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

"A Country Called Multiple Sclerosis"

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 MSBPodcast.com."

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.
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