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		<title>Guest Post: Finding the Right Doctor Is Critical to Health and Happiness</title>
		<link>http://lupinelife.com/2013/05/22/finding_the_right_doctor/</link>
		<comments>http://lupinelife.com/2013/05/22/finding_the_right_doctor/#comments</comments>
		<pubDate>Wed, 22 May 2013 16:00:17 +0000</pubDate>
		<dc:creator>lupinelife</dc:creator>
				<category><![CDATA[lupus]]></category>
		<category><![CDATA[Autoimmune disease]]></category>
		<category><![CDATA[Health]]></category>
		<category><![CDATA[Patient]]></category>

		<guid isPermaLink="false">http://lupinelife.com/?p=1171</guid>
		<description><![CDATA[I&#8217;m excited to welcome Tali Wee as a guest blogger this week in honor of Lupus Awareness Month! You&#8217;ll find more info about her in the bio below.  As patients, doctors are our teachers, our mentors, our guidance through frightening decision-making and sometimes even our heroes.  With their hard-earned knowledge, they can cure our ailments&#160;&#8230; <a href="http://lupinelife.com/2013/05/22/finding_the_right_doctor/">Read&#160;more</a><img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1171&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></description>
				<content:encoded><![CDATA[<p><em>I&#8217;m excited to welcome Tali Wee as a guest blogger this week in honor of <strong>Lupus Awareness Month</strong>! You&#8217;ll find more info about her in the bio below. </em></p>
<p>As patients, doctors are our teachers, our mentors, our guidance through frightening decision-making and sometimes even our heroes.  With their hard-earned knowledge, they can cure our ailments and treat our symptoms.  Doctors also carry power with their titles; their judgment calls become the main influencers of our medical elections.  It’s vital that we trust, respect and believe in our doctors.  And isn’t it important that our doctors also believe in our shared vision of health?</p>
<p><img class=" wp-image-1174 alignleft" style="margin:4px;" alt="Finding the Right Doctor" src="http://lupinelifedotcom.files.wordpress.com/2013/05/square-apple-with-meds-image.jpg?w=263&#038;h=263" width="263" height="263" />To treat my autoimmune disease, I’ve seen many doctors throughout the last 15 years.  Automatically I would give them my trust, hoping that they would be &#8220;the one&#8221; to fix me.  But time and again, I felt frustrated and downright confused.  Autoimmune disorders are still perplexing in Western medicine where every finding must be proven precisely with facts.  Some of us carry blood, urine or genetic markers to test positive and confirm the hunches of our doctors.  When patients test negative to all of their doctor’s hunches, the doctors can become discouraged and begin disbelieving their patients.</p>
<p>Unfortunately, this happened to me.  I was told by the leading rheumatologist in the nation that my symptoms must be the result of a low pain threshold.  I was 14 years old.  Even then, I knew my two years of steroid treatment were not the best path to healing, especially if my doctor didn’t believe me.  Since that day, I shook my doctor’s hand and never visited him again.  With a bruised self-esteem, I tried naturopathic medicine and consulted with several other doctors over the years.  Most importantly, I continued to search for the right doctor.</p>
<p>What I’ve learned, and Amber’s mother reiterates, is that patients must become their own best advocates.  Doctors cannot see the future or know the full scope before performing tests.  But good doctors listen to their patients, gather information and develop health strategies in partnership with their patients.  That’s why we pay them the big bucks.  If your experience with a particular doctor has been negative, then maybe it’s time to find a new one.</p>
<p>Luckily, my mom’s general practitioner recommended a young doctor she really trusted.  I was ready to give it another try and after two visits I knew she was the one.  This doctor believed me, was puzzled by the negative tests and inspired by the challenge of getting to the source of the pain.  After about six months of treatment, she ran a bone scan.  This was the first and only test that validated that my pain is real, and it even identified bone deterioration in the specific areas of discomfort.  Even if we had done nothing else, my doctor’s persistence brought me peace of mind.  Since then, we have taken a more aggressive approach to treatment since the scan revealed my 23-year-old bones looked like those of a 70-year-old woman.</p>
<p>Dr. Hsu was the first doctor who believed me foremost, aside from the science.  If you’re struggling to find the right doctor to act as your health strategist, don’t give up. You know your body better than anyone, and should continue searching until you’re heard.  Here are a few ways I measured my experiences when searching for my hero doctor.</p>
<p><strong>     </strong>  1.   <strong>Ask Around for Referrals</strong></p>
<p>There is no shame in telling people you have an autoimmune disorder.  In fact, I’ve found that it helps others understand me better.  The more networking you can do, the more opportunity there will be to hear about a quality, caring doctor in the area.</p>
<p>2.   <strong>Arrive With Questions</strong></p>
<p>Always show up with a list of questions for the doctor.  Be aware of how thoroughly the doctor or nurse answers those questions.  If it’s a consultation, make a list of symptoms prior to the visit to be sure to mention all of the elements of your condition.  If it’s a reoccurring appointment, keep track of any new symptoms and estimate the amount of time you ache in particular areas.  Doctors should care about these details and address all patient concerns.</p>
<p>3.   <strong>Analyze the Doctor’s Body Language</strong></p>
<p>When I’m explaining a symptom, I want the doctor’s full attention.  Watch for eye contact, emotion or concern.  Good doctors want to help and will respond appropriately.  Taking notes is normal, but if they are constantly looking at note pads instead of you, they aren’t absorbing the whole scope of the disorder.  My doctor listens to my words, but told me about two years into treatment that she knows how I’m <i>really</i> doing by my energy in the room.  That’s an attentive doctor!</p>
<p>4.   <strong>Evaluate Post-Appointment Influence</strong></p>
<p>After meeting with the doctor, think about how you feel.  This is the most impactful aspect of measuring a great doctor.  You should feel encouraged that you’re taking action to get well, feel empowered with a plan and relieved that you and the doctor are on the same page.  If you’re anything but reassured, it’s time to reach out for referrals.</p>
<p>5.   <strong>Consider Your Anxiety Level Before the Next Appointment</strong></p>
<p>I look forward to the next visit with my doctor because she always makes me feel better about my condition and plan of action.  Sometimes I dread it because I haven’t done my homework of physical activity.  But I don’t ever feel anxious about my appointment or treatment.  If you’re feeling appointment anxiety it’s a red flag that you and your doctor are not a good match!</p>
<p>6.   <strong>Gauge The Office Mood</strong></p>
<p>Is the doctor’s office a positive place to visit?  Most medical offices are highly sterile and somewhat intense, which is okay because it makes me feel like they take health seriously.  But, if the staff isn’t helpful or kind then it’s probably not an area where great work is taking place.  Try to find a cohesively functioning team of doctors, nurses and administrative staff.  That way, you can trust all parties involved in your health.</p>
<p>Since finding the right doctor, I’m empowered by my treatment plan.  I have control of my inflammation and medicate my bone deterioration appropriately.  This proper treatment dramatically changed my life for the better, which was made possible by finding a doctor who believed and cared for me.  I encourage you to share your experiences with others in your area to spread the word about great doctors and get everyone the help they deserve.</p>
<p><em>Tali Wee currently blogs about life in the Northwest and handles the community outreach for <a href="http://www.zillow.com/albuquerque-nm/">Zillow</a>. She owns <a href="http://www.weepicketfences.com/">Wee Picket Fences</a> where she writes about being a foodie, new homeowner, bargain hunter and activity enthusiast. Tali enjoys family, food, travel, writing and spending time on projects around the house.</em></p>
<br />Filed under: <a href='http://lupinelife.com/category/lupus/'>lupus</a> Tagged: <a href='http://lupinelife.com/tag/autoimmune-disease/'>Autoimmune disease</a>, <a href='http://lupinelife.com/tag/health/'>Health</a>, <a href='http://lupinelife.com/tag/patient/'>Patient</a> <a rel="nofollow" href="http://feeds.wordpress.com/1.0/gocomments/lupinelifedotcom.wordpress.com/1171/"><img alt="" border="0" src="http://feeds.wordpress.com/1.0/comments/lupinelifedotcom.wordpress.com/1171/" /></a> <img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1171&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></content:encoded>
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		<title>Top Baby Gear</title>
		<link>http://lupinelife.com/2013/05/14/top_baby_gear/</link>
		<comments>http://lupinelife.com/2013/05/14/top_baby_gear/#comments</comments>
		<pubDate>Tue, 14 May 2013 19:48:40 +0000</pubDate>
		<dc:creator>lupinelife</dc:creator>
				<category><![CDATA[Baby]]></category>
		<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[Aiden]]></category>
		<category><![CDATA[BabyBjorn]]></category>
		<category><![CDATA[Bouncer]]></category>
		<category><![CDATA[Co-sleeper]]></category>
		<category><![CDATA[Ergo Baby]]></category>
		<category><![CDATA[High chair]]></category>
		<category><![CDATA[Infant]]></category>
		<category><![CDATA[Mother's Day]]></category>
		<category><![CDATA[Swaddler]]></category>

		<guid isPermaLink="false">http://lupinelife.com/?p=1162</guid>
		<description><![CDATA[Happy (belated) Mother&#8217;s Day!!! I hope all the moms out there  had a wonderful day, and I hope everyone else found a way to let their moms know they care. This was my very first Mother&#8217;s Day, and my lovely husband made the whole weekend special. So in honor of new moms and moms-to-be, I&#160;&#8230; <a href="http://lupinelife.com/2013/05/14/top_baby_gear/">Read&#160;more</a><img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1162&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></description>
				<content:encoded><![CDATA[<p>Happy (belated) Mother&#8217;s Day!!! I hope all the moms out there  had a wonderful day, and I hope everyone else found a way to let their moms know they care. This was my very first Mother&#8217;s Day, and my lovely husband made the whole weekend special. So in honor of new moms and moms-to-be, I thought I&#8217;d share some of my favorite baby gear.</p>
<p>I don&#8217;t know about you, but I was completely overwhelmed by the vast array of goodies out there. In fact, when my husband and I walked around Babies &#8216;R&#8217; Us, scanning items into our baby registry, we walked out with only three items scanned. I added more items eventually, but only after researching them for safety and customer satisfaction, and even then carefully considering whether or not I thought the item was an absolute necessity.</p>
<p>Despite my caution, I still found myself lacking certain items that I hadn&#8217;t thought I&#8217;d need, and I found myself storing items that I&#8217;d purchased too soon and wishing I had the storage space for something more immediately useful. So I&#8217;ll start with my must-haves and end with my don&#8217;t needs:</p>
<ol>
<li><strong><span style="text-decoration:underline;">Bouncer</span></strong> &#8211; I&#8217;m referring to the lightweight, wire-rimmed chairs that are super mobile and so very versatile. Mine came with a removable toy bar and the chair vibrates. My son didn&#8217;t like the toys until he was four months old, so I&#8217;m glad the bar was easy to remove. He also loathes the vibration, so I keep that switched off. The bouncer is great for keeping him close to me while I do dishes, cook, go to the bathroom, etc. And now that I&#8217;m introducing him to solids, the bouncer makes feeding him super easy.</li>
<li><strong><span style="text-decoration:underline;">Swaddlers</span></strong> &#8211; Your typical receiving blanket is rectangular and on the small side. It works okay for small newborns. However, if you have a baby like mine (almost nine pounds, long, and extremely wiggly), these blankets serve only one purpose: To frustrate the hell out of you. Okay, two purposes: They make excellent burp cloths. If you&#8217;re going to go the blanket route regardless, I highly recommend the receiving blankets made by Aiden &amp; Anais that are made of muslin. They&#8217;re huge, and more importantly, they&#8217;re square. The shape is key because to properly swaddle a baby, you need to start out with a diamond-shaped blanket. A rectangular blanket cannot be made a diamond, no matter how hard you try. They&#8217;re pricey, but man are they worth it. Besides, the large size makes them useful for other things such as shielding your baby from the sun when pushing them in a stroller. But when your baby&#8217;s brand new and you&#8217;re sleep deprived and not thinking clearly, I recommend using an actual swaddler. There are several brands out there, but they are all basically designed the same. It&#8217;s a sack with arm holes, a zipper down the front, and wings that cross snugly over each other and velcro to the sack. When you have a Houdini baby like mine, swaddlers are the only thing keeping your baby&#8217;s arms from wriggling free and waking him/her up each time he/she startles. Hooray for sleep!</li>
<li><span style="text-decoration:underline;"><strong>Cheap burp cloths</strong></span> &#8211; You never know what traits your baby will have; mine is a puker. I go through the euphamistically named burp cloths by the dozen, per day. Don&#8217;t waste your money on pricey ones or on ones that are cute. There&#8217;s nothing cute about &#8220;spit-up.&#8221; You&#8217;ll be using these things to wipe up breastmilk/formula off your baby&#8217;s face, arms, chest, legs, clothes, bedding, floor, and at times your hair.</li>
<li><span style="text-decoration:underline;"><strong>Board Books</strong></span> &#8211; I started reading to my baby every night from the time he was about three months old. At first it just signaled to him that it was snuggle time, but now he&#8217;s really interested in the pictures and follows along. Some of his favorites: <em>The Very Hungry Caterpillar</em>; <em>Goodnight, Moon</em>; and <em>Mr. Brown Can Moo, Can You?</em></li>
<li><strong><span style="text-decoration:underline;">Soft, Quiet Rattles</span></strong> &#8211; Every baby&#8217;s different, and mine hates the sharp, loud sounds of a traditional rattle. What he prefers is the muffled rattle that comes from a squishy, fuzzy rattle. He also likes the soft clang that kind of sounds like a bell.</li>
<li><span style="text-decoration:underline;"><strong>Baby Bjorn</strong></span> &#8211; My aunt bought me this carrier, and I promptly exchanged it for an Ergo Baby when a friend of mine told me how much more she liked it. I hated the Ergo Baby. It was complicated and made my baby cry. The Baby Bjorn, however, is straight forward, no muss no fuss. Maybe when my son gets a little older, we can can try the Ergo once more. Until then, we&#8217;re very satisfied with the Baby Bjorn.</li>
<li><span style="text-decoration:underline;"><strong>Baby Monitor</strong></span> &#8211; I have the Angelcare baby monitor that has a motion sensor you put under the mattress. FREAKIN&#8217; AWESOME! Most of the time I have the sound turned way down because I live in a small enough place that I can hear him when he wakes up. But the peace of mind that comes with knowing an alarm will sound if the monitor doesn&#8217;t detect motion is totally worth it. Also, you can set the alarm to go off if the room dips below or rises above specific temperatures. This is great for me since my son&#8217;s room is always a drastically different temperature than my bedroom.</li>
<li><strong><span style="text-decoration:underline;">My Brest Friend</span></strong> &#8211; I like this feeding pad better than the Boppy because it&#8217;s firmer, providing more support, and it has a little back support for mom.</li>
<li><span style="text-decoration:underline;"><strong>Nursing Stool</strong></span> &#8211; A footstool that has an adjustable board to suit whichever angle you like best, this little stool is a calf muscle and back saver! Especially when you use a feeding pad, you&#8217;ll find that you&#8217;re on your toes and hunched over in order to get your baby to your breast. This alleviates all of that nonsense.</li>
</ol>
<p><strong>Things to Postpone Buying (or not buy at all):</strong></p>
<p>The reason I say postpone is because every baby&#8217;s different; they have their own personalities and likes and dislikes. You don&#8217;t really know what&#8217;s going to be useful until they get a little older.</p>
<ol>
<li><strong><span style="text-decoration:underline;">Swing</span></strong> &#8211; Case in point, everyone says swings are a lifesaver for parents. Not for me. My son has always hated and apparently will always hate his swing. Either wait to buy one until after your baby is born and you&#8217;ve had a chance to put him/her into your friend&#8217;s or a store display&#8217;s, or save your receipt just in case it turns out the swing ain&#8217;t so special after all.</li>
<li><span style="text-decoration:underline;"><strong>High chair</strong></span> &#8211; Now that my baby is five months old, he just started eating solids. But he&#8217;s still not using his high chair. Instead, I put him in his bouncy chair. He&#8217;s only eating about a tablespoon of food at a time right now, and I&#8217;m spoon feeding him, so there&#8217;s really no reason to bust out the high chair as yet. Save your money for more immediate needs, like diapers, and purchase a high chair later on when your baby actually needs his own perch from which he can fling food to his heart&#8217;s desire.</li>
<li><span style="text-decoration:underline;"><strong>Co-Sleeper</strong></span> &#8211; I attached this little bed to mine and promptly forgot what it was like to sleep for more than 10 minutes at a time. Baby&#8217;s are LOUD SLEEPERS. I awoke constantly because I thought my son was awake. And visions of me conveniently picking up my baby from his bassinet and feeding him in bed were also promptly quashed. I don&#8217;t know what kind of boobs you need in order to feed in the side-lying position, but I don&#8217;t have &#8216;em. My advice, buy a bassinet, but one that&#8217;s freestanding. Despite all my worrying, I never slept better than when I put my sweet little babe into his crib&#8211;in his own room.</li>
</ol>
<br />Filed under: <a href='http://lupinelife.com/category/baby/'>Baby</a>, <a href='http://lupinelife.com/category/uncategorized/'>Uncategorized</a> Tagged: <a href='http://lupinelife.com/tag/aiden/'>Aiden</a>, <a href='http://lupinelife.com/tag/babybjorn/'>BabyBjorn</a>, <a href='http://lupinelife.com/tag/bouncer/'>Bouncer</a>, <a href='http://lupinelife.com/tag/co-sleeper/'>Co-sleeper</a>, <a href='http://lupinelife.com/tag/ergo-baby/'>Ergo Baby</a>, <a href='http://lupinelife.com/tag/high-chair/'>High chair</a>, <a href='http://lupinelife.com/tag/infant/'>Infant</a>, <a href='http://lupinelife.com/tag/mothers-day/'>Mother's Day</a>, <a href='http://lupinelife.com/tag/swaddler/'>Swaddler</a> <a rel="nofollow" href="http://feeds.wordpress.com/1.0/gocomments/lupinelifedotcom.wordpress.com/1162/"><img alt="" border="0" src="http://feeds.wordpress.com/1.0/comments/lupinelifedotcom.wordpress.com/1162/" /></a> <img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1162&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></content:encoded>
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		<title>Hospital for Special Surgery</title>
		<link>http://lupinelife.com/2013/05/11/hospital-for-special-surgery/</link>
		<comments>http://lupinelife.com/2013/05/11/hospital-for-special-surgery/#comments</comments>
		<pubDate>Sun, 12 May 2013 02:39:27 +0000</pubDate>
		<dc:creator>lupinelife</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[lupus]]></category>

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		<description><![CDATA[Join the conversation! Just &#8220;like&#8221; Hospital for Special Surgery on Facebook to take part in a chat about Lupus, hosted by HSS and S.L.E. Lupus Foundation Filed under: Uncategorized Tagged: lupus<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1156&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></description>
				<content:encoded><![CDATA[<p><img src="http://lupinelifedotcom.files.wordpress.com/2013/05/lupusandgeneralhealthfb.jpg?w=640" class="size-full" alt="Hospital for Special Surgery" /></p>
<p>Join the conversation! Just &#8220;like&#8221; Hospital for Special Surgery on Facebook to take part in a chat about Lupus, hosted by HSS and S.L.E. Lupus Foundation</p>
<br />Filed under: <a href='http://lupinelife.com/category/uncategorized/'>Uncategorized</a> Tagged: <a href='http://lupinelife.com/tag/lupus/'>lupus</a> <a rel="nofollow" href="http://feeds.wordpress.com/1.0/gocomments/lupinelifedotcom.wordpress.com/1156/"><img alt="" border="0" src="http://feeds.wordpress.com/1.0/comments/lupinelifedotcom.wordpress.com/1156/" /></a> <img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1156&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></content:encoded>
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		<item>
		<title>Lupus Awareness Month: Fear and Loathing</title>
		<link>http://lupinelife.com/2013/05/04/lupus_awareness_month/</link>
		<comments>http://lupinelife.com/2013/05/04/lupus_awareness_month/#comments</comments>
		<pubDate>Sat, 04 May 2013 22:19:22 +0000</pubDate>
		<dc:creator>lupinelife</dc:creator>
				<category><![CDATA[lupus]]></category>
		<category><![CDATA[Flare]]></category>
		<category><![CDATA[Lupus Awareness Month]]></category>

		<guid isPermaLink="false">http://lupinelife.com/?p=1148</guid>
		<description><![CDATA[May is Lupus Awareness month, and between communing with other lupies via twitter and facebook and writing blog posts, I&#8217;m trying to do all I can to raise awareness for a disease that most people know nothing about yet that affects more people than many other well-publicized diseases. Click here for more info about lupus.&#160;&#8230; <a href="http://lupinelife.com/2013/05/04/lupus_awareness_month/">Read&#160;more</a><img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1148&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></description>
				<content:encoded><![CDATA[<p>May is Lupus Awareness month, and between communing with other lupies via twitter and facebook and writing blog posts, I&#8217;m trying to do all I can to raise awareness for a disease that most people know nothing about yet that affects more people than many other well-publicized diseases. <a href="http://lupinelife.com/what-is-lupus/" target="_blank">Click here</a> for more info about lupus.</p>
<p>It&#8217;s been nearly five years since <a href="http://lupinelife.com/about/">I first began experiencing symptoms</a>. And while I had the immense luck of having virtually no symptoms for more than a year, I just had the worst flare since I was diagnosed. It made me realize a number of things:</p>
<ol>
<li><span class="Apple-style-span" style="line-height:13px;">I had convinced myself that my lupus had gone into remission&#8211;possibly forever&#8211;or that I was somehow miraculously cured. </span></li>
<li>I pitied and sometimes was just morbidly curious about other lupies&#8217; more serious symptoms and their long lists of medications. Neither of these sentiments fall under &#8220;sympathy&#8221; or even &#8220;empathy.&#8221;</li>
<li>I don&#8217;t have a contingency plan for living with lupus.</li>
</ol>
<p>From the list above, you can conclude that I&#8217;m naive, self-centered, and&#8230; naive once again. As I lay in bed huddled under four heavy blankets, shivering due to a sudden fever, I tried unsuccessfully to soothe my wailing baby who was lying next to me. He had bonked his head and was having a bit of time getting over it. My husband had no luck soothing him and it was up to me. It was getting late. I was exhausted. My muscles didn&#8217;t want to function anymore, and my body felt alternately like it was on fire and like I had bugs crawling all over me. As I held my baby in my shaking arms, I realized I was doing more harm than good, so I laid him on the bed next to me and eventually we both fell asleep.</p>
<p>But just before I fell asleep, I started to cry. My husband asked me what was wrong, and I told him the truth: &#8220;I&#8217;m just feeling sorry for myself.&#8221;</p>
<p>And I was. I felt sorry for myself because I suddenly realized I didn&#8217;t have a plan for caring for my son during a flare. I felt sorry for myself because I realized that my medication was not the wonder cure-all that I&#8217;d convinced myself it was. I felt sorry for myself because I was afraid: How many other lupies&#8217; stories had I read that were filled with descriptions of terrible symptoms and pain?</p>
<p>So there it is. It&#8217;s Lupus Awareness Month, and I&#8217;m suddenly very aware of lupus and its impact on my life and who I am.</p>
<br />Filed under: <a href='http://lupinelife.com/category/lupus/'>lupus</a> Tagged: <a href='http://lupinelife.com/tag/flare/'>Flare</a>, <a href='http://lupinelife.com/tag/lupus/'>lupus</a>, <a href='http://lupinelife.com/tag/lupus-awareness-month/'>Lupus Awareness Month</a> <a rel="nofollow" href="http://feeds.wordpress.com/1.0/gocomments/lupinelifedotcom.wordpress.com/1148/"><img alt="" border="0" src="http://feeds.wordpress.com/1.0/comments/lupinelifedotcom.wordpress.com/1148/" /></a> <img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1148&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></content:encoded>
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			<media:title type="html">lupus awareness month</media:title>
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		<title>Trying to Do It All</title>
		<link>http://lupinelife.com/2013/04/30/trying-to-do-it-all/</link>
		<comments>http://lupinelife.com/2013/04/30/trying-to-do-it-all/#comments</comments>
		<pubDate>Tue, 30 Apr 2013 16:00:28 +0000</pubDate>
		<dc:creator>lupinelife</dc:creator>
				<category><![CDATA[lupus]]></category>
		<category><![CDATA[arthritis]]></category>
		<category><![CDATA[Insomnia]]></category>
		<category><![CDATA[Multitasking]]></category>
		<category><![CDATA[Muscle aches]]></category>

		<guid isPermaLink="false">http://lupinelife.com/?p=1137</guid>
		<description><![CDATA[I&#8217;m frequently guilty of trying to do it all. And before I felt the symptoms of lupus, I was often successful at it. Teaching while taking a heavy load of grad courses while student teaching? Sure! Why not? But I&#8217;m no longer able to take on quite as much; although, I try. But not without&#160;&#8230; <a href="http://lupinelife.com/2013/04/30/trying-to-do-it-all/">Read&#160;more</a><img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1137&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></description>
				<content:encoded><![CDATA[<p>I&#8217;m frequently guilty of trying to do it all. And before I felt the symptoms of lupus, I was often successful at it. Teaching while taking a heavy load of grad courses while student teaching? Sure! Why not? But I&#8217;m no longer able to take on quite as much; although, I try. But not without consequences.</p>
<p>Now my daily routine consists of caring for my four-month old son (which in and of itself requires multitasking), housekeeping, cooking and dishes, monitoring bills and the budget, occasional freelance copyediting work, and my latest feat: applying for a teaching position for the first time in about three years.</p>
<p>I keep reassuring myself that my to-dos are, in fact, doable. But as days and then weeks pass before I have an opportunity to clean the toilet (brush and cleaner standing by as a reminder), I scold myself for my apparent inability to get it together. So I skip my afternoon nap (taken while the  babe is blissfully snoozing), and I scrub the hell out of that toilet, and I feel very productive, and when I go to bed that night, I wonder why I can&#8217;t sleep.</p>
<p>Is it because my legs are aching? Is it because my hands are stiff and painful to sleep on? Is it because I&#8217;m overtired and have joined the legions of other lupus sufferers out there who also battle insomnia? Yes.</p>
<p>My body is telling me I can&#8217;t do it all. But I tell myself that&#8217;s a lie. My body is lying to me, and to prove it I&#8217;ll do it all again and again until I bring on a really good flare and show my body just what it means to not be able to do it all. I won&#8217;t be able to do anything at all.</p>
<p>This is ludicrous, of course. So I napped for about 20 minutes today before being woken up by aching leg muscles and stiff hands. So here I am, doing yet another task (albeit one I enjoy) that is often postponed indefinitely: writing this blog post. I&#8217;ll try to do fewer things on my to-do list tomorrow and take a nap and repeat this until my body stops telling me I&#8217;ve done too much.</p>
<p>The month of May is Lupus Awareness Month. As a part of that, I&#8217;m forcing myself to stop trying to do everything and become more aware of what my body needs. My to-do list needs to include slowing my pace so that I can finish the race without dragging my ass to the finish line.</p>
<br />Filed under: <a href='http://lupinelife.com/category/lupus/'>lupus</a> Tagged: <a href='http://lupinelife.com/tag/arthritis/'>arthritis</a>, <a href='http://lupinelife.com/tag/insomnia/'>Insomnia</a>, <a href='http://lupinelife.com/tag/lupus/'>lupus</a>, <a href='http://lupinelife.com/tag/multitasking/'>Multitasking</a>, <a href='http://lupinelife.com/tag/muscle-aches/'>Muscle aches</a> <a rel="nofollow" href="http://feeds.wordpress.com/1.0/gocomments/lupinelifedotcom.wordpress.com/1137/"><img alt="" border="0" src="http://feeds.wordpress.com/1.0/comments/lupinelifedotcom.wordpress.com/1137/" /></a> <img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1137&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></content:encoded>
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		<title>My New Life As an Old-School Mom</title>
		<link>http://lupinelife.com/2013/04/06/my-new-life-as-an-old-school-mom/</link>
		<comments>http://lupinelife.com/2013/04/06/my-new-life-as-an-old-school-mom/#comments</comments>
		<pubDate>Sat, 06 Apr 2013 16:00:35 +0000</pubDate>
		<dc:creator>lupinelife</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[Career]]></category>
		<category><![CDATA[family]]></category>
		<category><![CDATA[Housewife]]></category>
		<category><![CDATA[Mother]]></category>
		<category><![CDATA[Parent]]></category>
		<category><![CDATA[Stay at Home Mothers]]></category>

		<guid isPermaLink="false">http://lupinelife.com/?p=1130</guid>
		<description><![CDATA[Let me tell you briefly who I used to be. I used to be independent, stubborn, unafraid of ruffling feathers and challenging norms, college educated, in love with insane heels and classic literature, a writer of poetry and children&#8217;s stories, and a professional copyeditor. Let me tell you who I am now that I&#8217;ve had&#160;&#8230; <a href="http://lupinelife.com/2013/04/06/my-new-life-as-an-old-school-mom/">Read&#160;more</a><img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1130&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></description>
				<content:encoded><![CDATA[<p>Let me tell you briefly who I used to be. I used to be independent, stubborn, unafraid of ruffling feathers and challenging norms, college educated, in love with insane heels and classic literature, a writer of poetry and children&#8217;s stories, and a professional copyeditor.</p>
<p>Let me tell you who I am now that I&#8217;ve had a baby. I&#8217;m a stay-at-home mom.</p>
<p>Why such a short description? Is it because I have become that one dimensional? Actually, it&#8217;s because no one hears or notices the other aspects of my life. The truth is that nothing else has really changed from my former life, except that I often wear sneakers in favor of heels now, and I only work sporadically as a freelance copyeditor.</p>
<p>But people&#8217;s perception of me certainly has changed. And since my husband has started a new job where his co-workers know me only as a stay-at-home mom, they seem at a loss for conversation beyond things baby-related whenever I attend a work function. I get the feeling that they believe I am less educated than them and perhaps a little lazy in my occupation as a stay-at-home mom.</p>
<p>I laughed (and almost cried a little) when an episode of Modern Family explored blonde wifey&#8217;s frustrations with being a college-educated stay-at-home mom. Her frustration manifested in strange, hilarious, and pathetic ways. I saw my future, and it freaked me out. How do I balance my desire to be at home with my baby while he&#8217;s very young with my desire to produce (in the career sense of the word)?</p>
<p>I&#8217;m not the first woman to ask this question. But as far as I know, no one has come up with an answer. Shit. I guess that means I&#8217;ll continue to muddle my way throught this odd phase of my life and hope that my resume doesn&#8217;t become irrelevant.</p>
<p>I have to ask myself: What do I really want out of all of this? I want to care for my son during his most formative years, mostly with the hope that he&#8217;ll be better prepared for school, but also partly with the hope that he and I will bond over museum trips, long days at the zoo, and thrilling trips to the library.</p>
<p>And then I want to return to my career.</p>
<p>Ah, there&#8217;s the rub. This is the part that stops most moms in their tracks. This is the reckoning. I read an article on the topic that asserts that feminists of my mother&#8217;s generation firmly believe women can have it all; you just have to work hard enough to get it. But feminists of my generation, the author argues, have seen the failure of this approach and have instead resigned themselves to the understanding that women can&#8217;t have it all, not when our society&#8217;s not set up to accommodate mothers who work. We can either work and sacrifice family or stay home and sacrifice work.</p>
<p>For me, the choice hasn&#8217;t been easy. I&#8217;m lucky enough because I have a choice. And I feel good about staying home with my son and giving him a solid foundation for his future, but I also feel anxious about my own future. So I guess a Modern Family-type meltdown is inevitable. Shit.</p>
<br />Filed under: <a href='http://lupinelife.com/category/uncategorized/'>Uncategorized</a> Tagged: <a href='http://lupinelife.com/tag/career/'>Career</a>, <a href='http://lupinelife.com/tag/family/'>family</a>, <a href='http://lupinelife.com/tag/housewife/'>Housewife</a>, <a href='http://lupinelife.com/tag/mother/'>Mother</a>, <a href='http://lupinelife.com/tag/parent/'>Parent</a>, <a href='http://lupinelife.com/tag/stay-at-home-mothers/'>Stay at Home Mothers</a> <a rel="nofollow" href="http://feeds.wordpress.com/1.0/gocomments/lupinelifedotcom.wordpress.com/1130/"><img alt="" border="0" src="http://feeds.wordpress.com/1.0/comments/lupinelifedotcom.wordpress.com/1130/" /></a> <img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1130&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></content:encoded>
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			<media:title type="html">stay at home mom</media:title>
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		<title>Does Twitter Impact Your Health?</title>
		<link>http://lupinelife.com/2013/03/21/twitter_impacts_your_health/</link>
		<comments>http://lupinelife.com/2013/03/21/twitter_impacts_your_health/#comments</comments>
		<pubDate>Thu, 21 Mar 2013 23:03:29 +0000</pubDate>
		<dc:creator>lupinelife</dc:creator>
				<category><![CDATA[lupus]]></category>
		<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[Chronic pain]]></category>
		<category><![CDATA[Health]]></category>
		<category><![CDATA[Online Communities]]></category>
		<category><![CDATA[Social media]]></category>
		<category><![CDATA[twitter]]></category>

		<guid isPermaLink="false">http://lupinelife.com/?p=1121</guid>
		<description><![CDATA[The other day as I was reading through a long queue of tweets, I noticed an overwhelmingly negative tone in all of them. From mundane complaints about feeling frustrated with loved ones to more serious complaints about feeling fed up with chronic pain, everyone seemed to be on a downhill slide. What was interesting was&#160;&#8230; <a href="http://lupinelife.com/2013/03/21/twitter_impacts_your_health/">Read&#160;more</a><img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1121&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></description>
				<content:encoded><![CDATA[<p>The other day as I was reading through a long queue of tweets, I noticed an overwhelmingly negative tone in all of them. From mundane complaints about feeling frustrated with loved ones to more serious complaints about feeling fed up with chronic pain, everyone seemed to be on a downhill slide.</p>
<p>What was interesting was that I could pinpoint the exact moment when this slide began.</p>
<p>There was a specific moment when the tweets changed from jokes, encouragement, and enthusiastic reports of community involvement to anger, frustration, and talks of suicide.</p>
<p>By the end of the week, I was feeling exhausted, stiff, and mildly depressed and anxious. I wondered where all of this had come from. After all, I&#8217;d been symptom free for almost a year and feeling positive about life!</p>
<p>Then the Twitter tide of despair receded and people began tweeting messages of hope once again. Suddenly, I felt better. I felt lighter, energetic, happy, and my symptoms seemed to fade away. And this seemed to be happening to everyone. My experience doesn&#8217;t exactly add up to a scientific experiment, but it made me wonder: What if being inundated with dozens, if not hundreds, of negative messages impacts your health and your outlook on life?</p>
<p>It&#8217;s a good reminder for me to stay positive and put positive energy into the universe&#8211;smile and the whole world smiles with you, right?</p>
<br />Filed under: <a href='http://lupinelife.com/category/lupus/'>lupus</a>, <a href='http://lupinelife.com/category/uncategorized/'>Uncategorized</a> Tagged: <a href='http://lupinelife.com/tag/chronic-pain/'>Chronic pain</a>, <a href='http://lupinelife.com/tag/health/'>Health</a>, <a href='http://lupinelife.com/tag/lupus/'>lupus</a>, <a href='http://lupinelife.com/tag/online-communities/'>Online Communities</a>, <a href='http://lupinelife.com/tag/social-media/'>Social media</a>, <a href='http://lupinelife.com/tag/twitter/'>twitter</a> <a rel="nofollow" href="http://feeds.wordpress.com/1.0/gocomments/lupinelifedotcom.wordpress.com/1121/"><img alt="" border="0" src="http://feeds.wordpress.com/1.0/comments/lupinelifedotcom.wordpress.com/1121/" /></a> <img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1121&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></content:encoded>
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			<media:title type="html">twitter</media:title>
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		<title>Life in the NICU</title>
		<link>http://lupinelife.com/2013/02/27/life-in-the-nicu/</link>
		<comments>http://lupinelife.com/2013/02/27/life-in-the-nicu/#comments</comments>
		<pubDate>Wed, 27 Feb 2013 18:50:40 +0000</pubDate>
		<dc:creator>lupinelife</dc:creator>
				<category><![CDATA[lupus]]></category>
		<category><![CDATA[pregnancy]]></category>
		<category><![CDATA[Breastfeeding]]></category>
		<category><![CDATA[childbirth experience]]></category>
		<category><![CDATA[emergency c section]]></category>
		<category><![CDATA[Labor and Delivery]]></category>
		<category><![CDATA[Neonatal Intensive Care Unit]]></category>

		<guid isPermaLink="false">http://lupinelife.com/?p=1111</guid>
		<description><![CDATA[I&#8217;ve put off writing about my childbirth experience in part because I don&#8217;t like thinking about it, and also in part because I feel guilty for feeling traumatized when there are so many other parents out there who&#8217;ve experienced real trauma. But if I postpone this topic any longer, I&#8217;ll be so far removed from&#160;&#8230; <a href="http://lupinelife.com/2013/02/27/life-in-the-nicu/">Read&#160;more</a><img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1111&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></description>
				<content:encoded><![CDATA[<p>I&#8217;ve put off writing about my childbirth experience in part because I don&#8217;t like thinking about it, and also in part because I feel guilty for feeling traumatized when there are so many other parents out there who&#8217;ve experienced real trauma. But if I postpone this topic any longer, I&#8217;ll be so far removed from it that it will hardly be relevant. So here goes nothing&#8230;</p>
<p>I had a birth plan. Nothing went according to plan. But this wasn&#8217;t because everything went wrong; I just didn&#8217;t bother to follow it or share it with anyone once I went into labor. Not my specially purchased nightgown, not my book of sudoku puzzles&#8211;hell, I didn&#8217;t even bother to pull my hair back into a ponytail. None of it mattered once the contractions began.</p>
<p>And that was fine with me. I didn&#8217;t care that the plan I had painstakingly *ahem* <em>labored</em> over was completely disregarded. But towards the end of the big show, my contractions weren&#8217;t becoming more frequent. Consequently, my baby was becoming distressed, trapped midway between his happy home of nine months and the outside world. The doctor warned me that if I couldn&#8217;t push him out on my own, they&#8217;d have to do an emergency <a class="zem_slink" title="Caesarean section" href="http://en.wikipedia.org/wiki/Caesarean_section" target="_blank" rel="wikipedia">c-section</a>.</p>
<p>Then my temperature spiked. The doctor suspected I had an infection that would need to be treated with antibiotics as soon as possible, which meant my baby would also need to be treated. A team of nurses from the <a class="zem_slink" title="Neonatal intensive care unit" href="http://en.wikipedia.org/wiki/Neonatal_intensive_care_unit" target="_blank" rel="wikipedia">Neonatal Intensive Care Unit</a> (NICU) arrived with a portable heated bassinet, just in case they needed to whisk away my baby to the NICU. By sheer willpower, I pushed my baby out without the aid of contractions and with some assistance of a vacuum. No c-section for me, thanks!</p>
<p>Covered in goo just like in the movies, but mine all mine, my son arrived safe and sound. He had a good, strong cry. My husband held my hand tightly and cried tears of joy.  The doctor immediately handed him to a NICU nurse. I asked her if I could hold my baby. She looked at me and said sternly, No. A moment later, I asked her if I could breastfeed him. No. Then she brought him to the portable bassinet. A team of nurses worked frantically, cleaning him, taking his temperature, and assessing his overall health. I couldn&#8217;t see him past the nurses&#8217; bodies, and my husband looked worried. I called out to my baby through the wall of nurses, welcoming him with sweet words, and he turned his head toward me.</p>
<p>Finally, they finished their assessment and prepared to leave. From across the room, one of the nurses flatly informed me that his temperature was slightly elevated, probably due to an infection I&#8217;d acquired during labor. Therefore, he was being taken to the NICU. I wouldn&#8217;t see him for three to seven days.</p>
<p>Stunned, shocked, numb&#8211;there are no adjectives that accurately describe how I felt at that moment. His <a class="zem_slink" title="Apgar score" href="http://en.wikipedia.org/wiki/Apgar_score" target="_blank" rel="wikipedia">APGAR scores</a> were high. He weighed a very healthy 8 pounds, 11 ounces. Yet the nurse was telling me that my son was being taken away. Someone must&#8217;ve said something to someone because one of the nurses handed him to me, bundled and silent, so that we could have a quick family photo. It was a bittersweet moment caught on film. And then I had to give him back.</p>
<p>The nurses bustled out with my son, and my husband followed. The doctor left as well, and the techs made quick work of the room, leaving moments later. Then it was just me in the room. It was strangely silent after all of the activity that came before. I sat there in the bed I delivered my baby in, and I wondered if I&#8217;d had  a baby at all. Had I been dreaming? About ten minutes later, my husband returned, looking exhausted and worried. I cried.</p>
<p>A labor and delivery nurse entered the room and asked us what had happened. After we told her, she said &#8220;that just isn&#8217;t right.&#8221; Then she told us she would find a way for me to see my baby, even if it meant she got fired. She delivered on her promise. I don&#8217;t think she lost her job.</p>
<p>My son wound up staying in the NICU for one week so that they could administer antibiotics to him through an IV. Our fevers were gone by the end of the first day, but there we were: my healthy, full-term son surrounded by unfortunate babies born months too soon, and I in the recovery room with an empty rocking chair and the muffled sounds of mothers comforting their babies in the rooms next to mine.</p>
<p>My husband and I spent our waking hours in the NICU; although, we were only allowed to hold him during designated &#8220;cuddle times&#8221;&#8211;a euphemism for feeding times. In other words, we could hold him only to feed him (every three hours), and we were given 30 minutes to feed him, a time limit that was strictly enforced. I struggled to breastfeed him both because I only had 20 minutes each time to attempt this new trick before they made me give him formula, and because they&#8217;d gotten him hooked on bottle feedings. It wasn&#8217;t until the third day when I was discharged from the hospital that a lactation specialist bothered telling me I needed to pump if I wanted to make any milk and how to use the machine.</p>
<p>Determined to breastfeed, I began pumping around the clock and bringing my milk to the NICU for the nurses to feed my son instead of formula. I continued to try to breastfeed while in the NICU, but the nurses aggressively enforced the feeding time limits. One of them even went so far as to threaten me when I complained about having my breastfeeding interrupted so that I could then feed my son 30 mLs of formula: &#8220;If he continues to lose weight, the doctor will keep him here longer.&#8221; My son had indeed lost weight&#8211;a completely normal part of breastfeeding as the actual milk comes in, replacing the small amount of colostrum that comes in first. When I asked her why weight loss was normal in healthy, full-term babies, but not for my nearly nine-pound son, she didn&#8217;t answer and simply stalked off.</p>
<p>And that moment really sums up the problem: the NICU nurses didn&#8217;t know how to care for a healthy baby. They were incapable of working in a grey area and became defensive and even aggressive whenever their modus operandi was challenged.</p>
<p>My son is home now and napping in my arms&#8211;I hardly ever put him down. When we sent out the birth announcement, it had the following message printed on it: &#8220;In our hearts he was already ours, we just needed to bring him home.&#8221;</p>
<br />Filed under: <a href='http://lupinelife.com/category/lupus/'>lupus</a>, <a href='http://lupinelife.com/category/pregnancy-2/'>pregnancy</a> Tagged: <a href='http://lupinelife.com/tag/breastfeeding/'>Breastfeeding</a>, <a href='http://lupinelife.com/tag/childbirth-experience/'>childbirth experience</a>, <a href='http://lupinelife.com/tag/emergency-c-section/'>emergency c section</a>, <a href='http://lupinelife.com/tag/labor-and-delivery/'>Labor and Delivery</a>, <a href='http://lupinelife.com/tag/neonatal-intensive-care-unit/'>Neonatal Intensive Care Unit</a> <a rel="nofollow" href="http://feeds.wordpress.com/1.0/gocomments/lupinelifedotcom.wordpress.com/1111/"><img alt="" border="0" src="http://feeds.wordpress.com/1.0/comments/lupinelifedotcom.wordpress.com/1111/" /></a> <img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1111&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></content:encoded>
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		<title>The Non-Compliant Patient</title>
		<link>http://lupinelife.com/2013/02/19/the-non-compliant-patient/</link>
		<comments>http://lupinelife.com/2013/02/19/the-non-compliant-patient/#comments</comments>
		<pubDate>Tue, 19 Feb 2013 21:21:33 +0000</pubDate>
		<dc:creator>lupinelife</dc:creator>
				<category><![CDATA[lupus]]></category>
		<category><![CDATA[Health care]]></category>
		<category><![CDATA[Medical record]]></category>
		<category><![CDATA[Medicine]]></category>
		<category><![CDATA[Non-compliance]]></category>
		<category><![CDATA[Patient]]></category>
		<category><![CDATA[Patient advocate]]></category>

		<guid isPermaLink="false">http://lupinelife.com/?p=1055</guid>
		<description><![CDATA[Since getting a new rheumatologist in July, I feel as though I&#8217;ve been engaging in a polite battle of wits&#8211;or will&#8211;with him and his office staff. His staff said he required my medical records from my previous rheumy in order to accept me as a new patient. So I did as I was told. Later,&#160;&#8230; <a href="http://lupinelife.com/2013/02/19/the-non-compliant-patient/">Read&#160;more</a><img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1055&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></description>
				<content:encoded><![CDATA[<p>Since getting a new rheumatologist in July, I feel as though I&#8217;ve been engaging in a polite battle of wits&#8211;or will&#8211;with him and his office staff. His staff said he required my medical records from my previous rheumy in order to accept me as a new patient. So I did as I was told.</p>
<p>Later, when I finally had my first appointment, he asked me when I&#8217;d last seen an eye doctor (I have my eyes checked annually for possible damage caused by taking <a class="zem_slink" title="Hydroxychloroquine" href="http://en.wikipedia.org/wiki/Hydroxychloroquine" target="_blank" rel="wikipedia">Plaquenil</a>). Heck if I know&#8230; Isn&#8217;t that why I had my records sent to your office? Alas, you didn&#8217;t review them. I was mildly annoyed, but I was ready to forgive my doctor&#8217;s laziness and move forward.</p>
<p>Oh ho! But wait, rather than checking my records, he refused to write a 90-day prescription for Plaquenil until I saw an eye doc. Fine, so I took a 30-day prescription in the meantime and waited to receive a referral in the mail for the eye doc. The referral never came. My medication was running low and I was getting very pregnant and less mobile. I got another 30-day supply. Then I forgot all about the referral and got completely absorbed in preparing for the baby. I refilled my prescription again for 30 days&#8217; worth, using up the last of my refills. Then I had my baby.</p>
<p>One day my phone reminded me that I had an appointment with the doc. Since we weren&#8217;t sure if delivering a baby would bring on a lupus flare, the appointment had been made tentatively before I gave birth. But as I had been in the months before and during my pregnancy, I was symptom free! With three weeks of meds left, I called his office to cancel my appointment. The woman I spoke with wasn&#8217;t pleased. <strong>She grilled me, treating me as though I was being a non-compliant patient</strong>. I dropped the niceties (she started it) and told her that if the doc couldn&#8217;t give me a compelling reason to see him now, I wouldn&#8217;t reschedule until my annual visit was due. Then I asked about getting a referral to an eye doc and a new 90-day prescription (it saves money and can be mailed directly to my home). The woman said I didn&#8217;t need a referral (really?) and would send a message to the doc. Two weeks later, I still hadn&#8217;t heard back.</p>
<p>Out of frustration, I called my general practitioner and got another 30-day prescription, no refills. Meanwhile, I found a reminder in my calendar to make my annual eye doc appointment&#8211;in February.</p>
<p>If my rheumy had only looked at my records in the first place, we could&#8217;ve avoided wasting <em>my</em> money on short-term prescriptions. If he and his office staff hadn&#8217;t treated me like a non-compliant patient when I refused to waste more money by going to an appointment that wasn&#8217;t medically necessary, perhaps I wouldn&#8217;t be angrily typing these words.</p>
<p>My mother, an RN for nearly 30 years, once told me:</p>
<blockquote><address>&#8220;You are your own greatest (patient) advocate.&#8221; </address>
</blockquote>
<p>Her words are true, but that doesn&#8217;t mean the medical establishment will play nicely with those who choose to follow this adage. So in this case, am I being a patient advocate or a non-compliant patient?</p>
<br />Filed under: <a href='http://lupinelife.com/category/lupus/'>lupus</a> Tagged: <a href='http://lupinelife.com/tag/health-care/'>Health care</a>, <a href='http://lupinelife.com/tag/lupus/'>lupus</a>, <a href='http://lupinelife.com/tag/medical-record/'>Medical record</a>, <a href='http://lupinelife.com/tag/medicine/'>Medicine</a>, <a href='http://lupinelife.com/tag/non-compliance/'>Non-compliance</a>, <a href='http://lupinelife.com/tag/patient/'>Patient</a>, <a href='http://lupinelife.com/tag/patient-advocate/'>Patient advocate</a> <a rel="nofollow" href="http://feeds.wordpress.com/1.0/gocomments/lupinelifedotcom.wordpress.com/1055/"><img alt="" border="0" src="http://feeds.wordpress.com/1.0/comments/lupinelifedotcom.wordpress.com/1055/" /></a> <img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1055&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></content:encoded>
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		<title>The Most Hated People on Planes</title>
		<link>http://lupinelife.com/2013/02/06/the-most-hated-people-on-planes/</link>
		<comments>http://lupinelife.com/2013/02/06/the-most-hated-people-on-planes/#comments</comments>
		<pubDate>Wed, 06 Feb 2013 22:00:49 +0000</pubDate>
		<dc:creator>lupinelife</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[Children]]></category>
		<category><![CDATA[Crying]]></category>
		<category><![CDATA[Flying]]></category>
		<category><![CDATA[Infant]]></category>
		<category><![CDATA[Passenger]]></category>
		<category><![CDATA[Travel]]></category>

		<guid isPermaLink="false">http://lupinelife.com/?p=1053</guid>
		<description><![CDATA[If you&#8217;ve ever flown before, you&#8217;re probably aware of at least a few different types of hated passengers. There&#8217;s the guy with (apparently) elephantitis of the junk, who must sit with his legs as far apart as possible. Similarly, there&#8217;s the Monarch, who must use the armrests on both sides to rest their mighty elbows.&#160;&#8230; <a href="http://lupinelife.com/2013/02/06/the-most-hated-people-on-planes/">Read&#160;more</a><img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1053&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></description>
				<content:encoded><![CDATA[<p>If you&#8217;ve ever flown before, you&#8217;re probably aware of at least a few different types of hated passengers. There&#8217;s the guy with (apparently) <strong>elephantitis of the junk</strong>, who must sit with his legs as far apart as possible. Similarly, there&#8217;s <strong>the Monarch</strong>, who must use the armrests on both sides to rest their mighty elbows. What flight is complete without <strong>the Drunk</strong>, who has consumed three double bloody marys at the airport bar and is keeping the party going inflight. But possibly the most hated people on planes are <strong>families</strong>; specifically, couples with babies.</p>
<p>Everybody loves babies, unless they&#8217;re about to board a plane with them. What is it about babies that suddenly makes them anathema to fellow travelers? Two words: Recirculated Air. When babies aren&#8217;t cooing and drooling and being all around adorable, they&#8217;re pooping. And being trapped in a plane that&#8217;s recirculating stale poopy smells brought to you by the baby in the front row is sure to rile up the masses. Speaking of being trapped in a plane, the other thing babies are great at is crying. Combine that penchant with changing cabin pressure, and you&#8217;ve got magic. If by &#8220;magic&#8221; you mean being stuck with a screaming baby for hours.</p>
<p>In March, my husband and I will embark on our very first flight with our baby. And since there&#8217;s a reason baby books don&#8217;t include baby&#8217;s first flight, we are nervous about the dirty looks we&#8217;ll probably receive from the other passengers. He&#8217;ll be three months old by then, and we have no idea how to travel with him.</p>
<p>There&#8217;s the couple who brought bags of candy for all of the passengers with a note that apologized for their baby (or babies&#8230; they may have had twins). But I don&#8217;t believe parents should apologize for their babies being babies. I don&#8217;t care for the sound of babies crying or the smell of babies pooping, but I certainly never shot dirty looks at the parents or expected an apology.</p>
<p>So I guess this is a friendly warning: Here we come! Baby and all&#8230; And as for any smells that may occur, <em>bon appetit</em>!</p>
<br />Filed under: <a href='http://lupinelife.com/category/uncategorized/'>Uncategorized</a> Tagged: <a href='http://lupinelife.com/tag/children/'>Children</a>, <a href='http://lupinelife.com/tag/crying/'>Crying</a>, <a href='http://lupinelife.com/tag/flying/'>Flying</a>, <a href='http://lupinelife.com/tag/infant/'>Infant</a>, <a href='http://lupinelife.com/tag/passenger/'>Passenger</a>, <a href='http://lupinelife.com/tag/travel/'>Travel</a> <a rel="nofollow" href="http://feeds.wordpress.com/1.0/gocomments/lupinelifedotcom.wordpress.com/1053/"><img alt="" border="0" src="http://feeds.wordpress.com/1.0/comments/lupinelifedotcom.wordpress.com/1053/" /></a> <img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=lupinelife.com&#038;blog=19774378&#038;post=1053&#038;subd=lupinelifedotcom&#038;ref=&#038;feed=1" width="1" height="1" />]]></content:encoded>
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