Free Fall

Photo by ian dooley on Unsplash

One of my greatest fears is falling. It’s not the height that scares me. It’s the fast lack of grip, the surge to the bottom. I don’t like being out of control.

Never have.

Ironically, a recurring theme in my life is losing control. I never learn to let go and enjoy the fall, see where it takes me.

Never will.

For the past four months, I’ve been fighting to keep my health insurance plan. My state changed the minimum annual income requirement back in March, and we’re now $400 over the mark. $400 is far from enough to cover the cost of a yearly deductible and monthly premium, plus co-pays and prescriptions. Yet in the state’s eyes, we should be able to afford it no problem. They don’t account for rent and heat. They don’t even look at your income after taxes.

We looked at my husband’s company’s insurance plan, too. Even though it’s a bit cheaper than one of the state market’s plans, we still can’t afford it.

We’re already struggling.

I’m really grateful that we had state insurance these past few years. Because of it, I was able to get a diagnosis and start treatment for my UCTD. Still, we can’t afford another plan, and we definitely can’t afford my treatment and monitoring without insurance.

I looked into several avenues, but they all came down to one thing: soon I’d be out of medicine.

Once I run out of medicine, my disease becomes aggressive. It isn’t long before I’m bedridden again and I’m unable to care for myself. To write. To live.

I felt myself spinning out of control. One of my other greatest fears is my disease. I’ve worked hard to get to where I am. I’ll be damned if I go back.

The fear is suffocating. My rheumatologist and I have determined that Plaquenil isn’t enough, that I need to add other medicines. Plaquenil has been so very therapeutic for me, but it’s not a magic bullet. I still have pain and stiffness, fatigue and brain fog, and other symptoms that may be related but definitely need further testing.

It doesn’t help that someone I love with an even more severe condition is losing her insurance, too. Chronically ill people rely on social services, but those programs are always the first to go when states need to make budget cuts.

I’m too scared to feel angry.

I have one last thing I can try. It’s a long shot, and I’m only going to have a small window. If I’m successful, it’ll be the net that catches me at the bottom. If I fail, well… I guess I’ll have to finally learn to let go.

The Real Cost of Chronic Illness

via some ecards

Chronic illness costs more than you’d think. Financially speaking, it’s the thousands of dollars spent on doctor’s appointments and medications. It’s the medicines, salves, and mobility aids not covered by insurance. It’s takeout in place of a home-cooked meal. It’s time lost at work due to sleepless nights and bone deep fatigue. It’s whole careers and goals, and starting over with new dreams and hopes.

There’s also an emotional toll.

It’s the frustration of finding the right treatment and the side effects of medications. It’s the devastation of years of pain. It’s evenings crying at the sink because it hurts to wash dishes when wrists bend to scrub. It’s the sharp inhalation of breath every time you bend over because knees won’t bend and hips shift as if on broken glass. It’s feeling exhausted after taking a shower, or skipping one because it’d only wipe you out completely.

Then there’s the pain of friends and family who don’t get it. It’s comments like “You’re not using your cane! You must be all better!” It’s dismissive belittling: “That’s not too heavy,” “You just need to walk more.” It’s the feigned interest, the change of subject.

The most substantial cost, though, comes when those close to you—the people you thought understood—actually don’t. It’s the priciest lesson, the deepest cut.

It’s a common occurrence for people with chronic illnesses. It happens to us all the time. We’re treated as an inconvenience—or worse, we’re treated as if we’re purposely inconveniencing someone else.

As if we have control over our illnesses or the weather.

Chronic illness teaches you who’s real and who isn’t, who truly belongs in your life. People like my mom and sister, who stopped by when I couldn’t go apple picking a few weeks ago and brought me apple cider donuts. They drank tea with me and turned an otherwise miserable and lonely afternoon into a nice memory.

All people like me need is a bit of understanding. We don’t enjoy canceling plans. It’s not fun being stuck home under an electric blanket and painkillers. I’d much rather be able to get out and live, but my body often has other plans. Slowly I’m learning to live around it, but it’s even harder to live around a broken heart.

Back to School

Photo by Thought Catalog on Unsplash

I love the newness of this time of year. Maybe it’s because it’s almost my birthday, marking the beginning of another year of life. Or maybe it’s because, all throughout childhood, this is always the time I’d be getting ready to start a new year of school. Whatever it is, the end of summer and early fall—this in between time—have always brimmed with possibility.

This is usually when my writing is most productive. Last year around this time, I wrote a 60K-word novel in two weeks. This year, I’ll be doing something a bit different.

I’m going back to school.

Throughout the past six years, I’ve learned a lot about publishing. I’ve released 11 novels (plus some now out of print short stories and novellas). I’m damn proud of all I’ve accomplished—especially recently making the bestseller list in three Amazon categories—and I’m looking forward to a lifelong career.

I’ve also long felt like I’ve been missing some valuable piece, though.

Whether I’ve been with a publisher or independent, I’ve been responsible for the majority of my marketing. While I can do things like write a marketing plan and create an email sequence, there’s a lot more I need to learn.

So I’ve decided to go back to school.

Right now.

I thought about it all summer, and then two weeks ago I applied to a program before I could change my mind. I start my B.S. in marketing on Monday.

I’m hoping that it won’t affect my production schedule too much, but since it’s an accelerated program, I know I’m going to have to make some sacrifices. I can’t do it all.

  • For the next eight weeks, I won’t be blogging much.
  • Aside from scheduled Facebook posts, I likely won’t be on social media often, either. I’ll do my best to reply to comments, but please know that studying will have taken over my life.
  • I will continue monthly email newsletters. You can expect them on Friday, September 8th and Friday, October 6th. (If you’re not already on my email list, sign up here.)
  • I’ve started working on a new novel. It’s a standalone second chance romance. I don’t have a release date for it yet, and likely won’t for a while. I do hope to continue publishing regularly, though.

What can I say? I like living on the edge.

Getting Out for My Own Sanity

I had such a great weekend. I’m still really low on spoons, but it was worth it.

I kicked it off on Thursday with Chapel and Good Charlotte at Toad’s Place with my sister Lauren. Chapel was new to me, but I fell a little bit in love—especially with their drummer, Kortney. She was excellent, and she also looked like she was having the time of her life, dancing and smiling the entire time she played. There may be a future character inspired by her.

Good Charlotte played well, but after middle act 3OH!3, the atmosphere changed. The crowd got pretty aggressive. We were getting shoved and hit. Let me tell you, when you’re already really sore, the last thing in the world you want is to get beat on at what should have been a tame show. Good Charlotte actually stopped playing to tell people to knock it off—that’s how bad it was.

We ended up leaving early because it was nearly midnight and Good Charlotte was still playing. As much as we would’ve liked to stay, we both agreed that we were tired… and sick of getting knocked around by other women and giant douchebags alike.

That was my first and last experience with EDM. I’ve debated whether I even wanted to write about this. But I’ve been to dozens of concerts—even stood in mosh pits—and I’ve never had such a horrible experience. It’s hard to explain, but in pits, everyone is there to bump into each other. Sometimes people get hurt, but it’s all in good fun. And everyone in the pit is there for the same thing. This was general admission—no mosh pit—and the house was packed. It was about a thousand degrees and you couldn’t breathe without brushing the person next to you. People really wanted to hurt each other; at one point, someone ripped a crowdsurfing guy down and people started beating on him.

I really think the shitty EDM group set a bad tone. Not only were their lyrics misogynistic and excessively raunchy, but the “music” itself made you feel bad. My heart was vibrating in my chest, the little hairs on my arms were shaking, and I actually felt nauseous. Throw in the lights and bass pounding on you, and… ugh. I will never understand EDM. Ever.

I mean, I don’t wanna sound surly, but the whole experience was bizarre. Even though I was enjoying the Good Charlotte nostalgia, I was really glad when Lauren asked if I was ready to head out. They’re her all-time favorite band, so I didn’t want to tap out on her, but I was more than ready.

Saturday night was much more tame, thankfully. It was time for Part II of our great summer concert weekend: Haerts and Michelle Branch. See, Lauren basically spent all summer prepping for the Bar and then taking the 12-hour exam itself, so when she saw these shows coming up, she decided to treat us. She more than earned it; everything I’ve heard about the Bar sounds brutal.

I brought my cane with me, and there was plenty of seating in the back, but we ended up right up near the stage. Carpe diem, right? No one beat on us this time, so that was cool. There were a lot of drunk girls, though, haha, and I think we both got spilled on a little—but I’ll take that over someone trying to knock me over.

Haerts was another new-to-me band, and again I fell in love. They’re ordinarily a duo, but they had a full band with them, and they sounded amazing. I thought Nini reminded me a bit of Stevie Nicks. She had some pipes on her!

Then it was time for Michelle Branch and let me just say, my inner 12-year-old self was completely validated. I was a little bit in awe, especially since she had a range of guitars, swapping them out for certain songs. She was the reason I started writing (terrible) songs in eighth grade. I used to carry around a notebook and dream of the day when I’d finally learn to play guitar and put my words to music.

Well, turns out I’m instrumentally challenged, but I haven’t stopped writing.

It also turns out that cane dancing is possible. Having a cane comes in handy when you need to get off your hip for a moment but don’t want to stop dancing. I definitely had a better time at the College Street Music Hall shows than I did at Toad’s on Thursday. I was also less sore after.

On Sunday, we got up early and drove to the lake to spend the day with Noni and Aunt Wendy. Unfortunately my mom had to sit this one out because of her neck. Even though we missed her, we had a great day.

I spent yesterday recovering and doing a bit of editing. My brain was mostly mush, though, and I was in bed by 7 p.m. (but didn’t fall asleep until around 2 a.m., sigh). Though I’m still pretty tired today, I’m still riding a Haerts and Michelle Branch buzz.

Music is a kind of magic to me. I’m really glad my sister got me out and about this weekend. It’s too easy to let the pain win, to get dragged into a life of hibernation, a routine of rest. While I try to listen to my body and take it easy as much as possible, sometimes—for my own sanity—I have to push it.

Sometimes the pain is worth it.

A Family Tradition

"A Family Tradition," by Elizabeth Barone

I wish there was a way to photograph those moments in life where you truly feel alive, perfect. Capture that feeling, forever preserved. There’s no way to actually save a memory, so I try to remember. I tell myself I’m going to write it down, and then I forget.

There’s a ducky bowl that’s been banging around since I was little. It’s a bit faded at this point, but otherwise in decent condition. When I was a kid, it was the coveted cereal bowl in the house.

I will fight to the death for this. It's a family tradition. 🥄

A post shared by Elizabeth Barone (@elizabethbarone) on

I liked it because when you finished the cereal, the ducky “swam” in the remaining milk. My dad liked it because it was bigger than the other bowls, and the man loves his cereal fixes.

We fought over it, a lighthearted war. It became a race—who would get the clean ducky bowl first. For years this went on, victory cries ringing through the house every time one of us claimed it: “My ducky bowl!”

It became a running joke that, at some point, became a ritual. Ducky bowl was serious business. It traveled with us from apartment to apartment, finally ending up at my grandparents’ when we moved in during my senior year of high school. I poured snacks into it while I wrote my first novel, while I worked on homework during college, while I wrote code for clients’ websites—if Dad didn’t get to it first.

I kept threatening to take it with me when I moved out into my own place. Dad kept threatening to hide it.

I introduced my husband to it like he was meeting family: “This is ducky bowl.” When we got married and began packing to move into our first apartment, I grabbed ducky bowl from the rack of clean dishes and wrapped it in newspaper before Dad could see.

I smuggled ducky bowl out of my parents’ place like a thief.

During that first Christmas after or some other holiday, I confessed my crime to Dad. He feigned wounded outrage, and I tried to make it up to him. “You can have it on weekends,” I offered.

“You can keep it,” he told me, as if passing on a family heirloom.

For the first time in two decades—maybe longer—I had ducky bowl all to myself. Even though I bought a set of dishes with bowls twice as deep, it was still my favorite. I happily munched cereal, marveling at how the thing had managed to stick around. Some things I lose, others hover about me like ghosts.

And then Mike stole it.

“No!” I protested, reaching out for it as Mike poured cereal into it or ate cheesecake out of it. At first I thought he was just messing with me. Slowly I realized I was wrong.

I had a rival.

Again.

The race began anew: secret washing of dishes, stacking it beneath the other bowls in the rack so he wouldn’t see it; playful shock when he got to it first; considering hiding it in an unlikely place. It was these moments that I most missed my dad. (He’s still alive, don’t worry.) I missed the game, the shared running joke. All children grow up and out of their parents’ homes, but I think some small part of us stays behind.

Tonight I caught Mike reaching for ducky bowl in the rack.

“Damn it,” I muttered, feigning offense. I reached for it.

Mike grabbed a spoon. Gently he tapped me on the forehead with it. “Back, demon.”

I gaped at him in mock outrage. My grip tightened.

He tapped me again. “Banish your evil.”

“Unhand it or I’ll bite you.” I leaned down, jaw open, white teeth flashing.

“Banish your evil!” He bopped me on my topknot.

My teeth neared, Mike fending me off with the spoon, my eyes filling with tears of mirth, jaw straining from laughing while pretending to bite. Just as I grazed flesh, he released it, bringing his hand to safety.

“My ducky bowl,” I told him.

He reached for another bowl.

“Here.” I sighed and held out ducky bowl. “You can use it.” For now, I added silently.

Looking at the proffered bowl, he shook his head at me. “Demon.”

I will fight to the death for ducky bowl. It’s a family tradition.

How I Know I’m Bisexual

via Mary (Flickr)

Everyone’s experience is different, but I knew I was bisexual from an early age. I just didn’t have the vocabulary to explain the identity.

I was kind of a boy-chasing little kid. I ran after them on the playground, I got in trouble for kissing them, and crushed hard. People would ask me which boys I liked and I always had a running list. It was different with girls, though.

No one ever asked me which girls I liked. It probably never even crossed their minds. With girls, I was more shy. These crushes manifested as close friendships. I didn’t really know how to explain my feelings. The people I knew were in m/f marriages or relationships. I didn’t know there was any other way.

In middle school, I started to realize there was something different about me. On the bus, I couldn’t help but stare at certain girls as they moved past me. I knew what a lesbian was but I also knew that didn’t quite fit me. That didn’t stop other kids from calling me Lesbo or twisting my nickname (Liz, which they made sound like “Les”). They knew I was different, too, and they punished me for it.

It wasn’t until high school that I found my people and my identity. Two friends of mine came out. They announced that they were bisexual and dating, and it kicked off a whole LGBT+ movement in my school. Suddenly there was a word to describe a part of who I was, and I had a safe place where it was okay to be me.

I’ve been bi my whole life. I’ll always be bi. Whether I’m in a relationship with another woman, single, or married to a guy with a lot of facial hair… I’ll still be bisexual.

I’m proud of all of the parts that make up who I am. It hasn’t been easy, being queer—or me in general, to be honest—but I now have a pride that no one can take from me.


Speaking of pride, my #OwnVoices f/f romance Any Other Love comes out August 21st, 2017! Pre-order your copy now for only $0.99, or read the first chapter.

Baby’s First Gray

It’s really more of a reddish blonde gray.

Today I hit two milestones: I reached 55K words for my work in progress (Any Other Love), and I yanked out my first gray hair.

I’m not proud to admit that I cried. My thick, very dark, 3B curls are my favorite feature. My hair has been relatively unscathed by my UCTD (aside from some thinning along my temples); with Plaquenil, it’s grown back in just as thick as it used to be. So yeah, I’m a little vain about my hair.

I did some whining and pouting, endured some of Mike’s jokes, then went to do the dishes.

“Hey,” he called. “Do you have any ink?”

“Fuck off!”

“I’m serious. I need to print a label.”

I’m going gray, but life goes on.

In an ironic twist, I was just talking about gray hairs last weekend with my Nana. She was saying how hers grow in a reddish blonde gray and we got to talking about dye. I said I’ve always planned on dying my hair a fun color when it goes gray, because for the first time in my life I won’t have to bleach it to death to get it to take the color.

Sigh.

I wouldn’t be me if I didn’t immediately start researching what happens when curly hair goes gray. Sometimes its curl type changes, but it almost always gets more coarse. So I’ll really have to baby it and moisturize it.

I may be going gray, but at least I wrote 5,000 words today.

I Want to Be the Kind of Person Who…

via Unsplash

I’ve been in reactive mode for as long as I can remember; things keep happening, and I do things in response. For years I’ve felt like I’ve only just been keeping my head above water. Now, I know shit happens in life and I can’t necessarily control everything, but I’d really like to break out of that cycle.

Yesterday Sandy and I were looking for a laugh and searched for “how to adult” videos on YouTube, when we came across this.

What I thought was going to be funny ended up really opening my eyes. I don’t think I’ve been victimizing myself, per se, but considering all the trauma I’ve been through, it’s really easy to fall into a trap where I feel like bad things just keep happening to me.

It’s time for good things.

I keep seeing all of these indie authors making it and thinking things like “When is it going to be my turn?” and “What am I doing wrong?” I see friends buying houses and going on vacations, and I wonder if those things will ever happen for me. It’s not my fault that I got sick or that my pain is so debilitating I can’t hold down a “normal” job, but there are things I can control.

In December I got a new phone and one of its features is a bedtime and wakeup time. It’s been a game changer for me. All I had to do was tell it how many hours of sleep I wanted per night, then fiddled around a bit with a dial until I found times that I could live with. Since then, I’ve been going to bed around 11 p.m. and waking up at 8 a.m. almost religiously. I say “almost” because I have it set for weekdays and let myself stay up and sleep in a bit later on weekends. Aside from a few exceptions—painsomnia, events, Stardew Valley or Netflix rabbit holes—I’ve been sticking to this for months. And you know what?

I’ve been much more productive. I sleep better. I have more energy. I’m in a better mood.

I still have pain, I still have fatigue, I’m still sick, but combined with my new meds, I’m in a much better place. And all I did was change one small thing.

Kalyn’s video got me thinking: What if I took things a step further? Rather than stumbling upon and playing with an iPhone feature, I can make some conscious tweaks and improve my life even more. I sat down and thought about the kind of life I want, and I came up with this list:

  • I want to be the kind of person who will write every day.
  • I want to be the kind of person who is able to comfortably pay my bills and buy necessities.
  • I want to be the kind of person who has my own car.
  • I want to be the kind of person who can buy a house.
  • I want to be the kind of person who will regularly treat myself to a manicure and pedicure.

 

This week I wrote every day. I didn’t set a daily word count goal (though I do like to write at least 1K words). I was just happy with myself as long as I wrote. Usually, even if I didn’t feel up to it, the words started flowing after I pecked away at the keyboard for a bit. It didn’t hurt that I’m really enjoying writing Any Other Love. Even though I’d like to write much more, much faster, I’m still making progress. I’m making my way to 25K, then 30K, then 40K… all the way to my projected 70K.

I don’t work on weekends, so I don’t usually write then (but sometimes if I’m really fiending, I “sneak” in some writing). Saturdays and Sundays are mine to do with as I please. Netflix and chilling on my couch in the old fashioned sense of the word? Yep. Playing an obscene amount of Stardew Valley? Yes. Spending time with friends and family? Oh yeah.

Those are two more simple rules that I follow, and it works.

I’m still figuring out a plan for the other things—after all, one doesn’t simply buy a house out of thin air—but they feel achievable using these principles.

What kind of person do you want to be? Let me know in the comments!

A Touch of the Flu, a Touch of Depression

via Unsplash

It’s been a full week since I last posted here, which is weird for me because I’m usually a font of word vomit. I managed to come down with another flu virus, though, so I’ve been busy napping. This bout was particularly nasty and, from what I understand, it’s been going around. I didn’t even bother to get swabbed, because the second my eyeballs started hurting and my temp started climbing, I knew.

Still, it’s been rough. For several days, I had muscle, joint, and skin pain. Yes, skin pain. It’s a thing I sometimes experience with my Undifferentiated Connective Tissue Disease, but it’s never a big deal. This? Was hell. I couldn’t move, because every inch of my upper body felt like it’d been badly sunburned. Showering and toweling off after? Hell, I tell you. The muscle and joint pain were nasty, too. On its own, the joint pain would’ve been a 6/10 and the muscle pain a 4/10, but the three together were damned near unbearable.

I decided not to call my doctor because A) Tamiflu only shortens the flu by like two days and B) I kind of currently don’t have a primary care doctor. My doctor’s office has been blowing me off ever since I sent in my letter of complaint, and I honestly didn’t have the energy to talk to them about my concerns and explain my symptoms—especially since they don’t listen in the first place.

I just toughed it out, and I’m still recovering. At this point I just have a runny nose and dry cough, and I’m still easily fatigued. I do feel better, though, so I really can’t complain. However, I’ve also come down with a touch of stupid depression.

It’s not easy for me to admit this. I kind of thought, once I’d worked through my PTSD, that I wouldn’t have to deal with this shit anymore. But there’s been a lot going on in my personal life lately that I haven’t really talked about. I’ve been overwhelmed and dealing with a lot of anxiety, and it’s apparently turned into depression.

Granted, I think anyone in my shoes would feel this way. I’ve been through a lot lately, and things pretty much suck in my country right now. For the past several weeks—months, even—I’ve been in survival mode, reacting as I need to and staying on my feet. It’s not at all surprising that I got the damned flu again. In emergencies, I’m always the one to panic after it’s all over. Today I burst into tears and had to remind myself that Mike is okay, I’m okay, everyone’s okay, we got through it all, we’ll get through everything else.

I guess I just haven’t had the time to process everything.

So while I’m recovering from the stupid flu, I’m also working on processing the past few weeks and the things that I know are to come. I’m also working on easing up on myself; I put a lot of pressure on myself, and tonight I realized it’s time to let it go. Writing has been really hard for me lately. I had a lot of plans for 2017 and the only one dictating what I “need” to do was, well, me. I’m working on clearing my plate a bit and giving myself room to recover, as well as room to just be, and then room to grow.

I’m also working on my author website this week, so if it goes down for a while, don’t worry. I’m not going anywhere.

Sometimes, you just need to pause and practice breathing—and that’s exactly what I’m doing.

It Can’t Rain All the Time

via GIPHY

It’s hard to believe that it’s only been 10 days since Mike’s surgery; ever since then, it’s been pouring on us. I could sit here and list every single thing that’s gone wrong since, but 1) it wouldn’t really be productive and 2) ain’t nobody got time for that.

I’ve got articles to write, 15-20K to reach for SOF4, and a nice hot shower to take.

These past 10 days have been very difficult and stressful—my blood pressure was 140/92 when I checked it Wednesday night, and that was hours after I blacked out, so I’m guessing it was much higher—but Mike and I are fucking scrappy. We’ve rallied so many times these past couple weeks, and somehow we’re still cracking jokes and cracking each other up.

10 years together, and we just keep getting stronger.

We also have fantastic family and friends who have helped us in so many ways, more than I could ever count or repay. Even simple things like late-night face time with my best friend, sitting outside just talking. I told my mom last night that, while I was bailing out my tub earlier, I had a moment where I was thinking Where are the grownups? and then realized Shit—I’m the grownup! We laughed way too hard because she told me she still has moments like that.

Adulting is hard, but no one actually knows what they’re doing. Which, if you want to be cynical, could mean that we’re all just a bunch of overgrown and unsupervised kids, but I’m just grateful that I’m not the only one who doesn’t always have the answers.

It’s only February and I’ve already changed my business plan and production schedule several times to roll with life’s punches. At this point, I’ve decided to just focus on writing for now.

via GIPHY

It kind of sucks, because I wanted 2017 to be a publishing year for me, releasing something new every quarter or even every two months. Since my blood pressure is high, though, I need to clear my plate as much as possible. Right now I have no release dates in mind, but I’ll let you know as soon as I know when SOF4 will come out. In the meantime, check out this teaser. It’s dead sexy.

For the time being, I’m buckling down and focusing on just writing and taking care of everything in my immediate world. To keep up with me, subscribe to my newsletter.

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