Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

Happy Holidays!  Love, "Marlie"

Meeting Minutes December 7, 2013

Topic:  Here we are at the holidays again!  This means seeing relatives that we may not normally spend time with.  These relationships play a role in how we feel physically.  Some people make you feel good, others cause anxiety.  Let's bring coping skills to the table for how we deal.

  • Remind yourself that you cannot change anyone except yourself.
  • It helps if you just accept people for who they are and not expect them to change
  • Some people require you to set limits:  limits of how long you will stay at a gathering, limits of how often you will speak, whatever limits that work for you in keeping your illness in check.  It may require that you agree to not discuss certain "trigger" topics

Think of a situation that is likely to happen (or use a scenario that has happened in the past) and "dress rehearse" ahead of time. 

Here are two scenarios that we role-played in the meeting:

1.  You are told what time to arrive but the person hosting the party is notorious for telling people to arrive at 2pm but dinner is never ready until after 6pm making it a really long day for you and also having you go without eating for several hours longer than you had anticipated:

the group brainstormed strategies as follows:

  • Purposefully arrive late
  • Call before 2pm and to see what the expected time to serve dinner will be and explain that you may be late but will be on time for the meal.
  • Upon arriving mention to the host/hostess that you aren't having a "good" day and that you may need to leave early.  (bonus, this gets you out of the very physical chore of helping to clean up which is very taxing on many of us yet we do it any way out of obligation)
  • Bring an appetizer that you can eat (many of us have food restrictions such as dairy or gluten) and snack on it so that you don't get too hungry waiting hours and hours for the meal

Scenario #2

You are seated at the dinner table next to "Great Aunt Betty" who's first question to you every year is "Are you all better now dear?  Are you back to work yet?"

the group brainstormed strategies as follows:

  • Respond "Same as last year Aunt Betty, No change." and then go to your previously prepared list of questions that you can ask her.  Just change the subject.  She won't even notice!

The topic then flowed into Open Forum.  The following topics were discussed

  • One member discussed how many friends/family just can't understand the variation in her health from day to day. 
  • One member shared that discussing emotions takes a toll on her
  • One member agrees and states that her brain just "turns off" at a certain point.
  • One member states that a friend repeated states "You must be better by now!"  this is very upsetting to the member.  The friend is very nice, but just doesn't "get it".
  • One member states that Chronic Fatigue Immune Dysfunction Syndrome (CFIDS/CFS) the doctor's don't even know if everyone with this even has the same thing!  Some people may be experiencing depression.
  • Members discuss that Fibromyalgia appears to be more widely recognized and accepted as a "real" illness. 
  • One member's sister didn't want to tell people that she had CFIDS.  Since the member is diagnosed with CFIDS and Fibromyalgia, her sister only disclosed that she had Fibromyalgia.
  • Members discuss that CFIDS/CFS is known in other countries as Myalgic Encephalomyelitis (ME) which seems to be a more accurate name for this very debilitating disease.  There is not one universally recognized term which can be confusing
  • Two members need to schedule MRI of the brain which can be very daunting if you have claustrophobia.
  • One member completed a course of "rolfing" and is considering a maintenance plan
    • Members discuss that treatments are very draining such as rolfing or chiropractic sessions.  Some treatments are 3x/week and can feel like a full time job.  There is always "down time" post treatment sometimes up to two days are lost to recovery!
  • One member shares that the Woodbridge MMP Center (medical marijuana program) opened to "rave reviews" November 18th.
    • Participants are given an appointment
    • First appointment includes a counseling session so they can help you choose which product best suits what your needs (ie., pain relief, weight gain)
    • cost is $125 for 1/4 ounce plus 7% tax
    • it is not covered by insurance plans
    • very limiting to who can participate due to 1) very narrow diagnosis that are eligible and 2) some people this treatment option will just be out of their price range

Your fearless leader will be featured in the next issue of the Somerset County Women's Journal!  There will be all of the information for people to find us here at group.  We are hoping to be found by anyone who is chronically ill with autoimmune disease, Fibromyalgia or CFIDS/CFS.  These magazines are free to the public and will be available in doctor's offices, hair dressers, businesses.  I will actually be in the next 3 issues which is an amazing donation from the SCWJ publisher who appreciates what we are doing!  The first article is entitled "Grief in Chronic Illness".  Please keep your eyes out in January and pass it on to your friends and family. 

Next Upcoming Meeting:  This Saturday, January 4th, 2014  2pm. Hope to see some new faces!  And hope some of our old friends will join us in the new year!