Monday, January 19, 2015

MS on TV

Last night, my 11-year old son and I watched Guy's Grocery Games--a Food Network cooking competition show where families run through a grocery store then cook meals with challenges like "canned food only." (Don't judge me. Everyone has embarrassing TV viewing and mine could be way worse....he hem...Housewives franchise, anyone?)

Anyway, when one of the contestants was asked what he would do with his winnings, he said he would help his mother who was disabled due to Multiple Sclerosis. Then a picture popped up showing a woman slumping in a wheelchair. I took the opportunity to remind my son (for the umpteenth time) that "20 years after diagnosis, about 1/3 of people who receive no treatment may require a wheelchair or other assistive device"...which means that 2/3 won't need a wheelchair and those numbers will be even better for those that take disease modifying drugs.

I started thinking about how often I hear "MS" on TV. Lest you think we are a household of couch potatoes, you should know that, although I have been known to have marathon viewing of Showtime series and my teenager watches way too many shows about little people, there are days when the television isn't even turned on...much to the dismay of my children.

I used to watch the medical drama program House on a regular basis. More times than not, Dr. House and his team of diagnosticians had to rule out Multiple Sclerosis when they were trying to diagnose a mysterious paralysis. I don't drink anymore but I always thought it would be a great drinking game to do a shot every time someone mentioned MS.

Remember West Wing? The show made headlines when viewers learned that President Jeb Bartlett had a medical secret.  Yup, you guess it:  MS. Viewers learned a lot about relapsing and remitting Multiple Sclerosis including symptoms that came and went and injectable disease modifying medication.

According to the National MS Society, an estimated 2.3 million people have MS. So, I guess I shouldn't be surprised I keep coming across so many characters on TV who have or may have MS. And then there's all the real-live famous folks:  David Lander (aka, Squiggy); Richard Pryor (RIP); Montel Williams; Teri Garr; Jack Osbourne; Annette Funicello (RIP); Richard Cohen; Tamia; Clay Walker; Ann Romney; Kelly Sutton and Trevor Bayne (NASCAR); Joan Didion; Alan and David Osmond; Josh Harding (NHL); Chris Wright (NBA); and, according trashy tabloid sites that came up on a Google search for "celebrities with MS," even one of those Housewives may or may not have MS!

They're in good company.

Friday, January 16, 2015

Remember Me?

I haven't blogged in a really long time. I can fill this page with excuses about how I've been parenting, working, volunteering, having fun with friends, traveling, and falling in love, or I can commit to myself (and since it's public, to all of YOU) that that is going to change...right now.

I spoke about having MS and low vision at the Perkins School for the Blind last night for a launch party of a friend's new company--Visual Vitality. (If you want to learn more, visit their site at

Telling my story and talking to people afterward has given me a desperately needed kick in the butt to re-devote myself to this blog and my book.

I was given 5 minutes to speak and I wanted to make sure I didn't ramble so I wrote some stuff down ahead of time. This is, more or less, what I said:

I’m thrilled to be here for the launch of Visual Vitality. My friend, June asked me to speak today as a representative of people with invisible disabilities.

So, here’s my story:  I was just going along, living my life as a fully abled person, not really cognoscente of that fact that everything could change at the drop of a hat until…well…until everything changed. One Wednesday morning in August of 2007, I woke up nearly blind in one eye. I assumed it was pink eye or the result of something equally innocuous. It took three days, a dozen specialists, and hundreds of thousands of dollars in tests later (thank God I lived in Boston and had health insurance) to learn the cause of my sudden vision loss.  After hours going back and forth between MGH and the Mass Eye and Ear Emergency Room, Dr. Kenny Chang, pulled me into a private room to give me a diagnosis.  Now I’ve watched enough Gray’s Anatomy to know it wasn’t good news. They can tell you about negative results in the hall. And I was right. I had MS--Multiple Sclerosis.

Until that day—September 1, 2007—I knew almost nothing about MS. I thought everyone with the disease was in a wheelchair or would be soon. I didn’t know that MS could affect any part of the central nervous system. For me, it was and is my optic nerves. My vision deteriorated still more and, before they were able to stop the progression, the damage had been done. You see, MS attacks the myelin coating over our nerves, I think of it like a big ugly rat eating the plastic cover on an electric wire. When the nerve is exposed, there can be permanent damage. For some, it’s the spine (hence the wheelchair) and for others, it’s the optic nerves. I once heard that if you put a hundred people with MS in a room, they would have 100 different sets of symptoms.

In the last 7+ years, I’ve learned a lot about Multiple Sclerosis and living with low vision, including that people don’t always know. As I often say to people who tell me I don’t look like I have MS, it’s not a disease of the face. I no longer drive, I read large print, and sometimes I have balance issues and trouble navigating unfamiliar or crowded spaces. But I don’t wear a sign or use a cane. And if I don’t need a cane, should I have to use one for people to make reasonable accommodations for my disability?

When I go into a doctor’s office and they hand me a stack of forms to fill out, I always ask them if they are available in large print. They usually aren’t. Most medical staff are more than happy to read the forms to me but that’s not what I asked for. I learned how to read at 4 years old and I want to read them on my own. And I should be able to. The technology exists to make that possible for me. Why not hand me an iPad where I can make the forms the size I need or listen to an audio recording of the medication side effects myself? What if doctor’s offices and other businesses could be trained about how to provide this kind of equal access to people with disabilities?

I am not bitter and I do not feel sorry for myself. I believe that MS is a gift in my life. I’ve learned so much about myself and the world, I’ve met amazing people in the MS and other disability communities, and I believe I am a better person because of my MS.

People with disabilities—minor or major—want to fully participate in life. Sometimes we need accommodations to make that possible. Visual Vitality is going to help everyone get the equal access promised by law.

Thank you very much and congratulations Visual Vitality. You’re doing important work.

Watch this space. Lazy Julie is BACK.

Thursday, August 29, 2013

MS Challenge Walk Training Pics

I have been logging many, many miles in my purple sneakers training for the MS Challenge Walk. Ruby has been walking, too, but she also joined her high school cross country team so she is doing more running than walking lately. I sincerely hope she doesn't break into a run on the Challenge Walk. If she does, she is on her own since I have determined that running is not for me. I walk pretty fast (usually a 15-minute mile) but I only run if the train is leaving or someone is chasing me.

Here are some pics from various training walks.

Beach walking

Dusky sky on evening walk

Sunset on a local walk

Walking at the Ponkapaug Bog was challenging and beautiful.

Ducks at Turner's Pond

this bench at Turner's Pond always reminds me of my Dad., not sure why but I love passing it when walking about the Pond.

I love seeing the light change throughout the day at places where I walk regularly

I have a love/hate relationship with walking at dusk. The light is BEAUTIFUL but it means it's getting darker and I may have a hard time seeing on the way back.

Kites on Nahant Beach.

Cattails at Ponkapaug

Beauty at the Ponkapaug Bog on a walk with The Librarian
One of my epic local, getting lost with the Google navigator woman telling me to take U-turns.

The kids and I after a training walk where Z road his bike, I power walked, and Ruby alternated between keeping up with me and whining about how I was too fast. Please remember, this is a girl who RUNS.

I love walking on the bike path. I NEVER, EVER get lost. :-)

Dorchester mural

Turner's Pond. I love meeting Helene and Rebecca for early, early, early walks.

I always say hi to the office park swans on my lunchtime walks.

Monday, August 12, 2013

MS Challenge Walk Training in the Woods

I did an awesome MS Challenge Walk training hike/walk on Saturday. Diane the Librarian took me on on one trail I knew and a few I didn't know in the Blue Hills. Do you want to know a secret about hiking? It's basically walking in the woods. According to my cell phone pedometer, I walked a total of...drum roll, please...

The Boardwalk in the Ponkapaug Bog was gorgeous, we walked through moss, honeysuckle, blueberries growing overhead. It smelled fantastic and the wobbling boards made it exhausting walking.

There's isn't a bad view in the Blue Hills. I feel incredibly blessed to live so close to such a beautiful natural setting.

  I love taking photos of reflections.
The bog boardwalk went on forever. We wondered about who maintains the boards. I pictured volunteer carpenters lugging boards out to the bog.

Cattails growing by the Ponkapaug Golf Course. The Librarian was not amused when I threatened to yell "Four" (or is it "Fore?" at the golfers.

The boards on the bog boardwalk were very wobbling. I understood why Zane came home with wet shoes after walking there with a bunch of kids from the AMC Camp.

Waterlillies and other nameless, but beautiful flowers growing wild in, on, and around Ponkapaug Pond.

We started and ended our hike at an Elementary School parking lot at the edge of the Blue Hills. I made Diane pose for this picture because I was exhausted by the end of our walk and wanted to rest for a minute. We were definitely idling.

Thursday, August 08, 2013

The Ride to the Bracelets

I love my job but I have a very long and sometimes difficult commute to and from work everyday on The Ride, which is the Boston-area public transportation service for people with disabilities (a.k.a. The Short Bus).  I started Tweeting to pass the time today. If you're on Twitter and are interested in reading my Tweets from The Ride follow me: @TheRideTales. Today was kind of boring, but I swear it's not always that way! I've been entertaining my Facebook friends with my crazy stories for a couple years. Maybe The Ride heard I was tweeting about them and they shaped up their act today. The power of social media!

Although my commute home was only an hour and 20 minutes today (it's been as long as 2 1/2 hours), I came home kind of worn out. I was thrilled to walk in the door and find a package addressed to me!  Who doesn't like presents in the mail? Inside today's package was a plethora of "Join the Movement" bracelets from Aileen at the Greater New England Chapter of  The MS Society. I plan to sell them for $1 each at our 8/31 Yard Sale to benefit the MS Challenge Walk.

If you live in my area, and want to drop off stuff for us to sell at the yard sale, drop me a line! 100% of the proceeds will go to our fundraising goal for Fish Out of Water, our MS Challenge Walk team.

Wednesday, August 07, 2013

Good Orange Morning!

Orange is the color of MS Awareness. Ruby and I will be getting orange mani/pedis for the MS Challenge Walk in just 31 days.

Here are some orange tunes to get you in the mood:





Have a great day!

Tuesday, August 06, 2013

MS Challenge Walk Fundraising Progress

Ruby and I are hard at work training and fundraising for the MS Challenge Walk on Cape Cod, September 7-8. Thanks to the generosity of our friends and family, our Fish Out of Water team has reached the 20% milestone on the way toward our goal of raising $3000 for the MS Society!

Have you made your contribution yet? Remember, no donation is too small and, if you have no money to spare, not to worry. We are also happy to receive your moral support in comments, calls, and messages. And, local friends can contact me about dropping off their hand-me-downs and cast-offs for our yard sale to benefit the MS Challenge Walk, scheduled for August 31.


Monday, July 29, 2013

These Feet Were Made for Walking the MS Challenge Walk!

My beautiful daughter Ruby and I, have decided (about six weeks before the event) that we are forming a team to do Walk MS, The Cape Cod Challenge Walk to raise money and awareness for the MS Society.

As some of you know, I crewed for the event last year. Well, I have decided that I need to get out there and form a few blisters of my own and Ruby has graciously volunteered to join me. Since I know you are incredibly impressed and anxious to learn how you can join the fun, here are your options to participate and/or support the "Fish Out of Water" MS Challenge Walk Team:

 #1 Walk with Ruby and me! Each walker has a $1500 fundraising commitment which we will help you reach. You walk 50 miles in 3 days with a ton of support from the MS Society. It's September 6 - 8, 2013 on beautiful Cape Cod. 

#2 Crew for the weekend event.  You pay a $75 registration fee. You still get our team T-shirt and you get to stay with us at the amazing Cape Cod Sea Camps. You will be put to work to support the walkers, but I did it last year and it's a lot of fun. 

#3 Become a 1-day Volunteer for either Saturday or Sunday to help out where needed. Again, you will still get our team T-shirt and my gratitude. 

#4 Sponsor us or attend one of our FUNdraising events!

Watch this space for details and a pledge link as soon as I pay my registration fee or email me with questions about how you can join the team!

Thursday, January 31, 2013

A Little Bit of My Kind World

WBUR, Boston's NPR station, has a new series called Kind World. The website describes it best:  "Kind World is a Tumblr that celebrates the kindness in strangers and the profound impact one human can have on another."

When they were looking for stories several months ago, the producer, Nate Goldman, asked a question about random acts of kindness on WBUR's Facebook page. I was surprised when my comment resulted in the Nate contacting me to see if he could record my story.  A couple days ago, several friends contacted me to tell me they thought they heard me on the radio. Here it is! (Please ignore the really bad haircut in this photo. My current hairdresser, Theresa at Eclipse, would be horrified.)

Now tell me your own story of a random act of kindness that changed your life...or maybe just your day.

Saturday, January 05, 2013

Two Pints Down

I donated blood today. Two pints, in fact. So what? Well, I'm not ONLY mentioning this little tidbit to share an unflattering photo and brag about a selfless act of generosity. I gave blood today because I am no longer on the "can't donate" list.

Shortly after I was diagnosed with MS, I tried to give blood. I think it was at a work blood drive. When I skimmed the eligibility requirements they asked me to review and sign before sticking me, I was shocked to see Multiple Sclerosis on the list of diseases that were exclusionary factors for donating blood. HIV/AIDS, Hepatitis, and Multiple Sclerosis. There were probably several others on the list, but I stopped reading after seeing MS. HIV/AIDS and Hepatitis I understood, but MS???? I was really pissed off. What idiotic bureaucrat thought that MS was a contagious disease that could be transmitted by a blood transfusion????  After the anger, came the shame. I felt like my blood wasn't good enough for the Red Cross refrigerators. I was diseased and unworthy.

I think that may have been one of the first and only times I was really ashamed of my MS. I started this blog and went public with my diagnosis right away. I felt a strong need to share honestly, hopefully, and, whenever possible, humorously, about what was going on with me. but I also felt a responsibility to do what I could to remove the stigma and misconceptions associated with this disease. I didn't feel like I had anything to be ashamed of until that Red Cross donor information sheet told me that my blood was tainted.

A couple years later, I read a post somewhere about how the American Red Cross used to prohibit people from donating blood if they had MS, but that they had changed their eligibility guidelines in 2007. According to the MS Society, they did this rather quietly but I don't think they did a great job disseminating those eligibility changes to their field offices. Doing a quick Google search for this post, I found several offices that still list MS as an exclusionary factor in the "serious illness" section, including Northern OhioArizona, and the Red Cross guidelines distributed for a Princeton University blood drive.

The eligibility requirements now posted on the national American Red Cross site no longer even mention MS, which means that it is, rightfully so, no longer an exclusionary factor. When I gave blood today, they asked me many, many questions including whether I had been incarcerated (not yet), had sex with a man who had sex with a man (definitely not in the 12 month period they asked about), and had I recently had any piercings or tattoos (never with unsterilized needles and not in the last 12 months) but no one asked me about my MS.

I am worthy and I couldn't be happier. Although I opted for the gluten-free fruit snacks, I proudly wore my sticker all day today.

Sunday, November 04, 2012

Fashion Plates Photos

Thanks to the MS Society, Salon Red, The Fashion Plates Committee, Lori Grande, ASA Photographic, my fellow models, and my beloved guests--Ruby, Laurie, Christina, and Jean--for making this a fabulous day for me.