Category Archives: Humor

Party Etiquette for a Sassy Spoonie/ Missed Manners

Living with constant chronic pain or chronic illness is no party, but you may have been invited to a few this holiday season. Here are some ideas and tips to help you make it through the festivities as we approach the new year.

Original Painting of Glamorous Woman by Kim Legler on Etsy | Party Etiquette for the Sassy Spoonie

Glamorous Woman | Kim Legler

1. No Cocktails
I know, I know, at your next party, you may be thinking:
“Ughh, why did I come? How do I even get comfortable in this chair? At least I’m not squished on the couch. Did anyone notice that full body spasm? Oh great. And now my hands are shaking. Better put my drink down before I spill it. At least it isn’t red wine. Of course not, because wine is a trigger food and 8 of 10 of my medications don’t party well with alcohol.”

See, isn’t this fiesta turning out to be fun?! But don’t worry about the NO DRINKING POLICY. Your brain fog keeps you so fuzzy and clumsy on a regular basis that you’ll fit right in with your drunk buddies!

2. Polite Conversation
Look at all of those healthy attractive people around you playing ping pong with their witty dialogue. “Hmmm? What? Oh, no that’s not a fashion statement. That’s called a compression sock. Thank you so much for noticing. Yes, those are my favorite shoes…I guess. I know, I always wear them, don’t I? Ha, ha. You are so observant. You know, you should really go bird watching sometime- I hear that is a great hobby for people who enjoy staring.”

See, you can play this game of witt too. What a wonderful party!

3. Smile
When in doubt, smile.

Always keep them guessing. When your pain is on red alert and your brain is on complete shutdown, SMILE!
It tells people that they can relax and have a great time no matter how sick you are. You can always go to the ER later, tonight is for celebrating!

So flash those pearly whites and watch your friends dance, karaoke, tell work-related stories, and get jiggy. They’ll remember you being a sweet, saint-like creature, and little did they know you were just half-conscious from pain. Talk about a party trick!

Nope, parties just aren’t as fun as they used to be. And please don’t go around asking people what I USED to do at parties… (seriously, don’t). But it’s still great to get out and make memories whenever we are able. And when you are not able, know the party won’t be the same without you.

Merry Christmas, happy holidays!

This is one of my favorite pieces I published in 2014. A snarky spin on the old Emily Post / “Miss Manners” columns from the 1950’s.

Emoticon Withdrawal

emoticon-under-stress

I got a new working phone yesterday for my birthday! Woot woot!
I’m still playing around with it, but I have to say that it’s kind of stingy on the emoticons.

You don’t realize how far down the emoticon rabbit hole you’ve gone until all of those little faces are suddenly ripped from your life like a big yellow blur. (Insert sad face here)

Goodbye winky face: you helped me keep my foot out of my mouth so, so, so many times. (insert yikes face here) Now, I’ll have to rely on the ‘LOL’ to save me from myself.

Farewell Tear face: How will anyone know I’m sad? Words just don’t do what one little tear face can.

Mr. Smiley Face, I will miss you the most. Your good old classic “I’m smiling” demeanor may be overused, may at times be the inappropriate emoticon for people to utilize and get on my nerves (rolling eyes face), but you never get old. Keep on smiling, Mr. Smiley!

(Insert 2 laughing faces, winky, and blowing kiss face)

Yep, I would have nailed those emoticons (thumbs up symbol to myself).

No Spoon for you! Graphic

No Spoon for you

It’s “Wordless Wednesday” again, and here I am cheating (how can I resist you, words?).

If you’re confused about the spoon reference, those of us with chronic illness measure our energy with “spoons” ( See more here on: 10,000 Spoons, If Only: Why the chronically ill love Spoons). If life were the Soup Nazi from Seinfeld, this month, he would be yelling out his classic line at me, chronic illness style: “No Spoon for you!”

Not even one??

Harsh man!

I hope you’ll have better luck.

“NEXT!”

 

Spoonie Mario, Level up!

Spoonie Mario Brothers

I hope you are leveling up today despite the evil critters coming to get you and attacking your body. Don’t you wish there were some extra mushrooms or flowers around in the chronic illness game?

10,000 Spoons, if Only… Why The Chronically Ill Love Spoons

Fire Brick Road: poem

~Fire Brick Road~

Down this yellow brick road of fire and pain

There are things that you’ll learn and there’s knowledge you’ll gain.

*

You learn people prefer when you’re funny instead

Of telling the truth about how bad things get.

 *

You’ll figure it out that folks get annoyed

When you tell them you’re hurting when they’re feeling joy.

 *

If someone asks about your health facts,

You must pair each truth with a blessing you have.

*

Otherwise, they will think that you are pathetic,

Even though they may really seem sympathetic.

*

Make sure to be cautious about each complaint,

You’re “sick” now so people expect you to act like a saint!

 *

A bit more advice as you walk the path:

You’ll subtract a few friends, so learn some quick math.

 *

You’re just not fun like they remember,

But hang on to the ones who will love you forever.

 *

If you are grateful, then you will do better

The things that are negative really can fester.

 *

If someone else tries to meet a need,

It’s best to say “thanks!” and learn to receive.

 *

This yellow brick road of fire and ice

Has more stuff like: Doctors, and money, and guilt… OH MY!

 *

But on this road you aren’t alone

God’s with you, and others who limp it in toe.

 *

So when you are ready just reach on out,

Someone will be here; there’s always traffic on this route.

-by A Body of Hope

*************

Yellow Brick Road painting| by Artist Andrea on Etsy | "Fire Brick Road Poem" #RSD #CRPS Nervember Invisible illness. chronic illness. Spoonie. Wizard of Oz. Tongue and cheek poem about how to live with chronic pain. #abodyofhope

Yellow Brick Road | by Artist Andrea

Thank you to Artist Andrea for allowing her awesome Yellow Brick Road painting to be featured. Please go buy one of her unique original pieces from Etsy. Many of her paintings have the spirit of Frida Kahlo. Check them out!

Pajama Chic: Fashion

Because if you are going to be laying around wearing the same clothes for several days, they might as well be adorable clothes, right? Even when I’m in survival mode, being carted off to the hospital, I’d like the nurses complementing me on my robe, ya know? This is me aspiring to a certain image of chronic fabulicioushness.

Firstly, I’m thinking turbans would be an excellent, practical (and super chic) choice for my bedbounders fashion collection. A turban would keep my hair from getting matted and keep those pesky stray clumps to a minimum (you know what I’m talking about, chronic gals). Also, I want to look like Audrey Hepburn on holiday.

headwrap | ladysmay . "Pajama Chic" #Spoonie

headwrap | ladysmay

 

 This Etsy shop mademoisellemermaid has so many cute things for a Spoonie.

 

Next, let’s talk eyewear. I happen to use some intensive eyewear on the regular, so an eyemask is my best friend along with lightweight shades. PS, the #1 best eye mask is this style because it bulges outwards around the eyes so it doesn’t touch- allowing for blinking and your eyes can breathe without getting gunk on the mask. It doesn’t bother your nose, and the backing is velcro to fit any head size comfortably. I happen to be very picky about my face masks and have several different types. This is my very favorite for comfort. And look, I found a cute one on Amazon!

Sleep Mask | City of Sleep on Amazon. "Pajama Chic" #Spoonie #Fashion

Sleep Mask | City of Sleep

 

Well, I don’t yet have a kimono, but I FEEL like I already own one. You either are a kimono person or you aren’t, and I definitely hear my kimono song calling to me. The song sounds sort of like a circle of drums from which wafts a scent of patchouli mixed with body odor. MMMmmm!

 

Kimono | ASOS "Pajama Chic" #Spoonie #fashion

Kimono | ASOS

 

Now for Palazzo Pants. I heard somewhere they look good on every body type. I also like the Harem Pant idea because I end up in such crazy positions due to my Dysautonomia/POTS, I think they would really live out their Harem pant destiny on my legs if I owned a pair. Mostly though, I just want to know I’ve got something cute going on under my covers. I already have one pair of Palazzos and they are getting it done! (Not sure what “it” means, but the pants are fab and my man always makes nice remarks.)

Palazzo Pants | Palazzo Fashion "Pajama Chic" #Spoonie #Fashion

Palazzo Pants | Palazzo Fashion

 

Harem Pants | Napat Clothing "Pajama Chic" #Spoonie #Fashion

Harem Pants | Napat Clothing

 

I didn’t have many stretch pants until recently, but I’m getting into them now. Anything that makes me look like I am on my way to the dance studio is my kind of delusional clothing. Just laying here on the floor (P.O.T.S.) because I’m so worn out after Swan Lake rehearsals… If you are wearing them outside of your home however, I guess the rule is: your tush should be covered. I’m an inside cat, so I can do what I want with my tush, thank you!

Leggings | Legit "Pajama Chic" #Spoonie #Fashion

Leggings | Legit

 

Leg warmers and socks. For myself and for many people with chronic health concerns, footwear is a sensitive subject. I’ve gone through all kinds of phases with my footwear because of Complex Regional Pain Syndrome. If you need compression gear of any kind, Amazon.com really has the very best selection. Legwarmers give an added layer of protection and they also help transport me back to my ballerina days. (Is this what my counselor meant by “Guided Visualization??”)

Legwarmers | Grace and Lace Co. "Pajama Chic" #Spoonie #Fashion

Legwarmers | Grace and Lace Co.

 

Slippers, yay! Or you can refer to them as “house shoes” if you are fancy like myself (ehem). This one is tricky since my feet are so picky about what they want on their feet from one day to the next. I was like that BEFORE I had anything wrong with my feet though (bu-dum-ching). Shoe fetish humor. It can be difficult to find slippers I think I could wear, but these might work for me and they are very cute, too.

 

It’s always fun to look at clothing and get inspired. And even when we are feeling bad and cannot go anywhere, I’ve been told by other Chronics it helps them feel better about themselves to put effort into their appearance just for themselves. Do you find that for yourself? What are your favorite fashions that make you look good and feel comfortable also? For now, for me, these might be aspirational, but maybe in time, I’ll be a turban wearing, kimono sporting goddess of my bedroom.

*

If you enjoyed this post, check out my sassy fashionista Spoonie friend at Sublime Mercies.

 

Warm Milk: Physician Frustration

This is a clip from the 1990’s television show Twin Peaks. This is how I feel dealing with physicians the past few years. It makes me laugh inside every time I watch it!

The struggle to communicate. The cutting off of life-lines and other doctors’ knowledge when you know it is needed. The times the condition has been worsened by negligence, yet we still say “Thanks!” and pay our co-pays. (Watching him sign that gratuity is SUCH a riot!) Although I’m usually the one to say, “I’ve heard of you” to the doctor, I’ve gotten the old thumbs up from them, out the door, as they appear happy to be through with my appointment. Ha!

The past few years especially when things have been very dire, getting one prescription or one piece of advice is so much like a glass of warm milk for Agent Cooper’s bleeding gun wounds. Sometimes you can advocate well for yourself and communicate on your own behalf clearly, working with your doctor who cares about your needs, and sometimes the situation doesn’t allow for that. Yet we still go in with so much hope that this appointment will be the one that will finally help; when the doctor doesn’t have ALL of the magical answers to solve everything wrong, it can be completely deflating.

Doctors are not gods. We put them on pedestals and then get mad when they don’t meet the high expectations we set for them. Some of us go in with very challenging health crises and when our doctors cannot make it right, we get very angry and frustrated at them. The entire situation is frustrating.

I have come to rely more on my faith in God the past few years over my faith in doctors or my faith in my body, even. Having a compassionate doctor that you feel cares- is a start. I’m very fortunate to have found one of those this year. But I still can’t get “Warm Milk” out of my brain!!!

***********

This is a good article about communicating with your doctor from FindingOutFibro.

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Thumbs up!

Crutch Life

We who have been “crutching” for years bring you this quirky collaboration from College on Crutches and A Body of Hope. Being veterans of crutches, we have some funny and ironic insights to share. Here’s the wobbly truth about life on crutches:

Crutches are Hazardous by Cluestolife Funny Cartoons Blog | from "Crutch Life" funny article #Spoonie #crutches

Cluestolife Cartoons Blog

~Crutch Life~

– 2 Crutch Myths: #1 Crutches = terrible armpit burns. Myth #2 Doors are the worst.   (If you are crutching properly, your pits will be spared. And doors are not enemy #1, but stairs do like to laugh at you. Bwahahahaha!)

-New rubber stoppers make awesome stocking stuffers. Thanks Mom!

-For every worn out left shoe you own, there is a pristine right one. (They should really sell single shoes for half off.)

-Crutches are wonderful for inspiring unique Halloween costumes (ie. Attaching ninja swords to your crutches and dressing in all black so you can win your work Halloween costume contest. Take that disability!).

-Whenever anyone runs past you, shout, “Show off!”

-Dryer sheets, puddles, and small objects on the floor are the crutch’s worst enemies. (Along with Gravity, of course.)

Crutches are Magnetic:

-Crutches mean you have something in common with most of the population, and folks love to tell you how much they understand you:

“I had a toenail surgery once, I know all about crutches.”

“Oh, I was on crutches for 3 days before. I totally know just how you feel.”

-Crutches invite the wildest stories people have of how they got injured:

“I had to use crutches after I was bitten by an amazon jungle slug I stepped on while doing yoga in my back yard.”

“I was on crutches after I broke my foot in the ‘Running of the Bulls’ in Spain. I was too drunk to remember it though! (He says, winking).”

-You can never go anywhere without someone asking what happened to you.

-“You’re so lucky! I’ve always wanted to be on crutches. It looks like so much fun.”

People often think it would be fun to try them out, and then when they do, it’s pretty entertaining to watch them realize how much work crutching truly is.

-Everyone and their mother asking, “Oh sweetheart, do you need help with that?!” even if you’re just carrying a piece of paper from the printer.

-Walking into a store and immediately being asked by the greeter if you need a wheelchair, and people in electric scooters suggesting you get on wheels, yourself.

-The kid you babysit for gets his own little pair of crutches, just so he can be like you.

Pros & Cons:

-One of the few crutch perks is that you can grab objects from a few feet away without getting up. Just sweep them over with your crutches.

-There should be a workout program utilizing crutches. Great for cardio and they really strengthen the arms and core. Lookout P90X!

-Rain and crutches don’t play well together; maneuvering a slick floor is a crutcher’s adrenaline rush.

-If anyone thinks disability is weakness and can take advantage….. you always have 2 handy weapons!!!

-It’s hard to hold someone’s hand and crutch at the same time.

****************

Learn about Rwanda’s “Crutch Month Challenge” and how you can help get disabled homeless men and women off of the streets.

What is Complex Regional Pain Syndrome and why did it cause young women like CollegeonCrutches and aBodyofHope to become disabled?

Party Etiquette for Sassy Spoonies

Original Painting of Glamorous Woman by Kim Legler on Etsy | Party Etiquette for the Sassy Spoonie

Glamorous Woman | KimLegler

Living with constant chronic pain or chronic illness is no party, but you may have been invited to a few. Here are some ideas and tips to help you make it through as we enter into the holiday season.

1. No Cocktails
I know, I know, at your next party, you may be thinking:
“Ughh, why did I come? How do I even get comfortable in this chair? At least I’m not squished on the couch. Did anyone notice that full body spasm? Oh great. And now my hands are shaking. Better put my drink down before I spill it. At least it isn’t red wine. Of course not, because wine is a trigger food and 8 of 10 of my medications don’t party well with alcohol.”

See, isn’t this fiesta turning out to be fun?! But don’t worry about the NO DRINKING POLICY. Your brain fog keeps you so fuzzy and clumsy on a regular basis that you’ll fit right in with your drunk buddies!

2. Polite Conversation
Look at all of those healthy attractive people around you playing ping pong with their witty dialogue. “Hmmm? What? Oh, no that’s not a fashion statement. That’s called a compression sock. Thank you so much for noticing. Yes, those are my favorite shoes…I guess. I know, I always wear them, don’t I? Ha, ha. You are so observant. You know, you should really go bird watching sometime- I hear that is a great hobby for people who enjoy staring.”

See, you can play this game of witt too. What a wonderful party!

3. Smile
When in doubt, smile. Always keep them guessing. That’s why they call them “guests”! Or, em…anyway… When your pain is on red alert and your brain is on complete shutdown, SMILE!
It tells people that they can relax and have a good time no matter how sick you are. You can always go to the ER later, tonight is for celebrating! So flash those pearly whites and watch your friends dance, karaoke, tell work-related stories, and get jiggy. They’ll remember you being a sweet, saint-like creature, and little did they know you were just half-conscious from pain. Talk about a party trick!

Nope, parties just aren’t as fun as they used to be. And please don’t go around asking people what I USED to do at parties… (seriously, don’t). But it’s still great to get out and make memories whenever we are able. And when you are not able, know the party won’t be the same without you.

*************

Original Painting of Glamorous Woman by Kim Legler on Etsy | Party Etiquette for the Sassy SpoonieOriginal Painting of Glamorous Woman by Kim Legler on Etsy

Go purchase a fabulous original piece from this talented artist! Thank you so much for contributing Kim Legler!

Message from the artist and from her recovering brother: To keep video game playing to a minimum as it can be harmful to your health and to spend time in nature to promote healing. Twitter: @kimilegler

Emily Post’s Original Party Etiquette Guide

Cancer Kids = TV Gold?

Christopher Kula Crusade for Childhood Cancer Awareness by #abodyofhope blog | "Cancer on Television" article

Cancer, how romantic! Doesn’t everyone want cancer? No?? Didn’t you love that movie about it? What about the new TV show with the cancer kids? Didn’t you read that funny, sexy book about the girl and guy who both had cancer? Isn’t cancer so super in style right now? Well, all these shows and books sure make it seem that way.

That’s right folks, cancer is hip. Young, pretty, cheekboney, fancy hat-wearing cancer: where you always have a boyfriend,  you aren’t really THAT sick, and all your friends come to visit you, showering you with attention. Doesn’t that sound like fun? Never: throwing up all the time-cancer, face and body all puffy because you are so bloated from the meds, surgeries, spinal taps, bone marrow transplants, spending so much time in the hospital your friends get tired of showing up- cancer. Oh man, but that sounds more like the depressing kind of “sick” and that’s more of a bummer….. We like seeing the attractive, uplifting, hopeful kind of sick people who are more like saints than sick.

Sounds pretty silly when you say out loud, huh? Even though these stories are all fictional and can bring some amount of awareness, it’s really important to remember: THEY. AREN’T. REAL.

A REAL story is my friend Chris who is fighting Leukemia for the second time in his 14-year-old life. He was just a little kid the first time he went into remission and fought long and hard back then when they celebrated his survival. At 13 doctors told him his monster had returned with another 3 years of treatments. THREE MORE YEARS!!! He has been nearly living in the hospital with REALLY not fun and definitely sick-making, often painful treatments, sometimes surgery, missing his freshman year of high school: Cancer.  His parents are in it with him for the ride. Chris is a dope guy and would definitely be a STAR in his own blockbuster movie, but we don’t want the movie to be about cancer!

Christopher's Crusade. Fight like a kid | Cancer on TV article #Leukemia #childhoodcancer #abodyofhope

Any of us can only really imagine what that would be like growing up. What were you doing when you were 14?

I’m guessing it isn’t like summer camp as portrayed on a recent TV show. And it’s probably not like making a wish so outrageous you can fly out of the country with your funny sexy cancer girlfriend like in a popular book/movie.

This month is Childhood Cancer Awareness Month. If you want to do something to help Chris, it would mean so much to him and to his family if you just Like his Facebook page Christopher’s Crusade. And if you do, you can ask Chris what he thinks of these shows and movies, too.

Share what you think of modern cancer fiction in the comments section. How do you think it effects our awareness?

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