Cristy Kessler should be dead. The fact that she's not is because
she took charge of her own medical care. When she took it upon
herself to find out why she had spent her lifetime battling pain
and illness, Kessler embarked upon a journey of discovery in which
she endured multiple treatments and procedures that resolved some,
but not all, of her issues. Finally, armed with a diagnosis of
multiple autoimmune diseases, she took charge and, with the help of
a powerful team of doctors, Kessler identified the treatment that
could save her life, a treatment denied by her insurance company
and prohibited in the United States by the FDA. As Michael Seres,
author of the blog, "Being a Patient Isn't Easy," and a transplant
survivor himself, says in the Foreword, "With her book, she has
been able to articulate in a very simple way the critical steps
that every patient living with a long-term condition should abide
by. She writes with complete honesty and lovely touches of
humour....this is a book every single patient should read at least
once. And, if you are a clinician, then this should be on your
bookshelf or on your laptop as a constant reminder of the paths and
decisions...patients have to take." Throughout her medical journey,
Kessler developed the skills and strategies necessary to act as her
own patient advocate, which, in the end, saved her life. Speaking
directly to her readers, Kessler describes the five STEPS toward
taking control of your health care with the assistance and support
of a network of medical experts, family, and friends. Sensibility.
Kessler urges you to pay attention to what your body is telling you
and to record and describe symptoms carefully so that the doctor
knows everything necessary for appropriate care. Most importantly,
she says you must refuse to let anyone-even a doctor-dismiss your
symptoms. Teamwork. Kessler urges you to take full responsibility
for leading your team of doctors to make certain they are all
working together, not at cross purposes. Don't be afraid to change
doctors if you need to. Put together a support network of family,
friends, colleagues who can do for you what you cannot do for
yourself. Education. This is a critical aspect in directing your
medical team. Kessler advises you to do research and to use the
Internet wisely to investigate symptoms and treatment and to share
information collaboratively and respectfully with your doctors.
Educate your support network; don't keep secrets about your
condition from the people who mean the most to you. Let them walk
with you on your journey. Patience and Perseverance. Kessler
acknowledges that being a "patient patient" is not always easy, but
she urges you to find a balance between waiting calmly and
recognizing when to act on something urgent in your life and
circumstances. Ask questions you need answers to, be patient when
you need to, and always persevere toward your objective of getting
the best possible treatment available - no matter where it might
be. Sustainability. Finally, Kessler insists that you are
responsible for sustaining your body, mind, and spirit.
Sustainability takes many forms. Whether it is through your faith
or through personal and social networks, it is important to meet
the needs of your whole self. Find a reason to get out of bed every
day and find ways to pay it forward. Find one thing you can make
time for each day that provides you with joy. In this genuinely
compelling, honestly scripted, and engaging chronicle of her
medical and personal journey, Kessler shares those strategies for
others to use when faced with difficult medical situations.
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