Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

Meeting Minutes May 2nd & 16th, 2015

Meeting Minutes  for May 2 and May 16, 2015
May 16, 2015
In Attendance:  8
Donations collected toward website costs and mothly expenses:  $11
Ice Breaker:  "Two truths and a Lie" each member told three statements about themselves, two statements were lies!  Then the group guessed which statement was the true statement
Topic:  Open Forum
One member has to slowly wean off of all medications and supplements in order to "try again" to see what is helping (and not helping)  But there seems to never be a good time to undergo this process.  Always something to deal with and afraid that any changes will make her worse before getting better.  Dental appointments and very ill pet
One member with Fibromyalgia and Chronic Fatigue Syndrome (CFIDS) states that the Fibro is much easier to treat than the Chronic Fatigue
Complaints that Chronic Fatigue Syndrome doctors do not take insurance!  They charge exporbinent fees and then you have to do your own insurance claims and hope to get anything back at all.
The group acknowledges that doctors that specialize in Chronic Fatigue Syndrome are few and far between.  They are "integrative medicine" doctors and it is not uncommon to be charged $800 for a first visit.
One member notes that you have to "spend a lot of energy in order to get energy".  Members present agree!
One member states a hallmark sign of Chronic Fatigue Syndrome vs. "regular fatigue" is "Post-Exertional Malaise" meaning that after any expendature of energey (be it physical or emotional) your body is unable to bounce back, sometimes for days!!!
Group discusses that since most doctors are recommending activity for most of our illnesses, how do people who have Post-Exertional Malaise manage to incorporate any activity into their day?  One member with CFIDS answers, "my doctor recommended for me to start a walking program but starting with only two minutes a day for the first TWO WEEKS!  And then, if that is tolerated, to add ONE minute each day and see if you can tolerate that."  ** please discuss beginning any activity program with your doctor before beginning!
One member discusses having "dermatamyocitis" which is extremely rare.  She shares that only approx. 5,000 people in the U.S. have it, which means that even though it is a very worthwhile cause, it would not be a disease that researchers would focus on because the numbers aren't there to support the R&D required.  Members present agree that this is unfair!
One member shares that grandchildren help keep her positive!
One member shares doing better with pain lately, feels it is possibly related to better weather.
One member thinking of seeing another doctor for a "second opinion". 
One member who is finishing up school will be taking a licensing exam in July!  We're Rooting For You!!!!
One member gave two weeks notice to his employer through the "ticket to work" program where he did 3 hours/week.
One member's son says he is declining and he is admitting to self that he is getting a bit worse.  Love and Support going out to you from all of your group family!!!
One member will try Botox for spasm in arm.  Another member shares that she has had 2 botox injections for spasms of muscles around one eye with great effect and due for 3rd shot soon (able to get every 91 days)
Next Meeting:  June 6th 2015
TOPIC:  Second half of Nancy's Presentation of Chakras!!!
May 2, 2015
Attendance:  10 members
Donations Collected:  $22
Thank you all for your contribution.  It helps defray the cost of the website and operational expenses
Ice Breaker:  Share the worst date you ever went on
TOPIC:  Presentation on Chakras by our member Nancy
One member went to the Disabilities Expo yesterday (it was on Sat. and Sunday) the link to check it out is
Nancy shared so much information on Chakras!  Here are a few of the highlights.  There is a wealth of information available on the internet, just search for chakras!
It has been around since 1500 B.C.
Chakras correspond to areas of the body.
Chakras deal with energy, you can absorb energy from external sources and can exude energy too!
How can chakras imapct healing?  Can strengthen immune systerm, increase metabolism, increase oxygeon retention, decrease mental fatigue, feel more rested, increase memory and concentration and clarity, and make clear one's true purpose
The 7 Chakras
1 Root - base of spine
2 sacal - under belly button
3 naval
4 heart
5 throat
6 seat of the soul (also known as third eye)
7 crown
There are Chakra Personality Types
The can be blockages to chakras
1.  Blockage to root chakra - lack of trust, anxious, fearful, can become dependent on another, indecisiveness, easily up-ended by stress, life goes crisis-to-crisis
2.  blockage = lack of self esteem, lack of care for self
3. affects relationships, disturbs proper balance, give & take
5. difficulties with interchanges with other people
6. mind and soul blocked - decrease in cleear thought
7. feel trapped in material world, a sense of emptiness that you cannot explain
blockages can be overcome by
1) affirmations
2) chakra energy massage
3) meditation
4) yoga
More information on the different chakras:
Root Chakra - loss of trust, don't feel at home in your body, easily overwhelmed, chronically tired, cold hands/feet, colon problems, back pain
Root Sacral - don't enjoy life, lack of self, creativity is blocked, preoccupied with guilt, jealous, problems with bladder or prostate and physical drive
naval root (solar plexus) cant express freely, kgive in to others, insomnia, heart burn, over weight, jealous tendencies
Heart - difficulty letting people in, isolated, problems sustaining friendships, social situations leave you tired & worn out, asthma, susceptible to colds and heart & lung problems
throat - cant express self, shy, inhibited, prob. with self esteem and self love; says things you regret, talk people into the ground!  "overtalking", sore throat neck and shoulder
third-eye - feel meaningless, deal with anxiety & depression
crown - when not in balance, repeat bad patterns over and over
A book that is very helpful on this topic by Carolyn Myss corrolates the 7 Chakras with the 7 Christian Sacraments
Next Upcoming Meeting:  May 16th, Hope to see you there
other things that can help open up your chakras:
Chakra yoga, wearing certain colors or scents and crystals
Thanks Nancy!  The second half of her presentation will be next month!
We moved on to Open Forum:
One member came back after a long break:  Welcome back Donna!
Lots has happened for this member including a change in diagnosis and many life changes.  She shared with us another support group she went to one meeting but enjoyed and hopes to go again called "Contagious Optimisn" held at the JFK Library from 7-8:30 it is run by Colleen Georges a Professor at Rutgers and is Free of charge.
Another member struggles with a rash that no one can figure out what it is!  Very itchy, bioopsy inconclusive.  We feel for you!!!
One member had to wait for her doctor for three hours as he had an emergency!  To reschedule would have meant waiting another 4 weeks to be seen!  It seems even the medical community can be ignorant as to how difficult this is for our illnesses!
Next Upcoming Meeting:  May 16th, Hope to see you there