Confessions of an Unapologetic High-Maintenance “Spoonie”

 

pedicureI am unapologetically, standing proudly on my perfectly pedicured toes proclaiming that I am high maintenance. Where exactly is it written that just because I have Lupus, I have to accept the life of a bag lady? Over and over I hear the same thing from doctors, friends, strangers, facebook friends, and people who friend request me just because they think a higher friend count looks cool…. “you must not be sick if you can get your hair done, sit long enough to get a manicure, make it through an aerobics class, have a glass of wine, dance naked with a lampshade on your head” Ok, that last part may have been too much information, but the ridiculousness of some people’s reactions to my life warrant such over exaggeration. I am a girlie girl….I like pretty things, I like feeling pretty and I like pampering myself. If anyone deserves to feel pretty on the outside, it’s those of us who feel like our insides are anything BUT pretty. I like looking put together and normal to the outside eye, because anyone who is chronically sick, knows on the inside you are more of an out of control mess than the public relations department of BP.

Sure, there are the days that I drag myself out of bed, look into the mirror and realize I could frighten small children enough to go running home to their mother’s arms, crying about the scary ghost lady down the street. I could care less if my entire head looks like the “hair gel” moment of Something About Mary, or I look pale enough to play a very convincing lead in “Powder…The Sequel.” I shrug my shoulders at the fact that my body hurts so bad the only thing I can stand on my skin is an XXL t-shirt that announces to everyone proudly that I “drank the Rooster shot and lived to tell about it”. I hold back the tears when my 3 year old sees me dressed and out of bed and says “Mommy, you pretty, you not sick no more?” I hate looking at that woman in the mirror. She’s not me. She’s not the woman I have known all my life….the one that never needed sleep…never stopped….and had more energy than a room full of preschoolers with an endless supply of Fun-Dip. That woman was invincible. But she is gone…she’s been gone for some time now. Instead, I find myself stuck with a new version of me….the one whose body shuts down well before 9pm….who pays for days for a simple outing to the mall…..and whose energy level is more on par with a senior citizen with a bad attitude. My “me” days are few and far between, so when the autoimmune gods bless me with one of those coveted days where I look in the mirror and see “Steph” instead of “What Steph used to be”, you bet your last spoon that I’m making the most of it.

Yes, my hair IS highlighted four different colors….it takes a good 3 hours of sitting in the salon chair, my knees screaming and my fingers so stiff I resemble a zombie from the Thriller video. But guess what? My hair falls out. I have patches on my head that have hair and patches that don’t. Some days I am a 36 year old woman with a comb-over that could put Donald Trump to shame. After I take a shower on any day of the week, it quite possibly could look like I murdered Chewbacca in my bathtub…..so forgive me if I feel the urge to bleach the gray out of the hair I have left and feel pretty for half an hour.

spray tan boothYes, I regularly get spray tanned. If I could lie outside in the sun or fry my internal organs in a tanning bed like a normal high maintenance girl, I would…trust me…there’s nothing better than tan lines. However, both ways of sun-kissing my pale, Casper white skin send me into a flare tailspin before you could say the word “crispy”. Forgive me if I prefer to look in the mirror and see the bronze glow of “tan in a can” rather than the transparent, dark circle eyed, butterfly rashed, bruised up skin that normally looks back at me. White is not a color…..white is a bread and what I wore on my wedding day.

Yes, I work out. I even *gasp* teach aerobics classes. If I have to hear ONE more time “well if you can exercise like that, you must not feel too bad”. To this….I only have two heart-felt words. BITE ME. If your muscles have never ached so bad that you cry hysterically as you sit in a scalding hot bath at 3am, then you have no right to judge what I do to prevent it. I work out to live. I exercise to function. I sweat to be able to walk as you run. Working out is not a chore I do to wear a size 4 or to have six pack abs. I work out so I can drive to work….stand for longer than 10 minutes and pick up my son with arms that don’t collapse from muscle failure. If all my hard work gives me the illusion of a strong, fit and normal woman, then I’ll take it….and if that illusion makes me less sick in your eyes, well, then I’ve done what I set out to do. I have some women who have taken my class for ten years who just recently have found out that I am sick. I worked so hard for so long to not seem weak….to wear that bedazzled superwoman cape that makes me invincible. You don’t see the days it takes me to recover from one hour of exercise, or the tears I cry alone at night because I can’t tell you how much each bead of sweat costs me in time with my family. Ironically, I have so many more of them tell me that now that they know what I overcome on a daily basis….it gives them MORE motivation to push themselves to their own fitness goals. I remember one participant’s words well…. “If you can get up here and push yourself with all you go through, then there is no excuse for anyone, no matter their size, shape or condition, to not do the same.” She made me cry. She “got” it. Very few people “get it”. I was so overwhelmed with emotion I made the entire class do 100 lunges. I should probably apologize to her for causing her to be chased to the parking lot by a mob of angry spandex-clad class members in muscle failure.

manicure Yes, I get my nails done on a regular basis. Continually looking at blue nail beds because of a never ending battle with Raynaud’s Syndrome became more than I could stand. Slapping on a layer of acrylic with some hooker red nail polish makes me happy. If I have to look at swollen knuckles and numb fingers, at least at the end of those distorted hands, I have something pretty to look at. They really look nice when I have my head shoved in the toilet, throwing up every internal organ I have for a full 24 hours after my weekly methotrexate injection. They are also a nice visual contrast when having to tick off on each finger the number of pills I have already taken, or the hours it has been since I have been able to stomach plain water, or the number of days it has been since I have been able to sit at my daughter’s softball game for longer than 10 minutes without having to leave in pain.

The phrase I hear most from well meaning family and friends is…. “But you USED to (socialize party, stay up late, go to the pool, go on day trips, clean the house, etc). This statement is true. I most definitely did USED to do all that stuff and more. I used to be unstoppable. I simply am not that woman anymore. I can’t be. Nothing is the same. If I’m able to get ready and go to dinner with my family, I am proud of myself because I have once again….gotten the best of my disease……that day. The next day, it may come back with a vengeance and remind me that some days…I am at the mercy of Lupus’s will. I never know from one day to the next, or for that matter, one hour to the next, how I will feel. Just because I felt fine enough this morning to type this on the computer, doesn’t mean that in two hours, I won’t have to take a nap…..simply because my body completely shut down on me. Every day is a gamble and some days I feel like I am playing blackjack with my spoons. I see the cards that I’m dealt, and know how desperately I want to get to 21…I mean let’s face it…it’s not often that we win and the Vegas odds most definitely aren’t in our favor. So, some days I will tell the dealer to “hit me” and I get a queen and an ace and bask in knowing I beat the “house” for the day. Then there are other days that I have 18 showing and gamble on one more card…only to have that 6 of clubs show up and lose all my chips and spoons for the entire week.

I don’t look sick. I know it….I hear it constantly. If I stopped doing all the things that I have just talked about…would I look more deserving of your sympathy? I am assuming if I could see all of your faces, they would all be nodding in agreement. Good. That’s exactly my point. I don’t want your sympathy. I want your friendship…and I want you to realize that the small things that I do to make myself feel and look better are not done out of vanity….they are done out of an intense need to feel normal….to feel like you do every day of your life. I value the days I can look in the mirror and smile back at the reflection. Those days are few and far between for me. If there is one thing that living with Lupus has done for me, it’s made me appreciate the days I can wear heels, the days I have the strength to fix my freshly highlighted hair for a night out with a husband who has watched me cry myself to sleep for a week straight because I couldn’t tell him what hurt……because everything hurt…..it has made me live for those infrequent moments where I can show my daughter how to flat iron her hair and how to correctly apply lip liner.

So the next time that you complain because you’re having a bad hair day…..remember to be happy that it’s not falling out because of the chemo injection you took last week. The next time you complain about it being too hot outside to play with your kids….remember to be happy that an hour in the sun doesn’t send you into a flare that has you bedridden for days. The next time you say you are just too tired to go to the gym…..remember that there are those of us that would kill to make it through an hour on the Stairmaster without having knees the size of cantaloupes and three days worth of anti-inflammatory injections. The next time you complain about your nail polish not matching your outfit….remember that you have the ability to paint your own nails without your hands shaking so bad, your fingers end up looking like a CSI crime scene.
Yes, I’m high maintenance…and I make no apologies for it. I make the most of everything I do because it makes me happy. I would love to have time on my side….to not have to break plans with friends because I just can’t seem to wake up enough to shower…..and I would love for ONE day for you to walk a mile in my heels. Cause then maybe, just maybe, you would understand why the days that I can successfully put them on, I walk taller….I stand prouder….and I strut as much as anyone could possibly strut. I walk in those heels with pride beside my friends and family, because they know that tomorrow, those heels may sit alone in the corner of my room because I lost the battle that day.

Article written by guest writer Stephanie Kennedy

About Stephanie:
I live in Fayetteville, NC with my husband and 3 always hyperactive and occassionally adorable children. I was diagnosed with SLE in 2001 at the age of 27 and in the time since, have added Scleroderma, Hashimoto’s and Celiac’s disease to the original Lupus discovery. In my day-to-day life I am a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) with a local electric cooperative and part-time fitness instructor. For the past two years I have served on the Executive Steering Committee for the LFA’s Fayetteville Walk For Lupus Now event.
©2024butyoudontlooksick.com
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  • Tonya Adams

    LOVE IT! AMEN SISTA!

  • Courtland

    We’ve been together for over 16 years now…. yes 16. I have been able to know and love you both prior to and after your symptoms and diagnosis. You are an amazing woman who touches every person’s life you come in contact with, even if you don’t realize it. Your energy, excitement and passion for life is contagious. You are an inspiration to so many others. I know you would never wish this or any horrible disease on others. By simply stating you would like for other’s to walk in your shoes (so as to UNDERSTAND what you and so many others with this and other debilitating medical conditions battle on a daily basis) for a day implies a malicious thought or reference is probably the MOST ignorant thoughts and comments I have ever read. You and so many others have a love and zest for life so as not to allow the disease to dictate what you can’t do. You look at it as a calling and a challenge as to what you CAN do. Continue to be the most powerful and empowered person I know and realize that by your attitude and your actions you both educate and inspire SO many others.

  • What a perfect description! Would it surprise you to know that I’m printing this out so I can read it again tomorrow when my vision isn’t double and blurred? No, I didn’t think so. Terrific stuff. Thanks so much for sharing!

  • Chelle

    Entertaining, insightful, honest, amazing & beautiful. Just like you. Thank you for fighting the good fight and doing what you have to do to get through each day. My life would not be the same without you. I hope your article can help people understand what a horrible dissease Lupus is & help raise funds to further research. You are an inspiration to many!

  • Bernadette

    Wow! I’m not really sure what to say, but I wanted to write. It makes me cry to read someone elses story when it could be me who wrote this. It’s a very isolating feeling like no one understands and then you read this. Thank you for sharing your story and what a gift of writing you have.

  • Alisa

    I have always been amazed, and quite frankly admired, at your determination, will and just plain sassyness! This was the most well written blog I have read in a long time and I stand by your side in your fight! Woman you ROCK!

  • Well said my tweetie friend! You had me in tears… now, that’s enough of that. I always look forward to your tweets on my down days because they help me get back to my usual whimsical self.

  • Shirley Dennis

    You do rock Stephanie! I don’t have Lupus but have MS and Crohns. My illnesses are somewhat different than yours yet so much alike.

    I want to be high maintenance so I can feel better about myself. I’m not married and on SSDI. I do live with my BF but I still can’t afford to keep a French mani updated so I suffer seeing my brittle nails. I can’t cover up my gray hairs due to low funds. I’m not paying some of my bills now because I have to pay my doctors and hospitals so I can keep seeing them. I want to see a personal trainer so I can get feeling better but I can’t because…see above.

    I am glad you and others can help yourself. I’ll keep reading about you and keep dreaming.

  • Lisa

    Steph –

    Thank you for being able to put into words what so many of us feel on a daily basis and just can’t explain to the people in our lives… I went to have my nails done today and came home to find this article. I have been trying to find the strength to go have them done for nearly two weeks. But, after work and my commute, all I can do is drop myself on the sofa at night and weekends are for trying to re-charge enough to do another week. I can’t tell you how much it means to find this site and people like you who are able to tell our story with eloquence. Bless you!

  • Denise

    Wow, Steph. Very powerful. I hope that, thanks to you, I am one who “gets it”. You rock!

  • Thank you for your touching story !!! I don’t have Lupus,but I have Degenerative Disk disease in my cervical and Lumbar along with many other issues in my spine. As I sat here( in my favorite pjs and my favorite slippers which I left on all day today )and read your story I nodded over and over I GET IT !! My children think if I happen to get dressed out of my PJs we must be going somewhere.Most days I never make my bed because I know I’ll be slipping back in at any bad moment. I use to weight train and run 3-4 miles everyday.Now its a workout to the mailbox.(though there is many of days I con the kids in getting it)Long story short(because I could go on and on) Thank You from the bottom of my heart for sharing your story you will never know how much this has meant to me personally.I wish you many days filled with extra “Spoons”.

  • Aimie

    OMG!!!! So true!!!!!

  • Alicia Hoover

    I am an admitted girlie girl as well. I am currently waiting.. waiting for a second opinion, because they can’t seem to figure out what is wrong with me. Fibro, RA. Lupus… ??? I’m so tired of feeling worthless! I can so identify with the “woman in the mirror” statement! Only a year ago, I was working full time as an internet sales manager of a multi million dollar business. My co-workers couldn’t understand my constant pain, and with the owner in their own words, “lost sympathy” since it had been going on for so long. Today is one of those days where I just want the old me back. I used to be superwoman. No problem to big or small, I’d create a fundraiser! My 8 year old is fully autistic I also have a 15 yr old. We are starting to financially struggle because I can’t work. I can fold about two towels before stabbing pain goes up my arms. I can’t sleep, I have no appetite. BUT I TOO HAVE MY HAIR HIGHLIGHTED WITH 2 DIF. COLORS, AND MY TOES AND FINGERNAILS ALWAYS MATCH!!!! (Along with my undergarments, because as my mother always said, you could get hit by a truck! even though falling is more of a liklihood nowadays!! I try to stay positive, encourage others, but sometimes I just want to hide away and pretend that this is all a bad dream. I just want an answer so that we can take steps to treat, so I don’t have to hurt all of the time!

  • Tina Rose

    I love reading your articles. I feel like I’ve found someone who “gets it”. It is so difficult for people to understand that you aren’t avoiding things, events by choice.
    I’m very glad you write all that you do.
    I am fairly new to your fb page, and now site.
    I love what I see,,,and want to just hand a card with the spoon theory to people in my life.
    Thank you!
    T.
    ps- I never thought about exercise as a way to keep things functional, it just hurt and I focuesed on what I couldn’t do,
    I go to PT several times a yr.

  • Annette

    Wow Stephanie! You totally rock! Your honesty, wit and emotional words had me laughing, crying and looking at my own lupus life. It made me feel a little better about myself… you nailed it beutifully. Thank you so much for sharing and for being such an inspiration.

    I really love your two heart-felt words… while I may not say it aloud to someone that doesn’t get that I’m trying desperately to maintain the illusion of the strong, fit and normal woman (that I used to be), I’ve shouted it in my head a million times.

    11 years ago, after going into a severe flare and a coma, my doctor came out and told my family that it was really touch and go— that basically I’d either survive or not in the next 15 minutes. To which my sister replied “she’s going to make it… she’s too damn ornery to die.” That has been my mantra ever since (especially then going into another coma just a few weeks after being discharged from the first 4 month hospitalization). It only feels like I’m going to die somedays (really bad ones).

    Just keep on fighting the good fight— you go girl!

  • Traci

    Stephanie – Thank you for such a brilliantly written article! All the things I wished I’d said. Most days I really want to just hide and not see anyone. My face gets that wonderful butterfly rash with dark patches from the rash. So the ‘peaches and cream’ complexion from my younger days is totally gone. I buy nice make up to cover it. Like you, my hair comes out by the hand full in the shower, so I make sure the cut and color is as flattering as possible. And worst of all, my weight has increased so much after a car accident that I feel like a cartoon of my former self. This I have yet to figure out how to deal with. The medications, joint swelling and pain have all contributed to this. But I am in a vicious cycle – when I try to exercise, my body just over reacts. Joints swell, pain is unbelievable and I set myself back weeks. I even have at least one stress fracture in my foot from water aerobics – I kid you not! I only seem to have enough spoons to go to work and come home. I vacuumed my living room this past Saturday and was in bed all Sunday. Me – the person who used to get by on 3 hours sleep and was always up for some fun or outing. I have one friend I do things with and understands that I have to keep close count on my ‘spoons’. And a couple of others who are also coworkers that I try to go out with on a day outing at least twice a year. Otherwise I spend time with my family occasionally. It took me years to get my own mother to see that I was ill and couldn’t just ‘snap out of it.’
    So ladies – let’s pamper ourselves and treat ourselves gently. Remember to use some of your ‘spoons’ to do something nice for yourself! And if any of you know of a gentle exercise that can help me try to get my poor body back in shape – please let me know. I just can’t seem to name that person I’m seeing in the mirror these days! 🙂

  • Crystal

    Steph I love you!!! You can express things like no one I know, you made me be beyond proud to know you and have you in my life!!!! As soon as I am healed up I will back in step class every saturday miss you!

  • Lara

    Beautifully written and inspirational article! I can’t afford manicures and such on disability but I do all I can to look my best no matter how bad I feel. I love when a nurse comments on my cute purple toenails poking out of hospital sheets. I take the time to put on earrings and do my hair just to go to the drug store. Its not about looks, its about making myself feel better in any little way possible.

  • Karen Byrnes

    I have known Steph for nearly 13 years now, & although only having spent a weekend together in those 13 years (I live in Australia, she is in NC), I class her as one of my very dear friends.
    Her amazing fighting spirit is such an inspiration, and her humour attracts you to her & keeps you with her.
    Steph, I love you, you are AMAZING, AMAZING, AMAZING!!!!
    Your ability to tell people, or your battle with Lupus to ‘go to hell’, in such a way, that it almost makes it sound like they would enjoy the journey, is just wonderful!
    I hope each day that you are blessed with at least one more ‘spoon’. You deserve so much more though, but I know how much ‘one more’ would mean to you.
    Love ya babe!!! xxxxxxxx

  • Ivy

    Steph, this was truly a perfect and amazing article. It really shows how much we still want to feel normal and attractive even though we get robbed so much by this disease. BRAVO!

  • I love this article! I’m one of those that let Lupus drive my life instead of me. But you’re such an inspiration that I will stand tall (well as I can ’cause I’m 5’2″, lol) and will spare a little time to have a spa and feel like a queen for a few hours! And when I take out my disability ID and people protest because I look healthy I will thank them bacause I know I have achieved the illusion!

    God bless you and gives you tons of spoons!!!

  • TammySue Davis

    As Stephanie already knows, I think SHE ROCKS and this was great, as everything she does is.

  • Well put Stephanie! SOunds like I coulda wrote most of that myself! I get so sick of people saying “But you look so pretty! You can’t feel that bad, I don’t have the energy to put on makeup or do my nails! HOw do you do it?” Jesus…it’s called effort and wanting to LOOK normal! Anyway…awesome article!
    Tammy

  • ShanKaz

    Thank you for writing this…even though I am not nearly as severe as you are I could identify with a lot of this. I just took a camping trip with my son’s cub scout troop. I have RA and am currently fighting a cold (you all know how this is…a simple cold turns into a 3 week ordeal or more because your immune system is floating between being shot or being overwhelmed). The first day we went on a hike that happened to be filled with stairs up and down. I did not know this and thought “I hiked Sedona 3 years ago (before the RA) with no problem…I can do this”. Well I did it…apologizing the whole way to my hubby who stayed behind the group with me taking 3-4 steps and then stopping for minutes at a time. And knowing full well that the other parents were assuming that I was just way out of shape.
    So even though you have it much rougher than I do, I thank you for writing something that allowed me to feel like somjeone other than my hubby understand what I am goig through. THANK YOU! And keep on fighting!

  • Renea Popdan

    Steph is now and will always be an inspiration to me. I met her through the gym I joined on a day when I thought to myself that I was never coming back. Because of the fact that I am an overweight, out of shape, frumpy housewife that felt like she was dying after one areobics class! But steph confronted me after class and told me to “not give up” and to come back next time. So, I did. And a there a friendship was born. When she finally told me about Lupus and chemo every week, I honestly couldn’t believe that she got up there and taught our class like she did. Or that I could barely keep up with her! So after that, everytime I did not want to go to the gym because of tiredness or sore muscles, I remembered what Steph was going through and that became my motivation. I am truely blessed to have met Steph and to learn about Lupus and how it affects so many people and their families. I would do anything to help the cause that will find more “spoons” for my friends that live with Lupus everyday. Since meeting Steph, I have met several other wonderful Lupus Ladies that I cherish dearly. And it is not damning for them to want others to “walk a mile in there shoes” just for one day when they ask stupid questions or make ignorant remarks. Its human nature. There is no other way to truely understand what another is going through, unless you have lived it yourself. So everyone should think about that the next time that want to judge someone. And they should also take the time to look in the mirror and judge themselves. Steph, I love you girl! Do not give up! xoxoxoxo

  • O Yeah! You have inspired me to get up off my obese bottom and try Curves. I hope they have a beginner class for old, beat-up RA / fibromites!

  • Jeannie Holmes

    Amen sister. You know how I feel about you and this disease we both fight. You rock. That is all.

  • Catherine

    Stephanie- this is such a joy to read, even though at the same time it breaks my heart. I identify so much with this – and it’s so funny and real and inspiring. All the times I am putting effort into looking good and fostering that great illusion of “being normal”, I also know it’s going to make people believe I am healthy. This article has helped me think “so what?” and that is huge. Do things that make you feel “happy” and rely on people who get it. Anyone else can just move right along and stop playing doctor when such a serious and horrible illness is involved!
    Thanks for sharing your writing and great humor and passion.

  • deborah

    you are a true fighter never stop being you

  • LOVE this post, even though it breaks my heart that you have to deal with all this.

  • Kara

    Absolutely brilliantly written. I wish we could all walk in your shoes for a day because quite honestly, if we all did…there would be a cure or at least better medication available. Keep fighting the good fight, tanning, getting your hair done and your nails did. 🙂 You are fighting a good fight and doing it beautifully. You are an inspiration to many.

  • Barb

    Hey Steph, It’s Barb(justforme). Thanks for the great blog! I live this, not because of myself but because my son has an invisible illness. He has ehlers danlos syndrome. He doesn’t look sick. He looks like a big healthy football player. He’s 22 yrs old, 6’3 and 220 lbs. There are no outward signs of his illness. Unless you look beneath the clothing and see the keloid scarring from joint reconstruction surgeries. At 22 his body is filled from head to toe with arthritis, bursitis and constant dislocations. But very few of his coworkers or casual friends know anything about his pain. They aren’t there in the morning when he wakes up and screams as he puts his shoulder or hip back in place before crawling out of bed. There are people who think he’s a spoiled brat because he still brings all his laundry home to me. He eats out or takes food from me every single meal. He sleeps at least ten hours a day. He doesn’t clean or grocery shop.

    It breaks my heart as a mom to know that there are people out there who just assume he’s lazy. When the truth is it takes super human effort for him to get out of bed and sit at a desk for 8 hours a day. So thanks for standing up for people whose illness doesn’t have a voice of it’s own.

  • Rascalete

    Thank you stephanie for tell us that are more fortunate what iitis really like to be in pain constantly. My prayers are with you and all thiose who suffer with pain on a daily bases.

    I would hope that David Cook gets to read this, he is always very sensitive and has compasision for people who are living with a physical hardship and I bet he would even get emotional after reading what you go through day to day.. ~frannie

  • Julie (jukles)

    I am lucky enough to never have had serious health issues but have always admired your strength and humor, although i have at times wondered about your sanity (running in 100+ heat wasn’t it? haha). But reading this i think i understand even better now. Personally, i think it’s great that you do all you do and i think you are an inspiration to many to keep on fighting back. And really, were would we be without our crew leader? 😉 mwah!

  • Mike Clines

    That was an awesome article. You did a great job. I can kinda relate to that desire to feel and appear normal so I really liked it!

  • Lillian

    Stephanie – Your posting puts into words exactly the things that I say to myself on a daily basis and what my Mom and I talk about when I’m having a low moment. I am blessed (at the moment) to be healthier rather than sicker, but like you said (not in the same words) – all it takes is the flick of a butterfly’s wings somewhere to change my entire situation. I, too, pamper myself because it makes me feel pretty and good about myself. Overall, what I identify with most is your drive and motivation to workout. Since I was diagnosed with FM/CFS, I have found that exercise is one of the only things that actually provides relief even while it causes me pain. A friend recently asked me, “Hey Lill, are you training for something?” and I replied: “No, I need to push myself this hard to actually feel like a normal human being.” …she was amazed that I could lift weights and row in the morning on ergometer (I was a coxswain in college) and then turn around and take a 60 minute spin class in the afternoon. Sure, I crawl into bed each night barely able to speak my own name, but when I wake up and have only minor aches and pains instead of screaming muscle and sinew, it is SO worth it. (…that, and no one really looks funnily at a girl in a gym who is crying because she’s working out so hard).

  • Kathy Kile

    Thank you Stephanie for writing from your heart and with such gusto. You still have a lot of fire and passion in you and it was wonderful to read and “hear” that. We all live with the desire that our bodies could express what lives in our hearts and minds and spirits.

    I struggle constantly with this issue of feeling the need to apologize if I have a good day or especially several good days and can do something physical or if I am dressed well, hair done (nails are never done, but they weren’t before either) and looking great. There are just so many people from the past 20+ years who have beat up on me because in their opinion I just need to work harder, think about happy thoughts, etc, etc and that I’m not really “that sick.” I have allowed myself to learn to live defensively and that is not acceptable to me. Your article was like a breath of much needed fresh perspective. Thank you.

    Some truths you spoke made me cry because they hit home so hard…. “I hate looking at that woman in the mirror. She’s not me. She’s not the woman I have known all my life….the one that never needed sleep…never stopped….and had more energy than a room full of preschoolers with an endless supply of Fun-Dip. That woman was invincible. But she is gone…she’s been gone for some time now. Instead, I find myself stuck with a new version of me….the one whose body shuts down well before 9pm….who pays for days for a simple outing to the mall…..and whose energy level is more on par with a senior citizen with a bad attitude.”

    I am still mourning the loss of that Kathy, even after all these years. Maybe because of all the years. Regardless, I am inspired by you to live the good moments with more joy and far less apology. Thank you again.

  • Rachel Schroeger

    I love your story…I am almost to the point where I can’t work anymore…the fatigue, pain, Lupus/Fibro Fog…I to get manicures and pedicures because it makes me feel better and my husband loves to look at my nicely painted toes…your story inspires me to start walking a little more each day if I can and not feel guilty about pampering myself.All I can say is “You Go Girl!”

  • Erin Talley

    Steph, what an amazing blog post! I must admit, it made me cry (so thanks, I was at work) to fully learn what you go through day in and day out. You are an AMAZING friend, wife, and mother and I am grateful to have been able to reconnect with you after all these years!

  • bridget

    i would never ask for anyone to spend a day in my shoes no matter how stupid or annoying their questions may be. it gets frustrating not living up to the “ideal” that someone dealing with disability should (as in, i exercise, try to remain active, am equally vain about my appearance) but i would never damn someone to my life so i could feel validated for my choices.

  • hey
    i really love what you wrote. yes we count spoons and on bad days there aren’t nearly enough
    but on good days ….well we can have a life and we don’t need to wear bags

    i mean i am a swim instructor and a lifeguard so yeah i am very active

    the only thing i really gave up is competitive sports because when i participate i wanna win and that just doesn’t work;)
    huge thumbs up for your guest writing
    and i hope you enjoy your life every day

  • Chelsea Carey

    Steph, your article made me laugh, cry, and think all at the same time! Feeling like crap all the time and knowing that there really is nothing to alleviate the pain or help you make it through the unbearable days is no fun….. About as much fun as having more than one symptom of Lupus and having 5 different doctors tell you its everything from dehydration to too much exercise! Come on people!!!! Hopefully all of the efforts you put into lupus awareness will pay off with better treatment and better diagnosing tools!

    I love ya girl!

  • mer

    Today is a really bad day. I am going to complain to you, but only because I think you will understand and not judge me. I am so sick I am lucky when I CAN get my hair done. I can’t afford fake nails, and the pain in my hands is such a gamble that manicures are so much coveted I can not even tell you. I do not have the money for fake nails because of my medicines. I am out of coverage for the year and my meds are about 4k a mo. But, I do not take everything. I am in so much pain today the pain meds are not helping nor is the muscle relaxer. I almost passed out last year while getting my hair done once. People wanted me to get my hair done and have me time. It was so traumatizing that I cited finnancial reasons and went to a box. (I also fell that day with my daughter in my arms while dropping my daughter off so I could get my hair colored.)

    I had recovered for a bit this year, but, now I am in bed today crying because everything hurts so much. I am so frustrated. Today, I want to be more like you again. I want to bend over without pain. I want to do laundry without thinking of the pain associated with it. I want to feel whole. I just don’t know how.

  • Penny

    I’ve known Steph for a little over two years. How we met is probably a little story of its own, but even though I hadn’t met her in person right away, I knew here was a stong woman. Steph has one the most dynamic of personalities I have every known with a kick ass sense of humor. I have no doubt through it all, this is what helps her to keep putting one foot in front of the other. I knew nothing about Lupus before I met Steph, but through hearing what she deals with on a daily basis I’ve learned a lot. I couldn’t even count how many days I knew she wasn’t feeling well, but yet she continued to work, be a wife, a mom, a friend….and somehow hold it together..the woman has nothing on duct tape (an inside joke)
    I knew when I heard she was writing this, it would be awemazing….and it is. A gift of any truly talented writer is making your reader feel what you’re saying. I don’t know how anyone can read this and not “feel” what life is like from the inside of someone who struggles with pain every day and yet can still look at life, find the humor, laugh and smile.
    I just want to thank you, Steph, that even through your pain you can still make other people laugh and smile. You, my dear, are more gifted than I think you’ll ever know, but those that know you….we know.
    God Bless you…and every step you take….
    It’s been an honor knowing you and being your friend.

  • Kerry

    Lovely. Your writing is inspirational, poignant and you use humor well, to draw your reader in.

  • courtney

    Love love love this! As a spoonie princess myself I totally identify…someone commented on how I found time for a pedicure recently…they didn’t understand that since my legs are covered in bruises and broken blood vessels from the high dose of blood thinners I take to keep from clotting, I can’t wear cute shorts and skirts – but at least my toes peeking out from under my ankle length dress will be cute!

  • Lori

    You are an amazing writer, Steph… so glad to see you using your talents and sticking in the face of this wicked disease by helping and encouraging others. Looking forward to many more blogs and writings from you!! Hugs!

  • CBW

    Keep kicking ass, Stephanie!

  • OMG…..I so love this article!!!!!!

  • You rock! Can I borrow you make up bag! And I really like this quote:
    “anyone who is chronically sick, knows on the inside you are more of an out of control mess than the public relations department of BP.”
    So true!

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