what it’s like to have Lupus.

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Friends, I’ve been missing for a few days. Not because I don’t love you, or blogging, but because I’m having a hard time functioning right now. One of the best things about blogging {for me} is that no one can see when I’m sick, well, tired, happy, in my pajamas, in bed, or at my desk sipping {another} cold Diet Dr. Pepper. I can conceal when I’m not feeling up to snuff, which I kind of love because that’s pretty often.

I have this crappy, rotten, stupid, frustrating disease called Systemic Lupus Erythematosus, a.k.a. Lupus. At my house we call it Stupid Lupus. Because, you know, it rhymes and I have to make things fun for my preschooler!

Anyway, here’s how I look with Lupus.

Here’s how I look when I’m in a ton of pain and can’t get out of bed. Are you ready for it?

This is the problem. If I were in a wheelchair {which has happened on occasion} people give me sympathetic looks and say, “well aren’t you brave!”. I don’t want sympathetic looks or comments about bravery. And the only thing wheelchairs are good for is getting to the front of every line at Disneyland.

Here’s how it feels to have Lupus, even when you can’t see it on my face or on my hands, or in my joints:

I can’t get out of bed to feed my children in the morning. They both learned at an early age to fend for themselves in the kitchen. It’s not a matter of *trying* a little harder, it’s not a possibility.

My day-to-day pain, on my best day, feels like a really rotten flu. I ache. I hurt. I want to stay in bed and pull the covers over my head ’till it passes. I have zero energy, I feel like I’m walking through mud up to my neck. I can’t remember anything, my brain is completely muddled. That’s a regular day.

On my worst days, when I’m in a “flare up”, when my disease is really active because I’ve traveled too much, done a little too much home improvement, or because Stupid Lupus feels like it, things are pretty bad. I have so much pain I can’t concentrate on anything beyond getting past the moment. My hips, my shoulders, my ribs, the connective tissue all over my body, my feet, my neck, they all hurt like a combination of grinding, aching, and being run over by a train.

I can’t really describe it beyond the fact that I can’t function. It’s impossible to get out of bed, get showered, get dressed. It’s hard even to lie in bed and watch bad t.v.; all I want to do is get it over with. It’s not possible to do a mental exercise of “mind over matter”, the matter wins.

That’s the way it is, friends. I don’t need sympathy, but I wanted to share a little behind-the-scenes of my life. If I sometimes miss a day or two posting, or talk excessively about my obsession with pop culture, it’s because I’m busy coping, trying to get my head above water so I can get to the other end of the tunnel.

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Allison

Well, hello there! I'm Allison Czarnecki, founder + editor of Petit Elefant, a blog all about style on a budget for every part of your life: style / home / travel / family. We do a lot of how-to beauty + style tutorials, travel posts, easy recipes, crazy home remodel projects, and cool (yes, cool) DIY crafts you'll totally want to try. I'm super happily married (to a hot Polish immigrant) and am the mother of two kids, a daughter and son, all of whom are featured here on the regular. We live in the country but we're a little bit rock + roll. Welcome!

62 Comments

  1. Sarah :

    Thanks for sharing. I know its personal. I know a couple people with Lupus but didn't know much of how they felt. Thanks for the insight. Too bad there isn't a magic pill to fix it right?

  2. Jill :

    i was diagnosed with lupus at the age of ten. i can empathize with your aches and pains. it really is a rotten disease…

    fortunately, mine's in remission…and i pray yours will do the same.

    stupid lupus.

    i think you're pretty awesome though!

  3. Kat :

    You bluff it well. You are amazing. Let me know if I can ever do anything for you … feed the horse *ahem* entertain the kiddos, etc. I would be happy to help.

  4. The Dragonfly :

    Wow. I had no idea. And I think that might just be the point of your post with the gorgeous pictures of you – we have no idea. My best friend's mom has Lupus and I do know that it pretty much bites. I'm sorry you have to deal with it. But I'm glad for your candid honesty.

  5. PMG Smith Family :

    Thank you so much for posting this. My uncle was diagnosed with Lupus when my cousins were about the age of your kids (they're now in middle school and high school). I'd never heard of it before and it seems like I don't hear about it often now. Thank you for letting people take a glimpse at a not so favorite part of your life.

  6. Emily :

    Do I hear the shores of California calling? I think it's time for a little vacay. Love you!

  7. Camille :

    oh no! A friend of mine in college had Lupus. I didn't know what it was except that she hardly had any energy and lived on Lortab.

    Dang it! I'm so sorry! You do a great job "hiding it". :)
    Is there any possibility of a "cure"?? Or is it something you have to suffer with forever?

  8. Barb @ getupandplay :

    I am so sorry. It is sucky disease. I'm glad you shed some light on it for us!

  9. Midwestern Gone Idahoan :

    Hope tomorrow is better!! I agree with Sarah, wish there was a magic pill to fix it!!!

  10. Donna :

    I hope you feel better soon. And I left you a cupcake, Viktor better not have eaten it!

  11. Pamala :

    my aunt has lupus… For many years she would be fine one day and not the next.. and now it's gotten so bad, with complications from other illnesses, she can't walk, she can't read for very long, can't look at the computer screen at all without headaches..

    I really hope they find a better cure or treatment or something soon.. no one deserves to suffer like this… I wish you many good days..

  12. jules @ The Diversion Project :

    Wow, you're a gutsy chick! thank you for letting me read this story and getting a bettr understanding of what is clearly a totally shit disease.

    i think you're amamzing! julesx

  13. the emily :

    I'm so sorry, that is just awful. I remember one of the girls on my floor in the dorms at BYU had lupus and what I remember most is her blinds always drawn, her always lying down, and clumps of her hair in the shower. Poor thing. Poor you. Is there any sort of solution? I mean, medication, research for a cure, anything for relief?

  14. Kathleen :

    Oh my goodness, I had no idea that you suffer with this! I adore your blog, and am even more impressed with what you do, especially when you are in pain. I hope it eventually goes into remission.

  15. Alejandragigi :

    I PRAY FOR YOU, FROM CHILE.

  16. Rebekah :

    Wow, I had no idea. Because (like your photos show), you never let on. I am so sorry. What a difficult burden. You know your peeps on the web love you, though, even when you don't post daily. :-)

  17. Jennifer Disney :

    Thanks for the insight into your life. And for helping me understand my 2 friends with Lupus better. You ARE brave! And one sassy lady! Love your blog.

  18. Karen :

    Thanks for sharing — I had no idea what Lupus "felt like" but this gives me so much more perspective.

  19. Erin :

    I have never heard of Lupus but it sounds down right miserable! So I guess there is no cure or real treatment? I am so sorry you (and your family) has to deal with this disease.
    Don't feel bad a missing a day or two or a week of blogging. Take care of yourself. Your readers aren't going anywhere. :)

  20. Rebecca :

    And you still run? A.mazing!

    Hugs to you.

  21. Leslie :

    well, you really have done a heck of a job not letting on. i'm sorry to hear of your pain, that sounds unimaginably frustrating. prayers for you. and don't cave to blogging pressure. i'm sure you know it's all self-imposed, though i can sympathize as i feel it every once in a while too. like the other commenter said, we're not going anywhere. take a day off. or 20. :)

  22. Sherry :

    i'd still read you even if you only posted once a week.

    you have a great attitude…i admire that.

    thanks for helping me to understand it a bit better.

  23. Deb :

    Thanks for sharing this, Allison! You are a rockstar and I admire your ability to live life with the glass half full despite all your pain and discomfort. I can't even imagine waking up feeling like I had the flu every morning. Thanks for your continuous inspiration. xoxoxo

  24. Crazy Lady :

    I have rheumatoid arthritis, we are cousins! One day there will be a cure, I know it.

  25. Christina :

    Thank you so much for sharing your story. I was diagnosed with SLE about 14 years ago, and reading your story brought tears to my eyes. It me, It's my story as well. I have to say though I love the term Stupid Lupus!

  26. Naomi :

    Oh, Allison. I hope you're holding up. Thanks for letting everyone know.

  27. Charmaine :

    I have not heard of Lupus but it sounds pretty scary. Hope everything goes well for you.

  28. The Thomas Family :

    I also deal with lupus. It's no fun. It is pretty new to me. I got very sick 2 years ago in April. You can read about it on my blog. Thank you for posting this. I have only meet a 50 year old man with lupus that has never been really sick with it. I haven't even talked with anyone who has it. I wanted to stand up a shout "someone knows what I deal with everyday" when I read your post.

  29. monique :

    My grandma was diagnosed with lupas 20 years ago and I see it's crazy ups and downs first hand all the time.

    I see her seize the days she feels good and put all she can into them, only to have a flare up a day later.

    This post was a good reminder to me to stop making excuses for my lack of action, because at least for right now I have my health. And if strong women like you can do all you do while enduring a physical trial, I have no excuse.

  30. Jaimers :

    I had no idea. Thanks for sharing. I knew nothing abotu Lupus, and now I feel like I know a little bit :) Sounds like a suckfest.
    I hope that you feel better soon.

  31. Laurie :

    Thank you so much for this.

    My mom is in the process of a probable lupus diagnosis and I am scared to death. I also have a strange patch on my arm that looks like cutaneous lupus (which I only know because of my research into this since she found out it was a possibility) and I am, relatedly, scared to death. It's been a rough month.

    This sounds a lot like what she goes through and it has been horrible for her too. It's good for her to have some answers and to know better how to move forward.

    Thank you. I am confident that as you have we will deal with this the best we can and just take care of her in whatever ways are possible. And this post is yet another reason why I'm so grateful to know you.

  32. Kami :

    You really do bluff it well. I think you are pretty darn amazing even with stupid Lupus. One would never know with a girl like you.

    ps. I love all the same things about blogging too, especially lately.

  33. Angela :

    Hi have you had a look at
    butyoudontlooksick.com? you might find it helpful. Take Care

  34. i'm h.mac :

    hugs to you. my best friend has had lupus since we were 12. she has been in and out of chemo for years. the past 10 years have only offered occasional flare ups (but the kind that put her in the hospital for a month). thru miracles she has been able to adopt a sweet little boy and has had the joy of experiencing motherhood thru someone's sacrifice. it is a horrendous disease that i hope some intense research develops to benefit people like you and my friend!

  35. Anonymous :

    Keep on keepin' on, you're doing a super job of grin & bear it. Such strength is an honor to see.
    We have a family history of Lupus. Great Aunt, 2 of her daughters & 3 granddaughters have or are tagged to develop it. We have memories of watching them in a full blown episode & how miserable they have been. I hope you have a better time of it. Rest well.
    ~C8>

  36. heather :

    Thank you so much for sharing the reality of lupus with us. I had no idea about the pain or really much more than it makes you tired. Boy, was I wrong huh? My best friend was diagnosed with MS a year ago and I'm finding a lot of similarities in these "silent" diseases. And in how you struggle too…not only in dealing with it, but how to get the word out when the last thing you want is sympathy. I think this post was extremely brave. I'm reading all of these comments and knowing that we all know just a little more about lupus…and you!

  37. jen :

    one of my closest friends has lupus. it sucks. wish i could send you a six pack just because. xoxo

  38. Sarahviz :

    Thinking of you, my friend.

  39. Heather :

    I can't believe I am reading this. My doctor as of this week thinks I might have it- it would explain the bouts of exhaustion and the sore wrists, the dizzy spells, and the awful "thing" on my face that won't go away. Can you tell us how you were diagnosed, if you don't mind. I need to know what to ask for, I live in New Zealand, and don't want to become a self-diagnosing internet doctor.

  40. Ashley :

    my dad has lupus also. it was awesome to hear you share the in's and out's of your disease. My dad doesn't often talk about his disease and how it affects him. sometimes it is hard for me to understand how he feels. thank you for sharing. I feel that you have opened a window into the true nature of what this "stupid lupus" entails.

  41. Hannah :

    I had no idea, Allison! You are so energetic, welcoming and warm when I've met you. You hide it so well. You amaze me.

  42. jcaroline :

    Stupid Lupus is right. Auto-immune diseases suck. Hope you are feeling better soon and we'll be here waiting for you!

  43. Jessy and Kurt Antonino!!!! :

    WOW you have so much support on this blog!!!! That is amazing of how people care about others. Allison thanks for sharing this with all of us, will keep you in our prayers

  44. Janice (5 Minutes for Mom) :

    HUGS!!!!!!!!

    I am sooo sorry! With a chronic illness I know a bit of how you feel. I am having one of those days myself (but not as severe as yours!) after traveling.

    So sorry you are having to go through this.

  45. Crazy Lady :

    Okay, kinda crazy that I'm double commenting but, here's what I thought the next day. Here's some thoughts I've had over the years.

    Carpe Diem! Because you never know which will be a good day or not.

    I treasure my body, because its fragile. we kinda have a love/hate relationship.

    empathy. pain makes you have empathy. i never wanted it, but now I got it and can have conversations with people now that I never could have understood otherwise.

    when our kids have something going on in life, I hope we can say, you can do it. this does not define you. you cannot be stopped (okay, maybe temporarily but you know in the long run).

    take it easy. I feel ya. its a club. my auto-immune is crazy club.

  46. marta :

    oh wow, i really had no idea. i'm so glad you opened up and shared your experiences. you are quite a fighter with this disease. am thinking of you. xo.

  47. Cammie :

    I found your blog through my Google Alerts, that I have set for Lupus. It takes a special courage to be candid about Lupus to the world in general. Lupus is severely unknown to much of the population and "outing" yourself as a Lupie can be a mixed blessing of people who care and want to learn more and people who judge you or want to "cure" you with their miracle cure of the day.

    I have had lupus for years and was extremely blessed to be included in the drug trials for the new Lupus drug, Benlysta, these last two and a half years. I am now in the open stage of the test and know I am getting the optimum dosage. It is not a cure but it has given me part of my life back. I haven't had any bad side effects except sleepiness the day of the IV treatment and that may just be because I have to travel an hour away to get it and we always make a fun day of lunch shopping and IV. :> I have begun to titrate down on some of my more serious medications like methotrexate, since starting on Benlysta. I will still have the damage that Lupus has done but I am very hopeful that this new med will help protect my organs and joints from even more damage.

    There is more information on Benlysta at http://www.lupus.org and http://www.hgsi.com/belimumab.html. If anyone has any questions, please feel free to contact me at cammiedawn@gmail.com I am the Lupus support group facilitator in my hometown and listed on the national LFA site for phone support in Oklahoma too.

    Hugs,
    Cammie

  48. Marianne & Clayton :

    Stupid Lupus indeed! I hope the good days might start to edge out the bad days, but I know that is probably a pipe-dream. You are incredible! Praying for remission!

  49. Boston Mamas :

    Just getting caught up on my feed my dear, and am sending HUGE HUGS. No one — no frikkin' one — rocks stupid lupis like you do. You're a rock star and I adore you. xoxo

  50. Midwestern Gone Idahoan :

    Isn't my sister the best!! She left you a cup cake!!! If they are anything like what we made a few weekends ago … YUMMY!!!!!! Hope you are doing better!! Loven the eggs!!!

  51. Alecia :

    Thank you for sharing your personal journey. I have known several people with Lupus, and I see their daily/hourly struggles. So sorry sweetie. Hugs.

  52. TX Girl :

    I was diagnosed 17 years ago at 18. I'm sorry we are in the same club, but it's always nice to hear it isn't a club of one.

    Wishing you lots of good days.

  53. Hil :

    My mom has lupus and has had it for several years now (20+ I believe). It is a debilitating disease that can suck the life out of you.

    My mom, like you, conceals her pain as much as possible. Most of the people who know her don't know she has lupus because she is that good at hiding it. I have no idea how she or you live with it day in and day out.

    People like the two of you are truly my heros. Hugs and prayers being sent your way!

  54. V and Co. :

    stupid lupis. i have another friend with it as well. i think you are fab no matter how often or not often you post.

  55. ALC :

    well I'm dumb because I asked you why you posted the same picture twice and the point was you look the same whether or not you feel terrible. Good point. I was like, "Where's the photo of you in bed?" It was a teaching moment and I totally missed it. The worst part is people not understanding.

  56. Elizabeth :

    Thank you! THANK YOU, THANK YOU! A Million Times! I knew from the first time I saw your blog I would love you,but this just topped it off. I do not have Lupus. I am 23 and the doctors always seem to tell me that my pain is a lost cause. I always have days when I am lost in my bed and that's tough when you have an incouragable 11 month old. You are a fantastic blogger and I knew you had spunk… Now I know why… Have a great day! Thanks again!

  57. The Lil Bee :

    I have a friend who has Lupus. She's very private and has never really gone into how painful it can be. Thank you for sharing this with us.

  58. Nancy :

    Dear Allison- I have been struggling to find a way to describe to my husband what it feels like to have SLE. Sometimes I think that he actually believes that he can push me beyond the pain and the fatigue. He tries so hard to make me “soldier through.” I know that this is done with love, but he doesn’t seem to understand that at times it is beyond choice. I just need to stop. I read your article and I am sitting here weeping as I respond. I plan to tuck it into his suitcase this week in hopes that he will find a few quiet moments on his business trip to read your words and know that they are mine, too. Thank you for beautifully putting into words what so many feel.

  59. Lupe Mora-Scott :

    Thank you so much for taking the time to make this blog. I am 33 years old and a mother to 3 and also have SLE. It is very difficult for my husband to deal with and I think the words you just wrote are exactly how I feel. I am having a bad flare up right now and am lying in bed crying in pain and my husband is at work and I tried to make my kids breakfast but only could make bacon and felt so bad. Thank you for sharing this. It meant a lot to me. Prayers to you!

  60. Allison :

    It is so amazing to see so many who have SLE or know someone who does. I want to thank you for describing the pain and fatigue so perfectly. I have had rheumatic arthritis since I was 12 years old. I started testing positive for lupus in 2002 after I lost my 2nd daughter. Then I went through a series of doctors telling me that my ANA count wasn’t high enough for it to be considered lupus. Not one of those doctors checked for any of the other symptoms suchs as the butterfly rash, the fatigue, poor concentration, Raynaud’s syndrome, mouth ulcers, and muscle weakness. All of which I have. I was told that it was in my head and I was just lazy until finally, I could hardly walk. My husband dragged me into the little clinic at his plant. The doctor there got me into therapy and I am happy to say that I can walk again.
    So yes, I completely know what you are going through. And yes, I too was frustrated because not only because my friends, family, and acquaintances couldn’t understand, but local doctors as well. Good luck to you in your future!! Many thanks!

  61. jigsaw puzzle games :

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