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.

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As if that’s not all bad enough, most of the time our doctors don’t even know what to do with us. I’ve had physicians suggest I see a psychiatrist, ask me what I want them to do for me, flat out tell me there’s nothing they can do… The list goes on. When you have cancer, you see an oncologist; there’s no such thing as an autoimmune disease specialist, which is a damned shame, because there are a lot of us and very few physicians who can effectively diagnose and treat us.

Thankfully, I wound up with Dr. S, who’s been amazing. If he ever leaves the practice, I’m going with him—even if I have to follow him to the North Pole. It’s that hard to find a good doctor who can roll with the punches of an autoimmune disease; doctors don’t like medical mysteries, because they’re not cut and dry. Hell, I don’t like them either.

Autoimmune diseases are just plain weird, and living with them is weird. Still, I keep on trucking, because I’m too stubborn to lie down and quit. I’m not too stubborn, though, to lie down and rest once in a while.


Do you have a rare disease? What are some weird things about it? Let’s commiserate in the comments below. ♥

I’m a Flu Magnet

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I’m 99.9% sure I have the flu again; my eyeballs hurt, I’m exhausted, my skin feels like it’s on fire, my muscles ache in places I didn’t even know I have muscles… I basically slept all day yesterday, went to bed early, and already I’m ready for another nap. I’m totally okay with that.

Apparently this year’s flu shot didn’t include the A strain flus. Plus, because I’m on Plaquenil and Prednisone, my immune system is a bit, well, nonexistent.

I don’t even know how I got it this time. My friends and their baby have it, but I haven’t been near them specifically because I don’t want it. I probably got it when Mike and I went grocery shopping, and he somehow evaded it.

Seriously. Every time I go out in public, I get the damned flu.

On the plus side, our state tax return came in, which means we can afford to both be down and out.

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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The Pain Isn’t the Worst Part

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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.

They Don’t Know What to Do with Me

photo-on-11-22-16-at-10-29-pm-2TL;DR: My primary doctor’s office doesn’t know what to do with me. Basically none of my doctors do.


Today I went to see my primary for a followup. In October I was told that I now have to come in every time I need a refill for my Tramadol (opioid painkiller that I’ve been taking for my joint pain for about five years). I also got a bit of a lecture on opioid addiction, which I know they have to do but, yeah. This after I had to jump through hoops to get the refill in the first place.

Anyway, I’d scheduled today’s visit when I got my refill in October, but I also wanted to come in to show them my swollen thumbs. Every time I try to take a picture of them, it doesn’t show up on my crappy iPhone 4 camera, but both of them are swollen at the joint. Late last year, my rheumatologist Dr. Memet said I have enthesitis-related arthritis, which means my tendons are inflamed where they connect to my joints. This explains why my inflammation markers in my labs are always negative. After that, she diagnosed me with Reactive Arthritis, but when she left the practice, my new rheumatologist canned my diagnosis—until my anti-dsDNA came back positive. Right now we’re looking at possible Lupus.

I see Dr. S (my rheumatologist) on December 1st, but in the meantime really wanted my flareup and swollen thumbs on record. (My PCP and rheum are both in the same medical group, so they use the same patient portal.) My appointment was with the APRN at my primary doctor’s office. I went in with a two-page list of concerns, plus pictures of where I have joint pain in my chest. (Fun fact: There are joints everywhere. Everywhere.)

To be fair, the APRN was nice and she listened. But… she admitted she doesn’t want to mess with me because “there’s so much going on.”

I showed her my thumbs and we discussed my other trouble joints. I also asked her about Tramadol. A friend with a slipped disc is in pain management and her specialist explained that Tramadol doesn’t work for pain unless you stay on top of it. Meaning, if you take a dose at the end of the day when the pain is already high, like I do, it ain’t gonna touch it. I’ve long suspected this, so it was nice to actually “hear” a doctor confirm it. I asked my APRN if there was any way I could split up my 100mg dose throughout the day. She instead urged me to go to pain management.

I have… doubts about pain management. For one, I’ve heard a lot of horror stories. And… I don’t want anything stronger than Tramadol pushed on me. I’ve tried Percocet and other things and, yeah, they worked really well for the pain, but they knocked me out or made me super loopy. Either way, I couldn’t function. I like functioning. I have writing to do.

Another concern I have is that very few pain management clinics in the state take my (state) insurance. My friend has the same insurance and had a lot of trouble finding a place. She ended up with a clinic an hour away. I can’t swing that because Mike works full-time and we only have the one car. Family members have offered me rides to appointments but honestly I feel bad about asking them to take me that far, especially when pain management wants patients to come in often.

Maybe this sounds like excuses.

Anyway, I expressed all my concerns to my APRN and she said there was one in Southbury. Alas, they don’t take my insurance—but she did find one closer to me than an hour away. Just not as close as Southbury. 😂

Honestly, at this point, I didn’t feel like I had much of a choice. My rheumatologist has suggested pain management before (after grilling me about my Tramadol prescription), and last time I saw the APRN she wasn’t too crazy about me and Tramadol, either. It seems like more and more doctors just don’t want to mess with painkillers. Which is a shame, because when used correctly, they’re extremely beneficial to chronic pain patients. Plus Tramadol is honestly the baby aspirin of the painkiller family. No one is going to pursue it to get high. But I digress.

So, I’m going to pain management. Hold me.

To be fair, my friend had the same fears at first, but she really likes her clinic now. They’ve got her Tramadol dose to a point where it’s helping, and she’ll be having surgery for her neck soon. She’s very happy with the care she’s getting, so hopefully this will be a blessing in disguise.

I also talked to my APRN about my GI symptoms. They’re… pesky. And embarrassing, so I’ve never mentioned them here before. Nor have I discussed them in-depth with my doctors. But I bit the bullet and flat out told her. She said it sounds like IBS, which I’ve been wondering. The kicker is, when I asked what we can do about it, she said she doesn’t want to mess with my body because “there’s so much going on.” And laughed.

I was not amused.

Honestly, I just feel like I’m always being passed on. No one wants to help me. They’re either too busy or don’t have the expertise, so they hand me off. And nothing ever gets taken care of.

This has been going on for almost 10 years.

I had to fight for a cortisone injection in my toe. I eventually got it, but I had to jump through hoops. Cortisone injections are standard procedure for patients with arthritis. My grandmother gets them all the time. I’m pretty sure my dad got a couple in his problem hand (he has tendon issues). But when I walk in, it’s always “You’re too young for all these problems.” Like it’s somehow my fault, or like I’m making it up.

I eventually got the shot, and you know what? It worked like a charm. It wore off, and when I mentioned so to my APRN last time and said I need another one, she said I’m too young and laughed. Like this is all one big cute joke.

Why, today, I couldn’t start Prednisone to fight the inflammation, or at least get cortisone shots in my thumbs, is beyond me. I was flat out told they would only treat my IBS when it’s flaring—even though I said I have symptoms all the time—because they don’t know what to do with me.

They never do.