Blog Archives

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.
Advertisements

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).

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?

You Know You’re a Spoonie When: fun list

I’m not Jeff Foxworthy but some things about being health impaired are so ridiculous, we might as well try to laugh. Here are a few I thought of along with some additions from my Spoonie friends. Please share yours in the comments section!

10,000 Spoons Poster

10,000 Spoons Poster

You Know You’re a Spoonie When:

-You have more cute socks and pajamas than sexy lingerie’ and heels.

-You are on a first name basis with all of the local pharmacists.

-Your family uses YOU as their excuse for getting out of things they don’t want to do with other people.

-If a stranger comes to your front door, you just hide until they go away.

-You have more salts in your bathroom than the DMV road crews in the winter.

-Your spouse/partner fills your meds for you as a romantic gesture of his/her affection (goodbye flowers!).

-You have become mysteriously artsy/crafty over time since diagnosis (was increased creativity one of your symptoms?).

-Your doctors and favorite nurses are on your Christmas card list.

-You know where all the elevators are wherever you go, yet somehow they always end up super far away from your actual destination (what is that about anyway??).

-Your pets seem to have a better understanding about how you are feeling than anyone else.

-Your loved ones have a favorite joke about your disability that makes you laugh. When they say it in public, people think your loved ones are horrible.

-You have more hair in your bed, in the drain, and in your brush today than is actually on your head!

-You start to talk to your Spoonie friends online more than you talk to your friends and family.

-You’ve learned so much about medicine that your doctors talk to you like a colleague instead of a patient.

-You’ve developed heightened super-sonic senses. You’re sure you are a super hero and keep looking for a lit up spoon signal outside. (To the sick cave!)

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

From my Spoonie friends: You know you’re a Spoonie When…

-All the people who work at the drug store and pharmacy know you and your family by name. -Molly Williams

-Whenever you are in public people stare. You are starting to get a complex that you have grown extremely good looking. inspired byLiving Life Beyond Disability

-You joke about going to see your “drug dealer” a.k.a. your pharmacist. -April Hughs

-When I rate my pain 1-10 and 7 means I’m having a GOOD day. -Keely Blackburn

-You know all the different medications and their side effects. -Julie Pierpoint

-You have to bite your tongue when a friend keeps complaining about his/her allergies. inspired bySick and Sick of it

-You talk to your doctors, nurses, and pharmacists more than you talk to your own family! -Allisin Wonderland Hatfield

-Your deaf and blind dog thinks your crutches are trying to attack him! -Tegan Bert

-You go to hand your pharmacist the prescription card and she says “Nah, I remember you have one of those.” -Christine Brannon-Miles

-You make fun of the television commercials about medications that “help” symptoms like yours. inspired byMy Fibrotastic Life

-When your mum says you will never get a flu because all of your meds will probably knock it out of your system first. -Marika Dolinski

-You use ferocious animals and monsters to represent your illness. –inspired by Elle and the Auto Gnome

-You are so tired of explaining what’s wrong with you that when anyone asks, you distract them by responding: “where did you get your hair cut?” or “do you garden?” -Melanie Barker

What are yours?

***********

10,000 Spoons Poster

10,000 Spoons Poster

If you enjoyed the above poster or want to know what a “Spoonie” is, read the article it was based on: “10,000 Spoons, If Only! Why the Chronically Ill Love Spoons”

*********

This was featured on InvisibleIllnessWeek.com!

Will the Real Me Please Stand Up?

"Will the Real Me Please Stand Up?" #Spoonie #Humor #Disabled #adapting "Phrenological Chart of the Head of the Country" (1887) by John Wilson Bengough shows then Prime Minister John A. Macdonald in a comical light.

Phrenology Head Chart

Facebook asks me to take these ridiculous quizzes. Am I a pair of stilettos or a unicorn? You know the ones; they are meant to be fun… Like personality quizzes a Psychology dropout on pot (lots) would have put together.

I can say that I like potato chips more than honey, but am I answering the question this way because I now have low blood pressure and crave salty food all the time?

On a lazy afternoon would you go hiking, hang with your friends, or lie around and do nothing? Well, now that I’m sequestered to bed in a dark quiet room on account of my “hot messness,” (intractable chronic migraine & csf imbalance) how am I meant to answer?

I think of the many lives I have had and I am grateful for each one. Because I’m a woman, I know that every woman reading this has multiple lives. Many great-balancing women juggle all of their lives at once, but my lives are like a cat’s. Each one is unique and wild with stripes and spots. While each life ends and another begins, my soul remains constant. Once I could tell the pothead quizmaster exactly which kind of fabulous shoe I prefer without my chronic pain condition in my leg confusing my answer (fyi: wooden strappy wedge).

Do I answer a personality quiz without taking my ailments into consideration? But those things are just what I do, they are not who I am. I am not my illness and my illness is not supposed to define me– yet it’s really good at influencing just about every part of my life now. What about becoming a mom and how much a woman’s life changes when she has a baby? You are still you, but everything else in your life is now changed forever. And the truth is, my personality HAS changed in some ways because of these hardships…how could I not grow or evolve?

I’m still the person I was. I still love all of the things I can’t do anymore: the hiking, the kayaking, wearing fabulous high heels (probably not simultaneously)…I don’t pine away 24/7, but when I’m faced with the specific question: Who are you? I do feel fractured.

Oh well… I’m fractured, I suppose. Oh, and I’m also a Dragon, apparently (thanks quizman). I wanted to be Fairy. Well, maybe in another life (wink).

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

This was a piece I contributed to Project Naked. This is a great program/blog in which women from all backgrounds, ages and walks of life share stories about their bodies. All women are invited to contribute. They are very hopeful to hear more from those with ongoing health concerns as the relationship with our bodies is so unique. Follow this link to read my Poem “This Body” and other women’s powerful works.

Here you can learn more about submitting one of your own pieces to: ProjectNaked.

Leg Warmers + Dyslexia = All Gain

“No Pain, No Gain” -Jane Fonda. My sister and I were Jane’s leg warmer partners in crime and side cramps. My sister’s journey with Dyslexia told a different story about pain and gaining.

As my mother would begin Jane Fonda’s warm up on the VHS, my sister and I would be changing into our bathing suits over tights, scrunching up Dad’s long socks (they came up taller and on us looked like those leg warmers worn on the video- we thought). We would get into mom’s blue eye shadow until it was more like forehead shadow. Our hair in HIGH side pony tails mimicking our favorite backup Fonda “fly girls,” we were finally ready to show these ladies how it’s done!

This was so common in our home that we wore out the Jane Fonda video tape. My mother always laughs at this memory of us, yet my sister and I take our Jane Fonda VERY seriously- so no laughing people! We were little girls then, but Fonda and her hotshot posse’ of long-legged sweat band sporting 80’s workout divas made tiny me and my little sissy feel extra fierce.

"Leg Warmers + Dyslexia = All Gain" A funny fabulous journey through overcoming learning disability. #Sparkle #dyslexia #bully #makeitwork #janefonda #fierce

Jane Fonda

Years later in school, my sweet little sister would not be feeling so fierce any more when she was the target of bullies. They called her: illiterate, moron, idiot, retarded, and more names I know she has buried deep and hopes to forget. She has a learning disability called Dyslexia. She is severely Dyslexic and she didn’t really catch onto reading until around the sixth grade. She thought reading would be her ticket to being “normal” and making friends. The better she could learn to read, the fewer panic attacks she would have when teachers would make her read aloud in front of class “for her own good.” And fewer tears she would cry because of nasty name-calling jerk wads.

She went through a whole lot of emotional pain on the playground, pain when she got any tests back, and pain in her bedroom alone after school- yes, she had pain… But my sister would tell you her GAIN had nothing to do with her pain. Her gain came from her time in drama class. She gained motivation to stay in school through High School performing arts programs. She gained trust back with her peers when she sang in the chorus. She gained confidence in herself when she was the lead in the school play. She gained independence when she put herself through college by winning talent competitions in scholarship pageants. She has represented organizations like Reading for the Blind and Dyslexic along with advocating for school arts programs as both made such an impact for her. And yes, in case you are wondering, the shy little girl who couldn’t read did graduate college. Boom shaka lacka. Hip roll Fonda!

She continues making gains every time she reads a word and each day she goes to work. She makes gains by proving her former teachers wrong, those bullies, those mean snotty classmates, tutors, and everyone who must have been so dumbstruck by her sparkle that they all acted like fools around her, I suppose.

It wasn’t in all the hardship that my lil’ sis found her fabulosity, it was in the moments like dancing in front of the television to Jane Fonda’s Workout video. Fonda fly girls for life xx.

****

This entry was in response to a Daily Prompt from WordPress’ Blogging site:

Do you agree with Jane Fonda’s favorite exercise motto, “no pain, no gain?”

http://dailypost.wordpress.com/dp_prompt/pains-and-gains/

www.whotalking.com for photo

The Name’s The Thing

Very funny blog post from a woman who names inanimate objects- even body parts, after transplant.

Random Acts of Snark

index

Have you ever named an inanimate object? (Your car? Your laptop? The volleyball that kept you company while you were stranded in the ocean?) Share the story of at least one object with which you’re on a first-name basis.

First off if anyone says no then they are a liar… A LAIR… People name their cars all the time… by the way her name is Mary.

I’m all about alteration… for example, My first Kindle was named Kellan (after Kellan Lutz), my Lap is named Lydia… my new Kindle Fire has an odd name, “This Kindle is On Fire” (and every time I see it I’m singing Alisha Keys….) But I can go one further. For people who follow this blog know that I have had my fair share of health issues: Multiple Myeloma and two liver transplants… why did I bring that up, because I have even names my…

View original post 375 more words

Life with an Illness

*Tips and tricks on how to get through life when you have a chronic illness*

My Instruction Manual

I never learned how to live, not really. So I decided to write a guidebook, an instruction manual” for how to be happier, healthier and more productive.

A Heart For Chelle

A raw and honest account of life on the heart transplant wait list

chronicjoymin.wordpress.com/

Radical hope. Compassionate change. 501(c)3 non profit

Athlete On Steroids

Powerlifting, fitness and life with adrenal insufficiency

Holding Patterns and High Tea

all my benevolent monsters

CHRONICALLY COOKING 🍳 WITH FIRE

Cooking with Chronic Illness'

On The Right Path

Promoting happiness, while living with CRPS and mental health disorders

cancer killing recipe

Just another WordPress.com site

The Crow Diaries

Life, Love, and Everything Else

painintheBECK

Pain + Perserverence + A Sense of Humor= Living Each Day, One at a Time

The Invisible Warrior

Living, Learning, and Loving with chronic illness

As Ellie

Making the most out of life as a chronically ill teenager and trying to make a difference.

mySestina

glory of words

Eponine Josette

"It's such a liability to love another person."

%d bloggers like this: