"THE LOVE OF FAMILY AND FRIENDS IS THE GREATEST HEALING THERAPY OF ALL."


Listening to your body and recording what it tells you

Communicating effectively with healthcare providers

Learning about a condition: Finding resources to educate and support

Establishing a healthcare plan and getting your providers to accept it

Preventing problems and knowing how to solve them before crises occur

Understanding your healthcare system, including knowing your rights
and how to approach insurance, hospital, or other issues

Planning for hospitalization: Knowing what to do and what traps to avoid

Participating in research: What to consider

Extending your health philosophy to the world outside the medical system

Parenting a child with medical challenges and dealing with educators

Helping a mentally competent family member or friend

Assuming the responsibilities of decision-making for a parent or other adult
who cannot make their own decisions

Additional information on advocacy is available via the top navigation bar, including
Q&A, services I offer, and resources beyond this website. Let me know what helps you,
what may be unclear, and what we can improve.

Check back as we expand this section based on your feedback and additional research.

I. Listening to your body and recording what it tells you

No one knows your body better than you do if you listen to it. For many people in good
health, this may be as simple as paying attention to how it responds to changes in season,
diet, sleep, or temporary illness such as a cold.

Sneezing and runny nose in summer that disappear after the first frost often reflect an
allergy to a plant killed by cold weather. Your job is to tell your doctor about the
problem and listen what they believe is wrong (the diagnosis) and what they recommend.
Your next job is to make decisions on tests and treatment. You live with the decision;
your body experiences the positive and negative effects. Listen thoughtfully, but don’t
let someone push you into the decision they would make.

Sometimes it isn’t easy to describe the problem. Headaches are common, but there are
many types and people can have different types under different circumstances. Consider
Paula, who began to have headaches after she moved away from home to attend school.
(Paula’s story is made-up but typical for migraine headaches.)

Paula’s headaches started suddenly and involved the right side of her head. The pain was
throbbing, and she felt sick on her stomach. The first time, she couldn’t bear the light in
the library and had to jog back to her room to lie down after closing window shades.
Pain medication didn’t help, but she was a little better after sleeping. She went to bed
early that night, and the next morning the headache was gone.

Over time she had more. She wasn’t sure what to tell a doctor so she decided to try
something for three weeks: She wrote down information on her calendar. Below is the
record log for three days in October, when she had mid-term examinations.

• Studied until 2am, didn’t sleep well. Missed breakfast. Bad headache started near end of
English exam. Vomited before getting back to dorm. Better after sleeping. Went to bed
right after dinner.

• Mild, largely right-sided headache throughout day but went to classes and worked job
at cafeteria. Light seemed bright. Got to bed around midnight.

• Up at 5am to study. Made it through math exam but severe headache started on way
back to dorm. Sleeping didn’t help. Very sensitive to light—even shades down didn’t
help. Maxed out on aspirin without relief.

Paula’s log contains some valuable information to share with the doctor:

She knows the frequency of her headaches

She can describe their character and severity

She may have identified some triggers.

She was under exam stress for two of the three weeks and she was sleep deprived
frequently. In addition, her eating was irregular during exam week.

Moreover, by recording events associated with each headache (school tests, in this case),
Paula is more likely to remember additional details of the headache and the day on
which it occurred when the doctor asks questions.

I recommend recording problems in the simplest form that allows you to document
details such as severity, frequency, and circumstances/triggers. Make a key to your
problem (such as HA for headache, 1-10 for pain severity) and record information each
day.  Women may want to record the first day of each menstrual period. Once there is a
diagnosis, people can mark the day they start a medication, when they change dose, or
when their pharmacy switches from brand name to generic or from one generic to
another. Record dates of physical therapy, IV or radiation therapy, or other treatment.
Finally, record any problem that may be a possible side effect (such as nausea, diarrhea,
or rash that lasts more than a day or two) or that may signal something new associated
with your condition. When in doubt, write it down.

For many people, a calendar works for space per day and the ability to look at a week
or month of information to spot trends. If you are trying to lose weight, consider a
food/exercise log; both paper versions and software are available. You can count calories
easily and evaluate long-term balance in food intake, as well as estimate the number of
calories burned in exercise. If you have diabetes, you may want to use either a paper or
software program that allows you to enter food/exercise information plus blood sugar
levels and timing and dose of medication or insulin.

Keep your record logs. I completed and filed calendars for years until my headaches
(a form of seizure) were not a problem anymore, and I began logging information again
before I became pregnant in case they came back.

If you have a chronic disease such as diabetes or epilepsy or a serious one such as cancer,
make permanent space for your logs. Over time, add information from your healthcare
providers such as test results, appointment notes, etc. so you have access to the
information you record and the information recorded by others.

Building a complete medical record is important. It can be particularly valuable to be
familiar with the information in records from providers and hospitals. You cannot count
on someone else to find errors or missing information. If mistakes exist and you do not
get them corrected, a future provider may read that information, assume it is correct, and
make a decision that can hurt you.

Recording your symptoms is like throwing a stone into water. You understand your body
better, an initial ripple that enables you to talk effectively with doctors and other
providers. The next outward ripple is their ability to form sound ideas about diagnostic
tests and treatments. This in turn allows you to make informed decisions about what to
do. As you listen to how your body responds to treatment, ripples spread farther,
hopefully in a way that gets you the best care and long-term results.

You don’t need to know what your symptoms and problems mean medically, but you
do want to know as much as possible and explain it as clearly as possible. When you are
polite, informed and determined, you are more likely to be treated with the dignity and
active partnership you deserve. You are more likely to quickly identify providers you
want on your healthcare team and those who are not a good match.

II. Communicating effectively with healthcare providers

The need for patients to express themselves clearly, accurately, and as briefly as possible
is vital because doctors see more and more office patients per day and have less time for
each.

Several tips can improve the effectiveness of communication with healthcare providers,
particularly those whom you do not know well or who are not familiar with your current
problem.

Consider using a checklist for an appointment with a specialist or other new provider and
a follow-up checklist for each later appointment, as well as making and maintaining a
medication list (We have samples of all three types of lists for you).

Take the checklist, medication list, and your personal log to each appointment: Read
them before you see the nurse or doctor so you can focus on what you want most to get
out of the appointment. Make sure before you leave that you know who to contact with
any questions and the best way (telephone, e-mail) to reach them.

Take a deep breath before you begin an appointment, especially with a new doctor.
People generally make the best impression when they are calm and clear in what they
say. Bringing your materials shows you are prepared and want to be a partner in your
healthcare, not someone who waits passively to be told what to do. Remember the best
approach usually is to explain, not to complain.

If you need to mention a problem in your medical past, be clear as possible about what
happened: Give facts and try not to blame anyone. If you had a significant relationship
problem with a doctor or other provider, try to explain why: They could not accept your
decision regarding treatment, they were not willing to share records and results with you
on a routine basis, etc. These are problems that can be explained as mismatches between
in philosophy or style: They are not accusations. There may be times you need to
confront a provider, but that is a last step and one that virtually guarantees the end of a
relationship. Explaining yourself and giving the provider a chance to explain can go a
long way in establishing good relationships and mending problems before they become
significant.

One particular challenge in communication occurs when patients bring outside medical
materials, such as information given by a friend or obtained from the Internet, and want
to talk about it with their doctor. When I was an intern, I was always nervous when a
patient came with papers in hand and said they wanted to tell me something or they had
figured out what to do…. In contrast, I felt comfortable if the patient said they had done
some research and found something that might be helpful.

The Healing Woman discussion on finding information resources is in Food for the Mind,
including a tutorial on finding material on the Internet, evaluating whether it is likely to
be helpful, and considering how to effectively present it to your doctor or other provider
for discussion (
click here).

Again, remember to think in advance about what you want to say and what you hope to
get from your provider: If possible, let them know before the appointment what you
want to discuss (this is often done best through a telephone call or e-mail to their contact
person).  Remember, in the same way you do not want to feel pressured or surprised,
neither does your doctor or other provider. If you can send your materials in advance
(always make sure the source of information is on the printed material), do so. That way
less time is lost from your appointment before you can begin a discussion. It also gives
the provider a chance to research any questions raised by the material.


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