Why, No Matter What, I'm Not My Chronic Illness' Victim

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Dear Dysautonomia,

Some of my friends have pet names for you. But I’ve never wanted to do that. Calling you something cute might give you the idea that I’d like us to be friends. I wouldn’t. I’d like us to be strangers.

I’ve had weaknesses in an area of my nervous system since I was a kid. And that was OK — just something about me I learned to make adjustments for. Those little quirks of my system — the fainting, the tummy aching, the tiredness — those things were just something to accept, like my lack of natural talent on the sports field. I had other strengths.

Then you arrived with full force. You came in through a window left open by a nasty virus. You turned my already wobbly autonomic nervous system against itself. You set up shop in my immune system and began to wreak your havoc. First, you had a go at my heart. They put in a pacemaker to limit your influence. Then, my vision, my digestion, my ability to go to the toilet. They gave me pills and potions, enemas and catheters. For every trick you pulled, we tried counter-maneuvers. Few of them were effective. You made it hard for me to regulate my temperature and threw in some dizziness every time I moved into an upright position. You drowned my days in bone sapping fatigue. You shifted my career well out of my reach. I felt so purposeless.

There were times when I even felt like you’d taken the best years of my life. A new marriage, the motherhood I’d longed for. These gifts were tarnished because I couldn’t be the wife and mother I yearned to be. I was angry with you for that. On behalf of the beautiful people I call my own, too. I was so angry about the freedom I’d lost to you, they’d lost to you.

I hoped. For six years, living with you, attached to my every move, part of my thought process. I hoped.  Someone will discover something, I thought. Medical advancements are happening all the time. Maybe they will identify something important in their minuscule research studies. And they are. Little by little the scientific community is inching its way towards something. I found a keynote presentation by a neurologist in the U.S. A man who’s studied autonomic ganglia for years. It flicked a switch in my brain, and I began to see.  There might be a way to finally let you know, Dysautonomia. You’re not welcome here.

And now, I’m on a promising pathway; I’m getting the movers in. I just wanted to write you a little letter as we approach your eviction. Like a victim impact statement. All those things above, they’re painful facts about why I don’t like what you’ve done to me. But there are other facts too. Surprising gifts you’ve given, even as you’ve be rampaging through my life.

You taught me I could find things out. Figure things out. Things way beyond my artsy brain. You led me to patient groups where I’ve found some of my staunchest friends. And you forced me to rearrange my interior self. To consider who I am and what I want to be remembered for. To identify the things that really matter.  To let the people I love know how I feel. And you gave me back a gift I’d dropped a long time ago. You made me write again.

I don’t know why it takes hardships to gain insight. But it does. Being sick with a chronic illness, dealing with you, Dysautonomia, seems like too harsh a price to pay, but I would pay it all over again. To learn what I’ve learned, to become who I am becoming. I would like to tell you that although I don’t like you, didn’t want you in my life and would dearly love to see you go, I’m grateful to you. You’re my shortcut to wiser living. A portal into a new and better me. 

Thanks for that.

I also want you to know, that even if I can’t eradicate you from my life, I will always be, 

your ex-victim,

Rach 

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

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To Each Illness I've Had to Fight, This Is What You've Taught Me

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Dear Illnesses,

Enthesitis– You are my oldest constant companion. For years no doctor could find you and yet I was well aware of your presence. At age 10 you started to attack me, stripping me of my active lifestyle. But, for all you took away from me you have given me just as much if not more.

You taught me how to fight and that doctors do not always know best. You taught me perseverance from a young age. Without you I don’t think I would be able to handle my other health issues. Thank you for preparing me for the world. I wish you waited a little longer to show up but I am glad you came.

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Uveitis– You took me by surprise, possibly the only condition to accomplish that. I will never forget the day you were found in my left eye. I was scared and not sure what lie ahead. I still have a fear of eye drops and all things near my eye thanks to you. You taught me sometimes I have to do things I hate but that’s just the way it is.

AMPS/RSD– You were the first to affect my nervous system– foreshadowing my future. You taught me to work hard even when the goal seemed unachievable. I learned about persistence the hard way thanks to you. The lesson, slow and steady wins the race, became my motto to defeat you.

Celiac– Your timing was just about as bad as it could have been. The week before finals my first semester of college. You taught me how to make my voice heard, how to stand up for myself. You made me outspoken and helped me to let people know what I need. You taught me to be creative and how to make a gourmet meal in a microwave.

Gastroparesis– I do not even know what to say to you. You have taken away one of the most basic joys in my life. I have had to adjust myself to you and your needs. Controlling does not even begin to describe you. Yet you have taught me to enjoy the little things in life. I no longer take being able to enjoy a small piece of chocolate for granted.

POTS/Dysautonomia– We are still getting to know each other. At least you had the decency to first show your affects on me in front of every single doctor on the GI wing– a double edge sword. You are a tricky one, most doctors do not know what to make of you. You have taught me how integral planning is, how the smallest mistake can take a week to fix. On the bright side you have given me an hour of relaxation once a week during my infusions.

As a group you guys have tested me and put me through the ringer. Yet the struggle has made me stronger. I am now equipped with confidence and integrity. When I look back on all I have faced and the battles I have fought I know I can push forward. For that I thank you.

Sincerely,

Joan

A version of this post originally appeared on Life with a Flare.

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Why the ‘R’ Word Is Not ‘Just a Word’

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Every year, I try to create a post highlighting why I feel it’s important to support and practice the “Spread The Word To End The Word” movement. In an attempt to sum up just how I feel, I’m going to redeliver last year’s post with a few changes. We live in a society where having an opinion is often an automatic right to discount the opinions and feelings of others and, essentially, where compassion is lost in a cloud of arrogance.

Let this not be a lecture. Let this be a simple message.

I wrote this post in the hospital last year while my daughter, Tessa, was finishing her last round of chemotherapy for what I hoped would be for the rest of her life. I remember a fire igniting in me when I realized that in addition to fighting for her life, she was also fighting for respect in everyday life outside of cancer.

There are many words I can use to describe Tessa’s journey to today. “Retarded” is not one of those words. And it never will be.

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On March 4, 2015, I stand united with thousands of others and encourage people everywhere to hear our voices. We ask for this pledge to be signed, understood and practiced — not just today but every day.

I’m talking about the movement ending the use of the r-word. “Retard.” “Retarded.” It is more than a word. It’s a classification labeling people who don’t deserve the label. It’s a word that minimizes the vast accomplishments my daughter and others make each and every day.

I’m not stripping anyone of their first amendment rights (yes, I’ve heard that one before). I’m challenging people to be better for others and for themselves.

Why? Because we need a reminder to be considerate, compassionate and polite. It might not mean anything to some people, but to many others, like me, it does.

This world places limits on people with intellectual disabilities and challenges them to rise above. But those who place the limits fail to stick around for the good part. Not only do these people rise above, they soar far above the expectations. They conform to the standards of everyday life. They persevere. They do it all, but the word still exists. It’s still used. It’s still hurtful.

Tessa is more than the word used to reduce her. She deserves better.

Everyone does.

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I’m not over-sensitive. I’m a mom of a child with special needs. I’m a mom of typical children. I’m a human being asking for a shred of decency and respect. Please spare me the speech about the r-word implying nothing about people with differing abilities, because it absolutely does. Preaching that we are over-sensitive is a bad excuse for poor behavior when it’s so easy to be better.

So if it is just a word, then please pick a different word. A better word.

Sign the pledge. Remember it. Pass it on.

*Steps down from soap box.*

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Visit http://www.r-word.org to learn more.

This post originally appeared on Dear Tessa.

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To the Mom Who Asked Why a Down Syndrome Diagnosis Is a Great Thing

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I read a question today another mom posted. She recently gave birth to a child with Down syndrome. She said she’s constantly told her life will change forever and how great it’s going to be from now on. She wonders why. She holds so much fear of the unknown and is genuinely interested in why it’s so great and what changes she can expect.

Yes, it’s scary. The unknown terrifies us too. It was scary when we were told of our daughter, Millie’s diagnosis, and it still is just as scary today. Every time I see a suspicious-looking dot on Millie’s body, I wonder whether it is the first visible sign of leukaemia. When she stares off into space, daydreaming, I wonder if she’s having an absence seizure and will be subsequently diagnosed with epilepsy. When she does splits, I wonder whether she’ll need orthopedic surgery when she gets older, due to joint deterioration. When she sneezes, I wonder whether it’s going to result in a hospital admission later in the week after developing pneumonia. These may seem to you like irrational fears, but they’re a few of the many things that are more likely to happen to a child with Down syndrome.

How has that changed my life? I didn’t have those worries about my kids’ health before Millie was born, and didn’t need to take such drastic measures to protect them. But with Millie, we’ll miss a big event because of a sneeze. It means her immunity is probably lower than usual, and I don’t want her around others with any minor illness that could land her in hospital. I’m sure there’s plenty of people who don’t bother inviting us out anymore, given the number of times we thought it best that we shouldn’t go somewhere or cancelled at the last minute. The doctor appointment I’ve forgotten about may mean I need to ask my best friend to reschedule our catch-up. Three extra appointments this week means I’m behind in my work, and if I miss deadlines, I could lose a client. Spur of the moment arrangements are almost impossible, and the extra precautions we take mean we often miss out on things we’ve been looking forward to.

It’s heartbreaking to watch a little 1-year-old boy run up to the playground equipment, as I watch Millie straggle behind doing her crab crawl, stopping to pick off the pieces of wood chips stabbing into her hands. She tries to keep up with the little boy, who’s half her age, and she watches him do it so effortlessly.

Having said that, almost every time I walk past a new mom in the street and peek into the pram at a gorgeous, sleeping newborn baby, I hope to see a little baby with epicanthal folds in his or her eyes that have an upward slant. I hope to see a tiny (or non-existent) nasal bone and a little tongue poking out due to low muscle tone. Why do I wish those life-changing worries and inconveniences on somebody else? It’s because the good stuff far outweighs the bad stuff.

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My daughter has taught me to be patient. I’ve deleted the milestone charts from my computer because they don’t matter anymore. There’s no competition. There’s no pressure. Milestones will be reached when they’re reached, and we’ll have fun helping her along.

And the little things, too. There were cheers of praise last week when Millie recently learned to drink from a straw. She also blew into the recorder by herself for the first time — three months after her first unsuccessful attempt. She’s almost mastered the trike she’s been trying to ride almost daily for the past six months. She’s been trying to stand independently for about eight months now, and every day she’ll stand for a second longer than she did the day before. I know that soon, whether it be next week or six months from now, she’ll walk towards me to wrap her little arms around my neck for a cuddle, instead of standing there, putting in 120 percent effort to hold her balance for longer than she did yesterday.

We’re celebrating progress and achievements every single day in our house, and watching her work hard to do what she wants to do makes the whole family proud of her. It’s all worth the wait, and it feels a little bit more special when she finally achieves what she’s been trying hard to do.

She’s recently started daycare. I watch the other children who are the same age as her interact with her. “Is Millie a baby?” “No, Millie’s not a baby. She’s 2 and a half, just like you. And will be able to do what you do, but she might need some extra help, and it might take a little longer to do it on her own.” Millie is constantly teaching other children her age about inclusion and acceptance, and the positive attitude of the carers is all helping shape the thinking of these children as they become teenagers and then adults. I’ll make sure their experience being around Millie is a positive one, and step by step Millie can help change any negative perceptions of the world, just by being Millie.

On the rare occasions when you pass another parent in the street who also has a child with Down syndrome, more often than not it’s like meeting up with a long lost friend, and you’ll find yourself standing and chatting for an hour. It’s like a secret society, and if you know the secret handshake, you understand.

When Millie learned to put a spoon to her mouth and actually put food in, we celebrated like she’d just climbed Kosciusko. I can’t remember such a fuss over these simple achievements with my typically developing boys, and friends with typically developing kids probably don’t quite understand our excitement. We’ve all learned to become moms and dads, brothers and sisters, best friends, therapists, counselors, nutritionists, advocates and fighters, all thanks to our precious little people with Down syndrome.

I’ve watched my boys, with their tolerance and patience, develop into understanding young men, more so than I ever thought they would. I see their concerns when Millie is unwell and their genuine excitement when she learns something new. They’re little teachers, they’re little therapists and they’re little advocates who are willing to do whatever they can to make sure Millie is happy because it makes them happy too.

So yes, I do feel a twinge of disappointment when that baby in the pram doesn’t have those features of Down syndrome I’m hoping to see. It’s because I want every parent to be able to experience what we’re experiencing. I want to open up our world and bring you all inside and see how delightful life can be, despite the challenges and frustrations of raising a beautiful little person with an extra chromosome.

The difficult stuff will change you for the better. The friends you’ll meet will share every ounce of excitement over those tiny little wins. The five minutes of worry over that spot you’re convinced is due to leukemia will quickly be overrode by the sound of a recorder being blown in your ear and celebrated for the next hour or more. And as you sit home and dwell about missing your best friend’s birthday dinner for the second year running because your child has a cold, you’ll be interrupted by your snuffly toddler on the scooter running over your foot and cry tears of joy that it happened.

So to the parent who asked that question about why we say it’s so great and in what way will it change your life — that’s why. And, before long, you too will hope that the parents of the little newborn you’re admiring in the pram is going to be one of us who has had their life changed, just like yours was.

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Follow this journey on Little Miss Millie – Watch her grow.

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The Sweet Reason Adam Levine and Maroon 5 Got Down on the Floor With This Boy

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Christopher Warner, a 10-year-old Maroon 5 super fan with Down syndrome from Howard County, Maryland, just had his dreams come true.

Last week Christopher’s teachers helped him make a YouTube video about his love of the band in the hopes of getting him the chance to meet them. Soon, local radio station Hot 99.5 got involved and landed Christopher the chance of a lifetime — to attend a Maroon 5 concert and meet the band afterwards, My Fox DC reported.

However, after the concert when it finally came time to meet his idol, frontman Adam Levine, Christopher become so excited and overwhelmed that he had a little panic attack. To help him calm down and feel more relaxed, Levine suggested they all lie down.

Christopher, his mother, an intern from the radio station and the entire band all got down together to take a breather, and the incredibly sweet moment was caught on camera.

Adam Levine and Maroon 5 band lying on the floor with Christopher

The band autographed some pictures Christopher had drawn of them in addition to giving him CDs, posters, drumsticks and shirts.

Watch the video below for the full story:

DC News FOX 5 DC WTTG
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The Moment My Son Showed Me His Sister Will Be OK, Even After I'm Gone

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I’d consider myself to be a pretty easygoing, roll-with-the-punches kinda momma. But two things in particular just about do my head in: Potty training (for obvious reasons) and getting children out the door (especially in the winter). I’m always running late — I mean always — so the added nonsense of boots, coats, hats and mitts times two just about makes me wanna hibernate and call it a day.

Take this morning — my one day when both hooligans are at daycare and I get to actually work. Pip went up and down the stairs about 13 times, Noal refused to put his boots on the right feet, Pip didn’t want to wear mitts, and Noal kept distracting the whole process by singing to her, which she loved.

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And right before I was about to get all outta sorts, they took me down a notch, like they always do, and showed me really what matters…

“Look, Momma, I can even kiss Pippy through the stairs.”

They kept kissing, Pip laughing each and every time, and Noal beaming proudly because he made his girls happy.

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You’d think that would be enough of an emotional hug today, but oh no. Fate was not finished. Walking into daycare, Pip was a bit slower and having a hard time on the snow, so Noal kept pushing her along and holding her hand.

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And in that moment when I took this sweet, sweet pic, it was as if this was them, 50 years from now. It was as if this was a glimpse of my sweet boy taking care of his sister, when my husband and I are gone. It was as if fate once again was showing me they have each other and everything will be OK.

P.S. Noal is the King of Time-Outs in our household, but Pippy always has to go sit beside him to make sure he’s OK.

This post originally appeared on Happy Soul Project.

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