What Does It Mean to Have Undifferentiated Connective Tissue Disease?

Photo by Vladislav Muslakov on Unsplash

In December 2016, I was diagnosed with Undifferentiated Connective Tissue Disease (UCTD). I’d been suffering from symptoms for a decade, and the diagnosis was a relief. Finally, I could start some kind of treatment and maybe get some of my life back!

There are a lot of misconceptions about UCTD, and autoimmune diseases in general. Part of the problem is, we don’t know a whole lot about them. We do know that the immune system gets confused and starts attacking healthy tissue. This can cause a lot of problems.

My disease, UCTD, is like the center of a three-way Venn diagram, with Rheumatoid Arthritis, Sjogren’s Syndrome, and Lupus the three overlapping circles. UCTD is at the center, meaning people with UCTD have symptoms from all three of these awful diseases.

It’s the best of both worlds.

The “undifferentiated” part means that the patient is presenting symptoms from all three diseases and their blood work doesn’t point clearly to any one disease. My symptoms and labs lean more toward Lupus. I have:

  • joint pain and stiffness
  • fatigue
  • dry eyes and mouth
  • hair loss
  • numbness and tingling
  • anti-double-stranded DNA (anti-dsDNA)
  • positive antinuclear antibody (ANA)

Sometimes I have bladder and GI issues, but it’s unclear whether they’re related.

People with UCTD sometimes go on to fully develop one (or more) of these diseases. Sometimes UCTD just stays put. It can also go away entirely. My rheumatologist is monitoring me for kidney involvement, which is how we’ll know if my UCTD is developing into Lupus.

In all likelihood, my UCTD is here to stay; I’ve had it for over a decade now and it only seems to be getting worse, not better. Since my labs have been stable, though, it’s also likely that I won’t develop Lupus.

This doesn’t mean that UCTD is at all mild. Though it doesn’t involve organ damage, the joint pain and other symptoms can be debilitating. When I’m flaring, I’m mostly homebound, or even bedridden.

To treat my disease, I take 200 mg of Plaquenil and 500 mg of Naprosyn twice a day. I also take Tramadol as needed. My rheumatologist is trying to avoid putting me back on Prednisone because its long-term side effects are pretty nasty, and I was just on it for nine months. Unfortunately, I’ve been flaring since I stopped Prednisone completely. If the Naprosyn doesn’t help my joint pain and stiffness, we’ll try something else.

It’s also important for me to eat right, get plenty of sleep, manage stress, and exercise as much as possible.

Even though having UCTD has been quite the adjustment, I’m learning to live around it. I listen to my body, resting when I need to and being careful not to overdo it. I’m also lucky to have Mike, who cares for me so tenderly and makes me laugh even in the worst of it.

The Real Cost of Chronic Illness

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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.

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. ♥

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.

Fuck Arthritis

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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. 💜

Hello, 2017

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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!

I’ve Got the Damn Flu

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The other day, right after I finished bitching about my “super bug” here, I found out that my girl friend, her husband, and her youngest daughter all have the same thing—killing my theory that this was just my immune system being an asshole. My girl friend said she and her husband were convinced it’s the flu, which made me stop and think. I’d said several times to Mike that this felt like the flu. Could it really be, even though I’d gotten my flu shot?

For hahas, I looked up flu symptoms and yup, it’s the flu—to a T. I had to come out of denial and surrender to the enemy. It was way too late for Tamiflu, so I’ve had to just ride it out: DayQuil severe, Gatorade, ginger ale, and rest. I didn’t bother with seeing a doctor, because there’s nothing they can do for me.

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12 days in, I’m still exhausted. Today I have a bit more energy, so I’ve mostly been reading Let’s Get Visible by David Gaughran on my iPad and doing some administrative things with my books (categories, keywords, etc)—when I have a bit of energy. The tiniest things wipe me out, which sucks. I’ve said “This sucks!” more times in the past two weeks than I have the entire time I was a surly teenager.

I didn't put up our tree this year (flareup + flu = no energy), so this is our tree. 🎄 Happy holidays!

A post shared by Elizabeth Barone (@elizabethbarone) on

I’d planned a blog hop, which pretty much got blown because almost 50% of us have the damn flu. I’d also planned on finishing beta reading for my CP, which I’ve been doing in tiny bursts. And I’d planned on re-outlining SOF4 this week, but my brain is mush, I tell you.

Damn you, flu! *shakes fist at sky*

Mostly, I’m trying to save myself for Christmas Eve and Christmas Day. I mentioned in a previous post that Thanksgiving was basically a bust for me, so I’m determined to enjoy Christmas.

I’m not good at resting. I’ve always been a go-getter, so one of the things I’ve struggled with the most since getting sick in 2007 is just resting. I’m stubborn and impatient, so sitting still is not my forte. I’m absolutely sick to death of Netflix right now, so reading marketing books is a compromise. And even then, I can only do it in bursts because brain fog.

Just writing this blog post will cost me—which feels pathetic to me and not many people understand how this can be. But that’s the thing about autoimmune diseases and chronic illness in general; the invisible illness takes such a toll on your system, it’s exhausting. Throw in an illness like the flu, and you’re microwaved zombie.

You’d think, after almost 10 years, I’d be used to this by now, but no. I still hate it, I still get frustrated with myself, and I still stubbornly try to push my body. But the harder I push myself, the more I pay for it after.

The good news is, the flu won’t last forever, and the Prednisone/Plaquenil cocktail I’m on now should help with the pain and fatigue. Granted, it’ll be about six months before I notice any real difference. In the meantime, I need to practice patience with myself—which has been a theme in my life.

I’m getting there.


Need to get in the holiday spirit? I’ve got goodies for you!

Happy holidays!

The Bug That Won’t Go Away

When you’re autoimmune, you’re also immunocompromised—meaning that because your immune system is confused and attacking healthy cells, it gets ultra confused when you get sick. Sicker, in my case.

When the average person gets a cold, you might be out of commission for a day or two, depending on the cold. Usually within a week you’re back on your feet, though. When I get a cold, it also sends me into a flare: my joints start hurting (or hurt even worse than they already were); the stiffness really sets in; my fatigue knocks me on my ass twice as hard. It often lingers for weeks; I might as well have the flu.

It’s fun times.

Usually I can power through, but this past week I’m getting my ass handed to me by some super bug.

It’s supposed to start off as a scratchy throat, morph into a bit of a throat cold, kick you with some fatigue and brain fog, and then finish you off with some diarrhea—all with a fever. Everyone else had this thing for a day, a day and a half tops. Me? I’m on nine days and counting.

ED: So I checked in with my girl friend; she, her husband, and her daughter all have the same symptoms. We’re pretty sure we all have the flu. I’ll cut a bitch if I miss Xmas dinner.

It won’t go away.

Yesterday I started to feel a tiny bit better; the fatigue lifted to my “normal” chronic illness fatigue level. That I could handle. But then, as if I was in a game of Mortal Kombat, the bug screamed out “FINISH HER!” and pummeled me with diarrhea—all freakin’ day.

I hoped that today I’d start feeling better, but now I’m back to no energy.

Just when Prednisone was starting to help with my joint pain. *sighs forever*

I mostly missed out on Thanksgiving because of my UCTD flareup; if I miss Christmas dinner because of this rando’ sickness, I’m gonna choke someone.

I also have cabin fever—bad. Like, I’m totally stir crazy, in a totally insane way. Last night I was singing to the tune of “Don’t Stop Believin’.”

Just a hungry girl
Living in a hungry world

What? Prednisone makes me ultra hungry (though yesterday I only had four meals instead of my usual five).

I’m not even exaggerating here. I’m officially a Hobbit.

A sweaty, feverish, stir-crazy Hobbit.

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