Brass and Ivory

Sexuality, Intimacy, and MS

2009-07-14T16:17:00.002-04:00

The physical changes experienced by people who have multiple sclerosis can alter their view of themselves as sexual beings, as well as their perception of the way others view them. The psychological and cultural context in which physical changes occur can adversely affect self-image, mood, sexual and intimate desire, and the ease or difficulty with which persons with MS communicate with their partners.

One of the notions about sexuality that prevails in Western culture is a “goal-oriented” approach to sex. In this approach, the sexual activity is done with the goal of having penile-vaginal intercourse, ultimately leading to orgasm. The sexual behaviors labeled as foreplay, such as erotic conversations, touching, kissing, and genital stimulation, are seen as steps that inevitably lead to intercourse rather than as physically and emotionally satisfying sexual activities in their own right.

This Western view of sexuality leads to spending a great deal of time and energy worrying about the MS-related barriers to intercourse and orgasm (“the goal”) rather than seizing the opportunity to explore physically and emotionally satisfying alternatives to intercourse. The capacity to discover new and fulfilling ways to compensate for sexual limitations requires that couples be able to let go of preconceived notions of what sex should be and focus instead on openly communicating their sexual needs and pleasures without fear of ridicule or embarrassment.

Read this post in its entirety:

Sexuality, Intimacy, and Multiple Sclerosis

The Cost of Chronic Illness

2009-07-13T16:07:00.001-04:00

With the ongoing debate on ways to reform health care, I've been thinking about the routine medical care I receive in a typical year. However, living with multiple sclerosis and rheumatoid arthritis, it is not always easy to know if a particular year is going to be "typical" or not. So I examined exactly what health care services I used in one calendar year. Here is what I found:

I saw the rheumatologist three times during the year since I have routine visits scheduled every four months.
Total charge: $433 - insurance adjustment: $202 = $231
Insurance paid: $176
My copayments: $75

I saw the neurologist (or nurse practitioner) five times during the year. In addition to routine visits scheduled every three to four months, I had two extra visits related to a multiple sclerosis relapse.
Total charge: $1,269 - insurance adjustment: $780 = $489
Insurance paid: $354
My copayments: $125

Rest this post in its entirety:

The Annual Cost of My Chronic Illnesses

Support Creating a National MS Registry

2009-07-11T15:58:00.000-04:00

Ask your Senators and Representative to co-sponsor the National MS and Parkinson's Disease Registries Act (H.R. 1362/S. 1273). The legislation, supported by our Congressional MS Caucus and the Bicameral Congressional Caucus on Parkinson's Disease, would for the first time establish a national coordinated system to collect and analyze data on multiple sclerosis, Parkinson's disease, and other neurological diseases and disorders.

Take Action Today! Click here send an e-mail to your legislators

The National MS and Parkinson's Disease Registries Act (H.R. 1362/S. 1273) calls for establishing separate, permanent, and coordinated MS and Parkinson's disease registries at the Agency for Toxic Substance and Disease Registry (ATSDR) at the Centers for Disease Control and Prevention (CDC) using an incremental, science-based approach. The last national study on incidence and prevalence rates on MS was conducted in 1975 - a lot has changed in 34 years. These registries will help determine incidence and prevalence rates and lay a foundation for better evaluating and understanding MS issues such as geographic clusters, variance in gender ratio, changes in health care practices, and changes in disease burden.

The MS and Parkinson's disease registries may help uncover and inform promising areas of research such as genetic and environmental risk factors and results could be used to provide consistency and coordination in addressing treatment of these and other neurological diseases.

(hattip I'm an MS Activist blog)

NMSS Strategic Response Survey

2009-07-10T16:01:00.002-04:00

The National MS Society is looking for your input.

"We are in the process of gathering information that will help us understand what needs to happen - and change - to help people affected by MS keep moving their lives forward. This data will help guide the Society’s direction for the next five years."

As the NMSS is working to expand their outreach online, here is your opportunity to have your voice heard. Please consider letting them know what you envision.

www.nationalMSsociety.org/srsurvey

The Nap Taker

2009-07-09T17:06:00.003-04:00

The steroid taper finished up this past Sunday, but instead of finding some new energy, I've been caught in a fog of fatigue. Without too much choice in the matter, I've drifted off to the land of comatose and nod for hours during the past three days. As I know many of you have been in the same place far more often than either of us would like, I thought you might enjoy the following poem taken from Falling Up by Shel Silverstein, a well-loved book which sits in the waiting room of my music studio.

The Nap Taker

No--I did not take a nap--
The nap--took--me
Off the bed and out the window
Far beyond the sea,
To a land where sleepy heads
Read only comic books
And lock their naps in iron safes
So that they can't get took.

And soon as I came to that land,
I also came to grief.
The people pointed at me, shouting,
"Where's the nap, you thief?"
They took me to the courthouse.
The judge put on his cap.
He said, "My child, you are on trial
For taking someone's nap.

"Yes, all you selfish children,
You think just of yourselves
And don't care if the nap you take
Belongs to someone else.
It happens that the nap you took
Without a thought or care
Belongs to Bonnie Bowlingbrook,
Who's sitting' cryin' there.

"She hasn't slept in quite some time--
Just see her eyelids flap.
She's tired and drowsy--cranky too,
'Cause guess who took her nap?"
The jury cried, "You're guilty, yes,
You're guilty as can be,
But just return the nap you took
And we might set you free."

"I did not take that nap," I cried.
"I give my solemn vow,
And if I took it by mistake
I do not have it now."
"Oh fiddle-fudge," cried out the judge,
"Your record looks quite sour.
Last night I see you stole a kiss,
Last week you took a shower,

"You beat your eggs, you've whipped your cream,
At work you punched the clock,
You've even killed an hour or two,
We've heard you darn your socks,
We know you shot a basketball,
You've stolen second base,
And we can see you're guilty
From the sleep that's on your face.

"Go lie down on your blanket now
And cry your guilty tears.
I sentence you to one long nap
For ninety million years.
And when the other children see
This nap that never ends,
No child will ever dare to take
Somebody's nap again."

Helpful Kitchen Tools

2009-07-08T10:27:00.001-04:00

With the intent to improve my diet in recent months, I’ve been spending more time in the kitchen. Trust me, I’m no chef, but I can follow a recipe. I even own a Better Homes and Gardens Cookbook.

Even before my rheumatoid arthritis was diagnosed, I had started purchasing things for the kitchen which would prove to be quite useful. These items help when the hands are sore, swollen, and weak, since they require much less effort to hold and use. Even when the hands are feeling strong, they just make things easier to accomplish.

Read this post in its entirety:

Five Kitchen Tools to Make Cooking Easier

More MS-Related Financial Help Available

2009-07-07T22:20:00.002-04:00

In my last MS HealthCentral post, I provided a list of places that may be able to help you with financial assistance for your MS medications. But these are not the only costs associated with MS. In addition to pharmaceutical assistance, there are programs available to address other needs as well. The primary organizations which offer assistance specific for MS-related needs include the National Multiple Sclerosis Society, the Multiple Sclerosis Foundation, and the Multiple Sclerosis Association of America.

Read this post in its entirety:

Financial Assistance for Other MS-Related Needs

A Swing and A Hit for Violinist

2009-07-06T11:00:00.005-04:00

A Swing and A Hit for Violinist
Musician Plays Instrument Crafted From Baseball Bat

By Anne Midgette
Washington Post Staff Writer
Saturday, July 4, 2009

"I just decided, 'Well, let's see if I can make one,' " says Glenn Donnellan, a violinist with the National Symphony Orchestra. "I thought it would be cool to say to the kids, 'Hey, you can make your own.' "

The object in question is an electric violin made out of a baseball bat. And the answer is, Yes, he could.

Just in time for the Fourth of July, Donnellan posted to YouTube a video of himself playing the national anthem on his electric baseball-bat-violin. He didn't necessarily mean the clip for wide circulation. He put it up because a friend with contacts in the Washington Nationals front office wanted to show it to his bosses and ask about having Donnellan play the national anthem for a game. But there are no secrets on YouTube. By Friday, the video had racked up a respectable 1,600-plus views, and some enthusiastic comments. "Totally bat-ass!" one viewer wrote.

Donnellan made his bat-violin when the orchestra was preparing to go to Arkansas this spring for the 19th of its annual American residencies, which offer concerts and outreach programs in areas of the country that may not be well served with classical music. He was looking for an instrument to use in a children's concert; he had done the same program in D.C. with more standard electric fiddles, but he had only borrowed those instruments and couldn't take them on tour.

Not everyone might have come up with his solution, which required hours backstage at the Kennedy Center, using the stagehands' drill press to make holes in a baseball bat. "It's tricky to drill a hole in the handle," he observes. "If you use a small enough bit, it wants to drift." He adds, "You'll see how [the bat-violin] is kind of crude at the bottom."

On the contrary, the video is downright elegant -- both for the instrument, narrow and compact, and for the playing, executed with cool aplomb. It's certainly not your typical classical-music approach to the national anthem. There are overtones of Jimi Hendrix in the reverberant electronic sound, though the arrangement is actually Donnellan's own. (The video appears on YouTube as a "video response" to Hendrix, but Donnellan says that was an accident; new to the site, he randomly clicked a lot of different links when his post first went up.)

Donnellan has been with the NSO since 1997; his violinist wife, Jan Chung, frequently plays with the orchestra, too. (They have two children: Adrian, 8, and Katherine, 6.) On his own time, Donnellan tries his hand at fiddling and experimenting with jazz. "Jamming with a guitarist on 'Hotel California' at the California Congressional offices on the Hill, and with kids playing the Blues in Mississippi were some of the most fun and memorable musical experiences I've had," he writes in a follow-up e-mail. "In terms of playing outside the classical box, I think that if you can feel it, you can play it."

The instrument had immediate resonance in Arkansas. Iván Fischer, the NSO's principal conductor, happened to see Donnellan playing it backstage and immediately had to try it out. Now, Fischer wants one of his own. "I just haven't had time to make one," says Donnellan.

Welcome to the MS Blogging Community

2009-07-05T09:20:00.009-04:00

Chris: My Journey with MS by Christina
For years I've wanted to start a blog about my life, but never felt there was anything to write about. Now there is. This blog will not just be about MS, it will be about my life. The good, the bad, and the hot mess ugly. It will be a way for me to talk about how this diagnosis is a wake up call for me to stop putting life off for tomorrow, because tomorrow I may not be able to walk, make homemade pie crust, crochet, or type out all the things I have floating in my head. I feel more alive today than I have in the entire 24+ years I've been alive. I hope you enjoy my journey.

DA's MS Mumblings by Dabble
I'm a nurse, writer, painter, vaguely creative soul, former pet owner and optimist. I'm also a person with MS. There are a lot of us out there. Coping with Multiple Sclerosis is never easy - this is my cheery account of how MS has given me a wonderful gift....or alternatively, how MS has #%@^!%%!'d up my life.

The Danielle English Mix by Danielle
In 2002, I was diagnosed with MS at the age of 17. The disease and I finished high school together, earned a Bachelor's degree and we're working toward a master's. I have multiple sclerosis. But what does that mean in the age of Web 2.0? That's what I'm trying to figure out. Welcome to the Danielle English Mix.

Healing Through Multiple Sclerosis by Cathy
The most power is held at the edge of things; as day moves into evening, the seemingly instantaneous arrival of an idea, the moment of conception or the delivery of a diagnosis of Multiple Sclerosis. What was before can never be reclaimed and the road ahead is a mystery. There is the scent of dread as well as adventure. The territory is far from static and infused with the specter of grief and the anticipation of a miracle. How can one not be interested in this landscape?

Playing the MS Card by Jenny
I don't feel good. I was driving home from work last night and this wave of exhaustion came over me where I could barely hold my head up. I'm not exaggerating. It took everything I had to make it home from work. This is the first time I have actually contemplated pulling over and calling my husband to come get me. I can't stand feeling like this. It puts me in such a funk. Has this ever happened to anybody else? Whenever I am this tired for any length of time I seem to get sad or depressed. I don't deal with it very well. I have to work on this. It's awful!

Standup4MS: a story of mobility rehabilitation by Laurence
This might not be glossy but I hope it will enrich some experiences... In January this year, I was pleased with what I had achieved even if I had been told that I would have to use a wheelchair for the rest of my life and that nothing could be done. I was also repeatedly advised not to try standing on my own. I had to try this to see if I was getting any stronger. Standing helped keep my spirits up! I had been given a list of exercises, which I modified to fit with the care assistance I received.

This is my life and all that goes with it by Mike
This is for when I have something to say but nobody to say it to. I suffer from MS and Diabetes as well as an insane addiction to coffee. I am who I am and nothing more. I hope you find something here that interests you and if not then let me know what does and I will see what I can do.

Thoughts from my Broken Brain by lunafemme
What I am experiencing is transitory, simply a moment in time. I do not accept this moment as permanent.

Utterly Bloggered by Grace
My thoughts on life, living with Multiple Sclerosis and everything else. Dive in, take what you like and ignore the rest.

Other links of interest:
A Voice for MS

Medicare vs. Medicaid Hell

MS Research Seeks Help

No Time For MS (which has moved from Blogger to Wordpress)

Vitamins, Minerals, Supplements, Diets - Oh My!!!

Carnival of MS Bloggers #39

2009-07-02T08:28:00.001-04:00

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

Honesty, Vision, and Perspective

Orange You Glad I Typed by Kmilyun

Here is one of my favorite orange shots. I took it in 2007. it was one of my first macro shots that captured what my eyes and brain were seeing.

I loved the powder laying there, the pollen, ready to perpetuate the species.

I have always been fond of bright colors. Orange is one of those colors that I can not wear – it makes me look jaundice, as do browns, and yellows.

Noticing the little things, the small details that many pass by, comes naturally to me. I miss being able to hike somewhere and find the little hidden gems. Colorful moss on a rock, rusty old nails along a shore where a town used to thrive, and birds resting after flight.

Sometimes it really pisses me off when other bloggers with MS write about all the cool things they are doing. I get jealous. Then again the MS Societies pamphlets, videos, etc. usually show young, good looking people that relay a positive outtake – good PR? Trying to keep us positive?

I am not so positive about my vision doing wonky things. I hope sometime this summer my eyes will be clear and my balance and legs muscles will allow me to get out and snap some shots. My camera has the fully automatic mode but it just kills me to dumb down and use it.

I had a dream the other night were the orange flowers were turning into the orange logo’s of MS. I woke up thinking how crappy that was. There I was hiking up a hill and every time my lens was focused on the poppies they turned into out of focus MS logos! How suck-o is that??

Finding the Muse by Nadja

I lay in the darkness but sleep eludes me.
A clutter of useless thought crowds my mind,
These worries wash me in discontent.
But there is no need for worry--

I shove aside all concerns and center my mind.
I escape this husk
Travelling through visions of creation
In this state, everything I imagine, I can create.

It comes to me within these visions--
Time is key
Take the time,
I can manifest each thing I imagine

Results become unimportant.
I am adrift in sensory images.
My hands caress this design I have crafted from old things made new
I feel the texture of the fabric beneath my fingers.

I am not troubled by the distance of my vision
I can see now that I will create this thing
It does not matter when
It does not matter how long it takes

Just the existence of each artistic vision
Ensures I will somehow create what I imagine
There are no words to describe it
Behind my closed eyes, it is entirely clear.

I can wait--
I just must remember the things I have fancied,
As I drift toward slumber
They warm and inspire me--

Choosing Our Perspective by Michael

What is perspective? It is more than just how we view everything. Perspective is how we choose to view everything.

Do we really have a choice about our perspective?

We make decisions all day long: what to eat, what to wear, what to do, etc. We are in complete control over those decisions. Yet somehow, we think or have decided that there is a distinction between those seemingly ‘practical’ decisions and the decisions we make about the feelings that we have.

The fact is each and every one of those practical decisions is based on feelings. We even use language that confirms that we have control over these feelings. “What do you feel like eating?” “What do you feel like wearing?” “What do you feel like doing?” At a minimum, we all have to agree that we have control over at least some of our feelings. That leaves us with only one question: why is it that we control some of our feelings and not all of them? The answer is simple. It is because we choose not to.

Aren’t some of our feelings beyond our control?

Choosing not to have control over some feelings, serves some people very well. If we do not have control over something, than how can we possibly be responsible for it? There is a certain logic there, albeit flawed logic. The reason it is flawed is because it is not true: if we agree that we can control at least some of our feelings, then logic says we must also have the ability to choose which feelings we control.

As adults we make decisions all day long that are based on our feelings. The next question is what distinguishes the feelings that we control from the feelings that we do not control? Is it the strength of the feeling? Is it rage? Depression? Euphoria? Whatever the reason is, who determines the controllable feeling from the uncontrollable one. The answer can only by us, ourselves. Yes, it is true and it does happen that sometimes decisions are made for us. But no one other than ourselves can decide how to feel. In other words, we may not be able to control all that happens in our lives, but we are always in control of how we respond. We get to choose our perspective.

Perspective is deciding how we feel.

Only we can make the decision about how we feel. Only we can know the reasons or reasoning behind our decision. It may be that we don’t know the reasons why we feel a particular way. But whether known or not, our perspective is our decision. It includes every moment of our history, every feeling that we have ever had, the sum of all the experiences that brought us to this time and place. Our perspective is our choice and no one else’s.

Do we always exercise control over our perspective? No, because we are still human and still fallible. But knowing that we do have a choice and that we can often do better, may help us in choosing a better perspective.

This concludes the 39th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 16, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 14, 2009.

Thank you.

Comments for this post.

Patients for a Moment is Up!!

2009-07-01T12:51:00.002-04:00

#2 Is Up at Duncan Cross. Do go check it out!!

Love Intimacy and All That Jazz

2009-06-27T13:56:00.003-04:00

All around us we are surrounded by relationships. Our proximity to friends and family, to our activities, to our bodies, even to our minds. Yes, I sometimes think that my relationship with my own brain and body changes with the tide.

Do we always know what is waxing and what is waning? Or must we wait until the time has passed to reflect and analyze? Perhaps I’m just in a reflective mood today.

My multiple sclerosis is of the waxing-waning type. Depending upon which points in time I choose to delineate, I seem better off or worse than another.

Two weeks ago I was demonstrating an MS relapse to the neuro.
Four weeks ago I was treating a suspected UTI.
Six weeks ago it seemed that my RA was flaring up a bit.
Eight weeks ago I noted looking through an increased veil of floaters.
Ten weeks ago I felt great!!

Today, I am mush. Physically, mentally, spiritually. Steroids and MS will do that to you.

At least the raging stage has passed somewhat and I might be sidestepping the weeping stage. Hard to tell just yet. But cry is something which my soul wants to do.

Is it crying for any particular reason or is it crying for a loss? Or maybe for a potential loss in the future.

Right now I am safe. I am loved. I am taken care of. I’m good.

I can walk, talk, eat, dress, think (mostly, lol), see, hear, bath, etc. So what’s the problem?

I am weak. I am wobbly. I am scared of becoming worse in the future. I am afraid of disappointment, in myself and of disappointing others.

Last week during the IV steroids, Rob would ask how I was doing. The day that I said I was walking a bit better, he responded, “I didn’t know that you were having problems.”

Yes, I don’t always want to say - today my legs are crap and my balance is worse. I just try my best to move smoothly and use the correct muscles. Right now my hip flexors are weak and not yet with the program.

Then there’s the numbness. Physically numb and emotionally numb (primarily from the steroids).

The surface of my skin on almost my entire body is still numb. It’s kinda funny with the safety pin test. Poke, poke, poke. Wait, wait, wait. Until a spot feels almost sharpish. It becomes a game. “Let’s find where Lisa will actually think about saying OUCH.”

But one thing which doesn’t OUCH is that Rob knows just how much to be there. He is supportive and patient. On the days I was trying really hard to contain the vile words and emotions, he backed off with the soft voice.

He wanted so badly for me to announce that things were better and better. I just wanted for nobody to talk to me or ask any questions at all. Together we made it through.

Intimacy. Give and take. Wax and wane. Flow with the tide. That’s life.

Two weeks from now, I’m sure that I’ll be feeling much better. It is inevitable.

No matter what happens in the future. It’s ok. Life is a learning experience.

Sweetie, thank you for being here for me. And Happy Belated Birthday!!!

(yes, we can blame the steroid-mush-brain on forgetting the BIG 40.)

XOXOXOXO

Financial Assistance for MS Medications

2009-06-24T22:43:00.001-04:00

When it comes to finding financial assistance in paying for expensive medications, the process is not often an easy one. Many of the pharmaceutical companies that produce drugs specifically for the treatment of rheumatoid arthritis make financial assistance available to patients in need. This benefits the patient and the drug company. Face it, they want you to continue to use their medication and not move to the competition, which might have better assistance available.

Often each company will run their own program or make contributions to independent foundations that handle the administration of "free medication" or copayment assistance. Then, don't forget about sources of lower cost generic drugs and/or drug coupon programs.

I have compiled an annotated list of assistance available for multiple sclerosis medications.

Read this post in its entirety:

Financial Assistance for Your Rheumatoid Arthritis Medications

Financial Assistance for RA Medications

2009-06-22T21:32:00.003-04:00

When it comes to finding financial assistance in paying for expensive medications, the process is not often an easy one. Many of the pharmaceutical companies that produce drugs specifically for the treatment of rheumatoid arthritis make financial assistance available to patients in need. This benefits the patient and the drug company. Face it, they want you to continue to use their medication and not move to the competition, which might have better assistance available.

Often each company will run their own program or make contributions to independent foundations that handle the administration of "free medication" or copayment assistance. Then, don't forget about sources of lower cost generic drugs and/or drug coupon programs.

I have compiled an annotated list of assistance available for rheumatoid arthritis medications.

Read this post in its entirety:

Financial Assistance for Your Rheumatoid Arthritis Medications

Carnival of MS Bloggers #38 - Health Reform Edition

2009-06-18T10:30:00.002-04:00

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

"Health Reform Edition"

Americans Are What Is Wrong With America… by Blinders Off at Living With MS

When is it going to stop…?

My healthcare coverage was the best to have, but over the years, benefits are slowly disappearing, while my premium is slowly rising. Out of pocket expenses were something I did not dread, but I dread going to get a prescription. Co-pays are steadily increasing. So far, I am still one of the fortunate ones to afford my drugs to fight MS… What about the ones who cannot afford to take the expensive Avonex, Betaseron, Copaxone, Rebif, and Tysabri to slow the progression of multiple sclerosis.

DMD’s cost more than what many Americans make a year, mine in particular cost $1700.00 a month. I will not be surprise if day come when my health insurance carrier find a way for me to pick up most of that cost. If that day comes, I will be like many other Americans deciding between purchasing my prescriptions over purchasing food to live.

I am pissed off; I am sick and tired of our legislators the Democrats and Republicans bullshitting when it comes to my life. The Dems and the Repubs want American people to believe they are working hard in our best interest to fix the healthcare crisis.

I do not give two rats asses which party comes up with a solution for the healthcare crisis here in America. The writing on the wall started when HMO’s came to America in the early 80’s. Healthcare has been changing and rising at the disadvantage to the American people since the HMO white horse rode into a town near you.

To fix the healthcare crisis here in America, it is time for Americans to demand the same coverage Congress receives. I plan to write my representatives demanding the opportunity to have the coverage they receive. It is time for all Americans to DEMAND IT!

I remember then candidate for President Obama saying during his campaign, "Americans deserve the same coverage offered to Congress." Therefore, if Congress is having a problem putting together legislation to offer us the same coverage they have because of the Democrat and Republican bipartisanship bullshit. The American people need to remind them whom they work for during their election year, and VOTE their asses out of office, and put some fresh blood in...which is what Americans should do to kick start fixing what is wrong in America!

Remember they are in Washington to be working for us and not for the Insurance and Pharmaceutical industry political donations and perks.

WHAT?????? by Sherry of Word Salads the Demyelination of Me

Wait. Wait. Wait!!!!! I've been talking about Medihell for some time and I still have to DEAL WITH IT when I get home. I haven't gone back to Social Security to tell them they have the wrong income AND now I hear THIS????

STOP! STOP! STOP!

If I go back to work, I lose my Copaxone because Medicare will only pay 33%. If I stay "poor", Medicaid will pay for it. STOP!!!!!!

I'm going to become a political activist on several causes, especially medical care since I "cannot work" to get Copaxone. Damn if you do, damn if you don't. I have found my passion.

Today we go to my daughter's apartment....it will be a hard day. I am trying not to think about it. Some of her things will be put in storage and brought up to Colorado at a later date- and the things I want now will go back in a car with Barry. That is all I want to say about her today.

I am emotionally empty, but fighting mad....about medical care, health insurance and more. It failed my daughter, and it is failing many. It is keeping me from working as well as those who do not want "free money" to sit around when they can work part-time.

I will be turning into a political activist for better health care. If you think Cindy Sheehan had a big mouth, watch out. (FYI: I am no fan of hers) I'm going to be walking, crawling or catching a ride on a turtle with a big stick to Washington, DC.

Somehow, someway I will get my voice heard.

3 Places to get in on the Health Care Reform Debate
Written by Ann Pietrangelo of MS Maze

The health care reform debate has reached fever pitch, and is finally getting the attention it deserves. With more than 45 million uninsured Americans, many others woefully under-insured, and people going without needed care, the time is right for you to put in your two cents worth… or more.

Three online sites offer you the opportunity to sound off, share your own successes and failures within the health care system, and state what you think must be done.

Care2 Reform Health Policy seeks to provide news and commentary on health policy and related issues. Care2.com encourages active participation and provides readers with the ability to create full profiles, network with other people with similar interests, and comment… comment… comment. I am a regular contributor to Care2’s health policy cause and welcome suggestions and insights from the community. Please stop by and drop me a line!

HealthReform.gov is a government website providing news and information on health care reform. There is a section to Share Your Story and Ideas about health care reform, and a place to Show Your Support, if you are so inclined.

MakingMedicineSmarter.org is a new site that shines a spotlight on numbers, such as the annual cost of treating chronic and complex health conditions in the U.S., and the possible annual savings on health care spending with electronic and protocol efficiencies. Actual numbers tell an eye-popping tale. The site is also open to comments and suggestions.

Help put a human face on health care in America.

Visit and participate:

Care2 Reform Health Policy

HealthReform.gov

MakingMedicineSmarter.org

This concludes the 38th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 2, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 30, 2009.

Thank you.

Comments for this post.

Patients for a Moment is Hosted at Duncan Cross

2009-06-17T06:30:00.003-04:00

First Edition of Patients for a Moment is up at Duncan Cross' blog. Go take a gander and you will see a couple familiar MS bloggers who have participated. And if you don't already read the Adventures of RA Guy, I highly recommend it especially his post "Survivor: Tierra Del Fuego" which is included in this round-up. Great stuff.

Patients for a Moment: A Blog Carnival in the Making

2009-06-13T18:47:00.002-04:00

Attention to all Patient Bloggers!! The following post is from Duncan Cross who has founded a new blog carnival for us patient types. If you get your posts in to Duncan by midnight (eastern time) tomorrow on Sunday, he will include them in the Inaugural edition Wednesday. Please consider participating.

Patients for a Moment

I decided to call the patient-centered med-blog carnival “Patients for a Moment”, a weak pun on the Chinese proverb, “He who is not patient for a moment, has days and months of trouble”. As you can see, I sketched out a logo for it - now all I need are posts.

If you’ve written a post this week that might be interesting to a patient audience, send it to me. It can be on any topic, issue, disease, whatever - so long as it is likely to appeal even to patients who don’t share your specific circumstances. You can be a patient, doc, nurse, wonk - whatever. Some patient bloggers might even get a direct appeal from me for material, but save me the trouble and submit it yourself. And it can be the same post you sent to Grand Rounds, or something written specifically for this carnival.*

Send to dx@duncancross.net :

1. Your name (as it should appear)
2. Your blog’s name
3. Your post’s title
4. Your post’s URL

Get it to me before Sunday midnight (Eastern time) and I will have the inaugural edition of “Patients for a Moment” up on this site by Wednesday morning.

Also, let me know if you would be interested in hosting PFAM at some point. I am happy to get this carnival going, but I intend to put it on a rotation akin to Grand Rounds (okay, shamelessly copying Grand Rounds).

In the meantime, I will look forward to your posts! Thanks.

*Fun fact: “Carnival” is from a Latin word meaning “removal of meat”, which has a certain ironic resonance for those of us with surgical histories - but we won’t be taking it too literally.

Bouncing Around: Doctors and Eyes

2009-06-13T17:14:00.008-04:00

Have you ever gone to a routine neurology appointment (or rheumatology appointment, or any other type of appointment) and hesitated when the physician asked, "so how's it going lately?" ?

Well, I did yesterday...hesitate that is. I laughed once and said, "I really want to say - great! But that's not exactly true."

Actually, I did the same thing a week ago Wednesday at my annual eye doctor appointment. As well as the acute care appointment with my primary care doctor on Monday of that same week.

So what's going on, you ask? I'd like to know too.

I had hoped that it was simply another urinary tract infection like the one I had in February which caused a pseudoexacerbation. At that time, there was blood in my urine, the cultures came back positive for bacterial infection, and two rounds of Cipro later, I was feeling much better and on the way back to developing strength and coordination with the physical therapist.

Now two weeks ago I started walking funny, uncoordinated, and definitely not fluid by any means. I had also begun feeling just not well, fatigued, and over-emotional.

Describing all of this to my primary doctor, I said, "it's either another urinary tract infection or a multiple sclerosis relapse." She responded, "well, I vote for the infection." So did I. I immediately started with two rounds of Cipro and waited to feel better, which only happened to a moderate degree and hasn't lasted.

During my eye appointment, I expressed great concern for the declining visual acuity I've been experiencing in recent months, however my color vision remains unchanged. Even mentioned that when I'm teaching, and looking from music down to student's hands or to their notebook in which I write, my eyes will rebel and look anywhere but where I want them to focus. It is disorienting and somewhat dizzying.

We couldn't quite get my right eye corrected to 20/20, but did decide to adjust my prescription power. If you know anything about severe myopia, you will appreciate that my prescription power is in the range of -13.25 diopters. That's some naturally poor eyesight. LOL. I have both new contacts and eyeglasses on order.

That brings us up to yesterday's neurology appointment.

I prepared to discuss the repeat UTIs after not having one since college, asking if consulting a urologist was in order. I prepared to discuss the increased cognitive problems I've been experiencing which have continued to increase in recent months. My short-term memory is noticeably affected as is my ability to stay on top of things. I also mentioned the eyes which don't always cooperate under certain circumstances.

For the eyes, she brought out a large drum marked with alternating black and white columns. She spun the drum in one direction while I gazed at it, then she changed the direction. This started my eyes bouncing!! Hmmm, a little nystagmus. The bouncing continued for at least 20 more minutes. Oh boy, how exciting (sarcasm here).

Our plan right now is this. Urine analysis and culture to look for infection. If the results are positive, then we will try a different antibiotic. If the results come back negative, then she'll be calling me into the infusion clinic for Solumedrol on Monday. It will be called an official relapse.

If this does seem to be the case, then she will likely want me to undergo an MRI sometime after the steroids have worn off to look for new lesions. Nystagmus is associated with lesions in the cerebellum or the 8th Cranial nerve. We will also move forward with consulting the urologist and get a neuropsych evaluation of my current cognitive abilities.

I really don't want to be having a relapse right now, but admittedly some of my symptoms have been slowly getting worse in the past six weeks. These symptoms include items which are new to me.

So I will be picking up my new glasses and contacts on Tuesday, as well as undergo a Visual Fields test while I'm there. Monday I will either be starting a new antibiotic or steroids. After that I need to reschedule the rheumatology appointment which I had canceled.

It's busy being me!!

Art on Canvas becomes Art on Cotton

2009-06-12T19:06:00.009-04:00

We have a wonderfully creative community here amongst the MS Blogging Community.

Tara of Living Day to Day with Multiple Sclerosis makes Creative Custom Canes.

Cathy of Navigating the Journey of MS runs The MS Shoppe. Cathy has announced the winning T-shirt slogan which is now available for sale. Check it out. BTW, I voted for this one, even if it wasn't the one I submitted. LOL.

Todd is a screen printer who recently started a blog called But You Don't Look Sick. Please welcome him to the MS Blogging Community. You may recall that we talked about Todd's MS Artist T-Shirt project back in April.

The shirts are ready to debut at MS T-Shirts.com. Read an explanation of how the project took shape, the following is a excerpt from Todd's new blog.

I really appreciate the positive feedback I have received from non MS’ers and people that are diagnosed with multiple sclerosis, in regards to an up and coming MS artist t-shirt sale. What I have not spoken to is how much this sale will benefit me. See I have an internal war waging everyday. I was diagnosed with MS in 2000 and I am a conservative. So what’s the problem you say? To tell you the truth maybe there is no problem except in my head. I find myself not telling my MS friends that I am conservative (not republican please save the nasty e-mails) also I find I do not discuss MS with my business associates. The fund raising sale I have initiated allows me to donate to a cause I am very passionate about and I get to sell something (it’s in my nature). So I really owe a big thank you to the artists and others that allow me to do this.

Last fall while surfing the NMSS site I ran across a section of artists that have MS, I was impressed with the talent of these folks. Now being a t-shirt guy I saw this art on t-shirts instead of canvas. I could sell these and make a donation to NMSS. Bing!(not the search engine) an idea is brewing. After speaking to these artist I thought they deserved to be in the revenue stream as well. Great! I was stoked (my son says that) Now I can directly help a person with MS and make a donation that will help all of us in the future. Tada- MS T-Shirts.com was born. In the coming months I will highlight each artist in a little more depth. I am very lucky to have met these folks, they are very inspiring to me.

Buy a Shirt, Help an Artist, Find a Cure.

I really enjoy the following piece of art featured this week.

Notes from the artist, Karolina Wojdak:

"Although I never attended any art classes, I've been drawing since I was a little child. And now I know where were my visions coming from. I've been diagnosed with MS at the beginning of '07, when I utterly lost control over my right arm and eyes, the neurologist assumes I've been ill since '02. I'm still trying to regain my drawing ability, by the help of my family and friends I know I can't give up trying - drawing is my whole life. With my art I'd like to help MS people like me - to finally get the normal life, to get the cure."

Please visit the Art to Shirt Store or go to MS T-Shirts and help find the cure.

Life Cut Short

2009-06-11T12:41:00.005-04:00

Sherry, my heart and prayers are with you.

Nicole: November 7, 1974 - June 10, 2009

Living Day to Day with MS and RA

2009-06-10T12:39:00.000-04:00

Whether it's the multiple sclerosis or the rheumatoid arthritis, it doesn't really matter. The result is that each day starts on wobbly footing for me and only time will tell if it will be a wobbly day. This is the reality of living with autoimmune disease. Only time will tell.

It is not guaranteed that each patient will experience the same symptoms or disabilities. Just as it is not guaranteed that each patient will slowly proceed on that downward slope with the disease or that they can stop it in its tracks with the various medications they take. There are no guarantees. No set-in-stone answers available to the questions of how to deal with the disease. What works for me may not work for you. What works for me today may not work for me tomorrow. I might not be able to function in the afternoon due to overwhelming fatigue which sets in out-of-the-blue. But to do my best each day is all I can do.

Read this post in its entirety:

Living Day to Day with Rheumatoid Arthritis and Multiple Sclerosis

Secondary Sexual Dysfunction in MEN and WOMEN with MS

2009-06-09T15:02:00.002-04:00

In multiple sclerosis, the incidence of fatigue, muscle tightness or spasms, bladder and bowel dysfunction, and pain, burning, or other discomfort can have adverse effects on the experience of sexual activity. The interference of these symptoms with sexual function can often be alleviated by taking an aggressive approach to symptom management.

Many sexual problems produced by MS symptoms or MS treatments can be managed with the help of your medical team.

§ Pain can be controlled with medications.
§ Spasticity can be reduced with medication, cold packs, and stretching or massage.
§ Fatigue can be alleviated through energy conservation and, in some cases, with medication. Making love at times when the partner with MS is most energetic (usually the morning) will also help.
§ Alternative sexual positioning can help with both spasticity and weakness. Using pillows for support or trying the side positions can relieve discomfort.
§ Catheters can be secured during sex. Your doctor or nurse can show you the best way.
§ Medication side effects may be minimized by taking medications at a different time of day or by changing the timing of sexual activity. You might also consult your doctor about switching to medications with fewer sexual side effects.

Please talk to your medical team so that you can eliminate the secondary problems which interfere with your primary sexual function and quality of life.

Rest this post in its entirety:

Secondary Sexual Dysfunction in Multiple Sclerosis

one word....

2009-06-07T17:23:00.003-04:00

Forget
About
Thinking
In
Grand
Unifying
Elucidations

Carnival of MS Bloggers #37

2009-06-04T21:57:00.000-04:00

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

"Dog's Best Friend"

Good-bye Sue, We Miss You! by Maryann

On Mother's Day, a friend of mine died. I knew Sue through Saint Francis Service Dogs. She was one of the first people to be partnered with a St. Fran dog, and his name is Barkley. Yes Barkley is 12 years old, and he was by her side for ten years. Barkley will continue to live out his life with Sue's husband and family. He is a very sweet golden retriever who loves life and people.

Sue was one of these people who never met a stranger, always took a moment to stop and talk to people who wanted to know about Barkley and service dogs, and always had time to talk to friends and ask how they were doing and leave them with a smile. She had a myriad of health problems, and was on supplemental oxygen at all times. She had seizures. Barkley knew to lay across her during a seizure, and then to go for help or the phone afterwards.

We live in a small town, and every time we went into Walmart or Krogers someone invariably would say, "you just missed Sue and Barkley."

During one of our partner classes, Sue told a funny story about Barkley. At night when he needs to go out to park (bathroom), he waited until one of them turned on his flashlight and handed it to him. He then would go out with the flashlight to do whatever business he wanted to do. Then, he will come back inside and hand back his flashlight. So funny, so sweet!

Sue's memorial service was this past Monday. Barkley was sitting with the family. There were also five of us with our service dogs who attended the service, plus lots of family and friends. Sue's son is in the Marines in Iraq, and the service was postponed until he could get home to be here for it.

Sue's husband said that Barkley is okay as long as they can keep him busy, but then he starts looking for Sue. It is so very sad, because it's impossible to explain to an animal that the person is gone.

Good-bye Sue, we miss you!

Just as Sue had Barkley, Maryann has Montana who is her service dog. Montana seems to get the tastiest treats homemade by Maryann. Check out her most recent recipe at Cooking for Montana.

Maryann and Montana met through the Saint Francis Service Dog program. As an exciting bit of media, they are featured in a Public Service Announcement which will air on television in her area. Good job guys!!

This concludes the 37th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 18, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 16, 2009.

Thank you.

Comments for this post.

The Gray Ghost

2009-06-03T18:23:00.003-04:00

Things are a little tense here Chez Emrich. There is a new member of our household who is working hard to fit in and be accepted by the resident felines.

Two weeks ago a lonely "kitten" was seen on the front sidewalk, meowing towards the frontdoor. In the dark, I wondered if the cat eyes belonged to one of my own feline team. But going outside to investigate, it became clear that the eyes belonged to a new child on the block.

This baby kitty was hungry and I helped to fill his belly with some tasty cat food. He gobbled the food as quickly as possible before a possum crossed the street to investigate the source of food.

The next evening, the same kitty was on the porch meowing in request. He found another meal and welcomed a little scratching between the shoulder blades. This routine repeated each day with the exception of an increased desire to be pet and held. This gray ghost had obviously had a home in a prior life.

One week ago, poor little Oscar - see he had already told me his name - showed up for dinner with a severe wound on his tail. A large chunk of fur and skin was missing, exposing what I only hoped was muscle. Quickly discussing the situation with Rob I decided to bring Oscar into the house for the night. I wanted an opportunity to clean the wound and give Oscar a dry place to sleep.

We went quickly to the music studio in which I have a separate bathroom. Created a temporary litter box (which he used faithfully), provided more food and water, and folded up a fuzzy bathroom rug for a bed. Oscar purred and purred after he got past the shock of being in a strange place.

Oscar, the gray ghost, stayed in the studio for the following days so that I could keep an eye on his tail and so he could stay fed. On Saturday I finally made the decision to bring him to my vet to receive his shots and get checked out. To our surprise, Oscar kitten is estimated to be 2 years old according to his teeth. Wow, he is so small and behaved very kitten-like, kneading his paws while he receives affection and meowing with a kitten's voice.

It was last Friday that Oscar first came in direct contact with the lords of the manner, Miss Musette and Mister Pippin. Pippin seems very curious and will likely become a good friend in due time. However, Musette is furious!! She complains loudly any time Oscar is within sight.

Sunday was the first day during which all three felines were left loose within the house together. In the early pre-dawn hours on Monday, there was a kerfluffle. Musette was highly worked up and quick to start. Oscar couldn't be found. Since that time Musette has become increasingly less tolerant of the "intruder" within her territory.

Poor little Oscar has lost a bit of his kittenish joy and desire to play. He has much on his mind and at nearly every turn has the Queen of the Castle threatening bodily harm. It seems that Pippin will become a good friend to Oscar, if only Musette would calm down and leave them be. Her suspicion and angst is contagious, although Pippin has greeted Oscar with kindness.

A mother to this young brood, I desire peace and joy within the household. Hopefully with time the stress will dissipate and the anger and angst will prove to be useless. It has only been one week. Patience, Lisa, patience.