Inside:
Thanks-Giving It Back Fall 2016
The 10th Annual National
Gathering (GX) will take place
in Kansas City, KS on June 9-11,
2017! We will soon have a link
to book your rooms, which are
going to be $119 a night. Host
Hotel is the Marriott Kansas City
Overland Park.
Stay tuned for more information
as we celebrate our tenth
Gathering!
“We are
dedicated to
improving the
lives of adults
living with
arthritis through
personalized
help &
support. “
“Don’t just
survive with
oiiiiiiiii9<
arthritis – Thrive!”
“
“Connection,
Education and
Empowerment.”
Inside:
A Summer Gal’s Fall Transition: Page 2
Jingle Bell Run: Page 2
Fall Harvest Eats: Page 3
National Family Caregivers Month: Page 4
The Power of Giving Back-Coping with Arthritis and Rheumatic Conditions: Page 5
Spotlight on Deb Constien: Page 7
Welcome Fantastic New Arthritis Support Network Leaders: Page 8
Arthritis Support Network Participant Testimonial: Page 10
The 2017 Arthritis Foundation Advocacy Summit: Page 12
Page |2
A Summer Gal’s Fall Transition
By Trina R.V. Wilcox
Trina R.V. Wilcox is an on-air talent,
writer, and columnist with a Bachelor of
Science in Computer Information
Systems from Missouri State University.
She has been a certified fitness
professional through FiTour. Trina is a
two-time Boston Marathon finisher,
former aerobics instructor, and is the director of the JRA
5K. Although Trina has battled rheumatoid arthritis from
childhood into adulthood, she has used a positive focus
to prevail in a variety of ways. She has many interests
including nature, art, and fitness. Trina writes to
encourage and teach others as well as herself.
As a self-proclaimed summer gal, it’s always
difficult to watch the daylight dim a little faster
and feel the crispness in the air more
frequently. When summer leaves, dragging
along a jacket is required, not suggested, while
long strolls with the dogs become quick, swift
steps to let them “do their thing” as fast as
possible. Even though summer must turn to fall,
there’s still a little magic that comes with the
new season. Since it’s coming no matter what,
you might as well have fun and enjoy it.
Like many of you, the colder temperatures
make my joints complain a little bit louder than
when it’s warm and dry outside. Thankfully,
there are still nice days sprinkled throughout
the chillier months and those make my
gratitude list for sure. The themes of being
grateful, giving back, and thankfulness kick
into high-gear during the holiday seasons.
While thankfulness is an effort worth focusing
on year-round, it’s exciting to have it
highlighted and celebrated with a few fall
centered ways of giving back.
Thanksgiving is a big day for expressing our
gratitude. Food, family, and football are the
focus for many people on that specific
Thursday. For me, I like to get up and run the
Turkey Trot 5K. Not only is it a huge gathering of
runners and walkers, it supports a local food
bank. After crossing the finish line, it’s family
time. My mother makes sure to make my
favorite vegan pumpkin pie and a few other
special treats. Then, if the weather is
cooperating, we will leash up the dogs, lace
up our shoes, and take a nice walk in the
beautiful fresh air. It’s a simple day that I
treasure every year. The time with family, going
outside and moving my body is something that
I am extremely grateful to experience.
While there is a great need to give back to
numerous worthy causes, it doesn’t have to be
a grand or laborious gesture. Simply being
grateful for the relationships and possessions
that we have been given is a way to give back
in and of itself. You might be gifted with
physical challenges but with the community
found in Arthritis Support Networks you can turn
it into something you’re thankful for in the
grand scope of it all. ~trvw
There’s Still Time for Fun with the
Jingle Bell Run!
Join us in the fight to cure arthritis by
joining a Jingle Bell Run team! As
many of you know, the Jingle Bell
Run is a fun and festive holiday
themed 5K and even better, the
funds raised benefit arthritis research. Arthritis
Introspective has many Jingle Bell Run teams
throughout the country that you and your
loved ones can join. You don’t have to run, or
even walk, to participate – join a team and
come for the fun or join our virtual team to
show your support if you can’t come to an
event. Rest assured that your donation will go
toward the bold and brave fight for a cure, led
by the Arthritis Foundation. Join a team today!
Page |3
Fall Harvest Eats
By Carolyn Kosanouvong-Walker
Carolyn resides in California and is the
Arthritis Support Network leader in Fresno
County. She was diagnosed with juvenileonset rheumatoid arthritis at 3 years old.
Living with a rheumatic condition for over
40 years has been a physical and
emotional challenge due to severe joint
deformities and chronic pain. Carolyn
enjoys cooking just like her mom! She has a personal
Facebook blog titled, “Happiness is in the Kitchen” where
she shares memories of food, fun, and family.
people who have made positive impacts in
our lives.
I thought it would be a wonderful idea to share
with you my mother’s recipe as passed down
to her by her mother as so many people loved
the uniqueness of this Lao (Laos is my birth
country) dessert. I took her original recipe and
Happy Fall Season to everyone in the Arthritis
community! This is one of my favorite times of
the year as we anticipate and prepare for the
festivities of the upcoming holidays like
Thanksgiving and Christmas. Most of us may
generally feel overwhelmed as we go through
the seasonal changes that come with colder
weather and our bodies are experiencing
more pain than usual. Then there are
emotional and physical stress that comes with
entertaining, shopping, and possibly cooking
for holiday events with family, friends, and
office parties with business associates along
with co-workers.
In the spirit of Thanks-Giving it Back theme of
this edition, I want to take this opportunity to
share with you my family’s journey to America
and the people who have helped us along the
way. My family and I immigrated to the United
States from Southeast Asia in 1979. When we
first arrived to this country, we didn’t know
what Thanksgiving and Christmas were or how
to celebrate these holidays because they are
not part of our ethnic culture. We had an
American family that sponsored us when we
arrived to this country and they taught us the
meaning of giving thanks and how Christmas
was celebrated. It was also our sponsor family
who helped my parents find the best pediatric
rheumatologist in Salt Lake City so that I could
be treated with appropriate healthcare
services. When I reflect on this past journey, I
am reminded of the sacrifices that my parents
made for us to have a better life in this country
and the American families who welcomed us
with open arms and big hearts. I recall my
mother making this Asian yam and sweet
coconut stew during Thanksgiving to share with
a spin to it by adding ingredients that smell
and taste like the fall harvest season! It turns
out that this version is Gluten-Free, Vegan, and
Dairy-Free. 19 fluid oz. can of coconut cream
Sweet Potato & Coconut Dessert Stew
Ingredients
Makes about 4 Servings
6 small sweet potato (pinkish-red skin with
orange flesh), cut up into 1 inch cubes
19 fluid oz. can of coconut cream
1 teaspoon pure vanilla extract
1 teaspoon pumpkin pie spice
¼ cup of organic pure maple syrup
3 tablespoons toasted white sesame seed
Continued on page 4
Page |4
Fall Harvest Eats
Continued from page 3
November is National Family
Caregivers Month
“During National Family Caregivers Month, we
rededicate ourselves to making sure our
selfless caregivers have the support they need
to maintain their well-being and that of those
they love.”~ President Barack Obama on the
Proclamation of National Family Caregivers
Month
Directions
Pour the entire can of coconut cream into the
medium size pot and turn the stove to
medium-high heat. Be careful not to let the
coconut reach boiling point. Add the sweet
potato to the pot along with the vanilla
extract, pumpkin pie spice, and maple syrup.
After cooking for 5 minutes on medium heat,
reduce the heat to low and cover the pot
allowing the sweet potato to gently simmer in
the coconut cream for another 15-18 minutes.
Then turn off the stove and allow the stew to
cool down for at least 5 minutes before serving.
After dishing up the sweet potato stew, sprinkle
the toasted sesame seeds on top to garnish
before serving. Enjoy and Thanks-Giving it
Back!
Looking for Online Support?
Join the thousands of participants within the
Arthritis Foundation Inspire Support
Community
We all know a caregiver or quite a few.
November is a special time when we can think
about these wonderful people and how they
make the world a better place one person at
a time. Let’s take the time to thank them for
giving of themselves so that someone else can
have a nice meal, a bath, clean sheets,
wound care, ice wraps, get to a doctor’s
appointment, be read to, get a hug, or just feel
heard.
The world can be a lonely place for someone
in need of care. There are all sorts of feelings
that come with being or having to be cared
for, but we often don’t consider that the world
can also be a lonely place for caregivers and
that they too have a myriad of feelings to
cope with. Often a kind word, a cup of tea, or
a small gift can go a long way towards
restoring the caregiver. Let’s show our
appreciation for the amazing caregivers in our
lives by telling them just how much they mean
to us and for making the world a better place.
Thank you caregivers!
Page |5
The Power of Giving Back:
Part Seven of the Coping with Arthritis
and Rheumatic Conditions Series
By Sri Ramakumar
Sri Ramakumar is a freelance writer with
a Master of Science (MS) in Family
Studies & Human Development and a
Master of Social Work (MSW). Ms.
Ramakumar will be conducting an
ongoing series of articles related to
coping and thriving with the social and
emotional side of rheumatic and arthritis related
conditions. By following this series, readers can learn
about the social and emotional impact of the disease
along with learning the necessary tools to help deal with
the often overlooked aspects of these condition.
Maximizing the benefits of volunteering means
that it’s important to choose your volunteer
opportunities wisely. Keep in mind the
following factors:
•
•
You make a living by what you get. You make
a life by what you give. -Winston Churchill
Each year, the
holiday season
provides us with the
opportunity to reflect
on not only our
blessings, but also
ways in which we can
give back.
Sometimes, for those
who live with a
rheumatic condition,
this can feel like a shift
in thinking. Life with a
chronic disease can
make one feel more often like the recipient of
assistance, rather than the giver. But, it’s
important to remember that each of us have
talents and abilities that can benefit the world.
And using our talents and abilities not only
benefits those we help, but benefits us as well.
Studies have shown that individuals who
volunteer their time experience higher selfesteem, greater self-respect and lower
depression. It has also been shown to extend
lifespan and physical health among older
adults. Sharing one’s time and talents reminds
us of what we are able to do, and that our
unique abilities are valuable. It is a way to
utilize our existing skill-sets or perhaps develop
new ones.
Engage in things that motivate or inspire
you.
•
It’s important to find an organization or
a cause that excites you or is
particularly meaningful to you. You
should feel a personal connection to
the place you are volunteering and the
work you are doing.
•
You can pick something that is related to
your career (i.e., tutoring students if your
profession is teaching, or volunteering to
help people with financial planning if you
are an accountant).
•
You can volunteer with as support group
leader help in planning the next
Gathering or do some Arthritis
Foundation fundraising events. Your
experiences can serve as expertise,
especially for those who are newly
diagnosed and/or need advice.
•
You can work in a field you have been
passionate about, but haven’t had time
in the past to explore (maybe you love
animals and want to work in an animal
shelter, or you love kids and want to
volunteer in a preschool).
Know how many hours you can commit
and from where you’d like to work.
•
From the outset, you should be clear
about how much time you can
realistically give to volunteering.
Volunteer positions can be a set number
of hours per week or can be projectbased or seasonal for a particular
continued on page 6
Page |6
The Power of Giving Back
Continued from page 5
organization. As you look for volunteer
opportunities keep in mind the amount
of time you are willing and able to
commit.
•
•
The location of volunteer positions can
also vary. Some require you to be on-site
at a particular location. Others may
allow you to work remotely. Be honest
about what will work for you. If
commuting back and forth is
challenging for you, you may want to
opt for a volunteer position that will allow
you to work from home. Additionally,
some positions may allow you to be on
site, but also do some of your projects.
Pick a situation that will work best for you.
Make sure your volunteer position allows for
flexibility and accommodates your needs.
•
•
Flexibility is very important when you
volunteer, especially when you have a
rheumatic condition. During periods of
flare-ups, you may need to cut back
your volunteering hours and take rest.
Other times, when you are feeling good,
you may want to commit more hours.
Be sure to be up front in asking about
the amount of flexibility a volunteer
position provides.
If you are volunteering on-site at an
organization, make sure the physical
structure accommodates your needs.
The following are things to look for:
•
•
•
•
Parking: How far will you have to
walk to get to the building?
Elevators: If you have to go up floors,
is there an elevator available for you
to use, or is the only option stairs?
Desk or Working Space: Is the
physical space where you’ll be
working comfortable for you?
Is it easy to get in and out of? Will
you be in a single position for a long
time that might be uncomfortable? Are
you able to move around?
Volunteering and giving back can bring
meaning and fulfillment in our lives, while
enriching the lives of others. By taking the time
to find the right fit, you can find the volunteer
position that will mean the most to you.
There’s so much that can be done right here in
our arthritis community. Here are few ideas to
get you started.
•
•
•
•
•
Become an Arthritis Foundation Advocate.
Volunteer at local Arthritis Foundation
offices.
Intern with Arthritis Introspective.
Volunteer to write for the Thrive Newsletter.
Become an Arthritis Support Network
Leader in your city or town.
Toolbox Take-Away:
•
•
Being a volunteer has benefits by
increasing positive feelings and lowering
depression.
Choose a volunteer position that works best
for you by considering the following factors:
•
•
•
Engaging in things that motivate and
inspire you.
Knowing the amount of time and
location you can work from.
Finding a situation that allows for
flexibility and accommodation of your
needs.
Recommended Reading:
Tips for Workplace Accommodation:
rehumatoidarthritis.com Volunteer Work and
Well-Being by Peggy Thotis and Lynn Hewitt
Volunteer Tips.
Page |7
Spotlight on: Deb Constien
By Nomi Harris Stanton
Nomi is an Arthritis Support Network
Leader and the Program Coordinator for
Girls on the Run of Central Maryland. She
has a BA in English from Bradley University
and a certificate in Clinical Mental
Healthcare from UMUC. Nomi will be
doing blogs for AI relating her own
personal journey as an RA warrior in the hopes that you
find yourself saying; "me, too".
We are lucky to have Deb as
part of our Arthritis Support
Network in Wisconsin. Deb is
nothing short of amazing. Deb
was diagnosed with rheumatoid
arthritis at the age of 13 and
wants folks to know that family,
with her, comes first. She is
incredibly active with her sons school, loves to
scrapbook, bake and cook. It's important to
note that there is really nothing that Deb does
not have a hand-in when it comes to being
the best possible advocate for our tribe. She
really believes that having a support network
around you makes all the difference in your
healing journey. She also really wants to
impress upon folks that asking for help is a
strength and not a weakness and a necessary
part of healthy living. Also, if you are not happy
with your doctor, find one that will really talk to
you but more importantly, listen to you. As a
patient, you have options and you should
always be your own best advocate. There is a
doctor out there for everyone! Deb is a
dietician by trade and a true mid-western
woman; she grew-up and went to school in
Illinois but now lives in Wisconsin.
When I tell you everything that Deb does to
represent us, you won't think it's possible for one
woman to do it all and yet, she does!
Deb is an Arthritis Foundation ambassador and
thinks that regardless of who your elected
official is, it's always good to get in their ear in
regards to healthcare reform. Deb serves on
the local Leadership Board as the Board Chair
and recently became the Advocacy Chair.
She is a dedicated Arthritis Support Network
Leader. Deb a true Champion of Yes and is the
most approachable, loving, kind and
empathetic woman.
When Deb jumped into Advocacy at the
beginning of 2015….Wow. There was no
stopping her. Deb did every assignment and
then some. She was even nominated for the
Edward M. Kennedy award for her work in
advocacy. She did not win this award but was
definitely awarded for her efforts by being
chosen as one of the Platinum Ambassadors.
Deb was awarded a scholarship from the
Arthritis Foundation that covered her travel
and hotel expenses. Deb was so proud to be
representing the Arthritis Foundation in such a
significant way that she also brought her then
16-year-old son and her husband to DC with
her.
If you haven't had the pleasure of speaking
with Deb, I would HIGHLY encourage you to
introduce yourself. If you are a patient, a
warrior, and a person wanting to educate
yourself on what is being done out there in
terms of research, Deb can lead you in the
right direction. What an honor it was to talk to
her and pleasure to spotlight Deb for this issue
of the Thrive Newsletter!
“The Summit was amazing… to go collectively
as a large group to Capitol Hill and to have our
‘asks’ practiced and ready to go. It was
empowering, educational and life changing!
“~ Deb Constein
Page |8
Welcome Fantastic New Arthritis
Support Network Leaders
By Nomi Harris Stanton
Nomi is an Arthritis Support Network Leader
and the Program Coordinator for Girls on the
Run of Central Maryland. She has a BA in
English from Bradley University and a certificate
in Clinical Mental Healthcare from UMUC.
Nomi will be doing blogs for AI relating her own personal
journey as an RA warrior in the hopes that you find
yourself saying; "me, too".
Jessi Pashia—St. Louis, MO
We are so lucky to have Jessi
Pashia representing us in St. Louis,
MO! Jessi came to us thru a web
search when she was looking for a
support group and then she came
upon AI! She was diagnosed with
rheumatoid arthritis in 2014 and
then was gifted fibromyalgia. Jessi is BIG on
awareness and she doesn't want anyone else
to ever have to suffer without arming
themselves with knowledge. A little bit about
Jessi; she grew-up in Missouri, she loves sports
and has two children; a boy and a girl. Besides
representing us, being a full-time parent, wife
and advocate, she works a full-time job at a
local utility company. Amazing.
To a newly diagnosed person, Jessi's best
advice would be to never give up. Tomorrow is
a new day! Learn about your diagnosis and be
your own best advocate.
Word Association Game
AI: Support, Love and Acceptance
Flare: Exhaustion
Support Group: Friendship
Chocolate: Martini
Barbara Grubbs—Columbia, SC
Barbara came to us thru an internet
search. She was diagnosed with
fibromyalgia and Sjogren's
syndrome back in 2008. She is a
nurse practitioner, which, she
admits, gives her the ability to help
others. She works at a gun manufacturing
plant and helps treat folks as a nurse. Working
as a nurse practitioner at the plant is perfect,
as far as she is concerned,
because she loves to shoot in her free time as
a hobby.
Barbara was born in New York but spent most
of her life in South Carolina. Barbara says that if
she where to give advice to a newly
diagnosed person, she would tell them to
educate themselves as best you can! Try to
accept it and be informed- it will help you start
your healing journey.
Word Association Game
AI: Positive attitude. AI is NOT just Arthritis
support it's for arthritis related autoimmune
disease.
Support Group: Connection, Positivity and
emotional bonding. Great place to share your
own experience and help others.
Flare: You can do it!
Ruby Nava—Chicago, IL
Ruby found us when she was at a
Juvenile Arthritis Conference, with
her son, this past summer in
Phoenix and that's where she met
Kevin! Ruby's son was diagnosed
with juvenile arthritis when he was 7-years-old
and Ruby, herself, was diagnosed with
rheumatoid arthritis in 2006. Ruby was born in
Chicago and is a real Midwestern gal. Ruby
wanted to become a support group leader
because she wants to encourage folks to not
bite their tongue! She wants folks to trust their
instincts and if a treatment plan is not working,
ask for something different! Be your own best
advocate! Ruby also spends a great deal of
time volunteering in both of her children's
schools. She really loves old movies from the
30's, 40's and 50's and her favorite actor from
that time period is Cary Grant (swoon). Ruby
wants folks to know that her inspiration and
strength for getting involved with AI and AF is
her son.
Word Association Game
Support Group: Support
AI: Family. Like coming home....
Flare: Turns my world upside down
Chocolate: YUMM
Continued on page 9
Page |9
Welcome Fantastic New Arthritis
Support Network Leaders
Continued from page 8
Candice Dusset—Chicago, IL
Chicagoland is a happenin'
crew with Candice and Ruby
taking it on! Candice is amazing
because she is originally from
New Orleans but has relocated
to Chicago and works for
American Airlines. Currently, she
works various shifts as she learns about different
positions within the company so her schedule,
as of recently, has been a bit wacky. Candice
was 23 when she was diagnosed with an autoimmune disease but even after that, it took a
few times (that's an understatement) to get
properly diagnosed. One piece of advice that
Candice would recommend to anyone who is
newly diagnosed would be to always get a
second opinion. She has a pet hedgehog
named Mr. Frodo. She also loves traveling,
photography, music and crawfish.
Word Association Game
AI: Support
Arthritis: Pain
Chocolate: Lots of things, but mainly cookies
Robyn Alexander—Tuscaloosa, AL
Robyn is a 41-year-old working
mother with two awesome teenage
boys who help her out a lot. She
works for a very busy local
rheumatology clinic where she has
done a little bit of everything from new patient
referrals, insurance verification, and front desk
receptionist.
Robyn was diagnosed with JRA at 15 years old
after a year of what she now refers to as the
year of ’weird’ where her body didn't know
what to do anymore. Robyn loves a great
conversation and is an experienced Netflix
binger. She cannot get enough Alabama
football in the fall and loves to cross stitch
whenever she can.
Casey Brasher—Tuscaloosa, AL
Casey is 30 years old and was
diagnosed with rheumatoid arthritis in
2008. She enjoys painting and coloring.
She conveys she can't do everything
she could before but she tries and does
most of what she can. Casey is on
disability so she’s home all the time. She has
always wanted to help people and is happy to
have this chance.
Casey wanted to become an Arthritis Support
Network Leader because initially she didn't
realize there was help and support for
someone like herself until she attended the
Arthritis Introspective Conference G9. The
overwhelming support and friendships she
made in that one weekend made her realize a
Support Network had to be set up in Alabama
for people with arthritis.
Casey gives this advice to the newly
diagnosed. "Your life is not over. It might slow
you down a bit, but you can get through it. It
won't be easy. You just have to be strong.
Arthritis Support Networks help a lot. They are
like family.” Continued on page 10
P a g e | 10
Welcome Fantastic New Arthritis
Support Network Leaders
Continued from page 9
“Support groups don’t have to be like ‘poor
pitiful me’. They can give you hope and a
realization of the fact that you are not alone.”
Word Association Game
Flare: Hope and pray it's not a big one and will
pass quickly.
Chocolate: Prednisone and 15lbs.
Arthritis Support Network
Participant Testimonial
By Irene Smith
This short testimonial is just one of the many
reasons why becoming involved is so
rewarding.
When you are newly diagnosed, meeting with
your peers helps you learn about your disease.
When your disease is not yet controlled by any
of the medications available, it is nice to come
into a room with people who have had the
disease for a while and know what it is like to
live with swollen joints, pain and fatigue.
My group leader has invited local people to
the support meetings. I have heard
rheumatologists, a tai chi teacher, pain
specialists, and a hand surgeon.
One of the meetings we have each year is
about helpful gadgets. People bring in things
that they use in their everyday life. It is
amazing how many gadgets are available for
opening jars. My favorite is a wrist wrench,
mechanics use this wrench on cars. One lady
brought in her dressing stick. Someone else
brought in a special device to turn stove
knobs.
When I was newly diagnosed it seemed like the
only people I saw outside of work were
doctors. Arthritis Support Networks give you a
new group of people to talk to and spend time
with.
Renee Champagne—Chicopee, MA
Renee Champagne is the leader
for the Arthritis Support Network in
Chicopee, MA. The purpose of the
Chicopee group is to provide a fun,
safe, empowering place for people
living with arthritis and other
rheumatic diseases.
Renee been living with rheumatoid arthritis
(RA) for nearly 30 years. She was diagnosed
when she was 16 years old. She received her
first total joint replacement at 26 years old.
Since then she has had 12 major surgeries to
help combat the destruction caused by RA.
Renee has been taking a biologic medication
since 2000 and it has helped immensely to
keep her RA under control. While being
diagnosed with a chronic illness at a young
age has been difficult at times, it has made her
a more compassionate person. Renee enjoys
helping other people and finds much joy in
giving back to her community.
Renee is excited to be a leader for an adult
peer led support group for people living with
arthritis and other rheumatic diseases. She
currently also leads a group for people living
with depression and/or bipolar disorder. Renee
feels this experience, along with her personal
health background makes her a good fit to be
a support group leader for people with arthritis.
Renee is medically retired and spends her time
with family, friends, and volunteering. She
enjoys meeting new people and making new
connections. When she was working, she
worked as a healthcare consultant. She
believes this aspect of her background will
help her to develop interesting educational
programs for the Chicopee Arthritis Support
Network.
If you are living with arthritis and its related
rheumatic conditions such as rheumatoid
arthritis, juvenile arthritis, lupus, fibromyalgia,
psoriatic arthritis, ankylosing spondylitis or
osteoarthritis, and you live in Western
Massachusetts, you are welcome to join the
Continued on page 11
P a g e | 11
Welcome Fantastic New Arthritis
Support Network Leaders
Continued from page 10
group! Renee says, “We here for you whether
you have been living with RA like me or are
newly diagnosed and you don't know where to
start! The Chicopee group is all about support,
education, and empowerment in a fun-loving,
positive environment!”
Michelle Hruby—Houston, TX
Michelle is a native Texan and a
mother of two. Her journey with
psoriatic arthritis began in early
2012. In her everyday life, Michelle,
works full time for a multi-specialty
group of physicians as a primary
nurse to a wonderful doctor whom she loves
and respects. Michelle has a 20-year-old
daughter and a 16-year-old son. She enjoys
bowling, gardening, reading, cooking and
spending time with friends and family. Michelle
believes that this is the right time for her to
reach out to others and create a support
system that will serve her community and
beyond. She believes that coming together
and sharing ideas, stories, coping skills will only
serve to strengthen everyone on this journey.
Michelle gives this advice for newly diagnosed
folks. "Educate yourself! Prepare! You may
always have questions and sometimes there
are no solid answers. Read. Advocate.
Educate. Be open to learning any and all ways
to improve your life. You can live a bountiful life
with your diagnosis. Never give up hope!"
Word Association Game
AI: Information, education, wellness and a
camaraderie like no other.
Support Group: Help and Information
Karen Hawes—Downeast Maine
Karen was diagnosed with
rheumatoid arthritis in 2012. It
came on suddenly and painfully.
Up until then she had been pretty
healthy and active. Karen had
osteoarthritis in her right knee so, in
2011, she had a knee replacement so she
could continue to play golf.
With the onset of rheumatoid arthritis, Karen
has not been able to play again.....YET! That is
still her goal. Her biggest frustration has been
not being able to get on the floor and play
with her young grandchildren. “Well,” She
laughed “I could get down there but getting
up would not be pretty.” Through it all Karen
has tried to maintain her lifestyle and my sense
of humor.
Karen in an RN and considers it a great career.
She cannot imagine having done anything
else. She has done 'floor' nursing, education
and middle management. Middle
management was her niche and she loved it.
Her communication and people skills went
along way to help in that work. My journey with
RA has been typical: pain, frustration,
limitations, need for support and the struggle to
find the right med regimen. I have vowed to
not let it define who I am nor keep me from
doing what I like. I look forward to sharing and
learning with others.
Karen is a people person and enjoys meeting
new folks and believes the support groups will
be a great way to find and give support with
others.
Karen’s goal is to offer a place for those folks
with rheumatoid disease and all forms of
arthritis to come and share their stories and
successes. Life has so much to offer. Karen
feels that we can help each other face arthritis
head on.
P a g e | 12
The 2017 Arthritis Foundation Advocacy Summit
March 6-7, 2017 at the Renaissance Arlington Capital View in Arlington, Virginia!
Take action and advocate! Join Arthritis Foundation Advocates at the Advocacy Summit and
become a Champion of Yes. Meet with your members of Congress and their staff.
“Earlier this year, several of us attended a local Advocacy Summit in Phoenix and it was a
very empowering and exciting experience. Meeting our state legislators at the State Capital
and sharing our stories, while educating them on a biosimilars bill being voted on, showed me
the power we have to make a difference. I highly recommend the advocacy experience to
everyone in our group.” Wendy Hawkins
“Last year was my first year going to the Summit and I was amazed at how wonderful it felt
finally taking a proactive role using my story to highlight important topics within the
community.” Kevin Purcell
How does it feel to be an Arthritis Foundation Advocate? Check out Deb Constien’s story on
page 9.
More details about the two-day agenda, with hotel and transportation information and an
application for a travel award to help cover part of the cost of the trip can be found by
clicking HERE. Travel Awards close on Wednesday, December 14. No late or incomplete
applications will be accepted.
Join in with other Arthritis Support Network and Gathering participants in DC 2017!
Thank you for being a part of Arthritis Support Networks.
We hope you enjoyed the fall 2016 newsletter.
If you would like to receive more updates please register at ArthritisIntrospective.org
5217 E. 26th, Tucson, AZ 85711
©2016. All rights reserved.
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