Practical tips for living with lupus.

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Practical tips for living with

lupus.

Dealing with

your doctor

You'll often find that you have things you want to

ask the doctor,

but when you get there you forget. Make a list of

symptoms that you

are having & of any questions you want to ask

the doctor before you

go, & take this list with you.

If you don't understand anything the doctor says,

or you want

something explained, don't be afraid to ask. If

you really don't want

to ask the doctor, sneak to the nurse afterwards.

If you have a GP that doesn't understand lupus,

try to educate

him/her by giving him/her literature on SLE.

If you find that you aren't getting anywhere with

your GP (or

specialist), & feel that it's a constant

battle to get the treatment

you are entitled to, change to another doctor. If

the problem is with

your GP- is there another doctor in the practice

you can see? You

don't have to always see the GP you're registered

with at that

practice. If you still have no luck, change to

another surgery. (UK)

To do this just go along to the surgery of your

choice & tell the

receptionist that you want to transfer there. (You

can find out the

name of a sympathetic doctor in your area by

speaking to someone

locally who has lupus-find them at a local support

group meeting or

get in touch with your local contact.) If you have

trouble finding a

doctor who has room on their list, contact your

local Family Health

Services Authority, who will have a list of all

GPs in your area who

have room on their lists.

If the problem is with your specialist- contact

Lupus UK, who may be

able to recommend a lupus specialist in your area.

You may have to

travel further afield to find a good lupus

specialist though. Explain

to your GP about the problems you are having &

ask if you can

transfer to another specialist.

Managing pain

Try using a TENs machine. These work by blocking

the pain signals

sent to the brain, & are completely safe, but

don't always work for

everybody. Ask your doctor if he/she knows of

anywhere in your area

that you can hire one from to see if it works,

before buying one.

Rest! Even if you can't sleep, just lying down

& resting can help to

ease the pain. Learn a relaxation technique, or

get a relaxation tape

to play.

Use heat or cold treatments. Heat is soothing

& helps promote muscle

relaxation - try a hot water bottle or heat pack.

Cold has a numbing

effect - try a bag of ice wrapped in a towel

(guard against frostbite

or burns, especially if there are circulatory

problems).

Sun & UV

light

Many lupus patients experience problems after they

have been exposed

to sunlight, or UV light (from fluorescent lights,

halogen lights,

computer monitors).

Wear a high factor sunscreen (SPF 15+) whenever

you are outside, even

if it is cloudy-the UV rays penetrate the clouds.

Lupus patients can

get sunscreen on prescription (UK), just ask your

doctor (Uvistat

Ultrablock is one of the best). Wear long sleeved

clothing & a hat

when out in the sun, the most protective clothing

is made from

fabrics that have a close weave. If you have

problems when using a

monitor, buy a UV filter screen, & also wear

sunscreen. Casings &

filters can be bought to cover UV lighting.

Avoid the sun when it's at it's strongest -

10am-3pm. Ultraviolet

rays reflected from snow, water, sand, glass &

cement are more

intense.

Help with

sleeping problems

Many lupus patients have difficulty getting to

sleep & staying

asleep. This can be due to a number of things -

steroids can make a

person 'hyper' & unable to sleep; pain can

keep you awake; many lupus

patients also have fibromyalgia, which can cause

sleep disturbance.

Take a long relaxing bath (not too hot) before

bedtime, preferably

with essential oils such as lavender in the water.

Have a warm milky drink before bedtime. Eat a

banana - this contains

substances which can help induce sleep. Don't eat

a heavy meal before

bedtime.

Put a few drops of a relaxing essential oil, such

as lavender, on

your pillow.

Other tips

Find out what benefits you are entitled to, even

if you're working

you may be able to get something. Read the

benefits article.

Avoid alcohol!

Alcohol can interact with anti-inflammatory drugs &

steroids to cause significant gastrointestinal

problems such as

peptic ulcer or gastritis. It can also interact

with sedatives &

narcotic painkillers to amplify their effects.

Don't smoke!

Tobacco has negative effects on the cardiovascular

system, lung & stomach. Lupus patients are

particularly prone to

vascular problems such as Raynaud's phenomena,

which tobacco can

greatly exacerbate. Medication induced stomach

problems are also

significantly worsened by tobacco use.

Avoid

loneliness.

Many people with lupus feel isolated & alone, due

to the nature of the illness - they can't go out

because of the pain

& fatigue. Yet meeting other lupus sufferers

can help immensely, just

being able to talk to someone who knows what you

are going through.

Join your local lupus support group, you don't

have to go to every

meeting, & you may meet someone who lives

nearby, who you can meet up

with away from the group.

Much Love,

Deanna

LUPUS Serenity Prayer...

Lord,

grant me the serenity to accept the things I cannot change, the courage to change

the things I can, and the wisdom to hide the bodies of doctors I shot when they

said, You're perfectly healthy, it's all in your head "