Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

Meeting Minutes - July 2013

I.  One member discuss difficulty in finding a therapist.

  1. Therapists seem to be misinterpreting the unpredictability of the disease for a lack of commitmentt to attending therapy.
  2. Those of us living with an autoimmune disease, CFIDS or Fibromyalgia can find it extremely difficult to commit to anything in advance, whether it be a party or a doctor's appointment.
  3.  All therapists have a policy that if you are unable to make your appointment for any reason, that you must give them a minimum of 24 hours notice to cancel.  Our health changes from hour to hour, and likely we do not know 24 hours in advance if we will be feeling well enough to drive a car or leave home.
  4. All members present have either had therapy, are in therapy or are seeking therapy.
  5. All members felt that productive therapy sessions where the focus was on learning coping skills to reduce levels of stress (which directly affects our illness) is an extremely important component to getting to a better level of wellness! 
  6. Members have been trying to find a therapist who is willing to be flexible and help to find a solution to this problem.  Here are a few of the ideas that we came up with:
    1. We acknowledge the benefit of face-to-face therapy sessions, including the exchange of body language and facial expressions, but it would be helpful if the therapist would allow for a phone session if the client is not feeling well enough to leave the house.
    2. Perhaps the therapist might be willing to reschedule that week's appointment during that same week, considering the appointment to be kept and not charging a "missed appointment" fee (providing the client calls the therapist within a agreed upon number of hours prior to the appointment time).
    3. Perhaps SKYPE might be an option???  This would offer the ability to see each other without the travel.
    4. Home visits???
    5. We need these providers to help us think outside the box! 
  7. Members present feel frustrated over this topic as they state that they very much want the help, and acknowledge that the therapy would be very useful in helping them to feel better overall. 
  8. Members discussed the topic as it might appear from the therapists point of view and are perplexed as to how to get this much needed help as there are roadblocks along the way, including some insurance carriers not wanting to pay for telephone sessions, and some therapists not offering telephone sessions as an option.

II.  One member discussed acknowledging that there will come a time when they can no longer drive safely.

The following community services were mentioned as being helpful:

  1. Shop Rite grocery on-line ordering / Home delivery works well for one member
  2. PeaPod Grocery Delivery through Stop & Shop on-line order / Home delivery works well for several members.  These services both even bring the grocery bags into your home! 
  3. Most pharmacies have free home delivery
  4. Staples has delivery on on-line orders over $50
  5. A Brand New Program in Somerset County for Seniors & Disabled is a transportation service!!!  Visit website www.Ridewise.Org There is a $40 annual fee and $3/mile charge.  Now you can have an option to get you to and from doctors appointments, hair dresser, store, bank, etc.!  Copies were provided to the group!  Thanks Anne!  Great Info!

III.  One member is back to work full time.  We asked her what she is doing to make sure she is able to work and not loose ground with her illness.  She listed the following:

  1. Nancy states she feels worse if she doesn't exercise.  She does some form of exercise 4x/week.  She varies it each time, one day yoga, one day water aerobics, one day light weights, etc.
  2. She wholeheartedly believes in the power of positive affirmations and repeats them to herself everyday!
  3. She begins each day with a 30 minute meditation with uplifting, peaceful music playing quietly
  4. She gets a massage monthly by a person trained specifically in treating Fibromyalgia
  5. She goes to the chiropractor regularly
  6. She tries to keep to a schedule of getting to sleep and waking at the same time each day
  7. She attends church regularly and states that being prayed over has given her positive benefits
  8. Also, she did give up her commitment to the dance company she had been dancing with to balance out the other demands of her life.  (She is also a caregiver for her mother)

Way to go Nancy!  You give us hope that one day soon it could be one of us getting a remission and getting some parts of our life back!  And with your wonderful tips we are sure to have a chance to succeed as you have!

IV.  One member attends a Chair Yoga class weekly at the Princeton Fitness/Wellness Center

V.  One member is six months on a new medication for MS.  He reports that while he can't say there is improvement, he feels that there has not been further deterioration of his condition which we will call a win!

VI. I shared that during my 3rd month on Xeljanz that I am finding better stamina in addition to the resolution of the pesky rash that I suffered with for almost two years! My Dr. told me I could continue to see improvements until around the sixth month!  I can't wait to see how these small victories add up to a better quality of life!  I am hopeful!

VII.  Another member shared that Katie Couric aired a segment on 7/19/13 which discussed the use of medical marijuana.There was also a 20/20 episode that showed tourettes syndrome being cured by the use of MM.

VIII.  Meetings scheduled for August, Saturday August 3rd and Saturday August 17th from 2pm - 3:30pm, RSVP via text or email