Tuesday, September 30, 2008

Paging Dr. Google, or, Consulting with the Homies

The New York Times ran an article (September 30, 2008) discussing the trend on going online for health information.  If you are a regular reader of this blog, and especially if you're one of my MS Blogger "homies," then you are one of those folks being discussed.

Mentioned within the article is DiabetesMine.com which is run by Amy Tenderich (man, that girl gets a lot of press coverage) in a blog setting.  Amy's got a thriving community at her site which is kinda cool.  We've got a thriving community which is spread over many, many sites.

So read and enjoy. 
When Terri Nelson learned she had a large fibroid tumor in her uterus, she went online.

There is nothing new in that, of course. The intrepid and the adept were going to the Web for health information as long ago as the 1980s, well before Google and other search engines made it accessible to a wider audience.

These days, that is pretty much everyone. At least three-quarters of all Internet users look for health information online, according to the Pew Internet and American Life Project; of those with a high-speed connection, 1 in 9 do health research on a typical day. And 75 percent of online patients with a chronic problem told the researchers that “their last health search affected a decision about how to treat an illness or condition,” according to a Pew Report released last month, “The Engaged E-Patient Population.”

Reliance on the Internet is so prevalent, said the report’s author, Susannah Fox, the associate director at Pew, that “Google is the de facto second opinion” for patients seeking further information after a diagnosis.

But paging Dr. Google can lead patients to miss a rich lode of online resources that may not yield to a simple search. Sometimes just adding a word makes all the difference. Searching for the name of a certain cancer will bring up the Wikipedia entry and several information sites from major hospitals, drug companies and other providers. Add the word “community” to that search, Ms. Fox said, and “it’s like falling into an alternate universe,” filled with sites that connect patients.

As a result, said Dr. Ted Eytan, medical director for delivery systems operations improvement at the Permanente Federation, “patients aren’t learning from Web sites — they’re learning from each other.” The shift is nothing less than “the democratization of health care,” he went on, adding, “Now you can become a national expert in your bedroom.”

These expanded capabilities allow people to share information easily, upending the top-down path of information between doctors and patients. Today, said Clay Shirky, an expert in the evolving online world, patients are “full-fledged actors in the system.”

And they have plenty of company. Benjamin Heywood, the president of PatientsLikeMe.com, a site that allows patients to track and document their conditions and compare notes with other patients, says that with a growing online population, it becomes possible to research highly specific conditions — say, being a 50-year-old with multiple sclerosis who has leg spasms and is taking a certain combination of drugs.

“We are really about measuring value in the real world,” he said.

There are so many sites today and the landscape is changing so rapidly that it would take an encyclopedia rather than a newspaper to list them. But they can be grouped into five broad, often overlapping, categories:

GENERAL INTEREST Sites like WebMD (webmd.com), Discovery Health (health.discovery.com) and The New York Times (nytimes.com/health) provide information about disease, news and lifestyle advice, as do medical institutions like the Mayo Clinic (mayoclinic.com).

MEDICAL RESEARCH SITES offer access to the published work of scientists, studies and a window into continuing research. Examples include PubMed (ncbi.nlm.nih.gov/pubmed) from the National Library of Medicine; clinicaltrials.gov, which tracks federally financed studies; psycinfo (apa.org/psycinfo), with its trove of psychological literature; and the National Center for Complementary and Alternative Medicine (nccam.nih.gov), the government’s registry on alternative medicine research.

PATIENT SITES for groups and individuals are booming — so much so that they are increasingly used by researchers to find patients for studies. These include the Association of Cancer Online Resources (acor.org) and e-patients (e-patients.net), as well as Patients Like Me and Trusera (trusera.com), which provide a bit of Facebook-style social connectivity for patients, along with the ability to share their stories in clinical, data-laden detail.

DISEASE-SPECIFIC SITES focus on a particular condition and are often sponsored by major organizations like the American Heart Association (americanheart.org), the American Cancer Society (cancer.org) and the American Diabetes Association (diabetes.org). But smaller groups can put together extensive resources as well, with sites like breastcancer.org and Diabetes Mine (diabetesmine.com), which calls itself the “all things diabetes blog.”

WEB TOOLS These sites help people manage their conditions — for example, sugarstats.com for diabetes, Destination Rx (drx.com) for comparing drug prices, and YourDiseaseRisk.com, a service of the Washington University school of medicine that helps patients determine their risk for various problems.

All of the changes in the Internet and the ways people use it help explain why Terri Nelson’s experience in 2008 is very different from what it might have been in 1998.

Ms. Nelson, who lives in Portland, Ore., received her diagnosis on Aug. 11. She had two weeks before a follow-up visit with her surgeon. Ms. Nelson and her husband, Stewart Loving-Gibbard, used the time to research fibroids and the most common treatments.

Ms. Nelson started with straightforward information gathering, checking the articles on fibroid tumors at sites that included the Mayo Clinic and PubMed. Then she reached out to the community of people with fibroid tumors at ACOR and other sites. (“Those had to be evaluated carefully,” she said, “to find the nuggets of valid information in the vast sea of online hypochondria.”)

Having spent many years trolling boisterous online forums, however, she had developed that essential Internet tool: what might be called a personal baby/bathwater algorithm that helps people to sift through mountains of information to find what is relevant. She found a blog for the layperson, “Inquisitive Geek With Fibroid Tumors,” that featured wide-ranging discussions and, she said, “was really useful” and specific to her condition.

By the time she went into the consultation with her surgeon, she knew that the old-school way of dealing with her grapefruit-size tumor would probably have been a hysterectomy. But that can impair sexual response, among other side effects; a growing number of doctors prefer abdominal myomectomy, which leaves the uterus intact. The surgeon laid out the options and recommended that approach as well, confirming Ms. Nelson’s research.

During the surgery and recovery, Mr. Loving-Gibbard used Twitter, the short-message communication service, to keep friends and family apprised of her condition. Twittering an operation might seem frivolous, but when Ms. Nelson’s teeth began chattering after the procedure, a friend following the updates suggested it could be a potentially hazardous side effect, tardive dyskinesia, that can occur with one of the antinausea drugs Ms. Nelson was taking. Mr. Loving-Gibbard, who had been researching that very point when the message from the friend, Ken Yee, came in, was able to get the medication changed.

After the procedure, they posted photographs of the surgery and tumor on the photo-sharing site Flickr.com under the heading “Extracting a Pound of Flesh” (flickr.com/photos/littlecrumb/sets/72157607218121711/). They are not for the squeamish, but as Ms. Nelson said, “My husband’s family is mostly doctors, so they were all interested in seeing the photos, and most of my friends are morbidly fascinated.”

As patients go online to share information and discuss their care, they are becoming something more: consumers. Amy Tenderich, the creator of Diabetes Mine has turned her site into a community for diabetes patients and an information clearinghouse for treatments and gadgets — even going so far as to publish an open letter last year to Steven Jobs, the Apple Computer co-founder, challenging him to design medical devices like insulin pumps that are as sleek and easy to use as an iPod.

Dr. Talmadge E. King Jr., chairman of the department of medicine at the University of California, San Francisco, says doctors are coming around to seeing the value of a patient who has gone online for information.

Patients in his pulmonary practice, he said, sometimes come into his office holding medical journal articles he has written “and quiz me.” The better-educated patient might stump the doctor, he went on, but these days “it’s much easier for me to look them straight in the eye and say, ‘I don’t know’ ” and promise to get back to them. “Patients know you’re not all-knowing,” he said. “They’re not upset by that.”

Can online information be trusted? The answer, increasingly, is yes. In a study earlier this year, a report in the journal Cancer looked at 343 Web pages about breast cancer that came up in online searches. The researchers found 41 inaccurate statements on 18 sites — an error rate of 5.2 percent. Sites promoting alternative medicine were 15 times as likely to offer false or misleading health information as those sites that promoted conventional medicine, the study found.

Matthew Holt, who with Indu Subaiya created a conference, Health 2.0, that showcases innovation, says the marketplace in information can correct itself over time.

“In the end,” he said, “the more people you have in the conversation, the better information drives out the worse information.”

Copyright 2008 The New York Times Company

Monday, September 29, 2008

It's an epidemic - MS Bloggers everywhere

Ok, peoples. No more MS please!!

There's a few more MS Bloggers who I'd like you to meet.

Diagnosed two years ago and blogging for two months - meet ME from Pearland, Texas whose blog is titled simply MS. She weathered hurricane Ike not long ago and has an interesting tale to tell.

Next meet Kimberly who was also diagnosed in 2006. Her blog is My Journey with MS. I've 'seen' Kimberly over at BrainCheese's and Blindbeard's blogs so you might already be acquainted. Kimberly traveled to Texas to consult with a pain specialist who has developed a unique device. It will be interesting to see how this device helps Kimberly.

Then there's pUNKrOCKfairy down in Florida who blogs at No Empire No More. Unfortunately, she was ALSO diagnosed in 2006 after months of symptoms and tells her MS story here.

Coming from Philadelphia is the father of twins, Bald Ben asks "Did you know that Montel Williams has that?" Bald Ben just completed five days of IVIG, just think of the liquid gold which is flowing through his veins. Oh and Ben just started blogging his MS in August as those above have done.

What is it with August? Hmmm....

Then I found Kim who blogs at Grant Moments. Her blog is not even a month old. Kim is blessed with both Multiple Sclerosis and Fibromyalgia. Here's a post where she talks about both.

And finally, Lanette who blogs at Chain Reaction. Lanette is about to get married in Jamaica. How cool is that? Oh, and she started her blog in August, too.

Anyways.... we may not welcome having MS, but we certainly (yes, I'm speaking for anybody reading this) welcome these lovely folks to the world of MS Blogging.

[Sidenote: be sure to submit your Carnival posts by next Tuesday. plzkthx]

Sunday, September 28, 2008

Economic Reflection in a Time of Less

The New York Times today (September 28, 2008) had an interesting article based on six vignettes taken from the lives of new yorkers. Each one touches on the impact of less money flow in their lives. I relate to each of them in a different way (and only highlight three of the six below), but can you determine which of these creates intense mixed feelings for me?

New Yorkers Reflect in a Time of Less

A small-business owner in Brooklyn worries about making the payroll. A homeowner in Queens faces foreclosure. A suburban stay-at-home mother cuts back on luxuries. A retiree watches rent, food and cable bills rise while her income stays flat. An aspiring musician chooses between recording fees and a trip to see his family at Christmas. A head of a nonprofit group sees grants disappear.

Six New Yorkers anxiously watch the Wall Street roller coaster and wonder how it will affect them.

Making Drinks and Song, But Not Enough of Either

Rescalla Cury, 22, an aspiring musician, lives in Williamsburg, Brooklyn, and tends bar at a restaurant in Chelsea:

I came to study music. I am taking private lessons, which made things a little bit harder. I also wanted to take a sound engineering course, but since I’m a foreigner, I would have had to pay the whole course up front, like $15,000. I play solo. I sing and play the guitar. My music is like Brazilian jazz with rock and blues. Hopefully I’m not going to be a bartender for the rest of my life.

What I can see from last year to this year is that the season is definitely slower. I’m making less money because less people are going out. And when they go out, they spend less than what they used to. I’ve been doing the same, I’ve been having friends together in my house, to drink bottles of wine, instead of going out to bars. It’s kind of like a chain. I make less money, and I stop going out too.

The rent is so absurd, and everything is so expensive. How can people afford $2,200 for an apartment? I want to stay in the apartment I’m in; hopefully my building won’t get sold.

I was planning to start recording a track by the end of the year, but I don’t know if it’s going to happen or not. Because I may have to choose between recording a track and going home for Christmas with my family.

Income Is Unchanged, Costs and Worries Rise

Betty Jones, 79, a retired social work administrator, lives in Stuyvesant Town, in Manhattan:

I live on a fixed income to the extent that I get Social Security and then I get a small federal pension from my husband, who died in 1999. Then I get a monthly check from my retirement plan.

Those three checks add up to about $5,000 a month — about $2,000 a month short for covering my expenses. My basic yearly expenses are $60,000 to $65,000 but other things come up. I fortunately have some other savings my husband and I put aside, and that’s how I make up the difference.

Rent has gone up. The cost of food is up. I have RCN for cable and phone and that’s gone up. So I really have to budget more carefully now.

I just came back from Rwanda. It cost about $5,000, for 10 days. I went with People to People, to volunteer in orphanages and vocational training programs for young people. I came back wondering what’s happening to my money. It was right in the middle of the week when the market crisis was happening. I was worrying, “What about my money-market at Citibank?” I get my statements and I’m getting poorer and poorer. I’ve lost about $40,000 or $50,000 in the past few months.

The money has to last a long time. I expect to keep ticking.

I’m not nearly as frightened as some of my friends. But I won’t spend $5,000 for another trip right away. Having been a part of the Depression as a child, I worry about what happens on Wall Street. I wonder, “My God, are we going to live through that again? Is everything going to collapse around me?”

I haven’t taken any of my money out of the market yet. Where do I put it, under the mattress?

Restoring Hot Lunches, At the Expense of Jobs

Stanley Richards, 47, is chief operating officer of the Fortune Society, a nonprofit organization in Long Island City, Queens, which helps former convicts find jobs and housing:

Our budget is about $14 million. Ninety percent of our contributions come from government funding and the rest is mostly foundations. We’re already feeling the pinch. We’ve talked about the worst-case scenario and what programs we absolutely can’t cut. The cuts will come down on the drug treatment side, on the housing side, for the next few years.

This year for the first time, the city gave us a 50 percent cut in a contract that had started in January. It was already August — the year was more than half over — so we had to end the program immediately and go through a series of steps to recoup the money we’d already spent past July 1.

Also, we had a discharge-planning program — for prisoners who are going to be released soon. The Department of Corrections stopped funding it, so we’ve canceled that.

We’re looking at a minimum of a 5 percent cut from the city. State contracts will be cut worse. We expect notification any day now. A funder at the city Department of Health and Mental Hygiene told us to be prepared for our AIDS housing funding to be cut by two-thirds, from about $1.6 million a year to $600,000.

Two foundations have told us that their portfolio is in trouble. One is cutting back their contribution this year and the other told us to reapply and ask for less.

We wiped out our hot lunches earlier this year, but we’ve decided that has to stay, and so we’re going to bring it back and have layoffs. The food program, for some of these people who come in — some of them have kids — it’s the only meal of the day. Right now we’re serving peanut butter and jelly and what they call “jail soup,” which is dry packets.

Earlier this year, we laid off 21 people — about 10 percent of our staff. It’s very personal for me. A lot of people who work here are former inmates. This is the first place they come when no one else wants to hire them. I started here in 1991 as a counselor. Prior to that, I’d been in prison several times, for robbery the last time, a four-and-a-half year term.

Saturday, September 27, 2008

New Mommy and MS Blog Alert!!

Please welcome Heather to the MS Blogging community.  She's a teacher and has a 5-month old baby boy at home.  Her blog is My Life and Dealing with MS and here is a recent post:

Why I write

First, let me say do not judge me on my writing. I have never been a strong writer and I struggle with words. I'm not here to be creative or to have people enjoy reading what I write. I don't care if people even read my blog. I am here for me. I started this blog so I could have a place to write about my feelings and MS. I have such a wonderful support group but no one truly understands how I feel and what I am going through. I have a very dear friend who was diagnosed with MS at about the same time I was. It sucks to have this happen to a close friend but at the same time it is a blessing to have each other. We talk a lot but I sometimes feel that MS is all we talk about. I read someones blog the other day and it was quoting the quote "I might have MS but MS doesn't have me." I feel the same way they do. It does have me and there isn't a day that goes by that I don't think about it. Now that I have started Rebif I feel like MS is in control of my life. I have my good days where I think positively and then I have my bad days. I know this is true with everyone even if they don't have MS. I am now going through the period of asking why. I just get frustrated to have to give myself shots and have to have my husband help too. I just hate the thought of having to do this for the rest of my life. It pretty much stinks and no one understands unless they are doing it too. They can try to understand but they just won't get it.

Thursday, September 25, 2008

Carnival of MS Bloggers #20 - The Invincibility Edition

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

"Strength and Invincibility"

It was Thursday and Thursday is the day my sister and I meet over at Mom's and have dinner with Mom, my eldest son and his wife, and my granddaughter, and my 10 year old who comes with me.

We were going to go straight there after getting back to town at 6:30 but SOMEbody had to use the bathroom and I decided to check my email. (I am seriously addicted to the internet).

We both get done with our respective tasks and we head out the door, me first. I yell over my shoulder "Make sure it's locked!" and he did.

I looked down at my hand. Uh oh. The keys are by the computer.

This wouldn't have been a big deal had I not relentlessly hounded John into finishing the privacy fence. The only way in was in the back yard and it was a fortress protected by a 6 foot fence with a gate that has 2 (locked) locks.

I look around giving the front yard my best MacGyver I Spy once over sweep in search of how to get over the fence. Aha! There's an A-frame from John's work van haphazardly leaning against the fence, as if inviting someone to climb up and over.

My son climbs up and looks over the other side.

"I dunno, Ma. I think I might get hurt," he says as he comes back down.

"Oh for cryin' out loud" I say impatiently. "Here, let me have that thing." I take the A-frame from him and he points out that our old pool ladder is leaning up against the inside of the fence about 12 feet farther down.

I take the A-frame over to where I can see the ladder between the fence slats. On this side, however, is some construction related material from John's work. Carpet padding, specifically.

I plant the A-frame straddling the roll of padding, sure that it will work just fine even if it is a little wobbly.

Did I mention that we live on an *arterial highway* going through our little town? And this was right around rush hour? Maximum audience.

As I am climbing up, I am thinking to myself "heh. You'd have never caught me trying this last year! I've become darn near invincible! Good thing I wore sneaks instead of flip flops."

And it was right about then, as I had one foot on the top rung and the other poised, mid-air to swing over the top of the fence, that I realized the A-frame was moving and it wasn't a side to side wobble. It was falling away straight out in back of me.

As I fell down onto the top of the fence which hit me right square in the gut, I remember thinking "glad we got that square topped fencing and not that real pointy stuff!" I balanced there for a couple seconds and then began to slide. The fence top caught under my shirt and the rough, unpainted wood proceeded to peel me like a potato as gravity pulled me down.

"YEEEEEOOOOOOOWWWWWWW!!!" was all I could manage to get out as I slid uncontrollably.

Then I realized, to my horror, the fence had scraped right under my shirt and managed to snag under my bra and I was hanging there, in front of the rush hour traffic with my shirt and bra over my head and my feet still off the ground.

Oh. My. God.

So many thoughts racing through my head as my hands worked madly to try and lift my entire body weight off the fence by my snagged shirt and bra.

"I hope my neighbor isn't watching!"
"I hope my son isn't watching...and scarred for life!"
"Man I don't want to find this on youtube!"
"I hope my brand new bra isn't all womped out of shape now! I paid good money for that!"
"That breeze feels kinda nice!"

It was probably only seconds before I was down off the fence. Then I was so busy surveying the carnage that I forgot I had an audience and when I remembered I was frantically trying to cover back up.

So how did we ever get the keys and go to Mom's that night, you ask?

My son, who had fortunately been spared from witnessing the whole tragic act, was around the corner wandering and goofing off, oblivious to it all.

When he saw me crying over my hurt dignity he asked what was wrong and I told him the fence had just beat me up.

He puffed out his chest and strutted over to the fence proclaiming "I'm not letting MY mom get hurt again! I'm going over the fence!" He proceeded to climb with a purpose and was up and over the fence without so much as a splinter to show for it.

He was in the back and out the front with keys in hand before my stomach and chest had even done welting up and bleeding and turning black and blue.

So, there could be one more side effect of Fingolimod that I hadn't considered.

The bottle should say "Caution: May cause feelings of grandeur and invincibility that could cause you to go temporarily insane and make a 47 year old do something that only 10 year olds should even attempt."


"Caution, always tuck in your shirt while taking this drug. May get hooked on fence and hang naked in front of traffic. Be sure to stay away from all fences before you know how you will react to this medication."


"Stop taking this medication and consult your physician immediately if you find yourself hanging by your shirt from your fence during rush hour with your boobs exposed for all to see. This could be a serious reaction and may need medical attention, especially if scrapes, swelling and bruising develop."

If I have anything to say about what the warning labels will be, that should about cover it.

by Michael of Perspective is Everything
Living with a disease like multiple sclerosis, or many others for that matter, can be very unpredictable. One day you feel strong, the next day you don’t. One day you are asymptomatic. The next day you have a new symptom that won’t go away. Diseases are just like life. Every event, every instance falls into one of three categories:
  • The things we control
  • The things we influence
  • The things over which we have no control
I choose to exercise as much influence and control over my disease as I possibly can. Let me explain what I mean by that………

A few months ago, my right hip started to give out. Typically, when this happened I fell down….and I don’t like falling down! I went to see the chiropractor to get an adjustment. I went to the orthopedist and got an x-ray and an MRI. I went to see my neurologist and my physical therapist, too. Since nothing showed up on the x-ray or MRI, the consensus was that the weakness was caused by a weakening of the hip muscles…..caused by MS.

So here is what I did about it: I started exercising my right side. I exercised it at least four days a week. In time, I started exercising my left side too. Now, I exercise five to six times a week. Do you know what happened? My hip got stronger and stopped giving out and I stopped falling down.

About two months later, I started having lower back pains. I saw the chiropractor and the acupuncturist and that helped for awhile. But then, a few weeks later, the pain was back with a vengeance. It was so bad that I could not stand up or walk. I could barely move. At home, I normally use a walker to get around, but for a few days, I used a wheelchair in the house. The chiropractor came to my home. So did the acupuncturist. I was able to move, but only a little. I saw my neurologist and my physical therapist. Again, the consensus was the same: the disease was progressing.

The physical therapist explained it best: my quadriceps (the muscles of the thighs) had become so weak that the way I walked was putting a great amount of stress on my lower back, which wasn’t that strong either. “THAT’S GREAT NEWS” I said. “That’s something I can do something about.”

So I did something about it. I added exercises to my workout to strengthen my ‘quads’, lower back and core. Guess what is happening? I am getting stronger. These new symptoms may be the best thing that has happened to me in these past few years because they have put me in control of how I manage this disease. I am getting stronger, more disciplined and more determined to not allow this disease to overtake me, at least not yet. In fact, the physical therapist calls the exercises we do today “pre-gait exercises.” Pre-gait means “before walking.” Am I going to improve my walking? You bet. Will I be able to walk without a walker? We will see. What I will do is the best that I can.

We may not always have the ability to do something about what is happening with our bodies and our diseases. We can be defeated or energized. We can do all we can to combat what is happening or we can do nothing at all. We can focus on all the abilities that we have lost or focus on all the abilities that we still have. One thing is for sure, we always have a choice in how we respond.

New symptom? Bring it on. Teach me how to respond to it, manage it, beat it and be stronger. It is not easy. But it is my disease, my condition and it is my job to do as much as I can about it for as long as I can……which I plan on doing for a very long time.

Participate. Make a difference. Live a life that matters.

This concludes the 20th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 9, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 7, 2008.

Thank you.
Comments for this post.

Wednesday, September 24, 2008

Are You an MSer Who Protected Your Home from Foreclosure?

I received this email yesterday and thought that maybe, just maybe, somebody might be interested in being interviewed for a NMSS magazine article.

Hello all,

You are receiving this email because you are some of my most knowledgable and trusted sources. If you don't want to receive these emails in the future, please let me know and I'll be happy to remove you.

I'm working on a story for Momentum Magazine, the Magazine of the National MS Society, on foreclosure--specifically, how to save your home from foreclosure if you're facing high medical bills as a result of your MS symptoms. We want to celebrate the people who were tenacious enough and smart enough to protect their homes from this foreclosure glut.

Is this you, or do you know someone who might fit the bill? If so, I'd love to talk to you. Feel free to forward this email to people you know who have MS and may themselves know someone in this predicament. Or if you have suggestions of where I might be able to find someone who fits the bill, please don't hesitate to let me know.

Thanks again.


Contact by Email

I was interviewed by Heather in July for an article which will be appearing in the next Momentum magazine.  The article discusses financial issues.

If you have any questions to ask about my experience in working with Heather, please feel free to ask.

Tuesday, September 23, 2008

Obama is My Choice

Ok. Here I go. Senator Barack Obama is my choice for President.
Please listen and read more. Educate yourself on the policy issues.

Most importantly - VOTE!!!

Monday, September 22, 2008

A Mother's Message to Her Baby - the Daughter of a Newly-Diagnosed MS Patient

During pregnancy, certain protein and corticosteroid levels are elevated producing an immunosuppressant effect.  MS exacerbation rates tend to rise in the three to six months postpartum and the risk of a relapse is estimated to be 20-40% after childbirth, according to the National Multiple Sclerosis Society.

Amanda is the new mother of a beautiful six month old daughter, Hazel.  Amanda began experiencing pins/needles and numbness in her hands and on her torso at the very beginning of September.  She consulted with her doctor on September 11 which began her path to diagnosis.  Her lumbar puncture was on Thursday and she is awaiting the results.

Here is a beautiful note which Amanda wrote to her young daughter in the blog which is to be Hazel's first-year baby book.  I'm sure that there are plenty of mothers who can relate.

I hate writing these updates, especially since it is all going downhill for me.  But I cannot stop writing, and I cannot stop this blog, as much as I would like to crawl into bed and never come out.  I am compelled to record for Hazel the first year of her life, in all its detail.  This is something that is going to effect her forever, and will shape her life and personality.  I want her to know where it all started.  And that it all started on September 11, 2008.  And that the first six months of her life were lived in blissful ignorance and all-consuming love.  I know she won't remember that, but Hazel, if you are reading this sometime in the far future looking for some kind of insight into me or you or us, know that the first six months of your life were filled with snuggles, naps, giggles, tickles, games, dancing, singing, friends and family.  The only thing I ever want for you is for that to continue.  Most of it will, certainly you will remain the most loved child there ever was, but things will probably change from here on out. You wont be aware of it though, and whether its a blessing or not I don't know.  All I know is that from your perspective, in your memory, you will always have been someone who's mother has multiple sclerosis.  But know that you weren't.

Saturday, September 20, 2008

Depression, Emotions, and Doctor's Visits

Here are some things I've written recently for your reading pleasure:

Depression, Inflammation, and Multiple Sclerosis
The Blues are Nothing More than a Lack of Red in Your Life -
Paint Your Walls Pink and You'll Never be Sad Again

[T]he first year for me was the hardest.... because of the myriad of emotions slapping me upside the head.

How to Prepare for Your Doctor's Visit
Do you ever leave your doctor’s office and think of questions you forgot to ask?
I’ve done this too many times, but now I’ve developed a plan which has turned out to be highly successful. Here’s what I do.

Wednesday, September 17, 2008

"Those People" would be all of US!!!

At Mind, Body, Spirit, one of my very favorite physician blogs, a child neurologist discusses an important issue regarding health insurance and society in Those People. Thank you doctor, from one child of God to another.

Those People
As the presidential debates get revved up, I have been scrutinizing their health care plans. Both candidates rightly insist that something must be done to cover the ballooning and exploding population of uninsured in this country. For both, the solution will likely include a hit to the pocketbook of Joe Public, whether through taxes, or through private insurance companies that we are required to purchase coverage from. This has the standard libertarian masses quite upset. One thing I am hearing more and more about in the argument against universal Health care coverage is “those people.”

Those people are the ones who sit at home and play video games on unemployment. Those people are the ones who are on crack and meth, spending money on it instead of diapers or health insurance. Those people are the ones who don’t exercise any responsibility for their own health and a fat, lazy, smokers all. Those people are a drain on our economy and a blight on our society.

I have absolutely no question that taking responsibility for our own health is vitally important and is dying. I do understand some of the worry about entitlement mentality. I have on occasion seen some of “those people” in clinic who may be suffering the consequences of their choices and actions.

Here is the problem. They are generally not my patients, they are the parents. Often they are the absent parent, you know the stereotypic “deadbeat dads” we all rightly condemn. You see, single mothers have a very difficult time getting jobs with health insurance. Especially as businesses are hurting as they try to pay for it, cutting more and more benefits.

Here is another problem, epilepsy. It turns out that anybody can have seizures. They may strike at any point in someone’s life and are particularly common in childhood. They commit you to at least two years of drug therapy. They raise insurance prices for us all. For people who are angry at rising health care and insurance costs, I fear too many will become those people. Too many will be thought to have seizures from drugs because they don’t have insurance. So what if premiums are five times what someone in good health’s might be. It’s okay because they are “those people.”

Insurance companies have motive to charge or exclude the smokers and the obese. It turns out they have the same motive to exclude those with Cerebral Palsy and Multiple Sclerosis. This motive applies to any family with cystic fibrosis or sickle cell disease, or an entire host of genetic disorders. They really need to get rid of those with type I diabetes and as we start to push against type II diabetes as caused by obesity and not taking care of yourself, Diabetes is diabetes, right?

Wrong, they are completely different diseases, the former with no lifestyle factors, hitting people almost at random and committing them to a lifetime of expensive insulin and increasing risk for severe health problems as they age, the latter with lifestyle factors that have become alarmingly commonplace, even normal.

“Those people” can be stretched to cover a variety of lifestyle choices. “Those people” could include Sarah Palin and the like, for refusing to abort babies with down syndrome. “Those people” could in the future include any parent who does not abort for any bad gene whatsoever. Certainly, It must cost less to genetically engineer healthy children than care for “those babies.” Eventually, “those people” could be anyone that is not part of the master race with the right hair, eye and skin color. After all, we all know “those people” are no good.

“Those people” will quickly become anyone over a certain age in the ICU who does not make themselves DNR, regardless of their comorbidities. After all, it will be much cheaper for us all if we could just let the elderly die in peace. They may have compelling reasons to fight on for life, but they’re costing the rest of us money and that is unforgivable. They don’t recover as well from surgery so they should just live with their gall stones and welcome a burst appendix as their release from the cares of this world.

“Those people” could become those with Major Depression because we all “know” that making the wrong choices is what makes us depressed. Mental Illness is “in your head,” after all. We who live right could never have such misfortune. Post traumatic stress only happens to gangbangers. In fact, schizophrenia and autism must be bad parenting too, come to think of it. That could save a whole lot of money and taxes if only it were true.

In fact, we would probably be much better off if we just got rid of medical care entirely. Let nature kill off the weak the way it was intended in the first place. We aren’t letting evolution work the way it is supposed too anymore. Then we really will have a master race consisting only of the beautiful people, not “those people” who are just no good, inferior choices, inferior genes, inferior minds, just plain inferior.

I hope I have exaggerated my point tongue in cheek enough to make it clear. I don’t think blaming people for poor health will lead to anything good. The financial incentive is there to demonize a whole bunch of people simply because they need help. That is not a society that I want any part of. Personally, I will gladly pay more taxes if it helps the weakest among us. I don’t know if the private insurance thing will ever fly because there is just too much market incentive to cherry pick the healthy groups and leave out the unhealthy. If we blame the patients, it will then become all too easy.

But that is the subject of a different post. This post is about bigotry, hate, pride, and what lengths man will go to in order to feel okay about not helping the poor. We have the potential to become true monsters. If it’s all the same, I am going to do everything within my power to avoid becoming one of “these people.” It pays to remember that there but for the grace of God, go we, in the case of both the chronically ill and the chronically prejudiced. I firmly believe that there are no ”those people” only people, only children of God.

Calling the Collective Conscience for Creative Ideas

Kim of Mandatory Rest Period needs your help!

She's looking for ideas and recommendations to pass on to a friend. Please read the following post. If you have ideas to share, please go to the original post and comment there or send Kim an email at restperiod (at) gmail (dot) com.
So, I have a big favour from all of you and I'd like to tap into your compassion and experience and expertise. I have a good friend who has a sister with PPMS. I don't know a lot about this "version" of this disease other than the progressive nature can be very severe. My friend lives a province away from her sister and can only send things to her. She wants to continue to stay in contact but cannot have phone conversations with her as this is too difficult a task for her sister to handle. So here is the question I've been asked. What can she send to her that would be appropriate, helpful, and most importantly respectful towards where she is at in her disease?

Here is her sisters condition as I have learned:
  • She was given perhaps 5 years to live on getting diagnosed in her early 30's. She is now 41 and is quite far progressed with her MS
  • Can not walk, is assisted in/out of bed, has spasms in extremities
  • Can not communicate well, does not have strong cognitive function but does remember family members, just not time frames, sometimes confuses yes or no answers about where she has spent her time in a day
  • bladder, fistula problems and colestomy bag complications are routine
  • seems to enjoy music, watches TV but doesn't take part in much else. She is in an assisted living facility who try to keep her as involved as possible. She does massage, physio etc as well to help with keeping her limber.
  • Eating is difficult if not in finger food type portions. Otherwise she is assisted to eat.
  • Cards, pictures and letters read to her have all been met with a happy reaction
So, if any of you have any recommendations as to what could be sent to perhaps give her something to enjoy from a family member that you know to be appropriate, I would really like to hear from you. Please pass this along to anyone else you know that has MS or has a family member with MS who could share their experiences. Thank you SO much everyone! Feel free to leave a comment, or email me directly at restperiod at gmail dot com.
I also thank you all in advance for your suggestions to Kim.

Also I'd like to thank those who have generously donated funds for the purchase of the specialized cushion for Herrad. We are just beyond 50% of our goal, but still need more contributions. Please continue to spread information regarding the project.

What it would take to reach our goal:
$15 each - 18 donations
$20 each - 14 donations
$25 each - 11 donations
$30 each - 9 donations
$35 each - 8 donations
$40 each - 7 donations
$45 each - 6 donations
$55 each - 5 donations
$70 each - 4 donations

Donations can be made through the PayPal link on the sidebar of the blog. Thanks.

Tuesday, September 16, 2008

What I've Been Saying All Along.....

Beginning with Guiliani's health proposals last summer and continuing with McCain's plan, I've been saying that folks would be shocked if they had the type of insurance I have.  

But this is exactly what John McCain proposes more people utilize - the individual health insurance market.  And as far as tax advantage, well, read this New York Times Op-Ed published September 16, 2008 and make up your own mind.

Talk about a shock to the system. Has anyone bothered to notice the radical changes that John McCain and Sarah Palin are planning for the nation’s health insurance system?

These are changes that will set in motion nothing less than the dismantling of the employer-based coverage that protects most American families.

A study coming out Tuesday from scholars at Columbia, Harvard, Purdue and Michigan projects that 20 million Americans who have employment-based health insurance would lose it under the McCain plan.

There is nothing secret about Senator McCain’s far-reaching proposals, but they haven’t gotten much attention because the chatter in this campaign has mostly been about nonsense — lipstick, celebrities and “Drill, baby, drill!”

For starters, the McCain health plan would treat employer-paid health benefits as income that employees would have to pay taxes on.

“It means your employer is going to have to make an estimate on how much the employer is paying for health insurance on your behalf, and you are going to have to pay taxes on that money,” said Sherry Glied, an economist who chairs the Department of Health Policy and Management at Columbia University’s Mailman School of Public Health.

Ms. Glied is one of the four scholars who have just completed an independent joint study of the plan. Their findings are being published on the Web site of the policy journal, Health Affairs.

According to the study: “The McCain plan will force millions of Americans into the weakest segment of the private insurance system — the nongroup market — where cost-sharing is high, covered services are limited and people will lose access to benefits they have now.”

The net effect of the plan, the study said, “almost certainly will be to increase family costs for medical care.”

Under the McCain plan (now the McCain-Palin plan) employees who continue to receive employer-paid health benefits would look at their pay stubs each week or each month and find that additional money had been withheld to cover the taxes on the value of their benefits.

While there might be less money in the paycheck, that would not be anything to worry about, according to Senator McCain. That’s because the government would be offering all taxpayers a refundable tax credit — $2,500 for a single worker and $5,000 per family — to be used “to help pay for your health care.”

You may think this is a good move or a bad one — but it’s a monumental change in the way health coverage would be provided to scores of millions of Americans. Why not more attention?

The whole idea of the McCain plan is to get families out of employer-paid health coverage and into the health insurance marketplace, where naked competition is supposed to take care of all ills. (We’re seeing in the Bear Stearns, Fannie Mae, Freddie Mac, Lehman Brothers and Merrill Lynch fiascos just how well the unfettered marketplace has been working.)

Taxing employer-paid health benefits is the first step in this transition, the equivalent of injecting poison into the system. It’s the beginning of the end.

When younger, healthier workers start seeing additional taxes taken out of their paychecks, some (perhaps many) will opt out of the employer-based plans — either to buy cheaper insurance on their own or to go without coverage.

That will leave employers with a pool of older, less healthy workers to cover. That coverage will necessarily be more expensive, which will encourage more and more employers to give up on the idea of providing coverage at all.

The upshot is that many more Americans — millions more — will find themselves on their own in the bewildering and often treacherous health insurance marketplace. As Senator McCain has said: “I believe the key to real reform is to restore control over our health care system to the patients themselves.”

Yet another radical element of McCain’s plan is his proposal to undermine state health insurance regulations by allowing consumers to buy insurance from sellers anywhere in the country. So a requirement in one state that insurers cover, for example, vaccinations, or annual physicals, or breast examinations, would essentially be meaningless.

In a refrain we’ve heard many times in recent years, Mr. McCain said he is committed to ridding the market of these “needless and costly” insurance regulations.

This entire McCain health insurance transformation is right out of the right-wing Republicans’ ideological playbook: fewer regulations; let the market decide; and send unsophisticated consumers into the crucible alone.

You would think that with some of the most venerable houses on Wall Street crumbling like sand castles right before our eyes, we’d be a little wary about spreading this toxic formula even further into the health care system.

But we’re not even paying much attention.

Monday, September 15, 2008

Saturday, September 13, 2008

Get Your Cup of Lemon-Aid Here!!


Meet Abby at The Lemon~Aid Stand

"When Life Gives You Lemons...."

Abby was very recently diagnosed with MS and is the mother of four children.  She just finished some steroids and got to see what her sparkly lesions look like.  Abby will be joining the ranks of those who put some of their hope into those self-injections.

Please Welcome Abby to the MS Blogger community.  

Here's what she said on Thursday:

My neurologist appointment went well yesterday. I got to see the pretty MS lesions on my brain and spine. The good news is, no more prednisone--YAY!! The bad news--daily injections for the rest of my life--not so yay. But, if it helps prevent further attacks, I will do whatever it takes. I'm not sure when I'm supposed to be starting it, they are supposed to call me with more info later today.

Yesterday, after I dropped the kids off at school, I went to feed our guniea pig, whom we've had for almost five years, and he was dead. My son took it fairly well, my daughter had some heartbreak. So I decided to take them to get them each a hamster. Instead we came home with four gerbils. Damn cute little ones they are. They are all females, so no baby-making will be happening. Then last night, after we got back home, we had a little burial for poor little guniea pig.

In other news, I'm going back to work on Monday. My right hand and arm is still numb, which may or may not go away, so I'm a little nervous (dental hygienist here), but I think I'll be OK. I no longer have any weakness there, so I'm going to give it a whirl. If I think there is going to be a problem, or if I think my patients safety is going to be a concern, then I just won't do it and I'll find a new career. Doing what, I have no clue! Hopefully my chubby, moon pie face will have gone down by Monday so I don't have to go in looking so swollen.

That's all for now.

Thursday, September 11, 2008

Carnival of MS Bloggers #19

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

"Please Be Gentle Here"

In a new MS blog - Chemo Is Not A Pony - Xenu discusses Ataxia, Chinese Hamsters, and Sesame Street Band-Aids including a profound look at Chronic Illness.
Today I woke up with major ataxia in my arms, hands, legs, and feet. This has happened around a half a dozen times over the course of the past year. Usually it lasts around 24 hours and then disappears. I think the longest it’s ever lasted was close to 48 hours.

I am clumsy, uncoordinated, dropping things, tripping, walking oddly.

It was also an injection day and, for some reason, the chinese hamsters hurt like hell going in. [See the original post for an explanation of “chinese hamsters.”]

I remember one time that Lisa, over at Brass and Ivory, commented that she doesn’t use a Band-Aid on her injection sites because it is unnecessary. I use a Band-Aid, but not for physical reasons. I am aware that the blood clots within seconds of withdrawing the needle, and that the wound is tiny anyway.

When I place a Band-Aid over my injection site, it is for purely psychological reasons. I buy boxes of colorful children’s Band-Aids—Dora the Explorer, Sesame Street, Hello Kitty, etc. Affixing one to the site is soothing; it says, This is over now. It labels the wounded area. It communicates to other people: Please be gentle here. This part hurts. I am vulnerable. It covers up with cartoons and superheroes the memory of a puncture and the evidence of ongoing internal damage in the form of an incurable disease. The Band-Aids are an attempt to “make better,” to heal, what cannot be made better and cannot be healed.

Lazy Julie, who really isn't lazy, creates fabulous MS Haikus and clever art.

Sleep evades me now.
Insomnia is my foe
MS gets so tired.

My upper arms ache.
Result of ex-stress no doubt.
My power. My choice.

Bad TV. Scrabble.
Escape routes for boring moms.
Only numbs the pain.

No meeting weekend.
Big surprise I feel like crap.
Serenity now!

Mind Sparkles. MS.
Lesions abound. Brain and spine.
Can't wish them away.

All meaning changes.
MS. It used to spell Ms.
I want that back now.

of Disabled Not Dead discusses family, sleep, and Restless Leg Syndrome.
I have had this for as long as I can remember...even as a young child. I "inherited" it from my mother and grandmother. Of course, I say that in jest because I have no idea if it is inherited or not.

When I was a child (from age 4 to 9), my Gran slept with me in my bed because she stayed overnight alot and there was no extra bed for her to sleep. I can remember her rubbing her legs into the wee hours of the morning as they danced and spasmed with a mind of their own. Many a morning I went to school as tired as I was when I went to bed because my Gran's RLS not only kept her awake, it interrupted my sleep too.

After my parents divorced, my mother rented my room out to a boarder, so I had to sleep with her. Rerun time! She had the same thing going on that my Gran did. I can remember my Gran complaining about her restless legs over breakfast in the morning and my mother telling her to stop complaining. Years later, my mother would complain and Gran would tell her to stop complaining!! LOL

My mother was an alcoholic as well (Gran didn't drink) and she tried "medicating" it with booze for most of her adult life. Didn't help much from what I could see. When I entered 8th grade, my mother took me to her doctor because between the two of us with restless legs in the bed, neither of us was getting much sleep. She didn't bother seeking help until "I started keeping her up at night." !!!!!!!!!!!!!

Doc ordered Valium for both of us, except she mixed it with the booze. He gave me a list of foods to avoid that might stir up the legs. I was already on a Celiac's disease diet from age 9 and most of the bad foods were already avoided. So in later years (before Requip) my RLS had to be quelled by my own investigations and research. I learned what stirred it up, activities to avoid or prepare for, and some ways to help with the constant jumping when I didn't get RLS med on time.
Please read the rest of Anne's post here. where she discusses how restless legs can be associated with multiple sclerosis.

Update on Fundraising for Herrad's Cushion.

Herrad is a fellow MS blogger who writes at Access Denied-Living with MS.

Here is an excerpt from an email she recently sent to Anne and myself.
Thank you all very much its a moving experience that you all support me like you do. Its given me a tremendous boost, as well as reminding me about the important things in life.
The wound nurse from the Rehabilitation Center Amsterdam and my doctor recommend that I stay in bed for another month. The nurse was here this morning and said one month from now.
Its a deep and nasty pressure sore which will take a long time to heal. And when it does heal I have to be very careful. Will not be able to sit as long as I have been, will have to have breaks in the day when I lie down.
Will get Richie to measure my wheelchair cushion so you know which size cushion I need, think its different to the 18 x 18 measurements of one of the cushions. By the way which measurements do you use in the U.S?
I have been advised by the nurse and the ergotherapist that I need the custom built cushion not the overlay which does not give enough protection. I am by the way totally immobilized and can only move my arms and can not sit on a plastic surface as that will allow me to slip which is bad for pressure sores.
Thanks again for all the support and for the friendship and the love that I have been lucky to receive from you and all the other MS bloggers in the US, you are all wonderful people and help me tremendously.
Take care of yourselves.

We have collected $335 of our $600 goal. Please consider donating and/or helping to spread the word. To donate to Herrad's Cushion click on the PayPal Button below. Together we can make this happen for a fellow MS Blogger in need.


This concludes the 19th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 25, 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, September 23, 2008.

Thank you.
Comments for this post.

Wednesday, September 10, 2008

How Am I Going To Pay For This?

The story continues.....

If you've been following MY STORY which I've been dragging out *FOREVER* (see links on sidebar), then you must catch the next saga.  I will very likely write much more about this chapter in my MS journey, but for now you get a rough/dirty version over at Health Central.

Here's a little teaser:

“Congratulations! You qualify for a 50% award!” says the woman from Shared Solutions.

What does that mean...50%?

“NORD (National Organization for Rare Disorders, Inc.) reviewed your application and determined that you are eligible to receive 50% of a year’s supply of Copaxone for free.”

Does that mean I have to pay 50% of the cost each month?

“No, it says here that you will get 6 months of Copaxone, will be responsible for paying shipping & handling ($100 every 3 months), and will be personally responsible for the other 6 months. That gives you time to save up for it.”

But I can’t AFFORD that!!

“If your financial situation changes during the year, you can appeal for additional help from NORD. I’d suggest doing that in the spring.”

To read the rest, go to "How Am I Going To Pay For This?"

Monday, September 8, 2008

Because this is important to all of us...

Nation; Tubes; Down by Sid Schwab at Surgeonsblog
Eight years ago, we elected as president the short-term governor of an oil state, unschooled and uninterested in foreign policy; a denier of evolution; a doubter of man's role in global warming; a believer that homosexuals are sinners who deserve unequal rights; a person who needed others to tell him what to think and do; a scoffer at opponents, a fomenter of cultural wars, a hater of freedom of the press. That person misled us into and mismanaged a war, changed an economy of balanced budget and enormous job-creation into one of crushing debt and crashing markets. Eight years later, John McCain put lipstick on him and made him his vice-president.

Neither convention was a paragon. Bloviation abounded aplenty. But from only one did you hear a steady stream of mockery, derision, and hatred. Only one party paraded to the podium a panel of promulgators of profound and protracted putrefaction. Into the old pocket of political hypocrisy they reached, drawing out a hand dripping with the usual tropes of "elitism," media-bashing, demonizing of the other party.

And it's working.

The nation, evidently, is gaga over a person with absolutely no excuse to be President other than a story. And a phony one at that: no rejector of earmarks, she; no turner-away from vindictiveness, no believer in library books. But it doesn't matter. She's perfect, because... because.... why, exactly?

There is more to read here.

Saturday, September 6, 2008

Carnival Submissions Due

Just a reminder that submissions for this week's Carnival of MS Bloggers are due Tuesday morning, September 9, 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.

On a side note: The Brass and Ivory blogger herself turns 40 years of age in about 12 hours.

ME = 40 = Yikes!!

Friday, September 5, 2008

Individual vs. Group Health Policies

I'm bringing back the topic of Health Care Policy. With a historic presidential election in just a matter of days, the topic of Health Care is once again rising to the top.... at least the top of my mind.

Extending the discussion of Health Insurance Woes, I share with you "Obtaining Health Insurance: Individual vs. Group Plans" posted at Health Central.

Coincidentally, Mandy writes "Health Care? It's all in the numbers."

Can you smell it - Health Cares in the Air.....

Thursday, September 4, 2008

Health Insurance Woes

I came across the following quote and thought to myself - 

That's it!! That's why my prescription coverage sucks.

"It could be that the purpose of your life is only to serve as a warning to others."

To find out what I'm talking about read - 

Wednesday, September 3, 2008

Brave Woman Discusses Sarah Palin's Political Actions

I apologize to my readers.  I did not realize that the following had become a viral email over the internet.  I have removed reference to Anne Kilkenny's email address.  There was a NYT article yesterday, "Palin's Start in Alaska: Not Politics as Usual," which referenced Ms. Kilkenny.

Today over at GoozNews, I read - "Who Is Sarah Palin? A Voice from Alaska Speaks" - which is the question so many citizens are asking with the Republican Nomination for Vice President during this Presidential election season.

I found this to be very informative and very brave coming from "a local citizen who has known Sarah Palin personally and as a politician for most of her adult life."

Merrill Goozner says, "Worth reading for an unvarnished view of a person who would be a heartbeat away from the presidency:"


I am a resident of Wasilla, Alaska. I have known Sarah since 1992. Everyone here knows Sarah, so it is nothing special to say we are on a first-name basis. Our children have attended the same schools. Her father was my child's favorite substitute teacher. I also am on a
first name basis with her parents and mother-in-law. I attended more City Council meetings during her administration than about 99% of the residents of the city.

She is enormously popular; in every way she's like the most popular girl in middle school. Even men who think she is a poor choice and won't vote for her can't quit smiling when talking about her because she is a "babe".

It is astonishing and almost scary how well she can keep a secret. She kept her most recent pregnancy a secret from her children and parents for seven months.

She is "pro-life". She recently gave birth to a Down's syndrome baby. There is no cover-up involved, here; Trig is her baby.

She is energetic and hardworking. She regularly worked out at the gym.

She is savvy. She doesn't take positions; she just "puts things out there" and if they prove to be
popular, then she takes credit.

Her husband works a union job on the North Slope for BP and is a champion snowmobile racer. Todd Palin's kind of job is highly sought-after because of the schedule and high pay. He arranges his work schedule so he can fish for salmon in Bristol Bay for a month or so in
summer, but by no stretch of the imagination is fishing their major source of income. Nor has her life-style ever been anything like that of native Alaskans.

Sarah and her whole family are avid hunters.

She's smart.

Her experience is as mayor of a city with a population of about 5,000 (at the time), and less than 2 years as governor of a state with about 670,000 residents.

During her mayoral administration most of the actual work of running this small city was turned over to an administrator. She had been pushed to hire this administrator by party power-brokers after she had gotten herself into some trouble over precipitous firings which had given rise to a recall campaign.

Sarah campaigned in Wasilla as a "fiscal conservative". During her 6 years as Mayor, she increased general government expenditures by over 33%. During those same 6 years the amount of taxes collected by the City increased by 38%. This was during a period of low
inflation (1996-2002). She reduced progressive property taxes and increased a regressive sales tax which taxed even food. The tax cuts that she promoted benefited large corporate property owners way more than they benefited residents.

The huge increases in tax revenues during her mayoral administration weren't enough to fund everything on her wish list though, borrowed money was needed, too. She inherited a city with zero debt, but left it with indebtedness of over $22 million. What did Mayor Palin encourage the voters to borrow money for? Was it the infrastructure that she said she supported? The sewage treatment plant that the city lacked? or a new library? No. $1m for a park. $15m-plus for construction of a multi-use sports complex which she rushed through to build on a piece of property that the City didn't even have clear title to, that was still in litigation 7 yrs later--to the delight of the lawyers involved! The sports complex itself is a nice addition to the
community but a huge money pit, not the profit- generator she claimed it would be. She also supported bonds for $5.5m for road projects that could have been done in 5-7 yrs without any borrowing.

While Mayor, City Hall was extensively remodeled and her office redecorated more than once.

These are small numbers, but Wasilla is a very small city.

As an oil producer, the high price of oil has created a budget surplus in Alaska. Rather than invest this surplus in technology that will make us energy independent and increase efficiency, as Governor she proposed distribution of this surplus to every individual in the state.

In this time of record state revenues and budget surpluses, she recommended that the state borrow/bond for road projects, even while she proposed distribution of surplus state revenues: spend today's surplus, borrow for needs.

She's not very tolerant of divergent opinions or open to outside ideas or compromise. As Mayor, she fought ideas that weren't generated by her or her staff. Ideas weren't evaluated on their merits, but on the basis of who proposed them.

While Sarah was Mayor of Wasilla she tried to fire our highly respected City Librarian because the Librarian refused to consider removing from the library some books that Sarah wanted removed. City residents rallied to the defense of the City Librarian and against Palin's attempt at out-and-out censorship, so Palin backed down and withdrew her termination letter. People
who fought her attempt to oust the Librarian are on her enemies list to this day.

Sarah complained about the "old boy's club" when she first ran for Mayor, so what did she bring Wasilla? A new set of "old boys". Palin fired most of the experienced staff she inherited. At the City and as Governor she hired or elevated new, inexperienced, obscure people, creating a staff totally dependent on her for their jobs and eternally grateful and fiercely loyal--loyal to the point of abusing their power to further her personal agenda, as she has acknowledged
happened in the case of pressuring the State's top cop (see below).

As Mayor, Sarah fired Wasilla's Police Chief because he "intimidated" her, she told the press. As Governor, her recent firing of Alaska's top cop has the ring of familiarity about it. He served at her pleasure and she had every legal right to fire him, but it's pretty clear that an important factor in her decision to fire him was because he wouldn't fire her sister's ex- husband, a State Trooper. Under investigation for abuse of power, she has had to admit that more than 2 dozen
contacts were made between her staff and family to the person that she later fired, pressuring him to fire her ex-brother-in- law. She tried to replace the man she fired with a man who she knew had been reprimanded for sexual harassment; when this caused a public furor, she
withdrew her support.

She has bitten the hand of every person who extended theirs to her in help. The City Council person who personally escorted her around town introducing her to voters when she first ran for Wasilla City Council became one of her first targets when she was later elected Mayor. She abruptly fired her loyal City Administrator; even people who didn't like the guy were
stunned by this ruthlessness.

Fear of retribution has kept all of these people from saying anything publicly about her.

When then-Governor Murkowski was handing out political plums, Sarah got the best, Chair of the Alaska Oil and Gas Conservation Commission: one of the few jobs not in Juneau and one of the best paid. She had no background in oil & gas issues. Within months of scoring this great job which paid $122,400/yr, she was complaining in the press about the high salary. I was told that she hated that job: the commute, the structured hours, the work. Sarah became aware that a member of this Commission (who was also the State Chair of the Republican Party) engaged in unethical behavior on the job. In a gutsy move which some undoubtedly cautioned her could be political suicide, Sarah solved all her problems in one fell swoop: got out of the job she
hated and garnered gobs of media attention as the patron saint of ethics and as a gutsy fighter against the "old boys' club" when she dramatically quit, exposing this man's ethics violations (for which he was fined).

As Mayor, she had her hand stuck out as far as anyone for pork from Senator Ted Stevens. Lately, she has castigated his pork-barrel politics and publicly humiliated him. She only opposed the "bridge to nowhere" after it became clear that it would be unwise not to.

As Governor, she gave the Legislature no direction and budget guidelines, then made a big grandstand display of line-item vetoing projects, calling them pork. Public outcry and further legislative action restored most of these projects--which had been vetoed simply
because she was not aware of their importance-- but with the unobservant she had gained a reputation as "anti-pork".

She is solidly Republican: no political maverick. The State party leaders hate her because she has bit them in the back and humiliated them. Other members of the party object to her self-description as a fiscal conservative.

Around Wasilla there are people who went to high school with Sarah. They call her "Sarah Barracuda" because of her unbridled ambition and predatory ruthlessness. Before she became so powerful, very ugly stories circulated around town about shenanigans she pulled to be made point guard on the high school basketball team. When Sarah's mother-in-law, a highly respected member of the community and experienced manager, ran for Mayor, Sarah refused to endorse her.

As Governor, she stepped outside of the box and put together of package of legislation known as "AGIA" that forced the oil companies to march to the beat of her drum.

Like most Alaskans, she favors drilling in the Arctic National Wildlife Refuge. She has questioned if the loss of sea ice is linked to global warming. She campaigned "as a private citizen" against a state initiative that would have either a) protected salmon streams from pollution from mines, or b) tied up in the courts all mining in the state (depending on who you listen to). She has pushed the State's lawsuit against the Dept. of the Interior's decision to list polar bears as threatened species.

McCain is the oldest person to ever run for President; Sarah will be a heartbeat away from being President.

There has to be literally millions of Americans who are more knowledgeable and experienced than she.

However, there's a lot of people who have underestimated her and are regretting it.


*"Hockey mom": true for a few years

*"PTA mom": true years ago when her first-born was in elementary school, not since

*"NRA supporter": absolutely true

*social conservative: mixed. Opposes gay marriage, BUT vetoed a bill that would have denied benefits to employees in same-sex relationships (said she did this because it was unconstitutional) .

*pro-creationism: mixed. Supports it, BUT did nothing as Governor to promote it.

*"Pro-life": mixed. Knowingly gave birth to a Down's syndrome baby BUT declined to call a special legislative session on some pro-life legislation

*"Experienced": Some high schools have more students than Wasilla has residents. Many cities have more residents than the state of Alaska. No legislative experience other than City Council. Little hands-on supervisory or managerial experience; needed help of a city administrator to run town of about 5,000.

*political maverick: not at all

*gutsy: absolutely!

*open & transparent: ??? Good at keeping secrets. Not good at explaining actions.

*has a developed philosophy of public policy: no

*"a Greenie": no. Turned Wasilla into a wasteland of big box stores and disconnected parking lots. Is pro- drilling off-shore and in ANWR.

*fiscal conservative: not by my definition!

*pro-infrastructure: No. Promoted a sports complex and park in a city without a sewage treatment plant or storm drainage system. Built streets to early 20th century standards.

*pro-tax relief: Lowered taxes for businesses, increased tax burden on residents

*pro-small government: No. Oversaw greatest expansion of city government in Wasilla's history.

*pro-labor/pro- union. No. Just because her husband works union doesn't make her pro-labor. I have seen nothing to support any claim that she is pro-labor/pro- union.


First, I have long believed in the importance of being an informed voter. I am a voter registrar. For 10 years I put on student voting programs in the schools. If you google my name (Anne Kilkenny + Alaska), you will find references to my participation in local government,
education, and PTA/parent organizations.

Secondly, I've always operated in the belief that "Bad things happen when good people stay silent". Few people know as much as I do because few have gone to as many City Council meetings.

Third, I am just a housewife. I don't have a job she can bump me out of. I don't belong to any organization that she can hurt. But, I am no fool; she is immensely popular here, and it is likely that this will cost me somehow in the future: that's life.

Fourth, she has hated me since back in 1996, when I was one of the 100 or so people who rallied to support the City Librarian against Sarah's attempt at censorship.

Fifth, I looked around and realized that everybody else was afraid to say anything because they were somehow vulnerable.


I am not a statistician. I developed the numbers for the increase in spending & taxation 2 years ago (when Palin was running for Governor) from information supplied to me by the Finance Director of the City of Wasilla, and I can't recall exactly what I adjusted for: did I adjust for inflation? for population increases? Right now, it is impossible for a private person to get any info out of City Hall--they are swamped. So I can't verify my numbers.

You may have noticed that there are various numbers circulating for the population of Wasilla, ranging from my "about 5,000", up to 9,000. The day Palin's selection was announced a city official told me that the current population is about 7,000. The official 2000 census count was 5,460. I have used about 5,000 because Palin was Mayor from 1996 to 2002, and the city was growing rapidly in the mid-90's.

Anne Kilkenny
August 31, 2008

Monday, September 1, 2008

Calling all Tysabri Patients - Informal Project Underway

Hi All,

I'm approaching all patients who use Tysabri to help me with a little project. 

I'd like to collect some basic information regarding the costs associated with Tysabri infusions and the amounts which are actually paid for those infusions. These are the things I'm interested in learning.

What is the original amount billed to your insurance company (or yourself) for:

a) Infusion location/services

b) Tysabri medication

What is the amount which your insurance company allows to be charged (paid) for:

a) Infusion location/services

b) Tysabri medication

What is your actual co-pay (out-of-pocket costs) required for:

a) Infusion location/services

b) Tysabri medication

Where do you receive your infusions?

Neurologist office, Stand-alone Infusion Center, or Hospital Facility

In which state to you receive your infusions?

To answer the first three questions you will need to locate a recent EOB (Explanation of Benefits) which you should have received from your insurance company. The information should be found on that form.

I thank you so much for helping me with this informal project. Please leave a comment or email me directly.

Thanks so much. I look forward to your responses.