Team WILD – We Inspire Life w/ Diabetes

Team WILD

What does a diabetic look like?

Living with diabetes for the past 13 years people have said some pretty crazy things to me, concerning my disease. Some shock me more than others. The one that I got on a frequent basis is, “You don’t look like a diabetic.” This just happened to me last week. Once again, I was stunned in silence by the comment.

The women continued saying, “I mean I’ve just never seen someone so pretty, energetic, vibrant and happy. I’m used to seeing the ones who are old, tired, overweight and in a hospital bed.”

My eyes must of almost popped out of my head, she could see that I was shocked and said, “You know I mean this as a total compliment, right?”

I didn’t view it as a compliment. t responded back in the most polite way that I could, “There is no face of diabetes. It affects all races, ages, and demographics. The work that I do for diabetes is to help educate everyone that diabetes doesn’t discriminate, that all can be affected, and people will react differently to a diagnosis of a chronic illness.”

I would be curious to know from other people living with diabetes if they’ve ever gotten this comment before? How do you respond?

Simply Raw – Reversing Diabetes in 30 days

I have lived with type-1 diabetes for over 13 years. I’ve cried and I’ve laughed. I’ve watched my younger brother Will for 15 years go through trials and tribulations with diabetes. I can’t count the number of times I’ve met people and they’ve poured their diabetes story out to me. There is one main thing in common with all those people and their loved ones…we would do anything to have a cure for diabetes. Point blank.

When someone recently sent me a link to a site telling me that someone has found a cure for diabetes I knew right away that’s impossible. It’s impossible because there is no cure for diabetes (type-1 or type-2). Why? Because a cure means, “a means of healing or restoring to health”. Over the years people will come up to me and send me information on promises of a cure for the disease. I’m sick of places capitalizing on the diabetes epidemic. It gets people’s hopes up when they hear about something like this, when it’s not the truth. Please stop. Please stop your “creative leniency” on advertising materials.

Here is the link so that you can see for yourself the claim that I’m talking about…

http://www.rawfor30days.com/themovie.html

I think the VERY SMALL PRINT at the bottom of the page says it all, “The program featured in the film at the Tree of Life Rejuvination Center is most effective with diabetes type 2 but is also very effective at increasing quality of life and reducing insulin levels for diabetes type 1.” Decreasing insulin CANNOT be termed a cure.

So they’re telling us stuff that we already know…

• some type-2 diabetics can reduce medication and/or get off completely if they have the disease because of obesity
• some people are so ignorant about diabetes that they think they can use terminology like “reverse diabetes” when we all know that if you have type-2 and you no longer have to use medication (for whatever reason) you still have it, you’re just not taking medication
• finally, for their type-1 comments…we know the less sugar you eat, the less insulin you would need to take. You’re not telling us anything new…other then making yourselves look uneducated.

And to think that they have over 18,000 likes on their Facebook page for “reversing diabetes” makes me sad. Switch your banner headline to “a solution to help you treat your diabetes better” and then we can talk about me clicking that button.

To all of you who are even clicking “LIKE” on these people’s page is tough for me to swallow. In the preview of the movie on their website they immediately discredit the American Diabetes Association’s statement on how there is no cure for diabetes. As a volunteer for the ADA I’m sickened that people would question their statements. The work they do to unite people so we can actually find a “real cure” and to fund programs to help with your quality of life have personally saved me.

SIMPLY RAW: You don’t think I would pay $29.95 for a cure for this deadly, chronic illness that I’ve lived with for 4,805 days of my life? You don’t think I would pay $29.95 to take away the pain that my brother has had to go through to just be able to  be healthy enough to play in a high school varsity game? You want to make this claim to the world (with some small print at the bottom) and confuse more people about diabetes?

Quantity	Product	Price	Total	Remove
	Simply Raw: Reversing Diabetes in 30 Days	$29.95	$29.95
Quantity discounts are available for one or more of the items in your cart. Click here for discount options
Coupon code (optional): Subtotal: $29.95 Total: $29.95

Yes, if I ate raw foods every day I would decrease some of my insulin doses. If a type-2 were to do this, they may be able to get off their medication. But NEITHER of us are cured. Please stop your misleading headlines.

I hope that the diabetes community bands together to not support companies who make these claims, but we stand together to educate people properly on diabetes.

To learn more information about the different types of diabetes click here.

If you would like to learn about ways that you can get involved in the diabetes community please feel free to reach out to me and I would be happy to match you up with an opportunity. 

STOP DIABETES Gala – American Diabetes Association

On Saturday evening I attended my first ever American Diabetes Association, STOP DIABETES Gala. Novo Nordisk asked me to speak on their behalf at the event. I felt privileged to be able to tell my personal story. My brother Will uses Novolog insulin pens to control his blood sugars and I use Novolog in my Medtronic insulin pump. It was important for me to thank Novo Nordisk for giving us life. Insulin is not a cure, it’s our life support until a cure is found.

Justin, Liz, Me & Brian

It was an exciting evening with a live auction. I got so nervous when my date Brian started throwing his napkin up in the air to bid on the big golf package. He won and made an incredibly kind donation to the ADA. Both of his cousins have diabetes and is connected with the cause. The event raised over $220,000! The money will go towards supporting diabetes research, distributing information, promoting advocacy, and facilitating their summer camp program, Camp Needlepoint.

I was proud to be in a room with so many people who were personally interested in doing whatever they could to help find a cure for diabetes.

 

diabetes -> a family affair

This week’s blog features an article that my Mom wrote last year for the Lakes Country Jounal on what life is like with having two children with type-1 diabetes.

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It just up and quit. No reason, no warning, no explanation. Will’s pancreas stopped producing insulin. One day our five-year-old son was sliding down the snowy hill behind our house and the next he was in the hospital learning how to live the rest of his life with diabetes, an incurable disease.

Life as we knew it was over. The first time I put a hypodermic needle into Will’s sweet soft arm, I sobbed my heart out. I cried for Will and for our family and for a future that seemed beyond bleak. And then we kept going because the only options were life or death.

I asked our doctor if we should be concerned about our two older children. With no family history of diabetes, he told me we would be on the cover of the New England Journal of Medicine if we had another child with diabetes. Three years later, our thirteen-year old daughter, Quinn, was diagnosed with diabetes.

The good news was that we knew how to live with diabetes. The bad news was we knew how to live with diabetes. I cried out to God convinced that I had flunked His first test, requiring a retake at Quinn’s expense. He came down close in those dark days, reassuring us of His love and faithfulness.

Life rolled along in a new normal way. Insulin shots and blood sugar checks four times a day were wedged among school, church, friends, skating and sleepovers. Will and Quinn managed their own insulin doses. Thor, our oldest child, was the odd man out – the only kid who didn’t have to take an insulin shot before meals.

We got involved with the American Diabetes Association and put together a team for the annual Walk for Diabetes. We were overwhelmed by the generosity of our families and friends. When Will was diagnosed with diabetes, Quinn pledged to work the rest of her life to help find a cure. Now as a bonafide diabetic, she redoubled her efforts, pulling the rest of us along in her considerable wake.

Will and Quinn joined other young diabetics across the country in Washington, D.C., to lobby Congress for increased funding. They began to believe they could make a difference.

On the third anniversary of being diagnosed with diabetes, sixteen-year-old Quinn was named the National Youth Advocate for the American Diabetes Association. She traveled across the country speaking at conventions, advocating for increased funding to find a cure for diabetes and improved care for those living with the disease. She was invited to the White House and became a regular visitor on Capitol Hill. The best part of her year was visiting diabetes camps where she talked to kids about living with diabetes.

Quinn and Will found heroes. Will met Gold Olympian Gary Hall, Jr., the fastest swimmer on earth and a diabetic. Quinn became friends with Nicole Johnson, the only Miss AMerica with a chronic disease, diabetes. Our kids also became heroes. Quinn developed relationships with younger girls in our community with diabetes, cheering them on and challenging them to make the most of their lives. Will was a counselor at a diabetes camp. He helped boys understand that diabetes only limits life if they let it. He urged them to take control of their disease by managing their insulin shots and blood sugars. He showed them how to have crazy fun despite diabetes.

Will went off to college, packing his bike, laptop, sports memorabilia, and a large box of needles, insulin, and blood-testing supplies. I calculated how fast I could get to Texas in an emergency. “Don’t worry,” he repeated. “Diabetes isn’t that big of a deal.”

I had to agree. Diabetes is a footnote in our family, not a headline. It has brought us close as a family. Our faith deeper and our understanding of God clearer. Our children learned compassion. They know how it feels to struggle and they’re willing to reach out to others. They don’t give up easily. They’ve learned that the harder road isn’t impossible, it’s just harder. And in the scheme of things, diabetes really isn’t that big of a deal.

International Travel w/ an Insulin Pump

One of my favorite things is being able to talk with other people who have diabetes. On occasion some people send me questions about living life with diabetes. Not that I have the right answers, but for the last 13 years of living with this disease I’ve tried to do my best to live my life to the fullest. Here is a recent e-mail correspondence I had with a young woman my age. Thought I would share it in this weekly blog post… 

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Quinn-I am traveling to Thailand with my insulin pump in 2-months and I am a little nervous since it will the first time traveling to a less industrialized country since I started on insulin. How did the pump work out on your trip…I’m worried it will be so humid, that the pump will fail and considering just going back to using insulin pens for the trip.

Meghan

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Hi Meghan-

I wear the Medtronic Revel as well so good news! I remember when I was diagnosed my family pediatrician told me that I would never be able to travel internationally because it was too much of a risk. Luckily, I didn’t take his answer as ultimate truth.

One of the reasons why I continue to stay with Medtronic is because of their great resources available to their patients who do travel

internationally.

1. They have a great program called the “Travel Loaner” where you pay like $50 and they will send you an extra insulin pump to bring

Taking an elephant ride in Chaing Mai, Thailand with my Mom + insulin pump!

along on your vacation in the case that anything would happen to your main one. They make it super easy to fill out a form online..just make sure you submit it at least 2 weeks before you leave on your trip.

http://www.medtronicdiabetes.net/lifestyle/travel

2. Then they also have an international number you can call if you need anything.

  +1.818.576.5555 (also on the back of your pump)

3. On their site they list their Medtronic Worldwide Sales Offices and they actually have a location in Thailand!

 4. And Medtronic came out with a great thing to help with keeping the infusion set on when you’re in warm weather (I know I tend to be quite the sweater). You can order a specific taping from Medtronic called “Infusion Set IV3000″. I do hot yoga every week and this holds like glue!

http://my.medtronicdiabetes.com/ec_category?cid=a1PC0000000Hsv4MAC

I know for me I always do bring a back up supply of insulin and syringes in the case of an emergency, but Medtronic has made it so easy (and stress free) to travel internationally. I can travel with confidence that my pump will work and that I’m carrying a back up one if necessary. I also wear their Continuous Glucose Monitor so I prefer to stay on the same regimen that I’m used to in my regular life.

Ziplining through the Thailand Jungle

Do you have an iPhone? I just found out about this but Medtronic Diabetes has a really nice application that you can download for free and it has all this travel information on it and even a packing list, very helpful. You can do a bunch of other things on it like ordering supplies, pump alert meanings, and timers.

Another tip is I always bring along my Frio wallet for my insulin. Maybe you’ve heard of it? It’s quite cool, literally! Ha, ha. It’s a cooling

wallet that only uses water and air to do it. It was perfect when I went to Thailand because during the day it was HOT and I used to always worry about my insulin going bad but with this that worry goes away. You can check out their website…

http://coolerconcept.com/

Let me know if there is anything else that I can help you out with or answer any of your questions on diabetes or Pad Thai!

                                                                                                        Sincerely,

                                                                                                        Quinn

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Thanks a million for the information. I wish I could do the Rick Steeves thing and only travel with one carryon bag, but I think diabetes makes that near impossible!

Can’t wait to eat Pad Thai! My only thing with Pad Thai is I suck at counting the carbs in it!

Meghan

Surgery + having diabetes w/ Dad’s perspective

This last Tuesday I had to have surgery to fix a deviated septum, as well as having sinus reduction surgery. I had put it off for 2 years knowing that in the past I’ve had trouble with medical staff when I’ve gone under anesthesia. First off it’s always a scary thing to be put under, but then as a type-1 diabetic the fear comes in with the loss of control with blood sugars during surgery.

When I was in college I had to have surgery for my vocal chords and I went to a world renowned hospital for the operation. My mother had talked to the medical staff about me having diabetes and asking the questions of who would be monitoring me, etc. They seemed to know what they were doing and had the proper policies in place.

When I was rolled out of surgery and put into the recovery area I felt really off. I wasn’t able to speak because of the surgery (vocal chords) so I started signaling to the tips of my fingers to have them check my blood sugar. 10 minutes went by. They test my blood sugar and I’m 45. The nurse tells me they’re going to have to go and get approval from the doctor to get sugar into me. I cannot speak, literally. I’m baffled that this is happening. I feel helpless.

When I’m wheeled into the room where my Mom is waiting for me I tell her what happened. Needless to say she was very worried and upset at the hospital for not doing what they said they would do. They may have great policies, but what do their actions show? My Mom wrote a letter to the diabetes department of this hospital with the hopes of change for future diabetes patients.

Instead of dwelling on past negative stories I always try to think in a way of what did I learn from that? So my Dad, who was my companion at my surgery on Tuesday, is guest blogging to give the parent perspective tips:

1. Be very straightforward with the physician that your child has type-1 diabetes and that blood sugars can really be thrown off during surgery (stress, etc.). Make sure the anesthesiologist going in knows everything (type of insulin, what your blood sugar range is normally, pump or shots).

2. Have a feeling that they understand the severity of blood sugars and that someone is there during the surgery monitoring the blood sugar (make sure someone has been delegated to it).

3. Don’t assume because they’re a healthcare institution that they have up to date training with diabetes. Ask them a lot of questions with what are they looking for to monitor me? What are they concerned about with having a patient with diabetes go under? Engage them in a conversation and be a part of the planning. I knew that Quinn’s surgeon was familiar with diabetes because he made a comment on how he was not going to give her Prednisone because that elevates her blood sugar. I was relieved to know that it was at the forefront of his mind going into the surgery.

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It’s a complicate disease. Surgeons have a lot to think about during the surgery. As the patient (and consumer) make sure to be vocal and up front about your concerns so that they become at the front of their minds as well.

I’m happy to say that all went well at the surgery on Tuesday and I’ve been recovering up at my parent’s house in Brainerd the last couple of days.

Get Involved!

Get involved with the American Diabetes Association with some fun upcoming events! I would love to see you at 1, 2, or all! Please let me know if you have any questions regarding the events listed below. 

1. Twins vs KC Royals @ Target Field – Sunday, April 29th 1:10pm

Buy a ticket for $30. The seats are in the home plate view section. The proceeds from this will go directly to the American Diabetes Association. Join me for a fun day out at Target Field! Park your car at my house beforehand (for free!) and we can take the light rail downtown. I need to know if you’re in by Tuesday for this game. Once I get your check in the mail I will send out your tickets to you.

2. Twins vs Tigers @ Target Field – Sunday, May 27th at 1:10pm

If any of you participated in this game last year with me…all 100+ of us in our group had a BLAST! Don’t miss out. Tickets are limited and on a first come, first serve basis. Ever wanted to walk on Target Field as the Twins were warming up!?! This is your chance! Not only for $40 do you get the opportunity to do a pre-game parade on the field (only our group!), but before the game join me at my house for a BBQ lunch. FREE parking included…just leave your car at my house and we will take the light rail downtown. Don’t miss out on this incredible opportunity!!! Feel free to pass this info on to any friends, family, or co-workers. Hurry though…tickets are going fast!

Gameday Parking + Lunch + Pre-game Parade at Target Field + U.S. Bank Home Run Porch View Tickets + supporting the diabetes cause = priceless (or $40 however you look at it) 

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3. Tour de Cure – June 2nd

 http://main.diabetes.org/goto/tourdeq

Once again, Team “Tour de Q”, will participate in the American Diabetes Association’s Tour de Cure fundraising event on Saturday, June 2nd. We would love for you to join us for the cycling event through the Twin Cities or sponsor us for the ride. I will be opting for the 45-mile route while others prefer the 27-mile scenic option or the 8-mile river scenic ride. My personal goal this year is to raise $13,000 in honor of the 13 years that I have lived with diabetes. This money will go to help find a cure for this terrible disease and improve the lives of those affected.

One out of three babies born in America this year will develop diabetes in his or her lifetime. I know that the fight to find a cure is formidable. Some may think it’s impossible. However, curing diabetes is not only my platform, it is my life purpose. We need to have hope that a cure is possible, courage to continue to fight, and faith to know someday the battle against diabetes will be won. Together, I know a cure is within walking distance.                                                                                                                                                        

Perfect A1C?

There seems to be quite the debate out there about the perfect A1c and what it should be at for people living with diabetes. For what it’s worth here is my personal opinion on it…..

To me your A1C is like your weight. It’s incredibly personal and it’s just a number. I’ve talked with top endocronligists who’ve said that someone with an A1C of 6.8% though it looks good on paper what you’re not seeing sometimes are the dangerously low and high swings. I had a low A1C but I was struggling with bad hypoglycemic reactions that my Dr. told me a healthier thing is to look at staying below 7.5% as a type-1 diabetic.

Emily Stunek & I passing out diabetes advocacy literature at the Brainerd 4th of July Parade

I’m not out here advocating for A1C’s to just be whatever. I believe in good control of your diabetes and working hard each day. But sitting in the emergency room on a Friday night because my blood sugars would not drop below 300 (in 48 hours) because of a bad reaction to prednisone. I WILL NOT, WILL NOT, WILL NOT beat myself up over times like that. I will not obsess if situations like that will slightly raise my A1C test. To me that’s not healthy. Having diabetes we have to realize that we don’t always have full control of our blood sugars.

I want people I speak to to know that I’m not perfect, that I’m a regular patient who tries to hit my goals on a daily basis. I don’t speak of being the “perfect diabetic” because I don’t think that’s a true statements about anyone living with diabetes. Living with a chronic illness there are some things you can’t control.

My Tips to Live by

1. Do your best each day

2. Reach out for help to your medical team when needed

3. Be kind to yourself

I’m a real person, with real struggles. My mission in life is to talk openly and honestly about those to other people living with diabetes. I try my hardest and so when I rest my head at night and pray to God I’m happy with the job I’ve done and I pray that a cure for diabetes will be found.

Anniversaries abound!

My 13th Diabetes Anniversary was on March 17th. It was a wonderful day of celebration with friends and family. Thank you everyone for your kind words!

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Here is an e-mail that I received this last month that I wanted to share with all of you…

Hello Quinn,

Our adult son, Brent, is self-employed and has been uninsured for almost 20 years because he was unable to find a plan he could afford, or an insurance company that would be willing to provide him coverage, due to his type 1 diabetes. This left him having to pay out-of-pocket for all of his supplies and insulin, which has been financially devastating for him.  Are there any other options out there for him?

Sincerely,

Connie

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Dear Connie-

I’m so sorry to hear about the struggle that you’ve all been through to try to get basic health insurance to cover Brent’s diabetes supplies.

The American Diabetes Association has a wonderful (FREE!) resource that you can use - Center for Information and Community Support. This is the best diabetes resource I’ve found yet…they will find your answer. They have wonderful professionals on the phone, live, to speak with you.

1-800-DIABETES (800-342-2383)

Please keep me updated on what you find out.

Sincerely,

Quinn

UPDATE: That same day Connie called me on the phone and she was practically in tears because the ADA had forwarded her the information about “Pre-Exisiting Condition Insurance Plan” (PCIP). Their purpose is to: “make health insurance available to people who have had a problem getting insurance due to a pre-existing condition.” She had never heard of this before, neither had I. I talked with Connie last week, “He was just approved for coverage he can afford under the Texas Pre-existing Insurance Plan. This has changed his life, and ours, and we are so grateful.”

Health insurance is critical for people living with diabetes. With no insurance there’s very little likelihood that you can afford all of the supplies you need to stay in good control of your diabetes. President Obama passed the Affordable Care Act two years ago on March 23rd. This is why we now have Pre-Exisiting Condition Insurance that is now made available to people in the United States. A blessing indeed.

To find out more information about PCIP click here…