Chronic illness Pain Support

Many People Don't Give Advice About Illness, Survey Says

Sometimes it can feel like everyone is giving you advice about your illness but it's actually less than half the people (or so they say...) In fact, in light of my recent blog about some personal health issues my son is experiencing I asked for prayer rather than thousands of emails of advice. Most people completely understood, but a few took total offense (of that I am sorry). I just knew as a worn-out mom with my own illness I could only handle so many emails that said, "You need to be...." or "You should have...."

The recent study also revealed that 82 percent of people acknowledge that they know someone with a chronic illness. This seems to be much higher than in the past. Part of the reason I believe is because healthy people don't realize all that the term "chronic illness" entails, such as diabetes, lupus, heart disease, arthritis, etc. Now, with more media attention, perhaps they are realizing all the this term encompasses.

I had some other comments to make on this, but just lost my whole document... so I will let the statistics speak for themselves for now. But I wonder... how can I get Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend into the hands of those 82 percent who have a friend with an illness?

Blessings,

Lisa

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Chronic Illness Often a Taboo Subject: Survey

October 11, 2007 08:40:42 PM PST

THURSDAY, Oct. 11 (HealthDay News) -- Along with taboo topics such as politics and religion, many Americans are reluctant to discuss managing a chronic illness with family or friends, according to a new survey of more than 1,000 adults.

The survey, released Oct. 11, found that 82 percent of respondents said they knew someone with a chronic illness, but only 34 percent were likely to suggest ways for this person to better manage their care. That's about the same number who said they'd debate politics (37 percent) or religion (33 percent) with a loved one or friend.

Respondents were more likely to discourage friends or loved ones from buying the wrong house (65 percent), loan them a large amount of money (56 percent), advise them against taking a job they didn't think was right for the person (48 percent), and tell them their spouse was unfaithful (41 percent).

The survey was released by Evercare, a provider of health plans for people who have chronic illnesses, are older, or have disabilities.

The reasons why many Americans are reluctant to offer advice to chronically-ill friends or family include:

• They think the person has the situation under control (66 percent); they are not a health care professional (31 percent);
• they don't want to seem like a nag (31 percent) or rude (29 percent);
• they don't believe the person would listen to them (27 percent);
• they didn't think the matter was that important (15 percent).

Other findings:

• Twenty percent of respondents said their spouse was the easiest person to give advice to about health, followed by a child (20 percent), mother (13 percent), and father (5 percent).
• Most respondents said they'd prefer to receive advice about managing a chronic illness from a health care professional (67 percent), followed by a spouse (10 percent) or parent (7 percent). Men were twice as likely as women (14 percent versus 7 percent) to have their spouse give them such advice.
• Men have an easier time offering health advice to their spouse (28 percent) than women (19 percent). Women have an easier time offering health advice to their children (24 percent) than men (16 percent).
• Thirty-four percent of respondents said the person closest to them with a chronic illness is a parent (34 percent), followed by another relative (16 percent), spouse (14 percent), friend (11 percent), sibling (8 percent), and child (6 percent).

Evercare offered tips on how to help family or friends with a chronic illness:

• Talk to them in order to get an understanding of their goals. Get the conversation started by discussing events or activities they used to enjoy or future events they want to be part of, such as a family reunion. Once you understand their goals, you can help them achieve them along with health care providers, doctors or community service agencies.
• Appoint an "ambassador" -- someone your friend or loved one feels comfortable talking with and respects enough to heed his or her advice. This person can help your friend or family member manage their condition.
• Increase your comfort levels by educating yourself about the person's chronic illness. This will make you feel more comfortable speaking with them about the condition and reinforcing the advice the patient has received from their doctors.

By 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services.

Why It's Called the 'Practice of Medicine'

My mom and I often comment, "that's why they call it practicing medicine" so this article from Daily Health News caught my attention. It has some great advice. Hope you enjoy.

Lisa

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Why It's Called the 'Practice of Medicine'

When I was growing up, people drank milk to heal their ulcers, my mother fed me a healthy breakfast of scrambled eggs, and teachers asked me to memorize the nine planets, starting with Mercury and ending with Pluto. All this was based on what we knew as science -- and the facts were the facts. Or were they? As time went on, scientists learned that ulcers were often caused by helicobacter pylori (H. pylori) bacteria and that dairy could aggravate digestive disorders. Eggs lost favor because they were a source of cholesterol, and now Pluto is not considered an official planet after all. Today, coming full circle, eggs are back on the menu, considered healthy once again.

So-called "facts" change quickly, as science is replaced by newer science. Though we are encouraged to believe that medicine is an exact science, truth be told all medical knowledge -- for that matter, all scientific knowledge -- is only the experts' best "educated guess" based on what they know today and the scientific data they currently have. As we learn more, new questions arise -- and we discover unanticipated new answers, too. Given how much information is directed at us in the area of medical knowledge and practice, how can a health-conscious consumer make the smartest choices?

SHARP ADVICE FROM AN EXPERT

For an insider's view, I turned to Jay S. Cohen, MD, www.medicationsense.com, author of several books for health care consumers, including What You Must Know About Statin Drugs & Their Natural Alternatives (Square One) and Over Dose: The Case Against the Drug Companies (Tarcher). First and foremost, Dr. Cohen said that we should always understand that what we know right now might change. As evidence, Dr. Cohen pointed out the many things we once thought were good for us that turned out to be harmful or unnecessary. Not long ago, it was common for people in the general population to have a chest X-ray to screen for tuberculosis (TB), among other things, and tonsillectomies were practically routine procedures for children prone to sore throats. As for medicines, drugs have been recalled due to their horrifying side effects, including the allergy medication terfenadine (Seldane), which caused cardiac problems... and fen-phen (fenfluramine and phentermine) and rofecoxib (Vioxx), which were responsible for many deaths. And the list goes on and on.

WHAT YOU CAN DO

When it comes to medical drugs and procedures, Dr. Cohen stresses that newer and stronger are not synonymous with better. The media loves "health breakthrough" stories, but the promise of a new treatment doesn't always deliver and the full story is not always apparent from one or two research studies (all too often sponsored by the drug companies that stand to profit by selling the breakthrough drugs and treatments). This is playing out now with regard to recent research on the outcomes of stenting in cardiac patients. (Stay tuned for an in-depth look at stenting in an upcoming issue of Daily Health News.)

Smart consumers can and should take specific precautions to reduce their risk of side effects, says Dr. Cohen. He outlined some strategies to effectively protect yourself and your loved ones in the ever-changing face of modern medicine...

• Know your doctor. All too often we choose physicians based on criteria like office hours and location, and what insurance they accept. Your doctor should also be able to explain how he/she stays current on new research, treatments and techniques. You should also feel confident that he/she sees and treats you as an individual with unique needs.
• Ask questions. Be sure you understand why a particular drug or procedure is being recommended. If you're facing a serious problem, consider bringing someone you trust to your appointment -- your own emotions can make it difficult to process what you are hearing, and also to identify which points you don't understand or want more information about.
• Find out how many times your doctor has performed the particular procedure that has been recommended. You don't want to be at the start of a learning curve -- far better to be one of many success stories.
• Get a second opinion. It's worth the peace of mind if the second specialist agrees with the first -- and if not, perhaps you will learn something important, even life-altering. One smart strategy is to seek your second opinion from a non-drug-prescribing doctor, such as a naturopath. Insurance companies often pay for second opinions, and many for naturopathic care as well.
• Be skeptical about glitzy advertising. Stay with tried-and-true solutions, rather than being swayed by new drugs hyped by celebrities on commercials and in magazine ads. Medicines that have been around for a longer period of time are often just as effective, less expensive and -- most important -- already have a history of safety, unlike the trendy and pricey new ones.
• Be familiar with how drug companies market their products. Not only are they tugging at our individual heartstrings with emotional direct-to-consumer advertising, they regularly visit doctors' offices, delivering lunch and lots of free samples. Many of these so-called new drugs are actually very similar to existing drugs (also called "me too" drugs), which may offer little or no advantage over older versions -- but earn more for the drug company. Also, the harmful effects of new drugs sometimes take years to emerge, and by that time, the damage may already have been done.
• For medical problems that are neither acute nor severe, talk to your doctor about starting low and going slow. When beginning a new treatment regimen, Dr. Cohen suggests starting with the lowest effective dose of any drug, and only graduating to higher dosages if necessary. This way, you minimize exposure to dangerous and unnecessary side effects.
• Be wary if you are given "free" samples. These generally last for only a short time, and voila -- you've been suckered into an expensive new drug regimen.
• Always weigh the benefits versus risks of all medical drugs and procedures -- especially the new ones. It's certainly true that these may be important and lifesaving, and for some people, benefits will outweigh risks. Yet for many others, benefits are minimal, and may be overshadowed by the risk of side effects. For example, a person who takes a high-dose statin drug to lower slightly elevated cholesterol may develop muscle pain, for which he/she may take an over-the-counter pain reliever, which can lead to a sour stomach (not to mention increased cardiovascular risk), which can lead to popping antacids or acid reducers/suppressants which disturb normal digestive processes, and so on. Don't get on this merry-go-round unless you really need to.
• For non-life-threatening problems, consider lifestyle change before taking drugs or undergoing invasive procedures. For example, if you have mildly elevated cholesterol or blood pressure, or have been told you have "prediabetes," you'll benefit enormously from simple measures such as a healthy diet, regular exercise, weight loss and stress management. These efforts often eliminate the need for more aggressive treatment. Dr. Cohen says that ideally, we should first address lifestyle issues, and then if necessary move on to natural interventions -- and only then to pharmaceuticals.

Bottom line: Be careful. Be skeptical. Do your homework, and take charge of protecting yourself, first and foremost. There's a reason why doctors are said to "practice" medicine.

Source(s):

Jay S. Cohen, MD, associate professor (voluntary) of family and preventive medicine, University of California, San Diego. Dr. Cohen is author of What You Must Know About Statin Drugs & Their Natural Alternatives (Square One), and Over Dose: The Case Against the Drug Companies (Tarcher). Visit his Web site at www.medicationsense.com.

In Sickness and in Health Blog for Couples

Blog that helps Couples Coping with Chronis Pain and Illness: In Sickness and In Health

The following is reprinted from the blog of "Portals and KM" but I checked out the blog and thought it well-worth sharing with you...

Lisa

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Barbara Kivowitz, has started a very worthwhile blog, In Sickness and In Health, that is "a place for couples going though an illness experience - to find resources and advice, hear stories, and discover support. Whether the illness is chronic or acute, the result of disease or accident, couples can learn strategies for coping with the changes illness brings into our relationships and our worlds.” This should be a valuable source for those facing these issues and those who help couples with these issues. I found some interesting posts with actual stories of other couples such as A Story about Chronic Pain & Relationship: Barbara and Richard and A Story about Alzheimers: Paul and Mary. These stories are attaching some useful comments that add to the conversation. I am impressed with the degree of commentary that this new blog has already received. It demonstrates the need for more conversation on this topic and how blogs can help to extend this conversation.

In addition to her personal experiences, Barbara brings a lot to the blog through her work as a psychotherapist and a business consultant. She is now writing a book on this topic.

See here for In Sickness and in Health

The following is reprinted from the blog of "Portals and KM" but I checked out the blog and thought it well-worth sharing with you...

Lisa

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Barbara Kivowitz, has started a very worthwhile blog, In Sickness and In Health, that is "a place for couples going though an illness experience - to find resources and advice, hear stories, and discover support. Whether the illness is chronic or acute, the result of disease or accident, couples can learn strategies for coping with the changes illness brings into our relationships and our worlds.” This should be a valuable source for those facing these issues and those who help couples with these issues. I found some interesting posts with actual stories of other couples such as A Story about Chronic Pain & Relationship: Barbara and Richard and A Story about Alzheimers: Paul and Mary. These stories are attaching some useful comments that add to the conversation. I am impressed with the degree of commentary that this new blog has already received. It demonstrates the need for more conversation on this topic and how blogs can help to extend this conversation.

In addition to her personal experiences, Barbara brings a lot to the blog through her work as a psychotherapist and a business consultant. She is now writing a book on this topic.

See here for In Sickness and in Health

Managing Pain Well Helps Mental Health Too

I see a lot of articles on chronic pain and the emotional impact, but I thought this particular one was done exceptionally well.

Thumbs up to:

• As the murky link between chronic pain and mental health becomes better understood, more health-care professionals are rethinking how they treat chronic pain.
• One of the challenges, he said, is encouraging some of his clients not to victimize themselves.
• "One thing we can control is how we react to things, how we react to stressors," Diener said. "Pain is just one of those stressors. Life isn't about how much you're suffering."

For all of us who feel like the medical industry is far behind in their understanding of what chronic pain can do to your mental health, it's nice to be reminded that there are those who understand and who are getting media attention to further educate others.

Lisa

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Managing all pain

Experts advise that treatment of chronic conditions include addressing physical and emotional aspectsBy TIFFANY ARNOLD

Clinical psychologist Amy Fox says that for her patients, chronic pain sufferers, the pain affects more than just their bodies. Their pain also effects their minds.

As the murky link between chronic pain and mental health becomes better understood, more health-care professionals are rethinking how they treat chronic pain.

There is evidence that treating the mental-health issues tied to pervasive pain can actually reduce suffering from pain, said Fox, a clinical psychologist for Washington County Hospital's Behavioral Health Services.

The problem, health care professionals said, is that pain and mental health are often compartmentalized as separate medical issues.

For chronic pain sufferers, the path to self-sufficiency involves the adoption of a pain-management routine that addresses both the mental and physical aspects of pain.

"This involves much more than giving a medication," said Dr. Jerome Kurent, professor of medicine and neurology at the Medical University of South Carolina.

Kurent, who is also the former chair of the American Academy of Neurology's pain and palliative care division, said a combination of doctors, mental therapists and physical therapists should be involved in the patient's treatment.

The psychology of pain

There are two kinds of pain: acute and chronic.

The incidence of acute pain is a straight-forward process. If you cut your finger or break your leg, nerves in the body send signals to the brain, which interprets the signals as pain.

Treatment can get rid of acute pain for good, whether it stems from a cut finger or a broken leg.

But chronic pain is essentially permanent. It doesn't go away.

Over time, the presence of chronic pain can become part of the brain's "hard wiring," Kurent said.

When that happens, the experience of chronic pain becomes the norm, making it harder to treat and making the sufferer more prone to mental-health issues such as depression.

Kurent said neurologists know very little about the process, but they do know that there is a tangible link between mental health and pain.

The way we perceive pain

One challenge, Fox said, is helping people with chronic pain accept that while their suffering due to pain can be diminished, their pain might not ever go away entirely.

Such news usually evokes two kinds of reactions from patients, Fox said.

"Thinking 'That can't be true. I can be fixed, I'm still useful' or thinking 'I can't be fixed, I can't do anything. I'm no longer useful,'" she said.

Fox said she tries to present chronic pain much the same way other chronic illnesses, such as diabetes, might be presented.

"They're able to learn to live with the illness," she said. "It's about realizing life goes on."

Fox said she helps her patients learn how to control their suffering from pain through mental imagery and breathing exercises. Prescribed medication and alternative medicine such as yoga and massage therapy might also help, Fox said.

Ryan Diener, founder of Holistic Health Associates in Frederick, Md., said nearly half of the 35 to 40 patients he sees a week are chronic pain sufferers.

One of the challenges, he said, is encouraging some of his clients not to victimize themselves.

"One thing we can control is how we react to things, how we react to stressors," Diener said. "Pain is just one of those stressors. Life isn't about how much you're suffering."

Can we transcend chronic pain?

Whether or not people are capable of transcending chronic pain depends on whom you ask.

Diener said he's seen clients' suffering due to pain diminish over time. But it's not something that happens overnight, and he said there's no one-size-fits-all solution to pain management.

Linda Potts, owner of Healing Waters Wellness Center in Smithsburg, is convinced chronic pain can be diminished.

Years ago Potts was diagnosed with fibromyalgia, chronic fatigue syndrome and Lyme disease. She was told that she might have to live with pain for the rest of her life.

"That's not easy to take," said Potts, a registered nurse who used to work in emergency rooms. "I didn't accept it. That's why I started looking for other options."

She said alternative medicine such as homeopathy and acupuncture alleviated her pain. Her experience prompted her to open the Healing Waters Wellness Center, which offers alternative treatments, in January 2006.

Susan West had a similar story. She too was a chronic pain sufferer.

"The pain is with you 24 hours a day. Your life revolves around the pain," West said.

Then she tried acupuncture in the late 1980s.

"I pretty well had the gambit done for me in Western medicine," West said of what it was like before she tried acupuncture. "I was amazed."

West is now an acupuncturist and specializes in other aspects of Chinese medicine, operating out of her business, Acupuncture Associates in Hagerstown.

West and Potts said they occasionally have bouts with pain, but they say they aim to offer people relief from their suffering.

Source: Hagerstown Morning Herald

Seeking Patients' Perspectives on Pain for Journal Article

Trisha, an RN with chronic migraine and occipital neuralgia, is seeking patient input for an article for she is writing for a nursing journal. Her focus is patients' perspectives on chronic pain and what their health care experiences have been. She says...

The reason I want to write this article is because after almost two years on the other side of the fence, so to speak, it's become glaringly obvious that there is a need for the healthcare community to hear first-hand how it feels to be treated with discrimination simply because you have a disability that isn't visible to the naked eye. Being refused treatment in the ER, being accused of drug-seeking behavior, and not having access to adequate pain relief complicates the issues at hand and may, in fact, make the pain and suffering we face worse than it already is. Chronic pain sufferers deserve just as much respect and dignity in treatment situations as any other person with a disabling disorder.

Kerrie of Thedailyheadache.com says, "Trisha has created a questionnaire for patients who would like to contribute. She asks many questions, but  many only require short answers. More importantly, they are questions that anyone with chronic illness should think about. Your responses will help you better understand your headache history and the impact of illness on your life. Think of it as self-administered therapy."

Chronic Pain Questionnaire
I have a questionnaire I'd like to get as many people to fill out **realistically and kindly** as possible in order to base the article on as wide a reference base as I can reach and get responses from. If you're interested, please fill this out and email it back to me by September 1.

Thank you in advance for taking the time to fill out this questionnaire. Please note that doing so gives me permission to use this information, in context, in an article or articles having to do with chronic pain and associated issues. If you prefer not to answer a question or two, please put N/A in that spot so I know you didn't overlook it. I appreciate your input.

1. What is your diagnosis?
2. How long have you been ill?
3. What would you say is the attitude of society today toward people with chronic pain issues?
4. What is your biggest struggle in day-to-day life?
5. If you could say one thing to the healthcare community, what would it be?
6. In your opinion, what is the biggest obstacle to receiving quality care and pain control?
7. Do you feel your pain relief needs are adequately met?
8. How many doctors did you have to see before you found one willing to treat your pain in an effective manner, if you have found one at this point in time?
9. Do you feel that chronic pain sufferers are seen as people with legitimate complaints?
10. Does the use of illegally-obtained medication by high-profile individuals negatively impact the chronic pain patient seeking relief today?
11. What would you tell society about your situation if you were given the opportunity?
12. Do you believe there is a medication that, if made available to you in the correct dosage, would assist you in living a more pain-free life?
13. Do you feel that chronic pain sufferers face discrimination when applying for Social Security Disability?
14. Do you feel that chronic pain sufferers face discrimination in the workplace?
15. How has your quality of life been affected since you became ill?
16. Have you ever been refused treatment or accused of drug-seeking behavior in an emergency room setting when you've gone to one while in intense pain?
17. Have you ever been told that your pain is all in your head?
18. Does your pain significantly impact what you can do on a day to day basis?
19. Have you lost your job or livelihood because of chronic pain?
20. Has your family situation changed because of chronic pain?
21. Have you lost friends because of chronic pain?
22. Do you need help doing things that you used to be able to do independently because of your pain?
23. Does your pain cause you to say or do things that embarrass you?
24. Are you being treated for depression or anxiety due to chronic pain?
25. Do you often pretend to feel better than you actually do in order to avoid uncomfortable situations or comments?
26. What modifications have you had to make to your home to accommodate your chronic pain?
27. Do you take narcotics for your pain?
28. Do you take anti-seizure medications for your pain?
29. Do you have trouble sleeping? 30. Do you have trouble concentrating?
30. Do you have trouble staying awake?
31. Are you able to exercise on a regular basis?
32. Have you gained weight since you became ill?
33. Have you lost the ability to enjoy the things you used to look forward to?
34. Have you had to change careers or cut back on your work hours due to chronic pain?
35. Do you feel like people avoid you because you are ill?
36. Do you see a pain management specialist?
37. If so, is this sufficient for pain control or relief?
38. Do you feel that people with invisible disabilities are looked at differently than people with obvious physical handicaps?
39. Is there anything else you'd like to say?
40. Please provide your first name and last initial or a believable pseudonym I can use:
41. Just for statistical purposes, can I please have your gender and age? You don't have to answer this one, but it would assist with data groupings.

The reason I want to write this article is because after almost two years on the other side of the fence, so to speak, it's become glaringly obvious that there is a need for the healthcare community to hear first-hand how it feels to be treated with discrimination simply because you have a disability that isn't visible to the naked eye. Being refused treatment in the ER, being accused of drug-seeking behavior, and not having access to adequate pain relief complicates the issues at hand and may, in fact, make the pain and suffering we face worse than it already is. Chronic pain sufferers deserve just as much respect and dignity in treatment situations as any other person with a disabling disorder.

Kerrie of Thedailyheadache.com says, "Trisha has created a questionnaire for patients who would like to contribute. She asks many questions, but  many only require short answers. More importantly, they are questions that anyone with chronic illness should think about. Your responses will help you better understand your headache history and the impact of illness on your life. Think of it as self-administered therapy."

Chronic Pain Questionnaire
I have a questionnaire I'd like to get as many people to fill out **realistically and kindly** as possible in order to base the article on as wide a reference base as I can reach and get responses from. If you're interested, please fill this out and email it back to me by September 1.

Thank you in advance for taking the time to fill out this questionnaire. Please note that doing so gives me permission to use this information, in context, in an article or articles having to do with chronic pain and associated issues. If you prefer not to answer a question or two, please put N/A in that spot so I know you didn't overlook it. I appreciate your input.

1. What is your diagnosis?
2. How long have you been ill?
3. What would you say is the attitude of society today toward people with chronic pain issues?
4. What is your biggest struggle in day-to-day life?
5. If you could say one thing to the healthcare community, what would it be?
6. In your opinion, what is the biggest obstacle to receiving quality care and pain control?
7. Do you feel your pain relief needs are adequately met?
8. How many doctors did you have to see before you found one willing to treat your pain in an effective manner, if you have found one at this point in time?
9. Do you feel that chronic pain sufferers are seen as people with legitimate complaints?
10. Does the use of illegally-obtained medication by high-profile individuals negatively impact the chronic pain patient seeking relief today?
11. What would you tell society about your situation if you were given the opportunity?
12. Do you believe there is a medication that, if made available to you in the correct dosage, would assist you in living a more pain-free life?
13. Do you feel that chronic pain sufferers face discrimination when applying for Social Security Disability?
14. Do you feel that chronic pain sufferers face discrimination in the workplace?
15. How has your quality of life been affected since you became ill?
16. Have you ever been refused treatment or accused of drug-seeking behavior in an emergency room setting when you've gone to one while in intense pain?
17. Have you ever been told that your pain is all in your head?
18. Does your pain significantly impact what you can do on a day to day basis?
19. Have you lost your job or livelihood because of chronic pain?
20. Has your family situation changed because of chronic pain?
21. Have you lost friends because of chronic pain?
22. Do you need help doing things that you used to be able to do independently because of your pain?
23. Does your pain cause you to say or do things that embarrass you?
24. Are you being treated for depression or anxiety due to chronic pain?
25. Do you often pretend to feel better than you actually do in order to avoid uncomfortable situations or comments?
26. What modifications have you had to make to your home to accommodate your chronic pain?
27. Do you take narcotics for your pain?
28. Do you take anti-seizure medications for your pain?
29. Do you have trouble sleeping? 30. Do you have trouble concentrating?
30. Do you have trouble staying awake?
31. Are you able to exercise on a regular basis?
32. Have you gained weight since you became ill?
33. Have you lost the ability to enjoy the things you used to look forward to?
34. Have you had to change careers or cut back on your work hours due to chronic pain?
35. Do you feel like people avoid you because you are ill?
36. Do you see a pain management specialist?
37. If so, is this sufficient for pain control or relief?
38. Do you feel that people with invisible disabilities are looked at differently than people with obvious physical handicaps?
39. Is there anything else you'd like to say?
40. Please provide your first name and last initial or a believable pseudonym I can use:
41. Just for statistical purposes, can I please have your gender and age? You don't have to answer this one, but it would assist with data groupings.

Parade Magazine Editor Shares About Living w/ Diabetes

I can't think of anyone who hasn't at least heard of Parade Magazine, the magazine that is included with most Sunday newspapers. Meet Fran Carpentier who is the Senior Editor for Parade. Not only does she originate story ideas, assign writers, and coordinate two of the magazine’s most popular annual issues — “What America Eats” and “Live Longer, Better, Wiser”-- but she lives with Type 1 Diabetes.

This video above shows a glimpse into her daily routine. I thought the video was enlightening because I've watched my own mom juggle her diabetes while being the Registrar for a university law school in Oregon. People around you don't always understand that you NEED TO EAT NOW! Or that you can be watching every morsel you put into your mouth to try to lose weight and suddenly your blood sugar drops and you need to find something like raisins FAST.

Doctors tell you to "lower your stress" and yet, your job is packed full of it. You race home to get in 60 minutes of walking around your neighborhood for exercise, you drop a few pounds, your put on a new medication and the pounds you've lost (and then some) come right back on. Very frustrating!

If you live with diabetes, you may find some comfort in knowing other people go through this same routine. I hope to be able to track down a way to contact Fran soon to see if she would be interested in learning more about National Invisible Chronic Illness Awareness Week. Not only does she "talk the talk" at work each day--but she's definitely "walking that walk."

Lisa

Finding Answers Online in Sickness and in Health

It comes as no surprise to us that using the Internet for health-related, or illness-related information is a good thing. But studies like the one below continue to reinforce this. I believe this too is "a good thing." The more information we have, the more likely we are to be involved in our health and be a good advocate for it, asking questions, feeling like we have a better understanding of our illness, and knowing when to speak up--loudly some times.

Finding information on the web for your healthcare can mean anything from logging on to major health forums to find out what symptoms other people are experiencing, or going to large medical web sites like WebMD to learn more about managing our illness.

Just be sure to check the source of health information!

Another study done by Pew International Most internet users start at a general search engine when researching health and medical advice online. Just 15% of health seekers say they "always" check the source and date of the health information they find online, while another 10% say they do so "most of the time." Fully three-quarters of health seekers say they check the source and date "only sometimes","hardly ever," or "never," which translates to about 85 million Americans gathering health advice online without consistently examining the quality indicators of the information they find. (See study here.)

Having Internet "Alerts" through something Google Alers is also a way to be informed when articles or other pertinent information is available.

For example, magazine on your newstand today is the annual BEST HOSPTIAL issue, which features the best hospital for dozens of conditions. About half the magazine also feature articles to make your hospital stay comfortable and safe-- from your first in-take trip to your check out time. It has many articles on topics such as why a caregiver should be present with you all the time ("Hey, just what is in that I.V. you're giving my husband?"), why they ask for your name, birthdate and what surgery you are having until you are ready to bang your head against a gurney, to understanding your hospital bill (what are all those odd charges?)

Without the Internet, I may not have known this issue of magazine was available on the newstands until it was passed. And it's one worth saving!

Blessings,

Lisa

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Finding Answers Online in Sickness and in Health

5/2/2006 | | Mary Madden, Susannah Fox 

Recent research from the Pew Internet & American Life Project shows that, as more Americans come online, more rely on the internet for important health information. Many Americans are deepening their connections to the internet, whether for entertainment or to help a loved one through a crisis. And though the audience for the latest DVD may be larger than the audience for clinical trial information, the impact on someone's life in the latter case may be dramatically different in scale. Fully 58% of those who found the internet to be crucial or important during a loved one's recent health crisis say the single most important source of information was something they found online. Source

Mrs. Indiana Has Lupus - Shares Story

Thought some of you may find this article interesting... Nice to know that the media IS interested in people thriving despite living with an illness.

Lisa

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Wabash Valley woman fights off effects of lupus to claim crown

By Laura Followell
The Tribune-Star

FAIRBANKS — While sitting in a hospital bed one night feeling lonely and depressed, she decided she wasn’t going to feel sorry for herself anymore.

Tara Tate has since overcome the mental strife often associated with the chronic, inflammatory disease known as Lupus, from which she suffers.

“It has taken a lot of hard work, but I wouldn’t let it get in my way. I’ve come to this point in my life,” she said.

With a lot of determination, she has been named Mrs. Indiana and is seeking the national crown in the Fifth Annual Mrs. America Queen Pageant from Aug. 1-5 in Daytona Beach, Fla.

“I feel so proud to be able to do this, to be Mrs. Indiana,” she said.

While maintaining a graceful battle with Lupus, Tate also is helping others. She uses Lupus as her platform, but life hasn’t always been glamorous for Tate.

During past Lupus exacerbations, or flare ups, pain was her life, and at one point Lupus had stripped Tate from any self-confidence.

She has to take steroid medication in order to treat the disease.

Medications combined with hospitalization triggered weight gain, some 28 pounds in two weeks, she said.

She gets severely swollen joints and the pain is sometimes so intense it causes her to become nauseous, incapacitating her.

Lupus is a chronic, autoimmune disease that causes inflammation and tissue damage to cells and organs, according to the Lupus Foundation’s Web site, www.lupus.org. It affects the skin, joints, blood, heart, kidneys, lungs and brain.

Tate, who was diagnosed with Lupus in 2000, described it as her body’s defense mechanism turning itself on and attacking tissues, cells and organs.

“It’s different for everybody,” she said.

The disease often exhausts her with “major fatigue.”

Through the torment, Tate, 33, just wants to get back to life as she knows it: life as a mother of three; vibrant wife, for 12 years; spokeswoman and role model.

“It was a gradual thing. It was me deciding I’ve got to figure this thing out. How am I going to live each day of my life? I wanted more out of life than what I was getting at the time,” she said.

Tate of Fairbanks surrounds herself with an uplifting environment and maintains a positive outlook on life.

“… You have to learn to live with it,” she said. “You can’t live the life you used to live.”

While surfing the Internet one day, Tate discovered a pageant Web site that sparked a flame she thought had gone out long ago.

The once Ms. Indiana Teen was back in action and had acquired certification for pageant judging in January.

Tate started calling organizations that needed help with pageant judging, and she has been busy since.

She discovered the Dream Girls USA pageant organization, for which she serves as the Indiana director.

Through Dream Girls, she met the executive director for the national competition who, along with another member, nominated Tate to compete for Mrs. Indiana in the June 10 competition.

“I thought, there’s no way I could walk in high heels,” she said. “I didn’t expect anything. … The only thing that made me nervous was the fact that I had Lupus.”

A flare up can come on at anytime as Tate once awoke to a 103-degree fever, she said.

“That’s a big fear with Lupus, you never know what tomorrow will bring,” Tate said.

After winning Mrs. Indiana contest, she knew what she could do.

“I’m going to be a very good role model for anyone, but particularly for anyone with a chronic illness,” she said. “I’m going to be able to inspire people to do things they might think is not possible.”

Pageants are more than just wearing a crown, Tate said. As a pageant judge, Tate advocates community service, being a role model and good public speaker.

“I tell my girls, ‘you don’t just wear your crown, you work it,’” she said.

Tate’s husband, Chris, has been a positive influence in her life. He has taken care of their kids while she cannot.

During the early stages of her diagnosis, Chris, said life was a nightmare.

“Tara has the illness, but we all carry the burden,” he said.

Chris said he’s inspired by his wife’s perseverance, and he’s ecstatic about her accomplishments.

Mostly, he said, “She is a wonderful person to represent the state of Indiana for Mrs. America. She deserves it as much as anyone else. She’s worked hard to get to this point, and I know she will shine.”

Helping a Spouse with a Chronic Illness

Thought I would share this article! It's always nice to see this in the news.
Lisa

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Helping A Spouse With A Chronic Illness, Advice From AARP: Studies Show That Spousal Support Is Important In Managing An Illness - CBS News

May 24, 2007

Gabrielle Redford, features editor of AARP: The Magazine, with Julie Chen on The Early Show Thursday (CBS/The Early Show)

WHAT DO YOU THINK?

Do you have a close friend or relative with a chronic illness? Any care-giving tips to share?

Go To Comments

(CBS) The statistics are daunting:
90 million Americans suffer from a chronic illness:

90% of senior citizens have one chronic disease

77% of senior citizens have two or more chronic diseases

As of May, 2007, approximately 638,515 people have died from chronic disease this year (Chronic illnesses include diabetes, heart disease, arthritis, asthma or COPD, etc).
Chronic illness will touch many lives in the coming year, and, according to Gabrielle Redford, features editor of AARP: The Magazine, there's a strong link between having the support of a spouse or significant other and successful control of the chronic ailment.

When a chronic illness is diagnosed, she said during a visit to The Early Show, it means a lifestyle change not only for the patient, but for those closest to him or her. "First you go through having the experience of the illness..." Read More

Official Google Blog: Health care information matters

If you are receiving this it's likely because you are using the internet in some capacity to cope with a medical condition or find out more information about it. I was glad to recently read here (see below) that even Google has acknowledged how vital the area of health information on the Internet it. When the internet first started being used by the average consumer in the 1990s, a large portion of the searches had to do with health.

Now it seems knowing what Paris Hilton has done or how she is feeling is more vital to the average internet user (Traumatize--if you read the news yesterday--which was considered "news."--Ack!)

We've yet to see how Google will develop tools to help us with our health issues, records, symptoms and more.But I don't doubt that if anyone can do it--Google can! And as the internet grows in popularity among the 50-60 year-olds, it will become not only a convenient tool, but a smart financial one too. Because the need for quality information, along wth quality, screened advertisers, is desperately needed.

Blessings,

Lisa

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Link: Official Google Blog: Health care information matters- click to read more

Health care information matters

Posted by Adam Bosworth, Vice President At Google

We often get questions about what we're doing in the area of health. I have been interested in the issues of health care and health information for a while. It is now one of my main focuses here, and I've decided to start posting about it. I've been motivated in this field in part by my personal experiences helping to care for my mother, who recently died from cancer after a four-year battle. While the quality of the medical care my mother received was extraordinary, I saw firsthand how challenged the health care system was in supporting caregivers and communicating between different medical organizations. The system didn't fail completely, but struggled with these phases: What was wrong -- it took her doctors nine months to correctly identify an illness which had classic symptoms Who should treat her -- there was no easy way to figure out who were the best local physicians and caregivers, which ones were covered by her insurance, and how we could get them to agree to treat her Once she was treated, she had a chronic illness, and needed ongoing care and coordinated nursing and monitoring, particularly once her illness recurred Once she had a correct diagnosis and we'd found the right...