butterflies of hope newsletter

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Butterflies Butterflies Butterflies Of HOPE Of HOPE Of HOPE MONTHLY NEWSLETTER OF LUPUS IN COLOR OCTOBER 2012 – VOLUME 1 “As a butterfly emerges from its cocoon it gives HOPE to each caterpillar that strives to earn her wings. HOPE that one day that butterfly will get her wings and fly!” ~Racquel H. Dozier~ Welcome to Butterflies of HOPE Welcome to Butterflies of HOPE Newsletter for the Lupus in Color Foundation. We are happy to communicate through this venue as an addition to online support. Here you will find helpful articles, stories and tips that will teach you more about Lupus and the effects it has on a Lupus Survivor’s life. This newsletter will also serve as a way to place a face to what lupus really is. Lupus is a disease that has been hidden with due to the lack of Lupus In Color Mission and Goals Lupus In Color has been created to cater to the needs of women and men of all colors of the rainbow suffering or directly affected with Lupus. The Lupus In Color Mission is to spread lupus awareness and assist lupus survivors in day to day living. Our Motto is: "I Have Lupus, Lupus Does NOT Have Me!" This motto gives us the strength to move on. It removes the stronghold that this invisible disease can have on its survivors. knowledge and the goal is to heighten the awareness of this silent disease. This is a great way to spread awareness and we hope that you will spread the word and send Butterflies of HOPE to others to share the knowledge and awareness. I hope you enjoy the first edition of the Butterflies of HOPE Newsletter. ~Racquel H. Dozier~ Founder/President Lupus In Color Events October 15 Newsletter Distribution October 16 Butterflies of Hope Support Group Glen Allen, VA Glen Allen Library 7:00 PM GL Conference Room

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Page 1: Butterflies of HOPE Newsletter

ButterfliesButterfliesButterflies Of HOPEOf HOPEOf HOPE

MONTHLY NEWSLETTER OF LUPUS IN COLOR

OCTOBER 2012 – VOLUME 1

“As a butterfly emerges from its cocoon it gives HOPE to each

caterpillar that strives to earn her wings. HOPE that one day that

butterfly will get her wings and fly!” ~Racquel H. Dozier~

Welcome to

Butterflies of HOPE

Welcome to Butterflies of HOPE Newsletter for the Lupus in Color Foundation. We are happy to communicate through this venue as an addition to online support. Here you will find helpful articles, stories and tips that will teach you more about Lupus and the effects it has on a Lupus Survivor’s life. This newsletter will also serve as a way to place a face to what lupus really is. Lupus is a disease that has been hidden with due to the lack of

Lupus In Color Mission and Goals Lupus In Color has been created to cater to the needs of women and men of all

colors of the rainbow suffering or directly affected with Lupus. The Lupus In

Color Mission is to spread lupus awareness and assist lupus survivors in day to

day living.

Our Motto is: "I Have Lupus, Lupus Does NOT Have Me!" This motto gives us

the strength to move on. It removes the stronghold that this invisible disease

can have on its survivors.

knowledge and the goal is to heighten the awareness of this silent disease. This is a great way to spread awareness and we hope that you will spread the word and send Butterflies of HOPE to others to share the knowledge and awareness. I hope you enjoy the first edition of the Butterflies of HOPE Newsletter. ~Racquel H. Dozier~ Founder/President

Lupus In Color

Events

October 15

Newsletter

Distribution

October 16

Butterflies of Hope

Support Group

Glen Allen, VA

Glen Allen Library

7:00 PM

GL Conference Room

Page 2: Butterflies of HOPE Newsletter

LETTER TO FAMILY AND

FRIENDS (INVISIBLE DISEASES)

I’m not trying to speak for

everyone, but from my

own perspective I can tell

you what I NEED from my

family and friends and so

seldom get.

I NEED TO BE

SHELTERED dropped off

at the curb and told, don't

try to do that, let me help

you.... There is so much

going on in my body that I

have no control over and it

does get overwhelming

and exhausting to my

body.

I NEED TO FEEL

PROTECTED even though

I can't be safe on the

inside at least I can feel if

ANYONE or ANYBODY

wants to "get at me" then

they are going to have to

"GO THROUGH"

I NEED TO FEEL

CHERISHED as if my

family or friends feel they

are blessed for each day

we have together, LIFE IS

SO FRAGILE.

I NEED TO FEEL CARED

FOR when I am feeling

sick everything is hard to

do, even dressing and I

WOKE UP WITH ONLY 2

MILES OF ENERGY INSIDE

OF ME AND A NORMAL

DAY TAKES 25 MILES

WORTH. I need someone

else to say, "let me empty

the dishwasher", or “so

what do you need me to

do?” I FEEL GUILTY when I

can't do the daily

inconsequential details

that are the GLUE

HOLDING THE

HOUSEHOLD INTACT.

I NEED TO FEEL

RESPONSIBLE I know the

latest research, I am on

the internet each day to

learn more, please don't

say B-12 might cure me,

I’ve tried the miracle

cures and read the

articles. DON’T YOU

KNOW how

DISAPPOINTED I GET

WITH MY OWN BODY for

NOT COOPERATING?

I NEED TO FEEL

FORGIVEN for NOT

being a full person (in the

world's view). You may

not hold a grudge, I know

it’s hard on you to pick

up slack, but I don't FEEL

FORGIVEN, I feel guilty.

I NEED TO FEEL LIKE

PART OF A

TEAM working toward a

common goal (our life

together) and it is OK if

my main contribution is

SPIRIT.

I NEED TO FEEL

INCREDIBLE I get angry

sometimes seeing a

tennis mom sachet into

lunch with the girls after

a manicure. I WISH I had

the energy to even have

a manicure, let alone

waste precious energy on

such frivolous pursuits as

gossip over lunch and

judging other women's

clothes and homes and

accomplishments.

I NEED TO FEEL

AFFIRMED So many

people scoff when I can't

"Do just this one little

activity, and it IS

EXPECTED." I get tired of

feeling guilty for not

BEING ENOUGH to people

that I don't care about in

the first place. When I

rant over the injustice of

my illness, don't try to

talk me out of it, or

encourage me, ust say "I

KNOW, IT ISN'T FAIR,

YOU DON'T DESERVE

THIS"

I NEED A FRIEND who

is there for me on the

good days and there for

me on the bad days, too.

I get left out of a lot,

because I go for periods

of time when I am unable

to do much, they think I

probably can't

participate, so they forget

about me, or just don't

even invite me. It is

LONELY being ill over a

long term.

I NEED TO BE

ENCOURAGED The

thought of being sick like

this for the rest of my life

INDUCES WAVES OF

PANIC. It sometimes

seems like a life not

worth living, the quality is

so poor so much of the

time. I’m a Christian, I

have great faith, but it

can be overwhelming,

especially when it’s

implied "if your faith were

greater, or if you would

just DECIDE not to be

sick....." We HAVE ALL

TRIED THAT - it doesn't

work.

I NEED TO BE PRAYED

FOR Frankly sometimes

in the middle of the night

when everyone is

sleeping soundly and

there are only the creaks

of the house for

company....I'm SCARED,

REALLY SCARED. I

wonder who will

remember me when I’m

gone and if I’m making

any sort of impact on the

world at all to validate

my life. REALITY looms

large and feels ominous.

It seems like I’m

PURSUED NIGHT AND

DAY BY A STEALTHY UNSEEN

STALKER, who knows my

every move. It would feel

wonderful to really believe I

am actively prayed for.

I NEED TO BE

ANTICIPATED if I am sick in

bed, know that I am dying

inside, because I am

neglecting things that need to

be done, and the PRESSURE

AND STRESS TO GET WELL is

VERY GREAT because I know

when I do get out of bed

THERE WILL BE EVEN MORE

RESPONSIBILITY WAITING

FOR ME than BEFORE I wore

myself down into a state of

exhaustion and bedrest. Just

come on over and SILENTLY

DO SOMETHING/ ANYTHING,

and don't even expect

gratitude, I may not even

realize, but when I get up a

lighter load will be blessed.

I NEED TO BE NURTURED I

just got an email requesting a

group of us to get a nice meal

up for someone, because she

is down with the flu, poor

husband for taking care of

her! I LIVE WITH THE FLU

EVERYDAY OF MY LIFE! The

Page 3: Butterflies of HOPE Newsletter

LETTER TO FAMILY AND

FRIENDS (INVISIBLE DISEASES)

last time a a meal was

brought to us, was a year

ago, after I had been

extremely sick for 6

weeks. Before that it was

years. No one even

THINKS of reaching out to

a chronically ill person,

because they might be

EXPECTED to do it

monthly or because they

are so used to you being

sick, they don't even

realize sick MEANS SICK.

Our families suffer too,

and would like a warm

meal, as much as the lady

who just had a baby or

the woman with toe

surgery.

I NEED TO BE

APPLAUDED give me

CREDIT for being a

SURVIVOR AND A

THRIVER. TO KNOW that

there are women out

there who have never had

more than a broken

acrylic nail and an

unreliable housekeeper, is

infuriating sometimes,

especially when it’s

implied they must be

better than me or I

wouldn't be sick all the

time and unorganized and

uninvolved. I know we

don't know what people's

lives are like behind

closed doors, but I would

love, have prayed, to

JUST BE SHALLOW FOR A

DAY and take every STEP,

BREATH AND ACTIVITY

FOR GRANTED without

deciding WHICH few

things I could do today

that will make a

difference over the next

30 years (it is almost

always be a good mom

and wife).

I NEED TO BE

RESPECTED I am

intelligent, I am

attractive, I was once

beautiful.... It is

depressing to swell into a

stranger because of meds

and to have no clothes

that fit attractively. I'm

too tired to shop for

them, and if I did shop

for new clothes, I

wouldn't have energy to

wear them anywhere

anyway. I CAN DO

THINGS, I just can't

prove it very often. I AM

SOMEBODY not a

disease, but the disease

overshadows my chance

TO BE MYSELF.

I NEED TO FEEL

NORMAL Sometimes it

feels like a BOLT OF

REALITY HITS ME, as if I

JUST REALIZED I am not

a healthy person for the

very first time. It doesn't

seem real or possible for

a minute, almost

shocking. I can't do

everything, but

sometimes it would be

fun to just play with no

worries. HELP ME ESCAPE

for a few hours to a play

or comedy club,

somewhere different

where no one knows and

I can forget.

I NEED MY

DIGNITY It’s important

for me, with so little

control over anything else

in my life, to at least

have my dignity. Please

DON'T SPECULATE

ABOUT ME with other

family members or

friends and compare

notes about my progress

or lack of progress or

determination or

mindset, or your opinion

of what I could, should or

ought to be doing

differently. It is easy to

be smug when you aren't

wearing lead ankle

weights each day and

trying to walk through

neck deep water, this is

what it really feels like.

Everything is ten times

harder for me than it is

for you.

I NEED TO FEEL

ACCEPTED AND

INCLUDED not like a

project to be

SCRUTINIZED for

worthiness and validity.

I’m not going to doctor

after doctor and

struggling to survive for

ATTENTION. Believe me,

if I wanted attention, I’m

bright and capable

enough to get it in other

ways. I’d rather be

noticed for my good

qualities and

accomplishments. Even if

I were getting attention,

which I’m not, it certainly

isn’t worth all this

seclusion and suffering.

REALLY who WANTS to

have medical tests run

and spend travel money

on medication?

Not every day is like this,

there are good days, and

that is what makes the

bad days even more

depressing sometimes,

because you realize what

you are missing.

DON’T TALK, JUST DO.

Actions speak louder than

words. You have the

freedom to buy a plane

ticket and go anywhere in

the world and enjoy it.

You can take a job, or

join a club, or garden or

take a hike or run in to a

new shop

or.............anything you

decide to do on a whim. I

have to think and plan

and strategize. I am

afraid to make plans

because I really don't

know if I will be able to

follow through on them.

Even planning takes

energy, which may not

leave enough energy for

the actual doing. YOU

PLAN SOMETHING and

pull me along, with no

responsibilities and NO

GUILT if I can only do

half of the plan...at least

we will have done

something.

I don't like having lupus

but I have learned that I can't ask why me. I

just have to do what God has led me to do with it. I am thankful

that I am given the op-portunity to talk to peo-

ple all over the world about it. To help some-one through their

struggle, to be able to give someone else a

glimmer of hope in their day.

What a hidden blessing it has been and contin-

ues to be as it creates a better me for a greater

good! I have lupus, lupus

does NOT have ME!

~Racquel H. Dozier~

Page 4: Butterflies of HOPE Newsletter

10 Questions to Ask Your Doctor About Lupus

What are the possible

side effects of my lupus drugs?

How long will I need

to take these lupus

drugs?

Is it safe for me to

become pregnant if I have lupus? Are my lupus medications safe to take while I’m pregnant?

How often should I

have checkups?

What lifestyle

changes do you

recommend?

DID YOU KNOW?

Ninety percent of the

people who develop

lupus are female. Males

also can develop lupus

and their disease can

be more severe in

some organs.

10% of people with lupus are men. Lupus is often re-

ferred to as a “women’s health issue” because 9 out

of 10 people with lupus are women; however men get

lupus too.

Yes,

Men Can Have Lupus!

It is a mistake to think of

lupus as exclusively a

women's health concern.

Men with lupus face a

unique challenge. It may

be difficult for them to

discuss a disease that so

many people think occurs

only in women. Because

there are fewer men with

systemic lupus, they may

have trouble meeting

other men with the

disease. This may prevent

them from gaining the

benefits of mutual

support. While many of

our female patients are

interested in meeting any

other people with lupus,

virtually most of the male

patients ask about other

men with whom they can

speak.

Join Lupus In Color for an intimate

group of supportive people sharing

their experiences with Lupus.

Real help from real people who

know exactly how you feel!

New To Lupus In Color

Men typically have to

deal with living up to the

expectations of being a

physically strong and

c a p a b l e p r o v i d e r .

Because lupus can cause

such exhaustion and

other physical problems—

many of which can’t

always be seen by

others—people may

unfairly call men with

lupus weak or lazy. Not

being able to work full-

time because of illness

can be especially hard.

Although most lupus

symptoms are similar in

both men and women,

and also despite the fact

that lupus affects more

women than men, the

disease seems to behave

more aggressively in

men.

Could any medication

I'm taking be

triggering or

aggravating my lupus

symptoms?

Could another

condition be causing my lupus symptoms?

Has the disease

already damaged my kidneys or other

organs?

Should I have a bone

density test?

Should I be taking

calcium or other supplements?

Men with Lupus

Page 5: Butterflies of HOPE Newsletter

EACH LUPUS SURVIVOR REPRESENTS HOPE COURAGE STRENGTH AND FAITH. THERE IS NO ONE LOOK OF LUPUS. SEE THE MANY FACES OF LUPUS AND KNOW THAT A LUPUS WARRIOR CAN BE ANYONE

YOU KNOW NO MATTER HOW THEY LOOK!

The Many Faces of Lupus

RACQUEL LUPUS WARRIOR

9 YEARS

TRINITY LUPUS WARRIOR

25 YEARS

SAMANTHA LUPUS WARRIOR

10 YEARS

JENNIFER LUPUS WARRIOR

3 YEARS

JILL LUPUS WARRIOR

16 YEARS

MEGGY LUPUS WARRIOR

4 YEARS

BOBBIE LUPUS WARRIOR

6 YEARS

RACHEL LUPUS WARRIOR

8 YEARS

DEBORAH LUPUS WARRIOR

7 YEARS

KASSONAH LUPUS WARRIOR

2 YEARS

STACI LUPUS WARRIOR

12 YEARS

ROBERTA LUPUS WARRIOR

17 YEARS

JAMES LUPUS WARRIOR

8 YEARS

JANIE LUPUS WARRIOR

LINDA LUPUS WARRIOR

9 YEARS

Page 6: Butterflies of HOPE Newsletter

The Many Faces of Lupus

CHARLENE LUPUS WARRIOR

4 YEARS

ELSIE LUPUS WARRIOR

6 YEARS

SHIRLEY LUPUS WARRIOR

2 YEARS

NICOLE LUPUS WARRIOR

27 YEARS

CALLIE LUPUS WARRIOR

1 YEAR

ANTAWANA LUPUS WARRIOR

8 YEARS

AMANDA LUPUS WARRIOR

14 YEARS

DAVID LUPUS WARRIOR

9 YEARS

WENDY LUPUS WARRIOR

1 YEAR

MONIQUE LUPUS WARRIOR

12 YEARS

THERESA LUPUS WARRIOR

5 YEARS

ROBIN LUPUS WARRIOR

13 YEARS

JENNY LUPUS WARRIOR

7 YEARS

TOTONYA LUPUS WARRIOR

17 YEARS

VERONICA LUPUS WARRIOR

7 YEARS

EACH LUPUS SURVIVOR REPRESENTS HOPE COURAGE STRENGTH AND FAITH. THERE IS NO ONE LOOK OF LUPUS. SEE THE MANY FACES OF LUPUS AND KNOW THAT A LUPUS WARRIOR CAN BE ANYONE

YOU KNOW NO MATTER HOW THEY LOOK!

Page 7: Butterflies of HOPE Newsletter

The Many Faces of Lupus

ELLA LUPUS WARRIOR

12 YEARS

TANNISHA LUPUS WARRIOR

3 MONTHS

TINA LUPUS WARRIOR

9 YEARS

TERRY LUPUS WARRIOR

14 YEARS

MAYA LUPUS WARRIOR

9 YEARS

EVELYN LUPUS WARRIOR

1 YEAR

ALMA LUPUS WARRIOR

SINCE BIRTH

SHANNAN LUPUS WARRIOR

2 YEARS

MANDY LUPUS WARRIOR

13 YEARS

LEAH LUPUS WARRIOR

10 MONTHS

CHRISTY LUPUS WARRIOR

13 YEARS

WANDA LUPUS WARRIOR

23 YEARS

MICHELLE LUPUS WARRIOR

1YEAR

KIMBERLY LUPUS WARRIOR

6YEARS

ANNETTA LUPUS WARRIOR

EACH LUPUS SURVIVOR REPRESENTS HOPE COURAGE STRENGTH AND FAITH. THERE IS NO ONE LOOK OF LUPUS. SEE THE MANY FACES OF LUPUS AND KNOW THAT A LUPUS WARRIOR CAN BE ANYONE

YOU KNOW NO MATTER HOW THEY LOOK!

Page 8: Butterflies of HOPE Newsletter

BUTTERFLY SPOTLIGHT

Kassonah Smallwood

Kassonah was diagnosed with a mix connective tissue Lupus

(Scl) and myositis on July 4,2010.

Before being diagnosed Kassonah was constantly sick and

the doctors that she visited with told her she was crazy and

fat. It took three years before a firm diagnosis was given.

During that waiting time, Kassonah states that her mother

has been a very strong force in her life during diagnosis and

as she deals with having lupus. She is so grateful for her

mother everyday.

Kassonah Speaks

“I really don't have friends but everybody says that I was

their friend but they never came to see me. Sometimes I

feel like lupus has taken over my life. Sometimes, I want to

cry because nobody seems to know how I feel. To be told

you don't look sick or you’re lying or I don't care if you sick,

makes it hard to deal with the illness.“

Due to lupus, at the age of 28 Kassonah has a pacemaker

and is on oxygen 24 hours a day. Since diagnosis she was

also stricken with sleep aepnea and it makes it hard for her

to relax.

What Kassonah wants people to know….

“I will like people to know that I know I don't look sick but I

am! Sometimes it’s hard to get out of bed and I did not ask

for this disease. If you read about lupus you will under-

stand it more. I want people to know that lupus survivors

are not all the same. I can't work right now but I know oth-

er women with lupus who can work. Since a lot of people

don’t know about lupus I would like them to just ask a sur-

vivor about it. Don’t just say oh of you take your medicine

you will be ok, because it’s not ok to hurt and sometimes

the medicine will not help the pain go away. We need help

to find a cure for this illness!”

“Sometimes I want to give up because I hurt so bad, but I continue to fight

because I will not let lupus win and take me from my family.”

~Kassonah Smallwood~

Page 9: Butterflies of HOPE Newsletter

The Importance of Support

When one is faced with an

illness like lupus, having a

support system to lean on is

as important as having physi-

cians, medications and treat-

ments to rely on. Lupus is not

only physically draining, it's

emotionally draining. It's dif-

ficult enough to have to ex-

perience the fatigue, rashes,

pain, and other assorted

symptoms of it, but when you

have to constantly explain

lupus to people ("Yes, it's a

'real' disease." "No, there's

no cure." "Yes, you can die

from it." "No, I'm not 'all bet-

ter' yet!"), it can be severely

draining to your spirit.

This is where the importance

of a support system lies. A

lupus patient needs to have

at least one person who is

unquestionably "there" for

him or her, 24 hours a day, 7

days a week, for whatever

reason. When you're faced

with a disease that lulls you

into a false sense of security

("I haven't had a flare in a

year!") only to slam you, lit-

erally overnight, with symp-

toms so bad that you can't

get out of bed, and the touch

of sheets on your body drives

you tears, you never know

when you'll need that uncon-

ditional support!

Humans are basically social

creatures. We reach out to

one another in good times, to

share our joys and hopes,

and in bad times, to get sup-

port and help. The fact that

you are reading this article is

indicative of a desire to learn

more, to reach out to others,

to share, and perhaps to

help.

The majority of lupus pa-

tients are young and female.

For most of us, being female

predisposes us to being the

"supporters", not the

"supportees". We just don't

tend to seek out the kind of

help that we need because

we either think that we're

strong enough to handle it, or

we don't want to "bother"

anyone. Being young can

predispose others to think

that we don't need help be-

cause the common thought is

"Young=Strong" and support

is something only older peo-

ple need. Both of these

myths can hinder and hurt a

lupus patient's health.

Additionally, being young

causes most of our closest

support systems to be our

families--Our parents and

husbands, and in some cas-

es, our children. It can be

extremely difficult to get the

ones we love so much to un-

derstand how we're feeling.

Parents of lupus patients fre-

quently go into denial about

their children's illness. It's

difficult for them to accept

the fact that their once lively

and energetic child has such

a draining disease. Addition-

ally, when the question "Is

lupus genetic?" comes up,

parents may feel an unwar-

ranted sense of guilt if they

or someone else in their fam-

ily has lupus, or symptoms of

lupus. However, parents are

usually the first ones that are

there for their child in need,

no matter how they may be

dealing with their own feel-

ings. There really is nothing

like a parent's unconditional

love for a child, and the lupus

patient should realize that

parents can be a wonderful

fount of love and support!

Husbands and boyfriends (I

include "wives and girl-

friends" with these terms--

It's just that the majority of

lupus patients are female--

by Karyn Moran Holton

Page 10: Butterflies of HOPE Newsletter

Apologies to the males read-

ing this!) of lupus patients

can also have a difficult time

with understanding lupus and

its effects on the person they

care about. Day-to-day sup-

port is essential to the lupus

patient, due to the unpredict-

able nature of the wolf. It can

incapacitate the sufferer liter-

ally overnight, with little or no

warning. The spouse or signif-

icant other also has to deal

with feelings of guilt some-

times: "Is she having a flare

because we went out too late

last week?" "Is she sick be-

cause I don't do enough of

the housework?" "Is the lupus

affecting the way I see her?"

These can be tough issues to

deal with!

The major thing to remember

when dealing with relation-

ships with significant others is

communication. It's fine to

feel any emotion--It's how we

deal with those emotions, and

how they are perceived by

our loved ones that makes a

difference. For example, if a

lupus patient is weaning off a

round of steroids, it can make

her tired, irritable, and sub-

ject to bouts of pain. These

things can (understandably!)

cause her to withdraw into

herself, without much time or

energy to devote to her sig-

nificant other. Without com-

munication, he may feel that

she is ignoring him, or that

his efforts to make her feel

better are unappreciated

which can, in turn, make him

withdraw from her. This ugly

cycle can only be broken with

much love, patience, and

most of all communication!

Children can be a wonderful

source of support for the lu-

pus patient. They don't even

have to be yours! If you don't

have children of your own, or

friends or relatives with young

children, I recommend volun-

teering at your local library or

elementary school, even if it's

just to read to children once a

month. Children have an in-

exhaustible supply of energy,

good nature, and joie de vivre

that can lift one's spirit, and

refresh one's soul! Spending

some time with children can

be an enlightening, and heal-

ing experience!

Of course, no article on sup-

port would be complete with-

out mentioning the hundreds

of profess ional, semi-

professional, and just-plain-

folks support groups available

to lupus patient today. The

LFA has many local chapters

available to patients, and

families, and there are many

mailing lists, and other online

support groups that can be

accessed by lupus patients

who are unable to leave their

homes to attend meetings.

There is no one who can un-

derstand lupus suffering like

someone who's been there!

Additionally, venting one's

problems to someone who is

likely to need your supportive

shoulder in the future, can

assuage any feelings of "I

don't want to bother anyone

with this" syndrome! Take

advantage of these programs

if you can. The simple feeling

of realizing that you're not

alone can be overwhelmingly

supportive, and by helping

others in their struggle with

the wolf, we often find that

we are really helping our-

selves.

The Importance of Support

Page 11: Butterflies of HOPE Newsletter

BUTTERFLY WRITERS

SPOTLIGHT

Valerie Callahan To My Loving Sister

by Valerie Callahan

My sister was born into a courageous family My mother bore many sorrows strongly

I see my mother’s strong spirit in my loving sister Who has Lupus , but continues to live out her wishes

I know my sister’s Lupus flairs make for a challenging life I always know that her body will be facing strife

It affects different parts of her body daily But, she keeps on going, fighting life fiercely

Knowing what she’s going through is difficult everyday I know I can only encourage , feeling helplessly inane

I laugh as she walks courageously forward, you see

Saying ,”I have Lupus and Lupus doesn’t have me” So glad she keeps up the long unending fight

Living life to the fullest, not turning back frightened Keep going my sister, my heart is with you in this

I love your spirit, I find nothing there remiss You share your heart and soul so endlessly

Lupus is there, but it’s going to have to flee.

Lovingly,

Your Sister Valerie Callahan

Valerie Callahan is a published author and the sister of the

founder of Lupus in Color. She is a great support of Lupus

Awareness and works hard to spread that awareness and

encouragement through her writings.

Interested in seeing her work?

TOWARD THE OTHER SIDE

http://www.amazon.com/Toward-The-Other-Side-ebook/

dp/B008W2HM7C

Page 12: Butterflies of HOPE Newsletter

Lupus In Color Important Links

Lupus Screening Quiz

http://arthritis.about.com/od/lupusthebasics/l/bllupusquiz.htm

Test your lupus knowledge

http://arthritis.about.com/library/quiz/blquizlupusknow.htm

Lupus Foundation of America

http://www.lupus.org/newsite/index.html

Lupus Research Institute

http://www.lupusresearchinstitute.org/

Lupus Now Magazine

http://www.lupus.org/webmodules/webarticlesnet/templates/

new_magazinehome.aspx

Lupus In Color Blog

http://www.lupusincolor.blogspot.com/

Lupus In Color

http://www.lupusincolor.com

Lupus In Color Store

http://astore.amazon.com/luinco-20

Lupus tutorial

http://www.nlm.nih.gov/medlineplus/tutorials/lupus/htm/

_no_50_no_0.htm

Page 13: Butterflies of HOPE Newsletter

Spread The Word!

Lupus In Color has been created to cater to the needs of women of all colors of the rain-

bow suffering or directly affected with Lupus.

The research, information and/or answers provided in this newsletter are not meant to be

used as a substitute for Professional Medical advice. Information is gathered from several

sources via the internet and print and may differ from your physician's advice. The infor-

mation provided and presented is for educational purposes and to support survivors and

supporters in the quest to learn more about a most silent disease. Being a lupus survivor

can be a lonely and misunderstood disease and we want to help those affected to lessen

those feelings.

We are here to help you in any way that we can as well as offer each survivor as much

support as we can for as long as they may need it.

We ask that you visit with your personal physician for professional evaluation of your indi-

vidual cases!

The Lupus In Color goal is to provide education and support as well as an outlet when your

emotions have gotten the best of you.

SPREAD THE AWARENES BY FORWARDING OUR NEWSLETTER TO OTHERS!

http://www.lupusincolor.com | http://lupusincolor.blogspot.com