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Medical Journaling – Part 1

Posted by Phoebe Ezell on Sep 15, 2016 2:19:28 PM

Recently a good friend of Men’s Liberty was in the hospital with a life-threatening infection.  As with most hospital visits, it was extremely stressful on his caregiver…  Me.

While he underwent emergency surgery and recovery, I realized – it was left up to me to be his health advocate.  I found myself talking with all the doctors and nurses assigned to him, trying to take notes on what was happening every day; the daily doctor’s instructions, if they changed; what all the machinery was that was connected to him, and what was being poured into his body.

The one additional element I didn’t record was how he was feeling.  And that was only because he couldn’t verbally communicate with a vent tube down his throat!  It was the quietest he has ever been in his lifetime!

For the most part I have all my notes on one notepad, but I also have them jotted on paper napkins, the back of grocery receipts and whatever other loose pieces of paper I would dig from my bag to take notes.

Keeping these notes allowed me to clearly share the majority of each day’s events with all of our family and friends.  Those notes also now act as a mnemonic device for me as I share with him the sequence of events that he was clueless to, as he was in an induced coma.

I became his memory of that time period.  I had often witnessed my father saying that about my mother as they negotiated the V.A. medical system.  She is his memory.  Now I had a lot better understanding.

With today’s healthcare systems so very complicated, I now wonder how people navigate them alone.  And as it keeps getting more and more specialized and intricate, the need for a “memory keeper” is key.

These are my steps for being proactive with your own medical care and keeping a medical journal:

First, start with a notebook or notepad.  Nothing fancy, but simple to utilize, by keeping your notes in one place.  Making it a really bright color makes easier for you or your caregiver to find it in an emergency.  Your medical records and notes should be the only thing you put in this notebook.

There is no right or wrong way in organizing your notebook.  It is all about creating a system that works for you.  You should be able to access the information that is important to you.

Remember that I said I took notes on receipts, napkins, etc.  Instead of transcribing them, I simply taped them into my journal.  In other words – NO RULES.

In addition, if you are incapacitated, the journal allows others to have access to what you are currently experiencing and monitoring with your health.

So that brings us to “What to put in your notebook.”

  • Record your pharmacist. They have an electronic record of all the prescriptions you fill with them. If you have more than one, make a note of their phone numbers and addresses too.
  • Record any information related to all of your doctors. Include their phone numbers and addresses. Make it easy for someone else to know who you are dealing with.

  • Record some of your basic health information as well. Start with simple statistics like your DOB (Date of Birth), weight and height, blood type and your typical blood pressure, if you know it.
  • Record any medications you take on a regular basis. Remember to record if you have any reactions to your medication. When recorded, it’s also easier to remember to discuss it with your doctor on your next visit.
  • Record prior illnesses, surgeries and injuries. These events may play an important role in your long-term health. It’s very easy to forget major medical events when you are directly asked by a doctor. Talk about a brain freeze, or even a “Senior Moment.” OMG - I forgot that I had a car crash that I had with a semi-truck in my youth. That accident may have affected my neck and spinal pain later as an adult. And who forgets getting run over by a semi-truck?!

I use to have migraines and then started a “headache journal.”  I used a simple date book.  I could record the date it happened, the type and level of pain (from 0 to 10), where it was in my head, how long it lasted, and anything else that was happening in my body (nausea, etc.).

I also looked at my life and what was happening in it.  Things like what I was eating and how I was feeling that day.  Eventually, I saw a pattern and could address the source, not just the pain.

Hopefully, this gives you some ideas to begin your own personal medical journal.  And perhaps it will spur some discussions with your spouse, family members and friends.  They need to know you’re being proactive with your health – and by telling them, they’ll know where to look to find your journal in the event of an unfortunate tragedy.

Begin taking the steps to create your medical journal now!!  In a while, I’ll share some more tips related to this subject!

We also want to acknowledge that this month is National Spinal Cord Awareness Month. Men's Liberty has some wonderful blogs on Spinal Cord Injuries, including blog postings from Caleb, so look around and read these wonderful posts!

Topics: spinal cord injury, Health Literacy, Guest Blogs

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