Can’t Win (Plaquenil, 1 Year)

My Christmas cactus that I got the same day I started Plaquenil.

Today I’ve been on Plaquenil for exactly one year. While Plaquenil and Prednisone worked really well for my joint pain, both gave me some unfavorable side effects. Prednisone made my blood sugar skyrocket and threw some of my other labs off, so I had to wean off it. Plaquenil did okay on its own, but for some reason the GI side effects—diarrhea, heartburn—just keep getting worse. I had to come down to one pill a day instead of two.

I’m feeling it.

My rheumatologist said that if I flare, she’ll put me back on Prednisone, so there’s a good chance I’ll be starting it soon. I want to feel better—and I really want my hands and hips back—but I’m scared of the high blood pressure, freaky blood sugar, and weight gain. So I may have been holding off on making that phone call.

It feels like I can’t win.

This may be TMI, but Plaquenil can be an outright asshole. At first it seemed like it wasn’t getting along with dairy, but now it seems to give me diarrhea randomly. Heartburn, too. You’d think those are minor side effects, but trust me, they can quickly ruin your day. And your night.

SIGH.

Still, I look at posts and pictures from a year ago, and I know these two medications have saved me, side effects be damned. It comes down to a choice: would I rather debilitating joint pain and fatigue, or random bouts of diarrhea and heartburn, paired with high blood pressure, blood sugar spikes and crashes, and hot flashes?

via GIPHY

I’m trying to hang in there until my rheumatology appointment; playing phone tag is not my idea of fun, and I get shitty cell service in my apartment, which makes it even worse. I’d rather speak to her in person and go over our options. (She’s wonderful on the phone, too, but connecting is always a challenge.)

My appointment is almost two weeks away, though, so I’m gonna have to call.

It doesn’t help that I’m facing losing my health insurance, but that’s a whole other post. The gist of it is, my state changed its income regulations this year and we are now just a couple hundred dollars over the requirement. Yet we can’t afford a monthly premium and we sure as hell can’t afford appointments and prescriptions out of pocket. A friend suggested I can appeal the denial, but we weren’t denied—I’m stuck in an Access Health CT website loop. (If you live in my state, you know what I mean.) So that’s another phone call I’m dreading but have to make.

via GIPHY

It’ll work out, though. In the meantime it’s all about managing my pain and anxiety.

On the plus side, if I start Prednisone again, I’ll be able to take notes for my classes. (My hands have not been digging this whole pen holding thing.) I’ll also be able to type faster.

And did I mention that my beautiful Christmas cactus is now a year old? It’s now so full and there are several vibrant blooms (with dozens more budding). A month ago, it didn’t seem like it was going to bloom at all. A year ago, I wasn’t sure I could keep it alive. (I’m all right with succulents, but this one came from a pharmacy and I didn’t know how it would do.)

There’s a metaphor in here about patience and faith. I think.

What Does It Mean to Have Undifferentiated Connective Tissue Disease?

Photo by Vladislav Muslakov on Unsplash

In December 2016, I was diagnosed with Undifferentiated Connective Tissue Disease (UCTD). I’d been suffering from symptoms for a decade, and the diagnosis was a relief. Finally, I could start some kind of treatment and maybe get some of my life back!

There are a lot of misconceptions about UCTD, and autoimmune diseases in general. Part of the problem is, we don’t know a whole lot about them. We do know that the immune system gets confused and starts attacking healthy tissue. This can cause a lot of problems.

My disease, UCTD, is like the center of a three-way Venn diagram, with Rheumatoid Arthritis, Sjogren’s Syndrome, and Lupus the three overlapping circles. UCTD is at the center, meaning people with UCTD have symptoms from all three of these awful diseases.

It’s the best of both worlds.

The “undifferentiated” part means that the patient is presenting symptoms from all three diseases and their blood work doesn’t point clearly to any one disease. My symptoms and labs lean more toward Lupus. I have:

  • joint pain and stiffness
  • fatigue
  • dry eyes and mouth
  • hair loss
  • numbness and tingling
  • anti-double-stranded DNA (anti-dsDNA)
  • positive antinuclear antibody (ANA)

Sometimes I have bladder and GI issues, but it’s unclear whether they’re related.

People with UCTD sometimes go on to fully develop one (or more) of these diseases. Sometimes UCTD just stays put. It can also go away entirely. My rheumatologist is monitoring me for kidney involvement, which is how we’ll know if my UCTD is developing into Lupus.

In all likelihood, my UCTD is here to stay; I’ve had it for over a decade now and it only seems to be getting worse, not better. Since my labs have been stable, though, it’s also likely that I won’t develop Lupus.

This doesn’t mean that UCTD is at all mild. Though it doesn’t involve organ damage, the joint pain and other symptoms can be debilitating. When I’m flaring, I’m mostly homebound, or even bedridden.

To treat my disease, I take 200 mg of Plaquenil and 500 mg of Naprosyn twice a day. I also take Tramadol as needed. My rheumatologist is trying to avoid putting me back on Prednisone because its long-term side effects are pretty nasty, and I was just on it for nine months. Unfortunately, I’ve been flaring since I stopped Prednisone completely. If the Naprosyn doesn’t help my joint pain and stiffness, we’ll try something else.

It’s also important for me to eat right, get plenty of sleep, manage stress, and exercise as much as possible.

Even though having UCTD has been quite the adjustment, I’m learning to live around it. I listen to my body, resting when I need to and being careful not to overdo it. I’m also lucky to have Mike, who cares for me so tenderly and makes me laugh even in the worst of it.

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Now Available: Any Other Love

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.

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Book Extras

Sample · Playlist · Meet Amarie · Meet Char

Live Reading: Any Other Love

In case you missed it, here’s my live reading from Any Other Love on my Facebook author page. Like my page so you never miss future videos!

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.

Now Available

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Why I Wrote Any Other Love

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.

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.


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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.

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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.

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. 🙄

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.

Summer Flare Makes Me Feel Fine

Photo by Erik-Jan Leusink on Unsplash

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.

via GIPHY

Still, a few good things happened yesterday:

  • The healthcare bill vote has been delayed because the GOP didn’t have enough support. It’s not dead and bloated, but we blocked that son of a bitch. And we’ll keep blocking it.
  • I crossed 20,000 words for my WIP.
  • 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.