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

Wishing you all a Happy and Healthy Spring!!!

April 14, 2018


MEETING MINUTES

In attendance:  10

Donations Collected:  $65 (thank you everyone for your generosity!)

Approximate Monthly Expenses:  $100

Our Facilitator Joanne P was ill, so Patrick and Robbin ran the meeting!  THANKS ROBBIN!!!

And Julia took the Meeting Minutes!  THANKS JULIA!!!

The meeting began by sharing our hopes and purpose for joining the group, sharing our diagnosis was optional. Here are some of the responses:

* learning & friendship

* find people who may find a similar illness and gain wisdom

*  (fibromyalgia) camaraderie, makes you feel like you belong and are a sane and normal individual. We may all have the incompetence of doctors in common and can share these frustrations.

* (Calcium phosphate deposition) The need to vent. Diagnosis took 11 years. It’s been a difficult journey with doctors and he’s decided to mostly “throw in the towel” with medical professionals due to their incompetence.

* Hypothyroidism, EBV, fibromyalgia. Interest in research and new ways for healing. Finds that her extensive research is empowering and sometimes more helpful than what traditional doctors suggest.

* Autonomic Neuropathy due to glucose intolerance, peripheral neuropathy, brain fog, heat intolerance, standing up too fast makes her very light headed.  She does a lot of research, but mentions that no one cure works for everyone.

* Camaraderie, support friendship. (Celiac, chronic fatigue, fibromyalgia)

* Coping techniques, tips on dealing with chronic fatigue, finding out commonalities in our condition despite having a wide spectrum of illnesses.

* Wagners, which affects all organs, had chemo is in remission. She suffers from chromatosis/polyangitis (sp?). Hoping to find someone with a similar ailment. She feels in a good place at the moment.

* Has Sjogren’s disease and low IGg levels (this affects immunity strength). Should be getting a monthly infusion, but due to insurance coverage changes hasn’t been able to. The infusion now costs $900 per month (astronomical!) Doesn’t have the appropriate response to flu vaccinations and other inoculations.

 

Ice Breaker :  What have you learned/gained from having your illness?  Here are some of the responses:

– more humble, less critical of people who may not seem ill, yet own handicapped stickers.

 – humility and trying to do the best with what you’ve got

 – The ability to set aside things that don’t matter in the grand scheme of things. Politics, cultural norms…all the things that keep us divided – they don’t matter. Through this illness, I also gained faith in God.

 – let the small things go, become a peace maker, stress management to prevent flare ups,

 -  Has RA, Reynauds, Lupus – finds that Orencia infusions help her out a great deal. Gained patience, the ability to listen, went through bouts of depression

 – Gratitude, in the past – took too many things for granted. With the onset of her illness, she learned to find gratitude for what Diana still has. Count your blessings, not your troubles! Used to enjoy exercise immensely. No longer has the energy to exercise due to ATP levels and mitochondrial issues.

 – humility, gratitude, don’t sweat the small stuff, live in the moment. Looking back, she believes she’s had some form of an autoimmune illness since childhood. Her doctors never seemed to pick up on obvious signs of illness. She has learned to walk closer to God. None of us know what someone else is going through. Have the empathy to give people the benefit of the doubt.

 - He has found deeper faith. Went through hardships in the army. Found his blessing in surviving the army accident. Went into respiratory arrest and through God’s grace ended up at the ER instead of the regular doctor’s office. The exits were closed near Chimney Rock Rd…so making it to the GP’s office was never meant to be J Be patient, toward yourself and others.

 – learned to let things go and not hold on to anger. The 11 years it took to diagnose his illness has left him with a lot of resentment towards the medical community, but Scott has learned to let that anger go. He keeps a box in the home, to release anger into it symbolically. 

 – kindness towards the elderly through her work.

OPEN FORUM:

One member feels that Aleve helps to alleviate pain just as effectively as Oxycodone for them

One member feels that going to a teaching hospital sometimes allows a more extensive, effective evaluation than traditional facilities. 

One member notes that it seems that most of the national funds are funneled into HIV research.

Many members mentioned that a psychological, stressful event triggered their illness. Others had a physical trigger such as a car accident, surgery or other physical trigger.

One member believes that the potential for a cure may be unlocked through research of a genome project

Personalized Name Tags:

Addie is kind enough to offer embroidered name tags with ribbons that represent our illness. Please email Addie with your name and your ailment (optional) to get an awesomely personalized name tag. THANKS ADDIE!!!

One member’s research on Glutothione - there was a small study done which may indicate some benefit to some people.  Click here for more info: https://www.webmd.com/vitamins-and-supplements/glutathione-uses-risks

One member reminds us that anything that ends in “itis” traditionally means INFLAMMATION. For such conditions, do some research on anti-inflammatory foods..

One member states that “C-reactive protein” (CRP) bloodwork it is one of the imflammation markers. If it is not already part of your regular lab work, consider asking your doctor to add this panel to your routine tests. It may explain the root of your pain as inflammation. Here is a link to help you learn more:  https://www.medicinenet.com/c-reactive_protein_test_crp/article.htm#what_are_symptoms_of_high_c-reactive_protein

Copies of a handout on medical marijuana were passed around. A member has found that edibles in California have helped alleviate her pain and improved her sleep. The strains that don’t contain THC tend to be more medicinal and less hallucinogenic then traditional “pot”. Indica tends to be more mellow and relaxing then Sativa strains. This provides the pain relief we need as opposed to creating a “high”. One issue with cannabis products is the lack of knowledge of dosing. Even physicians who believe in complimentary medicine are not equipped to prescribe specific doses to treat specific illnesses.

With a show of hands, it was decided that there is strong interest in having meetings in July and August.

A canvas tote was passed around for the collection of funds to support our group.

Next meeting is Saturday, May 12th.


 
 

(908) 358-7167