<?xml version="1.0" encoding="UTF-8"?>
<rss version="2.0"
	xmlns:content="http://purl.org/rss/1.0/modules/content/"
	xmlns:wfw="http://wellformedweb.org/CommentAPI/"
	xmlns:dc="http://purl.org/dc/elements/1.1/"
	xmlns:atom="http://www.w3.org/2005/Atom"
	xmlns:sy="http://purl.org/rss/1.0/modules/syndication/"
	xmlns:slash="http://purl.org/rss/1.0/modules/slash/"
	>

<channel>
	<title>Perches in the Soul &#187; Patient-ness</title>
	<atom:link href="http://perchesinthesoul.com/category/patient-ness/feed/" rel="self" type="application/rss+xml" />
	<link>http://perchesinthesoul.com</link>
	<description></description>
	<lastBuildDate>Sat, 28 Aug 2010 19:07:55 +0000</lastBuildDate>
	<language>en</language>
	<sy:updatePeriod>hourly</sy:updatePeriod>
	<sy:updateFrequency>1</sy:updateFrequency>
	<generator>http://wordpress.org/?v=3.0.1</generator>
		<item>
		<title>Through the veil&#8230;..</title>
		<link>http://perchesinthesoul.com/2010/08/28/through-the-veil/</link>
		<comments>http://perchesinthesoul.com/2010/08/28/through-the-veil/#comments</comments>
		<pubDate>Sat, 28 Aug 2010 19:07:55 +0000</pubDate>
		<dc:creator>Amy</dc:creator>
				<category><![CDATA[Children]]></category>
		<category><![CDATA[Disability Stuff]]></category>
		<category><![CDATA[Patient-ness]]></category>
		<category><![CDATA[Residency]]></category>

		<guid isPermaLink="false">http://perchesinthesoul.com/?p=467</guid>
		<description><![CDATA[When you think about a sick child&#8230;what kind of images flow through your mind??  Probably unhappy ones.  Children should not suffer. Its one of the rules of the universe&#8230;.all religions seem to agree on it&#8230;.all moral codes&#8230;the innocent should not suffer. But kids get sick and they do suffer. its reality. call it the fall. [...]]]></description>
			<content:encoded><![CDATA[<p>When you think about a sick child&#8230;what kind of images flow through your mind??  Probably unhappy ones.  Children should not suffer. Its one of the rules of the universe&#8230;.all religions seem to agree on it&#8230;.all moral codes&#8230;the innocent should not suffer.</p>
<p>But kids get sick and they do suffer.</p>
<p>its reality. call it the fall. call it evil. call it the facts of life.</p>
<p>kids suffer.</p>
<p>So what do we do with that information?  Well we try to alleviate their suffering&#8230;..what does alleviate mean?</p>
<p>11 yo with cystic fibrosis (bad, bad thick mucous slowly clogs your lungs and your pancreas making breathing, digestion and eventually sugar balance difficult).</p>
<p>CF is a bad disease and we require a lot from our patients to maintain their health.  Our patients are frequently in the hospital with lung infections.</p>
<p>What kind of allowances do we make for children who suffer?  Is it ok if they don&#8217;t always have to obey the rules?  What about doing their therapies?  Taking care of them selves?   Do we  not cause further suffering by just letting them get away with stuff?<br />
On the CF floor, we never make the kids do their Pulmonary function tests if they don&#8217;t want, we never make them control their blood sugar even if the have normal BMIs because they are CF kids so obviously they All are failure to thrive (MYTH!)!</p>
<p>Frankly it drives me to distraction.  Do you know what the increased mortality is from poorly controlled diabetes with CF&#8230;A DECADE. A DECADE of a life for a person with CF??? (thats with the average life span, 25% of their lives)</p>
<p>I realize sometimes we have to choose our battles but we also have to make sure  to help our patients fight theirs.  CF sucks. Being sick sucks.  Not being able to have a normal childhood sucks. Dying in childhood sucks more.</p>
<p>I don&#8217;t think we alleviate suffering by pitying the patient or pampering them. I don&#8217;t think we teach them self-advocacy and I don&#8217;t think we teach them to fight.  That doesn&#8217;t mean we should cram medicine down their throats or be cruel or legalistic about or force them to do anything. It just means we are honest with them  and that we encourage them not to think about how their life sucks because they are different but by giving the same expectations and grace we would give any child.  A sense of boundaries, a sense of security and encouragement.</p>
<p>Yes Children suffer.</p>
<p>But children suffer more when we don&#8217;t love then and treat them with the expectation that they matter enough to us that we will fight for them.</p>
<p>:::off soapbox::::</p>
]]></content:encoded>
			<wfw:commentRss>http://perchesinthesoul.com/2010/08/28/through-the-veil/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>for the love&#8230;</title>
		<link>http://perchesinthesoul.com/2010/07/14/for-the-love/</link>
		<comments>http://perchesinthesoul.com/2010/07/14/for-the-love/#comments</comments>
		<pubDate>Wed, 14 Jul 2010 22:24:00 +0000</pubDate>
		<dc:creator>Amy</dc:creator>
				<category><![CDATA[Children]]></category>
		<category><![CDATA[Patient-ness]]></category>
		<category><![CDATA[Residency]]></category>

		<guid isPermaLink="false">http://perchesinthesoul.com/?p=458</guid>
		<description><![CDATA[&#8220;Many things we need can wait. The child cannot. Now is the time his bones are formed, his mind developed. To him we cannot say tomorrow, his name is today.&#8221; — Gabriela Mistral I love my job. I love my job. I love my job. I had great intentions of writing an epic entry about [...]]]></description>
			<content:encoded><![CDATA[<div>
<p>&#8220;Many things we need can wait. The child  cannot. Now is the  time his bones are formed, his mind developed. To him  we cannot say  tomorrow, his name is today.&#8221;</p>
<p>— Gabriela Mistral</p>
</div>
<p>I love my job. I love my job. I love my job.</p>
<p>I had great intentions of writing an epic entry about how much I love my new surroundings and how challenged and encouraged I feel at my new program.</p>
<p>Then today happened.  And well.</p>
<p>I love my job. I love my job.</p>
<p>but some days it sucks.</p>
<p>5 mon old with a trach due to a cyst in his airway that she was born with.  She is beautiful, she smiles and tracks and loves people.</p>
<p>She lives in a neighborhood that happens to be rape capitol and most violent places in America. Its also one of the poorest.</p>
<p>For three weeks since I got here we have worked to get him, his pregnant, single, Mom who is younger than me HOME.</p>
<p>I have talked to her pediatrician, home health, social work, discharge planning, ENT, GI, God and Mom. I spent my first two weeks of internship loving and advocating for this little girl.  Because this is what I believe in. I believe that early intervention can work in the slums, I believe these kids are worth fighting for.</p>
<p>Today was D-DAY.</p>
<p>Home health called after rounds after I told Mom that today was the day.  They  did a reevaluation&#8230;.they won&#8217;t send anyone to THAT neighborhood anymore plus Mom is a social concern, did we know she was pregnant??? And single??? And uneducated???</p>
<p>Yes we knew and yes we are skeptical too. Thats why we spent four weeks teaching Mom to do trach care and tube feeds. She learned it all beautifully and yes she is poor but she is not stupid.</p>
<p>And the fact is, this is America. We don&#8217;t take kids away from their parents just because they are medically complicated.  I&#8217;ve been in a society like that and believe me while this situation isn&#8217;t ideal that one is a diaster and a moral travesty.  The thought of this beautiful baby who is cognitively a 110% been warehoused makes me sick.</p>
<p>Mom deserves a chance.  The baby deserves the chance at his blood family before being turned over to foster care.</p>
<p>After my attending and I begged home health, listened to the SW and the nurses bash Mom, home health, the universe and our team.  And getting no where for hours and hours.</p>
<p>I had to go tell Mom.   She told me that she knew we didn&#8217;t trust her especially the nurses&#8230;.and she thought I was lying because every day I come in and say he is going home and yet he never does.</p>
<p>An hour later I got another page and we went through it again.</p>
<p>And then I came home and crumpled</p>
<p>I love my job. I love my job.</p>
<p>because I love these children. I don&#8217;t care where they live, or what country they hail from or how much we think their situation is terrible.  Its not about that.</p>
<p>Its about the child.</p>
<p>A precious child who while I am telling her Mother and she is yelling at the me, at the situation (I would yell too).  She is just smiling at me as if to say I forgive you.  I forgive them.  I love you because you care even if you fail.</p>
<p>and i crumple in the light of her grace, of her wisdom.</p>
<p>I only wish that we could all just for a moment stop moving, stop screaming, stop writing paper work and filing medicaid and remember that in the end this is about that.</p>
<p>Its about the child&#8230;</p>
<div>and thats why even when it sucks. I will wake up at 5Am and go back to work for 30 straight hours tomorrow</div>
<div></div>
<div>Because I love her.  and every baby like her.</div>
]]></content:encoded>
			<wfw:commentRss>http://perchesinthesoul.com/2010/07/14/for-the-love/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>Cultural Obligations</title>
		<link>http://perchesinthesoul.com/2010/06/24/cultural-obligations/</link>
		<comments>http://perchesinthesoul.com/2010/06/24/cultural-obligations/#comments</comments>
		<pubDate>Thu, 24 Jun 2010 20:56:37 +0000</pubDate>
		<dc:creator>Amy</dc:creator>
				<category><![CDATA[Disability Stuff]]></category>
		<category><![CDATA[Patient-ness]]></category>
		<category><![CDATA[Residency]]></category>

		<guid isPermaLink="false">http://perchesinthesoul.com/?p=452</guid>
		<description><![CDATA[12 people are waiting for a bus. One is in a wheelchair. A green wheelchair. The wheelchair does not fit on the bus.   The girl in the wheelchair gets up and starts to fold up the chair. With her backpack on her back with the body under one arm and the wheels under the other [...]]]></description>
			<content:encoded><![CDATA[<p>12 people are waiting for a bus.</p>
<p>One is in a wheelchair. A green wheelchair.</p>
<p>The wheelchair does not fit on the bus.   The girl in the wheelchair gets up and starts to fold up the chair. With her backpack on her back with the body under one arm and the wheels under the other she is tittering as the bus arrives.  The other 11 people stare at her.</p>
<p>In their eyes they they tell their stories&#8230;.uncomfortable, guilty, annoyed, not making eye contact.</p>
<p>11 people rush by to get on the bus.</p>
<p>The girl is left lugging her chair slowly up the bus stairs.  Finally one person offers a hand.</p>
<p>The bus driver. (a middle aged, obese African American woman)</p>
<p>Then one of the people on the bus rushes forward almost too late to help at all.</p>
<p>The bus leaves. When it arrives at its destination. The bus driver picks up the chair and the wheels and places them on the sidewalk for the girl with a smile.</p>
<p>The 11 people look on, some gawking, some looking guilty, some walking quickly toward the building because if they are oblivious it didn&#8217;t happen on their watch.</p>
<p>The girl reassembles the chair and thanks the bus driver.</p>
<p>Then she follows the other 11.</p>
<p>The 12 bus riders.</p>
<p>There are the same age&#8230;..</p>
<p>&#8230;&#8230;they are the same soci-economic status&#8230;.</p>
<p>&#8230;&#8230;..most are white or Asian</p>
<p>They  have all have advanced degrees.</p>
<p>In fact they are all doctors.</p>
<p>Medical Doctors.</p>
<p>Pediatricians no less.</p>
<p>Is it because I live in the North now? Is it because I am professional now?  Or is because doctors are uncomfortable with the idea of disabled doctors?</p>
<p>or is it none of the above.</p>
<p>All I know is this never happened to me in NC. It happens to me every day here.  I get doors slammed in front of me, I have people take the stairs in front of me in a group even while I am saying the elevator is this way, people rarely talk socially to me if I am the chair so I push the chair so I can have conversations&#8230;..</p>
<p>Oddly the program here is much more supportive then the school in NC (see previous entry). Yet my colleagues there were much more accepting than my colleagues here.</p>
<p>What gets me is not the social persecution (because when I am with my new friends they are not like this&#8230;not everyone is like this just most of them) or even that my life is physically harder (I am ok with doing things myself&#8230;I get through it) its that these people are about to be released on my tribe.    Its fact that most of them walk on by completely ignoring me as if I don&#8217;t exist to them in the wheelchair.   What does that mean for their patients many of whom will be chronically ill, or disfigured or using assisted devices?</p>
<p>SO  do they only talk to disabled people or choose to be compassionate when they get paid for it?</p>
<p>No I don&#8217;t think its that.  I think its just that I mess up their concept of the doctor-patient sacred boundary.  And I mess with their comfort zones.  Gimps are supposed to be needy and sell pencils on street corners.</p>
<p>But then there is the bus driver&#8230;.why did she help when my peers, the doctors didn&#8217;t?</p>
<p>I don&#8217;t know her.  But I could make some guesses.  Although guesses are dangerous.  She doesn&#8217;t have our education or our privileges but perhaps she is better for it. Perhaps she knows something that most of my peers and most physicians will never understand even though they are up to their eyeballs in it.</p>
<p>Maybe she knows what its like to suffer or be different or know pain.  Not even necessarily in the physical ways I have known them.</p>
<p>Most doctors (by NO MEANS ALL) who grow up in the states and train in the states know very little of these things.</p>
<p>And in the end I think this is the problem. This is the cultural barrier. Its not my collagen genes or my flat face or my southern drawl.</p>
<p>Its what they don&#8217;t know that I do that is so terrifying.   Because believe me if there is anything that we doctors hate its to be one who doesn&#8217;t know whats going on.</p>
]]></content:encoded>
			<wfw:commentRss>http://perchesinthesoul.com/2010/06/24/cultural-obligations/feed/</wfw:commentRss>
		<slash:comments>1</slash:comments>
		</item>
		<item>
		<title>biazarre blizzard</title>
		<link>http://perchesinthesoul.com/2010/02/09/biazarre-blizzard/</link>
		<comments>http://perchesinthesoul.com/2010/02/09/biazarre-blizzard/#comments</comments>
		<pubDate>Wed, 10 Feb 2010 03:15:31 +0000</pubDate>
		<dc:creator>Amy</dc:creator>
				<category><![CDATA[Disability Stuff]]></category>
		<category><![CDATA[Medical School]]></category>
		<category><![CDATA[Patient-ness]]></category>

		<guid isPermaLink="false">http://perchesinthesoul.com/?p=410</guid>
		<description><![CDATA[I once had some one tell me I was a wounded healer. Someone who can heal because they have suffered. All through every interview, nearly every conversation about my double life as a patient-doctor someone always mentions that I must be some emphatic to my patients. I truly understand them.   I have always felt slightly [...]]]></description>
			<content:encoded><![CDATA[<p>I once had some one tell me I was a wounded healer. Someone who can heal because they have suffered. All through every interview, nearly every conversation about my double life as a patient-doctor someone always mentions that I must be some emphatic to my patients. I truly understand them.   I have always felt slightly unnerved by this. Despite the fact that I love talking and playing with disabled children (or really any child) and counseling their families.  I can say we have an understanding but I do not think I cannot say I can relate to how they experience their medical situation. Its personal, it really is.  Plus having Kniest is not like having childhood cancer or a heart defect or type one diabetes. Its unique.</p>
<p>But if I ever I was going to get it. If ever I was going to truly understand the insanity of all this, it would be now.  Today.  When I was 9 yrs old I could barely walk and I couldn&#8217;t stand up straight. My hips were contracted, my knees were knock knee-ed to the point that my back was swayback.  I had a massive surgery. I have written about it before. Three surgeries in one. I was in the PICU for four days, two units of blood, two weeks in the hospital and oddly a huge blizzard of 2-3 ft of snow. There are nights from that period that I can still recall in vivid detail down to the last blood draw. If  ever I was going to say I had a scarring medical experience it would have been that.</p>
<p>Today I met a friend who I have known for a long time virtually but never met. She is 8 and we could pass for sisters. Our childhood pictures at the same age look remarkably similar. Instead of going to the OR or really playing medical student I spent the day with her and Mom for her pre-op work up.  The pre-op work up was supposed to be my educational endeavor for the day but honestly I could have repeated the sequence with my eyes closed.  I mean I literally did this 6 times here alone.   We had a great time though playing, racing up the hallways, talking and getting to know and her Mom.  I knew watching her walk what was coming but I doubted my inexperienced instincts.</p>
<p>My instincts were right on,  we looked at her film, we examined her and the plan was set. Bilateral femoral osteomonies. My heart melted a bit for my young friend.  They talk about the post-op pain and epidurals and physical therapy and I just sat there and remembered it all as they glossed over it like it was somehow an every day event for one to have broken legs in three places and then try to move it less than 24 hours after the blessed trauma. I was so struck by how little they really knew..At one point the oddest thing was said, my young friend looked at my attending/our doctor/world famous physician who is the Chairmen here and said &#8220;But Amy has way more skills, right?&#8221;  I of course said NOOOOOooooooooo quite seirously. But I look back and think what did she mean by skills?   I  thought to myself how often do you have an almost physician in the room who can say I HAD THIS DONE.  Does that count for something?  If  I could go back to the night before my own procedure what would I have had told the younger me?</p>
<p>I have no idea and I had no idea as we sat there together side by side eating pizza, playing cards and chasing paper airplanes. After all this talk of empathy, wounded healing shenanigans I fail to see what my added superpower is.</p>
<p>I asked my young friend if she had any questions for me as her friend, as her fellow Kniestian, she told me &#8216;NO.&#8217;</p>
<p>and I thought to myself  she knows. I think we all know somehow. We all know that all we can do is just muddle through it. You can prepare for it but not really.</p>
<p>It is snowing with gusty winds just like it was 16 years ago.  I can&#8217;t get back to my house in Newark safely. SO I am stuck here among other hospital employees camping out here. I never thought I would spend another night here but here I am in scrubs on a cot in a classroom.</p>
<p>maybe that is the key. here I am.</p>
<p>maybe the added superpower is that I exist. maybe the healing is that fact I can stand up straight and tall in scrubs tomorrow and be at peace with my life, with an awareness and respect for my past wounds, with joy in the present of having the privilege to study under a truly great doctor and play a very small part in helping a dear friend and with great hope for the future of being able to live my dreams unhindered by my  physical wounds.</p>
<p>how many are blessed enough to have that sort of triple blessing?</p>
<p>Maybe that is what I would whisper to my tearstained, pain-stricken 9 yr old self shivering in the PICU if I could&#8230;.be still.</p>
<p>rest in the knowledge that this is only a blip in the master plan of your story.</p>
<p>if my young friend turns to me in my mask and blue scrubs tomorrow with fear or pain that is what I will whisper to her.</p>
]]></content:encoded>
			<wfw:commentRss>http://perchesinthesoul.com/2010/02/09/biazarre-blizzard/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>the neverending story&#8230;.</title>
		<link>http://perchesinthesoul.com/2009/11/23/the-neverending-story/</link>
		<comments>http://perchesinthesoul.com/2009/11/23/the-neverending-story/#comments</comments>
		<pubDate>Tue, 24 Nov 2009 02:15:35 +0000</pubDate>
		<dc:creator>Amy</dc:creator>
				<category><![CDATA[Patient-ness]]></category>

		<guid isPermaLink="false">http://perchesinthesoul.com/?p=397</guid>
		<description><![CDATA[The first few months of 1994 had an epicenter: March 31, 1994.  I was 9 and on Jan 14  of that year I had undergone bilateral femur, tibia osteomonies (translation: they cut and broke my legs in three places at the hip, knee and ankle and nailed it back together&#8230;.translation: legal form of human torture [...]]]></description>
			<content:encoded><![CDATA[<p>The first few months of 1994 had an epicenter: March 31, 1994.  I was 9 and on Jan 14  of that year I had undergone bilateral femur, tibia osteomonies (translation: they cut and broke my legs in three places at the hip, knee and ankle and nailed it back together&#8230;.translation: legal form of human torture in the name of pain relief&#8230;).</p>
<p>It snowed a blizzard the night of the 14th the snow drifts were higher than my sister&#8217;s head (she was 3). It was so cold that my parents, sisters and a giant Amish family kept been awoken in the night at the Ronaold McDonald House by frequent fire alarms. They would shuffle out in their PJs, coats and hats and wait for the Delaware fire department to arrive and try not to gawk at Amish nightgowns and winter coats.</p>
<p>Meanwhile I was awoken as well&#8230;. in the PICU with hives in a body cast. They thought it was my epidural so they took that out in the middle of the night while the blizzard winds whirled outside.  The Anesthesia resident got woken up four times before they did it&#8230;poor guy.   My Grandfather (ever the Top Gun) flew in late that evening somehow to Dover AFB and surprised us all.  I have been told it didn&#8217;t happen like this but I remember him walking into the ICU room in his US Navy black and gold winter coat (they swear he was in civilian clothes but my morphine drugged mind remembers this)  .    My grandfather and Dad took the night watches so my grandmother and Mom could sleep and take care of the little girls.  (which turned out to be a snow drill with the Amish times three).</p>
<p>My Dad sang Kum-by-ya to me in the wee hours of the morning once the epidural morphine began to fade and six new fractures and numerous nails started to throb&#8230;</p>
<p>and that was just the first night of a 14 day hospital stay. and the first night that I counted the days till March 31.</p>
<p>That the day the body cast came off. I counted the days the whole 10 weeks. We drove up there, they took me to the cast room and sawed me out in about an hour.   My legs were scaly, hairy and now dotted with fresh scars. I had not sat up in ten weeks. To transport me to x-ray they needed to transfer to the wheelchair from the high cast table. They picked me up gently but gravity failed me&#8230;I screamed as I came to an almost sitting position in mid-air. My body seared with pain at a position it knew no more.</p>
<p>Turned out the bones still had not healed.  i was not ready for freedom. they hollowed out my cast and made it into a splint which I went home in.  I was devastated.  March 31 turned out to be a terrible disappointment.</p>
<p>Nov 23, 2009.  10 weeks after  total hip replacement (translation: they cut out the top of my thigh bone and jammed a large piece of plastic into the rest of my thigh bone and into my hip socket&#8230;translation: more human torture in the name of pain relief).  10 weeks ago I discovered Nov 23 was the end of  the dreaded  hip precautions.  disappointing yet again. I can&#8217;t touch my toes&#8230;heck I can barely touch my knees. My hips are tight and resistant to the idea that they should now go back to doing what they did 10 weeks ago and more.  My therapist doubled my stretching in honor of the occasion. I came home soaked in a tub for an hour and still feel like my hip flexors are made of cement.</p>
<p>you would think i would learn to expect less&#8230;to expect no miracles but rather that all freedom especially orthopedic freedom is not free.  (if only the surgeons understood this).</p>
<p>yet again disappointing. really these surgeons  for all their confidence are more trouble than they are worth at times.</p>
]]></content:encoded>
			<wfw:commentRss>http://perchesinthesoul.com/2009/11/23/the-neverending-story/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>the uglies</title>
		<link>http://perchesinthesoul.com/2009/11/16/the-uglies/</link>
		<comments>http://perchesinthesoul.com/2009/11/16/the-uglies/#comments</comments>
		<pubDate>Tue, 17 Nov 2009 01:36:04 +0000</pubDate>
		<dc:creator>Amy</dc:creator>
				<category><![CDATA[Disability Stuff]]></category>
		<category><![CDATA[Medical School]]></category>
		<category><![CDATA[Patient-ness]]></category>
		<category><![CDATA[The Future]]></category>

		<guid isPermaLink="false">http://perchesinthesoul.com/?p=391</guid>
		<description><![CDATA[everyone seems to like listening to my life stories. the little gimpy kid with the disease no one has ever heard of growing up and becoming a doctor has a nice ring to it.  the stuff on my resume makes me look smart, sane, mature. but in reality most of it is a facade. none [...]]]></description>
			<content:encoded><![CDATA[<p>everyone seems to like listening to my life stories. the little gimpy kid with the disease no one has ever heard of growing up and becoming a doctor has a nice ring to it.  the stuff on my resume makes me look smart, sane, mature.</p>
<p>but in reality most of it is a facade. none of it is untrue but putting it all in bullet points on a sheet of paper cuts out all the details.  no body likes the details.</p>
<p>the details are ugly. everyone wants to know how my surgery went. but everyone wants me to say it went great. everyone wants to know what being a disable medical student is like but everyone wants me to say its been swell.</p>
<p>I just had a surgery that was basically palliative care. it didn&#8217;t cure my disease it kept me from pulling my hair out because I can&#8217;t sit still because of the the pain. but the truth is yeah the actual four hours of the surgery went well but physical therapy is a bit of a disaster.  i have what appears to be a three to five year old flexion contracture that is not only tough as nails but if it doesn&#8217;t get better is going to wear the prosthesis down much faster than usual (which basically knocks off years of walking).  No one diagnosed this crucial fact&#8230;one has to wonder what role it played in the hip pain the first place. no one wants to hear from the little medical student that her transition from pediatric to adult medicine has been fraught with peril, that the adult orthopods are not only ignorant about her pediatric disease but too arrogant to admit it.  I suffer for it not them.</p>
<p>I am getting up at 5 AM, rounding on patients I do not know half the time, writing notes either observing (as in not touching) in the OR or occasionally interacting in clinic till 5PM when I go to PT and get pushed on till I finally get to go home by 6:30 and then repeat. today i repeated plus SWINE FLU.</p>
<p>then I try to prepare for things like my interview on Friday, fall asleep on my computer and then wake up in the middle of the night and worry about the flexion contracture that gives me muscle spasm cramps randomly and frequently that leave me begging for tramdol and has not moved a single degree in the last three weeks.</p>
<p>no one wants to hear that some times I come home and I cry with frustration and pain. no one wants to hear about how some days I absolutely hate my chosen profession not just because it has so few answers for me but because  no one have the balls to admit they have no answers.  Good gosh people just tell it like it is. do you think I somehow don&#8217;t know that it sucks?</p>
<p>no see that doesn&#8217;t sound all that inspirational now does it&#8230;</p>
]]></content:encoded>
			<wfw:commentRss>http://perchesinthesoul.com/2009/11/16/the-uglies/feed/</wfw:commentRss>
		<slash:comments>2</slash:comments>
		</item>
		<item>
		<title>Circles&#8230;</title>
		<link>http://perchesinthesoul.com/2009/11/07/circles/</link>
		<comments>http://perchesinthesoul.com/2009/11/07/circles/#comments</comments>
		<pubDate>Sat, 07 Nov 2009 15:20:01 +0000</pubDate>
		<dc:creator>Amy</dc:creator>
				<category><![CDATA[Disability Stuff]]></category>
		<category><![CDATA[Medical School]]></category>
		<category><![CDATA[Patient-ness]]></category>
		<category><![CDATA[The Future]]></category>

		<guid isPermaLink="false">http://perchesinthesoul.com/?p=370</guid>
		<description><![CDATA[I spent a good portion of this week figuratively and literally lying prostate on a table having my someone pull my body into various positions until with my teeth gritted and  tears stinging my eyes I said &#8220;I surrender&#8221;   My orthopod last week said my x-rays were perfect, my PT progress was not.  He lifted [...]]]></description>
			<content:encoded><![CDATA[<p>I spent a good portion of this week figuratively and literally lying prostate on a table having my someone pull my body into various positions until with my teeth gritted and  tears stinging my eyes I said &#8220;I surrender&#8221;   My orthopod last week said my x-rays were perfect, my PT progress was not.  He lifted the precautions for PT which means we can attack the flexion contracture with full force.</p>
<p>And so we did and because scheduling PT is like scheduling meetings with Obama I had three days in a row. While it was exciting and somewhat luxurious to lay on my belly&#8230;  by the third night I was downing tramadol at 1 in the morning because the muscle spasms were bad enough to wake me from sleep. I have been down this road before&#8230;my connective tissue just gives up and hopes  I won&#8217;t notice.  Then I spend months fighting it back into submission.  Only to have it eventually give up again and we go back through this whole cycle of me laying prostate on a table for several months&#8230;.</p>
<p>Then there was the scheduling mishap that landed me on a surgery rotation.  And here I was waking up at 5 AM from my muscle spasms disrupted sleep cursing myself for letting Student Services sign me up for Peds ENT.  Three hours later I was either in the OR a place that makes me feel cold, nauseous and bored or in ENT clinic having my attending yell at me in front of patients to hold my otoscope like I held my pencil&#8230;I explained I was HOLDING IT LIKE I HOLD MY PENCIL&#8230;it never occurs to him maybe I don&#8217;t hold my pencil like everyone else&#8230;.and I have daily flashbacks to writing my name in Kindergarten over and over again. My teacher standing over me saying THAT IS NOT HOW YOU HOLD YOUR PENCIL. I remember looking at her and wanting desperately to please her but knowing fully well that I could not hold my pencil the way and form the letters.  Why couldn&#8217;t she just understand that this way was working for me&#8230;.</p>
<p>So here I am in my last 6 mons of a doctorate program and am being yelled at for how I hold my pencil.   Oddly not much as changed in 20 years.</p>
<p>or the last 8&#8230;</p>
<p>On Thursday night and Friday morning I put on makeup, I styled my hair, I wore designer clothes&#8230;.and went to my first peds interview here at home. I walked into my faculty interview and before I had barely sat my little spazzing butt in the chair Dr M looked me straight in the eye and said &#8221; Amy, I am not going to interview you, I know you well and you will have no problem staying here, you fit in well here and we want you to stay. Now surely they are pros and cons for you staying in town  but just so you know if you rank us high, you will match here. Now what other schools are you applying to?&#8221;   I sat there in my smart suit a little stunned, I had prepared answers to all the usual questions.  I had not expected to be courted, to be wanted badly enough to not even be interviewed.  My chief resident interview strated similarly after we looked at cute pictures of his baby girl..&#8221;Amy, everyone knows you and likes you, we want you stay here so I am going to give you the 5 min speal about why you should.&#8221; And the 5 min speal was not some standard thing it was obvious that it had been well prepared with regards to me&#8230;these people know me well, they have had 8 years to study me.  And part of my wall melted a bit I walked out slightly intoxicated by the idea that it would be so very easy not to break the cycle and just stay here&#8230;.</p>
<p>and here we are back to where I melted four years ago sitting in a Ruby Tuesday where my dad handed me a check of early inheritance.  And I dissolved into tears and called the med school admissions office the next morning to declare my intent.</p>
<p>so here I am laying prostate on a table with my teeth gritted and my eyes stinging wanting so badly to just say&#8230;STOP I have had enough but not wanting to appear&#8230;weak.</p>
<p>It is  so easy to just keep going, to just circle around and around and around&#8230;</p>
]]></content:encoded>
			<wfw:commentRss>http://perchesinthesoul.com/2009/11/07/circles/feed/</wfw:commentRss>
		<slash:comments>1</slash:comments>
		</item>
		<item>
		<title>Why my life will never be reality TV worthy&#8230;</title>
		<link>http://perchesinthesoul.com/2009/10/22/why-my-life-will-never-be-reality-tv-worthy/</link>
		<comments>http://perchesinthesoul.com/2009/10/22/why-my-life-will-never-be-reality-tv-worthy/#comments</comments>
		<pubDate>Thu, 22 Oct 2009 11:58:45 +0000</pubDate>
		<dc:creator>Amy</dc:creator>
				<category><![CDATA[Disability Stuff]]></category>
		<category><![CDATA[Patient-ness]]></category>

		<guid isPermaLink="false">http://perchesinthesoul.com/?p=361</guid>
		<description><![CDATA[I have had a relapse of the more severe anemia. My concentration at work is lagging and I am tired all the time. Its way worse than the hip issues.  Sometimes though all this makes me laugh. Maybe I laugh so I won’t cry. Yesterday I came home during my roommate’s bible study. It was [...]]]></description>
			<content:encoded><![CDATA[<p>I have had a relapse of the more severe anemia. My concentration at work is lagging and I am tired all the time. Its way worse than the hip issues.  Sometimes though all this makes me laugh. Maybe I laugh so I won’t cry.</p>
<p>Yesterday I came home during my roommate’s bible study. It was 9:30 time for my little anemic self to get ready for bed. Getting dressed and undressed on hip precautions (no bending past 90 degrees) takes twice as long and is mind-numbingly frustrating at times. I went to remove my socks with my good foot and in the process I pulled the scab off a bug bite. I am on Asprin to prevent blood clots post-surgery so I bleed from small cuts like I have stepped on nails. So here I am sitting there with blood running down my ankle. My house is full of strangers who block my way between my room and the bathroom. I am wearing only underwear on the bottom and a loose shirt on the top. I can’t put my PJ pants on because I don’t want blood all over them and all over my legs. I can’t wipe the ankle clean because I can’t reach it on hip precautions.  Finally I grab a blanket pool cover up thing from St Croix, wrap it around my waist, hop over to my flip flops (so not easy on a new hip) so I don’t drag blood all the way to the bathroom. Then I try to run fast  (as if I can run at all ever much less right now) through the hallway in hopes no will notice me running in a tropical pool cover up and night shirt with blood gushing from my ankle.  They did and they sort of stared at me as if I had lost my mind.</p>
<p>I turn the bath water on and stand there with my sponge with the long handle (compliments of Mt Sinai Orthopedics) and wipe away the blood and clean the tiny, tiny, tiny sore on my ankle. All that drama for a mm break in the skin. I walk back to my room, pull on my pants and laugh as I got into bed.  Then before I could read two pages I fell into the deep, desperate sleep of anemia.</p>
]]></content:encoded>
			<wfw:commentRss>http://perchesinthesoul.com/2009/10/22/why-my-life-will-never-be-reality-tv-worthy/feed/</wfw:commentRss>
		<slash:comments>1</slash:comments>
		</item>
		<item>
		<title>&#8230;.all grown up.</title>
		<link>http://perchesinthesoul.com/2009/10/06/all-grown-up/</link>
		<comments>http://perchesinthesoul.com/2009/10/06/all-grown-up/#comments</comments>
		<pubDate>Wed, 07 Oct 2009 02:16:25 +0000</pubDate>
		<dc:creator>Amy</dc:creator>
				<category><![CDATA[Disability Stuff]]></category>
		<category><![CDATA[Medical School]]></category>
		<category><![CDATA[Patient-ness]]></category>
		<category><![CDATA[The Future]]></category>

		<guid isPermaLink="false">http://perchesinthesoul.com/?p=355</guid>
		<description><![CDATA[Its been a while. I should probably write about my surgery and I will some time. It went well, recovering in Roanoke was fantastic. Now I am back in Wisnton and life is very well difficult. DO you remember what you wanted to be when you were five? eight? fourteen? twenty?  I do. Teacher, writer, [...]]]></description>
			<content:encoded><![CDATA[<p>Its been a while. I should probably write about my surgery and I will some time. It went well, recovering in Roanoke was fantastic. Now I am back in Wisnton and life is very well difficult.</p>
<p>DO you remember what you wanted to be when you were five? eight? fourteen? twenty?  I do. Teacher, writer, doctor, missionary (/doctor).  In academic international medicine I will get to be all four.  In six months I will have achieved the three out of the four and the fourth halfway on a shorterm basis. I&#8221;m a lucky (blessed) young woman.  Its not that I found my niche in the world, although I did.  Its not that i have some high and mighty calling or endless ambition. Nope that is not why I am lucky.</p>
<p>This weekend I am helping lead a retreat for young adults with disabilities and chronic illnesses. I just got the schedule. The theme of the weekend is WHEN I GROW UP.  We are asked as staff and campers to bring a COSTUME of what we want to be when we grow up for a special banquet.  There  is only one other disabled staff person who I have ever met working at this camp. She is very nice, smart and pretty. She lives in her parents&#8217; basement and volunteers at the hospital where I learn medicine. So its the two of us plus 40-60 other 20 somethings/late teenagers with disabilities in a room dressed as our greatest ambition.   I am sure most everyone will bring something or make it at camp. I am sure nearly everyone will dress up for the big banquet.  I just have one question&#8230;one thing that makes me put my face in my hands and feel very alone and yet very lucky.  I won&#8217;t be wearing costume and honestly I might be the only one.</p>
<p>Today I went to my first physical therapist appt in Winston. It was a nightmare. They were unprepared, lost my transfer paperwork from Virginia, had not processed my insurance correctly. But what really got me was they did not understand how I could possibly have a full time job and be recovering from a hip replacement at 25.  They didn&#8217;t understand that I have to be in clinic at certain times.   It was odd to them I was not on medicaid and had complicated out of state insurance (because the blessed school&#8217;s policy will not cover birth defects). They looked at me like I had seven heads when I told them no I can&#8217;t be there at 10 in the morning or 1 in the afternoon I have a job.  and yes a disability.</p>
<p>You know for the last three weeks I lived like I am supposed to live according to my society. &#8230;in my parents&#8217; basement.  I didn&#8217;t cook a single meal, my Mom did my laundry, my Mom picked up stuff I dropped so I would not have to struggle to not break hip precautions, my Mom or my friends drove me around for the first two weeks.  This is how most of my friends live (NOT ALL). Oddly enough we never had a single problem with my insurance, I got therapy for proper amt of time each week and everyone talked about how freaking inspirational I was.  Funny how well everyone plays around when you play the part they expect you to play.</p>
<p>Being the only one in a room full of disabled people &#8230;.its awkward.  I didn&#8217;t wake up one day and decide I am going to be the one disabled kid who moves out of their parents&#8217; basement. I just grew up, went away to college, chose the career of my choice and lived my life.  I&#8217;m not a freak, I&#8217;m not a pioneer, I&#8217;m not anything particularly amazing. I am just a 25 yo almost doctor who happened to be born missing a few nucleotides.  My parents aren&#8217;t superheros, my doctors aren&#8217;t brilliant, we all just missed the memo about the whole disability checks, medicaid basement thing.</p>
<p>My life is difficult but it only compounded by a society that just can&#8217;t get over the fact that I became who i wanted to be when I grew up.  And not despite of my disability or because of my disability. But because that&#8217;s what I wanted and that&#8217;s what I worked for.</p>
<p>Today I heard the sound of a heart that was born backwards (transposition of the great vessels) but corrected almost normal state by human hands. Doctors&#8217; hands.  Today I finally began to master heart murmurs and laughed with a little kindergarter and teased a young man with Downs&#8217; Syndrome about his girl friend.  And I loved it.</p>
<p>so on Sunday I will put on my scrubs and my stethoscope and my white coat and my hospital ID badge with my name and date of graduation there in small block letters.  And no I don&#8217;t know what corny, inspirational thing I will tell these young adults this weekend other than this: I am so happy being a pediatrician, I don&#8217;t think I could ever do anything else.  And our social norms suck&#8230;ignore them.</p>
]]></content:encoded>
			<wfw:commentRss>http://perchesinthesoul.com/2009/10/06/all-grown-up/feed/</wfw:commentRss>
		<slash:comments>2</slash:comments>
		</item>
		<item>
		<title>Traditions&#8230;..memories&#8230;.nostagia</title>
		<link>http://perchesinthesoul.com/2009/09/07/traditions-memories-nostagia/</link>
		<comments>http://perchesinthesoul.com/2009/09/07/traditions-memories-nostagia/#comments</comments>
		<pubDate>Mon, 07 Sep 2009 21:43:43 +0000</pubDate>
		<dc:creator>Amy</dc:creator>
				<category><![CDATA[Disability Stuff]]></category>
		<category><![CDATA[My Mom]]></category>
		<category><![CDATA[Patient-ness]]></category>
		<category><![CDATA[Random]]></category>
		<category><![CDATA[The Future]]></category>

		<guid isPermaLink="false">http://perchesinthesoul.com/?p=353</guid>
		<description><![CDATA[My family loves traditions.  Making our family Christmas gifts, singing off key on each other voice mail on our birthdays,  the annual cousin Christmas play, dying eggs at Easter, red velvet cake on my parents&#8217; birthdays in Feb, Red Lobster for my sister&#8217;s, advent calenders, trivia at the dinner table, lunch after church and I [...]]]></description>
			<content:encoded><![CDATA[<p>My family loves traditions.  Making our family Christmas gifts, singing off key on each other voice mail on our birthdays,  the annual cousin Christmas play, dying eggs at Easter, red velvet cake on my parents&#8217; birthdays in Feb, Red Lobster for my sister&#8217;s, advent calenders, trivia at the dinner table, lunch after church and I could go on. We mark our milestones and holy days as a family with joyous rituals  always remembering years before variables on a common theme.</p>
<p>Preparing for major orthopedic surgery in my family has familiar rituals  too because its been a somewhat frequent occurrence in our lives.  Some are very practical, some are down right silly.  Its been  a while but one would think it was just last year if you watched how quickly we all fall into the roles we know so well. My Mom sets out arranging things even with me signing consents and doing most of the arranging now she still finds ways. Dad reassures Mom, me, himself with daily pronouncements that everything is going to be ok.  Emily and Tori shuffle in and out of the dialogue offering books, chocolate and wanting to know long i will monopolize all of our lives (my primary question as well) particularly my parents&#8217;.</p>
<p>I go to the library stock up on books,  DVDs, audiobooks,  stock up on food. As I packed my car this morning. I  packed pillows. I went to target and bought new undergarments and socks. I found my one pair of shorts that I own and stuff them in my suitcase.  I plan the traditional &#8216;last meal&#8217; via google and decide on wine and crab cakes (it is Maryland after all).  All the paperwork has a folder, all the appointments are made and all the necessary items are purchased.  I then of course am now taking the traditional joy ride which has expanded considerably since childhood with my driving ability and all terrain vehicle.  This time it will include a week of visiting, going to the beach and general traveling.</p>
<p>And just like with all rituals and traditions&#8230;I remember.  But they are strange memories as I suppose all childhood memories are to some degree when we looked back at them with  adult reason and knowledge. The last time I had major hip surgery I was 13 and although some times I thought what it would be like 10-50 years from now, most of the time I just wanted to be able to go through a whole year of school without having to be on home-bound.  I wanted to get through a Spring where I didn&#8217;t break a major limb to pieces over something ridiculous like walking the stairs.  I wanted to be able to stand for a whole play or walk my dog or go hiking with my family like I had when I was younger (5 yo- 10 yo). Frankly, my life was pretty awful between the pain, the social isolation and lost of the abilities to do many, many things I love. I was begging for surgery.  It made so much  sense.</p>
<p>But now my desires are so much bigger, I haven&#8217;t been &#8216;sick/injured&#8217; from Kniest in a decade other than an occasional minor mishap. I have traveled the world, graduated from college, live independently, drive a car and do crazy things like ski and play doctor.  And I don&#8217;t want to stop any of those things, moreover I want to do more like live overseas, complete a residency, get married, have kids, raise them, etc,etc&#8230;  Handing over my life to the hands of a surgeon is so much more difficult now. The stakes are higher, the leap is so much scarier.  Its not about just making it off the ground it, its about finding my way back to  the lofty altitude I have been cruising at for the last 9 years.</p>
<p>The roles are the same, the rituals are the same but the dance is so much more complicated than I remember.</p>
]]></content:encoded>
			<wfw:commentRss>http://perchesinthesoul.com/2009/09/07/traditions-memories-nostagia/feed/</wfw:commentRss>
		<slash:comments>1</slash:comments>
		</item>
	</channel>
</rss>
