Putting My (Inflamed) Foot Down

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It’s been a busy last few weeks while I’ve been trying to get things rolling again. On top of editing, writing, and marketing, I’ve also been having trouble with my arthritis.

My joint pain is migratory, which means that it can affect any and every joint, often at different times. Sometimes it decides it’s comfy and moves into a particular joint for the long haul. For the last couple of years, I’ve had a lot of trouble with my right hip. Nothing was ever really done about it, despite the many specialists I saw for it—including my rheumatologist. I basically went ’round and ’round the medical merry-go-round—which is nothing new.

Throughout the last decade, this has been my experience over and over again.

So when I started having trouble with my big toe on my right foot, of course I totally, naively thought things would be different this time. After all, my rheumatologist diagnosed me with reactive arthritis last year and started me on treatment. I’ve been taking 1,500mg of Sulfasalazine every day for several months, but it really hasn’t made much of a difference. Lately, my joint pain has changed from a deep ache to an almost bruised feeling on top of the ache.

When I went to my rheumatologist for a followup, I let her know about all of this. Since she’s leaving the practice this summer and her spot is being filled by another rheumatologist, I figured we’d probably come up with a transition plan. I asked her about trying something else, and she said she wanted to continue the SSZ. Since there were periods of time when I’d stopped taking it for one reason or another—insurance lapse, hospitalization, total brain fog—I was willing to give it another shot.

She didn’t seem too concerned about my toe, though, and sent me on my way. No transition plan. No mention of trying another DMARD.

Doctors are overbooked. I know this. It’s usually prudent to stick to just one issue during office visits, otherwise things get lost in the midst. So I called the office and spoke with her medical assistant, reminding her about my toe.

I can barely bend it, and definitely can’t put weight on it. It feels just like my hip did for all that time. The thing is, my hip didn’t just magically stop hurting. It’s still there. The pain in my toe makes my hip look like a walk in the park—which I’d never imagined could feel any worse.

This is how it goes. I get used to one particular pain level, only to have my body say “Challenge accepted,” and throw something else at me.

My rheumatologist’s solution was Aspercreme with lidocaine.

Instead of facepalming and arguing, I replied that I’d give it a shot. Her assistant told me to call back if it didn’t work.

Here’s the thing: I have an entire box full of things I’ve tried that didn’t work, or worked a little but then stopped. I’ve got lidocaine patches somewhere in my house that I tried on my hip. I have half empty tubes of Voltaren. Tiger Balm does help quite a bit, but if I reapply too often, it loses its effect.

My rheumatologist is very by the book, with a light touch as far as treatment goes. I really appreciate the fact that she doesn’t send me off loaded up with prescriptions. I once had a primary who did just that, and it almost killed me because their office didn’t pay attention to interactions and I blindly trusted them. But it’s starting to get really frustrating that, with every new achy joint, I have to start from square one with her.

It never goes this way:

“Ah, yes, another trouble joint. Well, we’ve tried X, Y, and Z in the past, so let’s not even bother with that. Let’s move up to Plan B and not waste any time.”

I understand why she does it. But I almost wish she was a bad-ass like the attending in the ER who smashed the inflammation in my body with a super dose of Prednisone and a shot of dilaudid to tide me over while the steroids got going.

Instead, I had to play the game. Every chronic pain patient is familiar with this game. I already knew Aspercreme, Icy Hot, etc don’t do much of anything for me. But I still had to do things her way. I called back and let the office know that it didn’t work, and my rheumatologist personally spoke with me and told me that she wanted to try a week of Mobic (an NSAID). If the Mobic didn’t do it, she told me, she’d have me come in for a cortisone shot.

Thankfully, this was a prescription so my insurance covered it. Still, I’d already tried Mobic in the past, several times. It doesn’t work. But again, I did things her way because she’d told me she’d give me the cortisone shot; I knew ahead lay some kind of relief, even if I had to spend another week alternating between icing my toe and wanting to just rip the damn thing off my foot.

I did the Mobic for the week and, as expected, it didn’t help.

When I called the office, I was told that they would speak with my rheumatologist and find out when she wanted me to come in. Because I was still in editing land and doing a whole bunch of other marketing/administrative things (and I don’t get a signal for my phone inside my house, sigh), I missed the callback. I didn’t get to listen to the voicemail until Saturday morning. It was not good news.

In the voicemail, my rheumatologist’s assistant told me that she wants me to see a podiatrist and that I have to set up the referral myself. There was no mention of my cortisone shot.

I cried for a good solid thirty minutes, and then on and off throughout the rest of the day.

I know that steroids are controversial in the chronic illness community (for both patients and doctors), so I really don’t want to hear “That’s what you get.” My issue is, I was told I would get one. I was promised relief. Instead, I was passed off to yet another specialist. This has been the pattern for the last nine years.

I’m tired of this. I’m tired of feeling like my doctors either don’t believe me or don’t know what to do with me. I get that my rheumatologist is leaving the practice and probably just doesn’t have the time to squeeze me into her schedule before she goes. I get that. I really do. I’m crazy busy, too. But what I don’t get is why I had to go through all of this—the office visit, the phone calls, the Aspercreme, the Mobic—when I was only going to be handed off anyway.

I’m sorry, but I won’t be seeing a podiatrist.

I have autoimmune arthritis. Next month it’ll be my elbow or my hip again. I shouldn’t have to see a different specialist for each body part, going through the entire thing all over again: the consult, the battery of tests, the waiting, and then maybe some treatment. Emotionally, I can’t continue coping with the strain of this pattern. It’s exhausting. Physically, I can’t wait an entire summer before I get this taken care of.

Summer is supposed to be for getting outdoors, doing what little physical activity I can. It’s not supposed to be like winter, where I sit on my couch with my pain meds and heating pad, missing out on family functions.

I’ve been doing this for almost ten years; I’ve been doing everything their way. Only when I push back—insist on treatment—do I ever get anywhere.

So, this afternoon, I called my rheumatologist’s office again. I got the front desk’s answering machine (it’s Monday, so they must be crazy busy after the weekend), and left a message asking for clarification and repeating that I’d been told that I would be able to come in to the office for a cortisone shot.

And I’ll call again tomorrow.

And the next day.

Every day, if I have to.

I’m putting my foot down (but with all of my weight on my ankle, off my toe, of course).

I think I’ve patiently played the game long enough.

The Lump On My Chest

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I knew that stress aggravates my arthritis. In the last nine years, some of my worst flareups occurred during stressful times in my life. Because I also suffer from PTSD, it’s extremely beneficial for me to incorporate relaxation into my daily life. If I don’t, I easily become a messy blob of pain, anxiety, and depression—all of which, of course, feed into each other. So when the news dropped that my publisher is closing its doors, I knew right away that it was time to ramp up my R&R.

After months of skipping my nightly meditation routine and daily yoga, I forced myself to get back into it. I use aromatherapy almost daily—okay, yes, this is actually how I justify my Yankee Candle addiction, shut up—and nightly (with lavender essential oil on my wrists and pulse points on my neck), but ramped that up too. Still, I almost immediately felt the effects of stress on my body.

I have chronic pain. I’ve had Reactive Arthritis (AKA Reiter’s Syndrome) since 2007 (and my rheumatologist tells me it could still be Rheumatoid Arthritis). Mine is enthesitis-related, meaning the inflammation is where my tendons insert into my joints. It’s brutally painful, and I’ve been in a flareup for over a year now (with a brief respite in September/October because of Sulfazine). With the weather all over the place and allergy season under way, my pain was already high. (Hay fever causes inflammation in the body. Just one more reason for me to religiously take my allergy medicine.) But last week something completely new happened to me.

I’d heard of costochondritis from other spoonies, but hadn’t experienced it myself. I do get swelling in my ribs. It’s really only uncomfortable if I wear a “real” bra, which is why I’ve basically been living in Gilligan O’Malley camis for the last couple years. (Praise my lord and savior Target.) I’ve had a rough time with my ReA, so was very thankful that I hadn’t had to deal with anything like costochondritis, because from what I’d heard, it’s pretty nasty. And now I can confirm this from firsthand experience.

Since the news dropped, I’ve had heartburn and nausea on and off. (Thanks anxiety.) Usually drinking 2-3 glasses of ginger ale eases it. At this point I should buy stock in Canada Dry. But last week, as I toweled off after a shower, I noticed that there was a big lump on the right side of my sternum, right under my right collarbone. And it hurt, even if I didn’t touch it.

So of course I ignored it. Or tried to, anyway. As the night wore on, it became more and more painful. It felt like someone was sitting on my chest. Taking Tramadol and massaging it eased it a bit, but even after my heartburn abated, it was still there. I tweeted about it like a good #spoonie, but it was midnight and I didn’t really expect anyone to be on. Because I enjoy torturing myself, I started Googling my symptoms.

After examining a diagram of joints in the sternum, I determined that the swelling was dead on the manubrium—the joint where the first rib and sternum connect. It was definitely costochondtritis.

Unfortunately, there isn’t much you can do for costochondtritis. You basically have to ride it out. You can take anti-inflammatory medication, like an NSAID, but since they don’t usually much help my arthritis, I figured it probably wasn’t worth aggravating my heartburn any further. I did consider going to the ER and begging for a super shot of Prednisone. One of the last times I had a really nasty flareup, the attending in the ER did that for me and it brought the pain down immensely. I was exhausted, though, and didn’t really want to sit in the ER for potentially hours. I decided that if I didn’t feel any better in the morning, I’d go.

Thankfully, the swelling went down and the next day, it was as if nothing had happened. That spot is still tender to the touch, but nowhere near as painful as my hands, wrists, big toe, and hip have been lately. It’s now hardly even a blip on my radar.

In the days since, I’ve taken care to make sure I’m getting enough rest. My sleep schedule is way out of whack lately, as I’ve been staying up late working and combating pain. I’m easing my bedtime back an hour every night. I’ve now graduated to going to bed at 1am rather than 5:30am. I’m also continuing my nighttime yoga routine (mountain pose, standing forward bend, triangle pose, and wide angle standing forward bend). Stress is fun times.

Odds and Ends

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It’s been a while! I so didn’t mean to slack off on this blog. I’ve been editing Diving Into Him and writing Just One More Minute, and everything else kind of took a back seat. Even my house. In the process, I learned once again why I absolutely can’t edit one book and write another at the same time. I’ve tried so many times, but I guess my brain just doesn’t function that way. You’d think it would be easy peasy, but apparently editing and writing use opposite sides of the brain. I was able to keep it up for a few days, but going back and forth was mentally exhausting. Plus, to be totally honest, I was having a hard time focusing on each book.

So I (begrudgingly) pushed Just One More Minute aside and put all of my effort into Diving Into Him. Because it’s a re-release, there weren’t too many major changes. It was mostly tidying up and nabbing any lingering continuity issues. For example, Jett spends a night in the studio on an air mattress, but later on when she needs to sleep there again, there’s not even a blanket. I made sure to mention that she’d brought it all back to the condo. These are seemingly small things but it does jar the reader. Shout out to my editor Christina Lepre, whose attention to detail is impeccable! She also happens to live in Boston, where the South of Forever series is set. While writing Diving Into Him, I really struggled with Boston’s super complex T system. Christina was able to clarify some things for me. I feel like the book is so much more realistic now. Any remaining errors are completely my own. (Note to self: mention that in the acknowledgements.)

Speaking of Diving Into Him and the South of Forever series, I spilled the beans to my reader group the other day, and now I’m going to tell you! I know a lot of you have been patiently waiting for the South of Forever series to continue. I self-published Diving Into Him last summer and had plans to release the second book, Savannah’s Song, in the fall. But between some health issues and time conflicts, I had to push the release back. And then back again.

In the meantime, I’d also signed with Booktrope. Through them, I’d re-released my debut novel Sade on the Wall (a YA suspense) as a sort of test balloon. I honestly wasn’t sure whether I would like working with a publisher, compared to self-publishing. The two paths are very different, and which is best for you completely depends on you the author, and your goals. It turned out that, even though there was a major learning curve for me, I actually really liked the process. Booktrope is different from other publishers in that they have a very team oriented approach. You handpick your production team, consisting of a project and book manager, editor, cover designer, and proofreader. I got very attached to these humans, you guys. As an indie author, I’d worked with different freelancers, but never so closely. It feels like being part of a family.

There are, of course, some cons. But what sealed the deal for me was being able to focus more on writing, while trusting my team to take care of the other details. I used to work almost around the clock while wearing all the different hats. With Booktrope, I could let go and put the majority of my time into writing new books.

So I decided that I wanted to submit new work to Booktrope, as well as some other previously published work.

At the time when Savannah’s Song was scheduled for release, I didn’t go into major details about the delay because I still wasn’t sure what I wanted to do. And on top of that I was dealing with a lot of health issues. I lost a lot of September and October to side effects from medication, then spent November and December recovering. In the process, I learned that I’ve been dealing with PTSD for the last fifteen years, and so began an intensive therapy program to overcome it. And, as if all of this wasn’t enough, the medication I was taking for my arthritis stopped working so well. I started experiencing breakthrough pain. Then my health insurance lapsed, I ran out of medication, and my joint pain flared up to the point where I almost couldn’t get out of bed.

Thankfully, I was able to get back on track in January. Last month was all about a fresh start. I’m doing really well, both physically and emotionally, and because of that felt ready to get back into a production schedule.

I truly hated that Savannah’s Song was delayed so much. In the past, I’ve had to push back release dates maybe a week or two, but never months and months. I hate when series are delayed. It’s torture, waiting to find out what happens next—even if there isn’t a cliffhanger. So I had a conference call with my project/book manager at Booktrope, and South of Forever is officially in our production schedule for 2016.

We will be releasing the first two books in the series, Diving Into Him and Savannah’s Song, on the same day this spring. My goal is to release all four books in the series this year. (The third book is already written, and I’ve started the final book.)

My cover designer has created the covers of the first two books, and they are gorgeous. I can’t wait to share them with you!

However, I can share with you some other exciting news. My standalone contemporary New Adult romance, The Nanny with the Skull Tattoos, was scheduled for a February 19th re-release. Because my production team was so ahead of schedule, though, we were able to secretly release it early!

The Nanny with the Skull Tattoos, by Elizabeth BaroneBLURB

Single dad Max isn’t looking for love—he only needs someone to help take care of his two-year-old daughter, Chloe. Or so he thinks. After being kicked out of his parents’ house, he’s determined to make it on his own. But juggling a full-time job, an undergrad program, and childcare is pretty much impossible. When his best friend jokingly suggests he post an ad for a live-in nanny on Craigslist, he goes for it. After all, he has nothing to lose… right?

When artist Savannah quickly responds to his ad, Max is thrilled. Her resume is perfect and Chloe seems to like her, despite the slightly menacing tattoos decorating her arm. Savannah brings a light and warmth into his life that he never thought possible. Max hasn’t so much as dated since Chloe was born, but he’s willing to give it a shot with Savannah. There’s just one problem.

Everything is perfect just the way it is. Even his daughter is happy. If he messed up things up with Savannah, how could he ever forgive himself?

Buy Now: Kindle · iBooks · Nook

Read a Sample on Wattpad

If you’d prefer a signed paperback, I’ll be taking orders for those soon.

So that’s all for now. I have some other potential news, but won’t announce anything until things are concrete.

Have a great weekend!

XOXO

Breaking Through the Pain

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These last few weeks have been miserable. We kicked off the new year without insurance and, of course, I ran out of Sulfazine at the same time. I’d already been having breakthrough pain. Throw in the brutally glacial temperatures that rolled in with January, and the week and a half or so without my medication was hell. Thankfully, I had some Tramadol left, so made due until I was able to get our insurance turned back on.

(Never, ever take health insurance for granted. Ever. Lesson learned.)

I’ve refilled my prescriptions and resumed my regular dosage, but it’ll be some time before it builds up enough in my system again to quell the fire in my body.

Inflammation is the worst.

I’ve got more Tramadol and Tiger Balm to carry me through, but after four months with hardly any pain, I’m having a hard time readjusting. On the first really bad day, there were a lot of tears. The other night, I was so exhausted I collapsed on my couch around 8pm and passed out under my electric blanket.

(Turns out Invader Zim is so much weirder than I’d remembered, but the comfort of the show I loved in my teens was enough to lull me to sleep.)

So I’m writing again, but very slowly. Last year, when I was in remission, I worked my way up to writing at least 3,000 words in an hour. Now I’m lucky if I can churn out 1,000. Even if my wrists and fingers didn’t hurt so much, the rest of the pain throughout my body is enough to blur my focus.

It’s frustrating, to say the least.

But I have learned to appreciate the power of scissors. Almost all packaging defeats me—even Emergen-C packets with their perforated edges. I’m finding that there are few problems a good sharp pair of kitchen scissors can’t solve.

(Emergen-C, by the way, is a wonderful invention. One of the symptoms of my disease is bone deep fatigue—and it’s also a side effect of Sulfazine, sigh. Emergen-C gives me the boost I need that caffeine can’t quite achieve anymore.)

I’ve been taking every day very slowly, but I have to say I’m relieved the weekend is here.

This Is What I Was Afraid Of

It’s been a long weekend. On one hand, it was kind of nice to laze around completely. (I even let the dishes go for one night.) But as of the new year, our health insurance ended. I missed the deadline. I thought I had more time, and then all of a sudden it was January 1st. (There’s still time to enroll and escape the penalty. The deadline I missed was for continual coverage.) I completely acknowledge that this was my fault. On the 1st, I tried to enroll but the Access Health CT website wasn’t working. (Literally. No matter what I clicked on and which browser I used, it just kept bringing me back to the home page.)

Naturally, I ran out of Sulfazine (the DMARD I take for my arthritis). I have refills available but can’t call them in without insurance. (Honestly, I have no idea how much it costs out of pocket. I’m kind of scared to find out.) Basically, this medication silences the inflammation that causes my joint pain. It’s only been a few days since my last dose, but already I’m in agony. And while I appreciate that, had I been on top of my game, I wouldn’t be in pain, it points to a bigger problem.

I wasn’t supposed to be on Sulfazine much longer, anyway. My rheumatologist said she wanted to take me off it the next time she saw me. She’d hoped that we were dealing with Reactive Arthritis and that the medication would get rid of it. It’s telling that I’m right back in a flareup.

Last night, during a Target run, I stood in the aisle for a long time debating whether to get some Tiger Balm. I haven’t had to use it in months, but something told me to pick some up. I’m glad I did, because tonight I’m miserable even with it slathered on my knees, hip, and lower back.

I do have some Tramadol left (and took one now), so hopefully I’ve got enough in my old bag of tricks to tide me over until I can get our insurance back on. (Rest, hot and/or cold packs, Tiger Balm, Tramadol.) I’d really hoped that Sulfazine would do the trick, but part of me knew otherwise; I had some breakthrough pain late last month and was starting to question the effectiveness of Sulfa. I guess now I know.

I’m sure my rheumatologist will have an action plan. I’ve really come to respect and trust her. Maybe I need Sulfa combined with another DMARD. Or maybe she’ll want to stop Sulfa and try something else. For now, my mission is to take it easy—and get my health insurance back.