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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.

If your body is a boombox, and the nervous system is music…

music-1

Think of the nervous system like a boombox up on your shoulder, 80’s style, playing sweet jams at all times. When the body is healthy, balanced, and running smoothly, the music playing from your system’s radio station are your favorite hits at the perfect volume, and your drop-in harmonies are totally on point.

giphy

When the nervous system is out of sync, those beats flowing from your station are tragic- like the song you hate most, on the loudest setting, playing over and over again. You can’t change the station, no matter what lengths you go to!

When you have a chronic neurological condition like Parkinson’s, Multiple Sclerosis, Complex Regional Pain Syndrome, or Postural Orthostatic Tachycardia Syndrome for example, it’s as though someone traded out your cool retro stereo system for an old broken down radio. You can play records on it sometimes, and it’s AMAZING to listen to any music again when you’re not in a flare or a relapse, but even then, all the records have scratches on them, so the music is constantly skipping and warped. The stereo’s wiring gets so bad over time that the record player doesn’t work anymore, and your radio only receives static.

giphy1

A chronically malfunctioning nervous system is like listening to a broken radio stuck on static at full volume constantly. 

When the “music” or the nervous system’s wiring is flowing properly from the brain throughout the body, pain receptors react to appropriate painful stimuli, telling us when there is a problem, and the pain subsides when the problem is resolved. When we have “faulty wiring” we may experience hypersensitivity to touch, sound, light or even smells so intense that it can cause a severely painful reaction. Think of raw wires on the end of electronics sparking and flaming just to the slightest touch.

0205-boeing

The malfunctioning nervous system might react to normal stimulus with severe increased pain, increased stress may cause a seizure, or in others severe tremors and body spasms may occur. For some with POTS, (Postural Orthostatic Tachycardia Syndrome), a loud noise or changing positions can cause the body to completely check out, going into fight or flight mode, and beginning to pass out, or passing out completely.

Going back to the stereo analogy, imagine being invited to a party where the DJ had a broken stereo system, playing static on blast or his stereo catching fire in front of everyone. That’s exactly what it’s like to live with a chronic neurological disease…well, sort of.

giphy2

Meditation, spirituality, organized religion, trying to improve sleep, and other stress reducing efforts are ways we try to turn down the knob on the stereo. Medications, alternative therapies, eating well, surrounding ourselves with positive support are all ways we can continue turning the knob down little by little. The static kicks out on full blast each day, and we use our tools to adjust or manage the incoming noise levels. We may not have the ability to turn the station away from the blaring static and back to music, but we can attempt to turn the volume down so it isn’t blasting constantly every day.

Invasive and surgical approaches to treating neurological diseases are like kicking the side of your stereo to try to get it to work again. Jolting it hard enough may coax the system to finally play music once again, or you might kick it so hard that you completely break your stereo. For many, surgery and invasive treatments are worth a risk of causing additional problems for the possibility of returning to good health and functioning.

That’s my super-scientific explanation of the nervous system, and how it’s exactly like a boom box. So…. this analogy might not end up in a medical school text book, but if it helped anyone better understand an aspect of neurological disease, or put a smile on your face, then virtual high fives all around!

giphy3

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).

The secret to longevity is…don’t vacuum

This was inspired from the blog post: Take my Advice, I’m not Using it written by Mark from TheGadAboutTown.com who is always an inspiration and an encouragement.

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On the Sunday before the wedding, I suggested to my mom that she might want to spend as much of the day as possible resting before such a stressful week, doing so much for everyone. “You are crazy! I can’t rest a full week before the wedding. What good is that going to do me?!” she laughed at me. And I laughed with her.

The differing perspectives reminded me of the quote, “The secret to longevity is getting a chronic disease and taking care of it.” -Oliver Wendell Holmes (who lived to be 93 at a time when men died at 40). At what point do we shift from our bodies listening us, to listening to our bodies?

Yesterday I shared that I was breaking up with my body; that’s actually a feeling I’ve had for a while now. It doesn’t mean I’m not listening to her, it DOES mean she isn’t allowed to bully my spirit any longer. I used to bully her though. I used to push her past her breaking point all the time. Both before and especially after CRPS/RSD set in.

I can be relentless when I am focused on something. Whether it’s a person, my career, a passion, a dream, or a goal, I will drive all of my energy into it or them. In my past life, B.P. (before pain), while at work one day, I was set on vacuuming the floor. Simple. The vacuum belt needed changing first, but the belt I special ordered for the vintage model was just a smidge too small. Too bad. This floor was getting vacuumed today. I put both feet on the vacuum and pulled the rubber belt with all of my strength to make it fit! POP!!!! The metal vacuum brush cylinder sling-shotted me right in my face! The pointed end hit me hard enough to knock me out momentarily, and missed my left eye by a hair. I got 11 stitches, a black swollen eye for a couple weeks, and a cool scar across my eyebrow…from a vacuum attack. (Everyone wore a metaphorical I’m with stupid t-shirt while it healed.)

What does that worthless vacuum have to say? There are limits. We can force it, but there are consequences. This wedding coming up (in 4 days) could set me back with my health for a while. But it’s once in a lifetime, it’s one day, and this is most definitely worth it. Sometimes the benefits outweigh the consequences and risks, and sometimes, it’s just a little extra dust on the floor and it isn’t really worth a scar on your face.

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Please share a moment you pushed it too far and life or your body reacted harshly. I’d love to hear from you!

Sage Advice

Kathleen from Creating Through the Pain shares a heartfelt account of how her God-Father guided her after diagnosis:

Creating Through the Pain

words_wisdom

Pain wouldn’t be so bad, if it didn’t hurt so much. My Godfather said these words of comical wisdom (he had many) at the end of a particularly grueling physical therapy session after my initial diagnosis of Reflex Sympathetic Dystrophy (RSD).

He made me laugh when the best I could do was a grimace. Once I started laughing I could not stop until my body doubled over my walker and I had tears in my eyes. I am sure people around me thought I was losing it! But I think that the irony of laughing amidst all that pain just set something off in my head.

I am very competitive and since I was lousy at sports (yup, I was the one always picked last for gym class—but I’m not bitter…maybe a little), I focused on academics. That competitive part of me kept climbing higher on the corporate ladder and…

View original post 788 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 . "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.

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

 

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.

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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!)

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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?

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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”

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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).

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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.

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