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Welcome to the December issue of FM/CFS/ME RESOURCES Newsletter. We hope you enjoy
this months edition.
We would like to wish
all our readers a Happy Hanukkah, a Merry Christmas, and a Happy Kwanzaa.
If you have specific ideas or topics you'd like
to see covered simply click the suggestion box below and we will do our best to address
them in the coming months.
Click Here to sign-up for your
FREE subscription.
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Holiday Survival Guide
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Surviving the holidays can be tough for even the most energetic people to get through.
For those of us with Fibromyalgia (FM) and Chronic Fatigue Syndrome/Myalgic
Encephalopathy (CFS/ME) it can be a nightmare.
Help avoid a holiday meltdown by following these nine steps:
Step #1 - Planning
Make a list of everything you want to accomplish. Be extremely detailed - include:
- shopping
- decorating
- baking
- wrapping presents
- assembling toys
- stuffing stockings (if you have young children)
- attending parties and family functions
Think about everything you've done over the past few holiday seasons and put it on the
list. I recommend doing this right after the holidays, while your memories are fresh
and you're more likely to be realistic.
Step #2 - Prioritize
Now, take your list and prioritize it. What things are most important to you? What
absolutely has to happen for your holidays to be happy?
A temptation here is to think about what everyone wants. For those of you with
young children, the biggest priority is making things perfect for them, but if you
find yourself prioritizing based on your mother-in-law's, brother's, and great-aunt's
needs, STOP! While you may want to take care of everyone, you need to be realistic
and take care of YOU first! If Aunt Betty wants a pecan pie, she can bake one herself.
As you prioritize, think not only about what's important, but what you truly love to do.
If wrapping presents with lots of elaborate ribbon and bows makes you happy, don't
short change your own enjoyment by going with gift bags or delegating it to someone
else. This season is about joy, so don't give that up!
Step #3 - Pacing: Cut It Down!
Pacing yourself is the key to surviving every day with FM and CFS/ME, so don't forget
it during the busy times! Now is when you need it most.
Several steps go into pacing, and the first is cutting down your list. Count up your
items, and cut out the half that are lowest priorities. Don't worry about those
things anymore - you've already determined that they're non-essential and don't bring
you joy. You don't need them, and they'll only bring you down.
Step #4 - Pacing: Simplify
Do you have some items on your list that you could do in a simpler way than you have
in the past? I've always loved walking around the stores, soaking up the "Christmas-ness"
of the season. However, shopping and walking through stores is one of many things I'm
unable to do anymore. So what I do now is a lot of online purchasing, which is really easy
now that I know what I want and where to get it.
If I can't buy what I want online, or I can get a better price locally, I only go to
one store a day. If I need to do more or I'm getting multiple things, I bring my mother
along to push my wheelchair so I don't exhaust myself completely. (Yes, at first it
feels strange to be in a wheelchair, but I've learned it's the only way for me to have
a life.)
Step #5 - Pacing: Delegate
Now look at your list again and see what someone else can do. If you've traditionally done
a big dinner, turn it into a potluck. Who can come over to help you decorate or set
the table? Who can help you clean up? You might be surprised at how much people are
willing to do to help you.
If no one's willing to help, then what? If it's a family dinner or gathering, perhaps
their unwillingness to help shows that it's not a priority for them, which means it
doesn't need to be a priority for you!
Keep in mind that making holiday tasks a group affair can make it a lot of fun! Get family
or friends involved in decorating while you serve hot chocolate, and while everyone's
over, have some strong, healthy person shovel the walk for you or hang your outside lights.
Step #6 - Pacing: Cut Again!
Now that you've seen what can be simplified and what can be delegated, take another look
at your list. Consider the amount of hours it will take you to accomplish everything on it.
One of three things is likely happening as you do this:
- You've done such a great job that you're thinking, "Wow, this is totally do-able!"
- You're thinking, "It's a lot, but I'm determined to make the holidays perfect!"
- You're starting to get that panicky feeling and thinking, "I can't do it!"
For you number ones, as long as you're being honest with yourself you can now move on to
Step #7.
If you're a number two, STOP! Be honest, and think back to the last time you forced
yourself to work that hard. Realistically, if you go into it with that mind set, you're
likely to wear yourself out, stress about what you're not getting done, and send
yourself into a major flare-up.
If you're a three, take a deep breath. You don't have to do all of that!
Twos and threes - start cutting again, and whittle that list down to about half of what
it is now. I know it's scary, but if you get everything done and have the time and
energy, you can always revive some of the things falling by the wayside now.
This might feel selfish, but if you had a broken leg or a brain tumor, you'd
forgive yourself, wouldn't you? Just because other people can't see or possibly
don't understand your illness doesn't make it less of a real impact on you and your life.
Step #7 - Back to Planning: Fill in the Blanks
Now's the time to figure out when you can get things done. What can you be working on
in, say, September? Make notes on your list of when you want to start things. Get out
a calendar with any parties or events written on it so you can plan to have down time
before and after. (Don't plan to shop or hang lights the day after a party, you know it
won't happen!)
As you start to identify busy days, think about how long you can typically be functional
at a time and schedule rest periods. If you can usually handle 4 hours of activity, cut
it down to 3 hours of activity with an hour to rest. Then you'll be able to handle
more periods of activity.
Step #8 - More Pacing: Listen to Yourself
If you get half way through the season and your body is sending warning signs, listen to
it! You may need to revise your list as you go in order to keep yourself functional.
Step #9 - Recovery Time
After a busy period, we need some recovery time. On top of scheduling downtime throughout
the season, make sure you give yourself a few days to recover afterward.
FM/CFS/ME RESOURCES wishes everyone Happy Holidays!
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FAQ's About Disability Attorneys
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Do I Need A Disability Attorney?
A: The Social Security Administration (SSA) doesn't
require you to have an attorney, you can represent yourself. Professional representation is
a valuable service. The disability determination process is complex. Claimants without
professional representation appear to be far less likely to receive the benefits to which
they are entitled. For example, in 2000, 64% of claimants represented by an attorney were
awarded benefits at the hearing level. However, only 40% of those without representation
were awarded benefits at the hearing level.
Do I Have to Pay The Attorney's Fee?
A: You're probably wondering, "How can I afford an
attorney when I am not working?" The answer is simple, you only pay the attorney a fee if you
win your case. You do not pay an attorney up front. Generally, every disability attorney will
represent you on a contingency fee basis. This means you do not pay an attorney's fee unless
you win your case. Thus, everyone seeking disability benefits can afford an attorney. The
question you should be asking yourself is "can I afford not to be represented by an
attorney?"
Are Attorney Fees Regulated?
A: The SSA and federal law set the attorney's fees in
disability cases. The standard fee agreement most attorneys use states the attorney's fee is
contingent upon winning your case. The fee is 25% of all past due benefits for you and your
family, up to a maximum of $5,300, or whichever is less. Some attorneys may use a fee
agreement which provides for a maximum fee of $7,000.
The attorney's fees are usually only a fraction of the benefits you receive; depending on the
amount of your past due benefits, it can be a very small fraction.
What Is My Case Worth If I Win?
A: The SSA and federal law set the attorney's fees in
disability cases. The standard fee agreement most attorneys use states the attorney's fee is
contingent upon winning your case. The fee is 25% of all past due benefits for you and your
family, up to a maximum of $5,300, or whichever is less. Some attorneys may use a fee
agreement which provides for a maximum fee of $7,000.
The attorney's fees are usually only a fraction of the benefits you receive; depending on the
amount of your past due benefits, it can be a very small fraction.
Does Hiring A Disability Attorney Increase My Odds of Winning?
A: There are many reasons hiring an attorney can
significantly increase the odds of winning your case. One significant reason is that
disability attorneys understand the complicated laws and regulations that determine success
or failure.
They know what you need to prove in order to win your case, and they know how to go about
proving it. Hiring an attorney who specializes in Social Security disability law is
extremely important because they have the expertise in representing people with your type of
diagnosis.
It is also important that your attorney believes in your case and that they can win it. I
suggest you ask the attorney how much experience they have with your type of diagnosis and
how often do they win? Any disability attorney should be willing to provide you with this
information.
How Soon Should I Hire An Attorney?
ANSWER: From the beginning, the attorney should set forth a
strategy that you both of you should follow to win your case. It is critical to understand
what is necessary to prove your case and how you will go about winning it. The sooner you
know this, the sooner you can take steps to execute the strategy and thereby increase your
odds of winning. Thus, you should consult with and hire an attorney either when you file your
claim or as soon thereafter as possible.
I encourage you to consult with an attorney as soon as possible to help you understand the
process. The consultation should not cost you anything except your time. By understanding the
process and having a strategy, you will significantly increase your odds of winning your
case.
Is There A Right Way To Fill Out The SSA Forms?
ANSWER: Judges don't usually approve your case based on
what you say on the forms. However, they often use what is said in the forms to support a
denial of your claim. This is because if the SSA or a judge is going to approve your claim,
they will base it on more compelling objective evidence such as medical records and/or
treating physicians' opinions regarding your inability to work.
Here are a few tips when completing the SSA's forms that should significantly reduce the
likelihood of making a serious mistake that comes back to bite you in the you-know-what!
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Limit your answers to the space that has been provided and do not write in the margins or
attach additional sheets of paper.
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Answer all questions as if you're having a bad day. Simply put, if you were back working
on a sustained basis, most likely every day would be a bad day.
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You should mention all the diagnoses that have even a small impact on your inability to
work. Use 5% of the allotted space to reference diagnoses and 95% to discuss the frequency,
severity and duration of your symptoms and limitations. Explain how they limit not only your
ability to work but also your ability to function on a daily basis.
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Before you became ill you were probably an organized perfectionist who was incredibly
productive. Everything in your life had its place; I know it kills you it is not that way
now. However, this is not the time to be a compulsive, organized perfectionist!
One of the hallmarks of your inability to work is your concentration problems, memory
impairment and brain fog. Your life is now an unorganized mess. The SSA needs to see the
real you and not a top notch administrative assistant who is articulate and possesses
phenomenal organizational and typing skills. Do not typewrite your answers. Always handwrite
them even if your answers become illegible. The clarity of your handwriting and the way you
answer the questions tells a lot about the severity of your concentration and memory
problems.
I remember it took me several days to complete my SSA forms. Your goal should be to have your
answers look like it took you days. In fact, if it did take you days, make sure you tell the
SSA that somewhere on the form.
Although the primary reason you are unable to work may be due to a physical diagnosis,
don't overlook the psychological issues that often arise after years of dealing with chronic
pain and fatigue. You want to win your case anyway you can, whether it is due to physical or
psychological problems, or quite frequently, a combination of both.
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Weather & Fibromyalgia Pain: Are They Related?
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Cool temperatures, humidity and high atmospheric pressure may be associated with
spontaneous pain among individuals with Fibromyalgia (FM), new study findings show.
"These results support the belief that weather influences rheumatic pain, albeit in
different ways, depending on the (underlying disease) and (the patient's)
weather sensitivity,"
Reported Dr. Ingrid Strusberg of the Centro Reumatologico Strusberg in Cordoba City,
Argentina, and her colleagues.
Strusberg's team analyzed questionnaire responses from 151 individuals with FM,
osteoarthritis or rheumatoid arthritis. Osteoarthritis refers to joint inflammation and
pain that most commonly occurs among older adults. Rheumatoid arthritis also
features inflammation and pain, but the symptoms arise from an abnormal immune system
assault on the body's joints.
In the study, participants reported on their pain symptoms and causes over one year.
For comparison, the researchers also looked at 32 healthy individuals. These reports
were correlated with meteorological data for the Cordoba area.
The researchers found that for participants with all three conditions, pain was
significantly associated with low temperature. In addition, pain was related to high
humidity and high atmospheric pressure among rheumatoid arthritis patients, and high
humidity among osteoarthritis patients, according to findings published in the February
issue of the Journal of Rheumatology.
For those with FM, pain was associated with low temperature and high atmospheric pressure.
No correlation between weather and pain was found among individuals in the comparison
group, the authors note.
"Our study supports the possibility that meteorological factors can have some effect
on spontaneous pain in rheumatic patients."
Reports Dr. Strusberg's team.
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Chiropractic Care and Fibromyalgia
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Though often termed an alternative treatment, chiropractic care is now becoming more
accepted by the mainstream medical community. Almost 20% of American men and women have
used the services of a chiropractor at some point in their lives. 80% of those who
use chiropractors report significant pain relief, better functioning, and an increased
sense of well being. But what theories are chiropractic care based on and what exactly
does a chiropractor do?
Chiropractic care is based on the theory that illness and pain are caused by misalignments
in your skeletal structure. It sees the body as a connected system, which relies on
your bones, joints, muscles, ligaments, and tendons to keep it functioning efficiently.
When your skeletal structure is sound, your body should feel healthy and happy. But if
parts of your skeleton are slightly off balance, it could cause serious problems, like
chronic pain.
Chiropractors aim to solve pain and related symptoms by correcting the imbalances in
your skeletal structure. Through a series of techniques, including stretches, adjustments,
and manipulations, your chiropractor will restore your skeletal balance, thereby
eliminating any pain symptoms.
Fibromyalgia (FM) patients have been seeking chiropractic care increasingly often. Because
FM causes numerous tender points all over the body, many FM patients suffer from back
pain, neck pain, and leg cramps. In an attempt to solve these problems, many sufferers
have looked to chiropractors. Because simple adjustments to the neck and spine can restore
the carriage of the whole body, a lot of FM sufferers find that alignments of the spine
can significantly reduce pain all over their bodies.
How Effective is Chiropractic Care in Fibromyalgia Patients?
Numerous studies have been conducted analyzing the benefits of chiropractic care in
FM patients. A 1985 study asked 81 FM patients to indicate drug or alternative treatments
that best relieved their pain. Chiropractic care treatment scored surprisingly high in
this study. Another study examined the effectiveness of spinal manipulation in relieving
FM symptoms. After just 15 treatments, FM patients suffered from less pain and fatigue,
and actually enjoyed better sleep quality.
Types of Chiropractors
Though chiropractors often use many different techniques in their treatment programs,
most fall into one of two main categories:
"Straight" Chiropractors
Straight chiropractors are considered purists, as they adhere more strictly to the
original teachings of chiropractic medicine. These practitioners tend to focus on
performing manipulations to restore body function and relieve pain.
"Mixers"
Mixers are chiropractors who combine techniques of manipulation and adjustment with
other holistic techniques, including diet, exercise, and massage. The majority
of chiropractors are mixers.
Depending upon the type of chiropractor you see, you will likely undergo a variety
of different treatment techniques. The most popular chiropractic techniques is
manipulation.
In order to adjust the spine and neck, a technique called manipulation is
performed. Manipulation usually consists of a short, quick thrust to one of the
vertebra in your spine, achieved through twisting, turning, or hand pressure. This
causes the vertebra to shift back into its proper place.
When it is performed, you may hear a cracking or popping noise. This might sound scary,
but it is actually a healthy release of built up oxygen, nitrogen, and carbon dioxide
within the joint. As these gases are released, you should notice immediate relief,
though sometimes manipulations can cause slight discomfort.
Manipulations can provide numerous benefits including:
- better range of motion in your joints
- increased blood flow (which helps to release toxins and promote muscle healing)
- increased production of endorphins, your body's natural painkillers
- better pain tolerance
Side Effects of Chiropractic Care
Chiropractors often come under fire from some medical doctors because of the possible
dangers of chiropractic care. On rare occasions, manipulations have been known to
cause internal bleeding and blood clots. Manipulations are also associated with
increased risk of bone fractures in those with degenerative diseases like osteoporosis.
More worryingly, manipulations of the neck and spine have been associated with an
increased risk of heart attack and stroke. It is recommended that you speak with a
health care professional before engaging in any form of chiropractic therapy.
Choosing A Chiropractor
It can be very difficult to find a chiropractor that is right for you, especially if you
are suffering from FM. Here are some tips to keep in mind before settling on a chiropractor:
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Be sure to find a chiropractor that is qualified. Chiropractors must be licensed by
the state in which they practice. They should also have passed National Board exams
Parts 1, 2, and 3.
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Ask friends, family members, and coworkers for recommendations.
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Ask for references.
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Do a phone interview before making an appointment. Be sure to ask about the techniques
that are performed and the theories that underlie them.
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Go to the office and check it out. It should be clean, welcoming, and professional.
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Avoid chiropractors that seem dogmatic about one particular school of thought.
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Avoid any chiropractor who promises to "cure" chronic ailments like
FM, diabetes, and arthritis.
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Hanukkah
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Hanukkah is celebrated for eight days and nights, starting on the 25th of Kislev on the
Hebrew calendar (which is November-December on the Gregorian calendar). In Hebrew, the
word "Hanukkah" means "dedication."
The holiday commemorates the rededication of the holy Temple in Jerusalem after the Jews'
165 B.C.E. victory over the Hellenist Syrians. Antiochus, the Greek King of Syria,
outlawed Jewish rituals and ordered the Jews to worship Greek gods.
In 168 B.C.E. the Jews' holy Temple was seized and dedicated to the worship of Zeus.
Some Jews were afraid of the Greek soldiers and obeyed them, but most were angry and
decided to fight back.
The fighting began in Modiin, a village not far from Jerusalem. A Greek officer and
soldiers assembled the villagers, asking them to bow to an idol and eat the flesh of a
pig, activities forbidden to Jews. The officer asked Mattathias, a Jewish High Priest, to
take part in the ceremony. He refused, and another villager stepped forward and offered to
do it instead. Mattathias became outraged, took out his sword and killed the man, then
killed the officer. His five sons and the other villagers then attacked and killed
the soldiers. Mattathias' family went into hiding in the nearby mountains, where many
other Jews who wanted to fight the Greeks joined them. They attacked the Greek
soldiers whenever possible.
Judah Maccabee and his soldiers went to the holy Temple, and were saddened that many
things were missing or broken, including the golden menorah. They cleaned and repaired
the Temple, and when they were finished, they decided to have a big dedication ceremony.
For the celebration, the Maccabees wanted to light the menorah. They looked everywhere
for oil, and found a small flask that contained only enough oil to light the menorah for
one day. Miraculously, the oil lasted for eight days. This gave them enough time to obtain
new oil to keep the menorah lit. Today Jews celebrate Hanukkah for eight days by
lighting candles in a menorah every night, thus commemorating the eight-day miracle.
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Christmas
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Christmas is the Christian celebration of the birth of Jesus Christ, the Son of God, and
the savior of all people. With the birth of Christ, Christianity essentially begins;
thus, Christmas also celebrates the beginning of Christianity.
Though Christmas is normally celebrated on the 25th of December, strong evidence suggests
that Jesus may have in fact been born in the spring. Though many Christians date
Christ's birth as the end of the "Before Christ" or BC era, most believe Christ's birth
can actually be dated to 4 BC. This is a bit ironic, since the Christian era is thought
to begin with the birth of Christ, but actually begins later.
Sextus Julius Africanus, a third century Christian missionary, is believed to have
first espoused the theory of Christ's birth as December 25th. This worked well when the
Romans later largely converted to Christianity because Christmas could be tied to pagan
winter rituals. Historical records suggest some forms of Christmas celebrations dating
back to the early 4th century CE. Some, however, argued that Christmas should not
be celebrated as a feast date, because of the divine nature of Christ. This position is
still held by some Christian groups like the Jehovah's Witnesses.
Most people see Jolly Old England as the source for many modern Christmas traditions,
however, England actually banned celebration of Christmas from 1647-1660 in an effort to
free the holiday of what was viewed as its pagan trappings and the excess and corruption
of the Roman Catholic Church. This was not a popular decision and England reinstated
Christmas as a celebratory holiday.
Charles Dickens inspired many of the traditions we now regularly practice as part of
Christmas celebrations. His phenomenal classic "The Christmas Carol" published
in 1843, changed Christmas to a moderate, family oriented holiday. This differed from
past celebrations which often verged on the anti-Christian, and which involved
pursuing hedonism with graceless abandon.
Clement Clarke Moore's 1822 poem "A Visit from Saint Nicholas" firmly established
the connection between Christmas and Santa Claus. Actually many Christmas traditions
are based in Germanic pagan rituals predating Christianity. Many consider Thor to be
a frontrunner as an early Santa Claus figure, and the Christmas tree was once a
sacrificial tree to the gods, hung brightly with dead animals.
Today, some people feel that Christmas has been corrupted by the commercialism with which
it has come to be associated. Still, many Christians feel that even a Christmas with
the overt trappings of commercialization has a special feeling that can only be attributed
to faith. It can be a time to renew one's faith, or merely come closer to the birth of
a religion which sustains many. In touching on Christ's message, even small children may
begin to understand the sacred nature of Christmas to Christians.
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Allergy Checklist For The Holidays
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Of the people we've surveyed, 71% report
suffering from allergies, 59% report having sensitivities to smells.
Those of us with FM and/or CFS/ME tend to be more sensitive to many odors and smells
than our healthy counterparts.
The following tips will help keep your holiday a healthier one.
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Tell people about any food allergies you have before menu planning begins. Even trace
amounts of an offending food can trigger a reaction.
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Dusting and vacuuming regularly minimizes dust mites, animal dander and other
allergens. Be sure the people you are visiting have vacuumed their upholstered furniture,
draperies and carpets before you arrive.
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Cleaning or replacing furnace air filters traps allergens better. Ask your host to
check their filters.
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If you are staying overnight, ask that your room is cleaned
thoroughly before you arrive, including washing sheets and pillowcases in hot water.
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Ask your host to keep the guest room door closed so the animals are not allowed in
your room. If necessary, have the animals confined to another area of the house, such as
the basement.
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Ask that your host limits the use of fragrant candles, potpourris and perfumes.
- Ash and smoke can trigger asthma and allergy issues. Ask smokers to
do so outdoors.
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Kwanzaa
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Kwanzaa is an African American and Pan-African holiday which celebrates family, community
and culture. Celebrated from 26 December thru 1 January, its origins are in the first
harvest celebrations of Africa from which it takes its name. The name Kwanzaa is derived
from the phrase "matunda ya kwanza" which means "first fruits" in Swahili, a widely
spoken African language.
The first-fruits celebrations are recorded in African history as far back as ancient Egypt
and Nubia and appear in ancient and modern times in other classical African civilizations
such as Ashantiland and Yorubaland. These celebrations are also found in ancient and
modern times among societies as large as empires (the Zulu or kingdoms (Swaziland) or
smaller societies and groups like the Matabele, Thonga and Lovedu, all of southeastern
Africa.
Kwanzaa was designed to be an ingathering to strengthen community and reaffirm common
identity, purpose and direction as a people and a world community. Kwanzaa
was also created to introduce and reinforce the Nguzo Saba (the Seven Principles.) These
seven communitarian African values are:
- Umoja (Unity)
- Kujichagulia (Self-Determination)
- Ujima (Collective Work and Responsibility)
- Ujamaa (Cooperative Economics)
- Nia (Purpose)
- Kuumba (Creativity)
- Imani (Faith)
It is important to note Kwanzaa is a cultural holiday, not a religious one,
thus available to and practiced by Africans of all religious faiths who come together based
on the rich, ancient and varied common ground of their Africanness.
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