If you want to know the roots, it’s pretty simple. I was born a crazy, obsessive horse lover. Zebras were like the exotic, adventurous versions of horses. My feral, child self adored them.

Things compounded when, at age seven, I was bitten by a zebra.

No really, I have photographic proof.

I was in Texas. Y’know, where these kinds of things can happen. My family and I were in a wildlife drive-thru, I fed the zebras out of my hand, delightedly and bountifully. I ran out of food, my shirt was the same color as the food bag, and, well…the pictures explain the rest.

It’s been a family story that I’ve delightedly told at every ice-breaker meet-and-greet for most of my life. As such, a lot of gifts I receive are decidedly zebra themed, such as my favorite sweater I wore to my fangirl-dream-come-true at Hamilton.

So the zebra was always a fun, somewhat quirky symbol of myself.

I got my diagnosis of Ehlers Danlos Syndrome (a genetic disease I’ve unknowingly had all my life) around January of this year, only to discover that the symbol of the EDS community is no other than…the zebra!

Not only is the zebra a symbol for EDS, it is a well used, well loved symbol. EDS awareness banners, bracelets, memes, etc are always covered in zebra stripes. EDSers refer to themselves as “zebras” or “one of the herd.” It’s actually a lot of fun and a very cool symbol to have for your illness!

It now seems that my early-age zebra bite was prophetic. Or a heavy handed use of foreshadowing. Or the zebra infected me with its vampiric bite in an effort to turn me into one of its own.

I could go all days with these.

But jokes aside, finding out that the zebra was the symbol of my permanent, disabling illness, was not only deeply ironic, it was a little upsetting to me. Zebras were a bizarre, fun, personal flag of mine. Now it felt like it had been co-opted by something I felt very ambivalent about. Yes, having an official diagnosis was incredible, and having an explanation to my weird, life-long body issues was a tremendous relief (you mean my ankles didn’t just give out and make me fall because I’m unbelievably clumsy? And my unexplained back pain wasn’t all in my head?), but it’s still the thing that causes me to feel sick and debilitated every day of my life. I didn’t want the symbol of that to be my beloved zebras.

Here’s the thing, though. EDS isn’t new to my body, just my knowledge of it is. I have always had this disease, just like I have always loved zebras. Whether I knew it or not, I have always been an EDSer, and I have successfully (to varying degrees) lived with it my entire life.

As much as we like to say “I am more than my illness,” and “my illness doesn’t define me,” to some extent, my illness does define me. Yes, I am more than just my illness. I am also nerdy, and goofy, and I love animals, and I have a random obsession with English Tudor History. But I am also defined by my illness. My current lifestyle, my likes, my daily habits, my values, my relationships…those have all been determined, by some measure, by my illness. And, I guess, to some extent, it always has been. I have always had a lot of determination and resilience, and I think that is partly because I’ve lived my entire life in a body that was always somewhat dysfunctional. I learned at a young age how to work hard at a thing that didn’t come as easily to me as it did to other people, even if that thing was as simple as “walking.” There were certain things growing up that I didn’t pursue or enjoy because my body didn’t allow me, and that has become exponentially more true in the past four years, since my illness has become more acute. A lot of things about me have changed in that time period that I don’t like, for instance my self-confidence and self-competence, but some things have changed for the better. I know I am a more patient, more empathetic, and more appreciative person than I was before becoming acutely ill. So for better or for worse, every part of me has become informed by being chronically ill. That doesn’t make me any less “me,” it just make my illness one of the many things that completes the “me” package — but it’s a very hefty part of that package.

So the zebra is still a symbol of me, and the fact that it also symbolizes Ehlers Danlos Syndrome just makes it even more “me.” Sure, that makes the symbol more complicated than I had realized as a kid, but life is more complicated than I realized as a kid. And now I get to share this symbol with a lot of kickass EDS warriors who share and understand my struggles. Besides, even if we are all part of the same zebra herd, we still have our individual stripe patterns that keep us our own unique persons.

I am an EDS zebra. I always have been and I always will be, even if a cure was discovered tomorrow. I still love my (literal) zebras as much as I still love my old self…I just understand them both a lot better now. And that remains something to celebrate.

About the Author:

Leah is a 25 year old suburb-of-Philly native. She has Ehlers Danlos Syndrome – Hypermobility Type, Gastroparesis, Dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of.

The post On Zebra Stripes and Disabled Identity appeared first on Spoon Shares.

Okay, I’m not a poet, and I certainly know it. So here’s a picture of my adorable dogs to make up for it.

But there is a point to my sappy spoonie story-time, and that is a message I want everyone with chronic illness to realize, that I have slowly realized in my past four years with chronic illness.

Yes, it is heartbreaking, frustrating, painful, and sometimes terrifying to have a chronic illness.  The every day things healthy people find so simple are often insurmountable obstacles for us. We mourn our old selves, our old lives, and the goals and life paths we wanted for ourselves that we can no longer achieve. This is, needless to say, not the life we envisioned for ourselves.

But that doesn’t mean we can’t have a wonderful life.

I didn’t get to graduate college, I can’t work, I can’t do more than a few hours of real activity without needing to lay in bed recovering and miserable for several days afterwards.

But I can text with my friends and family. I can knit and crochet and give gifts to people that makes them smile. I can watch National Lampoon’s Christmas Vacation with my family and laugh until the room spins. I can play board games with friends and giggle about how my short term memory is shot from the extra activity, and not remember what the hell was on my playing card that I checked a minute before. I can lay down and watch Doctor Who with a dog in my lap and then discuss it to death online with my friends.  I can sing songs (badly) about poop with one of my best friends, and laugh about our dysfunctional bodies.

Yes, it can be sad that that is all I can do, and we live in a world where we feel pressured to do more and achieve everything that is humanly possible. But when all that is humanly possible is making a sweater for my mom, that may not be such a bad thing. My life is not what I thought it would be. It is not what I wanted it to be. But it can still be a good life. I can still take joy in the people who support and love me, and the small, seemingly inane things that I am able to enjoy doing each day.

My body may be crap, and it might always be crap, but my life can be good. Really good. If I accept the limitations and the realities of the life my body has created for me. It’s a smaller life, and it’s not good every day or every minute. But no life is. I spent a long time relying on the idea that one day this “sick-chick-life” would end and I’d start my real life.

But this is my real life. And maybe one day I will magically recover and everything will be different, and I can have the life I envisioned. And don’t get me wrong, I’ll never stop hoping and fighting for that.

But if it doesn’t, I know I’ll be okay. And you will, too. Because once you let go of the idea of what your life is supposed to be and start embracing what it is at this moment, you can start to enjoy it.

And then you can have a truly wonderful life.

About the Author:

Leah is a 24 year old suburb-of-Philly native. She has Ehlers Danlos Syndrome – Hypermobility Type, Gastroparesis, Dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of.

The post A Message to All Spoonies: You Can Still Have A Wonderful Life appeared first on Spoon Shares.

Hey everyone. So, last February was the end of a very long winter for me. And facing similar struggles was my good friend Catherine Richardson. Catherine and I talk pretty much everyday, because, well, she’s an awesome sauce spoonie and always fun to talk to. We make jokes about our confusing bodies and share our constant poop struggles (true friendship, guys). We’ve never been in the same room, or even the same country, but when you can casually ask somebody, “How’s the poop coming?” that starts to become a lot less important.

I’m spending a lot of this post talking about poop, which actually has nothing to do with what I actually want to talk about. I could blame the brain fog here, but I think we all know by now I’m just a senile old woman stuck in a 25 year old body.

So one frustrated night, when I wasn’t able to get out of bed and Catherine wasn’t able to get any of the doctors appointments she desperately needed, we were honest. More honest than I’m usually willing to be with myself, much less the faceless internet or, even scarier, my loved ones. We had a conversation about the dark struggles of having a chronic illness, and what it feels like to have our pain so often dismissed because “we’re not dying.” Don’t get me wrong, terminal disease is a whole other bag of stress and pain that I am lucky to not have to deal with. But that phrase is so often used to dismiss the struggle and pain experienced by people who feel sick almost every day of their life. So we wrote a poem to put words to the struggle that hides underneath the mask of “not looking sick.” It didn’t go viral or anything, but we had a lot of feedback about the chord it struck with those who did read it. So we felt it was a story that should be told. And who better to tell it than the people who write about it regularly? So we gathered some of our chronic illness blogger buddies, and we made this video. To read a much more articulate summary of my feelings about this video, read Catherine’s post here.

We don’t look sick. But we are. Which means that the only way to understand us is to listen to us speak. So that’s what we’ve done. I encourage other people with chronic illness, or their loved ones, to share their stories as well in the comments of this post or the video! Or, better yet, write a post.

A heartfelt thanks to all the bloggers who contributed. This is no small task for someone who has to deal with sickness on top of normal life, so I’m just thrilled and grateful for everyone’s enthusiastic and willing hard work on this project. Below the video are the links and bios of all the fabulous people who made this project possible.

This is our #invisiblefight.

In order of appearance:
Catherine Richardson – Born and raised near Vancouver, Canada, Catherine is in her mid 20’s blogging and crocheting her way through all the unknowns of being a medical zebra and finding lots of opportunities to give her sense of humour some exercise along the way.
Blog, Facebook

Leah Holstein – A suburb-of-Philly native, Leah is a 25 year old tubie with gastroparesis and dysautonomia. She likes horses, Disney, and anything snarky.
Website, Twitter

Katie Brook – Living in Yorkshire, Northern England, Katie uses her love of writing to raise awareness about Myalgic Encephalopathy (ME/CFS) with the hopes of helping fellow sufferers feel a little less lonely along the way.
Blog, Twitter

Amanda Bryant – From Virginia Beach, Virginia, at 25 years old Amanda suffers from a severe form of the invisible illness gastroparesis. In spite of things that try to knock her down the daily, she is a newly-wed with an amazing 8-year-old stepdaughter. Her and her husband also own a business that does custom reclaimed pallet and barn wood furniture.
Instagram, Fundraising Page

Sarah Frison – Sarah is an integrative nutrition health coach from Belgium. As a result of living with gastroparesis, dysautonomia and gluten intolerance, she now uses her health coach and pastry chef training to share recipes, tips and tricks to help others live as well as possible despite their own dietary restrictions.
Nutrition Consulting Website, Twitter

Sarah Rush – From Vancouver, Canada, 21 year old Sarah lives with Ehlers-Danlos Syndrome and many other complications and conditions that come along with it. She is a psychology student who loves music, photography and any opportunity to raise awareness.
Facebook

Samantha Brink -I’m a book worm trying to make my mark in the non-profit world. Humor helps me battle back my anxiety and cope with a mish-mashed disorder, which I’ve come to understand as “slightly broken but I’ll never surrender.” Blogging allows me to unleash my quirky side and share some of the madness from balancing my medical needs with my career, grad work, and family.
Blog, Twitter

Stephanie Torres – While Kansas will always be home, Stephanie has lived in Washington State for the last 14 years with her husband and 2 fur babies (aka her “angels”). Diagnosed with gastroparesis and dysmotility in 2008, she had no idea how much her life would change. By 2011 she required a feeding tube and in 2013 had no choice but to start IV nutrition. Her dreams may need to be altered but she continues to look for the silver lining, hosting awareness events, working as an advocate for others on nutrition support, and making fun and laughter a priority.
Blog, Facebook

Lisa Tschetter – Living just outside of Vancouver, Canada, Lisa lives with POTS and gastroparesis. She has taken everything she has learned about coping with POTS and created a website to help others living with the same condition get a handle on their own symptoms. She loves playing the piano and has recently become hooked on crochet.
Blog

Chanel White – From Seattle, Washington, Chanel is living with a terminal diagnosis of systemic scleroderma and a whole host of other complications. However, despite the fact that she is dependent on a feeding tube, a central line and supplemental oxygen, Chanel focuses on living as fully as possible and acts as a voice for others with scleroderma and invisible illness through her writing and speaking engagements.
Blog, Instagram

Michaela Shelley – Michaela is your not so typical high school senior living in South Carolina. She is fighting Mitochondrial Disease, Dysautonomia(POTS), and Gastroparesis. Living with multiple chronic illnesses has changed her life dramatically but it’s made her see a different view in the world and for that she is very thankful.
Blog

The post Our Visible Fight For Invisible Awareness appeared first on Spoon Shares.

…It’s three in the afternoon and you feel like you’ve been running around like crazy all day but when you look back on the day you realize you’ve actually done nothing.

…You’ve been on hold for 30 minutes and you really don’t want to lose your place in queue, but you’ve got three days of laxatives and a week worth of crap ready to come out…now…so you sigh and hang up.

…you have medical supplies stashed all over your house and it’s not at all unusual to look for your shoes and your extra cases of formula in the same place.

…your friends and family regularly list their symptoms for you assuming that you will just know what’s wrong with them.

…talking about your bodily functions is part of your everyday conversation.

…you walk into the pharmacy and they greet you by name.

…you can’t carry around a regular size purse anymore because of all the medical supplies you cart with you so you walk around with a Mary Poppins sized tote instead.

…you can’t watch medical shows without pointing out all the things that are unrealistic, and all the facts that are blatantly wrong.

…you look through your phone log and realize that phone calls to and from doctor’s offices far outnumber those to your friends.

…you self-diagnose yourself and then wait weeks, months or even years for a doctor to confirm said diagnosis.

…you’ve probably on more than one occasion seriously deliberated about how long you can get away with not showering.

Add your own in the comments!

About the Author:

Catherine is a 23 year old spoonie living just outside of Vancouver, Canada. She has gastroparesis, a feeding tube and is currently TPN dependent. She spends most of her time crocheting like the old soul that she is and blogs at Finding my Miracle.

Gifs cheekily supplied by Leah.

The post 11 Signs You’re a Spoonie appeared first on Spoon Shares.

It wasn’t on purpose, mind you. Not like we all smoked a big bag of dope before the ceremony.

Although tequila shots were had by some. Not me — I can’t drink alcohol. 

But I was on a pill called tramadol for the first time and it had an…inconvenient effect on me.

You see, a week before said wedding I started having severe spasms of pain in my right side, presumably caused by my gastric pacemaker. It happens every so often, and usually my acupuncturist makes it go away. But, because the GP Gods had an extra special sense of humor that week, my acupuncturist happened to be out of town.

So I frantically called my doctor saying, “I have to be able to stand upright, in heels, and have a radiant ‘so happy for you smile’ plastered on my face all day for the pictures HELP!!!”

He prescribes a pain pill called tramadol, and says I can take one pill every four to six hours. If that doesn’t do the trick, I can take two — but be careful, because it can have a mildly narcotic effect.

You see where this is going.

So the day before the wedding I take two pills just to make sure nothing bad would happen, and I was a little fuzzy, but the pain was much more bearable.

So I wake up the day of the wedding in a house where I’m staying with the bride and the other bridesmaids, and decide…f%#$ it. I want to have fun dancing and not worry about the pain. So I take two again.

Funny thing, though, about my illness. I have gastroparesis, which means that I digest things differently on any given day. I also hadn’t eaten anything in about two days because it made the pain worse, and I was trying my best to be a helpful bridesmaid instead of a burden. Meaning I was taking these pills on a completely empty stomach.

So about an hour after I take the two pills, I’m searching for my Bengay patch and can’t find it. Then I realize that I’ve been staring at the same patch on the carpet for about five minutes. And I think….well, that’s not good. And I suddenly feel like there is a veil between me and the rest of the world that I can’t reach through to focus on any given thing.

My mom calls me. She’s driving to the ceremony but needs directions. “Uh, you just go— the beach is like, it’s Lot 34 I think? and the one road…”

“Leah, what is wrong with you?”

“I’m not, it’s the one road — I’m high Mommy, I’m so high.”

Laughter screeches out of the other end of the phone. “Took two, did we?”

“…how do I make it stop!?”

“You just gotta ride it out, sweetie,” she says.

So I walk up to one of my best friends, who was the maid of honor, and say “Kayla. I’m just letting you know…I’m really high right now.”

Now, Kayla just graduated nursing school and I had told her that I was taking these pills. This still didn’t stop her from looking at me incredulously and saying, “Why would you smoke right now?”

“No, Kayla, the pills!”

“Ohhhh…oh! Oh.”

“Yeah just…make sure I don’t do anything stupid.”

Flash forward to the bride getting ready. An absurd amount of people were gathered in one room watching the bride and the bridesmaids get ready. A professional photographer was documenting the whole process. Another friend who was doing the bride’s makeup was delegating me with instructions on how to cover her back psoriasis. This was a three step process which was well beyond my powers of comprehension at this point.

“Katie,” I said, “I really can’t handle a job right now.”

Katie stares at me quizzically and I immediately feel the shame of being an incompetent bridesmaid. “I-I can do it. Totally. Just give me the makeup.”

“Girls, you should really get your dresses on!” 

So we all gather in the side room where the door is slightly ajar (due to the curling iron snaking through the door into the nearby outlet). I grab my dress, pull it on, zip it up….and it falls right down to my waist.

Holy crap monkeys. After not eating for two days I must have dropped like twenty pounds and my doctor is gonna kill me and put me on a feeding tube and my dress won’t stay up and I’ll have to wear a trash bag in the photos but maybe I can use duct tape do we have any duct tape?!

It’s also important to note that, of the entire bridal party, I am the only one without a bonafide, medically-diagnosed anxiety condition. And I was the one having a full on panic attack.

Whoops.

One of the other bridesmaids touches my shoulder. “Leah, you’re wearing my dress.”

Oh. Ok. We’re good then.

At this point the mother of the groom bursts in to give us a time update, then leaves without shutting the door. The other bridesmaids shout for her to come back and close it, but I just roll my eyes and go “I’ll do it.”

My friends would later tell me that they all held their arms out and made a noise, similar to when you see a car crash about to happen.

Because I had completely forgotten that my friend’s strapless dress was still hanging around my waist, leaving me completely topless.

Once again, I must remind you there was a professional photographer in the other room. As I closed the door, I saw lights flashing. So I’m fairly certain that somewhere there is a professional photograph with my bare breasts photobombing in the background. Photoboobed. 

I get the right dress on and help the bride put hers on. Now it’s time for the three step psoriasis-covering back makeup. But somehow I only have one makeup container in my hand now…guess that will have to do. I try to open it and I try to open it again and it won’t open what is happening?!

My friend turns the makeup container around. I was trying to open the hinge. After I still can’t manage to open the container, despite it now facing the correct way, she takes it from me and finishes the job herself.

The bride is dressed and lovely, and we were all emotional — whether it was the drugs or if I was just happy for my friend? The world may never know.

But suddenly I remembered. My escort down the aisle is the groom’s autistic brother. Didn’t worry me a bit when it was assigned, but now that I can’t even manage to open a makeup container correctly, I’m suddenly panicking that I’ll do something that will trigger him, like grab his arm too tightly, and his senses will overload, and he’ll have a fit in the middle of the wedding, and it will be all my fault.

Once again, helpful bridesmaid having a panic attack. But it turns out I needn’t have worried — my escort was drugged too. We made quite the pair.

Luckily the actual ceremony was outside and on the beach — so I didn’t have to navigate walking in heels down the aisle while stoned off my ass — and the ceremony went smoothly and beautifully. I felt exuberantly thrilled with my success. Many hugs were had and lovely (fully clothed) photographs were taken.

“I made it!” I thought. “I’m in the clear! Except for a few friends and a professional photographer or two, I didn’t horribly embarrass myself in front of an entire wedding party.”

That is, until the reception.

The DJ announced everyone in the bridal party as pairs, and we decided we’d all do cute poses when we entered. Not wanting to make it too difficult for my escort, we decided I’d do a cute little curtsy to him, and have him bow to me. We taught him how, and decided that if he didn’t actually do it when we were called, then it’d still look cute with me curtsying to him.

At this point I’ve mistakenly come to the conclusion that I have completely sobered up and will have no problems whatosever. I also forget that I now have rather high heels on.

Once again, you see where this is going.

They announce our names, the groom’s brother and I walk out, I go to curtsy…and fall all over myself. I don’t do a full face plant. I think that would have been far more graceful. My foot slides back, loses traction, and I wildly wobble about, futilely attempting to resist gravity’s diabolic pull. Limbs fly all over the place. My face contorts into bizarre shapes I thought only possible on a Pixel Paint program.  I finally land on my feet and place my arms awkwardly on my waist in a cartoonish “I meant to do that” sort of matter.

Next to me, the groom’s brother bows perfectly.

I shake my head at myself. Haven’t I learned? Never underestimate a fellow spoonie.

And, in the case of a wedding, maybe stick with the lower dose next time.

About the Author:

Leah is a 24 years old suburb-of-Philly native. She has gastroparesis, dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.   

The post Boobbombs and Faceplants: My Adventures with Tramadol at my Friend’s Wedding appeared first on Spoon Shares.