Brass and Ivory: Life with MS and RA: August 2009

Sunday, August 30, 2009

Fight for the Little Guys

I know that I want to say something, but I’m just not sure what nor how, so please bare with me.

Since being diagnosed with multiple sclerosis, I’ve learned more than a few things about how our insurance and health systems work. I’ve learned how it doesn’t work for the “little guy” - the self-employed, the individuals without access to protected group coverage, the folks living with chronic illness, those who truly cannot afford health insurance coverage but who fall right through the safety net programs.

According to the Centers for Disease Control and Prevention, chronic disease causes major limitations for 1 out of 10, or 25 million people, in the United States. Chronic diseases account for 70% of all deaths in the U.S., which is 1.7 million each year. These statistics from the home page of the CDC’s Chronic Disease Prevention and Health Promotion website.

When you are living with a chronic illness, access to health care services and providers is a basic necessary. In our country, obtaining access is expensive so health insurance coverage is also necessary. But if you have a chronic illness, then obtaining health insurance is a tricky matter. It’s not too bad if you are able to maintain employer-sponsored group health coverage because there are protections provided by law.

The regulations, however, differ from state to state regarding pre-existing health conditions. There is no basic standard of “no pre-existing condition coverage exclusions in the group market” which would simplify the rules. Simplification would eliminate so much wasted effort in trying to determine which rules apply to any given situation. Simplicity is good!!

But notice that I only mentioned employer-sponsored group health coverage. What about individual health coverage?

Well, individual health insurance coverage is a whole different ball game. The individual market does not have to play by the same rules as the group market. In fact, the individual market varies even more greatly from state-to-state. See Kaiser State Health Facts.

Do you recall when the Mental Health Parity Act was passed in 2008? Very exciting development in reforming health care. However, it only applied to group health coverage provided by employers, with more than 50 workers, who do not meet a cost exemption. Not for individual policies, not for Medicare, not for small businesses - only large groups. Again, not playing by the same rules but a move in the right direction.

So far these incremental moves are working to improve the health coverage of large groups, not the “little guy.” These changes do nothing to protect those of us exiled to the individual market and not eligible for assistance. I remember when Rudolph Guiliani was running for president. He advocated for millions of people to flood the individual market which would supposedly prompt insurance companies to create less expensive (meaning less comprehensive) policies to “meet individual needs and not government mandates.” I wanted to scream at the top of my lungs - No! NO! You do not want to have what I have. Stay safe and protected!

But as time has gone on in the past 2 years, I begin to have mixed feelings. I wish the best for others and hope that they may stay safe and covered. However, I also begin to wish that more people understood what being one of the “little guys” is like. Those who lose access to their employer-sponsored health coverage find it a cruel and expensive market out here.

With this in mind, I shouldn’t be surprised that the people around me who are fearful of the “health reform bill” are ones who are safe within their employer-provided, subsidized, tax-free, group health insurance coverage. And some of these same people believe that the safety net programs or charities will provide for those “truly in need.” So, next question is what does it mean to be “in need.” This is a tough one to answer, so I’m not even going to try right now.

But why are so many fearful of the health reform efforts being discussed publicly? Is it the fear of change? Is it the “I have mine, now you need to go get yours”? I was told before to “get a good job with benefits.” Well, lots of people are looking for jobs now, period. But what about those who live with chronic illness who may also be limited in their daily activities. Could each of them find a job with good benefits and maintain employment?

Before being diagnosed with multiple sclerosis, I felt safe in having had the foresight to obtain health coverage when I was healthy. I even obtained the highest level of coverage available to me as a self-employed freelance musician. I was proud to be acting as a responsible grown-up.

After being diagnosed and prescribed Copaxone (which costs about $30,000 each year), a friend at the swimming pool asked me, “will your insurance cover it?” See, she has a son who has MS and was well aware of the disease and its treatment options. I innocently replied, “I guess we’ll find out.” Obviously, I thought that the answer was a given. Copaxone was listed on the formulary and my insurance had drug coverage. Well, I learned that it wasn’t that simple.

After struggling with the insurance company and basically begging the assistance program for the help I needed, I learned that nothing is truly that simple. I fell right through the big gaping holes in the safety net programs. Not just one, but many of them. Even my parents who are secure in their FEHBP coverage have had their eyes opened to the problems with our health insurance industry and the lack of federal laws to regulate the ENTIRE system, not just portions of it.

So why are others so fearful of reform? and fearful of having the government establish a level playing field for all? I’m somewhat baffled by this. We have such a mishmash jigsaw puzzle of a system, what is so wrong with creating a system which would truly promote choice and competition?

So here’s what I want to say today - I’m one of the “little guys” and I need the help!!

Friday, August 28, 2009

Carnival of MS Bloggers #43

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

Yoga, Tysabri, and Insurance

For My Students: Yoga Invocation
by Nadja

When I teach yoga I like to give freely of myself, to nurture my students and to help bring them closer to their true selves.

Nevertheless, I get as much out of my teaching as they do. Teaching yoga gives me a home, a place of sanity to stand when all I want to do is howl at the moon. It reminds me to breath. It reminds me of my favorite prayer by Saint Francis of Assisi:

"Lord make me an instrument of thy peace
Where there is hatred, let there be love
Where there there is injury, pardon
Where there is doubt, faith
Where there is despair, hope
Where there is darkness, light.
Oh divine master--
Grant that I might not so much seek to be consoled, as to console
To be understood, as to understand
To be loved, as to love
For it is in giving that we receive,
And it is in death to self
That we are born to eternal life."
Amen.

My heart is filled with gratitude for the things I receive from teaching yoga. I bow to my students. I bow to the teacher in all things. I prostrate myself to the divine with the faith that I will find a way no matter what.

Let yoga be your candle in the dark.
Let it lift you and fill you.
Let it in inspire you
Take what you discover on your mat into the world
And create peace, love and harmony.

Tysabri and Little Pieces of My Life
by Azoyizes

At my last neuro appointment, he and I had a talk about how my MS is getting worse and how he and I believe my current therapy (then), Betaseron, just wasn't helping. I told him that I wanted to start Tysabri infusions and he agreed.

Problem is, I have Medicare but no supplemental insurance. The Infusion Center figured that my co-pay would be $575 every four weeks. There is no way in hell that we can afford that kind of money, I don't care how good the drug works.

I contacted TOUCH, and they put me in touch with NORD. I got paperwork from NORD yesterday, and we'll get it filled out and make copies of our financial records, hoping that they will cover my co-pay.

If I do get to go on Tysabri infusions, it will be wonderful. I honestly believe that this drug can help me.

If I don't, I'm not going to get depressed or sad. I will just continue on with my life, deteriorating toward who knows what. I will be DMD-free, anyway.

In other news, I was invited to join a book club--my first ever. Our first book was Travels With Charlie by John Steinbeck. Loved it. We meet every other month at a nice little restaurant that is closed for lunch during the summer, except for the book club. We have great food, good discussions, and lots of laughter. Three of the women in the club (including me) have Saint Francis service dogs. The woman who started the club is also the woman who co-founded Saint Francis. There are 10 of us, and everyone is nice and friendly. Our next book (just started reading it today) is The Good Earth by Pearl Buck. Think I may have read it in high school, 40+ years ago!!

I have also volunteered and been accepted to be on the Outreach/Screening Committee for Saint Francis. Eventually, I will be calling people who have applied for a service dog, asking them questions and talking to them about the responsibilities and hard work that goes into training with your dog. I will sit in on interviews of people who have passed the screening, and I'll have imput into whether or not I believe they would be a good candidate for a dog.

These two things are giving me something to do outside of the house, and also giving me a sense of accomplishment.

Next Saturday is my 40th high school reunion. I am very excited about it. This is the first one I've ever attended. There are a group of us who have kept in touch through the years who are all going to sit at the same table. Next morning, this same group is meeting for lunch and talk. There are so far 45 graduates (plus spouses) who have signed up to come. My class had about 125 people in it, so that's not a bad turnout.

Getting Squeezed
by Lisa of Brass and Ivory

This week I received the annual note from Carefirst BCBS, my insurance company, informing me what my new health insurance premium rate will be for the upcoming 12 months. Of course, I expected that it would go up, no matter how I wished it wouldn't.

What I didn't expect was HOW MUCH it was going up!! 31% increase

OK, so it's not the first time the rate has gone up substantially -
In 2003, it was 22.2%. In 2004, 18.2%. In 2007, 19.9%. In 2008, 18.8%.
(see graph below)

But COME ON. Enough is enough. another 31%?

For insurance which doesn't pay for my MS medications, I will be paying $5172?

That's just for me, no one else, and is not subsidized by any employer since I am self-employed. And unlike most folks who have employer-sponsored health insurance, I will be paying Social Security, FICA, etc taxes on that $5172.

Why doesn't Carefirst cover my main MS medication, Copaxone?

Because the drug benefit for individual policies is capped at $1500 annually.

How do I get Copaxone if insurance doesn't cover it?

I have to qualify for assistance from NORD which administers the PAP.

How do I do that?

I must earn less than 200% Federal Poverty Level (FPL) and can't have significant amounts of money in savings.

How much is 200% FPL?

This year (2009), it is an Adjusted Gross Income (AGI) of $21,660.

For more on this story, see The Value of Money or Value of Health: What Do You See?

Now, to be fair, the $5172 in insurance premiums will not be 24% of my 'total income.'

Since I'm self-employed, I get to deduct the amount spent on health insurance premiums before income taxes are calculated. So it's a minimum of 19.3%, after Social Security/FICA tax is accounted for and before the AGI is calculated.

But, please tell me. Who can afford to spend 19-24% of the highest level of income they can afford (or are allowed) to earn for health insurance premiums?

And let's just say that for 2008 I did earn considerably less than 200%. In fact, $5172 really would be closer to, if not more than, 25% of total income.

According to proposed health care reform legislation, affordable premium rates for someone with my income level would be closer to 5% of income AND I would very likely have coverage for my medical needs, including pharmaceuticals.

A few weeks ago, I sat down and calculated what medical expenses were included during one year in obtaining the routine care I require. That detail can be read at Living with Multiple Sclerosis: The Cost of Chronic Illness.

Update: Now it looks like the Public Option just might get dropped during negotiations in Congress. sigh.

This concludes the 43rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 10, 2009. 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, September 8, 2009.

Thank you.

Comments for this post.

Wednesday, August 26, 2009

Town Hall & Health Reform Circus

Oh boy, what a circus!! I should have adjusted my expectations when the younger couple standing in line behind me were more interested in viewing the signs and "crazies" in the crowd. I asked them what they were interested in [regarding health reform], the response - "seeing the people, the crazier the better." Big Sigh.

Some of the organizations represented outside included:
Organizing for America (including folks from MoveOn, I think)
SEIU, Healthcare Now, Families USA
LaRouchePAC (crazies who portray President Obama as Hitler)
American Constitutional and Capitalism Defense Front (very much anti-reform)
Planned Parenthood, Operation Rescue
a group for Tort Reform and the "Leave Us Alone" Coalition

Oh, and I can't leave out the sign I saw from Prescott Pharmaceuticals, proud sponsor of "Cheating Death with Dr. Stephen T. Colbert." Remember this was somewhat of a circus.

In the pep-rally atmosphere before the event began in the South Lakes High School Gymnasium in Reston, VA, I believe it was the clever guy who created the "Go Skins" sign (on the back of his pro-reform sign) which got the loudest cheers from those in attendance.

It was a spirited atmosphere certainly, but during the speakers time I naively expected less disruption from the crowd. Don't know why I expected that, just did. Hundreds of people were turned away after the gymnasium reached capacity at just under 3000 people.

Jim Moran, the 8th district Congressman, invited a local Rabbi to speak at the opening of the event and to give an Invocation. Even the Rabbi was interrupted and booed a couple of times. Throughout the evening, I counted at least 42 times when members of the crowd yelled, heckled, shouted, and created a disruption. Then there were the times where the crowd cheered in an attempt to cover the boos. And sometimes it was hard to distinguish between heckling and cheering.

I do think that Moran did a good job presenting information which is included in the health bills which have come out of 3 House committees. He says that each of these have compatible details. We also received a 5-page summary of HR 3200, America's Affordable Health Choices Act. Here are some of the highlights:

Choice. People may keep the coverage they currently have if they so choose. Nobody will be forced to switch and 90% of wage-earners will be unaffected by changes.
Cap annual out-of-pocket spending to prevent bankruptcies from medical expenses. Even in the affluent 8th district, there were 800 families who went bankrupt last year because they couldn't afford healthcare expenses.
Guaranteed coverage and no exclusions for coverage of treatments for pre-existing health conditions. Prohibition of lifetime and annual limits on benefits. Limits the ability of insurance companies to charge higher rates due to health status, gender, or other factors.
The Health Insurance Exchange is modeled after FEHBP where individuals can go online and compare plans side-by-side and insurance companies must offer coverage which meets minimum standards (most often offering much more at a competitive price). The Exchange should provide competition in areas where insurance companies have virtual monopolies.
An essential benefits package, based on standards set in the law, will serve as the basic benefit packet for coverage in the Exchange and over time will become the minimum quality standard for employer plans. Preventive services with no cost-sharing, oral health and vision for children, and caps on the expense for an individual or family for covered services in a year. Mental health and substance abuse coverage will have full parity!!
Although Moran didn't discuss it (due to the 'affluent' nature of the district), Medicaid will be expanded with new federal funding including higher reimbursement rates for primary care. The Bill caps annual out-of-pocket spending and provides sliding scale affordability credits.
It improves Medicare by narrowing the 'donut hole' in the Part D drug program. Immediate 50% discounts on brand-name drugs purchased in the 'donut hole' and the donut hole will be reduced by $500 in 2001 and it completely filled over a number of years.
Improvements in Medicare enhance coverage by eliminating cost-sharing for preventative services, improve low-income subsidy programs, promote improved payment accuracy, encourage delivery system reforms (ie. 'never event' non-reimbursements), combat waste, fraud & abuse, end Medicare Advantage overpayments, and extend solvency of Medicare Trust Fund.
The Bill requires everyone to purchase insurance. No free-riders. If individuals choose not to buy coverage, they will be assessed a penalty fee of 2.5% of modified AGI above a specified level.
Building on current employer-sponsored coverage, employers will have the option of providing health insurance for workers or contribute funds on their behalf, an amount which will be based on 8% of payroll. The idea behind the penalty/contribution fees is to provide sufficient motivations for individuals/employers to obtain/provide insurance.
Small employers (with payrolls under $250,000) will be exempt from employer responsibility. The payroll penalty starts at 2% (payrolls over $250,000) to the full 8% (payrolls over $400,000).
The Summary we were presented with also includes information regarding: Prevention and Wellness; Workforce Investments; Controlling Costs. Expansion of Community Health Centers. Prohibition of cost-sharing for preventative services. Creation of community-based programs to deliver prevention and wellness services. A focus on community-based programs and new data collection efforts to better identify and address racial, ethnic, regional and other health disparities. Funds to strengthen state, local, tribal and territorial public health departments and programs.

The Public Option:

Provides Americans a choice, like Medicare, which will be included in the Insurance Exchange.
Citizens are still free to purchase coverage from Private Insurance companies if they so choose.
The Public Option won't be "cadillac coverage" but will be a basic benefit plan.
It will provide quality preventative care from the physician of your choice.
Doesn't affect 90% of wage earners!!
Moran said to the crowd - "I know you care about our friends throughout the rest of the country and not just ourselves." - This was in reference to having the Public Option which may not directly affect the constituents in the 'affluent' 8th district. However, he did point out that in Northern Virginia there was $100,000,000 in expenses for the uninsured and in uncompensated care last year.

Following the discussion above, Jim Moran went through several "myths" floating around and balanced them with facts to clear the misconceptions. He used slides which discussed 11 individual issues. I'll reduce some of the statements presented and expanded upon by Moran:

The idea of "Death Panels" is pure nonsense. There is NO such thing. The Bill allows for reimbursement for the time the patient spends with his/her doctor in discussing preferences for agressive life-sustaining treatments, living wills, power of attorney, or other treatment chocies.
Congress currently is and will continue to be subject to federal regulations regarding employer-sponsored plans. With that in mind, Congress will be impacted as much as any other person who has employer-sponsored health insurance coverage. By 2018, employer-sponsored plans will be required to meet the minimum coverage requirement.
It will NOT result in expanded government control. Currently the insurance company holds all the power. This will put the patients and doctors in the driver's seat. Insurance company bureaucrats will not be able to stand between you and your doctor.
There is NO rationing of care. The myth is that a committee will decide what should be covered in your case. He was referring to the Health Benefits Advisory Committee and didn't clearly explain what their function would be, either that or I didn't write it down because I'm already familiar with it. [My opinion is that nobody who knows can claim that there is "no rationing of care" within any fiscally-responsible system. There is too much demand for EVERYTHING and THE BEST, and currently rationing is done through insurance companies or the ability to pay. This is a discussion which is neverending in the health policy world.]
Taxpayers will NOT be funding or providing credits for illegal immigrants. Section 246 of the Bill specifies that it will not pay for undocumented illegals.
The Public Option will NOT force employers to drop coverage and force their employees onto the same. The Congressional Budget Office says that more employers are likely to provide coverage under the Bill, due to the 8% payroll penalty/fee.
Abortion coverage is NOT mandated in any of the 3 House bills. Abortion will not be paid for by federal dollars, except in the case of rape, incest, or to save the life of the mother (which I believe is the way the law reads now). People can go to the Exchange and pick a plan which goes along with your personal preferences and views on abortion, whether the plan covers it or not.
The Health Choices Commissioner will ensure that plans meet the required minimum benefits. It will NOT choose for you which plan you must have. You make your own choices.
The Government will NOT have direct access to your bank accounts. Page 59 of the Bill allows for direct electronic payments to doctors. This is something which the doctors wanted to have included and which would minimize time between service and reimbursement from the health insurance company.
The Government will NOT mandate all benefit packages in private plans. It will set a minimum for basic services. Private plans may (and will very likely) provide plans with greater benefits.
The Government will NOT reduce physician services to all Medicaid seniors. Page 239 of the Bill adjusts how the Sustainable Growth Rate is calculated, a change which will actually increase reimbursements.

Next Howard Dean rose to speak but was immediately shouted down by a group led by Randall Terry (Operation Rescue) focused on anti-abortion. Truly rude behavior and a couple of men were escorted out, even after being offered the opportunity to speak for 5 minutes in return for silence during Dean's speech. Those from Terry's group who stayed continued to boo and heckle Howard Dean. Whether it was intentional or not, Dr. Dean kept his comments simple and to the point.

I believe that he made three points regarding the need for reform. I had significant trouble hearing his remarks.

Healthcare costs more in this country than in any other country.
We simply must cover everyone in some way.
We need to have a healthcare system based on a Wellness Model instead of an Illness Model.

Dr. Dean then told us why he believes so strong in this and told the story of a patient who came to him with increased thirst, increased urination, weight loss in February. She was diagnosed with Diabetes and by May that year had been dropped from by her insurance company. This was 20 years ago and the woman was only 35 at the time. She became uninsurable.

Then there were questions asked from constituents (however, I must have missed where one could submit a card with questions, argh). They had 3 boxes labeled: for reform, against reform, and undecided. A card was drawn from each box in an alternate fashion.

This process was less than efficient and provided a few annoying moments when folks took the opportunity to make big statements, rather than ask legitimate questions. I would say that there were really only 3-4 honest-to-goodness intelligent questions asked. One woman even came up to the microphone pretending to be the person whose name was called....and she wasn't.

Howard Dean answered many of the questions and Jim Moran answered some as well. It is no secret that Moran is one of the more liberal Democrats and our district has been gerrymandered in such a way as to consolidate the more liberal areas. The Republicans actually did this more so in 2001, creating a situation where Moran is practically uncontested and the other local districts at least have a chance of electing a Republican.

You can watch a C-SPAN video of the event here - http://www.c-span.org/Watch/Media/2009/08/25/HP/A/22434/Howard+Dean+Rep+Moran+Health+Care+Town+Hall+in+Reston+VA.aspx

Perhaps tomorrow, I will come back and try to detail some of the questions asked and the answers given. But right now, it's getting late and I've got health reform dripping out my ears. :)

Patients for a Moment at Emergiblog

Volume 1, Number 6 is hosted by Kim at Emergiblog this week.

Thanks, Kim, for including Brass and Ivory!!

Kim is a cool ER nurse who knows that even medical professionals can be patients too.

Tuesday, August 25, 2009

MS and Diet: Best Bet and MS Recovery

Continuing our discussion of MS and Diet, today’s topic surrounds the Best Bet Diet and the MS Recovery Diet. Each feature the elimination of foods which may cause allergic reactions and adhering to a more Paleolithic Diet.

DIRECT-MS and Best Bet Diet
DIRECT-MS, short for DIet REsearch into the Cause and Treatment of Multiple Sclerosis, is a charity which was formed in 1998 by families affected by MS. After his son developed MS in 1995, Ashton Embry, Ph.D. delved into the scientific literature to find the most likely cause of MS and to develop an effective treatment for his son, the result being the Best Bet Diet.

DIRECT-MS has a large collection of Journal Articles where one could spend countless hours reading up on research and offers a downloadable Cookbook.

Best Bet Diet Nutritional Protocol:
1. Eat fruits and vegetables for carbohydrates and micro-nutrients
2. Eat fish and skinless breast of chicken and turkey, for protein
3. Eat extra virgin olive oil for fats
4. Avoid all dairy, grains (except rice), legumes
5. Avoid all allergenic foods, which are identified by skin and ELISA tests
6. Avoid all red meat and margarine
7. Take a daily regime of supplements (see full post for more information)

Read this post in its entirety:

MS and Diet: Best Bet Diet and MS Recovery Diet

Monday, August 24, 2009

Web Site Story

With recent discussions of health reform efforts and personal stresses surrounding health insurance, I need a diversion.

Last month, my horn-playing blogging buddy Bruce posted this video and I smiled and laughed throughout it. Hope you enjoy it as well.

See more funny videos and funny pictures at CollegeHumor.

Sunday, August 23, 2009

Health Care Around the World

Excellent piece in the Washington Post today. Before you read this, however, please go answer some questions about your experiences and opinions at HealthCentral. Thanks.

5 Myths About Health Care Around the World

By T.R. Reid
Sunday, August 23, 2009

As Americans search for the cure to what ails our health-care system, we've overlooked an invaluable source of ideas and solutions: the rest of the world. All the other industrialized democracies have faced problems like ours, yet they've found ways to cover everybody -- and still spend far less than we do.

I've traveled the world from Oslo to Osaka to see how other developed democracies provide health care. Instead of dismissing these models as "socialist," we could adapt their solutions to fix our problems. To do that, we first have to dispel a few myths about health care abroad:

1. It's all socialized medicine out there.

Not so. Some countries, such as Britain, New Zealand and Cuba, do provide health care in government hospitals, with the government paying the bills. Others -- for instance, Canada and Taiwan -- rely on private-sector providers, paid for by government-run insurance. But many wealthy countries -- including Germany, the Netherlands, Japan and Switzerland -- provide universal coverage using private doctors, private hospitals and private insurance plans.

In some ways, health care is less "socialized" overseas than in the United States. Almost all Americans sign up for government insurance (Medicare) at age 65. In Germany, Switzerland and the Netherlands, seniors stick with private insurance plans for life. Meanwhile, the U.S. Department of Veterans Affairs is one of the planet's purest examples of government-run health care.

2. Overseas, care is rationed through limited choices or long lines.

Generally, no. Germans can sign up for any of the nation's 200 private health insurance plans -- a broader choice than any American has. If a German doesn't like her insurance company, she can switch to another, with no increase in premium. The Swiss, too, can choose any insurance plan in the country.

In France and Japan, you don't get a choice of insurance provider; you have to use the one designated for your company or your industry. But patients can go to any doctor, any hospital, any traditional healer. There are no U.S.-style limits such as "in-network" lists of doctors or "pre-authorization" for surgery. You pick any doctor, you get treatment -- and insurance has to pay.

Canadians have their choice of providers. In Austria and Germany, if a doctor diagnoses a person as "stressed," medical insurance pays for weekends at a health spa.

As for those notorious waiting lists, some countries are indeed plagued by them. Canada makes patients wait weeks or months for nonemergency care, as a way to keep costs down. But studies by the Commonwealth Fund and others report that many nations -- Germany, Britain, Austria -- outperform the United States on measures such as waiting times for appointments and for elective surgeries.

In Japan, waiting times are so short that most patients don't bother to make an appointment. One Thursday morning in Tokyo, I called the prestigious orthopedic clinic at Keio University Hospital to schedule a consultation about my aching shoulder. "Why don't you just drop by?" the receptionist said. That same afternoon, I was in the surgeon's office. Dr. Nakamichi recommended an operation. "When could we do it?" I asked. The doctor checked his computer and said, "Tomorrow would be pretty difficult. Perhaps some day next week?"

3. Foreign health-care systems are inefficient, bloated bureaucracies.

Much less so than here. It may seem to Americans that U.S.-style free enterprise -- private-sector, for-profit health insurance -- is naturally the most cost-effective way to pay for health care. But in fact, all the other payment systems are more efficient than ours.

U.S. health insurance companies have the highest administrative costs in the world; they spend roughly 20 cents of every dollar for nonmedical costs, such as paperwork, reviewing claims and marketing. France's health insurance industry, in contrast, covers everybody and spends about 4 percent on administration. Canada's universal insurance system, run by government bureaucrats, spends 6 percent on administration. In Taiwan, a leaner version of the Canadian model has administrative costs of 1.5 percent; one year, this figure ballooned to 2 percent, and the opposition parties savaged the government for wasting money.

The world champion at controlling medical costs is Japan, even though its aging population is a profligate consumer of medical care. On average, the Japanese go to the doctor 15 times a year, three times the U.S. rate. They have twice as many MRI scans and X-rays. Quality is high; life expectancy and recovery rates for major diseases are better than in the United States. And yet Japan spends about $3,400 per person annually on health care; the United States spends more than $7,000.

4. Cost controls stifle innovation.

False. The United States is home to groundbreaking medical research, but so are other countries with much lower cost structures. Any American who's had a hip or knee replacement is standing on French innovation. Deep-brain stimulation to treat depression is a Canadian breakthrough. Many of the wonder drugs promoted endlessly on American television, including Viagra, come from British, Swiss or Japanese labs.

Overseas, strict cost controls actually drive innovation. In the United States, an MRI scan of the neck region costs about $1,500. In Japan, the identical scan costs $98. Under the pressure of cost controls, Japanese researchers found ways to perform the same diagnostic technique for one-fifteenth the American price. (And Japanese labs still make a profit.)

5. Health insurance has to be cruel.

Not really. American health insurance companies routinely reject applicants with a "preexisting condition" -- precisely the people most likely to need the insurers' service. They employ armies of adjusters to deny claims. If a customer is hit by a truck and faces big medical bills, the insurer's "rescission department" digs through the records looking for grounds to cancel the policy, often while the victim is still in the hospital. The companies say they have to do this stuff to survive in a tough business.

Foreign health insurance companies, in contrast, must accept all applicants, and they can't cancel as long as you pay your premiums. The plans are required to pay any claim submitted by a doctor or hospital (or health spa), usually within tight time limits. The big Swiss insurer Groupe Mutuel promises to pay all claims within five days. "Our customers love it," the group's chief executive told me. The corollary is that everyone is mandated to buy insurance, to give the plans an adequate pool of rate-payers.

The key difference is that foreign health insurance plans exist only to pay people's medical bills, not to make a profit. The United States is the only developed country that lets insurance companies profit from basic health coverage.

In many ways, foreign health-care models are not really "foreign" to America, because our crazy-quilt health-care system uses elements of all of them. For Native Americans or veterans, we're Britain: The government provides health care, funding it through general taxes, and patients get no bills. For people who get insurance through their jobs, we're Germany: Premiums are split between workers and employers, and private insurance plans pay private doctors and hospitals. For people over 65, we're Canada: Everyone pays premiums for an insurance plan run by the government, and the public plan pays private doctors and hospitals according to a set fee schedule. And for the tens of millions without insurance coverage, we're Burundi or Burma: In the world's poor nations, sick people pay out of pocket for medical care; those who can't pay stay sick or die.

This fragmentation is another reason that we spend more than anybody else and still leave millions without coverage. All the other developed countries have settled on one model for health-care delivery and finance; we've blended them all into a costly, confusing bureaucratic mess.

Which, in turn, punctures the most persistent myth of all: that America has "the finest health care" in the world. We don't. In terms of results, almost all advanced countries have better national health statistics than the United States does. In terms of finance, we force 700,000 Americans into bankruptcy each year because of medical bills. In France, the number of medical bankruptcies is zero. Britain: zero. Japan: zero. Germany: zero.

Given our remarkable medical assets -- the best-educated doctors and nurses, the most advanced hospitals, world-class research -- the United States could be, and should be, the best in the world. To get there, though, we have to be willing to learn some lessons about health-care administration from the other industrialized democracies.

T.R. Reid, a former Washington Post reporter, is the author of "The Healing of America: A Global Quest for Better, Cheaper, and Fairer Health Care," to be published Monday.

Friday, August 21, 2009

Gratitude Friday and Health Care Questions

There are always at least two ways to look at any situation. After a really tough summer with my MS, I am thankful that I'm ready to get back to work, ie. focusing on my health and wellbeing. I will be starting back to physical therapy soon and am doubly thankful that my insurance does pay for that treatment.

I like that photo above - a horse and zebra mix. A dichotomy in one creature.

Life is full of dichotomies which coexist peacefully. Today, I'd like to do something different. I'd like to ask you to answer a few questions. The result of which will show the differing opinions and experiences of the members of our community.

Here are the questions:

1. How many doctors do you have and how often do you see each one in a year?

2. Do you have health insurance? If so, how have you obtained it? ie. through your employer, through a spouse's employer, on your own independently, through retirement benefits or through Medicare or Medicaid?

3. How much does your coverage cost? How much are the premiums? What is your deductible? How much are your copays and/or coinsurance? Do you have prescription coverage?

4. What are the top three aspects of your health care and health insurance which you APPRECIATE the most?

5. What are the top three aspects of your health care and health insurance which you DISLIKE the most?

6. What are your greatest CONCERNS when it comes to changes in how health care is provided (ie. delivered, financed, regulated)?

7. What are your greatest HOPES when it comes to changes in how health care is provided?

Bonus questions:

Do you know how many legislative health reform proposals have been introduced in Congress this session (in the US only)? Have you read any of the proposals? If you were "ruler of the world" how would you change things?

Please keep the conversation civil. No talk of "death panels" or "angry mobs."

I thank you in advance for you responses. Smile

Please go to HealthCentral to comment (even if anonymously):

Gratitude Friday and Health Care

Thursday, August 20, 2009

New Blogs and Websites

Here's a new collection of blogs and websites for you to check out.

First up is actually from a familiar blogger who is reborn from the ashes. Kim of Sunshine and Moonlight has created a new home for her journey.

Please check in on Kim at My Sun Still Rises: A Journey with Multiple Sclerosis continues.....

Mamacita has started a new blog full of Multiple Sclerosis Recipes which is a blog designed to share Best Bet Diet recipes and tips.

Next week on MS Central, I'll be introducing the Best Bet Diet as well as a few other diets which are common for MSers to use in order to control their MS. Check back.

And finally, we all need to keep our cognitive skills in tiptop shape. the MS Technology Cooperative has created Brain Games for those of us with MS to exercise our memory and skills. You don't have to, but you can register at MyMSMyWay to keep personal records of your scores. This way you can compare over time.

I tested the Brain Games earlier in the summer before they were released and found it to be surprisingly challenging. Definitely worth looking at.....and playing.

Tuesday, August 18, 2009

MS and Diet: Swank, McDougall, Jelinek

Come join the conversation...

In last week’s post, MS and Diet: Should you eat low-fat to treat your MS?, we discussed the news that a clinical trial will be conducted to determine the impact of a low-fat diet on MS progression, disability, and quality of life. Below is an introduction to the three most popular diets which take the low-fat approach and each of their corresponding websites.

Read this post in its entirety:

MS and Diet: Swank Diet, McDougall Program, and Taking Control of Multiple Sclerosis

Grand Rounds is Up

Lisa at Invisible Illness Week hosts this week's Grand Rounds. She cleverly highlights 45 blogposts in a Back to School theme.

Sunday, August 16, 2009

Multiple Sclerosis Diagnosis: 100 years ago

I came across the following article in the Journal of the American Medical Association. It is part of series of articles which reprint articles from 100 years ago. In the following article, be sure to read the final paragraph which discusses the three symptoms which were required for a diagnosis of MS at that time. You might be surprised.

JAMA 100 YEARS AGO
JULY 28, 1906
COMPARATIVE FREQUENCY OF DISEASES HERE AND ABROAD.

A few years ago it was the custom to think that a certain number of diseases which are rather common in Europe occurred much more rarely in this country. Such views even crept into the text-books and became the standard teaching to such an extent that most of us have come to accept them as supposedly founded on careful observation. With the progress of time and more critical sifting of medical literature and statistics, most of these nosologic differences supposed to be in favor of this country have proved to be unfounded. For instance, there was a very general impression in this country that gout was extremely rare in America as compared to its prevalence in England. When gout was suspected here great care was exercised in trying to trace it to hereditary origin in some English ancestor, and in many minds the final diagnosis was often considered dubious unless this element could be found in the history. The statistics of Johns Hopkins Hospital, however, kept carefully for fifteen years, show that gout is not nearly so rare in the United States as has been thought, that as a matter of fact for every four cases of gout admitted to St. Bartholomew’s Hospital in London (due allowance being made for the comparative number of patients in both hospitals) three were admitted to Johns Hopkins. There is only 25 per cent. less gout in Baltimore, then, than in London, and there is no special reason why Baltimore should have more cases than any other American city. Gout, in America as well as in England, is not inherited, but is the result of the life led, as a rule.

Some fifteen years ago nearly the same state of affairs existed with regard to diabetes mellitus. Pathologic glycosuria was considered to be much more rare here than in Europe. Careful investigation, however, shows that the number of sufferers from diabetes in the United States nearly equals that of other countries, and there seems to be little doubt that we have no reason for congratulating ourselves on the greater infrequency of this fatal affection among our population. It has been pointed out that especially the terminal stages of diabetes have been masquerading as other diseases and that this has reduced the supposed mortality from diabetes. Not a few diabetics develop a terminal tuberculosis because of the readiness with which tubercle bacilli, in imitation of their affinity for sugary solutions in the laboratory, grow luxuriantly in blood rich in sugar. Practically all sufferers from diabetes present some albumin and some casts in their urine besides the sugar, and as a consequence it is almost inevitable that if the sugar should be missed for any reason the patients will find their way into the mortality records as sufferers from Bright’s disease.

A corresponding improvement in methods of observation seems to be about to eradicate another false impression with regard to the presumed American infrequency of the serious nervous disease—multiple sclerosis. While Stru¨mpel declared not long since that multiple sclerosis is one of the commonest organic diseases of the nervous system and that among the country population of Germany it is decidedly more frequent than tabes, in this country it has been considered to be a very rare disease and only a few cases of it have been reported. In the last few years, however, this opinion has been changed and there seems to be no doubt now that a number of cases of multiple sclerosis have been missed in diagnosis in this country because too much emphasis has been laid on the necessity of certain cardinal symptoms being present if the diagnosis of this affection is to be definitely made. Dr. Joseph Collins, New York, has recently1 pointed out that it is unlikely that our population is spared this affection to any such degree as our statistics would seem to indicate. Dr. E. W. Taylor, of Boston, after reviewing the American literature on the subject, takes the same stand.2 He admits that there may be some fewer cases in this country than abroad, but the affection is by no means so rare as has been said.

If multiple sclerosis is really as frequent here as in Europe, then it is important that the medical practitioners of this country should learn to recognize it, not only in its typical forms, but also in such less-developed types as still seem to authorities in nervous diseases to justify the diagnosis. While originally the three symptoms of scanning speech, nystagmus, and the so-called intention tremor, were considered necessary for the diagnosis of multiple sclerosis, it is now recognized that all of them may be absent throughout the entire course of the disease, and, as Dr. Taylor says: “If the diagnosis is not to be made without the presence of one or more of them, we shall certainly continue to overlook many cases in the future, as we have in the past.”

1. THE JOURNAL A. M. A., June 2, 1906, p. 1721.
2. Journal of Nervous and Mental Diseases, June, 1906. JAMA. 1906;47:276-277

JAMA 100 Years Ago Section Editor: Jennifer Reiling, Assistant Editor.
©2006 American Medical Association. All rights reserved.
(Reprinted) JAMA, July 26, 2006—Vol 296, No. 4 457
http://jama.ama-assn.org/cgi/content/full/296/4/457

Saturday, August 15, 2009

Blogs are Powerful Tools

As MS patients, we do a great service to others by simply talking about our experiences living with this disease. Blogs can be powerful and empowering.

I received the following comment at MultipleSclerosisCentral.com. If you have ever used Solumedrol infusions and had the yucky, penny taste side-effect, then you can appreciate the significance of finding firsthand knowledge regarding that experience.

Just introduced to Lisa and this site while having my steroid infusions this week (had it done about a year ago and this is my second try). I told the nurse, who called the Dr about the immediate metallic taste. Both said they had never heard of it! I also had it last year. The nurse passed this on to the hospital druggist who also said she had never heard if it.

Well, on my second morning of treatment this week, she came up to me with pages printed up from Lisa Emrich and The Beginners Guide to Solumedrol! So nice to know I was not imaging this! What a wonderful thing that this woman took the time to google this and come to me. So I have come equipped with my Jolly Ranchers which truly helped!

Was dx'd 13 years ago, but for most of those years took my Avonex shot every week, but did not really affect my daily life. Now I have to use the cane always and MS is really a part of my life. BUT I WILL NOT MAKE IT MY TOTAL LIFE!!

Makes me feel useful and helpful. :)

Thursday, August 13, 2009

Carnival of MS Bloggers #42

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

Weight, Death, and SSDI

MS and Fat by Christina, submitted by Barbara

When Marianne asked me if I would like to write a piece for The Rotund, I started to freak out. Of course I am honored to have the invitation, but I haven’t written about being fat in a while and wasn’t sure I had something coherent and concise to say. But the truth is, I live as a capital-F Fat woman everyday and in every single aspect of my life there is conflict with that, including my Multiple Sclerosis (MS).

Diagnosing MS can be very difficult due to the wide range of non-specific symptoms. Most people with MS report having symptoms for years before getting a real diagnosis. For me, it has been at least 6 years since I first showed signs, yet I have only been diagnosed for 4 months.

One of the major hurdles for me being diagnosed is because I am Fat. No, the hurdle is not my beautiful 300-lb body. The hurdle is the intense, institutionalized fat-hatred common in the American medical establishment. Thanks to the “obesity-epidemic” whenever I visited a doctor, the cure to all my worries was weight-loss. Whether it was burning pain in my legs, numb fingers, exceptional fatigue, and even blindness in my left eye, according to the doctors, all I needed to do was drop a few (or 50) pounds and it would all go away.

I actually did it, too. I figured, it couldn’t hurt. But it did. I was so focused on getting rid of my symptoms through weight-loss that I ended up doing real damage to my body and mental health. And surprise, surprise, even after significant weight-loss, my symptoms were just as bad, if not worse. You wanna know why? Because MS has nothing to do with weight.

After getting my diagnosis, I shared all these stories with my neurologist and he was shocked. He couldn’t believe that other professionals had completely ignored my classic symptoms and recommended completely unrelated treatment. “It’s like treating a broken leg with rash cream,” he said. He really has no idea how true and common that statement is for fat people around the world. Even when a person doesn’t have all the “obesity-related illnesses” some doctors can’t see past the fat.

Unfortunately, even with the diagnosis my fat becomes a topic of conversation. Just recently I had two occasions of “OMG you’re fat you need to lose weight!” My favorite response is to chuckle and say, “No thank you, I like being fat.” And once I toss a little HAES their way, they get over the hoopla, start to listen, and treat my symptoms, not my appearance. Because the truth is, weight has nothing to do with MS. My symptoms and the treatment dosages would be the same whether I’m 300 pounds or 103 pounds.

So, it would be nice not to be told to lose weight all the time. I’m over being judged by the way I look and am ready for medical professionals to accept every part of me, listen to the words I say, and provide me with appropriate treatment options. Because I deserve it.

Summer Darkness

Better Forget
by Mary E. Gerdt
all rights reserved

Hot and sticky.
The weather had finally changed from the bitter cold to now the unbearable heat.
How are we to continue to tolerate this misery?
My sweat stung my eyes as I looked to the far horizon. I shook my head to refocus.
No sign.
I look in the opposite direction.
Nothing.
Don’t think about thirst. Those thoughts would not leave me alone.

Pain.
Sometimes sharp. Sometimes dull.
Sometimes pleasurable in a sick sort of way.
Pain better than thirst.

Voices.
Were they real?
Are they friendly?
They are too far away to tell.
My voice will not respond.
I am so parched.
A little squeak.
Smaller than a mouse cry.
Smaller than a mosquito buzz.
Surely they cannot hear me.

Lights.
Are they real? Is that the sun? Or some delusions.
They hurt my eyes but I want to stare at them.
They have rings around them. Halos.
Am I dead yet?

Dizzy.
How can I be dizzy lying down?
I feel I am floating but this hard ground reminds me I am on the desert floor.
A sore nags at my back side. Pain again. Stinging.

Rushing
I feel I am rushing here and there. Flying in a way.
No pain for a minute.
Flashes and needles and little noises.
Beeping noises like a smoke alarm.
Loud then soft.
Soft then loud.

Sleeping.
How could I sleep when I am dying?
Wasting living time.
Why not when it hurts so much to be awake?

Movement.
I can’t move.
Something must be broken.
Pains here, then there, then gone again.
If I could raise an arm I could call the voices over to help.

Crying.
I feel tears drop like rain. Little sad voices overhead. Is that an angel?
Pain then none.
Sleep.
Let me go.

Remember.
Remember when I was alive and well and fighting the battles of life.
Remember when I smiled and laughed and cried and wondered.
When we loved and were loved and lost and gained.
And

Forget
Those days in ICU when my parched bloated body looked horrible.
When you saw my pain in grimaces and questioning looks.
“Why me?”
When you wondered if I had pain, was dizzy, could I cry?
Yes, but forget those days.
Better you forget.

notes: This poem refers to my projection of what an ICU patient experiences after 8+ years as an ICU nurse observing all forms of illness, delirium, end of life. There has been much MS Blogger activity discussing end of life issues. This poem is one of my imaginary ends. Not good nor bad, I guess it is some of both. mary

A Flawed System
by Jaime

This system we have is flawed! It is not right! I understand that there are a lot of sick people in this world and the government can't afford to pay for each one of them, but there has to be a better way. We would not be on SSDI if we did not have a medical reason to do so, so why is medical not provided right away? A 2 year waiting period is not acceptable! I would not care that I have to pay a deductible, but when your income is cut in 1/2 or more because you become disabled and have to go on to SSDI to begin with and then they want you to pay another 1/3 of that just to obtain medical...that does not leave you enough to support your family. That is poverty! We deserve better than that! That is not why we worked so hard and paid in taxes, so that when we became disabled or if something happened to us we could be at poverty level. That is just NOT okay!

It seems to me that the system needs to be changed. I just don't know where to begin in starting something like that. It is not right that there are hundreds, maybe thousands of capable people out there living off of our welfare system because they don't have the qualifications to obtain a job, or because they are lazy. I am not saying every person on welfare should be thrown off...I know that some states have systems in place (Utah did it for my sister when she applied for her disability) that you go on welfare while your application is in, but once you are approved they take your lump sum to pay back what you got for welfare, so at least this gets paid back. I am sure there are other reasons someone would be on welfare that may be justified, I just don't know. I just have a problem with the number of people who are perfectly healthy and capable of getting a job and don't, but soak up the resources that prevent people who actually need them from getting them. This just pisses me off!

Like I said though the system is flawed! It does not seem to me that it is right that someone who lives in NYC on SSDI and is single gets the same amount as someone in S. Dakota who is also single. Obviously the cost of living in NYC is much more expensive and so for the system to be fair things like cost of living should be taken into consideration....they aren't! This goes the same for SSI (although it does not matter if you are single or not because there is just a flat rate for SSI. It doesn't matter how many people are in your family). For SSDI you can claim your spouse and/or children also up to a specified amount, so there is a little more you can get if you have a child or if you are married, but it still is not much and they do not take into consideration anything like cost of living. Also, if you are awarded SSDI you do not qualify for medical coverage for 2 years and then you only qualify for Medicare, which is not the greatest coverage (but, it's better than nothing). SSI people automatically get Medicaid coverage which covers them at 100% (depending on the state they may have a small copay). This piece of the system I have a hard time with also. I think it is great that these people who are on SSI have Medicaid coverage. They did not ask to be disabled and it is not their fault they were unable to work and pay in taxes, however, for those of us who did work and pay in taxes, we should be eligible for medical also and immediately. There should be one system. The system I think should be evaluated based on a number of issues. They should take into consideration the illness, type of disability, need, cost of living in the area, income, family composition, if any health care is available (some people may have coverage available through a spouse but refuse it because they have Medicaid/Medicare through SSI/SSDI), etc. In order for the system to work properly it has to be based on each individual situation. You can't take a group of people from different areas with different disabilities and lump them together as one situation. That just does not work! My problem is...where do you even begin changing such a flawed system? I have no clue!

I have tried to contact my state representatives...that seems to do nothing (they were nice enough to give me the phone number for my drug company - Biogen, however, lol and tell me that they get these calls all the time). I even called a lawyer friend of the family that specializes in SSI/SSDI claims and was told that there is not much that can be done to change the system except to contact the state representatives, which I had already done. Talk about frustrating. How do you fight such a large system? I have been thinking about this a lot over the last couple of months (kind of in the back of my mind) because I feel like there should be something that can be done! I mean, if the state representatives office "gets lots of these types of phone calls" and even have the drug companies phone numbers on hand...that makes me think I am not the only one who is frustrated with the system. I am not the only one who has worked, paid in taxes, become disabled, only to be thrown into a system that doesn't care enough to want me to be able to maintain my health or support my family....after I worked to pay into that very system. So...I have been thinking....how did the people come together to fight and get the Family Medical Leave Act of 1993 created? That is what we need to do! That happened out of Washington State (where I live) you know. Somehow I need to find others, and we need to come together and fight this! I just need to figure out how to go about doing that...and the reality is, it won't fix my current situation. I will probably have used up my full 2 year wait period and will already be on Medicare by time we could get anything accomplished (if we were to even get it done) but if we could get it done...just think how many other hard working MS'ers who are currently paying taxes that may one day have to go on SSDI it could benefit! Not to mention all the others with other disabilities. That would be a great thing!

This concludes the 42nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 27, 2009. 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, August 25, 2009.

Thank you.

Comments for this post.

Wednesday, August 12, 2009

Getting Squeezed

Because the drug benefit for individual policies is capped at $1500 annually.

How do I get Copaxone if insurance doesn't cover it?

I have to qualify for assistance from NORD which administers the PAP.

How do I do that?

I must earn less than 200% Federal Poverty Level (FPL) and can't have significant amounts of money in savings.

How much is 200% FPL?

This year (2009), it is an Adjusted Gross Income (AGI) of $21,660.

For more on this story, see The Value of Money or Value of Health: What Do You See?

Now, to be fair, the $5172 in insurance premiums will not be 24% of my 'total income.'

Since I'm self-employed, I get to deduct the amount spent on health insurance premiums before income taxes are calculated. So it's a minimum of 19.3%, after Social Security/FICA tax is accounted for and before the AGI is calculated.

But, please tell me. Who can afford to spend 19-24% of the highest level of income they can afford (or are allowed) to earn for health insurance premiums?

And let's just say that for 2008 I did earn considerably less than 200%. In fact, $5172 really would be closer to, if not more than, 25% of total income.

According to proposed health care reform legislation, affordable premium rates for someone with my income level would be closer to 5% of income AND I would very likely have coverage for my medical needs, including pharmaceuticals.

Update: Now it looks like the Public Opinion just might get dropped during negotiations in Congress. Sigh.

Tuesday, August 11, 2009

MS and Diet: Should you eat low-fat to treat your MS?

Bring up the topic of complementary and alternative treatments for multiple sclerosis and you just might start a controversy. However, what’s so controversial about maintaining a low-fat diet? Sounds like a good dietary recommendation to me.

One approach to managing MS is through the use of diet, in addition to, or in place of traditional treatments. So why aren’t we all on a strict regimen and measuring our dietary intake against a widely publicized recommendation?

A simple reason may be that there is more than one “MS Diet.” Another reason may be that there is little clinical research into the the impact of diet on MS progression and symptoms. But soon that will change.

Researchers at Oregon Health & Science University (OHSU) are launching a first-of-its-kind research study aimed at determining whether a low fat diet is beneficial to patients with multiple sclerosis. In addition to tracking each patient's MS symptoms and examinations by a neurologist, researchers will try to determine the physical impacts of a low fat diet on the brain through the use of MRI.

Read this post in its entirety:

MS and Diet: Should you eat low-fat to treat your MS?

Monday, August 10, 2009

Educate, Encourage, Empower

Recently, I was invited to travel to HealthCentral’s New York office to participate in an on-camera interview as part of Johnson & Johnson’s global video campaign. Joining me were three other Patient Experts from different HealthCentral sites. I can't recall verbatim everything we talked about, but here are some questions and thoughts I had discussed that I'd like to share with you:

1. How important is it for patients and/or caregivers to become active participants in their health care?

It is imperative that we, as patients, take an active role in our own health care, which includes educating ourselves, working with our medical providers in making appropriate decisions, and following through with treatment choices. After all, it is your own body, mind, and spirit that is at stake as well as your current and future health.

2. How has the Internet served to empower patients when it comes to managing their health?

The power of the internet lies in the immediate access to information that provides an individual with a wide variety of opinions and facts when it comes to managing their health or illness. Whether from the National Institutes of Health, the Arthritis Foundation, the Johns Hopkins Arthritis Center, the National Multiple Sclerosis Society, or patient blogs and online health communities, reliable information and personal support ultimately empower patients in making their own choices.

3. What is it that motivates you to join the conversation with online health seekers?

Please read this post in its entirety and leave your own thoughts:

The Power of the Patient: Educate, Encourage, Empower

Sunday, August 9, 2009

Three Musketeers (sort of)

Musette is Queen of the Manor.

Here she is caught in the act of sitting on the banister at the top of the stairs. Not her Mom's favorite place to find her.

Musette is certainly the musical cat as she often chases me downstairs to the music studio to sit in on lessons. She has even had the audacity to steal me chair when I've sat at the piano to give a demonstration.

Poor girl, though, has had fewer lessons to attend since it is summer time. Do you suppose that I should let her know that after this week there will be NO lessons until after Labor Day?
**************************************************************************************

Mr. Pippin is in the Basket, again.

This is his favorite spot by far - the laundry basket on the landing.

Yes, that is a huge pile of towels hovering behind him and a vase of fake flowers which has fallen over much too many times.

This particular basket has resided in the same location for more moons than I can recall. But it certainly makes for a comfy bed.

In the next photo, it almost looks like Mr. Pippin is trying to warn his sister that Mom is on the way. But, really, he was just in the middle of a yawn.

Pippin is my sweet little man.

**************************************************************************************

And what was our 'little ghost' Oscar doing during the shenanigans?

Why sleeping under the dining table, that's what. It's hard to believe that Oscar has been part of the family for over two months now. And during those two months, he has grown!! He no longer looks like a kitten and has gained about 2 lbs.

[Reminder: the vet estimated that he was 1-2 years old based on the development of his teeth. He was severely underdeveloped and underweight.]

Oscar is our chow-hound. He's the one who keeps track of the food bowl and seems obligated to munch anytime somebody comes through the kitchen. He has also discovered the pleasure of cat treats which happen to be located in my night stand.

We have a routine: I take my meds and Oscar gets his treat. Pippin gets his treat and Musette gets her treat. We're all taken care of before going to sleep.

Friday, August 7, 2009

Artistic Endeavour

I was playing around with an application on Facebook and created the following graphic. It was kinda fun to do and becomes obvious that I'm no great artist. LOL.

Thursday, August 6, 2009

Myelin Repair Foundation launches a Blog

Today is the official launch of the Myelin Repair Foundation Blog through which they hope to encourage more frequent, personal and in-depth conversations. Here is what MRF says about this momentous move into the blogosphere:

As you know, the Myelin Repair Foundation isn't bound by tradition. We advance treatments for MS patients. We think differently. We break down barriers.

Our blog will continue our unconventional approach. It will be a place to share our stories, our research findings and our best practices. We hope that you can be inspired, learn from our experience, and take action. This is also where you can share your ideas, questions and even criticisms.

We invite you to take part in our discussion and debate on how to streamline and accelerate the medical research process, and how to deliver new treatments or cures to patients who can’t afford to wait. We will share relevant articles, pose questions, and ask for your help in identifying resources or examples.

We are committed to being open and transparent about our organization and to fostering a dialogue with you on our blog.

If you have ideas on topics that we should explore or investigate more thoroughly, please either post in the comment section or email our team at info@myelinrepair.org. We will take every idea into consideration.

Come join the discussion and be a part of the solution!

Justine Lam
Internet Strategy Manager
justine@myelinrepair.org

Myelin Repair Foundation
18809 Cox Avenue, Suite 190
Saratoga, CA 95070
www.myelinrepair.org

Wednesday, August 5, 2009

Breaking News

I can feel the bottom of my feet. Or rather, through the bottom of my feet.

Ok, maybe it's not earth-shattering news, but a very pleasant development. I was vacuuming a bit today and noticed the softness of the freshly vacuumed rug in my living room. Then it occurred to me that I'm not sure the last time I could actually feel the texture in the rug.

So that's pretty cool.

Although now, there are some joints in my hand which are swollen and definitely sore. Thanks, rheumatoid arthritis.

Celebrating One Year at HealthCentral

Just over a year ago I was recruited to write at HealthCentral and I have enjoyed it very much. For a peek at those early days, you can find my first posts here:

The year has certainly flown by quickly as I’ve enjoyed sharing bits of my life with you. To celebrate our community and to highlight some of my personally favorite, and most useful, posts from the past year, I’ve incorporated links to the best of the best in the following piece. Enjoy.

Rest this post in its entirety:

Happy Anniversary!!