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	<title>Rheumatoid Arthritis Warrior &#187; Can we laugh now?</title>
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	<link>http://rawarrior.com</link>
	<description>Bringing information &#38; encouragement to fight RA</description>
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		<title>Laura’s CVS Commercial with Kelly’s CVS and the &#8220;a&#8221; Word</title>
		<link>http://rawarrior.com/lauras-cvs-commercial-with-kellys-cvs-and-the-a-word/</link>
		<comments>http://rawarrior.com/lauras-cvs-commercial-with-kellys-cvs-and-the-a-word/?show=comments</comments>
		<pubDate>Mon, 23 Jan 2012 11:00:32 +0000</pubDate>
		<dc:creator>Kelly Young</dc:creator>
				<category><![CDATA[Can we laugh now?]]></category>
		<category><![CDATA[Methotrexate]]></category>
		<category><![CDATA[Rheumatoid Arthritis awareness]]></category>
		<guid isPermaLink="false">http://rawarrior.com/?p=9644</guid>
		<description><![CDATA[Once upon a time, a family switched insurance companies. Mother went to Target to pickup groceries methotrexate with a $10 coupon. When she went to the counter to pay, the insurance had “denied” coverage for the medicine. In the age of cell phones, mother figured she could cure this problem in a moment right there [...]]]></description>
			<content:encoded><![CDATA[<p><img class="alignleft size-full wp-image-9650" title="Kelly's CVS Pharmacy" src="http://rawarrior.com/wp-content/uploads/2012/01/Kelly-CVS.jpg" alt="Kelly's CVS Pharmacy" width="202" height="268" />Once upon a time, a family switched insurance companies. Mother went to Target to pickup <span style="text-decoration: line-through;">groceries</span> methotrexate with a $10 coupon. When she went to the counter to pay, the insurance had “denied” coverage for the medicine. In the age of cell phones, mother figured she could cure this problem in a moment right there in the store. So she called her insurance company.</p>
<p><strong>Customer service:</strong> Can you ask the doctor to prescribe another option? <strong>Mother:</strong> <em>No, methotrexate is a generic drug, there is not another version.</em></p>
<p><strong>CS:</strong> Isn’t there an alternative to metrex-re-erer-eate? <strong>Mother:</strong> <em>No, this is considered the background treatment for the disease. Ninety-five percent of Rheumatoid Arthritis patients are prescribed meth-o-trex-ate.</em></p>
<p><strong>CS:</strong> Your diagnosis is arthritis? You need injections for arthritis? <strong>Mother:</strong> <em>No. It’s a disease. I have to have these injections as treatment. And they are required to continue with my other treatment as well.</em></p>
<p><strong>CS:</strong> But it is arthritis, right? <strong>Mother:</strong> <em>No. It’s not.</em></p>
<p><strong>Mother:</strong> <em>Look, it doesn’t matter. This is the about the cheapest treatment for this disease available. And it’s almost universally prescribed. I’ve taken it for years and you need to cover it.</em></p>
<p><strong>CS:</strong> We don’t have to cover it because you inject it. We don’t cover things you inject at home.</p>
<p><strong>Mother:</strong> <em>It’s no one’s business how my doctor and I decide I’ll deliver it. It’s always been covered. If it were insulin, would you cover it?</em></p>
<p><strong>CS:</strong> But that’s a treatment for diabetes. Do you have diabetes?</p>
<p><strong>Mother:</strong> <em>No, but that’s exactly my point. RA is a disease like diabetes. And methotrexate is the treatment.</em></p>
<p>Mother made several other calls and the insurance company covered subsequent methotrexate prescriptions. <strong><em>Fast forward two years.</em></strong></p>
<p>Mother gets most of her prescriptions at CVS because Target hasn’t sent any coupons lately and… because the CVS pharmacist always seems willing and able to help figure out solutions. Whether it’s devising a <a  href="http://rawarrior.com/methotrexate-injections-for-rheumatoid-arthritis/">plan for easier methotrexate injections</a>, getting a priority antibiotic filled immediately, or ordering methotrexate to be sure it’s available during the shortage, this CVS pharmacy has provided exceptional service.</p>
<p><strong>Last week, the insurance company rejected the methotrexate prescription again – after two years of paying for it.</strong> The CVS pharmacist spent time on the phone arguing on behalf of Mother without success. But the pharmacist did not give up trying to help. Until the insurance company can again be persuaded that RA is a disease for which methotrexate is the standard treatment, the pharmacist sold the methotrexate with a discount. ~THE END~</p>
<p><em>I don’t know about you, but usually when I need something from a pharmacy, it’s because I’m sick. Which means something’s not right. Usually I’m in pain. Or worried about myself or one of my children. There have been countless times when I needed the pharmacy at a stressful time. Every time I’ve needed assistance, my local CVS pharmacist has been helpful and cheerful. That generous attitude filters down to staff as well. When I saw the <a  href="http://www.youtube.com/watch?v=W4Fehli05GI">Laura’s CVS commercial</a> recently, I couldn’t wait to talk about Kelly’s CVS!</em></p>
<p><img class="alignright size-full wp-image-9652" title="Kelly's CVS pharmacy sign" src="http://rawarrior.com/wp-content/uploads/2012/01/Kelly-CVS-pharmacy.jpg" alt="Kelly's CVS pharmacy sign" width="358" height="248" /><img class="alignright size-full wp-image-9653" title="Laura's CVS commercial" src="http://rawarrior.com/wp-content/uploads/2012/01/Laura-CVS.jpg" alt="Laura's CVS commercial" width="314" height="248" /></p>
<p><strong>Postblog:</strong> This story really happened to me! People who work for insurance companies or medical facilities can have the same problems that employers, neighbors, and disability judges do with comprehending that <a  href="http://rawarrior.com/we-refuse-to-be-mislabeled-updating-rheumatoid-arthritis-ra-to-rheumatoid-autoimmune-disease-rad/#not-a-type-of-arthritis">RA is a disease and not “a type of arthritis.”</a></p>
<h3>Recommended reading</h3>
<ul>
<li><strong><a  title="3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”" href="http://rawarrior.com/3-reasons-to-stop-saying-complications-of-rheumatoid-arthritis/">3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”</a></strong></li>
<li><strong><a  title="Methotrexate Injections for Rheumatoid Arthritis" href="http://rawarrior.com/methotrexate-injections-rheumatoid-arthritis/">Methotrexate Injections for Rheumatoid Arthritis</a></strong></li>
<li><strong><a  title="Methotrexate Injections for Rheumatoid Arthritis, part 2: Needles" href="http://rawarrior.com/methotrexate-injections-for-rheumatoid-arthritis/">Methotrexate Injections for Rheumatoid Arthritis, part 2: Needles</a></strong></li>
<li><strong><a  title="Permanent Link: We Refuse to Be Mislabeled: Updating Rheumatoid Arthritis (RA) to Rheumatoid Autoimmune Disease (RAD)" href="http://rawarrior.com/we-refuse-to-be-mislabeled-updating-rheumatoid-arthritis-ra-to-rheumatoid-autoimmune-disease-rad/">We Refuse to Be Mislabeled: Updating Rheumatoid Arthritis (RA) to Rheumatoid Autoimmune Disease (RAD)</a></strong></li>
</ul>
<div class="tweetthis" style="text-align:center;"><p> <a  target="_blank" class="tt" href="http://twitter.com/home/?status=Laura%E2%80%99s+CVS+Commercial+with+Kelly%E2%80%99s+CVS+and+the+%E2%80%9Ca%E2%80%9D+Word+http%3A%2F%2Frawarrior.com%2F%3Fp%3D9644" title="Post to Twitter"><img class="nothumb" src="http://rawarrior.com/wp-content/plugins/tweet-this/icons/en/twitter/tt-twitter-big4.png" alt="Post to Twitter" /></a> <a  target="_blank" class="tt" href="http://www.facebook.com/share.php?u=http://rawarrior.com/lauras-cvs-commercial-with-kellys-cvs-and-the-a-word/&#038;t=Laura%E2%80%99s+CVS+Commercial+with+Kelly%E2%80%99s+CVS+and+the+%E2%80%9Ca%E2%80%9D+Word" title="Post to Facebook"><img class="nothumb" src="http://rawarrior.com/wp-content/plugins/tweet-this/icons/en/facebook/tt-facebook-big4.png" alt="Post to Facebook" /></a> <a  target="_blank" class="tt" href="http://stumbleupon.com/submit?url=http://rawarrior.com/lauras-cvs-commercial-with-kellys-cvs-and-the-a-word/&#038;title=Laura%E2%80%99s+CVS+Commercial+with+Kelly%E2%80%99s+CVS+and+the+%E2%80%9Ca%E2%80%9D+Word" title="Post to StumbleUpon"><img class="nothumb" src="http://rawarrior.com/wp-content/plugins/tweet-this/icons/en/su/tt-su-big4.png" alt="Post to StumbleUpon" /></a></p></div>
	Tags: <a href="http://rawarrior.com/tag/methotrexate/" title="Methotrexate" rel="tag">Methotrexate</a>, <a href="http://rawarrior.com/tag/rheumatoid-arthritis-awareness/" title="Rheumatoid Arthritis awareness" rel="tag">Rheumatoid Arthritis awareness</a><br />
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		<slash:comments>31</slash:comments>
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		<title>Failed Experiment: Methotrexate &amp; Over the Counter Folic Acid</title>
		<link>http://rawarrior.com/failed-experiment-methotrexate-over-the-counter-folic-acid/</link>
		<comments>http://rawarrior.com/failed-experiment-methotrexate-over-the-counter-folic-acid/?show=comments</comments>
		<pubDate>Mon, 16 Jan 2012 11:00:37 +0000</pubDate>
		<dc:creator>Kelly Young</dc:creator>
				<category><![CDATA[Can we laugh now?]]></category>
		<category><![CDATA[Methotrexate]]></category>
		<category><![CDATA[Side effects for RA medicine]]></category>
		<guid isPermaLink="false">http://rawarrior.com/?p=9620</guid>
		<description><![CDATA[When I met my first rheumatologist, I left with a handful of prescriptions. One for folic acid. Really? Did I need a prescription for a vitamin? Doc said “to make sure it&#8217;s enough, yes, it’s a lot more than a daily allowance.” I already knew why over the counter supplements (OTC) are not considered as reliably [...]]]></description>
			<content:encoded><![CDATA[<p><img class="alignleft size-full wp-image-9623" title="Gift card ad" src="http://rawarrior.com/wp-content/uploads/2012/01/Gift-card-ad.jpg" alt="Gift card ad" width="278" height="225" />When I met my first rheumatologist, I left with a handful of prescriptions. One for folic acid. Really? Did I need a prescription for a vitamin? Doc said “to make sure it&#8217;s enough, yes, it’s a lot more than a daily allowance.”</p>
<p>I already knew why <a  href="http://rawarrior.com/consumer-reports-dangerous-supplements-list/">over the counter supplements (OTC) are not considered as reliably dosed</a> as prescriptions – because OTC products aren’t subject to the same quality control for measurement of ingredients as prescription products. Folic acid was just one more part of a whole program that started that day. No questions asked.</p>
<h3>Doubling down on folic acid with higher methotrexate doses</h3>
<p>When the methotrexate dose climbed to 25 mg and the Humira shot became a weekly occurrence, I constantly got small skin infections. Every little scratch became inflamed. When I plucked my eyebrows, they got sore and angry.</p>
<p>So, I told Dr. KBC and we doubled the folic acid dose to 2 mg per day. It worked like magic. I asked whether I might ever take more and doc was not sure. Two milligrams was okay, but no more.</p>
<h3>My folic acid prescription journey</h3>
<p>A couple of years later, Dr. Smart wrote the same scripts, no questions asked. I read more about folic acid for the blog or to answer other patients’ questions, but my own dose was unquestioned and unchanged for years. I learned that patients take different doses. And that some patients weren’t given any at all. Of course, they usually felt pretty sick and sought out my blog as a result…</p>
<p>When I lost Dr. Smart, I kept my refillable 90 day prescriptions. Until they expired…<br />
Dr. Good GP came to the rescue, submitting an identical folic acid prescription…<br />
Mail order maintenance pharmacy dropped the ball, losing the prescription…<br />
Kelly bought OTC folic acid at Walmart to tide herself over…</p>
<h3>Worse than useless: OTC folic acid</h3>
<p>For over two months, I took handfuls of OTC folic acid – and was more sick to my stomach from methotrexate than I’d ever been. I entertained all kinds of possibilities about what was turning my digestive system <em>black and white and red all over</em> – like an elephant joke &#8211; -</p>
<p><strong>An ant and an elephant were going on a motorbike. They had an accident. The elephant was seriously hurt on the head, but the ant was not. Why?</strong><br />
<em>Because the ant was wearing a helmet!</em></p>
<p>Finally, the prescription folic acid arrived! Within a few days, it worked like magic. I proved that the advice I’d given to patients a hundred times was positively right: ask your doctor about a folic acid prescription, just in case. Folic acid is the bike helmet for my stomach with methotrexate!</p>
<p><em>If your methotrexate dose makes you feel sick, talk to your doctor. </em></p>
<p>“A <a  href="http://www.medscape.com/viewarticle/588229" rel="nofollow">consensus for folic acid or folinic acid dosing</a> or administration does not exist, and the decision to initiate supplementation is physician-dependent.”</p>
<h3>Some bonus jokes to start your week with a smile!</h3>
<p><strong>What’s gray and comes in a red and white can?</strong><br />
<em>Campbell’s cream of elephant soup.</em></p>
<p><strong>What’s gray and comes in a bottle?</strong><br />
<em>Liquid elephant.</em></p>
<p><strong>What’s gray, black, and white?</strong><br />
<em>Sister Mary Elephant.</em></p>
<p><strong>What is beautiful, gray and wears glass slippers?</strong><br />
<em>Cinderelephant.</em></p>
<h3>Recommended reading</h3>
<ul>
<li><strong><a  title="Permanent Link to Rheumatoid Arthritis and Hair Loss" href="http://rawarrior.com/rheumatoid-arthritis-and-hair-loss/">Rheumatoid Arthritis and Hair Loss</a></strong></li>
<li><strong><a  title="Permanent Link to Folic Acid with Methotrexate: the Debate" href="http://rawarrior.com/folic-acid-with-methotrexate-the-debate/">Folic Acid with Methotrexate: the Debate</a></strong></li>
<li><strong><a  title="Permanent Link to The 1st Dose of Methotrexate for Rheumatoid Arthritis: 15 Questions" href="http://rawarrior.com/the-1st-dose-of-methotrexate-for-rheumatoid-arthritis-15-questions/">The 1st Dose of Methotrexate for Rheumatoid Arthritis: 15 Questions</a></strong></li>
<li><strong><a  href="http://rawarrior.com/methotrexate-and-rheumatoid-arthritis/part-6-checklist-manage-methotrexate-side-effects-rheumatoid-arthritis/"><strong>Part 6: Checklist for Moderating Methotrexate Side Effects in RA</strong></a></strong></li>
</ul>
<div class="tweetthis" style="text-align:center;"><p> <a  target="_blank" class="tt" href="http://twitter.com/home/?status=Failed+Experiment%3A+Methotrexate+%26+Over+the+Counter+Folic+Acid+http%3A%2F%2Frawarrior.com%2F%3Fp%3D9620" title="Post to Twitter"><img class="nothumb" src="http://rawarrior.com/wp-content/plugins/tweet-this/icons/en/twitter/tt-twitter-big4.png" alt="Post to Twitter" /></a> <a  target="_blank" class="tt" href="http://www.facebook.com/share.php?u=http://rawarrior.com/failed-experiment-methotrexate-over-the-counter-folic-acid/&#038;t=Failed+Experiment%3A+Methotrexate+%26+Over+the+Counter+Folic+Acid" title="Post to Facebook"><img class="nothumb" src="http://rawarrior.com/wp-content/plugins/tweet-this/icons/en/facebook/tt-facebook-big4.png" alt="Post to Facebook" /></a> <a  target="_blank" class="tt" href="http://stumbleupon.com/submit?url=http://rawarrior.com/failed-experiment-methotrexate-over-the-counter-folic-acid/&#038;title=Failed+Experiment%3A+Methotrexate+%26+Over+the+Counter+Folic+Acid" title="Post to StumbleUpon"><img class="nothumb" src="http://rawarrior.com/wp-content/plugins/tweet-this/icons/en/su/tt-su-big4.png" alt="Post to StumbleUpon" /></a></p></div>
	Tags: <a href="http://rawarrior.com/tag/methotrexate/" title="Methotrexate" rel="tag">Methotrexate</a>, <a href="http://rawarrior.com/tag/side-effects-for-ra-medicine/" title="Side effects for RA medicine" rel="tag">Side effects for RA medicine</a><br />
]]></content:encoded>
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		<slash:comments>38</slash:comments>
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		<title>Mission Impossible: Crowd Management with RA</title>
		<link>http://rawarrior.com/mission-impossible-crowd-management-with-ra/</link>
		<comments>http://rawarrior.com/mission-impossible-crowd-management-with-ra/?show=comments</comments>
		<pubDate>Wed, 23 Nov 2011 11:00:37 +0000</pubDate>
		<dc:creator>Kelly Young</dc:creator>
				<category><![CDATA[Can we laugh now?]]></category>
		<category><![CDATA[Living with chronic illness like RA]]></category>
		<category><![CDATA[Rheumatoid arthritis disability]]></category>
		<guid isPermaLink="false">http://rawarrior.com/?p=9242</guid>
		<description><![CDATA[Whether you take mass transit, work at a crowded office, or attend conferences like I have recently, managing in a crowd with RA is challenge. This may be one more mission impossible, should we choose to accept it… It’s hard to explain RA to anyone who hasn’t lived it. Have you ever had a sprained ankle [...]]]></description>
			<content:encoded><![CDATA[<p><em>Whether you take mass transit, work at a crowded office, or attend conferences like I have recently, managing in a crowd with RA is challenge. </em><em>This may be one more mission impossible, should we choose to accept it… </em></p>
<p><img class="alignleft size-full wp-image-9390" title="exit sign" src="http://rawarrior.com/wp-content/uploads/2011/11/exit-sign.jpg" alt="exit sign" width="400" height="300" />It’s hard to explain RA to anyone who hasn’t lived it. Have you ever had a sprained ankle or tennis elbow or carpel tunnel? Maybe a jammed finger or a broken toe? And then used it anyway? Living with RA is kind of like that – only for many of us, every joint is affected.</p>
<p>If I try to tell someone about this, I usually have to focus just as much on ignoring the eye-roll as I do on ignoring the pain. Just because I don’t say anything doesn’t mean I don’t notice the skepticism. And we can tell when you think we are exaggerating. After conversations with thousands of RA patients, I can tell you that <em>we are almost always doing the opposite</em>.</p>
<p>We can also tell when people do believe and care – like several beautiful souls I&#8217;ve met who said, “Tell me more about RA.” There was even a Mayo employee met me saying, with, “Well, everyone has arthritis.” After I explained the difference between “arthritis” and Rheumatoid Disease (which almost always has inflammatory arthritis as <em>one of the symptoms</em>), he said, “Oh! I’m sorry. I didn’t know.” A good step.</p>
<p>If we try to explain that meds don’t help much, then we recognize skepticism, even from doctors. “Are you sure about your diagnosis? You don&#8217;t look like you have RA&#8230;” <em>Yes</em>.</p>
<p>Sometimes, I try to give an illustration about how hard it is <em>to function in a group of healthy people</em>. Sometimes people with a disability, can feel invisible. Other times it&#8217;s hard because the disability is invisible. <em>Like most things, this makes me laugh now that time has passed</em>.</p>
<p><strong>Real-life example 1: Bio break</strong></p>
<p>At break time, a hundred women want to use the ladies room. I dread the walk. Women fly around me in the hallway. By the time I get there, the line is out the door. I wait in the line until it reaches the door. I ask, “Maybe I’ll sit in this chair until it’s my turn. Can I keep my place in line?” No one answers. I try to move the chair out from the counter. The chair falls over &amp; I’m down there with it, trying to figure it out. No one moves to help.</p>
<p><strong>Real example 2: Elevator at the airport</strong></p>
<p>Have you noticed the elevator is always further away than the escalator? We press the button &amp; wait between sets of elevators. When a door opens, 10 people rush in before I can take 2 steps in that direction. Can I also say that I’m terrified of elevator doors now – because I‘m not able rush passed them or push hard to make them re-open? So if we’re riding elevators together, could I please go through the doors first?</p>
<p><strong>How do you do with crowd management?</strong></p>
<h3>Recommended reading</h3>
<ul>
<li><strong><a  title="Permanent Link to Rheumatoid Arthritis Symptoms Not Alleviated by Disease Treatment" href="http://rawarrior.com/rheumatoid-arthritis-symptoms-not-alleviated-by-disease-treatment/">Rheumatoid Arthritis Symptoms Not Alleviated by Disease Treatment</a></strong></li>
<li><strong><a  title="Permanent Link to Hear My RA Interview on KISS FM! Plus Updates &amp; Coupons" href="http://rawarrior.com/hear-ra-interview-kiss-fm/">Hear My RA Interview on KISS FM!</a></strong></li>
<li><strong><a  title="Permanent Link to 20 Rheumatoid Arthritis Patient Facts I learned from RA Patients" href="http://rawarrior.com/20-rheumatoid-arthritis-patient-facts-i-learned-from-ra-patients/">20 Rheumatoid Arthritis Patient Facts I learned from RA Patients</a></strong></li>
<li><strong><a  title="Permanent Link to Rheumatoid Arthritis and Football Season" href="http://rawarrior.com/rheumatoid-arthritis-and-football-season/">Rheumatoid Arthritis and Football Season</a></strong></li>
</ul>
<div class="tweetthis" style="text-align:center;"><p> <a  target="_blank" class="tt" href="http://twitter.com/home/?status=Mission+Impossible%3A+Crowd+Management+with+RA+http%3A%2F%2Frawarrior.com%2F%3Fp%3D9242" title="Post to Twitter"><img class="nothumb" src="http://rawarrior.com/wp-content/plugins/tweet-this/icons/en/twitter/tt-twitter-big4.png" alt="Post to Twitter" /></a> <a  target="_blank" class="tt" href="http://www.facebook.com/share.php?u=http://rawarrior.com/mission-impossible-crowd-management-with-ra/&#038;t=Mission+Impossible%3A+Crowd+Management+with+RA" title="Post to Facebook"><img class="nothumb" src="http://rawarrior.com/wp-content/plugins/tweet-this/icons/en/facebook/tt-facebook-big4.png" alt="Post to Facebook" /></a> <a  target="_blank" class="tt" href="http://stumbleupon.com/submit?url=http://rawarrior.com/mission-impossible-crowd-management-with-ra/&#038;title=Mission+Impossible%3A+Crowd+Management+with+RA" title="Post to StumbleUpon"><img class="nothumb" src="http://rawarrior.com/wp-content/plugins/tweet-this/icons/en/su/tt-su-big4.png" alt="Post to StumbleUpon" /></a></p></div>
	Tags: <a href="http://rawarrior.com/tag/living-with-chronic-illness-like-ra/" title="Living with chronic illness like RA" rel="tag">Living with chronic illness like RA</a>, <a href="http://rawarrior.com/tag/rheumatoid-arthritis-disability/" title="Rheumatoid arthritis disability" rel="tag">Rheumatoid arthritis disability</a><br />
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		<slash:comments>27</slash:comments>
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		<title>Is That Your Final Answer? …or Replying to Misconceptions</title>
		<link>http://rawarrior.com/is-that-your-final-answer-replying-to-misconceptions/</link>
		<comments>http://rawarrior.com/is-that-your-final-answer-replying-to-misconceptions/?show=comments</comments>
		<pubDate>Fri, 28 Oct 2011 10:00:46 +0000</pubDate>
		<dc:creator>Kelly Young</dc:creator>
				<category><![CDATA[Can we laugh now?]]></category>
		<category><![CDATA[Reality Check]]></category>
		<category><![CDATA[Communicating about RA]]></category>
		<category><![CDATA[Humor with RA]]></category>
		<category><![CDATA[Talking to doctors]]></category>
		<guid isPermaLink="false">http://rawarrior.com/?p=9159</guid>
		<description><![CDATA[I wrote this post weeks ago when it had just happened. I imagined responses that are usually held back in polite conversation. Am I the only one who does that? What if it were a game show… It was a day filled with misconceptions about RA, and it really bothered me; but I didn’t figure [...]]]></description>
			<content:encoded><![CDATA[<p><a  href="http://rawarrior.com/wp-content/uploads/2011/10/Stop-Pain-spray.jpg"><img class="alignleft size-full wp-image-9163" title="Stop Pain spray" src="http://rawarrior.com/wp-content/uploads/2011/10/Stop-Pain-spray.jpg" alt="Stop Pain spray" width="300" height="320" /></a><em>I wrote this post weeks ago when it had just happened. I imagined responses that are usually held back in polite conversation. Am I the only one who does that? What if it were a game show…</em></p>
<p>It was a day filled with misconceptions about RA, and it really bothered me; but I didn’t figure out why until this morning. I hate being misunderstood and when it’s about RA, it bothers me more because I feel like I’m judged as a failure, a bad mother, an un-giving person, lazy, or dishonest. Just once, it can make me feel like I got kicked in the gut. Yesterday, I had that experience repeatedly.</p>
<p>Katie Beth and I were discussing a brief encounter with a doctor and we started laughing about how great it could be if I could put the truth of all of this into the book called it <em>Is That Your Final Answer</em>? Then we started laughing about how some game show lines fit life with RA. Laughing always helps.</p>
<p>But the day was much longer, and in the evening, I was finally at home in bed with a sheet over my head, in too much emotional pain to write and too much physical pain to do anything else.</p>
<p>Do you ever have these encounters where you know someone completely misunderstands? Do you just let it go unanswered, for whatever reason? I’m trying to come up with answers I could have used that day – unspoken answers?</p>
<h4>Vignette 1: Is that your final answer?</h4>
<p><strong>Nurse:</strong> “My best friend has RA, but she doesn’t take any of these medicines.”</p>
<p><strong>Me:</strong> “Does it disable her? That helps people decide. I mean when I went on the drugs, I couldn’t put my arms up at all to -”</p>
<p><strong>Nurse:</strong> “She has no choice. She is a single mom. She works and does everything for him in spite of RA because she puts him first. He’s in high school, but she wants him to have everything&#8230; (5 minutes more)”</p>
<p><strong>Answer UNSPOKEN:</strong> “People with RA really do get to a point when they <em>can’t</em> do some things. We still put our children first. It’s not our choice to have a disability either.”</p>
<h4>Vignette 2: You <em>are</em> the weakest link</h4>
<p><strong>Doc: “</strong>Twenty percent of women with inflammatory arthritis actually have a chronic pain syndrome instead of active disease. <em>It’s just pain, right</em>?”</p>
<p><strong>Me: </strong>“No, my joints are also stiff, swollen, grinding, weaken &#8211;”</p>
<p><strong>Doc:</strong> “But how much do you exercise?”</p>
<p><strong>Me:</strong> “Well I do as much as I can, but I can’t do a lot of things now. I used to lift 50lb. bags, but my joints-”</p>
<p><strong>Doc:</strong> “How do you sleep?”</p>
<p><strong>Me:</strong> “Like a rock.”</p>
<p><strong>Doc:</strong> “But you don’t feel rested, right?”</p>
<p><strong>Me:</strong> “No, morning is the best time of my day.”</p>
<p><strong>Doc:</strong> “Have you tried Tramadol or Cymbalta?”</p>
<p><strong>UNSPOKEN Answer:</strong>  “I have a fever every day. I have a fever right now in this cold office for 3½ hours. But you aren’t taking my temperature.  You haven’t ever examined my joints or read my chart. You seem to have a preconceived notion that you’re trying to fit me into. Apparently you can’t fathom this, but I have actually tried to do all of the things I say I can’t do. I didn’t just lie there and say ‘I can’t.’ I found out that I can’t because I tried, and I can’t. Perhaps the reason is that RA can inflame tendons and cause sudden weakness, stiffness, or instability. Whatever the reason is, I’ve gotten letters from hundreds of patients who experience the same things as me. And even if I were the only one, it’s still true.”</p>
<h4>Vignette 3: Let’s make a deal!</h4>
<p><strong>Identity withheld:</strong> “She has RA too. She can put up the tents and sleep on the ground. And still do everything.”</p>
<p><strong>Me:</strong> “I don’t know anything about her or if medicine helps her-”</p>
<p><strong>IW:</strong> “Her daughter has it too and she’s ok.”</p>
<p><strong>UNSPOKEN answer:</strong> “Let’s make a deal. I won’t assume you’re being insensitive if you don’t assume I’m being lazy.”</p>
<h3>Deal or No Deal</h3>
<p>Seriously, like most people with RA, I’d like someone to offer me a deal. Don’t most of us take whatever’s behind Door Number 3 or Curtain Number 2 (like medicines we’ve never tried before!) because <em>even though it’s unknown, it must be better than what we have</em>? If we wait hours every month at the pharmacy or medical appointments, when they call our name, it feels like an announcer on The Price is Right saying, “Kelly Young, Come on down!” Personally, I’d buy a vowel or a lifeline or anything that could possibly help me figure out this puzzle&#8230;</p>
<h3>I’m ready to say, “<em>I’ll take ‘SOLUTIONS’ for 1000, Alex</em>”</h3>
<p>How can someone judge whether I’m truly weak or just lazy from across a room? <strong>Or if they know nothing about my life?</strong> If I say I’m trying my hardest, how does anyone know that I’m not? Is living life with RA a sentence to living life doubted? I truly hope not, but I’ve been accused on both sides with occasional <a  href="http://rawarrior.com/local-rheumatoid-arthritis-support-groups/?show=comments#comment-85125">comments that hint</a>: “Do you expect us to believe you’re really sick and still blog?” to others who insist: “If you were willing to try, you could exercise and feel better.”</p>
<p>I don’t know; I’m just doing my best and assuming the same of everyone else with RA. We really need someone to give us the benefit of the doubt.</p>
<p>How about you? Any UNSPOKEN ANSWERS?</p>
<h3>Recommended reading</h3>
<ul>
<li><strong><a  href="http://rawarrior.com/20-things-not-to-say-to-a-rheumatoid-arthritis-patient/">20 Things Not to Say to a Rheumatoid Arthritis Patient</a></strong></li>
<li><strong><a  title="Health Blogging: Complications and Blessings" href="http://rawarrior.com/health-blogging-complications-and-blessings/">Health Blogging: Complications and Blessings</a></strong></li>
<li><strong><a  href="http://rawarrior.com/dont-take-those-meds-for-ra-or-juvenile-arthritis/">Don’t Take Those Meds for RA or Juvenile Arthritis</a></strong></li>
</ul>
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	Tags: <a href="http://rawarrior.com/tag/communicating-about-ra/" title="Communicating about RA" rel="tag">Communicating about RA</a>, <a href="http://rawarrior.com/tag/humor-with-ra/" title="Humor with RA" rel="tag">Humor with RA</a>, <a href="http://rawarrior.com/tag/talking-to-doctors/" title="Talking to doctors" rel="tag">Talking to doctors</a><br />
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		<title>Dear Healthcare Facility: We Love This But We Hate That</title>
		<link>http://rawarrior.com/dear-healthcare-facility-we-love-this-but-we-hate-that/</link>
		<comments>http://rawarrior.com/dear-healthcare-facility-we-love-this-but-we-hate-that/?show=comments</comments>
		<pubDate>Fri, 21 Oct 2011 10:00:42 +0000</pubDate>
		<dc:creator>Kelly Young</dc:creator>
				<category><![CDATA[Can we laugh now?]]></category>
		<category><![CDATA[Humor with RA]]></category>
		<category><![CDATA[Talking to doctors]]></category>
		<guid isPermaLink="false">http://rawarrior.com/?p=9149</guid>
		<description><![CDATA[None of us love a needle stick, but some technicians do it so well, you can hardly feel it. Last week, a woman took several vials of blood without even asking me to squeeze a damn rubber ball. It was the first time a nurse remembered I have RA and adjusted her procedure! Thank you! [...]]]></description>
			<content:encoded><![CDATA[<p><em><img class="alignleft size-full wp-image-9153" title="pain scale at pain doc" src="http://rawarrior.com/wp-content/uploads/2011/10/pain-scale-at-pain-doc.jpg" alt="pain scale at pain doc" width="224" height="224" />None of us love a needle stick, but some technicians do it so well, you can hardly feel it. Last week, a woman took several vials of blood without even asking me to squeeze a damn rubber ball. It was the first time a nurse remembered I have RA and adjusted her procedure! Thank you! (It helps that I have great big veins but I’m used to the eye roll because I won’t squeeze the ball hard enough. Don’t Like.)</em></p>
<p><em>I&#8217;d waited hour at the lab when they registered me as another Kelly Young. A receptionist asked 3 times, “But aren’t you Kelly <strong>M.</strong> Young?” “No.” When she realized I was sure, she <span style="text-decoration: underline;">apologized</span>. Another first for me. I hated the wasted time, but isn’t it much better when we can act like we&#8217;re all just people… WHO WILL BY THE WAY, ALL BE PATIENTS ONE DAY?</em><br />
<strong>1. Hate:</strong> Toilets low enough to be a toddler potty seat.<br />
<strong>2. Love:</strong> Healthcare workers who smile.<br />
<strong>3. Hate: </strong>Lab chairs so high up we are supposed to climb up on them. Lab chairs = high chairs. Again with the toddler thing.<br />
<strong>4. Love:</strong> Doctors &amp; nurses who answer our questions respectfully.<br />
<strong>5. Hate: </strong>Doors with the spring tightened so that we can’t open them. Especially if we need to come out of a room.<br />
<strong>6. Love:</strong> Anyone who says, “I’m sorry.”<br />
<strong>7. Hate:</strong> Medical assistants who insist they must know more about my disease than I do just because they work in a medical facility.<br />
<strong>8. Love:</strong> Employees who remember our names. <em>Or at least believe us when we tell them</em>.<br />
<strong>9. Hate:</strong> Dirty bathrooms. Dirty sinks. Dirty anything. Can we use more of high-priced healthcare to fight illness by fighting germs?<br />
<strong>10.Love:</strong> I want to bake muffins (if I could anymore) for anyone in healthcare who uses a gentle touch. Even a gentle handshake. Why is that so rare?</p>
<h3>What about you?</h3>
<p><em>I’ll bet you have some answers that are even funnier than mine – or more significant to your care. What do you wish a healthcare facility administrator would change TODAY?</em></p>
<h3>Recent happy surprises for RA Warrior!</h3>
<ol>
<li>RA Warrior was quoted in this <em>Prepared Patient Forum </em>piece “<a  href="http://blog.preparedpatientforum.org/blog/2011/07/accommodations-for-chronic-conditions/">Accommodations for Chronic Conditions</a>.”</li>
<li>RA Warrior was featured in <em><a  href="http://www.foxepractice.com/best-practices-healthcare-social-media/hcsm-scoop-week35/">Best Practices in Healthcare Social Media “Chair of Cheer”</a></em> <em>an honor not usually assigned to patients</em>.</li>
<li>RA Warrior was featured on the <em>Swaglove Blog</em> in “<strong><a  href="http://go.madmimi.com/redirects/a23b7e755f0adf28a7e6f0b883140469?pa=5263315615" target="_blank">How t-shirts helped create a community</a></strong>” telling how t-shirts are more than tools for awareness – they help create a sense of community so we know we’re not alone.</li>
</ol>
<h3>Recommended reading:</h3>
<ul>
<li><strong><a  title="Permanent Link: 10 Dumb Questions About an MRI for Rheumatoid Arthritis" href="http://rawarrior.com/10-dumb-questions-about-an-mri-for-rheumatoid-arthritis/">10 Dumb Questions About an MRI for Rheumatoid Arthritis</a></strong></li>
<li><strong><a  href="http://rawarrior.com/tag/humor-with-ra/">All the posts on this blog tagged “Humor.”</a></strong></li>
<li><strong><a  href="http://rawarrior.com/20-tips-for-managing-your-rheumatoid-arthritis-treatment/">20 Tips for Managing Your Rheumatoid Arthritis Treatment</a></strong></li>
<li><strong><a  href="http://rawarrior.com/iom-pain-report-relieving-pain-in-america-gets-mixed-reviews/?show=comments#comment-97976">A recent story by a reader that tells a story of trying to change the heart of one medical receptionist.</a></strong></li>
</ul>
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	Tags: <a href="http://rawarrior.com/tag/humor-with-ra/" title="Humor with RA" rel="tag">Humor with RA</a>, <a href="http://rawarrior.com/tag/talking-to-doctors/" title="Talking to doctors" rel="tag">Talking to doctors</a><br />
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		<title>Fears of Social Media: a Pre-Halloween Boogie Man Post</title>
		<link>http://rawarrior.com/fears-of-social-media-a-pre-halloween-boogie-man-post/</link>
		<comments>http://rawarrior.com/fears-of-social-media-a-pre-halloween-boogie-man-post/?show=comments</comments>
		<pubDate>Wed, 19 Oct 2011 10:00:57 +0000</pubDate>
		<dc:creator>Kelly Young</dc:creator>
				<category><![CDATA[Can we laugh now?]]></category>
		<category><![CDATA[Special Occasion]]></category>
		<category><![CDATA[Health care social media]]></category>
		<category><![CDATA[Humor with RA]]></category>
		<guid isPermaLink="false">http://rawarrior.com/?p=9133</guid>
		<description><![CDATA[I’m hoping this happy little post might help anyone who is on the fence about blogging or using other forms of internet 2.0 (meaning “interactive websites”) to communicate about healthcare. This article is part of an Advisory Board essay that I contributed to the Mayo Clinic Center for Social media to be used in a [...]]]></description>
			<content:encoded><![CDATA[<p><img class="alignleft size-full wp-image-9139" title="skeleton thinking" src="http://rawarrior.com/wp-content/uploads/2011/10/skeleton-thinking.jpg" alt="skeleton thinking" width="200" height="200" /><em>I’m hoping this happy little post might help anyone who is on the fence about blogging or using other forms of internet 2.0 (meaning “interactive websites”) to communicate about healthcare. This article is part of an <a  href="http://socialmedia.mayoclinic.org/about-3/advisory-board/">Advisory Board</a> essay that I contributed to the Mayo Clinic Center for Social media to be used in a handbook for members of the Social Media Health Network. By the way, as you read this, I’m at their largest annual meeting in Minnesota <strong>right now</strong>. Yes, I got a new coat. And I can’t wait to tell you all everything!! Meanwhile, enjoy my pre-Halloween boogie man post! I’m printing it out for my doc who loves Google, but is still skittish about Social Media.</em></p>
<h3 align="center">The Boogie Man Is Not on Social Media!</h3>
<p>One reason many give for avoiding social media is fear. There are several risks or negative possibilities that people imagine will befall them. While the possibility of negative consequences is real, it’s usually rare. Still there is a perception that a Boogie Man exists. He’s not under the bed like he was when we were six, but somewhere in Social Media Land.</p>
<p>Like the one under a child’s bed, the Social Media Boogie Man is actually an image that emerges based on a collection of indistinct fears. Fears can often be dispelled with more information. While a six year old won’t get up, turn on the light, and look under the bed, there are many ways that we can do that. We can examine social media and prepare ourselves to use it to improve healthcare, driving away the Boogie Man.</p>
<p>One suggestion I’ve given healthcare professionals who are anxious is to observe a new platform or community for a brief time before fully participating. As you ease into it, people in online communities usually like giving advice and will gladly explain the lingo that’s being used or update you about scheduled events. Here are some other specific ways you can prepare to use social media successfully.</p>
<p><strong><em>Please do try to…</em></strong></p>
<ol>
<li><strong>Be knowledgeable:</strong> Post useful, reliable information. Clever is cute, but you want to do more than attract attention; you want to build others’ confidence in your posts.</li>
<li><strong>Be good:</strong> Generous. Kind. Honest.</li>
<li><strong>Be yourself:</strong> Use social media the same way you’d use the telephone, an email, or a walk in the park.</li>
</ol>
<p><strong><em>Some surprising principles:</em></strong></p>
<ol>
<li><strong>Get off topic!</strong> People also love to talk about food, sports, or the weather. It’s okay to get off your healthcare topic so people can get to know you a little.</li>
<li><strong>Get mad</strong>! It’s all right to show some passion or emotion. It helps others know you’re being sincere.</li>
<li><strong>Mess up!</strong> Everyone makes mistakes anyway, so don’t think you have to wait until you can do this perfectly before you try.</li>
</ol>
<p><strong><em>Notice I did <span style="text-decoration: underline;">not</span> say:</em></strong></p>
<ol>
<li><strong>Be Mr. or Ms. Wonderful!</strong> Just be part of the conversation.</li>
<li><strong>Be ever –present.</strong> You don’t have to reveal everything or be online all the time.</li>
<li><strong>Practice medicine online. </strong>Most do not have that expectation of you anyway. <strong></strong></li>
</ol>
<p>I hope this eases some pressure or lessens some fears about using social media. The Boogie Man may be around somewhere, but I haven’t spotted him on Social Media lately. Mostly, I’ve met a lot of real people who are passionate about learning from others and improving healthcare.</p>
<h3 style="text-align: left;">Recommended reading</h3>
<ul>
<li><strong><a  title="Permanent Link to Who Are e-Patients? A Simple Explanation" href="http://rawarrior.com/who-are-e-patients-a-simple-explanation/">Who Are e-Patients? A Simple Explanation</a></strong></li>
<li><strong><a  title="Permanent Link to Patient Stories May Provide Real Help via Social Media" href="http://rawarrior.com/patient-stories-may-provide-real-help-via-social-media/">Patient Stories May Provide Real Help via Social Media</a></strong></li>
<li><strong><a  title="Permanent Link to Alice Goes to Jacksonville: Mayo Clinic Center for Social Media" href="http://rawarrior.com/alice-goes-to-jacksonville-mayo-clinic-center-for-social-media/">Alice Goes to Jacksonville: Mayo Clinic Center for Social Media</a></strong></li>
<li><strong><a  title="Permanent Link to The Fake Patient (fPatient) &amp; Patient Engagement on Drug Companies’ Sites" href="http://rawarrior.com/fake-patient-fpatient-patient-engagement-on-drug-companies-sites/">The Fake Patient (fPatient) &amp; Patient Engagement on Drug Companies’ Sites</a></strong></li>
<li><strong><a  title="Living with (RA) Rheum Disease Is Already Multitasking" href="http://rawarrior.com/living-with-ra-rheum-disease-is-already-multitasking/">Living with (RA) Rheum Disease Is Already Multitasking</a></strong></li>
</ul>
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	Tags: <a href="http://rawarrior.com/tag/health-care-social-media/" title="Health care social media" rel="tag">Health care social media</a>, <a href="http://rawarrior.com/tag/humor-with-ra/" title="Humor with RA" rel="tag">Humor with RA</a><br />
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		<title>“Fine Thanks, and You?” and 5 More Stupid Things I Say</title>
		<link>http://rawarrior.com/fine-thanks-and-you-and-5-more-stupid-things-i-say/</link>
		<comments>http://rawarrior.com/fine-thanks-and-you-and-5-more-stupid-things-i-say/?show=comments</comments>
		<pubDate>Wed, 17 Aug 2011 10:00:07 +0000</pubDate>
		<dc:creator>Kelly Young</dc:creator>
				<category><![CDATA[Can we laugh now?]]></category>
		<category><![CDATA[Communicating about RA]]></category>
		<category><![CDATA[Humor with RA]]></category>
		<category><![CDATA[Pain Tolerance / RA Stoicism]]></category>
		<guid isPermaLink="false">http://rawarrior.com/?p=8786</guid>
		<description><![CDATA[1) “Do you want your rubber duck?” The favorite rubber duck has a squeaker which lets water in. Squeezing the water out of that duck brings severe hand pain. Not quite as much as the softer Thomas squeaker toys. (And water also hides in the duck so it has to be squeezed for two days.) [...]]]></description>
			<content:encoded><![CDATA[<p><img class="alignright size-full wp-image-8791" title="green duck" src="http://rawarrior.com/wp-content/uploads/2011/08/green-duck.jpg" alt="green duck" width="235" height="246" /></p>
<h4>1) “Do you want your rubber duck?”</h4>
<p>The favorite rubber duck has a squeaker which lets water in. Squeezing the water out of that duck brings severe hand pain. Not quite as much as the <a  href="http://rawarrior.com/inflammation-and-thomas-the-tank-engine/">softer Thomas squeaker toys</a>. (And water also hides in the duck so it has to be squeezed for two days.)</p>
<h4>2) “I can do it myself.”</h4>
<p>The worst RA example is not a jar. For me, it’s window blinds. I have those faux wood blinds that are heavy and hard to stack. Every single time I wrap that cord around my hand and pull, I tell myself not to ever do that again.</p>
<h4>3) “I can be there at 9 a.m.”</h4>
<p>Not if I don’t get up by 5 a.m., I can’t. Why do I think I can wash my hair and get dressed in only two hours? Even though I’ve lost about a third of my hair since March, it takes longer every time.</p>
<h4>4) “Fine thanks, and you?”</h4>
<p>Occasionally, I get a letter or comment saying “I feel bad for others who suffer more than I do with RA. I can still do so much.” I think: <em>I know; me too</em>.</p>
<p>Meanwhile someone else says, “Why is your website full of people who can still run and ride a bike? I feel like I’m the only one like me.” <em>I know; me too</em>.</p>
<p>Whether it’s because of <a  href="http://rawarrior.com/fundamental-studies-of-rheumatoid-arthritis-genetics-genomics/">sub-types of the Rheumatoid itself or our genetic differences</a>, our experiences with the disease differ greatly, <em>even in the same patient over time</em>.</p>
<p>If we can be honest, this is how RA is. And we can and should fight our hardest to overcome, but still…<strong><em> it is what it is.</em></strong></p>
<p>It’s extremely frustrating to hear others talk about what they can do, assuming we can do it too, whether they have RA or not.</p>
<p>It’s hard to explain all this, and I <a  href="http://rawarrior.com/rheumatoid-arthritis-disease-may-be-the-scarlet-ra/">suspect most of us don’t try to</a>.</p>
<p>One of the harshest things, next to RA pain, is the assumption that we are somehow weak, lazy, exaggerating, or have a low pain tolerance.</p>
<p>So, instead of <em>saying</em> <em>what it is</em>, I say “I’m fine thanks” and save a lot of trouble.</p>
<h4>5) “Why does it hurt so much?”</h4>
<p>When I stay on ibuprofen and Lortab long enough to make a difference in the pain, it never fails: I start think I’m not very sick. Any more. Until I miss a dose. Then I’m mad.</p>
<h4>6) “Is this considered swollen?”</h4>
<p>When I was off of the methotrexate for a while, I had more swelling. Now, I sometimes forget what my joints looked like before RA. Until I try to put on shoes or a watch. A ring would not even enter my mind.</p>
<p><strong>Personal note:</strong> To make a long story short, my spine is a pain. I’ll try to clearly explain what I mean by that soon. If I seem to be absent, it’s because lately I’ve spent lots of time unable to sit or type. Staring at the ceiling is a special challenge, but today I need to push myself extra hard. Please send prayers and support as I drive away by 5 a.m. to take Roo for his hernia surgery. It should be a routine procedure and we’re praying it’s simple and easy.</p>
<p><strong>Edit 12/29/11:</strong> Roo&#8217;s surgery was in August when this post was first published. It went very well and he&#8217;s doing great! Since I got new coupons this week, I updated the coupon below to the current offer.</p>
<p><strong>One final thing:</strong> <em>I received a coupon this week to share with you. You can use it on anything from the <a  href="http://tshirt.rawarrior.com/">RA Warrior t-shirt store here.</a></em></p>
<p style="border: #f2680f 2px solid;"><strong>What:</strong> New Year&#8217;s Coupons<br />
<strong>Who:</strong> You and everyone you share it with.<br />
<strong>Coupon Code:</strong> NewYear$10<br />
Discount: $10 off all orders over $50.00!<br />
<strong>Coupon Code:</strong> NewYear$25<br />
Discount: $25 off subtotal of $100.00<br />
<em>Disclaimer: Please enter coupon code NewYear$10 or NewYear$25 before completing checkout. Discount is applied to the base price and does not include taxes, or additional charges. This offer may not be combined with other offers. Coupons valid from 12/27/2011 to 12/31/2011 11:59 pm Mountain Time.</em><br />
Dates: December 27 to December 31.</p>
<h3>Recommended reading</h3>
<ul>
<li><strong><a  title="Severe Rheumatoid Arthritis Versus Mild Rheumatoid Arthritis" href="http://rawarrior.com/severe-rheumatoid-arthritis-versus-mild-rheumatoid-arthritis/">Severe Rheumatoid Arthritis Versus Mild Rheumatoid Arthritis</a></strong></li>
<li><strong><a  title="Permanent Link to A Rheum Full of Contradictions" href="http://rawarrior.com/rheum-full-of-contradictions/">A Rheum Full of Contradictions</a></strong></li>
<li><strong><a  title="Permanent Link to Rheumatoid Arthritis Disease May Be the Scarlet RA" href="http://rawarrior.com/rheumatoid-arthritis-disease-may-be-the-scarlet-ra/">Rheumatoid Arthritis Disease May Be the Scarlet RA</a></strong></li>
</ul>
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		<title>RA is Tricksy: Wandering by The Two Towers</title>
		<link>http://rawarrior.com/ra-is-tricksy-wandering-by-the-two-towers/</link>
		<comments>http://rawarrior.com/ra-is-tricksy-wandering-by-the-two-towers/?show=comments</comments>
		<pubDate>Thu, 07 Jul 2011 16:30:31 +0000</pubDate>
		<dc:creator>Kelly Young</dc:creator>
				<category><![CDATA[Can we laugh now?]]></category>
		<category><![CDATA[Guest post on RA Warrior]]></category>
		<category><![CDATA[Humor with RA]]></category>
		<category><![CDATA[Living with chronic illness like RA]]></category>
		<guid isPermaLink="false">http://rawarrior.com/?p=8509</guid>
		<description><![CDATA[I hope you enjoy this little guest post from Dana. Her imagination wanders in a way that’s similar to some other fun trips we’ve taken with Goldilocks, the Princess and the Pea, and others. Please visit Dana’s blog; she’s been a great ally to our effort here for a long time and significant voice of [...]]]></description>
			<content:encoded><![CDATA[<p><em>I hope you enjoy this little guest post from Dana. Her imagination wanders in a way that’s similar to some other fun trips we’ve taken with <a  href="http://rawarrior.com/a-fairy-tale-for-rheumatoid-arthritis-warriors/">Goldilocks</a>, the <a  href="http://rawarrior.com/encountering-signs-of-rheumatoid-arthritis-a-modern-princess-and-the-pea/">Princess and the Pea</a>, and others. Please visit <a  href="http://waters-edge.blogspot.com/">Dana’s blog</a>; she’s been a great ally to our effort here for a long time and significant voice of hope and reason and humor.</em></p>
<h3>A funny thing happened on way to see <em>The Two Towers</em></h3>
<p><img class="alignleft size-full wp-image-8512" title="firey Rheumatoid Arthritis ring" src="http://rawarrior.com/wp-content/uploads/2011/07/firey-RA-ring.jpg" alt="firey Rheumatoid Arthritis ring" width="193" height="162" />When having a discussion about RA the other day, I suddenly had this vision of Gollum from <em>The Lord of the Rings</em> in my head. (I’m sure it had nothing to do with the fact that we were headed that night to see the director’s cut of <em>The Two Towers</em> at our local theater.) If you’re unfamiliar with <em>The Lord of the Rings</em>, Gollum is a creature who was once a human-like hobbit, but his one-time possession of “The Ring” and all-consuming lust for getting it back eventually left him as little more than a goblin-like skeleton of a being. At one point in the movie, <em>The Two Towers</em>, Gollum is arguing with himself over the trustworthiness of the hobbits he’s with, and I picture him saying this in his raspy, whiny voice:</p>
<h3>“Sneaky little <del>hobbitses </del>RA. Wicked, tricksy, false!”</h3>
<p>I don’t know about you, but I think those words about Rheumatoid Arthritis quite often. RA is sneaky. You may feel fine one day, and wake up the next day hardly able to get out of bed. Symptoms come on suddenly, often when you’re least expecting it. It comes on without warning, yet somehow slinks to the shadows during doctor’s visits (the physician presence effect?). It may feel bad, but not look bad. You may have symptoms, but not the blood work to verify your diagnoses. It’s sneaky all right.</p>
<h3>RA is very “tricksy” too.</h3>
<p>I think the “tricksiest” part about Rheumatoid Arthritis is that it seldom looks or acts consistently. It’s different for each person, and it’s different within each person day to day or over time. Read all of the RA onset stories and you’ll notice that no two of them are alike. Different symptoms manifest in different patients. There is a broad range in the severity of the disease and how quickly it progresses. Some treatments work great for some people with RA; different treatments work well for other patients; some patients aren’t helped by any current treatments. Sometimes moving makes you feel better; sometime moving makes you feel worse. For some, the symptoms come and go, in a series of flares and lulls without any apparent rhyme or reason. For others, it’s a constant state of flare, with no real relief in sight. Some people can identify triggers for their flares, but again, it’s not the same for everybody.</p>
<p>It’s no wonder RA is so difficult to diagnose and treat. Until we truly have an understanding of this disease (or possibly group of diseases?) it will be impossible to appropriately treat each case. My hope is that, through research, we can come to understand the “tricksy” nature of Rheumatoid Arthritis and learn to beat it at its own “trickses.”</p>
<h3>What “trickses” has Rheumatoid Arthritis been playing on you lately?</h3>
<h3>Recommended reading</h3>
<ul>
<li><strong><a  title="Permanent Link to A Fairy Tale for Rheumatoid Arthritis Warriors" href="http://rawarrior.com/a-fairy-tale-for-rheumatoid-arthritis-warriors/">A Fairy Tale for Rheumatoid Arthritis Warriors</a></strong></li>
<li><strong><a  title="Permanent Link: Encountering Signs of Rheumatoid Arthritis: A Modern Princess and the Pea" href="http://rawarrior.com/encountering-signs-of-rheumatoid-arthritis-a-modern-princess-and-the-pea/">Encountering Signs of Rheumatoid Arthritis: A Modern Princess and the Pea</a></strong></li>
<li><strong><a  title="Permanent Link: My Quest for Answers to Questions About Rheumatoid Arthritis" href="http://rawarrior.com/my-quest-for-answers-to-questions-about-rheumatoid-arthritis/">My Quest for Answers to Questions About Rheumatoid Arthritis</a></strong></li>
<li><strong><a  title="Permanent Link to Airport, Storms, and DMV: April Fool’s!" href="http://rawarrior.com/airport-storms-and-dmv-april-fools/">Airport, Storms, and DMV: April Fool’s!</a></strong></li>
</ul>
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	Tags: <a href="http://rawarrior.com/tag/guest-post-on-ra-warrior/" title="Guest post on RA Warrior" rel="tag">Guest post on RA Warrior</a>, <a href="http://rawarrior.com/tag/humor-with-ra/" title="Humor with RA" rel="tag">Humor with RA</a>, <a href="http://rawarrior.com/tag/living-with-chronic-illness-like-ra/" title="Living with chronic illness like RA" rel="tag">Living with chronic illness like RA</a><br />
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		<title>Elephant Jokes for a Happy Two Year Birthday RA Warrior</title>
		<link>http://rawarrior.com/elephant-jokes-for-a-happy-two-year-birthday-ra-warrior/</link>
		<comments>http://rawarrior.com/elephant-jokes-for-a-happy-two-year-birthday-ra-warrior/?show=comments</comments>
		<pubDate>Thu, 19 May 2011 10:00:17 +0000</pubDate>
		<dc:creator>Kelly Young</dc:creator>
				<category><![CDATA[Can we laugh now?]]></category>
		<category><![CDATA[Special Occasion]]></category>
		<category><![CDATA[Humor with RA]]></category>
		<category><![CDATA[Talking to doctors]]></category>
		<guid isPermaLink="false">http://rawarrior.com/?p=8270</guid>
		<description><![CDATA[One reason I love elephants is they remind me of my goal: To become extremely old and gray and much wrinkled, like a good elephant. As you read this, I’m hopefully finding a rheumatologist to help me do that. Elephant jokes to celebrate. Why don’t African elephants like to play cards? Because of all the [...]]]></description>
			<content:encoded><![CDATA[<p><img class="alignright size-full wp-image-8272" title="laughing elephant" src="http://rawarrior.com/wp-content/uploads/2011/05/laughing-elephant.jpg" alt="laughing elephant" width="306" height="300" />One reason I love elephants is they remind me of my goal: To become extremely old and gray and much wrinkled, like a good elephant. As you read this, I’m hopefully finding a rheumatologist to help me do that.</p>
<h4><em>Elephant jokes to celebrate.</em></h4>
<p>Why don’t African elephants like to play cards?<br />
Because of all the cheetahs.</p>
<p>It wasn’t much of a party yesterday for the birthday. I talked with the Chief Operating Officer of the hospital who made the original <a  href="http://rawarrior.com/new-reading-of-the-nuclear-bone-scan-credibility-is-everything/">report on my bone scan</a>. He explained their peer review process means that the radiology firm who made the errors is the only one qualified to decide whether errors were made. Do you think a firm, polite conversation with me changed his mind?</p>
<p>Today, the radiologist called to say he stands by his claim that my bone scan is perfectly healthy. They cast aspersions on the second opinion since the independent firm is not part of the hospital.</p>
<h4><em>Comic relief elephant joke break:</em></h4>
<p>Where do elephants with skin problems go?<br />
Pachydermatologists.</p>
<p>Too bad I can’t go to a pachydermatologist.</p>
<p>I really don’t want to go through this again with a rheumatologist. Like many readers who write to me, I don’t relish being told by another doctor that I don’t “look like” I have RA. We all know people who won’t go to the rheum doc anymore and I understand.</p>
<p>You go to the doctor to get medicine. But why go when the prescriptions don’t bring any relief?</p>
<p>I guess because there’s another reason to go. <strong>If you have RA, you go to the rheumatologist to help you monitor progress of the disease so you can take better care of yourself.</strong> It amounts to <a  href="http://rawarrior.com/tag/preventive-care-with-rheumatoid-arthritis/">preventive care</a>. Since I hate hypocrisy, I have to practice what I preach, and go to another rheumatologist.</p>
<p>But you won’t mind if I’m honest about how I feel, right? Frustrated. Weary. Uneasy.</p>
<p>I hate mentioning significant symptoms and being told “You don’t have that because it’s rare” or “Your RA is in remission.” People call or write me and tell me that it’s not worth the risk to have another doctor raise their eyebrow and make them feel foolish. I’m only trying to protect my own health and life.</p>
<p>The last time I tried to ask a question, I got a certified <a  href="http://rawarrior.com/my-doctor-fired-me/">letter dismissing me</a>. Regular readers and good friends know I’m the polite compliant <a  href="http://rawarrior.com/21-things-to-know-about-finding-a-new-rheumatologist-rheumatoid-arthritis-specialist/">patient who brings muffins</a> to show appreciation to the staff. I don’t risk offending rheumatologists by letting them know I read journal articles or write a blog. But none of that has helped.</p>
<h4><em>Maybe telling an elephant joke would.</em></h4>
<p>Why did the elephant fall out of the tree?<br />
She slipped.<br />
Why did the second elephant fall out of the tree?<br />
He was glued to the first one.<br />
Why did the third elephant fall out of the tree?<br />
He thought it was a game.<br />
Why did the fourth elephant fall out of the tree?<br />
Because when his mother asked “If all your friends jumped out of a tree, would you?” he said “Yes!”<br />
Why did the tree fall down?<br />
It thought it was an elephant.</p>
<p>I’ll let you know how it goes.</p>
<h3>Recommended reading</h3>
<ul>
<li><strong><a  title="My Doctor Fired Me" href="http://rawarrior.com/my-doctor-fired-me/">My Doctor Fired Me</a></strong></li>
<li><strong><a  title="New Reading of the Nuclear Bone Scan: Credibility is Everything" href="http://rawarrior.com/new-reading-of-the-nuclear-bone-scan-credibility-is-everything/">New Reading of the Nuclear Bone Scan: Credibility is Everything</a></strong></li>
<li><strong><a  title="Permanent Link to Meeting the New Rheumatoid Arthritis Specialist" href="http://rawarrior.com/meeting-the-new-rheumatoid-arthritis-specialist/">Meeting the New Rheumatoid Arthritis Specialist</a></strong></li>
</ul>
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		<title>Airport, Storms, and DMV: April Fool’s!</title>
		<link>http://rawarrior.com/airport-storms-and-dmv-april-fools/</link>
		<comments>http://rawarrior.com/airport-storms-and-dmv-april-fools/?show=comments</comments>
		<pubDate>Fri, 01 Apr 2011 15:51:45 +0000</pubDate>
		<dc:creator>Kelly Young</dc:creator>
				<category><![CDATA[Can we laugh now?]]></category>
		<category><![CDATA[Living with chronic illness like RA]]></category>
		<guid isPermaLink="false">http://rawarrior.com/?p=7963</guid>
		<description><![CDATA[April Fool’s Day held a surprise party by coming one day early this year for Katie Beth and me. We both fell asleep on our laptops last night without getting any work done. This morning, I see that before she fell asleep, she posted her Facebook status: “This day was UNREAL. Somebody wake me up. I [...]]]></description>
			<content:encoded><![CDATA[<p><em>April Fool’s Day held a surprise party by coming one day early this year for Katie Beth and me.</em></p>
<p><img class="alignleft size-full wp-image-7969" title="&quot;I am e&quot; Kelly" src="http://rawarrior.com/wp-content/uploads/2011/04/I-am-e-Kelly.jpg" alt="Kelly in I am &quot;e&quot;shirt" width="250" height="306" />We both fell asleep on our laptops last night without getting any work done. This morning, I see that before she fell asleep, she posted her Facebook status: “<strong><em>This day was UNREAL. Somebody wake me up. I am so tired.</em></strong>”</p>
<p>With the big storms in Florida, she spent yesterday trying to fly home from Spring Break with her big sis at Belhaven College. She spent 5 hours on an airplane for a 1.5 hour flight and then almost three hours waiting for her luggage to be taken off the plane. They didn’t give them anything after the peanuts and 4 ounces of Coke early in the day and the air conditioning was off much of the time. You get the idea.</p>
<p>Meanwhile, Bear and I tried again with the DMV. He got his learner’s license after only one hour, but they shredded it because the computer over-charged me about 7 dollars. I offered to over-pay so that I could leave for the airport, but that sent up a flag that I might be in a hurry. <em>A “no-no” at the DMV as most Americans know. Never let ‘em see ya sweat.</em></p>
<p>After another hour and a half, we finally left the DMV <em>with</em> Bear’s license, but <em>without</em> renewing mine, due to a missing Social Security card. I dropped off Bear at home to watch over his brothers and set out into the tornado warnings to retrieve Katie Beth.</p>
<p><strong><em>On the Beeline, I drove into the driving rain. Can I say that? </em></strong>For several minutes at a time, I couldn’t see out of the Suburban on any side. Flashing lights and reducing speed. A few cars pulled over onto the shoulder, but two charged passed me at about 50 mph. I slid sideways about 5 feet; I think they call that hydroplaning.</p>
<p><strong><em>At the airport, I saw Katie Beth wave through a window! </em></strong>But I had to circle through the tunnel in the line of traffic until they gave her the luggage. I lost count at 15 times around. My NSAIDs wore off about number 4. I didn’t dare risk Lortab driving in that weather; it sometimes makes me groggy.</p>
<p>My wrists were the first to complain. An avalanche of joints followed. Ankles, knees, hips. Omygosh – toes! My hands were already sore from holding on so tight in the storm. Elbows are never left out. I drove 3 hours straight in the storm without stopping except for the 2 minutes when Katie Beth threw her luggage in. That’s on top of the DMV trip earlier.</p>
<p><strong><em>I feel like a truck drove over me. And then the driver got out and beat me for getting in the way. I apologize to all the nice truck drivers. I’ve even heard from two who have RA&#8230;</em></strong></p>
<h4>No Fooling: More important things</h4>
<p><img class="alignleft size-full wp-image-7970" title="Back of I am an epatient shirt" src="http://rawarrior.com/wp-content/uploads/2011/04/epatient-shirt-back.jpg" alt="Back of I am an epatient shirt" width="301" height="402" />There have been some much more important blogs over the last couple of weeks. I hope you’ll read any you missed. It’s so important that you view the <a  href="http://rawarrior.com/men-rheumatoid-arthritis-video-psa/">Men and RA Video Public Service Announcement</a> so that YouTube will recognize its value, helping spread RA awareness.</p>
<p>Also, a week ago I shared a difficult situation regarding my requests for a 2<sup>nd</sup> opinion of a bone scan in a post called <a  href="http://rawarrior.com/my-doctor-fired-me/">My Doctor Fired Me</a>. <strong><em>Note that there has already been a 2<sup>nd</sup> opinion and the entire thing was <a  href="http://rawarrior.com/new-reading-of-the-nuclear-bone-scan-credibility-is-everything/">posted yesterday in an update</a>. </em></strong>I hope you’ll look at that carefully. It’s not a comprehensive picture of my extensive RA since the scans were poorly performed, but the results are still stunning.</p>
<h3>Note to medical professionals</h3>
<p>Finally, I’m aware that there are numerous medical professionals who are reading. Some are you are also RA patients and many of you are incognito. To those who do not have RA: There are misstatements being made online regarding RA and my story. Please read <a  href="http://rawarrior.com/tag/nuclear-bone-scan/">my story as told by me on this site</a>. If you have questions, please email me; I’d be glad to talk with you personally. Please do not accept accounts of my case found elsewhere online without confirming them.<strong></strong></p>
<h4>New Tag: <a  href="http://rawarrior.com/tag/nuclear-bone-scan/">All of the posts about Nuclear Bone Scans</a></h4>
<p><strong>Recommended reading</strong></p>
<ul>
<li><a  title="Permanent Link to New Reading of the Nuclear Bone Scan: Credibility is Everything" href="http://rawarrior.com/new-reading-of-the-nuclear-bone-scan-credibility-is-everything/"><strong>New Reading of the Nuclear Bone Scan: Credibility is Everything</strong></a></li>
<li><a  title="Sleep Quality Affects Disability in Rheumatoid Arthritis" href="http://rawarrior.com/sleep-quality-affects-disability-in-rheumatoid-arthritis/"><strong>Sleep Quality Affects Disability in Rheumatoid Arthritis</strong></a></li>
<li><a  title="Should Chronic Pain Patients Be Treated in the ER?" href="http://rawarrior.com/should-chronic-pain-patients-be-treated-in-the-er/"><strong>Should Chronic Pain Patients Be Treated in the ER?</strong></a></li>
</ul>
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