Thursday, March 13, 2008

Carnival of MS Bloggers #6 - A Country of Our Own

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

Diane of A Stellarlife bravely welcomes us to

One day in 1990 I suddenly moved to another country. Not knowing the spoken language, not familiar with the foods of choice, and knowing no one else who had ever been to this place; well, I was on my own. The country was called Multiple Sclerosis.

Knowing I was headed there or the island of a brain tumor, I was quite happy to have an MRI expose me to my new path. Winding through symptoms including numbness, foot drop, legal blindness, slurred speech, fingers to feet that stopped functioning, I settled, after 18 years into my current life with twists and turns more dramatic than any roller coaster, comfortably aboard a lift-chair with a 5 MPH power chair poised next to it. I was a long way from Indiana.

First I had to learn the language. MRI, ABC and sometimes RTN, NIH, CNS, RR, PT, OT, AFO, oh dear, hard to learn a new language as an adult, especially when the natives often speak in acronyms.

The cuisine took some getting used to as well: green tea, low fat, lots of fruits and vegetables, high fiber, water galore. Out were my trips to burger land, fried chicken and frozen TV dinners. Oh, and for dessert: stretching with yoga and a thick topping of meditation.

The political system is not that unusual. Doctors, Researchers, Therapists, Pharmacists, all adding their individual ideas for a better MS. We do not vote, but we visit them and choose which ones will represent our needs the best. Sometimes they exceed our expectations; sometimes they drift off point, leaving us adrift as well. Fundraising is ongoing and there never is enough money to deliver what we all want---a cure.

We need not feel alone though, for there are societies, associations, and many groups that offer power in numbers. Thank goodness the Internet thrives in this country and offers engines to take us to many helpful sites. And since any minuscule point on any tiny nerve from the top of our heads to the tips of our toes can be compromised at each moment in time, well, no two bodies ever experience exactly the same physical mishaps; nor, for the same length of time. No wonder the first pilgrims to this country were considered insane.

I guess the most difficult obstacle I had to learn to deal with was the uncertainly of life here. Oh, sure, in Indiana we had 10’ below and snow that stayed for months. Spring would bring tornadoes and the summer brought humidity with 90’ temps that were unbearable. “Just wait and the weather will change,” they used to say; actually that was said in my second home-Seattle, Washington as well. And the same attitude is true with MS. Unpredictable: the concept that defines MS and dismantles the goal-oriented planner like me.

Do not bother looking for a visitor’s bureau; none exists, probably due to having to update brochures so often. (The cause is this; no it’s not. Don’t eat dairy; dairy is fine. It is not inherited; yes it is. This drug is best; no this one is better.) Besides, who would want to visit here? Better to lose your money in Vegas than lose your mind here. Our brains are shrinking, atrophy of limbs sneaks up on us. No beaches for sunbathing or saunas for visitors, the heat will slow our nerve signals to a virtual stop.

Will I fall today or trip over my unresponsive foot? How much will be seen clearly today and will I have the strength to look around? Numbness, tingling, pain and spasticity are always nearby. Weakness, depression, constant worries about the “f” word lurk around every boarded up tourist attraction.

F for future, the fear one dare not say aloud. Jobs are so difficult to keep here. Money is always a concern and no insurance will cover our “pre-existing condition.”

So I decided to embrace my new country, “go with the flow,” “chill out,” “take it one day at a time.” After all, this is my home now. Each day is a new adventure, a new word to learn, a new fellow citizen to meet, a new mountain to climb. Yes, MS is my new home. I embrace the new person I have become and I wouldn’t live anywhere else. Headed this way? Be brave, it is a great adventure.

Next up, meet some of the fabulous residents of MS Country.

Jenn shares some good news, "in the 10 months since my last MRI, there are NO new lesions!!!"
We need to find out what causes this thing, and though we have figured out how to slow the progression, our medical best is still a failure. The disease will still progress. We've come a long way baby, and I am grateful, but we have some exciting challenges still ahead. MS does not discriminate. You can be a young healthy fine woman one day as I was, and the next day my vision was severely decreased thanks to Optic Neuritis, and my world was shaken. I am glad to say that I do not identify myself with MS, IT is not ME. I don't hate it or put any negative energy (that is draining!) toward it. I am just loving my body, and the gift of life, and the nature around me that God has blessed us and revealed Himself to us through. I would LOVE to think that I may be healed, yet I realize for most that does not happen.

The many gifts of life don't always come with just one blessing or one challenge at a time. Often it's a mixed bag. Vicki takes time to relay the major life events of her past year - through a new relationship, strange symptoms, THE diagnosis, relapses, love, an engagement, and a literal moving of house and home.

"A year that has been so hard yet also so wonderfully good!"

It all started in January 2007, the 6th to be precise, when I met B for the first time in person for lunch in a pub. I talked the whole time and I think he only spoke to ask me what I wanted to drink!

So things went from there, we met for dinner and then again for lunch and we carried on. At the end of January I got a strange feeling in my right hand, my little finger and finger next to it were feeling slightly numb. I put this down to having driven a strange vehicle the weekend before. After that the numbness moved to my feet and lower legs and gradually moved on up. To begin with it wasn’t bad. I could feel almost normally, then one morning after a hard couple of shifts I woke up with much less feeling all the way from my feet to my bum and poor balance.

I thought back to two periods of numbness to the left side of my torso which included an episode of a very strange sensation down my spine. I had decided that week that I was not safe doing my job as an ambulance technician and therefore made a Drs appointment. I was thinking referral to an osteopath/ chiropractor for my back but no referral to a neurologist.

Throughout all of this B was there for me. I gave him the opportunity to get out of the relationship on the day I was diagnosed but he said no. He had told me he loved me the month or so before; I had said it back some time after. Having never said I love you to a boyfriend before it was a bit of a scary and unknown quantity! His view was that you never know what is ahead and lets just get on with things!

B and I got engaged on the 5th January 2008 and we are in the process of moving house. He doesn’t seem at all phased by any of what has happened over the last year or so and says he loves me more and more.

So as I said at the beginning of this post, it’s been a horrible year it really has but I wouldn’t go back. I’ll take B and the MS rather than not having either. May sound strange but that’s how I feel!
And do take the time to read the comments which have been left for Vicki. You will find that love often eclipses the uncertainties of life with multiple sclerosis in this new country of ours.

"Anyone who has never made a mistake has never tried anything new." - Albert Einstein

Right on. This is what I've been trying to get across to my son Adrian. He's 9 and learning to read, write, spell and process life with dyslexia. He wants so badly to be perfect, but he can't. So I've been talking to him about how it's ok to not get things right all the time. And it's ok to feel bad about it. The crappy feelings will go away. Keep practicing. As my friend Paul's wife Laura says "Practice makes pretty good!"

Read Trrish's inspiring post at These Pretzels are Making Me Thirsty.

Sharing some great MS moments, newly-diagnosed Kim of Sunshine and Moonlight is reminded that having M.S. can have its benefits. In It's a Good Thing I Have M.S.!, she writes of her comical weekend snow-bound in Northwestern Pennsylvania.

Having avoided the bathtub at all costs since her diagnosis, Kim tells of making nice with her tub in My Bathtub Didn't Eat Me! and introduces what might be the new national anthem for M.S. patients.

And in the true spirit of comedian Bill Engvall, the land of Sunshine and Moonlight explores Here's Your Sign moments for M.S. patients.

Spying the victim of the dreaded Multiple Sclerosis Back Scars on Days of our Lives, the Queen of Mediocretia* of Suburbia says She Looks Great!

Back in '94, five days after my elective insurance started (victorious smug snort of self-satisfaction) I woke up and my feet were asleep. Oh, and I felt like my guts were super-glued together.

"Like a tight band is around your torso?" asked the neurologist I saw seven days after the insurance started.

"Why, yes, it feels just like that!" (Torso band. Classic. Textbook. So unimaginative.)

This all happened in less than a week. I went on a cruise, returned to an MRI and I was back on the medical Fast Track. The secret to the fast track? Have something so obvious even the receptionist can diagnose it.

"Hmm," grunted the neurologist, "I think you might have a mild case of MS."

"Hunh." I grunted in return, as these thoughts went through my head, in this order.

Curious to know what The Queen thought? What exactly are multiple sclerosis back scars? Who has them? And should you ask your neurologist about them?

For these and others answers to the mysteries of our new land, turn to In Which We Mock Our Illness, brought to you by Ellen, The Queen herself.

And finally, a mystery of a different nature...
"Nervonic Acid...Where Did It Go?"
I love a mystery. Don't you?
It brings out my inner Nancy Drew. I feel way more skilled than her though with my statistical knowledge (I teach statistics). So I'm more like a well designed character in a classic Agatha Christie novel....a curious statistician if you like ;)
So, the mystery that unfolded to me in the last year was one that erupted when I discovered the possible death of nervonic acid from a) our food chain and b) our food information chain.
Rather than revealing clues to the mystery as presented by Orla of Great Mastications, I recommend you read her inquiries into the significance of nervonic acid, a monounsaturated omega-9 fatty acid with a molecular structure of C24H46O2 which contains a C=C double bond in the w-9 position.

This concludes the brief tour of our new land, "A Country Called Multiple Sclerosis." Tune in next time...
But WAIT...that's not ALL!!!
We've also got some of our very own grass-roots media forces.

Stuart Schlossman of "Stu’s Views and MS Related News" msviewsandrelatednews publishes an e-Newsletter which is estimated to reach approximately 4000 people per week.
"With time on my hands, I wanted to provide Multiple Sclerosis information to and for, anybody seeking to be empowered with MS information. Remember please that Knowledge is Power and I want all whose lives are touched by MS, to have this Empowerment."

And Charles A. Rovira who is the one and only podcaster - that's like internet radio on demand for those who are unfamiliar - to focus on multiple sclerosis, MSers and creating a positive community of togetherness.
"I have a few hundred shows under my belt. You can pick up the last 100 shows on iTunes and play it on an iPod or other MP3 player. They are also available at MSB Podshow or there is even a player on the page itself at"

Please do go check these guys out.

The next Carnival of MS Bloggers will be hosted here on March 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 Tuesday, March 25, 2008.

Thank you.
Comments for this post.


  1. Wow... great list and wonderful post Lisa. Thanks putting this together and make this community grow more and bond stronger.

    I will be doing some reading today and this week.


  2. i need to catch up! i have been so out of it forgive me. i concur with jim...wonderful the way you put this all together. i hope a lot of people are helping so many. i am wondering if you could tell folks on the MS forums about your carnival...there seem to be so many people who use forums and boards.

  3. Excellent collection Lisa. I echo Jim's thoughts and am amazed at how we're coming together.


    Email me if you would like to purchase Nervonic Acid mixed with herbs for $50/bottle. As soon as possible I will have available pure Nervonic Acid capsules with no other ingredients. NA is not easily found, so I am now ordering it by the case from overseas for myself and to re-sell at a fair price to others with MS or nervous system conditions who want to take it or try to prevent these conditions in their kids.

    As soon as I have enough funds from sales of this mixed NA product, pre-orders, or investors, I will be able to complete the special order that this company will make for me of pure Nervonic Acid capsules with no other ingredients. This will be the first and only source of pure NA in the nation for consumers. I have to order a minimum of 10,000 capsules of NA so they will run the bottling batch, about the amount for 30 people with MS to take it for 1 year (I plan on ordering a year's supply for myself and refrigerating it - BTW I have MS since '04 and live in the Pacific NW where we have the dubious distinction of having the highest rate of MS in the nation).

    Anyone you know with formula fed babies, they need to add this to the formula to prevent thin myelin, especially if any nervous system conditions such as MS, schizophrenia, or learning disorders run in the family. Moms can take it themselves if they are breastfeeding, pregant or planning on becoming pregnant. Anyone who has kids under the age of 5, there is still time to give them supplements. Anyone who's kids have ADD can give it to them. Any one with family or friends who suffer from any condition of the brain or nervous system, such as mental illness like bipolar, schizophrenia; learning disorders, memory problems and senility in aging, can benefit from NA. The research is out there, just google.

    My email is I keep my paypal under this email and will have a shipment of the mixed product in about 2 weeks. Now taking orders for the mixed NA product and pre-orders for the pure NA product as well as any investors who will help make that happen sooner.

    Thanks and please spread the word for the only supplement source of NA available in the US!

    Your fellow MS'er,
    Marla K. Jones
    Seattle, WA

  5. FYI.

    Marla found us by googling 'nervonic acid mental illness' and I doubt she read Orla's post.

    Please, cautious and due diligence are required in our current culture of salesmen ready to take advantage of folks in need.

    I do not know if Marla is for real and cannot verify her claims.


  6. This comment has been removed by the author.

  7. Hats off to you, M' dear! Such an inspiring column/post...groovin' on your spirit.

    Linda D. in Seattle

  8. Wow Lisa!!

    I am honoured to be part of your Carnival this week and have enjoyed the wonderful company I'm in. Can I say thank-you again?

    Marla Jones is for real and she did not find this page with the google search you mentioned. She has read my post and has directly emailed me because we are both on the ms-cured yahoo group.

    I have interacted with Marla via email and I believe her to be a sincere person although I have told her that I am not interested in pursuing nervonic acid supplements that are made in China.

    I do not believe that there is any miracle cure for MS.

    I do believe that diet changes are a method that has been ignored by the MS medical establishment because they are very hard to test. Very hard.

    Everybody needs to eat. I am choosing to change that aspect of my life based on the nutritional research that has been carried out in the last few years. That and the fact that I have no insurance made my own options quite limited when I was first diagnosed. Talking with MS society people also frightened me into the course I have pursued (many people were taking 10-20 medications regularly).

    Will that 'cure' MS for me or anyone else? I don't have an answer to that and I am not pursuing my diet choices for that reason. I am merely hoping to prevent a wheelchair.

    All that are here can empathize with that hope.

    Namasté to all...even to Stuart Schlossman who has spammed me twice due to your carnival and has no opt out option from his spam.