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

NaNoWriMo Week 1 Wrap-Up!

via Unsplash
via Unsplash

The first week of NaNoWriMo is officially behind us now! I have a lot going on in my personal life (nasty flareup, financial stress, very sick relative I’m worried about), so I haven’t been writing as much as I’d like to. Still, I’m pretty proud of what I’ve accomplished so far.

Title: Twisted Broken Strings
Series: South of Forever, Book 4
Word Count Goal: 75,000
Current Word Count: 9,078 10,021

Admittedly, I’d written about 4K before NaNo started. Listen. Every month is National Novel Writing Month for me, okay? My production schedule waits for no NaNo, and all that. I’m just grateful that things fell this way so I can actually participate this year.

😂 I’M A PUBLISHED AUTHOR I DO WHAT I WANT DON’T JUDGE ME 😂

That said, my word count goal for this book is high. 75K?! I tried to whittle it down, I really did. The other SOF books are about 60K each, give or take. But Krista and Perry’s story, well, it needed a little more than that. There’s no way I’ll write 75K by the end of this month, though. Not with the condition my wrists—and the rest of my joints—are in. I do think I’ll hit the NaNo goal of 50K, though. Slow and steady wins this race, my friends. Hell, I’ll even write 54K, just to make up for that 4K I wrote before the official start. 😉

With every novel I write, I try to learn a new technique. Here’s what I’m doing with Twisted Broken Strings! (Possible spoiler alerts, so reader beware.)

  • Giving an antagonist a “save the cat” redeeming quality or two. So far, we’ve come to hate Saul (lead singer of King Riley), and we have a lot of reason to. But we’ve barely gotten to really know him—the real Saul. Krista gives us that perspective. Saul is her brother, and he’s made a lot of mistakes, but she knows he isn’t all bad. She’s just as concerned for him as she is for Jett and Max. I’m hoping that softens him a bit in my readers’ eyes. Krista reflects on good deeds he’s done and her worry for his sobriety (and safety).
  • “We’ll never speak of this again.” I can’t remember the name of this writing technique—brain fog, the horrors!—but basically something happens that the reader and/or other characters aren’t aware of that no one wants to talk about. Between SOF3 and SOF4, South of Forever goes on a regional headliner to promote their EP (and to shake off the disastrous tour with King Riley). This happens off-screen, and during that time, a thing happens that affects the plot of SOF4—a lot. It’s hinted at a couple times, and eventually revealed to the reader so that the reader can commiserate with Krista. This wasn’t part of my original outline, so I’m pantsing the big reveal. After talking with my CP, I determined that I definitely don’t want to reveal it too early… but also don’t want to wait until the very end, either.
  • #OwnVoices. Twisted Broken Strings is my very first #OwnVoices novel—my MC Krista is disabled, like me, dealing with similar struggles I had in college and have now. There’s no magic cure for her at the end; where I’m still undiagnosed, I’ve diagnosed her with Lupus (since that’s a possibility for me), which is an autoimmune disease with no cure. Krista’s Lupus isn’t the main plot, but it impacts the story a lot. It’s simultaneously cathartic and really freakin’ hard to write about this. I really want to show people that just because you don’t “look” sick, it doesn’t mean you’re not struggling—and you can also lead a fulfilling life. I’ve had #OwnVoices supporting characters before, and included bits from different areas of my own life in several novels, but never like this.

So despite gimping along, I’m pretty satisfied with this week’s progress.

How many words have you written so far this week? Tell me where you’re at in the comments below!


ED: I ended up doing some writing today, so I’ve updated this post to reflect my new word count for the week!

5 Last-Minute Tips for Your #NaNoWriMo Novel

via Unsplash
via Unsplash

National Novel Writing Month (NaNoWriMo for short) starts tomorrow, and whether you’re a procrastinator at heart, joining at the last minute, or just coming off another project, you’re totally scrambling. Have no fear! I’ve done a few NaNos—my debut novel was one of my past projects—and as of the 18th I’ll have 10 published novels under my belt, so I’ve got some quick and easy tips for you to make a comeback.

Don’t know what to write about?

Sometimes just coming up with a plot feels impossible. Or maybe you’ve got too many ideas. Try the method I used to write my next release, Just One More Minute.

  • Pull up Google and search for tropes in your favorite genre. (I typed in “romance fiction tropes” and found Mindy Klasky’s super detailed list.)
  • Look through as many lists as possible. Grab a piece of paper and jot down the ones that sound intriguing to you. (I really liked the “enemies to lovers” and “office romance” tropes.)
  • Go through your list. Are there any two or three tropes that might fit together? Do they work with any ideas you might already have?
  • Write up a quick synopsis in one to three sentences using the tropes you’ve chosen.

Bam! You’ve got a novel.

(Need a little more guidance? See this post.)

Need a super simple plot structure?

When I first started writing longer fiction, I booed anything remotely resembling an outline. Too many years having roman numerals driven into my head, I guess. I wrote by the seat of my pants, which was a lot of fun, but I had trouble finishing anything longer than 10,000 words. It wasn’t until I combined plotting and pantsing that I created a process that works best for me.

One thing I’ve found really useful is the classic three-act plot structure. Harlequin has a fantastic breakdown of this, along with a dissection of the movie Mean Girls as an example. There are all kinds of plot structures, but I’ve found the three-act one to work best for me; that way, I don’t try to cram too much into one novel (though I do often have one or more subplots running, and usually have to do some wiggling to work them into the three-act structure).

I especially love how Harlequin explains each section, and I found analyzing Mean Girls really helped clarify things.

Bonus points if you can sneak in a try/fail cycle into your Act II!

Running out of character names?

I have one rule of thumb when it comes to naming my characters: don’t name two characters with the same first letter. I’m a speed reader, so when I’m in the zone, I get really thrown off if there are three characters whose names start with the letter S and five whose names all start with J. I heard somewhere that this isn’t good practice, as most readers get confused. Of course, even if the first few character names come easily, it gets harder and harder to find fitting names.

That’s when I turn to Google and start looking for “popular girls names 2016,” “girls names that start with a c,” or even just “girls names.” I especially like Nameberry and BabyCenter, since their sites are well organized. I just scroll through until I land on something that screams my character to me.

For last names, I tend to jack them from real people I know or have met. I think real last names are more interesting than any you could look up online. (Skimming through “common Puerto Rican surnames,” for example, can get repetitive, but running through my Puerto Rican friends on Facebook gets me some really strong and unique last names.)

Worried you won’t finish?

Find someone who will hold you accountable. Whether it’s a friend, your blog readers, or another writer, tell them what you’re doing, your goal for the month, and how many words you want to write every day. Ask them to check in with you (or, my personal favorite, share your progress with your Twitter followers every evening).

In the past, I’ve even posted chapters on my blog or Wattpad as I’ve written. Having someone cheer you on is extremely helpful.

You can find local NaNoers by choosing a region in your account settings, then visiting the forums and checking the write-in schedule. Even if you never physically make it to an event, you can chat with other writers in your area right in the forums.

You can also add me on NaNoWriMo and follow me on Twitter. 😉

Don’t know how to start?

Sometimes that first sentence can be the most intimidating. Seasoned authors will tell you to “just start,” but it’s often easier said than done. If you’re staring at a blank page and that little blinking cursor is taunting you, try this.

Good novels are born from conflict; it keeps the writer churning out words and the reader turning pages. Instead of starting your book off by laying out the scene, throw your main character and another character right into it. Maybe there’s an argument, or something happens to throw off your protagonist’s entire day before they’ve even left the house. Keep throwing wrench after wrench into their plans, until you’re ready to introduce the main problem.

(Which, by the way, should be done in the first or second chapter.)

If your main character is busy putting out fires, you’ll never be stuck, and you’ll have plenty to work with.

Happy NaNoing!

XOXO,
Elizabeth Barone

Were these tips helpful? Do you have any last-minute NaNo tips? Let me know in the comments below!

NaNoWriMo 2015

NaNo-2015-Participant-BannerNaNoWriMo—National Novel Writing Month—starts in just a few weeks. During the month of November, novelists attempt to write 50,000 words in thirty days. It’s a marathon-style event that encourages people to write. I haven’t done it in years.

Usually, I’m already waist-deep in another writing project. This year, though, things are very different.

Depression got the best of me. I haven’t written anything in weeks. It’s a bitter cycle, because not writing makes me more depressed.

So I think it’s time to rectify this.

I’ve tried everything else. When I face the blank page, I still feel unmotivated and overwhelmed.

So a friend and I made a pact. We decided to participate in NaNoWriMo to get ourselves back on track.

Starting November 1st, I’m going to write every day—even if I only manage to lay down a couple of sentences.

Are you doing NaNoWriMo? Add me as a buddy!