One Step Two Step Fall and Get Up

Published July 22, 2014 by silentlyheardonce

Originally posted on Us Verses Lupus:

sleepToday I woke up and wanted to go back to sleep but I had to make myself get up before I pee on myself. I waited too long, I had to shower anyway. I’ll be going out today but I won’t be walking around the school. I’ve been walking for about two months trying to shed some pounds. I’ve been getting up with the birds. Well the ones that over sleep. This way I can walk while it’s still cool outside. It’s refreshing to watch the sun come up and I really like walking despite my knees throbbing and wobbling. I like it despite my ankles screaming from carrying my weight. I like it despite

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I’m Who I am Until I’m Not

Published July 21, 2014 by silentlyheardonce

wrote this in response to Ben Naga’s poem Brass Tacks go check it out.

I wish I didn’t but tearfully I remember
a time when I didn’t know any better
saying mean things, without thinking twice
I was attractive, I was ugly, I wasn’t nice

who was that wretched person back then?
hope I’m never that uncouth and evil again
insecure and lonely was an empty excuse
to free my tongue and lash verbal abuse
it was me until and I wasn’t that person
I was foolish, I was ignorant, I was young

I knew better than to be vile and unkind
it was the drugs that made me blind
no that’s not true, it’s a falsehood, a lie
I was a vindictive bitch, before I got high
it was my disgusting and sinful behavior
until my cold empty heart I found, in me, a savior
nurturing my world with sincere love and passion
now I’m caring, I’m thoughtful, I’m compassion

I’m who I am until I’m not
one who gives gentleness a shot

 

©Kimberly Wilhelmina Floria 7/21/14

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Lupus and Children

Published July 21, 2014 by silentlyheardonce

silentlyheardonce:

Lupus and children

Originally posted on Us Verses Lupus:

Google images photo shopped

Google images photo shopped

Lupus is difficult to diagnosis in adults imagine being a child with symptoms. Children with lupus would have to avoid playing in the sun and wearing protective clothes. This child will have to live with the stigma and ridicule from their peers because of unsightly rashes. This child would be in pain and fatigue often. Lupus is devastating for adults imagine what it is like for a child.


I was one of those children and because lupus wasn’t common, widely known or understood I went undiagnosed for forty eight years. My mom had lupus and I knew since I was fourteen based on her symptoms that I had lupus.
I believe I had discord lupus which is skin lupus. Because I went undiagnosed my whole life it developed into S.L.E Lupus.


According to the Boston Children Hospital back in the 1950’s children only had a…

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Healing Steps

Published July 19, 2014 by silentlyheardonce

silentlyheardonce:

I’m walking early in the mornings. It inspired a poem.

Originally posted on Us Verses Lupus:

walking sign

sleep doesn’t come easy any more
sad, but it’s a fact. that’s for sure
just as the dozing gets good
the birds wake like they should
as first light pours through the window
I make myself rise from the pillow
yesterday’s pain subsided today
for good I hope, it’s gone away
morning routine done and completed
I can do the exercise that’s needed
The sky is bright and clear
I take in early morning air
pedometer on, ready and set
I won’t walk the track yet
around the high school I go
It doesn’t matter that I’m slow
I’m on a health mission
while lupus is in remission
once, twice and a moment to rest
completing four rounds is my best
it’s up to my sciatic back
if tomorrow I top that
tears and excruciating pain
I endure for my personal gain
I will be successful, it’s not just talk

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Walking for a Cure for Lupus

Published July 18, 2014 by silentlyheardonce

silentlyheardonce:

Anything you can give will help us get closer to finding a cure, a test that will diagnosis lupus more effectively and/or drugs that will help us feel healthy, normal or stronger. So please anything you can give.

Originally posted on Us Verses Lupus:

Welcome to My Personal Page
Support Kimberly!
Join Kimberly’s Team!
Us Verses Lupus team page

On October 18th, I will be participating in the New York City Walk with Us to Cure Lupus. Join me in the quest to find a cure for lupus by making a pledge on my behalf, or registering to walk beside me.

The Alliance for Lupus Research’s (ALR) Walk with Us to Cure Lupus is a national fundraising program that changes lives and brings people together in the common goal to find a cure for lupus.

Lupus is a devastating autoimmune disease that affects an estimated 1.5 million Americans, making the disease more common than leukemia, muscular dystrophy, cerebral palsy, multiple sclerosis and cystic fibrosis. The exact cause of lupus is unknown and there is no known cure.

I choose to walk with ALR because of its commitment to prevent, treat and cure lupus. Since…

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Would You Save a Life?

Published July 17, 2014 by silentlyheardonce

Originally posted on Us Verses Lupus:

On July 15, 2014 I attended a clinical tail meeting with Lupus Research Institute LRI. The meeting was hosted by Diane Grossberg she was on a fact finding mission. She wanted to know what we as patients with lupus knew about the clinical trials. And how we felt about them. We all had basic knowledge. She explained that there are several types of trials. Clinical trials, observation trails and they all have different phases. It can talk a long time before a drug or treatment is ready for human testing.

Before the testing on lupus patients testing is done in the healthy population. This is to determine the side effects. Small sample groups are tested before the researchers are confident to test on larger groups of people. She informed us that although Benlysta is on the market  yet it is still in a trial phase. They are reviewing the long-term…

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If You Need Me

Published July 16, 2014 by silentlyheardonce

Originally posted on Us Verses Lupus:

New York, NY the city so bad they named it twice. I know everyone is in a hurry, hustling and bustling here and there where the rich, middle class and poor mingle on the same streets. It’s that energy makes me feel alive when I visit the city. New Yorkers are distinctive breed and I’m proud to be a native even if I live in Queens. We are trend setters in our style of dress, hair designs and NY flare called attitude. We are innovators and truly unique. Find a seat at time, day or night and become mesmerized by the sights of the concrete dwellers.

On Tuesday after five years and ten months of living with lupus I climbed aboard my Access -A-Ride bus  (AAR) and went to the New York S.L.E. Lupus Foundation  located in Midtown Manhattan. To attend my fist support group meeting. I went…

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