Can’t Win (Plaquenil, 1 Year)

My Christmas cactus that I got the same day I started Plaquenil.

Today I’ve been on Plaquenil for exactly one year. While Plaquenil and Prednisone worked really well for my joint pain, both gave me some unfavorable side effects. Prednisone made my blood sugar skyrocket and threw some of my other labs off, so I had to wean off it. Plaquenil did okay on its own, but for some reason the GI side effects—diarrhea, heartburn—just keep getting worse. I had to come down to one pill a day instead of two.

I’m feeling it.

My rheumatologist said that if I flare, she’ll put me back on Prednisone, so there’s a good chance I’ll be starting it soon. I want to feel better—and I really want my hands and hips back—but I’m scared of the high blood pressure, freaky blood sugar, and weight gain. So I may have been holding off on making that phone call.

It feels like I can’t win.

This may be TMI, but Plaquenil can be an outright asshole. At first it seemed like it wasn’t getting along with dairy, but now it seems to give me diarrhea randomly. Heartburn, too. You’d think those are minor side effects, but trust me, they can quickly ruin your day. And your night.

SIGH.

Still, I look at posts and pictures from a year ago, and I know these two medications have saved me, side effects be damned. It comes down to a choice: would I rather debilitating joint pain and fatigue, or random bouts of diarrhea and heartburn, paired with high blood pressure, blood sugar spikes and crashes, and hot flashes?

via GIPHY

I’m trying to hang in there until my rheumatology appointment; playing phone tag is not my idea of fun, and I get shitty cell service in my apartment, which makes it even worse. I’d rather speak to her in person and go over our options. (She’s wonderful on the phone, too, but connecting is always a challenge.)

My appointment is almost two weeks away, though, so I’m gonna have to call.

It doesn’t help that I’m facing losing my health insurance, but that’s a whole other post. The gist of it is, my state changed its income regulations this year and we are now just a couple hundred dollars over the requirement. Yet we can’t afford a monthly premium and we sure as hell can’t afford appointments and prescriptions out of pocket. A friend suggested I can appeal the denial, but we weren’t denied—I’m stuck in an Access Health CT website loop. (If you live in my state, you know what I mean.) So that’s another phone call I’m dreading but have to make.

via GIPHY

It’ll work out, though. In the meantime it’s all about managing my pain and anxiety.

On the plus side, if I start Prednisone again, I’ll be able to take notes for my classes. (My hands have not been digging this whole pen holding thing.) I’ll also be able to type faster.

And did I mention that my beautiful Christmas cactus is now a year old? It’s now so full and there are several vibrant blooms (with dozens more budding). A month ago, it didn’t seem like it was going to bloom at all. A year ago, I wasn’t sure I could keep it alive. (I’m all right with succulents, but this one came from a pharmacy and I didn’t know how it would do.)

There’s a metaphor in here about patience and faith. I think.

The Real Cost of Chronic Illness

via some ecards

Chronic illness costs more than you’d think. Financially speaking, it’s the thousands of dollars spent on doctor’s appointments and medications. It’s the medicines, salves, and mobility aids not covered by insurance. It’s takeout in place of a home-cooked meal. It’s time lost at work due to sleepless nights and bone deep fatigue. It’s whole careers and goals, and starting over with new dreams and hopes.

There’s also an emotional toll.

It’s the frustration of finding the right treatment and the side effects of medications. It’s the devastation of years of pain. It’s evenings crying at the sink because it hurts to wash dishes when wrists bend to scrub. It’s the sharp inhalation of breath every time you bend over because knees won’t bend and hips shift as if on broken glass. It’s feeling exhausted after taking a shower, or skipping one because it’d only wipe you out completely.

Then there’s the pain of friends and family who don’t get it. It’s comments like “You’re not using your cane! You must be all better!” It’s dismissive belittling: “That’s not too heavy,” “You just need to walk more.” It’s the feigned interest, the change of subject.

The most substantial cost, though, comes when those close to you—the people you thought understood—actually don’t. It’s the priciest lesson, the deepest cut.

It’s a common occurrence for people with chronic illnesses. It happens to us all the time. We’re treated as an inconvenience—or worse, we’re treated as if we’re purposely inconveniencing someone else.

As if we have control over our illnesses or the weather.

Chronic illness teaches you who’s real and who isn’t, who truly belongs in your life. People like my mom and sister, who stopped by when I couldn’t go apple picking a few weeks ago and brought me apple cider donuts. They drank tea with me and turned an otherwise miserable and lonely afternoon into a nice memory.

All people like me need is a bit of understanding. We don’t enjoy canceling plans. It’s not fun being stuck home under an electric blanket and painkillers. I’d much rather be able to get out and live, but my body often has other plans. Slowly I’m learning to live around it, but it’s even harder to live around a broken heart.

Getting Out for My Own Sanity

I had such a great weekend. I’m still really low on spoons, but it was worth it.

I kicked it off on Thursday with Chapel and Good Charlotte at Toad’s Place with my sister Lauren. Chapel was new to me, but I fell a little bit in love—especially with their drummer, Kortney. She was excellent, and she also looked like she was having the time of her life, dancing and smiling the entire time she played. There may be a future character inspired by her.

Good Charlotte played well, but after middle act 3OH!3, the atmosphere changed. The crowd got pretty aggressive. We were getting shoved and hit. Let me tell you, when you’re already really sore, the last thing in the world you want is to get beat on at what should have been a tame show. Good Charlotte actually stopped playing to tell people to knock it off—that’s how bad it was.

We ended up leaving early because it was nearly midnight and Good Charlotte was still playing. As much as we would’ve liked to stay, we both agreed that we were tired… and sick of getting knocked around by other women and giant douchebags alike.

That was my first and last experience with EDM. I’ve debated whether I even wanted to write about this. But I’ve been to dozens of concerts—even stood in mosh pits—and I’ve never had such a horrible experience. It’s hard to explain, but in pits, everyone is there to bump into each other. Sometimes people get hurt, but it’s all in good fun. And everyone in the pit is there for the same thing. This was general admission—no mosh pit—and the house was packed. It was about a thousand degrees and you couldn’t breathe without brushing the person next to you. People really wanted to hurt each other; at one point, someone ripped a crowdsurfing guy down and people started beating on him.

I really think the shitty EDM group set a bad tone. Not only were their lyrics misogynistic and excessively raunchy, but the “music” itself made you feel bad. My heart was vibrating in my chest, the little hairs on my arms were shaking, and I actually felt nauseous. Throw in the lights and bass pounding on you, and… ugh. I will never understand EDM. Ever.

I mean, I don’t wanna sound surly, but the whole experience was bizarre. Even though I was enjoying the Good Charlotte nostalgia, I was really glad when Lauren asked if I was ready to head out. They’re her all-time favorite band, so I didn’t want to tap out on her, but I was more than ready.

Saturday night was much more tame, thankfully. It was time for Part II of our great summer concert weekend: Haerts and Michelle Branch. See, Lauren basically spent all summer prepping for the Bar and then taking the 12-hour exam itself, so when she saw these shows coming up, she decided to treat us. She more than earned it; everything I’ve heard about the Bar sounds brutal.

I brought my cane with me, and there was plenty of seating in the back, but we ended up right up near the stage. Carpe diem, right? No one beat on us this time, so that was cool. There were a lot of drunk girls, though, haha, and I think we both got spilled on a little—but I’ll take that over someone trying to knock me over.

Haerts was another new-to-me band, and again I fell in love. They’re ordinarily a duo, but they had a full band with them, and they sounded amazing. I thought Nini reminded me a bit of Stevie Nicks. She had some pipes on her!

Then it was time for Michelle Branch and let me just say, my inner 12-year-old self was completely validated. I was a little bit in awe, especially since she had a range of guitars, swapping them out for certain songs. She was the reason I started writing (terrible) songs in eighth grade. I used to carry around a notebook and dream of the day when I’d finally learn to play guitar and put my words to music.

Well, turns out I’m instrumentally challenged, but I haven’t stopped writing.

It also turns out that cane dancing is possible. Having a cane comes in handy when you need to get off your hip for a moment but don’t want to stop dancing. I definitely had a better time at the College Street Music Hall shows than I did at Toad’s on Thursday. I was also less sore after.

On Sunday, we got up early and drove to the lake to spend the day with Noni and Aunt Wendy. Unfortunately my mom had to sit this one out because of her neck. Even though we missed her, we had a great day.

I spent yesterday recovering and doing a bit of editing. My brain was mostly mush, though, and I was in bed by 7 p.m. (but didn’t fall asleep until around 2 a.m., sigh). Though I’m still pretty tired today, I’m still riding a Haerts and Michelle Branch buzz.

Music is a kind of magic to me. I’m really glad my sister got me out and about this weekend. It’s too easy to let the pain win, to get dragged into a life of hibernation, a routine of rest. While I try to listen to my body and take it easy as much as possible, sometimes—for my own sanity—I have to push it.

Sometimes the pain is worth it.

I’ll Go Down Swinging My Cane

Photo by Chris Barbalis on Unsplash

When I got sick 10 years ago, I wasn’t planning on getting sick. I was actually planning to grow my web design business, save up the good salary I was making, and have a family. I wanted three kids. I’d only just started dating Mike, so I can’t say I was planning on marrying him, but I was an 18-year-old woman with hopes and dreams. I didn’t plan on getting sick. My goal was not to leave the workforce and become homebound because of my illness. I wanted to travel, to eventually set down roots and buy a house. I didn’t plan on going on state insurance because my husband and I couldn’t afford his company’s plan. I didn’t foresee setting aside my dream of having a family.

Let me be clear: I love my life. I’m happy that, even though I’ve lost a lot, I have been able to pursue my other dream—being a storyteller—even while bedridden. But I did not plan on getting sick.

No one does.

Mothers don’t hope to give birth to a baby who loses a kidney before he can even walk. Veterans don’t think they’ll spend their retirement years battling cancer instead of enjoying their grandchildren. Hardworking women who once worked multiple jobs don’t pencil in getting emphysema and pneumonia on their schedule.

But it happens, because life happens.

Today the Senate voted to continue working to repeal Obamacare and replace it with Trumpcare. The proposed bill blocks people with pre-existing conditions from getting insurance, takes away funding from state insurance that helps low-income people, and all but cripples healthcare assistance for the elderly and disabled.

All of this right smack in the middle of my disease changing.

Aside from worrying about family members and friends who will definitely be affected by the Senate’s decision today—possibly mortally so—I’m concerned about me. Because not a day goes by that I don’t wonder how different things might be for me if I hadn’t gotten sick. Would I have a mortgage and three kids? Ironically, if I hadn’t gotten sick, I could afford to pay for my healthcare.

I didn’t get a chance to really blog about it, but I’m having bladder and nerve issues that may be related to my UCTD—that may indicate that it’s developing into Lupus. I’m waiting on labs that my new rheumatologist ordered to check on my kidneys. I’ll probably be seeing a urologist to figure out what’s going on with my bladder; a neurologist ruled out carpal tunnel and said she thinks my nerve pain is from my autoimmune disease. My rheumatologist said that Plaquenil can be great for some things but not others; I may be looking at adding another medication to my regimen.

More tests, followups, and medications that I cannot afford out of pocket.

Under Trumpcare, I’d be blocked from getting insurance because of my pre-existing condition. Right now, I truly don’t know what’s going to happen to me.

And I’m trying like hell right now to not think about the people I know who will actually die without their medications and treatments. Because if I do, I won’t be able to breathe.

Today my country made a shameful, disgusting decision—all because part of the government can’t stand that a black president dared to try to help sick, disabled, and low-income people. They can’t bear to let Obamacare exist, just like they couldn’t bear to allow the original bill to pass. Instead of trying to fix the things that are wrong with Obamacare—like the annual fee for uninsured people that, ironically enough, the GOP helped create because they bickered over the original bill—they’d rather burn it all down, out of spite. They’d rather not examine the exorbitant cost of healthcare and medication in this country. And now 24 to 32 million Americans face losing healthcare. Of those 32 million, a good percent of them will die without it.

I cried all afternoon. My eyes are swollen, my heart is broken, and my autoimmune disease continues to attack my connective tissues, nerves, and bladder. I don’t know what’s going to happen to me or my loved ones. I keep trying to find some hope tonight, something to hold onto. Because I’m one step closer to losing my healthcare, but it’s not over yet.

My Autoimmune Disease is Getting on My Nerves… Literally

Photo by Matheus Ferrero on Unsplash

I had a nerve conduction test with my new neurologist yesterday. The test was to see if the numbness, burning, and tingling in my hands is because of carpal tunnel. I was referred by my old rheumatologist.

I liked Dr. Z instantly. She is straight to the point, but really nice. Mike’s been seeing her, so I was already familiar with her and right at ease. Still, I was a bit nervous. Since my old rheumatologist referred me back in April, my symptoms have progressed.

  • the tip of my right index finger has a constant burning sensation
  • the area beneath my thumb on my left palm goes into spasms
  • my feet now get burning and tingling sensations

I had a feeling I wasn’t dealing with carpal tunnel.

During the test, Dr. Z and I chatted about my symptoms, my autoimmune disease, and which doctors I’ve seen. Even though she can seem brisk because she gets right down to things, I found her very warm and personable.

When the test was over, she explained how it worked. Basically, the computer measures how long it takes the electric stimulation to get from Point A to Point B. She showed me the normal ranges and where mine are: normal.

The good news is, she said I don’t have carpal tunnel.

The bad news is, she said it’s likely my autoimmune disease attacking my nerves.

In further good news, Dr. Z said there’s no nerve damage yet. She only tested my hands, and told me that if I’m still having the sensations in my feet in four weeks, to come back. (Since it’s a new symptom, she prefers to wait another month before testing.)

Next week I see my new rheumatologist. I really hope she can put these puzzle pieces together; neither bladder inflammation nor nervous system problems are really a UCTD thing. They’re more of a Lupus thing, and since Dr. S had said my UCTD could be pre-Lupus, I’m a little concerned.

Now that my joint pain is under control and I’m not bedridden or dependent on Mike to help me get dressed, I’d really like to address these other symptoms. I just hope that my new rheumatologist is willing to figure this out with me.

A Sudden Goodbye

Photo by Ross Findon on Unsplash

Yesterday my father-in-law told Mike that he got a letter saying that our rheumatologist was leaving the practice. I didn’t want it to be true, but I didn’t think my FIL was mistaken. So I called Dr. S’s office.

It’s true.

They couldn’t give me any information. The receptionist I spoke to said she honestly didn’t know. All the staff had been told was that it was personal. It was sudden. I asked about my appointment later this month, and she told me he was already gone.

I’ll be seeing one of the other rheumatologists that day instead.

I’m crushed.

I don’t know how to feel or what to expect from Dr. C. I don’t know if she’ll stick to Dr. S’s treatment plan. If she’ll change my diagnosis. If she’ll even take me seriously. Every time I see a new doctor, I have to start from zero. I have to convince them that, even though my labs are vague, I am legitimately sick.

Every single time.

This couldn’t come at a worse time. I’m dealing with new symptoms, that I thought were carpal tunnel but are now affecting my feet as well as my hands and wrists. There’s a chance that it could be my UCTD developing into Lupus. I need my rheumatologist, who has taken me seriously and worked very closely with me. Not a doctor I’m being shuffled off onto, who now has an even heavier load of patients.

I want to be optimistic. I really do. But it’s hard.

Summer Flare Makes Me Feel Fine

Photo by Erik-Jan Leusink on Unsplash

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

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

via GIPHY

Still, a few good things happened yesterday:

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

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

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

Why It’s So Hard to Ask

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

It’s trauma all over again.

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

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

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

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

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

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

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

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

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

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

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

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

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

“What is that?” I asked warily.

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

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

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

My hands shook and tears rolled down my cheeks.

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

He nodded. “Definitely. I understand.”

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

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

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

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

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

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

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

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

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

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

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

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

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

5 Comfort Movies for When You Need R&R

via Unsplash

When I’m having a bad pain day, dealing with bone-deep fatigue, or just need to feel safe, I look for a calming movie to watch. They’re the kind of movies that you can nap to, if you wanted to. No alarming soundtrack music swells out of nowhere. Though there is conflict, it’s light enough that it doesn’t stress you out.

Usually I look for children’s and family movies—something immersive and soothing. Romances and dramas are good, too. I look at the movie art and description. If the colors are soft or pastel, it’ll be calming—something I can nap to. If they’re bright, chances are it will be a relaxing experience that I can almost fall into.

When I can’t find something new, I have a few go to movies from my childhood.

Phenomenon

On his birthday, a man is struck by a strange light and develops extraordinary abilities.

Though there are a few exciting moments, you can easily lie down and relax. Just a heads up: though Phenomenon is a bit tragic, it ends on a happy note.

The Dark Crystal

The last two Gelflings embark on a quest to repair the Dark Crystal and save the world.

I remember watching this on rainy days as a small child. The Skeksis scared the crap out of me back then, but since it’s become a staple. It’s a colorful movie set in a fantasy world, and few things are more calming to me.

Homeward Bound: The Incredible Journey

A trio of pets get separated from their humans and decide to find their own way home.

I may or may not have watched this 1,900 times as a kid. Shadow, Chance, and Sassy made me desperately want a pet, and Sassy made me fall in love with cats. “No, dummy dummy dummy.” 😂 I think there are two moments in this entire movie where your heart rate kicks up, and everything turns out all right in the end anyway.

The Secret Garden

When an orphaned girl comes to stay with her uncle in his manor, she discovers a secret garden—and the key to restoring her family.

Here’s another movie from my childhood. Are you noticing a pattern? Though there are some sad undertones, The Secret Garden is visually stunning with all of its beautiful landscapes, and there are few loud moments.

A Little Princess

A young girl becomes a servant at her boarding school when her father goes missing.

Another movie based on a Frances Hodgson-Burnett book, and also one of my all-time favorites from childhood. Sarah’s stories alone are super soothing. I wish someone had the foresight to hire that kid to record audiobooks. Even though there are a couple sad moments, this is another movie that has a happy ending.

Each of these has a bit of a fantasy element to it, most of them are children’s movies, and all of them were filmed in the ’80s and ’90s but have an evergreen feel. There’s no distinct decade music (though the score from The Dark Crystal is admittedly pretty ’80s).

Unfortunately none of these are on Netflix or Amazon Prime at the moment, but they’re worth renting or owning.

What are your favorite movies for R&R? Let me know in the comments!

I Want to Be the Kind of Person Who…

via Unsplash

I’ve been in reactive mode for as long as I can remember; things keep happening, and I do things in response. For years I’ve felt like I’ve only just been keeping my head above water. Now, I know shit happens in life and I can’t necessarily control everything, but I’d really like to break out of that cycle.

Yesterday Sandy and I were looking for a laugh and searched for “how to adult” videos on YouTube, when we came across this.

What I thought was going to be funny ended up really opening my eyes. I don’t think I’ve been victimizing myself, per se, but considering all the trauma I’ve been through, it’s really easy to fall into a trap where I feel like bad things just keep happening to me.

It’s time for good things.

I keep seeing all of these indie authors making it and thinking things like “When is it going to be my turn?” and “What am I doing wrong?” I see friends buying houses and going on vacations, and I wonder if those things will ever happen for me. It’s not my fault that I got sick or that my pain is so debilitating I can’t hold down a “normal” job, but there are things I can control.

In December I got a new phone and one of its features is a bedtime and wakeup time. It’s been a game changer for me. All I had to do was tell it how many hours of sleep I wanted per night, then fiddled around a bit with a dial until I found times that I could live with. Since then, I’ve been going to bed around 11 p.m. and waking up at 8 a.m. almost religiously. I say “almost” because I have it set for weekdays and let myself stay up and sleep in a bit later on weekends. Aside from a few exceptions—painsomnia, events, Stardew Valley or Netflix rabbit holes—I’ve been sticking to this for months. And you know what?

I’ve been much more productive. I sleep better. I have more energy. I’m in a better mood.

I still have pain, I still have fatigue, I’m still sick, but combined with my new meds, I’m in a much better place. And all I did was change one small thing.

Kalyn’s video got me thinking: What if I took things a step further? Rather than stumbling upon and playing with an iPhone feature, I can make some conscious tweaks and improve my life even more. I sat down and thought about the kind of life I want, and I came up with this list:

  • I want to be the kind of person who will write every day.
  • I want to be the kind of person who is able to comfortably pay my bills and buy necessities.
  • I want to be the kind of person who has my own car.
  • I want to be the kind of person who can buy a house.
  • I want to be the kind of person who will regularly treat myself to a manicure and pedicure.

 

This week I wrote every day. I didn’t set a daily word count goal (though I do like to write at least 1K words). I was just happy with myself as long as I wrote. Usually, even if I didn’t feel up to it, the words started flowing after I pecked away at the keyboard for a bit. It didn’t hurt that I’m really enjoying writing Any Other Love. Even though I’d like to write much more, much faster, I’m still making progress. I’m making my way to 25K, then 30K, then 40K… all the way to my projected 70K.

I don’t work on weekends, so I don’t usually write then (but sometimes if I’m really fiending, I “sneak” in some writing). Saturdays and Sundays are mine to do with as I please. Netflix and chilling on my couch in the old fashioned sense of the word? Yep. Playing an obscene amount of Stardew Valley? Yes. Spending time with friends and family? Oh yeah.

Those are two more simple rules that I follow, and it works.

I’m still figuring out a plan for the other things—after all, one doesn’t simply buy a house out of thin air—but they feel achievable using these principles.

What kind of person do you want to be? Let me know in the comments!