Today I’ve been on Plaquenil for exactly one year. While Plaquenil and Prednisone worked really well for my joint pain, both gave me some unfavorable side effects. Prednisone made my blood sugar skyrocket and threw some of my other labs off, so I had to wean off it. Plaquenil did okay on its own, but for some reason the GI side effects—diarrhea, heartburn—just keep getting worse. I had to come down to one pill a day instead of two.
I’m feeling it.
My rheumatologist said that if I flare, she’ll put me back on Prednisone, so there’s a good chance I’ll be starting it soon. I want to feel better—and I really want my hands and hips back—but I’m scared of the high blood pressure, freaky blood sugar, and weight gain. So I may have been holding off on making that phone call.
It feels like I can’t win.
This may be TMI, but Plaquenil can be an outright asshole. At first it seemed like it wasn’t getting along with dairy, but now it seems to give me diarrhea randomly. Heartburn, too. You’d think those are minor side effects, but trust me, they can quickly ruin your day. And your night.
Still, I look at posts and pictures from a year ago, and I know these two medications have saved me, side effects be damned. It comes down to a choice: would I rather debilitating joint pain and fatigue, or random bouts of diarrhea and heartburn, paired with high blood pressure, blood sugar spikes and crashes, and hot flashes?
I’m trying to hang in there until my rheumatology appointment; playing phone tag is not my idea of fun, and I get shitty cell service in my apartment, which makes it even worse. I’d rather speak to her in person and go over our options. (She’s wonderful on the phone, too, but connecting is always a challenge.)
My appointment is almost two weeks away, though, so I’m gonna have to call.
It doesn’t help that I’m facing losing my health insurance, but that’s a whole other post. The gist of it is, my state changed its income regulations this year and we are now just a couple hundred dollars over the requirement. Yet we can’t afford a monthly premium and we sure as hell can’t afford appointments and prescriptions out of pocket. A friend suggested I can appeal the denial, but we weren’t denied—I’m stuck in an Access Health CT website loop. (If you live in my state, you know what I mean.) So that’s another phone call I’m dreading but have to make.
It’ll work out, though. In the meantime it’s all about managing my pain and anxiety.
On the plus side, if I start Prednisone again, I’ll be able to take notes for my classes. (My hands have not been digging this whole pen holding thing.) I’ll also be able to type faster.
And did I mention that my beautiful Christmas cactus is now a year old? It’s now so full and there are several vibrant blooms (with dozens more budding). A month ago, it didn’t seem like it was going to bloom at all. A year ago, I wasn’t sure I could keep it alive. (I’m all right with succulents, but this one came from a pharmacy and I didn’t know how it would do.)
There’s a metaphor in here about patience and faith. I think.
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.
I’ve been taking Plaquenil and Prednisone for my UCTD for over four months now. For a little while, I was having some moderate anxiety: fatigue, feeling frozen, heaviness in my legs. I thought it might be Plaquenil (or even Tramadol withdrawal), but I haven’t had any of those symptoms in a while and I’m still taking Plaquenil (with Tramadol as needed). I think I might’ve freaked myself out about it, too, and it sort of became this brutal cycle. But my anxiety is relatively tame and my meds are working—all good things.
The temperatures and barometric pressure have been all over the place lately, as usual in New England. It snowed in March and we’ve been getting rain this month, along with random hot days. This has been killing me, but the difference now is—thanks to Plaquenil and Prednisone—I just take some Advil and Tramadol, and it’s enough. Usually, anyway.
Sometimes it’s not.
I’ve been having lots of trouble with my wrists and hands lately. For the past decade, I’ve struggled with severe pain in all of the joints in my hands, but this is a different ball game entirely. For quite some time now, I’ve been getting numbness in my ring and little fingers (which I’ve been ignoring, haha). In the past few weeks, though, it’s progressed to burning, tingling, and icy-weird-ness in both of my wrists and all throughout my hands. It sounds like carpal tunnel, which could easily be caused by the inflammation in my tendons.
I kinda always knew this would happen, eventually. I mean, I am an author, and before that I was a web designer. There are few hours of the day that I’m not hacking away at the keyboard. I guess I just thought I was years away from having to worry about it. Then again, the possibility was mentioned to me a decade ago, so I guess it would’ve been years away then. 😂
The only thing that really seems to help are my wrist braces, which I usually try to wear while using the computer for long periods of time. For the longest time, I was sleeping in them and that seemed to help, but I’d stopped because my wrists weren’t hurting anymore. Now I’m back to wearing them again, and I’m even bringing them everywhere with me because I need them almost all the time. It’s not a big deal, per se, but it’s kind of odd—to me, anyway—how quickly this has progressed. I had the numbness for like a year or so and then bam! Tingling and burning.
I’ve been meaning to ask my rheumatologist, but my appointment keeps getting bumped back for one reason or another. I see him this week, though, so we’ll see what he says.
Aside from weather-related flareups and possible CTS, I’m doing okay. I’ve been super tired lately, so I’m wondering if my B12, D, or iron levels are low again—spoiler alert: they usually are—but even that’s manageable with cat naps, afternoon teas, and my old fallback Emergen-C.
I’m looking forward to the weeks ahead as the weather continues to warm and I’m able to get out and do more. Last week I went to the zoo with Sandy and the kids; a few weeks before that, on a random nice winter day, I walked a mile.
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 am positive that Plaquenil is causing my depression.
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 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.
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.
Last Thursday, I was not in a good place. I felt utterly mortified, wavering between defeat and anger. I knew that I needed to find another primary care provider, but the way my APRN said “If you see another doctor or get another prescription, I’ll get another letter and I won’t prescribe the Tramadol anymore” made me feel like if I transferred to another practice, I’d still just end up looking bad. I hadn’t actually done anything wrong, but I felt like I had, and I felt like I didn’t have any other choice.
Her words kept replaying in my head: “I’ll get another letter,” as if she was trying to threaten me. Had she really been concerned about my being dependent on painkillers, she would have asked me questions about my use, trying to get to the bottom of her concerns and helping her patient. But healthcare practitioners are not trained in substance abuse, save for a small segment. Nor are they trained in pain management. So, when faced with chronic pain patients like me or patients who are struggling with substance abuse, they don’t know what to do with us. And when they’re prejudiced by ageism, sexism, and ableism like my APRN—who made up her mind about me the very moment she saw my youthful, feminine face—they can’t be bothered at all.
And hey, maybe she really does mean well, but I have a hard time believing it when she consistently dismisses all of my concerns during our appointments, yet is attentive, involved, and jumps into action whenever she sees my husband. I’ve sat in on his appointments. I’ve seen the differences in treatment with my own eyes. The other day, while checking out, the elderly woman behind me praised the same APRN who’d just all but flat out accused me of lying. At this point, I can only conclude that she treats me the way she does because of how I look: like an able-bodied teen girl.
So yes, I call it like I see it: ageism, sexism, and ableism. And I’m so sick of it, I could breathe fire.
I didn’t feel as if I could have such a productive conversation with my APRN. She has been dismissive of me since my first appointment with her, and even when I repeat my questions or point out facts, she completely ignores me. Whereas, with my rheumatologist, even when he disagreed that I have an autoimmune disease, he was still willing to listen, to take the time to answer my questions. I’ve never gotten that impression from my APRN.
Besides, I needed to state facts and lay things out, which would take longer than a five-minute conversation with the front end staff. They’re very busy, and likely wouldn’t have time to sit on the phone with me while I rattle off dates and details, nor could I be sure that the message would be relayed properly. I also felt super anxious, and wasn’t sure that I could speak without getting upset all over again.
I felt stuck. Even if I transferred to another doctor in the same health network, I would just look like the drug shopping liar she accused me of being. I wasn’t sure that the next doctor would be willing to refill my prescription and, even though at this point the Plaquenil is starting to work, I do still need pain relief. For my own peace of mind, I also need to know that, should the pain get bad again, I can get the medicine I need in order to get through my days and nights.
“I’ll get another letter,” she’d told me. While venting to Sandy, it dawned on me: she would get another letter, because I was going to send one to her.
Even though I wrote it in the security of my own home, I felt my anxiety mounting with each word. As patients, we’re conditioned to go with whatever the doctor tells us because they have the medical degree, not us. As chronic pain patients, we’re even more inclined to roll with it because we’re grateful to be treated at all—especially women, who are often stigmatized as being dramatic or drug-seeking. Autoimmune diseases are documented as being difficult to diagnose and treat; what works for one patient often won’t work for another with the exact same condition, because every person’s immune system is different. When you’re fighting an autoimmune disease, you’re fighting your own body, a complex and adaptive machine that scientists and doctors still don’t completely understand. So, when you’re not even very familiar with your own disease, it’s absolutely daunting to stand up to a healthcare practitioner and say “You’re wrong”—even when they are very clearly wrong, as my APRN was.
In my three-page letter, I stated dates that I’d been seen along with the unprofessional things that she’s said to me. I explained that I had come to her first, that because she’d brushed me off, I’d had no choice but to go to the ER when it hadn’t improved a week later. I ended my letter invoking my right as a patient to see the office MD from here on out.
After I put my letter in the mailbox, my anxiety only increased and I kept questioning myself, telling myself that I’d made a mistake, that I should just rip it up and deal with things the way they were. I always feel bad for standing up for myself. Maybe, if I’d just outright said to her “It’s not okay for you to joke about my age and condition” from the very beginning, or “I would like to try Flexeril” when she brushed off my Advil questions, it wouldn’t have come to me laying it all out in a three-page letter.
Women are conditioned to believe that if we speak up for ourselves, we’re inconveniencing someone. We’re accused of complaining, of being a bitch. But I had to advocate for myself and my healthcare, because if I don’t, no one else will.
So, I mailed out my letter. Despite my damned phone anxiety, I plan on calling in a few days to follow up and make sure that they got it. Then I’ll make sure my next appointment is with the MD who replaced my retired doctor, and hopefully s/he will be much more attentive, compassionate, and knowledgeable. I’ve seen dozens of doctors over the last decade, and so few of them are. It’s a damned shame, because it impedes healthcare and also ruins patients’ faith in doctors. I know it sure as hell has killed mine.
I’m getting better at advocating for myself, though. Even if I’m too shocked to defend myself in person, I can always call later when my anxiety calms, or write a letter when my anger fades. Speaking of, I also wrote a letter of complaint to the hospital about the way the ER attending and some of the staff treated me. In the past year, since getting my voice back, I’ve become less afraid to speak up for myself and others. It’s never easy, but it’s always worth it.
Turns out that the neck and back pain are probably stress related, aggravated by new pillows, cold weather, and working at the computer. I asked the APRN about it at my primary doctor’s office and she brushed me off, as usual. When it got really bad—I mean, brought me to tears bad—I went to the ER. They brushed me off too, until they saw my x-rays. Although there was no fracture or anything, the doctor could tell that I was in a lot of pain because of how ramrod straight my neck was. He said they usually see that in people with whiplash; normally, the spine is slightly curved in the neck. He sent me away with Vicodin, which makes me vomit. All I wanted was Flexeril. When I asked him if I could cut the Vicodin pills in half to avoid them irritating my stomach, he actually laughed in my face and told me that I needed to go home and chill out.
Nice, right? But this is nothing new.
A friend and then a relative gave me some Flexeril to get me through, and it worked like magic (as long as I actually relaxed, too*). During my followup with my rheumatologist, I told him that I know it’s not really okay to share prescriptions, but I just wanted to make sure it was okay to take Flexeril with my other medications. He told me it was okay, and suggested I take it at night because it can make me drowsy. He also told me to not drive on it. I don’t remember him saying he was going to write me a prescription for it, but when I got to the pharmacy, it was there.
So few doctors have actually listened to me over the past decade, never mind tried to treat me, that I actually cried in the middle of the pharmacy aisle. I’ve never been so happy to take medicine.
During my appointment, we discussed how I’m doing on Plaquenil. My joint pain is much, much better, and he said this is around the time when Plaquenil starts to work. Since I can’t stay on Prednisone for very long, I need to come off of it. He asked me what I thought about that.
I just want to note how much that means to me, that he includes me in the conversation and treatment plan. I initially wasn’t sure about him, since he seemed to be brushing me off, but ever since our phone conversation, he’s shown me that he really cares. I think a lot of doctors do, but they can sometimes forget what it’s like to be on the other side—the patient’s side.
“Well,” I said, “I’m kind of nervous about coming off the Prednisone, because I don’t want the pain to come back.” I’ll be the first to tell you that my biggest fear is my pain. Not the 5/10 pain, but the 10/10, can’t move, can’t function, feel like I’m dying pain.
He nodded, then explained to me that he isn’t just taking me off of it. We’ll be slowly tapering down, to find the minimum dose that I can stay on while the Plaquenil starts working.
In short: I won’t be just coming off it. The pain won’t be rushing right back in like it has in the past.
I’m now on 7.5mg of Prednisone a day (previously I was on 10mg). My prescription is 5mg pills; I take one and a half every morning. The brain fog struggle is real, because I had to ask him to explain to me three times how I’m supposed to make 7.5mg out of 5mg pills. But he patiently explained each time, never got annoyed with me, and when I apologized for being so slow, he gently told me that his job is to clarify for me.
I really can’t express how wonderful this man is.
A decade of chronic illness and doctor merry-go-round has made me very skeptical about doctors. I’ve been mistreated so many times, it’s my knee-jerk reaction to mistrust them. But I’m glad that I shared my concerns with him and expressed how much I need someone to figure this out with me.
Sometimes, change needs to come from within.
Though I was nervous about tapering down, I’ve been on the lower dose for a week now and I feel great. Plaquenil is doing its job! Don’t get me wrong. I can still aggravate my joints by overdoing it. (I do.) I can still have bad pain days. (I have.) It’s still possible that I can have another flareup. It’s still possible that my Undifferentiated Connective Tissue Disease is pre-Lupus. I still very much fear my pain.
But it’s also starting to feel possible to get my life back.
For the first time in a decade, I feel hopeful again.
We Need Your Help
I’m feeling better, but I’m still not able to return to the regular workforce. On top of that, my husband recently had surgery that will keep him out of work for three weeks at the minimum, six at the most. He doesn’t have a lot of sick time available and we’re already struggling. We really appreciate any help you can give us.
*Ha! Considering I’m an indie author and have to work my ass off for every dollar I make, I’m not very good at just resting. Still, the more I stress about money and my production schedule, the more my neck and lower back hurt. I’ve also been stressing about my health insurance and all of the insane things happening in my country, which I’m sure hasn’t helped. I’ve had to actively work at keeping my stress levels down by using coping methods, relaxation techniques, and unplugging. And buckling down to write a new book.
If you’ve been around for any period of time, you know I’m all about goals rather than resolutions. Setting actionable, achievable, and accountable goals is far more productive than making promises.
Usually, I keep my goals for the year down to a short list. Recently I heard about Level 10 Life, which is basically just your life, broken down into 10 areas. You’re supposed to set 10 goals for each area—100 in total—with the objective of eventually fulfilling all areas of your life. I don’t know about you, but I don’t think it’s possible to ever reach 100% fulfillment; there’s no such thing as perfection. Plus, I think 100 goals is a bit overwhelming.
Goals are supposed to be challenging yet within reach. If you set the bar too high, you’ll set yourself up for failure.
A few weeks ago, I found a wheel of life pin that I loved. It focused on eight areas of life rather than 10, with one goal in each area. The objective is to achieve more balance in your life; once you reach a certain goal, you set a new one in that area.
I tried making the wheel of life and failed epically. After several attempts, I realized I didn’t need a Pinterest-worthy craft to help me set goals for 2017. I sat down with my white board and several dry erase markers, and got busy. This list is the result.
My Goals for 2017
Get curtains for all windows. Though it has its quirks, I love our little country apartment, and hope to stay here until we’re ready to start a family. (That’s a whole other blog post, so stay tuned.) To make our place look even more home-y, I’d like to get curtains for each window. Fortunately—in this case, anyway—there aren’t many windows; our apartment was an attic in a former life. I’m starting with the kitchen, with the front door (which naturally has the oddest measurements ever, and I can’t seem to find anything). Challenge accepted!
Get arrow, hummingbird, and spade tattoos. 2013 was the year I got married, and probably one of the best years of my life. But 2014 and 2015 were easily two of the worst years of my life. I lost one of my best friends in 2014 and in 2015, I lost myself. PTSD finally caught up with me and I completely bottomed out. But in 2016, I got better.
There’s a quote that really spoke to me in 2015-2016:
An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means that it’s going to launch you into something great.
I don’t know where it originated, but it really resonated with me—especially regarding my PTSD. I truly cannot explain how strong I feel. I’ve got my voice and my magic back, and I feel more me than I’ve ever felt. This is why I want to get an arrow on my ribs, on my right side—to remind me of how I shot forward in 2016. Something simple and delicate (my ribs do swell, after all, so tattooing that area might be a bit… challenging). Something like this, in this same spot:
I think this design is the one I’ll go with.
I’ve long wanted to get twin hummingbirds on my collarbones, for my Popi. He loved watching the birds at the lake, and the “hummers” were his favorites—especially the ruby throated hummingbird. Growing up, I always felt enveloped by magic whenever I could look fast enough to see them. Popi had hawk eyes and saw everything; he was the magic.
I like the general placement of the hummingbirds in the above pin, but I don’t love the design. My plan is to have Jay—the artist who did my hydrangeas and tiger lilies—design and tattoo my hummingbirds. I love his style and I know he’ll help me come up with something I love.
Finally, I want to get a spade in memory of one of my best friends, Sean. He loved spades—I’m pretty sure it was an old nickname, though I have to check with his girlfriend to make 100% sure—and had one tattooed on his forearm. I’ve been racking my brain, trying to figure out the perfect tattoo to remember him by. It suddenly dawned on me the other day that I should get a spade. I’ll probably add it to the sleeve I’m working on, on my left arm.
I’d like to get something for my Biz Noni, too, but for one, I’ll be lucky if I can afford three tattoos in one year. Plus, I kind of already got something for her: my hydrangeas around my Fievel. She was still alive back then, but my dad was talking about transplanting her hydrangeas in the yard. I thought about how amazing it was, that those hydrangeas stubbornly continued to bloom year after year after year—even though she couldn’t physically get outside to nurture them anymore. It reminded me of her; she was “up there” in age, but remembered everything and had survived much. I got the hydrangeas tattooed as a reminder that I can survive, too, even in the toughest of circumstances.
Pay off all debt and past due bills. I won’t bore you with the details, but between my student loan, some credit cards that I opened to help us out, our bills, and my creative team from Booktrope, I’ve racked up a teensy bit of debt. I say “teensy” because I was panicking but when I added it all up, I realized it’s really not that bad. Some people are thousands of dollars in debt; I’m only about $5K in. Still, I’d really like to make it go away—especially the damned student loan that’s been hanging over my head for years.
Long story short, that student loan is from a half semester that I had to withdraw from due to health issues. It was too late to withdraw without penalty, so I got stuck with the bill. I’ve been trying to pay that thing off for almost 10 years now.
My accumulated debt grew to a ginormous monster in my head. I’d wake up in the middle of the night, heart pounding, terrified I’d go to jail for delinquency. That’s totally not the case, but anxiety lies. When I actually broke it down on paper, though, it suddenly became a teeny baby monster. Now that I’m writing for Textbroker and regaining momentum in my career, it doesn’t seem completely impossible to overcome, either.
They say the best way to pay off debt is to make regular payments on everything while going really hard at one particular bill. I haven’t quite decided which one to tackle first, though.
Finish all currently open series. 2016 was all about regaining some lost momentum; 2017 is going to be all about closing boxes.
Right now, I have three unfinished series: the Comes in Threes, Not Just Any Love, and South of Forever series. While the Not Just Any Love series is actually just two companion standalones (Just One More Minute and the forthcoming Char/Amarie novel), the Comes in Threes series has been in limbo for almost four years.
I’ll be releasing the final South of Forever book soon, and then my plan is to get back to Quinn, Tara, and everyone else from Crazy Comes in Threes. I’ll be rewriting CCIT; I won’t be changing anything about the story, but I’ll be making some structural changes—that way I can pull off my master scheme. I’m super excited about what I have in store. More news on that soon!
Go on one date every month. Thanks to the holidays, health issues, and financial stress, Mike and I haven’t been able to spend much time together lately. Our hot dates have recently consisted of doctors’ appointments and him helping me put pants on. So romantic. 🙄 Not!
Money is beyond tight, but I’d really like to do something every month—even if it’s just a movie night in. We’re both always busy, but I make sure we eat dinner together (unless he’s working), with no tech at the table so we’re really focusing on each other. Still, I’d like to do actual dates.
Last month, my Noni got us a gift certificate to our favorite sushi place, so we went to lunch after my rheumatology appointment. (Note to self: blog about that ASAP.) It was nice to get out and spend time together, and we have enough left on the gift certificate to do it again. Little things like that keep our relationship strong.
Host at least one family dinner. Due to my arthritis, it’s really hard for me to pull off gatherings at our place. Not only is it physically difficult, but it also takes a major toll on my energy. The last time we hosted anything was Mike’s birthday party—in October. It was so nice to have both sides of our family all together, but I paid for it dearly in the days after. I always do.
Originally, we really wanted to host weekly Sunday dinners, but that’s just not possible. I’m slowly adjusting to my limitations, which means not pushing myself and accepting things for what they are. Still, I’d like to have at least one Sunday dinner this year; they were a huge part of Mike’s family when he was growing up, and it’s really important to him that the tradition continues.
My plan is to give Plaquenil and Prednisone some more time and, when the weather gets warmer, set a date.
Find a treatment that brings pain down to a 4/10. I’m hoping Plaquenil is The One. I’ve accepted that I’ll probably never have a zero pain level again, but if my new normal could be a 4/10, that would be great. At that level, the pain is tolerable; once it gets to five or even six, it’s debilitating. Honestly, I’ll even take a five at this point; last Sunday, it got all the way down to a five, and I felt amazing. It’s been an eight lately, which is still better than a nine or 10.
But four is about my normal level when I’m not in a flareup. If Plaquenil can decrease the flareups and their severity, I’ll be happy.
I’d also really like a diagnosis more definitive than “it might be Lupus” or “it’s definitely enthesitis-related arthritis.” Right now, my chart has Undifferentiated Connective Tissue Disease (UCTD) as my diagnosis, which translates to “undiagnosed autoimmune disease.” It means there’s definitely something inflammatory and autoimmune going on, but my labs are inconclusive. There are two camps in rheumatology: one that relies more on symptoms to diagnose, and the other that relies more on labs. My rheumatologist falls into the latter, and so did my former rheumatologist. There’s nothing wrong with that, but for my own closure, I’d really like to know the name of the disease that has completely and irrevocably changed my life.
I may never get that. I may have to practice accepting that. Time will tell.
Write “writing through trauma” book as a blog series. I’d like to tell my story—and help others write through theirs. Writing has long been a huge part of my life. I’ve written my way through every major event, be it in a journal or weaving my pain into a novel. The most important writing I’ve ever done, though, were my trauma stories.
I’d like to teach others how to write through their pain. Eventually, I’d even like to lead workshops for local organizations who help sexual assault survivors, but I’ve got to start small. That, for me, means writing a how to book.
I’ve started several times. I keep getting stuck because I’m not sure how much of my personal story I should share; I don’t want to take away from the advice I’m giving, but I’d also like to show how writing through my own trauma helped me. I’ve decided to take my outline and the roughly 10K words I’ve written, and turn it into a blog series that can be later converted into a book. This way, I can get some reader feedback on it while I’m putting it together.
Stay tuned, because that will be starting very soon.
What are your goals for 2017? Let me know in the comments!
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).
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.
I’m seriously starting to hate Wellbutrin. First it turned my thoughts against me. Now it’s ruining my sleep.
When I first started taking it, it made me laser focused. I could think. I could write again. For about two weeks, I tackled my To Do list with a fever. I even commented on it to my therapist, that it was almost too good to be true.
Two weeks ago, after being on Wellbutrin for a couple of months, I lost all concentration. I stopped writing. Disturbing thoughts started popping into my head. They weren’t suicidal thoughts, per se, but they were definitely not mine.
Last night, the nightmares started. I’ve always had odd dreams on Wellbutrin. They were quirky and charming. Now they’re bloody and terrifying.
It all reminds me too much of when I was on Viibryd.
I still can’t quite talk about the hellish experience I had. But I know when it’s time to get out of Dodge.
I have an appointment with my APRN for psych meds on Thursday. He has razor sharp instincts when it comes to these meds, but I want off. I won’t wean without supervision. I know how dangerous that can be. And I’m sure that there’s a drug out there that will work for me. I’ve just had enough for now.
Maybe I’m a little traumatized. Maybe I’m being too extreme. All I know is, Viibryd almost killed me. I won’t make the same mistake again.