MS Blogger Roadtrip

Tomorrow, I'm hitting the road.

Headed somewhere north (location undisclosed, hehe) to meet some MS bloggers and fellow chatroom friends. The warning that photos may be taken and distributed has already been given. (Perhaps even a video or two if folks cooperate, right Jen?)


So I'll actually have a day away from the laptop. Yikes.....

OH NO!!! NOT SEPARATION FROM THE COMPUTER!

Now to go charge my camera's battery so that there are no unexpected surprises. Time to download whatever is saved on the disk to allow maximum space to film.

It's going to be fun. There will be reports later. I promise.

Disclosure: Patients, PR, and Participation

Who am I? Who are you?

Choosing to disclose or discuss your health online is a significant decision. When you do decided to connect online, some may prefer to use screen names and pseudonyms when participating in community forums. Or some folks such as myself have used our full name from the very beginning of their blogs existence.

I do not blanketly recommend one approach over the other. It truly depends upon your circumstances and comfort level when discussing personal aspects of your health and day-to-day life. I've known several bloggers who approach this issue either way, and at least one who dumped her pseudonym for her real name after a short period of time.

Patient Advocacy

One thing for which I am glad to have used my real name from the very beginning is that I have been provided opportunities to speak up as a patient advocate. I hope that from everything I learn from others, and myself, helps me to better advocate for the needs of patients everywhere.

I never really considered myself a writer. In fact math and music have always been my thing. But I have discovered that I enjoy connecting with people, finding and presenting information in an easier-to-digest format, and being asked to advise how companies or organizations can better serve the needs of individuals and patients alike.

Without using my real name, I doubt that others would find me as approachable and reliable. I have continued to be open and I do believe that this allows others to feel comfortable contacting me. Whether it is to ask for advice on a specific problem, to connect with someone else who shares your same diagnoses, to make a request, or to simply say thank you, I appreciate the emails I find on regular basis.

Pitches and Junk Mail

However, besides the issue of discussing items of a personal nature, there may be a separate consideration. If you blog, and that blog (or rather the blogger's email) finds itself on a mailing list of blogs or websites related to health (or a participate disease such as multiple sclerosis), you just might find pitches within your email box regarding press releases, new products, specific political issues, upcoming webinars, etc., etc. The list goes on and on.

Since my blog has previously been a finalist in the Best Patient Blog competition hosted by MedGadget each year (although I only received 44 votes), I am on such emailing lists. I've learned to ignore many of these messages but sometimes the PR companies (or product companies) are persistent and send follow-up emails.

Well, this morning a new thing happened. Instead of a predictable follow-up email from a company, I received a phone call.

Yes, that's right - an actual phone call to my HOME!!

Talk about being shocked. Sorry, but EHR (electronic health records) and their use in clinical trials is a bit outside of the scope of Brass and Ivory.

Real Opportunities

Then, I receive a nice email from a PR company who is representing Wendy Booker. Well, actually, they represent Teva based upon previous email contact regarding the 15-year trial data on Copaxone I had received from this same PR company. Wendy is "member of Team Copaxone and Teva Neurosciences is a proud supporter of Wendy's adventures."

If you don't recall, Wendy is the real-life mountain climber who attempted Everest last year but due to weather and health couldn't complete the climb. Wendy has MS. I responded to this email and plan to connect with Wendy on some level in the month to come. She actually has a blog, too....who knew?

I have no problem helping to promote Wendy's activities, especially since they go beyond the representation or interest of a single company and I do happen to find her activities and story inspirational.

On a personal level, I have no connection to Teva since I'm no longer using Copaxone (or any official MS drug at the moment). But I will maintain that my experience with the assistance program leaves much to be desired (and I'm being nice there).

What's next?

I will continue to do what I do - writing online about MS, connecting with patients, helping them to connect with each other, thinking of ways online communities benefit patients, and simply being me.

That's what disclosure means to me. And in the spirit of disclosure and to encourage participation, this blog post was inspired by Sara's prompt for next weeks Patients for a Moment blog carnival. Well, that prompt and a mid-morning phone call which came out of the blue.

Nonsense Updates

I really should write a real post, but instead I'm just going to give some brief updates because I've.....

• just completed writing five articles for HealthCentral (mostly research intensive!) and I'm out of unique ideas for the moment.
• learned much more than I ever planned about the various biologic medications prescribed for moderate to severe rheumatoid arthritis.
• weighed myself this morning and discovered that I'm officially 18.7 pounds lighter than I was on January 3, 2010. (this is 30 lbs less than in Feb 2009.)
  
• started to feel incremental changes in how clothes fit. Watch for a rant about non-fitting (once-fitting) expensive bras sometime in the next month or so.
• decided I need to take a nap, or go play some online poker on Facebook.
• got to stop grinding my teeth, which happens when I read and research too much on the computer.
• got some little kitties who are either hungry or simply want some attention.
  

Talk to you all later!!

Carnival of MS Bloggers #58

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

Life with Multiple Sclerosis

The Perfect Ending!
by Paula of MS Scars 2 Stars

My report on my first time Dahn Yoga class experience is almost at the end. But I did promise to be candid in my experience and express my thoughts about the event, and I want to try to convey the support that the other participants gave to help each other. This was very clear to me when I attempted to get off the floor, but more about that later. I was of course unable to stand on my own and I was sitting in the middle of the floor. So with the help of my husband and others I was pulled to the nearest wall for support.

As I sat with my “back against the wall” I thought to myself; that is what the phrase means, “Got your back against the wall.” It was very supportive and solidly reassuring, although I knew I wasn’t going anywhere without help. Then strangely, everyone else sat down on the floor in a circle around me. We were asked if we would like some hot tea by our instructor. After serving us all a cup of tea, she sat on the floor and giving each person her attention asked each of us individually “How did you feel about the exercises?” How has the routine helped you? Everyone shared their thoughts in a group therapy style atmosphere quietly sharing their accomplishments. After, the tea and sharing was finished everyone was ready to leave the session.

Now it was time for me to stand up, everyone offered eagerly to assist me. But the smallest lady in the class affirmed she could help me stand very confidently. I thought, sure this attempt would be human folly. After all I had warned them that they would need a crane to get me off the floor. But, she looked me over and asked if I was ready, and before I could reply with “I don’t think you can…” I was standing. That was as big of a highlight to my day as getting on the floor. I am by no means recommending this be tried by everyone because, she later stated that she had worked in a hospital and had some formal training and experience with people who have trouble walking and standing.

The class was over and I felt great, lots of energy but relaxed!

I'm a ScatterBrain by Lorraine

Some things you see with bad vision are funny or
creepy, like a rubberband that looks like a cockroach.

Today everything seems to be seen through a
screen of fine silk, a pale green. sheer and almost white.
And then there are almost not-there
pale pink batik blotches all over everything, do you see it?

I can almost remember this scarf,
ancient and frail, the green & pink so faded as to be
almost the same, and bouncing around when I look away.
I think that scarf belonged to Lee's grandmother,
when they
went to live in a home, a Home, they left behind a life

went to live in a home, a Home, they left behind a lifetime's worth of
of junk that was unworthy of the move and the limited
space at the new Home. We went one morning (after
AmPm, or what was the other one that opened after
Laight Again closed for the morning? '

We had been out all night, not drinking 'cause Lee didn't
like the way I acted when I drank, funny to everyone
and

slutty. This was fine, we were both a hilarious buddy
road-trip movie,
buncing from set to set. So we arrived at the
grandparents old
apartment
to pick through all their crazy wild stuff. The grandmother
seemed to have been a flapper, with these tiny-size
delicate-brazen heavy silk with beads beading all
beads beading all
up & down, and long bead-string fringes. Lee took all
the tiny sexy women's stuff, and I took one frail
scarf of hers, the rest the old-man stuff,
green & gold seersucker,
legs barely more than shorts.
now I am seeing everything through a shadow of this
disintegrating scarf, too delicate to survive except burned
just slightly into my retinas forever.

The Grandfather also left a stunning pair of huge swim
trunks, I bound them up with a studded belt, just the
skinny knees and then the cowboy boots. We were
such a beautiful pair, really too bad I didn't want to be
in love like that, her girlfriend, and she always knew
"I" would leave "her" for some man as I did almost every
night, as she did even more,
her plans of lesbionics forgotten
for any gaunt-faced guy, who, even better, if he looked
like a junkie, the jaw dropping down like that can really
make those cheekbones shine.
She feared I would leave her to have kids,
with my wide hips & like my mom had done,
get pregnant and get married in the tradition of....

But years later Lee came back to town with her baby girl,
and her
husband waiting at home in San Fransisco
at his blotter-crazy museum and whatever family furniture
or knickknacks that would accumulate in the gravity of
my gone, gone Lee.

I got married too, but it was imaginary. But
everyone saw we were so close, and we had
a wedding so beautiful in the huge snowflakes outside,

and three professional photographers taking even 3Dimensional
shots.
a wedding so beautiful in the huge snowflakes outside,

These giant flakes could also still be blurring
everything
I look at, like if the flakes would melt on my open eyes,
there would be tiny searing flashes of white that was
almost
pink,
then flickering to almost green, but really so
confusing in that almost-there way, I really can't see
anything through the invisible batik blotches.


TURNS OUT--
I was telling this story to Charlie,
or some part of it,

and he revealed the source of my confusion, this

horrible odyssey that ended with Spackle run outside
and lost in the hall, of course I was exhausted, and not
used to wielding the walker and blocking the cat-bolt
at the same time, and so tired after falling in 14th street
barely catching myself with my finger tips on the honking
dead-stop cab. And staying up til 7 am and waking up
at only 8, and so tired still. He explained that all this
happened in real life
but over nearly three days without sleeping....
not just in the single day that I was trying to
create for myself,
piecing all the memories together best I could into ONE day
and how awful my made-up memory of that day was.

Of course, Charlie had claimed Spackle and she was fine,
Zoey had found her in the hall, a beautiful angel
to sweep up my pit-cat, big shouldered but trembly.

Spack gave Charlie the full body fluff when she bolted up
the stairs and into our embarrassing mess. I guess
Lorenzo saw all the crap everywhere, but it looks
right now likeI am typing on the face of this page, and the BG image
is bouncing from the contrast of the pink & green,
bouncing just fast enough to obscure everything
I have written here.

note: 05/08/09 seems story could end HERE
if not sooner

EMAIL TO FRIEND:

Hi,
your letter ends perfectly "g'night." I'm so tired and
having trouble piecing the day together,
How did I go to the grocery twice?
I must have forgotten something important, I was
pre-occupied with scones all day.
I know, enough with the damn
scones, they are tasteless blobs
of overcooked dough. The best.

Today I stopped in the coffee shop to sniff the forbidden
beans.
They had a misshaped lump labeled "scone,"
and it had an odd greyish shellac, like some stale glaze
that was reverting
to powdered sugar right before my eyes.

No wonder I fell in the street, but that was yesterday now.

And then there are almost not-there
pale pink batik blotches all over everything, do you see it?



This concludes the 58th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 8, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 6, 2010.
Thank you.

Comments for this post.

Multiple Sclerosis on Law & Order

Did you happen to see Law & Order: Special Victims Unit last night? I did.

The main character who was victimized (raped and abused) was a 41-year old black woman living with chronic progressive multiple sclerosis. It was mentioned that she had a very aggressive form of the disease.

In the show, she was not only wheelchair bound but she was a quadriplegic who couldn't speak nor apparently move her mouth even. She could blink. One for yes; two for no. The characterization reminded me of "locked in syndrome." which can be seen in ALS (amyotropic lateral sclerosis or Lou Gerig's Disease) patients.

To make the story more interesting, and tragic, the woman with MS had been a famous opera singer. Beautiful, successful, courageous. Her sister, who had also become her caregiver, was the longtime jealous sibling who now took out her frustrations by beating her paralyzed sister. Abuse by the hands of caregivers is apparently not uncommon according to the portrayal in this episode, but the sister is forgiven in the end by the MS patient while power-of-attorney is transferred to the nephew.

One bit of evidence which was used in the conviction of the serial rapist (who was the driver for the disabled bus service in the area) was fingerprints on the woman's adult diaper. Never mind that the woman most likely had a catheter in place to catch her urine, the absence of the diaper was the indication for medical professionals to check for signs of sexual abuse.

Although this woman was unable to move, unable to speak, unable to use her operatic voice to communicate, it turns out that she could move the index finger on her right hand. She used it to caress her nephew's face in one scene and later she used it to identify her rapist in the courtroom.

We are nearing the end of Multiple Sclerosis Education and Awareness Month here in March. I wonder if the timing of this episode of Law & Order was meant to coincide or if this was pure coincidence. Either way, I wonder what you think.

Please watch the synopsis video below and answer a few questions:



Was the portrayal of a highly aggressive case of chronic progressive MS helpful in spreading awareness of the disease, or hurtful in characterizing MS patients as invalids?

In our country, we know that cancer can kill and bo-koos of money is donated for research. Do you think that heightened public awareness of the potential devastating effects of the disease might lead to more dollars donated towards research?

Or does this portrayal simply spread fear among those who might have a loved one newly diagnosed with MS, or for the patient himself who faces the vast unknown of the future?

Would it have been helpful to have had a minor character in the episode - someone who was mobile, employed, non-disabled, and for all practical purposes completely "normal" - reveal that he/she also had multiple sclerosis for x number of years? Would this have given a better picture of the wide-ranging possible outcomes?

What are your thoughts? Please respond in the comments below.

P.S. Often Law & Order: Special Victims Unit includes a public service announcement as a postlogue. This would have been a perfect opportunity for the National MS Society to coordinate with the writers on the show to briefly (in 30-45 seconds) give a rundown on MS in this country. And an appropriate time to help gear up for all of the MS Walks which are about to take place all across the country.

Welcome MS Bloggers to the Community

• MS Scars 2 Stars by Paula

Hello, I am Paula, your helper, and I will be sharing my journey with you, as we both discover how to turn our MS Scars into Stars. I was diagnosed with Multiple Sclerosis in 1989. That was the biggest day of my life and the most frightening. Although I did not know what Multiple Sclerosis was I knew from the concerned look on the doctors' face it was not good. And as so many of us when we get a diagnosis we sit on the edge of our seat waiting for the plan of treatment to make it all better. But, much to my surprise, there was no cure for my illness. This wasn't a cold or flue, it wasn't going away next week or like chicken pox leave a scar that would fade away in time. This was permanent and it was going to be with me the rest of my life in some form or another. That was a shock, to put it mildly.

So, here I am today some 20 years later. I can tell you that MS has been my sometimes very cruel constant companion. However, I have learned ways to live with MS, even as my physical condition changes. I am not just existing, but living with MS triumphantly turning my "MS Scars Into Stars!"

• The Cure for MS by George

So today is day +58. Nearly two months since my transplant and closing rapidly on the 60 day mark (which some would arugue is the most critical recovery period prone to infections). Total recovery of my immune system will stretch out to a year (I will explain further later in the posting), but it can be argued that the initial most critical time has just about passed. The next most important time to stay alert is until six months out. And then the last phase out to one year. After that (and some chilhood immunizations) I should be home free in worrying about possible infections.

As I had mentioned before, I'm glad to be back at home with my wife and son. Seven weeks away from Riki was a long time. In fact, of all the discomfort of the procedure that I had to endure, not seeing my son for seven weeks was the hardest.

• Breast Cancer, MS, Thyroid, or Fibro? by Khiba

Not a whole lot happening this week. Lots of flowers blooming since Spring has sprung. The magnolia tree is about finished and the Texas Mt. Laurel with its grape bubble gum smelling flowers is in full bloom. Blue Bonnets are blooming as well. Gorgeous. Louisiana Iris are next with the Indian Hawthorn. Am taking a ton of photos. Most of them are posted on my facebook page.

Gardening in the sun is probably my highlight. Planted out my herb garden with Parsley, Sage, Rosemary and Thyme.. hmmm sounds like a song, if you are old enough to remember it. :)

Also planted dill, fennel, basil, Russian tarragon, and a few hot peppers. I grow and dry the hot peppers then grind them into powder and use in Mexican food dishes and as a counter irritant in hot tea for sore throats. Along with a little ginger to cool the heat.

• My Liberation Adventure by Lucky Lady

If all that the Liberation treatment does is STOP my MS from progressing, I will be the most grateful person on earth. If it gives my body the opportunity to heal in ways small or large, I will have won the lottery. Thank you Dr. Zamboni for giving me hope, and Drs Tornatore and Neville for giving me the opportunity to make my hope a reality. A little background: dx RR in 1990, only residual complaint from initial exacerbation was fatigue until 1999 2nd exacerbation. Beginning in 2000: 4 yr Avonex, 2 yr Rebif, LOTS of 'roids, 3 yr Ty, 6 mo. Zenapax. Liberation 3/3/10! At Lib EDSS 6.0. biggest probs: fatigue,spasticity in legs, balance, walking. Use cane out of the house, Segway for longer trips- like to the school bus stop!

Meaning of Health Care Reform Passed

I just wanted to share a couple of blog posts from bloggers I read and respect regarding the Health Care Reform bill which was voted upon last night.

Rearranging Chairs

by Dr.Rob of Musings of a Distractible Mind

I have been asked by patients, readers, family members, and by fellow bloggers what I think about the bill passed by the House of Regurgitants Representatives yesterday. I resent this. I have tried hard to remain neutral as possible, finding equal cause to point and sneer at both conservatives and liberals. It’s much more fun to watch the kids fight than it is to figure out which one is to blame.

But given the enormous pressure put on me by these people, as well as threatening phone calls from Oprah and Dr. Oz, I will give my “radical moderate” view of the HC bill. My perspective is, of course, that of a primary care physician who will deal with the aftermath of this in a way very few talking heads on TV can understand. The business of HC is my business, literally. So, reluctantly, I take leave of the critic’s chair and take on the position where I will be a target for any rotten fruit thrown.

1. It’s not Armageddon.

We are all still alive and breathing, and will continue to do so after this law is passed and signed. The bill does not change things as radically as the shrill voices on the right suggest. It does not constitute a government takeover of HC, nor does it seem to extend any government programs by a whole lot. It is really not about HC at all, but instead about health insurance.

The goal of getting more people insured is a good one. Our system clearly (from my perspective) makes my services unaffordable – especially if you consider what people pay for procedures and medications I order. The lack of affordable insurance does harm people; I see it every day. The system is broken and needs fixing. Anyone who says otherwise needs to get a urine drug screen ASAP and then seek professional help.

Beware of the fear-mongers who make this out to be the “pro-death panel” legislation. It’s really not that bad.

2. It’s not Nirvana.

It’s actually more like the Foo Fighters…no wait, that’s another blog post.

There are folks on the Left who think that we are entering a golden age because of this. Some suggest this is the “Waterloo for the Republicans.” No, this bill is simply a rearrangement of how money is being spent, not a fount of blessings to those in need. Some people will benefit from this – especially those with no insurance – but most people won’t see a whole bunch of change from it.

This bill addresses the problem of the uninsured, but does not deal with the much more important issue of cost. If anything, it may worsen the problem that is actually at the core of the troubles: out of control spending. Figuring out how things are going to be paid without controlling what is being paid for is like rearranging chairs on the Titanic. The reason people cannot afford insurance is not because there are enough insurance options, it is because of the incredible amount of waste in the system. Agreeing to cover more with insurance without controlling cost will make the situation worse, not better.

3. The process was a national embarrassment.

The debate in DC did not seem to be about people getting the care they need; it seemed to be about which side would win. The lack of bipartisanship is a condemnation of both sides, an indication that power is more important to our representatives than is representation. Why didn’t the Democrats agree to tort reform (which nearly everyone supports)? Why couldn’t the Republicans concede that having people with no insurance is a problem the government should address?

We have a terrible situation in our country: a HC system that is out of control in its cost and that will bankrupt us if nothing is done. Yet what this difficulty has won us is not a national resolve to fix this problem, it is an increase in the partisan screaming and a worsened environment to effect real and beneficial change.

To me, the debate turned debacle is a very good argument for term-limits for members of congress.

4. It missed the point.

The real problem in healthcare, again, is not who is paying. The real problem is that it costs far too much. We are not in a crisis because of insurance; we are in a crisis because of what is being paid for by insurance. For legislation to have a real chance for fixing this problem, it must find a way to control spending.

The problem of health insurance is far easier than that of cost. Here’s why I think cost-control is going to be an even harder thing to tackle:

• There are industries making billions of dollars off of the inefficiency and waste in HC (see my post about the Sea Creatures). Devices that don’t really help people, and specialty procedures that are unproven are paid for while primary care gets the shaft. People like shiny technology and legislators have a hard time saying “no” to it – especially with the lobbyist dollars that will protect this waste-eating industry. It’s boring to promote primary care and doesn’t play well to the constituents.
• We don’t have the IT to do it. Any attempt at cost control will fail without good health IT. Doctors control a huge percentage of HC costs, yet most are operating blindly. We rely on the word of the patient for what happens in other HC settings. If you are going to expect physicians to make prudent medical decisions and eliminate waste, you must give them adequate information. Unfortunately, the current push for EMR is not about delivering information to physicians, but instead about letting doctors document more efficiently. Use IT to inform, not conform. Use IT to enable docs instead of burdening them more.
• “Rationing.” Any control of cost will be about denying care. I believe that denying care that harms patients is a good thing to do, as is suggesting cheaper alternatives if they are equal in benefit. Patients are angry when they can’t get Nexium covered by the insurance company, but OTC Prilosec is just as good for them. Patients are angry when they can’t get an MRI for their back pain when it is really not appropriate for 98% of back pain sufferers. People don’t want to be denied. Americans want an all-you-can-eat buffet of medical care. Unfortunately, any change for the positive will inevitably involve some sacrifice.

So, what do I think about the legislation? I honestly don’t think it’s that big of a deal. I think it’s good that something is being done about those without insurance, but I worry that nobody is checking the balance on the credit card. I like the arrangement of chairs on the deck, but perhaps the hole in the boat merits a little consideration.

Immediate Provisions of Health Care Reform

by Shadowfax of Moving Meat

One of the political liabilities of the HCR bill is that the most important elements -- the insurance exchanges, subsidized plans, and the expansion of Medicaid -- do not go into effect for several years, indeed until after the next presidential election. This was, lamentably, a gimmick Congress used to stay beneath an arbitrary cost ceiling imposed by President Obama. But it is what it is. So what is in the short-term horizon for health care? What effects will be seen immediately?

Shamelessly borrowing from a note that Speaker Pelosi (a close personal friend) sent me last night, here are some of the key provisions that go into effect within the next 90 days, 6 months, or year:

• SMALL BUSINESS TAX CREDITS— Tax credits of up to 35 percent of premiums will be immediately available to firms that choose to offer coverage. (Beginning in 2014, the small business tax credits will cover 50 percent of premiums.)
• BEGINS TO CLOSE THE MEDICARE PART D DONUT HOLE—Provides a $250 rebate to Medicare beneficiaries who hit the donut hole in 2010. Completely closes the donut hole by 2020.

Some much needed investments in Primary Care:

• COMMUNITY HEALTH CENTERS—Increases funding for Community Health Centers to allow for nearly a doubling of the number of patients seen by the centers over the next 5 years. Effective beginning in fiscal year 2010.
• INCREASING NUMBER OF PRIMARY CARE DOCTORS—Provides new investment in training programs to increase the number of primary care doctors, nurses, and public health professionals. Effective beginning in fiscal year 2010.
• INCREASING REIMBURSEMENT FOR PRIMARY CARE SERVICES—Creates a 10% bonus for primary care services provided under medicare.
  

Some of the insurance regulatory reforms:

• ENDS RESCISSIONS—Bans health plans from dropping people from coverage when they get sick.
• NO DISCRIMINATON AGAINST CHILDREN WITH PRE‐EXISTING CONDITIONS—Prohibits health plans from denying coverage to children with pre‐existing conditions. Beginning in 2014, this prohibition would apply to all persons.
• BANS LIFETIME LIMITS ON COVERAGE—Prohibits health plans from placing lifetime caps on coverage.
• BANS RESTRICTIVE ANNUAL LIMITS ON COVERAGE—Tightly restricts new plans’ use of annual limits to ensure access to needed care.
• FREE PREVENTIVE CARE UNDER NEW PRIVATE PLANS—Requires new private plans to cover preventive services with no co‐payments and with preventive services being exempt from deductibles.
• NEW, INDEPENDENT APPEALS PROCESS—Ensures consumers in new plans have access to an effective internal and external appeals process to appeal decisions by their health insurance plan.
• ENSURING VALUE FOR PREMIUM PAYMENTS—Requires plans in the individual and small group market to spend 80 percent of premium dollars on medical services, and plans in the large group market to spend 85 percent. Insurers that do not meet these thresholds must provide rebates to policyholders.
• IMMEDIATE HELP FOR THE UNINSURED UNTIL EXCHANGE IS AVAILABLE (INTERIM HIGH‐RISK POOL)— Provides immediate access to insurance for Americans who are uninsured because of a pre‐existing condition ‐ through a temporary high‐risk pool.
• EXTENDS COVERAGE FOR YOUNG PEOPLE UP TO 26TH BIRTHDAY THROUGH PARENTS’ INSURANCE – Requires health plans to allow young people up to their 26th birthday to remain on their parents’ insurance policy, at the parents’ choice.
• PROHIBITING DISCRIMINATION BASED ON SALARY—Prohibits new group health plans from establishing any eligibility rules for health care coverage that have the effect of discriminating in favor of higher wage employees.
  

sFurther, despite the disingenuous rhetoric of Rep Paul Ryan, this bill does not in fact cook the books. The funding is over ten years but the benefits are over six -- that sounds damning, but this graph shows that in fact the revenue collections and offsets rise very much in lockstep with the new expenditures over the next decade:

There's a little pre-paying of spending there, but it's small, and frankly it makes sense to book the revenues before you pay out the benefits, at least to some degree. Remember, as well, that the deficit savings are projected to increase in the subsequent years, too.

Overall, this is pretty good bang for the buck in the initial years. I'd still like to see the exchanges start up immediately, but the interim high-risk pools are a nice start (are they subsidized? I'm not sure). It will definitely give the Dems some good talking points leading up to November, and hopefully will start giving consumers some needed relief.

Calling all MS-related Bloggers to Answer Survey Questions

I received a request from the National MS Society (US) to encourage as many MS-related bloggers as possible to respond to a survey regarding finding information online. Within the fall edition of the magazine Momentum will be an article - "Multiple Sclerosis: Surviving the Information Age" (tentative title).

Short synopsis: The Internet offers unprecedented amounts of information. It’s a boon and a minefield both. How are people with MS managing it? We’ll ask some MS Webheads and some experts on health information about facts, rumor, opinion, and challenges to received wisdom. We’ll also explore how people stay calm when faced with too much information.

The 10-question survey is meant specifically for bloggers but is not limited to those in the US. If I have your email, you received this same request. I do not have emails for every MS bloggers (not even close), so I ask that you pass this request on....perhaps posting it on your blog.

The NMSS is hoping to get as many responses within the next week as possible.

Here is the address for the survey:

http://www.surveymonkey.com/s/MSblog

Thank you!!

Lisa Emrich

Talking to Your Doctor

Going to the doctor takes time, however you do not have much time actually with the doctor. In order to maximize your 10 minutes, prepare in advance for your visit .

In this video, I talk about the sheet I create before each doctor's visit, using a program such as Word (PC) or Pages (Mac) to create a file and save it for future reference. I will print a copy of my sheet to take with me and for my doctor to keep in my folder.

It helps to streamline the time we have and helps me to think of all my concerns and questions in advance. Also, I will not forget my questions because I've already written them down.

Read this post in its entirety and share your own tips:

MS Awareness Month: Talking to Your Doctor and How to Prepare for Your Appointments

Happy Birthday Little Guys!!

Took me all day (well, at least from 12pm-4pm because I hadn't tried it before) but here's a little photo treat of kitties galore, backed up by some nifty horn playing of the American Horn Quartet.

Happy Birthday! Musette, Pippin, and Oscar
I love you!

What do Cholesterol Numbers Mean?

In the past two weeks, I have had several doctors’ appointments. Just routine visits really, checking in with my primary care doctor, neurologist, and rheumatologist, getting new prescriptions, etc. Part of this process includes routine bloodwork. My neurology nurse practitioner was the first one to call me with the results of that bloodwork. Everything looked pretty good except that my vitamin D level remains low (argh) and my cholesterol levels are high.

My blood results were:

• Total Cholesterol: 205 mg/dL
• HDL (good) Cholesterol: 44 mg/dL
• LDL (bad) Cholesterol: 143 mg/dL
• Triglycerides: 89 mg/dL

In 2006, the respective numbers were 214, 45, 147, and 112. So everything is just a bit lower, but my neurologist would like to see those numbers lower still (except for the "good" cholesterol).

So today, I thought we’d talk about cholesterol. What is it? How is it measured? Is all cholesterol bad? Why is too much cholesterol bad? What can you do to lower your cholesterol?

Read this post in its entirety:

Cholesterol and Obesity: What Do the Numbers Mean?

The Boys, Like Brothers

Looking Outside at the Sunshine:


I really like this picture of Pippin and Oscar looking outside the front door at the big wide world. It was taken just this past week. Thankfully they've gotten along pretty well right from the beginning when Oscar joined our family last year.

On March 18, Pippin and Musette turn two years old. We'll just call this Oscar's birthday as well. I never thought that I would have a house of three cats, but they are lots of fun and good companions. Each has their own personality and preferences.

If you'll notice Oscar's tail in this photo (he's the gray one), it is crooked near the end. I'm fairly positive that he broke his tail at some point during his days living on the street. In fact, the day I brought him inside his tail was bloody, from what I don't know.

A few days ago I was in the kitchen cutting up some roasted chicken for dinner. I took a piece to give to Oscar who is always ready for a treat anytime food is involved. He doesn't always get something, but tuna and chicken are allowed.

When I reached down to offer the piece of chicken, I noticed that he didn't stretch too far to get it. That's when I realized that I was standing partially on his tail!! Neither he nor I knew that I had his tail pinned to the tile. Yikes!!

My foot is numb and I've suspected that his tail might be numb too. Now we know that it must be. I've got to be more careful around him. The other kitties would certainly hiss and hollar if I stepped on them, but Oscar is so quiet and seemingly tough.

I guess I need to go back to watching where my feet go when I move around as I know that I've accidentally walked into Pippin who races me to the kitchen. Basically, I'm not seeing much in my lower right peripheral vision, the side of my body which seems to be increasingly numb lately.

Oscar and me - we slightly disabled creatures - need to watch out for each other, literally, so that we don't cause further damage to our bodies or egos.

Fortunately, my kitties are a rather forgiving bunch. A little blessing indeed as we all look forward to Spring. I'll be looking out the windows this week too.

Roll a Six for Sex?

SEX DICE:

Carnival of MS Bloggers #57

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

Poetry and Life with Multiple Sclerosis

Walking Then and Now
by Judy of Peace Be With You

Walking is routine
for others but not for me.
I wish it were, though.

It used to be so.
I shopped and played like them.
Didn’t give it thought.

Now my walking needs
certain aides and attention.
Preparation, too.

Heidi is a BAMF,
Guest Blog at MSUnderstood

I had a moment the other day, sitting outside the post office, waiting for Glenn. I was doing what I have been doing for a couple of years now; observing. I am mesmerized, quite honestly, and watch others with full mobility just move. The simplistic way in which they walk in, just moving to get from here to there. Barely a thought in their minds. They want to run, they run. They want to jog, they jog. So on, so forth. And I sit here, watching them.

I am drawn to young and old…the young that lock their knees on cue just for the fun of ‘walking funny’. …the old, and their slow and steady shuffle….a couple of adolescent girls that clasp hands and run as fast as they can to the storefront….the teens that are skipping and stomping and kicking as they walk….

It is just surreal to me. Do you know, I honestly cannot remember what it even ‘feels’ like, to hop on one foot? I am unsure how I would even begin to physically do it. Apparently, the lack of ability has caused some sort of amnesia.

Still, fact is, I used to be able to do what they are all doing. I used to do it effortlessly, and with little thought about doing it.

Perhaps before I get into it, I should dish out my MS resume:

1. Cannot walk without assistance. That is just a way of saying I need a fucking arm or a wall in order to keep from falling on my face.
2. Knees and ankles that give out with absolutely zero notice. Keeps going up and down stairs really interesting….also adds fun when I am at the sink trying to brush my teeth.
3. Spasticity…..OMFG. I am forever stiff, have chronic pain and when my legs move to walk….I actually kind of resemble the Tin-Man from the wizard of Oz…sans oil.
4. Numbness. From the waist down. You know, I am not even going to go there. Use your imagination.
5. Weakness and fatigue. Well, I went an entire year of having an active diagnosis of major depressive disorder. MDD, for all of you DSM freaks.
6. Nystagmus…it has a ‘life of the party’ element to it…gather round, and watch my eye bounce.
7. Electric shock sensations, crawling bugs sensations….shit, a whole gamut of sensations that should be foreign to me. When my numb feet touch cold cement, they feel like they are burning. My demented, destroyed and dyslexic little nervous system. Etc, mostly etc.
   

Anyhoo, before this turns into a depressing heap of MS shit, I shall move forward. (moving forward….just makes me laugh)

Ok, so I have dogs…2 dachshunds and a GSD. My dachshund, Rocky, had a disc disease. An irreversible degenerative disc disease. His little vertebrae is basically mineralizing as we speak. He has been paralyzed twice, he recovered both times. Took him a while, but being a stubborn & fearless little badger hound, he did it.

Now, here is my thing: I am here, watching him. (This is when he was paralyzed.) No matter what, he kept going. He didn’t let it stop him. I had a cart made for him, which he hated….he would much rather drag his little legs behind him than have them dangle from the cart. If you met him once, you’d get that. He is a noble & stolid little thing. A whopping 28 lbs of hell. Ok, so he would drag his little lifeless legs through the tall grass after a bug, or if he heard an imaginary sound that would cause him to speed off in a direction barking his head off. He never stopped enjoying his life. He kept his passion. Yes, his dog lust for life.

And I know…he doesn’t have the brain capacity for insight, he isn’t contemplative…he just was spurred forth by pure animal instinct. I know all of that. I am also aware that even while he was dragging himself around over the grass in the yard, my other two dogs never once said ‘hey, rocky…are you disabled? Do you need help? “

They never even noticed. Because it didn’t matter.
If only that were the way for us dumb-ass humans, huh?

Nah. And before anyone allows themselves to read my words as purely negative, or to view me as a complete misanthrope…keep an open mind. I am a realist. And reality isn’t all sunshine beams shining out your ass. And just for the record, not everyone wants you to shoot sunshine beams up into their ass either. Sometimes they just want to bitch and be heard and be done with it. Just like any other (based on assumption) chronic illness, there isn’t going to be a ‘happy day’ every day. That said, there also isn’t going to be a negative day every day. (*except for the Pollyanna’s and the total assholes….they are either all of this or all of that)

My MS has done a lot for me. In so many ways. It has given me excuse slip after excuse slip. It has given me a pity card. It has lacquered me with a thick coat of guilt that I can’t seem to shake off me, no matter how hard I try. It has given me people that do not know how to act around me, or has caused them to sound like a moron because they don’t know what to say. It has caused them to be ironic, and apologetic, and I seem to inspire the inner-life coach in a lot of folks.

The ones that say,:
‘well, it could be worse’. yeah, no shit.
‘things will get better’….really?
‘you have to keep positive’….mmmmm, that is one of my favorites.
‘everything happens for a reason’. great. So, basically some divine providence has some serous fucking explaining to do. So I then ponder my life, trying to mull over the profundity of my ‘sins’.

Nah, it is just something for them to say. We hold onto sentiment, warm fuzzies make us feel better. A positive attitude doesn’t make me walk any better. In fact, I am not getting any better.

But, all of this makes me a negative asshole. Then, after my reality crashes into someone’s sunshine filled daydream, I am the one comforting them.

I am not negative. I laugh when I think shit is funny. I read, paint and play with my dog. I gossip with my sister and we bitch about life. I am a college student. I have been in a relationship with Glenn since the late 90’s. I am passionate about art and music. I have beliefs, and hopes and dreams.

And, I have MS.

Remembering to Breathe
by Judy of Peace Be With You

I stare at the top
of my Peace Be With You blog,
needing its message.

The calm rolling waves
ease onto the sandy shore;
blue and white on tan.

The movement helps me
remember to breathe again
and let go of fear.

"'Ed World' slowly begins to get a crack"
by Debbie of MS and ME

Some babies sleep all the time and love their bouncer. G. was NOT one of those babies! I would fondly refer to him as my “high maintenance little man”. He would refuse to be put down; only sleep on me; refuse to go to anyone other his daddy, big sis, or me; and often insisted that we stand and hold him instead of sit and hold him. I think he was older than four months old before both Ed and I got to sit down to eat a meal at the same time, sans baby.

By time G. was six months, I had decided that I wanted another baby, but there was NO way that I was going to wait until he was easier and then start all over again. When I was done with this stage, I wanted to be DONE! Anyway, it’s not like I was a Spring chick and I definitely wasn’t getting any younger. We decided to start trying for baby #2.

About 2 1/2 months later, I ended my shift on the Paramedic unit at 7am, rolled up my sleeping bag, put it in my locker, probably forgot and left my gear on the unit, and left the fire station bound for vacation at the beach. I was to return to duty in a week and a half, but as it turns out that was not meant to be.

The second day at the beach, I began to feel as if I had to pull myself up the stairs in the condo we had rented. I worked myself up to being able to mention my concerns to Ed, but as he could not see me having any problems, he blew me off.

The next morning I went out to get donuts from The Fractured Prune.

(This little aside is not MS related, but I must say that some things just restore your faith on the kindness of strangers, and this trip was one of them. When I got to the store, I went in, got my free sample, YUM, and picked out my dozen donuts. Only then did I notice the cash only sign. Not only did I not have any cash on me, but I also hadn’t brought my cell phone to call Ed and tell him to bring me cash. As I told the store keeper that I would have to come back, she told me to just take them and come back and pay her later. Who does that in today’s day and age? I thanked her profusely and made sure to come back as soon as we could. I hope this aside wasn’t to long for you, but I think we all need a feel good story every now and then.)

Once I got back to our building and was on my way back up the elevator, I suddenly felt an urgent need to pee. Funny, I hadn’t felt like I needed to go to the bathroom a minute ago. Well I started to do the well known “PeePee dance,” but it was not to be. I opened the condo door, threw the donuts on the table, opened the bathroom door, and I lost it. Somehow I managed to escape without anyone noticing what happened, but I was starting to get scared. I sneaked off to the drug store and bought some Depends, not something I ever thought I would be doing at age 34, and refused to go anywhere that would leave me out of sight of a bathroom. This sudden urgency was not a one time thing.

Meanwhile, I started to feel like I was limping and dragging my right foot, but I was the only one who could tell. It just kept getting worse, and two days later, I told Ed that we needed to find internet access so I could contact my neurologist. Sitting in a local McDonalds, I called the neurologist’s secretary. She told me that there was nothing they could do for me there, and that I would have to wait about FOUR MONTHS for an appointment. Since I had not been into the office in four years, they were planning to treat me as a new patient, essentially penalizing me for not having relapses. After arguing with her for a while, she told me to call her when we got back in the area.

I then told Ed that I should call work and tell them I wouldn’t be in for my next shift. He looked up in complete surprise and said “Is it that bad”. I said “Yes it’s that bad! Why do you think I’m doing all this?”. He truly had no clue what was really going on. I guess that’s part of the unfairness of MS, huh? It’s a silent disease that only the sufferer can hear or truly know.

The next day while shopping, my walking got bad enough that I said I was done. My family could finally see the limp, and I know longer felt safe driving a car. I, who would never go to the ER unless I was the delivering paramedic, or I had an open, compound, displaced fracture of the wrist without a palpable pulse, decided it was time to go to an ER. We found the closest hospital, and off we went. The ER was almost empty, so we were seen fairly quickly. In triage, I explained my symptoms and history, and also mentioned that I might be pregnant since we had been trying. They moved me to a room and started giving me a dose of steroids. Then the doctor returned to tell me that indeed I was pregnant. What should have been some of the happiest words I could have heard were about to turn my life into a nightmare. That’s a story for next time.

May You …
by Judy of Peace Be With You

Have light shine away
the darkness of your valley
so you can reach home.

Meet along the way
strangers who treat you kindly
and with a full smile.

Feel deep in your heart
the warmth of those beside you
who also love you.

This concludes the 57th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on March 25, 2010. 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, March 23, 2010.
Thank you.

Comments for this post.

Going Blind 10 Years Ago

"Ten years ago on this Tuesday in March, I woke up not able to see out of my right eye...."

That's how one version of my story begins. Please watch this 6 minute video in which I speed you through my journey to an MS diagnosis. A journey which took 5-12 years, even if I didn't know that I was on that road at the time.

I started writing about my story on my personal blog some time ago, although I haven't added to it recently. If you'd like to read the longer version which began in college, I recommend starting with "Eyes in the Back of My Head."

Watch a video of me telling my diagnosis story:

MS Awareness Month: My Diagnosis Story - A 10 Year Anniversary

End of Life

At HealthCentral, we are talking about "death and dying" during the month of March in addition to it being MS Education and Awareness Month on MultipleSclerosisCentral.com. Here's my post I wrote for MyRACentral...

Thinking about the end of life, at any age, is not a pleasant situation. We spend so much time talking about how to live well with chronic illness that we often fail to make our desires known in the event that life takes a downturn. We may not have considered how we’d like to be treated, or not treated, in our final days. I have only thought about this because I’ve watched relatives have drastically different experiences.

When my grandmother was dying several years ago, it was difficult for my father and his siblings to have the responsibility of deciding what type of life-saving procedures she may or may not have wanted. Even after she and her doctor had signed a DNR (do not resuscitate) order, it failed to prevent the EMTs from taking her to the hospital after a nervous home health aide panicked and called 9-1-1. This event further prolonged her life and suffering, but it did grant me an opportunity to see her “one last time.”

Read this post in its entirety:

Engage with Grace: Planning for the End of Life with Grace and Dignity

MS Awareness and Big Prescription Bottles

The National MS Society of the United States declares this "MS Awareness Week." You can read more about it on the NMSS website.

In the meantime, I thought that I would share what came in the mail today. A big-o bottle of gabapentin (generic for neurontin), six months worth if I continue to only take 3/day. I think that the pharmacy got some new, larger bottles to play with. Usually my prescription comes in multiple smaller containers. Just thought I'd share this today. :)

Birkie Skiers for Cures and the National MS Society in Wisconsin

As most of you know, I write for HealthCentral.com. In fact, I write for three of their disease-specific websites: MultipleSclerosisCentral, MyRACentral, and MyObesityConnection. In the process, I work with three individual great producers.

Last weekend one of my producers was in Wisconsin participating in the legendary cross country skiing race called the American Birkebeiner. "It’s this crazy long, crazy hard race through the north woods of Wisconsin on nothing but two pieces of fiber glasss," says Sara.

After she returned from the race, she tells me that a good friend of hers was diagnosed with MS a few years ago. Since then she has skied in her friend's honor through Birkie Skiers for Cures and the National Multiple Sclerosis Society.

"This year, I was skiing for you, too! Here’s a pic of me at the end…all smiles!"

Can I just say - WOW!! Nobody has skiied, walked, or biked for me before. Well, except those piano student families who walked WITH me that first year at the MS Walk in 2006. I guess that counts. ;o)

I'm a bit surprised at how touched I was by Sara telling me this. So touched that I didn't know how to respond at first and I just now answered her email.

Last week I visited the HealthCentral main office here in Arlington, VA to give my MS producer some short videos I had taped. They will be posted throughout the month of March and the 1st one made it up on the site yesterday. Here's the 2nd video and post regarding "getting diagnosed with MS." Next week, several of us are telling our diagnosis stories.

While I was at the office, I got to meet face-to-face each of the lovely persons I currently work with and have previously worked for. It's nice to put a face to the person on the other side of the keyboard and computer screen.

This just reinforces that there are real people behind the blogs and screennames. Real people who do great things. I hope that I will always one of those approachable folks who are "real" in discussing their lives and their diseases. Seriously, how can you be anything but honest when talking about MS or RA or even obesity.

It might take me awhile to answer emails (read above) but I do try to respond. Remember, though, that I do have two diseases which can make the brain a bit foggy. If I don't respond, please feel free to email again.

So here's to MS Education & Awareness Month in the United States. I am now aware of the Birkie Skiers for Cures which sounds like a great organization and bunch of folks who have fun while raising money for good causes. This year the National MS Society got hooked up. Go NMSS!!

Vienna Horns Release a New CD

A friend on Facebook linked to the following video on YouTube. This is amazing!

The sound of these horn players (and their horns) makes my heart grow about 2 sizes within my chest. I love it!!

I was not aware of this ensemble and their previous CDs, but my reaction is similar to the one I had when I first heard "The London Horn Sound" CD which came out a decade ago. Enjoy this excerpt:

MS Education and Awareness Month

What would you want to the world to know about MS and its effects on how you live your life?

That is the MS Question of the Week at HealthCentral...

It is March!! National Multiple Sclerosis Education & Awareness Month in the United States.

Of course, we who have MS are aware of our disease on a very personal level every month of the year. Those around us may be aware of MS through witnessing its affect in our lives. But the general public may not be aware nor educated in what MS is and what it can do to those who have it or who care for someone who has it.

The theme which the MS Foundation has chosen this year is "Ready, Set, Shine" and they've challenged us to move outside our "comfort zone." Doesn't have to be far outside the zone; the idea is to challenge yourself and perhaps try something new.

Read this post in its entirety and answer the question:

MS Question of the Week - Awareness!!