My Quiet Battle with Lupus

I feel great.

I know it’s backwards to write about a disease when I feel great, but feeling great seems so foreign now, I’d almost forgotten what it felt like.

I have Lupus.

Lupus is an auto-immune disorder which means my body doesn’t get along with itself and decides to attack different systems in completely random order that–ironically–fits well with my random, spontaneous personality. 

Speaking of personality…

In spite of having a blog, facebook, website, twitter, and a whole other host of social media platforms I interact with daily, I’m actually a private person. Extremely private. I’m borderline hermit. I love talking to and with people, but I keep a lot deep down. I live inside my head. Usually, my hubby is the only one who really knows what’s going on. (Poor guy). Which is why I haven’t talked about my disease before on here or any of the other places. But…for some reason I feel the need now.

I have Lupus. It stinks. It’s annoying. But oh well.

I think I have a mild case of it. Most days I function well–at least before 6pm. To look at me, you’d never know anything’s wrong–also assuming you see me before 6pm; after that, I turn part-zombie. I could list off my various symptoms that have come and gone over the last 15 years, but I won’t bore you.

But right now I feel great. And I’ve felt great for about the last month (*knock on wood).

Why have I felt great?

I HAVE NO IDEA!!!!

That’s the most frustrating part of the disease. I’ll feel great for a few months, then SMACK. It’s like I’ve been hit by a semi and need six months to recover. A new part of my body misfires in weird and mysterious ways (like the time my calf muscle twitched every few seconds for a month straight–drove me nuts!).

I spent the better half of this year battling with my eyes. Most days I could see fine until about that magic hour of 6pm. Then my eyes stopped wanting to focus. Technically they could focus, they’d just make me work for it. Driving at night was tossed out the window. Contacts were abandoned. Eye drops of every size and shape were used and abused to get me through the day.

New glasses
New glasses in February–Don’t I look thrilled?

What’s strange is that even though the symptoms revolved around my eyes, the rest of me was exhausted, too. Like sit-on-the-couch-all-day exhausted. “Worn out” is probably a better description. I felt like I was nine months pregnant only without the basketball belly and cute baby on the way. Supposedly I had “acute dry eyes.” How the heck does that make the rest of me wanna sleep twelve hours a day?

Anyway, the eyes have cleared up. Hooray! Was it because of all the eye drops? No. Because of the extra sleep? Doubt it. Doctor visits? Sadly not that either. They never could figure out what or how or why other than their standard answer of:

“It’s probably just auto-immune.”

(I can’t tell you the amount of times I’ve heard that phrase. I loathe it. FYI, if you’re in the medical field, don’t take offense to what I have to say here, but I’m SO done with doctors. It’s not their fault. It’s my body’s. By the time I get an appointment, test my symptoms, and get a follow-up appointment to discuss everything, my symptoms have changed. Again. I’ve decided that Lupus is the Bermuda Triangle of medicine. Everyone knows something strange is going on, something with bad consequences, but nobody can quite explain how, why, or what to do to stop it.)

Anyway, I hadn’t realized how lousy I’d felt, how worn down I’d felt, or grouchy I’ve been until this last month of feeling good. (*knocking on wood again).

Honestly, feeling great is a little depressing. Backwards, right?

Here’s why…

Lupus

My husband keeps saying, “I really like it when you feel good.” He keeps looking at me with this sad, empathetic expression. The kind of expression he should give me when I feel lousy, only he’s giving it to me now. Because he realizes what I do. Lupus has worn me down. It’s affected me more than either of us realized. 

Anyway, this isn’t a pity party. I promise it’s not–or it wasn’t supposed to be. :)

Of all the things to struggle with, I’m fine with this one. Most of the time, it’s annoying more than life-changing. Mild case. Hopefully it’ll stay that way. 

Why I wanted to write is to let you know that everyone has struggles. Even if we don’t see them, they do. I’m sure you’ve had your fair share. Sadly, struggles are a part of life. It stinks. It’s rotten. But oh well.

There are blessings from my disease, though. For one, it’s given me ample time (and excuse) to sit at my laptop and type away. I’m currently working on my sixth novel. Honestly, I’m not sure I would have written that many if I felt great all the time. Some months, all I feel like doing is hanging out on the couch with my laptop and a blanket. It’s a blessing that I’m able to do that more often than not.

For two, this has made me appreciate the joys in life, the friendships of others (who rally around me when I feel like garbage), my kids and my husband (who have endured years of whining), and the fact that happiness is a choice. Some of the happiest people I know have the largest struggles. It’s a choice. It’s a choice. It’s a choice.

That’s my goal in life. To be happy amidst . . . whatever. Through the good times–as depressing as they can be :) –and the bad.

Last Christmas I watched the kids open all their presents from a beanbag. So far this Christmas is shaping up to be much better. I hope and pray my body will keep cooperating, but if not, if the next strange set of symptoms comes my way and knocks me off my feet, I hope to still be happy.

No.

Not hope.

I will be happy. It’s a choice. I’m committing to it. Which is why I just wrote about it in my blog. Hold me to it, people.

I hope you guys can find happiness amidst your struggles, too. It’s a choice. It’s a choice. It’s a choice. Maybe if we tell ourselves long enough, we can make it stick. ;)

Viktor Frankl

Love you guys! Thanks for all your love and support. You guys are the best!

(Out of curiosity, any of you out there with Lupus? Know anyone with Lupus? Have any advice for me? Leave a comment.)

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Author: Rebecca Belliston @rlbelliston

Hopeless romantic and author of CITIZENS OF LOGAN POND, SADIE and AUGUSTINA. Music nerd and composer of RELIGIOUS and CLASSICAL-STYLE music. I live in Michigan with my husband and five kids.

16 thoughts on “My Quiet Battle with Lupus”

  1. yup, i had no idea, and i am so sorry. it’s so frustrating to have your own body rebelling against you! I recently discovered that i have these wacky food allergies. i had stomach issues, but i never noticed anything consistent. then i had a reaction to some foods and had to stop eating them. all the sudden i discovered that my monthly illnesses (from breathing issues to stomach flu to head colds) have gone away. dear tomatoes, potatoes and peppers i will miss you, but i am so amazed that i haven’t been sick in a couple of months- i was always sick at christmas time, which stinks for singers, right?! things are looking up for me right now too. hopefully i will be able to continue the upswing, but it is frustrating to know that i suffered through years of illness needlessly. love you becky! keep your head up, and let us know if you need anything.

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    1. Thanks, Amy! Sorry about your issues. Food is such a strange thing. I’ve completely altered my diet too, and it helps a ton. The stuff we eat can affect us so much, I had no idea. Bummer on tomatoes, potatoes, and peppers! I’m glad you’re feeling better. I’m crossing my fingers to keep up the good streak for a few more weeks at least. :)

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  2. Thanks so much for sharing…I actually have a similar story but unfortunately one without a specific name….it’s auto-immune-something-or-other…which can make it harder to explain to people, but after 5 years of mostly downs, I’ve entered into an up period, just like you…and my husband prays with gratitude for health and pleads for a continuation of health…and it breaks my heart to know how much this has affected him and my family…but slowing down has been a blessing to me also and I thank God for teaching me how to embrace this new lifestyle and find joy despite the pain and fatigue. I hope you enjoy your up-time and make some lovely memories with the family! Merry Christmas :)

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    1. Yeah, the whole auto-immune thing is really hard to explain. Sorry you’re battling with it, too. Hopefully you’re getting good medical care–and you have doctors who can help. I’m glad you’re feeling better right now. Here’s to hoping we both keep up our good streak. Thanks for your note. Have a great Christmas!

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  3. Glad you’re feeling better. And it’s so true that some of the happiest people I have met had the greatest struggles of chronic pain or disease of some kind. It makes me admire them that much more and be inspired to be a better me. So hang in there with your affliction. Enjoy the good times like now…and trust that God is refining you into a stronger person during the bad times. You are my hero for enduring well and sharing your story to help others during their own struggles.

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    1. Thanks for your kind words!! The more I watch other people struggle and smile, the more I want to be that kind of person. My family wants me to be that person too. ;) I hope you and your family have a great Christmas!

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      1. I know. I want to be that happy person too, but find I’m a baby when it comes to pain (especially in my head). I don’t know how my grandma smiled so much when she hurt for over 50 years. It would be nice to pick our trials, wouldn’t it? But then I would pick the easy ones and not grow as much.

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  4. Nothing on Lupis. Sorry. But I recently watched “Silent Night” on BYU TV and saw Belliston in the credits. Missed the first name (except that it was a male name) and I missed what he did. Any relation?

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    1. I hadn’t heard about “Silent Night” until you mentioned it. I just watched the trailer and now I want to see it. It looks amazing. I’m not sure which Belliston was involved with it, but I’m sure we’re related somehow. I’ve never met a Belliston that we’re not related to somewhere down the line. It’s just one of those names. I’ll have to do some digging to figure out which person it is and see if I know him.

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  5. Well sheesh. How lame am I…I’ve known you for many years and never knew this. I’m sorry you struggle with this, albeit so stoically!!! Please be sure to take care of yourself!!!

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  6. Rebecca,
    Thank you so much for making this blog.
    I feel like I can relate is SO many ways. I have Chronic Fatigue Syndrome.
    Thanks for taking the time to write this. I will be a follower!!! Your post brought me to tears.
    I have so many bad days… many sick days… some good days… I just want to be ME and normal and to take care of my family and basic needs.
    Hang in there! I’m right there with ya!

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    1. Sorry you haven’t been feeling well. It wears you down, doesn’t it? It helps to know other people understand. We can go through it together. Thanks for your kind words. Take care of yourself, and have a wonderful Christmas!

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  7. I didn’t know you had Lupis. That is so rough! Good for you for having a good attitude about it. I think what you say is true–we all have struggles. Some are easier to hide than others, and some people are more open than others. Life isn’t easy. But it can be good.

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