Advocating for Your Chronic Pain Illness

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Last Thursday, I was not in a good place. I felt utterly mortified, wavering between defeat and anger. I knew that I needed to find another primary care provider, but the way my APRN said “If you see another doctor or get another prescription, I’ll get another letter and I won’t prescribe the Tramadol anymore” made me feel like if I transferred to another practice, I’d still just end up looking bad. I hadn’t actually done anything wrong, but I felt like I had, and I felt like I didn’t have any other choice.

Her words kept replaying in my head: “I’ll get another letter,” as if she was trying to threaten me. Had she really been concerned about my being dependent on painkillers, she would have asked me questions about my use, trying to get to the bottom of her concerns and helping her patient. But healthcare practitioners are not trained in substance abuse, save for a small segment. Nor are they trained in pain management. So, when faced with chronic pain patients like me or patients who are struggling with substance abuse, they don’t know what to do with us. And when they’re prejudiced by ageism, sexism, and ableism like my APRN—who made up her mind about me the very moment she saw my youthful, feminine face—they can’t be bothered at all.

And hey, maybe she really does mean well, but I have a hard time believing it when she consistently dismisses all of my concerns during our appointments, yet is attentive, involved, and jumps into action whenever she sees my husband. I’ve sat in on his appointments. I’ve seen the differences in treatment with my own eyes. The other day, while checking out, the elderly woman behind me praised the same APRN who’d just all but flat out accused me of lying. At this point, I can only conclude that she treats me the way she does because of how I look: like an able-bodied teen girl.

So yes, I call it like I see it: ageism, sexism, and ableism. And I’m so sick of it, I could breathe fire.

When my rheumatologist told me, during our first appointment, that I can’t possibly have an autoimmune disease and that I should be grateful it’s “only” Fibromyalgia, I was hurt and furious. I walked out of the office barely holding back tears, and spent the morning intermittently crying and smoking cigarettes. Then, the next morning with my best friend by my side, I called the office to complain. I ended up having a very productive phone conversation with him, and truly felt that he wasn’t bullshitting me. He’d realized he’d been wrong to judge me so quickly, and was willing to help me get my autoimmune disease figured out and under control.

I didn’t feel as if I could have such a productive conversation with my APRN. She has been dismissive of me since my first appointment with her, and even when I repeat my questions or point out facts, she completely ignores me. Whereas, with my rheumatologist, even when he disagreed that I have an autoimmune disease, he was still willing to listen, to take the time to answer my questions. I’ve never gotten that impression from my APRN.

Besides, I needed to state facts and lay things out, which would take longer than a five-minute conversation with the front end staff. They’re very busy, and likely wouldn’t have time to sit on the phone with me while I rattle off dates and details, nor could I be sure that the message would be relayed properly. I also felt super anxious, and wasn’t sure that I could speak without getting upset all over again.

I felt stuck. Even if I transferred to another doctor in the same health network, I would just look like the drug shopping liar she accused me of being. I wasn’t sure that the next doctor would be willing to refill my prescription and, even though at this point the Plaquenil is starting to work, I do still need pain relief. For my own peace of mind, I also need to know that, should the pain get bad again, I can get the medicine I need in order to get through my days and nights.

“I’ll get another letter,” she’d told me. While venting to Sandy, it dawned on me: she would get another letter, because I was going to send one to her.

Even though I wrote it in the security of my own home, I felt my anxiety mounting with each word. As patients, we’re conditioned to go with whatever the doctor tells us because they have the medical degree, not us. As chronic pain patients, we’re even more inclined to roll with it because we’re grateful to be treated at all—especially women, who are often stigmatized as being dramatic or drug-seeking. Autoimmune diseases are documented as being difficult to diagnose and treat; what works for one patient often won’t work for another with the exact same condition, because every person’s immune system is different. When you’re fighting an autoimmune disease, you’re fighting your own body, a complex and adaptive machine that scientists and doctors still don’t completely understand. So, when you’re not even very familiar with your own disease, it’s absolutely daunting to stand up to a healthcare practitioner and say “You’re wrong”—even when they are very clearly wrong, as my APRN was.

In my three-page letter, I stated dates that I’d been seen along with the unprofessional things that she’s said to me. I explained that I had come to her first, that because she’d brushed me off, I’d had no choice but to go to the ER when it hadn’t improved a week later. I ended my letter invoking my right as a patient to see the office MD from here on out.

After I put my letter in the mailbox, my anxiety only increased and I kept questioning myself, telling myself that I’d made a mistake, that I should just rip it up and deal with things the way they were. I always feel bad for standing up for myself. Maybe, if I’d just outright said to her “It’s not okay for you to joke about my age and condition” from the very beginning, or “I would like to try Flexeril” when she brushed off my Advil questions, it wouldn’t have come to me laying it all out in a three-page letter.

Women are conditioned to believe that if we speak up for ourselves, we’re inconveniencing someone. We’re accused of complaining, of being a bitch. But I had to advocate for myself and my healthcare, because if I don’t, no one else will.

So, I mailed out my letter. Despite my damned phone anxiety, I plan on calling in a few days to follow up and make sure that they got it. Then I’ll make sure my next appointment is with the MD who replaced my retired doctor, and hopefully s/he will be much more attentive, compassionate, and knowledgeable. I’ve seen dozens of doctors over the last decade, and so few of them are. It’s a damned shame, because it impedes healthcare and also ruins patients’ faith in doctors. I know it sure as hell has killed mine.

I’m getting better at advocating for myself, though. Even if I’m too shocked to defend myself in person, I can always call later when my anxiety calms, or write a letter when my anger fades. Speaking of, I also wrote a letter of complaint to the hospital about the way the ER attending and some of the staff treated me. In the past year, since getting my voice back, I’ve become less afraid to speak up for myself and others. It’s never easy, but it’s always worth it.

I am worth it.

On the Wings of Hope (Plaquenil, 2 Months)

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It’s been quite a while since I checked in here with a full health update. To recap, I started Plaquenil on December 1st, 2016, along with Prednisone to get the inflammation down and give me some relief while the Plaquenil got working. Aside from a few mood swings and hot flashes, I’ve been doing well on the Prednisone; I’ll take almost anything over flareup-level joint pain, to be honest. Most of the side effects have simmered down, though. In between now and then, I came down with the flu and had some debilitating neck and lower back pain.

Turns out that the neck and back pain are probably stress related, aggravated by new pillows, cold weather, and working at the computer. I asked the APRN about it at my primary doctor’s office and she brushed me off, as usual. When it got really bad—I mean, brought me to tears bad—I went to the ER. They brushed me off too, until they saw my x-rays. Although there was no fracture or anything, the doctor could tell that I was in a lot of pain because of how ramrod straight my neck was. He said they usually see that in people with whiplash; normally, the spine is slightly curved in the neck. He sent me away with Vicodin, which makes me vomit. All I wanted was Flexeril. When I asked him if I could cut the Vicodin pills in half to avoid them irritating my stomach, he actually laughed in my face and told me that I needed to go home and chill out.

Nice, right? But this is nothing new.

A friend and then a relative gave me some Flexeril to get me through, and it worked like magic (as long as I actually relaxed, too*). During my followup with my rheumatologist, I told him that I know it’s not really okay to share prescriptions, but I just wanted to make sure it was okay to take Flexeril with my other medications. He told me it was okay, and suggested I take it at night because it can make me drowsy. He also told me to not drive on it. I don’t remember him saying he was going to write me a prescription for it, but when I got to the pharmacy, it was there.

So few doctors have actually listened to me over the past decade, never mind tried to treat me, that I actually cried in the middle of the pharmacy aisle. I’ve never been so happy to take medicine.

During my appointment, we discussed how I’m doing on Plaquenil. My joint pain is much, much better, and he said this is around the time when Plaquenil starts to work. Since I can’t stay on Prednisone for very long, I need to come off of it. He asked me what I thought about that.

I just want to note how much that means to me, that he includes me in the conversation and treatment plan. I initially wasn’t sure about him, since he seemed to be brushing me off, but ever since our phone conversation, he’s shown me that he really cares. I think a lot of doctors do, but they can sometimes forget what it’s like to be on the other side—the patient’s side.

“Well,” I said, “I’m kind of nervous about coming off the Prednisone, because I don’t want the pain to come back.” I’ll be the first to tell you that my biggest fear is my pain. Not the 5/10 pain, but the 10/10, can’t move, can’t function, feel like I’m dying pain.

He nodded, then explained to me that he isn’t just taking me off of it. We’ll be slowly tapering down, to find the minimum dose that I can stay on while the Plaquenil starts working.

In short: I won’t be just coming off it. The pain won’t be rushing right back in like it has in the past.

I’m now on 7.5mg of Prednisone a day (previously I was on 10mg). My prescription is 5mg pills; I take one and a half every morning. The brain fog struggle is real, because I had to ask him to explain to me three times how I’m supposed to make 7.5mg out of 5mg pills. But he patiently explained each time, never got annoyed with me, and when I apologized for being so slow, he gently told me that his job is to clarify for me.

I really can’t express how wonderful this man is.

A decade of chronic illness and doctor merry-go-round has made me very skeptical about doctors. I’ve been mistreated so many times, it’s my knee-jerk reaction to mistrust them. But I’m glad that I shared my concerns with him and expressed how much I need someone to figure this out with me.

Sometimes, change needs to come from within.

Though I was nervous about tapering down, I’ve been on the lower dose for a week now and I feel great. Plaquenil is doing its job! Don’t get me wrong. I can still aggravate my joints by overdoing it. (I do.) I can still have bad pain days. (I have.) It’s still possible that I can have another flareup. It’s still possible that my Undifferentiated Connective Tissue Disease is pre-Lupus. I still very much fear my pain.

But it’s also starting to feel possible to get my life back.

For the first time in a decade, I feel hopeful again.


We Need Your Help

I’m feeling better, but I’m still not able to return to the regular workforce. On top of that, my husband recently had surgery that will keep him out of work for three weeks at the minimum, six at the most. He doesn’t have a lot of sick time available and we’re already struggling. We really appreciate any help you can give us.

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*Ha! Considering I’m an indie author and have to work my ass off for every dollar I make, I’m not very good at just resting. Still, the more I stress about money and my production schedule, the more my neck and lower back hurt. I’ve also been stressing about my health insurance and all of the insane things happening in my country, which I’m sure hasn’t helped. I’ve had to actively work at keeping my stress levels down by using coping methods, relaxation techniques, and unplugging. And buckling down to write a new book.

Self-Care for Writing Through Trauma

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Note: This blog post is a raw, unedited chapter from my current work in progress, Writing Through Trauma. Part memoir and part inspiring instruction, Writing Through Trauma aims to help you write your way through difficult events in your life. Click here to join my email list to get notified when I post new chapters.


I’m scared, and overwhelmed, and I can’t fucking think straight—and it’s okay.

I just broke down in tears after 30 minutes of trying to write this post using the built-in speech-to-text software on my Mac with the damned thing not picking up half of what I fucking say. I’d hoped that talking through it would help me focus better, but I ended up completely frustrated.

If that’s not a micro example of some of the side effects of writing through trauma, I don’t know what is.

I’m stressed. Shit is falling apart in my country. I’m scared for myself and my family and friends. My health is a bit better thanks to Prednisone and Plaquenil, but my neck and lower back have been fucked up for weeks and the more stressed I get, the worse they are. I’ve fallen behind on my production schedule. I’m months behind on beta reading for my CP. Every time I try to write fiction, I feel blocked or too brain foggy to focus.

I thought I’d just buckle down today and write the next chapter of Writing Through Trauma that I’d planned—”Why Writing Helps You Through Trauma”—so that, at the very least, I might help someone who’s struggling right now too. But the truth is, sometimes it’s a double-edged sword.

Sometimes writing through trauma brings it all back to the surface and paralyzes you.

Writing has never been my enemy. For almost two decades, I was my own enemy—thanks to trauma. But I could always escape through writing. On the page, I could always be myself and speak my truth.

Right now, my truth is fuckfuckfuckfuckfuck.

My biggest fear is how debilitating my chronic illness is if untreated.

My chronic illness is a trauma. For the first 18 years of my life, I was healthy. I came down with colds, strep, and the flu occasionally, but other than that I was strong. I played softball. I went hiking. I worked. I went to school. I went bowling. Then, suddenly, I came down with mono.

It crippled me. My life came to a screeching halt for months. I only had the strength to move the 100 feet or so from my bed over to the couch. For weeks, my doctor couldn’t figure out what was wrong with me. I had severe throat and joint pain, plus debilitating fatigue and muscle weakness. I felt like I was dying. They tested for strep twice and both times it came back negative. My mom had to push for them to test me for mono. It came back positive. I started Prednisone and Tylenol with codeine, but it took weeks for me to recover. I nearly missed our family vacation to Florida. Even when we came home, I was still relatively weak.

A year later, the joint pain and fatigue came back. This time, it never went away.

It’s an autoimmune disease called Undifferentiated Connective Tissue Disease. It attacks the tendons where they connect into my joints, causing joint pain. It attacks my eyes and mouth, making me perpetually dry-eyed and thirsty. It affects my energy. It impairs my thinking, making my thoughts foggy; it’s hard to think of words, names, and places. UCTD can be pre-Lupus or pre-RA, especially if your disease has changed over the years. Mine has.

With the Affordable Care Act under attack, I face losing my health insurance and therefore my healthcare. I’m finally feeling better for the first time in a decade, thanks to my rheumatologist, Prednisone, and Plaquenil. Without my Medicaid, I cannot afford healthcare. Period. I can’t work outside the home due to my disease; most days, it’s a struggle to work from home. Mike works full-time, but everything he makes barely covers our rent and utilities. His company’s health insurance plans are outrageously expensive and we couldn’t afford them before the ACA was passed.

Mike is now finally dealing with his own health issues and, if they continue to go untreated, he won’t be able to work much longer. All I can think about lately is what will happen to us if—when?—the ACA is dismantled.

A two-month supply of Plaquenil costs about $800 out of pocket. I don’t even make $800 a month. We rely on SNAP for groceries, getting only the bare essentials and cooking everything from scratch—even when I can barely stand.

Whenever the inflammation in my body gets out of control, my joints become too stiff for me to even get out of bed. Never mind the pain. I can’t physically move. I’m utterly helpless, which is downright terrifying for a 28-year-old who was healthy 10 years ago.

Living with a chronic illness is traumatic.

I’ve spent the last 10 years trying to come to terms with my disease. I don’t know what is going to happen as it is. Facing losing the ACA takes away even more control of my life.

Trauma is anything that disrupts your sense of safety and trust in the world—your sense of normal. Anything can be traumatic, and the effects of an event vary from person to person.

With so much on my mind, it gets in the way of writing—especially when I try to write about writing through trauma. It reminds me of how much I struggled when I first began writing my trauma stories.

My therapist Erica told me, in our first session, that the end goal was for me to tell my stories. I had to pick three traumas and write about what happened. Picking three was difficult, considering I’ve been living with multiple traumas for so long, and had just experienced a fresh one.

Bullying. Assault. Rape. Miscarriage. Chronic illness. Unexplained death of a loved one. Forced hospitalization.

Every time I started writing about what happened to me, I’d get overwhelmed with anxiety. Writing about it only seemed to aggravate my anxiety, depression, and flashbacks. I kept having to stop and put it away because I just couldn’t deal.

When that happened, I had to practice self-care.

When writing through your trauma, it’s imperative that you allow yourself to write at your own pace. Recognize when you need to take a break or stop. Give yourself permission to stop. Be gentle with yourself.

For me, it had to be a gradual process. Some survivors might be able to rip off the Band-Aid, but I could only write a little at a time. First I was able to mention both of my rapists, for example, while writing in my journal. Before, I’d suppressed the bad memories; I never wrote about either of the men who raped me because I just knew that I despised and feared them. I could barely recall other things from the time that they’d each been in my life. Large black clouds comprised most of my memories, even devouring good things, leaving great wide holes.

When I was a teenager, I dreamed that a black oily substance was eating the sky. In the dream, my family and I were trying to figure out what was happening and how to stop it. Bit by bit, the sky—and world—disappeared.

I’m still trying to reclaim much of my own sky.

Since trauma survivors often suppress memories in the brain’s attempt to keep you alive, it made sense that I had a lot of digging to do. And the more I dug, the harder the flashbacks hit me.

My nightmares intensified. The panic attacks came more frequently. I was constantly snapping at the people around me—usually Mike. I knew that it was going to get worse before it got better, though, so I kept trying.

The more I wrote, the more I remembered. Even though I didn’t really want to remember because I knew it’d be painful, I really wanted to get better. I wanted to stop having panic attacks, to become motivated and productive again. I wanted to actually feel happiness, to grow stronger. To reclaim my life and my voice.

So I took my time.

I started a new bedtime ritual: Benadryl to make me so drowsy and calm, my anxiety couldn’t keep me awake; one ASMR video on YouTube or a round of Bejeweled to clear and calm my mind; one chapter of a familiar audiobook read in a soothing tone that I could drift off to; stuffed animals to hug tight while I slept. It’s been over a year and I still go to bed like this every night. Someday, I’ll be able to let go and fall asleep on my own. But for now, I give myself permission to continue this ritual for as long as I need it.

I carved out a strict workday for myself. Monday through Friday, I only work from 8 or 9 a.m. to 5 or 6 p.m. I don’t work weekends. Evenings are for my “me” time—reading, watching TV or movies on Netflix, or playing Sims. If, during the workday, my body needs some rest, I take a short 30- or 60-minute break just to sit comfortably, maybe read a book or watch Netflix.

I got myself back into a healthy sleep schedule. I’ve always been a night owl, but letting myself stay up all night and sleep until noon was hurting my productivity and affecting my mood. I use my iPhone to remind me to go to bed by 11 p.m. and wake me up at 8 a.m.

I eat three meals a day, plus snacks—no matter what. Since I’m hypoglycemic, skipping meals can make me very sick or very anxious. Even if I don’t have much of an appetite, I eat something small.

I take all of my meds on time. I use a weekly pill box with morning, noon, evening, and bedtime compartments, and Alexa to remind me to take my pills. Right now my meds are: Prednisone, Plaquenil, Tramadol, Flexeril, Vitamin B12, Vitamin D, Benadryl. I take them religiously.

When I’m not too sore, I do yoga. It’s been a while, to be honest, and I’m feeling it. I also meditate, practice deep breathing throughout the day, and write in a journal. Up until recently, I couldn’t hold a pen in my stiff, sore fingers long enough to write down the date, so had to give up journaling—which was really hard to do, and I’m really glad I can write again.

I shower regularly, do my makeup to boost my mood, and get dressed even when I’m not leaving the house. Sometimes I just let myself stay in my pajamas all day, though—whatever makes me feel best.

For you, self-care might mean different things. What’s most important is that you take care of yourself. Treat yourself as if you were your own sweet child. Be kind and gentle, but firm when necessary.

What are your favorite self-care tools? Leave a comment and tell me three of them!


Note: This blog post is a raw, unedited chapter from my current work in progress, Writing Through Trauma. Part memoir and part inspiring instruction, Writing Through Trauma aims to help you write your way through difficult events in your life. Click here to join my email list to get notified when I post new chapters.


Read More: Chapter 1

Note to Self

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You can’t catch up on old projects and work on new ones at the same time. It just doesn’t work that way, especially with chronic illness—and life in general. Sometimes, you just have to accept that shit happens and, rather than “should”ing on yourself, slow down and focus on what’s most important.

Your physical health.

Your mental health.

Your loved ones.

Your wellbeing.

Eerily accurate. #virgo #horoscope #2017goals

A post shared by Elizabeth Barone (@elizabethbarone) on

Goals can be adjusted. Production schedules can be rearranged.

So, tomorrow morning, grab a cup of coffee, let go of the things you think you should be doing, and be gentle with yourself.

You’re way more important than any silly schedule.

Fuck Arthritis

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Lately, I’ve been struggling.

There. I said it.

I had so many plans and hopes for this new year—so many things I wanted to do. Yet these past couple weeks, I’ve been mostly immobilized.

I’ve been bedridden before. I’ve spent entire winters doped up on painkillers, binge-watching whatever from the relative comfort of my bed. But this winter was supposed to be different. I’d started Plaquenil and Prednisone, and they were helping. Then they weren’t—or at least, not as much.

It started off slowly. The joints in my neck and lower back hurt, but the pain was tolerable. As a whole, I was feeling better; I could actually use my hands again. Then the joint in my neck swelled to two or three times its normal size, and my back joined the screaming chorus.

At first, I thought it was my new pillows. I’d bought a couple king-size pillows and they’re super thick. I figured I’d tweaked my neck while trying to sleep on them. I bought a less thick pillow and the pain immediately improved. Until it got worse again.

So then I thought it might be my work setup. For the past few months, I’ve been working from my couch. Not the most ergonomic setup—especially since I tend to lean into my computer when I really get into whatever it is I’m working on. I became more mindful of my body while working, keeping my neck and back more straight while on the couch. Mike joked that we should duct-tape my head to the couch to keep me from leaning forward and putting strain on that joint.

I also cleaned up my office a bit and returned to working at my desk. It’d become a bit of a dumping ground these past few months—getting more and more cluttered as I felt worse and worse. Even still, with a proper desk and chair, I can’t sit at the computer for very long. If I’m lucky, I’ll make it 40 minutes.

The only time my neck and back aren’t screaming is if I’m reclined on the couch with full blast heat on them—or flat on the floor on my yoga mat. Alternating heat and ice was helping, but the other day I iced my neck for no more than 20 minutes and it made it worse. A lot worse.

Last Thursday, I saw the APRN at my GP’s office. I had to go in for a refill anyway, and figured I’d have her look at my neck—which was my biggest concern, considering the joint is so swollen. I told her what I’d been doing: TENs machine, Advil, rest, ice, heat, Tramadol (as well as my Plaquenil and Prednisone). She said the joint was definitely swollen. I explained that the Advil was helping a little, taking it down by a notch, and told her I’d been taking two Advil three times a day. I asked her if I could take more and, if so, how much would be safe to take in a given day.

“Don’t take too much, or it’ll cause an ulcer.”

“Oh, of course! But how much can I safely take?”

“Just don’t take too much.”

I wondered whether I’d accidentally walked into an episode of Punk’d. “Okay, well, is there anything else I can do? It’s really painful.”

“The Prednisone should help it.”

“Well… I’ve been on it for a month, and this is a new problem.”

She mentioned Prednisone again, completely brushing me off.

It wouldn’t have been such a big deal, if my husband hadn’t recently been in to see her about his swollen knee. She prescribed him a relatively new NSAID: ibuprofen 800, which also has an antacid in it to lower the risk of ulcers. I don’t think she does it on purpose, but she doesn’t listen to me. There’s definitely a gender bias when it comes to patients, and until now I’d never really dealt with it so blatantly. When she sees Mike, she’s on her game, helping him with all of her expertise. When she sees me, she either laughs me  off or ignores me completely.

That’s not even what I’m really angry about, though.

Every day, I fall further and further behind on my production schedule. I try to do simple things around the house—like cleaning my bathroom—and I pay for it for days. For a brief window, I got a glimpse of what it’d be like to live with low pain. (On one particular Sunday, it went down to a 5/10!) I started to feel hopeful that I’d get my life back. I know there’s no cure, that I’ll never be pain-free again, but every time I turn around, I feel like I’m losing yet one more thing.

I haven’t worked a normal job in years.

I haven’t been able to write in months.

I’m just really tired of this disease taking from me, and I still don’t even really know its damned name.

And, if I’m being really honest, I’m a little scared.

My pain has changed; now when any of my joints creak, there’s pain where there wasn’t before, and the pain in my neck and lower back is a burning pain that creeps up and down my spine like fire. Every time my disease changes, we find another piece to the puzzle. My doctors have said so many times that something autoimmune is definitely brewing, and I’ve joked that if this is “just” brewing, I don’t wanna know what full force feels like.

So I wonder: Is this full force? Am I about to get the answers I’ve been wanting? And, if so, will I like those answers?


I have a really hard time asking for help, but I’ve got electricity/heat, student loans, and other bills creeping up on me. If you’d like to help, you can buy my books, throw me a tip on PayPal, or donate to my GoFundMe. If you can’t help financially, a comment offering virtual hugs would really lift my spirits. I appreciate your support, in whatever form. 💜

Hello, 2017

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If you’ve been around for any period of time, you know I’m all about goals rather than resolutions. Setting actionable, achievable, and accountable goals is far more productive than making promises.

Usually, I keep my goals for the year down to a short list. Recently I heard about Level 10 Life, which is basically just your life, broken down into 10 areas. You’re supposed to set 10 goals for each area—100 in total—with the objective of eventually fulfilling all areas of your life. I don’t know about you, but I don’t think it’s possible to ever reach 100% fulfillment; there’s no such thing as perfection. Plus, I think 100 goals is a bit overwhelming.

Goals are supposed to be challenging yet within reach. If you set the bar too high, you’ll set yourself up for failure.

A few weeks ago, I found a wheel of life pin that I loved. It focused on eight areas of life rather than 10, with one goal in each area. The objective is to achieve more balance in your life; once you reach a certain goal, you set a new one in that area.

I tried making the wheel of life and failed epically. After several attempts, I realized I didn’t need a Pinterest-worthy craft to help me set goals for 2017. I sat down with my white board and several dry erase markers, and got busy. This list is the result.

My Goals for 2017

Home

Get curtains for all windows. Though it has its quirks, I love our little country apartment, and hope to stay here until we’re ready to start a family. (That’s a whole other blog post, so stay tuned.) To make our place look even more home-y, I’d like to get curtains for each window. Fortunately—in this case, anyway—there aren’t many windows; our apartment was an attic in a former life. I’m starting with the kitchen, with the front door (which naturally has the oddest measurements ever, and I can’t seem to find anything). Challenge accepted!

Me

Get arrow, hummingbird, and spade tattoos. 2013 was the year I got married, and probably one of the best years of my life. But 2014 and 2015 were easily two of the worst years of my life. I lost one of my best friends in 2014 and in 2015, I lost myself. PTSD finally caught up with me and I completely bottomed out. But in 2016, I got better.

There’s a quote that really spoke to me in 2015-2016:

An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means that it’s going to launch you into something great.

I don’t know where it originated, but it really resonated with me—especially regarding my PTSD. I truly cannot explain how strong I feel. I’ve got my voice and my magic back, and I feel more me than I’ve ever felt. This is why I want to get an arrow on my ribs, on my right side—to remind me of how I shot forward in 2016. Something simple and delicate (my ribs do swell, after all, so tattooing that area might be a bit… challenging). Something like this, in this same spot:

I think this design is the one I’ll go with.

I’ve long wanted to get twin hummingbirds on my collarbones, for my Popi. He loved watching the birds at the lake, and the “hummers” were his favorites—especially the ruby throated hummingbird. Growing up, I always felt enveloped by magic whenever I could look fast enough to see them. Popi had hawk eyes and saw everything; he was the magic.

I like the general placement of the hummingbirds in the above pin, but I don’t love the design. My plan is to have Jay—the artist who did my hydrangeas and tiger lilies—design and tattoo my hummingbirds. I love his style and I know he’ll help me come up with something I love.

Finally, I want to get a spade in memory of one of my best friends, Sean. He loved spades—I’m pretty sure it was an old nickname, though I have to check with his girlfriend to make 100% sure—and had one tattooed on his forearm. I’ve been racking my brain, trying to figure out the perfect tattoo to remember him by. It suddenly dawned on me the other day that I should get a spade. I’ll probably add it to the sleeve I’m working on, on my left arm.

I’d like to get something for my Biz Noni, too, but for one, I’ll be lucky if I can afford three tattoos in one year. Plus, I kind of already got something for her: my hydrangeas around my Fievel. She was still alive back then, but my dad was talking about transplanting her hydrangeas in the yard. I thought about how amazing it was, that those hydrangeas stubbornly continued to bloom year after year after year—even though she couldn’t physically get outside to nurture them anymore. It reminded me of her; she was “up there” in age, but remembered everything and had survived much. I got the hydrangeas tattooed as a reminder that I can survive, too, even in the toughest of circumstances.

Money

Pay off all debt and past due bills. I won’t bore you with the details, but between my student loan, some credit cards that I opened to help us out, our bills, and my creative team from Booktrope, I’ve racked up a teensy bit of debt. I say “teensy” because I was panicking but when I added it all up, I realized it’s really not that bad. Some people are thousands of dollars in debt; I’m only about $5K in. Still, I’d really like to make it go away—especially the damned student loan that’s been hanging over my head for years.

Long story short, that student loan is from a half semester that I had to withdraw from due to health issues. It was too late to withdraw without penalty, so I got stuck with the bill. I’ve been trying to pay that thing off for almost 10 years now.

My accumulated debt grew to a ginormous monster in my head. I’d wake up in the middle of the night, heart pounding, terrified I’d go to jail for delinquency. That’s totally not the case, but anxiety lies. When I actually broke it down on paper, though, it suddenly became a teeny baby monster. Now that I’m writing for Textbroker and regaining momentum in my career, it doesn’t seem completely impossible to overcome, either.

They say the best way to pay off debt is to make regular payments on everything while going really hard at one particular bill. I haven’t quite decided which one to tackle first, though.

Career

Finish all currently open series. 2016 was all about regaining some lost momentum; 2017 is going to be all about closing boxes.

Right now, I have three unfinished series: the Comes in Threes, Not Just Any Love, and South of Forever series. While the Not Just Any Love series is actually just two companion standalones (Just One More Minute and the forthcoming Char/Amarie novel), the Comes in Threes series has been in limbo for almost four years.

I’ll be releasing the final South of Forever book soon, and then my plan is to get back to Quinn, Tara, and everyone else from Crazy Comes in Threes. I’ll be rewriting CCIT; I won’t be changing anything about the story, but I’ll be making some structural changes—that way I can pull off my master scheme. I’m super excited about what I have in store. More news on that soon!

Marriage

Go on one date every month. Thanks to the holidays, health issues, and financial stress, Mike and I haven’t been able to spend much time together lately. Our hot dates have recently consisted of doctors’ appointments and him helping me put pants on. So romantic. 🙄 Not!

Money is beyond tight, but I’d really like to do something every month—even if it’s just a movie night in. We’re both always busy, but I make sure we eat dinner together (unless he’s working), with no tech at the table so we’re really focusing on each other. Still, I’d like to do actual dates.

Last month, my Noni got us a gift certificate to our favorite sushi place, so we went to lunch after my rheumatology appointment. (Note to self: blog about that ASAP.) It was nice to get out and spend time together, and we have enough left on the gift certificate to do it again. Little things like that keep our relationship strong.

Family

Host at least one family dinner. Due to my arthritis, it’s really hard for me to pull off gatherings at our place. Not only is it physically difficult, but it also takes a major toll on my energy. The last time we hosted anything was Mike’s birthday party—in October. It was so nice to have both sides of our family all together, but I paid for it dearly in the days after. I always do.

Originally, we really wanted to host weekly Sunday dinners, but that’s just not possible. I’m slowly adjusting to my limitations, which means not pushing myself and accepting things for what they are. Still, I’d like to have at least one Sunday dinner this year; they were a huge part of Mike’s family when he was growing up, and it’s really important to him that the tradition continues.

My plan is to give Plaquenil and Prednisone some more time and, when the weather gets warmer, set a date.

Health

Find a treatment that brings pain down to a 4/10. I’m hoping Plaquenil is The One. I’ve accepted that I’ll probably never have a zero pain level again, but if my new normal could be a 4/10, that would be great. At that level, the pain is tolerable; once it gets to five or even six, it’s debilitating. Honestly, I’ll even take a five at this point; last Sunday, it got all the way down to a five, and I felt amazing. It’s been an eight lately, which is still better than a nine or 10.

But four is about my normal level when I’m not in a flareup. If Plaquenil can decrease the flareups and their severity, I’ll be happy.

I’d also really like a diagnosis more definitive than “it might be Lupus” or “it’s definitely enthesitis-related arthritis.” Right now, my chart has Undifferentiated Connective Tissue Disease (UCTD) as my diagnosis, which translates to “undiagnosed autoimmune disease.” It means there’s definitely something inflammatory and autoimmune going on, but my labs are inconclusive. There are two camps in rheumatology: one that relies more on symptoms to diagnose, and the other that relies more on labs. My rheumatologist falls into the latter, and so did my former rheumatologist. There’s nothing wrong with that, but for my own closure, I’d really like to know the name of the disease that has completely and irrevocably changed my life.

I may never get that. I may have to practice accepting that. Time will tell.

Passion

Write “writing through trauma” book as a blog series. I’d like to tell my story—and help others write through theirs. Writing has long been a huge part of my life. I’ve written my way through every major event, be it in a journal or weaving my pain into a novel. The most important writing I’ve ever done, though, were my trauma stories.

I’d like to teach others how to write through their pain. Eventually, I’d even like to lead workshops for local organizations who help sexual assault survivors, but I’ve got to start small. That, for me, means writing a how to book.

I’ve started several times. I keep getting stuck because I’m not sure how much of my personal story I should share; I don’t want to take away from the advice I’m giving, but I’d also like to show how writing through my own trauma helped me. I’ve decided to take my outline and the roughly 10K words I’ve written, and turn it into a blog series that can be later converted into a book. This way, I can get some reader feedback on it while I’m putting it together.

Stay tuned, because that will be starting very soon.


What are your goals for 2017? Let me know in the comments!

I’ve Got the Damn Flu

via GIPHY

The other day, right after I finished bitching about my “super bug” here, I found out that my girl friend, her husband, and her youngest daughter all have the same thing—killing my theory that this was just my immune system being an asshole. My girl friend said she and her husband were convinced it’s the flu, which made me stop and think. I’d said several times to Mike that this felt like the flu. Could it really be, even though I’d gotten my flu shot?

For hahas, I looked up flu symptoms and yup, it’s the flu—to a T. I had to come out of denial and surrender to the enemy. It was way too late for Tamiflu, so I’ve had to just ride it out: DayQuil severe, Gatorade, ginger ale, and rest. I didn’t bother with seeing a doctor, because there’s nothing they can do for me.

via GIPHY

12 days in, I’m still exhausted. Today I have a bit more energy, so I’ve mostly been reading Let’s Get Visible by David Gaughran on my iPad and doing some administrative things with my books (categories, keywords, etc)—when I have a bit of energy. The tiniest things wipe me out, which sucks. I’ve said “This sucks!” more times in the past two weeks than I have the entire time I was a surly teenager.

I didn't put up our tree this year (flareup + flu = no energy), so this is our tree. 🎄 Happy holidays!

A post shared by Elizabeth Barone (@elizabethbarone) on

I’d planned a blog hop, which pretty much got blown because almost 50% of us have the damn flu. I’d also planned on finishing beta reading for my CP, which I’ve been doing in tiny bursts. And I’d planned on re-outlining SOF4 this week, but my brain is mush, I tell you.

Damn you, flu! *shakes fist at sky*

Mostly, I’m trying to save myself for Christmas Eve and Christmas Day. I mentioned in a previous post that Thanksgiving was basically a bust for me, so I’m determined to enjoy Christmas.

I’m not good at resting. I’ve always been a go-getter, so one of the things I’ve struggled with the most since getting sick in 2007 is just resting. I’m stubborn and impatient, so sitting still is not my forte. I’m absolutely sick to death of Netflix right now, so reading marketing books is a compromise. And even then, I can only do it in bursts because brain fog.

Just writing this blog post will cost me—which feels pathetic to me and not many people understand how this can be. But that’s the thing about autoimmune diseases and chronic illness in general; the invisible illness takes such a toll on your system, it’s exhausting. Throw in an illness like the flu, and you’re microwaved zombie.

You’d think, after almost 10 years, I’d be used to this by now, but no. I still hate it, I still get frustrated with myself, and I still stubbornly try to push my body. But the harder I push myself, the more I pay for it after.

The good news is, the flu won’t last forever, and the Prednisone/Plaquenil cocktail I’m on now should help with the pain and fatigue. Granted, it’ll be about six months before I notice any real difference. In the meantime, I need to practice patience with myself—which has been a theme in my life.

I’m getting there.


Need to get in the holiday spirit? I’ve got goodies for you!

Happy holidays!

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.

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

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

via Unsplash
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?!