tag:blogger.com,1999:blog-90426849898703341122024-03-19T03:27:53.837-04:00kelly p. berginKPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.comBlogger319125tag:blogger.com,1999:blog-9042684989870334112.post-4661832361164660982019-03-23T07:59:00.001-04:002019-03-23T07:59:58.277-04:00The Unknown: An Update on Transplant<div style="color: #454545; font-stretch: normal; line-height: normal; margin-bottom: 4px;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Hi guys. It’s been a minute & I wanted to update you guys (likely mostly just Grandma).</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I’m at a point in my disease where we have ran out of the options that have been carefully studied and administered. In November, I broke through with a terrible infection for the 3rd time in six months. We decided that the medicine I came to NIH for, Ruxolitinib, was not working anymore. And so we put together a transplant timeline and as a Hail Mary, my doctor put me on a drug that is similar to the Rux but has been mostly untested in STAT1 patients. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Since starting the drug and IVIG therapy in December I’ve had viruses, fevers, swollen joints, minor oral thrush & mouth ulcers and nearly constant nausea. But I have avoided an acute hospital admission. We are buying time with this plan, trying to hold off on transplant, which I have begged to push back 3 times now. If things get worse, we could be looking at September. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">But although I am in a lot of pain, it still does not compare to how the bone marrow transplant will obliterate me, likely keeping me from my normal life for a year or two, depending on complications. And so I remain indecisive, and I treat the symptoms but not the underlying cause, and I hope and pray I can stick this out as long as possible.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I am fighting so hard. And I will not stop.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjURkI2k47iCDm9-yRN3_6Z9aO-2y0SmUPbfhwPYeT1BLOr2Zp6AATrW8_8fwGprYMFGQv5KkXd0KZkNw4-Gr9eVo7Ap5PTVNt8itzeYBVN01USdAjbG2CJABQypG58mHLyOXJ5WnziciI/s1600/09C56960-2E17-4101-AC4D-81251FE4CB9B.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><img border="0" data-original-height="1600" data-original-width="1202" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjURkI2k47iCDm9-yRN3_6Z9aO-2y0SmUPbfhwPYeT1BLOr2Zp6AATrW8_8fwGprYMFGQv5KkXd0KZkNw4-Gr9eVo7Ap5PTVNt8itzeYBVN01USdAjbG2CJABQypG58mHLyOXJ5WnziciI/s320/09C56960-2E17-4101-AC4D-81251FE4CB9B.jpeg" width="240" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">These ding dongs need me ♥️ </span></td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHyo37lY0JB9JtCGMmnd3DU5ioStrnNMHHUv2692F_EJ6SU3jKUE92K9OujsGb9fBTQPN8TbDU4aqmGfOm74cME6lPkQ-b8C6WGmvlRa9xEcK31wZLZHgsIz8W4M8FqijwaONKU5dYMC8/s1600/48CF1D4E-D423-4F87-8BC9-D12BD81E8D14.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="971" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHyo37lY0JB9JtCGMmnd3DU5ioStrnNMHHUv2692F_EJ6SU3jKUE92K9OujsGb9fBTQPN8TbDU4aqmGfOm74cME6lPkQ-b8C6WGmvlRa9xEcK31wZLZHgsIz8W4M8FqijwaONKU5dYMC8/s320/48CF1D4E-D423-4F87-8BC9-D12BD81E8D14.jpeg" width="194" /></a></div>
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<li style="color: #454545; font-family: ".SF UI Text"; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: ".sfuitext"; font-size: 19pt;">There, There by Tommy Orange (Stunning. I’ll remember it forever.)</span></li>
<li style="color: #454545; font-family: ".SF UI Text"; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: ".sfuitext"; font-size: 19pt;">I’ll Be Gone in the Dark, Michelle McNamara (Worth all the nightmares.)</span></li>
<li style="color: #454545; font-family: ".SF UI Text"; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: ".sfuitext"; font-size: 19pt;">An American Marriage, Tayari Jones (Should be required reading, even if I did think it got a little soapy in the end.)</span></li>
<li style="color: #454545; font-family: ".SF UI Text"; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: ".sfuitext"; font-size: 19pt;">Educated, Tara Westover (Captivating. Smart. Language a little mechanical but still, a great read.)</span></li>
<li style="color: #454545; font-family: ".SF UI Text"; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: ".sfuitext"; font-size: 19pt;">Manhattan Beach, Jennifer Egan (Technically published in 2017, but the paperback is out now and you should all sit down and enjoy the hell out of it, even when it gets a bit ridiculous)</span></li>
<li style="color: #454545; font-family: ".SF UI Text"; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: ".sfuitext"; font-size: 19pt;">Here We Are: Notes for Living on Planet Earth, Oliver Jeffers (my favorite childrens book. Something to give a new baby!)</span></li>
<li style="color: #454545; font-family: ".SF UI Text"; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: ".sfuitext"; font-size: 19pt;">Small Fry by Lisa Brennan-Jobs (Read it in less than a day. Exquisite character studies. Will make you wish you grew up in California.)</span></li>
<li style="color: #454545; font-family: ".SF UI Text"; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: ".sfuitext"; font-size: 19pt;">Calypso, David Sedaris (His best yet. I borrowed it at the patient library and then bought it to treasure. Funny as always but with a sharp view of aging and death. I wish I wrote like this, and I’ll spend forever trying!)</span></li>
<li style="color: #454545; font-family: ".SF UI Text"; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: ".sfuitext"; font-size: 19pt;">You Think It, I’ll Say It, Curtis Sittenfeld (thoroughly enjoyable!)</span></li>
<li style="color: #454545; font-family: ".SF UI Text"; font-size: 19px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: ".sfuitext"; font-size: 19pt;">The Final Voicemails, </span><span style="font-family: ".sfuitext"; font-size: 19pt;">Max Ritvo (stunning, daring poetry. Heart wrenching meditations on loss and illness and our fucked up, beautiful lives. Ritvo died of cancer at 26, and it’s a huge loss. This is final collection and holy moly, it’s really something.)<div class="separator" style="clear: both; text-align: center;">
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I've spent the last 16 days inpatient at NIH. I had a fungal infection that invaded my mouth, esophagus and stomach. So eating sucked. I could barely shove apple cider donuts down my gullet without extreme pain. (It did not stop me from trying.) Eating jalapeno chips was excruciating too. Tip: if your mouth is filled with open sores and thrush, don't try to eat jalapeno anything. It is not worth the tears.</div>
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It's been awhile, and I suppose I had forgotten how to exercise this muscle, which will atrophy if not used properly. I write long Instagram captions, and I try my mightiest to make my doctor laugh in the emails we send each other daily, and it definitely works but...opening up a Google doc and writing became hard. Some of that was medication, an anti-migraine med that worked to dull my edges and had me forgetting simple words and the definition of the word histrionic. Another thing was that I was at a loss to explain what was currently happening to me. It was hard to grasp. It has not been easy.</div>
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But I've also been having a helluva lot of fun. My doctors always joke that they would feel a little bit better if I had 20% less of a social life. They want me to stay in and read sometimes but I can't, not when there's bonfires on the beach and music festivals in my backyard. There is too much to do, and after spending so long on the shores, I needed to jump in. I made so many new friends this year, a thing that is hard to do when you're in your thirties, but a thing I needed nonetheless.</div>
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These last 2 weeks have been hard, and every month, when I visit NIH, I am reminded that a bigger hurdle lies ahead. The dreaded bone marrow transplant. We were all ready to do it April 27; we literally had the OR booked to suck out my brother's marrow (he'll be okay), but I freaked at the last minute. And with good reason. I don't want to spend four months in DC, most of them inside this hospital room where hardly anything good ever happens. Bad news is delivered bedside, baby, and there's no escaping that. </div>
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So we held off. I intend to keep holding off for as long as they will let me. Which looks like 6 months or more. I don't want to miss my best friend's wedding, and I would be loath to miss summer, my favorite season but I eventually have to do this giant thing that's scary. I am certain I will survive; I have the fight in me, I have the support behind me, I am strong. I am weary, but I am strong.</div>
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This blog was supposed to be an update but it's also a love letter. To my family for their steadfast love and commitment; it's never a question of if they will support me. They are there, they are priceless. For my nieces who literally keep me going; there have been dark nights where their faces seemed the only flicker of light, and I will always keep on to be there for them. For my friends, new and old, who envelop me in love and support. From gift cards to their kids sending me videos, it all means so much. So so much. And everyone who has followed this blog from its' nascent beginnings in 2008, and to now, 10 years later on Instagram and Facebook. Thank you. Every message lodges a meaning in me: you are beloved, you can keep on. </div>
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I promise to update more when it becomes available but for now, we are hopefully on a steady course toward eventual transplant. Fingers crossed another viable cure surfaces before then but if not, I know we will go through this together. </div>
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With love and so much appreciation,</div>
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Kelly</div>
KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com16tag:blogger.com,1999:blog-9042684989870334112.post-55660708371191400482017-09-26T12:30:00.001-04:002017-09-26T12:30:36.354-04:00Sadie at FIVE<span id="docs-internal-guid-076510d4-bf04-5f0a-4040-0c2683a7c6da"><div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-family: Arial; font-size: large; white-space: pre-wrap;">Since you turned five years old a week ago, I’ve been annoying you by asking the same question over and over. </span></div>
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<span style="font-family: Arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">“Hey Sadie,” I’ll start, and your eyes will begin to glaze over, knowing what’s coming. </span></span></div>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt; text-indent: 36pt;">
<span style="font-family: Arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">“What’s it like to be five?” I’ll say and you’ll look exasperated and give me the same reason as always.</span></span></div>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt; text-indent: 36pt;">
<span style="font-family: Arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">“I don’t know, Auntie! It just feels good.”</span></span></div>
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<span style="font-family: Arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Oh, kid. You kill me. </span></span></div>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt; text-indent: 36pt;">
<span style="font-family: Arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">From the moment I watched you take your first breath and felt your warm and reassuring heartbeat on my hand as I lay it on your chest, you’ve had me. Not even a week after your birth, I had to get on a plane to Colorado to run a previously planned half marathon relay. I know today, if I told you that, you’d look at me like I was crazy. Auntie? Running? Was the world ending? Nope, bud. But in a way, my world was ending, a bit. I would go from running to paralysis to ICU rooms and then finally to the NIH, all in the next five years. So my world was beginning to change in the scariest ways, but I had a new buddy along for the ride.</span></span></div>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt; text-indent: 36pt;">
<span style="font-family: Arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Sometimes I frustrate your mom because I’m a cranky old lady who, like your sister, is a bit of an aggressor when it comes to getting what I want. So I’ll text your mother “VIDEO”; no please, barely a thank you, just a desperate call into my dope niece void. I’ll be in the hospital missing you guys so bad, it makes everything else hurt more. But then you’ll appear on my screen, cuddling Adelaide, singing me songs, making up Auntie dances, wrapping me in a thick cotton blankie of love. You’re always there.</span></span></div>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt; text-indent: 36pt;">
<span style="font-family: Arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">The last time I wrote you a letter like this you were 3 and now you’re 5, and your world is opening in ways you haven’t even begun to imagine. You can swim now, and you’re so proud of yourself, and I am too. You can ride your Big Wheel ahead of me while I push Adelaide on the bike and I feel so lucky to watch the back of your head zoom away. You’re overcoming some big fears and doing it like a big kid. You tell me to stop spoiling you. You tell me you have enough toys. You tell me we should donate some of my books and your toys to poor people. You are incredibly empathetic. </span></span></div>
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<span style="font-family: Arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">And sometimes you break my heart. Because you worry about me. You know it’s not normal, all the time I spend in what you call the NIH: the superhero hospital. You say things that cut me deep; last week you said you prayed I would be alive forever and that I wouldn’t die soon. No one has ever used those words around you; we keep you protected, but you get it. Maybe what you don’t know, at this young age, is that your love is a force like I’ve never know. Your love pushes me out of bed. Your love makes me silly with your friends because I know you love when your friends call me Auntie, too. You’ve told me that. You also told me you don’t want me to have kids so you don’t have to share me. Hey, dreams sometimes conflict. Your greatest wish is that we live in an apartment together, just a pair of best buds, having your coveted special time with Auntie. Me too, buddy. </span></span></div>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt; text-indent: 36pt;">
<span style="font-family: Arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">I love how you love New York City. I love that you love dinosaurs and princesses and Moana and superheroes. I love that you see my illness has being taken care of by superheroes: recently you asked me if my doctor was a superhero. I reminded you that superheroes are pretend and you said that you wished they weren’t, so they could fix me.</span></span></div>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt; text-indent: 36pt;">
<span style="font-family: Arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Whenever I’m in pain in front of you, you tell me to try not to think about it. And in the days I’ve spent in the hospital, or the nights alone and sick at 3 am, I listen to you. I don’t think about it. I think about you and the Ooga monsters, and everything seems alright. </span></span></div>
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<span style="font-family: Arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;"><br /></span></span></div>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt; text-indent: 36pt;">
<span style="font-family: Arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">On the night I laid my hand on your chest, I knew I’d do anything for you, beat anything that might come in between us. You are growing up, so lovely and kind, such a helper. I wouldn’t exchange these last five years for a damn thing.</span></span></div>
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<span style="font-family: Arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Love,</span></span></div>
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<span style="font-family: Arial; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Auntie</span></span></div>
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I still can't sleep here, but that's not the hospital's fault.</div>
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I did some decorating yesterday, a lame excuse to buy all the dumb stuff at the gift shop I'm sure my parents would refuse me when they come. Take, for instance, this doll of Teddy Roosevelt. I mean, which other hospital could possibly sell a tribute to our 26th president? Not Mount Sinai, that's for sure.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeDrFy0xTM81B6b4sqrjTaRDGe8Ox3GEJoBpbH2KeTHwjxr4KI7sdkDyeisGEOqQBJ1MOhit48PhBJ6lkR8ur3oTVr9K1b6QVzdHgauval8TFL4r6OxkJyn9CNd9krLvRszrztLZ1egk4/s1600/17554498_10100367483152932_8865742131279237509_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeDrFy0xTM81B6b4sqrjTaRDGe8Ox3GEJoBpbH2KeTHwjxr4KI7sdkDyeisGEOqQBJ1MOhit48PhBJ6lkR8ur3oTVr9K1b6QVzdHgauval8TFL4r6OxkJyn9CNd9krLvRszrztLZ1egk4/s320/17554498_10100367483152932_8865742131279237509_n.jpg" width="320" /></a></div>
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It's only my second day here but I promised updates and though they may be as dry as the four graham crackers I just shoved in my mouth, hang in there.</div>
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On Sunday, I said goodbye to my girls and headed to Metropark, bound for DC.<br />
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I barely made it off the train in time due to an ill-advised moment of Instagram stalking. I I basically crowd surfed above an angry mob toward my suitcase, just in time to stand clear of the closing doors and enter the gorgeous Union Station.</div>
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I got into a Lyft with a deaf driver who did not appreciate my attempts to finger spell direction and finally texted me to stop trying to use ASL. I responded with my newest sign: bullshit. JK grandma!</div>
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I made it to the National Institutes of Health after a thorough security check and settled into a far off wing they'd resuciatated for patients after a water main break. I was thrilled when they called it the Ebola unit because that meant no roommates for me. And since my last roommate was fond of crapping the bed literally every 45 minutes, I gazed upon the empty bed next to me with teary eyes.</div>
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So: why the f am I here again? Didn't I spend most of February in the hospital, not losing weight despite vomiting everything? Aren't I amazing about not being bitter motheruckingsonofabitchskinnybastards</div>
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I came down to begin a drug called ruxolitinib. Thie drug has recently been used in a handful of patients with my STAT1 genetic mutation. The hope is the drug stops some of the mouth sores, the infections and the general malaise and fatigue that awaits me every day. It'd prevent aneurysms and generally save me for a bit. Sadly, it would not rid me of Type 1 Disease. That bish is here to stay. Dammit.</div>
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Unfortunately, for the last few weeks, I've had extreme jaw and mouth pain. Yesterday I saw the dental clinic. The doctors there decided I need IV antibiotics and the experimental treatment I traveled here for will have to wait until my mouth heals.</div>
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This means that my two week stay may be more of a three week stay which a huge bummer because I'm on day 2 and I've already anger colored all my coloring books in a manner in which suggests I need occupational therapy.</div>
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So the plan is to get a line in today and go from there. I'll also meet with pre-anesthesia and tomorrow they'll Michael Jackson dose me while they pull my last remaining teeth left.</div>
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In the mean time, thanks for the love! </div>
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Love you all, in vary degrees of appropriateness.</div>
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PS: many of you have asked for my NIH address:</div>
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<span style="background-color: #0084ff; color: white; font-family: "helvetica neue" , "segoe ui" , "helvetica" , "arial" , sans-serif; font-size: 14px; white-space: pre-wrap;">NIH address: Kelly Bergin
National Institutes of Health
9000 Rockville Pike
Hatfield Building , Unit 5NE, Room 5-2412
Bethesda, MD
20892</span></div>
KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com3tag:blogger.com,1999:blog-9042684989870334112.post-63410716528096966512017-02-10T20:10:00.002-05:002017-02-10T20:54:55.912-05:00What Happens Now: the NIH Special Edition Blog<span style="font-size: large;">Last week at the National Institutes of Health, my team of doctors met with my parents and me for a wrap-up meeting. It had been an incredible week, full of great attention to each of my symptoms. We sat down after 5 days and listened to the team of doctors and their plan to treat the genetic mutation I and 100 other people in the world were born with. Yes, only 100-200 other humans on this planet have this mutation! <i>I always knew I was special. *Here's more about Primary Immunedeficiency disease: </i>http://primaryimmune.org/about-primary-immunodeficiencies/</span><br />
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<span style="font-size: large;">The short summary of this fatal condition is scary. Some with this mutation have severe disease and as a result, have died as children and young adults. Those with mild disease have lived into their 50s. And those with moderate disease fluctuate in their prognosis. I have a moderate/medium fry sort of disease, perfectly mediocre, just like my grades in high school.</span><br />
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<span style="font-size: large;">There is no cure but there is a bone marrow transplant option. It's as close to a cure as possible, which is cool, BUUUUUT there is a significant risk of terrible side effects, and my doctor (an expert in BMT and Stat1 GOF) has seen patients die of infection after getting new bone marrow. A bone marrow transplant requires the immune system of the sick patient to be completely replaced by their donor's, but it doesn't fully erase the mutation. However, the transplant may end up being necessary for me. </span><br />
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<span style="font-size: large;">A BMT would require at least 60 days inpatient. And then I would temporarily live down here for awhile in patient housing as I recover. Because of the nature of my disease, a bone marrow transplant is riskier than it is in most cancers. There's the risk of graft versus host disease and death if the transplant does not take and a new immune system fails to thrive. Scary stuff, I know! It's possible I won't need one if these new treatments work but it is absolutely something that is on the table and on a 6 month to a year timeline. The risk in waiting is that I could continue to pick up infections that have irreparable damage. Patients with this mutation also have an increased risk of cerebral hemorrhage and they found a tiny aneurysm that is too small to worry about for now, but it will be followed up every 3-6 months with MRA scans.</span><br />
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<span style="font-size: large;">The good news is that we don't have to jump to a BMT right away. But first, we're gonna try a drug given to multiple myeloma patients. That's where we will begin. I'll be back inpatient for a week this month to see if this experimental treatment might delay the transplant.</span><br />
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<span style="font-size: large;">In other news, my organs are all in decent shape which is great. Nothing is an emergency right now, and everything is going to be super closely monitored. My doctor told me a bucket list is a good idea but also told me not to freak out and think i'm about to die. Which I totally only do once a day hour minute WHATEVER MA</span><br />
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<span style="font-size: large;">On my last morning the psychology team came in to see how I am dealing with the news. It's probably the denial but I feel OK about it. Obviously the mortality rate scares me but if it works, my life would dramatically improve. Nothing can reverse some of the damage that has been done, and type 1 diabetes is here to stay. But it would likely rid me of the constant infections and inflammation that wear me down and keep me in the hospital. I'm very grateful to have the team that I have, here at NIH and at Mount Sinai. One of my NY doctors, Edith, even came down for the day yesterday to see what they had in mind and to see how I was doing. I feel extremely confident that we aren't rushing into this. The timeline gives me generous amount of time to travel and see a few things in case I'm isolated from the world for 3 months.</span><br />
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<span style="font-size: large;">To sign up to be a donor, please visit BeTheMatch.com. The initial test is just a swab. If you do match, the procedure is unpleasant but not terrible. Plus you'd be saving a life. MYYYYY LIFE! (JK.)</span><br />
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<span style="font-size: large;">And to help support my personal bucket list and the <a href="https://support.firstdescents.org/fundraise?fcid=441725" target="_blank">First Descents organizatio</a>n, which has brought so much joy and meaning to my life as things have gotten harder, please visit my fundraising link. I plan to walk a 5K and I'm excited to raise money for my favorite organization! <a href="https://support.firstdescents.org/fundraise?fcid=441725">https://support.firstdescents.org/fundraise?fcid=441725</a></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh189RIg5iSVg6hZoxv7qL4jG0eIoDZ4lnZJWwx9NxvSlGbwQixxZVAyJ3vwdPZ6d5WXNmmIbaQATVif-sVMYpIXxHYRL2FmQB2OJ6kes4kvUqoBh7En9oEW8wu4jGm4r-yRRjZuh4AXlg/s1600/16508055_10100347281252702_5184514296036212724_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh189RIg5iSVg6hZoxv7qL4jG0eIoDZ4lnZJWwx9NxvSlGbwQixxZVAyJ3vwdPZ6d5WXNmmIbaQATVif-sVMYpIXxHYRL2FmQB2OJ6kes4kvUqoBh7En9oEW8wu4jGm4r-yRRjZuh4AXlg/s320/16508055_10100347281252702_5184514296036212724_n.jpg" width="256" /></span></a></div>
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<span style="font-size: large;">As always, thank you so much for your love and support. I have so much to live for and I will fight, fight, fight as long as I can.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjntF04RxT7zYXrjlkvvoS52ExFcxulkJkveq1Rr2YgFQF6-EqTL4VBpMsC254v503TDR5vkQey6MolfkW75Ezi1DkeP1ofxn8MeaAf_jm9jgSDfeYe8fxjKqWKNujM7C6I4EnirNhDQI4/s1600/16508318_10208464567915242_4894017378170887285_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjntF04RxT7zYXrjlkvvoS52ExFcxulkJkveq1Rr2YgFQF6-EqTL4VBpMsC254v503TDR5vkQey6MolfkW75Ezi1DkeP1ofxn8MeaAf_jm9jgSDfeYe8fxjKqWKNujM7C6I4EnirNhDQI4/s320/16508318_10208464567915242_4894017378170887285_n.jpg" width="320" /></span></a></div>
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<span style="font-size: large;">Love,</span><br />
<span style="font-size: large;">Kelly</span><br />
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="color: #444444;">Guys! Someone actually paid me to write something. </span></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="color: #444444;">Check it out</span> <a href="http://www.xojane.com/it-happened-to-me/teeth-rotting-and-dentures-before-30" target="_blank"><span style="color: blue;">here</span></a><span style="color: #444444;">!</span></span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">insert photo of me looking pleased with myself for finally overcoming my fear of rejection (JK not over it)!</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">oh, here's one. i definitely look pleased here, and not at all tipsy off of auntie's merlot</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">we'll pretend it's a celebratory glass of wine.</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">i'm so glad you don't need teeth to drink wine.</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;"><b>short update since i wrote aforementioned essay:</b></span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">i was in hospital for a week in September for a staph infection. my new favorite doctor who curses like a sailor (heart emoji) had inadvertently caused a staph infection when he performed a mundane skin cancer removal. since my body sees any cut or even splinter as an excuse to throw a freakin' deadly ass germ party, my skin turned red and hot and a little green. i was in the hospital for a VERY LONG week, during which two of my roommates died.</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">yes. two.</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">on my last day before i was released, i took a little nap. i was a little bit better which means i was actually able to sleep. i'd taken my teeth out to sleep--dentures are wicked uncomfortable--and when I woke up, they were gone. the cafeteria guy, a man i thought was my FRIEND, had tossed them when you came to get my tray.</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">what. the fuck.</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">admittedly, i put them in a cup next to a tray. but they weren't <i>on</i> the breakfast tray. they were merely tray adjacent! </span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;"><b><i>TRAY ADJACENT!</i></b></span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">so now i am toothless again while i wait for the new denture to be made. i'm calling it Mouth Knives: The Sequel. i've been without teeth for two months. the remake of the denture has been a crappy, long-delayed sequel full of complications, budget issues and general frustration. it's the Spiderman 2 of dentures. (what the hell is that sentence?)</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">i will finally have teeth again come Monday. my lisp will be banished and i'll totally feel comfortable in my own skin. HAHA jk i never feel comfortable in my own skin since my body is actively trying to destroy me 24/7. </span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">but you guys know what i mean.</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">--</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">happy holidays, folks.</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">i'm thankful for all of you and also irish soda bread and Nerds for my blood sugar lows.</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">i'm also thankful for president obama. </span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">merry whatever!</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">xo</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;">kpb</span></div>
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<span style="color: #444444; font-family: "georgia" , "times new roman" , serif; font-size: large;"><b><i><br /></i></b></span></div>
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KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com7tag:blogger.com,1999:blog-9042684989870334112.post-13688079983349165202016-11-18T20:08:00.000-05:002016-11-23T12:00:21.900-05:002016: You Suck<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj944tbxsX04FjmHYLye4dDX_ca8u_uMM4_kC6UhI5Tf3EvN8IgTf6lvVibh90iN_MXRYbZvamzp1peW0qBo6Li822JS1tAzrXs9oyH1C7bVpw0wyf4UDJftOq1k2dgHEr-z-AT94leQYQ/s1600/NIH.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj944tbxsX04FjmHYLye4dDX_ca8u_uMM4_kC6UhI5Tf3EvN8IgTf6lvVibh90iN_MXRYbZvamzp1peW0qBo6Li822JS1tAzrXs9oyH1C7bVpw0wyf4UDJftOq1k2dgHEr-z-AT94leQYQ/s320/NIH.jpg" width="320" /></a></div>
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<br />
Uncle Sam Wants You..your medical history?<br />
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Yes. </div>
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This week, the government's hospital, the National Institutes of Health, agreed to accept me as a patient.</div>
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<br /></div>
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Here's a sample of the cover letter that my doctors at Mount Sinai Hospital put together (I've edited out any information that would embarrass me, obviously):<br />
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Whew boy! And that was only the start.</div>
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It took six months to prepare my case to be presented to be accepted and it took six hours to get accepted. I'm not sure when I go, or what this means.</div>
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I am hopeful that a bone marrow transplant is taken off the table and another medicine or therapy is given a chance. I know a cure isn't possible and that it may be very true that I am outliving the latest model every single day. I don't know how scary this can get; I only know how scary it has gotten. </div>
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I'm willing to try anything to alleviate the diabetes or constant infection. I am scared the diabetes is so out of control that I'll lose limbs or my eyes. It all feels real now.</div>
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Here's to hoping.</div>
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In other news, Kristie's cancer surgery went great. Oh yeah. Kristie has thyroid cancer! Like I did in 2008! What shitty luck is that.<br />
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Today she will find out what stage her cancer is and whether she requires more treatment. Please keep her in your prayers!<br />
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Times be tough but luckily we have her beautiful girls to distract us from the stress of cancer in our family again.</div>
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We are all lucky to have my parents to propel us forward while having our back. </div>
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--</div>
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I've been spending a lot of time in NY lately, walking around by myself, reminiscing about the lush years of my twenties. New York is still my favorite, forever home.</div>
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I have a part time rental on the Upper West Side. I love being back in New York. It's like I'm living again. I hate cliches but my New York love is one big Billy Joel medley of Yankee hats and Queensboro Bridge jokes and NEW YORK NEW YORK I LOVE YA NEW YORK.<br />
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--</div>
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no one knows how much i dance in joy around my apartment. </div>
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it's so good.</div>
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<br /></div>
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i cry too but...man, i dance a lot. even on the saddest days. even on the Trump days. even on the worst days of the worst days, i put on Hamilton and i fucking dance.</div>
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<br /></div>
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that's what's getting me through.</div>
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<br /></div>
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also, <a href="https://www.instagram.com/p/BMzd1YihWF_/?taken-by=kellybergin" target="_blank">this</a>. </div>
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--</div>
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i love all of you.</div>
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KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com5tag:blogger.com,1999:blog-9042684989870334112.post-66954602719016496982016-09-09T22:38:00.002-04:002016-09-10T07:30:09.170-04:00A Post With a Narrative; Or, Kelly's Second Newsletter; Or An EntirelyNew Blog Post If You Don't Subscribe; Okay.<div class="message-body" style="border: 0px; color: #505050; font-family: "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 16px; line-height: 22px; margin: 0px 0px 35px; outline: none; overflow: hidden; padding: 20px 0px; vertical-align: baseline; word-wrap: break-word;">
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<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">Let's just skate right into the mess.</span></span></div>
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</span><br />
<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">This spring, after lots of back and forth between hospitals in NYC, NJ, and California, I decided to consolidate most of my care to one hospital. Here is the very long story of how and why this came about, the new genetic disorder I know I have and notching my second carcinoma in only eight years. Read more for more fun!</span></span><span style="font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 22px;"> </span></div>
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<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">Since I left New York in 2012 for the great unknown (the rest of America), the most important members of my medical team were scattered in Los Angeles and New Jersey and that one airport clinic in Ohio. </span></span><br />
<span style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span>
<span style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">Now in 2016, my doctor at the helm of Operation: Keep Bergin alive is an immunologist I met when I was sixteen and leaving my doctors at Children's Hospital of Philly after 15 years. I was also in the midst of My Very First Lupus Flare and was seeing every doctor in New York to figure out what the hell was going on. I first met Dr. Cunningham-Rundles (known as Dr. C) in 2001, when I weighed considerably less, had a crush on Zac Hanson </span><span style="border: 0px; color: #555555; font-family: "arial"; font-style: italic; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">and</span><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"> Amanda Bynes, wore a puka shell necklaces and had approximately 1/3 of the diseases I know have today. Dr. C is "doctor famous" in her field and in NY for being a freakin’ genius. See? http://nymag.com/nymetro/health/bestdoctors/features/593/ And she’s famous to me because I’ve seen Robert F. Kennedy Jr. in her office, </span><span style="border: 0px; color: #555555; font-family: "arial"; font-style: italic; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">and</span><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"> Fantasia from American Idol (not together but SHIT, that would have been RICH).</span></span></div>
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<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">When I saw her again in late March, I had been away from Mount Sinai for five years. We had a great reunion and I updated her on the health sagas that'd unfolded while I was off in LA, or Istanbul, or laying in the sun's evil rays in Asbury Park. Most importantly and seriously, I told Dr. C about the autoimmune diabetes (type 1 is my particular kind) that had was diagnosed in 2012. My type one is brittle and dangerous, swiping years from my life expectancy with its' damage and projected damage to my organs.</span></span></div>
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<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">While things have improved since I got a Dexcom (wait, you don't know that a Dexcom is a continuous glucose monitor that checks your blood sugar every five minutes? Did you know Nick Jonas wears one all the time, even on stage and during sex? Did you know he said this corny quote about the Dexy? Does he know that he's my hero? See image!)</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiztKO-_Z0kWoIe02z34ERJd0DFuMF4xgYdxSuDSRGrH__Og7o6UQRJ07DxV6gyvSA8zpbu7VgcdO2M1nHsJaOGMPWOnBHq2STdvE21gVkzhpsc_IWG590NK9WKQVLHJTwlYq_n0k8PS-Q/s1600/Jonas+and+I+are+the+same+diabetic+probably.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="363" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiztKO-_Z0kWoIe02z34ERJd0DFuMF4xgYdxSuDSRGrH__Og7o6UQRJ07DxV6gyvSA8zpbu7VgcdO2M1nHsJaOGMPWOnBHq2STdvE21gVkzhpsc_IWG590NK9WKQVLHJTwlYq_n0k8PS-Q/s640/Jonas+and+I+are+the+same+diabetic+probably.png" width="640" /></a></div>
<span style="border: 0px; color: rgb(85 , 85 , 85); font-family: "arial"; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><img alt="Def the same kind of a diabetic" class="tl-email-image" height="343" src="https://lh5.googleusercontent.com/mEuvDDlfyY2O4I9mHI5D4naCo2Sc1L9feTnyX5DM4TvwjRjXI82r2pippGdN18Nrk-hZut0v1jKTwmYdCr-hPRR5NPfQEu0WowObznUSwY5ek_DGX1ccFujumkl4QscE6xZDzfbb" style="border: none; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; max-width: 0px; outline: none; padding: 0px; transform: rotate(0rad); vertical-align: baseline; width: 0px;" width="0" /></span><br />
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<div dir="ltr" style="border: 0px; font-family: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: rgb(85 , 85 , 85); font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"><span style="font-style: inherit;">Okay, Diabetic Jonas Coma over. My blood glucose levels have improved and continue to improve since I got Dexter, but it's still harder for me than most to maintain levels. Some of that is just the nature of the disease. Some of it is my Zootopia fruit snacks addiction. But also because I don’t </span><i>want</i><span style="font-style: inherit;"> it to be my fault, my diseases actually do work against each other, bullying one another so that my infections cause blood glucose spikes, which cause fatigue and sickness and dehydration and, in the long term, heart, skin, eye and kidney damage.</span></span></span></div>
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<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">Yikes. Yeah. Dudes, I know. It's a mess. And it's a rare kind of mess, one not easily scrubbed by a course of antibiotics or new bone marrow. I’m all about a transplant fixing some of this shit (it may work, one day…)</span></span></div>
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<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">Dr. C decided to run a gamut of genetic tests to see if she could finally pinpoint an underlying disorder that explained the strange pattern of disease (which is called, no i am not kidding with this many letters, chronic mucocutaneous candidiasis). She'd always believed that there was an underlying mutation causing the long word I said before, the lupus, type one diabetes, thyroid cancer and the T-Cell disorder that makes it impossible for my body to fight fungus. She always lamented that the test to find the mutation hadn't been invented yet. And before I left for California, she joked that I'd have to stay alive it out so I could wait her research out. Which, cool. Was hoping to.</span></span></div>
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<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">Upon our reunion, she informed me that there was another genetic test she wanted to run on me and it totally only cost 3 grand cash. But the day had arrived. They drew my precious, rare blood, and sent it off to Grey’s Anatomy and three weeks of significant studies at Seattle Children's Hospital. After confirming the test, the geneticist sent Dr. Cunningham an email, which she forwarded onto me. It turned out she was absolutely right--not only did I have the mutation, but the test to pinpoint the mutation that I have wasn't even invented when I was born. What are these scientists doing sitting on their asses all day? Jesus!</span></span></div>
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<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">Dr. C drew me a little DNA cell on the tissue paper on the exam table. I did not understand a single word of it but Google tells me the mutation basically causes my body's DNA cells to remain in an "on" position when it comes to fighting illness, cancer, or disease, thereby destroying the good antibodies alongside the bad ones. For all you geneticists, doctors, nerds, and scientists out there, here's a journal study explaining the mutation that I have. http://jem.rupress.org/content/208/8/1635.full </span></span></div>
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<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">This was a pretty significant finding and I was called back to see Dr. Cunningham-Rundles immediately. (I usually see her twice a year.) She instructed me to continue to follow-up on the symptoms that have turned my diseases from manageable to truly miserable. First, I had those bothersome abscesses in my mouth fixed by casually removing the rest of my real teeth. I also dove (and continue to dive) into appointments meant to address symptoms that have been bothering me for months. The usual good stuff like unexpected and certainly significant weight gain (can I have all your old pants), cold sweats, fevers, vomiting and nausea, and every other sort of hellish experience you can imagine. Dr. C even instructed my rheumatologist in his handling of my lupus. Her reputation, freakish brilliance and vested interest in my case made me feel immediately better. I started a physical therapy regimen for my slipped discs and narrow neural pathways in my back; I went on the right mix of blood pressure medicine (100 mg of labetalol and 20 mg of avoiding my mom when she watches Fox News); I scheduled a minor surgery for gastroparesis for the end of the month; I made an appointment to get my eyes and bladder checked because they were bothering me too; I saw a nephrologist for my kidneys; I had a full and surprisingly normal neuropsychiatric evaluation (I know, what a fool); I started a pain management routine, my doctor gave me synthetic pot...it’s been a busy summer.</span></span></div>
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<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">] was in a great hospital system in Jersey but it’s impossible to get doctors to communicate with each other and since my Jersey hospital has spottier wifi, I went with Mount Sinai. At my last follow-up with Dr. C, she insisted that only the best and the brightest fellows in her department work on my case. The Supernerds and That One Canadian, we (I) named them. And we’d have the best of the Upper East Side do the rest. The brain trust, she called it. It would start and stay at Mount Sinai but expand to doctors at the National Institutes of Health, where cases like mine, or its' kin, are seen. </span></span></div>
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<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">And so for the last few weeks, I have been in and out of the city, seeing doctors in town, staying with my brother and cousins, having an absolutely hellish and brilliant time. I'll give you a metaphor: one night after a couple of brutal appointments and sweaty, energy-sucking walks around dumb beautiful New York City, my high school best friend and current life best friend Genevieve came over to my cousin Audrey's appointment and made me laugh so hard that my muscles spasmed and I actually cried from the pain of laughing too hard. At which point I was cry/laughing “what the fuck, ha ow, my life is like a bad poem, sob, laugh, get me a pen and a Moleskin!”</span></span></div>
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<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">The appointments have been hard and scary but the family and friends and Love Interest have made it an incredible summer, significant and chockful of new information for me to understand, think about and maybe even write about. </span></span></div>
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<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">I'm doing that now.</span></span></div>
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<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">--</span></span></div>
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<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">So this is where the newsletter ends, had I finished it on Sunday night like I planned to. But on Sunday I missed a couple of calls from my dermatologist, who was casually calling to chat about my biopsies. First off: it is never a good sign when your doctor personally calls you himself to deliver test results. And on a Sunday? A Sunday of A HOLIDAY WEEKEND? You better believe I was updating my funeral playlist in between our game of phone tag. </span></span></div>
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<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">On Monday, we finally got each other on the phone and he let me know that the rash on my skin he'd biopsied--the one he and Dr. C believed to be some sort of virus--was actually fucking cancer. I was midway through screaming the f-word when he casually mentioned it wasn't melanoma. OK COOL, Dr. L. Next time maybe mention that first before I’ve already looked up the local embalmer in the goddamn phone book.</span></span></div>
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<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">I don't have melanoma but I do have squamous cell carcinoma, all over my arms and legs. It came on very quickly--I went from one biopsied benign spot back in September to an explosion of pink polka dots all over my arms and legs. I matched far too well with my pink gingham shirt to pull it off. I hate the spots and am so embarrassed of them, although a lot less so now that I know they're cancer and not some weird flat wart virus that I wasn't going to tell anyone about because I do care about not dying the f alone, you freaks. </span></span></div>
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<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">The skin cancer changes the game a bit, and I need more biopsies if I’m going to start a treatment for the genetic disorder (a low dose chemo). I also learned that my hormone levels came back a bit whacky, which made me feel sane because I have been having very strange fits of hot flashes and tremors and profound sweating (which sounds like a brag but is definitely not). My doctor here dismissed it but my doctors tested for the appropriate hormones, which came back at inappropriate levels. So while I am sort of crazy and in awe of myself for passing a four hour neuropsych eval, I feel saner knowing that the crappy way I feel is not </span><span style="border: 0px; color: #555555; font-family: "arial"; font-style: italic; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">all</span><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;"> in my head. Some of it definitely is, though.</span></span></div>
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<div dir="ltr" style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt; max-width: 600px; outline: none; padding: 0px 0px 10px; vertical-align: baseline;">
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">So, it's Friday night at 7:39, and I slept for 58 hours straight last weekend, and I'm ready to do it again. Thank you for your patience in this update. I know many of you have called me or my parents and wanted to know exactly what is or was going on, but this is really the only way I want to disseminate the information.</span></span></div>
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<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">Straight from the horse's mouth.</span></span></div>
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<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">Thanks for loving and caring, gang.</span></span></div>
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<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">Love,</span></span></div>
<span id="docs-internal-guid-11021125-1150-6f1d-b83f-d49f449d3319" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline;"><span style="border: 0px; color: #555555; font-family: "arial"; margin: 0px; max-width: 600px; outline: none; padding: 0px; vertical-align: baseline; white-space: pre-wrap;">Kelly</span></span></div>
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<tr><td class="tr-caption" style="text-align: center;">30 pound weight gain. Thanks cancer + prednisone!</td></tr>
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<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt; text-align: justify;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Three weeks ago I had my bottom teeth removed. Many have asked me why and so I will try to explain in a way that doesn’t make me look like a foul-mouthed freak (I prefer to make that impression on my own with colorful language and horrifying jokes). </span></div>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt; text-align: justify; text-indent: 36pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">One of the main components to treating lupus is the use of corticosteroids. Steroids are terrible for you, long-term. I actually wrote a bit about it for <a href="http://www.thedailybeast.com/articles/2012/04/13/inspired-by-ashley-judd-my-own-puffy-face-saga.html" target="_blank">The Daily Beast </a>a few years ago, but basically: they wreck your body while also saving it at the same time. Sound confusing? It shouldn’t because that’s what modern medicine is: a bunch of give and take, push and pull, metaphors and compromises and hopes that the outcome justifies the means. I don’t know if it has for me, yet. I am alive, though, so that’s good.</span></div>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt; text-align: justify; text-indent: 36pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Unfortunately, I am also mostly toothless. One thing that steroids do is weaken your bones. I'm seriously<a href="https://www.youtube.com/watch?v=nzBssn_l2Dg" target="_blank"> Bird Bones from Playing House</a> (watch that show, you clowns.) And teeth are bone! So they began to break away and because I have all those sexy diseases, I started to develop infections that wouldn’t heal and I ended up swollen and <a href="http://www.kelly-bergin.com/2014/03/ambien-and-antibiotics-2007.html" target="_blank">hospitalized</a>. It became painfully aware that the safe thing to do would be to remove all my teeth. </span></div>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt; text-align: justify; text-indent: 36pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Last January, before I went to California for 4 months, I had my top teeth removed. It was hellish. I bled like crazy and developed sores and ulcers over the open sockets. It was bloody, ugly, colorful. Two weeks after seven top teeth were removed, I was on the plane to California, clutching an ice pack and a bottle of Vicodin.</span><br />
<span style="font-family: "arial"; font-size: 16px; line-height: 1.8; text-indent: 36pt; white-space: pre-wrap;">I have stretched and reshaped my smile so many times over the past two years; I tried to make myself smaller, my loud mouth quieter. A difficult task. And to be in a lot of social events where I’d need, you know, <i>teeth</i>, was wrenching. I couldn’t speak freely or comfortably. I had so much to say and yet I was alienated, left out, hiding to go play with the kids who wouldn't notice how lame I'd become without teeth. </span><br />
<span style="font-family: "arial"; font-size: 16px; line-height: 1.8; text-indent: 36pt; white-space: pre-wrap;">It was always on my mind; my scarred, deviated smile. And eating out, or eating at all, was a bust. (I have survived on smoothies and oatmeal alone.)</span></div>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt; text-align: justify; text-indent: 36pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Over the summer, as I lost pretty much my entire health and woke up with completely degenerated muscles and spent time in a rehab hospital and had to learn to eat and walk and use the bathroom on my own again, my bottom teeth started to chip away. They cut the inside of my mouth. They were jagged and unfriendly to any visitors. (SORRY ABOUT THAT.) I was obsessive in my notice of the defect, but I was later told by the girl I dated for months that she hadn’t even noticed. I had gotten so damn good at hiding but I wasn’t any better and neither were the teeth. They had to come out.</span></div>
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<span id="docs-internal-guid-782b3717-104d-b026-33c2-fd56c3138550"></span></div>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt; text-align: justify; text-indent: 36pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">But first I had to travel a little bit and write and be hospitalized for more scary infections and basically scare the shit out of everyone. In early May, I was finally medically cleared for the oral surgery. And so I was sedated with the IV Valium and nitrous and the rest of my teeth were cleanly removed by someone I later realized I had grown up a block away from in Lincroft.</span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> Now it’s been 3 weeks and Dr. Gelband told me that while I’m healing two to 3 times slower than the average patient, I am good! I don’t even have to go back to Dr. G and tell him about our childhood connection and mutual Facebook friends and then apologize for creeping him out. (I KNEW I recognized him so I had to Google that shit.) On Friday, I’ll receive my lower dentures and the whole affair will be mercifully closed.</span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span class="Apple-tab-span" style="white-space: pre;"> </span></span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I have been hesitant to talk openly about this. One, it feels incredibly personal and painful, and that’s because it is. Mentally and physically, this is some of the most terrible pain I have been through. The process--from working on the teeth at NYU three years ago, to deciding to remove some, and then others, and then all-- felt infinite. And at a time in my life where I was growing into who I was and learning how I wanted to present myself to the world, I had to hide my mouth behind my hands and nod.</span><br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And frankly, it </span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>is</i></span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> embarrassing, no matter how I spin it in my mind. It makes me feel like I am going to be single and toothless forever and that no one will ever love me because I am toothless. These thoughts are ridiculous. If I end up alone, it will surely be to the stupid jokes I make or for poisoning my spouse’s family with salmonella in a rare and dangerous attempt to be domestic. In the grand scheme of things, teeth, or lack therof, are pretty low on what I look for in a person, in a mate. I want humor and ambition and creativity and smarts, most of all. I can deal with fake teeth and other baggage once I’ve checked for the more important stuff.</span><br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span class="Apple-tab-span" style="white-space: pre;"> </span></span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The thing is we all age. We all succumb to the horrors of our bodily decay. I have known this horror since I was one year old. And in recent years it has gotten so much worse, and so much more terrifying. And sometimes I don’t want to do it, and sometimes I can’t talk about it, and that only makes me feel worse.</span><br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span class="Apple-tab-span" style="white-space: pre;"> </span></span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">But I am not ashamed of myself, or my body. I am strong. I have fought off things people don’t usually survive and while my smile may be gummier (actually, it’ll look better than ever), I am buoyed by the wonderful things in my life. Sometimes I’m even inspired by myself, because in the midst of the bloody gauze and the deep shame, I found humor every day. I found strength and love and I grasped onto it and I did not let go.</span><br />
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span class="Apple-tab-span" style="white-space: pre;"> </span></span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">My teeth are goners. But my smile will never go away. </span><br />
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<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinQ9EXJQMx36PsECrTiOUk46a7llnrKvMvIrUtYkMCdqZQitBOpEp2jdAUstMYVj8lgeL62L_bzbMW0gU7ZEddG4UJeIkV6DInlEvPNun1hKd_ut6RYaPymZq4EG0rzdjpCcFMJQoGw8Y/s1600/13312803_10100244409922672_1165380629098324485_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="397" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinQ9EXJQMx36PsECrTiOUk46a7llnrKvMvIrUtYkMCdqZQitBOpEp2jdAUstMYVj8lgeL62L_bzbMW0gU7ZEddG4UJeIkV6DInlEvPNun1hKd_ut6RYaPymZq4EG0rzdjpCcFMJQoGw8Y/s400/13312803_10100244409922672_1165380629098324485_n.jpg" width="400" /></a></span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: large; vertical-align: baseline; white-space: pre-wrap;">Thank you for all your love and support--the books, the care packages, the notes and cards and text messages. I hear a lot about how terrible and tough my life is and sometimes I believe it and then I remember that people love me and I love them and I have the cutest fucking nieces in the world and I know I will be okay.</span></div>
KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com5tag:blogger.com,1999:blog-9042684989870334112.post-71344208398016625602016-04-12T22:08:00.000-04:002016-04-15T14:30:54.378-04:00Coming Out (of the Quarantine)<br>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Time slows considerably when the days are aimless and the lights fluorescent, the only activity punctuated by the rounds of the medical team. I wake up and the sun is not out, not yet; there is only the nurse’s aide, smiling at me, talking about her night, all while I am slack-jawed, barely conscious or amiable after only a couple hours of sleep. She takes my blood pressure and sticks a thermometer in my mouth. The pulse ox is slipped onto a finger while blood is pushed from another callous, unwilling, unwanting fingertip. The machines beep at different times, a cacophony of sound and stimulation that wakes me for good. Beep, beep. The vitals are taken, the numbers are jotted down.</span></div>
<b id="docs-internal-guid-1fd651f7-0d60-008c-1838-c557a53a8e9e" style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The nurse comes to administer pills and insulin. To change the IV drip. To hang a bang of antibiotics on the pole and watch it drip, satisfyingly, into my veins. I taste the saline flush in the back of my mouth. I don’t know the body enough to know how this works; I only know the taste is satisfying, perhaps queuing me up for a push of IV painkillers. This does not come, though. I am not in pain enough for that; I could push it, ask, and sometimes I do, but I don’t need them. What I want is their ability to crush this time into a cube, something I could pocket and look at later, weeks later, when I was home and finally awake.</span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I wait for breakfast, I wait for the nurse to come correct my insulin dose, I doze off. I wake up to people touching my body; to me, half asleep, giving one word answers to medical questions that require paragraphs of explanations. This helps nobody. My infections are serious and deadly and it is only luck that has saved me. After lunch they tell me this. At dinner I push food around my plate and wait for the Xanax to put me to sleep.</span></div>
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<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">After ten days I am released. I feel no different from when I was admitted except I am delirious with sleep deprivation, so actually, everything feels different. I arrive home on a Thursday and bolstered by steroids and the six-hour IV antibiotics, my sleep does not come. It arrives in short bursts; a ten minute silence is followed by fifteen straight hours of staring at my phone, not understanding logic, unable to process the dozens of articles I am reading. My younger brother tells me, days later, that I tried to drive off to get candy; I don’t remember this, or fighting him for the keys, or telling him I thought I was going to fall down the steps and die.</span></div>
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<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">One sleepless morning, I leave the house while my parents sleep. I pull on snow pants and boots and the magic of light rising over snow crystallizes before me. Hello, earth. I walk down the path, intending to make my way across the street and to the lake that lies there but instead I slip. I fall, hard. My head smacks back against the pavement and I see constellations in my vision. FUCK. I do not scream or rise in anger. I lie there, the headache quickly filling my head, the pain like boiling hot water aching to escape through my eyeballs. I debate calling my dad. I understand he will find me out here, prone, his nearly 30 year old daughter flat on the pavement, and I decide the image of that might be too much for him to bear. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">No, I realize. It’s too much for me to bear.</span></div>
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<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Six months prior, I lost my ability to walk. It had began with falling hard, like this. First up. Then down. I was weakened. I could walk. Then I could not. I held onto my mother and the wall at the neurologist’s office. He admitted me twelve hours later, thinking it was a degenerative neurological disease. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I had just survived a systemic crisis in the ICU in UCLA; now I was home, recovering, improving, across the country. I was supposed to be walking forward and then back, eventually, onto that plane, to graduate school and a new city.</span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Instead I spent four days inpatient. This time I got all the drugs I wanted. They scanned my spinal cord and brain and did not find nothing, but did not find enough to conclusively agree on one diagnosis. I was relieved, then confused, but mostly stoned. I was so stoned. I understood IV drug users. The way the morphine floated into my veins, the first couple seconds of feeling, were the greatest of my life. An absence of the physical pain usually delivered by lupus and a wrecked body. I didn’t need half as much as I got and yet I kept asking for more.</span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">They moved me to an inpatient rehab center where nobody was dying, but nobody was young. I was the youngest patient by miles; a distinction I’m used to but thought I was running out of holding. On the inside, the IV pain meds stopped and so the withdrawal came in, strong and swift. The headaches, the lifelessness, the depression so acute I could barely swallow without first considering if hey, maybe I should die first. </span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">On the inside, I spent three hours a day in therapy, trying to relearn how to lift my hands over my head. How to use the toilet by myself; first how to actually do it, and then how to gain enough points with the staff that I was cleared, medically, to take myself to the bathroom. This was the greatest injustice (besides the food). I had to pee, often, but this required the help of a nurse or an aide, and it required pushing the call button, which woke my 87 year old roommate, Margo, and generally annoyed everyone. It was so banal, the most banal of banalities, and yet it caused such a fuss. I couldn’t believe the melee, and it happened every time. After a few days, I started sneaking off, as surreptitiously as one can be in a wheelchair, to the bathroom. But even with the modified toilet, the extra arms and extensions, it was so, so hard. It felt like the most physically exhausting thing I’d ever done on my own, and I wasn’t a stranger to athleticism. I had run races and played long games of basketball. I’d thrown up from running. But this exhausted me like nothing else.</span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Downstairs, away from my bathroom, in the depressing gym full of resistance bands and 2 pound hand weights, my relative youth shone. My personality came back; I stopped sleeping through activities and social worker interviews and got to actual work recovering. I Instagrammed it and I thought I grasped the surreality of my friends’ trips to the Hamptons and my summer at the Jersey Shore inpatient rehab hospital. I didn’t, then. I was merely surviving, with my pregnant sister shipping my nearly 3 year old niece to come see me every few days. Sadie decorated my corner of the room with stuff my sister let her pick out from the dollar store. A Hawaiian luau dancer hung above my band and heart stamped duct tape coated my computer and wheelchair. </span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I got back to feeling; feeling in my extremities returned, feelings in my brain, patched over by pain pills and Xanax, lit up again. I set simple goals and I met them. And then I tried to put on my shorts by myself and fell out of bed. A report was written. A fall risk bracelet, slapped on my wrist. I walked around the gym a week in and all the old people cheered. The therapists became friends. We decided to try the stairs. I fell. Another report was written. I hid my tears but my red face told the truth. My favorite physical therapist let me sit on the steps, like an inconsolable child, while I gathered all the literal and metaphorical strength in the world to get up to sit back down again. We would not try again for a few days.</span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">One day, ten days in, I had a guest pass to leave for a few hours to go home and see family from out of state. Family I only saw once a year. It was arranged for me to do therapy in the morning with my mother, a nurse, there, and then drive home with her for a few hours. I had a travel wheelchair and help ready. That morning, I had an excellent session with the favorite physical therapist that I now had a schoolgirl crush on. I was showing off, making everyone laugh, feeling taller than I was, stronger than I was. The morning was just about finished when we decided to take a walk using my walker. My mom and my crushed-on PT stood beside me, chatting about my release in a few days time as I joked in the middle and strolled as if I hadn’t just worked my ass off to do so. We were headed for the elevator when I fell, mid-sentence, as quick as thunder.</span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">A few trainers ran out of the gym and into the hallway. I could not stop crying. I knew they would revoke my day pass. I knew this would get Stacy in trouble and I’d already gotten everyone in trouble with all of my stupid falls. Stupid, stupid falls. I lay there limp as they guided me back into my wheelchair and back upstairs into my room. The social workers came. And the doctors who wouldn’t sign off on my leaving for one hour, two hours, three. I cursed and cried and raged. My mom begged me not to do the thing that I did which was to sign out of the inpatient hospital abruptly and strongly AMA: against medical advice. </span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">To her credit, she supported me. I was to be discharged three days later anyway, Medicare having declared itself tired of me and my costly hospitalizations. They would not cover more inpatient care and so I had to leave after the weekend. What difference did it really make, I thought. My therapists came upstairs as they heard; one pleaded with me to stay, but Stacy just hugged me goodbye and told me to visit. I tried to make jokes but my voice was dead, tired, over it, the last straw drawn. This was not the triumphant exit I planned. This was not the goodbye I’d envisioned. With my Rocky moment dead and buried, I let my parents help me into the car and I slip away.</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">--</span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And now it was winter again. I had spent all of August and September strengthening my muscles. I fell, so many times. On driveways and in patches of gravel and on the sand, alone, beach chair banging against my chest as the others on the beach looked at me. I grew accustomed to the patches of my body turned black and blue. My legs gave out with force and precision, knocking me flat on my back. At the time, I’d compared it to being hit from behind the knees with a cane. Or slipping on black ice.</span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The ice I was laying on was not black. It was just slick and I was just tired. I’d been in bed for nearly six weeks now and nothing was as strong as it was. I had no idea if I was as bad as I had been right before I lost it all, and I was terrified it was going to happen again.</span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Haltingly, I sat up and rubbed my head. The sky finally broke open in front of me, like the yolk in the eggs my parents had been forcing me to eat. I wasn’t hungry or happy or sad. I just wanted to take a nice picture of the sunrise. I got to my feet and traversed the sidewalk with my hand out, as if to steady me. </span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I mourned the last year of my life, nearly all of it consumed to illness.</span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">My life was not fitting into the trajectory I had dreamed about. In fact, it felt more and more like it was flying further and further away. Parts of me broke off, parts of me hardened, parts of me opened more to love and to who I was. Two weeks after I got home from rehab, I came out as bisexual to my parents. And as I grappled with this long-hinted at, long-thought about discovery, I strengthened. I flourished in work and a new relationship. And yet it was all short-lived, all terminal. It ended as I landed back in New York, fresh from 8 days abroad, exhausted, bone-tired, and invariably open to the two bacteria that invaded my bloodstream, that spiked the fevers, that caused the hospitalization, that led to the insomnia, that ended here with me, struggling to walk up the path, back into bed. </span></div>
<b style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.7999999999999998; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Had I really lost another year? Were these years that I kept referring to as lost really lost? No, I thought. They contained great beauty and triumph. I’d seen my first niece take her first breath; I walked through mosques in Istanbul three months after rehab. I had experience, and love, and heartbreak and literature. It was all so painful and beautiful. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I slipped into the house unnoticed at dawn. My room, thought to be temporary six months ago, lit with the colors of the day, now fully realized. I fell onto my old flannel sheets and finally fell asleep.</span></div>
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KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com3tag:blogger.com,1999:blog-9042684989870334112.post-32555589823683260112016-01-31T14:53:00.001-05:002016-01-31T14:53:43.861-05:00So what now?<span style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; font-size: 19px; text-decoration: -webkit-letterpress;">IMPORTANT HEALTH UPDATE!</span><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; font-size: 19px; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; font-size: 19px; text-decoration: -webkit-letterpress;">So! I am still inpatient and will remain so until a procedure is done to put a PICC line (a port-type thing that brings medicine directly into your veins.) I should be released by Wednesday, but with the following MAJOR caveats.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; font-size: 19px; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; font-size: 19px; text-decoration: -webkit-letterpress;">I will remain on intravenous antibiotics, given through the PICC line, until the end of February, depending on my blood work. I'll get two infusions a day, 12 hours apart. My mom will administer it and I will learn to as well. <div><div><br></div><div>I had plans to travel and move but for now, I will be moving back in the apartment above my detached garage. I turn 30 midway through treatment and am looking into placing tequila directly into my tube.</div><div><br></div><div>I'm on a patch for the pain for the time being. I can walk and play with the kids and push a stroller but I can't work out in the gym or any place crawling with bacteria and mold. I should be in a bubble! </div><div><br></div><div>Important to note: I am <b><i>NOT</i></b> contagious and your kids probably won't get me sick, unless they sneeze directly into my bloodstream. Still, please avoid me if you don't believe in vaccinating yourself or your kids. (Also please vaccinate yourself and your kids.)<div><div><br></div><div><span style="background-color: rgba(255, 255, 255, 0);">This infection (double whammy of staph and strep) should have killed me and would have if I hadn't heeded my friend Bones' advice and went to the ER. The origin of the infection is still unknown but my major organs seem to have missed any damage, so yay. </span>I am really lucky to have caught it in time, and although this recovery will SUCK, I know it could've been so much worse. </div><div><br></div><div>Thank you for your love, support, and emojis. I should be released from the hospital by Wednesday. ❤️💙</div></div></div></div></div>KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com3tag:blogger.com,1999:blog-9042684989870334112.post-59516059059385748602016-01-30T18:05:00.001-05:002016-01-30T18:19:15.460-05:00Ways I Have Annoyed My Nurses, Part One<div>
<span style="color: #484e5c; font-family: , "blinkmacsystemfont" , "segoe ui" , "roboto" , "oxygen" , "ubuntu" , "cantarell" , "fira sans" , "droid sans" , "helvetica neue" , sans-serif;"><span style="font-family: Verdana, sans-serif; line-height: 16px;">I have new respect for the position, and you should too, as I am the Patient from Hell.</span></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsnfTMZXUvoO4IMCnBprZrd-JUOBMyFeeir408hx1jQWIBK8MOPJqqnLlwzkUShgTMhqZU9Bs2g4k5vrT7dJTxv0a29L5MCZ4Q6rCj6ZMCZpgxOLJczJv2F569PgL0SMULMauNNlL40bI/s1600/12646877_10100205471675232_4712165303297207118_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="color: black; font-family: Verdana, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsnfTMZXUvoO4IMCnBprZrd-JUOBMyFeeir408hx1jQWIBK8MOPJqqnLlwzkUShgTMhqZU9Bs2g4k5vrT7dJTxv0a29L5MCZ4Q6rCj6ZMCZpgxOLJczJv2F569PgL0SMULMauNNlL40bI/s320/12646877_10100205471675232_4712165303297207118_o.jpg" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif; font-size: small;">Yet I look so innocent...</span></td></tr>
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<span style="color: #484e5c; font-family: , "blinkmacsystemfont" , "segoe ui" , "roboto" , "oxygen" , "ubuntu" , "cantarell" , "fira sans" , "droid sans" , "helvetica neue" , sans-serif;"><span style="font-family: Verdana, sans-serif; line-height: 16px;"><br /></span></span></div>
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<span style="font-family: Verdana, sans-serif;">Reached over my IV pole to get the pretzels I accidentally threw out, leading to the IV pole crashing to the floor and everyone thinking I'd fallen out of bed and died</span></div>
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<span style="font-family: Verdana, sans-serif;">Tried to follow them to a code blue because I really want to go to med school</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVay__BzK8JHz9kZVzUbNmQvzBOVjo2005G_I9jmSf2z86vPZtvZKDijd5oUPCQi0uQjQN9A_8LKfelGP-KbOA2og1gvhEz23NsgimsT-9Jz31vDgW5kJFkDb2gMUS3Xca2INVcvSYRgU/s1600/ER+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: Verdana, sans-serif;"><img border="0" height="244" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVay__BzK8JHz9kZVzUbNmQvzBOVjo2005G_I9jmSf2z86vPZtvZKDijd5oUPCQi0uQjQN9A_8LKfelGP-KbOA2og1gvhEz23NsgimsT-9Jz31vDgW5kJFkDb2gMUS3Xca2INVcvSYRgU/s320/ER+1.jpg" width="320" /></span></a></div>
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<div class="description linkify" style="box-sizing: border-box; padding-top: 8px;">
<span style="font-family: Verdana, sans-serif;">I've watched <i>way</i> too many episodes of ER. I feel like I could help!</span></div>
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<span style="font-family: Verdana, sans-serif;">Ask them to braid my hair because they looked bored</span></div>
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<span style="font-family: Verdana, sans-serif;">I dream of an enchanting fishtail braid, but my dreams have died.</span></div>
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<span style="font-family: Verdana, sans-serif;">Asked for ice and then immediately spilled it on the aide's shoes.</span></div>
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<span style="font-family: Verdana, sans-serif;">Is it too late now to say sorrrrry?</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnGxnW6oe_Ad-BXB8YOQxEJyiuBHwE93rtq3nAluLzTQNo1rUAe-fLxMTcVU-1DD0m53tidVNeHXrHfco1CruDrjRVaHR0vfCVeU48VyB6R4U79L9FIxV2BxNIf5m6AvK94hvmJXHZxKI/s1600/biebs+sorry.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: Verdana, sans-serif;"><img border="0" height="218" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnGxnW6oe_Ad-BXB8YOQxEJyiuBHwE93rtq3nAluLzTQNo1rUAe-fLxMTcVU-1DD0m53tidVNeHXrHfco1CruDrjRVaHR0vfCVeU48VyB6R4U79L9FIxV2BxNIf5m6AvK94hvmJXHZxKI/s320/biebs+sorry.png" width="320" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">Escaped my room and went to the gift shop to buy magazines and salt & vinegar chips</span></div>
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<span style="font-family: Verdana, sans-serif;">Tried to pay for pretzels in the vending machine with Icelandic money and almost broke it</span><br />
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<span style="font-family: Verdana, sans-serif;">My nurse lent me a dollar fifty.</span></div>
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<span style="font-family: Verdana, sans-serif;">Blasted D12's Blue and Yellow pills after getting morphine</span></div>
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<span style="font-family: Verdana, sans-serif;">Horrifying video TK</span></div>
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<span style="font-family: Verdana, sans-serif;">Continued to survive.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0UiuTKUn0bNrC9q6AgqY1F9nD1TgNry0Cznuau6oTbdPbefz6xhtVhO0tKJb-b4DjsVM9X3eAQURFhtm4AT8x8YkYEiebZW-BPJzjRLVPL31a__tidvGj3Gn3PyeSKDzo5t3P8S8qBOU/s1600/brush.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: Verdana, sans-serif;"><img border="0" height="195" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0UiuTKUn0bNrC9q6AgqY1F9nD1TgNry0Cznuau6oTbdPbefz6xhtVhO0tKJb-b4DjsVM9X3eAQURFhtm4AT8x8YkYEiebZW-BPJzjRLVPL31a__tidvGj3Gn3PyeSKDzo5t3P8S8qBOU/s400/brush.gif" width="400" /></span></a></div>
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<li class="item" style="border-bottom-style: none; box-sizing: border-box; margin: 15px 0px 15px 30px; padding: 0px 30px 15px 0px;"><span style="line-height: 1.2em;"><span style="font-family: Verdana, sans-serif;">Yelled "Nine lives, bitches!" after a gaggle of nurses and doctors outside my door remarked upon my survival of two dangerous blood infections. I'm basically Leonardo DiCaprio in The Revenant, NOT TITANIC. (Wuss.)</span></span></li>
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<span style="font-family: Verdana, sans-serif;"><span style="margin-left: 1em; margin-right: 1em;"></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbiRAUMMwtfqBuC9A8uBFen23PNGMYDy6vWu9CjIx6eiLtAuGv_gYjd6O9JQXa8kzLWgBH4GgH_89MpI_hZMF1NfDqvifRdX3XXHYKFa091Cjjr_2_a-bRJrQPIbgq-UmIhbZlWlhqnzo/s1600/nin+lives.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="247" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbiRAUMMwtfqBuC9A8uBFen23PNGMYDy6vWu9CjIx6eiLtAuGv_gYjd6O9JQXa8kzLWgBH4GgH_89MpI_hZMF1NfDqvifRdX3XXHYKFa091Cjjr_2_a-bRJrQPIbgq-UmIhbZlWlhqnzo/s400/nin+lives.jpg" width="400" /></a></span></div>
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<span style="font-family: Verdana, sans-serif;">Wish the ladies of Mehandru 5 luck, as I am definitely here until at least Monday. And please, send them some flowers on my behalf. </span></div>
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<span style="font-family: Verdana, sans-serif;">Bergin OUT.</span></div>
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} catch(err) {}</script>KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com4tag:blogger.com,1999:blog-9042684989870334112.post-70608300274119626492016-01-28T04:58:00.001-05:002016-01-28T08:14:06.557-05:00Streptococcus? More like JERKOCOCCOUS!<span style="font-family: "times" , "times new roman" , serif; font-size: large;">Hi guys. It's 4:30 am here on the East Coast, and I am reporting to you live from Jersey Shore University Medical Center in Neptune, NJ, home of questionable meals and workplace for the hot young nurses of Monmouth County.</span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span><span style="font-family: "times" , "times new roman" , serif; font-size: large;">It's been like five minutes since I made my 2016 resolution not to die this year and I've already almost broken it, goddammit. </span><span style="font-family: "times" , "times new roman" , serif; font-size: large;">I'd assumed once I stopped eating an average of 9-14 bagels a week, my body would recover.</span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span><span style="font-family: "times" , "times new roman" , serif; font-size: large;">Unfortunately this turns out not to be the case. Instead, I am battling a serious bacterial infection, which is only cool for its' novelty. (As in, I haven't had one in months!) I guess my body knew I was bored of my usual hospitalizations for lupus and diabetes and decided to throw me off a bit.</span><span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span><span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">Instead of my usual staph or MRSA, I have an infection called streptococcus in my blood stream. Bacteremia. This is the bacteria that usually just causes strep throat. But not for me. Because I don't do things half-ass. (Unless those things are homework, working out, or writing.)</span><span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span><span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">My body goes BIG when it comes to infection. So the streptococcus bacteria is floating around in the old bod, like a murderer on a lazy raft in swim trunks, flowing through the veins of MY LIFE while I desperately cling to my IV pole as if it's the last life preserver on the planet. </span><span style="font-family: "times" , "times new roman" , serif; font-size: large;">(Seriously. That's my vision of my infection. Just floating through the Runaway Rapids waterpark of my broken body. WATER SOOTHES ME, K?)</span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span><span style="font-family: "times" , "times new roman" , serif; font-size: large;">Here's what's going on, so I don't have to repeat this to relatives or friends or the press, or President Obama, should he become transfixed with my story of survival and want to hear more about it. Sorry, B. You gonna have to read this shit like everybody else.</span><br />
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;">So, I have the aforementioned streptococcus in my blood, which is dangerous AF.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU8mxO71IJYzzNGr_eu-rmtYFpjZDTGEMzVFNyGYYuRPt_fnRQ4u-WdnKzepoSG2Au1iUnA6BTPgQSOraIVcJFkkwgQY-RgeglA5buf0HEvqflbzTqwQoWnn5MTaoNUJV-bdfK1wX7gHk/s1600/ensen.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: "times" , "times new roman" , serif; font-size: large;"><img border="0" height="205" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU8mxO71IJYzzNGr_eu-rmtYFpjZDTGEMzVFNyGYYuRPt_fnRQ4u-WdnKzepoSG2Au1iUnA6BTPgQSOraIVcJFkkwgQY-RgeglA5buf0HEvqflbzTqwQoWnn5MTaoNUJV-bdfK1wX7gHk/s320/ensen.jpg" width="320" /></span></a></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;">My mom helpfully told me that strep in the blood from pneumonia is what killed Jim Henson! Thanks, Mom! If Kermit's dad can bite it from this, how do I stand a chance? And what will be my legacy? Dumb Instagram photos of dumb nature with terrible hashtags? UGH.</span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I almost didn't come in to the ER because of laziness and hatred of leaving my bed, but I had a terrible feeling that I was sicker than anyone thought, including my doctor.</span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I'd been experiencing high blood pressure and heart rate, along with four weeks of fever. My fake doctor, a 4th year med student and one of my best friends from First Descents, threatened to kick my ass unless I went in. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgif8nkKjSbS2A7b5eWhhNnfX9gf83ZH4VAzRH8dXtHlr1mcqnpNncayP1sLTKszAjaw1PxzEOTvsfYb_ezb_QOLsRDGM-RPcVjp9RLCfH14IiWVd0MoQPKmAz5DIocvmZJ4ye7krk2LsI/s1600/11210494_10100139470392332_397646315575003236_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="color: black; font-family: "times" , "times new roman" , serif; font-size: large;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgif8nkKjSbS2A7b5eWhhNnfX9gf83ZH4VAzRH8dXtHlr1mcqnpNncayP1sLTKszAjaw1PxzEOTvsfYb_ezb_QOLsRDGM-RPcVjp9RLCfH14IiWVd0MoQPKmAz5DIocvmZJ4ye7krk2LsI/s320/11210494_10100139470392332_397646315575003236_n.jpg" width="240" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "times" , "times new roman" , serif; font-size: large;">She legit saved my life. Dammit, now I owe her something!</span></td></tr>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I was OK when I got in, but then the blood cultures showed bacterium in my blood stream. <span style="line-height: 1.2em;">I immediately googled it to find out that the type of strep I have is life-treatening. Group G is also responsible for those flesh-eating deaths, you know? The horror stories you hear about on the evening news and read about on Web MD at 4 am in a panic? No?</span></span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I felt very reassured after Googling it. </span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;">The infectious disease doctors let me know that I could be here for 7-10 days, and on intravenous antiobiotics for 4-10 weeks if the virus has gone to my heart or done damage to any other major organs.</span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;">When told this, I had a bit of a fit--by which I mean I sighed heavily and rolled my eyes and told them I have Hamilton tickets. <b>Nothing</b> is coming in between me and Hamilton. Even if I have to bring a visiting nurse with me to the Rodgers theater, I AM SEEING HAMILTON.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuDGnfz5tkFz6luObAbyR_71XMB-SeahmVqNwgYKAgsrNOm7xYAafjonLmHN8HaFJxxLIyPaEMqBk6Hx02rysw36ukmPypAneedjSYKjZKOvJ4kigAis7fNWsVcQPohYuMmlCW62J22mw/s1600/Hamilton_Playbill_Cover.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: "times" , "times new roman" , serif; font-size: large;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuDGnfz5tkFz6luObAbyR_71XMB-SeahmVqNwgYKAgsrNOm7xYAafjonLmHN8HaFJxxLIyPaEMqBk6Hx02rysw36ukmPypAneedjSYKjZKOvJ4kigAis7fNWsVcQPohYuMmlCW62J22mw/s320/Hamilton_Playbill_Cover.jpg" width="204" /></span></a></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;">The team is currently scouring my body for a source of infection, which means I've been felt up more in the past two days than in the past two months. And no, guys. You cannot trade lives with me.</span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="line-height: 1.2em;">The source of the infection remains unclear and </span><span style="line-height: 1.2em;">I am currently undergoing a battery of tests to see what could be causing it. </span></span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;">One possible explanation is the Harry Potter tattoo I got in London. I pray that this is not true as it will give my mother even more ammo in her fight against my tattoos. Plus Harry would never do me dirty like that.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghsf6C7dtpBWAvWHqa40Hq8B9HANHPQjz4uqK4oitnzA7LnEAHzMTKnop93JOOnvCMOrepGr18Vz3-MvABidPZSN8T-fNCh7GfWD_wQRjyP7ZDLdFUEmyV1ZoZhVsOn_TppFaLk-ol7qg/s1600/IMG_3365.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: "times" , "times new roman" , serif; font-size: large;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghsf6C7dtpBWAvWHqa40Hq8B9HANHPQjz4uqK4oitnzA7LnEAHzMTKnop93JOOnvCMOrepGr18Vz3-MvABidPZSN8T-fNCh7GfWD_wQRjyP7ZDLdFUEmyV1ZoZhVsOn_TppFaLk-ol7qg/s320/IMG_3365.JPG" width="240" /></span></a></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="line-height: 21.6px;">So that is where we stand as of right now. I hope to know more soon and shall update all six of you as promised.</span></span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="line-height: 21.6px;">Thank you, as always, for your love and support as I attempt to survive a week in the hospital without painkillers.</span></span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="line-height: 21.6px;"><br /></span></span></div>
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<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><span style="line-height: 21.6px;">Love,<br />Kelly</span></span></div>
KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com2tag:blogger.com,1999:blog-9042684989870334112.post-68053084561920401692015-12-30T06:10:00.001-05:002015-12-30T06:11:07.559-05:00Hamilton and Survival <div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Arial, Helvetica, sans-serif;">A few days ago, maybe a week or two, I began doing the NY Times Crossword. I got my grandmother the Weekender for her birthday and I did them occasionally, but now I had downloaded the app and paid the subscription fee. I felt elated when I could fill out a Monday or Tuesday without much or any Googling. I felt like a genius the day I finished a Wednesday without help. And I felt like an ignorant fool when I got stuck, a waste of space, my lack of knowledge all my fault simply because I have chosen, in many instances, to not do the work.</span></span></div>
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<b id="docs-internal-guid-a0ccf725-f28b-3183-4809-8161d2317f13" style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></b></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Arial, Helvetica, sans-serif;">I remember the most feedback I had as a kid from teachers or parents or coaches was that I had potential that I squandered. And really, that’s the worst sort of thing that you can do. You’re stupid, fine, you don’t know any better. You’re a terrible writer, you don’t write. You can’t sing, you don’t try to be a singer. But to know I could write and chose not to, out of fear or laziness or sickness, or whatever, to squander: this is worse. We are all complicit in our shortcomings and downfalls and I was willfully rejecting the advice I had been given since the 5th grade. That is shitty.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil8d76UhZTfuuYJlbiauUzrfEr8E1sk9WtaNwpMBfczjtVsaYEePKk24ocwfUaNgMVbGL1VC3T4K4ozL8WVfTYRS5fY08CgttKVWYwMAS0AE6Il4FrCbfYljDdQntD_vog7Mj005U9V5w/s1600/11407159_10100138444907412_3034580475327996062_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil8d76UhZTfuuYJlbiauUzrfEr8E1sk9WtaNwpMBfczjtVsaYEePKk24ocwfUaNgMVbGL1VC3T4K4ozL8WVfTYRS5fY08CgttKVWYwMAS0AE6Il4FrCbfYljDdQntD_vog7Mj005U9V5w/s200/11407159_10100138444907412_3034580475327996062_n.jpg" width="200" /></span></a><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Arial, Helvetica, sans-serif;">SO much of what will be remembered about this year or the year before and for most of my twenties is the progression of my illness, the degradation of my body. I read the other day something I had written at the end of last year, wherein I posited that it could probably not get any worse. And what a foolish and arrogant thing to say. Because of course it did get worse. Because of course it got so much worse! I got so much worse!</span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="vertical-align: baseline; white-space: pre-wrap;">There was my stint in California, where I landed in the ICU, and realized all my time in California were only ever going to be stints as long as this was how my body felt and operated. If I kept being </span><span style="font-style: italic; vertical-align: baseline; white-space: pre-wrap;">me</span><span style="vertical-align: baseline; white-space: pre-wrap;">, then my life would continue to be scattershot across the continental USA: places I spent time briefly before being forced to come home to New Jersey and recover, and then to relapse and recover. It did not feel like I was building a life. It felt like I was running out of steam.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG90mZG2K1DFnk_-Ca91dPHig1_8yq2c8RCAM54Ie4TnUc7bPLE8tdsfKZ-Lh3UpCdmLoFbUYfTTaWual6nLZNXEESyY2QLhu1aB_7O7bTNc9Eo6Yo1M8QjZKGNI9rMfDAK2-Q8tO7caQ/s1600/11206935_10100150740951042_7454480990686678792_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG90mZG2K1DFnk_-Ca91dPHig1_8yq2c8RCAM54Ie4TnUc7bPLE8tdsfKZ-Lh3UpCdmLoFbUYfTTaWual6nLZNXEESyY2QLhu1aB_7O7bTNc9Eo6Yo1M8QjZKGNI9rMfDAK2-Q8tO7caQ/s200/11206935_10100150740951042_7454480990686678792_n.jpg" width="150" /></span></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I could not keep this engine going and then I finally faltered and fell apart in the most physical and metaphorical way possible: I was paralyzed, atrophied, broken. I fell, literally. I had so many falls, so many bruises. There was a moment when I was on the floor of my rehab hospital--this was July, not even six months ago--and I knew I had to call for help, and I knew it would be terrible, and the staff would have to write a report, and I would not be in trouble but I would </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">feel</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> in trouble, and I just lay there for a minute more, trying to steel myself and found that I had no more steel in the reserve. I could not brace myself because I had run out of ways how. And so I pressed the call button.</span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">This time of year, especially this specific week between Christmas and New Years, always feels lazy and incomplete to me. My friends are away on vacation and I am always here, watching reruns of dumb television shows in bed. I consume an insane amount of media--probably more than I had in six months prior. I am sleeping all day and reading and listening all night. I am making promises for the new year. I am trying to believe in the reset button.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitm3G-DHe01soH5Ha-LfvWrATtjjTpcHUv5PThOELqip8d3GKDDfL1Ytovpv_kMVEXum64vXL0ztHolTs2v2ddg4-wcUBnea-OjY3dCWCeh5VXOPlnhCXpXv-WlCdTANkFHfvaCZaRWP8/s1600/12391803_10100194619602872_8110801885056768167_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitm3G-DHe01soH5Ha-LfvWrATtjjTpcHUv5PThOELqip8d3GKDDfL1Ytovpv_kMVEXum64vXL0ztHolTs2v2ddg4-wcUBnea-OjY3dCWCeh5VXOPlnhCXpXv-WlCdTANkFHfvaCZaRWP8/s200/12391803_10100194619602872_8110801885056768167_n.jpg" width="150" /></span></a><span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">December always sinks me. I </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">mean</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> to look at the tree and inhale the scent before it is tossed out with the gift bags and wrapping paper and yet every year I do not. The last two Decembers I narrowly missed Christmas in the hospital, and yet being home and not sick is more depressing to me. It reminds me that there are things I could be doing that I am not. </span></span></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Arial, Helvetica, sans-serif;">I have been listening to the Hamilton soundtrack and reading everything about Alexander Hamilton and Lin-Manuel Miranda. And for both of these men, their eerie sort of premonition and feeling about an early death motivates them. (Read the New Yorker profile of Miranda for more on this. He thought he was going to die before his first play opened on Broadway.) This inspires me as much as it confounds me about my own motivations or lack thereof. If I am dodging death and illness, why don’t I work on things when I am not in the hospital? Why am I not writing the stories I want to write? </span></span></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Arial, Helvetica, sans-serif;">And it’s because that other illness that plagues me, the deep depression, comes and finds me as soon as the adrenaline of surviving has left me. So much of depression has to do with one refrain running through your brain: what would happen if I died? Would death be so bad? I wish I were dead. Maybe I’ll die soon.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsa46JeBmgAWBLaKxgSg7wQeI36wQxBTON1G-xSwDRnmcCytdLOl0qliJ3Sh4ybg423j_v6h5upxuxhDDPAoaddl1UpwCj-zO5XqKYORGG0v_5nToFINtdz5QfWNw7IzwilhFr1NXANAE/s1600/11921607_10100166858850642_6358628582698282359_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsa46JeBmgAWBLaKxgSg7wQeI36wQxBTON1G-xSwDRnmcCytdLOl0qliJ3Sh4ybg423j_v6h5upxuxhDDPAoaddl1UpwCj-zO5XqKYORGG0v_5nToFINtdz5QfWNw7IzwilhFr1NXANAE/s200/11921607_10100166858850642_6358628582698282359_n.jpg" width="160" /></span></a><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Arial, Helvetica, sans-serif;"><br />At least this is the refrain that runs through mine as soon as I cut the hospital bracelet off. A slackening sets in. All the color is out of the balloons and I’m left breathing the dead helium floating in the room. Technically, yes, I need to rest. I am exhausted from the suffering and pain and illness but more I am tired of the come down from painkillers, the body unfolding itself into another barely pulled off survival. I can’t write, and sometimes I can’t read. I don’t listen to music and I don’t see movies. I can only sit through television shows that don’t challenge me. I can’t comprehend anything new; I cannot get out of bed. </span></span></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Arial, Helvetica, sans-serif;">I am living and yet it seem so much harder with each year. The traumas build up, stack in my brain like debris and I cannot shake them. I worry that they will tumble to the floor and I will finally cave in. But writing to me is survival. It is the only thing that will fill me out and up and I think that for this end of the year post, a thing I was sure i would be unable to write, I have to thank the Hamilton soundtrack and freestyle rap battles on YouTube and the elasticity of the language that I love to play with. This year is done, it is over, I have survived and I will endure another. I know I will. I do not want to die.</span></span></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Arial, Helvetica, sans-serif;">Recently a friend asked me if I am discouraged by another year of trying to fly and finding that I only became paralyzed more. I wondered if that is how everyone sees my life, as pitiful a narrative as can be. Even I do not feel that badly for myself. (OK, maybe sometimes.) There were as many beautiful moments this year as bad ones, and I’m going to try to remember the beautiful ones a lot more. Rooftop breakfasts in Istanbul, a new niece, shiny and red, my West Coast girls, the California sunsets, the first swim I could take in the ocean after I learned to walk again.</span></span></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: Arial, Helvetica, sans-serif;">It could be worse. It can get worse. I learned that, this year. </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAf2B7gHGC_avB6Z8pjmEueC38WIKjqAxBFM2SVhPOcCszpbkS_ZHCLsmHhvvmxJ6mIyKOTOOnqTPs_yOj-tJTyK74XUBl7VeNbRIMK2BZVnQtQgF7OusCUOtZbMcy72MhGrg_TL4qEpA/s1600/12115461_10100186852213782_8021619043517290560_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" height="222" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAf2B7gHGC_avB6Z8pjmEueC38WIKjqAxBFM2SVhPOcCszpbkS_ZHCLsmHhvvmxJ6mIyKOTOOnqTPs_yOj-tJTyK74XUBl7VeNbRIMK2BZVnQtQgF7OusCUOtZbMcy72MhGrg_TL4qEpA/s400/12115461_10100186852213782_8021619043517290560_n.jpg" width="400" /></span></a></div>
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I did recently write and publish an article for Beyond Type 1, an awesome organization that my friend Sara helped found. She's doing all their graphic design stuff, so that's why it looks so awesome--SHE is awesome. I love her and her family and can't wait to get back to Friday Harbor to visit all my friends there.</div>
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Here's a link for some of my published works. Hope you enjoy!</div>
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<a href="http://beyondtype1.org/how-dka-scared-me-into-shape/" target="_blank">Beyond Type 1: How DKA Scared Me Into Shape</a></div>
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<a href="http://www.thedailybeast.com/articles/2012/04/13/inspired-by-ashley-judd-my-own-puffy-face-saga.html" target="_blank">The Daily Beast: Puffy Face Saga</a></div>
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<a href="http://www.huffingtonpost.com/kelly-bergin/" target="_blank">Everything I wrote for The Huffington Post </a></div>
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<a href="http://thoughtcatalog.com/kelly-bergin/" target="_blank">Essays I wrote for Thought Catalog</a></div>
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Alright! There we go, for now. This all reminds me of what a wallop this year has been and how eager I am to get writing again.</div>
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I took a long time off from writing when I was sick and depressed but I am ready to go. I never stopped being a writer, I just couldn't access the emotions it took for me to motivate myself to do what I do best.</div>
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I am excited to begin again.</div>
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Thanks, as always, for your love and encouragement.</div>
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KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com4tag:blogger.com,1999:blog-9042684989870334112.post-77070230057997404262015-09-21T17:44:00.000-04:002015-09-21T17:44:16.412-04:00Sadie at ThreeWhen I moved to Los Angeles in February, I cried for 8 days straight. I, who rarely sheds a tear, who basically has to watch Parenthood if I want to cry, wept. I missed my niece in a way I did not think it was possible to miss someone.<div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;">Birthday girl!<br /></td></tr>
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We'd FaceTime every few days and sometimes I'd have to get off the phone early because I was too emotional, because I missed her so damn much. And though she was barely two and a half, I know it affected her too. I'd see her get sad and refuse to say goodbye. My sister would tell me that Sadie would remark that she was sad Auntie lived in California now.</div>
<div>
<br />It got better, as things do, and the less I felt sad about it, the guiltier I felt. I hated missing her little milestones.</div>
<div>
<br /></div>
<div>
When I came home to visit in May, she was a new kid. Hypertalkative, a little bit clingier to Kristie, and so, very, very funny. Silly. She made up songs about her surroundings, about robots and superheros and princesses. She had blossomed while I was gone.</div>
<div>
<br /></div>
<div>
In July, I came back to New Jersey for good. And then my body deteriorated in a way it had not ever done before. It scared me, and it scared my family. </div>
<div>
<br /></div>
<div>
My sister started taking Sadie to visit me in the hospital. I spent most of July at two different hospitals, and Kristie, pregnant, would drive to see me. (Because she is the best.)</div>
<div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipDXwIm4gX2Jgj2vMYUhiObIiGosFYC0JTUbDQZ72VqpaCEdB9682K0DBZVLP75gfqC3N5ZuXglwhfSeCaDzWRZXkjLzf8jmmV9AQ-6rT-JDWZADxANhVdd4hb3Z9P-PA_EaUSNcRhKJ0/s1600/FullSizeRender+%25282%2529.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipDXwIm4gX2Jgj2vMYUhiObIiGosFYC0JTUbDQZ72VqpaCEdB9682K0DBZVLP75gfqC3N5ZuXglwhfSeCaDzWRZXkjLzf8jmmV9AQ-6rT-JDWZADxANhVdd4hb3Z9P-PA_EaUSNcRhKJ0/s320/FullSizeRender+%25282%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Laying on the floor with me, helping me exercise.</td></tr>
</tbody></table>
</div>
<div>
When I got home, I had work to do and Sadie was excited to help me. We set up her gymnastics mat and I got the big exercise ball and she used her volleyball. "Am I doing it right, Auntie?" she'd ask. </div>
<div>
<br /></div>
<div>
Yeah, kid. You're just fine.</div>
<div>
<br /></div>
<div>
Here's my annual love letter to my best girl.</div>
<div>
<br /></div>
<div>
--</div>
<div>
Dear Sadie,</div>
<div>
<br /></div>
<div>
Sadie, you're three now. You love school and tea sets and tools and fixing stuff. You question everything, bargain with me mercilessly over chicken nuggets, and tease me. You love New York City. You talk about New York City all the time, and you ask when we're going again, and when we can take the train, and when we can see the dinosaurs. When we went to NY in May, you whispered "This is so awesome" as we left the Museum of Natural History.</div>
<div>
<br />Dude, YOU are so awesome.</div>
<div>
<br /></div>
<div>
Thank you for insisting you help me check my blood sugar, for checking my heart beat with your toy stethoscope and beatboxing as you do so because that's what you believe hearts sound like. Thanks for only wanting to listen to music on the record player, because it makes me feel I'm doing my part to raise a music snob.</div>
<div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvyFXLVPQi-9y3criwjdLfofe0Kg53lMltCy15EUVObfZt8WSu9158UO_UIuqv_EPmDJTtMS-OTe02GgrS0YYE28WHULgFOnkshlCHJCj0Ra1QQbLQ0LjGS2LMPKZrkLcKUx6qmwbaBNA/s1600/IMG_8700.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvyFXLVPQi-9y3criwjdLfofe0Kg53lMltCy15EUVObfZt8WSu9158UO_UIuqv_EPmDJTtMS-OTe02GgrS0YYE28WHULgFOnkshlCHJCj0Ra1QQbLQ0LjGS2LMPKZrkLcKUx6qmwbaBNA/s320/IMG_8700.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ridin'</td></tr>
</tbody></table>
</div>
<div>
I don't know if you know, kid, but I was deflated this summer. I was so close to giving up. I had never had to wheel around in a wheelchair, or need help showering or going to the bathroom. (Potty buddies!) I'd never been so weak that I could not sit up without assistance. Somehow you knew how to cope with these things better than I ever could.</div>
<div>
<br /></div>
<div>
You pushed me to make my recovery into a game, and wheeling around the house with you as you giggled in my lap took my focus off of my pain. I don't think I'll ever forget your insistence on pushing my chair through the hospital hallways. I want to help Auntie, you said. And boy, did you.</div>
<div>
<br /></div>
<div>
It was during all those lonely nights in the hospital that I was worried my world would collapse around me, that everything would become colorless again. For me, you are hope. You are, like our girl Emily D said, the thing with feathers. I can't help but watch you soar, and it makes me so damn happy to see.</div>
<div>
<br /></div>
<div>
You'll always be my first niece, the first true love of my life. We're going places, kid. I'm so glad to have you along for the ride.</div>
<div>
<br /></div>
<div>
I love you forever,</div>
<div>
Auntie</div>
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KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com5tag:blogger.com,1999:blog-9042684989870334112.post-76937758961641396852015-07-23T21:18:00.000-04:002015-07-23T21:18:27.638-04:00KPB Does Rehab: God, We All Saw This Coming<div>
Wait. No.</div>
<div>
<br /></div>
I'm in the OTHER kind of rehab, the kind of place where the median age is legit 82 and my roommate was born in the NINETEEN TWENTIES.<script type="text/javascript">
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<br /></div>
<div>
I seriously assumed everyone born in the 1920's was dead. Do they have rehab for not being good at math?</div>
<div>
<br /></div>
<div>
After my fun adventures in Los Angeles, I lost all feeling in my legs and reentered the hospital because I just missed Jello too damn much. After five days of testing me for scary diseases and finding GREY MATTER ON MY BRAIN (something I haven't googled JK I'm mostly gonna be fine), I was discharged into a rehabilitation hospital to try and fix my stupid garbage body.</div>
<div>
<br /></div>
<div>
I go to therapy for three hours a day and I hate it so much I have cried six times today. My legs are amazing at being useless right now. I feel like Jason Street at the beginning of Friday Night Lights which shows how fucking dramatic I am because he was like, paralyzed forever, and I'm hopefully gonna walk out of here in ten days.</div>
<div>
<br /></div>
<div>
Ten. Days. </div>
<div>
<br /></div>
<div>
I don't want to whine but this is the WORST SUMMER EVER. I have been to the beach once. I have swam in the ocean zero. I have cried like every day.</div>
<div>
<br /></div>
<div>
And tonight for dinner I ate applesauce, which I have deemed the least scary food here. This is because it's made by Mott's. </div>
<div>
<br /></div>
<div>
Let me just say the PC stuff: I am really lucky not to be 99 and here, because I would be so pissed off they were making me walk after I had survived like 7 wars and so many presidential scandals. </div>
<div>
<br /></div>
<div>
I am also very grateful to have family and friends who want to visit this octogenarian nightmare. This place is straight up reeking of age. At night the walls whisper "Mr. A died in that bed, you know..."</div>
<div>
<br /></div>
<div>
My roommate is 87 and she tells everyone how she's gonna be 88 in October. She is really focused on making it to 88 so we're all pulling for her. We are about equal in terms of strength. We also both have dentures but I don't want to talk about it. She has terrible hearing so the TV, which is always fucking on, is on volume level 85 the entire day. I'm wearing two pairs of headphones on top of my ears right now to deal--OMG, guys, she's praying out loud right now before bedtime. I am such a jerk. </div>
<div>
<br /></div>
<div>
Anyway I actually really like Margo and I hope we become friends by the time one of us leaves, but right now I'm at the stage in my inspirational film where I am cranky and young. LifeTime will soon air The Kelly Bergin Story so keep your eyes peeled.</div>
<div>
<br /></div>
<div>
It's past 9 which is an hour past my bedtime, so I must go. I need at least 16 hours of sleep these days. Three hours of therapy will definitely take it out of you.</div>
<div>
<br /></div>
<div>
Thanks for all the support and please stop Instagramming about the beautiful weather. I wish humidity and bad hair for every one of you at the beach.</div>
<div>
<br /></div>
<div>
Love,</div>
<div>
Kelly</div>
KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com4tag:blogger.com,1999:blog-9042684989870334112.post-19855113680901686892015-07-02T15:42:00.001-04:002015-07-02T15:55:32.667-04:00July, July! You Never Seemed So Strange<i>I am so lucky to have people to tell me that it's going to be okay.</i><br />
<div>
<br /></div>
<div>
--</div>
<div>
<br /></div>
<div>
Tuesday night. I am in the car, on the New Jersey Parkway. Inexplicably, I have made it back East. </div>
<div>
<br /></div>
<div>
I sat with my parents on the flight. I can't recall the last time I flew with them; surely it has been five years or more. I looked over at them. </div>
<div>
<br /></div>
<div>
What happened?<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1EqGJ_2r4fciyL9KKzF8o06SRF-PCjhdHYNjmaq7xkr5SN5Sc0hdbxzbU0I3Zb95gNOu_7rgslgyXwqlPFVrUixb1oBT9HZ4NXVbjehnS-UMWdN_IJlHtbDUNRw9x9B9t6R6YQI3T3_4/s1600/FullSizeRender.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1EqGJ_2r4fciyL9KKzF8o06SRF-PCjhdHYNjmaq7xkr5SN5Sc0hdbxzbU0I3Zb95gNOu_7rgslgyXwqlPFVrUixb1oBT9HZ4NXVbjehnS-UMWdN_IJlHtbDUNRw9x9B9t6R6YQI3T3_4/s320/FullSizeRender.jpg" width="320" /></a></div>
</div>
<div>
<br /></div>
<div>
--</div>
<div>
<br /></div>
<div>
The nice lady pushes me through the airport. We breeze through LAX. She tells us most people don't say thank you. </div>
<div>
<br /></div>
<div>
I watch her pocket a tip from my dad as I disembark from the wheelchair.</div>
<div>
<br /></div>
<div>
--</div>
<div>
<br /></div>
<div>
The flight out to LA was long, and there was a layover in Texas. I drank a mimosa in Dallas and choked on the citrus, burning my throat. </div>
<div>
<br /></div>
<div>
I could feel my throat beginning to close but I shook it off.</div>
<div>
<br /></div>
<div>
I landed in LA. I went to an AirBnB and slept for 18 hours.</div>
<div>
<br /></div>
<div>
Claire picked me up and we went to see Jules at school. We watched her birthday celebration. She kept looking over at me and saying "you're here," her face all scrunched in a smile.</div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixhTvv5aFZAL5hxkONnqtJIVIGjoUToObW1IZRuf5i5Lrvy09CRVR8ONDKiVsyWskTCMMSLWmiNY-bH2lvw3LxwwWxQxwvsrTGXBRgBd1lnmDl3RiGgViLmiFGs_k3BDKducujYRckyT0/s1600/IMG_7861.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixhTvv5aFZAL5hxkONnqtJIVIGjoUToObW1IZRuf5i5Lrvy09CRVR8ONDKiVsyWskTCMMSLWmiNY-bH2lvw3LxwwWxQxwvsrTGXBRgBd1lnmDl3RiGgViLmiFGs_k3BDKducujYRckyT0/s400/IMG_7861.JPG" width="400" /></a></div>
<div>
The next day we saw Marine One land at the Santa Monica Airport and the girls were so excited, it was so cool. Vera told me it was better than Disneyland, which no. But it was so fun.</div>
<div>
<br /></div>
<div>
I tried to sip a Coke at lunch and faltered.</div>
<div>
<br /></div>
<div>
The girls went home and I told them I'd see them on Monday for our movie date.</div>
<div>
<br /></div>
<div>
On Friday I texted their mom and dad and said I thought I had the flu. I ordered in ginger ale and Coke. I couldn't swallow. Bones told me I was going into DKA after I threw up twice. </div>
<div>
<br /></div>
<div>
On Saturday, I climbed into a Lyft and on Saturday night, I fell asleep in an ICU bed.</div>
<div>
<br /></div>
<div>
--</div>
<div>
<br /></div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBbNl8tWFpGUFpCOrvA_0_MYsN9onq_wVGjoe7WRJbSTPjlb9fNeCdy0xSnZiz4uiSSL9f9FcWWeOf56tVHj-nhfik-DOMm4Xn1_vGWWRlPSvkOi-5ecfxNfawzgOdRZL5LtQRUMJ5B8g/s1600/IMG_8010.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBbNl8tWFpGUFpCOrvA_0_MYsN9onq_wVGjoe7WRJbSTPjlb9fNeCdy0xSnZiz4uiSSL9f9FcWWeOf56tVHj-nhfik-DOMm4Xn1_vGWWRlPSvkOi-5ecfxNfawzgOdRZL5LtQRUMJ5B8g/s200/IMG_8010.JPG" width="200" /></a>I don't remember anything else, and it's clear to me that this is perhaps for the best. I had sent some disorienting, insane texts but deleted them after I wrote them. An act of self-preservation that has driven me mad all week.</div>
<div>
<br /></div>
<div>
But I <i>was</i> mad--psychotic, actually, from a heavy dose of steroids and pain meds. I kept thinking there were pets in my room. I knew, intellectually, that my bag wasn't a cat. But I thought it might be, anyway.</div>
<div>
<br /></div>
<div>
My dreams are still confused with reality. I don't remember, I don't remember. I keep saying this. I wonder if anyone believes me.</div>
<div>
<br /></div>
<div>
I press my parents for details and they offer some and shrug. You were like this, my dad says, exaggerating a stuck-out tongue and popped-out eyes. </div>
<div>
<br /></div>
<div>
Like nothing I had ever seen before, he says.</div>
<div>
<br /></div>
<div>
--</div>
<div>
<br /></div>
<div>
I had a molar removed six days before I went inpatient. Despite my best efforts, it combined with my body's natural fungus and turned into a growth, an infection. </div>
<div>
<br /></div>
<div>
It coated my esophagus and showed up in my lungs. It began to slide over my vocal cords and threatened to close my throat, and that's when I went to the ICU.</div>
<div>
<br /></div>
<div>
This alerted my type one diabetes and I went into an extremely scary condition called diabetic ketoacidosis, which maddeningly sounds like a Mary Poppins song. (Sing it with me now...supercalifrigiKETOACDIOSIS/you can sing it too if you have the diagnosis!)</div>
<div>
<br /></div>
<div>
DKA, as it is commonly called, must be treated in the ICU with an insulin drip. I had a nurse at my bedside, checking my blood sugar (glucose) levels, to ensure I did not die. My blood was poisoned.</div>
<div>
<br /></div>
<div>
My body had totally gone to shit.</div>
<div>
<br /></div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmSWJ_7MUhxGIC1fbKB6OLRMzycsUy09bKrlIQ9cVbenpuOKp5TCFDW0UzOcm1zqDcVk_xrxSw9HL-nNzob0epreXoQjegxFkwRjVAna8B0fJixS_a6ow9tmxHNtefBM9Qob6079dY8aw/s1600/IMG_7947.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmSWJ_7MUhxGIC1fbKB6OLRMzycsUy09bKrlIQ9cVbenpuOKp5TCFDW0UzOcm1zqDcVk_xrxSw9HL-nNzob0epreXoQjegxFkwRjVAna8B0fJixS_a6ow9tmxHNtefBM9Qob6079dY8aw/s320/IMG_7947.JPG" width="240" /></a>--</div>
<div>
<br /></div>
<div>
On Jules' birthday, I thought I might be getting strep and so I went to the UCLA Urgent Care as a precaution. The doctor told me I was fine.</div>
<div>
<br /></div>
<div>
She said she couldn't see anything wrong, and that my doctor was right to take me off those antifungals in April, they were killing my liver.</div>
<div>
<br /></div>
<div>
Okay, I said. I went to Walgreens and bought Cepacol, and the storm began.</div>
<div>
<br /></div>
<div>
--</div>
<div>
<br /></div>
<div>
It's almost Friday, and the weekend is due to arrive, full of bright lights and patriotic messages and I am feeling pretty pumped about Obama's Big Week, though I remember none of it. I am so happy about #LoveWins that I'm considering getting a rainbow tattoo. </div>
<div>
<br /></div>
<div>
I am not depressed. I do not feel bloodless. I see color. </div>
<div>
<br /></div>
<div>
It's hard to swallow, and it's hard to talk. But a week ago I had suction tubes in my throat, swallowing for me. I did not speak aloud at all, and the silence made my fingertips go mad.</div>
<div>
<br /></div>
<div>
Right now I can sip ice water and chocolate pudding and ice cream. So it's okay.</div>
<div>
<br /></div>
<div>
My anxiety reached a feverish pitch last night and I broke down the way I did on the drive home from the airport, silently crying and then moaning as the tears burned my throat, still infected, only just starting to heal.</div>
<div>
<br /></div>
<div>
Why does this happen, I railed. What is the fucking point? What is the fucking POINT?</div>
<div>
<br /></div>
<div>
My anger keeps me alive. My anger keeps me questioning.</div>
<div>
<br /></div>
<div>
Someday I will know, and the resolution will be the peace I have always searched for.</div>
<div>
<br /></div>
<div>
Until then, I read and wait and recover and walk and heal and play with Sadie and think of baby names for my unborn niece and I live, quiet, assured...</div>
<div>
<br /></div>
<div>
ready.</div>
<div>
<br /></div>
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--</div>
<div>
<br /></div>
<div>
(Thank you for all your support. I appreciate it now more than ever. I love you.)</div>
<div>
<br /></div>
<div>
<br /></div>
KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com3tag:blogger.com,1999:blog-9042684989870334112.post-72149512317438846942015-04-12T19:30:00.000-04:002015-04-12T19:30:37.829-04:00Weird Shit I've Hallucinated While In The Hospital: A New, True-Life Story<i>Hi guys. I live in California now. It's great.</i><script type="text/javascript">
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<br /></div>
<div>
Okay! Update over.</div>
<div>
<br /></div>
<div>
Last week I moseyed on over to the UCLA ER in Santa Monica for a skin infection called MRSA. I've had it before, I've had my pits ripped open and drained, and I've got stupid <b>non</b> lightning-shaped scars to prove it. I love me some MRSA, man. Just a shitload of pain and then ugly scars.</div>
<div>
<br /></div>
<div>
So I headed in and one thing turned into another and now I'm on my FIFTH day here. And until last night, I hadn't slept more than two consecutive hours. Which I'd almost gotten used to what with all the small children around me, but this lack of sleep has been jarring to say the least. </div>
<div>
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<i>Sidebar: here's some tips I have for staying awake when it seems darn near impossible: 1) shake your head vigorously until one of chemically goldened curls gets caught in your eyelash and you MUST stop to look in the mirror and admire you and your natural beautiful hair (narcissism comes in handy here) </i><i>2) Drink coffee until vomiting. 3) Eat some Play-Doh; living on the edge will keep you up and excited!</i></div>
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After waking up in what I was convinced was a smoke filled hospital room, I told the doctor I thought I was going nuts. Dr. HotterThanMe shook his own beautiful mane of curls, pulled the bridge down on his top of the line Warby Park's and looked at me, "Listen, kid (ouch). You are at a dangeous level of sleep deprivation. It's THAT, not the Dilaudid. (yeah, okay). Just sleep for a couple hours and ou'll feel brand new..."</div>
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NOPE. And while I do feel slightly better today, I'd be remiss not to mention my favourite hallicanations over the past five days.</div>
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<i>1)</i> Cindy Crawford! Turns out it was just a woman. I just really wanted to see Cindy Crawford. She looks better than ever. </div>
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<i>2)</i> A huge, monstrous spider that crawled up and down my door as I peed. I was about to scream when I lunged forward to catch it and ended up picking my bare ass off the floor. The spider was but a speck of pain that Maintenance WILL be hearing about.</div>
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3) My ability to speak Spanish to my nurse. I was weirdly confident, jumping into a conversation about hombres (?) that I felt I could land a good voice too. I got three words in French before Maria gently rested my head back on the pillow and told me to be quiet now.</div>
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4) My room's painting of Mario and Luigi that turned out to just be dumb shells on a dumb beach.</div>
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5) A man from Tinder who's messages I've been ignoring. I freaked out for a moment and then he came closer and I realize wait...THAT'S DEFINITELY HIM. His job was to carry my urine to the lab all night, so I'm pretty sure that love match is over.</div>
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Excuse the typos. I haven't slept in fourteen hundrend days.</div>
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Much love for UCLA Hospital, send all gifts to Claire Bidwell Smith and sorry to everyone who's call, text, facetime, and,uh...visitor's pass that I did not resppond to.</div>
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I shall return.</div>
KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com4tag:blogger.com,1999:blog-9042684989870334112.post-42934670383114443052015-03-12T17:42:00.001-04:002015-03-12T17:42:47.790-04:00My Friend and Mentor, Lisa Adams<span id="docs-internal-guid-0059672e-0fe5-db35-66a7-d6f95f913b10"><div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">On Friday night, our friend Lisa Adams died of metastatic breast cancer. She was 45.</span></div>
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<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">Much has been said about Lisa, about how she was a warrior, about how hard she fought, and I nod my head and echo those sentiments. Lisa stood out because Lisa was a different type of cancer patient; she defied the very stereotype of a dying person, doling out inspiration and comfort by the fist.</span></div>
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<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">I say this because I think that Lisa would agree: Lisa wasn’t here to bring us comfort. Her disease and suffering did not exist to inspire us. They just existed, and she hated it as much as a mother dying of cancer should. Lisa was not prone to personal sob stories; instead she fundraised and educated us on the disease and the brutalities of metastatic breast cancer. She wasn’t writing for sympathy, or to comfort us. </span></div>
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<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">But she did bring comfort, the hope that one day we would, too, live tenaciously, live beyond what our diagnoses dictated.That we could be as strong as Lisa.</span></div>
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<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">Sometimes reading Lisa’s blogs confounded me. How could she be so steely, I wondered, so full of reserve, so full of fight. She was, at times, airtight and clinical. She was patient with her readership, knowing that they did not fully understand the world that she inhabited. Lisa explained things, gave knowledge, shared tips on how to be a better patient. And then Lisa would share a poem, or write about her children, and your heart would crack at the unfairness of losing this young mother, this beacon.</span></div>
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<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">Earlier this year, I began to emerge from a two and a half year illness that had taken me out of my busy, twentysomething life and placed me in the apartment above my parents’ garage. Throughout this time, Lisa was as close to me as she had ever been. She was always a message away from helping me, and I greedily accepted her knowledge. She answered my questions speedily. She referred me to a hematologist who helped revive my blood counts. I knew Lisa online for five years, and throughout it all, no matter what she was facing, up until this very last month, she wrote me, checking to see how </span><span style="font-family: Arial; font-size: 15px; font-style: italic; vertical-align: baseline; white-space: pre-wrap;">I</span><span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;"> was. </span></div>
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<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">I recently found the first correspondence we ever had. It was in 2009; I was holed up in NYU hospital, battling a lupus flare and the first emergence of diabetes. Through Julie Klam, she had found my blog and even as a stranger, sent me good wishes and offered advice.</span></div>
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<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">She sent me more than that over the last five years. She sent strength and beauty and delight. I loved how she loved my niece, and how she cheered me on.</span></div>
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<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">I won’t ever forget her. I won’t ever want to stop asking how she is or hear something funny that her son Tristan said. I’ll never forget how much she went through to stay alive, for as long as possible.</span></div>
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<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">And the next time I face a health obstacle and want to give up, I’ll hear Lisa in my ear, telling me to persevere. To keep going. That there is beauty outside and I must go and see it. </span><span style="font-family: Arial; font-size: 15px; line-height: 1.38; white-space: pre-wrap;"> </span></div>
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<span style="font-family: Arial; font-size: 15px; line-height: 1.38; white-space: pre-wrap;">When I recently admitted to her that I felt guilty that I had survived, and that she wouldn’t, she didn’t let me finish my sentence. She made me feel that I deserved the sunshine.</span></div>
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<span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">But she deserved it too. And God, I wish she had longer in the light. </span></div>
<br /><span style="font-family: Arial; font-size: 15px; vertical-align: baseline; white-space: pre-wrap;">Goodbye, Lisa. Thank you.</span></span><script type="text/javascript">
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<tr><td class="tr-caption" style="text-align: center;">Joe Dirt 2, Starring...</td></tr>
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<b style="font-size: xx-large;">=</b><span style="font-size: x-large;"><b> </b></span><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">A Reluctant Kelly Bergin</td></tr>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Yesterday I reclined in the oral surgeon's chair and inhaled the sweet smell of laughing gas.<script type="text/javascript">
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">The assistant inserted an IV full of Valium and Michael Jackson Drugs and soon I was out.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I remember waking up and coughing on the blood and joking about how to date with dentures: maybe my grandma will have some advice? Shit, she hasn't dated since the late 40's.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Most of the teeth on the top are gone now. My gums are bloody and swollen and I sound like Sadie when I tried to say my S's. (Her lisp is way cuter than mine.)</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">On Thursday, I'll get my new falsies, just in time for my move back to Hollywood.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">On Christmas Day, I took a Dilaudid for the wicked mouth sores that accompany lupus. I have been deservedly prescribed painkillers by pain care specialists for over two years now. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Besides the occasional Dialudid, which is similiar to morphine, I have a standing prescription for a Vicodin and Tylenol mix. Depending on how severe my pain was, I took anywhere from 1 to 4 a day.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Used long-term, these medications can cause liver failure and memory loss. And, of course, terrible addiction. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I do not believe I abused them or that I was addicted to them, but when I was in the hospital, I craved the liquid Dilaudid. And the days following a hospital release had me itchy with pain and lust for the drug.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">But I used them as a crutch; I took it to anticipate the pain, without thinking about it first. I took it thoughtlessly. I swallowed a Vicodin with my morning coffee. They never made me feel stoned; just lighter, more able.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">So on Christmas Night, I decided to quit painkillers. Cold turkey. I am bull-headed like that. I did not want to become a slave to addiction. I wanted to remember more. I wanted to sleep less and do more. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I am trying to do things with <i>purpose</i>. To think before I speak. To consider what I eat. To think more about my autoimmune diabetes and how different foods affect me. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I never took them when I drove. I didn't mix painkillers and booze. I wasn't physically addicted to them, though a different person might become addicted with that sort of dosage. But mentally, I leaned on them.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">They made my days easier. I deserved easier.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I coveted easier.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">When I went cold turkey, I had intense itching for about 36 hours and then it was done. I wanted them; I took a few when I needed to. I will not deny myself relief from extreme pain; that is ridiculous.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">But I wanted clearer days. I didn't want additional medical conditions that might arise from long term painkiller use. My decision isn't for everybody. None of my doctors encouraged me to quit. This was my decision, and mine alone.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">At the beginning of the New Year, 6 days without pills, I read my horoscope for the year. I used to laugh these off, but now I figure that more guidance, even hokey guidance, can't hurt.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I translated my horoscope, with it's rounding generalizations and usual sort of BS, into something else:</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">If the world is asking you to be brave, then <i>be brave</i>.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">On New Year's Eve, Gen and I flew out to California. And on January 3rd, we had the immense pleasure of watching Meghan and Declan get married on the beach in Santa Monica.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">It was one of the best weekends of my life. Surrounded by my second family and all my very best friends, I never felt happier.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I stayed out in LA for a week longer. I almost didn't get on the plane home.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">In Claire's kitchen, I decided to apply for graduate school. I'm getting my Master's in psychology with a focus on child studies. Depending on how quickly I get in and secure student loans, I will start in Los Angeles in either April or July.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I want to work with sick children. I want to counsel families in hospice. I want to take my experience and use it for good. I want to run a camp for sick children. I want to do something with this unfortunate knowledge I have, and I want to use it to help. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">It's been 30something days since I decided to start feeling my pain. In that time, I've taken a handful of pills for extraordinary pain.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Some days, it feels as if I have sloughed off a layer of protective skin. I feel so raw and I can be so moody, feeling this pain. The pain of the everyday, and the pain of these inflammatory diseases.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgac-_9U3BB9XeVF35vsBZX-LCuB1S8CfN4xCXnzrdX6Yw3xpa9KhyphenhyphenaJD53Dm-Ma22fMmaEKmW2riHh3Wraa4TX8KLuzpULhDMcZKntuUdx2z747mVhbHir737Ac4GH-vP66W0S0z-6djk/s1600/blogger-image--517998137.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgac-_9U3BB9XeVF35vsBZX-LCuB1S8CfN4xCXnzrdX6Yw3xpa9KhyphenhyphenaJD53Dm-Ma22fMmaEKmW2riHh3Wraa4TX8KLuzpULhDMcZKntuUdx2z747mVhbHir737Ac4GH-vP66W0S0z-6djk/s1600/blogger-image--517998137.jpg" height="320" width="240" /></span></a><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">When my knees swell, I look toward non-drug treatments. I use heat and ice. I take vitamins and probiotics. I can digest food now. I feel newer, even as the days wear on.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I move to Los Angeles in six days. I am ready to come out. I feel excited about who I am and who I will be.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I am scared. I am nervous as hell. I'm feeling everything, for the first time in forever.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">And I can't wait to feel brave.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">I don't think I could do anything without the support of my family. They push me. They believe in me.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">These last two and a half years at home have been so hard. I hadn't lived at home FT since I was 18, and then I came back at 26 for three months that turned into two plus years. I have fought and yelled and resisted. I have felt anger and rage. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggutkpmA0mqEySlliBgZ8SCQdjbz3HFwJudgJ2avONXX-akvT4g-GyOtpCxgcnudpEOzd7ij0yDnvyBKkjBtQhzNckl9EF0GAidlRjZlENoyqYdjagaVtdhWkmJJwo41lUCHtdYic2bXk/s1600/10525660_913444777502_8429157910274525493_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggutkpmA0mqEySlliBgZ8SCQdjbz3HFwJudgJ2avONXX-akvT4g-GyOtpCxgcnudpEOzd7ij0yDnvyBKkjBtQhzNckl9EF0GAidlRjZlENoyqYdjagaVtdhWkmJJwo41lUCHtdYic2bXk/s1600/10525660_913444777502_8429157910274525493_n.jpg" height="320" width="200" /></span></a><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">But now that this time is coming to an end, I can only feel gratitude. My parents took care of me. My brother runs to the store for me. My sister is my best friend in all of this. My brother-in-law shows up with Sadie when he knows I need to see her.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">And Sadie saved my life, more times than I will ever tell her. During the deepest sickness and depression I have ever known or hope to know, she was the reason I kept myself alive.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Thank you all. See you in California, where I plan to stand in the light, all day long.</span></div>
KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com8tag:blogger.com,1999:blog-9042684989870334112.post-22814835603824727372014-12-27T22:14:00.002-05:002014-12-27T22:22:13.597-05:00Hey Baby, Let the Good Times Roll<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large; text-align: start;">2014. What a mothereffer you could be. The warmest year on record except for every day I spent in Los Angeles? You brat. You KNOW how cold I get.</span></div>
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<span style="font-size: large;">But besides the usual shit, which has been documented so diligently, and perhaps maybe a bit too much, if you ask my family, this year had its' moments. And it is within me to be able to take the crazy along with the good.</span></div>
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<span style="font-size: large;">Which is good.</span></div>
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<span style="font-size: large;">Because there was a lot of fucking crazy. </span></div>
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<span style="font-size: large;">(There really was, guys.)</span></div>
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<span style="font-size: large;">So, 2014. What good hath you brought?</span></div>
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<b><span style="font-size: large;">NUMBER ONE.</span></b></div>
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<span style="font-size: large;">#dopeniece</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVpY0mySYQIy6AeJvZsq3UE5YfHyXmFL6SXZPz8LTXj9VAyJy5Pl1MdVzOIcvODuq6rDeJgaeKKPR9l7aiInPjpBbT63BBRQmploWVOwAVfSgMIvDdCuUKgB9qeap21IzeRrk6SW0ldHw/s640/blogger-image-116729276.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVpY0mySYQIy6AeJvZsq3UE5YfHyXmFL6SXZPz8LTXj9VAyJy5Pl1MdVzOIcvODuq6rDeJgaeKKPR9l7aiInPjpBbT63BBRQmploWVOwAVfSgMIvDdCuUKgB9qeap21IzeRrk6SW0ldHw/s640/blogger-image-116729276.jpg" /></span></a></div>
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<span style="font-size: large;">This fucking kid.</span></div>
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<span style="font-size: large;">Watching her become a person is probably the dopest thing I have ever seen.</span></div>
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<span style="font-size: large;">She is so funny.</span></div>
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<span style="font-size: large;">She is so full of light.</span></div>
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<span style="font-size: large;">She is so snuggly.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisQ3rErHh5DX3QWBzMR2bzLP6e7aWm9zA8OBS7ZatTU-qvrQBr6yvl2twEHmFCySQr1R1rm1U0tQpOabVifDAwe15K_s2sCOGtunEPOMrq-R9Vl7v6m6zUKy-60YnIhiFgO57tHz9VJO0/s1600/blogger-image-953876927.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisQ3rErHh5DX3QWBzMR2bzLP6e7aWm9zA8OBS7ZatTU-qvrQBr6yvl2twEHmFCySQr1R1rm1U0tQpOabVifDAwe15K_s2sCOGtunEPOMrq-R9Vl7v6m6zUKy-60YnIhiFgO57tHz9VJO0/s400/blogger-image-953876927.jpg" width="400" /></span></a></div>
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<span style="font-size: large;">She talks now. She has ideas and plans and she executes them. </span></div>
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<span style="font-size: large;">She is always making me fake hamburgers and they always taste the same, like disgusting plastic, because I pretend to eat them and inevitably taste some and I pretend to choke, and she always laughs, which we'll worry about later and give her Heimlich lessons.</span></div>
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<span style="font-size: large;"> She is confident and assured. </span></div>
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<span style="font-size: large;">She knows when to go for the laugh. </span></div>
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<span style="font-size: large;">She knows when to be pouty. (I taught her that.)</span></div>
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<span style="font-size: large;">There will never be another Christmas again where she is two, beginning to understand the wonder of the season. </span></div>
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<span style="font-size: large;">Where she rearranges the ornaments she likes and calls the tree her "Minnie tree."</span></div>
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<span style="font-size: large;">There will never be another first time in New York City. </span></div>
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<span style="font-size: large;">She fit right in. She watched everything. She felt it, and I got to be witness to her growth, to her changing, to her being.</span></div>
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<span style="font-size: large;">How could the year be so bad when I've got that?</span></div>
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<span style="font-size: large;"><b>NUMBER TWO.</b></span></div>
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<span style="font-size: large;">Time Spent in Los Angeles</span></div>
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<span style="font-size: large; margin-left: 1em; margin-right: 1em;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqmvCv3glpvgUbBRQUepoLN_S4JM-Vu4PRIy9Jti-Fez31tnHEmqpPjVYL6EC5KAsBbrB-81jqtE40MTmDGotc8Q51yCk4TSkqU6AbDGvSC8OmzCYb5_IifI2oANZ9YzArOf0XzmMe_4o/s1600/blogger-image-370685418.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqmvCv3glpvgUbBRQUepoLN_S4JM-Vu4PRIy9Jti-Fez31tnHEmqpPjVYL6EC5KAsBbrB-81jqtE40MTmDGotc8Q51yCk4TSkqU6AbDGvSC8OmzCYb5_IifI2oANZ9YzArOf0XzmMe_4o/s640/blogger-image-370685418.jpg" width="480" /></a></span></div>
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<span style="font-size: large;">There is something so specific about the light in LA, the way it bounces and shimmers from the East Side to the West.</span></div>
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<span style="font-size: large;">It's a special place.</span></div>
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<span style="font-size: large;">I've tried to explain how to love it to my friends who live in New York, but they are snooty about surviving all four seasons.</span></div>
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<span style="font-size: large;">I never had to try to love it. I went there, I was sixteen, and I knew I would end up there one day.</span></div>
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<span style="font-size: large;">And so much shit has happened since, that every time I land at LAX (four times this year), I head outside, breathe in and out and feel immensely grateful.</span></div>
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<span style="font-size: large;">There are few places I feel at home.</span></div>
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<span style="font-size: large;">My parents' house, my grandmothers' house, New York, and LA.</span></div>
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<span style="font-size: large;">(Genevieve and I are flying out New Year's Eve. We will be in Santa Monica by 4:30, just to watch the last sun of the year descend upon the ocean.)</span></div>
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<span style="font-size: large;"><b>NUMBER THREE.</b></span></div>
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<span style="font-size: large;">This Ding Dong Doggie</span></div>
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<span style="font-size: large;"><img border="0" height="337" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheDti4BCYrkfVg7k4JqhSdpe8T1dgjfwrrzZd8dRh6057r4PRp1CHyvHyQ-HSawQjVjFhtg7FYkyTscxs_5VI-jElJL7IFQtrZeeNDMsUB4WnT1_rbmSft6NOJrg7cRrsVeHc6DAtRl0c/s400/blogger-image--228873781.jpg" width="400" /></span></div>
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<span style="font-size: large;">This dog.</span></div>
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<span style="font-size: large;">For never leaving my side, for keeping my feet warm, for hogging the bed, for being OK when I exchanged you for a human partner, for coming back when things ended, for being a dumb dog who doesn't understand a fucking word I'm writing. You are easy, simple company, Shea. I never truly understood the whole man's best friend thing until this dog refused to leave my side as I recovered from hospital stay after hospital stay. Way to kill it at being a dumb dog, Shea Stadium Bergin.</span></div>
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<span style="font-size: large;"><b>NUMBER FOUR:</b></span></div>
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<span style="font-size: large; margin-left: 1em; margin-right: 1em;">The sunrise</span><br />
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<span style="font-size: large; margin-left: 1em; margin-right: 1em;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb3XdmReSryrjIM9Dof7R8nPKVsTpNjkxtOK59S7Nxz-Zor3GO2-LcHoKqZpAk9zhOs4mf9xbTlbpVKxnvQ9cextkYInGQ-nffhfUeI7jjoi2qmh-axL3_hZfYIBmMPVoZoU07E6K3DK0/s1600/1655635_967123584742_2219224706368138295_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb3XdmReSryrjIM9Dof7R8nPKVsTpNjkxtOK59S7Nxz-Zor3GO2-LcHoKqZpAk9zhOs4mf9xbTlbpVKxnvQ9cextkYInGQ-nffhfUeI7jjoi2qmh-axL3_hZfYIBmMPVoZoU07E6K3DK0/s1600/1655635_967123584742_2219224706368138295_o.jpg" height="240" width="320" /></a></span></div>
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<span style="font-size: large;">So many nights I did not sleep. Most nights I did not sleep. </span></div>
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<span style="font-size: large; margin-left: 1em; margin-right: 1em;">Most nights I forgot how to sleep and so I stayed up, watching The West Wing, being less productive than any of the guys on Tinder I meet who live in the parents' basement.</span></div>
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<span style="font-size: large; margin-left: 1em; margin-right: 1em;">Shit was bad.</span></div>
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<span style="font-size: large; margin-left: 1em; margin-right: 1em;">But I would always look forward to daylight, because I knew I would drag myself up to see the light.</span></div>
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<span style="font-size: large; margin-left: 1em; margin-right: 1em;">On the good days I would walk East, Shea tied to me, and stride straight toward the great blue sea.</span></div>
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<span style="font-size: large; margin-left: 1em; margin-right: 1em;">The sun would crack open, yellow as a yolk, and we would glide into the day.</span></div>
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<span style="font-size: large; margin-left: 1em; margin-right: 1em;">(Usually by falling back asleep.)</span></div>
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<span style="font-size: large; margin-left: 1em; margin-right: 1em;">My most peaceful moments are when I am within something bigger than myself. </span></div>
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<span style="font-size: large; margin-left: 1em; margin-right: 1em;">When I feel altered and changed by something that does not belong to me, but to all of us. </span></div>
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<span style="font-size: large; margin-left: 1em; margin-right: 1em;">Universal and whole.</span></div>
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<span style="font-size: large; margin-left: 1em; margin-right: 1em;">Day light.</span></div>
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<span style="font-size: large;"><b>NUMBER FIVE.</b></span></div>
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<span style="font-size: large;">Travel, or: the reason I have no money.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqb42C9Re28dJrR5oh9N4fegMaBaVpLJ36c8kY0qgLjDF89bsybP1nGHiY4Ee4tj3h9jBmBRMZCMzPlSgOt7Z6pnbwP6IuI3pCR_zcjeYKurFFGQL_2yYrD9Yb6pmQzwvM9OIenMSdwTM/s1600/blogger-image-704839475.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqb42C9Re28dJrR5oh9N4fegMaBaVpLJ36c8kY0qgLjDF89bsybP1nGHiY4Ee4tj3h9jBmBRMZCMzPlSgOt7Z6pnbwP6IuI3pCR_zcjeYKurFFGQL_2yYrD9Yb6pmQzwvM9OIenMSdwTM/s400/blogger-image-704839475.jpg" width="400" /></span></a></div>
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<span style="font-size: large;">I had to be so many places this year.</span></div>
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<span style="font-size: large;">I had to go. I had to have momentum. I had to do something other than be alone with my sickness and my sadness.</span></div>
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<span style="font-size: large;">And so I moved around. I glided, when I could glide.</span></div>
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<span style="font-size: large;">I spent a couple months in Brooklyn, but that was not far enough.</span></div>
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<span style="font-size: large;">And so I headed to Seattle and the Pacific Northwest, and down to Los Angeles. </span></div>
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<span style="font-size: large;">And then I had the opportunity to surf in Mexico,</span></div>
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<span style="font-size: large;">and I did that, e</span><span style="font-size: large;">ven though it hurt. </span></div>
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<span style="font-size: large;">And many times I could not get up, from bed or on the damn surfboard.</span></div>
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<span style="font-size: large;">Some days my particular afflictions feel bolder than they were the day before, and these days sink me.</span></div>
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<span style="font-size: large;">In Mexico, I swam.</span></div>
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<span style="font-size: large;"><b>NUMBER SIX.</b></span></div>
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<span style="font-size: large;">The rest of you.</span></div>
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<span style="font-size: large; margin-left: 1em; margin-right: 1em;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS24pZHSx6DamDe2tJhexdy9ufkCbl2xLj13YLJ6Kwg9v-i4bSB-CTDBpBCX996lXXxRM3urQE54tVBfnKmGv99VEoP5y8uvG5o5pKF2Jzurd3nR4lDeyth-oabCo_P-0pGDorSYGIIDE/s1600/blogger-image--1384935472.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS24pZHSx6DamDe2tJhexdy9ufkCbl2xLj13YLJ6Kwg9v-i4bSB-CTDBpBCX996lXXxRM3urQE54tVBfnKmGv99VEoP5y8uvG5o5pKF2Jzurd3nR4lDeyth-oabCo_P-0pGDorSYGIIDE/s400/blogger-image--1384935472.jpg" width="400" /></a></span></div>
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<div style="text-align: center;">
<span style="font-size: large;">There are many things I've done or said or fucked up that I regret.</span></div>
<div style="text-align: center;">
<span style="font-size: large;">I treat myself pretty badly sometimes, and I can do it to others too.</span></div>
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<span style="font-size: large;">What a jerk I can be.</span></div>
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<span style="font-size: large;">And yet.</span></div>
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<span style="font-size: large;">I still have this big beating heart that lives outside of me, that is there for me. I have numbers I can call when I need help.</span></div>
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<span style="font-size: large;">I have my parents, who are saddled with the task of caring for me, yet never make me feel like a burden.</span></div>
<div style="text-align: center;">
<span style="font-size: large;">The same goes for my siblings, whose love is beyond measure.</span></div>
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<span style="font-size: large;">And the friends I've had since elementary school, and high school and college.</span></div>
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<span style="font-size: large;">We had great weddings this year, and gatherings in Denver and the Poconos. I got to move in packs.</span></div>
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<span style="font-size: large;">Whether it was with family or friends,</span></div>
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<span style="font-size: large;">I had a pack.</span></div>
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<span style="font-size: large;">And that made this year all the more liveable.</span></div>
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<span style="font-size: large;">So thank you all.</span></div>
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<span style="font-size: large;">Because I can say eff this year, or I can see, look, I got to watch children grow and change. </span></div>
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<span style="font-size: large;">And while I am not grateful for sickness, </span></div>
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<span style="font-size: large;">I do believe that it has given me a bitter but knowing </span></div>
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<span style="font-size: large;">perspective of the way life can kick you in the balls, time and time again, while handing you over the most precious of gifts, time and time again.</span></div>
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<span style="font-size: large;">See you all in 2015.</span></div>
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<span style="font-size: large;">Love,</span></div>
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<span style="font-size: large;">Kelly</span></div>
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<span style="font-size: large;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6hbGn5u-arRLHHCp6uuz_xzTF8FDfHUFCQrZq6toJ6E1T1UQ2VQ7kR7UyZRGnwXMan2i-d4kh8sXryCN7v9PmgO7HomPTC6BKuTzlZNfEAxdCQ-gb52MxqEuPxOTpM-mJHRk5wjT9LY0/s400/blogger-image-226621515.jpg" width="400" /></span></div>
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KPBhttp://www.blogger.com/profile/12376810607662968879noreply@blogger.com3