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

November 2016 News and Goals

via Unsplash
via Unsplash

Just One More Minute comes out in 12 days! You can pre-order your copy for only $0.99 here. Books2Read will either automagically detect your favorite retailer, or you can choose from their list.

It’s a beautiful thing indeed.

This month is already proving to be a tough one, so I’m trying to take it easy. Easier said than done, of course. I’m flaring hard, so pacing and resting are important. But I also have a release, which means promotion! And of course I’m writing SOF4 (see my latest update here).

Goals for November

  • Write at least 50K for Twisted Broken Strings (South of Forever, Book 4). (My total goal is 75K, but I’m taking it slow.)
  • Release Just One More Minute. Thank goodness for pre-order. I don’t have to lift a finger on release day, other than to change the price to $2.99. I’m also looking for bloggers who’d like to share Chapter 1 sometime this month, and maybe even review an ARC. If that sounds like you, you can sign up here.
  • Finish beta reading for my CP. She is seriously a doll; I’ve been taking way longer than forever on this and she’s been nothing but patient. The worst part is, I love her novel! Time is not my friend.

There are a lot of other things I’d like to do, but I’ll be grateful if I can accomplish these three. I’ve been scheduling important social media posts so that I don’t have to spend a lot of time on Twitter and Facebook (plus I can get some extra rest). I struggled a lot with doing this—in my silly mind, I felt like scheduling them was disingenuous. But Rachel Thompson and all the wonderful people in #bookmarketingchat assured me that it’s all still me, and that it’ll make my life so much easier. They were totally right.

Speaking of chats, I’d really like to make more of these. Unfortunately, by the time they start I’m usually shot for the day. That’s typically the hour that all I’m good for is curling up in front of the TV and fighting sleep. There are some really good ones, too, so it’s a bummer. If this sounds like you, let’s high five and make matching #TeamTiredAuthor T-shirts.

I’ve slowed way down with my reading. I still have the rest of Claire Contreras’s Hearts series, and my pre-order of J.C. Hannigan’s Rebel Heart came in and I can’t wait to re-read it! Plus I have about a dozen books I’ve bought but have yet to read. Reader/writer problems, am I right?

However, I’ve started writing morning pages again! I’m beyond broke, so I picked up an $0.88 composition notebook. My pages are not usually in the morning; often I’m scribbling in them just before bed, to try to alleviate my mind. Not to mention it kills my wrist and fingers. But I get those three pages done anyway.

There are a few writing books I’d like to pick up, especially Sean Platt and Johnny B. Truant’s The One with All the Writing Advice. I’m fascinated by the concept of cultural shorthand. I also realized I never finished Larry Brooks’s Story Engineering. I didn’t even make it halfway through, because there was so much to absorb. But I think I’m ready now.

So many books, so little time.

My GoFundMe page for donations and author services to help my husband and me catch up on bills is still up. I was able to pay a couple of bills thanks to your help, but we have a long way to go. We didn’t make our electricity bill, so we now owe that plus next month’s. I’m thinking of coming off the budget plan, because ours is set way higher than what we’re actually using, and keeping up with it is killing us. It’s only in the brutally cold January and February that we go over and it comes in handy. If you’re an author in need of budget-friendly services or would just like to help, you can donate here.

This month What Happens on Tour (South of Forever, Book 3) is part of Kobo’s Black Friday and Cyber Monday weekend sale. It will be $0.99 from November 22nd to 28th, no code required! And the first book in the series, Diving Into Him, is forever free (everywhere). So if you’ve been eyeing the South of Forever series and are a Kobo reader (you can even use their free app), now’s a great time to start. I recommend getting the free Book 1, then the $2.99 Book 2. Then when the sale goes live, pick up Book 3 for only $0.99! Check out the series page on Kobo here.

A lot of people ask me when I’ll have paperbacks in stock again. I have a few on hand in my office that I’m using as rewards for the GoFundMe. Eventually I’d like to get all of my books back in print, but here’s the thing: it’s less budget-friendly than publishing an ebook. If you’d like a paperback, please consider picking up an ebook copy and telling your friends. My hope is, once I get ahead of my bills, I can finally get started on paperbacks.

I think that’s it for now. To keep up with everything I’m doing, join my email list!

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!

This Is My #Paingry Face

photo-on-10-12-16-at-4-24-am

It’s five in the morning. My joints are bright hot fireballs of throbbing death. I’m exhausted and have been all day, but the pulsing ache in every single joint of my body is like an alarm clock blaring in my ear. When I’m in pain like this, all I can focus on is the pain. All I want to do is whimper. The only thing I can talk about is how much pain I’m in.

My chronic pain runs my life.

The thick gray smudges under my eyes, the tangled nest of curls bundled up on top of my head, the inward curve of my shoulders—all of it a portrait of the pain I live with when I don’t have a DMARD combatting the inflammation in my joints/tendons. And I’m frustrated all over again, because I’ve been denied those medications. And I’m really feeling it.

I got comfortable. I’d been on SSZ and maybe I took it for granted. Constant headaches and a perpetual metal taste in my mouth seem easy compared to what I’m feeling right now. Maybe I shouldn’t have complained. Maybe I should have kept swallowing the pills and taken what little relief they gave me. I was ungrateful, and now I’m paying the price. The warm summer months rolled in, easing my transition off SSZ. I went swimming. I ran errands. I cleaned my house.

Now I’m lucky I can move at all.

I hate the cold months. I know everyone is reveling in fall right now, but all I want to do is give those who are celebrating sweaters and Instagramming photos of leaves the stink eye. Because for me, October through May is hell unleashed.

If it hurts to die, this is exactly what it feels like.

I don’t mean to be melodramatic. It is five in the morning and I should be sleeping. I’m usually sleeping at this hour. I have places to go and things to do during normal morning hours, yet I will have to choose between resting and getting blood work done. My knees and hips hurt so badly, I feel like I need a wheelchair.

I’d go to the emergency room if I thought they could do anything.

What I need is a different DMARD and a hefty dose of Prednisone to get me through until it starts working. I need a doctor like the ER attending who knew that inflammation was my issue, even if my blood work said otherwise. I need someone like the PA I used to see, someone who listens and won’t give up. Dr. M was becoming that someone, but she left the practice. And now I just feel so fucking lonely and depleted.

I don’t know how I keep doing this. Living with this is the hardest thing I’ve ever done, hands down. And I’ve been through a lot of difficult things. I’m not saying I’d rather go through them again—they were eviscerating enough on their own, thank you—I’m just saying that this is so hard and I’m so tired. I’m out of spoons—emotionally, mentally, and physically.

I’m done yearning to be normal. It’s been nearly a decade. At this point,  it’s not going to happen. I just want some kind of quality of life. I don’t want to burst into tears because I’ve dropped the cap to my water bottle and can’t physically make it across the kitchen floor to retrieve it. I don’t want to feel lonely at almost 5am because my husband went to bed hours ago. I don’t want to slap a temporary painkiller Band-Aid on my gunshot wounds, hoping that Tramadol will bring my pain down to a 8/10. I don’t want to feel like I’m missing out while my husband, brother-in-law, and niece hang out at a gallery and I stay home because I feel like microwaved zombie.

I’m just so fucking tired.

I’m not going to do anything more drastic than smoking a cigarette, but I need all of the love, strength, and support that I can get right now. I feel almost cheesy asking for this, but if you can even just leave a comment with hugs, that would be so helpful.

This probably goes without saying, but I’m taking Wednesday off.

On the bright side, I wrote 400ish* words for SOF4, and it’s officially #OwnVoices because I’ve given Krista my enthesitis related arthritis. Tonight’s—this morning’s?—session was basically just a long description of how much everything hurts her, AKA me. Here’s a little snippet:

Hot twinges buried themselves in Krista’s knees, bringing the world into razor sharp focus. She winced, then quickly smoothed the expression on her face.

“We’ve got to do something,” Perry repeated. “The entire band’s gonna implode if we don’t handle this.” A large curled fist lightly smacked the palm of his other hand, punctuating his last few words.

Her cheeks twitched into an involuntary smile. His passion was endearing. “I’ll let you know,” she said softly, her shoulders curling inward. Sliding her phone from her pocket, she glanced at the time. Shit. It was time to get to class. She swallowed hard. She barely had the energy to walk there, never mind sit through the lecture.

“Hey,” Perry said, his voice low and soothingly warm. “You all right? Your cheeks are kinda flushed.”

Great. She inhaled through her nose, gathering her strength. “I’ve got to go.” With every ounce of energy, she pushed up from the bench. “I’ll talk to you later?”

He shrugged. “Sure thing.” He raised his coffee in a salute.

Turning, she forced herself to walk away like a normal person. Her joints protested, the ache deepening. If that was even possible. She gritted her teeth, stifling the scream rising in her throat. She was so tired—tired of being in pain, tired of trading her life for more rest. And now, with South of Forever in such a bad position, she was going to be even more tired.

* * *

Krista was in a bad mood when she finally got out of class. For one thing, it’d run fifteen minutes over. The pain in her knees had increased, as well as taken residence in her elbows and wrists. For some reason, the knuckle of her left thumb was aching, too—a hot, pulsing flare. Yet, from the outside, her body looked completely normal.

Her phone buzzed in her pocket. Stepping off to the side of the hall she was walking through, she fished it out and read the text from Poppy.

Where are you? We need to start recording. xx

The double exes were like a haphazard “LOL,” thrown in as insurance. Their sole purpose was to placate the terse, demanding tone of the other words. Krista was fluent in girl speak.

Sighing, she texted back a simple “OMW,” and resumed her trek toward the building exit. Her body protested with each step, hinges stuttering when they should have bent smoothly. By the time she got to the double doors, she’d made up her mind.

She opened the Uber app with a quick swipe and a tap, not even bothering to look at the screen. She knew her iPhone better than she knew her own body—a fact that was twice as true, since said body was constantly rebelling. She longed for the warm summer months when she’d have little pain.

Her heart whispered “Soon,” and she shuffled through the double doors and into the sunshine.


*I initially thought I wrote like 600 words, but I just checked the word count and was kind of disappointed. But something is better than nothing, right?