Resources

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Find Help

Chronic pain can be devastating in many ways. U.S. Pain Foundation shares the following resources to assist you.shutterstock_280948142

Suicide Hotlines and Help for Veterans
Prescription Assistance Resources
Complementary Therapies
Social Security Resources
Workers’ Compensation
Suicide Hotlines and Resources

Are you in crisis?

If you are in crisis or considering harming yourself, we ask you to take one of the following steps immediately. Explain how you’re feeling. Remember part of being strong is acknowledging when to ask for help.

You Are Not Alone.

  • Call 911
  • Call a suicide/prevention crisis hotline
    (800-784-2433 or 800-273-8255)
    ◦  Assistance if you are deaf or hearing impaired? (800-799-4TTY)
    ◦  Para obtener asistencia en español, llame al (888-628-9454)
  • Veteran? Call 800-273-8255. Press “1” to reach the VA hotline
  • Go to a hospital emergency room

 

 

Stay Empowered

Dealing with pain affects every aspect of an individual’s life. For many suffering, the road to feeling validated is long and harrowing. It is easy to feel lost, defeated and isolated.

U.S. Pain Foundation believes that the pain community must become empowered along the healing journey. Empowerment leads to action. That is why it is the goal of the organization to provide members with resources that offer support and hope so you can become proactive as your own advocate.

Recommended Websites

Motivational Books
Keeping the Mind Busy By Exploring New Interests

Tools to Help You Move Forward


Youtube Videos

2016 INvisible Projects – In their own words…

2016 Pediatric Pain Camp Slideshow

 

Paul Gileno – In His Own Words

People With Pain Matter

In Their Own Words – INvisible Project Video

2015 Pediatric Pain Camp at The Center for Courageous Kids

Caregiver

P1820185 - EllenThe impact on our lives is much different now that we know it’s a disability. It’s the loss of dreams, the things we had hoped to do in retirement. But once you give that up, you can start looking for another life.”

-Stuart Smith
Director of Caregivers, U.S. Pain Foundation

For over six years, I have been my wife, Ellen’s, primary caregiver. Ellen suffers from two incurable conditions, which at times, have proven to be both disabling and life-threatening. Combining my personal experiences with outside knowledge on this topic, I have discovered __ insights on how to be an effective caregiver.

I know every situation is different, and that what I deal with on a daily basis may be the complete opposite from you. However, I am convinced that there are a number of common themes and concepts pertaining to all of us caregivers.

The most critical issue for a patient with a chronic medical condition may be acceptance of the inevitable changes that their medical condition has imposed upon them. Just as important, is for the caregiver to accept these same changes. Both of your lives have dramatically altered. I want to note that acceptance does not mean resignation or surrendering. Instead, it means facing the inevitable limitations. By, accepting the need for change, both you and your loved one can move forward more readily, exploring alternatives. This is not an easy feat, but without some form of acknowledgement, it becomes almost impossible to journey down this caregiving path without total anger, despair, and possibly, resentment.

Ellen and Stu, photo credit Ryan SmithEllen was forced to retire early, and I retired at the time of her diagnosis. All of the plans we had for retirement were immediately, and permanently, altered. Yet besides losing the career she loved, Ellen’s new physical limitations meant she could no longer participate in many of the activities she enjoyed like swimming (she was a master swimmer), gardening and, at times, even reading. To be an effective caregiver, you must find healthy ways to support your loved one during this emotionally trying period as the once unimaginable becomes a reality. Again, accepting these new limitations does not mean to surrender. I chose to see is as a “call to arms.”

The next barrier is finding relief. Unfortunately, despite the best treatment care, some patients may be unable to eliminate the majority of his or her pain. Formulating a new plan to manage pain with a variety of treatments (conventional and complementary) becomes crucial. Again, it is accepting the current state so you can move forward looking for new options that enable the one you care for to find meaning in life through productive activity and positive relationships.

Just as the patient needs to learn effective pain management tools, the caregiver must also learn to manage his or her emotions in such a way that he or she does not run the risk of becoming a victim of those very intense emotions that inevitably accompany the caregiving experience. Failing to develop mechanisms to cope with the stresses, fears and loss that accompany the role of caregiver can prove detrimental in your ability to remain effective in providing long-term support and care for an individual with a chronic condition.

Once Ellen and I were able to acknowledge (and accept) the changes in our lives, we then had to honestly examine our new roles and what we would have to undertake. Again, acceptance of the situation did not mean we surrendered. We chose to attempt to find productive activities to fill the void created by the comprehensive losses we had suffered.

Ellen_stu_tableThe very process of attempting to take such a personal tragedy and re-create one’s life into a new journey can in itself add to the emotional demands of both the patient and the involved caregiver. It is not simple or easy to redefine ones’ lifestyle and goals, especially when simultaneously confronting the process of aging in the latter stages of ones’ life with little independence and chronic, debilitating pain.

The support of an effective caregiver in maintaining realistic goals can be critical in this process. There will inevitably be obstacles, and some may prove impossible to overcome. The effective caregiver needs to be prepared to comfort, and then encourage the disheartened to continue along the journey but with a slightly different focus. It is imperative to constantly remind the one physically suffering that these setbacks are part of the process. But, also allow him or her a chance to grieve.

My wife’s new life eventually would include a modified exercise program. This not only boosted her morale, as physical activity was such a part of her old life, but also was important for the treatment of her condition. She and I then utilized skills we learned through our past work experiences to volunteer for a number of organizations, advocating and promoting non-conventional medical treatments. These new outlets gave our lives a new sense of purpose. For Ellen, this filled her need to engage in a meaningful activity, which was to empower those suffering to find some physical and psychological relief from their condition. In essence, we both redefined who we were as individuals and recreated a life that included pain, but centered on activism, hope and possibility. We connected on a new level, strengthening our bond and love.

With all that said, what is of the utmost importance for a caregiver is to not forget his or her own health needs and well-being. The natural focus during these times is on the patient’s health, but the physical and emotional health of YOU, the caregiver, cannot be overlooked. You must make yourself a priority. I suggest having a conversation with the one you care for about your need to attend to your personal interests – the activities you enjoyed before the onset of their illness or disability.

Becoming a martyr to your loved ones condition is not healthy or productive. In order to be the best caregiver you can be, you need to remember yourself. It is okay to enjoy a night out with friends, play a round of golf, laugh, go to the gym or even take a few hours to be alone. Find your own support system, and utilize their help. If a natural extended support system does not exist, create one.

Ellen has taught me a lot about living life to the fullest. Together, we face hurdles and challenges. This is not the life Ellen or I planned to be living right now, but it is the life we have been given … and together, we are adapting and making the best of it.

If you are struggling to care for someone, please view the help provided on the left. As the director of caregivers for U.S. Pain, I know the challenges and stresses you face. You are not alone, and if I can be of any assistance, contact me at: stu@uspainfoundation.org.

-Stu Smith

Helpful Articles

How Caregivers Can Take Care of Themselves (Cancer.Net)

Question for caregivers to help themselves  (Holly Whiteside, AgingCare.com)

How to Recognize, Avoid, and Prevent Caregiver Burnout (AgingCare.com)

3 Things the Chronically Ill Wish Their Love Ones Knew (Toni Bernhard, Psychology Today)

“Angry, Sad & Frustrated”– The Unspoken Feelings of a Caregiver  (Jim Stemple, The Pain Community)

A Not-To-Do List For Caregivers of the Chronically Ill: Six items that belong on a Not-To-Do List for an oft-forgotten group: caregivers (Toni Bernhard, Psychology Today)

How to Help Your Caregiver (Toni Bernhard, Psychology Today)

Caregiver Pathways: Stuart Smith, Caring For His Wife (PainPathways.org

Into the Limelight: Perspectives on Caregiving:An interview with Dana Reeve (Today’s Caregiver)

 

Online Resources

National Alliance for Caregiving

Family Caregiver Alliance

RobCares – caring for caregivers 

PainPathways Magazine – Caregiving Archive

Mindful Caregiving

Today’s Caregiver

Pediatric

Dealing with pain is hard for anyone. Yet when a child is afflicted, pain not only affects him or her, but also the entire family. As we know, pain is still poorly misunderstood and inadequately treated in adults. The lack of recognition and help is magnified tenfold when children are concerned. This results in a complex maze of navigating the medical system, the school system, and the everyday struggles of growing up.

The Coalition Against Pediatric Pain (TCAPP) is an organization committed to supporting and uniting families affected by pediatric pain, advocating for children in pain by increasing awareness of their needs, educating others regarding their long-term consequences of pediatric pain, funding research dedicated to pediatric pain conditions and providing sources to families and professionals.

Families of children affected by chronic neuropathic pain diseases founded TCAPP. All of the founding families children suffer from RSD/CRPS as well as multiple pain conditions such as EDS, dysautonomia, migraines and painful GI issues.

U.S. Pain Foundation is proud to team up with TCAPP, supporting its mission and cause to help children living with pain as well their families. It continues to be our goal to fund various projects of the Coalition and share this vital resource with others.

If you are a parent or loved one of a child living with chronic pain, we encourage you to visit The Coalition Against Pediatric Pain.

You are not alone in this journey

Parental Support

The Coalition Against Pediatric Pain (TCAPP)

Casey Cares

Healthy Children

Stop Childhood Pain

The Center For Courageous Kids

Pediatric Angel Network

 

Pediatric Support

The Sick Chicks

Crazy Sock Day

Sweet Lemon Pies Blog

 

Pediatric Events

Crazy Sock Day – January 24

Take Control Of Your Pain – Date TBD

Pediatric Pain and Family Week (Center for Courageous Kids – Pain Camp) – July 25-29

Complementary Therapies

There are so many therapies that have the potential to lower our pain or help us find balance and stability in the midst of chaos and pain. Here is a list of some complementary therapies that may be worth looking into.

Again, U.S. Pain Foundation does not endorse one type of treatment. As an organization, we support all therapies that can provide the 100 million Americans living with pain answers and relief.

To heal does not necessarily mean to cure. It can simply mean helping people to achieve a way of life compatible with their aspirations—to restore their freedom to make choices—even in the presence of continuing disease.

Rene Dubos


The Many Different Approaches to Treating Pain

Active Release Technique
Acupuncture
Acupressure/ Deep Tissue Release
Art Therapy
Aura Imaging
Bach Flowers
Biofeedback
Breath Work
Chakra Alignment
Chiropractic Work
Colonics
Color Therapy
Craniosacral Massage
Crystal Therapy
Dance Therapy
Dietary Changes
Exercise
Energy (Body) Work
Feldenkrais
Feng Shui
Guided Imagery
Heat Therapy
Healing Touch
Herb and Mineral Use
Hot Mineral Springs
Hypnosis
Laser Therapy
Light Therapy
Magnets
Massage Therapy
Meditation, Mindfulness and Relaxation Techniques
Messages from the Body work
Music Therapy
Physical and Occupational Therapy
Psychotherapy
Reflexology
Reiki
Spiritual Response Therapy
Steam Room
St. John’s Neuromuscular Massage Therapy
T’ai Chi Chih
Upper Cervical Spine care
Visualization Therapy
Water Therapy
Yoga

Medical Marijuana

U.S. Pain supports all avenues for individuals to obtain pain relief. Without effective pain management, many living with pain lose hope as well as a sense of meaning. It is therefore the mission of the foundation to share credible information with you that is solely directed at improving pain management.

U.S. Pain understands medicinal cannabis is a hot-topic issue. While it is not legalized in all states, momentum is growing to make cannabis a legitimate tool in the fight for relief against many chronic pain conditions. U.S. Pain supports these efforts – and with the help of our Advocacy Directors of Medicinal Cannabis, Ellen and Stu Smith – have compiled resources to educate you on this valuable option to control pain.

 

Do you know where your state stands? 

Presently, the following state have legalized medical cannabis:

Alaska

Arizona

California

Colorado

Connecticut

Delaware

District of Columbia

Hawaii

Illinois

Maine

Maryland

Massachusetts

Michigan

Minnesota

Montana

Nevada

New Hampshire

New Jersey

New Mexico

New York

Ohio

Oregon

Pennsylvania

Rhode Island

Vermont

Washington

To check the status of your state: http://norml.org/legal/medical-marijuana-2

How to Help your State Approve Medical Cannabis
Research
Why I Turned to Medicinal Cannabis