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!

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!

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!

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!

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.

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....

 

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