what if we had a standard (official) form for our docs to fill out so that we could let our family members know what Lupus is like, how serious it can be, how unpredictable-- It would have to be short bc we cant expect people who may or may not be supportive...maybe we could get a card no bigger than a calling card or driver's license long with a pamphlet so we could carry it with us and present it to people who wonder what we can and cant do
I would like to have mine state:
Janice B has Lupus;
it has affected her:
cardiovascular system__
pulmonary
nervous system, and cognitive skills
vision, hearing,
bones, joints, connective tissue,
and skin and psycho- social skills;
these are the things that she may have to use from time to time; to increase mobility. please know that what she needs one day may not apply the next. For example: it is not uncommon to need a walker one day, and the day may not have to use itas much. To learn more please go to .....
walker, cane , wheel chair or crutches,
braces,
protection for sun
as well as quick pain relievers such as patches or creams for joint pain, ice or hot packs, massage cushion etc.
but the thing she needs more than any of the things mentioned above is for you who care for her to know that you Lupus is unpredictable; that the things she could or could not do yesterday or an hour ago could either get a lot or a lot worse in a the blink of an eye. She needs you to know that the changeable nature of Lupus frustrates her as much as it frustrates and confuses you.
What we know about Lupus is that stress makes it worse,
rest makes it better, being able to talk about it helps, having people to talk to about pain, meds, exercise and what works and what hinders
for more info please read blah blah blah
One sure thing about Lupus and that is that just as you think it is well understood and under control, it changes.
please work with us as a team: patients, health care providers, friends and families working together with the scientific community to be open minded, alert, aware and most of all, to have hope; remember. it was not so long ago that small pox and polio were devastating to so many , but no longer worry about those diseases as much as before.; let's work together to make Lupus an illness that we don't have to worry about as well.