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.

Cover Reveal: Any Other Love

My f/f romance Any Other Love releases in two weeks! I’m always a combination of excited and nauseous during a launch, but I have more butterflies than usual surrounding this release for a few reasons.

  1. Any Other Love is my first published f/f romance.
  2. I’m not sure how it’s going to be received by my existing readers. Some of you are excited, and some of you have unsubscribed from my email list, bahaha.
  3. I’m not sure how it’s going to be received by lesfic readers. I have no other f/f romances, so I’m going to be the new kid on the block in this sub-genre. Being the new girl is always slightly terrifying.

Still, Any Other Love is a story that I had to tell from the moment that Char and Amarie met in Just One More Minute. (Yup—Any Other Love is a companion novel to Rowan and Matt’s story!) Plus, I’m very proud to be bisexual; I write f/f romance to honor that part of me, and to give other bi women a place on the shelves.

Finally, Any Other Love is important to me because it shares a bit of my journey to getting a diagnosis and treatment for my UCTD. Writing Any Other Love was like slipping into a warm bath and pouring my heart out into a journal.

So while I’m really nervous about this release, I’m also really, really excited.

Speaking of exciting things, it’s time to share the cover!

Blurb

From the outside, Amarie has it all: a promising teaching career, a big group of friends, and a gorgeous boyfriend. On the inside, though, her immune system is attacking her own body and slowly taking away everything she loves. The specialists she’s seen are baffled by her condition, so Amarie takes matters into her own hands and makes an appointment with a renowned rheumatologist in NYC. She could finally get the diagnosis and treatment she needs to live her life—if only she can get there.

Charlotte may dye her hair bold colors, but she’s never been brave enough to chase her lifelong dream of owning her own restaurant. When she finds out about a restauranteur convention in NYC, she’s way too chicken to go for it—until her best friend signs her up. With no excuses left, Char heads out to the city, taking the girl of her dreams with her.

Five nights under the city lights could give Amarie and Char the happily-ever-after they’ve always wanted, but a devastating diagnosis and once-in-a-lifetime opportunity could send it all crashing down.

Any Other Love is a f/f romance.

Behind the Scenes

Finding f/f stock photos is really difficult; finding f/f stock photos featuring a dark-skinned Latina with curly dark hair and a pale white girl with teal hair is damn near impossible. It was also really hard to find stock photos that weren’t better suited for erotica. After countless hours scouring multiple stock photo websites, I narrowed it down to a few (which you can see on my Any Other Love Pinterest board).

Then I talked with my cover designer, Chelsea of CJPB Designs. Together we decided on an image, and then Chelsea made pure magic. She also made me cry happy tears the first time I saw her mockup.

Pre-order Any Other Love Now

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Read an Excerpt: Chapter 1

I’ll Go Down Swinging My Cane

Photo by Chris Barbalis on Unsplash

When I got sick 10 years ago, I wasn’t planning on getting sick. I was actually planning to grow my web design business, save up the good salary I was making, and have a family. I wanted three kids. I’d only just started dating Mike, so I can’t say I was planning on marrying him, but I was an 18-year-old woman with hopes and dreams. I didn’t plan on getting sick. My goal was not to leave the workforce and become homebound because of my illness. I wanted to travel, to eventually set down roots and buy a house. I didn’t plan on going on state insurance because my husband and I couldn’t afford his company’s plan. I didn’t foresee setting aside my dream of having a family.

Let me be clear: I love my life. I’m happy that, even though I’ve lost a lot, I have been able to pursue my other dream—being a storyteller—even while bedridden. But I did not plan on getting sick.

No one does.

Mothers don’t hope to give birth to a baby who loses a kidney before he can even walk. Veterans don’t think they’ll spend their retirement years battling cancer instead of enjoying their grandchildren. Hardworking women who once worked multiple jobs don’t pencil in getting emphysema and pneumonia on their schedule.

But it happens, because life happens.

Today the Senate voted to continue working to repeal Obamacare and replace it with Trumpcare. The proposed bill blocks people with pre-existing conditions from getting insurance, takes away funding from state insurance that helps low-income people, and all but cripples healthcare assistance for the elderly and disabled.

All of this right smack in the middle of my disease changing.

Aside from worrying about family members and friends who will definitely be affected by the Senate’s decision today—possibly mortally so—I’m concerned about me. Because not a day goes by that I don’t wonder how different things might be for me if I hadn’t gotten sick. Would I have a mortgage and three kids? Ironically, if I hadn’t gotten sick, I could afford to pay for my healthcare.

I didn’t get a chance to really blog about it, but I’m having bladder and nerve issues that may be related to my UCTD—that may indicate that it’s developing into Lupus. I’m waiting on labs that my new rheumatologist ordered to check on my kidneys. I’ll probably be seeing a urologist to figure out what’s going on with my bladder; a neurologist ruled out carpal tunnel and said she thinks my nerve pain is from my autoimmune disease. My rheumatologist said that Plaquenil can be great for some things but not others; I may be looking at adding another medication to my regimen.

More tests, followups, and medications that I cannot afford out of pocket.

Under Trumpcare, I’d be blocked from getting insurance because of my pre-existing condition. Right now, I truly don’t know what’s going to happen to me.

And I’m trying like hell right now to not think about the people I know who will actually die without their medications and treatments. Because if I do, I won’t be able to breathe.

Today my country made a shameful, disgusting decision—all because part of the government can’t stand that a black president dared to try to help sick, disabled, and low-income people. They can’t bear to let Obamacare exist, just like they couldn’t bear to allow the original bill to pass. Instead of trying to fix the things that are wrong with Obamacare—like the annual fee for uninsured people that, ironically enough, the GOP helped create because they bickered over the original bill—they’d rather burn it all down, out of spite. They’d rather not examine the exorbitant cost of healthcare and medication in this country. And now 24 to 32 million Americans face losing healthcare. Of those 32 million, a good percent of them will die without it.

I cried all afternoon. My eyes are swollen, my heart is broken, and my autoimmune disease continues to attack my connective tissues, nerves, and bladder. I don’t know what’s going to happen to me or my loved ones. I keep trying to find some hope tonight, something to hold onto. Because I’m one step closer to losing my healthcare, but it’s not over yet.

Introducing Blurb Writing Services for Authors

Blurb Writing Services

I’m so excited to announce that I’m hanging up a shingle for blurb writing services. Writing the blurb—or product description—can be the hardest part of the publication process for authors. I have to admit that I actually enjoy writing blurbs; sometimes I even write them before I’ve written the book!

If you’d like me to help you make your blurb awesome, take a look through my books to get an idea of my style. Then check out my services page for my rates and more details!

You can also email me directly at elizabethbaronebooks@gmail.com.

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.

My Autoimmune Disease is Getting on My Nerves… Literally

Photo by Matheus Ferrero on Unsplash

I had a nerve conduction test with my new neurologist yesterday. The test was to see if the numbness, burning, and tingling in my hands is because of carpal tunnel. I was referred by my old rheumatologist.

I liked Dr. Z instantly. She is straight to the point, but really nice. Mike’s been seeing her, so I was already familiar with her and right at ease. Still, I was a bit nervous. Since my old rheumatologist referred me back in April, my symptoms have progressed.

  • the tip of my right index finger has a constant burning sensation
  • the area beneath my thumb on my left palm goes into spasms
  • my feet now get burning and tingling sensations

I had a feeling I wasn’t dealing with carpal tunnel.

During the test, Dr. Z and I chatted about my symptoms, my autoimmune disease, and which doctors I’ve seen. Even though she can seem brisk because she gets right down to things, I found her very warm and personable.

When the test was over, she explained how it worked. Basically, the computer measures how long it takes the electric stimulation to get from Point A to Point B. She showed me the normal ranges and where mine are: normal.

The good news is, she said I don’t have carpal tunnel.

The bad news is, she said it’s likely my autoimmune disease attacking my nerves.

In further good news, Dr. Z said there’s no nerve damage yet. She only tested my hands, and told me that if I’m still having the sensations in my feet in four weeks, to come back. (Since it’s a new symptom, she prefers to wait another month before testing.)

Next week I see my new rheumatologist. I really hope she can put these puzzle pieces together; neither bladder inflammation nor nervous system problems are really a UCTD thing. They’re more of a Lupus thing, and since Dr. S had said my UCTD could be pre-Lupus, I’m a little concerned.

Now that my joint pain is under control and I’m not bedridden or dependent on Mike to help me get dressed, I’d really like to address these other symptoms. I just hope that my new rheumatologist is willing to figure this out with me.

Autoimmune Diseases Suck

Photo by Hailey Kean on Unsplash

One of the things that suck the most about living with an autoimmune disease is the unexplainable symptoms that put your body under siege. Like, for example, feeling like you have a UTI—when you don’t.

It starts out of nowhere. You feel a burning sensation in your bladder. It also feels like you really need to pee. When you go, though, you only urinate a teeny tiny bit. The burning only eases a little.

It happens again and again, so you figure you must have a UTI. You make an appointment with your doctor. They run a urine culture… and it comes back negative. No infection. There’s nothing wrong with you.

But it keeps happening.

Regularly.

And every time, there’s no infection.

None of my doctors have ever been able to explain this to me. I’ve just learned to live with it. I had a tiny flare a few weeks ago, and a few weeks before that. Last night, though, I had a major flare.

For hours, I was miserable. I desperately looked it up, trying to find some kind of remedy. (When you have a UTI, you can get antibiotics from your doctor. So what do you do when you feel like you have a UTI but you don’t?) I found information about interstitial cystitis and Lupus cystitis, both of which have symptoms like what I experience.

“Cystitis” means inflammation in the bladder. Usually it’s caused by bacteria, in which case it’s a UTI.

Because I have UCTD that could be pre-Lupus, I try to note any changes in my “normal.” A few years ago, when I had another bad flare of this weird non-UTI, my doctor at the time found blood and protein in my urine. No one was ever able to explain why to me.

I suspect it’s yet another piece of the puzzle—a puzzle that’s slowly taken shape over the last decade.

I see my new rheumatologist next Thursday. Who knows? Maybe her fresh eyes will help make sense of all this.

In the meantime, I read on Mayo Clinic that taking NSAIDs and an antihistamine could help ease cystitis. It worked like a charm; I still feel dull burning, but it’s way more comfortable than it was.

Autoimmune diseases are so fun. 🙄

An Indefinite Hiatus from Twitter

Photo by Christin Hume on Unsplash

Almost a week ago, I decided to take an indefinite hiatus from Twitter. I haven’t looked back since.

For many reasons, I just don’t feel comfortable using Twitter anymore. It’s definitely not the same place it was back when I first joined. And, to be completely honest, I made myself a promise back when I started my career as an author.

I decided that, if any part of this ever stopped feeling good, I’d stop immediately.

Twitter hasn’t felt good for me in a long time. I straight up get nauseous when it’s time to check my timeline or mentions, wondering Now what? Wondering who’s going to be stomping on #OwnVoices authors while demanding more diversity, or who’s going to be telling me I’m not queer enough or disabled enough. Wondering who’s going to wander into my mentions without actually reading my tweets and start ranting at me. I’ve witnessed authors drag other authors or even bloggers and readers, encouraging their thousands of followers to pile on.

If you stand up and say “This isn’t right,” if you don’t instantly block the “trash” people, you’re out, too. Twitter feels like the digital version of high school: “You can’t sit with us, especially if we see you sitting with her.”

I’m almost 29. I am far too old for these kinds of games. I’ve got lots of books I’d rather focus my energy on writing. Not to mention my energy is already lacking, thanks to a current flare.

I’ve tried taking regular Twitter breaks. I’ve tried paring down the number of people I follow. These things helped a little, but they weren’t enough in the long-term.

So I’ve decided I’m done.

I’d already decided to focus my time and money on Facebook. Now that I’ve connected my Facebook page to my reader group, it’s so much easier for me to manage everything. Through research, I know that Facebook is where I need to be if I want to connect with readers. Plus, I’ve made some lasting connections with other authors there.

Authors who are professional and courteous, even when they feel passionately about something.

From here on, my Twitter page will serve as an outpost. I will not be checking mentions or DMs. I have, however, unlocked my account again; I will be tweeting only when I have news to share, and it will usually be an auto-shared link to my blog.

I’m still on Facebook—and have a reader group—as well as Instagram. You can also join my email list.

In the words of the wise Steve Jobs:

Don’t let the noise of others’ opinions drown out your own inner voice. And most importantly, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.

It feels so good and quiet now, I can hear myself again.

The First Round of Any Other Love Edits

The first round of edits for Any Other Love are done! I finished the bulk of them around 2 a.m., then left a few things to tidy up after I got some rest. When you read straight through a 70,000-word novel in about five hours flat, your brain starts to melt.

Still, I prefer to do rounds of edits in one sitting. It’s kind of like cramming for a test, except I’m taking the test while binge-studying. All of the details stay fresh in my mind—even with autoimmune brain fog, haha—and I can flip back and forth between comments in the document.

I still have to write a new chapter to add to the beginning of the book. The first draft took for granted that not everyone will have read Just One More Minute. This new chapter will be a sort of second “meet cute” that catches readers up on Am and Char’s history.

I’ve sent the manuscript off to my CP for notes. Meanwhile I’ll be getting back to my work in progress.

Though I’m a little behind schedule, I’m still happy with how things are moving along. Just six weeks left ’til release day!

A Sudden Goodbye

Photo by Ross Findon on Unsplash

Yesterday my father-in-law told Mike that he got a letter saying that our rheumatologist was leaving the practice. I didn’t want it to be true, but I didn’t think my FIL was mistaken. So I called Dr. S’s office.

It’s true.

They couldn’t give me any information. The receptionist I spoke to said she honestly didn’t know. All the staff had been told was that it was personal. It was sudden. I asked about my appointment later this month, and she told me he was already gone.

I’ll be seeing one of the other rheumatologists that day instead.

I’m crushed.

I don’t know how to feel or what to expect from Dr. C. I don’t know if she’ll stick to Dr. S’s treatment plan. If she’ll change my diagnosis. If she’ll even take me seriously. Every time I see a new doctor, I have to start from zero. I have to convince them that, even though my labs are vague, I am legitimately sick.

Every single time.

This couldn’t come at a worse time. I’m dealing with new symptoms, that I thought were carpal tunnel but are now affecting my feet as well as my hands and wrists. There’s a chance that it could be my UCTD developing into Lupus. I need my rheumatologist, who has taken me seriously and worked very closely with me. Not a doctor I’m being shuffled off onto, who now has an even heavier load of patients.

I want to be optimistic. I really do. But it’s hard.