iPain Living Winter 2020

2—iPain Living Magazine

Editor
Ken Taylor

Winter 2020 Endometriosis Staff
Is The Female Barby Ingle
4 — Endometriosis Is The Female Word Most Haven’t Heard Of Word Most Haven’t Chris Lavelle
6 — Managing Exercise With Pain Glen Shurtz
11 — Science Behind The FlexPulse System For Pain Management Heard Of Tim Franklin
14— Long-term Effects of Parvo Virus Kenny Evans
18 — Living With Hashimoto’s Thyroiditis pg 4 Consultants
20 — A Rare Voice in Canada Intellectric Productions
22 — Becoming A Better Person Despite Pain
26— Mia St. John—A Champion in the Ring and in Life KB Media
32 — Effectively Managing Preeclampsia in Pregnancy Morthanos, LLC
34 — Cannabis for Pain; Is It Effective?
36 — I No Longer Sweat The Small Stuff Contributors
38 — When Chronic Pain Becomes Too Painful Chrissy Phillips
43— Effects of Physiotherapy Treatment for Chronic Back Pain Christina Chororos
46 — Fighting Battles Christina H Chororos
50 — Hero of Hope Awards 2019 Recap Danielle Turco
54 — Top 50 Rare Disease Advocates of 2020 Dr. William Pawluk, MD, MSc

Frank Rivera
Kayrene (Kay) Mimms

Nancy Laracy
Physio Now
Rachel Hill

Ross McCreery
Scott Sanders

Yolanda Brunson Sarrabo CPT NASM

Photo Credits
pg 27, 28, 30 — Mia St John

pg 29 — Bobby Quillard

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consideration in an upcoming iPain Living

Magazine edition, email
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For comments, questions, or suggestions
please email our content editor at
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Printed in the United States

pg 26 pg 18

Living With

Hashimoto’s Thyroiditis

pg 38

Endometriosis

Is The Female
Word Most

Haven’t Heard Of

By Christina Chororos

Endometriosis. A word most of us medical acronym for the disease Dear Endo, In honor of "Your"
hadn’t heard of until recent years. is…DIE) is typically associated Awareness Month—March, I
In fact, when I was diagnosed with with more severe pain and infertili- thought it would be appropriate to
endometriosis 11-years ago it was ty issues, however, all 3 types are write you a letter. Truth be told, I
so unknown that there were only 5 associated with pain, infertility, had planned on crafting a great
surgeons, nationwide that irregular menstruation and exces- piece of hate mail making you
“specialized” in the disease and sive bleeding. aware of how you have ruined my
spent their careers understanding life and the lives of so many unde-
and excising it. Here is the real tragedy- In patients serving women around the world.
with endometriosis, diagnosis is How you have ravaged our bodies
Endometriosis is a benign gyneco- commonly made 7 to 9 years after with pain, emotionally abused us,
logical disorder that affects the initial pelvic pain presentation. and stripped us of everything that
about10% of women of reproduc- 7 to 9 years - which means, we still makes us women.
tive age – or about 6.5 million have a lot of work to do in terms of
women in the United States. There awareness, advocacy and educa- Then...I thought about it...I think
are 3 types - superficial, ovarian, tion. So, on behalf of the strong we can all agree that this world is
and deep infiltrating endometrio- women who fight against such a brimming with enough hate and
sis. I was diagnosed with deep in- formidable opponent, here is my frankly, the women you've affected
filtrating endometriosis in 2008 at open letter to endometriosis. are anything BUT victims, so why
just 28-years old. DIE (yes, the paint them as such? No, instead, I

4—iPain Living Magazine

wanted to write you a letter to goal is to paralyze us by way of read, "A woman is like a tea bag -
thank you. That's right, I said havoc, terror and pain. you never know how strong she is
thank you. A tough perspective to until she gets in hot water." - Elea-
sometimes keep - especially this What you have gravely underesti- nor Roosevelt
morning, when you woke me up at mated is this, Endo: Despite your
2:30 am aggressively and perpetu- relentless attempts to victim- So, thank you. Thank you for
ally making your presence known - ize, devour and overpower our showing us that we are stronger
my body in pain and making bodies, minds and spirits, despite than we believe. Thank you for
it impossible to fall back to sleep us seemingly appearing weak, bro- allowing us to see our limita-
for the rest of the night. ken and overcome when you first tions and surpass them each and
wage war on our bodies, we are every day we are here. Thank you
In 2008, when I was diagnosed simply taking stock, recalibrat- for sifting out the people in our
with you Endo, specifically, Deep ing, reevaluating... reawakening. lives that weren't strong enough to
Infiltrating Endometriosis, I had no stand by us and blessing us with
idea that your name would hold Though we'd never wish this on the people in our lives who are
such irony. I thought the irony lay anyone or anything, by attempting strong enough to stand with us.
in your medical acronym: DIE - to attack the very being of what Thank you for giving us other
but the truth of the matter makes us women, by attempting to women to draw strength, wisdom
"infiltrating" was where the real suck the life out of the very organ and support from. Thank you for
irony revealed itself. Why you that brings life into this world, you, reminding us of the smallest of
ask? Because you have tried to in- Endo, have chosen the wrong sex things to be grateful for.
filtrate every single part of my be- to prey on.
loved life and spirit. You have This Endometriosis Awareness
worked tirelessly to embed your- We're survivors. Fighters. Over- Month know that you may win a
self in all I once found joy in - my comers. Victors. Life-givers. We few battles, but the women you're
marriage, my subsequent relation- are, woman after all. You have fighting against, and who are
ship, my career and my friendships miscalculated our pliability, our fighting against you... will never
- my plans for becoming a mother, strength, our mental and emotional allow you to win the war. MLXL
my mental and emotional health, intelligence. You have unknowing-
my hobbies, my self-confidence ly and unwittingly empowered us. About the Author: Christina H Cho-
and sadly, even my faith. Bringing us together, reminding us roros, founded Kairos Chronic Pain
of our unbelievable strength, our Coaching in the fall of 2017 after obtain-
However, after years of meeting as terrific wills, our unconditionally ing her Integrative Wellness Life Coach-
many women as I have that are loving and forgiving hearts and our ing certification from the Integrative
"lucky enough" to know you, En- resilient spirits. Wellness Academy. She is a decade-long
do... I have realized it's not person- deep infiltrating endometriosis sufferer,
al - it doesn't matter what type or When I was a little girl, after my speaker and, suicide prevention + chronic
stage you haphazardly choose to parents divorced, my Mom had a pain patient advocate. For more infor-
bestow upon us, your one and only sign hanging in her bathroom that mation about Christina’s credentials or
Kairos Chronic Pain Coaching please
visit, kairoschronicpain.com

International Pain Foundation—5

Managing Exercise With Pain

By Yolanda Brunson Sarrabo CPT NASM

There are 100 million Americans actually accomplished the task in off then when you began. The
dealing with pain. Pain can vary; feeling better. The effort of exer- body is made up of a need to move
sometimes it’s not intense pain, but cise is more than doing a lot of and be active. Exercise can make
rather a discomfort. We tend to repetitions in one sitting; there’s a things better in how one feels.
move along our days with nicks of strategy that should be put in place
discomfort that at times many can’t to help develop a mindful yet con- Sometimes you have to be careful
decipher the differences, or how to cise feel good go to in feeling bet- in the workout you endure, as
get around the inevitable. Though ter. Many people are afraid to some restrictions are necessary in
the go to when we’re not feeling move forward with exercise be- limiting injuries. If the joints to
well for many in the 20 percent is cause of possibly harming them- this engine (body) are not properly
medication that helps curb the in- selves, especially for those with activated then it may trigger addi-
tense or mild pain that arises with more delicate situations, whereas, tional pain. However, movement is
age, chronic illnesses, or other life others are not sure of what they necessary.
adjustments. Though medication should be doing at all when it per-
works for many there is also the tains to exercise. When the ques- My Own Advocate
strong reliance that can take pain tions become too many in how to
into the dependency we may not get the process started, well many After being diagnosed with Multi-
want to create. Though joint pain people fail as the effort is too much ple Myeloma 11 years ago, I knew
varies from osteoporosis, arthritis, to bear. that life couldn’t just end on that
and other bone joint related ail- note. I was fairly active prior to
ments, it’s imperative that an over- Exercise and its this news and wanted to continue
all plan be considered in coping Importance being active along with combining
with it. Though medication is a medication. It has not always been
quick fix, when pain continually Exercise is considered another go easy, but as time went on I was
arises it is deemed necessary to to in managing chronic pain, be- able to strategize a plan that was
think of another strategy to cope. cause of its effectiveness in most fitting for my particular situation.
cases when partnered along with
The thought of exercise tends to any maintenance approach. As all Now, that I’m in remission I have
stress people out as many think cases vary it is always best to run move steadfast on making sure
there’s a huge bit of effort involved through any exercise program with some form of fitness is still in my
and too much to bother when in your doctor; You may go straight new day to day make-up of surviv-
pain. The overall goal is to feel in and fail to note that doing spe- al. One of my biggest inconven-
good and feel as though you’ve cific routines may leave you worst iences has been bone pain, which

6—iPain Living Magazine

is one of the cons of Multiple Mye- forming careful lifts and slight there to do. As for handling ma-
loma. How do I move forward range of motion while you regain chines, it’s okay to ask staff for
when the pain can be stifling at strength is a step. help, and sometimes many other
times? Exercise has actually patrons step in to assist. You may
helped limit my pain by activating Positive Aspect of also find it helpful to take part on
those weakened muscles. Working Exercise While personal trainer specials, where
through exercise is like turning Managing Pain you can work with a trainer to pro-
that old warped basketball running vide you with the attention you
out of air, into that full bouncy Here are some call outs why exer- need to begin you exercise quest.
basketball. Though the mission of cise is a big deal and positive tool
getting fit feels unattainable… it’s in pain management: Machines that allow for a full
not. range of motion may be helpful
• Exercise can build strong such as the elliptical machines,
Managing Pain with muscles that allow movement to the upper
Exercise and lower body all while pulling
• Exercise can increase in core to complete the movements
Chronic pain can be a lot for flexibility of the machine.
many to cope and it’s important in
figuring out what is it that you • Exercise can loosen tight If there’s a an affordability issue
want to accomplish, decide on, muscles that doesn’t allow you to visit a
how do you want to feel? Will it gym that’s fine too, as there are
make sense to do a variety of exer- • Stretching before exercise many online services that will as-
cises or stick to a single routine? helps in prepping the muscles sist you in doing the exercise from
the comfort of your own home.
Let’s start this off in moderation • Exercise helps in improving
and increase the mission. Perhaps balance • Try using 1lb weights for hand
you incorporate weight training rotation motions
and walking in your routine, if you • Exercise can help in control-
have back pain try a slow paced ling weight • Walking is an easy go to for
walk in modules to eventually any and every one can achieve
reach half a mile, 1mi, etc. If you • Exercise can help in increasing
have pain in your elbows or arm, bone strength • Seated exercises that allow for
try slow repetitions when working stability
the area of the arm to strengthen Tools to Consider
these muscles. Manage your pain This pain is manageable with a
with exercise by working muscles The process of stepping into a little extra movement exercise.
that are major contributors to the gym may be another challenge be-
pain. In the case of joint pain, per- cause of various intimidating ob- Yolanda Brunson Sarrabo CPT NASM is
jects around you. You may find the owner of a Chronic Fitness Personal
those in better fit than you are, or Training Boutique Service—When Life
machine apparatus that are confus- Happens.
ing to handle. Don’t worry about
how you look from how others
look just focus on what you’re in

International Pain Foundation—7

8—iPain Living Magazine





Science Behind The FlexPulse System

For Pain Management

With Dr. William Pawluk, MD, MSc

The FlexPulseTM electromagnetic 1000 Hz. Hz (Hertz) is the com- exclusively, selected based on
therapy system is designed using mon technical term that describes their effects on the brainwave fre-
modern Neuroscience and Electro- the pulses per second, also called quency bands through a process
magnetic concepts to provide a the pulse rate. called brainwave entrainment.
variety of mostly individual fre-
quencies to accomplish different Any program or frequency chosen Brainwave entrainment is nothing
stimulation goals, most typically for treatment will have the usually new. Ancient ceremonial chambers
based on understanding brainwave expected basic PEMF biologic ac- were acoustically tuned to specif-
frequency patterns. A major em- tions of any PEMF signal, as well ic brainwave frequencies have
phasis and benefit from using Flex- as the actions on the nervous sys- been found dating back to the
Pulse programs is for neural or tem based on the brainwave fre- Bronze Age, and the ancient
brain stimulation. This is done quency band used. All of the fre- Greeks used flickering sunlight
through a process we have come to quencies in the FlexPulse will shining through a spinning wheel
call Audio Magnetic Entrainment have similar basic biologic actions, to induce altered states. Since the
(AME). At the same time, these and some unique biologic effects 1970’s, a wealth of brainwave en-
pulsed electro magnetic field specific to that frequency. Most of trainment techniques have been
(PEMF) frequencies provide all the the time the frequencies will be developed using computer encod-
other benefits of any other PEMF chosen by a user based on the ex- ed audio beats, strobe lights, or
systems, in terms of healing, ener- pected effects on the particular low-energy electromagnetic fields.
gy enhancement and rebalancing brainwave frequency band, expect-
physiologic tuning and pain reduc- ing that the biologic effects on the Brainwave entrainment has been
tion. rest of the body will otherwise well studied scientifically. One of
take care of themselves. the earliest descriptions of this was
Each of the programs is numbered found from scientific research into
P and then the program number. P1 The frequencies in the FlexPulse the effects of rhythmic light and
is 10 Hz, P2 is 10/100 Hz – alter- have been primari-
nating every minute, P3 is 3 Hz, ly, but not sound stimulation
P4 is 7.8 Hz (the Schumann reso- in the
nance), P5 is 23 Hz, and P6 is
(Continued on page 12)

International Pain Foundation—11

(Continued from page 11) end, our TVs and radios have tuners or parts of the brain, the common-
in them. When we change the sta- ality among them is the frequencies
mid-1930s. Scientists discovered tion in the radio or TV tuner we used. So, frequencies used by stim-
that the electrical rhythms of the expect the tuner to begin to reso- ulation with other technologies
brain, or brainwaves, tended to as- nate in synchrony with the broad- apart from electromagnetic fields
sume the rhythm of a flashing light cast signal frequency. Once the sig- will still have significant stimula-
stimulus. This process was called nal is locked in and refined by the tion overlap between them mecha-
entrainment. For example, when a tuner a clear sound and/or picture is nistically, in particular relating to
strobe light was flashed at a fre- produced. If resonance synchroni- the frequencies used. So, research
quency of 10 Hz into the eyes of a zation does not happen, then the or experience in using specific
person monitored by an electroen- picture will be blurry or the sound stimulation frequencies with sound,
cephalogram (EEG), the EEG pat- will be static noise. The human light, or electrostimulation show
tern tended to fall into a 10 Hz fre- brain, nervous system, and for that significant comparability in reac-
quency. matter all the cells in the body, act tions or even synergies.
like tuners to receive signals from
Various scientists discovered that outside the body. Once the signal is One of the goals of PEMF thera-
such strobe light stimulation could tuned properly, the body begins to py is to stimulate the nervous sys-
have a variety of beneficial effects, resonate synchronously with the tem, in addition to all the other
such as increasing IQ scores, en- signal. Healing PEMFs operate cells and tissues of the body, to pro-
hancing intellectual functioning, with this entraining, signal syn- duce desired health benefits.
greater synchronization between chronization process to perform the
the two hemispheres of the brain, desired actions in the body. Any stable frequency presented to
relaxation, improved sleep, pain the body, especially the brain,
relief, and enhanced immune func- Just as sound and light can produce evokes a cortical brain response.
tion. Since these early studies, a effects on the body through entrain- The brain synchronizes its own nat-
whole new branch of science has ment, so too can electrical stimula- ural dominant brainwave frequency
developed called neuroscience, tion and pulsed electro-magnetic with that of the external stimulus.
which includes neurofeedback. field stimulation. Generally, what- This is called brainwave entrain-
Neurofeedback is based almost ever we can do with electrical stim- ment.
completely on rebalancing the brain ulation can be done better, more
using entrainment techniques. A deeply into tissues and more safely
way to understand entrainment is with PEMF stimulation. PEMF
how radios and TVs work. Each stimulation can be more effective
radio or TV station is assigned a because complete penetration of the
frequency within which it must entire brain can be achieved safely
broadcast its signals. This way the with PEMF signals.
signals from all the different sta-
tions do not overlap. The signals While pulsing sound, light, electri-
are produced by the broadcast sta- cal or electromagnetic fields may
tion transmitters. At the receiving have specific actions on the brain,

12—iPain Living Magazine

Brainwave entrain- single How is all this
ment (aka. brainwave music or frequency; the full spec- relevant to help with pain? All pain
sound) is a method to stimulate trum of brainwave frequencies is affects the brain and results in differ-
the brain into entering a specific always running, all the time. The ent brain states. This is commonly
state (such as relaxation, sleep or dominant frequency determines called centralization. Chronic pain is
alertness) by using a pulsing our mental state – and entrain- very much associated with anxiety,
sound, light, electrical or electro- ment temporarily shifts our men- depressed mood, irritability, memory
magnetic field. The pulses elicit tal state by boosting one frequen- changes, elevated stress responses
the brain’s ‘frequency following’ cy to be louder than the others or and problems with sleep, at the least.
response, encouraging the brain- by increasing the frequency being While treating the area causing pain
waves to align to the frequency of stimulated to the extent desired. may often be sufficient, treating the
a given beat. This ‘frequency fol- brain and improving undesirable as-
lowing’ response of brainwave The frequency tuning of a system sociated brain or emotional states
entrainment can be seen in ac- can be directly determined by may be necessary to provide a better,
tion with those prone to epilepsy. perturbing it and by observing the more comprehensive and stable pain
If a strobe flashes at their seizure rate of the ensuing oscillations, reduction solution. Alpha (10 Hz) –
frequency, the brain will ‘entrain’ the so-called natural frequency. P1 - and theta (7.8 Hz) – P4 - band
to the flashing light resulting in This approach is used, for exam- PEMF stimulation induces relaxation,
a seizure. This technique is ple, in physics, in geology, and improving anxiety and stress respons-
commonly used in clinical neu- also when one tunes a musical es. These two programs also naturally
rology to investigate seizure disor- instrument. Higher intensity reduce the perception of pain. Delta
ders. magnetic stimulation (TMS) (3 Hz) – P3 - band is used to improve
studies (Rosanova) found domi- sleep, and with the FlexPulse can be
This same mechanism is common- nant oscillations in various used on or under a pillow to run all
ly used to induce many different brain areas - alpha-band (8-12 night long. Beta (23 Hz) – P5 - can
brainwave states, such as a theta Hz) in the occipital brain cor- be used to improve alertness and to
band to induce trance, for en- tex, beta-band oscillations (13-20 help elevate mood and improve de-
hanced focus, relaxation, medita- Hz) in the parietal cortex, and pression. Because the FlexPulse is
tion or sleep induction. The brain- fast beta/gamma-band oscillations battery-operated, it can be worn
wave entrainment effectively (21-50 Hz) in the frontal cortex. throughout the day and even be run
pushes most of the brain or the In healthy individuals each area all night long. For more information
entire brain into the desired state. of the brain is normally tuned to see drpawluk.com or flexpulse.com.
oscillate at a characteristic rate.
Brainwave entrainment is a great International Pain Foundation—13
way to lead your mind into states
that you might usually have diffi-
culty reaching, allowing you to
experience what those states feel
like. The brain does not op-
erate in just one

By Nancy Laracy

If anyone had ever told me a be- logical agent for the sudden bar- ticular were just coming to the
nign virus that children often con- rage of debilitating symptoms I forefront.
tract could strike me and change experienced, which included
my life forever, I might have chronic full body joint and muscle Much happened very quickly and I
washed my hands a little more of- pain that within a week had me found myself in hospitals on more
ten! nearly wheelchair bound. My life one occasion and meeting with top
was changed forever. At the time, doctors at the Center for Joint Dis-
Fifth’s disease, otherwise known the devastating effects of Parvo eases in NY and other NY hospi-
as Parvo virus B-19 was the etio- virus B-19 for adult women in par- tals. I was an enigma for them all.

14—iPain Living Magazine

I thought I might run out of crushed but not defeated. I called ine the day when I would get rid
blood with all the tests that were the CDC in Atlanta Georgia and of the pain. I had to wrap my
being done. The term fibromyal- in under a minute two physicians head around the idea that the
gia was thrown out there by a came to the phone and requested pain wasn’t going anywhere and
few doctors, but was disputed by that I send them my blood re- I must learn to manage it.
others due to the high fevers I sults. It seems they were looking
endured. This was almost twenty for people like me in the United In the beginning I tried every
-five years ago when little was States to study. mainstream or holistic treatment.
known about fibromyalgia let When a terrifying reaction to
alone how to treat it. None of the The CDC referred me to a more pain medication sent me to the
current medicine used such as cutting-edge rheumatologist in emergency room, I tossed the
Lyrica, Neuronton and Savella New Jersey and I began receiv- pills in the toilet and started see-
weren’t even in clinical trials yet. ing IV gamma globulin, once a ing a chiropractor and having
It took almost two years before month for six months. At no cost weekly massages, while doing
physicians finally figured out to me. The infusions were ten acupuncture and sleeping on a
what virus was turning my life thousand dollars a treatment at magnetic mattress! I walked on
and my family’s upside down. the time. I learned early in my an underwater treadmill to re-
My children were two and five adult life that your ONE voice lieve pressure on my painful
years old. does matter. Had I not made that joints and strengthen my mus-
call, I am not sure where I would cles. I gave up all sweets and
Through my own perseverance be today. went gluten free. “You may nev-
and strength, which I credit my er be your old self.” Said a pain
iron-willed Irish mother for, I As a result of the infusions, after psychologist. His words angered
came upon research recently six months the virus had stopped me and made me more deter-
published in the Lancet and New replicating in my DNA but I had mined to control my pain and not
England Journal of Medicine developed a connective tissue let it control me.
stating that doctors in Europe disease from to the blows to my
were experimenting with IV immune system over the two A few people criticized me for
Gamma Globulin for acute cases years that I had seemingly an ac- being so consumed with my re-
of Parvo virus. Mine was acute tive case of the virus. Subse- covery, but for the most part I
by anyone’s definition. quently, I developed fibromyal- had a huge support system,
gia. My life became all about which is vitally important. And
I had difficulty convincing my chronic pain. Throughout my en- because I went from a healthy
rheumatologist that I needed this tire body. At times it felt like a type a personality career woman
treatment. It was apparent that thousand knives were piercing and mother of two so quickly to
his ego could not handle the fact my body. The weight of a light so disabled, I never had to live
that I had found cutting edge re- blanket was so painful I slept un- with the stigma chronic pain pa-
search before he did. I was covered. I could no longer imag-
(Continued on page 16)

International Pain Foundation—15

(Continued from page 15) year old, Bunny Boy developed of Pennsylvania that veterinarian
an incurable jaw abscess and thought could actually now cure
tients endure when their pain simultaneously we found out he these aggressive types of ab-
comes on gradually over a long had similar autoimmune disease scesses. She humbly told me that
period of time, so invisibly. as me. What were the chances of she did not know how to do the
that? procedure yet but that she
By a stroke of luck of perhaps thought she might be able to ar-
fate, I found the most effective I went into the same fighter range for Bunny Boy to go into
treatment for my pain. An ador- mode for Bunny Boy that I did the world famous Animal Medi-
able nine-pound red satin rabbit. for myself and he underwent ex- cal Center in NY to be consid-
In the middle of the blizzard of tensive jaw surgery, which was ered for the treatment where
2001 in the northeast, my chil- very risky for a rabbit. As prey they would remove the abscess,
dren and I had a bit of cabin fe- animals, their hearts are weak part of the bone and implant an-
ver. Being an avid skier in my and they succumb to anesthesia tibiotic beads directly into the
previous life without pain, driv- quicker than other animals. They bone that would release slowly
ing in an Armageddon was noth- also give up easily when they over three months. It was cutting
ing out of the ordinary, so off feel pain or are frightened. But edge medicine. Well I found my-
we went to the pet store to get Bunny Boy thrived and went on self in the car at five a.m. the
crickets for our lizard. It was a to become the children’s mas- following morning in the pitch
family emergency. We were out cots for their sports teams, sci- dark, on my way into New York.
of her lettuce as well. In the ence fair subjects and my best
front window of the pet store friend. Bunny Boy was always There was nothing I wouldn't do
was a new litter of adorable bun- able to sense when I was in pain for Bunny Boy. Well, the inter-
nies. The next thing I knew a and he would curl up in my lap view was something the presi-
darling, fuzzy bunny was or on my chest to comfort me. dent of the United States would
wrapped up in my arms and de- At one point he actually nudged receive. In the many years that I
spite the frigid weather, some- the phone over to me in bed had been so sick and visited
thing in me began to melt. It was when I desperately needed to some of the top hospitals in NY,
as if I so somehow sensed all call for help due to a flare up never had a single doctor been
that we would come to mean to that rendered me nearly para- so thorough with me! They
each other in the years ahead. lyzed it seemed. wanted to be sure Bunny Boy
would survive the surgery and
Bunny Boy quickly became a When Bunny Boy's abscess fi- be in one of their medical jour-
beloved member of the family nally returned four years later, nals.
and the third child I very much Dr. Welch had seen a new pro-
wanted, but couldn’t have. Sad- cedure being taught at her con- Bunny Boy underwent the cut-
ly, before he turned only one tinuing education at University ting edge surgery a week later

16—iPain Living Magazine

and thrived, but the post op regi- in the bone. Bunny Boy helped Some of them, such as Science
men was even more extensive save my life figuratively and lit- Daily, Nov. 17 1009, Pain Medi-
than his first surgery as the in- erally. cine January 2012, the Eight-
spection had sadly also spread to eenth Annual Conference of the
his hocks. But my family stepped For those of us suffering with International Society of Anthro-
up to the plate, all playing their chronic pain, getting a pet can zoology and the First Human
critical role in Bunny Boy's re- sound like a lot of extra work Animal Interaction Conference
covery, bringing us all closer as a and energy that we just don’t in Kansas City Missouri, which
family and our love for Bunny have to give anymore. But what are on my website
Boy grew even deeper. Two Bunny Boy taught me was that www.nancylaracy.com.
years later I woke up one day the extra work of caring for a pet
with a small pimple size lump is not a chore; you are actually After our nine-year journey to-
over my eye tooth. Within hours on the receiving end of pet thera- gether, Bunny Boy died in my
my face was swollen to the size py. Pets make us walk to let arms peacefully of nothing more
of a baseball glove. The doctors them out, or in my case, or chase than old age. He left huge paw
thought I might have bone can- them around the Art like a Nas- prints on this world and will al-
cer. Bone cancer! For three days car driver. They make us stretch ways be part of rabbit medicine,
as I waited for the surgery, Bun- to clean their litter pan, brush having been featured in many
ny Boy was camped out wherev- their silky fur or snuggle. They magazines and medical journals.
er I was, sensing something was stand at our feet and wiggle their He taught anyone who crossed
deeply wrong . little noses or binky across the his bunny trail a thing or two
carpet looking to play, which about living life to its fullest. He
It was nothing short of a miracle. requires exercise on our part. was my best friend, and my role
When I woke from the anesthesia What better therapy for fibrom- model for how to live life with
and the doctor told me he had yalgia? Pets also teach us that dignity when one curveball after
implanted antibiotic beads that unconditional love really does another gets thrown in your path.
they had just started using on heal where medical falters, and
humans, the conversation was love prolongs and improves Nancy Laracy is a resident of
incredible and he promptly quality of life. I was so busy car- Franklin Lakes NJ and is married
called the AMC the following ing for Bunny Boy I had little with two grown children. She
day, intrigued that our miracle time to think about my pain, has a B.S. in Business and a mi-
rabbit had played a critical role which was perfect. nor in psychology and was a suc-
in rabbit/human medicine. I was cessful Human Resources Execu-
on methotrexate and Enbrel at There are quite a few of studies tive for 12 years before she had
the time of my surgery so I was available that illustrate the power her two children. She was diag-
quite immunosuppressed and IV of the animal therapy to help nosed with a connective tissue
antibiotics might not have gotten with chronic pain specifically as disease, and fibromyalgia when
rid of the infection that was deep well as other chronic illness. she was 37 years old and she
suffers daily with chronic, often
debilitating pain.

International Pain Foundation—17

Living With
Hashimoto’s Thyroiditis

with Rachel Hill, The Invisible Hypothyroidism

I was diagnosed with thyroid viously life-changing but also or disappeared altogether, includ-
conditions Hashimoto’s Thyroid- very stalling. ing the cramping, aches, pains
itis (an autoimmune disease) and and more. Migraines have de-
Hypothyroidism, in the summer I had a whole mix of emotions creased in frequency from expe-
of 2015. I had been living with surrounding this diagnosis at riencing several a week to just
mounting symptoms of these for such a young age and didn’t once a month.
around five years before the know straight away what it meant
eventual diagnosis. These thyroid for my life or outlook in terms of Other treatments that have helped
conditions have resulted in pain my health. I was confused yet felt me have included raising my de-
for me in the form of: Muscle validation for my symptoms. I ficient levels of Vitamin D and
spasms/cramps/aches and pains, felt frustrated yet relieved to have iron, as both can contribute to
Migraines, foot pain and all over an answer. I definitely grieved pain, taking magnesium supple-
body aches and pains on flare up for a while. ments, and when a migraine still
days. strikes, applying ice packs/cold
The current medication I am on, compresses and using Sumatrip-
After mounting symptoms of a called Armour Thyroid, has been tan from my doctor.
thyroid condition for years, I was hugely beneficial. Unfortunately,
eventually tested for the first time the initial thyroid medication I We need to talk about whichever
at 21-years old and was found to was on (Levothyroxine) did not health condition we live with,
have Hashimoto’s and hypo- work for me, and in fact my thy- openly and honestly, in order to
thyroiditis (autoimmune hypo- roid symptoms and especially the normalize its existence and ef-
thyroidism). pain, only intensified. Once I was fects on those who experience it.
on my current type of medica- I know that in my case, ‘thyroid
Receiving that diagnosis was ob- tion, many symptoms improved condition’ often means ‘an ex-

18—iPain Living Magazine

cuse for being over- EMILYKYLE,MS,RDN,CDN,CLT,HCP
weight’ to a lot of the EMILYKYLENUTRITION.COM
people I talk to, but I
know personally that it International Pain Foundation—19
has affected me and my
life in so many more
ways than just weight
fluctuations.

We can share our stories
and use them to educate
others around us.

I have definitely matured,
as well as developed into
a wiser, stronger version
of who I was all those
years ago. I now know to
listen to my body closely
and that when my pain
flares up, it tends to mean
that something is ‘off’
again. Such as when go-
ing through a flare up
period.

Not every day is hard, but
a lot of days sure aren’t
easy either. However,
that’s OK. Just take each
day in your stride, but
also harness the things
you know do help so that
you can utilize them go-
ing forward.

More can be found at The-
InvisibleHypothyroidism.com
.

In Canada 1 in 12 Canadians has help having to try often forced to leave the prov-
a rare disorder. That equates to 3 and help myself” ince and seek help elsewhere in
million Canadians and their fam- their search for a diagnosis. Even
ilies that will face a debilitating A person diagnosed with rare though a person may be able to
disease that will severely impact disease here in Canada faces the obtain a diagnosis, it doesn’t nec-
their lives. In 2006 I was added same problems not unlike those essarily mean that they will have
to that list of families and life as that others from around the a treatment plan to go along with
I knew it was instantly changed. world are dealing with. These it. Often an individual is left to
I was diagnosed with CRPS include things like misdiagnosis, navigate everything on their
(Complex Regional Pain Syn- unnecessary surgeries, social iso- own. There is very little support
drome) a rare chronic pain condi- lation, financial crisis, and lack for people with rare disease and
tion causing severe chronic pain. of treatment. These might seem often this can leave a person feel-
Nothing could prepare me or the like typical issues that one might ing isolated, lonely, and in des-
rest of my family for what my face but when you’re dealing pair.
journey as a “rare” patient was with a “rare” condition the im-
going to be like. pact that they may have is that “Only 60% of
much more severe. treatments for rare
“All of a sudden it disorders make it
was as if I was Here in Saskatchewan accessing into Canada and
standing alone on a the few resources that we do most get approved
desert island with no have isn’t easy. So patients are up to six years later

20—iPain Living Magazine

than in the U.S. or bringing awareness to the disease “A disease may be
Europe” of which I suffer. This was also rare but hope should
about raising our voices and not be”
Those affected by rare diseases coming together as a rare disease
should have the same access to community. My hope through these very sim-
care and resources as those with ple initiatives is to bring hope to
more common sicknesses. As “The only way in my other rare families not only in
well, there should be support for head that we are Saskatchewan but throughout the
the caregivers and families of going to see change rest of Canada. I have no interest
those affected. Yet not enough is is to be change” in fighting when it comes to what
being done by our government to or what hasn’t been done to help
fund the research and resources Within a couple of months I had fight rare disease. What’s more
that are needed because of the a response from the Premier’s important to me is what we are
relatively small patient popula- office and a letter from him sup- doing in order to move it for-
tion that is affected. When speak- porting the initiative. The next ward.
ing to others in rare communities piece of the puzzle that was so
who share in a lot of the same badly needed here was to find a It’s about partnerships and build-
challenges. I felt compelled to do way to support one another. In ing communities in order to cre-
something about the difficulties talking to other rare patients ate that change. My passion is to
that I was facing, rather than sit throughout our province the same use my experience with rare for
by and do nothing at all. topic kept coming up and that good and in the process to help
was the need for support. So I others in their fight against rare
In my mind “one voice” can contacted a friend with the Rare disease.
make a difference. So one night, Disease Foundation. After much
in the middle of the night, I de- discussion we decided that their Ross McCreery is a patient/ advocate
cided I would write a letter to the model for a Peer-to-Peer adult creating awareness and change for
Premiere of Saskatchewan. I support group would be a good those of us who live with chronic pain.
simply shared my story about fit and that I would take the lead In 2006 he was diagnosed with the rare
living with a rare disease and on this group. This allows for disease called CRPS (Complex Region-
spoke openly towards the chang- patients, caregivers, and their al Pain Syndrome) that has no cure and
es we needed to see within our families to come together in sup- very few treatments for the debilitating
healthcare system. I also took the port of one another. I have also chronic pain of which he suffers. Ross is
opportunity to ask him to declare become an Ambassador for Out- the founder of CRPS Awareness Day in
Nov.2nd as CRPS Awareness Day Run Rare whose goal is to spread Saskatchewan which is an initiative
in the Province of Saskatchewan. awareness for rare disease not designed to educate and raise aware-
only across Canada but around ness for the disease. Ross also sits on
My reasoning behind this wasn’t the world. the board of directors for the Sask Pain
only about recognizing and Foundation in a client/ advocate repre-
sentative roll. Along with these endeav-
ors he works with the Rare Disease
Foundation and has launched their first
Adult Peer-to-Peer Resource Group.

International Pain Foundation—21

Becoming A Better Person Despite Pain

By Frank Rivera

Hello my name is Frank Rivera. I ing during the surgery. The same treatment I was down to 95-98
am a patient advocate for Sarcoido- goes true with my heart, I need a pounds. So, in 2008 I was told I
sis, Parkinson's Disease, and all defibrillator/ pacemaker to stop my was in remission, you can imagine
other rare diseases. Unfortunately, I irregular heartbeat, but I can't get my euphoria at that time. In 2009 I
have been diagnosed with multiple that implanted. Now with this glos- moved back to New York. In 2011,
chronic pain diagnoses. My two sopharyngeal neuralgia is when ei- I had trouble with my IBS where I
major chronic pain Diagnoses are ther a blood vessel, a tumor or my was in so much pain. While they
Advanced Sarcoidosis, in over 90% Sarcoidosis granulomas are press- did an X-Ray, the X-Ray showed
of my body, all except liver and ing against the 9th nerve in the some masses in my lower lobes. I
kidneys, and Parkinson's. brain. The main fix for that is also went over to the cancer center in
surgery. I am not a candidate for Stony Brook University for the bi-
I have multiple other diseases like any surgery at all. opsy. they told me it was
IBS, Diverticulosis, Hyperthyroid- "Sarcoidosis." I had no idea what
ism, and just been diagnosed with The diagnosis process for Sarcoido- that was. So, after going on Google
glossopharyngeal neuralgia, as well sis was a terrifying experience I decided to go to one of the biggest
as uveitis, and cataracts. The Sar- for me and my family. In
coidosis and Parkinson's have been 2004 while living in Flori-
the most complex. A year ago, da I had trouble breathing,
April I was downgraded from walking and heavy fatigue.
chronic to terminal. The reason be-
ing both the Sarcoidosis and Park- I went to the hospital in Florida
inson's have been attacking my and they took an X-Ray which
neurological system at the same showed spots in multiple lobes of
time and during this "turf battle" my lungs. I went to get a biopsy
and was told with the four words
They were blocking my blood ves- you never ever want to hear " You
sels from getting enough oxygen. have Lung Cancer!" So, with that I
You would think that would not be went through an extremely active
a big problem clearing the vessels, chemotherapy and radiation regi-
but due to my Sarcoidosis my men. I started weighing 125
White Blood Cell count has been pounds and by the four years of
extremely high so any type of sur-
gery would have a high risk of dy-

22—iPain Living Magazine

Sarcoidosis clinics in the USA. For the Parkinson's once I was made a resolution that now
Mt, Sinai Manhattan. When I diagnosed in 2016, I have been makes April Sarcoidosis Aware-
went there, they made sure they on Carbidopa- Levodopa has ness Month for ever. I had a
had all of my records even from helped me with my tremors, but proclamation up in the Senate in
Florida. The doctor then showed my brain has been suffering with 2016, but the parties didn't want
me the results of the biopsies in memory loss, and I have had to cross endorse so it has been
2004 and the most recent. They hallucinations. on hold all this time. Between
matched exactly. I have never the work of myself and the Na-
had lung cancer! I went through I have been a patient advocate tional Sarcoidosis Organization,
four years of the worst torture a for 8 years now. When I went to Foundation for Sarcoidosis they
person could go through at the my first RDLA award night I are receiving money for re-
time. was talking to a couple of doc- search.
tors and the head of the NIH at
When I found out I had Sar- the time. They all told me we Absolutely, I have changed as a
coidosis, it was late in the diag- have one of the highest amounts person because of my experi-
nosis process. I already had it in of people in the rare disease ence with chronic pain. I still
75% of my body. You see the field, but we get the least have the drive but I never know
chemotherapy helped the masses amount of money, when they how I am going to feel from day
not grow, but the radiation say the least, they meant not a to day. I have to be more patient
weekend my immune system penny. I thought that was crazy. with my body, and also know
and because of that my white So I set my mission to get the my limitations even when I am
blood cells went into overdrive government involved by first having a good day because it
and it traveled to other parts of raising awareness by making may take me more days to recu-
my body. April Sarcoidosis Awareness. I perate than normal. But on the
was able to get my Town to first good side I met some amazing
Unfortunately, none of the treat- sign the proclamation for Sar- people who I can call my friends
ments have had an extended coidosis Awareness Month, then and rely on. Also, I don't sweat
treatment for me. I have tried all I worked on our county which the small stuff anymore. One
different medicines from Metho- was very happy to help in more last thing is it gave me a purpose
trexate, Prednisone, Plaquenil, ways than just a proclamation. and reason in my life. The main
Remicade, Humira, and IVIG things learned is to be your own
some worked for a small amount They had the health department best advocate. You know your
of time, but then my body went put in their monthly newsletter body better that anyone else. If a
back in total pain and swollen as to all of the doctors in Suffolk doctor doesn't want to listen to
well as heart activity, and neuro- county a new fact about Sar-
logical damage. coidosis for a year. Then NY (Continued on page 25)
State was soon to follow but

International Pain Foundation—23



(Continued from page 23) don't get me wrong I go What is Sarcoidosis
through bouts of depression
you then he shouldn't be your and anxiety. In 2015 I even (pronounced SAR-COY-DOE-SIS)
doctor. contemplated suicide. I was
so close I actually went to the Sarcoidosis is an inflammatory dis-
I also preach a couple of hospital and put myself in a ease characterized by the formation
things to all Sarcoidosis pa- 72-hour watch. I know now I of granulomas—tiny clumps of in-
tients. First, they call it the wouldn't commit suicide. You flammatory cells—in one or more
snowflake disease for a rea- see I learned something after organs of the body. When the im-
son, no two snowflakes are that. I had two choices in life. mune system goes into overdrive and
the exactly the same and the One was to ball up in a corner too many of these clumps form, they
same for Sarcoidosis patients. and let it win or stay strong can interfere with an organ’s struc-
We may have Sarcoidosis in and fight with all I have. I ture and function. When left un-
the same organs but don't chose to fight. My motto is "I checked, chronic inflammation can
have the same symptoms. have Sarcoidosis but it lead to fibrosis, which is the perma-
One last thing, if you get doesn't have me!" nent scarring of organ tissue. This
some other cold or sickness it disorder affects the lungs in approxi-
is not always due to Sarcoido- In the past two years about mately 90% of cases, but it can affect
sis. Sicknesses or diseases 100 Sarcoidosis patients that I almost any organ in the body. De-
happen. They may not have know have died. Out of those spite increasing advances in research,
anything in common. 100, about 30 of them com- sarcoidosis remains difficult to diag-
mitted suicide, mainly due to nose with limited treatment options
First things first Sarcoidosis pain, no support and no out- and no known cure.
has made me a better person. look of a cure. So, with that
I know that sounds crazy for Sarcoidosis of Long Island Disease presentation and severity
me to say even after being has a new mantra "You Are varies widely among patients. In
downgraded from chronically Not Alone!" I will leave this some cases, the disease goes away on
ill to terminally ill. So, you interview on that note. its own. In others, the disease may
must be thinking how am I a not progress clinically but individu-
better person? Easy, I relate Frank Rivera is the President als will still suffer from some symp-
better to people, have more of Sarcoidosis of Long Island. toms that challenge their quality of
empathy towards other people You can read more about life. The rest of patients—up to a
who are sick. It has also made Frank on his blog, lifea- third of people diagnosed with the
me stronger, maybe not phys- sararepatient.blog. More on disease—will require long-term treat-
ically but definitely mentally, the Sarcoidosis of Long Is- ment. Sarcoidosis is considered
land at, sarcoidosisofli.org. chronic in people whose disease re-
mains active for more than 2-5 years;
in this population sarcoidosis can be
debilitating and life-threatening.

International Pain Foundation—25

In 2012, San Francisco's Mia St. important victories, have all come Each time, St. John got up off of
John triumphed in one of the outside of the ring. the canvas after taking the worst
toughest boxing matches of her that mental illness could deliver.
long and successful career. At Ta- Her Toughest She remained determined to take
ble Mountain Casino in Califor- Opponent what mental illness had cost her
nia, she took on the legendary and transform it into something
Christy Martin for the WBC light Mia lives with physical chronic that could help others overcome
middleweight crown, and won. pain conditions including osteoar- the pain.
thritis, she had lived through trau-
Fans of the sport know West Vir- matic brain injuries from partici- The Loss of Her Son
ginia native Christy Martin as a pating in a sport she loves. St.
key figure in the establishment of John faces one of the most dogged November 23, 2014, Mia St. John
women's boxing. Her career has and determined life opponents a and her former husband Kristoff,
been instrumental in boosting the person can face; alcoholism. a star on the hit daytime series
sport’s profile. So when Mia St. The Young and the Restless, lost
John took on Martin in that cru- Alcoholism affects us mentally their son Julian to suicide .
cial fight, she was confronting not and physically. It breaks lives,
just a boxer, but a living legend. whether it emerges in yourself or Julian St. John had endured a life-
in a loved one. St. John has found long battle with mental illness. As
Mia St. John’s grueling win over a herself battling with alcoholism an aspiring artist, he enjoyed nota-
women’s boxing icon won her a and mental illness over and ble successes with his work. His
world championship. However, over. Each time, it took a devas- parents worked to support him in
her toughest battles, and her most tating toll. his struggle to help him both heal

26—iPain Living Magazine

and also to grow. Unfortunately, tion to fight for the cause, saying With mental illness in particular,
at the age of 24, his own bout “My fight for mental health will knowledge does provide power.
with illness took him from his continue. They may not find a Too often, mental illness comes
family and this world. cure in my lifetime, but we can with dangerous misconceptions
try and prevent the loss of another and stigma. Many assume that all
As Mia St. John stated, “the pain beautiful soul.” mentally ill people pose a threat
became too great for him and I to those around them, or are
dare not say he lost the battle - he Julian St. John’s legacy lives on somehow incapable of function-
simply chose to set himself free.” at “Stone Art.” ing normally.

Her son battled with mental ill- At Stone Art Studio, young adults This causes those who suffer from
ness for many years, but only at suffering from mental illness can mental disorders to shy away
the age of 18 was he diagnosed enjoy classes in art, yoga, boxing, from seeking help, and to blame
with schizophrenia. The chronic and more. Those struggling with themselves for not being able to
and often degenerative condition homelessness and addiction issues deal with their problems.
can devastate not only individu- have also found a safe place.
als, but their families as well. Knowledge of the nature of men-
El Saber Es Poder tal illness provides the power to
Approximately 1.2 percent of Knowledge is Power bring sufferers back to healthy
Americans, around 3.2 million and happy lives. When doctors,
people, suffer from this condition. Well before tragedy took her son patients, and loved ones consider
Worldwide, experts estimate that from herself, his father and their mental illness in the same way as
around 77 million people may daughter Paris, Mia St. John used they should a physical illness,
have this disorder. the celebrity gained from five i.e. as a condition needing expert
world boxing championships to treatment and family support, this
St. John added that the loss of her positive effect. approach has the power to truly
son strengthened her determina- spark healing.
Her foundation, El Saber Es
Poder (Knowledge Is Power), The foundation has helped thou-
works to promote mental health. sands in the United States and
St. John’s mother Maria Elena Mexico, and has provided an in-
Socorro Rosales, originally from valuable benefit to the lives of so
the scenic state of Zacatecas in many. In 2008, the foundation
Mexico, raised her children with teamed up with technology com-
this mantra. All three used her pany Micron to deliver 30 com-
values as inspiration in their own puters, internet connections, and
lives, earning college degrees and
enjoying life success. (Continued on page 28)

International Pain Foundation—27

(Continued from page 27) Another Devastating Kristoff St. John, a proud and pri-
Loss vate man, left the facility as quick-
electrical service to the Barrio de la ly as possible, fearing the effect on
Cantera in Zacatecas. This inspired Mental illness for many, especially his reputation from fans and a pub-
the governor of the state to present men, remains a hidden issue. Many lic who lacked knowledge of the
her with an award for her humani- can create an effective front of ap- true impact of serious mental ill-
tarian work and for her contribu- parent stability and happiness that ness.
tions to sporting excellence. hides ever-increasing feelings of
sadness and helplessness. Even the “Kristoff didn’t know much about
Two years later, St. John’s founda- most accomplished of individuals it, which is why he didn’t handle
tion worked to raise awareness and can experience mental illness. his son’s illness very well.” St.
knowledge of mental illness and John explained, “so he blamed
how it affects inner city youth. She Unbeknownst to all but his ex wife, himself for his death. Of course,
teamed up with Lou Pizzaro, one who remained close friends with we told him every day it was not
of the stars of “Operation Repo” to him, and a few others, Kristoff St. his fault. But he just couldn’t live
film a public service announcement John also suffered from bipolar with it.”
on the issue. disorder. Following the death of
his son, he suffered in near silence On February 15, 2019, his own de-
Several months later, partnering with depression and alcoholism. pression and alcoholism overtook
with Congresswoman Grace F. Na- Although prescribed anti-anxiety him. A combination of hyper-
politano and NBA star Ron Artest, medication and medication for the trophic cardiomyopathy and heavy
St. John helped to bring mental ill- bipolar disorder, Kristoff St. John drinking overwhelmed his system
ness training and enhanced aware- increasingly turned to alcohol to and caused a fatal heart attack.
ness of the issue to Santa Fe cope. Fans mourned, and wondered how
Springs. St. John and Artest also a man in the prime of his life and
helped to promote Napolitano’s Mia explained that his own self- career could have been struck
proposed legislation to boost ef- image as a man prevented him down so suddenly.
forts to identify and treat mentally from embracing treatments that
ill school children. could have helped him to relieve (Continued on page 30)
his suffering. In 2017, Kristoff
Even before the twin tragedies that threatened suicide, leading to a 72
struck Mia St. John’s life, she had hour commitment to a mental
already dedicated her efforts to health treatment facility. Even
helping those suffering from men- worse, the media took hold of the
tal illness. You can check out her story. His personal cry for help to
website at miastjohnfounda- those who loved him the most be-
tion.org. came fodder for the tabloid media.

28—iPain Living Magazine

Photo Credit: Bobby Quillard

International Pain Foundation—29

(Continued from page 28) commitment to sobriety, was nor- mental illness, and to expose the
mal for a person experiencing pro- failures of Los Angeles County in
Mia has a new book coming out found grief. Those who cared for their negligent treatment of suffer-
titled Fighting For My Life where her the most knew differently. ers.
she shares what was happening at
the end of his life. Not just with Her loved ones feared that she was As St. John explained, “We all
the depression and the guilt over “at risk of dying myself or taking suffer from something at one
his son, but all the circumstances my life,” they stepped in and point,” she continued. “I just want
surrounding his life and the last checked her into a treatment facili- people to talk about it. And if I
days of his life. There will be no ty. couldn’t talk about my own prob-
more sweeping these challenges lems, then how can I expect any-
under the rug. The book will also Since those with mental illness one else to?”
document the struggles Mia has conditions such as alcoholism, of-
overcome, as she lost 30 years of ten cannot achieve a proper self- Julian’s story is featured and is
sobriety after the tragedies, and appraisal of their own condition, it shining a light on the corruption &
share about her daughter, Paris, as often comes down to family or fraud in government agencies put-
they worked to move forward. friends to intervene to ensure that ting profits over lives. You can
the patient gets the treatment that watch the documentary on the
Turning Heartbreak they need in safe surroundings. mental health system that focuses
Into Healing on Los Angeles County Depart-
For Others Tragedy in her life has not dis- ment of Mental Health & the Cali-
suaded St. John from her mission fornia Department of Health on
The twin pain and grief of her of helping others. In fact, it has YouTube under “Julian” Bobby
son’s suicide and former hus- helped her feel that much more Razak https://youtu.be/_XaYfREqM7Q.
band’s passing overwhelmed St. determined. She speaks openly The documentary does point out
John. It also represented a true about the losses that she and her that this is a challenge Nationwide
teaching moment. She herself be- family have endured, while also not just in California.
lieved that her emotional response, opening up about her own strug-
including falling from her own gles with addiction and mental ill-
ness.

St. John’s Knowledge Is Power
Foundation also continues to help
her live up to her goal to make a
difference. She is a true mental
health hero. Mia has recently pro-
duced a production of a film de-
signed to educate the public about

30—iPain Living Magazine

International Pain Foundation—31

Effectively Managing
Preeclampsia in Pregnancy

By Chrissy Phillips

What Is Preeclampsia?

Formerly called toxemia, preeclampsia is a condition that pregnant women
develop.

It’s marked by high blood pressure in women who haven’t had high blood
pressure before.

Preeclamptic women will have a high level of protein in their urine and
often also have swelling in the feet, legs, and hands causing pain.

Up to 8% of pregnant women Approved mended that the lowest possible
experience preeclampsia, accord- Medication dose is taken. If your preeclamp-
ing to March of Dimes. Although sia is more severe and is causing
the most common symptom of Most women with preeclampsia you considerable pain, then your
preeclampsia is high blood pres- will find that their symptoms dis- doctor will likely recommend
sure, it can also cause pain in the appear within 6 weeks of deliv- you take antihypertensive medi-
abdomen and shoulder, and result ery. However, as it can come on cation designed to lower your
in severe headaches and edema. from the 20-week gestation mark, blood pressure, such as labetalol
To ensure that you’re as comfort- many pregnant women can spend or methyldopa.
able as possible throughout your months trying to deal with the
pregnancy, it’s vital that you associated pain. Mild to moderate Review Your Diet
manage your preeclampsia pain pain can be dealt with by taking
effectively. paracetamol. Multiple studies Once you’ve been diagnosed
have concluded that paracetamol with preeclampsia you should
Take is safe for pregnant mothers to review your diet. It’s crucial that
Pregnancy- consume, although it is recom- you eliminate as much salt as

32—iPain Living Magazine

possible from your diet as it is of the week. A study conducted
responsible for fluid retention in by the University of Oregon
preeclampsia and subsequent found that regular exercise be-
edema, which will cause pain in fore and during pregnancy was
your joints. You also need to beneficial when high blood
steer clear of foods containing pressure occurred during gesta-
added sugars as research has tion.
shown that these contribute to
preeclampsia and its associated Other studies have concluded
pain. Consuming too much sug- that stretching exercises reduce
ar in pregnancy can also lead to the risk of preeclampsia in at-
gestational diabetes. Gestational risk patients. When your blood
diabetes is a risk factor for pressure is lower, your
preeclampsia and can result in preeclampsia symptoms will be
delivery and health complica- less prevalent and so you’ll ex-
tions, including high-birth- perience less pain. However,
weight and jaundice. So, to before embarking on any physi-
avoid gestational diabetes, you cal activity during pregnancy,
need to stay away from un- you should consult with your
healthy foods and consume as obstetrician who will be able to
many, legumes, fresh fruits and advise whether it’s a safe and
vegetables as possible to keep effective pain-management tool
you and your baby healthy and for your specific circumstances.
pain-free.
Preeclampsia is a serious and
Move More painful condition that affects a
considerable number of preg-
When you’re experiencing nancies each year. Thankfully,
preeclampsia pain and feeling there are effective treatment op-
tired from your pregnancy, it’s tions, including medication,
tempting to forgo exercise and healthy eating, and regular exer-
rest up, but this can be counter- cise that will help you to man-
productive. The American Col- age the pain caused by this con-
lege of Obstetrics and Gynecol- dition. But ultimately, you can
ogists recommends that all preg- rest assured knowing that your
nant women participate in mod- pain will ease within weeks of
erate-intensity physical activity giving birth.
for 20 to 30 minutes most days

International Pain Foundation—33

By Scott Sanders

Pain is one of the most well- look to cannabis. If you’re cu- neuropathic pain as a result of
known — and most debilitat- rious about cannabis for can- chemotherapy, have sensitive
ing — side effects of cancer cer pain management, here’s skin following radiation thera-
and cancer treatment. Cancer what you need to know. py, or even experience phan-
pain can greatly reduce pa- tom pain after losing a breast
tients’ quality of life, which is Pain is so common in cancer or limb.
why pain management is a top patients that it’s considered a
focus of cancer treatment warning sign of cancer. Can- Controlling cancer pain is crit-
teams. Unfortunately, existing cer causes pain when a tumor ical for patients’ quality of
treatment protocol isn’t al- presses on bones, nerves, or life. While mild pain may be
ways adequate to relieve can- organs, or when cancer controlled with over-the-
cer pain. spreads to bone. Cancer treat- counter medications like acet-
ment can also cause pain. Pa- aminophen and NSAIDs, opi-
When cancer pain manage- tients may experience pain at oids are needed for more se-
ment falls short, some patients their surgical site, develop vere cancer pain. However,

34—iPain Living Magazine

some patients are wary of opi- coordination and may also existing studies do show a cor-
oids due to stigma while others cause drowsiness and dizziness. relation between cannabinoid
dislike the side effects, which This could worsen certain side use and improvements in pain,
can include nausea, coordina- effects of cancer treatment. nausea, vomiting, and sleep
tion loss, and drowsiness. For CBD, a cannabis compound problems.
some patients who do take opi- that doesn’t produce a “high,”
oids, it’s not enough to provide has fewer risks than marijuana, There are two pathways by
adequate pain relief. but some users report fatigue, which cannabis reduces pain.
drowsiness, and gastrointestinal
These problems have led some issues when taking CBD, and First, both CBD and THC re-
cancer patients to turn to can- CBD can interact with certain duce inflammation to relieve
nabis for relief. But is cannabis medications. pain associated with surgery,
for cancer pain really safe, ef- radiation, swelling, or muscle
fective, and legal? These side effects mean canna- aches. THC and CBD also in-
bis isn’t right for every cancer fluence nervous system recep-
Cannabis for Can- patient, nor is cannabis legal tors to reduce the strength of
cer: Safe & Legal? everywhere. Cancer patients pain signals that are sent to the
who are interested in medical brain. Through this pathway,
The legal status of cannabis has marijuana or CBD should start cannabis has the potential to
changed so rapidly in recent by researching cannabis laws relieve both inflammatory and
years that it can be hard to keep and familiarizing themselves neuropathic pain.
up. However, there are more with cannabis-related language,
states where consumers can administration methods, and Although cannabis research is
legally buy cannabis products dosages before talking to their still a work in progress, pain
than not. Depending on loca- doctor. has risen to the top reason that
tion, that may mean consumers people seek medical marijuana.
can legally purchase recreation- How Cannabis However, like other medica-
al marijuana, medical marijua- Treats Cancer Pain tions and supplements, cancer
na, or medical CBD products. patients shouldn’t dabble in
Safety and legality concerns cannabis products without talk-
Cannabis is also generally con- aside, does cannabis actually ing to their doctor beforehand.
sidered safe, although that work to relieve cancer pain? As Since cannabis carries a risk of
doesn’t mean it’s risk-free. Ma- the ASCO Post discusses, medication interaction, it
rijuana causes short-term cog- there’s no high-quality scien- should only be added to a treat-
nitive impairment that affects tific evidence to support canna- ment regimen after a doctor’s
users’ thinking, memory, and bis for pain relief. However, careful approval.

International Pain Foundation—35

I NO LONGER SWEAT THE SMALL STUFF

BY DANIELLE TURCO

I was diagnosed with lupus and I had never heard of lupus and had baby and I were going to be ok. 2
antiphospholipid antibody syn- a million questions. She was very days later my husband took us
drome in the winter of the year dismissive and sent me on my home.
2000. way. I spent the rest of my preg-
nancy under the care of her group About 4 days after the birth of my
My road to diagnosis was very and trusted her. That was a mis- son something started to bother
long. I suffered with severe fa- take. By my third trimester I was me in my leg. The doctors sent me
tigue and joint pain throughout rapidly gaining weight, filling up for an ultrasound. They found a
my college years. My parents with fluid and my blood pressure blood clot in my leg. I was told
were constantly taking me to dif- kept rising. The group was con- this was normal after giving birth.
ferent specialists to find a diagno- sistent in telling me, “All of this is I was put on coumadin and
sis. At 21 an autoimmune special- normal and everything will be fi- checked daily to make sure the
ist told us I had chronic fatigue ne.” clot didn’t travel to my heart. At
syndrome and Epstein Barr due to this point I trusted no one and be-
having mono in college. He also 3 weeks before my due date the gan a search for a rheumatologist
said there were no treatments and baby hadn’t moved in hours. He to explain lupus to me and what
I have to learn to cope. So, that is was normally very active so I be- the rest of my life would look
what I did for 6 more years. came concerned. I called the of- like.
fice and they had me come right
I became pregnant at 27 years old over. I saw an OB I had never I found someone amazing upon a
with my son. It was horrible. I seen before. She took one look at friend’s recommendation. He did
was beyond exhausted, every me and knew something was a ton of bloodwork and a very ex-
piece of my body hurt (including wrong. After her evaluation she tensive evaluation at my first visit.
my hair), my balance was terribly told us I was pre eclamptic and He was so kind and understand-
off and I felt so sick. I knew this needed to be induced that day. ing. I was sent home with so
couldn’t be normal. While review- many resources and information
ing my blood work at a routine My delivery was like something to keep me busy until my next vis-
visit my OB very matter-of -factly out of a horror scene. I began to it where we would go over every-
stated, “Oh and you have lupus.” hemorrhage and all hands were on thing. I was like a sponge absorb-
She said they would monitor me, deck. I had never seen so many ing every piece of information I
but everything would be ok and people in a room at one time for could get my hands on.
not to worry. one patient. Thankfully, they con-
trolled the bleeding. My beautiful

36—iPain Living Magazine

At my next visit I received my di- ketogenic/AIP diet. It is now 2 Don’t give up. Keep researching
agnosis, lupus and antiphospholip- years later and my lupus is in re- and find the thing that works for
id antibody syndrome. He ex- mission. you. I have found the best medi-
plained how these diseases have cine is a positive state of mind.
been affecting me for years and I have no symptoms and blood- The minute we fall into pity mode
the roles they played during my work shows no signs of inflamma- is the minute the symptoms begin
pregnancy. Then, he put me on an tion. My doctor cannot confirm or to flare up again. Lupus loves
81mg baby aspirin daily and deny that this way of life has any- stress, don’t give it any! Lean on
Plaquenil. I was not happy about thing to do with my remission, but your family, friends and any sup-
the Plaquenil and refused to take a told me not to change a thing. I port system you have. Keeping my
medication that may or may not feel absolutely fabulous and am lupus to myself was a mistake. I
work. very healthy. My cholesterol and was adding more stress to my life,
blood pressure are perfect! I prac- and that was causing additional
For years, I tried every holistic tice yoga 5 times a week, and most flare-ups. When I finally opened
treatment I could get my hands on. importantly, I function like a nor- up and asked for help it was as if a
I have never been on any medica- mal person. weight was taken off my entire
tions and just did my best to get body. I needed my support system
through my days for my family. I I think people need to start using and they were there.
suffered silently refusing to ever their voice. Whether you are a ce-
let anyone know the pain I was lebrity, millionaire or a regular This disease is terrible. I totally
feeling. In August of 2017 it all person like me, it is time to get the get that. I suffered for so many
went to hell. My family decided to word out. There are so many ways years, but didn’t give up. I re-
move, both of my children were to advocate, but one of the sim- searched and fought until I found
moving on to new schools and my plest is a few posts on Instagram what worked for me. I am aware
husband was beginning a new job. with the proper hashtags. I person- my lupus can come back at any
The stress of all these things began ally have my own blog that I post moment. Until then, I will live my
to take a toll on me and I came on at least 3 times a week, a Face- life to the fullest and I will keep
crashing down. book page, Instagram and Twitter. advocating for all my fellow Lu-
pies to find a cure for this terrible
I began to research, “Diet and lu- I no longer sweat the small stuff. disease.
pus.” From this I found the keto Life is way too precious to waste
diet. I decided to put every minute energy on anything that does not Research everything you can get
of my day into finding out every- bring me happiness. I live every your hands on. If you find some-
thing I could about this way of eat- single day grateful for my body thing ask your doctor. If there is
ing. Every single thing I read men- and mind. Like the song says, no harm in trying it, go for it! You
tioned reducing inflammation and “Life is short, make it sweet.” will never know what might work
more energy. In October of 2017 I for you if you, 1. Don’t know
made the lifestyle change over to a about it and/or 2. Don’t try it.

International Pain Foundation—37

By Christina H Chororos

Chronic pain. Arguably, one, if not, the ductive disease among women- a dis-
most contentious, controversial, divi- ease that the medical world has no
sive, healthcare issue that has plagued known cure for, yet. Finding a solution
our country for a considerable amount to Deep Infiltrating Endometriosis and
of time, now threatens to leave 100 it's byproduct, chronic pain, became
million Americans in the aftermath my "new normal."
fighting a losing battle - or "war," if
you will. I had surgeries with the world's best
and brightest- one of them trained by
In 2008, I was successfully enjoying the founder of the surgical procedure
my late 20's - I was still somewhat of a for the disease. I tried hormone re-
newlywed, building a successful educa- placement therapies, anti-depressants,
tional curriculum sales career, volun- anti-convulsant, anti-anxiety, anti-
teering, and spending time with family inflammatory, and anti-psychotic medi-
and friends. Until, one September day cations. I tried yoga. Drastic diet
when my life came to a screeching halt. changes. Physical therapy. Medita-
An unexpected, constant, excruciating tion. Acupuncture. Praying. Organic-
pain ensued giving way to the diagno- only products. Massage therapy. Talk
sis of a rare form of a common repro- therapy. Support groups. Exercise.

38—iPain Living Magazine

Weight loss. Hot baths. Heating finally faced the fact that I wasn't To exacerbate and complicate the
pads. Cold compresses. MRIs, living - I was (barely) existing. lives of chronic pain sufferers, in
CTs, ultrasounds, Botox shots, an attempt to address the "opioid
etc. And, a smorgasbord of doc- My name is Christina H Chororos epidemic," as of January 2019,
tors each with various specialties. - a decade long chronic pain suf- opioid pain medication is being
ferer, endometriosis survivor, cer- restricted to a morphine milligram
My marriage, family, friends, ca- tified integrative wellness life equivalent of no more than 90
reer, hobbies, and emotional coach, speaker and, suicide pre- MME day. It's important to note
health all suffered at the hand of a vention, and chronic pain patient that these restrictions don't apply
disease that's medical acronym is advocate. Additionally, I am the to patients in active cancer treat-
D.I.E., bizarre, and yet strangely founder of New Jersey's first ex- ment, palliative care, or end-of-
appropriate. After enduring three clusive pain management coach- life care.
surgeries in 3 consecutive years, I ing practice that is changing the
was bedridden, bitter, and feeling way chronic pain is being ap- Now what? What happens to those
immensely burdensome; sadly, a proached in our country. chronic pain sufferers who have
fairly common feeling amongst solely relied upon prescribed opi-
the chronic pain community. Unfortunately, the beginning of ates as their primary pain manage-
my story with chronic pain is all ment coping skill? I genuinely be-
I was convinced things couldn't too familiar within the chronic lieve that the problem isn't neces-
have gotten any worse. However, pain/chronic illness community. sarily the fact that pain medication
in 2011, after three more surger- What is a rarity, is how I fought to is being reduced - it's that pain
ies, my father and previous A.P.L. change my story and how I fight medication is being reduced with-
leukemia survivor, tragically daily to help other chronic pain/ out a proper solution in its
passed away from glioblastoma chronic illness sufferers change place. What we, as a country, are
multiforme brain cancer. Then, in theirs. With the country desperate failing to see is by restricting a
2013, after 8-years of marriage, it to find a viable solution to the primary pain management tech-
too unraveled...with the rest of "great American opioid epidem- nique without the education and
me. The acronym for my disease ic," we have been approaching implementation of healthier ones,
never seemed more relevant; chronic pain/chronic illness incor- we are inadvertently contributing
Gripping anxiety, breathtaking rectly- a bold statement, I know. to an even bigger issue... suicide.
grief, and a deep, dark depression
set in and paralyzed me. The With chronic pain being the num- A recent report by the Centers for
world may have continued, but ber one cause of long-term disa- Disease Control and Prevention,
mine had effectively stopped. bility, we need to admit that what the very agency that vehemently
However, it wasn't until one late we have been doing to manage sought to decrease the availability
February morning in 2013, when I pain hasn't been wildly successful.
(Continued on page 40)

iPain Living Magazine — 39

(Continued from page 39) how to communicate our pain - if ous 12 months.
we don't look to be in pain, how • Those with "other" chronic
of pain medication, documented a much pain can we be in? Con-
disturbing trend in suicides in the versely, if we express too much pain also were more likely than
United States. pain, the assumption is that we are those without such pain to have
doing it for attention or medica- thought about (2.5 times as
"Suicides increased by 24 percent tion. Chronic pain can be an in- likely), planned (3.5 times), and
from 1999 to 2014, and are now credibly lonely and isolating exist- attempted (6.2 times) suicide.
the 10th leading cause of death in ence - an existence that can be-
the country. In 2014, nearly come so unbearable, our commu- Regardless of where you stand on
43,000 Americans committed sui- nity is sadly turning to suicide. the opioid "issue," it is abundantly
cide, over twice the number of clear that creating a standard pro-
deaths that have been linked to A recent population-based study tocol in a chronic pain patient's
opioid overdoses. Most often, sui- used data on nearly 5,700 adults treatment plan, whereby mind-
cides are blamed on depression, representative of the U.S. popula- body techniques are immediately
mental illness, financial problems, tion to investigate pain and sui- implemented in conjunction with
or drug and alcohol abuse. Un- cide. The findings? traditional Western medicine, un-
treated chronic pain is rarely even necessary suffering has the poten-
mentioned. However, in recent • 29% of the subjects had chronic tial to be alleviated.
months, there have been a grow- pain, back or neck pain, fre-
ing number of anecdotal reports quent or severe headaches, or Realistically, though a lovely sen-
of pain patients killing themselves other non-arthritis pain. timent, it is one that is going to
because they can no longer get take time for our medical (and po-
pain medication or find doctors • All of these conditions "were litical) system to acknowledge and
willing to treat them." consistently related to suicidali- execute - so what do you do right
ty," with chronic severe head- now? Where do you begin? How
I know I can safely speak for the aches having the strongest as- do you learn the skills necessary
chronic pain community by saying sociation. to live in a pain-ridden body with
that we often feel forgotten, mis- intense, dark emotions?
understood, criminalized, and cra- • People with chronic headaches
zy. Frustration, devastation, stig- were 4.3 times more likely than First and foremost, if you or
matization, and, desperation are those without such headaches someone you love is contemplat-
sentiments that seem universal. to think about suicide, 4.6 times ing suicide, please know there is
Frequently, we don't even know more likely to plan suicide, and available help. The National Sui-
6.5 times more likely to have cide Prevention Lifeline is a valu-
attempted suicide in the previ-

40—iPain Living Magazine

able, credible, and reliable re- regardless of the name we attach other words, what we focus on
source in the United States and is to it, (i.e., faith, spirituality, reli- expands - so the more we focus
one that is available 24/7. Anyone gion, God, a "Higher Power", and/ on negativity, the more we experi-
in suicidal crisis or emotional dis- or "The Universe") the question ence negativity - conversely, the
tress can contact a counselor via of "why" is answered simply by more we focus on being positive,
live chat by going to suicidepre- saying we need not know "the an- the more positive experiences we
ventionlifeline.org or via phone swer" in order to move forward. can and will have the opportunity
by calling their toll-free number, to enjoy.
800-273-8255. Faith, spirituality and/or religion
teaches us to relinquish control, to Think about all of the very "basic"
For those of you who aren't in im- accept that we can't always rely things we take for granted on a
mediate emotional crisis and are on our own understanding and to daily basis...our eyesight and
curious as to where to begin in believe that all of us are one small hearing, the ability to feel the
developing a healthier skillset to (but essential) piece to a much warm sun on our skin, the sound
manage your chronic pain, below, larger picture - that our life expe- of our child's voice, the uncondi-
are 5 of my most heavily relied rience, our emotional and physical tional love of our family, the
upon self-management techniques pain can all be used for a bigger health we do have, the pain we
I use. meaningful purpose. There is don't feel, the illnesses we aren't
beauty, peace, and reassurance in plagued with. There's a miscon-
Believe In Something that simplicity. ception that being grateful negates
Greater Than the pain that you're feeling; Grate-
Yourself Learn To Be Grateful fulness mitigates it.

Chronic pain begs the question, Gratefulness seems like a ridicu- Please Repeat After
"why?" Our minds are a funny lous concept when your body is Me: Good or Bad;
thing: It will continue to ask being ravaged by pain. Grateful- Nothing Lasts
"why" until we give it an accepta- ness is a learned behavior - and Forever
ble answer. Until then, our minds often, learned behaviors are hard
will cycle through questions like, to learn! Gratefulness, contrary to One of the most influential people
"why did this happen to me? Al- popular belief, does not come nat- in my life taught me this incredi-
ternatively, why was I the one urally for most adults. We must bly simple but incredibly effective
chosen for this?" Why, why, why? continually remind, reset, and re- lesson. When we are suffering in
However, when we believe in direct our brains to see the posi-
something greater than ourselves, tive that surrounds us daily. In (Continued on page 42)

International Pain Foundation—41

(Continued from page 41) epic! In all seriousness, it is en- that says, "Instead of complaining
tirely reasonable to focus on our- that the rose bush is full of thorns,
any kind of pain, our mind con- selves - after all, our bodies are in be happy the thorn bush has ros-
vinces us that there is no end in pain, our lives now have to be es." Both perspectives are correct,
sight, nor will there ever be. The adapted to our new limitations, and both highlight the dichotomy
notion of "forever" is a fallacy; In and it can begin to feel as though of life -however, one perspective
good times, "forever" can give us we are being held emotionally, emphasizes the ugliness that can
a false sense of security and in bad hostage. More so, we begin to feel exist in this life while the other
times, "forever" can be defeating, lonely and misunderstood, which focuses on the beauty.
discouraging and demoralizing. often cause us to, inadvertently
isolate ourselves. Don't know where to start? When
By definition, a "moment" means forming a new perspective, begin
a brief period of time, a point in However, with 100 million Amer- by considering the other side of
time and/or present time. Mo- ican's in chronic pain, I can prom- the situation or contemplating the
ments in life are just that, mo- ise you are not alone. Being bigger picture. Remember that
ments - they come and go - there around others who understood my changing your perspective (on an-
are ebbs and flows - and they can- plight was life-changing for me. If ything) takes time and practice so
not be captured, paused, or recre- you're "sick" of everything chron- be patient with yourself. However,
ated. Reminding yourself of this ic pain, try volunteering at your once you master this skill, I prom-
little fact can help immensely in a local animal shelter, dedicating a ise you will never view life in the
chronic pain sufferers experience - Saturday to helping the homeless same way.
in other words, at it's the most or supporting a cleaner environ-
basic application, a pain level of ment. Keep in mind that volunteer
"8" on a numerical pain scale is opportunities and organizations
not going to have the same inten- aren't always looking for physical
sity every minute of every hour of labor, so don't let that discourage
every day. you before you even begin.

Get Your Mind Change Your
Off You Perspective

When we are struggling with My father and best friend always
chronic pain, it's effortless for us said, "life is all about perspective,"
to throw a fantastic pity party... or and it couldn't be more of the
a few. Frankly, the pity party I truth. Perspective is a funny thing
threw for myself when I was first because we see our perspective as
diagnosed with endometriosis was truth. There is a Chinese Proverb

42—iPain Living Magazine

Effects of Physiotherapy Treatment

for Chronic Back Pain

By Physio Now

If you are currently suffering from times known as modalities, is de- the root cause or source of the pa-
lower back pain, and have been signed to help reduce the pain that tient’s back pain. Interestingly, the
suffering for between two to six the patient is currently experienc- term passive physical therapy was
weeks, then it may be time to ing. When a patient comes to the coined because it is a form of ther-
make an appointment with a phys- clinic with intense back pain, they apy that is actually done or per-
iotherapist. People who suffer are looking for immediate pain formed on the patient.
from acute severe back pain relief, and the physiotherapist may
should also go see a physical ther- use one of several modalities, or a Cold and Heat
apist as soon as possible in order combination of a few, in order to Therapy
to receive near-immediate relief. achieve their goal.
Cold and heat therapy is the most
When you see a physiotherapist For instance, just some of the mo- commonly prescribed modality
they will help you increase your dalities that they may use include and is designed to help reduce
back functionality, reduce the iontophoresis, TENS units, and back inflammation as well as mus-
amount of pain you are in, and ice or heat packs. The physical cle spasms. Also, every patient is
also educate you via a customized therapist will also likely perform different, so the physical therapist
maintenance system that will help an ultrasound to clearly identify will discuss their specific needs
prevent recurring back issues in thoroughly before determining
the future. Here, we will discuss which course of treatment will
the two main components of a work best.
physical therapy system for back
pain sufferers; namely, active For example, some patients may
exercises and passive physical experience more relief from an ice
therapy. massage while others may experi-

Passive Physi- ence greater pain relief via a
cal Therapy form of heat therapy that
incorporates the use of
Passive physical ther- heat packs. In fact,
apy, which is some- both form may be

(Continued on page 44)

International Pain Foundation—43

(Continued from page 43) instance, the physical therapist vere lower back pain, in particu-
may ask the patient to perform lar, should focus on core muscle
alternated in order to optimize stretching exercises on a routine strengthening, as doing so is in-
results. In addition, in most cas- basis. In fact, most physiothera- tegral to obtaining long term re-
es, they are applied for roughly pists agree that patients with lief of lower back pain.
15 minutes, every 2 hours, and lower back pain should stretch
tend to be the most effective dur- their hamstring muscles at least Also, the strengthening exercises
ing the first few days of the pa- once a day. that are prescribed should be
tient’s back pain episode. taught by a physical therapist as
However, some patients may for- they have the training and know-
Iontophoresis get to do them after some time, how to teach their patients how
especially if they only experi- to perform them properly. In oth-
Iontophoresis is a chronic back ence a small amount of pain or er words, simply watching a neo-
pain modality that consists of none whatsoever. The good news phyte perform them on an online
using steroids that are adminis- is that patients can remember to video may not suffice, and may
tered through the patient’s skin. do them by getting into a daily actually be detrimental to the pa-
To do so, the physical therapist routine of one to two stretches tient’s mental and physical
will first apply the steroid onto per day, and an added benefit of health if the person performing
the surface of the skin and then hamstring exercises is that they them is incompetent. As such, it
administer a mild electrical cur- do not take a long time to per- is best to learn how to perform
rent in order to help mobilize or form, so they can be easily be strengthening exercises from a
migrate the steroid so that it pen- incorporated into a patient's reg- physiotherapist or other licensed
etrates the epidermis. Further- ular fitness routine or regimen. and qualified medical expert.
more, the steroids that are used
are designed to reduce inflamma- Strengthening Aerobic
tion in the primary area that is Exercises for the Conditioning
causing the most back pain for Back
the patient. Those who suffer from long term
A physical therapist may recom- back pain can obtain relief by
Active mend that their patients perform performing low impact aerobics
Physiotherapy certain exercises every other day on a routine basis. Furthermore,
in order to strengthen their back there are several different low
Active physical therapy essen- muscles. For instance, they may impact aerobic exercises that the
tially consists of a combination ask their patients to perform dy- patient can choose from; includ-
of exercises that are designed to namic lumbar stabilization exer- ing, but not limited to, water
rehabilitate the spine of the pa- cises for 15 minutes, every other therapy, walking, swimming, and
tient with back problems. For day. People who suffer from se- bicycling. Ideally, aerobic exer-

44—iPain Living Magazine

cises should be done 3 times per levels with injuries, illness, DISEASE IN
week for roughly half an hour. imbalances and barriers that CANADA
prevent maximal participation
In sum, even patients who have and performance in sport Half of all Canadians
very busy or hectic schedules • Cardio-respiratory Physio- are living with at least
should be able to take the time to therapy: Used to prevent dis- one chronic health
follow a moderate back strength- eases and injuries to the heart problem and 90 per-
ening and pain relief system that and lungs as well as to reha- cent have at least one
amalgamates aerobic condition- bilitate patients with these risk factor for heart
ing, back strengthening and issues disease.
stretching exercises. By doing so, • Geriatrics: The treatment of One in 4 Canadians
most patients will experience issues associated with com- are affected with lung
long term relief of back pain and mon conditions related to ag- -related disease and
other back-related ailments or ing including osteoporosis, there are 50K strokes
conditions. arthritis, Alzheimer's disease, in Canada each year.
cancer, joint and hip replace- Four out of 5 Canadi-
Types of ment, etc. ans are suffering from
Physiotherapy • Pediatrics: Assessment and lower back pain and
treatment of children with 11M musculoskeletal
Physiotherapists use a wide vari- developmental, neurological disorders are reported
ety of techniques including: and growth-related conditions each year.
with consideration to the Rehabilitation physio-
• Orthopedics: Used to treat unique needs, anatomy and therapy offers treat-
injuries or disorders of the biomechanics of children ment solutions to help
skeletal system and associat- from birth until full growth. Canadians avoid the
ed muscles, joints and liga- effects of chronic dis-
ments PhysioNow www.physionow.ca ease, pain, injury and
provides high quality rehabilita- aging.
• Neurology: Based on exer- tion services including Regis-
cises to restore motor func- tered Physiotherapy, Registered International Pain Foundation—45
tion by overcoming motor Massage Therapy, Concussion
deficits and improving motor Treatment, Vestibular Rehabilita-
patterns tion, Pelvic Floor Physiotherapy,
Acupuncture, Custom Knee Brac-
• Palliative Care: Specialty ing, Sports Bracing, Motor Vehi-
care to support health for cle Accident Treatment, and
those with cancer and other Workplace Injury Treatment.
non-malignant diseases

• Sports Rehab: Assists peo-
ple of all ages and mobility

FIGHTING BATTLES

By Kayrene (Kay) Mimms

It’s 5:30am. The pain along the K’s Hope for a Cure, and enjoyed
right side of my body – neck, a family cruise to Alaska. In July,
shoulder, upper arm, thigh, and my husband, Cecil, and I studied
knee - is bad enough to jolt me out genealogy at the Midwest African
of a sound sleep. This is the third American Genealogical Institute in
time I’ve been awakened since Indiana and attended my family
midnight. The first and second reunion in North Carolina. In Au-
times I woke up, I thought it was gust, we attended Cecil’s family
just to use the bathroom. After ex- reunion in Mississippi. And now,
periencing excruciating pain this I’m working on plans for promot-
time, I realize it woke me up the ing my second book. Bottom line,
other two times as well. I have am I going into a lupus flare like
mild aches most of the time, but the one in 2006?

it’s been a while since I’ve had I consider myself to be a walking
this kind of pain. miracle, a living testimony to
God’s amazing grace, love, and
What’s going on? Is it care. For years, probably my whole
the result of veering life, I have suffered from various
away from my regular symptoms that could have been
related to lupus. My symptoms in-
exercise plan? Is it cluded cold hands and feet and
from the season’s sensitivity to cold (since I can re-
change from sum- member); painful, sore, and swol-
mer to fall? len joints and muscles (since the
Is stress 1960s); low blood count (1960s);
from all extreme redness of eyes (since
my activ- 1975); thyroid condition (since
ities over 1988); itchy and discolored blotch-
the past es on my skin (1990s); blistering
few after short exposure to sun (1990s);
months caus- and chest pain with each deep
ing pain? In breath (1990s).

June, I served as captain
of my lupus walk team,

46—iPain Living Magazine

All those years, doctors did an ex- cruising the Caribbean. After din- After the cruise, I experienced
cellent job of treating my symp- ner, I stood to go to our cabin and even more symptoms: itchy, flaky
toms; however, many times either discovered that I could barely scalp, hair loss, no appetite, and
the old symptoms would reappear, move my legs. I held on to Cecil as extreme fatigue. We were deter-
or I’d get new ones. Doctors sus- we slowly made our way to our mined to find out what was wrong
pected that I had lupus, and I was cabin. The cabin felt extremely with me. Because my primary care
evaluated twice for lupus. Both cold to me, and my joints and mus- physician suspected lupus or sar-
times the results were negative. cles hurt as if I had been hit by a coidosis, he aggressively sought to
Later, I was advised that I didn’t truck. I dressed in layers of night- find an accurate diagnosis. He re-
have enough markers - the magic wear and a heavy robe, took some searched both diseases and thor-
number being four symptoms hap- aspirin, hiked the thermostat up to oughly reviewed my medical his-
pening at the same time - to deter- 80 degrees, put my feet under pil- tory, my symptoms, and my labor-
mine a definite lupus diagnosis. I lows, and got under all the blan- atory results. I finally received a
just continued seeing doctors who kets that were in our cabin. I don’t definite diagnosis - systemic lupus
treated the symptoms as they oc- think I had ever felt so cold or ex- erythematosus (SLE) - lupus. I
curred. Therefore, I was able to perienced such throbbing pain as I didn’t like the lupus diagnosis, but
continue my career in education as did all through that night. I finally I was relieved and hopeful that I
the doctors tried to keep my symp- fell asleep in the wee hours of the would get the help I needed.
toms under control. In 2004, I re- morning and felt better when I
tired after more than thirty years of woke up for the day. During the National Institutes of Health (NIH)
continuous, successful employ- remainder of the cruise, I tried to describes lupus as a chronic (long-
ment. stay as warm as possible. Little lasting), complex, mysterious, un-
did I know at the time that being predictable, and potentially devas-
When I first retired, life was beau- exposed to lots of sun and high tating autoimmune disease that can
tiful. I spent my days being in- temperatures might not have been affect many parts of the body, in-
volved in many activities that I the best thing for me.
was not able to do while working. (Continued on page 48)
I exercised four days a week, had
breakfasts and lunches with my International Pain Foundation—47
retired buddies, took advantage of
free seminars and workshops, par-
ticipated in two book clubs, and
began traveling more.

While on a cruise in November of
2005, I experienced something
very alarming. One night my fami-
ly and I were having dinner while

(Continued from page 47) lems with my lungs and heart. I I had a breathing machine, a pe-
was given a choice of waiting un- ripherally inserted central catheter
cluding the skin, joints, blood, til the next day for my pre sched- or PICC line (a thin, soft, long
blood vessels, heart, lungs, kid- uled appointment or being admit- tube that is inserted into a vein and
neys, central nervous system, and ted into the hospital. I chose to be used for long-term intravenous
brain. NIH goes on to say, admitted to the hospital because antibiotics, medications, and for
“Lupus happens when the immune whatever they administered in the blood draws), a feeding tube, and
system, which normally helps pro- emergency room stopped the pain, a urinary catheter. I was also given
tect the body from infection and and I felt better than I had any massive doses of prednisone. Ex-
disease, attacks its own tissues. time over the past several months. pectations for me to live were dim.
This attack causes inflammation In April, I was finally able to
and, in some cases, permanent tis- Very early the next day, I experi- breath without the ventilator and
sue damage.” enced acute respiratory distress, eat without the feeding tube.
coughing up blood, loss of con- Thanks to God, my husband,
My primary care physician re- sciousness, hypotension, and pre- daughters, family, friends, physi-
ferred me to a rheumatologist who sumed seizure. The medical staff cians, and other medical person-
specialized in the care of lupus ordered a respiratory code nel, I survived a near-death situa-
patients. However, before my (breathing and possible airway tion.
scheduled appointment, my symp- blockage emergency), blood type
toms of extreme pain in my joints and cross for transfusion, intuba- My next battles involved stabiliz-
and muscles to the point where I tion (insertion of a tube in the air- ing the lupus, learning to walk and
could barely walk, nausea, and way to assist in breathing), and talk again, and maintaining treat-
productive coughing worsened. sedation. I remained in Intensive ment for my high blood pressure,
One weekend, things became so Care Unit (ICU), intermittently thyroid condition, and allergies.
bad that I decided to seek help in a intubated and sedated, for 65 days.
hospital emergency room (ER) My treatment plan for stabilizing
where attendants discovered prob- the lupus included six rounds of
Cytoxan (chemotherapy), reduced
doses of prednisone, and later on
hydroxychloroquine (Plaquenil). I
learned to walk and talk again dur-
ing three weeks of intensive occu-
pational, physical, and speech
therapy as an in-patient. There
were also months of in-home and
out patient physical and speech
therapy. First, I was wheelchair
bound; then, I could use the walk-

48—iPain Living Magazine

er. Finally in October 2006, I only sioned myself asking people to the book was written to help raise
had to use a cane to walk. Now, I donate to a cause, doing radio and awareness, broaden knowledge,
seldom use the cane, but it’s usual- newspaper interviews, speaking encourage understanding and com-
ly accessible, just in case I need it. about my personal medical condi- passion, improve provider/patient
Medications used to treat my other tion, or writing books. Yet, after communication and relationships,
health issues included: amlodipine, my condition stabilized, Cecil and and promote research. I’ve just
azelastine, calcium, hydrochloro- I began working toward increasing published my second book -
thiazide, laratadine, latanoprost, lupus awareness and raising funds Fighting Lupus Battles – Living,
levothyroxine, losartan, metopro- to support the lupus community. Hoping, Searching, Climbing, Re-
lol, pantoprazole, potassium, Our volunteer work includes par- searching for the Cure. It includes
pravastatin, and vitamin D. I still ticipating in area support groups, updates and stories from more lu-
follow this medication regimen to speaking at meetings of local or- pus patients and information about
this day and have not had a major ganizations and churches, and rep- lupus research.
flare like the one in 2006. resenting various lupus organiza-
tions, mainly the Lupus Society of Today, my condition is fairly sta-
After recovering the BIG 2006 Illinois (LSI), at various health ble. I awake each day being thank-
flare, I decided that I needed to fairs. We also serve on the LSI- ful to God for three main reasons:
find ways to manage the lupus. sponsored Southern Suburbs Illi- I am still alive; I can usually func-
Thank God I already had a solid nois Lupus Walk Committee, tion independently; and I have lov-
support system of family, friends, which hosts a walk during or after ing, caring family members and
health care professionals, and faith May’s Lupus Awareness Month. I friends who support me. Even
-based groups. I also joined a lu- am the Captain of team K’s Hope though I have painful and sore
pus support group. I was on a mis- for a Cure. Now I find it fairly joints and find it difficult to walk
sion to educate myself about the easy to talk to people, especially sometimes; even though my voice
disease and be involved with my about lupus. is raspy and I am not able to sing
treatment. I learned to do the fol- like I used to; even though I still
lowing: pay close attention to my I tell about my struggles, fears, have a mild productive cough;
body, mind and spirit; develop ap- losses, and victories in my first even though I fatigue easily; even
propriate programs for exercise, book - Fighting Lupus Battles – though I forget or may not fully
relaxation, and meditation; follow Hope for a Cure. The book in- understand things at times; even
guidelines for healthy eating; and cludes more than twenty true sto- though I second-guess most things
stay involved in social activities ries about real people who are liv- I do; even though I have to take
while operating within my limita- ing with the effects of this mysteri- lots of medications, I am still alive
tions. ous and unpredictable disease and learning to live with lupus in a
called lupus. With medical com- positive and productive way. I try
I am a very reserved and quiet per- mentary from two of my doctors, to do what I can to be as healthy as
son, at least I used to be. Before as well as general educational in- possible, and I leave the rest to
my lupus diagnosis, I never envi- formation about the lupus disease, God.

International Pain Foundation—49

International Pain Foundation
presents Hero of Hope Awards
annually. Celebrating our 13-year anni-
versary we have 5 award categories; The
Nerve to Be Heard, Corporate; Caregiver; Media-
Journalist and Patient Advocacy, recognizing excep-
tional winners who have demonstrated outstanding commit-
ment to assisting and advocating for people with chronic pain
diseases. Nominations were solicited from the pain community of
those who are making significant contributions within the field of re-
search, education, awareness, or patient assistance for each category. Finalists
were then chosen from the nominations by the International Pain Foundation board
of directors and collaborative and hero partners. Winners were chosen by public vote.
This was our third year having the public choose the winners and more than 33,500 pub-
lic votes were cast.

The award Winners were honored live at Comic Pain Relief show on November 15, 2019 in Los
Angeles, CA The show entertainment included National touring comedian Tommy Savitt with the
Tommy Lama Experience. Opening comedian, Daniel G. Garza and Emcee Bunky Miller. The event
was held at the UCLA Luskin Hotel. The award winners were recognized in the event program as well as
receiving an award trophy during the presentation. Comic Pain Relief is hosted by International Pain
Foundation. Thank you to all our 2019 award nominees, finalists and winners for all you do to put a spot-
light on chronic pain diseases.

2019 HERO OF HOPE FINALISTS FOR EACH CATEGORY INCLUDED:

MEDIA-JOURNALIST – Megan Roche; My Paper Online, Citrus Pie Media; On A Scale of 1 to 10, Gayle Anderson;
KTLA Los Angeles, George Knapp; CBS TV Las Vegas, Pat Anson; Pain New Network

PATIENT ADVOCACY – Daniel G. Garza, Teresa Wright-Johnson, Shane Schulz, Ross McCreery, Donnie Hogan
THE NERVE TO BE HEARD – Kevin Schlehuber, Sarah Hyland, Tichina Arnold, Cynthia Germanotta, Josh Blue

CAREGIVER – John Garrett, Christian Ramirez, Dr. Forest Tennant, Dr Terri Lewis, Gayle Taylor-Ford
CORPORATE SUPPORT – HealtheVoices by Janssen, WEGO Health, AppliedVR, Avacen, Quell

50—iPain Living Magazine