June 27, 2025 • 29 mins
Welcome to Chronically The Sickest - the sickest podcast you know.
On today’s episode I’m joined by artist, Amanda.
We get into brain surgery, helpful supplements and what symptoms could be adrenal insufficiency.
Follow Amanda on Instagram @itsamandaliz
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:04):
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Welcome, Amanda to Chronically
(00:34):
the Sickest Podcast. How are you?
Good. How are you doing?
I am doing well. It is bright and sunny here in
California today, so I'm having a good time.
I am so excited to have you on the podcast.
For the listeners at home who may not know who you are, can
you tell us a little bit about yourself?
(00:55):
Yeah, My name's Amanda Saint Clair.
I live in the OK C metro area, but I'm from Pittsburgh.
Pai work virtually. I work from home.
I've been, I would say chronically sick for two years
now. And it's it's been a journey.
I'm glad to be here today. Well, I am glad that you're here
as well. And I mean, the listeners at
(01:17):
home can't see, but like your background is so beautiful and
fun and lively. So I, I'm really hoping that
that really shines through in our interview today.
Oh, I hope so. Well, now that we, you know,
know a little bit about you, I wanted to ask the big question.
What do you think makes you chronically the sickest person
you know? Man, it's probably the amount of
(01:40):
medical information and COVID conscious information I share
online. I am a big proponent of basking.
The pandemic is still ongoing and that is a major reason as to
why I got sick and I will alwaysbe reminding everyone to mask
up. Heck yeah that is a great
answer. We love a COVID info warrior.
We we need a few more of you outin the world.
(02:03):
Yes. Well, that was a really good
answer and it kind of leads us into our topic today.
Like most people, most spoonies you have multiple diagnosis, but
today we wanted to focus on adrenal insufficiency, correct?
Yeah, that in my experience withhaving a benign brain tumor.
(02:25):
Wow, see, like that is such a, an interesting experience and
I'm so excited to talk to you about that.
So tell me a little bit about that experience.
You had a a brain tumor, you've had it removed.
What? What was that experience like?
It was, it was honestly, I didn't feel real any every
single moment of the experience I was like, I feel like this
(02:47):
isn't real. Like I, I was waiting for it to,
to be like the results come back, be like, oh, never mind.
It was just a smudge. You know, it was just a smudge.
It wasn't, it wasn't a tumor. It was a, it was a smudge.
But basically about two years ago, I really bad migraine and
it made me lose my feeling on the left side of my body and I
couldn't speak like it was stroke like, but I still had
(03:10):
strength in my hands. So thankfully I have a cousin
who's in, in the medical field. So I called him and he was like,
as long as you can like still use your hands.
That's not technically a stroke.So it's probably just a really
bad migraine. So ended up calling my PCP and
my PCP ordered an MRI mostly because I had been having
chronic issues already leading up to this point, but I didn't
(03:33):
have any like big testing done yet.
But I got that MRI and I got theresults back that night and I'm
just chilling. I'm sitting in the bathtub kind
of just wanting to relax and I get the results.
And at the very bottom it reads possible pituitary adenoma.
And I'm like, what is that? So of course I Google it and I'm
(03:55):
like, like, this is something that is actually like the most
common brain tumor to have really it, it can really cause a
lot of really, really strange symptoms.
And it really just came out of nowhere.
Yeah, Oh my goodness. Wow.
Imagine having just a self-care night and then being like, Oh my
gosh, my life has changed forever.
(04:16):
Yeah, and like it. To me, I'm like, this can't be
real. And I texted my my cousin and
I'm like, hey, this is weird. And I don't remember what he
responded with or anything like that, but but yeah, I don't.
I don't remember feeling scared though.
I'd never felt scared and I never felt like it was like the
worst thing because I had already been feeling so terrible
(04:37):
anyways at that point that I knew I felt like something worse
was coming. Almost like I felt like, I felt
like the pituitary tumor was just like a weird thing, but it
didn't makes sense to me at the time.
I guess it was just very, it wasa very blurry experience because
at that time I had also started experiencing really bad fatigue
(04:59):
as well too, Yes. I don't get the brain tuber
experience, but I get the fatigue experience.
Yeah, yeah. Which you said that the
pituitary tumors, you said that there's a lot of symptoms that
come with that. Can you explain a few of those?
Yeah, So a couple of mine were low cortisol, extreme fatigue.
(05:23):
I have had a lack of periods since I was younger.
I've been on the I've had PCOS since I was younger.
So we thought that that was because why I wasn't getting
periods. But it apparently can be the
pituitary that causes it. And then like other things like
deep, what is it called? Stretch marks, deep stretch
marks. And then dark like skin folds,
like armpits, necks, neck, behind your ears, like your skin
(05:46):
will get really, really dark if your cortisol, I think, is too
low or too high. I forget which one that is.
But but yeah, that's one of the symptoms too.
I didn't have that symptom. I really just have and still
continue to have very significant fatigue and POTS
like symptoms as well. That seems to go hand in hand
with the pituitary tumor. OK, that's good to know.
(06:10):
Feel sorry. I'm like laughing cuz I'm like
these types of tumors and thingslike that.
All of the symptoms are very much just kind of like stuff
that you could experience as someone with chronic illness.
You're just like, yeah, fatigue or a a big component of a
(06:30):
pituitary tumor is hormonal changes and those symptoms can
be so common. So it's just so interesting to
hear you talk about these things.
Yeah, yeah, yeah. And, and right before I found
out that I had the tumor or well, not right before I found
out that or well, I got COVID and that really made me that
(06:55):
kicked me down. Like I got really sick after
having COVID for the second timein early 2023.
So I've been, I've been sick nowfor, for two years.
This month actually it's March 30th was was the day I got I got
COVID the second time. I mean, happy anniversary I
guess. Yeah, I mean, it's one way to
celebrate it. I did.
(07:16):
I did, though whenever I did have the pituitary out, I did
throw a a celebration party. I named the tumor Jeff and we I
got a birthday cake and we wished him a a goodbye.
Oh my gosh, I love that, first of all.
But wait. OK, so bridge the gap for me
between when you named Jeff and threw him a party and where we
(07:38):
are right now, where you just found out that you have it.
Like what was the process after that?
Like was it like a quick like, Oh my gosh, we have to get that
out? Or was it like a watch and see?
Yeah, no, it was like, but OK, so like in March 2023, I got
COVID and I really started having all of these weird
symptoms, including the migraines and that type of
(07:59):
thing. April 2024 is when I got the
tumor removed. So in that first year of having
COVID, I barely could walk. I barely could do anything.
And I'm, and I'm still honestly at this point, like I still AM
dynamically disabled. So like some, some days I'm able
to walk like 700 feet. It just depends.
(08:20):
But the, the, the, the really from the time when I learned
about the pituitary tumor to nowoutside of symptoms has just
been a doctor's appointment after doctor's appointment after
a doctor's appointment, just following up tracking symptoms,
tracking hormones, that type of thing.
The, I was first sent to, so I was first seeing a very basic
(08:43):
nurse practitioner and she really didn't have the time to
spend with me that I needed to. And so I ended up finding a
direct primary care doctor, which little DPC in Oklahoma
City. I love them so much, so shout
them out. But they really helped me
understand what is going on and kind of be my home base for my
(09:05):
specialists. So they would, we would
reconvene every month or so after each appointment and they
would, they would basically bridge the gap between what the
specialist was telling me and what I actually needed to know.
It was just so much jargon, so much confusion.
The main confusion has always been from endocrinology and
endocrinology is, but I don't know if it's just in Oklahoma
(09:26):
City. They are just very, very booked
up and they just don't have the time to really explain
everything. So I was like really confused as
to why I need the pituitary, whyI need the tumor out, why I
couldn't just manage with meds, that type of thing.
So this time last year I went tothe Mayo Clinic as well.
So during that time, I also wentand saw an endocrinologist.
(09:48):
I got just basically like confirmation that my care here
in Oklahoma is actually really, really good.
So my my endocrinologist was like, yeah, this tumor needs to
come out. He's like, yeah, this needs to
be removed. And, and to me, I'm like, you're
an endocrinologist, You're not aneurosurgeon.
Like, why are you telling me this?
And I mean, like, I guess he's adoctor.
(10:10):
He should know, but it wasn't making sense to me as to why the
surgery needed to happen. So it took a few months, a lot
of appointments with surgeons, and I had to go to an eye
specialist because the pituitarytumor, for those who don't know,
it's literally right, right behind the pituitary land, I'm
sorry, is right behind your eyes.
So it's like right behind your nose.
(10:32):
And it sits in front of the brain.
So it's like, it's just right. Yeah.
Like right there, right? Right in the middle of your face
basically. Where your where your glasses
sit. Exactly, exactly.
So one of the first things that happens is that people will lose
their vision because the tumor will get too big or it'll like
move your optic nerve. So it wasn't doing that.
(10:52):
It wasn't doing anything like that.
It was just causing my pituitaryor my hormones to be off just
enough to be concerning, and we don't really know where the
tumor came from. It's interesting because my
sister and my aunt both have issues with their pituitaries as
well. There are apparently no genetic
(11:12):
correlations, but I just think that's really interesting to to
hear. Yeah.
I mean, yeah, not everything hasa genetic component, but it's so
like, what a odd experience to be like, Oh my gosh, someone in
my family also deals with this. So yeah, sure, there might not
be science behind it saying, yeah, if your mom has it, you
(11:33):
have it, but it's still so interesting.
Yeah. One other thing I forgot to
mention was that pituitary insufficiency, adrenal
sufficiency, it can cause hair loss.
Not like all my hair is gone because of it, but I do keep my
hair short because it does. My hair is just thin because of
my autoimmune issues already so I just wanted to put that in
(11:53):
there. No, thank you.
It's it's good to have the full picture of what a what a
condition looks like and then also the diagnosis process.
So you said it took like a year from when you found out to
actually getting it out. And once you had that surgery,
which is like crazy, to be able to be like, Oh yeah, I had brain
(12:14):
surgery for funsies. Yeah.
And and the brain surgery itselfwas easier than I would say a
lot of my medical like. Really.
Procedures I've ever had, like it was, it was so easy, like I
was in the ICU and everything and my nurses were like, Are you
sure you're OK? You're not feeling any pain,
You're OK. Like I felt no pain from the
(12:36):
surgery at all. Like it was, it was wild.
It was like a really good experience.
Wow, OK. Yeah, right.
Like the the neurosurgeon, the people on the care side of
things, the nurses were all like, you're going to feel like
you got hit in the face by a bat.
But I think, I think the nurses at OU Medical just knew what
(12:58):
they were doing. They had me, the paid meds
turned up and I didn't feel anything.
And it was just, it was just such an easy experience.
And then after the surgery, I had to go back and get AMRI.
A month later it did show there is.
This is your friendly reminder that you are listening to this
(13:20):
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Click the Patreon link in the description to get access to
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(13:40):
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(14:06):
Like residual, like stuff left from the surgery, but I have to
go back this year to get anotherscan and I'll have to go four
more years after that to get scans as well.
Likelihood of it coming back is pretty low, but I mean it could
happen, sure. I mean, there's a chance of
everything all the time. OK.
That was going to be one of my questions was, is it kind of
(14:27):
like endometriosis where if you leave a little bit it'll grow
back or is it more just like it's kind of just there?
Yeah, it sounded like they got like all of it, most of it at
least like the the stuff that was like messing with my
pituitary gland. But I did just get test results
back last week that I am still perimenopausal, kind of in that
(14:48):
weird middle, middle stage with my estrogen and progesterone.
So that's a little frustrating. And my cortisol levels are super
low too. So I actually have to take a
daily cortisol medicine every day at 10 AM, otherwise I will
literally have to go to the ER. Oh, Oh my gosh.
OK. Yeah, yeah.
(15:10):
So I. Am in surgical menopause, so
hearing your experience being essentially perimenopausal like
you said because of adrenal insufficiency and that tumor,
it's such a relatable experience.
So thank you. Yeah, I mean, that's something
that I've known since I was veryyoung.
I've never been normal with my hormones, with PCOS.
(15:34):
They've always been all over theplace.
And then now, like even still, they're kind of all over the
place. I mean, it's, it's not, I
wouldn't say nice. I'm very, very lucky because I
don't want kids. My partner doesn't want kids.
And it just makes our lives a little bit easier.
Like knowing that I don't reallyhave to worry about that.
But if I did want kids or, you know, that would be so, so hard
(15:55):
and devastating. I just, I'm just very lucky
that, but not at all. I really hate my body sometimes,
but I'm very lucky that that I was chosen for this.
I feel like, you know what I mean?
Like I'm glad it happened to me and not someone else who wanted
kids. Yeah, I hear you.
I hear you. I think you are allowed to carry
both things and be like, I am lucky that this one aspect of my
(16:19):
life did not like directly affect this.
And on the other hand still be like but this still sucks balls.
Yeah, yeah, yeah. It really, I mean it.
Chronic illness, like, and I feel like people who don't, who
aren't chronically sick feel this way, but being chronically
sick. And I don't want to say being
(16:40):
close to death, but being in that weird middle ground of
like, I can't do things that I want to do as much as I used to,
to being like almost like a, a shut in at certain points.
You know what I mean? It makes you realize what is
actually important and like, move your life to surround that,
you know what I mean? Like, it's made me realize that
(17:02):
my the things that I love are inthis home.
Like the things that I love are my family.
The things that I love are my dogs.
You know what I mean? So like, I Orient my life around
things that I enjoy. And I'm not so sure I would have
done this if I wasn't sick. I think part of it is, you know,
to keep my positivity kind of up.
(17:23):
Like I keep busy with painting and keep busy with creative
projects. But yeah, I mean, it kind of
forced me to be like, I need to have fun every day or what's the
point of life? Right, I love that.
That's a really good outlook to have with everything going on.
Speaking of kind of having a positive outlook and using that
(17:44):
as a tool to manage like your symptoms and what you're
experiencing. Talk to me a little bit about
some other tools that you're using.
I know you said that you're on amedication that you take every
day at 10 AM so you don't die, but like what else are you doing
post surgery to kind of manage your symptoms?
Like what can you tell other spoonies?
(18:08):
Potsies, listen up. We both know that precinctopy
sucks. Fainting to passing out when
you're alone though, that is 2 thumbs down.
It's so nerve wracking. Like what if I pass out and hit
my head or I start getting dizzywhile I'm driving?
Am I going to be safe? Or just in general am I going to
(18:30):
be safe as a disabled woman? That anxiety, that is what gets
you. But I don't have that anymore.
Well, I do have anxiety. I am an OCD girlie, but not
about passing out or my safety because I just click my invisi
wear necklace and both my familyand emergency personnel are
(18:52):
alerted. The dizzies are scary no matter
how many times it happens. But knowing that I have a backup
plan is what makes me feel a little bit better, so maybe
that'll help you too. Using Code Sickest for 10% off
on your Invisibleware purchase at the link in your description
is an option. Sending you salty vibes.
(19:13):
Okie dokie. Anyway.
Wow. Yeah.
I mean, my life was thrown upside down because of the
tumor, honestly. And I wouldn't actually, I would
say more long COVID than tumor because it's the fatigue.
And I mean, it could be the tumor too, but just the fatigue
(19:33):
really made me slow down. I was working a demanding sales
job in person. I was hybrid at the end, but it
was just so hard to keep up with.
And I didn't realize how much I was giving of myself for that
sales job just to make money. Not just to make money.
We have to make money, but to make more money I was
sacrificing so much so I ended up switching to a full work from
(19:56):
home position. I'm on the back end of the
software that I was selling, so now I'm more customer facing and
a little bit slower. Day-to-day, but that in itself
made such a difference for my life and my ability to do other
things instead of going to work and feeling dead at the end of
the day and like literally just going to bed, barely talking to
(20:18):
my partner and going to bed likeit was it was hellish.
It was hellish. It was honestly terrible.
And then I got was super lucky, got the position on my current
team and it has just been a breath of fresh air.
It I feel so well supported by current job.
So I can't say how important just having a good job is,
(20:38):
especially when you're sick, like you when you're sick, I
feel like you have to your health has to be the number one.
It cannot be work. It cannot be friends, it cannot
be family like it has to be health.
And I would say especially when your symptoms are flaring right.
But now I'm able to put my health first and schedule my
(20:58):
appointments, my day around my count, my own actual calendar.
And along with that as well too,surrounding myself with people
who are supportive, who do show solidarity, who are here.
How can I help you not? Hey, hurry up, You're, you're
being too slow. You know what I mean?
Because I, I'm the slow old grandma now.
(21:19):
I cannot walk fast. I can't run.
I can't dance like I used to. Like I am literally as slow as a
turtle like. A very.
Cute, but I get to see more things, I get to enjoy more
things at the same time too. And then I also use a visible
armband as well to do pacing forpacing and keeping track of my
pots and that type of thing. Yes, that's very smart.
(21:43):
I've heard a lot of good things about the the armband.
I'm just using the free version right now, but even that has
been so helpful to kind of see what's going on but.
Definitely OK. I like that.
So prioritizing REST, finding a good job if working is something
that you want to do. And like you said, really.
(22:03):
Yeah, for me, for me not workingwas not an option.
I looked into, you know, going on disability and we didn't have
the ability to really go for it last year.
But I just got really lucky withmy job and my job is is really
low key and I just wish every chronically I'll person could
have a job like I have, you know, like every disabled person
(22:26):
needs the ability to have an easy job, an accessible job is
what I mean. My job is not easy.
It's very accessible, I should say.
Yes, no, no, no. That's a great distinction
because you're absolutely right.I feel like yes, a lot of people
who are disabled can't work. Like there isn't a lot of jobs
that they can work. And so that in itself is not
(22:49):
easy, but it's so nice to like have a reason to get up in the
morning and be like, I have tasks to do.
I have something that makes my life a little more fun and
something that I get up like a reason to get up in the morning
that isn't just like I have to feed myself and say hi to my
partner. So yes, I love what you said
(23:09):
about finding a good job becausethey're hard to find but
accessible. Jobs.
They're good. Yeah.
Yeah, yeah, I get that. I'm I'm very lucky.
Like I work at a job that my desk is all bright pink and
orange and like I listen to music all day while I do my job
and. That's glorious.
(23:30):
That's the dream. Well, yeah.
And it seems like you're also kind of living the dream, like
you're working from home. You said you you love what you
do. And like, that is such a great
point. So thank you for touching on
that. Yeah.
I and, and at this point in my life, like my husband is, is
possibly going into law school. So we're about to head into a
really, really crazy and busy season and I'm just trying to
(23:53):
soak it all up and really lay use his time as like a good
foundational time to set us up for the next 4 years of him
being in school part time. It's going to be, it's going to
be hard because he is, he makes all the dinners he, he does
laundry like he's everyone needsmy husband as well.
(24:14):
And yeah, I we just, we're aboutto have a big change and we're
excited, but it's scary. Oh my gosh, I'm excited and also
a little scared for you. That's.
Yeah. What a life change.
So besides kind of the like abstract tools in the sense of
like prioritizing REST, finding a good job, making sure you have
(24:35):
a support system, do you have any physical tools?
Like I know you said you're on like a medication.
Are you like a fan of a certain heating?
Pad let me pull up my list yeah I, I unfortunately, have to take
a lot of medication I'm on, you know, some immunosuppressants,
I'm on pain medicine at night yeah a good, good deal of
(24:57):
supplements and yeah, it's very very important they're in there
they're keeping me moving I'm. OK, wait, OK, you said that you
use supplements. I promise.
I have a disclaimer that says that we're not medically
responsible. People do shit.
But what supplements are you using?
Like, can you share for anyone who's dealing with adrenal
insufficiency themselves? Like any you know, like top
(25:19):
three. Yeah, as I'm literally pulling
out my list. You're good.
I was like, you know what? Wait, I was like, I have that
question and I know that someonewill really benefit from that
they. Have me on NAC two times a day
and then really just probiotics.Are probiotics good for hormonal
(25:45):
imbalances? No, I don't think there are any
vitamins for for like adrenal insufficiency or hormonal
regulation. I think those are more, those
are more of the actual prescriptions I'm on.
I have a lot of hormones that I'm that I have to be on
unfortunately. I hear you.
(26:06):
I, I was on progesterone for a little bit after surgery, but I
was taking Chasbury or Vitex, which I know has been really
good for regulating PMS or hormones.
So maybe that'd be interesting for someone with adrenaline
deficiency. But also I'm not a doctor, so I
(26:27):
don't know. Yeah, but thank you for sharing
that. I appreciate.
It on a a very, I feel like goodregimen right now and I'm
nervous to change it in any aspect.
So I feel like I'm being proppedup just right, you know what I
mean? But I also use a cane or a
rollator and I actually am starting the process of of
(26:51):
considering a motorized wheelchair.
So I'm super scared, but super excited because it would just
open up so much, so much abilities for so many things for
me to do. And it's just my legs are so
tired all the time and I'm sitting on this little stool
that I just wheel around the house everywhere or into the
(27:12):
bathroom to do my makeup or whatever.
But I need to get something kindof to, to help me move around a
little bit better on my bad daysbecause bad days are hard.
But but yeah, mostly the cane, mostly the rollator shoe
inserts. I have really bad foot pain due
to neuropathy and I've gotten some new shoe inserts from my
podiatrist and they are working very well.
(27:35):
Oh my gosh, OK I kind of love what you said about like a
rolling stool because sure, not everyone can afford to get a
rollator or a wheelchair. God forbid those things are
expensive as cuss, even with their insurance.
So yeah, get I'm kind of imagining, you know, those
little stools that the doctors sit on in their office,
literally. OK, it's that, but.
(27:56):
Smaller, it's a little, it's a little bit top heavy, so I'm
worried that I'll fall over one day, but I think it's just part
of the fun. Hey, you know what?
You could fall over from a higher height if you were
standing. So at least when you're sitting
and rolling around, no. Literally.
Literally. Well, thank you.
Those, I feel like are some goodoptions for maybe the listeners.
(28:18):
Wow, for the listeners listening, for the people
listening, that's a really good array of options.
So thank you for sharing. Maybe if they want to chat with
you some more, kind of see, see who you are, what you're doing,
where can they find you? Are you on social media?
Yeah, I would say the best placeto find me is on Instagram and
(28:39):
it's Amanda, Liz on Instagram and I think on Fred's too.
Well, thank you again. I I really do appreciate you
being on the podcast listeners, That is all we have for you
today. Otherwise, I'm Clark, this is
Amanda, and this has been chronically the sickest podcast
(28:59):
you know. That's all folks.
Thank you so much for listening.If you like this episode, click
that follow up button on your podcast app of choice to get
notified every other week. You can find the podcast on
Instagram and TikTok at Chronically the Sickest Podcast.
Let me know if you have any questions or just want to chat.
(29:22):
I love hearing from y'all. Until next time, I'm Clark, and
this has been Chronically the Sickest podcast you know.
Disclaimer, this is a conversational podcast and while
we may share a diagnosis journey, symptoms, and treatment
plan, this is not medical advice.
(29:42):
If you have any questions regarding your health, please
reach out to your doctor and have a great day.
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Welcome, Amanda to Chronically
(00:34):
the Sickest Podcast. How are you?
Good. How are you doing?
I am doing well. It is bright and sunny here in
California today, so I'm having a good time.
I am so excited to have you on the podcast.
For the listeners at home who may not know who you are, can
you tell us a little bit about yourself?
(00:55):
Yeah, My name's Amanda Saint Clair.
I live in the OK C metro area, but I'm from Pittsburgh.
Pai work virtually. I work from home.
I've been, I would say chronically sick for two years
now. And it's it's been a journey.
I'm glad to be here today. Well, I am glad that you're here
as well. And I mean, the listeners at
(01:17):
home can't see, but like your background is so beautiful and
fun and lively. So I, I'm really hoping that
that really shines through in our interview today.
Oh, I hope so. Well, now that we, you know,
know a little bit about you, I wanted to ask the big question.
What do you think makes you chronically the sickest person
you know? Man, it's probably the amount of
(01:40):
medical information and COVID conscious information I share
online. I am a big proponent of basking.
The pandemic is still ongoing and that is a major reason as to
why I got sick and I will alwaysbe reminding everyone to mask
up. Heck yeah that is a great
answer. We love a COVID info warrior.
We we need a few more of you outin the world.
(02:03):
Yes. Well, that was a really good
answer and it kind of leads us into our topic today.
Like most people, most spoonies you have multiple diagnosis, but
today we wanted to focus on adrenal insufficiency, correct?
Yeah, that in my experience withhaving a benign brain tumor.
(02:25):
Wow, see, like that is such a, an interesting experience and
I'm so excited to talk to you about that.
So tell me a little bit about that experience.
You had a a brain tumor, you've had it removed.
What? What was that experience like?
It was, it was honestly, I didn't feel real any every
single moment of the experience I was like, I feel like this
(02:47):
isn't real. Like I, I was waiting for it to,
to be like the results come back, be like, oh, never mind.
It was just a smudge. You know, it was just a smudge.
It wasn't, it wasn't a tumor. It was a, it was a smudge.
But basically about two years ago, I really bad migraine and
it made me lose my feeling on the left side of my body and I
couldn't speak like it was stroke like, but I still had
(03:10):
strength in my hands. So thankfully I have a cousin
who's in, in the medical field. So I called him and he was like,
as long as you can like still use your hands.
That's not technically a stroke.So it's probably just a really
bad migraine. So ended up calling my PCP and
my PCP ordered an MRI mostly because I had been having
chronic issues already leading up to this point, but I didn't
(03:33):
have any like big testing done yet.
But I got that MRI and I got theresults back that night and I'm
just chilling. I'm sitting in the bathtub kind
of just wanting to relax and I get the results.
And at the very bottom it reads possible pituitary adenoma.
And I'm like, what is that? So of course I Google it and I'm
(03:55):
like, like, this is something that is actually like the most
common brain tumor to have really it, it can really cause a
lot of really, really strange symptoms.
And it really just came out of nowhere.
Yeah, Oh my goodness. Wow.
Imagine having just a self-care night and then being like, Oh my
gosh, my life has changed forever.
(04:16):
Yeah, and like it. To me, I'm like, this can't be
real. And I texted my my cousin and
I'm like, hey, this is weird. And I don't remember what he
responded with or anything like that, but but yeah, I don't.
I don't remember feeling scared though.
I'd never felt scared and I never felt like it was like the
worst thing because I had already been feeling so terrible
(04:37):
anyways at that point that I knew I felt like something worse
was coming. Almost like I felt like, I felt
like the pituitary tumor was just like a weird thing, but it
didn't makes sense to me at the time.
I guess it was just very, it wasa very blurry experience because
at that time I had also started experiencing really bad fatigue
(04:59):
as well too, Yes. I don't get the brain tuber
experience, but I get the fatigue experience.
Yeah, yeah. Which you said that the
pituitary tumors, you said that there's a lot of symptoms that
come with that. Can you explain a few of those?
Yeah, So a couple of mine were low cortisol, extreme fatigue.
(05:23):
I have had a lack of periods since I was younger.
I've been on the I've had PCOS since I was younger.
So we thought that that was because why I wasn't getting
periods. But it apparently can be the
pituitary that causes it. And then like other things like
deep, what is it called? Stretch marks, deep stretch
marks. And then dark like skin folds,
like armpits, necks, neck, behind your ears, like your skin
(05:46):
will get really, really dark if your cortisol, I think, is too
low or too high. I forget which one that is.
But but yeah, that's one of the symptoms too.
I didn't have that symptom. I really just have and still
continue to have very significant fatigue and POTS
like symptoms as well. That seems to go hand in hand
with the pituitary tumor. OK, that's good to know.
(06:10):
Feel sorry. I'm like laughing cuz I'm like
these types of tumors and thingslike that.
All of the symptoms are very much just kind of like stuff
that you could experience as someone with chronic illness.
You're just like, yeah, fatigue or a a big component of a
(06:30):
pituitary tumor is hormonal changes and those symptoms can
be so common. So it's just so interesting to
hear you talk about these things.
Yeah, yeah, yeah. And, and right before I found
out that I had the tumor or well, not right before I found
out that or well, I got COVID and that really made me that
(06:55):
kicked me down. Like I got really sick after
having COVID for the second timein early 2023.
So I've been, I've been sick nowfor, for two years.
This month actually it's March 30th was was the day I got I got
COVID the second time. I mean, happy anniversary I
guess. Yeah, I mean, it's one way to
celebrate it. I did.
(07:16):
I did, though whenever I did have the pituitary out, I did
throw a a celebration party. I named the tumor Jeff and we I
got a birthday cake and we wished him a a goodbye.
Oh my gosh, I love that, first of all.
But wait. OK, so bridge the gap for me
between when you named Jeff and threw him a party and where we
(07:38):
are right now, where you just found out that you have it.
Like what was the process after that?
Like was it like a quick like, Oh my gosh, we have to get that
out? Or was it like a watch and see?
Yeah, no, it was like, but OK, so like in March 2023, I got
COVID and I really started having all of these weird
symptoms, including the migraines and that type of
(07:59):
thing. April 2024 is when I got the
tumor removed. So in that first year of having
COVID, I barely could walk. I barely could do anything.
And I'm, and I'm still honestly at this point, like I still AM
dynamically disabled. So like some, some days I'm able
to walk like 700 feet. It just depends.
(08:20):
But the, the, the, the really from the time when I learned
about the pituitary tumor to nowoutside of symptoms has just
been a doctor's appointment after doctor's appointment after
a doctor's appointment, just following up tracking symptoms,
tracking hormones, that type of thing.
The, I was first sent to, so I was first seeing a very basic
(08:43):
nurse practitioner and she really didn't have the time to
spend with me that I needed to. And so I ended up finding a
direct primary care doctor, which little DPC in Oklahoma
City. I love them so much, so shout
them out. But they really helped me
understand what is going on and kind of be my home base for my
(09:05):
specialists. So they would, we would
reconvene every month or so after each appointment and they
would, they would basically bridge the gap between what the
specialist was telling me and what I actually needed to know.
It was just so much jargon, so much confusion.
The main confusion has always been from endocrinology and
endocrinology is, but I don't know if it's just in Oklahoma
(09:26):
City. They are just very, very booked
up and they just don't have the time to really explain
everything. So I was like really confused as
to why I need the pituitary, whyI need the tumor out, why I
couldn't just manage with meds, that type of thing.
So this time last year I went tothe Mayo Clinic as well.
So during that time, I also wentand saw an endocrinologist.
(09:48):
I got just basically like confirmation that my care here
in Oklahoma is actually really, really good.
So my my endocrinologist was like, yeah, this tumor needs to
come out. He's like, yeah, this needs to
be removed. And, and to me, I'm like, you're
an endocrinologist, You're not aneurosurgeon.
Like, why are you telling me this?
And I mean, like, I guess he's adoctor.
(10:10):
He should know, but it wasn't making sense to me as to why the
surgery needed to happen. So it took a few months, a lot
of appointments with surgeons, and I had to go to an eye
specialist because the pituitarytumor, for those who don't know,
it's literally right, right behind the pituitary land, I'm
sorry, is right behind your eyes.
So it's like right behind your nose.
(10:32):
And it sits in front of the brain.
So it's like, it's just right. Yeah.
Like right there, right? Right in the middle of your face
basically. Where your where your glasses
sit. Exactly, exactly.
So one of the first things that happens is that people will lose
their vision because the tumor will get too big or it'll like
move your optic nerve. So it wasn't doing that.
(10:52):
It wasn't doing anything like that.
It was just causing my pituitaryor my hormones to be off just
enough to be concerning, and we don't really know where the
tumor came from. It's interesting because my
sister and my aunt both have issues with their pituitaries as
well. There are apparently no genetic
(11:12):
correlations, but I just think that's really interesting to to
hear. Yeah.
I mean, yeah, not everything hasa genetic component, but it's so
like, what a odd experience to be like, Oh my gosh, someone in
my family also deals with this. So yeah, sure, there might not
be science behind it saying, yeah, if your mom has it, you
(11:33):
have it, but it's still so interesting.
Yeah. One other thing I forgot to
mention was that pituitary insufficiency, adrenal
sufficiency, it can cause hair loss.
Not like all my hair is gone because of it, but I do keep my
hair short because it does. My hair is just thin because of
my autoimmune issues already so I just wanted to put that in
(11:53):
there. No, thank you.
It's it's good to have the full picture of what a what a
condition looks like and then also the diagnosis process.
So you said it took like a year from when you found out to
actually getting it out. And once you had that surgery,
which is like crazy, to be able to be like, Oh yeah, I had brain
(12:14):
surgery for funsies. Yeah.
And and the brain surgery itselfwas easier than I would say a
lot of my medical like. Really.
Procedures I've ever had, like it was, it was so easy, like I
was in the ICU and everything and my nurses were like, Are you
sure you're OK? You're not feeling any pain,
You're OK. Like I felt no pain from the
(12:36):
surgery at all. Like it was, it was wild.
It was like a really good experience.
Wow, OK. Yeah, right.
Like the the neurosurgeon, the people on the care side of
things, the nurses were all like, you're going to feel like
you got hit in the face by a bat.
But I think, I think the nurses at OU Medical just knew what
(12:58):
they were doing. They had me, the paid meds
turned up and I didn't feel anything.
And it was just, it was just such an easy experience.
And then after the surgery, I had to go back and get AMRI.
A month later it did show there is.
This is your friendly reminder that you are listening to this
(13:20):
for free, learning about chronicillness, mental health, and
other important topics for free.But this does cost time and
money to make, and you could be getting a lot more.
Click the Patreon link in the description to get access to
video episodes, free merch, and bonus interviews where we may
(13:40):
talk about things that have to be cut from the main apps.
And did I mention that there's no ads?
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Give me a dollar and I will giveyou lots of cool stuff in
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(14:06):
Like residual, like stuff left from the surgery, but I have to
go back this year to get anotherscan and I'll have to go four
more years after that to get scans as well.
Likelihood of it coming back is pretty low, but I mean it could
happen, sure. I mean, there's a chance of
everything all the time. OK.
That was going to be one of my questions was, is it kind of
(14:27):
like endometriosis where if you leave a little bit it'll grow
back or is it more just like it's kind of just there?
Yeah, it sounded like they got like all of it, most of it at
least like the the stuff that was like messing with my
pituitary gland. But I did just get test results
back last week that I am still perimenopausal, kind of in that
(14:48):
weird middle, middle stage with my estrogen and progesterone.
So that's a little frustrating. And my cortisol levels are super
low too. So I actually have to take a
daily cortisol medicine every day at 10 AM, otherwise I will
literally have to go to the ER. Oh, Oh my gosh.
OK. Yeah, yeah.
(15:10):
So I. Am in surgical menopause, so
hearing your experience being essentially perimenopausal like
you said because of adrenal insufficiency and that tumor,
it's such a relatable experience.
So thank you. Yeah, I mean, that's something
that I've known since I was veryyoung.
I've never been normal with my hormones, with PCOS.
(15:34):
They've always been all over theplace.
And then now, like even still, they're kind of all over the
place. I mean, it's, it's not, I
wouldn't say nice. I'm very, very lucky because I
don't want kids. My partner doesn't want kids.
And it just makes our lives a little bit easier.
Like knowing that I don't reallyhave to worry about that.
But if I did want kids or, you know, that would be so, so hard
(15:55):
and devastating. I just, I'm just very lucky
that, but not at all. I really hate my body sometimes,
but I'm very lucky that that I was chosen for this.
I feel like, you know what I mean?
Like I'm glad it happened to me and not someone else who wanted
kids. Yeah, I hear you.
I hear you. I think you are allowed to carry
both things and be like, I am lucky that this one aspect of my
(16:19):
life did not like directly affect this.
And on the other hand still be like but this still sucks balls.
Yeah, yeah, yeah. It really, I mean it.
Chronic illness, like, and I feel like people who don't, who
aren't chronically sick feel this way, but being chronically
sick. And I don't want to say being
(16:40):
close to death, but being in that weird middle ground of
like, I can't do things that I want to do as much as I used to,
to being like almost like a, a shut in at certain points.
You know what I mean? It makes you realize what is
actually important and like, move your life to surround that,
you know what I mean? Like, it's made me realize that
(17:02):
my the things that I love are inthis home.
Like the things that I love are my family.
The things that I love are my dogs.
You know what I mean? So like, I Orient my life around
things that I enjoy. And I'm not so sure I would have
done this if I wasn't sick. I think part of it is, you know,
to keep my positivity kind of up.
(17:23):
Like I keep busy with painting and keep busy with creative
projects. But yeah, I mean, it kind of
forced me to be like, I need to have fun every day or what's the
point of life? Right, I love that.
That's a really good outlook to have with everything going on.
Speaking of kind of having a positive outlook and using that
(17:44):
as a tool to manage like your symptoms and what you're
experiencing. Talk to me a little bit about
some other tools that you're using.
I know you said that you're on amedication that you take every
day at 10 AM so you don't die, but like what else are you doing
post surgery to kind of manage your symptoms?
Like what can you tell other spoonies?
(18:08):
Potsies, listen up. We both know that precinctopy
sucks. Fainting to passing out when
you're alone though, that is 2 thumbs down.
It's so nerve wracking. Like what if I pass out and hit
my head or I start getting dizzywhile I'm driving?
Am I going to be safe? Or just in general am I going to
(18:30):
be safe as a disabled woman? That anxiety, that is what gets
you. But I don't have that anymore.
Well, I do have anxiety. I am an OCD girlie, but not
about passing out or my safety because I just click my invisi
wear necklace and both my familyand emergency personnel are
(18:52):
alerted. The dizzies are scary no matter
how many times it happens. But knowing that I have a backup
plan is what makes me feel a little bit better, so maybe
that'll help you too. Using Code Sickest for 10% off
on your Invisibleware purchase at the link in your description
is an option. Sending you salty vibes.
(19:13):
Okie dokie. Anyway.
Wow. Yeah.
I mean, my life was thrown upside down because of the
tumor, honestly. And I wouldn't actually, I would
say more long COVID than tumor because it's the fatigue.
And I mean, it could be the tumor too, but just the fatigue
(19:33):
really made me slow down. I was working a demanding sales
job in person. I was hybrid at the end, but it
was just so hard to keep up with.
And I didn't realize how much I was giving of myself for that
sales job just to make money. Not just to make money.
We have to make money, but to make more money I was
sacrificing so much so I ended up switching to a full work from
(19:56):
home position. I'm on the back end of the
software that I was selling, so now I'm more customer facing and
a little bit slower. Day-to-day, but that in itself
made such a difference for my life and my ability to do other
things instead of going to work and feeling dead at the end of
the day and like literally just going to bed, barely talking to
(20:18):
my partner and going to bed likeit was it was hellish.
It was hellish. It was honestly terrible.
And then I got was super lucky, got the position on my current
team and it has just been a breath of fresh air.
It I feel so well supported by current job.
So I can't say how important just having a good job is,
(20:38):
especially when you're sick, like you when you're sick, I
feel like you have to your health has to be the number one.
It cannot be work. It cannot be friends, it cannot
be family like it has to be health.
And I would say especially when your symptoms are flaring right.
But now I'm able to put my health first and schedule my
(20:58):
appointments, my day around my count, my own actual calendar.
And along with that as well too,surrounding myself with people
who are supportive, who do show solidarity, who are here.
How can I help you not? Hey, hurry up, You're, you're
being too slow. You know what I mean?
Because I, I'm the slow old grandma now.
(21:19):
I cannot walk fast. I can't run.
I can't dance like I used to. Like I am literally as slow as a
turtle like. A very.
Cute, but I get to see more things, I get to enjoy more
things at the same time too. And then I also use a visible
armband as well to do pacing forpacing and keeping track of my
pots and that type of thing. Yes, that's very smart.
(21:43):
I've heard a lot of good things about the the armband.
I'm just using the free version right now, but even that has
been so helpful to kind of see what's going on but.
Definitely OK. I like that.
So prioritizing REST, finding a good job if working is something
that you want to do. And like you said, really.
(22:03):
Yeah, for me, for me not workingwas not an option.
I looked into, you know, going on disability and we didn't have
the ability to really go for it last year.
But I just got really lucky withmy job and my job is is really
low key and I just wish every chronically I'll person could
have a job like I have, you know, like every disabled person
(22:26):
needs the ability to have an easy job, an accessible job is
what I mean. My job is not easy.
It's very accessible, I should say.
Yes, no, no, no. That's a great distinction
because you're absolutely right.I feel like yes, a lot of people
who are disabled can't work. Like there isn't a lot of jobs
that they can work. And so that in itself is not
(22:49):
easy, but it's so nice to like have a reason to get up in the
morning and be like, I have tasks to do.
I have something that makes my life a little more fun and
something that I get up like a reason to get up in the morning
that isn't just like I have to feed myself and say hi to my
partner. So yes, I love what you said
(23:09):
about finding a good job becausethey're hard to find but
accessible. Jobs.
They're good. Yeah.
Yeah, yeah, I get that. I'm I'm very lucky.
Like I work at a job that my desk is all bright pink and
orange and like I listen to music all day while I do my job
and. That's glorious.
(23:30):
That's the dream. Well, yeah.
And it seems like you're also kind of living the dream, like
you're working from home. You said you you love what you
do. And like, that is such a great
point. So thank you for touching on
that. Yeah.
I and, and at this point in my life, like my husband is, is
possibly going into law school. So we're about to head into a
really, really crazy and busy season and I'm just trying to
(23:53):
soak it all up and really lay use his time as like a good
foundational time to set us up for the next 4 years of him
being in school part time. It's going to be, it's going to
be hard because he is, he makes all the dinners he, he does
laundry like he's everyone needsmy husband as well.
(24:14):
And yeah, I we just, we're aboutto have a big change and we're
excited, but it's scary. Oh my gosh, I'm excited and also
a little scared for you. That's.
Yeah. What a life change.
So besides kind of the like abstract tools in the sense of
like prioritizing REST, finding a good job, making sure you have
(24:35):
a support system, do you have any physical tools?
Like I know you said you're on like a medication.
Are you like a fan of a certain heating?
Pad let me pull up my list yeah I, I unfortunately, have to take
a lot of medication I'm on, you know, some immunosuppressants,
I'm on pain medicine at night yeah a good, good deal of
(24:57):
supplements and yeah, it's very very important they're in there
they're keeping me moving I'm. OK, wait, OK, you said that you
use supplements. I promise.
I have a disclaimer that says that we're not medically
responsible. People do shit.
But what supplements are you using?
Like, can you share for anyone who's dealing with adrenal
insufficiency themselves? Like any you know, like top
(25:19):
three. Yeah, as I'm literally pulling
out my list. You're good.
I was like, you know what? Wait, I was like, I have that
question and I know that someonewill really benefit from that
they. Have me on NAC two times a day
and then really just probiotics.Are probiotics good for hormonal
(25:45):
imbalances? No, I don't think there are any
vitamins for for like adrenal insufficiency or hormonal
regulation. I think those are more, those
are more of the actual prescriptions I'm on.
I have a lot of hormones that I'm that I have to be on
unfortunately. I hear you.
(26:06):
I, I was on progesterone for a little bit after surgery, but I
was taking Chasbury or Vitex, which I know has been really
good for regulating PMS or hormones.
So maybe that'd be interesting for someone with adrenaline
deficiency. But also I'm not a doctor, so I
(26:27):
don't know. Yeah, but thank you for sharing
that. I appreciate.
It on a a very, I feel like goodregimen right now and I'm
nervous to change it in any aspect.
So I feel like I'm being proppedup just right, you know what I
mean? But I also use a cane or a
rollator and I actually am starting the process of of
(26:51):
considering a motorized wheelchair.
So I'm super scared, but super excited because it would just
open up so much, so much abilities for so many things for
me to do. And it's just my legs are so
tired all the time and I'm sitting on this little stool
that I just wheel around the house everywhere or into the
(27:12):
bathroom to do my makeup or whatever.
But I need to get something kindof to, to help me move around a
little bit better on my bad daysbecause bad days are hard.
But but yeah, mostly the cane, mostly the rollator shoe
inserts. I have really bad foot pain due
to neuropathy and I've gotten some new shoe inserts from my
podiatrist and they are working very well.
(27:35):
Oh my gosh, OK I kind of love what you said about like a
rolling stool because sure, not everyone can afford to get a
rollator or a wheelchair. God forbid those things are
expensive as cuss, even with their insurance.
So yeah, get I'm kind of imagining, you know, those
little stools that the doctors sit on in their office,
literally. OK, it's that, but.
(27:56):
Smaller, it's a little, it's a little bit top heavy, so I'm
worried that I'll fall over one day, but I think it's just part
of the fun. Hey, you know what?
You could fall over from a higher height if you were
standing. So at least when you're sitting
and rolling around, no. Literally.
Literally. Well, thank you.
Those, I feel like are some goodoptions for maybe the listeners.
(28:18):
Wow, for the listeners listening, for the people
listening, that's a really good array of options.
So thank you for sharing. Maybe if they want to chat with
you some more, kind of see, see who you are, what you're doing,
where can they find you? Are you on social media?
Yeah, I would say the best placeto find me is on Instagram and
(28:39):
it's Amanda, Liz on Instagram and I think on Fred's too.
Well, thank you again. I I really do appreciate you
being on the podcast listeners, That is all we have for you
today. Otherwise, I'm Clark, this is
Amanda, and this has been chronically the sickest podcast
(28:59):
you know. That's all folks.
Thank you so much for listening.If you like this episode, click
that follow up button on your podcast app of choice to get
notified every other week. You can find the podcast on
Instagram and TikTok at Chronically the Sickest Podcast.
Let me know if you have any questions or just want to chat.
(29:22):
I love hearing from y'all. Until next time, I'm Clark, and
this has been Chronically the Sickest podcast you know.
Disclaimer, this is a conversational podcast and while
we may share a diagnosis journey, symptoms, and treatment
plan, this is not medical advice.
(29:42):
If you have any questions regarding your health, please
reach out to your doctor and have a great day.
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