1. Building a Collaborative Relationship with Your Doctor
Will someone be introducing us? Do you need bio or resume from me? My web site:
probably has anything needed for intro.
KLS Foundation 2018 Conference

2. 4 Invisible, Chronic Conditions Brain Surgery 2012
Diagnosed in Mid 1990’s
4 Invisible, Chronic Conditions
Brain Surgery 2012
Largely Regained Health
ABOUT JOY
How we are alike, how we are different. ALIKE-chronic condition, no known cause or cure, limited and uncertain treatment, so experimental relationship with doctor. I did regain health as KLS patients are likely to. Lifetime consequences to living with long term serious illness—some good, some bad. Hard to find physician with treatment experience.
DIFFERENT-rather than extended and unwilling sleep, poor and non-restorative sleep was major symptom, Hit at mid life rather than youth, so rather than disrupting school and social development, it disrupted career. Perhaps different issues of loss. 3 diagnosis, several overlapping conditions add to the complexity. None quite as rare. IC and MCTD poorly understood, Fibro not believed by many.
Later, had to make a choice whether or not to try brain surgery for trigeminal neuralgia. Fortunately a successful choice. Had already entered the School of Whatever Works, this surgery took it home.
Still lingering aspects. The occasional flare of symptoms, widespread pain. Stuck car analogy. Usually has to do with no reserve tank. Once on empty I begin to damage the engine.

3. You Don’t Look Sick: Living Well with Invisible Chronic Illness
Book Written with Physician in 2005
2nd Edition in 2012
4 Phases of Chronic Illness Journey
Doctor-Patient as Team/Partners
You Don’t Look Sick: Living Well with Invisible Chronic Illness
Said to doctor one day—I’m still sick but I don’t feel the same way about it. Our work together changed my attitude toward my illness and my life. Asked him to write book with me about our journey together.
Used index cards listing common symptoms and experiences to sort out flow of book and found 3 stages. We did a lot of speaking and Dr. O began applying the principles we wrote about in his practice. For the second edition, we took Grief and Acceptance and made this a phase, expanding to 4. Also made clear that this could wax and wane through all 4 phases.
The only book we have ever found that is co-written by a doctor and patient as equal partners. There are some in psychology, but not in physical illness. Part of the challenge of managing illness effectively and successfully is a perception that the doctor leads and the patient follows. We tried to show that each has a role and an essential contribution, and that the relationship, like the illness, changes through time, is not static.
Another challenge is the attitude that in America we fight illness, we beat illness. We do not make our peace with illness.

4. Finding the Right Doctor
Strategy Before & After Diagnosis
Quality Care—A Two Way Street
Firing A Doctor
Including an Advocate
Finding the Right Doctor
BEFORE DIAGNOSIS: Specialist tended to search for an explanation within his or her specialty. Internist will test, assess and refer. Told my internist, I know something is wrong, please stay with me until we have the answer. Afraid of dying before knowing what was killing me. Got first diagnosis after 7 years of searching, have learned this is not unusual. TN also diagnosed by Internist after many years and many dental procedures.
AFTER DIAGNOSIS: The right specialist for you—listens to you, believes you, is on time and respectful of your time. #1 has experience in your condition, or is curious and willing to do homework. Can you meet your role as well, what does doctor need from you?
QUALITY CARE: Know the limits, do your part, be prepared, try anything.
THREE STRIKES: Give the doc a chance, decide on your strike offenses.
INCLUDING AN ADVOCATE: Insurance or disability issues, brain fog, in a flare during appointment, complex conversation, need a note taker. Check your impressions, should this one be fired?

5. Accurate vs. Emotional Reporting Tracking Symptoms-Side Effects
Be Prepared
3 Questions
Accurate vs. Emotional Reporting
Tracking Symptoms-Side Effects
The Patient’s Role
Keep Meeting Report in computer and update for every appointment. Include at least—current medications, any new symptoms, treatments or side effects, space for questions. Take 2 copies to meeting.
In years of discovery and change, also offer annual report to all treating physicians. All treatments attempted, results, side effects, other interventions. Current condition, pending interventions. List all physician’s names and contact information.
If you are in crisis ask for longer than normal appointment. Otherwise, plan on 15 minutes, time for 3 questions. Think this through, write them down in your meeting report, make a copy for you and for Dr.
Your Dr. is not a therapist, if the center of your need is emotional, find that specialist. Don’t ask this of MD. No complaining.
Very important to accurately report your symptoms, treatment outcomes and side effects.