Learning to Manage your Care

Chronic Rheumatic Illness requires learning how to accept and manage chronic symptoms.   Part of my job as your coach is to assist you by diagnosing, treating, teaching and integrating with your other providers.  However, we have limitations in what we are able to do.  We rarely have simple answers for complex symptoms such as, “What is causing my fatigue? or pain?” and I rarely have time to explore all symptoms and questions at each visit.  We can not send lab results and other information back to you prior to your follow-up visit and we don’t refill scheduled medications over the phone.  I can advise, educate, encourage and push, but I can't manage your care for you.    Your success in becoming confident in managing your illness is critical to our overall success.  I hope the following comments will help you get the most out your visits with me, and help you learn care for yourself better between our visits.

DEVELOPING CONFIDENCE
IN SELF CARE:

1. You need to understand your insurance plan, formulary options for medications, authorizations required for referrals, etc.  You will have to ADVOCATE for yourself.   I know persons who can help you deal with medical bills and insurance companies.
2. Please create and bring to each visit your MEDICAL NOTEBOOK.  This can be a loose leaf notebook for you to keep papers in.   For each visit you will need to:
   1. Provide a list of all medications and supplements you are taking, and maintain a list of all meds ever tried.   I suggest you list them starting with the back page.   You should list the name, date, dosage amount, benefits and or side effects, and the date discontinued.
   2. List all questions and issues you want discussed for the visit.  I need to see the whole picture at the beginning.
   3. Bring copies of tests and reports from all of your providers.  Also, bring their addresses, phone numbers, and fax numbers if you want me to coordinate with them.
   4. Share source documents you read about new or different therapies.
   5. Tell me what you think caused/ is causing your symptoms and any recommendations for changes that you would like me to consider.
   6. You should create a summary of your health problems, results of consultations from other physicians and therapists, therapies tried, and goals for the year ahead.
3. Every person should consider hiring a Chronic Disease Management Counselor to help you deal with emotional and coping issues, pain management, depression or grief, stress and anxiety issues, relationship changes, work and vocational concerns, financial and lifestyle problems, and care of the soul and spiritual needs.  This may be a professional of a variety of backgrounds, but it shouldn’t be a friend or relative.
4. Please consider attending a Group Education or support program such as the Arthritis Self-Management group.
5. Also see booklet on this site: Chronic Illness Management "Handbook"

Online Resources

Acupuncture

The American Academy of Medical Acupuncture

Diet and Nutrition

Nutrition.gov

Alternative and Complementary Therapies

• National Center or Complementary/Alternative Medicine
   

• Holistice Online

Mind/Body/Spirit

Mind Body Medical Institute 

Awareness Therapy Through Movement

Feldenkries

Applied Psychophysiology and  Biofeedback

Biofeedback

Emotional Well-being

Mental Health Infosource

Physical Therapy

American Physical Therapy Association