This Is What Withdrawal Feels Like

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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.

I’ve Been Sick for 10 Years

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Today marks 10 years since I got sick and didn’t get better. I have a lot of complicated feelings about the whole thing. 10 years ago today I felt a weird tingling and numb sensation radiating from my wrist to my elbow, and shortly after that it turned into joint pain. In the years that followed, each of my joints systematically became affected until I was completely disabled.

It’s been a long, exhausting journey—physically, mentally, and emotionally. I’ve been on Plaquenil and Prednisone for three months now. My disease is now under control; before I came down with the flu, I walked a whole mile—and didn’t pay for it. I walked a little over a quarter of a mile today. My plan was to walk the full mile over to Sandy’s, but she got sneaky and intercepted me. Still, it felt really good to walk—even though my anxiety was being an asshole and I was honest to goodness convinced that I was going to get hit by a car and die the entire time I was walking. 😂

I have Undifferentiated Connective Tissue Disease. Since being diagnosed in December, I’ve done some reading. My disease could go one of three ways: it could go completely into remission, never to return; it could stay UCTD, which would be manageable with my current treatment plan; it could become Lupus, a whole new ball game. Funny enough, I don’t worry so much about it being pre-Lupus anymore or sticking around, because Plaquenil has changed my life and as long as I can keep my health insurance, I’ll be okay. I do worry about losing my health insurance, though, because there’s no way I could afford these medications out of pocket, and no health insurance company would cover me under the Republican’s proposed replacement for the ACA. Without the ACA, I will be disabled again. Period.

Right now, though, I’m extremely grateful for my rheumatologist and the treatment plan he has me on. I’ve had few side effects from Plaquenil, and they’re definitely tolerable compared to debilitating joint pain, fatigue, and my other UCTD symptoms. Illnesses like the flu will trigger flareups, but they fade when I recover. In this moment, I have a happy ending—something I honestly hadn’t dared to hope for.

My plan right now is to keep taking my medication for as long as I can, and fight to keep my health insurance. For me and so many others, the ACA is the difference between life and death; being bedridden and writhing in agony is not living. Lately I’ve been living more than I have in the last 10 years, and I’ll go down swinging to keep it that way.

A Touch of the Flu, a Touch of Depression

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It’s been a full week since I last posted here, which is weird for me because I’m usually a font of word vomit. I managed to come down with another flu virus, though, so I’ve been busy napping. This bout was particularly nasty and, from what I understand, it’s been going around. I didn’t even bother to get swabbed, because the second my eyeballs started hurting and my temp started climbing, I knew.

Still, it’s been rough. For several days, I had muscle, joint, and skin pain. Yes, skin pain. It’s a thing I sometimes experience with my Undifferentiated Connective Tissue Disease, but it’s never a big deal. This? Was hell. I couldn’t move, because every inch of my upper body felt like it’d been badly sunburned. Showering and toweling off after? Hell, I tell you. The muscle and joint pain were nasty, too. On its own, the joint pain would’ve been a 6/10 and the muscle pain a 4/10, but the three together were damned near unbearable.

I decided not to call my doctor because A) Tamiflu only shortens the flu by like two days and B) I kind of currently don’t have a primary care doctor. My doctor’s office has been blowing me off ever since I sent in my letter of complaint, and I honestly didn’t have the energy to talk to them about my concerns and explain my symptoms—especially since they don’t listen in the first place.

I just toughed it out, and I’m still recovering. At this point I just have a runny nose and dry cough, and I’m still easily fatigued. I do feel better, though, so I really can’t complain. However, I’ve also come down with a touch of stupid depression.

It’s not easy for me to admit this. I kind of thought, once I’d worked through my PTSD, that I wouldn’t have to deal with this shit anymore. But there’s been a lot going on in my personal life lately that I haven’t really talked about. I’ve been overwhelmed and dealing with a lot of anxiety, and it’s apparently turned into depression.

Granted, I think anyone in my shoes would feel this way. I’ve been through a lot lately, and things pretty much suck in my country right now. For the past several weeks—months, even—I’ve been in survival mode, reacting as I need to and staying on my feet. It’s not at all surprising that I got the damned flu again. In emergencies, I’m always the one to panic after it’s all over. Today I burst into tears and had to remind myself that Mike is okay, I’m okay, everyone’s okay, we got through it all, we’ll get through everything else.

I guess I just haven’t had the time to process everything.

So while I’m recovering from the stupid flu, I’m also working on processing the past few weeks and the things that I know are to come. I’m also working on easing up on myself; I put a lot of pressure on myself, and tonight I realized it’s time to let it go. Writing has been really hard for me lately. I had a lot of plans for 2017 and the only one dictating what I “need” to do was, well, me. I’m working on clearing my plate a bit and giving myself room to recover, as well as room to just be, and then room to grow.

I’m also working on my author website this week, so if it goes down for a while, don’t worry. I’m not going anywhere.

Sometimes, you just need to pause and practice breathing—and that’s exactly what I’m doing.

Living with an Autoimmune Disease is Weird

If I’ve gotten nothing else out of this whole autoimmune disease gig, it’s that living with one is fucking weird. I have Undifferentiated Connective Tissue Disease (UCTD). Basically, my immune system is confused and is attacking my connective tissues: joints, skin, tendons, etc. My UCTD could be pre-Lupus, pre-RA, or something else entirely. Right now my rheumatologist is treating it as UCTD with Prednisone and Plaquenil.

Many autoimmune diseases are completely invisible. On the outside, I might not look sick—especially on a good day. With makeup, I can mask the fatigue under my eyes. Unless I’m wearing my wrist braces or using my cane, you might not even notice that I’m in pain. I’ve gotten really good at hiding my discomfort (unless it hits that 8/10 level that I just can’t tolerate).

 

Then there are the completely weird-ass symptoms. My main symptoms are joint pain and fatigue, both of which can be debilitating. Thankfully, my new medications have stopped my current flareup. However, I’ve got the flu again, which has aggravated another symptom which is usually no big deal.

You know how when you’ve got really bad sunburn or a burned yourself while cooking? Or, for those of us with tattoos, that feeling after several layers of color? It’s a raw pain on your skin that is aggravated when you touch it or when something—like your clothing—brushes up against it. I get patches of skin that feel burnt, but nothing is there and I haven’t hurt myself or been out in the sun.

Usually, these “patches” are no big deal; they go away in a couple of hours or a day at the most. They’re often super small areas, too, so it’s easy to avoid irritating them and ignore them. With this flu, though, most of my body feels this way. The flu and illnesses in general tend to aggravate my UCTD, but this is completely new to me. Usually it’s the joint pain that gets out of control. I also find it kind of odd that the Plaquenil isn’t suppressing this.

It’s weird symptoms like this that keep autoimmune patients on our toes.

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As if that’s not all bad enough, most of the time our doctors don’t even know what to do with us. I’ve had physicians suggest I see a psychiatrist, ask me what I want them to do for me, flat out tell me there’s nothing they can do… The list goes on. When you have cancer, you see an oncologist; there’s no such thing as an autoimmune disease specialist, which is a damned shame, because there are a lot of us and very few physicians who can effectively diagnose and treat us.

Thankfully, I wound up with Dr. S, who’s been amazing. If he ever leaves the practice, I’m going with him—even if I have to follow him to the North Pole. It’s that hard to find a good doctor who can roll with the punches of an autoimmune disease; doctors don’t like medical mysteries, because they’re not cut and dry. Hell, I don’t like them either.

Autoimmune diseases are just plain weird, and living with them is weird. Still, I keep on trucking, because I’m too stubborn to lie down and quit. I’m not too stubborn, though, to lie down and rest once in a while.


Do you have a rare disease? What are some weird things about it? Let’s commiserate in the comments below. ♥

I’m a Flu Magnet

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I’m 99.9% sure I have the flu again; my eyeballs hurt, I’m exhausted, my skin feels like it’s on fire, my muscles ache in places I didn’t even know I have muscles… I basically slept all day yesterday, went to bed early, and already I’m ready for another nap. I’m totally okay with that.

Apparently this year’s flu shot didn’t include the A strain flus. Plus, because I’m on Plaquenil and Prednisone, my immune system is a bit, well, nonexistent.

I don’t even know how I got it this time. My friends and their baby have it, but I haven’t been near them specifically because I don’t want it. I probably got it when Mike and I went grocery shopping, and he somehow evaded it.

Seriously. Every time I go out in public, I get the damned flu.

On the plus side, our state tax return came in, which means we can afford to both be down and out.

Advocating for Your Chronic Pain Illness

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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.

When my rheumatologist told me, during our first appointment, that I can’t possibly have an autoimmune disease and that I should be grateful it’s “only” Fibromyalgia, I was hurt and furious. I walked out of the office barely holding back tears, and spent the morning intermittently crying and smoking cigarettes. Then, the next morning with my best friend by my side, I called the office to complain. I ended up having a very productive phone conversation with him, and truly felt that he wasn’t bullshitting me. He’d realized he’d been wrong to judge me so quickly, and was willing to help me get my autoimmune disease figured out and under control.

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.

I am worth it.

Always a Liar

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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.

Self-Care for Writing Through Trauma

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Note: This blog post is a raw, unedited chapter from my current work in progress, Writing Through Trauma. Part memoir and part inspiring instruction, Writing Through Trauma aims to help you write your way through difficult events in your life. Click here to join my email list to get notified when I post new chapters.


I’m scared, and overwhelmed, and I can’t fucking think straight—and it’s okay.

I just broke down in tears after 30 minutes of trying to write this post using the built-in speech-to-text software on my Mac with the damned thing not picking up half of what I fucking say. I’d hoped that talking through it would help me focus better, but I ended up completely frustrated.

If that’s not a micro example of some of the side effects of writing through trauma, I don’t know what is.

I’m stressed. Shit is falling apart in my country. I’m scared for myself and my family and friends. My health is a bit better thanks to Prednisone and Plaquenil, but my neck and lower back have been fucked up for weeks and the more stressed I get, the worse they are. I’ve fallen behind on my production schedule. I’m months behind on beta reading for my CP. Every time I try to write fiction, I feel blocked or too brain foggy to focus.

I thought I’d just buckle down today and write the next chapter of Writing Through Trauma that I’d planned—”Why Writing Helps You Through Trauma”—so that, at the very least, I might help someone who’s struggling right now too. But the truth is, sometimes it’s a double-edged sword.

Sometimes writing through trauma brings it all back to the surface and paralyzes you.

Writing has never been my enemy. For almost two decades, I was my own enemy—thanks to trauma. But I could always escape through writing. On the page, I could always be myself and speak my truth.

Right now, my truth is fuckfuckfuckfuckfuck.

My biggest fear is how debilitating my chronic illness is if untreated.

My chronic illness is a trauma. For the first 18 years of my life, I was healthy. I came down with colds, strep, and the flu occasionally, but other than that I was strong. I played softball. I went hiking. I worked. I went to school. I went bowling. Then, suddenly, I came down with mono.

It crippled me. My life came to a screeching halt for months. I only had the strength to move the 100 feet or so from my bed over to the couch. For weeks, my doctor couldn’t figure out what was wrong with me. I had severe throat and joint pain, plus debilitating fatigue and muscle weakness. I felt like I was dying. They tested for strep twice and both times it came back negative. My mom had to push for them to test me for mono. It came back positive. I started Prednisone and Tylenol with codeine, but it took weeks for me to recover. I nearly missed our family vacation to Florida. Even when we came home, I was still relatively weak.

A year later, the joint pain and fatigue came back. This time, it never went away.

It’s an autoimmune disease called Undifferentiated Connective Tissue Disease. It attacks the tendons where they connect into my joints, causing joint pain. It attacks my eyes and mouth, making me perpetually dry-eyed and thirsty. It affects my energy. It impairs my thinking, making my thoughts foggy; it’s hard to think of words, names, and places. UCTD can be pre-Lupus or pre-RA, especially if your disease has changed over the years. Mine has.

With the Affordable Care Act under attack, I face losing my health insurance and therefore my healthcare. I’m finally feeling better for the first time in a decade, thanks to my rheumatologist, Prednisone, and Plaquenil. Without my Medicaid, I cannot afford healthcare. Period. I can’t work outside the home due to my disease; most days, it’s a struggle to work from home. Mike works full-time, but everything he makes barely covers our rent and utilities. His company’s health insurance plans are outrageously expensive and we couldn’t afford them before the ACA was passed.

Mike is now finally dealing with his own health issues and, if they continue to go untreated, he won’t be able to work much longer. All I can think about lately is what will happen to us if—when?—the ACA is dismantled.

A two-month supply of Plaquenil costs about $800 out of pocket. I don’t even make $800 a month. We rely on SNAP for groceries, getting only the bare essentials and cooking everything from scratch—even when I can barely stand.

Whenever the inflammation in my body gets out of control, my joints become too stiff for me to even get out of bed. Never mind the pain. I can’t physically move. I’m utterly helpless, which is downright terrifying for a 28-year-old who was healthy 10 years ago.

Living with a chronic illness is traumatic.

I’ve spent the last 10 years trying to come to terms with my disease. I don’t know what is going to happen as it is. Facing losing the ACA takes away even more control of my life.

Trauma is anything that disrupts your sense of safety and trust in the world—your sense of normal. Anything can be traumatic, and the effects of an event vary from person to person.

With so much on my mind, it gets in the way of writing—especially when I try to write about writing through trauma. It reminds me of how much I struggled when I first began writing my trauma stories.

My therapist Erica told me, in our first session, that the end goal was for me to tell my stories. I had to pick three traumas and write about what happened. Picking three was difficult, considering I’ve been living with multiple traumas for so long, and had just experienced a fresh one.

Bullying. Assault. Rape. Miscarriage. Chronic illness. Unexplained death of a loved one. Forced hospitalization.

Every time I started writing about what happened to me, I’d get overwhelmed with anxiety. Writing about it only seemed to aggravate my anxiety, depression, and flashbacks. I kept having to stop and put it away because I just couldn’t deal.

When that happened, I had to practice self-care.

When writing through your trauma, it’s imperative that you allow yourself to write at your own pace. Recognize when you need to take a break or stop. Give yourself permission to stop. Be gentle with yourself.

For me, it had to be a gradual process. Some survivors might be able to rip off the Band-Aid, but I could only write a little at a time. First I was able to mention both of my rapists, for example, while writing in my journal. Before, I’d suppressed the bad memories; I never wrote about either of the men who raped me because I just knew that I despised and feared them. I could barely recall other things from the time that they’d each been in my life. Large black clouds comprised most of my memories, even devouring good things, leaving great wide holes.

When I was a teenager, I dreamed that a black oily substance was eating the sky. In the dream, my family and I were trying to figure out what was happening and how to stop it. Bit by bit, the sky—and world—disappeared.

I’m still trying to reclaim much of my own sky.

Since trauma survivors often suppress memories in the brain’s attempt to keep you alive, it made sense that I had a lot of digging to do. And the more I dug, the harder the flashbacks hit me.

My nightmares intensified. The panic attacks came more frequently. I was constantly snapping at the people around me—usually Mike. I knew that it was going to get worse before it got better, though, so I kept trying.

The more I wrote, the more I remembered. Even though I didn’t really want to remember because I knew it’d be painful, I really wanted to get better. I wanted to stop having panic attacks, to become motivated and productive again. I wanted to actually feel happiness, to grow stronger. To reclaim my life and my voice.

So I took my time.

I started a new bedtime ritual: Benadryl to make me so drowsy and calm, my anxiety couldn’t keep me awake; one ASMR video on YouTube or a round of Bejeweled to clear and calm my mind; one chapter of a familiar audiobook read in a soothing tone that I could drift off to; stuffed animals to hug tight while I slept. It’s been over a year and I still go to bed like this every night. Someday, I’ll be able to let go and fall asleep on my own. But for now, I give myself permission to continue this ritual for as long as I need it.

I carved out a strict workday for myself. Monday through Friday, I only work from 8 or 9 a.m. to 5 or 6 p.m. I don’t work weekends. Evenings are for my “me” time—reading, watching TV or movies on Netflix, or playing Sims. If, during the workday, my body needs some rest, I take a short 30- or 60-minute break just to sit comfortably, maybe read a book or watch Netflix.

I got myself back into a healthy sleep schedule. I’ve always been a night owl, but letting myself stay up all night and sleep until noon was hurting my productivity and affecting my mood. I use my iPhone to remind me to go to bed by 11 p.m. and wake me up at 8 a.m.

I eat three meals a day, plus snacks—no matter what. Since I’m hypoglycemic, skipping meals can make me very sick or very anxious. Even if I don’t have much of an appetite, I eat something small.

I take all of my meds on time. I use a weekly pill box with morning, noon, evening, and bedtime compartments, and Alexa to remind me to take my pills. Right now my meds are: Prednisone, Plaquenil, Tramadol, Flexeril, Vitamin B12, Vitamin D, Benadryl. I take them religiously.

When I’m not too sore, I do yoga. It’s been a while, to be honest, and I’m feeling it. I also meditate, practice deep breathing throughout the day, and write in a journal. Up until recently, I couldn’t hold a pen in my stiff, sore fingers long enough to write down the date, so had to give up journaling—which was really hard to do, and I’m really glad I can write again.

I shower regularly, do my makeup to boost my mood, and get dressed even when I’m not leaving the house. Sometimes I just let myself stay in my pajamas all day, though—whatever makes me feel best.

For you, self-care might mean different things. What’s most important is that you take care of yourself. Treat yourself as if you were your own sweet child. Be kind and gentle, but firm when necessary.

What are your favorite self-care tools? Leave a comment and tell me three of them!


Note: This blog post is a raw, unedited chapter from my current work in progress, Writing Through Trauma. Part memoir and part inspiring instruction, Writing Through Trauma aims to help you write your way through difficult events in your life. Click here to join my email list to get notified when I post new chapters.


Read More: Chapter 1

Six Days Into a Crumbling U.S.

via Unsplash

It’s only been six days since Trump was sworn in as President. I knew things would start happening, and that it’d be fast, but I couldn’t have imagined how quickly.

Before Inauguration Day, Congress voted on their annual budget, which is normal. However, they re-allocated the ACA budget to miscellaneous. In Trump’s six days of office, he’s signed executive orders to:

  • give power to agency and executive department heads to “waive, defer, grant exemptions from, or delay the implementation of any provision or requirement of the [Affordable Care Act]” while he works on repealing it
  • pull federal funding from women’s affordable healthcare organizations that provide abortions, ignoring the fact that these same organizations also provide cancer treatment and other healthcare to low-income women, men, and teens
  • resume and speed up the Dakota and Keystone Oil pipeline projects, continuing to route them through Standing Rock despite environmental concerns, land treaties, and President Obama’s executive order to halt the DAPL and look for alternative routes
  • pull the U.S. out of the United Nations
  • withdraw the U.S. from the Trans-Pacific Partnership
  • ban refugees from entering the U.S., begin deportations, give police officers power to act as immigration officers, and block federal funding from sanctuary cities
  • allow torture of political prisoners, which breaks the Geneva Convention
  • begin building a wall between the U.S. and Mexico, which Mexico has refused to pay for; I suspect the ACA’s re-allocated funds will be paying for its materials, and political prisoners will be used for slave labor to build it
  • impose a federal hiring freeze
  • put a gag order on federal employees from disclosing information to the public or press (Environmental Protection Agency; departments of Commerce, Health, and Human Services; the Interior; and the Department of Agriculture, which was later lifted after public outcry)
  • initiate an investigation into illegal votes, which can be used as a reason to affect voting in future elections

(Note: I will edit later and link to each EO; I’ve already spent too long at the computer and my joints are extremely sore.)

A President can sign as many executive orders as he wants, bypassing Congress. Congress can pass legislation to override EOs, but the President can veto them.

Trump said in a 2014 Fox interview that he wanted to wreak havoc.

You know what solves it? When the economy crashes, when the country goes to total hell and everything is a disaster. Then you’ll have a [chuckles], you know, you’ll have riots to go back to where we used to be when we were great.

So did Trump’s Chief Strategist and Senior Counselor, Steve Bannon, in a 2013 interview.

“I’m a Leninist,” Bannon proudly proclaimed.

Shocked, I asked him what he meant.

“Lenin,” he answered, “wanted to destroy the state, and that’s my goal too. I want to bring everything crashing down, and destroy all of today’s establishment.”

Trump has been leveraging our social, political, and working class issues, instigating the blame of our problems on disabled people, black people, Latinxs, and Muslims. He insists that the ACA is being taken advantage of by lazy people who don’t work. People who rely on the ACA and Medicaid for healthcare are veterans, single parents, people with disabilities, cancer patients, retired people, and low-income families. No statistical evidence suggests that any large percentage of people covered through the ACA are “lazy people.”

Trump blames crime on black and Latinx people, saying that killings in Chicago—largely populated by black and Latinx people—have increased, when they have in fact decreased. Chicago has long been a site for regular Trump protests. Yesterday, Trump threatened to send military into Chicago under the guise of preventing any more murders.

He’s destroying our relationships with other countries’ leaders, which may be irreparable.

Though Trump’s authoritarian regime and collapse of the U.S. has begun, there’s still a lot we can do.

Kendzior also says, via several tweets:

There’s a lot to do. I advise working locally. Know your community. Pick an issue or two you care about and commit for the long haul. And understand that as horrifying as this all is, millions stand with you. Find common ground, stand up for others—and know the enemy.

Senator Markey and Representative Lieu have introduced legislation to prevent Trump from launching a nuclear first strike without a Congressional declaration of war.

Shit is real here in the U.S., my home. Most of the people I know are either completely oblivious, in denial. They don’t see how dire things are. I’ve been following all of this and urging family and friends to pay attention. They won’t. I think, honestly, most of them just can’t believe anything like this can happen. They believe that our Constitution and government will protect us. The Constitution can only protect us if our government upholds it. Right now, our government is fighting amongst themselves. There’s little opposition from the Democrats against the Republicans and Trump’s Cabinet.

This is really happening.

We’re really living this.

It’s not exaggeration or alarmist to say that we’re living in an authoritarian crackdown. It appears that Trump is compromised, by both the Nationalists he’s put into his Cabinet and Putin.

This is really happening.

Alexandra Erin says that even Trump might not understand what he’s doing; he’s being told what to do (click the tweet to read thread).

It’s possible that we mere peons cannot even begin to understand what’s happening to us. We just know that we don’t want it and we don’t deserve it.

I’m at a loss here myself. I read each executive order with growing cynicism and horror. To be honest, I didn’t want to believe Kendzior’s and others’ apocalyptic predictions before and around Election Day. I thought that by urging electors to vote against Trump would be enough, but now it seems that we were fighting the wrong battle. We should’ve been urging our senators and representatives to pass legislation to block all of the things that Trump promised during his campaign, protecting all of the people that Trump is trying to harm.

It might be too late.

I’m not giving up. I’m terrified, to be perfectly honest. With every executive order that I read, I find it harder and harder to focus on anything; writing and working as normal seems pointless in the face of what’s happening. When this has happened in other countries, millions of people died. It seems like a cleansing has begun: women, disabled people, non-white people, queer people, Muslims.

I am three of those groups.

I said that the best resistance is existence, to keep creating art and living in spite of what’s happening. I urged people to donate to the organizations that fight for us. I pulled out an old YA novel that I wrote in 2011 about two lovestruck seventeen-year-olds fighting Nazis and told myself that I should put all of my angry, anxious energy into revising it.

I still believe in fighting for our freedom. I come from a family of veterans and I will never dishonor their sacrifice and memory by giving up those freedoms. I will keep writing. I will send letters to the White House. I will put aside my phone anxiety and call my state Senator and Representative, and ask them to fight. I will start attending town meetings and make my concerns heard.

I will be brave by keeping on, even when I’m scared and overwhelmed. Even when people around me diminish my concerns. Especially then. Too much is at stake.

Note to Self

via Unsplash

You can’t catch up on old projects and work on new ones at the same time. It just doesn’t work that way, especially with chronic illness—and life in general. Sometimes, you just have to accept that shit happens and, rather than “should”ing on yourself, slow down and focus on what’s most important.

Your physical health.

Your mental health.

Your loved ones.

Your wellbeing.

Eerily accurate. #virgo #horoscope #2017goals

A post shared by Elizabeth Barone (@elizabethbarone) on

Goals can be adjusted. Production schedules can be rearranged.

So, tomorrow morning, grab a cup of coffee, let go of the things you think you should be doing, and be gentle with yourself.

You’re way more important than any silly schedule.