Welcome to my lupus
forum.
I would
like this chance to introduce myself.
My name is
Elizabeth.
and I have lupus
This
is my story
I
am thirty eight years old. I am married to a
wonderful man, Craig, for the past seventeen
years. I have three beautiful children. My
daughter Danette is twenty-one and a
beautiful young woman. My son Jason is
eightteen and is a super young man. And I
have my little angel, Lane, who is my joy. I
am a Catholic, and believe in the healing
love of Jesus, and also in all my angels. I
live in South Louisianna.
I
was diagnosed two years ago for Lupus and
fibromyalgia, after a long illness with my
thyriod which led to removal of half my
thyriod. Since the surgery I never really
regained my strength or my health,and
continue to be in a major lupus flair.
I
am the facilitator for the Acadiana Lupus
Support Group, which is a chapter of the
Lupus Foundation of America,which consist of
a five parish{county}area. That is alot of
lupus ground to cover. I also edit a monthly
Lupus newsletter for our area and am active
at getting the lupus word out to the public
so this is my story, this is how it all
began..
"The
bad news is you have lupus."
I
didn't know whether to be happy that someone
had finally found out what was wrong with me,
or to be devastated to learn that I had
Lupus, among everything else that I was going
through at the time. All I knew was I was
sick, and I was tired of being sick. I didn't
have a clue what lupus was, or that it was
responsible for most of the physical problems
I was having.
I
am only thirty-eight years old, and I felt
like I was eighty. I was a healthy, energetic
young woman with a husband, three children, a
job, a new home, and a social life. Then like
a thief in the night, lupus completely robbed
my family and I of life the way we knew it. I
didn't want to believe this was happening to
me, especially since I had been through so
much else. I honestly couldn't bear one more
drop. My cup was definitely running over.
After
I left the doctors office I went to a local
bookstore and bought the only book on lupus
they had, went home and read that I had a
chronic, life threatening disease with no
cure and little treatment options.
WOW!
What an eye opener that was. All of a sudden,
the missing pieces started to fit. All the
unexplained symptoms took on new meaning, and
I then realized I had this disabling disease.
The
first thing I did was educate myself on this
chronic, life changing illness, and it's
treatment. I learned that lupus is very
common. It affects almost 500,000 people,
mostly woman. The treatments are few, and
there is no cure.
The
more I learn about lupus, the more I am
learning about myself, what I am capable of
and what makes me very sick. It is hard to be
my age and suddenly realize you have severe
limitations in every area of your life. Even
the simplest of things can put you in bed for
days.
I
love to garden, but even that began to affect
my health. I found I couldn't take the heat,
and any little bit of exertion left me weak
and exhausted. All of a sudden I couldn't
work, I had to leave my job that I loved, I
wasn't able to clean my house like I was used
to, I found my self on the sofa more and more
throughout the day. Even folding a load of
laundry would leave me exhausted.
I
tried to explain to the doctor how bad the
fatigue was, and how it was affecting my
daily life to such extremes, but face it, if
you haven't been in those shoes you can't
begin to understand how devastating it is.
I'm not blaming the doctor's, but I felt like
I wasn't believed like I should of been. It
always seemed that the quick answer to all my
symptoms was stress. I would leave the office
in tears, usually not knowing anymore than I
did before the appointment.
Of
course I would come home and have to tell my
husband they didn't know what was wrong. It
was definitely a time of unbelievable stress
and it began to put a serious stain on my
marriage and relationship with my children,
especially my seventeen-year-old son.
Suddenly I wasn't able to go to all his
football games, or participate in the school
functions like I had done before. I found
myself often telling him, "not now, mom
doesn't feel good." I believe that my
illness was the deciding factor in my son
moving away from home. That in itself
devastated me, since my twenty-year-old
daughter had left the year before.
I
felt completely abandoned and unloved. That's
when the depression set in. I found myself
thinking I was destroying my family's lives,
and they would be better off not having to
worry about me. That my husband needed a
whole wife, that my two-year-old son needed a
mom whom could take care of him, to be able
to take him to the park, and read to him at
night.
I
started imagining ways to end my life. I
remember praying that I would rather be dead
than to live this way. I cried all the time,
stopped seeing friends, and buried myself in
my house. My life consisted of depression,
disorder, constant pain, and fast food.
When
I would look in the mirror I didnt even
reconize myself,for gaining twenty
pounds,from the prednisone, didn't do alot
for my self-esteem. I hated myself for being
sick, I hated my family for deserting me, I
hated my body for betraying me, and I hated
my husband for not believing and comforting
me.
Although
he said he understood, I knew he was having a
hard time dealing with the ever changing,
daily complaints. Our marriage was on the
brink of disaster. There was no talking, no
hugs, no making love, it's hard to feel sexy
when you're in constant pain and you are
twenty pounds heavier.
Of
course I know now that being completely
depleted of estrogen played a major role in
the way I felt. Going through menopause at
thirty-five was not easy to deal with. I was
also having problems with my thyroid, and was
diagnosed with hypothyroidism and had a
thyroidectomy and now am taking thyriod
replacement.
I
feel like my whole life was stolen from me.
Everything is different, so I have had to
learn to adjust to different situations, and
find solutions to the unexpected.
I
have to learn how to control this illness, or
it will control me. I have to retrain myself
in how to live, how to do daily household
chores, how to make it through an ordinary
day without collapsing on the couch every
thirty minutes. I have to stop and remind
myself everyday, sometimes every hour, that I
have limitations. That it's okay to rest,
it's okay to leave things until later.
Things
don't have to be perfect. I have to let go of
the guilt, and frustration of not being the
wife and mother I was before I became ill.
I
need to believe I am loved, regardless of the
extra weight or my changed appearance. I need
to learn to live one day at a time and to
live each day to the fullest. Enjoy each
moment for what it is, and not compare it to
what it was.
It
hasn't been easy, having lupus has been the
most difficult thing I have ever had to go
through, I sometimes feel I'm fighting a
losing battle with forces stronger than I am,
but I am determined to make it.
We,
who are fighting this and other chronic
diseases, are fighting for our lives. We need
not fight alone. We need to have a caring,
competent doctor who specializes in our
illness, and understands the multitude of
ever-changing symptoms, and is willing to
treat us with compassion and respect.
We
need our families to understand and be
willing to help us reprioritize our lives. We
also need a circle of friends to be there
when we need a shoulder or just
companionship.
But
most of all, we need have faith, because
without faith we will not succeed.
My
goal is to take you along with me on a
healing journey. I am not an expert in
medicine, but I am an expert in suffering,
and surviving. I would like to help you
survive too.
It's
not a easy journey, there are roadblocks and
detours along the way, but the journey can be
a good learning experience, for us and our
loved ones.
It
won't happen over night, but with patience
and perseverance we can triumph and be
victorious instead of victims.
And
so ends my story, or is it just beginning?
