tag:blogger.com,1999:blog-2645820475659060412024-03-05T06:18:18.666-05:00Bean's MS BlogCaroline "Bean" Kyriakou's journey with Multiple SclerosisBean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.comBlogger42125tag:blogger.com,1999:blog-264582047565906041.post-28125239804312248422019-06-16T21:12:00.002-04:002020-11-10T21:49:12.737-05:00Exhausted! MS Fatigue: Here to Stay<div dir="ltr">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGXV81WMKbrBHF9vlNMNCXCkCXx7SVbxp1cBiexynoGvXKSD14HsDpgaZMUNsbjx54xwaa0YEraviv9a3Nl5LC4E8RXE84nyvcgxRKWUeiuhy_VvwAxbIIdHxDnJrQtuW2DFgNzEeT24Y/s1600/20190514_122400.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGXV81WMKbrBHF9vlNMNCXCkCXx7SVbxp1cBiexynoGvXKSD14HsDpgaZMUNsbjx54xwaa0YEraviv9a3Nl5LC4E8RXE84nyvcgxRKWUeiuhy_VvwAxbIIdHxDnJrQtuW2DFgNzEeT24Y/s200/20190514_122400.jpg" width="112"></a>I'm back! It's been 8 months (!) since my last post. </div>
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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.</div>
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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. </div>
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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?</div>
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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!! <br>
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Bean's Blog slowly rocks on! </div>
Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-47174498324997132362018-10-14T12:36:00.005-04:002018-10-14T12:36:57.420-04:00Bean's Blog: A Year LaterIt 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?!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnrorKd1e3T-ta9MVdb5HXg_IOzZX35PE0H0SXfQnhyphenhyphen0CusX4ESoM6Sh8jPWJ5veGVreL11cb-ypQaqFOPqqcd1oWkHOMJ7DTXrQxTAwKPPTwwk0SLYAI5XYhTdZ8k0fXJey_Jc5D8nu4/s1600/DSC01756.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnrorKd1e3T-ta9MVdb5HXg_IOzZX35PE0H0SXfQnhyphenhyphen0CusX4ESoM6Sh8jPWJ5veGVreL11cb-ypQaqFOPqqcd1oWkHOMJ7DTXrQxTAwKPPTwwk0SLYAI5XYhTdZ8k0fXJey_Jc5D8nu4/s200/DSC01756.JPG" width="200" /></a>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!<br />
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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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVUcF3ksNJpja3Y-9BrSY_PUSLnz4OXH0Dysqd9C-AEko5hT3Rg3vlhlIASKv1JuvdWWNamRUCQz8bfQ2edY2KeO65GFpgQaCmb-ItcE-nCLUTSyK3e6JgHm9OZFahNFBKWe8dhu1GDYo/s1600/DSC02324.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVUcF3ksNJpja3Y-9BrSY_PUSLnz4OXH0Dysqd9C-AEko5hT3Rg3vlhlIASKv1JuvdWWNamRUCQz8bfQ2edY2KeO65GFpgQaCmb-ItcE-nCLUTSyK3e6JgHm9OZFahNFBKWe8dhu1GDYo/s200/DSC02324.JPG" width="200" /></a><br />
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!<br />
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Ok, well, this is about all I write for now, as my arms are feeling weak.<em> </em>I will try to continue posting, even if the posts are short! <br />
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Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-1783284415502960192017-08-19T12:02:00.000-04:002017-08-20T10:22:53.714-04:00Never Stop... Never Quit...® - Bike MS with Caroline B<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Maria & Caroline<br>
Ready to start!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Day 1, Rest Stop 2<br>
Jefferson Public Library</td></tr>
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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.<br>
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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."<br>
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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. <br>
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<tr><td class="tr-caption" style="text-align: center;">Day 1, Rest Stop 1 Mile 13<br>
Ankeny Wildlife Refuge</td></tr>
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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. </div>
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<tr><td class="tr-caption" style="text-align: center;">Day 1, Rest Stop 7<br>
Burns Vista Ferry<br>
Caroline & her students</td></tr>
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Caroline was very excited to have a special group volunteering for Bike MS.</div>
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"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! </div>
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<tr><td class="tr-caption" style="text-align: center;">First day done! 91 miles!</td></tr>
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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! <br>
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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!<div><div>
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<tr><td class="tr-caption" style="text-align: center;">Caroline & Maria<br>
Around 10 miles in at the only rest stop</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Day 2 - Maria & Caroline<br>
Ready to Go!</td></tr>
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</div></div>Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com2tag:blogger.com,1999:blog-264582047565906041.post-34458269732086945942016-11-26T13:00:00.001-05:002016-11-26T13:00:55.827-05:00Fashion Plates 2016: A look backstage<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL4qB-WtZgAvXd7Wk8tSlO4EqBF1V8KAbLjsejoC5p2b9ZgpjEg0MDgDAuOrLmLvgwDNJYmMpYDusJI3JuxFL004rCv9fOg-nia8UQ-wAoRFyajieHknzyDlkxPzNxj4MJvB-iNECTY38/s1600/DSC00954.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL4qB-WtZgAvXd7Wk8tSlO4EqBF1V8KAbLjsejoC5p2b9ZgpjEg0MDgDAuOrLmLvgwDNJYmMpYDusJI3JuxFL004rCv9fOg-nia8UQ-wAoRFyajieHknzyDlkxPzNxj4MJvB-iNECTY38/s200/DSC00954.JPG" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBPXjcNFyMz1mFARLdvBZ0zFUiO-J44rbcT4T5ukCmhYKXtsz6DvUxhrY6j85w718bETkOkYBajLythgRJ-gRm4UOIyvMSptpN5a0t6S5WRPvKXOVWSx_Sixm9feLoobzxW9XSza5ze7w/s1600/DSC00947.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBPXjcNFyMz1mFARLdvBZ0zFUiO-J44rbcT4T5ukCmhYKXtsz6DvUxhrY6j85w718bETkOkYBajLythgRJ-gRm4UOIyvMSptpN5a0t6S5WRPvKXOVWSx_Sixm9feLoobzxW9XSza5ze7w/s200/DSC00947.JPG" width="200" /></a></div>
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A friend asked if I would volunteer to help backstage. I was happy to say yes, and am so glad I did. </div>
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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). </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZNXjVZ-ujgaGTqJsKu2KNPhiv2-QUH9K-hBLW5umPFFTEzyshBaIVQvA_0nqWyGheeLj00cSfclXBe9JO1yMlawfRoX0mqY1NQIv1Tuc-e6SI75JlOILA2iOxfGrBR1MHZTj28KSJBWw/s1600/DSC00976.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZNXjVZ-ujgaGTqJsKu2KNPhiv2-QUH9K-hBLW5umPFFTEzyshBaIVQvA_0nqWyGheeLj00cSfclXBe9JO1yMlawfRoX0mqY1NQIv1Tuc-e6SI75JlOILA2iOxfGrBR1MHZTj28KSJBWw/s200/DSC00976.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and Lori as she gets ready to walk the<br />
runway</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-H8TAcuxlsMDIpCqD52JhFq1t2mMKN0QKDGN0OaO-7IuyN6XdUfEtHdXjiC0PCOcGdFFv9QmdX6pZFjeGgb7wu_rmZlCGvEzCV-ucX9Q27Y4Xhu4N_Xu573b9WIZqZZaoSsalANA4pqE/s1600/DSC00971.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-H8TAcuxlsMDIpCqD52JhFq1t2mMKN0QKDGN0OaO-7IuyN6XdUfEtHdXjiC0PCOcGdFFv9QmdX6pZFjeGgb7wu_rmZlCGvEzCV-ucX9Q27Y4Xhu4N_Xu573b9WIZqZZaoSsalANA4pqE/s200/DSC00971.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and Lori before the show</td></tr>
</tbody></table>
<div style="text-align: center;">
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 <a href="http://carolinekyriakou.blogspot.com/2014/02/ms-warrior-interview-with-lori-grande.html" target="_blank">MS Warrior: An Interview with Lori Grande</a>. 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 </div>
<div style="text-align: center;">
and so easy to talk to, just as I thought she would be. We bonded over the love of our nieces!</div>
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<div style="text-align: center;">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrhT-pL4-dxSuK_d61zTGNiBuRIONoNyjkfivYFGrEcOApO0Ozx-xWIv5EFNBtfzv7nz6zFwXIXNSzagbYJwB6YB4KvDLvSGcV0ge39Qz382WC56iA65GZiA1_fOLb7lUseSvSh-Kfs0Y/s1600/DSC00949.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrhT-pL4-dxSuK_d61zTGNiBuRIONoNyjkfivYFGrEcOApO0Ozx-xWIv5EFNBtfzv7nz6zFwXIXNSzagbYJwB6YB4KvDLvSGcV0ge39Qz382WC56iA65GZiA1_fOLb7lUseSvSh-Kfs0Y/s200/DSC00949.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Those shoes!!!</td></tr>
</tbody></table>
</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT8lZ-hIYyDu-NLyJySr1X8w4Eethsc_X3zsqLEJGDJ3y-fz3i7qC5ynrNasuguEZO5COeq62CtM57ls1_7g5cKH0vWDxPOaDjIJSr3-AaChzCNl52XxmRhtcZa__GhnWyQ7ilCWKf0S8/s1600/20161104_141923.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT8lZ-hIYyDu-NLyJySr1X8w4Eethsc_X3zsqLEJGDJ3y-fz3i7qC5ynrNasuguEZO5COeq62CtM57ls1_7g5cKH0vWDxPOaDjIJSr3-AaChzCNl52XxmRhtcZa__GhnWyQ7ilCWKf0S8/s200/20161104_141923.jpg" width="112" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In the red lipstick<br />
by Danielle Keefe</td></tr>
</tbody></table>
<div style="text-align: center;">
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 <a href="http://www.daniellekeefeartistry.com/" target="_blank">Danielle Keefe Artistry</a>. She has many beautiful products and colors. I love supporting local businesses, especially when they support ending MS!</div>
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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!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIgm8PEJIHNg4np8RRt0J55VwMheoRSqkdeKxknIuuiFLhHBIwi2pB9EMdydppKHEqYO7a_brB-81gq1XCrbU6dAtL2vQK18nSlXaVs59ZM5FpKgHZN9H-cmtDAT2IxyH0pfipqDkv8Eo/s1600/DSC00977.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIgm8PEJIHNg4np8RRt0J55VwMheoRSqkdeKxknIuuiFLhHBIwi2pB9EMdydppKHEqYO7a_brB-81gq1XCrbU6dAtL2vQK18nSlXaVs59ZM5FpKgHZN9H-cmtDAT2IxyH0pfipqDkv8Eo/s320/DSC00977.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The beautiful models as they get ready for finale on stage: <br />
champagne toast!</td></tr>
</tbody></table>
Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-32435426136234835502016-07-31T12:10:00.000-04:002016-07-31T12:19:56.891-04:00Why Do You Bike MS?<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVVgXi07m7iCzPMtUvc5j6Mjrv8ucmTVrM9MvNHIQhAfOjkMapezyGc7gsMFYkMJjohYl4WxWGObnNifzxbHCCnWNMzA5atznpgEXM36jsdYN6bMQOS5hnBbr5cy0zSqfK2S4EFMg-qlU/s1600/blog-carolinebandk.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVVgXi07m7iCzPMtUvc5j6Mjrv8ucmTVrM9MvNHIQhAfOjkMapezyGc7gsMFYkMJjohYl4WxWGObnNifzxbHCCnWNMzA5atznpgEXM36jsdYN6bMQOS5hnBbr5cy0zSqfK2S4EFMg-qlU/s200/blog-carolinebandk.jpg" width="155" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Caroline B (left) and Me around 2003</td></tr>
</tbody></table>
<span style="font-family: "times" , "times new roman" , serif;">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.</span><br />
<span style="font-family: "times" , "times new roman" , serif;"> </span><br />
<span style="font-family: "times" , "times new roman" , serif;">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. </span><br />
<span style="font-family: "times" , "times new roman" , serif;"> </span><br />
<span style="font-family: "times" , "times new roman" , serif;">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 </span><a href="http://main.nationalmssociety.org/site/TR?px=4746151&pg=personal&fr_id=27007&et=nja3HRk9mBCLT-ix5RIZBA&s_tafId=450959" target="_blank"><span style="font-family: "times" , "times new roman" , serif;">here</span></a><span style="font-family: "times" , "times new roman" , serif;"> 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 <a href="http://main.nationalmssociety.org/site/TR?fr_id=27007&pg=informational&sid=13242&s_tafId=450959" target="_blank">route information here.</a> The route<span style="font-family: Times New Roman;"> 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?</span></span><br />
<span style="font-family: "times";"></span><br />
<span style="font-family: "times";">Our story was also featured in the National MS Society's blog Defeat MS about a month ago. You can read it <a href="http://defeatmsblog.com/bike-ms-rider-fundraising-story-caroline-b/" target="_blank">here.</a></span><br />
<br />
<div class="personal-page-description mobile-view-description" id="fr_rich_text_container">
<strong>Why do you Bike MS? </strong><br />
<strong></strong><br />
<span style="font-family: "georgia" , "times new roman" , serif;">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.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">
</span><span style="font-family: "georgia" , "times new roman" , serif;">Rather than being overwhelmed, Caroline has decided to do everything in her power to find more effective treatments and a cure<strong>.</strong>
</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">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. <strong>Caroline’s relentlessness has inspired so many, including me.</strong> <strong>Her determination led me to take action. That’s why I joined Bike MS.</strong>
</span><br />
<span style="font-family: "georgia";"></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDaksK4gLDWwJ23WUeuvrhpZxCEhbNgGtIW088jbFiu6ch4mMHXSFAOS3fBub4SiD2S_lYLdSudVqilNQxo8CgtYuIyPio-_I7FBFdrHweCKxUtBOJP56a5vO8plTzq818L5j_XgfEs1g/s1600/blog-carolinebandk-1-1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="124" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDaksK4gLDWwJ23WUeuvrhpZxCEhbNgGtIW088jbFiu6ch4mMHXSFAOS3fBub4SiD2S_lYLdSudVqilNQxo8CgtYuIyPio-_I7FBFdrHweCKxUtBOJP56a5vO8plTzq818L5j_XgfEs1g/s200/blog-carolinebandk-1-1.jpg" width="200" /></a><span style="font-family: "georgia" , "times new roman" , serif;">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.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">
</span><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihygd-Twh8PoxkakXH6rn1hU08QsYGmxDbWHjBMJcTp1zl2W9cgdoZFCRLYhVMmweV5Q9zgP9lw3VCqe4jGf1S4G4zZNAFQjWw8Xa3VSKcA2wzkJczY-IIyDbQzCec_NTmJKFeJtxlixw/s1600/24766.543793160.custom.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="112" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihygd-Twh8PoxkakXH6rn1hU08QsYGmxDbWHjBMJcTp1zl2W9cgdoZFCRLYhVMmweV5Q9zgP9lw3VCqe4jGf1S4G4zZNAFQjWw8Xa3VSKcA2wzkJczY-IIyDbQzCec_NTmJKFeJtxlixw/s200/24766.543793160.custom.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Caroline B at Bike MS in 2014</td></tr>
</tbody></table>
<span style="font-family: "georgia" , "times new roman" , serif;"><strong>How You Can Help Caroline and Kevin</strong>: </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">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!</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">
</span><br />
<strong><span style="color: #b45f06;">"Never Stop! Never Quit!"</span></strong> — Team Aumlet Motto<br />
<br />
Again, here is the link to <a href="http://main.nationalmssociety.org/site/TR?px=4746151&pg=personal&fr_id=27007&et=nja3HRk9mBCLT-ix5RIZBA&s_tafId=450959" target="_blank">Caroline's fundraising page</a>.<br />
<br />
<span style="font-size: x-small;">*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.</span></div>
Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-47079507047098521322016-03-05T09:37:00.002-05:002016-03-05T09:37:34.826-05:00A Tysabri Break Up.... and a New Relationship<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOSsfleHXduo5DKGbcVAqCc_q6FYjwZ7sKSbaDuAHJn_U3gpTU1XD0H3u6lHBkChA9Fx1TXERZOK0OrgoGOfKWl9RNeqmkvZTAxygERgvokNIoCf64U20mXTt3u_OJQhK6CTLyYAp_lEU/s1600/12650968_10153569941306713_2584932938936253738_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOSsfleHXduo5DKGbcVAqCc_q6FYjwZ7sKSbaDuAHJn_U3gpTU1XD0H3u6lHBkChA9Fx1TXERZOK0OrgoGOfKWl9RNeqmkvZTAxygERgvokNIoCf64U20mXTt3u_OJQhK6CTLyYAp_lEU/s320/12650968_10153569941306713_2584932938936253738_n.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First selfie from my first Rituxan Infusion</td></tr>
</tbody></table>
<div>
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. (<a href="https://www.tysabri.com/en_us/home/about/safety-side-effects.html" target="_blank">PML</a> 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!).</div>
<div>
</div>
<div>
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,</div>
<div>
</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbFl2MEzUGdgAWiFg-kzYUrjL9aJNiMziTlxj1Wo14MRPN_L2rIw2KZ8vt9RM3om0zxeW_LehIKodJPg9iDeYvEf2QQ5j8jVz66Oe-UOsMl933TN3JPv6LxrPT0MnEeA1J5a77YbglDkk/s1600/12654690_10153570839916713_4516451999662469945_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbFl2MEzUGdgAWiFg-kzYUrjL9aJNiMziTlxj1Wo14MRPN_L2rIw2KZ8vt9RM3om0zxeW_LehIKodJPg9iDeYvEf2QQ5j8jVz66Oe-UOsMl933TN3JPv6LxrPT0MnEeA1J5a77YbglDkk/s200/12654690_10153570839916713_4516451999662469945_n.jpg" width="112" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I kept busy with selfies!</td></tr>
</tbody></table>
<div>
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.</div>
<div>
</div>
<div>
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. </div>
<div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2a-10YeeMlRTsYmUSU1QQmAnTXTsdib36Wa9gSBiaPyhnEf3ExiNAHBKXOW-_AyjGrhY54u_m2K5qzbVnyrTiTn4FLkt54CinVRMoVYGhzgp-WwgNHoAnEqQRg_77A0HCBZzIJPf38jM/s1600/12745632_10153594937371713_3114345406207254132_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2a-10YeeMlRTsYmUSU1QQmAnTXTsdib36Wa9gSBiaPyhnEf3ExiNAHBKXOW-_AyjGrhY54u_m2K5qzbVnyrTiTn4FLkt54CinVRMoVYGhzgp-WwgNHoAnEqQRg_77A0HCBZzIJPf38jM/s320/12745632_10153594937371713_3114345406207254132_n.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Infusion #2</td></tr>
</tbody></table>
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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!!</div>
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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.</div>
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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 <a href="http://www.rituxan.com/" target="_blank">website</a> or to learn more about Rituxan and MS check out this <a href="https://multiplesclerosis.net/research/rituxan-rituximab/" target="_blank">article</a> from MultipleSclerosis.net.</div>
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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.... </div>
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Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com2tag:blogger.com,1999:blog-264582047565906041.post-64188811554824465812016-02-09T20:00:00.000-05:002016-02-09T20:00:49.741-05:00Summit Dinner for the Accelerated Cure Project for MS<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEzG3RrNW5EM9-c8aym_9-PeSG3moMqfU9SFNjZUQgWQ1Oof3zjMgGdsbzQTF0-znqcub2ZtyVWBxwN3fzazNpA-JTC2jPMb_z3Zitc_Rsp30lt7z0Zc5h3ladpcijMnsveSTi5eirmpo/s1600/12510426_10153547427116713_3171596369156896729_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEzG3RrNW5EM9-c8aym_9-PeSG3moMqfU9SFNjZUQgWQ1Oof3zjMgGdsbzQTF0-znqcub2ZtyVWBxwN3fzazNpA-JTC2jPMb_z3Zitc_Rsp30lt7z0Zc5h3ladpcijMnsveSTi5eirmpo/s320/12510426_10153547427116713_3171596369156896729_n.jpg" width="176" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span class="entity _4v1s" data-fulltext="Laura Kolaczkowski" data-group="all" data-icon="null" data-select="group" data-si="true" data-text="Laura Kolaczkowski" data-type="ent:user" data-uid="1760182989">Laura Kolaczkowski and Me</span><span data-si="true"></span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Abe and Me</td></tr>
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Abe and I were invited to join a group for the <a href="http://www.acceleratedcure.org/" target="_blank">Accelerated Cure Project for MS'</a> 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. <br />
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It was wonderful to see Laura again, who I worked with on<a href="https://www.createspace.com/5772440" target="_blank"> Something On Our Minds Volume III</a>, and to have met some new people involved with ACP. <br />
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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!<br />
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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.<br />
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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!)<br />
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<tr><td class="tr-caption" style="text-align: center;">The delicious dinner</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The dessert trio</td></tr>
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<br />Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-33807516517361881202016-01-25T18:57:00.000-05:002016-01-25T18:59:11.623-05:00Something On Our Minds (Volume III)<div dir="ltr">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOuJUfDzektZnawKUCp21r52D3qQr8bwOlHYKCcoj_gZL5Vh-FxGz_utBgdnXaH9ubR8Pm55n7zWrNc4JwnrUnjhFyKYdl3T1YKfUit3rWUX9JQlrTZG8gJS-JMgHg8IqUejJrNhUxAvA/s1600/20151210_181539.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOuJUfDzektZnawKUCp21r52D3qQr8bwOlHYKCcoj_gZL5Vh-FxGz_utBgdnXaH9ubR8Pm55n7zWrNc4JwnrUnjhFyKYdl3T1YKfUit3rWUX9JQlrTZG8gJS-JMgHg8IqUejJrNhUxAvA/s320/20151210_181539.jpg" width="180" /></a>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 (<a href="http://www.acceleratedcure.org/">http://www.acceleratedcure.org</a>). It was a lot of fun reading the submissions and contributing 3 new poems of my own. </div>
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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! <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCqetqbRgjJjwRleBIThBVFsgqZKcKPLi-yUqYECS_Wn_r041zCPE2DhZq3dG9z8nTNXxrLeLtR2dEJYdK_JvmF7u41yzZOI-i7VUwqynu5v0CF6G8Ar2U74SRUddCdMmo95wA0shOhAM/s1600/515bAi4w1YL.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCqetqbRgjJjwRleBIThBVFsgqZKcKPLi-yUqYECS_Wn_r041zCPE2DhZq3dG9z8nTNXxrLeLtR2dEJYdK_JvmF7u41yzZOI-i7VUwqynu5v0CF6G8Ar2U74SRUddCdMmo95wA0shOhAM/s200/515bAi4w1YL.jpg" width="132" /></a>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. </div>
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Abe was also able to contribute as by drawing a brain "dingbat" that was used throughout the book to separate paragraphs. </div>
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You can purchase SOOM Volume III on <a href="https://www.createspace.com/5772440" target="_blank">CreateSpace</a> as well as <a href="http://www.amazon.com/Something-Our-Minds-Vol-Accelerated/dp/1517598931?tag=duckduckgo-d-20" target="_blank">Amazon</a>. </div>
Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-74239676424273981092015-10-04T17:20:00.001-04:002015-11-08T17:25:20.839-05:00Fatigue, MS, Vacation - Oh My! (A Summer Tale)<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVrfqqb0CqXmuSvlHyPNsKYcq0R8O5FRHgQkRqqCt7rfH8fbM3J67nnCp-4GlHVvas5LtV-sN8qkOQsDsVtBqi_5FGvTlTzJc50TY3tteTdeKvMXZb3HrMe8e0AWqaHOGbu0blhqY7oYk/s1600/1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVrfqqb0CqXmuSvlHyPNsKYcq0R8O5FRHgQkRqqCt7rfH8fbM3J67nnCp-4GlHVvas5LtV-sN8qkOQsDsVtBqi_5FGvTlTzJc50TY3tteTdeKvMXZb3HrMe8e0AWqaHOGbu0blhqY7oYk/s200/1.jpg" width="138" /></a>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. <br />
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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.<br />
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! <br />
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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. ;)<br />
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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.<br />
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I have also been spending the summer working on Something On Our Minds Volume III (see post <a href="http://www.carolinekyriakou.blogspot.com/2015_05_01_archive.html" target="_blank">Ready, Set, Write!)</a> 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!<br />
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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!<br />
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<br />Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-28087834366719880182015-06-29T20:10:00.001-04:002015-11-08T17:30:19.798-05:00Help 2 Carolines for the Price of 1<table border="0" cellpadding="0" cellspacing="0" class="body-wrap"><tbody>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitjo-DJ6WfpV731GFiKHdxwgoaLpD5LoCsoT84IMCiAOSdsArHusSXP7dKSMJ0z0C-uuYQjY7vdMRkTzOP1dexZdjcUUj1khXr38aGYupxmBYcbG8pakxMG9w_s3J6nHIwvjRyiYz4DIM/s1600/BikeMS.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="64" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitjo-DJ6WfpV731GFiKHdxwgoaLpD5LoCsoT84IMCiAOSdsArHusSXP7dKSMJ0z0C-uuYQjY7vdMRkTzOP1dexZdjcUUj1khXr38aGYupxmBYcbG8pakxMG9w_s3J6nHIwvjRyiYz4DIM/s320/BikeMS.jpg" width="320" /></a></div>
My friend Caroline Blackledge is participating in Bike MS in Oregon at the end of July.<br />
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 <span id="shortcut_link"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank">http://main.nationalmssociety.org/goto/</a></span><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"><a href="http://main.nationalmssociety.org/goto/" target="_blank"></a><span id="shortcut_text"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"></a><a href="http://main.nationalmssociety.org/goto/" target="_blank"></a><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"></a><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"></a><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank">carolinesbikems</a>.</a></a></a></a></a></a></a></span></a></a></a></a><br />
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<strong>Help 2 Carolines for the Price of 1!</strong><br />
By Caroline Blackledge<br />
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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.<br />
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.<br />
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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.<br />
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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.<br />
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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.<br />
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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, <em>unComfortably Numb</em>. 2015 marked <em>unComfortably Numb</em>’s third year participating in Walk MS, which raised over $10,000 this year for MS research and support services.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYH7n4fokxtxO0ZuzJdb8RTOa6Jpu3UgWPCxqZOylby8V8eRhN423j1A2O9e1f2_FgKpw3sz-TKJqQidn4ikytc7sKZQtm4KWiA1TysoYfpigbz2-qG-t4Ub34hBslIHzT8zaSB7IFJ_s/s1600/2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="112" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYH7n4fokxtxO0ZuzJdb8RTOa6Jpu3UgWPCxqZOylby8V8eRhN423j1A2O9e1f2_FgKpw3sz-TKJqQidn4ikytc7sKZQtm4KWiA1TysoYfpigbz2-qG-t4Ub34hBslIHzT8zaSB7IFJ_s/s200/2.jpg" width="200" /></a>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 <em>Team Felicia: Orange is the new Pink!</em> (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.<br />
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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.”<br />
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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!<br />
<br />
Please visit <span id="shortcut_link"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank">http://main.nationalmssociety.org/goto/</a></span><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"><a href="http://main.nationalmssociety.org/goto/" target="_blank"></a><span id="shortcut_text"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank"></a><a href="http://main.nationalmssociety.org/goto/" target="_blank"><a href="http://main.nationalmssociety.org/goto/carolinesbikems" target="_blank">carolinesbikems</a></a></span> to donate.</a></td></tr>
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Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-87526123504650122422015-05-25T10:20:00.001-04:002015-11-08T17:32:31.320-05:00Ready, Set, Write!<div class="separator" style="clear: both; text-align: center;">
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I am so excited to share that submissions are now being accepted for
Something On Our Minds, Volume III (SOOM), an anthology of writi<span class="textexposedshow">ng by people connected to Multiple Sclerosis and
neurological disorders. <o:p></o:p></span><br />
<br />
<span class="textexposedshow">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!<br />
I have always enjoyed writing and to be able to share it with others in this
way has been amazing. <a href="http://www.carolinekyriakou.blogspot.com/2013_10_01_archive.html" target="_blank">I've Been Published!</a> pretty much explains it all.<o:p></o:p></span><br />
<br />
<span class="textexposedshow">I encourage YOU to submit something as
well.<span style="mso-spacerun: yes;"> </span>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.</span><br />
<br />
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.<br />
<br />
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.<br />
<br />
For complete details and submission guidelines, email <a href="mailto:soominds66@gmail.com">soominds66@gmail.com</a><br />
<br />
I hope I will see your name in SOOM!Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com2tag:blogger.com,1999:blog-264582047565906041.post-68192377045848405672015-03-19T18:28:00.000-04:002015-11-08T17:35:33.181-05:00Raising MS Awareness with The Modified Dolls<div class="separator" style="clear: both; text-align: center;">
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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.<br />
<br />
<span class="null">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!<br />
<br />
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.<br />
<br />
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<br />
.<br />
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.</span><br />
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!<br />
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Here is the Q&A I did earlier this month.<br />
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<span class="null"><strong>1. What is multiple sclerosis? How long have you been battling- when were you diagnosed?</strong> <br />
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."<br />
<br />
<strong>2. Who gets MS? Does age or race matter at all?</strong> <br />
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.<br />
<br />
<strong>3. What are the typical symptoms of MS? And what are your personal symptoms?</strong> <br />
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. <br />
<br />
<strong>4. Does MS always cause paralysis?</strong> <br />
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.<br />
<br />
<strong>5. What medications and treatments are available? What type of treatments do you experience personally?</strong><br />
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!"<br />
</span><br />
<span class="null">If you would like to learn more about The Modified Dolls, please check out their website: <span class="null"><a class="_553k" href="http://www.themodifieddolls.org/" rel="nofollow" target="_blank">http://www.themodifieddolls.org</a></span></span><br />
<span class="null"><span class="null"><a class="_553k" href="http://www.themodifieddolls.org/" rel="nofollow" target="_blank">
</a></span></span><br /></div>
Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-20934666451259369892015-02-17T19:50:00.001-05:002015-11-08T17:40:08.744-05:00iConquerMSA few weeks ago I heard about a new initiative called <a href="https://iconquerms.org/" target="_blank">iConquerMS</a>. 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. <br />
<br />
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!<br />
<br />
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 <a href="http://www.bostonglobe.com/business/2015/02/04/portal-launched-waltham-nonprofit-promotes-patient-centered-multiple-sclerosis-research/RP0MIPVmBmqzEQgdpNiejO/story.html" target="_blank">here</a>.<br />
<br />
I was honored that the ACP thought of me to speak about iConquerMS and I am proud to support it. Also, my friend, Laura <span class="fwb fcg" data-ft="{"tn":";"}">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 <a href="http://carolinekyriakou.blogspot.com/2014/09/the-accelerated-cure-project-for-ms-all.html" target="_blank">The Accelerated Cure Project for MS.</a> 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.</span><br />
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. <br />
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Let's hope we can get 20,000 people to sign up and let's get this research started!<br />
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<br />Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com1tag:blogger.com,1999:blog-264582047565906041.post-42008595447935868082014-09-21T17:52:00.001-04:002015-11-08T18:20:14.852-05:00The Accelerated Cure Project for MS "All Star Event" at Fenway Park<div style="text-align: left;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ742H7wbAgKHw1qrp2E_eZu2Jxj-Ufy8OhecOhya5eAEgSmjlKaigjoaHuGZE7hYO1kybFCU2dxJS6_FHFFy5Bt79lZg7HPh8naqKHGaLM6huVUg-gqvQMxEAUj2nkd8_ZRLOAmPty0c/s1600/4.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ742H7wbAgKHw1qrp2E_eZu2Jxj-Ufy8OhecOhya5eAEgSmjlKaigjoaHuGZE7hYO1kybFCU2dxJS6_FHFFy5Bt79lZg7HPh8naqKHGaLM6huVUg-gqvQMxEAUj2nkd8_ZRLOAmPty0c/s200/4.jpg" width="112" /></a>The <a href="http://www.acceleratedcure.org/" target="_blank">Accelerated Cure Project for MS</a> 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.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ6ShYz2Ck4cUyij4C7vD-vDQet9eElATz-V2gSeecpx2T0nuIOoPWsv0ONWxlNthyphenhyphenqnRiOHOLOHnHue6LqYoHW1fEdS5j8BP_SdG-4Mo1xeTjzOSjKTldAuCbvYFrJDPM45o38vs1r9k/s1600/102.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ6ShYz2Ck4cUyij4C7vD-vDQet9eElATz-V2gSeecpx2T0nuIOoPWsv0ONWxlNthyphenhyphenqnRiOHOLOHnHue6LqYoHW1fEdS5j8BP_SdG-4Mo1xeTjzOSjKTldAuCbvYFrJDPM45o38vs1r9k/s200/102.jpg" width="115" /></a>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.</div>
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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.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJPSUlHobDkrSHWSTCzUyt2dsl9H7MGVS3XAc3rOYbtunqMqAimAil2zMe-sykQRhP_0Ub9LxfT5Bk2W8tR_Bs5uIaZ9uibOUXTZ3YGsWw8bz38rKPZMHPgteoma8s8d01uPioz-sZw1s/s1600/DSCN0099.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJPSUlHobDkrSHWSTCzUyt2dsl9H7MGVS3XAc3rOYbtunqMqAimAil2zMe-sykQRhP_0Ub9LxfT5Bk2W8tR_Bs5uIaZ9uibOUXTZ3YGsWw8bz38rKPZMHPgteoma8s8d01uPioz-sZw1s/s200/DSCN0099.JPG" width="200" /></a>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.</div>
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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 <a href="http://insidemystory.com/" target="_blank">Inside My Story</a> and often contributes to <a href="http://multiplescelerois.net/">MultipleScelerois.net</a>.</div>
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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."</div>
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So far they have raised over $109,000 for ACP!</div>
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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.</div>
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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! <br />
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To learn more about Accelerated Cure Project for MS go to: <a href="http://www.acceleratedcure.org/">http://www.acceleratedcure.org</a><br />
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Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-48024823663490329662014-08-07T18:38:00.001-04:002015-11-09T19:08:16.882-05:00Caroline B's Bike MS Journey 2014 - A Guest Blog by Caroline Blackledge<div id="yiv3878470111yui_3_16_0_6_1407269583504_4" style="background-color: transparent;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTSjBF-UJnPUlMfx6K_R_UuK3pU7svTlv3mt2zfHafwo0-HgetXLdC8GTB2yxmWqA-re0JxX4aLbCxXAUi_zrAFE9XaqnkLyIazPa2h0wd4H5ZmeX9FKMUnG1Z7AHBPYv95EevSYDknSQ/s1600/7.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTSjBF-UJnPUlMfx6K_R_UuK3pU7svTlv3mt2zfHafwo0-HgetXLdC8GTB2yxmWqA-re0JxX4aLbCxXAUi_zrAFE9XaqnkLyIazPa2h0wd4H5ZmeX9FKMUnG1Z7AHBPYv95EevSYDknSQ/s320/7.jpg" width="177" /></a>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.)</div>
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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). <span style="background-color: transparent;">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).</span></div>
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<span style="background-color: transparent;">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.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2Y1cdIJDGiojDBWg8KmawNHSiT_VD9F4Wyo4oMVUSD_5r9yNDVWfzU1BqWvjKOJ_IqJtWB7i3UfsMQMOTBDeXP2jopq9zFgyGfBFQHB3PZ0OWkCVm1nEkoJXxGPzz_o63_eweaplsRYU/s1600/1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2Y1cdIJDGiojDBWg8KmawNHSiT_VD9F4Wyo4oMVUSD_5r9yNDVWfzU1BqWvjKOJ_IqJtWB7i3UfsMQMOTBDeXP2jopq9zFgyGfBFQHB3PZ0OWkCVm1nEkoJXxGPzz_o63_eweaplsRYU/s320/1.jpg" width="320" /></a>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.</div>
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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.</div>
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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.)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqVImi5gfBVa5aU4qJ6X5Q2OLDFnAmnxOTfSekyuH3ddwkq2fgflk_osXgn1kF2T_UuUoAXraeyV24RABOrnnTbV9aHxSoYl_ZZWAD5zqstN0Yl596j-g1M78ZobqcHXASLbpF_3o_9H8/s1600/6.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="112" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqVImi5gfBVa5aU4qJ6X5Q2OLDFnAmnxOTfSekyuH3ddwkq2fgflk_osXgn1kF2T_UuUoAXraeyV24RABOrnnTbV9aHxSoYl_ZZWAD5zqstN0Yl596j-g1M78ZobqcHXASLbpF_3o_9H8/s200/6.jpg" width="200" /></a>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: <span style="font-style: italic;">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.</span> 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. <span style="background-color: transparent;">Despite having little desire to complete a second 100-mile bike ride, we were successful in doing so!</span></div>
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<span style="background-color: transparent;">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.</span></div>
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<span style="background-color: transparent;">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.</span><span style="background-color: transparent;"></span><br />
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<span style="background-color: transparent;">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.</span></div>
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<span style="background-color: transparent;">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.</span></div>
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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.</div>
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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.</div>
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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!!!</div>
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Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-63334232753182150872014-07-28T20:21:00.002-04:002015-11-09T19:10:09.885-05:00Bike MS 2014<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlSaHs6O1ec225Yd_tCtaxXz7eKMXHWnakyoiZCmQBuAHy1NRwjN3XOXD0CmQrKqDz-MTYZFVnfBxecTFmpEVdPkIxo1VJtS6uOTfgjklu8JvTfzuDCA3V5O2wuy3jH-P_VxAudD1cWIg/s1600/BikeMS.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="64" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlSaHs6O1ec225Yd_tCtaxXz7eKMXHWnakyoiZCmQBuAHy1NRwjN3XOXD0CmQrKqDz-MTYZFVnfBxecTFmpEVdPkIxo1VJtS6uOTfgjklu8JvTfzuDCA3V5O2wuy3jH-P_VxAudD1cWIg/s320/BikeMS.jpg" width="320" /></a></div>
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My long time friend, Caroline Blackledge, is participating in Willamette Valley's (outside of Portland, Oregon) Bike MS this weekend! <br />
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! <br />
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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 <a href="http://main.nationalmssociety.org/site/TR?px=4746151&pg=personal&fr_id=22739&et=_MrwNSWIXklR7eV9ThJswA&s_tafId=389956" target="_blank">here</a>. 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!<br />
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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 <a href="http://carolinekyriakou.blogspot.com/2013/08/bike-ms-guest-blog-by-caroline-b.html" target="_blank">here.</a> 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 <a href="http://carolinekyriakou.blogspot.com/2013/07/inspiring-others-to-raise-awareness.html" target="_blank">Inspiring Others to Raise Awareness</a>.<br />
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!<br />
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<br />Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-73280478201545061502014-07-05T10:20:00.001-04:002015-11-09T19:13:16.946-05:00MS Madness! A "Giggle More, Cry Less" Story of Multiple Sclerosis Book Review<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: black; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Helvetica; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">MS Madness! A "Giggle More, Cry Less" Story of Multiple Sclerosis </span><span style="mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">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.<span style="mso-spacerun: yes;"> </span></span><span style="color: black; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Helvetica; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif; line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">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 http://yvonnedesousa.com about
her journey with MS.</span></div>
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<span style="line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span style="font-family: "georgia" , "times new roman" , serif;">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.<span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">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. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">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. <span style="mso-spacerun: yes;"> </span>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.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">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.<span style="mso-spacerun: yes;"> </span>Our friendship bloomed from
there. <span style="mso-spacerun: yes;"> </span>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!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6-XLoD5_m5Caz6U02DopUlgH5zCWyEEMYDY_XFrUPdE457mKmm8lJbj6xPPK5YCO7nfIlg2UTlIMaMfFo2hQtWbpk5dm0S8a8ePbAd74pvwuQYAECfBfwCM4HPTfnUQkrsQtSWbOlkEc/s1600/YvonneDesousa.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6-XLoD5_m5Caz6U02DopUlgH5zCWyEEMYDY_XFrUPdE457mKmm8lJbj6xPPK5YCO7nfIlg2UTlIMaMfFo2hQtWbpk5dm0S8a8ePbAd74pvwuQYAECfBfwCM4HPTfnUQkrsQtSWbOlkEc/s1600/YvonneDesousa.png" /></a><span style="font-family: "georgia" , "times new roman" , serif;"><span style="line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">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 <span style="color: black; line-height: 115%; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Helvetica; mso-hansi-theme-font: major-latin;">portion of the proceeds of each book goes to agencies helping people with chronic illness.<o:p></o:p></span></span></span></div>
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<span style="font-family: "cambria" , "serif"; line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.amazon.com/MS-Madness-Yvonne-Desousa/dp/0989972364/ref=sr_1_1?s=books&ie=UTF8&qid=1404569932&sr=1-1&keywords=ms+madness+by+yvonne+desousa" target="_blank">Amazon</a></span></div>
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<span style="font-family: "cambria" , "serif"; line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><span id="goog_1096109088"></span><a href="http://www.barnesandnoble.com/w/ms-madness-yvonne-desousa/1119617093?ean=9780989972369" target="_blank">Barnes and Noble<span id="goog_1096109089"></span></a></span></div>
<span style="font-family: "cambria";"><a href="http://www.abebooks.com/servlet/BookDetailsPL?bi=12190181817&searchurl=kn%3Dms%2Bmadness%2Byvonne%2Bdesousa%26amp%3Bsts%3Dt%26amp%3Bx%3D0%26amp%3By%3D0" target="_blank">Abe Books</a></span><br />
<br />Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-71981446851928747772014-06-22T11:36:00.000-04:002015-11-09T19:15:47.983-05:00"When I Walk"<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZREAr3778Za_M73KcHixvT6Twjp9PbgGWZpbHlsYS2RA6z1P1UrQG-XDbplWhBrC-wBXTFydYaQvwkYsk85pUD80dxy-M1Z7LO1QhDYZjie8SKPzVUmbY2u-Bntee000xx4oNtum8gnI/s1600/1439321745850.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="189" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZREAr3778Za_M73KcHixvT6Twjp9PbgGWZpbHlsYS2RA6z1P1UrQG-XDbplWhBrC-wBXTFydYaQvwkYsk85pUD80dxy-M1Z7LO1QhDYZjie8SKPzVUmbY2u-Bntee000xx4oNtum8gnI/s320/1439321745850.jpg" width="320" /></a></div>
<span style="font-size: small;">"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.</span><br />
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<span style="font-size: small;">J</span><span style="font-size: small;">ason 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 <a href="http://wheniwalk.com/">http://wheniwalk.com</a>.</span></div>
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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 <a href="http://wheniwalk.com/axs-map">http://wheniwalk.com/axs-map</a>. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVfuqm_10CNqwcYN4ix2t9f8lE2TWh2tno0rqz3S3UmRb_O1yaP4rEtc7FSbGwppURnSZmEWfDD2ehmK67K4ij24YLGDzMespLHPUrY0wAHYhR5UNh0X7uEWuYoXmWgWgLchDF9bZde1M/s1600/headshot.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVfuqm_10CNqwcYN4ix2t9f8lE2TWh2tno0rqz3S3UmRb_O1yaP4rEtc7FSbGwppURnSZmEWfDD2ehmK67K4ij24YLGDzMespLHPUrY0wAHYhR5UNh0X7uEWuYoXmWgWgLchDF9bZde1M/s320/headshot.jpg" width="320" /></a></div>
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In the last Momentum MS Magazine, Jason DaSilva was featured. Read his story here and more about the film. <a href="http://www.momentummagazineonline.com/reel-life-ms/">http://www.momentummagazineonline.com/reel-life-ms/</a></div>
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<span style="font-size: small;">The film premiers on television tomorrow, Monday, June 23rd. </span></div>
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<span style="font-size: small;">Locally, it airs at 10pm, but here is the link to find out exactly what time it will be aired in your area. </span><a href="http://www.pbs.org/pov/wheniwalk/"><span style="font-size: small;">http://www.pbs.org/pov/wheniwalk/</span></a></div>
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<span style="font-size: small;">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!</span></div>
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Now let the rest of us help spread MS Awareness too!</div>
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Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-19483749924640023132014-06-07T10:50:00.000-04:002015-11-09T19:16:54.734-05:00Bean's Spring Update<div style="text-align: right;">
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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!)<br />
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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!<br />
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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 <span id="therm-achieved-amount">$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!</span><br />
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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. <br />
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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!<br />
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<br />Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-73532782545079071772014-03-28T19:36:00.002-04:002015-11-09T19:18:00.210-05:00Walk MS 2014<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTYlEuptybz5NBNXEmGA3ZxT4bYxwhBtdJfPcEjkSTqtTci93CHv-7_cPhaiDoBsShX8aJp6ZKS3y8iqQO-uqNyVakH2qNJaHT3sCzB_mfL-kw0H1cmETlWHAHaUrJTXvaHY5awMkF1tI/s1600/Walk+MS+2012.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTYlEuptybz5NBNXEmGA3ZxT4bYxwhBtdJfPcEjkSTqtTci93CHv-7_cPhaiDoBsShX8aJp6ZKS3y8iqQO-uqNyVakH2qNJaHT3sCzB_mfL-kw0H1cmETlWHAHaUrJTXvaHY5awMkF1tI/s1600/Walk+MS+2012.jpg" /></a><span style="font-size: 12pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><span style="font-family: "calibri";">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<span style="mso-spacerun: yes;"> </span>be a part of such a special
day!</span></span></div>
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<span style="font-family: "calibri";"><span style="font-size: 12pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;">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!</span></span></div>
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<span style="font-family: "calibri";"><span style="font-size: 12pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;">In
order to end MS we need to do it together! If you are able to help me achieve
my fundraising goals, please go </span><span style="font-size: 12pt;"><span style="color: windowtext;"><a href="http://main.nationalmssociety.org/goto/KaliopeK2014" target="_blank">here</a></span></span><span style="color: #ff6600;"> </span>to<span style="font-size: 12pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"> get to my secure personal page to make
a donation of any amount. Every dollar counts! <o:p></o:p></span></span></div>
<span style="font-size: 12pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><o:p><span style="font-family: "calibri";"></span></o:p></span><br />
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<span style="font-size: 12pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;"><span style="font-family: "calibri";">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!</span></span></div>
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<span style="font-family: "calibri";"><span style="font-size: 12pt; mso-ascii-font-family: Calibri; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman"; mso-hansi-font-family: Calibri;">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! </span><span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></span></div>
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Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-66953884523255254612014-02-10T19:46:00.001-05:002015-11-09T19:26:24.881-05:00MS Warrior: An Interview with Lori Grande<div style="text-align: left;">
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVh-O0k9qcRbBQy8aqhlRmYcthxyCqKRFYIM8rLCkeZxtS5GesGFz1JghBs-NTf25RUn6Dcpt2ZCOGXeT0sQaRdeJGLVwoLVvO8zO8wntlU2kgrOsqSQhPnua3bZsCiCJsu1FQ9xGpIpg/s1600/LoriGrande.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVh-O0k9qcRbBQy8aqhlRmYcthxyCqKRFYIM8rLCkeZxtS5GesGFz1JghBs-NTf25RUn6Dcpt2ZCOGXeT0sQaRdeJGLVwoLVvO8zO8wntlU2kgrOsqSQhPnua3bZsCiCJsu1FQ9xGpIpg/s1600/LoriGrande.jpg" /></a></div>
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">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. </span><span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"></span></div>
<div style="text-align: right;">
</div>
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<b><span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">1.
When were you diagnosed with MS?</span></b></div>
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">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.</span><br />
<span style="font-family: Courier New; font-size: x-small;"></span><br />
</div>
<b><span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">2.
What was your initial reaction to your diagnosis?</span></b><br />
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">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.</span><br />
</div>
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<b><span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">3.
How did your diagnosis effect your job, if any?</span></b></div>
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";"><span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">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 </span></span><span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";"><span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">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.</span></span><br />
</div>
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";"><b><span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">4.
What is something positive MS has brought to your life?</span></b></span></div>
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";"><span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">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.</span></span><br />
</div>
<span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";"></span><br />
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";"><b><span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">5.
How do you manage your MS?</span></b></span></div>
<span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">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.</span><br />
</div>
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<b><span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">6.
How did you get involved with Fashion Plates?</span></b></div>
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">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.</span><br />
</div>
</span><div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: 0in; tab-stops: 45.8pt 91.6pt 137.4pt 183.2pt 229.0pt 274.8pt 320.6pt 366.4pt 412.2pt 458.0pt 503.8pt 549.6pt 595.4pt 641.2pt 687.0pt 732.8pt;">
<b><span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">7.
Are you involved with any other MS fundraisers?</span></b><span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">
</span></div>
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<span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">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.</span><br />
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<b><span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">8.
Do you ever talk about your MS on your morning show?</span></b></div>
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<span style="color: black; font-family: "courier new"; font-size: 10pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";">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.</span><span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"></span></div>
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Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-50414372292679905842014-01-11T11:22:00.001-05:002015-11-09T19:27:46.544-05:00Winter Asthma Blues<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinBPV8LHsAV5LhDByQHA7pWvBUu4Eak3OTmHTVzdS5IRD1JcLnIxqWxZw8REP8J_PULdW5dXnNr8oU1V0JCT0XwgGTmfTmgEQS1IhmueUSeqvAQpQiFUi50YIHqnb-_o8wWjbs4dNhJK4/s1600/pict0583.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinBPV8LHsAV5LhDByQHA7pWvBUu4Eak3OTmHTVzdS5IRD1JcLnIxqWxZw8REP8J_PULdW5dXnNr8oU1V0JCT0XwgGTmfTmgEQS1IhmueUSeqvAQpQiFUi50YIHqnb-_o8wWjbs4dNhJK4/s320/pict0583.JPG" width="320" /></a></div>
<span style="font-family: "calibri";">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<span style="mso-spacerun: yes;"> </span>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.</span><br />
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<span style="font-family: "calibri";"><span style="mso-spacerun: yes;"> </span>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. <span style="mso-spacerun: yes;"> </span>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.</span></div>
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<span style="font-family: "calibri";">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. </span></div>
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<span style="font-family: "calibri";">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.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">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!!<span style="mso-spacerun: yes;"> </span>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!</span></div>
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<o:p><span style="font-family: "calibri";"> </span></o:p></div>
Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com7tag:blogger.com,1999:blog-264582047565906041.post-24774737720294876552013-11-11T19:09:00.000-05:002015-11-09T19:32:17.208-05:00Fashion Plates<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjZLqwx8f4PJcE7eNGM8bwdARi0vGMFZOmUvSfjnhbiXB1omj1QEFdlO4kYAFLsqfv3Li70pxMtx-_3HMgcEsTzR5wfyvILh8bYPTJ3Z8OEQb_-guYBZW8xXIBQHoirVFFu91XoaXA-Pc/s1600/20131108_120758.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjZLqwx8f4PJcE7eNGM8bwdARi0vGMFZOmUvSfjnhbiXB1omj1QEFdlO4kYAFLsqfv3Li70pxMtx-_3HMgcEsTzR5wfyvILh8bYPTJ3Z8OEQb_-guYBZW8xXIBQHoirVFFu91XoaXA-Pc/s200/20131108_120758.jpg" width="150" /></a></div>
<span style="font-family: "calibri";">Fashion Plates is a fundraiser for the Greater New England
National MS Society, which was held November 8th at the Sheraton Boston. I was
fortunate to be invited to this wonderful event by the National MS Society. <span style="mso-spacerun: yes;"> </span>All of the women at my table were invited for
their participation in Walk MS and the Challenge Walk. </span><br />
<div style="text-align: right;">
<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYSqrfhyphenhyphencydAKilimdMZLZZS4EFpOGiBQ-YK_VSOf75AzYeSDQrS0ONeKtsA4zKJu69kA1fwiKcpnSwLp2C9LB6tNCBJTIVk_Uq46B99EiJbcwjCgVbwm8qXM4mIKwSfkOr8oZ69TMNcQ/s1600/20131108_134527.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYSqrfhyphenhyphencydAKilimdMZLZZS4EFpOGiBQ-YK_VSOf75AzYeSDQrS0ONeKtsA4zKJu69kA1fwiKcpnSwLp2C9LB6tNCBJTIVk_Uq46B99EiJbcwjCgVbwm8qXM4mIKwSfkOr8oZ69TMNcQ/s200/20131108_134527.jpg" width="150" /></a><span style="font-family: "calibri";">The day started with a reception where wine and mimosas were
offered. There was a photo collage on display from last year's event and wonderful
raffle prizes, 9 in total. <span style="mso-spacerun: yes;"> </span>There was a
sports gift basket with a football autographed by the Patriots, game tickets,
memorabilia and equipment, a gift basket of $1000 worth of scratch tickets, an
indulgence basket with spa treatments and a gift basket offering Lasik surgery,
by the office I go to for my eye care, which I thought was extremely generous. I
entered once for the indulgences gift basket and two entries for the scratch
tickets twice, but didn't win. I was hoping I could write a blog about becoming
a millionaire instead! ;)</span></div>
<div style="text-align: right;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRgzUSyYyj3pOO-Q82z-9J_InsNEG3U_fJ8tKVrCccWa2fYCrwVStpMzw6qwFEGPyHf3s2FXeiSLmZH5ZOyndCV6L-rM0A1rAx1Tx3PAPXjDF9YIgIfQeZUyo9A1TN7IyRHnCzvkFuCCc/s1600/20131108_133832.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRgzUSyYyj3pOO-Q82z-9J_InsNEG3U_fJ8tKVrCccWa2fYCrwVStpMzw6qwFEGPyHf3s2FXeiSLmZH5ZOyndCV6L-rM0A1rAx1Tx3PAPXjDF9YIgIfQeZUyo9A1TN7IyRHnCzvkFuCCc/s200/20131108_133832.jpg" width="200" /></a><span style="font-family: "calibri";">The event was hosted by Lori Grande, co-host of<span style="mso-spacerun: yes;"> </span>the "JW and Lori in the Morning”
show on Country 102.5. Lori herself has MS and told us how much she
enjoyed hosting the event in years past and was glad to be back.<span style="mso-spacerun: yes;"> </span>We were served a delicious corn chowder soup,
quiche and a green bean salad for lunch and a decadent chocolate banana torte
for dessert. At each table setting was a party favor of pink cookie in the
shape of a dress. It was adorable and delicious!</span></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTxwKnmWDn6LIwxwo6mYMoptQAsCs4iAPdwG00LgPtWwF8lEW129ouh3n1BiRu2-tKZeWZDkKoGoGRyBsoG3yZZdTxJa02xz2P-2V2SP8rEs8h-49lgJ3UdZjulZBhD0gBWjirkfGYOik/s1600/20131108_114605.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTxwKnmWDn6LIwxwo6mYMoptQAsCs4iAPdwG00LgPtWwF8lEW129ouh3n1BiRu2-tKZeWZDkKoGoGRyBsoG3yZZdTxJa02xz2P-2V2SP8rEs8h-49lgJ3UdZjulZBhD0gBWjirkfGYOik/s200/20131108_114605.jpg" width="150" /></a><br />
<div style="text-align: left;">
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<span style="font-family: "calibri";">There were three parts to the fashion show and each model
participated in all three sections with three different outfits and hairstyles.
All of the models have MS and have amazing stories which was shared with us as
they walked the runway. The models were also of all ages and progressions,
which was great to see. The fashion show </span><span style="color: black; font-family: "arial" , "sans-serif"; font-size: 10pt; line-height: 115%;">featured
clothing lines from Ports & Co., a store in Cohasset, MA. They have
beautiful clothes for everyday and special occasions. <o:p></o:p></span></div>
<br />
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<span style="color: black; font-family: "arial" , "sans-serif"; font-size: 10pt; line-height: 115%;">The ballroom was filled with more than 600
people, all supporting MS research and finding a cure. It was a very special
event, I am so glad I joined for this event! It is a day I will never forget!</span></div>
<br />
<br />
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<br />Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0tag:blogger.com,1999:blog-264582047565906041.post-38931207891002380352013-10-03T19:47:00.003-04:002015-11-09T19:35:38.763-05:00I've Been Published!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijPTR03Zj-e4Cp6BzbKx92_MLmi4aYW7ZuCwbEJP8eOWjou_OulYStMCd4TcTTFEhgjEIwjJN4Fc6NXumzkgtcJdmByNSdh2JU9N9gvk_M4FiU7LXNj5X3gGNBxR4dkw2T80LltkVmE3k/s1600/51WLpnSmfAL__AC_UL320_SR214%252C320_.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijPTR03Zj-e4Cp6BzbKx92_MLmi4aYW7ZuCwbEJP8eOWjou_OulYStMCd4TcTTFEhgjEIwjJN4Fc6NXumzkgtcJdmByNSdh2JU9N9gvk_M4FiU7LXNj5X3gGNBxR4dkw2T80LltkVmE3k/s1600/51WLpnSmfAL__AC_UL320_SR214%252C320_.jpg" /></a><span style="font-family: "calibri";">It has been a lifelong dream of mine to have my writing
published, and now I am thrilled to say I have been published in two
anthologies. I have enjoyed writing for most of my childhood and adult life.
Whether it was writing a letter to a pen pal (at one point I had over 100!), a
poem, a work of fiction or making a zine with my best friend in high school,
writing has always been an important part of my life. After my diagnosis I
decided to combine my passion for raising MS awareness with my love of writing.
<span style="mso-spacerun: yes;"> </span>I also love reading, which is fortunate
since I part of two amazing anthologies. The other pieces in both of these
books speaks to all us, whether we have MS or not. I think with the holidays
coming before we know it, these both would make great gifts.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDu4KW2eCPlrmJUkFjTR2FaJuelT5ReNVF0ujl_ft4JP33ZZA3t4G9vYHKtyy8TbwGXY7w6-YWlVDAg43yciL4LXD7sBYIhf_uLAdkU8jNtNajYyS6foT7iE0Pn3k1FNnXxNFJWrSwZQs/s1600/51lqVPQlI%252BL__SY344_BO1%252C204%252C203%252C200_.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDu4KW2eCPlrmJUkFjTR2FaJuelT5ReNVF0ujl_ft4JP33ZZA3t4G9vYHKtyy8TbwGXY7w6-YWlVDAg43yciL4LXD7sBYIhf_uLAdkU8jNtNajYyS6foT7iE0Pn3k1FNnXxNFJWrSwZQs/s320/51lqVPQlI%252BL__SY344_BO1%252C204%252C203%252C200_.jpg" width="213" /></a><span style="font-family: "calibri";">The first anthology is called Something On Our Minds which consists
of many essays and poems from a group of writers called We Write for the Fight.<span style="mso-spacerun: yes;"> </span>My piece is about my journey with MS, the ups
and downs I've had and things I've learned along the way. <span style="mso-spacerun: yes;"> </span></span><span style="font-family: "calibri";"> </span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";">The second anthology is called Touching MS and consists entirely
of poems. I have two poems in this book and all of the poems are broken up into
categories: Diagnosis, Pain & Anger, Questions and Confusion, Acceptance,
Longing, Hope, Kinship, Humor and Gone, But Not Forgotten.</span></div>
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<span style="font-family: "calibri";">Proceeds from both books go to the National MS Society and can
be purchased on Amazon.com. If you are also a writer, both anthologies are
planning a Volume 2. Maybe I will see YOU in the next volumes?!</span><span style="font-family: "calibri";"> </span><br />
<br /></div>
</div>
Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com2tag:blogger.com,1999:blog-264582047565906041.post-45476071398840901532013-08-16T19:09:00.001-04:002015-11-09T19:36:58.412-05:00Bike MS - A Guest Blog by Caroline B.<br />
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNHLjXjslAlslZkwkGBHFnCosCB0PZIxp_60MiHQ8XtgPYqwlf1Hw919AwY0Hv6zitQ1R5PtZWNIbyj5pXazggvZPjQvrJXysWsL84L3yDTvH2Y1mqKB6qnnOeTAoBzMifnAOFoSUcdXQ/s1600/BikeMS.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="64" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNHLjXjslAlslZkwkGBHFnCosCB0PZIxp_60MiHQ8XtgPYqwlf1Hw919AwY0Hv6zitQ1R5PtZWNIbyj5pXazggvZPjQvrJXysWsL84L3yDTvH2Y1mqKB6qnnOeTAoBzMifnAOFoSUcdXQ/s320/BikeMS.jpg" width="320" /></a></div>
<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: "georgia" , "times new roman" , serif;"><em>This month I have a guest blogger, my
longtime friend, Caroline. She participated in Oregon's Bike MS in my honor
last weekend. When I asked what her experience was like, this was her very touching response:</em></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span><br /></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">In February of this year, I
participated in my first organized bicycling ride, "The Worst Day of the
Year Ride", in Portland, Oregon. This ride was created to be a fun
event held on what is, supposedly, statistically, Portland's
worst weather day of the year. After I finished the ride,
I encountered a booth full of flyers for several upcoming
organized cycling events. One flyer in particular caught my
attention--Bike MS. I first was drawn to this ride because of my longtime
friend, Caroline Kyriakou, who was diagnosed with Multiple Sclerosis a few
years back and has since been very active in the MS community,
including leading her own Walk MS team in her hometown of Boston.<o:p></o:p></span></div>
<br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">I must admit that my decision to
participate in Bike MS, in part, was for personal and somewhat
selfish reasons. As described in the Bike MS flyer, the
ride was a two-day cycling event held in August. Both days
of the ride began in the small college town of Monmouth, Oregon (home to
Western Oregon University), ran through scenic parts of rural Oregon, and
then looped back to Monmouth at the end of that day's ride. So, in
addition to supporting a close friend's cause, I thought it sounded like a
lovely idea to be able to challenge myself physically by cycling some
to-be-determined, large number of miles through beautiful parts of Oregon
during the state's brief sunny season! I grew excited, yet nervous due to
the length of the ride, about the possibility of participating in Bike MS.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">For months after The Worst Day
of the Year Ride, the Bike MS flyer remained on the floor of my car, where many
a flier has been left until its day of doom--the time it finally
meets my recycle bin. However, some part of me couldn't bear to
part with the Bike MS flyer. Perhaps it was the part of me who knew that
the athletically un-inclined and inexperienced cyclist in me could actually
finish a bike ride longer than anything I had previously fathomed.
Perhaps it was my friend Caroline telling me that I, too, could become active
in the MS community and could make a positive difference!<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">Never one to be stingy by
keeping physically-exhausting workouts to myself, I sought to enlist
a partner with whom I could share this experience. The length of the ride
scared off my boyfriend Ben, so I asked my physically-fit friend and colleague,
Deb, to join me. Like me, Deb was a relatively inexperienced cyclist, but
was up for the challenge! Once I had found solace in finding a
cycling buddy, I finally made the commitment by signing up for Bike MS in
June, and became part of a very warm Bike MS Oregon community.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">Prior to the date of the Bike
MS ride, the National Multiple Sclerosis Society (NMSS) Oregon Chapter
held multiple welcoming events. At a Happy Hour Meet and Greet, the
staff at the NMSS were more than willing to answer my numerous questions and
set my mind at ease about the length of the ride. With their help, I was
able to raise more than double the minimum fundraising requirement by fully
utilizing my Bike MS fundraising webpage. I was also informed of an
upcoming 52-mile practice ride, which at that time, was longer than any ride I
had completed. To gain more cycling experience, I decided to participate
in the practice ride. As the only woman, I brought up rear of the
cyclists, but the participants and support staff were phenomenal
in helping me along this challenging ride, waiting for me to arrive
at all rest stops and serving as my cheerleaders along the way. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">The next phase was the actual Bike
MS event itself. Bike MS offered six routes of different lengths over the
event's two days and, by then, Deb and I had finally agreed that we would
ride 100 miles in total.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">On the Friday evening before the
ride, Deb and I drove the one-and-a-half hour drive from Portland to Monmouth
and checked in to our rooms at beautiful Western Oregon University, which
graciously lends its campus to Bike MS each year. Early the next
morning, Deb and I set out on the longest ride either of us had completed, 64
miles. We rode a scenic loop, heading east from Monmouth, through rural
farming communities and wineries. The last ten miles were particularly
challenging for me, but I kept my friend Caroline in the forefront of my mind
and, by the time Deb and I crossed the "finish line" (in quotes
because Bike MS is a ride, not a race), I was near tears, overcome by my own
physical fatigue and with emotional empathy for others who take
on the challenges of MS on a daily basis.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">Following the first day's ride, we
were welcomed back with a barbeque dinner, an inspiring guest speaker, and live
music. Deb and I enjoyed our dinner while getting to know three
other people sitting at our table and learning their stories. We were
amazed by guest speaker Maureen Manley's story, who, when in her twenties,
was a world-class cyclist headed to the Olympics. She began developing
symptoms, starting with impaired vision, which forced her, albeit
reluctantly, to focus on her health rather than on her Olympic
dream. It turned out that Maureen was experiencing early
symptoms of Multiple Sclerosis. Despite this, Maureen never
gave up her cycling dream. She rides frequently and I was surprised to
learn that she had ridden that day's course with us!</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">For the second day, Deb and I had
planned to ride the 35-mile route. But after making a simple calculation
(64 miles + 35 miles = 99 miles, just one mile short of 100), Deb
convinced me to venture out on the 50-mile route instead. After a lengthy
ride on Day 1, the second day's ride felt more challenging, but it was well
worth it! The route headed south from Monmouth, through both barren and
forested land. I felt so grateful for Deb having encouraged me to
challenge myself with this longer route because, as I approached the
halfway point at Chip Ross Park, I was surrounded by a breathtakingly picturesque, tree-lined
landscape. Soon after entering this beautiful area, however, I was
also greeted with a 500-ft climb in elevation over a one-and-a-half mile
period. Pedaling up this hill exhausted me! At several points, I
wanted to stop and rest, but I convinced myself to persevere until I had
reached the top of the hill. After fifteen minutes of
I-could-walk-faster-than-this pedaling, I had finally reached the
top. Following a brief rest with my fellow exhausted
cyclists, all trying to catch our breaths, I headed down the opposite side
of the hill. For me, this was almost as tough as the ride up, as I
did my best to safely navigate the curvy road at speeds nearing 30 miles
per hour. The ride on Day 2 wound down with one last rest stop
along the beautiful Willamette River, followed by the final
stretch back into Monmouth. Even more difficult than
the steep hill at the middle of the ride, the last few miles proved a
serious mental challenge for me. To make it through,
I surrounded myself with constant positive talk for the entire
final seven miles of the route. As I reached the finish, I was
welcomed back by name over a loudspeaker and, again, nearly brought to
tears from exhaustion.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">In preparing for Bike MS, I grew to
learn quite a bit about myself and how to make long rides more enjoyable.
Of course, it is essential to stay hydrated with water and energized with food,
but I learned the specific intervals at which I need to make this happen
for myself, in order to have a successful ride. The wonderful
people at Bike MS put together a highly-organized and fully-stocked
event, accompanied by the kindest and most supportive
staff. I appreciated the very frequent rest stops that provided not only
water and electrolytes, but the most delicious
and nutritionally-balanced rest stop food I have ever had! Even
for a picky eater like me, there were several options for all types of
palates. (My favorite were the peanut butter and banana sandwiches
made on local whole-grain Dave's Killer Bread. Yum!)
Additionally, I consistently felt supported during the ride, from the
cheerleaders' warm welcomes at each rest stop, to the multiple
bike mechanics riding the route, helping those with flat tires and other
mishaps, to the support staff driving the route to make sure that no cyclist
was left behind or was without water. This year's Bike MS event in
Oregon involved nearly 600 cyclists, riding thousands of miles, raising
over $400,000 (and donations are still being accepted for this year's event until
the end of September), and was supported by over 250 volunteers--all to help
make a difference in the lives of those living with MS!<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">I feel lucky to have been personally
introduced to such a warm community with such an important goal--to STOP MS in its
tracks, RESTORE lost function, and END MS forever! The staff
and volunteers at the Oregon chapter of the NMSS have taken
great care of me, and I can only imagine how hard they work to help those who
are more directly affected by MS. When it was announced during the
evening program on Day 1 that sign ups were now available for next year's Bike
MS, Deb and I jumped at the chance.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">From February to August,
I participated in four different organized cycling events and, by far,
Bike MS has been my favorite!<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12pt; mso-fareast-font-family: "Times New Roman";">There are roughly one hundred
different Bike MS events of varying lengths all over the
country. And there is no excuse not to participate--there are
activities for all ability levels. Participants, including older children,
can ride their bikes along short or long routes. Or leave the bikes
aside and take part in the day's alternate events at the Bike MS village,
including yoga, swimming, and massage. Bike MS is sure to benefit you as
much as it benefits those with MS in your community! I hope to see
you in 2014 at Bike MS!<o:p></o:p></span></div>
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<o:p><span style="font-family: "calibri";"> </span></o:p></div>
Bean's Bloghttp://www.blogger.com/profile/07857605772598959516noreply@blogger.com0