Managing a Chronic Illness
by Carolyn Weller, R.N., originally
published in "Scleroderma Voice," 2002 #1
Editor's note: You can skip directly to the subheads
that interest you, by clicking on these links:
Dealing
with a chronic illness on a daily basis is a challenge in
itself, not to mention adding the additional stress of juggling
your medical care.
Every
day I have conversations with people from all over the country.
They share with me their frustrations in trying to coordinate
visits to three or more physicians, therapy, diagnostic and
lab tests, and multiple medication changes.
This
scenario does not even include trying to balance family issues.
If
this story sounds all too familiar, keep in mind you are not
alone in this daily struggle! There are ways to stay organized.
I would like to offer you some simple tools that could ease
your stress and help you make the most out of your doctor
appointments.
Stop
Me if You've Heard This One Before
Let's see if this
scenario sounds familiar.
You have been sitting
in a crowded waiting room for a while, and now the hands on
the clock show a time well past your scheduled appointment.
After what seems
like an eternity, you are finally led to an examining room,
where again you wait for an extended period of time.
When the doctor finally
arrives, you feel relieved—but the time he spends with
you seems far too brief. After all, it has been 3–6 months,
or longer, since you last had a visit. You have so much to
talk about!
Unfortunately, all
the questions you wanted to discuss with the doctor seem to
flee away, and you can hardly remember a single one. The discussion
goes in a different direction than you had planned.
Later you arrive
home with a new prescription, unsure what good it is supposed
to do you, and how long it will take for these good things
to happen.
Now the questions
you had for the doctor filter back into the forefront of your
mind. The whole experience seems like a vicious circle, and
leaves you feeling bewildered.
Tips
for Patients
First let me say
that none of this is meant to criticize physicians, by any
stretch of the imagination.
Keep in mind that
certain physician specialties—rheumatologists in particular—are
in short supply. As a result, your doctors may be dealing
with overloaded patient schedules in an attempt to accommodate
as many patients in need as they can.
This may mean that
visits with your physicians are not as long as you would like.
It is all the more
important that you make the most out of your visits by being
the best patient that you can be!
Keep
a Notebook with You for Easy Reference
Every patient under
the care of a physician should keep a tablet or notebook handy
to jot down questions or concerns that arise between visits
with the physician.
Just before a visit,
take out your list of issues and prioritize it. Which of these
concerns are most important to you?
Number them if necessary,
to keep them straight.
On the day of your
appointment, take that list with you and keep it in your hands
for easy reference. Many patients have a great deal of anxiety
related to their doctor's appointments, making it difficult
to keep a clear head. The list will serve as a written point
of reference, a cue card if you will.
Be
Sure to Set Your Priorities
Depending on the
number of questions and concerns you have, please keep in
mind it may not be realistic to expect your doctor to address
every single one during the brief appointment time you will
have together. You must be reasonable in your expectations.
So try to number
your priorities. Think about getting answers to the top three
to five questions on the list, as a starting point or goal
for the visit.
Depending on the
types of questions that you ask—obviously if they lend
themselves to quick, concrete answers the process will go
quicker—you may end up being able to ask additional questions.
However, if your
questions are open-ended and do not lend themselves to a simple
answer, you may not even get through the first few.
If you do not get
through all your questions, please do not see this as a failure.
Putting things in perspective, realize that your previous
appointments may not have been as effective as this one. Look
at the appointment as a victory, and consider other resources
to find the answers you want.
Your
Nurse Is a Valuable Resource
Don't forget your
physician's nurse as a valuable resource for information about
your care. Nurses are a key part of your healthcare team.
Nurses can give you information that may add to or clarify
the discussion you had with your physician. They may also
be capable of giving you written instructions or literature
to help you to put all the pieces of the puzzle together.
Nurses work hand-in-hand
with physicians to provide you with the best possible care.
They are an important resource for you.
Keep
Accurate Medical Records
Another way to make
the most of your appoint ments is to keep accurate medical
records.
I realize you may
be under the care of multiple physicians. Just trying to keep
all of their names straight may be a challenge.
You can organize
your physicians' names, addresses, specialties, and phone
numbers, etc., with other pertinent medical information, in
a notebook—or better still, in your computer where you
can make updates as needed.
Before an appointment
you can make copies of your relevant files, such as medica
tions, to share with your physician.
Create
a Document that Covers All the Basics of Your Medical Situation
Create a basic medical
reference document for yourself. This can be a very valuable
tool, not only for your own guidance, but also for your family
and the medical professionals you deal with.
This document will
also serve as your emergency medical information. Make sure
to carry a copy in your purse, and that your loved one or
caregiver has access to a copy in the event you are not capable
of speaking for yourself. Some people choose to keep a copy
on the refrigerator so it is easily visible.
What
Information to Put in Your Personal Medical Document
This will be a completely
individualized process, and you should not feel there is a
right or wrong way to do it. Please keep in mind that the
following is a suggested format. You can tailor this to fit
your special needs.
There are also software
programs available for the purpose of keeping accurate medical
records. Use the search words "software for personal
medical history" on your favorite Internet search engine.
You may also find
preprinted books for the same purpose.
Here is my suggested
format.
Your Name, Address,
and Phone Emergency Contacts
Medical Insurances:
Include Primary/Secondary with all necessary account numbers.
Physician List:
Be sure to include specialty, address, and phone number.
Medical Conditions:
Examples: CREST syndrome,
seasonal allergies, asthma, Sjögrens Syndrome.
Medication List:
It is imperative that it include the
most up-to-date dosages and frequency. Examples: "Acetaminophen
500 mg, 2 tablets, every 4–6 hours as needed." Don't
forget to list any over-the-counter vitamins, supplements,
or herbal remedies you may be taking. Note: Be sure
to discuss all vitamins, supplements, and herbal remedies
with your doctor before starting to use them, so he can warn
you of any potential interactions with your other medications.
You may want to keep a separate list of medications that you
have taken in the past but are no longer on, and the reasons
they were discontinued. Example: "Methotrexate
was discontinued due to abnormal lab values."
Allergies:
List all allergies to medications, tape, topical preparations
such as iodine, and any foods. You should do this in bold
red letters so it cannot be missed by anyone on your healthcare
team.
Surgeries/Procedures:
Include major surgeries as well as scopes and biopsies.
Laboratory
and Diagnostic Testing: You may want to keep a record
of when you had your last pulmonary function tests, electrocardiogram,
blood work, etc.
Over
time, you will find the tools that work the best for your
personality type, as well as the personality type of your
physician. It may be a trial-and-error process. Remember,
there is no single best way to manage a chronic illness. This
article is a starting point.
I
sincerely hope you have found the suggestions in this article
helpful. Please use them as tools to make the most of the
time spent with your doctor, and to help you become the best
patient you can be! |
