I would first like to begin by telling you a little about myself.
My name is Lauren I am currently a Senior in High School. I was diagnosed with Lupus my freshman year, after many years
of testing and clinical follow up. Just that part in itself can be extremely frustrating. To know that there is something
wrong with you that makes you feel so different from everyone else, but to not know what it is. My mother had been diagnosed
with Lupus when I was 10 years old. After she finally was diagnosed she began to see signs in me that made her question whether
it was possible that I too had the disease. But she, like many others did not know it was possible for children
and teens to be affected because most of the information indicated adults were diagnosed. From the time I was two years
old I suffered from bruising, extreme headaches and what my mom referred to as "ghost fevers". I was tested
for brain tumors, leukemia and a series of other ailments. It wasn't until my mom was diagnosed did she start to question
the possibility of Lupus. So she spoke with her own doctors and asked them to evaluate me, which they did although they
felt at the time that we should wait until puberty to determine whether or not I would truly develop the disease. From
age 7 or 8 I started to develop blood clots. I have had approx 7 since then in several areas of my body. It
was during that time that my illness progressed that I was officially diagnosed. As those of us with Lupus know, Lupus
effects everyone differently. Mine causes me to suffer from blood clots, your basic pain in joints, muscles etc.., severe
headaches, extreme fatigue. Basically my target organ is my blood, and central nervous system.
All I ever wanted was to be a normal teenager. To be a normal anything. I have made
it my own personal challenge to never say why me?, or I can't do it because I have Lupus. Can't isn't in my
vocabulary anymore, it's been replaced by I will. I will not let this disease beat me. I will not let myself fall victim
to all it causes me endure. I am very active in school. Since my freshman year of high school I have been part of the schools
colorguard. Which in our school takes a lot of hours of hard work and dedication. We are currently ranked number #2
in the nation. We practice almost every day. It also includes two weeks of grueling band camp in the summer. I remember times
before a competition when I felt like my entire body couldn't move. There was so much pain I wondered how I would make it
through the show. But the moment I stepped out on the field and that rush came I knew there was no doubt I'd make it through. In
the three years I have completed there have been a few practices I have missed, but never a show.
My hardest challenge lies in the fact that no one truly understands the disease. But you know
what? Its not their job to learn about "my disease" what I have learned is it is my job to educate them so that those that
are closest to me can understand that as much as I hate to admit it, I do have my limits.
School in itself is a huge challenge. First of all I suffer from a learning disablitly that
causes me to have a difficult time with time, space and numbers. (Just a little Lupus trivia: people who have
lupus ie., my mother have a 90% chance of having children who suffer from a learning disablity), Both my brother and myself
do. The other biggest challenge lies in the fact that I miss so much school. I provide a note every year for the school that
helps with excused abscences but that doesn't mean that the teachers, administration, or my friends are very empathetic. To
the teachers and administration I'm an inconvenience. My friends don't understand how I can be fine one day and so sick the
next. I don't know how many times I have heard "you were fine yesterday". Well yeah thats the way this disease is. One day
things can be good and even within that same day things can change. You become sick, fever, pain and bamm your down again.
Some of my friends are afraid to get too close to me when I'm sick for fear I won't survive. Even as far as dating, its hard
to find someone who is understanding, supportive and lets face it wants to enter a relationship with someone who is ill. But..,
let me assure you. There are some wonderful guys out there and although they are few and far between it is possible to find
someone who will give you all that and more. Trust me I know.
The reason I decided to create this website is because there have been times when I have felt
like no one could possibly know what I am going through. No one can understand the challenges I face. There is still so little
information known about the disease. Even when I go to the doctors I feel as if they don't understand either. I want
this to develop into a network of support and information. If nothing else if there is one person who can read the information
on this site and gain hope, information or just the feeling that there are others who feel as they do then it is well worth
it. I am creating and attaching a link to a blog for people to post questions, concerns, feelings... whatever they want
to say. If I can I will research and find links to provide you with information on questions regarding the disease. Its
there to share emotions and feelings. To know you aren't alone. I will also post information on lupus, Education
scholarships and possible events that are coming up for lupus patients and their families. If you have any ideas of
what you would like to see in the site, please feel free to give your input. This isn't just my site, it's our site.
If you are having a hard time trying to make those around you understand what you are dealing with, send them the link and
let them read the information. Maybe through others they will gain insight and empathy and even a small understanding of how
this effects you.
Although every day we awaken to a challenge, we are blessed that we do awaken...That we have
been given atleast one more day to leave our footprints on the souls that surround us...
