Going Blind 10 Years Ago

"Ten years ago on this Tuesday in March, I woke up not able to see out of my right eye...."

That's how one version of my story begins. Please watch this 6 minute video in which I speed you through my journey to an MS diagnosis. A journey which took 5-12 years, even if I didn't know that I was on that road at the time.

I started writing about my story on my personal blog some time ago, although I haven't added to it recently. If you'd like to read the longer version which began in college, I recommend starting with "Eyes in the Back of My Head."

Watch a video of me telling my diagnosis story:

MS Awareness Month: My Diagnosis Story - A 10 Year Anniversary

End of Life

At HealthCentral, we are talking about "death and dying" during the month of March in addition to it being MS Education and Awareness Month on MultipleSclerosisCentral.com. Here's my post I wrote for MyRACentral...

Thinking about the end of life, at any age, is not a pleasant situation. We spend so much time talking about how to live well with chronic illness that we often fail to make our desires known in the event that life takes a downturn. We may not have considered how we’d like to be treated, or not treated, in our final days. I have only thought about this because I’ve watched relatives have drastically different experiences.

When my grandmother was dying several years ago, it was difficult for my father and his siblings to have the responsibility of deciding what type of life-saving procedures she may or may not have wanted. Even after she and her doctor had signed a DNR (do not resuscitate) order, it failed to prevent the EMTs from taking her to the hospital after a nervous home health aide panicked and called 9-1-1. This event further prolonged her life and suffering, but it did grant me an opportunity to see her “one last time.”

Read this post in its entirety:

Engage with Grace: Planning for the End of Life with Grace and Dignity

MS Awareness and Big Prescription Bottles

The National MS Society of the United States declares this "MS Awareness Week." You can read more about it on the NMSS website.

In the meantime, I thought that I would share what came in the mail today. A big-o bottle of gabapentin (generic for neurontin), six months worth if I continue to only take 3/day. I think that the pharmacy got some new, larger bottles to play with. Usually my prescription comes in multiple smaller containers. Just thought I'd share this today. :)

Birkie Skiers for Cures and the National MS Society in Wisconsin

As most of you know, I write for HealthCentral.com. In fact, I write for three of their disease-specific websites: MultipleSclerosisCentral, MyRACentral, and MyObesityConnection. In the process, I work with three individual great producers.

Last weekend one of my producers was in Wisconsin participating in the legendary cross country skiing race called the American Birkebeiner. "It’s this crazy long, crazy hard race through the north woods of Wisconsin on nothing but two pieces of fiber glasss," says Sara.

After she returned from the race, she tells me that a good friend of hers was diagnosed with MS a few years ago. Since then she has skied in her friend's honor through Birkie Skiers for Cures and the National Multiple Sclerosis Society.

"This year, I was skiing for you, too! Here’s a pic of me at the end…all smiles!"

Can I just say - WOW!! Nobody has skiied, walked, or biked for me before. Well, except those piano student families who walked WITH me that first year at the MS Walk in 2006. I guess that counts. ;o)

I'm a bit surprised at how touched I was by Sara telling me this. So touched that I didn't know how to respond at first and I just now answered her email.

Last week I visited the HealthCentral main office here in Arlington, VA to give my MS producer some short videos I had taped. They will be posted throughout the month of March and the 1st one made it up on the site yesterday. Here's the 2nd video and post regarding "getting diagnosed with MS." Next week, several of us are telling our diagnosis stories.

While I was at the office, I got to meet face-to-face each of the lovely persons I currently work with and have previously worked for. It's nice to put a face to the person on the other side of the keyboard and computer screen.

This just reinforces that there are real people behind the blogs and screennames. Real people who do great things. I hope that I will always one of those approachable folks who are "real" in discussing their lives and their diseases. Seriously, how can you be anything but honest when talking about MS or RA or even obesity.

It might take me awhile to answer emails (read above) but I do try to respond. Remember, though, that I do have two diseases which can make the brain a bit foggy. If I don't respond, please feel free to email again.

So here's to MS Education & Awareness Month in the United States. I am now aware of the Birkie Skiers for Cures which sounds like a great organization and bunch of folks who have fun while raising money for good causes. This year the National MS Society got hooked up. Go NMSS!!

Vienna Horns Release a New CD

A friend on Facebook linked to the following video on YouTube. This is amazing!

The sound of these horn players (and their horns) makes my heart grow about 2 sizes within my chest. I love it!!

I was not aware of this ensemble and their previous CDs, but my reaction is similar to the one I had when I first heard "The London Horn Sound" CD which came out a decade ago. Enjoy this excerpt:

MS Education and Awareness Month

What would you want to the world to know about MS and its effects on how you live your life?

That is the MS Question of the Week at HealthCentral...

It is March!! National Multiple Sclerosis Education & Awareness Month in the United States.

Of course, we who have MS are aware of our disease on a very personal level every month of the year. Those around us may be aware of MS through witnessing its affect in our lives. But the general public may not be aware nor educated in what MS is and what it can do to those who have it or who care for someone who has it.

The theme which the MS Foundation has chosen this year is "Ready, Set, Shine" and they've challenged us to move outside our "comfort zone." Doesn't have to be far outside the zone; the idea is to challenge yourself and perhaps try something new.

Read this post in its entirety and answer the question:

MS Question of the Week - Awareness!!