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.

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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!

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.

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!
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

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…
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.