The Excitement Builds

Ask me if I'm excited. OK, then, I'll just tell you I'm excited. Two things happened this weekend. The first is that I met Cranky Baby in person. She's just as foul tempered looking in person as she is on the web. But her mom is a sweetheart and she's excited about us getting together to do some fundraising for the Bike tour as well as spreading awareness of MS to a larger community. Cranky Baby will come with me from time to time on my forays into the wilds on Halifax trails as I train and we'll be bringing you pics of our outings. I know you're thrilled to hear that.

The other thing that happened is that I sent an e-mail to the publisher of a regional e-zine for cyclists in Atlantic Canada asking if I could publicize the Bike Tour and solicit donations through the e-zine. He wrote back and asked if I would write a monthly column about the event, my cycling experiences, and recreational cycling as an MSer. Ask me if I was excited. OK, then, I'll just......well, you get the picture. If it weren't for MS, I wouldn't be cycling, I wouldn't be involved in the Sackville Rivers Association (which is another post coming soon), and I wouldn't be involved with Nova Scotia Rails to Trails. Which means I wouldn't be finding as many nifty 6-legged specimens as I have found on my journeys. Which means you wouldn't get a chance to see the cool pics. So it's a relatively good thing I have MS.

S.

Connections

Warning: Long post ahead. Go make a cup of tea before you sit down to this.

I own a self winding watch that doesn't. Last year I took it to a professional for cleaning and a tune up. He got it up and running again, I took it home, wore it for a day and it stopped. I put it in my purse to take back, and when I pulled it out to show him, it was working again. I put it on and a couple of hours later it stopped again. I took it back and was informed that sometimes self winding watches need actual physical winding.

I was driving with my mother one day when she noticed a knocking sound in the engine of my car. "You should get that checked out", she said. So I take it in to the mechanic and explain about the noise. "When does it make the noise?" he asked. "When my mom's in the car", was my reply. (You should have seen the look he gave me; no sense of humor) He got in the car with me and we took it for a spin. Of course there was no sound.

I have problems with electronic equipment at work. One day I crashed 3 different computers, one just by sitting down next to it. For the longest time I was having anomalous things happen when I was on the air...computer screens going dark, sound monitors in the control room turning themselves off, and the channel for the microphone turning itself off (usually while in the middle of speaking). It turns out I seem to have an inordinate amount of static electricity build-up in my body and simply waving my hand over the board that controls everything on air can turn off a channel.

For a while, it seemed that every time an alarm sounded at work (to indicate we were off air), it was my fault somehow. In fact, the head tech guy asked me one day if I had been in Newfoundland over the weekend (another province over where we have a sister station). I said no and asked him why. "Because the transmitter burned down", he said.

Over the years I have collected a number of these stories. Maybe they happen with the same frequency for other people but they don't take note of them. Maybe I just notice them because I see connections everywhere. And that is actually the point of this post, if you're still with me.

I have been contemplating doing a post on the "connectedness" of things. I can take almost any subject and find a way to relate it to myself. That's how I learn. but while researching "coincidence" and "synchronicity" I came across the Pauli Effect:
a tongue-in-cheek reference to the apparently mysterious failure of technical equipment in the presence of certain people, particularly theoretical physicists. It is named after the Austrian theoretical physicist Wolfgang Pauli. The Pauli effect was named after his(Wolfgang Pauli) bizarre ability to break experimental equipment simply by being in the vicinity. Pauli himself was aware of his reputation, and delighted whenever the Pauli effect manifested.(from Wikipedia).

OMG!! There's a name for it! The engine sounds disappearing in the presence of a mechanic or the channels and monitors turning themselves off but never in the presence of a tech guy (until finally one day when one happened to be standing right behind me). It's the Pauli Effect.

How excited was I to learn about this? Over the moon doesn't even come close. It happens to other people, too! I'm not an idiot! I'm not jinxed! I was thrilled to make this discovery for a couple of reasons. First, it meant that this phenomena is not the universe trying to get me. Second, it turns out that this guy Pauli became a patient and then friend of psychotherapist Carl Jung who's best known for his ideas of a collective unconscious and his theory of synchronicity.

Synchronicty! Aha! That's what I was looking for to begin with.

Coincidence is a noteworthy occurrence of two or more events or circumstances that don't have an obvious causal connection. For example, my co-worker Mary's birthday is February 28th. Her older sister Christine was a leap year baby. It would be more of a coincidence if they were both born on February 29th, but throughout their lives they have celebrated their birthdays together.

Synchronicity is also the occurrence of two or more events or circumstances that don't have an obvious causal connection, but they occur in a meaningful manner. My co-worker's sister, Christine, gave birth last week on February 29th! A leap year baby having a leap year baby! It's not unusual for women to give birth on their birthday, but to give birth on a birthday that only happens once every four years is...synchronous.

Over the years I have experienced this type of synchronicity many times. At university during my first year (1980), one of my biology lab partners was Grant, who hailed from Ontario, halfway across the country. I haven't seen him since we graduated in '84, but I met his uncle in 1998. His uncle is my neurologist.

Shortly after I was diagnosed I was at the local office of the MS Society and noticed a picture on the wall of a guy who had just finished his term as Pres of the Atlantic Division of the MS Society (or Chairman or some such). He was the brother of a former boyfriend.

Even the events surrounding my diagnosis were rather synchronous...I've blogged about it before: The Monkey's Paw and Insert Horseshoe Here.

I meet a lot of people in my line of work. Actually, I talk to more people than I meet, but some I do eventually meet face to face. One woman I talked to just before Christmas and I hit it off on the phone, then through e-mail, and finally in person. Kathy just seemed like good people. Turns out, she and I had a person in common, another MSer I knew through MS activities and who Kathy knew through a bible study they both belong to. Kathy and I and our respective significant others (Jane and John[aka Wookie]) got together for dinner a couple of weeks ago. Turns out Jane and a friend of mine from university ( a gazillion years ago) worked together until a few years ago.

I attended a university with a rather significant and recognizable school ring. Almost every social occassion I attend there is someone else there with the same ring. We instantly have a connection (even if it's just the rash that sometimes pops up under it). And even if there's no one else with that ring at the event, someone always comments on it to tell me their son or daughter or dad went there.

Last week I began putting on paper, so to speak, my ideas about coincidence, and doing some research on the subject while Lost was on TV. That is one interconnected show. Everyone is connected to everyone else even before they ended up on the island together. I realized after last night's episode that this is what attracts me to the show in the first place, and what keeps me getting sucked back in every time I aver to never watch it again. I am waiting for the resolution of how and why everyone is connected. I really want to know.

And when discussing this show with a co-worker and my upcoming post about coincidence, he said that with technology moving at the speed it is, it's no wonder the world is getting smaller. More and more connections are being made, even if it is on the internet. Kind of like pen pals, only faster.

So what has all this to do with MS? Simple really. I'm looking for the connections we MSers have with each other. And to do that I blog, I volunteer with the MS Society, and I raise funds for research. I also take part in studies relating to this disease because I have GOT to know HOW this disease works. MS is not a magic trick I can figure out or a mechanical device I can learn about. It is an as yet unsolvable logic puzzle. And everything I read, write, or research leads me a little closer to understanding.

I don't know why I have MS but I know what to do with it. And I promise to only use this power for good.

S.

A Lot of Link Love

This community of MS bloggers is really growing. You can see how much courtesy of Lisa over at Brass and Ivory.

MS Awareness, Blogging Friends, and a little Link Love

There are at least 137 MS Bloggers out there actively discussing whatever suits their fancy. Below you will find many of these suspects....wait... I mean lovely blogger friends who happen to have multiple sclerosis.

Remember how I mentioned a group project was in the works? Well here it is. As the founder of the Carnival of MS Bloggers, I'd like your help in spreading the word, and in doing so we will strengthen the bonds of our own little Multiple Sclerosis Blogging Web (and share some linkie love with each other). If you are not an MS Blogger, but are a regular reader here, please feel free to help spread the word too.

Here's what you do:

1. Copy the entirety of this post
2. Create a new post and paste this content
3. Visit 3 of the blogs listed below which you were unfamiliar
4. Leave a comment on their blog encouraging them to participate
5. Please add Brass and Ivory to your sidebar, if it's not already

New editions of the Carnival of MS Bloggers will be presented bi-weekly at Brass and Ivory. Previous editions will be are archived here and the button below has been revised to include the new link. Please update your sidebar.

Names of the Blogs - Name of Blogger (if known)

and # of posts in 2008 (as of 3/5)

9 Brand New MS Bloggers joined the blogosphere in 2008!!

New! Carole's MS Blog (Carole) 49
New! Great Mastications (Orla) 37
New! Movin' On with MS (Sammie) 26
New! Me, Myself and MS (Emma) 10
New! Being Ammey 8
New! Blogbuster (Daniel) 6
New! Etsy Crest (Shelby) 6
New! Serina's Blog 5
New! I'm Beating MS (Michael) 2

Most Prolific MS Blogger - so far in 2008!!

Jim's Deep Thoughts (Jim) 231

Top 10 Rather Prolific MS Bloggers - so far in 2008!!

A Stellarlife (Diane) 109
Multiple Synchronicities & Sclerosis (Merelyme) 90
Friday's Child 70
My Journey - Living Well with MS (Diana) 69
Sunshine and Moonlight (Kim) 65
The MonSter Ate My Branes! (Natalie) 65
Queen Mediocretia of Suburbia 60
Brass and Ivory (Lisa) 56
Brain Cheese (Linda) 52
Maybe I'm Just Lazy (Julie) 51

28 Moderately Prolific MS Bloggers - so far in 2008!!

Maggsbunny (Maggie) 48
Living with Multiple Sclerosis (TC) 47
MS My Way 43
Bugs, Bikes, Brains (Shauna) 39
Dancing with MS (Lazscott) 37
Trying to Catch My Breath 37
A Florida Journal (SwampAngel) 35
Now We Are Six (Tish) 33
Reality Check (Michael) 32
Access Denied (Herrad) 31
Multiple Sclerosis Blog (Charles of MSBpodcast.com) 30
MS Activist (NMSS) 29
Self-injecting Chinese Hamsters since 2007 27
Shirl's the Girl (Shirley) 27
Disabled Not Dead (Anne) 26
Life with MS (Trevis) 26
Living with MS (Blinders Off) 25
White Lightning Axiom - Redux (mdm) 25
Stevers! 23
Word Salads (Have Myelin?) 23
Danieldoo (Vivian) 22
Caregivingly Yours (Patrick) 20
Deo Volente (Lisa N) 20
Down the MS Path (Vicki) 19
Do You Have That in My Size? (Denise) 17
Jenn's Nook (Jenn) 17
Fingolimod and Me (Jeri) 16
Human Life Matters (Mark) 16

51 Mildly Prolific MS Bloggers - so far in 2008!!

A Life of Learning with MS 15
Behind Blue Eyes (Zee) 15
Katy and Mike's Adventure (Katy) 15
Living Life as a Snowflake (Sharon) 15
Mandatory Rest Period (Kim) 15
MS Maze (Mandy) 15
My Journey with MS (Christina) 15
The Multiple Sclerosis Companion (Pat) 15
'Tis Herself (Kell) 15
A Short in the Cord (Joan) 14
Blindbeard's MS Blog 14
Bubbie's Blog (Cathy) 14
One Crazy Chick (Chris) 14
Pat's Pond (Pat) 14
Rants and Musings (Cutter) 14
G and K's Mom 13
MS Toolkit 13
Newly Diagnosed with MS (Andrea) 13
One Life (Stephen) 13
MS Not Just a Diary (Doug) 12
Rayne's World (Jayme) 12
Chaos Personified 11
My MS Journal (Jaime) 11
Purely Patsy (14 yr old Patsy) 11
Victoria Plum - Technician! (Victoria) 11

26 Less Prolific MS Bloggers - so far in 2008!!

Broken Clay (Katja) 10
Mark Pickup (Mark) 10
My Chain Driven Ride through Life in Alaska (Michelle) 10
Deborah Does Navel-Gazing (Deb) 9
Funky Mango's Musings 9
Inside the Mind of a Squirrel 9
Living Well with MS (Michon) 9
No Time for MS (Courtney) 9
Sorting It All Out (Michael) 9
Travels With Lucy (Virginia) 9
MS Caregivers (Prudence) 8
Can You Hear Me Now? (Donna) 7
Irreverence is Justified 7
Multiple Sclerosis Notes 7
My Tysabri Diary (Lauren) 7
Chris Has MS (Chris) 6
Diary of MS X (7 Divas) 5
Electrical Disturbance (Stephan) 5
Know Multiple Sclerosis 5
MS in the OC (Frank) 5
MS News and Notes (Deb) 5
MS Recovery Diet Blog (Ann) 5
The Endomorph (Ruth) 5
The Jaws of My Life (Jaws) 5
Time to Deal with MS (Homer) 5
YodaMamma MS & More 5

38 Barely Prolific MS Bloggers - so far in 2008!!

Some of these folks have multiple blogs or co-blog and are loved none-the-less!! Let's help spread the love and let them know that WE know they are appreciated.

Carolyne's MS Odyssey (Carolyne) 4
Defeating Illness (Chris) 4
Intent, Context, Perception (Chris) 4
Libbi's MS Journey (Libbi) 4
MS Recovery Diet Blog (Judi) 4
My Autoimmune Life 4
The Life & Times of Sancho Knotwise (JM) 4
The Zen Pretzel Trick (Zen Angel) 4
When it's Raining... (Keeley) 4
Kebenaran - The Truth 3
Montana Homecoming (Sister Jane) 3
Ms Quill 3
Reality Chick (Keli) 3
Catch My Disease (Lisle) 2
Clods and Pebbles 2
Dissonance 2
Georgia MS Advocates 2
Lazy Dog Public House 2
Looking Forward with MS (Pamela) 2
Surviving MS in Alaska (Michelle) 2
These Pretzels Are Making Me Thirsty (Trrish) 2
Troy's Multiple Sclerosis Experience 2
You Me and MS (Judi) 2
Camille's MSadventures 1
Comment Column (Virginia) 1
Erik's MS & Lyme Blog 1
Hop Bloody Hop (Philip) 1
Jenn's Journey with MS (Jenn) 1
Living with MS (Cyndee) 1
Mismorphic's World of MS 1
MS Musings 1
MS Real Life Stories & Issues (Kristin) 1
Postcards of My Life (Sherry) 1
Rebooting Times 1
Shoester (Doug) 1
The BS of My MS (Heather) 1
The Perseverant Pincushion (Trish) 1
Tysabri Help (Deej) 1

Having too many items from various posters to count:

LJ Users with Multiple Sclerosis

And finally - 26 MS Bloggers who have been silent in 2008!!

Angst on a Shoestring (Gina)
Dandelion Wine (Lynx)
Doug's MS Journal (Doug)
Imagine Bliss Butterfly (Suzy)
It's Not All in My Head (Optimist)
Just Above the Abyss (Heidi)
Life with MS , seeking a cure (Karyl)
Managing MS with Tai Chi (Joel)
Managing Multiple Sclerosis
Marciarita
Michele's Blog
Mike's Place
MS - My Scene (Virginia)
My Complications (Amanda)
My Demyelination (Tina)
My MS Experience
Object of My Injection (Michelle)
Say It Isn't So (Mouse)
Talk Story with Kimberly
The Great NetXperiment
To Be Continued... (Jaime)
Truth and Beauty (Baraka)
Tryin' to Imagine Bliss (Suzy)
What is MS to Me (Dave)
Willy's MS Rants
Wind Among the Reeds

Hard to categorize:

I Have MS (Tim)
Huggins' MS Pages (James)
MS - A Personal Account
MS Protocols (Jeff)
MSB's Podcast
MSing Around
Multiple Sclerosis Blog and News
Multiple Sclerosis Sucks
OUCH! It's a Disability Thing
Squiffy's House of Fun

Thank you for helping to build a stronger MS Community.

On your Mark, Get Set....

Go!!!
Two years ago, my hunk of hugs, John, sometimes referred to as Wookie (which is another post sometime), said he wanted to do the MS Bike Tour. It has varied in length over the years but is a minimum 100 kilometres (about 60 miles) over two days. It has an optional 60 more k as well for the masochists out there.

So John began training and I bought myself a mountain bike to train with him. Not being very athletic, ever, but keen on encouraging the man and getting myself outside and in better shape, I joined him. Almost before the bike tour I had decided to do the next one which was in 2007. So I continued to train and bought a hybrid bike as the mountain bike isn't suitable for the road. And I did the tour last summer.

Because of where I live, weather is not really the greatest for riding this time of year and we will undoubtedly have a couple more storms before Mother's Day (sometimes after!); but I'm itching to get outside again. I dug out the bike over the weekend and set off today to get myself warmed up. The mountain bike is good to train on for short distances and is wonderful in the woodsy trails. I was out riding for about a half hour and enlisted some locals to take a pic.

In the background is the town of Bedford, where I live, and the historic Bedford Basin where the convoys prepared to head overseas during world War 2. I often bike all the way around and back in the spring and summer as there is a great training road with all kinds of hills (yech). It's a great way to measure my progress as it takes fewer stops to get up those hills each time I bike it.

It's a start...

S.

Cranky Baby

Patience, dear readers. Been a little hectic at work this week and trying to squeeze in a little time with the parental units. I've also been working on a post for publication soon.

I have some really cool listeners, you know? One of them has a little too much time on her hands and has now got me hooked on Cranky Baby. the child will be visiting me at work sometime and will even join me on my training for the Bike Tour (which begins in earnest very soon). Enjoy the video. Here's the link.
S.

Just Be Nice

The ideas that have lighted my way have been kindness, beauty and truth. - Albert Einstein

Last weekend afforded me to observe some medical personnel in my community. I only wish everyone's experiences were as positive as my own.

After going without food and very little to drink for almost 24 hours, I was dehydrated and that made getting blood quite difficult. After scanning and searching for an appropriate vein for at least 10 minutes, the nurse told me she wanted to get another to do the procedure as she didn't want to put me through too much. The other nurse managed to do it on the second try. I was very happy with the first nurse's decision to hand off to someone with more experience.

At the women's hospital I went to after that, the med student participated in my internal exam. He got the speculum in but couldn't see well enough to get the swab where the doctor wanted it from. He stood up and let the doc sit down to do that part of the procedure. The student stood next to me and said he didn't want to put me through too much and rather than poke around looking for something let the doc do it.

The doc had also asked me about when my last pap was. She said if I was due for one she could do it at the same time as her exam rather than me having to go through it again in my family doc's office. Nice.

When talking to my family doc about my health last year, I told her about all the biking I was doing and my frustration with the lack of weight loss I was experiencing. Yeah, I know all about muscle mass etc....and my shape was a little bit different because of it. But all my clothes still fit. I wanted to get into a smaller size. My doc empathized as she was trying to "remodel" as well. A little bit of sharing, on her part, went a long way to making me feel better about myself.

I have blogged about the wonderful care I received when I was first diagnosed and hospitalized. Even the housekeeping staff who made me laugh. I really can't count the number of kindnesses I received. And I haven't yet told you of the staff at the MS clinic.

I read med blogs on a regular basis and am amazed at some of the docs and nurses who are surprised at patients thanking them for their care. To them and others in the field, I say thank you for your care and your compassion.... and for laughing at my jokes.

S.

An Inconvenient Truth

It is difficult to maintain optimism when reality can be so pessimistic for many. I've been referred to (though not directly)as Polyann-ish at times and I'm really not. I'm very lucky, as I have often said, with my MS, and life in general. That being said, I have my dark depressing moments, too, so I can understand that point of view. But focussing on the bad can only bring more bad. It is a self fulfilling prophecy. Think bad things will happen to you and you're more attentive to them when they do.

There was a woman I went to university with who was one of the sweetest people I have ever met. She was kind, empathetic, funny, and always willing to help you with whatever was in her ability to do. She also had the worst luck of anyone I have ever met. If something could go wrong for Liz, it did. She was working really hard to put herslef through school (engineering no less) and in her second year of a 3 year program she became sick and ended up missing a lot of class time. As a result, she had to do a make-up year, so to speak. She buckled down to do just that, though financially it was difficult. Her parents had little extra money, so she was her only source for dollars. At Christmas time in her third year, her father, a travelling salesman who was also deaf, was attacked in a hotel elevator, beaten with a pipe and left for dead. (I had met the man the year before when he was passing through town and came to dinner with Liz one night in the cafeteria of our residence. He was a small, quiet man, who nodded politely at everyone as we raised our voices so he could hear us. The police believe the animals who attacked him had probably approached him from behind,said something to him and not hearing them, he didn't respond.) He ended up in a coma for a short time before finally succumbing to his injuries. As far as I know, in the 20 some years since that happened no one was ever caught for that crime. Liz came back to school again. A couple of months go by and Liz develops some sort of rash that a doctor diagnoses as scabies. She spends a couple of hundred dollars (that she can ill afford) on washing everything she owns and applying whatever ointment the doc prescribes and recovers. A month later it's back. She sees her regular doc (who had been away when the rash initially started) and is told it's not scabies, but some other exzema type illness that will get better on its own. And it did. She was in my room one day when I received a call at the pay phone down the hall. I was out for a couple of minutes and left Liz in my room. When I returned, she said, "I fixed your candle for you. It was going to burn right over the edge". I had been given a candle that came with instructions on how to shape the edges so it would burn down in a specific pattern and I had been patiently shaping it for several hours. There was no way I could tell Liz that she shouldn't have done that. I just thanked her for her attention. Liz eventually graduated with her engineering diploma and though I lost track of her for 20 years or so, I did learn she went on to get her degree and obtain employment as an engineer.

The entire time I knew Liz, even through the darkest days, she maintained a niceness about her, an empathy for any who were going through a rough patch, and an easy laugh and really cute giggle. We all saw her weep at the news of her father, but then buck up after that incident and carry on. We saw her frustrartion at the scabies incident, but again, we observed her carry on. She never once had the attitude of "poor me". She never once said, "Why me". Those of us who knew her all said those things for her, but never to her.

Liz did not ignore the truth of the crap she went through. When told she had scabies, she said she had visited relatives one weekend who had a farm so it was within the realm of possiblities for her to have picked up the little buggers. When asked about her father's hospitalization and subsequent death, she told us she was angry and sad, but she said, I have to do what I can for my mother and little sister now, and that means finishing school. She fixed on the best possible outcome and strove for it.

Liz never focussed on the bad things that happened to her. She always had hope for whatever was going to happen. And that is what I try to do as well (though I have a post bubbling at the surface as to how I seem to attract negative electronic events in my life) with my MS. People who hear me speak about MS at fundraisers or just one on one, know that I tell the inconvenient truth (sorry, Al) that while I look great today and appear to have all my physical and mental faculties, the disability of MS lurks in the background every day of my life. A specific drug may be helping me to achieve what I accomplish, but so do the little (and big) naps and rests I frequently take. So does eating a relatively balanced diet and all the little treats I allow myself (good for the mental health). So does not beating myself up for perceived failures like a divorce or bad relationships, or for forgetting my shopping bags when I go to the grocery store. There are many things I do to maintain my current status. Is putting hope in the mix part of it? Yes, indeed, because I hope for a future without MS. It doesn't appear that it will be in my life time, but I strive for the future anyway.

Most of this post has been fuelled by a recent posting of Lisa's on Brass and Ivory about PR campaigns for MS drugs. I have nothing against PR campaigns in general, or PR companies. I'm in the PR business myself. What I want is transparency. When I speak to groups about my experiences I tell them who I am, who my employer is, and the good and bad of my experiences. It's the truth. And isn't that what we need?

S.