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When I Started Calling Myself Disabled

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I had just turned 21 when I started calling myself disabled.

It wasn’t that the word hadn’t described me for years. I’d been living with chronic pain and other symptoms caused by Ehlers-Danlos syndrome and other fun co-morbidities all my life. When my friends were joining soccer teams and playing girls’ softball, I was tearing up as I walked from one end of the playground to the other. When we were memorizing our times tables, I learned how to hide two things: 1) I’m very, very bad at math; 2) I was in so much pain that sometimes it hurt to breathe.

My symptoms got worse as I hit high school, and so did my avoidance of the word “disabled.” It might as well have been a bad word — the kids in special education classes were “special” or “differently abled;” my brother was just “autistic;” Lance Armstrong was “inspirational.” At worst, I had “health problems.” I believed a disability would mean that I couldn’t. I was an AP student, a dedicated actress, and a daily babysitter, and I believed if I started calling myself disabled, it would take those things away from me. I couldn’t do what I had always done.

But if you’re reading this, you know as well as I do now that that’s not true. I was disabled. I just didn’t know it was my word. I didn’t know it was my community. When I embraced my identity, my diagnoses, myself, I grew into the adult I had always wanted to be.

My identity taught me that I could.

I could become a leader. I could fight for accessibility. I could support my community. I could become an activist. I’m disabled, and it is my identity and my community that give me my strength.

I could, I can, and I do.

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Thinkstock image by BerSonnE.

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Just Because I Had 'a Good Day' Doesn't Mean My EDS Is Cured

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It was just a good day. No, I’m not healing or getting better or being cured or whatever. I walked for a day. By that I mean I used my rollator instead of the wheelchair to go to the bathroom and crawl back into bed. I sat on the rollator a lot during these little jaunts.

Ehlers-Danlos syndrome is genetic. It’s a part of us. Just like having blue eyes is a part of you. Some people have it and can do all kinds of stuff and have minimal damage (like how I used to be), and some people are like me and my sons (J was affected his whole life, T was about 12). Our EDS affects our whole bodies. Collagen is in every part of the body, skin, joints, organs, vessels, muscles… EDS decides which part(s) will be affected.

 

For my sons and me, it affects our veins, making them stretchy and causing severe blood pooling which is called postural orthostatic tachycardia syndrome (POTS). We get dizzy spells, nauseous, blurry vision, blue fingers (Raynauds phenomenon and/or poor circulation), lightheaded and I faint on a regular basis and the boys “black out,” which means they can’t see for a time. EDS affects our joints where we dislocate, hyperextend or are “double-jointed,” and since muscles are affected, no amount of exercise “cures” it.

My son biked 10k daily, I biked 10k and ran 5k daily – we were both solid muscle. We still dislocated and blacked out. He was hit by a car biking because he blacked out. I have almost been in car accidents because I would black out. My youngest and I have scoliosis with it. I have mast cell activation disorder with it. My eldest and I have chronic myofascial pain syndrome (CMPS) with it. My sons have digestive issues with it (borderline gastroparesis). It’s not one thing. It’s a multi-system disorder.

It’s not going away, people. I’m not being hopeless or martyr-like. I’m being realistic. It is what it is. My eldest and I have workers that help us wash but I take a little walk around my house and you want to know if I can travel or take visitors or this or that. I appreciate your love and wanting to see us, but I’m here to burst your bubble – it isn’t going to happen. We are blessed on few days when we can do a few things, so I posted. There are good days and bad days, but there are no “I’m cured” days. It was just a good day.

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Thinkstock photo via paperteacup.

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What Happened After My Illness Was Featured on 'American Ninja Warrior'

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In 2015, Michael Stanger of Utah was a contestant on “American Ninja Warrior.” His story was compelling as he was competing for his wife, Enedina, who has Ehlers-Danlos syndrome. At the time of airing, Enedina was using a wheelchair due to EDS.

In July of 2017, Michael went back on “American Ninja Warrior” and his wife Enedina was out of her chair and doing great. She credits diet and exercise for her two-year change in status.

This is amazing. Don’t get me wrong, I’m ecstatic for Enedina, but as someone with EDS, I have to address some of the results of this episode.

 

I should preface all of this by saying that I love that the words “Ehlers-Danlos” are being said on TV! I love that more people are becoming aware and learning about this condition as it’s been so far from the forefront for so long. TV shows like this one and a recent episode of “Grey’s Anatomy” are a huge leap for those of us who have EDS and have to spell the condition several times to doctors and medical professionals who should have heard of it by now.

I should also note that it’s never made clear what type of EDS Enedina has. I have hypermobility type, which causes chronic dislocations among other issues. I dislocate between seven and 30 times a week. The small ones I can handle (toes, thumbs, etc.) but the big ones (like my knees and hips) take more out of me.

Since the airing of the show last week I’ve been beyond lucky to have friends and family reach out and ask if I saw the episode. The first thing they always say is “Hey, I saw someone on TV with what you have!” I love, love, love the enthusiasm when they realize they recognize my disorder.

But because of her transformation, the next part is hard. “Did you see she’s better?” Well yes, but no. “Did you see it’s because of diet and exercise?” “Did you notice her husband does (this product) and she’s on (this regimen) that I happen to sell?” “Can I help you get better too?” Ugh, thanks but no thanks. Here’s why. Let’s address this.

First, it’s important to note that there are several different types of EDS. Our mascot is the zebra. No two zebras have the same stripes. Each one is different. The same is true for EDS patients. No two are alike. Yes, we share a common thread in that our collagen is defective, but we aren’t the same. I dislocate but I have EDS friends who have heart issues, skin issues, etc. No two are alike. We are each unique. This is part of the reason it’s so hard to diagnose and treat us.

Second, she’s not cured. This is also really important. She has a much better quality of life, I’m sure, but she’s not cured. She’s found something that works to mitigate her issues, but she’s not fixed. Diet isn’t going to fix my DNA. Exercise isn’t going to fix my broken collagen. There are
lots of EDS patients who find that going gluten-free or dairy-free is helpful for them. For me, I cut way back on my sugar intake. That helps me. Exercise is tricky. For some, exercise is necessary, for others it’s impossible. I was doing physical therapy for a while and it helped, but then I dislocated and damaged my already injured knee. No physical therapist will touch me and help with anything until it’s fixed. I’ve had three surgeries on this knee already so I’m at a standstill. We are hoping another surgery will help or fix the issue but for now I’m back to almost zero exercise. And yes, I feel a difference when I don’t exercise, but it isn’t for a lack of wanting – I physically can’t right now and that’s OK.

Lastly, I heard her husband does a popular exercise/nutritional program. That’s awesome, for them. I appreciate that my friends who do the same saw this and think it might help me. I absolutely love that you think of me. But that’s not for me. I have a team of doctors helping me. I have supplements based on my needs. When and if my team feels something like this would help me, I promise I’ll reach out. I know what you do and I respect the heck out of you but please know right now that isn’t going to fix my DNA and I am doing OK with where I’m at. So thank you, but it’s not helpful.

I wish all the best to Michael and Enedina and am beyond grateful to yet another network for portraying someone with my illness. And again, I appreciate how much I must mean to you when you email, text, mention or message that you saw this and thought of me. I love the awareness! But please know, I’m not her. I’m glad this worked for her but you don’t know her whole story any more than you know mine, so please stop the message after you say “I saw EDS on TV.”

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My Collagen Is Faulty – Not Me

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My collagen is faulty. It isn’t as strong as it should be. It doesn’t do its job properly and it causes me pain.

But that doesn’t make me faulty.

You see, my collagen is a part of me, sure, but it isn’t everything. I am a daughter, a sister, a cousin, a niece, a friend, a best friend, and most importantly, I am human.

I am different, but who isn’t? We are all individual and we are all flawed. It just so happens to be that my major difference is that my connective tissue is not as strong as most peoples.

So yes, I have fragile skin constantly injure myself. Yes, I am often fatigued and in large amounts of pain. Yes, I have postural orthostatic tachycardia syndrome and dysautonomia, and an array of other conditions.

But no, that does not mean you have to protect me or “wrap me in bubble wrap.” I’m doing the best that I can do with it all and although I know it comes from a nice place, I really don’t need your pity or sympathy.

I beg you, instead, to just treat me as you would anyone else for most of the time. I won’t deny I will probably need your assistance more than others, but I will ask for it when I need it. If you begin to do everything for me, it makes me feel less, like I am broken and incapable of doing things for myself. So, please, unless I need it to be otherwise, I ask you to see me as any other friend or family member.

There will be days where I cannot be “normal” because my pain levels have skyrocketed, but just think of these days as any day you are feeling a bit under the weather. Usually, my pain is because I overdid it the day before and perhaps my joints couldn’t take it, just as you would be tired and sore if you overdid it by say, running a marathon. It’s just that it takes me less to feel this way. But as you would, I will manage to look after myself and I will get back up.

Because I am not broken.

Like you, I have dreams and goals. Maybe I have to set myself a different standard, but I dare anyone  to try to find someone who has the identical dreams as they do. We all have different capabilities, that’s what makes us who we are.

Perhaps I have to cancel plans on you, but so does everyone at some point.

Maybe I go to bed earlier and drink less than you do when we go out, but everyone, no matter who they are, has different limitations.

I have passions and hobbies. Some of which I may have in common with many people, others which are unique to me. As does everyone else.

I am, essentially, just like everyone else.

Obviously, my life has had to be adjusted to accommodate my Ehlers-Danlos syndrome, that’s no secret. But that doesn’t make me less in any way. It makes me me; it’s who I am. This syndrome is part of me and I am just learning new ways to handle it in the same way you would when you are given an obstacle to overcome.

This does not make me any stronger than anyone else or an inspiration for putting up with it. It’s my life and I’m just living it, like you all live your lives.

So the next time you go to think of me as different, remember everyone is different.

And just because my collagen is “faulty,” that doesn’t mean that I am too.

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Thinkstock Image By: deniskomarov

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How Living With Chronic Pain Taught Me to Love My Body

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My body is more than my pain. My body is more than my pain. My body is more than my pain.

This is what I repeat to myself when my Ehlers-Danlos syndrome (EDS) symptoms are flaring up and I am stuck in bed with ice all over my body, trying to numb the debilitating muscle spasms and headaches. Sometimes I am able to believe myself when I say it. Sometimes it goes in one ear and right out the other. But to me, it’s a necessary reminder, especially on my worst days.

Before chronic pain invaded my life and my body, I was incredibly active. In high school, I played volleyball, and while in college I started working out regularly with a personal trainer. After graduating, yoga became my drug of choice. I spent at least four days in the studio, sweating and breathing and getting in tune with my body.

For someone with a history of self-hatred and body dysmorphia, practicing yoga was an intense form of healing, both internally and externally. Not only was I in-shape and feeling healthy, but I was also able to accept the things about my body that I could not change.

Within a very short period of time, I lost that sense of peace and acceptance when my neck and shoulders unexpectedly gave out on me for no apparent reason. Migraines and muscle knots were becoming a monthly, then a weekly, then almost a daily occurrence. Soon after, I developed an intense aversion to heat followed by chronic fatigue. In a matter of months, I lost my yoga therapy and the confidence that came along with it. I was no longer the person I worked so hard to become.

Three years and countless appointments and blood tests later, I was finally diagnosed with hypermobile EDS, which is a chronic connective tissue disorder caused by faulty collagen production. Up until that diagnosis, I had been struggling to come to terms with my new normal. In many ways, I still am. One thing I have had to work on again is my relationship with my body.

It’s easy as a person with chronic pain to view your body as the enemy. You feel it constantly failing you every day, making it impossible to do things you used to do so easily – make your bed, take out the trash, clean your dishes, transition into Downward Dog. The lack of mobility can lead to viewing your body in a not-so-positive light. And when you are prone to self-abuse in relation to your flesh and bones anyway, it’s 10 times harder to treat your body with respect.

When it became obvious that my pain was going to be a permanent part of my life, I had a few choices to make. I could ignore it, which I did temporarily through irresponsible and reckless behavior. I could crumble and complain and see my existence as being doomed, which I also did and sometimes still even do from time to time. Or I could find a way to accept my condition as best as I could, as well as find a way to honor my body and appreciate it for what it is – mine.

I have been getting tattoos since the age of 18, and I’ve always loved the idea of embedding a part of my life or personality into my skin forever. However, since I’ve been struggling with chronic pain and since I’ve realized I need to make friends with my body, getting inked has taken on a whole other meaning.

I now see the art as a way to decorate my body and create a masterpiece out of it to remind myself that my body is more than my pain – it’s a canvas, and I can make it anything I want. I also dye my hair every shade of the color wheel as a way to experience vibrancy, and I experiment with makeup on a regular basis. These small changes and acts also gave way to something I never thought I would ever be involved with – boudoir modeling.

As a former photographer and as a lover of vintage styles, I was always attracted to pinup and boudoir art. I never delved into it personally due to my body image issues, but as my pain escalated and as my acceptance of it came to light, I decided to embark on this journey to not only challenge myself, but also to truly see my body as beautiful and worthy and strong again.

Through this voyage, I’ve been able to look at my stretch marks and love them because they show growth. I can look at my thighs and love them because they keep me standing strong (on most days). I can look at my scars and love them because they reveal healing.

Sure, there are plenty of aspects about my body that cause me both emotional and physical pain, but there are many, many more that keep me alive and make me who I am.

I was able to honor my body through my yoga practice years ago, and I’ve only recently been able to understand that I can still do that just via a different avenue. I can move my body in gentle and subtle yet powerful ways when I enter my pinup model character. I can treat my body to ornamentation and show it what it is capable of enduring and becoming when I sit down in a tattoo chair. I can now forgive my body on my toughest days and revere it on my best.

Because I now know that my body is more than my pain – so much more.

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Thinkstock Image By: dudyka

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How Ehlers-Danlos Syndrome Affected My Day

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“How are you doing?” amongst other questions are very difficult to answer. The usual answer you will get from me is, “I’m OK, thanks.” This doesn’t even come close to how I am but is the quickest and easiest answer I have.

Living with pain and fatigue everyday is so difficult for people to comprehend. I do have some close friends and family that understand, but they will never 100 percent know because they are not me. You are the only person who truly knows how you are feeling.

I will try and describe how I am today.

I woke up quite late (10 a.m.) due to an exceptionally bad night. It was after 3 a.m. before I actually fell asleep. This was because my restless legs syndrome kicked off as I am just about to fall asleep. My legs usually start off by feeling like a dead weight, numb and I feel like I cannot move them. Then the pain I can only describe as prickling needles all over them. This is so frustrating as you cannot just switch off from how they are feeling. I get up, stretch, walk around, get medications and heat packs if needed and try again. Then the cycle will happen again.

My shoulders hurt all the damn time! They are so prone to subluxation. For a healthy person, if this happens, medical attention maybe required to place the joint back in. Due to my Ehlers-Danlos syndrome, this is a daily occurrence and happens all day long. The actual subluxation isn’t always painful as it happens so frequently, but the pain is always there though. For me, the joint will go back in on its own. I have to hold myself in a certain way so my muscles hold the joint in place which is exhausting, as I cannot fully relax, otherwise they will just slip out of joint. This causes micro and macro traumas, and this is why it’s so painful all the time.

Waking up, I spend sometime in bed just working out what hurts and what kind of day today will bring. My main issue is if I haven’t paced well enough or done too much the day before, everything hurts. I have to work out if I need painkillers just to get out of bed and today was one of those days. My most painful points today are knees, hips, back, neck, shoulders and to top it off a headache. You gotta laugh otherwise you will never get out of bed and get on with life. Despite the pain, I look “normal” walking my dog, chatting to people whilst all the time I am in pain.

Because of all the pain and the fact my muscles work extra hard to hold my joints in place, this causes major fatigue. Now unfortunately, this isn’t a case of just feeling “tired” all the time or being “lazy.” For me, my fatigue causes me to feel like I have constant flu symptoms. This can also be anything from aching muscles as well as joints, tightness of the muscles, dizziness, or feeling sick. I also really struggle to remember things and really struggle to concentrate. Heart palpitations are quite common too. I sometimes sound a little slurry or can’t remember a simple word and get frustrated with myself – this is called brain fog.

Today, I am pacing whilst cleaning my home. I have cupboards to organize, which I can do sitting down, so I can take things easy and try not to cause myself anymore harm.

At one point in my life I felt that I couldn’t go out. I was turning into a hermit, not wanting to go out because I would hurt more. I had gotten so anxious of the world around me. I’d cancel so many plans last minute because of my pain and fatigue levels. Since I have done a class with occupational therapist, Jo Southall, this has improved no end. Learning to pace properly and listen to my body better is so important. Getting the correct medication levels for myself too has been extremely useful. Having a plan in place for self-care has helped too.

Follow this journey on Bendy Lady Site.

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Thinkstock Image By: SIphotography

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