They Don’t Know What to Do with Me

photo-on-11-22-16-at-10-29-pm-2TL;DR: My primary doctor’s office doesn’t know what to do with me. Basically none of my doctors do.


Today I went to see my primary for a followup. In October I was told that I now have to come in every time I need a refill for my Tramadol (opioid painkiller that I’ve been taking for my joint pain for about five years). I also got a bit of a lecture on opioid addiction, which I know they have to do but, yeah. This after I had to jump through hoops to get the refill in the first place.

Anyway, I’d scheduled today’s visit when I got my refill in October, but I also wanted to come in to show them my swollen thumbs. Every time I try to take a picture of them, it doesn’t show up on my crappy iPhone 4 camera, but both of them are swollen at the joint. Late last year, my rheumatologist Dr. Memet said I have enthesitis-related arthritis, which means my tendons are inflamed where they connect to my joints. This explains why my inflammation markers in my labs are always negative. After that, she diagnosed me with Reactive Arthritis, but when she left the practice, my new rheumatologist canned my diagnosis—until my anti-dsDNA came back positive. Right now we’re looking at possible Lupus.

I see Dr. S (my rheumatologist) on December 1st, but in the meantime really wanted my flareup and swollen thumbs on record. (My PCP and rheum are both in the same medical group, so they use the same patient portal.) My appointment was with the APRN at my primary doctor’s office. I went in with a two-page list of concerns, plus pictures of where I have joint pain in my chest. (Fun fact: There are joints everywhere. Everywhere.)

To be fair, the APRN was nice and she listened. But… she admitted she doesn’t want to mess with me because “there’s so much going on.”

I showed her my thumbs and we discussed my other trouble joints. I also asked her about Tramadol. A friend with a slipped disc is in pain management and her specialist explained that Tramadol doesn’t work for pain unless you stay on top of it. Meaning, if you take a dose at the end of the day when the pain is already high, like I do, it ain’t gonna touch it. I’ve long suspected this, so it was nice to actually “hear” a doctor confirm it. I asked my APRN if there was any way I could split up my 100mg dose throughout the day. She instead urged me to go to pain management.

I have… doubts about pain management. For one, I’ve heard a lot of horror stories. And… I don’t want anything stronger than Tramadol pushed on me. I’ve tried Percocet and other things and, yeah, they worked really well for the pain, but they knocked me out or made me super loopy. Either way, I couldn’t function. I like functioning. I have writing to do.

Another concern I have is that very few pain management clinics in the state take my (state) insurance. My friend has the same insurance and had a lot of trouble finding a place. She ended up with a clinic an hour away. I can’t swing that because Mike works full-time and we only have the one car. Family members have offered me rides to appointments but honestly I feel bad about asking them to take me that far, especially when pain management wants patients to come in often.

Maybe this sounds like excuses.

Anyway, I expressed all my concerns to my APRN and she said there was one in Southbury. Alas, they don’t take my insurance—but she did find one closer to me than an hour away. Just not as close as Southbury. 😂

Honestly, at this point, I didn’t feel like I had much of a choice. My rheumatologist has suggested pain management before (after grilling me about my Tramadol prescription), and last time I saw the APRN she wasn’t too crazy about me and Tramadol, either. It seems like more and more doctors just don’t want to mess with painkillers. Which is a shame, because when used correctly, they’re extremely beneficial to chronic pain patients. Plus Tramadol is honestly the baby aspirin of the painkiller family. No one is going to pursue it to get high. But I digress.

So, I’m going to pain management. Hold me.

To be fair, my friend had the same fears at first, but she really likes her clinic now. They’ve got her Tramadol dose to a point where it’s helping, and she’ll be having surgery for her neck soon. She’s very happy with the care she’s getting, so hopefully this will be a blessing in disguise.

I also talked to my APRN about my GI symptoms. They’re… pesky. And embarrassing, so I’ve never mentioned them here before. Nor have I discussed them in-depth with my doctors. But I bit the bullet and flat out told her. She said it sounds like IBS, which I’ve been wondering. The kicker is, when I asked what we can do about it, she said she doesn’t want to mess with my body because “there’s so much going on.” And laughed.

I was not amused.

Honestly, I just feel like I’m always being passed on. No one wants to help me. They’re either too busy or don’t have the expertise, so they hand me off. And nothing ever gets taken care of.

This has been going on for almost 10 years.

I had to fight for a cortisone injection in my toe. I eventually got it, but I had to jump through hoops. Cortisone injections are standard procedure for patients with arthritis. My grandmother gets them all the time. I’m pretty sure my dad got a couple in his problem hand (he has tendon issues). But when I walk in, it’s always “You’re too young for all these problems.” Like it’s somehow my fault, or like I’m making it up.

I eventually got the shot, and you know what? It worked like a charm. It wore off, and when I mentioned so to my APRN last time and said I need another one, she said I’m too young and laughed. Like this is all one big cute joke.

Why, today, I couldn’t start Prednisone to fight the inflammation, or at least get cortisone shots in my thumbs, is beyond me. I was flat out told they would only treat my IBS when it’s flaring—even though I said I have symptoms all the time—because they don’t know what to do with me.

They never do.

Review: Give Yourself the “Guts” to Fight (+ Giveaway!)

Schwartz Bioresearch Probiotic
Schwartz Bioresearch Probiotic

Those of you who have been with me for the past 10 years know I’ve been fighting a pesky autoimmune disease that is maybe Lupus. One of my main symptoms is debilitating joint pain, which I combat with a wide toolbox. My greatest ally has been the painkiller Tramadol, which knocks 10/10 pain down to a more bearable 7 or 8. The only downside to taking an opioid like Tramadol is that it can mess with your GI system.

One of my other main concerns about my autoimmune disease is my immune system itself. Since my immune system is confused and attacking my body, it gets even more confused when I come down with something like the common cold. Most people don’t even miss work when they’re sick, but I get knocked on my ass for several days and it almost always leads to a flareup of my autoimmune disease. This means lots of joint pain on top of an already annoying cold, so I try really hard not to get sick in the first place.

I’ve wanted to try a probiotic for a while now, but honestly the ones I’ve seen in stores are expensive. We’re talking like $15 to $20, which is way out of budget when you’re already struggling. I’d basically given up on trying one, until Schwartz Bioresearch contacted me and asked if I’d like to review one of their supplements and host a giveaway. Um, yes please!

Lucky for me, they offer a probiotic. They sent me a free bottle in exchange for my honest review. I don’t get paid for this review, but I do have some goodies for you!

The package itself came fast. Maybe it was expedited since I’m a reviewer, but it arrived three business days after I agreed to participate. I also really liked the packaging itself. The box was super easy to open; I didn’t have to fight with any glue like you do with most things on the market these days. My hands and wrists really appreciated that. However, the plastic around the cap was a pain to get open. It wasn’t perforated like most OTC medicine bottles are, and I don’t have the strength to rip it myself. So I gave up and used scissors. Still, no big deal! The peel-off protective thingy underneath the cap came off super easily.

Speaking of packaging, they were also kind enough to print a coupon for my next order right on the bottle. I thought that was really cool because I’m a busy author and I can easily lose a paper coupon in my various piles of papers, but there’s no way I can lose a whole bottle.

Being a spoonie, I take a lot of pills. Anyone who knows me knows that I hate taking pills. Any time I have to add another one to my pillbox, part of me dies inside. But these capsules go down easy with just a sip of water, and they play nice with my other medication. (Have you ever had a lump of meds get stuck in your throat? It’s not a fun thing.)

From what I understand, it can take a few weeks to get the full effect of probiotics. I take mine twice a day, as recommended on the bottle, and I’ve been taking them for over two weeks now. When I first started them—and sorry if this is TMI—I was not at all regular, thanks to my Tramadol. I try to eat a balanced diet with lots of fiber, but that’s not always enough. I really do think the probiotic supplement has made a difference; I’m still not as regular as I’d like to be, but I no longer have awful stomach pains, and I now “go” much more frequently than before. I consider that a win.

I also think they had something to do with keeping me germ-free while Mike died for weeks with a super cold. The poor guy never gets sick, but this thing knocked him on his ass. He missed like five days of work, which if you know him is unbelievable. And it was a mean cold, complete with stomach bug -esque symptoms and bronchitis. I never got sick, though. Now, I’m sure that washing our hands and not kissing had a lot to do with with that, but I also sleep next to the guy and I have a crap immune system. I once got the flu twice in a row, and I’m autoimmune. He’s finally feeling better, and I never caught it. Another win!

The bottle I received is a month’s supply, so I’ll know even better when the month is over whether it’s made a difference for me. The retail price is $18.90*, so it’s comparable to similar products in stores. Plus there’s that coupon. 😉

Even better, Schwartz Bioresearch offered a $100 Amazon gift card giveaway to my readers! Who can’t use a $100 Amazon gift card? I know I can think of a few things I’d like! All you have to do is enter your email address below (they’ll also send you a free smoothie recipe book).

Giveaway November 2016

So there you have it—my first time using a probiotic. I think I’ve finally got the “guts” to fight like the spoonie warrior I am!

Save 10% off on all Schwartz Bioresearch products! Use code 10SAVE17 on their website, http://schwartzbioresearch.com. My contact has assured me this code will not expire and can be used again and again, so start shopping now!

Have you ever tried a probiotic? What did you think of it? Let me know in the comments!


Disclaimer: This post is sponsored by Schwartz Bioresearch. I received a free bottle of their probiotic supplement in exchange for my honest review. My opinion is my own.


ED, 11/21/2016: My original post linked to the wrong product; the product I received to review was the 40 Billion CFU probiotic, not the 20 Billion. I’ve updated the link and retail price. Also, Schwarzt Bioresearch’s social media manager read my post and very kindly sent me their turmeric and curcumin blend for my joint pain! I’ll be reviewing that product soon.

Under Water But We Still Don’t Understand

via Unsplash
via Unsplash

Every morning when I open my eyes, I hope for exactly two seconds that it’s all been a dream. Then as I wake up, it all sinks in again. How my country elected a man who has ties to known white nationalists. How my country continues to support a man whose rhetoric has been rooted in hate. People around me continue to rationalize his words and actions: “He was just saying those things for attention,” and “It’s not a big deal,” and “There’s nothing to worry about.” Then why is it that myself and other marginalized people are worried? We can’t all be paranoid and suffering delusions.

Existing in this country has never been easy, but until last week I thought I had a good understanding of what black women and other minorities go through. I’m laughing at that past version of myself. I had no fucking clue. Even now, as I’m only beginning to grasp the situation, I still have no idea.

As Rebecca Woolf of Girl’s Gone Child wrote:

This election has caused me to reevaluate my place in this country and it has caused me to redefine who I am as an American as well as a content creator. I know I have work to do and I hope you will join me in normalizing dissent, standing strong, and fighting the good fight for the good of our country and each other.

I feel blown apart. Even civil conversations with people who disagree leave me exhausted. Very rarely do I feel as though I’m being heard. Mostly I feel like I’m shouting “Fire!” in the middle of the room and I’m the only one who can see it. But I will keep having these conversations.

My manifesto was already to write diverse stories, especially focusing on strong female characters, and to lift up other marginalized voices. In the last week, I’ve realized I need to do more. Talking about and writing diverse books isn’t enough. Helping maintain marginalized people’s safe spaces online isn’t enough. Emailing and calling electors and local government officials isn’t enough. It’s easy to do these things in the safety and comfort of my own home, to sit under my electric blanket after my latest dose of pain medicine and get to work. But it’s not enough. I need to get together with people in my community.

Because things are moving too fast, so fast that I can barely keep up: the appointment of Stephen Bannon, a known white nationalist, to Trump’s Cabinet; the violence against minorities and other marginalized people; Trump’s announcement of requiring his employees to sign NDAs; VP-elect’s ironic moves to keep his emails private; the questionable, conflict-of-interest appointment of team members who previously were engaged with Trump in lawsuits… The list goes on and on. It’s all happening at light speed.

I often feel like I’m living in a completely different country than the one I grew up in.

Yet friends and family continue to justify these moves. They say “He’s not really racist.” No? So please explain why he continues to affiliate with known white supremacists. “Well, what are these people threatening to do?” Nothing, yet, but their appointment speaks volumes. It sets the tone for a very different country. It paves the way for more hate, for the growing white nationalist movement to continue. (By the way, did you know that the white nationalism movement has been growing faster among young white males than ISIS is growing overseas? Chew on that.) And putting racists in positions of power is dangerous; it allows them to make decisions for our country and change the progress we’ve made.

I really don’t know how people can be so oblivious about these things.

I decided to organize my own protest in my hometown; the demographic there is over 50% people of color. But my own husband won’t protest with me, because he “doesn’t do protests.” Even after a long conversation where he asked questions and I explained who Stephen Bannon, David Duke, and others are. Then he continued to try to placate me, insisting that there’s nothing to worry about. So far it looks like I’ll be standing alone. Or sitting, since I’m bringing my camping chair and cane.

I’m frustrated and dismayed.

Best case scenario, it’s like some have speculated, that Trump didn’t really mean any of the things he’s said and done. He’s just insecure and needed someone’s support, and the only people willing to give it to him were the KKK and other white nationalists. So he’s just been saying whatever to keep them happy.

Still, that’s just as outrageous. In my America, the KKK and other white supremacists are supposed to keep their bigoted beliefs to themselves. There’s no law stopping them from convening, but there are checks and balances keeping them in place.

There’s some speculation that Priebus was appointed just to keep Republicans appeased, that since he and Bannon are equal partners, it’s really Bannon running the show, but Priebus is there to also placate people’s concerns about Bannon.

All I know is, this is serious, we need to treat it as exactly what it appears to be, and change the things we cannot accept.

Worst case scenario, Trump has meant every single thing he’s said, and we’re facing a major shift in our country and thus globally. I’m not trying to be a doom and gloom apocalypse crier, but the direction we’re pointing in is horrifying. We’re talking more white nationalists in positions of power over our country, in a time when our presidency is at its most potency in our history. In no way is that a good thing or anything that should be acceptable, even if you’re white. Every single American who claims not to be racist should be outraged right now, or at least heavily questioning the chain of events in the past week (as well as Trump’s entire campaign).

To my readers: I’ve never been much into politics. I’ve purposely refrained from talking about my country’s government issues because politics tend to alienate people. In years past, elections have been the same old, same old: Democrats and Republicans smearing each other, each with arguably good points, but business as usual. Nothing that would hurt Americans on a mass level, because usually there’s too much arguing for anything to really get done. There’s eventual compromise, with both parties sated and things that most Americans can (arguably) live with. Change has always been for the better, in a progressive manner. I’ve never paid a whole lot of attention or commentated on politics, because I’m not affiliated with either party and I’d rather write about badass belles kicking ass. But I can’t say that writing diverse books and including marginalized people in the lit community is my brand if I won’t loudly fight for their rights. Our rights. And this entire election has been completely the opposite of normal. I keep seeing the word “unprecedented” thrown around, and while it’s getting tiring, it’s apt. Just not quite strong enough.

So I’m going to be talking a lot about my country and current events in the coming months and years, until things improve. Until disabled people aren’t worried about healthcare and benefits. Until my queer and POC friends feel safe. Until my Muslim and Jewish friends tell me they aren’t scared. I’m going to loudly and publicly denounce the open hate that has infiltrated my country. Of course it was already there in the shadows. But now it’s become normalized to share negative views of women and trans people and people of color, to openly hate anyone who fits into the non- straight white cis able-bodied male category. And if you disagree, you’re a crybaby social justice warrior at best and at worst the target of physical harm.

In the same vein as what Rebecca Woolf said in her latest blog post, I’m going to step up my game of supporting marginalized creators. I’m going to do giveaways and interviews in support of them—especially women. I’m going to continue intercepting when I see others being bulled online and in the physical world. I’m going to keep talking to electors and local government officials and putting pressure on them to Make America Safe Again and #StopBannon. And I’m going to continue writing books that shine more light into the world, normalizing diversity in fiction.

None of this is going to be easy. It’s already been really fucking hard. I have to take frequent breaks. I honestly don’t know how POC deal, because this country feels alien to me and so many of them are telling me, “It was always this way for us.”

Even as the water continues to rise and we gasp for air, we still barely grasp the situation. With my last breath, I’ll keep talking, keep trying to get people to understand and fight with me. I hope that you, my lovely readers, will fight with me too.

If you can’t, I hope you can still find safety and solitude in my fiction. Supporting my writing and even donating to me helps me—a lower class, queer, disabled woman—continue to survive and therefore continue to write and stand up for others. I’m already struggling financially because of my health. Now more than ever I need your support in whatever form you can give: kind words, sharing my books with other readers, purchases, and donations.

The revolution has begun and, as much as I never saw myself doing anything like this, I don’t feel as though there’s any other choice.

Elizabeth Barone

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!

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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!

Win a $100 Amazon Gift Card!

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via Unsplash

It’s November, which means two things: the election is coming up (eep), and the holidays are, too. While I can’t help you decide who to vote for, I can totally help you with your holiday shopping.

Schwartz Bioresearch recently reached out to me and offered to send me one of their products and open up their $100 Amazon gift card giveaway to my readers! I’ll be reviewing their probiotic in a couple weeks, but in the meantime, all you have to do to enter the giveaway is click here.

You can also enter below.

Giveaway November 2016

Who doesn’t love a free gift card? I mean, really.

The $100 Amazon gift card giveaway ends November 30th, so enter now!


Disclaimer: This post is sponsored by Schwartz Bioresearch. I received a free bottle of their probiotic supplement in exchange for my honest review. My opinion is my own.

It’s Never Lupus… Until It’s Maybe Lupus… Again

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via Unsplash

Being sick is my full-time job, except I don’t get paid, days off, or vacation.

It’s been nine years since everything changed. I went from mostly healthy to being unable to get out of bed during the worst of flares. It all started with a numb arm, then joint pain and fatigue. I got passed from doctor to doctor—none of whom could figure it out. At best, they’d scratch their heads. At worst, they suggested my problem was psychiatric.

This whole thing has been enough to drive me insane, and today nearly pushed me over the edge.

Last fall, I was diagnosed with Reactive Arthritis by my rheumatologist, Dr. M. She said it could still be Rheumatoid Arthritis, but since I’m seronegative and my arthritis seemed to be enthesitis-related, she decided to treat it as ReA. She started me on Sulfasalazine and for the first time in nearly a decade, I started to feel hopeful.

That’s all been ripped away.

Over the summer, I found out Dr. M was leaving the practice. I saw my new rheumatologist, Dr. S, in September, and the appointment did not go well. I still really want to stress that he was very nice. He just didn’t listen. I called the office to complain and after a bit of pushing, was able to switch to another rheumatologist—as long as Dr. S okayed it. In the meantime, I was supposed to get my blood work done.

I finally did last Thursday. It took me a while, because as usual, my life was blowing up. I was dealing with pain and fatigue, financial stress, and my Biz Noni passed away. But I went, even though I didn’t have any expectations. “Everything came back normal” is a string of four words that I’ve come to loathe. However, Dr. S called me back personally yesterday evening. I missed the call, so he left a voicemail asking me to call back as soon as possible.

I knew right away that something had shown up.

I got the voicemail after office hours, so I called first thing this morning. And Dr. S told me that one of the antibodies for Lupus came back positive.

I’ve done this dance before. Anyone who’s been with me since my blog was called Perpetual Smile knows that my previous primary care physician was convinced I have Lupus. But because my blood work is always borderline, that diagnosis was dropped after seeing a rheumatologist. I was with Dr. G for years until he retired, and he always told me that my blood work is at the bell curve—that something is brewing. But “something” isn’t helpful, and if it’s only brewing, I sure as fuck don’t want to know what full blown feels like. Dr. G didn’t want to diagnose me with or treat me for anything until we had something definitive—which could take years. In the meantime, I was miserable.

This whole thing has been maddening.

So here I am again: maybe Lupus. No diagnosis. I can’t work a normal job because my illness makes me flaky, but I don’t qualify for disability because I don’t have a diagnosis. (And even then, when I did have one, I got denied.) Because Dr. S didn’t think I could possibly have arthritis, I was taken off Sulfasalazine. All I have is Tramadol, and it isn’t enough. It tones the pain down to a 8 or 7 out of 10, but often it barely makes a difference. And I can’t function on stronger painkillers.

I’m back to square one. The entire past nine years of labs and doctor’s appointments are meaningless. And while part of me is kind of all “See, I told you so”—since Dr. S kind of dismissed me—the rest of me is seesawing between shock and… I guess denial would be the best word.

I don’t want this.

Do

not

want.

But I do have to admit, ReA never really fit. SSZ helped at first but then I felt worse. And ReA is not triggered by mono, whereas Lupus is. Lupus explains the weird labs, the painless sores in my mouth, the joint pain, the fatigue…

Honestly, though, I don’t know if I can go through all of this again, only to be told “Nope, sorry—we still don’t know what’s wrong.” I don’t know if I can do another eight years of this. I’ll do it anyway, of course, because I need to feel better and I want to know what’s been completely ruining my quality of life.

But fuck me. Again? Really?!

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?

The Complaint

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via Unsplash

Late Monday morning I finally gathered up the nerve to call my rheumatologist’s office. I was super anxious about it because, in the past, I’d asked to see another rheumatologist in the practice and been denied. Apparently they have a policy that patients can’t switch doctors.

I’ve never heard of any policy like this, but no matter how hard I pushed at the time, the office staff refused to let me see the other rheumatologist—even though Dr. M had suggested I see a psychiatrist and sent me on my way. Even though my weekend was very calm and relaxing, by Sunday night I was a ball of nerves again. What if they wouldn’t let me switch? What would I do then?

It wasn’t until I got to my best friend’s house that I was able to call. Sometimes, you just need a buddy. We sat in her office and, while she worked on something for a client, I got on the phone.

“Hi,” I said when one of the receptionists picked up. “I need to speak to someone who I can leave a complaint with…”

I explained everything that happened last Thursday. Calmly. Even though my hands were shaking. The woman I spoke with was very nice. She listened. She didn’t interrupt me. When I finished, though, she explained that it’s against their office policy to let patients switch doctors.

It felt like the floor had suddenly dropped open underneath me and I’d plummeted through. Still, I took a sip of ice water and a deep breath. I was in control, and I wasn’t taking no for an answer.

I reiterated my concerns, that it just was not okay for Dr. S to come in and change everything when I’d been doing so well. Even if sulfasalazine was giving me nasty side effects, it had been helping—which was what Dr. M was hoping. Seeing the results told us that she’d been right, that I have enthesitis related arthritis. We just had to try another DMARD.

I explained that I had really wanted this addressed before it gets much colder, since that’s when I really have trouble with my arthritis. (And I’m already having a really hard time with the cooler temps, but I guess that’s another blog post.) She repeated their policy and explained that, since it’s not really a complaint and “more a difference of opinion,” they wouldn’t ordinarily have me switch. Plus, Dr. C is not currently taking new patients.

Again, I felt the ground giving way beneath me.

But, she said, it just so happens that a new rheumatologist is joining the practice at the end of the month—and she takes my insurance. (Which is state insurance, and boy, do patients on state insurance get treated differently. But that’s also a post for later.) The receptionist told me that she can talk with Dr. S and she’s sure that he will okay the switch. In the meantime, she asked, “You are going to do your blood work, right?”

“Yes,” I said. “Of course.”

She asked if I wanted her to wait to talk to Dr. S, and I said no—I’d rather her speak to him right away. So she was going to send him a message and then the office would call me once they got the new doctor’s schedule. I thanked her and, mostly satisfied, hung up with her.

When I got off the phone, Sandy—who’d been sitting there the whole time—told me that she was really proud of me. “You handled that conversation really well.”

Unfortunately, it just comes with the territory. For the last near decade, I’ve had to learn to advocate for myself. Doctors and their offices are busy, at best. At worst, they don’t want to listen for whatever reason. I’ve been steamrolled by so-called professionals many times—people telling me there’s nothing wrong with me or it’s “just” this or that. It’s hard not to feel beaten down. Throughout my early life, I got spoiled with a pediatrician who usually knew the answers and always listened to my parents and me. I could trust that he would help me feel better, or at least take the time to try.

I could get into all of the things wrong with the medical system—especially when it comes to being a chronic illness patient and a woman—but I honestly don’t have the spoons right now. I’ve spent the last nine years feeling invisible in so many ways. I don’t want to be erased. This is my quality of life, and no one else is going to fight for it.

I’m the only one who can.

I have a young family member who is in the DCF system and placed with another family member. He is special needs and, through DCF, has an APRN social worker who oversees all of his medical and occupational needs. She keeps track of everything and assists his foster parent with setting up appointments and getting different issues resolved. The other day I was thinking about all of this, and how helpful it would be if all people with chronic illnesses were able to have an APRN like that.

I know my body really well, but I don’t have all the knowledge that an APRN does. And since they understand the medical system as well as various illnesses, they can help you accomplish quite a bit.

I don’t know what it would take to get something like this rolling in the U.S. Hell, maybe it already exists. But it sure would be amazing.

Anyway, I’m moving forward. I’m nervous because, for the next month, I don’t exactly have a rheumatologist. I can’t call the office with complaints about my knees, hips, and elbows and expect any results (since Dr. S insisted that I can’t possibly have arthritis, that I don’t need “those medications,” and that I “should be grateful”). It makes me both angry and uneasy. It’s not fair.

But for me and so many others, this is the way it is. Not only do we fight our bodies, but we also fight for our rights as patients. And I get that rheumatologists have polarized opinions on seronegative arthritis. There are countless medical journal articles and research about both opinions. Dr. M was strictly of the “arthritis has to show up in blood work” camp—until I refused to stop coming to appointments and kept reiterating my symptoms and issues. She finally decided to treat me based on my symptoms rather than blood work.

It took me almost ten years to find someone who would.

I can’t afford to spend anymore time working with another doctor who doesn’t believe in seronegative arthritis. Dr. S was very nice and is very much entitled to his opinion. But this is my life, and I refuse to continue being miserable in order to hold his or anyone else’s hand through ten more years of jumping through hoops.