October 22, 2025 • 49 mins
A boxer in training. A terrifying spiral of symptoms. A life-saving surgery that changed everything. Jose Torres joins us to share how ulcerative colitis pulled him out of the ring and propelled him into purpose—building community, advancing equity, and living well with a J‑pouch in a city that isn’t designed for urgent needs.
We trace Jose’s path from misdiagnosis in Brooklyn to specialized care in Manhattan and the brutal logistics of public transit without bathrooms. He opens up about the cultural currents in his Mexican and Puerto Rican family—why speaking up took time, why steroids raised tough questions, and how food traditions collided with new IBD realities. The story turns on resilience: a colectomy and J‑pouch, early pouchitis, iron infusions, and then a decade of medication-free stability supported by smart nutrition, consistent exercise, and honest attention to mental health.
Jose also brings us inside the Crohn’s & Colitis Foundation—from literally ringing the office doorbell to roles in advancement, business development, and DEI leadership. We talk about real lived experience, research into disparities, and why culturally fluent care changes outcomes. Along the way, he shares practical tactics for managing frequency, a nudge toward pelvic floor physical therapy, and a grounded philosophy: don’t chase perfection, cultivate accountability and hope.
If stories of grit, culture, and community help you feel less alone with IBD, this one’s for you. Cheers!
Links:
- Camp Oasis- Crohn's & Colitis Foundation USA
- Camp Purple- Crohn's & Colitis Foundation New Zealand
- About IBD podcast with Amber Tresca episode- "IBD in the Hispanic Community with Dr. Oriana Damas"
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_03 (00:00):
Hi, I'm Alicia, and I'm a Rumbloment, and you're
listening to Mumble Moments.
SPEAKER_01 (00:04):
The podcast sharing real talk about the realities of
my TV.
This week we talked to JoseTorres.
Jose lives in New York City, hasalso done Kaleitis and a J
pouch.
We talked to him about what it'slike navigating his health care
in a big city with publictransportation and a distinct
lack of bathrooms along the way.
(00:25):
We talked to him about hisMexican and Puerto Rican
heritage and how that influencedand affected his family's
response to his disease.
We talked to him about what it'sbeen like to work for the
Crohn's and Kaleitis Foundationand how he changed his career to
better support his passion inhelping other people living with
these diseases.
And we talked to him about hisalmost career in boxing and how
(00:46):
he got involved in that.
We know you'll enjoy getting toknow Jose just as much as we
did.
Cheers.
SPEAKER_03 (00:54):
Hi, everybody.
Welcome to Battle Moments.
This is Robin.
SPEAKER_02 (00:57):
Hey everybody, this is Alicia, and we are really
excited to be joined by JoseTorres.
Jose, welcome to the show.
SPEAKER_00 (01:04):
Thank you guys so much for having me.
Really appreciate it.
SPEAKER_02 (01:06):
We have been trying to get you on for a while, so we
are excited to hear your storyand to get a chance to talk to
you.
First unprofessional questionfor you is what are you
drinking?
SPEAKER_00 (01:15):
I'm boring today and just have simple water because I
just logged off of work not toolong ago, so I haven't had time
to make myself anything else.
But I typically do put like alittle bit of lemon and honey in
my water to mix things up alittle bit.
SPEAKER_02 (01:28):
We've had a string of water lately, so that seems
to be the norm.
Which good job, guys.
Way to hydrate.
So and I'll continue to aspire.
Robin, what about you?
SPEAKER_03 (01:39):
Logan, my daughter Logan was just visiting, and she
left these protein coffees inthe fridge.
And Alicia just made the mostawful face.
And this is accurate.
It is not delicious.
But I'm gonna drink it, but itis not delicious.
And I always have water.
And now I'm wishing I had alittle lemon and honey in it
(01:59):
because of what you just said.
What are you drinking, Alicia?
SPEAKER_02 (02:02):
I'm gonna explain to everybody that you may hear some
background noise.
I happen to be in an airportlounge, and so you're gonna
maybe hear some conversations.
Apologies, but that does meanthat somebody brought me a
lovely glass of some youngwater, and so I can't fault the
fact that I get a chance todrink wine while I'm talking to
both of you, and very excited tohear how they're sorry, so I'm
gonna take cheers.
SPEAKER_00 (02:20):
It's bad luck to choose with water, so I'm gonna
exclude yourself from that.
SPEAKER_03 (02:24):
I didn't know that.
I just thought it was bad lucknot to drink if you cheers.
SPEAKER_00 (02:27):
Oh no.
I recently learned this myself.
SPEAKER_03 (02:30):
I'm gonna have to look this up and make a post of
this because we drink water.
We drink water on the show allthe time.
Like a lot of guests drinkwater.
SPEAKER_02 (02:37):
Yeah.
Oh no.
I feel I hope they're okay.
We haven't heard from them sincethen.
SPEAKER_03 (02:47):
I know.
I'm gonna fact check that.
SPEAKER_02 (02:48):
Well, fingers crossed that everybody's fine.
And so we will we will let youabstain from the tears.
Next question for you, Jose.
Please tell us your IVD story.
What brought you into ourcommunity?
SPEAKER_00 (02:57):
So I am a patient.
I have ulcerative colitis, butthe journey there was was quite
long.
I actually first started havingsymptoms um when I was around 18
years old, freshman in college,an athlete at the time.
I was training uh as a boxer,getting ready for the Golden
Gloves tournament, which forthose of you who don't know is a
really big amateur um boxingtournament here in New York
(03:20):
City.
So the plan was I had alreadybeen practicing and training for
a long time, but I was going tostart training to compete.
And out of nowhere, you know,symptoms started.
It started with a little bit ofblood in the stool, which I just
thought was nothing and would goaway.
And over months it evolved intodebilitating cramps and pain to
the point where I couldn't trainanymore.
(03:41):
I was too exhausted and tootired.
And it was even difficult to getout of bed and go to school.
I was also working part-timeretail job.
So my day pretty much lookedlike waking up early, going to
class, going to train, and thengoing to work until 12, 1 a.m.
going home and doing it all overagain.
So eventually that took a toll.
And I just didn't say anything.
(04:02):
And I think that's also verycultural, just coming up in a
Latino household.
We don't tend to say when we'refeeling things, unless it's
literally time to go to the ER.
But, you know, I was living withmy mom at the time and she kind
of noticed that wasn't my usualenergetic self.
Obviously, she knew I droppedoff with the boxing training,
not going as often.
So it was one day I literallycouldn't get out of bed.
(04:24):
So she was like, No, we need toget you checked at this point.
So we went to local hospital inBrooklyn.
They ran multiple tests, told meto keep a food diary, which even
at that time, because I was justvery health conscious being an
athlete already, made zero sensefor a doctor to tell me, well,
write it down.
If you end up back here, don'tneed it again.
(04:45):
Cool, but how am I gonna knowexactly what landed me here in
the first place?
So we just really weren'tsatisfied with the care.
Uh I was initially diagnosedwith Crohn's disease and nothing
was really changing.
I was in and out of thehospital, started doing my own
research on things, really foundthe role nutrition could and
should potentially play at thetime.
Remember, this was years ago,probably 16, 17 years ago at
(05:06):
this time.
So the level of education andknowledge, particularly around
diet nutrition, just wasn'tthere in diabetes space at the
time.
So eventually we found aspecialist in Manhattan that we
went to, which again, New YorkCity, public transportation,
flaring, you know, you guyscould fill in the blanks because
taking a cab round trip wouldhave been$200 every time we had
to go to the, you know, hospitalor to just see my GI in
(05:27):
Manhattan.
Just didn't have those resourcesto do that.
But we found a great doctor whoredid the test and properly
diagnosed me with ulcerativecolitis.
With that, was put on a regimenof medications, remission for a
year.
And after that year, I had aflare that didn't go away.
It got so severe, I had a dropout of college at the time.
(05:48):
So I had to take that semesteroff because of that.
At that point, the boxing wasjust completely done.
And yeah, I dropped down toaround 100 pounds.
I had a uh what's it called, thepick line for nutrition.
The only biologics on the marketat the time were Humera and
Remicaid.
And I believe only Remicaid wascleared for use in ulcerative
colitis.
(06:09):
So I pretty much had a decisionto make whether it was like
surgery or we try this lastmedication.
And, you know, being that young,I wasn't trying to jump to
getting an entire organ removedbecause the surgery would have
been, you know, a fullcolectomy.
So we tried the Remicaid andthat didn't work.
And the surgeons wereessentially like, we need you to
hang on for like at leastanother week or so because they
didn't want to do the surgerybecause I was already in such
(06:31):
bad shape nutritionally with myweight loss and just all the
complications you could possiblyimagine.
So I had to remain in thehospital for that period of time
and they did the J Pout surgery,which I know is typically done
in two operations, but mine theyhad to spread across three over
a period of nine months becauseI was in such bad shape for that
initial one.
(06:51):
They didn't want to extend thetime of that first surgery.
So yeah, so I had that firstsurgery, full colectomy, woke up
with an ostomy bag, had thesecond surgery six months after,
and then the final surgery wasthree months after that, with
the final surgery being thereversal, which luckily I had
healed well enough for them tobe able to do the full reversal.
And since then, I've I've had aJ Pouch ever since.
(07:14):
Very fortunate to say I've beenmedication free for the last 10
years or so managing with thewith the J Pouch.
And yeah, and through thisjourney, I discovered the
Chromebookitis Foundation, whichironically was only several
blocks away from my school thatI went to at the time.
So I don't know if you guys haveever heard the stories.
I know I've worked with you bothbefore.
(07:36):
But one day when I was feelingwell enough, I kind of just went
to the foundation's office.
I quit my retail job becausewhile I was going through all
this, I was still trying to dothat, but I had to quit that.
So I just went to thefoundation, I rang the bell, and
I'll never forget it was thenational office.
Someone answered the door, and Iwas like, Hey, I'm a patient.
I found you guys, it lookedgreat.
How can I get involved?
Can I like volunteer?
(07:57):
Part-time job, internship, likewhatever.
So they were like, We don't needany help here.
But the New York chapter is twofloors down, they need help.
So I went, went down, rang thatbell, and they were like, When
when can you get started?
Because they were extremely likeshorthanded.
And that's how I started, youknow, with the foundation as
well.
Was um, you know, and then Istarted my internships there,
and the rest is you know, kindof history.
(08:18):
I know we'll get into that in alittle bit, but yeah.
So yeah, that was myintroduction to the to the IBD
community.
SPEAKER_03 (08:23):
I do remember baby Jose as an intern.
I do.
I I do that.
Yes, I do.
I do not rem know that that'show you got started with the
foundation, but I do rememberemails from Jose's intern.
Yes.
SPEAKER_02 (08:41):
I love that you just sort of walked in and they're
like, Yes, please, when can youstart?
That's that doesn't happennowadays, I would imagine,
unfortunately.
SPEAKER_00 (08:48):
I don't imagine a lot of people just straight up
go and ring the belt placeseither.
So it was just you know acombination of just luck and at
the time they needed the help.
And I wanted to take a look atthe case.
SPEAKER_02 (08:58):
It was the Kismet, is that what that's called?
I know when we were talking toTina, but there was definitely
some cultural implications forher as it related to her
treatment choices and surgeries,and and you know, how she talks
about how the family is soinvolved in any decisions and
about how you know doctorsreally need to pay attention to
that with that particular SouthAsian community.
What was that like for yourfamily?
(09:19):
What is it like for the Latinocommunity of two white girls?
And then, you know, we're gonnasay we don't know about this.
That's number one.
And then a little bit about justmanaging your JPodge, too.
Because I mean, like the way yousaid it makes it sound like
everything was just like, andthen it was done and smooth
sailing.
And I know that probably wasn'tthe way it goes, based on what I
hear Robin and Stacey talk aboutwith their J Podges.
(09:40):
So if you wouldn't mind talkingabout kind of the two pieces,
obviously those are two entirelydifferent questions.
So start with whichever oneyou'd like.
SPEAKER_00 (09:45):
Yeah, no, absolutely.
Um, the cultural question isreally important.
Thank you for even for askingthat uh deeper.
I mean, yeah, the first thingagain is it took me so long to
say I was feeling bad.
And that is very cultural of aLatino household.
And again, like we we're taughtnot to complain, you know, don't
cry, like kind of all of thosethings.
So just being that embedded inme, I was just like, oh, this is
(10:07):
a stomach bug, I'll fight itoff, you know, it'll go away.
And it got to that point where,you know, maybe had I seeked
help sooner, maybe thetrajectory would have been
different.
But that was definitely oneaspect of it.
When it did come to thetreatment, again, also, you
know, culturally, we're hesitantand very resistant to taking
strong medications.
So when I was prescribedprednisone with, you know, the
(10:30):
steroid for the first time, wehad a lot of questions there.
It was like, is this absolutelynecessary?
Is there any alternative?
Like, you know, just to makesure that was necessary and it
wasn't just one of these thingswhere a doctor is just like,
here, take this pill, make youfeel better.
Because again, that's justsomething we're very skeptical
of.
And just if we don't have totake medication, we'd rather
not.
But this was obviously not oneof those scenarios.
(10:51):
But there was a lot of questionsand hesitancy and concern around
that.
You know, my mother was readingthe all the fine print on all
the possible side effects andlike, you know, everything.
So that was that was a layer offood while I was sick was also
tricky because a lot of foodacross, you know, different
cultures and whatnot aren'tnecessarily IVD friendly per se.
(11:13):
So that was also difficult.
Uh, and we try to navigate thatagain at that time on our own,
knowing that food was importantand how to do that.
And me being the health-orientedperson I was at that time too,
just being an athlete, you know,being told you can't eat, you
know, raw fruits and vegetablesand these things that for me
were like staples, like, youknow, trying to figure that out.
(11:33):
So the the diet, the eating wasdefinitely another part.
There was quite a bit of guilttoo, mainly, I think, from my my
my mother or weighed that veryheavily because we don't know
where it came from.
So that was questioned.
It was like there was no familyhistory of this.
Why did this happen?
Is it something you know she didat a very, very difficult
(11:54):
childhood?
So looking at that, and eventhere's studies out now that
say, like, you know, earlystress could be a you know
indicator of all that stuff.
So it was just a lot of, youknow, guilt.
But she was by my side everystep of the way.
Like she would sleep on a cotnext to my hospital bed on the
nights that I was there.
You know, my my grandfather, whomy grandparents raised me for
the most part, my grandmotherwould not come to the hospital
(12:15):
because she just cannot bear tosee me in that condition.
So my but my grandfather wouldcome and take care of me and
make sure I was good, like withthe bathroom stuff.
He would come to the bathroomwith me in the hospital and, you
know, make sure I was able to doall the stuff.
You know, my aunt and littlecousins would come.
So it was very, you know, thefamily kind of rallied, you
know, behind it.
But there were a lot ofquestions, a lot of concerns, a
(12:35):
lot of what ifs, a lot of, youknow, why, how, you know, when.
But yeah, so it was it wasdifficult.
But at the same time, it was thereinforcement of the family
unit, especially with my mom.
Cause you know, growing up, mygrandparents raised me.
She was kind of present, notpresent, kind of like on and
off.
And it was, it was actually thatjourney that brought me closer
(12:56):
to my mom.
Because that was the first timewhere I was just like, all
right, like you, you are mom,like you are my mother, like
you're here in this time that Ineed you the most, and you're
you're here fighting this fightwith me.
And yeah, there was a lot of youknow things there, but it was
mainly around the medication,the food, and the just the
questioning of the medicalsystem, especially after being
not diagnosed properly and youknow, that disparity of care
(13:18):
because of where we were inBrooklyn, right?
Like that hospital was clearlynot equipped, and that's a
problem across the country wesee with a lot of chronic
diseases, where depending onwhere you live, you're not going
to receive the same quality ofcare.
So that's definitely something Ifaced, you know, just because of
the community I was grew up inand I lived in.
I didn't have readily availableaccess to the best possible
quality of care.
I had to, you know, go toanother borough to to get that,
(13:41):
to get me in in better shape.
But yeah, I mean, I'll that'syou know, cultural-wise, if
there's any other, you know,questions or anything from what
I've said, happy to dive intoanything deeper.
SPEAKER_03 (13:50):
I just wanted to reiterate, you were in Brooklyn
and you went to a hospital, andyou still I think people in
other parts of the countrythink, oh, well, he's in New
York.
Like, there's the best hospitalsin the world in New York City.
And so Yes, that is true.
And also ease of access isn'tnecessarily there, even if you
(14:10):
are in a large city.
So we understand this, like veryfamiliar with the medical
industry and how that works, butI just feel like other people
think that if it's only if I wasin this better place or this
bigger city or this whatevermight have better access, and
that's not necessarily true,even if you are in the cities.
I mean, yeah, even when I droveto Houston to get better care, I
(14:30):
still there was still leftthere, right?
SPEAKER_02 (14:33):
So I think that's an important point, Robin.
And that's you know, tohighlight that even you can be
in the one of the best citiesfor medicine ever and still it's
not accessible to you because ofsomething like public
transportation.
So yeah, and okay, I have a veryrandom, hopefully fast answered
questions of is is there arethere public toilets and like
the the train stations and thepublic, the subway stations?
SPEAKER_00 (14:54):
There's there's not.
So I was gonna that's what I wasgonna comment on Robin's comment
of people thinking you're in abig city.
Yeah, for those not in New Yorkand not familiar, New York City
is much larger than most peoplethink who haven't been there.
Like each borough alone isprobably the equivalent of a
city in any other state.
So just for context, where Ilived in Brooklyn compared to
(15:15):
the hospital that in Manhattanwhere I was getting care, that
was an hour long on the trainone way, to your point, without
access to a restroom, becausethere are no restrooms in the
subway stations.
So yeah, that was extremelydifficult.
Like honestly, if there wererestrooms in the subways, I
wouldn't touch them anyway.
SPEAKER_02 (15:33):
I mean, that's there.
I did, but yeah, my friend wentinto a public toilet in the
subway station in Beijing andshe immediately walked out and
was like, Nope, not doing that.
It just seems strange to me.
It seems like that would besomething where they would have
to have something just because,but I guess there's the yeah,
wrong lens.
Okay, and I'm gonna come back tothe question about JPouch.
Put that one back on the shelffor a second.
Yep.
Am I correct in recollectingthis that you are involved with
(15:56):
the Latino virtual supportgroup?
Or am I not remembering thatcorrectly?
SPEAKER_00 (16:00):
No, not the support group.
I am involved with our employeeresource group within the
foundation.
Okay, and I serve as you know,some a leadership role with the
with that, with like theinternal employee resource
groups and diversity, equity,inclusion efforts within the
foundation.
Cool.
SPEAKER_02 (16:16):
Okay.
Maybe talk a little bit moreabout that one as it relates to,
I mean, because there are a lotof employees at the Grunt and
Glide Foundation that either arepersonally affected themselves
and or have a family member.
So in being involved in that,what changes have you seen at
the foundation because of havingpeople really informing that
lens and helping to really shapehow the foundation should be
responding to these differentcommunities?
SPEAKER_00 (16:37):
Yeah, no, I definitely have have seen a
change in in not just sayingthis, it's it's been genuine.
I know even before 2020, therewere plans to do more in that
space.
2020 just kind of acceleratedeverything.
But yeah, I mean, even just thefact that there's really
investment from the top in theseemployee resource groups.
(16:58):
Like this is a strategic effort.
It's a priority for theorganization to make sure we
have these spaces for employeesof diverse backgrounds to feel
comfortable and heard and seen.
So, yeah, I mean, that's youknow, we hold what we call
conversation corners every monththat usually align with some
kind of uh commemoration or orcultural acknowledgement, such
(17:20):
as Black History Month or, youknow, Pride Month or Hispanic
Latino Heritage Month.
And we've gotten to a placewhere those have become very
real conversations about thosepeople's experiences within
their community.
And where we can, we tie it backto our mission and you know,
IBD, but that's not really thefocus of it.
That's like if it fits, great.
(17:40):
But the focus is really to sharereal stories, real challenges,
and celebration as well, to growthat empathy, to kind of break
down those barriers that we seein society, right?
But within the foundation, whichis a beautiful thing.
And then externally, I know thethe foundation continues to do
work and and research tounderstand the disparities of
(18:02):
care, to understand thesedifferent factors so that we
could better serve thecommunities and awareness of
familiarity is just a huge issuealone, you know, within you
know, culturally diversecommunities.
But yeah, I it's been reallynice to see it again, not being
done as a check mark like someother organizations may do and
be like, we're doing this thingjust to say we do it.
And it's very surface level.
(18:23):
The foundation is really puttingmeaning and substance behind the
work in that space, which is whyI'm a part of it, to be to be
completely honest.
Because if I felt like it was acheck mark, I wouldn't be
involved.
SPEAKER_02 (18:35):
I'd love to hear that because I think there has
just been so much morerecognition, and especially as
some other groups started toevolve that focus a little more
specifically on certain groups,it's really lovely to see the
foundation figuring out how theycan make sure that they're being
culturally sensitive andchanging.
Because, you know, as a whiteperson that worked at the
Clinton Claire Foundation, it'sgot a lot of white people.
And so I think it's reallyimportant that they're sort of
saying how do we make sure thatwe're not losing perspective and
(18:57):
that we're making sure thatwe're being responsive to the
needs of the entire IVDcommunity.
And then also, you know, maybehow can we be working with some
of these other groups that arestarting to, you know, find
their place within the communityas well.
Robin said she got an email fromBaby Intern Jose.
So how has your job evolved?
Because I came later and so Idid not know you as baby intern
(19:20):
jose.
So tell us how your job hasevolved in the foundation and
why.
Like, why did you choose to movein the way you did?
SPEAKER_00 (19:28):
So before I get into that, my educational background,
I initially started going toschool as a finance major.
After my experience, like Iwanted to be a financial
advisor.
That was kind of my thing for noother reason than the salary,
right?
It's pretty much like you go toschool, be a lawyer, be a
doctor, be a you know, WallStreet guy, like whatever.
So I was three classes away fromfinishing the degree by the time
(19:48):
I had had this IBD journey and Idid a complete 360.
My minor at the time was incorporate communications.
So I switched that to my majorand I minored in sociology.
And really, my experience withthe foundation and a sociology
professor, which I will neverforget, who like really showed
how the world worked and didlike real case studies to the
point where I remember handingmy final and I was like, you
(20:10):
probably shouldn't be teachingthis at a business school, but
thank you, because now I wantnothing to do with the business
that perpetuates all thehorrible things in the world.
But anyway, that led me to thenonprofit.
So when Baby Jose rang that belland was very graciously accepted
in the New York chapter as anintern, I started helping with
their take steps walk.
I used to go out and put flyersin any store that would take
(20:33):
them.
I would help with basic dataentry Excel sheet stuff.
That eventually turned intohelping out with, you know,
special events, again, moreorganization admin support type
work, which evolved into myfirst paid opportunity because I
was an intern so long ago,interns didn't have to be paid.
So my first paid opportunity wascamp admin, which I'm locking my
camp oasis fleece right now.
(20:55):
And I'll never forget processingthose applications and just
reading these kids' stories.
And I remember I asked the campdirector, does my job get to go
to camp?
And they were like, No one'sever asked that question before.
Let me find out.
So they were like, nottechnically, but you can go as a
volunteer.
So I was like, all right, great.
Like, where's the application?
So I actually startedvolunteering.
(21:16):
And it was up until the last twosummers were the first two
summers in the last decade thatI did not was not a volunteer of
Camp Oasis.
So that became a very just keypart of my life and my part of
the IBD community and peoplethat I've met through there.
But yeah, so that was that.
And I remember graduation timewas coming up.
I also helped the team challengeto kind of saying flyers, the
admin.
(21:36):
So pretty much any chapter eventI supported at an administrator
level.
So I really got to learn fromthe ground up how the foundation
operated.
I also interned a bit at thenational office in both the
finance and HR department.
Finance, because that was aninterest, and I was just like,
you know, figure it out.
So I used to do chapter bankreconciliations.
And then HR was just anotheropportunity where I can learn.
(21:57):
So I was, you know, just learneda little bit there.
And then I was graduatingcollege finally, and I'll never
forget, I won't name her, but ifshe hears this, she knows who
she is, was very much advocatingfor me to be hired full-time.
And there was just not aposition open.
But there's another person whois my mentor and very, very dear
friend who was the teamchallenge manager at that time
(22:19):
who had left about maybe six toeight months before I had
graduated to anotherorganization.
She actually reached out to mewith the open position at
Serious Fun Children's Networkbefore I'd even graduated.
And I will never, ever, ever beable to thank that woman enough
because she is well connected.
She has a great network.
And I always ask, why did yougive me the opportunity
(22:41):
interview for that?
Because I was just this rougharound the edges kid from
Brooklyn and you know, justlearning about all of these
things.
So that led to me going to workthere for a few years, kind of
supporting their camps, whichwas great because I loved Camp
Oasis.
So serious fun is like CampOasis all over the world.
So it was a great experience.
I learned a lot about CRMmanagement there, fundraising.
(23:03):
I did front-end fundraising.
I managed the peer-to-peer teamfor like small, you know, walks
and things like that.
And I also did a lot ofoperational, you know, CRM
finance.
It was very diverse role, whichwas great because it just added
to everything else that I hadlearned.
So I was there for a bit.
Then my mentor left to a smallerveterinary startup organization,
(23:25):
which she brought me there withher.
So that was great because I gotto learn to see like what it was
developing a developmentdepartment from the ground up
because they didn't have one.
So my mentor was recruited tolike start up their fundraising
efforts.
And she brought me on to kind ofsupport that and build out the
operational piece of it.
So with that, it was likebuilding out websites, you know,
creating policy, procedure, CRMimplementation, kind of all of
(23:48):
that.
And then it got to a point whereI kind of felt like I did all I
could do there.
And, you know, I was looking forwhat's next in my career.
So of course I circled back tothe Crumbs of Kaleitus
Foundation.
There was a position open intheir advancement department,
which works with majorindividual donors and
foundations.
Uh, so I applied, I interviewed,and I got that.
That was great.
I worked with them for aboutfour, four years, I think.
(24:10):
And then I was poached away by aglobal consulting firm, CCS.
They're a global nonprofitconsulting firm.
So I went with them because thatwas kind of like that, it was a
very difficult decision, but itwas one of those offers that
that point in my career that Icouldn't say no to.
And the foundation was superunderstanding and supportive.
So they were like, Yeah, like doyour thing.
And if you're ever willing tocome back, and there's a
(24:32):
position open, you know, wecould discuss.
So I went and I did that.
And that was that was a veryfulfilling project because it
was essentially directing afeasibility study for Texas
Children's Hospital and theirGlobal Health Initiative, which
focused on pediatric andmaternal care and programs in
Latin America and Africa.
And that project helped break myimposter syndrome because I was
in a room with experts thatwanted to value what I had to
(24:54):
say.
So that was the first time whereI was like, okay, like I belong
here, like I belong in thisspace.
It was just a great experience.
I grew so much in that year withthem.
And then a position opened upback with the foundation in 2020
with their business developmentteam.
So leadership from thefoundation reached out.
You know, I agreed, we had thatconversation, and I came back.
Ironically, the week before theworld shutdown was my first week
(25:17):
back at the foundation.
And I've been on their businessdevelopment team, you know, for
the last five years, you know,ever since.
So that's kind of like the longand short of, you know, my
career trajectory and how it'sevolved.
But it's been great.
I've been able to learn so manydifferent skills and, you know,
utilize things in differentways.
And yeah, I really, really enjoymy role now, you know,
currently.
And even that, I've been able toevolve it, you know, over the
(25:38):
last five years and continue togrow in my career.
So yeah, it's it's been it'sbeen great.
And I'm just super fortunate forthe advocates that I've had
throughout my career that havehelped mentor me and kind of
helped put me in these positionsfor me to showcase myself and
kind of get to where I'm at.
SPEAKER_02 (25:52):
Fascinating.
Robin, anything else you want totalk about here?
SPEAKER_03 (25:55):
J Pouch.
SPEAKER_00 (25:57):
Yeah.
So the the JPouch journey, itwas it was interesting,
especially when I had the ostomyfor about nine months, you know,
in between surgeries.
I remember being on the train,like covering myself, even
though the doctors were like,There's athletes that play with
this thing, like you're fine.
It's just that mental thing of Iliterally have a piece of my
organ hanging out of my body.
Oh, gotta protect it.
(26:18):
But yeah, so that that was a lotof learning how to maintain it,
how to care for it.
You know, being in college too,just the the mental aspect of
it, you know, definitely didn'tgo out with friends as often.
Just like your normal collegeexperience, that was a pretty
difficult time.
And I know it's better knownnow, but just the overlap of
mental health, you know, issuesdiagnosed or not with IBD
(26:42):
patients, I think is althoughit's more like that conversation
is being had, I still think it'sextremely understated the impact
that this disease has in variousphases of the disease, right?
Like whether you have an ostomy,whether it's a J pouch, whether
you're flaring, whether you'reon medications, like all of
these things impact patients inways where you know it
definitely does affect yourdaily life.
(27:03):
And you have to create your kindof own sense of normalcy with
that.
So that was definitely thejourney while I had the ostomy
bag for sure.
Post ostomy, I was ready to go.
I was just like, when can I workout again?
When can I?
Because I was used to being thisathlete, and again, this is
post-surgery.
I'm still 100 and somethingpounds.
Like I'm still ways away fromyou know physically where I was.
(27:25):
So they were like, no, you know,take it easy.
We'll we'll give you the clear.
I started asking a lot ofquestions around again, diet
nutrition.
And I just started puttingthings together myself.
Like it was just like, allright, I can't eat kale or
spinach, but I could juice it,right?
Like it's the roughage thatmakes it not recommended, which
I know is now a thing that isbeing spoken about.
I forgot what they're callingit, like the form change or
(27:47):
something like that.
But yeah, finding ways toincorporate those healthy habits
back because that's what made mefeel good.
Like I was always, you know, Iwas boxing and I couldn't do
that anymore.
But still, physical fitness andhealth was extremely important.
And now it's it had that addedlayer of, well, now it's super
important because I have thisdisease, right?
So when they were when they wereable to reverse it, I did pretty
(28:10):
well for a while.
I had two cases of pouch itis inthe first six months of it,
which was not fun, but at leastthere's an antibiotic for that.
So that was that was fine.
I had to go regularly for ironinfusions uh for about like the
first year after my J pouchsurgery, until again I figured
out a better diet to the pointwhere it was just like your iron
(28:31):
is kind of high.
And then I looked at everythingand I was eating, and it was
just like, you know, quinoa andbeans and these other things.
I'm like, oh yeah, the ironcontent is really high in this
stuff.
I could probably like cut backon it.
But it was great because Ididn't need the infusions
anymore.
And yeah, just finding littlethings, even like the lemon
butter, you know, with withhoney, like there's health
benefits just putting lemon inyour butter, like occasionally.
(28:52):
So there's just these thingsthat I found that that worked
for me that led to me beingmedication free.
And it was just really managingit through diet, nutrition, and
being active.
Like again, I don't think a lotof people know the effect that
exercise has on the immunesystem, right?
Like that literally strengthensyour immune system when you're
(29:12):
physically active.
And yeah, I just went on thislike nutrition binge of like
watching these documentaries ondiet and health and you know,
kind of how the body, if it's ifit has the nutrients, it's it's
biologically designed to likeheal and like protect itself and
do better.
So I just like just reallylearned all of these things and
then I I felt it working for me.
(29:34):
So I I stayed the course.
I mean, currently, luckily, theonly thing I deal with is just
frequency, which depending onwhat I eat, you know, could be,
you know, more often than not.
I don't sleep through a night,it's very, very rare.
So that that is another thingbecause typically I'll get up at
least once, you know, at nightto use the restroom.
It's most often like two orthree times.
(29:56):
So I like to just say I'm likealways tired, it's just my
normal.
So that I don't feel Tiredbecause this is just this is
just what it is for me.
But you still find the energy todo all the things that people
need to do, you know, in theirlives.
But yeah, I've just been, youknow, again, just very fortunate
and I definitely don't take forgranted because I know the
reaction you guys gave, and I'mlike, I haven't been on
(30:16):
medication for 10 years, evenwith a J pouch.
Friends through that I metthrough camp that have a J pouch
and they're still on some kindof medication or they have like
frequent pouchitis and like allthese other, all these other
things.
And yeah, I'm just grateful.
You know, my GI team is isfantastic.
I mean, I I can't complain, andI'm I'm I definitely know I'm
the exception, not the rule, butI'm grateful.
(30:37):
And if anything, it's just likeif I can do it, others can.
Like if you have a J Pouch andyou find what works for you and
and manage it right, it's justeverything is so individualized.
Like what works for me may notwork for you, which is the
difficult part, even with dietnutrition, right?
Which is why a dietitian andnutritionist is super important,
but those are very seldomcovered by insurance.
And that's a whole other accessto care thing that we can have a
(30:59):
whole nother hour-longconversation about.
But it's it's really importantpart of it.
But yeah, I mean, that's myexperience has been all things
considered really great with theJ Pouch.
And I'm super grateful that thatit was a treatment option for
me, even though in my case itwas literally emergency surgery.
It was just like, if we don't dothis, you're you're gonna die.
Like I wouldn't be here today,literally, if I, you know, the J
(31:22):
pouch wasn't an option since therummage key didn't work and I
was in such bad shape.
So I definitely don't take thatfor granted any day of the week.
SPEAKER_03 (31:31):
Okay, I am curious about the two or three times a
night because I wonder if yourdoctors have ever told you to
get pelvic floor physicaltherapy.
And the reason that I ask that Iasked this is because personally
I have found that when I'm inseasons of like going to the
bathroom a lot, like havingflavor or just had TBO when I
(31:52):
was going to the bathroom seventimes a night.
It was ridiculous gettingridiculous.
I found that like now, eventhough I'm like six months out
from antibiotics and not havingto worry about it, I'm still
going to the bathroom often.
And I almost feel like my bodygot in the habit of going to the
bathroom.
And so as soon as I finish thisnext work trip, I'm going back
to pelvic floor physical therapyto kind of help my body relearn
(32:16):
how to hold it.
So I'm very interested if thatwould help you because I feel
like you're with athlete, withworking out with all that,
there's muscle memory.
And I feel like it works in theopposite way for us going to the
bathroom so often.
Like our body is just like, wego to the bathroom this often.
That's what we do, that's how weget through the night.
(32:36):
But I'm guessing the way thatyou said that it's interesting,
no one's ever talked to youabout pelvic floor physical
therapy.
SPEAKER_00 (32:41):
No, when I brought that up, it's just like, well,
you can take a modium.
And I'm like, nah, going back tothe not taking medicine.
So yeah, but no, I'm definitelygonna look into that.
I did not know that was a thing.
SPEAKER_02 (32:52):
Yes.
So go back and find the episodewith Claire Hamnet.
Claire is the pelvic floorphysical therapist, and we
talked to her a lot aboutworking with men and physic and
pelvic floor physical therapy.
And you might take somethingfrom it because I yeah, Rob,
what Robin is talking aboutmight it's sort of resonates
with me as a non-medicalprovider.
SPEAKER_03 (33:13):
No scientific background except for that.
We've interviewed pelvic floorphysical therapists, and I have
gotten pelvic floor physicaltherapy myself because of my
details, right?
Because of the surgeries thatI've had.
When you have surgery like wehave in the pelvic area, it's
gonna affect those muscles.
I mean, when you're working onyour exercise and you're
building up your core, that itdoesn't necessarily always get
deep enough to do your pelvicfloor.
(33:36):
So it might help you.
You might get down to one time anight.
And then the other question in acompletely different direction
about the JPEG is 10 years.
Have you gotten to a point whereyou're like, okay, this is it
now?
Like I'm in remission.
Or I don't know, for myself, Ifeel like I haven't had a really
(33:57):
long remission for 25 years.
And so, like, even now, someoneasked me yesterday, how are you
feeling?
And I'm like, I'm feeling good.
I don't even want to say I'mfeeling great because like if I
say that, then when's the nextactive disease gonna come?
When am I gonna get intestinalbacterial overgrowth again,
(34:19):
which is gonna make me think I'min a flair, but it's you know,
it's not actually disease or so.
I just I guess I'm looking for alittle bit of hope.
Have you gotten to the pointwhere you can say, like, I feel
good, I've been in remission for10 years and not have that
little like devil on yourshoulder saying, uh-uh-uh, if
that makes sense.
SPEAKER_00 (34:37):
Yeah, 100%.
Yes, but I will never use theword great, right?
Like for me to say I feel great,like things need to be
exceptionally, likeastronomically in a whole nother
stratosphere of like of good,right?
So the highest I'll ever go islike I I do feel good, but I
always follow that with I'mgrateful for it, because I know
(34:58):
it's not everyone's I dohonestly believe this was long
term.
And honestly, even when I wasgoing through the diagnosis and
the surgeries or whatever, mymom would always be like, even
to this day, she's like, Are yousure you can do that?
You're sick, like da-da-da.
Like, you know, I see her once aweek, we have dinner.
She's like, Are you sure you caneat corn?
I'm like, I'm I'm good.
(35:19):
But you know, to that end, evenwhen I was going through that,
in my head, I kept tellingmyself, I am not sick, right?
Because I couldn't allow myself,and it was definitely a defense
mechanism, but I couldn't allowmyself to even admit that to
myself at that time because Ifelt like that would have
brought me down and I wouldn'thave had hope like going through
all that.
So similarly, like in this, inthis sense, there 100% is is
(35:43):
hope.
And I I strongly believe that itthe tricky part is the person
finding what gets them there.
Right.
That's that's the difficultpart, but it's it's possible.
But yeah, I always say, yeah,good.
I do believe this is a long-termthing as long as I do my part,
which is another thing.
Like patients definitely need tohold themselves accountable.
I know that's really hard,especially like telling someone
(36:04):
with a chronic disease, like,hold yourself accountable for
your actions too.
Because I have friends thatagain camp, there's an ongoing
camp chat, and it's almost likea medical advisory board if you
look at it, because it's like,hey, I have this thing, anybody
else, da-da-da.
And it's just like, bro, youwere just posting that you was
having pizza and beer allweekend and now you're feeling
sick.
Like, would yeah, you're gonnafeel sick.
(36:24):
You know what I mean?
So it's holding yourselfaccountable, making the healthy
lifestyle choices that work foryou that help you feel good and
being consistent with it.
Um, but yeah, again, I do sayit, but I always say it with
gratitude because to your point,Robin, like I don't know if next
week I'll have pouchitis orflare up or at some point have
to have an ostomy permanently,because that's also a very real
(36:46):
reality for JPouch patients,right?
You know, I get thosescreenings, but you know, those
for you who don't know, theJPouch is a full colectomy, but
they do purposely leave aboutone to two centimeters of the
colon still there for them tomake that connection.
There's still a chance of coloncancer with that, which is part
of the pouchoscopy screening.
So I don't think about thesethings, but in the back of my
mind, it's just like I'vealready experienced what it was
(37:09):
just like to literally almostnot be here.
So the fact that I am here andI'm doing well, it's that helps
me keep myself accountable to dothe things that I know I need to
do to keep myself healthy andgood, but it also helps me, you
know, have this attitude ofgratitude every day.
Because to your point, Robin,while I do feel good and I do
feel like this is long term, youreally don't know.
(37:31):
So yeah, just gotta make themost of it when you are feeling
good.
And hopefully that creates adomino effect.
SPEAKER_03 (37:37):
I do agree with you because I feel like for the
longest time, even whensomething was wrong, no one
would have ever known it.
And it's not because I washiding, it was for my own
personal, like this is how I'mgonna get through the day.
Like, yes, I have this, but I'mstill gonna conduct my life like
nothing is wrong.
Right.
And so even like with this show,sometimes I have to say, okay, I
(37:57):
can't share my stuff anymorebecause it's starting to mess
here.
Like, I need to keep thispositive outlook, I need to be
hopeful, I need to look on thebright side, see the silver
line.
Like any cliche that you canthink of, like I had to be
positive and do what I could doto keep going and never say I'm
great too.
That's that that stood up withme.
And also don't disparage pizza.
(38:17):
That's one of my safe foods.
SPEAKER_00 (38:19):
Listen, when I'm feeling it, I can kill a whole
pie of pizza on my own.
SPEAKER_03 (38:24):
But it's one of those like if I'm not feeling
well, if I'm not feeling well, Iwill eat pizza.
SPEAKER_00 (38:29):
So that's but that works for you.
SPEAKER_03 (38:31):
Yeah, that yeah.
So just saying, you know.
SPEAKER_02 (38:35):
So you don't you don't chase it with beer.
I don't chase maybe that helps.
SPEAKER_03 (38:38):
I don't, I don't chase it with beer.
This is true.
I don't do that.
SPEAKER_02 (38:42):
Probably entirely IBD un unrelated, but I'm why
boxing of all sports, Christ,it's so brutal.
How did you get started withthis?
SPEAKER_00 (38:54):
Yeah, there's there's a couple answers to
that.
One of them is cultural, likeboxing is, and I'm Mexican and
Puerto Rican.
My mother's a Mexican fromMexico, my father's from Puerto
Rico.
Those are two countries whereboxing is just like a thing.
I remember that my grandparentswatching the old, you know, Dito
Trinidad, Oscar de Oya, youknow, Vodgas, like all of these,
(39:16):
but like whenever there was afight on it's it was that in
baseball, right?
Like that was like always on theTV.
And growing up, again, like Iwas I was rough around the
edges.
I would, you know, never, I wasnever the bully, but if I was
bullied, the bully was gonnahave a problem.
So I always had those issues.
So at some point I was I was inmiddle school, and at that
(39:37):
point, my my mom was just like,or my grandparents rather, were
like, we gotta do something.
And my mom was just like, Oh,let's let's put him in, you
know.
He likes these, he likes youknow, Dragon Ball Z and
superheroes and stuff.
Let's see if he wants to do, youknow, martial arts.
So she put me into TigerSchulman's, you know, mixed
martial arts, you know, as akid, and I loved it.
(39:57):
And it was me and this otherkid, we didn't belong in the
kids' class, I'll just put itthat way, to the point where
they had a training with theadults.
It was me and another kid myage.
So we would always spar eachother, but we were in the
adults' class.
So I did that for a while and Iloved it.
But then, you know, school timeand frankly being that young,
the attention pan is short.
Like I kind of got bored withit.
And then in high school, Iremember just like wanting to do
(40:22):
something again.
And there was a reality boxingshow at the time called The
Contender.
And I remember watching thatwith my mom, and she was just
like, Do you want to try likeboxing?
Because I had done the mixedmartial arts when I was like a
kid.
So I was just like, Yeah.
So we looked up.
There's this really, reallyworld-renowned gym in Brooklyn
called Gleason's Gym.
So we went over there, I didlike a trial, and the trainer
(40:43):
was just like, You sure younever did this before?
I was like, nah, but I did thisother thing.
So he was just, he went, Iremember he went to my mom, he's
like, Your son is really good.
Like, if he wants, like, I'lltrain him.
So I was just like, Yeah.
So we started, I started goingon the weekend, the weekend
turned into three days a week,three days a week turned into
six days a week.
It was just like I went to Iwent to high school, I did my
classes, and I was in the gym.
And I just loved it.
(41:03):
I loved the sparring, I love thetraining, I love the discipline
of it that definitely kept me onthe straight and arrow, like
that kept me off the streets andinto other issues that I've seen
my peers get into growing up inthat neighborhood and that
environment.
So having that and also atrainer that was just like, if I
ever see you on the street doingsome things, I'm not gonna allow
you back in this gym.
Like it was it was that kind ofdiscipline.
(41:26):
And yeah, I loved it and I wasgood at it.
Like that's one of those sportswhere you can't suck and like it
because you're not gonna have agood time.
No, you're gonna get knockedout.
That's right.
But yeah, it was it was just itwas a real passion of mine, and
it's something I always I'llalways miss.
Like that'll just be somethingbecause when I was getting ready
for the golden gloves, it waslike brutal sparring sessions.
(41:48):
Like we would we would call itthe gauntlet where one one
person would go do five roundsstraight, then swap out, but
like it was a different personeach round, and then the other
person would get in the ring,stay in there for five rounds,
then go, go, go.
And it it was to the point wheremy trainer was just like, you
know, I know you're going toschool, I support that.
But if you do well in the GoldenGloves tournament, which they
(42:09):
were anticipating I would, justbased on how I was doing the
sparring sessions and thetraining, they're like, you
know, you you may want to gopro, but if you do that, that
needs to be like all of it.
Because that is a sport where onany given day, you could be
severely injured.
But yeah, but IBD happened andlife had other plans and put me
on a different path, which I'mvery, again, very grateful for
(42:30):
because I can't imagine myselfdoing anything else.
Like, I think about the financething, and I did do like an
internship with a reallywell-known financial
institution.
I'm like, this ain't it, this isnot for me.
But yeah, so that's that's whyboxing if that answered the
question.
SPEAKER_02 (42:45):
It did for sure.
Well, and I I don't know that Icould see you as a finance bro,
to be honest.
But yeah, maybe, maybe I don'tknow.
Now that you are in a placewhere you're feeling better,
would you want to go revisit, oris it do you feel like that sort
of ship has sailed?
SPEAKER_00 (43:00):
No, I have too much respect for the sport.
Being in a gym where, you know,there were teenagers my age
doing it, that it was just likethis was their chance.
Like they were doing thisbecause this was the only way
they were gonna make a betterlife for themselves.
Growing in a gym where therewere professional fighters
training there, like I know thework and the the time, the
(43:21):
blood, the sweat, the tears, andlike all of that that goes into
that sport.
I have too much respect to go toa gym and take up space.
There was a time where I kind ofdid a tour of boxing gyms in the
city because I know they likelike these like trendier ones,
which was cool.
And I did find one that was morelike family friendly.
Like it was a real boxing gym,but it wasn't as hardcore as the
one I trained at.
(43:42):
It was very, you know, you sawdads with their sons there, like
it was very family-oriented.
So there was a period where Iwould go there like Saturdays
with my own gloves and wrapsbecause I knew how to prepare
and like do everything myself.
And I would just, you know, goand pay the day pass and you
know, do my own round with theheavy bag and different
equipment and stuff.
And to this day, when I can,like I'll still incorporate it.
Like I have gloves and pads.
I'll have friends that, youknow, on the weekends when it's
(44:03):
nice out, we'll go to the parkand like do sessions.
So it's still very muchsomething I try to have in my
life in some capacity.
But yeah.
SPEAKER_02 (44:11):
Well, I'm sad that it didn't work out for you, but
also that the path you've chosenperhaps is a lot less dangerous.
Like you said, you know, it'sit's there's some big
consequences if you like get hitthe wrong way or if something
happened.
So I think we're grateful thatyou are on the path you're on.
I'm just sorry that that was thethe way it sort of came about
because yeah, it sounds likeyou've loved it and had a real
(44:32):
shot.
And so that's that sucks,unfortunately.
But we'll take you.
SPEAKER_00 (44:35):
Yeah, yeah, silver line, make the most of things.
SPEAKER_03 (44:38):
I can't believe that we have already been talking for
an hour.
And also, this conversation wentto so many places I didn't
expect because I thought I knew,I mean, I thought I knew you.
Not, you know, we wereacquaintances, but like I
thought I knew more of yourstory, and it was really nice to
hear that.
And also, congratulations onbeing in remission for 10 years.
Unfortunately, it is time for meto ask you our last question.
(45:01):
And that is what is the onething that you want the IBD
community to know?
SPEAKER_00 (45:05):
It's to have hope.
Just through my experiencewithin the IBD community.
I mean, I was I saw I went intosupport groups where I saw both,
right?
Like the people that had thehope and the people that just
hyper focused on their diseaseand how bad it made them feel.
And I feel like that just makesyou feel worse, right?
So a lot of it, again,accountability.
We got to take accountabilityfor ourselves, for our own
(45:26):
thoughts.
It could be a really terribleday.
You got the worst symptoms ever.
We uh trust me, I get it.
I'm a patient.
I understand.
But overall, like I think it'sreally important to have a
positive mindset and have thathope because again, like I'm
here, Robin just said it, 10years intermission with a J
pouch.
I know others that have Crohn'sdisease and are on a medical,
(45:48):
you know, medication regimen,but they're doing really well
in, you know, four or five plusyears.
I know so many people that haveIBD through being involved with
the foundation and the campcommunity and volunteers and
volunteer group.
I see a lot of people livingfull lives, you know, having
families, having careers, doingall of these things.
You never know what's going onunder the surface, right?
(46:09):
Only we know that individualjourney.
But the hope is there.
Like, you know, hold yourselfaccountable and have and have
hope and make sure you're doingwhat you need to do, whether
it's taking your medications,you know, whether it's trying to
be a little bit more active,make a little bit, you know,
some more healthier choices.
But there, there's hope to havea very fulfilling life.
(46:30):
We'll have to work a little bitharder at it, but I promise you
it's it's worth it because yeah,nothing is nothing is
guaranteed, especially with achronic illness such as this.
So just have hope and and try tobe grateful for every day and be
extra grateful for the days thatyou feel that you feel good and
as close to normal as possible.
But yeah.
SPEAKER_03 (46:49):
I think Stacey and I have said that on the show too.
You know, the days that you feelreally good, like take advantage
of them, be extra grateful forthose days because you know,
live as a normal life aspossible, have a great life.
We'll just be a little bit moretired while we're doing it.
We'll just be doing it tired.
SPEAKER_00 (47:06):
And there's a whole community out there for you to
find too.
Like, I feel like that's onelast thing I if I could add is
you're definitely not alone.
It could feel isolating.
But for me, camp was was such aturning point in my life as a
whole.
Because it was just like, oh, Igot to see other counselors that
are my age, young, and living,you know, full lives, and even
(47:27):
seeing these kids.
And I'm like, these kids arehaving a blast, and they're
gonna have the live the rest oftheir lives taking these
medications and doing it.
Like just seeing that couldcompletely change your
perspective on life.
So yeah, even if you feel alone,there's an entire community out
there, there's resources foryou, there's ways to connect
with others that can relate towhat you're going through.
So, yeah, have hope and andyou're and you're not alone.
SPEAKER_02 (47:48):
Okay, thank you so much.
I was just saying how great itwas to get to know you in a
different way.
Like, you know, we've known youprofessionally, but not
necessarily gotten a chance toreally hear your full story.
So we really appreciate youcoming on and sharing it.
And we think there's a lot ofpeople that will take many, many
of your nuggets away from this.
So thank you so much for beingon the show and sharing your
story with us.
Thank you, everybody else, forlistening.
(48:09):
And cheers, guys.
But you not you, Jose, becauseyou have water.
That's right.
SPEAKER_03 (48:13):
Not you.
I did that.
SPEAKER_02 (48:16):
Oh, is it the thing, Robin?
Yes.
SPEAKER_03 (48:19):
Yes, it is, it's it hails back to sailors when
cheersing with water was liketoasting with water was
basically like saying that thesea would be their grave.
SPEAKER_04 (48:35):
Oh, I know it's that dark.
SPEAKER_02 (48:39):
Now, so this feels like this feels like a reason
for them to just get theirbosses to bring them alcohol.
So it does also, I'm guessingthere was some like motive.
SPEAKER_03 (48:47):
I think that's why all those sailors drank rum.
It's funny.
SPEAKER_02 (48:50):
I mean, listen, if I had a choice between rum and
water, I might drink rum too.
So maybe I'm a sailor.
I certainly swear like one, soit's fitting.
It's fitting.
All right.
Well, cheers, guys.
SPEAKER_00 (49:01):
Cheers.
Thank you both so, so much.
Really appreciate it.
Hi, this is Jose.
If you enjoyed this episode,please rate, review, subscribe,
and share it with your friends.
Thank you guys for listening.
Hi, I'm Alicia, and I'm a Rumbloment, and you're
listening to Mumble Moments.
SPEAKER_01 (00:04):
The podcast sharing real talk about the realities of
my TV.
This week we talked to JoseTorres.
Jose lives in New York City, hasalso done Kaleitis and a J
pouch.
We talked to him about what it'slike navigating his health care
in a big city with publictransportation and a distinct
lack of bathrooms along the way.
(00:25):
We talked to him about hisMexican and Puerto Rican
heritage and how that influencedand affected his family's
response to his disease.
We talked to him about what it'sbeen like to work for the
Crohn's and Kaleitis Foundationand how he changed his career to
better support his passion inhelping other people living with
these diseases.
And we talked to him about hisalmost career in boxing and how
(00:46):
he got involved in that.
We know you'll enjoy getting toknow Jose just as much as we
did.
Cheers.
SPEAKER_03 (00:54):
Hi, everybody.
Welcome to Battle Moments.
This is Robin.
SPEAKER_02 (00:57):
Hey everybody, this is Alicia, and we are really
excited to be joined by JoseTorres.
Jose, welcome to the show.
SPEAKER_00 (01:04):
Thank you guys so much for having me.
Really appreciate it.
SPEAKER_02 (01:06):
We have been trying to get you on for a while, so we
are excited to hear your storyand to get a chance to talk to
you.
First unprofessional questionfor you is what are you
drinking?
SPEAKER_00 (01:15):
I'm boring today and just have simple water because I
just logged off of work not toolong ago, so I haven't had time
to make myself anything else.
But I typically do put like alittle bit of lemon and honey in
my water to mix things up alittle bit.
SPEAKER_02 (01:28):
We've had a string of water lately, so that seems
to be the norm.
Which good job, guys.
Way to hydrate.
So and I'll continue to aspire.
Robin, what about you?
SPEAKER_03 (01:39):
Logan, my daughter Logan was just visiting, and she
left these protein coffees inthe fridge.
And Alicia just made the mostawful face.
And this is accurate.
It is not delicious.
But I'm gonna drink it, but itis not delicious.
And I always have water.
And now I'm wishing I had alittle lemon and honey in it
(01:59):
because of what you just said.
What are you drinking, Alicia?
SPEAKER_02 (02:02):
I'm gonna explain to everybody that you may hear some
background noise.
I happen to be in an airportlounge, and so you're gonna
maybe hear some conversations.
Apologies, but that does meanthat somebody brought me a
lovely glass of some youngwater, and so I can't fault the
fact that I get a chance todrink wine while I'm talking to
both of you, and very excited tohear how they're sorry, so I'm
gonna take cheers.
SPEAKER_00 (02:20):
It's bad luck to choose with water, so I'm gonna
exclude yourself from that.
SPEAKER_03 (02:24):
I didn't know that.
I just thought it was bad lucknot to drink if you cheers.
SPEAKER_00 (02:27):
Oh no.
I recently learned this myself.
SPEAKER_03 (02:30):
I'm gonna have to look this up and make a post of
this because we drink water.
We drink water on the show allthe time.
Like a lot of guests drinkwater.
SPEAKER_02 (02:37):
Yeah.
Oh no.
I feel I hope they're okay.
We haven't heard from them sincethen.
SPEAKER_03 (02:47):
I know.
I'm gonna fact check that.
SPEAKER_02 (02:48):
Well, fingers crossed that everybody's fine.
And so we will we will let youabstain from the tears.
Next question for you, Jose.
Please tell us your IVD story.
What brought you into ourcommunity?
SPEAKER_00 (02:57):
So I am a patient.
I have ulcerative colitis, butthe journey there was was quite
long.
I actually first started havingsymptoms um when I was around 18
years old, freshman in college,an athlete at the time.
I was training uh as a boxer,getting ready for the Golden
Gloves tournament, which forthose of you who don't know is a
really big amateur um boxingtournament here in New York
(03:20):
City.
So the plan was I had alreadybeen practicing and training for
a long time, but I was going tostart training to compete.
And out of nowhere, you know,symptoms started.
It started with a little bit ofblood in the stool, which I just
thought was nothing and would goaway.
And over months it evolved intodebilitating cramps and pain to
the point where I couldn't trainanymore.
(03:41):
I was too exhausted and tootired.
And it was even difficult to getout of bed and go to school.
I was also working part-timeretail job.
So my day pretty much lookedlike waking up early, going to
class, going to train, and thengoing to work until 12, 1 a.m.
going home and doing it all overagain.
So eventually that took a toll.
And I just didn't say anything.
(04:02):
And I think that's also verycultural, just coming up in a
Latino household.
We don't tend to say when we'refeeling things, unless it's
literally time to go to the ER.
But, you know, I was living withmy mom at the time and she kind
of noticed that wasn't my usualenergetic self.
Obviously, she knew I droppedoff with the boxing training,
not going as often.
So it was one day I literallycouldn't get out of bed.
(04:24):
So she was like, No, we need toget you checked at this point.
So we went to local hospital inBrooklyn.
They ran multiple tests, told meto keep a food diary, which even
at that time, because I was justvery health conscious being an
athlete already, made zero sensefor a doctor to tell me, well,
write it down.
If you end up back here, don'tneed it again.
(04:45):
Cool, but how am I gonna knowexactly what landed me here in
the first place?
So we just really weren'tsatisfied with the care.
Uh I was initially diagnosedwith Crohn's disease and nothing
was really changing.
I was in and out of thehospital, started doing my own
research on things, really foundthe role nutrition could and
should potentially play at thetime.
Remember, this was years ago,probably 16, 17 years ago at
(05:06):
this time.
So the level of education andknowledge, particularly around
diet nutrition, just wasn'tthere in diabetes space at the
time.
So eventually we found aspecialist in Manhattan that we
went to, which again, New YorkCity, public transportation,
flaring, you know, you guyscould fill in the blanks because
taking a cab round trip wouldhave been$200 every time we had
to go to the, you know, hospitalor to just see my GI in
(05:27):
Manhattan.
Just didn't have those resourcesto do that.
But we found a great doctor whoredid the test and properly
diagnosed me with ulcerativecolitis.
With that, was put on a regimenof medications, remission for a
year.
And after that year, I had aflare that didn't go away.
It got so severe, I had a dropout of college at the time.
(05:48):
So I had to take that semesteroff because of that.
At that point, the boxing wasjust completely done.
And yeah, I dropped down toaround 100 pounds.
I had a uh what's it called, thepick line for nutrition.
The only biologics on the marketat the time were Humera and
Remicaid.
And I believe only Remicaid wascleared for use in ulcerative
colitis.
(06:09):
So I pretty much had a decisionto make whether it was like
surgery or we try this lastmedication.
And, you know, being that young,I wasn't trying to jump to
getting an entire organ removedbecause the surgery would have
been, you know, a fullcolectomy.
So we tried the Remicaid andthat didn't work.
And the surgeons wereessentially like, we need you to
hang on for like at leastanother week or so because they
didn't want to do the surgerybecause I was already in such
(06:31):
bad shape nutritionally with myweight loss and just all the
complications you could possiblyimagine.
So I had to remain in thehospital for that period of time
and they did the J Pout surgery,which I know is typically done
in two operations, but mine theyhad to spread across three over
a period of nine months becauseI was in such bad shape for that
initial one.
(06:51):
They didn't want to extend thetime of that first surgery.
So yeah, so I had that firstsurgery, full colectomy, woke up
with an ostomy bag, had thesecond surgery six months after,
and then the final surgery wasthree months after that, with
the final surgery being thereversal, which luckily I had
healed well enough for them tobe able to do the full reversal.
And since then, I've I've had aJ Pouch ever since.
(07:14):
Very fortunate to say I've beenmedication free for the last 10
years or so managing with thewith the J Pouch.
And yeah, and through thisjourney, I discovered the
Chromebookitis Foundation, whichironically was only several
blocks away from my school thatI went to at the time.
So I don't know if you guys haveever heard the stories.
I know I've worked with you bothbefore.
(07:36):
But one day when I was feelingwell enough, I kind of just went
to the foundation's office.
I quit my retail job becausewhile I was going through all
this, I was still trying to dothat, but I had to quit that.
So I just went to thefoundation, I rang the bell, and
I'll never forget it was thenational office.
Someone answered the door, and Iwas like, Hey, I'm a patient.
I found you guys, it lookedgreat.
How can I get involved?
Can I like volunteer?
(07:57):
Part-time job, internship, likewhatever.
So they were like, We don't needany help here.
But the New York chapter is twofloors down, they need help.
So I went, went down, rang thatbell, and they were like, When
when can you get started?
Because they were extremely likeshorthanded.
And that's how I started, youknow, with the foundation as
well.
Was um, you know, and then Istarted my internships there,
and the rest is you know, kindof history.
(08:18):
I know we'll get into that in alittle bit, but yeah.
So yeah, that was myintroduction to the to the IBD
community.
SPEAKER_03 (08:23):
I do remember baby Jose as an intern.
I do.
I I do that.
Yes, I do.
I do not rem know that that'show you got started with the
foundation, but I do rememberemails from Jose's intern.
Yes.
SPEAKER_02 (08:41):
I love that you just sort of walked in and they're
like, Yes, please, when can youstart?
That's that doesn't happennowadays, I would imagine,
unfortunately.
SPEAKER_00 (08:48):
I don't imagine a lot of people just straight up
go and ring the belt placeseither.
So it was just you know acombination of just luck and at
the time they needed the help.
And I wanted to take a look atthe case.
SPEAKER_02 (08:58):
It was the Kismet, is that what that's called?
I know when we were talking toTina, but there was definitely
some cultural implications forher as it related to her
treatment choices and surgeries,and and you know, how she talks
about how the family is soinvolved in any decisions and
about how you know doctorsreally need to pay attention to
that with that particular SouthAsian community.
What was that like for yourfamily?
(09:19):
What is it like for the Latinocommunity of two white girls?
And then, you know, we're gonnasay we don't know about this.
That's number one.
And then a little bit about justmanaging your JPodge, too.
Because I mean, like the way yousaid it makes it sound like
everything was just like, andthen it was done and smooth
sailing.
And I know that probably wasn'tthe way it goes, based on what I
hear Robin and Stacey talk aboutwith their J Podges.
(09:40):
So if you wouldn't mind talkingabout kind of the two pieces,
obviously those are two entirelydifferent questions.
So start with whichever oneyou'd like.
SPEAKER_00 (09:45):
Yeah, no, absolutely.
Um, the cultural question isreally important.
Thank you for even for askingthat uh deeper.
I mean, yeah, the first thingagain is it took me so long to
say I was feeling bad.
And that is very cultural of aLatino household.
And again, like we we're taughtnot to complain, you know, don't
cry, like kind of all of thosethings.
So just being that embedded inme, I was just like, oh, this is
(10:07):
a stomach bug, I'll fight itoff, you know, it'll go away.
And it got to that point where,you know, maybe had I seeked
help sooner, maybe thetrajectory would have been
different.
But that was definitely oneaspect of it.
When it did come to thetreatment, again, also, you
know, culturally, we're hesitantand very resistant to taking
strong medications.
So when I was prescribedprednisone with, you know, the
(10:30):
steroid for the first time, wehad a lot of questions there.
It was like, is this absolutelynecessary?
Is there any alternative?
Like, you know, just to makesure that was necessary and it
wasn't just one of these thingswhere a doctor is just like,
here, take this pill, make youfeel better.
Because again, that's justsomething we're very skeptical
of.
And just if we don't have totake medication, we'd rather
not.
But this was obviously not oneof those scenarios.
(10:51):
But there was a lot of questionsand hesitancy and concern around
that.
You know, my mother was readingthe all the fine print on all
the possible side effects andlike, you know, everything.
So that was that was a layer offood while I was sick was also
tricky because a lot of foodacross, you know, different
cultures and whatnot aren'tnecessarily IVD friendly per se.
(11:13):
So that was also difficult.
Uh, and we try to navigate thatagain at that time on our own,
knowing that food was importantand how to do that.
And me being the health-orientedperson I was at that time too,
just being an athlete, you know,being told you can't eat, you
know, raw fruits and vegetablesand these things that for me
were like staples, like, youknow, trying to figure that out.
(11:33):
So the the diet, the eating wasdefinitely another part.
There was quite a bit of guilttoo, mainly, I think, from my my
my mother or weighed that veryheavily because we don't know
where it came from.
So that was questioned.
It was like there was no familyhistory of this.
Why did this happen?
Is it something you know she didat a very, very difficult
(11:54):
childhood?
So looking at that, and eventhere's studies out now that
say, like, you know, earlystress could be a you know
indicator of all that stuff.
So it was just a lot of, youknow, guilt.
But she was by my side everystep of the way.
Like she would sleep on a cotnext to my hospital bed on the
nights that I was there.
You know, my my grandfather, whomy grandparents raised me for
the most part, my grandmotherwould not come to the hospital
(12:15):
because she just cannot bear tosee me in that condition.
So my but my grandfather wouldcome and take care of me and
make sure I was good, like withthe bathroom stuff.
He would come to the bathroomwith me in the hospital and, you
know, make sure I was able to doall the stuff.
You know, my aunt and littlecousins would come.
So it was very, you know, thefamily kind of rallied, you
know, behind it.
But there were a lot ofquestions, a lot of concerns, a
(12:35):
lot of what ifs, a lot of, youknow, why, how, you know, when.
But yeah, so it was it wasdifficult.
But at the same time, it was thereinforcement of the family
unit, especially with my mom.
Cause you know, growing up, mygrandparents raised me.
She was kind of present, notpresent, kind of like on and
off.
And it was, it was actually thatjourney that brought me closer
(12:56):
to my mom.
Because that was the first timewhere I was just like, all
right, like you, you are mom,like you are my mother, like
you're here in this time that Ineed you the most, and you're
you're here fighting this fightwith me.
And yeah, there was a lot of youknow things there, but it was
mainly around the medication,the food, and the just the
questioning of the medicalsystem, especially after being
not diagnosed properly and youknow, that disparity of care
(13:18):
because of where we were inBrooklyn, right?
Like that hospital was clearlynot equipped, and that's a
problem across the country wesee with a lot of chronic
diseases, where depending onwhere you live, you're not going
to receive the same quality ofcare.
So that's definitely something Ifaced, you know, just because of
the community I was grew up inand I lived in.
I didn't have readily availableaccess to the best possible
quality of care.
I had to, you know, go toanother borough to to get that,
(13:41):
to get me in in better shape.
But yeah, I mean, I'll that'syou know, cultural-wise, if
there's any other, you know,questions or anything from what
I've said, happy to dive intoanything deeper.
SPEAKER_03 (13:50):
I just wanted to reiterate, you were in Brooklyn
and you went to a hospital, andyou still I think people in
other parts of the countrythink, oh, well, he's in New
York.
Like, there's the best hospitalsin the world in New York City.
And so Yes, that is true.
And also ease of access isn'tnecessarily there, even if you
(14:10):
are in a large city.
So we understand this, like veryfamiliar with the medical
industry and how that works, butI just feel like other people
think that if it's only if I wasin this better place or this
bigger city or this whatevermight have better access, and
that's not necessarily true,even if you are in the cities.
I mean, yeah, even when I droveto Houston to get better care, I
(14:30):
still there was still leftthere, right?
SPEAKER_02 (14:33):
So I think that's an important point, Robin.
And that's you know, tohighlight that even you can be
in the one of the best citiesfor medicine ever and still it's
not accessible to you because ofsomething like public
transportation.
So yeah, and okay, I have a veryrandom, hopefully fast answered
questions of is is there arethere public toilets and like
the the train stations and thepublic, the subway stations?
SPEAKER_00 (14:54):
There's there's not.
So I was gonna that's what I wasgonna comment on Robin's comment
of people thinking you're in abig city.
Yeah, for those not in New Yorkand not familiar, New York City
is much larger than most peoplethink who haven't been there.
Like each borough alone isprobably the equivalent of a
city in any other state.
So just for context, where Ilived in Brooklyn compared to
(15:15):
the hospital that in Manhattanwhere I was getting care, that
was an hour long on the trainone way, to your point, without
access to a restroom, becausethere are no restrooms in the
subway stations.
So yeah, that was extremelydifficult.
Like honestly, if there wererestrooms in the subways, I
wouldn't touch them anyway.
SPEAKER_02 (15:33):
I mean, that's there.
I did, but yeah, my friend wentinto a public toilet in the
subway station in Beijing andshe immediately walked out and
was like, Nope, not doing that.
It just seems strange to me.
It seems like that would besomething where they would have
to have something just because,but I guess there's the yeah,
wrong lens.
Okay, and I'm gonna come back tothe question about JPouch.
Put that one back on the shelffor a second.
Yep.
Am I correct in recollectingthis that you are involved with
(15:56):
the Latino virtual supportgroup?
Or am I not remembering thatcorrectly?
SPEAKER_00 (16:00):
No, not the support group.
I am involved with our employeeresource group within the
foundation.
Okay, and I serve as you know,some a leadership role with the
with that, with like theinternal employee resource
groups and diversity, equity,inclusion efforts within the
foundation.
Cool.
SPEAKER_02 (16:16):
Okay.
Maybe talk a little bit moreabout that one as it relates to,
I mean, because there are a lotof employees at the Grunt and
Glide Foundation that either arepersonally affected themselves
and or have a family member.
So in being involved in that,what changes have you seen at
the foundation because of havingpeople really informing that
lens and helping to really shapehow the foundation should be
responding to these differentcommunities?
SPEAKER_00 (16:37):
Yeah, no, I definitely have have seen a
change in in not just sayingthis, it's it's been genuine.
I know even before 2020, therewere plans to do more in that
space.
2020 just kind of acceleratedeverything.
But yeah, I mean, even just thefact that there's really
investment from the top in theseemployee resource groups.
(16:58):
Like this is a strategic effort.
It's a priority for theorganization to make sure we
have these spaces for employeesof diverse backgrounds to feel
comfortable and heard and seen.
So, yeah, I mean, that's youknow, we hold what we call
conversation corners every monththat usually align with some
kind of uh commemoration or orcultural acknowledgement, such
(17:20):
as Black History Month or, youknow, Pride Month or Hispanic
Latino Heritage Month.
And we've gotten to a placewhere those have become very
real conversations about thosepeople's experiences within
their community.
And where we can, we tie it backto our mission and you know,
IBD, but that's not really thefocus of it.
That's like if it fits, great.
(17:40):
But the focus is really to sharereal stories, real challenges,
and celebration as well, to growthat empathy, to kind of break
down those barriers that we seein society, right?
But within the foundation, whichis a beautiful thing.
And then externally, I know thethe foundation continues to do
work and and research tounderstand the disparities of
(18:02):
care, to understand thesedifferent factors so that we
could better serve thecommunities and awareness of
familiarity is just a huge issuealone, you know, within you
know, culturally diversecommunities.
But yeah, I it's been reallynice to see it again, not being
done as a check mark like someother organizations may do and
be like, we're doing this thingjust to say we do it.
And it's very surface level.
(18:23):
The foundation is really puttingmeaning and substance behind the
work in that space, which is whyI'm a part of it, to be to be
completely honest.
Because if I felt like it was acheck mark, I wouldn't be
involved.
SPEAKER_02 (18:35):
I'd love to hear that because I think there has
just been so much morerecognition, and especially as
some other groups started toevolve that focus a little more
specifically on certain groups,it's really lovely to see the
foundation figuring out how theycan make sure that they're being
culturally sensitive andchanging.
Because, you know, as a whiteperson that worked at the
Clinton Claire Foundation, it'sgot a lot of white people.
And so I think it's reallyimportant that they're sort of
saying how do we make sure thatwe're not losing perspective and
(18:57):
that we're making sure thatwe're being responsive to the
needs of the entire IVDcommunity.
And then also, you know, maybehow can we be working with some
of these other groups that arestarting to, you know, find
their place within the communityas well.
Robin said she got an email fromBaby Intern Jose.
So how has your job evolved?
Because I came later and so Idid not know you as baby intern
(19:20):
jose.
So tell us how your job hasevolved in the foundation and
why.
Like, why did you choose to movein the way you did?
SPEAKER_00 (19:28):
So before I get into that, my educational background,
I initially started going toschool as a finance major.
After my experience, like Iwanted to be a financial
advisor.
That was kind of my thing for noother reason than the salary,
right?
It's pretty much like you go toschool, be a lawyer, be a
doctor, be a you know, WallStreet guy, like whatever.
So I was three classes away fromfinishing the degree by the time
(19:48):
I had had this IBD journey and Idid a complete 360.
My minor at the time was incorporate communications.
So I switched that to my majorand I minored in sociology.
And really, my experience withthe foundation and a sociology
professor, which I will neverforget, who like really showed
how the world worked and didlike real case studies to the
point where I remember handingmy final and I was like, you
(20:10):
probably shouldn't be teachingthis at a business school, but
thank you, because now I wantnothing to do with the business
that perpetuates all thehorrible things in the world.
But anyway, that led me to thenonprofit.
So when Baby Jose rang that belland was very graciously accepted
in the New York chapter as anintern, I started helping with
their take steps walk.
I used to go out and put flyersin any store that would take
(20:33):
them.
I would help with basic dataentry Excel sheet stuff.
That eventually turned intohelping out with, you know,
special events, again, moreorganization admin support type
work, which evolved into myfirst paid opportunity because I
was an intern so long ago,interns didn't have to be paid.
So my first paid opportunity wascamp admin, which I'm locking my
camp oasis fleece right now.
(20:55):
And I'll never forget processingthose applications and just
reading these kids' stories.
And I remember I asked the campdirector, does my job get to go
to camp?
And they were like, No one'sever asked that question before.
Let me find out.
So they were like, nottechnically, but you can go as a
volunteer.
So I was like, all right, great.
Like, where's the application?
So I actually startedvolunteering.
(21:16):
And it was up until the last twosummers were the first two
summers in the last decade thatI did not was not a volunteer of
Camp Oasis.
So that became a very just keypart of my life and my part of
the IBD community and peoplethat I've met through there.
But yeah, so that was that.
And I remember graduation timewas coming up.
I also helped the team challengeto kind of saying flyers, the
admin.
(21:36):
So pretty much any chapter eventI supported at an administrator
level.
So I really got to learn fromthe ground up how the foundation
operated.
I also interned a bit at thenational office in both the
finance and HR department.
Finance, because that was aninterest, and I was just like,
you know, figure it out.
So I used to do chapter bankreconciliations.
And then HR was just anotheropportunity where I can learn.
(21:57):
So I was, you know, just learneda little bit there.
And then I was graduatingcollege finally, and I'll never
forget, I won't name her, but ifshe hears this, she knows who
she is, was very much advocatingfor me to be hired full-time.
And there was just not aposition open.
But there's another person whois my mentor and very, very dear
friend who was the teamchallenge manager at that time
(22:19):
who had left about maybe six toeight months before I had
graduated to anotherorganization.
She actually reached out to mewith the open position at
Serious Fun Children's Networkbefore I'd even graduated.
And I will never, ever, ever beable to thank that woman enough
because she is well connected.
She has a great network.
And I always ask, why did yougive me the opportunity
(22:41):
interview for that?
Because I was just this rougharound the edges kid from
Brooklyn and you know, justlearning about all of these
things.
So that led to me going to workthere for a few years, kind of
supporting their camps, whichwas great because I loved Camp
Oasis.
So serious fun is like CampOasis all over the world.
So it was a great experience.
I learned a lot about CRMmanagement there, fundraising.
(23:03):
I did front-end fundraising.
I managed the peer-to-peer teamfor like small, you know, walks
and things like that.
And I also did a lot ofoperational, you know, CRM
finance.
It was very diverse role, whichwas great because it just added
to everything else that I hadlearned.
So I was there for a bit.
Then my mentor left to a smallerveterinary startup organization,
(23:25):
which she brought me there withher.
So that was great because I gotto learn to see like what it was
developing a developmentdepartment from the ground up
because they didn't have one.
So my mentor was recruited tolike start up their fundraising
efforts.
And she brought me on to kind ofsupport that and build out the
operational piece of it.
So with that, it was likebuilding out websites, you know,
creating policy, procedure, CRMimplementation, kind of all of
(23:48):
that.
And then it got to a point whereI kind of felt like I did all I
could do there.
And, you know, I was looking forwhat's next in my career.
So of course I circled back tothe Crumbs of Kaleitus
Foundation.
There was a position open intheir advancement department,
which works with majorindividual donors and
foundations.
Uh, so I applied, I interviewed,and I got that.
That was great.
I worked with them for aboutfour, four years, I think.
(24:10):
And then I was poached away by aglobal consulting firm, CCS.
They're a global nonprofitconsulting firm.
So I went with them because thatwas kind of like that, it was a
very difficult decision, but itwas one of those offers that
that point in my career that Icouldn't say no to.
And the foundation was superunderstanding and supportive.
So they were like, Yeah, like doyour thing.
And if you're ever willing tocome back, and there's a
(24:32):
position open, you know, wecould discuss.
So I went and I did that.
And that was that was a veryfulfilling project because it
was essentially directing afeasibility study for Texas
Children's Hospital and theirGlobal Health Initiative, which
focused on pediatric andmaternal care and programs in
Latin America and Africa.
And that project helped break myimposter syndrome because I was
in a room with experts thatwanted to value what I had to
(24:54):
say.
So that was the first time whereI was like, okay, like I belong
here, like I belong in thisspace.
It was just a great experience.
I grew so much in that year withthem.
And then a position opened upback with the foundation in 2020
with their business developmentteam.
So leadership from thefoundation reached out.
You know, I agreed, we had thatconversation, and I came back.
Ironically, the week before theworld shutdown was my first week
(25:17):
back at the foundation.
And I've been on their businessdevelopment team, you know, for
the last five years, you know,ever since.
So that's kind of like the longand short of, you know, my
career trajectory and how it'sevolved.
But it's been great.
I've been able to learn so manydifferent skills and, you know,
utilize things in differentways.
And yeah, I really, really enjoymy role now, you know,
currently.
And even that, I've been able toevolve it, you know, over the
(25:38):
last five years and continue togrow in my career.
So yeah, it's it's been it'sbeen great.
And I'm just super fortunate forthe advocates that I've had
throughout my career that havehelped mentor me and kind of
helped put me in these positionsfor me to showcase myself and
kind of get to where I'm at.
SPEAKER_02 (25:52):
Fascinating.
Robin, anything else you want totalk about here?
SPEAKER_03 (25:55):
J Pouch.
SPEAKER_00 (25:57):
Yeah.
So the the JPouch journey, itwas it was interesting,
especially when I had the ostomyfor about nine months, you know,
in between surgeries.
I remember being on the train,like covering myself, even
though the doctors were like,There's athletes that play with
this thing, like you're fine.
It's just that mental thing of Iliterally have a piece of my
organ hanging out of my body.
Oh, gotta protect it.
(26:18):
But yeah, so that that was a lotof learning how to maintain it,
how to care for it.
You know, being in college too,just the the mental aspect of
it, you know, definitely didn'tgo out with friends as often.
Just like your normal collegeexperience, that was a pretty
difficult time.
And I know it's better knownnow, but just the overlap of
mental health, you know, issuesdiagnosed or not with IBD
(26:42):
patients, I think is althoughit's more like that conversation
is being had, I still think it'sextremely understated the impact
that this disease has in variousphases of the disease, right?
Like whether you have an ostomy,whether it's a J pouch, whether
you're flaring, whether you'reon medications, like all of
these things impact patients inways where you know it
definitely does affect yourdaily life.
(27:03):
And you have to create your kindof own sense of normalcy with
that.
So that was definitely thejourney while I had the ostomy
bag for sure.
Post ostomy, I was ready to go.
I was just like, when can I workout again?
When can I?
Because I was used to being thisathlete, and again, this is
post-surgery.
I'm still 100 and somethingpounds.
Like I'm still ways away fromyou know physically where I was.
(27:25):
So they were like, no, you know,take it easy.
We'll we'll give you the clear.
I started asking a lot ofquestions around again, diet
nutrition.
And I just started puttingthings together myself.
Like it was just like, allright, I can't eat kale or
spinach, but I could juice it,right?
Like it's the roughage thatmakes it not recommended, which
I know is now a thing that isbeing spoken about.
I forgot what they're callingit, like the form change or
(27:47):
something like that.
But yeah, finding ways toincorporate those healthy habits
back because that's what made mefeel good.
Like I was always, you know, Iwas boxing and I couldn't do
that anymore.
But still, physical fitness andhealth was extremely important.
And now it's it had that addedlayer of, well, now it's super
important because I have thisdisease, right?
So when they were when they wereable to reverse it, I did pretty
(28:10):
well for a while.
I had two cases of pouch itis inthe first six months of it,
which was not fun, but at leastthere's an antibiotic for that.
So that was that was fine.
I had to go regularly for ironinfusions uh for about like the
first year after my J pouchsurgery, until again I figured
out a better diet to the pointwhere it was just like your iron
(28:31):
is kind of high.
And then I looked at everythingand I was eating, and it was
just like, you know, quinoa andbeans and these other things.
I'm like, oh yeah, the ironcontent is really high in this
stuff.
I could probably like cut backon it.
But it was great because Ididn't need the infusions
anymore.
And yeah, just finding littlethings, even like the lemon
butter, you know, with withhoney, like there's health
benefits just putting lemon inyour butter, like occasionally.
(28:52):
So there's just these thingsthat I found that that worked
for me that led to me beingmedication free.
And it was just really managingit through diet, nutrition, and
being active.
Like again, I don't think a lotof people know the effect that
exercise has on the immunesystem, right?
Like that literally strengthensyour immune system when you're
(29:12):
physically active.
And yeah, I just went on thislike nutrition binge of like
watching these documentaries ondiet and health and you know,
kind of how the body, if it's ifit has the nutrients, it's it's
biologically designed to likeheal and like protect itself and
do better.
So I just like just reallylearned all of these things and
then I I felt it working for me.
(29:34):
So I I stayed the course.
I mean, currently, luckily, theonly thing I deal with is just
frequency, which depending onwhat I eat, you know, could be,
you know, more often than not.
I don't sleep through a night,it's very, very rare.
So that that is another thingbecause typically I'll get up at
least once, you know, at nightto use the restroom.
It's most often like two orthree times.
(29:56):
So I like to just say I'm likealways tired, it's just my
normal.
So that I don't feel Tiredbecause this is just this is
just what it is for me.
But you still find the energy todo all the things that people
need to do, you know, in theirlives.
But yeah, I've just been, youknow, again, just very fortunate
and I definitely don't take forgranted because I know the
reaction you guys gave, and I'mlike, I haven't been on
(30:16):
medication for 10 years, evenwith a J pouch.
Friends through that I metthrough camp that have a J pouch
and they're still on some kindof medication or they have like
frequent pouchitis and like allthese other, all these other
things.
And yeah, I'm just grateful.
You know, my GI team is isfantastic.
I mean, I I can't complain, andI'm I'm I definitely know I'm
the exception, not the rule, butI'm grateful.
(30:37):
And if anything, it's just likeif I can do it, others can.
Like if you have a J Pouch andyou find what works for you and
and manage it right, it's justeverything is so individualized.
Like what works for me may notwork for you, which is the
difficult part, even with dietnutrition, right?
Which is why a dietitian andnutritionist is super important,
but those are very seldomcovered by insurance.
And that's a whole other accessto care thing that we can have a
(30:59):
whole nother hour-longconversation about.
But it's it's really importantpart of it.
But yeah, I mean, that's myexperience has been all things
considered really great with theJ Pouch.
And I'm super grateful that thatit was a treatment option for
me, even though in my case itwas literally emergency surgery.
It was just like, if we don't dothis, you're you're gonna die.
Like I wouldn't be here today,literally, if I, you know, the J
(31:22):
pouch wasn't an option since therummage key didn't work and I
was in such bad shape.
So I definitely don't take thatfor granted any day of the week.
SPEAKER_03 (31:31):
Okay, I am curious about the two or three times a
night because I wonder if yourdoctors have ever told you to
get pelvic floor physicaltherapy.
And the reason that I ask that Iasked this is because personally
I have found that when I'm inseasons of like going to the
bathroom a lot, like havingflavor or just had TBO when I
(31:52):
was going to the bathroom seventimes a night.
It was ridiculous gettingridiculous.
I found that like now, eventhough I'm like six months out
from antibiotics and not havingto worry about it, I'm still
going to the bathroom often.
And I almost feel like my bodygot in the habit of going to the
bathroom.
And so as soon as I finish thisnext work trip, I'm going back
to pelvic floor physical therapyto kind of help my body relearn
(32:16):
how to hold it.
So I'm very interested if thatwould help you because I feel
like you're with athlete, withworking out with all that,
there's muscle memory.
And I feel like it works in theopposite way for us going to the
bathroom so often.
Like our body is just like, wego to the bathroom this often.
That's what we do, that's how weget through the night.
(32:36):
But I'm guessing the way thatyou said that it's interesting,
no one's ever talked to youabout pelvic floor physical
therapy.
SPEAKER_00 (32:41):
No, when I brought that up, it's just like, well,
you can take a modium.
And I'm like, nah, going back tothe not taking medicine.
So yeah, but no, I'm definitelygonna look into that.
I did not know that was a thing.
SPEAKER_02 (32:52):
Yes.
So go back and find the episodewith Claire Hamnet.
Claire is the pelvic floorphysical therapist, and we
talked to her a lot aboutworking with men and physic and
pelvic floor physical therapy.
And you might take somethingfrom it because I yeah, Rob,
what Robin is talking aboutmight it's sort of resonates
with me as a non-medicalprovider.
SPEAKER_03 (33:13):
No scientific background except for that.
We've interviewed pelvic floorphysical therapists, and I have
gotten pelvic floor physicaltherapy myself because of my
details, right?
Because of the surgeries thatI've had.
When you have surgery like wehave in the pelvic area, it's
gonna affect those muscles.
I mean, when you're working onyour exercise and you're
building up your core, that itdoesn't necessarily always get
deep enough to do your pelvicfloor.
(33:36):
So it might help you.
You might get down to one time anight.
And then the other question in acompletely different direction
about the JPEG is 10 years.
Have you gotten to a point whereyou're like, okay, this is it
now?
Like I'm in remission.
Or I don't know, for myself, Ifeel like I haven't had a really
(33:57):
long remission for 25 years.
And so, like, even now, someoneasked me yesterday, how are you
feeling?
And I'm like, I'm feeling good.
I don't even want to say I'mfeeling great because like if I
say that, then when's the nextactive disease gonna come?
When am I gonna get intestinalbacterial overgrowth again,
(34:19):
which is gonna make me think I'min a flair, but it's you know,
it's not actually disease or so.
I just I guess I'm looking for alittle bit of hope.
Have you gotten to the pointwhere you can say, like, I feel
good, I've been in remission for10 years and not have that
little like devil on yourshoulder saying, uh-uh-uh, if
that makes sense.
SPEAKER_00 (34:37):
Yeah, 100%.
Yes, but I will never use theword great, right?
Like for me to say I feel great,like things need to be
exceptionally, likeastronomically in a whole nother
stratosphere of like of good,right?
So the highest I'll ever go islike I I do feel good, but I
always follow that with I'mgrateful for it, because I know
(34:58):
it's not everyone's I dohonestly believe this was long
term.
And honestly, even when I wasgoing through the diagnosis and
the surgeries or whatever, mymom would always be like, even
to this day, she's like, Are yousure you can do that?
You're sick, like da-da-da.
Like, you know, I see her once aweek, we have dinner.
She's like, Are you sure you caneat corn?
I'm like, I'm I'm good.
(35:19):
But you know, to that end, evenwhen I was going through that,
in my head, I kept tellingmyself, I am not sick, right?
Because I couldn't allow myself,and it was definitely a defense
mechanism, but I couldn't allowmyself to even admit that to
myself at that time because Ifelt like that would have
brought me down and I wouldn'thave had hope like going through
all that.
So similarly, like in this, inthis sense, there 100% is is
(35:43):
hope.
And I I strongly believe that itthe tricky part is the person
finding what gets them there.
Right.
That's that's the difficultpart, but it's it's possible.
But yeah, I always say, yeah,good.
I do believe this is a long-termthing as long as I do my part,
which is another thing.
Like patients definitely need tohold themselves accountable.
I know that's really hard,especially like telling someone
(36:04):
with a chronic disease, like,hold yourself accountable for
your actions too.
Because I have friends thatagain camp, there's an ongoing
camp chat, and it's almost likea medical advisory board if you
look at it, because it's like,hey, I have this thing, anybody
else, da-da-da.
And it's just like, bro, youwere just posting that you was
having pizza and beer allweekend and now you're feeling
sick.
Like, would yeah, you're gonnafeel sick.
(36:24):
You know what I mean?
So it's holding yourselfaccountable, making the healthy
lifestyle choices that work foryou that help you feel good and
being consistent with it.
Um, but yeah, again, I do sayit, but I always say it with
gratitude because to your point,Robin, like I don't know if next
week I'll have pouchitis orflare up or at some point have
to have an ostomy permanently,because that's also a very real
(36:46):
reality for JPouch patients,right?
You know, I get thosescreenings, but you know, those
for you who don't know, theJPouch is a full colectomy, but
they do purposely leave aboutone to two centimeters of the
colon still there for them tomake that connection.
There's still a chance of coloncancer with that, which is part
of the pouchoscopy screening.
So I don't think about thesethings, but in the back of my
mind, it's just like I'vealready experienced what it was
(37:09):
just like to literally almostnot be here.
So the fact that I am here andI'm doing well, it's that helps
me keep myself accountable to dothe things that I know I need to
do to keep myself healthy andgood, but it also helps me, you
know, have this attitude ofgratitude every day.
Because to your point, Robin,while I do feel good and I do
feel like this is long term, youreally don't know.
(37:31):
So yeah, just gotta make themost of it when you are feeling
good.
And hopefully that creates adomino effect.
SPEAKER_03 (37:37):
I do agree with you because I feel like for the
longest time, even whensomething was wrong, no one
would have ever known it.
And it's not because I washiding, it was for my own
personal, like this is how I'mgonna get through the day.
Like, yes, I have this, but I'mstill gonna conduct my life like
nothing is wrong.
Right.
And so even like with this show,sometimes I have to say, okay, I
(37:57):
can't share my stuff anymorebecause it's starting to mess
here.
Like, I need to keep thispositive outlook, I need to be
hopeful, I need to look on thebright side, see the silver
line.
Like any cliche that you canthink of, like I had to be
positive and do what I could doto keep going and never say I'm
great too.
That's that that stood up withme.
And also don't disparage pizza.
(38:17):
That's one of my safe foods.
SPEAKER_00 (38:19):
Listen, when I'm feeling it, I can kill a whole
pie of pizza on my own.
SPEAKER_03 (38:24):
But it's one of those like if I'm not feeling
well, if I'm not feeling well, Iwill eat pizza.
SPEAKER_00 (38:29):
So that's but that works for you.
SPEAKER_03 (38:31):
Yeah, that yeah.
So just saying, you know.
SPEAKER_02 (38:35):
So you don't you don't chase it with beer.
I don't chase maybe that helps.
SPEAKER_03 (38:38):
I don't, I don't chase it with beer.
This is true.
I don't do that.
SPEAKER_02 (38:42):
Probably entirely IBD un unrelated, but I'm why
boxing of all sports, Christ,it's so brutal.
How did you get started withthis?
SPEAKER_00 (38:54):
Yeah, there's there's a couple answers to
that.
One of them is cultural, likeboxing is, and I'm Mexican and
Puerto Rican.
My mother's a Mexican fromMexico, my father's from Puerto
Rico.
Those are two countries whereboxing is just like a thing.
I remember that my grandparentswatching the old, you know, Dito
Trinidad, Oscar de Oya, youknow, Vodgas, like all of these,
(39:16):
but like whenever there was afight on it's it was that in
baseball, right?
Like that was like always on theTV.
And growing up, again, like Iwas I was rough around the
edges.
I would, you know, never, I wasnever the bully, but if I was
bullied, the bully was gonnahave a problem.
So I always had those issues.
So at some point I was I was inmiddle school, and at that
(39:37):
point, my my mom was just like,or my grandparents rather, were
like, we gotta do something.
And my mom was just like, Oh,let's let's put him in, you
know.
He likes these, he likes youknow, Dragon Ball Z and
superheroes and stuff.
Let's see if he wants to do, youknow, martial arts.
So she put me into TigerSchulman's, you know, mixed
martial arts, you know, as akid, and I loved it.
(39:57):
And it was me and this otherkid, we didn't belong in the
kids' class, I'll just put itthat way, to the point where
they had a training with theadults.
It was me and another kid myage.
So we would always spar eachother, but we were in the
adults' class.
So I did that for a while and Iloved it.
But then, you know, school timeand frankly being that young,
the attention pan is short.
Like I kind of got bored withit.
And then in high school, Iremember just like wanting to do
(40:22):
something again.
And there was a reality boxingshow at the time called The
Contender.
And I remember watching thatwith my mom, and she was just
like, Do you want to try likeboxing?
Because I had done the mixedmartial arts when I was like a
kid.
So I was just like, Yeah.
So we looked up.
There's this really, reallyworld-renowned gym in Brooklyn
called Gleason's Gym.
So we went over there, I didlike a trial, and the trainer
(40:43):
was just like, You sure younever did this before?
I was like, nah, but I did thisother thing.
So he was just, he went, Iremember he went to my mom, he's
like, Your son is really good.
Like, if he wants, like, I'lltrain him.
So I was just like, Yeah.
So we started, I started goingon the weekend, the weekend
turned into three days a week,three days a week turned into
six days a week.
It was just like I went to Iwent to high school, I did my
classes, and I was in the gym.
And I just loved it.
(41:03):
I loved the sparring, I love thetraining, I love the discipline
of it that definitely kept me onthe straight and arrow, like
that kept me off the streets andinto other issues that I've seen
my peers get into growing up inthat neighborhood and that
environment.
So having that and also atrainer that was just like, if I
ever see you on the street doingsome things, I'm not gonna allow
you back in this gym.
Like it was it was that kind ofdiscipline.
(41:26):
And yeah, I loved it and I wasgood at it.
Like that's one of those sportswhere you can't suck and like it
because you're not gonna have agood time.
No, you're gonna get knockedout.
That's right.
But yeah, it was it was just itwas a real passion of mine, and
it's something I always I'llalways miss.
Like that'll just be somethingbecause when I was getting ready
for the golden gloves, it waslike brutal sparring sessions.
(41:48):
Like we would we would call itthe gauntlet where one one
person would go do five roundsstraight, then swap out, but
like it was a different personeach round, and then the other
person would get in the ring,stay in there for five rounds,
then go, go, go.
And it it was to the point wheremy trainer was just like, you
know, I know you're going toschool, I support that.
But if you do well in the GoldenGloves tournament, which they
(42:09):
were anticipating I would, justbased on how I was doing the
sparring sessions and thetraining, they're like, you
know, you you may want to gopro, but if you do that, that
needs to be like all of it.
Because that is a sport where onany given day, you could be
severely injured.
But yeah, but IBD happened andlife had other plans and put me
on a different path, which I'mvery, again, very grateful for
(42:30):
because I can't imagine myselfdoing anything else.
Like, I think about the financething, and I did do like an
internship with a reallywell-known financial
institution.
I'm like, this ain't it, this isnot for me.
But yeah, so that's that's whyboxing if that answered the
question.
SPEAKER_02 (42:45):
It did for sure.
Well, and I I don't know that Icould see you as a finance bro,
to be honest.
But yeah, maybe, maybe I don'tknow.
Now that you are in a placewhere you're feeling better,
would you want to go revisit, oris it do you feel like that sort
of ship has sailed?
SPEAKER_00 (43:00):
No, I have too much respect for the sport.
Being in a gym where, you know,there were teenagers my age
doing it, that it was just likethis was their chance.
Like they were doing thisbecause this was the only way
they were gonna make a betterlife for themselves.
Growing in a gym where therewere professional fighters
training there, like I know thework and the the time, the
(43:21):
blood, the sweat, the tears, andlike all of that that goes into
that sport.
I have too much respect to go toa gym and take up space.
There was a time where I kind ofdid a tour of boxing gyms in the
city because I know they likelike these like trendier ones,
which was cool.
And I did find one that was morelike family friendly.
Like it was a real boxing gym,but it wasn't as hardcore as the
one I trained at.
(43:42):
It was very, you know, you sawdads with their sons there, like
it was very family-oriented.
So there was a period where Iwould go there like Saturdays
with my own gloves and wrapsbecause I knew how to prepare
and like do everything myself.
And I would just, you know, goand pay the day pass and you
know, do my own round with theheavy bag and different
equipment and stuff.
And to this day, when I can,like I'll still incorporate it.
Like I have gloves and pads.
I'll have friends that, youknow, on the weekends when it's
(44:03):
nice out, we'll go to the parkand like do sessions.
So it's still very muchsomething I try to have in my
life in some capacity.
But yeah.
SPEAKER_02 (44:11):
Well, I'm sad that it didn't work out for you, but
also that the path you've chosenperhaps is a lot less dangerous.
Like you said, you know, it'sit's there's some big
consequences if you like get hitthe wrong way or if something
happened.
So I think we're grateful thatyou are on the path you're on.
I'm just sorry that that was thethe way it sort of came about
because yeah, it sounds likeyou've loved it and had a real
(44:32):
shot.
And so that's that sucks,unfortunately.
But we'll take you.
SPEAKER_00 (44:35):
Yeah, yeah, silver line, make the most of things.
SPEAKER_03 (44:38):
I can't believe that we have already been talking for
an hour.
And also, this conversation wentto so many places I didn't
expect because I thought I knew,I mean, I thought I knew you.
Not, you know, we wereacquaintances, but like I
thought I knew more of yourstory, and it was really nice to
hear that.
And also, congratulations onbeing in remission for 10 years.
Unfortunately, it is time for meto ask you our last question.
(45:01):
And that is what is the onething that you want the IBD
community to know?
SPEAKER_00 (45:05):
It's to have hope.
Just through my experiencewithin the IBD community.
I mean, I was I saw I went intosupport groups where I saw both,
right?
Like the people that had thehope and the people that just
hyper focused on their diseaseand how bad it made them feel.
And I feel like that just makesyou feel worse, right?
So a lot of it, again,accountability.
We got to take accountabilityfor ourselves, for our own
(45:26):
thoughts.
It could be a really terribleday.
You got the worst symptoms ever.
We uh trust me, I get it.
I'm a patient.
I understand.
But overall, like I think it'sreally important to have a
positive mindset and have thathope because again, like I'm
here, Robin just said it, 10years intermission with a J
pouch.
I know others that have Crohn'sdisease and are on a medical,
(45:48):
you know, medication regimen,but they're doing really well
in, you know, four or five plusyears.
I know so many people that haveIBD through being involved with
the foundation and the campcommunity and volunteers and
volunteer group.
I see a lot of people livingfull lives, you know, having
families, having careers, doingall of these things.
You never know what's going onunder the surface, right?
(46:09):
Only we know that individualjourney.
But the hope is there.
Like, you know, hold yourselfaccountable and have and have
hope and make sure you're doingwhat you need to do, whether
it's taking your medications,you know, whether it's trying to
be a little bit more active,make a little bit, you know,
some more healthier choices.
But there, there's hope to havea very fulfilling life.
(46:30):
We'll have to work a little bitharder at it, but I promise you
it's it's worth it because yeah,nothing is nothing is
guaranteed, especially with achronic illness such as this.
So just have hope and and try tobe grateful for every day and be
extra grateful for the days thatyou feel that you feel good and
as close to normal as possible.
But yeah.
SPEAKER_03 (46:49):
I think Stacey and I have said that on the show too.
You know, the days that you feelreally good, like take advantage
of them, be extra grateful forthose days because you know,
live as a normal life aspossible, have a great life.
We'll just be a little bit moretired while we're doing it.
We'll just be doing it tired.
SPEAKER_00 (47:06):
And there's a whole community out there for you to
find too.
Like, I feel like that's onelast thing I if I could add is
you're definitely not alone.
It could feel isolating.
But for me, camp was was such aturning point in my life as a
whole.
Because it was just like, oh, Igot to see other counselors that
are my age, young, and living,you know, full lives, and even
(47:27):
seeing these kids.
And I'm like, these kids arehaving a blast, and they're
gonna have the live the rest oftheir lives taking these
medications and doing it.
Like just seeing that couldcompletely change your
perspective on life.
So yeah, even if you feel alone,there's an entire community out
there, there's resources foryou, there's ways to connect
with others that can relate towhat you're going through.
So, yeah, have hope and andyou're and you're not alone.
SPEAKER_02 (47:48):
Okay, thank you so much.
I was just saying how great itwas to get to know you in a
different way.
Like, you know, we've known youprofessionally, but not
necessarily gotten a chance toreally hear your full story.
So we really appreciate youcoming on and sharing it.
And we think there's a lot ofpeople that will take many, many
of your nuggets away from this.
So thank you so much for beingon the show and sharing your
story with us.
Thank you, everybody else, forlistening.
(48:09):
And cheers, guys.
But you not you, Jose, becauseyou have water.
That's right.
SPEAKER_03 (48:13):
Not you.
I did that.
SPEAKER_02 (48:16):
Oh, is it the thing, Robin?
Yes.
SPEAKER_03 (48:19):
Yes, it is, it's it hails back to sailors when
cheersing with water was liketoasting with water was
basically like saying that thesea would be their grave.
SPEAKER_04 (48:35):
Oh, I know it's that dark.
SPEAKER_02 (48:39):
Now, so this feels like this feels like a reason
for them to just get theirbosses to bring them alcohol.
So it does also, I'm guessingthere was some like motive.
SPEAKER_03 (48:47):
I think that's why all those sailors drank rum.
It's funny.
SPEAKER_02 (48:50):
I mean, listen, if I had a choice between rum and
water, I might drink rum too.
So maybe I'm a sailor.
I certainly swear like one, soit's fitting.
It's fitting.
All right.
Well, cheers, guys.
SPEAKER_00 (49:01):
Cheers.
Thank you both so, so much.
Really appreciate it.
Hi, this is Jose.
If you enjoyed this episode,please rate, review, subscribe,
and share it with your friends.
Thank you guys for listening.
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