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

Our  Mascots are Marlie and Wilson!  

July, 2019

In Attendance: 8

Collected in donations: $31 (Thank You!)

** Scott won the door prize: a gift card to Starbucks. Congratulations! **

No ice breaker today.

Discussion:

One member decided to go out on short term disability.

One member stated both his/her rheumatologist and attorney suggested to go to a psychologist for depression.

One member has been dealing with hostile work environment. She states they are clearly trying to make her quit despite being employed with the company for 32 years. The group chimes in with their experiences:

-        suggests getting an attorney to handle it

-        suggests not quitting

-        one member recommends Barbara Comerford Social Security attorney 201-444-4493 (https://www.tristatedisabilitylaw.com/)

-        Another member cautions that long term disability insurance won't pay for medical health issues; only physical disability. Be sure to read your Ltd insurance policy carefully if you have one. Some do not cover pre-existing conditions that were in effect prior to the start of the policy. Know your benefits. Ask your Human Resources person to assist you or call the company directly for info.

One member doesn't do well in heat or the car without air conditioning. Several members chime in agreement

One member shares Tommie Copper joint sleeves to help with joint pain.  (https://www.tommiecopper.com/?gclid=EAIaIQobChMIxae5gP_m4wIVwZyzCh2tRghnEAAYASAAEgJ4hfD_BwE)

One member has a good effect from Aleve, over-the-counter. Always let your doctor know what medications you are taking, this includes over the counter as well as herbals and vitamins.

One member was a research subject for a doctor(geneticist) at Jefferson hospital in PA. The research was regarding how in his disease, calcium and phosphorus are binding together to form crystals in his joints.  

One member recommends going to a teaching hospital for a diagnosis.

One member has a rheumatologist that was just dropped from in-network to out-of-network. This is an almost 20-year relationship with the Doctor who provided the diagnosis and knows the entire history.   Update: This doctor was put back into the "in-network" provider list, however, there is a gap and no one seems to know what to do about the bills that accrued in the gap.

One member has been getting infusions of IGG for three years but there is a shortage and is now missing monthly IGG infusions due to this shortage.

The group discussed a few members having had the challenge of a chemical sensitivity (having chemical sensitivity is rare).

One member very taxed at work. There are changes in top management and her direct boss is super anxious, which stresses out everyone around her.

One member shares Walmart was the cheapest for her medication.

Discussed the occurrence of pharmacy markup of medications. Ie: A med that is $25 using “RX Saves” cost $75 through insurance for one member. It’s important to shop around.

One member has been feeling more fatigued than usual for a few months as well as deep muscle pain in legs.

One member is doing chair yoga offered at the library. It was also mentioned that chair yoga can be found on YouTube.

One member is having occasional blurry vision.

One member has recently had three eye surgeries for a detached retina. Symptoms include “floaters” in vision, distortion of vision like a thread hanging in your line of sight, white flashes although she didn't experience this. Those who are near sighted are more at risk for this to happen. It is emergent! As soon as you experience any of the symptoms, go to the eye doctor immediately.

One member is seeking a referral of a therapist that they like. If you would like to recommend your therapist, please let the Facilitator know and the info will be passed along.

-        The group discusses that the “hour” is really 45 minutes when seeing a therapist. The therapist can use some minutes for billing and administration tasks related to your care. 

-        The group discussed whether therapists give advice or simply try to guide you to make your own decisions. The group seems split; some therapists will give advice while others are vague.

One member states his/her sleep/wake cycle has been very off; sleeping late and going to bed late.

One member shares losing friends but will select a few close friends to concentrate on as those will be the "true" friends.

One member noted sometimes the more people you share your illness with the more advice you seem to get.

 

Next Meeting: September 14, 2019.

Things to Remember:

-        No meeting in August

-        October’s meeting (PARTY!) will be held at 7pm on the 19th (not 12th).

 


 
 

(908) 358-7167