By their very nature, no illness, accident, or injury is ever convenient. Someone’s medical care should not be based on what is most expedient, practical, or affordable for anyone other than the patient! It’s important that your wishes be known if — because of the inconvenience of illness, accident, or injury — you are unable to speak for yourself. Some believe that the “Will to Live” in which you appoint a health care proxy or health care agent provides you with more safeguards than does a living will.

Recent events have raised concerns among those of us in the disability community that “the danger in our culture is not that we will be over-treated, but rather that we will be under-treated. We already have the right to refuse medical treatment. What we run the risk of losing is the right to receive the most basic humane care — like food and water — in the event we have a disability.” (Source: Fr. Frank Pavone )

It’s somehow become in vogue to say that anyone who wants to die has the right to do so, which is in contradiction to our civic and moral laws against suicide.

For some (who worry that their life wishes may not be honored), a living will is promoted as the answer. The living will lets you make plans for your future health care, but you do so by trying to predict the future. For a living will, you’re expected to make a decision today about what medical treatments you will or will not want in the future. In other words, because of and despite the fact that you don’t know (or can’t totally know) what medical condition you may need to cope with, or what treatments will be available to you at that unnamed and unknown date in the future, some argue that a living will is as open to interpretation as something somebody may claim a patient once said in private.

An alternative is to appoint a health care proxy or health care agent. Your health care agent is someone you trust; you authorize your health care agent to speak for you if, in the future, you are in a condition in which you cannot speak for yourself. Your health care proxy should be somebody who knows your beliefs and values, and with whom you discuss or have discussed these matters in detail. Then, in the event that you cannot speak for yourself, your health care agent can make him- or herself available to ask all the necessary questions of your doctors and clergy; then, once all of the details of your condition and medical needs are actually known and in accordance with your previously discussed wishes, your health care agent makes decisions about your treatment. That’s what makes appointing a health care agent much safer than trying to predict the future by establishing a living will.

Appointing a health care agent in a way that safeguards your right to life is easy. In fact, to protect yourself from having decisions made that are contrary to your wishes and beliefs, the National Right to Life Committee has designed a Will to Live that lets you name someone you trust to be your “health care agent.” Your health care agent safeguards your life when you cannot speak for yourself. In addition, to protect yourself in the event that your named health care agent is not available, The Will to Live also lets you name backup health care agents.

The Will to Live describes the treatment you do and do not want in a way that offers guidance for your health care agent and physicians; provides protection for you, your family, and health care agent from pressure from health care providers and others because it allows your health care agent to prove what you really did want; and gives your family relief from the agony of decision making by making your wishes clear.

In other words, The Will to Live is your signed legal document that names someone to act as your “health care agent” to make health care decisions for you if you develop a condition that makes it impossible for you to speak for yourself; The Will to Live includes your clear, written instructions to your health care agent about what medical treatment you would want if you can no longer speak for yourself.

The “Will to Live” Project has a download page with links to the proper documents for each state available on their Web site.

By their very nature, no illness or accident is ever convenient. Someone’s medical care should not be based on what is most expedient, practical, or affordable for anyone other than the patient!

“We pay great lip service in this country to disability rights, but as the degree of a person’s disability increases, the level of protection that person receives decreases.” -Bob Schindler, Terri Schiavo’s father.

Suggested reading and resources:

The “Will to Live” Project

The “Will to Live” Project FAQ

Will to Live Project Download Page

Not Dead Yet

National Right to Life Committee

Euthanasia FAQ

Recommended Book:

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All Rights Reserved

A Better Way to Ensure that Your Health Care Choices are Honored is a post from: Chronic Illness.org

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(Written in 2005)

I took the Terry Schiavo issue very personally.

I’m of the opinion that once a judge sentences somebody with one disability to die an agonizing death from starvation and dehydration, it’s just a matter of time before that bar is lowered to include another disability and then another….

A childhood head injury, Chronic Fatigue Syndrome, Fibromyalgia, and Multiple Chemical Sensitivities has made my “quality of life” far below what many would find acceptable.

It’s a scary climate. The year of Terri Schiavo’s death sentence (2005) was the same year that Hollywood mourned the death of one its disabled members and at the same time gave its highest awards to two films that celebrate euthanasia.

Related:

Protection for the Disabled

Too Late to Die Young

Revision Copyright © 2010 Blue Rose Bouquet Group, LLC
All Rights Reserved

The Culture of Life — The Culture of Death is a post from: Chronic Illness.org

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Disability rights involve more than those opposed to the assisted suicide and euthanasia movement that masks their agenda as compassion. There are other double standards for those with disabling conditions.

This Protection for the Disabled page includes links to disability rights publications and other resources.

Not Dead Yet
A disability rights organization that challenges euthanasia and assisted suicide.

The Culture of Life — The Culture of Death

Disability Rights publications:

Ability

Ragged Edge

Mainstream

Disability World

ouch! (a BBC publication)

Disability Resources:

Americans with Disabilities Act (ADA) Home Page

Americans with Disabilities Act of 1990

Facts About the Americans with Disabilities Act
from The U.S. Equal Employment Opportunity Commission

ADA Accessibility Guidelines for Buildings and Facilities (ADAAG)

ADA & IT Technical Assistance Centers

Looking Back While Continuing to Mourn Terri Schiavo

Today, I signed into law a bill that will allow Federal courts to hear a claim by or on behalf of Terri Schiavo for violation of her rights relating to the withholding or withdrawal of food, fluids, or medical treatment necessary to sustain her life. In cases like this one, where there are serious questions and substantial doubts, our society, our laws, and our courts should have a presumption in favor of life. This presumption is especially critical for those like Terri Schiavo who live at the mercy of others. I appreciate the bipartisan action by the Members of Congress to pass this bill. I will continue to stand on the side of those defending life for all Americans, including those with disabilities.
–President George W. Bush, 20 March 2005

I strongly believe absent a living will or other appropriate statement in writing as to a person’s wishes, we as a society should err on the side of life. It is for that reason that I hope tonight’s legislative action provides the impetus to see that Terri Schiavo’s feeding tube is restored. I celebrate tonight’s action as a part of the United State’s system of checks and balances. Our courts are the servant of the people. It is therefore a legitimate exercise of the power of the legislature to check the judiciary.
–Pamela Rice Hahn, 20 March 2005

Terri Schiavo’s Story

The Terri Schiavo Case

Original Copyright © 2005;
Revision Copyright © 2010 Blue Rose Bouquet Group, LLC
All Rights Reserved

Protection for the Disabled is a post from: Chronic Illness.org

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What causes CFS?

The exact cause of CFS is unknown. A distinct or direct cause has not been positively identified.

Some studies have shown that Chronic Fatigue Syndrome may be caused by inflamed nervous system pathways, Mycoplasma bacterial infection, or viral illness (such as Epstein-Barr) complicated by an inadequate or dysfunctional immune response. For some, the condition can occur following an injury, infection preceding or following surgery (e.g., peritonitis), or other traumatic body events that weakens or adversely affects the immune system. Age, environment, genetic disposition, prior illness, or stress may also be factors. Like most autoimmune illnesses, CFS most commonly occurs in women, usually ages 30 to 50.

Symptoms of CFS

What are the symptoms of CFS?

Many of the symptoms of CFS are similar to those associated with the flu (muscle aches, headache, and fatigue).

However, unlike the flu, while with CFS these symptoms may ebb and flow, they never go away.

(Imagine dealing with flu symptoms on a daily basis and you know how someone with CFS feels on a good day.)

What are the primary symptoms of CFS?

Primary symptoms include:

• New onset fatigue or tiredness that lasts for at least 6 months and is not relieved by normal rest
• Full-body fatigue serious enough to restrict normal activity that develops from far less exertion than was possible before the illness

What other symptoms are sometimes present?

Additional symptoms include:

• Constant headaches, different those previous in pattern, quality, or severity
• Feeling unrefreshed after normally adequate sleep
• Forgetfulness, cognitive impairment including confusion or difficulty concentrating, or irritability
• Joint pain, often moving from joint to joint (migratory arthralgias), without joint swelling or redness
• Low-grade fever (101F or less)
• Lymph node tenderness and swelling in the neck or armpit
• Muscle aches (myalgias)
• Exercise intolerance: Muscle fatigue that lasts more than 24 hours after an amount of exercise that would normally be easily tolerated

• Muscle weakness, all over or multiple locations, not explained by any known disorder

• Sore throat, red but without drainage or pus

What is the difference between CFS and “chronic fatigue”?

Chronic Fatigue Syndrome (ICD10-CM or WHO ICD-10 G93.3) has a different medical diagnostic code than idiopathic Chronic Fatigue (WHO F48.O).

There are different symptom requirements used to diagnose these different entities.

Chronic Fatigue Syndrome and chronic fatigue are sometimes incorrectly used as synonymous, when in actuality they are two entirely different diagnoses. Chronic fatigue is often a symptom of other conditions, such as Chronic Fatigue Syndrome, depression, and so forth.

Patients can sometimes get relief from the chronic fatigue that accompanies other conditions. As the condition causing the chronic fatigue improves, the chronic fatigue lessens.

At present, there is no cure for (or complete relief from) Chronic Fatigue Syndrome.

CFS Tests

Everybody gets tired! How is the fatigue of CFS different?

The fatigue of CFS is all-encompassing. It involves not only the feeling of having gone without rest (even after getting a full night’s sleep, for those that fortunate; disrupted or irregular sleep patterns is often another side effect of CFS), the fatigue includes muscle weakness, cognitive impairment, and ongoing headaches of varying degrees.

Tests have shown that many CFS victims already start off with a lower-than-normal oxygen level in the brain, and exercise, instead of increasing it, actually makes it go lower. In addition, studies such as those noted in a 2004 article Muscle Metabolism with blood flow restriction in Chronic Fatigue Syndrome in the Journal of Applied Physiology have shown that blood flow to the muscles is also altered.

Melissa Kaplan describes this by saying that “the body reacts to even mild exercise, like a short walk, as if it has run a marathon on top of working an 80-hour week: extreme pain, fatigue, cognitive dysfunction…and it lasts for 36-48 hours.”

What are some of the tests for CFS?

Physical examination is usually conducted to confirm the fever, lymph node tenderness, lymph node swelling, or other symptoms, but often examination alone is not considered conclusive.

A health care provider can deduce a diagnosis of CFS only after ruling out all other known possible causes of fatigue, such as:

• Drug dependence
• Endocrine diseases (such as hypothyroidism)
• Infections
• Muscle or nerve diseases (such as multiple sclerosis)
• Other illnesses (such as heart, kidney, liver diseases)
• Other immune or autoimmune disorders
• Psychiatric or psychological illnesses, particularly depression (because the severe fatigue of CFS itself may bring about depression, a diagnosis of depression does not rule out CFS; however, fatigue related to depression alone must be ruled out in order for CFS to be diagnosed)
• Tumors

What symptoms must be present for a CFS diagnosis?

A diagnosis of CFS must include:

• Absence of other causes of chronic fatigue (excluding depression when other symptoms are present)
• At least 4 of the other symptoms listed
• Extreme, prolonged fatigue

There are no specific tests to confirm the diagnosis of CFS; however, a variety of tests are usually conducted in order to exclude other possible causes of the symptoms.

Note: In order to rule out muscle or nerve diseases and/or psychiatric or psychological illnesses, a complete neuro-psych exam may be a part of the diagnosis process.

Some typical findings on tests that, while not specific enough to diagnose CFS, are seen consistently in people who are eventually diagnosed with the disorder. These include:

• Brain MRI that shows evidence of swelling in the brain or destruction of some of the nerve cells (demyelination)
• Higher levels of specific CD4 T white blood cells compared to other types of white blood cells (e.g., CD8 T cells)
• Specific white blood cells (lymphocytes) containing active forms of EBV or HHV-6

What treatment is available for CFS?

At present, no treatment has been proven to be effective as a way to cure CFS. Rather than hope for a cure, the symptoms are treated instead. Many people with CFS experience depression and other psychological problems that may improve with treatment.

Some of the proposed treatments include:

• Antianxiety drugs to treat anxiety
• Antidepressant drugs to treat depression
• Antiviral drugs, such as acyclovir
• Drugs to fight “hidden” yeast infections, such as nystatin
• Medications to reduce pain, discomfort, and fever

Unfortunately, for many with CFS, medications can cause adverse reactions or side effects that are worse than the original symptoms of Chronic Fatigue Syndrome.

While patients with CFS are encouraged to maintain active social lives, and mild physical exercise may also be helpful, for many this isn’t possible.

What long-term effects should somebody with CFS expect? (In other words: What is the prognosis?)

The long-term outlook for patients with CFS is difficult to predict at the initial onset. Some patients have been reported to completely recover after six months to a year. Others may take longer for a complete recovery. Some never recover or return to pre-illness energy and wellness levels.

What are the complications of CFS?

CFS causes what might be considered lifestyle restrictions. For people for whom the fatigue is so severe or unpredictable that they are essentially disabled and homebound during much of the course of the illness, this leads to social isolation and an inability to maintain steady employment.

What should I do if I suspect I have CFS?

Call for an appointment with your health care provider if you experience persistent, severe fatigue, with or without other symptoms of CFS. Remember: There are other serious disorders that can cause similar symptoms; those need to be excluded.

Note:

Canadian CFS Diagnostic Code

Because of the efforts of The Myalgic Encephalomyelitis Association of Ontario, Dr. Alison Bested, and others, Chronic Fatigue Syndrome (CFS) now has an official diagnostic code (OHIP Diagnostic Code 795) by the Ontario Medical Association as a Neurological Illness. According to information on the The National ME/FM Action Network, the association had hoped to get “Myalgic Encephalomyelitis (ME)” included in the diagnostic code definition, but they’re celebrating the success all the same.

Exercise While Sitting Down (with the help of the Bounce Back Chair)

Because the bounce back exercise chair increases the flow of lymphatic fluids throughout the body by as much as 10 times their normal rate, it helps the body remove toxins, strengthens the immune system, increases muscular strength, and improves blood circulation. Also sometimes referred to as the Bounce Back Fitness Chair, Bounce Back Exercise Chair, and Bounce-Back Chair.

Pictures of the Bounce Back Exercise Chair

Chronic Fatigue Syndrome Resources

View the Chronic Illness Serenity Prayer (multi)
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For most designs, you can choose from a t-shirt, coffee mug. set of postcards, set of greeting cards or note cards, apron, coaster, framed tile, sweatshirt, and other gift gear.

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CFIDS.org is reporting that, thanks to the work of advocates Annette and Harvey Whittemore whose daughter Andrea has struggled with CFIDS for more than 17 years, the state of Nevada has approved funding for a state-of-the-art clinic and research center for Chronic Fatigue [and Immune Dysfunction] Syndrome and cancer research. For more information, read Out & About: Something to Celebrate.

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In her book Too Late to Die Young, Johnson details what life is like for someone who must depend on a personal assistant to help her attend to many of her daily needs and chores. Johnson explains how she faces her challenges from the seat of her motorized wheelchair by tackling none other than the animal rights advocate and euthanasia champion who believes that “children like her” should be killed at birth to allow the parents to have children who will lead a “happier life.”

Recommended reading:

Unspeakable Conversations
A February 16, 2003 The New York Times Magazine article by disability rights lawyer Harriet McBryde Johnson. In the article, Johnson discusses her trip to Princeton during which she takes part in a class discussion about disability-based infanticide and the prejudices that propel the assisted suicide movement. Johnson also describes her encounters with infanticide advocate Peter Singer.

Time to take back the ADA – RECLAIMING OUR CIVIL RIGHTS
An article by disability advocate lawyer Harriet McBryde Johnson about the clarifications that need to be made to close the loopholes in the Americans with Disabilities Acts. She argues that the burden of proof should be on the employer to show that an employee cannot perform a task, and that the ADA needs to be broadened so that people don’t fall through the cracks of the system.

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Advocacy efforts to increase CFIDS awareness is not just a one-day event.

The May 12th, 2005 Virtual Lobby Day resulted in 2,516 messages being sent from the The CFIDS Association of America Grassroots Action Center to lawmakers and media professionals. In addition, messages were delivered in person by 58 CFIDS advocates who conducted nearly 80 meetings on Capitol Hill!

Complete T-Shirt and Gift Merchandise Index for “CFIDS/ME/CFS Sucks!” design

Advocacy efforts to increase CFIDS awareness is not just a one-day event, however. In fact, if you haven’t yet taken part, the CFIDS Association of America has updated information on their site to help make it easy for you to participate now.

There are four separate actions targeting Congress, the Secretary of Health, and the media. Letter templates are available to help make your efforts easier; the templates also make it easy for you to add information you wish to share about how CFIDS has affected you.

For directions on how to write to your own members of Congress, click on this link.

Once you’re at the site, you’ll see a prompt to enter your ZIP code. Once you’ve done that, you’re ready to lobby!

This link will direct you to information on how to go about writing to leaders of the health funding committee in Congress, Secretary Leavitt, and your local media.

Also of interest is Lobby Day advocate Janet Helin’s essay on CFIDS advocacy and her CFIDS Lobby Day 2005 experience.

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Whether you refer to it as Chronic Fatigue Syndrome (CFS), Chronic Fatigue Immune and Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.), the name alone cannot convey the devastation brought about by having to cope with this condition. The “fatigue” in the name refers to much more than just being tired. Those who suffer from this condition experience a fatiguing condition similar to how one feels when you have the flu. Only with the flu, you eventually get better. Imagine dealing with those muscle aches, the weakness, headaches, and other symptoms on a daily basis and you know how someone with CFS feels on a good day.

For more information, see: What is Chronic Fatigue Syndrome?

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