June 8, 2019
In Attendance: 9
New Members: 2 Welcome Schadell and Maureen!
Collected in donations: $34
Ice Breaker: Name something you are good at and something you wish you were good at:
Nancy: good - arts (dance, singing, acting, performing); wish – cooking
Jeff: good at construction
Jo: good – singing; wish – crocheting
Schadell: good – crocheting; wish – drawing
Maureen: good – memory; wish drawing
GROUP EXERCISE to assist with grieving due to chronic illness:
- Mourn what you’ve lost, celebrate what you still have
- Chronic illness can create a huge loss in your life, you must grieve the loss before before you can move on.toward acceptance.
- Create a list for yourself of what you still have that you can appreciate as well as a list of what has been taken from you due to your illness
One member spoke about how big of a roll an animal has in the lives of people who are ill. They don’t judge you and they love you unconditionally.
One new member saw a NYC dr. who believed her signs/symptoms and MRI results = MS; however, a NJ Dr wasn’t sure its MS. She had a spinal tap, then started getting an undiagnosed ‘popping’ in her eye and feeling like being burned. She went on meds. Last year she started having problems with her legs. She is now on infusions. Her symptoms continue to progress: it’s hard to walk, and always fatigued.
Another new member has had osteoporosis and sciatica for 10 years. She also has fibromyalgia. She can’t stand- has Degenerative Joint Disease and has lost four inches of height. She has arthritis in her knees, hips, fingers, and toes; and she is always fatigued.
One member says when they try to tell people they don’t understand; they say unkind things.
One member is thinking about getting a medic alert button, and they feel like they are walking through quicksand.
One member needs to wear knee braces.
One member discussed how difficult it is to give up driving. Others agree and say driving = independence. Another member admits that it’s difficult to ask others for help.
One member feels that people who are in our life have expectations of us based more on our ‘old’ self – before the illness. It’s like we are changing but their expectations remain the same. It is important to be very clear with them about how we are feeling and what we are going through in the present.
One member mentioned that it’s difficult to distinguish what signs/symptoms are caused by flare-up from the illness verses the regular aging process.
One member will be talking with someone and say, “I’m so fatigued,” and that person will say, “Oh, me too,” but they don’t really get it. Nowadays everyone has “fatigue,” but it isn’t really the same as when its illness related.
One member is still working fulltime, but the boss continually increases the stress level and doesn’t understand the effect it has. Things have been escalating these last few months. One member suggests getting an “exit lawyer’ because it sounds like she has a case.
One member reminds the group that they all share similar experiences going from dr. to dr. and trying to find a good fit and someone who can help.
Medication: Cevimeline is used for the treatment of dry mouth especially associated with Sj?gren’s Syndrome. click here for more info https://www.webmd.com/drugs/2/drug-18092/cevimeline-oral/details
Butyoudontlooksick.com (https://butyoudontlooksick.com/) has a good personal story about living with Lupus or AI. Called the SPOON THEORY Written by Christine Miserandino; worth the read: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ We absolutely love our friends at this site! And the Spoon Theory has become a classic! Share it with your friends and family to enlighten them!!!
One member recommends a book entitled From Fatigued to Fantastic by Jacob Teitelbaum.
Hope to see you in July!
Next Meeting: July 13, 2019.
Things to Remember:
· No meeting in August Turn out has traditionally be super low due to heat and humidity
· October’s meeting (PARTY!) to celebrate our 10th Anniversary!!! will be held at 7pm on the 19th (not 12th). RSVP will be required.