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		<title>Walking On Screen</title>
		<link>http://novelpatient.com/2010/03/10/walking-on-screen/</link>
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		<pubDate>Thu, 11 Mar 2010 05:52:46 +0000</pubDate>
		<dc:creator>Novel Patient</dc:creator>
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		<description><![CDATA[After a year of being in a wheelchair, I am walking again in this video.]]></description>
			<content:encoded><![CDATA[<p>Check out this <a rel="shadowbox" href="http://www.youtube.com/v/tSI6H_Ck3W8">video of me WALKING</a>!  It has truly been a miraculous recovery process!</p>
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<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5226" rel="bookmark" title="March 11, 2010 at 6:53 am"><span class="rc-commenter">Dad</span> commented on <span class="rc-title">Walk By Faith</span></a> Beautiful day to share with you&#8230; Love, Dad P.S. I really do have more hair than the picture shows!</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5224" rel="bookmark" title="March 11, 2010 at 5:11 am"><span class="rc-commenter">alan m rogers</span> commented on <span class="rc-title">Walk By Faith</span></a> Fantastic and amazing. I was baptized (in a hot tub, no less!) just over two years ago. I have fibro</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5221" rel="bookmark" title="March 11, 2010 at 4:51 am"><span class="rc-commenter">Jen Fryer</span> commented on <span class="rc-title">Walk By Faith</span></a> What wonderful news. I cannot tell you how happy I am for you.</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5217" rel="bookmark" title="March 10, 2010 at 9:42 pm"><span class="rc-commenter">Alison</span> commented on <span class="rc-title">Walk By Faith</span></a> I know it can be hard to talk about your faith in this kind of forum, but I&#8217;m glad you did! The best</li>
<li><a href="http://novelpatient.com/2010/02/20/walking-the-power-of-positivity-and-prayer/#comment-5204" rel="bookmark" title="March 10, 2010 at 3:00 am"><span class="rc-commenter">Annette</span> commented on <span class="rc-title">Walking: The Power of Positivity and Prayer</span></a> I heard about the insanely slow taper from someone else, and she had the most success of anyone in a</li>
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		<title>Walk By Faith</title>
		<link>http://novelpatient.com/2010/03/09/walk-by-faith/</link>
		<comments>http://novelpatient.com/2010/03/09/walk-by-faith/#comments</comments>
		<pubDate>Wed, 10 Mar 2010 07:04:04 +0000</pubDate>
		<dc:creator>Novel Patient</dc:creator>
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		<guid isPermaLink="false">http://novelpatient.com/?p=559</guid>
		<description><![CDATA[Sunday was a small miracle in the grand scheme of things but not so small to me and a miracle none the less. It was a day that I thought would never happen on many levels. One thing that I thought would never happen was get Baptized, but Sunday was my Baptism. Another thing I thought would never happen was walk at my Baptism, and yet I have gone from not walking from for over a year to no longer using my wheelchair at all in the last three weeks.]]></description>
			<content:encoded><![CDATA[<p><a title="Walk by Faith and Not by Sight by Heart Windows Art, on Flickr" href="http://www.flickr.com/photos/heart_windows_art/2330771133/"><img src="http://novelpatient.com/wp-content/uploads/2010/03/2330771133_84e0a2570e.jpg" alt="Walk by Faith and Not by Sight" width="434" height="325" /></a></p>
<p><span style="color: #800080;">Arise, walk through the land in the length of it and in the  breadth of it; for I will give it unto thee. <strong><a href="http://www.biblegateway.com/passage/?search=Genesis+13:17&amp;version=KJV"><br />
<span style="color: #008080;">Genesis   13:17</span></a></strong></span></p>
<p><span style="color: #008080;"><span style="color: #800080;">He answered  them, He that made me whole, the same said unto me, Take up  thy bed, and  walk.<br />
Then  asked they him, What man is that which  said unto thee, Take up thy bed,  and walk?<br />
And he  that was healed  wist not who it was: for Jesus had conveyed himself  away, a multitude  being in that place.</span><br />
<span style="color: #008080;"><strong>John 5:11-13 (King James Version)</strong></span></span></p>
<p>Sunday was a small miracle in the grand scheme of things but not so small to me and a miracle none the less.  It was a day that I thought would never happen on many levels.  One thing that I thought would never happen was get Baptized, but Sunday was my Baptism.  Another thing I thought would never happen was walk at my Baptism, and yet I have gone from not walking from for over a year to no longer using my wheelchair at all in the last three weeks.</p>
<p>I&#8217;ve been hesitant to talk about my faith here as its a touchy and divisive subject for some, but I figure this is my blog and my faith has become a major part of my life.  I share every other aspect of my life here.  I would be remiss if I left something so close to my heart out.</p>
<p>But my faith wasn&#8217;t always so important to me.  I was raised Reform Jewish, and though I was Bat Mitzvahed, Confirmed, and even assistant taught Religious School at my Temple, I never felt connected spiritually to that faith.  So in my more recent adult years I&#8217;ve been searching for a faith that helped me feel close to God.  For a while For a while I was going to the Universalist Unitarian Church in my area, and though I liked the people and the services very much I still didn&#8217;t feel that closeness to God that I so desperately needed.</p>
<p>So when Melissa invited me to join her for services at her at our local Church of Jesus Christ of Latter Day Saints, I thought it was a long shot but worth at least checking out.   I had already learned a lot about being <a class="zem_slink freebase/en/church_of_jesus_christ_of_latter-day_saints" title="The Church of Jesus Christ of Latter-day Saints" rel="homepage" href="http://www.lds.org">Mormon</a> from her during the time she&#8217;s worked for me, and she had suggested I could get a blessing for my health when I went to church with her.</p>
<p>I was totally unprepared for what I experienced; I felt God for the first time in a very tangible way.  I knew right in that moment that my search had come to an end.  That I had found what I had been searching for.  I decided to start investigating the church and taking my Missionary Discussions that I would need in order to covert.  My blessing also said that through faith I could be healed.  It has been amazing how true that has been.</p>
<p>Over the following week I started feeling better than I had in a long time.  I decided to capitalize on the opportunity and try walking again for the first time in over a year.  I started with just a few steps.  I expected for the recovery process to be slow going.  I expected that it would take months to build up enough strength to walk more than a few steps at a time after over a year of being in a wheelchair or bed full time.  But I have been praying every night and the improvements to my walking have been exponential!  And in just three short weeks, I went from my first steps to ditching my wheelchair completely!</p>
<p>So Sunday I was Baptized, and I walked the whole day &#8211; including down the steps into the Baptismal Font and up again.  My Dad and his girlfriend Wendy were there which made my very happy.  My Mom chose not to attend which was the only sad thing.  It was one of the very best days of my life! And with it I have found such peace and happiness the likes of which I  had never known.  Words cannot describe how grateful I am.  It has been  such a relief and such a comfort.  I truly believe that through faith in Christ I have begun the healing  process!  And I am so thankful to Him for this and for the closeness I  now feel to God.  Through Him I have found what I was looking for and more than I could have ever imagined.
<a href='http://novelpatient.com/wp-content/uploads/2010/03/IMG_1081.jpg' rel='shadowbox[post-559];player=img;' title='With the Missionaries'><img width="150" height="150" src="http://novelpatient.com/wp-content/uploads/2010/03/IMG_1081-150x150.jpg" class="attachment-thumbnail" alt="With the Missionaries who Baptized me" title="With the Missionaries" /></a>
<a href='http://novelpatient.com/wp-content/uploads/2010/03/IMG_1082.jpg' rel='shadowbox[post-559];player=img;' title='My Friends'><img width="150" height="150" src="http://novelpatient.com/wp-content/uploads/2010/03/IMG_1082-150x150.jpg" class="attachment-thumbnail" alt="My friends after the Baptism" title="My Friends" /></a>
<a href='http://novelpatient.com/wp-content/uploads/2010/03/IMG_1083.jpg' rel='shadowbox[post-559];player=img;' title='Melissa and Me'><img width="150" height="150" src="http://novelpatient.com/wp-content/uploads/2010/03/IMG_1083-150x150.jpg" class="attachment-thumbnail" alt="Melissa and me after the Baptism" title="Melissa and Me" /></a>
<a href='http://novelpatient.com/wp-content/uploads/2010/03/IMG_1084.jpg' rel='shadowbox[post-559];player=img;' title='With Dad and Wendy'><img width="150" height="150" src="http://novelpatient.com/wp-content/uploads/2010/03/IMG_1084-150x150.jpg" class="attachment-thumbnail" alt="With Dad and Wendy after the Baptism" title="With Dad and Wendy" /></a>
</p>
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<p><strong>Recent Comments:</strong>
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<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5226" rel="bookmark" title="March 11, 2010 at 6:53 am"><span class="rc-commenter">Dad</span> commented on <span class="rc-title">Walk By Faith</span></a> Beautiful day to share with you&#8230; Love, Dad P.S. I really do have more hair than the picture shows!</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5224" rel="bookmark" title="March 11, 2010 at 5:11 am"><span class="rc-commenter">alan m rogers</span> commented on <span class="rc-title">Walk By Faith</span></a> Fantastic and amazing. I was baptized (in a hot tub, no less!) just over two years ago. I have fibro</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5221" rel="bookmark" title="March 11, 2010 at 4:51 am"><span class="rc-commenter">Jen Fryer</span> commented on <span class="rc-title">Walk By Faith</span></a> What wonderful news. I cannot tell you how happy I am for you.</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5217" rel="bookmark" title="March 10, 2010 at 9:42 pm"><span class="rc-commenter">Alison</span> commented on <span class="rc-title">Walk By Faith</span></a> I know it can be hard to talk about your faith in this kind of forum, but I&#8217;m glad you did! The best</li>
<li><a href="http://novelpatient.com/2010/02/20/walking-the-power-of-positivity-and-prayer/#comment-5204" rel="bookmark" title="March 10, 2010 at 3:00 am"><span class="rc-commenter">Annette</span> commented on <span class="rc-title">Walking: The Power of Positivity and Prayer</span></a> I heard about the insanely slow taper from someone else, and she had the most success of anyone in a</li>
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		<title>Walking: The Power of Positivity and Prayer</title>
		<link>http://novelpatient.com/2010/02/20/walking-the-power-of-positivity-and-prayer/</link>
		<comments>http://novelpatient.com/2010/02/20/walking-the-power-of-positivity-and-prayer/#comments</comments>
		<pubDate>Sat, 20 Feb 2010 10:09:33 +0000</pubDate>
		<dc:creator>Novel Patient</dc:creator>
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		<description><![CDATA[Today I walked ten whole feet!!!  It was only my second time walking in over a year!
It is something that for a long time I was afraid to even pray for.  But with a lot of prayer recently, I&#8217;ve come to realize that with a lot of faith in both myself and in God, anything [...]]]></description>
			<content:encoded><![CDATA[<p style="text-align: left;">Today I walked ten whole feet!!!  It was only my second time walking in over a year!<a href="http://novelpatient.com/wp-content/uploads/2010/03/IMG_1050.jpg" rel="shadowbox[post-551];player=img;"><img class="aligncenter size-full wp-image-552" title="IMG_1050" src="http://novelpatient.com/wp-content/uploads/2010/03/IMG_1050.jpg" alt="" width="425" height="567" align="center" /></a></p>
<p style="text-align: left;">It is something that for a long time I was afraid to even pray for.  But with a lot of prayer recently, I&#8217;ve come to realize that with a lot of faith in both myself and in God, anything is possible.</p>
<p><a title="Roll, Handicapped Person, Roll! by Giant Ginkgo, on Flickr" href="http://www.flickr.com/photos/giantginkgo/58977771/"><img src="http://novelpatient.com/wp-content/uploads/2010/03/58977771_2141d08773.jpg" alt="Roll, Handicapped Person, Roll!" width="192" height="192" align="left" /></a></p>
<p style="text-align: left;">It&#8217;s also taken willingness to put up with significant pain.  But reflecting back on how much pain I was in while attempting to even stand a year ago (which is why I was in the wheelchair to begin with &#8211; very severe joint pain), the joint pain is significantly less than it once was.  I&#8217;m not sure what the final factor in the lessening of my joint pain is.  Maybe the Rituxan finally kicked in after all these months.  I just don&#8217;t know.  But I am so thankful that I have the opportunity to try to get up and out of my wheelchair again!  I decided to think that it wouldn&#8217;t hurt as badly as it once did, and so far it hasn&#8217;t!</p>
<p style="text-align: left;">My goal is to walk three days a week &#8211; Monday, Wednesday, Friday &#8211; leaving at least a day inbetween to rest, so I don&#8217;t completely over do it.</p>
<p style="text-align: left;"><a title="Praying Hands by Lucid Nightmare, on Flickr" href="http://www.flickr.com/photos/lucid_nightmare/108164199/"><img src="http://novelpatient.com/wp-content/uploads/2010/03/108164199_5472fc847c.jpg" alt="Praying Hands" width="260" height="250" align="right" /></a>In the meantime, I&#8217;m trying to taper my Prednisone dose very very gradually.  In the recent past, every time I would try to taper the dose my neurological symptoms would flare &#8211; face drooping, increased tremors, numbness, and so on.  And I&#8217;ve been afraid that this would happen this time.  But so far it hasn&#8217;t.  And there are only three differences this time to which I can attribute my success so far.  Tapering insanely slowly, prayer, and the decision to think positivity.  Some combination of the three would be my best guess at the reason.</p>
<p style="text-align: left;">Though for years now I&#8217;ve considered myself a very positive person, it never ceases to amaze me what the power of positive thinking can do.  And now I&#8217;ve added prayer and a faith in God into the mix.  I feel a sense of inner peace I have never known.  And perhaps that is the most healing thing of all.</p>
<p style="text-align: left;">I have a long road ahead of me.  But I plan to take it one step at a time, one day at a time.  That is how I take all of life.  One step at a time.  One day at at time.  With a positive thought in my head and a prayer in my heart.</p>
<p><strong>Recent Comments:</strong>
<ul class="recent-comments">
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5226" rel="bookmark" title="March 11, 2010 at 6:53 am"><span class="rc-commenter">Dad</span> commented on <span class="rc-title">Walk By Faith</span></a> Beautiful day to share with you&#8230; Love, Dad P.S. I really do have more hair than the picture shows!</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5224" rel="bookmark" title="March 11, 2010 at 5:11 am"><span class="rc-commenter">alan m rogers</span> commented on <span class="rc-title">Walk By Faith</span></a> Fantastic and amazing. I was baptized (in a hot tub, no less!) just over two years ago. I have fibro</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5221" rel="bookmark" title="March 11, 2010 at 4:51 am"><span class="rc-commenter">Jen Fryer</span> commented on <span class="rc-title">Walk By Faith</span></a> What wonderful news. I cannot tell you how happy I am for you.</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5217" rel="bookmark" title="March 10, 2010 at 9:42 pm"><span class="rc-commenter">Alison</span> commented on <span class="rc-title">Walk By Faith</span></a> I know it can be hard to talk about your faith in this kind of forum, but I&#8217;m glad you did! The best</li>
<li><a href="http://novelpatient.com/2010/02/20/walking-the-power-of-positivity-and-prayer/#comment-5204" rel="bookmark" title="March 10, 2010 at 3:00 am"><span class="rc-commenter">Annette</span> commented on <span class="rc-title">Walking: The Power of Positivity and Prayer</span></a> I heard about the insanely slow taper from someone else, and she had the most success of anyone in a</li>
</ul>
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		<title>Dependency</title>
		<link>http://novelpatient.com/2010/02/16/dependency/</link>
		<comments>http://novelpatient.com/2010/02/16/dependency/#comments</comments>
		<pubDate>Wed, 17 Feb 2010 05:21:10 +0000</pubDate>
		<dc:creator>Novel Patient</dc:creator>
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		<description><![CDATA[Having a chronic illness can rob you of your independence.  Suddenly you find yourself dependent on other people to do basic things you had always taken for granted, and this changes your relationships forever.]]></description>
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<dt class="wp-caption-dt"><a href="http://www.flickr.com/photos/53611153@N00/2886153523"><img title="Helping and" src="http://novelpatient.com/wp-content/uploads/2010/02/2886153523_c0cf3d4255_m.jpg" alt="Helping and" width="220" height="312" align="left" /></a></dt>
<dd class="wp-caption-dd zemanta-img-attribution" style="font-size: 0.8em;">Image by Darwin Bell via Flickr</dd>
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<p>Having a chronic illness can rob you of your independence.  Suddenly you find yourself dependent on other people to do basic things you had always taken for granted, and this changes your relationships forever.</p>
<p>Before I got sick I was a super independent person.  I always preferred to do things on my own and avoided asking for help even when I really needed it.  With the onset of my autoimmune diseases, especially the neurological symptoms and symptoms that limited my mobility, asking for help became an unavoidable way of life.</p>
<p>Now I need help with even basic things like getting dressed or washing my hair &#8211; things I have done on my own for most of my life.  Those were the hardest things to ask for and accept help with at first.  It was frustrating for me and it was frustrating for my mom who initially found herself as my only caregiver.  Suddenly she was caring for me in a way she hadn&#8217;t needed to since I was a small child.  It tested our relationship.</p>
<p>At the time I felt very hurt at her frustration.  I wondered why she didn&#8217;t just automatically understand how much I had to humble myself to even ask for help in the first place.  It hurt when she responded with questions about whether I really needed the help or if I was feeling as badly as I was saying.  We fought a lot at a time when I really just needed her support.  Eventually I came to understand that I was failing to communicate.  I was also blinded by my own experience.  I was so caught up in dealing with the implications of a chronic illness and how it had shaken my world that I failed to see how profoundly it was affecting her as well.</p>
<p><a href="http://novelpatient.com/wp-content/uploads/2010/02/9917_751014408975_3404365_44484772_218060_n.jpg" rel="shadowbox[post-534];player=img;"><img class="alignright size-full wp-image-537" title="Mom and Me" src="http://novelpatient.com/wp-content/uploads/2010/02/9917_751014408975_3404365_44484772_218060_n.jpg" alt="" width="218" height="144" align="right" /></a>But when I started to communicate this to her &#8211; that I knew how hard this was for her too  and that I appreciated all she was giving up to take care of me and that I knew it was also hard to watch her daughter get sick &#8211; the fighting tapered off.  I also found new ways to help her in return  that I could still do &#8211; mostly various types of computer and technical help.</p>
<p><a href="http://novelpatient.com/wp-content/uploads/2010/02/06-03-09_1527.jpg" rel="shadowbox[post-534];player=img;"><img class="size-full wp-image-539 alignleft" title="Sarina and Me" src="http://novelpatient.com/wp-content/uploads/2010/02/06-03-09_1527.jpg" alt="" width="193" height="285" align="left" /></a>When my mom simply couldn&#8217;t do it alone anymore, my need for help blessed me with two beautiful friendships in the form of two wonderful caregivers.  Sarina, my first caregiver, is more than a friend to me.  Born exactly one year apart, we say we are twins separated by a year at birth.  But it was odd at first having someone &#8211; a stranger &#8211; my age helping me with the very personal things I needed help with especially since I had been abandoned by several of my closest friends over the prior year.  They simply didn&#8217;t want deal with my new found illness and subsequent dependency.  Some stopped being my friend because they didn&#8217;t even believe I was actually sick and some of them just found it too much to handle and some I will never know their reasons.  In any case it hurt.  A lot.  But Sarina came in and loved me and accepted me and my illness.  She was truly a blessing and still is.</p>
<p><a href="http://novelpatient.com/wp-content/uploads/2010/02/IMG_0886.jpg" rel="shadowbox[post-534];player=img;"><img class="alignright size-full wp-image-538" title="IMG_0886" src="http://novelpatient.com/wp-content/uploads/2010/02/IMG_0886.jpg" alt="" width="202" height="134" align="right" /></a>After Sarina moved away to further her career and get married, Melissa, my current caregiver, came into my life.  She is an angel in my life.  She, like Sarina, is always there for me.  We laugh a lot.  And through both of them I found that though I was sick I could still be a good friend in return.  I could still listen and be there for people.  I didn&#8217;t just need help from them, I could give it in return.</p>
<p>But at the end of the day I am still dependent on other people.  And I still hate that.  I don&#8217;t think I&#8217;ll ever not hate watching my mom or Melissa assemble my back backbreakingly heavy wheelchair.  I hate that I can&#8217;t just do it myself.  Though in a lot of ways, my relationships have grown and been strengthened by my need for help, and for that I am grateful, I am still eager to find ways to lessen my dependency.</p>
<p><strong>So I am VERY pleased to announce that I&#8217;ve taken a step in the right direction &#8211; nine of them.  Last week  I walked (with the help of my walker) nine steps.  It was the first time I&#8217;ve walked in over a year!  I was having a low pain day and just went for it.  It was incredibly painful but even more incredibly worth it!</strong></p>
<p><em>This post is my entry in February&#8217;s Health Activist Blog Carnival. If you&#8217;re interested in participating too, you can read all about it <a href="http://blog.wegohealth.com/2010/02/introducing-health-activist-blog.html">HERE</a>.</em></p>
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<p><strong>Recent Comments:</strong>
<ul class="recent-comments">
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5226" rel="bookmark" title="March 11, 2010 at 6:53 am"><span class="rc-commenter">Dad</span> commented on <span class="rc-title">Walk By Faith</span></a> Beautiful day to share with you&#8230; Love, Dad P.S. I really do have more hair than the picture shows!</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5224" rel="bookmark" title="March 11, 2010 at 5:11 am"><span class="rc-commenter">alan m rogers</span> commented on <span class="rc-title">Walk By Faith</span></a> Fantastic and amazing. I was baptized (in a hot tub, no less!) just over two years ago. I have fibro</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5221" rel="bookmark" title="March 11, 2010 at 4:51 am"><span class="rc-commenter">Jen Fryer</span> commented on <span class="rc-title">Walk By Faith</span></a> What wonderful news. I cannot tell you how happy I am for you.</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5217" rel="bookmark" title="March 10, 2010 at 9:42 pm"><span class="rc-commenter">Alison</span> commented on <span class="rc-title">Walk By Faith</span></a> I know it can be hard to talk about your faith in this kind of forum, but I&#8217;m glad you did! The best</li>
<li><a href="http://novelpatient.com/2010/02/20/walking-the-power-of-positivity-and-prayer/#comment-5204" rel="bookmark" title="March 10, 2010 at 3:00 am"><span class="rc-commenter">Annette</span> commented on <span class="rc-title">Walking: The Power of Positivity and Prayer</span></a> I heard about the insanely slow taper from someone else, and she had the most success of anyone in a</li>
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		<title>Keeping The Faith</title>
		<link>http://novelpatient.com/2010/02/09/keeping-the-faith/</link>
		<comments>http://novelpatient.com/2010/02/09/keeping-the-faith/#comments</comments>
		<pubDate>Tue, 09 Feb 2010 23:53:29 +0000</pubDate>
		<dc:creator>Novel Patient</dc:creator>
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		<description><![CDATA[Through my chronic illness, I have come to realize how crucial it is to have faith.  When most people think of the word "faith" they think religion, but there are so many other aspects to keeping faith alive in your life through dark and difficult times.  In fact, the word "faith" is merely defined as "confidence or trust in a person or thing."]]></description>
			<content:encoded><![CDATA[<p><a title="Faith (Inspirational Word) by donnabellasangels, on Flickr" href="http://www.flickr.com/photos/donnabellasangels/3364043633/"><img src="http://novelpatient.com/wp-content/uploads/2010/02/3364043633_58003afabb.jpg" alt="Faith (Inspirational Word)" width="262" height="199" align="left" /></a>Through my chronic illness, I have come to realize how crucial it is to have faith.  When most people think of the word &#8220;faith&#8221; they think religion, but there are so many other aspects to keeping faith alive in your life through dark and difficult times.  In fact, the word &#8220;faith&#8221; is merely defined as &#8220;confidence or trust in a person or thing.&#8221;</p>
<p>I have been blessed with always having a tremendous faith in myself.  Faith that I have the ability to get through anything no matter what life rolls my way.  But oddly enough, I believe my faith in myself stemmed from my childhood traumas.  As a child I was forced into the role of the third parent in my house.  As painful as it was it gave me an inner strength &#8212; a knowledge that I was capable of getting through anything if I just believed in myself.</p>
<p>This inner strength and faith in myself was strengthened as I battled depression.  Living for three years with intrusive thoughts on hurting myself or ending my life and yet not acting on them, save three minor occasions, gave me the faith in myself that I could get through anything if I was determined enough.</p>
<p><a title="Hope (Inspirational Word) by donnabellasangels, on Flickr" href="http://www.flickr.com/photos/donnabellasangels/3364865064/"><img src="http://novelpatient.com/wp-content/uploads/2010/02/3364865064_578f6ef506.jpg" alt="Hope (Inspirational Word)" width="269" height="214" align="right" /></a>So when my illness struck, I&#8217;ve always had the faith that I can get through this as well.  Though it isn&#8217;t always easy&#8230; in fact it hardly ever is, I have kept the faith in myself that I am a strong enough person to deal with whatever I find in front of me.  And that faith has gotten me through the endless doctors appointments and tests, the six and half years of searching for a diagnosis, the prolonged hospitalizations, adjusting to life in a wheelchair, and the daily struggle to keep a positive attitude despite my pain and other limitations.</p>
<p>I have also learned how important it is to keep faith that things will get better, that I will get better.  I have to have faith that I <em><strong>will</strong></em><strong> </strong>find a treatment or even a cure that will allow me to live a more normal life again in the future.  This faith that things will be more than okay &#8212; faith that things will get better sustains me during my darkest hours.</p>
<p>And then there&#8217;s faith that I have in others.  I don&#8217;t keep my illness private.  Through this blog, through the people I meet and share my story with, I share my journey with the world.  And I have to have faith in people.  That they will understand.  That they will be there for me.  And though I sometimes find myself disappointed, overall I find that when I put my faith in others they rise to the occasion.  It&#8217;s as if they were waiting for me to put my faith in them.  Waiting for me to put my blind trust and confidence in them, and they respond by being there for me in more ways than I can count.  And I am so blessed and grateful for this.</p>
<p><a title="Heart with a Word - believe by artsyclay, on Flickr" href="http://www.flickr.com/photos/artsyclay/3205046212/"><img src="http://novelpatient.com/wp-content/uploads/2010/02/3205046212_a4ed6625b5.jpg" alt="Heart with a Word - believe" width="279" height="208" align="left" /></a>Finally there is the ultimate faith.  The kind you have despite the lack of evidence or proof.  Faith in God.  Though I try to keep this blog secular, I feel I would be amiss if I didn&#8217;t share this part of my journey.  Though I was raised Reform Jewish, it never really resonated with me.  It is a beautiful religion, but through it was hadn&#8217;t found the close connection to God I&#8217;ve so desperately craved especially in the last few years as I&#8217;ve struggled with my illness.  I&#8217;ve tried out several different churches over the years.  I was going to a Universalist Unitarian church for a while, and though I loved the people and how open they were, I still didn&#8217;t find what I was looking for in terms of a close and personal relationship with God.  Finally, two Sundays ago I went to a Church of Jesus Christ of Latter Day Saints or Mormon church with a friend.  There I finally found what I had been searching for.  I have found the faith in God that I had been seeking.  I realized I had it all along.  I&#8217;ve prayed for a long time to find this closeness to God that I now finally feel, but I never expected to find it through Christ, and yet there it is.  And as surprising as it is to my friends, family, and even myself, I am getting baptized in a month.    And so I am really excited to embark on this new journey of faith.</p>
<p>Faith is so important no matter what form it takes.  When you are suffering physical pain all the time what else do you have to turn to but some sort of faith that things will be okay.  Whether it comes from within or from others or from God, faith is what has sustained me through my battle with chronic illness.</p>
<p><a href="http://novelpatient.com/wp-content/uploads/2010/02/IMG_1046.jpg" rel="shadowbox[post-523];player=img;"><img class="aligncenter size-full wp-image-524" title="At the Mormon Temple" src="http://novelpatient.com/wp-content/uploads/2010/02/IMG_1046.jpg" alt="" width="423" height="563" /></a></p>
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<p><strong>Recent Comments:</strong>
<ul class="recent-comments">
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5226" rel="bookmark" title="March 11, 2010 at 6:53 am"><span class="rc-commenter">Dad</span> commented on <span class="rc-title">Walk By Faith</span></a> Beautiful day to share with you&#8230; Love, Dad P.S. I really do have more hair than the picture shows!</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5224" rel="bookmark" title="March 11, 2010 at 5:11 am"><span class="rc-commenter">alan m rogers</span> commented on <span class="rc-title">Walk By Faith</span></a> Fantastic and amazing. I was baptized (in a hot tub, no less!) just over two years ago. I have fibro</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5221" rel="bookmark" title="March 11, 2010 at 4:51 am"><span class="rc-commenter">Jen Fryer</span> commented on <span class="rc-title">Walk By Faith</span></a> What wonderful news. I cannot tell you how happy I am for you.</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5217" rel="bookmark" title="March 10, 2010 at 9:42 pm"><span class="rc-commenter">Alison</span> commented on <span class="rc-title">Walk By Faith</span></a> I know it can be hard to talk about your faith in this kind of forum, but I&#8217;m glad you did! The best</li>
<li><a href="http://novelpatient.com/2010/02/20/walking-the-power-of-positivity-and-prayer/#comment-5204" rel="bookmark" title="March 10, 2010 at 3:00 am"><span class="rc-commenter">Annette</span> commented on <span class="rc-title">Walking: The Power of Positivity and Prayer</span></a> I heard about the insanely slow taper from someone else, and she had the most success of anyone in a</li>
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		<title>Freedom Drive</title>
		<link>http://novelpatient.com/2010/01/26/freedom-drive/</link>
		<comments>http://novelpatient.com/2010/01/26/freedom-drive/#comments</comments>
		<pubDate>Wed, 27 Jan 2010 01:06:35 +0000</pubDate>
		<dc:creator>Novel Patient</dc:creator>
				<category><![CDATA[Chronic Illness]]></category>
		<category><![CDATA[Life Issues]]></category>
		<category><![CDATA[News]]></category>
		<category><![CDATA[Accessible]]></category>
		<category><![CDATA[blog]]></category>
		<category><![CDATA[Danielle]]></category>
		<category><![CDATA[Drive]]></category>
		<category><![CDATA[Facebook]]></category>
		<category><![CDATA[family]]></category>
		<category><![CDATA[Freedom]]></category>
		<category><![CDATA[friends and family]]></category>
		<category><![CDATA[fundraiser]]></category>
		<category><![CDATA[help]]></category>
		<category><![CDATA[medical expenses]]></category>
		<category><![CDATA[MySpace]]></category>
		<category><![CDATA[option]]></category>
		<category><![CDATA[pain]]></category>
		<category><![CDATA[personal freedoms]]></category>
		<category><![CDATA[place]]></category>
		<category><![CDATA[share]]></category>
		<category><![CDATA[sister]]></category>
		<category><![CDATA[support freedom]]></category>
		<category><![CDATA[Twitter]]></category>
		<category><![CDATA[Vehicle]]></category>
		<category><![CDATA[wheelchair]]></category>
		<category><![CDATA[wheelchair accessible vehicle]]></category>

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		<description><![CDATA[So today my sister Danielle started what we are calling my Freedom Drive - a fundraiser to help me buy a wheelchair accessible vehicle (as well as help with my other medical expenses).]]></description>
			<content:encoded><![CDATA[<p><span style="color: #000000;"><a href="http://novelpatient.com/wp-content/uploads/2010/01/honda-conversion.jpg" rel="shadowbox[post-511];player=img;"><img class="size-full wp-image-512 alignright" title="My Dream Accessible Vehicle" src="http://novelpatient.com/wp-content/uploads/2010/01/honda-conversion.jpg" alt="My Dream Accessible Vehicle" width="266" height="144" align="right" /></a></span></p>
<p><span style="color: #000000;"><em><strong>Freedom is something that is often taken for granted.</strong></em> Freedom comes in a lot of different varieties and all are often taken lightly until you don&#8217;t have that freedom anymore.  Until I got sick I took so many very personal freedoms for granted.  I especially took for granted the freedom to move around  where I want unassisted by a wheelchair and the freedom to drive to any place I wanted.</span></p>
<p><span style="color: #000000;">Now that I can&#8217;t walk and I can&#8217;t drive, those are things that are no longer taken for granted.  And now I am constantly searching for ways to increase my freedoms once more.</span></p>
<p><span style="color: #000000;">Soon I will be getting a specially designed wheelchair that will allow me to be up out of bed in it without being in pain like I am in my current wheelchair.  However, this new wheelchair can only be transported by a wheelchair accessible vehicle, something I cannot afford.</span></p>
<p><span style="color: #000000;"><strong>So today my sister Danielle started what we are calling my <a title="Click To Donate or Help Spread the Word!" href="http://www.giveforward.org/freedomdrive/" target="_blank">Freedom Drive</a> &#8211; a fundraiser to help me buy a wheelchair accessible vehicle (as well as help with my other medical expenses).</strong></span></p>
<p><span style="color: #000000;"><strong>Please consider donating, and, if that isn&#8217;t an option, please share this link with as many people as you can.  Please post it to <a class="zem_slink freebase/en/twitter" title="Twitter" rel="homepage" href="http://twitter.com">Twitter</a>, <a class="zem_slink freebase/en/facebook" title="Facebook" rel="homepage" href="http://facebook.com">Facebook</a>, and <a class="zem_slink freebase/en/myspace" title="MySpace" rel="homepage" href="http://myspace.com">MySpace</a>,  email it to your friends and family, or even blog about it!  Thank you so much for all your help and support!!!</strong></span></p>
<h4><span style="color: #000000;"><a href="http://www.giveforward.org/freedomdrive/" target="_blank"><strong>http://www.giveforward.org/freedomdrive/</strong></a></span></h4>
<p><span style="color: #000000;"><strong><a href="http://www.facebook.com/pages/Laurens-Freedom-Drive/270340999718?v=info" target="_blank">Join the Facebook Freedom Drive Fan Page!</a><br />
</strong></span></p>
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<p><strong>Recent Comments:</strong>
<ul class="recent-comments">
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5226" rel="bookmark" title="March 11, 2010 at 6:53 am"><span class="rc-commenter">Dad</span> commented on <span class="rc-title">Walk By Faith</span></a> Beautiful day to share with you&#8230; Love, Dad P.S. I really do have more hair than the picture shows!</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5224" rel="bookmark" title="March 11, 2010 at 5:11 am"><span class="rc-commenter">alan m rogers</span> commented on <span class="rc-title">Walk By Faith</span></a> Fantastic and amazing. I was baptized (in a hot tub, no less!) just over two years ago. I have fibro</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5221" rel="bookmark" title="March 11, 2010 at 4:51 am"><span class="rc-commenter">Jen Fryer</span> commented on <span class="rc-title">Walk By Faith</span></a> What wonderful news. I cannot tell you how happy I am for you.</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5217" rel="bookmark" title="March 10, 2010 at 9:42 pm"><span class="rc-commenter">Alison</span> commented on <span class="rc-title">Walk By Faith</span></a> I know it can be hard to talk about your faith in this kind of forum, but I&#8217;m glad you did! The best</li>
<li><a href="http://novelpatient.com/2010/02/20/walking-the-power-of-positivity-and-prayer/#comment-5204" rel="bookmark" title="March 10, 2010 at 3:00 am"><span class="rc-commenter">Annette</span> commented on <span class="rc-title">Walking: The Power of Positivity and Prayer</span></a> I heard about the insanely slow taper from someone else, and she had the most success of anyone in a</li>
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		<title>Wheelchair Dance</title>
		<link>http://novelpatient.com/2010/01/17/wheelchair-dance/</link>
		<comments>http://novelpatient.com/2010/01/17/wheelchair-dance/#comments</comments>
		<pubDate>Sun, 17 Jan 2010 08:20:03 +0000</pubDate>
		<dc:creator>Novel Patient</dc:creator>
				<category><![CDATA[Chronic Illness]]></category>
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		<category><![CDATA[wheelchair]]></category>

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		<description><![CDATA[Tonight I wheelchair danced.
But that&#8217;s not where this story starts.
Once upon a time, I was afraid of dancing.  In fact, for most of my life I was afraid of dancing.  I never was super coordinated and I certainly lacked natural rhythm.  I was convinced I couldn&#8217;t dance and that I looked stupid trying.
Later, when I [...]]]></description>
			<content:encoded><![CDATA[<p><span style="color: #800080;"><strong><big>Tonight I wheelchair danced.</big></strong></span></p>
<p>But that&#8217;s not where this story starts.</p>
<p>Once upon a time, I was afraid of dancing.  In fact, for most of my life I was afraid of dancing.  I never was super coordinated and I certainly lacked natural rhythm.  I was convinced I couldn&#8217;t dance and that I looked stupid trying.</p>
<p>Later, when I was old enough to have a few drinks first, I could get up the courage to dance a bit.  And when over a year ago now I ended up in a wheelchair, dancing seemed to be out of the cards forever.</p>
<p>But the world works in mysterious ways.  And someone named <a class="zem_slink" title="Jane McGonigal" rel="blog" href="http://avantgame.com">Jane McGonigal</a> came into my life and with her eventually came her invention <a href="http://topsecret.ning.com/" target="_blank">Top Secret Dance Off</a>.  She and her games have changed my life for the better in innumerable ways and she has truly been a blessing to me, so when I heard about Top Secret Dance Off or TSDO I knew I had to be a part of it.</p>
<p>However, the way you participated in TSDO was by donning a disguise and submitting your video of you dancing to one of the dance challenges.  But I was in a wheelchair.  I could barely dance before.  How could I now?  But I am not so easily dissuaded from something I am determined to do.  So timid at first I made my first and then second video featuring Finger Dancing!<br />
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<object classid="clsid:d27cdb6e-ae6d-11cf-96b8-444553540000" width="456" height="260" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0"><param name="bgcolor" value="#000000" /><param name="flashvars" value="config=http%3A%2F%2Ftopsecret.ning.com%2Fvideo%2Fvideo%2FshowPlayerConfig%3Fid%3D2659035%253AVideo%253A1459%26ck%3D-&amp;video_smoothing=on&amp;autoplay=off&amp;isEmbedCode=1" /><param name="src" value="http://static.ning.com/socialnetworkmain/widgets/video/flvplayer/flvplayer.swf?v=201001141530" /><param name="wmode" value="opaque" /><param name="allowfullscreen" value="true" /><embed type="application/x-shockwave-flash" width="456" height="260" src="http://static.ning.com/socialnetworkmain/widgets/video/flvplayer/flvplayer.swf?v=201001141530" allowfullscreen="true" wmode="opaque" flashvars="config=http%3A%2F%2Ftopsecret.ning.com%2Fvideo%2Fvideo%2FshowPlayerConfig%3Fid%3D2659035%253AVideo%253A1459%26ck%3D-&amp;video_smoothing=on&amp;autoplay=off&amp;isEmbedCode=1" bgcolor="#000000"></embed></object></p>
<p>But then I began to joke to my fellow TSDO players that I would wow them with a wheelchair ballet.  Their response to the idea was so positive that I decided that it was something I had to do.  So I recruited my best friend and caregiver at the time Sarina (a real former ballerina) to help me.  The result wasn&#8217;t something either of us expected and the response to the video blew me away.  People laughed and cried and were moved and inspired.</p>
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<p>For my wheelchair ballet video I won a mask.  The only condition of accepting the new mask as a reward was I had to make a video of me putting on the mask for the first time and dance whatever dance came out using a dance move known as &#8220;the solar eclipse&#8221; which I was told started in the elbows.  To this day I&#8217;m not sure what happened to me when I put on the mask, but my fear of dancing was conquered!  See for yourself&#8230;</p>
<p><object classid="clsid:d27cdb6e-ae6d-11cf-96b8-444553540000" width="455" height="344" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0"><param name="bgcolor" value="#000000" /><param name="flashvars" value="config=http%3A%2F%2Ftopsecret.ning.com%2Fvideo%2Fvideo%2FshowPlayerConfig%3Fid%3D2659035%253AVideo%253A14025%26ck%3D-&amp;video_smoothing=on&amp;autoplay=off&amp;isEmbedCode=1" /><param name="src" value="http://static.ning.com/socialnetworkmain/widgets/video/flvplayer/flvplayer.swf?v=201001141530" /><param name="wmode" value="opaque" /><param name="allowfullscreen" value="true" /><embed type="application/x-shockwave-flash" width="455" height="344" src="http://static.ning.com/socialnetworkmain/widgets/video/flvplayer/flvplayer.swf?v=201001141530" allowfullscreen="true" wmode="opaque" flashvars="config=http%3A%2F%2Ftopsecret.ning.com%2Fvideo%2Fvideo%2FshowPlayerConfig%3Fid%3D2659035%253AVideo%253A14025%26ck%3D-&amp;video_smoothing=on&amp;autoplay=off&amp;isEmbedCode=1" bgcolor="#000000"></embed></object></p>
<p>So tonight I am unmasking myself to all of you because tonight while out to dinner and dancing with my dad and his girl friend I wheelchair danced without any mask at all and I didn&#8217;t have to think twice about it.  And although I didn&#8217;t see it myself, my dad said when I powered on my wheelchair to spin around on the dance floor, the people behind me watching applauded and cheered.</p>
<p>It occurs to me that the world is full of little miracles and hidden blessings like this.  Because without a wheelchair and Jane and TSDO I may have never challenged myself to get over my fear of dancing at all.</p>
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<p><strong>Recent Comments:</strong>
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<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5226" rel="bookmark" title="March 11, 2010 at 6:53 am"><span class="rc-commenter">Dad</span> commented on <span class="rc-title">Walk By Faith</span></a> Beautiful day to share with you&#8230; Love, Dad P.S. I really do have more hair than the picture shows!</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5224" rel="bookmark" title="March 11, 2010 at 5:11 am"><span class="rc-commenter">alan m rogers</span> commented on <span class="rc-title">Walk By Faith</span></a> Fantastic and amazing. I was baptized (in a hot tub, no less!) just over two years ago. I have fibro</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5221" rel="bookmark" title="March 11, 2010 at 4:51 am"><span class="rc-commenter">Jen Fryer</span> commented on <span class="rc-title">Walk By Faith</span></a> What wonderful news. I cannot tell you how happy I am for you.</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5217" rel="bookmark" title="March 10, 2010 at 9:42 pm"><span class="rc-commenter">Alison</span> commented on <span class="rc-title">Walk By Faith</span></a> I know it can be hard to talk about your faith in this kind of forum, but I&#8217;m glad you did! The best</li>
<li><a href="http://novelpatient.com/2010/02/20/walking-the-power-of-positivity-and-prayer/#comment-5204" rel="bookmark" title="March 10, 2010 at 3:00 am"><span class="rc-commenter">Annette</span> commented on <span class="rc-title">Walking: The Power of Positivity and Prayer</span></a> I heard about the insanely slow taper from someone else, and she had the most success of anyone in a</li>
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		<title>De-Stress</title>
		<link>http://novelpatient.com/2010/01/07/de-stress/</link>
		<comments>http://novelpatient.com/2010/01/07/de-stress/#comments</comments>
		<pubDate>Fri, 08 Jan 2010 04:59:16 +0000</pubDate>
		<dc:creator>Novel Patient</dc:creator>
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		<description><![CDATA[I don&#8217;t really know what to write.  I&#8217;ve been kind of a writing funk.  More precisely the stress of everything it getting to me.  I&#8217;m in trouble financially, my doctors aren&#8217;t currently doing anything to help me get better, and I&#8217;ve been doing a lot of &#8220;being there&#8221; for my friends and family which I [...]]]></description>
			<content:encoded><![CDATA[<p>I don&#8217;t really know what to write.  I&#8217;ve been kind of a writing funk.  More precisely the stress of everything it getting to me.  I&#8217;m in trouble financially, my doctors aren&#8217;t currently doing anything to help me get better, and I&#8217;ve been doing a lot of &#8220;being there&#8221; for my friends and family which I am more than happy to do &#8211; it&#8217;s just that its emotionally draining.</p>
<p>It&#8217;s so important to stay stress free when you have any chronic illness but especially one that&#8217;s autoimmune related.  High levels of stress lead to flareups of my illness.</p>
<p>Once upon a time I was a cutter.  Since then I have found other ways to de-stress that don&#8217;t involve hurting myself.  Now I have a little chocolate therapy on occasion (or rather frequently), I watch a favorite movie (usually <a class="zem_slink freebase/en/the_princess_bride_1987" title="The Princess Bride (film)" rel="imdb" href="http://www.imdb.com/title/tt0093779/">The Princess Bride</a> when I&#8217;m not feeling well), I talk to a friend or my sister about what&#8217;s bothering me, I scrapbook, or I force myself to write in this blog.  I&#8217;m feeling a little better already.</p>
<p>What do you do to de-stress when the road gets too bumpy?</p>
<div id="attachment_499" class="wp-caption aligncenter" style="width: 405px"><a href="http://novelpatient.com/wp-content/uploads/2010/01/IMG_0578.jpg" rel="shadowbox[post-498];player=img;"><img class="size-full wp-image-499" title="Peace Book" src="http://novelpatient.com/wp-content/uploads/2010/01/IMG_0578.jpg" alt="" width="395" height="194" /></a><p class="wp-caption-text">A page from my Peace Book.</p></div>
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<p><strong>Recent Comments:</strong>
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<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5226" rel="bookmark" title="March 11, 2010 at 6:53 am"><span class="rc-commenter">Dad</span> commented on <span class="rc-title">Walk By Faith</span></a> Beautiful day to share with you&#8230; Love, Dad P.S. I really do have more hair than the picture shows!</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5224" rel="bookmark" title="March 11, 2010 at 5:11 am"><span class="rc-commenter">alan m rogers</span> commented on <span class="rc-title">Walk By Faith</span></a> Fantastic and amazing. I was baptized (in a hot tub, no less!) just over two years ago. I have fibro</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5221" rel="bookmark" title="March 11, 2010 at 4:51 am"><span class="rc-commenter">Jen Fryer</span> commented on <span class="rc-title">Walk By Faith</span></a> What wonderful news. I cannot tell you how happy I am for you.</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5217" rel="bookmark" title="March 10, 2010 at 9:42 pm"><span class="rc-commenter">Alison</span> commented on <span class="rc-title">Walk By Faith</span></a> I know it can be hard to talk about your faith in this kind of forum, but I&#8217;m glad you did! The best</li>
<li><a href="http://novelpatient.com/2010/02/20/walking-the-power-of-positivity-and-prayer/#comment-5204" rel="bookmark" title="March 10, 2010 at 3:00 am"><span class="rc-commenter">Annette</span> commented on <span class="rc-title">Walking: The Power of Positivity and Prayer</span></a> I heard about the insanely slow taper from someone else, and she had the most success of anyone in a</li>
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		<title>Seeking an Accessible Vehicle</title>
		<link>http://novelpatient.com/2009/12/16/seeking-an-accessible-vehicle/</link>
		<comments>http://novelpatient.com/2009/12/16/seeking-an-accessible-vehicle/#comments</comments>
		<pubDate>Thu, 17 Dec 2009 02:58:28 +0000</pubDate>
		<dc:creator>Novel Patient</dc:creator>
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		<description><![CDATA[While dealing with the emotions that come with getting a permanent wheelchair, Novel Patient tries to find someone to donate a wheelchair accessible vehicle.]]></description>
			<content:encoded><![CDATA[<p>I try to look on the bright side of things.  But when I was evaluated last week for my new permanent wheelchair last week, it brought up some unexpected feelings.</p>
<p>I&#8217;ve been feeling this odd sort of guilt.  Part of me feels like a failure and a quitter for finally working on getting a permanent and actually comfortable wheelchair.  I feel like it is symbolic of giving up on getting better even though I know that is not the case.  Rationally I know that my current wheelchair which was never meant to be a permanent solution is keeping me from getting the highest quality of life under the circumstances.  Right now I can&#8217;t be comfortable and in my wheelchair at the same time.  It doesn&#8217;t fit me well and causes me additional pain.  When I consider going to a movie on a rare occasion, I usually decline because I just can&#8217;t sit in my chair that long.</p>
<p>The new chair is going to be custom built to fit me.  It will allow me to be up and out of bed more of the day.  The whole chair tilts back to take the weight off my butt when I need it to and the feet also elevate which will help keep my ankles from throbbing.  It will have a custom pressure relieving cushion to sit on and the back rest will actually be tall enough to be useful.</p>
<p>All of this will help me become no longer bed-bound most of the time.  Which will be great. Yet some part of me still feels guilty.</p>
<p>The good news is that it comes in purple!  So that is what I am trying to focus on.  Not that I need a permanent chair, but the color.  It may sound silly, but it really does help.<a href="http://novelpatient.com/wp-content/uploads/2009/12/400-TDX-SC-POWER-TILT.gif" rel="shadowbox[post-487];player=img;"><img class="aligncenter size-full wp-image-488" title="400-TDX-SC-POWER-TILT" src="http://novelpatient.com/wp-content/uploads/2009/12/400-TDX-SC-POWER-TILT.gif" alt="400-TDX-SC-POWER-TILT" width="400" height="400" /></a></p>
<p>The other issue is that I do not have wheelchair accessible transportation.  I won&#8217;t be able to take my new chair anywhere without it.  My current wheelchair is meant to travel &#8212; it comes apart into 3 lighter pieces that we can put in the car.  If I can&#8217;t take my new wheelchair out of the apartment, I&#8217;ll be just as stuck as I am now &#8212; in too much pain to get out and do anything.  And with SSI my only source of income, I cannot afford to even buy a used one.  So I am on a mission to find someone who will donate a wheelchair accessible vehicle using the power of social networking tools like <a class="zem_slink freebase/en/twitter" title="Twitter" rel="homepage" href="http://twitter.com">Twitter</a>, <a class="zem_slink freebase/en/facebook" title="Facebook" rel="homepage" href="http://facebook.com">Facebook</a>, and even this blog.</p>
<p>In case you are wondering, if money were no object, I would get a wheelchair accessible Honda Element.  But it would be a holiday season miracle if I could get any vehicle that can safely transport me to and from my doctors appointments that are about an hour away and anywhere else I needed to go more locally.  I will not be driving it, so I need the conversion to be for the passenger side.</p>
<p>I have approximately  3 months before I will be getting my new chair.  So consider this a call to action!  Please help me spread the word!  Please take a minute to post this to your Twitter or <a class="zem_slink freebase/en/myspace" title="MySpace" rel="homepage" href="http://myspace.com">MySpace</a> or Facebook or anything else you can think of!  The more people who see this the greater the chance one of them will have a vehicle for me.  Words simply cannot express how grateful I am for your help.</p>
<p><a href="http://novelpatient.com/wp-content/uploads/2009/12/honda-conversion.jpg" rel="shadowbox[post-487];player=img;"><img class="aligncenter size-full wp-image-492" title="honda-conversion" src="http://novelpatient.com/wp-content/uploads/2009/12/honda-conversion.jpg" alt="honda-conversion" width="350" height="190" /></a></p>
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<p><strong>Recent Comments:</strong>
<ul class="recent-comments">
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5226" rel="bookmark" title="March 11, 2010 at 6:53 am"><span class="rc-commenter">Dad</span> commented on <span class="rc-title">Walk By Faith</span></a> Beautiful day to share with you&#8230; Love, Dad P.S. I really do have more hair than the picture shows!</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5224" rel="bookmark" title="March 11, 2010 at 5:11 am"><span class="rc-commenter">alan m rogers</span> commented on <span class="rc-title">Walk By Faith</span></a> Fantastic and amazing. I was baptized (in a hot tub, no less!) just over two years ago. I have fibro</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5221" rel="bookmark" title="March 11, 2010 at 4:51 am"><span class="rc-commenter">Jen Fryer</span> commented on <span class="rc-title">Walk By Faith</span></a> What wonderful news. I cannot tell you how happy I am for you.</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5217" rel="bookmark" title="March 10, 2010 at 9:42 pm"><span class="rc-commenter">Alison</span> commented on <span class="rc-title">Walk By Faith</span></a> I know it can be hard to talk about your faith in this kind of forum, but I&#8217;m glad you did! The best</li>
<li><a href="http://novelpatient.com/2010/02/20/walking-the-power-of-positivity-and-prayer/#comment-5204" rel="bookmark" title="March 10, 2010 at 3:00 am"><span class="rc-commenter">Annette</span> commented on <span class="rc-title">Walking: The Power of Positivity and Prayer</span></a> I heard about the insanely slow taper from someone else, and she had the most success of anyone in a</li>
</ul>
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		<title>Blogiversary: A Belated Thanksgiving</title>
		<link>http://novelpatient.com/2009/12/09/blogiversary-a-belated-thanksgiving/</link>
		<comments>http://novelpatient.com/2009/12/09/blogiversary-a-belated-thanksgiving/#comments</comments>
		<pubDate>Thu, 10 Dec 2009 06:18:07 +0000</pubDate>
		<dc:creator>Novel Patient</dc:creator>
				<category><![CDATA[Chronic Illness]]></category>
		<category><![CDATA[Doctors]]></category>
		<category><![CDATA[News]]></category>
		<category><![CDATA[best friend]]></category>
		<category><![CDATA[blog]]></category>
		<category><![CDATA[caregiver]]></category>
		<category><![CDATA[dad]]></category>
		<category><![CDATA[doctor]]></category>
		<category><![CDATA[dog]]></category>
		<category><![CDATA[holiday cards]]></category>
		<category><![CDATA[journey]]></category>
		<category><![CDATA[mom]]></category>
		<category><![CDATA[novel]]></category>
		<category><![CDATA[patient]]></category>
		<category><![CDATA[patient community]]></category>
		<category><![CDATA[readership]]></category>
		<category><![CDATA[thanksgiving]]></category>
		<category><![CDATA[ups and downs]]></category>
		<category><![CDATA[year anniversary]]></category>

		<guid isPermaLink="false">http://novelpatient.com/?p=476</guid>
		<description><![CDATA[When you are sick all the time you often have to (sometimes unwilling) rely on the help and support of other people.  And that is something that should not be taken for granted.  So today, on the one year anniversary of this blog, I feel like I really have to thank all of you who [...]]]></description>
			<content:encoded><![CDATA[<p>When you are sick all the time you often have to (sometimes unwilling) rely on the help and support of other people.  And that is something that should not be taken for granted.  So today, on the one year anniversary of this blog, I feel like I really have to thank all of you who have joined me in my journey as a novel patient.  During the ups and downs of this last year, your comments and support have been such a source of strength for me to draw upon.  And this blog has come a long long way since <a href="http://novelpatient.com/2008/12/09/on-being-a-novel-patient/" target="_blank">my first post</a>.  Not only has its readership grown, but its pushed me to improve as a writer.  It&#8217;s even spawned the <a href="http://community.novelpatient.com" target="_blank">Novel Patient Community</a> where every novel patient can have their own blog.</p>
<p>Though it has been a rough year in many ways, I am thankful for so many things.  I am thankful for a mom who not only lets me, her 26 year old daughter, live with her, but helps take care of me.  I am thankful for a dad who cares so much for me that he will always try and do what he thinks is best for me.  I am grateful for a caregiver who I also consider a close friend and a also for a best friend who I know will always be there for me when I need her.  I am thankful for a wonderfully supportive sister.  I am thankful for a cuddly dog that adores me.</p>
<p>I am also thankful for my doctors who have often gone out of their way to make sure I get the care I need.  I know I am a very complicated case to have to deal with.  This year I decided to make the five of my doctor&#8217;s I see the most handmade holiday cards to let them know how much I appreciate what they do for me.</p>

<a href='http://novelpatient.com/wp-content/uploads/2009/12/holidaycard5.jpg' rel='shadowbox[post-476];player=img;' title='holidaycard5'><img width="150" height="150" src="http://novelpatient.com/wp-content/uploads/2009/12/holidaycard5-150x150.jpg" class="attachment-thumbnail" alt="" title="holidaycard5" /></a>
<a href='http://novelpatient.com/wp-content/uploads/2009/12/holidaycard4.jpg' rel='shadowbox[post-476];player=img;' title='holidaycard4'><img width="150" height="150" src="http://novelpatient.com/wp-content/uploads/2009/12/holidaycard4-150x150.jpg" class="attachment-thumbnail" alt="" title="holidaycard4" /></a>
<a href='http://novelpatient.com/wp-content/uploads/2009/12/holidaycard3.jpg' rel='shadowbox[post-476];player=img;' title='holidaycard3'><img width="150" height="150" src="http://novelpatient.com/wp-content/uploads/2009/12/holidaycard3-150x150.jpg" class="attachment-thumbnail" alt="" title="holidaycard3" /></a>
<a href='http://novelpatient.com/wp-content/uploads/2009/12/holidaycard2.jpg' rel='shadowbox[post-476];player=img;' title='holidaycard2'><img width="150" height="150" src="http://novelpatient.com/wp-content/uploads/2009/12/holidaycard2-150x150.jpg" class="attachment-thumbnail" alt="" title="holidaycard2" /></a>
<a href='http://novelpatient.com/wp-content/uploads/2009/12/holidaycard1.jpg' rel='shadowbox[post-476];player=img;' title='holidaycard1'><img width="150" height="150" src="http://novelpatient.com/wp-content/uploads/2009/12/holidaycard1-150x150.jpg" class="attachment-thumbnail" alt="" title="holidaycard1" /></a>

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<p><strong>Recent Comments:</strong>
<ul class="recent-comments">
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5226" rel="bookmark" title="March 11, 2010 at 6:53 am"><span class="rc-commenter">Dad</span> commented on <span class="rc-title">Walk By Faith</span></a> Beautiful day to share with you&#8230; Love, Dad P.S. I really do have more hair than the picture shows!</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5224" rel="bookmark" title="March 11, 2010 at 5:11 am"><span class="rc-commenter">alan m rogers</span> commented on <span class="rc-title">Walk By Faith</span></a> Fantastic and amazing. I was baptized (in a hot tub, no less!) just over two years ago. I have fibro</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5221" rel="bookmark" title="March 11, 2010 at 4:51 am"><span class="rc-commenter">Jen Fryer</span> commented on <span class="rc-title">Walk By Faith</span></a> What wonderful news. I cannot tell you how happy I am for you.</li>
<li><a href="http://novelpatient.com/2010/03/09/walk-by-faith/#comment-5217" rel="bookmark" title="March 10, 2010 at 9:42 pm"><span class="rc-commenter">Alison</span> commented on <span class="rc-title">Walk By Faith</span></a> I know it can be hard to talk about your faith in this kind of forum, but I&#8217;m glad you did! The best</li>
<li><a href="http://novelpatient.com/2010/02/20/walking-the-power-of-positivity-and-prayer/#comment-5204" rel="bookmark" title="March 10, 2010 at 3:00 am"><span class="rc-commenter">Annette</span> commented on <span class="rc-title">Walking: The Power of Positivity and Prayer</span></a> I heard about the insanely slow taper from someone else, and she had the most success of anyone in a</li>
</ul>
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