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.

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.

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.

Pre-Order: Signed Any Other Love Paperbacks

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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.


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.

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Read an Excerpt: Chapter 1

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.

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.