Tuesday, October 2, 2007

The Importance of Keeping a Health Journal

Over the years, I have had multiple symptoms for various conditions, and I have been evaluated by a variety of physicians for these symptoms and conditions. With this in mind, it is impossible for me to remember each symptom and its date of onset. Additionally, it is also impossible to remember all of the details surrounding the various conditions I am either diagnosed with, or the individual diagnostic tests and dates for numerous probable conditions that have been ruled out along the way. With respect to both symptoms and conditions, although I may remember the names of physicians who have evaluated me, I cannot rely on my memory for the dates of these visits or the outcomes. Therefore, although I have always prided myself on the ability to rely on my memory, I did discover that even the best memory is incapable of keeping track of all these issues. This is certainly true for someone who has been experiencing symptoms and searching for a diagnosis for any significant length of time.

Whether a patient has been diagnosed with a chronic condition or is still in the diagnosis process, keeping a health journal is a great way to document the patient’s health history. There are several benefits to keeping a health journal, which include the following:

1. Establishes a timeline for the initial onset of symptoms, which can be critical when seeking a diagnosis for certain conditions

2. Establishes a timeline for progression of symptoms as each new symptom is documented, or established symptoms worsen

3. Can be used as a tool for the patient to recall specific events that need to be discussed with a physician during an appointment

4. Can be used as a tool for physicians, if the patient has provided him / her a copy

5. Establishes a running history of diagnostic tests for conditions that have been ruled out or confirmed.

6. Establishes a running history of treatments for known conditions, as well as treatments for symptom alleviation where a cause has not yet been determined

7. Can be a great asset for the patient who is filing for disability benefits, again because it establishes a timeline and documents progression of the chronic condition

There are several methods that a patient can use when keeping a health journal. Some methods are better than others are, and I have tried quite a few. I now use a combination of two methods with respect to my journals, so I will share those methods. Essentially, there is not a right or wrong way to keep a journal as long as essential information is included. Some examples of essential information are:

1. Date of journal entry

2. Description of topic – new symptom, changes in established symptom, reaction to medication, outcome of a visit with a physician, etc.

3. Complete explanation about the topic which answers the basic questions of what, where, when, how, and why, although not all of these are applicable to every topic. (Example: Where was the patient when the new symptom emerged? How long did the new symptom last, or is it ongoing?)

4. Notations on telephone conversations with physicians or office personnel in the physician’s office – include date, time, topic, and follow-up information

The first type of health journal that I keep is a journal that I write in only as new issues come up. Although my symptoms change from day to day, I do not write in the journal daily, because the day-to-day changes in symptoms are typical of my condition. Actually, the symptoms can change from minute to minute, but again, this is typical for my condition. I use my journal to document new symptoms, changes in how my medications affect my symptoms, appointments with physicians, and any significant change in condition that may be of importance.

In the beginning, I began writing in the journal daily, but I found that this only added additional material for reading without offering additional benefit or information. Because I often will provide my Primary Care Physician with a copy of sections I think he needs to see, I wanted to insure that the amount written was not overwhelming. Therefore, by only writing about significant changes / events, I believe I increased the likelihood that my physician will take the time to read what I have provided to him. Besides, I am one of those people who just cannot stick to writing in a daily journal, regardless of the topic.

The second type of health journal is probably better referred to as a complete “list” of all health related issues. This “list” begins with my first surgery when I was seven years old, and it continues through today. Included on this list are major illnesses, symptoms, surgeries, medications (past and present), etc. I created this list in 2001; therefore, any information prior to 2001 came from memory recall. Although I am certain that there have been some omissions due to faulty memory, this list contains approximately 95% of all issues pertaining to my health. The following is a sample of how my health related issues are noted in this journal:

1976 – Tonsillectomy and Adenoid removal at 7 years old

1984 – Walking Pneumonia at 15 years old

1988 thru 1989 – First pregnancy w/ multiple complications including pre-term labor and premature delivery at 33 weeks gestation. 19-20 years old (Terbutaline prescribed throughout pregnancy for pre-term labor and Magnesium Sulfate administered in hospital to stop active labor at 26 weeks gestation.)

October 14, 2003 – While walking for exercise, I noticed that my right arm no longer swings while I walk.

Most of my health related entries are one-lined notations, with the exception of major surgeries or illnesses. My entire health history is now summarized in date order, on four pieces of paper. If more in depth information is required, my alternate journal can provide the additional details.

The benefit from this type of health journal or “list” is it enables me to hand my physician(s) a few sheets of paper that gives an almost complete history of my health. It provides the dates (approximate dates prior to 2001), the medical events, and the results if any. Not only does my journal (list) include my symptoms pertaining to my current diagnosis of Parkinsonism by date of onset, but it also includes unrelated symptoms and information, that may be of importance for a physician who is looking at the entire picture, when trying to make a more precise diagnosis. The physician may see an event on my list that occurred ten years ago, prior to the onset of my symptoms of Parkinsonism, which may actually have been an early potential indicator for one of the various forms of Parkinsonism. This entire picture may help my physician during the process of trying to determine which form of Parkinsonism I have.

I maintain my journals on my computer and keep a printed copy in my own personal medical file. I have found that by using the computer, I can print out specific entries easily, to forward to my physician(s) as needed. If I am ever unsure of an event related to my health, I have easy access to my history. Additionally, based on the methods I use, it takes very little time to add new information to the journals. The little extra effort to track my medical health accurately through my two journals became a great asset during my diagnosis process. I have the security of knowing that I have the ability to provide a complete medical history to my current or future physician(s), without the potential to leave out essential information.

As I have stated in previous posts, written documentation is a key factor when dealing with the medical community. My journals make up a large portion of my written documentation. My journals are just as important as my written communications with my physicians. The same theory holds true for both. Verbal information can be challenged, but written information through appropriate documentation / communication is unlikely to be questioned. Keeping a health journal adds yet another level of security and helps increase the odds, for the patient who is searching for a diagnosis.

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