American Chronic Pain Association
Winter 2019
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Preparing and Recovering for the Holidays
We have all been there, rushing around, trying our best to get everything done before that special time of the year arrives. There is shopping to do, houses to clean and get ready, guests to accommodate, food to prepare and many plans to complete. Once the celebration is over, the guests are gone, and the food is put away and there is the cleanup. . . lots of cleanup. How do we get it all done without increased stress and pain?
We all start out telling ourselves that this year will be different. This year we will stay on budget, not wait till the last minute, not overdue, stick with our diet, keep up with our exercise program and get plenty of rest. But somewhere along the line, things seem to fall apart. Perhaps it is the one meal that was just too good to pass up and you told yourself you would go right back on your diet tomorrow . . . unfortunately, tomorrow never comes. Or you waited till the last minute to decorate the house and find yourself pushing beyond your limits to finish; or find it impossible to finish and beat yourself up because you waited too long and now your pain is making it impossible to accomplish anything.
Perhaps you overestimated your ability to host the relatives or friends for the weekend and find that the simplest thing like keeping up with the laundry to make sure there's always clean towels is more than you can do. And the gift list is getting larger and more expensive each day because you want to make sure your family know how much you care or perhaps want to impress your friends with that perfect gift that shows how important they are to you. All your careful planning seems to be slipping through your fingers as the season inches closer and closer. And your ability to keep up with everything and everyone is gone. You ask yourself; how did this happen?
You know how it happened. You didn’t stick to your plan, you wanted to please those you care about and most importantly, you didn’t listen to your body. When you felt that first “ouch” you told yourself you could go on, rest would come later when the job was done. Then another “ouch” this time a little more intense and lasting longer than you would have liked, but you are so close to getting done, so you push. It never occurred to you or you simply forgot that if you stop, rest for thirty minutes, you can go back to the task and finish, maybe even better than if you had pushed yourself.
As the holidays draw near, here are some things you might want to keep in mind to help you get through all the tasks needed to provide for the perfect holiday and still have the ability to enjoy the moments:
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SHOPPING
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Set a budget for how much you are going to spend for the holidays. Take that money and get a credit card with just that amount on it. Leave all your other credit cards at home. Just take a small amount of cash with you for food and small items. That way you cannot overspend what you don’t have. But you must leave your other credit cards at home!
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When shopping, break it down into 30 minute or one-hour increments. Set your watch or alarm on your cell phone as a reminder. When your time is up, find a place to rest. It can be sitting down to have a coffee
or tea, you can simply go to your car and rest for fifteen minutes. Then, if you want, go back and shop for another hour.
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Take a friend with you to help carry your bags if you plan on doing a lot of shopping. Or rent a strollers that many of the malls have available to put your packages in.
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In some malls they offer free gift wrapping, take them up on it. You can leave your package there and pick up your packages when you are done shopping, saving yourself an extra step of wrapping your gifts. It also helps with having to carry too many packages at one time.
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Cooking
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Plan your meals ahead. There are many dishes that can be made a week or so in advance and frozen. That way all you have to do is reheat. When you have guest, it is a lot easier to heat the meal than start from scratch. That way you have more time to spend with your guest and the clean up is easier; you don’t have all the pots and pans you needed to cook the dish.
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There some really pretty paper plate available for the holidays. Think about using them for one or two of your meals to save on dishes.
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If you are entertaining lots of people for dinner, have a potluck. Ask each person to bring a main dish to share with however many people will be joining you. You can supply the beverages and place settings.
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Rather than have friends over for dinner, you can have a coffee and cookie exchange. Most people bake around the holidays. Ask each one to bring however many people with be joining you, say you have six people in total, ask then to bring six dozen of their favorite cookie. At the end of the evening, each person will go home with six dozen cookies, but they will be six dozen different types of cookies.
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Many grocery stores offer ready made meals. Take advance when planning meals.
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The new service offered by many food chains if delivering groceries for free if you spend a certain amount. During the holidays, that is not hard to do, so check out the nearby stores and see who offers the best deal. It will save you loading and unloading the food in your car. Have it delivered right to your door!
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If you can afford it, have your dinner catered. Just plan ahead so that you can get the caterer and perfect menu that you want.
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Cleaning and Decorating
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It is this time of year when you want your home to look its best. Before you start, do a few stretching to loosen up, it will help.
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Start early so you can take your time and not have to rush.
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Do one small area in a room or plan on just doing the dusting one day, and the vacuuming the next. Finish up with other things the next day.
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You can ask for help, that is one of your basic rights. You can ask for help from family and friends to help lift or move heavy things. Putting up holiday decoration is a big job, so make sure you have help. And don’t forget to ask for help when taking them down and storing them.
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You can ask those who live with you to take responsibility for their things, pick them up, clean their room and even do their own laundry.
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Not every room in your house will be seen during the holidays. That can limit the amount of cleaning you need to do.
The important thing this holiday season is to make sure you take time to enjoy the season. Listen to your body, know that nothing is perfect so give yourself some slack. The holidays are not about the presents, the amount of decorations you have, but about being with friends and family to enjoy each other company. That is free and takes no effort at all. Make sure you have the time and energy to enjoy the holidays.
From everyone at the American Chronic Pain Association, Happy Holidays!
Please note the ACPA National Office will be closed
Dec 23, 2019- Jan 5, 2020
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Acting Commissioner of Food and Drugs
Food and Drug Administration
Norman E. "Ned" Sharpless MD
Addressing opioid overdose continues to be one of the most urgent public health priorities for the U.S. government and making potentially lifesaving treatments more readily available is one of the top ways we can address this crisis. As we observe Prescription Opioid and Heroin Epidemic Awareness Week, a time when we acknowledge the devastating toll the opioid crisis has inflicted on our country, we felt it was essential to clarify important information about Naloxone, an emergency opioid overdose reversal treatment. Naloxone is a critical tool for individuals, families, First Responders and communities to help reduce opioid overdose deaths.
Access to Naloxone, however, continues to be limited in some communities. There are three FDA-approved forms of Naloxone – injectable, auto-injector and nasal spray – and all three currently require a prescription, which can be a barrier for people who aren’t under the care of a health care provider or who are apprehensive about admitting to issues with substance abuse. However, in response to the crisis, most states and the District of Columbia have passed laws that allow pharmacists to dispense Naloxone under a standing order, which takes the place of an individual prescription. Some states also have given pharmacists direct authority to prescribe and sell Naloxone to consumers. Still, many pharmacists may be unaware of the standing orders and direct authority in their states or are unwilling to provide all forms of Naloxone to consumers without an individual prescription.
There is also a persistent misunderstanding that the FDA-approved labeling for the injectable form of Naloxone, the least expensive option, precludes administration outside a health care setting. This has created confusion among public health officials and community-based organizations about whether the injectable form of Naloxone can be used as part of their distribution programs. The FDA-approved product labeling for the three forms of Naloxone does not exclude dispensing by pharmacies or community distribution programs. All three forms of Naloxone are FDA-approved and may be considered as options for community distribution and use by individuals with or without medical training to stop or reverse the effects of an opioid overdose.
The FDA is working with other federal, state and local officials as well as health care providers, patients and communities across the country to increase availability of all forms of Naloxone and combat the toll to communities, individuals and the economy resulting from opioid abuse and addiction. As we continue to confront the opioid crisis, several efforts are underway at the FDA to make Naloxone more readily available and accessible.
In April, we approved the
first generic Naloxone Hydrochloride nasal spray
, a generic of the brand product, Narcan. The FDA is also granting priority review to all generic applications for products that can be used as emergency treatment of known or suspected opioid overdose. As part of the priority review, sponsors will receive shorter goal dates or standard goal dates with earlier reviewer deadlines; enhanced agency communication with sponsors; and expanded agency engagement, such as pre-submission and mid-cycle meetings, making Naloxone more widely available in every pharmacy as an approved over-the-counter (OTC) product would also be an important public health advancement – one we have been working on at the FDA.
In January, we took an unprecedented step in helping to encourage development of
OTC Naloxone products
. To encourage drug companies to enter the OTC market, the FDA designed, tested and validated the key labeling requirements necessary to approve an OTC version of Naloxone. To do this, we developed a model Drug Facts label (DFL) with pictogram instructions so anyone with access to the drug can better understand how to administer it. To ensure the pictograms are easy to understand, we also conducted label comprehension testing with consumers. This was the first time the FDA proactively developed and tested a DFL to support development of an OTC product. With one of the key components for OTC availability now in place, drug companies can use this information as part of an application to obtain approval for OTC Naloxone. We are continuing to work with industry partners who are interested in developing these OTC Naloxone products.
The FDA also held a
public meeting
in December 2018 on various options for increasing access to Naloxone, weighing logistical, social and economic aspects of this important issue. There was overwhelming support from meeting participants to remove barriers to obtaining Naloxone, particularly OTC Naloxone, and to support community activities that expand its availability. As a result, we are currently exploring more ways to increase the availability of all forms of Naloxone, such as working with manufacturers to see if shelf-life extensions for Naloxone products are possible; conducting additional research on Naloxone; and considering situations where co-prescribing of Naloxone may be appropriate including possible updated product labeling.
The U.S. Department of Health and Human Services has ongoing efforts to fight the opioid crisis and expand the use of Naloxone. In April 2017, the department announced a
5-Point Strategy
to Combat the Opioids Crisis, including better targeting of overdose reversing drugs. In April 2018, Surgeon General VADM Jerome Adams issued an
advisory
encouraging more individuals, including family, friends and those who are personally at risk for an opioid overdose to carry Naloxone. In December 2018, Adm. Brett Giroir, M.D., Assistant Secretary for Health and the Secretary’s Senior Advisor for Opioid Policy, released
guidance
for health care professionals and patients detailing how Naloxone can help save lives. Ultimately, the goal of increasing access to all forms of Naloxone is to make this potentially life-saving treatment available to individuals at risk of an overdose – such as those with a history of overdose or substance use disorder – and those in the community most likely to observe an overdose. The FDA remains committed to using its regulatory authority to address this crisis, working with all our partners to expand the availability of all forms of Naloxone, and encouraging prescribers and patients to discuss this topic. All together, these efforts have the potential to put a vital tool for combating opioid overdose in the hands of those who need it most – friends and family of opioid users, as well as First Responders and community-based organizations.
The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.
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Performing Arts Center of New Jersey
Welcomes ACPA Regional Director Pat Hubert
To promote Pain Awareness this September Patricia Hubert, DNP, visited the staff at NJ Performing Arts Center on September 18, joining their Wellness Team at their monthly staff meeting.
The topic:
What is Pain and What can we do about it?
The purpose was to spread awareness of chronic pain, help staff prevent persistent pain and know what to do should this develop. Patricia has been a facilitator for the American Chronic Pain Association (ACPA) for 10 years and Regional Director of New Jersey. As a nurse practitioner, nurse educator and a person dealing with chronic pain she provides education and support to persons in chronic pain and their families because it is common to feel alone, isolated, and overwhelmed by daily activities. It is a struggle to meet daily challenges. Members help each other and learn how to better cope with their pain.
Some of the points Pat made in her presentation:
- An equal opportunity afflicter
- Infancy thru old age and while more common as we age,
not a disease of aging
- Very REAL !
- Different for everyone
- Very PERSONAL--no one else can feel it
- Or see it– INVISIBLE
- Raw—it stings, bites, burns, pulls, stabs, aches
- Variable
- Can be constant or intermittent
- Unpredictable—intensity varies
- Demanding—gets one’s full attention!
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Lauren Vivenzio.,Wellness Director at NJ PAC
Pat Hubert, ACPA Regional Director NJ
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Focused on You: ACPA and PCORI Research
PCORI, the Patient-Centered Outcomes Research Institute, was established as part of the Affordable Care Act (Obama care). Its focus is on bringing clinicians and the person with pain or other condition onto the research team to help shape studies---and eventually care---to be more responsive to real-world needs and therefore improve outcomes.
According to the PCORI web site, " In PCORI-funded research, patients and other
healthcare stakeholders
are equitable partners—as opposed to research subjects—who leverage their lived experience and expertise to influence research to be more patient centered, relevant, and useful."
Since the beginning, ACPA members have served as stakeholders and advocates on numerous PCORI projects focused on pain. We have helped to ensure that the research addresses real needs and treats participants with respect and in ways appropriate to their conditions. "I highly value having stakeholders such as patients, clinicians, and patient advocates on my research team," said Carol M. Greco, PhD, leader of one such study. "They bring unique perspectives and also skills. Stakeholders’ input improves the products we create for clinics. Having stakeholders as research partners keeps the team focused on what is truly most important: the patients’ experience."
This year, the PCORI annual meeting, held September 18 through 20 in Washington, DC, focused on the implementation of research findings in the clinic, providers' offices, and in policy. PCORI is unique in providing grants to enable researchers to bring their findings to the real world.
"Too often, it takes years for useful new findings from clinical research to be taken up in practice and to influence health care" notes a PCORI publication. "And typically, research results are not presented in formats or language that patients and their caregivers can easily understand. . . . We’re working to ensure that findings are easily accessible and useful to those who need them to make informed decisions about care. Our dissemination and implementation efforts heighten awareness of study results and advance efforts to put these findings into practice to improve healthcare delivery and health outcomes."
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"It was inspiring to see the impact stakeholders have had on the research presented at the meeting," said one attendee. "Their awareness of the financial, social, and psychological impact of their conditions sharpened the focus of the implementations proposed and helped to ensure that the research would make a real difference."
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ABOUT PCORI
Our Vision
Patients and the public have information they can use to make decisions that reflect their desired health outcomes.
Our Mission
PCORI helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community.
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StandUp2OA
Today, 32.5 million Americans – nearly 1 in 7 adults – have osteoarthritis (OA), the most common form of arthritis and a leading cause of disability. OA mainly affects joints in the hands, knees, and hips in adults which can limit daily activities such as climbing stairs, kneeling, or stooping. Disability among working-aged adults leads to an estimated annual $71.3 billion in lost work earnings. Unfortunately, OA rates are significantly increasing and are expected to continue to do so in the next two decades as Baby Boomers age and the effects of the obesity epidemic continue to rise.
In response to this growing public health epidemic the Osteoarthritis Action Alliance (OAAA) launched a comprehensive campaign –
StandUp2OA
-- focused on osteoarthritis awareness and prevention. While there is no cure for OA, people with arthritis can reduce their symptoms by up to 40% by learning how to manage their condition and engaging in physical activity.
The updated Physical Activity Guidelines encourage adults to get at least 150 minutes of moderate-intensity physical activity per week and at least 2 days of muscle strengthening activities. "Moderate intensity" includes physical activities that are intense enough that you can still talk, but not sing. Examples include brisk walking, biking, hiking, or swimming.
While 150 minutes a week is the recommendation, researchers have found that for adults with lower extremity OA, as little as 45 minutes of moderate-to-vigorous activity per week is enough to improve or maintain function. For everyone, the most important message is to keep moving! (Always consult your doctor before you begin any new exercise program.)
Physical activity can help release naturally occurring pain-reducing chemicals, as well as activate pain-reducing mechanisms within the body. Walking is a simple, inexpensive, and effective way to be physically active that builds strength, reduces pain, and improves mood. Whether you walk or choose a different type of activity, starting small with just 5 minutes a day and building up is an easy and safe way to begin moving more. Self-management education workshops in your local community can provide more hands-on guidance on managing osteoarthritis and reducing pain, fatigue, and depression by 10% to 20%.
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Fortunately, even activities that don’t feel like exercise contribute toward your daily activity goals.
What counts?
- Yardwork or housework
- Walking your dog
- Gardening
- Playing catch with your kids
- Dance party
Learn how you can StandUp2OA!
Go to www.standup2oa.org for information about how to raise awareness and take action whether you are an adult with OA, business leader, public official, community organization leader, or a healthcare provider.
You can share your story or spread the message using #StandUp2OA on social media. You can also subscribe to the StandUp2OA
newsletter
to stay in the loop about the campaign.
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“The Purple Butterfly”
By: Deb Bradt, RYT
(dedicated to those who struggle with pain & in loving memory of Lisa & Maureen)
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Listless and beaten down,
Worn and weary
Shattered-
Locked in a vice grip,
Unable to move
Or take a breath…
So different,
So alone,
Misunderstood~
Cannot escape…
The poking and prodding,
Disapproval
And doubt,
Intense pressure-
Empty promises,
Disappointments-
Enduring bumpy roads,
Holding on tightly,
Writhing and restless,
Nowhere to turn~
So much confusion,
Chaos
Contracted muscles,
Insides churning,
Burning hot-
Collapsing into
The abyss…
Where am I?
Who am I?
Pause…
Catch a glimpse of
Aqua blue sky,
Spacious and inviting-
Feel Earth Mother
Beneath my feet,
A gentle breeze
Caressing
Weakened bones
And tired muscles,
Inviting me to soften...
Sense Spirit
Cloaking,
Cradling
Holding me,
A warmth so sweet
Its’ nourishment
Pulsing through like nectar-
Penetrating deep wounds,
Gripping scar tissue
Inflammation,
Cooling years of heartache,
Melting through regrets…
Sense my eyes,
Chocolatey brown
With flecks of gold,
Echoes of my father~
Tears swelling,
Falling gently
Caressing the beauty mark
On my left cheek,
The mark of my ancestry,
That twinkles when I smile…
Sense my skin,
Delicate and soft,
Chestnut hair flowing
In the light breeze,
Tendrilled curls
Cascading,
Like a halo,
Around my shoulders…
Sense my core,
Womb energy-
Unraveling
A gentle rocking inside,
Melting amidst the trees.
Feel steadiness beneath my feet
Toes dancing on the
Plushness of green grass…
Feel my son,
His sparking smile,
Playfulness
Hugging me
From the inside…
Feel the rush-
Unwavering love of
My husband,
His emerald eyes
Filling up the hollowness…
For my life…this life…
Is not over…
I choose to live-
To stand up for who I am
To reclaim my dignity-
To welcome this journey
And let my inner yearnings
Finally awaken…
As a woman-
As a mother-
As a wife-
I am enough…
I am the Purple Butterfly~
Fluid and Free,
And, even with broken wings,
I will fly again.
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NEW - ACPA Support Groups:
Elizabeth Palmer - Winter Garden FL
Debra Kempker - Sutter Creek CA
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Gifts given to the ACPA
In Loving memory:
Ralph Cole
Given by Deborah Cleveland
In Loving Memory:
Joe Scheider
Given by Cookie & Ed Feinglass
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Fall 2019 Combined Federal Campaign (CFC)
Consider directing your donation to the American Chronic Pain Association this year.
CFC Code number is:
10549
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You shop.
Amazon gives.
Shopping on line helps the American Chronic Pain Association
If you use Amazon for your on-line shopping, you can now support the ACPA. It is simple just go to AmazonSmile and select American Chronic Pain Association as your charity from the drop down menu.
- Amazon donates 0.5% of the same price of your eligible AmazonSmile purchases to the charitable organization of your choice.
- AmazonSmile is the same Amazon you know. Same products, same prices, same service.
- Support American Chronic Pain Association by starting your shopping at smile.amazon.com
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