Autoimmune Disease Support Group
A Central NJ Support Group Call Us at (908) 358-7167
 
     
 
Marlie and Wilson our mascots

Our mascots Marlie and Wilson!

July 14, 2018


New Members: 0

In Attendance:  7

Donations Collected:  $60

Monthly Operating Costs:  $100

Ice Breaker:  What are the top 3 traits you look for in a friend?

We compiled a list:

Optimistic

Respects personal boundaries

Humble

Encouraging

Positive energy

Kind

Respectful

Loyal

Funny

Caring

Good hearted

Open minded

Flexible

Easygoing

Similar interests

Understanding

 

TOPIC:  We did not have a topic this month

OPEN FORUM

One member shared that her boss is subtly targeting her due to her being in a negative on her accrued time and leave.  She is getting conflicting info from payroll who states it is OK for her to take doctors apts and sick leave without pay, but her boss is making her take pay, which is causing her to rack up more and more “negative hours” of time and leave.  She also shares that at this point he is not even approving time off for doctors’ appointments.

            Some members chimed in to offer support:

            One member offers for her to think about whether she needs to take a “short-term” disability to try to regain her footing with her illness and recommends talking to her doctor about all of the added stress and inability to get to much needed appointments.

            One member who was in management explains that in his opinion the policies in place have a clause in there that says “and/or at the managers discretion”, so the employment policies are not a “law” to follow… there is that loop whole that the manager can use… and that the language in those policies favors management.  He shares that once you are put on “performance track” for a negative pattern, that you are now under a microscope for Time & Leave (or attitude or whatever the situation).

            One member wonders if she has any kind of long term disability plan in place

            One member shares that they used FMLA (Family Medical Leave Act) of one day a week on Wednesdays, stating that it was a day of rest on most weeks, and her monthly Rheumatology follow up appointment on one of those Wednesdays.  She states it helped her to be able to manage her position for quite a while.  For more info on FMLA, click this link, it is a “.gov” website so I trust the content:  https://www.dol.gov/whd/fmla/

            One member wonders if she is “vested” at her job, and if there is any kind of Disability Pension that she could look into.

One member is going through the disability process, submitting forms, etc… started in April, has a lawyer. She shares that Soc. Sec. had sent a letter stating that they could not find her application, but that they ended up finding it!

One member shares that part of the soc. Sec. disability process is that every applicant gets sent to a Psychiatrist or therapist of some kind to rule out depression or mental health issues preventing you from working.

Some members chime in that they know of no one who has gotten approved on the first try with soc. Sec. disability, and that it seems like part of the process to have to appeal.

One member shares that it is important to remain positive and cooperative with the Social Security staff at all times.  You can catch many more bees with honey than with vinegar!

One member observes that Long Term Care policies are extremely expensive for people who have a “pre-existing condition” making it very hard to get approved for this, and almost impossible to afford on a disability income.

One member shares she is taking a psych med and doing therapy… she is learning how to “back talk” to herself, in other words, double checking with her mind as to what her repetitive thoughts are and their validity.

One member reminds us that jotting down 5 positive things per day can really make an impactful change in your life in a very short period of time. Keep a journal and see for yourself!

One member had fluid removed from his knee and is awaiting results of the fluid to see if it may be Rheumatoid Arthritis (RA) causing the pain etc…

One member has just started an anti-anxiety medication and is seeing a psychologist. She is not sure if it is helping much just yet.  Group encourages her to hang in there as these medications take a month or more to reach full benefit.

One member shares she started Klonopin for sleep and it is helping!

            Members chime in that “quality of sleep” is a big issue for many. Some describe feeling extremely fatigued but then when they lay down, cannot fall asleep. Very maddening!

One member cautions that the herbal Valerian Root can have a negative affect when combined with antidepressants. Please be sure to run any herbal medications by your Pharmacist before starting.

One member shares she has begun to use a breathing technique to help decrease anxiety, and to help fall asleep at night.  Inhale for a count of 4, Hold your breath for a count of 7, then slowly exhale for a count of 8. 

One member asks if anyone uses any good aps that they could suggest for better health. Some suggestions from the gang:

            Samsung Health Ap

            CALM

            MyFitnessPal

            Daily Yoga

URGENT REMINDER:  Group voted back in June that we would not have an August meeting due to traditionally low turn-out in that extremely hot/humid month. 

NEXT MEETING:  Saturday, September 8th, 2018 2:00 pm – 3:30 pm

PREPARE FOR THE ICE BREAKER QUESTION:  If there was one thing that you wish all doctors could know about chronic illness, what would that be?  (approx. 1 minute per person). 

***I’m sorry, but if you arrive after the ice breaker is done, we will not get to hear your input.

Hope to see you there!!!

Jo

 

 


 
 

(908) 358-7167