Today I’ve been on Plaquenil for exactly one year. While Plaquenil and Prednisone worked really well for my joint pain, both gave me some unfavorable side effects. Prednisone made my blood sugar skyrocket and threw some of my other labs off, so I had to wean off it. Plaquenil did okay on its own, but for some reason the GI side effects—diarrhea, heartburn—just keep getting worse. I had to come down to one pill a day instead of two.
I’m feeling it.
My rheumatologist said that if I flare, she’ll put me back on Prednisone, so there’s a good chance I’ll be starting it soon. I want to feel better—and I really want my hands and hips back—but I’m scared of the high blood pressure, freaky blood sugar, and weight gain. So I may have been holding off on making that phone call.
It feels like I can’t win.
This may be TMI, but Plaquenil can be an outright asshole. At first it seemed like it wasn’t getting along with dairy, but now it seems to give me diarrhea randomly. Heartburn, too. You’d think those are minor side effects, but trust me, they can quickly ruin your day. And your night.
Still, I look at posts and pictures from a year ago, and I know these two medications have saved me, side effects be damned. It comes down to a choice: would I rather debilitating joint pain and fatigue, or random bouts of diarrhea and heartburn, paired with high blood pressure, blood sugar spikes and crashes, and hot flashes?
I’m trying to hang in there until my rheumatology appointment; playing phone tag is not my idea of fun, and I get shitty cell service in my apartment, which makes it even worse. I’d rather speak to her in person and go over our options. (She’s wonderful on the phone, too, but connecting is always a challenge.)
My appointment is almost two weeks away, though, so I’m gonna have to call.
It doesn’t help that I’m facing losing my health insurance, but that’s a whole other post. The gist of it is, my state changed its income regulations this year and we are now just a couple hundred dollars over the requirement. Yet we can’t afford a monthly premium and we sure as hell can’t afford appointments and prescriptions out of pocket. A friend suggested I can appeal the denial, but we weren’t denied—I’m stuck in an Access Health CT website loop. (If you live in my state, you know what I mean.) So that’s another phone call I’m dreading but have to make.
It’ll work out, though. In the meantime it’s all about managing my pain and anxiety.
On the plus side, if I start Prednisone again, I’ll be able to take notes for my classes. (My hands have not been digging this whole pen holding thing.) I’ll also be able to type faster.
And did I mention that my beautiful Christmas cactus is now a year old? It’s now so full and there are several vibrant blooms (with dozens more budding). A month ago, it didn’t seem like it was going to bloom at all. A year ago, I wasn’t sure I could keep it alive. (I’m all right with succulents, but this one came from a pharmacy and I didn’t know how it would do.)
There’s a metaphor in here about patience and faith. I think.
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.
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.
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