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	<title>loving recklessly since 1972 &#124; TinuStuff &#187; constant pain</title>
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	<description>My name is Love.</description>
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		<title>Okay. So I Just Found My Online Fam</title>
		<link>http://tinustuff.com/blog/okay-so-i-just-found-my-online-fam-11.php</link>
		<comments>http://tinustuff.com/blog/okay-so-i-just-found-my-online-fam-11.php#comments</comments>
		<pubDate>Fri, 22 Feb 2008 00:58:51 +0000</pubDate>
		<dc:creator>Tinu</dc:creator>
				<category><![CDATA[found gems]]></category>
		<category><![CDATA[but you don't look sick]]></category>
		<category><![CDATA[chronic pain]]></category>
		<category><![CDATA[chronic pain support group]]></category>
		<category><![CDATA[constant pain]]></category>
		<category><![CDATA[invisible disease]]></category>

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		<description><![CDATA[I&#8217;m actually sitting here with a tear pouring down my cheeks and can barely see the screen. Part of my reason for starting this site was to have a place to talk about my pain. It has been sixteen years (!) since I have lived more than a week of a pain-free existence. Since 1992 [...]]]></description>
			<content:encoded><![CDATA[<p>I&#8217;m actually sitting here with a tear pouring down my cheeks and can barely see the screen. Part of my reason for starting this site was to have a place to talk about my pain. It has been sixteen years (!) since I have lived more than a week of a pain-free existence. </p>
<p>Since 1992 I have had problems with my back. And it&#8217;s hard for people to understand that I have tried just about every treatment under the sun, and that the thing that works for them when they  throw their back out won&#8217;t work for me. The nearest thing to a diagnosis that I&#8217;ve ever had was spinal degenerative disorder, which to me is just a fancy way of saying that whenever I resolve a problem with my back it will creep back up again in three years, so don&#8217;t bother having surgery.</p>
<p>On top of that I have nerve damage that affects my extremities. </p>
<p>I don&#8217;t have health insurance, and even when I did I spent a considerable amount of time doing  a little something I like to call &#8220;sucking it up&#8221;. Medications that are strong enough to take away my pain leave me unable to do anything else. Most aren&#8217;t even strong enough to do more than take the edge off, and since I build up immunity so quickly, I only take medications when I&#8217;m absolutely, completely desperate to stop the pain. </p>
<p>And I have been. On more than one occasion, I&#8217;ve considered ending my life just so I wouldn&#8217;t be in pain anymore. </p>
<p>Since I&#8217;ve taken such a stiff upper lip attitude towards the daily pain, most people, especially my friends and family, forget or ignore altogether that I have a chronic pain condition that limits my ability to do certain things. The one consistent exception is the sister who I&#8217;m visiting now. She&#8217;s always looking out for me, period. </p>
<p>Anyway. Living in constant pain, but looking normal on the outside has been an ordeal that has made me feel really alone sometimes. Today I was doing some Facebook research for a client when I found a group on Facebook called &#8220;<a href="http://www.facebook.com/group.php?gid=2208457533">But You Don&#8217;t Look Sick</a>&#8220;.</p>
<p>And reading the description&#8230; felt like&#8230; have you ever been driving through a fog that came on suddenly, and the road turned, and suddenly the fog lifted? It felt like that, like suddenly I could see again, I was awake again, as if my black and white life was now in technicolor. </p>
<p>It was a group for people who have chronic conditions, disabilities or what they called &#8220;invisible&#8221; diseases. And if that wasn&#8217;t enough&#8230; </p>
<p>There&#8217;s also a website. <a href="http://www.butyoudontlooksick.com">ButYouDontLookSick.com</a> is frequently updated with tips for all types of different ailments that fall under the invisible heading, from <a href="http://www.butyoudontlooksick.com/2008/02/stress_relief_and_relaxation_t.php">relaxation techniques</a> to <a href="http://www.butyoudontlooksick.com/2008/02/ideas_for_spring_break_for_chr.php">Spring Break ideas for the Chronically Ill College Student</a>, it&#8217;s a wonderful site.</p>
<p>Even if you&#8217;re blessed with good health, it&#8217;s worth going to read to peek into the lives of people who aren&#8217;t. I guarantee you know someone who is sick but doesn&#8217;t look it, and you&#8217;ll understand them so much more if you read the posts on this site.</p>
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