Often times people who live with daily pain
also have at least one chronic illness they are dealing with
and many have multiple diseases/conditions that cause pain.
Having a chronic illness may sometimes make us feel less
independent and have less say about aspects of our daily lives.
But, we do have a say about our health care!
Taking back control of your life from pain or a chronic illness, as well as
taking charge of your health care itself, requires you to be an active
participant in your health care. Taking on a 'partnership' role with your health
care providers will give you a greater sense of control and can help you become
a decision maker in the types of treatments for your condition. All too often,
those of us who are ill take a passive role in our health care and feel as if we
have no choices. We do have choices... and we do have rights. Here are some
suggestions to help you get to the point where you feel empowered in your health
management.
Document
Your Pain. Use the Personalized Pain Scale and the detailed Patient's Pain
Report for Physicians as tools to communicate your pain with your physician.
But it is also important to keep a journal/log of specific symptoms that occur
between appointments.
Write
down any questions for your Doctor. Jot down your questions as they
occur to you. Since short-term memory problems are common with chronic pain and
some chronic illnesses, this is a very important aspect of taking charge of your
health care. If you have a long list, you may consider faxing the questions in
advance
Take
someone into the doctor's office with you. This person can be your note taker
while you are getting your questions answered and also provide objective
opinions about how the appointment went.
Get
Copies of Test Results. Ask your doctors for copies of all test results
and for all correspondence between doctors. This is key to knowing how you are
doing and to understanding what your doctor's interpretation of your tests and
symptoms are.
Be
a Knowledgeable Consumer. Learn as much information as you can about
your condition from your health care providers, support groups, and health
associations. Be willing to share with your physician any new treatments,
research, or health notices that you may have read concerning your condition.
Follow
your doctors advice. It is very important to follow your doctors
advice medications, exercise, rest, etc. Do not self medicate. Your doctor will
be much more willing to discuss additional refills if s/he knows that you are a
responsible patient. If you are having difficulties with any aspects of the
treatment plan your doctor has set out for you, call her/him and let them know
what the issues are. It's best to let them know as soon as possible if there are
problems with medications or even with an exercise regimen.
Be
assertive. If you belie that you are not getting the health care you
should, let your health care provider know. If the problem is with a specialist,
discuss it first with your primary care physician and ask to be referred to
another specialist. If the problem is with your primary care physician, discuss
your concerns openly. Give your doctor a chance to explain his/her treatment
plan. If you are still not satisfied, then begin a search for another physician
that better suits your needs and personality. Physicians are our paid advisors
to guide us through a path to better health, if you are dissatisfied, you have a
right to seek care elsewhere.
Know
you medications. Ask your pharmacist for information about your
medications. Keep a list of all medications, including over the counter medications,
and their dosages. Take this list to your appointments for your doctors records.
Also, it's a good idea to give a current copy of your medications and dosages to
the person who is your emergency contact. Be sure to keep this list updated.
Be
as active as you can be. We all need to feel like we contribute. Doing
even minor tasks can take a lot out of us. Plan your activities so that you can
take short rests as you need them. NOTE: If your physician has limited your
activities, you should always check with him/her before starting any new physical
activity.
Keep
a journal. This can be an especially useful tool in writing down your
questions for your doctor. Also, it can assist you in documenting dates if you
are applying for SSD/WC and show what you can and can't do on a daily basis.
Journals can also be a stress reliever. By writing down the problems and our
feelings about them, we can help to release tension and stress. Lastly, it can
also help us to see how many good days we are having. Sometimes when we are
really down, we think that all we've had are bad days. Be sure to log those good
days too.
Join
a Support Group. Become involved in a group such as an online
support group or a local Pain/Condition Support Group. You can contact your
local hospital for information about their support groups.
Enjoy
as much of life as your condition will allow. Make
a list of things you can do. Then find a way to do one thing
on your list every day. Find new hobbies that
you can do to take your mind off your pain/illness. Games can be an excellent
distraction, require very little physical activity and will keep you from
feeling isolated from friends and family. Online chat rooms can also be a
wonderful distraction. For information about our forum click
here.
To join our support
group, place your eMail address in the space provided below. You will receive your membership information in your
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best suits you. Your options are:
- Receive every one of our groups messages
in your eMail box,
- Receive a Daily Digest of messages, or
- Read all the messages at our message boards.