October 21, 2021 • 38 mins
When you are chronically ill, it not only impacts you, it impacts those around you. We talk about what this illness does to your relationships with your friends and family. We also learn key tips for advocating for those you love.
Special Guests: Randy (IG: @randy_shain3) and Bonnie Shain and Steven Barouh If you'd like to read the book: A Mother's Nightmare: My Battle with Breast Implant and the Opioid Crisis Follow us on Instagram: Kristin - @kristin_e_nobles Christine - @CTorres1017 For more information: www.sicktitties.com
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Close to the Chest with Kristen and Christine is brought
to you by I Heart Radio. Today is October six.
This is Kristin Nobles and I've been doing a lot
of thinking about the impact breast implant illness had on
my friends and my family, and it's almost immeasurable. I
think about how I missed major holidays events and could
not show up as the friend and family member the
(00:22):
people I love so deserved, the sacrifices I had to make,
like not being at my mother's funeral or not going
to things like parent teacher meetings with my daughter because
I wasn't strong enough for I was too sick, or
I was hospitalized. And I think about the burden it
took on them financially and emotionally to be there and
to face this issue for decades. And I wonder what
(00:45):
my life would be like had I not gotten sick,
what I have remarried, what I've had more children and
realized my dream to have a big family. And also
the people that I love that just didn't understand this,
and the guilt and shame I feel because at times
they at ACKed me, not the problem, thinking it was
all in my head or that I was making it
up for attention, and that was really awful. I felt
(01:06):
really ostracized and alone into the people who did step
up and insert themselves at times when I was too
embarrassed to even ask for help. I am so grateful
because I don't know where I would be without the
friends and family members who stuck by me. And I
don't know who I would have been to those people
I love had I not had this disease. But I
do know this cost me way too much. Been the
(01:31):
sin and the questions walk into the room, heads turning down, Chris.
Today we're talking about the impact breast implant illness has
on the friends and family members that support patients for
(01:55):
well can sometimes be years, if not decades of treatment
and diagnostic process, and unfortunately, many women reach out to
me and share that the hardest thing for them about
rest implant illness is not the pain they go through,
but the burden they feel this disease puts on their
friends and family. It's understandable because the toll I imagine
(02:15):
it takes on their relationships, given the financial impact, the
physical limitations, and of course the emotional roller coaster they
find themselves on can be very significant it is. However,
I know firsthand lots of people want to help us,
and I have met so many incredible friends and family
members along the way that want to know how they
(02:36):
can help their loved one overcome the disease and what
they can do to be more supportive. So I think
this episode is really important. Well, when talking about this issue,
it seems that support comes in so many different forms
and is certainly a key factor in someone a patient
being able to survive and thrive. Absolutely, if we've learned
anything through this journey, it's that the key to survival
(02:59):
is knowing that to get there, we are not alone.
And I'm honored to share some of these amazing advocates
that I've met along the way and have personally helped me,
and they can give us some tips on how to
offer the right emotional support during the process because it
can be arduous and financially, some tools to get through this,
(03:19):
but most importantly, just overall, how do you navigate this
crazy medical maze we find ourselves in. Well, I do
look forward to hearing from those who will stand by
their loved ones who are facing b I, because it
takes an incredible amount of strength to be able to
sustain the effort it takes to be a patient advocate. Absolutely,
and this episode is dedicated to my friend Stacy Shane
(03:42):
and her family. Stacy passed from breast implant illness and
was a friend I met in the community, an advocate
who really worked hard to raise awareness about the illness,
and someone we and her family miss greatly. Stacy has
done a lot while she was of us, and I'm
excited to share with her family what they've done to
(04:03):
continue her legacy. And I also want to dedicate this
to my daughter, who patiently waited for over twenty years
for her mom to get better, sacrifice most of her
childhood spending times in hospitals, et cetera, when she should
have been celebrating birthdays and holidays. And I think it's
important in this episode to acknowledge all of the family
(04:24):
members and friends that have given so much to make
sure that we could navigate through this disease and help others.
How wonderful and lucky you are to have such a
supportive daughter. Absolutely, I feel blessed, as with Stacy. So
who are we speaking with today? Well, before we speak
with Stacy's family, I'd like to introduce Stephen Baru, who
(04:45):
has been a life saving advocate for me, helping me
navigate through breast implant illness for over a decade. Stephen
is an attorney, so he brings a unique perspective to this,
and he's also seen me through the diagnostic and treatment
process in settings ranging from emergency rooms to intensive care
to surgical procedures and has been there to advocate in
(05:08):
all sorts of settings for me. Fine, today we have
with us Steven brew who has been an advocate, friend,
and confidant during my journey with dealing with breast implant
illness and brings a unique perspective as someone who has
(05:31):
been my family, my business partner and really fought for
me to get the answers I needed. And I wanted
to include you today, Stephen, and thank you first and
from us for being here. My pleasure to be here.
It's really important, I think, in this issue to talk
to the entire community that's affected when you go through
this issue, and a lot of time I think men
are discounted or not thought of as advocates for people
(05:53):
through the process. And I wanted to start by asking you,
as a man who's watched me go through this journey
to share with the list. There's a bit about what
you experienced with breast and plant illness and what was
most shocking to you. Well, this has been an interesting
journey because when we first started through this journey, we
didn't know what we were going after or where it
would end up, and it ended up here. And I
(06:17):
think the most interesting part is how many women are
affected by this and how you thought that this might
just be you and it turned out to be an
entire community or world of women going through this. That's
really been the most fascinating for me so far. And
what's it like out there as you're talking to women
about their breast and this issue and meeting people. Are
they surprised or you know, what's the reaction you get
(06:39):
from people when you share what you're experiencing with me?
At first, it's it's no, that really can't be. And
when I described to them where you've been and what
you're building in all of the women you've talked to,
it's it's interesting to hear after that how many women
are touched by this either have added it, didn't know
(07:00):
they had it, or know someone who had it. So
it's your talk has really started to open up conversation
about this. What's most shocking is the symptoms range. And
I think Steven, you and I saw over fifts throughout
the last ten years, and a lot of times I
would leave those places really depressed and crying and frustrated
and angry, and you've been there really to lift me up.
(07:23):
So for you, you know, as an advocate dealing with
me who at times was just hysterical, you know, what
can you recommend to friends and family who are watching
patients go through this? And what were some things you
helped me do to really have a voice. Well, first,
let me say I'm shocked that it took nine years
to get to this point of realization about this disease,
(07:44):
if that's what we call it now, And it's been
a battle. It's been a battle because doctors didn't see it.
Doctors didn't know of it. You've had it for a while,
and yet all of the doctors you saw just didn't
know of it. And so that's been that. I think
that was most traumatizing to you to have been seen
by so many doctors who just dismissed this as an ailment.
(08:07):
And it turns out that this ailment may have contributed
to a lot of the other ailments that you have,
So that was that's the most inspiring to me. Wen.
You've seen me have thousands, you know, hundreds of seizures,
sometimes you know, multiple in a row, and I think
you know, as an advocate being in the hospital so
many times. Do you mean sharing with the listeners a
(08:28):
bit about what it was like for you to, you know,
talk to these doctors while I was having major issues
like you're saying, these weren't mild symptoms. I was having seizures,
my heart stopping, I had brain infections, and you were
the one talking to the doctors. And how did they
treat you in me during the process? Did you feel
I think it was most discouraging is the word I
(08:50):
would use, because and and we we shook our heads
so many times for so many years, that so much
was going on in hospital beds in front of doctors
who just dismissed it as something way more minimal than
than it actually was. I don't know how much of
all of your ailments we can contribute or a tribute
(09:13):
to this, but I really believe that had we seen
doctors who knew of this and took it seriously earlier
your plight would not have taken as long as it has.
You were really adamant that I didn't give up. And
I think to the family members listening that don't have,
you know, resources, what would you advise to them in
(09:33):
terms of being a support person, Because it had to
be pretty frustrating to watch these doctors and me suffer
The process of hospitals and is a most frustrating one.
If you don't have an advocate for you in a
hospital setting, it's a really difficult place to be. It's
very scary and it's very frustrating. My takeaway on this
(09:56):
would be you can't ever give up. You can't take
no for uh an answer. You have to continue on
your journey to get doctors too to hear you and
help you. I was diagnosed three years ago. We were
in the hospital and a doctor came to me after
I had a horrible brain infection and told you and
(10:17):
I that this was breast implant illness and that my
implants were quote killing me. What was that moment like
for you? To be honest, I was shocked. I had
very little knowledge of this um We had talked about
it just briefly, and at that point it became a
reality that became my oh my god moment of you're
going through this, how many other millions of women are
(10:39):
going through this? Who's to blame? But more importantly, how
do you fix it? And oh my god, what if
we knew this two years ago and had taken care
of this, then where would we be now. It's a
really great point because I think since then, you know,
I had them removed. We met with a surgeon, he
told me to replace them. I called you about months
(11:00):
after my surgery and told you I still wasn't feeling
well and that my implants had actually been recalled and
that these new ones were making me sicker. What was
that like for you? As someone who's an attorney now
my advocate and also my friend? That was even more
floor dropping than the first time we discussed this. My
mind went to another place. How could the doctor do this,
(11:23):
How could the hospital allow this? How does the manufacturer
not take responsibility for this? What do we do next?
How do we get these out as soon as possible?
That's where my brain went. Did you feel that you
were taken any more seriously in the hospital settings when
you went with Kristen, did you feel like either as
(11:43):
a man that you were taken more seriously, um as
an advocate or maybe as an attorney? Absolutely, and all
of that. I mean, picture her in a bed crying,
Picture me standing up, not crying, being forceful, being an attorney,
demanding respect, communicating in a professional manner made me much
(12:03):
more credible at the moment. I can't even tell you
the number of conversations I had with really mad, belligerent
doctors who I had to take to task just to
solve the problem that we had at the moment. So
the answer is, yes, I was much more credible because
(12:24):
I was not the patient, but I was the advocate
of the patient. What would you advise to men in
terms of really tactics and things when they're approaching their spouse,
their partner, their friend, their sister about this issue, because
I'm sure it wasn't easy for you to talk to
me about, let alone other women. You know, that's a
really interesting point that I that's a perspective that I
(12:45):
had not thought about yet. A married man who loves
his wife who happens to have this and it's got
to be so trying on the gentleman because he knows
that he loves his wife as as she is, and
then she might not be And that's a perspective I
(13:06):
had not thought of. Like you said, it takes a partnership,
and what partners do is they step up for each other.
And I'm I'm certain that every husband in the world
would find this trying to begin with and then go
into loving, caring, support your partner spouse mode. Where would
you be if Stephen wasn't in your life? Um, I
(13:28):
wouldn't be noble. Um. A lot of people ask me
about my day job at be noble and he is
the b and be noble, which is the verb and
what I do, And in my life I would not
have had the support emotionally, financially, physically, or the faith
to get through this. My daughter wouldn't be where she
is today because he really stepped in as a co parent,
(13:50):
as an advocate, as a friend and a supporter. And
he also gave me faith and connecting to someone again.
You know, this disease has a tenant. He'd to isolate you.
You want to be alone, you don't necessarily want to
be around people. And so without Stephen, I don't think
I would be here today. I don't think I would
have had the strength or the fortitude to they with
(14:11):
the doctors, the lawyers and everything, and physically I wouldn't
have been able to get there because he also drives
me everywhere. His shame is an easy place to go
when you're out of control. That's that's where people end up.
And I tried through all of this just to teach
and share with Kristen that this was not of her choosing,
(14:35):
that these were not the choices that she's made, that
this is just fate, and that she had to take
this nonsense by the horn and make it something and
fight her way through it and play her way through
it to get to where she needed to be, which
was healthy. And so it's been a long fight, and
(14:55):
this B I I now seems to be close to
the last day ages of this fight for her in
a good way, because once she solves this, there's medical
reports that say that this B I I disease is
causing some of her other illnesses, so it'll be interesting
to see if her plight goes that way. You know,
(15:17):
I think families are comprised of all sorts of people.
We have a family. You know, you've become my partner,
my advocate, my close, close friend, and really the person
who helped me get through this. So I think you know,
to kind of wrap this up and bring it to
close as the patient, as the friend, you were able
to talk to these doctors in a way that was,
(15:37):
like you said, very common, rational. And so what would
you recommend to people when they're communicating with their doctor
in terms of teaching them how to treat them and
commanding the respect that, like you said, as patients we deserve,
but also getting the response that a white attorney can
get from a doctor at his alma mater. Well, patients
have to stand up for themselves. That's first and foremost.
(16:00):
The days of letting doctors tell you what to do
and how they're going to treat you and what they're
going to give you, those days are over. You have
to be your own advocate, and as you're doing that,
you have to bring in other people who can help
you also work through the system. It's a very difficult system,
and you have to work it and you have to
(16:21):
work it hard because it's all about you and your
health and your family and your life, and that's the
only thing that's important in this case, and so you
have to stand up for yourself. That's what that would
be my my key, my key takeaway here, Well, that's
what we're asking for. I think with every woman who
I meet when I share with them the costs these
(16:42):
implants have had. Overall economic impact of this is emotional, financial, physical,
in spiritual, because you start to lose faith in organizations
and authority figures that you thought you could trust, and
then what you learn is that we don't know what
we don't know. The friends and family that have supported
me through this gave me the environment to not be okay.
As women, we have to accept and announced that we're
(17:04):
not okay and also now that we deserve to be
okay and to fight for that place. And I think, Stephen,
you've been such a great help and supporter, and I
wish all of my fellow victims and patients and survivors
have the same support because it's key. And now you're
not alone, as we all say, you're not alone. Y,
thank you, thank you. Fine, Kristen, you are very lucky
(17:39):
to have friends and advocates that are so supportive that
you can count on when things get rough. Absolutely, Stephen
is a true renaissance man improves that advocates are angels
and key to helping us get diagnosed, emotionally, cope with
what we're going through, and are ultimately there to help
make sure your rights are protected well. Next, we're going
to meet two people who have a story we wish
(18:00):
we didn't have to share, Randy and Bonnie Shane, or
Stacy's mom and brother, and we will be speaking with
them on what is the anniversary of her passing. This
is a difficult conversation for me to have because Stacy
is someone who I met early on in my BII
journey in a chat room before her passing, and she
(18:20):
was such a shining light of hope when I was
personally in such a dark space. And the work that
her family has done too since she passed to share
her story to raise awareness and use their pain is
fuel has literally helped to save other women's lives and
is actually how I came to know them, and I
hope sharing their story helps them help more women and
(18:42):
honors Stacy's final request, which was to use her story
to make sure other women didn't have to suffer. First,
and foremost, I want to thank you both for joining
when I tell people that you know, our breasts are
killing us and it causes all these secondary issues. A
lot of things come up, and so you guys have
(19:03):
been not only through this, but you've had the worst
outcome with it. And I wanted to give you a
chance to first and foremost tell the listeners about Stacy
what you guys experienced. And then I'd love to, you know,
jump in and talk about the book and some action items,
but really I want them to get to know Stacy
and her family because you really have done an amazing
(19:23):
thing to raise awareness, share her story, and make sure
that nobody forgets b I I is absolutely real. I
guess that I could say that I always felt that
I didn't hit the white doctors, and then when I
started going to the major hospitals, I figured I'd meet
them there. But Dr Cole told me she worked at
(19:46):
one of the major hospitals with with John Wpkins and
they didn't believe in it at all. So I really
was banking my head against the wall at even the
major hospitals. So you have a daughter who is sick.
Did Stacy when did she start to suspect it was
her implants? She had a lot of weird things going on.
(20:06):
I remember I was at her house and she was
talking about eating something that she felt was coming back
up through her through her nose, noodles. She was saying,
I'm like, so there's there's noodles coming through my nose.
I don't want to like, what are you talking about? Noodles?
So it's just the weirdest feeling. Then then she thought
that she had a LSUM. She was getting, you know,
all types of tests for a l S and then
(20:28):
she just started to research and then she found this
community and then, uh, you know that's she was the
one that found Dr Coleb herself, trying to find someone
who believed in this to be able to guide her
um on the right path. Anyone other than Dr Coleb.
They just did not believe her. They thought that she
was crazy. They wanted to give her antidepressants. Every single
doctor she went to, she would get her hopes up
(20:51):
for the next doctor that she would see and only
be let down, you know by that that doctor. And
you know it came to appointment She's like, I'm I'm
just never going to get better because no one wants
to help. So you guys sound like you were obviously
an amazing support group. Do you mind sharing Randy and
Bonnie with the listeners a bit about Stacy as person
because she really was just a really strong, amazing mother, daughter, friend, well,
(21:15):
all all the above. I mean at her funeral they
were over four people, so that that shows how many
lives that she touched. There's no one, no one else
like her, no one's similar, and it was it was
a very very big boss for us, to say the least.
When for our listeners. Unfortunately, Stacy passed in and one
(21:36):
of the things that was, you know, meeting you, Randy,
when you talked about this um to take a step
back with the illness. You said that you were going
to her house. She were saying how she was st struggling.
Do you mind sharing with everybody? Unfortunately what you guys
had to go through with Stacy and what happened, because
I think it's so unbelievable to most, but it's not
(21:57):
only true, it's horrendous. The worst thing that we did
was to give her that that spinal tap. She thought
she had a LS and she wanted to know her
neurologists said to meet him at the ear and he
didn't show up. He had an emergency and he instructed
(22:17):
the off position to do it. Now I wasn't there
with her. I would have never have allowed that, never,
and it was a botched spinal tap, and she developed
head pain that never ever went away. I even took
her down to North Carolina the Duke to try to
(22:38):
close up the holes she felt. She felt that was
what brought silicone rand plants that were roaming around her
body straight up to her brain because in her head,
she there was no way that she was going to
get better because the all the chemicals were shot up
to her brain. And we tried everything everything to get
(22:59):
those at the body. The only way we learned about
this disease is all talking, because my doctor is never
going to know what your doctor knows, what the other
doctor knows. Someone going through what we call head pain
from a servical spinal fluid leak is the most painful
thing I've had. And here's the irony. It was my
CSF leak that made them say it might be your implants.
(23:21):
Prior to that, they kept saying, we have no idea
what it is. And it was one doctor so with
Stacy was going through and I also heard you say
they said she's going to the emergency room, she's going
to all different sides of the medical system, which had
to be exhausting for her. That was just the beginning.
I mean, that was where it all started. Well, what
what I learned um halfway through my cousin, who is
(23:44):
a physician in California, said, have you a physician right up,
a belief synopsis of what you're going through and take
that with you so that they see it from a
physician to a physician and a whole more weight. It
doesn't make you look like you have all kinds of
things going on long in your head. So we did that,
(24:08):
not that anybody was able to help up even with that.
So going back to your question about did they did
their rupture, they bled, They bled into her tissue. They bled,
and that's how it got into her body. But the laboratory,
the laboratory was named. Dr Lay said that they were
the worst implants he's ever seen, and he's seen many.
(24:32):
Body and Randy have not only been out publicly talking
and being so brave to discuss with people what b
I I S and what it is and how it
happens potentially, but also when I read the book, a
mother's nightmare dealing with b I in the opiate crisis.
In the first line of it is, if you're reading this,
then I didn't make it. And you asked me prior
(24:54):
to recording why I did this podcast, and that is
exactly why. And I think being able to feature you
both and let you talk about Stacy, this wasn't a
lack of strategy. It wasn't a lack of determination. Do
you mind sharing with the listeners how much of a
lack of understanding it was between these doctors, et cetera.
(25:14):
She went to the top hospitals in the country. When
she went to the top doctors, and because it's not
an agreed upon illness that doctors understand, and there's no
money for research into this illness, so doctors get scared
about what they don't know, so if they try to
(25:34):
treat symptoms, but they don't try to treat the root cause.
And especially with something like this where there's so much
money in the implant industry, where you know, lobbyists or
quieting down doctors that want to help. And this is
where Stacy was caught in the middle of all this,
where nobody knew how to help her, and she was
in so much pain that she couldn't even treat her
pain so like it was like it was like getting
(25:56):
attack from both sides. It's like I'm trying to treat
one thing, but on the other side of the coin,
I'm in pain, and how do I stop my pain?
And she always said that her pain meds would help
her body pain, but nothing was helping her head pain.
She's like, it felt it feels like someone is taking
an ax and just just hitting me in the head
NonStop all day long. What was your experience watching Stacy
(26:20):
go through what she went through? It was it was very,
very difficult because she became a different person. She she
didn't have that humor. Really, she was withdrawing away from
people she knew who she was, and she saw herself
being someone completely different. And that's what bothered her the most.
(26:40):
For her kids, I don't want my kids to remember
me like this. I want my kids to remember me
as the fund Stacy, the one that would play. If
you go over her Facebook, you'll see five million videos
of her playing with her kids. And she even did
that through all the pain. You know, she did it
because she wanted them to remember her a certain way.
(27:00):
So if by her not able to do the things
that she used to do was the thing that crushed
her the most. Isn't it horrible how this experience turns
into guilt for the victim because as mom, she was
trying to shine through. And like you said, you can
look at the pictures, the videos, the comments, and you
can see how she just stayed so positive. But like
(27:22):
you talked about, there's these private moments that I'm sure
we're terrible. And do you mind sharing a bit about
the book and how that came about, because it's a
pretty powerful piece of work. When like cousin told me
to keep a log for the doctors, Stacy thought it
would be a good idea too, And I had everything
(27:44):
with me still, I still had all the appointments and
names of doctors, so she yes, if I could put
it together, um and possibly make a story. I mean,
the word book didn't come to a little later. It
was just putting every thing that we had together so
that it could be a man who script or possibly
later on. Um. She was just she was trying to
(28:07):
help people. To the last day. It was all about
other people instead of herself, because she had given up
on herself, because everybody else gave up on her, so
she was trying to not give up on everybody else
out there going through the same thing that she's going through.
So she said, my mom, like, I'm gonna start this
and I want you to finish it, and I want
you to get it out to as many people out
there so they can, you know, the ones that have
(28:29):
implants can realize, you know, the dangers of it, and
the ones that are looking to get them, Hopefully they don't.
What you're saying, unfortunately is not uncommon and it impacts
the whole family. And so I don't want to take
you to this awful place, but it sounds like Stacy
had multiple neurological physical and you know she was literally
(28:50):
wasting away. What ended up to share with the listeners,
how did Stacy pass and how how did you guys
get through this? Well? Towards the end, um July was
her birthday, Okay, I took her and all three kids
to Canada and um we went Niagara fold and just
(29:14):
walking up that hill, I saw she was faltering and
that night she developed pneumonia. Of course we didn't know
it was pneumonia. My grandson, the older one, you know,
woke me up and said, mommy's not breathing right, and
we um. I drove home at two o'clock in the morning.
(29:35):
So we drove home, made a home, and I took
her over to the local hospital where she had that
spinal tap. Unfortunately, that was a mistake because as soon
as she got into the hospital and they took all
the tests and she had the double pneumonia, she said,
go out and get my stuff from the car. No
sooner did I come back. Did they knock on her?
(29:57):
So they emptied out all the pain medicine from her body.
So wasn't she wasn't no deing by the way, it was.
She had pneumonia, and she was like this and they
gave her an arcan at this at this hospital, like
she's like and then she's like, what are you doing?
What are you doing? Why are you? Why are you
doing this to me? For maybe ten fifteen minutes to
(30:17):
get gramming all the stuff and canting all this stuff,
and because she was staying over, okay, and then when
she went home, I think she was there for a
week with the pneumonia. She was there for a week
before everybody got no place. We went home and she
was having such bad diarrhea that she asked if her
(30:42):
main doctor, who was her rheumatologist, would write a script
for Regland. As he was signing the the prescriptions, he
never looked at the reguling. The red Land and her
pain medicine collided. He came to my house to pay
(31:02):
a chivical and said, I never would have written it
had I looked at it, because they're not supposed to be.
Why are you telling me that you made a mistake.
So she ended up having like lockjaw. She couldn't like permanently,
like open, like scary face. She went to the to
the local hospital, Jersey Shore Medical Center in Neptune. You know,
(31:25):
she's like, am I going to be like this forever?
And then I got the call the following morning morning
of September six from my dad. But her her boyfriend
at the time, called my parents saying that Stacy was
was unresponsive. The guilt that women feel and what your
daughter went through and being unresponsive, everybody's heartbroke because Stacy
(31:46):
didn't quit. This disease took Stacy. And I think it's
so important for women out there to know that they
didn't do this to themselves. They're not failing their children.
And the greatest thing that's happened out of this bi
movement is that women know they're not alone. And I
just want to honor what Stacy has done to not
only change your lives, but the lives of so many women,
(32:07):
and the bravery of you guys sharing her story has
been not only an inspiration but a life saving journey.
Just thank you for everything you do. And I'm really
sorry this is why we met, but I'm so glad
that I know you both. Thank you, thank you, thank
you so much for having us Christian. What an amazing
(32:31):
and loving family. We should all be that lucky. Absolutely
there and credible people. And for those of you who
want to read Stacy and Bonnie's book, it's actually called
a Mother's Nightmare, My Battle would Breast implant Illness and
the Opiate Crisis. Yeah, we put a link to it
in our resources page on Sick Titties dot com. It's
an absolute must read. So, Chris, meeting these family members
(32:54):
was not only emotional, but also a reminder to me
of how much this disease costs not only us but
those people that we love, our friends and our family
who go through it with us. Well. I think we
learned that although it is difficult, advocates are very necessary
and they want to be there for you. This is
not a burden, but a blessing for those who show
up to support, and they are key to survival. I
(33:18):
know firsthand it's so important to have an advocate who's
not only able to help you in so many ways,
but also just knowing that there's no one way to advocate.
I think what I learned today is that each advocate
has learned some unique strategy that we can all apply,
and a few we saw today we're you know, pretty compelling.
(33:38):
I think we found out about b I I absolutely.
I think for most patients it's other people who discover
b I I from support groups, and they're that critical
person to reach out to the patient and the person
and say, hey, this might be what's ailing you. Yeah.
And also Bonnie, who's such an impressive researcher. Yeah, she
sought out doctors and really worked hard to identify and
(34:01):
find people who were even capable of helping Stacy, and
was persistent in you know, driving her to places that
were far away getting appointments and really went that extra
mile to find resources at a time when they were
really difficult to find. We also learned that advocates must
be very persuasive. Yeah, it's pretty crazy to me, you know,
being their first hand to see how Stephen literally had
(34:24):
to represent me in the hospital and how hard the
Shanes had to work to convince doctors to take stacy. Seriously,
I think what I've learned is that when you're sick,
it's really hard to be an advocate because advocates have
to be diligent. They've got to be articulate, driven, persuasive,
and ultimately lobbyists who get those doctors and experts that
(34:45):
can help us to support us and really not give up.
And they have to be persistent, never give up, trying
to find the answers that is going to give the
b I I patients hope. Yeah. I can tell you
there are many times where I was feeling like there
was no hope, and it was my friends, my daughter
Stephen coming to me and being really clear that we
(35:07):
were not going to give up, that there was going
to be the next step in constantly coming up with
an alternative to giving up. To quote one of my
favorite movies, Never give Up, Never Surrender. When on that note,
I think what we've learned is that for me, just
having people be there, Chris is the key. I think
the most important way to be an effective advocate is
(35:29):
to show up because I think for me, the biggest
gift throughout my journey was the emotional support people gave me,
and their presence was truly what I needed just to
be able to bear this journey. Yeah, I no, I
agree with you. I think like, just be there, just
be there. And I think what we've learned is that
(35:50):
not being alone is everything. And with the amazing friends
and family members that have shown up who have advocated
and supported us, this has turned into a community of
incredible people that are very quickly sharing information, supporting each other.
And I think it's important to honor and recognize that
this journey not only impacts us all, but these advocates
(36:11):
desverve our, honor, our love, our support and recognition because
they are the two heroes in this journey. Together, we
are not alone. Close to the Chest with Kristen and
Christine has been brought to you by b Noble Media
Group and I Heart Radio. A very special thanks to
our guests Stephen Baru and Randy and Bonnie Sheen. Now
(36:34):
I'd like to share some gratitude, a very special thanks
to I Heart Radio, to our Parker and her I
Heart Radio marketing team, and a big big thanks to
our executive producer, Ramsey Yacht. If you or someone you
know would like to know more about breast and plant illness,
please visit sick Titties dot com. That's s I c
(36:54):
K t I T t i e s dot com. Also,
please follow us on Instagram at sick dot tittis and
at b Noble Art that's b n O B l
e A r T. And we would also love to
have you join our Facebook page at b Noble on
B I I and please remember you're not alone. Together
(37:18):
we can beat this. The views and opinions expressed are
solely those of the podcast author or individuals participating in
the podcast, and do not represent the opinions of my
Heart Media or its employees. This podcast should not be
used as medical advice, mental health advice, mental health counseling
or therapy, or as imparting any health care recommendations at all.
(37:39):
Individuals are advised to seek independent medical counseling, advice, and
or therapy from a competent healthcare professional with respect to
any medical condition, mental health issues, health inquiry, or matter,
including matters discussed on this podcast. Close to the Chest
with Kristen and Christine is a production of I Heart
Radio and produced Inner Studios located in Atlanta, Georgia. For
(38:03):
more podcasts from I heart Radio, visit the I heart
Radio app, Apple Podcasts, or wherever you listen to your
favorite shows.
Close to the Chest with Kristen and Christine is brought
to you by I Heart Radio. Today is October six.
This is Kristin Nobles and I've been doing a lot
of thinking about the impact breast implant illness had on
my friends and my family, and it's almost immeasurable. I
think about how I missed major holidays events and could
not show up as the friend and family member the
(00:22):
people I love so deserved, the sacrifices I had to make,
like not being at my mother's funeral or not going
to things like parent teacher meetings with my daughter because
I wasn't strong enough for I was too sick, or
I was hospitalized. And I think about the burden it
took on them financially and emotionally to be there and
to face this issue for decades. And I wonder what
(00:45):
my life would be like had I not gotten sick,
what I have remarried, what I've had more children and
realized my dream to have a big family. And also
the people that I love that just didn't understand this,
and the guilt and shame I feel because at times
they at ACKed me, not the problem, thinking it was
all in my head or that I was making it
up for attention, and that was really awful. I felt
(01:06):
really ostracized and alone into the people who did step
up and insert themselves at times when I was too
embarrassed to even ask for help. I am so grateful
because I don't know where I would be without the
friends and family members who stuck by me. And I
don't know who I would have been to those people
I love had I not had this disease. But I
do know this cost me way too much. Been the
(01:31):
sin and the questions walk into the room, heads turning down, Chris.
Today we're talking about the impact breast implant illness has
on the friends and family members that support patients for
(01:55):
well can sometimes be years, if not decades of treatment
and diagnostic process, and unfortunately, many women reach out to
me and share that the hardest thing for them about
rest implant illness is not the pain they go through,
but the burden they feel this disease puts on their
friends and family. It's understandable because the toll I imagine
(02:15):
it takes on their relationships, given the financial impact, the
physical limitations, and of course the emotional roller coaster they
find themselves on can be very significant it is. However,
I know firsthand lots of people want to help us,
and I have met so many incredible friends and family
members along the way that want to know how they
(02:36):
can help their loved one overcome the disease and what
they can do to be more supportive. So I think
this episode is really important. Well, when talking about this issue,
it seems that support comes in so many different forms
and is certainly a key factor in someone a patient
being able to survive and thrive. Absolutely, if we've learned
anything through this journey, it's that the key to survival
(02:59):
is knowing that to get there, we are not alone.
And I'm honored to share some of these amazing advocates
that I've met along the way and have personally helped me,
and they can give us some tips on how to
offer the right emotional support during the process because it
can be arduous and financially, some tools to get through this,
(03:19):
but most importantly, just overall, how do you navigate this
crazy medical maze we find ourselves in. Well, I do
look forward to hearing from those who will stand by
their loved ones who are facing b I, because it
takes an incredible amount of strength to be able to
sustain the effort it takes to be a patient advocate. Absolutely,
and this episode is dedicated to my friend Stacy Shane
(03:42):
and her family. Stacy passed from breast implant illness and
was a friend I met in the community, an advocate
who really worked hard to raise awareness about the illness,
and someone we and her family miss greatly. Stacy has
done a lot while she was of us, and I'm
excited to share with her family what they've done to
(04:03):
continue her legacy. And I also want to dedicate this
to my daughter, who patiently waited for over twenty years
for her mom to get better, sacrifice most of her
childhood spending times in hospitals, et cetera, when she should
have been celebrating birthdays and holidays. And I think it's
important in this episode to acknowledge all of the family
(04:24):
members and friends that have given so much to make
sure that we could navigate through this disease and help others.
How wonderful and lucky you are to have such a
supportive daughter. Absolutely, I feel blessed, as with Stacy. So
who are we speaking with today? Well, before we speak
with Stacy's family, I'd like to introduce Stephen Baru, who
(04:45):
has been a life saving advocate for me, helping me
navigate through breast implant illness for over a decade. Stephen
is an attorney, so he brings a unique perspective to this,
and he's also seen me through the diagnostic and treatment
process in settings ranging from emergency rooms to intensive care
to surgical procedures and has been there to advocate in
(05:08):
all sorts of settings for me. Fine, today we have
with us Steven brew who has been an advocate, friend,
and confidant during my journey with dealing with breast implant
illness and brings a unique perspective as someone who has
(05:31):
been my family, my business partner and really fought for
me to get the answers I needed. And I wanted
to include you today, Stephen, and thank you first and
from us for being here. My pleasure to be here.
It's really important, I think, in this issue to talk
to the entire community that's affected when you go through
this issue, and a lot of time I think men
are discounted or not thought of as advocates for people
(05:53):
through the process. And I wanted to start by asking you,
as a man who's watched me go through this journey
to share with the list. There's a bit about what
you experienced with breast and plant illness and what was
most shocking to you. Well, this has been an interesting
journey because when we first started through this journey, we
didn't know what we were going after or where it
would end up, and it ended up here. And I
(06:17):
think the most interesting part is how many women are
affected by this and how you thought that this might
just be you and it turned out to be an
entire community or world of women going through this. That's
really been the most fascinating for me so far. And
what's it like out there as you're talking to women
about their breast and this issue and meeting people. Are
they surprised or you know, what's the reaction you get
(06:39):
from people when you share what you're experiencing with me?
At first, it's it's no, that really can't be. And
when I described to them where you've been and what
you're building in all of the women you've talked to,
it's it's interesting to hear after that how many women
are touched by this either have added it, didn't know
(07:00):
they had it, or know someone who had it. So
it's your talk has really started to open up conversation
about this. What's most shocking is the symptoms range. And
I think Steven, you and I saw over fifts throughout
the last ten years, and a lot of times I
would leave those places really depressed and crying and frustrated
and angry, and you've been there really to lift me up.
(07:23):
So for you, you know, as an advocate dealing with
me who at times was just hysterical, you know, what
can you recommend to friends and family who are watching
patients go through this? And what were some things you
helped me do to really have a voice. Well, first,
let me say I'm shocked that it took nine years
to get to this point of realization about this disease,
(07:44):
if that's what we call it now, And it's been
a battle. It's been a battle because doctors didn't see it.
Doctors didn't know of it. You've had it for a while,
and yet all of the doctors you saw just didn't
know of it. And so that's been that. I think
that was most traumatizing to you to have been seen
by so many doctors who just dismissed this as an ailment.
(08:07):
And it turns out that this ailment may have contributed
to a lot of the other ailments that you have,
So that was that's the most inspiring to me. Wen.
You've seen me have thousands, you know, hundreds of seizures,
sometimes you know, multiple in a row, and I think
you know, as an advocate being in the hospital so
many times. Do you mean sharing with the listeners a
(08:28):
bit about what it was like for you to, you know,
talk to these doctors while I was having major issues
like you're saying, these weren't mild symptoms. I was having seizures,
my heart stopping, I had brain infections, and you were
the one talking to the doctors. And how did they
treat you in me during the process? Did you feel
I think it was most discouraging is the word I
(08:50):
would use, because and and we we shook our heads
so many times for so many years, that so much
was going on in hospital beds in front of doctors
who just dismissed it as something way more minimal than
than it actually was. I don't know how much of
all of your ailments we can contribute or a tribute
(09:13):
to this, but I really believe that had we seen
doctors who knew of this and took it seriously earlier
your plight would not have taken as long as it has.
You were really adamant that I didn't give up. And
I think to the family members listening that don't have,
you know, resources, what would you advise to them in
(09:33):
terms of being a support person, Because it had to
be pretty frustrating to watch these doctors and me suffer
The process of hospitals and is a most frustrating one.
If you don't have an advocate for you in a
hospital setting, it's a really difficult place to be. It's
very scary and it's very frustrating. My takeaway on this
(09:56):
would be you can't ever give up. You can't take
no for uh an answer. You have to continue on
your journey to get doctors too to hear you and
help you. I was diagnosed three years ago. We were
in the hospital and a doctor came to me after
I had a horrible brain infection and told you and
(10:17):
I that this was breast implant illness and that my
implants were quote killing me. What was that moment like
for you? To be honest, I was shocked. I had
very little knowledge of this um We had talked about
it just briefly, and at that point it became a
reality that became my oh my god moment of you're
going through this, how many other millions of women are
(10:39):
going through this? Who's to blame? But more importantly, how
do you fix it? And oh my god, what if
we knew this two years ago and had taken care
of this, then where would we be now. It's a
really great point because I think since then, you know,
I had them removed. We met with a surgeon, he
told me to replace them. I called you about months
(11:00):
after my surgery and told you I still wasn't feeling
well and that my implants had actually been recalled and
that these new ones were making me sicker. What was
that like for you? As someone who's an attorney now
my advocate and also my friend? That was even more
floor dropping than the first time we discussed this. My
mind went to another place. How could the doctor do this,
(11:23):
How could the hospital allow this? How does the manufacturer
not take responsibility for this? What do we do next?
How do we get these out as soon as possible?
That's where my brain went. Did you feel that you
were taken any more seriously in the hospital settings when
you went with Kristen, did you feel like either as
(11:43):
a man that you were taken more seriously, um as
an advocate or maybe as an attorney? Absolutely, and all
of that. I mean, picture her in a bed crying,
Picture me standing up, not crying, being forceful, being an attorney,
demanding respect, communicating in a professional manner made me much
(12:03):
more credible at the moment. I can't even tell you
the number of conversations I had with really mad, belligerent
doctors who I had to take to task just to
solve the problem that we had at the moment. So
the answer is, yes, I was much more credible because
(12:24):
I was not the patient, but I was the advocate
of the patient. What would you advise to men in
terms of really tactics and things when they're approaching their spouse,
their partner, their friend, their sister about this issue, because
I'm sure it wasn't easy for you to talk to
me about, let alone other women. You know, that's a
really interesting point that I that's a perspective that I
(12:45):
had not thought about yet. A married man who loves
his wife who happens to have this and it's got
to be so trying on the gentleman because he knows
that he loves his wife as as she is, and
then she might not be And that's a perspective I
(13:06):
had not thought of. Like you said, it takes a partnership,
and what partners do is they step up for each other.
And I'm I'm certain that every husband in the world
would find this trying to begin with and then go
into loving, caring, support your partner spouse mode. Where would
you be if Stephen wasn't in your life? Um, I
(13:28):
wouldn't be noble. Um. A lot of people ask me
about my day job at be noble and he is
the b and be noble, which is the verb and
what I do, And in my life I would not
have had the support emotionally, financially, physically, or the faith
to get through this. My daughter wouldn't be where she
is today because he really stepped in as a co parent,
(13:50):
as an advocate, as a friend and a supporter. And
he also gave me faith and connecting to someone again.
You know, this disease has a tenant. He'd to isolate you.
You want to be alone, you don't necessarily want to
be around people. And so without Stephen, I don't think
I would be here today. I don't think I would
have had the strength or the fortitude to they with
(14:11):
the doctors, the lawyers and everything, and physically I wouldn't
have been able to get there because he also drives
me everywhere. His shame is an easy place to go
when you're out of control. That's that's where people end up.
And I tried through all of this just to teach
and share with Kristen that this was not of her choosing,
(14:35):
that these were not the choices that she's made, that
this is just fate, and that she had to take
this nonsense by the horn and make it something and
fight her way through it and play her way through
it to get to where she needed to be, which
was healthy. And so it's been a long fight, and
(14:55):
this B I I now seems to be close to
the last day ages of this fight for her in
a good way, because once she solves this, there's medical
reports that say that this B I I disease is
causing some of her other illnesses, so it'll be interesting
to see if her plight goes that way. You know,
(15:17):
I think families are comprised of all sorts of people.
We have a family. You know, you've become my partner,
my advocate, my close, close friend, and really the person
who helped me get through this. So I think you know,
to kind of wrap this up and bring it to
close as the patient, as the friend, you were able
to talk to these doctors in a way that was,
(15:37):
like you said, very common, rational. And so what would
you recommend to people when they're communicating with their doctor
in terms of teaching them how to treat them and
commanding the respect that, like you said, as patients we deserve,
but also getting the response that a white attorney can
get from a doctor at his alma mater. Well, patients
have to stand up for themselves. That's first and foremost.
(16:00):
The days of letting doctors tell you what to do
and how they're going to treat you and what they're
going to give you, those days are over. You have
to be your own advocate, and as you're doing that,
you have to bring in other people who can help
you also work through the system. It's a very difficult system,
and you have to work it and you have to
(16:21):
work it hard because it's all about you and your
health and your family and your life, and that's the
only thing that's important in this case, and so you
have to stand up for yourself. That's what that would
be my my key, my key takeaway here, Well, that's
what we're asking for. I think with every woman who
I meet when I share with them the costs these
(16:42):
implants have had. Overall economic impact of this is emotional, financial, physical,
in spiritual, because you start to lose faith in organizations
and authority figures that you thought you could trust, and
then what you learn is that we don't know what
we don't know. The friends and family that have supported
me through this gave me the environment to not be okay.
As women, we have to accept and announced that we're
(17:04):
not okay and also now that we deserve to be
okay and to fight for that place. And I think, Stephen,
you've been such a great help and supporter, and I
wish all of my fellow victims and patients and survivors
have the same support because it's key. And now you're
not alone, as we all say, you're not alone. Y,
thank you, thank you. Fine, Kristen, you are very lucky
(17:39):
to have friends and advocates that are so supportive that
you can count on when things get rough. Absolutely, Stephen
is a true renaissance man improves that advocates are angels
and key to helping us get diagnosed, emotionally, cope with
what we're going through, and are ultimately there to help
make sure your rights are protected well. Next, we're going
to meet two people who have a story we wish
(18:00):
we didn't have to share, Randy and Bonnie Shane, or
Stacy's mom and brother, and we will be speaking with
them on what is the anniversary of her passing. This
is a difficult conversation for me to have because Stacy
is someone who I met early on in my BII
journey in a chat room before her passing, and she
(18:20):
was such a shining light of hope when I was
personally in such a dark space. And the work that
her family has done too since she passed to share
her story to raise awareness and use their pain is
fuel has literally helped to save other women's lives and
is actually how I came to know them, and I
hope sharing their story helps them help more women and
(18:42):
honors Stacy's final request, which was to use her story
to make sure other women didn't have to suffer. First,
and foremost, I want to thank you both for joining
when I tell people that you know, our breasts are
killing us and it causes all these secondary issues. A
lot of things come up, and so you guys have
(19:03):
been not only through this, but you've had the worst
outcome with it. And I wanted to give you a
chance to first and foremost tell the listeners about Stacy
what you guys experienced. And then I'd love to, you know,
jump in and talk about the book and some action items,
but really I want them to get to know Stacy
and her family because you really have done an amazing
(19:23):
thing to raise awareness, share her story, and make sure
that nobody forgets b I I is absolutely real. I
guess that I could say that I always felt that
I didn't hit the white doctors, and then when I
started going to the major hospitals, I figured I'd meet
them there. But Dr Cole told me she worked at
(19:46):
one of the major hospitals with with John Wpkins and
they didn't believe in it at all. So I really
was banking my head against the wall at even the
major hospitals. So you have a daughter who is sick.
Did Stacy when did she start to suspect it was
her implants? She had a lot of weird things going on.
(20:06):
I remember I was at her house and she was
talking about eating something that she felt was coming back
up through her through her nose, noodles. She was saying,
I'm like, so there's there's noodles coming through my nose.
I don't want to like, what are you talking about? Noodles?
So it's just the weirdest feeling. Then then she thought
that she had a LSUM. She was getting, you know,
all types of tests for a l S and then
(20:28):
she just started to research and then she found this
community and then, uh, you know that's she was the
one that found Dr Coleb herself, trying to find someone
who believed in this to be able to guide her
um on the right path. Anyone other than Dr Coleb.
They just did not believe her. They thought that she
was crazy. They wanted to give her antidepressants. Every single
doctor she went to, she would get her hopes up
(20:51):
for the next doctor that she would see and only
be let down, you know by that that doctor. And
you know it came to appointment She's like, I'm I'm
just never going to get better because no one wants
to help. So you guys sound like you were obviously
an amazing support group. Do you mind sharing Randy and
Bonnie with the listeners a bit about Stacy as person
because she really was just a really strong, amazing mother, daughter, friend, well,
(21:15):
all all the above. I mean at her funeral they
were over four people, so that that shows how many
lives that she touched. There's no one, no one else
like her, no one's similar, and it was it was
a very very big boss for us, to say the least.
When for our listeners. Unfortunately, Stacy passed in and one
(21:36):
of the things that was, you know, meeting you, Randy,
when you talked about this um to take a step
back with the illness. You said that you were going
to her house. She were saying how she was st struggling.
Do you mind sharing with everybody? Unfortunately what you guys
had to go through with Stacy and what happened, because
I think it's so unbelievable to most, but it's not
(21:57):
only true, it's horrendous. The worst thing that we did
was to give her that that spinal tap. She thought
she had a LS and she wanted to know her
neurologists said to meet him at the ear and he
didn't show up. He had an emergency and he instructed
(22:17):
the off position to do it. Now I wasn't there
with her. I would have never have allowed that, never,
and it was a botched spinal tap, and she developed
head pain that never ever went away. I even took
her down to North Carolina the Duke to try to
(22:38):
close up the holes she felt. She felt that was
what brought silicone rand plants that were roaming around her
body straight up to her brain because in her head,
she there was no way that she was going to
get better because the all the chemicals were shot up
to her brain. And we tried everything everything to get
(22:59):
those at the body. The only way we learned about
this disease is all talking, because my doctor is never
going to know what your doctor knows, what the other
doctor knows. Someone going through what we call head pain
from a servical spinal fluid leak is the most painful
thing I've had. And here's the irony. It was my
CSF leak that made them say it might be your implants.
(23:21):
Prior to that, they kept saying, we have no idea
what it is. And it was one doctor so with
Stacy was going through and I also heard you say
they said she's going to the emergency room, she's going
to all different sides of the medical system, which had
to be exhausting for her. That was just the beginning.
I mean, that was where it all started. Well, what
what I learned um halfway through my cousin, who is
(23:44):
a physician in California, said, have you a physician right up,
a belief synopsis of what you're going through and take
that with you so that they see it from a
physician to a physician and a whole more weight. It
doesn't make you look like you have all kinds of
things going on long in your head. So we did that,
(24:08):
not that anybody was able to help up even with that.
So going back to your question about did they did
their rupture, they bled, They bled into her tissue. They bled,
and that's how it got into her body. But the laboratory,
the laboratory was named. Dr Lay said that they were
the worst implants he's ever seen, and he's seen many.
(24:32):
Body and Randy have not only been out publicly talking
and being so brave to discuss with people what b
I I S and what it is and how it
happens potentially, but also when I read the book, a
mother's nightmare dealing with b I in the opiate crisis.
In the first line of it is, if you're reading this,
then I didn't make it. And you asked me prior
(24:54):
to recording why I did this podcast, and that is
exactly why. And I think being able to feature you
both and let you talk about Stacy, this wasn't a
lack of strategy. It wasn't a lack of determination. Do
you mind sharing with the listeners how much of a
lack of understanding it was between these doctors, et cetera.
(25:14):
She went to the top hospitals in the country. When
she went to the top doctors, and because it's not
an agreed upon illness that doctors understand, and there's no
money for research into this illness, so doctors get scared
about what they don't know, so if they try to
(25:34):
treat symptoms, but they don't try to treat the root cause.
And especially with something like this where there's so much
money in the implant industry, where you know, lobbyists or
quieting down doctors that want to help. And this is
where Stacy was caught in the middle of all this,
where nobody knew how to help her, and she was
in so much pain that she couldn't even treat her
pain so like it was like it was like getting
(25:56):
attack from both sides. It's like I'm trying to treat
one thing, but on the other side of the coin,
I'm in pain, and how do I stop my pain?
And she always said that her pain meds would help
her body pain, but nothing was helping her head pain.
She's like, it felt it feels like someone is taking
an ax and just just hitting me in the head
NonStop all day long. What was your experience watching Stacy
(26:20):
go through what she went through? It was it was very,
very difficult because she became a different person. She she
didn't have that humor. Really, she was withdrawing away from
people she knew who she was, and she saw herself
being someone completely different. And that's what bothered her the most.
(26:40):
For her kids, I don't want my kids to remember
me like this. I want my kids to remember me
as the fund Stacy, the one that would play. If
you go over her Facebook, you'll see five million videos
of her playing with her kids. And she even did
that through all the pain. You know, she did it
because she wanted them to remember her a certain way.
(27:00):
So if by her not able to do the things
that she used to do was the thing that crushed
her the most. Isn't it horrible how this experience turns
into guilt for the victim because as mom, she was
trying to shine through. And like you said, you can
look at the pictures, the videos, the comments, and you
can see how she just stayed so positive. But like
(27:22):
you talked about, there's these private moments that I'm sure
we're terrible. And do you mind sharing a bit about
the book and how that came about, because it's a
pretty powerful piece of work. When like cousin told me
to keep a log for the doctors, Stacy thought it
would be a good idea too, And I had everything
(27:44):
with me still, I still had all the appointments and
names of doctors, so she yes, if I could put
it together, um and possibly make a story. I mean,
the word book didn't come to a little later. It
was just putting every thing that we had together so
that it could be a man who script or possibly
later on. Um. She was just she was trying to
(28:07):
help people. To the last day. It was all about
other people instead of herself, because she had given up
on herself, because everybody else gave up on her, so
she was trying to not give up on everybody else
out there going through the same thing that she's going through.
So she said, my mom, like, I'm gonna start this
and I want you to finish it, and I want
you to get it out to as many people out
there so they can, you know, the ones that have
(28:29):
implants can realize, you know, the dangers of it, and
the ones that are looking to get them, Hopefully they don't.
What you're saying, unfortunately is not uncommon and it impacts
the whole family. And so I don't want to take
you to this awful place, but it sounds like Stacy
had multiple neurological physical and you know she was literally
(28:50):
wasting away. What ended up to share with the listeners,
how did Stacy pass and how how did you guys
get through this? Well? Towards the end, um July was
her birthday, Okay, I took her and all three kids
to Canada and um we went Niagara fold and just
(29:14):
walking up that hill, I saw she was faltering and
that night she developed pneumonia. Of course we didn't know
it was pneumonia. My grandson, the older one, you know,
woke me up and said, mommy's not breathing right, and
we um. I drove home at two o'clock in the morning.
(29:35):
So we drove home, made a home, and I took
her over to the local hospital where she had that
spinal tap. Unfortunately, that was a mistake because as soon
as she got into the hospital and they took all
the tests and she had the double pneumonia, she said,
go out and get my stuff from the car. No
sooner did I come back. Did they knock on her?
(29:57):
So they emptied out all the pain medicine from her body.
So wasn't she wasn't no deing by the way, it was.
She had pneumonia, and she was like this and they
gave her an arcan at this at this hospital, like
she's like and then she's like, what are you doing?
What are you doing? Why are you? Why are you
doing this to me? For maybe ten fifteen minutes to
(30:17):
get gramming all the stuff and canting all this stuff,
and because she was staying over, okay, and then when
she went home, I think she was there for a
week with the pneumonia. She was there for a week
before everybody got no place. We went home and she
was having such bad diarrhea that she asked if her
(30:42):
main doctor, who was her rheumatologist, would write a script
for Regland. As he was signing the the prescriptions, he
never looked at the reguling. The red Land and her
pain medicine collided. He came to my house to pay
(31:02):
a chivical and said, I never would have written it
had I looked at it, because they're not supposed to be.
Why are you telling me that you made a mistake.
So she ended up having like lockjaw. She couldn't like permanently,
like open, like scary face. She went to the to
the local hospital, Jersey Shore Medical Center in Neptune. You know,
(31:25):
she's like, am I going to be like this forever?
And then I got the call the following morning morning
of September six from my dad. But her her boyfriend
at the time, called my parents saying that Stacy was
was unresponsive. The guilt that women feel and what your
daughter went through and being unresponsive, everybody's heartbroke because Stacy
(31:46):
didn't quit. This disease took Stacy. And I think it's
so important for women out there to know that they
didn't do this to themselves. They're not failing their children.
And the greatest thing that's happened out of this bi
movement is that women know they're not alone. And I
just want to honor what Stacy has done to not
only change your lives, but the lives of so many women,
(32:07):
and the bravery of you guys sharing her story has
been not only an inspiration but a life saving journey.
Just thank you for everything you do. And I'm really
sorry this is why we met, but I'm so glad
that I know you both. Thank you, thank you, thank
you so much for having us Christian. What an amazing
(32:31):
and loving family. We should all be that lucky. Absolutely
there and credible people. And for those of you who
want to read Stacy and Bonnie's book, it's actually called
a Mother's Nightmare, My Battle would Breast implant Illness and
the Opiate Crisis. Yeah, we put a link to it
in our resources page on Sick Titties dot com. It's
an absolute must read. So, Chris, meeting these family members
(32:54):
was not only emotional, but also a reminder to me
of how much this disease costs not only us but
those people that we love, our friends and our family
who go through it with us. Well. I think we
learned that although it is difficult, advocates are very necessary
and they want to be there for you. This is
not a burden, but a blessing for those who show
up to support, and they are key to survival. I
(33:18):
know firsthand it's so important to have an advocate who's
not only able to help you in so many ways,
but also just knowing that there's no one way to advocate.
I think what I learned today is that each advocate
has learned some unique strategy that we can all apply,
and a few we saw today we're you know, pretty compelling.
(33:38):
I think we found out about b I I absolutely.
I think for most patients it's other people who discover
b I I from support groups, and they're that critical
person to reach out to the patient and the person
and say, hey, this might be what's ailing you. Yeah.
And also Bonnie, who's such an impressive researcher. Yeah, she
sought out doctors and really worked hard to identify and
(34:01):
find people who were even capable of helping Stacy, and
was persistent in you know, driving her to places that
were far away getting appointments and really went that extra
mile to find resources at a time when they were
really difficult to find. We also learned that advocates must
be very persuasive. Yeah, it's pretty crazy to me, you know,
being their first hand to see how Stephen literally had
(34:24):
to represent me in the hospital and how hard the
Shanes had to work to convince doctors to take stacy. Seriously,
I think what I've learned is that when you're sick,
it's really hard to be an advocate because advocates have
to be diligent. They've got to be articulate, driven, persuasive,
and ultimately lobbyists who get those doctors and experts that
(34:45):
can help us to support us and really not give up.
And they have to be persistent, never give up, trying
to find the answers that is going to give the
b I I patients hope. Yeah. I can tell you
there are many times where I was feeling like there
was no hope, and it was my friends, my daughter
Stephen coming to me and being really clear that we
(35:07):
were not going to give up, that there was going
to be the next step in constantly coming up with
an alternative to giving up. To quote one of my
favorite movies, Never give Up, Never Surrender. When on that note,
I think what we've learned is that for me, just
having people be there, Chris is the key. I think
the most important way to be an effective advocate is
(35:29):
to show up because I think for me, the biggest
gift throughout my journey was the emotional support people gave me,
and their presence was truly what I needed just to
be able to bear this journey. Yeah, I no, I
agree with you. I think like, just be there, just
be there. And I think what we've learned is that
(35:50):
not being alone is everything. And with the amazing friends
and family members that have shown up who have advocated
and supported us, this has turned into a community of
incredible people that are very quickly sharing information, supporting each other.
And I think it's important to honor and recognize that
this journey not only impacts us all, but these advocates
(36:11):
desverve our, honor, our love, our support and recognition because
they are the two heroes in this journey. Together, we
are not alone. Close to the Chest with Kristen and
Christine has been brought to you by b Noble Media
Group and I Heart Radio. A very special thanks to
our guests Stephen Baru and Randy and Bonnie Sheen. Now
(36:34):
I'd like to share some gratitude, a very special thanks
to I Heart Radio, to our Parker and her I
Heart Radio marketing team, and a big big thanks to
our executive producer, Ramsey Yacht. If you or someone you
know would like to know more about breast and plant illness,
please visit sick Titties dot com. That's s I c
(36:54):
K t I T t i e s dot com. Also,
please follow us on Instagram at sick dot tittis and
at b Noble Art that's b n O B l
e A r T. And we would also love to
have you join our Facebook page at b Noble on
B I I and please remember you're not alone. Together
(37:18):
we can beat this. The views and opinions expressed are
solely those of the podcast author or individuals participating in
the podcast, and do not represent the opinions of my
Heart Media or its employees. This podcast should not be
used as medical advice, mental health advice, mental health counseling
or therapy, or as imparting any health care recommendations at all.
(37:39):
Individuals are advised to seek independent medical counseling, advice, and
or therapy from a competent healthcare professional with respect to
any medical condition, mental health issues, health inquiry, or matter,
including matters discussed on this podcast. Close to the Chest
with Kristen and Christine is a production of I Heart
Radio and produced Inner Studios located in Atlanta, Georgia. For
(38:03):
more podcasts from I heart Radio, visit the I heart
Radio app, Apple Podcasts, or wherever you listen to your
favorite shows.
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