Summer Flare Makes Me Feel Fine

Photo by Erik-Jan Leusink on Unsplash

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

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

via GIPHY

Still, a few good things happened yesterday:

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

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

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

Why It’s So Hard to Ask

In 2016, I finally got my anxiety and depression under control by participating in trauma therapy for my PTSD. In November, that all went away. Every day brings a new lineup of surreal, horrific headlines. New policies take aim at me, people I love, and people I’ve never met but feel for nonetheless. Hate crimes are on the rise and I worry constantly for friends and strangers alike. I’ve been having panic attacks, nightmares, and just feel horribly anxious in general.

It’s trauma all over again.

I’ve been saying for weeks that I might need to have my prescription for Ativan refilled. Over a year ago, I said goodbye to all psychiatric medication because antidepressants don’t play well with my system. I also stopped taking Ativan because I didn’t need it; meditation, self-care, and getting enough sleep were working for me.

Yesterday I decided I was finally going to ask for an Ativan refill. I have a lot of anxiety surrounding asking for medicines because it’s been harder and harder to get refills for my pain medicine. The war on prescription drugs has made casualties out of patients who rely on them—people who follow the rules and safety guidelines.

It took a lot for me to ask. I felt a panic attack coming on from the second I left my house. It didn’t help that I finally lost my ongoing battle with the narrow walls in my driveway and gouged my car on my way out. Sigh. Then I drove right past my doctor’s office and had to turn around, which made me a few minutes late. My anxiety ramped up with each passing second. I decided not to ask.

After discussing my IBS and UCTD, though, my doctor asked if there was anything else he could do for me. He’s new to the practice and I switched to him from the APRN I’d been seeing. I really liked him after my first appointment; he’d been attentive and kind. Taking a deep breath, I told myself to just do it. It was okay to ask, I told myself. There’s no shame in asking for something I need.

“Okay. Um. I’ve been having a lot of trouble with anxiety lately, and I was wondering if I could refill my Ativan.”

There. I’d done it. I felt immensely proud of myself. Even if I didn’t need it, at least I could keep it in my purse. It was there just for reassurance. I could make it through any panic attacks while continuing my regimen of meditation, relaxation, and regular unplugging from social media.

“Ativan isn’t a good anti-anxiety medication to start off with,” my doctor said.

I nodded; I was completely open to trying something else if necessary, though I’d thought Ativan was the lightest of its kind. (Turns out Ativan is somewhere in the middle.) But then my doctor switched gears entirely, urging me to check with my rheumatologist about Tramadol and whether it’s the best pain treatment for me.

This confused me, because I’d thought all of my doctors were in agreement that I’d stick to Tramadol as needed because it’s working for me. My rheumatologist had told me that in bad weather, I’d still have flareups, so Tramadol and Advil on those days were okay. But my doctor was talking as if he wanted me to stop Tramadol completely.

I also felt like he was brushing off my anxiety, because he suddenly said he’d be back in a few minutes. I started to panic, because not only was I not getting an Ativan refill, but it also looked like I was losing Tramadol. Again.

Plaquenil, Prednisone, Tramadol, and Advil are the medicines that give me quality of life. They’re the difference between being bedridden, wracked with pain, and actually getting out and living. When it’s a constant fight to keep the medications you need in order to have a good life, it can be emotionally crippling when someone threatens to take them away. There is nothing I fear more than my pain forcing me back into bed. I don’t want to go back to needing my husband to dress me every day. I would prefer to have Tramadol on hand when the weather gets nasty and my joint pain flares so that I can continue living.

I’m tired of being brushed off or treated as if I’m doing something wrong when I ask for medicine—especially when I hadn’t even asked him for Tramadol. He’d refilled my prescription the last time I saw him and I still have plenty left because I’m not taking it every day anymore.

I pulled myself together, hoping that he’d come back soon so I could just get the hell out of there and do my cry thing. When he came back, he brought samples of an IBS medication. He also told me that he would refill the Ativan but he was also prescribing me an anxiety medication called Buspirone that I had to take twice a day.

“What is that?” I asked warily.

If you’re new to my blog, you might not know that before I got treatment from a trauma-certified therapist, my previous mental healthcare practitioners had loaded me up with various psychiatric medications over the years. Every single time, I had awful side effects from them. It didn’t matter which class they were from, how “tried and true” they were, or how low the dosage. These medications simply make my anxiety and depression worse. I avoid them like the damned plague. (However, they do help lots of people. They just don’t work for my particular condition or body chemistry.)

“It’s an anxiety medication,” he said.

“Yes, but…” I took a deep breath. I really didn’t want to get into my history—my anxiety was already through the roof—but I needed to explain. “Okay. Look. I was sexually assaulted. But I didn’t get the right kind of help at first. I saw lots of different practitioners whose solutions involved just piling antidepressants on me. And I always get very bad side effects from them.”

My hands shook and tears rolled down my cheeks.

“And then I started seeing a trauma-certified therapist, who helped me so much. I got off all the meds and I even stopped taking Ativan. It’s just…” I swallowed hard. “This is going to sound silly, but my anxiety now is coming from everything going on. With the healthcare act…”

He nodded. “Definitely. I understand.”

I exhaled. “Maybe I should just avoid both of these medicines altogether. I’m just very, very wary of them—though I never had any trouble with Ativan.”

“Here’s what I’m going to do,” he said. “I’ll take off the Buspirone and refill the Ativan, but I don’t want you taking it all the time.”

I shook my head. “Oh, no—I understand.” Benzodiazepenes can be highly addictive, and can even be fatal. It’s super important to follow dosage exactly. (Not that it’s never important to follow dosage, but I’m sure you know what I mean.)

“I’m also going to refill your Tramadol, but you need to talk to your rheumatologist and see if he thinks it’s best. I’ll see you in June and we can stop the Tramadol.”

My head spinning, I held up a finger. “I don’t need the Tramadol refill yet,” I said. “If I were to take one every day, I still have about two weeks’ worth left. Can I just call you when I’m ready?”

“Yes,” he said. “I will refill it once more, but you need to talk to your rheumatologist.”

He offered me water and told me I could stay in the exam room for a few minutes to collect myself. He was very kind, but I felt mortified. The panic attack I’d been avoiding all day had basically sideswiped me in front of my doctor—which made me worry that I looked like a hot mess. Anxiety is a liar, so of course I started worrying that it looked like I’d just faked the crying so I could get the medicine. I didn’t want to blubber, dammit. I wanted to be able to calmly discuss my needs. I wanted to be able to discuss my history of trauma and bad experiences with psych meds without panicking, without tears and numb hands.

I scheduled my followup, then went to pick up my prescriptions. Amongst the Ativan and other things was the Buspirone that I’d thought we’d agreed to leave for now. I realize I don’t have to take it, but now I’m worrying that if I don’t, he’ll think I’m just making stuff up.

Today I looked it up. It acts on neurons and serotonin the same way antidepressants do. It’s clear that it’s not a good fit for me. I really don’t want to even try it, because other than the world being on fire, I’m actually in a really good place. Once again, my problem isn’t chemical—it’s trauma.

Last night I had another panic attack. I took an Ativan and, 20 or so minutes later, was calm. I watched The Shining. The tension in my neck was gone. I slept without nightmares.

Of course I still have to practice self-care. I still need to unplug, keep firm work hours, treat myself to good sleep hygiene, etc. I may even need to schedule an appointment with my therapist, although last I knew she was only working one day a week at the practice and that was difficult to coordinate because we only have one car (which Mike primarily uses because he works full-time outside of the home).

You can do everything right and still need help, and that’s totally okay.

Even though asking for Ativan was one of the harder things I’ve done, I’m really glad I did.

This Is What Withdrawal Feels Like

via Unsplash

It’s an established fact that I don’t get along with medication that affects my brain chemistry. Zoloft? Neurontin? Abilify? Nope, nope, nope—all poison to my sensitive system. I’ve learned that the hard way. For the past year and a half, I’ve avoided them completely—except for Tramadol, my main weapon for treating my UCTD. I often forget that Tramadol affects your serotonin levels, though.

After I had the flu, I stopped taking Tramadol. The Plaquenil and Prednisone were doing their job, and my pain was down to a 3 or 4 out of 10. I figured I’d be better off coming off the Tramadol. Less is more, after all. Besides, my doctor’s office has been acting weird and it looks like they want me off it anyway.

I thought nothing of stopping it. After all, I’ve taken it on and off for years and I’ve never had any problems. At first, I didn’t notice anything odd. I still had residual fatigue from the stupid flu, and things have been crazy so I thought my anxiety was just life being life-y. Then I woke up one morning feeling awful—unable to focus, out of my skin anxious, heavily depressed, completely unmotivated, and exhausted.

I tried to push through it, but the feeling didn’t lift. I felt physically and mentally weighed down, and again confined myself to the couch, bingewatching Grey’s Anatomy rather than working. At first I tried to tell myself it was still just leftover flu, but it felt more chemical, like when I came off Wellbutrin and Abilify back in 2015. I also had stomach pains that made me double over, and alternating constipation and diarrhea.

Plaquenil gives me diarrhea if I take it too soon after eating and it’s made my brain fog worse from the very beginning, so I started wondering if this was just a new development. I Googled Plaquenil and depression, and found lots of forums full of people discussing the possibility of depression as a side effect. If it’s on the internet, it must be true, so of course I panicked.

I called my rheumatologist’s office to confirm and see what he wanted me to do. His assistant called me back and told me that Plaquenil doesn’t usually cause depression, but that I could stop it and see if anything changed. (She also said it could be my Fibromyalgia, which confused me because I don’t have Fibromyalgia. Apparently it’s in my chart, along with the UCTD, which really pisses me off because I have zero Fibro symptoms and it’s been decided several times, by several doctors, that I don’t fit the bill for Fibro. Every single time doctors don’t know what’s going on with me, they just blame it on Fibro. This erases me, it erases actual Fibro patients, and you know what? Don’t get me started because this is a whole other blog post.)

I didn’t really want to stop Plaquenil because at this point it’s doing most of the heavy lifting (I started tapering off Prednisone in February). Like I said to my rheumatologist’s assistant, I don’t want to end up bedridden again. She said she understood, suggested that I stop it for a couple weeks and see, then let me go. I really didn’t want to stop it, though, and I think in the back of my mind I knew I was missing something. I took my regular doses that day.

That evening, I moved and my bad hip cracked, kicking off some fun pain. I took 50mg of Tramadol and, a little while later, my pain was less intense and I also felt fine mentally. Then it dawned on me.

I’m supposed to take 50mg of Tramadol twice a day, along with my twice daily Plaquenil. But I’d stopped taking it because the Plaquenil was doing so well for me. My symptoms weren’t Plaquenil side effects—they were Tramadol withdrawal symptoms.

I’ve been on a regular dose of Tramadol for a long time now. Before that, I was being stubborn and only taking it when the pain got unbearable—but that wasn’t working well because Tramadol works better when you’re taking it regularly. In the past, I didn’t have trouble any time I stopped taking it because I hadn’t been taking regular doses. Now, though, my body is used to its twice daily dose, and stopping it suddenly—especially because of the sudden drop in serotonin—threw me way off.

I’d have to ask my doctor to confirm, but it makes perfect sense… especially given my sensitivity to serotonin and norepinephrine (and what happened the last time I came off a SSRI/SNRI without weaning). Of course, I sort of don’t have a doctor at the moment. (I sent in a letter complaining about the APRN I was seeing and requesting to see the MD, but I never heard back. When I called a week later to check in, they blew me off and told me the office manager would be in touch. I still haven’t heard anything.) I started trying to wean myself off by cutting my dose to 25mg three times a day, but I still feel like hell so I think it’s safer to just continue the 50mg twice a day until I can see someone who will help me.

I want to strongly state here that I still think painkillers are a safe treatment option for chronic pain patients. I still think Tramadol was a good choice for me, because other painkillers are very strong and make me sleepy, so yeah. Despite my mistrust of SSRIs/SNRIs, I’m very grateful for Tramadol because for a long time it made the difference between functioning and not. There were too many days that my pain was so disabling, I couldn’t get out of bed or dress myself, but there were also many days that Tramadol helped me push through the pain to have some kind of quality of life. Until a better chronic pain treatment is developed, I will remain an advocate for opioids and opiates because, when used safely, they are life for people with chronic pain.

Life.

However, I have very complicated feelings about medications that affect my brain chemistry, and I kind of have the heebie-jeebies knowing that I need help in getting off a medication that basically saved my life. I’d also kind of like to know that, should I need pain medicine again, I won’t have to jump through hoops. I don’t deserve to be chained to my bed because my local and federal government would rather slam down on doctors and patients instead of helping treat patients with substance abuse disorders. I don’t think it’s fair or effective to demonize painkillers, vilify people struggling with substance abuse, and erase chronic pain patients.

But that’s also a whole other post.

I didn’t get the chance to call my doctor’s office yesterday, and my entire state is shut down today because of the blizzard, so for now I’m just going to keep taking the proper dose of Tramadol without trying to come off it by myself.

This has been another episode of I Just Can’t Win Lately, brought to you by My System is Stupid Sensitive.

Always a Liar

via Unsplash

At the end of December, as my joint pain started to improve, I started having debilitating neck and lower back pain. I knew it wasn’t my UCTD, but still tried to let the Prednisone and Tramadol take care of it. They didn’t touch it. I couldn’t sleep or work, so I mentioned it to the APRN I see at my primary doctor’s office during my followup with her for my Tramadol refill.

I told her that I’d been taking Advil for it, which helped a little, but I wasn’t sure how much I could safely take. Her response? “Just don’t take too much.”

“Yes, but… how much is too much?”

“Just don’t take too much. The Prednisone will help it,” she insisted.

“I’ve been on Prednisone for a month. This is a new issue.”

“The Prednisone will help it.”

A week later, my joint pain continued to improve while my neck and lower back continued to be debilitatingly painful. Since the APRN had refused to offer me any real advice or treatment, and I wouldn’t be seeing my rheumatologist for another two weeks, I tried ice, heat, more Advil, rest. It didn’t improve. On a Wednesday night, the pain got so bad I couldn’t even focus on the TV show that I was trying to watch.

I decided to go to the emergency room—which apparently was a mistake.

This morning, during my followup with my APRN for my monthly Tramadol refill, she asked if I’m seeing any other doctors. Confused, I said, “Just my rheumatologist,” which she should’ve already known.

“Are you getting any other prescriptions?” she asked.

Still very confused, I replied with my usual list: Prednisone, Plaquenil and, recently, Flexeril from my rheumatologist (I’ll get to that in a moment).

“You got a narcotic,” she said.

I’d honestly forgotten about the ER visit. During my followup with my rheumatologist, I told him how the APRN had brushed me off, how the ER had flat out asked me what I wanted them to do for me, and asked him about Flexeril. My rheumatologist wrote me a prescription for it and, within less than two weeks, my neck and lower back were back to normal.

I told the APRN that yes, I’d been to the ER, and yes, they’d prescribed me Vicodin, which I didn’t want.

“Then why did you fill it?” she asked.

“I’m sorry,” I said, “but have I done something wrong? If you remember, I came in here to see you and asked you about my neck and back, and you just told me not to take too much Advil. So yes, I went to the ER.”

I did what I had to do so that I could get some relief.

As usual, she brushed me off, speaking as if I hadn’t said anything. She again started lecturing me, saying that I can’t take Tramadol and Vicodin together.

“I didn’t,” I said, “and the ER doctor knew my current medications and said that it was okay.” I also told her that my rheumatologist prescribed me Flexeril and that worked, that it was all I’d wanted all along.

She then lectured me about dependence on Tramadol, how I can’t go to the ER, and can’t get anymore prescriptions, or she won’t refill Tramadol for me anymore.

“I’ve been taking Tramadol for my arthritis for years,” I told her, “and I’ve never had any trouble with it, nor do I have any history of substance abuse.”

Ignoring that, she started talking to me about Tylenol and Advil. Even though she could have looked in my chart to see all of the various medicines and treatments I’ve tried over the past decade, I explained to her again that OTC pain relievers and NSAIDs don’t help. She then started talking about a new NSAID with an antacid, and how my insurance doesn’t cover it, but next time I’m going to try it.

She also interrogated me about why I waited so long to come in for a refill. I called a week and a half ago for an appointment and today was the earliest they could give me. How is that my fault?

It seemed like she wants to take me off Tramadol, which has long been a happy medium for me. It doesn’t completely take away my joint pain, but it helps enough so that I can function (unless I’m in a flareup). I’ve tried multiple OTC and prescription NSAIDs over the years, all of which she could see in my chart. None of them have worked, which is why I started taking Tramadol.

I was really confused and once again felt like she wasn’t listening to me. Since I haven’t slept these past couple of nights, I just didn’t have it in me to explain once again everything she already knows, things that we’ve already discussed multiple times.

On my way out, I went the wrong way. I’ve been in so many doctors’ offices lately, my exhausted pea brain is directionally challenged. She condescendingly pointed me in the right direction, as if I wasn’t already mortified enough. I stopped at the front desk to make my followup appointment for next month, rather than calling in to schedule it later. Before I left, the receptionist stopped me and asked me to sign a paper.

Again confused, I sat down and read through the three-page document—an agreement about narcotics, with a long list of restrictions. I can’t even fill my prescription at a different pharmacy. What happens if we were to move, or if I wanted to fill it at Stop & Shop while I get groceries?

I know all of this is coming from the new regulations—and of course lawmakers didn’t consider chronic illness patients—but her attitude toward me has always been dismissive. Today I just felt completely dehumanized; she treated me like a liar, like a criminal.

Yet every time my husband has seen her and expressed his health issues and concerns, she’s been attentive and quick to work out a treatment plan for him.

Every

single

time.

I’m glad Mike’s finally getting things taken care of, but previously he hadn’t been to a doctor in over 15 years. I have a long history of having an autoimmune disease and documentation of seeing specialists and trying different treatments. When I see her, my concerns are dismissed; she flat out told me that I have “too much going on,” so she doesn’t “want to touch me.” Yet Mike has even more health issues than I do, and she told him that she would take care of everything.

I’m tired of being treated like a liar and a criminal. I’m tired of being dehumanized, having my pain and concerns dismissed over and over. I’m tired of sexism, ableism, and ageism in the healthcare field. I’m tired of playing this game.

I don’t have it in me anymore. I really, really don’t.

The worst part is, I can’t even just switch doctors, try to find someone who will listen to me and actually read my chart. The APRN told me that she got a letter saying that I’d filled a prescription for Vicodin, and told me that if I see any other doctors or get any other prescriptions, she’ll get another letter.

Which means that, if I change doctors, it’ll just look bad on my end; I’ll just look like I actually am drug-seeking.

No matter what I do, no matter how pro-active I am in my health, I’ll always just be a liar.

Review: Give Yourself the “Guts” to Fight (+ Giveaway!)

Schwartz Bioresearch Probiotic
Schwartz Bioresearch Probiotic

Those of you who have been with me for the past 10 years know I’ve been fighting a pesky autoimmune disease that is maybe Lupus. One of my main symptoms is debilitating joint pain, which I combat with a wide toolbox. My greatest ally has been the painkiller Tramadol, which knocks 10/10 pain down to a more bearable 7 or 8. The only downside to taking an opioid like Tramadol is that it can mess with your GI system.

One of my other main concerns about my autoimmune disease is my immune system itself. Since my immune system is confused and attacking my body, it gets even more confused when I come down with something like the common cold. Most people don’t even miss work when they’re sick, but I get knocked on my ass for several days and it almost always leads to a flareup of my autoimmune disease. This means lots of joint pain on top of an already annoying cold, so I try really hard not to get sick in the first place.

I’ve wanted to try a probiotic for a while now, but honestly the ones I’ve seen in stores are expensive. We’re talking like $15 to $20, which is way out of budget when you’re already struggling. I’d basically given up on trying one, until Schwartz Bioresearch contacted me and asked if I’d like to review one of their supplements and host a giveaway. Um, yes please!

Lucky for me, they offer a probiotic. They sent me a free bottle in exchange for my honest review. I don’t get paid for this review, but I do have some goodies for you!

The package itself came fast. Maybe it was expedited since I’m a reviewer, but it arrived three business days after I agreed to participate. I also really liked the packaging itself. The box was super easy to open; I didn’t have to fight with any glue like you do with most things on the market these days. My hands and wrists really appreciated that. However, the plastic around the cap was a pain to get open. It wasn’t perforated like most OTC medicine bottles are, and I don’t have the strength to rip it myself. So I gave up and used scissors. Still, no big deal! The peel-off protective thingy underneath the cap came off super easily.

Speaking of packaging, they were also kind enough to print a coupon for my next order right on the bottle. I thought that was really cool because I’m a busy author and I can easily lose a paper coupon in my various piles of papers, but there’s no way I can lose a whole bottle.

Being a spoonie, I take a lot of pills. Anyone who knows me knows that I hate taking pills. Any time I have to add another one to my pillbox, part of me dies inside. But these capsules go down easy with just a sip of water, and they play nice with my other medication. (Have you ever had a lump of meds get stuck in your throat? It’s not a fun thing.)

From what I understand, it can take a few weeks to get the full effect of probiotics. I take mine twice a day, as recommended on the bottle, and I’ve been taking them for over two weeks now. When I first started them—and sorry if this is TMI—I was not at all regular, thanks to my Tramadol. I try to eat a balanced diet with lots of fiber, but that’s not always enough. I really do think the probiotic supplement has made a difference; I’m still not as regular as I’d like to be, but I no longer have awful stomach pains, and I now “go” much more frequently than before. I consider that a win.

I also think they had something to do with keeping me germ-free while Mike died for weeks with a super cold. The poor guy never gets sick, but this thing knocked him on his ass. He missed like five days of work, which if you know him is unbelievable. And it was a mean cold, complete with stomach bug -esque symptoms and bronchitis. I never got sick, though. Now, I’m sure that washing our hands and not kissing had a lot to do with with that, but I also sleep next to the guy and I have a crap immune system. I once got the flu twice in a row, and I’m autoimmune. He’s finally feeling better, and I never caught it. Another win!

The bottle I received is a month’s supply, so I’ll know even better when the month is over whether it’s made a difference for me. The retail price is $18.90*, so it’s comparable to similar products in stores. Plus there’s that coupon. 😉

Even better, Schwartz Bioresearch offered a $100 Amazon gift card giveaway to my readers! Who can’t use a $100 Amazon gift card? I know I can think of a few things I’d like! All you have to do is enter your email address below (they’ll also send you a free smoothie recipe book).

Giveaway November 2016

So there you have it—my first time using a probiotic. I think I’ve finally got the “guts” to fight like the spoonie warrior I am!

Save 10% off on all Schwartz Bioresearch products! Use code 10SAVE17 on their website, http://schwartzbioresearch.com. My contact has assured me this code will not expire and can be used again and again, so start shopping now!

Have you ever tried a probiotic? What did you think of it? Let me know in the comments!


Disclaimer: This post is sponsored by Schwartz Bioresearch. I received a free bottle of their probiotic supplement in exchange for my honest review. My opinion is my own.


ED, 11/21/2016: My original post linked to the wrong product; the product I received to review was the 40 Billion CFU probiotic, not the 20 Billion. I’ve updated the link and retail price. Also, Schwarzt Bioresearch’s social media manager read my post and very kindly sent me their turmeric and curcumin blend for my joint pain! I’ll be reviewing that product soon.

The Lump On My Chest

via Unsplash
via Unsplash

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.

Breaking Through the Pain

via Unsplash
via Unsplash

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.