Gentle Exercises You Can Do During a Flare or With Significant Chronic Pain

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This post is part of September’s My Mighty Month Challenge. You can learn more about the challenge and sign up here.

Often when we think about exercise, we think of intense physical activity, but that doesn’t have to be the case. On days when you are in pain or are having a flare, gentle movements can be just as beneficial as strenuous ones.

On painful days, low-impact workouts like stretching, swimming and yoga can help you stay active without adding to your pain. Simple movements and breathing exercises may even help during a flare.

If you are in pain, start small, Anne Taylor, a certified yoga therapist who teaches in New York City, told The Mighty. Start by saying, “Let me just try some gentle breathing for say two to three minutes,” Taylor recommended. Prop yourself up with pillows, put yourself in a position where you feel comfortable and focus on your breath.

We asked Taylor to walk us through some yoga poses that are easy to do on high-pain days. Here are her recommendations.

1. Seated Stretches

Taylor: So if you’re going to do anything in a chair at home, the first thing you want to think about is you want the hips at least at the height of the knees, never below, because that’s going to strain the back. So the first thing Rachel is doing is finding her placement, really grounding through her legs. Again, it all comes back to just finding some body awareness because if you’re in pain, the last thing you want to think about, sometimes, is your body, and sometimes medications just give us that opportunity to kind of disconnect, and I’m asking you to connect, just really briefly.

So the first thing she does is find her feet and just feel the toes spread wide. See how her hands are relaxed, she’s not clenching her hands. So maybe she just stretches her arms wide, inhaling. Bring the [arms to] shoulder height — in the T position. The first thing there is just to see how that feels. If that feels stressful, then obviously bring your arms back down, and you may need to pass on this one.

But maybe she just reaches to the right and drops her right hand down, and she’s not pulling so that she’s yanking the shoulder up to her ear. She’s just creating some space and she’s just going to just start arc a little bit to the right, creating some space in the left side of the ribs and she’s anchoring through her left. She’s not falling back. She’s not falling forward. She’s just really reaching and breathing into the left side, so that she gets some space here.

We’re back to that concept of prana. If it hurts your arm, maybe go here or even rest the hand on the head. How does that feel? [Rachel nods good]. So she gets some space here, but she’s not stressing her arm. And then she’s going to come back, and we’re going to put another chair on the other side. Let me just get the chair in place, and she reaches and she drops her left hand down. I like the idea resting into something — and then she just drops that right hip down — because otherwise she’s going fall into the right side and collapse into the left. So I’m going to come right behind her, and just anchor through the right hip because that’s what’s going to create some space here.

For a lot of people, this can feel nice just because of the space. Breathe into the chest wall, breathe into the side of the armpits. Build a sense of just melting this rib cage. If you’re very flexible, don’t hang on the pose too long. Come back. Even if you’re not, you just don’t want to overstretch. [Rachel begins to repeat going to the left and right.]

She’s going to inhale and breathe into the armpit. Maybe she exhales, goes back. Once her hand drops, she inhales, breathes into the armpit. Exhale bring the hand back. Inhale, breathe into the armpit. Exhale back. And sometimes if you see me closing my eyes when I’m teaching, it’s because I’m actually envisioning the body from the inside out. It’s almost like I’m in a submarine and I’m seeing everything inside. And then she’s going to come back. Come back to the middle, and let it go. Hands down and breathe.

2. Sun Breaths

Taylor: If you’re having a day, maybe a little low energy, think about some simple movement to create some movement again in the rib cage and also to bring breath into the body.

So there’s something in yoga call sun breaths. So Rachel’s just going to keep her elbows soft and reach up as if she’s pushing energy up. She’s soft and she’s pushing out through the space on the inhale and then she’s pushing the energy down on the exhale, and it’s not rapid. It’s almost as if she’s feeling like there’s this little cloud of energy that she’s pushing up as she goes up on the inhales. And pushing out and down on the exhales. And if you go slow enough, you’ll start to feel it. So she’s just imagining, creating what they call prana vayu. Prana vayu is a current of energy which lifts you up on the inhales. Apana vayu, or that grounding energy, on the exhales as if she’s just pressing down.

In her body, she’s also embodying those two qualities. Her feet are grounded, but they’re not gripping, and her head is lifted, but she’s not throwing her chin up or pulling up with her shoulders. She’s just letting her rib cage move naturally with her arms, so it’s not like a jumping jack. There’s no phrenetic quality to it, but it’s not so slow that it’s uncomfortable, but it’s soft and quiet enough so that she can start to feel her own energy in her body almost like she’s a generator, and she’s generating her own energy by just moving. Maybe do this 10 times and pause. Always pause. I say less is more. Don’t go to the most extreme. Don’t go to the most difficult place. Start with a softer place and build up. A lot of times, we forget. We’re always trying to jump to the next level. The most interesting places are the soft, quiet places where you can feel yourself.

3. Supportive Poses Lying Down

Anne: I’m just putting a blanket under here [Puts blanket under Rachel’s back, Rachel is lying down on floor] that just gives her a little tiny bit of support, so that’s what you’ll be doing for yourself. And something to think about when you’re here is just even sensing where your shoulder blades are, sensing where your hips are and breathing into the back of the lungs and feeling a sensation of relaxation in the back of the waist. So maybe from here she just bends one knee and then the other, grounding through the feet, and just even feeling the earth there can be quite significant.

So I’m going to line up her heels so they’re even because the left leg is slightly further forward than the right. So maybe she just works on just bringing the left arm overhead on your inhale and looking to the right. So stretch your back inhaling looking to the right simultaneously. So there was a little out of sequence because I didn’t cue her properly. Bring the hand back and the head to the middle, so the hand was quicker and the head was slower. Then exhale back. So we’re back to the whole prana concept of the energy in the armpit, so she’s creating a little energy. So she’s going to reach her right arm over her head and look to the left and vice versa, so she’s moving side-to-side and she’s turning away from the arm.

If for any reason it creates pain, you don’t want to bring the arm so far back that it’ll hurt you — so we’ll let her go. She has a lot of range in her shoulders, but, again, you don’t want to exploit the range. You just want to feel like you’re getting a stretch, but you’re not yanking on your rib cage. I’m going to bring that there so that she doesn’t go as far. How does that feel? [Rachel answers good]. So it gives the arm a chance to rest, then she can bring it back slower. So she’s just inhaling and just looking away and just reaching so that what I’m thinking about is getting her some energy in her armpits and some mobility in her ribs because sometimes with pain, anxiety, depression, the diaphragm can feel stuck. It’s hard to breathe. It’s like your world shrinks, and it’s not only your physical world shrinks and your emotional world, there’s almost like a shrinkage of the energetic world, and you think of your lungs and your diaphragm as part of that gateway to that energetic universe. You’re just creating some movement there so that there’s the possibility for just a little more space, not only physically with the breath but emotionally and energetically.

And if you tend to run on the anxious spectrum, you can take longer exhales, which is going to start to quiet the autonomic nervous system. And if you run on the depressive end of the energy spectrum, meaning your thoughts not your physical body, you can have fatigue but still be very anxious, so if you have fatigue in the body and fatigue in the mind, you can take longer inhales. It’s almost like opening the gateway just a little bit more to let a little more energy flow in. But if you tend to have too much energy going and there’s almost like an overload of the circuit, then you go a little slower. You take a shorter in-breath and a longer out-breath as if you’re just letting off some of that extra energy. So she’s just going to do one more round, and her arms are not going quickly.

If you find that you’re going quickly, then maybe you shorten the distance, you can even bring your arm down here [places another blanket under her arm]. See how that feels. If she feels like it’s just too heavy to bring the arm up and down, she shortens the range. Not with the idea that that’s her permanent range, but just that for this time, she doesn’t have to go as far down. For example, if it’s fatiguing to hold your arm in space, you just bring it down a little more. The blankets are not even in their height, so if I had to do it all over again, I would put the yellow one next to her on the left side as well as the right, but it’s just shortening her range, so that she’s not over-reaching and yanking her ribs or shoulders or her hips around.

She’s just going to rest there for a minute, and just feel her feet on the ground. And then maybe she can just stretch her feet out. This is a very simple thing. It’s deceptively simple. All I’m going to do is put a bolster on her, no, she’s going to rest against it. Now, first of all, I see her knees locking a little bit, so I’m going to put something under her knees. I’m going to take these away from her arms. The other reason I have them there is for some people, they tend to kind of collapse into the ground. She’s not really collapsing in this position, but for some, it can feel nicer to just let the arms rest into something. Just putting a blanket under her knees. Lift your knees for a second. You don’t have to have fancy yoga blankets. You just want something that kind of interrupts the locking of the knees. So I’m just going to place her feet, so that they’re a little more even. I’m going to pull this bolster, so she has more space to press into, so I’m going to step out of the camera range, but you’re just going to see that this bolster is an imaginary wall. So this is nice because she is getting some work in the legs. Do you feel something, Rachel? In the legs or the feet?

Just putting a blanket under her knees. Lift your knees for a second. You don’t have to have fancy yoga blankets. You just want something that kind of interrupts the locking of the knees. So I’m just going to place her feet so that they’re a little more even. I’m going to pull this bolster, so she has more space to press into, so I’m going to step out of the camera range, but you’re just going to see that this bolster is an imaginary wall. So this is nice because she is getting some work in the legs. Do you feel something, Rachel? In the legs or the feet?

Rachel: I do. I feel like the energy going down into the bottoms of my feet.

Taylor: Whatever’s going on for you, if you’re in a wheelchair, if you have pain, it’s rare that you get this experience of any kind of significant weight bearing or a sense of activation in the feet or the legs, so this just gives her some awareness in the legs, but it’s not so significant that it’s the same as her standing like she did in the earlier pose. She’s just having a sense of being grounded.

4. Standing Supportive Breathing

Taylor: For anyone who carries any kind of pain or tension in the neck and shoulders, it can feel nice to just get some space. [Rachel is standing and Taylor wraps a scarf around Rachel’s midsection.] So lift your armpits. If you’re doing this at home — I’m doing it for her — you can always ask a friend to do it. Just wrap, and it’s not tight. There is a style of yoga where you would use a yoga belt, and it’d be very tight. What I’m creating is just using this scarf to just give her some awareness, which means that she can feel where her body is in space and kind of sense herself, not from a place of reacting to the pain or trying to distance yourself from the pain, but just to have a subtle dialogue with her body.

I’m just crisscrossing, if you’d be so kind, Rachel, to turn around, so you can just see. It’s just wrapped around the back and across the top of the shoulders and then crisscrossing. This is not tight. It’s not meant to pull her shoulders down or to wrap or tighten her ribs. It’s just to create some sensory awareness under her armpits. Where the chest wall and armpits meet is said to be a space where prana or energy is stored. When you’re having pain — or even a physical, mental or emotional pain — there’s sometimes either a heightened nervous system response of a sense of being depleted.

So you’re just going to exhale round, and just imagine there’s a big physio ball in front of you. Soften your knees and breathe and then inhale and open your chest. Imagine the ball is behind you now, so you don’t want to throw your head back. You just want to feel like there’s a support here. Then exhale round, so nothing dramatic. It’s not about how far you run forward or how much you backbend, it’s about breathing into your rib cage and just opening and letting the arms just. They’re not pulled back like you’re doing a gym exercise, they’re just softly reaching as if you’re expanding and feeling like the lungs are reaching all the way out to the fingers — so there’s energy going all the way out through your hands. Then you’re inhaling and just opening the chest.

I’m going to have you turn sideways, so they can just see it from the side. Again, she’s just rounding on the exhale when her breath comes. Don’t force it. Don’t be in a hurry. Inhale opening, breathe into the chest, and just let the arms be a little more relaxed. And then exhale, rounding soft as if the breath is just falling out of you and then you start to open and create a receptacle for the breath to enter your body and give you more vitality. So on a day when you’re having emotional distress you can imagine this just getting rid discursive or negative thoughts and then inhaling and taking in the possibility of something new.

If you’re in physical pain, the same thing. You give yourself a chance to step away from the discomforting and just let go of the experience of the physical pain as your primary experience. Still there, but it’s just sort of shelved. And then you exhale, soften. When you inhale, take in the possibility of your own wellness. Again, this is not a reductive statement, but just a sense of just making room for something else. If you have a house full of things, and you just get rid of few things to make room for something else. You still have your house, that would be you. You’re just creating space new possibilities. And then she’s just going to relax, drop her arms.

5. Modified Tree Pose

Taylor: Put it back, wrapping forward toward your front body [Taylor hands Rachel a scarf to wrap herself with]. She’s going to open it a little bit, so there’s space so that she has a soft band of fabric that’s about this wide. She’s just wrapping, wrapping around the kidney area, which falls just below the rib line. She’s not making it tight like a cumberbund. She can double it because of her waist, but some people can just tie it in the front. It doesn’t have to be a very long piece of fabric, but just enough so that you get a little sense of — it’s almost like — containment. This is sometimes referred to as the hara in Japanese culture, which is right about here, actually [points to Rachel’s chest] — our power center, the danti or dantian in Chinese medicine. It’s the Manipura chakra in yoga, which means basically this is where your power is.

I’ll let her spill forward, put your navel forward like you’re aggressively pushing forward. So we’re pushing like, “I need to have control.” Maybe you’re dealing with doctors that are difficult or you compress and you go back like, “I’m afraid. I’m giving all my power away.” So I’m going to let her be right in the middle, so she’s neutral, so you find that center. Her feet are a little turned out. That’s OK. Just keep them soft, and don’t turn them out significantly because if they do — if I turn my feet out a lot, I open the front of the pelvis, which may be helpful for some, but I’m also narrowing the back of the pelvis, which can create tension in the buttocks.

I’m just going to let her hands rest here [Rachel’s hands are by her side]. She’s going to choose a point to focus on. So if you’re having a day where it’s hard to focus, feeling depressed, you’re feeling anxious, or you have a lot going on, maybe a tree pose — it could be a very modified tree — may just make you feel just a little bit better. It just brings your attention into your body, which allows you to feel a sense of living in your body.

She’s going to look at a point in front of her. She’s choosing a point somewhere, maybe off in the distance — four feet, six feet. Dancers use this when they’re dancing. It’s a spotting point. In yoga, they call it a drishti point, which is your gaze point. And she’s not going to bring the foot up way into the thigh, which is what we associate with tree pose, but she’s going to ground through the ball of the foot on the right and bring the heel into the calf of the left. Maybe you bring it a little forward if you feel any pain. You can even bring the foot down and just rest on the ball of the foot. It doesn’t have to be a big turnout. She’s just going to rest there and think about this leg moving into the foot, and this foot moving into the leg. It’s very gentle. It’s more about coming into her center rather than how high and dramatic she’s making the heel. She’s just working there from her center and thinking about the triangle of the left foot or the four corners of the left foot and then thinking about resting on the ball of the right foot. She’s already shifting her weight, in theory, into the left foot, but she’s bringing that left leg back into the right. So again, not always leaning into one thing or another but always trying to come and meet in the middle. She can bring her hands wide if she wants. That sometimes gives people a sense of being expanded. Why is this band on her waist? Because it’s going to remind her to breathe into her kidneys, which can be very calming. Just letting go. Breathing into the back of the waist, so it’s just a reminder. If I was teaching a class, I might have my hand there for a moment. I might have my hand here in between the shoulder blades, and I’m just going to maybe put something right on the top of here. Find something in my house. It doesn’t have to be fancy things when you’re doing yoga. Just this little cap, which it’s actually from my cat’s treats. Rachel likes my cat. She’s just going to feel that little piece of plastic on the top of her head, and she’s going to imagine just lifting up into it. When you’re dealing with emotional, physical pain, there’s a tendency to kind of compress and shrink, so this is just giving you an opportunity to lift up and open and feel that you can expand. I’m just going to reach up here, and she’s just going to breathe into the space. Her gaze is steady. You’ve had a night of difficult sleep, or you’ve had caffeine in the morning, you’re balance may not be perfect, but you do this to help build a sense of balance. Not to balance because you’re perfect, but you just do it to build a sense of balance.I’m going to take this away, and she’s going to bring her hands down and let go. Good.

She’s just going to rest there and think about this leg moving into the foot, and this foot moving into the leg. It’s very gentle. It’s more about coming into her center rather than how high and dramatic she’s making the heel. She’s just working there from her center and thinking about the triangle of the left foot or the four corners of the left foot and then thinking about resting on the ball of the right foot. She’s already shifting her weight, in theory, into the left foot, but she’s bringing that left leg back into the right, so, again, not always leaning into one thing or another but always trying to come and meet in the middle.

She can bring her hands wide if she wants. That sometimes gives people a sense of being expanded. Why is this band on her waist? Because it’s going to remind her to breathe into her kidneys, which can be very calming. Just letting go. Breathing into the back of the waist, so it’s just a reminder. If I was teaching a class, I might have my hand there for a moment. I might have my hand here in between the shoulder blades, and I’m just going to maybe put something right on the top of here [gestures to Rachel’s head]. Find something in my house. It doesn’t have to be fancy things when you’re doing yoga. Just this little cap, which it’s actually from my cat’s treats. Rachel likes my cat. She’s just going to feel that little piece of plastic on the top of her head, and she’s going to imagine just lifting up into it.

When you’re dealing with emotional, physical pain, there’s a tendency to kind of compress and shrink, so this is just giving you an opportunity to lift up and open and feel that you can expand. I’m just going to reach up here and she’s just going to breathe into the space. Her gaze is steady. You’ve had a night of difficult sleep, or you’ve had caffeine in the morning, your balance may not be perfect, but you do this to help build a sense of balance. Not to balance because you’re perfect, but you just do it to build a sense of balance. I’m going to take this away, and she’s going to bring her hands down and let go. Good.

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To the People Who Assume I’ve ‘Stolen’ My Disability Parking Permit

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I can walk, but I can’t walk very far, and it’s always with pain and fatigue. I can stand, just not for very long. I use a mobility scooter — a small version of an electric wheelchair — and walking sticks. 

Limited as my mobility is, I’m still made to feel like a faker. I don’t look sick enough. I don’t look disabled enough. I’m too young.

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If I get these comments when using medical aids, imagine what happens on the rare occurrence that I don’t use my aids and park in a disabled space, which I’m legally entitled to use. You got it. All hell breaks loose.

Just because I don’t fit society’s view of “disability” or conform to how a sick person should look and act. The much-used universal symbol for disability — the wheelchair — doesn’t always reflect reality. The definition of disability is often pigeonholed as someone requiring a wheelchair, or, at the bare minimum, crutches.

It’s so much more than that.

Painful, invisible conditions exist that entitle a person to a disability parking permit. Unfortunately, as has been demonstrated all too often of late, these invisible conditions are often assumed illegitimate by strangers. We are branded as fakers and con artists. Told over and over that we don’t look disabled enough to be entitled to a disability parking permit.

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Take the recent story of Justine Van Den BorneWhen Justine, who was diagnosed with multiple sclerosis at 35, parked her car in a disabled space at a shopping center in Melbourne, Australia, she had no idea she would return to see a nasty, anonymous note stuck on her windshield that read, “Did you forget your wheelchair?” It was placed directly above her disability parking permit on the dashboard.

How could this be? Simple: Justine walked into the shopping center.

Our opinions and conclusions are greatly influenced by what we see. If someone looks healthy, they obviously can’t be too sick, right? Too often these judgments are completely wrong. I ask you this: Would you like to stop breathing on the idea that air, being mostly invisible to the naked eye, isn’t a real thing? No, I didn’t think so!

Invisible illness, ghost illness or whatever terminology you want to use, manifests internally, affecting the body from within. Many don’t understand what an invisible disability is really like for a person. Extreme fatigue, chronic pain, disorientation, dizziness, vision impairment, difficulty with mobility, cognitive issues, neuralgia…the list goes on and on.

We smile, we laugh and we get on with things, trying to live each day to the best of our abilities and be happy. Know this though: Despite my apparent healthy appearance and sunny disposition, I am legally disabled. I am battling a daily struggle. I am restricted by chronic pain, fatigue and neurological dysfunction, including numbness, weakness and intermittent spasticity in my limbs.

As I recently described in a conversation to my doctor: “My right leg has been numb from thigh to ankle for the past three weeks; my hands are tingling and short-circuiting like a failing strobe light; fatigue has knocked the wind out of my sails; pain is having a party at my expense; the nerve burn is kicking into overdrive in my arms…you want me to keep going?!”

These symptoms aren’t always obvious to the untrained observer, so even though my life is far from normal, I’m often mistaken for having a perfectly functioning body.

And I’m persecuted for it.

We need to start assuming the best of people instead of the worst. Don’t jump on a person with a disabled parking permit just because the driver or passenger isn’t in a wheelchair.

As Justine, who took the note as an opportunity to raise awareness for invisible illness, posted on Facebook: “I am sick of people like yourself abusing me on my good days for using a facility I am entitled to.”

If you see a disability parking permit but don’t see a wheelchair, don’t adopt the negative stance and assume the person has stolen it.

Yes, I understand that faking disabilities can and does occur, but I choose to believe that the number of instances is relatively low.

We need to advocate for the rights of the disabled community, but abusing people over a parking permit they are legally entitled to use is not the way to go about it.

Reporting the Ferrari double-parked across two disabled spaces without a disability parking permit might be a better place to start.

A version of this post originally appeared on Starbrite Warrior.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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When a Friend’s Brave Act for My Son Knocked the Wind Out of Me

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My son, Caleb, is a looker. He’s only 5 years old, but at 36 pounds and nine surgeries, he’s a real head turner. That wasn’t always the case (says his mom who doesn’t believe a word of that). Even at 2 pounds soaking wet and not at all ready to brave the world, he was gorgeous to me. It took my son a few months to look like a real baby, but he came around. That scary NICU place let him out after seven months, and our days of surgeons, scrubbing in and gown-wearing were over. That feeling was actually short-lived but that’s another story.

One day, I found myself the victim of the proverbial rock and hard place. Our medical supplier called to say our coming shipment was denied due to insurance changes (non-fixable by me and with a full one day’s notice!). I’ll spare you the details and just say it was a nightmare. What does any mom in this situation do? My son’s shipment literally contained his nutrition, the one and only thing he “ate,” his tube-feeding formula. After the phone calls, tears and offers to trade kidneys, I turned to Facebook.

In my desperation and spilling of all emotions to a group of moms who would “get me,” I didn’t realize the settings of the group were open. That means all my friends saw my sad, desperate plea for help from other moms who might have extras of this particular formula.

Let me gently remind you — my horrifying problem involved my infant son not getting his only source of nutrition, his specialized formula, to my house. No, I couldn’t feed him something else, and no, I couldn’t buy it myself. A box of six cans was over $200 or more. At the time, it was the only thing he could get through his g-tube, and it was cost-prohibitive for us.

Jessica’s son
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Then there was this friend… Delaware is lucky to have her. 

Remember how everyone saw my hideous post screaming to the winds for help? My friend, Jessica, saw the post and helped in a way that knocked the wind out of us.

Her son was in the NICU facing IUGR (intrauterine growth restriction), liver failure and coagulopathy (a condition that affects blood coagulation), and even so, she showed an incredibly generous and brave heart.

She saw my post and sent the information of the formula my son needed along with our address to several of her friends and family she thought could help. Explaining our situation, she told them if they could buy and send us the formula, to please do it. No yes or no answers needed to her email.  Jessica told them if financially they could help, to just do it. And did they ever.

Let me spare you the ugly-cry details, but that one Facebook interaction fed my son for months. Within two days, boxes of formula arrived at my doorstep.

The brave, generous and incredibly bold act she took upon herself to reach out to others, and even dig out of their own hearts and wallets to help my family — well, that just changed my life. I saw what the power of desire could do for the better. By the time our insurance situation was fixed, over a month had passed. Sometimes I still wonder… what would I have done otherwise?

Years later, I’m still moved that most of the kind souls who helped us in times of need didn’t know us from Adam or had never heard of my son’s medical conditions. (Caleb has short bowel syndrome, pulmonary vein stenosis and hypertension and gastroparesis.) They just sympathized with another hurting human being.

I try to make a difference wherever I go, because I remember that generosity of spirit. It was more than opening their wallet to my family; they opened their hearts to my son’s heart and literally his stomach.

Give a smile, a dollar, a handshake or hug. If it’s in your hand or heart to help, do it. Even in the most unconventional way, you could change a life. Because I’ll never forget that time my friend used Facebook to feed my son.

Caleb and Noah

Follow this journey on Hey Little Fighter.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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4 Ways to Be a Good Friend to Someone Dealing With a Health Issue

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As I learn how to navigate this new pathway of living with disease, I’m realizing some folks naturally seem to know how to step up and be a friend in this difficult situation, while others mean well but struggle to know how best to help and be supportive. So here are four things you can do to be a good friend to someone with a disability or disease.

1. Love us.

While disability may impact who we are, we’re not defined by that disability. We are people, just the same as someone with a crooked smile or flyaway hair. See us for who we are and love us for our hearts and inner selves. There is much to love about us, from our quirks to our kindnesses, from our hobbies to our pet peeves. Yes, this still involves our challenges, but who doesn’t have challenges? When it comes right down to it, just love and care about us the way you do all your friends.

2. Learn about our conditions.

It means a lot to us when our friends take the time to read up about our disabilities or illnesses. Educating yourself about our conditions has many benefits. You’re likely to better understand why we do (or don’t do) whatever it is we’ve been doing. It might help you to know ways to offer assistance or just allow you to talk with us about what’s going on with our health. If you have a question about our condition, ask us. The gesture of learning about what ails us is touching and shows us how much you love us.

3. Listen to us.

Sometimes we just want to talk about our troubles. These may or may not involve our medical problems, but if they do, please listen. It can be hard to find someone to discuss things with when your health is dicey. Pity and dismay isn’t really the kind of reaction we’re seeking. Neither is it helpful to be assured it must be nothing when it’s something that’s important to us. Mostly, we just want a friend who will listen and give us their attention and understanding. We want a friend who will make no more of what we say than we do. Sharing our challenges isn’t a plea for being coddled — honest! Our feelings need to come out, and having a safe person to confide in can mean the world.

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4. Live your lives with us.

What do you like to do? We probably like to do that, too. How do you live your life? We do the same things. These are opportunities to connect, to spend time together and to offer the company of a friend. Sure, we might regretfully decline an invitation, but that doesn’t mean you shouldn’t invite us the next time. Or the time after that. Even small things are worth doing together. A movie night on a couch can be just as fun and fulfilling as a movie night at the theater — maybe more so. Spending time in the kitchen laughing and talking is absolutely invaluable. Live your lives with us and include us even if you aren’t sure what we’ll say yes to. It will mean so much that you have included us.

Perhaps it takes a little more effort to be friends with someone dealing with a health issue. Or maybe once you begin, you find it’s easier than you thought. There really isn’t a secret formula except to just be a friend. We’ll do the same for you. When all else fails, let’s talk. Let’s plan. Ask us how to help, and I bet any of us would be happy to share our thoughts and ideas. Friends are jewels in life who are to be treasured, especially in times of trouble. So let’s be friends!

Follow this journey on Lupus Rhythms.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To the Parents Whose Child Has Just Been Prescribed a Restricted Diet

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It feels so hard… at first. It feels like the purest definition of overwhelming because it is overwhelming: the beginning of a life lived without what may feel like one of the foundational foods of your family’s diet.

Maybe your child has just been diagnosed with a food allergy. Maybe it’s celiac disease, lactose intolerance or something rarer and harder to explain. Whether it’s a lifelong restriction or a temporary one, the thought of reading labels, re-thinking your family’s mealtimes and being vigilant about whatever your child puts in her mouth seems like a lot to manage right now.

The first thing you might want to do is start searching for replacements for what your child is not allowed to eat. You may want to begin with the one-word suffix “-free.” Gluten-free, dairy-free, egg-free, nut-free – that “-free” word will initially pepper every corner of your consciousness as it plasters itself across the labels of the foods in your pantry and refrigerator. However, before you look for those items, I suggest a different approach:

First, look for the things in your existing diet that already work.

When my already-vegetarian daughter was asked to follow an elimination diet that completely removed dairy, eggs, soy, nuts and wheat from her life, it seemed there was nothing left. However, when we began to look at our average week, there were several meals that worked already. Beans and rice were fine, for example. So was our favorite chickpea soup. Every fruit, every vegetable. We began to marvel out loud at how many things could be made from potatoes.

When I realized there was a place to start, I took out a notebook and opened my cupboards. No matter the item, if it was something she could eat on this diet, I wrote it down: canned mushrooms, lentils, all our spices, artichoke hearts, quinoa, five kinds of rice, Jello mix, sugars, pickles, on and on. I listed every single “yes” in my pantry, and then I moved onto my refrigerator, where I found every vegetable and fruit, salsa and hummus, jam.

From there, I moved onto the meals we could recreate with only minor tweaks. Pasta with butter and cheese was recreated with gluten-free pasta, olive oil and fresh herbs. Many of our favorite morning cereals could stay once we found a nondairy milk we liked. With a quality thermos for her lunchbox, every dinner I’d discovered already worked could become the next day’s lunch

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By the time I was done, I had three pages of “yes” items in my notebook. I sat on the floor of my kitchen with a stack of sticky notes and every cookbook I owned. I labeled promising recipes – yellow stickies for the ones I could make without a trip to the store and white stickies for the ones I could make once I’d purchased some substitute specialty items.

Then, finally, I sat down at my computer and began searching for substitutions. I began with the things I needed to complete the recipes we already liked, searching for the best gluten-free pasta, the most effective egg replacers, something that would approximate soy sauce. I joined some discussion groups and asked questions. I started a folder of “Elimination Diet” bookmarks in my web browser.

Within three days, I had a game plan: a list of meals to try, a cabinet full of new experimental items, a mindset shift that made an enormous difference for our family.

In the end, these diets are still hard. They still require vigilance and planning, and as a parent, you still need to know – and memorize every variation of – the foods on the “no” list. However, starting from the perspective of what does work makes an enormous difference.

Hang in there, parents. You can do it.

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The Mighty is asking the following: Write a letter to the parents of a child with your disability, disease or illness. What do you wish they knew or better understood? What words of advice would you offer based on your own experiences? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Parents Are Pressuring Lego to Make a Disability-Inclusive Christmas Set

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These parents are trying to send Lego a message the company can’t ignore.

Toy Like Me is a parent-run social media campaign calling on the toy industry to produce toys with disabilities. The group, formed in April, started a Change.org petition asking Lego to create a set that featured figures in wheelchairs in a setting other than the hospital. The petition got nearly 19,000 signatures, but the organization says their request was ignored. Now, with the holidays approaching, they’re trying again.

Toy Like Me has submitted to the Lego Ideas platform, a place where people can upload and vote for new Lego design ideas, a set of holiday-themed figures in wheelchairs. The figures come with accessories like Santa beards, wands and white canes. It’s called “Christmas Wands ‘n’ Wheels.”

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Courtesy of Toy Like Me

The organizers are urging people to visit the ideas platform and vote to make the toy set a reality. According to the Lego website, if a project receives 10,000 supporters, it automatically qualifies for a project review by a board of set designers and marketing representatives.

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Courtesy of Toy Like Me
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“For a child with an impairment it would be hugely affirming to be reflected by a brand like Lego,” Toy Like Me co-founder Rebecca Atkinson said in a press release. “It says that the brand is behind them, believes in them and that they are part of the mainstream. For children without a disability, seeing a brand like Lego celebrate human difference helps to create a more positive attitude when they meet someone with an impairment in real life.”

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Courtesy of Toy Like Me

Toy Like Me says Lego has yet to respond to the campaign’s multiple challenges on TV, radio, email and social media.

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Courtesy of Toy Like Me

In July, Lego released a Duplo Community People Set, a collection intended to educate young children about a variety of different people and occupations, featuring a person with a disability. The figure was an elderly man in a wheelchair, which Toy Like Me says furthers misunderstanding about disability as well as the stereotype that it’s something that only affects the elderly.

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Courtesy of Toy Like Me

“Lego has huge cultural sway,” Atkinson said, “and the power to really change perceptions. Children look up to global brands like Lego and learn through them. But if these brands don’t include positive disability representation, then what are they teaching children? That exclusion is OK in real life?”

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Courtesy of Toy Like Me

The organization hopes Lego will soon be the latest to join the ranks of Playmobil, Orchard Toys, Lottie and Makie dolls, who have already answered the campaign call for positive disability representation in toys. Playmobil is now working to produce a line of characters that positively represent disability, to be for released in 2016/17.

Go here to vote for “Christmas Wands ‘n’ Wheels” on Lego’s idea platform.

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