Saturday, May 31, 2008

Home from the Big Hike

Diverting a little from our unraveling story, I just wanted to welcome my Sweetie home.

He returned from a hike along the West Rim Trail of Pennsylvania's Pine Creek Gorge. This area is known as the 'Grand Canyon of Pennsylvania' and sports some great vistas. They also added a shorter trail to create a 50-mile/5-day hike.

On day 6 (yesterday), the group canoed down The Pine Creek and biked another 17 miles or so along the Pine Creek Rail Trail.

Today, we have lounged around, played with the quickly growing kittens, and plan to go out to dinner soon. I think we may actually go see a movie, Indiana Jones I believe.

It's almost like a date or something. Very nice. But don't worry, you'll be reading about my Metal Taco soon.

Friday, May 30, 2008

Tears on My Pillow

[Begin reading with Eyes in the Back of My Head]

One of the most striking features of IU-Bloomington is the beauty of the limestone buildings. On the left is Merrill Hall, one of six buildings on campus which house the Jacobs School of Music. Isn't it pretty at springtime?

During the same time I was dealing with the pain in my neck, I began experiencing weepiness, sleepiness, and fatigue. It got to such a point that I dragged myself into the Student Health Center. After talking it over, the doc suggested that I was sad from Seasonal Affective Disorder (SAD). I grew up in central Oklahoma where the sky is big, the sun is strong, the buildings are brick, and winter flowers bloom. Admittedly, those beautiful limestone structures were looking bleakly gray as they matched the constantly oppressive gray skies during those much too short days of late winter.

The doc thought that three months of a low dose of Zoloft would help carry me into springtime where colors and light flow freely. He also suggested that I could talk to someone in the Counseling/Psychological Services Division. That sounded like a good idea, especially since I was dealing with so much at one time.

Early in our visit, the psychologist expressed that she understood just how rigorous and competitive the doctoral music program is. She acknowledged that the level of sunlight could be affecting my mood, but she was more interested in the stress of academic life. When she suggested that the program might be more than I could or should put myself through.....well, I was p*ssed. She didn't know me and I lost any faith in her. I didn't return.

During the rest of my time in Bloomington, I cycled between toughing it out in silence and dragging myself into the Student Health Center to resort to a brief round of antidepressants to try to lift me out of the wet darkness. I think it was the third time I sought help that the doc suggested using the antidepressants for a full year in an attempt to level out the cycle which was being to look more like Major Depressive Disorder (MDD).

Looking through those Eyes in the Back of My Head, I'd be curious to know the level of Interleukin-6 (IL-6) protein in my blood at the time of that first depressive episode and at the time of each pulling riptide of darkness. We already know that inflammation plays a significant role in the development of multiple sclerosis, but I wasn't aware of its connection to depression until reading an article at BrainBlogger, Inflammatory Markers Altered in Depression and Suicide.

As recently as 2005, Johns Hopkins Researchers Discover Key Protein Linked To Transverse Myelitis and Multiple Sclerosis.
"IL-6 is a chemical messenger that cells of the immune system use to communicate with one another. One of the cell types injured by high levels of IL-6 includes oligodendrocytes, which help produce the protective myelin sheath coating around nerve cells. The findings offer one possible mechanism responsible for demyelinating disorders, such as TM and MS, and may aid in the development of effective therapies against these disorders, the researchers say."

So not only do Transverse Myelitis and Multiple Sclerosis patients have in common elevated levels of IL-6, they share that characteristic with non-suicidal MDD patients. We know that depression can be a symptom of MS and that MS patients experience depression at greater occurrence than the general population. But isn't it interesting that they have inflammation in common.

This is starting to make sense to me. But at the time, I thought it was a sign of personal strength the longer I went without breaking down and reaching for the antidepressants. I'm much wiser now.

Next: My Horn, The Metal Taco

Thursday, May 29, 2008

A Pain in My Neck

[Begin reading with Eyes in the Back of My Head]

At the age of 23 (practically 24), I moved to Bloomington, Indiana, to begin work towards a Doctor of Music degree at Indiana University. If you've heard anything about the IU School of Music, then phrases like 'meat grinder', 'the factory', 'competitive' or 'cutthroat' come to mind. Now known as the Jacobs School of Music, it hosts more than 1600 students with about half being undergrads. Last year only about 20% of incoming freshmen who applied were accepted.

During my first visit home for Christmas break, my mother and I were driving home from a local mall are were rear-ended while at a stop. My head was turned as I was speaking with my Mom when the woman behind us hit the bumper while going about 5-10 mph. Not terribly fast, but fast enough to give me a good whiplash injury. I treated it conservatively at home and returned to school on schedule. However, I was having a hard time of it.

Back in Bloomington, I sought the expertise of a chiropractor who proceeded to do all the customary snaps, cracks, shocks, and massages. But relief was never sustainable. The pain did subside but I began having difficulty concentrating and experienced some vision problems. During the Christmas break, I had visited my opthamologist for the annual routine stuff and had received an updated prescription for contacts. I wondered if maybe the power were a little off.

So into the IU School of Optometry Eye Care Clinic I went. It's interesting when you go to a teaching facility for healthcare; often you will undergo duplicate testing for the benefit of clinical practice and opportunity for instruction. But I was the pro, having been indoctrinated to the eye care scene since the ripe age of four and blessed with coke-bottle glasses since adolescence. The warning given each year was to seek treatment immediately if new things developed, such as flashing lights, sudden blurriness, or unexplained changes in vision, as they can be signs of retinal detachment. Retinal thinning and the subsequent detachment are more common in folks as myopically-challenged as myself.

My actual visual acuity was fine; I passed the color tests; and the eyeball anatomy checked out fine. There was the issue though of the slightly larger appearance of my right pupil. Hmmm. Had that always been the case and I never noticed or was this something new? Off to find old pictures of myself to bring into so that the difference (if any) between my pupils could be measured at a previous point of time. Well, it was hard to tell and inconclusive at best.

What the optometry doctors/students determined was that my eyes were not focusing at the same rate which was causing my complaints. So they provided me with a visual device with which to 'exercise' my eyes in focusing and a pair of reading glasses to use when studying. Neither intervention helped and seemed to make matters worse.

I continued to have headaches, vision problems, and difficulty concentrating, all of which made pursuing academic endeavors rather challenging. Due to lack of improvements, or maybe even worsening of symptoms, the doctor wanted a radiologist to get a real good look of my intelligent brain. So during spring break in March, I took the doctor's order to the new MRI clinic in my hometown.

Turns out I did NOT have a tumor, but I also did NOT receive any answers behind the cause of my complaints. What I did get was a perfect picture of one contact lense on the eye which must not have flinched during the procedure. Pretty cool snapshot.

When the semester was over, I went home to Oklahoma and visited my father's chiropractor who took some x-rays and determined that my 'head was not on straight' - seriously that's what he said. He said that the previous chiropractor had made things worse by eliminating the natural curve in my cervical spine and leaving me with a substantial kink (my phraseology) at the base of the skull. I went to him during my summer break on a regular basis for treatment, primarily addressing the musculature of my neck, jaws, face, hips, and lower back. Did I forget to mention that this D.O. was thoroughly versed in the Rolfing Technique? Ouch!!! but by July, I was finally feeling and seeing much better.

So let's recap: stressful and competitive academic life, whiplash, vision problems, concentration problems, headaches, chiropractors, MRI, and no definitive answers.

To be continued...

Next: Tears on My Pillow

Wednesday, May 28, 2008

Pay no Attention to that Man behind the Curtain

Prescription Project has an entertaining post on their blog, PostScript:
"The way to a legislator's heart? Caterers give it a try"

Here's a brief excerpt:

We know that pharma has long found ways to get what it wants by talking through others – physicians, say, or advisors for the FDA. But a tip to the letter-writers of the world: if you don’t want to look like you were put up to something, don’t parrot information you probably couldn’t get doing your job.

The petitioner from RestaurantstoYou moves quickly from entreating to indignant: “How could we think “the most educated people in the world, Doctors, could be manipulated by the offer of a ham sandwich and chips from a pharmaceutical or medical device company sales agent? Instead, the opposite is true. Doctors routinely ask these reps to go do more research for them, at no cost to the doctor, so that they can have additional information for their individual analysis that they will use to make decisions regarding their patients.”

Abt knows this because he says to better understand his clients, he has watched from the back of the room in admiration as the reps performed their lunch and learns. Fine.

But if you are the one making the sandwiches, do you really want to sound like you are reading off the same talking points as the state policy director for the PhRMA trade association? PostScript has been to enough hearings to know those talking points when we hear them. Sales reps with no background in science are providing valuable information about drugs that physicians can’t get anywhere else? And pasta salad.


I recommend you go read the full post, especially if you need a little chuckle.

Tuesday, May 27, 2008

Eyes in the Back of My Head

We've all heard the phrase - "hindsight is 20/20" - but what does that really mean? Are events in the past truly crystal clear when we examine them from afar?

I've been thinking about the history of my personal multiple sclerosis journey. A neurologist officially upgraded me to Definite MS in October 2005. So is that where my journey began a mere 31 months ago?

I went completely blind in my right eye for two months in March-April 2000 due to Optic Neuritis, but with "no evidence of any demyelinating disease" according to the MRI report. Was that the beginning of the road?

Or maybe during the early years of my doctoral studies when I was having such headaches and vision issues. At that time, I made a number of visits to the Optometry School on campus and underwent several tests. But no visual fields or evoked potentials. I ended up with a new pair of reading glasses to use in connection with my contacts and a simple device to "exercise" the focusing ability of my eyes.

But these devices did not really help to resolve the headaches or occasional vision problems. So came my first encounter with an MRI machine, with the goal of eliminating a possible brain tumor. No brain tumor and no answers. That was over 15 years ago.

So far the picture is still blurry. Perhaps with more examination.

To be continued....

Next: A Pain in My Neck

Universal Health Insurance Coverage a Significant Social Policy Issue says S.E.C.

This is an interesting approach to furthering the discussion of meaningful health reform on Wall Street. Shareholders exerting power to address domestic policy needs. Interesting article in the New York Times.

S.E.C. Backs Health Care Balloting
Published: May 27, 2008

WASHINGTON — The Securities and Exchange Commission, shifting its position, has told companies they must allow shareholders to vote on a proposal for universal health insurance coverage.

Shareholders, including religious groups and labor unions, have offered the proposal in an effort to draw the nation’s largest corporations deeper into a debate over the future of health care, fast emerging as one of the most important issue in domestic policy.

The S.E.C. has told Boeing, General Motors, United Technologies, Wendy’s International and Xcel Energy over the last several months that they may not omit the health care proposal from their proxy materials.

This came as a surprise to many executives, who said the agency had allowed companies to exclude similar proposals in the past.

Many companies say the health care principles are not a proper matter for shareholders to vote on, and they have tried to keep the proposal out of proxy statements prepared for their 2008 annual meetings.

Some, like General Electric and Medco Health Solutions, have explicitly adopted principles that include the goal of universal coverage. Some, like Boeing and Reynolds American, have opposed the shareholder initiatives. At least a dozen companies, like Wal-Mart and I.B.M., have negotiated with shareholders in the belief they can find common ground.

The shareholder proposal asks companies to adopt “principles for comprehensive health care reform” like those devised by the Institute of Medicine, an arm of the National Academy of Sciences.

The institute says health insurance should be universal, continuous, “affordable to individuals and families,” and “affordable and sustainable for society.”

Employers frequently complain about the cost of health benefits for employees and retirees. The shareholder proposal would not require companies to provide health benefits for employees, but asks top corporate executives to view the issue in a broader context, as a question of social policy.

“We are doing what we can as shareholders,” said the Rev. Michael H. Crosby, a 68-year-old Capuchin priest who has had discussions with nine companies on behalf of 20 Roman Catholic orders this year. “We come out of a religious tradition, but we are not engaged in a messianic enterprise. We are one voice among many seeking equitable access to health care for all.”

Religious groups and labor unions hold billions of dollars worth of stock in their pension and health benefit plans. They submitted the same basic health care proposal to three dozen large companies, and they say they have received respectful hearings at many.

“We are working for a national policy that provides universal access to health care, and we do hold more than 30,000 shares of General Electric stock,” said Barbara Kraemer, a Roman Catholic nun who is national president of the School Sisters of St. Francis. “As we pursued the proposal with G. E., the company requested a dialogue in lieu of the shareholder resolution, so we withdrew it. The dialogue was productive, resulting in G. E.’s public endorsement of the Institute of Medicine principles.”

Labor unions and religious groups said they intended to broaden the proxy campaign by bringing in more pension plans next year. If the dialogue between companies and shareholders were to continue, as expected, it could help bridge the divide that has frustrated earlier efforts to cover the uninsured.

Opposition from businesses was one of the major factors that sank President Bill Clinton’s proposal for universal coverage in 1994. But businesses of all sizes are clamoring for relief from high health costs and have concluded they cannot solve the problem by themselves.

Under the commission’s rules, a company does not have to allow shareholders to vote on a proposal if it “deals with a matter relating to the company’s ordinary business operations,” for which management is responsible.

But the commission said it was appropriate for shareholders to express their views to company management by voting on “significant social policy issues” beyond day-to-day business matters.

Over the years, the commission said, it had reversed its position on certain issues to reflect “changing societal views,” and that now appears to be the case with respect to health care.

One of the more bizarre proxy battles occurred at UnitedHealth, an insurer that covers more than 70 million people.

Dr. Reed Tuckson, an executive vice president of UnitedHealth, was a member of the panel that drafted the principles for universal coverage issued by the Institute of Medicine in 2004. But when the Oneida Tribe of Indians, which owns 800 shares of company stock, asked for a formal endorsement of the principles this year, the company resisted.

Lawyers from O’Melveny & Myers, representing UnitedHealth, told the S.E.C., “The proposal provides that ‘health care should be universal,’ dictating to whom the company should provide coverage.” Moreover, they said, by asserting that “health care coverage should be affordable,” the proposal usurps the company’s right to decide what prices to charge for its policies.

Even after the commission told UnitedHealth to include the proposal in its proxy statement on April 2, the company urged the agency to reconsider, saying, “The proposal does not relate to a ‘significant social policy issue,’ as that term has been defined” by the commission.

UnitedHealth mollified shareholders by posting a statement on its Web site that endorsed the goal of “access to health care for all Americans” and the principles of the Institute of Medicine.

“We like to work with our shareholders,” said Donald H. Nathan, senior vice president of UnitedHealth. “It was better to deal with the issue in a dialogue, rather than through the proxy process.”

Exxon Mobil reached a similar conclusion after the staff of the S.E.C. ruled in February in favor of shareholders seeking a vote on the health care proposal. The shareholders, from the Sisters of St. Francis in Minnesota, withdrew the proposal after Exxon agreed to a dialogue.

The United States Chamber of Commerce has complained bitterly about the shareholder campaign waged by the A.F.L.-C.I.O. and other organizations. In response, the Labor Department declared recently that trustees of a pension fund risk violating their fiduciary duties when they try to “further legislative, regulatory or public policy issues through the proxy process.”

Labor unions and religious groups say the proxy is justified because it advances the potential to enhance their investments.

Companies have offered various reasons for resisting the health care proposal. Boeing said it would “not benefit the company or its shareholders.”

General Motors said that “adoption of these health care principles will not advance the legislative debate or facilitate the enactment of federal legislation that would benefit the corporation, its stockholders or the country.”

Reynolds American, the cigarette maker, expressed concern that universal coverage would be financed by more tobacco taxes.

Saturday, May 24, 2008

Introducing the Kiddos

Here they are being delivered by my dear sweet neighbors last Saturday. The kittens are a brother/sister pair (two out of four) and thankfully enjoy each other's company.

The little black kitten was named Pippin by his previous family as he was the runt of the litter and the pipsqueak, but he is anything but insignificant. The name has stuck, reminding me of the Schwartz/Fosse broadway hit of the same name AND of the youngest Tolkien hobbit to journey with the Fellowship of the Ring.

The multi-colored little girl was the only female feline of the litter. She was previously called Isis, but that didn't resonate with me. So after a few days of deliberation and various thoughts of Pandora or Calliope, she is named Musette. My musical little muse.

This is one of the most common scenes around my house lately.

And after a hard day's work of stalking, pouncing, wrestling, and regular breaks for eating, Puppin and Musette pause long enough for some sleep.

Friday, May 23, 2008

Rain Pryor sings Jazz Cabaret in Baltimore for MS Benefit

Did you know that Rain Pryor, comedienne, actress, singer, author... calls Baltimore home? a mezzo-soprano who sings jazz?

...welcomed daughter Lotus Marie into the world on April 1, 2008? committed to raising awareness, support, and funds for multiple sclerosis research? performing a special one-night engagement at the Baltimore Hippodrome on June 6, 2008 at 8:00pm to benefit the Maryland Center for Multiple Sclerosis at the University of Maryland?

“Pryor Experience”

Jazz Cabaret with an eclectic collection of Jazz standards and straight ahead jazz, peppered with what Rain Pryor is known for, her own style of comedy and storytelling! As a bonus, Rain collaborates with local Blues Alley veteran, Keith Killgo, for this 'not-to-be-missed' Special Performance!

For tickets to Rain Pryor’s performance on June 6, 2008, at the Hippodrome, go to or call 1-800-551-SEAT.


Dear regular Brass and Ivory readers,

Let me tell you a little story. Earlier this week, I decided to check out the networking site "LinkedIn". In signing up, I discovered that a number of friends and contacts are already members so I proceeded to the next step in the process and requested a "connection" with those friends. One such friend learned that I have this blog (she already knew that I have MS) and I learned more about her role as the Senior Media Relations Specialist for the University of Maryland Medical Center.

So here's where you, my cyper-friends and fellow MSers, come into play. There are still tickets available to "Pryor Experience" ranging in price from $35 to $100. The proceeds go to support one of our great MS Research Centers which lies in the shadow of John Hopkins and Georgetown. Although I haven't been the recipient of their excellent patient services, maybe you have.

So what I'm asking is that you help to spread the word about Rain's "Pryor Experience" and inform your readers of an excellent opportunity to partake in a night of Cabaret and Comedy. Please feel free to use the official Press Release below or my version of the PR above.

Either way, everybody loves a caberet.

Thanks, Lisa



June 6th Hippodrome Show Will Benefit the Maryland Center for Multiple Sclerosis

Actress, comedienne, author and singer Rain Pryor is a dynamic and award-winning performer, known for roles on both stage and screen. She is also passionate about another role, as an educator and advocate for advances in fighting multiple sclerosis (MS), an illness that her father, comedian Richard Pryor, battled for nearly two decades. Now a Baltimore resident, Ms. Pryor will show her commitment to finding a cure for multiple sclerosis by presenting her one-woman show, “Pryor Experience,” at the Hippodrome theatre on June 6, 2008.

The jazz cabaret performance will benefit the Maryland Center for Multiple Sclerosis, a decades-long leader in patient care and innovative research, which is part of the University of Maryland Medical Center and the University of Maryland School of Medicine.

“Watching my father struggle with this debilitating disease had a profound effect on me,” explains Ms. Pryor. “I learned all I could about multiple sclerosis and made a commitment to do all I could to help MS patients and their families.”

She adds, “I am very excited to work with the Maryland Center for MS, having seen first hand the expertise and dedication of their team of doctors, nurses and researchers. They are committed to state-of-the-art, compassionate care for their patients and to innovative research to find better therapies to cure and prevent MS.”

“Rain Pryor is a passionate advocate for people with multiple sclerosis, and we are thrilled that she is bringing her talent, enthusiasm and energy to help our center,” says Walter Royal, III, M.D., director of the Maryland Center for Multiple Sclerosis and an associate professor of neurology at the University of Maryland School of Medicine.

“Ms. Pryor exhibits a real commitment to make a difference for people living with MS. During her visits with our patients, clinical staff and researchers, she has impressed us with her detailed knowledge of multiple sclerosis and her insightful questions about the disease and the progress of current research.”

Richard Pryor was diagnosed with MS in 1986 and died in December 2005. That same year, Ms. Pryor became a national ambassador for the National MS Society. In honor of her dad, she travels around the country speaking and performing to educate people about the disease, treatments and research.

Multiple sclerosis is a neurological disease that affects 400,000 Americans. It usually strikes young adults. Twice as many women as men have the disease. In MS, the person’s own immune cells attack the outer membrane covering, or myelin sheath, of nerves of the brain, spinal cord and optic nerves. This causes a wide range of symptoms including tingling, numbness, loss of strength, dizziness, fatigue and visual disturbances, such as double vision. The severity of MS varies greatly among individuals. While there is no cure, there are medications that can effectively suppress disease activity and can help patients manage symptoms.

The Maryland Center for Multiple Sclerosis offers patients the highest level of care through a multi-disciplinary team of specialists including physicians, nurses, therapists and social workers. Patients receive a comprehensive evaluation and have access to the latest treatment options, including opportunities to participate in clinical trials of new therapies. MS Center physicians include neurologists and neuro-ophthalmologists who specialize in treating MS patients. The MS center also offers physical, occupational and speech therapy, and assessment of swallowing problems through facilities at Kernan Hospital. Nurses also work with patients to educate them about multiple sclerosis and coordinate rehabilitative care and home health services.

The Maryland Center for MS also has a comprehensive, nationally recognized research program that tests new drugs and drug combinations and explores other areas of research, including Vitamin D and multiple sclerosis, the use of bone marrow-derived stem cells, novel rehabilitation approaches and the role of B cells and potassium channel function in MS.

In the 1990s, University of Maryland MS researchers were national leaders in testing two drugs, Betaseron and Copaxone, which are now widely prescribed in order to reduce the number of relapses and slow the progression of disability for people with MS. Currently, the center is involved in 16 clinical trials of medications for the treatment of multiple sclerosis.

Rain Pryor has been a performer her whole life and has had numerous parts in movies and television. In 2004, she created a one-woman show based on her life called “Fried Chicken and Latkes,” an award-winning production that explores issues of race and class from her perspective as a woman with an African American father and a Jewish mother.

Ms. Pryor also talks about her life in her book, “Jokes My Father Never Taught Me: Life, Love and Loss with Richard Pryor,” published in 2006. The book received nominations for an NAACP Image Award and the African American Literary Award.

For tickets to Rain Pryor’s performance on June 6, 2008, at the Hippodrome, go to or call 1-800-551-SEAT.

Thursday, May 22, 2008

Carnival of MS Bloggers #11 - Strength Edition

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

Native American Proverb: “That which was stolen from my soul has been returned. I shall follow the birds great and small.”

Brian, a newly diagnosed MSer who blogs at The Life of BMW, shares the story of the carpal tunnel syndrome that wasn't and the multiple sclerosis that is. Interestingly it was the Pain Specialist, all lined up to give Brian a steroid injection in his lower back to calm the effects of a bulging disk, who put two and two together and encouraged Brian to see a neurologist.

Me & a dumb stupid whore named MS~ (excerpt)

At the beginning of 2008 I scheduled the MRI. I decided to wait until after the holidays because I didn't want to ruin the season for me and my family. I went in for my MRI and it was frightening, but not all that bad. The very next day I called my doctor to get the results. His first words were, "It doesn't look good!" Shit something is wrong and all I can think is, “I'm going to die”. My doctor started reading the MRI report and I shouted, "Doctor, just tell me what is wrong with me!" He stated that it appears that I have MS and would need to see a neurologist. The next few moments are a blur, but I kind of lost it. I was hysterical and needed to get home. I was at work, so I had Chaz come and pick me up. I couldn't believe that this was happening. How did I get MS? My life will forever be different because now I have a disability. WHAT THE FUCK!!!

After the initial shock had worn off I decided to embrace my MS and fight it. I scheduled my appointment with one of the best MS neurologists and he officially diagnosed me with Multiple Sclerosis. Now the next step is starting the treatments. The treatments are a combination of home injections as well as steroid infusions at the MS Center. The great thing is that we found it so early and I have a good chance of controlling my episodes. The main thing about MS is that you must be positive. Multiple Sclerosis sucks, but it could be a lot worse. It's not life threatening and it's something I can manage with different treatments. When I first researched MS I noticed that I only had one of the symptoms. I was glad that I didn't have some of the other symptoms. Well, again I spoke to soon. This past Monday I woke up and I had a terrible strain in my right eye. I "assumed" that I had a nasty sinus infection. I contacted my doctor to get an antibiotic. The strain formed into blurry vision and slight blindness. This is definitely not a sinus issue!

What I have is a symptom of MS called Optic Neuritis. Optic Neuritis causes temporary blindness, blurry vision and possible pain in one eye. This will last, without treatment, anywhere between 4 to 12 weeks. It has been a week and luckily I am starting treatment on this upcoming Monday. The reason I wanted to share all of this personal information is because it helps me release some of the frustration that comes along with my MS. As I stated, when I first found out about MS I was horrified. Now, I feel so relived and lucky that it's not something worse. I consider this to be a wake up call for my health. After 13 years of smoking ciggs I quit cold turkey, 8 weeks ago. Anyone that knows me understands that this is huge for me because I love my ciggs. I feel everything happens for a reason. The bulging disc has nothing to do with my MS, but if it wasn't for the bulging disc I would not have known I had MS. I feel absolutely blessed, as corny as that sounds, because I can deal with this disease. I am fortunate enough to have an excellent family and friends that will always support me. MS is fucking scary, but it’s something I have to deal with and I am ready to knock this bitch out! HOLLA~
Shauna, a very cool 'geeky' radio jock who blogs at bugs, bikes, brains, shares a story of traumas, scars, disability, failure, and rejection. Even as a young child, Shauna could appreciate the enormous strength which comes from facing life's challenges. I hope you too can derive strength from adversity.

As a child I was horse crazy. I still kind of am, though not enough that I have horses on my walls, pillows, etc. Horses are huge, gentle, creatures, with unmatched beauty and grace. And speed. I'm not sure what always attracted me to horses, but like many young girls, I was horse crazy. I read every series of horse books out there including the Black Stallion and Fury series. I knew about colic in horses, and how it can kill them. I knew about fetlocks and feathers, gaits and geldings, withers and warmbloods. My CCM supercycle was turquoise and one speed and I named it Mustang.

I learned to ride when I was 13 on a gorgeous buckskin gelding named Nugget. I had no idea what I was doing but I learned quickly and within a couple of days was able to ride bareback. I stuck to that horse like a burr, though I hope not as annoying. He was the eldest horse at the stable and apparently the gentlest. The only fly in the ointment was his experience as a youngster with a barb-wire fence and his face. He still bore the scars of his entanglement and that endeared him to me even more. He did take off in fright on the first day. When on a trail ride we had to walk across a barb wire fence laid down in the field in preparation for installment. As soon as he saw it, he sped off with tiny little me on his back pulling on the reins as hard as I could. I was small for my age and it took everything I had to stop him. That's when they explained to me about his bad experience. Nugget had several black lines on his tan face. They were the scars from the fence and as far as I was concerned, they were streaks of beauty. They gave him a story.

One horse story I read as a kid was The Blind Colt by Glen Rounds. It's a wonderful story about the birth and first year of life of a blind colt and the boy who catches and trains it. (As an adult I went looking for the book and it took a while to track down and order.)

I also had an affinity for Beethoven as a kid. I took piano lessons for several years and my favourite composer by far was Ludwig. The fact that the man composed some of the greatest music the world has ever heard while he was deaf, impressed me to no end. I had a poster of Einstein on my wall when I was 10. What I liked about him was that he had failed a grade or two in school but still went on to become...well, you know what happened to him.

As a teenager, I was a real geeky kid. I enjoyed school and reading and in grades 8 and 9 was bullied for this. I was once mistaken for a boy at the age of 14 (I was a late bloomer) and I didn't fit in with most of the kids in school so I spent a lot of time by myself. I was different and felt it. Nugget, The Blind Colt, Beethoven and Einstein all became role models for me as I navigated the typical angst ridden teenage years. I knew that whatever hell I was going through at the time would eventually come to an end, though that was little solace then. I couldn't wait to be an adult where I'd be in the company of other adults who wouldn't treat me like an outcast. Naive, eh?

I'm not sure why I had an affinity as a kid for the underdog or those with a traumatic life experience. Being small, perhaps I saw strength in those facing "disabilities" or challenges and admired that. Perhaps the Gods were foreshadowing my own challenges.


by Diane J. Standiford

One of the most difficult things about living with multiple sclerosis is that it can steal parts of your personality. Some traits are missed by no one; some defined your very soul, such was my theft.

I loved helping those in need. As a child I formed “The Good Guys” club, consisting of my two younger cousins and me. We met in my dirty, cobweb and bat infested basement to plan what good deeds we could do that day. During snow filled Indiana winters, I loved to clean off the cars on our street. . After my great aunt lost some of her vision, my beat up Ford station wagon, was always available to take her to get her hair styled or keep doctor appointments. Surrounded by three rivers, my hometown often flooded and sandbagging in the pitch dark at the rivers edge to try and save a senior’s house filled me with great pleasure. After I moved to Seattle and MS took hold of me, my days of helping others turned into nights of questioning who I was.

One of the reasons I moved to Seattle was to see the seagulls depicting the Seattle scenery in a brochures I had requested upon turning 18 and knowing home was not in Indiana. Something about seagulls called to me. Soon after arriving I headed toward the scent of Puget Sound waters and the sound of seagulls. My first sighting was in front of the Seattle Public Library. Hearing the unique cry of the gull I looked up and there one was, in all the grandeur I imagined, and I could have sworn it was watching me too.

When I would move, it moved with me as if it were following me, welcoming me to my dream, performing just for my…plop! Suddenly my glasses were covered with a white substance I would come to know as seagull poop. Then it unceremoniously glided away.

It seems when diagnosed with a life altering disease that we humans are left with three choices: Stand still, move sideways, move forward. If we stand still, frozen by shock and disbelief, eventually we become as rigid as a tombstone--nothing but a stone where once there was a life.

If we move sideways then we immerse ourselves in our physical condition. We obsess on our losses and our what-could-have-been, or what-may-be. We spend our time searching for a cure, a reason, a logical outcome. Everyone around us seems to be moving to and fro. We become spectators at a tennis match that never ends.

The only option that made sense to me was to move forward into the unknown. Accepting that I would become a new me, embracing whoever that would be was an exciting idea. I chose to focus my moments on what I still could do. Luckily, I had help from above.

Looking out of the office building where I worked as a customer service representative for Seattle City Light, my co-workers and I noticed a seagull preparing a nest on the ledge of the building across the street. This provided several of us with a daily distraction from our stressful time on the phones handling angry customer’s complaints.

We were disturbed to see that a baby gull had somehow dropped to the ledge a story away from the nest. The mother (We presumed mother, though often there were two seagulls that hung around, daddy was very “wings on,”) was not happy.
She seemed unable to reach the baby as it had fallen to a very precarious, thin ledge six stories up. Now we had real drama. After several days it seemed mother and father gave up on the little one. We watched it shiver in the cold early morning Seattle rain. Swirling winds almost flung it to the street below. Many of my co-workers laughed at me for worrying so. It was a bird after all, it will not fall, it will fly. That made sense, but after a week of watching it all alone and not being fed…one day I looked over and it laid down, apparently too weak to stand.

How could I watch and do nothing?
“Can I borrow your sweater for a few moments?” I asked my co-worker who sat next to me, as I reached for it.
“Uh, ok.”
“Silvia, let’s go get that bird down,” I said as I swiftly walked past her desk in front of mine.

Silvia was a short, stocky, almost sixty, Greek woman; who I greatly respected and felt her to be a woman of action. She quickly removed her headset and off we went.

Sometimes, no, often, I wonder what motivates me. A flat land Indiana small town girl who hated the ride up to the Space Needle, hated Ferris wheels, hated ladders, loved my feet planted firmly on floor one, plus I happened to have multiple sclerosis; and I’ve decided that my friend and I will scale a big city sky scraper to save a baby bird? But this is all in hindsight, at the time Silvia and I never hesitated.

By elevator we made it to the height where the bird was, and I asked Silvia to wait close to the exit. “Silvia, I’ll grab the bird in the sweater, hand it off to you and you take it up...” “OK,” she replied in her heavy Greek accent. That was the only discussion we had about it. What could be simpler?

Oh sure, I had bouts of Vertigo, yeah dizziness on occasion, loss of balance, just the usual MS symptoms. As people in nearby buildings watched the two kooks up by the baby seagull, I got as close to the ledge as I could. The baby was within my arms length. It was considerably larger up close, robin size with a very sharp beak. As it saw my head poke around the corner it immediately backed away. “Diane! Be careful,” Silvia cried out as I turned and put my finger to my lips signing “sshh.”

With as much sweetness as I could muster I began, “Hi, little gull. It’s okay, don’t be scared. Come here.” The bird was scared to death and trembling uncontrollably. With the sweater hidden behind my back, bending further over the ledge, the gull started scooting slowly towards me. Just then a woman’s soft voice asked in a whisper, “What can I do to help?”

Tina, a friend of Silvia’s, had heard of our rescue attempt and ran over to assist. The baby bird was startled, as was I, and again it retreated.

“Tina, find this building’s maintenance man and tell him to bring a ladder. I’ll get the bird, hand it off to Silvia then she can give it to the man to take it up to the nest.” “Got it,” she said as she quickly turned and ran off, telling Silvia the new plan. Turning my attention back to the bird it had retreated further away now than when we first arrived. It looked exhausted as it slumped onto its side.

Think, Diane, think, I was saying under my breath, but it was hard to think because there was a strange, distant high pitched whistling sound in my ears. It grew loud enough to drown out the sound of the traffic below. As I glanced at Silvia for just a moment the look on her face was one of terror. Turning my head as if in slow motion I looked down Third Avenue, a main street in Seattle, and flying swiftly our way right down the middle of the street was a seagull. It was headed for me and the closer it came the larger it grew. It stopped two inches from my face, hovering there, its long beak as sharp as any sword I cold imagine and it stared at me.

Maybe this is a good time to tell you what happened at a small duck pond in front of an apartment complex I once lived at. The ducks had become aggressive to residents who fed them bread crumbs. After my bag of bread crumbs was eaten I would hold up my hands to the ducks and they simple turned away.

So when the parent seagull stared me down I pointed to the baby, and then made the motion of lifting it up to the nest. The huge, beautiful bird watched my movements then flew over to the baby and screeched until the baby stood and started moving towards me. The adult bird flew away straight down the street again and out of sight. Trembling more each step it took, I repeated my soft words of encouragement, cupping my hand, not reaching over too far so it might feel it had far to go before I could…swiftly with one motion I threw the sweater over the little gull and scooped him up, gently I handed it to Silvia who ran it to Tina who handed it to the maintenance man who had his ladder in place against the roof tier and up he went. Moments later he returned, the bird was back in the nest and within seconds the parent bird appeared out of no where and landed at the nest. Silvia summed it all up with, “There.” We headed back to work.

Returning to some applause, I collapsed, exhausted, into my desk chair as my co-worker who sat next to me said nonchalantly,” Where is my sweater?”

Thus began a series of bird rescues. Walking past an empty apartment in my building the shrieks of the apt. manager could be heard. She was chasing a sparrow around the room like a crazy woman. I calmly walked in, took off my jacket, and I began speaking softly to the frightened bird. It landed at my feet and I quickly covered it with my jacket; then scooped it up and released it out the window. The apt. mgr. was thrilled. “How did you learn to do that?” she asked. I shrugged my shoulders.

At these times a memory does come back to me when a bat was loose in the house my mother and I lived in. We were both frantic. A visiting friend of my brother’s asked if we had a shoe box. The bat was clinging to a curtain. He took the shoe box and using the lid flipped the bat inside.

Not long after the gull and sparrow experiences, I was sitting on a bench near Lake Washington watching a duck having a fit. Passersby were trying to chase it away. It was quacking so loudly without out taking a breath, of course it came up to me. Showing it my empty hands, no food here, ducky, it just got louder. OK, I stood and it waddled away. I followed down a steep embankment, relying greatly on my cane, along the lake’s edge, “I can’t swim you know!” (Now I was shouting logic to a duck)

Suddenly the wise-quacker stopped and looked at me with a, “Well, get to it!” look on its face. “Peep, peep, peep…” I heard, but where was it coming from? The duck was getting an attitude with me now and began circling a spot ahead. Sure enough there in a hole in the ground was a baby duckling, muddy and pitiful looking, but not so far down I couldn’t simply bend over and pick him up. Off they waddled without so much as a thank you.

Over the years birds in trouble have somehow found their way into my life. Even now that I spend most of my time in a power chair, birds serenade me and fly into my balcony. Just last week I escorted a wayward sparrow back outside from my apartment buildings hallway. I am me again.

Native American Proverb:
“That which was stolen from my soul has been returned. I shall follow the birds great and small.”

Retired in 2004 after 18 years of working for the City of Seattle, recently turning 51 and living with MS for over 20 years, I continues to seek new ways of embracing who I have become by focusing on all that I can do while moving forward past what I can not do.

And finally, Oui ?... SEPourkoi ? , the blog of a French MS patient, Missbizz, provides a forum, lively discussion, and helpful links to patient-oriented organizations. Pat shares this post with us - SCLÉROSE EN PLAQUES : LES BIENFAITS DE L'ORTHOPHONIE - and describes her blog in the following manner...
In early 2003, it took up residence in my central nervous system and has clearly found the place comfortable… Small considerations and other thoughts about this undesirable invader: multiple sclerosis (the blog of a French MS patient... in French language)
This concludes the 11th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 4, 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, June 2, 2008.

Thank you.
Comments for this post.

Tuesday, May 20, 2008

Music Heals, Body and Soul

I found this NYT article to be rather interesting. I'd like to see more research into the effects of various genres of music and typical sounds we encounter in our urban jungle and their influence on inflammatory processes, especially those at work in autoimmune diseases.

A Musician Who Performs With a Scalpel
Published: May 20, 2008

For Claudius Conrad, a 30-year-old surgeon who has played the piano seriously since he was 5, music and medicine are entwined — from the academic realm down to the level of the fine-fingered dexterity required at the piano bench and the operating table.

IN TUNE Dr. Conrad, a pianist and surgeon, says that he works better when he listens to music and that music is helpful to patients.

“If I don’t play for a couple of days,” said Dr. Conrad, a third-year surgical resident at Harvard Medical School who also holds doctorates in stem cell biology and music philosophy, “I cannot feel things as well in surgery. My hands are not as tender with the tissue. They are not as sensitive to the feedback that the tissue gives you.”

Like many surgeons, Dr. Conrad says he works better when he listens to music. And he cites studies, including some of his own, showing that music is helpful to patients as well — bringing relaxation and reducing blood pressure, heart rate, stress hormones, pain and the need for pain medication.

But to the extent that music heals, how does it heal? The physiological pathways responsible have remained obscure, and the search for an underlying mechanism has moved slowly.

Now Dr. Conrad is trying to change that. He recently published a provocative paper suggesting that music may exert healing and sedative effects partly through a paradoxical stimulation of a growth hormone generally associated with stress rather than healing.

This jump in growth hormone, said Dr. John Morley, an endocrinologist at St. Louis University Medical Center who was not involved with the study, “is not what you’d expect, and it’s not precisely clear what it means.”

But he said it raised “some wonderful new possibilities about the physiology of healing,” and added: “And of course it has a nice sort of metaphorical ring. We used to talk about the neuroendocrine system being a sort of neuronal orchestra conductor directing the immune system. Here we have music stimulating this conductor to get the healing process started.”

Born in Munich, Dr. Conrad took up the piano when he was 5 and trained in elite music schools in Munich, Augsburg and Salzburg, Austria. After high school he served his obligatory military service as a sniper in the German Army’s mountain corps, where his commander found every opportunity to fly him out of the Alps for some piano time.

After his service he decided to pursue medicine while continuing to study music. He earned a bachelor’s degree at the University of Munich and then, more or less simultaneously, two doctorates and a medical degree.

Dr. Conrad’s music dissertation examined why and how Mozart’s music seemed to ease the pain of intensive-care patients. He concentrated not on physiological mechanisms but on mechanisms within Mozart’s music.

“It is still a controversial idea,” he said recently, “whether Mozart has more of this sort of effect than other composers. But as a musician I wanted to look at how it might.”

Dr. Conrad noted that Mozart used distinctive phrases that are fairly short, often only four or even two measures long, and then repeated these phrases to build larger sections. Yet he changed these figures often in ways the listener may not notice — a change in left-hand arpeggios or chord structures, for instance, that slips by unremarked while the ear attends the right hand’s melody, which itself may be slightly embellished.

These intricate variations are absorbed as part of a melodic accessibility so well organized that even a sonata for two pianos never feels crowded in the ear, even when it grows dense on the page. The melody lulls and delights while the underlying complexity stimulates.

But even if this explains the music’s power to stimulate and relax, “an obvious question that comes up,” Dr. Conrad said, “is why Mozart would write music that is so soothing.”

Mozart’s letters and biographies, Dr. Conrad said, portray a man almost constantly sick, constantly fending off one infection or ailment after another.

“Whether he did it intentionally or not,” Dr. Conrad said, “I think he composed music the way he did partly because it made him feel better.”

Recently, Dr. Conrad has focused on specific mechanisms that may help explain music’s effects on the body.

In a paper published last December in the journal Critical Care Medicine, he and colleagues revealed an unexpected element in distressed patients’ physiological response to music: a jump in pituitary growth hormone, which is known to be crucial in healing. “It’s a sort of quickening,” he said, “that produces a calming effect.” Accelerando produces tranquillo.

The study itself was fairly simple. The researchers fitted 10 postsurgical intensive-care patients with headphones, and in the hour just after the patients’ sedation was lifted, 5 were treated to gentle Mozart piano music while 5 heard nothing.

The patients listening to music showed several responses that Dr. Conrad expected, based on other studies: reduced blood pressure and heart rate, less need for pain medication and a 20 percent drop in two important stress hormones, epinephrine and interleukin-6, or IL-6. Amid these expected responses was the study’s new finding: a 50 percent jump in pituitary growth hormone.

No one conducting these studies had yet measured growth hormone, whose work includes driving growth, responding to threats to the immune system and promoting healing. Dr. Conrad included it because research over the last five years has shown that growth hormone generally rises with stress and falls with relaxation.

“This means you would expect G.H., like epinephrine and IL-6, to go down in this case,” Dr. Morley, of St. Louis University, said of growth hormone. “Yet here it goes up.”

He added, “The question is whether the jump in growth hormone actually drives the sedative effect or is part of something else going on.”

Dr. Conrad argues that the growth hormone does have a sedative effect. In his paper he cites a 2005 study showing that growth hormone releasing factor, a chemical messenger that essentially calls growth hormone to duty, reduced activity of interleukin-6. This suggests, he said, that growth hormone itself may reduce the interleukin-6 and epinephrine levels that produce inflammation that in turn causes pain and raises blood pressure and the heart rate.

This explanation gets a mixed reception among stress researchers. “The two dynamics aren’t necessarily the same,” said Dr. Keith W. Kelley, an endocrinologist at the University of Illinois at Urbana-Champaign and an expert on inflammatory responses. “I personally don’t buy the particular cellular mechanism he’s proposing.”

Yet Dr. Kelley and other stress-response experts, including Dr. Morley and Dr. Bruce S. McEwen of Rockefeller University in New York, say Dr. Conrad’s study clearly suggests that a rise in growth hormone may somehow dampen inflammation and stress responses.

“This is a really intriguing possibility that bears a closer look,” Dr. McEwen said.

For Dr. Conrad, the finding offers a sort of scientifico-musical elegance: Here, it seems, may be a hormonal parallel to music’s power to simultaneously rouse and soothe.

He hopes to expand his study of music’s effects on growth hormone in intensive-care patients. He is also planning roughly similar studies of how music affects a surgeon’s performance. That line of study goes way back — at least to 1914, when The Journal of the American Medical Association published “The Phonograph in the Operating Room,” by E. Kane.

More recent studies have shown that surgeons perform math calculations faster and more accurately when they listen to music they like. Dr. Conrad hopes to find neurophysiological dynamics related to this performance enhancer.

In short, he will continue to carry his study of music into the operating room — along with his music itself.

“When I was a resident, you just picked a radio station,” said Dr. Randall Gaz, an attending surgeon at Massachusetts General Hospital who is one of Dr. Conrad’s teachers in the operating room, and an amateur pianist, oboist and church organist as well.

“This new wave of surgeons bring their iPods,” he continued. “They bring whole mixes. It’s like they have the whole thing choreographed.”

When Dr. Conrad operates, he brings an iPod stocked not just with Mozart, Liszt and Scarlatti but also with gigabytes of European techno-rap bands his colleagues have never heard of (and cannot understand), including Klee, M.C. Solaar and Armin van Buuren.

Asked if he could actually work with that kind of music, he replied, slightly sheepishly: “Well, that’s not the music you want when you’re in the middle of a delicate procedure. But once you’re through that part and you’re closing up” — he shrugged — “it’s a good time to liven things up.”

Occasionally, his operating room colleagues do give him grief. Then, he said with a grin, “I remind them that there is only one person in the room with a doctorate in music philosophy, so if you don’t like the music, the expertise is on my side.”

Sunday, May 18, 2008

Carnival Submissions Due!!

Just a reminder that submissions for this week's Carnival of MS Bloggers are due Tuesday morning, May 20, 2008!! You may submit a recent post from your blog via blogcarnival or email.

I look forward to seeing what great stuff you wish to share. Thank you.

Saturday, May 17, 2008

"Dark Night of the Soul but Sunshine on the Other Side"

I want to introduce you to a newly-discovered MS Blogger, Nadja, who writes with a clear honest voice. I took the time to read all 22 of her posts and I'm glad I did. Here is an example from her blog Living! with MS.

Journal 5/07/08- Dark Night of the Soul but Sunshine on the Other Side
On Monday night/early Tuesday I let myself go further into my fear than almost ever before… What started as an experiment fared very poorly on that darkest night of my soul.

It all started as an experiment. I had been battling terrible insomnia and I finally caved and asked my doctor for a sleep aide. I took the pill with visions dancing in my head of a long, much-needed, blissful sleep. When it started to kick in, I began to have my doubts. My vision blurred and suddenly my world was sweeping sidewise again.

When I got into bed with Matt, I was filled with dread. My bed just felt wrong. Images of myself hurling vomit into a plastic salad bowl on the right side of my bed haunted me. I gripped Matt’s hand tightly and tried to breathe but I was drowning with fear. I cried and talked, trying to release my anxiety. Matt listened and spoke soothingly. He suggested dropping a leg to the floor for the “drunk’s balance.” I tried but still I was full of fear and vertigo. I couldn’t decide if it was real or imagined, so fierce was my anxiety. I found myself fighting the drowsy downward pull of the sleep aide. Every time I closed my eyes I seemed to sink into the whirling, dark mass of my bed. Eventually the pill took me but only for about four hours of haunted, nauseated sleep.

I awoke at about 4:00 a.m., anxious and ill. I waited until Matt woke up and then begged to be held but I could not get away from my fears and illness. I finally asked for a cold compress and a vomit bucket.I didn’t puke. Thank goodness for that since I am also still haunted by retching up blood a few weeks ago. Matt brought me food in bed and I eventually ate and got my meds down. I psyched myself into bathing. It helped a little and I finally made it away from the fear of my dreaded bed.

Unfortunately, I spent my entire day glued to the couch fighting headaches and nausea. Matt’s family had a crisis and I felt terrible that I couldn’t be there for them and him but all I could do was try to fight the anxiety and illness. By the end of the day I was a wreck. I cried for at least a quarter of the time Matt was gone. By 4:00 I was really freaking out and then my friend came by. Slowly the last effects of the sleep aide wore off along with my nausea. Matt brought groceries and made dinner. He also brought me a holistic remedy for anxiety called Bach’s Rescue Remedy. It really did the trick.

When I put the tincture under my tongue the anxiety immediately released. Eventually I could put my head down and lay flat on my stomach. Matt rubbed my back and I relaxed. Then, he took me to bed at 8:30 p,m. and changed the comforter and pillow to help alleviate my negative associations with our bed recently. I feel into a deep, peaceful slumber for about 3 hours. I awoke without anxiety, spent some time with Matt, rested and finally got up at 2:00 a.m.Now I feel free from anxiety and almost ready to go to sleep a little again. Better yet, the sun will shine tomorrow. I realized again tonight that my life is truly mine to shape as I will. There will be dark, dark notes but there will also be splendid sunrises.

Thursday, May 15, 2008

I'm Expecting...

NO, I'm not with child.

This Saturday I will be delivered two kittens, a brother/sister pair, from one of my gentle piano students. The little girl kitten is a striped calico with intense color and a mostly-tan face. The little boy kitten was the runt of the litter and is solid dark gray (almost black) with the brightest blue eyes.

I've been trying to think of names but so far nothing is coming to mind. I may just give it some time and let their personalities speak to me.

It has been almost 20 years since I've cared for kittens, much less trained them in proper kitty behavior. This is going to be an exciting new journey.

If you have any suggestions on names, please leave a comment below.

Wednesday, May 14, 2008

"Here Comes the Pitch!!"

Regular visitors to my little ol' blog here may have noticed a series of posts in which were listed a wide variety of health-related blogs. Before you think I've gone mad and conducted endless research into collecting all these sources, think again.

The Bulldog Reporter, according to SourceWatch, "is a publication that helps 'PR professionals increase media coverage through smarter pitching.' It is published by the Infocom Group, which pays journalists to make presentations before PR professionals, providing inside advise on how to better pitch and place stories and to cultivate relationships between PR professionals and journalists."

The Bulldog Reporter's Inside Health Media acknowledges that social media (aka blogs) has risen as an influential media source to consumers of health services and products. "Inside Health Media’s huge new blog directory gives PR pros an inside guide to influential bloggers covering health, medicine and fitness."

Of course when I first learned about this massive list, I was curious to see who was on it. Imagine how tickled I was to find that Brass and Ivory and the Carnival of MS Bloggers were listed. Which led me to think - other health bloggers might be interested to know if they too were on 'the list.

Keep in mind that Inside Health Media is hoping to provide a resource useful for PR pitches. But this isn't going to help much if the PR folks don't actually spend a little time getting to know on what subjects each blogger writes.

Yesterday, I received a pleasant-enough PR pitch to write about HPV testing.

Hi Lisa--

It's National Women's Health Week and I've been trying to spread the word about HPV and its link to cervical cancer. I wanted to give you a heads up about the HPV Test in case you'd be interested in writing a post about it.

The pap alone is not foolproof in detecting HPV-- it can miss up to half of the time! But when combined with the pap, the HPV Test is virtually 100% accurate in identifying women at risk for cervical cancer.

There are some good patient testimonial videos at

And more information about the test at

Feel free to contact me if you have any questions!

Now I believe that this person come to me by googling "women's health." And seeing as I've never written specifically about "women's health" it is evident that the only reason I came up on her search was due to the category of "women's health" on the IHM Blog list. But that didn't stop her from pitching the idea to me.

I'm not completely opposed to such things - it's just that there are other bloggers who might be more equipped to speak on this matter. A couple come to might immediately including Diane of A Stellarlife.

So here I am posting the message about including the links. But I'm also going to post some relevant articles related to this. Here goes:

From April 2008:
From October 2007:

From 2003:
From 1999:
From CDC:

Friday, May 9, 2008

Carnival of MS Bloggers #10

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

Presented this week is a 'Top 10' list of absolutely the most necessary tools and armor any MSer must have on this journey called Multiple Sclerosis. Please do click on each post title to read the full text.
#10 - Doctors who Care

The Waterworks Saga, cont'd
My Urology appointment yesterday was brief and to the point. The first question the Dr asked me was how old was I and he commented how much ink there was on the paper; pointing out the obvious, that I have been through quite a bit for my age. Yes I have. Unfortunately. He asked me many questions about my bladder symptoms. After I answered all of his questions he explained that there is definitely something neurological going on. He went even further, explaining that with all of my spine problems, MS and Autonomic Dysfunction, Lupus, why wouldn’t my bladder be affected?

#9 - Personal Advocacy

'Tis or 'Taint?
I told him about falling down the stairs last month and my leg buckling at least once/wk leaving me catching myself or on the floor. He says "may be seizures or black-outs". What should I do for follow-up/safety? "Less stress". Hmm, I'm right on that, Doc.

Bladder problems: "You have four children, of course you will have bladder problems". Well what about the 5 years after last child/before bladder problems began?? I was once the queen of the Kegels before I became the queen of the numbum last fall. He said "you need to see a urologist/gyne and they will test you and teach you exercises. But I don't know any good ones to refer you to, so ask your primary doctor.

#8 - Financial Independence

Kiss My What?
Due to recent events I have been looking into new housing for myself and Princess. I don't spend too much time worrying about whether people would want me or not, but whether I want to rent from them or not. I know I am a good tenant, I am clean, quiet and pay my bills on time. So it came as a big surprise when a recent possible landlord was very concerned about the fact that I am disabled and didn't have any recent references. I have been married for 6.5 years and with my husband for over 8 years -- I haven't exactly been renting anything in that time. She was too concerned by my not working, even though I am able to pay the deposit, first month's rent and even a few months in advance if need be. [...]
But did this matter to said bitchy-possible-landlady? Heck no. She went on and on about having to talk to her attorney about what they would have to do to rent to a disabled person and what modifications would have to be made.

#7 - Gratitude

Rebif in Britain
I found out that I have to pay a charge for it too - the basic price of a prescription, £7.10 [ed. = $13.85, that's less than $5.00 per month] for each delivery (every 3 months). A small price really when you consider that a the starter kit alone of 4 weeks supply comes in at £586.19.

Which brings me on to another topic. Browse through the history of this blog and you'll find a few rants here and there about the fact that not all of the UK has to pay the prescription charge. They are currently free in Wales and are on the road to becoming free in Scotland over the next few years. At face value, it seems we folks in England are getting a bit of a shafting as there are no such plans on the table here.

Turns out there is a hidden side to this. Disease Modifying therapy is nigh on impossible to get for those living in Wales. Had I still been living there, sure I'd have gotten my monthly pill prescriptions free, but I would have been almost certain to not get offered Rebif as a treatment. The reason? The funds just aren't available.
#6 - Patience


I wish they would just make it easier for me--mostly I wish I didn't have to deal with all this, there are enough other things going on . . . but that's beside the point.

So I called Betaplus--to check on my application for patient assistance. They told me I qualified just today so tomorrow I can call their pharmacy and get a 90 day supply delivered. When she told me the price I said my insurance was actually $5 cheaper so I'd go with my insurance.

So, I called my insurance--after lots of automated button pushing--I talked with someone who told me that I could only order a 30 day supply and it was going to cost $60. Now Betaplus was cheaper.
[ed. WOW, even with insurance coverage, Kelly could get her DMD more cheaply through the assistance program] It turns out I was going by a quote given to me at the beginning of the year when we were officially under our new PPO insurance but because of Xavier's outsourcing of their health care plans the switchover hadn't reached Anthem so I was being quoted prices for the HMO which we had in 2007. Craziness.
I didn't actually lose money or anything but just all the phone calls makes me insane--So now I need to call tomorrow and hopefully can still get the betaseron through the patient assistance program.
#5 - Persistance in a Broken System

What Health Care Problem? It's a Great System
And the saga continues. Month #3 on my new insurance and still trying to get my MS medications without completely loosing my grip.

I waited two hours, giving them time to finish their task, and called the pharmacy. Voice mail. Wait… wait… wait. Finally, a human being. We went through the process, playing twenty questions, and then I inquired as to the charges. Uh oh. $280 over.
[ed. Mandy's monthly copay is already $500] The pharmacy claimed that they have not gotten a phone call from my insurance company since last month’s fiasco. Great.

So, back on the phone to the insurance company. Voice mail system. Wait… wait… wait. I asked for the customer service rep who called me earlier and ended up in yet another voice mail system. I called back and asked for the rep I spoke to last month and, naturally, got voice mail.

Now into Friday evening, I guess I will face the hassle on Monday. Deep breaths, and I shall try not to loose my grip.

Oh, what a pleasure it would be to inform the insurance company that they do not meet my standards and I will bring my business elsewhere! Oh, yeah. I can’t. This is the only insurance company in my state that will give me any coverage at all… and only because it is required to by state law.

Equally wonderful would be the opportunity to choose another pharmacy, one whose representatives treat me with dignity and must court my business. But, again, this is the one and only pharmacy I am allowed to deal with.

It’s a great system we’ve got here.
#4 - Flexibility and Acceptance

Sometimes 'Going with the Flow' is Not Easy
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 spasticity... how very nice that was. Improvement continued during the 10-day steroid 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.

#3 - Good Friends to Feel your Pain

Prone to Accidents - Destined to Complain
Often times when friends tell me about their pains (both physical and psychological) I am apt to want to help them in some way...offer any medical/nursing advice I think might provide relief...but mainly LISTEN to their experience. I feel badly for them and I also feel NO NEED to try to "one up" them with some sort of a "well you think THAT is bad, I have **blank**". I genuinely feel badly they are in discomfort.

But when my "acquaintance" begins to lament about a new pain? Well...frankly, I want to scream at "them". I have visions of throwing "them" down a flight of stairs just so I can be certain any new pain "they" feel a need to tell me about will be real! I loathe listening to "them" tell about their latest pain. I feel angry. I feel entitled. I want to yell, "I have MS, dayumit! You have no excuse for your alleged pain!" I want to justify my pain by providing a description to "them" just how bad pain really is...and so on. I have a visceral response to my "acquaintance" and "their" constant pain complaints.

#2 - Laughter in the Face of Adversity

Already a Year in This Flat!
Because the agency we were with cut their care down to one 10 minute visit per day we went to another agency and it all went from bad to worse.These people were mostly crap, two were at least nice and with one I did feel safe and we did have a laugh.

Laughing is important but so is good care and attention to details and this is especially important when you are looking after someone who has become so handicapped.

#1 - Joy in the Adventure

Speed Racer on Broadway with Multiple Sclerosis
Go, Scooty, go! I gunned him and rammed the cone, hoping it was not covering a deep hole or unseen drop. The flying orange cone flipped backwards into the street and as we sped off the smooshing sound of Goodyear meets orange cone bad year echoed down the steep Seattle sidewalk.

Things were looking up, or, actually down, from there---clear sailing. As we passed the multitudes of cars idling, spewing noxious fumes and angry honking, the feeling of superiority was overwhelming. Now we were in a section of Seattle known as “Pill Hill,” named for the abundance of hospitals in the area. Zip, zip, zip, very smooth cut-outs aplenty. The other side of the street, looked rough, so we kept our eyes (yes, I said it) open for the best place to cross over. That best place never came. We arrived at the main drag toward home: Broadway.

And now, a bonus 10% more for our Top 10 List.

Visit Chris who has written a book about MS and relationships.
Hi everyone. Within the book "Life Interrupted, It's Not All about Me" I share with readers all the details, including the not so pretty details of my life with MS before, during and after my first marriage. I literally made my life an open book so that others with MS, disability virtually any chronic illness could learn from my mistakes, learn from them and become familiar with the many coping skills about which I speak.

This concludes the 10th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 22, 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 20, 2008.

Thank you.

Comments for this post.

Thursday, May 8, 2008

The Patient

Wolters Kluwer Health has launched a new journal titled The Patient which focuses on Patient-Centered Outcomes Research.

Note the description below of who should read The Patient, according to Wolters Kluwer Health.

I find this rather interesting since I AM THE PATIENT and oftentimes the Healthcare Payor. But it appears that this material is geared towards everybody BUT the patient.

The benchmark journal for peer-reviewed authoritative and practical articles on the application of pharmacoeconomics and quality-of-life assessment to optimum drug therapy and health outcomes.

An invaluable source of applied pharmacoeconomic original research and educational material for the healthcare decision maker. The journal is dedicated to the clear communication of complex pharmacoeconomic issues related to patient care and drug utilization.

Every issue takes into account the needs of key groups in this discipline, making it essential reading for:

  • Formulary managers
  • Healthcare providers and institutions
  • Healthcare policy & decision makers
  • Executives in managed care and health maintenance organizations
  • Employers and other healthcare payors
  • Executives in pharmaceutical companies and
  • Pharmacoeconomic academics
Admittedly, I am emotionally torn when it comes to socioeconomic and pharmacoeconomic discussions. If I weren't painfully aware that pharma companies often price and position their drugs based on life-saving and quality-of-life implications, I would be cheering pharmacoeconomic research which can lead to the availability of MS drugs in Britain through NHS.