Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

October 13th, 2018

Attendance:  Joanne, Jennie, Jill, Nanette, Terry, Scott

Donations Collected at meeting:       $95

Average Monthly Expenditures       $100

            Deficit                                     -$5 

in September, our website drew 420 Unique Visitors!!!! That is 420 people we helped and supported in some small way just in the month of September!                                    


One member received 1st denial of Social Security and will move forward to next step.

One member shares her VP is making it hard for her and sees her as a “liability” to the company.  She recently started FMLA Here is a link to DOJ on the topic:

            One member concurs stating that “if you were missing a leg or had to use crutches, they would understand more, but autoimmune” there is nothing to see which makes it hard for bosses to wrap their heads around

One member shared a quick summary of the Spoon Theory.  Here is a link to bring you to the Essay which can be so affirming.  I know I've included it in the past,   If you haven’t read it in a while I suggest another look! Print it out and share it with your friends and family!

One member suggest the book “Walking On Eggshells” and a website called “out Of The Fog” which deals with Narcisitic Personality Disorder.  She gives a quick summary stating that the gist of the book is that 1) you did not cause this, 2) You cannot “cure” it, and 3) Can’t control it.  It suggests keeping things light and fluffy to avoid tension and drama.

One member shares a book title worthy of a look, “Lipitor Thief of Memory”. In it, she states, are facts showing that Lipitor is linked to Global Transient Amnesia.

One member shares a book, also notable, “The Cholesterol Myth”. Wherein they debunk the myth that cholesterol is bad.  In fact, she states, the body produces cholesterol because the brain needs it to function. Have a look so you can see what you think!

One member states they recently read that of all the articifical sweeteners out there, Equal is the worst for your body.  Here is a link, I'm sure you will agree this is important and possibly life changing information for every person, not just people with Autoimmune Disease/Chronic Fatigue Syndrome/Fibro

One member has increased their dosage of Xanax to 3x/day which helps with symptoms, but now feels more fatigued.

One member feels that Aleve is a “miracle” for him.

One member decided to taper off of oxycodone.  Here is a link from the Mayo Clinic if you want more information about that:

One member has just started taking Neurontin for neuro pain (burning). Waiting to see if it will help.

Discussion about Bextra and Celebrex going on and off the market a while back.

One member shares good results from Jersey Community Accupuncture in Flemington on Stangle Road. These wonderful folks have come up with a way to charge between $20-$40 per session. No longer out of reach as an option that many insurance companies have yet to include in benefits.

One member shares info on molds found in the home. There is a scoring system. Her home was rated at the level of “get out now”! States that Clorox is not the preferred method for cleaning mold because mold releases toxins which can be worse. Also, the temperature and moisture give mold something to feed on and this summer was exceptionally hot and wet.  Here is a link for more info:

One of our members daughters is having twin boys! (Fraternal) Nice!!!

Discussion centered on friends/family either acting jealous that we are unable to work, or they think we are “faking” or “lying” about it. Sometimes it takes years to get answers with Autoimmune Disease or Fibromyalgia or Chronic Fatigue Syndrome (CFS/ME)

One member shares that friend recently questioned her “You are STILL in pain? WHY?” (conversation ensued)

One member discusses wanting to fill out disability paperwork, but without a diagnosis he is thinking “What do you put?”