I founded the Carnival of MS Bloggers in 2007 to connect the growing MS Blogging Community. My vision was to become the central hub where bloggers could find each other and to feature a collection of independent patient voices.

As larger MS organizations have also begun to feature patient voices on their own websites in recent years, the Carnival of MS Bloggers is no longer the single driving force in serving this wonderful community. For that we should all be grateful.

Thank you for continuing to support me in this one-person labor of love over the years. As of now, I will be taking a break from hosting the Carnival of MS Bloggers.

Please feel free to continue to email me to alert me to new MS blogs to add to the comprehensive MS Blogging Community index.

Sincerely,
Lisa Emrich

Friday, December 12, 2008

Carnival of MS Bloggers #25

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Things May Be More Than They Appear



Shauna shares
"My Zebra"

At the age of 34 I had a relatively unremarkable medical history. Typical childhood diseases, mono as a teenager in university, normal checkups at my yearly physicals. So when I went to my doctor in January of '98 with gradual weakening on my right side, I figured I had a pinched nerve in my neck and told my doc that. She conducted a neuro exam and said she wanted me to see a neurologist. She'd get back to me, but if it got worse, I was to come see her again. In the meantime she sent me for an x-ray of my neck, as a pinched nerved or something out of sorts in my neck was still a possibility.

I had the x-ray the next day but the day after that I was worse. Back to the doc I went and she sent me straight to the hospital where I was diagnosed with probable MS at the end of the day. Time from onset of symptoms to diagnosis was 6 days.

My mother is politically active, behind the scenes. So over the years people have commented to her that I probably got my quick diagnosis because of her connections. She denied it, as she had nothing to do with it, and explains that I was very lucky.

I didn't have a thick medical file to begin with, no other major or chronic illnesses, no exposure to dangerous chemicals or the like at my job, and I had an excellent rapport with my doctor. I went to see her once a year for my physical and that was pretty much it.

A couple of years ago, I was facilitating a talk given by one of the neurologists about treatments of MS. One of the questions from the audience was "Why does it take so long for some people to get a diagnosis?"

In a nutshell, a few things are at work. First, presentation. We all know (or we should know) that each individual symptom in and of itself could indicate any number of things wrong. Vertigo? Inner ear infection. Tingling in your arm? You slept on it funny or it's a pinched nerve.

Second, our medical history may have nothing in it to indicate a predisposition to neurological events. No one in my family had MS.

Third, our medical history may be jam-packed with other chronic illnesses such as allergies, cancer, chronic infections, diabetes. Other illnesses are likely to be investigated first, before MS, as you have a history of them. Doctors are taught that "when you hear hoof beats, look for the horse, not the zebra." MS is a zebra. I had only horses in my medical history.

Fourth, cost and eliminating the obvious. Working up a lab for an inner ear infection is going to cost a lot less than an MRI for a tumour or MS. If the lab comes up negative, ear infection can be eliminated from the list of differentials.

Fifth, our own ignorance. How many times, pre-MS, have we attributed our symptoms to other benign illnesses? If we have a couple of days of vertigo we think we must have a flu or inner ear infection and it goes away. Tingling in our arm? We slept on it funny and after a couple of days it goes away. And those symptoms may have been days, weeks, or even months or years apart. So do we associate one with the other? Nope. It's not until reflection after diagnosis that we can recall symptoms that may have been indicators of MS. I recalled being at the movies a few months before my diagnosis and experiencing tingling in the fingertips of my right hand. That symptom lasted a couple of days, then went away, forgotten until two years after my diagnosis when I was thinking about any possible symptoms I had long before my diagnosis.


A study was released this week that indicated that people who were obese, smoked, or had other physical or mental health conditions took one to 10 years longer to be diagnosed with MS than those without those conditions. The more medical problems someone with MS had, the more severe the disease became by the time they were diagnosed.

The results of the study are not surprising. What is interesting, though, is the level of disability reached for those whose diagnosis was delayed. One could hypothesize that early diagnosis and early treatment might delay disability, which is the point of the disease modifying drugs.

The lessons to be learned from all this info? Take responsibility for your own health care. That means eat right, sleep right, and exercise; take care of your body, know your body. Learn what you can about any other conditions you may have. Develop a good relationship with your doctor.

Once you are diagnosed with MS, you still have continued responsibility for your own health care. Not all symptoms are MS related. We still get the flu, cancer, arthritis, or Parkinson's. Just because you are the proud owner of a zebra, there's still the potential for a herd of horses to be hanging around.



Lots of blogs out there include comments about how isolating life can/does become when so much attention has to be given over to the body basics so much of the time and how it is often difficult for others to grasp the full impact of what is going on. In light of these challenges a couple of links about Living Libraries might be of interest to others.

For those that have not heard of a Living Library, a Living Library has Living Books. A Living Book is a person, that has chosen to be a public representative of a certain group. An example of how people can be, if only minds are open long enough to find out, who and what they really are. But before anything else, they are courageous people that stand by their convictions and are willing to discuss their values with others.

Maybe people have one in their area or like the idea of starting one in their area?

Singer Melinda Schneider has written a song called 'Be Yourself' which was inspired after seeing a program about one of the Living Libraries on a talk program by a well known Australian interviewer Andrew Denton.

Here's a snip from the interview (full transcript) where she talks about the trigger for the song:

ANDREW DENTON: Melinda I want to show you a clip from ENOUGH ROPE of a transvestite called Sarah who inspired you to write the song you're going to perform at the end of the show called Be Yourself.

MELINDA SCHNEIDER: I just loved the story of the living library.

ANDREW DENTON: Yeah.

MELINDA SCHNEIDER: And his or her story was a fascinating one. Yeah I just I loved the acceptance of his wife when she you know when he told her that he was a transvestite and he'd been hiding it from her and she said I don't care what you do, just don't lie to me and they stayed married and you know he was able to do what he wanted to do and you asked him you know if there was anyone out there going through what you went through what would you say to them and he said be yourself. Everybody else is taken.

LAUGHTER

MELINDA SCHNEIDER: And it hit me like a tonne of bricks because it was exactly what I was going through at that very time coming out of my divorce and getting back to my old self again and I just loved it.
The quote to 'Be yourself. Everybody else is taken' and the Living Libraries' active way of reducing prejudices and providing positive meaningful experiences struck a chord. Seemed like not a bad thing to share.



This concludes the 25th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on January 1, 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 Monday, December 29, 2008.

Thank you.
Comments for this post.

Thursday, November 27, 2008

Carnival of MS Bloggers #24 - Thanksgiving Edition

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





Once upon a time there was a little girl who had MS. She lived in Indiana with her Auntie Vi, Uncle Arthur, and Mother Rosie. She loved her life with her family, but dreamed of a place faraway, a place full of adventure and a cure for MS…some place over the rainbow.

One especially dark night, there was a tornado that blew the little girl up, up, and away. When she awoke, she was in a very strange land and she was afraid. She saw a sign: “Welcome to the Emerald City, Seattle!” Before she could think about that, a blue seagull flew over her and sat down in front of her.

“Hello, little girl,” spoke the blue seagull. A talking bird! How wonderful, the little girl thought. The blue seagull twisted his head all around until he was looking at her upside down, “What’s your name?” The shy little girl cleared her throat and said softly, “Diane?” The blue seagull’s head spun all around like a top before screeching to a halt, “Are you telling me or ASKING ME?”

Then muttering something through his beak, he flew away, leaving Diane all alone again. She grew frightened and wondered aloud, “What should I do? Where should I go? I have MS and I’m scared.”

“Follow the yellow sick road!” Diane jerked her head to the right, looking for who had said that. “Yes! Follow the yellow sick road!” shouted another voice, but where were the voices coming from? So many voices began screaming the same command: “Follow it! Follow it.”

Diane saw before her a path of yellow. With each step she encountered an odd sensation: vertigo, stars in her eyes, numb feet, weak hands, piercing migraines, depression, and a heaviness in her legs. As she walked further, she saw a corn field ahead and hoped there might be a cob to snack on. If only she could make it one…more…step… suddenly Diane felt a soft tap on her shoulder.

Standing behind Diane was a beautiful woman in a billowing dress holding a wand with a bright white star on the tip. “Dear, where are you headed?” spoke the gentle lady.

“I’m looking for a cure for MS,” said Diane with great authority. “WHO are YOU?”

“I am the good witch of the north. The person you seek is the Wizard of Plaus; he is very plausible.”

“How do I find him?”

“You must stay on the yellow sick road. But be very careful along the way,” said the good witch as she started to be blown upward, “the wicked witch of the west coast is never far away. Stay on course, my precious child. And good fortune to yooooooou,” her dress blew up like a sail and she floated into the clouds as silently as she had appeared.

“No! Don’t leave me all alone with MS!” cried Diane.

“Oh, my sweet, dearest, ugly, little slime. Your MS is my delight. T-Cells! Take flight! Attack her nerves! Eat her myelin.” Rubbing her mole infested rumpled hands together, the wicked witch of the west, gazed into her foggy magic ball as the winged T-Cells and viruses began flying out the cracked windows of her crumbling castle walls. With her 13 inch fingernails she grabbed a passing T-Cell. “And don’t forget her spinal cord and brain.”

“BREAK THE BLOOD BRAIN BARRIER!” they screeched as they flew.

Diane fell near the corn field. Looking up at the pastel sky, two large eyeballs stared back at her! “AHH!” she screamed to an echoed “AHHH!” from the scarecrow attached to the eyeballs. “Who are YOU?” asked the scarecrow. “I’m Diane. I need to talk to the Wizard of Plaus. I need a cure for MS.”

The scarecrow helped her up. “Mrs? Miss?” “No, no, MS—Multiple Sclerosis. It is a disease of the central nervous system.” The scarecrow frowned; his stitched rag mouth turned upside down, “Oh, the brain. If I only had a brain. I’m going with you and ask the Wiz of Plaus for a brain.”

Off the two went, both falling and getting back up as they moved, neither expecting what jumped out in front of them---a lion! He roared so loudly that the straw blew out of the scarecrow and all that remained was his hat and two button-eyeballs. “Look what you did!” shouted Diane.

The cowardly lion hit his head with his giant paw. “Aw shucks. I’m so sorry. What was I thinking? You both came upon me out of nowhere and scared the fur balls out of me. What are you doing way out here?”

The scarecrow’s stitched rag mouth started speaking. “We are going to see the Wizard of Plaus. She wants a cure for MS and I want a brain. Now help put me back together. With that said, he directed the lion and Diane exactly how to build him back together. “I am, am, am, I mean if you don’t mind, I um, would like to, uh, go along and, well…well…”

In unison Diane and the scarecrow impatiently barked, “Well, WHAT?!”

With his tail between his legs, the lion said meekly, “Ask for some courage?”

After continuing along their way, the troop of three soon saw an enormous structure rising high into the sky, up into space like a needle. The Emerald city’s Wizard of Plaus was only a skip, or twenty, away. SQUEEEEEEEEEL

What was that, they wondered. KEEERRR-PLUNK. In their path a tin can fell. “Help me. Please help me.” Diane thought--- what next? A talking scarecrow, a cowardly lion, and now a talking tin can? A glance to the right showed that in fact this was the head of a tin MAN! The scarecrow took off running, returned with an oil can and began to oil and reconnect the tin man’s head.

“Oh, that feels chicken-biskets good! Thank you. Who are you wonderful creatures?” asked the well-oiled tin man. After introductions were made the troop became four. The tin man wanted a heart. But before they began to skip, the flying T-Cells and viruses had arrived. They swarmed Diane, causing her body to stiffen like iron.

“Lion, swat them!” commanded the scarecrow, “Tin man, put your cool metal on her. I’ll give her my stick arm to walk with.” The tin man wrapped his cool arms around Diane and the lion bit and swatted the T-Cells until they gave up and flew away.

The wicked witch of the west coast was furious at her immune system “mission unaccomplished” and she took a step outside to shoot her returning warriors with Solu-medrol; but the Emerald city rain dealt her a deadly blow. “I’m melting.” The Seattle rain melted her away forever. Her anger blinded her to the effect fresh rain had on her.

“We are here,” said the troop as they eyed the huge tower. A guard with a bad haircut blocked the entrance. “Don’t worry,” said the tin man, “he is the bill and gates keeper; just throw apples at him and he runs away.”


“WHO GOES THERE?” bellowed a booming voice from the top of the space jousting needle. The lion began to shiver and the scarecrow turned to leave, stopped only by the tin man. Diane spoke, “I want a cure for MS. Scarecrow wants a brain, Lion wants courage and Tin Man wants a heart.” “GO AWAY” Go away? That’s it? “Look, an elevator, let’s go to the top,” said the scarecrow. Up they went until the doors opened and there, standing with a microphone was: Madonna.

Diane couldn’t believe her eyes. “YOU are the great Wizard of Plaus?! You are just Madonna!”

“Excuse me? JUST? I am a music legend, a cultural icon. Yeah, I’m a frigging wizard too AND I write children’s books. I’ve been watching you. You are all jerks. Lion. You want courage? YOU’RE A FRIGGIN’ LION, King of the Jungle. You gave an arse whuppin’ to those T-Cells. Tin man, woe is me; you want a heart, WHAT ARE YOU A VIRGIN? You hugged Diane when she was down. You cared about her. That takes heart, you dope.

And YOU, scarecrow, you want a brain? WELL JOIN THE CLUB! You figured out how to save Diane and fix tinny and put your own SELF back together WITHOUT YOGA OR BOTOX. You bowlbeepers already HAVE what you want.

The lion let out a roar that shook Mt. Rainier; the tin man felt his heart beat; the scarecrow straightened his hat and stood tall…Diane walked slowly up to Madonna. “What about me? Where is my cure?”

Madonna took off her cone bra and put her hands on her hips. “Listen Kid, right now there is only one cure for MS that’s plausible, and the good witch gave it to you the moment you landed in Plaus; and that is hope, a belief that if you just follow your dream anything is plausible. Anything is possible."

Anything is possible. Anything is possible. “Diane? Diane?” “Auntie Vi?”
“Time to wake up. Here, let me help you with your hair. There’s a piece of straw in there…”



A few discussions floating around the MS Community blogosphere:

Lanette returns from her wedding in Jamaica. Yeah Mon, photos included.

Shauna visited Jack's Lake and saw deer tracks and an old bridge.

Lisa discussed Spasticity, Disabilty, and Solumedrol at Multiple Sclerosis Central.

Barbara shares A BODILY SCREAM OF INNER LONELINESS.

Nadja, the Denver Refashionista, is Cured!! No, not that kinda cured. Go read.

Anne thanks everybody for More Success!! in raising funds for Herrad's cushion. I thank you too and Herrad received the funds yesterday. Whooohoooo!!

Richie, Herrad's Sweetie, shares what a typical day entails for a caregiver. Thank you Richie for all that you do.

And Serina shares a favorite Christmas Story about Big Wheel in Indiana.


This concludes the 24th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 11, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, December 8, 2008.

Thank you.
Comments for this post.

Thursday, November 13, 2008

Carnival of MS Bloggers #23 - MS Change Edition

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




I've started to notice that a lot of my friends are starting to disappear. It's like this widespread epidemic!
From a medical point of view, I knew that my life was going to change when I was diagnosed with MS seven months ago. Hell, it had already started changing before I was diagnosed. I was worried about things like losing the ability to walk and see. I was worried about how I would go on to be a stay at home mom if I could barely take care of myself. I still worry about that now.

My MIL told me that she has a friend with MS and he says that it stands for "Many Surprises" and I think that's pretty fitting. Atleast in my case, I never know how I'm going to wake up one day to the next.

What I didn't expect to change was how people who knew me before MS would start to look at me differently. They talked to me in a different way. I had some who would try to help out by asking me everything about MS and then I had some who figured that they would just ignore it all together.

The thing was..I used to be a pretty fun person to be around. I loved to laugh and most of the words that came out of my mouth had a sarcastic tone to them. But suddenly, to my friends, I'm this broken, fragile little person who can't be toyed with.

I've had some that have stopped calling all together. Two of my closest friends used to call everyday and we could spend hours on the phone. Now I haven't heard from either one of them in months.

But I will say, I have found some funny sides to this kind of thing.

The hubs has a Great Aunt who is in her 90's and lives in Connecticut. She's a very interesting lady, spent her life working for the FBI but she won't tell you what she did, at 80 she wanted a new car (new car to her meant used car new to her) but the one she wanted was a stick shift so she taught herself how to drive it. She's never been married or have any children and she's not exactly the kind of person to pity someone.

During a phone call, my MIL was talking to her and Aunt said "So where is Tracy? Is she around, could I talk to her?" My MIL told her that I had just gone upstairs to use the bathroom. Aunt did this tisk, tisk noise and said "Oh that poor thing."

When I got on the phone I said "I know, right? You'd think that they could fix something! I mean, I have MS and I still have to go pee..where's the justice in that?"

See, I'm still me.

The thing is, I'm a little more dangerous now. Think about it. Most of the time I use a cane. The cane is long. One time, the hubs said something and I wanted to hit him but he was out of reach so I whacked him with the cane. The hubs says that the cane hurts.

And I just found out yesterday that I'm getting my motorized scooter. Just think of the damage I'll be able to do to someone with that puppy! And I can double it if I hold the cane while driving the scooter. No one is safe!

I'm not saying that it doesn't hurt that these people have disappeared from my life or some of the ones who have stayed look at me differently. I'm just hoping that if I keep showing them that I'm still here, they'll get it. And the ones that are gone, I guess they were in my life as long as they were supposed to be, right?

At Everyone Here is Jim Dandy, we find Cure Or Curse, Part II
Let me explain.

Yesterday I wrote of the built-in caveat afforded by MS to the MS sufferer, which goes something like this:

I would really like to rake up those leaves in the yard, but the MS fatigue has just totally wiped me out today. Perhaps I’ll feel better tomorrow (or maybe it will rain and render the idea moot anyway).

I would really love to work overtime for the next five days, but my body simply will not cooperate. As a matter of fact, I need some time off (and, btw, you’re required by law to give it to me). Damn MS!

Honey, I absolutely intended to take your car to the DMV and to stop by the bank and to pick up those things you wanted at the craft shop, but I just simply forgot. It all just fell through a hole in my brain.


You see?

Now have I ever used my disease in such an insincere and dishonorable manner? Of course not. God forbid. I’m just saying.

The thing is, there is really no need for dishonesty, for the conditions referred to above—fatigue, exhaustion, confusion, limitation—are baseline with MS, always present. These are the things we struggle daily and hourly against. We may sometimes feel a bit better (in fits and starts, anyway), and we may sometimes feel a bit worse. Sometimes we feel a lot worse.

We may be slow, lazy, and stupid, but at least we have a good excuse for it.

But, of course, people don’t like excuses (when they are, that is, the excuses of other people), nor do we who have MS like excuses, even our own. We make choices on a daily basis whether to give in to our illness, and thus end up feeling guilty and worthless, or whether to press on against the increasing solidity of the wall thrown up in our path by the symptoms which define our disease.

We have, to begin with, our own expectations. As healthy, non-diseased people, we were used to coming at least somewhere near to satisfying our own expectations. Now, with MS, what we expect from ourselves has not changed, but the ability, or anything like it, to live up our expectations has deteriorated quite significantly (kind of like the present economic situation in the US). It would be nice if our investments could reach anticipated goals, as they used to do, but the fact is that the bank is broke, the market has crashed, and our resources are sadly diminished.

The first rule of having to disappoint others is that this comes only after disappointing ourselves.

This is the key most often overlooked by those who do not have our disease. Often I find myself wishing that people would think this through a little more completely.

What, are we happy with being lazy, happy with being weak, happy with being exhausted, happy with being stupid?

Think again, right?

Please try to remember me as I was before. If I seem different now from what I was then, please ask yourself what happened in between. And believe me when I tell you that I'm trying, and that I am trying much harder now than I would have then.


This concludes the 23rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 27, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, November 24, 2008.

Thank you.
Comments for this post.


Sunday, October 26, 2008

Carnival of MS Bloggers #22 - Election Edition

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

Election Edition

Ushering our Daughters into the White House
from Breaking the Dress Code

One of the most memorable things that was said during the campaigning this year was when Hillary was speaking at the convention and she said that her mother was born before women had the right to vote but that this year her daughter had voted for her mother for President. That really struck a cord for me. We’ve come so far and we’re getting so close. Puddin’ and I early voted earlier in the week, and in four years we’ll go again and take FuzzyHead with us. This is one of the many traditions that I’m proud to be passing down to my daughters.




While I don't agree on all issues with Senator Obama; I agree on most. He has my vote because he is cool, calm, and collected. THAT is the hand I want shaking hands with our allies, reaching out to our enemies, saluting our troops, holding our nuclear weapon codes, and raised in oath to carry out the duties of the President of the United States of America.


Political Signs
by Serina

I’ve seen McCain/Palin Signs around, and while they definately aren’t my choice, I would never physically ever take someone’s sign out of their yard, or do anything to disfigure it. The beauty of this country is that we have freedom of speech and the freedom to express our opinions, and everyone is allowed their opinion.

That being said, I have seen a few different signs around town that have been disfigured.. and I kind of wonder what “Political Sign” that the disfigurement represents. Personally I would not want to be part of a group that did that sort of thing. I hope its not a “Sign” of our times, or a “Sign” that people think they did something cool by defacing other’s property. All it does when I see that kind of thing, is make me think of what a small mind the person who did it must have…


Palin Campaign Rally 
by Word Salads

This is the Palin Rally we all attended early Monday morning! Here is Sarah and Piper, they were only a few feet from us!

Whoo hooo!

My first Rally!!!!


Hank Williams, Jr. reached out and shook my hand! WHOOT!



Your vote for McCain is a vote against me
says Nina at Planning the Unpredictable

My family and some friends read this blog so I urge those thinking about voting for McCain to think again. The Wall Street Journal had an article on Monday about McCain’s ideas on how to change the health insurance market. Here are the points made in the article:

McCain’s Plan

McCain’s health plan would cover 5 million Americans.
McCain’s health plan would cost 1.3 trillion dollars.

McCain wants less regulation, here is a direct quote from a paper he wrote:

"Opening up the health insurance market to more vigorous nationwide competition, as we have done over the last decade in banking, would provide more choices of innovative products less burdened by the worst excesses of state-based regulation."

McCain would start taxing your employer sponsored health insurance plan. Let’s say your company spends 10,000 a year on your health insurance. McCain would charge the employee income tax on that 10,000. The cause and effect of this is unknown but the belief is young, healthy employees would pass on the employer sponsored plan and go for a cheaper private plan. This would leave employers with older and high risk (me) employees on their plan. This might cause employers to end their health insurance plans due to high costs.

McCain’s solution for the above situation is to over a high risk plan for the broken (actually they already have this) but it is very pricey and the benefits are horrible. There is a good change my medication would NOT be covered under such plan.

McCain would over a tax credit to individuals of 2,500 and 5,000 for families in order to purchase private insurance. I have been self insured before and it was 400 a month with no drug coverage. I would NOT be able to afford the 2,000 a month for Copaxone. The chances of a private insurance company actually insuring me is pretty small anyway. Pre-existing conditions would prevent me from qualifying. I probably have 2-3 different conditions… obesity, MS and thyroid issues.

Obama’s Plan

Obama’s health plan would cover 34 million Americans.
Obama’s health plan would cost 1.6 trillion dollars.

Obama’s plan would be regulated by the government.

He would create a new government-run plan as well as an “exchange” in which private companies would offer insurance to compete with the government plan. New rules would require that insurance companies provide coverage to everyone, at consistent prices, even those with existing ailments. Parents would be required to cover their children, and large employers would be required to cover their workers or pay a fine.

Obama’s plan would regulate the benefits so that minimum standard would be set up. Additional benefits would be offered at a higher premium.

Obama’s plan would most likely require companies to offer these benefits to their employees.

Summary

Are either plan perfect? No, of course not. Is Obama’s plan a step in the right direction? YES! McCain’s is going in the WRONG direction! The tax to the health insurance benefit will effect millions of American families that can’t afford it. The cost of McCain’s plan will keep increasing along with the number of uninsured. Yes, it’s pricey but everyone should be able to see a doctor and have basic coverage. That is why I am voting for Obama.





Because we have universal health care in this country we often don't think about what an illness can do to families financially. This is much more evident in the US but it does affect Canadians as well.

My mother was quite ill when she was pregnant with me. I wasn't a very good guest apparently. As a result of not being able to keep anything down and the threat of miscarriage a few times, when mom went into labour, the specialists were called in to help with the delivery and to care for what they thought was to be a tiny baby. The minute I was born, they wheeled the incubator out of the room and the specialists all started to leave. Mom asked where everyone was going. She was told they weren't needed as I was big and healthy (and screaming), at 7 pounds, 14 ounces.

My father is fond of reminding me it took them 3 years to pay for my birth because of the precautions needed and the specialists required to be there. I never understood that statement until I was a teenager and learned about our health care system. Canada has only had universal health care since the mid '60s (I was born in '63). Yes, they had insurance, but that only covers so much. My parents have been adamant over the years that I have insurance for everything, and I do.

I have been a consumer of health care since before I was born. All the usual childhood diseases, tonsils came out at 10, occasional trips to emergency for sprains, stitches, etc., regular doctor visits (they now call them "well woman" visits instead of paps), irregular doctor visits for severe colds or flus, MS onset and diagnosis and most recently my surgery for ovarian cysts (I can't imagine the costs associated with that whole experience).

If I added the costs of my health care together, I'm sure I'd be at the million dollar mark by now. But it has basically only cost me parking. And the occasional over the counter medicine.

When the MS diagnosis came along, I signed up for the Avonex drug study. For the duration of the study, the drug company, Avonex was going to cover the costs associated with the study: MRIs, blood work, etc. That was for almost two years. Then after the study, my insurance at work covered the prescription. But it would only do so for two years. This was in the midst of lobbying the various provincial governments to cover the enormous expense of the DMDs. Nova Scotia came on board with the plan around that time along with New Brunswick a few years later and eventually Newfoundland and Labrador. The rest of the country had already covered the drugs.

I get my prescription for Avonex filled every three months. I call the hospital pharmacy, give them my ID number and go pick it up the next day. They send me a bill for $9.54 for "dispensing fees" or some such thing and that's it. So for about $40 a year and parking I get Avonex. In September it will be 9 years that I've been on this drug. Since diagnosis I haven't missed any work because of MS. I have worked full time for the past 8 years (I was part time for several years before that), volunteered, and in general contributed to society (and to the government coffers).

A lot of folks complain about the government's take of income tax. I understand their frustration as I used to be one of them. But not now. I know why I pay taxes and my health is to show for it. I also sock away as much money as I can for retirement because I know that my retirement may one day be forced on me because of the MS.

I have repeatedly said over the years that I am one lucky duck. Not everyone can say that. Some folks may not be working full time or have full health coverage for other prescriptions or they may not be working at all. They may not be living where they want because of financial strains. Maybe they were the sole breadwinner before disability and can now no longer afford to look after their families the way they had been. Whatever the case, even in Canada, getting sick can cause great financial hardship, though it may not be because of the cost of the actual health care.

The Wookie moved to Canada from southern California when he was a teenager. His father (now semi retired) became a professor at one of the universities here. A few years after they had moved here, the Wookie's youngest brother was diagnosed with testicular cancer. Sadly, it was discovered too late and he passed away, but not before undergoing surgery and treatment. Both parents were working professionals but admitted that if they had still been in the US, the brother's medical care would have bankrupted them.

We have wonderful care in this country, wonderful doctors, and wonderful facilities. We also have problems with our medical system that we're trying to work out. The biggest complaint people have is wait times for tests or to see specialists. If your condition is emergent you will be seen and assessed quickly. If it turns out that you don't need emergent treatment, well, you'll wait...

Over the past several years I have watched walk-in medical clinics open up to help ease the strain on emergency departments. There is a shortage of family doctors and as a result, longer waits to see one even if you have one. That's part of what was driving folks to the EDs. The other part is that many people aren't proactive enough with their health, engaging in risky behaviour, not following doctors' advice , that sort of thing. The government and our doctors are not responsible for our health. We are. And we have to educate ourselves about...ourselves. We must become more knowledgeable about our health, we must lead healthier lives, and we must not take for granted the great things we already have.

S.


This concludes the 22nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 6, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 4, 2008.

Thank you.
Comments for this post.

Thursday, October 9, 2008

Carnival of MS Bloggers #21

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


Daily OM 
by Herrad

You may jump to conclusions today when interacting with others,
especially if you are assessing your exchanges from an emotional or biased point of view.

Perhaps you are feeling suspicious of other people's motives
or are making assumptions about how you're being received.

If this is the case for you today, it may be because your mind
is busy referencing the past and compelling you to get stuck in projections.

Consider focusing your attention on the present moment instead.

Paying attention to what's really happening, rather than getting mired in mind chatter,
can help you to think clearly and rationally so you can form appropriate conclusions.

Staying present allows us to process information rationally
during our interactions with people.

Being in the moment frees us of the mind's tendency
to dip into the past or jump ahead into an unknown future.

We can listen attentively and take what we see and hear for what it is in its own context.

The objectivity this affords us allows us to come to more pertinent conclusions.

We can also respond to what's in front of us rather than
react from past experiences, our fears, or conditioning.

Stay present and absorb what is happening to you right now,
and you will be able to honestly assess your situation
and draw more accurate conclusions.


In a post which made me laugh outloud, Mandi of Anatomy of Restlessness shares  
An open letter to Acme Syringe.
Dear Acme Syringe Company:

I am writing to tell you that I have used your syringes for years, and I would like to ask you for a syringe sponsorship. I believe that I have excellent qualifications, and I will be a good representative of your company. A far better representative than the folks who abuse your syringes and use them multiple times to inject illegal substances. Attached is my syringe resume:

Allergies
One round of allergy shots 1x a week for 3 years
One round of 2 allergy shots 2x a week for another 3 years
4 skin tests, with about 60 needle pricks each (back and forearms)

Multiple Sclerosis (this is where it gets exciting)
Innumerable blood draws
almost 25 days of infusion with Solu-Medrol and IVIG
spinal tap (this one requires several little needles for numbing and a few BIG needles for drawing cerebro-spinal fluid)
injections of interferon every other day forever and ever
B12 shot

Thyroid
biopsy with several needles
more blood draw

Diabetes
I don't have diabetes, but I would definitely use your syringes if I were to get it.

Thank you so much for your time to consider my request. Please feel free to contact me with any questions or comments.

Sincerely,
Mandi

ps: I can definitely get you lots of photos of me wearing a sports bra in extreme locations using your syringes.


Hey - DID YOU KNOW MONTEL WILLAMS HAS THAT? asks Bald Ben.

Would the real Bald Ben please stand up......

I never much thought of myself as a "blog person". Sitting here writing some sort of blather about myself for others to read never really seemed of much interest to me. Then my wife got pregnant. One might ask, "Hmm, how does your wife getting pregnant lead you to blogging? I would think you would have a lot more to think about?"

Your question would be a good one, albeit a little short sided, but a good one nonetheless.
You see, my wife wasn't only pregnant with one baby, but she was pregnant with two babies! Yep twins. This as I have been known to say is proof there is a God and he has a very dark and wicked sense of humor.

Picture it: It's a lovely day in heaven. Large white billowy clouds, soft harp music in the air, well manicured lawns, you know....heaven. Standing by the pearly white gates, God, calls all his buddies around, "Buddha, Moses, Vishnu, Jesus get over here." As they gather they realize that God has got a real rip snorter and He can barely hold back his laughter.
Now, God has been known to tell a good yuke from time to time, (i.e.=2 0floods, pestilence, duck billed platypus) but if he already can't contain himself this has got to be good. "Wait till you see this," almost bursting in hilarity, "See that Bald guy down there?"
"Yeah" They reply choir like.

God bellows out," allakazam!"

ZAP!

Bald Ben's got MS.

God is rolling. He almost starts a thunder storm he is laughing so hard.

The other deities look at each other a bit confused. You see, Buddha never understood this whole incurable disease bit. He's more of a knock, knock joke guy.

Knock, knock…
Who's there?
Buddha.
Buddha who?
Don't cry, it's just me the Enlightened One…..

And Moses was still trying to figure out how the Jews, after thousands of years of persecution, were supposed to be the chosen people. Jesus, being the savior and all, meekly taps God on his great big omnipresent shoulder and says, "Dad, ummm, that wasn't really that funny." God, still laughing, eyes his eternal Son and says, "Wait for it, wait for it...."

Another allakazam!

ZAP! Bald Ben is now the father of twin boys. All the deities break down in uncontrollable laughter at the great cosmic joke that was just played on the poor kid who lost his hair when he was 16. If you listen real close, you can still hear their eternal mirth.

But I digress, I started the family blog (It's linked to on the left20there. Two babies, one Bald guy, and a woman who can't tell the difference: a love story.) Simply because I was feeling a bit lazy and antisocial. "Hold the phone," I hear you say, "Lazy and Antisocial? Blogging can be a tough hobbie, and it ostensibly connects you to thousands of people at one time."

Ahh, you are right. If done with a little bit of heart and elbow grease blogging can be a full time job. However I am not looking for anything permanent thanks, just a little part time thing on the side will do just fine. The laziness and antisocial behavior came out of the fact that I didn't feel like having to call every person we knew with every detail of every doctor appointment, answering the same questions ad nauseum. Oddly enough despite the blog, I had to call every person we knew with every detail of every doctor appointment, answering the same questions ad nauseum.

However something odd happened along the way,

"Did you step in Dog poop?"

For the answer to this question AND MUCH MORE, visit Bald Ben who says, "...I will not hide. I am Bald Ben. My view points, my thoughts, my opinions are all free for the taking. I stand behind what I say, that's why I say it. Otherwise this would all be a colossal waste of time."

This concludes the 21st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 23, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 21, 2008.

Thank you.
Comments for this post.

Thursday, September 25, 2008

Carnival of MS Bloggers #20 - The Invincibility Edition

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

"Strength and Invincibility"

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

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

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

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

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

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

My son climbs up and looks over the other side.

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

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

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

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

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

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

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

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

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

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

Oh. My. God.

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

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

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

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

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

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

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

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

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

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

or

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

or

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

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

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

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

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

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

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

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

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

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

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

This concludes the 20th edition of the Carnival.

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

Thank you.
Comments for this post.


Thursday, September 11, 2008

Carnival of MS Bloggers #19

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

"Please Be Gentle Here"


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

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

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

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

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

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


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

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

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

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

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

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


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

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

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

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

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


Update on Fundraising for Herrad's Cushion.

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

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

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


THANK YOU VERY MUCH FOR YOUR DONATION!!!!


This concludes the 19th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 25, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 23, 2008.

Thank you.
Comments for this post.

Thursday, August 28, 2008

Carnival of MS Bloggers #18 - Illusion Edition

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

"Loved Ones, Nuances, and Illusions"


Tricia of Middle Age Mania shares what is like to be
"Married to the MonSter..."

When I met my husband in December of 1997 he was already diagnosed with MS - had been on Avonex for 7 months and had recovered from his first diagnosed MS attack which was a doozy that hospitalized him for about a week. He was handsome, had a runners body still, muscular thighs and six pack abs. I was intimidated by how "in shape" he seemed.

I knew about MS - a close friend of the family had a severe fast progressing case and she went from being fine to being in a wheelchair and then finally to being unable to breathe on her own within a decade. It was pretty scary stuff. I also knew a friend's mom who sometimes walked with a limp when over tired but was fine most of the time. This was the extent of my knowledge about MS when I met him.

There were those who warned me about getting involved with someone with MS. My family was concerned. Friends worried that I was setting myself up for heartbreak and maybe I was but I fell in love and I took the risk.

My husband has R/R (relapsing remitting) MS - he has had a lot of relapses in the last decade but many times his symptoms would reverse themselves after a course of steroids. So the day he woke up unable to control his left leg at all and had to use a walker just to get around? Well 3 weeks later he was walking like nothing ever happened. For us MS was a day to day reality in his energy level but the real serious stuff was usually a passing inconvenience.

The MS was sometimes at the forefront and a very real reason why he could not do something or go somewhere, but many times it was an excuse too. I don't want to go I have a headache. No way to prove or disprove that, I take him at his word. Sometimes he would go out in crazy heat to do things he wanted to do knowing it would drain him and other times he'd beg off due to heat when it really wasn't hot because he just doesn't want to. I find that MS makes a nice tidy excuse to get out of things and yet I never want to accuse him of that because what if this time I'm wrong?

I have never known my marriage without MS as I said above but I did know it before MS was there in our faces daily changing everything. I miss the times when the MS was something that boiled up occasionally and then went back to a slow simmer. About 2 years ago this labor day he had the start of an exacerbation - he had the steroids to halt it but this time they didn't work. He had been on Betaserone for nearly 4 years at this point but it no longer seemed to be helping. He was not seeing a specialist and his general neurologist was way out of his element here. But he didn't admit defeat and send hubby to a specialist, he kept puttering around talking about new possible therapies but not doing anything about it. Finally after almost a year of indecision and inaction on his neurologists part my husband was fed up and asked his primary care physician for a referral back to a specialist. This doctor immediately started the process to get him on Tysabri and took him off Betaserone. He sent him to a physiotherapist to try and regain some of the lost function but it seems that it's gone for good.

My handsome husband with the runner's build has lost about 25lbs of muscle over the last decade. His thighs are thin and much weaker, his abs are no longer rippling. He has a drop foot on the left, no balance at all, and a seriously unbalanced and uneven gait. He can only walk a few minutes at a time before he needs to rest and he staggers as he goes. I admire his resolve to not give up and sit down in a chair and just let it go. I also wonder at times WHY he fights so hard - use a chair sometimes it is just to save your strength. But he is a stubborn Italian man and give up is not in his vocabulary.

He has been on Tysabri for 8 months now. His doctor says he is showing improvement in involuntary reactions. I wish he would show improvements in balance and walking ability. He doesn't feel like he's getting better. I do think his memory loss is better. For awhile he couldn't remember from day to day things that happened or people said. And he wouldn't admit it was him instead accusing the other person of not having told him. This rarely happens these days - if that is the Tysabri I do thank it for that much at least.

I feel like an outsider sometimes. I know more about the disease and treatment than he does because I take the time to educate myself. But no matter how much I know the one thing I can never know is what it feels like, or how it makes him feel. I know how it makes me feel - scared, helpless, alone - and I don't have the disease.

I love my husband and I HATE what this disease has taken from him and by proxy from me. He is still R/R and there is still a chance he could turn around and start getting better but I fear that the best we can hope from the Tysabri is to stop the disease from taking any more. Because it has already taken so much it just doesn't seem like enough. I worry that he will cross over and become secondary progressive, if this happens there is no approved treatment and the insurance would no longer pay for Tysabri. At that point it becomes a wait and see game as in "wait until he dies" basically.

For the overwhelming majority of people with MS it is not a life threatening disease. I worry all the time that the man I married is not in the majority. I keep that worry to myself.


Amy of MS Life of Learning shares an internal observation
in "Silent Clammor"

Today is Wednesday, August 13th. As per usual I commuted in to NYC via the train across the street from my house. Every weekday that I'm feeling well plays out roughly the same way. I walk across the street with stick at my side and my far too heavy backpack keeping me grounded. Exchange pleasantries with the co-commuters while we wait. Depending on the train I find my place- today it is a long car behind the engine, 2nd seat on the left. Prop stick against the wall, assume commuter position.

From the outside looking in, that position is a static one, assumed by the quiet masses. For me it is where the action starts. Depending on that day's distraction -be it the Science Times, the New Yorker, and lately any book by Haruku Murakami- there is an ebb and flow between the read, the thoughts of the moment and the cacophony of the commutation orchestra. All this input is punctuated with the pull of sleep- a not-too-distant memory from a few hours earlier.

The code of silence may surprise the spectator who has never experienced the mass transit commute into a big city. It is a satisfying start to the work day. A collective moment honored by all, and interrupted only by the call for tickets and the staccato of the hole-puncher making its way through the car.

This is the time-in between the quiet clamor of the daily migration, that I, along side hundreds with whom I share the experience, start my monologue for Wednesday, August 13th. Today I feel different. I woke up feeling the dizziness I have felt since December, but as soon as I transitioned from front lawn to platform, I knew this commute wouldn't be the same. While the details on the outside were identical to yesterday's, what was happening on a neuronic level was new. Something barely interpretable, but present none-the-less. Just to be sure I put it to the test. I added flourishes to the action walk up, walk down, walk across repeat. I try increasing my speed slightly and adding a rhythmic jump that I haven't known for some time.

So many take a stairway trip for granted. I've watched how effortless it is for most - not a second thought, never even grabbing the handrail. I haven't had that luxury since I was 20. But today, I added a little skip to my downward trend. Taking a moment to experience that minor change, and relish it later as I write- it's a nuance that excited me for what I might notice on the way home.
Wish me luck.



I'm sure by now you've all seen the famous optical illusion of the old woman/young woman in the above picture? You DO see both images, right? The old woman has a feather in her hat as does the young woman looking over/toward her right shoulder?? If not, keep staring at it...it will come to you...eventually.

I've decided Multiple Sclerosis is like an optical illusion...very little about the dayumed disease is truly visible, and yet we SEE the disease showing up in our every day lives via fatigue, pain, vertigo, visual changes, etc., because we are LIVING with it. All those nagging symptoms that remain most likely UNSEEN on MRI, blood work, or even physical exam are easily identified through the eyes of an MSer. But for those "outsiders" that just catch glimpses into an MSer's life, it is even more difficult to understand what they cannot "see".

I have a strange hope that if they just stare at us long enough (metaphorically speaking or not!), eventually their vision will adjust to what we MSers see on a daily basis...both the obvious and the hidden parts of this disease. It's just a late night thought...


Shauna of Bugs, Bikes Brains tells a story of Shakespeare, King Lear, and Illusions
When I got to university, conicidentally the same one my father attended, I chose to take sociology rather than English. I had had enough of trying to figure out what authors were alluding to. However, by my third year, I needed more electives to fulfill my degree requirements and I ended up taking a first year English course from a legendary prof, sometimes referred to as Snapper. I was heavily involved with campus radio at the time and he asked me to produce a radio play our class was going to write based on Gulliver's Travels. That was a blast. He also had us divided into groups to come up with a board game based on Beowulf. That was a lot of fun, too.

Strangely enough I ended up taking more English courses, including 20th Century American and British Lit from my own Dr. Phil and a drama seminar from Snapper. Snapper was so-called because of his extremely dry and quick wit. In the drama seminar we studied a number of plays dating from ancient Greek and Roman times to the 19th centruy. I admit I was lost during much of the seminar, just not able to see through to the deeper meaning of most of the plays. I guess I was too linear in my thinking at the time as my abstract thinking has improved with time.

I don't recall which Shakespeare play we looked at in that class, but the same week we were studying it, a Garfield cartoon appeared in the Sunday comics that made it all clear to me. I've done a brief inernet search and can't find the exact strip but the punchline was "Things are not always as they appear to be".

I had a brilliant moment of clarity. Suddenly, Othello, which I had seen at Neptune Theatre in Halifax in Grade 9, King Lear from Grade 12 and now my university Shakespeare play made complete sense. I took the comic strip to Snapper's office and placed it before him. "This is it, isn't it? This is what it's all about!" You'd think I had just won a Nobel Prize or Olympic medal, I was so proud. Snapper read the strip, nodded, and said, "That about sums it up".

Since then I have enjoyed a few Shakespeare plays, live, and movie versions. After watching Mel Gibson's Hamlet, I asked my mother to make me a cape like the one Mel wore in the movie. I wear it a couple of times a year on chilly fall and spring evenings with a huge, gorgeous, Scottish brooch on the shoulder to hold it in place.

Several years ago I was tutoring a friend's younger sister. This girl was extremely bright but was having difficulty in written communication. We were working on her writing skills for her English course in which they were studying Romeo and Juliet. She was able to identify scenes and acts to illustrate points her teacher had made, something I could never have done in a million years. While working with her, I let her in on the secret to Shakespeare.

Remember Three's Company? Every single episode revolved around a misunderstanding of some sort where things were never what they appeared to be.

My dad's father, my grandfather, gave my mother a copy of Shakespeare's complete works. It's a 100 year old, leather-bound book that now sits on my shelf. I rarely open it as I still find the language tedious to read and the internet makes it so much easier to look up a reference.

The whole point of this post, inspired by Linda at Brain Cheese, is that like Shakespeare's plays, MS offers up as its theme "Things are not always as they appear to be". Some of us are walking, talking, biking illusions. We have MS but don't appear to have anything wrong at all. Some of us have mental deficits that have resulted in having to retire from the workforce early. Some of us have physical deficits that belie the mental acuity we have maintained.

Looking at an MRI filled with lesions of the brain, one may conclude a severe disability. Or one lesion may lead to the conclusion of no disability or even symptoms. But we know that presence and number of lesions don't always correspond to disability. And that's why MS is an illusion, a Shakespeare play. We have lesions we want to be rid of, no matter the amount of damage they do. And that's why, like Lady MacBeth, our universal cry is "Out damn spot!"

S.


This concludes the 18th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 11, 2008. Please remember to submit a post (via  email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 9, 2008.

Thank you.
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