12 Weird Ways My Life Changed Because of My Chronic Illnesses

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I believe chronic illnesses can change your life in some weird ways, but sometimes they are the best ways ever. For instance, I wouldn’t have met some of the amazing people I’ve become such close friends with. My illnesses also make ER trips and words like “eosinophilic” just a part of my life, along with “seizures,” “comas” and “spoonies.” My life has changed in some of the weirdest ways, but it’s a good thing. Here’s a list of some of the weird ways my life changed because of my chronic illnesses…

1. I almost always have selfies from a hospital or ER on my phone at any given moment.

My favorite selfies are when I’m drugged from the medicine I take for my chronic illnesses. Someone should learn to take my phone away, but I think it makes for a good text to my best friend the next day.

2. I’ve lost people close to me.

My experience is that when you become ill, people stay for a little while, but when you can’t hang out and you’re too weak to text them back, they might slowly fade away. That even includes family and close friends. And that’s when…

3. I found the world of spoonies.

“Spoonies” are people who are chronically ill and people who deal with being ill. When you find this world online, it can be like magic. You find people like you, people who enjoy the weird things you do. They take photos of their feeding tubes and their ports like it’s nothing, and for a moment when you have to deal with this world, you could feel slightly normal.

4. I set goals for showering, taking meds, eating and anything else.

My goals might be small to some people, but when you have a chronic illness and take a shower, it can be a big freakin’ deal. It’s hard to shower for me; it’s hard to move, let alone do things that are physically hard.

5. Watching Netflix/Hulu/cable has become a sport.

I can tell you all the good shows out, and I can totally win any trivia game on TV shows and movies. I’m really good at Netflixing. It’s a passion at 2 a.m.

6. I’ve learned people don’t always care when you don’t get better fast.

For some reason, some people don’t understand the chronic part of chronic illnesses. They forget that chronic illnesses don’t get better in three months and with rest, and they forget me. But slowly I’ve found the people who stay and stick with me, and those people are my heroes.

7. The guilt of having a chronic/rare/incurable disease is sometimes worse than the pain from the disease.

I have a few moments when I felt horrid because of the guilt. For example, I couldn’t wash dishes and I felt guilty because of it. I want to be there for my family and friends, and I don’t want to make people do things for me. All the money they spend, all the sleepless nights — I notice them and am really thankful for them.

8. People stare at you for weird reasons all the time.

People with chronic illnesses often get stares, whether it’s because you’re in a wheelchair or using a walker, or you have a port connected to a backpack or a feeding tube sticking out of your stomach at the beach or swimming pool… Or for no reason at all. We learn to deal with the stares and we have to learn to laugh about them. But please don’t stare.

9. I’ve learned to enjoy little moments.

I love being able to wash dishes or go to Target on good days, and I love Facetime-ing with my friends who also have chronic illnesses. You might learn to appreciate the little things, too, like the t-shirts your sister got you and the spoon necklace. The smoothie my sister brought me to bed this morning meant more to me than words can say. It’s all the little things.

10. Doctors might call you more than most friends.

I got a call from my allergist the other day, and even this morning they called me. The nurse totally knew who I was. And this happens a lot.

11. I sleep more hours than I’m awake some weeks and vice versa.

A while back, I slept for a bunch of days in a row. Or wait… I was in a coma (coma joke). But sometimes I can’t sleep. Like this week, my body doesn’t want to sleep unless it’s 2 in the afternoon. But last week I was nonstop sleeping.

12. I accepted that my life from this point on is a chronically amazing one.

I might be chronically ill, but I’m also chronically amazing. I will be sick; it’s just a matter of how sick I will be. But I can find the happiness in each day. I will be OK because I will fight until the day my body has no fight left in it. And even then, I’ll fight like hell. And I know I have some amazingly fantastically people who will fight for me and with me and alongside me.

I’m accepting that I’m sick, I’m ill… That changes me — but in the best way possible. It has showed me so much I never knew. It has shown me how to breathe deeply and enjoy the air. It’s been so amazingly wonderful, and my life is good. I like my life. I like the world I have.

I wouldn’t change my spoonie world for a lot. I was born and my journey is unfolding exactly as it should be. I am strong enough to live in my body.

Follow this journey on Shayweasel.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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 My Son’s Doctor Said a Sentence I Didn’t Know I Needed to Hear

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Last week I sat in the waiting room of the hospital with two antsy children, trying to keep one from dashing into the elevator and the other from twirling into nearby people. Our son sees a specialist whose office is in the local hospital. It’s not my favorite place, but he’s one of the best doctors in the area.

I’m beginning to feel the sweat beads on my face when the nurse finally calls our name… several times. I’m trying to gather our things and the children and finally cry out, “We’re coming as fast as we can!”

We make our way down the hall to the room where they take vitals. I kneel on the floor to help my son with his shoes and then help him step on the scale. “Hands down, buddy!” “Both feet on the bottom.” “Don’t touch the wall!” “Nope – both feet on the scale, buddy!” “Like this! Do what Mommy does!” Until we finally get a fairly accurate weight.

Over to the wall we go where I drop to my knees to put his feet against it. “No squatting.” “Honey look at me – look straight at my face.” “No jumping please!” “Just freeze – just like that!” And we finally get his height. Temperature is next and it takes a few tries – then pulse and blood pressure. “It’s just a hug for your arm!” 

We move down a few doors to wait for the doctor. I’m damp with sweat now and feeling frazzled. I spend the next few minutes keeping little hands out of the trash, pulling him out from under the cabinet, placing tools out of reach, and finally quiet him in the chair with my phone. There’s the light tap at the door. This doctor understands and never makes us wait long. Twenty minutes later we’re gathering our things to leave and the doctor stops to shake my hand on the way out of the exam room. Distracted I thank him for his time and care for my son. Then he stops mid-stride and turns to me.

“Thank you for what you’re doing.” 

He looks right at me as he says it. “You’re doing a great job with your children.”

I sputter out a thank you as he turns and disappears down the hall.

The doctors we see know how much I love my children. They see it when my eyes fill with tears as I ask for answers and help and describe the struggles they face. They hear it when my voice chokes and I share my fears, concerns and hopes. But he’s the first one to stop and thank me and tell me I’m doing it right.

They say it takes a village to raise a child. I used to bristle at that phrase and think to myself, “I don’t want anyone raising our children but me and my husband. We didn’t bring them home so someone else could raise them!” But I didn’t understand what the phrase meant. I can get so consumed in our daily lives and in the many needs and trials and triumphs we experience that I get tunnel vision. I keep my nose to the ground and focus on our family. But when I take the time to raise my head and look around I see that we have a small village helping us raise our children.

I see the grandparents who take our children for a weekend so my husband and I can have some respite.

I see the friend who comes to babysit on occasion so we can go to an event or have a date night.

I see the teachers who text us in the morning to let us know our son isn’t crying anymore and include pictures of him playing.

I see the friend who comes to our house to cut our son’s hair just so he’ll be comfortable with the experience.

I see the therapists who work with my son weekly, partnering with me to help him grow.

I see the friends who listen and cry and pray with me.

I see the family members who call to check in and celebrate milestones with us.

I see the doctors who answer our questions, try new approaches, take my evening phone calls and take the time to get to know our family well.

I see the loved ones who leave us a meal, send a gift card to the coffee shop or mail an encouraging note.

I see the Sunday school teachers who adapt their normal routine to include our son.

I see the strangers who have stopped in the store to pat me on the shoulder mid-meltdown, offer a smile or simply tell me, “It’s OK.

When I stop to look around and see the village, I’m overcome with gratitude. The village feeds us – our souls and our stomachs. The village teaches us and guides us at times. The village encourages us to keep moving forward one day, one step at a time. It takes a village to raise a child – a beautiful village of people to love our family along the way – a community of people reaching out to offer support, encouragement and wisdom. And I love our little village.

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Follow this journey on LaurenCasper.com.

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6-Year-Old With Rare Genetic Condition Nails Zumba Routine

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Audrey Nethery has some serious moves.

The 6-year-old was invited to perform at a Zumba concert in Orlando earlier this month for the International Zumba Conference, according to the description of the YouTube video below. She danced in the sold-out show with some of her local instructors and some of the best Zumba teachers in the country.

Her adorable performance was posted on Youtube on August 18 and it’s now been viewed over 4 million times, and shared more than 27,000 times on Facebook.

Audrey does Zumba for the exercise but also in part to boost her confidence. She has a condition called Diamond Blackfan Anemia, which is a rare inherited syndrome of the bone marrow.

Here is Audrey in a beautiful tutu made by a follower of her page!!!

Posted by Audrey's DBA Photo Booth on Tuesday, August 4, 2015

 

We like it because she has fun and gets some good exercise,” Audrey’s father, Scott Nethery, told Yahoo Parenting. “We also feel that it has helped boost her confidence a bit. Audrey is smaller then other kids her age due to having Diamond Blackfan Anemia, and that bothers her sometimes. However, her size doesn’t matter when she is dancing and she knows she is pretty good at it!”

Watch Audrey’s performance at the International Zumba Conference below:

Check out Audrey’s Facebook page, where she raises awareness about her condition, for more information. 

 

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Why I Cry When I Think About the Girl Who Yelled ‘You’re Bald’ at My Child

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A few weeks ago, I ventured out to a local playground with my three daughters. Ash and Wren are identical twins, and Phoenix has Down syndrome and alopecia areata. Because of the unique makeup of our family, we get noticed, a lot.

We generally have very positive experiences at playgrounds since other children will invite Phoenix to play alongside them. This time was no different. However, just before we left, an older boy who looked to be 8 or 9 looked at Phoenix and said to me, “She’s creepy!”

Because I’m also a teacher, it’s very natural for me to correct other children’s behavior. So even though I wanted to cry at the cruelty she was just exposed to, I replied somewhat angrily, “That’s not nice! You don’t call people creepy because they are different. She’s beautiful. It’s mean to say that.” Then I took Phoenix home.

I stewed about the incident for a while then decided to write a post for my local moms group — not to attack the kid, he was a child after all — but to educate the moms and to encourage them to initiate conversations with their children about how everyone is different and that different is beautiful. I also provided some information about alopecia areata, an autoimmune condition that causes your hair to fall out. The post was very well received. We had hundreds of comments and positive words of encouragement.

Weeks later, I had brought Phoenix with me to a local store. A little girl passed us while walking with her mother. The girl pointed to Phoenix and yelled, “You’re bald! You’re bald!”

The mother turned right to her daughter and replied, “What did you say? That girl has alopecia. You say sorry right now.” And then she marched her daughter right up to us to apologize, which we graciously accepted.

When I think about this incident, I still want to cry because it so clearly illustrates to me that educating others about disabilities and differences works.

It made a difference in how that mom parented her daughter and initiated conversations on a wider scale in our community. It provided understanding about differences. And it left me proud to be a member of a community that is obviously open to learning.

Johanna Hirons the mighty.2-001

Follow this journey on Celebrating Phoenix.

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6 Requests for the Mainstream Teacher of My Child With Autism

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Dear General Education Teacher,

I just heard you’ll be my daughter’s mainstream teacher this year. Congratulations! You’re so lucky. I’m not sure how many students with special needs you’ll have in your class, but each and every one will always add something incredible to the class dynamic. Everyone will grow, learn and remember this year a little bit more than others. That goes for you, too! Here are six things I ask of you:

1. Treat her like every other student.

She’s just another kid in the class. Make sure you speak to her in the same way, with the same tone and at the same volume as you do other children. Her hearing isn’t affected by her autism, and yet, some people think they need to speak louder. It might take her longer to process all the things you’re saying, so have patience. But there’s no need to overly simplify your language. She’s a student in your classroom and on your roster. Please treat her like she belongs there.

2. Presume competence.

She’s got a lot going on in that head of hers. She is very capable and very determined when she’s encouraged and gets the message that someone believes in her. Believe in her. Provide the same opportunities to her as you do for your other students. She is competent. Raise the bar. She may not always be able to reach it, but let her know you believe she will one day.

3. Make sure she’s welcomed.

Before she joins your class, take time to explain to your other students why everyone deserves a spot in class and why everyone deserves to feel like they’re wanted and belong. Here’s a list of books you can even share with them to explain disabilities. Encourage them to reach out and try to engage my child. Too often kids like mine are sent the message that they don’t count and don’t belong. Drive home that every student belongs. Let them know your classroom is a place where everyone is treated the same, which brings me to my next point…

4. Inclusion benefits everyone.

It provides your typical kids the opportunity to meet, engage and befriend someone different from them. It fosters independence, pride and compassion. Find those compassionate kids and encourage them to sit with my child at lunch, play with her on the playground and maybe even spend time with her after school. Friendships don’t come easily to my daughter. I’ll depend on you to let me know if there are students I can reach out to for weekend playdates. Inclusion can be a real-life anti-bullying campaign.

5. Communicate honestly with me.

When we meet and discuss her progress, tell me how she’s really doing in your class. Please don’t patronize me by saying, “She’s doing great!” if the subtext is “for a child with special needs.” I rely on you to help shape her educational experience and to help me decide which environments she will thrive best in and where to place her in the future.

6. Expect to fall in love.

If you embrace being a part of my child’s team, you’ll never want out! Once my child touches your heart — and she will most definitely touch your heart — you’ll probably become an advocate for her and for other students like her. You’ll feel overwhelming joy when she understands lessons that once seemed too tough and meets milestones that once seemed too far reaching. You might just remember why you became a teacher in the first place and find a renewal of energy and spirit. Yes, just one student can make that much of a difference in the life of a teacher — and one teacher can make that much of a difference in the life of a child like mine.

Dani Gillman the mighty.1-001

A version of this post originally appeared on Birdhouse for Autism.

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To the Young Lady Who Used the R-Word to Describe My Son With Asperger’s

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One day, my son Aaron’s manager at the grocery store was speaking with a young lady. The young lady was talking to the manager about getting a job there. The young lady became upset when the manager informed her there were no openings at that particular store. In her anger, she yelled out as Aaron was walking by, “You can hire retarded folks like him [pointing to Aaron], but you can’t hire me?” Aaron’s manager then told the young lady her comments were inappropriate and asked her to leave the store.

This is my response to that young lady.

To the young lady who used the R-word to refer to my son in her rant while he was working:

There are six things I wish you knew about my son, Aaron:

1. Aaron has successfully worked with others since he was a young boy.

He helped my father deliver newspapers in eastern North Carolina and southeastern Virginia. He did not just deliver the papers to customers; he had to follow multiple-step directions in order to fulfill each order correctly.

He also had to interact with my father’s customers. He came to be known as “Mr. Holley’s little helper” because he was just 7 and 8 at the time.

2. While in high school, he worked, went to school and played sports in the fall, winter and spring.

Again, he had to follow multiple-step directions in order to complete his job duties, something that can be difficult for those on the spectrum. However, because he was taught by his parents to work hard and always ask questions until he had a clear understanding of how to complete his assignment, he was praised by his co-workers and supervisors for his strong work ethic and attention to detail. Others he encountered while working praised his politeness and willingness to help others.

3. This same young man just completed his first year of college.

That experience was not without its difficulties, but Aaron persevered. He did not shy away from the challenges and was able to finish with a great GPA. He recently started his second year of school and is still determined to make a life for himself.

4. Aaron is a helpful and humble person.

During his senior year of high school, I asked him what he thought his position or job was on his football team. He responded without a beat, “My job is to help my teammates whenever they need me. If they get tired, I can take their place on the field until they have had enough rest.”

Most athletes might want to have all the playing time during their senior year. But Aaron assured us he was fine “helping out.”

5. Aaron is a great encourager.

Even though he has had periods of loneliness and bullying, he has not allowed that to scar him emotionally. Instead, he makes sure those who have been victimized by others feel loved, accepted and wanted. He often shares encouraging posts on Facebook. He’s shared how his friends find comfort in those posts.

6. The most important thing I want you to know is that Aaron is loved by many people.

Your comment, once it became known to others, was quite upsetting. You see, early on, my family and I prayed. We prayed for God to place angels in Aaron’s life to help him along the way. I believe God has not disappointed us.

Aaron has angels everywhere. It would be wise of you to watch your words; you never know who may be listening and who may be negatively affected by your words.

Why did I share six things instead of the usual five or 10? Because Aaron has always followed his own path. He has never allowed what others thought of him to keep him from doing what he knows is right to do.

This list is dedicated to my oldest, my Aspie, my Aaron. Keep blazing your own path, son!

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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