Summer Flare Makes Me Feel Fine

Photo by Erik-Jan Leusink on Unsplash

I’ve been flaring for just about two weeks now. Yesterday was particularly bad. I ended up calling it a day early and resting on the couch.

I think it has to do with the weather; the temps here have been in the low 70s, getting pretty chilly some nights. It’s been pretty miserable. After so many days of pain, I become convinced that I’ve never had pain-free days and never will again. Pain is smothering like that.

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Still, a few good things happened yesterday:

  • The healthcare bill vote has been delayed because the GOP didn’t have enough support. It’s not dead and bloated, but we blocked that son of a bitch. And we’ll keep blocking it.
  • I crossed 20,000 words for my WIP.
  • I got some potentially good news about a family member.

That’s how I’ve been getting through this flare. Focusing on the good. That and Advil twice a day, Tramadol at night. I haven’t really been sleeping, either, but last night I finally slept decently. Sheer exhaustion? Maybe. But I’d like to think that since my mind was eased a bit, I could burrow through the pain and rest.

I hate summer flares. They don’t happen often. My last was a couple years ago. I really didn’t expect one this summer, since Plaquenil has been working so well for me. Hopefully it’s just a weather thing—maybe we’ll just need to adjust my meds. I see my primary this week and my rheumatologist at the end of the month, so we’ll see.

I’ve Got the Damn Flu

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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.

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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!

Who Wears Short Shorts? (Plaquenil, 2 Weeks)

It’s been two weeks since I started Plaquenil, the DMARD that will hopefully get my undifferentiated connective tissue disease under control. (That’s just fancy doctor speak for “undiagnosed autoimmune disease.”) I’ve also been taking Prednisone, a steroid. It’ll take up to six months for me to notice any real difference on Plaquenil, so the improvements I feel are all thanks to Prednisone.

Already my morning stiffness—haha—is down by like 90%. I’m still stiff, but I can move, which is amazing. When my alarm goes off, I don’t have to lay in bed for an hour before my body will cooperate. I now usually just lay flat on my back for a few, because my lower back has been killing me lately—especially when I first wake up. Once I’ve taken my morning dose of Prednisone, though, things start to calm down.

I’ve had minimal side effects with Prednisone. I’ll get a couple hours of hot flashes, but those go away. It doesn’t keep me awake at night, either (though I have plenty of painsomnia to keep me company). Usually, once it kicks in, I’ll change into shorts and a tank top—I kid you not. It’s been like 20°F outside and I’m wearing shorts in my house. (That’s -7°C for my non-American friends. Brr!)

These past couple weeks have been relatively smooth sailing. I even got back into a human schedule; I’ve been trying to be in bed by 10 p.m. and up by 8 a.m. Getting up is easy. I have so much work to do—that I’m excited about—and can actually get out of bed, that I can push aside any fatigue. The sleeping part… not so much.

Once Prednisone wears off for the day, the pain comes rushing back in. Plus I may have pushed it a couple times these past two weeks. Last weekend, I helped with my godson’s birthday party. We had 20 kids. 20! It was insane. I also ran after my littlest godson, who asked if he could go to the car, then the poor kid went the wrong way. He was technically doing right. We just didn’t consider that we all moved the cars around and that he might get confused. So Auntie went tearing after him in a total panic (even though my goddaughter was already almost to him). Talk about an adrenaline rush! Which I promptly paid for.

Still, it’s kind of cool to know I can still run; thinking about having kids always freezes me up, because I’m a little scared I won’t be able to properly care for them. Well, adrenaline is my best friend! If I do have kids, I’ll be just fine.

I did yoga the other night—the easiest, most gentle three poses I know. Well, I don’t know whether it’s the super cold temperatures or what, but my joints did not like it. My joints have always snapped, crackled, and popped my whole life, but it doesn’t usually hurt. Well, these past few days, it’s been agony every time. And within minutes of my little yoga sesh—which I was so excited about, because I finally felt physically up to doing it—I was deeply regretting it. My hips, knees, and lower back were screaming. And making sounds I’ve never heard! So, suffice it to say, I’ll hold off a bit longer before I get on the mat again.

I’ve also come down with some kind of cold thing. The most annoying part about being autoimmune is that I get every sickness double. Meaning, if I get a cold, it knocks me on my ass. It also usually attacks my joints. It’s like my immune system gets ultra confused and goes completely haywire.

Thankfully, it isn’t too bad. My joints are actually relatively okay. It’s my throat that isn’t having fun. I’m also ultra-fatigued, and kinda wandering around in a cloud. We all got sick after the party, and my poor goddaughter was miserable the other day. At one point she said to me, “I think I took your suggestion and made ramen, but I don’t remember.” Now I understand why; yesterday, I was all kinds of foggy. I was still able to get some work done, though, and today I plan on tackling even more. My couch is my other best friend; I just pull up the recliner, put my MacBook Pro on my lap desk thing, and work in comfort. The recliner keeps the pressure off my lower back, hips, and knees.

Honestly, I’ve been pretty content lately. That’s probably a whole other post, but I just feel very grateful for the way my life is. I’m still going easy on my wrists. Instead of doing any writing, I’ve been working on administrative things (like my annual inventory, which needed to be done anyway). I’ve also been writing for Textbroker, but limiting myself to one article a day for now. (Textbroker is a freelance platform for copywriters; I can look through all of the assignments, choose what I’m interested in, write the article, and get paid within a couple days. The pay isn’t the greatest, but it’s working out perfectly for me and my situation—plus I’m earning extra money without leaving my home.)

Lately I’ve been missing social media, so I don’t think it’ll be long before I’m back. However, I’ve decided that when I do come back, I’ll be limiting myself to about an hour a week. I have to rest my wrists as much as possible, and it’s also been really nice to take a break from all the negative headlines. This is also a whole other post, but I’m an empath and need to practice lots of self-care so that all the bad news of the world doesn’t completely rip my heart to shreds. I accidentally heard about Aleppo and I’ve been intermittently sobbing ever since.

All in all, though, I’m very optimistic that Plaquenil and Prednisone are going to help me. Unfortunately I can’t stay on the Prednisone for long. I see my rheumatologist next week, so I’m sure we’ll discuss that then. From experience, I know that within a couple days of stopping it, the flareup is going to come raging back. But I have faith that Dr. S will take care of me. I’m in good hands—especially after advocating for myself.


In case you missed it, the Just One More Christmas holiday novelette starring Matt and Rowan is now available! Read the first part here, then grab your copy for only $0.99.

Bottoms Up! (Plaquenil, Day 1)

My new Christmas cactus, and my pillbox full of Plaquenil (December 1st, 2016).
My new Christmas cactus, and my pillbox full of Plaquenil (December 1st, 2016).

My goal for my rheumatology appointment this morning was to walk out with some kind of progress. Any progress. I just wanted to move toward getting my life back. That’s all I’ve wanted for the past decade.

On Thanksgiving, a week before my followup appointment with my rheumatologist, I’m so miserable I consider going to the ER instead of family dinner. Every joint in my body is stiff and agonizingly sore. The pain keeps me awake at night. I’m so stiff, my husband has to help me get dressed. I’m 28 years old and I was raised by strong women; I’m used to doing everything myself. I feel powerless. Mike feels useless. We go to Thanksgiving dinner under a blanket of defeat.

My sister-in-law is having her own health troubles. I want to help her and be there for her, but I’m nearly incapacitated. My mother-in-law takes her to the ER, and I stay behind with the guys to finish and eat dinner. While I’m taking my plate to the sink, my left ankle goes out.

It’s so sore, I can’t bear weight on it. I swallow back tears; surrounded by a bunch of tough guys, I don’t want to cry like a little girl. A well-meaning family member gives me a Percocet to get me through the rest of the day. It helps, but it’s strong; by the time I get to my grandmother’s, I’m in a haze and I hate it. My body doesn’t have to fight off pain anymore, so I can finally rest, but I struggle to stay awake during dinner.

My aunt brings me home early, and the second I get home, I start vomiting. I’m not used to medicine like Percocet. It’s too strong. I throw up for hours, on my aching hands and knees on the bathroom floor in front of the toilet. The pain comes roaring back, and I have to limp-run to the bathroom every half hour. By some miracle I make it to the toilet every time.

By the time Mike gets home from work, I’m dehydrated and exhausted. I probably should go to the ER, but I’m disoriented. Mike brings me ginger ale and I struggle to keep it down. I curl into a ball in bed and hope the morning brings relief.

I stop vomiting, but the pain and stiffness keep me in a haze of hopelessness.

I decide to unplug from the internet so that I can focus on my health, as well as work that I’ve fallen behind on.

It’s two nights before my rheumatology appointment, and I can’t sleep. My body is exhausted by pain, fatigue, and stress, but my mind is wired with anxiety. I’m worried that once again my appointment will end in disappointment, that I’ll once more feel brushed off, that I’ll still feel like I’m just spinning my wheels.

I try everything I can think of to fall asleep.

Cleaning, to work off that anxious energy. I do dishes, soak kitchen towels in bleach in a bucket, and fill my sink to soak cutting boards in bleach. I consider sweeping and mopping, but my body isn’t up to it. I’m tired all the way down to my bones. Even with pain medicine, my joint pain is agonizing.

In bed, I play Bejeweled on my iPhone to quiet my mind, and watch ASMR videos to help me drift off, but it’s useless.

I toss and turn all night, unable to get my body comfortable, unable to shut off my worries.

One day before my appointment, I wake up anxious. I want to tackle my To Do list; I have a lot of work to do but it will also help me get my mind off my pain and anxiety. Everything that can go wrong does. I spend hours trying to fix my antivirus; its firewall is blocking my internet. All I want to do is work off my anxiety, which grows by the second because I can’t fix my computer and I’m falling even more behind on my To Do list.

By the time I solve the issue, my fingers and wrists are so stiff and sore, I barely get any writing or any other work done. Instead of cooking the chicken parmesan dinner I’d planned, I make ramen and binge Buffy the Vampire Slayer on Netflix. I need a hero.

After dinner, I spend hours writing up a seven-page document for my rheumatologist. I define my goals, outline my medical history (completely healthy before this illness set in), list my symptoms and trouble joints, describe treatments I’ve tried, tally activities that are affected by my chronic arthralgia, stiffness, and fatigue, catalog various labs that have popped up over the past nine years. My hope is that, by laying all this out for my rheumatologist, he can piece together whatever it is that’s wrong. Going through the document makes me realize how very bad this disease actually is.

Before I got sick, I played on a city softball team. I was the catcher. I had to stop playing because I couldn’t move fast enough to make bases or catch balls.

Before I got sick, I worked multiple jobs and at one point even had my own web design business. I had to leave the workforce because, sitting or standing, my body couldn’t handle the demands.

After I got sick, I went back to school to become an elementary school teacher. I was seeing my first rheumatologist, Dr. Greco, and the medication I was on had nasty side effects. The pain and fatigue pulled me further and further behind on my studies; both my grades and GPA plummeted. My fellow students either ignored or made fun of me. A girl who I thought was my friend ditched me on our way to an exam, and started treating me badly. The stress of being sick and trying to get through school was too much on my body. I withdrew and never went back.

Those are only three of the things I’ve lost.

I print out two copies of the document—one for me and one for Dr. S—and prepare to go into battle the next morning. Once again, I’m fighting to get my life back. I’m fighting to advocate for myself, to be heard. To not be erased.

Right as I’m about to lie down, my hypoglycemia flares and my blood sugar plummets. Tramadol wears off and the pain comes roaring back up to a 9/10. I make more ramen. Midnight comes and passes. I lie down again and calm myself with ASMR videos and one of the same threes audiobooks I listen to every night. Eventually, I fall asleep, but the pain wakes me intermittently. I can’t get comfortable.

My mind starts to run through scenarios: what I’ll say to Dr. S, the kinds of questions I want to ask, the what-ifs. Usually I just sit with my anxiety, let the feelings in, and examine them. But I have to get to sleep so I can be fresh and on my game in the morning. I slam down steel shutters, bottling up my worries. But they leak in anyway.

Between the pain and anxiety, I barely rest.

The morning of my appointment, I wake up over two hours before I’m supposed to be there. The plan is to have enough time to sit and let my joints un-stiffen. Of course, nothing goes according to plan.

My alarm goes off but I’m foggy and my bones scream for more sleep. I set it for another half hour and drift off immediately. It seems like only minutes later my alarm goes off again.

I have to get up, or I won’t have enough time.

Even though I’m too nervous to eat, I make oatmeal and coffee. I eat half my bowl and drink a third of my coffee. My mouth is so dry. I take my morning medication—vitamin D and one of my two daily Tramadol—and slowly dress, do my makeup and hair, and gather my papers and planner. Mike is off from work, so he drives me. A few days before, I asked him to come into the exam room with me and fight for me, to back me up on everything I’m saying—to explain how he has to help me do simple things like get dressed, to parrot what I tell the rheumatologist. It’s a proven fact that doctors take men more seriously. Mike is skeptical, but agrees to help me advocate for myself.

I leave our apartment armed with my seven-page document and husband. The only weapon I’ve ever had are my words. On the drive over, I mentally repeat affirmations: I am strong, I will accomplish my goal of progress, I am beautiful, I can do this. I lift my chin while fending off doubts.

I’m still worried that my rheumatologist will brush me off again.

In the exam room, he gets right down to business. He remembers our phone conversation where I all but begged him to help me, to listen to me, to sleuth this out with me. He starts off by reviewing my last labs and our phone conversation about trying Plaquenil. I’d intended to start off by asking him if we could go over the last decade, but didn’t want to interrupt him. He sees my papers, though, and asks if I have something for him. I pass over his copy.

I explain that I thought it might be helpful if we reviewed everything. He seems surprised and impressed. So we do. He asks questions. I give him answers, referring to my document when the fatigue and brain fog set in and I can’t remember. We talk about how I have flareups and remissions, about how the stiffness and intense pain lasts hours in the morning and then I have a small window midday when it calms down, how I’ve taken Prednisone in the past and it helped kick my flareup both times.

Dr. S says he definitely doesn’t think this is Fibromyalgia, because of the stiffness. But he also explains that usually with Lupus, there are other markers. I only have the anti-dsDNA, so it’s difficult to diagnose. But there’s definitely something autoimmune going on. I tell him about how Dr. Greco, my first rheumatologist, explained to me that I’m on the very bottom of the bell curve; something is definitely brewing, but I’m right on the edge and it’s hard to tell what just yet. Dr. S says that’s exactly what he thinks, and that he wants to monitor how this progresses.

But he also doesn’t want me to be in so much pain, and to be unable to perform daily activities. I tell him that’s all I’ve wanted for the last nine years—to get some of my life back.

He decides to start me on Plaquenil, cautioning me that it could take up to six months for me to notice any difference. We both have to be patient, he says. He suggests I keep a diary: rate the pain, list activities I’m having a hard time doing, etc. That way we can track how well Plaquenil is working. I now take 200mg of Plaquenil, twice a day—400mg in total. On this, I can expect very low side effects; he said maybe one day of diarrhea. It’s nothing like Sulfasalazine—no headaches or metallic taste, and no liver and kidney damage.

He’s also got me on Prednisone for a few weeks, to help kick the flareup while Plaquenil starts working, since we know it’s worked in the past. I’m taking 10mg of Prednisone every morning. It’s a low dose, so I can expect less intense side effects. In the past it’s made me dizzy and sweaty, and made my heart race and kept me up all night. I’m to take it first thing in the morning, to lower the chance of it keeping me awake.

I thank him profusely. Along with this new DMARD, he’s given me hope.

Mike and I go to our favorite sushi restaurant to celebrate. They have a lunch special and I owe him money for the printer ink he bought me the other day. We reconnect over sushi and when I get my fortune, I’m delighted.

“You have had a good start,” it says. “Work harder!” This is heartening.

We head over to the pharmacy next. I go in without my wallet, because I’m only there to pick up my prescriptions and my insurance completely covers them, but when I walk in, there’s a display full of live Christmas cactuses. Their pink blooms are beautiful, and they remind me of my Biz Noni—who always had one. I can’t walk out of there without one. They’re only $3.99, but with my savings card I end up saving a dollar.

I walk out with all kinds of new hope in my hands, hands that can’t hold much these days but are so open to catch whatever tools life wants to give me to fight. Like I told my rheumatologist, I’ll do just about anything to feel better. I just need someone to give me a chance.

In the car, on the way home, I take my first dose.

Prednisone still tastes awful going down. I’d forgotten how bad it tastes. But the Plaquenil has no taste and, unlike the SSZ, it doesn’t leave a film on my hands.

It tastes like hope.


If you’d like to help, I currently have a GoFundMe open to help my husband and I catch up on our bills. You can donate here. If you prefer, you can donate through PayPal. Or you can purchase any of my books, which not only supports me but also my writing! Paperbacks coming in 2017.

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