Previously I mentioned keeping a journal of your illness experience, a medical journal. In the past I’ve also advocated the benefit of keeping a gratitude journal. Journalling, however you decide to do it whether through words, drawings, collage, completely free form or a mixture has no known harmful effects and only known beneficial effects.
Our brain, perhaps our whole being, is programmed to remember bad things more than good things it seems. This may be due to the importance of knowing where that saber-tooth tiger was yesterday who killed your cave-mate. It’s important to remember where those poisonous berries were that your friend ate and died from. Knowing where danger exists is key to survival and things that are dangerous then by default are safe.
Gratitude journals have been shown to significantly help reduce sadness, hopelessness, depression, as well as other common life effects such as stress. So what are you thankful for today, what were you thankful for last week? What happened at the beginning of the month that you remember was a pleasant experience? What happened two weeks ago? Most people, I’m willing to bet can’t remember two weeks ago, and barely one week ago. That will certainly be the case about subtle changes in your medical well being.
As we all know patient time with doctors has been greatly reduced, and is now roughly about 7 minutes long. That’s the ideal the doctor is measured by in many cases. That’s not a whole lot of time. It would be better if it were longer and it isn’t likely to change anytime soon. Our choice as patients then is how shall we use this limited time.
First it is important to know that prior to you seeing the doctor in either your hospital room or his office he has read your chart, your medical history or at least a summary of it. He knows from the record what you complained about last time, they always put that in there. It’s usually worded something like patient presents as follows, or patient complained about this. It won’t be a word for word it will be a summary, what they felt was important from your last visit. You may wonder how they do that if they are so busy.
During the visit they may or may not scribble some notes, but after their visit they go to their computer or the doctor charting area and dictate verbally into the computer or a transcription service the interaction. They can speak faster than they can type and it makes it very efficient. The voice memo is then transcribed by a service and put into your record. Occasionally the chart notes are indeed text entered by the doctor, though usually this is done primarily in fast paced situations such as emergency room visits. This is not a fixed rule and it can and does vary greatly.
The point is there is record the doctor has looked at, you don’t need to bring it all up again. You may spend your time going over the same things, that is your choice, it isn’t necessarily the most efficient use of your time with the person you expect to diagnose and treat your illness. Certainly if there is something new do bring it up, that’s what you are there for.
In the last hospital I worked in every patient was given a wire bound journal and a pen. The purpose was to record events in the hospital, your experiences, whether you liked the food, the nurses the environmental services people. Anything and everything. Most importantly it was so you and your family or friends could share their concerns about your health with the attending physicians and nurses.
Now if you think the short window of time available to you in a doctor office is bad then consider in the hospital you will probably often have even less time. Also whereas in a doctor office visit you know when it will happen, in the hospital you may not know when it will happen and it may happen when your family or care-provider is not present. So keeping the journal is good idea because when that doctor or resident visits you can get right to your questions, you can then write them down to remember them by and keep track of what has been said, what you can expect for your treatment and so forth. It can serve as a valuable memory aid.
Also when the family shows up and your tired or may simply excited to see the grand kids you don’t need to worry about whether you are forgetting something the doctor told you. Also when you are bombarded with questions by family you can simply answer them with ease from your journal and don’t need to struggle with trying to remember everything. It can also serve as a check on whether or not your received the things you were expecting such as diagnostic tests, or medications. You may have thought that today you were going to have a brain scan and you notice nothing seems to be going in that direction. You can then mention it to your nurse who may not have been told that, it does happen. Or perhaps you misunderstood, or even perhaps the doctor reevaluated things and changed his mind and the word did not filter back to you. These things do happen and that journal by your bedside can help keep it all sorted out.
Here I’ve been talking a lot about doctor patient interactions yet this is equally true and applicable to care-providers in the home, such as family and friends or even hospice providers. Knowing what worked two days ago or what didn’t work two days ago is more valuable information than “I don’t feel good” or “I haven’t felt good in weeks.”
Writing down, even short notes such as I went to take out the garbage and felt weak, and had a hard time breathing, it was 8 PM and when I came in I had to do a nebulizer breathing treatment which after doing I could breath much easier. The next day I felt fine though was a bit tired and slept a lot. My sleep was interrupted by difficulty breathing and I needed to us my rescue inhaler. This is all valuable and actionable information. Know that 6 out the past 10 days you needed to increase your nebulizer use beyond once a day is significant information and can provide the basis for further modifications in your treatment.
You are the owner of your visit with your medical provider, the question or variable is how shall you use this limited and valuable opportunity? Will you come prepared with facts and information about what you experienced, what you tried, what worked and what didn’t? And speaking what worked this is important as well. You may forget that over the past 5 months there were 20 days when you randomly did such and such a thing and has a pleasant day, better than most. It may be so random that you don’t pay it any attention.
You think you would remember, but trust me most people, myself included do not. We remember what hurts, what sucks, what was disappointing, what was limiting. We don’t always remember that when we got up and did such and such right away, and then did such and such the over all effect was a very good day. We especially don’t remember it when we don’t repeat it over and over. Yet keeping a journal allows us the chance to look back and discover that every time we did something a certain way we had a good result. This is huge information. This is golden. This is medicine in the modern age.
In more distant times we had a more direct connection to the village medical provider, whether herbalist, healer, shaman, or what have you. They knew us, we knew them. They knew our family, they knew us when we ran around with no clothes, they knew us when we came back from our first hunt or harvest or wove our first cloth. They knew us for our pranks, our foibles, our weakness, our proclivities. They knew us. They also knew when a treatment was working and when it wasn’t and often the knew on a daily basis and could observe the changes. That isn’t how medicine is today for better or for worse. This is why we as patients need to do our part to fill-in the gaps.
If you come to the doctor visit unprepared then you are Mr. Asthma-Smith a medical condition first and an individual person second. If you come prepared then you are Ms. Rosenthal who has these asthma related symptoms and who responds more favorably to these medications and treatment plans and now what’s working and how can we keep it working. You have a vital role to play in your illness and it is best played when you truly contemplate and engage in your health treatment.
These may not present as Buddhist principles and certainly don’t use a lot of Buddhist jargon yet fundamentally they lie at the heart of our Buddhist practice of knowing ourselves, who we are, what we are, where we are. Contemplating disease is about many aspects of Buddhist practice, knowing self is a start. Next up is Cessation. But first take these previous words to heart, become an active participant in your medical care, contemplate your illness.
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