Sunday, December 6, 2009

Spin!! - Art Auction to Benefit Myelin Repair Foundation

We've talked about The Ride Project and Courtney's commitment to donate $1,000,000 to the Myelin Repair Foundation through sales of limited edition photography prints focusing on things which move.

We've talked about the Myelin Repair Foundation.



This Tuesday through Friday, December 8-11, 2009, the Myelin Repair Foundation is holding an online auction featuring the cycling photograph which started it all!!

"Spin"

Courtney says...

I launched “The Ride Project” to support the Myelin Repair Foundation because I believe in the MRF’s research model that is solely focused on finding and rapidly delivering treatments for MS patients. The Ride Project (http://therideproject.com) is my commitment to donate $1,000,000 to the Myelin Repair Foundation through the sales of limited edition fine art photography focused on things that move.

On top of this commitment ,I am donating this print: (http://www.therideproject.com/nggallery/page-5/image/69) for the online auction starting next Tuesday. The photograph that I’ve chosen to donate is titled “Spin.” This image is all about motion, energy and passion. “Spin” inspired The Ride Project, which combines my passion for cycling and photography and continues to motivate me to move forward with my fight for a cure for multiple sclerosis.




More Details from the MRF:

The winner of the auction will receive this limited edition 12 X 18 photograph matted, signed, numbered and framed to 18 X 24 (white mat, black frame). This is the perfect present for a loved one that is passionate about cycling or loves photography.

The Auction begins Tuesday, December 8 at 8AM Pacific Time. It will end Friday, December 11 at 5:00 PM Pacific Time.

This will allow enough time for the framed and signed print to be delivered for a Christmas or holiday gift.

The starting bid is $250 and each bid needs to be higher by minimum increments of $10. So if someone bids $276, the next bid needs to be $286, $296, or $306 and so on.

The estimated retail value of the framed print is $500. For the winning bidder, the amount paid in excess of fair market value may be deductible as a donation in support of the Myelin Repair Foundation. There will be no additional shipping costs (courtesy of Courtney Carver.)

To bid, comment on this blog post (http://blog.myelinrepair.org) with your bid amount and enter in your full name and email address where we can contact you, otherwise your bid will be void. We will periodically update the blog, our Twitter account, and Facebook Fan Page with the top bid amount.

Reminder: Bidding does not start until Tuesday morning, December 8th. There will be a special text field where you can enter your bid.

Please spread the word:
forward it! email it! blog it! tweet it! facebook it! sing it! write it! say it! dance it!

BIDDING DOES NOT START UNTIL TUESDAY, DECEMBER 8th!!

Saturday, December 5, 2009

Myelin Repair Foundation Supporters

After looking into where the money flows within prominent MS organizations last April, I met Justine Lam who is responsible for the Myelin Repair Foundation's online presence. We've become friends. When Justine asked if I could contribute to a holiday fund-drive video, I said sure. See what some of these folks had to say.



Be sure to stay tuned, because there is more news and events related to Myelin Repair Foundation coming in the next few days.

Friday, December 4, 2009

Please welcome Muffie to the MS Blogging Community


In the beginning...
Greetings!

This is my first blog, so please bear with me as I learn the ropes!

A little about me…
I’m a “woman of a certain age” – old enough to know better, but with the heart and soul of youth! I am married to a wonderful guy, have 3 children [boy, girl, boy,] and will become a grandmother in February.

I was a Junior High English teacher and then became an elementary school principal. During that particular journey, I was diagnosed with MS, and am now on disability, trying desperately to adjust to this new situation.

I follow many MS blogs which help me in this adjustment period. In another posting, I’ll describe how all of this occurred. For now, I just need to begin this journal.
In the past, I was also a cross stitch fanatic; thus, all the blogs in my collection which follow other stitchers. I was also an artist – drawing, painting, pen and ink, calligraphy – and at one time had my own small business, selling my works. All of those pursuits have been dropped by the wayside as this disease progressed. However, I hate thinking of myself as a quitter, so I’m trying to discovery ways I can get back to some of these pursuits. Not an easy process, as I have little use of my right hand.
I named this blog Kaleidoscope because that’s how I envision my life. With each little turn, I find a new picture before me. Sometimes the view is confusing, but I try to find beauty in it.

I hope that in time, I’ll hear from some of you out there. I know it will take time before I’m accepted as part of the blogging community, but I’ll be patient. If you’re a fellow MSer, let me know how your days are going. If you’re a stitcher, share your work with me!

Wishing all of you a pleasant day!!
--Muffie

Thursday, December 3, 2009

Carnival of MS Bloggers #50

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


Newly-diagnosed Copaxone user Sarah says I Hit a Vein Today and....

It HURT!!!

Really bad.

It was in my left thigh, I fired and everything was fine. I waited my 10 seconds as the Copaxone slowly transfered from the syringe into my body and when I pulled the Autoject away, I almost passsed out.

BLOOD!

LOTS OF IT!

At the very moment I saw it I thought, "Ugh, that's not good". I cleaned it up and luckily it stopped bleeding pretty quickly. I sat on the side of the tub for a moment and took a look at my new word art, For My Life! "Yes, it is" I thought.
I cleaned up the 'scene', applied an ice pack, and went into the living room and sat next to the hubs. He asked, "What's wrong?" and I just shook my head, "Nothing". Clearly lying.
I knew the veins hurt like hell. Lesson learned. Mark the 'shot spot' before applying heat so I can actually see what I'm doing.
~~~~~~~~~~~~~~~~~~~~

by Judy of Peace Be With You


If I get weepy,
It’s usually because
I miss who I was.

I know I’m still me,
But my new garment sometimes
Does not fit too well.

I am mostly brave.
I smile through a lot that pains.
Aren’t I just like you?


by Judy of Peace Be With You


I sometimes forget
how impaired MS makes me.
I think I'm normal.

Looking at others
buying groceries with ease
reminds me I'm not.

I must remember
what it’s like to feel healthy
so my brain does too.


by Judy of Peace Be With You


Graceful is someone
who accepts life’s ups and downs
with cheerful aplomb.

I am sometimes good.
I scale the rocks and ridges
without falling down.

But frequently
I stumble into the ditch.
I must start over.

~~~~~~~~~~~~~~~~~~~~


Broken Tailed Traveler

How can I respond to the kind things you have all said to me in comments here on this blog and privately through email, except to say that I am grateful that this wasn't about me? I say this with anavah (humility) in my fullest understanding of the word. I was taught through the study of middot (soul traits) that this word (at least in Hebrew) does not mean humble as in lowly, but instead it means knowing when to step forward and take ownership and recognizing when to step back and allow others to shine. Perhaps in this instance we have all stepped forward in unity, illuminating the world with our shared awareness of the blessings we have received, despite or even because of our brokenness, with full acceptance of joy, much like this broken-tailed butterfly appreciating the fragrant orange flowers upon which it is feasting. I may have had a seed of an idea that became the first stitch in this quilt but it grew from the wisdom of many individuals collaborating. For this word quilt is truly an ode to all of us who participated in creating community here in the blogosphere as well as the travelers who have stopped by to witness our gratitude and in turn have become part of this comforting blanket; a community of humanity far and wide. This whole experience has been an unfolding, blossoming, opening, song of souls, blessing life; each of our unique voices joining in to create a harmony that is complicated, textured, rich and sweet. Indeed a choir of love that I hope will continue to reverberate in our hearts for a very long time.

As you can probably tell by my improved vocabulary, the steroids are beginning to heal the swelling in my brain. Over the past two weeks I have traveled to many lands much like this blog entry, at least if you had heard the changing accents through which my brain has conveyed the English language through my voice, it would appear that I was quite the world traveler. It has been a fascinating journey for my family. Every morning I start the day sounding completely different from the day before. Even inside my mind I hear whatever voice will follow before I open my mouth to talk…certainly a clue of some kind to an aspect of the process of speech formation. When this all started two weeks ago, my pitch was higher, my English was halting and kind of “broken”. I could easily have been mistaken for a recent Chinese immigrant, just learning my own mother tongue, American English. Then my syntax would be confused and I sounded somewhat like Yoda from Star Wars. At other moments my r’s were completely gone as were unessential words like “a” and “the”; s’s were not present to indicate plurality. Then I would go back and forth from this more toddler like formation in speech to a slightly southern sounding voice, a lilt to my voice as though I were from Georgia or South Carolina. Yesterday my pronunciation shifted so that I sounded like I was from somewhere in Northern Europe; an undisclosed country, but certainly not the Philadelphia accent I grew up with. Today the morning began with toddler speak and difficulty retrieving words but then for most of the day it has been a combination Irish brogue with a slightly Canadian flavor. Late this afternoon, around 3:30 or so, my normal voice, with proper syntax and most of my vocabulary returned. I did go back to Irish for a wee bit this evening and then found my natural voice again. Why this fluctuation and world travel is happening in my brain is a marvel; a mystery of misfiring neurons altering my speech patterns, I suppose. It has been a “long strange trip” (to quote the Grateful Dead) to be sure. It is as though I am an actor or perhaps channeling the voice of another being, and yet beneath all of this lies my “witness consciousness”; my own thoughts below the surface sometimes accessible through language and at other times just “watching”, unable to fully communicate all that I wish to convey. And so admittedly there is frustration, especially when I can’t remember the precise word I want or when I sound more like Elmer Fudd than a 44 year old woman…but my curiosity about this bizarre phenomenon has allowed me to once again discover the blessing through the humor of this situation. Yes this time around it is the gift of laughter at the surprising nature of MS that is sustaining my family and me. My eldest daughter is sorely missing my brogue this evening. This was her hands-down favorite. I must say we all enjoyed a moment the other night when I exclaimed while viewing a movie: “This is weally, weally, cweepy!”

Who knew I’d feel a loss as my completely uncontrollable speech patterns began to disappear?! But tonight as I’m writing this, even I’m a little bummed out that I just sound like ordinary me again. And to think, when this all started I cried! I don’t know how I’ll sound tomorrow morning, of course…the hour is late, before I know it day will break and a new adventure will be revealed.


This concludes the 50th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 17, 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, December 15, 2009.

Thank you.
Comments for this post.

Wednesday, December 2, 2009

Welcome to the MS Blogging Community

Diva on a Detour by Linda
I have finally started blogging! An opportunity to share my thoughts and dreams and experiences in a fashion that is much more organized (and hopefully interesting!) than I have been doing. I’m Linda and I have been described as a diva for most of my 50+ years (a title I gladly accept!). This diva’s journey has included meeting and marrying an amazing man (after a disastrous first marriage), earning a MBA while working full-time, and having two children. Life has thrown our family several curves/detours, including losing my father from Alzheimer’s in 2005, losing contact with my only sister in 2006, and my MS becoming seriously disabling in 2007.

by "Sarah Bellum" - Becoming a New Me
A journal about adjusting to a diagnosis of Secondary Progressive Multiple Sclerosis. As hard as it is to adjust to this rollating “Me,” I am also very glad that I have more energy these days. That’s because I am doing things like conserving energy by using the rollator, sitting at the kitchen sink and at the bathroom vanity, and basically sitting, sitting, sitting when I need to. I also have more energy for other reasons. I have lost 12 pounds (!) in the past 6 weeks and that for the first time in years, I am sleeping through the night and getting restorative REM sleep and am dreaming. That’s due to a muscle relaxant I’ve been taking for my annoying spasms in my right leg.

Shine the Divine by Laura
My life is filled with many joys, including: creating my own art, coaching others as they unlock their own soul's creative expression, sharing the practice of SoulCollage, teaching teens and adults yoga, art and Jewish spirituality, living and loving my husband, daughters and our menagerie of animal companions.

Our Life with MS by Jack
How would I describe unseen symptoms to the neurologist…and in a foreign language? Suddenly I felt almost foolish and wondered if I was taking this too far. I wanted to leave all of these troubles behind me and accept the fact I had been overcome with anxiety and suffered from a simple ear infection. I wanted to feel better, but deep inside of me I knew…I knew something was terribly wrong.

Multiple Sclerosis has a Daughter
My journey with my Dad and his life with Primary Progressive Multiple Sclerosis.... and the kids and the job and Husband!
Allow me to update quickly. I mean no disrespect to my father. Sometimes it can be a little difficult. So talking about it helps. For example, tonight... when I put him to bed. What do you mean your legs are not in the right spot. Now that I have moved them where you told me to they appear to be in the exact same position. I do not understand and if we are not careful I am going to dump you onto the floor... is that better? OK. Good. Sweet dreams and I will see you in the morning.

Tuesday, December 1, 2009

Yes, please...deplete my B-cells

On November 19th, I went to the local hospital outpatient infusion clinic to receive the first dose of Rituxan® (rituximab). This Thursday I go back for the second dose which will complete one round of treatment. Rituxan in combination with methotrexate is indicated for the treatment of adult patients with moderately to severely active rheumatoid arthritis who have had an inadequate response to one or more TNF antagonist therapies (such as Humira, Enbrel, or Remicade).

Those of us living with multiple sclerosis CANNOT use one of the anti-TNF disease-modifying anti-rheumatic drugs (DMARDs) which are commonly used in the treatment of RA or other rheumatic diseases. This is because the anti-TNF drugs are known to increase disease activity in patients who have a demyelinating disease such as MS. Although I am officially using Rituxan as a treatment for RA, it is the hope of my rheumatologist, neurologist, and myself that Rituxan may be effective in slowing down my experience with MS relapses.

But leave it to me to have "issues" during the infusion. Those issues required medical intervention and a change of infusion rate. Fingers crossed that this Thursday goes more smoothly, especially since my rheumatologist is ordering extra amounts of steroids and stuff ahead of time.

Read this post and my story in its entirety:

Rituximab Infusion: My First Experience (on MultipleSclerosisCentral.com)

Rituximab Infusion for RA: My First Experience (on MyRACentral.com)