tag:blogger.com,1999:blog-57137071419975043882024-03-12T23:52:18.872-04:00Carnival of MS BloggersCommunity of the Best MS Blogs!Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comBlogger164125tag:blogger.com,1999:blog-5713707141997504388.post-63796501672192860292016-06-06T23:12:00.004-04:002016-06-06T23:12:49.396-04:00Best MS Blogs<table align="center" style="width: 100%px;"><tbody>
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-71140711496529166012014-12-04T13:35:00.000-05:002014-12-05T02:01:36.510-05:00Carnival of MS Bloggers #163<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
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<span style="font-size: large;"><b><a href="http://msandbeyond.wordpress.com/2014/10/20/the-spiritual-side-of-multiple-sclerosis/" rel="nofollow" target="_blank">The Spiritual Side of Multiple Sclerosis</a></b></span></div>
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by <b>Bill Walker</b> at <b>MS and Beyond</b></div>
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When I think about myself as an individual in this lifetime experience, I always have to separate my reality, into two unique pieces which quite simply is a body and a soul. And strangely enough this is of great comfort to me when I start to think about my Multiple Sclerosis diagnosis. I understand that MS is a physical (body) ailment that has little to do with the soul part of my incarnation beyond being a lesson on learning compassion and love. I’m sure that sounds like something that should be significant to my spiritual growth overall, which it is, but I take great comfort in knowing that on the day I cease to exist in the physical plane is also the day that MS ceases to be a part of my continued existence, simply stated if I learn my lessons well enough, I can move beyond Multiple Sclerosis and never have deal with it again as far as I’m concerned.<br />
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Have you ever heard someone with MS or Parkinson’s or Cancer or any devastating disease say that it was the best thing that ever happened to them before? I can assure you that you didn’t hear it from me but I have come to understand what it is they are referring to when they make such a statement. After you can move yourself beyond the, why me phase, you start to see the world in a completely different manner. It’s like coming out of a deep all encompassing fog where you can see the world with eyes that no longer tune out a deeper compassion for the human experience, in short, you learn to love on a much more profound level then you ever thought you could. It makes almost everything that most people worry about in life seem incredibly insignificant from that point on. And if it took my getting Multiple Sclerosis to learn that, then I have to consider the possibility, that though I’m not really happy that’s what it took, perhaps it was worth the experience to achieve that overwhelming spiritual growth that is occurring within me.<br />
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And then it all starts to hit you just how petty most of what our race seems to think is important in this world. It’s not about amassing great wealth, or having the biggest house, or the power to influence other peoples lives just because you can. It’s ultimately about compassion, truth, and the willingness to help everyone else around you to find peace in their own existence.<br />
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And most of all, it’s about finding your own personal faith in who and what you are, and sharing that with everyone else!<br />
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<i>I’m dedicating this blog entry to a person that I didn’t know all that well, but I wish I had. When I met her she was in the advance stages of Progressive MS and little did I know at the time that this would be almost prophetic since it was twenty years before my own MS diagnosis. She was one of the kindest and gentlest spirits that I have ever met never once complaining about the hardships of her own life which were extensive by any normal standards that most of us experience. However, she left behind her spiritual compassion that will be shared and passed on by each of her four sons, John, Steve, Bill, and Dave. She brought the light of God into this world and it is only right that this light be shared by all!</i><br />
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<i>Camille Marie Kelly</i></div>
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<i>Born: 11/27/1932</i></div>
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<i>Passed: 1/10/1995</i></div>
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This concludes the 163rd edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on January 1, 2015. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 30, 2014.<br />
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-32458846060304953872014-11-23T10:00:00.000-05:002014-11-23T10:22:43.200-05:00Carnival of MS Bloggers #162<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
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<a href="http://www.motherhoodandmultiplesclerosis.com/2014/10/suffering-disappears-love-remains.html" rel="nofollow" target="_blank"><b><span style="font-size: large;">Suffering Disappears, Love Remains</span></b></a></div>
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by <b>Meagan</b> at <b>Multiple Sclerosis, Motherhood, and other Traumatic Experiences</b></div>
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Do you ever have days when you feel like it has all become too overwhelming?<br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-dUyz4YdCJlY/VE7m3VMfB7I/AAAAAAAAALo/3Jsi-hGGQ7A/s1600/Stan%2BBette%2BArmy.jpg" style="color: #76b0ed; text-decoration: none;"><img border="0" src="http://3.bp.blogspot.com/-dUyz4YdCJlY/VE7m3VMfB7I/AAAAAAAAALo/3Jsi-hGGQ7A/s280/Stan%2BBette%2BArmy.jpg" height="140" style="border: medium none; box-sizing: border-box; max-width: 100%; position: relative;" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px; text-align: center;">My grandparents, both in uniform during WWII</td></tr>
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My grandparents were a living example of heroism and true love despite devastating life circumstances. Have you seen those movies with an unbelievable love story, overcoming all odds?<br />
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This is a true story.<br />
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When I feel weak, I think of them. When I feel overwhelmed with my lot in life, I think of them. When I want to give up, cursing the universe for the bad hand I was dealt, I think of them.<br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-RcHhAekva_E/VE7jqDJrWUI/AAAAAAAAALc/16O8SKM3PUI/s1600/Bette%2BBob%2BHope.jpg" style="color: #76b0ed; text-decoration: none;"><img border="0" src="http://4.bp.blogspot.com/-RcHhAekva_E/VE7jqDJrWUI/AAAAAAAAALc/16O8SKM3PUI/s280/Bette%2BBob%2BHope.jpg" height="185" style="border: medium none; box-sizing: border-box; max-width: 100%; position: relative;" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px; text-align: center;">My grandmother with Bob Hope at the USO, 1940s, Hollywood, CA</td></tr>
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Their story began on a Southern California beach in the 1940s, just after World War II began. It was love at first sight, according to my grandparents. My grandfather describes my grandmother as "the most beautiful girl he had ever seen." From that moment on, they hung onto each other through it all, never giving up on this commitment. They both joined the military during the war, my grandmother serving as a WAC, my grandfather in the Army.<br />
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Soon after, they married and started a large family, with 3 girls and 4 boys. My mother was the oldest girl, and took on a great deal of responsibility for her younger siblings.<br />
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This beautiful love story began to take a turn.<br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-apgb1T5UpSU/VE6ED3kWU0I/AAAAAAAAAKA/lUYZ_YZeQJE/s1600/Stosh24.jpg" style="color: #76b0ed; text-decoration: none;"><img border="0" src="http://3.bp.blogspot.com/-apgb1T5UpSU/VE6ED3kWU0I/AAAAAAAAAKA/lUYZ_YZeQJE/s1600/Stosh24.jpg" height="200" style="border: medium none; box-sizing: border-box; max-width: 100%; position: relative;" width="169" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px; text-align: center;">My grandparents on their wedding day, 1945</td></tr>
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That beautiful image, that perfect wedding day....the meeting on the beach, the love that brought these two together. This is the foundation of a relationship that would truly stand the test of time, and the test of multiple sclerosis.<br />
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Sometimes, difficulties bring out the best in people. Sometimes it takes struggle to find out who we really are, and what we are truly capable of. My grandparents were about to experience that struggle first hand.<br />
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My grandmother began to experience new neurological symptoms, new emotional instability, and eventually full blown seizures. The health history of my grandmother is somewhat unclear, because this was occurring in the 1950s, before MRI, before a solid understanding of multiple sclerosis. After years of symptoms and hospitalizations, my grandmother was eventually diagnosed with MS. At this time, the disease was poorly understood, and no treatments whatsoever were available.<br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-xvTS_xOwTGE/VE6N8vD8d9I/AAAAAAAAAKQ/1bG9YThbqz0/s1600/Stosh16.jpg" style="color: #76b0ed; text-decoration: none;"><img border="0" src="http://4.bp.blogspot.com/-xvTS_xOwTGE/VE6N8vD8d9I/AAAAAAAAAKQ/1bG9YThbqz0/s280/Stosh16.jpg" height="137" style="border: medium none; box-sizing: border-box; max-width: 100%; position: relative;" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px; text-align: center;">My grandmother, mother, and aunt/uncles: 1960s</td></tr>
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Looking back, I believe that my grandmother may have had a very progressive form of MS, and combined with almost daily seizures, this led to a rapid decline. A wheelchair made it's appearance when my grandmother was in her 40s, and eventually she needed nursing care and was bedridden. When faced with the option to move my grandmother to a nursing home, my grandfather refused.<br />
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Here is the beautiful part of the story.<br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-16ekqvC2g0w/VE6SM0eD9rI/AAAAAAAAAKc/94Zf2BjtZLU/s1600/Stosh27.jpg" style="color: #76b0ed; text-decoration: none;"><img border="0" src="http://3.bp.blogspot.com/-16ekqvC2g0w/VE6SM0eD9rI/AAAAAAAAAKc/94Zf2BjtZLU/s1600/Stosh27.jpg" height="200" style="border: medium none; box-sizing: border-box; max-width: 100%; position: relative;" width="142" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px; text-align: center;">My grandmother with her caregiver</td></tr>
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My grandfather decorated a beautiful, sunny bedroom for his wife. He hired a caregiver who was a wonderful part of the family, present every day to care for the seven children and my grandmother while he worked. He must have been physically and mentally exhausted. He worked full time, served as husband, father of seven, caregiver, and breadwinner.<br />
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The family continued to grow, with myself and many other grandchildren making an appearance. Family Christmases, weddings, and other celebrations always included my grandmother. The love between my grandparents could be felt strongly if you were near them, and for many years, the love grew and the care continued. Eventually, however, my grandmother lost her battle with MS.</div>
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My grandfather lived on for another 15 years, gardening, visiting with many grandchildren, and enjoying holidays with the family. He would always say that he was going to see his wife again someday. He was waiting for that day.</div>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-rtmxS2r2ggE/VE6ZvT4jYfI/AAAAAAAAAK0/O09ylQd0xAg/s1600/Stan%2Band%2BBette.jpg" style="color: #76b0ed; text-decoration: none;"><img border="0" src="http://4.bp.blogspot.com/-rtmxS2r2ggE/VE6ZvT4jYfI/AAAAAAAAAK0/O09ylQd0xAg/s280/Stan%2Band%2BBette.jpg" height="141" style="border: medium none; box-sizing: border-box; max-width: 100%; position: relative;" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px; text-align: center;">My grandparents...1980s</td></tr>
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The strength of the human spirit is incredible, isn't it? The ability of a human being to sustain the daily grind, work, children, marriage, illness, and even death. The depth of our strength cannot truly be known until we face challenges like MS. We must undergo many changes in life, adapt, overcome, and go on. </div>
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On their grave is the quote "Suffering Disappears, Love Remains."</div>
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When you think about it, isn't that the truth? Our suffering isn't permanent. It isn't forever. But do you know what<span class="Apple-converted-space"> </span><i>is</i>?<span class="Apple-converted-space"> </span><i>Love.</i></div>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-gZ0Sg1MIS_0/VE7hxzSIjaI/AAAAAAAAALQ/eEfTe2o3oSw/s1600/Bette%2BLouie.jpg" style="clear: right; color: #76b0ed; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-decoration: none;"><img border="0" src="http://1.bp.blogspot.com/-gZ0Sg1MIS_0/VE7hxzSIjaI/AAAAAAAAALQ/eEfTe2o3oSw/s1600/Bette%2BLouie.jpg" height="200" style="border: medium none; box-sizing: border-box; max-width: 100%; position: relative;" width="162" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My grandmother with Louis Armstrong, 1950s</td></tr>
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With my own diagnosis, I have seen my grandparent's story as a source of inspiration. I have a large family of my own, with six children depending on my husband and myself. I look at my grandparent's story and realize that anything is possible. There is no "I can't." I<span class="Apple-converted-space"> </span><i>can<span class="Apple-converted-space"> </span></i>and I<span class="Apple-converted-space"> </span><i>will. </i><br />
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When you feel that life has handed you a lousy deal, keep in mind: You are strong and capable. Your strength comes from a place deep within, and you won't believe how strong you can be when you have to. Lean on those around you when you need to.<br />
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MS certainly presents a great challenge to each of us, but I am so grateful for the many new treatments available, and the ongoing research. We live in a time of hope and promise, as far as MS goes. We are fortunate.</div>
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Despite everything we endure in life, it is still "A Wonderful World," isn't it?<br />
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<b><span style="font-size: large;"><a href="http://www.brassandivory.org/2014/11/please-join-me-at-iconquerms.html" rel="nofollow" target="_blank">Please Join Me at iConquerMS</a><span style="background-color: #fdfefa; color: #d57629; font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif;">™</span></span></b></div>
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by <b>Lisa Emrich</b> at <b>Brass and Ivory</b></div>
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<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/x6PgdqEfDCE" width="475"></iframe><br /></div>
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This concludes the 162nd edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on December 4, 2014. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 2, 2014.<br />
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<br />Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-55518547410089731822014-11-06T13:34:00.000-05:002014-11-07T15:41:10.313-05:00Carnival of MS Bloggers #161<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
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<b><span style="font-size: large;">Creating a World of My Own</span></b></div>
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by <b>Melissa L. Cook</b> of <a href="http://mssymptoms.me/" rel="nofollow" target="_blank"><b>MSsymptoms.me</b></a></div>
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Papers stacked high, email flags a mile long, a budget to reconstruct on my desk, a teacher in for an evaluation, and it was already 2:30 pm - I would be home late again tonight. Double-timing as I navigated the halls of the school touching base with each of the teachers to see if they needed anything - support, supplies, a travel request. On to instruct an after school teacher inservice and then I would hightail it to a conference call on a new state report. I loved my job. My career as a school district administrator was, simply put, awesome. Little did I know my driven world would abruptly skid to a crawl, robbing me of my oomph and leaving me alone with no more tasks to complete than to peel myself out of bed, slip on clothes and cook dinner - tasks proving difficult at best on some days. Multiple sclerosis had taken an ugly turn for me for a period in my life.<br />
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Initially I was too ill to be aware of my devastating launch into isolation. Loneliness was a few months off. Fearing the worst was about to befall me, I planned my final arrangements and put my affairs in order. Then I waited. Nothing. Waited some more. The shock of being alone hit me like a ton of bricks. Overload at the office made it difficult to sustain meaningful relationships in the after-hours clearly evident at this point in my life. I was alone now during the day; my life would never be the same.<br />
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A few years later, I would write a blog post called, <a href="http://www.mssymptoms.me/?p=184" rel="nofollow" target="_blank">“Disability is Not a Bundle of Sick Days”</a> with the conclusion, “It is as if I have spent the past 31 months out on sick days. Disability isn’t a sick day, it is life. It is about time I realized it and start living again.” I hid in my home for two and a half years. I was sick. I worried the people of my small town would question why I wasn’t working if I could mosey into the post office or store. Then one day I ventured out with a camera in hand to photograph the fall colors and was welcomed with open arms by my neighbors and friends whom had wondered what happened to me.<br />
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<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="http://1.bp.blogspot.com/-eRSwrBGL3rw/R9a13VZREqI/AAAAAAAAAM4/qIaai7XTrsI/s1600/Johannes%2BVermeer%2C%2BA%2BLady%2BWriting.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-eRSwrBGL3rw/R9a13VZREqI/AAAAAAAAAM4/qIaai7XTrsI/s1600/Johannes%2BVermeer%2C%2BA%2BLady%2BWriting.jpg" height="320" width="280" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Johannes Vermeer, A Lady Writing</td></tr>
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Creating a world of my own came from the freedom gained in throwing out the “sick day” mentality. Multiple sclerosis is a day-by-day illness meaning there are times I feel normal and can do things I used to. The first order of business was making new friends. Second, purpose was reintroduced into my life when I began blogging about my MS story and the latest research on www.MSsymptoms.me. Third, my desire to help others led me to become a first responder. People with disabilities can be assets to the EMS. Then, I became a board member for the local domestic violence and rape crisis center, putting my administrative training and education to use. Now I am polishing up a children’s story I have had on my mind for years and have a collection of short stories on living in Alaska’s bush country to revise.<br />
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Multiple sclerosis still hangs around my doorstep making an appearance periodically. However, I balance my new world in a way I never could with the demands of being employed. Resting as I need and remembering “all things in moderation” allows me to live an awe-inspiring life without the career I once loved.<br />
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The old saying, “When one door closes, another one opens” has been so true for me. My career goal of becoming a superintendent of schools with a Ph.D. was not realized. However, my dream of writing is taking shape. In addition, I find time to play with my grandchildren, quilt, bead, take photographs, and I want to learn how to paint with watercolors. Creating my own world becomes more exciting by the month. Yes, I still spend most of my days alone but I am not lonely; I am happy again. And, at the end of the day my best friend comes home to spend the evenings and weekends with me. I love you, Elgin! Thank-you for keeping me going.<br />
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This concludes the 161st edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on December 4, 2014. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 2, 2014.<br />
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-6723886846481318982014-10-02T13:32:00.000-04:002014-11-07T15:53:54.842-05:00Carnival of MS Bloggers #160<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
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<b><span style="font-size: large;"><a href="http://www.brassandivory.org/2014/10/i-hate-good-enough.html" target="_blank">I Hate Good Enough</a></span></b></div>
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by <b>Lisa Emrich</b></div>
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Growing up, I learned several things: take care and pride in the things that you do, pay attention to details, follow established or recommended procedures, but be creative and flexible enough to find more efficient and effective ways of accomplishing tasks. In other words, don’t expect things to just happen on their own and be willing to improve upon past efforts.<br />
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Each of us have responsibilities and must take an active role in the world around us. No matter what that role is, it’s nice when everybody is able to do their best and helps to make things work well together. But sometimes, aiming for “your best” can lead to a distraction called perfectionism.<br />
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I have to admit that I’m somewhat of a perfectionist, in an all or nothing sort of way. It’s always been difficult for me to accept something as being satisfactory, good enough, or almost right. And when I do make a conscious decision to simply do what needs to be done, and no more, I find it challenging when others around me may want to go back to the planning stages and do the work over again. Argh, once I’ve let something go, physically and emotionally, I don’t want to revisit it.<br />
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But one thing which I’ve had a really hard time learning to accept is the concept of good enough. When living with chronic disease, sometimes you don’t have the luxury of spending tons of energy perfecting every little detail. Sometimes you just have to simply ensure that things are okay, safe, or clean.<br />
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In my previous life, when I used to live alone, I was entirely responsible for everything that happened at home. If the floor needed to be vacuumed, I did it. I even moved light furniture so that I could run the vacuum wand along the floorboards to remove the cat-fur dust bunnies before they grew to adulthood. A bit of prevention helped to keep things from getting out of control.<br />
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If the dishes needed to be washed, I did them by hand and scrubbed every metal surface till it shined. If the cat became unsatisfied with the condition of his litter box, he was not shy about letting me know by doing his business on the floor of the bathroom. In that case, I needed to focus more on the prevention stage. Although I was swamped with graduate classes, working two library jobs, and performing in at least four ensembles, I was able to stay on top of routine household chores most of the time.<br />
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<a href="http://4.bp.blogspot.com/-Wdp-6m3I0P4/VF0xLz0emTI/AAAAAAAADKs/4G7E4yCGTkY/s1600/LittleGuys_SniffingLilacs.tiff" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://4.bp.blogspot.com/-Wdp-6m3I0P4/VF0xLz0emTI/AAAAAAAADKs/4G7E4yCGTkY/s1600/LittleGuys_SniffingLilacs.tiff" height="239" width="320" /></a></div>
Now that there are three of us in the house, in addition to our three loving fur babies, and I do not need to do everything all on my own, it seems that nothing is quite as clean as it used to be. Items are often not where I left them and there’s always a pile of dishes to be cleaned.<br />
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Face it, I no longer live alone, nor do I have complete control over my surroundings which I’ve come to accept. But that’s not all, I also don’t live alone in more ways than one. My roommates now include multiple sclerosis and rheumatoid arthritis.<br />
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These roommates, MS and RA, are messy slobs. They don’t do their own laundry, nor do they sleep when I’m tired or get out of the way when I’m busy working. But these roommates are doing their darndest to teach me patience, to teach me how to accept “good enough” when it really is enough, and to learn how to appreciate imperfections. It makes me appreciate a freshly washed countertop, or a pile of clean laundry which I didn’t have to fold myself, all the more.<br />
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What types of things have you learned, or are learning, to accept after living with chronic illness for any period of time? Please share your stories in the comments section below.<br />
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This concludes the 160th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on November 6, 2014. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 4, 2014.<br />
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-81637302089113531212014-09-04T13:31:00.000-04:002014-11-07T12:22:53.506-05:00Carnival of MS Bloggers #159<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
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<a href="http://mirandasmsblog.com/2014/07/21/gut-health/" rel="nofollow" target="_blank"><b><span style="font-size: large;">Gut health</span></b></a></div>
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from <b>MirandasMSBlog</b></div>
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Bacteria and Digestion<br />
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I quite often get asked about bloating. But did you know that you don’t have to have digestive symptoms to be suffering from ‘dysbiosis’ or wrong bacteria in the gut? It might be easy to think of this as something that’s just a minor inconvenience. However – gut problems are not just miserable & uncomfortable, they can also possibly play a role in auto-immune diseases like MS. In fact Hippocrates, the ‘Father of modern medicine’ is quoted as saying that ‘all disease begins in the gut’.<br />
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If the health of the gut breaks down, undigested food molecules can pass into the bloodstream. This is known as ‘leaky gut’. These undigested food molecules can be interpreted by the body as ‘bad guys’, and activate an immune reaction, causing a food intolerance. According to the theory of ‘molecular mimicry’, the confused immune system can then mistake other molecules, of the body’s own tissues, which are similar to these undigested food molecules, to also be ‘bad guys’ or pathogens, and launch an immune response to its own tissues, setting up an auto-immune disease.<br />
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So let’s take a look at this one aspect of gut health; bacteria, & how it affects us. The gut is basically a long tube, that travels from the mouth to the anus, with many shapes & sizes along the way, to accommodate the different stages of digestion! I’ve discussed constipation, diet and stool health, and the link between auto-immune disease and food intolerances before in this blog , but today I’m thinking about the tiny beings who live with us, lovingly help to keep us healthy but also depend on us too for their existence – Bacteria! bacteria<br />
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<a href="http://i0.wp.com/www.painfreepotential.co.uk/wp-content/uploads/2014/05/bacteria.jpg" sl-processed="1" style="border: 0px; clear: left; color: #1982d1; float: left; font-family: inherit; font-style: inherit; font-weight: inherit; margin-bottom: 1em; margin-right: 1em; margin-top: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;"><img alt="bacteria" class="alignleft size-full wp-image-890" src="http://i0.wp.com/www.painfreepotential.co.uk/wp-content/uploads/2014/05/bacteria.jpg?zoom=2&resize=200%2C200" height="200" scale="2" src-orig="http://i0.wp.com/www.painfreepotential.co.uk/wp-content/uploads/2014/05/bacteria.jpg?resize=200%2C200" style="border: 1px solid rgb(221, 221, 221); display: inline; float: left; height: auto; margin-bottom: 1.625em; margin-right: 1.625em; margin-top: 0.4em; max-width: 97.5%; padding: 6px; width: auto;" width="200" /></a>From the 1600s, and the invention of the first microscope, we have known about the existence of our internal bacteria, but up until quite recently, the focus for medicine has been more about the ‘war on germs’, and the eradication of infectious disease. We now understand that our gut is home to approximately 100 trillion micro-organisms. Did you know that: Bacterial cells outnumber our human cells to the extent that you could say that we are actually only 10% human, and 90% bacterial? Or that three pounds of your body weight is bacteria?<br />
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75% of our immune system is comprised of intestinal bacteria – and it also helps to regulate metabolism, digestion and the absorption of nutrients from food. The health of our gut depends on this intestinal ‘flora’ being in balance, and gut health is critical to overall health, with poor gut health implicated in a wide range of diseases including diabetes, obesity, rheumatoid arthritis and other auto-immune diseases, autism spectrum disorder and even depression. So what can disrupt the healthy bacteria in the gut? Top of the list is<br />
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<ul>
<li>Antibiotics – life saving but also seriously disrupt the ‘biome’</li>
</ul>
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Amongst others,<br />
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<ul>
<li>Steroids and other medications like birth control and non- steroidal anti-inflammatories</li>
<li>Diets high in refined carbohydrates, sugar and processed foods</li>
<li>Diets low in ‘fermentable fibres’ – food for the good bacteria</li>
<li>Chronic stress and Chronic infections</li>
</ul>
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What can we do to help repopulate the gut with healthy bacteria? And what to do if suffering from ‘digestive discomfort!’?<br />
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<ul>
<li>Eat plenty of fermentable fibers (sweet potato, Jerusalem artichoke, yams, dandelion greens, leeks, onion, garlic, or bananas) or take a pro-biotic ( good bacteria) capsule that includes Pre-biotics ( food for the good bacteria)</li>
<li>Eat fermented foods like kefir, live yogurt,( be aware these 2 are dairy based), kombucha, sauerkraut, kim chi, – traditionally most societies do, but we’ve forgotten to!</li>
<li>and/or take a high-quality, MULTI-STRAIN PRO-BIOTIC ( good bacteria) capsule daily – Bio-Kult is a good one, many others too</li>
<li>Keep your diet as close to whole foods as possible</li>
<li>Learn how to manage stress healthily</li>
</ul>
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Taking regular probiotics helps to re-establish the strength of our gut and digestion, reducing the incidence of food intolerances, and allowing the body to free up more of its energy for healing painful conditions. It has also been found to help prevent recurrent infections like urine infections, and increase our ability to fight off the bad bacteria. The cheapest dairy-free way to get good bacteria into your diet is by making your own sauerkraut – It’s super easy to make – just get a head of organic cabbage, chop it up, punch it in a bowl, sprinkle salt on it, let it sit for half an hour, then put it in jars with a bit of salt water and let it sit on your kichen top for a week. There’s loads of instructions on the internet, but that’s about the size of it. Then use it like pickle. Til next time :)<br />
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<br />
This concludes the 159th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on October 2, 2014. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 20, 2014.<br />
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-11375063481573131592014-08-07T13:16:00.000-04:002014-11-05T13:28:26.130-05:00Carnival of MS Bloggers #158<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
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<span style="font-size: large;"><b><a href="http://danandjenniferdigmann.com/?p=3304" rel="nofollow" target="_blank">Going Under the Knife</a></b></span></div>
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by <b>Jennifer Digmann</b></div>
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When Cooper alluded in his<span class="Apple-converted-space"> </span><a href="http://danandjenniferdigmann.com/?p=3292" rel="nofollow" style="color: #3b3b3b; text-decoration: none;" target="_blank">last post</a><span class="Apple-converted-space"> </span>that neither Dan nor I have been writing for our blog, I felt the need to explain what I’ve been doing.</div>
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It was three weeks ago Wednesday, July 30, that I had Gamma-Knife Radiosurgery.<br />
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This was the aggressive measure I needed to take in hopes it could control my Trigeminal Neuralgia (TN) and potentially open the doors for an equally aggressive treatment of my<span class="Apple-converted-space"> </span><a href="http://www.healthline.com/health/multiple-sclerosis/types-of-ms#Progressive-Relapsing8" rel="nofollow" style="color: #3b3b3b; text-decoration: none;" target="_blank">secondary-progressive Multiple Sclerosis.</a><br />
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For nearly four years I’ve battled TN, a wicked condition related to my MS. While only a small percentage of people with MS have TN, those who get this relentlessly painful irritation of the trigeminal nerve experience it in a very big way.<br />
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Almost every day and night for the past 48 months I’ve lived with the realities that I couldn’t expect to brush my teeth without pain, eat sweets without wincing, or sleep soundly without the being awakened by a violent sensation of electricity running through my right cheek and molars.<br />
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Through trials and error and countless calls to my neurologist at University of Michigan Hospital, we found medication – Tegretol and Tramadol – to somewhat control the nerve pain. It in no way was a long-term solution. We knew that, but another reality forced our hand to take a more urgent course of action: The TN medication was impacting my white blood cell count that it was preventing me from moving forward with a new MS medication, Rituximab.<br />
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After lots of research and doctor consultations, we concluded Gamma-Knife was my best bet.<br />
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<a href="http://www.healthline.com/" rel="nofollow" style="color: #3b3b3b; text-decoration: none;" target="_blank">Healthline.com</a><span class="Apple-converted-space"> </span>explains that Gamma-Knife uses a targeted approach for delivery of radiation that destroys the trigeminal nerve. Also, the procedure is gaining in popularity because of its precision, effectiveness and is considered safer than other surgical treatments.<br />
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It was on July 9 that I underwent this treatment for my<span class="Apple-converted-space"> </span><a href="http://www.healthline.com/health-slideshow/trigeminal-neuralgia" rel="nofollow" style="color: #3b3b3b; text-decoration: none;" target="_blank">Trigeminal Neuralgia</a><b>.</b><span class="Apple-converted-space"> </span>To increase understanding of this advanced procedure that has the potential to help others dealing with conditions like TN, here is a behind-the-scenes look (some of the pictures are a little oogy!) into my Gamma-Knife procedure at<span class="Apple-converted-space"> </span><a href="https://www.midmichigan.org/about/our-affiliates/Hospitals/Midland/" rel="nofollow" style="color: #3b3b3b; text-decoration: none;" target="_blank">MidMichigan Medical Center in Midland.</a><br />
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<div class="wp-caption aligncenter" id="attachment_3310" style="-webkit-text-stroke-width: 0px; background-color: #f3f3f3; border-bottom-left-radius: 3px; border-bottom-right-radius: 3px; border-top-left-radius: 3px; border-top-right-radius: 3px; border: 1px solid rgb(221, 221, 221); color: #5e5a5e; display: block; font-family: Verdana, Arial, sans-serif; font-size: 12px; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: 18px; margin: 10px auto; orphans: auto; padding-top: 4px; text-align: center; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; width: 204px; word-spacing: 0px;">
<a href="http://danandjenniferdigmann.com/wp-content/uploads/2014/07/Going-in.jpg" style="color: #3b3b3b; text-decoration: none;"><img alt="I was excitedly nervous as I rolled into the Gamma-Knife department." class="size-medium wp-image-3310" src="http://danandjenniferdigmann.com/wp-content/uploads/2014/07/Going-in-194x300.jpg" height="300" style="border: 0px none; margin: 0px; padding: 0px;" width="194" /></a><br />
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I was excitedly nervous as I rolled into the Gamma-Knife department.</div>
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<div class="wp-caption aligncenter" id="attachment_3311" style="-webkit-text-stroke-width: 0px; background-color: #f3f3f3; border-bottom-left-radius: 3px; border-bottom-right-radius: 3px; border-top-left-radius: 3px; border-top-right-radius: 3px; border: 1px solid rgb(221, 221, 221); color: #5e5a5e; display: block; font-family: Verdana, Arial, sans-serif; font-size: 12px; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: 18px; margin: 10px auto; orphans: auto; padding-top: 4px; text-align: center; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; width: 235px; word-spacing: 0px;">
<a href="http://danandjenniferdigmann.com/wp-content/uploads/2014/07/Front-shot.jpg" style="color: #3b3b3b; text-decoration: none;"><img alt="Dr. Mark Jones and his awesome staff mounted a frame on my head to ensure it held still so they had the utmost precision when they used radiation to knock out my trigeminal nerve." class="size-medium wp-image-3311" src="http://danandjenniferdigmann.com/wp-content/uploads/2014/07/Front-shot-225x300.jpg" height="300" style="border: 0px none; margin: 0px; padding: 0px;" width="225" /></a><br />
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Dr. Mark Jones and his awesome staff mounted a frame on my head to ensure it held still so they had the utmost precision when they used radiation to knock out my trigeminal nerve.</div>
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<div class="wp-caption aligncenter" id="attachment_3307" style="-webkit-text-stroke-width: 0px; background-color: #f3f3f3; border-bottom-left-radius: 3px; border-bottom-right-radius: 3px; border-top-left-radius: 3px; border-top-right-radius: 3px; border: 1px solid rgb(221, 221, 221); color: #5e5a5e; display: block; font-family: Verdana, Arial, sans-serif; font-size: 12px; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: 18px; margin: 10px auto; orphans: auto; padding-top: 4px; text-align: center; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; width: 235px; word-spacing: 0px;">
<a href="http://danandjenniferdigmann.com/wp-content/uploads/2014/07/side-view.jpg" style="color: #3b3b3b; text-decoration: none;"><img alt="See? Mounted on my head ... with screws! Yes, it was very painful, but Nurse Tammy held my hand to help me through it. Interesting to note: the metal screws did not leave any marks or scars." class="size-medium wp-image-3307" src="http://danandjenniferdigmann.com/wp-content/uploads/2014/07/side-view-225x300.jpg" height="300" style="border: 0px none; margin: 0px; padding: 0px;" width="225" /></a><br />
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See? Mounted on my head … with screws! Yes, it was very painful, but Nurse Tammy held my hand to help me through it. Interesting to note: the metal screws did not leave any marks or scars.</div>
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<div class="wp-caption aligncenter" id="attachment_3308" style="-webkit-text-stroke-width: 0px; background-color: #f3f3f3; border-bottom-left-radius: 3px; border-bottom-right-radius: 3px; border-top-left-radius: 3px; border-top-right-radius: 3px; border: 1px solid rgb(221, 221, 221); color: #5e5a5e; display: block; font-family: Verdana, Arial, sans-serif; font-size: 12px; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: 18px; margin: 10px auto; orphans: auto; padding-top: 4px; text-align: center; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; width: 235px; word-spacing: 0px;">
<a href="http://danandjenniferdigmann.com/wp-content/uploads/2014/07/TV.jpg" style="color: #3b3b3b; text-decoration: none;"><img alt="Dan got to watch the entire procedure from the patient room in the medical center. Talk about reality TV!" class="size-medium wp-image-3308" src="http://danandjenniferdigmann.com/wp-content/uploads/2014/07/TV-225x300.jpg" height="300" style="border: 0px none; margin: 0px; padding: 0px;" width="225" /></a><br />
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Dan got to watch the entire procedure from the patient room in the medical center. Talk about reality TV!</div>
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<div class="wp-caption aligncenter" id="attachment_3309" style="-webkit-text-stroke-width: 0px; background-color: #f3f3f3; border-bottom-left-radius: 3px; border-bottom-right-radius: 3px; border-top-left-radius: 3px; border-top-right-radius: 3px; border: 1px solid rgb(221, 221, 221); color: #5e5a5e; display: block; font-family: Verdana, Arial, sans-serif; font-size: 12px; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: 18px; margin: 10px auto; orphans: auto; padding-top: 4px; text-align: center; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; width: 235px; word-spacing: 0px;">
<a href="http://danandjenniferdigmann.com/wp-content/uploads/2014/07/all-done.jpg" style="color: #3b3b3b; text-decoration: none;"><img alt="It's over! And hopefully so is my Trigeminal Neuralgia. Doctors warned me it could take between four to six weeks for results. Either way, I'm halfway there." class="size-medium wp-image-3309" src="http://danandjenniferdigmann.com/wp-content/uploads/2014/07/all-done-225x300.jpg" height="300" style="border: 0px none; margin: 0px; padding: 0px;" width="225" /></a><br />
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It’s over! And hopefully so is my Trigeminal Neuralgia. Doctors warned me it could take between four to six weeks for results. Either way, I’m halfway there.</div>
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<div class="wp-caption aligncenter" id="attachment_3317" style="-webkit-text-stroke-width: 0px; background-color: #f3f3f3; border-bottom-left-radius: 3px; border-bottom-right-radius: 3px; border-top-left-radius: 3px; border-top-right-radius: 3px; border: 1px solid rgb(221, 221, 221); color: #5e5a5e; display: block; font-family: Verdana, Arial, sans-serif; font-size: 12px; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: 18px; margin: 10px auto; orphans: auto; padding-top: 4px; text-align: center; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; width: 310px; word-spacing: 0px;">
<a href="http://danandjenniferdigmann.com/wp-content/uploads/2014/07/train.jpg" style="color: #3b3b3b; text-decoration: none;"><img alt="Are there any risks or side effects to Gamma-Knife? Potentially, but this photo from our fourth-row seats at the Train concert the day after the procedure says I didn't have any :-) " class="size-medium wp-image-3317" src="http://danandjenniferdigmann.com/wp-content/uploads/2014/07/train-300x225.jpg" height="225" style="border: 0px none; margin: 0px; padding: 0px;" width="300" /></a><br />
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Are there any risks or side effects to Gamma-Knife? Potentially, but this photo from our fourth-row seats at the Train concert the night after the procedure says I didn’t have any :-)</div>
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Anyone who knows me knows that I’m kind of superstitious. I don’t like to talk about things before they happen for fear I may jinx an otherwise good outcome. I didn’t tell many people about the procedure before it happened for that exact reason. And even now, I don’t want to jinx a seemingly good result.<br />
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My pain is not completely gone and I still am taking Tegretol to manage it, but I am starting to feel like me again, sleeping through the night and brushing my teeth … nearly pain free.<br />
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This concludes the 158th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on September 4, 2014. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 2, 2014.<br />
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-9981743740956908832014-06-05T10:28:00.000-04:002014-06-18T14:27:09.038-04:00Carnival of MS Bloggers #156<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
<br />
<div style="text-align: center;">
<span style="font-size: large;"><a href="http://mamasissykatspeaks.com/2014/04/13/ouchies-on-the-inside/" rel="nofollow" target="_blank"><b>“Ouchies on the Inside” and other lies I tell my boys</b></a></span></div>
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by <b>Jamia</b> at <b>MS is a Mother...</b></div>
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As mothers, I think that we are given the permission from the Universe to lie to our kids. And not really big lies, but little lies that help smooth out tough conversations.<br />
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Lies like, “This is going to hurt me more than it will hurt you” as we rip band-aids off of “boo-boos”. Little lies like, “We will be there before you know it…” knowing full well that the car ride to the amusement park is at least an hour away and there is a traffic jam. <br />
<br />
So as I continue to embark on my motherhood journey, I too, have started telling these same little lies to smooth out difficult questions that my four year old is fond of asking me.<br />
<br />
But one question that caught me off guard that I didn’t have a little lie to tell was this: “Mommy why do you get tired all the time and why do you walk funny sometimes?”<br />
<br />
The dreaded questions that I was hoping not to have to answer for at least another year were already being asked! As a mother living with relapsing multiple sclerosis, I try very hard to mask those tougher days by announcing to the family that “Today, Mommy is moving like a robot “which means that I will be plodding around the house shifting my weight from side-to-side because my legs are agitated by the effects of Multiple Sclerosis leaving lesions on my spinal cord that at times will affect my gait and balance. Being “Mommy robot” sounds a bit more fun and allows us to keep the situation light. Sometime I do walk funny and my gait is off do to my MS, and becoming a “Mommy Robot” puts things into perspective.<br />
<br />
But on this day I decided that not every MS manifestation I could have could be attributed to “Mommy Robot”. So as he waits for an answer, I get the perfect way to explain multiple sclerosis in a way that my two and four year old will understand.<br />
<br />
So I casually say, “Jacks when you fall and hurt yourself, what do you say?” Jacks looks at me a bit annoyed because this is NOT the answer to his question. But being a good little boy he says, “Ouchy.”<br />
<br />
“Good” I say. “And what if you fell and hurt yourself all over, what would you say then?”<br />
<br />
Jacks cocks his head to one side and says very confidently, “Ouchies, Mommy. I would have “ouchies” all over the place!” He spreads his arms as far apart as he can.<br />
<br />
So I take a breath and continue, “So guess what Jacks? Mommy has “ouchies” too.” I say matter-of –factly as he runs to me looking all over my arms and legs.<br />
<br />
“Where mommy? Where are your ouchies? I don’t see them?” His big brown eyes filled with a bit of concern that almost makes me want to cry. But I keep going.<br />
<br />
“Well Mommy has “ouchies on the inside” of my body where you and I can’t see them. That is why I get tired and walk funny sometimes. Mommy’s “ouchies on the inside” are “acting up.”<br />
<br />
I stop talking and look at him. He sits silently and I figure that this was a bit too abstract and maybe I should have kept up with the “Mommy robot” story.<br />
<br />
A little lie to smooth out a difficult conversation.<br />
<br />
So then this is when I knew that as much as we mothers like to shield our children from uncertain truths, they show us that they can handle it. Jacks looks up at me and starts planting kisses all over my face and arms and legs. I start laughing at this sudden display of affection. And before I knew it my little Dylan has joined the party.<br />
<br />
“Jacks, what are you guys doing? “ I say as I laugh because their kisses are tickling me. And the two of them have now knocked me over and we are all on the floor.<br />
<br />
“Kissing all of your “ouchies” away, Mommy. Feel better now?” he asks as Dylan echoes my answer with some of his indiscernible toddler ramblings.<br />
<br />
And at that moment I did feel better. Much better. <br />
<br />
Telling the truth can also smooth out difficult conversations. Lesson learned. Another stamp in my passport: MOTHERHOOD.<br />
<br />
<br />
This concludes the 156th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on July 3, 2014. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 1, 2014.<br />
<br />
<div style="text-align: left;">
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-9917862111624193362014-05-01T10:52:00.000-04:002014-05-01T10:52:01.485-04:00Carnival of MS Bloggers #155<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
<br />
<div style="text-align: center;">
<span style="font-size: large;"><b><a href="http://www.beasleymsjourney.blogspot.com/2014/03/im-sorry.html" rel="nofollow" target="_blank">I'm Sorry...</a></b></span></div>
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by <b>Lori</b> at <b>A Girl from MS and A Boy with MS</b> </div>
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I'm sorry is a phrase that is either really easy to say or really hard to say. Sometimes it is used lightly, and sometimes it is used in some pretty intense situations. In marriage and really in life in general, the art of saying I'm sorry and what it means is actually really complex.<br />
<br />
The first words Josh said to me after his diagnosis were "I'm Sorry." I am pretty sure I looked at Josh like he was an idiot. Why was he apologizing? Who says they are sorry for being sick? Are you kidding me? Being diagnosed with MS is something that is totally out of a person's control. Thinking about it now, I'm sorry is a little bit ironic. The things I really need Josh to say I'm sorry for are things like...<br />
<ul>
<li>Sorry for leaving the toilet seat up, and the fact that you fall in the toilet at least once a week as a result of this.</li>
<li>Sorry for never unpacking my bags after business trips.</li>
<li>Sorry for falling asleep with a glass of red wine in my hand and waking up startled resulting in me drenching you with red wine at 3 in the morning. (True Story... Don't you feel sorry for me?)</li>
<li>Sorry for being grouchy when I wake up.</li>
<li>Sorry for leaving my work stuff scattered on the table.</li>
<li>Sorry for leaving empty glasses on the nightstand. </li>
</ul>
Even after reading this list, the things I want him to say he is sorry for are pretty pathetic. They are such minor things in life. AND truthfully, I might miss some of these things if he ever quit doing them. Although, he is free to stop doing these things just so I can test out what it is like. :)<br />
<br />
On the MS front...<br />
<br />
The eye washout has not completely gone away. Josh needs a steroid for his eyes to knock out the inflammation. Dr. Emily called in IV Infusion that can be done at home. Sounds dramatic, but it really isn't-just more of an inconvenience. Josh does an incredible amount of paperwork for his job. Really, I may never understand the amount of paperwork that he does. The IV is being done at home which works out really well for him so he doesn't have to stop work. Just another perk of having a home office. He has to do 3 consecutive days of the steroid. We are hoping to get them started today and finish on Saturday. I laughed and told him maybe he will have a cute little nurse come out to set it up:). It amazes me how far technology and medicine has come. The fact that he can do this from home and it not have an impact on his work is truly amazing.<br />
<br />
Back to the "I'm Sorry's"...<br />
<br />
Our wedding was FUN. Like, so fun I didn't want to leave. In fact, when we left the reception the first time, no one was outside to see us leave. We had to do a redo and tell the band to stop playing music so everyone would come outside to see us hop in the limo to start our happily ever after. Our friends and family celebrated (maybe celebrated a little too much:), but the main part of our wedding was our vows. When I took those vows, I signed up for MS. I signed on the dotted line when I signed our marriage certificate. Did I know it at the time? No. When you are young and in love, you feel invincible. All you can imagine are picket fences, babies, puppies, and rainbows. (At least as a girl I imagined this. I would be interested to see what Josh imagined:) Would I do it all again and sign up for MS? Yep. And guess what? I. AM. NOT. SORRY. And guess what else? I will NEVER be sorry.<br />
<br />
<div style="text-align: center;">
<span style="font-size: large;"><b><a href="http://time4writing.blogspot.com/2014/03/marathon-i-have-been-runnerin-my.html" rel="nofollow" target="_blank">Marathon</a></b></span></div>
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by <b>Lyla</b> at <b>Dear Diary</b></div>
<br />
I have been a runner in my lifetime. Some days I still feel like one, but most of the time I am happy to have the memorable experience of sustained motion. In 1999 a friend talked me into doing a "fun run" with her. She had just had her third child and wanted to get back in shape. She had been very involved in track during her college days and was really quite good, and fast.<br />
<br />
I said yes, and over the next five years I ran in several events including four marathons and three triathlons. In 2004 I had a training accident which inadvertently led to an MRI revealing evidence of demyelinating disease. My next marathon had begun. It took another six years of head scratching before the diagnosis came. Oddly welcome. Nice to know the reason why, right?<br />
<br />
<a href="http://1.bp.blogspot.com/-F9Q6h5NWCKw/U2JezuIllwI/AAAAAAAADDQ/fQZhzS4nc8Y/s1600/8246719458_5dfbb2a2cf_b.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-F9Q6h5NWCKw/U2JezuIllwI/AAAAAAAADDQ/fQZhzS4nc8Y/s1600/8246719458_5dfbb2a2cf_b.jpg" height="150" width="200" /></a>Some questions though, do not have answers that feel satisfactory. And then there is the whole thing about not knowing what the future holds. All there really is to plant my feet on is what is in front of me right now. I am more than ok with that. Distance running is kind of the same. Being in the moment, being with myself is a big part of what I would try to do during a long run. <br />
<br />
Now the distances involve navigating the space between my CNS and my body, the emotions that surface with the myriad neurological sensations and the time it takes me to employ good old-fashioned self care. Running shoes are optional.<br />
<br />
<div style="text-align: center;">
<span style="font-size: large;"><b><a href="http://itrinot2forget.blogspot.com/2014/04/sneaky-ms.html" rel="nofollow" target="_blank">Sneaky MS</a></b></span></div>
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by <b>Cheri</b> at <b>I Tri not to Forget...</b></div>
<br />
After transitioning to the autoimmune paleo and Wahls protocols, I definitely have had more good days than bad, as far as my MS fatigue. I have also learned to be more in tune with my energy levels, and therefore what I schedule for the week, making sure I rest if I need to, so I don't crash. <br />
<br />
Having said all of that, there are days when I feel really good and I get caught up in the moment and push it too far. For example, last weekend, I started off my Saturday with a 1 hour vinyasa flow yoga class from yogaglo.com, then went for a walk with my daughter as she rode her scooter around our neighborhood and I ended up spending a couple hours in the afternoon out in my yard cleaning up the garden. I felt great and then it hit me, like somebody turned my switch to "off". I had just fixed dinner and then realized I was exhausted, and needed to lay down that minute. I basically ate dinner and went to bed and that was it for me. A couple months ago, I would have been down for the count the next day too, but I wasn't this time. I took it easy the next day, but I was still able to function, so I feel like I am making progress.<br />
<br />
I believe that my body is slowly healing, and I am making peace with this new life, but sometimes this "MSness" can just sneak up on me... <br />
<br />
<br />
This concludes the 155th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on June 5, 2014. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 3, 2014.<br />
<br />
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<span style="font-size: xx-small;">Photo Credit: <a href="http://www.flickr.com/photos/60252052@N00/8246719458/">Dawn - Pink Chick</a> via <a href="http://compfight.com/">Compfight</a> <a href="https://creativecommons.org/licenses/by/2.0/">cc</a></span> <br />
<br />Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-44097085207704712462014-04-03T20:00:00.000-04:002014-04-03T23:10:16.681-04:00Carnival of MS Bloggers #154<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
<br />
<div style="text-align: center;">
<span style="font-size: large;"><b><a href="http://valeriamsouza.wordpress.com/2014/03/31/multiple-sclerosis-the-first-two-years/" rel="nofollow" target="_blank">Multiple Sclerosis: The First Two Years</a></b></span></div>
<div style="text-align: center;">
by <span class="entity _586o" data-fulltext="Valéria M. Souza" data-group="all" data-icon="null" data-select="group" data-si="true" data-text="Valéria M. Souza" data-type="ent:user" data-uid="100006633660154"><b>Valéria</b> at </span><b>It's complicated.</b></div>
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What I remember most about the first two years of MS is the hunger. I remember lying flat on my mattress, hungry. Close your eyes, go back to sleep.<br />
<br />
I’m hungry.<br />
<br />
I’m tired. No: I’m decimated. In this game of rock-paper-scissors, tired always wins out over hungry. I close my eyes. I drift in and out of sleep. Four hours pass. I wake up and think: I’m so hungry. Sleep. Eight hours. Still hungry. More sleep. Twelve hours. So fucking hungry. Knocked out again. Sixteen hours. Twenty hours. Sometimes twenty-four or more. Still hungry. Still fucking hungry.<br />
<br />
Each time I awake I briefly contemplate getting up, foraging for something to eat. But the walk through the living room, past the bathroom, into the kitchen is long, and I am weak. The thought of opening the fridge or a cabinet, of microwaving something, is beyond me. And so I sleep.<br />
<br />
I cry.<br />
<br />
I remember crying because I was so fucking hungry but unable to get up and feed myself. I remember lying flat, limbs extended. Limp as a puppy, sobbing.<br />
<br />
Sometimes I could make it to the fridge. I remember eating bread. Rolls. Holding onto the walls for support. Using my apartment as a walker.<br />
<br />
I remember that when the disease hit it was nuclear. It obliterated me. I remember dreaming about 9/11 because my body identified with the collapse of those twin towers.<br />
<br />
Whenever I was trying to do something difficult that required an extensive amount of concentration—like traverse an apartment, open a fridge, or take a piss—I would listen to my own breathing. To the silence.<br />
<br />
I remember a stillness, a quietness that I’d almost never felt before and have almost never felt since (except on really bad days when, in class, I find myself again seeking out a wall to strategically hold onto in order to create the illusion that I’m not about to collapse–all of course while continuing to seamlessly deliver the day’s lecture on the present subjunctive, or vocabulary pertaining to zoo animals).<br />
<br />
Crossing a street can be a victory. Taking a piss can be victory. I count my breaths. I listen.<br />
<br />
I remember that for the longest time no human being touched me for any reason other than medical intervention. Nurses grasped my arms to insert needles or tie tourniquets. Doctors placed a firm hand on my back as I failed and failed and failed my Romberg’s test. Imaging techs gently guided my head into place for my 2 to 3 hour long MRI scans. The only touch I experienced was being strapped, tied, punctured, swabbed, infused, and physically manipulated. The worst is when they deliberately induce muscle spasms. I always beg for them not to deliberately induce muscle spasms. Please, please don’t do that thing. You know—that thing.<br />
<br />
I remember having to do pulse steroids every single month for almost a year—along with thrice-weekly injections of Rebif—just to achieve something remotely like “remission.” The drugs demolished my immune system, leaving me with the blood cell counts of someone HIV+.<br />
<br />
I remember being too weak to stand up after steroid infusions. Listen, I get 1,000mg of Solumedrol in 500ml of saline, — an assertion on my part which would inevitably cause the nurses to protest because “That’s more saline than normal. Why do you get so much saline?”<br />
<br />
If you don’t give me 500ml of saline and infuse slowly over the course of 2 hours I will throw up.<br />
<br />
“We usually infuse this in 30-40 minutes.”<br />
<br />
Fine, then I’ll throw up.<br />
<br />
“Fine. We’ll do it your way then.”<br />
<br />
Fine.<br />
<br />
They did it my way.<br />
<br />
I remember leaving Brigham and Women’s at rush hour on a weekday and the #66 bus being jam-packed and me with a bandaged arm, glassy eyes, and an inability to stand and nobody—nobody—would offer me a seat. I remember sitting on the floor of the bus because I could not stand. I became stubborn in my willingness to sit down on floors, on the ground. Whenever I was out in public and became too fatigued to stand, I would simply sit down—wherever I was. Right there. Sit.<br />
<br />
No, I don’t care who is looking. No, I don’t care what you think. I am sitting. Right now, right here, what I am doing is sitting, and I will get up when I am good and ready, and if you want to leave me here then go, fuck you, I don’t care.<br />
<br />
I just need a minute. I just need an hour. A day. A few days. Just a week. A month. A couple of years, actually. Be right back.<br />
<br />
Just need to get my bearings.<br />
<br />
Just need this wall here. This is a good, solid wall. I love this wall. It’s not going anywhere, and I can lean on it. Holy shit: this wall is amazing. This wall is here for me. I love you, wall. Wall, I love you.<br />
<br />
Whenever I would receive steroid infusions the only thing I could eat for days was Vietnamese food from Lês in Harvard Square. Pho chay, specifically.<br />
<br />
I need limes from the grocery store. I need Vietnamese food and I need limes. I need, like, 40 limes. I need to get them before the steroid crash that’s coming in a few hours. Before it’s too late. I have to go, now, to the grocery store and buy like $40 worth of limes. Right now. Don’t bother me. I am on a mission. Don’t text me anymore because I need limes, OK? Goodbye. I need limes.<br />
<br />
Steroids have a half-life of around 18-26 hours. If you’ve been infused with high doses for days in a row, your adrenal glands stop producing cortisol. Houston, this is a problem. I remember the crashes—the sweats, the muscle weakness, the inability to stand up (more so than usual), the bone pain.<br />
<br />
This is why I need Vietnamese food and I need limes, and I need them now, before it’s too late.<br />
<br />
I remember that I was left for dead for 2 years. Left for dead by everyone who was supposed to be there. Left for dead like an injured racehorse ready to be shot. I remember seriously weighing the hypothesis that perhaps I had already died and this was why I was being kept separate from the living. Why it seemed that no one could see me anymore. Why my ontological status seemed to have changed. I lay flat. Breathed. Waited. And sometimes, yes, I cried.<br />
<br />
<br />
<div style="text-align: center;">
<span style="font-size: large;"><b><a href="http://staciepradahoskins.blogspot.com/2013/11/my-body-buddy.html" rel="nofollow" target="_blank">My Body Buddy</a></b></span></div>
<div style="text-align: center;">
by <b>Stacie</b> at <b>Keep Doing What You're Doing</b> </div>
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I’m doing the best I can. I may not be doing EVERYTHING I can, but it’s still enough. <br />
<br />
I’ve been experiencing some additional MS symptoms lately. It’s completely understandable given I’m experiencing more stress than usual. Still, when healthy habits lead to feeling better it’s easy to blame myself for not living a perfect, healthy life when symptoms emerge. <br />
<br />
When I was diagnosed with MS, I felt like my body had betrayed me and I could no longer trust it. I thought I was super healthy, and suddenly my body went numb. Doctors told me I had an incurable disease that I’d had for years. <br />
<br />
In my research of how others coped with MS, I often heard people approach it as warriors fighting a daily battle against their disease. I can appreciate the analogy and it makes sense, but it never resonated with me. Fighting myself feels exhausting. And what am I fighting? I have a super active immune system that thinks the insulation on my nerves (myelin) is an invader and needs to be destroyed. My immune system is fantastic at destroying other invaders. It’s just confused with myelin some of the time. Bummer.<br />
<br />
It occurred to me to think of my body as my buddy who is great at some things and sucks at others but I love her just the same. My body didn’t betray me. She is doing the best she can. She held up magnificently for a long time, and she continues to do amazing things. My neurologist says with my MRI scans he would expect me to have some disability. At this point I have symptoms I notice but no one else does. I think it’s awesome that my body has compensated to get the nerve messages to parts of my body blocked by lesions.<br />
<br />
It’s taken me time to shift my thinking from feeling betrayed to trusting myself again. Now I think being healthy and having an incurable disease are not completely opposite ends of the spectrum. They can both be true in one body. <br />
<br />
My body has been doing the best it can all my life. Some of my habits help it, and some challenge it. Some activities and foods don’t support optimal physical health, but they nurture my mental health and feed my soul. Sometimes I’m coping and sometimes I’m nurturing. I think stressing out about not doing more can be more harmful to my health than the occasional indulgence.<br />
<br />
So I may not be doing everything I can, but I’m balancing all aspects of my health in order to lead a fulfilling, active and hopefully long life!<br />
<br />
<br />
This concludes the 154th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on May 1, 2014. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 29, 2014.<br />
<br />
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<br />Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-67407066041110019692014-03-06T08:10:00.000-05:002014-03-27T20:48:09.697-04:00Carnival of MS Bloggers #153<div style="text-align: center;"><i>Welcome to the <b>Carnival of MS Bloggers</b>, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div><br />
<div style="text-align: center;"><span style="font-size: large;"><b><a href="http://multiplesclerosis.net/living-with-ms/ms-hope-for-life-expectancy/" rel="nofollow" target="_blank">MS and Hope for Life Expectancy</a></b></span></div><div style="text-align: center;">by <b>Laura</b> at <b>MultipleSclerosis.net</b></div><br />
<i>Preface: this entry is about MS and mortality rates and lifespans, which some people find unsettling to think about; it is a tough topic to consider and even harder to write. Knowing this, you may choose to return to something else to read while I try to make sense of this.</i><br />
<br />
Many times over, I have said Multiple Sclerosis usually will not kill us – it can make our lives miserable and set the stage for other health problems to overtake us, but for the most part MS does not kill. Complications from MS can be serious – the most likely scenarios I think of with MS is no longer being <a href="http://multiplesclerosis.net/symptoms/mobilty-walking-gait-balance/" rel="nofollow" target="_blank">ambulatory</a>, and eventually being bed-ridden. People who are bedridden or even those who are in <a href="http://multiplesclerosis.net/treatment/devices-software-other-tools/" rel="nofollow" target="_blank">wheelchairs</a>, can develop problems with circulation. They easily can get pneumonia. Even simple bed sores from sitting or lying in one position too much can create infections that are often impossible to cure. Infections from UTI’s can go unnoticed for longer periods of time. Swallowing for some people becomes difficult and aspiration or choking could be lethal. But the MS – our autoimmune system turned onto ourselves – is not directly to blame, it is just complicit in our decline.<br />
<br />
When first diagnosed, I read somewhere the average life span of a person with MS used to be about 7 years less than the non-MS person. I also read that the advent of <a href="http://multiplesclerosis.net/treatment/managing-the-disease-progression/" rel="nofollow" target="_blank">Disease Modifying Therapies (DMTs) </a>had changed that picture and now there was very little gap between the two populations. These were words of great hope and I have shared them more than once, encouraging people to strongly consider selecting a DMT with their doctor’s help, and sticking with it.<br />
<br />
In discussion with various neurologists, I slowly began to see this picture wasn’t necessarily accurate. Many of these numbers and ideas were shaped around the patients who were actively seen by doctors and did not include those who opt out of treatment or couldn’t afford to see a doctor. Then there is another MS population – the people who end up in long-term care facilities. These people aren’t usually seen by neurologists and their care is handed over to other medical specialists. So much of the evidence to support this life span number was anecdotal and limited to a rather small population.<br />
<br />
Now I am forced to look at those numbers and ideas again – a study released in December 2013, <b><i>Survival in commercially insured multiple sclerosis patients and comparator subjects in the U.S.</i></b><i> </i><i>, </i>Kaufman et al., concludes that people with MS who have commercial insurance, live six fewer years than others. This study came to my attention when I began seeing headlines in my newsfeeds such as ‘People with MS live Shorter Lives’ and ‘MS Life Expectancy Shorter.’<br />
<br />
For this study the authors looked at a rather large sample population from the United States – over 30,000 MS patients, and almost 90,000 non-MS subjects, and compared death rates from 1996-2009. To be sure they were comparing apples-to-apples, they matched the study subjects by sex and the region of the country where they lived, and which insurance company provided their coverage. They used information found in the Social Security Administration Death Master File (SSA DMF) and the National Death Index, as well as the Optuminsight Research (OIR) database, which contains the records of the commercial health insurance companies in the United States. The researchers go into the fine detail as to how these cohorts were found, matched and studied and you can read the entire article online if you want those facts.<br />
<br />
This seems to be the first large-scale look at these records in the United States and yields much the same results as similar studies done in other countries. Researchers in Europe and Canada most recently have looked at the life expectancy of people with MS being 6-8 years less, depending on which study you read, compared to the projected 6 year mark in the US. There seems to be a consensus with these studies on the difference of years between MS and non-MS populations.<br />
<br />
In the midst of this sobering study there is encouraging news. It turns out that much older studies found a larger deficit number of years in MS vs non-MS populations. A Danish MS registry cited a 10 year mortality difference, but their study was performed between 1949-1996; the majority of those years were before DMTs were available – that didn’t begin until 1993. Over a similar span of decades many other studies also found results mirroring those of the Danish study. A study in Norway found an 8 year difference, Italian researches identified a ten year difference and another out of Austria cited 15 years for females and 11 years for males.<br />
<br />
It has only been in the past decade or two that neurologists are able to treat MS early and aggressively with DMTs. It is easy to draw the conclusion the availability of DMTs has shortened the disadvantage of life expectancy for those of us with MS. Yes, living 6 years less is crappy news but it is a better number than 8 or 10 or 15 years.<br />
<br />
The study raises many questions and perhaps other researchers will continue the thoughts, particularly helping us to understand the disadvantage people who don’t have commercial insurance face in life expectancy and chronic disease. The study does not look at mortality rates for people who have government insurance (Medicare or Medicaid or Tri-care) or no insurance at all.<br />
<br />
Discussing our mortality is not simple to do, and it is even more complex when it involves acknowledging the deck is stacked against us due to having Multiple Sclerosis. The discrepancy of years should be getting smaller and smaller over the next few decades as a greater percentage of people with MS will have had DMTs as part of their treatment for the entire time of their diagnosis. Right now the numbers include people who may not have had any treatment at all, or had disease modifying therapy available only a decade or so. I hope to be around and see what the numbers look like in another decade or two, and how the wider use of DMTs affects the lifespan of us all.<br />
<br />
Wishing you well,<br />
Laura<br />
<br />
<span style="font-size: xx-small;">(c) MultipleSclerosis.net</span><br />
<br />
This concludes the 153rd edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on April 3, 2014. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 1, 2014.<br />
<br />
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<br />
</div>Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-60161313225033521172014-02-06T19:31:00.000-05:002014-03-03T20:09:43.145-05:00Carnival of MS Bloggers #152<div style="text-align: center;"><i>Welcome to the <b>Carnival of MS Bloggers</b>, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div><br />
Special Announcement:<br />
<br />
Our blogger friend <b>Judy Mercado</b> of <b>Peace on the Journey</b> has published her inspiring and expressive haikus and poems in her new book <i><a href="http://www.amazon.com/Peace-Journey-Poems-Judith-Mercado/dp/149299829X" rel="nofollow" target="_blank">Peace on the Journey: Poems</a></i> which is available in <a href="http://astore.amazon.com/braandivo-20/detail/149299829X" rel="nofollow" target="_blank">paperback</a> and <a href="http://astore.amazon.com/braandivo-20/detail/B00HWDEVJO" rel="nofollow" target="_blank">Kindle</a> editions.<br />
<br />
<a href="http://ecx.images-amazon.com/images/I/313vl4ygGKL.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Peace on the Journey: Poems" border="0" src="http://ecx.images-amazon.com/images/I/313vl4ygGKL.jpg" height="200" id="bigImage" width="133" /></a><br />
Editorial Reviews<br />
<br />
“For those struggling with chronic illness, loss of a loved one, or any major life challenge, the Peace on the Journey poems affirm that one can still choose to smile and resolutely renew life. In facing hardship honestly but tempering it with hope, these healing poems light a path out of despair.”<br />
<br />
—Dr. Joan Barice<br />
<br />
“In deceptively simple seventeen-syllable nuggets, these poems convey a complexity of emotion and perspective that quite often transcends the limits of language. They are nuggets of shared humanity that find their mark squarely in the heart and soul. Sometimes in whispers, sometimes in shouts, Judith Mercado’s words resonate with wisdom and truth, and grace the reader with intimacy, honesty and understanding.”<br />
<br />
—Marc Stecker, Wheelchair Kamikaze<br />
<br />
Book Description<br />
<br />
The poems explore the theme of renewal in the face of adversity. Influenced by the haiku form, this collection offers a poem a day <br />
for a year, though one can easily start on any page and progress in any order. Peace on the Journey is enrolled in Amazon’s Matchbook program. This means that if you already purchased the print edition in the past (or purchase one now), the Kindle price is reduced by 50%. Ten percent of net book proceeds will be donated to the Myelin Repair Foundation. <br />
<br />
May my poems illumine your journey.<br />
<br />
~ Judy<br />
<br />
<br />
<div style="text-align: center;"><span style="font-size: large;"><b><a href="http://mschangedmylife.com/work-and-other-decisions/" rel="nofollow" target="_blank">Work and Other Decisions</a></b></span></div><div style="text-align: center;">by <b>Andrea</b> of <b>MS Changed My Life</b></div><br />
We had no idea what curve balls the MS was going to throw our way, but we had the<br />
basics: avoid heat, overexertion, and stress. I had been teaching 2nd grade for 4 years, so I was well established at my school. I informed my principal of the situation when I returned from my maternity leave. I had asked her to not say anything to anyone else. From the beginning I just didn’t want people to see the disease when they looked at me. I wanted them to see me, not the MS.<span id="more-32"></span> I don’t like for people to feel sorry for me or pity me. I never have. I handle what’s been given to me and move on with life. At any rate, I entered my 5th year of teaching that fall. I did tell some of my fellow teammates that if they see me stumbling through the halls, it was not because anyone had finally pushed me over the edge to cause me to drink at school. <img alt=":)" class="wp-smiley" src="http://mschangedmylife.com/wp-includes/images/smilies/icon_smile.gif" /> <br />
<br />
That school year came and went without a hiccup. I regained the feeling in my legs about 8 weeks after the whole episode began. We’d done lots of reading about MS being passed on to children, and we found that our children would have a slightly higher chance of developing MS than “regular” children. Mine wasn’t a genetic issue. No one else in my family has it. I’m #4 of 6 kids, have 9 cousins, aunts, uncles, and grandparents, but I was the “lucky” one. We felt that it would not be a reckless or careless decision to have another child. I’d had absolutely no issues after that 8 week numbness in 2004, and I’d had a wonderful first pregnancy and delivery – other than going into pre-term labor as a result of our first pug passing away in my arms in the car on our way to the emergency vet. We are crazy pug people; 4 pugs and 2 cats. Pretty awful experience losing our little buddy. Our son was born 3.5 weeks early, but he was 7 lbs. 7 oz. and was perfectly healthy. We agreed that it was time for another little one.<br />
<br />
My husband felt that it was also time for him to do what he could to support the MS Society by participating in the Cox MS Atlanta cycling weekend by riding 100 miles over 2 days. He signed up and raised money for the MS Society. It was obviously a charity event, but leave it to my husband to still make sure he crossed the line first. Our son and I raced to the finish (from home) to greet him. He finished so early that we missed his actual crossing of the finish line, but we were there soon after. That’s my guy! Forever in my corner.<br />
<div style="text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="http://blog.mschangedmylife.com/wp-content/uploads/2014/01/P6220013-e1390938825329.jpg" style="margin-left: 1em; margin-right: 1em;"><br />
<img alt="OLYMPUS DIGITAL CAMERA" class="size-medium wp-image-62 aligncenter" src="http://blog.mschangedmylife.com/wp-content/uploads/2014/01/P6220013-e1390938825329-224x300.jpg" height="300" width="224" /></a></div><i>Curtis’ first MS charity ride – September, 2005</i></div><br />
<br />
This concludes the 152nd edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on March 6, 2014. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 1, 2013.<br />
<br />
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<br />
</div>Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-58643935080509332362014-01-02T19:29:00.000-05:002014-03-03T20:09:43.142-05:00Carnival of MS Bloggers #151<div style="text-align: center;"><i>Welcome to the <b>Carnival of MS Bloggers</b>, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div><div dir="ltr" style="text-align: left;"><br />
<div style="text-align: center;"><span style="font-size: large;"><b><a href="http://tousledapostle.com/2014/01/25/the-last-5256000-minutes/" rel="nofollow" target="_blank">The Last 5,256,000 Minutes</a></b></span></div><div style="text-align: center;">by <b>Jamie</b> of <b>The Tousled Apostle</b></div><br />
Ten years is kind of a big deal.<br />
<br />
it’s a marriage that has lasted a decade or an object that stands the test of time, when something makes it to the ten-year mark, it’s worth celebrating. And that’s precisely what I’m doing tonight. Wayne is out playing a gig with the <a href="https://sites.google.com/site/peachtreejazzedition/" rel="nofollow" target="_blank">Peachtree Jazz Edition</a>, and I’m relaxing in our beautiful home. A fire is crackling in my living room, Debussy is playing on the radio, and I’m curled up in my pajamas, cozy as a cat.<br />
Ten years ago, things weren’t quite so copacetic.<br />
<br />
On the evening of January 25, 2004, I was writhing in a hospital bed, suffering from a <a href="http://www.mayoclinic.org/diseases-conditions/spinal-headaches/basics/definition/CON-20025295" rel="nofollow" target="_blank">spinal headache</a> I’d gotten from a spinal tap I’d undergone that afternoon. In the throes of that searing pain, my neurologist came in and told me, “You have MS. It’s not the end of the world. You can find more information on the Internet than I could ever tell you. Good night.” I’m not kidding; that’s all I got from him. After he’d left, we asked the nurse to call him and prescribe a pill for my headache. Both Wayne and I had been too shocked to ask when he was there.<br />
<br />
A word of advice—<b>NEVER</b> look up a health question on the web. For Gregory House, M.D., everything inexplicable had to be lupus. For the Internet, it’s cancer and certain death.<br />
<br />
Well, we did look it up, and we got the absolute worst case scenario for an MS patient. After an hour of scouring the web looking for a scrap of good news and bawling like babies, Wayne slammed the laptop closed and told me, “That’s enough.” That night, I was convinced that I’d never have a normal life ever again. And in some ways, I was right. I’ve not been the same since that day, and that’s a good thing.<br />
<br />
The eight year anniversary, which I wrote about <a href="http://tousledapostle.com/2012/09/18/if-he-wills-i-will/" rel="nofollow" target="_blank" title="If He Wills, I Will…">here</a>, was a big milestone for me. It seemed like an unreachable date, and now here I am, two years beyond what once seemed impossible. I’ve since learned to use that word sparingly, if at all. Why? Because, as Matthew 19:26 tells us, “with God all things are possible.” He proves that to me on a daily basis.<br />
<br />
The MS was just the first body blow in a five-year boxing match with life. I won’t go into the sad details here, but let’s just say that pretty much everything that could go wrong—short of one of us dying—did. But, as the speaker in Langston Hughes’ poem <a href="http://www.poemhunter.com/poem/mother-to-son/" rel="nofollow" target="_blank">“Mother to Son”</a> says, “I’se still goin’, honey, / I’se still climbin’, / And life for me ain’t been no crystal stair.”<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://tousledapostle.files.wordpress.com/2014/01/387443_2603540522662_120396095_n.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="The Family at Christmas 2012" class="size-medium wp-image-2835 " src="http://tousledapostle.files.wordpress.com/2014/01/387443_2603540522662_120396095_n.jpg?w=600&h=450" height="238" width="320" /></a></div><div class="wp-caption aligncenter" id="attachment_2835" style="text-align: center; width: 310px;"><div class="wp-caption-text">The Family at Christmas 2012</div></div><br />
Today, life isn’t without challenges, but there’s no cause for complaint. It’s not because I’m a saint; I’ve just learned that every difficulty has a reason. I know it because God has used the last ten years in a mighty way and transformed me into a usable vessel. But no matter what hardships happen, I know I’m far more blessed than I deserve. I have a wonderful husband who I adore, a loving family, a comfortable, safe home, an amazing job, and friends out the wazoo. I also recently became an aunt. (See adorable picture below for visual confirmation of the poo-dubber in question.)<br />
<br />
<div class="wp-caption aligncenter" id="attachment_2837" style="width: 310px;"><div class="separator" style="clear: both; text-align: center;"><a href="http://tousledapostle.files.wordpress.com/2014/01/1017234_10152135546321789_1797701410_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img alt="Me with the lovely Miss Beatrix" class="size-medium wp-image-2837" src="http://tousledapostle.files.wordpress.com/2014/01/1017234_10152135546321789_1797701410_n.jpg?w=600&h=590" height="295" width="300" /></a></div><br />
<div class="wp-caption-text" style="text-align: center;">Me with the lovely Miss Beatrix</div></div><br />
I didn’t earn these blessings; they were freely given to me by my God. He has bestowed it all on me with a loving, liberal hand, and my life is marked by his loving-kindness. And tonight, as I sit nestled in my home, I can tell you the words of Isaiah 41:10 are true and trustworthy: “Do not fear, for I am with you. Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand.” I can say they’re true because I learned to say it when the prognosis wasn’t as good, when the place I called home was a crummy apartment, and when I basically felt like Job sitting on the ash heap. And if he sees fit to take it all away tomorrow, I can say, “Yes, God is still good.”<br />
<br />
I recently watched an episode of the BBC’s <a href="http://www.imdb.com/title/tt1983079/?ref_=nv_sr_1" rel="nofollow" target="_blank"><i>Call the Midwife</i></a> in which the narrator says, “Health is the greatest of God’s gifts, but we take it for granted. It hangs on a thread as fine as a spider’s web, and the smallest thing can make it snap, leaving the strongest of us helpless in an instant. And in that instant, hope is our protector and love our panacea.”<br />
Those words resonated with me because I’ve know what it feels like when that gossamer string snaps and you free fall into the unknown. I know what it is like when your body betrays you and you realize death and decay are eager to strip away what they can with their spiny fingers. However, I choose not to dwell on such things and live a life marked by hope and love instead. I count it all joy.<br />
<br />
That’s something God made possible, and that’s the reason why I’m looking forward to the next ten years.</div><br />
<br />
This concludes the 151st edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on February 6, 2014. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, February 4, 2014.<br />
<br />
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<br />
</div>Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-28712120092319687312013-12-05T19:27:00.000-05:002014-03-03T20:09:43.140-05:00Carnival of MS Bloggers #150<div style="text-align: center;"><i>Welcome to the <b>Carnival of MS Bloggers</b>, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div><br />
<div style="text-align: center;"><span style="font-size: large;"><b><a href="http://thelifewelllived.net/2013/11/19/1001-days-in-the-life-of-a-happy-turkey-story/" rel="nofollow" target="_blank">1,001 Days in the Life of a Happy Turkey Story</a></b></span></div><div style="text-align: center;">From <b>Life Well Lived</b></div><br />
<br />
<a href="http://i1.wp.com/thelifewelllived.net/wp-content/uploads/2013/11/nest.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="nest" class="aligncenter size-medium wp-image-284" src="http://i1.wp.com/thelifewelllived.net/wp-content/uploads/2013/11/nest.jpg?zoom=2&resize=300%2C225" height="225" width="300" /></a><br />
As I am listening to <span style="text-decoration: underline;">The Black Swan, The Impact of the Highly Improbable </span> by Nassim Nicholas Talebin my car on the way to work this past week, I keep finding myself engrossed in analyzing where I think the logic a novel way to look at the world and where I find the logic lacking. I can not help it. Being raised sitting at a dinner table with a physicist questioning every assertion I made as a know it all teen, I have been trained to question all logic presented to me. As the title of the book implies, it is a book looking at the many instances when the one outlier event is more important than all of the preceding and following events.<br />
<br />
One of his examples is the 1,001 days in the life of a turkey. For the first 1,000 days of the Turkey’s life, the farmer is the good guy. In fact, he might be the best guy in the whole world because every time the turkey sees the farmer means he is about to get fed.<br />
Unfortunately for the turkey on the 1,001<sup>st</sup> day, the farmer has come to begin the Thanksgiving celebration preparations. The 1,001<sup>st</sup> day is the black swan event for the turkey because it completely changes how the first 1,000 days should be viewed. The farmer was not providing food because he wanted to make the turkey happy. He was doing it to fatten him up. Because the Thanksgiving massacre could not be foreseen by the Turkey with the knowledge/experience, it had and the result had such a large impact on the turkey’s life story, it met the author’s definition of a “Black Swan event.”<br />
<br />
One of the central points in the book involves one of my favorite topics, perspective. In the book, Taleb points out the problems with narratives as one of the things we should watch out for in our decision-making. For days 1 to 1,000, the turkey’s view is highly reliable, and all of the other animals on the farm should be listening to him. It is the 1,001<sup>st</sup> day that shows how wrong he was. If one takes Taleb’s parable to heart, one would think the turkey better off never to trust the farmer’s food in the first place, and the other turkeys most certainly should not listen to the first turkey. Instead, they should be mindful of the story of the 1,001<sup>st</sup> day.<br />
<br />
I try to take this story to my MS treatments. I have been on Tysabri for 7 years, and it has been a quality of life saver for me. If one were to read (too much in my opinion) into the turkey story, one would be hearing all kinds of warning bells. I will grant in the truest sense it would not be a black swan event because I can conceive of the possibility of getting PML (a potentially fatal brain infection). Still, what if one simply lumps PML with all the other things known and unknown which may go wrong taking a drug for longer than the duration covered in any published study? I do not pretend to know all that may go wrong. When I want information of the unpublished variety on drug outcomes, I have only the stories of patients on sites like patientslikeme.com.<br />
<br />
What I know is like the turkey during the first 1,000 days, I am currently happy and thriving. When I started taking Tysabri, it was newly reintroduced to the market after being pulled for causing PML resulting in patients’ deaths. Still, other treatments had failed to abate my increase in symptoms. Therefore, my wife and I came to the decision, “Give me 5 good years over 30 crappy ones.” Nobody is promised the 1,001<sup>st</sup> day. For that matter, nobody is promised tomorrow. In this light, I think the logic of worrying about the black swan events fails when confronted with a known medical condition for which there is no “cure.”<br />
<br />
Now, I as I listen to the rest of the book, I am keeping in mind two facts:<br />
<br />
First, nobody should stay on Tysabri for 7 or more years simply because I have survived. To do so would be to fall for one of Taleb’s unseen biases. Reading from all those who have thrived on the drug and deciding to go the Tysabri route for MS treatment with no further research is to ignore all those who would not write because the drug either didn’t work for them or killed them (preventing them from writing about it). So deciding based on my blog and others like it may be and probably is unwise.<br />
<br />
The second logical problem I keep running into is my minds need to create stories to better understand the why and how for things in my life. I note even in a book that seems to decry the prevalence of storytelling, the entire book is full of one story after another to illustrate his points. I think he is correct about the dangers of reading too much into stories because the “how and why” are all subject to the perspective of the storyteller. As one of my teachers said in high school, the victors write the histories. However, even they do not always know the truth behind why they won.<br />
<br />
Still, without stories, we are left with only statistics. Ironically, pure math misses as many truths as relying solely on story telling. I will never forget arguing with my calculus teacher in college over the answer to her word problem as she insisted the answer was “The bus can carry 19 and 2/3 people.” She marked my answer of 19 wrong insisting if I was going to round the number, I should have said 20. I told her I knew of no “2/3 person” and in fact, I knew of no “partial people” since our country tried to cut ties to racially and gender motivated ways of counting people. It was probably as much my attitude as my answer making her dismiss my answer as wrong refusing to give me credit.<br />
<br />
So with this in mind, I come back to Tysabri and the turkey. I continue to take it because it makes my life now better. Sure, the odds seem to get a little worse with every new set of statistics, but those are numbers. They don’t say anything about my ability to hold a full-time job, parent kids who need me, run a half marathon or any of a hundred other things I can now do which I probably could not if my former MS course had been unaltered. I may have my 1,001<sup>st</sup> day in the life of a turkey, but it will be after having lived for the full 1,000 days. I prefer this to the life of the turkey who chooses to live always hungry, always wanting.<br />
<br />
I note Thanksgiving does not come at the 1,001<sup>st</sup> day of every Turkey’s life. In my case, I hope Thanksgiving comes 2 months after I die comfortably in my sleep of old age having lived the life of a happy Turkey eating whatever my fate provided. <br />
<br />
<br />
This concludes the 150th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on January 2, 2014. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 31, 2013.<br />
<br />
<div style="text-align: left;"><a href="http://www.brassandivory.org/2013/12/carnival-of-ms-bloggers-150.html#comments">Comments for this post.</a><br />
<br />
</div>Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-14357505003994498072013-11-07T19:26:00.000-05:002014-03-03T20:09:43.138-05:00Carnival of MS Bloggers #149<div style="text-align: center;"><i>Welcome to the <b>Carnival of MS Bloggers</b>, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div><br />
<div style="text-align: center;"><span style="font-size: large;"><b><a href="http://redshotblueshot.blogspot.ca/2013/10/the-gift-of-time.html" rel="nofollow" target="_blank">The Gift of Time</a></b></span></div><div style="text-align: center;">by <b>Alison</b> of <b>One Shot Two Shot Red Shot Blue Shot</b></div><br />
I seriously do not know how parents who both work outside the home full time do it.<br />
<br />
I "work" at home, and we still find it incredibly challenging to ensure that our nine-year-old keeps up with all the homework she's getting. Luckily, because she and Graham come home to me after school and not to after school care, I can encourage her to do some of it right away. This has actually happened on several occasions. But even if she doesn't get to it until after supper, because I'm home we are usually done with supper by 5:30 or 6:00 and there is still an hour before bed time rituals begin.<br />
<br />
I know that some children are not even picked up from their caregivers until 5:30. Supper in homes where both parents have outside jobs may not even get onto the table until 6:30 or 7:00.<br />
<br />
If my daughter is too tired to finish her homework after supper or, as on Tuesday evenings, has an outside activity to attend (Hip Hop Dance), she is lucky to have me here in the morning to make sure she sits down and completes what she didn't finish the night before. Quite often she breezes through homework in the morning that she was struggling with the evening before.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-hTib6h5PjGs/UmEgCmurKyI/AAAAAAAAG-s/SbZsUKmlYBQ/s1600/clocks.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://2.bp.blogspot.com/-hTib6h5PjGs/UmEgCmurKyI/AAAAAAAAG-s/SbZsUKmlYBQ/s320/clocks.jpg" height="240" width="320" /></a></div><br />
We are so lucky to have the luxury of time. Although it is not an ideal situation financially (!), the fact that my illness makes working full time outside the home a virtual impossibility and definitely a bad idea, may just be a blessing for our family. True, we only have one car and will probably never be able to afford a bigger house, but we have enough to live comfortably. I am here with a listening ear when the kids come home from school, and I walk them to school in the mornings.<br />
<br />
My husband benefits from this situation as well. We don't have any childcare expenses which, even for after-school care, can be substantial, and he doesn't have to worry about taking time off when they are sick, because I'm here to look after them.<br />
<br />
Although I'm sure there will be things that the kids will regret about the fact that they had a mom struggling with MS, at least it has given me the opportunity to be present for them in a way that a lot of my friends can't be. No doubt they will be sick of me by high school, but I will still be here, keeping an eye on them, checking on homework, making dumb jokes and cooking chicken nuggets for supper.<br />
<br />
~ Alison<br />
<br />
<br />
This concludes the 149th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on December 5, 2013. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 3, 2013.<br />
<br />
<div style="text-align: left;"><a href="http://www.brassandivory.org/2013/11/carnival-of-ms-bloggers-149.html#comments">Comments for this post.</a><br />
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-56433771511508061122013-09-19T11:22:00.000-04:002013-10-01T11:23:39.600-04:00Carnival of MS Bloggers #148<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
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<span style="font-size: large;"><b><a href="http://misschili.livejournal.com/549469.html" rel="nofollow" target="_blank">MS Camp</a></b></span></div>
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By <b>Miss Chili's Hot Stuff</b></div>
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Next week, I'll be off to MS camp. What it's really called is something more like MS hospital-university. At any rate, it's only 4 weeks, which is why I think of it more like camp than anything else.<br />
<br />
Four weeks of living in a small room with WiFi, with 20 or so other people of different ages, different lots of things that I'm not, including Danish-speaking. Ugh. More on that later, I'm sure.<br />
<br />
Per and I were there on Monday for an introduction day. We went through the main building, saw the layout of the rooms, found where different activities took place, introduced ourselves to the rest of the 'campers' (*snerk*), and had a meeting with the woman who is my contact-whatchamacallit. During this meeting, we talked about what I could and couldn't do physically to what I would/wouldn't eat or what time I could possibly get up every morning to what I wanted to get out of my participation or what was reasonable to work towards -- not that they expect anything out of me, but this is something that many other MS-afflicted folk <i>want</i> to participate in, and not just once but as often as there is space available.<br />
<br />
Going through the various rooms, from dining rooms to exercise rooms to patients' rooms, Per wheeled me through and, when we were in the exercise room with the enormous Pilates balls, he wheeled me on towards a ball, so that I had no choice but to kick it. That's my story, and I'm sticking to it. </div>
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<br />
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<span style="font-size: large;"><b><a href="http://mirandasmsblog.com/2013/09/13/overcoming-ms-retreat-july-2013/">Overcoming MS retreat, July 2013</a></b></span></div>
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from <b>Miranda's MS Blog</b></div>
<br />
Hello! the madness of the summer is over (which I thoroughly enjoyed!) and at last I manage to blog about this amazing experience.<br />
<br />
<a href="http://mirandasmsblog.files.wordpress.com/2013/09/george-jelinek-et-al-breakfast-oms-meeting.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="george Jelinek et al, breakfast OMS meeting" class="alignleft size-full wp-image-167" height="213" src="http://mirandasmsblog.files.wordpress.com/2013/09/george-jelinek-et-al-breakfast-oms-meeting.jpg?w=1164&h=782" width="320" /></a>So in July, I attended the first UK retreat run by the Overcoming MS UK (OMS) organisation, (now a registered UK charity), who allowed me to go so that I can hopefully help them to run workshops etc in the UK, to help people with MS understand the effects of diet and lifestyle modification on MS.<br />
<br />
From left to right, this is Linda Bloom, patron & founder of OMS UK, who has MS herself and is very well, Sandra Neate, Prof Jelinek’s wife, an emergency medicine consultant in Australia, Professor Jelinek, professor of emergency medicine and author & founder of Overcoming MS ( & very fit & well with MS), Gary McMahon , head of OMS UK, all round top bloke, with a business management background, but utterly committed to health, having helped his wife recover form serious illness using dietary & lifestyle measures, Dr Craig Hassed, an Australian GP and medical university lecturer, author & international speaker on mindfulness, and me.<br />
<br />
<b>What did I expect?</b><br />
Well, I expected that I’d already know it all ( how arrogant!) …. I expected that I’d enjoy meeting the Professor and crew, but might shy away from too much socialising, not wanting to feel different as an MS nurse…. I expected I’d be bored in the evenings and took lots of work to do…. and that I might get a bit hungry on the fully vegan diet provided, and took a big loaf of bread for my bedroom… and I expected that 90% of the focus would be on diet & supplements, with a sliver of meditation thrown in for good measure….<br />
<br />
<b>What actually happened?</b><br />
a) I didn’t know it all… & I’ll share my new understandings here, b) I enjoyed meeting every person on the retreat, was inspired by the company of so many intelligent, stimulating individuals and couples who dare to think differently and think for themselves, had a lot of fun, was never once bored, never did any work (!), and am actively staying in touch with the group via an email group because I want to! c) Was absolutely stuffed, because the food was tasty, vibrant, delicious and really ‘stuck to your ribs’. <br />
d) I got my focus back through meditation, and realised how powerful the effects of even a boring daily grind of meditation that you don’t even want to do can be !!<br />
for this, it helped having a little cell, with no TV or internet connection….<br />
<br />
<a href="http://mirandasmsblog.files.wordpress.com/2013/09/prof-jelinek-his-wife-sandra.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Prof Jelinek & his wife Sandra" class="alignleft size-full wp-image-176" height="200" src="http://mirandasmsblog.files.wordpress.com/2013/09/prof-jelinek-his-wife-sandra.jpg?w=584" width="150" /></a>So, first impressions happened the evening before the retreat, when I went out for a meal with the OMS staff/trainers. Firstly, the Professor is seriously fit and healthy looking, and runs or swims daily more than I do in a week ( if not 2), and comes across as genuinely lovely, thoughtful, intelligent, educated, and kind person. He is obviously ably supported by his wife Sandra, who shares his qualities, diet & lifestyle, and took on the sessions about the structure & role of different fats.<br />
<br />
During the meal, in conversation, the Professor talked about how he would like to slow down his international work running the retreats ( he does already have his full time academic medical work), and I felt honoured to hear him relate this personal anecdote, with some emotion. He said that he had recently experienced a relaxation of the drive to always be working to get his message out there, and that it had caused him to wonder and reflect. For some reason his age suddenly became very meaningful to him, but he couldn’t work out why — until he suddenly realised that he had now passed the age that his mother had been when she died, severely affected by MS (she took her own life). And so somehow, he had ‘made it’ , and proved to himself the value of the work he’s been doing all these years.<br />
<br />
I’m not going to re-iterate all the points of the OMS approach here, as I’ve talked about it many times, and its all available for free on <a href="http://www.overcomingms.org/" rel="nofollow">http://www.overcomingMS.org</a> , there’s the books, and also a forum on the website where people can discuss points; I’m just going to go into some of the things I hadn’t quite nailed.<br />
<br />
We sat in a circle around the outside of a large room, or on beanbags in the middle, and there were about 40 people. Most people had come with their partner, and some on their own. Teaching was very good quality, and we had lots of time to ask questions and discuss fine points.<br />
<br />
<a href="http://mirandasmsblog.files.wordpress.com/2013/09/prof-jelinek-teaching-uk-retreat.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="prof jelinek teaching UK retreat" class="alignleft size-full wp-image-177" height="150" src="http://mirandasmsblog.files.wordpress.com/2013/09/prof-jelinek-teaching-uk-retreat.jpg?w=1164&h=878" width="200" /></a>Here’s the Prof teaching, and Linda in mid leap… she & Gary had organised and were running the show, she had her new baby in attendance, and during the week was constantly jumping up and physically running, fetching, carrying, leaping over boxes & beanbags, & looking radiant throughout.<br />
<br />
Flax seed oil – in the most recent research carried out by OMS ,taking this trumped fish oil for having reduced disease activity. The best amount and way to take it is 2 dessert spoons drizzled over food ( or used to dip bread or in salad dressing) daily, and apparently, the best tasting is from <a href="http://www.flaxfarm.co.uk/" rel="nofollow">http://www.flaxfarm.co.uk</a> I just got some, and can confirm, it looks like sunshine and tastes… nutty but fine. Going to see if I can get a discount for Bedford MS Therapy Centre….<br />
<br />
<b>Meditation</b><br />
I’m no stranger to meditiation, having taken it up in my 20s, however, life had started getting on top of me, and when I attended the retreat, I was pretty stressed.<br />
<br />
I was taken aback by the serious focus on meditation – every day, we started and finished the session with a half hour mindfulness meditation, led by Craig Hassed. I also did some of my meditation again in my room on a morning. It was hard! It is hard! But it is real – it has real, measurable mental and physical health benefits, and it’s worth doing every single day. By the end of the week I felt that I had met my real self again, and I was OK.<br />
<br />
<br />
This concludes the 148th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on October 3, 2013. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 1, 2013.<br />
<br />
<div style="text-align: left;">
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-20607467291162272372013-09-05T20:19:00.000-04:002013-09-06T08:21:15.340-04:00Carnival of MS Bloggers #147<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
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<span style="font-size: large;"><b><a href="http://danandjenniferdigmann.com/?p=2958" rel="nofollow" target="_blank">Inspiration is All Around</a></b></span></div>
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By <b>Jennifer Digman</b></div>
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Not so long ago, it really would puzzle me when someone would tell me what an inspiration I was. Generally, I would smile, say thanks and think to myself, “You really should strive to find inspiration in something a little higher than me and my <a href="http://www.healthline.com/health-slideshow/multiple-sclerosis" target="_blank"><b>Multiple Sclerosis.</b></a><b>”</b><br />
<br />
I mean, has anyone ever told you what an inspiration you are? An inspiration not because of your latest accomplishment but because you’re living with MS or some other illness.<br />
<br />
Really, like you had a choice in that matter?<br />
<br />
It wasn’t as though some great mystic force said, “How about living with a chronic illness for the rest of your life?” and your reply was, “Why, yes. That sounds good like a good plan.” And your inspirational life began.<br />
<br />
But it was my amazing husband, Dan, who made me realize people are not inspired by my just having Multiple Sclerosis: it is how I live with the disease that inspires others. My choice to move forward optimistically and with purpose regardless of what the disease dishes out may inspire some. I don’t live hoping to be an inspiration, but what a nice side effect to the decisions I make.<br />
<br />
Honestly, there are times when my positive attitude tank gets a little low, too. Fortunately I’ve realized that inspiration can be found all around us. For example, after finishing my graduate degree and unburying my nose from textbooks, I’ve rekindled my relationship with my neglected television and have found some great sources of inspiration.<br />
<br />
The Sundance Channel program <i><a href="http://www.sundancechannel.com/series/push-girls" target="_blank"><b>Push Girls</b></a> </i>follows the lives of five women who have been paralyzed by either illness or accident. The reality show chronicles the day-to-day challenges and triumphs that Angela, Tiphany, Mia, Auti and Chelsie each encounter. Since my becoming wheelchair dependent, I had never seen such honest, accurate depictions of life with a chair.<br />
<br />
<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="http://danandjenniferdigmann.com/wp-content/uploads/2013/08/elizabeth-me-standing-frame-001.jpg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="My beautiful niece Elizabeth joins me on my Standing Frame" class="size-medium wp-image-2960" height="300" src="http://danandjenniferdigmann.com/wp-content/uploads/2013/08/elizabeth-me-standing-frame-001-190x300.jpg" width="190" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My beautiful niece Elizabeth joins me on my standing frame.</td></tr>
</tbody></table>
These ladies are role models, inspirations and my peer group all at the same time. When Mia or Chelsie used a <b><a href="http://www.easystand.com/" target="_blank">standing frame</a></b>, they were strengthening their muscles—not thinking, “Hope this inspires someone.” But it did inspire someone – me. After buying my own used standing frame, I now stand 2 to 3 times a week for 30 minutes at a time. My circulation and breathing has gotten stronger. I feel more powerful and better about my abilities.<br />
<br />
<br />
Just as the summer season ended for <i>Push Girls,</i> I slipped into Lifetime’s hit fashion show <i><i><a href="http://www.mylifetime.com/shows/project-runway/season-12/designers" target="_blank"><b>Project Runway</b></a></i> </i>another one of my other TV favorites! But never did I expect this program would introduce me to a designer who inspires me in my life with MS.<br />
<br />
Justin is a 27-year-old fashion designer who is deaf. He is incredibly talented and lets his work speak for itself. As he has gotten closer to his fellow designers, Justin has taken the opportunity to gradually educate them about his <a href="http://www.nidcd.nih.gov/Pages/default.aspx" target="_blank"><b>deafness</b></a> and the deaf culture. His opening up to others about his realities is the same way I aspire to help others understand MS and what it’s like to live with this chronic illness Dan and I share.<br />
<br />
This is why he and I advocate, blog, speak and lead a self-help group. In addition to helping to better our lives, these activities also provide opportunities to help others move forward with theirs.<br />
<br />
Like all five Push Girls and Justin, I don’t believe any of us are trying to be inspirational. We are just living our lives as best we can—much like so many of you who are inspiring so many others just by the way you live.<br />
<br />
Do you ever think you are an inspiration to others? Whether or not you realize it, you are.<br />
<br />
Every day.</div>
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<br />
This concludes the 147th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on September 19, 2013. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 17, 2013.<br />
<br />
<div style="text-align: left;">
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-5940863329176020432013-08-22T10:26:00.000-04:002013-08-22T11:00:03.206-04:00Carnival of MS Bloggers #146<div dir="ltr" style="text-align: left;"><div style="text-align: center;"><i>Welcome to the <b>Carnival of MS Bloggers</b>, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div><br />
<div style="text-align: center;"><span style="font-size: large;"><b><a href="http://shortinthecord.blogspot.com/2013/08/just-this-moment-trip-report-from.html" rel="nofollow" target="_blank">Just This Moment - A Trip Report from Provence </a></b></span></div><div style="text-align: center;">by <b>Joan</b> of <b>A Short in the Cord</b></div><br />
<a href="http://1.bp.blogspot.com/-FCZsrGecKSQ/Ugv3bUI77qI/AAAAAAAAAhk/9uXCKfyEmdU/s1600/Fountain+in+Saignon.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-FCZsrGecKSQ/Ugv3bUI77qI/AAAAAAAAAhk/9uXCKfyEmdU/s320/Fountain+in+Saignon.jpg" width="240" /></a>It has been over two months since I returned from <a href="http://www.shortinthecord.blogspot.com/2013/05/preparing-for-provence.html" target="_blank">my trip</a> (aka <a href="http://www.shortinthecord.blogspot.com/2013/05/preparing-for-provence.html" target="_blank">my “heroic journey”</a>) to Provence in southern France. </div><br />
I continue to process my feelings and experiences from that great adventure, but think it's time to share some things with you because people keep <strike>bugging me</strike> asking me, "was it a good trip?" :-)<br />
<br />
Okay, so I brought back some things: postcards from the Chez Christine café in Saignon, bookmarks from an art gallery in Bonnieux, jams from a cherry festival in Casenuve, tapenades and placemats from a souvenir shop in Fountain de Vaucluse.<br />
<br />
I ate tender and tasty lamb wrapped in eggplant in St. Pantaleon les Vignes, and rabbit in Apt. I tried goat cheese, sheep's cheese, French coffees and wines. I marveled at the amazing geology of the mountains, explored the trees and plants, and tried to identify birds. I hiked, I drank, and I sat by the pool having deep conversations with deep people. I said "wow" and "yum" a lot! It was exotic and exciting.<br />
<br />
But I was exhausted for almost the entire trip. I'm not complaining. Really.<br />
<br />
I'm reminded of the song "My Body" by Young the Giant, which goes "…my body tells me, 'no,' but I won't quit 'cause I want more." And I wanted more of the experience of France.<br />
<br />
I had physically prepared for this trip by working out and increasing my time and distance on the treadmill. But I also studied meditation and practiced awareness, and worked on living in each moment. <br />
<br />
I had no problem with the walking, the climbing, the carrying luggage. But I did have a problem with fatigue from over- stimulation, communicating in another language, dealing with disruptions in routine. By the third day, I wrote in my journal that I was scared, didn't think I could make it to the end of the week because I was just so tired, so overwhelmed.<br />
<br />
But then my zen training took over and I told myself to live in the moment. Just <b><i>this</i></b> moment. Right now. Only right now. Don't worry about the rest of the week, worry about just this moment. And I can get through this one moment.<br />
<br />
I savored each moment. Then another. Then another.<br />
<br />
As I mentioned earlier, I brought back a few souvenirs (and pictures). But they really don’t matter. What matters is that I brought back a desire to continue to have fresh experiences, a willingness to try new foods, and a renewed confidence that I <b><i>can</i></b> go out in the world again with multiple sclerosis and debilitating fatigue. Even if it's just for one moment. <br />
<br />
So, YES, it was a good trip!<br />
<br />
<span style="font-family: Cambria, serif;"><span style="font-size: medium;"><br />
</span></span> <span style="font-family: Cambria, serif;">Back to <a href="http://shortinthecord.blogspot.com/" target="_blank">Home Page</a></span><br />
<span style="font-family: Cambria, serif;"><span style="font-size: medium;"><br />
</span></span> <span style="font-family: Cambria, serif;">PS - In case you missed it, here are links to my Heroic Journey:</span><br />
<span style="font-family: Cambria, serif;"><a href="http://www.shortinthecord.blogspot.com/2013/05/preparing-for-provence.html" target="_blank">Part 1</a> - The Call</span><br />
<span style="font-family: Cambria, serif;"><a href="http://shortinthecord.blogspot.com/2013/05/preparing-for-provence-after-call-is.html" target="_blank">Part 2</a> - After the Call Is Answered</span><br />
<span style="font-family: Cambria, serif;"><a href="http://shortinthecord.blogspot.com/2013/05/what-to-take-on-heroic-journey-provence.html" target="_blank">Part 3</a> - What to Take on a Heroic Journey</span><br />
<br />
This concludes the 146th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on September 19, 2013. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 17, 2013.<br />
<br />
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</div>Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-6873502633306876032013-07-25T15:33:00.000-04:002013-08-22T10:26:00.026-04:00Carnival of MS Bloggers #145<div dir="ltr" style="text-align: left;">
<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
<br />
<div style="text-align: center;">
<span style="font-size: large;"><b><a href="http://www.giftsofms.blogspot.com/2013/04/fluttering-synchronicity.html">Fluttering; synchronicity </a></b></span></div>
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from <b>Robert</b> at <b>The Gifts of MS</b></div>
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Well, "relapsing/remitting" is one thing, but "fluttering" is another.<br />
<br />
There's This Day, just a day like any other, except... my air-quotes "walking" is better. I use the self-propelled wheelchair briefly as a walker (hint to others who might want to try this with their wheelchairs: be sure to lock the wheels. Then, it's just an oddly-shaped walker. With the locks off, it's a face-planter) and things work... not so bad! Not bad at all! I think, <i>is my "walking" getting... <b>better</b>?</i><br />
<br />
Cut to This Other Day, just a day like any other except... my air-quotes "walking" is worse. BANG, it's worse. No creeping-slow-gradual-is-this-maybe-better improvement, it's BANG worse. Fortunately, that's a <i>metaphorical</i> bang, although I've felt that almost any second I was going to hit the ground, it hasn't happened yet. "Yet" is precisely what I'm hoping won't happen, but you never know...<br />
<br />
And these changes are day-to-day. Last night was bad, this morning isn't <i>quite</i> as bad, but it's also not quite as good as it has been, sometimes. And this isn't what I <i>think</i> is a relapse/remit pattern, and I'm only guessing because that's never been my experience of The Disease, it's not a multi-day or multi-week vastly better/vastly worse vacillation... It's "Dang, today's better!" followed by "Dang, today's worse!" No rhyme or reason, no "Gee, I did [x] and things worsened, I did [y] and things improved," no visible pattern of causation. Just ... fluttering.<br />
<br />
Well, that's life. Some days better, some days worse. Us M.S.ers, we just notice it more than we used to; we think it's happening to us because of The Disease, but it's really just the noticing that's due to The Disease. "Noticing" more clearly is also a side effect of meditation, especially zazen meditation, which is a hard path but one that I'd recommend more enthusiastically than The Disease. Involves fewer M.R.I.s, for one thing.<br />
<br />
And a cute pice of synchronicity: A friend of mine sent me a news clip, there's a study going on at the Mayo clinic involving just aspirin! Three groups, one gets placebo, one gets "baby aspirin" dosage, one gets the equivalent of four tablets a day. Well, I don't qualify (I don't have the right "kind" of M.S., I can't do a couple of other things they want someone to be able to do), but I seem already to be on the "some aspirin a day" path, thank you very much musculo-skeletal headaches, and thank you very much Excedrine for putting my favorite brand back on the market because those (for me) have always been better than pretty much anything else I've tried.<br />
<br />
So, I'm not being "studied" (as such, at least by the Mayo Clinic), but I'm workin' the same study, kind of, by being between the "high" and "baby aspirin" dosages.<br />
<br />
Doesn't really mean anything, statistically speaking, but it does cure my headaches. And really, what part of "makes me feel better" is a bad idea? Well, presuming it causes no "stealth" harm... feeling better is a good idea. Isn't it?<br />
<br />
Well, I think so. Besides, thanks to sensitivity gifted us by The Disease, I'm sure I could tell whether I had an active or placebo dosage, which eats into the "blind" part of "double blind" studies. Which means I wouldn't help them, they wouldn't help me. So, I'm staying home and taking my aspirin and wacko Chinese herbs.<br />
<br />
And for all of us who navigate the waters of The Disease... how often do we get to say "That's fine by me" and smile?<br />
<br />
Well then, let's do it:<br />
<blockquote class="tr_bq">
That's fine by me!</blockquote>
</div>
<br />
This concludes the 145th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on August 22, 2013. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, August 20, 2013.<br />
<br />
<div style="text-align: left;">
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-60179553756885143302013-06-27T15:32:00.000-04:002013-07-01T22:47:13.368-04:00Carnival of MS Bloggers #144<div dir="ltr" style="text-align: left;">
<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
<br />
<div style="text-align: center;">
<span style="font-size: large;"><b><a href="http://bikingms.blogspot.com/2013/06/other-voices-why-megan-supports-ms.html" rel="nofollow" target="_blank">Other Voices - Why Megan Supports the MS Society</a></b></span></div>
<div style="text-align: center;">
by <b>Rex Parker</b> of <b>Biking MS </b></div>
<div style="text-align: center;">
<br /></div>
<span style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px;">The <a href="http://bikingms.blogspot.com/2013/05/why-i-ride-rick-parker.html">reason I support the National MS Society</a> is well-known to readers of this blog. There are so many other compelling stories from people I'm connected with that I wanted to start sharing them with you...</span><br />
<a href="http://www.blogger.com/blogger.g?blogID=5713707141997504388" name="more"></a><br />
<span style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px;">The more of these stories I hear, I realize that their stories are mine and mine is theirs - we're all connected. So many families struggle to cope with MS. So many of us have lost family members and close friends. </span><span style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px;">I hope that many of you recognize your own struggles in these stories, and get the same sense of support and camaraderie</span><span style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px;"> that I do. And a sense of hope that we can all work together to realize a world free of MS.</span><br />
<span style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px;"><br />
</span> <span style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px;">First off here's my friend Megan Nettleton, Community Relations Specialist for the National MS Society here in Boise. Megan's story is well-known within the MS community here in Boise. Megan is married to Chris Nettleton, the sports director for KBOI Channel 2. Chris suffers from MS, and has been a vocal and active supporter of MS Society events here in town, often lending his talents to emcee events. </span><br />
<span style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px;"><br />
</span> <br />
<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="http://1.bp.blogspot.com/-UqWN8zs9JoQ/UbdFMSPaimI/AAAAAAAAAdk/z1BX0oj4o_Q/s1600/935781_10201040245066673_551910698_n.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://1.bp.blogspot.com/-UqWN8zs9JoQ/UbdFMSPaimI/AAAAAAAAAdk/z1BX0oj4o_Q/s320/935781_10201040245066673_551910698_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Megan and Chris</td></tr>
</tbody></table>
<span style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px;">Megan's story is interesting to me, as she has a unique personal and professional connection to the MS Society. Here's her story, in her words...</span><br />
<span style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px;"><br />
</span> <i><span style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px;">“Before working at the National MS Society, I managed a bank for six years. I was never one to believe that anyone could truly love their job, but I am a believer now. My </span><span class="il" style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px;">husband</span><span style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px;"> has MS, so it is an amazing feeling going to work and ultimately helping my </span><span class="il" style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px;">husband</span><span style="font-family: Calibri, sans-serif; font-size: 15px;"><span style="background-color: white;"> every day! Who else gets to say that they get to do that? And now, it is not just about him anymore, but I now work here for all the amazing people I have met along the way, people like Rex! People that give so much of themselves without a second thought. That is why I support the National MS Society…because they support me!”</span></span></i><br />
<span style="font-family: Calibri, sans-serif;"><span style="font-size: 15px;"><br />
</span></span><span style="font-family: Calibri, sans-serif; font-size: 15px;"><span style="background-color: white;"><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="http://2.bp.blogspot.com/-D_raSzui_rQ/Uba030G48fI/AAAAAAAAAdU/wFdnJ6AuNwE/s1600/WP_20130603_012.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="http://2.bp.blogspot.com/-D_raSzui_rQ/Uba030G48fI/AAAAAAAAAdU/wFdnJ6AuNwE/s320/WP_20130603_012.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and Megan at "Meet Me Monday"</td></tr>
</tbody></table>
Just think about what most people do when faced with an MS diagnosis in the family. Sure, there are phases of anger, denial, depression, etc. But Megan not only went about arming herself with the knowledge she'd need to help and support Chris - but she also went to work for the one organization that will give them the most support during this ongoing fight. Megan has the unenviable task of being a one-person shop here in Boise, and I appreciate the positive energy and dedication she brings to the job.</span></span><br />
<span style="font-family: Calibri, sans-serif; font-size: 15px;"><span style="background-color: white;"><br />
</span></span> <span style="font-family: Calibri, sans-serif;"><span style="background-color: white;"><span style="font-size: 15px;">And, to give you more insight into what Chris and Megan have to deal with, I swiped the following post from Megan's Facebook page. This is something she wrote when raising funds for her Walk MS Boise team...</span></span></span><br />
<span style="font-family: Calibri, sans-serif; font-size: 15px;"><span style="background-color: white;"><br />
</span></span> <span style="font-family: Calibri, sans-serif; font-size: 15px;"><span style="background-color: white;"><i>"I was thinking today that a lot of you probably don't know very much of my husband's story and his multiple sclerosis diagnosis. And here I am asking you for donations quite a bit lately, so I thought I would share a little bit about his journey:</i></span></span><br />
<span style="font-family: Calibri, sans-serif; font-size: 15px;"><span style="background-color: white;"><i><br />
</i></span></span> <span style="font-family: Calibri, sans-serif;"><span style="background-color: white;"><span style="font-size: 15px;"><i>In 2008 his feet went completely numb. His doctor thought it couldn't possibly be MS because it was in both feet equally - so he went through a lot of testing, including electro-shock therapy on his legs, and muscle tests that involved shoving a 3-inch needle into his calves and moving it around to see if his muscles were working properly. Crazy, I know. Then he had an MRI and based on those results, his neurologist told him that he either had a brain tumor or MS. It is weird to say this, but luckily, it was MS and not a brain tumor. </i></span></span></span><br />
<span style="font-family: Calibri, sans-serif;"><span style="background-color: white;"><span style="font-size: 15px;"><i><br />
</i></span></span></span> <span style="font-family: Calibri, sans-serif;"><span style="background-color: white;"><span style="font-size: 15px;"><i>Because my husband is an all-or-nothing kind of guy, he went on a therapy immediately, which entailed me ramming a 3-inch needle intramuscularly into his thigh. And any of you that know my husband - he is majorly phobic of needles, but this was something we did for the next 2 1/2 years. And then one day he went in for a generic check-up, and surprisingly his liver numbers were way elevated. They discovered that the therapy had started to damage his liver, so he had to immediately go off of it. His only other option at this point for therapy: a DAILY shot. Great. But, my husband bravely endured it for one month, even though he had a severe skin reaction that caused his body to be covered in red, itchy, sore welts that never seemed to go way. </i></span></span></span><br />
<span style="font-family: Calibri, sans-serif;"><span style="background-color: white;"><span style="font-size: 15px;"><i><br />
</i></span></span></span> <span style="font-family: Calibri, sans-serif;"><span style="background-color: white;"><span style="font-size: 15px;"><i>What other choice did he have? Remember...all or nothing! </i></span></span></span><br />
<span style="font-family: Calibri, sans-serif;"><span style="background-color: white;"><span style="font-size: 15px;"><i><br />
</i></span></span></span> <span style="font-family: Calibri, sans-serif;"><span style="background-color: white;"><span style="font-size: 15px;"><i>It was then that the first pill for people with MS was released...TRIUMPH! He has been on it ever since, and has done very well! And this is all thanks to research...which brings me to my conclusion: please donate to our Walk MS Boise team to help raise money for research so more therapies may one day be available!"</i></span></span></span><br />
<span style="font-family: Calibri, sans-serif;"><span style="background-color: white;"><span style="font-size: 15px;"><i><br />
</i></span></span></span> <span style="font-family: Calibri, sans-serif;"><span style="background-color: white;"><span style="font-size: 15px;">Of course, the <a href="https://secure3.convio.net/nmss/site/Donation2?idb=1095096949&41466.donation=form1&df_id=41466&FR_ID=19245&PROXY_ID=5957534&PROXY_TYPE=20">funds we are raising for Bike MS</a> contributes to the same research that helped provide new therapies for Chris.</span></span></span><br />
<span style="font-family: Calibri, sans-serif;"><span style="background-color: white;"><span style="font-size: 15px;"><br />
</span></span></span> <span style="font-family: Calibri, sans-serif;"><span style="background-color: white;"><span style="font-size: 15px;">Thanks for sharing that, Megan! </span></span></span><span style="background-color: white; font-family: Calibri, sans-serif; font-size: 15px;">Look for more "other voices" stories over the coming weeks...</span></div>
<br />
This concludes the 144th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on July 11, 2013. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 9, 2013.<br />
<br />
<div style="text-align: left;">
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-57909753197928360692013-06-13T15:32:00.000-04:002013-07-01T22:44:15.244-04:00Carnival of MS Bloggers #143<div dir="ltr" style="text-align: left;">
<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
<br />
<div style="text-align: center;">
<span style="font-size: large;"><b><a href="http://mylifeaccordingtoms.blogspot.com/2013/06/the-cold-hard-blue-truth.html">The cold, hard, blue truth</a></b></span> </div>
<div style="text-align: center;">
by <b>Annettia</b> at <b>My Life According to MS</b></div>
<br />
<div class="MsoNormal">
I still have days where I forget about my new reality.<span style="mso-spacerun: yes;"> </span>I guess sometimes it is quite easy for me to forget.<span style="mso-spacerun: yes;"> </span>I mean, minus the bone-numbing fatigue and the almost peeing in my pants at least once a day and the excruciating nerve pain I really can forget that I have different abilities.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
I mean, I guess that’s expected, right?<span style="mso-spacerun: yes;"> </span>I am still considered a newbie…I think.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
So, sometimes I forget about my ability status.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br />
Until I am reminded…</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br />
Usually by that cold, hard, deep blue rear-view mirror placard I keep in my purse.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
This recently happened to me.<span style="mso-spacerun: yes;"> </span>I’ve been feeling quite “normal” whatever that means.<span style="mso-spacerun: yes;"> </span>Then this week it was a tad humid and I’m kind of fighting a cold or allergies or something.<span style="mso-spacerun: yes;"> </span>That always messes with my abilities.<span style="mso-spacerun: yes;"> </span>Then it was a bit warm at work.<span style="mso-spacerun: yes;"> </span>And I had to walk quickly.<span style="mso-spacerun: yes;"> </span>And I started to feel off…</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br />
I always start to get a little bit scared and worried when that feeling happens.<span style="mso-spacerun: yes;"> </span>You know, that feeling where my legs get a little weak.<span style="mso-spacerun: yes;"> </span>And this isn’t the good weak like I just saw my crush walking toward me.<span style="mso-spacerun: yes;"> </span>This is the weak where I may not be able to walk to my car after work.<span style="mso-spacerun: yes;"> </span>Or the kind of weak where I may need my mom to wheel me out of Target in the shopping cart.<span style="mso-spacerun: yes;"> </span>Or the kind of weak where I have to find a seat in the middle of a store and rest for a bit before I move on.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br />
Then, the unthinkable happened.<span style="mso-spacerun: yes;"> </span>I went to lunch with my work team to celebrate a coworkers baby.<span style="mso-spacerun: yes;"> </span>My supervisor sat right next to me.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br />
Now, remember, I keep my handicap placard in my purse in case I’m ever not driving and I need it.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br />
I am normally very aware of the bright blue placard in my purse and do a fabulous job at hiding it from people that do not yet know of its existence.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
Until this day.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br />
Oh yeah, I totally forgot that I was with an entire TEAM of people that are not yet aware of my ability status.<span style="mso-spacerun: yes;"> </span>And I am not yet ready to inform this team of people.<span style="mso-spacerun: yes;"> </span>And my supervisor was right next to me.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br />
As I was shuffling through the contents of my purse looking for my wallet, my cold, hard, blue placard found its way to the top of my purse and poked its head out of the zipper.<span style="mso-spacerun: yes;"> </span>I noticed my supervisor discreetly glance at my purse right at that moment.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
I think I was found out.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br />
But she didn’t say a word to me.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
We are all therapists!<span style="mso-spacerun: yes;"> </span>Come on.<span style="mso-spacerun: yes;"> </span>What would she say?<span style="mso-spacerun: yes;"> </span>“Why are you a cripple?”<span style="mso-spacerun: yes;"> </span>Or, “You don’t look like you need that!”<span style="mso-spacerun: yes;"> </span>I doubt any of those words would come out of her mouth.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br />
But I still felt that fear.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
I made it through the rest of the day without any other incidences involving my ability status and actually forgot about the entire scenario until I was driving home that evening.<span style="mso-spacerun: yes;"> </span><br />
That’s when it hit me.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
I have a disability.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
I honestly, truly, 100% have a permanent disability.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br />
What. The. Hell.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
And cue the uncontrollable tears.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br />
How do I forget these things?<span style="mso-spacerun: yes;"> </span>It’s not like MS is easy to forget.<span style="mso-spacerun: yes;"> </span>Especially when it pervades every single fragment of my life.<span style="mso-spacerun: yes;"> </span>It’s not as if MS is something that just fades into the distance and can easily be forgotten.<span style="mso-spacerun: yes;"> </span>It’s not like I don’t wake up every single morning wondering if this will be the day when my next relapse hits or the day where my legs decide to not work again or the day my eyes decide to develop optic neuritis.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br />
But the fact of the matter is…I often forget.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
Until I am reminded by that cold, hard, blue truth.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
I think I would forget more actually, without that placard.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
Maybe I have a lesion on that part of my brain that should remember about my disability!</div>
</div>
<br />
This concludes the 143rd edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on June 27, 2013. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 25, 2013.<br />
<br />
<div style="text-align: left;">
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-9862921177185890302013-05-30T15:31:00.000-04:002013-07-01T22:46:11.676-04:00Carnival of MS Bloggers #142<div dir="ltr" style="text-align: left;">
<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
<br />
<div style="text-align: center;">
<span style="font-size: large;"><b><a href="http://bikingms.blogspot.com/2013/05/why-i-ride-rick-parker.html" rel="nofollow" target="_blank">Why I Ride - Rick Parker</a></b></span></div>
<div style="text-align: center;">
by <b>Rex Parker</b> of <b>Biking MS</b></div>
<br />
A lot of you know that I ride Bike MS in honor of my late brother, Rick. But only a few of my friends in Boise were fortunate enough to get to meet him. So I thought I'd write a bit more about Rick this week, so that everyone could get to know him a little better.<br />
<br />
<a href="http://www.blogger.com/blogger.g?blogID=5713707141997504388" name="more"></a>First off - I had three older brothers, and had a very different relationship with each one. Here's the line-up...before you start writing comments about my cardigan, I should tell you this picture is 25 years old.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<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="http://2.bp.blogspot.com/--xZjfw256SQ/UWIL9mfGE4I/AAAAAAAAARk/2Xdh0oZtazs/s1600/family_8.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="256" src="http://2.bp.blogspot.com/--xZjfw256SQ/UWIL9mfGE4I/AAAAAAAAARk/2Xdh0oZtazs/s320/family_8.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">From left to right: Russell, Robert, Rex (me), Rick</td></tr>
</tbody></table>
I am the youngest, Rick the oldest. Despite the age difference, he was my best friend. Russell was closest in age to me, so of course we fought all the time growing up - and there's still some tension there today. Robert helped raise me as my parents farmed and held down second jobs. My relationship with Rob was more parent-child growing up, so that was often adversarial as well. That changed as I got older - Robert and I grew very close in our adult lives.<br />
<div>
</div>
<div>
<br />
Rick, however, was always my hero. I absolutely idolized Rick growing up. Being the oldest, he was in and out of the house when I was a kid. His visits from college were the highlights of my year. I'd count the days until he arrived for a visit, and I'd cry when he left. Many of my best childhood memories include Rick.</div>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-ZysEo0XVGHM/UWIGXjKY-XI/AAAAAAAAARA/SdMXmwspUks/s1600/rick_2_ps.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://3.bp.blogspot.com/-ZysEo0XVGHM/UWIGXjKY-XI/AAAAAAAAARA/SdMXmwspUks/s320/rick_2_ps.jpg" width="251" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rick Parker, HS Senior Photo, 1975</td></tr>
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One of those many memories is when Rick took me to see an R-rated movie when I was 8 or 9 - the first "Alien" movie at the drive-in in Terry, Montana. My parents told him not to, but he knew I wanted to go and snuck me out of the house to see it. I spent a good part of the movie on the floor of the car, scared to death. But I loved it. If my parents read this post, this may be news to them.<br />
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Rick also taught me how to shoot a basketball. If you've ever seen me play basketball, you'll realize I'm not doing Rick any favors by telling you this.</div>
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Rick fostered my love of reading - and his gifts of books were a constant throughout my life, starting at age 7 with a science-fiction art book that I have to this day. Rick was not a casual gift-giver, either - nearly every book I got from Rick has a hand-written inscription inside. Rick was a gifted writer, and majored in journalism in college. I treasure those books.<br />
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When Rick was crippled by MS, he kept the gifts coming. He once wheeled himself downtown several miles to meet Steve Earle (one of my favorite music artists) before a concert, at a book signing for Steve's first book, "Doghouse Roses." And then he wheeled himself home in the dark. All for a gift - not a birthday gift, not a Christmas gift - just a random gift that he knew I'd love.<br />
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Rick and I often liked the same books. Rick once read a book called "West With The Night," an autobiography of the first person, Beryl Markham, to fly over the Atlantic from East to West - and he knew I'd love it. Rick had a very hard time leaving the house in those days, and had no use for computers (no internet shopping for him) - so for Christmas that year, he inscribed and gave me HIS copy of the book.<br />
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I could fill an entire blog post with nothing but stories about Rick's giving. If he had $10 to his name, he'd want to give you $20. And he always wanted to provide the best for his kids.<br />
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Back to the pre-MS days...<br />
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When I graduated high school in 1987, I left home immediately to go spend a year screwing around with Rick in Missoula, Montana. Rick had just met his future wife, Earlene, and would soon be starting a family. I was driving a 1966 Chevrolet Biscayne that was on its last legs, so I biked a lot that summer. Having no bike when I got to Missoula, Rick set me up with a sweet old Schwinn Le Tour.<br />
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-ZJs5fraLC4E/UWIGdGIGkwI/AAAAAAAAARQ/RFHItmx0j60/s1600/rick_family_xmas_card_199X.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="250" src="http://1.bp.blogspot.com/-ZJs5fraLC4E/UWIGdGIGkwI/AAAAAAAAARQ/RFHItmx0j60/s320/rick_family_xmas_card_199X.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rick's family from left to right: Travis, Rick, Earlene, Jeramy - around 1994</td></tr>
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Rick was an avid road cyclist, and was starting to get more serious about it - he had just upgraded to a 1987 Schwinn Super Sport - which was a very expensive purchase, I'm sure, for a guy trying to finish college and working nights at a hotel. As many of you know, that Schwinn Super Sport is the bike that I rode in Bike MS Idaho last year (more on that bike later.) One of Rick's favorite events was <a href="http://www.missoulabike.org/tosrvwest/" target="_blank">TOSRV </a>(Tour of the Swan River Valley) and he was also the top fund-raiser in the 1987 Montana Lung Association ride, where he won an early mountain bike - a Bianchi Grizzly. As I look back, many of the things I'm passionate about - craft beer, cycling, music, reading - are all things that Rick was passionate about as well. To say that Rick was influential in my life is an understatement.<br />
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Life moved on - I joined the Navy, then went to college (Go <a href="http://www.montana.edu/" target="_blank">Bobcats</a>!) Rick got on with his life as well - and seemed to ride less and less as he did all the things you do to start a new family - house purchase, raising kids, etc, etc. But cycling was never too far from his mind. As time went on, Rick and his family were a constant presence in my life. Many trips to Missoula, many concerts and other outings.</div>
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During my college years (1992 - 1997) there were some incidents that were, in hindsight, clear warning signs for MS. Rick would get awfully shaky sometimes after having a few beers, which I chalked up to age. Now that I'm the same age as he was at the time, I realize how ridiculous that was. Also, he would complain sometimes about his leg going numb while he was at work. For hours at a time. You'd think that would warrant a trip to the doctor, but Rick never went (to my knowledge) - and I don't think any of us were armed with the information we have now about MS, so I don't think anyone was pushing him to get it checked out.<br />
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After college, and a quick two-year stint in the Bay area, I moved to Boise. The proximity to Missoula (compared to San Francisco) was nice, and Rick and I got back to more regular visits, often around Montana State / Montana football games. One of those years (2002, I believe) Rick came down to Boise to spend the football game weekend with me. He seemed a bit off that weekend, and was particularly sick on Sunday. Then, after flying home Sunday night, he woke up Monday and found that he had completely lost vision in his right eye.<br />
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Things progressed swiftly at that point. The MS diagnosis came quickly - steroids cleared up his vision, and the fight began. It wasn't much of a fight, though. By the time he was diagnosed, the MS was pretty advanced. There were no significant remissions, and MS took him down steadily limb-by-limb. He went from a cane to a walker to a wheelchair within two years. Soon, it was hard to understand him, as MS took out his facial muscles. The eyesight would come and go.<br />
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There would be some brief respites, after steroid therapy, but they didn't last long. Rick would often schedule those right before a visit from my parents so they wouldn't see him at his worst. I think that the pain the disease caused his children and my parents affected him more than the disease did.<br />
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I should also note that we lost Robert to a tragic car accident in 1998 when he was only 37. My parents had already buried a child, and they were facing losing another. I will never be able to fully comprehend the grief this caused them. Rick understood this, though, and I'm sure it tore him up.<br />
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We lost Rick in August 2011. He was in a nursing home at that point, and had lost the ability to swallow on his own. He was getting serious infections, could no longer feed himself, and I think a breathing tube was on the horizon. Enough about that...<br />
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Maybe the worst effect that MS had on Rick was the depression that he fought. He spent some time on anti-depressants, but I don't think he liked them. Rick did not always take his degrading condition gracefully. The vast majority of the time, Rick was the same sweet, generous man he always was - but at times he could be very difficult to be around. I think he yelled a lifetime of profanities in those years. MS did that. MS took him from us, I think, long before he physically passed away.<br />
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I stayed in Missoula the week after Rick passed away, doing what I could to help Rick's kids with all the required arrangements. It helped to have tasks to focus on. At some point in the week, I noticed the Schwinn Super Sport hanging up in my nephew Jeramy's garage, and it appeared to be in great shape. It had been well cared-for all those years. The bike was just a bit too big for either of my nephews, so Jeramy asked me if I wanted it. I sure did.<br />
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Soon, I was riding that bike all over Boise, and having a blast on it. I hadn't ridden a road bike in years. For a long time, I was too fat to ride a road bike...but had recently cleaned up my act, was fit and raring to go. I don't remember where or how I first heard about the MS 150 bike ride, but the minute I heard about it - I knew that I wanted to ride it on Rick's bike. And I did. It was one of the most rewarding things I've ever done and I would give anything if Rick had been around to share the experience with.<br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-f5WEncDyRlI/UWOeQPdvNOI/AAAAAAAAASM/zrUpSYkWVz4/s1600/168212_3774228748065_23065457_n.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="http://4.bp.blogspot.com/-f5WEncDyRlI/UWOeQPdvNOI/AAAAAAAAASM/zrUpSYkWVz4/s320/168212_3774228748065_23065457_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rick's Bike at Payette Lake, near downtown McCall, ID</td></tr>
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Unfortunately, the old Le Tour and the Bianchi have not survived the years - but if I ever part with that '87 Super Sport it will have to be pried from my cold, dead legs. Thank you so much, Jeramy, for entrusting me with it.<br />
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I think often of Rick's and my last road trip together. I was fortunate to be able to take Rick to Glacier National Park in 2007. It was a great trip, but challenging, as I was an inexperienced caregiver. Rick was very patient with me that week. He was in his element in the Lake McDonald lodge - striking up conversations with everyone he could, joking and laughing as much as possible. In particular, I remember the night we ate dinner in the lodge. Rick had a very difficult time holding eating utensils at the time, and we were still trying to figure out how to make that easier for him. As a result, half of what was on his plate usually ended up on the floor. When our very eager, college-age waiter came over to serve us, Rick started laughing uncontrollably, and when he finally composed himself, said "This poor kid has no idea what he's in for tonight!"<br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-1YygKMhllMc/UWOW_9sk0jI/AAAAAAAAAR8/hdIC9_xUxIA/s1600/021.JPG" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://3.bp.blogspot.com/-1YygKMhllMc/UWOW_9sk0jI/AAAAAAAAAR8/hdIC9_xUxIA/s320/021.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rick on the Trail of the Cedars, Glacier National Park, 2007</td></tr>
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If Rick could see me struggle to write this blog post, he'd probably have a good laugh as well - and call me a "buffoon" - one of his favorite words. I wish I were as eloquent a writer as Rick, but this will have to do. And I'll just close by saying I think about Rick every day and would give up anything I own to have one more conversation with him. I know that won't happen. But if, through sharing Rick's story, I can help make life a little better for someone else affected by MS - I know Rick would be very pleased. And that is why I ride Bike MS.</div>
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<br />
This concludes the 142nd edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on June 13, 2013. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 11, 2013.<br />
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-19492218554072550472013-05-16T15:31:00.000-04:002013-07-01T22:40:39.629-04:00Carnival of MS Bloggers #141<div dir="ltr" style="text-align: left;">
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<i>Welcome to the <b>Carnival of MS Bloggers</b>, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
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<b>Life with My So-Called Chronic Disease</b></div>
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<i>In my kingdom of the sick, the emperor has no clothes</i></div>
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by Jennifer Glen</div>
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With one obvious exception, the word chronic never refers to anything good. Someone is a chronic liar or a country is in a chronic state of civil war. Or someone has a chronic disease. Like me.<br />
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Four months into my multiple sclerosis diagnosis—and four years since the first symptoms that caused a neurologist to warn me that such a diagnosis might be coming—it still feels weird to acknowledge the fact that I am sick. I don’t <i>feel</i> sick. Unlike those diagnosed with other chronic diseases, like, say, rheumatoid arthritis or Chrohn’s disease, I endure no pain from my illness. My symptoms—some mild slurring, followed by numbness on half my face—have only impacted four weeks of the last four years and, while annoying, were neither debilitating nor readily detectable to anybody I was interacting with.<br />
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In fact, the entire infrastructure of the disease has been far more annoying and debilitating than any of the symptoms. Navigating the various doctors’ offices, insurance companies, drug companies, and pharmacies that comprise the US healthcare system experience for someone like me—that is, someone who is lucky enough to have good health insurance—is not an activity fit for someone who has just been diagnosed with a disease. You are flighty and distracted and can’t remember to ask your doctor important questions, but that is the exact moment when the execution of your own healthcare requires you to have the steely nerves of a crane operator combined with the determination of a blood hound. Even when you’ve charted a course through that labyrinth, any sense of victory is diminished by a nagging concern over what it would be like without your prized health insurance and the eight months still to go until the pre-existing conditions clause of Obama Care kicks in. (To put a number on that anxiety, consider that the latest MS treatment, a pill that has more or less been around for twenty years to treat psoriasis, was recently released at a wholesale price of $54,900 per patient per year.)<br />
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Faced with this you naturally wonder, as do people who should know better, like your husband and your shrink, if you should even bother taking medication for your mostly invisible disease. Surely you are about to wake from the absurdist dream you’ve been having where you, a needle phobic, are now supposed to shoot up a medicine every Thursday that makes you feel like you have the flu for sixteen hours in order to treat a disease that is currently presenting zero symptoms. But then the second opinion neurologist, the one who is a foremost expert in the field, tells you in her calm Texas drawl that, yes, you <i>have</i> to take the preventative medicine; that first neurologist you saw wasn’t just making that up. Your disease may feel like a fraud now, but MS has the astonishing potential to morph from an annoyance to, say, paralysis, an outcome you don’t want to dice with much.<br />
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In her recent book, <i><a href="http://amzn.com/0802718019">In the Kingdom of the Sick</a></i>, Laurie Edwards writes about her experience growing up of frequent doctor appointments to treat what was eventually diagnosed as a chronic and very rare lung disease. She notes that she never perceived her experience then in terms of a chronic illness. Rather she experienced each incident separately, in a reactionary mode, and only as an adult did she make the emotional adjustment to acknowledge the long-term nature of what she was dealing with. This, she says, “is the most daunting aspect of any chronic illness, whether you are the patient grappling with a diagnosis or a healthy person who hopes it never happens to you: It isn’t going to go away.”<br />
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And she is right, especially the part about the healthy people. This explains why most my friends never ask me much about my MS. I am a living, breathing incarnation of what they hope never happens to them, and they’d understandably rather not talk about it. Frankly, it is a preferable state of affairs to those who do ask me about it because, invariably, these types want to know if I am going to change my lifestyle. This, of course, is just a polite way of asking me if I am going to drink less wine. I am not, both because I like wine and because drinking wine does not cause MS (I asked my neurologist). But as I once was, these people are desperate to believe that there is something I (read: they) can do to control bad things, like MS, from happening. Deep down there is some little part of them desperate to believe that there must be a reason (read: something bad I did) I got MS.<br />
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I am neither surprised nor angered by this reaction, but that is probably because MS has not yet, and hopefully never will, made me very sick. Just the other day I heard a reasonably intelligent person imply that the rise in women’s cancers is due to women letting themselves get burnt out. On behalf of the three women in my life who have recently lost both their breasts to cancer, I wanted to ring this woman’s neck, or at least buy her a copy of <a href="http://en.wikipedia.org/wiki/Illness_as_Metaphor">Susan Sontag’s <i>Illness as Metaphor</i></a><i>. </i>Thirty-five years have passed since Sontag pointed out the lunacy of using romanticized language to create an acceptable way to blame the victims of disease and, yet, it is still fairly commonplace to hear people imply stress or bottled emotions or some other similarly nebulous thing is to blame.<br />
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I, however, am not blameless when it comes to hiding behind language to deal with my disease. In my book, <i><a href="http://amzn.com/1938314301">Americashire: A Field Guide to a Marriage</a>, </i>I write about renaming the permanent lesions on my brain—the main physiological manifestation of my MS:<br />
<i>In the absence of any answers from science I turned to the transformative power of language. Lesions were for lepers or people with venereal disease. They simply would not do. Therefore, I decided I had les ions, pronounced lā-ē-uh, with a trademark French grunt on the last syllable. It still sounded vaguely scientific, yet at the same time foreign and alluring. And best of all, it made me feel, just for a moment, like I was in control.</i><br />
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Despite my wariness over the use of flowery language when it comes to illness, I am giving myself a pass on this one. I liken it to the same rule of the universe that makes it OK for me, but nobody else—especially my husband—to make fun of my immediate family. After all, MS is <i>my </i>disease, and I can call it anything I want.</div>
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This concludes the 141st edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on May 30, 2013. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 28, 2013.<br />
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-61017758695373725032013-05-02T10:16:00.000-04:002013-05-06T10:17:20.267-04:00Carnival of MS Bloggers #140<div dir="ltr" style="text-align: left;"><div style="text-align: center;"><i>Welcome to the <b>Carnival of MS Bloggers</b>, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div><br />
<div style="text-align: center;"><span style="font-size: large;"><b><a href="http://www.giftsofms.blogspot.com/2013/04/fluttering-synchronicity.html">Fluttering; synchronicity </a></b></span></div><div style="text-align: center;">from <b>Robert</b> at <b>The Gifts of MS</b></div><br />
Well, "relapsing/remitting" is one thing, but "fluttering" is another.<br />
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There's This Day, just a day like any other, except... my air-quotes "walking" is better. I use the self-propelled wheelchair briefly as a walker (hint to others who might want to try this with their wheelchairs: be sure to lock the wheels. Then, it's just an oddly-shaped walker. With the locks off, it's a face-planter) and things work... not so bad! Not bad at all! I think, <i>is my "walking" getting... <b>better</b>?</i><br />
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Cut to This Other Day, just a day like any other except... my air-quotes "walking" is worse. BANG, it's worse. No creeping-slow-gradual-is-this-maybe-better improvement, it's BANG worse. Fortunately, that's a <i>metaphorical</i> bang, although I've felt that almost any second I was going to hit the ground, it hasn't happened yet. "Yet" is precisely what I'm hoping won't happen, but you never know...<br />
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And these changes are day-to-day. Last night was bad, this morning isn't <i>quite</i> as bad, but it's also not quite as good as it has been, sometimes. And this isn't what I <i>think</i> is a relapse/remit pattern, and I'm only guessing because that's never been my experience of The Disease, it's not a multi-day or multi-week vastly better/vastly worse vacillation... It's "Dang, today's better!" followed by "Dang, today's worse!" No rhyme or reason, no "Gee, I did [x] and things worsened, I did [y] and things improved," no visible pattern of causation. Just ... fluttering.<br />
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Well, that's life. Some days better, some days worse. Us M.S.ers, we just notice it more than we used to; we think it's happening to us because of The Disease, but it's really just the noticing that's due to The Disease. "Noticing" more clearly is also a side effect of meditation, especially zazen meditation, which is a hard path but one that I'd recommend more enthusiastically than The Disease. Involves fewer M.R.I.s, for one thing.<br />
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And a cute pice of synchronicity: A friend of mine sent me a news clip, there's a study going on at the Mayo clinic involving just aspirin! Three groups, one gets placebo, one gets "baby aspirin" dosage, one gets the equivalent of four tablets a day. Well, I don't qualify (I don't have the right "kind" of M.S., I can't do a couple of other things they want someone to be able to do), but I seem already to be on the "some aspirin a day" path, thank you very much musculo-skeletal headaches, and thank you very much Excedrine for putting my favorite brand back on the market because those (for me) have always been better than pretty much anything else I've tried.<br />
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So, I'm not being "studied" (as such, at least by the Mayo Clinic), but I'm workin' the same study, kind of, by being between the "high" and "baby aspirin" dosages.<br />
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Doesn't really mean anything, statistically speaking, but it does cure my headaches. And really, what part of "makes me feel better" is a bad idea? Well, presuming it causes no "stealth" harm... feeling better is a good idea. Isn't it?<br />
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Well, I think so. Besides, thanks to sensitivity gifted us by The Disease, I'm sure I could tell whether I had an active or placebo dosage, which eats into the "blind" part of "double blind" studies. Which means I wouldn't help them, they wouldn't help me. So, I'm staying home and taking my aspirin and wacko Chinese herbs.<br />
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And for all of us who navigate the waters of The Disease... how often do we get to say "That's fine by me" and smile?<br />
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Well then, let's do it:<br />
<blockquote class="tr_bq">That's fine by me!</blockquote></div><br />
This concludes the 140th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on May 16, 2013. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 14, 2013.<br />
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</div>Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-5713707141997504388.post-57433038444727924072013-04-18T10:15:00.000-04:002013-05-06T10:16:14.539-04:00Carnial of MS Bloggers #139<div style="text-align: center;">
<i>Welcome to the <b>Carnival of MS Bloggers</b>, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.</i></div>
<br />
<div style="text-align: center;">
<span style="font-size: large;"><b><a href="http://fairyofdisenchantment.wordpress.com/2013/04/08/proprioception-and-balance/" rel="nofollow" target="_blank">Proprioception and Balance</a></b></span> </div>
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from <b>Sunshine</b> at <b>Needle Fatigue</b></div>
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<a href="http://fairyofdisenchantment.files.wordpress.com/2013/04/vertigo-3.jpg"><img alt=""I look up, I look down..."" class="size-medium wp-image-409" height="151" src="http://fairyofdisenchantment.files.wordpress.com/2013/04/vertigo-3.jpg?w=300&h=227" width="200" /></a><br />
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“I look up, I look down…”</div>
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There are many MS symptoms that will not respond well to medical treatment; in short, you’re pretty much stuck with them. Dizziness — my #1 symptom — is one of them, and so is paresthesia (numbness in the hands, in my case) and other forms of dysthesia (distortion of the senses). One of the oddest things I’ve dealt with is the latter, in particular a distortion of <i>proprioception</i>, which is basically how you know where you are in a given space. Ask my husband how many times I bang into doorways, <i>with</i> my glasses on. And this is also why I am almost never without my walking stick for any great distances; if the dizziness won’t get me, the Weirdness (as I refer to that sense that I’ve suddenly stepped into another, vaguely syrupy dimension) will. But I will say something positive here: although most forms of dysthesia may be out of your control, if you have proprioceptive issues, it is <i>totally worth looking into balance therapy</i>.<br />
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Sometime after that summer 2011 relapse, the neurologist suggested I give balance therapy a try. Why? Because it wouldn’t hurt. (It was a good thing I had good insurance.) But I was surprised that I really did derive some good effects from it, and I’ve just reminded myself of this lately. The exercises the therapist gave me, I will now share for free.<br />
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The first exercise is pretty odd. But it works. And it may also improve your ability to read in a moving vehicle! Take a business card or anything of that size with at least three sizes of font on it. Tape it to a blank wall. Now, keeping your eyes focused on the largest font, move your head from side to side, reading that text, for 2 minutes. (Your head moves but your eyes do not). No more than 2 minutes, but no less. Do this three times a day if you can, for a few days, then graduate to the smaller font. After a week, tape that business card to a wall with some kind of pattern (I used a map, but wallpaper should work). Do the same thing. Keep this up for a couple weeks before you start the next exercise.<br />
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Exercise No. 2 seems a little more normal. But not much. Stand in a corner so that you are protected from a fall on both right and left sides. (You can put your arms out to the sides to catch you just in case. If you have someone living with you I would enlist their help too, at first…) Put your right foot in front of your left one (heel to toe). Close your eyes. Stand there for 2 minutes. You will feel like you’re definitely going to fall. But the important thing about this exercise is it’s a test of will power. Say to yourself “I am standing perfectly still; I am not moving and I am not going to fall over.” You’ll feel your calf muscles go nuts with the strain of keeping you upright, and in the beginning you <i>will</i> catch yourself falling. Your brain is convinced that you’re teetering on some precipice somewhere. But <i>you</i> know better. <i>You</i> say “No, brain, I’m perfectly graceful standing here looking like a Degas ballerina. I refuse to fall.” Or something like that. (If you are a man, please forgive me; I have no idea what the masculine analog of a Degas ballerina might be.) Now do the same thing with the left foot in front of the right. You will fail miserably in the beginning. But with time, you will have a smug smile on your face when the 2 minute timer goes off and you haven’t wavered in the slightest.<br />
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Exercise No. 3 always reminds me of Alfred Hitchcock’s <i>Vertigo</i>. In your corner, keep your eyes open. Cross your feet just as you did in the last exercise, but keep your eyes open. Now look up. Look down. Look up. Look down. Now look to the right side. Look to the left. Look right. Look left. Follow with your eyes as you go. Do this for 2 minutes. And yes, according to my therapist, 2 minutes has been scientifically verified as both the minimum and the maximum length of time to do all of these exercises.<br />
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I hope these are helpful for my fellow meanderers and weavers. If nothing else, I just saved you a few hundred bucks and several hours at the physical therapist’s!<br />
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This concludes the 139th edition of the <span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;">Carnival</span></span>. The next <i><b>Carnival of MS Bloggers</b></i> will be hosted here on May 2, 2013. Please remember to submit a post (via <a href="mailto:carnivalofmsbloggers@gmail.com">email</a>) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 30, 2013.<br />
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Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.com