An Observation

I kid a lot about MS, about how people with MS are the best looking people I know or how they have the best sense of humour.

Truth is, people with MS are no different from any other group of people. Some are idiots who I want to slap into next week, but we are all just people.

People have their faults of course. Some people are in denial about their surroundings, blaming their personal relationship problems on MS. Some are ostriches, ignoring the problems they do have, whether it's because of MS or not.

I know people who are constantly angry, seemingly about their MS, but they were angry before the MS. I know people who have ignored their MS to the point that it has done irreversible damage.

There are people who constantly make a loud noise who actually have the least to complain about. Their glass is always half empty.

Mostly people are nice and they are the ones I will continue to speak for when talking to donors. The up side is that the whiners will benefit as well, only they will never know it.

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.

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.