5 rules for living well with a chronic illness

From a 5 May 2011 KevinMD.com posting by Carolyn Thomas

Dr. Aletta shares these five rules for living well in spite of a chronic illness like cardiovascular disease:

1. Be confident you have the right doctor. When you have a chronic illness, your relationship with your doctor is second only to your spouse or your parents. Being honest (and you must be honest!) with that person means you need to be able to trust them to hear you. If you don’t have that kind of relationship, get a second opinion. Shop around.

“In my own chronic illness career, I fired three highly recommended specialists because they were jerks. Thankfully, I’ve also had wonderful physicians who literally saved my life and my mind.”

2. Define your circle of support carefully. Isolation leads to depression, and it is so easy to isolate when you feel lower then dirt. People may surprise you. Peripheral friends may step up and be terrific supports, while others you thought you could count on can’t be there for you. If someone inside the circle asks, “How are you?” – tell them the truth. When someone outside the circle asks you the same question, lie. Say, “I’m fine!” and change the subject. Too often they can’t handle the truth and they suck any energy you have taking care of them. If someone asks if they can help, say yes. Accepting help is a gift to them. Trust that someday you will be on the giving end. One big way someone can help is to go to doctor’s visits with you. The extra eyes and ears take the pressure off you when the news is emotionally laden and important, even if the news is good!

“A patient of mine found her mother would get hysterical at any medical news, so it was better to keep her at arm’s length. But my patient’s mother could do laundry for her, and that made both of them happy.”

3. Protect your health as you would a small child. You are more than your illness. That part of you that functions well needs you to advocate for it. Of course, there are the basics of getting plenty of sleep, exercise and eating smart. In addition to all that, I suggest learning a new set of signals that are your clues for when you’re wearing your health thin.

“For me, it’s lowered ability to concentrate, tension in my neck and shoulders, irritability and loss of my usually dependable sense of humor. When those yellow lights are blinking, it’s time for me to stop, assess and make changes. When I ignored those signals in the past, I relapsed. Looking back I can see where I ran the red lights. So be a fierce protector of your health. Set limits and find the courage to say ‘No’!”

4. Create a new measuring stick. Your self-esteem lies in the standards with which you measure yourself as you go through life. To thrive with chronic illness, throw out the old and rethink your standards. If you are used to defining yourself by your 50-hour work week, for instance, you may feel lousy about yourself because now you can’t manage it. But finding a new standard can be tough.

“One technique I use with patients is to have them ask themselves what is reasonable? Is it reasonable to do it all yourself or is it more reasonable to delegate? Is it reasonable to register the kids in travel hockey, or is it more reasonable to stay local? In my own life and in my work I find that those who thrive despite chronic illness creatively find opportunity in their new reality.”

This is where a lot of courage is needed. Courage to address old pressures to be a certain way, and to imagine value in doing things differently.

5. Have dreams and strive for them. You had ambitions to get a degree or a promotion, to see the world or save it, to get married or have kids. Now you’re thinking, do I have to give all that up? No, you don’t. It’s imperative for your spirit that you have goals for living, big and small.

“What might change with the reality of chronic illness is the path and timing. As we reach for the stars, let’s appreciate the ground we stand on. Mindfulness has a real place in keeping depression at bay for everyone. Sometimes our dreams are right before our eyes.”

Read the entire article

 

Related articles

• If We Share About Our Illness, Do We Need to Listen to the Response of Advice? (via Chronic Illness Pain Daily Devotionals) (thechristiangazette.wordpress.com)
• >Let’s Talk Chronic Illness (lupuschronicles.com)
• More Tools from My Chronic Pain Toolkit (ohmyachesandpains.info)
• Raising the Chronically Ill Child (child-psych.org)
• Patients for a Moment (PFAM): Independence & Chronic Illness (ohmyachesandpains.info)

Are Cancers Newly Evolved Species?

Staining chromosomes with different dyes highlights the orderly nature of the normal human karyotype (left), that is, humans have precisely two copies of each chromosome with no leftovers. A bladder cancer cell (right) has extra copies of some chromosomes, a few missing normal chromsomes, and a lot of hybrid or marker chromosomes, which characterize cancer cells. (Credit: Image courtesy of University of California – Berkeley)

From the 26 July 2011 Science Daily article

Cancer patients may view their tumors as parasites taking over their bodies, but this is more than a metaphor for Peter Duesberg, a molecular and cell biology professor at the University of California, Berkeley.

Cancerous tumors are parasitic organisms, he said. Each one is a new species that, like most parasites, depends on its host for food, but otherwise operates independently and often to the detriment of its host.

In a paper published in the July 1 issue of the journal Cell Cycle, Duesberg and UC Berkeley colleagues describe their theory that carcinogenesis — the generation of cancer — is just another form of speciation, the evolution of new species.

A molecular biologists has long believed that cancer results from chromosome disruption rather than a handful of gene mutations, which is the dominant theory today. That idea has led him to propose that cancers have actually evolved new chromosomal karyotypes that qualify them as autonomous species, akin to parasites and much different from their human hosts.

“Cancer is comparable to a bacterial level of complexity, but still autonomous, that is, it doesn’t depend on other cells for survival; it doesn’t follow orders like other cells in the body, and it can grow where, when and how it likes,” said Duesberg. “That’s what species are all about.”

This novel view of cancer could yield new insights into the growth and metastasis of cancer, Duesberg said, and perhaps new approaches to therapy or new drug targets. In addition, because the disrupted chromosomes of newly evolved cancers are visible in a microscope, it may be possible to detect cancers earlier, much as today’s Pap smear relies on changes in the shapes of cervical cells as an indication of chromosomal problems that could lead to cervical cancer.

Read the article

To Help Doctors and Patients, Researchers Are Developing a ‘Vocabulary of Pain’

From the 26 July 2011 Science Daily article

All over the world, patients with chronic pain struggle to express how they feel to the doctors and health-care providers who are trying to understand and treat them.

Now, a University at Buffalo psychiatrist is attempting to help patients suffering from chronic pain and their doctors by drawing on ontology, the branch of philosophy concerned with the nature of being or existence.

The research will be discussed during a tutorial he will give at the International Conference on Biomedical Ontology, sponsored by UB, that will be held in Buffalo July 26-30.

“Pain research is very difficult because nothing allows the physician to see the patient’s pain directly,” says Werner Ceusters, MD, professor of psychiatry in UB’s School of Medicine and Biomedical Sciences, and principal investigator on a new National Institutes of Health grant, An Ontology for Pain and Related Disability, Mental Health and Quality of Life.

“The patient has to describe what he or she is feeling.”

Read the article

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Got Flow Cytometry? All You Need Is Five Bucks and a Cell Phone

From the 26 July 2011 Science Daily article

Flow cytometry, a technique for counting and examining cells, bacteria and other microscopic particles, is used routinely in diagnosing disorders, infections and cancers and evaluating the progression of HIV and AIDS. But flow cytometers are big, bulky contraptions that cost tens of thousands of dollars, making them less than ideal for health care in the field or other settings where resources are limited.

Now imagine you could achieve the same results using a device that weighs about half an ounce and costs less than five dollars.

Researchers at the BioPhotonics Laboratory at the UCLA Henry Samueli School of Engineering and Applied Science have developed a compact, lightweight and cost-effective optofluidic platform that integrates imaging cytometry and florescent microscopy and can be attached to a cell phone. The resulting device can be used to rapidly image bodily fluids for cell counts or cell analysis.

Read the article

 

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The benefits of successful patient self-management programs

Image via Wikipedia

From a 22 July KevinMD.com posting by Mark Novotny, MD

The emerging literature on chronic disease management suggests that successful programs rely on patient self management skills. Having been in the primary care role for 20 years, that initially seemed self evident and a bit “so what?” to me, thinking it meant that we just need to teach our patients a bit more in the primary care office.

However self-management skills refer to specific curricula of skills that can be taught to patients in formal programs, without doctors. Coordinating these activities with what goes on a primary care office, and the community, and other care-giving settings is critical. These specific skills involve patients setting their own goals, and then creating plans to reach those goals with the assistance of their primary care team and others, but not at the direction of their primary care team. This is a real mind shift for the primary care doctor also.

Read entire article

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Surgery as a public health intervention: common misconceptions versus the truth

From the Bulletin of the World Health Organization (WHO)

The world’s attention has recently been focused on the escalation of violence in north and west Africa. Daily reports of deaths and injuries from the region have raised concerns. What is missing from the picture, however, is the fact that many of these countries lack surgical capacity to treat the injured, and this inability to provide surgical care is contributing to a significant rise in the death toll. A recent World Health Organization (WHO) study found that more than 90% of deaths from injuries occur in low- and middle-income countries.1 This is not surprising, considering that the poorest third of the world’s population receives only 3.5% of the surgical operations undertaken worldwide.2 Many hospitals in these countries do not have a reliable supply of clean water, oxygen, electricity and anaesthetics, making it extremely challenging to perform even the most basic surgical operations.3 Despite such a surgical imbalance around the world, surgery is still “the neglected stepchild of global health”.4 No global funding organization focuses specifically on the provision of surgical care, and none of the major donors are willing to support and acknowledge surgery as an imperative part of global public health. This is largely due to the following common misperceptions about surgery that are not grounded in truth. First, many people think that surgical care can only address a very limited part of the global burden of diseases and thus is of low priority. In reality, injuries kill more than five million people worldwide each year, accounting for nearly one out of every ten deaths globally….. …Second, there is a common notion that surgical care is too expensive to be implemented as part of public health interventions. However, surgery can be remarkably cost-effective, even in comparison to non-surgical interventions that are commonly implemented as public health measures. …. ….Lastly, the focus of the global health community on the issue of surgical imbalance has been largely confined to providing short-term relief through medical missions. …

Read the entire article

Options when your drug copays are too expensive

Image via Wikipedia

From a KevinMD.com article by LESLIE RAMIREZ, MD

You have insurance and, supposedly, it covers your medicines. However, you still get stuck with a portion of the bill that the insurance company calls a “copay.” In some cases these copays can run more than $150/ month per medication (e.g. Enbrel). If you are on more than one of these expensive, branded medications the copays can really add up. What are your options?

 1. Generic alternative. Always ask your doc if there is a reasonable generic alternative. This is always the best option for you in the long run. However, if there truly is no generic medication that comes close, then check into either (or both) of the next two options.

2. Drug specific copay programs. These programs are run by the manufacturers of the drugs, aka Big Pharma (BP). Usually, these discounts are given to all patients, regardless of income.  But make no mistake, it is a way for BP to circumvent your insurance company’s cost control mechanism for prescriptions. By picking up part or all of the cost of your copay, BP trying to make their product more attractive to you and to your physician. But when the manufacturer stops offering the copay discount programs you will be back to square one. However, if according to your doctor, you must be on one of these drugs, then by all means, take advantage of the savings while they last. In the case of Enbrel, the Enbrel Support Card Program picked up the tab for six months worth of copays. To find out more info on whether such a program exists for your medication, there are many websites out there, including the manufacturer’s site.

However, I found the following two websites particularly useful:

Internetdrugscoupons.com This website shows you all available drugs that have coupons, copay and otherwise,  associated with them. It’s an ugly little site, and ignore the annoying ads for a prescription savings card. But it couldn’t be simpler to use. And all the coupons I clicked on were still valid- so it seems like the folks behind it keep it up to date. According to the mission statement on the website “[The founder] assembled this database of drug coupons to make it easy for people like my elderly parents to save money on their medications.”

RxAssist.org This is a super slick website that allows you to look up your medicines, albeit individually, to see what deals are offered. When you see a deal you click on the medicine and you are directed to the manufacturer’s website. According to the About section of the website, RxAssist.org was established in 1999 with funding from The Robert Wood Johnson Foundation.

3.  Disease specific copay programs. There are many organizations that offer patients with specific diseases, such as cancer and HIV/AIDS,  assistance with their prescription copays. These programs often require financial ability-to-pay information from you to qualify for assistance. Disease Specific Copay Programs is a very comprehensive list of copay and other assistance programs compiled by a BP-funded site called Partnership for Prescription Assistance, aka PPArx.org.

Leslie Ramirez is an internal medicine physician and founder of Leslie’s List, which provides information that enables all patients, but especially the uninsured and underinsured, to find more affordable medications and health care services.

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• Copay Cards: Don’t Throw The Baby Out With The Bathwater (georgevanantwerp.com)
• Short Survey On Copay Cards (georgevanantwerp.com)
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Accountable care organization (ACO) and medical home differences

By Kevin Fickenscher, MD at KevinMd.com

In the great healthcare alphabet soup, it’s easy to lose sight of the differences between proposed solutions for making healthcare more efficient and effective.

Rather than tackling payment reform in isolation of care delivery, Accountable Care Organizations (ACOs) and Medical Homes offer a consolidated approach to both issues. While the models are still developing, various pilot programs are being implemented around the country….

 

Read the article

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• Post-HMO Health Care: Are ACOs the Answer? (time.com)
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Surgery as a public health intervention: common misconceptions versus the truth

 

From the Bulletin of the World Health Organization (WHO)

The world’s attention has recently been focused on the escalation of violence in north and west Africa. Daily reports of deaths and injuries from the region have raised concerns. What is missing from the picture, however, is the fact that many of these countries lack surgical capacity to treat the injured, and this inability to provide surgical care is contributing to a significant rise in the death toll. A recent World Health Organization (WHO) study found that more than 90% of deaths from injuries occur in low- and middle-income countries.1 This is not surprising, considering that the poorest third of the world’s population receives only 3.5% of the surgical operations undertaken worldwide.2 Many hospitals in these countries do not have a reliable supply of clean water, oxygen, electricity and anaesthetics, making it extremely challenging to perform even the most basic surgical operations.3

Despite such a surgical imbalance around the world, surgery is still “the neglected stepchild of global health”.4 No global funding organization focuses specifically on the provision of surgical care, and none of the major donors are willing to support and acknowledge surgery as an imperative part of global public health. This is largely due to the following common misperceptions about surgery that are not grounded in truth.

First, many people think that surgical care can only address a very limited part of the global burden of diseases and thus is of low priority. In reality, injuries kill more than five million people worldwide each year, accounting for nearly one out of every ten deaths globally…..

…Second, there is a common notion that surgical care is too expensive to be implemented as part of public health interventions. However, surgery can be remarkably cost-effective, even in comparison to non-surgical interventions that are commonly implemented as public health measures. ….

….Lastly, the focus of the global health community on the issue of surgical imbalance has been largely confined to providing short-term relief through medical missions. …

Read the entire article

Roundup and Birth Defects: Is the Public Being Kept in the Dark?

The authors of this scientific research report are from the UK, Brazil, Ireland, and the US.

From the summary

This report provides a comprehensive review ofthe peer-reviewed scientfic literature, documentingthe serious health hazards posed by glyphosate andRoundup herbicide formulations. On the basis of this evidence, we call on the Commission to cancelits delay in reviewing glyphosate and to arrange anobjective review of the pesticide. Te review musttake into account the full range of independentscientific literature, as demanded by the newpesticides regulation, and should be started as soonas the new data requirements are in place this year.In the meantime, the Commission should use itspowers to withdraw glyphosate and Roundup from the market.

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