“Sick Humor” The ABCs of Spoonie Thanks

 

Alright, I’ll say it.  I’m usually the one to vocalize what most people keep to themselves, which more often than not, gets me in to trouble.  However, something inside of me is convinced that in this Spoonie corner of the world, I’m not alone.  It’s sometimes hard to be thankful at Thanksgiving.  There.  I said it.  I mean, please don’t get me wrong, I thank God everyday for my healthy family, amazing friends and sometimes overly strong will, but during the throes of a flare, it’s often difficult to see beyond the pain.  I fully admit to periods of whining, self-pity and yes, even jealousy.  We are only human and wondering why WE are the chosen ones is not only normal, it’s down right common.  In the 10 Thanksgivings that I have spent with a spoon shortage, I have tried to not dwell on what I don’t have, but rather appreciate what I have been given.  Not gonna lie, sometimes it’s a hard sell.  We all have moments of “why me?” or “what else could happen?”, and even though it’s sometimes hard to see the forest for the trees (one of my grandma’s favorite clichés) there are bright spots.  We just have to squint real hard to see them at times.

A few years ago around this time of year, I remember being extra super surly about my lack of spoons and the constant pain that was a reminder how different my life was compared to others.  A friend, noticing my less-than-festive mood, looked at me through narrowed eyes and asked me the most direct question I had ever been asked.

“Hasn’t dealing with Lupus taught you anything valuable that you wouldn’t have known otherwise?”

I thought about it for a minute before answering her.  Was there?  Was there really anything positive that could come from suffering day in and day out at the hands of a monster?  I had to think hard, and those of you who suffer the dreaded brain fog, know that trying to organize thoughts and ponder such an open-ended question when it hits is like trying to………….ohhhh shiny.

What was I saying?  Oh yes, being thankful.  I never did come up with much of an answer for her and by that point she had lost interest in the discussion anyway.  But here I sit, thinking back and asking myself the same question again.  Has Lupus taught me anything?  Could there possibly be something to be thankful for while fighting a constant battle?

The answer is yes.  Some may look at what I am going to say next, laugh, shake their head and walk away.  No problem….I’m not speaking to them anyway.  I’m speaking to the ones who have been there, who will undoubtedly nod in agreement because they understand the little things that most people take for granted are small victories for us.  I am a firm believer that understanding and laughter can co-exist in life…in fact sometimes I think you have to possess both to make it to the end of the day with even a single spoon intact.  So, in honor of Thanksgiving, I am passing along to you, how to live the ABCs of Spoonie Thanks…..Steph style, of course.

A         Acrylic Nails – Fact:  my nails refuse to grow, my hair falls out and I look like I could play the lead in a remake of Night of the Living Dead.  However, with the stroke of a brush and a swipe of fire engine red nail polish I have ten reasons to feel normal that day.  Win!

B         Bedazzled Barf Buckets – Seriously folks, when the chemo makes you so sick that you’re pretty sure you’ve thrown up your spleen for the 5th time, get yourself a hot glue gun, fake jewels and puffy paint and have arts and crafts time.  It may not stop you from being sick, but at least you’ll have something pretty to look at while your face is shoved inside of it.

C         Cans of Tan – I hate being pasty white, and with our sensitivity to light, fake baking is just not an option and spray tan can get quite costly.  Solution: Tan in a Can.  Applied correctly, you have sun-kissed skin without the risk of a flare.  Applied incorrectly, and you look like an orange zebra. 

D         Doctors Who “Get It” – Trust me, I’ve been treated by my fair share of doctors who have the bedside manner of Dr. Kevorkian.  I’ve been called a hypochondriac and told to “just get more rest”.  Nothing is more degrading than being looked at by your own doctor as delusional.  When you find “that” doctor that puts YOU in the driver’s seat of your relationship, be thankful.

E         Epsom Salt – Throw some in the tub under hot running water and you have yourself the best cure-all for sore muscles this side of legal.  However, it is important to share with your child that it cannot be used to fill up the salt shaker when it is empty.  Trust me. Ew.

F          Friends In The Box – If this needs explanation than, shame on you for not reading my other article.  Take a break, read it and come back to finish the list.  There will be a pop quiz at the end so take notes.

G         Ginger Tea – When you’re taking chemo, you have three constant states of being:  1) Throwing up 2) About to throw up 3) Just threw up.  Someone told me about drinking Ginger Tea and I was skeptical to say the least.  While it’s not going to stop you from tossing your cookies, it will battle that horrid metallic taste that refuses to go away.

H         Heated Hand Warmers – Whoever invented these little gems, I would like to kiss them and re-name my first born after them.  Easy peasy, open up the wrapping, give the bag a little shake-shake and voila….instant warmth.  If only they made socks to do the same thing.  I even have a name for them…Toasty Toesies. 

I           Infomercials – When that midnight insomnia hits, there’s no better entertainment then watching a steady stream of infomercials.  Just don’t watch them with a credit card anywhere nearby.  What seemed like a good idea at 3am doesn’t so much at noon as the UPS guy is delivering my ShamWow, Slap Chop, Bump It and Musical Snuggie.

J          Jersey Shore –  Bear with me here, and I’m sure you’ll agree.  No matter how bad I hurt or how many pills I have to take, the cast of Jersey Shore makes me feel better about myself!  Compared to them, I’m a down-right rock star.

K         Kumquats – For no reason other than it makes me giggle.

L          Laughter – Refer to above

M         Massage Therapists – When my body is screaming at me, I shut it up with a Swedish massage.  I know it’s expensive but I have no problem eating rice for weeks to afford it.  There’s nothing better or more relaxing….provided said masseuse doesn’t want to carry on a conversation.  If I wanted to talk lady, I’d meet you in a coffee shop not face down on a table. 

N         Naps – They are a little slice of heaven, aren’t they?  Did you know that they tend to be frowned upon when taken during office hours?  Apparently sleeping under your desk doesn’t qualify as a “lunch hour”.

O         Obituaries – This one’s simple folks.  Read them.  Are you listed?  If not, then be thankful you have tomorrow.      

P         Pill Boxes – When you take enough pills per day to keep half of Glaxo Smith Kline’s employed for generations to come, it’s easy to confuse them.  I can’t be the only one who has accidentally taken an Ambien at 8am and ended up face planted on a keyboard.  Pill boxes keep the a.m. pills straight from the p.m. pills and guarantees that you won’t be face down in a puddle of your own drool at the corporate lunch meeting.

Q         Quiet – With 2 pre-teen girls and a very energetic 3 year old boy, this is a rarity in my house.  Unfortunately due said children, quiet becomes a negative when used with the word “too”.  Too quiet = Destruction

R         Reese’s Peanut Butter Cups – Just because. Om nom nom.

S         Spoons – Past, present and future.

T          Thermometers – It never fails, when a flare is imminent, my temperature will spike and I run random fevers.  Having thermometers stashed in every room of the house, lets me verify that a flare is on its way and when I should expect its arrival.  Spoonie Tip:  It is wise to keep the oral thermometers separate from the baby’s thermometer.  ‘Nuff said.

U         Unbelievably Good Hair Day – When your hair falls out so much that it looks like the Yeti has been grooming in your bathroom, a good hair days are few and should be captured on film whenever possible.

V         Vicodin – Really?  Does this need an explanation?  I didn’t think so.

W        Websites – The information superhighway provides me with support and socialization.  The tweets, facebook messages and emails from others just like me completely make my day constantly.  Well….except the ones from Cialis.  Not real sure how I got on that distribution list.

X         X-tra large t-shirts – During a flare, tight clothing is about as welcomed as my yearly gyno visit.  Anything that touches my skin hurts.  My favorite “flare wear” is a t-shirt that you could probably fit me and half of the East Cost Spoonies in.  Perfect.

Y          Yesterday – Because it means I made it through, am living today and looking to tomorrow.  Bring. It.

Z          Zzzzzzzz – Unfortunately a rare occurrence in a Spoonie’s life.  But when it does happen, I awake feeling like I had just won the lottery…minus the big fat check.

~Oh, and I was just kidding about the pop quiz. 🙂

Article written by staff writer, Stephanie Kennedy.

About Stephanie: I live in Fayetteville, NC with my husband and 3 always hyperactive and occasionally 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 disease. In my day-to-day life I am a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) 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.

 

 

 

 

©2021butyoudontlooksick.com
  • Lisa Chandler

    I think my favorite is the pill boxes…makes me flash back to my semester spent in Lima Peru. It was the morning of one of my finals and I am getting ready to walk to campus. I grab my pill bottles to take my morning meds. As soon as I swallowed them, I realized my Seroquel (the only sleep med that worked for me at that time) had somehow gotten mixed into my morning meds. I still don’t know how I made it through the exam, and received a decent grade (I think I ended up with a 16 or 17, which is around a B here). Literally the moment I was done with my exam, I went downstairs to the study abroad office and took a nap on the floor of the spare room. Never made that mistake again!

  • made me smile! thank you!

  • Diane

    Fantastic article.  Put a smile on my face 😀

  • Linda Spradlin

    We have been friends on FB for a while now but today you added a link to your blog in your post. I had no idea that you even had a blog!

    Thank you, thank you, THANK YOU!!!! WOW, and did I say THANK YOU?? You are where I need to be right now, surrounded with others who really GET IT! I can honestly relate to everything I have read so far!

  • Tania

    Few others will understand what I am grateful for this year.

    A friend suggested I do a non-GMO diet. Thought, why not? Tried most everything else…

    I can now swallow like a normal person. Sounds silly to most, but when you have several allergy meds, maintenance meds for an “invisible” disease and supplements, to swallow one at a time, and hope they won’t get stuck in one’s throat, is time-consuming and frustrating.

    Odd thing to be thankful for as so many can take it for granted; but it really means so much to me.

  • Lela

    Thank you! My sister sent me the link today. She should have warned me to visit the loo prior to reading. Upon my return my eyes teared and ran as I read. Oh Steph you do know… a sister I haven’t met, a friend in the box, someone else who is twisted and witty! I did not think about decorating the trash can when I had my head stuck in it (as I was seated on the porcelain) but that might give me something else to focus on, besides Lamaze breathing, when being hit with wave after wave of nausea.

    I wondered why this huge old shirt had become my favorite and why I now live in either flannel PJ pants (or men’s PJ pants). Anyone else have trouble with stomach swelling? I can be dropping weight by the minute and then in seconds I begin to balloon up. I look pregnant a good percentage of the time.

    Rock on!

  • you looked in my box before you wrote this, thanks

  • Stevie

    I loved reading your article…I can relate to most of the ABC’s. I would add this one; F for flannel because that is my comfort clothes choice; soft, warm, and loose. and usually fun colors & pictures on it. Thanks for keeping it real Stephanie!

  • Talon

    Gods all bless “Doctors Who Get It.” Barring that, Gods all bless “Doctors Who Take Pain Management Seriously.” Cause I have one Dr who doesn’t really “get it” and can annoy the HELL out of me, but the woman takes my pain management seriously and keeps me in percocet and is open to other pain relief.

    I have ulcerative colitis. Anyone who knows someone with UC or Crohns probably also knows that their pain is often dismissed, doctors are reluctant to provide relief and we’re told to go “take Tylenol” because we can’t take NSAID’s.

    Those are the doctors who whine, “Addiction!” To which I extend my middle finger and retort, ” NO. CURE. NOW WRITE THE DAMNED SCRIPT or I’ll make you hurt like I’m hurting, and it’ll be WORTH the week in bed I’ll have to spend because of it.”

    Soap box.

    Ahem.

  • Dana

    Loved your article! Thanks for the laugh 🙂

  • Fran

    Loving it – as ever you brought a smile to my face 🙂

  • Patty

    Steph—I loved your article. You tell it like it is with your great sense of humor. I can so relate to everything you wrote. I also have lupus with many other disorders. It is challenging, but it does make you live your life to the fullest & cherish your loved ones in a way that people who are not spoonies could never comprehend. Thanks for the words of wisdom wrapped in humor. God Bless.

  • Christine Johnson

    Love it! Thank you…I think reading this caused some spoons to magically appear out of thin air 😀

  • Penny Susan

    I wouldn’t expect anything you do to be anything other than your Steph Style…

    I know I don’t know or even understand everything you go through on a daily basis, but I hope you know if you need me ever….

    you only need to call.

  • linda

    I enjoyed your abc’s and was all so true although with fibro I don’t deal with all the same symptoms. The chemo and barfing would wear me down so fast… but the again I’d loose the weight fibro and my meds have put on me, kind of a ironic/sarcastic humor there.
    About toe warmers… Several yeas ago I worked at an Eddie Bauer store, and the carried toe warmers to put in you shoe/boots and hand warmers to put in pockets or mittens. I don’t know if they have them in the stores but try their website or catalog. Also I saw some in the Deluth catalog. They have rugged clothing for people who have out door jobs or just very casual wear. They carry womens wear too, for the women who have broken into the mens world of construction, landscaping etc.Also some comfy wear for office or client meetings.

  • Darryl

    Hi, I am a 46 year old woman who suffers in pain every day now and I want you all to know that I read and appreciate every wonderful article and comment and that I am finally reaching out because I need friends in a box as well. My I ask how everyone communicates with each other? I try sooo hard to keep my sense of humor, but I am like another person when in pain. It is indeed hard but we are doing it!!!

  • Courtland

    Another great article Steph… This does give insight into where all my BIG boy t-shirts have been going. Love YOU!!!

  • Hannah

    I loved your Spoonie ABC’s. Being chronically ill, humor comes infrequently and in odd ways. Finding the beauty in a “bedazzled barf bag” is sometimes the best thing you can do. Thanks for writing this amusing article.

    Oh, and as an aside: I didn’t know that any one else knew the wonders of “Flare Wear”. Over-sized men’s undershirts are SO comfy and the perfect thing!

  • Lynne Bruner

    once again, knowing there are people out there who “get it” makes me thankful!

  • Gail Wilder

    Thank you soooo much. I added reading to my R since it’s been difficult to get off my love seat for several weeks I can read without guilt.

  • Sam

    Thanks so much for posting this. I’ve really taken a beating this past week and really needed to giggle.

  • Extra Large Tee’s. I never thought about why I love them so much. They leave my hurting body alone.

  • Hahahaha, as a fellow spoonie, I did indeed recognise many of your letters.

    I might change ‘C’ for Clarins and ‘J’ for jelly(US Jello) (always edible even when vomit looms) but otherwise, totally agree. I particularly love the xtra-large t-shirts.

  • MommaB

    This was exactly what I needed today 🙂 Thanks Steph

  • Well written! Your wit and take on our spoonie lives are pure entertainment!

  • Thank You for posting that, I have been recently told “be glad Your still alive” by a young Man who lost His Mother recently to cancer. That She would choose My situation over Hers-I agree to a point, Were all gonna have negative days, how could We not? This is aweful to live with. It’s nice to know that We can share laughs over Our situations-I giggled all the way thru reading those suggestions. SPOONIE!!!! Blessings to All of You

  • Bettina

    Thanks, Steph! Just when I’m low on spoons, low on thanks and VERY low on patience for those that live in my house, you come along and reminded me that everything is okay.
    They do make those hand warmer thingies for socks. Back when I could ski and snowboard they often saved the day. Now they sit in the closet and collect dust!!

  • Elspeth

    Love it! About the “toastie toesies”? You can always get hunting socks. They have little batteries in them that you turn on and Voila – warm tootsies.

  • Barbara

    Great! The humor and “real life” twisted together tell the story.
    I have Lyme disease and I can never get my body temperature cooled down. So as the “winter” comes to California the cool air restores my soul. My son drove me to the store yesterday and I had this urge to roll down the window and hang my head out to feel the cool air. Elected not to as son would have pulled over and asked me to walk…..

  • I love it! I am going to have to share this with some of my spoonie friends. We have our own little group and help each other out when we are able. Even if it is just a phone call or ride to the doctor. I have immuno deficiency, intersititial cystitis, and had endometriosis (hyst at 26). I am 34 now, and have the best set of doctors. One here in town and many at Mayo in Rochester. I have had at least 3 brushes with death this year thanks to the local hospital and misdiagnosis, but I am thankful to be alive.

  • Janet

    I was down to x when I finally realized you were using the letters to start what you were talking about! (Did that make sense?) This article is great! Thanks once again.

  • Erin

    I am in awe of you, Ms. Steph, yet another fantastic article with your special blend humor and truth!

  • Amy

    LOVE it, my faves are drs. who get it, sleep, spoonies, friends in a box (yes, I read it before I read this), & vicodin.. I’d have to add, cushions that vibrate, & if I could afford one, whirlpool/hot tubs, chairs you can put in the tub/shower, handheld shower heads & their massage settings, soft goose-down pillows, comedians who put funny gigs on YouTube, electronic devices that track appointments & even medication times, Coca Cola (just a little ginger once in a while is OK, but more than that, & I get sick at my stomach gingerale has too much ginger in it, so Coca Cola is the only thing I can use to help my nausea, which I get from too much pain), coupons for the hair dye I use (got my first grey hair at age 11, so I’ve been grey for a while…), climate control (heat for cold weather, but I am worse in summer so the AC is indispensable).

  • Ruby

    I wanted to let you know there are warmers for your toes just like the hand warmers. They stick to the bottom of your sock. We use to get these were I worked, because we were stuck out side in the dead of winter. Anyway they do work wonders when you have them on with shoes, so maybe you could double your socks up with them in between. I would check a sporting goods store, since the hunters at my job seemed to be familliar with them the first year the job supplied them. We were also give a hat that had pockets in the ears and there were smaller warmers to place in those pockets to keep your ears warm. Again I would find a store that sells stuff for hunters and ice fishing. Good luck.

  • Leslee

    Well, have been feeling pretty sorry for myself lately. This made me smile love it! Happy Thanksgiving!!!!

  • Ivy

    “Steph Style” There’s only one. Loved the list….gave me a happy face I will carry all day. Thanks Steph. Love you.

  • Corie

    Great article! Love it that someone else is as outspoken as I am! Thanks for the humor. Love reading your “oh-so-true” articles!

    Happy Thanksgiving and Soft Hugs!

  • Mel

    Haha, oh man, the one about massage therapists made me laugh. I’m the same way, even with the girl that cuts my hair. I’m like, I didn’t come in here to chit-chat….just do your thing so I can zone out and relax. I’ve actually told them that, I don’t mean to be rude, but I don’t want to talk.
    I had a man do a scalp massage one time, and he didn’t talk the whole time. It was awesome.

  • RedCurlyHead

    Love it! Love you and all my spoonie friends out there. Oh and about that X-tra large T-shirt, put a loose fitting belt around it, throw on some comfy shoes and ROCK IT!

    Happy Thanksgiving and spoons to you!

  • Thank you for this insightful and heart touching writing. There are times I feel so alone and this gave me the peace that others go through and think what I do about their illnesses. As a thyroid cancer, fibro, depression, panick attacks, chronic fatigue syndrome and God knows what they will find a name for next babe, I am blessed to have others who talk the talk and walk the walk in my life. I keep us all in my prayers for strength and release from pain.

  • Ali

    You nailed it – great honesty & personal view…& the ABC list seemed as if you plucked it from my life! Seeing it “put out there” is an uifting reminder….. every letter is a gem,& so apropos!
    Thank you!!!
    My eyes opened a bit wider this sleepless am! 🙂
    Go Spoonies!

  • Diane

    Thanks for actualizing what many of us feel and reminding us to remember our ABC’s. I agree with almost all of yours; my H is Hot Water because nothing makes me feel better than hot water, and my J is Jasmine green tea because it is a sensory delight and a small comfort. I have had severe fibromyalgia for 36 years and chronic daily migraines for 34 years, and wasn’t properly diagnosed until 19 years ago. I just turned 49 and feel like 89 most of the time. But you are so right. There are always small blessings to focus on instead of throwing a pity party. Thanks so much for the reminder.

  • miss33

    Love it!

  • Sam

    Thank you Stephanie, I really needed my spirit to be hoisted off the ground just a little today after being in hospital till almost 4am this morning with a full body rash that is being labelled “unspecified allergic reaction”, it also came with a side order of swollen glands in the neck/throat and swallowing was not recommended and all this was something a little bigger than the reactions my FM normally facilitates. I know that my FM is hell for me but I also know that others suffer more than I do with conditions such as Lupus and I am so grateful that there is somewhere I can come to find a little bit of humour from other who know how it is…Thank you once again <3

  • Lorelei

    Amen to the doctors that get it! I searched far and wide, and mine are cherished treasures. I don’t have lupus, but I have severe degenerative disk disease, and am a survivor of ovarian cancer, which the surgery from left me with mrsa staph infections. I do “get” chronic pain and the whole spoons thing, and I also journal about it. Thanks for the laughs.

  • Tara

    Thank you so much for making me laugh!!! As a spoonie of fibromyalgia, ME and so many other various things your website has been a total breath of fresh air!

    THANK YOU SOOOOOOO MUCH!!!!

  • Elizabeth

    THANK YOU I needed that 🙂 I was just thinking about my own “thankful list” today, and that maybe I will write about it on BYDLS on Thanksgiving. So much has changed in the last year, I’m only 31 but I have been sick for most of my life – weird too that I always got really bad at Thanksgiving time…
    I finally was diagnosed with Lupus, then added intracranial hypertension too(among many others). Right after Thanksgiving last year I had emergent brain surgery for a shunt.
    I now live with my parents and can no longer work as a nurse… I am on so many meds, including chemo, and generally feel like crap…. BUT there are so many things that are good too, I live closer to my family – they always know what is going on with me now! And they REALLY know how sick I am!! And even though mt friends are far away they are so willing to come see me because they know I can’t drive!
    I’m thankful for everyday I have here and hope I can make a difference in peoples’ lives even if it is not as a nurse right now!
    Thanks fior the list it is True & so funny 🙂

  • Sharon

    Steph, you amaze me with the way you manage to uplift others and smile through the hurt. Thanks for taking the time to raise our awareness through your writing.

  • Jennifer

    P got to me, pretty sure I have done that a couple of times 🙂 I am thankful for the “Friends in a Box” and these wonderful articles that make me laugh, and know that there are other spoonies out there. Thankyou!

  • Chelle

    “Steph style” always makes me laugh and cry at the same time! I wish I could give you a holiday break & battle the beast for you. I know it doesn’t work that way…so please just know I am here in whatever way possible. Love and miss you.