Why the butterfly?  People living with Lupus often have a rash on their face called a malar rash.  Commonly called a 'butterfly' rash, it appears across the nose and cheeks, in the shape of a butterfly's wings.  You will find a different butterfly on each page, representing how different Lupus is for each person. Lupie Fun Page

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POETRY




My name is Kerry and I live in North Carolina. I wrote the following poem to describe how lupus affects me. People might relate to it.
I am 57 and was diagnosed about five years ago, but the doctors think Iíve probably had lupus since my mid-twenties when inflammatory arthritis popped up in my life.
I also have several other auto-immune diseases like Sjogrenís and some crossover scleroderma, plus thyroid disease, but other than joint and muscle pain, fatigue and some cognitive troubles, lupus has not been the horror for me that it is for many people. Iím most grateful not to have had any major organ involvement.



Lupus

Wolf, your image is graceful stealth, but

my fatigue settles like darkness at winter dusk,
clumsy as wet wool weighting my limbs.
It sifts through my brain -
like soot from a damp chimney,
massing in spongy drifts.

Cast from the pack -
you den beneath my skin and
eat my sleep - marking
your passage with marrow-ache.

My mornings trail the scent of my exhaustion.

Defective beast, you still have teeth enough to chew fresh bone.
Sick-sweet pain of exile, tasting death.


Kerry H., 2004
(all rights reserved)



I guess I wrote this one when struggling with "accepting" what was going on with me physically and grieving my "old self" and I had just been diagnosed weeks before with all the wonderful ailments from my Rheumy. Thank God those days are short lived!

Lost Memories

Where did you wander?
Do you turn a deaf ear to my beckoning?

Recall of another life
further distanced upon sunrise.

Will you enter my dreamland
when the moon floats above to stir
these faded memories?

I search for the lessons you place
in my path,
But can not remove this shroud
placed upon my being.

I am like a gladiator,
grappling for armor,
attempting battle with unseen invaders.

An ocean wave approaches,
plunders me with grief.

As salty droplets create
their riverbed upon my face.

Eileen M. Telesco-Lee
5/29/00





One Day at a Time


Bridges can be built,
one day at a time.
Forgiveness can be felt,
one day at a time.

Balance can be achieved,
one day at a time.
Dreams can be believed,
Lost smiles can be found,
and your meaningful
plans can succeed.

New horizons can be reached,
one day at a time.
The journey inward can be complete,
one day at a time.

Love can be your guide,
one day at a time.
Health, healing, and
happiness thrive...

One day at a time.


-Author's name withheld by request





My Lupus Prayer

To be free as the butterfly
and the flower he tends.

To be warmed by the sun
and call it my friend.

To be swift and strong,
as the "wolf" I now fear.

To feel the breath of our laughter
that dries up a tear.

To put aside pain
and forget where it's been.

To fight with all my being
and know I can win.

-Sharon Smart, Lupus patient, President and Facilitator of the Lupus Group of Tulsa





Relinquishing

Sight.....
So I absorb all I see, as if for the first time,
afraid to look away and no longer be able
to retrieve the astonishing sights around me.

Sense of touch.....
Will I lose the strength to place my
arms around you and hold you close, and
if I do?....
there was a lifetime of countless
embraces to recall and warm me.

Mobility......
The pace is different, but there IS a pace
and I am learning to slow down.

My mind.....
This is the wall I try to break through,
my stumbling block, my biggest fear,
I have not yet accepted nor do I want to
imagine what may lie ahead...

You have made me a different person in
so many ways....
ways in which I am grateful.
Bizarre that I can be grateful for the
limitations you have placed upon me.

How long have I dwelled on the trivialities
of daily life?
How long have I allowed myself to be lost
in senseless inconsequences that have
taken up unretrievable moments?
Lost energy on the ridiculous?

I had forgotten I am,
like all of you,
mortal......
I laugh at myself.
Placed in my path for a purpose,
although vague,
lessons to be learned,
life to be appreciated,
my shell was intended to crumble
from my first breath.

I forget this.... thinking the sun and moon
will rise ahead of us never-ending.

There is one part you will not touch,
that is mine alone,
that you can not rob.

My soul,
is forever,
never-ending,
outlasting all beginnings or endings.
It shall go on till eternity,
untouched, unscathed.
It's path unfaltered
by the quicksand beneath my feet...
It makes me stronger.

Eileen M. Telesco-Lee
6/8/00





The Day My Baby Cried

I'll never forget
That night, that fateful sigh
The intense, burning agony
When I made my baby cry

I witnessed his sadness
Deep within his face
and saw a fallen dove
torn from the arms of grace

A simple slip
a word, wrongly placed
tore pain deep inside me
and anguish, now I faced

Though he did forgive me
for raising my voice that night
the pain I saw in his eyes
gave me... second sight

And now I shed a tear
for the sadness I have made
a wrenching pain inside me
cutting like a blade

I closed my eyes and prayed
for this pain to go away
but in my heart I know
this memory will stay

For there are no excuses
to answer for this sin
and now I am condemned
to feel the pain within

So, now I am so careful
and think before I speak
because anger is not strength
but a sign of those, so weak

So, now the dove soars overhead
gliding across the sky
but, I still cannot forget the day
I made my baby cry.

Thanks for saving me that night
if not for you ..where would I be?
I would miss to see your face
Oh what a beautiful sight.

Love, Marlene
1/23/2001




RECIPES



Pineapple Angelfood Cake

1 pkg. Angel Food Cake Mix (all in 1 pkg. Variety)
1 - 20 ounce can crushed pineapple (NOT DRAINED)

Dump cake mix in bowl; add pineapple, juice and all. Beat well by hand. Pour into a 13" x 9" pan. Bake at 350 degrees for 30 minutes. Cool.
(For those of you on Weight Watchers, this cake serves 12 and each serving is 3 points, more or less depending on the brand of cake mix used.)




Naomi Judd's Spicy Hot Fruit Punch

3 cinnamon sticks
1 Tablespoon whole cloves
1 1/2 teaspoons whole allspice
2 1/4 cups pineapple juice
2 cups cranberry juice
1 3/4 cups water
1/2 cup packed brown sugar
1/3 teaspoon salt

In the coffee basket of a glass percolator, place cinnamon sticks, cloves and allspice. In the percolator, stir together pinapple juice, cranberry juice, water, brown sugar and salt to dissolve sugar. Place the percolator, covered, over medium-high heat and bring to a boil. Perk for 5 minutes. Serve hot.




Microwave Leche Quemada (Burned Milk Fudge)

Don't let the name fool you - this is a simple and delicious fudge recipe, great for holidays or anytime!

2 cups pecans (small or broken pieces)
1/2 cup sweet butter
2/3 cup brown sugar, firmly packed
1 can (14 oz.) sweetened condensed milk
1 teaspoon vanilla

Place pecans on large glass plate and microwave at HIGH for 8 minutes, stirring at 2 minute intervals. Set aside.
In 8-cup bowl, microwave butter on HIGH for 1 minute. Stir in brown sugar and milk until blended. Microwave on HIGH for 7 minutes, stirring at 2 minute intervals. Beat with wooden spoon until stiff, about 5 minutes. Stir in vanilla and roasted pecans. Spread in lightly buttered 8 inch square pan; chill until firm. Cut into squares. Yield: 1 1/2 lbs.




Pina Colada Wedges
8 oz. cream cheese, softened
2 Tablespoons rum OR 1/2 teaspoon rum extract
3 1/2 cups thawed Cool Whip
8 1/4 oz. crushed pineapple
2 2/3 cups (7 oz.) coconut

Beat cream cheese with sugar and rum until smooth. Fold in 2 cups of Cool Whip, pineapple (with syrup) and 2 cups coconut.
Spread in 8 inch layer pan lined with plastic wrap. Invert onto serving plate; remove pan and wrap. Spread remaining Cool Whip on top and sprinkle with remaining coconut.
Freeze until firm, about 2 hours. Cut into wedges and garnish.




Mini Quiches
2 eggs
1/3 cup milk
4 oz. cheddar cheese
4 oz. diced green chiles (canned)
10 oz. package Hungry Jack Biscuits

Separate dough into 20 pieces. Place each piece of dough into a greased muffin tin. Mix together eggs, milk, cheese and chiles. Spoon 1 Tablespoon of the mixture on top of the dough. Bake 20 minutes at 375 degrees. Maybe be frozen after baked.




Foolproof Chocolate Cake
1 SuperMoist Chocolate Fudge Cake Mix
1 small box chocolate instant pudding
1 small carton sour cream
4 eggs
1 small package chocolate chips
1/2 cup oil
1/2 cup warm water

Mix all ingredients together thoroughly. Pour into Bundt cake pan sprayed with Pam. Bake at 350 degrees for 45 minutes.




Hot Berry Dessert
Spread 2 cups of berries (boysenberries work great) over bottom of a 9" square pan.
Mix together:
3 Tbls. butter
1/2 cup of half & half
1 Tbls. baking powder
1/8 tsp. nutmeg
3/4 cup sugar
1 cup flour
1/4 tsp. salt

Spread batter over the berries.

Mix together:
1 cup sugar
1 Tbls. cornstarch

Sprinke over the batter. Pour 1 cup of boiling water over the batter. DO NOT STIR.
Bake at 350 degrees for 1 hour.
Serve warm - especially good with vanilla ice cream.





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