Fibro Folks of Seattle Newsletter November 2007 Hope and Help is Available!
Don’t forget our meetings this week: Just a reminder that our educational support group meeting is this Thursday, November 29, 2007 at 2 p.m. Group Health Clinic Northgate 9800 4th Ave. NE, Seattle WA 98125. PARKING is available. Because individuals with fibromyalgia are often chemically sensitive, we ask that you not wear fragrances (perfume, cologne, etc.) to our events. Also, the North Seattle Weekly Fibro Folk Coffee Klatch is an opportunity for people with Fibromyalgia and their friends and family to come together for fellowship, coffee, lunch, or just to visit. Held each Thursday morning, 11:00 a.m., at the Little Pastry Cafe, 11740 15th NE, Seattle WA 98125. Like all our events, we ask that you not wear fragrances (perfume, cologne, etc.) to our events. Thank you. For more information contact: Valerie Kiesel, 206-523-4958, e-mail: valkiesel@comcast.net or check our website for more details: Fibro Folks of Seattle
Notes from your Editor/Group Facilitator At the November meeting I would like to spend some time brainstorming about the vision each of you holds for Fibro Folks of Seattle. As some of you may know, I am a Coalition Partner with the National Fibromyalgia Association, and have been approached to become one of the first chapters in the country. That will, however, require a time commitment, and volunteer work commitment, from some people other than myself. Up until now the website, newsletter, phone calls, support group, copying and speaker-finding have been taken care of by me, and it's a job that for the most part I've done willingly, except for those times when I've been under the weather. Then I get overwhelmed just like all of you. However, I have a vision of something exciting for Fibro Folks, and I hold that for all of you, too. Education for our doctors, caregivers, friends, the media. It's being done in other parts of the country. Resources are being made available to us through our partnership with the NFA, but I can't do it single-handedly as well as carry all the responsibility that I have for the support group, too. I want to see us grow and prosper. By that I mean, be all that is available to us to be. One of the ways to beat the holiday blues is to volunteer to help others. That's one of the reasons that I do the work I do with this group - it helps me get out of myself and away from my own suffering, and it gives me back so much more than I think I put into it. If each of you could do just a little (there are, after all over 100 of you), we could do great things. Pfizer this year is going to be sponsoring (paying for) Dr. Philip Mease to present a Continuing Medical Education workshop under our (Fibro Folk of Seattle) auspices, and they're also going to be underwriting our May 12 Awareness Day Symposium (Pfizer makes Lyrica). We also have a grant from the NFA to pay for a media consultant to help us with publicizing these events, since we've had such a hard time cracking the media market here in Seattle. So I would like to see as many of you as I can this Thursday! Please make an effort to be there, or send me your comments. If you have any questions, just send them to me at valkiesel@comcast.net. I look forward to hearing from you! Valerie Wojak Kiesel, M.C. Facilitator, Fibro Folks of Seattle Partner, National Fibromyalgia Association Leaders Against Pain Coalition http://www.fmaware.org Community Leaders Against Pain To read my blog go to: https://www.livejournal.com/create.bml?from=fibrofogblog and create an account Learn about Fibromyalgia at: http://groups.msn.com/FibroFolksofSeattle "I am but one, but I am one. I cannot do everything, but I can do something." Bishop Barbara Clementine Harris "The spirit we have, not the work we do, is what makes us important to the people around us."
What Are You Doing To Stay Healthy This Winter? I’ve had several people ask me what I do to stay healthy during the cold and flu season, and it’s difficult when we have fibromyalgia and/or chronic fatigue. Our immune systems can be compromised, we may not be able to exercise, or eat right. Getting out and being around others and exposed to healthy germs to build up immunities so that when we’re exposed to unhealthy germs often isn’t easy, either. Here's a reprint from what I've written up from my personal regimen and posted on the FibroFolks website: My husband has had three bad colds this winter, and it’s taken all my energy to fight off all his bad germs. Because I’m allergic to the flu vaccine, I’m not even able to take advantage of that small comfort. Each of us have to find the customized regimen that works for us. The very best thing any of us can do is to wash our hands frequently. It seems too simple to say, but washing your hands in hot water with soap and scrubbing for 20 seconds is really the best way to stay healthy. And yes, 20 seconds is important. That's the time it takes to hum or sing Twinkle, Twinkle Little Star or Happy Birthday or Yankee Doodle or the ABC Song (those were all the suggestions at our recent support group meeting - no fair singing fast, either; then you just have to sing it twice!). People look at me strangely in public restrooms because I'm singing Happy Birthday, but then you all know I'm a little strange anyway! Rinse your hands, dry with a paper towel. Turn off the tap with a paper towel, then use the paper towel to open the door of the restroom. This is what medical professionals are taught is proper infectious disease control. Do those antibacterial gels work? They're better than nothing, but handwashing works best. If you can't wash your hands, then a gel is ok. But the constant use of antibacterial product actually makes you more susceptible to drug-resistant "super-bugs" according to infectious disease control expert testimony to the FDA. Here’s what I’ve found works for me: For the flu there are several things that are in my regimen. One that I can't live without and that I start at the first sign of imbalance is Oscillo-coccinum. You can get it at the health food store or PCC. I also take L-Lysine all winter long for the immune system. There's also a supplement called Wellness Formula by Source Naturals that is wonderful for the immune system. [I've recently had to switch from Wellness Formula, which has soy (to which I'm allergic) to System Well Ultimate Immunity by Nature's Way. Same Multi-System defense complex.] I also take copious quantities of vitamin C, up to tolerance, which means until the diarrhea starts. A nutritionist also told me to take a B-complex three times a day, but I haven't had the flu since he told me that. Protein is also important when you're sick (when we're well, as well), but even more so when we're sick. Any form of protein you can handle, even if that's only scrambled eggs. And juice. Orange juice is good, but my favorite, since I'm so susceptible to bronchitis in any form of illness (flu or cold) is from Trader Joe's (PCC and the other stores that carry organic also have some like it) is a Lemon Ginger Echinacea. It's like Lemonade with a kick (ginger). I drink at least a bottle or more a day while I'm sick. I figure that's the liquid requirement that they talk about us needing while we're ill. That plus chicken soup. A doctor friend suggested the Manischewitz Matzo Ball soup mix as the best, and now whenever I get sick my husband runs out and makes me up a batch. It's the only thing he can cook and he is so proud of himself. This usually heads off any serious flu if I catch it early enough. There you have it. My regimen for the flu. I also have a regimen for the cold which includes many of the same things, with a few different supplements that are "cold" specific, like ColdCalm instead of Oscillococcinum, and Zicam every four hours. Plus Vicks Vapo Rub (yes, mom knew best), a personal steam inhaler, menthol lyptus cough drops (they really do clear up the sinus passages and soothe the throat) and some other OTC & prescription meds because of my chronic bronchitis problem. It's miserable when we get sick. We hurt more, we feel worse, we take longer to get better, and if we have pre-existing conditions, like bad lungs in my case, we can be down for the count for months (it can take me three months or more to lose a cough). And since they don't prescribe antibiotics for bronchitis, but expect your body to just fight it off, and we don't have the reserves to fight it off that other people have, we have to have a regimen to help us along. That's why I work really hard to keep my immune system as hardy as I can, because I know I can't afford to get beat up by germs because I'll really get laid low.
Know your ICE We all carry our mobile phones with names & numbers stored in its memory but nobody, other than ourselves, knows which of these numbers belong to our closest family or friends. If we were to be involved in an accident or were taken ill, the people attending us would have our mobile phone but wouldn't know whom to call. Yes, there are hundreds of numbers stored but which one is the contact person in case of an emergency? Hence this 'ICE' (In Case of Emergency) Campaign. The concept of 'ICE' is catching on quickly. It is a method of contact during emergency situations. As cell phones are carried by the majority of the population, all you need to do is store the number of a contact person or persons who should be contacted during emergency under the name 'ICE' (In Case Of Emergency). The idea was thought up by a paramedic who found that when he went to the scenes of accidents, there were always mobile phones with patients, but they didn't know which number to call. He therefore thought that it would be a good idea if there were a nationally recognized name for this purpose. In an emergency situation, Emergency Service personnel and hospital Staff would be able to quickly contact the right person by simply dialing the number you have stored as 'ICE.' For more than one contact name simply enter ICE1, ICE2 and ICE3 etc. A great idea that will make a difference! Let's spread the concept of ICE by storing an ICE number in our Mobile phones today! ICE will speak for you when you are not able to.
Heat Now Proven to Aid Central Nervous System Pain Just as I've told my doctors for years, doctors in Germany have now used EEGs to prove that heat applied to lower back pain reduced electroencephalogram (EEG) activity. That's a no-brainer of us who have been using heating pads for years, but it's huge, apparently, in the research literature. Read more about it at: http://http://www.fmnetnews.com/basics-news.php#heat
FM Research Doubles Over 10 Years In the October 2007 issue of the Fibromyalgia Network News eNews Alert it was reported that Dr. Fred Friedberg and colleagues at Stony Brook University, NY, tallied the number of peer-reviewed articles to determine research trends from 1995 to 2004 on articles related to FM, CFS/ME and the general symptom of fatigue. Here's what they found: Fatigue increased from less than 100 studies per year to well over 350. FM doubled from 120 studies per year to 240 studies per year. CFS/ME remained relatively stable at about 180 studies per year. The high number of studies on fatigue were attributed to publications that included disease-specific fatigue including cancer, MS and arthritis. The authors of the study posit that the rise in FM research "may be due in part to increased interest in the concept of abnormal pain processing.” While it is always difficult to believe that there is a bright spot on the horizon, this increase in funding, along with the constant search for a cure, truly means that hope and help is available!
