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	<title>My Life Works Today! &#187; Diagnosis</title>
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	<link>http://mylifeworkstoday.com</link>
	<description>A Living, Learning and Lupus Network</description>
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		<title>Breathing Lessons</title>
		<link>http://mylifeworkstoday.com/2010/07/25/breathing-lessons/</link>
		<comments>http://mylifeworkstoday.com/2010/07/25/breathing-lessons/#comments</comments>
		<pubDate>Sun, 25 Jul 2010 19:40:53 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Autoimmune Diseases & Syndromes]]></category>
		<category><![CDATA[Books]]></category>
		<category><![CDATA[Chronic Illness]]></category>
		<category><![CDATA[Diagnosis]]></category>
		<category><![CDATA[Health]]></category>
		<category><![CDATA[Labs & Testing]]></category>
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		<category><![CDATA[Oregon]]></category>
		<category><![CDATA[Personal Stories]]></category>
		<category><![CDATA[Relationship-focused]]></category>
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		<category><![CDATA[book review]]></category>
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		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=1075</guid>
		<description><![CDATA[Having a book to read is never a problem and I have the bookshelves to prove it.  My biggest dilemma is in deciding which book to read.  I immediately head to the library when I get stuck choosing from my ‘shelves of best intentions’.  There, I feel pressured (through shame) to walk out of there [...]]]></description>
			<content:encoded><![CDATA[<p>Having a book to read is never a problem and I have the bookshelves to prove it.  My biggest dilemma is in deciding which book to read.  I immediately head to the library when I get stuck choosing from my ‘shelves of best intentions’.  There, I feel pressured (through shame) to walk out of there with something and, just as it is with many of my milk runs to the store, I rarely leave with what I went in for in the first place.</p>
<p>My goal for the latest library excursion was to pick up references to begin Fall prep on <strong><a title="Target Practice Crews" href="http://mylifeworkstoday.com/mlwt-project-services/target-practice-workshops/" target="_blank">MLWT Target Practices</a></strong>, some new classes and to catch up on writing those over-due articles.  What I ended up leaving with was a book, found by accident, and an absolute treasure that I want to share with you today. </p>
<p>Reading and writing daily about life with illness can sometimes be, well, depressing and too close to home.  Yet, I struggle with reading fiction while the deadlines, emails from clients and project collaborations taunt me from my desk.  Reality, in many forms, just crashes into any story where I’m trying to lose myself.  You would think that the last book I would choose when trying to escape would be one about illness.  Perhaps you have more sense than I, because that is exactly what I ended up doing.  I am so glad I had this lapse in ‘better’ judgment, though, as I would have really missed out.</p>
<p><strong><span style="color: #0000ff;">Dr. Jaime Weisman’s</span></strong> book<span style="color: #0000ff;"><strong> <em><a title="Book by Jaime Weisman, M.D" href="http://www.powells.com/biblio/17-9780865476028-0" target="_blank">As I Live and Breathe: Notes of a Patient-Doctor</a></em></strong><a title="Book by Jaime Weisman, M.D" href="http://www.powells.com/biblio/17-9780865476028-0" target="_blank"> </a> </span>(North Point Press, 2002) caught my attention for two big reasons:</p>
<blockquote><p><strong><span style="color: #0000ff;"><span style="color: #000000;">1)</span> I related immediately to the cover photo, as someone who has also received medical treatments for a faulty immune system; and</span></strong></p></blockquote>
<blockquote><p><strong><span style="color: #0000ff;"><span style="color: #000000;">2)</span> It was written by a <em><span style="color: #ff6600;">doctor</span></em> who is spending a little time on my side of that tube.</span></strong> </p></blockquote>
<p>I half expected the book to be written in a way to get me to feel compassion for a physician who falls from grace.  What I discovered—no, received—was another lesson in not judging a book by its cover.  Once again, I go in for one purpose and leave with another.  <strong><em><span style="color: #ff6600;">I expected revelations about a doctor’s new perspective and emerged with an appreciation of the human spirit</span></em></strong>. </p>
<p>The absolute beauty of this book, for me, was in her writing.  Ms. Weisman was a patient first and headed towards a career in writing.  However, her turn towards medicine was a gift to many of us and still offers a reassuring voice through her practice or her writing.  <strong><em><span style="color: #0000ff;">Although she touches on medical issues and some of her own struggles getting through her days as a patient, I didn’t feel burdened by grief or enlightened about how best to navigate the medical puzzle.</span></em></strong>  She leads the reader both forward and backwards in time, skillfully tying together the thoughts and experiences that make up the cycles of experiences we <em><strong><span style="color: #0000ff;">all</span></strong></em> go through, healthy or not as healthy.  Her essays gracefully describe the complexity of her condition as a reference point for the reader, rather than as a badge of honor.  From that reference point, I wanted to journey with her and absorb her experiences in order to find a place or a word to help describe my own.  Her memories, poignantly expressed, resonated within me as a person first and as a patient second. </p>
<p><strong><span style="color: #0000ff;">This book is grounded on the importance of relationships</span></strong>.  All relationships, hers ranging from the professional ones she establishes as a physician and the personal ones she cherishes as a daughter.  Even the relationship she develops, continuing over time, with her body is testimony to the old adage “<strong><span style="color: #0000ff;">becoming your own best friend</span></strong>.”  The relationships she takes part in as a patient herself, with other patients and her medical team, are keenly explored and serve a models in finding your own best sources of support. </p>
<p>After finishing this book, I am left with a sense of comfort.  There were so many passages that caused me to stop, mid-paragraph, and really pay attention to what she was saying.  Or, sometimes, to simply to pause and release some pent-up tears.  One quote, in particular, took me back to my own memories following my diagnosis over a decade ago.  At my ten-year appointment, where kidney failure and dialysis are quite possible for 50% of us with lupus, my doctor asked me if I realized how sick I had been.  My answer, as I’ve mentioned here on this blog before, was “no”.  Ms. Weisman puts my feelings about what I <em><strong><span style="color: #0000ff;">did</span></strong></em> know in the early years of my illness in the best way possible and answers my doc’s question better than I did: </p>
<blockquote><p><strong><span style="color: #ff6600;">“<em>The cure for the fear of dying is living</em>.”  </span></strong> (Pg. 210) </p></blockquote>
<p>This book, and Ms. Weisman, herself, exemplify how powerful working towards a cure can truly be—for all us.</p>
<p><strong><span style="color: #0000ff;">~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</span></strong></p>
<p><span style="color: #000000;">Note:  I received no compensation for reviewing this book. </span></p>
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		<title>OR Scleroderma Foundation&#8217;s Cheri Woo Education Seminar This Saturday!</title>
		<link>http://mylifeworkstoday.com/2010/03/09/or-scleroderma-foundations-cheri-woo-education-seminar-this-saturday/</link>
		<comments>http://mylifeworkstoday.com/2010/03/09/or-scleroderma-foundations-cheri-woo-education-seminar-this-saturday/#comments</comments>
		<pubDate>Tue, 09 Mar 2010 07:56:55 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Chronic Illness]]></category>
		<category><![CDATA[Community]]></category>
		<category><![CDATA[Coping]]></category>
		<category><![CDATA[Diagnosis]]></category>
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		<category><![CDATA[Local Resources]]></category>
		<category><![CDATA[Oregon]]></category>
		<category><![CDATA[Scleroderma]]></category>
		<category><![CDATA[Support Groups]]></category>
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		<category><![CDATA[Lupus]]></category>

		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=852</guid>
		<description><![CDATA[Just a reminder about the Educational Seminar going on this Saturday, offered through the Oregon Chapter of the Scleroderma Foundation.  Even if you don&#8217;t have this particular disease, the information covered is offered by medical specialists, it is a disease that shares similar symptoms and challenges as lupus, and involves wonderful patients, group members and chapter [...]]]></description>
			<content:encoded><![CDATA[<p>Just a reminder about the Educational Seminar going on this Saturday, offered through the Oregon Chapter of the Scleroderma Foundation.  <strong><span style="color: #0000ff;"><em>Even if you don&#8217;t have this particular disease, the information covered is offered by medical specialists, it is a disease that shares similar symptoms and challenges as lupus, and involves wonderful patients, group members and chapter officers  who welcome opportunities to meet with others locally.</em></span></strong>  I have been impressed with all that this group has done over the past years and I recommend that you join them this weekend for a few hours, to meet them yourself.</p>
<p>Here  is their invitation to you and a little information about what their afternoon plans to offer:</p>
<p>&#8220;<strong><a title="OR Chapter Scleroderma Fdtn" href="http://www.scleroderma.org/chapter/oregon/index.htm" target="_blank">The Oregon Chapter of the Scleroderma Foundation</a></strong> has announced that <strong><span style="color: #0000ff;">Dr. Catherine J. Markin</span></strong> – a noted specialist in pulmonary disease and critical care medicine at <strong><span style="color: #000000;">Legacy Good Samaritan Medical Center</span></strong>, and Director of the Legacy Pulmonary Hypertension Program – will present the <strong><span style="color: #ff6600;">9th Annual Cheri Woo Education Seminar</span></strong> ’s keynote address scheduled for <strong><span style="color: #0000ff;"><em>Saturday, March 13, 2010 at <a title="Tuality Health Ed Ctr website" href="http://www.tuality.org/home/index.php/events/search/" target="_blank">Tuality Health Education Center</a> in Hillsboro. The free public seminar runs 10am through 2pm</em></span></strong>.</p>
<p>Dr. Markin will offer “Lung Disease in Systemic Sclerosis: New Insights and Treatment Options” as part of the chapter’s daylong line-up of expert presentations <strong><span style="color: #ff6600;">intended to increase overall education and raise regional awareness of scleroderma</span></strong>, also known as systemic sclerosis.</p>
<p>In addition to Dr. Markin, the seminar is scheduled to present <strong><span style="color: #0000ff;">Dr. Anna A. Bar</span></strong>, an Assistant Professor of Dermatology and Dermatologic and Cosmetic Surgery at <strong><span style="color: #000000;">Oregon Health &amp; Science University</span></strong>.  Her seminar topic is Cutaneous Manifestations of Scleroderma and Laser Treatment.  <strong><span style="color: #0000ff;">Justin Elson, DMD</span></strong>, of <strong><span style="color: #000000;">Gentech Dentist Hillsboro</span></strong>, will speak at the seminar on Scleroderma and Oral Health.</p>
<p><strong><a title="Scleroderma Fdtn National website" href="http://www.scleroderma.org/" target="_blank">Scleroderma</a></strong> (<em>pronounced sclare-a-derma</em>), or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The term comes from two Greek words:<em><span style="color: #0000ff;"><strong> “sclero” meaning hard, and “derma” meaning skin</strong></span></em>. Symptoms can range from extreme sensitivity to heat and cold to hardened skin to diminished lung capacity and disfigured face and limbs. Scleroderma can be fatal, and there is no known cause or cure.  <strong><span style="color: #0000ff;">An estimated <span style="color: #ff6600;">300,000</span> people have scleroderma, of which <span style="color: #ff6600;">80,000 to 100,000</span> people in the US have the systemic form of the disease</span></strong>.  Scleroderma affects four times as many women as men, usually between the ages 46 to 65.</p>
<p><strong><em><span style="color: #0000ff;">The annual spring education seminar by the Oregon Scleroderma Chapter is always free and open to the public</span></em></strong>. Breakfast and lunch are provided with every registration.</p>
<p>For more information, and to <strong><a title="Registration" href="http://www.scleroderma.org/chapter/oregon/2010EdSem_Reg.htm" target="_blank">register online</a> .</strong></p>
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		<title>Meet Becca Seitz, our new MLWT Guest Blogger</title>
		<link>http://mylifeworkstoday.com/2010/02/24/meet-becca-seitz-our-new-mlwt-guest-blogger/</link>
		<comments>http://mylifeworkstoday.com/2010/02/24/meet-becca-seitz-our-new-mlwt-guest-blogger/#comments</comments>
		<pubDate>Wed, 24 Feb 2010 23:17:12 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Chronic Illness]]></category>
		<category><![CDATA[Diagnosis]]></category>
		<category><![CDATA[Guest Blogger]]></category>
		<category><![CDATA[Health]]></category>
		<category><![CDATA[Holistic]]></category>
		<category><![CDATA[Lupus]]></category>
		<category><![CDATA[MLWT]]></category>
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		<category><![CDATA[Treatment Approaches and Perspectives]]></category>
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		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=797</guid>
		<description><![CDATA[Hi All!  I&#8217;m Becca Seitz, licensed acupuncturist and owner of Thrive Acupuncture in NE Portland.  You can read about what got me into acupuncture and Chinese medicine at the link Maria gave above.  But here, today, I think I&#8217;d like to talk about my philosophy for my practice (and my life!)  When I graduated from [...]]]></description>
			<content:encoded><![CDATA[<p><a href="http://mylifeworkstoday.com/wp-content/uploads/2010/02/thrive52inch.jpg"><img class="aligncenter size-thumbnail wp-image-798" title="thrive52inch" src="http://mylifeworkstoday.com/wp-content/uploads/2010/02/thrive52inch-150x150.jpg" alt="" width="150" height="150" /></a></p>
<p>Hi All! </p>
<p>I&#8217;m <strong><em><span style="color: #ff6600;">Becca Seitz</span></em></strong>, licensed acupuncturist and owner of <strong><a title="Thrive Acupuncture website" href="http://www.thriveacupuncture.org/blog.html" target="_blank">Thrive Acupuncture</a></strong> in NE Portland.  You can read about what got me into acupuncture and Chinese medicine at the link Maria gave above.  But here, today, I think I&#8217;d like to talk about my philosophy for my practice (and my life!)  When I graduated from acupuncture school, I started my business under the name To The Point Acupuncture.  Get it?  Acupuncture points, getting right to the point of a health concern, not dancing around it.  Catchy, huh?  I love puns and really love businesses that have enough of a sense of humor about themselves to include them in their name.  I certainly like to be the first to laugh at (with?) myself.  This name was <strong><span style="color: #0000ff;">PERFECT</span></strong> for me!</p>
<p>But you may notice that I have a different business name now &#8211; what drove me to change it?  While &#8220;To The Point&#8221; was catchy and fun, it didn&#8217;t get across what I wanted out of my practice.  I found myself attracting patients who wanted me to &#8220;fix them.&#8221;  And while this may be how biomedicine works with its surgeries, medications and other miscellaneous therapies, this isn&#8217;t how Chinese medicine works.  I like to see Chinese medicine as a way to remind your body how to function healthfully.  I am merely the tutor or mentor for your body.</p>
<p>So I would go along day after day helping people fix their health problems, but as soon as their symptoms disappeared, so would they.  They would only return once their symptoms returned.  And this is completely understandable.  Our model of healthcare in our society is based on an emergency system &#8211; if something&#8217;s broken, you fix it and go on with your life.</p>
<blockquote><p><strong><em><span style="color: #0000ff;">In Chinese medicine, the model is to prevent things from breaking in the first place.  And, if something does happen to break, you fix it and make sure it never breaks again.</span></em></strong></p></blockquote>
<p> I wanted to inspire in people the desire to be more than just symptom-free (pretty catchy slogan there, huh?)!  I no longer felt like my business name was getting the point I wanted to get across to my patients.  So, I changed it.  It was a little scary since my old name was just starting to get out there and known, but I felt strongly enough about my purpose, that it was a must.  </p>
<p>I became <span style="color: #0000ff;"><strong><a title="Thrive Acupuncture website" href="http://www.thriveacupuncture.org/blog.html" target="_blank">Thrive Acupuncture</a></strong></span>, and I must say, I love it!  I love helping people become the healthiest they can be, and you know what? I&#8217;ve got many patients now who have made the choice to continue treatment with me, even though their symptoms are gone, to make sure that they feel their best!  There are still those who just want the band-aid, and I treat them, and I love working with them, and I love seeing them feel good, but my true passion is in helping people to <strong><span style="color: #ff6600;"><em>THRIVE</em></span></strong>!</p>
<p>I can&#8217;t wait to blog with you all about Chinese medicine and how it works!  If you have any specific questions about chronic disease, auto-immune disorders (or anything else!) and Chinese medicine on here, <em><strong><span style="color: #0000ff;">please ask away and we&#8217;ll get those answered!</span></strong></em></p>
<p><span style="color: #0000ff;"><span style="color: #0000ff;"><strong>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</strong></span></span></p>
<p><strong><em><span style="color: #ff6600;">This Friday, we will be posting a follow –up Chinese Medicine post regarding the Five Elements and some discussion on a recent article about applying those elements.</span></em></strong></p>
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		<title>Lupus and men: Dr. Oz is making an office call soon~</title>
		<link>http://mylifeworkstoday.com/2010/01/15/lupus-and-men-dr-oz-is-making-an-office-call-soon/</link>
		<comments>http://mylifeworkstoday.com/2010/01/15/lupus-and-men-dr-oz-is-making-an-office-call-soon/#comments</comments>
		<pubDate>Fri, 15 Jan 2010 19:29:38 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Coping]]></category>
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		<category><![CDATA[Men]]></category>
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		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=717</guid>
		<description><![CDATA[I received an email from Kathy Casey, Executive Director of the Lupus Foundation of America -Pacific NW Chapter letting me know about an event that I want to pass along to all of you: “Hello, We received an email from our National office about The Dr. Oz Show featuring men and lupus. It will be [...]]]></description>
			<content:encoded><![CDATA[<p>I received an email from <strong><span style="color: #0000ff;">Kathy Casey</span></strong>, Executive Director of the Lupus Foundation of America -<strong><span style="color: #0000ff;">Pacific NW Chapter</span> </strong>letting me know about an event that I want to pass along to all of you:</p>
<p>“Hello,</p>
<p>We received an email from our National office about The <strong><span style="color: #0000ff;">Dr. Oz Show</span></strong> featuring <strong><em><span style="color: #ff6600;">men and lupus</span></em></strong>. It will be airing on Monday, Jan 18, 2010. In Seattle you can watch this show on KOMO4 TV at 3:00pm. <strong><span style="color: #ff6600;">In Portland, it is aired on ABC 2 KATU 3:00 PM and <span style="color: #ff6600;">8</span>:00 PM on KATU-DT2 (DTV Channel 2-2)<span style="color: #ff6600;"> <span style="color: #000000;">[Dr. Oz link has incorrect time]</span></span></span><span style="color: #000000;">.</span></strong><strong> </strong></p>
<p>Please check this link: <a href="http://www.doctoroz.com/find-station" target="_blank"><strong>http://www.doctoroz.com/find-station</strong></a> to watch show timings in your areas.”</p>
<p>After watching the show you have more questions or want to know about resources to learn more about living with lupus, the national LFA website does offer archived transcripts from their webchats on<strong><a title="LFA Nat'l website: Dr. Dooley" href="http://www.lupus.org/webmodules/webarticlesnet/templates/new_community.aspx?articleid=2561&amp;zoneid=91" target="_blank"> Men and lupus</a></strong>,  <a title="LFA Nat'l website: Dr. Grossman" href="http://www.lupus.org/webmodules/webarticlesnet/templates/new_communitywebchats.aspx?articleid=1918&amp;zoneid=93" target="_blank"><strong>M</strong><strong>en&#8217;s health and lupus</strong></a><strong> </strong>and <a title="LFA Nat'l website: Dr. Lahita" href="http://www.lupus.org/webmodules/webarticlesnet/templates/new_community.aspx?articleid=588&amp;zoneid=91" target="_blank"><strong>L</strong><strong>upus in men</strong></a>.  They also have <strong><a title="LFA Nat'l website" href="http://www.lupus.org/webmodules/webarticlesnet/templates/new_communityboards.aspx?articleid=1305&amp;zoneid=98" target="_blank">community message boards</a></strong> where ongoing discussions and an <strong><a title="LFA Nat'l website" href="http://www.lupus.org/webmodules/webarticlesnet/templates/new_communityboards.aspx?articleid=437&amp;zoneid=98" target="_blank">Ask The Expert</a></strong> link.   Our PNW LFA Chapter will also field your calls and emails to receive further information or materials.  If you have more specific questions about living with lupus  in Oregon, contact us here and I will connect you with local resources to fit your situation.</p>
<p>Of course, there are many other amazing lupus organizations on the internet (for example, <a title="Alliance for Lupus Research (ALR)" href="http://www.lupusresearch.org/" target="_blank"><strong>research and advocacy</strong></a><strong> </strong>and<strong> </strong><a title="S.L.E. Foundation - NY" href="http://www.lupusny.org/" target="_blank"><strong>education,community-building and diversity</strong></a>)  and several bloggers who also offer their suggestions and stories.  <strong><em><span style="color: #0000ff;">As always, recognize that nothing can take the place of your physician and we strongly recommend that you take all information you read carefully.</span></em></strong></p>
<blockquote><p><strong><em><span style="color: #ff6600;">Researching and reading is important in helping us cope with our illnesses, but always speak with your medical professional before implementing anything you come across.  Best intentions can still do a great deal of harm.</span></em></strong></p></blockquote>
<p>We don’t often think about men living with an illness and it is important that we learn from their experiences, as well.  Whether you’re a fan of Dr. Oz or not, I’m just glad he’s putting the discussion out there, giving us more opportunities to begin asking the question:</p>
<p><span style="color: #0000ff;"><span style="text-decoration: underline;"><a title="WebMD Lupus in Men video &amp; men's resources" href="http://www.webmd.com/video/when-men-have-lupus" target="_blank"><strong><em>What is lupus</em></strong></a></span><strong><em>?  </em></strong><span style="color: #000000;">(Sorry for the ads, but the video is a quick and informative source to get the gist)</span></span></p>
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		<title>Making Connections (Part One)</title>
		<link>http://mylifeworkstoday.com/2009/11/05/making-connections-part-one/</link>
		<comments>http://mylifeworkstoday.com/2009/11/05/making-connections-part-one/#comments</comments>
		<pubDate>Thu, 05 Nov 2009 21:25:20 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Announcements]]></category>
		<category><![CDATA[Books]]></category>
		<category><![CDATA[Chronic Illness]]></category>
		<category><![CDATA[Communication]]></category>
		<category><![CDATA[Coping]]></category>
		<category><![CDATA[Diagnosis]]></category>
		<category><![CDATA[Education and Skill Building]]></category>
		<category><![CDATA[Events]]></category>
		<category><![CDATA[Local Resources]]></category>
		<category><![CDATA[Lupus]]></category>
		<category><![CDATA[MLWT]]></category>
		<category><![CDATA[Oregon]]></category>
		<category><![CDATA[Personal Stories]]></category>
		<category><![CDATA[Self-Care]]></category>
		<category><![CDATA[Social Support]]></category>
		<category><![CDATA[Strategies]]></category>
		<category><![CDATA[Treatment Approaches and Perspectives]]></category>
		<category><![CDATA[Washington]]></category>
		<category><![CDATA[despite lupus]]></category>
		<category><![CDATA[lupus oregon]]></category>
		<category><![CDATA[oregon lupus]]></category>
		<category><![CDATA[portland oregon lupus]]></category>
		<category><![CDATA[sara gorman]]></category>

		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=607</guid>
		<description><![CDATA[“My life has a great set of characters; I just haven’t figured out the plot.”                                                                                                     ~Ashleigh Brilliant   I recently had the opportunity to work with a client in a coaching capacity, unrelated to lupus. She called me to help her objectively evaluate what her priorities are and chunk them into an achievable action [...]]]></description>
			<content:encoded><![CDATA[<p>“<strong><em><span style="color: #0000ff;">My life has a great set of characters; I just haven’t figured out the plot</span></em></strong>.”</p>
<p>                                                                                                    ~<strong><a title="More about Ashleigh" href="http://www.ashleighbrilliant.com/" target="_blank">Ashleigh Brilliant</a></strong></p>
<p> </p>
<p>I recently had the opportunity to work with a client in a coaching capacity, unrelated to lupus. She called me to help her objectively evaluate what her priorities are and chunk them into an achievable action plan that she will follow through with.  She actually knows everything she needs to do, but, because she over thinks everything,  nothing was getting done.  That habit of thinking things to death leads her to feeling to “overwhelmed” and having me there to go through the process with her, she tells me, always energizes her to accomplish her goals.  It isn’t because I have magic powers or specialized knowledge that things get done or even the financial incentive to be paying me to join her.  What is truly happening is that she is with someone who she can talk to about her goals, her thoughts about how to get her jobs done and have someone there to make it fun.  The fact that I do organizing and small business administrative support work helps, but it is just the opportunity to team up that brings in that energy.  She usually follows up our sessions with an email telling me how her “Maria fix” is still lingering and that makes me feel great to know I’ve helped. </p>
<p>While working with her on taking a look at what she already does do and knows, I gained some insight myself on how I should also be resisting the urge to think too much and simply work with I already do and know about my health.  In the beginning of our adjustments to all the new health-related symptoms (even when we’ve lived with illness for awhile), we have a sense of urgency in learning as much as we can about particular symptoms and how they will affect our lives.  Sometimes that urgency can get carried away and we tend to forget that our gut instincts have done an amazing job already in evaluating the ‘data’, yet we get too distracted to listen to what our intuition is telling us.</p>
<p><span style="color: #0000ff;"><strong>Without exact medical science and much public awareness, lupus is a pretty solitary journey</strong></span>.  We share our lives with others, but only we personally understand what lupus is about.  Even among a group of people with lupus, you will find a wide diversity in diagnosis, support network, symptoms, economic status, education, emotions, behaviors, goals and so forth.  The importance of having trust for our own judgments can sometimes be dismissed by family, friends, doctors and ourselves.  <strong><span style="color: #0000ff;">I know I seek out more and more information when trolling the blogs, bulletin boards, websites and social networking sites, convinced that I’ve missed something.  Eventually, I realize that I am missing something&#8230; my own instincts about what works for me and trusting what I already know</span>.</strong></p>
<p>I believe that I have learned the most from individuals who are just beginning their life with illness, mainly because I suspect that their use of intuition is most acute.  Since we haven’t accumulated the reams of paper on every topic yet, our need to understand what is happening still includes a sense of openness to learning about ourselves.  Every situation is different and talking with others who are jumping on board the “L” train offers me many options to do things better, easier, quicker and with more self-forgiveness —despite how I had already learned those lessons many times over.  <strong><span style="color: #0000ff;">So, why do I keep listening to the same old recommendations and encouragements if I already know I need to do them?  What makes me think that visiting a chronic guru, who tells me the same thing I read from a book, will change the fact that I’m not doing it?  Why does this client achieve so much from me helping her do what she really could do for herself?</span></strong></p>
<p>If you look more closely, you will see that the many bloggers and writers out there are not <strong><span style="color: #0000ff;"><em>cured</em> </span></strong>nor have they achieved enlightenment nor sainthood from their struggles.  <strong><span style="color: #ff6600;">Indeed, they are doing just what we all are doing—the best they can, <em>each and every day</em></span></strong>.  Yet, with all the name recognition and glitter, it is easy to assume that they are different than we are, better off than we are, stronger than we are, and so on.  We flock to them for information that we obviously are missing, otherwise we would be doing and feeling better about our illnesses, right?  What they offer really isn’t wisdom about living with illness, just as what I offer my clients isn’t rocket science.  What is really being offered is simply ‘opportunity’.</p>
<blockquote><p><strong><em><span style="color: #ff6600;">When we take in too much information or create too many options, we lose our way because our brains are wired to only be able to process a certain amount of information at a time.  That is why we are hearing how multi-tasking is actually less effective in getting jobs done well.  Sometimes, we need a ‘tour guide’ to get us around our own thoughts and that is all I do for clients</span></em></strong>. </p></blockquote>
<p><strong><span style="color: #0000ff;">The opportunity to share in a dialogue of what is most pressing in our lives, like living with illness, is out there and it benefits us to occasionally invest in participating so that we can apply all that information we’re spending hours accumulating.</span></strong>  Maybe investing on one topic or one experience is all you need and that may just open the dam for more energy and inspiration.  You may share a similar thought through a “tweet” on Twitter or some mutual friends on Facebook.  One day you may be doing well with lupus and the next day you find yourself needing to vent to someone who ‘knows’.  The value in connecting with others, reading what others write and listening to others’ life experiences isn’t just to dwell on illness— it is to celebrate the rest of those parts that we are made of—<span style="color: #ff6600;"><strong><em>one step or one day at a time</em></strong></span>.</p>
<p><strong><span style="color: #0000ff;">~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</span></strong></p>
<p><strong><span style="color: #0000ff;"><span style="color: #0000ff;"><span style="color: #ff6600;">This is part one of a two part introduction to our current book discussion</span><em>.  <span style="color: #000000;">This month we are talking about</span></em> Despite Lupus: How To Live Well With Lupus<em> <span style="color: #000000;">with the</span> author Sara Gorman.  <span style="color: #000000;">We encourage you to pick up the book , visit her <a title="Sara's website" href="http://despitelupus.blogspot.com/" target="_blank">website</a>, learn more about her in our <a title="May 2009 Lupus Awareness Event" href="http://mylifeworkstoday.com/2009/05/31/our-voices-for-lupus-awareness-sara-finds-her-way-and-shares-her-story-despite-lupus/" target="_blank">May post</a> or read <a title="MLWT's Book Review of Despite Lupus" href="http://mylifeworkstoday.com/2009/06/23/a-new-lupus-book-that-speaks-from-the-heart/" target="_blank">our review of her book</a>.</span></em><span style="color: #000000;"> </span></span></span></strong></p>
<p><strong><span style="color: #0000ff;"><span style="color: #0000ff;"><span style="color: #ff6600;">Part Two will be posted tomorrow </span><em>that will have Sara&#8217;s introduction for the discussion group already available on the <a title="MLWT Book Dicussion Group" href="http://www.shelfari.com/search/groups?Keywords=MLWT%20Book%20Discussion%20Group" target="_blank">Shelfari.com</a> book group under</em> &#8220;<span style="color: #ff6600;">MLWT Book Discussion Group&#8221;</span><em>.</em></span></span></strong></p>
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		<title>National Invisible Chronic Illness Awareness Week 2009</title>
		<link>http://mylifeworkstoday.com/2009/09/14/national-invisible-chronic-illness-awareness-week-2009/</link>
		<comments>http://mylifeworkstoday.com/2009/09/14/national-invisible-chronic-illness-awareness-week-2009/#comments</comments>
		<pubDate>Mon, 14 Sep 2009 22:56:53 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Advocacy]]></category>
		<category><![CDATA[Announcements]]></category>
		<category><![CDATA[Chronic Illness]]></category>
		<category><![CDATA[Communication]]></category>
		<category><![CDATA[Coping]]></category>
		<category><![CDATA[Diagnosis]]></category>
		<category><![CDATA[Events]]></category>
		<category><![CDATA[Lupus]]></category>
		<category><![CDATA[MLWT]]></category>
		<category><![CDATA[Oregon]]></category>
		<category><![CDATA[Personal Stories]]></category>
		<category><![CDATA[Resources]]></category>
		<category><![CDATA[Social Support]]></category>
		<category><![CDATA[Treatment Approaches and Perspectives]]></category>
		<category><![CDATA[Washington]]></category>
		<category><![CDATA[invisible chronic illness]]></category>
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		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=584</guid>
		<description><![CDATA[Here we go! Monday, September 14th is the beginning of National Invisible Chronic Illness Awareness Week 2009  and there will a lot of great people out there offering a great deal of information, resources, insight and stories addressing life living with an illness that isn&#8217;t easily seen by those around us.  Heck, sometimes we don&#8217;t see [...]]]></description>
			<content:encoded><![CDATA[<p style="text-align: center;"><img class="size-full wp-image-586 aligncenter" title="IIWK09" src="http://mylifeworkstoday.com/wp-content/uploads/2009/10/IIWK091.gif" alt="IIWK09" width="200" height="200" /></p>
<p><span style="font-size: small;"><em><strong><span style="FONT-FAMILY: Verdana; COLOR: blue">Here we go!</span></strong></em></span></p>
<p><span style="FONT-FAMILY: Verdana; COLOR: black"><span style="font-size: small;">Monday, September 14<sup>th</sup> is the beginning of <strong><span style="FONT-FAMILY: Verdana"><a title="Official Invisible Illness Awareness Week website" href="http://invisibleillnessweek.com/" target="_blank">National Invisible Chronic Illness Awareness Week 2009</a></span></strong>  and there will a lot of great people out there offering a great deal of information, resources, insight and stories addressing life living with an illness that isn&#8217;t easily seen by those around us.  Heck, sometimes we don&#8217;t see it either and that will be included somewhere I&#8217;m sure. (Maybe even here!)</span></span></p>
<p><span style="font-size: small;"><span style="FONT-FAMILY: Verdana; COLOR: black">This year, I&#8217;m going to be visiting as many of these amazing people as I can and will post some thoughts that stem from what I&#8217;m reading &#8211; which is what this week is all about.  </span><strong><span style="FONT-FAMILY: Verdana; COLOR: blue">To tell our stories, but to listen, too&#8230;and that sometimes offers more help to each other than we realize.</span></strong><span style="FONT-FAMILY: Verdana; COLOR: black"> </span></span></p>
<p><span style="FONT-FAMILY: Verdana; COLOR: black"><span style="font-size: small;">For a complete line up of what this week has in store, including a </span><a title="Seminar Information" href="http://invisibleillnessweek.com/?page_id=3" target="_blank"><span style="font-size: small;"><strong><span style="FONT-FAMILY: Verdana; COLOR: blue">virtual conference</span></strong><span style="color: #2583ad;"> </span></span></a><span style="font-size: small;"> hosting some great speakers (including a few MLWT colleagues) via <strong><span style="FONT-FAMILY: Verdana"><a title="their website" href="http://www.blogtalkradio.com/" target="_blank"><span style="color: #2583ad;">Blog Talk Radio</span></a></span></strong>.  Since all of the shows are recorded and archived, you can catch the presentations when the time is right for you. </span></span></p>
<p><span style="font-size: small;"><em><strong><span style="FONT-FAMILY: Verdana; COLOR: blue">Don&#8217;t miss the amazing week ahead</span></strong></em><span style="FONT-FAMILY: Verdana; COLOR: black"> &#8211; we guarantee there is going to be something for everyone through this wonderful event.  </span><strong><span style="FONT-FAMILY: Verdana; COLOR: #ff6600">Lisa Copen and everyone else involved with the ongoing coordination of this incredible resource deserves a huge round of applause.</span></strong><span style="FONT-FAMILY: Verdana; COLOR: black">  You&#8217;ll soon see why.</span></span></p>
<p><span style="font-size: small;"><strong><span style="FONT-FAMILY: Verdana; COLOR: blue">~~~~~~~~~~~~~~~~~~~~~~~~~~~~</span></strong></span></p>
<p><span style="font-size: small;"><span style="FONT-FAMILY: Verdana; COLOR: black">* </span><strong><span style="FONT-FAMILY: Verdana; COLOR: #ff6600">MLWT note</span></strong><strong><span style="FONT-FAMILY: Verdana; COLOR: black">:</span></strong><span style="FONT-FAMILY: Verdana; COLOR: black">  As you may have noticed, there have been some changes occur here on the blog, including the archives link- which isn&#8217;t working right now.  We have some behind the scenes work going on and, unfortunately, it will be during this important event.  We will try to minimize any interference so that you don&#8217;t miss out on any new information we pick up during the week, in case you miss it.      </span><strong><em><span style="FONT-FAMILY: Verdana; COLOR: blue">Thanks for your patience!</span></em></strong></span></p>
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		<title>A new lupus book that speaks from the heart</title>
		<link>http://mylifeworkstoday.com/2009/06/23/a-new-lupus-book-that-speaks-from-the-heart/</link>
		<comments>http://mylifeworkstoday.com/2009/06/23/a-new-lupus-book-that-speaks-from-the-heart/#comments</comments>
		<pubDate>Tue, 23 Jun 2009 22:29:20 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Announcements]]></category>
		<category><![CDATA[Behaviors and Patterns]]></category>
		<category><![CDATA[Books]]></category>
		<category><![CDATA[Chronic Illness]]></category>
		<category><![CDATA[Coping]]></category>
		<category><![CDATA[Diagnosis]]></category>
		<category><![CDATA[Education and Skill Building]]></category>
		<category><![CDATA[Events]]></category>
		<category><![CDATA[Local Resources]]></category>
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		<category><![CDATA[portland oregon lupus]]></category>
		<category><![CDATA[sara gorman]]></category>

		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=540</guid>
		<description><![CDATA[  When facing my lupus diagnosis, I sought out many books covering medical terms, confusing symptoms, current and potential treatment options &#8211; all to quench my thirst for conquering this disease single-handedly.  Early on, I didn&#8217;t recognize myself as a part of a medial team or a community.  Basically, my attempts to control my illness [...]]]></description>
			<content:encoded><![CDATA[<p><img class="alignleft size-full wp-image-539" title="Despite lupus" src="http://mylifeworkstoday.com/wp-content/uploads/2009/10/Despite-lupus1.jpg" alt="Despite lupus" width="151" height="226" /> </p>
<p>When facing my lupus diagnosis, I sought out many books covering medical terms, confusing symptoms, current and potential treatment options &#8211; all to quench my thirst for conquering this disease single-handedly.  Early on, I didn&#8217;t recognize myself as a part of a medial team or a community.  Basically, <strong><span style="color: #ff6600;">my attempts to control my illness meant shutting off any communication that didn&#8217;t offer me any sense of personal control</span>.</strong> </p>
<p>Last month, I had the opportunity to review a new book on lupus that I believe, after reading it twice, would have saved me some valuable time, tears and energy if it were around when I first started my adjustment process in learning to live with illness.</p>
<p>The book is entitled <em><strong><span style="color: #0000ff;">Despite Lupus:  How To Live With A Chronic Illness</span></strong></em> (Four-legged Press, 2009) and written by <strong><a title="About Sara" href="http://despitelupus.com/about-sara.html" target="_blank">Sara Gorman</a></strong>, who authors a <a title="Sara's blog Despite Lupus" href="http://despitelupus.blogspot.com/" target="_blank"><strong>blog</strong></a> under the same name.  I have been reading Sara&#8217;s posts for over a year now and have always felt a connection to her perspective on living with lupus by making self-supporting choices in living well.  When I received her book, I was thrilled to find the same tone and presence in her book as I&#8217;ve enjoyed on her blog.  She offers a comfortable blend of approaches including a ‘think-out-loud&#8217; way of sharing her own personal experiences in adjusting to lupus and a casual, supportive style covering some practical tips, exercises, tools and questions as if you both (reader and Sara) are simply chatting over a cup of coffee.</p>
<p>Her book doesn&#8217;t focus on the medical information that can sometimes overwhelm us- especially early on in our adjustment process.  It is important to learn as much as we can about how our bodies work/don&#8217;t work, what our treatment options are/aren&#8217;t and what we can do personally to manage our symptoms.  However, coping and adapting to illness is complicated and requires addressing some of the emotional and behavioral choices or decisions we will face along the way.  This is where Sara&#8217;s book shines ~<span style="color: #0000ff;"> </span><strong><span style="color: #0000ff;">its mission is to encourage the reader to look at their own personal roles in defining their lives with lupus and respecting their physical needs necessary to make their lives outside of lupus as fulfilling as they wish them to be</span>. </strong> She reinforces this by using the theme of communication throughout the book and shows how crucial it is in creating those fulfilling lives.  I found her chapter on communicating with doctors particularly valuable, as I believe the relationship between patient and physician is key in establishing healthy adjustments to and better choices regarding lupus early on.</p>
<p><strong><em><span style="color: #0000ff;">Despite Lupus</span></em></strong> offers a great deal of information in a narrative style, rather than more of a workbook or structured format.   At first, it was difficult for me to see this as a ‘how-to&#8217; book, simply because I am so used to other books leading me through steps that I could easily skip and exercises that I could blindly avoid.  Whether she meant to or not, her book&#8217;s format challenged me to read through, lulled by the sense that I&#8217;m learning from someone who &#8220;knows&#8221; what having lupus is like, only to discover that I had stumbled upon yet another skill-building technique I thought I had mastered the art of snubbing.  After a decade with lupus, I had grown jaded at reading the same tips and suggestions over and over, no matter how valuable I knew they truly were in coping.  A passage from Sara&#8217;s book perfectly describes my lupus moments or ‘fits&#8217; I experience even today:</p>
<blockquote><p><strong>&#8221; <span style="color: #0000ff;">&#8230;when life is forced upon you, without your consent, as your chronic illness has been, you panic.  You rush to defend yourself against the intrusion, fighting to preserve the comfort and control you&#8217;ve always known.</span></strong><span style="color: #0000ff;"> </span><strong> </strong><span style="color: #ff6600;"><em><strong>Not only are you seizing the past, you&#8217;re grasping the future</strong></em>.  </span><em><strong><span style="color: #ff6600;">You believe your plan is the only one that will lead to your desired destination, and anything else is a ruse.</span> &#8220;</strong></em>    (Page 85) </p></blockquote>
<p>I have several books on lupus, or chronic illness in general, that cover the emotional and behavioral challenges we face within our self-concepts (or identities) when dealing with illness.  <strong><span style="color: #0000ff;">Sara delivers suggestions and steps in a way that gently encourages the reader to consider them, because they have worked for her</span>.</strong>  I found that I was much more open to actually do some of them the second read through (I&#8217;m just extra stubborn), even when I knew they were coming up.  She offers them as a friend, not a guru, and that helps me remain open to trying.</p>
<p>Sometimes hearing other peoples&#8217; tales about their lupus experiences can be frightening, deeply saddening and leave us more locked into refusing change than ever before.  I can assure you that Sara&#8217;s book provides clear pointers for newly-diagnosed patients and some valuable reminders to those of us already well-versed at lupus.  <em><strong><span style="color: #ff6600;">By learning more about her, she inspires us to step back and consider possibilities, communicate more clearly who we are to ourselves and others &#8211; and to define our lives to be well worth living, despite our lupus.</span></strong></em></p>
<p><span style="color: #0000ff;"><strong>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</strong></span></p>
<p><span style="color: #0000ff;"><strong>October 23, 2009 Update:</strong></span></p>
<p><span style="color: #000000;"><span style="color: #ff6600;"><strong><em>Sara will be joining in on our November book discussions!</em></strong> </span> We will be on the Ning Communities of Ardent Celebrations and LupusMCTD, WeAreLupus.org and Shelfari.com.  We will also put up a post on our website November 1st  introducing the discussions , so that you can comment about the book here if you prefer.  Sara will be doing the same on her website.  We look forward to you joining  us~ </span></p>
<p><span style="color: #000000;"><strong><span style="color: #0000ff;">~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</span></strong></span></p>
<p>I was not paid for this review. Sara sent me a copy of her book for review. The opinions expressed are all mine and I thank Sara for allowing me this gracious opportunity.</p>
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		<title>Every Day is Father’s Day!</title>
		<link>http://mylifeworkstoday.com/2009/06/22/every-day-is-father%e2%80%99s-day/</link>
		<comments>http://mylifeworkstoday.com/2009/06/22/every-day-is-father%e2%80%99s-day/#comments</comments>
		<pubDate>Mon, 22 Jun 2009 22:46:14 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Challenge and Opportunity]]></category>
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		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=534</guid>
		<description><![CDATA[I had some trouble with my computer beginning Thursday and throughout this weekend, so I just wasn&#8217;t able to post a Happy Father&#8217;s Day in time~ I do hope all you guys out there, who are father&#8217;s, did enjoy yourselves along with those who love you. Always wishing you well~ I would like to put [...]]]></description>
			<content:encoded><![CDATA[<p>I had some trouble with my computer beginning Thursday and throughout this weekend, so I just wasn&#8217;t able to post a Happy Father&#8217;s Day in time~ <em><strong><span style="color: #0000ff;">I do hope all you guys out there, who are father&#8217;s, did enjoy yourselves along with those who love you</span>.</strong></em> Always wishing you well~</p>
<p>I would like to put up the information offered through the<strong> </strong><a title="LFA's Men's Health Month Focus" href="http://www.lupus.org/newsite/pages/mens-health-month.htm" target="_blank"><strong>Lupus Foundation of America</strong></a> (<strong>LFA</strong>) and a few others about men living with lupus that might be of interest. </p>
<p><em><strong><span style="text-decoration: underline;">LFA links:</span></strong></em></p>
<p><strong><a title="LFA Lupus in men" href="http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutindividualized.aspx?articleid=109&amp;zoneid=18" target="_blank">Men and Lupus</a></strong></p>
<p><strong><a title="LFA Women &amp; men with Lupus compared" href="http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutindividualized02.aspx?articleid=405&amp;zoneid=86" target="_blank">How Lupus Differs in Men</a></strong></p>
<p><strong><a title="LFA June 2009 with Dr. Dooley" href="http://www.lupus.org/webmodules/webarticlesnet/templates/new_community.aspx?articleid=2561&amp;zoneid=91" target="_blank">Men and Lupus Webchat</a></strong></p>
<p><em><strong><span style="text-decoration: underline;">Mens Support Links</span></strong></em><span style="text-decoration: underline;"> </span>(alternative to the LFA)<em><strong>:</strong></em></p>
<p><strong><a title="Ad Council new Lupus Campaign" href="http://www.couldihavelupus.gov/speakout-discussion.php?t=144" target="_blank">Could I Have Lupus? Forum</a></strong></p>
<p><strong><a title="Focusing on Men with lupus" href="http://www.lupiebin.com/men.htm" target="_blank">LupieBin Forum (UK)</a></strong></p>
<p><em><strong><span style="text-decoration: underline;">Misc links:</span></strong></em></p>
<p><strong><a title="Everydayhealth.com" href="http://www.everydayhealth.com/lupus/lupus-and-gender.aspx" target="_blank">Lupus and Gender</a> </strong></p>
<p><a title="WebMD.com" href="http://lupus.webmd.com/news/20070628/mens-lupus-treatment-fertility-woes" target="_blank"><strong>Fertility and Lupus Treatments</strong> </a></p>
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		<title>Our Voices For Lupus Awareness:  Sara finds her way and shares her story Despite Lupus</title>
		<link>http://mylifeworkstoday.com/2009/05/31/our-voices-for-lupus-awareness-sara-finds-her-way-and-shares-her-story-despite-lupus/</link>
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		<pubDate>Sun, 31 May 2009 21:13:20 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Books]]></category>
		<category><![CDATA[Challenge and Opportunity]]></category>
		<category><![CDATA[Chronic Illness]]></category>
		<category><![CDATA[Coping]]></category>
		<category><![CDATA[Diagnosis]]></category>
		<category><![CDATA[Events]]></category>
		<category><![CDATA[Guest Blogger]]></category>
		<category><![CDATA[Labs & Testing]]></category>
		<category><![CDATA[Lupus]]></category>
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		<category><![CDATA[Oregon]]></category>
		<category><![CDATA[Personal Stories]]></category>
		<category><![CDATA[Social Support]]></category>
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		<category><![CDATA[Treatment Approaches and Perspectives]]></category>
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		<category><![CDATA[sara gorman]]></category>
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		<category><![CDATA[wellness]]></category>

		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=473</guid>
		<description><![CDATA[I am so excited to present my blogging friend Sara as our final Guest Blogger for MLWT&#8217;s &#8221; Our Voices For Lupus Awareness &#8221; event this May.  I have been reading her blog for more than a year now and she shares a perspective towards living well that is what MLWT represents&#8230;stepping towards a life that consists [...]]]></description>
			<content:encoded><![CDATA[<p><strong><em>I am so excited to present my blogging friend </em><span style="color: #ff6600;">Sara</span><em> as our final Guest Blogger for MLWT&#8217;s &#8221; </em></strong><a title="MLWT Guest Blogging Event" href="http://mylifeworkstoday.com/2009/05/01/guest-blogging-event-for-lupus-awareness-month/" target="_blank"><strong>Our Voices For Lupus Awareness</strong></a><strong> <em>&#8221; event this May.  I have been reading her blog for more than a year now and she shares a perspective towards living well that is what MLWT represents&#8230;stepping towards a life that consists of many things, with lupus being only one of them.</em></strong></p>
<p><img class="alignleft size-full wp-image-475" title="SaraGorman09" src="http://mylifeworkstoday.com/wp-content/uploads/2009/05/SaraGorman09.png" alt="SaraGorman09" width="202" height="185" /></p>
<p><strong><span style="color: #ff6600;">Sara Gorman</span></strong>, author of <strong><span style="color: #0000ff;">Despite Lupus: How to Live Well with a Chronic Illness</span></strong><em>, </em>talks about her new book and her experiences with systemic lupus:    </p>
<p><strong><span style="color: #0000ff;">What is the book about?</span> </strong></p>
<p><em><strong><span style="color: #ff6600;">Despite Lupus</span></strong> </em>outlines<em> </em>the steps I&#8217;ve taken to regain the health and wellness I lost due to years of struggling to overcome lupus. After my diagnosis at the age of 26, I refused to admit that my busy lifestyle and indomitable attitude were exacerbating my illness. It took four years before I realized that my strategy of pushing through the pain wasn&#8217;t working. In fact, it was ruining my chances for a long, productive life. Thus, I decided to stop fighting life, and start living it. I made it my top priority to start living well with my illness, doing everything I could to proactively make my life better. The book describes the steps I took to reach that goal.</p>
<p><strong><span style="color: #0000ff;">Why did I decide to write the book?</span></strong></p>
<p>Once I started seeing the physical and emotional benefits of the changes I was making &#8211; cutting back my hours at the office, postponing my plans for pregnancy to start a more aggressive drug therapy, and cutting off my hair (or what I had left of it), for example &#8211; I realized that I had a story to tell.</p>
<blockquote><p><em><strong><span style="color: #ff6600;">My life with lupus was improving and I was the one making it happen. It took a lot of patience, effort, and keen self-awareness, but it was worth it. I was suddenly enjoying life, not dreading it.</span></strong></em></p></blockquote>
<p>Since my diagnosis years earlier, I had been searching for a proven, proactive approach to dealing with lupus, but could never find anything. I was frustrated by the conflict of emotions I experienced &#8211; the feelings of vulnerability and desperation. I wanted to know, not only <span style="color: #ff6600;"><strong>why</strong> </span>I was experiencing these emotions, but <em>what</em> I could do to prevent them. Once I started to figure it out on my own, I wanted to enable others to do the same by documenting the steps I was taking to make that happen.</p>
<p><strong><span style="color: #0000ff;">What is the key to living well with a chronic illness?</span> </strong></p>
<p>There are several essential steps to living well, but the most critical thing is to admit that you&#8217;re worth the effort. <em><strong><span style="color: #ff6600;">You owe it to yourself to live well</span></strong></em> &#8211; in fact, you deserve it. For all too long, I was doing myself, my family and friends a disservice by ignoring my symptoms and pretending like lupus wasn&#8217;t affecting me. My body was literally falling apart, but I tried to act as if it wasn&#8217;t. Not only was I hurting myself, I was affecting those around me by not valuing myself enough to stay well.</p>
<p><strong><span style="color: #0000ff;">Do I still struggle to make good decisions to live well with lupus? </span></strong></p>
<p>You bet! Every day at 3:59pm, when I head up to my bedroom to take my 4:00pm nap, I think, &#8220;Why do I have to take a mid-day nap in order to make it through the rest of the day? No one else has to do this.&#8221; But, before I get too upset about it, I realize how wonderful it is that I&#8217;ve figured out a way to manage my fatigue. I used to lose my entire evenings to sheer exhaustion, but not anymore. By taking a measly hour and a half out of my day to rest, I can function like a normal human being for the remainder of the day. I get my evenings back and the chance to feel normal again &#8211; which is priceless.</p>
<p><img class="alignleft size-full wp-image-476" title="Despite lupus" src="http://mylifeworkstoday.com/wp-content/uploads/2009/05/Despite-lupus.jpg" alt="Despite lupus" width="151" height="226" /></p>
<p>Feel free to stop by my website, <a title="Sara's website" href="http://www.despitelupus.com/" target="_blank"><strong>www.despitelupus.com</strong></a> to read an excerpt of the book, check out a few reviews, and catch up on my blog. Hopefully, you&#8217;ll like what you see! The book is $19.95 plus shipping. Feel free to email me at <a href="mailto:sara@despitelupus.com"><strong>sara@despitelupus.com</strong></a> with questions. I look forward to hearing from you!</p>
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		<title>Our Voices for Lupus Awareness:  Jess will roam if she wants to</title>
		<link>http://mylifeworkstoday.com/2009/05/29/our-voices-for-lupus-awareness-jess-will-roam-if-she-wants-to/</link>
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		<pubDate>Fri, 29 May 2009 20:58:05 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Advocacy]]></category>
		<category><![CDATA[Challenge and Opportunity]]></category>
		<category><![CDATA[Coping]]></category>
		<category><![CDATA[Diagnosis]]></category>
		<category><![CDATA[Guest Blogger]]></category>
		<category><![CDATA[Lifestyle]]></category>
		<category><![CDATA[Lupus]]></category>
		<category><![CDATA[MLWT]]></category>
		<category><![CDATA[Oregon]]></category>
		<category><![CDATA[Personal Stories]]></category>
		<category><![CDATA[Social Support]]></category>
		<category><![CDATA[Travel]]></category>
		<category><![CDATA[Treatment Approaches and Perspectives]]></category>
		<category><![CDATA[Washington]]></category>
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		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=469</guid>
		<description><![CDATA[My life with lupus.  Hmmm, I&#8217;m not even sure what that means to me just yet.  Last year I began the journey to a lupus diagnosis. I&#8217;m not quite finished with the diagnosis, but we&#8217;re close.  Anyway, I&#8217;ll call it a journey since it started with a journey. Last year I took a girl&#8217;s trip [...]]]></description>
			<content:encoded><![CDATA[<p><strong><span style="color: #ff6600;">My life with lupus</span></strong>.  Hmmm, I&#8217;m not even sure what that means to me just yet. </p>
<p><em><strong><span style="color: #0000ff;">Last year I began the journey to a lupus diagnosis</span></strong></em>. I&#8217;m not quite finished with the diagnosis, but we&#8217;re close.  Anyway, I&#8217;ll call it a journey since it started with a journey.</p>
<p>Last year I took a girl&#8217;s trip with my closest friends.  7 days in Belize.  Leading up to the trip I&#8217;d not been well for months, and likely longer than that.  Low-grade fevers for years maybe, ramping up to extreme tightness and pain in my joints.  My hips in particular were getting worse.  A family history of early arthritis let me shrug, pop a few more Advil, and try some stretching exercises.  The pain interfered with work, sleep, and life in general, but I shrugged and kept going.  Until midway through my trip. </p>
<p>I realized one morning that none of my 3 girlfriends were literally struggling to get out of bed.  We were the same age, similar fitness levels, and my friends weren&#8217;t catching concerned looks from the tour guide as we scrambled up boulders in a water filled cave.</p>
<blockquote><p><em><strong><span style="color: #ff6600;">Did he catch my wince? Was it my gracelessness as I pulled myself up the rocks?  My quickness to tire?  By the midway point of the trip I was measuring my pain level at a 6 on a 10 scale, and teetering over into the 8 range at night as relayed in an email to my boyfriend back home.</span></strong></em></p></blockquote>
<p>An email where I promised to get it checked out when I got home.  Extreme fatigue a few weeks later finally led me to go to the doc to see if I had West Nile &#8211; a diagnosis my boyfriend had just received after a hike in a local state park.  Negative.  Within days my hand had swollen with a pinkie joint the size of a golf ball.  Gout? Trauma?  All ruled out, but finally with a combination of my fevers, exhaustion, and x-rays I had a referral to a rheumatologist.  Combined with a family history, and pretty distinct symptoms he seems pretty certain of the diagnosis.  I think.  I&#8217;m on a 10 month wait for a 3 month follow up.  That final test he wanted to check in October?  I&#8217;ll hear about the results in June. </p>
<p><strong><span style="color: #0000ff;">In the meantime I planned another trip for the last week of April</span></strong>.   This time with my boyfriend of 5 years.  A new kind of adventure travel for us. Again to Belize, his first trip out of the country, with a side jaunt to Guatemala.  New way of travel in many ways.  Me determined to avoid any flares caused by overdoing it, sun exposure, etc, and coming from a lower fitness base than the year before.  Him with a chronic kidney disease fearing food and waterborne illness and what it could do to a pair of kidneys that may only have 20 more years left as they are right now. We researched sun protective shirts and washes, invested in loads of sunscreen, borrowed a water filter although we were planning on traveling mostly in areas of safe water.  Our trip was planned to involve air conditioning, slightly less rustic rooms, and lots of cushion for rest days if needed.  <em><strong><span style="color: #ff6600;">I like to think that the planning allowed us to live in the moment during the trip</span>.</strong></em>  We had a blast.  Snorkeling, Mayan ruins, zip-lining, monkeys,memorable bus rides trying to decipher the local slang, and good times catching up with old friends.</p>
<p>Even better my boyfriend has caught my extreme case of wanderlust so I think we&#8217;ll try it again in the future.  The list of places is growing faster than we&#8217;re going!   No matter the diagnosis, I think that&#8217;s what we&#8217;ll do. <strong> <span style="color: #0000ff;">Research, plan, and go for it.  Seems like a great way to tackle a trip, or a diagnosis</span></strong><span style="color: #0000ff;">.</span></p>
<p><strong><span style="color: #0000ff;">~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</span></strong></p>
<p><strong><span style="color: #ff6600;">Jessica</span></strong><em> </em><em>is a 31 year old who dreams of travel to faraway places, loves to blog at  </em><strong><a title="Jessica's blog" href="http://notesfromthegardenspot.blogspot.com/" target="_blank">Notes from the Garden Spot of the World</a></strong>, <a title="Twitter.com" href="http://twitter.com/" target="_blank"><strong>Twitter</strong></a><strong> </strong><em>as</em> <strong><span style="color: #ff6600;">@gardenJess </span></strong><em>and read.  Her brand new kitten keeps her time occupied, as does her garden.  She welcomes new readers and new friends.</em></p>
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