Interna��onal Pain Founda��on—45
er. Finally in October 2006, I only
had to use a cane to walk. Now, I
seldom use the cane, but it’s usually
accessible, just in case I need it.
Medications used to treat my other
health issues included: amlodipine,
azelastine, calcium, hydrochlorothiazide,
laratadine, latanoprost,
levothyroxine, losartan, metoprolol,
pantoprazole, potassium,
pravastatin, and vitamin D. I still
follow this medication regimen to
this day and have not had a major
flare like the one in 2006.
After recovering the BIG 2006
flare, I decided that I needed to
find ways to manage the lupus.
Thank God I already had a solid
support system of family, friends,
health care professionals, and faith
-based groups. I also joined a lupus
support group. I was on a mission
to educate myself about the
disease and be involved with my
treatment. I learned to do the following:
pay close attention to my
body, mind and spirit; develop appropriate
programs for exercise,
relaxation, and meditation; follow
guidelines for healthy eating; and
stay involved in social activities
while operating within my limitations.
I am a very reserved and quiet person,
at least I used to be. Before
my lupus diagnosis, I never envisioned
myself asking people to
donate to a cause, doing radio and
newspaper interviews, speaking
about my personal medical condition,
or writing books. Yet, after
my condition stabilized, Cecil and
I began working toward increasing
lupus awareness and raising funds
to support the lupus community.
Our volunteer work includes participating
in area support groups,
speaking at meetings of local organizations
and churches, and representing
various lupus organizations,
mainly the Lupus Society of
Illinois (LSI), at various health
fairs. We also serve on the LSIsponsored
Southern Suburbs Illinois
Lupus Walk Committee,
which hosts a walk during or after
May’s Lupus Awareness Month. I
am the Captain of team K’s Hope
for a Cure. Now I find it fairly
easy to talk to people, especially
about lupus.
I tell about my struggles, fears,
losses, and victories in my first
book - Fighting Lupus Battles –
Hope for a Cure. The book includes
more than twenty true stories
about real people who are living
with the effects of this mysterious
and unpredictable disease
called lupus. With medical commentary
from two of my doctors,
as well as general educational information
about the lupus disease,
the book was written to help raise
awareness, broaden knowledge,
encourage understanding and compassion,
improve provider/patient
communication and relationships,
and promote research. I’ve just
published my second book -
Fighting Lupus Battles – Living,
Hoping, Searching, Climbing, Researching
for the Cure. It includes
updates and stories from more lupus
patients and information about
lupus research.
Today, my condition is fairly stable.
I awake each day being thankful
to God for three main reasons:
I am still alive; I can usually function
independently; and I have loving,
caring family members and
friends who support me. Even
though I have painful and sore
joints and find it difficult to walk
sometimes; even though my voice
is raspy and I am not able to sing
like I used to; even though I still
have a mild productive cough;
even though I fatigue easily; even
though I forget or may not fully
understand things at times; even
though I second-guess most things
I do; even though I have to take
lots of medications, I am still alive
and learning to live with lupus in a
positive and productive way. I try
to do what I can to be as healthy as
possible, and I leave the rest to
God.