Intro
[Music]
introduce yourself
good morning manny my name is tracy
alexis i hold a phd
in organizational and industrial
psychology and i’ve used that extensive
background and research qualifications
to write my book
interstitial cystitis a personal journey
of complete
healing you know that’s the whole point
What were your first symptoms
right the point of healthcare stories is
to share our journey hopefully help
others manage through
through their illness and you know what
were your first symptoms and how did you
first suspect
that something was wrong oh that’s a
very good question
um actually about 10 years ago i had a
total bladder
death and the doctors were extremely
perplexed about that i
it was excuse me it was precursed with
some symptoms like urinary frequency
retention painful voiding things of that
nature
but just the sudden stopping of a body
bodily organ was extremely devastating
and it was very challenging for the
doctors to figure out what it was
as it ultimately was a result of a
horrific motor vehicle accident that i
had been
involved in just prior about 14
months and while that doesn’t really
seem like a cause and relationship
from one to the other uh science is just
now learning
about the adverse effects and prolonged
effects of bodily trauma
and how it manifests over time so often
it isn’t quick
as was the case with my uh situation
What led you to believe anything was wrong
and and had you noticed after the
accident any anything that
led you to believe that anything was
wrong no i did not
but right about the same time the
bladder completely shut down and stopped
working
i ended up with a horrific vertigo
and i did have a head trauma and what
the
neurologist and the vestibular
rehabilitation clinic both
suggested was that with the sudden
trauma to the head
we have little hair follicles inside the
ear canal
and the way they explained it to me it’s
analogous to a snow globe
so you know when you shake up a little
snow globe you see the snow swirling
around
and that’s pretty much what happened
with the head trauma the
calcifications on the inner ear hair and
the cochlear had broken off
and started floating around very
violently
in the inner ear and it caused me to
lose balance
have difficulty standing upright made me
nauseous
again just a very unanticipated
onset of these things 14 months after
the auto accident and you did you
What did the vestibular rehabilitation clinic say
connect the two at all
the the bladder and the vertigo
i did not but the vestibular
rehabilitation clinic basically did they
said look anytime the body goes through
such a horrific trauma
as that it cannot be expected that
you’re going to manifest symptoms
immediately
and and in fact that is what happened
these symptoms basically were prolonged
over a 14-month period of time
before they manifested and showed
themselves
What did the doctors say
okay what did the doctors tell you to do
once these
these situations happened well that’s a
another really good question
with the interstitial cystitis it was
extremely difficult to get a diagnosis
of that and it is a chronic pain
dysfunction with frequent urination
burning urination sometimes difficulty
initiating flow
sometimes just difficulty getting that
urine that’s collected in the bladder to
completely empty out
so on and so forth with the vestibular
or the inner ear
it was a little bit more easily treated
they gave me basically a hands-on
toolkit not really any tools in it other
than just some exercises i could do at
home
to help improve the auditory functioning
in the inner ear and and the the toolkit
that they gave you work i mean
are you now okay i am now okay
uh of course as with anything in life
you get out of it
that which you’re willing to invest into
it so if we want to be lazy and
complacent
and just say i’ll deal with the physical
therapy another day
we don’t tend to get better but if we
are very proactive in our own healing
which
for me personally i have to be because
i’m such a poor candidate for
medication i don’t tolerate chemicals
very well
so pretty much my only option is
hands-on
it’s physical therapy it’s vitamin
supplements
minerals herbs things of that nature so
i dove right into the vestibular rehab
exercises
and i also dove into a lot of research
on
vitamins and supplements and herbs and
how to heal my bladder with those
i’m sorry but i know i’m toggling back
and forth between the vestibular and the
bladder they’re really
very disparate issues the way i approach
them is very comfortable
What was life like
it’s all part of the story that you’re
sharing um
could you describe to me before you you
know were able to
to get things under control what was
life like
and how did it impact your day-to-day
living oh my gosh
uh life was basically unlivable
unbearable
as it is with any chronic disease or
chronic pain
onset and there was one point in my life
when i was getting up probably 20 to 25
times
in an eight hour time span at night just
to go to the bathroom
so i wasn’t getting any restful sleep
any of the most
restful sleep which is what they call
rim rapid eye movement
cycle of the sleep pattern and
i genuinely thought about ending my life
just to get away from the pain of course
i do have two children and i told them i
don’t care how horrible your life gets
ending your life is never an option so
it was very
um confounding and confusing for me to
experience that type of very low point
in my life
fortunately i was asked to participate
in a medical focus group on
interstitial cystitis and i did share
that with the medical doctors who had
invited me
as well as other interstitial cystitis
sufferers to participate in that focus
group
and when they heard that not just from
me but also from other ic sufferers
they became very alarmed that this was a
disease
that patients and people who have an
affliction of it
would consider the alternative of not
living
versus living in that pain 24 hours a
day
seven days a week 365 days a year
it took me five years to turn that
situation around it was not quick or
easy but i was determined that i was
going to heal myself
from that situation and in fact today i
am completely symptom-free
Worst day with the pain
so incredible
incredible to hear i’m sorry that you
lived through the five years
you know your worst day with the pain
what was it like
you know getting up in the morning and
going through the day
well it’s interesting because at the
time i was experiencing
the worst of my ic symptoms was when i
i was engaged in my last employment for
someone
other than myself so i worked for a
national non-profit
and no one really understood or could
understand
my boss did have some an acquaintance
that he knew
before he ever met me that had been an
icy sufferer and apparently still had
her eye c but he was a little bit aware
of kind of what the symptoms were and
how it would impact my work
and my daily functioning but nobody
really walks in those shoes but the
individual
who is going through it i literally had
an experience where one of my peer
directors
followed me into the restroom to have a
conversation with me
and i basically just very candidly
turned to her and said unless the
building is on fire
don’t follow me into the restroom
there’s no reason for us to conduct
business in here
you can meet me in my office i can meet
you in your office
this is inappropriate and basically what
i was doing was drawing a boundary
around
personal time that i needed to focus on
emptying my bladder and unless again
manny
someone else has experienced that they
can’t possibly fathom
how challenging it might be for someone
with
these uh medical problems to just
do a simple task like emptying their
bladder
uh so the worst days were you know the
doctors give you a pain scale of zero to
10 with zero
being oh i’m happy and pain free today
and 10 being oh my gosh i want to kill
myself
my pain threshold was set at 12 or 13.
so it was totally off the charts
Taking health into your own hands
and again i’m sorry to you know bring up
this
this past but again this is the point of
the
non-profit is to um you know share these
journeys and hopefully
um folks see a little bit of themselves
in the stories
and so the point that you made earlier
uh you know take their health into their
own hands and are able to manage through
and and hopefully
achieve the outcome that you’ve achieved
um are there other day-to-day activities
outside of work
that were impacted uh you know your
ability
to do do your hobbies and things like
that
yes basically none of those things are
on the radar
the the focus shifts from being
active and active and engaged
participant in life
to just survival mode for you you only
want to do the very bare minimum
just to get the day over with so you can
crawl back in the bed
hopefully take some type of medication
that’s going to help eliminate
some of that pain and just try to
get rested so you can get up and do it
again the next day
it was a very disruptive to a normal
existence and my heart goes out to
anyone
who has chronic pain regardless of what
the name of the disease
is and is associated with that chronic
pain
my heart goes out to them it’s very
humbling to walk in those shoes for four
or five years because you
you begin to have a greater capacity for
empathy
in others and i just want to take a
moment to thank you for your empathy
and understanding and compassion of what
it is to go through this and also your
initiative with a non-profit
to help other individuals i think
ultimately that’s what we all want to do
to share our story so that someone else
can get a golden nugget
and apply it to their life and hopefully
change their lives for the better
so thank you very much for what you’re
doing as well
Treatments that didnt work
thank you again and uh you know i have
my own chronic condition that i just
resolved last year and so i know what
it’s like i used to say i was living a
thirty percent life
and now that’s resolved it’s a lot
better and so uh the opportunity to
share our stories and hopefully inspire
others
is what this is all about so for five
years it sounds like you were
living a pretty hard life what were some
of the things that you tried and were
there things that you tried that didn’t
work
so well
yes the things that i tried that really
didn’t work so well
came from the mainstream medical
providers uh
one of the things that they offered me
was
um phlomax which is not fda approved for
women who have interstitial cystitis but
the most qualified urologist in our
state
uh prescribed that for me and basically
on the one hand he’s handing me the
prescription note and in the next breath
he’s saying by the way if this doesn’t
work i
can’t offer you anything else to help
your bladder work
so that was very very disturbing after
that
i did manage to find a wonderful clinic
that knew all about my condition and
basically i went through 10 months of
recurring urinary tract
infections and the doctor prescribed
pharmaceutical grade antibiotics for me
to take
and basically antibiotics just destroy
our gut and the biome
and our gut there’s no flora or fauna
left
and a healthy gut is extremely important
to
fighting off any disease that nature
throws in our path
so my main objection after i got off the
10 months of antibiotics was to begin
rebuilding my body
i did go through some dietary changes as
well interstitial cystitis sufferers are
extremely sensitive to any type of food
that is high
in an acid content or high in oxalic
acid content
and oxalic acids are basically the way
our bodies
metabolize the foods that we ingest they
are an
output of that metabolization so
just a horrible existence for five years
i wish i could
paint a different picture the next
treatment the next course of treatment
was
a medication called elmeron i took
exactly one pill
and we’re hearing all about the adverse
side effects of elmer on television
right now because there’s a class action
lawsuit
against this product or um blindness
and macular degeneration so i was taking
a pill
to help my bladder but what we’re
finding out now
is that one of the adverse side effects
is blindness
so the two seem very disparate and
disjointed
as many medical side effects are many
medication side effects tend to be very
outside of the box of the area they were
intended to treat i took exactly
one of those pills and i suffered every
adverse side effects on the
label the packaging label and i just
realized that that was not the right
thing for me so that’s when i began the
research that resulted in documenting my
journey
and putting it in a book so that it can
help other people who suffer with ic
and i’ll just mention manny i also had
fibromyalgia
at the same time i was going through i
see as many
interstitial cystitis sufferers tend to
have
those two tend to kind of show up
together don’t know why
but i’m not suffering with either any
longer i’m thankful to say i know that
is wonderful to hear
Working with your doctor
um you know in so it sounds like um
it’s been a or at least it was a
terrible journey
could you talk about some of the uh
changes that you’ve made
since then you mentioned uh you know
working with your doctor
on the alternative paths could you
describe some of those and what worked
yes so i will say that i’m one of the
lucky
people on the planet i have a doctor
who’s known me for 22 years
and the beauty of that is that he
realizes
i only show up when there’s a problem i
am not a malingerer i’m not a pill
shopper
i just want help when there’s a problem
and i would encourage
um your followers and the people who are
listening to
many of the videos that you’re posting
manny if you’ve got a serious problem
only go see your doctor when you cannot
bear it anymore
or you genuinely need intervention
because they’re busy
and they are right now in america
especially
with the government so closely
scrutinizing
everything that doctors do and in fact
even dictating to them how much time
they’re allowed to spend with a patient
who has a certain or specific condition
they are jumping through as many hoops
to live their lives as we’re jumping
through to live hours
so with that said my doctor’s been
wonderful
with me he did give me a referral to a
provider who knew
absolutely nothing about interstitial
cystitis
and that was very alarming because this
was a board-certified urologist who had
never done an installation
in his professional life so that was not
a confidence builder
but that was the only resource that my
primary care physician
knew to refer me to from there
i basically appealed to my insurance
company my hmo ppo and i said look
the policies and the statutes in new
mexico are such that if you’re not
able to provide me with the care the
specialty care that i need
in your network you have an obligation
to refer me
outside the network so i made an appeal
and a grievance and i requested
that the insurance company
refer me back to where i had gotten such
exemplary treatment and they did they
realized
they did not have the expertise in that
area so
those are some of the hurdles that i’ve
had to overcome
my doctor was not personally
very fluent around interstitial cystitis
all he really needed to do was to
provide a referral to a urologist which
he did and again
no no disrespect to him for not having a
larger
network of professionals with whom he
could
have made a referral it was just a
limitation
based on the geography of our state so
it wasn’t anything he could or
really couldn’t do he did the maximum
that he was
able and then beyond that i’m not real
sure if i’ve
responded fully to your question oh no
Health transformation
no i’m so
so what what has um so it sounds like
you’ve had a bit of a health
transformation
from from the five years of suffering uh
what are some of the things that
worked best for you um in your journey
as you manage through
well that’s a really good question too
and that’s why i tried to document it
and write a book about it so i did
develop what i called a basic toolkit
which was to start my morning with a
very strong probiotic to rebuild
that gut health that i mentioned earlier
had been destroyed with the 10 months of
antibiotics
that was first and foremost was to
rebuild my gut
so that i would be in a position to
fight off other illnesses
should something else try to attack your
body
um then my toolkit also
included vitamin c coupled with
a 4200 milligram cranberry fruit extract
and it’s the combination of vitamin c
with the cranberry fruit extract that
creates a hostile environment
in the bladder for bacterial growth so
what that did
was fortify my body so that i would
never have another urinary tract
infection
and most men don’t really experience
urinary tract infections very few do
but for women it tends to be a just an
incessant
problem it’s particularly aggravated by
intercourse and um there are some other
issues that because of our physiology
and how our bodies are built there are
some other
contributing factors that go make us a
little bit more susceptible to a uti
than a man
but with that said it’s such a miserable
feeling
i couldn’t wish that on my worst enemy
so when they
when the urinary clinic mentioned to me
that this was a great combination
to not ever have to suffer with another
uti
i was on that immediately i will say
just
as a caveat some interstitial cystitis
patients will not be able to take the
vitamin c
because it’s highly acidic and that’s
the one thing that creates the burning
sensation when we go to empty our
bladder
um and then the last thing that i added
to that basic tool kit
was at the time it was a tea that was
made by swanson vitamin it was called an
alkaline tea an
apricot alkaline tea but they’ve since
discontinued that
so in my book discovering that they
discontinued the tea
i mentioned that they did replace it
with
ph protector drops which are available
at
swansons.com and they’re very affordable
and it’s just a way to apply in the
water that we drink
so that it doesn’t burn when it comes
out of our bladder
and that’s one of the biggest problems
that most women have
come into with burning urine
it’s highly acidic and that’s one reason
it burns and it can also
burn and traumatize the bladder war just
sitting in our bladder waiting for us to
empty it out
so i found those drops to be very very
helpful
and then one way we can check our bodies
to see how
acidic or alkaline our urine is
is just invest in over-the-counter test
strips
available at any pharmacy cbs walgreens
walmart
and any of those places would carry them
the herbal store would carry them
and you just basically pass it right in
front of your urinary stream when you’re
voiding
and it will it’s got a little color
chart like a rainbow on the back and you
line it up
to the rainbow and that will tell you
exactly how alkaline or acidic your
urine is
those were the basic tools in my tool
kit that help me
progress very far very fast that’s
wonderful and so you mentioned
you know resolve your symptoms very
quickly both the
the pain as well as the vertigo as well
this didn’t do so much with the vertigo
but it certainly could work with the
interstitial cystitis the toolkit
that the vestibular rehab gave me for
the
um the dizziness i was experiencing
that’s what worked well okay some visual
tricks
um to do while i was walking through the
house or outside on the
on a walk very easy little things to
to do okay wonderful wonderful so um
Tracys advice
congratulations
on on managing through it sounds like
you you’ve done wonders for yourself
which is which is incredible
um what kind of advice would you have
for
individuals suffering with institutional
cystitis
um anything that you would recommend
that helped you get through yes
take one day at a time celebrate your
small miracles whatever they may be
sometimes it’s just getting up and
getting out of bed
that’s worth celebrating if that’s an
accomplishment
that you didn’t have the day before so
do celebrate the small victories
be very kind to yourself don’t worry
about what other people
think because very few people are going
to understand this disease
or how limiting it will be for your life
as you navigate through it
and last but not least stay hopeful
you know if you believe in anything
bigger than yourself
get on your knees and pray because
prayer
is powerful and can help us overcome
every obstacle in our life
and if it weren’t for my faith i would
not be healed right now i’m
absolutely convinced of that
wow i know that’s very powerful advice
and very great words
for many folks suffering and so you know
i wanted to
to thank you for sharing your journey um
and congratulations on overcoming the
pain and i
understand it was extremely debilitating
and uh you know for sharing your
solution right uh you know hopefully
your solutions work for someone out
there
and they can overcome as well um so i
wanted to thank you so much for
taking the time today uh your journey um
i’ll take a
few minutes to edit the video maybe i
can remove this background noise we’ll
see
i don’t hear any of it i hope you don’t
hear my heater which just kicked on
oh no not at all not at all so i think
we’re i think we’re in great shape
thank you i did want to thank you tracy
for for sharing your journey
it’s been absolutely a pleasure to learn
from you and to
walk with you as much as we could you
know i have a saying myself
where um you know you don’t
you know you can’t understand anything
unless you experience it yourself
and so so this is kind of uh my way of
reaching
the folks uh to try to understand their
journeys and hopefully
uh collectively we can all improve our
lives which is which is uh
you know kind of the most important
thing we have so thank you so much
and i wish you uh the rest of the great
rest of your day and congratulations
again on all your success
and if you want to talk about your book
again i can make sure that there’s a
good picture
uh for the uh for the website here
wonderful wonderful thank you so much
and um
thank you as well bye-bye
you
