Is Living With Illness Choosing to Give In?

Lisa Copen

Nearly one in two people live with an illness, and most chronic illnesses are invisible. Conditions such as chronic fatigue syndrome to diabetes rarely have visual side effects that people can see. It creates a challenge for those who live with invisible daily chronic pain, symptoms, and side effects.

For example, though I look fine on the outside, I have lived with rheumatoid arthritis for 18 years. It has been degenerative, despite the best of medical treatments. Recent tests have revealed that I have shoulders that are so disintegrated it’s amazing they still work, knees full of pieces of bone and old blood clots, and osteoporosis.

I have started seeing a new rheumatologist who I hope will more aggressively treat my disease and slow down its progression. I am 42. I told my physician, “My son is 8. I need at least 10 more good years. What can I do to make this happen?”

Despite the detours, I have had the opportunity to build a nonprofit organization of nearly 15 years, to serve those who live with chronic illness, through a Christian foundation of faith. Although I believe God still heals today, He rarely does it according to our schedule. In the meantime, there is a strong need for friendship and support.

Between my family and ministry, I have ample reason to get up out of bed each day and not allow my illness to define me.

I have never given in and allowed it to consume me.

But because I do not enter marathons, audition for reality TV show contests on deserted islands, or sign up for karate class, some people assume I have.

“You’ve just given in to your illness,” I have heard from both strangers and friends. “You need to fight it more.” This is often followed by their specific advice on what I need to do to “fight it.”

What defines “giving in” to your illness? There are a variety of ways that people who do not have an illness define the actions of those who are ill.

1. We are not using the alternative treatment of product that they sell that will make it all go away.

My husband was recently berated by a friend’s wife, “We are so mad at you guys!”
“Why?” he asked.
“Because you won’t try the water!” she replied.
Honestly, I’ve done my research and if I am going to go with a marketing scheme that promotes health benefits for just $200+ a month, it will be the chocolate one. I mean, who doesn’t like chocolate?

2. We are seeking health assistance from doctors or medical specialists.

A friend on recently posted on a social network that he cured himself of a disease by ignoring the “mumbo jumbo of doctors” and asking his dad for advice. He claims he “never gave in.” In his eyes, because I am seeing a rheumatologist with “MD” behind his name, I have chosen to give in. No one cares that my rheumatologist happens to have his own clinic about specialized medicine, and that has written books on the alternative treatments he uses with patients, in addition to Western medicine.

3. We are pacing ourselves.

Chronic illness uses up a great deal of energy and only the one who lives within the body knows what they can and cannot do on particular days. Sometimes we have to give it our best guess and make a choice, not positive if an event will cause us to be tired for twelve hours or four days. When we choose to not attend an outing we’d planned on because we are in deep pain, we frequently hear, “Oh, you are just giving in to your illness. You are letting it control you.” No, we had to make a choice and we did. Healthy people will understand this when they reach about age 80.

4. We are not where someone wants us to be spiritually.

We all grieve, we question, and we sometimes get depressed, regardless of our faith. But if these emotions are noticed by others they are quick to offer the spiritual version of “Don’t worry, be happy.” We are told that we are allowing the sin in our lives to get the better of us and it’s causing our illness. We are not praying consistently, or hard enough, or in the right way. One man recently told me that I needed to try a particular alternative treatment (that he happened to sell) and if I did not, then it was obvious I was just giving in to my illness and really did not want to get well … and that God knew that!

5. We are not doing physical activities that we are expected to do.

If you watch well known magazines written specifically for those with certain illnesses, even they are guilty of featuring people who have the disease but are still able to do extreme physical activities. A person with rheumatoid arthritis may run a 25-mile marathon and are quoted saying, “I chose to never give up.” I have chosen to never give up either, but I am blessed to get my feet into extra-wide diabetic shoes and walk around the grocery store. My own limitations, or those of one who uses a wheelchair each day, is not something that is a measurement of determination or stubbornness about our disease.

Each person who live with a chronic illness knows the daily difficulties in finding a balance between living his life in the fullest way possible, and managing his disease effectively at the same time. There will be many times that our choices do not make sense to people around us. When we hold back from a new treatment or a fun outing, we will be told we are “giving in” and letting our illness define us. And when we take a chance and stretch ourselves, we will be told we are not thinking things through or considering the consequences or risks involved in our choice.

If you live with a chronic illness, only you are capable of making the wisest choice possible based on many factors. If you love someone with an illness, be cautious in sharing your opinion about his or her decisions. If you are genuinely concerned, instead of offering advice, ask questions, such as, “I know you must have given a lot of thought to your decision to (fill in your blank here.) What was it that persuaded you?”

About the Author: Lisa Copen is the author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend”, founder of National Invisible Chronic Illness Awareness Week and Rest Ministries. She is a sought-after speaker who brings joy, humor, and hope, to those who live with chronic illness, from her own 18-year journey with rheumatoid arthritis. This article was formerly featured at the Huffington Post where you can read 40 comments.

Popularity: 14% [?]

My Illness No Longer Controls Me

By: Carolyn Matheson, Master Certified Coach

Last Saturday a special friend was having a party and I really wanted to be fit enough to attend. To be able to enjoy good food and company and be able to laugh my head off.

I have lost count of the number of times I have said yes to friends and needed to cancel at the last minute. I recognize today that I have very limited energy and I must use it wisely. I rested the week before and was relieved to feel good the day of the party.

I have become very talented at putting concealing make up so I don’t look unwell. That of course has its downsides but on this day it was important for me to just feel ‘normal’. I had a wonderful time and treasured every minute I spent at the party.

As I look back over the last six years I can see that my life has followed the path it has meant to follow. I have a rare neurological condition for which there is no cure. Any medication I take just alleviates symptoms; today I don’t think of having this illness for a lifetime one day they may find a cure. I spend a week in hospital every 12 weeks but I don’t think about that until the day arrives. I do try and take each day as it comes.

It is taking time for me to heal, not just dealing with a physical illness, it is the emotional toll that is taking the time to acknowledge and work through in my own way. I have had to get used to a whole new way of living.

When I got sick I felt all my power had been stripped away from me. There are times when I have felt very lost. Doctors continue to provide me with all the medical care I need. I couldn’t ask for better doctors than I have right now.

What I found I needed was to make huge adjustments to all parts of my life. Has it been hard? Yes of course it has. I have struggled with my headspace; struggled to make changes. I have found it difficult to cope with everyday life.

I have had to make some different choices. They are just different. I am not grateful I got sick but I am now grateful for the different opportunities that have opened up in my life. My illness no longer controls me.
It is true that my illness has stripped me bare of everything I know today. I can now look back and truthfully say I have come through with so much more. I am still Carolyn but my whole approach to life is now different. I have integrated what I have learnt on the way as a coach with the emotional high and lows of a chronic illness.

Carolyn a Master Certified Coach and founder of People Work Best Ltd, has worked for 30 years with executives and their teams across the world. She now combines her extensive coaching experiences with writing about her own insights in how to deal with a long term and very disabling illness. It is her mission to empower one patient at a time to take charge of their health. As well as offering one to one coaching, Carolyn is also a professional speaker. Contact: carolyn@peopleworkbest.com; twitter @capcoach; blog www.carolynsmatheson.com

Related articles by Zemanta

• When Co-Workers are Chronically Ill Or Have Cancer: How To Support Them (invisibleillnessweek.com)
• Can You Still Be Friends If They Think You Are Faking Your Illness? (invisibleillnessweek.com)

Popularity: 5% [?]

Savoring the Privilege of Walking

By Ann Pietrangelo

Do you recognize disability when you see it?

Last week’s post [at Care2] about an able-bodied woman using a handicapped parking space, then suing over the ticket she received, resulted in spirited conversation in the comments section.

It’s an emotional topic for a lot of people, not the least of whom are those who have the legal right to use the specially marked spaces, but who have an invisible disability. Judgments are often made based on nothing more than appearance.

When a person with an invisible disability pulls into a handicapped parking space, even with the appropriate legal tags, they are apt to get stares, glares, and outright anger.

We can try to educate others to understand invisible illness, should the inspiration strike, but we should never apologize for needing or using a handicapped parking placard. We owe no explanations. It stings, but not everyone will get it or care. Such is life.

If you’ve ever observed a seemingly healthy person pull into a handicapped parking space and felt anger toward them, you might want to consider there might be more to the story… and thank your lucky stars for your good fortune.

It could be a heart condition, a neurological condition, or any of a long list of chronic illnesses that affect mobility. Appearances can be mighty deceiving. Not all disabilities require a wheelchair.

Rather than give up and lock themselves away, these folks choose to go out into the world. Bravo! The little extra help from a more convenient parking space makes that less daunting.

While you observe them walk from the parking space, you are not privy to the advance planning that allowed them to get this far on this day. You don’t see added burden when they find that a business has stairs, but no elevator; or a door too heavy to pull; or the long line at the register that will severely test their strength and stamina.

If you don’t need special parking, please don’t resent or judge those who do. It is called a privilege, but no one really wishes for health problems in order to get this privilege. No, people who need it would rather not. Trust me on that.

Daily life is can be a hassle, and wouldn’t it be great if we could all just pull up in the first spot in the lot and get to our business?

That we have the ability to walk and take care of our own errands… that we can climb the stairs and pull the door open and even hold it for the next person… that we do not need the handicapped parking spot… that is the true privilege.

I have relapsing/remitting multiple sclerosis, and with that comes constant change. Sometimes I can’t walk more than a few feet at a time, sometimes not at all; much of the time I can walk, and it is a glorious privilege, one I shall not squander or take for granted.

If you can walk without too much difficulty, if you do not require a handicapped parking placard, you are fortunate indeed.

Savor the privilege of walking.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes.

This was originally posted on Care2.com and has been reprinted with the author’s permission. Follow Ann on and has been reprinted with the author’s permission. Follow Ann on Twitter @AnnPietrangelo

Related articles

• Ever Considered Leaving a NICE Note for Some Parking in the Handicapped Spot? (invisibleillnessweek.com)
• Parking officers blasted for using disabled spot (thestar.com)
• Just Imagine. . . Trying to Explain Daily Life to a Healthy Person (invisibleillnessweek.com)

Popularity: 3% [?]

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!

Related articles by Zemanta

• Creating Pain Awareness Through Photography (invisibleillnessweek.com)
• Canada proudly hosts international pain experts at the World Congress on Pain (newswire.ca)
• Rest Ministries Sponsors Invisible Illness Week (chronicillnesspaindevotionals.wordpress.com)

Popularity: 5% [?]

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 Porphyria Foundation www.porphyriafoundation.com
• 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
• APS Foundation of America, Inc. http://www.apsfa.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 Consumers www.medicalconsumers.org
• Crohn’s and Colitis Foundation www.ccfa.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
• Ehlers Danlos/Hypermobility Syndrome http://teens.hypermobility.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/
• Intracranial Hypertension Research Foundation http://www.ihrfoundation.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

Related articles

• What Exactly Is A Chronic Illness And Who Defines It? (invisibleillnessweek.com)
• Creating Pain Awareness Through Photography (invisibleillnessweek.com)

 

 

 

 

Popularity: 13% [?]

Multiple Chemical Sensitivity Can Be Considered an Invisible Illness

“I can’t even go to church anymore now that perfumes make me break out and start itching so badly.”
“I never thought I would end up so simply because I decided to get my carpets cleaned. That started it all and life has never been the same.”
“Everyone thinks I am exaggerating the amount of pain I am in. When I say I have a migraine… I mean I am ‘out’ for at least 3 days.”

By: Meredith Lee

Multiple chemical sensitivity (MCS) is a little understood illness that has arrived on the medical horizon in the late ’60′s but became increasingly known after hundreds of veterans complained of associated symptoms after their stint in the Persian Gulf War. The medical community has yet to officially name the illness as a viable syndrome and the Centers for Disease Control and Prevention has not provided an official diagnosis as of yet.

However, many people around the world still suffer with common symptoms such as loss of memory, poor cognitive functions, nervous system interference, body aches, allergy symptoms and a plethora of other problems that appear after either a short term exposure to high levels of a chemical or long term exposure to low levels of various chemicals. It is believed that the syndrome did not significantly appear until after the 1950′s when various new chemicals were introduced to building materials, food sources, and general manufacturing processes.

Since the AMA has yet to pronounce their belief that this syndrome actually exists, medical treatment and research studies have been slow to evolve. However, as more and more physicians are seeing a growing number of patients who complain of serious and many times debilitating symptoms, there has been a number of medical doctors who believe that multiple chemical sensitivities syndrome actually exists. There are other names given to MCS syndrome such as 20th century disease, chemical sensitivities, and environmental illness (EI) probably because of the broad symptomology that exists from patient to patient. While MCS sufferers may react to traditional allergens such as foods, mold and pollens, the primary symptoms that set this illness apart are associated with various chemical exposures in day to day life.

The typical chemical offenders for those who suffer with multiple chemical sensitivities include formaldehyde, phenol, benzine and petroleum based chemicals. Most people are surprised to discover that even the most common items may be laced with toxic chemicals. From food to clothes and building materials to cleaning products, there is almost no way to escape everyday exposures to various chemicals that have been applied to these products.

Did you know that a teflon coated frying pan has small amounts of formaldehyde in the teflon material used to produce a non-stick cooking utensil? In fact, a heavily coated teflon pan can be heated sufficiently to emit enough formaldehyde fumes to kill a nearby pet bird in the home.

While the acceptance of MCI from the traditional medical community has been slow to develop, there are some medical doctors who have seen enough patients to convince them that there is a viable health problem that cannot be explained away. Some doctors, in fact, have begun to add environmental medicine treatment as an additional specialty so that they can meed the needs of these particular patients. There are clinics, support groups, medical personnel, and even non-traditional housing available for those who have special needs because of this illness.

Multiple chemical sensitivities is considered one of the invisible illnesses that plague many sufferers who find themselves virtually disabled. If you or a loved are suffering from MCS, there are many online sources that can help provide more information and support in dealing with the difficulties of multiple chemical sensitivity.

Meredith Lee writes about a variety of interesting topics for online readers. Come visit the newest website at Bed with Drawers which can help people find their best deals on a trundle bed with drawers and more info about quality storage beds for everyone.

---

Multiple Chemical Sensitivity Resources We Like

The Clean Indoor Air Campaign The CIA Campaign strives to educate medical facilities, businesses and churches on how to create a less threatening environment for this growing number of people. True, we may not be able to protect them from every possible harm, nor can we guarantee that our actions will provide a fool-proof environment when out in public. However, if we all do our part, we can make a huge difference by making our facilities a more favorable haven.

BOOK: Comfort in the Storm: Devotions for those with Chemical Sensitivity People describe the challenges of living with Multiple Chemical Sensitivity (MCS) in a variety of ways. People describe the challenges of living with Multiple Chemical Sensitivity (MCS) in a variety of ways. To some, it feels like being locked in prison. To others it is like being in a nightmare they wish they could wake up from. In the midst of the various trials associated with MCS, many are in desperate need of encouragement. Whether you have furniture chemical sensitivites, multiple chemical sensitivities and asthma, or every a breath of someone’s perfume leaves you gasping for air, this book will bring comfort to your soul. In this collection of devotionals, Comfort in the Storm: Devotions for those with Chemically Sensitivities, Janine Ridings candidly shares anecdotes about her journey through the storms of MCS, and how she has found comfort through her relationship with Christ.

Share Care and Prayer, Inc. a Christian-based ministry for sufferers of EI/MCS and related illnesses. Many articles, books, tapes, and tape/video lending library available. Contact: Share Care and Prayer, Inc., P.O. Box 2080, Frazier Park, California 93225-9987.

Related articles by Zemanta

• Chronic-illness group voices call for national diagnostic clinic (canada.com)
• Can woman with chemical sensitivities be helped? (healthzone.ca)
• Multiple Chemical Sensitivities Are Real (prnewswire.com)

Popularity: 5% [?]

10 Things I’ve Learned From Chronic Illness

Jamee over at A New Kind of Normal  shares some of the things illness has taught her:

1. There is some truth to the old adage “What doesn’t kill you will make you stronger” (even though I think that things that in fact may be killing us can still make us stronger). After my initial diagnosis I never thought that I would ever be able to be strong again but the past 7 years have taught me that I am stronger now than I ever was.
2. Sometimes you need to be like Gibbs and go with your gut. If you feel like something is not right, it probably isn’t and you need to learn to be your own advocate. Ask questions and push for answers. While you cannot trust everything you read on the internet, it is important to research and educate yourself.
3. Sometimes laughter is the best medicine. When I’m feeling blue, popping Finding Nemo can do wonders for my spirit, especially now that I can share it with my daughter. Dorie is a great doctor :)
4. Doctors are not always right and there is nothing wrong with asking for a second opinion. I’m not sure my Celiac would have ever been caught had I not sought a second opinion.
5. Buy cute pajamas to wear after surgery. It gives you a little bit of pampering when you need it most. If you know you’re going to be donning a hospital gown for a couple days, buy cute socks. Believe me, after 4 surgeries, it goes a long way!
6. Finding a support team/group is absolutely essential. I do not know if I would have ended up where I am today with the support of others. After my endometriosis diagnosis I was lucky to find GirlTalk (an online support group through the Endo Research Center) that I became a member of and now serve as the Program Director. During our infertility treatments, I found a wonderful group of ladies that provided support and encouragement. It doesn’t matter if you find a support group that meets in person or online. Knowing that you are not alone gives you strength to keep fighting the fight.
7. Cereal can be a perfectly acceptable meal for breakfast, lunch, and dinner.
8. Your faith gets challenged. While I never doubted God and His grace and love, I had my share of questions. And it was through the wrestling and searching for answers that I learned more about God than I ever did in seminary. Not that I have all of the answers to my questions. In fact I may have more questions know than ever but I know who I serve and I know that I can trust His character and that that is enough for me.
9. Find an outlet whether it is blogging, painting, or songwriting. Healing comes when we open ourselves up and acknowledge our hurts, hopes, and dreams. When I began this blog in 2007, I would have never guessed how redemptive it would become to my faith and health.
10. You are more than your disease/diagnosis. It is important to never ever lose sight of that. I am determined to let the world know that while yes I may have multiple illnesses, I am a person and a warrior and I will not be overcome.

Jamee is a wife, a mom and a follower of Christ. She says, “I am also a warrior battling multiple chronic illnesses. In life, I have learned that sometimes things happen and life doesn’t always go back to the way things were. Instead, you must find a new kind of normal. ” Read her blog A New Kind of Normal.

Related articles by Zemanta

• Being There For Others When You Are Ill And Also The Caregiver (chronicillnesspaindevotionals.wordpress.com)
• Climbing Out of the Pit (chronicillnesspaindevotionals.wordpress.com)

Popularity: 1% [?]

What Exactly Is A Chronic Illness And Who Defines It?

by Lisa Copen

If you were to walk up to a person on the street and ask him what he believed the difference was between illness and health, chances are that you would likely receive a fast reply about how health is when the body works correctly and illness is when it does not.

When one starts to live with daily symptoms that resemble a chronic condition, however, the necessity of needing to understand the difference between a healthy body and a chronically ill body becomes much more important. It comes as a surprise to many people who are diagnosed with illnesses such as chronic fatigue syndrome, that many diseases are still surrounded with great mystery, even from the medical community. Long-term symptoms are not fully known.

This does not negate the need, however, for one to seek answers. When the definitions of health and illness significantly impact your life, it obviously becomes a more personal issue. And the validation to have your pain recognized by both friends, as well as medical professionals, can become quite important. One needs someone to listen and diagnose symptoms of his or her illness.

The definition of chronic illness seems like it would be a simple answer even though there are thousands of types of chronic illness: Health is feeling good; illness is the lack of health or appearing overweight or out of breath. But consider the fact that there are many people who actually are quite ill, but who appear to be in great health. How many times have we heard of a perfectly healthy forty-year-old man having a heart attack? Or a young woman having a stroke that is completely unexpected since she runs marathons annually?

So if one’s appearance or “feel good” measurement doesn’t work accurately to decipher the difference between health and illness what do we use to determine it?

Those who cope with daily chronic pain due to a chronic illness may be surprised to hear the physician ask, “Do you think you can be a healthy chronically ill person?”

According to Derek Yach, who presented on the topic of “Health and Illness: The Definition of the World Health Organization,” both societies and individuals have a variety of definitions of what is regarded as health. These definitions have all undergone scrutiny and criticisms.

How can health be determined after all? For example, does life expectancy or infant mortality rate statistics determine a society’s health? While we serve up lunches for our children full of sugar and poor carbohydrates, other groups turn away from that cause and instead pressure McDonald’s to remove toys from Happy Meals and have a McDonalds calorie list. While the toys may be nice perks, not every mother is Googling the McDonalds Happy Meal toy schedule. Moms are still saying, “Eat your food and then you can play.”

Are we setting unrealistic expectations on people to believe that everyone can obtain some level of “health”? Defining health and illness will always be a vague science because it is often the sociological definition and each country will have difference measurements to determine their level of health and illness, oftentimes emphasizing health (or illness) with certain intentions for international purposes.

And so this brings us once again to the question of “What is a chronic illness?”

Medically speaking, a “chronic” condition can be defined as any medical state of pain or symptoms that last 3 months or longer. This definition is provided by the U.S. National Center for Health Statistics. Chronic conditions typically have symptoms or pain that persists, regardless of treatment, such as the autoimmune illness chronic fatigue syndrome, multiple sclerosis, lyme disease, Alzheimer’s disease, migraines, or back pain from an event like a car accident.

Despite the fact that America may be well known for their well-being, nearly 1 in 2 American live with a kind of chronic pain, condition, or illness. This can include anything from chronic migraines to disabling back pain. This is according to the report “Chronic Care in America: A 21st Century Challenge” completed by the Robert Wood Johnson Foundation.

Our society has firmly held the opinion that the commonly advertised medications will cure our illness or at least make all symptoms soon disappear. And we are told this is true: that we just need to follow the advice of the pharmaceutical companies and soon we will be as good as we used to be!

It is not unusual for us to believe that pain management is not the “management” of any pain but the complete and total removal of the pain. And curing one from that pain indefinitely. If a medication does not give us back our life as it was before illness, we assume the medication simply did not work; not that it worked to the best of its ability.

The World Health Organization (WHO) was established in the year 1948 and at that time the word health was given the definition as “being a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” According to the online encyclopedia, Wikipedia, it defines the word illness as “a state of poor health.” In fact, this source states that “Illness is sometimes considered a synonym for disease.”

Many people would claim that true health is more about having a peaceful state of mind; an attitude about life that includes joy. They would say that health is not defined what your lab test results may expose about your body and its ability to function.

This can be a sensitive issue. There are healthy people who live with extreme chronic illnesses, but they stay as fit as possible in spite of their conditions. Other people may have wonderful genetics and be very healthy according to lab tests, and yet they put their body under great physical stress. And then if they get an illness, was it caused by the stress or was it an illness they likely would have gotten eventually anyway?

This starts to get into the area of the definition of social health, trying to understand which comes first, the stress or the illness? There are a variety of social factors that determine health.

To wrap up the topic, it can be difficult in our society to find a solid definition for chronic illness, because, depending on who you ask, the odds are that a variety of terms will be given. It’s true that chronic illness has a long list of frustrations and burdens; I know this because I have lived with illness for nearly two decades. But I also try to understand that joy is a choice I can decide to focus on. And while lab tests can determine if I have an illness or not, and its severity, no one has the power to take away my joy or how I find it each day.

Here is a 2-minute video where I, Lisa Copen, share some surprising news about who believes they don’t know anyone who lives with illness!

Lisa Copen is the founder of Rest Ministries and National Invisible Chronic illness Awareness Week, as well as the author of Why Can’t I Make People Understand? Chronic illness doesn’t have to be depressing! Subscribe to receive daily emailed encouragement from the largest Christian outreach for people with illness. Don’t miss Rest Ministries great books and gifts we’ve selected for people coping with illness.

Related articles by Zemanta

• Where Do I ‘Belong’ When I Live With Chronic Illness? (chronicillnesspaindevotionals.wordpress.com)
• When God Says ‘Go’ But Your Body Says ‘No’ (chronicillnesspaindevotionals.wordpress.com)

Popularity: 2% [?]

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.

Related articles by Zemanta

• Chronic Pain Makes 50 Year Olds Feel 80 (barbarany_9.blogspot.com)

Popularity: 4% [?]

Citizens For A World Free From Chronic Pain Giving Away Ebooks For Invisible Illness Awareness Week

Rome, Italy (PressExposure) September 15, 2009 — In honor of National Pain Awareness Month and Invisible Illness Week (September 14-20), Citizens for a World Free From Chronic Pain is giving away 500 free e-version copies of Forever Free From Chronic Pain by chronic pain elimination expert, Prof/Dr. Brian Rothbart.

Chronic Pain, an often invisible illness, is one of the biggest health issues facing the United States today. According to the American Pain Foundation, more people suffer from chronic pain than cancer, diabetes and heart disease combined. Studies also show that chronic pain is the leading cost of medical care in the United States and cases of chronic pain have risen as much as 38% in the last twelve years.

Citizens for a World Free From Chronic Pain (CWFCP) is a group created to inform the millions of chronic pain sufferers worldwide that theydo not have to accept drugs or ongoing pain management as the only solution.

The book being gifted, Forever Free From Chronic Pain, outlines a drug-free, surgery-free option for the permanent elimination of many types of chronic muscle and joint pain.

“I wrote this book specifically for the chronic pain sufferer” says author Prof/Dr. Rothbart. “It’s about helping people understand how their body works and the source of their chronic muscle and joint pain so they make informed choices about how to deal with it.”

Prof/Dr Brian Rothbart, internationally recognized chronic pain expert and pioneering researcher and physician, discovered the previously unknown source of chronic musculoskeletal pain and invented an innovative therapy which eliminates it without the use of drugs or surgery.

About Citizens for a World Free From Chronic Pain

To learn how to receive a free ebook and to learn more about Citizens for a World Free from Chronic Pain, please visit: http://bit.ly/16cJsX

To learn more about the book, Forever Free From Chronic Pain, please visit: http://www.foreverfreefromchronicpain.com

To learn more about international chronic pain expert Prof/Dr. Brian Rothbart: http://www.rothbartsite.com

To learn more about National Invisible Illness Awareness Week:
http://www.invisibleillnessweek.com/

Popularity: 4% [?]

Next Page »