Sharing Pictures from the Big Day

Just a few images from the wedding which our fabulous photographer captured. It's so hard to pick favorites out of the over 1000 pictures which were taken. I think I've narrowed it down to around 400 so far? Enjoy.

Carnival of MS Bloggers #90

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

Light in the Shadows

The Journey - Light In the Shadows
by Karen of Meandering...One Moment Please

Hubbers snapped this pic of me taking pics.

I was concentrating very hard on the tiny flower in the shadows, adjusting for the perfect exposure. You can compensate for the darkness by changing the aperture. The aperture setting determines how much light is admitted "into" the camera, determining how much light reaches the image. I just couldn't seem to get it right!

I was skeptical of how this shot would turn out.

I was happy, yet surprised to see that the light in this shot was great. I guess a little stream of sunlight that I was unaware of beamed through the shadows when I clicked off the shot.

I was concentrating so hard on the shadows, that I didn't see the light.

We all know where I could go with this...analogy wise, but I won't. Suffice it to say, many lessons are learned when we least expect.

The fullness of life consists of light and shadow,

and the movement between the two.

wishes

by Just a girl with MS

I wish:

• I could have just one more day to live without MS.  I want to know if what I'm feeling is from MS, or just situational.
• I could find something to be thankful for - other than my doctor.
• I would stop feeling sorry for myself.
• I could think of MS as another challenge in life, and not an obstacle.

Today’s small stone 
by Laura of Shine the Divine

Who knew my chariot had magical powers….not only can it get me where I need to go gliding smoothly like Aladin’s carpet, but it can make me disappear.  I hope this does not sound bitter; this was simply my experience.  I felt strangely invisible as parents of kids I’ve known since my daughter was in kindergarten walked right past without saying hello during the award ceremony.  Perhaps it was because they were focused on their kids, or because I’ve not been able to be involved in volunteering for such a long time, or because I was below their line of vision, seated in my wheelchair.  But I remembered all of them and watched them chat with one another. It is interesting to simply observe without the burden of small talk.

What Does the MS Label Mean?

by Judy of Peace Be With You

The MS label
is like a Rorschach inkblot
testing perspectives.

Some use their MS
as a new hill to conquer
obstacles be damned.

Some will surrender
to unknown MS futures.
Some straddle the fence.

I'm very thankful that you continue to sharing your MS lives with me and with the world.  You inspire me each and every day.

This concludes the 90th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 30, 2011. 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, June 28, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #39

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

Honesty, Vision, and Perspective

Orange You Glad I Typed
by Kmilyun

Here is one of my favorite orange shots. I took it in 2007. it was one of my first macro shots that captured what my eyes and brain were seeing.

I loved the powder laying there, the pollen, ready to perpetuate the species.

I have always been fond of bright colors. Orange is one of those colors that I can not wear – it makes me look jaundice, as do browns, and yellows.

Noticing the little things, the small details that many pass by, comes naturally to me. I miss being able to hike somewhere and find the little hidden gems. Colorful moss on a rock, rusty old nails along a shore where a town used to thrive, and birds resting after flight.

Sometimes it really pisses me off when other bloggers with MS write about all the cool things they are doing. I get jealous. Then again the MS Societies pamphlets, videos, etc. usually show young, good looking people that relay a positive outtake – good PR? Trying to keep us positive?

I am not so positive about my vision doing wonky things. I hope sometime this summer my eyes will be clear and my balance and legs muscles will allow me to get out and snap some shots. My camera has the fully automatic mode but it just kills me to dumb down and use it.

I had a dream the other night were the orange flowers were turning into the orange logo’s of MS. I woke up thinking how crappy that was. There I was hiking up a hill and every time my lens was focused on the poppies they turned into out of focus MS logos! How suck-o is that??

Finding the Muse

by Nadja

I lay in the darkness but sleep eludes me.
A clutter of useless thought crowds my mind,
These worries wash me in discontent.
But there is no need for worry--

I shove aside all concerns and center my mind.
I escape this husk
Travelling through visions of creation
In this state, everything I imagine, I can create.

It comes to me within these visions--
Time is key
Take the time,
I can manifest each thing I imagine

Results become unimportant.
I am adrift in sensory images.
My hands caress this design I have crafted from old things made new
I feel the texture of the fabric beneath my fingers.

I am not troubled by the distance of my vision
I can see now that I will create this thing
It does not matter when
It does not matter how long it takes

Just the existence of each artistic vision
Ensures I will somehow create what I imagine
There are no words to describe it
Behind my closed eyes, it is entirely clear.

I can wait--
I just must remember the things I have fancied,
As I drift toward slumber
They warm and inspire me--

Choosing Our Perspective 
by Michael of Perspective is Everything

What is perspective? It is more than just how we view everything. Perspective is how we choose to view everything.

Do we really have a choice about our perspective?

We make decisions all day long: what to eat, what to wear, what to do, etc. We are in complete control over those decisions. Yet somehow, we think or have decided that there is a distinction between those seemingly ‘practical’ decisions and the decisions we make about the feelings that we have.

The fact is each and every one of those practical decisions is based on feelings. We even use language that confirms that we have control over these feelings. “What do you feel like eating?” “What do you feel like wearing?” “What do you feel like doing?” At a minimum, we all have to agree that we have control over at least some of our feelings. That leaves us with only one question: why is it that we control some of our feelings and not all of them? The answer is simple. It is because we choose not to.

Aren’t some of our feelings beyond our control?

Choosing not to have control over some feelings, serves some people very well. If we do not have control over something, than how can we possibly be responsible for it? There is a certain logic there, albeit flawed logic. The reason it is flawed is because it is not true: if we agree that we can control at least some of our feelings, then logic says we must also have the ability to choose which feelings we control.

As adults we make decisions all day long that are based on our feelings. The next question is what distinguishes the feelings that we control from the feelings that we do not control? Is it the strength of the feeling? Is it rage? Depression? Euphoria? Whatever the reason is, who determines the controllable feeling from the uncontrollable one. The answer can only by us, ourselves. Yes, it is true and it does happen that sometimes decisions are made for us. But no one other than ourselves can decide how to feel. In other words, we may not be able to control all that happens in our lives, but we are always in control of how we respond. We get to choose our perspective.

Perspective is deciding how we feel.

Only we can make the decision about how we feel. Only we can know the reasons or reasoning behind our decision. It may be that we don’t know the reasons why we feel a particular way. But whether known or not, our perspective is our decision. It includes every moment of our history, every feeling that we have ever had, the sum of all the experiences that brought us to this time and place. Our perspective is our choice and no one else’s.

Do we always exercise control over our perspective? No, because we are still human and still fallible. But knowing that we do have a choice and that we can often do better, may help us in choosing a better perspective.


This concludes the 39th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 16, 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 Tuesday, July 14, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #36

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

"Without Darkness There is No Light"

Photos by Nina

The Shadow Self
by Nadja Yse Stringer

I long to be only as I am--
To let the voice of doubt in my mind
Quiet.

I swore I would give up this addiction--
My desire to find chaos where there is none
My willingness to see obstacles where none exist.

Shadow self,
Nemesis
Catalyst
Anarchist in my mind.

I am not you
I am not my fear
I am not just my shadow.

But you are real
Not to be ignored or denied
You will have your say--

There's darkness
But there is also creativity--
Layers of my being only revealed
In the mirages with which you fill my mind.

I am not you
But you are me
Something deep in my soul that stirs me
up--

I never was silence
I never was tranquility
That too is not my nature.

I am bursting
But I cannot create without catharsis--
You are my catharsis.

I long to shrug you off
But you too have a place in my being
I cannot ignore your pull
You are a parasite
but one I need for growth.

So I battle you,
I resist,
I let you fill my mind with whispers of hate--
For my weaknesses

But you will not be denied--
Alone I shine briefly
But then go out--

Struggle as I may
I create nothing,
Grow nowhere without your shoves.

Without darkness
There is no light
Without either,
All things are cast in shadow

I can fight you
Or I can use use you--

Diary of Trying to Walk Again with Multiple Sclerosis - Day Four
by Diane J. Standiford

After 19 years of allowing medical types (that means doctors, therapists, and such) to direct my MS therapies I have decided to do what I have had to do all my life (those who want to argue this point---BRING IT): GO IT ON MY OWN.

I know how I got to this point in my non-walking/standing life. I alone watched it unravel before my ON (that's optic neuritis for you non-MS readers) eyes. I know the moments where changes began, I know what kept me down. My big idea is this----(Wait. Understand I am full of big ideas, some say full of something else, but constipation has never been a problem for me, though I never used a public toilet in over 25 years, unless you count that hole in the ground at some stupid park my mom just HAD to visit...now looking back I don't know how I did it, but I also rarely drank water...I must have been dehydrated all my childhood. Seriously, I'm surprised I made it this far with only a touch of cancer and slap of MS!) I will work in reverse to regain what I lost. Not much different from using psychology to help someone confront their demons or find their lost keys.

First up: rebuild muscle in left leg. Start standing on it every morning a little longer each time. Get an exercise bike I can use from my power chair. Shave my legs. Buy some shorts. I have exercises for all the muscles. I have cuff crutches, TWO quad canes, a gait belt, a rollator. Must eat protein, up vit D and calcium. Buy the "Rocky" theme song for my Ipod.

Then I will need people. Think Diane, think....where to find people to help me walk, hold onto my core/back...people people...

Day Nine:

Today I walked. I WALKED. Just 6 steps, but it brought the house down! There were tears of joy (partner) laughter and wows (friend) and "Yes I Can." (Moi)

Friend wrapped a gait belt around my upper leg (the dead zone leg) and as I stepped out I would shift my weight right to left telling her when to give a yank. We all agreed I could have gone farther, but we were all a bit overcome and will regroup tomorrow.

This all came after we fixed the printer, I did my mini exercise bike, my arm weights, dealt with my dental insurance saying I didn't exist, snacked on leftover salmon and fresh brocolli and sat in a moment of sun on the balcony. (Next week is supposed to be fantastic!)

Did I mention I WALKED??!!

Day Eleven:

This week was hard because I have an aide who is young and not very skilled. I manage my day so as to be not in need of her; she leaves early. So, I can't try the walking on Friday or Sat., at least until I get my helpers aboard. My laptop typing wears me out, so I must avoid it on those days.

Today a friend came over and after I took a spin around the new digs, we did exercises---the mini-bike, weight bearing (standing without holding on to anything), arm weights, ROMs (Range of Motion---she moves my legs through natural use movements), yoga (In my lift chair, lying flat I do positions.) and then she strapped my left leg and we took off---four strides out and back. Using the walker does strain my arms though and I had to schedule my Dr, appt. for late next week. He will just suggest PT or sleeping in my bed.

Did I mention I WALKED FOUR steps out and back? It always feels so good, so right. I must make my brain build a new pathway. If only I had Montel's people and money...LOL. No, this is MY life, MY MS, MY path.

Tomorrow is visit to new dentist in my new neighborhood. My visit to my neurologist last Friday was ridiculous; if I hadn't gone with a friend I would have thought it was all in my head. Oh well, another post.

Did I mention I WALKED??

This concludes the 36th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 4, 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 Tuesday, June 2, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #31 - Beauty and Inspiration

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

Beauty, Inspiration, Honesty

The Wheelchair Kamikaze shares  

A Few Wheelchair Photos.

No, not photos of wheelchairs, but photos taken from a wheelchair. The camera I use to do the Wheelchair Kamikaze videos is actually a still digital camera that also happens to shoot halfway decent video, and I do a lot of still photography using the same camera/tripod rig.
I was an avid amateur photographer before I got hit with MS, and had to put photography aside for about five years because of the disabilities brought on by the disease. Funny thing is, while I tried my damnedest to stay out of a wheelchair, using all manner of braces and canes, I was physically unable to operate a camera. Once I finally agreed to get the wheelchair, I was able to once again pursue my photography passion. Since I got a camera with a flip out view screen and a flexible tripod as gifts this past Christmas, I've been able to start shooting again. I think there might be a little lesson in there for us all...
And that lesson is, of course, to always ask for really good stuff for Christmas...
Here are a few of the photos I've recently taken. Click on the thumbnails for a larger view...





Mary lives with MS, works as a nurse, has started a travel blog, and writes beautiful poetry. Here is one I believe we all can relate to, found at Dealing with Human Pain by Travelogue.

After Awhile (first draft) by Mary E. Gerdt

After Awhile

After Awhile,
Things will be better,

Time will have passed,
Regrets will have faded,

Sorrows will dry after
The crying,

You will feel better,
Not like your dying.

After while,
When your back home

And safe in your place
Where you can roam,

And be one with nature,
Feel carefree again,

After awhile,
When we are older,

And we are settled,
And we are bolder,

We’ll reach for the sky,
Like we did before,

We’ll lose all our fear,
That closes the door.

After awhile,
The sorrow will fade,

That tugs at our heart strings,
That God alone made,

To keep us as humans, not a machine,
Who is hurt by a word, or an unkind deed.

Who heals when times get better and then,
Who bleeds and cries when losing a friend.

No mechanical device, we are flesh and blood,
And tears that we cry,
Rain down from above,
And fall from our faces down to the ground,
And wash off the fairies who watch us and frown,
Sad at all of our earthly emotions,
They stay close at hand when you’re feeling so lonely.

Never think you are alone in the middle of the night,
Or think your small world is causing a fright,
Open up and see the rest of the world
Is on your doorstep and ready to right,

All the bad ills and bad feelings you have,
May you see a world not so bad.
When you are feeling fear and evil intentions,
Look at a flower and its simple invention,

It is not so simple after all,
The flower can lift spirits after a fall,
The scent takes us to places long gone,
With the passing of time,
After while,
Sorrow will be done.

Lori shares some Fast Fun Facts about MS 

at 12 December 2008 - Saying It Out Loud.

Two out of three people with MS are women.

Your odds of getting MS increase by four times just by virtue of being born north of the 40th parallel. Canada has one of the highest rates of MS in the world.

According to 2007 research, only 24% of people with MS are wheelchair bound, and usually 15 to 20 years past diagnosis.

I have been told that finding comfort in the statistics about my condition is a tad odd, but I do.

As most people don't get MS, I've already beaten the odds. So, the likelihood that I will get the worst and most severe forms of the disease are even less. I'm also really fortunate that I'm under 40, living in a country with socialized medicine and great amounts of research dollars, in a province with Pharmacare, in a city with one of the best MS clinics in North America, and can survive on federal income supports until I can find a new job later this year. I shudder to think what our lives would be like if we were living in the US with Joe full time in school and me getting forced out of a job with no insurance benefits.

Seriously, think about that. Our lives would completely suck in so many ways I haven't even been able to fully imagine how much that would suck.

Don't get me wrong, my life is sucking pretty hard right now, but I think that we've plumbed the depths of that suckage. Unless something goes radically wrong before June I think we've seen the worst of the disease for the next five years or more.

I am fortunate to be diagnosed in 2008. If I were diagnosed even in the year 2000 I would not have the opportunity to get the drug I am currently on. I've been reading some phase 3 drug trial information and there should be oral medications that work better than the injection drugs we have now available mass market before I turn 40. There's a lot of holistic research being done in BC regarding exercise, fatigue relief, cannabis, nutrition and the like. In May I find out if I can be considered for some of those research projects.

I've decided that if they can't find a cure in my lifetime I want to be a part of trying to find one for the next generation. I want a cure, and barring that I want a treatment that's like the insulin for MS. I want to be able to manage this, and I guess that's going to be a process.

The social worker at the MS clinic gave me a nutrition article telling me to eat lots of antioxidants, omega 3 fatty acids and drink a glass of syrah, cabernet sauvignon or pinot noir a day.

As someone who loves bright fruit and berries, sushi and avocados, and red wine... eating for my health is going to be a real pain in the butt. ;)

I'm not really good at looking on the bright side of things, but I'm pretty good in a crisis. I'm not interested in becoming a motivational speaker or lying to people about what I'm really going through. I've always said that I am a realist not an optimist. I'm not supremely confident in my ability to want to live. That's the biggest one. I'm trying, but finding the will to live and actually do something with my life seems unlikely.

I'm not noble and things less than MS have destroyed my life to the point where no matter what I do my life will never recover. I have been brought to my knees by things far less than this disease and spent years in the abyss of depression, self-destruction and poverty.

Many people told me that the first year after diagnosis is really difficult but once you find your "new normal" you learn to deal better. That's probably true.

A year can change so many things.


This concludes the 31st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on March 26, 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 Tuesday, March 24, 2009.

Thank you.

Comments for this post.