October 9, 2024 • 31 mins
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Living with chronic illnesses like endometriosis and adenomyosis can feel like a constant battle against societal expectations, and Chelsea and Alanna, know this struggle all too well. We've discovered that managing our lives with these conditions often resembles trying to fit the contents of a 10-inch dinner plate onto a 6-inch one—an impossible task that only invites stress and anxiety. Join us as we share our personal journeys of setting boundaries and being realistic about what we can handle. From prioritizing staples like faith, family, and community to learning how to communicate our limitations effectively, we explore the delicate balance of maintaining our health and well-being amidst the pressure to always be productive.
Navigating the healthcare system can be daunting, especially when living with complex conditions like endometriosis. Chelsea and Alanna open up about their experiences with medical professionals who dismissed our concerns, and how finding the right doctor who truly listens can be life-changing. We discuss the importance of advocating for oneself and the systemic issues plaguing women's health care. With the power of community support, we aim to empower others, encouraging self-love and growth through shared stories of grief, anger, and perseverance. Discover how embracing these challenges can be a catalyst for personal growth and change, and how serving others can offer profound healing on our journey together.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Welcome to EndoBattery, where I share about
my endometriosis andadenomyosis story and continue
learning along the way.
This podcast is not asubstitute for professional
medical advice or diagnosis, buta place to equip you with
information and a sense ofcommunity, ensuring you never
have to face this journey alone.
Join me as I navigate the upsand downs and share stories of
(00:23):
strength, resilience and hope.
While navigating the world ofendometriosis and adenomyosis,
from personal experience toexpert insights, I'm your host,
Alana, and this is EndoBatterycharging our lives when
endometriosis drains us.
Speaker 2 (00:41):
Welcome back to the table for part two of me taking
over endobattery.
My name is Chelsea and I'msitting down with Alana today to
continue learning more abouther endometriosis journey.
This is where we left off.
Speaker 1 (00:53):
We often say I have so much on my plate, I can't do
all this.
The correlation I make withthis is that a person that
doesn't have a chronic illnessmaybe has like a 10-inch dinner
plate.
Right, you go to a buffet, youget your 10-inch dinner plate,
you fill it with all the thingsand you still you're able to
enjoy it, you're able to fillyourself up with it.
A chronically ill person reallyonly has a 6-inch dinner plate
(01:17):
and if you try to shoveeverything from a 10-inch dinner
plate onto a 6-inch dinnerplate, it's going to overflow,
yeah, and it's going to overflow, yeah, and it's going to get
contaminated and the food'sgoing to touch.
It's going to touch.
And you're not going to be ableto, like, savor what's on your
plate.
You're not going to be able toenjoy it in its purest form,
(01:38):
right, and it's not going to benutritious in that standpoint,
because it's going to createmore anxiety.
It's going to, you know, allthose things for us ADHD or
autism spectrum people, the morewe try to pack on, the less
fulfilling it is.
Yeah, and so the thing thatI've learned is that my
chronically ill plate needs tobe managed, and so I have to
(01:59):
choose what I want to put on myplate.
Yeah, and is this?
Is it?
Am I just sampling it just totry it, or is this something
that I feel like is actuallygoing to be nutritious to me?
Is it going to fuel me?
Is it going to give me life,right.
And then the other part of that,too, is like we talk about the
spoons theory, which is reallyhow this kind of this podcast
kind of started with its name.
If you're sampling all thesedifferent things on your plate
(02:21):
using a new spoon, you're goingto run out of spoons if it's too
full and you're going tocontaminate it.
Yep, right, and so I just feellike knowing how big your plate
is and what you can put on itbefore it runs over and becomes
overwhelming is key.
Yeah, and I think that we tryto live in a space where we get
(02:44):
the 10-inch plate but we onlyhave capacity for a 6-inch.
Speaker 2 (02:48):
Yeah, yeah, I think we get really used to pretending
like we have it all togetherwith the 10-inch plate, when in
reality, like, the gravy'sspilling over the edge and the
mashed potatoes are falling offand the bread roll, you know, is
off the plate and rollingacross the floor, and but we
pretend like we have it togetherand we just don't.
And setting boundaries andsetting expectations for
ourselves that are reasonable isso important.
Speaker 1 (03:10):
Well and I think that's like for me in doing this
podcast, I love getting theinformation out I've had to step
back and say I don't have thecapacity to do a whole YouTube
channel with video right now,like, and I will maybe get there
one day, but I don't have thatright now, I don't have the
capacity for that.
And I think that for those ofus who have trauma from missing
(03:33):
out on things, that when we feelequipped to do something, we
overfill and it kind of sets usback and I think, just
understanding that you can'tjust continue piling things on
because you think you can,because you will burn out and
your body doesn't recover thesame as someone who doesn't have
any chronic illnesses, and sothat's something that I've
(03:55):
learned and I've had to continuelearning.
And there's those staples onour plate, right?
So for me, my staples on myplate are the faith, family,
friends and how to help servethose in the community yeah, and
the podcast is definitely a bigpart of that.
But if I continue to add thingsonto my plate that don't fuel me
and don't feed me, those otherthings don't get the attention
(04:18):
they need, right.
I just know that I have to takeless on and I have to be okay
with that, and I think that'ssomething that is really hard
for us, because society has toldus that we need to be
go-getters, we need to be ableto do the B's and C's of life,
when we're barely surviving an X, y and Z, yeah, you know, yep,
and so I feel like that's kindof something that I've learned,
(04:39):
because I put that expectationon myself to be able to
accomplish all this stuff, butmy body cannot handle that.
Speaker 2 (04:44):
Right, yeah, no, I'm almost 40 years old and I'm just
now figuring out how toestablish boundaries, how to
communicate clearly with peopleand be like hi, I need you to
understand that I don't feelwell and if that's too much for
you, then sorry, but that's notmy problem.
Like I'm not going to make itand I'm sorry if I'm canceling
on you or I'm sorry if I'm notwilling to set plans with you
right now.
Right, because I just don'thave.
(05:06):
You know, I am hour to hour onhow I feel sometimes and it's
like I could feel great in themorning and then, by the time
dinner rolls around and I'msupposed to go meet people, I
feel awful and I like can't evenget out of bed, and so I think,
setting those boundaries andlearning this, you know, and a
lot of it has just been overthese last few years where it's
like you know, it's okay, goingfrom being this go-getter and
doing all of the things to doingthe things that serve you only.
Speaker 1 (05:29):
And I think that's.
Speaker 2 (05:30):
I think it's healthy.
I think it'd be good even fornon-chronic illness patients to
do that and just take a stepback and really prioritize.
You know, and this disease kindof makes you prioritize what's
important to you.
Speaker 1 (05:52):
It does.
And I didn't realize that, Ididn't realize how whole body
consuming it is.
And even still, there are daysthat I think I can manage more
than I can.
And what I realized is that mybody takes more recovery time.
Yes, before I would think, ohwell, this is.
You know me being lazy, becausethis is what I heard.
Right, you're always tired,you're always, you just don't
want to do it.
You just, you know, like allthose things that people kind of
throw shade at you for.
(06:12):
And there's proof to back thisup.
There's scientific evidencethat points to the fact that
endometriosis brains have aharder time with fatigue, have a
harder time.
Their brain, the mapping oftheir brain, changes compared to
those who don't have it.
Yeah, it's scientific, right.
So, yes, I'm not functioningthe same as you, but that's okay
.
Yeah, and it's not to makeexcuses, I don't, because it's
(06:36):
not an excuse, no, it's areality, right.
And I think that if we canshift our mindsets from an
excuse to reality and do whatyou can when you can, then we
might be able to feel morefulfilled.
Yes, and not sitting in a spaceof but I wish I could, yeah,
yeah.
Speaker 2 (06:56):
I would agree, cause I think that we spend a lot of
time sitting there thinkingabout the what ifs and what
could have beens in our liveswhen we look at what this
disease has taken from us.
You know, I mean it's still mostof my late twenties and most of
my thirties at this point, andit's it's hard to you know not
mourn that and dwell on thattype of thing where it's like,
(07:16):
oh, I could have been doing this, I could you know.
Instead of that, we got tofocus on the what is happening
now, where we're at right now,and what?
we can control right now andguess what?
I can control how full my plateis.
Yeah, I have the control overthat.
You have the control over thatExactly.
It's just so hard to not gowith societal norms and do all
of the things and be the boss,babe, and be all of those things
(07:39):
that society wants us to be.
No, we're tired and we're sickand we need naps.
Speaker 1 (07:43):
Yes, Lots and lots of naps and we need to be okay
taking those naps and if thehouse doesn't get cleaned one
day, it doesn't get cleaned.
Speaker 2 (07:53):
It doesn't, and I think you and I are lucky that
we have really supportivepartners.
Like my husband is sosupportive, like and you know
I'll be like I'm having a roughday and he's like go take a nap,
go lay down, go put your feetup for a little bit, go do
whatever you need to do to feela little better, like I've got
this and I know your husband isthe same way, which is such a
(08:14):
blessing because there's a lotof I've been in other
relationships where it's notthat way.
Not that way at all, not thatway.
Speaker 1 (08:19):
But I do think like it's interesting to sit back and
observe our support systems andhow they've shifted and changed
, because now that my girls areold enough to kind of understand
some of what I'm up against,they have more questions and the
thing that this podcast hasgiven me is the ability to
answer some of those questions.
I can't answer all of them andI've been really honest with my
(08:40):
girls and saying sometimes I getmad at my body, Sometimes I'm
mad with the hand that I've beendealt, but I'm really grateful
on the other end and I lovehearing when my girls tell me,
mom, are you helping someone?
And I always say I hope I am, Ihope I'm helping people.
Speaker 2 (08:57):
You are.
Speaker 1 (08:58):
And they're like, okay, good, I want to do that
too and know and I think thatI'm able to now show my kids
through example what it can looklike to serve others and find
joy in that without overdoing it.
Yeah, but they're also seeingme grieve and I think that's
really something that I didn'tunderstand.
I always associated grief withdeath and now I associate grief
(09:21):
with anything that we have asense of loss for.
Speaker 2 (09:25):
And we have a lot of loss with this disease.
Speaker 1 (09:28):
Absolutely.
But there's also things that itbrings you.
It can bring you community, ifyou let it.
It can bring you work wives, ifyou let it.
Speaker 2 (09:36):
Great relationships with people.
Yeah, I've met people all overthe world since I've been
diagnosed with this and they aresome of my favorite people I've
ever met, like wonderful, greatfriends, people that we can
reach out to at any time of theday.
They'll answer our questions,they'll support us through stuff
.
It's really amazing.
Yeah, the community that we'vebuilt and worked our way into,
(09:56):
yeah, we've kind of shoved ourway.
We did shove our way in.
Speaker 1 (10:00):
It might've been prompted by a shot of tequila,
but we are there.
It might have been prompted bya shot of tequila, but we are
there.
Yeah, we are there.
That's not true, but I thinktoo there's that sense of
belonging when you aresurrounded by people who
understand you and who have beenthere, and although you have
other friends who are fantastic,it's not quite the same.
Speaker 2 (10:22):
No, no, my unchronically ill friends do not
understand what I'm goingthrough at all, and it's not
quite the same.
No, no, my unchronically illfriends do not understand what
I'm going through at all, andit's not their fault, I mean,
I'm glad they don't, because Idon't want them to feel the same
way that I've felt over theselast few years and but a lot of
them just don't understand.
You know, and and that's fine,they don't have to.
But I also have to set firmboundaries.
Speaker 1 (10:41):
But I also think that we it's important for us to
give space to that too yeah, andunderstanding and grace,
because they don't understand itand until you live in this
space, it's really hard tounderstand because it is so
invisible.
Most of the time it's not likethey can see a cast on our arm
or they can see us hooked up totubes, although some people are
and have all the bags.
Speaker 2 (11:02):
Right, you know.
Speaker 1 (11:03):
Yeah, there are those people and I just wish that we
could convey to otherseffectively the extent of which
this disease ravishes our bodies.
And that's something I didn'trealize in starting this podcast
, or even part of my story ishow much it affected my whole
bodily system.
And now I look at it and I seeso many patients who are like my
(11:26):
back is hurting, my hip ishurting, I can't pee, or I pee
too much, or you know, I'mconstantly pooping or I'm not,
I'm never pooping, or, and it'slike there's an underlying
reason for that, and I thinkthat we have become so
complacent in society to justtake doctors at their word as,
oh, you just have IBS or youjust are depressed.
(11:46):
We're so used and I'm guilty ofthis.
This is why I was with the samedoctor for so long was because
I felt this sense of loyalty andtrust.
But even with that, it is okayto explore more about who you
are and what you're living with.
It's not going behind theirback, it's understanding your
(12:07):
disease.
Speaker 2 (12:08):
Yeah, and it's your right.
Absolutely their feelings arenot your responsibility, and if
your doctor gets their feelingshurt because they're not
qualified to handle the issues.
It's not your fault, not yourresponsibility.
No, let them cry themselves tosleep at night when they see you
took yourself off the schedule.
Speaker 1 (12:24):
so right, the other part of that too, is we pay
their bills right, especially inthe us, oh yeah, but everywhere
, I mean oh, I've a few like skitrips and stuff for doctors
over the last few years right.
So if they're not serving you,it's time to look somewhere else
.
Yeah, and you have to kind ofbreak up.
And it doesn't mean they're anyless of a person, right, it
(12:46):
just means that they aren'tmeeting that need where it needs
to be met.
Speaker 2 (12:49):
Yeah, no, I mean, you know my story with my most.
I had a GP a few years ago thatI was seeing, really liked her
for a while and then my symptomsstarted coming back and I just
wasn't feeling great and Imentioned, you know, hey, I
really think it could be my endo, I'm not sure and she spent a
good solid five minutes arguingwith me about how it couldn't be
endo, cause I don't have auterus, and I was like that is
(13:10):
not how this works, not even alittle bit, even a little.
And she was unwilling to listento anything that I had to say,
any research I had to provide,and so I ended up ending that
doctor patient relationship,moved on to somebody else.
Absolutely wonderful experience, no issues.
Do not have to explain things.
It's amazing, you know, andfiring that doctor was one of
the.
I didn't go to the doctor foralmost two years, Right, Because
I was just like.
(13:30):
I am so discouraged I'm nevergoing to find a doctor that
believes me.
I'm never going to find adoctor that understands this
minus the excision surgeons butthey're not great long-term
doctors.
That's not their specialty,that's not what they do.
So I think it's good that youhave found a way to advocate for
yourself, that you've taughtother people.
I mean, you taught me how to dothat.
So I know you're worried aboutmaking a difference, but you are
(13:52):
the one that taught me.
Hey, like there's an entireendobattery episode, you can
fire your doctor.
I'm pretty sure you have thatin you already.
Battery episode you can fireyour doctor.
I'm pretty sure you have thatin you already?
Speaker 1 (14:02):
I probably did.
I'm a little feisty, you arereal feisty.
I thought I was feisty until Imet you and I was like that's my
soul sister.
No, I could.
I could get scrappy.
You could real fast.
I think that's the thing is.
We have to count on each otherto feel empowered, because we
get stuck in our brains and onour heads and in our fatigue and
in our pain and everything else.
You need someone to say that'snot okay, To validate the way
(14:25):
that you are feeling yeah, orsomeone to say have you
considered maybe doing this?
Speaker 2 (14:30):
Yeah.
Speaker 1 (14:30):
Yeah, I think.
Speaker 2 (14:31):
I called you after that appointment.
It was like this is awful.
And she's like move on, like gofind somebody else, find
somebody that you don't have toconvince that you don't feel
well, Right?
Speaker 1 (14:44):
You know, it's like that is such great advice that
you gave me.
I mean, gosh, if we helddoctors to a higher standard, I
question whether we would be inthis situation that we are now.
Speaker 2 (14:52):
Yeah, I would agree.
I mean, if there was bettermedical school education on this
, if we actually actually ifthey actually researched women,
if they actually involved us inlike clinical trials right
things right that affect women.
That would be nice so and youknow there's a lot of failures.
It's hard to talk about thatbecause you know there are so
(15:13):
many great doctors out therethat are fighting against the
system and it really is thesystem here in the us at least.
That just sets us up forfailure.
Speaker 1 (15:20):
I think everywhere.
I think this is a worldwideissue that we face Yep.
And I would say the one thingthat I've learned, and I
continue to learn to do, is howto stop invalidating myself.
Yes, yeah, because and it wasonly recently that this hit me
(15:40):
how much I was actually doingthat I went in to go see a
provider and I was telling herall these and and and.
Going into this provider, I waslike I don't even know what to
say to her, like I don't evenknow how she can help me.
And so I went in and I kind ofgave her the brief rundown, or
whatever, of everything I wasexperiencing and she goes.
She stopped me and she said Ifeel like you're trying to tell
(16:02):
me something, but you're alsoreally holding back from telling
me something.
She's like there's something onyour mind and something that you
need to tell me, but you'reputting up that wall and I lost
my ever loving mind because Ijust started sobbing and I have
never done that in a doctor'soffice After, yes, in my car,
(16:23):
absolutely.
I've never cried in aprovider's office and I kept
apologizing to her.
I'm like I'm so sorry, I don'tknow why I'm crying, and she
goes.
No, this is a safe space foryou to tell me everything.
She goes.
I can't help you if I don'tknow everything.
Speaker 2 (16:41):
Well, and what a sign that is for how mistreated
endopatients are, where it'slike.
All she said was just tell mewhat's going on and that is
enough for you to feel heard,because so many other doctors
just do not care.
They don't care.
Speaker 1 (16:54):
Right, and and I had to convince myself that I
mattered enough and that my bodymattered enough to talk about
everything going on and that Iwasn't going to be dismissed or
invalidated by her, right, yeah,there's so much fear in walking
into doctor's offices and notevery doctor's office, I do it
to some of the best doctorsbecause there's that fear that
(17:16):
they're not going to be able tohelp me, that there is no help
for me, or that it's not thatbad.
Right, those are like the chiefthings for me.
Yes, like I'm not worth havinga better quality of life than
what I already have becauseothers have it worse.
You know, the list goes on, andI just feel like we get stuck
in this trap of comparison toother patients, which we have to
get out of, because your storymatters, your symptoms matter,
(17:40):
your body matters, your feelingsmatter, your mental health
matters, and they shouldn't beinvalidated by a provider.
No, or yourself.
Right, you're feeling whatyou're feeling.
There's a reason for it.
Do we need to sometimes gethelp on a psychosomatic spectrum
?
Yes, because we have so muchtrauma, right, we have to learn
how to walk through it so weknow what is really affecting us
(18:00):
as opposed to what isn'taffecting us, right?
Speaker 2 (18:03):
Yeah, and when you think of the statistics where
you know it takes between, whatis it?
Seven to 10 years to getdiagnosed and an average of
eight doctors, is that right?
Which is crazy to me becausemine was like 30.
I know, but I feel like thoseare really low numbers.
Right, I do too, but even, buteven there, you know, if you
have eight doctors in a row,tell you that you're fine.
Eight doctors, eight people whowent to med school, I mean,
(18:25):
that's a combined.
What is that?
13 years in med school times,eight, I can't do them out that
fast.
Yeah, I'm not doing that fast,104 years of schooling and they
all told me you know and I don'tknow anything.
You don't know anything we'renot medical professionals.
We're just like two girls thatare nerds about endometriosis.
Speaker 1 (18:42):
That I didn't know.
I was a nerd aboutendometriosis until I started
this.
I had no idea how big of a nerdI was, until we started this,
and I'm like, wow, I'm prettynerdy when you can talk for
hours about endo and ourfamilies are like are you done
yet?
Nope, we're not, we'll neverstop talking so.
Speaker 2 (19:01):
But when you hear it you know, over eight to 10 years
, eight ish doctors on average,if that's if I'm remembering
correctly.
That's so damaging yeah, it isso damaging to your self-esteem,
it's damaging, you don't.
You can't trust yourself, youcan't trust how you feel in your
own body, you so you know thereis a lot of mental health
aspect that goes into thisdisease where it's you know, and
(19:22):
it kind of falls into that hey,I treated, I had the
hysterectomy, I had the excision, but I need pelvic floor
physical therapy.
I need regular physical therapy.
I need to learn how to poopagain like a normal person.
I didn't know how to breatheproperly.
I'm still working on thebreathing.
Oh, I'm still terrible about it.
Speaker 1 (19:44):
Yeah, I don't.
Speaker 2 (19:45):
My diaphragm does not work the way that normal
people's diaphragms work andit's just like I cannot breathe
normally.
But you also have to addressthat mental health aspect and
look at you know what, if youhave depression, if you have
anxiety over it?
And and try to find somebodyqualified to help you work
through that, because it isawful and it is so bad for your
self-esteem.
Speaker 1 (19:58):
So bad.
But I also think when you walkinto a new provider's office,
you're always afraid of whatthey're going to say.
What's the new diagnosis?
What's the new challenge?
What's the this, what's thethat?
It's twofold right, because,like, either you want nothing or
you want it all.
Yeah.
Like there's not a whole lot ofin between to that, because
you're like I want a diagnosis,I want to know why I'm feeling
this way, but I also don'treally want to know, because
(20:20):
then I have to deal with it andthat's like more time, more
money, more lifestyle changes,more of all these things that
feel compounding, which, again,is why talking to someone is
important, because we can'tcarry this load alone, and
that's why we started thesupport group, and that's why
it's important to seek outmental health counseling, so
(20:42):
that you don't have to carry theload alone.
Other people can support youalong the way and you don't
carry it all by yourself, andthey were amazing.
Speaker 2 (20:56):
Hey, I saw this doctor and it was the worst
experience I've ever had.
Oh hey, have you tried this?
Have you tried this type oftherapy?
Have you looked at acupuncture?
I found a great acupuncturistyou know, I mean we share so
many resources, you know, withthe expectation where it's like
do what you want with these,right, you know, if you want to
(21:18):
make an't, have this group.
You know, I mean, I would neverbe on the medications I'm on
now if it wasn't for you guys,cause I, the whole reason that
I'm doing a lot of the thingsI'm doing in order to fix myself
is because I've seen you guysdo it and it's helped you and
it's, you know, been hugelybeneficial for you and other
people in our group.
Yeah, without that support, wedon't have that yeah, and I
(21:38):
think, too.
Speaker 1 (21:39):
I think there's something to be said.
Something you won't get out ofa doctor's office is lived
experience.
Yeah, and sometimes we need, aspatients, to hear other
patients talk about theirexperience, because I think that
allows you the ability to takethe next best steps for you.
Yes, and and there's been a lotof things that I didn't really
(22:02):
correlate with my journey untilI talked to other people that
experienced the same thing andthen had a diagnosis or then had
a way that they were helpingsolve some of the issues that
they were facing.
That lived experience is whatcan carry you to the next stage
of healing, and I do feel like Ihave healed a lot in just being
(22:25):
in community with others.
Yeah, you know, which is whyyou know in this podcast, like I
always talk about, we need tobe part of this community,
joining us at the table, becausethe table is where you share
the most intimate meals, whichgoes back to my plate theory and
my spoon theory and all thetheories you see where my mind
goes.
Speaker 2 (22:43):
We're very food oriented here.
Speaker 1 (22:45):
Even though we can't eat it half the time.
Speaker 2 (22:46):
We don't eat most of the things, but we like talking
about it.
We'll talk about it.
We make good analogies.
Yeah.
Speaker 1 (22:52):
But I mean, if you're like, oh, let's go meet for
coffee and you have coffee at atable, you get to know more
about these people.
You get to know the moreintimate aspects of who people
are when you sit down at a tableand have coffee with them.
Yeah absolutely that's.
What we need as a community isto be able to feel safe enough
to sit at the table with othersand learn and grow and heal.
(23:13):
I think, honestly, I didn't seethat as a big element starting
this, but now.
Now that is like my wholetakeaway.
Speaker 2 (23:23):
Yeah, so would you say like your goals have changed
since you started endobattery?
I feel like they have, but how?
How do you feel like your goalshave changed over the last
three years?
Speaker 1 (23:35):
Uh well, I think part of it is.
I thought it was just forinformation and now I'm
realizing it's about community.
Yeah, and now I'm alsorealizing that I am right there
with my community and my goalsin doing this is to continue not
only advocating but meetingpeople where they're at, in the
(23:57):
space that they're at, andthat's why, you know, when I
have people on or whatever, Iwant to be able to try to help
build that bridge.
Because I don't know about you,but for me it was really hard
to advocate for myself in themidst of all my pain.
And there have been times, evenstill in the discovery phase, of
something else happening thatit's hard for me to advocate, or
(24:20):
it's hard for me to hear things, or it's hard for me to
advocate, or it's hard for me tohear things, or it's hard for
me to figure out my next steps.
But if this is a tangible wayto do that, I want to help do
that and facilitate that way ofhealing or information gathering
or whatever the case may be.
So my overall goal is not onlyto provide advice, good,
(24:40):
evidence-based material, butalso to meet people where
they're at, and part of that is,you know, emailing me info at
endobatterycom.
If you have questions, if youwant to hear about a specific
topic, or if you just telling mea little bit about your story,
you can email me and be like heyAlana, I just wanted to tell
(25:02):
you this, and it fuels me somuch when I hear things like
that.
But I really try to impress onpeople that this is not so much
my podcast as it is theirs.
I'm learning a ton.
I'm learning a lot about myself, about the endometriosis
community, about endometriosisas a disease, but also life past
excision.
When you're looking past theendometriosis and I think that's
(25:26):
something that we don't oftentalk about enough is life after
excision and the challenges thatyou can have, but also the good
things that you can have.
And so my goal with doing thepodcast and in my own journey is
just growth growth in community, growth in knowledge, growth
and understanding.
(25:47):
Growth in community, growth inknowledge, growth and
understanding and growing inloving myself more through this
journey and showing myself grace, because that's a really hard
thing for me to do, and I thinkwhen you have people surrounding
you like you and I talk all thetime but we've both come to one
another and said I'm so madright now and to feel validated
in that is huge, yeah, and weall need that space.
(26:08):
So I don't know, I think justshowing each other grace but
allowing space for grief andanger and frustration, but using
that to fuel change, isimportant.
It's beautiful.
I think that's beautiful.
Speaker 2 (26:21):
Well, I know I can speak for a good chunk of the
endometriosis community when Isay that you really are
contributing in a huge way tothe conversation.
You're contributing to theinformation that's available.
I've learned a ton from yourpodcast and I talk to you every
day.
Speaker 3 (26:39):
So, and I've learned so much, you know I mean you
have incredible guests.
Speaker 2 (26:43):
You do a really good job of balancing everything, of
talking about the emotional side, the physical side, all of it,
and I just I know you're makinga huge difference and it makes
me so proud to be your friend.
Speaker 1 (26:53):
So why you're sitting next to me is to boost me.
Speaker 2 (26:56):
Yeah, you know I'm here to make you feel good, so
but I mean it, I really do, Likeyou've changed my life in such
a positive way and I'm 100%certain that I'm not the only
person that feels that way, so Iknow you have a lot of
listeners that are grateful forthe content you provide and the
support you provide, even ifit's just while we're just
sitting at your kitchen tablewith microphones hanging out
(27:17):
talking, drinking our Ziggy'shashtag.
Speaker 1 (27:19):
Sponsor us hashtag, please.
We're not sponsored yet.
I am happy to do it and I youknow I've said this before to so
many people.
I didn't know I needed thispodcast as much as I do in some
ways, because it's been part ofmy healing journey yeah it's
been part of figuring out mypurpose yeah and I also want to
say that your purpose doesn'talways have to be easy, no, and
(27:42):
pain-free it doesn't.
And there are many days that Iquestion certain things and I
beat myself up in my own headabout certain things and I
question my ability.
Why am I doing this?
Am I?
You know all these things right?
Yeah, and I think that's onlynatural it is.
But I do think that if we allowdoubt to fill our heads without
(28:06):
motivation, then it's just thatit's just doubt.
But if we allow doubt to propelus into something more, to get
us thinking outside the box, toget us thinking outside the
situation, then that'sempowerment it is.
And that's empowerment it is.
And I just want to encouragepeople like if you have doubt,
(28:33):
even if it's in your own health,let it empower you to grow and
change and to step outside theknown box and into the unknown
box, because I bet you anything,the colors are brighter they
are.
You will be unstoppable fromthat point.
So that's kind of my mindset,and doing a lot of it too is
like I have doubt all the time.
But what's that doubt going todo?
It's going to propel me, it'sgoing to empower me.
Speaker 2 (28:52):
So no, and I think there's a huge, huge benefit to
service as healing.
Yeah, and there really is.
I'm sure there's science behindit somewhere.
Speaker 1 (29:02):
Mel Robbins probably has something like that, Mel, if
you want to come on please.
Speaker 2 (29:05):
Oh my gosh, that would be my dream.
Speaker 1 (29:07):
If she wants to come on and talk about that, that
would be.
Wouldn't that be impactful?
Oh everyone get on Put in themessages to Mel Robbins.
Speaker 2 (29:14):
Yes, because we love her.
And she really is brilliantabout this stuff and it helps so
much to a step outside of yourjourney and be beneficial to
other people on their journey.
Speaker 1 (29:27):
And that in turn heals some of those broken
pieces inside of us.
Yeah, absolutely, I 100% agreewith that.
I would say 1000, but that'snot an actual number.
Speaker 2 (29:33):
It's okay, we like exaggerating, it's fine.
Speaker 1 (29:36):
It's true Drama queens, according to all the
doctors.
Speaker 2 (29:38):
We're just exaggerating.
Speaker 1 (29:40):
Exaggerating Loud drama.
Queens, we're making things up.
Speaker 2 (29:42):
Yeah Well, I really appreciate everything that we
talked about today.
It is so fun being on your show.
I love when you have me on hereand I appreciate you being such
a good friend, such a greatpodcast host and such a fierce
advocate for patients withendometriosis in our communities
and around the world.
There are people listening allaround the world and it's really
(30:04):
quite amazing for me to seewhat you have turned this into,
and it makes me so proud to beyour friend.
So thank you so much forletting me jump in here today
and chat with you.
Speaker 1 (30:14):
I'd have you all the time if I could.
Speaker 2 (30:16):
You know I'm too tired for that.
I can't put that on my six inchplate but I'm happy to show up
like once a month.
So need me so I have enoughenergy for one podcast a month,
maybe, or with the right guests,maybe I'd show up.
Speaker 1 (30:28):
But everyone needs to tell Chelsea how much they love
her.
Speaker 2 (30:32):
Oh I, it would be good for my self-esteem.
I am.
I still have self-esteem issues, so I'm working through them.
I've got a great therapist butdon't say anything.
Speaker 1 (30:41):
Mean about me, yeah I can't take it, I'm too fragile.
Speaker 2 (30:47):
Oh no, thanks for sitting, making me sit down and
talk about myself yeah, no, Ifeel like it was time for people
to kind of get a recap from youand just learn about what
you've learned on your journey,because you've changed so much
over these last few years that Ihave, thank goodness goodness,
I'm not a stagnant pond.
Speaker 1 (31:04):
You were really annoying before.
Speaker 2 (31:06):
Thank you for listening today.
Until next time, please keepadvocating for yourself and for
others.
Welcome to EndoBattery, where I share about
my endometriosis andadenomyosis story and continue
learning along the way.
This podcast is not asubstitute for professional
medical advice or diagnosis, buta place to equip you with
information and a sense ofcommunity, ensuring you never
have to face this journey alone.
Join me as I navigate the upsand downs and share stories of
(00:23):
strength, resilience and hope.
While navigating the world ofendometriosis and adenomyosis,
from personal experience toexpert insights, I'm your host,
Alana, and this is EndoBatterycharging our lives when
endometriosis drains us.
Speaker 2 (00:41):
Welcome back to the table for part two of me taking
over endobattery.
My name is Chelsea and I'msitting down with Alana today to
continue learning more abouther endometriosis journey.
This is where we left off.
Speaker 1 (00:53):
We often say I have so much on my plate, I can't do
all this.
The correlation I make withthis is that a person that
doesn't have a chronic illnessmaybe has like a 10-inch dinner
plate.
Right, you go to a buffet, youget your 10-inch dinner plate,
you fill it with all the thingsand you still you're able to
enjoy it, you're able to fillyourself up with it.
A chronically ill person reallyonly has a 6-inch dinner plate
(01:17):
and if you try to shoveeverything from a 10-inch dinner
plate onto a 6-inch dinnerplate, it's going to overflow,
yeah, and it's going to overflow, yeah, and it's going to get
contaminated and the food'sgoing to touch.
It's going to touch.
And you're not going to be ableto, like, savor what's on your
plate.
You're not going to be able toenjoy it in its purest form,
(01:38):
right, and it's not going to benutritious in that standpoint,
because it's going to createmore anxiety.
It's going to, you know, allthose things for us ADHD or
autism spectrum people, the morewe try to pack on, the less
fulfilling it is.
Yeah, and so the thing thatI've learned is that my
chronically ill plate needs tobe managed, and so I have to
(01:59):
choose what I want to put on myplate.
Yeah, and is this?
Is it?
Am I just sampling it just totry it, or is this something
that I feel like is actuallygoing to be nutritious to me?
Is it going to fuel me?
Is it going to give me life,right.
And then the other part of that,too, is like we talk about the
spoons theory, which is reallyhow this kind of this podcast
kind of started with its name.
If you're sampling all thesedifferent things on your plate
(02:21):
using a new spoon, you're goingto run out of spoons if it's too
full and you're going tocontaminate it.
Yep, right, and so I just feellike knowing how big your plate
is and what you can put on itbefore it runs over and becomes
overwhelming is key.
Yeah, and I think that we tryto live in a space where we get
(02:44):
the 10-inch plate but we onlyhave capacity for a 6-inch.
Speaker 2 (02:48):
Yeah, yeah, I think we get really used to pretending
like we have it all togetherwith the 10-inch plate, when in
reality, like, the gravy'sspilling over the edge and the
mashed potatoes are falling offand the bread roll, you know, is
off the plate and rollingacross the floor, and but we
pretend like we have it togetherand we just don't.
And setting boundaries andsetting expectations for
ourselves that are reasonable isso important.
Speaker 1 (03:10):
Well and I think that's like for me in doing this
podcast, I love getting theinformation out I've had to step
back and say I don't have thecapacity to do a whole YouTube
channel with video right now,like, and I will maybe get there
one day, but I don't have thatright now, I don't have the
capacity for that.
And I think that for those ofus who have trauma from missing
(03:33):
out on things, that when we feelequipped to do something, we
overfill and it kind of sets usback and I think, just
understanding that you can'tjust continue piling things on
because you think you can,because you will burn out and
your body doesn't recover thesame as someone who doesn't have
any chronic illnesses, and sothat's something that I've
(03:55):
learned and I've had to continuelearning.
And there's those staples onour plate, right?
So for me, my staples on myplate are the faith, family,
friends and how to help servethose in the community yeah, and
the podcast is definitely a bigpart of that.
But if I continue to add thingsonto my plate that don't fuel me
and don't feed me, those otherthings don't get the attention
(04:18):
they need, right.
I just know that I have to takeless on and I have to be okay
with that, and I think that'ssomething that is really hard
for us, because society has toldus that we need to be
go-getters, we need to be ableto do the B's and C's of life,
when we're barely surviving an X, y and Z, yeah, you know, yep,
and so I feel like that's kindof something that I've learned,
(04:39):
because I put that expectationon myself to be able to
accomplish all this stuff, butmy body cannot handle that.
Speaker 2 (04:44):
Right, yeah, no, I'm almost 40 years old and I'm just
now figuring out how toestablish boundaries, how to
communicate clearly with peopleand be like hi, I need you to
understand that I don't feelwell and if that's too much for
you, then sorry, but that's notmy problem.
Like I'm not going to make itand I'm sorry if I'm canceling
on you or I'm sorry if I'm notwilling to set plans with you
right now.
Right, because I just don'thave.
(05:06):
You know, I am hour to hour onhow I feel sometimes and it's
like I could feel great in themorning and then, by the time
dinner rolls around and I'msupposed to go meet people, I
feel awful and I like can't evenget out of bed, and so I think,
setting those boundaries andlearning this, you know, and a
lot of it has just been overthese last few years where it's
like you know, it's okay, goingfrom being this go-getter and
doing all of the things to doingthe things that serve you only.
Speaker 1 (05:29):
And I think that's.
Speaker 2 (05:30):
I think it's healthy.
I think it'd be good even fornon-chronic illness patients to
do that and just take a stepback and really prioritize.
You know, and this disease kindof makes you prioritize what's
important to you.
Speaker 1 (05:52):
It does.
And I didn't realize that, Ididn't realize how whole body
consuming it is.
And even still, there are daysthat I think I can manage more
than I can.
And what I realized is that mybody takes more recovery time.
Yes, before I would think, ohwell, this is.
You know me being lazy, becausethis is what I heard.
Right, you're always tired,you're always, you just don't
want to do it.
You just, you know, like allthose things that people kind of
throw shade at you for.
(06:12):
And there's proof to back thisup.
There's scientific evidencethat points to the fact that
endometriosis brains have aharder time with fatigue, have a
harder time.
Their brain, the mapping oftheir brain, changes compared to
those who don't have it.
Yeah, it's scientific, right.
So, yes, I'm not functioningthe same as you, but that's okay
.
Yeah, and it's not to makeexcuses, I don't, because it's
(06:36):
not an excuse, no, it's areality, right.
And I think that if we canshift our mindsets from an
excuse to reality and do whatyou can when you can, then we
might be able to feel morefulfilled.
Yes, and not sitting in a spaceof but I wish I could, yeah,
yeah.
Speaker 2 (06:56):
I would agree, cause I think that we spend a lot of
time sitting there thinkingabout the what ifs and what
could have beens in our liveswhen we look at what this
disease has taken from us.
You know, I mean it's still mostof my late twenties and most of
my thirties at this point, andit's it's hard to you know not
mourn that and dwell on thattype of thing where it's like,
(07:16):
oh, I could have been doing this, I could you know.
Instead of that, we got tofocus on the what is happening
now, where we're at right now,and what?
we can control right now andguess what?
I can control how full my plateis.
Yeah, I have the control overthat.
You have the control over thatExactly.
It's just so hard to not gowith societal norms and do all
of the things and be the boss,babe, and be all of those things
(07:39):
that society wants us to be.
No, we're tired and we're sickand we need naps.
Speaker 1 (07:43):
Yes, Lots and lots of naps and we need to be okay
taking those naps and if thehouse doesn't get cleaned one
day, it doesn't get cleaned.
Speaker 2 (07:53):
It doesn't, and I think you and I are lucky that
we have really supportivepartners.
Like my husband is sosupportive, like and you know
I'll be like I'm having a roughday and he's like go take a nap,
go lay down, go put your feetup for a little bit, go do
whatever you need to do to feela little better, like I've got
this and I know your husband isthe same way, which is such a
(08:14):
blessing because there's a lotof I've been in other
relationships where it's notthat way.
Not that way at all, not thatway.
Speaker 1 (08:19):
But I do think like it's interesting to sit back and
observe our support systems andhow they've shifted and changed
, because now that my girls areold enough to kind of understand
some of what I'm up against,they have more questions and the
thing that this podcast hasgiven me is the ability to
answer some of those questions.
I can't answer all of them andI've been really honest with my
(08:40):
girls and saying sometimes I getmad at my body, Sometimes I'm
mad with the hand that I've beendealt, but I'm really grateful
on the other end and I lovehearing when my girls tell me,
mom, are you helping someone?
And I always say I hope I am, Ihope I'm helping people.
Speaker 2 (08:57):
You are.
Speaker 1 (08:58):
And they're like, okay, good, I want to do that
too and know and I think thatI'm able to now show my kids
through example what it can looklike to serve others and find
joy in that without overdoing it.
Yeah, but they're also seeingme grieve and I think that's
really something that I didn'tunderstand.
I always associated grief withdeath and now I associate grief
(09:21):
with anything that we have asense of loss for.
Speaker 2 (09:25):
And we have a lot of loss with this disease.
Speaker 1 (09:28):
Absolutely.
But there's also things that itbrings you.
It can bring you community, ifyou let it.
It can bring you work wives, ifyou let it.
Speaker 2 (09:36):
Great relationships with people.
Yeah, I've met people all overthe world since I've been
diagnosed with this and they aresome of my favorite people I've
ever met, like wonderful, greatfriends, people that we can
reach out to at any time of theday.
They'll answer our questions,they'll support us through stuff
.
It's really amazing.
Yeah, the community that we'vebuilt and worked our way into,
(09:56):
yeah, we've kind of shoved ourway.
We did shove our way in.
Speaker 1 (10:00):
It might've been prompted by a shot of tequila,
but we are there.
It might have been prompted bya shot of tequila, but we are
there.
Yeah, we are there.
That's not true, but I thinktoo there's that sense of
belonging when you aresurrounded by people who
understand you and who have beenthere, and although you have
other friends who are fantastic,it's not quite the same.
Speaker 2 (10:22):
No, no, my unchronically ill friends do not
understand what I'm goingthrough at all, and it's not
quite the same.
No, no, my unchronically illfriends do not understand what
I'm going through at all, andit's not their fault, I mean,
I'm glad they don't, because Idon't want them to feel the same
way that I've felt over theselast few years and but a lot of
them just don't understand.
You know, and and that's fine,they don't have to.
But I also have to set firmboundaries.
Speaker 1 (10:41):
But I also think that we it's important for us to
give space to that too yeah, andunderstanding and grace,
because they don't understand itand until you live in this
space, it's really hard tounderstand because it is so
invisible.
Most of the time it's not likethey can see a cast on our arm
or they can see us hooked up totubes, although some people are
and have all the bags.
Speaker 2 (11:02):
Right, you know.
Speaker 1 (11:03):
Yeah, there are those people and I just wish that we
could convey to otherseffectively the extent of which
this disease ravishes our bodies.
And that's something I didn'trealize in starting this podcast
, or even part of my story ishow much it affected my whole
bodily system.
And now I look at it and I seeso many patients who are like my
(11:26):
back is hurting, my hip ishurting, I can't pee, or I pee
too much, or you know, I'mconstantly pooping or I'm not,
I'm never pooping, or, and it'slike there's an underlying
reason for that, and I thinkthat we have become so
complacent in society to justtake doctors at their word as,
oh, you just have IBS or youjust are depressed.
(11:46):
We're so used and I'm guilty ofthis.
This is why I was with the samedoctor for so long was because
I felt this sense of loyalty andtrust.
But even with that, it is okayto explore more about who you
are and what you're living with.
It's not going behind theirback, it's understanding your
(12:07):
disease.
Speaker 2 (12:08):
Yeah, and it's your right.
Absolutely their feelings arenot your responsibility, and if
your doctor gets their feelingshurt because they're not
qualified to handle the issues.
It's not your fault, not yourresponsibility.
No, let them cry themselves tosleep at night when they see you
took yourself off the schedule.
Speaker 1 (12:24):
so right, the other part of that too, is we pay
their bills right, especially inthe us, oh yeah, but everywhere
, I mean oh, I've a few like skitrips and stuff for doctors
over the last few years right.
So if they're not serving you,it's time to look somewhere else
.
Yeah, and you have to kind ofbreak up.
And it doesn't mean they're anyless of a person, right, it
(12:46):
just means that they aren'tmeeting that need where it needs
to be met.
Speaker 2 (12:49):
Yeah, no, I mean, you know my story with my most.
I had a GP a few years ago thatI was seeing, really liked her
for a while and then my symptomsstarted coming back and I just
wasn't feeling great and Imentioned, you know, hey, I
really think it could be my endo, I'm not sure and she spent a
good solid five minutes arguingwith me about how it couldn't be
endo, cause I don't have auterus, and I was like that is
(13:10):
not how this works, not even alittle bit, even a little.
And she was unwilling to listento anything that I had to say,
any research I had to provide,and so I ended up ending that
doctor patient relationship,moved on to somebody else.
Absolutely wonderful experience, no issues.
Do not have to explain things.
It's amazing, you know, andfiring that doctor was one of
the.
I didn't go to the doctor foralmost two years, Right, Because
I was just like.
(13:30):
I am so discouraged I'm nevergoing to find a doctor that
believes me.
I'm never going to find adoctor that understands this
minus the excision surgeons butthey're not great long-term
doctors.
That's not their specialty,that's not what they do.
So I think it's good that youhave found a way to advocate for
yourself, that you've taughtother people.
I mean, you taught me how to dothat.
So I know you're worried aboutmaking a difference, but you are
(13:52):
the one that taught me.
Hey, like there's an entireendobattery episode, you can
fire your doctor.
I'm pretty sure you have thatin you already.
Battery episode you can fireyour doctor.
I'm pretty sure you have thatin you already?
Speaker 1 (14:02):
I probably did.
I'm a little feisty, you arereal feisty.
I thought I was feisty until Imet you and I was like that's my
soul sister.
No, I could.
I could get scrappy.
You could real fast.
I think that's the thing is.
We have to count on each otherto feel empowered, because we
get stuck in our brains and onour heads and in our fatigue and
in our pain and everything else.
You need someone to say that'snot okay, To validate the way
(14:25):
that you are feeling yeah, orsomeone to say have you
considered maybe doing this?
Speaker 2 (14:30):
Yeah.
Speaker 1 (14:30):
Yeah, I think.
Speaker 2 (14:31):
I called you after that appointment.
It was like this is awful.
And she's like move on, like gofind somebody else, find
somebody that you don't have toconvince that you don't feel
well, Right?
Speaker 1 (14:44):
You know, it's like that is such great advice that
you gave me.
I mean, gosh, if we helddoctors to a higher standard, I
question whether we would be inthis situation that we are now.
Speaker 2 (14:52):
Yeah, I would agree.
I mean, if there was bettermedical school education on this
, if we actually actually ifthey actually researched women,
if they actually involved us inlike clinical trials right
things right that affect women.
That would be nice so and youknow there's a lot of failures.
It's hard to talk about thatbecause you know there are so
(15:13):
many great doctors out therethat are fighting against the
system and it really is thesystem here in the us at least.
That just sets us up forfailure.
Speaker 1 (15:20):
I think everywhere.
I think this is a worldwideissue that we face Yep.
And I would say the one thingthat I've learned, and I
continue to learn to do, is howto stop invalidating myself.
Yes, yeah, because and it wasonly recently that this hit me
(15:40):
how much I was actually doingthat I went in to go see a
provider and I was telling herall these and and and.
Going into this provider, I waslike I don't even know what to
say to her, like I don't evenknow how she can help me.
And so I went in and I kind ofgave her the brief rundown, or
whatever, of everything I wasexperiencing and she goes.
She stopped me and she said Ifeel like you're trying to tell
(16:02):
me something, but you're alsoreally holding back from telling
me something.
She's like there's something onyour mind and something that you
need to tell me, but you'reputting up that wall and I lost
my ever loving mind because Ijust started sobbing and I have
never done that in a doctor'soffice After, yes, in my car,
(16:23):
absolutely.
I've never cried in aprovider's office and I kept
apologizing to her.
I'm like I'm so sorry, I don'tknow why I'm crying, and she
goes.
No, this is a safe space foryou to tell me everything.
She goes.
I can't help you if I don'tknow everything.
Speaker 2 (16:41):
Well, and what a sign that is for how mistreated
endopatients are, where it'slike.
All she said was just tell mewhat's going on and that is
enough for you to feel heard,because so many other doctors
just do not care.
They don't care.
Speaker 1 (16:54):
Right, and and I had to convince myself that I
mattered enough and that my bodymattered enough to talk about
everything going on and that Iwasn't going to be dismissed or
invalidated by her, right, yeah,there's so much fear in walking
into doctor's offices and notevery doctor's office, I do it
to some of the best doctorsbecause there's that fear that
(17:16):
they're not going to be able tohelp me, that there is no help
for me, or that it's not thatbad.
Right, those are like the chiefthings for me.
Yes, like I'm not worth havinga better quality of life than
what I already have becauseothers have it worse.
You know, the list goes on, andI just feel like we get stuck
in this trap of comparison toother patients, which we have to
get out of, because your storymatters, your symptoms matter,
(17:40):
your body matters, your feelingsmatter, your mental health
matters, and they shouldn't beinvalidated by a provider.
No, or yourself.
Right, you're feeling whatyou're feeling.
There's a reason for it.
Do we need to sometimes gethelp on a psychosomatic spectrum
?
Yes, because we have so muchtrauma, right, we have to learn
how to walk through it so weknow what is really affecting us
(18:00):
as opposed to what isn'taffecting us, right?
Speaker 2 (18:03):
Yeah, and when you think of the statistics where
you know it takes between, whatis it?
Seven to 10 years to getdiagnosed and an average of
eight doctors, is that right?
Which is crazy to me becausemine was like 30.
I know, but I feel like thoseare really low numbers.
Right, I do too, but even, buteven there, you know, if you
have eight doctors in a row,tell you that you're fine.
Eight doctors, eight people whowent to med school, I mean,
(18:25):
that's a combined.
What is that?
13 years in med school times,eight, I can't do them out that
fast.
Yeah, I'm not doing that fast,104 years of schooling and they
all told me you know and I don'tknow anything.
You don't know anything we'renot medical professionals.
We're just like two girls thatare nerds about endometriosis.
Speaker 1 (18:42):
That I didn't know.
I was a nerd aboutendometriosis until I started
this.
I had no idea how big of a nerdI was, until we started this,
and I'm like, wow, I'm prettynerdy when you can talk for
hours about endo and ourfamilies are like are you done
yet?
Nope, we're not, we'll neverstop talking so.
Speaker 2 (19:01):
But when you hear it you know, over eight to 10 years
, eight ish doctors on average,if that's if I'm remembering
correctly.
That's so damaging yeah, it isso damaging to your self-esteem,
it's damaging, you don't.
You can't trust yourself, youcan't trust how you feel in your
own body, you so you know thereis a lot of mental health
aspect that goes into thisdisease where it's you know, and
(19:22):
it kind of falls into that hey,I treated, I had the
hysterectomy, I had the excision, but I need pelvic floor
physical therapy.
I need regular physical therapy.
I need to learn how to poopagain like a normal person.
I didn't know how to breatheproperly.
I'm still working on thebreathing.
Oh, I'm still terrible about it.
Speaker 1 (19:44):
Yeah, I don't.
Speaker 2 (19:45):
My diaphragm does not work the way that normal
people's diaphragms work andit's just like I cannot breathe
normally.
But you also have to addressthat mental health aspect and
look at you know what, if youhave depression, if you have
anxiety over it?
And and try to find somebodyqualified to help you work
through that, because it isawful and it is so bad for your
self-esteem.
Speaker 1 (19:58):
So bad.
But I also think when you walkinto a new provider's office,
you're always afraid of whatthey're going to say.
What's the new diagnosis?
What's the new challenge?
What's the this, what's thethat?
It's twofold right, because,like, either you want nothing or
you want it all.
Yeah.
Like there's not a whole lot ofin between to that, because
you're like I want a diagnosis,I want to know why I'm feeling
this way, but I also don'treally want to know, because
(20:20):
then I have to deal with it andthat's like more time, more
money, more lifestyle changes,more of all these things that
feel compounding, which, again,is why talking to someone is
important, because we can'tcarry this load alone, and
that's why we started thesupport group, and that's why
it's important to seek outmental health counseling, so
(20:42):
that you don't have to carry theload alone.
Other people can support youalong the way and you don't
carry it all by yourself, andthey were amazing.
Speaker 2 (20:56):
Hey, I saw this doctor and it was the worst
experience I've ever had.
Oh hey, have you tried this?
Have you tried this type oftherapy?
Have you looked at acupuncture?
I found a great acupuncturistyou know, I mean we share so
many resources, you know, withthe expectation where it's like
do what you want with these,right, you know, if you want to
(21:18):
make an't, have this group.
You know, I mean, I would neverbe on the medications I'm on
now if it wasn't for you guys,cause I, the whole reason that
I'm doing a lot of the thingsI'm doing in order to fix myself
is because I've seen you guysdo it and it's helped you and
it's, you know, been hugelybeneficial for you and other
people in our group.
Yeah, without that support, wedon't have that yeah, and I
(21:38):
think, too.
Speaker 1 (21:39):
I think there's something to be said.
Something you won't get out ofa doctor's office is lived
experience.
Yeah, and sometimes we need, aspatients, to hear other
patients talk about theirexperience, because I think that
allows you the ability to takethe next best steps for you.
Yes, and and there's been a lotof things that I didn't really
(22:02):
correlate with my journey untilI talked to other people that
experienced the same thing andthen had a diagnosis or then had
a way that they were helpingsolve some of the issues that
they were facing.
That lived experience is whatcan carry you to the next stage
of healing, and I do feel like Ihave healed a lot in just being
(22:25):
in community with others.
Yeah, you know, which is whyyou know in this podcast, like I
always talk about, we need tobe part of this community,
joining us at the table, becausethe table is where you share
the most intimate meals, whichgoes back to my plate theory and
my spoon theory and all thetheories you see where my mind
goes.
Speaker 2 (22:43):
We're very food oriented here.
Speaker 1 (22:45):
Even though we can't eat it half the time.
Speaker 2 (22:46):
We don't eat most of the things, but we like talking
about it.
We'll talk about it.
We make good analogies.
Yeah.
Speaker 1 (22:52):
But I mean, if you're like, oh, let's go meet for
coffee and you have coffee at atable, you get to know more
about these people.
You get to know the moreintimate aspects of who people
are when you sit down at a tableand have coffee with them.
Yeah absolutely that's.
What we need as a community isto be able to feel safe enough
to sit at the table with othersand learn and grow and heal.
(23:13):
I think, honestly, I didn't seethat as a big element starting
this, but now.
Now that is like my wholetakeaway.
Speaker 2 (23:23):
Yeah, so would you say like your goals have changed
since you started endobattery?
I feel like they have, but how?
How do you feel like your goalshave changed over the last
three years?
Speaker 1 (23:35):
Uh well, I think part of it is.
I thought it was just forinformation and now I'm
realizing it's about community.
Yeah, and now I'm alsorealizing that I am right there
with my community and my goalsin doing this is to continue not
only advocating but meetingpeople where they're at, in the
(23:57):
space that they're at, andthat's why, you know, when I
have people on or whatever, Iwant to be able to try to help
build that bridge.
Because I don't know about you,but for me it was really hard
to advocate for myself in themidst of all my pain.
And there have been times, evenstill in the discovery phase, of
something else happening thatit's hard for me to advocate, or
(24:20):
it's hard for me to hear things, or it's hard for me to
advocate, or it's hard for me tohear things, or it's hard for
me to figure out my next steps.
But if this is a tangible wayto do that, I want to help do
that and facilitate that way ofhealing or information gathering
or whatever the case may be.
So my overall goal is not onlyto provide advice, good,
(24:40):
evidence-based material, butalso to meet people where
they're at, and part of that is,you know, emailing me info at
endobatterycom.
If you have questions, if youwant to hear about a specific
topic, or if you just telling mea little bit about your story,
you can email me and be like heyAlana, I just wanted to tell
(25:02):
you this, and it fuels me somuch when I hear things like
that.
But I really try to impress onpeople that this is not so much
my podcast as it is theirs.
I'm learning a ton.
I'm learning a lot about myself, about the endometriosis
community, about endometriosisas a disease, but also life past
excision.
When you're looking past theendometriosis and I think that's
(25:26):
something that we don't oftentalk about enough is life after
excision and the challenges thatyou can have, but also the good
things that you can have.
And so my goal with doing thepodcast and in my own journey is
just growth growth in community, growth in knowledge, growth
and understanding.
(25:47):
Growth in community, growth inknowledge, growth and
understanding and growing inloving myself more through this
journey and showing myself grace, because that's a really hard
thing for me to do, and I thinkwhen you have people surrounding
you like you and I talk all thetime but we've both come to one
another and said I'm so madright now and to feel validated
in that is huge, yeah, and weall need that space.
(26:08):
So I don't know, I think justshowing each other grace but
allowing space for grief andanger and frustration, but using
that to fuel change, isimportant.
It's beautiful.
I think that's beautiful.
Speaker 2 (26:21):
Well, I know I can speak for a good chunk of the
endometriosis community when Isay that you really are
contributing in a huge way tothe conversation.
You're contributing to theinformation that's available.
I've learned a ton from yourpodcast and I talk to you every
day.
Speaker 3 (26:39):
So, and I've learned so much, you know I mean you
have incredible guests.
Speaker 2 (26:43):
You do a really good job of balancing everything, of
talking about the emotional side, the physical side, all of it,
and I just I know you're makinga huge difference and it makes
me so proud to be your friend.
Speaker 1 (26:53):
So why you're sitting next to me is to boost me.
Speaker 2 (26:56):
Yeah, you know I'm here to make you feel good, so
but I mean it, I really do, Likeyou've changed my life in such
a positive way and I'm 100%certain that I'm not the only
person that feels that way, so Iknow you have a lot of
listeners that are grateful forthe content you provide and the
support you provide, even ifit's just while we're just
sitting at your kitchen tablewith microphones hanging out
(27:17):
talking, drinking our Ziggy'shashtag.
Speaker 1 (27:19):
Sponsor us hashtag, please.
We're not sponsored yet.
I am happy to do it and I youknow I've said this before to so
many people.
I didn't know I needed thispodcast as much as I do in some
ways, because it's been part ofmy healing journey yeah it's
been part of figuring out mypurpose yeah and I also want to
say that your purpose doesn'talways have to be easy, no, and
(27:42):
pain-free it doesn't.
And there are many days that Iquestion certain things and I
beat myself up in my own headabout certain things and I
question my ability.
Why am I doing this?
Am I?
You know all these things right?
Yeah, and I think that's onlynatural it is.
But I do think that if we allowdoubt to fill our heads without
(28:06):
motivation, then it's just thatit's just doubt.
But if we allow doubt to propelus into something more, to get
us thinking outside the box, toget us thinking outside the
situation, then that'sempowerment it is.
And that's empowerment it is.
And I just want to encouragepeople like if you have doubt,
(28:33):
even if it's in your own health,let it empower you to grow and
change and to step outside theknown box and into the unknown
box, because I bet you anything,the colors are brighter they
are.
You will be unstoppable fromthat point.
So that's kind of my mindset,and doing a lot of it too is
like I have doubt all the time.
But what's that doubt going todo?
It's going to propel me, it'sgoing to empower me.
Speaker 2 (28:52):
So no, and I think there's a huge, huge benefit to
service as healing.
Yeah, and there really is.
I'm sure there's science behindit somewhere.
Speaker 1 (29:02):
Mel Robbins probably has something like that, Mel, if
you want to come on please.
Speaker 2 (29:05):
Oh my gosh, that would be my dream.
Speaker 1 (29:07):
If she wants to come on and talk about that, that
would be.
Wouldn't that be impactful?
Oh everyone get on Put in themessages to Mel Robbins.
Speaker 2 (29:14):
Yes, because we love her.
And she really is brilliantabout this stuff and it helps so
much to a step outside of yourjourney and be beneficial to
other people on their journey.
Speaker 1 (29:27):
And that in turn heals some of those broken
pieces inside of us.
Yeah, absolutely, I 100% agreewith that.
I would say 1000, but that'snot an actual number.
Speaker 2 (29:33):
It's okay, we like exaggerating, it's fine.
Speaker 1 (29:36):
It's true Drama queens, according to all the
doctors.
Speaker 2 (29:38):
We're just exaggerating.
Speaker 1 (29:40):
Exaggerating Loud drama.
Queens, we're making things up.
Speaker 2 (29:42):
Yeah Well, I really appreciate everything that we
talked about today.
It is so fun being on your show.
I love when you have me on hereand I appreciate you being such
a good friend, such a greatpodcast host and such a fierce
advocate for patients withendometriosis in our communities
and around the world.
There are people listening allaround the world and it's really
(30:04):
quite amazing for me to seewhat you have turned this into,
and it makes me so proud to beyour friend.
So thank you so much forletting me jump in here today
and chat with you.
Speaker 1 (30:14):
I'd have you all the time if I could.
Speaker 2 (30:16):
You know I'm too tired for that.
I can't put that on my six inchplate but I'm happy to show up
like once a month.
So need me so I have enoughenergy for one podcast a month,
maybe, or with the right guests,maybe I'd show up.
Speaker 1 (30:28):
But everyone needs to tell Chelsea how much they love
her.
Speaker 2 (30:32):
Oh I, it would be good for my self-esteem.
I am.
I still have self-esteem issues, so I'm working through them.
I've got a great therapist butdon't say anything.
Speaker 1 (30:41):
Mean about me, yeah I can't take it, I'm too fragile.
Speaker 2 (30:47):
Oh no, thanks for sitting, making me sit down and
talk about myself yeah, no, Ifeel like it was time for people
to kind of get a recap from youand just learn about what
you've learned on your journey,because you've changed so much
over these last few years that Ihave, thank goodness goodness,
I'm not a stagnant pond.
Speaker 1 (31:04):
You were really annoying before.
Speaker 2 (31:06):
Thank you for listening today.
Until next time, please keepadvocating for yourself and for
others.
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