Living With Lupus - My personal story
By Lisa Maria Datcher


CONTENTS

Introduction message

B.D. Before the Diagnosis

A.D. After the Diagnosis

What is Lupus?

The Drama

Coping


The following text is not filled with flowery text and beautiful imagery. It is however, filled with pure emotion
from my heart with the hopes that you will feel just a pinch of what those of us who suffer from this disease
feels each and every day. I have made a commitment to myself that I would do everything in my power to
spread the word about LUPUS so that more funds can be allocated for research study. We have lost and will
continue to lose our loved ones to this mysterious disease unless a cure is found soon. Please, take a
moment to familiarize yourself with what this disease is and the pain it causes the sufferer and their loved
ones. Chances are, you know someone who lives with or has died of LUPUS.

Thank you and may God continue to bless each of you with strength and wisdom.

BEFORE DIAGNOSIS



It was 1993, Indian summer. A beautiful, balmy evening and I had just arrived to my mother's house after attending a baby shower of Donna, one of my best friends. I was sitting down on the couch, Indian style as I told Momma about the shower. We talked for a few hours, exchanged good nights and I fell asleep. The next morning, I noticed an annoying ache in my ankles. I figured it must have
been the way I sat the night before so I didn't think anymore of it. I continued my day as I normally would
making note that this ache was still lingering. I asked momma for some aspirin and she asked me if I was
o.k. I told her I was fine other than these aches. So I kissed her on her cheek and made my way to run errands. I spent the majority of the day out and when I returned, I was extremely tired. I nestled on my favorite sofa again and fell off to sleep. The next morning I knew something definitely was wrong. I thought my neck had broken during my sleep because I couldn't move it. That is how extreme that pain was! I remember crying out and seeing momma and my brother running in the living room. They helped me get
into an upright position and I remember the excruciating pain I felt. My entire body felt so stiff like I had been
in an accident.

Momma called my doctor and made an appointment that morning. My doctor took my vitals and went through
the normalties of a doctors visit. He asked me if I had any changes in my health recently. After thinking about
it, I told him that I noticed that I had been feeling unusually tired and had aches in my legs from time to time. I have had these aches since 7th grade because I used to run all of the time. I just figured I was tired because
I was an active person. He performed lab work to try and pin-point the source of my problem. He said that
he wanted me to take some time off so that my body could get adequate rest. At that point, I was scared as
h**l because nobody could tell me anything concrete. I was a stay in school student at the time and I started
working part-time. I thought to myself great. The school year is just starting and I can't go. Frustrated
with the long waiting, I began calling my doctor for results. He said he needed to run additional tests
because nothing was definitive. He managed to throw out two possibilities he thought could be the problem. Rheumatoid Arthritis and Multiple Sclerosis. I must be dreaming. This could NOT be. I was young and cute. I was in school determined to make something of myself so I know d**n well this couldn't be happening to me. No, not Lisa, not now. Mad as h**l, I decided to give that doctor the boot and I find another one which I did.

This new doctor of internal medicine gave me a series of tests including lab work too. He told me that he
wanted to pay close attention to the ANA test. I didn't know ANA from DNA, I just wanted to know what was going on NOW! Two weeks went by when the new doctor contacted me to come to his office. I felt that sick feeling you get in your stomach when you know something is wrong. When I arrived to his office he gave me the news that changed my life forever.

Ms. Datcher, your lab results are positive for LUPUS.

LUPUS. LUPUS. LUPUS. LUPUS.

That word echoed in my head.


AFTER DIAGNOSIS


LUPUS. How in the world did this happen? No. This quack is wrong. There ain't no way that I
have anybody's LUPUS and this sorry doctor is not going to make me believe it. I stormed out of the
office in pain and numb. I headed back to my mother's house and learned she had already received the news. Momma was optimistic so she had already planned how everything was going to be alright.

Everything wasn't going to be alright. See, I had already researched autoimmune diseases and arthritis
after the first doctor offered his hypothesis. I read about symptoms, treatments and prognosis.

Back in the day physicians gave LUPUS patients 10 years and BAM that was it-time for a permanent dirt nap.
Fortunately, with technology and more advanced medicine, the prognosis has changed for many LUPUS patients where some of them can live pretty normal lives. The doctor provided me with literature that illustrated what LUPUS is and what issues I may face with this disease. I have been hospitalized 5 times for LUPUS related illnesses. The most severe being pleurisy and then pneumonia. The pleurisy episode was the worst episode I have ever had. Every time I took a step, every time I breathed- it was dreadfully painful. I had to drive myself to the hospital and I still don't know to this day how I managed to do so without GOD.

The triage nurse told me my temperature was 103.5 degrees and I was immediately admitted. After intense
therapy of antibiotics and prednisone, I began to feel better.

The hardest thing for me upon diagnosis was accepting that I had to live with this. I denied it for a long,
long time. Because of this denial, I would refuse to take the medicine because there was no way I was going to gain anymore weight. My stubbornness resulted in my barely being able to walk and care for myself. I tried with all of my might to fight this on my own but it was much too powerful. My efforts to return to school and work backfired in my face.

I had to give up my apartment and move back home with my mother. Just as fast as I traveled to the top of
the world, I witnessed my world crumble right in front of my eyes and there wasn't a thing I could
do about it but watch.


WHAT IS LUPUS?


LUPUS is known as the Great Imitator. It is coined as such because it is very hard to diagnose. It is an
autoimmune disorder in that your healthy cells attack themselves (auto) thus resulting in joint and organ
damage. The internet has a wealth of information about LUPUS.

http://www.lupus.org/



The Department of Health and Human Services, Health Resources and Services Administration (HRSA, Maternal and Child Health Bureau recently issued a report entitled Women's Health USA 2002.
The report lists lupus as a leading cause of morbidity among women. The HRSA report follows a study
released last month by the Centers for Disease Control and Prevention (CDC) that showed a 60% increase in deaths over a twenty-year period resulting from systemic lupus erythematosus (SLE). The CDC report also revealed that women were five times more likely to die from complications of lupus than were men.

Sandra Raymond, President and CEO of the Lupus Foundation of America (LFA) issued the following statement in response to the HRSA Report.

The HRSA report confirms that lupus is a significant health issue for women in the United States.

Unfortunately, federal funding for lupus-related medical research, public awareness, and professional education programs remains low in proportion to the disease's impact on society. Lupus deserves a coordinated and comprehensive response by the federal government.

We still do not know what causes lupus, and no new therapies have been approved in several decades
to treat the disease. Current funding for medical research on lupus is insufficient to properly study a disease
that is so diverse and complex.

The LFA has urged the Congress to adopt its three-pronged program to:

· Provide greatly increased funds for the National Institutes of Health to expand lupus-related research
efforts across all relevant institutes.


B. Establish a Federal Working Group on Lupus to coordinate activities of federal agencies and
departments as they relate to lupus.

C· Establish a National Lupus Patient Registry to conduct epidemiological and burden-of-illness studies
to determine the overall prevalence of the disease and its cost to society.

The Lupus Foundation of America estimates that at least 1.4 million Americans have a form of lupus. Nine
of ten cases of lupus are among women, with the highest prevalence among women of color. African Americans, Hispanics, Asians, and Native Americans are two or three times more likely to develop lupus than are Caucasian women. Lupus causes the immune system to attack the body's own cells.
Common symptoms of lupus include achy or swollen joints, fevers, fatigue, and skin rashes.

The Lupus Foundation of America is the nation's leading non-profit voluntary health organization
dedicated to lupus, with more than 50 chapters and hundreds of community-based support groups located
throughout the United States. The LFA seeks to improve the diagnosis and treatment of lupus, support
individuals and families affected by the disease, increase awareness of lupus among health professionals
and the public, and find the cure.


HRSA report available at: http://mchb.hrsa.gov/data/women.htm


THE DRAMA
This part of my story is the RAW, UNCUT, UNEDITED VERSION of emotions and limitations I have
experienced as a result of LUPUS. I feel compelled to be explicit about what I have experienced because I am sure other LUPUS sufferers share some of the same and some unfortunately have experienced much worse. Unless you have lived with the pain and limitations resulting from LUPUS, it is IMPOSSIBLE to know how we feel. People who are ignorant to the disease may sometimes view the LUPUS
sufferer as lazy and/or anti-social. THAT IS SIMPLY UNTRUE. Some employers don't understand and frankly, many of them don't care. We long for energy and stamina! We want to skip through the fields, play outside with our kids and enjoy all of the beauty life has to offer.

UNFORTUNATELY, this disease when active, limits what we can do no matter how much we try.

I have had fits of rage, premonitions of death, voices in my head taunting me to kill myself. Sometimes I
feel like I am in an emotional battlefield with no ammunition. I am unsure how I am going to feel from day
to day and day to day I am afraid. I am afraid that at any given moment, my medication will no longer be
effective and that I will be confined to my bed or hospitalized. I am extremely embarrassed when I am
experiencing a flare because I hate to ask for help. Often, I secretly wonder if people notice when I limp or when I have trouble using my hands. There have been times that my hands were so swollen and numb that I could barely wash myself or wipe my own behind after I used the restroom. As I think back, I recall one winter night I thought I was going to freeze to death because I just could not get up to adjust the temperature. My blanket had fallen on the floor and the only comfort I had was a thin sheet that I managed to pull over me with my teeth. Driving was increasingly difficult during the onset of a flare as was getting in and out of the vehicle.

There have been times where I have literally fallen down in the bathroom and in the tub because I lost balance.

My body is laden from bruises as a result of my falls. These feelings of helplessness disgust me with all
of my heart because it takes me to a place I have tried to forget but can't. The place it takes me to is
my late mother's house-her bathroom to be exact. Crystal clear is the image of the awful, helpless look in my late mother's face when she became so weak she couldn't help herself and relied on me to wash and clean her. I reluctantly remember the look of shame momma had and the look of her not wanting to be a burden on me. I loved momma more than life but I hated her for being sick. I know that sounds harsh but it was the truth. I was angry at Momma for not being the Momma I remember. She too
hated falling ill because she ALWAYS cared for herself and everyone around her. I simply LOATHED seeing her so week and feeble and every time I hurt, I am reminded of that look in her face. Sometimes, I wished I would never wake up again because the pain is too much for me to handle. I feel like my dreams are merely pipe dreams. Sometimes I feel like I am the ugliest creature on earth with fluid
pockets and fat everywhere. During flares my already thin hair thins even more. I look awful in my clothes and I sometimes won't go to work or out because I hate how I look and feel. I am afraid that one day I won't be able to work. How will I survive? What benefits and resources are available and will they be enough? SOMETIMES I WOULD LOOK IN THE MIRROR AND I HEAR VOICES SAY LISA, YOU ARE
A UGLY FAT LOSER AND YOUR DAYS ARE NUMBERED. Then the voices mock me and utter things like,
WHO ARE YOU TRYING TO FOOL? YOU WILL NEVER BE ANYTHING! YOU WILL NEVER LOSE WEIGHT SO
WHY DON'T YOU DO EVERYONE A FAVOR AND VANISH.. NO ONE WOULD EVEN NOTICE YOU ARE GONE.

Then I cry. Sometimes I cry myself to sleep. Other times, I have to dope myself up WITH sleeping pills
just so that I can go to sleep. Sometimes I am afraid to sleep and sometimes I am afraid to wake up.

Please somebody help me.

Please!?!


COPING


It has been 9 years now that I have lived with LUPUS. It has been like a pendulum from one extreme to the
next with the flares and emotional roller coaster rides. There have been ups and downs, good and bad days,
smiles and tears. I lost the desire to complete my college education-12 credits shy of my degree. I just
could not muster the will to go back and finish. In hindsight, part of me is disappointed in my decision but I
have to live with it and I can. I am working full time and up until two weeks ago I held a part-time position on
the weekends. My physician warned me long ago that if I did not let something go and get more rest my body
would pay. He was right on the money. I can recall getting off from work and being too exhausted to drive
home. I would park my car, lean my chair back and sleep. This was dangerous but it was not as dangerous
as my trying to drive home in such an exhausted state. I have learned through therapy and faith that we all
face trials within life and none of us, NONE OF US are exempt from pain and suffering. I continue my
medication and have incorporated exercise in my routine. There are times when I don't have the energy
to stay on the routine so I do what my body tells me to do and I rest. I continue to pray and stay as positive as
I can. It isn't easy and there are times I slip and fall into depression. That happens and will continue to
happen as long as the disease is active. I rely on my remaining family and best friends for support during
rough times.

Please, take time to learn about LUPUS.

So we can find a cure for LUPUS.

Our lives are depending on it.

















For additional information or to connect with others, please feel free to stop by my newly formed fighting
lupus group at the address listed below. I can be reached at leesalisa007@aol.com.



http://groups.aol.com/fightinglps

Each One. Reach One Teach One