Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

May 3rd and May 17th, 2014

Welcome May's New Members!:  Lori, Kathy and Sandy

 May 17, 2014

Ice Breaker:  What is your favorite music "group", "song" or "concert that you attended"

TOPIC:  "Finding The Silver Lining in Chronic Illness" which really turned into "The negative loop in your head and how to change it"

  1. two new members shared their stories of their journey through their illness.
  2. The topic was started by discussing how everyone has a "cross to bear" and that in this room, our cross happens to be chronic illness. 
    1. When everything is going great in our lives and nothing is "wrong" is that a time for growth?  Probably not.  It is through pain and suffering that we are able to grow as people.
    2. One thing that we notice about the journey toward acceptance of our illness and subsequently, ourselves, is that without knowing, we can create a very negative "loop of conversation" in our own heads about our illness and about ourselves.
    3. We wrote on the board a list of negative comments that members of the group shared aloud.  Some of the comments were "I am a loser because I can't work" or "I am stupid", "No one believes I am sick" etc...
      1. It is important to recognize when your mind is circling on the "negative loop" and to challenge those statements which are likely not true, and replace the negative comment with a positive one
    4. We then wrote on the right hand side of the board a replacement comment for each negative one so "I am a Loser" became "I am a good person who did not ask for this illness" and "I am stupid" became "My worth is not determined by my ability to work" and "No one believes I am sick" became "I don't need other people's approval of my situation".
    5. We discussed how one technique for stopping the "negative loop" is to speak to yourself as if you were speaking to your best friend.  If your best friend said, "I feel like such a loser because I'm too sick to work" what would you say to that person?  You would probably be very supportive and say, "You are a great person!  This is not your fault!  You did not ask to be sick!"

***  The homework for this week.

- Identify when the negative loop is happening

- Consciously shift gears

- Replace negative loop with positive comments

- Speak to yourself the way you would speak to your best friend!

Open Forum:

  • One member got good results from a recent colonoscopy.  Members who have had this test chimed in with great emotional support
  • One member shared that they get anxiety attacks
  • One member shared this is the 3rd time out on disability from work. 
  • One member is on a long journey toward getting a diagnosis.  Possibilities include M.S. but not confirmed.  Many group members shared their lengthy journey and know the pain of that time of uncertainty
  • One member shares her daughter has Lupus and another daughter that has Type I Diabetes denoting a familial connection
  • Dr. Katz in Freehold was recommended by an M.S. member as well as University Hospital of Thomas Jefferson in Philadelphia and the Princeton/Rutgers Neurology group
  • One member shared that a bout of mononucleosis started the cascade of illness
  • One member states that traditional medicine does not offer much
  • One member shares their struggle with making the decision not to drive.  Members who have already had to face this decision were very supportive. 
    • One member shared it makes them "feel like a child"
    • See website below for a great new alternative
  • One member who is not currently driving more than a few mile radius during daylight hours discusses how difficult it is that treatments require such a commitment such as physical therapy 3x per week, psychotherapy weekly, chiropractors prefer to start with several sessions a week.  When you are unable to drive yourself, and have to rely on family member who works, how do you get to all of these appointments?  All group members either are now or have been (or understand that they may one day be) in this position
  • One member highly recommends the book "From Fatigued to Fantastic" by Jacob Teitlebaum
  • One member shares there are very few doctors to treat Fibromyalgia, there is 1 in PA near Downingtown and 1 in Stamford, CT 
  • One member states that Dr. Braccia has a treatment involving antivirals
  • One member shares a medication for Fibromyalgia "Savella" which is a non-narcotic pain modulator
  • Cymbalta is another med for fibro
  • One member shares having a good day and going to 4 different stores (gasps were audible!) and didn't realize until after that they had over-done it!
  • One member shared help from topical creams Topricin and Australlian Dream which are effective and non-smelly! ;)  Epsom salt baths are a favorite of the crowd and Salon Pas pain relief patches work well for some
  • One member shares that her spouse committed them to babysit grandchildren.  Group understands how difficult it is to take care of yourself in this situation! 
  • A big shout-out to new member Lori who knows a good deal about non-profit status and will be meeting with me to discuss potential 501(c) application!  If we can get this to happen, we will be able to apply for grant money which will pay for brochures to go in the doctor's offices (we have not received any on-line donations as of yet)  which will help us to reach the people who need us!
  • I received a call from the Mercer County Women's Journal (who saw our article in the Somerset County Women's Journal) and am awaiting an offer for a small donated space for the meeting info in the July/Aug issue!  Good things are happening!

Prayer requests for your fearless leader's right hand man, Patrick will be having his next surgery one week from today.  He will be unable to bear weight to that foot for SIX FULL WEEKS.  Please also pray for your leader's sanity! ;)

Please look forward to the blog I am working on entitled "Weeding Out Toxic Relationships". 


May 3rd, 2014

Ice Breaker:  If you could have one person (alive or dead) over for a dinner party, who would it be and why?

Items of Interest:

MERS - new viral infection brought over from another country, not treatable with antibiotics, can be deadly to very old, very young and immuno-compromised. For more info click here is a great new program matching up drivers with people who need rides.  Both parties are pre-screened with background check, $1M liability insurance, the "ap" allows you to pay so you don't have to carry cash.  You identify your driver using FB so you know who you are looking for and they arrive with a "pink mustache" on their car for easy/safe identification.  Rides are arranged any time of day!  Click here for more info

TOPIC:  no topic this week

  • New member shares their story
  • One member shared that they developed a rare symptom of Fibromyalgia in the jaw
  • One member states "I really had to handle my condition" many members chimed in that they feel that they really have to direct their own care. Doctors quite often do not know what we need or how to help
  • One member devloped a horrible rash which was biopsied but was "inconclusive", then had a bad reaction to the ointment they prescribed! Members very sympathetic to this traumatic situation
  • One member states that migraines were a sign of an allergic reaction for them
  • One member states "you have to advocate for yourself at every step"
  • Member recommends getting all records and reading every page.  They found not every abnormal test was reported to them!
  • One member shares getting a bit worse on new medication but can't go back on old medication
  • One member has a new symptom which is affecting her "good" side - a type of spasm
  • One member found a psychologist!  She looked into a "life coach" but this is not covered by any insurance and is $50
  • If you a resident of Middlesex their Senior department has a medical bus and another bus which does trips to the mall, dollar tree among other trips
  • Members discussed options for individual counseling (therapy) home visits range $150-$170 per visit per one member who researched it.  SKYPE is an option but insurance companies are not quick to get on this bandwagon! They won't pay for a SKYPE session according to this member.
  • Deepak Chopra's website got a favorable mention for meditation and great articles. 

Next Upcoming Meeting:  June 7th, 2014 2pm - 3:30 pm