Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

September 6th and 20th, 2014

Saturday, September 20th, 2014

ICE BREAKER:   We paired off and talked privately to find things we have in common with the person across from us.  Then we read them all allowed and counted how many items we had in common with the rest of the people at the table!  We got to know each other better!

TOPIC:  Direction we would like to take the group

One member offers to contact doctors offices.  She will type up a letter and send letting them know we are here and including brochures.

One member offers that once we gain non-profit status that we could apply for grants to fund certain tasks such as brochures, business cards, and getting the word out that we are here to the public and doctors offices. 

One member thinks that perhaps getting volunteers from high school or college could be of help for free manpower in the meantime.  They need volunteer hours for their resume etc.

One member just started a new full time job.  Someone is advising her to disclose her illness.  She asks for feedback from the group.

One member is in school and had two classes per day but is dropping to one class per day this semester due to energy levels.

One member is fighting with headaches and asks the difference between headaches vs. migraine.

Rolfing was discussed by one member who went through a 10 session course of treatment

Two members have jaw pain with Fibromyalgia

One Fibro member uses a mouthguard at night which was made by her dentist for help with grinding and sleep apnea

One member is feeling more independent with the use of her new speedy electric wheel chair!

One member works from home.  It is a lot of paperwork for her which is tricky with Chronic Fatigue Syndrome (CFIDS)  Her family has to pay for their healthcare also. 

One member recently lost a furry member of her family and is still grieving hard.  Group understands completely.  Many members have four-legged children.

One member is managing with a busy schedule of school 2 full days a week plus an 18 hour per week work-week!  Yay!

One member shares they are going to a birthday party for one of his “out-laws”…  have fun!

One member discusses the Paleo Diet, another member shares the book “The Wohl Project” by Terry Wohl which claims to reverse MS. 

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Saturday, September 6th, 2014

ICEBREAKER:  What is one of your Pet-Peeve’s?

Some of the answers where:  People that lie.  People who are not on time for appointments.  People who can’t move on from life events.  Dealing with fatigue.  Being alone.  People who look at me funny for parking in handicapped parking.  Other people who have my disease but are better off and ask why can’t I do this or that when they can.  When friends ask me to go to a specific type of restaurant and I’ve told them repeatedly that I cannot eat that kind of food. People who don’t believe I am sick. People who have to give me unsolicited advice.  People who are on their phone when they are out in a group. People who are jealous that I cannot work.  People who are ignorant.

No topic this meeting

Topics discussed:

One member got a new motarized wheel chair “EZ lite Cruiser” which is 50 pounds and folds up! Very exciting!

One member shares that there is a flea market in Warren Firehouse every Sunday from 9am - ?  during warm weather months.

One member shares Devine’s Pharmacy delivers for free!

One member shares that they look on-line for restaurants and look over the menu and decide ahead of time what they will order.  Great tip for dietary restrictions!

One member says she feels like a human guinea pig! 

One member shares that some treatments work for some time and then stop working

One member shares that Dr. Mehmet Oz did a segment on Leaky Gut Syndrome.  The walls in the intestines can change and allow toxins to seep through into the gut.  The toxins can cause irritation and inflammation anywhere in the body!

One member shares that Systemic Candida can cause some of the symptoms.  Please discuss with your doctor if you would like more information to rule this out.

One member shares that an Integrative Pharmacy uses a mixture of traditional medicine and alternative medicine with a focus on nutrients the body may be needing.

Two members agree that doctors do not care if you are under weight. 

Some members get some benefit from acupuncture.

One member shared that they found the book Overcoming MS to be helpful.  It is an evidence-based eating plan.  (The Wohl Project).