Featured Writer: Abigail @babydollabi

::This is a guest post written by Abigail who posts on Instagram as @babydollabi. I’m a bit obsessed with this creature. She calls herself “Chronically Cute,” and omg she totally is. From her gorgeous color schemes, cozy photos and cheeky emojis she is freaking adorable. And STRONG. Check out this feature and then follow her @babydollabi EEEE! She’s so cute!.::

My names Abigail and my instagram name is babydollabi ☺

I was officially diagnosed in 2017 with endometriosis. Due to endo I’ve also developed GERD, exercise asthma and I think I have cfs — I have the symptoms, but none of my doctors will diagnose it. 🤔

unnamed-5.jpg I was glad because I finally had answers for some of my symptoms but I was also sad there  is no cure. 🤔 Now I’m annoyed. I found out in July my endometriosis was severe. It had moved my bowel to the left. I think maybe the combined pill that they put me on makes me worse. So now I have my third operation in 2 years next month. 😱

unnamed-9.jpgAlso, I was told millions of times that my endo can’t cause weight loss and nausea which it has been doing so it annoys me the specialist keep denying it. 😂

unnamed-7.jpgMy favourite self care activities are baths, eating desserts, yoga and actually resting. ☺ My family and boyfriend are the best support most of the time. 😉 My family always takes me to doctors appointments and my boyfriend brings me stuff when I’m passed out from nausea waves ☺

unnamed-8.jpg I cannot live without TV, books, films, baking and desserts. 😂 My favourite colours to use are pink, blue and orange/brown ☺ I like to post outfit posts and baking posts. ☺ feel best when I’m with my family or eating tasty food or shopping or baking. ☺ unnamed-6.jpg

Not Your Typical Nursery Reveal

I’ve survived a stroke and brain surgery. I relearned how to walk and swallow correctly. Pregnancy with symphysis pubis dysfunction (SPD) was worse.

Early in my pregnancy, when my daughter was as big as a sweet pea, I searched for nursery reveals. Everything in a typical nursery reveal looks so gorgeous. Pristine. Perfect. The mother looks ready. She has thought of every detail.

I stopped working (and thinking clearly about anything) at about 17 weeks pregnant, as my SPD started to wear me out. Soon it hurt to open a jar of peanut butter or walk to the bathroom. There were no cute motifs going through my head that made any sense. The pain was unreal. It was a constant, unrelenting pain that you can’t take drugs for.

Well, you can sort of take drugs for it. You can take tylenol — which does nothing. I was on 20 mg of oxycodone to stay out of the hospital the last month of my pregnancy, but the drugs didn’t really work. 20 mg of oxycodone was enough for me to be able to sleep for a few hours and get to the bathroom. I was always in pain. I told my husband it felt like I was being tortured. I would wake up screaming. I cried throughout the day. So, nope, didn’t have a color scheme.

I did make things for the nursery, however. To deal with the pain, emotionally, I taught myself how to sew and make felt flowers. My mother-in-law bought me a sewing machine. A couple weeks after the baby was born my brother (Uncle Jonathan) and his girlfriend (Auntie Debbi) came over and put up all the things I had made for Elro. So, this doesn’t look like those nursery reveals I scrolled through months ago. It’s a lot of color. I suppose if it has any kind of “theme” it would be Frida Kahlo’s awesome spirit. She was my inspiration during those painful days and I have a giant watercolor of Frida on the wall, along with giraffes and cows wearing flower crowns.

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It makes me so happy that Elro loves looking at the things I made her. This bunch of lavender, for example, is above her changing table, and she digs it!

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I’m obsessed with tiny houses. This is just halfway homemade! I bought them unfinished, then added paint and paper and a string of lights.

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ACS-0043I remember being in so much pain while making these felt flowers and using wire and glue to adhere them to this bird cage. It makes everything feel full circle when I see Elro watching the felt birds move in a breeze. I was on a 10 out of 10 of pain that day I made the birds and ended up being treated in the hospital for early contractions because of the pain. What a nightmare. And the pain comes back, but not nearly as bad, every month before my period. But she was worth it.

 

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Part of my deal with bipolar disorder is, I can’t sleep without medication. So my darling husband has spent every night with Elro. When he went away on business, my best friend stayed in this room. So we knew we wanted a bed in the nursery — might as well make it kind of gorgeous, right? It’s a queen bed and very comfortable.

My dog, Sunny, shares this space with her during the day. IMG-1198

It’s not the perfect nursery reveal I was dreaming of when I first got pregnant — but it’s perfectly us, and I love that.

Flirt and Don’t Reverse by Glorianne Rivera-Casanova

::This is a guest post by Glorianne Rivera-Casanova, which was originally published on her FABULOUS blog, Just Press Mode. I fell in love with it.::

Let me paint you a picture: It’s Friday night and you’re dragging your friends to a bar because you know you’ve been working too hard on your midterms, and a little free time might do you some good. As the bar gets louder and louder you count your friends’ drinks because that’s all you can do at this point. No one can hear you. This is when you notice someone noticing you, and damn he’s cute. Your eyes meet from across the bar, and you throw him your flirty smirk as you turn away. You try to keep your shit together even though you are 98% sure he is going to talk to you (what can I say, you’re a confident woman). He’s totally checking you out. Finally, he’s walking your way, and then as your turn towards him, he just keeps walking. He walks right out the door without even throwing you a glance.

I know you wanted this story to end differently, but this time it didn’t. It’s fine though because I’m used to it. See, based on my experience I don’t know when people flirt, because flirting gets diluted in the puddle of bullshit that people say to me on a daily basis. Flirting hides behind the pity that strangers have towards me. Flirting is shackled by the sheer curiosity that lives within society when it comes to women with physical disabilities. In other words, a guy at a cafe asking too many questions about me is usually just that. Yet another dumb fuck.

IMG_5917.jpgI know what you’re thinking: “you should initiate, flirt first, get it girl”, all that shit. Well, that’s easier said than done. Why? Because they probably don’t see me that way (if you have any doubts check out my sexuality post). Thus, all of the cheeky things I say are going to fly right over him. This is why women with physical disabilities tend to be more direct when flirting. Trust me, it works. I’m not advising you to be vulgar just you know, say what’s on your mind. Don’t get me wrong I’m no expert, at all, but I’ve recently figured out that if it’s not going to work out it’s best to know as soon as possible. I have the tendency to be coy sometimes as a defense mechanism for grey areas within a conversation, but that usually comes around and bites me in the ass.  Therefore, even though the coy game is very tantalizing and you have convinced yourself that this is the reason for which you play it. I would advise you, Maggie (testing out a name for the 16-year-old girl), that you should accept the fact that you fear rejection because it’s only human. The faster you do this, the faster you’ll realize that in truth there is nothing more traumatizing than fourteen stitches on an open back wound with no form of anesthetic. In other words, “I only see you as a friend” is a paper cut in comparison to what you’ve been through. So, don’t be afraid to draw on that paper, and leave your mark. Make him, or her, remember you as the girl who wasn’t afraid to speak her mind.profilepic

Glorianne Rivera-Casanova, or Glow, is self-marketing herself as a woman in a wheelchair with SMA Type 2 who has a life, opinion, and story like any other human being. In her blog she speaks for the minority who are disabled, and whose voices aren’t usually heard. With humor and wit, she speaks out against the norms of the societal view of someone in a wheelchair, and attacks where the truth hurts to open the reader’s eyes to an unfamiliar world or to pull another disabled person out of their isolation.

Beyond her life on wheels, she is a senior in Savannah College of Art and Design majoring in Fashion Marketing with a minor in Costume Design. Her skills include pencil sketches and watercolors of her designs, and editing them into Photoshop for a beautiful project that combines traditional and digital art. When sketching ideas for characters of a story, Glow incorporates their personality, interests, and even some foreshadowing into their outfits, because fashion is more than just fabric over one’s skin; in her eyes, it is an extension of one’s self.

 

I Hate The Disabled

This week, when PMDD disrupted my mood, SPD came back from pregnancy’s hell so every step made my pelvic bone feel like I was part wishbone and my husband found me on the floor in the middle of the night from what we now know is an ovarian cyst — my online therapist listened to me cry as I bottle fed my baby.

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I told her I hated my body. It sucked at doing what it was supposed to do.

I told her my marriage was falling apart. (It totally isn’t.)

I told her that I’m a failure for not being able to work a typical job.

I told her that my baby was going to hate me in 15 years because of all my disabilities.

My therapist said something like, “Don’t you have a blog about disabilities? Aren’t you an advocate for people with disabilities? You’re putting someone with disabilities — because that’s what you have, not moral failings — through hell.”

Holy $%*#.

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How am I hearting everyone’s stories on Instagram, publishing work I believe in and telling people to take care of themselves — while I’m absolutely trashing myself? Why do I find my fellow disabled peeps “disBABEled” and I haaaaaate myself?

My daughter will probably hate me in 15 years, but that’s because she’ll be 15 years and 4 months old.

So yes, motherhood involves some oxycodone right now and we’re spending most days in bed. But as June Jordan writes in her brilliant “Poem About My Rights” —

“I am not wrong: Wrong is not my name
My name is my own my own my own”

Every year I think, “I should probably stop hating myself.” Every year I forget to even try. My baby is going to be able to understand what I’m saying before I know it. If I don’t stop hating myself, I will teach her all my self hate — and I refuse to do that.

The first step? Admitting I have a problem. Here I am,  publicly calling myself out for not being a friend to disabled folks because I truly hate one of them for being disabled.

The next step? I don’t really know. I am open to suggestions!

I know that it involves creating things, it involves introspection and forgiveness and I need to work at it fiercely. As fiercely as the way that June Jordan poem ends:

“and I can’t tell you who the hell set things up like this
but I can tell you that from now on my resistance
my simple and daily and nightly self-determination
may very well cost you your life”

 

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Boho Bulletin Board & Vintage Buttons

This project is not for a shy minimalist. This is for a muppet who wants to get organized. I’ve always believed that I was the kind of person who was not able to be clean and organized, and I’m trying to challenge that belief. To get started I wanted a project that was bright, silly, fun — and useful. Tassels are a girls best friend and I made about 116 of them in different shades of coral using white yarn and Rit Dye in coral. Following the instructions on the back I made a group of  light coral strands, medium strands and deep coral strands. You can obviously use any kind of yarn, I just had never dyed yarn before and wanted to try it out. It’s awesome and easy.

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To make the tassels I wrapped yarn around four fingers five times, then cut. Then I folded it in half, took another small piece of yarn and tied it — making it a tassel.

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I used one of my daughter’s swaddling cloths as fabric to cover the board. I sprayed adhesive on it, wrapped it around the entire board, covering the frame it came with. You do have some time to make sure there aren’t any creases but I recommend ironing it before you place it on your board.

Think of the tassel in two parts — a lady’s head and a lady’s dress. (I looked on the internet for another way to put this, but it is officially called a “head” and a “skirt,” so there ya go.)

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I put glue on the back of the lady A’s head and put it down where the frame is. Then, I covered lady A’s head with lady B’s skirt by gluing down lady B’s skirt on the frame as well.

I figured out how many tassels I would need by lining up tassels on one side and using measuring tape to see how many more I would need on the other sides of the board. It ended up being pretty accurate.

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unnamed-1.jpgMy dog was not a fan of this project and tried to distract me by rolling on the tassels.

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I chose white and green (green and coral! love!) antique buttons to make some interesting tacks. I used a glue gun to glue the back of the button to the tack.

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For some of them I added white yarn by taking four strands, gluing it in the space where the button was attached to the tack, wrapping it and tying it once.

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You could use any color, you could braid the yarn — the possibilities are endless. I like the way this plain white yarn looks with this green button and fabric swatch.

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I like a simple button for this picture. I sent it out with a little poem I wrote (using original A Beautiful Mess App) for my daughter. It reminds me to keep going and keep making things.

The Cucumber & A Bad Mood

unnamed-7Recently Matthew came home from work in a bad mood — which immediately put me in a bad mood. It was hot, we were tired. He wanted me to take a picture of Elro next to a cucumber he had just picked. The first cucumber of the year.

We grumbled directions at each other, me handing him a blanket to take outside, him handing me the baby and the cucumber. I felt his bad mood as if it was a reflection of how he felt about me, which made me angry.

While taking pictures of Elro and the cucumber,  I started thinking about how he created both of these beauties, and my bad mood turned into something like awe.

He is not the first guy I dated. Some people were unable to accept my disabilities. Some refused to learn about them. I have a note for people in those relationships — it’s not just annoying, it’s dangerous.

Matthew, however, is a great researcher and a great thinker. When I had my painful pregnancy he did everything he could to figure out how to treat my pain and get me through those long months. He was my biggest advocate, and if any psychological issue arises, he’ll be here for me, too.

My point is, sometimes forget about why you’re in a bad mood long enough to marvel at what love can create.

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“Blueprint for Daylight” by Christine Kalafus

::This is an excerpt, chapter 32 to be exact, of Blueprint for Daylight by Christine Kalafus. She calls it a mother’s love letter to her twins.::

Spencer and Parker are at my feet, cuddled in pale blue fleece blankets and asleep in their car seats. I address my babies in a running, silent, monologue in the hour after Greg leaves for work but before my mother arrives.

            I tell them I’m not having chemotherapy. That it will make me sick and can’t everyone see that I’m cured? The doctor took the tumor out for fuck’s sake. I have to get on with the business of mothering.

            Even without the trial of chemotherapy, I can’t hold Spencer and Parker enough, the way I want to, because to do so, means I need more arms. Or an extra pair of legs, or something else. I don’t know what. Maybe what I need is still sitting on the shelf at Babies R Us, forgotten on the gift registry, ignored by the guests at the baby shower.

            I apologize for the kind of mother they seem to have lost in the lottery. I apologize for crying when they cry, but the pain has to go somewhere and why not into the air that can hold it? I apologize for the night I was exhausted and walking downstairs with one of them in my arms, the other in Greg’s arms and as he passed me on the stairs said, “I already fed him.” I’m sorry for not knowing which one of you had already eaten and for referring, just now, to you as “one,” and “the other.” I’m sorry for not knowing which of you I held, I say.

            I ask forgiveness for when we first came home from the hospital and they cried and wouldn’t eat. How their extended crying lead me to call the pediatrician’s office at nine o’clock at night and the doctor on call prescribed chamomile tea. Which lead Greg to run out to the store, no shave, in pajama pants and his leather coat. How I had the kettle boiling when he returned, went to pour the tea and realized I never asked if the tea was for me or for the babies.

            I touch their toes, all twenty of them. Magic in two pair of baby socks. Their toenails are white and pink like translucent paper. There’s a part, a very small part, at the edge of a toenail, a fingernail, where it meets the skin. Where nothing touches the roundness but air. I kiss it. I tell them that a baby’s heel is the beginning of adulthood, a sign of strength to come, an example of something not yet needed but required to support their journey.

            I love them telepathically, by holding their skin to my skin, my hand cupping their spongy heads, all the knowledge they will ever need already inside. It is up to me to protect them. Wash them, cover their heads with hats and cradle their bodies in the crook of my arm while the fingers of my other hand play with their toes. The best I can do is have them both, side by side, on my lap. Four wrinkly legs, four flailing arms, two tongues jutting out and in while my eyes move back and forth between their faces. I memorize the differences, subtle as they are. I place my face between theirs and whisper in their ears, I will always know you. And I apologize for saying “fuck.”

 

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Christine Kalafus is an award-winning writer of non-fiction and poetry. Blueprint for Daylight, her funny and heartbreaking memoir of infidelity, cancer, colicky twins, and the flood in her basement, won the 2017 Sara Patton Stipend Award and was recently excerpted in Connecticut’s Emerging Writers, an Anthology.  “Horses,” her experimental poem of loss, won the 2017 Knightville Poetry Contest. National Book Award winner Mark Doty was the contest judge. The poem will be featured in the 2018 issue of the New Guard. Her essays have appeared in several literary magazines including Woven Tale Press’ Selected Works for, “Confessions of a Make Up Addict,” which received a mention inPublisher’s Weekly.

Christine is an instructor at Westport Writers’ Workshop. She lives in the wilds of northeast Connecticut in an old, demanding farmhouse that needs her.

www.christinekalafus.com

Why I Stopped Taking My Medication

I was 26 and had been taking medication for bipolar disorder since I was 18 when I had the brilliant idea that I didn’t need it anymore.

I decreased, with my “doctor’s” recommendation and the support of my friends in Portland, all of my meds until I was only on a low dose of one. I can’t remember what horrible thing happened first. I just know that in the next month all of things happened (in no particular order):

I walked out of my writing class to walk across the street to get a shot of vodka to try and tame my mania. I ran across a highway in the middle of the night in heels and sprained my ankle. I trashed my room while sobbing and praying. I couldn’t sleep so I kept making and eating cheese quesadillas throughout the night to try and pass out. I searched a grocery store for vodka for hours, not remembering or having the ability to remember that in Oregon you can only by alcohol at liquor stores. I wore bright red lipstick, an itty-bitty dress and talked to a stranger on his porch until the sun came up.

As odd as this sounds, it’s pretty common. Luckily, this is the only time it happened and this is why:

  1. I did not have educated support of the people I lived with and surrounded myself with. I was not living with my family, I was living with a friend in Portland. This friend is an amazing person, but she doesn’t really believe in modern medicine. She kept talking about how I needed more yoga, how I could replace my seroquel with herbs and how chanting and acupuncture could sort me out. After awhile I started wondering if she had a point – I mean, she was doing great and she was doing it all naturally with herbs! Maybe I had rushed into the whole western medicine gig.
  2. My psychiatrist was not a psychiatrist. I was on disability in Portland and the person they set me up with for my psych meds was actually a nurse practitioner. I didn’t think about this too hard. What I did start thinking about was the way he was telling me to change my diet to eat cleaner. He told me exercise and diet could treat my bipolar disorder, and I started to believe him.
  3. I was doing really well. I had new friends, I was volunteering and I got into Marge Piercy’s first Writer’s Intensive Workshop in Wellfleet. If I was doing so well, how did I KNOW that I couldn’t do even better without all the side effects of my medication?

 

I knew I had gone completely crazy when I thought that if I wrote a line of poetry down it would cause chemical warfare in the streets. I called my nurse practitioner – he recommended that I eat coconut oil for the mania. I called a friend back in my hometown. “COCONUT OIL?” He yelled. “I’m calling your dad!” Soon my family and friends back home had ordered me a taxi to take me from my apartment to the airport. They bought me a plane ticket. (I know I am very blessed to have had these resources.) They picked me up and drove me to the psychiatrist I had seen when I was first diagnosed. He did not scold me – no one did – because he knew how bad I felt. He didn’t have to tell me to never ever do this again. I had hit a rock bottom. I had needed Southern California to band together to get me out of Portland, Oregon. My ankle was sprained and my confidence was bruised. I knew I would never get off of my meds – that I would never believe myself to be “better.”

I’m “better” because I’m on them – and I always take time to listen to my friends who are taking meds, making sure that they remember that, too.

 

Let it go? Feeling Like A Burden With Chronic Illness by Natasha Lipman

::I’m happy to publish this guest post by the beautiful and talented Natasha Lipman::

A few weeks ago, I was sitting down in the shower whilst on holiday in Germany, singing along to Disney songs, when “Let It Go” from Frozen came on and I found myself bursting into tears as I sang/shrieked “I’m never going past, the past is in the past!”.

 

It was a somewhat weird sensation, and as I wrapped myself in a towel, I scolded myself for being so silly. And while I did feel very silly indeed for crying at a Disney song, it illustrated to me just how far I’ve come in how I view my relationship to myself, others, and chronic illness.

 

I’ve lived with chronic illness since I was 9, but I could hide it until my early 20’s, when it somewhat (read: massively) took over my life. It took a long time to see how it all started to chip away at my confidence, self-esteem and way I viewed myself. When every single step you take and thing you do is dictated by your health, it’s hard to separate yourself out and feel as though you have an identity outside of it.

 

I spent most of my time in bed, living in dark box, dependent on other people for company, entertainment, and support in everything from going to hospital appointments, preparing food, and even getting dressed.

 

I couldn’t keep a job, and the way I viewed ‘social time’ completely changed. Everything was obsessively planned and rationed so make the most of the few minutes a day I felt somewhat myself. But I didn’t feel like the ‘old Natasha’. New Natasha was (so I thought) boring, sad, and lonely. My confidence in my capabilities was shot, and I didn’t really know what I was when I couldn’t offer anything short of my occasional company and a whole lot of internet sarcasm.

 

All of this added up to a level of insecurity that makes me sad to think about. I felt like I was a total burden – undeserving of a job (how could I find one that worked for me, anyway?) and a relationship. After all, who would want someone that needs looking after in their twenties as much as I do that spent most of their time in bed. Not exactly the kinda person one goes looking for on Tinder, amiright? (But y’all should – we’re awesome!).

 

All of those feelings ate away at me for a long time, and I kinda come to terms with the fact that I was going to be freelancing when I could and alone for the rest of my life. So when I was offered my dream job and I found the most amazing, loving, and supporting partner – I was terrified.

 

I’d spent so many years questioning why anyone would want to be with me for anything other than friendship – it was so hard to accept that I had these wonderful things in my life. I was scared that a blip in my health (which happens pretty frequently) would be too much and it’d all come crashing down and I’d be left alone in my dark box once again.

 

So, it has been a process. I truly wish I had some kind of magical advice that would change the way those of us with chronic illness view our worth – but I don’t have any. I found that it had to come from external validation that I was deserving and enough, just the way I am. And whilst that goes against conventional ‘be kind to yourself’ Insta-wisdom – I found that until I was told this by people I loved and/or respected enough times, I just couldn’t believe them (I won’t get into the whole societal stuff around productivity=worth thing screwing with my mind – but that played a hugeeeeee role in all of this!)

 

Even now, my insecurities come into play – especially when I’m bed bound by a flare, going out is so difficult, I struggle to work, or I can’t contribute to the day-to-day ‘house’ stuff – both physically and financially. I question why I’m worth the hassle – and it sucks to feel so down on myself for something I have no control over.

 

But that’s exactly the point. I do everything I can to be in the best shape my health will let me be in – and no matter what, I know that it’s not my fault. And I have a personality, skills, and talents which are, of course, impacts by my health, but not complete overruled by it.

 

Spending time both on social media and off of it has completely changed my perspective. Online, reading and communicating with people who are managing to find ways to work and live and love that work for them and their bodies has made me realise that there are people out there who see beyond health – even if we can’t always. And offline, realising that I have so much to offer – even if it’s not the way I thought I’d be living my life has been completely game-changing.

 

One of the most important things I’ve learned is that everything about me isn’t ‘in spite of’ my illnesses. I live with my illnesses and they are part of me. I can’t ignore that – they’ve shaped me more than anything else in my life has. And that’s ok. Because I rock it.

 

There are always going to be people who don’t get it. I choose not to spend my time with them.

 

It’s only when I take a minute to reflect on everything I’ve achieved (and for chronic illness those achievements can range from the big work stuff to the tiny ‘got out of bed and brushed my teeth), I realise that I am truly happy for the first time in my life.

 

I never know how I’m going to feel from one day to the next, but I’m hoping that I have let go some of that insecurity, and realised my self-worth is based on more than my output. I work so hard every day and try to be there for the people in my life that I love (and people on the internet who ask for my help) and generally consider myself a good person with a lot to offer. So why don’t I deserve the same in return?

 

Turns out, I do.

 

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Natasha Lipman is a chronic illness blogger from London. She is a journalist focussing on disability and women’s health at BBC Stories. You can find her on Instagram and Twitter @natashalipman and on her blog at www.natashalipman.com