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Saturday, January 22, 2011

Process of Diagnosis & What Follows

Patients For A Moment (PFAM) is a patient-centered blog carnival to build connections within the community of people who blog about illness, disease, and disability. Shweta, of It's No More In Your Head, is hosting the January 26th edition of the PFAM blog carnival. This month's topic is about the process of diagnosis and what follows:  what advice you would give to those who have recently been diagnosed with an illness or are going through the process of diagnosis.

My tips to those that are going through the diagnosis process, or who have recently been diagnosed, include:
  1. Be your own voice and advocate, as much as you're able. Sometimes this is easeier said than done. The diagnosis process can seem very surreal. But, you know your body the best, so you need to do your best to communicate what you're experiencing clearly to your doctors, etc...
  2. Ask questions! Don't settle for something at face value. If you don't understand something or want to know more about something, ASK!
  3. Be an informed patient, but try not to get too overwhelmed with all of the available information. Also, don't jump to conclusions and "self-diagnose."
  4. Become involved in support group(s), the online patient community (e.g., blogs, chats), friends, and family.
  5. Keep a journal / diary. This will help in many different ways. You can use ones that are available online (such as this Migraine Journal), or make one that caters to your individual situation.
    • For example, I designed mine in Excel with the following columns:
      • Date
      • Morning - time I wake up / get up, and then just basic tasks I did (what I did)
      • Meds - times and what meds I take (the meds I take on a daily basis aren't written each day... I put a star when I start them, and them take them around the same time each day after that) - this makes it very easy to see when I've taken my abortive meds
      • Headache (type, time, etc) - anything specific about this headache
      • Intensity (0-5) - intensity level (my doctor uses a 0-5 scale, but I like to use a little different one... example:  3+ means that my day was split between a 3 and 4)
      • Neck pain
      • Back pain
      • Shoulder pain
      • Allergies
      • Mood (depression, anxiety, stress)
      • Cognitive ability (focus, thinking, memory, etc)
      • Exercises
      • Evening - basic things I did throughout the day, and then the time I go to bed
    • I do this for each month (easy to print out and keep in a binder). At the end of each month, I also include the following:
      • Changes in medication
      • Reactions to medication
      • Menstrual cycle
      • Weight
      • Doctors' appointments
      • Major stressors
      • Major accomplishments
    • This allows me to have a "quick snapshot" of the month that I can easily refer to and see what meds I was taking, what doctors I was seeing, etc...
    • I also have a sheet that my doctor gives me that has 3 months on the page - I just write the pain level and abortive meds I take on each day of the month.
      • I also compute an average pain level for each month, as well as a count of migraine-level days (4-5 on my doctor's 5-point scale).
  6. You're going to experience a lot of different emotions throughout the duration of the illness. However, the dianosis process can be quite turbulant. Allow yourself to go through the stages of grief:  denial, anger, bargaining, depression, acceptance. These stages will most likely not occur in order... you'll probably revisit them many times over time... it truly will be a PROCESS.
  7. Everything can seem so confusing and overwhelming, but there's always HOPE!
    • REACH UP,
    • REACH OUT,
    • DON'T GIVE UP!

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