I Still Dream Big: Stories of Teens Living with Chronic Illness - Softcover

Penny B. Wolf, MSW

Softcover

ISBN 10: 1449030963 ISBN 13: 9781449030964

Publisher: AuthorHouse, 2009

Synopsis

Kelly was a seventeen-year-old star of her high school basketball team . . . Gevon was a twelve-year-old who played linebacker for his middle school football team . . . Crystle was a nineteen-year-old college student with big plans for the future . . . One day you're hanging out with friends at the mall, playing basketball at school, dreaming about your latest crush, and the next you're in the hospital hooked up to tubes and wondering whether or not you'll ever feel normal again. Getting sick was never part of the plan. Lupus. Diabetes. Rheumatoid Arthritis. Crohn's. Multiple Sclerosis. No matter what the diagnosis, teens with chronic illnesses share one thing in common: their lives have been changed forever by illness. Seventeen young adults share their personal stories in I Still Dream Big. Their tenacity and spirit are an inspiration to us all. The voices of the teens profiled in this book are filled with hope and optimism despite the very real challenges they face. While some of their goals may have changed, these kids still have high hopes and big dreams for the future. Above all, they refuse to be defined by illness. Seventeen-year-old history buff, Jamie, sums it up with these words, "You define yourself, not something written in a medical chart". When someone gets sick, family and friends are affected as well. The stories of these seventeen teens are important, not only for teens with chronic illness, but for the people who love them and want so much to understand the emotional and physical challenges their best friends and loved ones face. I Still Dream Big is a celebration of life and a reminder to all of us to hold onto our own dreams for the future-and to remember to DREAM BIG.

About this title

Excerpt. © Reprinted by permission. All rights reserved.

I Still Dream Big

Stories of Teens Living with Chronic IllnessBy Penny B. Wolf

AuthorHouse

Copyright © 2009 Penny B. Wolf
All right reserved.
ISBN: 978-1-4490-3096-4

Contents

i. Introduction............................................xiiiii. Cast of Characters.....................................xviii. Chronic Illness.......................................xix1. Why Me?.................................................12. Being Different.........................................133. Needles and Pills and Pumps, Oh My!.....................234. Independence Delayed....................................335. BFFs....................................................436. What About Dating?......................................537. The Monster under the Bed...............................618. Talking to Your Doctor..................................699. Ways We Cope............................................7710. Talking to Schools and Employers.......................8711. Dreams Deferred and Silver Linings.....................9712. Words of Advice: Teen to Teen..........................110Appendix: Where to Turn for Help...........................119

Chapter One

Why Me?

Being Diagnosed

I didn't cry or anything. I guess I was kind of in shock ... I was trying to figure out what I did to make this happen. -Crystle

Why Me:

Being Diagnosed

Kelly was a seventeen-year-old star of her high school basketball team ...

Gevon was a twelve-year-old who played linebacker for his middle-school football team ...

Crystle was a nineteen-year-old college student with big plans for the future ...

One day you're hanging out with friends at the mall, playing basketball at school, dreaming about your latest crush, and the next you're in the hospital hooked up to tubes and wondering whether or not you'll ever feel normal again. Getting sick is never part of the plan.

I knew something was wrong ...

GEVON

Gevon was in football practice when he first realized he was sick. A twelve-year-old linebacker for his junior-high team, he was big and strong, but he knew something just wasn't right. "I felt very tired and my mouth was really dry," he remembers. "I just felt really sick." The school called his mother, who immediately took him to the doctor. After an initial misdiagnosis of a stomach virus, Gevon finally was diagnosed with type 1 diabetes. Stories of Teens Living with Chronic Illness "By the time I was diagnosed, I was DKA and barely conscious, and I was hospitalized for about a week," he recalls. DKA-the abbreviation for diabetic ketoacidosis, a life-threatening diabetes complication-tumbles off Gevon's tongue with a nonchalance that only others with a chronic illness can understand. You come to learn the lingo of your illness really fast.

Gevon doesn't remember much of the first few days he was hospitalized, as he was in and out of consciousness. But he does remember when he was told he had diabetes. "Nobody believes that I didn't get really emotional, but I didn't. My mom has diabetes, and my grandmother had it. A lot of people in my family have diabetes, so I already knew a lot about it," he says. "They tell me most kids get depressed, but I never did. The hard thing for me was giving up the Cokes and candy," he says with an infectious laugh.

Gevon's mother works for the American Diabetes Association, and her knowledge has helped him learn to cope. He says his friends have also helped. "I hid it from my friends at first," he admits. Gradually he started telling friends and girlfriends, and he was surprised to find that "they were okay with it. If they get a Coke, I get a Diet Coke. My friends kind of keep me away from the bad stuff-keep me in line."

It's kind of scary ...

CHELSEA

Chelsea was diagnosed with Crohn's disease, a disease that attacks the digestive tract, when she was just eleven years old. Now seventeen, she recalls that when she first learned she was sick, she was pretty laid-back about it. "I just kind of blew if off; like, okay, whatever," she says. "But then I started realizing that there aren't a lot of people with this condition, and I'm going to have this for the rest of my life. The more I learned, the more I realized how uncontrollable it can be. It's kind of scary." Chelsea admits that she still can get pretty upset about having Crohn's. "It can hit at any time, and I don't know when," she says. "I still get scared about it a lot. Most teens think they're invincible and they're not. I had to learn that early."

I wish they would just figure it out ...

MINDY

The first sign Mindy had that something was wrong was when she suddenly lost all of her vision in both eyes. "I was at my dad's house, and he asked me to turn on the light, and I couldn't see the light switch," she says. "I was thinking 'What light switch? I don't see anything.'" At the time, Mindy was fifteen and had just been released from the hospital after a bout with meningitis. "I was scared, but I didn't say anything because I didn't want to go back to the hospital," she says. "I just sat there on the couch, not telling anyone."

Of course, once she did say something, Mindy's parents immediately took her back to the hospital and, with treatment, she gradually began to regain her eye-sight. It took a few months before the doctors diagnosed Mindy with optic neuritis, an eye condition that often goes along with multiple sclerosis. One of Mindy's biggest frustrations is that even now, three years later, the doctors are not certain about her diagnosis. As with many chronic illnesses, her condition mimics a couple of illnesses, and the doctors have not yet made a definitive diagnosis. "I wish they would just figure out what it is," she says. "I'm really tired of not knowing."

At first I cried ...

KELLY

Kelly was seventeen when she was diagnosed with rheumatoid arthritis. Like Gevon, she was an athlete-a star on her high-school basketball team, in fact. "I woke up one morning and my legs were hurting so bad that I couldn't move," she recalls. "I just started screaming for my mom." Her mother took her to the doctor that day, but it would be several months before she was finally diagnosed with a severe form of rheumatoid arthritis (RA). Kelly says that in the beginning, no one believed she was really sick. "I had just been made captain of my basketball team," she explains. "Everyone thought I felt sick because I was just scared of the responsibility."

When she first learned of her diagnosis, "I just cried," Kelly recalls. "I had to be home-schooled. I couldn't play basketball-and basketball was my life. I didn't want my best friend to see me because my face was so fat from the prednisone and I was embarrassed." Now almost twenty-one years old, Kelly is in community college and working toward a transfer to a four-year university, where she plans to earn a degree in social work. RA continues to wreak havoc on Kelly's body, and she is still working at coming to terms with the fact that she will not likely be able to play competitive sports again.

I was confused ...

JOELL

Joell was eleven when he was diagnosed with a severe form of lupus that required chemotherapy. Now fifteen, he explains that when he was first diagnosed, "I felt confused. I didn't really know what lupus was or what was going on." All he knew was that he was in the hospital and really sick. Even when the doctors explained his condition to him, he acknowledges that his strongest emotion was confusion. Over the next few months, as his cheeks swelled from the drug prednisone, "I was pretty much mad," he says. "My cheeks just kept getting bigger and I was embarrassed about how I looked." Prednisone, an anti-inflammatory medication used at times to treat many autoimmune illnesses, including lupus and rheumatoid arthritis, sometimes has side effects of weight gain and facial swelling. For many teens (and adults) like Joell, these physical changes can be upsetting.

Joell has participated in a support group for teens with lupus and notes that the group helped him feel more confident. One of Joell's teachers has a mother with lupus, and her support and understanding have also been very important to him. Like Gevon, Joell says that "my friends look out for me, trying to make sure I don't do things that make me sick."

I felt angry ...

CRYSTLE

When Crystle first learned she had lupus, she was nineteen, a college student studying health and fitness and planning a career as a fitness instructor. She loved to cheerlead and was a workout fanatic. The diagnosis hit her hard. "Actually, I had read about lupus before, so I knew it could be life-threatening," she says. "But I had convinced myself I didn't have it. When they told me I did, I was just kind of blank. I didn't cry or anything. I guess I was kind of in shock." Once she got over the shock, Crystle remembers feeling angry. "I felt like, aren't there worse people in the world who could get this?" she remembers. "I was trying to figure out what I had done to make this happen. Was there something I did too much of? I just didn't know. I thought maybe I had stressed too much about school, running all the time, not getting enough vitamins ... I was just so confused." She admits that she still gets angry about it sometimes, especially when she is in a lot of pain. "I still get jealous of others who can do whatever they want," she says. "But the feelings are not as intense as they were."

LINDSAY

Lindsay shares Crystle's sense of frustration and anger. Having had diabetes since the age of four, she was used to dealing with that condition. But then, in her senior year of high school, Lindsay was blindsided with a diagnosis of a second illness, Hashimoto's disease, a condition that affects the thyroid and causes significant fatigue. The second diagnosis really threw Lindsay for a loop. "I've had to miss so much school-it's like every night before I go to bed, I think I'll wake up and go to school, and then I wake up and I can't move," she explains. "With the diabetes, at first it's hard to get under control, but now that I've had it almost fourteen years, it's stable. I just feel like someone said, 'Let's shut your thyroid down just for the heck of it.' Sometimes I just feel this is ridiculous." Lindsay says she never really complained about the diabetes, because she's had it most of her life and it's all she's ever known. The Hashimoto's is a whole new experience for her, and it's one for which she wasn't prepared "It really ticks me off," she says.

I wanted to take control ...

TESCH

Tesch was diagnosed with diabetes at age ten. "My mom noticed that I had lost weight and was lethargic and drinking a lot of water," she says. "I was always tired and all I wanted to do was sleep." She remembers that when they went to the emergency room, "they wouldn't let me eat because my blood sugar was so high. I hadn't eaten all day, and I was so hungry and tired ... I just started crying." On her second night in the hospital, Tesch turned to her mom and asked, "Why me?" It's a question most of us ask at some point after being diagnosed with a serious illness. "My mom started crying," she recalls.

From the start, Tesch says, she wanted to take control-even at just ten years old and afraid of needles, she wouldn't let anyone else administer her shots or test her blood sugar. "I'm kind of a control freak," she laughs. Now sixteen and an advocate for others with diabetes, Tesch says she believes that her desire to take control helps her cope. But she's also had to learn that with her illness, there are times when she doesn't have total control, and she's realized how important the support of her family is at those times. "I've had to learn to accept help," she says.

Why me?

Everyone's initial reaction to a diagnosis of a chronic illness is a little different. But if we're honest, "Why me?" is a question we've all asked at some point. Most of us will ask it more than once, whenever things are on the down-swing, or the illness is in a flare, or medications don't seem to be working. Of course, the rational response to this question is, "Why not me?" But emotions are not rational. And the knowledge that life is not fair doesn't help a lot on those days when you're in "pity party" mode and all you want to do is scream, "It isn't fair!"

Fair or not, a diagnosis of a chronic illness can change your life dramatically. But as you will learn in later chapters, most of the teens in this book have found that while some of their plans for the future may have changed, life does go on. And, as one girl put it, it helps a lot to focus on what you can do rather than on what you can't.

Chapter Two

Being Different

Everyone has something that makes them a little different. -Rachel

Being Different

Brand-name sneakers, designer jeans, the same slang ... for better or worse, the teen years are not a time when most of us choose to stand out from the crowd. True, some teens do try to be different. But being different because of illness is not a choice; it is something that is thrust upon you. Changes in appearance, energy level, and lifestyle are just some of the ways that chronic illness can make you unlike others your age. Learning to cope with these differences can be one of the biggest challenges you will face.

Looking different ...

CHELSEA

"It's really hard, because all you want to do is fit in and have friends," says Chelsea, who was diagnosed with Crohn's disease at the age of eleven. A self-described "band geek," Chelsea says that illness compounded her sense of being somewhat of an outsider. As Crohn's attacks the digestive tract and can cause severe weight loss, Chelsea also struggled with kids who made fun of her for what they believed was anorexia. "People make fun of you out of ignorance and because they are uncomfortable," she says. "The cruelty comes from their ignorance." Understanding this helped Chelsea cope with these issues, but it still wasn't easy.

Now eighteen and a college student, Chelsea is pleased that she has learned that being like everyone else is not, as she says, "all it's cracked up to be. I accept myself, and that's what's important," says Chelsea. "It's very liberating when you realize you don't have to be like everyone else."

ALYSSA

Alyssa agrees that learning to accept our differences "can be very empowering." Diagnosed with diabetes at age six, she says that middle school was the hardest time for her. Like Crohn's, type 1 diabetes can cause weight loss, and Alyssa's peers also teased her for being too thin.

"Everyone wants to be in that popular group, those five popular girls," says Alyssa. "It's not just about the coolest outfits or the straightest hair. With an illness, you have that heightened sense that something stands out about you." Regular visits to the nurse's office, having to wear an insulin pump, and missing school due to illness were all things that made it hard for Alyssa to feel like one of the crowd.

"In seventh grade, there was a boy who said 'There goes the vampire' every time I had to go to the nurse to get my insulin checked," she remembers. "I felt very alienated." For Alyssa, things got better when she made the decision to go to a charter high school, with all new kids and a fresh start. By that time, she was also able to check her own insulin levels, which freed her up from regular visits to the nurse's office.

"My high school embraced diversity," she recalls. In a supportive environment, Alyssa became comfortable with explaining to people that she had diabetes when the subject came up. In fact, in high school Alyssa's diabetes became a subject of interest rather than ridicule among her fellow students. Looking back now, as an eighteen-year-old college student, Alyssa says, "It's all made me stronger as a person."

MIRANDA

Weight loss caused by diabetes and Crohn's made Alyssa and Chelsea look different from others their age. But chronic illnesses can also cause weight gain, hair loss, skin lesions, and other changes in appearance. Miranda, who was diagnosed with lupus at the age of eleven, developed skin lesions that altered her appearance. "Growing up as a young girl and then in my teenage years, of course it was difficult," she says. "I wanted to look like everybody else, and I didn't want to stand out in a negative way. During those times, I felt like I didn't completely fit in." Miranda credits the support of her brothers and sisters for helping her make it through those difficult years.

But it wasn't until she joined a teen support group when she was eighteen that Miranda first met other teens with lupus. "It was so amazing to be with kids who were like me, who understood what I was going through," she says. Now a lovely young woman and recent college grad, Miranda says she's learned that "true beauty comes from within."

"If people did not want to be my friend just because of the way I looked, then they weren't worth being friends with in the first place," she says. "I know that I am a nice, caring person and that the beauty I have on the inside manifests itself on the outside."

(Continues...)

Excerpted from I Still Dream Bigby Penny B. Wolf Copyright © 2009 by Penny B. Wolf. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Edition details

• Publisher: AuthorHouse
• Publication date: 2009
• Language: English
• ISBN 10: 1449030963
• ISBN 13: 9781449030964
• Binding: Paperback
• Number of pages: 160