August 2006

 Vol. IV, Issue #31

          Bergen CFS Support Group Newsletter

Meeting Report

Our meetings resume on Sunday September 17^th.  Subsequent meetings will be held on the third Sunday of each month through May.  In June the meeting is held on the second Sunday since the third Sunday is Father’s Day.  The topics for this year’s meetings have not yet been finalized and we hope to include the schedule in the September newsletter.  We do have one voluntary activity that will be available at the upcoming September meeting.  We have been asked by a student to participate in her research project by completing a Fibromyalgia questionnaire.   If you have FM and are willing take a few minutes to answer the questions, please come to the meeting.  This student, whose Mom has FM, has taken an interest in this illness that many of us know all too well.  This will not be the sole activity of the meeting – so please come even if you do not take part in the questionnaire.

 

Question

A couple of years ago we highlighted some agencies that might be helpful to some of our readers.   They include www.Rx4nj.org , http://www.rebuildingtogether.org and www.nj211.org/municipal.cfm.  A southern NJ support group has asked if anyone has had experiences with any of these groups and what comments could they offer.  If you have contacted any of these agencies, please contact me let me know if your experience was positive or negative.  Send your responses to pat@larosas.net.  Thanks.

 

For Your Information                                                                                          

http://www.intelihealth.com/IH/ihtIH/EMIHC267/24479/48265/263963.html?d=dmtContent

Medications: Make No Mistake                                                                                                    

Drug mix-ups kill thousands of people every year.  Here's how to protect yourself.                                                                                                                                                                                                                                                       

In November 1999, the Institutes of Medicine released a report that focused public attention on widespread medical errors. Quite often, these errors are drug related and are fairly mild and resolve. Unfortunately, some adverse reactions are severe. Researchers had found that each year some 44,000 Americans die as a result of such errors.

Although not every possible mishap is within your control, there are plenty of ways to help keep yourself safe from harm — both in and out of the hospital. The following tips include many from the Institute for Safe Medication Practices.

What To Do . . . In The Hospital

• Start with a complete drug review. Bring to the hospital either a complete list of all your medications or put all the medications in a bag. This includes all prescription and over-the-counter drugs, as well as herbal products and other supplements. Although the hospital will use its own supply of medications needed during your stay, at least the staff will know what you've been taking.
• Ask the name and purpose of every drug you're given during your hospital stay. This keeps you informed — and forces your caregivers to check what they're administering.
• Identify a professional who will communicate with you once a day to explain dosages. The best is your admitting primary care physician, but nurses and house staff can all be helpful.
• If you get a medicine that looks different from what you're used to taking, speak up immediately. Maybe the brand or dosage was changed — or maybe someone made a mistake.
• Competent staff will always check each patient's identification bracelet before administering any medication. Make sure they do.
• If a family member helps you at home, have them advocate for you when you're not feeling well. They'll monitor all the drug changes with you.
• If you feel unwell after a medicine, notice a rash, or have a stomach upset let your medical team know. A side effect may be appearing.
• When you are getting ready to go home, ask questions about your medicines — what each one is for, how to take it, what to do if you miss a dose, what side effects to watch for, and how to avoid interactions.

. . . In The Doctor's Office

• Each time you see your doctor, do another drug review.
• When your doctor writes a new prescription, take notes: what is the brand name, generic name, the purpose, dosage, how to take it and how long to take it. Increasingly, more drug information is becoming available on the Web, or your doctor can provide you with some written information.

. . . At The Pharmacy

• Talk to your pharmacist about your medications.
• Every prescription dispensed today should come with a patient information sheet describing everything you need to know about the drug. If you don't get one, ask for it. Then read it.
• Let the pharmacist know all the medicines you take.
• Consider patronizing a single pharmacy. Doing so increases the chances that computer records will flag potentially dangerous drug combinations.
• If you get a refill and the packaging or the product looks different than it did the last time, find out why.

. . . At Home

• Read the information sheet before taking any drug - and read the label each time you take it.
• Don't take an expired drug, unless you have shown the bottle to your doctor or pharmacist.
• Discard drugs you no longer take.
• Don't take drugs in darkness, no matter how sure you are that you're grabbing the right bottle.
• Store all medicines well out of reach of children.
• If you are a complex patient (more than three prescription drugs), it is advisable to have a "buddy" system. Someone can check your daily intake of medicines, ensure you are on schedule and know of all the changes being made. A diary is helpful if you noticed a new symptom after a certain pill.

Last updated June 14, 2006

 

NJCFSA Conference    SAVE THE DATE!!!!

The date has been confirmed for Sunday, October 22^nd.  Judy Machacek is still seeking more volunteers to help on the various committees. If you might be able to help in any way, Please contact Judy at 201-836-7391 or judymachacek@msn.com.  We all know that we manage our illness best when we share the load.

Tasks – Some areas have volunteers but extra help lightens the load.

 

Registration: of Attendees

Coordinator: to work with Hospital and Hotel, re: room and food arrangements

Brochure: creation/design and distribution

Equipment: coordination of equipment needs for speakers, etc.

Video capture: find inexpensive service or student to DVD record and edit conference

Advertising:  Obtain advertisers, and notify newspapers, etc.

Mailing and Distribution: Attach labels and stamps, hand out to other prospective attendees

Exhibitors: Find exhibitors to pay to be at Conference for a fee

CFS Exhibit Support:  Work with Pres. Peg Walk to hand out CFS brochures, etc.

Printed Materials: Work with speakers to prepare handouts: and agenda for meeting

Day of Conference Coordinators:  help with speakers, registration, etc.

 

There will be several people on each committee and no one will be asked to work alone or without assistance from me. Thanks to all in advance.   Judy

 

The NJCFSA is also looking for help for the Spring 2007 conference.  While this may seem to be far in the future, it takes months of planning and work to prepare a conference.  If you can help, please contact Judy.  Her contact info is listed at the top of this section.

 

Next Meeting

The next scheduled meeting will be on Sunday, September 17^th.   We hope to see you.  Have a great summer.  BE WELL.  Keep cool since heat and humidity can aggravate symptoms of CFS and FM.

This newsletter is intended for CFS patients in the area of this support group.  The purpose is to share information and support.  If you have questions about meetings please contact Group Leader Anne at annielaurie617@yahoo.com.  Subscription problems: Nancy Visocki at nvisocki@verizon.net. Editor: Pat LaRosa at pat@larosas.net.