It is a bit difficult to give too much
direct advice to newly diagnosed patients because Lupus can be so
different from one person to the next. Here are a few basic tips
however that are universal for all Lupus patients.
1. Get doctors that you can communicate well with. You will need a
primary, a Rheumatologist and depending on what organs are involved,
perhaps a neurologist, cardiologist, dermatologist, nephrologists,
etc. Your primary can refer you to a Rheumatologist and they will
refer you to any other specialist you need. It is important that you
are comfortable and confident in your doctors. If you are not, find
another one. Ask lots of questions! Keep a list of questions to take
to doctor's visits with you.
2. As a Lupus patient the best thing you can do for yourself is to
get educated about everything health related. Visit
Cure4Lupus.org/other_lupus_sites.htm
and Cure4Lupus.org/links.htm for a list of
resources. Study everything you can about Lupus, nutrition, pain
management, related conditions, and anything related to your body.
There may be things you can do such as eating better, exercise,
taking care of other conditions, balancing your hormones, etc. that
can minimize Lupus symptoms as well as give a clearer picture of
what is actually going on with the Lupus. There are so many
different symptoms of Lupus that can be caused by other things. If
you rule out other conditions you can treat the Lupus more
effectively.
3. The goal of Lupus treatment right now is to avoid flares when
possible and shorten them when they do occur. There are many things
that can cause flares. You should try to identify what triggers
flares in you. Possible triggers include stress, illness, sun
exposure, etc. The best way to help you do this is to keep a journal
of your symptoms, what makes them better or worse, and possible
triggers.
4. Balance activity and rest. This is a VERY difficult thing to do!
Exercise and rest are both very important but too much of either can
start a cycle of inactivity and eventually de-conditioning or even
initiate a flare.
5. Educate your family and friends. This area is especially
difficult. Many times family and friends just do not understand what
it is like for you. With loving intentions they can be insensitive,
expect too much of you, and they can push too hard. Family members
may think you are lazy, not trying hard enough, just don't want to
do things, or just want attention. The best way to combat this is
just to do your best to inform and educate them.
6. Get as much support as you can! You will need a network of
support from family, friends and others experiencing the same
difficulties. There are support groups in most cities, you can find
out more by going to www.lupus.org and clicking on Find Local
Resources. It is very important to be able to talk about what you
are going through with others who are dealing with the same things!
You can also do this via message
boards, chats, etc. on the Internet.
7. Do what you can to raise awareness and support research to find a
cure. We all need to speak up and let the world know that 40 years
with no advancement in treatments is not OK. You can do this in
many, many ways. You can do it with
Lupus awareness merchandise, by
writing to your legislators,
spreading the word to those you come into contact with, voting for
politicians who support Lupus issues, donating time and/or money to
Lupus organizations and research and much more! Things will not
change if we keep quiet.
8. Visit a therapist/Psychiatrist.
Depression and psychosis can both be actual symptoms of Lupus but
much more commonly just the stresses and difficulties of dealing
with chronic illness can cause depression and anxiety which worsen
the actual symptoms. Having someone to talk to and perhaps
medications can make a world of difference!
