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?
Late Monday morning I finally gathered up the nerve to call my rheumatologist’s office. I was super anxious about it because, in the past, I’d asked to see another rheumatologist in the practice and been denied. Apparently they have a policy that patients can’t switch doctors.
I’ve never heard of any policy like this, but no matter how hard I pushed at the time, the office staff refused to let me see the other rheumatologist—even though Dr. M had suggested I see a psychiatrist and sent me on my way. Even though my weekend was very calm and relaxing, by Sunday night I was a ball of nerves again. What if they wouldn’t let me switch? What would I do then?
It wasn’t until I got to my best friend’s house that I was able to call. Sometimes, you just need a buddy. We sat in her office and, while she worked on something for a client, I got on the phone.
“Hi,” I said when one of the receptionists picked up. “I need to speak to someone who I can leave a complaint with…”
I explained everything that happened last Thursday. Calmly. Even though my hands were shaking. The woman I spoke with was very nice. She listened. She didn’t interrupt me. When I finished, though, she explained that it’s against their office policy to let patients switch doctors.
It felt like the floor had suddenly dropped open underneath me and I’d plummeted through. Still, I took a sip of ice water and a deep breath. I was in control, and I wasn’t taking no for an answer.
I reiterated my concerns, that it just was not okay for Dr. S to come in and change everything when I’d been doing so well. Even if sulfasalazine was giving me nasty side effects, it had been helping—which was what Dr. M was hoping. Seeing the results told us that she’d been right, that I have enthesitis related arthritis. We just had to try another DMARD.
I explained that I had really wanted this addressed before it gets much colder, since that’s when I really have trouble with my arthritis. (And I’m already having a really hard time with the cooler temps, but I guess that’s another blog post.) She repeated their policy and explained that, since it’s not really a complaint and “more a difference of opinion,” they wouldn’t ordinarily have me switch. Plus, Dr. C is not currently taking new patients.
Again, I felt the ground giving way beneath me.
But, she said, it just so happens that a new rheumatologist is joining the practice at the end of the month—and she takes my insurance. (Which is state insurance, and boy, do patients on state insurance get treated differently. But that’s also a post for later.) The receptionist told me that she can talk with Dr. S and she’s sure that he will okay the switch. In the meantime, she asked, “You are going to do your blood work, right?”
“Yes,” I said. “Of course.”
She asked if I wanted her to wait to talk to Dr. S, and I said no—I’d rather her speak to him right away. So she was going to send him a message and then the office would call me once they got the new doctor’s schedule. I thanked her and, mostly satisfied, hung up with her.
When I got off the phone, Sandy—who’d been sitting there the whole time—told me that she was really proud of me. “You handled that conversation really well.”
Unfortunately, it just comes with the territory. For the last near decade, I’ve had to learn to advocate for myself. Doctors and their offices are busy, at best. At worst, they don’t want to listen for whatever reason. I’ve been steamrolled by so-called professionals many times—people telling me there’s nothing wrong with me or it’s “just” this or that. It’s hard not to feel beaten down. Throughout my early life, I got spoiled with a pediatrician who usually knew the answers and always listened to my parents and me. I could trust that he would help me feel better, or at least take the time to try.
I could get into all of the things wrong with the medical system—especially when it comes to being a chronic illness patient and a woman—but I honestly don’t have the spoons right now. I’ve spent the last nine years feeling invisible in so many ways. I don’t want to be erased. This is my quality of life, and no one else is going to fight for it.
I’m the only one who can.
I have a young family member who is in the DCF system and placed with another family member. He is special needs and, through DCF, has an APRN social worker who oversees all of his medical and occupational needs. She keeps track of everything and assists his foster parent with setting up appointments and getting different issues resolved. The other day I was thinking about all of this, and how helpful it would be if all people with chronic illnesses were able to have an APRN like that.
I know my body really well, but I don’t have all the knowledge that an APRN does. And since they understand the medical system as well as various illnesses, they can help you accomplish quite a bit.
I don’t know what it would take to get something like this rolling in the U.S. Hell, maybe it already exists. But it sure would be amazing.
Anyway, I’m moving forward. I’m nervous because, for the next month, I don’t exactly have a rheumatologist. I can’t call the office with complaints about my knees, hips, and elbows and expect any results (since Dr. S insisted that I can’t possibly have arthritis, that I don’t need “those medications,” and that I “should be grateful”). It makes me both angry and uneasy. It’s not fair.
But for me and so many others, this is the way it is. Not only do we fight our bodies, but we also fight for our rights as patients. And I get that rheumatologists have polarized opinions on seronegative arthritis. There are countless medical journal articles and research about both opinions. Dr. M was strictly of the “arthritis has to show up in blood work” camp—until I refused to stop coming to appointments and kept reiterating my symptoms and issues. She finally decided to treat me based on my symptoms rather than blood work.
It took me almost ten years to find someone who would.
I can’t afford to spend anymore time working with another doctor who doesn’t believe in seronegative arthritis. Dr. S was very nice and is very much entitled to his opinion. But this is my life, and I refuse to continue being miserable in order to hold his or anyone else’s hand through ten more years of jumping through hoops.
For quite some time, I had a hard and fast rule: no social media on weekends. Over time I started bending it. After all, my life doesn’t stop on Saturdays and Sundays, and I enjoy sharing it (especially on Twitter). I still try to hop on as little as possible, using my time to just recharge. But this weekend, I needed a cold turkey cleanse.
I completely unplugged from both Twitter and Facebook—a feat that required gargantuan effort. Actually, Friday night I hopped on several times “just to see.” What I was trying to see, I don’t exactly know. Truthfully it was my way of getting another fix. I didn’t cut myself off from Instagram and Pinterest, but I used them only minimally. Mostly I relaxed.
On Saturday, I slept in until 2:30pm. My friends with children are glaring so hard at me right now, but in my defense I hadn’t slept Thursday night, and I’ve been fighting off flareup fatigue while juggling anxiety attacks. I desperately needed the rest—even if I woke up somewhat panicked because more than half the day was already gone.
Sometimes, you just need quiet time.
Because the last couple of weeks had been full of panic attacks, I really needed to calm my mind. Thankfully, my old therapist E gave me some really great tools. I used eucalyptus essential oil to combat my three-day tension migraine. If you put some on your chest, the back of your neck, your forehead, and temples, it really helps sooth the pain.
I also binged The Fosters. If you haven’t caught this show, you need to. Going in, I thought it was going to be a lighthearted family show. And for the most part, it is; no matter what happens, you know the Adams-Foster family goes to sleep with love in their hearts. But damn, do they tackle some heavy stuff. They do it in such a way, though, that you can’t help but feel good (even after they’ve played with your emotions and made you cry). I love the healthy relationships and choices they portray. No matter how hard things get, there’s always a chance for these characters to move forward. And the fact that this show is so pro-LGBT+ makes it even more of a winner.
In between episodes, Mike and I started Luke Cage, which is like a billion times better than those other Marvel shows. *cough* Daredevil *cough* Jessica Jones *cough* I’m pretty sure I’m the only person who doesn’t dig those shows. I tried really hard to like Daredevil, but I couldn’t even get through one episode of Jessica Jones. However, Luke Cage is kick-ass. Maybe it’s because Mike Colter is oh-so-damn handsome. Or maybe it just took some time for the team behind these shows to really hit their stride. But the acting, pace, story, and characters are just phenomenal. We’ve only been able to watch one episode a night, and I’m dying for more.
Side note: I recognized Colter from Ringer and The Following right away. I was super excited, because I loved him on those shows. He’s such an awesome actor. And did I mention how gorgeous he is? 😍
We also went grocery shopping, which ended up a bit more of an adventure than intended because we ran out of money before we could finish. Starving artist problems, sigh. I’m so looking forward to the day when we don’t have to worry about these things. But we have enough to get us through the next couple of weeks, and that’s all that matters.
On Sunday, I spent the entire day binging The Fosters and working on a project I’d thought I’d completely abandoned. Back in 2007 when I was in college, I took a crafts class as an elective. It was a difficult course because it was very hands on, and that was around the time when my arthritis first started. I had to get a doctor’s note to skip certain projects because they put too much strain on my wrists, and it broke my heart. However, there was one activity that I really fell in love with: embroidery.
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Even after the semester ended, I continued playing with it, learning new stitches and working at my own pace. Though it is hard on my hands, I’ve found that using a hoop really helps. Frequent breaks, too. 😉 I’d started a project in 2012-ish, recreating leaves placemats that I’d seen in the Kohl’s store I worked in at the time. They weren’t even that pretty, and the store had jacked the price way up. I thought to myself, I can totally make those, and started… but never finished.
In fact, when I picked it back up again this weekend, I realized I’d made even less progress than I’d thought. I was able to finish my first one, though, and nearly completed a second. By the time I went to bed last night, I was so relaxed, I dropped off to sleep almost right away. And I didn’t even need the eucalyptus oil!
This weekend I also got to spend a little much needed time with my sister-in-law. We jammed out to this song on the radio, which I’d heard before but hadn’t caught the artist. Now I know and Kiiara is fantastic writing music. I just love how chill this song is, and her voice is angelic.
This weekend I learned something really cool about myself: No matter how hard things get, I’ll always work through them and move forward. In the past, my anxiety and depression have felt suffocating, like they would go on forever and ever. While my anxiety was pretty bad these last couple weeks, the key difference this time around was that I knew eventually it would pass—especially if I kept using my self-care tools. This time last year, I was so lost, but in the past twelve months I’ve grown in leaps and bounds. I’m a completely different person. I’m still me at my core, but I’m also stronger. More confident. Empowered, not ashamed.
In the quiet of my calm mind this weekend, I sat reflecting on all of this. It feels so good to be in this place, to be this version of me. Even though I still have my challenges to work though, I’ll always keep moving forward.
And when I need a break, I’ll keep making myself unplug, for fuck’s sake. 😉
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.
All of my persistence paid off—I got my shot today. However, after this afternoon’s visit, I’m even more confused and concerned about my illness.
Excuse me for a minute while I haul out my giant binder with all my medical records…
Last summer when my rheumatologist diagnosed me with Reactive Arthritis (ReA), she mentioned that it could still be Rheumatoid Arthritis (RA). Because I’m seronegative, though—meaning my rheumatoid factor, sed rate, double stranded DNA, and HLA-B27 blood work is always either borderline or in the normal range—she decided to treat me as if I have ReA.
Side note: I need to start tracking my blood work levels; even though they’re always in the normal or borderline range, I need to chart them to see if they’re increasing at all—even if in small amounts.
This afternoon, while my rheumatologist prepped me for my cortisone injection, she said she felt bone spurs in both the small joint of my big toe, as well as in the large joint (that giant joint right under your big toe). I’ve been having trouble with both of these joints, so it makes sense.
While I was chasing doctors trying to get my right hip taken care of, scan results showed bone spurs in that joint, too. At the time, I was seeing an orthopedic. There was talk of surgery, and then all of a sudden I was told I wasn’t a candidate.
Nothing was ever resolved. I simply got used to the severe pain. And I got myself a cane.
Around the same time, x-rays showed a sclerotic lesion, AKA “bone island,” on my left ankle. I had a bone scan done to make sure it wasn’t anything cancerous and everything came back normal. According to the Department of Radiology at the University of Washington, “bone reacts to its environment in two ways — either by removing some of itself or by creating more of itself.” Sclerotic lesions occur when whatever is happening to the bone in question is occurring over a long period of time (as opposed to rapidly). “If the process is slower growing, then the bone may have time to mount an offense and try to form a sclerotic area around the offender.”
What might be eating away at my ankle and causing my bones to armor up? I can safely rule out cancer and injury to my ankle. UW’s radiology article lists several causes, two of which are autoimmune and inflammatory diseases.
The puzzle is starting to come together.
All of the signs are pointing toward something degenerative. My rheumatologist mentioned something about osteoarthritis (OA) while she all but ran out of the exam room. (She’s leaving the practice at the end of this month, so at this point she’s just done.) I asked how that was possible, since I’m 27 and definitely not a runner. She basically brushed me off and suggested that I might have OA as well as ReA. I don’t think this is the case.
My gut has been telling me over the last decade that my arthritis is degenerative (like RA). One of my biggest concerns has been my joints deteriorating as my autoimmune disease progresses. I’ve been questioning whether I actually have ReA since last year, but even more so as I chatted with other ReA patients in a Facebook group. My symptoms are similar to theirs, but there are a lot of inconsistencies.
For one, most of the ReA patients could connect the onset of their arthritis with or right after an infection of some sort. I had mono before I got sick, but that was a whole year prior. There’s very little research on mono and ReA, but most articles cite strep, bacterial intestinal infections, and STDs as causes of ReA. Not mono.
Since I just got the cortisone injection in my toe today and I’ll be transitioning to a new rheumatologist at the practice, there isn’t too much I can do about this puzzle right now. My rheumatologist insisted that if the toe doesn’t get better, to follow up with a podiatrist in the meantime. I don’t love the idea, but my best friend made a great point: a podiatrist specializes in all of the tiny bones of the foot. If I end up needing surgery, he will be the one to do it. He’ll also be able to give me fast relief. While it’s true that a podiatrist can’t treat all of my other aching joints, I can’t screw around when it comes to my feet.
I need that specialist—especially if this is RA and it continues to progress.
She’s right, of course. I’m just frustrated, and tired of seeing nineteen doctors every time another joint goes. I guess I just thought I was done playing the doctor hop game; I thought once I had a diagnosis, I’d just have to do regular followups and keep taking my SSZ like a good girl.
But of course it’s not that simple.
My rheumatologist said the shot could take a couple of weeks to work, and to go easy on my toe. No flip flops—or at least, not cheap ones that lack support. I’m to wear sneakers and take it easy.
Because I have chronic pain and it majorly impacts my sleep, etc, I get up anywhere between 9am and 11am. 9am is my goal, especially because I try to stick to my 9-5 work day rule. But, for example, if I participate in a Kidney Walk on a Sunday, I’ll let myself sleep in on Monday to recover. (Walking even a mile really aggravates my arthritis, which in turn sucks the energy right out of me.)
I usually eat breakfast immediately, since I’m hypoglycemic and my blood sugar is often low in the morning. It’s either a light breakfast of fresh fruit and a protein-filled breakfast bar, or a delicious egg and cheese sandwich on an English muffin. Or cereal. (Don’t judge me.)
While I’m munching, I get started for the day. This is usually something like checking Facebook and Twitter, or writing a blog post—something I can do without being fully awake. As soon as I finish eating, I take my morning meds, which are currently a cocktail of: sulfasalazine (my DMARD), a wallop of vitamin D (since I’m low at the moment), B complex (mostly for its energy properties), a multivitamin, and an OTC allergy medicine (usually the store brand of Claritin or Zyrtec, since I have to switch off every season). Totally exciting so far, right?
The rest of the day sort of depends. Every week, I write up a master To Do list and then break it down day to day. If I don’t have any doctor appointments, I’ll brew up some coffee and then roll up my sleeves. If I do, I’ll drink my coffee while getting ready and hurry out the door.
Confession time. I’m still trying to get better at the whole writing every day thing. I usually set a word count goal for each day, but I’m lucky if I get there. Often I feel like I need to tackle a bunch of other things before I can get to the fun part. (For example: keyword research or email.) I do really well when I rearrange my day so that I’m writing first thing, so I need to work on this pressure I feel to get everything else done first. After all, I’m a writer. Shouldn’t writing be the most important thing?
I work steadily ’til lunch, going down my checklist. Then I take a break long enough to make whatever I’ve got on hand: grilled cheese, a big salad, or a hamburger/hot dog. I work through lunch, taking bites in between tasks. After lunch, it’s noon meds (more SSZ). And I resume working.
This is usually the part of the day where I shove everything else aside and get those words down. I reread the last couple of lines I wrote the day before or during my last session, then skim through my outline. (Click here for a little peek at how I “outline” my books!) I turn on the music that’s currently inspiring my WIP, and let my fingers glide over the keys. (I write on a MacBook Pro, and its keyboard is the silkiest thing I’ve ever laid hands on.)
I can write between 1,000-2,000 words an hour. The best I ever did was close to 3K in an hour, which was insane. My favorite method for keeping the spark alive between me and my WIP is stopping when I don’t want to. So, since I usually end each chapter on a “moment,” I usually call it a day when I’ve finished a chapter. Each of my chapters are around 3,000-4,000 words, sometimes less; I tend to let the story guide me.
At this point, I’m up against the clock. There might be a couple more things I need to do for the day, or it might be getting too close to dinner time. So I race to get as much as I can done, then force myself to shut down my computer. This is my least favorite part of the day. I have a really hard time letting go, especially if I haven’t completed my list for the day.
I cook dinner—usually from scratch, because A) we’re broke and B) I love cooking. Every so often Mike will surprise me with romantic things like ordering a pizza. We catch up at dinner, talking about our days. After I finish eating, I take my evening meds (more SSZ and my Tramadol). Then we go outside and share a cigarette—I said no judging, remember?—and I go back in and clean up.
7pm or 8pm is my favorite time of day because, unless I have a takeover, I sit down on the couch. It reclines, so I put my feet up and get the pressure off my poor hip. The Tramadol washes over me and I get to stop fighting the pain for the first time in 24 hours. It takes it down to a more bearable 7/10. I read or we watch a movie. (We don’t have cable or even Netflix.)
I try to go to bed before midnight. When I get off schedule—like I did in May, attending to all the fires—everything gets out of whack. I’m naturally a night owl. I have to fight to get back into routine. In May, I was working until and going to bed around 5am. Oops.
Sometimes I still have sleep anxiety, so I always go to bed with a calming video on YouTube and then a chapter or two of a softly spoken audiobook. I’m a light sleeper, but the drone of the fan lulls me right off, and I rarely wake up until my alarm goes off the next morning.
And then it starts again.
What’s your daily routine like? Share with me in the comments below.
Next Friday: My top 5 books and why!
Note: I’ve fallen way behind on this challenge. I’m actually backdating this post and scheduling the rest; I’ve learned that I tend to forget to post for challenges, and scheduling in advance keeps me on track. So I apologize if this post confuses anyone! You can find all of my #LifeBooksWriting posts here.
I knew that stress aggravates my arthritis. In the last nine years, some of my worst flareups occurred during stressful times in my life. Because I also suffer from PTSD, it’s extremely beneficial for me to incorporate relaxation into my daily life. If I don’t, I easily become a messy blob of pain, anxiety, and depression—all of which, of course, feed into each other. So when the news dropped that my publisher is closing its doors, I knew right away that it was time to ramp up my R&R.
After months of skipping my nightly meditation routine and daily yoga, I forced myself to get back into it. I use aromatherapy almost daily—okay, yes, this is actually how I justify my Yankee Candle addiction, shut up—and nightly (with lavender essential oil on my wrists and pulse points on my neck), but ramped that up too. Still, I almost immediately felt the effects of stress on my body.
I have chronic pain. I’ve had Reactive Arthritis (AKA Reiter’s Syndrome) since 2007 (and my rheumatologist tells me it could still be Rheumatoid Arthritis). Mine is enthesitis-related, meaning the inflammation is where my tendons insert into my joints. It’s brutally painful, and I’ve been in a flareup for over a year now (with a brief respite in September/October because of Sulfazine). With the weather all over the place and allergy season under way, my pain was already high. (Hay fever causes inflammation in the body. Just one more reason for me to religiously take my allergy medicine.) But last week something completely new happened to me.
I’d heard of costochondritis from other spoonies, but hadn’t experienced it myself. I do get swelling in my ribs. It’s really only uncomfortable if I wear a “real” bra, which is why I’ve basically been living in Gilligan O’Malley camis for the last couple years. (Praise my lord and savior Target.) I’ve had a rough time with my ReA, so was very thankful that I hadn’t had to deal with anything like costochondritis, because from what I’d heard, it’s pretty nasty. And now I can confirm this from firsthand experience.
Since the news dropped, I’ve had heartburn and nausea on and off. (Thanks anxiety.) Usually drinking 2-3 glasses of ginger ale eases it. At this point I should buy stock in Canada Dry. But last week, as I toweled off after a shower, I noticed that there was a big lump on the right side of my sternum, right under my right collarbone. And it hurt, even if I didn’t touch it.
So of course I ignored it. Or tried to, anyway. As the night wore on, it became more and more painful. It felt like someone was sitting on my chest. Taking Tramadol and massaging it eased it a bit, but even after my heartburn abated, it was still there. I tweeted about it like a good #spoonie, but it was midnight and I didn’t really expect anyone to be on. Because I enjoy torturing myself, I started Googling my symptoms.
After examining a diagram of joints in the sternum, I determined that the swelling was dead on the manubrium—the joint where the first rib and sternum connect. It was definitely costochondtritis.
Unfortunately, there isn’t much you can do for costochondtritis. You basically have to ride it out. You can take anti-inflammatory medication, like an NSAID, but since they don’t usually much help my arthritis, I figured it probably wasn’t worth aggravating my heartburn any further. I did consider going to the ER and begging for a super shot of Prednisone. One of the last times I had a really nasty flareup, the attending in the ER did that for me and it brought the pain down immensely. I was exhausted, though, and didn’t really want to sit in the ER for potentially hours. I decided that if I didn’t feel any better in the morning, I’d go.
Thankfully, the swelling went down and the next day, it was as if nothing had happened. That spot is still tender to the touch, but nowhere near as painful as my hands, wrists, big toe, and hip have been lately. It’s now hardly even a blip on my radar.
In the days since, I’ve taken care to make sure I’m getting enough rest. My sleep schedule is way out of whack lately, as I’ve been staying up late working and combating pain. I’m easing my bedtime back an hour every night. I’ve now graduated to going to bed at 1am rather than 5:30am. I’m also continuing my nighttime yoga routine (mountain pose, standing forward bend, triangle pose, and wide angle standing forward bend). Stress is fun times.
These last few weeks have been miserable. We kicked off the new year without insurance and, of course, I ran out of Sulfazine at the same time. I’d already been having breakthrough pain. Throw in the brutally glacial temperatures that rolled in with January, and the week and a half or so without my medication was hell. Thankfully, I had some Tramadol left, so made due until I was able to get our insurance turned back on.
(Never, ever take health insurance for granted. Ever. Lesson learned.)
I’ve refilled my prescriptions and resumed my regular dosage, but it’ll be some time before it builds up enough in my system again to quell the fire in my body.
Inflammation is the worst.
I’ve got more Tramadol and Tiger Balm to carry me through, but after four months with hardly any pain, I’m having a hard time readjusting. On the first really bad day, there were a lot of tears. The other night, I was so exhausted I collapsed on my couch around 8pm and passed out under my electric blanket.
(Turns out Invader Zim is so much weirder than I’d remembered, but the comfort of the show I loved in my teens was enough to lull me to sleep.)
So I’m writing again, but very slowly. Last year, when I was in remission, I worked my way up to writing at least 3,000 words in an hour. Now I’m lucky if I can churn out 1,000. Even if my wrists and fingers didn’t hurt so much, the rest of the pain throughout my body is enough to blur my focus.
It’s frustrating, to say the least.
But I have learned to appreciate the power of scissors. Almost all packaging defeats me—even Emergen-C packets with their perforated edges. I’m finding that there are few problems a good sharp pair of kitchen scissors can’t solve.
(Emergen-C, by the way, is a wonderful invention. One of the symptoms of my disease is bone deep fatigue—and it’s also a side effect of Sulfazine, sigh. Emergen-C gives me the boost I need that caffeine can’t quite achieve anymore.)
I’ve been taking every day very slowly, but I have to say I’m relieved the weekend is here.
It’s been a long weekend. On one hand, it was kind of nice to laze around completely. (I even let the dishes go for one night.) But as of the new year, our health insurance ended. I missed the deadline. I thought I had more time, and then all of a sudden it was January 1st. (There’s still time to enroll and escape the penalty. The deadline I missed was for continual coverage.) I completely acknowledge that this was my fault. On the 1st, I tried to enroll but the Access Health CT website wasn’t working. (Literally. No matter what I clicked on and which browser I used, it just kept bringing me back to the home page.)
Naturally, I ran out of Sulfazine (the DMARD I take for my arthritis). I have refills available but can’t call them in without insurance. (Honestly, I have no idea how much it costs out of pocket. I’m kind of scared to find out.) Basically, this medication silences the inflammation that causes my joint pain. It’s only been a few days since my last dose, but already I’m in agony. And while I appreciate that, had I been on top of my game, I wouldn’t be in pain, it points to a bigger problem.
I wasn’t supposed to be on Sulfazine much longer, anyway. My rheumatologist said she wanted to take me off it the next time she saw me. She’d hoped that we were dealing with Reactive Arthritis and that the medication would get rid of it. It’s telling that I’m right back in a flareup.
Last night, during a Target run, I stood in the aisle for a long time debating whether to get some Tiger Balm. I haven’t had to use it in months, but something told me to pick some up. I’m glad I did, because tonight I’m miserable even with it slathered on my knees, hip, and lower back.
I do have some Tramadol left (and took one now), so hopefully I’ve got enough in my old bag of tricks to tide me over until I can get our insurance back on. (Rest, hot and/or cold packs, Tiger Balm, Tramadol.) I’d really hoped that Sulfazine would do the trick, but part of me knew otherwise; I had some breakthrough pain late last month and was starting to question the effectiveness of Sulfa. I guess now I know.
I’m sure my rheumatologist will have an action plan. I’ve really come to respect and trust her. Maybe I need Sulfa combined with another DMARD. Or maybe she’ll want to stop Sulfa and try something else. For now, my mission is to take it easy—and get my health insurance back.