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.

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.

via GIPHY

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.

On the Wings of Hope (Plaquenil, 2 Months)

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It’s been quite a while since I checked in here with a full health update. To recap, I started Plaquenil on December 1st, 2016, along with Prednisone to get the inflammation down and give me some relief while the Plaquenil got working. Aside from a few mood swings and hot flashes, I’ve been doing well on the Prednisone; I’ll take almost anything over flareup-level joint pain, to be honest. Most of the side effects have simmered down, though. In between now and then, I came down with the flu and had some debilitating neck and lower back pain.

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.

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*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.

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.

Fuck Arthritis

via Unsplash

Lately, I’ve been struggling.

There. I said it.

I had so many plans and hopes for this new year—so many things I wanted to do. Yet these past couple weeks, I’ve been mostly immobilized.

I’ve been bedridden before. I’ve spent entire winters doped up on painkillers, binge-watching whatever from the relative comfort of my bed. But this winter was supposed to be different. I’d started Plaquenil and Prednisone, and they were helping. Then they weren’t—or at least, not as much.

It started off slowly. The joints in my neck and lower back hurt, but the pain was tolerable. As a whole, I was feeling better; I could actually use my hands again. Then the joint in my neck swelled to two or three times its normal size, and my back joined the screaming chorus.

At first, I thought it was my new pillows. I’d bought a couple king-size pillows and they’re super thick. I figured I’d tweaked my neck while trying to sleep on them. I bought a less thick pillow and the pain immediately improved. Until it got worse again.

So then I thought it might be my work setup. For the past few months, I’ve been working from my couch. Not the most ergonomic setup—especially since I tend to lean into my computer when I really get into whatever it is I’m working on. I became more mindful of my body while working, keeping my neck and back more straight while on the couch. Mike joked that we should duct-tape my head to the couch to keep me from leaning forward and putting strain on that joint.

I also cleaned up my office a bit and returned to working at my desk. It’d become a bit of a dumping ground these past few months—getting more and more cluttered as I felt worse and worse. Even still, with a proper desk and chair, I can’t sit at the computer for very long. If I’m lucky, I’ll make it 40 minutes.

The only time my neck and back aren’t screaming is if I’m reclined on the couch with full blast heat on them—or flat on the floor on my yoga mat. Alternating heat and ice was helping, but the other day I iced my neck for no more than 20 minutes and it made it worse. A lot worse.

Last Thursday, I saw the APRN at my GP’s office. I had to go in for a refill anyway, and figured I’d have her look at my neck—which was my biggest concern, considering the joint is so swollen. I told her what I’d been doing: TENs machine, Advil, rest, ice, heat, Tramadol (as well as my Plaquenil and Prednisone). She said the joint was definitely swollen. I explained that the Advil was helping a little, taking it down by a notch, and told her I’d been taking two Advil three times a day. I asked her if I could take more and, if so, how much would be safe to take in a given day.

“Don’t take too much, or it’ll cause an ulcer.”

“Oh, of course! But how much can I safely take?”

“Just don’t take too much.”

I wondered whether I’d accidentally walked into an episode of Punk’d. “Okay, well, is there anything else I can do? It’s really painful.”

“The Prednisone should help it.”

“Well… I’ve been on it for a month, and this is a new problem.”

She mentioned Prednisone again, completely brushing me off.

It wouldn’t have been such a big deal, if my husband hadn’t recently been in to see her about his swollen knee. She prescribed him a relatively new NSAID: ibuprofen 800, which also has an antacid in it to lower the risk of ulcers. I don’t think she does it on purpose, but she doesn’t listen to me. There’s definitely a gender bias when it comes to patients, and until now I’d never really dealt with it so blatantly. When she sees Mike, she’s on her game, helping him with all of her expertise. When she sees me, she either laughs me  off or ignores me completely.

That’s not even what I’m really angry about, though.

Every day, I fall further and further behind on my production schedule. I try to do simple things around the house—like cleaning my bathroom—and I pay for it for days. For a brief window, I got a glimpse of what it’d be like to live with low pain. (On one particular Sunday, it went down to a 5/10!) I started to feel hopeful that I’d get my life back. I know there’s no cure, that I’ll never be pain-free again, but every time I turn around, I feel like I’m losing yet one more thing.

I haven’t worked a normal job in years.

I haven’t been able to write in months.

I’m just really tired of this disease taking from me, and I still don’t even really know its damned name.

And, if I’m being really honest, I’m a little scared.

My pain has changed; now when any of my joints creak, there’s pain where there wasn’t before, and the pain in my neck and lower back is a burning pain that creeps up and down my spine like fire. Every time my disease changes, we find another piece to the puzzle. My doctors have said so many times that something autoimmune is definitely brewing, and I’ve joked that if this is “just” brewing, I don’t wanna know what full force feels like.

So I wonder: Is this full force? Am I about to get the answers I’ve been wanting? And, if so, will I like those answers?


I have a really hard time asking for help, but I’ve got electricity/heat, student loans, and other bills creeping up on me. If you’d like to help, you can buy my books, throw me a tip on PayPal, or donate to my GoFundMe. If you can’t help financially, a comment offering virtual hugs would really lift my spirits. I appreciate your support, in whatever form. 💜

Alexa and Siri Are My Bitches

via Unsplash

And by “bitches,” I mean “dear friends who help me with things.”

This weekend, I finally upgraded my pathetically outdated iPhone 4. Not even the 4S—the 4, you guys. It was years old and turtle slow. It did make calls, which is pretty much the point of a phone, but in my out-in-the-country apartment, I barely have service. Texting is my main method of communication—that and FaceTime. I’ve long been eligible for an upgrade, but money’s been tighter than tight. Sprint.com had a deal: a free iPhone 5S with a two-year contract renewal. Um, hello!

I’d been using Siri on the iPad, which we got secondhand in December 2015—and it radically changed my life. When it’s plugged in, you can use the “Hey Siri” feature, which is pretty handy. For example, if I’m cooking dinner and the iPad is on the counter playing a podcast, I can plunk my sore body down and say, “Hey Siri… Set a timer for 20 minutes.” Hands-free, which my achy fingers and wrists really appreciate. I don’t have to walk across the kitchen to reach the iPad, which my hip and lower back also appreciate.

Since activating my new phone, I’ve used Siri mostly for texting. I’ve been having a hard time with texting lately, because my thumbs and wrists are so stiff and sore. The simplest messages take me forever, and it’s almost guaranteed that I’ll goof them up somehow. It’s really amazing to hit that button and say “Read my texts” or “Text so-and-so…”

While the tech itself is cool and I nerd out a lot about it, I’m all about the accessibility. If Siri has been helpful to me, imagine how helpful it is for others!

I would’ve been completely satisfied with my Siri, but my aunt got us an Echo Dot for Christmas. Now my little gang is complete with Siri and Alexa.

At first, back when Alexa first launched, I thought it was a tad bit creepy that Alexa is always listening. You don’t press any buttons. You just say “Alexa,” and then whatever command. It was also kind of buggy when it first launched; it didn’t understand a lot of things and often played the wrong songs, etc. But Amazon seems to have ironed out some serious kinks. However, Alexa doesn’t seem to understand my husband. Maybe it’s because he spent its first night home completely torturing it: “Alexa, what drugs do you do?” Now Alexa ignores him completely. (I can’t really say I blame it.)

In the morning, I’m supposed to take my Plaquenil, Prednisone, and one of my two Tramadol for the day with some food. I’ve been having trouble with Plaquenil and dairy, though, so if I have any dairy in my breakfast, I wait before taking my meds. Being that I’m so stiff in the morning and my mobility isn’t the greatest until Prednisone kicks in, I’ve already settled into a rhythm with Alexa. When I finish eating, I say “Alexa, set a timer for 20 minutes.” It can hear me from across the room and starts the timer right away. I can even ask it, “Alexa, how much time is left on my timer?” I don’t have to get up or push any buttons. For me, this is a dream. When the timer goes off, I say “Alexa, stop,” and take my meds with water.

I’m sure I’ll find more uses for Alexa and Siri. I’m trying to figure out how I can have Alexa read my manuscripts to me while I’m editing; it can read Kindle books, but I don’t know if I’d have to format my WIP as a .mobi first or if it’d work just fine if I just load it into my account as a .doc. This would help me catch more errors in early passes.

Siri can also take dictation; I’m planning on setting aside some time to play around with writing by dictating to Siri on my Mac. I know a lot of authors love Dragon, but I just don’t have the budget for it. Dictating my novels—if I can get the hang of writing out loud—would really take some strain off my wrists.

I know a lot of people are kind of weirded out by voice-commanded tech. It seems futuristic and slightly creepy. My dad, for example, wants nothing to do with it. I completely agree that there are certain lines you just don’t cross. I wouldn’t load all of my payment and banking information into Apple Wallet, for example. That’s just asking for trouble—or at least, it seems that way to me. But Alexa can order things off Amazon for you, and you can even set a voice code so that it can’t be abused. I don’t often feel well enough to run errands, and Mike is usually exhausted and raring for a nap after work, so it would be pretty handy to say “Alexa, order some paper towels” or whatever when we’re running low. They’d be delivered straight to my door, saving both of us some time.

You can even connect certain home objects to your Alexa. It’d be so rad to say “Alexa, turn down the thermostat” or “Alexa, turn on the bedroom light.” I can easily imagine mornings, when it’s hard to get out of bed, made a bit easier by my girls: “Alexa, read Let’s Get Visible.” I could still be productive.

I do feel kind of weird “bossing” Alexa and Siri around. I can’t help but think of The Matrix and even Dollhouse. It brings up some interesting questions. Does AI have feelings? What makes us human? Sometimes I say “please” or just tell them they rock. I can easily imagine a future where voice-commanded AI is super useful or completely and totally abused—or abusing us! It’s definitely an intriguing avenue to explore in fiction. My Amarie in the f/f companion novel to Just One More Minute always says “please” to Alexa and Siri, because she doesn’t want to hurt their feelings. (Amarie is so sweet, and I can’t wait for you to meet her!)

Security and ethics aside, I welcome our robot overlords. As long as you’re smart about how you use them, they can be extremely beneficial to those of us with limited mobility. I’m even envisioning a future where, instead of the Life Alert lanyard, elderly people have an Echo Dot or something similar in their home; if they fall, they can say “Alexa, call 911” or even “Alexa, call my daughter.”

There are so many fantastic uses for Alexa, Siri, and future iterations. I’m eager to see how this technology progresses!

Do Alexa and Siri creep you out? How would you utilize them in your everyday life? Let me know in the comments!