Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

Our Mascots! Marlie (left) and Wilson

Meeting Minutes February 11, 2017

Attendance:  6

Donations Collected:  $11

Welcome 2 new members!  Welcome Patrick and Welcome Preeti!

Ice Breaker:  We did not do an ice breaker question as we played the Valentine's Day Card game at the end of the session

Topics Discussed:

1 member was denied for disability for the 3rd time.  Is now using an attorney and will be having to go to a "hearing" to present information.  She shares that it might take up to another year to get this case won.  She states that having so many doctors may have made it more difficult to get a ruling in her favor up to this point.

1 member has been suffering with symptoms x 15 years and is still as of yet, undiagnosed.  Group members offer support and share similar experience of journey to diagnosis

1 member has several diagnosis:  Chron's, Barrett's Esophagus, CFS, Autoimmune Liver Disease

1 member has Graves Disease and shares that there are about 300 different symptoms; also has RA

1 member has gotten great information from a book by Dr. Murphree about Fibromyalgia

1 member has 12 different doctors from Rheumatology to Neuro to GI.  She really likes Dr. Lorraine Maita who is a Functional Medicine Doctor

   - she shares that sometimes the doctors can contradict each other as to a treatment plan

1 member shares that in order to determine if you are suffering from food allergies, it can be helpful to undertake an "elimination diet" where you eliminate dairy, gluten, processed foods, sugar, nightshades...  once you are at a bare-bones diet, you can then weekly add back in and see if that is the item that is causing you symptoms.

1 member has had illness x 30 years and states diet doesn't seem to change anything for him.

one member discusses "hot flashes" which can be a thyroid issue (as well as a menopause issue ;)

One member discusses the thoughts of Anthony Wiliams who is a "Medical Medium".  He has a theory of Epstein Barr Virus evolving and morphing into Fibro

1 member cautions everyone to trust their intuition, and also to "set the intention" of wellness for yourself

1 member is suffering with sciatica and also recently fell and injured her tailbone

1 member participated in a workshop that was run by Fran Russo, the Shaman who was our January Presenter! 

1 member shares that a study of 22,000 people were asked to be "kind" to themselves, and that your thoughts go all the way down to the cellular level.  Apparently depression also goes down to the cellular level.  I feel a Video Blog coming on!!!!

1 member shares that if you can let go of negative energy, you will probably feel better, see entry above

1 member shares she can only stand for about 15 minutes at a time and can only drive about 25 minutes before pain is unbearable.

1 member shares that she just purchased a Medical Flash Drive to keep on her in case of emergency.  You can load on it all of your doctors, medications, diagnosis, etc...  and keep it in your wallet where 911 personnel are trained to look for identification and medical info.  It was around $8-$9 and can be found on Amazon. also she was sporting a really cute medical ID bracelet!

1 member discussed what to bring to a New doctor appointment, any x-rays, any MRIs or other tests.  Most recent labs drawn, any Summary of Visits from each doctor or specialist.  Group discussed that a new doctor may well prefer to request their own repeats of things you bring with you but it is for his own satisfaction and thoroughness. 

1 member shares that they usually request a referral from their GP to which ever specialist they need to see next, because they like that their primary doctor already has some kind of relationship with that doctor, thereby making the transition of knowledge and information a bit smoother.

Group discusses frustration that medical records are not compatible systems and that every doctors office has their own computerized record keeping.  Diagnosis may speed up once the whole system is one integrated system so that each doctor can see every summary, test and trending labs, etc...  As it stands right now, a lot of that is on the patient.

Really great meeting!

NEXT MEETING: Saturday, March 11, 2017

Until then be well my friends!