Saturday, November 26, 2016

Fashion Plates 2016: A look backstage


Earlier this month the Greater New England Chapter of the National MS Society hosted their annual fashion show fundraiser, Fashion Plates, at the Sheraton in Boston.
A friend asked if I would volunteer to help backstage. I was happy to say yes, and am so glad I did. 
It was a really fun day to be with friends, and make new ones. The room was beautifully decorated and each table had a different set of flowers. I happened to come across table 20, so had to take a picture since I was born on the 20th (of March).  
 
 
 
 
 
 
Me and Lori as she gets ready to walk the
runway
Me and Lori before the show
I was especially excited to finally meet Lori Grande. You may recall I did an interview with her for a previous blog in 2014 called MS Warrior: An Interview with Lori Grande. We had both attended Walk MS Boston earlier this year but with the amount of people attending, we were not able to spot each other. Lori is kind, encouraging, inspiring 
and so easy to talk to, just as I thought she would be. We bonded over the love of our nieces!










Those shoes!!!
In the red lipstick
by Danielle Keefe
The NMSS hosted over 650 guests and raised well over $120,000! They had wonderful raffles, I especially liked the one with the shoes from Sarah Jessica Parker. There were other great ones too, and local business had booths. I personally enjoyed the display by Danielle Keefe. She volunteered her time to help the models with their make up and after the show was at the booth. I tried on a beautiful red lipstick called "Glamour Puss" and later bought it online after I received so many compliments on the color. Check out Danielle Keefe Artistry. She has many beautiful products and colors. I love supporting local businesses, especially when they support ending MS!
 






The whole day was a lot of fun and it felt great to help the NMSS with one of their fundraisers. I hope one day to model in the show, but until then, I am happy to volunteer again. It is always great being around people who are all there for the same reason... to help find a cure for MS!
The beautiful models as they get ready for finale on stage:
champagne toast!

Sunday, July 31, 2016

Why Do You Bike MS?

Caroline B (left) and Me around 2003
It has been quite a few months since my last post. Most of you will understand that it can be quite difficult to find the energy at times to sit down at the computer for extended periods of time. Boston has been having a heat wave - as I think a large portion of the US has - and that makes it even more difficult to want to do anything really.
 
I wanted to make a special effort though, to tell you about my friend Caroline B. who lives in Oregon. For the 4th year she is participating in Bike MS, partially in my honor. She is a strong, caring and amazing woman that I am proud to call my friend. She has also found a passion to find a cure for MS and I am inspired by her, and all the Bike MS participants.
 
Below is Caroline B in her own words and if you feel you would like to donate to Caroline's efforts to fundraise, please go to her personal, secure page here to do so. Bike MS Willamette Valley is August 5th to August 7th. There are many routes that can be taken depending on how many miles you choose to ride. Here is more information about the different routes, so you can get an idea of how much dedication this event takes. Find the route information here. The route passes through natural wildlife preserves, historic towns, farmlands and back roads of Willamette Valley's finest countryside. Doesn't that sound amazing in it's self?

Our story was also featured in the National MS Society's blog Defeat MS about a month ago. You can read it here.

Why do you Bike MS? 

Caroline Kyriakou and I started out as pen pals way back in seventh grade. We powered through the challenges of adolescence together, comforted by late-night hand-written musings (this was before cell phones, and long distance wasn't free back then), and the music of Tori Amos. But at the age of 26, my good friend encountered an entirely new challenge: Multiple sclerosis (MS). For Caroline, MS has produced a myriad of roadblocks--extensive fatigue, vision abnormalities, and intermittent trouble with walking even short distances.

Rather than being overwhelmed, Caroline has decided to do everything in her power to find more effective treatments and a cure.
She leads a Walk MS team, started a support group, writes an online blog about managing through the disease, has been published in three books and even appeared on her local news station to share her story. Caroline’s relentlessness has inspired so many, including me. Her determination led me to take action. That’s why I joined Bike MS.

Through the event, I met so many incredible people, including those on Team Amulet. This friendly, generous, and dedicated team ride on behalf of their friend Kevin. He’s a husband and father with a gritty sense of humor and a smile that warms your soul, but Kevin faces the unknown. As of now, his body hasn’t responded to any of the available treatments for MS, and that breaks my heart. Kevin’s mobility is declining rapidly and his future depends on the development of new medications which, as you might imagine, do not come cheap. In fact, research is funded by donations—large or small—from people like you and me.


Caroline B at Bike MS in 2014
How You Can Help Caroline and Kevin:
Join me and Team Amulet in supporting the National MS Society as we work together to create a world free of MS. Any donation—large or small—will help in the fight against MS. I greatly appreciate your support!

"Never Stop!  Never Quit!"  — Team Aumlet Motto

Again, here is the link to Caroline's fundraising page.

*I would like to note that information from this post have been taken from Caroline B's fundraising page and Willamette Valley's Bike MS page.

Saturday, March 5, 2016

A Tysabri Break Up.... and a New Relationship


First selfie from my first Rituxan Infusion
In December I had my monthly Tysabri infusion and jcv test. But, I got the news that my jcv level jumped from .53 to 2.78. This means staying on Tysabri, my chance of getting PML was way too risky. (PML is a brain infection that can cause death.) It was the news I had always dreaded... I had to stop Tysabri after over 7 years. As most of you know, I love Tysabri and had not relapsed since starting back in 2008. Having to stop this medication was scary (still is!) and left me feeling uncertain about my MS future (still does!).
 
My neurologist and I discussed a few medication options, but decided Rituxan, which is not FDA approved for MS, would be the best choice. It all happened very quickly... I got my insurance approval and booked two 8 hours infusions 2 weeks apart. There is still a chance of PML with Rituxan (as it seems it is with most MS medications these days) but the chances are a lot lower,
 
I kept busy with selfies!
I had my first Rituxan infusion January 29th. The nurses gave me pre-medications of Solumedrol and Benadryl before starting the Rituxan infusion but about 2 hours in I had an allergic reaction, mostly hives, some itchiness and breathing issues, which is common during the first infusion. The nurses stopped the infusion and gave me some different meds (a different steroid & something like Benadryl) and once my reaction passed they continued my infusion. Abe had always come with me to all my infusions, but I told him since this one was so long, he might as well stay home. The Benadryl usually makes people sleepy (except for me since the steroids kept me awake!) so if I wanted to sleep, I could, and just do my thing. I brought snacks and magazines, though the infusion center provides lunch, drinks and each bed has a TV. So, I was pretty well set, and with the nurses checking in on me and taking my vitals every 30 minutes, I definitely was not lonely. I planned for my best friend to meet me for the last few hours, so I also got to have some time with my friend and she then gave me a ride home.
 
Following the first infusion, I did have some side effects but mostly had some breathing issues and headaches. My neurologist ended up giving me a prednisone taper and that seemed to help after a few days.
 
Infusion #2
I had my second infusion on February 12th which also was my last day of taking the steroid taper. I had the infusion without any reactions, which was great. The infusion was slightly shorter - about 6 1/2 or so hours since I didn't have any reaction.  However, at home I started to have awful headaches, pretty much migraines. They started to get so bad, the only thing I could associate it with was the spinal tap headache, which I had experienced back when being diagnosed.  I spoke with my neurologist and he again started me on another round of steroids, which I was so thankful for, even though as you know steroids aren't fun. The headaches got so bad that I called out of work but that was the day I started the new round of steroids and they kicked in right away. I now have a few more days of the steroids before tapering off completely. The headaches are not as bad as they had been, and I am just getting my "normal" headaches. I am having trouble with my mouth at the moment, irritations on my gums. I work in a dental office, so I was able to have the area checked. Right now I am waiting for my mouth to heal, but it makes eating difficult which is tricky since the steroids make me want to eat everything in sight!!
 
At this point, the next infusion would be in another 6 months. I have to wait to see if the medication works as it is suppose to, and then get re-approved through my insurance. Honestly, since it has been pretty much over a month of not feeling well since my first infusion, I am not sure I want to continue this medication. I think I will give one more try and see how it goes. Luckily, the next  infusion is just one day and that should be easier on my body.
 
As I mentioned earlier this medication is not approved for MS, but it is thought to kill off the B cells, which makes the T cells not able to attack the myelin. At least this is my understanding. To learn more about Rituxan go to their website or to learn more about Rituxan and MS check out this article from MultipleSclerosis.net.
 
So, now I am just waiting to get back to my "new normal" and after feeling unwell for over a month. This really can not come soon enough! Especially with my birthday a couple weeks away. I want to be able to eat my cake and enjoy every bite!! Till then....
 

Tuesday, February 9, 2016

Summit Dinner for the Accelerated Cure Project for MS

Laura Kolaczkowski and Me
Abe and Me
Abe and I were invited to join a group for the Accelerated Cure Project for MS' summit dinner on Friday, January 15th. We were not able to join for the actual summit (we went to the Museum of Fine Arts!), which was the next day, but were thankful to have joined for the dinner.

It was wonderful to see Laura again, who I worked with on Something On Our Minds Volume III, and to have met some new people involved with ACP.

The dinner was at The Colonnade Hotel's Brasserie Jo restaurant. Abe and I had not been there before, but enjoyed a cocktail hour before being served a delicious dinner followed by a trio of dessert samples. Of course I took pictures!

We seated ourselves at a table that we happened to share with a few of the contributors to SOOM Volume III and Gina Ross Murdoch who is the new CEO of the Multiple Sclerosis Association of Amercia (MSAA). It was a great honor to meet her.

We had a great night and are always happy to have a night out especially when it is for raising MS Awareness! (Note my cute orange dress -- the color for MS!)

The delicious dinner
The dessert trio









Monday, January 25, 2016

Something On Our Minds (Volume III)

Something On Our Minds Volume III is now available for purchase! I worked with 3 others - Laura, Tracy and Sean to put together and edit this anthology to benefit the Accelerated Cure Project for MS (http://www.acceleratedcure.org). It was a lot of fun reading the submissions and contributing 3 new poems of my own.

To see this book come together over time has been a real pleasure and a labor of love for all us. I am so thankful I was invited to help put together this anthology and am proud to have my name on the cover. I hope I can help to promote this book to be a great success. It is a real dream come true!

It was also a lot of fun having my MS friends also contribute to this book. Yvonne DeSousa,  Judy Crowne Olsen and Mary Pettigrew to name a few.

Abe was also able to contribute as by drawing a brain "dingbat" that was used throughout the book to separate paragraphs.

You can purchase SOOM Volume III on CreateSpace as well as Amazon.

Sunday, October 4, 2015

Fatigue, MS, Vacation - Oh My! (A Summer Tale)


The summer has flown by and has been filled with MS fatigue.  I am still learning how to handle MS even though it has already been over 9 years since my diagnosis. Once you think you have a handle on life with MS, something happens that just wakes you up and you once again realize life is ever changing with MS.

I was fortunate enough to go on vacation last month with some friends to Orlando. It was a great time, but after the 3rd day for 2 days in a row, I did way too much walking, with out taking many breaks. After the first day of a lot of walking, I didn't quite realize yet that I was over doing it, but knew my legs were tired. However after the second day of walking a lot, I still felt good enough to keep walking and walking and walking. Until I realized how exhausted I was... and realized I wasn't thinking ahead to how my body might respond. My friends asked if I was okay and if I wanted to keep walking, but I felt okay and said yes. Sometimes I just want to feel like I don't have MS and feel "normal" but pay for it later. I think I now learned my lesson that I really need to think ahead about how my actions will effect me later.
The next day, I took it easy and was able to enjoy the rest of my vacation. Of course, like all vacations it went by too fast. Now I am back to the routine of working and home life, and it feels like I was never on vacation at all!

For quite some time I have been struggling with fatigue. I have been on a medication the last few months, but I don't really feel like it is helping as much as it should. So, soon I will try another medication and see if it helps. It seems like so much with MS is trial and error and figuring out what works best for you. And it seems like this often changes. What has worked for you for months, or years, all of the sudden stops working and you have to start the trial and error process all over again. Fatigue I believe is the most common MS symptom. It really interferes with life. I am working full time and sometimes it is so hard to get through the day. I come home and all I can do is just become a couch potato. I so lucky to have Abe in my life to take care of me. I come home and dinner is made. I never have to do any dishes, though I do help put them away. I am hoping the new medication will help more than the one I have been taking. I do love coffee, but since I have trouble getting to sleep (it's a vicious cycle) my neuro has told me no caffeine after 2pm. Seriously, that is so hard! But, I do as I am told. I don't feel like it helps at all, but I figure cutting down on caffeine isn't a bad thing. ;)

I have been enjoying spending time with my niece, Melanie. She is growing so fast and is already 18 months old. She is starting to talk and walk and she has the cutest laugh! Over the summer I spent quite a bit of time with my sister, Annie and niece. We had a few adventures over the summer, including a memorable Labor Day weekend. A highlight from that weekend was taking Melanie to Chuck E. Cheese... she really enjoyed many of the rides! I love being an aunt! But, I am starting to see how MS is effecting me with my niece. As she grows, it is becoming harder for me to hold her and now that she is starting to walk, it is hard walking around with her. When holding her hand while she walks I find myself leaning over which is tough on the back... and she likes walking kinda fast, so it is exhausting! I try to play with her while she is sitting to make it easier for myself. But, as some of you may know, it's the toddler that is in charge! I do treasure all the time I get to spend with her, and so thankful to have my family close by.

I have also been spending the summer working on Something On Our Minds Volume III (see post Ready, Set, Write!) and it is almost completed. It has been a wonderful project to be a part of, and as we get closer to the release date, I will definitely be blogging about it!

The season is definitely changing in New England, and I am really looking forward to seeing the beautiful foliage in Boston. So, for now I am ready to say goodbye to the summer and hello to autumn!



Monday, June 29, 2015

Help 2 Carolines for the Price of 1


My friend Caroline Blackledge is participating in Bike MS in Oregon at the end of July.
She participates in my honor and is fundraising for the NMSS. Caroline wrote a lovely letter about our friendship and why she is biking to end MS. Please read and donated any amount you can to http://main.nationalmssociety.org/goto/carolinesbikems.

Help 2 Carolines for the Price of 1!
By Caroline Blackledge

I “met” Caroline Kyriakou (yes, we have the same first name), a Bostonian born and raised, as pen pals in the seventh grade.  And as we suffered through many adolescent trials and tribulations, while listening to a lot of Tori Amos, we grew to become very close friends.  I owe a lot to her for getting me through some really tough times!  We somehow survived those teenage years, but at the age of 26, Caroline would start on an unplanned path as she encountered an entirely new challenge.
In the summer of 2006, Caroline began having tingling and numbing in her left foot and knee.  Over the next few weeks, the tingling and numbing spread to her right foot, fingers, and torso.  Caroline sought medical attention and ended up in the emergency room where, after several days, she was diagnosed with Multiple Sclerosis, or MS.  There are several different forms of MS, but in addition to affecting the sensations in her extremities and torso, Caroline’s Relapse-Remitting MS has caused extensive fatigue, vision abnormalities, and intermittent trouble with walking even short distances.  Her symptoms are exacerbated by extreme heat or cold and Boston has always had its fair share of heat waves and cold spells.  MS is treatable, but the current treatments are far from a cure and can sometimes cause debilitating complications.  For Caroline, her fear of needles has played a part in her own treatment decisions, as some MS treatments require daily injections, which is far from an ideal treatment.

Caroline has decided not to let her MS diagnosis run her life.  When she was first diagnosed, Caroline was naturally scared and, in doing some research, found that there weren’t many places to turn for support.  Caroline has sought to change that and has become very active in the MS community, leading a team each year in the National Multiple Sclerosis Society’s (NMSS) Walk MS, and starting her own online blog and support group.  She has been published in two books and has appeared on her local news station to tell her story and help raise awareness.  Although Caroline did not author this quote, she tries to keep it in mind as she navigates her daily life:  “I may have MS, but MS doesn’t have me!”  Caroline’s will to stand up to her diagnosis has been an inspiration to many, including me.

Two years ago, I learned about Bike MS, a bike ride and fundraiser that raises money for the NMSS, which funds research into the prevention, treatment, and cure of MS, as well advocacy and outreach programs for those affected by MS.  I was very excited to participate in the Bike MS event for the first time in 2013 to support my good friend Caroline.  Slowly but surely, I rode 114 miles over two days, all the while being cheered on by NMSS staff and volunteers.  I quickly grew to love the warmth of the NMSS community and decided to begin volunteering at NMSS’s main fundraising event, Walk MS.  2015 marked my second year volunteering at Walk MS and will be my third year participating as a rider at Bike MS in July.

This year’s Walk MS event in Portland was held in April and I was excited to see two separate groups of friends participating in the walk.  But then it hit me…  these friends aren’t walking for Caroline.

Kyle and Jillian are walking for their friend Becky, who was diagnosed three years ago.  A few weeks later, Becky’s mom supported her daughter by participating in her local Walk MS, raising $800 on little notice, after Becky had missed Portland’s own Walk MS, which had occurred just days before her diagnosis.  Becky’s mom proved to be an inspiration for Becky, to take control of her diagnosis and join in the fight to change the future of MS.  The following year, Becky started her Walk MS team, unComfortably Numb.  2015 marked unComfortably Numb’s third year participating in Walk MS, which raised over $10,000 this year for MS research and support services.

Jose and Stephanie are walking for Felicia, Jose’s co-worker and friend.  Felicia is a wife and new mother who was recently diagnosed with MS at the age of 28, after experiencing symptoms of vertigo, extensive numbness, and difficulty walking.  As part of her treatment, Felicia has participated in physical therapy and occupational therapy to regain her strength.  She also swears by the use of essential oils to help manage day-to-day pain and muscle spasms.  She is grateful for these treatments, as they have helped her to be able to play and dance with her sixteen-month-old daughter, Abbagail.  Felicia participated in Walk MS this year, leading Team Felicia:  Orange is the new Pink! (orange is the official color that supports a world free of MS), because she is hopeful that we will see a cure for MS in her lifetime.  Felicia has three other relatives who live with MS as well, her grandmother, aunt, and cousin.  Let’s hope that by the time young Abbagail is a young adult, her generation will be free from the MS diagnosis.

And while it was great to see my friends supporting a great cause, I would much rather have seen them under different circumstances.  Kyle, Jillian, Becky, Jose, Stephanie, and Felicia walked, and I will ride, so that we can raise awareness and stop MS in its tracks, so that future generations will no longer hear the words “You have MS.”

This is why I ride Bike MS.  Please join me in supporting the NMSS as we work to create a world free of MS.  Any donation—large or small—will help in the fight against MS!  I greatly appreciate your support!

Please visit http://main.nationalmssociety.org/goto/carolinesbikems to donate.