tag:blogger.com,1999:blog-75932950361044910392024-02-07T16:14:50.979-08:00A Rheumatoid Patient's Patience: Living with Rheumatoid DiseaseShannon Ragland Lakehttp://www.blogger.com/profile/14307983427828671576noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-7593295036104491039.post-18982019625963178362014-02-01T17:04:00.001-08:002014-02-02T12:01:19.152-08:00What Would Rheumatoid Awareness Mean To Me?<span style="font-size: large;"><a href="http://rheum4us.org/what-is-rheumatoid-awareness-day/" style="font-family: Arial;" target="_blank">Rheumatoid Awareness Day</a><span style="font-family: Arial;"> </span><span style="font-family: Arial;">is Feb. 2! </span><span style="font-family: Arial;"> </span><a href="http://rawarrior.com/what-would-rheumatoid-awareness-mean-to-you/" style="font-family: Arial;" target="_blank">RA Warrior</a><span style="font-family: Arial;"> </span><span style="font-family: Arial;">is featuring a </span><a href="http://rawarrior.com/what-would-rheumatoid-awareness-mean-to-you/" style="font-family: Arial;" target="_blank">Blog Carnival</a><span style="font-family: Arial;"> to invite other Rheumatoid Patient bloggers to add our voice for awareness of this </span><span style="font-family: Arial;">chronic, systemic, incurable autoimmune diseas</span></span><span style="font-family: Arial; font-size: large;">e.</span><span style="font-family: Arial; font-size: large;"> </span><br />
<span style="font-family: Arial; font-size: large;"><br /></span>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7cMvQuxegB_6nNzcBcIbV_rY3YHxDsPAyRCDxXPscegANZrivGTQkbEDmHoZnLQ9SRZttGvWK8P9EnVdA-OAwk0vuI0APLeKxtNkGPymiioqmZNNn0YJ0DyEXw6SgAAoJfLeKZIwDTg/s1600/RA-info.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7cMvQuxegB_6nNzcBcIbV_rY3YHxDsPAyRCDxXPscegANZrivGTQkbEDmHoZnLQ9SRZttGvWK8P9EnVdA-OAwk0vuI0APLeKxtNkGPymiioqmZNNn0YJ0DyEXw6SgAAoJfLeKZIwDTg/s1600/RA-info.jpg" height="274" width="320" /></a><span style="font-family: Arial; font-size: large;">The first and most important thing that would be different if every one on the planet were aware of Rheumatoid Disease (aka Rheumatoid Arthritis) is that there would be more money for research. More research would lead to better treatments and hopefully, a cure. There is no cure for RD.</span><br />
<br />
<span style="font-size: large;"><span style="font-family: Arial;">On a more fundamental level, if physicians and other healthcare providers were more aware, it would lead to earlier diagnosis, better patient care, and better outcomes. Having to fight for good care is incredibly frustrating, and for many patients, is stymied by the shortage of rheumatologists in their area. Pediatric rheumatologists, like the one who diagnosed me, are very rare. Many pediatric Rheumatoid patients have to travel to see their doctor; some families move for better care for their children with Rheumatoid disease.</span><br />
<span style="font-family: Arial;"></span><br /><span style="font-family: Arial;">On an interpersonal note, if Rheumatoid patients enjoyed awareness among our loved ones and strangers alike, we wouldn’t have <a href="http://rawarrior.com/rheumatoid-awareness-judgmental-eye-rolls-versus-help-compassion/" target="_blank">to fight ignorance, judgments, and drama</a> at home and out in the world. </span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnhSOh3JWNL6EacDKlm4DEEfXX5shahuy0jouqP19EcaCruDtiOr4cNIhtQVNKAjLNhfmoCYi9JCZ2LzrlY2XBxUXXaZsy4aeMRnWN1RMDcTUy0E7_CBRv2k0cvRetqYzM0WhdHOsjPg/s1600/RAD-GH.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnhSOh3JWNL6EacDKlm4DEEfXX5shahuy0jouqP19EcaCruDtiOr4cNIhtQVNKAjLNhfmoCYi9JCZ2LzrlY2XBxUXXaZsy4aeMRnWN1RMDcTUy0E7_CBRv2k0cvRetqYzM0WhdHOsjPg/s1600/RAD-GH.png" height="227" width="320" /></a></div>
<span style="font-size: large;"><span style="font-family: Arial;">We would have more help and more understanding from our partners, spouses, children, families, coworkers, and community. We wouldn't face invalidating comments like "you're too young" or "you should try such-and-such home remedy." We wouldn’t have an abnormally high divorce rate on top of the tremendous difficulty of living with Rheumatoid Disease.</span></span><br />
<span style="font-size: large;"><span style="font-family: Arial;"><br /></span></span>
<span style="font-size: large;"><span style="font-family: Arial;">In the four years since I began actively promoting awareness of my disease, speaking out as a patient, and advocating for Rheumatoid patients, I have seen the tide start to turn. In my 30th year with Rheumatoid Disease, I have great hope for a future in which all of these will become a reality.</span></span>
<span style="font-size: large;"><span style="font-family: Arial;"><br /></span></span>
<br />
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<span style="font-family: Arial; font-size: large;">Carry on!</span><br />
<span style="font-family: Arial; font-size: large;">Shannon</span><br />
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<div class="separator" style="clear: both; text-align: center;">
<span style="clear: left; float: left; font-size: large; margin-bottom: 1em; margin-right: 1em;"><a href="http://rheum4us.org/what-is-rheumatoid-awareness-day/" target="_blank"><img alt="Rheumatoid Awareness Day is Feb. 2! Click for info!" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQCS13h1yudIUGsLWVIjWbD1pwgEO_7qrVGptsOVZKTHlxlQN4lO2Z8whUcIvHeeOYpIdTsqYfY_DjUZeGoTkx9pWbdBLQWRMdRRdPDGeIZT0ODFkmNTTA31QVNHtiK_LmjjUmu_JkXg/s1600/Rheumatoid-Awareness-Day-Feb-2.png" height="79" title="" width="640" /></a></span></div>
<span style="font-size: large;"><span style="font-family: Arial;"></span><br /></span><span style="font-family: Arial; font-size: large;">P.S. - Check out other bloggers participating in <a href="http://rawarrior.com/what-would-rheumatoid-awareness-mean-to-you/" target="_blank">RAWarrior’s Blog Carnival</a>. Express your support by changing your social media profiles to increase awareness of Rheumatoid Disease (aka Rheumatoid Arthritis). <a href="http://rheum4us.org/rheumatoid-arthritis-resources/rheumatoid-awareness-images/" target="_blank">Take a look here to find graphics</a> you can save and use in your social media profiles to spread awareness of this 2nd annual event! </span><br />
<div>
<span style="font-family: Arial; font-size: large;"><br /></span></div>
<div>
<span style="font-family: Arial; font-size: large;">It’s easy to <a href="https://www.facebook.com/events/435138783279117/" target="_blank">spread awareness on Facebook by joining the online event</a> and sharing to your FB profile! You can also <a href="http://twibbon.com/support/rheumatoid-disease-awareness" target="_blank">add an RD ribbon to your Twitter and Facebook profile picture</a>.</span><br />
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<span style="font-family: Arial; font-size: large;"><br /></span></div>
<div>
<span style="font-family: Arial; font-size: large;">Importantly, you can <a href="http://rheum4us.org/give-now-to-double-your-donation-double-your-impact/" target="_blank">make a donation to the RPF to be matched by Crescendo Bioscience</a>. No donation is too small to help make a difference!</span><br />
<span style="font-family: Arial; font-size: large;"><br /></span>
<span style="font-family: Arial; font-size: large;">Press Release for Rheumatoid Awareness Day: <a href="http://rheum4us.org/press-release-rheumatoid-arthritis-awareness-day">http://rheum4us.org/press-release-rheumatoid-arthritis-awareness-day</a> </span></div>
</div>
Shannon Ragland Lakehttp://www.blogger.com/profile/14307983427828671576noreply@blogger.com3tag:blogger.com,1999:blog-7593295036104491039.post-53666606984622957702014-01-26T11:49:00.000-08:002014-01-26T12:25:44.076-08:00The Best-Laid Plans<span style="background-color: #f9f9f9; font-family: Helvetica; font-size: large;">"The best-laid schemes o' mice an' men</span><br />
<span style="background-color: #f9f9f9; font-family: Helvetica; font-size: large;">Gang aft agley…” </span><br />
<span style="font-size: large;"><span style="background-color: #f9f9f9; font-family: Helvetica;">- Robert Burns, </span><span style="font-family: Helvetica;">"To a Mouse, on Turning Her Up in Her Nest with the Plough,” 1785</span></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj47yrSTL1ZN3mNmF9NdRhR8kIdvjVR4WCdmXHYJ_VFfI57nvpQwBeZwoJ34UTELh6c57LtdpTJv_FLeBiOXW4vVL9t-Cy9l3Y29xnhL7dlZwGY1BuLmUPC2hMAQC-L12MZLVZECgBB8g/s1600/blogger-image-1577125408.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj47yrSTL1ZN3mNmF9NdRhR8kIdvjVR4WCdmXHYJ_VFfI57nvpQwBeZwoJ34UTELh6c57LtdpTJv_FLeBiOXW4vVL9t-Cy9l3Y29xnhL7dlZwGY1BuLmUPC2hMAQC-L12MZLVZECgBB8g/s320/blogger-image-1577125408.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hibernating with my sweet rescue Basset girl</td></tr>
</tbody></table>
<span style="font-size: large;"><span style="font-family: Arial;"></span><br /></span>
<span style="font-family: Arial; font-size: large;">The above quote paraphrased in English reads, “The best-laid plans of mice and men often go awry.” </span><br />
<span style="font-size: large;"><span style="font-family: Arial;"></span><br /></span>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj47yrSTL1ZN3mNmF9NdRhR8kIdvjVR4WCdmXHYJ_VFfI57nvpQwBeZwoJ34UTELh6c57LtdpTJv_FLeBiOXW4vVL9t-Cy9l3Y29xnhL7dlZwGY1BuLmUPC2hMAQC-L12MZLVZECgBB8g/s640/blogger-image-1577125408.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-size: large;"></span></a><span style="font-family: Arial; font-size: large;">I’ve been away from my blog for many months. To be sure, many bloggers find themselves in a similar situation. When life is happening and you are sick every day, something has to give in order that you may meet your personal obligations. Often that which is not crucial to survival gets ignored.</span><br />
<span style="font-size: large;"><span style="font-family: Arial;"></span><br /></span>
<span style="font-family: Arial; font-size: large;">I have managed to continue to participate in the conversations on Facebook and Twitter, but I am reminded that social media platforms may come and go, but blogging will remain.</span><br />
<span style="font-size: large;"><span style="font-family: Arial;"></span><br /></span>
<span style="font-family: Arial; font-size: large;">In this, my 30th year with Rheumatoid Disease, I am excited about the plans I have for this space. Not only is a redesign and move to WordPress on RheumatoidPatient.com on the way, but my Evernote account boasts quite a list of topics and private rants waiting to be fleshed out and polished for public consumption. </span><br />
<span style="font-size: large;"><span style="font-family: Arial;"></span><br /></span>
<span style="font-family: Arial; font-size: large;">Every week there are new scientific studies to report upon, as well as fresh epiphanies gleaned through daily living with Rheumatoid Disease. Communicating online with other patients with RD and other inflammatory autoimmune disorders and chronic illness yields new insights; frequently, these are actionable. Encouraging fellow patients to better advocate for themselves with loved ones and healthcare providers (HCPs) is a primary reason I participate in these conversations. </span><br />
<span style="font-size: large;"><span style="font-family: Arial;"></span><br /></span>
<span style="font-family: Arial; font-size: large;">There is also a major push in the healthcare world to make care more “patient-centered.” Dare I say it has become trendy! Yet it seems medicine, like other traditional, entrenched professions, is extremely slow to change. Every week there is news on the #epatient and #participatorymedicine front, which is central to our experiences as chronically ill people, but is more universal than that. Eventually every one of us humans will be a patient. </span><br />
<span style="font-size: large;"><span style="font-family: Arial;"></span><br /></span>
<span style="font-family: Arial; font-size: large;">So you can expect some personal thoughts from me, as well as curated content from the most relevant thought leaders in rheumatology, personalized medicine, participatory medicine, and the e-patient movement. I have met so many inspiring activists who I look forward to bringing to the attention of anyone following my journey.</span><br />
<span style="font-size: large;"><span style="font-family: Arial;"></span><br /></span>
<span style="font-family: Arial; font-size: large;">Carry on!</span><br />
<span style="font-family: Arial; font-size: large;">Shannon</span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="clear: left; float: left; font-size: large; margin-bottom: 1em; margin-right: 1em;"><a href="http://rheum4us.org/what-is-rheumatoid-awareness-day/" target="_blank"><img alt="Rheumatoid Awareness Day is Feb. 2! Click for info!" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQCS13h1yudIUGsLWVIjWbD1pwgEO_7qrVGptsOVZKTHlxlQN4lO2Z8whUcIvHeeOYpIdTsqYfY_DjUZeGoTkx9pWbdBLQWRMdRRdPDGeIZT0ODFkmNTTA31QVNHtiK_LmjjUmu_JkXg/s1600/Rheumatoid-Awareness-Day-Feb-2.png" height="79" title="" width="640" /></a></span></div>
<span style="font-size: large;"><span style="font-family: Arial;"></span><br /></span>
<span style="font-family: Arial; font-size: large;">P.S. - <a href="http://rheum4us.org/what-is-rheumatoid-awareness-day/" target="_blank">Rheumatoid Awareness Day</a> is Feb. 2! I’ll be participating in <a href="http://rawarrior.com/what-would-rheumatoid-awareness-mean-to-you/" target="_blank">RAWarrior’s Blog Carnival</a>, as well as changing my social media profiles to increase awareness of Rheumatoid Disease (aka Rheumatoid Arthritis). <a href="http://rheum4us.org/rheumatoid-arthritis-resources/rheumatoid-awareness-images/" target="_blank">Take a look here to find graphics</a> you can save and use in your social media profiles to spread awareness of this 2nd annual event! It’s easy to <a href="https://www.facebook.com/events/435138783279117/" target="_blank">spread awareness on Facebook by joining the online event</a> and sharing to your FB profile! Check out <a href="http://www.cafepress.com/rheum4us/10970718" target="_blank">RAD gear</a> so you can spread Rheumatoid awareness in real life (IRL)! Lastly, <a href="http://rheum4us.org/give-now-to-double-your-donation-double-your-impact/" target="_blank">make a donation to the RPF to be matched by Crescendo Bioscience</a>!</span>Shannon Ragland Lakehttp://www.blogger.com/profile/14307983427828671576noreply@blogger.com1tag:blogger.com,1999:blog-7593295036104491039.post-79452546459767860662013-06-18T15:10:00.001-07:002013-06-20T10:59:40.130-07:00Rheumatoid Arthritis Blogger Summit and Rethink RA<span style="font-size: large;">On May 31, 2013, I was pleased to attend the first <b>Rheumatoid Arthritis Blogger Summit</b>, sponsored by and courtesy of, <a href="http://www.pfizer.com/">Pfizer, Inc</a>. </span><br />
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<b><span style="font-size: large;">The Summit</span></b><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOn9S076w7M7aNM_0JOQRbClFTX_MhTBtaiZOkF76GGPEsrQVue3dJ-cA6Ni0xM_v4cMYHlUhA-tcX84QMJ9MD44yqTA2oSOmF4UN-i8mkJ8z3rplK0Fudsk1u6I1wB0p9E88VdR7ATQ/s1600/IMG_8571.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOn9S076w7M7aNM_0JOQRbClFTX_MhTBtaiZOkF76GGPEsrQVue3dJ-cA6Ni0xM_v4cMYHlUhA-tcX84QMJ9MD44yqTA2oSOmF4UN-i8mkJ8z3rplK0Fudsk1u6I1wB0p9E88VdR7ATQ/s320/IMG_8571.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>RethinKit</b> available at <a href="http://rethinkra.com/">http://rethinkra.com/</a>. </td></tr>
</tbody></table>
<span style="font-size: large;">The one-day event was filled with lively group discussions about a variety of topics of interest to us Rheumatoid patient bloggers, including how pharma can help to meet the information needs of the RA community, the role of pharma in social media (in a highly regulated industry), and what it is like to actually live (and blog) life with Rheumatoid Disease.</span><span style="font-size: large;"> </span><br />
<br />
<br />
<b><span style="font-size: large;">Rethink RA</span></b><br />
<span style="font-size: large;">We RA bloggers received exciting sneak peeks of a brand neutral program launching June 19 (that's tomorrow!), designed to educate our community in several aspects of managing our disease. </span><br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHlflrMyVZ_oJby0m7Hb_pcWjNvIgJ6W1yzqCCgsOzIEkx5YpAdJMaEBi52HpxJsPC_hnoVehQLPxr8VrKK63_-Ep54ywNRzD0h2bdj2AcWLK4gvQy0dbameMcDUs0BX6uAwSIAJSMSw/s1600/IMG_8494.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHlflrMyVZ_oJby0m7Hb_pcWjNvIgJ6W1yzqCCgsOzIEkx5YpAdJMaEBi52HpxJsPC_hnoVehQLPxr8VrKK63_-Ep54ywNRzD0h2bdj2AcWLK4gvQy0dbameMcDUs0BX6uAwSIAJSMSw/s320/IMG_8494.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Seamus Mullen at work in the kitchen. <br />
Look for his RethinkRA Events here: <br />
<a href="http://cooking.rethinkra.com/events">http://cooking.rethinkra.com/events</a></td></tr>
</tbody></table>
<span style="font-size: large;"><a href="http://www.rethinkra.com/cooking">This program</a> features the legendary <b>Seamus Mullen</b>, chef, author of <a href="http://www.amazon.com/Seamus-Mullens-Hero-Food-Delicious/dp/1449407587">Hero Food</a>, and owner of <a href="http://tertulianyc.com/">Tertulia</a>, a top restaurant in New York City, for education and inspiration. <a href="http://seamusmullen.com/">Seamus</a> has RA, and offered us many helpful tips for managing RA in the kitchen. </span><br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK2MfuAFhP5rNVhXVA4KRrvmSOyoPyPhXnlqyZmzUOnSbK_PQQwZKBtWRlMU_WGE5UiMsEPn98_vTB6_O6Qc2K6sU9Mr8lhqoA-DU5fVURNouagm3tb6_NgeF5wXDEuLg7fVi0uJU4YA/s1600/IMG_8565.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK2MfuAFhP5rNVhXVA4KRrvmSOyoPyPhXnlqyZmzUOnSbK_PQQwZKBtWRlMU_WGE5UiMsEPn98_vTB6_O6Qc2K6sU9Mr8lhqoA-DU5fVURNouagm3tb6_NgeF5wXDEuLg7fVi0uJU4YA/s320/IMG_8565.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">(L-R) Dana Symons (from <a href="http://waters-edge.blogspot.com/">http://waters-edge.blogspot.com/</a><br />
and @dsymons on Twitter), Seamus Mullen, and me.</td></tr>
</tbody></table>
<br />
<br />
<br />
<br />
<span style="font-size: large;">We were treated to an insightful healthy cooking demonstration for lunch and were bowled over! The delicious, anti-inflammatory, lunchtime demo that we got to enjoy eating was a super fun highlight of the summit. </span><br />
<br />
<br />
<br />
<br />
<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqZ0YgqoccZllXXqZoStBYoOJLLI5UgM4Wgu5V33-nBzeOsioCCwGYBtrQ1nTTWKMDbsrs4I0RPbJMhxVmI3ScEdMnPFu0Xx_ONf-2wtcyFppIATRgwv_6GxqMRfLd7ungWKBF3EsDZw/s1600/IMG_8687.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqZ0YgqoccZllXXqZoStBYoOJLLI5UgM4Wgu5V33-nBzeOsioCCwGYBtrQ1nTTWKMDbsrs4I0RPbJMhxVmI3ScEdMnPFu0Xx_ONf-2wtcyFppIATRgwv_6GxqMRfLd7ungWKBF3EsDZw/s320/IMG_8687.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Times Square with (L-R) <br />
Britt Johnson (<a href="http://www.thehurtblogger.com/">http://www.thehurtblogger.com/</a>) <br />
and Angela Lundberg (<a href="http://inflamed.wordpress.com/">http://inflamed.wordpress.com/</a>).</td></tr>
</tbody></table>
<b><span style="font-size: large;">The Conversation </span></b><br />
<br />
<span style="font-size: large;">One wonderful aspect of the trip to NYC was the opportunity to meet other RA advocates and bloggers with whom I had communicated via Twitter, Facebook, and social media, as well as several faces new to me.<span style="font-size: large;"> </span></span><br />
<br />
<span style="font-size: large;"><span style="font-size: large;">I look forward to continuing the conversation with both the advocates and pharma representatives I met at the RA Blogger Summit. The organizers at Pfizer were all very generous and eager to listen. They also took care of our travel, which would have been prohibitive for many of us to participate otherwise. Thanks to the wonderful team at Pfizer, Inc.!</span></span><br />
<br />
<span style="font-size: large;"><span style="font-size: large;">Opening the doors of communication between Rheumatoid patients and those who work to make our lives better seems, to me, a great goal. Special thanks also to Seamus Mullen for opening up and sharing his tips and stories about his life with RA!</span></span>Shannon Ragland Lakehttp://www.blogger.com/profile/14307983427828671576noreply@blogger.com4tag:blogger.com,1999:blog-7593295036104491039.post-55191769905882405492013-05-29T20:02:00.004-07:002015-07-21T10:59:02.126-07:00Rheumatoid Disease Awareness: My Onset Story, Part II<span style="font-size: large;">May is Arthritis Awareness Month. While I personally believe the term "Rheumatoid Arthritis" is imprecise and prefer “Rheumatoid Disease” to reflect its systemic nature, there is no doubt that arthritis is a prominent feature. </span><br />
<br />
<span style="font-size: large;">This month I stand with my friends who fight similar diseases that feature arthritis as a major symptom, such as Lupus, Ankylosing Spondylitis (AS), Psoriatic Arthritis (PsA), and Juvenile Idiopathic Arthritis (JIA), among others.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Where I left off my onset story, I was ten years old. Seronegative and with no known family history, I remained undiagnosed. After a drained knee, steroid injections, and immobilization, I returned to ballet, tap, and tennis.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Fast forward to Eighth Grade. I transferred to a new school, with all its challenges. We had an ice storm in Atlanta during Christmas break. Here, ice shuts down the metropolitan area, so I went sledding with friends.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Halfway down the hill on my sled there was an oncoming car. To avoid speeding out in front of the car I veered, hitting a mailbox. I prevented collision with the car. On that note we called it a day, going inside for dry clothes and hot chocolate.</span><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiu-tbWKB12ktuq8EO4Xsc02FEXoFhPj7v5a7J778yhKJG_JJKY3YIJZ2NpyHlrPfCB4YDosTILdTNWK3UpYi2KHCCHNlIkxlQhVzlDDNd75Em9cbUsJ_AipmY0PJp8pUvUlfcWfZx_Q/s1600/ameliaisland_wKate1_550c.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiu-tbWKB12ktuq8EO4Xsc02FEXoFhPj7v5a7J778yhKJG_JJKY3YIJZ2NpyHlrPfCB4YDosTILdTNWK3UpYi2KHCCHNlIkxlQhVzlDDNd75Em9cbUsJ_AipmY0PJp8pUvUlfcWfZx_Q/s320/ameliaisland_wKate1_550c.jpg" width="308" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Amelia Island with my best friend Katie. Age 15. <br />
Swollen right knee hidden strategically. </td></tr>
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<span style="font-size: large;"></span><br />
<span style="font-size: large;"></span>
<span style="font-size: large;">While we defrosted at my best friend, Katie's, house, my knee felt odd. I propped it up; it was swollen to grapefruit size and hurt a lot. I knew it was bad news. </span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">The next day I saw mom's orthopedic doctor again. He referred me to a pediatric orthopedic surgeon, who concurred that I had likely torn my <b>anterior cruciate ligament (ACL)</b>. I had <b>arthroscopic surgery</b> the following day to investigate and fix the damage done. The surgeon was prepared to repair the ligament with a bovine one if torn. What he found when he went into my knee was a surprise.</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">He found a stretched ligament, with damage to cartilage and synovial tissue that had all the hallmarks of Juvenile Rheumatoid Arthritis (JRA), which required a <b>synovectomy</b>. This diagnosis was confirmed when I used crutches during recovery and my other knee "blew up.” I was immediately referred to a pediatric rheumatologist. </span><br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8lay8v0H2mt2jIPv45TtED8B5TCgD61d1xXhI3qA_WkCSTVOPDEvWXFh0egG6hcJ1wWF-XLwwaC-BX9GLhK5IZ3NWM8cMAPqAgXD0_PZz6LLHMM96Gl2KmNVT3k9x05EBdvPRef1iQA/s1600/highschool_blonde_wKSR_550c.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8lay8v0H2mt2jIPv45TtED8B5TCgD61d1xXhI3qA_WkCSTVOPDEvWXFh0egG6hcJ1wWF-XLwwaC-BX9GLhK5IZ3NWM8cMAPqAgXD0_PZz6LLHMM96Gl2KmNVT3k9x05EBdvPRef1iQA/s320/highschool_blonde_wKSR_550c.jpg" width="312" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fresh off of crutches (and braces!). <br />
Age 14, with my 9-year-old sister.</td></tr>
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<span style="font-size: large;">My bilateral arthritis symptoms led to a diagnosis of <b>pauciarticular Juvenile Rheumatoid Arthritis (JRA)</b>. This is <b>Rheumatoid Disease that affects three or fewer joints in a child</b>. My parents and I were told I would likely outgrow it, or that it would "burn out" by the end of adolescence. Treatment began with eight Bayer aspirin per day during my six-month long recovery from surgery. I was sidelined indefinitely from dance, tennis, and P.E. to preserve my stretched ligament and prevent further damage. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnul8u8nIZPqqj43BsrqIgNJQ_MuyDDDXwAKi_RQSbOQFAyQGCgl9rLKIfQX-931gMHZ7gHIBirH7InxVOODo4_5PmyOosCXV-uEFY1ZCqGYAThDsgiOdhcpgDiAAS3Qmu-nbxfKepvA/s1600/prom_wBrad2_550c.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnul8u8nIZPqqj43BsrqIgNJQ_MuyDDDXwAKi_RQSbOQFAyQGCgl9rLKIfQX-931gMHZ7gHIBirH7InxVOODo4_5PmyOosCXV-uEFY1ZCqGYAThDsgiOdhcpgDiAAS3Qmu-nbxfKepvA/s320/prom_wBrad2_550c.jpg" width="315" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Junior Prom, Age 16.</td></tr>
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<span style="font-size: large;"></span><br />
<span style="font-size: large;"></span>
<span style="font-size: large;">We believed my physicians when they said that I should outgrow my disease. I made plans for my future, working around my limitations. I focused on studio art and science, volunteering at my pediatric sports medicine PT. My astronaut/scientist dreams evolved into doctor/artist ones.</span><br />
<br />
<span style="font-size: large;">We all were caught off guard when Rheumatoid Disease would prove to derail my life repeatedly, leading me down many unexpected paths and teaching me fresh lessons. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><a href="http://rheumatoidpatient.blogspot.com/2013/02/rheumatoid-awareness-day-my-onset-story.html">My Onset Story, Part I</a></span>Shannon Ragland Lakehttp://www.blogger.com/profile/14307983427828671576noreply@blogger.com0tag:blogger.com,1999:blog-7593295036104491039.post-12089905894332990572013-02-02T13:34:00.000-08:002013-07-31T18:23:42.383-07:00Rheumatoid Awareness Day: My Onset Story, Part I<style>
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</style> <span style="font-size: large;">What an exciting day! The <a href="http://rheum4us.org/rheumatoid-arthritis-awareness-day/">1st Rheumatoid Awareness Day</a> organized by the <a href="http://rheum4us.org/">Rheumatoid Patient Foundation</a> is today, 2/2/2013! Just as Punxsutawney Phil came out of his burrow this morning to mark Groundhog Day, today is a “coming out day” for me as a long-time Rheumatoid Disease Patient.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I have shared pieces of my onset story with members of the #rheum community on Twitter over the past couple of years, but have never published it. Today I add my voice to many others for the sake of Rheumatoid Disease awareness.<span style="font-size: large;"> You may recognize these patterns.</span></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2dbZlPxXBb5cSW9tlU7B-5uLlgOjl-ZPTdVRdM2UVKdL8acmscsKU7jom3TpFoTSKN1R1_txzMns_klrwR47noFF_55QZoEEtJQa2hccdTv3nRsQm9nwHv84WjqTGaIUmqyPZZLYEbw/s1600/GanglionCyst1.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2dbZlPxXBb5cSW9tlU7B-5uLlgOjl-ZPTdVRdM2UVKdL8acmscsKU7jom3TpFoTSKN1R1_txzMns_klrwR47noFF_55QZoEEtJQa2hccdTv3nRsQm9nwHv84WjqTGaIUmqyPZZLYEbw/s1600/GanglionCyst1.jpg" width="264" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One ganglion cyst is visible here on my left hand.</td><td class="tr-caption" style="text-align: center;"></td></tr>
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<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Around age four, <i><b>I developed ganglion cysts on <span style="font-size: large;">the tops of my hands</span></b></i>. I remember finding them gross and uncomfortable. I was terrified the doctor would drain them, or use the old-fashioned remedy of striking them with a tome to “pop” them. Luckily, after a couple of years, they went away.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOhdGF7yvzUesymcvhJxaBNVortZz_bpULczDousSxPO2jGAhZxTMXnYmFF82ckUUu7wWbR0gccE4XewJAcw03tGuUpncA4yH-Uu_ZPnMY9_rQHZ2uapoxMzLWP44sik2hzMfWWyCqiQ/s1600/HappyChildhood.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOhdGF7yvzUesymcvhJxaBNVortZz_bpULczDousSxPO2jGAhZxTMXnYmFF82ckUUu7wWbR0gccE4XewJAcw03tGuUpncA4yH-Uu_ZPnMY9_rQHZ2uapoxMzLWP44sik2hzMfWWyCqiQ/s1600/HappyChildhood.jpg" width="268" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy with my dad and siblings. 70's awesomeness.</td></tr>
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<br />
<span style="font-size: large;">According to my mother, during my childhood, <i><b>I frequently complained of pain in my legs</b></i>. I was small for my age, diagnosed with a one-and-a-half-year growth delay. Curiously, <i><b>my pain<span style="font-size: large;"> was</span> explained away as "growing pains" by my pediatrician</b></i>. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><i><b>A sufferer of frequent respiratory infections, I missed many days of elementary school. I remember daily exhaustion</b></i>, barely able to stay awake in school from about 2nd grade on.
I despised P.E., which usually involved team sports with my peers, who were all larger, more developed, and <span style="font-size: large;">more </span>athletic. <i><b>I was always the last to be chosen for the team</b></i>.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">My extracurricular activities away from school were much better, but very tiring. I loved ballet and tap dance, tennis, piano - anything where I was allowed to progress at my own pace.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">When I was 10 I went with my family on a two-week trip. I was paired with my grandmother, and we walked and walked, eager to see and experience everything. We visited several major museums, a favorite pastime. During one daylong visit <i><b>my knees both ballooned; they were unrecognizably boggy and painful</b></i>.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">When we returned home, my mother took me to her adult orthopedic specialist. He drained my right knee, immobilized it for several weeks, and ran blood tests, looking for autoimmune arthritis. Everything came out negative. My mother was asked about family history, and she gave him no indication of any, because she did not know of any. I was sent back to my activities after the swelling receded.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">We thought this episode was over<span style="font-size: large;"> and life would go back to normal</span>. We were wrong.
</span>
<br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><a href="http://rheumatoidpatient.blogspot.com/2013/05/rheumatoid-disease-awareness-my-onset.html">My Onset Story, Part II </a></span>Shannon Ragland Lakehttp://www.blogger.com/profile/14307983427828671576noreply@blogger.com3tag:blogger.com,1999:blog-7593295036104491039.post-35265783793404671392012-11-22T20:55:00.003-08:002019-03-19T13:37:43.775-07:00November - A Month to Be Thankful<br />
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</style><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU_f0GzZEa3n-J6feZzDeeJc-XK5NHkrgG4SUt6y3h6oG4w0MKLjkDC9hZ9da6d6JQeOdEWixacknLzYChzG_x1UMUvfPp6_ESUSi8Yw-QPRqX4JJwDOcAuHajftegFhZoStS77GW99w/s1600/IMG_9477.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU_f0GzZEa3n-J6feZzDeeJc-XK5NHkrgG4SUt6y3h6oG4w0MKLjkDC9hZ9da6d6JQeOdEWixacknLzYChzG_x1UMUvfPp6_ESUSi8Yw-QPRqX4JJwDOcAuHajftegFhZoStS77GW99w/s320/IMG_9477.JPG" width="240" /></a><span style="font-family: "helvetica"; font-size: large;">Over the past three
weeks I have seen daily posts on social media from family and friends
enumerating blessings for which they are thankful during this month of
Thanksgiving. These posts in my feed have inspired me to ponder the things in
my life for which I am most thankful, as well.<br />
<br />
As in previous years, I am thankful for my family and friends. For a roof over
my head and food on the table. For my sweetheart and for my gentle little dogs
who keep me company. That I am still here in my 38th year. But this year I can
share that <b><i>I am thankful that so much work is being done by good people to find
new treatments and a cure for Rheumatoid Disease, a.k.a. Rheumatoid Arthritis</i></b>.<br />
<br />I know this because I was a volunteer at the annual scientific meeting of the
American College of Rheumatology (ACR) in Washington, D.C. last week with the
Rheumatoid Patient Foundation. This was my second year helping with the RPF's
booth in the exhibit hall, but was able to explore more of the conference this
year. To be able to read endless posters and meet scientists representing
research in Rheumatology and Immunology from around the world was my pleasure
and privilege. We also met many clinicians and individuals from the
pharmaceutical industry and other patient advocacy organizations who stopped by
our booth to find out what the RPF is all about.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN1L-7B85pWRbp7YLFq1tj03zGc1yPehlykz93OcYxZTxsnh0RRObnydd-2kk2tcsuV-v12j3gY9uk3ix1S1k8OcEfpd2rq3UsbUukBFwOBbiMUsdnbH95wHTVQ8STFFM1LCD-dIxmkg/s1600/fullsizeoutput_787f.jpeg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="1279" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN1L-7B85pWRbp7YLFq1tj03zGc1yPehlykz93OcYxZTxsnh0RRObnydd-2kk2tcsuV-v12j3gY9uk3ix1S1k8OcEfpd2rq3UsbUukBFwOBbiMUsdnbH95wHTVQ8STFFM1LCD-dIxmkg/s320/fullsizeoutput_787f.jpeg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">#Rheum Tweetup w/Rheumatology stakeholders, <br />including patients and clinicians from around the world!</td></tr>
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<span style="font-family: "helvetica"; font-size: large;">We, the <a href="http://rheum4us.org/">Rheumatoid Patient Foundation</a>, are proud to be an organization
conceived and created by patients, for patients. We want to open the door for
better communication between patients and clinicians, and between patients and
researchers. We patients yearn to be part of the solution! We ask to help those
dedicated to helping us.<br />
<br />
Improving lives by educating and supporting patients, and improving care for
all Rheumatoid Disease patients by endorsing a patient-centered approach, is
what the RPF is about. This Thanksgiving I am thankful for Kelly Young, Katie
Beth Young, the Board of Directors, our Advisory Board, and volunteers for
working to give Rheumatoid Disease patients a voice.</span><br />
<br />Shannon Ragland Lakehttp://www.blogger.com/profile/14307983427828671576noreply@blogger.com0