Invisible Illness Week Joins American Pain Foundation to Endorse the Virtual March on Washington

September is Pain Awareness Month. Pain affects more Americans than diabetes, heart disease and cancer combined, and is a leading cause of disability in the United States. Yet, it remains woefully undertreated and misunderstood, resulting in needless suffering .

This September, the National Invisible Chronic Illness Awareness Week campaign is joining with the American Pain Foundation to endorse the Virtual March on Washington to raise awareness about the barriers to accessing appropriate and effective pain management and the desperate need to improve pain care for all Americans.

Go to www.painfoundation.org/virtualmarch to participate in the march.

Opportunities to engage include:  writing your legislator, watching condition specific videos, chatting with others affected by pain and adding your voice to the 10,000 Voices campaign. You can also use resources in the PAM Advocacy Toolkit to host an event in your local community or get tips and templates for writing a letter to the editor. Go to www.APFActionNetwork.org to see how. Tell YOUR story. Join us to create change!

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Our Favorite Resources! Associations, Foundations, and More!

This is a list we put together with some of our favorite organizations. If you have one you would like added, leave a comment below and we will update the list soon.

(This collection of links is copyrighted. Please don’t copy and paste it to your web site.)

• Advocacy for Neuroacanthocytosis Patients http://www.naadvocacy.org/
• Advocacy for Patients with Chronic Illness, Inc http://www.advocacyforpatients.org/
• Agency for Healthcare Research and Quality www.ahrq.gov
• Alliance of State Pain Initiatives http://www.aspi.wisc.edu
• American Academy of Hospice and Palliative Medicine http://www.aahpm.org
• American Academy of Orthopaedic Surgeons http://www.aaos.org
• American Academy of Pain Management http://www.aapainmanage.org
• American Academy of Pain Medicine http://www.painmed.org
• American Arthritis Society http://www.americanarthritis.org
• American Autoimmune Related Diseases Association http://AARDA.org
• American Behcet’s Disease Association http://behcets.com
• American Cancer Society http://www.cancer.org/docroot/home/index.asp
• American Celiac Society http://www.williamshaffer.org/acs/about.htm
• American Chronic Pain Association http://www.theacpa.org
• American College of Physicians http://www.acofp.org
• American College of Rheumatology http://www.rheumatology.org
• American Diabetes Association http://www.diabetes.org
• American Fibromyalgia Syndrome Association http://www.afsafund.org
• American Geriatrics Society http://www.americangeriatricssociety.org
• American Headache Society http://americanheadachesociety.org
• American Lyme Disease Foundation http://www.aldf.com
• American Medical Association http://www.ama-assn.org
• American Osteopathic Association http://www.do-online.org
• American Pain Foundation http://www.painfoundation.org
• American Pain Society http://www.ampainsoc.org
• American Society of Anesthesiologists http://www.asahq.org
• American Society of Interventional Pain Physicians http://www.asipp.org
• American Society of Law, Medicine and Ethics http://www.aslme.org
• American Society of Physical Medicine and Rehabilitation http://www.aapmr.org
• American Society of Regional Pain Management http://www.asra.com
• Amputee Coalition of America http://www.amputee-coalition.org
• Arthritis Foundation http://www.arthritis.org
• Association of Gastrointestinal Motility Disorders, Inc.http://www.agmd-gimotility.org/
• Association of Oncology Social Work http://www.aosw.org
• Autoimmune Information Network http://www.aininc.org
• BAMS http://www.bandagainstms.org
• Band Against MS-Clay Walker http://www.bandagainstms.org
• Band-Aids and Blackboards http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/
• Beyond Chronic Pain http://www.beyondchronicpain.com
• Board Certified.com directory of those board certified physicians who wish to present an elevated Internet presence to the patient community http://Board Certified.com
• Bridge Medical http://mederrors.com
• But You Don’t Look Sick http://butyoudontlooksick.com
• Caring Bridge http://caringbridge.org
• C-Cange (cancer focus) http://www.c-changetogether.org
• CFIDs Association of American http://www.cfids.org/
• Celiac Sprue Association http://csaceliacs.org
• Centers for Disease Control and Preventionhttp://www.cdc.gov
• Center for Medical Consumerswww.medicalconsumers.org
• Chron’s Adventure http://CrohnsAdventures.org
• ChronicBabe http://chronicababe.com
• Citizens for Patient Safety http://citizensforpatientsafety.org/
• Compassionate Friends – coping with death of child http://compassionatefriends.org
• Conquering Chiari http://www.conquerchiari.org
• ConsumerLab http://ConsumerLab.com
• Consumer Health Information Corporationwww.consumer-health.com
• Consumers Advancing Patient Safety (CAPS) www.patientsafety.org
• Empowered Patient Coalition http://empoweredpatientcoalition.org
• Diabetic Mommy http://www.diabeticmommy.com
• DiagKNOWsis http://www.diagknowsis.org/
• Digestive Disease National Coalition http://www.ddnc.org
• Disabled American Veterans http://www.dav.org
• Dysautonomia Foundation http://www.familialdysautonomia.org
• Dysautonomia Information Network http://www.dinet.org
• Dystonia Medical Research Foundation http://www.dystonia-foundation.org
  
• Ehler-Danlos National Foundation (connective tissue disorder) http://www.ednf.org
• Every Patient’s Advocate – Trisha Torrey http://healthcarespeaker.org/
• Facial Pain Association http://fpa-support.org
• Fibromyalgia http://www.fmaware.org
• For Grace http://www.forgrace.org – Reflex Sympathetic Dystrophy
• Healing Well http://healingwell.com
• Health & Disability Advocates http://hdadvocates.org
• Health Grades http://www.healthgrades.com
• Hereditary Neuropathy with liability to Pressure Palsies http://www.hnpp.org
• Hospice Patients Alliancehttp://hospicepatients.org
• Hospice Foundation of America http://www.hospicefoundation.org
• IDEAS Kids – Intestinal Diseases http://ideaskids.com
• IDF: Immune Deficiency Foundation, www.primaryimmune.org
• IG Living Magazine – Immune Gobulin http://www.igliving.com
• Institute for Safe Medication Practices http://www.ismp.org/
• Intercultural Cancer Council http://www.iccnetowork.org
• International Association for Hospice and Palliative Care http://www.hospicecare.com
• International Association for the Study of Pain http://www.iasp-pain.org
• International Foundation for Functional Gastrointestinal Disorders (IBS) http://www.aboutibs.org
• International Stills Disease Foundation http://stillsdisease.org
• InvisABLE Illness http://www.invisableillness.com/
• Invisible Disabilities Association http://ida.org
• Joni and Friends http://joniandfriends.org
• Lance Armstrong Foundation http://www.livestrong.org
• Life Without Limbs http://lifewithoutlimbs.org
• Lung Cancer Alliance http://www.lungcanceralliance.org
• Lung Transplant Foundation http://lungtransplantfoundation.org
• Lupus Foundation of America, Inc. http://www.lupus.org
• Magic Foundation www.magicfoundation.org
• Maryland Pain Initiative http://www.marylandpaininitiative.org
• Mayo Clinoic http://www.mayoclinic.com
• Mastocytosis Society http://www.tmsforacure.org/
• Medically Induced Trauma Support Services (MITSS) www.mitss.org
• Medicarehttp://www.medicare.gov/
• Medline Plus Health Informationhttp://medlineplus.gov/
• Medscape http://www.medscape.com/home
• Medwatch – the FDA Safety Information and Adverse Event Reporting Program http://www.fda.gov/medwatch/index.html
• Mental Health Ministries www.MentalHealthMinistries.net.
• Myasthenia Gravis Foundation of America http://www.myasthenia.org
• Mastocytosis Society www.tmsforacure.org
• National Alliance for Mental Illness http://nami.org
• National Coalition for Cancer Survivorship http://www.canceradvocacy.org
• National Comprehensive Cancer Network http://www.nccn.org
• National Family Caregivers Association http://www.nfcacares.org
• National Fibromyalgia Association http://www.fmaware.org
• National Headache Association http://www.headaches.org
• National Hospice and Palliative Care Organization http://www.nhpco.org
• National Institutes of Allergy and Infectious Diseases (NIAID) http://www3.niaid.nih.gov/topics/lymeDisease
• National Institute of Arthritis and Metabolic Diseases (NIAMD) http://www.niams.nih.gov
• National Institutes of Health (NIH)http://health.nih.gov/
• National Invisible Chronic Illness Awareness Week http://InvisibleIllnessWeek.com
• National Kidney Foundation http://www.kidney.org
• National Multiple Sclerosis Society http://www.nationalmssociety.org
• National Necrotizing Fasciitis Foundation http://www.nnff.org
• National Organization for Rare Disorders http://www.rarediseases.org
• National Ovarian Cancer Coalition http://www.ovarian.org
• National Pain Foundation http://www.nationalpainfoundation.org
• National Patient Advocate Foundation http://www.npaf.org
• National Prostate Cancer Coalition http://www.fightprostatecancer.org
• National Stroke Association http://www.stroke.org
• National Vulvodynia Association http://www.nva.org
• National Women’s Health Resource Center http://www.healthywomen.org
• Pain.com-for professionals and patients http://www.pain.com
• PainPathways.org http://www.painpathways.org
• Pain Relief Network http://painreliefnetwork.org
• PAINWeek http://www.painweek.org/
• Pancreatic Cancer Action Network http://www.pancan.org
• Partners Against Pain http://www.partnersagainstpain.com
• Patient Advocate Foundation http://www.patientadvocate.org
• Patients Like Me http://patientslikeme.com
• Pharmacy Checker http://PharmacyChecker.com
• Power of Pain Foundation http://www.powerofpain.org
• Power Over Your Pain http://www.poweroveryourpain.com
• Prevent Cancer Council http://www.preventcancer.org
• PSC Partners Seeking a Cure http://www.pscpartners.org/
• QuackWatch http://www.quackwatch.org
• Race Against Pain http://www.RaceAgainstPain.com
• Reflex Sympathetic Dystrophy Syndrome Association http://www.rsds.org
• Rest Ministries Chronic Illness Pain Support http://restministries.com
• Saracoma Foundation of America http://www.curesarcoma.org
• Sceptor Pain Foundation http://www.sceptor.org
• Scleroderma Foundation http://www.scleroderma.org/
• Sickel Cell Disease http://www.sicklecelldisease.org
• Spondylitis Association of America http://www.spondylitis.org/
• Susan G. Komen for the Cure http://www.komen.org
• Texas Pain Society http://texaspain.org
• The Leukemia & Lymphoma Society http://www.leukemia-lymphoma.org
• The National Foundation for the Treatment of Pain http://www.paincare.org
• The National Migraine Association http://www.migranes.org
• The National Pain Foundation http://www.nationalpainfoundation.org
• The Prostate Net http://www.prostate-online.org
• United Spinal Association http://www.unitedspinal.org/
• United States Bone and Joint Decade http://www.usbjd.org
• Voice 4 Patients information and resources for those who have been victimized by healthcare error http://www.voice4patients.com/
• WEGO Health Activists http://community.wegohealth.com/
• Wilson’s Disease Association http://www.wilsonsdisease.org/
• World Institute of Pain http://www.worldinstituteofpain.org

INTERNATIONAL________________

• Asociacion Argentina para el Estudio del Dolor http://www.aaedolor.org.ar
• Associazione Italiana per lo Studio del Dolore http://www.aisd.it
• Australian Pain Society http://www.apsoc.org.au/interest.html
• British Pain Society http://www.britishpainsociety.org/
• Canadian Pain Society http://www.canadianpaincoalition.ca
• Egyptian Pain Society http://www.egyptianpainsociety.org
• European Federation of IASP Chapters http://www.efic.org
• Turkish Society of Algology http://www.algoloji.org.tr

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Sept is Pain Awareness Month

With our focus and planning for Invisible Illness Week we sometimes forget to mention that September is also Pain Awareness Month.

You will wnat to take a few minutes to go by the web site of American Pain Foundation and see all the exciting things they are offering such as a the launch of the Conquering Pain Together project and a a five-episode, Web-based series called the Let’s Talk Pain Show

Pain Community News is APF’s quarterly newsletter and is always full of information you should know about. Now, Pain Community News is available as an e-publication, so readers can just virtually flip through its pages.

Their web site states:

The fall issue of the newsletter is chock full of inspiring stories and helpful information including the creative and tireless efforts of advocates honoring Pain Awareness Month, 10 things you can still do to help make a difference in September, pains not to ignore, easing immunization pain, fast facts on acute back pain and much more! To receive print copies of Pain Community News in the future, please be sure we have your mailing address by registering as an APF member. Remember to encourage friends, family, colleagues and neighbors to join too – there is power in numbers, let’s work together to improve pain care in America.

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Making Your Pain Doctor A Partner

I saw my Pain Management Doctor last week for my chronic illness. It is time for a medication change due to my ever-increasing pain. I don’t take medication changes lightly; the process can be particularly non-pleasant at times, depending on what you are doing with the change. This decision has been awhile coming, right alongside the pain that just keeps coming. My choices are few. I need a partner to help me with this.

Enter the kindest, most professional, (without being like a robot), empathetic, with an ‘I want so much to know what you feel when you tell me of your pain’ look in the eyes; Pain Management Doctor. It was time to get down to business as we began. We consistently have a nice time together; we talk well. You know ‘those’ kinds of doctors?? I was married to one, {gasp} and feel that he is such a kind, caring, thorough and empathetic doctor, whose patients just adore him.

We’d get the most wonderful gifts at Christmastime; mmmm fresh Persimmon cookies from one lovely patient–every year like clockwork, I was faced with a huge tin of the best cookies I have ever tasted, and what is a girl supposed to do?? Admire them? Ahhh NO, I made great use of them!!

Point is that doctors whom patients can talk to, and feel deeply heard by, is the key to the successful partnership of the doctor-patient relationship.

My doctor and I worked together to come up with what to do as far as what medication to change, and when we figured out which one, it was up to me in the end as what to do. This is the #1 most important attribute that we, as pain patients, simply must have with our doctors. The ability to work together on any part of our pain management care.

When you visit your pain management doctor, the feeling in the room is ultimately that of teamwork. Talk together. Figure out what you are trying to accomplish first and foremost during that visit. Remember, come prepared!! Help your doctor out a bit too.

I brought my daily medication log, jotted down the monthly ‘total’ of how my pain had done over the time since I last saw my doctor, and that helped so much in my visit.

I spoke with my doctor about feeling that deep pain the most when I stand up, and that I felt as if I would benefit from 2 rods in my back, long enough to cover 12 levels, (all the Thoracic vertebrae), and he said, “You feel unstable in your spine?” Yes!! That was perfect! The word described exactly how I feel in my spine. And it’s a great medical term to put down in my chart.

It is through our talking, getting to pinpoint exactly what we are there to do: Accomplish solving a problem. And for that, we all need ourselves and another person who will talk openly, honestly, seriously, and with an attitude of doing it together.

I could never do this myself. I know what to use, how to take it and how to titrate up or down. Nursing and years of pain have taught me this. Options for complete medication change are not many in the pain arena. Then there is the how to change it when things need to be altered. I knew the options available to me, and therefore, had been considering them days before the doctor visit. This made the decision simpler, faster, and more of a feeling of unity when my doctor totally agreed at what I chose to do.

My spine feels unstable. Great word doc! Today is one of those days when the pain is constant, unrelenting, deep, with neuropathy (**nerve pain), and severe muscle spasms. My back has gone through a real workout, and the paraspinal muscles, (**the muscles that run along your spine in the vertical position) are now extremely tight.

When I stand up, my back says, “I don’t want to be in this position.” I am compacting my spine, yet laying down is not an option. I must SIT, and always against heat. Yes, yes, I’ve tried heat for 20 minutes and cold for 20. That was more effective when I was recovering from a surgery. But now I speak of what works for pain that lasts all day sometimes, with no relief, such as today has been.

The cold and hot are long gone as I have found that heat is the only relief, modality-wise. (Modality–**A method of application or the employment of any therapeutic agent.)

In an office visit, we are all aware that time is, and always will be an issue. In any medical exchange. Yet there are time issues with those on the phone, your appointment to have taxes done, your haircut; oh it would be nice to have the person you are working with spend as much time with you as you’d choose; but we all know it just doesn’t work that way!

Ergo, (wow I really like that word, it is a good one!), why I make the most out of the time with my Pain Doc, by bringing daily notes and things that jog my memory. The relationship with your doctor needs to be one of openness, almost like one you’d have with a psychologist.

The doctor needs to know everything you feel, every medication you are taking, if anything as in a fall or accident has happened, and just to cover everything that could have precluded the increasing pain. This needs to be talked about with precision and knowledge, as serious decisions are involved.

This is your partnership. This is your LIFE! YOUR Chronic Illness, your Invisible Illness! Work on having a close, open, honest, respectful relationship with your Pain Management Doctor. Above all, work on your own side of this partnership, by keeping a pain journal, pain log, whatever works for you. Be kind to yourself, respect your doctor just as she/he respects you as a person, and I wish you the best of care for your pain.

It takes two!

NICIAW is one of the most fantastic web-based weeks for those with, and without Invisible Illnesses as it helps those who do not know much about this issue, to become aware that we can LOOK GOOD, but what is on our insides? This week of recognition is sorely needed for educating the public!

Shauna Harrelson, a Chronic Pain sufferer, who writes, “Shauna’s Life In Pain And Other Fun Things”, has suferred from pain ever since a hazing went terribly wrong in 1976. Shauna and another cheerleader to be; for senior year; tumbled in the back of a van, blindfolded; like shoes in a dryer. In those days of X-rays only, Shauna was unable to be told anything but no fractures and to go home with valium and a neck brace. After weeks in bed due to pain in her back, Shauna had radical knee surgery in her Senior Year of HIgh School, missing out on her Senior Songleading year, after football season, when she cheered in pain.

Since then, Shauna has developed many diagnoses in her spine, Spinal Stenosis, bones growing from vertebrae into her spinal cord, 2 big back surgeries, and a Spinal Cord Stimulator trial that failed. Shauna has so many bad spinal issues and such an unstable spine that standing now is hard for her, and she had to stop her beloved Nursing career due to her Chronic Pain.

Shauna is a very proud mother of a wonderful son, and her last beloved Jack Russell Terrier, age 13.

She now is under the care for Pain Management with one of THE most caring and empathetic doctors she has ever met.

See Shauna’s Blog

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