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	<title>My Life Works Today!</title>
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	<link>http://mylifeworkstoday.com</link>
	<description>A Living, Learning and Lupus Network</description>
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		<title>So Much to Learn — So Little Time</title>
		<link>http://mylifeworkstoday.com/2010/08/23/so-much-to-learn-%e2%80%94-so-little-time/</link>
		<comments>http://mylifeworkstoday.com/2010/08/23/so-much-to-learn-%e2%80%94-so-little-time/#comments</comments>
		<pubDate>Tue, 24 Aug 2010 01:31:00 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Autoimmune Diseases & Syndromes]]></category>
		<category><![CDATA[Challenge and Opportunity]]></category>
		<category><![CDATA[Chronic Illness]]></category>
		<category><![CDATA[Communication]]></category>
		<category><![CDATA[Coping]]></category>
		<category><![CDATA[Identity]]></category>
		<category><![CDATA[Lupus]]></category>
		<category><![CDATA[Oregon]]></category>
		<category><![CDATA[Relationship-focused]]></category>
		<category><![CDATA[Social Support]]></category>
		<category><![CDATA[Treatment Approaches and Perspectives]]></category>
		<category><![CDATA[Washington]]></category>
		<category><![CDATA[Pacific Northwest]]></category>
		<category><![CDATA[PFAM]]></category>
		<category><![CDATA[wellness]]></category>

		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=1108</guid>
		<description><![CDATA[“What advice would you give, or what would you want non-chronically ill people to know about your illness and your life?” This question brought up something I hadn’t thought about in years.  Although a different type of situation, its point still holds true—at least I think it does—to what Leslie at Getting Closer To Myself [...]]]></description>
			<content:encoded><![CDATA[<p><span style="color: #0000ff;">“<strong><em>What advice would you give, or what would you want non-chronically ill people to know about your illness and your life</em></strong>?”</span></p>
<p>This question brought up something I hadn’t thought about in years.  Although a different type of situation, its point still holds true—at least I think it does—to what Leslie at <strong><a title="Leslie's blog" href="http://gettingclosertomyself.blogspot.com/" target="_blank">Getting Closer To Myself</a></strong>  is asking of us today in this edition of <strong><span style="color: #0000ff;">PFAM</span></strong>. </p>
<p>I remember an experience in my early twenties when applying for admission into a local university’s social work program.  The Dean of the school <strong><em><span style="color: #0000ff;">asked me how someone as young as I was could possibly know how to counsel “ &#8230;a single African American mother of four in her mid-thirties and without a high school diploma?”</span> </em></strong> </p>
<p>I am still Caucasian, but older and wiser.  At the time, I was floored by the question he put forth, as a means to justify why my admittance to the program was revoked once they discovered I wasn’t of Hispanic descent.  My first and last name, although of French origin, led them to think I was going to fit into their Affirmative Action camp.  I opted not to give that information when applying, because I wanted into their program based on my merits.  That, and I obviously didn’t fit the program anyway.</p>
<p>I’m not sure what was bothering me more.  Him trying to dance around the  reverse discrimination scenario we were facing regarding my ethnicity or the fact that this supposed professional and expert in social work was asking me how I could help another woman coming from another set of experiences that were <span style="color: #0000ff;"><em><strong>at least in the ball park</strong></em> </span>of my own?  From that very platform, I shot my answer back to him:</p>
<blockquote><p><strong><em><span style="color: #ff6600;">“I would say much better than the Caucasian male sitting in front of me covering his tail-end and without a uterus.”</span></em></strong></p></blockquote>
<p>As you may have guessed, I didn’t get accepted into the program and have never regretted it.  His question has stayed with me all these years due to his lack of true understanding regarding the human experience.</p>
<p><span style="color: #0000ff;"><strong>How can someone outside of our own skin expect another to fully appreciate all that we go through?  Is it our hopes that, if we are suffering, others must suffer right along side us?  Do we go through our lives seeking out relationships only with people who are just like us?  If so, is that really our goal?  If we only interact with people within our condensed series of experiences, how are we to ever be inspired, challenged or given any opportunities to leave our own, indelible marks on others’ lives?</strong></span></p>
<p>Some of us living with illness draw lines in the sand regarding who we bother talking to about things and those who we resent for not getting it.  We jump over these lines constantly, indicating that we, ourselves, don’t even know where we stand on the issue.  <strong><span style="color: #0000ff;">Are we ill or do we want to be considered “normal”?  Do we want people to help or be left alone and not treated like invalids? </span></strong></p>
<p>Our experiences with illness are on the same dimension as our experiences in life.  I personally don’t believe we are supposed to all go through the same things.  If you would leave “illness” out of it, how would you finish this sentence: “What I want you to know about my life so far is&#8230;”  My guess is that you would  lean more towards the positive,  if you consider yourself  the expert in your own life.</p>
<blockquote><p><strong><em><span style="color: #ff6600;">We are a collection of experiences that share a lot in common with each other, but it is those things that are uncommon between us that teach us the most about living.</span></em></strong></p></blockquote>
<p><strong><span style="color: #0000ff;">For those who are not living with illness, some day you might find yourselves in our shoes.  At that time, let’s talk.</span></strong> </p>
<p><strong><span style="color: #0000ff;">For those of you who are not living with illness, but live with or know someone who does, just talk.</span></strong></p>
<p><strong><span style="color: #0000ff;">For those of you who live with illness, ask yourselves what really matters most to you, then talk.</span> </strong></p>
<p><strong><span style="color: #0000ff;">For those of you who live with illness and feel like no one understands what you’re going through, you’re right.  So talk.</span></strong></p>
<p>I would never present myself as someone who knows exactly how to counsel anyone outside my own skin and I don’t think being there for someone means crawling inside of them and leading the way.   <strong><span style="color: #0000ff;">I think just walking beside them and knowing we’re both finding our own way along this lonely road is all any of us can really do</span></strong>.</p>
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		<title>A Picture Worth a Thousand Flares</title>
		<link>http://mylifeworkstoday.com/2010/08/16/a-picture-worth-a-thousand-flares/</link>
		<comments>http://mylifeworkstoday.com/2010/08/16/a-picture-worth-a-thousand-flares/#comments</comments>
		<pubDate>Tue, 17 Aug 2010 00:45:14 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Autoimmune Diseases & Syndromes]]></category>
		<category><![CDATA[Behaviors and Patterns]]></category>
		<category><![CDATA[Coping]]></category>
		<category><![CDATA[Health]]></category>
		<category><![CDATA[Lupus]]></category>
		<category><![CDATA[Oregon]]></category>
		<category><![CDATA[Outdoor Fun]]></category>
		<category><![CDATA[Personal Stories]]></category>
		<category><![CDATA[Self-Care]]></category>
		<category><![CDATA[Strategies]]></category>
		<category><![CDATA[Treatment Approaches and Perspectives]]></category>
		<category><![CDATA[Washington]]></category>
		<category><![CDATA[Work and Career]]></category>
		<category><![CDATA[Chronic Illness]]></category>
		<category><![CDATA[lupus oregon]]></category>
		<category><![CDATA[Pacific Northwest]]></category>

		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=1092</guid>
		<description><![CDATA[I’ve been around the block a bit when it comes to knowing what I should and should not do because of my lupus. (Note: the lower case “l”)  For over a decade, I have managed my living with illness fairly well and have been very lucky so far.  I have no complaints that are worthy [...]]]></description>
			<content:encoded><![CDATA[<p>I’ve been around the block a bit when it comes to knowing what I should and should not do because of my lupus. (Note: the lower case “l”)  For over a decade, I have managed my living with illness fairly well and have been very lucky so far.  I have no complaints that are worthy of the air time.</p>
<p>I live with lupus.  I work with and learn from people who are living with lupus or other illnesses that often share similar medications, experiences, doctors, and challenges.  I have a library of books, hundreds of files, materials from trainings and conferences, have a multitude of websites listed in my favorites, have worked directly with patients and health professionals, and have participated (at one time or another) in more than 12 social networking sites.  I have lived and breathed lupus and illness for many years, all the while discovering that there is <em><span style="color: #0000ff;"><strong>always</strong></span></em> more to learn.  One would think that I would be bursting at the seams with some common ‘lupus’ sense.  <strong><em><span style="color: #ff6600;">Apparently not</span></em></strong>.</p>
<p>Do any of you remember, when you were kids, the <strong><a title="Highlights website link" href="http://www.highlights.com/highlights-magazines-for-kids" target="_blank">Highlights® Magazine</a></strong>  you could find at the doctor or dentist office?  You may see them now, if you’re taking your own kids to their appointments.  In this <strong><a title="Highlights hidden pictures game link" href="http://www.highlightskids.com/GamesandGiggles/gamesArchive/hpTopArchive.asp" target="_blank">magazine (and now online)</a></strong> , there is an <a title="Highlights Hidden Pictures Google images" href="http://www.google.com/images?hl=en&amp;q=highlights+hidden+pictures&amp;um=1&amp;ie=UTF-8&amp;source=univ&amp;ei=QsdpTIfsJIXCsAOIiZnwBg&amp;sa=X&amp;oi=image_result_group&amp;ct=title&amp;resnum=1&amp;ved=0CC8QsAQwAA&amp;biw=1057&amp;bih=651" target="_blank"><strong>illustrated picture</strong> </a> where you are instructed to find a list of hidden items.  Some are tough to find, but others are right out in the open, thankfully.  I remember being pretty frustrated when I could not finding certain items, only to realize I had been looking at it the whole time.  This post, too,  is about things that appear one way on the surface, but when you look more closely, you will see things aren’t as they should be.</p>
<p><a href="http://mylifeworkstoday.com/wp-content/uploads/2010/08/Garden-21.jpg"><img class="alignnone" title="Gardening Goon" src="http://img697.imageshack.us/img697/5590/garden2z.jpg" alt="" width="320" height="240" /></a></p>
<p>On the surface, you might think that growing a garden and eating fresh vegetables are good things.  You might also think that I always make the right choices,  since I do health support services as a profession. If you look more closely, however, you will notice some big errors in judgment that I am ashamed to have made, both as that professional and as a lupus patient.  At my age, and at this stage of the game, there are no excuses. I know that you may not see some of the things I am about to mention.  This is where my personal accountability will come into play and I suspect there are many of you out there doing the same thing.  Let’s just put it all on the table right now. </p>
<p>This picture shows me out there harvesting &#8211; at noon, when the sun is at its highest.  I’m out there without sunscreen.  I’m wearing a top that, quite frankly doesn’t cover enough of me in any way shape or form (I really need to either tone up or toss it out.)  My mouth is usually wide open when I harvest the beans and peas, aggravating my symptoms similar to Sjogren’s.  According so some nutritionists, I’m surrounded by tomatoes, that are considered to have inflammatory properties and may cause some people with lupus more trouble than they’re worth.  Well, this person isn’t going without her tomatoes, otherwise her temper will show some inflammation.  It is something to consider, though, when you are trying to gain some management in your flares.</p>
<p><a href="http://mylifeworkstoday.com/wp-content/uploads/2010/08/Garden-3.jpg"></a><a href="http://mylifeworkstoday.com/wp-content/uploads/2010/08/Garden-3.jpg"><img class="alignnone" title="Still gooning" src="http://img339.imageshack.us/img339/20/garden3m.jpg" alt="" width="320" height="240" /></a></p>
<p>This picture emphasizes what you don’t see.  No hat to shade my face. No water bottle to stay hydrated.  No one helping me do the work.  No thermometer to show me that it was already in the 80’s.  No time out break – I know it’s a small space, but you’d be surprised how long it takes to water and harvest this little patch!  That leads me to my last point in this hidden picture that isn’t so hidden: I have no energy to keep standing, because the sun and heat are already getting to me.</p>
<p>The good thing about this goof up is that I can easily fix it.  Not all things about lupus are that easy to remedy.  I can get out there before 10 am or after 5 pm, when the sun begins to ease up.  I can take a little shower caddy out there with me including a water bottle, sunscreen (to reapply when needed), a little thermometer to check the temp, a light-weight T-shirt to have in case I’m out there longer than I should be, and hard candy to keep my salivary glands active and mouth closed.  I can get a hat that can hang around my neck to remind me to wear it.  I can get a little stool to put out there when I get a little dizzy.  I can ask my two daughters to take some time and help me, giving us a chance to be together and talk. </p>
<blockquote><p><strong><em><span style="color: #ff6600;">When we feel good, we forget.  When we hurt, we remember and curse ourselves for forgetting.</span></em></strong></p></blockquote>
<p> These pictures show how I only have myself to blame when ( <strong><span style="color: #0000ff;">not if </span></strong>) I feel like crap tomorrow.  Even with all my experience, I still struggle to keep my lupus hidden.  By bringing out my experience and knowledge about what I need to do doesn’t translate into being labeled as “sick” when I’m having good days.  When I’m not ‘at work’, I still need to be willing to acknowledge my responsibilities to my health.  Being able to be out there and by doing things <strong><span style="color: #0000ff;">right</span></strong> creates my chosen picture of health.  <strong><em><span style="color: #ff6600;">That is what helps keep things in the right perspective and me still growing</span></em></strong>.</p>
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		<title>Lupus makes the TV lineup tomorrow</title>
		<link>http://mylifeworkstoday.com/2010/08/05/lupus-makes-the-tv-lineup-tomorrow/</link>
		<comments>http://mylifeworkstoday.com/2010/08/05/lupus-makes-the-tv-lineup-tomorrow/#comments</comments>
		<pubDate>Thu, 05 Aug 2010 23:08:37 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Advocacy]]></category>
		<category><![CDATA[Family]]></category>
		<category><![CDATA[Health]]></category>
		<category><![CDATA[Lifestyle]]></category>
		<category><![CDATA[Local Resources]]></category>
		<category><![CDATA[Lupus]]></category>
		<category><![CDATA[Oregon]]></category>
		<category><![CDATA[Personal Stories]]></category>
		<category><![CDATA[Social Support]]></category>
		<category><![CDATA[Television and Radio]]></category>
		<category><![CDATA[Washington]]></category>
		<category><![CDATA[lupus awareness]]></category>
		<category><![CDATA[Portland]]></category>
		<category><![CDATA[wellness]]></category>

		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=1086</guid>
		<description><![CDATA[Have any of you noticed the increase in lupus talk happening in the media?  Lady Gaga, Snoop Dogg’s daughter, and John Stewart comparing lupus to the FOX News Network?  You don’t only have to search within the entertainment industry, either.  Last year, news about new potential pharmaceutical treatments on the verge of FDA approval were [...]]]></description>
			<content:encoded><![CDATA[<p><img class="aligncenter" title="S.L.E Foundation NY and Lupus LA " src="http://www.lupusny.org/sites/default/files/framework_logo.png" alt="" width="150" height="85" /></p>
<p>Have any of you noticed the increase in lupus talk happening in the media?  <strong><span style="color: #0000ff;">Lady Gaga, Snoop Dogg’s daughter</span></strong>, and <strong><span style="color: #0000ff;">John Stewart</span></strong> comparing lupus to the <strong><span style="color: #0000ff;">FOX News Network</span></strong>?  You don’t only have to search within the entertainment industry, either.  Last year, news about new potential pharmaceutical treatments on the verge of FDA approval were gaining momentum and the social networks like <strong><span style="color: #0000ff;">Twitter</span></strong> and <strong><span style="color: #0000ff;">Facebook</span></strong> have come alive adding new voices to the campaign in building lupus awareness.</p>
<blockquote><p><strong><span style="color: #ff6600;"><em>The introduction of the internet’s ability to offer </em><span style="color: #0000ff;">ANYONE</span><em> the opportunity to make a difference has truly benefited foundations and their causes, while making each individual person a vital part in creating their own future in living with illness.</em></span></strong></p></blockquote>
<p>If you watch <strong><span style="color: #0000ff;">The View</span></strong> tomorrow, <span style="color: #ff6600;"><strong>Snoop Dogg’s family</strong> </span>will be sharing their story about lupus and their new commitment towards raising more awareness for lupus research.  Locally here in Oregon, it will be on <strong><span style="color: #0000ff;">August 6<sup>th</sup> at 10AM KATU Channel 2</span></strong> (in Portland Metro area).  Outside the Portland area, check<strong><a title="Oregon airtimes" href="http://theview.abc.go.com/airtimes/Oregon" target="_blank"> here</a></strong>  for your local Oregon station air times. In Washington, check <strong><a title="Washington airtimes" href="http://theview.abc.go.com/airtimes/Washington" target="_blank">here</a></strong> .</p>
<p>I’ve noticed that <strong><span style="color: #0000ff;">Whoopi Goldberg</span></strong> has been sporting a <span style="color: #ff6600;"><strong>new orange leather wristband</strong> </span>to promote lupus awareness, which is a nice change from the rubber bands that started out with Lance Armstrong.  Information about these bands can be found on the link below and it appears that Snoop Dog has had a part in the new look.  I’m pleased to see we (lupus marketing) are coming up with more original ideas, although I would personally prefer to see it move away from leather.</p>
<p>But, I digress&#8230; </p>
<p>For more information, including a link to the latest <span style="color: #0000ff;"><strong>People magazine’s article</strong> </span>with Snoop Dogg and family, visit The S.L.E NY <strong><a href="http://www.lupusny.org/news/foundation-news/2010/08/05/tune-view-tomorrow" target="_blank">website</a></strong> . </p>
<p><strong><em><span style="color: #ff6600;">Hope you are all enjoying mild symptoms, love and laughter, and lots of rest and relaxation this summer!</span></em></strong></p>
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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>
		<category><![CDATA[Lupus]]></category>
		<category><![CDATA[MLWT]]></category>
		<category><![CDATA[Oregon]]></category>
		<category><![CDATA[Personal Stories]]></category>
		<category><![CDATA[Relationship-focused]]></category>
		<category><![CDATA[Social Support]]></category>
		<category><![CDATA[Treatment Approaches and Perspectives]]></category>
		<category><![CDATA[Washington]]></category>
		<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>A Cautionary Tale</title>
		<link>http://mylifeworkstoday.com/2010/07/21/a-cautionary-tale/</link>
		<comments>http://mylifeworkstoday.com/2010/07/21/a-cautionary-tale/#comments</comments>
		<pubDate>Thu, 22 Jul 2010 00:39:07 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Chronic Illness]]></category>
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		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=1065</guid>
		<description><![CDATA[For this next edition of Patients For a Moment (July 28th), hosted by Queen of Optimism on her blog, she presents the question: &#8220;What is the nicest thing (or things) anyone has done for you since you became ill?&#8221; I believe the nicest things that I’ve received from people since my health challenges hit me have [...]]]></description>
			<content:encoded><![CDATA[<p>For this next edition of Patients For a Moment (July 28th), hosted by Queen of Optimism on her <a title="Q's blog" href="http://medicalpuzzle.com/" target="_blank"><strong>blog</strong></a><strong>, </strong>she presents the question:</p>
<p><strong><span style="color: #0000ff;">&#8220;<em>What is the nicest thing (or things) anyone has done for you since you became ill?&#8221;</em></span></strong></p>
<p>I believe the nicest things that I’ve received from people since my health challenges hit me have been to offer me reality checks about humanity. </p>
<p>As difficult as they may feel at first, the comments, behaviors, choices and changes in our relationships have motivated me to respond in ways that have been outside of my comfort zone.  That blundering through my fear, grief, anger, apprehension and surprise has built within me a sense of resiliency that I never knew possible.  <strong><em><span style="color: #0000ff;">It has also led me to some surprising appreciations</span></em></strong>. </p>
<p>Those relationships that dissolve due to the loss of knowing which words to speak, or the ugly realization that their patience really DID have an end, offered me opportunities to see that all people are fallible.  It has been easier, after some time passes, to run into these individuals (who walked out of my life or visa versa) and speak to them as fellow humans.  <strong><em><span style="color: #0000ff;">These are simply honest people who may have made decisions that hurt me, but were decent enough to be upfront about it</span></em></strong>. </p>
<p>It has been the relationships with my medical teams that have given me moments of vulnerability as well as moments of gratitude.  Beginning with my first practitioner’s refusal to acknowledge the necessity for a urine sample to my specialist’s decision to waive his fees in light of my difficult circumstances, I have learned much about the dimensions of medical care.  The hospital’s response to my then insurance company’s act of betrayal showed me that  they do have the capacity to care.  The laughter and care of the staff, both at the labs or during my hospital stay, gifted me with moments of respite from the uncertainties I was facing.  In fact, I was amazed at the commitment my medical team had shown during my hospital stay by keeping a toxic individual from threatening my chances of survival. It was through their security and protection that offered me time to bounce back from kidney failure by restricting their visits, for which I will always be grateful.  As easy as it sometimes is to become frustrated with how our nation’s medical care falls short or how cold our doctors may seem during our 15-minute appointments, <strong><em><span style="color: #0000ff;">seeing the other side of those presumptions has pushed me to look beyond the white coats and clip boards.  They live and breathe just like I do</span></em></strong>.</p>
<p>There have been individuals who have astonished me with their compassion and respect, even when they didn’t understand what was going on in my life.  The mysterious food boxes left on my front porch without a note.  The bills paid on my behalf without explanation or warning.  Their cards, letters, phone calls and emails touched my hardened heart with grace and sincerity.  Their well-intentioned, unsolicited questions and suggestions forced me to listen to reason through my veil of distrust and seclusion.  Their understanding that they would never fully know what I was experiencing allowed me my time alone without explanation or apologies.  <strong><em><span style="color: #0000ff;">They knew I needed the time to breathe and, when I felt I needed no one, they helped me to see how wrong I had been to hold onto my pride like a medal of honor.  It was clearly more like a fortress of shame and was something that needed to be dismantled.</span> </em></strong></p>
<p>It is easy for us living with illness to see ourselves outside of a mainstream, assuming that those around us are generally healthy and live without pain.  The fact is, our human bodies have the potential to break down in so many ways, some in plain view and some well disguised.  As we physically hurt, those we share our days with also hurt.  By not knowing how to fix things, what to say or where they can make the connection with us to show us how much they care.  Those individuals who keep their distance or walk away are showing us their limitations and vulnerabilities, too.  <strong><em><span style="color: #0000ff;">It hurts to realize we can’t do or must do the thing we sometimes need to do.</span></em></strong></p>
<blockquote><p><strong><em><span style="color: #ff6600;">I’m learning to see beyond the actions and listen beyond the words in order to understand our shared human conditions.  It isn’t always easy or instantly possible, but I’m getting better at recognizing limitations as simple realities.</span></em></strong></p></blockquote>
<p>It is in facing the walls or getting through the battles that do contribute to my story.  It is the stories of others that help me keep my own story in perspective.  <span style="color: #ff6600;"><strong>The kindest thing that I feel anyone can do for me is to acknowledge my place here on earth as a part of a bigger story.</strong> </span> I’ve learned that the essence of being human is exploring the complexities of the many characters living within our stories. </p>
<p><strong><em><span style="color: #0000ff;">The struggles and villains make the story interesting.  The perserverance to keep going makes it all worth the sharing.</span></em></strong></p>
<p><strong><em><span style="color: #0000ff;">~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</span></em></strong></p>
<p><strong><span style="color: #0000ff;"><em>Visit Q and the rest of the participants at her blog carnival!</em></span></strong></p>
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		<title>Knowing Where Illness Stops and Love Begins</title>
		<link>http://mylifeworkstoday.com/2010/07/16/knowing-where-illness-stops-and-love-begins/</link>
		<comments>http://mylifeworkstoday.com/2010/07/16/knowing-where-illness-stops-and-love-begins/#comments</comments>
		<pubDate>Fri, 16 Jul 2010 22:38:45 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Advocacy]]></category>
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		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=1060</guid>
		<description><![CDATA[I&#8217;m working down my catch up list of posts and have reached this trailer for a new movie that addresses living with illness (lupus) and learning to love right along with it. Check out Love Simple]]></description>
			<content:encoded><![CDATA[<p>I&#8217;m working down my catch up list of posts and have reached this trailer for a new movie that addresses living with illness (lupus) and learning to love right along with it.</p>
<p>Check out <span style="text-decoration: underline;"><span style="color: #800080;"><a href="http://www.youtube.com/watch?v=0SHn1eCxdtY">Love Simple</a></span></span></p>
]]></content:encoded>
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		<title>A Penny For Your Thoughts</title>
		<link>http://mylifeworkstoday.com/2010/07/08/a-penny-for-your-thoughts/</link>
		<comments>http://mylifeworkstoday.com/2010/07/08/a-penny-for-your-thoughts/#comments</comments>
		<pubDate>Thu, 08 Jul 2010 23:56:28 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Advocacy]]></category>
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		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=1055</guid>
		<description><![CDATA[On Tuesday night, July 6th, I watched the PBS NewsHour (on OPB Channel 10 ) segment (reported by correspondent Betty Ann Bowser and funded by  Robert Wood Johnson   Foundation ) about the new health coverage option for high-risk patients with preexisting conditions .  Living without any health coverage myself, I was eager to learn a little [...]]]></description>
			<content:encoded><![CDATA[<p>On Tuesday night, July 6<sup>th</sup>, I watched the PBS NewsHour (<strong><a title="OPB website" href="http://www.opb.org/television/programs/pbs-newshour/" target="_blank">on OPB Channel 10</a></strong> ) segment (reported by correspondent <strong><a title="Ms. Bowser's bio" href="http://www.pbs.org/newshour/aboutus/bio_bowser.html" target="_blank">Betty Ann Bowser</a></strong> and funded by  <a href="http://www.rwjf.org/" target="_blank"><strong>Robert Wood Johnson</strong></a>   Foundation ) about the <strong><a title="PBS link to segment with video" href="http://www.pbs.org/newshour/bb/health/july-dec10/healthcare_07-06.html" target="_blank">new health coverage option for high-risk patients with preexisting conditions</a></strong> .  Living without any health coverage myself, I was eager to learn a little more about what this option might offer. </p>
<p><strong><a title="Healthcare.gov website" href="http://www.healthcare.gov/index.html" target="_blank">Healthcare.gov</a></strong> is coordinating this insurance plan that has been offered to all 50 states as a means of meeting some of the immediate needs until the entire 2014 health care reform law will take effect.   Some states opted out of using the allocation funds due to their concerns about receiving enough funding to cover the insurmountable health care costs facing their high-risk residents.  Oregon is one of the states that opted <strong><span style="color: #0000ff;">in</span></strong> to using the funds for this new insurance plan and you can find out more about what  the program might offer you by going to this <strong><a title="Choose your state" href="http://www.healthcare.gov/law/about/provisions/pcip/index.html" target="_blank">Healthcare.gov link</a></strong>. </p>
<p>I know that there are plenty of people in this high-risk category and that it would be impossible (on many levels) to create a plan that offers something for everyone.  Although my situation meets the criteria to pursue this option, the fact is that I would end up paying more per month than I do now and I simply can’t afford it.  That isn’t by choice, mind you. </p>
<p>The whole idea behind insurance is that we put money into a bucket per month that is supposed to insure us from future medical expenses and I get that.  Paying something each month to know that I will have some help paying for appointments, procedures and (heaven forbid) emergency situations is a wise investment.  Here’s the catch, however.  I paid for years when lupus hadn’t even arrived yet into a large insurer’s pocket and rarely needed any medical services.  I was young, healthy and taking the best care to make sure I stayed that way, yet I still paid them for this unused care through my employers totaling several thousands of dollars.  Decades later, and without warning, my health took a turn and I needed that coverage.  Although my employers and plans had changed, this company had my name and track record on file.  In spite of the money I paid and with little cost to them from their profits via my investments, they threw me to the curb.  Actually, they threw me to the curb AND sued me for <strong>$10, 000</strong> claiming I knew I was sick before I signed up for my health plan.  Hello, &#8230;my doctors didn’t even know what was going on until my kidneys shut down.  But, that’s a nightmare best left in the past. </p>
<p>It is the past, however, that has put me where I am today.  I cannot get insurance, even if I could afford it.  There are many things about the new <strong><span style="color: #0000ff;"><a title="2014 Health Care Reform Law" href="http://www.healthcare.gov/law/about/index.html" target="_blank">Affordable Care Act taking effect in 2014</a></span></strong> that has me worried.  As wonderful as it feels to think that I will have coverage, even with my health history, I still don’t know how I will be able to afford it.  Having options is one thing, but the question about who foots the bill—our government or myself—is what haunts me.  I agree that we need to develop a healthier country and providing more health care options is a great step forward.  The health care costs are still way too high, though.</p>
<blockquote><p><strong><em><span style="color: #ff6600;">Do I want to, once again, put what cash I have into my health care bucket only to have an insurer avoid returning my investment when I need it?  Will they hike the expenses and/or claim that I did something that disqualifies my right to the care I invested into?  Worse yet, as this news segment points out, what if I put into this plan and they run out of money before I need it?  Let’s face it, insurance may be profitable, but managing my own health care is not. There’s something really wrong with that.</span></em></strong></p></blockquote>
<p>As I wait for the industry to be <em><strong><span style="color: #0000ff;">seriously</span></strong></em> overhauled, I focus as much as I can in making the best choices I can every day to avoid future health woes.  There’s no guarantee either way, whether I pay an insurer or myself to put into a savings account, that I will have the care I need when I need it.  I can’t control what the insurance companies do, what the government will or won’t provide or how my lupus will progress.  There are a few things I can eat, move, try, think and prepare for that might cost me less down the road.  Even that sometimes costs me a pretty penny, but well worth the effort. </p>
<p>The gal in this news segment, <span style="color: #0000ff;"><strong>Ms. Eaton</strong></span>, who is living with the heart condition represents many of the people I work with every day.  She also represents my situation very closely.  Many of us aren’t disabled, are still working, take care of ourselves and are willing to pay what we can.  We understand that health care will never be free and that preventing illness would be ideal.  We also know that we don’t ask for diseases like lupus, genetic or congenital conditions, see ourselves as victims or live to frustrate the medial establishment.  We are simply going to have to do what we can with what we have until “<span style="color: #0000ff;"><strong><em>health</em></strong></span>” is as valued as “<strong><em><span style="color: #0000ff;">profit</span></em></strong>”.</p>
<p>Where are you in all of this?</p>
<ul>
<li><strong><span style="color: #ff6600;">Have you lost your health coverage through loss of employment or cutting costs at work?</span></strong></li>
<li><strong><span style="color: #ff6600;"> How well can you manage your illness without care?</span></strong></li>
<li><strong><span style="color: #ff6600;"> What are some of the things you let go in order to manage your health?</span></strong></li>
<li><strong><span style="color: #ff6600;">How do you expect to handle the 2014 shift?</span></strong></li>
</ul>
<p> After taking a look at the news segment link and learn more about what the preexisting insurance plan offers, I would be interested in hearing what you think.  Share your story, too~  you&#8217;re not alone.</p>
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		<title>My Version of Physical Comedy</title>
		<link>http://mylifeworkstoday.com/2010/07/05/my-version-of-physical-comedy/</link>
		<comments>http://mylifeworkstoday.com/2010/07/05/my-version-of-physical-comedy/#comments</comments>
		<pubDate>Mon, 05 Jul 2010 20:54:23 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Behaviors and Patterns]]></category>
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		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=1049</guid>
		<description><![CDATA[I will apparently go to great lengths to avoid exercising on purpose.  This Wednesday, July 7th, was to be a Target Practice gathering at Cooper Mountain.  It has to be postponed, but I still encourage you to take some time and walk their trails.  Although, the heat is on its way, too, so I may [...]]]></description>
			<content:encoded><![CDATA[<p>I will apparently go to great lengths to avoid exercising on purpose.  This Wednesday, July 7<sup>th</sup>, was to be a Target Practice gathering at <strong><a title="Metro Park website" href="http://www.oregonmetro.gov/index.cfm/go/by.web/id=16016" target="_blank">Cooper Mountain</a></strong>.  It has to be <span style="color: #ff6600;"><strong>postponed</strong></span>, but I still encourage you to take some time and walk their trails.  Although, the heat is on its way, too, so I may have had to postpone it anyway.</p>
<p>Yesterday, I hosted an <strong><em><span style="color: #0000ff;">Independence</span></em></strong> celebration. Not only for our country’s independence from England, but also as a send-off party for three of the five high school graduates on our street corner.  The boys couldn’t make it, but the three girls and all their siblings (who also are all girls), enjoyed their transitioning from the kiddie table of life to the adult table. </p>
<p> As I scurried around making sure all my guests had food, beverages and an enjoyable visit, I:</p>
<ul>
<li>slammed my shin into a chair and the door of the dishwasher</li>
<li>smashed my finger while closing a cupboard door</li>
<li>hit my head on the deck when underneath while getting the folding chairs</li>
<li>bit my lip while eating </li>
</ul>
<p>And the pièce de résistance? </p>
<p>Nine of my piggy’s were being cooperative, but the big one on my right foot wasn’t paying attention and jammed itself into a deck stair.  You should see the glorious colors it boasts today for its miscalculation.</p>
<blockquote><p><em><strong><span style="color: #ff6600;">You may be asking what my clumsiness has to do with lupus or Independence Day.  Well, it certainly illustrates what a lack of mindfullness can lead to.</span></strong> </em></p></blockquote>
<p>How many times have I been bewildered listening to my mom complain about stubbing her toe on the same table she did the day before?  Over the years, I was unable to fathom why someone would keep doing that over and over again!  She knew the table was there and had the broken toes to prove it.  Yet, she continued.  <strong><span style="color: #0000ff;">I am beginning to realize, now, that it isn’t about not knowing where the table is at all.  It is about how our bodies and our brains tend to lose a sense of cooperation as we age</span></strong>.  We know in our minds that the table is there, but the communication with our toes gets lost somewhere in the translation as life, medications, and aging catches up with us. </p>
<p>I’ve been doing a lot of reading lately about <strong><a title="a general idea" href="http://en.wikipedia.org/wiki/Kinetics" target="_blank">kinetics</a></strong> , aging and our brains and symptoms of health trouble.  That’s mainly because I want to learn as much as I can to care best for my aging mother.  However, as I continue to read and learn, I’m developing an understanding that all of what I’m preparing for applies to me, too.  I’m not as young as I once was, but the increasing bouts of clumsiness are pointing to some of my life’s influences that I am letting get the best of me. </p>
<p>I know this is a Canadian <strong><a title="MySenior website" href="http://www.myseniorsite.ca/health-clumsy.htm" target="_blank">senior-focused site</a></strong> , but it breaks down some of the more common reasons for clumsiness and you will see how much of this applies to us at any age, lupus involvement or physical condition.  This article also gives us some pointers on what we can do to prevent it, which brings me back to that independence and the postponement for this Wednesday’s gathering. </p>
<p>Accidents happen and my day yesterday doesn’t necessarily mean that there is anything seriously wrong with me.  However, I am beginning to notice some trouble in maintaining my mindfullness and focus during the day.  When we are younger and/or not under the influence of stressors and meds, paying attention is so much easier.  We don’t realize how much work it takes to be that way until we have days like I did yesterday.   I do know that I won’t be able to support my mom’s (or my even own!) independence if I don’t start <strong><span style="color: #0000ff;">intentionally building some cognitive strength along with my physical strength</span></strong>.  To get through our days safely, we really do need both to be on board.</p>
<p><strong><em><span style="color: #ff6600;">So, once my toe heals, we will be having that Target Practice gathering&#8230;if for any reason, to better avoid days like my yesterday</span></em></strong>.</p>
<p> Hope you all are enjoying your weekend without any injuries, pain or discomfort~ take care!</p>
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		<title>Scleroderma Foundation OR Chapter on AM Northwest This Thursday</title>
		<link>http://mylifeworkstoday.com/2010/06/29/scleroderma-foundation-or-chapter-on-am-northwest-this-thursday/</link>
		<comments>http://mylifeworkstoday.com/2010/06/29/scleroderma-foundation-or-chapter-on-am-northwest-this-thursday/#comments</comments>
		<pubDate>Tue, 29 Jun 2010 22:55:02 +0000</pubDate>
		<dc:creator>maria</dc:creator>
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		<description><![CDATA[  I received a note from the Oregon Chapter of the Scleroderma Foundation that they will once again be on our own KATU Channel 2 AM Northwest morning show!  This Thursday,July 1st, AM Northwest will generously offer program time for the chapter&#8217;s scleroderma awareness team to introduce information about living with scleroderma and to present the upcoming &#8220;Stepping Out To Cure Scleroderma&#8221; [...]]]></description>
			<content:encoded><![CDATA[<p><img class="aligncenter" title="OR Chapter Scleroderma Foundation" src="http://www.scleroderma.org/images/indexlogo.gif" alt="" width="200" height="130" /> </p>
<p>I received a note from the Oregon Chapter of the Scleroderma Foundation that they will once again be on our own KATU Channel 2 AM Northwest morning show!  This <strong><span style="color: #0000ff;">Thursday,July 1st, AM Northwest</span></strong> will generously offer program time for the chapter&#8217;s <strong><em><span style="color: #000000;">scleroderma awareness team</span></em></strong> to introduce information about living with scleroderma and to present the upcoming &#8220;<strong><span style="color: #ff6600;">Stepping Out To Cure Scleroderma</span></strong>&#8221; benefit walk scheduled for<strong><span style="color: #0000ff;"> July 10th</span></strong> here in Portland.</p>
<p>The exact time for the team, composed of chapter members <strong><span style="color: #0000ff;">Maria Rivelli, Sue Pinkerton and Erion Moore</span></strong>,  isn&#8217;t set until the show airs, so you will need to watch the entire show between 9-10 am.  This program (and station) has been very generous and supportive over the years, so consider letting them know how much you appreciate opportunities (such as this Thursday&#8217;s show) to learn about our local health and wellness resources. </p>
<p>Also remember to register for the <strong><span style="color: #0000ff;">5th annual benefit walk on Saturday, July 10th</span></strong>.  You can do so by going to  their <strong><a title="Stepping Out For Scleroderma Walk" href="http://www.firstgiving.org/scleroderma-oregon" target="_blank">Firstgiving page</a></strong> .  Also, you can find more walk details at the Scleroderma link under the &#8220;Announcements&#8221; tab on our main page.</p>
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		<title>People First!</title>
		<link>http://mylifeworkstoday.com/2010/06/24/people-first/</link>
		<comments>http://mylifeworkstoday.com/2010/06/24/people-first/#comments</comments>
		<pubDate>Fri, 25 Jun 2010 05:54:08 +0000</pubDate>
		<dc:creator>maria</dc:creator>
				<category><![CDATA[Advocacy]]></category>
		<category><![CDATA[Books]]></category>
		<category><![CDATA[Chronic Illness]]></category>
		<category><![CDATA[Community]]></category>
		<category><![CDATA[Disability]]></category>
		<category><![CDATA[Events]]></category>
		<category><![CDATA[Internet]]></category>
		<category><![CDATA[Local Resources]]></category>
		<category><![CDATA[Lupus]]></category>
		<category><![CDATA[Oregon]]></category>
		<category><![CDATA[Resources]]></category>
		<category><![CDATA[Social Support]]></category>
		<category><![CDATA[Washington]]></category>
		<category><![CDATA[Work and Career]]></category>
		<category><![CDATA[Pacific Northwest]]></category>
		<category><![CDATA[portland oregon]]></category>
		<category><![CDATA[rosalind joffe]]></category>
		<category><![CDATA[working with chronic illness]]></category>

		<guid isPermaLink="false">http://mylifeworkstoday.com/?p=1027</guid>
		<description><![CDATA[Today, BloggersUnite is hosting an online event entitled People First: Empowering People With Disabilities . I’ve been having unusually prominent symptoms from my lupus.  I always anticipate a little trouble once the sunshine finally arrives here in Oregon, but these are symptoms that I haven’t had or remember having for quite a few years.  Naturally, [...]]]></description>
			<content:encoded><![CDATA[<p><img class="alignnone" src="http://www.bloggersunite.org/image/event/medium/717.jpg" alt="" width="110" height="154" /></p>
<p>Today, <strong><a title="BloggersUnite website" href="http://www.bloggersunite.org/" target="_blank">BloggersUnite</a></strong> is hosting an online event entitled <strong><em><a title="EmPOWERing People" href="http://www.bloggersunite.org/event/people-first-empowering-people-with-disabilities" target="_blank">People First: Empowering People With Disabilities </a></em></strong>.</p>
<p>I’ve been having unusually prominent symptoms from my lupus.  I always anticipate a little trouble once the sunshine finally arrives here in Oregon, but these are symptoms that I haven’t had or remember having for quite a few years.  Naturally, my first concern is that my kidneys are in trouble.  The rates of kidney involvement for us with lupus averages about 50%.  I’m one of the lucky ones where it went straight to my kidneys to begin with, and I do mean lucky.  Since there isn’t much to do for my lupus via medication, having the back up of dialysis and decades of kidney research gives me a sense of assurance for a ‘Plan B’.  Of course, it is a moot point since it doesn’t do me much good without medical insurance or a nice nest egg to pay for it.</p>
<p>So, my imagination has been going wild with concerns of clotting and strokes, MS, CNS involved lupus, and so on.  It’s amazing how much panic I can stir up when my body sends me the signal that something is amiss, no matter how truly insignificant.  Clearly, I do not appreciate all that I am blessed with health-wise, if I can be derailed this easily.  What a baby. </p>
<p>I know some amazing people living with much more challenge, heartache, spirit, grit and courage than I do.  I am honored to have these friends encouraging me to take what life throws at me and who <em><strong><span style="color: #ff6600;">always</span></strong> </em>teach me something about my perspectives, judgments and biases, character and life, as a whole.  I don’t want to learn how to make more excuses or whine about my supposed bad luck.  I want to learn to be strong, and my friends (who I feel deserve to have their abilities mentioned rather than their dis-abilities) have a particularly keen ability to get me off my lazy tail end and try harder.  It is these friends I want to honor today and thank them for making my life more interesting, fulfilling and humbling.</p>
<p>I want to quickly mention a few websites that I visit as often as I can, to learn more for my friends, myself and my family. </p>
<p><strong><span style="color: #0000ff;"><a title="Disability Studies, Temple blog" href="http://disstud.blogspot.com/" target="_blank">Disability Studies, Temple University</a></span></strong>  features exceptional writers, topics, information and many more notable blogs or websites to visit.  I am not living with a disability, but always leave this resource with something to consider and someone to learn more about.  </p>
<p>Lupus has been included under the <strong><a title="ADA Home Page" href="http://www.ada.gov/" target="_blank">ADA guidelines</a></strong> of disabling conditions or diseases.  However, the protection within the workplace or even within the medical community seeking/maintaining insurance coverage is still pretty vague and inconsistent.  If you are in a situation at work where maintaining employment has become a problem due to your chronic health challenges, I highly recommend you check out my friend and chronic illness coach,<strong><span style="color: #0000ff;"> <a title="Rosalind's website" href="http://cicoach.com/index.html" target="_blank">Rosalind Joffe</a></span></strong> .   She is a wonderful resource for anyone living with a chronic condition who wants to succeed in finding their place in the workforce.  I&#8217;m currently going through her <strong><a title="Keep Working With Chronic Illness" href="http://www.cicoach.com/workbookpromo.html" target="_blank">workbook</a></strong> that compliments her book <strong><span style="color: #0000ff;"><em><a title="Rosalind's book" href="http://www.cicoach.com/book.html" target="_blank">Women, Work, and Autoimmune Disease:  Keep Working, Girlfriend!</a></em></span></strong> that I have reviewed <strong><span style="color: #ff6600;"><a title="November 2008 Virtual Book Tour review" href="http://mylifeworkstoday.com/2008/11/14/virtual-book-tour-arrives/" target="_blank">here</a></span></strong> Here are a couple of her blog posts that address disclosing your health, your rights to learn more about and some recommendations. </p>
<p><strong><span style="color: #0000ff;"><a title="Rosalind's workingwithchronicillness blog" href="http://workingwithchronicillness.com/2009/08/job-interviews-and-illness-disclosure/ " target="_blank">Job Interviews and Disclosure</a></span></strong></p>
<p><strong><a title="Rosalind's workingwithchronicillness blog" href="http://workingwithchronicillness.com/2010/03/you-can-lose-insurance-benefits-because-you-didnt-disclose/ " target="_blank">Insurance benefits and Disclosure</a></strong></p>
<p>Also, for anyone looking for more information about advocacy for chronic illness disability, here are some additional resources we know for you to check out: </p>
<p><strong><span style="color: #ff6600;">National Resources</span></strong></p>
<blockquote><p><strong><span style="color: #0000ff;"><a title="Advocacy website" href="http://www.advocacyforpatients.org/" target="_blank">Advocacy for Patients</a></span></strong> </p></blockquote>
<blockquote><p><span style="color: #0000ff;"><strong><a title="US Dept of Labor website" href="http://www.dol.gov/odep/    " target="_blank">US Department of Labor  &#8211; Office of Disability Employment Policy</a></strong></span></p></blockquote>
<p><span style="color: #ff6600;"><strong>Oregon</strong><strong> Resources</strong></span></p>
<blockquote><p><a title="DRO website" href="http://www.disabilityrightsoregon.org/" target="_blank"><strong><span style="color: #0000ff;">Disability Rights Oregon</span></strong> </a> </p></blockquote>
<blockquote><p><strong><span style="color: #0000ff;"><a title="State of Oregon information" href="http://www.disability.gov/state/oregon?go.y=14&amp;go.x=27" target="_blank">Disability.gov</a></span></strong> </p></blockquote>
<p><strong><span style="color: #ff6600;">For Oregon Employers</span></strong></p>
<blockquote><p><strong><a title="Oregon.gov website" href="http://www.oregon.gov/BOLI/TA/T_FAQ_Disability.shtm " target="_blank">Oregon.gov FAQs regarding disability in the workplace</a></strong>  </p></blockquote>
<p><strong><em><span style="color: #ff6600;">If you know of other online or Oregon resources, please be sure to leave them in the comments section here.  We are always looking for more to add here on the website.</span></em></strong></p>
<p><span style="color: #ff6600;"><strong><span style="color: #0000ff;">Here&#8217;s to emPOWERing all of us~ we all bring something to the table</span><em><span style="color: #0000ff;">.</span></em></strong></span></p>
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