Autoimmune Disease Support Group
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Our mascots Marlie and Wilson!

Marlie 

July 18th, 2015 (no mtg 7/4/15)


Meeting Minutes

July 18th, 2015  (we did not have a meeting on the 4th of July)

TOPIC:  Open Forum

Ice Breaker:   If you had one skill/talent (past or present – obviously in our own perfect world) that you do/did so well that you would consider entering into the Guinness Book of World Records, what would it be?  Some of us would be famous for being the World’s Best sprinter, Foul-ball shooter, marathon runner, ballroom dancer, pogo stick hopper, to name a few

Attendance:  9 members

Collected in Donations:  $13 towards monthly operational cost of $120 ($120 - $13 = -$107 deficit in operational expenses for July

New Member:  Welcome Sarah!

**At the start of the meeting, a vote was held.  We had originally set our 2nd Annual Caregivers Day (where members are encouraged but not required to bring a family member/friend/spouse/caregiver to the meeting on August 15th)  Our Guest Speak on Emergency Preparedness from the Red Cross was hoping to come on August 15th so I put it to a vote if we could change the Caregiver’s Day to September 19th.  The group voted unanimously to have the Guest Speaker from Red Cross on 8/15/15 and the Caregivers Day is moved to September 19th

I need to address lateness here.  Of course we all run late on occasion and with chronic illness, it makes it twice as hard to arrive anywhere on time.  We all get that. However, please note that arriving late has consequences:  #1 You miss important information that I have to share before we start the meeting.  #2 You miss the chance to vote on things that affect you directly, and perhaps most importantly, #3 you miss what your group-mates are sharing about.  Those group-mates will listen intently while you share what you are going through, but your lateness prevented you from supporting your friends!  And perhaps they shared something that you are also going through!  So that important interchange is missed and the experience of a group setting is altered for them and for you!  So if you are chronically arriving late, please choose to be more courteous to your group-mates. Also, I start on time and need to end on time as we have members that are being picked up and dropped off. 

 

  • ·         One member is trying to taper down from steroid therapy
  • ·         One member is waiting to hear if she will be accepted at the Mayo Clinic in Minnesota for the Rheumatology team to thoroughly assess her and collaborate on a treatment plan
  • ·         One member shares that her family is “mad” that she can no longer host all of the family parties/gatherings
  • ·         One member has started on Orencia infusions
  • ·         Group discusses “Functional Doctors” who try to find the root cause of the problem instead of treating the symptoms with medications
    • o   Most however, don’t take insurance
    • o   Charge crazy amounts! Like $700 initial visit and $200-$300 subsequent visits

    ·         One member states it has all to do with MONEY and not about YOU!

    ·         One member describes how bad her brain fog is stating that she is thinking but cannot verbalize her thoughts to others!  Especially frustrating during E.R. visit when it is extremely important

    ·         One member shares that if you are hospitalized for anything, make sure you learn to “play the insurance game”…  during a hospital admission reach out to your primary or rheumy and get a prescription for whatever labs they want drawn because during the hospital stay, all of this should be covered whereas, as an out-patient, you will be paying quite a bit. (the doctor may have to have privileges at that hospital so be sure to look into it with your insurance carrier)

    • ·         One member recommends when you do call your insurance carrier to get labs covered as an in-patient (or any time you need to call them to clarify anything) to write down the name of the person you spoke to, the date, the time and keep it with the lab slip. 
    • ·         One member cautions us to be wary of doctors popping into your room during a hospital stay to “consult” on your case as they don’t have to accept your insurance and then once you are home you will be getting outrageous bills from doctors you don’t even know!  You have the right to ASK if they take your insurance before they speak to you, and to REFUSE them as a consult if they do not!
  • ·         One member shares that she has Rheumatoid Arthritis (RA) but states she is chronically fatigued which prompted a discussion of how Chronic Fatigue Syndrome (CFIDS/CFS) differs from just being regularly tired.
    • o   One member with CFIDS/CFS/ME/SEID states that it is one of the most difficult patients to treat because they typically do not tolerate medications well.  They may have bad side effects to medications.
    • o   She shares that there is now finally a set of criteria that they have put in place to help reach a diagnosis of CFIDS which includes unrelenting fatigue for a period of 6 months or more and 4 out of 8 other criteria.  For more, check out this link from the CDC:  http://www.cdc.gov/cfs/diagnosis/index.html
    • o   She shares that funding for this disease is a “joke” even though probably 2 million people are walking around undiagnosed.  Many of them being told it is depression.
    • ·         Discussion on how some doctors are dropping health care companies so it is important to check with your doctor prior to each visit because things change!
    • ·         One member discussed how Orencia is administered, Intravenous every two weeks for 3 infusions and then every 28 days.
    • ·         Member shares she is a very hard stick (to get blood or start IV)
    • ·         Members discuss importance of bedside manner
    • ·         One member shares her experience with Uber as a mode of transportation.  From what was shared, the drivers are pre-screened for safety and insurance and criminal background checks, etc..  as well as the people who are looking for a ride.  You are sent a picture of the person and car that will be coming to get you.  A fee is agreed upon between you.  You can select from drivers that are closest to where you are at the time.  This seems like a very cool solution to some of our members who are unable to drive.  Check it out at www.uber.com

 

NEXT UPCOMING MEETING:  Saturday, August 1st, 2015 Open Forum

                                                     Saturday August 15th, 2015 Disaster Preparedness Red Cross Guest Speaker

                                                     Saturday September 5th, 2015 Open Forum

                                                     Saturday September 19th, 2015 Caregiver Day

 

 


 
 

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