Kristen Thomasino, the host of The Social Good Magazine Show, interviews Kristal Kent, founder of Veteran Voices for Fibromyalgia, a disabled Army Veteran living with Fibromyalgia. This discussion is focused on what is being done in the United States to work with government officials, and other parties focused on reducing the suffering of others with Fibromyalgia. Civil Reform is how we can rapidly change the game for many in the United States by spreading education about what millions are experiencing. Part two is how we unify to take action to make long-term changes that help impact patient outcomes rapidly. Kristal Kent is an example of a citizen utilizing the process and her community to make a difference for others with Fibromyalgia.
Kristal identified the lack of support, healthcare options & education for those living with Fibromyalgia, especially Veterans. To address the gap in healthcare and community support, Kristal founded the initiatives "The Fibromyalgia Pain Chronicles" & "Veteran Voices For Fibromyalgia," to address the inequities in healthcare, Kristal engages in VA Policy, Legislative & Systems Advocacy.
Her advocacy efforts in 2022 helped secure a statewide proclamation recognizing Fibromyalgia in the state of Ohio, signed by Governor Mike DeWine.
Learn more about Kristal's team at Veteran Voices for Fibromyalgia. https://www.veteranvoicesforfibromyalgia.com/
The Social Good Magazine Show is brought to you by Thomasino Media LLC with content produced by show host Kristen Thomasino.
Buy on Amazon "The Social Good Magazine Volume 2" to get your copy of highlights from our discussion.
At our website, www.socialgoodmagazine.com, you can read more about Kristal Kent and find links to her contact information. https://socialgoodmagazine.com/kristal-kent-1
*The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition.
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Episode Transcript
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(00:00):
The social good magazine show is produced by Thomasino Media LLC and
hosted by Kristen Thomasino.
The social good magazine show is a beacon of hope for global communities,
filled with inspiring stories that illuminate pathways to success.
By sharing transformational concepts and taking action oriented steps
towards progress, we can collaborate on reducing, suffering together and
(00:21):
enjoying the journey along the way.
So let's use this magazine and show as our road map, an opportunity to guide
each other in our government.
A researcher advanced eating.
So, hey, crystal how's it going's
going.
It's Friday and clean on your rail
in bytway,
(00:41):
I'm out here in Los Angeles, and it's been super cold, lots of rain.
But I like the terrain.
I think it's
a blessing,
especially when you're in an area that's been in a drought.
It sounds like the weather's been pretty wild.
Previous in the Ohio area,
how you do it to day?
(01:01):
Well, the weather's always wilding in Ohio.
We, oh, hay.
Ones always say, just wait, the weather will change.
It'll be different in an hour to morrow.
So we went from seventy degrees to about thirty degrees with snow flurries
this morning.
and, as you would know, a swift change in weather can impact your body.
(01:21):
I'm, I'm fine.
But it's just one of those things I anticipated that I might feel a little
bit more achy and fatigued today, because the leather changes so quickly
here.
But
it is what it is.
I'm used to it, and I know what to expect.
So this is important talks,
is talking about different advocacy efforts,
(01:42):
different topics that affect lots of people.
And one of those topics is fibronyalgia.
And crystal and I are both advocates for this, because we both experience it
and have been formerly diagnosed with it.
And one of the ways that I actually met crystal was doing fibromyalgia
advocacy in 2022.
(02:05):
And I also was doing lots of different research on various organizations that
are just focused on providing
support and solutions and ideas of ways to think about tackling chronic illness
in a positive way.
And I came across crystal Kent, and she is just
(02:28):
a fireball.
She is such an amazing person
from what she's accomplished in her life.
And also just how she continues to give,
even after she's had some unexpected events in her life as it relates to her
health.
And one of the things that I find just phenomenal about her story, and why I
(02:50):
love to engage,
is she finds ways to share
nuggets,
nuggets of wisdom about the experiences that she has.
So that
when we look at the process
of how we administer care, and how also patients look at their own
(03:10):
health, case
she's writing some really great insights that are a phenomenal
guide, I would say, in some instances, for people to consider
when they're going through their journey.
So, crystal, thank you for joining me.
I know that the weather's been up and down, and so that does affect those
(03:30):
fiber warriors at times.
And that is a great point to bring it up.
If there were a lot of victories that happened in 2022
for this cause of wellness, and thinking about how we unify our resources
to better serve our patient population,
(03:52):
you were involved in a number
of strategic initiatives,
which I just
applaud you.
I'm still learning from you.
I appreciate our time on the show as well as in the magazine, with you just
being a leader,
sharing the thoughts about
these are some of the things that we should really be thinking about.
(04:15):
So crystal,
can you tell me a little bit about some of these victories that happen in 2022?
Well,
I am very humbled that you say victories, especially because it really
is a community effort of a variety of individuals who have made these
(04:35):
victories successful.
So I can't take the full credit, but
some great things was, first,
I was able with team members of veteran voices for five or milsha
put out a series of informational educational videos,
(04:57):
hashtag team fibral reloaded, which are
all accessible for free on social media, on YouTube.
And
it was just a wonderful,
just amazing projects to bring on
licensed medical doctors,
(05:19):
health and wellness coaches, certified functional medicine
coach specialists, and along with promote voices in other communities
outside of veteran
and fibromyalgia communities, where they shared their aspects, like
dynamics of having
particular chronic illnesses, such as lupis and five or Miles that has a long
(05:42):
family lineage.
And why this kind of ties into why we need more specific German research for babromyalgia.
So
yeah, that project,
it is a victory.
But it did not come to fruition without so many people coming together and
freely and voluntarily
(06:02):
giving their time to participate and be interviewed.
So for me,
there's lots of things I love.
But that was kind of like my baby, my pet project, in a sense, because I just
felt it was so important to bring so many voices together,
along with license medical professionals, just to shell,
(06:23):
like the chronic pain community, the five America community, and veteran
community like there are people investing that want to support us.
And so
that was, my project,
is an amazing project in
creating content
that is self service,
247,
(06:45):
available on the web,
anywhere in the world, as long as they can access
those yuroels.
And this is important.
A lot of people talk about
wanting to have the knowledge of times, or suffering,
and not knowing where to go.
And it sounds like you've made a remarkable team effort
(07:07):
of unifying information
resources
so that people know that others are experiencing it.
It is real.
But great news.
You're not alone.
There are others out there that are unifying and finding some solutions
that can help them
with their suffering.
(07:30):
sometimes it's not
always going to be that everybody takes away all the pain, because that's just
not always what can happen
with some conditions of what's happened with people.
But what I love, what crystal is highlighted and done here with this
team, is saying, look, we're going to make sure
that this information
(07:51):
and people are available
so that you can get in contact.
That's fantastic.
So,
way to go.
Team fibro reloaded.
And let's talk about this.
You mentioned
how
there's some legislative
work and other advocacy work, and I was a little bit of part of some of that
(08:13):
last year helping out.
But you guys were really leading the forefront on this, and the charge and
the organization
on these ideas, about how we can change the game for the American population.
This is a fibromyalgia
is a global condition.
We've seen it in other countries, right?
(08:36):
Is that correct?
Yes, I know.
So,
you know, a lot of stuff here will be talking while it's patron algack
related, kind of more specific to veterans.
But just this sidebar, I had my other kind of awareness initiative, the fiber
Miles of pain criticles.
(08:56):
And I have individuals.
I actually just went recently encountered, so
I had the individuals living with five or Miles yet, or a loved one with
someone with five Miles or a caregiver from 37 countries?
Yeah,
publish movement in countries.
(09:18):
Yes, 37.
I just had some Malta.
I was surprised.
I'm like, I've all got some warriors here and friends now from Malta in
Europe.
And that was amazing.
Really good global
too.
So you're efforts.
And what you're trying to do is really trying to have a global approach.
(09:39):
But right now we're focusing, especially like with, what's happened
with some American leadership right in our own backyard here.
And some of that's involved some pretty big asks.
You know,
again, I love the fact that you're a veteran.
I don't know if it's
(10:00):
something about how the veterans are, but you just have some kind of spark in
you and
this fire to change the game and help humanity.
So tell me about what the leadership here in America.
What are we trying to change here?
What are we trying to get done to help the community here,
(10:20):
while veteran focused?
One of the greatest things I have been able to observe and be a part of is a
lot of grassroots veterans
individually coming together to
promote awareness and work collaboratively
to get some policy changes at the va, or legislation put in place
(10:41):
to help serve support and protect our veterans.
And what's great about that, too, is that approach we're seeing in the fiber
Miles of community over the past few years, is that recognizing that we
don't have to be this big organization,
corporation or entity to
invoke change, that we can come together as a coalition
(11:05):
and bring our individual voices together like a chorus and a choir
and amplify everyone's voices.
And the other sidebar to that, that is beautiful,
is that it's also one of the most inclusive approaches for advocacy and awareness.
(11:25):
A lot of times
I see big
organizations
trying to put out information or awareness or
make some changes, but then we have these individual advocates and grassroots
advocacy initiatives who are not being included.
And so
(11:46):
that's really
not being fully diverse
and inclusive.
And when I meet by diverse and inclusive, inclusivity is not just
based on
color, age, sex, sexual learning, tank tastion
but also age groups.
(12:08):
I know personally through my initiatives, and awareness and
educational like videos and campaigns
pulling in individuals that are under the age of nineteen years old.
Because with fibromyalgia,
one to two percent of five remozza suffers or children in adolescents,
along with pulling in men and amplifying their voices.
(12:29):
And then on the flip side, in the veteran side,
we see a lot more
initiatives, awareness campaigns and legislation, advocacy, where we're
seeing the driving floors being predominantly male veterans.
Which make sense, because as far as female veterans go,
we're only 1.8
million in the big pole of the twenty
(12:52):
or so million veterans.
And then
one of the nice things with these legislative and advocacy and awareness
initiatives and collaborating with each other, is we're able to amplify,
like those
sub communities within our community, so that we're giving
fair space and time for everybody to contribute and amplify
(13:17):
their voices.
You've got neat the literacy platform between tools and access and empowerment.
Then we get to the legislative.
Last year, we're looking for
a number of fifty million dollars,
increased research spend.
(13:38):
How can that go and where are we up with that?
I do a quick cliff notes version of recapping
this so that people kind of understand
this process of why we're asking for a specific amount.
Is some advocates
identified, like in 2019,
(14:01):
that
house appropriation committees and funding
it was being speculated it was going to be cut from like,
fourteen million and twelve million.
And that puts five or Miles as the second least funded
medical condition to receive funding for research through the national
(14:21):
institute of health in the CDC.
Some really proactive advocates went to Washington d c in 2019
and then early 2020,
right before Washington d c was closed down due to
a pandemic.
And so from there,
(14:42):
I was asked if I would help
moving forward with this legislative initiative, where we're asking congress
and senators
to support us and be our voice
in the government and ask for.
We came to fifty million dollars last year.
In 2022, that's what we asked for
(15:05):
And you know what happened was, in 2021,
we saw the projection of, instead of funding being cut to twelve million for
five or Miles of research, it was projected it'd be about thirty million.
Then last year, we asked for fifty million.
And we started also advocating that we have our champions
(15:25):
help us make sure that this funding is earmarked for very specific targeted
research for fiber mile shot.
Because there is research studies out there, but we're seeing a lot of
duplication on the same research study being done over and over and over, but
none of this is targeting
the understanding of what the route causes and how the mechanisms of the
(15:47):
symptoms work in the body.
So last year
we took on a lot of meetings as a community,
meeting with our staffers for congressional leaders and senators, and
we were asking for fifty million and asking for that support for it to be
earmarch.
Now this year, personally, I'm
going to say 100 million, where I'm personally going to ask for 100 million,
(16:12):
and not we have this support in our government to ensure those funds are
being used in a proactive, concise manner,
so that we could start targeting and looking at all these other aspects
of fibromyalgia.
Because if we can do that it's going to create a pathway of a variety of different
treatment developments,
(16:33):
pharmaceutical medications, along with holistic modalities
to help individuals living with this illness.
So when you look at
some of the big pieces here in the puzzle,
a lot of fibromyalgia
patients report
sometimes or comorbidity
(16:54):
with neurological based symptoms.
I'm an example of one of those patients.
My neurologist is one who really diagnosed me, ultimately, with fibrophyalgia,
observed me, and then also later sent me to a specialist, a rheumatologist,
who also confirmed, you know, that that's also what they were observing.
(17:16):
So
one of the big changes from last year
has to do with how we
this condition,
wanted to help the audience understand a little bit more about why this is
important and what we're asking for.
So what I think of, fabric, my own jack, is there is tangible, physical
(17:40):
research evidence that there is a neurological component to this medical
condition.
So much so that we started seeing research coming out around 20122013,
like the
Massachusetts
general hospital,
which is an affiliat of Harvard medical, doing research that found that
(18:01):
people with fibromyalgia
have
small fiber neuropathy damage.
And then we saw another research study come out where people with fibromyalgia,
the retinal
nerve layer in our eyes
degenerated.
Then further research, not just in the us.
But in other countries,
(18:22):
found that
in the brain, we have some inflammation going on in particular parts of the
brain.
In all, this is very neurologically
derivative.
And then in 2015,
October, first of 2015,
the international classification of diseases and disorders
reclassified fibromiles as a neurological medical condition.
(18:45):
So that is a very broad stroke explanation.
And the problem is, under neurological conditions, there's a subcategories,
like, is that a disorder isn't a degenerative disease?
Is it an autoimmune condition?
And that's where we're at.
We know it's neurological.
We got that classification,
but now we need to advocate for our governmental officials,
(19:10):
what not, what have you, medical entities and tax driven
health institutes that are funded with taxpayer dollars to do that research,
to find out what subcategory it is.
And once we can do that, then we'll not only have better understanding,
but we can identify the appropriate medical specialty to treat people with
(19:31):
fiber Miles.
Or because what happens is
we kind of get bounced around from specialties
within the medical field from neurology, which I was seen by a
neurologist.
I was also seen by three rheumatologists, and pain management,
sometimes pain and rehabilitation medicine specialist.
And so that's kind of a disconnect.
(19:53):
These titles that you just said, these are names of roles that people hear all
over the country, but they may not understand
what the right roles are to have on a complete health team.
And sometimes you need certain roles to work together
and to communicate to one another to create treatment pasts that make sense for
(20:15):
patients.
And so I think what we're trying to do here
say, look, there's areas that
this community has identified that can really make a difference in the care,
as well as the identification
of people that suffer within this class
to get access.
(20:35):
And so the other big part of this is, again, awareness.
you've been pretty
helping, raising the flag, sharing information.
There was a huge win for you last year in the state of Ohio.
How do you tell us about the good news,
(20:58):
what you're able to work out there with the governor
last year?
So
governor Mike duein,
he issued a proclamation, declaring may twelve as by maljo awareness day in the
state of Ohio.
In Ohio is the third state
to actually issue a proclamation.
(21:22):
And
a lot of people might not understand why that's important, but what it is
it's like an official,
formal, governmental,
state level recognition that this is
a condition that needs more public awareness and support,
especially when you look at the Numbers, as far as with ohioans,
(21:44):
how many people were affected and how many veterans in Ohio.
And so having,
for lack of a better term, it's almost like a stamp of approval or stamp of
legitimacy.
And when a lot of people focus on federal level stuff, but your state
level is just as important.
Because
(22:05):
the more governors you have that recognize it,
that could help within that state open up funding, or major medical institutions
shift funds to focus on fibromyalgia.
I live outside of Cleveland Ohio, so we have
the Cleveland clinic foundation, we have university health care system, and
we have mental health, and plenty of vas.
(22:27):
And a lot of these entities do their own internal research.
So having that
declaration made formally and legally,
this also puts us on these medical institutes radar.
And they might be like, oh, we should look into this, especially because
there's just this x amount of people in Ohio that have fiber Miles
(22:48):
and veterans.
And most veterans actually receive private health care
nationally, versus going to the ba.
So that's, another thing that helps break some stereotypes,
is that
everyone believes that veterans, all veterans go to the va for health care,
and there's about twenty million of us.
And back in 2019,
(23:08):
the va, that year only served 892
million veterans.
Then they're veterans such as myself, which I call, we do hybrid health care,
where you go to the va for some things and then go to private health care for
other things.
So that is something that is a major highlight, is saying, oh,
we also have veterans, and these other groups of people that you would think
(23:30):
traditionally would be going to certain systems only for their health care, but
they're also going to private health care.
So you know, these awareness
on a local, state and federal level, helps
entities,
individual society and medical facilities
and researchers recognize that,
(23:52):
oh, ok, let's look into this.
And they shift their funding internally, and it do some research, or
maybe they hire more staff to focus on treating people with five amalgia
that's exciting what you just
said, that there's different
models that veterans are using to get access to care.
(24:15):
Some of them are a hybrid model, which this is important, because we're
talking about
supply and demand.
Let's be real,
not everywhere in this country is going to have access to resources.
If I put you in the middle of the desert, crystal,
in some remote place,
(24:36):
is it likely that we're going to have access all the time, sometimes to
specialty types of care?
And that answer typically is no.
And so what we're hearing, what I'm hearing right is that in the Cleveland
area, there are a number of options.
(24:57):
There are a number of medical groups
that are established,
doing good work already
in trying to assist people that need care.
And that, I think, is a bright spot that we should continue to highlight.
Because as we think about the new economy, and I like to talk about the
(25:18):
new economy in the social magazine, volume two, crystal Kent is in it
sharing her thoughts.
She talked about, like the access,
in the need for
there to be more staff
to help.
One of the things she just talked about was how a hybrid model has helped her,
(25:38):
in some instances,
get access
when the va didn't necessarily have what she had, possibly, right?
So I think that this is an exciting
opportunity to
create new jobs.
And for people who are looking, especially within the college industry,
(25:59):
what jobs should I get into?
High school and others,
we're talking about preventative care, as well as also
chronic illness care.
And this is kind of a new economy where when we think about, how can we do the
right things moving forward to help others
(26:19):
in these types of amazing industries,
this seems like it could be a bright spot.
And I think about
how we can make it better.
In the work that crystal Ken is doing is really saying, look,
there's some things that, if we had a little bit more
staff,
(26:40):
would improve the lives of veterans.
And I think he said, what was a 2020
million?
22 million?
Was that's the number I heard?
Yeah, there's approximately
twenty million veterans currently.
And 18 million of them are female veterans.
You bring up a very great point when you're talking about an economic model,
(27:04):
because in health care, it is now being run as a systematic
business model.
And people find that frustrating.
I said, look,
these are the cards that we're dealt let's
work smart, not hard, and actually find ways
to
let these entities know that they're missing out on a lot of
(27:27):
major money
because they're not helping patients that have harder time accessing health care.
And so let's think of this in an innovative way.
Take out the word health care.
Take out medical it's being run like a business model.
And what do businesses want to do?
They want to reach more people.
(27:47):
Reaching more people, increases revenue.
Increasing revenue though, because we have a lot of businesses from banking
to the automotive industry, to healthcare, is that when they're
increasing their revenue, believe it or not, a lot of those entities are going
to put about twenty percent and shift it to research, or shift it to help support
(28:08):
those people in our communities that are not getting the access.
how do we have that conversation?
And one of those things is we come up with ideas
of innovation and health care.
And there are so many barriers for so many groups
that need access to health care, not just veterans, not just people with
(28:29):
fiber Miles,
but a variety of medical communities.
And I've worked for organizations
in the mental health Fields,
where
we actually provided community
health supports and community mental health supports.
And we took the teams to the neighborhoods.
The communities, we had mobile vehicles that are like, they're like RVs, that
(28:51):
are tricked out to become like a nini medical satellite, where we're going out
and outreaching these individuals that have no ability to access care in a
timely manner.
So
that's one of the things when we're thinking about advocacy,
we can't just say you need to provide more support, you need to have more
(29:14):
doctors.
We need to also come to the table with ideas and suggestions.
They might not be good ones.
I've had some bad ideas, but hey, good idea.
I'm not the type of person to say, this is a problem.
Fix it.
I'm the type of person that says, this is an issue.
Here are some possible solutions from a patient perspective that would help.
My community would help meet, how are we serving
(29:37):
native americans on reservations that are veterans?
are we serving those individuals that are in rural areas?
The other thing is, urban areas.
People assume that when you live in an urban area, that you have easier
access to health care because it's a Shorter distance, but not everybody has
a car.
Many people are relying on public transportation.
They don't have day care for their kids.
(29:58):
So they've got to bring all their children with them.
Or an elderly
parent they're taking care of might have alzheimer's or chronic condition
that they need oversight.
And all these are barriers that with some proactive innovation, innovative
solutions, we might be able to remove those, and then people have more access
to health care.
(30:19):
So our health care system is based on a model system, on a 95
company
entity, and we expect patients to rearrange their entire schedule or find
ways to overcome barriers to access health care.
It really needs to be the opposite.
I understand them running out a business model, but it really needs to
(30:43):
be a human services model, and identifying those barriers, not just
talking about it, but working with the communities to alleviate those barriers
so that more people can access health care.
Can you get back into it?
An educated, you're a fiery advocate, and you want to help.
But part of this help
(31:03):
has to do with
people also taking action,
being a soldier, being a veteran.
You're born a little bit differently with this
desire to serve, desire to work on yourself, have that self accountably be
the best you can be, right?
Do these things.
And one of the things, I think in our society, because we've had so many
(31:28):
overwhelming current events at times,
that there are these groups, and they're having these different experiences,
and we're looking for leadership.
We're looking for people that are saying, hey, I'm
focused on this area.
Crystal,
you have been focused specifically on the veteran community and other
(31:51):
communities as well.
But one of the big ones, recently, that you've been involved in, is working on
a special project.
this special project
is pretty important to the veteran community.
Again, twenty million
veterans.
And I think I heard you say, 18
(32:11):
women out of this.
So
what's important in this discussion is how we look at how
let people know that there's resources out there.
And then there's this project that you've been doing to kind of
communicate, differently
in additional other content.
(32:32):
Why don't you tell me about this amazing documentary
that you've been a part of, and our health and support?
Sure.
And again, this is
a
collaboration of a variety of people.
And to highlight
the power of social media and social
(32:52):
networking platforms, is, I connected
with a retired navy veteran
who is the cofounder of a film production company called brain dagger
films and just through to chat
and saying, these are some of the things that I do.
These are some of the things we're passionate about.
(33:13):
These are some of the things that
we want to tackle.
And so that cofounder is mo Taylor of brain dagger films, who is the retired
navy veteran.
And
obviously I'm an army veteran.
So we are
very acutely aware of the needs of the veteran community, especially like dispelling
(33:37):
stigmas and stereotypes and
perceptions about invisible illnesses.
And so as we were networking on social media, we came up with this
idea of
doing a documentary that highlights
the different aspects of being a military veteran living with invisible conditions,
(34:01):
and the unique experiences
veterans experience
living with invisible medical conditions, and the added layers, or barriers,
of
getting the support that we need.
So
Mr.
Taylor and I kicked back a variety of ideas, and then he was like,
(34:23):
write up the concept.
And I was like,
for documentary
about
the basically battle
a veteran contends with after getting out of this service, having to go to
war again,
to overcome all these stereotype stigmas and lack of access for
(34:44):
healthcare for invisible medical conditions.
So I said, ok,
i'll get that to you.
I forgot what I said, but it was like literally in the week.
And then Mr.
Taylor was like, oh, this is great.
And then I said, ok, well, what do you want to focus on?
Like,
do you want this to be more informational?
I can pull in veterans who would be great for this.
And
(35:04):
he was like, go for it.
So release today
is
a documentary
with brain dagger films
about the veterans and the scourge of invisible illnesses and all how it's
kind of like we've already done our battles and served our country.
(35:27):
Now we're battling again
to get the recognition,
the understanding validation support in health care
that we need
a variety of
medical conditions that are invisible.
And so I asked
okobo, my really good friends and fellow advocates and team members,
(35:49):
if they would collaborate on this.
And the one person is Brian talley, who is
the driving force behind the legislative
bill, tally bill that was signed into law on January of 2021.
He's also now the founder of today with tally podcasts, and he's a marine veteran
that,
(36:12):
out of no faults of his own, ended up experience some pretty
extensive
medical negligence at the va and sharing his journey and all the
obstacles he overcame.
So I asked if he would participate
to share his personal experiences.
And then I also asked a new data,
(36:34):
who is a combat army veteran, and she's also part of the veteran voices for
five or Miles a team,
if she would participate.
And she did.
And just like a quick little thing there that in most, like documentaries,
or educational pieces about veterans, it's predominantly male veterans, you
see.
So I wanted to flip this script where we're interviewing three people, and I
(36:58):
was one of the three.
So in this, we had two female, that are in someone male veteran,
just to promote the importance of recognizing that female veterans
need the support and understanding as well, and our needs are
unique, but also at times different from male veterans.
And then bryance devali,
(37:18):
he narrated
some of the informational pieces in this documentaries.
So really, this is kind of like
five person team that came together
to amplify
the voices of veterans living with different
invisible
medical conditions and the barriers that we contend with.
(37:40):
And the things that, if we could
basically address and resolve, would make it better for veterans to access
health care and get the medical support and understanding we need.
Along with highlighting the importance of why we need
support systems, along with how the role of social media placed in creating
(38:02):
those support systems
for veterans living with invisible disabilities,
almost
super busy.
And
one I just applaud to.
Again, you're suffering yourself, and you find some of the space and the
taunt to give others
(38:23):
to learn.
So thank you for your leadership on these different projects.
When I think about social good, again, crystal Kent is an example of that's,
why I've included her in the social good magazine show.
And again, when you want to learn more about what she's thinking about
there's concrete solutions that we're putting together in this magazine
(38:47):
to help others in our communities,
it's really meant to have a long term picture about
what could we do to listen to some of these advocates like crystal, who are
really in the trenches.
They know a lot of the details.
What could we do differently?
And we've been through a lot in our country, but I think it's important
(39:08):
that we continue to try to be a leader
in taking care of our own people,
providing
opportunities for jobs and ways in which we can
help others reduce suffering.
And at the same time, how do we make these new paths forward?
(39:29):
So from a preventative medicine side, that people are really continuing to
keep doing well
and making progress.
And that's a big deal for some folks.
And one of the big projects that I'm working on as well for veterans,
has to do with homeless.
(39:50):
And how do we
help get people to shelter in safety?
And security is a big thing.
And here in Los Angeles, we've had a number of challenges.
We have one of the largest veteran populations in the country,
and there's things that we can be doing,
potentially differently,
as a community to support our veterans.
(40:12):
And so I think that having leaders like crystal Kent, who are really our
subject matter experts, right?
Having them on my show in these different magazines and podcasts and
these different ways that we're all communicating out, it really is purposeful,
right?
Kristal, we're trying to be purposeful in this act of social good to help others
(40:38):
purposeful intent with purposeful actions.
And I honestly applaud you
being out in the trenches yourself helping our veterans who are
experiencing homelessness.
And just a little quick tidbit is that while there's twenty million veterans
(40:59):
and they're predominantly male veterans, the interesting piece, when
you look at population ratio percentage risk, is that female veterans
and LGBTQ veterans are actually at higher risk of being homeless than
their male counterparts.
It's not to say it's not a crisis with male veterans.
again, it comes down to these systems not providing the support for everyone,
(41:25):
every sub community, within the community of veterans, and there's
other countries that have declared homelessness
as a health care crisis.
And once they did that,
it shifts funds.
So I talked about this earlier.
When certain levels of government recognize something formally and officially,
what happens is funds get shifted to address that, whether internally or
(41:46):
from a governmental perspective or federal
aspect.
And so when we do that,
some of these countries that declared
homelessness as a health care crisis.
They were able to reduce
homelessness
in general
up to seventy percent,
(42:07):
and they declared it a health care crisis, a health crisis.
And when you do these things
it's like legitimizing it it's saying,
we wear as a whole,
as a society, as a nation, as a global
citizenship.
We need to
recognize this as a crisis.
(42:28):
And once you do these things,
that's where funding and support
comes in.
The other thing is in the United States, what frustrates me is, I
haven't looked in a while, but
when we were going through the worst of the shutdowns due to a pandemic,
we had a lot of time in our hands.
(42:48):
So I started going through all of the nonprofits that were registered with
guide star, that were providing supports and services and funding for
veterans who are homeless.
And I stopped counting at 200 because I got frustrated because I said, ok.
At about 207,
I said, I'm done.
This is just in the United States, all these nonprofits, and looking at how
(43:09):
much resources and funding they had.
And I thought, you know what, if they came together nationally,
I bet you could dramatically decrease
homelessness, amongst veterans, if they came together and pulled their skill
stats, resources, funding.
there are experts in different areas
(43:29):
serving this veteran population.
So I just,
me, I get kind of nerdy like that.
And I do this research, and I'm like, hmm,
to crucial period,
to unify,
to do things differently,
to allocate resources, there's prosthes that exist.
(43:53):
And it works in some areas somewhat.
And in some areas it doesn't, because it may not be executed, right?
And so I think that what the whole point of this show is how we share best
practices, learnings, rapidly,
and get this information to the people that are operating on the ground.
Look, everybody's out there trying to help and do things the best they can.
(44:15):
But the thing that we always talk about, especially those in the
caronically ill communities,
how you use your energy, is very important.
And so as we wrap up here,
thank you, crystal, for being on and sharing your thoughts again for part two.
And this has just been enlightening to listen to the victories that you've
(44:36):
experienced with the team
and the new resources that are available.
I just see optimistic
opportunities here really for us to increase research and
can't people realizing that?
Look,
it's ok.
There's some folks that have experienced what you're experiencing.
(44:58):
You're not alone
there's resources.
You've got to do work.
You've got to do the work.
But there are things that you can connect with that can potentially help
in our communities.
take you critical for the time
again.
Check out her website.
(45:19):
We're going to have the contact information available.
And also watch the new documentary let's support.
Some veterans, these folks are getting together to share this information
because it's important to our communities.
There's twenty million plus veterans out there that I think this message
should be shared with.
So, crystal, thank you for your time.
(45:40):
Thank you for what your team does,
and thank you for your service.
Ma'am?
I personally just really appreciate you.
So thank you.
Now,
I appreciate you more for getting you to space.
What you're doing is just as integral and important as what everybody else is
doing, because together we can make a difference.
(46:00):
One voice.
Thank you.
(46:28):
The social good magazine is designed to inspire others to make a difference in
their communities.
Created by Kristen Thomasino.
This show and magazine showcases the stories of people making a positive
impact in their neighborhoods.
And beyond, whether it's through volunteering, fundraising,
The social good magazine show is produced by Thomasino Media LLC and
hosted by Kristen Thomasino.
The social good magazine show is a beacon of hope for global communities,
filled with inspiring stories that illuminate pathways to success.
By sharing transformational concepts and taking action oriented steps
towards progress, we can collaborate on reducing, suffering together and
(00:21):
enjoying the journey along the way.
So let's use this magazine and show as our road map, an opportunity to guide
each other in our government.
A researcher advanced eating.
So, hey, crystal how's it going's
going.
It's Friday and clean on your rail
in bytway,
(00:41):
I'm out here in Los Angeles, and it's been super cold, lots of rain.
But I like the terrain.
I think it's
a blessing,
especially when you're in an area that's been in a drought.
It sounds like the weather's been pretty wild.
Previous in the Ohio area,
how you do it to day?
(01:01):
Well, the weather's always wilding in Ohio.
We, oh, hay.
Ones always say, just wait, the weather will change.
It'll be different in an hour to morrow.
So we went from seventy degrees to about thirty degrees with snow flurries
this morning.
and, as you would know, a swift change in weather can impact your body.
(01:21):
I'm, I'm fine.
But it's just one of those things I anticipated that I might feel a little
bit more achy and fatigued today, because the leather changes so quickly
here.
But
it is what it is.
I'm used to it, and I know what to expect.
So this is important talks,
is talking about different advocacy efforts,
(01:42):
different topics that affect lots of people.
And one of those topics is fibronyalgia.
And crystal and I are both advocates for this, because we both experience it
and have been formerly diagnosed with it.
And one of the ways that I actually met crystal was doing fibromyalgia
advocacy in 2022.
(02:05):
And I also was doing lots of different research on various organizations that
are just focused on providing
support and solutions and ideas of ways to think about tackling chronic illness
in a positive way.
And I came across crystal Kent, and she is just
(02:28):
a fireball.
She is such an amazing person
from what she's accomplished in her life.
And also just how she continues to give,
even after she's had some unexpected events in her life as it relates to her
health.
And one of the things that I find just phenomenal about her story, and why I
(02:50):
love to engage,
is she finds ways to share
nuggets,
nuggets of wisdom about the experiences that she has.
So that
when we look at the process
of how we administer care, and how also patients look at their own
(03:10):
health, case
she's writing some really great insights that are a phenomenal
guide, I would say, in some instances, for people to consider
when they're going through their journey.
So, crystal, thank you for joining me.
I know that the weather's been up and down, and so that does affect those
(03:30):
fiber warriors at times.
And that is a great point to bring it up.
If there were a lot of victories that happened in 2022
for this cause of wellness, and thinking about how we unify our resources
to better serve our patient population,
(03:52):
you were involved in a number
of strategic initiatives,
which I just
applaud you.
I'm still learning from you.
I appreciate our time on the show as well as in the magazine, with you just
being a leader,
sharing the thoughts about
these are some of the things that we should really be thinking about.
(04:15):
So crystal,
can you tell me a little bit about some of these victories that happen in 2022?
Well,
I am very humbled that you say victories, especially because it really
is a community effort of a variety of individuals who have made these
(04:35):
victories successful.
So I can't take the full credit, but
some great things was, first,
I was able with team members of veteran voices for five or milsha
put out a series of informational educational videos,
(04:57):
hashtag team fibral reloaded, which are
all accessible for free on social media, on YouTube.
And
it was just a wonderful,
just amazing projects to bring on
licensed medical doctors,
(05:19):
health and wellness coaches, certified functional medicine
coach specialists, and along with promote voices in other communities
outside of veteran
and fibromyalgia communities, where they shared their aspects, like
dynamics of having
particular chronic illnesses, such as lupis and five or Miles that has a long
(05:42):
family lineage.
And why this kind of ties into why we need more specific German research for babromyalgia.
So
yeah, that project,
it is a victory.
But it did not come to fruition without so many people coming together and
freely and voluntarily
(06:02):
giving their time to participate and be interviewed.
So for me,
there's lots of things I love.
But that was kind of like my baby, my pet project, in a sense, because I just
felt it was so important to bring so many voices together,
along with license medical professionals, just to shell,
(06:23):
like the chronic pain community, the five America community, and veteran
community like there are people investing that want to support us.
And so
that was, my project,
is an amazing project in
creating content
that is self service,
247,
(06:45):
available on the web,
anywhere in the world, as long as they can access
those yuroels.
And this is important.
A lot of people talk about
wanting to have the knowledge of times, or suffering,
and not knowing where to go.
And it sounds like you've made a remarkable team effort
(07:07):
of unifying information
resources
so that people know that others are experiencing it.
It is real.
But great news.
You're not alone.
There are others out there that are unifying and finding some solutions
that can help them
with their suffering.
(07:30):
sometimes it's not
always going to be that everybody takes away all the pain, because that's just
not always what can happen
with some conditions of what's happened with people.
But what I love, what crystal is highlighted and done here with this
team, is saying, look, we're going to make sure
that this information
(07:51):
and people are available
so that you can get in contact.
That's fantastic.
So,
way to go.
Team fibro reloaded.
And let's talk about this.
You mentioned
how
there's some legislative
work and other advocacy work, and I was a little bit of part of some of that
(08:13):
last year helping out.
But you guys were really leading the forefront on this, and the charge and
the organization
on these ideas, about how we can change the game for the American population.
This is a fibromyalgia
is a global condition.
We've seen it in other countries, right?
(08:36):
Is that correct?
Yes, I know.
So,
you know, a lot of stuff here will be talking while it's patron algack
related, kind of more specific to veterans.
But just this sidebar, I had my other kind of awareness initiative, the fiber
Miles of pain criticles.
(08:56):
And I have individuals.
I actually just went recently encountered, so
I had the individuals living with five or Miles yet, or a loved one with
someone with five Miles or a caregiver from 37 countries?
Yeah,
publish movement in countries.
(09:18):
Yes, 37.
I just had some Malta.
I was surprised.
I'm like, I've all got some warriors here and friends now from Malta in
Europe.
And that was amazing.
Really good global
too.
So you're efforts.
And what you're trying to do is really trying to have a global approach.
(09:39):
But right now we're focusing, especially like with, what's happened
with some American leadership right in our own backyard here.
And some of that's involved some pretty big asks.
You know,
again, I love the fact that you're a veteran.
I don't know if it's
(10:00):
something about how the veterans are, but you just have some kind of spark in
you and
this fire to change the game and help humanity.
So tell me about what the leadership here in America.
What are we trying to change here?
What are we trying to get done to help the community here,
(10:20):
while veteran focused?
One of the greatest things I have been able to observe and be a part of is a
lot of grassroots veterans
individually coming together to
promote awareness and work collaboratively
to get some policy changes at the va, or legislation put in place
(10:41):
to help serve support and protect our veterans.
And what's great about that, too, is that approach we're seeing in the fiber
Miles of community over the past few years, is that recognizing that we
don't have to be this big organization,
corporation or entity to
invoke change, that we can come together as a coalition
(11:05):
and bring our individual voices together like a chorus and a choir
and amplify everyone's voices.
And the other sidebar to that, that is beautiful,
is that it's also one of the most inclusive approaches for advocacy and awareness.
(11:25):
A lot of times
I see big
organizations
trying to put out information or awareness or
make some changes, but then we have these individual advocates and grassroots
advocacy initiatives who are not being included.
And so
(11:46):
that's really
not being fully diverse
and inclusive.
And when I meet by diverse and inclusive, inclusivity is not just
based on
color, age, sex, sexual learning, tank tastion
but also age groups.
(12:08):
I know personally through my initiatives, and awareness and
educational like videos and campaigns
pulling in individuals that are under the age of nineteen years old.
Because with fibromyalgia,
one to two percent of five remozza suffers or children in adolescents,
along with pulling in men and amplifying their voices.
(12:29):
And then on the flip side, in the veteran side,
we see a lot more
initiatives, awareness campaigns and legislation, advocacy, where we're
seeing the driving floors being predominantly male veterans.
Which make sense, because as far as female veterans go,
we're only 1.8
million in the big pole of the twenty
(12:52):
or so million veterans.
And then
one of the nice things with these legislative and advocacy and awareness
initiatives and collaborating with each other, is we're able to amplify,
like those
sub communities within our community, so that we're giving
fair space and time for everybody to contribute and amplify
(13:17):
their voices.
You've got neat the literacy platform between tools and access and empowerment.
Then we get to the legislative.
Last year, we're looking for
a number of fifty million dollars,
increased research spend.
(13:38):
How can that go and where are we up with that?
I do a quick cliff notes version of recapping
this so that people kind of understand
this process of why we're asking for a specific amount.
Is some advocates
identified, like in 2019,
(14:01):
that
house appropriation committees and funding
it was being speculated it was going to be cut from like,
fourteen million and twelve million.
And that puts five or Miles as the second least funded
medical condition to receive funding for research through the national
(14:21):
institute of health in the CDC.
Some really proactive advocates went to Washington d c in 2019
and then early 2020,
right before Washington d c was closed down due to
a pandemic.
And so from there,
(14:42):
I was asked if I would help
moving forward with this legislative initiative, where we're asking congress
and senators
to support us and be our voice
in the government and ask for.
We came to fifty million dollars last year.
In 2022, that's what we asked for
(15:05):
And you know what happened was, in 2021,
we saw the projection of, instead of funding being cut to twelve million for
five or Miles of research, it was projected it'd be about thirty million.
Then last year, we asked for fifty million.
And we started also advocating that we have our champions
(15:25):
help us make sure that this funding is earmarked for very specific targeted
research for fiber mile shot.
Because there is research studies out there, but we're seeing a lot of
duplication on the same research study being done over and over and over, but
none of this is targeting
the understanding of what the route causes and how the mechanisms of the
(15:47):
symptoms work in the body.
So last year
we took on a lot of meetings as a community,
meeting with our staffers for congressional leaders and senators, and
we were asking for fifty million and asking for that support for it to be
earmarch.
Now this year, personally, I'm
going to say 100 million, where I'm personally going to ask for 100 million,
(16:12):
and not we have this support in our government to ensure those funds are
being used in a proactive, concise manner,
so that we could start targeting and looking at all these other aspects
of fibromyalgia.
Because if we can do that it's going to create a pathway of a variety of different
treatment developments,
(16:33):
pharmaceutical medications, along with holistic modalities
to help individuals living with this illness.
So when you look at
some of the big pieces here in the puzzle,
a lot of fibromyalgia
patients report
sometimes or comorbidity
(16:54):
with neurological based symptoms.
I'm an example of one of those patients.
My neurologist is one who really diagnosed me, ultimately, with fibrophyalgia,
observed me, and then also later sent me to a specialist, a rheumatologist,
who also confirmed, you know, that that's also what they were observing.
(17:16):
So
one of the big changes from last year
has to do with how we
this condition,
wanted to help the audience understand a little bit more about why this is
important and what we're asking for.
So what I think of, fabric, my own jack, is there is tangible, physical
(17:40):
research evidence that there is a neurological component to this medical
condition.
So much so that we started seeing research coming out around 20122013,
like the
Massachusetts
general hospital,
which is an affiliat of Harvard medical, doing research that found that
(18:01):
people with fibromyalgia
have
small fiber neuropathy damage.
And then we saw another research study come out where people with fibromyalgia,
the retinal
nerve layer in our eyes
degenerated.
Then further research, not just in the us.
But in other countries,
(18:22):
found that
in the brain, we have some inflammation going on in particular parts of the
brain.
In all, this is very neurologically
derivative.
And then in 2015,
October, first of 2015,
the international classification of diseases and disorders
reclassified fibromiles as a neurological medical condition.
(18:45):
So that is a very broad stroke explanation.
And the problem is, under neurological conditions, there's a subcategories,
like, is that a disorder isn't a degenerative disease?
Is it an autoimmune condition?
And that's where we're at.
We know it's neurological.
We got that classification,
but now we need to advocate for our governmental officials,
(19:10):
what not, what have you, medical entities and tax driven
health institutes that are funded with taxpayer dollars to do that research,
to find out what subcategory it is.
And once we can do that, then we'll not only have better understanding,
but we can identify the appropriate medical specialty to treat people with
(19:31):
fiber Miles.
Or because what happens is
we kind of get bounced around from specialties
within the medical field from neurology, which I was seen by a
neurologist.
I was also seen by three rheumatologists, and pain management,
sometimes pain and rehabilitation medicine specialist.
And so that's kind of a disconnect.
(19:53):
These titles that you just said, these are names of roles that people hear all
over the country, but they may not understand
what the right roles are to have on a complete health team.
And sometimes you need certain roles to work together
and to communicate to one another to create treatment pasts that make sense for
(20:15):
patients.
And so I think what we're trying to do here
say, look, there's areas that
this community has identified that can really make a difference in the care,
as well as the identification
of people that suffer within this class
to get access.
(20:35):
And so the other big part of this is, again, awareness.
you've been pretty
helping, raising the flag, sharing information.
There was a huge win for you last year in the state of Ohio.
How do you tell us about the good news,
(20:58):
what you're able to work out there with the governor
last year?
So
governor Mike duein,
he issued a proclamation, declaring may twelve as by maljo awareness day in the
state of Ohio.
In Ohio is the third state
to actually issue a proclamation.
(21:22):
And
a lot of people might not understand why that's important, but what it is
it's like an official,
formal, governmental,
state level recognition that this is
a condition that needs more public awareness and support,
especially when you look at the Numbers, as far as with ohioans,
(21:44):
how many people were affected and how many veterans in Ohio.
And so having,
for lack of a better term, it's almost like a stamp of approval or stamp of
legitimacy.
And when a lot of people focus on federal level stuff, but your state
level is just as important.
Because
(22:05):
the more governors you have that recognize it,
that could help within that state open up funding, or major medical institutions
shift funds to focus on fibromyalgia.
I live outside of Cleveland Ohio, so we have
the Cleveland clinic foundation, we have university health care system, and
we have mental health, and plenty of vas.
(22:27):
And a lot of these entities do their own internal research.
So having that
declaration made formally and legally,
this also puts us on these medical institutes radar.
And they might be like, oh, we should look into this, especially because
there's just this x amount of people in Ohio that have fiber Miles
(22:48):
and veterans.
And most veterans actually receive private health care
nationally, versus going to the ba.
So that's, another thing that helps break some stereotypes,
is that
everyone believes that veterans, all veterans go to the va for health care,
and there's about twenty million of us.
And back in 2019,
(23:08):
the va, that year only served 892
million veterans.
Then they're veterans such as myself, which I call, we do hybrid health care,
where you go to the va for some things and then go to private health care for
other things.
So that is something that is a major highlight, is saying, oh,
we also have veterans, and these other groups of people that you would think
(23:30):
traditionally would be going to certain systems only for their health care, but
they're also going to private health care.
So you know, these awareness
on a local, state and federal level, helps
entities,
individual society and medical facilities
and researchers recognize that,
(23:52):
oh, ok, let's look into this.
And they shift their funding internally, and it do some research, or
maybe they hire more staff to focus on treating people with five amalgia
that's exciting what you just
said, that there's different
models that veterans are using to get access to care.
(24:15):
Some of them are a hybrid model, which this is important, because we're
talking about
supply and demand.
Let's be real,
not everywhere in this country is going to have access to resources.
If I put you in the middle of the desert, crystal,
in some remote place,
(24:36):
is it likely that we're going to have access all the time, sometimes to
specialty types of care?
And that answer typically is no.
And so what we're hearing, what I'm hearing right is that in the Cleveland
area, there are a number of options.
(24:57):
There are a number of medical groups
that are established,
doing good work already
in trying to assist people that need care.
And that, I think, is a bright spot that we should continue to highlight.
Because as we think about the new economy, and I like to talk about the
(25:18):
new economy in the social magazine, volume two, crystal Kent is in it
sharing her thoughts.
She talked about, like the access,
in the need for
there to be more staff
to help.
One of the things she just talked about was how a hybrid model has helped her,
(25:38):
in some instances,
get access
when the va didn't necessarily have what she had, possibly, right?
So I think that this is an exciting
opportunity to
create new jobs.
And for people who are looking, especially within the college industry,
(25:59):
what jobs should I get into?
High school and others,
we're talking about preventative care, as well as also
chronic illness care.
And this is kind of a new economy where when we think about, how can we do the
right things moving forward to help others
(26:19):
in these types of amazing industries,
this seems like it could be a bright spot.
And I think about
how we can make it better.
In the work that crystal Ken is doing is really saying, look,
there's some things that, if we had a little bit more
staff,
(26:40):
would improve the lives of veterans.
And I think he said, what was a 2020
million?
22 million?
Was that's the number I heard?
Yeah, there's approximately
twenty million veterans currently.
And 18 million of them are female veterans.
You bring up a very great point when you're talking about an economic model,
(27:04):
because in health care, it is now being run as a systematic
business model.
And people find that frustrating.
I said, look,
these are the cards that we're dealt let's
work smart, not hard, and actually find ways
to
let these entities know that they're missing out on a lot of
(27:27):
major money
because they're not helping patients that have harder time accessing health care.
And so let's think of this in an innovative way.
Take out the word health care.
Take out medical it's being run like a business model.
And what do businesses want to do?
They want to reach more people.
(27:47):
Reaching more people, increases revenue.
Increasing revenue though, because we have a lot of businesses from banking
to the automotive industry, to healthcare, is that when they're
increasing their revenue, believe it or not, a lot of those entities are going
to put about twenty percent and shift it to research, or shift it to help support
(28:08):
those people in our communities that are not getting the access.
how do we have that conversation?
And one of those things is we come up with ideas
of innovation and health care.
And there are so many barriers for so many groups
that need access to health care, not just veterans, not just people with
(28:29):
fiber Miles,
but a variety of medical communities.
And I've worked for organizations
in the mental health Fields,
where
we actually provided community
health supports and community mental health supports.
And we took the teams to the neighborhoods.
The communities, we had mobile vehicles that are like, they're like RVs, that
(28:51):
are tricked out to become like a nini medical satellite, where we're going out
and outreaching these individuals that have no ability to access care in a
timely manner.
So
that's one of the things when we're thinking about advocacy,
we can't just say you need to provide more support, you need to have more
(29:14):
doctors.
We need to also come to the table with ideas and suggestions.
They might not be good ones.
I've had some bad ideas, but hey, good idea.
I'm not the type of person to say, this is a problem.
Fix it.
I'm the type of person that says, this is an issue.
Here are some possible solutions from a patient perspective that would help.
My community would help meet, how are we serving
(29:37):
native americans on reservations that are veterans?
are we serving those individuals that are in rural areas?
The other thing is, urban areas.
People assume that when you live in an urban area, that you have easier
access to health care because it's a Shorter distance, but not everybody has
a car.
Many people are relying on public transportation.
They don't have day care for their kids.
(29:58):
So they've got to bring all their children with them.
Or an elderly
parent they're taking care of might have alzheimer's or chronic condition
that they need oversight.
And all these are barriers that with some proactive innovation, innovative
solutions, we might be able to remove those, and then people have more access
to health care.
(30:19):
So our health care system is based on a model system, on a 95
company
entity, and we expect patients to rearrange their entire schedule or find
ways to overcome barriers to access health care.
It really needs to be the opposite.
I understand them running out a business model, but it really needs to
(30:43):
be a human services model, and identifying those barriers, not just
talking about it, but working with the communities to alleviate those barriers
so that more people can access health care.
Can you get back into it?
An educated, you're a fiery advocate, and you want to help.
But part of this help
(31:03):
has to do with
people also taking action,
being a soldier, being a veteran.
You're born a little bit differently with this
desire to serve, desire to work on yourself, have that self accountably be
the best you can be, right?
Do these things.
And one of the things, I think in our society, because we've had so many
(31:28):
overwhelming current events at times,
that there are these groups, and they're having these different experiences,
and we're looking for leadership.
We're looking for people that are saying, hey, I'm
focused on this area.
Crystal,
you have been focused specifically on the veteran community and other
(31:51):
communities as well.
But one of the big ones, recently, that you've been involved in, is working on
a special project.
this special project
is pretty important to the veteran community.
Again, twenty million
veterans.
And I think I heard you say, 18
(32:11):
women out of this.
So
what's important in this discussion is how we look at how
let people know that there's resources out there.
And then there's this project that you've been doing to kind of
communicate, differently
in additional other content.
(32:32):
Why don't you tell me about this amazing documentary
that you've been a part of, and our health and support?
Sure.
And again, this is
a
collaboration of a variety of people.
And to highlight
the power of social media and social
(32:52):
networking platforms, is, I connected
with a retired navy veteran
who is the cofounder of a film production company called brain dagger
films and just through to chat
and saying, these are some of the things that I do.
These are some of the things we're passionate about.
(33:13):
These are some of the things that
we want to tackle.
And so that cofounder is mo Taylor of brain dagger films, who is the retired
navy veteran.
And
obviously I'm an army veteran.
So we are
very acutely aware of the needs of the veteran community, especially like dispelling
(33:37):
stigmas and stereotypes and
perceptions about invisible illnesses.
And so as we were networking on social media, we came up with this
idea of
doing a documentary that highlights
the different aspects of being a military veteran living with invisible conditions,
(34:01):
and the unique experiences
veterans experience
living with invisible medical conditions, and the added layers, or barriers,
of
getting the support that we need.
So
Mr.
Taylor and I kicked back a variety of ideas, and then he was like,
(34:23):
write up the concept.
And I was like,
for documentary
about
the basically battle
a veteran contends with after getting out of this service, having to go to
war again,
to overcome all these stereotype stigmas and lack of access for
(34:44):
healthcare for invisible medical conditions.
So I said, ok,
i'll get that to you.
I forgot what I said, but it was like literally in the week.
And then Mr.
Taylor was like, oh, this is great.
And then I said, ok, well, what do you want to focus on?
Like,
do you want this to be more informational?
I can pull in veterans who would be great for this.
And
(35:04):
he was like, go for it.
So release today
is
a documentary
with brain dagger films
about the veterans and the scourge of invisible illnesses and all how it's
kind of like we've already done our battles and served our country.
(35:27):
Now we're battling again
to get the recognition,
the understanding validation support in health care
that we need
a variety of
medical conditions that are invisible.
And so I asked
okobo, my really good friends and fellow advocates and team members,
(35:49):
if they would collaborate on this.
And the one person is Brian talley, who is
the driving force behind the legislative
bill, tally bill that was signed into law on January of 2021.
He's also now the founder of today with tally podcasts, and he's a marine veteran
that,
(36:12):
out of no faults of his own, ended up experience some pretty
extensive
medical negligence at the va and sharing his journey and all the
obstacles he overcame.
So I asked if he would participate
to share his personal experiences.
And then I also asked a new data,
(36:34):
who is a combat army veteran, and she's also part of the veteran voices for
five or Miles a team,
if she would participate.
And she did.
And just like a quick little thing there that in most, like documentaries,
or educational pieces about veterans, it's predominantly male veterans, you
see.
So I wanted to flip this script where we're interviewing three people, and I
(36:58):
was one of the three.
So in this, we had two female, that are in someone male veteran,
just to promote the importance of recognizing that female veterans
need the support and understanding as well, and our needs are
unique, but also at times different from male veterans.
And then bryance devali,
(37:18):
he narrated
some of the informational pieces in this documentaries.
So really, this is kind of like
five person team that came together
to amplify
the voices of veterans living with different
invisible
medical conditions and the barriers that we contend with.
(37:40):
And the things that, if we could
basically address and resolve, would make it better for veterans to access
health care and get the medical support and understanding we need.
Along with highlighting the importance of why we need
support systems, along with how the role of social media placed in creating
(38:02):
those support systems
for veterans living with invisible disabilities,
almost
super busy.
And
one I just applaud to.
Again, you're suffering yourself, and you find some of the space and the
taunt to give others
(38:23):
to learn.
So thank you for your leadership on these different projects.
When I think about social good, again, crystal Kent is an example of that's,
why I've included her in the social good magazine show.
And again, when you want to learn more about what she's thinking about
there's concrete solutions that we're putting together in this magazine
(38:47):
to help others in our communities,
it's really meant to have a long term picture about
what could we do to listen to some of these advocates like crystal, who are
really in the trenches.
They know a lot of the details.
What could we do differently?
And we've been through a lot in our country, but I think it's important
(39:08):
that we continue to try to be a leader
in taking care of our own people,
providing
opportunities for jobs and ways in which we can
help others reduce suffering.
And at the same time, how do we make these new paths forward?
(39:29):
So from a preventative medicine side, that people are really continuing to
keep doing well
and making progress.
And that's a big deal for some folks.
And one of the big projects that I'm working on as well for veterans,
has to do with homeless.
(39:50):
And how do we
help get people to shelter in safety?
And security is a big thing.
And here in Los Angeles, we've had a number of challenges.
We have one of the largest veteran populations in the country,
and there's things that we can be doing,
potentially differently,
as a community to support our veterans.
(40:12):
And so I think that having leaders like crystal Kent, who are really our
subject matter experts, right?
Having them on my show in these different magazines and podcasts and
these different ways that we're all communicating out, it really is purposeful,
right?
Kristal, we're trying to be purposeful in this act of social good to help others
(40:38):
purposeful intent with purposeful actions.
And I honestly applaud you
being out in the trenches yourself helping our veterans who are
experiencing homelessness.
And just a little quick tidbit is that while there's twenty million veterans
(40:59):
and they're predominantly male veterans, the interesting piece, when
you look at population ratio percentage risk, is that female veterans
and LGBTQ veterans are actually at higher risk of being homeless than
their male counterparts.
It's not to say it's not a crisis with male veterans.
again, it comes down to these systems not providing the support for everyone,
(41:25):
every sub community, within the community of veterans, and there's
other countries that have declared homelessness
as a health care crisis.
And once they did that,
it shifts funds.
So I talked about this earlier.
When certain levels of government recognize something formally and officially,
what happens is funds get shifted to address that, whether internally or
(41:46):
from a governmental perspective or federal
aspect.
And so when we do that,
some of these countries that declared
homelessness as a health care crisis.
They were able to reduce
homelessness
in general
up to seventy percent,
(42:07):
and they declared it a health care crisis, a health crisis.
And when you do these things
it's like legitimizing it it's saying,
we wear as a whole,
as a society, as a nation, as a global
citizenship.
We need to
recognize this as a crisis.
(42:28):
And once you do these things,
that's where funding and support
comes in.
The other thing is in the United States, what frustrates me is, I
haven't looked in a while, but
when we were going through the worst of the shutdowns due to a pandemic,
we had a lot of time in our hands.
(42:48):
So I started going through all of the nonprofits that were registered with
guide star, that were providing supports and services and funding for
veterans who are homeless.
And I stopped counting at 200 because I got frustrated because I said, ok.
At about 207,
I said, I'm done.
This is just in the United States, all these nonprofits, and looking at how
(43:09):
much resources and funding they had.
And I thought, you know what, if they came together nationally,
I bet you could dramatically decrease
homelessness, amongst veterans, if they came together and pulled their skill
stats, resources, funding.
there are experts in different areas
(43:29):
serving this veteran population.
So I just,
me, I get kind of nerdy like that.
And I do this research, and I'm like, hmm,
to crucial period,
to unify,
to do things differently,
to allocate resources, there's prosthes that exist.
(43:53):
And it works in some areas somewhat.
And in some areas it doesn't, because it may not be executed, right?
And so I think that what the whole point of this show is how we share best
practices, learnings, rapidly,
and get this information to the people that are operating on the ground.
Look, everybody's out there trying to help and do things the best they can.
(44:15):
But the thing that we always talk about, especially those in the
caronically ill communities,
how you use your energy, is very important.
And so as we wrap up here,
thank you, crystal, for being on and sharing your thoughts again for part two.
And this has just been enlightening to listen to the victories that you've
(44:36):
experienced with the team
and the new resources that are available.
I just see optimistic
opportunities here really for us to increase research and
can't people realizing that?
Look,
it's ok.
There's some folks that have experienced what you're experiencing.
(44:58):
You're not alone
there's resources.
You've got to do work.
You've got to do the work.
But there are things that you can connect with that can potentially help
in our communities.
take you critical for the time
again.
Check out her website.
(45:19):
We're going to have the contact information available.
And also watch the new documentary let's support.
Some veterans, these folks are getting together to share this information
because it's important to our communities.
There's twenty million plus veterans out there that I think this message
should be shared with.
So, crystal, thank you for your time.
(45:40):
Thank you for what your team does,
and thank you for your service.
Ma'am?
I personally just really appreciate you.
So thank you.
Now,
I appreciate you more for getting you to space.
What you're doing is just as integral and important as what everybody else is
doing, because together we can make a difference.
(46:00):
One voice.
Thank you.
(46:28):
The social good magazine is designed to inspire others to make a difference in
their communities.
Created by Kristen Thomasino.
This show and magazine showcases the stories of people making a positive
impact in their neighborhoods.
And beyond, whether it's through volunteering, fundraising,
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