Sunday, June 16, 2019

Exhausted! MS Fatigue: Here to Stay

I'm back! It's been 8 months (!) since my last post.
I haven't written anything for quite sometime because of my MS fatigue.  It seems stronger than ever.  I had a MRI at the end of last month and it came back showing I am stable. While I am incredibly thankful for that result, I feel almost disappointed or confused, because it doesn't match up with how I am feeling. I am still working full time and the days seem long and tiring. Luckily, in the last few months I have started going in to work a half hour later. It does help getting that extra half hour of sleep, but by the time 5:30pm rolls around - I am exhausted. Around 2 to 3pm is when I really start to feel the fatigue. Unfortunately, the anti-fatigue medications haven't helped.

My doctor gave me Trazodone to help me get to sleep. One pill seemed too strong so I started taking half a pill, and along with Lorazepam, it seemed to help. I also am taking Oxybutinin, which does help, but strangely if I take it every night it doesn't seem to work. So I take it about 2 to 3 times a week during the weekdays. 

What I find really helps is espresso!! I buy premade iced espresso and that helps me get through the morning. My MS specialist told me to try to not have caffiene after 2pm so maybe this is why I get tired around that time?

Who knows! Most days I am too tired to do much of anything, let alone blog. Since my last post, both my parents were in the hospital and I have been helping them a lot. (Who would have thought the gal with MS would become a caretaker?!) But I still have a passion for writing and raising MS awareness.... so I am still here!!

Bean's Blog slowly rocks on!

Sunday, October 14, 2018

Bean's Blog: A Year Later

It sure has been a long time since my last post. Over a year! I have wanted to write a new post many times, but fatigue gets in the way. (I am sure those of you with MS understand: fatigue is the most common symptom among those with MS) Working full time in a somewhat stressful environment takes it's toll on my MS for sure. But, here I am! What's a year, right?!

Even though I have had fatigue among other symptoms, I still am trying to raise MS awareness. Last October I modeled in Fashion Plates, a fashion show brunch hosted by the NMSS, which was so much fun! And, this past April, Team Kaliope participated in Walk MS for the 11th year. Thanks to friends and family I raised over $4600 for the NMSS!

I have been on Rituxan for about 2 years now, which is an infusion once every 6 months. So far it has been working well, according to last years MRI. It took some getting use to as after the first few infusions I had side effects and was not sure if I would continue on it. But, I think my body has gotten use to it, and hopefully there won't be anymore reactions to future treatments.


Other than MS and working, I have been enjoying time with friends and family, especially my niece, Melanie, who is now 4 1/2. I don't know where the time goes... but it sure is flying! Walk MS was extra special this year as Melanie joined Team Kaliope for the first time. She didn't quite seem to understand what was happening, and why we all were just walking down Commonwealth Avenue in Boston, but seemed to enjoy herself.  The weather again was too cold, but we made the most of it!

Ok, well, this is about all I write for now, as my arms are feeling weak.  I will try to continue posting, even if the posts are short!


Saturday, August 19, 2017

Never Stop... Never Quit...® - Bike MS with Caroline B

Maria & Caroline
Ready to start!
Day 1, Rest Stop 2
Jefferson Public Library
August 5th and 6th Caroline Blackledge, my friend for over 20 years, participated in Bike MS as part of Team Amulet in Willamette Valley, Oregon.

Caroline kept me updated on her progress as soon as she arrived to the grounds.  "I arrived at Bike MS Rider Village about two hours ago and am getting my dorm room set for the weekend. My sister Maria is joining me this year and I couldn't be more excited! We're sharing a dorm room, which will bring us back to our childhood."

I was so glad that Caroline had her sister with her to help make Bike MS even more for a special weekend. I hope they had a fun time together and enjoyed sharing a dorm room.

Day 1, Rest Stop 1 Mile 13
 Ankeny Wildlife Refuge
Being in the northwest the weather was a bit of a concern for the event. Caroline told me: "It will be in the low 90s this weekend (which beats the mid 100s from the past few days), but the air is also smoky due to wild fires up north."  This is not ideal for a biking event, or any event really. Caroline told me that the event leaders would keep watch of the conditions and make decisions as they saw fit.        

Day 1, Rest Stop 7
Burns Vista Ferry
Caroline & her students
Caroline was very excited to have a special group volunteering for Bike MS.

"This year I brought six of my AVID (college readiness) students. They will be volunteering at one of the rest stops and I'm so excited they're here! It's great to see them in this fun outside-of-school environment."  How wonderful that these students volunteered for such an event, and hopefully they will help raise MS awareness by telling their friends and family about their experience!
First day done! 91 miles!
Caroline biked 91 miles in the first day, which to me, is such an accomplishment! She was disappointed that she wasn't able to hit 100 miles, but the air conditions were not good and the bikers could not continue.  The second day Caroline rode alongside her sister Maria and they biked 19 miles! I can imagine how nice it was for them to be together for the second day and to encourage each other! 

Team Amulet's motto is "Never Stop... Never Quit..."® How appropriate for all of us with MS and all the riders! I am proud to  say that Caroline raised over $800.00!  And beyond amazing, Team Amulet raised $71,078.00!  Seems like their motto is working! Together, across the country, we can end MS!

Caroline & Maria
Around 10 miles in at the only rest stop
Day 2 - Maria & Caroline
Ready to Go!

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.

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 soominds66@gmail.com

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: http://www.themodifieddolls.org

Tuesday, February 17, 2015

iConquerMS

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!







Sunday, September 21, 2014

The Accelerated Cure Project for MS "All Star Event" at Fenway Park




The Accelerated Cure Project for MS hosted an All Star Event at Fenway Park's EMC Club in Boston on September 18, 2014. ACP is a non-profit organization dedicated to research efforts to improve diagnosis, to optimize treatment and to cure multiple sclerosis. It was a wonderful event that Abe and I were fortunate to attend. The evening started with mingling and some delicious appetizers. At this time we were also able to view items for a silent auction. There were many wonderful prizes, including 2 VIP tickets to see a taping of The Daily Show with Jon Stewart, 2 round trip American Airline tickets and numerous other prizes, which you can see some of below.

 
Around 6:30pm, we were invited to take a tour of Fenway Park. Growing up in Boston and knowing all the history that has happened there, it was an exciting and once in a lifetime opportunity . Even for Abe, who isn't a sports fan! We got to see the original Fenway doors, the Visitor's Clubhouse and we were taken to the Green Monster. We had a beautiful view on the park and were able to take some great pictures.
 


When we returned to the EMC Club, a buffet dinner was being served. The program started with a greeting from Chris Lambert, a local meteorologist on WHDH channel 7.  His mother has MS and he has supported ACP for quite some time. His parents were also there. We then were entertained by a song by Jennifer Paul Antebi, who changed lyrics to a popular song to reflect symptoms and feelings of MSers.


There were a few speakers, one of which was Miss Kentucky, Ramsey Carpenter, who was diagnosed with MS in 2010. Before the event started, I was able to speak with Ramsey. She is a lovely woman who carries herself with poise and confidence. (Not to mention gorgeous!) She is very kind, and was interested in my MS journey. I told her how thrilled I was that she has been able to raise awareness for MS, and how that has become a passion of mine. During her speech, she told us all of her own journey with MS and how not being able to play her fiddle led her to her diagnosis. After starting a disease modifying drug, physical therapy and having a positive attitude, not only was she able to play her fiddle again, but she was able to compete in the Miss America competition.



My Facebook friend and fellow contributor to "We Write for the Fight" Laura Kolaczkowski received the Director's Award. She traveled to Boston with her husband, John, from Ohio to attend the event. It was wonderful to meet her after corresponding with her for a few years. Laura blogs at Inside My Story and often contributes to MultipleScelerois.net.



The President's Award was given to Tony Interieri and Scott Spielman, the founders of Rally North America. From ACP's website about Rally North America:"Two Thousand miles driving US Route 50 through the states of Virginia, West Virginia, Ohio, Indiana, Missouri, Kansas, and Colorado surrounded by over eighty sports cars, muscle cars, and other unique rides while searching for secret check points at incredible places.  Each rally organized by Rally North America carries a common idea, driving for a cause. RNA believes that by combining the love of the automotive lifestyle and a worthy charity, it is possible to do something good through the automotive hobby."
So far they have raised over $109,000 for ACP!

There were "Shining Stars" given awards for their work with raising funds for ACP including Marion Leeds Carroll, Made Chambers, Patrick Curley, Judy and Nancy Medeiros, Shannon Miles and Libby Nichols.
 


After the program was over, we all enjoyed an ice cream sundae bar. The ice cream was being served in mini Red Sox hats. (How cute is that?!)  Over all the night seemed truly successful and I am so glad I was able to attend. It really was a pleasure to meet Laura after all this time, and I enjoyed speaking with Miss Kentucky. It's a night I won't soon forget!   

To learn more about Accelerated Cure Project for MS go to: http://www.acceleratedcure.org
 


Thursday, August 7, 2014

Caroline B's Bike MS Journey 2014 - A Guest Blog by Caroline Blackledge

On Friday afternoon, my Bike MS teammate Deb and I left the Portland, Oregon area a little earlier than we had last year.  I wanted to arrive in Monmouth in the early evening so that we'd have more time to settle in and get plenty of rest before Saturday's long ride.  While driving through Salem, however, the radiator in Deb's truck started pouring coolant onto the street.  We pulled over and had a impromptu tailgate "party" for an hour and a half as we waited for the tow truck to arrive.  Fortunately, my sister lives in Salem and was kind enough to drive us from the repair shop (closed for the weekend) to Monmouth (about 20 miles).  We arrived about four hours after we had intended and after the Bike MS check-in had officially closed.  However, we were still warmly welcomed by the Bike MS staff and were able to check-in for the bike ride and into our dorm rooms at Western Oregon University.  By the time we got to bed, it was nearing 11:00pm.  (So much for getting settled in early.  Next year, I think we'll take my car.)

The next morning on Saturday, Deb and I got up early and, over breakfast, discussed which route to tackle for Day 1.  The options included 33, 64, 84, and 100-mile routes.  Last year at Bike MS, we rode the 64-mile route.  And a few months ago, just prior to this year's Bike MS, we had ridden our first and only 100-mile century ride (for Reach the Beach, a fundraiser for the American Lung Association), an experience we were both glad to have done, but not one we were looking forward to relive any time soon.  Deb, having been out of town the week prior to Bike MS and not able to train much, suggested we take on the 64 or 84-mile route.  I, on the other hand, was feeling a bit optimistic, thinking that I'd play it by ear, but if I was feeling up to it, I wanted to attempt the 100-mile route (despite my vow not to after the Reach the Beach century ride).  So, we decided not to decide ahead of time, to set out on the course, and see how we felt when decision time came (about 35 miles into the day's ride).

As we cruised through the first ten miles, we ran into The Deer Lady (whom we now know to be Ashley).  At last year's Bike MS event, Ashley was riding the 100-mile route, when she was struck by a deer near the halfway point.  While she was not critically injured, she was quite banged up and was in no shape to continue her ride that day.  Deb and I had since referred to her as The Deer Lady, but this year we got to know her a bit better (including her name).  For this year's Bike MS, Ashley was setting out on the 100-mile route that had most unfortunately eluded her last year.

At the scenic Piluso Winery rest stop, it was decision time about which route to take.  I told Deb that I was feeling good and was going to try the 100-mile route, knowing that in a worst case scenario, Bike MS has plenty of support vehicles to rescue tired and injured riders.  Even though teammates do not have to ride the same routes as one another, Deb somewhat reluctantly decided to join me (after being sure to remind me that, only months before, I had sworn that I had no interest in ever participating in a century ride again).  So, we continued on our 100-mile venture, with 65 more miles to go.
At 40 miles into our ride, the route started up a long hill (gaining about 1500 ft in elevation over a 10-mile period, followed by a series of rolling hills).  This challenge took a big toll on my knee; a few miles after the hills turned flat, I began having shooting pain in my left knee.  At the next rest stop, I was able to ice my knee and take some ibuprofen, which helped to reduce the pain.  Just over halfway into the ride, I wasn't sure if my knee would hold out to the finish, but I decided to just keep riding along, knowing that I could call the Bike MS support van if I really needed to.
At the following lunch rest stop, my knee was still hanging in there and I struck up a conversation with Cliff, the videographer for the Oregon Bike MS event.  For some reason, my situation, including my injured knee and me being slowest rider on the route, intrigued Cliff and he asked if he could film me, to which I agreed.  So, during the next leg of the ride, the videography car, with Cliff laying in the back, poking his camera through the open hatchback door, followed me for about a quarter of a mile.  (I have to say that I did pick up my pace during that quarter-mile of filming so that there wouldn't be video evidence of me moving quite so slow.)
 
Also at the lunch rest stop, I had spoken quite a bit with Maria, one of the ride marshals (whose job it is to ride the route, hanging back to help out the slower riders and to make sure that no one is left behind).  She gave me some great advice that I will continue to use:  If you are injured or dehydrated, you need to stop riding and let yourself heal.  But if you are just feeling tired and want to be done riding already, keep plugging along and you'll get to the finish.  Maria rode with me much of the last 30 miles of the route.  As Maria had eluded, for me, it was more of a mental fight than a physical one. I took the remainder of the ride one segment at a time, just riding from one rest stop to the next.  Near the end of the route, my teammate Deb (who'd been ahead of me much of the ride) and I finally met up by coincidence and crossed the finish line in Monmouth at the same time.  Despite having little desire to complete a second 100-mile bike ride, we were successful in doing so!

Including our time spent at rest stops, Deb and I spent 12 hours completing the 100-mile course.  So, by the time we arrived at the finish line, being the last of the riders, the program at Rider Village was coming to a close.  We rushed to get some dinner, but, unfortunately, missed the speakers that were scheduled to talk at the event.  We were too exhausted to discuss the next day's ride, so we pushed it off until morning.

At breakfast on Sunday, Deb and I again debated which route (35 or 50 miles) we should take for the day.  Last year, we had opted for the 50-mile route, which did not disappoint.  The extra 15-mile stretch included a gorgeous tree-lined landscape (and also a very steep hill).  Again, we decided to play it by ear.  But my thinking was that since I had already completed the longest Day 1 route, I might as well also ride the longest Day 2 route so that I will have completed the longest combined route (and not have to attempt it again in future years).  Before we left for the day, I had the medics wrap my still-aching knee and I popped some (over-the-counter) pain killers (which, together, worked like a charm), and we were off on Day 2.

After the difficult ride on Day 1, our bodies were sore and the second day's ride naturally started as a bit of a challenge.  But after 14 miles, when we reached the second rest stop (greeted by enthusiastic volunteers dressed as superheroes) it was decision time.  Even though I was tired, I took Maria's advice from the previous day and so I opted to go for the 50-mile route.  Again, Deb reluctantly agreed.  After continuing on our ride for another five miles, however, the heat and Deb's stomach started to catch up with her.  She decided that she would ride through the beautiful scenery, and even up the hill, but that she would call it quits after that and ask for a ride from the Bike MS support van.
 
Knowing that the upcoming hill (steeper, but shorter than yesterday's hill) would be a challenge, I took a few short water breaks and one final picture of my favorite scenery from the ride.  Then I ventured up the hill, slowly plugging along, until I finally reached the top at the beautiful McDonald-Dunn Forest.  I waited at the top for Deb, but was told by some of the Bike MS support staff that she had decided not to venture up the hill after all.  So, Deb cooled down in the air-conditioned support van, and I continued on.  The next part of the route was a severe downhill with frequent curves.  Last year, this part of the ride made me quite nervous; it's difficult to stay near the side of the road while going so fast downhill and also being visible to cars from around the curves.  This year, since there were multiple support staff at the top of the hill, I asked one of them to follow me down the hill; cars would be able to see him, even if they weren't able to see me.
 
By the time I made it down the hill, I was bringing up the rear of the riders again.  So, I was soon joined by Gary, another ride marshal.  As we rode, Gary and I passed the time talking about different bike rides that we had completed and about bike accessories that can make bike rides more comfortable.  (Thanks to Gary, I am planning to buy a new bike seat and new cycling shoes very soon!)  At the last rest stop, I was surprised to find that Gary and I were not alone in bringing up the rear of the cyclists.  Cliff (the videographer) was also there, this time as a rider.  We rode the last ten miles and, after 6 hours of riding on Day 2, I actually managed to not arrive very last at the finish line this time.

I am glad that I was able to ride 150 miles for Bike MS, despite bringing up the rear on both days.  (And I'm excited to see if the video footage of me will make the cut.)  But more than that, I am very thankful for the awesome Oregon Bike MS staff and volunteers who put together this (my favorite) cycling event every year and took care of Deb and I so well!  And I'd like to give a special shout out to the rest stop volunteers, who enthusiastically cheer riders into the stop, always putting a smile on my tired face; to the route support staff, who offered a plan B in case I ran into trouble; and to the ride marshals, who gave me the extra support I needed to finish both days' rides.
 
So far, the Oregon Bike MS event has raised over $400,000 this year to help people with MS (but we are still short of the goal, so please consider donating up until the September deadline)!  Please join me next year for Bike MS (whether you're in Oregon or another state).  You won't regret it!!!