October 19th, 2013
The topic was "What steps do you take to make sure you get to accomplish what you need or want to do?"
Members present offered their own personal strategies such as:
- Prioritize
- Listen to your body
- Pace yourself
- Make a list to keep you on track
- "Week-at-a-glance" calendar keeps family aware of where they need to be
- Prepare meals in crock pot
- Prepare a large enough dinner to set aside half to freeze for a "quick" meal on a day when you are not up to preparing dinner
- Frozen isle in grocery has complete Meal-in-a-bag
- Pea Pod grocery delivery service from Stop & Shop, other stores also have this service
- One member takes Chair Yoga at Princeton Wellness Center
- Prayer
- Meditation
One member shared that she is extremely sensitive to generic medications and one caused hives.
The group discussed that if there is no generic available for a particular medication that they have to pay full price for a Brand Name medication
One member discussed overdoing it when they are feeling well and that it usually isn't until it's too late that they recognize that they should have taken a break sooner. We all need to remember to be proactive when doing anything physical and give our body a break as often as is necessary to maintain whatever level you are at. We all agreed that this is a very difficult thing to assess.
- One member shared a warning sign that her eyes begin to burn as a signal that her body is becoming taxed and needs a rest
Shopping trips can be especially taxng on us, whether it be shopping for food or shopping for groceries. We do appreciate a bench somewhere in a store and need to know ahead of time where to go should we need to rest while in the store.
- Macy's has seating near the women's dressing room
- Shop Rite in Bound Brook has a bench near checkout
- Home Depot has lawn furniture on display for half of the year
- Bed Bath and Beyond has massage chairs for sale and are prominently displayed during the holiday shopping season
- Shop online where you can
One member takes Vitamin B-12 shots at their doctor monthly which she states helps with energy level.
Several members present have had quite high titers on their Epstein-Barr virus lab results at som point in their life. We are not sure what that link is because this has been ruled out as a cause for Chronic Fatigue Syndrome. (CFS, CFIDS).
Several in attendance are on or have previously been on long term Prednisone as part of their treatment. We all agreed that it was a really effective medication for our treatment, however, we all experienced many side effects that were all very hard to deal with. The side effects that members complained of were:
- Hunger
- Steady weight gain
- Insomnia
- Sweating
Members wondered how the upcoming changes in our nations health care system were going to affect us.
Next Upcoming Meeting: Saturday, November 2, 2013
TOPIC: Bring your ideas and short cuts for dealing with the upcoming holiday season. We will be picking names from a hat for Secret Santa (gift prices we will try to keep from $5-$10 only). We will allow plenty of time for Open Forum!
Hope to See you there!!!
Be well,
Joanne
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October 5th, 2013
The members present discussed the field trip we went on last Saturday, September 28. The members in attendance found the art exhibit entitled "Invisible" to be very interesting. The topic of pain was depicted through photographic art. The event was held to educate the public about Reflex Sympathetic Dystrophy Syndrome (RSDS) and Complex Regional Pain Syndrome (CRPS). Printed materials were brought back from the event. The exhibit also provided links should you care to get more in-depth information:
www.livingwithrsds.com
www.uspainfoundation.org
www.invisibleproject.org
The group decided to hold a Secret Santa at the December 7th Holiday party meeting. The group decided on a spending limit of $5-$10 maximum per gift.
Names will be drawn for the Secret Santa at the November 2 meeting.
Special note: THE DECEMBER 7TH MEETING will be the only meeting in December!!! Please mark your calendars accordingly.
The group discussed the fact that Somerset Medical Center is combining with Robert Wood Johnson Medical Center.
There was a discussion about how many quality hours per day each of us is currently getting. We shared how that number can vary from day to day and that sometimes it can be used as a marker of the illness itself; allowing us more quality hours during periods of improvement and less quality hours during periods of relapse.
One member shares that there is a free symposium being offered on Sunday, October 13 from 9:30 AM to 2:30 PMin New York City at the Tisch multiple sclerosis research Center in New York City. You must register ahead of time and print out your tickets. Below is the link.
http://www.tischms.org/about-multiple-sclerosis
The group also discussed the lack of medications available for Chronic Fatigue Syndrome (CFS/CFIDS). There was a drug trial being done on the drug Ampligen, however further testing needs to be completed and FDA approval is still a long way off. While the possibility of this drug brings many hope, the frustration is great with the lack of treatment available to our sisters and brothers suffering with Chronic Fatigue Syndrome at this time. For more on this topic see the link below.
http://chronicfatigue.about.com/b/2013/02/05/fda-rejects-ampligen-for-chronic-fatigue-syndrome.htm
The next group meeting will be October 19
Hope to see you there!
-Joanne
