Wednesday, April 30, 2008

Unintended Consequences

My heart has been crushed and is a bit bruised.
I have not many words to say right now.

(h/t to Lisa Ann for the photo)

Tuesday, April 29, 2008

The Syringe Question Answered

Playing along at home, eight MS bloggers submitted their answers to the Trivia Question posted last week. However, two of the commenters, Charles and Jm, forgot to actually leave an answer.

The educated guesses ranged from 6 weeks to 1 year to fill a 100oz hard-sided plastic, liquid laundry detergent container with used Copaxone syringes:

Shawna said 6 weeks (42 needles)

mdmhvonpa said 2 months (60 needles)

Jeri and Miss Chris both said 3 months (90 needles)

Diane more explicitly said 13 weeks (91 needles)

And insulin-dependent Aprilmoon said 1 year (360 needles)

In repeated experience, it has taken a full 9 months to fill a laundry bottle 'sharps container' with daily used syringes previously filled with Copaxone. I once tried to stretch it to 10 months but was unsuccessful in the attempt.

Without further ado - drumroll please

The winner of the Trivia Question and the 'Sensational, Sharp, Smart Blogger Award' is Aprilmoon who said it would take one year to fill the container with syringes. Although a 1-year estimate exceeds the actual experimental outcome, it comes closest to the correct answer. Perhaps the syringes used for insulin are a tiny bit smaller than the ones used with Copaxone.

Congratulations and please collect your Blogger Award.

Saturday, April 26, 2008

Greetings from the Road

Just a quick note to say "hi" from sunny Florida. The weather has been fantastic and actually not too hot to handle.

I'm sending you this message using a cute, little computer which I purchased last week. It weighs less than 2 pounds and is the size of a book. Even better, it has wireless capabilities as does the hotel. I tried to upload some photos from yesterday's outing but it didn't take.

And...the good news MS-wise is that Baclofen really does make a world of difference. Since beginning treatment on Monday, my muscles have been very painful and aching horribly. I think that my whole body is experiencing the recovery stage typical after great exertion. The only catch is that I'm not even sure the last time these muscles were very relaxed.

So far, I have been thrilled during the times that I can tell that my calves and various muscles are beginning to let loose. We have a long way to go to determine the optimum dosage, but even a little bit of relief makes walking so much easier!!!

P.S. remember to leave a comment on last Monday's post regarding the quantity of sharps which would completely fill a 100oz laundry detergent container.

Thursday, April 24, 2008

Carnival of MS Bloggers #9 - Brain Edition

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

So have you ever planned a party, but hardly anybody showed up?
Well...this week the Carnival received a single contribution by way of the GNIF Brainblogger Blog. I decided to search for any posts related to Multiple Sclerosis and include them below. Enjoy.

"Multiple Sclerosis: Nature, Nurture, or Something Else?"
by Lindsey Kay, MD, April 9, 2008

Multiple sclerosis (MS) is a poorly understood disease that affects patients at an early age and, usually, lasts a lifetime. Factors that predispose to the development of MS include genetics, geographic location, sex and birth month, suggesting an interesting nature-nurture interaction in this disease process.

The increased rate of MS at high latitudes has been demonstrated in many studies, with those living in the Northern United States and Canada at a higher risk than those closer to the equator. This geographical influence is most commonly linked to the decreased (UV) radiation in these locations. UV light is a requirement for the production of vitamin D, and it is this effect that is most commonly thought to increase the risk of MS. In addition to affecting bone strength, vitamin D interacts with over 1,000 intracellular pathways, most of which are not well understood. Vitamin D deficiency is documented in patients living at higher latitudes, where MS is more prevalent. Conversely, individuals who work outdoors and have increased sun exposure show a decreased prevalence of MS. Interestingly, the effect of latitude on MS risk is most prominent in infancy in childhood — meaning that moving to an equatorial climate later in life is of limited benefit.
However, a direct link to early childhood vitamin D deficiency and development of MS is lacking, and there are other factors that may cause the same geographical effects. In North America, people of Scandinavian descent are concentrated in the Northern and Western areas, which are the exact locations with the highest MS rates. This suggests the possibility that genetics, in addition to environment, play an important role. Some studies have found South Asian immigrants to Northern climates to have no increased risk of MS, while others find they, or their offspring, to have increased rates of the disease. British migrants to Africa have lower rates than their counterparts who remain in the UK. Clearly there is some interplay between genetic and environmental factors.

There is seasonal variation in the development of MS, based on birth month. Infants born in May have the highest risk, while those born in November have the lowest. This phenomenon may also be explained by exposure to UV light. Women who are pregnant during the winter, and giving birth in late spring, have decrease sunlight exposure compared to those who are pregnant during summer months, suggesting beneficial effects of UV exposure in utero (womb).

Inheritable factors are also present — monozygotic (identical) twins show a higher concordance rate of the disease than non-twin siblings and unrelated persons. In addition to genetic and geographic factors, certain viruses, smoking and female sex are also associated with increased risk of MS.

Clearly we are far from understanding this disease. MS has a variety of seemingly independent factors associated with its development. In addition to the usual suspects — genetics, sex and poor health habits such as smoking — MS is also linked to what appear to be unrelated and uncontrollable factors such as birth place and birth month. The true link underlying all of these factors is currently unknown, but when it is ultimately identified may provide key insights into the pathogenesis and potential treatment pathways of this poorly understood disease.

Reference: Ebers, G. (2008). Environmental factors and multiple sclerosis. The Lancet Neurology, 7(3), 268-277. DOI: 10.1016/S1474-4422(08)70042-5

"Multiple Sclerosis (MS) Linked to Genes"
by Karen Vieira, MBA, PhD, January 26, 2008
Scientists have recently pinpointed genes that can predict who is more likely to get Multiple Sclerosis (MS). MS is thought to be an autoimmune disease, meaning the body attacks itself, and to date it affects approximately 400,000 Americans. Every week about 200 people are diagnosed with this potentially debilitating disease in the US alone. Although the most common image of MS is an elderly individual in a wheelchair, the first signs of disease (periods of dizziness, double vision) often appear in the late teens or early twenties, and twice as often in women. The patient may recover completely, partially, or not at all after this first “relapse” episode, and it is a lifelong disease. Most MS patients will get some permanent disability later on in their lives.

MS is a disease for which we have no cure, because scientists know very little about what causes it. Current treatment options can only modulate the disease or lessen the symptoms. There are generally two streams of thought in the scientific community on what causes the disease: it is either thought to be triggered by the environment, or it is thought that there is a genetic predisposition. Many scientists also propose both factors play a role, given the current evidence. For instance, in Japan, the adoption of a “Western” lifestyle starting in the 1950s has been correlated with a dramatic increase in the incidence of MS. Also, there are statistics showing that the further away from the equator, the higher the incidence rate of MS. It has even been proposed that Vitamin D, which our body produces with the help of sunlight, plays a protective role against MS. It would make sense then, that the sun-intensive equator regions would have a lower incidence of the disease.

Nevertheless, it is now known that genes do play an important role in predicting MS as well. A study spearheaded by researchers from Duke University have found that an important marker in the development and programming of the immune system called the Interleukin 7 alpha receptor (IL-7RA) strongly correlates with MS disease susceptibility. It is now being investigated whether this marker plays a role in causing the disease, providing a valuable clue as to how and why certain people get this illness. Despite the fact that much more research needs to be done, the study provides strong evidence that genetics are an important component, and point the research community in a helpful direction in finding a cure for the disease.

Gregory S et al. IL 7 Receptor alpha chain shows allelic and functional association with multiple sclerosis. Nature Genetics 2007 Sept, 39(9):1083-90.
Broadley SA. Could vitamin D be the answer to multiple sclerosis? Multiple Sclerosis 2007 Aug;13(7):825-6.
Kira J. Multiple sclerosis in the Japanese population. Lancet Neurology 2003 Feb;2(2):117-27. Review

"New MRI Opens New Doors"
by Karen Vieira, MBA, PhD, February 23, 2008
Magnetic Resonance Imaging (MRI) is an important imaging technique used in the medical field to diagnose many diseases and detect abnormalities in the human body non-invasively. In the neurological sense, an MRI is often performed to obtain an inner image of the brain if unusual activity is suspected. For example in the case of multiple sclerosis (MS), abnormal spots called lesions can be detected with an MRI before clinical symptoms occur. MRIs have advantages over other imaging methods because this system is thorough and can be used to detect small subtle changes during the early stages of diseases. One limitation is that the scans usually take several hours to complete.

Now, thanks to dedicated researchers at the University of Illinois in Chicago, the world’s most powerful MRI is ready to be used to help the first patient. The team’s machine received final approval from the Food and Drug Administration (FDA) in the cusp of the 2008 new year. With an entire journal article solely dedicated to the safety of the machine in the Journal of Magnetic Resonance Imaging, the 9.4 Tesla machine will open up a new field in medical imaging, particularly neurology.

Typical clinical MRI scanners have magnetic field strengths of 0.2 to 3 Tesla. At these strengths only the movement of water molecules can be visualized, which limits the observation of metabolic processes in the brain to abnormal cystic or tumor formations and abnormalities in blood vessels or the heart. In 2003 MRIs with magnetic field strengths as high as 8 Tesla were accepted by the FDA, but to date, the 9.4 Tesla scanner is the most powerful clinical scanner that is large enough to acquire images from the human brain.

The 9.4 Tesla MRI allows doctors to visualize molecules other than water. For example, doctors will now be able to perform sodium imaging to determine whether a brain tumor is shrinking, growing, or migrating all in one visit. Previous MRI scanning required that the patient make several trips to the hospital over a period of weeks and sometimes even months. The reason that only one visit is necessary with the 9.4 Tesla scanner is that this high magnetic field strength allows more molecules to be visualized in a shorter period of time in comparison to the lower strength scanners that are currently being used. Imaging technology is now moving towards patient studies such as sodium imaging and towards safety testing for oxygen and phosphorus imaging in humans. Researchers are hoping that this scope can even be extended to other, more rare molecules in the future.

Analyzing a patient’s metabolic pattern after the administration of a therapeutic agent will allow doctors to customize treatment plans as well as determine the optimal type and amount of drugs to prescribe their patients. There are no known harmful side effects of undergoing an MRI besides the exposure to magnetic fields which should be avoided during pregnancy. Patients undergoing an MRI procedure sometimes experience mild nausea or claustrophobia from being inside of a chamber.

Currently MRI is the preferred imaging technique in diagnosing and monitoring diseases such as stroke, tumors, blood vessel abnormalities, infections, Multiple Sclerosis, and many other neurological and non-neurological diseases.

Reference: University of Illinois at Chicago (2008) World’s Most Powerful MRI Ready To Scan Human Brain. ScienceDaily.
And that concludes the 9th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 8, 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, May 6, 2008.

Thank you.

Comments for this post.

Tuesday, April 22, 2008

Grand Rounds is hosted by Dr.Val

Dr.Val Jones who blogs at Revolution Health hosts this week's Grand Rounds (vol.4, no.31) which is organized by the appropriate emotional response elicited by each post. Although I described "Surfing the Magnetic Tube" to be humorous, Dr.Val filed it under touching. Awe, the touching humor which comes from living with MS. We can all relate to that.

Sometimes "Going with the Flow" is not Easy

I met with my MS-NP (nurse practitioner) yesterday.

For those who are new to Brass and Ivory, I finally acknowledged in early March that I was experiencing an honest-to-goodness MS relapse. I didn't even get to leave the Neurology Center from that appointment in March without signing-up for five days of IVSM (Solumedrol) in the Infusion Center.

On Day 5 of the IVSM, I was ecstatic to be able to stand-up out of a chair or the couch without struggling or pulling on the coffee table. Yeah!!! My legs had decided to work again. Standing up is such a glorious accomplishment at times.

Meanwhile, my body started feeling loose and free...much less very nice that was. Improvement continued during the 10-day steriod taper and beyond. I even regained most of my sense of balance.

About two weeks ago, only 1 month since the IVSM, I started to find climbing the stairs becoming difficult again. Then a rubber band settled around my right knee, followed by the hamstrings and calves which stayed tight and rigid, impervious to stretching or massage. Soon I found standing up to be strained again.

If any of you have sensed a bit of dissatisfaction around here lately, now you know more of the story. To be honest, I haven't been entirely pleasant to be around in real life either.

Last Monday, I expertly surfed the Magnetic Tube without a single wipe-out. Beforehand I predicted that lights might glow, but this time no enhancement occurred with the gadolinium. Perhaps that could be explained with my having waited five weeks after the IVSM treatment to get the MRI.

However my inner voice is rarely wrong and it insisted that something was amiss in that brain/neck of mine. And wouldn't ya know, that voice was correct.

Just check out this image.

What do you see? Really?!!

That's what I said too.

Guess what? We're right....

That's a non-enhancing, demyelinated lesion which spans from C4 to C6 and measuring about three centimeters. Previous lesions spotted in this area a few years ago were measured in millimeters.

The MS Nurse mentioned that, although there are a few spots in the brain, no change is apparent since the last MRIs taken in 2006. And that the brain lesions are so small that someone might only detect them if he were looking very closely and specifically for MS-related lesions.

Then we discussed my continuing relapse symptoms, the difficulties resulting from said relapse, and the frustration I'm having with the spasticity in my legs. We discussed another round of steroids, although only 3 days this time and without an oral taper.

She wanted me to start immediately, but I'm going on a trip with my Sweetie this Thursday and returning next Monday. We're headed to Florida to attend a wedding and enjoy a mini-vacation. No...I don't think steroids this week is a great idea. So I'll do it next week.

[Sidenote to my Sweetie who often reads the babbling I write here: Remember our discussion about engagements? I really would like to have the opportunity to enjoy an engagement much longer than Sean's. Hint-hint. The MS Nurse asked AGAIN if I had any good news to share. Just sharing.....]

So the nurse and I also discussed trying Baclofen to help with the nerve/muscle communication in the legs, as well as increasing the Neurontin in an attempt to shut down the inner mosh party from the waist down. Just last year, we decreased the Neurontin to help lessen fatigue. Aargh!!! But at least I did leave with five boxes (35 pills) of Provigil samples, worth almost $350.

So if I've seemed a little off...that's cause I have been...literally a little off to the right. I'm sorry. But as the EOB (Explanation of Benefit) forms start coming in for all these doctors visits, infusions, mri, more infusions, followed by more doctors visits, I'll have to give a summary of the cost of this relapse. At least nobody ever said that MS was an inexpensive disease.

Oh...and to top it all off...this happens to be a busy time of the year and I'm beginning to feel a wee bit stressed. No, make that simply more exhausted in all possible ways.

Sunday, April 20, 2008

Trivia Question Regarding Syringes

Ok...this isn't the typical Simple Life item nor a commercial endorsement for Tide. However, the bottles which hold liquid laundry detergent can be quite useful to multiple sclerosis patients.

The hard-sided plastic bottles make excellent Sharps Containers for those used syringes. Personally I use the 100oz bottles.

When the bottle has been filled to the brim, I attach the lid, tape it down tight with duck tape, and wrap it up in a couple of plastic bags... basically I tend to be a little over cautious. Then according to the county's refuse regulations, I can place the secured bottle with the regular trash pickup.

But here's the trivia question for you, my wise readers:
If the MS patient uses Copaxone, which is a daily injectable, how long does it take to fill that 100oz Tide liquid laundry detergent bottle to the brim with used syringes?
Whoever gets closest to the correct answer (as determined by my personal experience) will receive something special from me. Whatever that something special is I haven't decided yet. But hopefully, that will make this challenge all the more interesting.

Leave your answer in the comment section below. Only one answer per person, please. The pole will close at midnight EST next Monday, April 28, when I've returned from my upcoming trip to Florida.

Let the games begin!!

Saturday, April 19, 2008

President Bush Violated Federal Law? Really?

My initial reaction to the following article: GOOD!!! It's about time!

President Is Rebuffed on Program for Children
Published: April 19, 2008

WASHINGTON — The Bush administration violated federal law last year when it restricted states’ ability to provide health insurance to children of middle-income families, and its new policy is therefore unenforceable, lawyers from the Government Accountability Office said Friday.

The ruling strengthens the hand of at least 22 states, including New York and New Jersey, that already provide such coverage or want to do so. And it significantly reduces the chance that the new policy can be put into effect before President Bush leaves office in nine months.

At issue is the future of the State Children’s Health Insurance Program, financed jointly by the federal government and the states. Congress last year twice passed bills to expand the popular program, and Mr. Bush vetoed both.

State officials of both parties say the policy, set forth in a letter to state health officials on Aug. 17, has stymied their efforts to cover more children at a time when the number of uninsured is rising and more families are experiencing economic hardship.

In a formal legal opinion Friday, the accountability office said the new policy “amounts to a marked departure” from a longstanding, settled interpretation of federal law. It is therefore a rule and, under a 1996 law, must be submitted to Congress for review before it can take effect, the opinion said.

But Jeff Nelligan, a spokesman for the federal Centers for Medicare and Medicaid Services, said, “G.A.O.’s opinion does not change our conclusion that the Aug. 17 letter is still in effect.”

The letter told states what steps they needed to take to be sure the children’s health program would not displace or “crowd out” private coverage under group health plans. The White House cited the policy as a justification for rejecting a proposal by New York State to cover 70,000 additional youngsters.

What happens next is not clear. New York, New Jersey and several other states have filed lawsuits challenging the Bush administration policy. In addition, Congress may consider legislation to suspend the directive.

Deborah S. Bachrach, a deputy commissioner in the New York State Health Department, said, “The opinion from the Government Accountability Office vindicates our position that the federal government did not have authority to issue the Aug. 17 directive.”

The 1996 law, the Congressional Review Act, was enacted to keep Congress informed about the rule-making activities of federal agencies. If Congress objects to a new rule, it can pass “a joint resolution of disapproval,” which the president can sign or veto.

Under the Aug. 17 directive, states cannot expand the Children’s Health Insurance Program to cover youngsters with family incomes over 250 percent of the federal poverty level ($53,000 for a family of four) unless they can prove that they already cover 95 percent of eligible children below twice the poverty level ($42,400).

Moreover, in such states, children who lose or drop private coverage must be uninsured for 12 months before they can enroll in the Children’s Health Insurance Program, and co-payments in the public program must be similar to those in private plans.

The legal opinion was requested by Senators John D. Rockefeller IV, Democrat of West Virginia, and Olympia J. Snowe, Republican of Maine. In view of it, they urged the administration to rescind the Aug. 17 directive.

The administration told states they must comply with the directive by August of this year or else they face “corrective action.” Compliance could mean cutting back programs.

The Justice Department contends that the letter is “merely a general statement of policy with nonbinding effect,” But Gary L. Kepplinger, general counsel of the accountability office, said administration officials had treated it as “a binding rule.”

Friday, April 18, 2008


We're now into five digits when it comes to blog visitors.

I Have Been Tagged!!

Jim has tagged me

Here are the rules:
1. The rules of the game get posted at the beginning.
2. Each player answers the questions about themselves.
3. At the end of the post, the player tags 5 people and posts their name, then goes to their blogs and leaves them a comment, letting them know they've been tagged and asking them to read your blog.

What was I doing 10 years ago:
Ten years ago (1998), I was enjoying my first spring in Washington, D.C. after moving here from Bloomington, IN. I was living in an apartment in Arlington, VA just over the Potomac River from Georgetown and the Kennedy Center. I was playing 2nd horn in the Baltimore Opera's performances of Richard Wagner's Tannhauser in which the horns have very lovely parts and considerably fewer notes than the strings. That summer I walked from my apartment to the Iwo Jima Memorial to watch fireworks on the Fourth of July.

Five Snacks I enjoy:
In a perfect, non weight-gaining world:

1. Peanut M&Ms
2. Cheese Sandwich
3. Cold Diet Coke
4. Leftover Mac&Cheese, straight from the frig
5. Bananas

In the real world:
1. Bananas
2. Granny Smith apple with peanut butter
3. Almonds
4. Yogurt
5. Raisins

Things I would do if I were a billionaire:
1. Build/purchase a home in which I could comfortably have my music studio with plenty of custom storage, one which would be handicap accessible and outfitted for potential needs in the future, one which would have an au pair suite in which a college student could live in return for household duties, and one which had sufficient space for guests, friends, and children. I would absolutely continue to teach and perform.
2. Invest money for retirement and my nephews' college educations (also for my own children if I were to have any).
3. Establish a foundation which would provide financial assistance to patients such as myself.
4. Go on a real vacation!!

Five jobs that I have had:
1. At Target, floor worker in the clothing and shoe departments, often staying after store closing for at least an hour to stock.
2. Babysitter, dogsitter, and housesitter.
3. Official accompanist at a 5-week summer music festival in Tennessee.
4. Copy-cataloger and circulation desk manager in the Archives of Traditional Music at Indiana University.
5. Horn player in various orchestras and freelance groups.

Three of my habits:
1. Hitting the snooze button on my alarm several times before giving in to the fact that I must get up.
2. Drinking a glass of water each time I pass through the kitchen.
3. Working a Sudoku puzzle before going to sleep each night.

Five place I have lived:
1. Midwest City, Oklahoma, USA
2. Norman, Oklahoma, USA
3. Waco, Texas, USA
4. Bloomington, Indiana, USA
5. Falls Church, Virginia, USA

Add one new part, What do you want others to get from your blog:
I hope that visitors will find resonance in the truth and bold honesty they find here. I want others who live with MS to feel comfortable interacting within our growing MS Blogger community and to participate in the bi-weekly Carnival. Finally, I will borrow Diane's wise words: I hope that visitors do not feel their time has been wasted here.

Five People I Want to Get to Know Better:
(a nice way of saying TAG!)
But don't feel obligated! Just do it if you want to.
1. Being Ammey
2. Jenn's Journey with MS
3. Life and Times of Eric's Wife
4. Tingly Toes
5. What's Wrong with Me?

Thursday, April 17, 2008

Maggie Mahar hosts the Health Wonk Review

At Health Beat blog, Maggie Mahar hosts the Health Wonk Review, complete with snapshots of the most particularly interesting posts.

Maggie features reactions to a NYT article regarding Tier 4 drugs.

Tuesday, April 15, 2008

The Lucky Ones with Good Insurance Just May Become Unlucky

The New York Times recently published the article "Co-Payments for Expensive Drugs Soar" by Gina Kolata, discussing a "new pricing system" established by health insurers.

"Now Tier 4 is also showing up in insurance that people buy on their own or acquire through employers, said Dan Mendelson of Avalere Health, a research organization in Washington. It is the fastest-growing segment in private insurance, Mr. Mendelson said. Five years ago it was virtually nonexistent in private plans, he said. Now 10 percent of them have Tier 4 drug categories."
The concept of a 4-tier pharmacy benefit plan is not new and my health insurance policy has had that structure since at least 2000. As a self-employed musician, I purchase my health insurance independently, thus having an individual (non-group) policy with a well-known Blue Cross Blue Shield licensee in the Washington, D.C. area.

However, my insurance plan exposes the individual policy holder to the horrors of "cost-sharing" much further than the examples given in the NYT article. No matter the cost of medication, and no matter on which tier of the formulary the medication has been placed, my insurance coverage simply stops when the carrier's cost has reached $1500 each year. As demonstrated in the article, $1500 of pharmacy benefit would provide 75% of ONE month of the MS medication Copaxone.

See my previous post - The Value of Money or the Value of Health which should be amended to state that 1 ounce of Copaxone now costs $1900.

Reaction to the NYT article from MS Bloggers, Health Policy Wonks, and Medical Professionals:

Mandy at MS Maze - New York Times Addresses High Priced Drugs
"Although MS bloggers have been sounding the alarm for some time, we haven’t seen much in the mainstream press which addresses our concerns. It is important that we keep this issue on the front burner, especially as election time nears."
Jeri at Fingolimod and Me - Co-Payment for MS Drugs Going Sky High
"I am terrified about what will happen when this Fingolimod trial ends and I no longer get my medication for free. I strongly believe that the medicine is the reason for this long period of remission that I am enjoying, and the health care system is putting a price on that for me. I know it will be out of my reach once it has gone to market and I am forced to pay for it."
Doug at Shoester - In the News: Big Copays for MS Drugs
"Raising copays for a few sick people means many healthier people will pay less (duh), but, as a practical matter, also means the health insurance safety net is getting smaller."
Kevin, M.D. - New Tiered Pricing for Drugs
"Patients have been shielded from costs far too long, subsequently leading to an entitlement mentality. Health care is expensive, and people are starting to realize that with the emerging co-payment structure."
Peter Zavislak at Medical Pastiche - Solving Moral Hazard: Increase Copayments
"In the long-run, this will decrease prescription-healthcare costs by decreasing the incentives of moral hazard.

Out of control pharmaceutical usage-costs are part of the reason why healthcare is so expensive in this country, and a step such as increasing coinsurance rates is a good way to start reducing overall costs, in the hopes of putting more money elsewhere. It will be interesting to see what effects these changes will have in future healthcare."
From March, PhRMA statement on Prescription Sales Growth
“Ultimately, according to CMS, medicines accounted for roughly 10 percent of total health spending in the U.S. in 2006 – the same proportion as in 1960."
Vijay Goel at Consumer-Focused Healthcare - Tier 4 Copays: A Flawed Approach to Keeping a Lid on Drug Costs

"It makes sense that payers would want to check the growth in expenditures driven by specialty medications (estimates are the sector will increase from $54B in 2006 to $99B by 2010). Many of these medicines run in the thousands of dollars per month and have no generic equivalents. [see When Will We Have the Option of Generic MS Self-Injectable Drugs?]

Instead, the Tier 4 programs look to limit overall utilization of a helpful drug while not reigning in marginal pricing-- causing significant pain to the people most in need and not changing the incentives of the pharmacos."

Richard Eskow at The Sentinel Effect - Tier 4 Drugs: An Industry Response
"When plan designs are no longer made to change behavior, but simply to transfer high-cost items back to the insured party, that’s risk transfer and not benefit design. As a result, the insurance concept is being subtly modified - and arguably undermined."
Editorial in NYT - When Drug Costs Soar Beyond Reach
"The insurers say that forcing patients to pay more for unusually high-priced drugs allows them to keep down the premiums charged to everyone else. That turns the ordinary notion of insurance on its head. Instead of spreading the risks and costs across a wide pool of people to protect a smaller number of very sick patients from financial ruin, insurers are gouging the sickest patients to keep premiums down for healthier people."
Whitecoat Rants - Insurance Companies Deny More Care
"Does anyone find it interesting that the same patients who use those medications are the ones that tend to use more medical services in general? This whole Tier 4 pricing scheme is just a way for insurers to discriminate against patients with chronic disease."
Dr. Denny at Scholars & Rogues - Seriously Ill? Need Costly Drugs? Go Broke or Die

"The drugs covered by these Tier 4 and Tier 5 categories are expensive. So if these tiers charge a percentage of the cost rather than a flat co-pay, it can become ruinously expensive.

If you’re suffering from the relapsing-remitting (RRMS) form of multiple sclerosis, you may be taking Copaxone to reduce the relapse rate. The drug may cost nearly $2,000 a month. Your co-pay might have been a flat-fee $25 a month in a three-tiered plan. Under Tier 4 or 5, the co-pay may be a percentage of the whole cost.

At 25 percent of Copaxone’s cost, your co-pay could hit $500 a month (unless capped at a specific amount). That’s a life-altering 1,900 percent increase."

Mandy at MSMaze - MS and Stress Go Hand in Hand
"I have no choice in pharmacy for these precious injectable drugs. Insurance company allows but one, and they are an unpleasant group at best. They still wanted to charge me more than my maximum monthly out-of-pocket [which is $500 per script]. Interestingly, they wanted to charge even more than the previous month."
From February, Dr. Gross at Health Central - MS and Like Diseases Get Short Shrift in "Health Care" Debate
"We must have universal affordable specialty care for all patients with MS...a big-ticket item for seriously ill people, afflicted with a disorder whose onset had nothing to do with life style."
Merrill Goozner at Gooz News - High Biotech Drug Prices = A Failed Industrial Policy
[an article so great that I felt it deserved to be included here in its entirety]

"Insurance companies are charging many patients thousands of dollars a month in co-pays for very expensive drugs, the New York Times reported this morning. A quick glance of the list of drugs that the insurance industry funneled onto this so-called "Tier 4" co-pay list are recombinant proteins, products of the nation's biotech industry.

About half of the one dozen drugs highlighted in the graphic accompanying the article are made by Amgen and Genzyme, two of the nation's leading biotech companies. But rather than re-exploring the failures of these biotech industry giants, let's look at Copaxone for multiple sclerosis, which was the drug featured in the lead anecdote in the story and is made by Teva Pharmaceuticals, an Israeli company whose original claim to fame was as a maker of low-cost generics.

From the FDA Orange Book, we learn that the Food and Drug Administration approved this drug in 1996. From the nation's public registry of clinical trials, we learn that the primary approval trial for Copaxone (copolymer 1, a combination of four recombinant proteins) involved about 250 patients with relapsing MS, half of whom were randomized to placebo.
This trial, according to the government, was conducted at the University of Maryland on a National Institutes of Health grant with information provided by the Office of Rare Diseases at the Food and Drug Administration. In other words, taxpayers like you and me paid for the seminal research that brought this drug to market.

According to this website produced by a Brit with MS, we learn that Copaxone reduced the rate of relapses among patients taking the drug by about 29 percent. Subsequent trials, funded by Teva, showed that it was slightly superior or equal to the other drugs for the condition that are on the market (Betaseron by Bayer and Avonex by Biogen, both of which are recombinant forms of interferon). Most of these trials involved just a few hundred patients, and often did not have the statistical power to prove anything in these head-to-head comparisons.
Teva continues to fund research. Again, a quick glance at suggests most of these trials compare Copaxone to other drugs for the condition. There are also a few companies seeking to get approval for their own brands of interferon to fight MS, undoubtedly attracted by the high prices set on Copaxone. The government is also still involved. The National Institute of Neurological Diseases and Stroke (NINDS) has financed Dr. Fred Lublin of Mt. Sinai Medical School to test 1,000 patients randomized to either Copaxone, Avonex or placebo. Unfortunately, that trial, which began in 2005, won't be completed until 2012, just two years before Copaxone goes off patent.

Now let's follow the money. A drug company brings a new drug to market based on government-funded research. It charges a huge price for the drug, but since its the insurance companies money, it's everyone's money, which means it's no one's money. So no one complains -- for a while. What does Teva do with the huge cash flow that comes from selling this very expensive drug to a small population of MS sufferers? It funds clinical trials to show it's drug is superior to other in the field, which it shows, sort of. But the trials are never really good enough to prove superiority, just good enough to establish market dominance, which was probably the real goal of the trials. So the government has to sort things out, but it gets back into the game very late and very slowly. The insurance industry, fed up with paying extraordinarily high prices, starts putting the financial onus on patients.

The only justification for the high prices slapped on this government-funded discovery is that it would generate research into new drugs and significant therapeutic insights. Consumers, who paid the tab through their insurance premiums, got neither for their investment. And the government, which could have used that money and much less of it to get started earlier in funding definitive trials, now must come with another huge infusion of cash (a 1,000-person trial will cost at least $10 million) to sort out the mess.

In 1991, when then Secretary of Health and Human Services Louis Sullivan was hauled before Congress to explain why it was paying so much money through the Medicare program for Amgen's Epogen, which is used in dialysis patients, he testified that it was to show Wall Street that this new exciting industry -- biotechnology -- would generate generous returns if it came up with innovative products. Isn't it time to call a halt to this failed industrial policy, especially when it comes to drugs brought to market with taxpayer support? Surely the patients like those now paying 25 percent of the cost these drugs in Tier 4 co-payments deserve better."

Yes, I agree. We all deserve much better.

Monday, April 14, 2008

Stuff that makes life easier....or not.

Today's Simple Life tip comes from Ammey of Being Ammey. Her April 13th post, Arm Saver, discusses a kitchen item which Ammey had desired since childhood but was reluctant to purchase until recently.
I am a baker. I love to cook. It is one of my passions, and I can say that I am pretty good at it too. I make a mean loaf of Challah and Kickin’ Chickin’ Stew. I still cream the butter and sugar together by hand, I tirelessly whip the egg whites and knead the bread dough with tiny pearls of sweat clinging to my young brow. It can take me an extra 30 minutes to mix up a batch of muffins because my arm weakness requires I take a rest between adding ingredients blueberry and flour; sure, it’s daunting but I do it anyway.

Why have I done it this way for what seems like forever? There has been something missing from my kitchen all these years. That’s why.

Then the desired item found its way into Ammey's kitchen, just to be avoided for a little while. Hmmm?
I know. I deal with things in a strange way, All this excitement, and all the acceptance was overwhelming I guess. My hunny kept asking me “Aren’t you going to use it?!” Like I was crazy. Well I was crazy. I really did not want have to use it.

But after trying it out, Ammey found freedom.
I am proud to say that the love I put into my food still shines through, even when it assisted by [the mystery item]. The best part is my arms are saved, born again. I am free to enjoy what I make now vs being to tired to enjoy it from making it!

So if you'd like to know what the mystery item is, hop on over to Ammey's blog. While there, be sure to read other posts and maybe leave a comment or two.

If you have any tips on helpful, or not so helpful, items out there, please send me your recommendations via email at brass.and.ivory (at) gmail (dot) com.

Sunday, April 13, 2008

Surfing the Magnetic Tube

Which of these tubes do you like?

Monday morning I will be "surfing the magnetic tube" to get some pretty gray-scale pictures of my goofy brain. It has been 15 months since my last trip through the noisy ping-zap-thumpthumpthump-beeepbeeep-ping-zap-thumpthumpthump machine. The reason for locking my head in the oh-so flattering face cage is to take a little looksee for glowing runway lights or christmas tree bulbs.

My inner Yoda - "find changes, the magnets will. Ah, yessss."

Recovery from this recent relapse has been disappointing so far. I was so excited to be able to stand from a seated position without pulling on the coffee table or pushing off into a tucked skiers' position before straightening into an upright position. However during the past 10 days or so, the standing struggle has crept back into my legs and I'm starting to lean to the right again.

Yesterday at the solo festival event, I had to walk from one end of the school to the other several times over. It was rather exhausting and I crashed as soon as I got home. Later in the evening as I went upstairs to get something, it was as though I was climbing the Great Wall of China. Seriously, I had to lay down for quite awhile until I felt strong enough to go back downstairs to enjoy watching some TV during the rest of the evening.

I hate feeling weak!!!

I inherited these sturdy English/German thighs which should belong to someone who is athletically talented (which I'm not.) But I've always been able to depend upon these thighs, and the rest of the leg team, to be strong. Heck, in college the band marched in parades which were 3-4 miles in length and that didn't kill me. Thinking back, after such a parade I would experience tingling, numbness, and a feeling of coldness in my legs which I just figured was the sensation of muscles regaining cirulation. I didn't give much thought to it.

"Hmmm. Early MS symptoms, maybe these were."

Anyway, I'll share with you what the magnets show, especially if my brain or neck lights up and the neurologist wants to have a disease progression talk. We'll see what happens.

Friday, April 11, 2008

Say What?

Humorous Pictures
see more crazy cat pics

Well, I have a tad bit more than four years of music school under my fingers and out the bell* (BME - 4 years; MM - 2 years; DM - 4 years coursework plus research time), but the kitty's indignation is understandable.

As a professional musician, you may be asked to play many genres of music of various quality. Often you simply play what is placed in front of you, no questions asked. This is usually not a problem (unless of course you are working with an unpolished young composer who has written 'music' containing techniques and desired sounds which the instrument is hardly capable of producing without great difficulty and exponentially increased chance of inaccuracies).

As a music teacher, you are expected to encourage your young musical charges to participate in performance opportunities. One such opportunity is the annual Solo & Ensemble Music Festival, an event at which students perform a prepared selection for an adjudicator who is himself a professional on the chosen instrument.

The first of these events in Northern Virginia occurs tomorrow and I will be accompanying (on piano) each of my horn students as well as other young musicians playing various instruments. It has been a busy time rehearsing and preparing for each of these 8-minute sessions and I sincerely hope that my hands decide to communicate effectively with my brain. (Yesterday was a non-communicative day.)

Then, after Solo Festival is behind us, it is time to get serious about preparing all of my students (piano and horn) for the big Spring Studio Recital which is held on Mother's Day each year. Can you feel the tension mounting?

*reference to the sounds emitted from a french horn (which is actually not french in origin)

Thursday, April 10, 2008

Carnival of MS Bloggers #8

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

Jeri of Fingolimod and Me has been very busy and created "the frankenstein of all blog aggregators" compiled from the MonSter Blog list posted at the Carnival of MS Bloggers.

"When Blogs Collide... good stuff is bound to happen!"

This MonSter Blog Reader not only provides one location from which to read the newest posts of all your favorite MS Bloggers, there is a search function which can cull through the entire (listed) MS Blogosphere to find you the really good stuff. And... you can "get all interactive with it." Readers are encouraged to add tags and provide meaningful labels for individual posts. Jeri says, "Somewhere down the road it will help others sort things out and find things they are searching for more quickly." I think this was a stroke of genius on Jeri's part which will benefit current and future MSers.

Next, the originator of the 100+ MS Blog list, Linda of BrainCheese, and the founder of this Carnival and compiler of the expanded MS Blog list, Lisa of Brass and Ivory, have each presented contrasting (although complementary) views regarding the MS disease-modifying drugs (DMDs). In response to a request from Stu asking that bloggers post his story - My Hiatus From My MS Medication, Linda and Lisa took different approaches. Lisa asks the question, "What happens if you skip your DMD?" But troubled by an inner voice which whispered, "you don't necessarily agree," Linda writes her poignant tale in - When We Don't Agree...Entirely... - definitely a must read.

Jim of Jim's DEEP Thoughts personally discusses lifestyle changes, getting healthy, and flexible spending accounts (FSA). Swimming is excellent exercise for those with multiple sclerosis and those without.
I am thinking about my commitment to swim again and I can't wait... I won't be able to swim until I get my ear plugs that will arrive about two weeks from yesterday. Being deaf and wearing hearing-aids, I can't afford to have ear infections that I often get when swimming, so ear plugs are great investments.

I have flexible spending accounts (FSAs) which allow me to pay for prescription drugs and doctor visits with pre-tax dollars. I want to use this for [YMCA] membership and according to the benefits list, I am eligible only if my doctor prescribes for me to exercise. In 2001, the IRS released its Revenue Ruling 2002-19, which states that certain health club service fees, not including health club dues, may qualify as tax-favored medical expenses. Such services must be prescribed by a physician for the treatment of a disease, including, but not limited to, obesity, heart disease, hypertension, high cholesterol, counseling for weight-reduction, nutrition, cholesterol, or hypertension, and type 2 diabetes. Physical inactivity are associated with 23% of health plan charges and 27% of national health care charges. I say, I need help to find ways to stay active that is financially affordable. Anyway, I am going to check with my doctor and see if she could prescribe for me to join YMCA.

Focusing on a different kind of prescription, Vicky discusses SEX while providing a personal warning - "Mum, you don't want to read this one." Vicky's Mum may not want to read this, but I certainly do because I can relate to the topic.
Sex is a topic that always seems to be talked about anonymously on the MS Society message boards and seems to be something people can be worried about talking about or ashamed. I understand why in most cases but I thought I'd share my experience seeing as it is a fairly common problem for people at some stage or other of their MS.

Originally my problems were isolated to the left side of my torso and my lower legs. Then one morning I woke up and the numb feeling was all the way up to my bum and I was having to check with my hands that I was sat on the loo seat properly, I also felt like I had a permanent 'wedgy' which was really, really annoying!

I realised, having been to the loo that although I could feel the area around my genitals it was not a normal feeling - interesting I thought - but possibly not good. I went to the Dr shortly after this and was referred to a neuro - lucky me, no faffing, no 'its stress' just, go see a neuro.

I'm not sure when my other half and I next had sex but I am a big fan of getting my pleasure in - and I am not that easy to please! [...]
WHOA: We stop this important broadcast for the following announcement. The steamy contents of Vicky's Sex post from this point on have been omitted to spare the innocent, but you can certainly read all the good stuff in its entirety here. Subjects include a tongue, a pet Rabbit, naughty text messages, nookie, afternoons, orgasms, and most importantly SEX.

One commenter says, "Oh, and as a long time MSer, sex toys are a must!"

Remember, you heard it here. Sex toys are good for MSers.

New to blogging, Miriam is a Proud Mum! of three boys, six dogs, four hens, and multiple chicks ,who was diagnosed with MS on January 4, 2008. At her brand new blog, Miriam discusses a really bad relapse following a nice walk she took in the morning. I sincerely hope for Miriam that this was simply a pseudo-exacerbation which resolved itself in less than 24 hours.

Barbara of Barbara's TCHATZKAHS regularly features articles on her blog which spread awareness and knowledge on a variety of subjects. Her philosophy is described below:
There is a sin even greater than [speaking lashon hara], and one which is more widespread, i.e., the sin of refraining from informing another about a situation in which one can save him from being victimized—all out of concern for lashon hara… One who behaves in this manner, his sin is too great to bear and he violates, "You shall not stand by the blood of your brother." - Pithei Teshuvah
In "When the Disease Eludes Diagnosis," Dr. Barron Lerner discusses one of his longtime patients, Lucy, who feels she has a neurological ailment which has not been adequately diagnosed.
Although I hope to make further progress on her case, I have also told her that there may never be a definitive answer. Not surprisingly, she is feeling pretty frustrated with me.

Why do doctors and patients often approach the diagnosis of disease so differently? Part of the answer lies in the concept of triage... [...]

Patients’ frustration may rise even more when their conditions are especially obscure. I once had a patient who complained of persistent drenching sweats that forced her to change her bedclothes several times a night.

Upon learning of this problem, I first went into triage mode, ruling out possible dangerous causes, including tuberculosis, a thyroid abnormality and rare tumors that release hormones. I referred her to a gynecologist on the chance that she was getting hot flashes decades after her menopause.

When all the tests were negative, my patient was understandably upset, even angry. “No doctor that I have spoken to has been able to tell me what it is,” she said, as I remember. She even called a doctor on a local radio show for his opinion.

I recalled this story when I learned recently that my longtime patient Lucy’s new neurologist was questioning whether she had multiple sclerosis, a diagnosis she has carried for more than 25 years. Since I have known her, Lucy has had painful and weak legs that necessitate a walker.

Rather than simply corroborating her existing diagnosis, this doctor had thought outside the box, noting that Lucy’s relatively stable condition — and her lack of brain lesions on an M.R.I., a test not available at the time of her initial diagnosis — warranted a new perspective.

At first, Lucy was excited too. After all, being told you may not have a serious disease like multiple sclerosis is surely good news.

But while the neurologist had correctly questioned the diagnosis, she had a harder time finding a new one. Lucy became discouraged. “I want to know,” she told me. “I point-blank asked the neurologist, ‘What is it?’ And the only answer she can give me is: ‘I don’t know. I’m not sure.’ ”

Eventually, the neurology team decided that Lucy had an atypical form of multiple sclerosis, one that caused unusual neurological symptoms and was present in the spinal cord but not the brain. Yet the doctors admitted that this diagnosis generated more questions than answers about Lucy’s prognosis and her future treatment.

While trying to be as sympathetic as possible, I find myself reminding Lucy of the limits of certainty in medicine. Despite enormous advances in technology, some diagnoses may remain elusive. I also told her that it was highly unlikely her doctors missed diagnosing a disease that could have been successfully treated. But she remains convinced that she deserves to know exactly what she has.

So we will continue to search.
Barron H. Lerner teaches medicine and public health at the Columbia University Medical Center.

In conclusion, a post which transcends summary or explanation.


"When it comes to multiple sclerosis, I really have no feelings. No, I really have NO FEELING. None in my finger tips, none in my legs or feet or front or side; if you do not have a neurological malfunction, then you may not understand all that takes from me. Live a day in your life and imagine. Imagine the tulip petals are pretty but they are not soft and smooth and make you believe in a God. Imagine you can no longer feel the warmth of your lover’s hand in yours or the incredible love within the hair on their head.

An adorable puppy runs up, tail wagging, to greet you; and you cannot pet it or hold it like a baby in your arms. Memory tells you there is joy in the experience, but again you can not feel it. You watch as others run into the refreshing waters of a beach, but know it holds no cool wetness for you.

Your feet are in socks, shoes, yet; you must look down to be sure they are on the floor. Each step you take is risky business; you are so grateful you can see when once you were legally blind. Friends pass around towels or new sheets, a cashmere sweater or purple mink stole and all who hold them “OOOUU,” and “AHHH,” when your turn comes you force a smile for objects that are not in your memory; they must be oouuful and ahhful. It is always easier to force a smile than explain that you have no feeling because you have MS.

Okay, you can stop imagining. This is my life, not yours. It wasn’t always this way. Sometimes my desk felt like water. Sometimes my leg felt like it suddenly was immersed in water. It took me many years to understand how this was possible. Did you ever hear the expression, “Running around like a chicken with its head cut off?” My mother was raised on a farm and one of her childhood memories is of a chicken that her Pop cut off the head of and it “…chased me!” That chicken had nerve. No, it really had NERVES still firing briefly.

My nerves have gone astray. How do I get my life back or some semblance of? Dangling participle aside; no, I really mean ASIDE; I would need to remove my body from the messages that had turned me into an alien from that planet with life that we have not discovered yet. I would have to set my body aside from my brain and the system of nerves attached to it.

First: Take inventory. What is reacting to the world as it used to? I can sing, pitch perfect. I can speak and be understood by other humans, animals, and birds. But birds can’t speak…I can communicate with my eyes, my vocal tone, and maybe, just maybe, something else. I can remember. I can hear, I can see with glasses. I can taste food and liquids. I can become angry, sad, passionate, determined. I am loyal, loving, kind, generous, and HUMBLE—HA! I have my sense of humor! This list is too long. What I still have is much greater than what I’ve lost.

The answer is so simple. I must remove ME from my body.

Looking around the room, following my long-held philosophy about life (some call this religion or love of God; I don’t see myself going that high up, it is allowing fate to enter my brain and soul—being a sponge to that which is around me) to seek the answer before me, I see two helium birthday balloons clinging, unmoving, to the wall and each other. Then I look to my left and there, tied to a vase of purple tulips, is another helium balloon which is turning slowly side to side, unfettered by friction, as it is alone by no wall.

If I do not remove me from my body I will become immobile like the two balloons attached to their body’s natural reliance on the physical world to define them. They are red and green, rather boring. The other balloon, which is now practically spinning, is covered in glitter, swirls, and a shiny slice of cake with lit candle and in writing declares, “Happy Birthday.”

So, that is what I did many years ago. I separated me from my physical body. Using memories, I remembered how refreshing water is, how cuddly a puppy is and how sweet the feeling of my lover’s hand in mine.

When my left hand began to experience atrophy (tissue wasting away); and my neurologist told me it could not be helped, I removed it and let my brain take over; I learned long ago that me is in my brain. Now I tell my hand via the verbal part of my brain (left side) to place the thumb here or press the index finger there. (My left index finger just typed those last three words, something it has not been able to do for a year.)

Having my brain trace the upward movement of my right leg, I then had it go through each step on my left leg until it reached my foot---which MOVED! My problem now is this process tires my brain, which is already working with a short shift (many axons have passed away, others keep calling in sick and believe ME my brain is not happy about it), so it rests a lot; BUT it is building a new pathway every time we play the game. I can actually FEEL my brain operating. Jeopardy, Cash Cab, the first note to an unfinished song---it goes crazy! It races through “file drawers,” 100mph; until I finally have to insist it go into sleep mode so the body can rest and it is free to keep searching then. (Sometimes it gets so excited it wakes me up and the body shouts the answer to some obscure question as if I have Tourette’s.)

The body was, of course, not thrilled with what it felt was a defection by me and my brain. The body was without purpose. This caused uproar between the body and me. It felt useless and betrayed. Well, I went to sleep and let them duke it out.

In the morning the body wanted to create. I just laughed. My creativity was in acting, public speaking, a spit of writing. What did you have in mind, body? (Uh-hem.) First it wanted to color. Disaster. Then it wanted to do puzzles. Nightmare. Model building. Guitar playing. Singing, got as far as looking for instructors, advertised in papers, at colleges---no takers. My body was getting worse with each failure. Then my brain got upset and told me to start a blog. I had no idea what a blog was, but my brain assured me that it would handle everything. (Yeah, right.)

Then a writing challenge beckoned and the body wanted to go for it; the brain agreed to help out, so what choice did me, er, I have? When I write my MS seems to disappear. The brain takes over and carries me anywhere it wants. In a story I walk, run, feel a worn leather saddle or a cool spring breeze. A part of the me without MS can be in any character. I can even fly over the rainbow. There is a freedom when writing, telling a story, that releases all illness from my nerves and brain. My one finger typing was joined by another. When I am finished, there is completion and cooperation; and a sense of a job well done. MS? We had forgotten.

And there you have it, I have no feelings, but with my body, my brain and me working on our own, but together toward the goal of some normalcy, we are able to see our goal as attainable. The mind/body connection can be severed and still be two separate entities working together. Can you feel me?"

And with Diane's inspiring post, we conclude the 8th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 24, 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, April 22, 2008.

Thank you.
Comments for this post.

Wednesday, April 9, 2008

What can eat through your nerves faster than MS?

The Little Green Monster = aka Jealousy

I have a confession to make. I suffer from a Relapsing-Remitting form of the "green-eyed monster" syndrome. It's a disease which is highly embarrassing and tends to disrupt the natural balance of things - physically, mentally, emotionally, spiritually, socially, and sometimes economically.

Yesterday morning when reading posts of various MS bloggers, I came across one in particular which unexpectedly unlocked the cage of the little green monster. The subject of the post was one which I knew would be coming soon as the author had already discussed it briefly in recent weeks. But somehow the details given and manner of delivery provided nourishment to that withered beast of mine. Before I had finished reading the complete article, my little green monster had grown a foot or two and was running around the room knocking things over in a most spiteful way.

So what was it exactly that unlocked the cage? Why this post?

Maybe it was the self-proclamation of how "popular" this person's blog has become. Maybe it was the author's admission of having lurked through blogs and message boards for inspiration. Maybe it's because this blogger often speaks as with authority, sometimes uses questionable references, and happens to be still quite new to MS.

When it comes to opportunities in Web 2.0 (online social media), each person can create his/her own platform from which to speak. That is one of the cool aspects of blogging - we are each citizen-journalists here in the blogosphere. Some of us intentionally speak only to a few, perhaps just to members of our family, and some aspire to reach many thousands around the globe. Some of us seek to build a better MS community online through collaborative efforts and some of us might use our well-connected media persona to jump start our online reputation.

But what's really bothering you Lisa?

Maybe I desire greater recognition or wider exposure, I don't know. Sure enough, somebody (or multiple somebodies) at Reuters News and the Chicago Tribune have liked individual posts enough to include them on their websites as part of the Blogburst network. Of course, there is no compensation for this, only minimal exposure for Brass and Ivory. I rarely, if ever, obtain new visitors from this extra exposure to my writing as the required link back to my blog is rarely followed. To date Brass and Ivory has yet to receive its 10,000th visitor.

So what are you really feeling Lisa?

Well, since you ask....I think my little green-eyed monster is now turning into a blue-eyed monster after reading those words above. Maybe I'm sad that I haven't knocked on all the doors of possible opportunities. Maybe I'm feeling melancholy since not all of the MS bloggers out there have added Brass and Ivory to their blogrolls, thus helping to spread my reach throughout the blogosphere.

Or maybe, I was just wearing a green shirt yesterday morning, reflecting green in my eyes, and today I'm wearing blue. I've got the type of eyes which can appear to change colors depending on what color I am wearing. Or maybe, I've just chosen blue today to match my mood. I'm not sure yet.

Questions for you dear reader:

What unleashes your "little green monster"?
And what do you do to tame it and lock it back up?

Tuesday, April 8, 2008

Grand Rounds is hosted by Dr.Wes

Dr.Wes, the (a)musing cardiologist and electrophysiologist from Chicago, hosts this week's Grand Rounds (vol.4, no.29) with a decidedly cardiac theme. As my first time to submit to Grand Rounds, I'm thrilled that Dr.Wes included my post regarding Provigil's (non)Assistance Program.

Also, you must read about Kathleen Seidel, a blogger from New Hampshire who discusses issues surrounding autism at

Legal thuggery is sure to make a medical blogger's heart stop. Eric Turkowitz over at New York Personal Injury blog links to the buzz created by New Hampshire blogger Kathleen Seidel of, and her remarkable post entitled "The Commerce in Causation." Ms. Seidel is a level-headed, well-researched citizen-journalist who has tirelessly investigated the pediatric medical research conducted by Rev. Lisa Sykes, Mr. Clifford Shoemaker, and their colleague Dr. Mark Geier; their efforts to compel removal of mercury-containing antimicrobials from FDA-approved vaccines; and their "judicial advocacy" campaign.

After sharply criticizing Shoemaker's legal incentives, she received a subpoena within four hours from Mr. Shoemaker, the plantiffs' council, demanding "bank statements, cancelled checks, donation records, tax returns, Freedom of Information Act requests, LexisNexis® and PACER usage records. The subpoena demands copies of all of my communications concerning any issue which is included on my website, including communications with representatives of the federal government, the pharmaceutical industry, advocacy groups, non-governmental organizations, political action groups, profit or non-profit entities, journals, editorial boards, scientific boards, academic boards, medical licensing boards, any 'religious groups (Muslim or otherwise), or individuals with religious affiliations,' and any other 'concerned individuals.'...."

Not intimidated, Ms. Seidel subsequently filed this well-targeted motion to quash the subpoena. It's an incredible story exposes the underbelly of a potential new legal tactic that could be imposed against bloggers anywhere: issuing malicious subpoenas to quell bloggers' free speech.

More likely, as Orac points out in his "important rant," Ms. Seidel will be vindicated by a Streisand effect.

I had given little thought to the possibility that records related to (and unrelated to) my blog might be subpoenaed for any legal reason. It somehow indicates the increasing power and influence which individual bloggers are gaining in the world of citizen-journalism.

Cool but not cool simultaneously.

Stuff that makes life easier....or not.

Today's Simple Life tip come from Jenn of Jenn's Nook (posted on March 27, 2008). Her post shares an article she found on which features some cheap homemade cleaners!

source=Pantry Cleaners: Recipes for Homemade Cleaning Products
Posted December 9th, 2007 by Cynthia Townley Ewer

Taken a trip down the cleaning aisle at the supermarket lately? If you believe the ad hype, you can't keep a clean house without loading your shopping cart with a different cleaner for each surface, floor and sink in the house.

Hogwash! Simple recipes using products from your pantry make effective household cleaning solutions. An added plus: these natural products are more environmentally friendly than commercial alternatives.

Stock your cleaning tool tote with these homemade cleaning sprays and solutions to make short work of household grime--without harsh chemicals or irritating fumes.

Try these easy recipes to clean your organized home faster, better and cheaper:

White Vinegar

Mildly acidic white vinegar dissolves dirt, soap scum, and hard water deposits from smooth surfaces, yet is gentle enough to use in solution to clean hardwood flooring.

White vinegar is a natural deodorizer, absorbing odors instead of covering them up. (And no, your bathroom won't smell like a salad! Any vinegar aroma disappears when dry.) With no coloring agents, white vinegar won't stain grout on tiled surfaces. Because it cuts detergent residue, white vinegar makes a great fabric softener substitute for families with sensitive skin.

Try these recipes to harness the cleaning power of white vinegar:

Homemade Spray Cleaner Recipe

Mix in a sprayer bottle:

1 cup white vinegar
1 cup water

In the kitchen, use vinegar-and-water spray to clean countertops, lightly soiled range surfaces and backsplash areas.

In the bathroom, use vinegar spray cleaner to clean countertops, floors, and exterior surfaces of the toilet.

For really tough bathroom surfaces such as shower walls, pump up the cleaning power by removing the sprayer element and heating the solution in the microwave until barely hot. Spray shower walls with the warmed generously, allow to stand for 10 to 15 minutes, then scrub and rinse. The heat helps soften stubborn soap scum and loosens hard water deposits.

Undiluted White Vinegar

Undiluted white vinegar straight from the jug makes quick work of tougher cleaning problems involving hard water deposits or soap scum.

Use undiluted white vinegar to scrub the inside of the toilet bowl. Before you begin, dump a bucket of water into the toilet to force water out of the bowl and allow access to the sides. Pour undiluted white vinegar around the bowl and scrub with a toilet brush to remove stains and odor. Use a pumice stone to remove any remaining hard water rings.

Clean shower heads that have been clogged with mineral deposits with undiluted white vinegar. Place 1/4 to 1/2 cup vinegar in a plastic food storage bag, and secure the bag to the shower head with a rubber band. Let stand for 2 hours to overnight, then rinse and buff the fixture to a shiny finish.

Add one cup of undiluted white vinegar to the laundry rinse cycle instead of commercial fabric softener. White vinegar softens clothes and cuts detergent residue--a plus for family members with sensitive skin.

Baking Soda

Baking soda's mild abrasive action and natural deodorizing properties make it a powerful replacement for harsh commercial scouring powders. Put baking soda to work in your organized home:

Sprinkle baking soda onto a damp sponge to tackle grimy bathtub rings, scour vanities, or remove food deposits from the kitchen sink. For tougher grime, make a paste of baking soda and water, apply to the tub or sink, and allow to stand for 10 to 20 minutes. Dirt, soap scum and deposits soften and are easier to remove.

Slow-running drains? Keep bathroom drains running freely by pouring 1/2 to 3/4 cup baking soda into the drain, and dribbling just enough hot water to wash the solution down. Let stand for 2 hours to overnight, then flush thoroughly with hot water. The deodorizing effect is an added bonus! [Do not use this method on blocked drains.]

Rubbing Alcohol

Rubbing (isopropyl) alcohol provides the base for an evaporating cleaner to rival commercial window and glass cleaning solutions. Use this glass cleaning spray recipe for windows, mirrors, chrome fixtures and for a shiny finish on hard-surface ceramic tiles:

Homemade Glass Cleaner Recipe

Mix in a sprayer bottle:

1 cup rubbing (isopropyl) alcohol
1 cup water
1 tablespoon white vinegar


A strong alkaline solution, clear, non-sudsing ammonia creates stronger window and all-purpose cleaning recipes than acidic vinegar.

Choose non-sudsing varieties of household ammonia for these cleaning recipes. Suds may look like they're working, but they're tough to rinse and remove.

Try these formulations for spring cleaning or tough chores:

Strong Glass Cleaner Recipe

Mix in a sprayer bottle:

1 cup rubbing (isopropyl) alcohol
1 cup water
1 tablespoon clear, non-sudsing ammonia

Strong All-Purpose Recipe

Mix in a sprayer bottle:

1 T clear, non-sudsing ammonia
1 T clear laundry detergent
2 cups water

Furniture Polish

Most of us no longer use hard-to-apply furniture wax, but rely on oil-based polish to keep furniture protected and shiny.

Our "salad dressing" version avoids the danger of silicone oil, found in most commercial polishes and sprays. Silicone oil can penetrate tiny cracks in furniture finish and enter the wood, causing problems in the event refinishing is needed. Lemon juice dissolves dirt and smudges, while olive oil shines and protects the wood:

Furniture Polish Recipe

Mix in a sprayer bottle:

1 cup olive oil
1/2 cup lemon juice

Shake well and apply a small amount to a flannel cleaning rag or cleaning cloth. Spread evenly over furniture surface. Turn cloth to a dry side and polish dry.

Mix in a sprayer bottle:

1 T clear, non-sudsing ammonia
1 T clear laundry detergent
2 cups water

Furniture Polish

Most of us no longer use hard-to-apply furniture wax, but rely on oil-based polish to keep furniture protected and shiny.

Our "salad dressing" version avoids the danger of silicone oil, found in most commercial polishes and sprays. Silicone oil can penetrate tiny cracks in furniture finish and enter the wood, causing problems in the event refinishing is needed. Lemon juice dissolves dirt and smudges, while olive oil shines and protects the wood:

Furniture Polish Recipe

Mix in a sprayer bottle:

1 cup olive oil
1/2 cup lemon juice

Shake well and apply a small amount to a flannel cleaning rag or cleaning cloth. Spread evenly over furniture surface. Turn cloth to a dry side and polish dry.

If you have any tips on helpful, or not so helpful, items out there, please send me your recommendations via email.

Sunday, April 6, 2008

Can You See My Aura?

Your Aura is Violet

Idealistic and thoughtful, you have the mind
and ideas to change the world.

And you have the charisma of a great leader,
even if you don't always use it!

The purpose of your life: saying truths
that other people dare not say.

Famous purples include: Mahatma Gandhi,
Martin Luther King, Jr., Susan B. Anthony

Careers for you to try:
Political Activist, Inventor, Life Coach

Saturday, April 5, 2008

Visiting the Vampires - Praying for Blood

For those who sent well wishes yesterday, I really appreciate your concern and support. I am feeling better today and my Sweetie and I even went out for lunch and ate some fabulous Indian food. Yum.

Yesterday afternoon, however, is a different story. I went to the Quest lab to have blood drawn for routine tests. Since I take a chemotherapy drug for rheumatoid arthritis, we have to make sure that my liver is happy.

I went to my favorite lab only to find that the ineffectual vampiress was on duty. Darn. (Note: I had formed a wonderful relationship with the previous phlembotomist who ALWAYS performed a successful stick on the first try.) Well, last month time I let this woman try three times, unsuccessfully, before choosing to wait for her colleague to return from break to stick me twice more.

Usually when the phlembotomist (tech) starts looking at my hands for veins, that's when I say, "whoa, not the hands, they NEVER work!!" It doesn't matter that I point directly to the one really good vein I have which runs alongside a tendon deep in the center of my elbow. Of course, there are a few other spots which have been known to produce blood in quantities enough to fill a couple of tubes but they're not nearly as reliable. The one thing I absolutely hate is a cocky tech who "blows through" a vein and produces one lonely drop of blood in the needle. This type of tech would also be the one to go on a fishing expedition in search of elusive blood from a tiny vein which probably just collapsed in fear or dred.

Surprise - this is exactly what vampiress proceeded to do.

So rather than let her conduct an endless number of sticks, I asked to take my orders to a different lab as she was the only one on duty. I quickly hightailed it to another lab in a nearby medical building. OH NOOO... They were just about to lock the doors, so I begged and begged. Very pathetic I know, but I have to time the blood draws carefully to get really good readings. Either that or delay taking my weekly dose on the designated day, and after yesterday's discussion I think we can agree that it's important to stay on a regular schedule with meds.

I presented the first tech (yes there was more than one) with my good arm and pointed to the best spot. She was not convinced that it was a good vein, checked elsewhere, and tried a different one. And do you think that there was blood? Noooo. So then she wanted the other arm and I dutifully presented it to her. She thought maybe there was a vein, thought maybe not. Another tech came over, checked herself, and pointed to yet a different spot.

Another stick - another bloodless failure.

She started looking at the hands and I said, "Um no, not the hands." Tech number two didn't volunteer as she had already pointed out her top location for a stick. So tech number three was summoned and he looked first at the hands. And what do you think I said? He even contemplated my wrist...again uh-uh. "My best vein is right here, down deep, running right next to the tendon, really, trust me it's there." He takes a quick look at my left arm which had already been pincushioned sufficiently. And I repeat, "the best vein is here and the next to best vein is here," pointing to the appropriate spots.

Surprisingly, these two spots remained virginly unstuck even after going through three techs already. This guy tightened the tourniquet and waited for the blood to plump up the veins while I squeezed on a soft ball. He took a leap of faith and went deep. Hallelujah - Success!! The other two techs watched closely and were amazed that blood flowed quickly enough to fill the appropriate lavender and red lidded tubes. The tech suggested to me that next time I should point out my good vein (just as I had to him and three other ladies yesterday) and suggest tying the tourniquet really tight...oh...and to mention that the vein is really deep and runs next to the tendon.

If only people would listen to me, especially when I'm being very pleasant, upbeat, and trying to stay as relaxed and non-fainty as possible. I'm sure that my arms would appreciate it.