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	<title>Fibromyalgia Haven &#187; compassion</title>
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	<link>http://www.fibrohaven.com</link>
	<description>Living a Life of Essence in Spite of Illness</description>
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		<title>I Lost Control and Liked it!</title>
		<link>http://www.fibrohaven.com/2009/08/07/i-lost-control-and-liked-it/</link>
		<comments>http://www.fibrohaven.com/2009/08/07/i-lost-control-and-liked-it/#comments</comments>
		<pubDate>Fri, 07 Aug 2009 22:48:42 +0000</pubDate>
		<dc:creator>FibroHaven</dc:creator>
				<category><![CDATA[Mindful Living]]></category>
		<category><![CDATA[community]]></category>
		<category><![CDATA[compassion]]></category>
		<category><![CDATA[Fibrohaven]]></category>
		<category><![CDATA[fibromyalgia]]></category>
		<category><![CDATA[research]]></category>
		<category><![CDATA[resources]]></category>
		<category><![CDATA[roundtable]]></category>
		<category><![CDATA[support]]></category>
		<category><![CDATA[support group]]></category>
		<category><![CDATA[working with Fibromyalgia]]></category>

		<guid isPermaLink="false">http://fibrohaven.wordpress.com/?p=1424</guid>
		<description><![CDATA[Yesterday was FibroHaven&#8217;s monthly roundtable meeting. The topic for the meeting was &#8220;Working With Fibromyalgia.&#8221; The plan was to have a focused discussion and answer questions like: Are you able to work? Did you have to change careers? Do you work full-time or part-time? Are you self-employed? Do you work from home? Are you on [...]]]></description>
			<content:encoded><![CDATA[<p>Yesterday was FibroHaven&#8217;s monthly roundtable meeting. The topic for the meeting was &#8220;<em><strong>Working With Fibromyalgia</strong></em>.&#8221; The plan was to have a focused discussion and answer questions like:</p>
<p><em><img class="alignright size-medium wp-image-1425" title="woman-working" src="http://fibrohaven.files.wordpress.com/2009/08/woman-working.jpg?w=249" alt="woman-working" width="174" height="210" />Are you able to work? </em></p>
<p><em>Did you have to change careers?</em></p>
<p><em>Do you work full-time or part-time?</em></p>
<p><em>Are you self-employed?</em></p>
<p><em>Do you work from home? </em></p>
<p><em>Are you on disability? </em></p>
<p><em>Can you work while on disability?</em></p>
<p>Topics for a very interesting conversation, right? (<em>In fact the latest edition of <a href="http://www.fmaware.org/site/PageServer?pagename=resources_awareMagazine" target="_blank">Fibromyalgia Aware Magazine</a> is focused on this topic. If you are not already subscribed, I highly recommend you do and start receiving this valuable resource.</em>) But then you know what happens when you bring together thirteen passionate, enthusiastic and well-spoken women&#8230; I lost control of the meeting very early on, and had a great time letting the conversation go where it will. And I think the topic of work might have actually come up once or twice.</p>
<p>As usual, I was touched by many of the things shared, and impressed with the generosity and compassion of the group. There were sad moments and funny moments. Moments of anger and frustration, and moments of joy and hope. I took notes as I always do, and I thought I would share with you a few quotes from the day &#8211; starting with my favorite:</p>
<p><img class="alignright size-medium wp-image-1426" title="little-roller-skater" src="http://fibrohaven.files.wordpress.com/2009/08/littlejanetrollerskates.jpg?w=240" alt="little-roller-skater" width="192" height="240" /><em>&#8220;You can&#8217;t be sad on rollerskates.&#8221;</em></p>
<p><em>&#8220;I&#8217;m rewriting my own life commandments.&#8221;</em></p>
<p><em>&#8220;My ego would love to do it, but I have to say no.&#8221;</em></p>
<p><em>&#8220;I do not fight my pain anymore. I breathe into it.&#8221;</em></p>
<p><em>&#8220;I am an athlete and competitor in my mind.&#8221;</em></p>
<p>I&#8217;m not sure if there is anything in my life I am more proud to contribute to than this group. I am usually left depleted after each meeting, but I happily give each ounce of my energy it takes. It fulfills a need in me for community and giving, and it hopefully fulfills a need for each member that makes the commitment to attend and participate &#8211; even on the days when their facilitator loses control!</p>
<p>It is remarkable to me the quality of people who develop Fibromyalgia and chronic illness. In fact I wrote a post on my Everyday Health blog with each person I know with FM in mind. I would love for you to read it. I think you may see yourself described there. Take a look and tell me what you think: <a href="http://fibrohaven.wordpress.com/2009/09/14/your-illness-may-be-invisible-but-you-are-not/" target="_self">Remember Who You Are</a></p>
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		<item>
		<title>I Am Feeling So Lucky and Supported!</title>
		<link>http://www.fibrohaven.com/2009/06/19/i-am-feeling-so-lucky-and-supported/</link>
		<comments>http://www.fibrohaven.com/2009/06/19/i-am-feeling-so-lucky-and-supported/#comments</comments>
		<pubDate>Fri, 19 Jun 2009 20:35:11 +0000</pubDate>
		<dc:creator>FibroHaven</dc:creator>
				<category><![CDATA[Things I Love]]></category>
		<category><![CDATA[blog]]></category>
		<category><![CDATA[cognitive functioning]]></category>
		<category><![CDATA[community]]></category>
		<category><![CDATA[compassion]]></category>
		<category><![CDATA[fibrofog]]></category>
		<category><![CDATA[fibromyalgia]]></category>
		<category><![CDATA[Fibromyalgia Haven]]></category>
		<category><![CDATA[luck]]></category>
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		<guid isPermaLink="false">http://fibrohaven.wordpress.com/?p=1264</guid>
		<description><![CDATA[Last night I had another great Fibromyalgia support group meeting. The structure of the meeting was new for the group; each of us brought books we have read that have had a positive impact on our lives in one way or another. Members brought books on topics from self-help and memoir writing to Lake Wobegon. A very [...]]]></description>
			<content:encoded><![CDATA[<p>Last night I had another great <a href="http://fibrohaven.wordpress.com/2008/12/05/fibromyalgia-support-group/" target="_self">Fibromyalgia support group</a> meeting. The structure of the meeting was new for the group; each of us brought books we have read that have had <img class="alignright size-thumbnail wp-image-1273" title="notebook" src="http://fibrohaven.files.wordpress.com/2009/06/notebook2.jpg?w=150" alt="notebook" width="150" height="114" />a positive impact on our lives in one way or another. Members brought books on topics from self-help and memoir writing to Lake Wobegon. A very clever member shared a book that has had the greatest impact on helping her with the dreaded fibro fog &#8211; a notebook! Seriously, everyone of us should have one close by at all times, and what ever you do, don&#8217;t lose it like I did mine. Devastating!</p>
<p> </p>
<p>As each meeting does, last night validated all of the work I put into organizing the group, because each meeting and each interaction rewards me, supports me, and encourages me. I feel blessed and honored to be a part of the group, and proud that I played a part in bringing us all together. After each meeting, members are asked to rate the meeting and leave a comment about their experience. I would like to share with you a comment left by a new member attending her first meeting.</p>
<p> </p>
<blockquote>
<p style="font-size:1em;margin:0 0 .7em;padding:0;">Dannette called the group &#8220;<a href="http://fibrohaven.wordpress.com/2009/05/15/conversation-on-isolation/" target="_self">a bunch of scientists</a>&#8221; once and that&#8217;s a pretty apt description. Very rarely have I ever run into people who were so interested in learning without having a (well at least I didn&#8217;t sense one&#8230;) hidden agenda. The people were kind and generous with both listening and talking and the interaction is a lot of fun. It is very obvious to me that Dannette nurtures this group and puts a lot of careful thought into how to best meet the needs of the members. The people who have joined the support group but have not yet attended a function are really missing out. This truly is a support group.</p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;"> </p>
</blockquote>
<p style="font-size:1em;margin:0 0 .7em;padding:0;">Can I tell you how happy this comment made me. Of course I appreciated what she wrote about me personally, but it was her overall impression of the group that pleased me the most. She sees the group as I do &#8211; kind and generous people who respect and support each other, and who are actively interested in improving their lives. We are a realistic bunch and recognize that there are so many layers to Fibromyalgia, and each book we share, topic we discuss and positive results we report is just a part of a piece of this million piece puzzle. But together we are a much greater force than each of us is alone.</p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;"> </p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;">A group like this does not just happen. First it takes someone to decide to make it happen. And that someone needs to be commited &#8211; despite their own health issues &#8211; to nurture the group and put &#8220;a lot of careful thought into how to best meet the needs of the members.&#8221; But that is only the beginning. Then people need to join the group. And then the people who join need to trust their instincts and honor their need for support by participating. And when all those pieces come together, a night like last night happens &#8211; a night of sharing and caring and community.</p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;"> </p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;">I can&#8217;t tell you how much I wish I could create a group just like this for each and everyone of you. Everyday in comments on my <a href="http://fibrohaven.wordpress.com/2009/05/28/online-resources-for-fibromyalgia-support-and-information/" target="_self">blog</a>, on <a href="http://fibrohaven.wordpress.com/2009/05/20/online-social-networking-for-fibromyalgia-support-and-information/" target="_self">Twitter</a>, in <a href="http://fibrohaven.wordpress.com/2009/05/21/online-forums-for-fibromyalgia-support-and-information/" target="_self">message boards</a>, I see the need for more connection, more support and more interaction for people suffering with Fibromyalgia and other invisible illnesses. My heart literally aches with the need to help. I feel like it is my purpose, and nights like last night reinforce my commitment.</p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;"> </p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;">So what am I going to do about it? I have been brewing a plan for awhile now. It is a slow brew due to the faulty filter and machine I call my brain, but it is brewing non-the-less. My blog <em><a href="http://fibrohaven.wordpress.com/" target="_self">Fibromyalgia Haven</a></em> is just the beginning of my passion to create a Fibromyalgia community for everyone, like the small FM community I am lucky enough to have created here locally. I am lucky to have this group, but the key is, I created my own luck.</p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;"> </p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;"><strong><img class="alignleft size-medium wp-image-1269" title="fortune_cookie" src="http://fibrohaven.files.wordpress.com/2009/06/fortune_cookie1.jpg?w=300" alt="fortune_cookie" width="300" height="225" />&#8220;</strong><em><strong>Diligence is the mother of good luck</strong></em><strong>.&#8221; &#8211; Benjamin Franklin</strong></p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;"><strong><br />
</strong>
</p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;"><strong>“</strong><em><strong>Luck is what happens when preparation meets opportunity</strong></em><strong>.” &#8211; Seneca</strong></p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;"><strong><br />
</strong>
</p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;"><strong>“</strong><em><strong>I&#8217;m a great believer in luck, and I find the harder I work, the more I have of it</strong></em><strong>.” &#8211; Thomas Jefferson</strong></p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;"> </p>
<p style="font-size:1em;margin:0 0 .7em;padding:0;">And that is the truth about luck. The harder I work, the luckier I get. I am here in this place, poised to heal and to help others heal, because I have worked for it. I am going to continue to work at it. It is the commitment I make to myself and to anyone who wants to join me on my journey. You are all invited, but it is up to me to make sure the journey reaches everyone, even those of you so far off the beaten path that you are certain no one will ever find you or care that you are there. I care! And as my wise friend <a href="http://fibrohaven.wordpress.com/2009/04/07/embracing-your-diagnosis-as-a-gift-teacher-blessing/" target="_self">Hillary</a> reminds me often &#8211; you are loved, and you are not alone.</p>
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		<title>Embrace Your Individuality and Honor Your Contribution</title>
		<link>http://www.fibrohaven.com/2009/06/12/embrace-your-individuality-and-honor-your-contribution/</link>
		<comments>http://www.fibrohaven.com/2009/06/12/embrace-your-individuality-and-honor-your-contribution/#comments</comments>
		<pubDate>Fri, 12 Jun 2009 21:50:46 +0000</pubDate>
		<dc:creator>FibroHaven</dc:creator>
				<category><![CDATA[Mindful Living]]></category>
		<category><![CDATA[chronic illness]]></category>
		<category><![CDATA[community]]></category>
		<category><![CDATA[compassion]]></category>
		<category><![CDATA[contribution]]></category>
		<category><![CDATA[emotional wellbeing]]></category>
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		<guid isPermaLink="false">http://fibrohaven.wordpress.com/?p=1249</guid>
		<description><![CDATA[Yesterday was graduation day. I cheered as my niece received her 8th grade promotion and teared watching my nephew receive his high school diploma. So proud of both of them! It was a great and emotional day filled with special moments and wonderful speeches. The valedictorian at my nephew&#8217;s graduation gave a funny and moving [...]]]></description>
			<content:encoded><![CDATA[<p>Yesterday was graduation day. I cheered as my niece received her 8th grade promotion and teared watching my nephew receive his high school diploma. So proud of both of them! It was a great and emotional day filled with special moments and wonderful speeches.</p>
<p><img class="alignright size-medium wp-image-1251" title="graduation" src="http://fibrohaven.files.wordpress.com/2009/06/graduation.jpg?w=199" alt="graduation" width="199" height="300" />The valedictorian at my nephew&#8217;s graduation gave a funny and moving speech. She had the entire football stadium laughing with jokes about her mixed heritage &#8211; her mother is Mexican and her father is Jewish. She apologized to everyone unable to find a seat because her mother had her entire side of the family seated in the home-side bleachers. Such a witty girl, and by the time she changed the tone of the speech she held everyone&#8217;s attention.</p>
<p>Her tone changed as she went on to point out and talk about individual students &#8211; not the jocks, or the cheerleaders, or the ASB officers though. Her list was filled with the classmates who went mostly unnoticed over the past four years &#8211; students who stayed in the background for one reason or another, yet still made up the unique fabric of her graduating class. I found myself in tears over stories of students I had never met, and who maybe even my nephew had never met. She painted such a lovely picture of how each of them were individuals, and they should embrace who they are, and they should all be proud of the contribution they made to their graduating class. Her message really impressed and inspired me.</p>
<p>I woke up this morning thinking about it, and about how it applies to so much more than just her graduating class. I laid in bed thinking about how many of us with Fibromyalgia and chronic illness are like those students who remain in the background. <strong>We struggle to participate. We struggle to reach our full potential. We struggle to contribute to our homes, and our jobs, and our communities.</strong> Our lives are a struggle, and yet we still are &#8211; each of us &#8211; uniquely individual and valuable.</p>
<p>It is hard to honor your contribution when all you can see is what you are no longer able to do. It is hard to embrace who you are when all you can do is miss who you used to be. <strong>Chronic illness is hard</strong>, but as I once heard a very wise girl say, the fabric of our lives would be completely different if just one &#8220;student&#8221; made the choice not to complete this journey. Have compassion for yourself. Accept who you are. <strong>Embrace your individuality and honor your contribution.</strong> I do!</p>
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		<title>Sharing My Struggles</title>
		<link>http://www.fibrohaven.com/2009/06/05/sharing-my-struggles/</link>
		<comments>http://www.fibrohaven.com/2009/06/05/sharing-my-struggles/#comments</comments>
		<pubDate>Fri, 05 Jun 2009 21:52:44 +0000</pubDate>
		<dc:creator>FibroHaven</dc:creator>
				<category><![CDATA[Mindful Living]]></category>
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		<guid isPermaLink="false">http://fibrohaven.wordpress.com/?p=1233</guid>
		<description><![CDATA[I am distraught today over an email I received from a member of my support group. Here is where my writing about this gets sticky. How much can I share and still honor her privacy?   I guess I can just say that she is someone I reached out to individually because she was interested [...]]]></description>
			<content:encoded><![CDATA[<p>I am distraught today over an email I received from a member of my support group. Here is where my writing about this gets sticky. How much can I share and still honor her privacy?</p>
<p> </p>
<p>I guess I can just say that she is someone I reached out to individually because she was interested in getting involved in something I am doing and reaping great health benefits from, and now the whole thing has blown up in my face. I am just stunned at how my support and good intentions are now being twisted into such ugliness. It goes back to The Law of Detatchment and the lesson I learned there &#8211; <em>&#8220;Today I will commit myself to detachment. I will allow myself and those around me the freedom to be as they are. I will not ridgidly impose my idea of how things should be. I will not force solutions on problems, thereby creating new problems. I will participate in everything with detached involvement.&#8221;</em></p>
<p> </p>
<p>Basically what it all boils down to is I tried to help someone before she was ready to face or accept any changes that would be required of her to take control of her health. She is not ready, and I am perfectly okay with that. I did not and do not judge her, I just let her know that the opportunity is still available to her and that I would gladly go with her (and I am just talking about going to a holistic chiropractor, nothing too scary) to help alleviate her anxiety.</p>
<p> </p>
<p>Now I am being accused of not showing her understanding or compassion and of pushing her away. Really the email blind-sided me and blew me away! And this was my favorite line &#8211; &#8220;Just remember I and many others have FMS and cannot predict how we will feel on certain days.&#8221; Okay, really, because I was not aware of that! Seriously, I guess I am a little mad. Now I am pondering how to respond to her, realizing full well that she possibly could read this post before I reply to her email. I am mad and offended. I did miss a call from her one day, and because I did I gave her my private cell number for her to reach me and even that offended her. I am starting to think I just cannot win with her.</p>
<p> </p>
<p>But then what does that mean for her future with the support group? She has really enjoyed and benefited from each meeting she has attended and I would hate for her to lose that over a misunderstanding, but I am at a loss of how to salvage this relationship. The last email I sent her was so positive and encouraging and yet she still thinks I am pushing her away. I get the feeling she is projecting a lot of personal stuff onto me, and I am not sure I can reason with her. I am not sure I have the energy to reason with her, because remember, I have Fibromyalgia &#8220;and cannot predict how I will feel on certain days.&#8221;</p>
<p> </p>
<p>I have had members join and leave the group because it was not a good fit for them, and I am fine with that. I have never had issues with a participating member though, so I am at a loss. I know I cannot be all things to all people and still honor my own health, but my every intention toward her was pure, and my head is spinning over her reaction. <em>What to do? What to do? </em>At this point, I really have no idea what I am going to do.</p>
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		<title>Fibromyalgia Affects Everyone: An Interview with My Niece</title>
		<link>http://www.fibrohaven.com/2009/05/29/fibromyalgia-affects-everyone-an-interview-with-my-niece/</link>
		<comments>http://www.fibrohaven.com/2009/05/29/fibromyalgia-affects-everyone-an-interview-with-my-niece/#comments</comments>
		<pubDate>Fri, 29 May 2009 18:21:56 +0000</pubDate>
		<dc:creator>FibroHaven</dc:creator>
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		<guid isPermaLink="false">http://fibrohaven.wordpress.com/?p=1192</guid>
		<description><![CDATA[My niece Dani is thirteen years old. I have been living with the symptoms of Fibromyalgia almost every day of her life. This is the only way she knows me. With the guidance of her mother and a naturally compassionate heart, she has always been very loving and even nurturing towards me. We have a [...]]]></description>
			<content:encoded><![CDATA[<p><img class="alignleft size-thumbnail wp-image-1194" title="IMG_0656" src="http://fibrohaven.files.wordpress.com/2009/05/img_0656.jpg?w=150" alt="IMG_0656" width="150" height="84" />My niece Dani is thirteen years old. I have been living with the symptoms of Fibromyalgia almost every day of her life. This is the only way she knows me. With the guidance of her mother and a naturally compassionate heart, she has always been very loving and even nurturing towards me. We have a great relationship and I am so proud of the young woman she is becoming. I love spending time with her and have her at my house often. She sees firsthand the difference between a &#8220;good&#8221; and a &#8220;bad&#8221; day. She is with me today and it gave me the idea to interview her for my blog. I thought you might be interested in her perception of Fibromyalgia. I know I am!</p>
<p> </p>
<p><strong>You were just an infant the day I had my <a href="http://fibrohaven.wordpress.com/2009/01/28/the-many-triggers-of-fibromyalgia/" target="_self">accident that eventually developed into Fibromyalgia</a>. What is one of your earliest memories of having an aunt with Fibromyalgia?</strong></p>
<p><em>I remember that you were not always able to pick me up so much or do things together like I did with other people in the family, also I remember when we would go to places like amusement parks or Tustin Tiller Days you didn&#8217;t always go on the rides with me and C.J. </em>(C.J. is her older brother/my nephew)</p>
<p> </p>
<p><strong>Your mom has always been very caring and compassionate about my health issues. Do you remember any advice or information she gave you about Fibromyalgia?</strong></p>
<p><em>Yes, she always would tell me, and still does, &#8220;your auntie isn&#8217;t having such a good day so don&#8217;t be too hyper or be too much of a bug.&#8221;  and that always made me know that you were not feeling too well and I understood that it was your Fibromyalgia.</em></p>
<p> </p>
<p><strong>Even when I am not feeling well, we always manage to have a lot of fun together. What is one of your favorite memories of a time we spent together when I was not feeling well.</strong></p>
<p><em>My favorite day together over all, and you were not feeling well was when we went to the beach and fed the squirrels and then went to Cabo Grill and met Bam Margera and Tony Hawk.</em></p>
<p><em><img class="aligncenter size-full wp-image-1195" title="Bam&amp;Dani" src="http://fibrohaven.files.wordpress.com/2009/05/bamdani.jpg" alt="Bam&amp;Dani" width="500" height="375" /></em></p>
<p><em><img class="aligncenter size-full wp-image-1196" title="Tony&amp; Dani" src="http://fibrohaven.files.wordpress.com/2009/05/tony-dani.jpg" alt="Tony&amp; Dani" width="500" height="375" /><br />
</em></p>
<p> </p>
<p><strong>That was a good day! The very next day we went to the beach again and got caught in a rip-tide. It was very scary for both of us, but I hated not being strong enough to rescue you. Thank goodness we were both safe. You spent a lot of time with me last summer. How did it affect you when I was not feeling well?</strong></p>
<p><em>I always knew when you weren&#8217;t feeling well, it would upset me sometime because I knew that we weren&#8217;t going to be spending so much time together or we wouldn&#8217;t do much or go places and it was summer so I wanted to but I always understood that when you don&#8217;t feel well that you say no to something like the beach and I would know that means no.</em></p>
<p> </p>
<p><strong>So on the days when I was not up for going to the beach and we stayed home we still managed to spend quality time together. What would you say is your favorite way to spend time with me when I am having a &#8220;bad&#8221; day?</strong></p>
<p><em>I like it when we just sit around and watch tv but my FAVORITE thing is poker=] </em>(I taught Dani to play poker several years ago, and she is a shark! If you sit down to play with her, expect to lose all your money.)</p>
<p> </p>
<p><strong>If you could use just one word to describe Fibromyalgia what would it be?</strong></p>
<p><em>hmmmm&#8230;. painful</em></p>
<p> </p>
<p><strong>What advice would you give to a friend or classmate with a loved one with Fibromyalgia?</strong></p>
<p><em>I would first of all tell them that I have an auntie with Fibromyalgia and I would tell them its a disease that controls your body and sometimes takes time out of your life because you are so sore from doing something the day before and I would tell them that whoever it is that has Fibromalgia wouldn&#8217;t be able to do the things they used to be able to do and I would explain to them some examples that happened between us and the family concerning your condition.</em></p>
<p> </p>
<p><strong>Do you think we would be closer or that I could love you any more if I had never been diagnosed with Fibromyalgia?</strong></p>
<p><em>NO!!! I could never ask for anymore of your love because I know that you love me a lot and we are already so close I don&#8217;t think we could get any closer to each other. I love you so much and you are my favorite auntie and the best auntie a niece could EVER have and just the time I spend with you and the love we share is enough for me=]</em></p>
<p> </p>
<p><strong>How much of your participation in this interview had to do with the $20 I promised you?</strong></p>
<p><em>Hahahaha well you just told me right now so I was just doing this because you asked me to and because I think it was awesome to do something like this. I don&#8217;t need money to tell you how I feel about you and your condition and I love you so much you don&#8217;t need to give me money this was something for fun.</em></p>
<p> </p>
<p>You are a wise and loving niece Dani. I am a lucky and proud Auntie!</p>
<p> </p>
<p><a href="http://fibrohaven.wordpress.com/2009/05/02/productivity-is-my-new-thing/" target="_self">28/30</a></p>
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		<title>Misery Loves Company</title>
		<link>http://www.fibrohaven.com/2009/05/23/misery-loves-company/</link>
		<comments>http://www.fibrohaven.com/2009/05/23/misery-loves-company/#comments</comments>
		<pubDate>Sat, 23 May 2009 23:24:22 +0000</pubDate>
		<dc:creator>FibroHaven</dc:creator>
				<category><![CDATA[FibroHaven News]]></category>
		<category><![CDATA[acupuncture]]></category>
		<category><![CDATA[Acupuncture Today]]></category>
		<category><![CDATA[chronic fatigue]]></category>
		<category><![CDATA[chronic pain]]></category>
		<category><![CDATA[compassion]]></category>
		<category><![CDATA[emotional wellbeing]]></category>
		<category><![CDATA[fatigue]]></category>
		<category><![CDATA[fibromyalgia]]></category>
		<category><![CDATA[grumpy]]></category>
		<category><![CDATA[ignorance]]></category>
		<category><![CDATA[judgment]]></category>
		<category><![CDATA[labels]]></category>
		<category><![CDATA[mental illness]]></category>
		<category><![CDATA[pain]]></category>
		<category><![CDATA[sarcasm]]></category>

		<guid isPermaLink="false">http://fibrohaven.wordpress.com/?p=1085</guid>
		<description><![CDATA[Because I don&#8217;t feel well and am really grumpy, I wanted to share with you an article from a judgmental and ignorant acupuncturist, because I think it will make you all grumpy too. You know the saying, &#8220;misery loves company,&#8221; well I am inviting you all over to my place today. Let me know if this article makes [...]]]></description>
			<content:encoded><![CDATA[<p>Because I don&#8217;t feel well and am really grumpy, I wanted to share with you an article from a judgmental and ignorant acupuncturist, because I think it will make you all grumpy too. You know the saying, &#8220;misery loves company,&#8221; well I am inviting you all over to my place today. Let me know if this article makes you seethe as much as it did me. For every excellent practitioner out there &#8211; open-minded and truly interested in helping us heal &#8211; there is a bozo like this.</p>
<p> </p>
<p>From <a href="http://www.acupuncturetoday.com/mpacms/at/article.php?id=31962" target="_blank">Acupuncture Today</a>. This quote picks up in the middle of an article written by Kaleb Montgomery, DTCM. He is expressing his frustrations over patients he has treated who stop coming, even though they are experiencing benefits. There might be a good message in there if he wasn&#8217;t so short sited. I am leaving my own comments and opinions bolded and in parenthesis throughout the article because it is fun and makes me feel good. Feel free to join me!</p>
<p> </p>
<blockquote>
<p style="font-family:Myriad, Verdana, Geneva, Arial, Helvetica;color:#000000;font-size:12px;line-height:16px;font-weight:normal;margin:16px 0;">In another case, a woman with fibromyalgia and chronic fatigue was referred to me because she was not progressing. This woman had so much pain in her jaw and teeth that she was unable to eat solid food. For the last six years, she had only eaten steamed vegetables and tofu pureed in a blender and slurped through a straw. I am not sure why she limited herself to just steamed veggies and tofu, I know that if pain limited my diet to liquid, those two foods would not be my first choice of sustenance (<strong>First judgmental comment here. He has charmed me already</strong>). As we will see, more likely her outrageously limited food choice was probably a reflection of the mental/emotional root of her illness (<strong>Of course she has mental and emotional problems, she has Fibromyalgia after all. What other explaination could there be for her food choice? She is crazy!</strong>).</p>
<p style="font-family:Myriad, Verdana, Geneva, Arial, Helvetica;color:#000000;font-size:12px;line-height:16px;font-weight:normal;margin:16px 0;">Like the first example, we got great results in just a few treatments. After one treatment, her teeth felt so much better that she was able to eat fresh crispy lettuce for the first time in six years. In our next treatment, she told me that she asked her dentist if acupuncture could help tooth pain and he said no, so she was going to stop treatment even though she had continued to improve this week as well (<strong>Okay so the patient is a little short sited as well. Probably what made her an easy target for Mr. Montgomery</strong>). Needless to say, I was frustrated and tried to convince my patient that the dentist was wrong because she actually had improved. However she would not change her mind and I did not see her again.</p>
<p style="font-family:Myriad, Verdana, Geneva, Arial, Helvetica;color:#000000;font-size:12px;line-height:16px;font-weight:normal;margin:16px 0;">Again, the story would have ended there except that I spoke to the health care provider that referred her to me in the first place. This time the health care provider called me because he was mystified by our patient&#8217;s behavior. This patient had come back to them for continued treatment. When he asked why she had stopped seeing me even though it was the only thing that worked, she insisted that she did not want to talk about it. Every treatment she came in and asked, &#8220;What can I do to get better,&#8221; and he would say &#8220;Why don&#8217;t you go back to see Kaleb?&#8221; She would refuse to talk about it and of course did not call me for more treatment (<strong>She sounds more scared and confused to me than mentally and/or emotionally unstable. Maybe they could have gotten further with her with compassion rather than frustration and labels</strong>).</p>
<p style="font-family:Myriad, Verdana, Geneva, Arial, Helvetica;color:#000000;font-size:12px;line-height:16px;font-weight:normal;margin:16px 0;">For me the most interesting part of this story is not that she stopped coming for a treatment that was working. I eventually came to the conclusion that she was not ready to heal yet (<strong>This is a very really possibility and problem. Sometimes an illness becomes so much a part of who we are, it is hard to imagine our life without it. What if she was receiving disability and could not survive without it? Frightening to think of having to start over and redefine your life when you have been conditioned to live with and expect pain. If I was told tomorrow I was cured of FM, I am not sure I would trust it. It would take time to make the mental adjustment &#8211; time and compassion from my health practitioners. That does not make me mentally and emotionally unstable, that makes me human.</strong>). We all have gotten advice from friends, maybe about a bad relationship, that we dismiss to the eye-rolling dismay of our friends or family. Later on, when the situation plays out exactly as predicted by our friends, we say &#8220;Why didn&#8217;t you tell me!&#8221;</p>
<p style="font-family:Myriad, Verdana, Geneva, Arial, Helvetica;color:#000000;font-size:12px;line-height:16px;font-weight:normal;margin:16px 0;">This patient could not yet let go of her disease. The fascinating bit for me is that she continued to spend her time and money to get a treatment that was not working and that she knew would probably not work. If she had just discontinued treatment and not gone back for more, then I would have still been frustrated but could have chalked it up to tight finances or her not being ready to heal thus far. However, the baffling part was that she still spent good money on ineffectual treatment. Why?</p>
<p style="font-family:Myriad, Verdana, Geneva, Arial, Helvetica;color:#000000;font-size:12px;line-height:16px;font-weight:normal;margin:16px 0;">My guess is that like many fibromyalgia/chronic-fatigue patients, she used her illness to get attention, love and support from friends and family(<strong>OMG! What an idiot! Seriously! What can I say here? He is so clearly detached from the reality. Please, someone, say something intelligent for me here, because I got nothing but OMG!</strong>). She had forgotten how to get attention in a normal healthy way. I hypothesized that her support network would quickly get fed up with her if she stopped seeking treatment all together, so to keep up appearances and be able to play the &#8220;I am doing everything I can&#8221; card, she had to keep &#8220;trying&#8221; to get better (<strong>Really! Again, excellent hypothesis by a clearly compassionate and in-tuned healthcare provider &#8211; </strong><em><strong>she says with extreme sarcasm</strong></em>.<strong> When can I get an appointment?</strong>) .</p>
<p style="font-family:Myriad, Verdana, Geneva, Arial, Helvetica;color:#000000;font-size:12px;line-height:16px;font-weight:normal;margin:16px 0;">Nothing is quite as irritating as someone who is sick but is unwilling to try to help themselves (<strong>Unwilling? Confused maybe. Scared maybe. But unwilling? Never!</strong>). People stuck in that rut quickly find themselves alone and friendless. Being alone and friendless is not what my patient wanted. She wanted the attention, but needed to get/stay sick because it provider her an excuse for something (<strong>Without mentioning the obvious typo in this sentence, I am again just going to reply &#8211; Idiot!</strong>). I did not find out what this something was for her, but I have found it out in other patients. I find this pattern very common in fibromyalgia/chronic-fatigue patients. So common in fact that I will cut this off now and continue this train of thought in my next article by exploring fibromyalgia/chronic-fatigue more. (<strong>Ohhh! Can&#8217;t wait for the next article, in which you perpetuate every negative and inaccurate assumption about Fibromyalgia and chronic fatigue. Do you have a newsletter? Sign me up!</strong>)</p>
</blockquote>
<p style="font-family:Myriad, Verdana, Geneva, Arial, Helvetica;color:#000000;font-size:12px;line-height:16px;font-weight:normal;margin:16px 0;"> </p>
<p style="font-family:Myriad, Verdana, Geneva, Arial, Helvetica;color:#000000;font-size:12px;line-height:16px;font-weight:normal;margin:16px 0;">Initially I did not plan to share this article with you, but I hope that by shining a light on what is so grossly wrong about Mr. Montgomery&#8217;s way of thinking, less people will think like him. People with Fibromyalgia need compassion, support and understanding, not judgments and labels.</p>
<p style="font-family:Myriad, Verdana, Geneva, Arial, Helvetica;color:#000000;font-size:12px;line-height:16px;font-weight:normal;margin:16px 0;"> </p>
<p style="font-family:Myriad, Verdana, Geneva, Arial, Helvetica;color:#000000;font-size:12px;line-height:16px;font-weight:normal;margin:16px 0;"><a href="http://fibrohaven.wordpress.com/2009/05/02/productivity-is-my-new-thing/" target="_self">22/30</a></p>
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		<title>Online Forums for Fibromyalgia Support and Information</title>
		<link>http://www.fibrohaven.com/2009/05/21/online-forums-for-fibromyalgia-support-and-information/</link>
		<comments>http://www.fibrohaven.com/2009/05/21/online-forums-for-fibromyalgia-support-and-information/#comments</comments>
		<pubDate>Thu, 21 May 2009 18:27:12 +0000</pubDate>
		<dc:creator>FibroHaven</dc:creator>
				<category><![CDATA[FibroHaven News]]></category>
		<category><![CDATA[chronic illness]]></category>
		<category><![CDATA[community]]></category>
		<category><![CDATA[compassion]]></category>
		<category><![CDATA[emotional wellbeing]]></category>
		<category><![CDATA[fibromyalgia]]></category>
		<category><![CDATA[online forum]]></category>
		<category><![CDATA[support]]></category>
		<category><![CDATA[support group]]></category>

		<guid isPermaLink="false">http://fibrohaven.wordpress.com/?p=1139</guid>
		<description><![CDATA[Continuation of Online Social Networking for Fibromyalgia Support and Information.    In my previous post I listed the main social networking sites available if you are looking to to join an online community for support, encouragement, camaraderie, or just to have a place to vent. My inspiration for putting these posts together is to help alleviate the potential for isolation if [...]]]></description>
			<content:encoded><![CDATA[<p>Continuation of <a title="Permanent Link to Online Social Networking for Fibromyalgia Support and Information" rel="bookmark" href="http://fibrohaven.wordpress.com/2009/05/20/online-social-networking-for-fibromyalgia-support-and-information/">Online Social Networking for Fibromyalgia Support and Information</a>. </p>
<p> </p>
<p>In my previous post I listed the main social networking sites available if you are looking to to join an online community for support, encouragement, camaraderie, or just to have a place to vent. My inspiration for putting these posts together is to help alleviate the potential for isolation if you are living with Fibromyalgia or most any chronic illness. For this post I am going to focus on the many online forums and support groups available. Again, this is just a partial list of what is out there, so feel free to leave recommendations in the comments if you know of a forum or support group I did not cover.</p>
<p> </p>
<p>I do not have firsthand knowledge of most of these site, so please note my inclusion of them is not an endorsement, it is for informational purposes. The description after each link is taken from the sites own tag line.</p>
<p> </p>
<p><strong>Online Forums/Support Groups</strong></p>
<p><strong></strong></p>
<p><strong></strong></p>
<p> </p>
<p><a href="http://www.dailystrength.org/c/Fibromyalgia/forum" target="_blank">Daily Strength</a> &#8211; Free, anonymous support from people just like you</p>
<p> </p>
<p><a href="http://www.fibromyalgia-support.org/forum/forum-1.html" target="_blank">Fibromyalgia Support Form</a> &#8211; The Official Fibro-Support Center</p>
<p> </p>
<p><a href="http://www.fibro360.com/forum/index.php?p=discussions" target="_blank">Fibro 360</a> &#8211; A community of Hope and Understanding for People suffering from Fibromyalgia</p>
<p> </p>
<p><a href="http://www.fibrohugs.org/index.php?option=com_fireboard&amp;Itemid=168" target="_blank">FibroHugs</a> &#8211; Support for Fibromyalgia</p>
<p> </p>
<p><a href="http://www.fibrotalk.com/forum/" target="_blank">FibroTalk</a> &#8211; Online Community Support</p>
<p> </p>
<p><a href="http://www.flickr.com/groups/simple_pleasures_with_fibromyalgia/" target="_blank">Flickr</a> &#8211; Simple Pleasures with Fibromyalgia</p>
<p> </p>
<p><a href="http://www.healingwell.com/community/default.aspx?f=24" target="_blank">Healing Well</a> &#8211; On Diseases, Disorders and Chronic Illness</p>
<p> </p>
<p><a href="http://www.healthboards.com/boards/forumdisplay.php?s=27160fdbc348b1a396bd17e4c737259f&amp;f=55" target="_blank">Health Boards</a> &#8211; Health Message Boards</p>
<p> </p>
<p><a href="http://community.livejournal.com/fibromyalgia/" target="_blank">Live Journal</a> &#8211; Express Yourself, Share Your Life, Connect with Friends Online</p>
<p> </p>
<p><a href="http://www.mdjunction.com/fibromyalgia" target="_blank">MD Junction</a> &#8211; people helping people</p>
<p> </p>
<p><a href="http://www.patientslikeme.com/fibromyalgia/community" target="_blank">Patients Like Me</a> &#8211; Share your experiences, learn from others, and connect with patients just like you</p>
<p> </p>
<p><a href="http://www.prohealth.com/fibromyalgia/blog/boardhome.cfm" target="_blank">Pro Health</a> &#8211; Commerce with Compassion</p>
<p> </p>
<p><a href="http://www.ukfibromyalgia.com/forums/" target="_blank"></a></p>
<p><a href="http://www.ukfibromyalgia.com/forums/" target="_blank"></a></p>
<p><a href="http://www.ukfibromyalgia.com/forums/" target="_blank"></a></p>
<p><a href="http://www.ukfibromyalgia.com/forums/" target="_blank"></a></p>
<p><a href="http://www.ukfibromyalgia.com/forums/" target="_blank">UK Fibromyalgia Forum</a> &#8211; The new discussion forums for those with Fibromyalgia in the UK</p>
<p> </p>
<p><a href="http://www.wearefibro.org/do/communities" target="_blank">We Are Fibro</a> &#8211; The Social Support Network for those Living with Fibromyalgia</p>
<p> </p>
<p><a href="http://boards.webmd.com/webx/topics/hd/Chronic-Pain/Fibromyalgia-Support-Group/?ecd=wnl_fib_051909&amp;em=Zmlicm9oYXZlbkBnbWFpbC5jb20=" target="_blank">WebMD</a> &#8211; Better Information. Better Health.</p>
<p> </p>
<p>As you can see the options are many. I have spent time on a few of these boards and I can say some were simply too negative for me, while others were full of inspiration and hope. If you make the decision to become involved, take your time to find the community that is best suited for your needs. Do not get discouraged if the first board you try does not suit you. Just come back to this list and pick another. I would love to hear your thoughts and experiences.</p>
<p> </p>
<p><a href="http://fibrohaven.wordpress.com/2009/05/02/productivity-is-my-new-thing/" target="_self">20/30</a></p>
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		<title>Leave a Comment, You May Make a New Friend</title>
		<link>http://www.fibrohaven.com/2009/03/30/leave-a-comment-you-may-make-a-new-friend/</link>
		<comments>http://www.fibrohaven.com/2009/03/30/leave-a-comment-you-may-make-a-new-friend/#comments</comments>
		<pubDate>Mon, 30 Mar 2009 21:49:28 +0000</pubDate>
		<dc:creator>FibroHaven</dc:creator>
				<category><![CDATA[Mindful Living]]></category>
		<category><![CDATA[art]]></category>
		<category><![CDATA[blog]]></category>
		<category><![CDATA[blog roll]]></category>
		<category><![CDATA[blogging]]></category>
		<category><![CDATA[brave]]></category>
		<category><![CDATA[community]]></category>
		<category><![CDATA[compassion]]></category>
		<category><![CDATA[connections]]></category>
		<category><![CDATA[control]]></category>
		<category><![CDATA[expression]]></category>
		<category><![CDATA[fibromyalgia]]></category>
		<category><![CDATA[friendship]]></category>
		<category><![CDATA[gift]]></category>
		<category><![CDATA[hope]]></category>
		<category><![CDATA[Kellie Robinson]]></category>
		<category><![CDATA[personal awakening]]></category>
		<category><![CDATA[self acceptance]]></category>
		<category><![CDATA[support]]></category>
		<category><![CDATA[therapeutic]]></category>
		<category><![CDATA[traumatic experience]]></category>
		<category><![CDATA[writing]]></category>

		<guid isPermaLink="false">http://fibrohaven.wordpress.com/?p=881</guid>
		<description><![CDATA[When I began my blog last October it was most definitely a selfish endeavor. I wanted (and needed) a space of my own to vent, process, absorb and share what my life with Fibromyalgia is all about. Since the birth of my blog, I have had a personal awakening and now understand that I am [...]]]></description>
			<content:encoded><![CDATA[<p>When I began my blog last October it was most definitely a selfish endeavor. I wanted (and needed) a space of my own to vent, process, absorb and share what my life with Fibromyalgia is all about. Since the birth of my blog, I have had a personal awakening and now understand that I am so much more than what Fibromyalgia has taken away from me. Writing about my experiences has given me back the control that I let FM take away from me so many years ago. I have become more accepting of how my life has changed and more hopeful for what my future holds.</p>
<p>The best part of my blog though has been the connections I have made with people who also struggle with Fibromyalgia and other chronic illnesses. It brings me joy when someone takes the time to leave a comment because something I wrote spoke to them, or when someone adds Fibromyalgia Haven to the blog roll on their own site as a recommendation to their readers. Recently I discovered a new blog because of the link she created by adding me to her blog roll. I wanted to share with you her latest post and introduce you to the brave woman and talented artist <a href="http://kellierobinson.blogspot.com/2009/03/burnt-offerings-and-finding-old-love.html">Kellie Robinson</a>.</p>
<p>Here is a excerpt from her post and an example of her art:</p>
<blockquote><p>About a decade ago, when I first found I was addicted to polymer clay, I fell in love with doing filigree work. I discovered eventually I could blend my clay colors as I was extruding them, and I became even more entranced.<br />
<img class="alignright size-full wp-image-882" title="filagreenecklace" src="http://fibrohaven.files.wordpress.com/2009/03/filagreenecklace.jpg" alt="filagreenecklace" width="320" height="269" /><br />
Shortly after this, I became a victim of a violent crime. I was at work, and a guy put a gun up to my head while he robbed us. I immediately had a severe post traumatic stress attack. I couldn&#8217;t leave my house or go anywhere by myself, and work was out of the question. I sat around and thought about the incident over and over. My husband had to drive me to therapy appointments, because I thought I saw this guys car every time I got behind the wheel. After a week or two I eventually turned to my clay and my new discovery. For almost a month, I worked on these beads. While working on the beads, I just blocked everything out, and would get so caught up in them that I forgot to think about the armed robbery. That is just the way it is whenever I do the filigree work. They really did help me to heal. The beads are quite large, I really never meant to wear it. It was meant as an art piece, even though I didn&#8217;t consider myself to be an artist at that time. A friend talked me into submitting them to a magazine, Jewelry Crafts, and to my amazement, they published the piece, with my instructions.</p>
<p>I ended up developing fibromyalgia shortly after the armed robbery (there is a connection!) and over the years, my clay went on the back burner. I spent the last 3 yrs trying to work full time at the bead store, and that didn&#8217;t really leave me much energy for my clay. I was still teaching polymer clay, but rarely brought the clay out just for myself. About a year ago, I decided I wanted to try some filigree again. I remembered how therapeutic it was, sitting and coiling the strands of clay, gently making precise cuts so everything fit together like a glove. I don&#8217;t know how to explain it, other then it&#8217;s almost like a trance-like state.</p></blockquote>
<p>I was so touched by Kellie&#8217;s post and the telling of her traumatic experience, which developed into Fibromyalgia. If she had not created the link between our two worlds I may never have heard her story or seen her beautiful wearable art. Aren&#8217;t her beads amazing! Kellie&#8217;s description of the therapeutic &#8220;trance-like&#8221; state she goes into when creating them is the reason I think art exists. It is an outlet, an expression, and a gift. I wanted to share Kellie&#8217;s gift with you and also share the comment she left me after I left one to her:</p>
<blockquote><p>fibrohaven, I have to tell you I had mixed feelings about posting this blog. I really thought my artsy friends would have no interest in my health problems. I thought about it for over a month before I finally posted it.</p>
<p>I am very new to blogging, and don&#8217;t at all understand how you found my post, but I am so glad you did. of all the posts I might possibly get, I can promise you that yours will mean the most to me. I found your blog about a month or so ago, and have found it to be the most up to date, SMARTEST, no bullshit info on fibromyalgia. I wish everyone in my life read your blog. I have been devouring your blog! it&#8217;s not just the info on your blog, but the artistic element I find there&#8230;it speaks to me.</p></blockquote>
<p>Reading her comment was most certainly one of my defining moments since beginning my blog. It may seem self-serving that I am sharing it with you, but I do not mean it to be. Instead I mean to show the power of sharing and connecting. The connection Kellie made has been meaningful to both of us. By sharing my life and my story Kellie learned she is not alone in her struggles, and by sharing with me how reading my blog has affected her, I have learned that my voice has purpose and that my story is meaningful. Is there a greater gift then that?</p>
<p>I am so proud of you Kellie for being brave enough to share your truth, even though you worried that your friends may not understand or be interested. I hope they surprised you with their compassion and understanding. And now you can count me among your friends. I do care, and I do understand. Thank you so much for connecting our two worlds. I hope your story will inspire others to do the same.</p>
<p>P.S. And you most definitely are an artist!</p>
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		<title>You Do Not Need to Have Fibromyalgia to be My Friend</title>
		<link>http://www.fibrohaven.com/2009/01/15/you-do-not-need-to-have-fibromyalgia-to-be-my-friend/</link>
		<comments>http://www.fibrohaven.com/2009/01/15/you-do-not-need-to-have-fibromyalgia-to-be-my-friend/#comments</comments>
		<pubDate>Fri, 16 Jan 2009 05:50:47 +0000</pubDate>
		<dc:creator>FibroHaven</dc:creator>
				<category><![CDATA[Things I Love]]></category>
		<category><![CDATA[compassion]]></category>
		<category><![CDATA[fibromyalgia]]></category>
		<category><![CDATA[friendship]]></category>
		<category><![CDATA[patience]]></category>

		<guid isPermaLink="false">http://fibrohaven.wordpress.com/?p=630</guid>
		<description><![CDATA[You do not need to have Fibromyalgia to be my friend, you only need to have compassion. You do not need to have Fibromyalgia to understand me, it is okay if we are different. You do not need to have Fibromyalgia to sympathize with my pain, but I do ask that you have patience. You do not [...]]]></description>
			<content:encoded><![CDATA[<p>You do not need to have Fibromyalgia to be my friend, you only need to have compassion.</p>
<p>You do not need to have Fibromyalgia to understand me, it is okay if we are different.</p>
<p>You do not need to have Fibromyalgia to sympathize with my pain, but I do ask that you have patience.</p>
<p>You do not need to have Fibromyalgia to walk beside me, but you may need to learn a new pace.</p>
<p>You do not need to have Fibromyalgia to be my friend, real friendship knows no boundaries.</p>
<p> </p>
<p>Tara &amp; Bella couldn&#8217;t be more different, and yet their friendship couldn&#8217;t be more real.  Watch this video about them. It will warm your heart.</p>
<p>[youtube=http://www.youtube.com/watch?v=cBtFTF2ii7U]</p>
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		<title>Score One For the Support Group</title>
		<link>http://www.fibrohaven.com/2008/12/17/score-one-for-the-support-group/</link>
		<comments>http://www.fibrohaven.com/2008/12/17/score-one-for-the-support-group/#comments</comments>
		<pubDate>Wed, 17 Dec 2008 17:16:15 +0000</pubDate>
		<dc:creator>FibroHaven</dc:creator>
				<category><![CDATA[Things I Love]]></category>
		<category><![CDATA[carb cravings]]></category>
		<category><![CDATA[compassion]]></category>
		<category><![CDATA[coping skills]]></category>
		<category><![CDATA[customers]]></category>
		<category><![CDATA[e-mail]]></category>
		<category><![CDATA[fibromyalgia]]></category>
		<category><![CDATA[FMS]]></category>
		<category><![CDATA[inflamation]]></category>
		<category><![CDATA[low energy]]></category>
		<category><![CDATA[Monavie]]></category>
		<category><![CDATA[multi-level marketing]]></category>
		<category><![CDATA[sales]]></category>
		<category><![CDATA[sales pitch]]></category>
		<category><![CDATA[social networking]]></category>
		<category><![CDATA[support group]]></category>

		<guid isPermaLink="false">http://fibrohaven.wordpress.com/?p=510</guid>
		<description><![CDATA[It did not take long for my moderator responsibilities for the Fibromyalgia support group to get interesting. This past weekend one member showed her ambition and several others showed their displeasure. I organized the support group through an online social networking site. They are masters at making it easy and organized to start your own [...]]]></description>
			<content:encoded><![CDATA[<p>It did not take long for my moderator responsibilities for the <a href="http://fibrohaven.wordpress.com/2008/12/05/fibromyalgia-support-group/" target="_self">Fibromyalgia support group</a> to get interesting. This past weekend one member showed her ambition and several others showed their displeasure.</p>
<p>I organized the support group through an online social networking site. They are masters at making it easy and organized to start your own group. Before this weekend, the only requirement to join my group was to live locally and be suffering from Fibromyalgia and/or chronic pain/illness. Of the 23 members, 22 joined because they were genuinely looking for information, coping skills, community and compassion, but one less than active member was looking for customers.</p>
<p>Her first attempt at interacting with the group was by jumping into an e-mail thread about carb cravings and low energy. This is what she had to say:</p>
<blockquote><p> I would love to share my story about how I now have my inflammation in complete control naturally and I no longer have painful flareups that I have had for years. I have been reading everyone&#8217;s comments and I hear so many people who need help.  The nutritional product that has changed my life and my health is something called Monavie.  I will gladly share my story and explain more about why this one nutritional thing has changed my health.</p></blockquote>
<p>Clearly a sales pitch, right? For those of you who have not heard of <a href="http://www.newsweek.com/id/150499" target="_blank">Monavie</a>, it is one of the newest mulit-level marketing <span style="text-decoration:line-through;">schemes</span> opportunities which promises great health and great wealth. Now the former sales rep in me could almost appreciate the efforts of this &#8220;member.&#8221; After reviewing her profile I could see that she belonged to several health and wellness groups and with each group she offers to &#8220;share her story.&#8221; Let me tell you, sales is not easy, and I would imagine sales of this product is even more challenging. So she is ambitious and she has found a clever way to find potential customers without having to put forth much effort. Well, she tried her sales pitch out on the wrong group.</p>
<p>The well-informed and thoughtful women in my group were all over it.  Here is the first reply.</p>
<blockquote><p>I am very leery of these products that profess to cure every illness known to mankind.  People with FMS do not have inflamation, even though it feels like it. I have tried too many &#8216;miracle&#8217; cures over the years and won&#8217;t subject myself to that roller coaster ride anymore.  It&#8217;s harder on the psyche than dealing with the pain.  That&#8217;s my experience.</p></blockquote>
<p>Thoughtful, well-spoken with a side of &#8220;I&#8217;m nobody&#8217;s fool!&#8221; How clever of her to point out the Fibromyalgia does not cause inflamation. But the replies became a little more heated after that.</p>
<blockquote><p>Please don&#8217;t use our site to promote and make money off of people who suffer from cronic pain which is neurologically based.  There&#8217;s no magic cure. And there&#8217;s no food in the world that can take away my pain. Don&#8217;t try to sell me anything. That&#8217;s not what this group is about.</p></blockquote>
<p>Polite yes, but to the point. And again well-informed enough to point out that Fibromyalgia is believed to be neurologically based. Eventually I stepped in, even though I think the members made their point very clear.</p>
<blockquote><p>I appreciate that you are selling a product you believe in, but as (group members) have expressed already, this is not the appropriate place to do so.  It is important to me as the group moderator that each member feels safe and comfortable sharing with each other via our groups protected e-mails.  Please feel free to join in on any conversations as long as you are simply sharing information, not selling a product.</p></blockquote>
<p>I guess coming from the moderator made it somewhat more official, because until this point she had written several more times in defense of her miracle elixir, but after my response this is what she had to say.</p>
<blockquote><p>I apologize for even trying to help anyone.  Obviously, this is a heated subject for many people and I apologize to everyone for even saying anything.  When you mentioned that you were interested in what people were doing that helps I thought that I would share what I know as a nutritionist and a person who has personally suffered for years.  Obviously, this is a beehive of sensativity here and again I apologize for offending anyone with the recommendation of nutrition.</p></blockquote>
<p>Now as moderator this irritated me, but as a former sales rep this made me laugh. It irritated me because until this happened the e-mail threads between members had been positive and informative and filled with suggestions on how to improve our health and well-being.  We are all clearly interested in doing so. For her to imply otherwise just confirmed that she was looking to make a sale, not a difference, and when she failed she became defensive. And that is why the former sales rep in me found it funny.</p>
<p>It is impossible not to get upset/defensive/irritated/defeated when you put yourself out there and again and again you are turned away. Sales is a hard way to make a hard living. I learned early on that I sold more because people liked me than I did because I sold a great product. This is where she went wrong. She did not take the time to get to know this smart and savvy group of women before force-feeding them a product which already has a not-so-stellar reputation.</p>
<p>Score one for the support group. Now excuse me while I go adjust the membership requirements for my group. I would hate to see what would happen to an Amway distributor if they accidentally joined our group.</p>
<p><img class="alignright size-medium wp-image-515" title="Pissed Woman" src="http://fibrohaven.files.wordpress.com/2008/12/pissedoffwoman.jpg?w=300" alt="Pissed Woman" width="300" height="300" /></p>
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