Autoimmune Disease Support Group
A Central NJ Support Group Call Us at (908) 358-7167
 
     
 

Our  Mascots are Marlie and Wilson!  

Meeting Minutes: July 9th, 2016


Attendance:  9

Donations collected:   $50 (many thanks!)

Monthly expenses:   $100

Monthly deficit          (-$50)

Deficit year-to-date: (-$601)

ICE BREAKER:  In honor of Independence Day, how do you now, or how have you in the past, shown your patriotism?

  • I have an annual 4th of July party - I have 4 CD's of patriotic music that I play during the party
  • I try to see fireworks every year
  • I sing the Anthem any chance I get, even when walking the dogs
  • I have Flags around the house
  • I have Flags, and a party, and I also go to the Shrine and do a patriotic meditation
  • When I was little, we had a big celebration, even the food was red, white and blue themed
  • I see the fireworks over the East River
  • I pay my taxes! ;) 
  • We have a picnic and there is this red/white/blue jello recipe
  • I have a flag on my house year round
  • I go to Middlebrook re-enactment 
  • I got the biggest flag I could find and placed it on my grandfather's grave!
  • And last but not least, our Co-Captain, Patrick, served our country as a Medic in the Army where he had a terrible accident with a head injury and he is now 100% Service Connected Disabled Veteran.  So thank you again for your service my love!

OPEN FORUM:

  • One member is about to do a one-month trial at a local assisted living facility! She is having mixed emotions as it will mean selling her home.  Best of luck to you!  
  • One member states he is moving in 3 weeks, only half a mile away, with his son, he will have until October to vacate his current home.
    • Going from apartment to house, questions were raised as to how he would manage such a large place.  He states his son will be helping with cleaning
    • Ex-wife has arranged for lawn care
    • Group offered suggestions of for getting assistance with these tasks if need be:
  • One member states his "chauffeur is ignoring him"...  and he relies on him for transportation 
  • One member had eye surgery which was to prevent MS from progressing and taking his vision, it went well, but did not actually make current vision any better
  • One member had 3 "local" (not systemic) CRYO Therapy treatments from our presenter from the May meeting!  She states she got some benefit from it but was leary of doing the full body treatment. Here again is Julie's her website http://www.chillcryo.net/
  • One member shares that a heated spring in New Zeland has healing properties
  • Another member shares that Queens Bath in Hawaii had healing properties until the volcano ruined it
  • One member shares she's having a bad day, maybe the weather? increase in pain.  Wearing compression gloves and knee braces with copper which she shares are available at any pharmacy or on Amazon
  • She also shares that she gets good relief from a TENS unit back brace which velcros around her
  • Another member shares his pain has been increased for a few days he thinks maybe the barometric pressure.  Many members agree on this one
  • One member shares that they get 10-20% improvement from Omega XL and that you can try it for free
  • Another member says fermented Krill oil is helpful for her and also Intramax liquid which is plant based and nothing synthetic
  • One member is fighting to get disability
  • One member will be tested soon for toxic metals
  • One member shares that they thought she has R.A. but it is osteo.  She is starting Physical Therapy
  • One member shares that her family at a recent gathering was mean about her limitations.  
    • group was very sympathetic as we have all experienced people close to us who either don't understand or are unsympathetic
    • Another member shares she is currently not speaking to her brother due to the same situatio
  • One member states that every state has different laws for awarding disability and that NJ is one of the most liberal states (she is an adjuster for a company that awards or denies disability)
  • One member states that 2 weeks ago she had a major flare up.  Newly diagnosed and was lulled into thinking "i can do this"  and over-did it
    • group was supportive as many of us have experienced this same thing some of us time and time again! ;)
  • One member newly diagnosed is still working full time
  • One member trying to eat "clean food" is growing a garden toward that goal, but states it is so much work!!!  
    • all agree!!!
  • One member shares that when he is fatigued, driving a different route helps him to stay alert rather than to take normal route and go on automatic pilot
  • One member gets allergic reaction to sun, another member states that this just  happened to her for the first time with itching and burning she is also newly diagnosed
  • Some members discuss vitamin D difficiency and Rickets which we all thought was no longer an issue in the U.S., but apparently with autoimmune all bets are off! extremely low Vit D can cause DEEP BONE PAIN!  For more info:  https://www.nlm.nih.gov/medlineplus/ency/article/000344.htm
  • One member is starting therapy Cognitive Behaviorial Therapy (CBT) to assist her in her Fibromyalgia pain response  here is more information on the topic!  http://www.fibromyalgia-symptoms.org/fibromyalgia_behaviour.html
  • One member with Fibro is taking low dose Adderall for her horrible fatigue.  She shares it is a double-edged sword as she feels so much more alert on the medicine, but feels she is really over-doing it since she feels so much better...  she's not sure if ultimately this is a good thing..

NEXT MEETING:  Saturday, August 13th.  

TOPIC:  this Open Forum we ended on the word BOUNDARIES and everyone had something to say!  However, we ran out of time, so we will pick it up there!  We will also open the floor to anyone who has any suggestions on how to get the finances of group running in the black as Pat and I have been absorbing a loss every month and with his new monthly infusion costing us $550 a month, our finances are tighter than ever...  I will also share what the costs of running group are so everyone has a good understanding of what's involved.  That will all show up in the meeting minutes for Aug!  Hope to see you there!!!

SOME MEDICAL NAMES THAT CAME UP AS BEING GREAT:

Annabella Bacc holistic nutritionist

Manal Vasarani - Integrative medicine accepts most insurance plans

Lorraine Mehta - Functional Medicine 


 
 

(908) 358-7167