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

Our  Mascots are Marlie and Wilson!  

Meeting Minutes March, 2015


March 21, 2015

Welcome New Members

One member introduced themselves.  They have Mixed Connective Tissue Disease.  Treatment plan includes starting Orencia soon

One member states they had a doctor make them cry.  Several other members chimed in with a similar experience.  (What is up with THAT???)

One member is on Ticket To Work Program which pays the employer for hiring a person with disability.  It is a program of Social Security.  Here is a link if you are interested in more information:  http://www.ssa.gov/work/overview.html

One member recommends a book, “Autoimmune Disease – Keep Working Girl” here is a link:  http://keepworkinggirlfriend.com/

One member shares challenges faced when sleeping in due to medications that need to be taken at certain times, some meds cannot be taken with others.  Some meds have to be taken with food, others without food.  Sleeping in can make that even more challenging.

Several members are having more pain today, discussion as to what could be the cause?  Weather?  Group tries to pinpoint a trigger.  One member wonders if eating tomato products could make things worse…

One member shares that they read that drinking alkaline water might be worth researching. I found this link which actually states that there is no scientific data to back up the statements.  http://www.med-health.net/Alkaline-Water-Benefits.html

There are articles to be found that say how great it is for you and how much better you will feel, and there are also articles to be found debunking this and claiming that it is a money making thing.  Obviously, just be careful and do your research before deciding.  I cannot either recommend or deny the validity of the statements.  Just be thorough and research both sides of the coin before making any changes in your diet.  Also, as always, discuss with your doctor and see if he is on board before you make any such changes.

One member who is struggling with Fibro/CFIDS (SEID) shares lab tests showing lead and tin.  These elements cannot be removed by a Brita filter. 

One member shares that there are cruise trips available for those with disability!!!  Yahoo!

NEXT WEEK’S ICE BREAKER:  Tips from Olden Times!  What tips have your grandparents passed down through the years?  Doesn’t have to be health related.  Any tips of sage advice on any topic qualify!  Bring your tips to next meeting.  (1-2 min. per person please)

WE HAVE OUR FIRST GUEST SPEAKER TENTATIVELY SCHEDULED FOR NEXT MEETING (April 4th) I will be sending out an e-mail shortly!!!

Saturday March 7th, 2015

A special welcome to the two new members!

In place of an icebreaker this week, we reviewed a 7 minute segment from the Dr. Phil show which was tucked at the last few minutes of Thursday’s episode.  It was a really great public service announcement toward getting the word out about how bad autoimmune disease can be.  (It addressed a woman’s experiences dealing with Rheumatoid Arthritis).   Here is a link directly to the YouTube clip for you to watch:  https://www.youtube.com/watch?v=7NmNu1MRhHc&feature=youtu.be     Dr. Freda Louis-Hall had lots of good information on the clip and referenced a website www.gethealthystayhealthy.com

We welcomed two new members, one with Polymyalgia Rheumatica click this link to learn more on this disease from Mayo Clinic  http://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/basics/definition/CON-20023162

And the other member is dealing with Rheumatoid Arthritis. 

One member got good results from juicing.

One member shares info on relieving chronic pain from a recent episode of Nightline on ABC.  Here is a link to the segment:  http://abcnews.go.com/Health/chronic-pain-sufferers-find-relief-melt-method/story?id=29446822  it has to do with Fascia balls.

One member is following a digestive health program for leaky gut syndrome and states she is experiencing “about a 60% improvement”.  For more info on leaky gut, click here:  http://www.webmd.com/digestive-disorders/features/leaky-gut-syndrome

One member is frustrated stating that doctors still dismiss you for CFS (Chronic Fatigue Syndrome). 

One member shared some current testing that is going on with results pending.

A conversation took place with members stating how we can enjoy an event or outing but that there is a “cost” to having fun…  there is a price to pay.  One member shared how they really plan everything looking at the calendar and doesn’t group things too close together.

One member shares that Medicare only covers 21 days inpatient rehab.

One member sticks to the anti-inflammatory foods and gave up gluten with good results.

Discussion of how people at the table have gotten sick a few days after taking the flu shot, some on several occasions.  Lots of consensus on this topic.

One member’s RA (Rheumatoid Arthritis) has damaged her eyes causing episcleritis.  For more info on this click here:  http://www.hopkinsmedicine.org/wilmer/conditions/episcleritis.html

One member shares that anger amps up the pain, several members chime in with agreement.

One member shares how many of his lab values are off and he will be seeing dr. this week to discuss.

One member shares info from the book by Montel Williams and his journey with M.S. (Multiple Sclerosis).  Entitled “Climbing Higher”.

One member shares that she knows a woman who is an “Emotional Healer”.  There was some interest on this topic from the group.

The following doctors were given a “thumbs up” by a member:  Dr. Majid with offices in Bridgewater and Princeton and Dr. Chen for acupuncture and Pain Management on Route 28 in Bridgewater.

 

Next Meeting will be:  Saturday, March 21st, 2015

** Please be aware that the hospital is doing some remodeling of the lobby area.  The journey to the conference room is almost doubled.  Should you require a wheel chair, please notify the receptionist or the security guard to get you the assistance you need.  They are there to help and assured us that it is no trouble!  So don’t feel funny about asking!

** If I know ahead of time who will need wheel chair service I can attempt to help facilitate with staff.

** The guard told us that the remodel was to take approx. 3 months, but that does not mean that we won’t have access to the main hallway for the entire time. 

** I will pass info on to you as I get it.


 
 

(908) 358-7167