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

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:

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!!!

Monday, July 28, 2014

Bike MS 2014

My long time friend, Caroline Blackledge, is participating in Willamette Valley's (outside of Portland, Oregon) Bike MS this weekend!
This will be Caroline's 2nd year leading team Kaliope Oregon, in honor of me and my local team, Team Kaliope. Caroline making this kind of commitment to help end MS is just amazing! Since MS limits my ability to exercise (and ok, I am lazy too!), thinking about biking for over 100 miles over 2 days just blows my mind! Especially since I don't even know how to ride a bike!

If you are able to donate to Caroline's efforts to ending MS, please donate any amount. You can view Caroline's personal, secure webpage here. Every dollar counts! Sharing this blog and Caroline's webpage would also be a great help... not only to raise funds, but also to help raise awareness!

As I mentioned, this is not Caroline's first time participating in Bike MS. I was lucky enough to have Caroline guest blog for me last year about her experience. You can read about Caroline's Bike MS Journey here. And, if you would like to read more about how Caroline and I "met" (you'll see why I put this in quotes once you know our story!) you can read all about it in my previous blog Inspiring Others to Raise Awareness.
Every year I participate in Walk MS, and I know what a special experience that is. I can only imagine how amazing Bike MS is, as well. I wish I could be there to cheer Caroline on, and maybe someday I will. But for now, I will be riding with her in spirit!

Saturday, July 5, 2014

MS Madness! A "Giggle More, Cry Less" Story of Multiple Sclerosis Book Review

 MS Madness!  A "Giggle More, Cry Less" Story of Multiple Sclerosis by Yvonne deSousa is exactly what it promises. Lots of laughs! Whether you have MS or not, this book is extremely enjoyable and explains the crazy, bizarre symptoms that can happen with MS and makes you laugh all the way. 

Yvonne was diagnosed in 2009 with Relapse Remitting MS and since then has made it her mission to laugh at MS and make others laugh along with her. She has had me laughing long before her book came out, as she blogs at about her journey with MS.
This book is definitely one I would recommended. Before being diagnosed we all have had symptoms we ignored, and then there were the ones we had that we could not ignore that led us to our diagnosis. 
In the book Yvonne talks about working full time as a receptionist in a medical office. As time went on, and changes were made within the office and Yvonne's symptoms increased, she realized she could not continue working. I am sure it was a difficult decision as she had worked there for many years, but it seems it was the right choice. Stress can intensify symptoms, and it certainly did for Yvonne.
Like all of us, we need to figure out what works for us post MS diagnosis, and figure out what adjustments we need to make to our lives. One of the most common symptoms, which Yvonne and I share, is fatigue. Yvonne talks about her learning experience and what changes she had to make with the many symptoms she was experiencing. Yvonne has many funny stories about her "brain fog" or "cog fog" and an amusing tale about buying a much more expensive computer than planned while on "legal speed." An incident that I can relate to is when Yvonne had a friend visit. It was a tradition for them to go the same restaurant.  Being the summer on Cape Cod, the restaurant was very busy and Yvonne started to get a headache from the loud and crowded restaurant. I have come to realize places I also need to avoid and when I can and can't participate in outings with friends.

I am lucky to call Yvonne my friend, and we once met. (Yes, only once even though we live in the same state!) Once a month I go to a local support group and quite a few years ago one of the leaders asked if she could give Yvonne my email address as she knew we both had a passion for writing and raising MS awareness.  Our friendship bloomed from there.  I am sure we will someday meet again! But, the mean time we encourage and support each other through emails and Facebook. Yvonne has been an inspiration to me and I am sure after reading her book, she will become one to you too! And you will be thankful to be able to laugh at MS too!
P.S. If you would like to buy Yvonne's book here are a few links where to buy it and you can feel good about this purchase as a portion of the proceeds of each book goes to agencies helping people with chronic illness.

Abe Books

Sunday, June 22, 2014

"When I Walk"

 "When I Walk" by Jason DaSilva is a film I first saw last summer at the Museum of Fine Arts in Boston with Abe. It premiered at the 2013 Sundance film festival and later that year had its theatrical release. It now will be aired on PBS tomorrow, Monday, June 23rd.
Jason DaSilva is a film maker and after being diagnosed with primary-progressive MS, he decided to document his journey.  Jason was 25 years old when he received his diagnosis and like all of us MSers had our lives turned upside down.  Jason has a lot of challenges and his condition gets worse as he goes from walking, to needing a cane, a wheelchair and now a scooter.  Along the way, Jason meets Alice and they fall in love and get married in 2010. They now have a son, Jase. Alice becomes Jason's caretaker as well, and at times that is difficult. Not only does she help him with everyday tasks, but she also helps him with this film. (And now being a mother and Jason's caretaker.. I don't know how she does it! Kudos to Alice!!) Check out the website at
During Jason's filmmaking, he came up with a great idea for an app called AXS Map (pronounced access map) where everyday people can post places from restaurants to stores that are truly handicap accessible. Getting around on public transportation is extremely difficult if you are not able to walk, which you will truly understand once you see this film. Often when people with walking aids like a wheelchair finally get to their destination they find there are few steps, and therefore not handicap accessible. How frustrating after a maybe 2-3 hour commute that would take a mobile person 30 minutes!! AXS Map will help those who still want to go out find places that they are accessible. Find out more about this incredible project at
In the last Momentum MS Magazine, Jason DaSilva was featured. Read his story here and more about the film.
The film premiers on television tomorrow, Monday, June 23rd.
Locally, it airs at 10pm, but here is the link to find out exactly what time it will be aired in your area.
This is a powerful film and I urge you to watch. Share with your friends and family so they can watch too and learn more about what it really means to have MS. Jason has spread MS Awareness and continues to do so. He has really become an activist for all of us MSers and I could not be prouder!
Now let the rest of us help spread MS Awareness too!



Saturday, June 7, 2014

Bean's Spring Update

It's been a while since I've made a post. I haven't been feeling the best as I have been getting a lot of headaches and fatigue. While working a full time job, these aren't the easiest symptoms to deal with. I have a hard time falling asleep and started a new medication to help me sleep through the night. The periodontal office where I work has been going through renovations and keeping the office open during the renovations has been challenging at times. Also, I have been having asthma issues (my inhalers are no longer working) and I am scheduled for testing next week to try to figure out what's going on with me. (Look forward to the next post to find out!)

The past few months have also been busy as I am spending time with my sister and my new niece, Melanie. Melanie was born premature on February 7th (my anniversary with Abe!) but now is growing fast and becoming stronger and stronger every day! I visit my sister, her husband and Melanie on the weekends and help out any way I can. I have been enjoying seeing Melanie grow and her developments. She now smiles and I look forward to hear her giggle!

In April I participated in Boston's Walk MS for the 6th year. Walk MS is such a fantastic event and I am proud to say I raised $3,673 and in total Team Kaliope raised $4,353!  It always is amazing to see the amount of people who come together to find a cure for MS. The Boston walk was in a new location this year, and we walked 3.5 miles down Commonwealth Avenue by Boston University and looped around the Charles River for a bit before walking back up Commonwealth Avenue to the BU Indoor Track and Tennis Center. This year Team Kaliope was a little smaller, as I mentioned in my  that my sister had a baby so she and her family were not able to walk with us this year. I am now looking forward to next year's walk more than ever knowing my adorable little niece will be with us!

In May I had another JC virus test since I am on Tysabri, a monthly infusion, for my MS. I am thrilled that it came back negative! It is such a relief because Tysabri has been working so well for me, and if the test came back positive I am not sure I would continue on it. In comparison to other MSers, I know I have it pretty good. I thank Tysabri for that. July10, 2008 was my first Tysabri infusion, and am thankful I have been on this medication for almost 6 years! Next month will also be my 8th MS anniversary.

Regardless what is going on with MS, I just take one look at Melanie and all my problems just fall away! She has become one of the most important people in my life and my MS will not stop me from being the auntie she can count on!

Friday, March 28, 2014

Walk MS 2014

On Sunday, April 6th I will be participating in Boston's Walk MS for the 6th year leading Team Kaliope. This year the walk is 3.5 miles and in a new location, the Boston University campus. I am very excited to see the new route for the walk! The first year I participated in Walk MS in 2009, I didn't know what to expect. When I entered the Harvard Stadium I was overwhelmed by the sight of thousands of people. We were all there for the same reason and I was overcome with emotion. Each year the sight of so many people still effects me, and I am so proud to  be a part of such a special day!
Every year Abe and my sister, Annie have walked by my side to help encourage me. This year my sister will not be able to walk with Team Kaliope as she had a baby last month. Melanie was born pre-mature on February 7, 2014 at 3.2 pounds. I will miss having Annie by my side, but find this year is more important than ever to walk and fundraise as I never want Melanie or anyone else hear that there is no cure for MS!
In order to end MS we need to do it together! If you are able to help me achieve my fundraising goals, please go here to get to my secure personal page to make a donation of any amount. Every dollar counts!

This year I am hoping for nice, warm weather as Boston desperately would like spring to arrive. I have met many people along my journey and it is always so nice to see so many familiar faces at the walk and to have a friend walk with me. I always document the event with many photos to help remember the great time. I will be sure to blog about the event and share some of those photos with you!

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


Monday, February 10, 2014

MS Warrior: An Interview with Lori Grande

Lori Grande hosted the Fashion Plates event I attended in November 2013. She is a strong and funny woman and I wanted to learn more about her. Lori Grande is the co-host of the Boston morning show "JW and Lori in the Morning" on Country 102.5FM. I reached out to her and she was so receptive to the idea of an interview.
1. When were you diagnosed with MS?
I was diagnosed with MS 6 years ago. I had visited a friend of mine in London. When I came back I noticed my feet were very cold and tingly like they were asleep. I soaked them in hot water, rubbed them, and put on extra socks. Nothing worked.. so I went to the doctors and she was smart enough to send me to a neurologist. Then the many, many tests began. After I was diagnosed I remembered periods of weakness in my legs and times I was unable to walk for a few minutes. All those things started making sense.

2. What was your initial reaction to your diagnosis?
My initial reaction was total fear. I just thought, "I don't want this!" I wanted it not to be true. I spent the weekend alone on the computer reading stories about people in wheelchairs and using canes. I thought well I will be in a wheelchair next year. I had no conception of what the diagnosis actually meant. Now, I wish I could pass along to other women and men that you can live a happy, healthy, productive life WITH MS.
3. How did your diagnosis effect your job, if any?
I have been very lucky to have had long periods of time without any problems. I did not tell anyone at work. I was scared to death.. afraid I would lose my job. In fact when I had told my boss that I would be hosting the Fashion Plates Luncheon and that all the models had MS, he "Can any of them walk?" So, with that kind of response, I knew I wouldn't be telling him anytime soon. But, now that I have several healthy years under my belt, I had no problem telling him recently. He was wonderful about it. And I know I educated him. After one MRI, a couple years ago, the doctor found some new lesions. So I had to go in for steroid infusions for a couple days. Well, I worked the morning show, went for the infusions and then hosted a Country night at a restaurant. So luckily it all has gone very smoothly.
4. What is something positive MS has brought to your life?
I have met some of the most wonderful people in the world. People I most likely would not have met otherwise. At one point a few years ago, I was at a brunch at Piper McNeely's house talking with several lovely women...and I thought Wow, I am exactly where I belong. It made me feel so good.

5. How do you manage your MS?
Now that I understand MS... I try not to get overtired or overheated. For instance, I won't go for a walk in the middle of the day in the high heat. I also take vitamin D every day. I make sure I never miss a doctor's appointment or MRI. I inject Copaxone once a day.
6. How did you get involved with Fashion Plates?
It was serendipitous!!! Anthony Edwards had a conflict and was unable to do it so someone asked Candy O'Terry from Magic [106.7 FM]. She couldn't do it and asked ME! No one knew I had MS.. I thought.. How perfect that I would be involved with this particular luncheon. And of course the women are so wonderful, kind, and inspirational. And I was able to see all these beautiful ladies who were living healthy lives with "my" disease.
7. Are you involved with any other MS fundraisers?
I was lucky enough to do the MS ride on Martha's Vineyard a couple years ago. I trained for it by increasing the length of my rides leading up to it. When I finished.. I must say.. it was the best moment of my life. Better than the day I got married.. Better than the day I got divorced. I never would have thought I could do that. And here I was doing it WITH MS. I will never forget that day.. and hope to do the ride again. I also have hosted the Climb to the Top at the Hancock tower for the past couple years. Another inspirational day.. especially seeing firefighters in full gear making the climb. Just this past winter I took part in an event to raise money for the MS Society at a store in the Natick Mall called Vineyard Vines. We had a band and a bar.. and the store donated a portion of the money people spent on clothes that day.
8. Do you ever talk about your MS on your morning show?
I have not talked about it on the air. But I have mentioned the luncheon and the inspirational women that take part in it. My partner JW knows I have it. I have not "come out" yet on the air. I don't want to make my work with the MS society all about me. But I very interested in doing more with them and hopefully educating people about MS. The message I would like to get across to people recently diagnosed is that you don't need to be so fearful. You can live a happy healthy life. There are so many fantastic medications available to people now. And that is because of all the amazing work that people have done at the MS society.


Saturday, January 11, 2014

Winter Asthma Blues

It's definitely the middle of winter here in Boston. The weather has been extremely cold (sad to say the mid-west has had it even worse) and  we have had a few snow storms. Really, there is a few more months of winter left, and I am not looking forward to it.

 In addition to MS, I also have asthma, which usually doesn't bother me at all. I was diagnosed with asthma when I was around 12. Last week, out of nowhere, I could hardly breathe. Something similar had happened last winter and I went on steroids.  It was Monday night and I was very worried and considered going to the ER, but really didn't want to. From last winter I had a few prednisone pills left and decided to take one as they had not yet expired. I didn't know if I should or shouldn't but decided that I was going to! (You shouldn't really do this, and I don't advise anyone does take leftover pills without a doctor's permission). But, I think it was the right thing to do, and was 90% sure when I went to the doctor, this is what I would be prescribed.
And I was right! I got an appointment with a doctor the next day and started on prednisone. For any of you that have been on steroids before, you know how unpleasant they are. The side effects are rough. I am very sleepy, but have trouble sleeping. It also makes me feel hungry all the time, but changes my taste buds, so I can't really taste the food well. I have now finished tapering off the prednisone, but still have the side effects as it is still in my system. I can't wait for it be out of me! I want to taste food and I want to be able to get some real sleep! It is very difficult going through all of these effects while working full time. I have been exhausted lately and haven't really wanted to do much of anything.
A concern about being on prednisone is that I am also on Tysabri, and there is contradiction to being on both medications. I contacted my neurologist and he said I would be fine to have my infusion next week. I was relieved because I don't want anything coming between me and my Tysabri! I think because the prednisone was such a low dose is why it is ok to keep the infusion, and because by the time my appointment rolls around, the steroids will be out of my system.
The problem though, is that I am still not feeling like I am breathing as normal and my heart rate is elevated. I thought by now the steroids would kick this "thing" out of my system. I am feeling better, that is for sure, but not 100%. I am going to wait until Monday and see how things are going and based on that contact my doctor. It may just be that one of my inhalers need to be changed... or something else all together!!  It seems like with MS, and now asthma, it's always something! Do any of you feel that way... you can't catch a break?! At least this weekend the weather is warming up and I am planning to try to enjoy every moment of that!