15 Things No One Tells You About Chronic Pain as a 20-Something

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1. Sometimes you feel like a lab rat/medical experiment gone awry.

House M.D.” doesn’t even begin to cover all the weird treatments and experiments you’ve undergone to aid your health. Your “medical team” becomes the people you know and hear from most.

2. The idea of going out and maintaining a normal 20-something social life is laughable.

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GIF source: The Campus Crop

Think you’re going out for a few drinks tonight? Oh wait, you can’t because of your specific diet, medications you’re on, etc. Friends may be disappointed. You may be bored (really bored). Netflix will be your bestie, don’t worry.

3. Some people are really open and kind about your chronic pain. Some are just the worst.

Explaining your chronic illness truly becomes an art. You read their body language and take their past experience and personality into consideration before divulging your illness. Then, usually, it’s a game of 21 questions.

4. There are good days and bad days.

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GIF source: Cosmopolitan

Good days and bad days depend on a lot of the perpetuating factors you may have. Some days, I’m good enough to take a day trip to go shopping and other days, showering is a legitimate goal if you can make it out of bed.

5. You become your own doctor/pharmacist/advocate.

Doctors can make mistakes sometimes. I double-check all of the interactions of my drugs when I’m prescribed new drugs to make sure I’m not going to accidentally kill myself. Do your research. Many of the things that work for me now consisted of a series of trial-and-error combinations of medicine and therapies.

6. With chronic pain comes new and different priorities and limitations.

The way I best describe any given day is that my life is like an iPhone battery, and I’m on energy-saving mode. Everything from cooking, to getting dressed, to going out to eat, to working take a little (or a lot) of battery. Some things I used to love to do are just not worth it anymore.

7. Chronic pain is a full-time job.

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GIF source: Hilarious GIFs

I’m not kidding. If I could show you my calendar, between all my specialists, I have on average about four doctor’s appointments weekly. Half of them are usually out of town — meaning they’re out of state. I also, on a monthly basis, get acupuncture, chiropractic work, Reiki, massage, trigger point injections and see a personal trainer (who specializes in chronic pain) twice a week to weight train. If something pops up out of nowhere and everything needs to be rescheduled, I’m on the phone for sometimes hours rearranging appointments.

8. Certain foods become your best friends.

When my pain was at its worst about a year ago and I had no medication to help my pain, all that could comfort me was mashed potatoes and ice cream. Turns out, mashed potatoes and ice cream are not a cute look for my body and with my physical limitations, cooking healthy food for myself and exercising is much more challenging.

9. Sleep, above all, is key.

Seriously, if I get no sleep the night before, my whole day and body goes to sh**. Getting enough sleep is worth it.

10. Maintaining a love life? LOL.

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GIF source: Giphy

I haven’t even begun to crack the chronic pain code on this one. I have no answers here.

11. Get a pain guru.

Having someone close who’s been through the ringer with everything you’re dealing with is so helpful. Anytime I call her frustrated about something, she has five to 10 different solutions I never thought of. My pain guru happens to breed puppies. Speaking of which, puppies are just about the best therapy you can have, so get those, too. Nothing feels better than lying in a pile of puppies.

12. You will have haters.

Send donations in their honor to your favorite chronic pain charity.

13. A few people will be inspired by you, a few people may feel too sad to even be around you and a few people may slit your tires when they see you in handicapped parking with a handicapped tag.

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GIF source: Giphy

The tire thing didn’t personally happen to me, but it did happen to someone I know. Don’t forget, just because you can’t see an illness doesn’t mean it’s not there! Don’t be those people.

14. Silver lining: you get to watch every show you ever missed out on and try a lot of hobbies you never thought you’d have time for.

Hobbies I’ve started since medical leave: learning French on Rosetta Stone, writing, flower arranging, pottery, painting/sketching, jewelry design, puppy socializing, volunteering at a pit bull rescue, cooking, baking and reading.

15. Chronic pain has forced me to see the world in a different way. It has forced me to embrace all of my vulnerabilities and genuinely be a better person. Ironically, because of my chronic pain, I am now finally able to do exactly what I always dreamed of.

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GIF source: Picmonicblr

Follow Erica’s journey on Slightly Distressed Damsel.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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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10 Truths About Making Friends When You Have Autism

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I’ve heard some harsh and untrue comments based on personal theories about people with autism making friends. Some people go so far as to claim those with autism are unable to make friends, and that comment alone is shocking. We may have difficulty making friends, but we’re certainly able to make friends. It needs to be the right kind of person who’s willing to understand and accept the individual for who he or she is. If there were less statements about how “those with autism can’t make friends,” I think that alone would make it easier for us to do so and for other people to open up to us. The way the media presents autism is important, and if we can present it in the right way and help eliminate these stereotypes, things would be much better for us.

As an adult with Asperger’s syndrome, the general public’s perception of autism makes me want to fall into my shell and recluse myself from the world. So my advice would be to stop talking and start listening to those on the spectrum.

Recently, I asked my Asperger Syndrome Awareness Facebook community this: Do any other Aspies struggle making and maintaining friendships?

These are some of their answers.

1. “I find as you get older you learn to adapt better in social situations, but sometimes we just don’t want to be social — not because we are depressed — we just want to be alone.” Melanie Reinburg

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2. “I have very few close friends, and many of them also have Asperger’s or another form of autism spectrum disorder (ASD). We get along because of mutual understanding of each other’s strengths and limitations.” — Rhiannon Hartwell

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3. “I can make friends. It’s maintaining them [that’s] hard.” — Evenstar Hebert

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4. “I always waited for people to ask me to join them, and always have. I went to a couple of groups (and still go to them). Over time I’ve become more and more confident though.” —Jack Pickering

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5.Quite a few, I have found, say all the right things, pretending to show themselves as understanding towards Asperger’s syndrome (AS), but still seem unable to cope if things become difficult.” — Lucy Maull

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6. “Friendships? Not a problem. Relationships, however…” — Jonny Gill

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7. “I just enjoy being with those few close friends who I have a great bond with. My acquaintances just don’t know how to relate to me completely.” — Chris Buley

Chris Buley

8. “The right people will show up in your life [at] the right time. It doesn’t mean they are meant to stay forever. Those that never fail to be your friend are untouched by time and space.” — Fabiana Fabis

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9. “My desire and need for isolation is so great and I almost never feel lonely… nurturing my budding friendships with the time and attention needed is very difficult for me.” —Dymphna Dionne Janney

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10.I’m learning to let go and focus on the few friends that are truly worth the effort (and are actually the ones that feel just as different as I do)!” — Renata Jurkevythz

Renata J

*Some responses have been shortened and edited.

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This Woman With Down Syndrome Is Paving Her Way in the Fashion World

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Laura Green has always had a passion for fashion.

The 28-year-old with Down syndrome also has an eye for business. Now, she’s found a way to combine her interests — she started her own business selling fashion accessories.

Green, who lives in Cheshire, England, completed some college focusing on business and retail, but had to leave early because she was bullied, she explains in the video produced by The BBC below. After spending some time looking for jobs to no avail, she decided she’d had enough. That’s when she went on to pave her own way in the fashion world.

“I would say it’s very successful,” Green, who describes her style as “glitz and glam,” says in the video below. “I would say I’m living the dream.”

To hear more of Green’s story, check out the video below.

Related: He’s 23, Blind, Nonverbal. And He Started His Own Business.

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These Artists Prove You Don’t Need 46 Chromosomes to Create Stunning Art

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One organization is ensuring the world gets to see some incredible art created by people with Down syndrome.

After Suzie Moffat’s son, Max, was born with Down syndrome in 2007, she became increasingly fascinated with the creative nature of people with the condition. With a background in the art world, it made sense that Moffat, from Cheshire, in Northwest England, began to interpret this new perspective on the world through art.

“It was my way of trying to understand his condition,” Moffat told The Mighty.

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Suzie and Max Moffat (copyright Paul Moffat Photography)

She began working with the Down Syndrome Association in the United Kingdom to put a call out for artists.

“The idea originated just as a way to meet other families,” Moffat told The Mighty. “But, then I started to realize the talent was incredible and the artists deserved to be recognized.”

So Moffat and her partner, Paul Moffat, put together a small public preview exhibition in 2012. It was a success, and Heart & Sold was born.

Since then, Heart & Sold’s public acceptance has continued to grow — the Duke and Duchess of Cambridge even accepted one of their original works of art for Prince George’s nursery in 2013.

Heart & Sold’s goal is to support and encourages all kinds of artists with Down syndrome, from photographers and filmmakers to various types of visual artists and sculptors. Its staff works closely with the artists and their caregivers and are often thrilled to see them go off on their own to host successful solo exhibitions and receive commissions.

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Suzie Moffat with Heart & Sold artist (copyright Paul Moffat Photography)

The organization continues to grow — this fall it’s putting on exhibits in London and Manchester, as well as hosting its first international exhibition in New York City in October.

But despite all the exciting progress, Moffat says it’s really all about the art. Art, she says, that can stand on its own merits and doesn’t need to be defined by the condition of the person who created it.

“At the end of the day, who made the art, whether or not they have Down syndrome, doesn’t matter,” she told The Mighty. “It’s whether or not you want to put it on your wall.”

Check out some of the Heart & Sold artwork and artists in the images below: 

'Dollar Pancakes', photograph by Rachel Handlin
“Dollar Pancakes” photograph by Rachel Handlin (Copyright Heart & Sold on behalf of the artist)
Sunset & flowers, Cornwall
“Sunset & flowers, Cornwall,” acrylic painting by Tazia Fawley (Copyright Heart & Sold on behalf of the artist)
Dominic Bennett, Artist
Dominic Bennett, Artist (copyright Paul Moffat Photography)
Aurora Freeze, acrylic painting by Anthony Childs
“Aurora Freeze” acrylic painting by Anthony Childs (Copyright Heart & Sold on behalf of the artist)
Robert Dixon, Artist
Robert Dixon, Artist (copyright Paul Moffat Photography)
Sonic Screwdrivers, Ceramics by John Groarke
Sonic Screwdrivers, Ceramics by John Groarke (Copyright Heart & Sold on behalf of the artist)
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Amy Ellison, Artist (copyright Paul Moffat Photography)

 

Check out the Heart & Sold website for more information on upcoming exhibitions, or to learn more about the artists. 

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How You Can Play a Role in Your Child’s Sensory Development

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Do you think you don’t have a role in your child’s sensory development? They’re just who they are and that’s that? You have more influence than you think  100 percent guaranteed.

Back in the olden days — the ’90s — I was an undiagnosed, sensory mess.  My temperature regulation, sound sensitivities and being prone to carsickness made me “high-maintenance” and “difficult.” And before name-calling wasn’t PC, my dad referred to me as “weirdo.” I’m sure he meant it in the nicest way possible. Remember, this was way before Dr. A. Jean Ayres’s sensory processing contributions had gone mainstream. Plus, sensory processing support groups on Facebook didn’t even exist. How was he to know back then that my “weirdness” potentially affects one out of every six kiddos?

I adapted out of necessity by sleeping in the car during road trips, bringing a coat along with me wherever I went and wrapping towels around the clock at night to muffle the maddening ticking sound. But now, I’m a mom and one of my biggest duties is being the sensory barometer. Like all parents, I’ve discovered I’m the sensory hub of the household.

As the sensory concierge, my little bodies come to Mama when they need anything. They’ll say, “I’m cold, I’m hot. I’m hungry. It’s too loud. I can’t hear it. That smells funny. It’s squishy.”

While my child with sensory processing disorder will say, “The ocean water feels like nails. The sand burns. My head is pounding with sound. Make the birds stop chirping. Looking at that makes me gag.” 

And so I accommodate their sensory systems the best I can. I adjust the temperature or modify clothing. I turn down the volume, open the windows and spray the chirping birds with my water gun so that my child’s head doesn’t explode. (No birds are hurt in the process, but they do get a bath.)

As a result, I’ve become a sensory chameleon, putting my sons’ needs first and sucking it up when I’m uncomfortable. Oh, the many things moms do that will never be recognized! I may sound like a sensory martyr, but there’s a method to my approach.

Why do I cater to my kids’ sensory needs? First of all, because I get that you can feel like you’re stuck on a roller coaster when riding on the freeway at 80 miles per hour. Watching the other cars weave in and out of lanes makes you dizzy, and the sun beating through the window can make your vision blurry, your neck feel hot and make your bile climb up your esophagus.

I understand my son’s sensory dysfunction because I have it on a much smaller scale then he does. And so he’s had hours upon hours of occupational therapy, sensory integration and feeding therapy. I’ve read every single OT book and tip out there to learn what I can be doing on my watch.

And I’m grateful for occupational therapists Lindsey Biel, Angie Voss and Britt Collins for sharing their knowledge. They’ve allowed moms like myself to be proactive in helping our kiddos.

Secondly, the more I help him adapt, make changes and prepare in advance, the more it helps him learn to self-regulate and meet his own sensory needs. He knows to watch a DVD in the car to keep from getting motion sickness. He stims, either trampoline or pacing, before school to calm his internal turmoil without my prompting. He can articulate his body is craving heavy work and proprioception (he doesn’t use that word, I do) and pressure squeezes by backing up and placing my hands on his shoulders. 

By accommodating him, he feels better. In turn, he knows he has the power to make himself feel better when he’s out of sorts, uncomfortable or in debilitating pain. I teach both of my kids by showing them it’s possible. And then other times, it’s not because all lessons are multi-layered.

Over spring break, my son with sensory processing disorder (SPD) refused to wear sunglasses, ate a blue snow cone and a quesadilla (yes, 100 percent gluten and casein molded together!) and went on clunky, jerky rides at the Yuma County Fair. I let him because he has to be the master of his own sensory system. He’s highly sensitive to what goes into his digestive system. And at 13, I’m assuming I only have another five years (or less) where I can control what goes into his body.

At some point, I’ll officially hand over the reins and he’ll have to steer. So, I let him drive that day. And that night as he lay in my lap with his hands over his eyes, wincing in pain from the headache of the century, he cried, “Mommy, I made some really bad choices today!” That’s a lesson he couldn’t have learned by me badgering him.

As their mom, I’m also the sensory tour guide. I plan trips, adventures and projects to expose my kiddos to the great, big sensory world out there. We live close to Disneyland and go there often for sensory therapy day. The crowds, the sounds, the colors, the tastes and smells make this a plethora of sensory stimulation. We get through it — and they want to — because it’s fun.

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On a simpler note, I make sensory bins, although my kiddos respond quite differently to these contained boxes. My oldest can search for toys and play with rice and beans for hours at a time. When he’s done, we put the lid on and wait for his next stereognosis experience. With my youngest, he’ll dump the rice and beans out onto the lawn in two seconds flat and be done. No sensory bins for him, thank you very much. So I plan and expose them to sensory stimulation to meet their individual needs any way that I can.

At the end of the day when I’m sensory drained, I go back to my sensory well and refill, because I not only predict their sensory needs, I’m paving the way for them to have a sensory fantastic life. I’d like to encourage other parents to do the same. It’s easy as parents to forget that have such a massive influence on our kids’ lives and even their sensory systems. And it’s my hope that pediatric OTs will encourage their clients’ parents and arm them with the tools to add to the sensory foundation they are creating.

Jackie Linder Olson the-mighty-07092015-002

Follow this journey on Peace, Autism and Love.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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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They Tried to Keep This Fighter With Down Syndrome Out of the Ring

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Five years ago, Garrett “G-Money” Holeve stepped into a Mixed Martial Arts (MMA) gym with his father in Cooper City, Florida. Ever since, fighting has been a passion for the 25-year-old, who has Down syndrome.

I fight because it makes me happy,” Holeve told ESPN. “It makes me feel good.”

However, despite his enthusiasm for the sport, many obstacles have prevented him from pursuing it.

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In August of 2013, Holeve was preparing to fight David Steffan, a fellow MMA fighter and former Special Olympian with cerebral palsy. Twenty minutes before the fight, the state of Florida served the fight promoter with a cease and desist order, subsequently canceling the event.

“He was devastaed,” Holeve’s father, Mitch Holeve, told The Mighty.

Despite the fact that both Garrett Holeve and Steffan had passed the necessary physicals beforehand, the state would not allow them to compete in a sanctioned MMA fight.

“There was a general fear in the community, especially on the regulatory end, that it wasn’t a good thing for the sport to have people with disabilities fighting, because, God forbid one of these guys get hurt, [they thought] it would be bad news for the sport,” Mitch Holeve told The Mighty. “It was discriminatory. They had labeled Garret with Down syndrome but didn’t even know what his ability was.”

Father and son got in touch with Disability Rights Florida and sued two of the state’s authorized sanctioning organizations for not complying with the Americans with Disabilities Act (ADA). Garrett Holeve testified in Florida District court that he had just as much of a right to fight and compete in MMA as anyone else. The legal battle ended in January 2015 — Holeve would have the right to fight.

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Garrett Holeve with his father, Mitch. Courtesy of Mitch Holeve.

Many came out in support of Holeve’s battle during the legal proceedings. The National Down Syndrome Society released a statement of support and even gave him their Self-Advocate of the Year Award. A Change.org petition for his cause received nearly 125,000 signatures.

“Everybody deserves the right to pursue their passion,” Mitch Holeve told The Mighty. “We’ve never treated him any differently, so when he’s denied his right to be like everybody else it hurts him.”

Now, finally, after two years of legal battles, Holeve will have his fight. On July 11, Passions Night Club in Hollywood, Florida, will host Holeve and Steffan in a sanctioned MMA fight.

“He’s excited. He’s thrilled to have the opportunity to fight at home. It’s been his dream for two years now. He really wants to show everybody what he can do,” Mitch Holeve told The Mighty. “It’s recognition of what they’ve achieved.”

Check out some more photos of Garrett Holeve below: 

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Courtesy of Mitch Holeve.
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Courtesy of Mitch Holeve.
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Courtesy of Mitch Holeve.

Below is the full feature ESPN did on Holeve: 

For more information on the fight or on Garrett Holeve’s journey, visit his website.

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