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The Benefits of Journaling
While on antibiotic therapy
Communication between a physician and patient is critical. Without it, the doctor is handicapped in making determinations about testing, treatment, and protocol adjustments necessary to insure a successful treatment. One doctor remarked that those patients who were unable to accurately describe disease changes were more likely to fail antibiotic treatment or to discontinue treatment before seeing improvement.
It is not necessary to have extensive medical knowledge to accurately inform your physician about changes in your condition.
You need to know:
- Something about your body and how it works,
- Something about your disease and how it works
- Which changes are significant and need to be reported to your doctor.
Information prevents panic when symptoms change, warns us of an impending flare, and assists us in controlling these ups and downs.
Keeping a journal is really the first step in understanding the pattern of your disease. It is particularly important at the onset of disease, a change in disease pattern or a change in a particular treatment.
All rheumatic diseases have certain disease characteristics, but all patients have an individual pattern within those characteristics.
It is extremely important that you learn to understand your individual patterns. You can learn them faster and better than anyone else. Once learned, a particular pattern is an important guide to help both you and your doctor in adjusting your treatment to minimize discomfort, predict flares and adjust medication.
A journal should consistently report the variation in disease symptoms and in the events and elements which can affect your disease. One important cycle that rheumatic patients get caught up in is the cycle of fatigue/tension/pain. Once caught, it becomes a downward spiral and must be broken to again establish equilibrium. Being aware of it and being able to spot it through entries in your journal can save you a lot of pain, loss of sleep and depression and allow you to take action to break the cycle.
A journal needs to record the following items as they pertain to you: These are divided into categories for easy recognition of physical symptoms, emotional symptoms, and outside influences.
PHYSICAL
Fatigue/ lethargy
Degree of pain
Appetite changes
Sleep or disrupted sleep patterns
Vision changes
Mobility/range of motion changes
Energy level
Weight changes
EMOTIONAL
Depression/irritability
Memory or concentration difficulties
Stress (both good and bad)
OTHER INFLUENCES
Effects of weather change (barometer, humidity, extreme temperatures)
Unusual activity or significant increase in activity, changes in diet
Change in medication or dosage (prescribed or over the counter)
Journal entries need to be consistent and accurate, but they do not need to be lengthy. They can be entered on a calendar, done in a chart form or entered in a diary. The important thing is to enter the data periodically, perhaps daily during a flare and otherwise weekly, monthly or prior to a doctor's appointment; review it and look for patterns. Then, take it with you to your doctor's appointment.
Looking for patterns means seeing relationships between symptoms and the things which may lessen or make those symptoms worse. For instance, do you have more pain or discomfort before of during a dropping of the barometer? These are characteristics of stormy and unstable weather, which causes a change in the pressure within the body allowing the mycoplasma or infectious agent to be more active, thus causing the discomfort.
Likewise, some people, particularly those with stressful weekly schedules or a crisis, feel worse on the weekends or during vacations just as they are looking forward to being able to rest and relax. The reason is the body's reaction to stress. Many of us are able to persist or push off psychological effects when we know it is necessary (like having work responsibilities), but when the pressure is off our bodies physiologically, we may respond to the psychological factors of the earlier stress. It is a delayed reaction or let-down reaction.
Becoming aware of those trends or patterns allows you to plan and prepare for them so they are not so devastating. For instance, remaining indoors in air-conditioning lessens the effects of high humidity and dropping barometer. Knowing your reaction to stress allows you to plan for the let-down by setting aside Friday night or Saturday as a rest time doing little except resting and relaxing -- to give your body a chance to catch up. Then later, Saturday afternoon or Sunday, you can be much more active and enjoy it without paying a high price. If stress is found to be a particular trigger for you, you should examine your schedule priorities or you may even temporarily adjust your medication to help your body handle that problem.
If you can?t change a troublesome circumstance, change your attitude toward it.
Remember, all diseases have a pattern and all patterns vary with the individual. A journal along with lab tests is the best way for you and your doctor to find the particular pattern of your disease. Using that information, you can make the needed adjustments in your treatment to accommodate that pattern.
INFORMATION THAT WILL HELP YOUR DOCTOR
The information you provide your doctor about your disease will help him/her make a more accurate assessment of your disease, how it is responding to treatment and when (and how) that treatment needs to be adjusted. The following list is to help you learn to take note of important details about your disease.
Any change (increase or decrease) in the following:
1) Number of painful/tender joints
2) Number of swollen joints
3) Duration of morning stiffness, soreness
4) Changes in range of motion
5) Grip strength
6) Level of fatigue/lethargy, energy level
7) Degree of pain (while moving or at rest)
8) Fever
9) Coldness of extremities
10)Changes in appetite or diet
11)Changes in hair or nails
12)Changes in vision
13)Changes in bowel, bladder habits
14)Changes in sleep patterns
15)Changes in weight
16)Memory loss, loss in ability to concentrate
17)Depression, irritability
18)Headache, dizziness
19)Appearance (or disappearance) of nodules, tight skin, rashes, lumps, etc.
20)Any changes in medication (prescription, over-the-counter, vitamins, supplements)
21)Any changes in normal daily activity (vacation, yard work, stairs, painting, baby-sitting, difficulty in opening containers or buttoning buttons)
22)Are new symptoms constant or do they come and go?
23)Are you better or worse than your last doctors visit?
24)Do your medications seem to be working?
25)Are you feeling any side effects?
THE ROAD BACK FOUNDATION
The Road Back Foundation supports studies and clinical trials of antibiotics used in rheumatic disease, and provides the latest information on antibiotic therapy free of charge to patients and doctors around the world.
These activities are supported entirely by the generosity and gratitude of those we serve. RBF is a 501(c)3 not-for profit group; all of our officers and directors are unpaid volunteers. In the United States, your contribution is 100% tax deductible.
Based on over 50 years of anecdotal successes and now on official studies, it is hoped that research and the considerable dollars involved will begin to channel into an area of investigation that will prove beneficial to the many patients who are devastated by the rheumatic diseases. Visit our web site at www.roadback.org for more information about antibiotic therapy used in this context and to stay encouraged and optimistic while on the journey back to wellness. Our web site provides material for you to print and take to your physician. Please review the different areas of text and compile the information that you believe is important for your physician to read.
The Road Back Foundation does not engage in the practice of medicine. Consult with a physician to assess any medical treatment that is being considered. The Road Back Foundation encourages healthcare consumers to thoroughly investigate and understand all treatments and medications before proceeding. This material is for educational purposes only.
The Road Back Foundation
P.O. Box 410184
Cambridge, MA 02141
614-227-1556
www.roadback.org
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