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.

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.

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Beauty: Peeling Back the Layers

Finding out Fibro’s writing has inspired me in such a beautiful way. She is always pushing herself to dig deeper, to persevere despite chronic pain and setbacks with her health, and she is so willing to pour her soul onto the page, sharing it so generously with her readers.
This is one of her most intimate, raw expressions of her truth pouring out; my favorite of her posts. I’ve been saving it to share with you.
Hold onto your socks!

Finding Out Fibro

I’m still getting used to the idea that I can’t be fixed, because I’m not broken in the first place. Everything good about me is still here. I am not worth any less than before I became ill.

Harder to get used to is the idea that I didn’t do everything wrong; that this is exactly where I need to be right now.

Hardest of all the lessons I am learning is that I too deserve to be happy and loved. I even deserve to love myself, for that matter.

Crazy how notions that seem so simple and straightforward, things I tell people all the time and think I understand, will refuse to fully sink in for myself until the right moment.

It took me until this year to realize that my vision of my own relative unattractiveness was based on something false all along, which is the idea that women (or anyone…

View original post 1,663 more words

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

 

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

Turban | Mademoiselle Mermaid

 

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

 

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

 

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

 

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

 

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.

 

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.

slippers | Hill Tribes Shoes

 

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.

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

 

You’re Pretty and Your Hair is Magic

Maya Angelou

I recently watched Dark Girls, a documentary on African American culture. The focus was on prejudices based on skin tones within the black community and how this leads some women to devalue their skin and hair. Each women told a personal story of how she was disgraced by the shade of her complexion. Of course I am aware of this cultural phenomenon. However, hearing women of all ages share their intimate stories puts it in a perspective that would make any woman emotional on behalf of these challenges.

When I was a child, I was so envious of dark skin. First, you should know, growing up, we were the only white family on our block. I would swim with the neighbor children and watch the sun bounce light off their dark chocolate skin. On the playground, so many of the girls wore the plastic marble ball bands to hold their braids- which seemed to stand up, defying gravity. My little sister and I were so jealous of those hair bands! (Along with gravity-defying hair, of course). Hair that could twist and mold one moment and appear soft to the touch the next.

We got our wish for those marble ball bands once, but our braids fell limp. I suppose I thought the magic came with the bands. But that experience made me realize the girls on the playground just had magic hair that I would never acquire.

Everyone in our neighborhood had a special unique skin tone all their own.

Back at my crayon box there weren’t enough crayons to express all of my neighborhood playmates. Only one color to express my family though: Peach. When I asked what color we were, my mother said we are “white.” Confused, I responded, “No, we are peach,” and I ran to get the correct crayon to prove it.

Our Barbies we had collected up until that point were all the same color: Peach. The only variation was hair color. At this point, I asked for more colorful Barbies. That Christmas I got a Hawaiian Barbie. She had coffee skin, almond eyes, and long black hair. She was my favorite Barbie. My mother remembers this story and says at that time Hawaiian Barbie was the only non-Caucasian-looking Barbie she could find.

I’m really not trying to open up a can of worms with this entry. However, what struck my heart the most in the documentary was the little girl of around 3 or 4 who was asked to identify the ugliest and dumbest child. Each time, the African American girl pointed to the darkest of all of the images. And the prettiest, smartest child she believed was the lightest image. That experiment is a heart-crusher. If not, go get your vitals checked.

Below is CNN’s version of a similar experiment.

Without knowing the history and socioeconomic influences, she envies the light skin girl with the light hair and light eyes. And without knowing the history and socioeconomic influences, I envied the girls in my neighborhood with the chocolate brown skin and the magically soft hair.

Why do we always want what we don’t have? Why can’t we appreciate the beauty of others without depreciating our own beauty? Why do we grow up and cast judgement on others for being slightly different from us? I suppose this is the human condition. But just because it’s how we lean doesn’t mean we can’t learn to stand up straight, you know?

Please tell someone they are beautiful today. You truly are.

*****

“You are altogether beautiful, my love; there is no flaw in you.”

Song of Solomon 4:7

Party Etiquette for Sassy Spoonies

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

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

In Her Shoes: poem

Stiletto Memory

~In Her Shoes~

She asked me in a nice voice if I would wear her shoes.

It wasn’t the best choice, but how could I refuse?

~

The moment they slipped on, I swear I heard a crack.

Then something within me sharply turned to black.

~

The shoes no longer held me up as I fell to my knees.

I could not bear the weight of my dear friend’s disease.

~

She got down on the floor with me and held me for a while.

She put the shoes back on her feet and then she forced a smile.

~

I don’t know how she wears those shoes!

She must have so much strength.

I’ll never understand; I wish I could help her bear the weight.

–aBodyofHope

*********

This was written in honor of all of the women who live with invisible illnesses and invisible pain. May they have friends who try to understand what they face.

Invisible Illness Awareness Week 2014

*****

Poem featured on The #Spoonie Daily E-Magazine

and InvisibleIllnessweek.com

Will the Real Me Please Stand Up?

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).

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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.

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.

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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