I’m a huge Crystal Bowersox fan. Personally, I think this husky-voiced “busker” should have won this year’s American Idol competition, but it’s still freakin’ amazing to take 2nd place in this larger-than-life national competition.
Those of you who follow entertainment news (or this blog) know by now that Crystal is “one of us” — a person with diabetes (PWD). She’s a type 1 and insulin pumper, currently using her new-found fame to help fellow PWDs.
I can’t tell you how excited I was to have the opportunity for a phone interview with my music idol Crystal last week. I found her exactly as down-to-earth and cool as she appears on TV.
So here it is — as far as I know, the first-ever interview with Crystal focused solely on her experience with diabetes:
“I threw a fit. I literally begged and pleaded, and I cried and said, ‘No way I’ve come this far to let diabetes stop me!’”
— Crystal Bowersox, on nearly getting kicked out of the 2010 American Idol competition
DM) Crystal, can you start by sharing your diagnosis story? Was your twin brother Carl also hit with the ‘betes?
CB) I was diagnosed at age 6. I was always really small, just 48 lbs in the 2nd grade, so one of the smallest kids in class. My brother was always towering over me. And no, he thankfully doesn’t have diabetes. He’s perfectly healthy.
At school I was taking too many bathroom breaks and snack breaks. I was actually punished for it. My mom went to the school to discuss it, and then realized something was wrong, so she took to me the doctor to test my blood sugar. I was admitted to the hospital for a week.
That must have been traumatic…
My 6-year old mind doesn’t remember it that way. I don’t remember feeling ill.
I do remember using that giant, honking OneTouch meter, plus we only had N and R insulins, and it was all injections — no fancy pumps or anything.
My mom was doing the shots for a little while, but pretty soon I got sick of that, and started doing them myself.
And how did you manage, growing up? Did you hide your diabetes?
The other kids always knew — like I’d have snacks in class, and I had to leave class to go to the office to check my blood sugar. They’d always say stuff like, ‘Why does she get to eat now and we don’t?’
I remember doing Show and Tell with my diabetes stuff in class. I was the only kid in the area who had diabetes at the time. Now I hear about so many more cases.
Was it tough on your siblings, with you being the center of attention?
My parents were pretty good about giving the same amount of attention to all three of us kids. For a while, the whole house tried to eat healthy, to support me. That lasted about a year, and then everyone went back to eating twinkies in front of me and stuff. But that’s OK. I don’t mind. {chuckles}
What was hardest for you and your family — emotionally? Or financially?
I actually started playing gigs and shows very early. I was a professional musician by about age 10. My dad was my roadie. He took me to most of the bars. I was playing four-hour shows, staying up late doing these gigs and then having to get up for early for school, so it was hard on my body.
But I was OK with it up until puberty. Then the hormones start kicking in and your sugars are all over the place — along with your moods and emotions.
I was hospitalized a lot during high school. Our home life was pretty chaotic, so that didn’t help. It was very stressful growing up. My parents divorced when I was 2.
My mom was a single mother with 3 kids — and trying to deal with one of them with diabetes. She became obsessive about it, constantly asking me about my sugar levels, wanting to know every detail. My mom’s mind was consumed by it. She was constantly worried about me. I didn’t get it when I was younger, but now I’m a mom myself; now I get it.
So your dad was your manager? Was he also the one who pushed you to go on the insulin pump?
I actually managed myself. I was this kid passing out business cards, trying to get my next gig lined up.
It was in high school when my doctor suggested the insulin pump, but it was something we couldn’t afford. We did benefits at bars where I played, and raised a couple-grand, so I could pay the portion of the pump not covered by our insurance.
I got the pump in 2003. I’ve only been hospitalized twice since then, and that was when things happened like my cat chewed through the insulin tubing one morning, and I woke up sick.
I’m on the MiniMed 723 Revel now, and it’s great. I had wanted to get on CGM for a long time, but I couldn’t afford the $60 for the sensors.
I read about how at some point you had to beg for insulin outside a pharmacy. You were totally without coverage or resources… ?
I moved to Chicago when I was 16, and (then after age 18), I still had to be a student full-time to get health coverage under my dad. But I had to work full-time too — that was hard on my body. After a while I gave up going to school, and then I was off the insurance and out of money. That should never happen to anyone.
Luckily I had some diabetic friends that I’d met at a camp in Dayton, Ohio, years earlier, and we re-connected. One of them helped me out with supplies and insulin.
My insurance had run out right before the Idol show… so I’d gotten onto to Medicaid. I had that high-risk pregnancy, and that wasn’t cheap.
Right, your son Tony is 16 months old now. Tell us about your diabetic pregnancy.
It wasn’t that bad, even though I was not in great control before. It was not a planned pregnancy. My sugars had been a little off — more than normal. Then I found out I was pregnant.
I got tons and tons of prenatal care. My insulin needs went up during pregnancy. I had no CGM then, so I was checking with fingersticks like every hour. I was checking maybe 10 to 20 times a day. I was really taking care of myself, and my A1C went from 9 down to 6.
I ended up having mild preeclampsia, so I was induced for labor. Then the baby’s heart beat went down, so they did a C-section. You have this birth plan and everything, and it all goes out the window!
Sounds pretty rough. Did you have the father there supporting you?
My son’s father left when I was six weeks pregnant. But I had a great support network of family and friends. Still, it was difficult getting through the whole thing alone. Some parts were really scary.
My son was born on Jan. 19, 2009. His blood sugar was low at birth. Because my sugars were high, he had extra insulin in his system.
They bottle-fed him right away. I was kind of disappointed because I wanted to breastfeed. But later I successfully breastfed him starting at two months — I did the breast pumping and all. So I’m a pumper of many kinds. {chuckles}
For the most part, it was a very successful pregnancy. I didn’t have many complications.
Speaking of complications, have you had any at all from diabetes?
They found a little retinopathy in my eyes during pregnancy, but it has not progressed. I also notice a little numbness in my feet. That’s why I want to tell kids how important it is to pay attention. When I was a kid, I’d think, ‘I don’t want to deal with this today.’ But you can’t do that! You can’t just put it aside. You can’t just take a ‘day off.’
Tell us about the American Idol experience. You went into DKA while the show was in full swing.
I was dealing a lot with wanting to be there, but not wanting to be there. I was away from my son, and a little depressed about that.
One day I woke up and I wasn’t feeling good. My sugars were in the 400s. I told the staff I didn’t feel well, and they took me to the hospital. I thought I’d just be treated real quick and be out of there, but they made me spend the night. My bicarbonate (ph levels) were so low, that they said on paper I really should have been in a coma.
Ken Warwick, the executive producer of the show, came into the hospital to see me, and he said, with his cute British accent, ‘I’m sorry darling. You’re off the show.’ I thought it was a joke! But he wasn’t laughing.
I threw a fit. I literally begged and pleaded, and I cried and said, ‘No way I’ve come this far to let diabetes stop me!’
I begged for a meeting with the Fox executives and show producers. They agreed I could stay only if they could hire a nurse to be with me 24/7. She would sleep in my room and everything. It was sort of post-traumatic stress back to the situation with my mom. But I agreed, and they switched the show date — the guys sang the night before the girls. Luckily, it was before the Top 12, so they could do that.
Wow. And you must have been feeling terrible.
DKA makes you feel really tired, thirsty, a lot of nausea, and your heart starts racing. Your chest is tight, you can’t breathe.
It was an awakening — a wake up call for me to say, ‘I can’t let this happen again.’ Not for my career, or for my son, or for all the kids out there who want to see that anything is possible with diabetes.
I decided would never let it happen again.
Is that the reason you got that type 1 diabetes gladfly tattoo on your arm?
I got that three weeks before the show was over. I’d thought about it for a long time. I personally don’t wear the medic ID jewelry, and I figure I’m diabetic for life. Now every time I look at my wrist, it’s a reminder to think, ‘How is my sugar? How am I doing?’
So it’s a reminder and it’s also awareness that you can do anything with diabetes.
You’re a fan of patient social networks, too. You were a member of TuDiabetes early on, right?
Yeah. TuDiabetes saved my ass once. I was driving to Chicago for the Idol auditions, and I forgot to pack infusion sets. I put up a post saying, ‘help please — I need infusion sets.’
A guy in Rockford, Illinois, responded saying he had a bunch that he was going to return to the company because he didn’t need them. So I packed the baby and drove to Rockford. The guy gave me two boxes of sets.
I sang him a song in his living room as a thank-you. And I said, ‘I’m going to be famous some day.’ I wonder what he’s thinking now. {chuckles}
Being able to network with other people can be so useful for situations like that! And also just being able to talk, to have buddies who know what you’re dealing with … the websites are great.
Please tell us about your advocacy efforts now. What exactly are you doing to help people struggling with diabetes?
I thought about starting my own foundation, but I now think it’s smarter and a more attainable goal to work with JDRF. I’ll be on Capitol Hill next summer for their Children’s Congress, for example. I’m also hoping to work with Elliott Yamin (another former Idol contestant with type 1). We met at the Idol Gives Back After Party, and we’ve started doing some stuff together. We want to make sure no one has to go without the supplies and meds they need.
I have been in the position of begging for insulin. I was 21, 22 — playing in subways all day. I had no insurance and that’s what it came to. No one should have to go through that.
My mom has type 2 diabetes, but for a long time she didn’t check her sugar or take the meds because she couldn’t afford the strips or pills. That’s just wrong.
Now I have Dr. Fran Kaufman as my endo. She’s a leading diabetes doctor, famous and great. We talk on the phone and use Carelink, and that’s how we stay in touch. I’m privileged to have her.
But good care shouldn’t be a privilege to the wealthy. I want to bring awareness to the need. That’s what I want to do with this thing we call ‘celebrity.’
***
Thank you, Crystal! As if your voice weren’t a gift enough. Best of luck with your new album this Spring. Maybe some of the profits could be directed you-know-where?
That was great! Thanks Amy.
Fantastic interview. Thank you Amy and Crystal!
Thank you for awesome interview .
Great stuff. Thanks Crystal. And to you Amy, for bringing this interview to us.
Thank you, Amy & Crystal! I’m a fan of both of you, now more than ever.
Thanks for sharing. Very inspirational story. She really has come a long way, and she’s right. Being diabetic and not having money or insurance to have access to proper treatment should never happen to anybody.
How on earth did you get to interview her???! Thank you so much for sharing her story, I loved reading it
She is awesome all around!
Great interview.
Excellent…
My 6 year old Type 1 aspires to be a singer and dancer in Hollywood when she grows up. It’s so great to see that it is not an unreasonable dream for her.
Thank you Crystal!
awesome interview!
[...] for supplies when she didn’t have health insurance, according to a new interview posted on DiabetesMine.com I have been in the position of begging for insulin. I was 21, 22 — playing in subways all day. I [...]
It always amazes me how brave children are with this illness. When you stop to think about being injected several times every day when most children make such a huge fuss at being injected just a couple of times in their lifetime. The sacrifices at childrens parties when they can’t have fizzy drinks, cookies and candy. They are a true inspiration to us all whatever our age!
Great interview.. Crystal, you are an inspiration. Can’t wait for your album to be released! My daughter, who has t1, loves to listen to you. She wants to be a singer too!
Great interview!! She is true and down to earth.
Not easy to live with Type 1. I’ve been at it for 40 years.
She has a great attitude which is so important to
have with this disease.
Keep going for it Crystal!!! <3
My sisters and I lost our baby sister to complications of Type I at the age of 37. She had neurapathy and was a mulitple amputee. Her life was hell those last years, made comfortable by only the love of her family and a fantastic Hospice worker. Yesterday would have been her birthday and we miss her every day. Thank you for sharing your experience so that others might improve their quality of life.
I think there’s a perception when it comes to diabetes care among some PWDs and too many doctors that money is no object, but the reality is that for some 3 million Americans living with diabetes, it is a very real object. An estimated 3 million Americans with diabetes have no healthcare insurance (and won’t until 2014 until major portion of healthcare reform go into effect) and for them, fancy gizmos like continuous glucose monitors are just a pipedream. I am so glad that Crystal can use her newfound “celebrity” as she calls it to bring attention to this too often overlooked reality that diabetes care costs a lot of money, and many individuals just don’t have access not because they are bad people, but because of the way our costly healthcare system works.
Wow, keep on moving forward girl. It’s always hard to face these challenges but we have to keep pushing on. It’s hard for me to find time for this each day with my hectic schedule in real estate industry. But you are an inspiration.
ajohnson
Great interview Amy!
Amy,
Great Interview, thanks so much for sharing.
Crystal,
You are awesome, your talent is unmatched and inspiring! I have a product that has been near a miracle for many folks with diabetes, including my best friend and his father, my mother, my uncle, and numerous others… please contact me…we can help millions
For people who live elsewhere, places that have universal health care insurance, that the US does not have adequate affordable health care delivery for its citizens is shocking. Those of us who watched the recent health insurance debate in your country listened with both bemusement and horror as some tried to depcit universal health insurance as the first step on the slippery slope to communism. How can this be the level of debate in such an otherwise sophisticated country?
Ensure all your citiznes have a right to primary health care.
I very much appreciate how she acknowledged how great resources should be available to everyone, not just the wealthy. And I would say that beyond anything we may want to help everyone get enough insulin considering without it we’re pretty screwed…
Amy,
Great Interview and thanks so much for sharing it with us. May god bless you.
Wow, keep up the good works. You have give me an inspiration to keep on moving. When things get tough only the tough get going.
Thanks for the interview, Ms Bowersox. You’re a great singer and a great person. My daughter has type I and I know that your story will inspire her to never give up.
Great Interview, thanks so much for sharing.
[...] Crystal Bowersox: Her First Interview on Diabetes [...]
Thank you so much Amy, for another wonderful blog. I was also diagnosed when I was 6. I wish I could meet Crystal and give her a big hug….but I would probably get arrested. Lol!
[...] Bowersox finally detailed how she ended up in the hospital during “Idol” with a diabetes website. She had ketoacidosis, caused by elevated high blood sugar levels. It’s often caused by a [...]
Your interview is truly amazing. A big thanks to you.
Thanks to everyone that made this interview possible! A verg big hug to Crystal for taking her time to make more people aware of just how difficult managing this illness can be. My son is 29 and was diagnosed at 14 months old. He is doing well thanks to the care that was made available to him. He’s been very lucky! So many do not have the good fortune to have had good health insurance to keep them well.
I could identify with a lot of what Crystal was saying as far as dealing with diabetes as a young child and adolescent coping with this illness. I do understand how scary it is for the mom of a diabetic child, too. Bless you Crystal for shining a light on the need for better care for all who are afflicted with this insidious disease! Good luck with your career, Crystal, and most importantly, please stay well!
That was such a great interview. I can’t wait to share it with my teenage daughter. We had the pleasure of meeting Crystal after the American idol concert this summer. She was so cordial, taking pictures with my daughter, showing her the tatoo , giving her encouragement and signing her testing kit. She is an inspiration for all of us that my daughter will have a great life with many opportunities. Also I am a PT and just treated a type 2 diabetic today who cannot afford insulin or meds. His sugars run in the 400′s. I was so sad for him. My daughter is blessed to have a pump and anything else she needs to stay healthy. GO CRYSTAL!! You are amazing and we love everything about you. We will be walking in the JDRF walk for a cure next weekend raising a lot of money and awareness. THANKS FOR YOUR SUPPORT!! The future for diabetes is very promising!!!
I have been waiting for an interview with Crystal! Fantastic. However, what I really wanted to know about her Idol experience – other than her hospitalization and threat of being eliminated – was how she managed blood sugars on stage! I always wondered how easy or hard it was for her (adrenaline can make sugars go up or down) to perform in front of a live audience. I can imagine she must have had to check her blood sugars right before she took to the stage and I think her experience on this specifically would have given great insight to would be stage performers. Maybe next time? Great stuff.
Thanh you Crystal, You are an amazing young lady. Thank you for sharing this with all of us.
You go, girl!! We need people like you to be advocates for diabetics. My daughter has had diabetes for 10 years, since age 3. So good to know that there are people like you out there who care! glad to find out about TuDiabetes.
What could i say. You have done a great job for the diabetic community as a whole. May god bless your soul.
[...] And that fact that she has type 1 diabetes and has spoken so openly about it (most recently in a DiabetesMine interview), makes me like her even [...]
Wonderful Article- just loved it! Made me cry… Keep up the good work Crystal and hope to see you at CC2011.
Cool. Trying to be an artist with T1 and seizures has been very hard for me so I know what you have gone through. If I didn’t have my Veteran’s Administration health care I would have had to fall apart, then die. You are blessed for hanging in there despite everything you faced. Good luck!
This site will be one I visit often – my son is diabetic and I am always on the look out for things to help him.
I am Crystal’s biggest fan in India, I surf the net downloading all the music she’s played that’s there on the net… I’ve never missed any of her performances when she was on idol… man I even have her pic printed on the glass door of my cabin in office. when I learnt that she was diabetic, it broke my heart. I am too and as a result I have had 3 heart attacks, three stents inside of me …. her voice, her intelligence and passion shows in her renditions of covers she does… and of course in her own music as well… a truly great artist.
I just came across this while searching for info for people to better understand type 1. My daughter was diagnosed at age 12. It is refreshing to hear people speaking about their type1. There can be an incredible loneliness with it for not only the children(who already have so much to deal with), but also the parents who care for them. People tend to lump diabetes together. When my daughter was suffering from DKA prior to her diagnosis, I actually had people asking if she was bulemic. Four and a half years later, people(even family) advise me on what she should eat or imply that she is dealing with type 1 BECAUSE of what I fed her. She is/never was an overweight kid. Contrary-she is very athletic and fit. Mind boggling. And frustrating- there are actually people out there that are so “helpful”. I am glad she did this interview and hope more people with type 1 in the public eye would step out and make it know the struggles that go on every minute of every day. Yes, they can and probably will live full and active lives and not be held back by anything. BUT… the constant,unending struggles that are exhausting need to be publicized and there if an immense need for educating the general public!!!!!!!!! They can’t simply eat better food and then they’ll be able to stop taking insulin and won’t have to deal with this anymore. They have a part of there bodies that is broken or does’nt work any more. through no choice of there own. thank you and I pray for your health and that you will continue to be able to help educate people.
[...] everyone comes together again that evening for a music performance by PWD and country music star Crystal Bowersox (we love her! see our [...]
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Anybody know where I can get a Size 8 /10 Karen Millen Pony (Black) Coat from? ,clarisonic brush