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. 💜
It’s five in the morning. My joints are bright hot fireballs of throbbing death. I’m exhausted and have been all day, but the pulsing ache in every single joint of my body is like an alarm clock blaring in my ear. When I’m in pain like this, all I can focus on is the pain. All I want to do is whimper. The only thing I can talk about is how much pain I’m in.
My chronic pain runs my life.
The thick gray smudges under my eyes, the tangled nest of curls bundled up on top of my head, the inward curve of my shoulders—all of it a portrait of the pain I live with when I don’t have a DMARD combatting the inflammation in my joints/tendons. And I’m frustrated all over again, because I’ve been denied those medications. And I’m really feeling it.
I got comfortable. I’d been on SSZ and maybe I took it for granted. Constant headaches and a perpetual metal taste in my mouth seem easy compared to what I’m feeling right now. Maybe I shouldn’t have complained. Maybe I should have kept swallowing the pills and taken what little relief they gave me. I was ungrateful, and now I’m paying the price. The warm summer months rolled in, easing my transition off SSZ. I went swimming. I ran errands. I cleaned my house.
Now I’m lucky I can move at all.
I hate the cold months. I know everyone is reveling in fall right now, but all I want to do is give those who are celebrating sweaters and Instagramming photos of leaves the stink eye. Because for me, October through May is hell unleashed.
If it hurts to die, this is exactly what it feels like.
I don’t mean to be melodramatic. It is five in the morning and I should be sleeping. I’m usually sleeping at this hour. I have places to go and things to do during normal morning hours, yet I will have to choose between resting and getting blood work done. My knees and hips hurt so badly, I feel like I need a wheelchair.
I’d go to the emergency room if I thought they could do anything.
What I need is a different DMARD and a hefty dose of Prednisone to get me through until it starts working. I need a doctor like the ER attending who knew that inflammation was my issue, even if my blood work said otherwise. I need someone like the PA I used to see, someone who listens and won’t give up. Dr. M was becoming that someone, but she left the practice. And now I just feel so fucking lonely and depleted.
I don’t know how I keep doing this. Living with this is the hardest thing I’ve ever done, hands down. And I’ve been through a lot of difficult things. I’m not saying I’d rather go through them again—they were eviscerating enough on their own, thank you—I’m just saying that this is so hard and I’m so tired. I’m out of spoons—emotionally, mentally, and physically.
I’m done yearning to be normal. It’s been nearly a decade. At this point, it’s not going to happen. I just want some kind of quality of life. I don’t want to burst into tears because I’ve dropped the cap to my water bottle and can’t physically make it across the kitchen floor to retrieve it. I don’t want to feel lonely at almost 5am because my husband went to bed hours ago. I don’t want to slap a temporary painkiller Band-Aid on my gunshot wounds, hoping that Tramadol will bring my pain down to a 8/10. I don’t want to feel like I’m missing out while my husband, brother-in-law, and niece hang out at a gallery and I stay home because I feel like microwaved zombie.
I’m just so fucking tired.
I’m not going to do anything more drastic than smoking a cigarette, but I need all of the love, strength, and support that I can get right now. I feel almost cheesy asking for this, but if you can even just leave a comment with hugs, that would be so helpful.
This probably goes without saying, but I’m taking Wednesday off.
On the bright side, I wrote 400ish* words for SOF4, and it’s officially #OwnVoices because I’ve given Krista my enthesitis related arthritis. Tonight’s—this morning’s?—session was basically just a long description of how much everything hurts her, AKA me. Here’s a little snippet:
Hot twinges buried themselves in Krista’s knees, bringing the world into razor sharp focus. She winced, then quickly smoothed the expression on her face.
“We’ve got to do something,” Perry repeated. “The entire band’s gonna implode if we don’t handle this.” A large curled fist lightly smacked the palm of his other hand, punctuating his last few words.
Her cheeks twitched into an involuntary smile. His passion was endearing. “I’ll let you know,” she said softly, her shoulders curling inward. Sliding her phone from her pocket, she glanced at the time. Shit. It was time to get to class. She swallowed hard. She barely had the energy to walk there, never mind sit through the lecture.
“Hey,” Perry said, his voice low and soothingly warm. “You all right? Your cheeks are kinda flushed.”
Great. She inhaled through her nose, gathering her strength. “I’ve got to go.” With every ounce of energy, she pushed up from the bench. “I’ll talk to you later?”
He shrugged. “Sure thing.” He raised his coffee in a salute.
Turning, she forced herself to walk away like a normal person. Her joints protested, the ache deepening. If that was even possible. She gritted her teeth, stifling the scream rising in her throat. She was so tired—tired of being in pain, tired of trading her life for more rest. And now, with South of Forever in such a bad position, she was going to be even more tired.
* * *
Krista was in a bad mood when she finally got out of class. For one thing, it’d run fifteen minutes over. The pain in her knees had increased, as well as taken residence in her elbows and wrists. For some reason, the knuckle of her left thumb was aching, too—a hot, pulsing flare. Yet, from the outside, her body looked completely normal.
Her phone buzzed in her pocket. Stepping off to the side of the hall she was walking through, she fished it out and read the text from Poppy.
Where are you? We need to start recording. xx
The double exes were like a haphazard “LOL,” thrown in as insurance. Their sole purpose was to placate the terse, demanding tone of the other words. Krista was fluent in girl speak.
Sighing, she texted back a simple “OMW,” and resumed her trek toward the building exit. Her body protested with each step, hinges stuttering when they should have bent smoothly. By the time she got to the double doors, she’d made up her mind.
She opened the Uber app with a quick swipe and a tap, not even bothering to look at the screen. She knew her iPhone better than she knew her own body—a fact that was twice as true, since said body was constantly rebelling. She longed for the warm summer months when she’d have little pain.
Her heart whispered “Soon,” and she shuffled through the double doors and into the sunshine.
*I initially thought I wrote like 600 words, but I just checked the word count and was kind of disappointed. But something is better than nothing, right?
It’s been over 24 hours since everything went down and I’m still processing it. Everyone processes things differently—even from experience to experience. Sometimes you need to talk, even if you’re relaying the same information over and over. Other times you just need to quietly mull. I’ve found, in this instance, I’ve needed both space to just absorb and room to articulate.
Even though I’ve talked about it a bit on Twitter, written in my journal, ranted (like a hundred times) to my husband, vented to my sister-in-law, and tiredly filled my best friend in, I still keep running through it over and over again. And, even though technically I’m on a weekend-long social media cleanse, I really felt the urge to sit down and blog about it.
So here I am.
Part of me is in shock, enveloped in complete and utter disbelief. And then there’s the wide-eyed anxious part of me that is all, “See, I told you so.” I’ve been through this before, though, so many times. It’s not really surprising. It’s kind of just my norm.
This past summer, I got a sudden letter in the mail from my rheumatologist’s office, telling me that Dr. M was leaving the practice. I had a panic attack while reading the letter. While I’ve had a complicated relationship with this woman—during my first ever appointment with her, she suggested I see a psychiatrist and that was that—I’d made a lot of progress with her. She was listening to me, she’d given me a diagnosis, and she’d started me on a treatment plan. I spent years jumping through hoops trying to prove to her that I am not a drug addict or crazy. And finally, after nearly ten years, I was making progress in my medical journey. I was getting my life back.
I have joint pain. Often it is debilitating. There is radiological evidence of it; I’ve had several x-rays, MRIs, and even a bone scan that showed bone spurs and some other things in my joints. My illness causes marrow-deep fatigue. It flares from time to time, especially during periods of high stress or sudden changes in weather (like winter, rapidly increased humidity, or a drop/rise in barometric pressure). It behaves like an autoimmune disease—which runs in my family. However, my blood work is always inconclusive. I am seronegative for RA and I’ve had borderline results for ANA and double-stranded DNA.
Dr M determined that I have enthesitis-related arthritis, meaning the join pain is caused by inflammation in my tendons, where they connect to my joints. She explained that ERA doesn’t show up in blood work. She told me that she would treat me as if I have Reactive Arthritis, but that it could still be Rheumatoid Arthritis. She started me on a DMARD and, when it helped a little but had some nasty side effects, urged me to give it another shot. If it still gave me headaches and fatigue, she said, we would try something else.
And then I got the letter.
The letter informed me that she was being replaced by Dr. S, some guy I’d never heard of. I was immediately anxious because I’ve had so many specialists—most of them male—over the years who have brushed me off. I’m anxious in general when seeing a new specialist, but the thought of losing Dr. M and having to start over with a stranger was terrifying. Still, I tried to be brave about it.
I scheduled one last appointment with Dr. M, where she gave me a cortisone shot in my right big toe and explained that she thought I had bone spurs there and in my other big joint in my foot. She said I might possibly have RA and osteoarthritis. And she urged me to give SSZ another shot, even though I asked if I could try another DMARD.
She instructed me to schedule a followup with the new guy for my toe. Cortisone shots don’t always work, and she really wanted me to see a podiatrist if my toe continued to be painful. It was so stiff and hurt so much, I could barely bend it. I couldn’t put weight on it at all and basically had to walk on the ball of my foot—which of course aggravated the pain in my other joints.
I couldn’t schedule my followup yet because the office didn’t know Dr. S’s schedule. This kind of irritated me, but I talked myself down and told myself to give him a chance. I was supposed to call the office to schedule it in a few weeks, but I got super busy with book stuff and it was summer. I always have very minimal pain in the summer, plus the cortisone shot helped and my toe was better. Plus, if I’m going to be honest, I was still super anxious about seeing the new guy. As summer wound down, though, I knew it was time to get back to my health and bite the bullet. So I did it. I was super proud of myself.
In the weeks that passed while I waited for my appointment, my arthritis started flaring. I felt fatigued every day. My joint pain increased. I’d stopped taking the SSZ again because the headaches and other side effects far outweighed the benefits, though it did help a little so I knew we were on the right track. I’d talked to other spoonies with similar diagnoses who’d recommended some DMARDs, so I knew for sure I wanted to try something else.
On the morning of the appointment, I got up early. I was anxious the night before so I didn’t sleep well, but I did sleep. I ate a tiny breakfast even though my nerves were shot. I treated myself to a coffee from Dunkin Donuts. I showered, dressed up—which is special because I’ve mostly been wearing shorts or leggings—and did my makeup. I made a huge effort to make myself feel good. And, I’ll be honest: I also went to great lengths to look like a responsible patient.
Though I’m ashamed to admit it, I’ve been mistreated and accused of drug seeking so many times, I often dress up when I go to the doctor’s—unless it’s someone who is familiar with me and someone I trust. Then I break out the sweats but still rock the makeup. 😉 I want to stress here that I know people who struggle with substance abuse are patients, too—patients who deserve medical care and kindness and respect. So many doctors make assumptions about chronic pain patients, too, which often makes it difficult for us to get those same things that we also deserve. No matter what the patient’s experience, they are a person who should be treated like a person. It’s a messy, outrageous issue that calls for an entire blog post of its own.
I brought a notebook to takes notes in and my agenda so that I could schedule my next appointment. I gave myself a pep talk and even wrangled Mike into coming with me for support, because just his mere presence eases my anxiety. Those blue eyes and the warmth and kindness that he radiates are 100%-natural Ativan, you guys. We arrived a few minutes early. I smoked a cigarette to further calm my nerves. Then we went in.
I checked in as usual and then waited a little longer than normal to get into an exam room. Or maybe it just felt longer because I was so anxious. I’m not sure. Dr. M’s medical assistant was the same woman, which was a huge relief. She took my weight, pulse, and blood pressure, as always. We went over my medications and I let her know that the SSZ wasn’t working out so I’d stopped it. I admitted I was nervous about meeting Dr. S but she assured me that he was very nice.
And he was. He was soft spoken and very gentle during his physical exam. But he completely ignored everything that was in my chart, everything that Dr. M had told me. He brushed aside my questions. He insisted that I couldn’t possibly have arthritis because my blood work is negative. He told me that ERA would also show up in blood work. When I asked him questions and explained that Dr. M had told me otherwise, he brushed me off. He told me that I probably have fibromyalgia—something I’ve heard a thousand times from other specialists who either couldn’t figure out what was wrong or didn’t want to listen. When I explained—patiently—that I’ve been determined negative for fibromyalgia several times because I do not have the tender pressure points, he brushed me off.
I know several people who have fibromyalgia, who have told me that their experiences are completely different from mine. They have muscular and nerve pain, not joint pain. I have joint pain, not muscular or nerve pain. And when I tried Neurontin, a medication for fibromyalgia, I had an extremely adverse reaction to it. I asked Dr. S if fibromyalgia affects your joints, and he gave me a completely hedge-y answer.
He also kept asking about my Tramadol prescription. He asked me like three times where it came from. (My primary care doctor prescribes it, and it is a low dose—only 100mg at bedtime.) Dr. S kept pressing me to consider a pain management clinic.
If the word fibromyalgia turns me off, pain management clinic really makes me tense. I’m sure they help a lot of people, just like I know fibromyalgia is a valid chronic pain illness of its own. But I do not want hard painkillers because they are only a temporary solution to my pain. Plus, to be totally honest, they hit me too hard. I can’t function on them. I’ve only ever wanted a DMARD because they are a long-term treatment for my arthritis. I’ve literally never walked into a doctor’s office and asked for pain medication. NEVER. Because not only do too many doctors automatically assume that’s what chronic pain patients are looking for, but because it’s an automatic death sentence if you have a chronic pain illness and want to be taken seriously. In fact, I’ve asked to be taken off both Percocet and dilaudid because I did not like how they made me feel. It scared me, for example, how quickly my oral dilaudid dose stopped working and how I had to increase the dose literally the second time I took it to the prescribed two tablets a day—when one had worked fine the night before. I told my PAC at the time that I just wanted to go back to Tramadol.
But at that point in the visit, I couldn’t articulate any of this to Dr. S. I just sort of froze. Tears were at bay and it was all I could do to not start sobbing in the middle of the exam room. Panic closed in around me and I could barely breathe.
Dr. S said something about running blood work one last time, but that I can’t possibly have arthritis and it’s probably fibromyalgia. He told me that he didn’t want me to take SSZ anymore, that I didn’t need those medications. And he again recommended a pain management clinic.
I couldn’t get out of there fast enough.
Tears were rolling down my cheeks as I hurried out of the office. Running down the stairs, I focused on sucking down the rest of my iced coffee because it helped hold the tears in. By the time I hit the parking lot, though, I ran out of coffee and was sobbing. I was walking so fast, my body so pumped with flight adrenaline, that I couldn’t even feel my normal joint pain—and Mike could barely catch up. I tried really hard to keep it together, but I could barely get the words out to ask for a cigarette. As I lit it, I completely broke down. Mascara lines down my face and everything.
Hello, full blown panic attack.
Once it was over, this weird calm numbness washed over me. I’ve never experienced that before. It would be super cool if panic attacks could always end that way. I focused on helping a much-loved family member with her own doctor appointment. In a way, it was kind of good that we had back to back appointments in separate towns. In my numb state, I was calm enough to be there for her and it also took my mind off things.
But of course, it didn’t last.
Wave after wave of anxiety hit me once Mike and I got home, even though I’d taken pain medicine, which always helps relax me in both body and mind. It didn’t this time. I’d had a headache all day because I was nervous, but it intensified as the day went on. I’m pretty sure it was a mixed tension migraine because by 10pm, I was nauseous and had light sensitivity, plus my neck and shoulders hurt. Even though I tried not to, I kept bursting into tears, which of course made the throbbing pain in my head worse. And my joint pain was also sassy.
Between that and my mind racing, still trying to process everything, I didn’t sleep. I felt completely lost and even though I didn’t want to give up, couldn’t see any other option. I’ve exhausted every resource. I’ve seen every specialist possible. I’ve literally tried everything.
I spent most of today in a numb stupor. Mostly out of fatigue but also because I couldn’t wrap my head around it. Mostly I focused on helping my family, which also ended up being a huge help to me because I couldn’t wallow.
By later this afternoon, though, I started to feel incredulous. Indignant. Completely fucking pissed. I realized that I deserve better. That, just because Dr. S is a doctor, I don’t have to take his word as gospel. And it is not at all okay that within minutes he undid everything Dr. M did for me—everything I’ve worked for over the last decade. I’d really started to make progress with Dr. M and DMARDs were helping me get my life back. How dare he waltz in and take that away from me.
I decided that I wasn’t going to let him.
As I drove to pick up Mike from work, I realized that I needed to go to bat for myself. I was not going to let this doctor make me feel this way. He might be a great doctor, but he clearly wasn’t the right doctor for me. I decided, as soon as I pulled into the parking lot of Mike’s job, I was going to call the office and complain. Make my voice heard. Insist that I start seeing one of the other rheumatologists in the practice. Make them understand that it was not okay for him to treat me like that.
I was so proud of myself. More and more lately I am rediscovering my voice—and using it to advocate for myself. Not rudely, but loudly. Strong. Steady. Calmly. I was so excited when I slid into a parking spot. I grabbed my phone and speed dialed the office number. It rang and their normal announcements began.
“You’ve reached the offices of Dr. C, Dr. P, and Dr. M. The office is now closed. Please listen carefully as our menu options have changed…”
I felt my heart sink. I’ve never felt so deflated so fast. It wasn’t even 4pm yet, and their office hours have always been 8am to 5pm, Monday through Friday. It felt like someone’s sick joke.
I’m still angry, but I’m also exhausted. These last couple weeks—and especially the last couple of days—have drained me physically, emotionally, and mentally. I’m so grateful that the weekend is here, that I can unplug from social media and just relax. Cleanse. Give myself love.
And then, first thing Monday, I’m making that phone call again.