like a hole in the head

I came to my site this morning to find an old recipe. Reading through the post I needed, I was struck with how much I have changed in the last year: I’m more serious, less funny. I don’t write anymore. My brain exists in a cloud of medications that have made me a different person. I need them to survive, but it’s not a lively existence whatsoever.

I’d give anything to go back to the old Jenny. Starting Monday morning (January 27th), I just might have that chance.

Taken by Katie Blanch Photography - http://katieblanch.com

Let me take a step back. A few months ago, by sheer chance and a bit of good luck, a doctor spied something on my CT that no one had before: a hole. Not a hole in my head (though Monday I’ll have one of those, too!), but a tiny, microscopic hole in my superior semicircular ear canal. It’s called Superior Canal Dehiscence Syndrome, and it’s incredibly rare.

The watered-down version is this: you have three semicircular ear canals that are filled with fluid. They communicate with the brain as your head moves to keep you balanced. The canals are made of bone which encase the fluid. When a hole forms, naturally your balance–and your hearing–can get all sorts of wacky. In my case, the hole is right next to my brain, so with no bone there, only a thin membrane runs between the canal and the brain. This could very well explain my extreme sound sensitivity, balance issues, pain, vertigo, and dizziness.

Taken by Katie Blanch Photography - http://katieblanch.com

I met with the most fantastic surgeon here in Seattle and scheduled the procedure. Unfortunately, they can’t patch the canal by entering through the ear, so it is a cranial operation–they will cut out a small piece of my skull in order to access the canal they need to patch. Since it’s close to brain surgery, it comes with many inherent risks. Believe me, I’ve lost a lot of sleep over this one! After the operation is over I’ll spend 2 days in the ICU, followed by 3-5 more days in a regular room. When I’m discharged they’ll send me home with a walker so I don’t stumble around the house like a drunken sailor (but if I do I’ll be sure to take hilarious video for y’all).

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Now it comes back to the old question: am I hopeful? Unequivocally, yes. I have the best doctor, the best family and friends, and the best husband to help me through this. I believe that I will get back to my old self after all said and done. I’m thinking positive, and won’t let myself think otherwise.

Hopefully this year you’ll see a lot more of me. Hopefully I can get back to cooking, and photography, and writing, just as life was before I got whacked over the head with this illness. I want to laugh again, and cry from joy and not pain. I want to take care of my kids all day long and not get tired; not curl up in a ball of pain on the couch. I want to go out to restaurants, and parties, and play dates. I want to get my life back. And the next time you hear from me, I’ll be funny and sarcastic and cooking something weird. I’ll be Jenny again.

Taken by Katie Blanch Photography - http://katieblanch.com

xoxo

Jenny

All photos in this post © 2013-2014 Katie Blanch Photography http://katieblanch.com/

 

five years

I think it’s time I told you the story behind the dedication of my book. If you’ve read it, you’ve seen this, and maybe wondered what it was all about:

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The worm is how we fell in love, or at least how I fell in love with him.

Let’s take a step back. It’s 2007. I’m starting a fresh new chapter in life: the Masters in Teaching program at Seattle University. I make friends. Great friends, and love my new path.

In our cohort there is this guy named Dave whom I can’t quite figure out. He wears old tee shirts and flip-flops all the time; he’s always smiling and talks to everyone with ease. He left a high-paying career in software to become a low-paid math teacher. But there’s some sort of glow around him. Maybe it’s his just his rosy cheeks, I think. But no, it’s more than that—he is the type of person people are drawn to because he is so easy to be around, and that’s his glow.

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One of our assigned observations is at an alternative middle school. Eight of us are sent there, and then divided into partners for observing the classrooms. I’m paired with Dave. At first he makes me feel awkward—he sits too close and his face is inches from mine when he speaks (this, I would later learn, was because he had a huge crush on me right from the start of the program). He asks me personal questions when we’re there to work. But he also makes me a little flustered, in a good way. In the I’m-developing-a-crush-too sort of way.

On the first day when the lunch bell rings, we go to the teacher’s lounge and grab our food. The rest of our cohort sits down to eat, but Dave, being the rebel and social butterfly that I am learning he is, leaves. “I’m going to eat with the kids,” he says, one foot out the door. I follow him without even thinking.

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We make our way to the playground and find a group of seventh-grade girls that offer us spots beneath their shady tree. Dave makes silly conversation that the girls adore, asking them about their favorite colors and movies and bands. “Are you going to be our teacher next year?” they ask. He is going to make a great teacher, I think to myself. And as I sit next to him, I find that my mind is drawn to him. I’m not thinking about the banter of these girls, asking me where I grew up and what kind of music I listen to. I’m spitting out robotic answers, because all I can think about is Dave.

On our last day at the school, we observe a special education classroom where children from all ranges of the Autism spectrum learn together. Their teacher is a gem, and at the end of her lesson declares, “It’s the Jenny and Dave hour! You get to ask them whatever you want.” The kids light up like Christmas lights.

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For the next fifteen minutes we’re peppered with questions from how much money we make to what size shoe we wear to what our favorite foods are. Then one boy stands up. He speaks with his head down, his face flushed, wringing his hands together and rocking from side to side as he speaks. There is an important question in his brain that he needs to ask. He is being extremely brave in this moment.

“If there is a piece of chocolate and it has a worm on top, which one of you would eat the chocolate and which one of you would eat the worm?”

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I look to Dave and Dave looks to me.

“I’ll eat the worm,” he says. “She can have the chocolate.”

From that day forward, we fell for each other. Hard. Knowing that he was the one, and him knowing that I was the one, I made him wait to ask me the question—the question that comes with a ring—for three months. A year before I entered the Masters program I had broken off an engagement that left me wounded. I had to be extremely sure that this was going to last forever; that he was indeed the one, and the only one, forever.

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Three very happy months later, we took a walk to a park near his house. We loved going to parks and sitting on the swings, talking and laughing and doing nothing. It was our thing. As I sat on the swing, thinking about how our three months were up, Dave came around, stood in front of me, and then knelt. I don’t remember the words or how I said yes, but that yes, that agreement between us that we would be partners for the rest of our lives was the best decision I ever made.

Partners. There are no better words for what we are to one another. We tackle this life together, one day at a time, with a strong-willed 2 year-old, a sweet, precocious 4 year-old, one sweet dog, and a nagging broken ear. Somehow we do it all, but there is no way that we could if we didn’t do it together.

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We wrote our own marriage vows, and recited them to one another five years ago this week: August 2nd, 2008. One line of our vows was this: “I promise to support you. I will help you when you need help and try to help even when you don’t ask for it.” Dave has done exactly that and more for me in the past year. My illness has tested our lives, our strength, our sanity. And through it all, Dave has me covered. It’s like he’s superhuman or something—he works all day, then comes home to the two wild things and takes over so I can rest. He “eats the worm” everyday, and I’d be nothing without him.

Plus he keeps me in chocolate, so there’s that.

Xoxo

Jenny

hope

Note: if you haven’t read about my medical journey, you might want to catch up here and here first. Pics below are mostly from our recent trip visiting family in Colorado. 

Sitting out on a 95-degree patio with the misters blowing down upon us, dining on tilapia with fig sauce, I was asked, “Are you hopeful?”

I’ve been asked a lot of questions throughout this journey, but this one only twice. The first by my mom; the second by her good friend, my dining companion this particular evening. She and her husband were visiting Scottsdale and I, hopeful gal that I am, was in town visiting the Mayo Clinic in a hail-Mary pass to obtain answers on the ever-present pain in my ear. They offered to take me out to dinner.

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The question takes me aback and it doesn’t, because I’m always hopeful, but at times I lose my bearings and break down in a hospital bathroom somewhere. Who wouldn’t? Unless you’re devoid of emotion the grind of daily pain, and the grind of doctor after doctor telling you they don’t know what’s wrong or how to fix it, wears on you. It’s been wearing on me undeniably.

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But am I hopeful? Yes. I’m the type of person who never gives up. If this doctor doesn’t work I try the next (probably having a breakdown in a bathroom, or a closet, or in the arms of my husband in between). I was hoping the doctors here in Arizona would be the last. But even here–the proverbial Holy Grail of medical care–is stumped.

In between bites of tilapia I explained that yes, I am hopeful, despite each loss and gain along the way (there have been more losses than gains). What I didn’t say was that if I lose hope, I have nothing. I have no choice but to keep hoping, and wishing, and dreaming, and praying to whatever deity I believe in (I’m still deciding), because if I stop, and give up, and surrender to this pain, it will take me under. I have no choice but to keep going, if not only for myself, but for my family.

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So am I still hopeful? Yes and no. I’m hopeful that there will be an answer somehow, someday. I’m no longer hopeful that the answer will come quickly. I’m no longer hopeful that one particular doctor will be the answer. It might need to be a combination of ideas from three, four, five doctors that I pick and choose from like items off a shelf.

Here in the grand old US-of-A I feel that the age-old “pill for every ill” mantra still stands tall. Countless doctors have prescribed me countless medications, some doing more harm than good. I believe in pharmaceuticals and modern medicine and I don’t. We’ve come so far in helping cancer patients, HIV, MS, and many other diseases once thought terminal, by pharmaceuticals and other modern therapies.

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But for someone like me, who doesn’t have one specific illness or a diagnosis, pills aren’t always the answer. I can control some of my symptoms with them, but they often provide some awful side effects that make them unworthy of ingesting. For some people hope can come in the form of a pill, or radiation, or chemotherapy. But not for me. I often wish it were the case. Take one three times a day and you’ll be cured. How easy would that be?

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Am I hopeful? Some days yes, some days no, and somewhere I’m in between. But what I have learned is that this journey isn’t up to the doctors anymore. It’s up to me. What’s most unfortunate in American medicine is that you have to be your own advocate. You have to fight for what you need. You have to ask the right questions. Doctors won’t communicate with each other–you have to communicate for them with documentation. And if you aren’t being listened to, you have to be a pain in the ass. Call and visit and book appointments until someone does listen, or have someone with great hutzpah do this for you. Bring a friend or a relative to your appointments and give them your list of questions, too. That way if you break down, or lose your train of thought, or aren’t being listened to, they can jump in for you.

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Years ago (though it seems painfully like yesterday) after my mom underwent her first surgery for stage 4 uteran cancer, I slept by her bed for a week in the hospital, leaving only during the day to shower and change clothes at my college apartment. The nurses would tell me I didn’t have to stay, and my family would tell me we could split the night shift, but I wouldn’t budge. It was a silent agreement between she and I: I won’t leave you, and you won’t die on me.

The other reason? If she needed something in the middle of the night and pressed the call button, the nurses took five, ten, sometimes fifteen or twenty minutes to come. So I would hop out of bed and go harass them to come attend to her. If you can’t be your own advocate, you have to have someone else be.

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My Mom, right, and Charlie the sad cowgirl, left.

My mother is a true survivor, physically and mentally. She beat the son of a bitch called cancer and has been free and clear for several years. She never lost hope, even if she faltered here and there; it was always lingering in her body, fighting off the disease along with her. I try to be like her, even though I’m not staring something as daunting as death in the face. How do you not lose hope when the situation looks grim? All I need to do is go ask my mom. She and my dad have been my greatest advocates since the day I was born.

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I ran across this Post Secret today, a site I read religiously every Sunday morning. It reminded me not only to count my blessings—I have so very many, including two healthy, happy children, a husband who provides me emotional support, a shoulder to cry on, and (among many other wonderful things) great health insurance through his job. What do I (though I wouldn’t call us wealthy) have to worry about? In the grand scheme of things, very little.

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I worry about getting better so my kids have the mommy they deserve. I worry that my husband will forever have to prop me up when I fall down. I worry that there will be no cure—that I will go through life being forever allergic to noise. I worry that I will lose hope.

But am I hopeful today? Right now? Yes. Ask me again tomorrow.

xo

Jenny

 

the pain diary (ear saga part deux)

It’s been too long since I’ve given you a medical update here on the blog. If you’re my personal friend or Facebook friend, you probably know what’s been going on. But if not, I feel like I should let you in on something…something quite crappy going on in my life.

Remember that surgery I had? The one to fix my hearing?

I thought it would be a life saver. And maybe, eventually, it will be. But right now, I wish I had never done it. Because now, you see, I’m worse off than I was before. Before I was going deaf and now I not only need to wear an earplug 24/7, but I also have mind-numbing pain. All. The. Time.

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Let’s take a step back. The surgery was to repair my going-deaf ear by replacing one of the tiny ear bones with a tiny titanium prosthetic. The surgeon said it went fine and that I was recovering well. But I insisted I wasn’t “recovering well”, because I was still having pain.

“I’ve never heard of this,” he said. The words still echo through my mind nine months later. “You should not be having pain this long after surgery.” After a few post-op visits, and hearing tests that proved I was, in fact, gaining my hearing back, he dismissed me with those final words. He wouldn’t prescribe me any more painkillers and insisted on a regimen of Aleve.

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I wept my way to the parking lot in a blur of tears. He didn’t understand; couldn’t understand. Aleve? Aleve wouldn’t cut it. I was not, and am not, addicted to painkillers, for Christ sakes. This was–is–real pain, cutting through my ear and reaching up behind my eye, yanking down my neck like some devil’s hand. It never goes away. Morning, noon, night–pain.

I have a life to lead. A life that was going along swimmingly until I lost my hearing; a life that was going along great until the operation. My two tiny girls have a mommy who is cranky, deaf and frustrated.

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It sounds like I’m blaming the surgeon. Maybe I should be, and maybe I shouldn’t be. I have no diagnosis to go on. I’m just so fed up, living with day-to-day pain. I’ve been to four other doctors—three more on the docket in the coming weeks, including the Mayo Clinic in Phoenix—and no one can give me an answer as to why this pain is occurring. I’ve had MRIs, CTs, massage, cranio-sacral therapy. I manage on a regimen of painkillers that I loathe— they make my mind foggy and sleepy. I don’t want to live on pharmaceuticals, but right now they’re the only things I’ve found that makes the pain manageable. They don’t even fully take it away, just numb it a bit.

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The worst part? Sound makes the pain worse. The simple banter of my daughter requesting eggs for breakfast is murder; if I must attend a loud event I’m screwed for days. I’ve become a recluse, mostly avoiding social situations when I can. The world is loud, and it won’t stop being loud. I don’t blame it. I want the world to be loud–I just want to be a part of it. I want to hear it.

I wear an earplug at all hours of the day. It irritates my ear even further and everyone stares at me curiously. I don’t listen to music. I don’t watch TV. I don’t go to movies. I used to enjoy these things—they used to make me happy, make me relax, and now I can’t.

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I’m back to where I was—deaf—but worse than deaf. My other ear, the one without the earplug, is deafer than it was before we discovered the disease (otosclerosis), and it’s degenerative. My poor children and husband have to repeat themselves endlessly to speak to me. We should just get pads and pens to communicate. The only thing that keeps me sane right now is this—writing—but on the painkillers my brain gets foggy and word recall is sometimes difficult. I think I’ll lose my mind soon.

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My dear Lucy with a paper necklace she made for me. Notice the oh-so-fashionable purple earplug.

I worship those of you who have been living with chronic pain for longer than I have. I don’t know how you do it (how do you do it?). There are so many people worse off than me—I’m just being a pathetic whiner.

But I do feel as though I have to tell my story in case there is someone out there reading who is experiencing the same thing. If that’s you—if you have otosclerosis (conductive hearing loss)—thoughtfully consider your options. It’s such a delicate area to operate on.

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Stay well. Hug your kids. Call a friend. Blast your music. Go to movies. RSVP YES! to that party. Listen to the traffic and the birds and the lawnmowers. I hope that I will be able to again, someday soon.

Xo

Jenny

great summer reads

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Got a sweet summer vacation planned? Or maybe some lazy afternoons with the kids by the pool? Then read on, my friends, because this list is for you.

Here are my favorite books of late. The subject matter varies, but they all have one thing in common: they’ll keep you highly entertained until the very last page.

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1. Where’d You Go, Bernadette by Maria Semple

Bernadette Fox is a quirky, anxiety-ridden Seattle mom who was once a famous architect. Her teenage daughter Bee ignores her, her Microsoft exec husband doesn’t know what to do with her, and her virtual assistant in India performs nearly every basic task for her. She’s slipping through the cracks of sanity. And then, she disappears.

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2. Let’s Pretend This Never Happened, by Jenny Lawson

Jenny’s life story–”a mostly true memoir”–recounts her days growing up with a hippie mother and taxidermist father. Did your father ever “surprise” you with a squirrel carcass popping out of your morning cereal? Didn’t think so. One of the funniest books I have ever read. You might also know Ms. Lawson as The Bloggess.

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3. The Beautiful Creatures series, by Kami Garcia & Margaret Stone

If you know anything about me, you know I lean toward young adult fiction (I’ve published my own YA novel, next on this list!). But it has to be smart, well-written, and inventive. This series fits my high standards, and it was recently translated to film.

On the surface, Gatlin County in the deep, deep south, is as boring and predictable as a clock. But even Gatlin has its secrets, and Ethan Wate is about to find them out.

He’s dreamt about a beautiful girl he’s never met since he was young, and one day she appears in the flesh. Turns out she’s the niece of the town pariah, but there’s a whole lot more keeping them apart than that. Ethan and Lena share a past as mysterious and murky as Gatlin itself, and they’ll do anything they can to uncover it.

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4. Asylum, by me! Jenny E. Miller

Here’s the oh-so-official blurb:

After being found guilty of first-degree murder, sixteen-year-old June Foster is sentenced to life at Washington Pines Sanitarium.

June remains convinced that she was right to kill a man she knew was evil, but as time goes on in the asylum, she begins to question everything she knows. Or thought she knew.

As the events leading up to her incarceration are recounted, she begins to understand that the web she finds herself in is far bigger and stickier than she ever imagined. The warden of the facility, both violent and vindictive, is intent on making June’s life a living hell. 

June’s previous boyfriend, beautiful turquoise-eyed Frank, is the only one she can trust. Or is he?

Caught in the middle of child experimentation with untested drugs, arson, and murders, June Foster is reduced to two options—accept the fact that she has gone crazy, or hatch an escape plan from the asylum to get her life back.

Set in America during the 1950s, Asylum is a book you will not be able to put down. The author pulls you along relentlessly in a page-turning thriller that leaves you wanting more with each sentence—to a mind-blowing and unexpected conclusion you will not believe.

Intrigued? You can pick it up in paperback or on kindle!

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5. The Perks of Being a Wallflower, by Stephen Chbosky

The definitive coming-of-age story. Charlie starts high school as a wallflower, then falls into a quirky group of friends who embrace him for exactly who he is. You’ll wish you could go back and re-do high school as Charlie, surrounded by Patrick, Sam, Mary Elizabeth, Mr. Anderson and all the rest. One of my favorite books of all-time, I try to read it once a year.

The film, by the way, did an excellent job of portraying the book and was written and directed by Stephen Chbosky himself.

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6. What the Dead Know, by Laura Lippman

In 1970, two sisters disappear after a trip to the mall. Thirty years later, a confused, disoriented woman appears, claiming to be one of the lost sisters, accusing an esteemed cop of their kidnapping. Is it really her? Or is it a scam?

A real page-turner, as are other books by Laura Lippman including I’d Know You Anywhere.

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7. The Divergent series, by Veronica Roth

Yeah, yeah. The covers look a little Hunger Games-ish. But it isn’t a copycat: this YA series is outstanding for its own unique merits.

Dystopian Chicago is divided into five factions according to virtue: Candor, Abnegation, Dauntless, Amity, and Erudite. When Beatrice Prior turns 16, she must choose which faction she will devote her life to. Will she stay in the safe, peaceful faction of her birth or follow her heart and become Dauntless? The choice she makes surprises even herself.

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8. Unbroken, by Laura Hillenbrand

I don’t normally select World War 2 anything, but my book club chose this to read and I was smitten.

Louis Zamperini’s WWII bomber crashes into the Pacific, leaving nothing but debris and one leaking life raft. Through it all–sharks, dehydration, hallucinations, starvation, enemy fire, and loss of hope–he survives, only to be…well, I can’t give too much away. It’s not as much a war story as it is a tale of one man’s incredible will to survive. The pages turn themselves in this fast-paced read.

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9. The Slammed series, by Colleen Hoover

Do you remember the heart-fluttering, stomach-flipping excitement of your first love? You’ll relive it these unforgettable books.

Layken moves to a new town with her mom and younger brother after her father’s death. A rock for them both, she holds the whole family together, not easily distracted by boys, clothes or other frivolities. But then she meets her next door neighbor Will, three years her senior, and the butterflies flip her upside down. Fate has other plans for Layken and Will, as real life gets in the way of their budding romance.

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10. 11/22/63, by Stephen King

No, this isn’t a monsters-in-the-closet Stephen King book. He’s a versatile, incredible author, and his latest book is (in my opinion) one of his best.

What if you could go back in time and change the future? Jake Epping discovers he can do exactly that when his friend Al, a diner owner, enlists him on a mission that’s engrossed his entire life. Jake steps through the diner’s storeroom and right into 1963. His mission? Stop Lee Harvey Oswald. Keep JFK alive. But it won’t be easy. 1963 doesn’t want Jake Epping there. Not one bit.

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11. Gone Girl, by Gillian Flynn

If you haven’t read Gone Girl yet, you’ve been living under a rock. So come on outta there, pick up a copy, and start reading one of the most thrilling, page-turning mysteries to ever grace the shelves of a bookstore.

Nick and Amy look like the perfect couple from the outside, married for five happy years. But then Amy goes missing. The cops look straight to Nick, who isn’t doing himself any favors with his less-than-stellar attitude. Amy’s diary paints her as the perfect wife, and Nick as an abusive husband. It should be an open and shut case, right? Right?

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12. The Fault in Our Stars, by John Green

Oh, John Green. This is one of those books that, upon finishing, I clutched to my chest in a big bear hug and cried for a good five minutes. And then I flipped back to page 1 and began again.

Hazel’s Cancer Kid Support Group just got a whole lot more interesting. Augustus Waters is funny, handsome, and seems very un-sick for being a cancer kid. Hazel’s pessimistic, I’m-gonna-die attitude is about to change. She’s about to fall in love. Hard. And so is Augustus.

Funny, quirky, beautiful, and the most unique book I’ve read in a very, very long time. A must-read.

My book is out!

I’m happy to announce that my debut novel, ASYLUM, is released today!

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See my previous post to win a copy or buy on Amazon for Kindle or in paperback.

Best day of my life–thank you all for your support!

win a copy of Asylum!

*Contest Closed*

My debut novel ASYLUM hits Amazon monday, and I’m giving away a FREE copy here!

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Here’s the official blurb:

After being found guilty of first-degree murder, sixteen-year-old June Foster is sentenced to life at Washington Pines Sanitarium.

June remains convinced that she was right to kill a man she knew was evil, but as time goes on in the asylum, she begins to question everything she knows. Or thought she knew.

As the events leading up to her incarceration are recounted, she begins to understand that the web she finds herself in is far bigger and stickier than she ever imagined. The warden of the facility, both violent and vindictive, is intent on making June’s life a living hell.

June’s previous boyfriend, beautiful turquoise-eyed Frank, is the only one she can trust. Or is he?

Caught in the middle of child experimentation with untested drugs, arson, and murders, June Foster is reduced to two options—accept the fact that she has gone crazy, or hatch an escape plan from the asylum to get her life back.

Set in America during the 1950s, Asylum is a book you will not be able to put down. The author pulls you along relentlessly in a page-turning thriller that leaves you wanting more with each sentence—to a mind-blowing and unexpected conclusion you will not believe.

*Contest Closed*

Want to win a free digital copy for your Kindle, Nook or iPad? Leave me a comment below telling me the title of your favorite book, and you’ll automatically be entered to win. Contest ends Friday, March 29th. 

And the winner is…

Bill! Congratulations Bill, I’ll be emailing you asap ;) Thanks everyone for entering!