“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.

 

 

 

 

©2019butyoudontlooksick.com
  • Lisa

    They DO make the foot warmers. My husband used to use them when he was at work outside in the winter.

  • Connie L Singletary

    Stephanie, great article! Scleroderma sucks! What an awesome community here! Thank you!

  • Lindsay

    I just found this website this evening and have never laughed harder in my life. I avoid most websites that refer to chronic illness because of how depressing they can be. I won’t be avoiding this one. I laughed myself to tears over the Crisco – my hands are still a little greasy from earlier tonight. Now I have to explain to my boyfriend but – Thank You.