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.

via GIPHY

The Pain Isn’t the Worst Part

via Unsplash

The worst part about this autoimmune disease isn’t the joint pain. Most people my age without children are out living it up: drinks at bars with friends, casinos to celebrate birthdays, rock concerts just for the fun of it, hiking in the fall. All of these things I can’t really do anymore. Very rarely is it that I have the energy or feel physically well enough to participate in, well, life.

This weekend is a perfect illustration.

Right now, I’m in a flareup; even though I’m on medication, it doesn’t completely get rid of the fatigue and joint pain. It also doesn’t help that I’ve got a cold on top of the flareup. (Yup—the one-day sickness that everyone else had has morphed into a full-fledged cold for me.) I’m exhausted. Plus, between painsomnia and now being sick, I haven’t had a good night of sleep in a few weeks. Still, on Friday I pushed myself to go to my family’s annual girls’ cookie baking date.

By the time we finished, though, I was exhausted. The cold had moved south; it felt like I had a frog in my throat and an elephant sitting on my chest. I was supposed to go to a surprise birthday party for a family friend that evening. The problem was, I knew if I pushed my body and went, I’d definitely be useless all day Saturday.

And Saturday—today—is the second launch party for Phat Lip, the art magazine that my husband is a partner in.

I missed the first launch party because, you guessed it, I was flaring and didn’t feel well enough to go. I never feel well enough anymore. I know Mike doesn’t resent me for it, but I can tell it bums him out that I barely attend his events. It bums me out.

Before the launch party tonight, we’re supposed to go to my parents’ for a homemade pizza night. And with the way I’m feeling right now, I doubt that I’ll make it to either gathering. The cycle will start anew.

Mike will go out without me, and I’ll stay at home lonely and missing out.

I always have to choose: between sick or sicker; between washing my hair or cleaning my toilet; between getting much-needed rest or getting work done; between participating in life or maintaining the tiny bit of health that I have. The best metaphor I’ve ever heard for this is Christine Miserandino’s spoon theory.

So many people don’t get it. Those that used to text me to make plans stopped trying. I’m flaky, cancel-at-the-last-minute girl. Others rib me for never seeing me. I’ve even been guilt-tripped several times. Thankfully, there are two people in my everyday life who truly do get it, and that’s only because they too have chronic illnesses.

The holidays for me are the hardest, because I just can’t do the house hopping thing. I don’t get to connect with much of my family and friends. This time of year is rough in general, because the cold weather, my flaring body, and my compromised immune system keep me holed up. I miss out on everything, and I can’t risk pushing through, because if I do I’ll pay for it for days afterward.

But it seems to me that there’s an even greater price, one that I can’t seem to recoup.

That—the missing out—is the worst part of being chronically ill.

Who Wears Short Shorts? (Plaquenil, 2 Weeks)

It’s been two weeks since I started Plaquenil, the DMARD that will hopefully get my undifferentiated connective tissue disease under control. (That’s just fancy doctor speak for “undiagnosed autoimmune disease.”) I’ve also been taking Prednisone, a steroid. It’ll take up to six months for me to notice any real difference on Plaquenil, so the improvements I feel are all thanks to Prednisone.

Already my morning stiffness—haha—is down by like 90%. I’m still stiff, but I can move, which is amazing. When my alarm goes off, I don’t have to lay in bed for an hour before my body will cooperate. I now usually just lay flat on my back for a few, because my lower back has been killing me lately—especially when I first wake up. Once I’ve taken my morning dose of Prednisone, though, things start to calm down.

I’ve had minimal side effects with Prednisone. I’ll get a couple hours of hot flashes, but those go away. It doesn’t keep me awake at night, either (though I have plenty of painsomnia to keep me company). Usually, once it kicks in, I’ll change into shorts and a tank top—I kid you not. It’s been like 20°F outside and I’m wearing shorts in my house. (That’s -7°C for my non-American friends. Brr!)

These past couple weeks have been relatively smooth sailing. I even got back into a human schedule; I’ve been trying to be in bed by 10 p.m. and up by 8 a.m. Getting up is easy. I have so much work to do—that I’m excited about—and can actually get out of bed, that I can push aside any fatigue. The sleeping part… not so much.

Once Prednisone wears off for the day, the pain comes rushing back in. Plus I may have pushed it a couple times these past two weeks. Last weekend, I helped with my godson’s birthday party. We had 20 kids. 20! It was insane. I also ran after my littlest godson, who asked if he could go to the car, then the poor kid went the wrong way. He was technically doing right. We just didn’t consider that we all moved the cars around and that he might get confused. So Auntie went tearing after him in a total panic (even though my goddaughter was already almost to him). Talk about an adrenaline rush! Which I promptly paid for.

Still, it’s kind of cool to know I can still run; thinking about having kids always freezes me up, because I’m a little scared I won’t be able to properly care for them. Well, adrenaline is my best friend! If I do have kids, I’ll be just fine.

I did yoga the other night—the easiest, most gentle three poses I know. Well, I don’t know whether it’s the super cold temperatures or what, but my joints did not like it. My joints have always snapped, crackled, and popped my whole life, but it doesn’t usually hurt. Well, these past few days, it’s been agony every time. And within minutes of my little yoga sesh—which I was so excited about, because I finally felt physically up to doing it—I was deeply regretting it. My hips, knees, and lower back were screaming. And making sounds I’ve never heard! So, suffice it to say, I’ll hold off a bit longer before I get on the mat again.

I’ve also come down with some kind of cold thing. The most annoying part about being autoimmune is that I get every sickness double. Meaning, if I get a cold, it knocks me on my ass. It also usually attacks my joints. It’s like my immune system gets ultra confused and goes completely haywire.

Thankfully, it isn’t too bad. My joints are actually relatively okay. It’s my throat that isn’t having fun. I’m also ultra-fatigued, and kinda wandering around in a cloud. We all got sick after the party, and my poor goddaughter was miserable the other day. At one point she said to me, “I think I took your suggestion and made ramen, but I don’t remember.” Now I understand why; yesterday, I was all kinds of foggy. I was still able to get some work done, though, and today I plan on tackling even more. My couch is my other best friend; I just pull up the recliner, put my MacBook Pro on my lap desk thing, and work in comfort. The recliner keeps the pressure off my lower back, hips, and knees.

Honestly, I’ve been pretty content lately. That’s probably a whole other post, but I just feel very grateful for the way my life is. I’m still going easy on my wrists. Instead of doing any writing, I’ve been working on administrative things (like my annual inventory, which needed to be done anyway). I’ve also been writing for Textbroker, but limiting myself to one article a day for now. (Textbroker is a freelance platform for copywriters; I can look through all of the assignments, choose what I’m interested in, write the article, and get paid within a couple days. The pay isn’t the greatest, but it’s working out perfectly for me and my situation—plus I’m earning extra money without leaving my home.)

Lately I’ve been missing social media, so I don’t think it’ll be long before I’m back. However, I’ve decided that when I do come back, I’ll be limiting myself to about an hour a week. I have to rest my wrists as much as possible, and it’s also been really nice to take a break from all the negative headlines. This is also a whole other post, but I’m an empath and need to practice lots of self-care so that all the bad news of the world doesn’t completely rip my heart to shreds. I accidentally heard about Aleppo and I’ve been intermittently sobbing ever since.

All in all, though, I’m very optimistic that Plaquenil and Prednisone are going to help me. Unfortunately I can’t stay on the Prednisone for long. I see my rheumatologist next week, so I’m sure we’ll discuss that then. From experience, I know that within a couple days of stopping it, the flareup is going to come raging back. But I have faith that Dr. S will take care of me. I’m in good hands—especially after advocating for myself.


In case you missed it, the Just One More Christmas holiday novelette starring Matt and Rowan is now available! Read the first part here, then grab your copy for only $0.99.