Monday, November 11, 2013

Fashion Plates

Fashion Plates is a fundraiser for the Greater New England National MS Society, which was held November 8th at the Sheraton Boston. I was fortunate to be invited to this wonderful event by the National MS Society.  All of the women at my table were invited for their participation in Walk MS and the Challenge Walk.


The day started with a reception where wine and mimosas were offered. There was a photo collage on display from last year's event and wonderful raffle prizes, 9 in total.  There was a sports gift basket with a football autographed by the Patriots, game tickets, memorabilia and equipment, a gift basket of $1000 worth of scratch tickets, an indulgence basket with spa treatments and a gift basket offering Lasik surgery, by the office I go to for my eye care, which I thought was extremely generous. I entered once for the indulgences gift basket and two entries for the scratch tickets twice, but didn't win. I was hoping I could write a blog about becoming a millionaire instead! ;)

The event was hosted by Lori Grande, co-host of  the "JW and Lori in the Morning” show on Country 102.5. Lori herself has MS and told us how much she enjoyed hosting the event in years past and was glad to be back.  We were served a delicious corn chowder soup, quiche and a green bean salad for lunch and a decadent chocolate banana torte for dessert. At each table setting was a party favor of pink cookie in the shape of a dress. It was adorable and delicious!



There were three parts to the fashion show and each model participated in all three sections with three different outfits and hairstyles. All of the models have MS and have amazing stories which was shared with us as they walked the runway. The models were also of all ages and progressions, which was great to see. The fashion show featured clothing lines from Ports & Co., a store in Cohasset, MA. They have beautiful clothes for everyday and special occasions.

The ballroom was filled with more than 600 people, all supporting MS research and finding a cure. It was a very special event, I am so glad I joined for this event! It is a day I will never forget!




Thursday, October 3, 2013

I've Been Published!


It has been a lifelong dream of mine to have my writing published, and now I am thrilled to say I have been published in two anthologies. I have enjoyed writing for most of my childhood and adult life. Whether it was writing a letter to a pen pal (at one point I had over 100!), a poem, a work of fiction or making a zine with my best friend in high school, writing has always been an important part of my life. After my diagnosis I decided to combine my passion for raising MS awareness with my love of writing.  I also love reading, which is fortunate since I part of two amazing anthologies. The other pieces in both of these books speaks to all us, whether we have MS or not. I think with the holidays coming before we know it, these both would make great gifts.
The first anthology is called Something On Our Minds which consists of many essays and poems from a group of writers called We Write for the Fight.  My piece is about my journey with MS, the ups and downs I've had and things I've learned along the way.   

The second anthology is called Touching MS and consists entirely of poems. I have two poems in this book and all of the poems are broken up into categories: Diagnosis, Pain & Anger, Questions and Confusion, Acceptance, Longing, Hope, Kinship, Humor and Gone, But Not Forgotten.
Proceeds from both books go to the National MS Society and can be purchased on Amazon.com. If you are also a writer, both anthologies are planning a Volume 2. Maybe I will see YOU in the next volumes?! 

Friday, August 16, 2013

Bike MS - A Guest Blog by Caroline B.



This month I have a guest blogger, my longtime friend, Caroline. She participated in Oregon's Bike MS in my honor last weekend. When I asked what her experience was like, this was her very touching response:

In February of this year, I participated in my first organized bicycling ride, "The Worst Day of the Year Ride", in Portland, Oregon.  This ride was created to be a fun event held on what is, supposedly, statistically, Portland's worst weather day of the year.  After I finished the ride, I encountered a booth full of flyers for several upcoming organized cycling events.  One flyer in particular caught my attention--Bike MS.  I first was drawn to this ride because of my longtime friend, Caroline Kyriakou, who was diagnosed with Multiple Sclerosis a few years back and has since been very active in the MS community, including leading her own Walk MS team in her hometown of Boston.

I must admit that my decision to participate in Bike MS, in part, was for personal and somewhat selfish reasons.  As described in the Bike MS flyer, the ride was a two-day cycling event held in August.  Both days of the ride began in the small college town of Monmouth, Oregon (home to Western Oregon University), ran through scenic parts of rural Oregon, and then looped back to Monmouth at the end of that day's ride.  So, in addition to supporting a close friend's cause, I thought it sounded like a lovely idea to be able to challenge myself physically by cycling some to-be-determined, large number of miles through beautiful parts of Oregon during the state's brief sunny season!  I grew excited, yet nervous due to the length of the ride, about the possibility of participating in Bike MS.

For months after The Worst Day of the Year Ride, the Bike MS flyer remained on the floor of my car, where many a flier has been left until its day of doom--the time it finally meets my recycle bin.  However, some part of me couldn't bear to part with the Bike MS flyer.  Perhaps it was the part of me who knew that the athletically un-inclined and inexperienced cyclist in me could actually finish a bike ride longer than anything I had previously fathomed.  Perhaps it was my friend Caroline telling me that I, too, could become active in the MS community and could make a positive difference!


Never one to be stingy by keeping physically-exhausting workouts to myself, I sought to enlist a partner with whom I could share this experience.  The length of the ride scared off my boyfriend Ben, so I asked my physically-fit friend and colleague, Deb, to join me.  Like me, Deb was a relatively inexperienced cyclist, but was up for the challenge!  Once I had found solace in finding a cycling buddy, I finally made the commitment by signing up for Bike MS in June, and became part of a very warm Bike MS Oregon community.

Prior to the date of the Bike MS ride, the National Multiple Sclerosis Society (NMSS) Oregon Chapter held multiple welcoming events.  At a Happy Hour Meet and Greet, the staff at the NMSS were more than willing to answer my numerous questions and set my mind at ease about the length of the ride.  With their help, I was able to raise more than double the minimum fundraising requirement by fully utilizing my Bike MS fundraising webpage.  I was also informed of an upcoming 52-mile practice ride, which at that time, was longer than any ride I had completed.  To gain more cycling experience, I decided to participate in the practice ride.  As the only woman, I brought up rear of the cyclists, but the participants and support staff were phenomenal in helping me along this challenging ride, waiting for me to arrive at all rest stops and serving as my cheerleaders along the way. 

The next phase was the actual Bike MS event itself.  Bike MS offered six routes of different lengths over the event's two days and, by then, Deb and I had finally agreed that we would ride 100 miles in total.
 
On the Friday evening before the ride, Deb and I drove the one-and-a-half hour drive from Portland to Monmouth and checked in to our rooms at beautiful Western Oregon University, which graciously lends its campus to Bike MS each year.  Early the next morning, Deb and I set out on the longest ride either of us had completed, 64 miles.  We rode a scenic loop, heading east from Monmouth, through rural farming communities and wineries.  The last ten miles were particularly challenging for me, but I kept my friend Caroline in the forefront of my mind and, by the time Deb and I crossed the "finish line" (in quotes because Bike MS is a ride, not a race), I was near tears, overcome by my own physical fatigue and with emotional empathy for others who take on the challenges of MS on a daily basis.

Following the first day's ride, we were welcomed back with a barbeque dinner, an inspiring guest speaker, and live music.  Deb and I enjoyed our dinner while getting to know three other people sitting at our table and learning their stories.  We were amazed by guest speaker Maureen Manley's story, who, when in her twenties, was a world-class cyclist headed to the Olympics.  She began developing symptoms, starting with impaired vision, which forced her, albeit reluctantly, to focus on her health rather than on her Olympic dream.  It turned out that Maureen was experiencing early symptoms of Multiple Sclerosis.  Despite this, Maureen never gave up her cycling dream.  She rides frequently and I was surprised to learn that she had ridden that day's course with us!


For the second day, Deb and I had planned to ride the 35-mile route.  But after making a simple calculation (64 miles + 35 miles = 99 miles, just one mile short of 100), Deb convinced me to venture out on the 50-mile route instead.  After a lengthy ride on Day 1, the second day's ride felt more challenging, but it was well worth it!  The route headed south from Monmouth, through both barren and forested land.  I felt so grateful for Deb having encouraged me to challenge myself with this longer route because, as I approached the halfway point at Chip Ross Park, I was surrounded by a breathtakingly picturesque, tree-lined landscape.  Soon after entering this beautiful area, however, I was also greeted with a 500-ft climb in elevation over a one-and-a-half mile period.  Pedaling up this hill exhausted me!  At several points, I wanted to stop and rest, but I convinced myself to persevere until I had reached the top of the hill.  After fifteen minutes of I-could-walk-faster-than-this pedaling, I had finally reached the top.  Following a brief rest with my fellow exhausted cyclists, all trying to catch our breaths, I headed down the opposite side of the hill.  For me, this was almost as tough as the ride up, as I did my best to safely navigate the curvy road at speeds nearing 30 miles per hour.  The ride on Day 2 wound down with one last rest stop along the beautiful Willamette River, followed by the final stretch back into Monmouth.  Even more difficult than the steep hill at the middle of the ride, the last few miles proved a serious mental challenge for me.  To make it through, I surrounded myself with constant positive talk for the entire final seven miles of the route.  As I reached the finish, I was welcomed back by name over a loudspeaker and, again, nearly brought to tears from exhaustion.

In preparing for Bike MS, I grew to learn quite a bit about myself and how to make long rides more enjoyable.  Of course, it is essential to stay hydrated with water and energized with food, but I learned the specific intervals at which I need to make this happen for myself, in order to have a successful ride.  The wonderful people at Bike MS put together a highly-organized and fully-stocked event, accompanied by the kindest and most supportive staff.  I appreciated the very frequent rest stops that provided not only water and electrolytes, but the most delicious and nutritionally-balanced rest stop food I have ever had!  Even for a picky eater like me, there were several options for all types of palates.  (My favorite were the peanut butter and banana sandwiches made on local whole-grain Dave's Killer Bread.  Yum!)  Additionally, I consistently felt supported during the ride, from the cheerleaders' warm welcomes at each rest stop, to the multiple bike mechanics riding the route, helping those with flat tires and other mishaps, to the support staff driving the route to make sure that no cyclist was left behind or was without water.  This year's Bike MS event in Oregon involved nearly 600 cyclists, riding thousands of miles, raising over $400,000 (and donations are still being accepted for this year's event until the end of September), and was supported by over 250 volunteers--all to help make a difference in the lives of those living with MS!


I feel lucky to have been personally introduced to such a warm community with such an important goal--to STOP MS in its tracks, RESTORE lost function, and END MS forever!  The staff and volunteers at the Oregon chapter of the NMSS have taken great care of me, and I can only imagine how hard they work to help those who are more directly affected by MS.  When it was announced during the evening program on Day 1 that sign ups were now available for next year's Bike MS, Deb and I jumped at the chance.

From February to August, I participated in four different organized cycling events and, by far, Bike MS has been my favorite!

There are roughly one hundred different Bike MS events of varying lengths all over the country.  And there is no excuse not to participate--there are activities for all ability levels.  Participants, including older children, can ride their bikes along short or long routes.  Or leave the bikes aside and take part in the day's alternate events at the Bike MS village, including yoga, swimming, and massage.  Bike MS is sure to benefit you as much as it benefits those with MS in your community!  I hope to see you in 2014 at Bike MS!

 

Saturday, July 20, 2013

Inspiring Others to Raise Awareness

For 5 years I have participated in Walk MS. Family and friends walk with me showing their support and offering their encouragement. Others make generous donations. But for the first time, a longtime friend, also named Caroline, has formed a team in my honor and is participating in Bike MS Portland, Oregon! I was so touched when Caroline told me she was doing this and in awe when I heard that the ride is 2 days! Bike MS is August 3-4th, so just a couple weeks away. Caroline named her team Kaliope Oregon after my Walk MS team, Team Kaliope.

Caroline is showing her support in a whole new way and is not only raising awareness for Multiple Sclerosis, but raising funds.

The money that is raised for the National MS Society is so important and helps many people. If you would like to donate to Caroline to support her efforts, click here to get to Caroline’s secure webpage.


Caroline and I have been friends for about 20 years, originally becoming friends through pen palling. We would write pages and pages to each other (sometimes close to 20 pages!) talking about everything. Through the drama of high school, boyfriends and parents we would support each other and offer advice. Now, years later Caroline is showing her friendship in such an amazing way. We have met a few times (three times, I believe) when Caroline visited Boston and now keep in touch through email. I have yet to visit Portland, but hope to get out there someday.

Through thick and thin Caroline and I have been there for each other long distance.  I know when I am walking for Walk MS, Caroline is there with me in spirit and in a few weeks when she is biking, I will be cheering her on from across the States!

Saturday, June 29, 2013

Celebrating Multiple Sclerosis

July is a very significant month for me.

July marks my 7th MS anniversary and my 5th Tysabri anniversary.  The days surely do fly by. I can’t believe it has been 7 years since my diagnosis. It feels like just yesterday I was in the hospital not knowing I was going to be diagnosed with Multiple Sclerosis.  I actually do not remember the exact date I was diagnosed, but I was released from the hospital on July 4th – Independence Day and always celebrate then. Shortly thereafter I received my diagnosis, I heard those 4 words that turns everything upside down: “You have Multiple Sclerosis.”

At times I still think maybe there was a mistake; maybe I don’t really have MS. That’s the tiny part of me that is still in denial. A lot of people question “Why me?” but I read someone asked “Why not me?” I really like this saying. I often think of the way I have handled my diagnosis and realize now that I handled it very gracefully. After my diagnosis I never cried, which is kind of strange since I am a crier, but instead wanted to know what I could do to be in as much control of this disease as possible.

Now 7 years later, I contribute the slowness of my progression to starting on a disease modifying drug very quickly, but mostly for choosing to take Tysabri after Avonex stopped working for me. Since starting Tysabri  5 years ago, I have not had a relapse or too much worsening of my symptoms. Of course, I do have daily symptoms and some days are worse than others. But, I know how much worse my MS could be, and I am very thankful for all the functions I still have control over.

As much I would rather not have MS, I am grateful for the many positive things MS has brought into my life. Each year I lead my family and friends in Boston’s Walk MS, which I find to be a very inspiring event. I have found a passion for raising awareness and am doing that by writing this blog, mentoring those newly diagnosed and pretty much making my voice heard to anyone who will listen. I also have made some amazing friends, some with MS and some without, that I wouldn’t have otherwise met. That is the most precious gift MS has given me.

So, this Independence Day not only will I celebrate the United States, but will also celebrate the positive gifts MS has given me.  When you are watching the fireworks this 4th, maybe you will think of me for a moment and celebrate with me. Have a safe and happy July 4th!

Wednesday, February 20, 2013

Walking All Over Multiple Sclerosis


On April 7th I will be participating in Boston's Walk MS for the 5th year leading Team Kaliope.  The first year I joined I didn't know what to expect. When I entered the Harvard Stadium I was overwhelmed  by the sight of thousands of people.  We were all there for the same reason, but I was overcome with emotion because of my diagnosis.  Every year Abe and my sister Annie have walked by my side and friends have joined to help encourage me.  Having them walk along with me has been so important and appreciated.  The day starts off with everyone registering and Anthony Everett, a reporter for a local newsmagazine Chronicle, making a welcome speech. There are booths with information about MS, MS drugs and other supporters.  Once the walk is kicked off, we walk around the Charles River for either 3 or  5 miles. Everyone meets up back at the stadium where there is lunch.

Last year I was in the top 12 fundraisers in Boston! This year I hope to be in the top 10! If you would like to help me achieve this goal, please click here to get to my secure personal page to make a donation of any amount. Every dollar counts! In the past years I have tried to come up with fun ways to fundraise and have hosted several parties, such as Tupperware and Stella & Dot. Last year I hosted a dinner with friends at California Pizza Kitchen which donated a percentage of the bill. I also had Q&A printed in the local Brookline TAB newspaper.  I was so glad to bring awareness to MS which has become a passion of mine, and was thrilled when some of my patients (I work in a periodontal office) said they saw me in the paper!

This year I am hoping for nice weather, which we mostly have had in years past. I am especially hoping for no rain -- or snow! I have met many people along my journey and it is always so nice to see so many familiar faces at the walk. I always document the event with many photos to help share with friends and family, especially those who have donated.

Walk MS is really a special event, and if you haven't participated before, I suggest you check your local National MS Society chapter. Walks take place all over! I hope you will find the walk just as magical as me and together we can walk all over MS!
 

Wednesday, February 6, 2013

Running Shoeless Through the Airport with the "Awkward Bitch"


I had a last minute opportunity to take a vacation to Florida. At first I was a little hesitant since I was just there in October, but my friend, Barbara, who invited me, and I found really cheap flights. It was meant to be! I left on January 27th and spent the week in sunny Orlando. On the way to the airport we were delayed going through security, I am not really sure what it was due to. It was just busier than usual. Well, just as Barbara and I get through security, we realize that there was no time to even put our shoes back on. So, we go running through the airport to get to our gate. Just as we are approaching we hear the final call, and 2 flight attendants see us running. They ask which flight we are on and I shouted "Orlando." I keep running and as I make my way around the corner to our gate another flight attendant yells for us to hurry up. I wanted to scream "I have MS and am going as fast as I f**king can!" We got on the airplane, still shoeless, but we made it. There actually was someone else who got on after us! Go figure!

Barbara and I stayed at Disney's Saratoga Springs again, but this time the Spings resort. Our room was on the first floor right near the entrance. The Springs was located very close to the main swimming pool, which we enjoyed a few times. :) The week was very relaxed. We enjoyed nice meals, a few that we made ourselves, movies (I got to see FernGully for the first time) and there was time to do little shopping. I was very happy with a skirt I bought for $8! I love a great deal! I also had time to read. More on that later. We didn't go to the Disney parks but were able to spend time in Downtown Disney. You may remember from my previous blog My Florida Vacation that there was a hot air balloon that I loved. Well, it was still there and again we were able to see it from our room. I had a goal of conquering my fear of heights and go in the hot air balloon, but didn't have a chance to do it. Next time!


As I mentioned earlier, I had some time to read and brought "Awkward Bitch: My Life with MS" by Marlo Donato Parmelee with me. I really enjoyed this book. Marlo, like myself, loves being fashionable. I always try to look my best and I wear make up every day. Whether MS gets in the way or not, I like to look my best! Marlo works in the fashion world and would always try to wear 4 inch heels. I usually can only wear up to a 2 1/2 inch heel so I applaud her effort. Marlo moved from the States to London with her husband to follow their dreams of being a musician. It was after this move that her symptoms started, including vision and balancing problems. It was quite a delayed diagnosis - she actually had pretty much diagnosed herself before hearing it from the doctor and it took a while for her to be able to start a MS therapy. For many, this is a common story. I am so fortunate that I got my diagnosis so quickly, within a month and was able to start a therapy a couple months later. Marlo has many talents in addition to a keen eye for fashion, including being a musician.  Marlo is funny and the book flows really well. The book is inspiring as Marlo continues to follow her dreams after her diagnosis and is even able to use her talents to spread MS awareness.  Plus, it was printed in a larger font, which helps us MSers! You should check out her book and I hope you enjoy it as much as me. I would love to hear what you all think of it.

Let's hope I never have to run through the airport shoeless again, but I am glad I had the "Awkward Bitch" along with me to keep me entertained this time!