Thursday, October 30, 2008

New Bloggers with MS

I've recently discovered some new MS bloggers out there in the blogosphere.  Enjoy.

Marie blogs at Nourish and has been telling her Journey to MS diagnosis.

Rich blogs at Everyone Here is Jim Dandy.  One of his writings appeared in the Carnival of MS Bloggers #1 back in January 2008.

Please welcome these folks to the MS blogosphere.

Wednesday, October 29, 2008

Change Is Coming - But Maybe Not Where You Expected

Thanks Sid for turning me onto this new Campaign. The Hope of this Country is in the Next Generation.

Who is Generation We?
Millennials are the largest generation in American history. Born between 1978 and 2000, they are 95 million strong, compared to 78 million Baby Boomers. They are independent—politically, socially, and philosophically—and they are spearheading a period of sweeping change in America and around the world. No one knows the Millennials like Eric Greenberg. In Generation We, Greenberg explains the emerging power of the Millennial Generation, shows how they (and their supporters from other generations) are poised to change our nation and our world for the better, and lays out a powerful plan for progressive change that today's youth is ready to implement.

Visit for more information.

Generation WE: The Movement Begins... from Generation We on Vimeo.

Tuesday, October 28, 2008

Speak Up!! Make Your Voice Heard!!

From October 27, 2008 through November 3, 2008, you have a unique opportunity to make your voice heard on health information privacy issues, their impact on the Health 2.0 movement, and how best to build public trust in these technologies.  (hat tip to: The Health Care Blog)

They are seeking to gather feedback from the public on the important privacy issues that confront all of us as we promote the movement to e-health. A report will be generated based on the responses, so it is important that a broad range of stakeholders participate. Go to to find out more and to log on!

About The National Dialogue:

In late October, just before a critical presidential election, citizens and stakeholders around the nation will join a unique experiment in 21st century democracy. The National Academy of Public Administration, on behalf of the Federal CIO Council, the Office of Management and Budget, and the General Services Administration, will host an online national dialogue that demonstrates a fundamentally different approach to the work of government.

This national discussion will engage a diverse group of voices in tackling one of the key issues confronting the nation's health care system: How can we use information technology to improve the way patients interact with the healthcare system, while safeguarding their right to privacy? Participants will have an opportunity to discuss challenges, generate breakthrough ideas, and recommend principles that will be presented to the next Administration.

How can I participate in the National Discussion?
The National Discussion is open to everyone. It's easy to submit and rank ideas. To learn more, please read our tutorial on using this site.

How will my participation in the National Discussion make a difference?
The National Discussion will produce concrete, actionable suggestions for government leaders. A panel of Fellows from the National Academy of Public Administration will distill the results of this dialogue into a report that captures “citizen-centric” recommendations. The report will be presented to the transition team for the new Administration, as well as OMB, the United States General Services Administration, the Federal CIO Council, and other relevant Federal agencies.

Who is hosting the National Discussion?
The National Discussion on Health Information Technology and Privacy is being hosted by the National Academy of Public Administration, in partnership with AmericaSpeaks and Delib. Established in 1967 and chartered by Congress, the National Academy is a non-profit, non-partisan coalition of top public management and organizational leaders who tackle the nation's most critical and complex challenges. As the home of The Collaboration Project, the National Academy is uniquely positioned to host this discussion. We are proud to be working in partnership with AmericaSpeaks and Delib, non-partisan experts in online and face-to-face citizen engagement and public deliberation.

For more information, contact the National Academy of Public Administration

I'm going to speak up, will you join me?

Sunday, October 26, 2008

Carnival of MS Bloggers #22 - Election Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Election Edition

Ushering our Daughters into the White House
from Breaking the Dress Code

One of the most memorable things that was said during the campaigning this year was when Hillary was speaking at the convention and she said that her mother was born before women had the right to vote but that this year her daughter had voted for her mother for President. That really struck a cord for me. We’ve come so far and we’re getting so close. Puddin’ and I early voted earlier in the week, and in four years we’ll go again and take FuzzyHead with us. This is one of the many traditions that I’m proud to be passing down to my daughters.

While I don't agree on all issues with Senator Obama; I agree on most. He has my vote because he is cool, calm, and collected. THAT is the hand I want shaking hands with our allies, reaching out to our enemies, saluting our troops, holding our nuclear weapon codes, and raised in oath to carry out the duties of the President of the United States of America.

Political Signs
by Serina

I’ve seen McCain/Palin Signs around, and while they definately aren’t my choice, I would never physically ever take someone’s sign out of their yard, or do anything to disfigure it. The beauty of this country is that we have freedom of speech and the freedom to express our opinions, and everyone is allowed their opinion.

That being said, I have seen a few different signs around town that have been disfigured.. and I kind of wonder what “Political Sign” that the disfigurement represents. Personally I would not want to be part of a group that did that sort of thing. I hope its not a “Sign” of our times, or a “Sign” that people think they did something cool by defacing other’s property. All it does when I see that kind of thing, is make me think of what a small mind the person who did it must have…

Palin Campaign Rally 
by Word Salads

This is the Palin Rally we all attended early Monday morning! Here is Sarah and Piper, they were only a few feet from us!

Whoo hooo!

My first Rally!!!!

Hank Williams, Jr. reached out and shook my hand! WHOOT!

Your vote for McCain is a vote against me
says Nina at Planning the Unpredictable

My family and some friends read this blog so I urge those thinking about voting for McCain to think again. The Wall Street Journal had an article on Monday about McCain’s ideas on how to change the health insurance market. Here are the points made in the article:

McCain’s Plan

McCain’s health plan would cover 5 million Americans.
McCain’s health plan would cost 1.3 trillion dollars.

McCain wants less regulation, here is a direct quote from a paper he wrote:

"Opening up the health insurance market to more vigorous nationwide competition, as we have done over the last decade in banking, would provide more choices of innovative products less burdened by the worst excesses of state-based regulation."

McCain would start taxing your employer sponsored health insurance plan. Let’s say your company spends 10,000 a year on your health insurance. McCain would charge the employee income tax on that 10,000. The cause and effect of this is unknown but the belief is young, healthy employees would pass on the employer sponsored plan and go for a cheaper private plan. This would leave employers with older and high risk (me) employees on their plan. This might cause employers to end their health insurance plans due to high costs.

McCain’s solution for the above situation is to over a high risk plan for the broken (actually they already have this) but it is very pricey and the benefits are horrible. There is a good change my medication would NOT be covered under such plan.

McCain would over a tax credit to individuals of 2,500 and 5,000 for families in order to purchase private insurance. I have been self insured before and it was 400 a month with no drug coverage. I would NOT be able to afford the 2,000 a month for Copaxone. The chances of a private insurance company actually insuring me is pretty small anyway. Pre-existing conditions would prevent me from qualifying. I probably have 2-3 different conditions… obesity, MS and thyroid issues.

Obama’s Plan

Obama’s health plan would cover 34 million Americans.
Obama’s health plan would cost 1.6 trillion dollars.

Obama’s plan would be regulated by the government.

He would create a new government-run plan as well as an “exchange” in which private companies would offer insurance to compete with the government plan. New rules would require that insurance companies provide coverage to everyone, at consistent prices, even those with existing ailments. Parents would be required to cover their children, and large employers would be required to cover their workers or pay a fine.

Obama’s plan would regulate the benefits so that minimum standard would be set up. Additional benefits would be offered at a higher premium.

Obama’s plan would most likely require companies to offer these benefits to their employees.


Are either plan perfect? No, of course not. Is Obama’s plan a step in the right direction? YES! McCain’s is going in the WRONG direction! The tax to the health insurance benefit will effect millions of American families that can’t afford it. The cost of McCain’s plan will keep increasing along with the number of uninsured. Yes, it’s pricey but everyone should be able to see a doctor and have basic coverage. That is why I am voting for Obama.

Because we have universal health care in this country we often don't think about what an illness can do to families financially. This is much more evident in the US but it does affect Canadians as well.

My mother was quite ill when she was pregnant with me. I wasn't a very good guest apparently. As a result of not being able to keep anything down and the threat of miscarriage a few times, when mom went into labour, the specialists were called in to help with the delivery and to care for what they thought was to be a tiny baby. The minute I was born, they wheeled the incubator out of the room and the specialists all started to leave. Mom asked where everyone was going. She was told they weren't needed as I was big and healthy (and screaming), at 7 pounds, 14 ounces.

My father is fond of reminding me it took them 3 years to pay for my birth because of the precautions needed and the specialists required to be there. I never understood that statement until I was a teenager and learned about our health care system. Canada has only had universal health care since the mid '60s (I was born in '63). Yes, they had insurance, but that only covers so much. My parents have been adamant over the years that I have insurance for everything, and I do.

I have been a consumer of health care since before I was born. All the usual childhood diseases, tonsils came out at 10, occasional trips to emergency for sprains, stitches, etc., regular doctor visits (they now call them "well woman" visits instead of paps), irregular doctor visits for severe colds or flus, MS onset and diagnosis and most recently my surgery for ovarian cysts (I can't imagine the costs associated with that whole experience).

If I added the costs of my health care together, I'm sure I'd be at the million dollar mark by now. But it has basically only cost me parking. And the occasional over the counter medicine.

When the MS diagnosis came along, I signed up for the Avonex drug study. For the duration of the study, the drug company, Avonex was going to cover the costs associated with the study: MRIs, blood work, etc. That was for almost two years. Then after the study, my insurance at work covered the prescription. But it would only do so for two years. This was in the midst of lobbying the various provincial governments to cover the enormous expense of the DMDs. Nova Scotia came on board with the plan around that time along with New Brunswick a few years later and eventually Newfoundland and Labrador. The rest of the country had already covered the drugs.

I get my prescription for Avonex filled every three months. I call the hospital pharmacy, give them my ID number and go pick it up the next day. They send me a bill for $9.54 for "dispensing fees" or some such thing and that's it. So for about $40 a year and parking I get Avonex. In September it will be 9 years that I've been on this drug. Since diagnosis I haven't missed any work because of MS. I have worked full time for the past 8 years (I was part time for several years before that), volunteered, and in general contributed to society (and to the government coffers).

A lot of folks complain about the government's take of income tax. I understand their frustration as I used to be one of them. But not now. I know why I pay taxes and my health is to show for it. I also sock away as much money as I can for retirement because I know that my retirement may one day be forced on me because of the MS.

I have repeatedly said over the years that I am one lucky duck. Not everyone can say that. Some folks may not be working full time or have full health coverage for other prescriptions or they may not be working at all. They may not be living where they want because of financial strains. Maybe they were the sole breadwinner before disability and can now no longer afford to look after their families the way they had been. Whatever the case, even in Canada, getting sick can cause great financial hardship, though it may not be because of the cost of the actual health care.

The Wookie moved to Canada from southern California when he was a teenager. His father (now semi retired) became a professor at one of the universities here. A few years after they had moved here, the Wookie's youngest brother was diagnosed with testicular cancer. Sadly, it was discovered too late and he passed away, but not before undergoing surgery and treatment. Both parents were working professionals but admitted that if they had still been in the US, the brother's medical care would have bankrupted them.

We have wonderful care in this country, wonderful doctors, and wonderful facilities. We also have problems with our medical system that we're trying to work out. The biggest complaint people have is wait times for tests or to see specialists. If your condition is emergent you will be seen and assessed quickly. If it turns out that you don't need emergent treatment, well, you'll wait...

Over the past several years I have watched walk-in medical clinics open up to help ease the strain on emergency departments. There is a shortage of family doctors and as a result, longer waits to see one even if you have one. That's part of what was driving folks to the EDs. The other part is that many people aren't proactive enough with their health, engaging in risky behaviour, not following doctors' advice , that sort of thing. The government and our doctors are not responsible for our health. We are. And we have to educate ourselves about...ourselves. We must become more knowledgeable about our health, we must lead healthier lives, and we must not take for granted the great things we already have.


This concludes the 22nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 6, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 4, 2008.

Thank you.
Comments for this post.

Friday, October 24, 2008

Most Promising New MS Treatment Found in Campath?

As researchers continue to investigate more effective and safe treatments, we MS patients will continue to read positive reports of clinical trial results and continue to hope for better treatments and possibly a cure someday. This week was one of those weeks. Positive results from a Phase IIb trial comparing alemtuzumab (Campath-1H) with interferon beta-1a (Rebif) was announced by Genzyme Corporation and Bayer HealthCare Pharmaceuticals.

Thursday, October 23, 2008

Quick Note re: Carnival

Just a quick note to say that the Carnival of MS Bloggers - Politics Edition will be coming soon.

I arrived home yesterday (after a 1.5 hour delay in a plane which needed a repair) just in time to eat dinner, grab my horn, and make it to rehearsal downtown.  It was a very long day, alarm clock in the morning at 6:00am and final return to my house after rehearsal at 11:00pm.

Then a request for an article on a particular timely topic which should go live on Multiple Sclerosis Central tomorrow.

Thanks for all of the nice comments left on my previous post.  I appreciate your support greatly.


And now I need to prepare for another rehearsal.  (boys and girls, can you say tired?)

Wednesday, October 22, 2008

Some Examples of Social Media Tools in Action

Johnson & Johnson Global Communications Conference
October 22, 2008

What is a Blog?

Welcome to my Blog - Brass and Ivory

Why I started blogging?

Health Policy Community
(my very first blog comment)
(roundup of the best in health policy blogosphere)

Patient Community and Support
Carnival of MS Bloggers #6 - A Country of Our Own
The Health Central Network - Pass the Power Please, k thnx


You Are Not Alone!!!!
I Understand

However Dangers Aboud!!

Notes saying - Thank You Lisa!!


Dear Lisa, I just wanted to send you a quick thank for your blog.  I've been reading your blog for a few months now (since my last exacerbation), and after your recent post I felt compelled to write, because I figured out what makes it helpful for me, and I imagine many other people who have MS.

You express in a real and clearly-written way what it sometimes feels like I'm the only one experiencing - and seeing it out there allows me to feel less alone in dealing with this disease.  Your description of the conversation with the nurse at the MS clinic made me laugh because of its familiarity.  Again, thank you for sharing your thoughts and your experiences.


Hi Lisa -- Oh the world is such a small planet!  I have been reading your blog for at least the past couple of months.  It is very easy to see how people get hooked on all of these blogs and start reading more and more...  And then there are people like you and Kim who not only read other's blogs, but respond and also write the most amazing of blogs yourselves.  THANK YOU SO MUCH for what you do.  It is very appreciated by someone like me.


Hi Lisa,  I wanted to thank you for adding my blog to the Carnival of MS Bloggers.  I find the Brass and Ivory so incredibly helpful to me as a newly diagnosed person.  I have a question for you about Copaxone.  I have been taking Copaxone for 3 weeks now and my injection sites are always sore.  Do you find this common?  I guess being so new to MS I feel this is common, but I just wanted to see what someone else has to say about it.

I read your blog today and I am also extremely fatigued as well.  I fell asleep at work about 3 times while typing.  It was great to read that someone else experiences the same thing.  Sometimes I'm not sure what are symptoms and what is just something else.

Thanks again for everything that you do.  It truly means a lot to me to be able to find some information just a click away.  


Lisa, Thank you for commenting on my post about depression.  I've been reading your blog and it is so interesting.  I'm just starting to read more and understand about the issues having a chronic illness can cause.  I was diagnosed with MS 2 years ago, so I've spent a lot of time just trying to understand the disease.  Any tips you have for pulling out of the depression would be much appreciated.

I'm lucky that I have a pretty mild case, but mild or not, it's still rough some times.  So, it's nice to talk to people who live with MS and go on with their lives.


I just wanted to say thanks for that link, it was very helpful.  I'm so glad that there's a place to go & get actual answers from real people who know what I'm talking about, ya know???


Patients Who Know - 
Real Answers  from Real People

That's WHY I Blog!!


Corporations using Social Media Tools

Baby Center
 Johnson's Baby (interactive?)
 Groups (need to participate!!)

Corporate Blogs and Forums
Burt's Bees - Blog
Fresh Step - Vet Corner
Armor All Owner Center - Community Forum

YouTube Channels

Cool Fun Health Games

New Health 2.0 Endeavours
 Health 2.0 Advisors (brand new today) (good information on savvy patient behavior)

Thank you for having me here today!

Tuesday, October 21, 2008

Health Engagement and Social Marketing

This morning I discovered The Health Engagement Blog whose motto is "Advancing health relationships, marketing and communications" and brought online by Edelman which is a big player in corporate public relations and communications.  This is what they are about:
Welcome to our blog. Our aim is to foster conversation about the increasing importance of Health Engagement and explore its implications and imperatives for communicators. We believe that for companies, brands, and organizations in health to succeed, they must develop an intimate understanding of stakeholders and the issues that matter to them, communicate and converse with them through the channels they use, and build their trust through authenticity and shared purpose. This is Health Engagement.

Each of the voices on this blog has his or her own point of view about Health Engagement, based on professional background and experience, research, and personal relationships – but none of us has all the answers. Here are some questions we invite you to join us in exploring: How do you see the public's preferences for engagement with companies and brands changing? From your perspective, what are the emerging health issues of top concern? How well are health companies, brands and organizations trusted? What influences this?

We encourage you to shape and deepen the dialogue by sharing your experiences and viewpoints on the highly personal, fundamental issue of health. We look forward to exchanging ideas. 
From The Health Engagement Blog, I perused their blogroll and discovered the following (only excerpts provided below):

Harnessing the power of information democratization requires us to identify the challenges and find appropriate solutions.
  • “Availability” does not necessarily equate with “access.” Just because the information I need exists somewhere doesn’t necessarily mean that I can find it. Navigation to information targeted to the appropriate moment in care is critically important. We need to translate widespread availability of information into true, ubiquitous, and timely access - something that’s feasible by linking data sources with high-quality health content.
  • “Data” is not the same as “information,” which is different from “knowledge,” which is not equal to “behavior.” In order to go up the chain from data all the way to the behavior change needed for positive health outcomes, we need to connect accessible data with science—such as evidence-based medicine, decision sciences, predictive modeling, and behavior change science.
  • For some people, the free access to information has led to a diagnosis of “information overdose” and a high signal-to-noise ratio. The appropriate Ix (or information therapy) means finding the right dose, frequency, and duration of information to proactively deliver, prescribe, or make available. We can do that by thinking creatively about how to target, tailor and contextualize health information for consumers’ individual learning styles, education levels, values, and preferences.
We can accomplish these three things by 2020 if we: develop clear definitions of what constitutes achievement of them; establish measurable objectives for what should be done; and align incentives to reward clinicians, systems, consumers, and others for achieving them. Those steps will allow us to create real improvement in health care delivery by translating information democratization into effective communication.

Health Communication and Informatics in Health People 2020 from On Social Marketing and Social Change Blog
In thinking about how health communication and informatics can inform the development and achievement of Healthy People 2020 goals and objectives, here are some illustrative examples drawn from progress in these fields over the past decade:
  • Power of distributed networks for gathering, sharing, merging, mining and reporting health data
  • Explosion in consumer-centric health communication strategies such as social marketing and advances in social media
  • Rise and popularity of digital communities based on shared interests (social network sites)
  • Advances in evidence-based health communication, marketing, and health literacy practices
  • Advances in culturally-sensitive health communication
  • Expansion of entertainment education
  • Lessons learned from responding to public health crises
Healthy People 2020 can not only benefit from our work in these areas, but should also serve as a catalyst for their widespread use in addressing disease prevention and health promotion objectives across the board. One of the most important areas where HP2020 might focus is to promote the use of health communication and informatics interventions that are evidence-based, collaborative in nature, strategically designed, appropriate for the intended audiences, adaptive to changing situations, and consistent and reinforcing across multiple messages and channels. 

Healthy People should also support the adoption and expansion of health informatics across public health practice. In particular, HP2020 objectives can address electronic health records that collect, store and manage information; interoperable health information technologies; electronic patient management tools; population health technologies and interventions; tools to exchange data and support community care; disease surveillance technologies; telehealth systems to monitor and deliver remote care; patient/provider decision support tools; and health administration support tools.

And while the past decade has seen the emergence of a number of centers for health communication and informatics research across the country, the needs are far greater than the resources allocated to them so far. We need to continue to expand our knowledge base and test new strategies, models and tools. We then must translate and disseminate this knowledge and experience through relevant health information and best practices intended for at-risk audiences and other priority groups. Some of the priority research needs HP2020 should highlight include:
  • Collaboration in health care and health promotion
  • Informed and cooperative decision-making
  • Understanding and responding to health risks
  • Comforting communication and providing social support
  • Media influences on lifestyles and norms
  • Influences of technologies on health behavior
  • Customized media/messages and behavior
If we incorporate health communication and informatics into HP2020 in ways such as I have outlined, we can offer much to improve the health of our nation. The challenge for our field will be living up to our promise.

Interesting stuff, especially since I'll be talking about this very thing strictly from a personal (non-professional) perspective tomorrow morning.  But the possibility of becoming a consultant or something is still always there.  Thinking, thinking........

Monday, October 20, 2008

Carnival Submissions Due - Election Edition

Politics is in the air with the election literally around the corner.

The next Carnival of MS Bloggers will be the last one before the election.

Please submit your election/politics/healthcare posts via email.

I look forward to seeing what you share. 

Thank you.

Sunday, October 19, 2008

Gratitude with Attitude

Some time ago, Jim kindly presented me with the "Gratitude with Attitude Award."  
It is time to pass it on to some fabulous blogging friends, old and new.  

Here are the rules:

* Put the logo on your blog or post.
* Nominate at least 10 blogs which show great Attitude and/or Gratitude!
* Be sure to link to your nominees within your post.
* Let them know that they have received this award by commenting on their blog.
* Share the love and link to this post and to the person from whom you received your award.

So here's my Baker's Dozen.  I'd love to award this to all my readers, but that would take FOREVER to leave comments on all two of your blogs.  LOL.  
Please don't fret if you're not included this time round.  I still love you.  Mwwwaaah.

Thank you out there for having such great blogs! You deserve this! 
Feel free to award people who have already been awarded.
Now, go have some fun and spread some linky love.

Saturday, October 18, 2008

Thank You So Much!!

Well, we've done it!!  

We reached our goal of raising $600 for Herrad's cushion.

I am so thankful to each of you who generously donated funds.
(you know who you are)

 Anne will make sure Herrad gets what she needs.


Thursday, October 16, 2008

Cost of Medical Care and Tight Budgets in Our Economy

Hey, Great article in the Washington Post today discussing costs of health care and choices people make.  Two multiple sclerosis patients were interviewed and featured within this article which explains why I'm presenting it in full here.  Oh, and btw, one of those MS patients is ME!!

As Budgets Tighten, More People Decide Medical Care Can Wait
By Ceci Connolly and Kendra Marr
Washington Post Staff Writers
Thursday, October 16, 2008; A01

To monitor the multiple sclerosis attacking Ann Pietrangelo's central nervous system, her doctor recommends an annual MRI. Last year, the 49-year-old Winchester, Va., woman had to pay a $3,000 co-payment to get the imaging done.

This year, she's skipping the test. Even with insurance, it's more than her budget can tolerate, especially with the roller coaster on Wall Street devouring her retirement savings.

"I'm doing everything I can to avoid going to the doctor," she said.

From Park Avenue dental offices to the Arlington Free Clinic, the global economic crunch is forcing a growing number of Americans to scale back on medical care. Consumers are attempting their own form of triage, pushing off seemingly less-urgent services in the hope that their financial health will improve. But the danger, say physicians, is that the short-term savings may translate into more severe long-term health implications.

At the extreme are cases such as the Texas woman who went to the hospital complaining of back pain. Physician Doug Curran immediately spotted cancer on the X-ray.

"She'd had a lump in her breast for a while, but things were tight and she said she couldn't get it looked at," he recalled. "We're going to see more of that."

Nationwide, the number of consumers who went without a prescription, tapped into retirement savings to pay for health care or skipped a doctor visit for themselves or a child has risen since last year, according to a survey released this summer by the Rockefeller Foundation and Time magazine. One-quarter of the 2,000 respondents, for example, said they had decided not to see a doctor because of cost in 2008, up from 18 percent the year before. Ten percent said they did not take a child to the doctor for the same reason.

"When the economy is in the situation we have today, people make tough choices," said Kansas Insurance Commissioner Sandy Praeger, who is head of the National Association of Insurance Commissioners. "Things are just not going to get done."

After nearly a decade of steady -- often double-digit -- increases in drug spending, the research company IMS Health this summer recorded the first actual decline. And a survey by the Center for Studying Health System Change found that nearly 20 percent of Americans report having difficulty paying medical bills.

Layoffs, shrinking bank accounts, rising medical prices and widespread anxiety that the economy is likely to worsen are prompting people to split pills, forgo screening tests such as colonoscopies, delay elective procedures such as laser eye surgery and turn to home remedies as cheaper alternatives. Hospitals report that unpaid medical bills are on the rise, pharmacists see a spike in cheaper generics, and demand for low-cost care is climbing.

Falls Church music teacher Lisa Emrich is coping with a dwindling number of piano students by cutting back on physician visits.

"I have too many doctors and specialists who all wish to see me twice a year," said Emrich, who is being treated for multiple sclerosis and arthritis. "Sometimes I might skip one if I'm doing well in that area. . . . When I see my neurologist, I'll ask about my arthritis, which doesn't make much sense. But I try to get as much as possible out of my doctor visits."

For Sandra Harrington, a waitress from Oxon Hill, the trade-off comes in treatment for an infected eye. Her doctor prescribed administering steroid drops twice a day. But as her tips have shrunk, she has decided that applying the $100 medication once a day is all she can afford.

"It's a vicious cycle," she said, explaining that because it is too painful for her eye to be exposed to direct sunlight, she works only night shifts. "People cut back. Then people like me suffer."

In the past month, traffic on the five-year-old advice site rose 14 percent. The site, which allows customers to pose a health question and "bid" $9 to $30 for a doctor's or a nurse's response, had nearly 400,000 page views in 30 days, said chief executive and founder Andy Kurtzig. In a telling sign, inquiries related to stress, high blood pressure, drinking and heart pain jumped 33 percent.

At the Arlington Free Clinic, the surge in people seeking care has been overwhelming, said Executive Director Nancy Sanger Pallesen. Last week, the clinic provided free preventive screenings to 19 new patients, but it turned away 27 others, she said.

"Those numbers are higher than what we were seeing just this summer," she said. "Unfortunately, we can't take them all in."

Even free care may not be a good deal for people with limited means. For some, the price of transportation is prohibitive; others fear discovering an illness they do not have the money to treat.

Many are forced to juggle competing medical needs. Pietrangelo must balance the importance of the MRI, which detects brain lesions, and the costly medications that prevent her from relapsing. She pays co-payments of $500 per drug per month. There are no generic alternatives.

"I can't shop around," she said. "My hands are tied."

Most analysts expect the medical crunch to worsen.

"We know from past experience that an economic downturn drives more people to be uninsured," said Len Nichols, director of health policy at the nonprofit, nonpartisan New America Foundation, a think tank. "They lose their jobs, they lose their income and their insurance."

That is what happened to Tim Doss. On Sept. 18, after driving a cement truck for an Indiana company for 10 years, he was laid off.

"They told me, 'As of midnight, your insurance is lapsed,' " he said. Doss, 50, and his wife have illnesses that require medications, regular doctor visits and tests. Creditors have come to their home trying to collect the $3,000 they owe in hospital co-payments from when they did have insurance.

The couple decided that Doss's annual checkup took precedence because he needed it to keep his commercial driver's license. The checkup, plus blood work for a fatty liver and high cholesterol, cost $300. He persuaded his doctor to provide free samples of his liver medicine.

Helen Doss does not plan to get an annual mammogram this year, even though her mother died of breast cancer at age 56. Doss was offered a free stress test at St. Vincent Indianapolis Hospital, but she is afraid it will turn up more problems that she can't take care of.

"I'm just holding off for a year and hoping nothing happens," she said.

Their primary-care physician, Steven Wilk, is devoting more time to helping patients decide what to postpone.

"Folks are asking us to try to limit what we order or pare it down to the bare-bones minimum," he said. "As a doctor, I worry about the risk of missing something at an early stage. It could lead to more serious problems down the road."

In past recessions, health-care spending briefly spiked -- as people raced to doctors before their insurance ran out -- and then fell sharply, according to industry analysts.

"Many times in health care there's a lag of three to six months before it hits really hard," said Donald Fisher, president of the American Medical Group Association, which represents large, multi-specialty providers. "If they have a problem, they get it fixed while they still have health insurance. Then we see a decline in elective procedures, and then we really see a drop-off."

In Plano, Tex., life feels like an endless downward spiral, Victoria Freudiger said, for herself and her husband. Losing jobs meant eliminating health insurance. No insurance meant Thomas Freudiger went to the hospital when he developed pneumonia this summer. That resulted in a $363 bill they couldn't pay. Now their credit is shot.

As the economy crumbled, both started canceling preventive screenings. She hasn't had a pap smear or a mammogram for close to two years; he is overdue for a colonoscopy. They use do-it-yourself dental cement to patch their teeth and put their best face forward in job interviews. And although her doctor prescribed Neurontin for her seizures, Victoria Freudiger tries calming techniques instead of the pills.

"Instead of taking them every day, I wait until I start feeling sick, and then I take them again," she said. "Both of us are suffering mentally, emotionally and physically."

Though the burden is especially heavy for uninsured Americans, even those who have coverage are feeling the pinch as employers shift higher deductibles and co-payments onto employees.

"The reason why health care was immune [to recessions] in the past was because most people were covered under good insurance plans," said Jean Mitchell, a professor of public policy at Georgetown University. Now, "people are realizing, 'Oh my gosh, I have to pay for this out of pocket.' "

In Durango, Colo., Marsha Porter-Norton and her husband, both entrepreneurs in their mid-40s, switched to a high-deductible plan when insurance premiums skyrocketed. Their new catastrophic policy costs $479 a month, but they have to pay the first $6,000 in expenses.

She is supposed to get ultrasounds twice a year to check on the fibroid tumors in her uterus. But the couple's retirement portfolio "has taken a massive hit," and they worry about their jobs, Porter-Norton said. So, for now, she's going to wait on the $500 ultrasound.

"I'm going to take a gamble," she said.

Wednesday, October 15, 2008

Questions, Answers, and More

Thank you readers for sticking with me. Things are hectic around the homestead and I'm trying to stay above the surface.

I have been, however, doing some writing related to MS topics over at Multiple Sclerosis Central. If you don't already know, I'm a featured writer over there - a "patient expert" - or I'd like to say a "patient advocate." I invite you to read and subscribe to my twice weekly blatherings.

Here are some of the things I wrote recently:

"Pass the Power Please- kthnx" in which a discussion of social communities, forums, and patient empowerment is key.

This fits in perfectly with the presentation and panel discussion of which I will be a participant next Wednesday. I'm still coming up with thoughts to share, so if you have any to add, please do so.

"Need Help Paying Drug Bills? Who ya gonna call?" in which I provide links to sources of financial assistance for MS patients needing help with the DMDs.

"Hey!! Turn Up the Lights and Pass Me Some Color!" in which I discuss the onset of Optic Neuritis 8 years, 7 months ago, pre-dating MS diagnosis considerably.

Also today marks the 3rd anniversary of my final "DEFINITE MULTIPLE SCLEROSIS" diagnosis. Whooohooo. Or is that really a day to celebrate? Not sure.

And...... There's this cool feature over the MS Central where folks can ask questions and folks can answer questions. Kinda like a forum of sorts.

Anybody can ask or answer, but I'll let you in on a little secret, just between you and me.

I actually get a token payment for researching and answering the inquiries. Shhhh... you didn't hear that here. So if you are so inclined, please feel free to help a girl out and ask some MS-related (or not) questions over there.

Ok, enough self-promotion.

I hope that you are having a nice day. :-)

Monday, October 13, 2008

Thump - Zap - Twitch - Jerk

Today is Columbus Day, a federal holiday, a day which I had intended to sleep late and enjoy some quiet time. Perhaps enjoy some time to collect my missing Words.

Instead I awoke to the sound of a jack-hammer outside my window - thump thump thump.
Seemingly at my headboard - thump thump thump.
I reach for my glasses - thump thump thump.

Look out the window - thump thump thump.
See my neighbor talk to a man in her driveway.
Thump thump thump thump thump thump.

The jack-hammer was being wielded to demolish the driveway - thump thump thump.
Piece by piece, small cracks are made in the surface of the hardtop - thump thump thump.

I curl up in my favorite recliner and begin to make my daily rounds of many blogs.
Thump thump thump thump thump thump.

An hour goes by - thump thump thump. Another hour - thump thump thump.
The sound seems to trigger a spastic muscle on my torso - jerk.

The muscle pulls my ribcage to the right, subtle on the outside, distinct on the inside.
Thump thump thump - Twitch - thump thump thump.

Somehow the relentless noise of the hammer causes electrical circuits to misfire.
Thump thump thump - Zap - Twitch - thump thump thump.

Then a muscle in front of my left shoulder decides to join the action.
Thump thump thump - Zap - Jerk - thump thump thump.

Where have those words gone? The voice in my head is drowned out.
Thump thump thump - Zap - thump thump thump.

What was I trying to read, think, say, comprehend...?
Thump thump - Twitch - thump thump - Jerk - thump thump.

Then after about six hours, the thumping stops. The cloud begins to lift.
My brain suddenly clears and the thoughts return - Twitch.

What a blessing and relief - finally I could think and could read.
Maybe even get around to some writing - Jerk.

However, it was time for music cheerleader duty.

That was my day until about an hour ago.

Thursday, October 9, 2008

Carnival of MS Bloggers #21

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Daily OM 
by Herrad

You may jump to conclusions today when interacting with others,
especially if you are assessing your exchanges from an emotional or biased point of view.

Perhaps you are feeling suspicious of other people's motives
or are making assumptions about how you're being received.

If this is the case for you today, it may be because your mind
is busy referencing the past and compelling you to get stuck in projections.

Consider focusing your attention on the present moment instead.

Paying attention to what's really happening, rather than getting mired in mind chatter,
can help you to think clearly and rationally so you can form appropriate conclusions.

Staying present allows us to process information rationally
during our interactions with people.

Being in the moment frees us of the mind's tendency
to dip into the past or jump ahead into an unknown future.

We can listen attentively and take what we see and hear for what it is in its own context.

The objectivity this affords us allows us to come to more pertinent conclusions.

We can also respond to what's in front of us rather than
react from past experiences, our fears, or conditioning.

Stay present and absorb what is happening to you right now,
and you will be able to honestly assess your situation
and draw more accurate conclusions.

In a post which made me laugh outloud, Mandi of Anatomy of Restlessness shares  
An open letter to Acme Syringe.
Dear Acme Syringe Company:

I am writing to tell you that I have used your syringes for years, and I would like to ask you for a syringe sponsorship. I believe that I have excellent qualifications, and I will be a good representative of your company. A far better representative than the folks who abuse your syringes and use them multiple times to inject illegal substances. Attached is my syringe resume:

One round of allergy shots 1x a week for 3 years
One round of 2 allergy shots 2x a week for another 3 years
4 skin tests, with about 60 needle pricks each (back and forearms)

Multiple Sclerosis (this is where it gets exciting)
Innumerable blood draws
almost 25 days of infusion with Solu-Medrol and IVIG
spinal tap (this one requires several little needles for numbing and a few BIG needles for drawing cerebro-spinal fluid)
injections of interferon every other day forever and ever
B12 shot

biopsy with several needles
more blood draw

I don't have diabetes, but I would definitely use your syringes if I were to get it.

Thank you so much for your time to consider my request. Please feel free to contact me with any questions or comments.


ps: I can definitely get you lots of photos of me wearing a sports bra in extreme locations using your syringes.


Would the real Bald Ben please stand up......

I never much thought of myself as a "blog person". Sitting here writing some sort of blather about myself for others to read never really seemed of much interest to me. Then my wife got pregnant. One might ask, "Hmm, how does your wife getting pregnant lead you to blogging? I would think you would have a lot more to think about?"

Your question would be a good one, albeit a little short sided, but a good one nonetheless.
You see, my wife wasn't only pregnant with one baby, but she was pregnant with two babies! Yep twins. This as I have been known to say is proof there is a God and he has a very dark and wicked sense of humor.

Picture it: It's a lovely day in heaven. Large white billowy clouds, soft harp music in the air, well manicured lawns, you know....heaven. Standing by the pearly white gates, God, calls all his buddies around, "Buddha, Moses, Vishnu, Jesus get over here." As they gather they realize that God has got a real rip snorter and He can barely hold back his laughter.
Now, God has been known to tell a good yuke from time to time, (i.e.=2 0floods, pestilence, duck billed platypus) but if he already can't contain himself this has got to be good. "Wait till you see this," almost bursting in hilarity, "See that Bald guy down there?"
"Yeah" They reply choir like.

God bellows out," allakazam!"


Bald Ben's got MS.

God is rolling. He almost starts a thunder storm he is laughing so hard.

The other deities look at each other a bit confused. You see, Buddha never understood this whole incurable disease bit. He's more of a knock, knock joke guy.

Knock, knock…
Who's there?
Buddha who?
Don't cry, it's just me the Enlightened One…..

And Moses was still trying to figure out how the Jews, after thousands of years of persecution, were supposed to be the chosen people. Jesus, being the savior and all, meekly taps God on his great big omnipresent shoulder and says, "Dad, ummm, that wasn't really that funny." God, still laughing, eyes his eternal Son and says, "Wait for it, wait for it...."

Another allakazam!

ZAP! Bald Ben is now the father of twin boys. All the deities break down in uncontrollable laughter at the great cosmic joke that was just played on the poor kid who lost his hair when he was 16. If you listen real close, you can still hear their eternal mirth.

But I digress, I started the family blog (It's linked to on the left20there. Two babies, one Bald guy, and a woman who can't tell the difference: a love story.) Simply because I was feeling a bit lazy and antisocial. "Hold the phone," I hear you say, "Lazy and Antisocial? Blogging can be a tough hobbie, and it ostensibly connects you to thousands of people at one time."

Ahh, you are right. If done with a little bit of heart and elbow grease blogging can be a full time job. However I am not looking for anything permanent thanks, just a little part time thing on the side will do just fine. The laziness and antisocial behavior came out of the fact that I didn't feel like having to call every person we knew with every detail of every doctor appointment, answering the same questions ad nauseum. Oddly enough despite the blog, I had to call every person we knew with every detail of every doctor appointment, answering the same questions ad nauseum.

However something odd happened along the way,

"Did you step in Dog poop?"

For the answer to this question AND MUCH MORE, visit Bald Ben who says, "...I will not hide. I am Bald Ben. My view points, my thoughts, my opinions are all free for the taking. I stand behind what I say, that's why I say it. Otherwise this would all be a colossal waste of time."

This concludes the 21st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 23, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 21, 2008.

Thank you.
Comments for this post.

Wednesday, October 8, 2008

Fact Check the Presidential Debate

Here is just a little fact checking in relationship to last night's Presidential Debate.  I apologize in advance for those persons not interested in politics.  This seems very important to me lately.  This is from the Washington Post.

"Comment is free, but facts are sacred." -- C.P. Scott, editor Manchester Guardian, 1921

Our goal is to shed as much light as possible on controversial claims and counter-claims involving important national issues and the records of the various presidential candidates. 

Second Presidential Debate: Nashville

10:01 p.m.
Obama claimed that the government had invented the computer in order to encourage scientists to communicate. He probably meant the Internet. The personal computer was invented by Apple and other private companies. IBM pioneered the mechanical punch card tabulating machines which formed the basis for the large mainframe computers.
--Michael Dobbs

9:57 p.m.
Once again, McCain said that Obama raised taxes 94 times. This came up in the vice presidential debate, and it is a bogus charge.

Fact, a non-partisan watchdog, has analyzed the charge.

Of the 94, 23 of those votes were indeed votes against proposed tax cuts. Eleven of them were increases on families earning over $1 million to help fund programs such as Head Start and school nutrition. And 53 were on non-binding budget resolutions that foresaw allowing tax cuts to expire as scheduled. Such out-year projections are meaningless, since non-binding budgets are passed each year. ruled the claim misleading.
--Glenn Kessler

Health Care
9:46 p.m.
In outlining his tax policy, John McCain boasted that he would give all American families a $5,000 tax credit to allow them to go out and buy their own health insurance. This is true but it is only part of the story. The other part, which McCain rarely mentions on the campaign trail, is that the Republican candidate has also proposed taxing employer-provided health benefits, which will wipe out most of extra income from the tax credit.
--Michael Dobbs

9:43 p.m.
Sen. McCain talked about the U.S sending "$700 billion, some of it to countries that don't like us very much." And he said, "My friends, some of this $700 billion ends up in the hands of terrorists organizations." He's talking about the U.S. imports of oil, for which the U.S. consumers send money to the countries that produce the oil.

In fact, according to the Energy Information Administration, which bills itself as offering the "official energy statistics from the U.S. government," the top producer of crude oil for import into the U.S. is Canada, not exactly a country that doesn't like us. The second largest is Saudia Arabia, another ally. And then Mexico, also a key ally.

But McCain is right that the list also includes countries like Venezuela, whose leader, Hugo Chavez, can accurately be proclaimed to be "no friend" of the U.S. And the list includes Nigeria, Iraq, Angola, Brazil, Algeria, Ecuador, Russa, Colombia, Azerbaijan, Kuwait and Chad.

It is not possible to know how much of the money that flows into some of those countries ends up in the hands of terrorists organizations.
--Michael D. Shear

Boeing Contract
9:33 p.m.
McCain took credit for his crusade to block a new contract for Boeing for a new fleet of midair refueling tankers. He said he saved taxpayers more than $6 billion while launching a Senate probe that found cozy relations between Pentagon officials and Boeing executives.

But the GAO found significant problems in the rebidding of the new contract, which had awarded the contract to a partnership between Northrup Grumman and the European firm EADS.

"This shows how a sort of naive crusade for good government can actually backfire," Loren Thompson, of the Lexington Institute, a defense think tank, told Newsweek.
--Glenn Kessler

9:28 p.m.
McCain continues to make an issue out of earmarks, which are only a small part of the overall federal budget. The big ticket items are entitlement programs, such as Medicare and Medicaid, and defense spending, which together represent much of the federal budget; earmarks are just $16 billion out of a more than a $2 trillion budget.
--Glenn Kessler

Fannie Mae and Freddie Mac
9:24 p.m.
Sen. McCain claimed that Sen. Obama was the second-highest recipient of money from Fannie Mae and Freddie Mac "in history." In fact, according to the OpenSecrets.Org site, which tracks political contributions, Obama was third among senators in receiving contributions from the two mortgage giants during the period of 1989 to 2008.

Having received $105,849, he falls behind Sen. John Kerry (D-Mass.) and Sen. Christoper Dodd (D-Conn.) in third place, not second. And it's unclear where McCain bases his claim that Obama is second "in history" since the sites that track these contributions don't use that kind of duration.
--Michael D. Shear