Joined: 04 Feb 2006 Posts: 2 Location: Elk Grove, CA
Introducing Myself, Long Post! Posted: 03-24-06 22:29pm
Hi, my name's heidi and i'm 21 years old.
I was recently diagnosed with lupus in
november 05. It was pretty sudden, I
wasn't feeling to good in october and had
some swelling and joint pains. I never
had any serious illnesses before, and when
it didn't go away I went to see a doctor.
After two visits, and the swelling and
pain getting worst. The doctor ordered
some blood tests, but the results took a
week. I didn't even make it that week, I
was in so much pain I went in to see my
doctor again. Not all my labs were back
yet, but the ones that were showed up
abnormal. I was also very anemic. Not
sure what was going on, my doctor told me
I needed to be admitted into the hospital
immediately. I was then hooked up to an
iv and changed into a hospital gown
awaiting the ambulance.
I was then transfered and admitted into
the hospital down the street. When I
first arrived, they still weren't sure
what was going on. They told me I either
had rhumatoid arthristis or possibly
lupus. I had no idea what lupus was, and
no one in my family has it either. My
first night at the hospital, they ran a
bunch of tests. And I found out I had an
ulcer from all the anti-inflammatory meds.
My legs, and arms were like balloons and
I could barely walk or move. I stayed in
the hospital for five days and I was
diagnosed with lupus. I also had issues
with my heart rate and breathing. On top
of all that, I had a urinary tract
infection. I was put on iron tablets,
prednisone, prilosec, cipro, and
lopressor. After a week in the hospital,
the swelling went down and I was
feeling/doing a lot better. I was
released from the hospital.
I was only home for a day, when I woke up
the next morning having trouble breathing
and my heart was racing. My mom brought
me back to the er. Apparently, I wasn't
given enough prednisone even after I asked
my doc if all my prescriptions were
correct. Without the meds for a day, it
threw my body off course and I went into
another flare. This time, I stayed 4
days. Then I got my correct medication,
and I was doing feeling better again. I
got to go home.
But a week later, I woke up again with
trouble breathing. This time, I had
chest pains and it hurt to breath. I was
rushed again to the er. They ran some
more tests, and scan's. It was a little
bit different this time though, they found
a blood clot in my left lung. After some
more blood tests, they found out I had the
antiphospholipid syndrome. Blood
clotting issues. I was put on lovenox
shots that I had to take on my stomach
twice a day. And coumadin was also added
to my prescription list. This time, I
stayed in the hospital another four days
and was released on thanksgiving day.
I haven't been back into the hospital
since, except for doctor visits or blood
tests. Through the whole ordeal though,
I lost a lot of hair to the point where
you could see my scalp. I even got a few
wigs, and i'm happy to say though my hair
is starting to grow back. So I am
excited about that.
I have been feeling a lot better lately,
but just got a new medication added to the
mix today. I'm currently on; prilosec,
prednisone, plaquenil, lopressor,
coumadin, and the newest cellcept.
I also have a appointment next week to see
a dermatologist, because I have a horrible
rash on my face. Anyone have any
suggestions for that? It's soo itchy and
dry that I don't know what to do. The
sun makes it worst too, and i've been
wearing sunblock or staying indoors.
Anyhow, sorry for the long post! I just
thought i'd introduce myself, since i've
been lurking on this forum for a while.
It's definately nice to meet other people
who understand lupus and all the
medications. It's somewhat hard talking
to and explaining it to my family because
it's all new and i'm not quite sure they
really do understand even though I know
they try.
Thanks for listening.
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Snugglecat
New User, Becoming EHEALTHy
Joined: 02 Jun 2006 Posts: 5 Location: canada
I'm New to This Forum Too Posted: 06-02-06 23:17pm
I'm new here too, but i've been dealing
with my lupus for a few years now. I've
only recently begun to develop the
butterfly rash on my face and have found
that using a lotion that contains zinc and
a high spf sunblock for face specifically,
have really helped me.
If in doubt, put in a quick call to either
your dr or your pharmacist. They are
there to help. It's what they are
trained for. I have a great relationship
with my pharmacist and he has been a great
help finding lotions etc.
Take care of yourself
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FNAjill
New User, Becoming EHEALTHy
Joined: 12 Jun 2006 Posts: 4 Location: New Jersey
Posted: 06-12-06 15:33pm
I am new to this forum too. I was
diagnosed with lupus almost two years ago
and have been struggling to find some
answers since! I seem to have a milder
case than you, but I thought I would share
with you my findings, maybe they can help
you too.
I have flet from the beginning of my
symptoms that food affected this disease
in some way. Often eating certain things
or eating too much made my inflammation
worse, etc...I always felt bloated and
uncomfortable, and very very rarely had
any bowel movements. So I started
researching diets and auto-immune
diseases, specifically lupus. I came
across one womans story that led me to a
Dr. In nj named Dr. Fuhrman.
Fortunately for me I live in nj so I have
been able to visit him. He has put me on
a strict diet, that I have been following
for about 3 months now. So far I feel
great! And I have reduced my meds
(plaquinil)..With the goal to eventually
be off of it all together.
I am not saying that diet should
necessarily replace your medication, but I
do know that it has worked for many
people, and is worth looking into. It
may sound crazy, and I know that most
doctors do not believe that your diet has
any affect on your lupus, but it doesnt
seem like they know much else about this
disease either! I suggest that you check
out Dr. Fuhrman's book "eat to live", and
consider if it might help you. There is
lots of information out there about the
whole diet-autoimmune issue....Worth doing
some research.
So far, it has helped me, and I hope that
by sharing my info it might help someone
else!
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Petiesperson
New User, Becoming EHEALTHy
Joined: 26 Apr 2006 Posts: 8 Location: Missouri
Posted: 06-18-06 19:56pm
I have been in remission from lupus for
two years but I had a long battle with
lupus.
I too recommend dr fuhrmans book "eat to
live". Nutrition is of utmost
importance. You might also read "the
china study" by t. Colin campbell...Its
a very important book which
comprehensively covers the implications of
diet and health.
Whether a person is dealing with a chronic
illness or not I suggest they cut out
processed foods, soda and artificial
sugar...Go easy on the red meat.