't drink water.
Which is so crazy because you would think you would want to get it down, right?
To like flush it out, but it just won't go down for you that easy.
And this is one thing that is common with a lot of people with gastroparesis.
Water is hard and I don't know the full reasoning behind it.
I know it's something about the viscosity of it.
(47:01):
It's so like there's nothing to it.
I'm not kidding you.
I could take five sips of water and it feels like the whole entire Atlantic Ocean is swimming
inside of me and it's painful and awful.
Bubbles are my savior.
So like I'm trying to get past soda.
I've just found a sparkling water I like and I'm just easing into the sparkling water world.
But bubbles are what make me better.
(47:23):
And that is the opposite for some people.
Some people with gastroparesis can't have any carbonation.
Right, because it could make it worse.
And I think it just goes back to listening to your body.
You know, sometimes we search for answers elsewhere and I feel like you can listen to Room's Story
and you hear all of this to know that you're not alone.
But at the same point, it's okay if a Coke doesn't work for you or whatever else it may
(47:44):
be.
Listen to your body, you know?
We have to find those things.
So this was the huge turning point for my health.
This is really where my health really deteriorated.
And that, you know, in the next couple of episodes, you'll hear a little bit more about
like what other damage was done during that surgery and then what having gastroparesis
(48:06):
caused with the issues it has caused because it has caused quite a few and they are recurrent
and not fun issues.
Yes.
Heavy one today.
It was a heavy one today.
But at the same point, I feel like getting it out there is doesn't it feel like good
to just say it and get it out there because it could help anybody.
Give you some guidance or make you stop and think before you get that surgery or you move
(48:30):
forward with whatever medication.
Listen to your body.
Do your research.
And lean into the people in your life, you know, to support you and the ones who don't.
There's a thing.
You just got to do what you got to do.
And I did.
I lost some friends along the way.
Yes, you did.
You did.
And you know what?
You find out who your real people are when you go through some dark times with your help
like that.
(48:51):
And the ones that stick around, aka me.
Yep.
These are the good ones.
We get it and we know it.
All right.
So we're going to wrap this one up today.
I know this was a darker episode and we went into this saying like we wanted this to be
a podcast you could come to for happiness and to learn how to thrive and everything.
(49:11):
But I think towards the end of my story, hopefully that came across like this was a very unfortunate
thing for me, but it has also shaped me into the person I am now.
And I become like this advocate and I have this blog and we're doing this podcast and
it's really kind of empowering.
It's been an empowering journey for me.
And I have a full and very, very happy life and it is so possible.
(49:36):
It is.
And honestly, when I think about just like an outsider looking in at everything you've
been through, I feel like your journey with all of this shaped you into who you are today.
And I think about that person is exactly who you need to be, you know?
And it's like sometimes we have to embrace the journey and we have to embrace what we're
(49:58):
going through because it's making you and preparing you for whatever is next to come.
And you know, if we think about it, you're on this IVF journey.
You're going to have a baby.
Like this is really exciting.
And I almost where I think a lot of people would be in a position of, you know, fear,
worry, unknown.
You've been through so much already.
(50:18):
You are going to do this with class and ease and you're going to pop out the most adorable
little baby ever.
Oh, yes.
Or babies.
You never know.
You never know.
But right when you think about it, keep that in mind.
Everybody who's listening that even through the darkest times, there is everything's happening
not just to you, but for you and moving you where you need to go and preparing you for
(50:39):
what's next.
And there's always something to be grateful for in those moments.
Like I think about when you were just talking about COVID, right?
Like that was such a dark time and we were like, we love COVID.
Not that we love COVID.
I shouldn't say we loved it, but we loved the isolated time where you got to figure
out your diet and work through your health issues.
It was a blessing in disguise.
Right.
Exactly.
(51:00):
There's always something to be grateful for.
There's always some type of something that glimmer of sparkle, of hope.
I've said it so many times.
The universe really does have your back.
Like look at all the instances where the universe placed what I needed right in front of me
at the time that I needed it.
Like as a girl.
Hey, Carrie.
Anthony.
My husband.
(51:20):
The girl who worked across the hall from me who had gastroparesis randomly.
Like there's just so many things.
So really it can be a positive journey.
It is.
When you're in those moments, like looking for those, those little gems of hope and possibility
and reassurance.
You know what really saved me for a long time?
What?
Was every night I would sit down and write down three things I was grateful for.
(51:43):
So even if it was the worst day of my life, I found three glimmers of hope every single
day and I did that for almost two years and that helped me so much.
So even something as small as that can just help you to see that even though you're going
through something hard, you have good things in your life.
Right, right.
Yes.
The power of writing and journaling.
I mean, and look that I feel like didn't that essentially evolve into your blog and you
(52:04):
found release in the writing of it all.
And that just inspired us sitting here today doing this podcast with you.
Everything leads to something.
It does.
It does.
This beautiful journey that we're on and I love that we're sharing it with everyone.
It feels good to share.
It does feel good.
I hope you guys feel that way too.
Yeah, same.
So thanks for tuning in to us.
(52:25):
So we'll catch you next time.
Bye.
Bye.
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