Once in a while I talk about being sick. Mostly I make snarky references to how much I hate Lupus. I even have a couple of hashtags I use regularly on twitter: #stupidlupus or #IhateLupus or even #LupusBlows. I try to keep it light because I don’t want to ever BE my disease. I’m not ‘Lupus’ I’m a girl who lives a full, productive, extremely busy life despite the fact that my body sucks.
Sure, we take a family trip to California every handful of months, and it looks awesome and glamorous but that’s just my family’s way of dealing with what is a horrible disease. My Rheumatologist, a woman who has saved me, practices in southern California so we make regular family vacations out of traveling to see her, to try and make it a little more fun for all of us.
It’s like giving a kid a sucker after getting shots at the doctor. The ocean tempers the suckage of it all.
This is how many pills I take a day. I know, it’s a lot. But don’t give me a talk about how I need to taper or take less or that you have some super special solution for me in the form of: essential oils, hypnotherapy, or some voodoo juice your aunt/sister/mother/best friend has used to cure their cancer/lupus/rheumatoid arthritis/degenerative heart disease.
I don’t want to hear it. No really, I don’t.
I’m managed by a huge team of doctors and am totally under control. This is just what it looks like for a day in the life of me.
I take pills the minute I wake up, and continue taking them all bloody day long until I go to bed at night. And it’s such a part of my daily routine, has been for close to 20 years, that I hardly even notice it most of the time.
Most of the time.
But for some reason over the last couple of months, I’ve been really sick. Not “rush me to the hospital” sick, just “I literally can’t get out of bed and hold my head up today” sick. And it’s horrible. Not just because I have a ton of stuff to do, projects to work on, jobs to fulfill, and a house to manage, but because I have two children and a husband who need me. They all need me and rely on me, and need me to be the force that holds us all together.
I can’t even begin to tell you what my husband does around the house. He does more cooking, laundry, cleaning, and child rearing than I do on a good day. That’s just how it is, and he’s a marvelous human being. I couldn’t function without him. He gives me limits, knows when it’s okay to push me, holds my hand when I cry, and comes to all sorts of blood draws and stupid doctor’s appointments with me.
Because he’s rad.
And my kids are little rock stars who get themselves dressed and fed and out the door in the morning without me doing anything but talking to them from my bed while they do it. It’s not pretty, but it works.
So once in a while, I’m missing from my blog. Like last week when I barely managed to throw up a couple of posts. It happens sometimes, and that’s okay. But every so often I’ll be hunkered down for days, maybe even weeks at a time in bed watching entire seasons of Grey’s Anatomy while I ride out the storm.
Just so you know.
Allison
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. I do a lot of how-to beauty + style tutorials, travel posts, easy recipes, home remodel projects, and cool DIY crafts you 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!
Thank you for sharing. I hate that you are dealing with lupus and I hope you feel better soon.
This disease hasn’t defined you one bit–you are still the marvelous, charming wonderful and hilarious woman that makes me smile every time I see your name!
God bless ya, Allison!
Thinking of you. I know it must be hard but you are a rockstar
Thank you for the wonderful, honest post!
Wow Allison, thanks for sharing this post. It #absolutelysucksbeyondwords that you’re dealing with this. But as the earlier poster said, it hasn’t defined you in the least. You’re the true rock star. Don’t beat yourself up about posting twice a week. Sheesh. I’m lucky if I post once a month. I hope you weather this quickly and can get back to feeling much better.
I wish I could come watch Grey’s Anatomy with you. Rockstar husband, Rockstar kids, Rockstar you! xoxo
I hope this storm rides out fast for you, and you make me appreciate the small things, so thank you.
You amaze me more than you’ll ever know. I have a hard time believing you’re in so much pain as you are such a ray of sunshine in my life. You are there as a stronghold and ready with laughter when I need it. You are so giving and down right hot so that always helps too! I know you’re in pain and most days, pain doesn’t even begin to describe it. I’m so sorry you have to carry the burden of #stupidlupus. I’m thankful for you and your choice to look beyond your disease and be such a great example for us all. xoxo
oh, sad. so very sad. i’m sorry for you and your family, but also extremely impressed with all that you do despite stupid lupus. my freshman year at byu one of my neighbors had lupus–diagnosed while she was at school–and i mostly remember her being very sick and in bed all the time (how did she still go to school? i have no idea) and her hair came out in clumps in the shower. i hadn’t heard of it before but ever since then i feel awful for anybody who has to suffer with this disease. but you sure look gorgeous, healthy, and happy, so go you.
Chronic sickness is awful, and I feel your pain. Bless you and your family!
I really enjoy your blog Allison, you are amazing :)
I like the little blue cup your pills are in–might as well make the job pretty ;)
Found you on twitter where someone shared your post. I appreciate reading this. I am sorry you have to deal with suck a sucky disease each day, and especially so the past few months. I have an autoimmune issue that has not be diagnosed yet. It has plagued me for 18 years. I have had better times than others, this is one of the not-so-good times. I am laying in the bed as well… It is time to go through another round of doctors to see what they come up with. First appt is Thursday.
Will be following you!
Bernice
Hang in there, Allison. You are an inspiration for the way you handle all of it without complaining (and no, I don’t count throwing around hashtags on twitter as complaining). Disease sucks. Lupus sucks. Pain sucks. But you have a beautiful life and you put a little of that beauty out there for the rest of us to soak up. Bless you.
This is the best post I have read on this blog! Your honesty is what makes you, YOU! My mother has lupus, and I wonder one day if I will, too. I will remember your spunk, honesty, and bravery, and will let that be an encouragement. Thank you for being real :)
I love you. Just so you know :)
GOD BLESS YOU — another lupus-hater who is so sick of hearing that you’ve got a natural healing lady who ‘does wonders’ with a TEA. I THINK NOT. slash i know how the rest of it goes so i’m sorry for all that, honestly, because #lupusblows, but dude, so do the people who tell me my doctors are wrong and their tea lady knows whassup better than the ENTIRETY OF COLUMBIA PRESBYTERIAN. now, i need to go take my medicine. which makes me sick so i then have to lay under my desk for 20 minutes. but then i’ll feel fine. and i’ll make myself a cuppa earl grey, my favorite kind of tea from my tea lady (i.e., mrs. twinings).
Like many others have said, I think this is one of my favorite posts that you’ve done. Thanks for showing us all how you deal with it all.
Thinking of you, my dear. xo
Sending you a big hug. xoxo
Just so YOU know, I have tons of TV on DVD. TONS. Not just the cartoons that your little ones borrow occasionally, stuff for grown-ups, too. So should you have a hankering for something less dramatic, or more dramatic, or just plain comical in its stupidity? You know where to find me.
Sorry you’re feeling sucky. It makes me sad to hear.
Maybe this disease helps by giving you a huge will to rock your life on the good days. And that you do, my dear.
My husband and I both have autoimmune disease as well. I was diagnosed with RA and he was diagnosed with Ankylosing spondylitis. Almost two years ago I received a traumatic brain injury. I was blind, I lost my sense of smell and taste, I was immobile. As my health begain to return and I started to research TBI recovery I discovered the primal/paleo diet. I began the diet, suffered through the two weeks of flu like symptoms but when I came out on the other side things began to regulate. My RA is in remission. At my annual exam a few months ago I do not even test positive for the markers any more. This diet cured me. Just google “lupus” and primal or paleo diet. http://www.google.com/search?sourceid=navclient&ie=UTF-8&rlz=1T4GGHP_enUS444US444&q=lupus+primal+diet&qscrl=1
It’s worth a shot. :-)
PS: My husband did not adopt this diet with me originally but is slowly adopting it now after seeing my results.
Lupus BLOWS!
You’re my hero, stoner tendencies and all.
Having to deal with a chronic illness is more than enough without having to deal with everything else that comes with it. My family has had more than its fair share and too many others I know in some way or another as well. It all blows. I hope that you can have more good days than not and can continue to just be awesome.
I’m sure you don’t want to hear the “I’m sorry”, “I feel so bad for you”, “that really sucks”, kind of stuff. So, I will just say, stay strong sister. What an awesome husband you have. What an awesome mom you must be, and thank you for brightening our days with your wonderful, and fun blog. {smiles}
Seriously, right? I have chronic, daily (as in all-day, every day) headaches (ranging from tension headaches to full-on migraines) with severe neck and shoulder pain, plus major depression and an anxiety disorder. I take meds. A lot of them. Some say way too much. A lot of people have offered “cures” with hopes of getting me to stop meds and “get better.” But, you know? Whatever! The meds help me get up everyday and survive. There’s no cure, there’s just making the most you can of every day. So, good for you for taking the meds that help you, and good for you for being honest about not being able to get out of bed when you. just. can’t. Way to be majorly productive in the midst of stressful health stuff too, and for being, from what I can tell from your blog, a really lovely person.
If you ever get tired of watching Greys you should most definitely watch True Blood- AWESOME and so very much eye candy. It’s worth faking a “bad” day just to drool :-) And, while I was SO surprised that I loved this show, Sons of Anarchy is a winner. Totally not what I would have thought I would enjoy, but SUPER good.
Keep plugging along, you never know when that next “new” treatment might work. Mine came in the form of ECTs for my massive depression/anxiety. I was a walking medicine cabinet and now I go in every 5 weeks or so, get a little zap and I’m good to go, no meds necessary. Good luck!
LOVE you, sweet Allison! You inspire me! Sending lots of love, energy and light your way! xoxoxoxo
I struggle with chronic illness too and it does absolutely blow. That’s what got me started blogging in the first place – being bed ridden and needing a way to communicate with the world. Chronic illness, “invisible” illness is truly hellish, so I cling to the internet as a place that will (more or less) take me at my word when I feel like crap, and still take what I have to offer. It’s a magical place.
hey dear girl. just wanted to write you a note to say thank you. thank you for not letting your condition define you. thank you for persevering when things seem impossible. thank you for putting on a happy face for your hubby and kiddos when you want to scream in pain and frustration. thank you for being someone creative, intelligent and fabulous. thank you for being brave enough to talk about your stupid lupus. it is difficult for us (totally fab women who have sickly bodies and spell our first names the same way) to find others to whom we can relate. thank you for being someone i can relate to on many levels.
What a good man you have. I have met your kids a couple of times and they just are so bring and loving and polite and FUN. Miss Allison you have done an AMAZING JOB. Do you know I look up to you so? I hope so.
Feel better soon! I laughed at the #stupidlupus.
I grew up with a mom that has Multiple Sclerosis and was tired a lot of my high school years. I ended up having to pick up a lot of her missing role. She is in a wheelchair now and I’ve managed to turn out ok I think.
Your kids will be ok. I believe I’ve become a more empathetic , independent person from having to learn from my mom’s illness. Hang in there and don’t feel too guilty. If your kids know you love them and believe in them, they will manage just fine.
I hate Lupus too!
What a guy that Viktor. I like him even more.
Love you to the moon and back!
Every one of these blogs has a person behind it, with so many more facets than we can ever begin to cover through our posts. You do what you need. And thank you for daring to tell people to shove their ideas about alternative approaches. I don’t think we define what we seek or can accept, knowing this is great. I love how you’ve made your treatments something the family can participate in (kind of) and that you can look at as something more than treatment. So very smart.
Allison, thanks so much for sharing about your struggle with lupus. It touched me and rang true with where I am in my own life in so many ways. Your blog consistently brings a smile or makes me think/reflect on a personal level. All best wishes that you feel better very soon and continue to fight the good fight with lupus. Blessings to you!
Thank you for sharing. It is inspiring to see what you can accomplish despite living with a chronic illness. As I like to say about my own chronic illness (Type 1 diabetes) It doesn’t define me but it does help explain me. Thanks for blogging even when you don’t feel like it and sharing all your awesome tips!
Hey, you do what you have to do. And you know what? I think you do a great job of it. Be well.
I can’t believe how much you accomplish in a day or even week for all the crap your body gives you. You are amazing.
thanks for sharing this part of your life. i love your work, but reading something like this makes me love you like a sister.
thanks for the positive example.
You know, today I am going to say a prayer for all those wonderful doctors that help some wonderful people like you every day. And, if it’s OK I’ll also thank God for television for giving you something fun to do when you feel so terrible.
You have serious class, my friend. I am in awe of your positive attitude, your happy face, and the energy on your blog. Props to you for being awesome!
Do not feel bad at all about getting your kids to do things them selfs. I figure that it is just teaching lessons that they are going to need to have later in life.
It is great to have a partner that is helpful, I also have one that is WONDERFUL and I am sure that I could not keep going if I did not have him.
I hope that you feel better soon.
thanks for posting about this. i’m so curious what other moms who have diseases are like and how they deal. i deal with it the same with an i hate want to punch RA attitude, but yours sounds way worse than mine. i just get shots now. i would love to know who your dr is in la…mine is dr. min. sorry you are sick, that stinks. but glad it doesn’t define you, we are way more than just that and your kids and family are lucky to have you as their mom.
Every time I mention my RA to anyone, anywhere, I get a lecture about what diet I should try or medication I should or shouldn’t be taking. I’m 31 and I feel like I’m 91 most of the time. But I agree – the more it’s talked about, the more people are prone to equate the person with the disease and that becomes all that you are. But it isn’t! I have to remind myself of this umpteen times a day and I think your blog post helped me remember for today. Thank you.
Sorry you are having a rough time of it, but I admire your attitude and spirit. Glad to hear you have supportive people there to ride it out with. That is the most important thing anyone with a chronic illness could possibly have! I hope you feel better very soon.
I love you. That is all. xo
I’m sorry to read that you aren’t feeling well & I surely hope you are feeling better this week :) And I also just wanted to let you know, that even though I rarely comment, I’ve been a loyal reader for nearly a year now & absolutely LOVE you & all of your posts- cups-o-pills & all! ;) (That is a gorgeous cup btw!)
I followed your own link back here from your post about Viktor’s surgery. I don’t really know what to say other than ‘thank you for your candor – it helps people understand.’
I realized that I have taken pictures over the years of my various ‘daily pills’ groupings and I’m wondering if it’s because I have often contemplated writing about it, but have never found the courage. Mostly, I guess I’m afraid that a post like that would garner a slew of ‘if only you’d try XYZ instead, you’d be able to get off of those!’ comments and I would want to kill people who were *trying* to be helpful, but really were just infuriating me by assuming that I haven’t tried everything under the sun.
So thanks… this is an awesome and brave post.