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Nancy's Nightly Newsletter  #6

March 23, 1999
 
"Finally at last, we have the directions for doing the latest dance rage to hit the nation. Some of us are still learning while others probably qualify to be teachers of this dance.
 
"Follow these simple directions and you, too, can become a certified teacher of the "Fibro Fling."   [This dance is meant to be done as a solo, but can be enjoyed by many if you are willing to tell your tale of learning the dance]
 
"Follow these basic directions and feel free to add to them if you discover a new twist or turn that will make all of us ''enjoy'' the dance more.
 
 
"1. First and foremost you have to be a human being. At this time animals have not been allowed as candidates for this dance.
 
"2. Second it is preferable if you are a female between the ages of 6 and 96. Some men qualify, but generally females make better students and teachers.
 
"3. Thirdly and probably most important you have to have a pain somewhere that is at least 3 months old and has remained your companion constantly both day and night. The more pains you have in various parts of your body the better dancer you will become.
 
"4. It is mandatory that you have been tested for at least 6 conditions other than FMS and have seen at least a minimum of 3 specialists during this testing period. Also helps if you have been told it is all in your head at least once or twice and told to rest for two weeks and it will all go away.
 
"Now if you meet all of the above, let's get down and dirty and start dancing the up and coming "Fibro Fling."  This dance can be done to the music of your choice. It was designed to do to the tunes of the Big Band Swing sounds. If you are too young to know who Glen Miller and The Dorsey Brothers are, then substitute any music you like or none at all. Music just covers up the sound of the groans anyway.
 
"The Fibro Fling is learned in 4 distinct stages. You can try to ignore one or more, but if you do skip any, you will never learn the dance.
 
"The stages are:
  1. Discovery
  2. Treatment
  3. Acceptance
  4. Dance

"1. Discovery- this stage involves many blood tests, x-rays, maybe even a few tubes stuck in places that weren't meant to have tubes. Drinking liquids, waiting in  doctor's offices, lab technicians drawing yet some more blood, waiting for test results, being told at least a dozen terrible diseases you don't have. Throughout this entire process, you are never in as much pain in the doctor's office as you are at 3 o'clock any given morning. You have nothing to "show and tell" the doctor except it hurts here and there and up there and down there too. Though usually a long process, it finally comes to the diagnosis of Fibromyalgia.
 
"2. Treatment - in an ideal world we would actually do stage 3 first, but since this is our world we are dealing with, this stage of the dance usually follows diagnosis. Treatments start to get tricky here. You should be a veteran of at least no less than a dozen courses of anti-depressants, anti-convulsants, anti-inflammatory and just about any other medicine that starts with "anti". This stage is usually divided into several lessons as after months of prescriptions that don't work, beginning dancers usually give up and turn to "alternative treatments" which can include anything from herbs to voo doo. After this back slide in lessons, most of us go back to the first stage and start all over again. This treatment stage can vary in length from 6 weeks to infinity. Some treatments seem to help for a while. Other treatments cause other problems that result in more medicine to treat the new problem while never getting rid of the original problem.
 
"3. Acceptance - This stage of the dance is the hardest one to learn and gives most people the biggest
challenge. Every where we turn, we are told to change something in our life style. This is the step we
all trip over many times. Nobody wants to be told that they can't do whatever it is they do.  It
doesn't matter what we're not supposed to do any more, we fight this step and tell ourselves we are
not going to "give in" to this disease. Somebody tells about another "new" treatment and we rush
off to try that one.  If we had lost an arm or leg due to an accident we would ''accept'' the
different life style that would present, but for many reasons, we refuse to accept that this disease
requires we accept some limitations if we are ever going to learn the dance. The longer we ignore this
step and avoid it, the harder the dance is to learn.
 
4. Dance - Here is where we finally arrive if we can just get through those first 3 stages. We are free to dance the "new" us. Hold the head up high and do what you want to do and stop when it starts to hurt. Ignore the comments of others who have no clue as to what you are dealing with. Allow yourself the joy of sometimes doing what you want to do even when it means not being able to do some of the things you are "supposed" to do. Learn to tell the difference between what we need to do, have to do and want to do.  We need to take care of ourselves, we have to change some of our life style, we want to enjoy life as much as physically possible. Talk to the people in your life who are special and you want and have in your lives. If they understand what you're going through that's great, but if they don't understand that's ok too. When each day dawns, deal with the pain and limitations this disease causes, but rejoice in the fact that it is a new dawn and you are still here. Throw away any and all guilt you feel because your disease doesn't show. Those standards by which we judge illness no longer apply. Some people in your life will leave because of this, but many will stay if you let them. This can be a very  painful part of this learning. You are the only person who can dance this dance. Do it with style and grace and embrace what life has to offer and most importantly enjoy every minute of it. Learning this dance requires change, but what in life doesn't? If you have made it through the first three stages of learning then it is time to laugh again and dance the dance.
 
"If you now qualify as a Fibro Fling dancer, then it is time for you to teach others how to dance the
dance as well."

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