Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

Meeting Minutes March 1st and 15th, 2014

March 1st, 2014

Topic: Open Forum

  • One member shared that an important township meeting was coming up for Green Brook to discuss the fact that the Township was planning to convert it’s Volunteer EMS system over to a paid system which would raise taxes as well as leave people who use the service with a large bill.
  • Our meetings were discussed. I shared with the group the following budget

                       Website                                       $36.00

                       business Cards ($15.99/250)        10.00

                       Photocopies (10 cents/pg)             15.00 (avg. $10-$20/month)

                       Postage (mailings @ $1.13 ea.      10.00 (done when $ available

                       Nametags/notebook/folders            3.00

                        Pens/markers/dry-erase                 3.00

                        Brochures ($1 each)                     10.00

                        Flyers ($1 each)                            10.00

                        Gas                                                10.00

                         Food/gifts                                     15.00 (gifts/Journals/snacks

                                                                          $122.00 per month

                                                                           - 22.00 per mo. donations (avg) 

                                                                     $100.00 deficit per month


  • The Donations Can brings in between $7 - $13 per meeting with an average monthly donation of approximately $20-$25 per month.
  • Group members brainstormed possible ways in which to generate revenue
  • One member shared that she is involved with another group and that they have great success with a fundraising event at a Comedy Club which is run once per year.
    • We need two volunteers to work together to make this happen! If you are an organized person who is a self-starter and would like to take this on, please let me know!
  • One member describes the pain of Fibromyalgia
  • Members discuss how IBS symptoms can change your life. Comments were made about how an attack really drains you of energy.
  • Long Term Care Insurance denial due to having a diagnosis was discussed by one member
  • One member shares she has a diagnosis of Epi-scleritis of the eye, which she says very few doctors can treat. You can become blind from it! She has to be seen every 3 months and it’s a long drive.
  • Members discuss how each problem requires another doctor, one doctor for thyroid issue, another doctor for eye problem, in addition to doctor managing illness, this is time consuming and energy draining to have all of the apts.!
  • One member having difficulty getting children to help out
  • Members discuss the newest approach to treating is an “integrative” approach which combines conventional medicine with holistic approach.
  • One member shares that they are not doing better on a new medication regime (for one year already!) but they are not doing worse either. Shared some other symptoms that are new
  • Medical Marijuana program was discussed
  • Ticket-to-work program mentioned, a state program that allows disabled people to work a few hours per month

March 15th, 2014

Topic: Being A Caregiver When You Are a Patient

Ice Breaker: If You Could Go Anywhere in the world (money and health were not a concern) where would you go? Some answers were: New Zealand, Greece, Key West, El Paso Texas, Turkey, Hawaii


  • One member discussed having to move mom from an Assisted Living to a Nursing Home.
  • Group discussed how substandard the level of care loved ones received in Nursing Home and hospitals is now. One member said that the exception was Hospice. Hospice was said to be very attentive and caring
  • Group discussed how when you are caring for a loved one, but not well yourself, that you have less “patience for the patient” and then can feel guilty
  • One resource recommended to help you take care of a loved one was

Open Forum:

  • Dr. Phil Show recently did a small segment on Fibromyalgia. (It aired perhaps on 3/13 or 3/14). The episode was listed as being an uncontrollable boy who was head-butting, biting and punching teachers but the last 10-15 minutes was about a wife who was struggling with her husband not being supportive of her illness and that he didn’t believe it because he didn’t understand it. A professional was on the show who explained it to him and gave some new information, newest info may point to Fibromyalgia being caused by a virus.
  • Physical Therapists don’t necessarily “get” chronic illness. They unknowingly can cause an autoimmune disease (or Chronic Fatigue Syndrome or Fibromyalgia) go into a Flare-up by working you too hard during your sessions, even when you carefully interview them and you think you are on the same page they can forget! Or they just think you are OK to go full force, then you are suffering the next day or two
  • One member recommends Aloe Vera juice an states she gets benefit from drinking this supplement daily
  • One member is pending back surgery as well as rotator cuff. This member is also dealing with ear pain and some of her labs are off