My latest book baby is out in the world! It was really hard to let go of Amarie and Char—or Chamarie, the ‘ship name my CP gave them. I could’ve written another 75K words about them just living their lives. Fortunately for you, I had a deadline to meet, and didn’t want to upset the Amazon gods, so I forced myself to “be done with it,” as Skye Taylor says.
And now my spoonie, f/f, small town romance is yours.
With just three days ’til Any Other Love hits the shelves, I thought I’d share a bit more behind why I wrote this book.
Any Other Love is my first bisexual/lesbian, f/f romance. Even though I chose a partner who happens to be a dude, being bisexual is still a huge part of me. Unfortunately, there is a lot of misinformation, stigma, and prejudice surrounding bi people. There also isn’t much representation of bi people on the shelves—especially of bi people in m/f relationships. When I met Amarie and Char in Just One More Minute, I knew they had to be together, and writing their book became a perfect opportunity for me to contribute to proper bi rep in literature.
It also served as an opportunity for me to represent people with invisible illnesses. Like me, Amarie lives with Undifferentiated Connective Tissue Disease (UCTD). I wanted to tell some of my story, and show that even though UCTD and other autoimmune diseases can be debilitating and throw your life off track, you can still live a fulfilling life. You just might have to live at a different pace. Many of Amarie’s struggles in the book were inspired by my own experiences.
I’m not sure if I’ll publish more f/f romance; while I love writing it, my writing is a business and I have bills to pay. So far, my pre-orders have been low—but I’m still so very proud of this book and glad that I put it out there. If my production schedule allows, I have even more f/f romance stories I’d like to tell. It’ll depend on how Any Other Love sells after release and whether I can fit more projects in while sticking to a steady release schedule.
It’s my hope, though, that Any Other Love will resonate with readers. I hope that it’ll show the world that being bisexual is not a state of confusion, a fad, or a sexy plot device. I want to show people that having an invisible chronic illness and disability isn’t laziness, inspiration porn, or attention-seeking. Mostly, I just want to show the world that two women can fall in love and live happily ever after—even when life isn’t perfect.
PRE-ORDER ANY OTHER LOVE NOW
Any Other Love is available at a special pre-sale price of only $0.99! Pre-order now and the ebook will be delivered to the device of your choice on August 21st.
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.
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.
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.
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.
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 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.
I’ve been flaring for just about two weeks now. Yesterday was particularly bad. I ended up calling it a day early and resting on the couch.
I think it has to do with the weather; the temps here have been in the low 70s, getting pretty chilly some nights. It’s been pretty miserable. After so many days of pain, I become convinced that I’ve never had pain-free days and never will again. Pain is smothering like that.
I got some potentially good news about a family member.
That’s how I’ve been getting through this flare. Focusing on the good. That and Advil twice a day, Tramadol at night. I haven’t really been sleeping, either, but last night I finally slept decently. Sheer exhaustion? Maybe. But I’d like to think that since my mind was eased a bit, I could burrow through the pain and rest.
I hate summer flares. They don’t happen often. My last was a couple years ago. I really didn’t expect one this summer, since Plaquenil has been working so well for me. Hopefully it’s just a weather thing—maybe we’ll just need to adjust my meds. I see my primary this week and my rheumatologist at the end of the month, so we’ll see.
Chronically Creative: Creativity and Lifestyle Tips for Spoonies
I say all the time that, while I’d definitely rather not be chronically ill, my disease did shove me onto the path of being an author. Before I got sick, I was only dancing around writing; I wrote for myself and sometimes posted things online, while working 10-16 hours a day as a web designer and social media consultant. When I had to leave the workforce, I started writing full-time. I was laid up most of the time anyway; I might as well be productive.
Since then, I’ve discovered lots of tools and tricks to assist me in my career. I’d like to start sharing them weekly, as well as interviews with other creative spoonies and some lifestyle tips. I’ve been wanting to do this for a while, but I’m kind of terrible at keeping schedules and staying consistent—mostly because being chronically ill is a full-time job in and of itself. So these Chronically Creative posts might not be weekly, but if you enjoy them and find them useful, I’ll try my best to do them as often as possible.
This week I’m sharing how I set up my own couch workstation or office.
Disclosure: The links in this post are Amazon affiliate links. I earn a small commission from your purchase, which goes directly to my writing business. Your support is much appreciated!
Since I’m often laid up on my couch with an ice pack, heating pad, or hell, my electric blanket, I’ve been doing most of my writing there. I’ve had to find a balance between being comfortable and creating an ergonomic setup to prevent any further damage to my joints.
I work on a MacBook Pro, with my couch reclined just enough so that my legs and feet are propped up. Behind my head, I tuck a flat throw pillow for support; otherwise I tend to lean forward, especially when I’m super into what I’m writing. I typically wear my wrist braces while using the computer, and often have my TENS machine handy for a nice massage on whichever joints are being assholes that day. Since painkillers tend to make me loopy or sleepy, I try to use other methods of pain management while working, which I’ll share as well.
Please be sure to consult your own doctor to create the best setup for your individual needs.
Over the years I’ve tried many wrist braces, but the only ones I can stand wearing are 3M’s Futuro for Her. I originally found them at Target. Unfortunately, you have to purchase the left and right braces separately—though I do suppose that’s because the average person has arthritis or carpal tunnel in one or the other.
They come in black or pastel blue; mine are somewhere between white and blue because I’ve bleached the hell out of them. My hands tend to get sweaty when I sleep with them on, okay? Not to mention I don’t have washer/dryer hookup in my apartment, so when I’m in a pinch I soak them in a bucket of bleach in my tub.
I can’t recommend these enough. I’ve had them for years and they’re well past due for a retirement and replacement. Previous braces I’ve had were too scratchy or immobilized my fingers too much to type. These keep my wrists straight so that I can continue using my laptop. (Someday I’ll get me a fancy iMac, with its sexy ergonomic keyboard and mouse. Someday!)
I bought my first laptop back in 2006—a clunky Gateway that I was super proud of. I was living with my grandparents and didn’t have a desk at the time, so I often worked on a TV tray in the living room or propped up in my bed. I finally caved and bought a ridiculously flimsy plastic lap desk at Barnes & Noble. It eventually cracked and I replaced it with a laptop desk on wheels that I could use from the couch. I still needed something for when I was bedridden, though, so I finally broke down and got a new lap desk.
It’s so old, I honestly couldn’t tell you what brand it is or where I got it. Probably Target, because I’m a junkie. Mine is like a vinyl, and not really ideal for keeping your laptop cool. When we got my sweet Biz Noni a laptop, my sister and I bought her a lap desk with a wooden surface. I’m not sure of the brand either, but this one is pretty close, as well as comparable in price.
Between my wrist braces and lap desk, I’ve got the perfect (mostly) ergonomic setup right in my living room. The lap desk can be tucked away behind my accent table, and my laptop can be put away in my office. (Eventually I’ll do a post on my office setup—but first I need to get in there and reorganize, because it’s become a disaster area again since I started working on the couch.)
Ideally, I’d have an iMac on an actual desk, with a nice comfy chair. But this setup works for me for now, and that’s what’s important. Like I said, I also tuck a pillow behind my head to keep from straining my neck and shoulders. Sometimes I take my laptop, desk chair, and Ergobeads wrist rest and work from the kitchen table.
They also make a cushion for your mouse, but I don’t have mine anymore since I haven’t use a mouse in ages. I absolutely love my Ergobeads and highly recommend them, as they’re supportive even if you don’t have wrist braces and are working from a laptop or even using a regular keyboard.
In case you’re curious, this is my office chair.
I originally purchased mine last year from Walmart, which got it from Overstock. It appears to be only available through third-party retailers now. It’s not quite as shaped to my back as I’d hoped, but it’s still pretty comfortable—especially considering it was about $140, which is cheap for an office chair IMHO. I got it to go with the desk my aunt gave me, but unfortunately the seat is too wide, so I usually use it with my writer’s desk hutch thing. Brain fog is hiding the actual name for both desks right now, so I’ll try to update this when it comes to me.
I’m going to keep this section short and sweet, as this post has gone well over 1,000 words and I’d originally planned on it being much shorter.
Because I get a limited supply of Tramadol (not to mention it tends to be binding on the GI system), I try to use non-narcotic pain management during the day. Never mind that Tramadol can make me woozy like I’ve had a glass of wine, and some of the stronger painkillers make me outright loopy or sleepy.
My joint pain is migratory, so it’s important that I have a medicine that can target all of it at once or different tools that I can use in different areas. Hands down, my favorite is my TENS machine. I got mine a couple years ago at the suggestion of my friend Melanie, and it’s been a lifesaver. It’s so small and discreet, I’ve even taken it with me to doctors’ appointments, while running errands, and on trips.
I also have a heating pad that can be used for moist heat, too, using a special insert. I learned to appreciate TENS machines and moist heat packs during physical therapy. While PT didn’t help my hip, those sessions at the end were heavenly.
The cover is removable and washable, and the pad itself is super flexible. I’ve tied it around my waist to use on my lower back, and my leg and waist to use on my hip.
When multiple joints hurt and I’m not going anywhere that I will mind the spicy scent, I use Tiger Balm. My rheumatologist was actually quite pleased to hear that it’s sold here in the States and that I use it frequently.
I prefer the clear balm, because it doesn’t stain and it’s just as potent as the red. It does have a strong scent, though, so I’m not a huge fan of wearing it while out and about.
Last but not least, my longtime go-to for discreet and long lasting pain management are ThermaCare patches and heatwraps. Unfortunately, they stopped making the wrist ones, though I can sometimes find the CVS version. I live by the multi-purpose patches, which work perfectly for my hips.
I like these because the heat doesn’t stop if I have to get up or run out. Though I usually wear them to bed, they’re just as handy during my workday.
Did you find my tips useful? Please let me know! I hope you enjoyed this post. Let me know in the comments if you have requests for future Chronically Creative posts.
I’ve been taking Plaquenil and Prednisone for my UCTD for over four months now. For a little while, I was having some moderate anxiety: fatigue, feeling frozen, heaviness in my legs. I thought it might be Plaquenil (or even Tramadol withdrawal), but I haven’t had any of those symptoms in a while and I’m still taking Plaquenil (with Tramadol as needed). I think I might’ve freaked myself out about it, too, and it sort of became this brutal cycle. But my anxiety is relatively tame and my meds are working—all good things.
The temperatures and barometric pressure have been all over the place lately, as usual in New England. It snowed in March and we’ve been getting rain this month, along with random hot days. This has been killing me, but the difference now is—thanks to Plaquenil and Prednisone—I just take some Advil and Tramadol, and it’s enough. Usually, anyway.
Sometimes it’s not.
I’ve been having lots of trouble with my wrists and hands lately. For the past decade, I’ve struggled with severe pain in all of the joints in my hands, but this is a different ball game entirely. For quite some time now, I’ve been getting numbness in my ring and little fingers (which I’ve been ignoring, haha). In the past few weeks, though, it’s progressed to burning, tingling, and icy-weird-ness in both of my wrists and all throughout my hands. It sounds like carpal tunnel, which could easily be caused by the inflammation in my tendons.
I kinda always knew this would happen, eventually. I mean, I am an author, and before that I was a web designer. There are few hours of the day that I’m not hacking away at the keyboard. I guess I just thought I was years away from having to worry about it. Then again, the possibility was mentioned to me a decade ago, so I guess it would’ve been years away then. 😂
The only thing that really seems to help are my wrist braces, which I usually try to wear while using the computer for long periods of time. For the longest time, I was sleeping in them and that seemed to help, but I’d stopped because my wrists weren’t hurting anymore. Now I’m back to wearing them again, and I’m even bringing them everywhere with me because I need them almost all the time. It’s not a big deal, per se, but it’s kind of odd—to me, anyway—how quickly this has progressed. I had the numbness for like a year or so and then bam! Tingling and burning.
I’ve been meaning to ask my rheumatologist, but my appointment keeps getting bumped back for one reason or another. I see him this week, though, so we’ll see what he says.
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Aside from weather-related flareups and possible CTS, I’m doing okay. I’ve been super tired lately, so I’m wondering if my B12, D, or iron levels are low again—spoiler alert: they usually are—but even that’s manageable with cat naps, afternoon teas, and my old fallback Emergen-C.
I’m looking forward to the weeks ahead as the weather continues to warm and I’m able to get out and do more. Last week I went to the zoo with Sandy and the kids; a few weeks before that, on a random nice winter day, I walked a mile.