Two articles on ways to stay healthy this flu season.
How to Care for Problem Skin in the Winter - Stay healthy - Health.com
"Because psoriasis and eczema involve immune system responses, experts believe that many bacterial, viral, or fungal infections can make them worse.
Dr. Strober recommends getting a flu shot, if your primary care physician agrees that it’s appropriate. "Ask your primary doctor, and then get it and any other vaccinations that might help you fight infection." And follow basic steps to keep yourself healthy, like washing your hands frequently, getting good sleep, and exercising."
http://slideshows.health.com/slide_shows/10312/slides/11166
14 Ways to Avoid Colds and Flu - Healthy Living - Health.com
"Are you avoiding your co-worker with that hacking cough in the cubicle next to you? Do you draw your hand back from every doorknob? Have cold-and-flu phobia? Get a grip before the grippe gets you. We’ve consulted dozens of medical experts to bring you 14 ways to avoid colds and flu this season."
http://living.health.com/2008/02/11/snuff-out-sniffles/
Tuesday, November 25, 2008
NEW!! - Caregivers page
Tonight, I created a new page for Caregivers. I will put up some links now, then add more as I find them.
If you know of any resources for vasculitis, caregivers, your specific condition, or chronic conditions in general... anything at all that might be helpful to others, then please share it with me so I can share it with them.
Thanks!
: Joseph Carpenter
Email
Albuquerque, NM
CSS Parent, Daughter DX March '08 - Celebrating seven months without vasculitis symptoms!
Central NM Chapter - Vasculitis Foundation - http://www.nmvasculitis.org
If you know of any resources for vasculitis, caregivers, your specific condition, or chronic conditions in general... anything at all that might be helpful to others, then please share it with me so I can share it with them.
Thanks!
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08 - Celebrating seven months without vasculitis symptoms!
Central NM Chapter - Vasculitis Foundation - http://www.nmvasculitis.org
Saturday, November 22, 2008
New Hampshire law bans sale of prescriber-identifiable prescription drug data
Here is one example of a privacy issue that affects your health care. The case cited below related to a New Hampshire court case where data mining companies collect data about you, in order to then selel that data to various organizations for various purposes.
Lets be clear here. Some of these purposes are legitimate. Such as when a medical researcher collects data about patients in a clinical trial to figure out what works best. Or when researchers survey the larger body of patients looking for data that may identify disease trends.
The problem comes in when personally identifiable information about specific patients is collected and then sold for purposes that have NOTHING to do with their health care. One obvious example of this is when pharmaceutical companies use this data to fine turn their pitch to your doctor, so they can convince your doctor to prescribe some drug they want to sell, regardless of whether or not it may be the best treatment for your condition.
This issue relates to collected patient identifiable information which is then sold as a database for other commercial purposes.
Health care privacy is a big issue for those who have much to gain if information is shared properly and well, and much to lose if it is shared badly and without concern for the patient.
When the drug companies put sales ahead of solutions, then we have a problem. There is a reason why drug research for hair loss, obesity and erectile disfunction get the lion's share of the research funding, and rare diseases get the leftovers. There are more people with more money to spend on those drugs, than there are patients who need cures for vasculitis.
Decisions regarding what medications you should take must come from the informed partnership between you and your doctor. if either of those parties are unduly influenced, then the decision becomes biased. Would you rather take the name brand drug, or the one that works? They are not always the same thing.
I encourage all of you to keep your ears and eyes open and support anything that promotes your well being, such as a SECURE electronic medical records system that is PATIENT FOCUSED, and not that merely benefits the insurance and pharmaceutical companies, such as we have now.
Here is the latest on the New Hampshire case.
Electronic Privacy Information Center - http://epic.org/
Court Upholds New Hampshire Prescription Privacy Law
Today, the First Circuit Court of Appeals upheld a New Hampshire law that bans the sale of prescriber-identifiable prescription drug data for marketing purposes. In August, EPIC and 16 experts in privacy and technology filed a "friend of the court" brief urging the federal appellate court to reverse a lower court ruling that delayed enforcement of the New Hampshire Prescription Confidentiality Act. The experts said the lower court should be reversed because there is a substantial privacy interest in patient data that the lower court failed to consider. The New Hampshire Attorney General also defended the law, calling pharmaceutical representatives "invisible intruder[s] in the physician's examination room." Data mining companies challenged the law, claiming that the privacy measure violated their free speech rights. For more information, see EPIC's IMS Health v. Ayotte page. (Nov. 18)
Lets be clear here. Some of these purposes are legitimate. Such as when a medical researcher collects data about patients in a clinical trial to figure out what works best. Or when researchers survey the larger body of patients looking for data that may identify disease trends.
The problem comes in when personally identifiable information about specific patients is collected and then sold for purposes that have NOTHING to do with their health care. One obvious example of this is when pharmaceutical companies use this data to fine turn their pitch to your doctor, so they can convince your doctor to prescribe some drug they want to sell, regardless of whether or not it may be the best treatment for your condition.
This issue relates to collected patient identifiable information which is then sold as a database for other commercial purposes.
Health care privacy is a big issue for those who have much to gain if information is shared properly and well, and much to lose if it is shared badly and without concern for the patient.
When the drug companies put sales ahead of solutions, then we have a problem. There is a reason why drug research for hair loss, obesity and erectile disfunction get the lion's share of the research funding, and rare diseases get the leftovers. There are more people with more money to spend on those drugs, than there are patients who need cures for vasculitis.
Decisions regarding what medications you should take must come from the informed partnership between you and your doctor. if either of those parties are unduly influenced, then the decision becomes biased. Would you rather take the name brand drug, or the one that works? They are not always the same thing.
I encourage all of you to keep your ears and eyes open and support anything that promotes your well being, such as a SECURE electronic medical records system that is PATIENT FOCUSED, and not that merely benefits the insurance and pharmaceutical companies, such as we have now.
Here is the latest on the New Hampshire case.
Electronic Privacy Information Center - http://epic.org/
Court Upholds New Hampshire Prescription Privacy Law
Today, the First Circuit Court of Appeals upheld a New Hampshire law that bans the sale of prescriber-identifiable prescription drug data for marketing purposes. In August, EPIC and 16 experts in privacy and technology filed a "friend of the court" brief urging the federal appellate court to reverse a lower court ruling that delayed enforcement of the New Hampshire Prescription Confidentiality Act. The experts said the lower court should be reversed because there is a substantial privacy interest in patient data that the lower court failed to consider. The New Hampshire Attorney General also defended the law, calling pharmaceutical representatives "invisible intruder[s] in the physician's examination room." Data mining companies challenged the law, claiming that the privacy measure violated their free speech rights. For more information, see EPIC's IMS Health v. Ayotte page. (Nov. 18)
Friday, November 21, 2008
Olympic Skater Irina Slutskaya - CSS vasculitis patient update
Irina Slutskaya too busy to think about retirement - International Herald Tribune
Irina Slutskaya too busy to think about retirement
The Associated Press
Published: November 22, 2008
While the world's best competitive figure skaters were grinding through yet another competition, Irina Slutskaya was half a world away, snowboarding in the Rocky Mountains.
"It's a different life," she said Friday with her trademark bubbly laugh. "This is just great."
The two-time world figure skating champion and Olympic medalist may not have skated competitively in almost three years, but don't call her retired.
She is, if possible, even busier now than when she was competing. She's hosting TV shows in her native Russia, and skating on a "Dancing with the Stars"-like program. She's doing some acting, and this week she came to the United States for a show that promotes heart disease awareness.
And in her favorite role of all, she's a mom. Her son, Artem, turned 1 earlier this month.
Today in Sports
Del Potro falters, and Spain pulls even in Davis Cup
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Steelers' defense controls Bengals, 27-10
"It's everything," she said of motherhood. "I want this baby for a long time, and now I'm just happy."
In every part of her life.
Slutskaya, who turns 30 in February, was one of the world's best for a decade, often battling good friend Michelle Kwan for the top spot on the podium. She had incredible athleticism, allowing her to pull off the toughest jumps — she can still do all five triples — and spins.
Her trademark was a double Biellmann, where she reached back with both hands, grabbed the blade of one skate and pulled it straight over her head, then did the same thing with the other skate.
She won a record seven European titles, and was the world champion in 2002 and 2005 — the latter after she missed a year with a heart ailment that sapped her strength and energy. She was the silver medalist at the Salt Lake City Olympics, and took the bronze four years later in Turin.
"Each moment of life is different. In those times, when I was practicing, that was an important thing for me," she said. "I took every single practice and I don't know another life. I knew I loved it."
But unlike some athletes, who find it hard to adjust when they stop competing, Slutskaya made the transition as easily as she changed costumes. Always popular, she was immediately in demand in Russia to do TV shows, theater and movies. She was part of the "Champions on Ice" tour in the United States, and did similar shows in Russia.
And having been married since 1999 to Sergei Mikheev, she knew she wanted a family.
"I can't have a baby when I was in the worlds and the Olympics," she said. "I can't do (those) two things together."
Artem looks like Sergei, Slutskaya said, though "maybe a little bit of (my) cheeks." He is already walking, has four teeth and can say a few words.
Slutskaya has taken him to the rink a few times, but he hasn't been on the ice yet.
"He just started walking!" she said. "It's too early."
Though she'll put him in skates at some point, Slutskaya said she doesn't care if her son becomes a skater like her. She wants him to try snowboarding and bicycling and swimming — all the other sports she and her husband enjoy.
Slutskaya said she tries to keep up with what's going on in competitive skating, and is disappointed Russia is still trying to find someone who can be a medals contender. Only one Russian woman advanced to the free skate at last year's world championships, and Ksenia Doronina finished 17th.
At the Cup of Russia on Friday, there were no Russians in the top five of the women's short program.
"I think that will be changing," she said. "We have a good program, and there will be good skaters."
Just don't expect her to be one of them.
While Slutskaya still skates several hours a day, she said there is nothing driving her to compete again. She's been to three Olympics and while she might not have won the gold, she was a world champion.
"I don't see the target. I don't know why I have to go there," she said. "I have almost all the titles."
Besides, she's got plenty of other things to occupy her.
She performed Wednesday night in "Skate for the Heart," a show that raises awareness for heart disease. Also starring Ekaterina Gordeeva, Rudy Galindo and musician Kenny G, the show will be broadcast on NBC on Feb. 7 as part of national heart month. It's a cause that, obviously, means a great deal to Slutskaya.
After having a high fever for several weeks in 2003, doctors found that the sac around Slutskaya's heart was inflamed. She was also later diagnosed with vasculitis, an inflammation of blood vessels that can cause major vascular organs to deteriorate.
"I really like exhibitions and I really like to skate for people," she said. "Maybe somebody will watch me and say, 'My gosh, if she fought through her illness, why should I be sitting here?'"
Monday, November 17, 2008
CNMVF website updates - new CAM info and a Health.com gadget
I am always adding things to the website. You can see what is new by looking on the left side of the page for a little box labeled: Recent Site Activity.
Normally, I leave it to you to identify the new material by simply reading the site. However, I added a few little things to the website today that bear special mentioning...
On the home page, I added a gadget labeled "Health.com Latest News and Wellness Advice Gadget." That box links to the top ten articles at Health.com, and the tabs link to even more news and wellness information. The Health.com Videos are YouTube videos, usually of a doctor, that are pretty useful if you want an overview on the selected topic. I have watched a lot of them and they are well done.
I have no control over what Health.com chooses to present, but I have been playing with with this gadget on my Just For Fun page and found enough worthwhile articles that it seems worthwhile to offer it you you folks on the home page. You will find this on the home page under the introductory text. Just scroll down a bit, you cannot miss it.
The Health.com website is just a good resource anyway. The Drug Finder and other tools are linked to commercial databases used by health care providers, and are as good as the other tools I have listed for looking up medication information. Like any other information, you should check multiple sources to confirm accuracy, eliminate the chance of bias, and also to confirm how timely any particular information is. That is why I list so many choices. You will find which is your favorite site, but I encourage you to cross check that periodically.
Plus, remember that Google is one of your health care partners. Google Health went live this year (www.google.com/health/), and "Google is the default starting point for most health searches. And people are increasingly turning to their computers and the Web for health information and advice. A Harris poll, published last month, found that 52 percent of adults sometimes or frequently go to the Web for health information, up from 29 percent in 2001. "
See: Steve Lohr, “Google and Microsoft Look to Change Health Care,” The New York Times, August 14, 2007, sec. Technology, http://www.nytimes.com/2007/08/14/technology/14healthnet.html.
I also expanded the Natural, Alternative, and Complementary Medicines section of the CNMVF Education page: http://www.nmvasculitis.org/Home/support/education. These new links provide more background information about Complementary and Alternative Medicines (CAM), as well as more resources for investigating CAM therapies BEFORE you try them.
Most vasculitis patients are already taking a pretty smashing amount medications. so it is very important to talk with your doctor AND pharmacist before altering or adding to your treatment cocktail. They need to know what you are taking, so they can factor that information into their decision making, and so they can alert you to any obvious contraindications.
Even if you and your doctor do not agree about CAM therapies, tell them what you are doing.
Do not rely on your doctor and pharmacist alone to know everything, or even to do the research. Your doctor will be familiar with his or her main treatment protocols. The computer at the pharmacy will red flag any documented reactions between medications, and the pharmacist should tell you about those as well as any real world experiential knowledge they may have. However, when you factor in supplements and other alternative products, you are wandering off the beaten path and so must take extra responsibility for your own health care. You must do some research.
I am an advocate that each patient should invest in their own medical care, and think of themselves as equal partners in the mission to improve their own health.
Good doctors are amazing, but they are not going to be able to spend the kind of time you can spend to check out every aspect of your condition. The better informed you are, the better questions you will ask your doctor, and the better your quality of care will be.
: Joseph Carpenter
Email
Albuquerque, NM
CSS Parent, Daughter DX March '08
Celebrating seven months without symptoms!
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org
Normally, I leave it to you to identify the new material by simply reading the site. However, I added a few little things to the website today that bear special mentioning...
On the home page, I added a gadget labeled "Health.com Latest News and Wellness Advice Gadget." That box links to the top ten articles at Health.com, and the tabs link to even more news and wellness information. The Health.com Videos are YouTube videos, usually of a doctor, that are pretty useful if you want an overview on the selected topic. I have watched a lot of them and they are well done.
I have no control over what Health.com chooses to present, but I have been playing with with this gadget on my Just For Fun page and found enough worthwhile articles that it seems worthwhile to offer it you you folks on the home page. You will find this on the home page under the introductory text. Just scroll down a bit, you cannot miss it.
The Health.com website is just a good resource anyway. The Drug Finder and other tools are linked to commercial databases used by health care providers, and are as good as the other tools I have listed for looking up medication information. Like any other information, you should check multiple sources to confirm accuracy, eliminate the chance of bias, and also to confirm how timely any particular information is. That is why I list so many choices. You will find which is your favorite site, but I encourage you to cross check that periodically.
Plus, remember that Google is one of your health care partners. Google Health went live this year (www.google.com/health/), and "Google is the default starting point for most health searches. And people are increasingly turning to their computers and the Web for health information and advice. A Harris poll, published last month, found that 52 percent of adults sometimes or frequently go to the Web for health information, up from 29 percent in 2001. "
See: Steve Lohr, “Google and Microsoft Look to Change Health Care,” The New York Times, August 14, 2007, sec. Technology, http://www.nytimes.com/2007/08/14/technology/14healthnet.html.
I also expanded the Natural, Alternative, and Complementary Medicines section of the CNMVF Education page: http://www.nmvasculitis.org/Home/support/education. These new links provide more background information about Complementary and Alternative Medicines (CAM), as well as more resources for investigating CAM therapies BEFORE you try them.
Most vasculitis patients are already taking a pretty smashing amount medications. so it is very important to talk with your doctor AND pharmacist before altering or adding to your treatment cocktail. They need to know what you are taking, so they can factor that information into their decision making, and so they can alert you to any obvious contraindications.
Even if you and your doctor do not agree about CAM therapies, tell them what you are doing.
Do not rely on your doctor and pharmacist alone to know everything, or even to do the research. Your doctor will be familiar with his or her main treatment protocols. The computer at the pharmacy will red flag any documented reactions between medications, and the pharmacist should tell you about those as well as any real world experiential knowledge they may have. However, when you factor in supplements and other alternative products, you are wandering off the beaten path and so must take extra responsibility for your own health care. You must do some research.
I am an advocate that each patient should invest in their own medical care, and think of themselves as equal partners in the mission to improve their own health.
Good doctors are amazing, but they are not going to be able to spend the kind of time you can spend to check out every aspect of your condition. The better informed you are, the better questions you will ask your doctor, and the better your quality of care will be.
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08
Celebrating seven months without symptoms!
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org
Friday, November 14, 2008
CNMVF Monthly Report - November 2008 Meeting
Hello all,
Joseph Carpenter here with what is cooking at the CNMVF. My full report is being sent to the CNMVF Google Group, which is our own private little listserv. You can view posts, and you can send them to the group as well from your Email account or on the web.
Who sees that Group? The same folks you can meet at a monthly chapter meeting are the same folks you might trade vasculitis "secrets" with anyway! Speaking of which... here is what is going on...
*November 2008 Chapter Meeting Summary*
We had our second meeting, which is slowly becoming a monthly event. We met on Thursday, November 13, 2008 at 6PM at the Albuquerque Grill.
I attempted to contact 22 patients from within a 70 mile radius of Albuquerque. A few had numbers that were out of service, most I left messages for, and a few I had the pleasure of talking with personally. Of those I spoke with, all were very happy to hear about the local chapter. I think the chapter meeting this past Thursday was just short notice for most people. We will meet again next month, so I hope to meet more of you then. More information about the next meeting at the end of this report.
Then you get to see the rest here... lucky you!
*Next Chapter Meeting*
This is now scheduled for December 11th at 6PM. For now I will keep that location at the Albuquerque Bar & Grill, 1015 Rio Grande Blvd. NW, Albuquerque, NM 87104. Just South of I-40 on Rio Grande Blvd. You should see an announcement in the mail sometime next week, and with luck, we will get more members to attend next time. I look forward to meeting more of you.
Well folks, it is the end of my day, and I have to go meet some people for a movie. What? You think I have no life? Ha! I say,,, Ha! :o)
Have a great weekend, and I hope to see you next month!
To view the redacted portion of this most interesting and informative report :o), you need to subscribe to the CNMVF Google Group.
: Joseph Carpenter
Joseph Carpenter
Email
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
http://www.nmvasculitis.org
*Hey! You can get this kind of news sent to you automatically in your Email
inbox.*
Just head on over to
http://groups.google.com/group/cnmvf.
Then subscribe to the CNMVF Google Group and once I approve your membership, you will be able to view a copy of the posts according to your preferences. You can get them delivered to your inbox, or you can just review them online and get no Email at all. It is up to you. You can also use that to send mail to the CNMVF Google Group yourself to ask a question of the group, or just let off some steam, whatever you think the group can help you with. If you decide to opt out later, you can do that too. I wanted to set it up this way so you can manage your privacy settings yourself.
Joseph Carpenter here with what is cooking at the CNMVF. My full report is being sent to the CNMVF Google Group, which is our own private little listserv. You can view posts, and you can send them to the group as well from your Email account or on the web.
Who sees that Group? The same folks you can meet at a monthly chapter meeting are the same folks you might trade vasculitis "secrets" with anyway! Speaking of which... here is what is going on...
*November 2008 Chapter Meeting Summary*
We had our second meeting, which is slowly becoming a monthly event. We met on Thursday, November 13, 2008 at 6PM at the Albuquerque Grill.
I attempted to contact 22 patients from within a 70 mile radius of Albuquerque. A few had numbers that were out of service, most I left messages for, and a few I had the pleasure of talking with personally. Of those I spoke with, all were very happy to hear about the local chapter. I think the chapter meeting this past Thursday was just short notice for most people. We will meet again next month, so I hope to meet more of you then. More information about the next meeting at the end of this report.
---
MORE GOOD STUFF APPEARS IN THIS SPACE IN THE FULL REPORT
Like what?
Like more details about the meeting and what we learned about one another...
Like about a form of vasculitis most of us never heard of...
Like about a *New VF Member* ...
Like about the *NM Vasculitis Doctors List*...
Like about *Pain therapy for Peripheral Neuropathy* ...
Like about *Blogging is Therapy*
Like about *Online Medical Research*
---
Then you get to see the rest here... lucky you!
*Next Chapter Meeting*
This is now scheduled for December 11th at 6PM. For now I will keep that location at the Albuquerque Bar & Grill, 1015 Rio Grande Blvd. NW, Albuquerque, NM 87104. Just South of I-40 on Rio Grande Blvd. You should see an announcement in the mail sometime next week, and with luck, we will get more members to attend next time. I look forward to meeting more of you.
Well folks, it is the end of my day, and I have to go meet some people for a movie. What? You think I have no life? Ha! I say,,, Ha! :o)
Have a great weekend, and I hope to see you next month!
To view the redacted portion of this most interesting and informative report :o), you need to subscribe to the CNMVF Google Group.
: Joseph Carpenter
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
http://www.nmvasculitis.org
*Hey! You can get this kind of news sent to you automatically in your Email
inbox.*
Just head on over to
http://groups.google.com/group/cnmvf.
Then subscribe to the CNMVF Google Group and once I approve your membership, you will be able to view a copy of the posts according to your preferences. You can get them delivered to your inbox, or you can just review them online and get no Email at all. It is up to you. You can also use that to send mail to the CNMVF Google Group yourself to ask a question of the group, or just let off some steam, whatever you think the group can help you with. If you decide to opt out later, you can do that too. I wanted to set it up this way so you can manage your privacy settings yourself.
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