Here and Queer: On Writing a Bi Romance Heroine

via Unsplash

*deep breath* There’s something you might not know about me.

I’m queer.

As in, LGBTQIA+. As in, bisexual (but I prefer queer). I’ve blogged about it before, and I’ve been out for years, but it’s not something I talk about often. Even though I’m proud as fuck to be bi—to be me—there’s another part of this story that is painful. Well, a few parts actually:

  • When I tried to come out to family, the first person I told said to me that there’s no such thing.
  • When I came out to my then-boyfriend (who was a complete scumbag anyway), all he could talk about was threesomes.
  • More recently, when discussing my sexuality with someone, they were all “Hold up. You can’t be queer. You married a dude!”

Thankfully, I had a fantastic support system when I came out: a whole bunch of queer people in my high school. We may have all drifted apart, as people tend to do after high school, but I’ll never, ever forget my friends Lisa*, Lacie*, Joy*, Phoebe*, and Starr*, who were all super supportive during the great LGBTQIA+ coming out party. (By the way, I’ve been searching desperately for Phoebe on Facebook, with no luck. I can’t remember her birth name or last name. I’ve been thinking about her a lot lately. I was one of very few people that she shared her name with and told she was trans, and I would love to know how she’s doing, how her story after high school unfolded.) This was before Twitter, so I can appreciate how very lucky I was to have such a support system.

Not many people are so fortunate.

via GIPHY

I’ve been thinking about my sexuality a lot lately. A lot. It’s extremely important to me that I don’t lose that piece of me. That it doesn’t get lost in my heterosexual marriage or these strange, dark times we’re living in.

Being queer is an extremely big part of who I am.

I knew that Krista, the heroine and main character of my work in progress Cruising with the Blues, would be queer. I also knew that she and Perry were meant to be. I’ve struggled so much with this novel, writing tens of thousands of words only to scrap them because I just couldn’t get it right. I think I was trying to do too much with one book: play matchmaker, address a few social issues, wrap up the series… You know, nothing major. 😅

In the very first draft I wrote, Krista was a bi woman struggling with depression. I wrote something like 5,000 words and then tossed it because it just didn’t feel right.

In my second try, Krista was a spoonie like me, only living with Lupus. (My disease is possibly pre-Lupus.) She was also bi. Again, I was trying to squeeze too much into one book. I threw away over 16,000 words, which stung.

With my third shot, I wrote another 6,000 or so words, cutting the mental and chronic illnesses. This time I approached the story from another angle, matchmaking Krista and Perry by using their shared desire to get their band mates into rehab. Once again, though, I was focusing too much on things outside of Krista, rather than on Krista herself. So I scrapped those words, too.

Altogether I’ve thrown out something like 20,000 words. Can you say ouch?

But fourth time’s the charm because this time around, I understand Krista a bit better. I now totally get why she’s so upset with Poppy for ditching their plans to share a cabin during the cruise.

Krista is in love with her best friend.

She’s also got a thing for Perry.

There have been two times in my life when I was in love with two people at the same time. It doesn’t seem fair that the heart can be so conflicted, but it happens. It’s a painful experience, something that you can’t just turn off—just like Krista’s and my sexuality.

While I’m still incorporating other elements into SOF4—getting Krista and Perry together, wrapping up the series, getting Jett and Max help—I’m focusing more on bisexuality and the stigma from all sides.

How non-queer people just don’t get how you can have feelings for and be attracted to both the opposite and the same gender.

How queer people often exclude bisexual people, writing us off as “confused” or “looking for attention.”

How you just don’t feel like you fit in with either the straight or gay world sometimes, or all the time.

This kind of erasure—from two opposite parts of your life—can be heartbreaking and confusing, to say the least.

By exploring Krista’s feelings for both Perry and Poppy, I’m hoping to give other bi people a safe haven where they can find characters they relate to. There are so few books out there with bi characters, and the few that do usually have them in same-sex relationships. I’m writing the book that I’ve desperately needed for years, damn it.

I wonder all the time if I’ll someday regret marrying a man. I love my husband with all of my heart, and I’m happily monogamous. Making the choice to be in a heterosexual relationship despite my still-very-much-alive attraction to the same sex is conflicting enough, without other people saying things like “But you’re married. You can’t be queer!”

To which I reply, “The hell I can’t!”

I’m over 6,000 words into Cruising with the Blues now. It’s both painfully and proudly #ownvoices—written based on my own experiences as a marginalized person.

(Side note: I feel kind of weird using the word “marginalized,” but I also feel that it’s important to call it like you see it. A lot of my bi friends have purposely assimilated into heterosexuality, because even though gay people are for the most part accepted by our culture, our society just doesn’t understand or accept bi people. And trans people, and ace people, and… *neverending sigh*)

The first 5,000 words came slowly, but now that I’ve realized where Krista is coming from, man am I on a roll.

Letting her shoulders relax, she melted back into the music. Perry moved with her, letting her set the pace and tone. His hands never wandered—even though she desperately wanted them to—and he kept a respectable distance between them. Still, he was close enough that she could feel the heat radiating off his body.

And something else.

Something like desire.

Or maybe she was just projecting.

via GIPHY

*Names have been changed to protect privacy.

You Don’t Know Exhausted Until

you-dont-know-%22exhausted%22I never followed up on my last health update (the one where I found out I was once again looking at a Lupus diagnosis). Since that post, I’ve gone into a full-throttle, super nasty flareup.

  • My pain has been steadily at 10/10 (8/10 at the lowest, with medication). I thought I had it under control after breaking up my Tramadol dose. Usually I take 100mg at bedtime, but I started taking 50mg in the morning and another 50mg at lunch instead, using my herbal medicine before bed to get me through the night. I got the idea to split my Tramadol from a friend, whose pain management doctor told her that Tramadol isn’t great for treating pain; you have to take it ahead of the pain—which I’ve long suspected. The downside to all of this Tramadol? TMI alert: I’ve been a little constipated, which I’m pretty sure is making my back pain worse.
  • Joint pain is symmetric, meaning both sides hurt. So both of my thumbs are painful and stiff, both knees, both elbows, etc. Oddly, my right side hurts more than the left in some cases; my right big toe, right hip, and right thumb have consistently been more swollen and painful than the left side. I suspect these joints all have bone spurs (Dr. Memet said she thought my toe did [both in the toe joint itself and the other nearby joints]—, my hip x-rays showed bone spurs, and my thumb feels exactly the same as the other joints do).
  • The pain is a hot ache and it radiates. But it also feels… bruised? There’s almost a throbbing, too; I can feel my joints swelling. It’s really hard to explain. Regardless, it feels fucking horrible.
  • My lower back is equally painful on each side, and very stiff. This morning Mike had to help me get dressed and put my slippers on. He had to help me sit and stand up multiple times. And every time I need to get something from one of our cabinets, he’s had to do it for me (our cabinets are underneath our counter—no overhead ones).
  • The pain wakes me up at night, multiple times. There have been a few nights where I couldn’t get comfortable and so didn’t sleep at all.
  • On top of the pain, I’m drained—no matter how much sleep I get. I’m not usually a napper, but I’ve been caving and taking naps. I’ve also been chugging Emergen-C like it’s my job. Neither that or coffee really help, though, so I’ve mostly been drinking plain water.
  • The only place I’m truly comfortable is on the couch. It curves nicely against my back and reclines, so I can get the pressure off my hips and knees too.
  • I need my cane while out and about—if I’m even up to leaving. I stayed home instead of going to a wedding reception this weekend. Today I basically haven’t moved from the couch, because walking and standing are sucky.

Since my last post, I found out that my anti-dsDNA was positive and pretty freakin’ high. A positive anti-dsDNA means:

  • there’s definitely something autoimmune going on
  • there’s a pretty good chance it’s Lupus
  • the immune system is attacking the DNA
  • the person is currently or about to be in a flareup
  • the higher the levels, the worse the flareup

My rheumatologist’s lab measures anything over a 10 as positive; my anti-dsDNA measured a 24. That’s more than double the normal level.

My rheumatologist said he doesn’t want to diagnose without a positive ANA, but I’ve found several medical journal articles that said doctors don’t need more than a positive anti-dsDNA to diagnose Lupus—especially with presenting symptoms. My rheumatologist said he was calling in Plaquenil, though—or so I thought. When I went to pick it up at my pharmacy, it wasn’t in. I checked the pharmacy several times, and they even checked other locations. No dice.

Honestly I’ve been so exhausted, not to mention tired of the medical merry-go-round, I haven’t called my rheumatologist’s office yet to see what happened with the ‘script. I was on the phone multiple times with them before and after my blood work came back, trying to resolve my bad appointment. I’m just sick of having to do all of this.

I have, however, been reading up on the anti-dsDNA, Lupus, and some other things.

  1. What Arthritis Pain Feels Like—It’s possible that I have both OA and RA (or Lupus). Dr. M told me I have bone spurs in multiple joints. However, some articles indicate that bone spurs can be caused by RA/autoimmune. It really depends on the author, as rheumatologists all have different opinions. Either way, this article describes my pain to a T.
  2. New Findings with Eppstein Barr Virus—I know one thing for sure: this all started after I had mono, which is caused by EBV. I thought this article was interesting, because even though it didn’t mention Lupus, it did mention some findings. For example, researchers believe that a healthy zinc level may keep chronic active EBV disease at bay. I’m wondering if my EBV is slowly evolving into Lupus. If so, could taking some of these supplements help keep flareups away? Or maybe it’s CAEBV? Chronic Fatigue Syndrome? Rheumatoid Arthritis? Lupus? Some combination of multiple or all of these? Can someone please get me some answers before I lose my mind? 😜
  3. Characterization and Treatment of CAEBV Disease—This article made me want to check my EBV levels; if nothing else, it’d be interesting to compare where they are during a flareup to their levels during remission.
  4. Understanding Lab Tests and Results for Lupus—This was the article that suggested rheumatologists only need positive anti-dsDNA and presenting symptoms to make a Lupus diagnosis and begin treatment.

    Anti-DsDNA is more specific to lupus than ANA and can be very valuable in making a diagnosis of lupus. […] If the anti-DsDNA levels are high, the disease is more likely to be active. There is either a current flare or a flare may be imminent.

  5. I’ve long been complaining about Connecticut healthcare. Recently I found another spoonie living in CT who, after years of getting nowhere, went to see a rheumatologist in Boston. Within a single office visit, he diagnosed her and began treatment. I’m starting to think it’s time to get an out-of-state opinion.
  6. She also has a post all about filing for disability, which really gave me hope because I thought after being rejected that there was no way I could get it. I know many people get rejected the first time and have to try again, try again, but I thought since I lost my diagnosis, I definitely didn’t have a chance. But it seems like, as long as you can prove your illness is affecting your ability to work—which it is—you can get disability.

I know I should’ve called both my primary and rheumatologist days ago, because even if they don’t feel like doing anything about it, at least this will be documented. It’s nearly time for a followup visit with my rheumatologist anyway, and I’m scheduled for a followup with my primary for November 17th. (Long story short: My primary wants me to come in every month in order to have my Tramadol refilled.) And my rheumatologist wanted to check my levels again in another month.

I’m out of ink (and can’t afford more right now, sigh); I’d really like to print off these articles as well as a list—my current symptoms, things I’ve tried, goals that I have, etc—and bring them in with me. I’ve started looking for rheumatologists in Boston who take my insurance (spoiler: there aren’t many), and I’m considering picking one and calling to make an appointment. But it’s a three-hour drive there, and we’re barely scraping by—never mind able to afford a trip to Massachusetts and back. I’m really starting to think it’s worth the risk, though.

I also need to get my medical records from Dr. Mongelluzzo (my former primary) and Dr. Greco (my first rheumatologist who retired, which was why I started seeing Dr. M); those records have blood work showing positive anti-dsDNA (and I’m pretty sure a positive ANA, too). I’d like copies for myself, rather than transferring them over. For one, it’s just good to have them. And two, I don’t trust Dr. S to actually read through them (nor do I trust Mongelluzzo’s office to actually fax them over, as I’ve had so many issues with them in the past; they’re very nice but extremely busy). I’d like to make copies of my copies for Dr. S, and highlight things that fit into the puzzle. Basically, I have to be my own detective and advocate.

The problem is, I need to get into Waterbury and sign a release form for each of them (the offices are across the city from each other). This is also a gas money issue. And, I have to pay for copies of my medical records from Dr. Mongelluzzo (I’m not sure about Greco’s office). A friend got copies of hers, and it was something like $2 a page—so I know my records are going to be hefty, since I was there for several years.

So maybe now you can see why I’m so doctor-fatigued. 😂

It’s all got to be done, though, if I’m ever going to get anywhere. I’d really like to start moving forward, because I’ve been in limbo for the past nine years. I mean, I dropped out of the university I was attending for my B.S. in Elementary Education because I was so sick. And I never went back. I’m still paying off those student loans. Even though I really love being an author, it’s not enough. We’re drowning here; I’m frustrated because I can’t work, and Mike is frustrated because his job doesn’t pay enough and he can’t seem to find anything else. It’s kind of funny because we both really want to take care of each other.

He insists that he can handle everything if he finds something better; I insist that, if only I could get better, I could work too and he wouldn’t have to stress it.

I keep hoping that if I work hard enough, write better books, and write enough books, we won’t even have to worry about it anymore. But the reality is, even if I became the best author in the world with the most published books ever, it’s not always possible to make a living. I mean, maybe I’m being cynical and negative, but someone has to be on the low end of the spectrum. Not everyone can be a NYT/USAT bestselling author or even mid-list.

Heavy sigh.

On the plus side, I’ve been pouring all of this frustration into my work in progress (SOF4). Speaking of, I broke 12K last night! *happy couch dance*

I should mention again that I have a GoFundMe page open and, if you’re an author looking for services or just want to help, you can donate and help us catch up on bills. Click here.

Anyway, I think I’ve burbled on enough for now. Thanks for listening. 💜

Elizabeth Barone