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

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 to donate.

Monday, May 25, 2015

Ready, Set, Write!

I am so excited to share that submissions are now being accepted for Something On Our Minds, Volume III (SOOM), an anthology of writing by people connected to Multiple Sclerosis and neurological disorders.

As you may know, I contributed to Volumes I and II and it was a huge accomplishment for me. I am now working on pieces to submit to Volume III and hope this will be the best volume yet!
I have always enjoyed writing and to be able to share it with others in this way has been amazing. I've Been Published! pretty much explains it all.

I encourage YOU to submit something as well.  The editors will accept for review original essays, fiction and poetry, and are looking for new voices to add to the previous work of Volume I and Volume II.

The editors are accepting material for consideration until June 30, 2015. Essays and fiction should not exceed 3,000 words, and shorter writings are encouraged. Multiple submissions of poetry is encouraged, up to three pieces per writer. Art/graphic ideas for the cover are also needed.

There is no cost to writers if your craft is included in SOOM, but everyone is asked to help actively promote the sale of the book through Amazon. This is a fundraising project coordinated by volunteers, and all profits will be donated directly to the Accelerated Cure Project.

For complete details and submission guidelines, email

I hope I will see your name in SOOM!

Thursday, March 19, 2015

Raising MS Awareness with The Modified Dolls

This month I am being featured on The Modified Dolls website for raising MS Awareness! March is MS Awareness month and portions of my Q&A with them is being posted all month on their Facebook page.

Here is an overview of The Modified Dolls. It is a 501(c)(3) charitable organization based in Illinois. They have chapters and are building chapters all over the world. The goal of The Modified Dolls and their chapters is to erase the negative stereotypes associated with modified women by doing charity work. They provide fundraising, volunteerism and awareness to preselected Charities of the Month as well as other organizations selected by individual chapters. They are the different making a difference!

TMD is an organization made up of warmhearted and beautifully modified women, are in the business of breaking down negative stereotypes against women who choose to express themselves through body art. In an effort to change the views of those who believe modified women hold lesser morals, members of our organization hold themselves to higher standards. In addition to having careers, caring for families, and/or getting an education, their members give their time to fundraise and volunteer for charities to help those in need and to make the statement that modified women are much more than their skin.

The Modified Dolls Central Organization is located in Illinois.  They facilitate and serve chapters all over the world and encourage members to build new chapters.  They are a membership organization run by ten Officers and Directors who work on a strictly volunteer basis
The Modified Dolls supports a different Charity each month. Each year they hand pick twelve Charities we believe serve communities, individuals, and animals in a way that is productive and meaningful.  They spread the word, encourage giving, hold fundraisers, and volunteer to make a difference for each organization. In addition, their individual chapters often select local Charities to support.

And this month it's the National MS Society! I am so thrilled to spread the word! My friend is a member and asked to me to participate, which I jumped at the chance!

Here is the Q&A I did earlier this month.

1. What is multiple sclerosis? How long have you been battling- when were you diagnosed?
Multiple Sclerosis is thought to be an autoimmune disease that affects the brain and spinal cord. There are few types of MS: Relapse-Remitting, Primary-Progressive and Secondary Progressive are most common. I was diagnosed with RRMS in July 2006 after experiencing numbness and tingling that started in my feet and quickly spread up to my torso and hands. I also experience the ironically named "MS Hug."

2. Who gets MS? Does age or race matter at all?
Anyone can get MS, however it most likely to be diagnosed between the ages of roughly 20-40. Women are more likely to be diagnosed than men. These days, people are getting diagnosed younger and younger and there are now many children who have been diagnosed with pediatric MS.

3. What are the typical symptoms of MS? And what are your personal symptoms?
Typical symptoms of MS are fatigue, numbness/tingling, vision problems, balance and walking problems, bladder control problems, sexual dysfunction and weakness. These are certainly not all of the symptoms that can be experienced, but this gives you an idea of the wide variety. Everyone with MS experiences their own group of symptoms that can change at any time. No two MSers have the same MS. For me, the symptoms I most struggle with are headaches/migraines, weakness, tingling, balance and fatigue, which can be the most challenging as I am working full time.

4. Does MS always cause paralysis?
Absolutely not! Years ago when someone would be diagnosed with MS, it wasn't uncommon that they were told that they would be wheelchair bound. Over the last decade or so there has been so much research that neurologists now know this is not the case. Of course, everyone's MS is different, but I think it is unlikely for most MSers, especially those who have been diagnosed with Relapsing -Remitting MS to be wheelchair bound for life.

5. What medications and treatments are available? What type of treatments do you experience personally?
When I was diagnosed there were only injectable medications to help slow the progression of the disease. There is no cure for MS. Now, there are many new medications offered, some of them are oral medications too. In the past 21 years, from 1993 to 2014, the world went from zero disease-modifying drugs for multiple sclerosis to twelve! Research is definitely going in the right direction! After being diagnosed I started on a once a week intramuscular injection. I was on this medication for a year and a half. It was quite challenging for me because I quickly learned I have a fear of needles, especially one that was 2 inches long! Though, I was quite surprised by this, because I have a few tattoos and have had shots before, but this was something totally different. I was unable to do the injection myself due to my anxiety, I was barely even able to look at the needle! Luckily, my husband was able to give the injections for the full time I was on it. Currently I am on a once a month infusion and have been on it heading for 7 years this summer. This was the right choice for me because I no longer had to worry about getting a shot, but more importantly, this medication has helped control my MS. I once read this quote and like to live by these words: "I may have MS, but MS does not have me!"

If you would like to learn more about The Modified Dolls, please check out their website:

Tuesday, February 17, 2015


A few weeks ago I heard about a new initiative called iConquerMS. As most of you know, I am interested in any way to raise MS awareness and to help further research. I first learned about the website through the Accelerated Cure Project (ACP) on Facebook. I was asked by the ACP if I would be interested in speaking with the Boston Globe about iConquerMS. At the time I didn't know much about the website, but jumped at the chance to bring awareness to MS and to be able to share my story. I quickly joined iConquerMS and learned about it for the interview which would take place about a week later.

iConquerMS is a website for and by people with MS where you can sign up and take surveys about your health and symptoms, ultimately to share your electronic medical records if you choose. The website has directions how to request them from your doctors. Researchers will be able to have access to this information and use it in their MS research. Your identity will be kept confidential. iConquerMS would like to get 20,000 people to sign up by September. Also, as a member you can suggest questions and topics to the researchers. I encourage everyone to check out the site and sign up. I think everyone's goal is to find a cure, which this can help with, but it can also help find more disease modifying drugs and other ways to slow the progression of MS. There are many possibilities!

I spoke over the phone with Boston Globe reporter, Robert Weisman about my experience with MS and the iConquerMS website. It was a great experience and the article came out February 4, 2015. You can read the article here.

I was honored that the ACP thought of me to speak about iConquerMS and I am proud to support it. Also, my friend, Laura Kolaczkowski is the lead patient advocate for it and whenever I hear her name involved, I know it is a worthy cause! I was fortunate to meet Laura last September when I attended a MS fund-raiser at Fenway Park which you can read about in my last blog post The Accelerated Cure Project for MS. Another great thing about iConquerMS is that many organizations have come together to support this website such as the National MS Society and Can Do MS just to name a few.
I can't believe September was my last blog post! I have been struggling with fatigue while I am working full time. So, Bean's Blog got tossed to the back burner. However, iConquerMS is worthy of me pushing myself a bit to share this great website with you.

Let's hope we can get 20,000 people to sign up and let's get this research started!