Monday, December 19, 2011

Your own best advocate

Jennifer Mason

Recently I was hospitalized for what turned out to be an MS exacerbation compounded by pneumonia. It all started when I took a sip of coffee and choked on it, dropping the cup. I knew something was wrong and was thankful I had done a lot of research in the past.

My high fever and inability to find the words I was looking to speak sent me to the Emergency Room after another call to my doctor. I was very sick.

I have been keeping a log for many years, which has helped me to realize when things in my life are not ok. It helps me when I go to the doctor’s for an appointment and allows me to keep track of how my meds are affecting me as well.

Here is what I keep track of daily:

  • How am I feeling when I wake up? Am I still tired or refreshed? 
  • How are my motor skills? Do my arms and legs move evenly? 
  • Am I in pain? Where and what level is my pain on a 1-10 scale? 
    • Is this new pain or continuous? Can I stretch it away or do I need to take medication? 
    • What kind of exercise did I do today? Yoga, walk, weights, or was I unable to exercise?

  • Am I happy or sad today? What are my thoughts about? 
  • Did I interact with family and friends or did I find ways to avoid them? 
  • Did I have any new symptoms today?

  • Did I remember to take my medication today and was it on time?
  • Did I have any unusual side effects?

What did I do to make myself and others around me smile today?

Four things I am grateful for today.

During this last hospital stay, the log helped me explain all the changes that had happened to me in the past few days, including when they started. I always take my log with me and update it with new medications that are prescribed. I also have an area where I can write down the questions that I have for my doctors.

We are our own best advocates when we are in an emergency and it is so important to have all your information at hand. How many times are we asked the same questions at the Emergency Room or doctor’s office? 

It is important to go to your visits with as much information as you can provide your physician (For more tips, click here.) You may even find it helpful to keep a card in your wallet with all your medications and emergency contact information on it. Are you prepared?


  1. Great advice! I have also found it helpful to be sure that your caregiver (spouse, parent, etc) also has an up to date list of everything. Also, always remember that some symptoms may seem very slight and unimportant but EVERY symptom means something to your total MS care so don't overlook anything you may feel.

  2. I'm glad you added the positives in your day to the list. The first few questions would only add to my depression by considering the answers. I'm living happily in DeNial right now... but do carry a medication list.

  3. i think this blog is great. very informative that i think a lot of people dont think about. keeping a log is a great idea that way you can also look back and see the progression and recession throughout the weeks, months exc.

  4. Thank you for sharing! This is very helpful to me because I do have a problem with memory. When I leave my doctor, that's when I can remember the specific concerns I wanted to discuss. I am starting my own journal today! :)