Hello, 2017

via Unsplash

If you’ve been around for any period of time, you know I’m all about goals rather than resolutions. Setting actionable, achievable, and accountable goals is far more productive than making promises.

Usually, I keep my goals for the year down to a short list. Recently I heard about Level 10 Life, which is basically just your life, broken down into 10 areas. You’re supposed to set 10 goals for each area—100 in total—with the objective of eventually fulfilling all areas of your life. I don’t know about you, but I don’t think it’s possible to ever reach 100% fulfillment; there’s no such thing as perfection. Plus, I think 100 goals is a bit overwhelming.

Goals are supposed to be challenging yet within reach. If you set the bar too high, you’ll set yourself up for failure.

A few weeks ago, I found a wheel of life pin that I loved. It focused on eight areas of life rather than 10, with one goal in each area. The objective is to achieve more balance in your life; once you reach a certain goal, you set a new one in that area.

I tried making the wheel of life and failed epically. After several attempts, I realized I didn’t need a Pinterest-worthy craft to help me set goals for 2017. I sat down with my white board and several dry erase markers, and got busy. This list is the result.

My Goals for 2017

Home

Get curtains for all windows. Though it has its quirks, I love our little country apartment, and hope to stay here until we’re ready to start a family. (That’s a whole other blog post, so stay tuned.) To make our place look even more home-y, I’d like to get curtains for each window. Fortunately—in this case, anyway—there aren’t many windows; our apartment was an attic in a former life. I’m starting with the kitchen, with the front door (which naturally has the oddest measurements ever, and I can’t seem to find anything). Challenge accepted!

Me

Get arrow, hummingbird, and spade tattoos. 2013 was the year I got married, and probably one of the best years of my life. But 2014 and 2015 were easily two of the worst years of my life. I lost one of my best friends in 2014 and in 2015, I lost myself. PTSD finally caught up with me and I completely bottomed out. But in 2016, I got better.

There’s a quote that really spoke to me in 2015-2016:

An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means that it’s going to launch you into something great.

I don’t know where it originated, but it really resonated with me—especially regarding my PTSD. I truly cannot explain how strong I feel. I’ve got my voice and my magic back, and I feel more me than I’ve ever felt. This is why I want to get an arrow on my ribs, on my right side—to remind me of how I shot forward in 2016. Something simple and delicate (my ribs do swell, after all, so tattooing that area might be a bit… challenging). Something like this, in this same spot:

I think this design is the one I’ll go with.

I’ve long wanted to get twin hummingbirds on my collarbones, for my Popi. He loved watching the birds at the lake, and the “hummers” were his favorites—especially the ruby throated hummingbird. Growing up, I always felt enveloped by magic whenever I could look fast enough to see them. Popi had hawk eyes and saw everything; he was the magic.

I like the general placement of the hummingbirds in the above pin, but I don’t love the design. My plan is to have Jay—the artist who did my hydrangeas and tiger lilies—design and tattoo my hummingbirds. I love his style and I know he’ll help me come up with something I love.

Finally, I want to get a spade in memory of one of my best friends, Sean. He loved spades—I’m pretty sure it was an old nickname, though I have to check with his girlfriend to make 100% sure—and had one tattooed on his forearm. I’ve been racking my brain, trying to figure out the perfect tattoo to remember him by. It suddenly dawned on me the other day that I should get a spade. I’ll probably add it to the sleeve I’m working on, on my left arm.

I’d like to get something for my Biz Noni, too, but for one, I’ll be lucky if I can afford three tattoos in one year. Plus, I kind of already got something for her: my hydrangeas around my Fievel. She was still alive back then, but my dad was talking about transplanting her hydrangeas in the yard. I thought about how amazing it was, that those hydrangeas stubbornly continued to bloom year after year after year—even though she couldn’t physically get outside to nurture them anymore. It reminded me of her; she was “up there” in age, but remembered everything and had survived much. I got the hydrangeas tattooed as a reminder that I can survive, too, even in the toughest of circumstances.

Money

Pay off all debt and past due bills. I won’t bore you with the details, but between my student loan, some credit cards that I opened to help us out, our bills, and my creative team from Booktrope, I’ve racked up a teensy bit of debt. I say “teensy” because I was panicking but when I added it all up, I realized it’s really not that bad. Some people are thousands of dollars in debt; I’m only about $5K in. Still, I’d really like to make it go away—especially the damned student loan that’s been hanging over my head for years.

Long story short, that student loan is from a half semester that I had to withdraw from due to health issues. It was too late to withdraw without penalty, so I got stuck with the bill. I’ve been trying to pay that thing off for almost 10 years now.

My accumulated debt grew to a ginormous monster in my head. I’d wake up in the middle of the night, heart pounding, terrified I’d go to jail for delinquency. That’s totally not the case, but anxiety lies. When I actually broke it down on paper, though, it suddenly became a teeny baby monster. Now that I’m writing for Textbroker and regaining momentum in my career, it doesn’t seem completely impossible to overcome, either.

They say the best way to pay off debt is to make regular payments on everything while going really hard at one particular bill. I haven’t quite decided which one to tackle first, though.

Career

Finish all currently open series. 2016 was all about regaining some lost momentum; 2017 is going to be all about closing boxes.

Right now, I have three unfinished series: the Comes in Threes, Not Just Any Love, and South of Forever series. While the Not Just Any Love series is actually just two companion standalones (Just One More Minute and the forthcoming Char/Amarie novel), the Comes in Threes series has been in limbo for almost four years.

I’ll be releasing the final South of Forever book soon, and then my plan is to get back to Quinn, Tara, and everyone else from Crazy Comes in Threes. I’ll be rewriting CCIT; I won’t be changing anything about the story, but I’ll be making some structural changes—that way I can pull off my master scheme. I’m super excited about what I have in store. More news on that soon!

Marriage

Go on one date every month. Thanks to the holidays, health issues, and financial stress, Mike and I haven’t been able to spend much time together lately. Our hot dates have recently consisted of doctors’ appointments and him helping me put pants on. So romantic. 🙄 Not!

Money is beyond tight, but I’d really like to do something every month—even if it’s just a movie night in. We’re both always busy, but I make sure we eat dinner together (unless he’s working), with no tech at the table so we’re really focusing on each other. Still, I’d like to do actual dates.

Last month, my Noni got us a gift certificate to our favorite sushi place, so we went to lunch after my rheumatology appointment. (Note to self: blog about that ASAP.) It was nice to get out and spend time together, and we have enough left on the gift certificate to do it again. Little things like that keep our relationship strong.

Family

Host at least one family dinner. Due to my arthritis, it’s really hard for me to pull off gatherings at our place. Not only is it physically difficult, but it also takes a major toll on my energy. The last time we hosted anything was Mike’s birthday party—in October. It was so nice to have both sides of our family all together, but I paid for it dearly in the days after. I always do.

Originally, we really wanted to host weekly Sunday dinners, but that’s just not possible. I’m slowly adjusting to my limitations, which means not pushing myself and accepting things for what they are. Still, I’d like to have at least one Sunday dinner this year; they were a huge part of Mike’s family when he was growing up, and it’s really important to him that the tradition continues.

My plan is to give Plaquenil and Prednisone some more time and, when the weather gets warmer, set a date.

Health

Find a treatment that brings pain down to a 4/10. I’m hoping Plaquenil is The One. I’ve accepted that I’ll probably never have a zero pain level again, but if my new normal could be a 4/10, that would be great. At that level, the pain is tolerable; once it gets to five or even six, it’s debilitating. Honestly, I’ll even take a five at this point; last Sunday, it got all the way down to a five, and I felt amazing. It’s been an eight lately, which is still better than a nine or 10.

But four is about my normal level when I’m not in a flareup. If Plaquenil can decrease the flareups and their severity, I’ll be happy.

I’d also really like a diagnosis more definitive than “it might be Lupus” or “it’s definitely enthesitis-related arthritis.” Right now, my chart has Undifferentiated Connective Tissue Disease (UCTD) as my diagnosis, which translates to “undiagnosed autoimmune disease.” It means there’s definitely something inflammatory and autoimmune going on, but my labs are inconclusive. There are two camps in rheumatology: one that relies more on symptoms to diagnose, and the other that relies more on labs. My rheumatologist falls into the latter, and so did my former rheumatologist. There’s nothing wrong with that, but for my own closure, I’d really like to know the name of the disease that has completely and irrevocably changed my life.

I may never get that. I may have to practice accepting that. Time will tell.

Passion

Write “writing through trauma” book as a blog series. I’d like to tell my story—and help others write through theirs. Writing has long been a huge part of my life. I’ve written my way through every major event, be it in a journal or weaving my pain into a novel. The most important writing I’ve ever done, though, were my trauma stories.

I’d like to teach others how to write through their pain. Eventually, I’d even like to lead workshops for local organizations who help sexual assault survivors, but I’ve got to start small. That, for me, means writing a how to book.

I’ve started several times. I keep getting stuck because I’m not sure how much of my personal story I should share; I don’t want to take away from the advice I’m giving, but I’d also like to show how writing through my own trauma helped me. I’ve decided to take my outline and the roughly 10K words I’ve written, and turn it into a blog series that can be later converted into a book. This way, I can get some reader feedback on it while I’m putting it together.

Stay tuned, because that will be starting very soon.


What are your goals for 2017? Let me know in the comments!

Bottoms Up! (Plaquenil, Day 1)

My new Christmas cactus, and my pillbox full of Plaquenil (December 1st, 2016).
My new Christmas cactus, and my pillbox full of Plaquenil (December 1st, 2016).

My goal for my rheumatology appointment this morning was to walk out with some kind of progress. Any progress. I just wanted to move toward getting my life back. That’s all I’ve wanted for the past decade.

On Thanksgiving, a week before my followup appointment with my rheumatologist, I’m so miserable I consider going to the ER instead of family dinner. Every joint in my body is stiff and agonizingly sore. The pain keeps me awake at night. I’m so stiff, my husband has to help me get dressed. I’m 28 years old and I was raised by strong women; I’m used to doing everything myself. I feel powerless. Mike feels useless. We go to Thanksgiving dinner under a blanket of defeat.

My sister-in-law is having her own health troubles. I want to help her and be there for her, but I’m nearly incapacitated. My mother-in-law takes her to the ER, and I stay behind with the guys to finish and eat dinner. While I’m taking my plate to the sink, my left ankle goes out.

It’s so sore, I can’t bear weight on it. I swallow back tears; surrounded by a bunch of tough guys, I don’t want to cry like a little girl. A well-meaning family member gives me a Percocet to get me through the rest of the day. It helps, but it’s strong; by the time I get to my grandmother’s, I’m in a haze and I hate it. My body doesn’t have to fight off pain anymore, so I can finally rest, but I struggle to stay awake during dinner.

My aunt brings me home early, and the second I get home, I start vomiting. I’m not used to medicine like Percocet. It’s too strong. I throw up for hours, on my aching hands and knees on the bathroom floor in front of the toilet. The pain comes roaring back, and I have to limp-run to the bathroom every half hour. By some miracle I make it to the toilet every time.

By the time Mike gets home from work, I’m dehydrated and exhausted. I probably should go to the ER, but I’m disoriented. Mike brings me ginger ale and I struggle to keep it down. I curl into a ball in bed and hope the morning brings relief.

I stop vomiting, but the pain and stiffness keep me in a haze of hopelessness.

I decide to unplug from the internet so that I can focus on my health, as well as work that I’ve fallen behind on.

It’s two nights before my rheumatology appointment, and I can’t sleep. My body is exhausted by pain, fatigue, and stress, but my mind is wired with anxiety. I’m worried that once again my appointment will end in disappointment, that I’ll once more feel brushed off, that I’ll still feel like I’m just spinning my wheels.

I try everything I can think of to fall asleep.

Cleaning, to work off that anxious energy. I do dishes, soak kitchen towels in bleach in a bucket, and fill my sink to soak cutting boards in bleach. I consider sweeping and mopping, but my body isn’t up to it. I’m tired all the way down to my bones. Even with pain medicine, my joint pain is agonizing.

In bed, I play Bejeweled on my iPhone to quiet my mind, and watch ASMR videos to help me drift off, but it’s useless.

I toss and turn all night, unable to get my body comfortable, unable to shut off my worries.

One day before my appointment, I wake up anxious. I want to tackle my To Do list; I have a lot of work to do but it will also help me get my mind off my pain and anxiety. Everything that can go wrong does. I spend hours trying to fix my antivirus; its firewall is blocking my internet. All I want to do is work off my anxiety, which grows by the second because I can’t fix my computer and I’m falling even more behind on my To Do list.

By the time I solve the issue, my fingers and wrists are so stiff and sore, I barely get any writing or any other work done. Instead of cooking the chicken parmesan dinner I’d planned, I make ramen and binge Buffy the Vampire Slayer on Netflix. I need a hero.

After dinner, I spend hours writing up a seven-page document for my rheumatologist. I define my goals, outline my medical history (completely healthy before this illness set in), list my symptoms and trouble joints, describe treatments I’ve tried, tally activities that are affected by my chronic arthralgia, stiffness, and fatigue, catalog various labs that have popped up over the past nine years. My hope is that, by laying all this out for my rheumatologist, he can piece together whatever it is that’s wrong. Going through the document makes me realize how very bad this disease actually is.

Before I got sick, I played on a city softball team. I was the catcher. I had to stop playing because I couldn’t move fast enough to make bases or catch balls.

Before I got sick, I worked multiple jobs and at one point even had my own web design business. I had to leave the workforce because, sitting or standing, my body couldn’t handle the demands.

After I got sick, I went back to school to become an elementary school teacher. I was seeing my first rheumatologist, Dr. Greco, and the medication I was on had nasty side effects. The pain and fatigue pulled me further and further behind on my studies; both my grades and GPA plummeted. My fellow students either ignored or made fun of me. A girl who I thought was my friend ditched me on our way to an exam, and started treating me badly. The stress of being sick and trying to get through school was too much on my body. I withdrew and never went back.

Those are only three of the things I’ve lost.

I print out two copies of the document—one for me and one for Dr. S—and prepare to go into battle the next morning. Once again, I’m fighting to get my life back. I’m fighting to advocate for myself, to be heard. To not be erased.

Right as I’m about to lie down, my hypoglycemia flares and my blood sugar plummets. Tramadol wears off and the pain comes roaring back up to a 9/10. I make more ramen. Midnight comes and passes. I lie down again and calm myself with ASMR videos and one of the same threes audiobooks I listen to every night. Eventually, I fall asleep, but the pain wakes me intermittently. I can’t get comfortable.

My mind starts to run through scenarios: what I’ll say to Dr. S, the kinds of questions I want to ask, the what-ifs. Usually I just sit with my anxiety, let the feelings in, and examine them. But I have to get to sleep so I can be fresh and on my game in the morning. I slam down steel shutters, bottling up my worries. But they leak in anyway.

Between the pain and anxiety, I barely rest.

The morning of my appointment, I wake up over two hours before I’m supposed to be there. The plan is to have enough time to sit and let my joints un-stiffen. Of course, nothing goes according to plan.

My alarm goes off but I’m foggy and my bones scream for more sleep. I set it for another half hour and drift off immediately. It seems like only minutes later my alarm goes off again.

I have to get up, or I won’t have enough time.

Even though I’m too nervous to eat, I make oatmeal and coffee. I eat half my bowl and drink a third of my coffee. My mouth is so dry. I take my morning medication—vitamin D and one of my two daily Tramadol—and slowly dress, do my makeup and hair, and gather my papers and planner. Mike is off from work, so he drives me. A few days before, I asked him to come into the exam room with me and fight for me, to back me up on everything I’m saying—to explain how he has to help me do simple things like get dressed, to parrot what I tell the rheumatologist. It’s a proven fact that doctors take men more seriously. Mike is skeptical, but agrees to help me advocate for myself.

I leave our apartment armed with my seven-page document and husband. The only weapon I’ve ever had are my words. On the drive over, I mentally repeat affirmations: I am strong, I will accomplish my goal of progress, I am beautiful, I can do this. I lift my chin while fending off doubts.

I’m still worried that my rheumatologist will brush me off again.

In the exam room, he gets right down to business. He remembers our phone conversation where I all but begged him to help me, to listen to me, to sleuth this out with me. He starts off by reviewing my last labs and our phone conversation about trying Plaquenil. I’d intended to start off by asking him if we could go over the last decade, but didn’t want to interrupt him. He sees my papers, though, and asks if I have something for him. I pass over his copy.

I explain that I thought it might be helpful if we reviewed everything. He seems surprised and impressed. So we do. He asks questions. I give him answers, referring to my document when the fatigue and brain fog set in and I can’t remember. We talk about how I have flareups and remissions, about how the stiffness and intense pain lasts hours in the morning and then I have a small window midday when it calms down, how I’ve taken Prednisone in the past and it helped kick my flareup both times.

Dr. S says he definitely doesn’t think this is Fibromyalgia, because of the stiffness. But he also explains that usually with Lupus, there are other markers. I only have the anti-dsDNA, so it’s difficult to diagnose. But there’s definitely something autoimmune going on. I tell him about how Dr. Greco, my first rheumatologist, explained to me that I’m on the very bottom of the bell curve; something is definitely brewing, but I’m right on the edge and it’s hard to tell what just yet. Dr. S says that’s exactly what he thinks, and that he wants to monitor how this progresses.

But he also doesn’t want me to be in so much pain, and to be unable to perform daily activities. I tell him that’s all I’ve wanted for the last nine years—to get some of my life back.

He decides to start me on Plaquenil, cautioning me that it could take up to six months for me to notice any difference. We both have to be patient, he says. He suggests I keep a diary: rate the pain, list activities I’m having a hard time doing, etc. That way we can track how well Plaquenil is working. I now take 200mg of Plaquenil, twice a day—400mg in total. On this, I can expect very low side effects; he said maybe one day of diarrhea. It’s nothing like Sulfasalazine—no headaches or metallic taste, and no liver and kidney damage.

He’s also got me on Prednisone for a few weeks, to help kick the flareup while Plaquenil starts working, since we know it’s worked in the past. I’m taking 10mg of Prednisone every morning. It’s a low dose, so I can expect less intense side effects. In the past it’s made me dizzy and sweaty, and made my heart race and kept me up all night. I’m to take it first thing in the morning, to lower the chance of it keeping me awake.

I thank him profusely. Along with this new DMARD, he’s given me hope.

Mike and I go to our favorite sushi restaurant to celebrate. They have a lunch special and I owe him money for the printer ink he bought me the other day. We reconnect over sushi and when I get my fortune, I’m delighted.

“You have had a good start,” it says. “Work harder!” This is heartening.

We head over to the pharmacy next. I go in without my wallet, because I’m only there to pick up my prescriptions and my insurance completely covers them, but when I walk in, there’s a display full of live Christmas cactuses. Their pink blooms are beautiful, and they remind me of my Biz Noni—who always had one. I can’t walk out of there without one. They’re only $3.99, but with my savings card I end up saving a dollar.

I walk out with all kinds of new hope in my hands, hands that can’t hold much these days but are so open to catch whatever tools life wants to give me to fight. Like I told my rheumatologist, I’ll do just about anything to feel better. I just need someone to give me a chance.

In the car, on the way home, I take my first dose.

Prednisone still tastes awful going down. I’d forgotten how bad it tastes. But the Plaquenil has no taste and, unlike the SSZ, it doesn’t leave a film on my hands.

It tastes like hope.


If you’d like to help, I currently have a GoFundMe open to help my husband and I catch up on our bills. You can donate here. If you prefer, you can donate through PayPal. Or you can purchase any of my books, which not only supports me but also my writing! Paperbacks coming in 2017.

All of a Sudden

My sister, Biz Noni, and me
My sister, Biz Noni, and me

Yesterday morning, I finally fell asleep somewhere around 6am after being up all night in pain. I woke up around 11:30am to a text from my mom, asking me to call as soon as I could. It was from around eight in the morning. Dread filled me; I knew something was wrong. Since I’d taken Tramadol so late, I was still feeling the side effects. Which is why, when I called my mom and she told me my sweet Biz Noni had passed away, all I could say was “Oh.”

Then it slammed into me.

I hadn’t seen her in a few months. She transitioned into a nursing home last year when her dementia started getting really bad. I visited her from time to time but wasn’t able to as often as I would’ve liked. I was planning on going to see her this week, since Mike is on vacation from work and I could take the car.

But it was too late.

I’ve been kind of numb today. I’m really sorry that I didn’t go see her sooner. I feel horrible about that. She deserved better. And even though I know that she knew she was loved, I still feel bad. Lots of family visited her on a regular basis, and she’d made friends in the home, so she wasn’t alone. I guess I just wish I could’ve told her one more time how much I love her.

Though I’m glad she’s not suffering anymore, it hurts so much to say goodbye. She was one of the sweetest, most stubborn people I knew. Some of the things she’d come out with had me in stitches. You’d think a white-haired ninety-five-year-old would be demure, but not my Biz Noni. She loved to bust balls and always played “The Matriarch” card whenever anyone tried to give her shit. “I’m The Matriarch,” she’d say, and that was that.

Biz Noni had a sweet tooth, too. The older she got, the more she looked forward to her desserts. We’d barely be done with Christmas dinner, for example, and she was already asking about dessert. I’ve decided I’m going to dedicate my bakery romance Just One More Minute to her. It’s only fitting.

I have so many good memories of my Biz Noni: her babushka on a cool night around the campfire; playing “office” and “doctor” in her living room with my sister and cousins; making cookies, cappelletti, and gnocchi in the kitchen with her and the rest of my family; watching black and white movies with her on TV…

I don’t really know what else to say right now. Like one of my cousins said last night, I thought she’d be around forever. She always had. She remembered everything up into her nineties, and then all of a sudden it didn’t. The dementia was so fast. I guess my mom is right, that it’s kind of good that the last time I saw her was when she was still doing relatively well.

I just wish I could’ve given her one last kiss on her sweet, soft cheek and told her I love her one last time.