"I Don't Live Like I Have Diabetes"

(Editor's Note: As you'll soon see why, San Antonio marketing director Ray Hoese is proud of his teenage daughter, Jordan. One evening, he e-mailed some questions to his daughter upstairs, and these were her responses.)

Ray and Jordan Hoese post-marathon, looking remarkably well after a grueling 26.2-mile run

Apr 22, 2008

A Question-and-Answer Session With Jordan Hoese, A 14-Year-Old Type 1 Marathon Runner.

You’re only 14 and have type 1. What made you think you could run a marathon?

Actually, neither my age nor diabetes crossed my mind after I decided it was something I wanted to do until my dad brought them up. I don’t live like I have diabetes, and it’s our joke in the family that I “don't really have it” because my control is so good. Honestly, I forget all about it when I'm not checking my blood sugar. So when I first got the idea that I wanted to do the marathon, the whole “I’m type 1” issue wasn’t even an issue in my mind, mainly because being type 1 is not an issue. As for being 14, it’s just a number. I’m told I don't act like I’m 14 or look like it, so it’s not even a number I really connect to, which is probably why I didn’t think of it.

Which marathon did you run?

We ran the AT&T Austin Marathon in Austin, Texas, on February 17, 2008.  It took us 4 hours and 15 minutes.

Was it your first?

No, actually, I did one when I was five. Just kidding. Of course it was my first!

How do you know you’re the youngest type 1 to ever run a full marathon?

It occurred to me that I might be the youngest about a month or so before the race. So I looked up the current record online for type 1 diabetic marathoning (age-wise), and it was a 24-year-old guy. I’m 10 years younger.

How did you train for it?

My dad and I were both in good shape because I ran a lot anyway and he’s a cyclist, so we only trained for three months. We’d run two or three times during the week, and then take a longer run on the weekends. The long run started out at six miles the first week, and then it was seven, and then 11, then 15, and then, finally, a month before the race, we went out and ran 24 miles around the neighborhood. Four hours of running in six-mile -circles!

Our neighbors probably thought we were crazy. But it was a lot of fun. We were going to go walk two miles afterwards to say that we covered marathon distance, but we got home and were like, “Wow, my legs hurt now.” So we didn’t. I sat on the couch and watched a movie. But after that peak, we started making our long runs shorter. A week before the marathon, we did a 10-mile run, and that Wednesday we ran four miles. That was a sad run. Training was over.

What was it like when the starting gun went off?

Loud, because it was a cannon. No, it was really amazing. There were so many people, and they were all running and people were cheering. It was still dark when we started, and as we crossed this bridge right off the start line, all these fireworks got set off. It looked like the Fourth of July. But there was so much adrenaline in the crowd that it was contagious! I mean the crowd of runners, not the huge crowd of bystanders, although they had a lot of excitement and spirit.

Were you ever nervous or scared about trying the marathon?

Like two weeks before the marathon, we hadn’t been running as much and my dad got the flu, and neither of us really ran for a week. That made me really nervous about being able to finish the marathon, even if it was just an irrational fear. I knew that, but I was still worried. My dad pointed out to me, though, that we had run almost a marathon distance three weeks before and that was no problem, and, if anything, we were fitter now. So I cooled down a little. I was still nervous up until the night before the race, though. I was sitting there and I said to my dad, “Dude. This isn't going to be hard at all!” He said something to the extent of, “Duh.”

What do you think when you hear people talk about their child's diabetes as a handicap?

I remember the day I got diagnosed, my family already knew about diabetes, so from the second I heard the doctor say that I had it, I was crying. We went to get blood work done (my blood sugar was only 233, so no hospital for me), and the receptionist looked at me and said, “When I was your age, I had cancer.” Yeah. So I think that people who think diabetes is a handicap are wrong, obviously, because there are much worse things out there.

Diabetes is not hard to deal with, it is not something that has to affect your life, it is not something that you even have to think about. Seriously! It doesn’t take that much thinking capacity to check and bolus! And once you do that, you’re done. There may not be a cure for diabetes, but there’s a 100-percent guaranteed effective treatment, which is more than a blind person or someone with cancer or AIDS can say. Anybody who says diabetes is a handicap just doesn't know that all they have to do is check (a lot) and bolus (or eat) accordingly.  

How do you control your blood sugars?  Do you have any issues, problems or complications?

I check my blood sugar, and then I give insulin for the carbs I eat! That’s as in depth as I’m going to go, because that's all there is! I check about six or seven times a day, which really only takes a total of, like, 30 seconds, and when I eat carbs, I give insulin. Oh! When I run, I burn blood sugar like nobody’s business, so I have to eat about 30 carbs for about every 40 minutes I’m running. That's kind of a pain. Especially because if I so much as think about insulin while running, I will drop faster and need to eat more Gu or drink more Gatorade.

If I actually have insulin (even leftovers from the insulin I bolused at lunch two hours ago!), I can’t run. Because of all that, we’d have to stop and check every three miles during training. But during the marathon, we used a Dexcom continuous meter so we didn’t have to stop at all. It made everything a lot easier. And it probably made our time faster by at least 20 minutes. It was fun to run like I wasn’t diabetic for once! All I had to do was glance at the Dexcom and drink the Gatorade the people at the aid stations hand to you!     

Anyway, I check my blood sugar, and then my pump tells me how much insulin I need for how many carbs I eat – a 30:1 carb ratio, a consequence of running – and then I adjust (or don't) based on blood sugar. My A1c is always somewhere between 5 and 6.5% and I have never had a severe high or low, or been hospitalized, or had an issue or problem or complication with diabetes, and I don’t plan to!

Tell me about your pump therapy – how/who adjusts your basal rates, ratios, and all that stuff. How often do you adjust things, running a marathon and otherwise?

First of all, I do everything myself. Aside from the process of figuring them out, as I’ve gotten increasingly fitter over the last year and a half, I don’t adjust my basal rates or ratios very often. My basal stays at.25 units an hour, except at night, when it’s .2u/h because my dad is paranoid about nighttime lows and I have to keep him happy, and my ratio is one unit for every 30 carbs. That’s not a lot of insulin. I’m really insulin sensitive because of all the running I do, so a little insulin goes a long way. A tenth of a unit drops me between 30-50 points. A whole unit is only something I would want to do if I were above 300.

I’m on a Medtronic MiniMed pump that I put NovoLog in, and I also have NovoLog in my insulin pen. I avoid the pen at all costs, though, because I’m a total needlephobic. As far as blood sugar, because of my insulin sensitivity and fitness, I go low if I so much as walk half a mile with my pump on. So my pump is quite frequently suspended, usually because I’m walking around or it’s a while until dinner. I don’t wear my pump or bolus for at least an hour and a half before running, if I can help it. Running, plus residual insulin, equals a big drop really fast.

About doctor visits…. I feel like a rebel now – I don’t keep a logbook. My meter has a feature that tells you your averages, and I read that to my doctor. They’re all in range, so my doctor visits – which are with a great endocrinologist who realizes that my dad and I know what we’re doing diabetes-wise – are basically just casual discussions about stuff after all the paperwork gets done because we don’t really have any treatment questions. Last visit, we just talked about non-insulin-mediated glucose uptake in skeletal muscle, and proteins, like Glut 4, that facilitate glucose diffusion. So I look forward to doctor’s visits, ‘cause I’m a nerd like that. And because they’re usually during school hours.

What advice do you have for other type 1s?

Take care of yourself. I know so many diabetics who just don’t realize or care that staying alive is so easy. You don’t have to be a runner or a biker or an athlete to be healthy with diabetes – although it’s cooler if you are, in my opinion! You just have to check and then bolus. Diabetics are seen as handicapped because people just don’t check their blood sugar or give the right amount of insulin.

I know I sound repetitive, but it’s as simple as that. I know so many people who make the fact that they have diabetes their life, and they still have really bad blood sugars! But you guys should know that type 1 doesn’t have to be your life, because it’s not that complicated. And in the words of my favorite runner of all time, Forrest Gump, “That’s all I have to say about that.”

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Posted by scarrie72 on 22 April 2008

Wow! How could anyone not be impressed with the maturity and spirit of Jordan? It sounds like you have everything under control, and that's wonderful. But please understand that not everyone with type 1 has it so easy. My six-year-old uses four different basal rates throughout the day, plus a different pattern altogether on the weekends. Her ratios range from 1:10 in the morning to 1:30 in the late afternoon. She checks herself 8-10 a day and her blood sugar still seems to have a mind of its own. So for my daughter, diabetes really is complicated and far from being simple and easy. I am truly impressed with your determination and drive. Much luck to you in the future.

Posted by Anonymous on 23 April 2008

I'm very impressed with Jordan! But, EVERY diabetic is different. What might be easy for you is not easy for everyone else. I've been very strict with trying to keep my diabetes undercontrol but,unfortunately I don't have it as easy as you. I test 9 times a day and sometimes more. I have 5 different basal rates. I can do everything by the book and still end up with a high or low. There is so much that affects my bg readings that it's not even funny. So, to say that all you have to do is test often...hmmm
I suppose it would be easier if insurance companies covered more of the costs of the test strips so that we could test more often.
Good luck Jordan and looking forward to seeing you in the next race!!!
Go Jordan, go Jordan, go Jordan!!!!!

Posted by Anonymous on 23 April 2008

I've been on insulin since 1963 and the technology has come a long way. Everything was boiled and nothing was disposable. I still remember my dad sharpening needles on the inside of a drinking glass. I just started the pump and can't believe the difference it's making for me. By the way, I still have my eyes and all my fingers and toes. My biggest concern about starting the pump was if I could still ride roller coasters and water ski. Glad to see a story like Jordan's. It is sure to inspire folks a lot younger than I am. Just wish I had that kind of inspiration when I was younger.

Posted by Anonymous on 23 April 2008

amazingly inspirational!

Posted by Anonymous on 23 April 2008

Outstanding! I'm so glad to see a girl interested in science and talking about GLUT-4. Look out, Ivy League schools! Whatever her parents did to raise her so well, good job...I hope I turn out to be just as good with my kids. We all like nerdy kids!

Posted by Anonymous on 28 April 2008

I think this is a great article, and this girl sets a wonderful example of how T1 diabetes *may* not have to impact your life in a negative way. BUT, as stated already by another poster, not all of us are "lucky" enough to have easy control and run marathons.

I don't want to burst this girl's bubble, but I felt the exact same way as her at age 10 (only 8 years into diabetes for me). Usually, after about 20-25 years of diabetes (I'm 26 now, so I'm at this stage), the "I can do anything and diabetes doesn't stop me" mantra wears thin or becomes untrue.

I have severe swings in BG, despite wearing a pump, watching my diet, staying very thin, and testing 12x per day. I have had seizures in the past (I'm very insulin sensitive). Exercise can throw me out of balance for the day (I jump high, and may or may not crash later). It is s nightmare. I also live with Celiac Disease, Hashimoto's, severe Asthma, and severe multiple allergies (all related as part of my dysfunctional immune system syndrome). And I don't even have any complications yet!

What about those who develop severe complications early despite good control?!

I also hate those who say it could "be worse". For some of us, it IS "worse". It's all relative. I personally am not happy having seizures, and the diabetics I know aren't happy about being blind with kidney and heart failure at age 30 despite trying their best to control their blood sugars. T1 CAN be a very horrible and unmanageable disease for some. To deny otherwise gives no reason to cure it. Why cure a "manageable" disease?!

As the receptionist in the article said, she "HAD" cancer, and she is now cancer free. No offense to those who have had cancer, but many (though not all) of those people are now living relatively healthy and cancer free. I know 3 people who beat cancer as kids and are now healthy adults. The diabetic (T1) is stuck controlling this disease *themselves* day in day out forever, with the constant threat of acute and long-term complications. Why is this so hard to see for the public at large?

I wish this awesome young lady all of the best, and I hope she doesn't see my comments (I would not have wanted to when I was in her mindset), but I have to speak out for others who know that there IS another side to T1 diabetes.

And yes, sometimes it is NOT pretty. I cannot manage my autoimmune diseases (including T1) no matter what I do, and I don't want people to somehow think that they have no impact on my life. Nothing could be further from the truth, and I want a CURE, not a better meter or new insulin so I can "manage" this disease until my body finally gives out.

We have to walk that fine line between promoting that T1's can do anything, and having a severe horrible disease that needs a cure. Do articles like this hurt or help us? Something to ponder.

Lastly, does this girl really have autoimmune (classic) Type 1 diabetes? Or could she have MODY, a newly discovered rare genetic form of diabetes (which is not autoimmune)that sometimes presents more like Type 2 diabetes in young thin people (it runs in families)? MODY is often more easy to control and some subtypes don't even need insulin.

Posted by Anonymous on 28 April 2008

There is a new generation of type 1's out there. And this girl represents it. I know her. She is "classic" automimmune and takes synthroid as well. She's not perfect, but between her great control habits, and her great attitude, she will triumph over whatever life throw at her. There are many, many type 1s now who are fire fighters, police, pilots, Ironman Triathletes, and many other physically and mentally demanding jobs -- and this new generation excels, despite these "obstacles."

Whether you're stuck in a wheel chair, have cancer, or something as simple as diabetes, it's all about attitude baby. This girl has it!

Posted by Anonymous on 6 May 2008

something as "simple" as diabetes! ok yeah this girl rocks and her control is amazing. however, diabetes is by no means simple. the testing and injecting are simple but trying to figure out why you're high or low for no reason is not simple. it is frustrating and mentally exhausting! i've had T1 for 8 years now and still get very frustrated. my control is average but no where near perfect. every day is different even if i eat the samething everyday my numbers will not even be close to what they were the day before.

Posted by Anonymous on 9 May 2008

I am not sure how you can be a T1 and not THINK about it unless you are testing. I have been a T1 for 16 years and from the moment I took my first insulin injection, have always thought about being Diabetic. I am sure that I can speak for the people that I work with, who had to help me out of an extremely low blood sugar a couple of weeks ago when I say that this is not a piece of cake. I am very thankful for everything that I can do and every day that I am here on Earth. I have known other diabetics that believe it is only taking your shot and watching how much sugar you eat. I will just say one word "Denial." The sooner this girl understands HOW important it is, not only to be in good control, but to realize, it does not just go away, because you don't, or don't want to think about it. I am very happy for her to have been able to do this, but, I am a realist. Like many of the others that posted, I too have had days of unexplicable highs and lows. Just because this young lady has not had any problems running this marathon, does not mean that she will be okay in her next one, or her tenth. Or that in 5 months her metabolism does something to throw her sugars out of whack. I swear that it changes with the seasons. This disease is a handicap. Just like someone in a wheelchair, I carry my testing supplies, juice packs/glucose gel, cracker packets, extra needles, alcohol swabs, insulin, diabetic id and anything else that I may need to get through my day with me at ALL times. I know how important good control is and that is what makes me so angry when I (as well as all you others out there) cannot achieve what is so important. God Bless to all of you who know this agony. May we all be able to rise above.

Posted by Anonymous on 13 May 2008

If she started a good MDI routine before all her ß-cells were destroyed, it's possible she still has enough insulin producing capacity to give her a cushion that makes it easier to manage. She could be in an extended honeymoon period.

Posted by Anonymous on 16 May 2008

Okay, gang. I've had this "damn" illness for thirty years this January. NO retinopathy, no kidney disease, all fingers/toes. Been on a pump for 21 years, as well. I agree with Jordan. This disease can be forgotten unless you are testing or wondering what amount of insulin to take. Have done Triathlons before it was cool (1989 was my first), but slowed down when I had children. Jordan presents as a model person with Type I. Many of the replies to this article sounded like a bunch of whining Type IIs if you want my honest opinion. AND I am a healthcare provider as well. So Jordan, Keep running!

Posted by Anonymous on 19 May 2008

okay... I'm not sure if this girl has type 1 or not... because to not ever have any lows or highs and always be in good control? I have never been able to get my a1c below 6.6 in the past 8 years! and I do follow the rules, take insulin from my pump, test frequently. I strongly dislike the comments Jordan made toward the t1 diabetes community, because it really never has and never will be as simple as "test and bolus". Does she know that "real" diabetics have so many other things to deal with? I cannot forget about diabetes, because it impacts my mental functioning, coordination, relationships, MOODS, and the fear of the highs after eating are a constant worry. I seriously doubt this girl has lost insulin production in her pancreas. And please Jordan, do not talk about this "easy" disease as if you disdain the "complainers" out there! OMG, ya, it is JUST a bolus for everything I eat!!!

Posted by Anonymous on 21 May 2008

I didn't say where it said how long Jordan has had diabetes, but since she's only 14, I know I have had type 1 diabetes twice as long as she's been alive, 34 years. I'm happy for her that she has never experienced extreme highs or lows. But she's being naive, and showing her lack of experience, when she says it's easy to avoid them.
She is a remarkable and inspiring person. She could become a better person with a little more humility and compassion. But she's young. I expect her to become even more amazing as she matures.
I have had minimal complications. I've run 44 marathons, and run or hiked a marathon distance or longer man more times than that. I'm not a whiner. I just know from experience that this isn't always easy.
I've gone through periods of time during which I thought I had it all under control. I know others who have always had a hard time with it. I'm not going to judge those who have had more complications than I have.
Diabetes is different for all of us, and it isn't easy, at least not forever, for any of us.

Posted by Anonymous on 1 July 2008

I think that she has an incredible attitude and that is what makes all the difference in managing her diabetes. It takes the same amount of time and energy for her to test and bolus as any other T1 but because she doesn't let this disease control her life, I can see why it feels less onerous to her that it would to someone else who has a less positive attitude.

It also sounds like she takes extremely good care of herself and that her family plays a very positive helpful role in making sure her diabetes is not overwhelming for her.

I can only hope that my T1 daughter grows up to have that level of confidence and control.
Hats off to Jordan and her parents.

Posted by Anonymous on 15 July 2008

Unfortunately good control can only reduce, not eliminate your chances of complications.

I admire her attitude, but disagree with the way she trivialises type 1 diabetes because I know people with 'good control' who have died from complications.

And yes I have type 1 diabetes myself, last HBA1C was 6.3 but I still face complications because GOOD CONTROL DOES NOT STOP YOU FROM GETTING COMPLICATIONS - it just lowers the odds. Do you feel lucky?

Posted by Anonymous on 24 March 2009

Jordan does not have Type 1 for more than 20 years as myself, therefore she is not an expert on how awful this disease really is.

I am in my mid thirties I have this disease for nearly 20 miserable years. Sure I keep my Blood Suger (BG)under strict control so thus far my A1C's are pretty normal (last A1C was 6.1%).

However if you have this disease for more than 20 years the BG starts to swing with high's and SEVERE LOWS. My Endocrinlogist says when you have this disease for more than 10 years the LOWS start to increase.

I always work out on my treadmill however after my workout the LOWS appear no matter what I try to do. The irony is the LOWS appear a few hours later.

I don't have Celiacs and/or Crohns Disease however I am Anemic. So I know that my weak immune system is being compromised 24/7.

By the way cancer may go away however
the disease may return with a vengeance and may become terminal.For those that say Cancer is preferable over Diabetes get a reality check.

I also frown on the word "Handicap" this has nothing to do with Diabetes.

The bottom line is you have to moniter what you eat (keep counting carbs), check your insulin dosages to avoid lows (I know it's not as simple as it looks), and keep checking your blood sugar level.

I know the gluco stix are expensive. For those that are not insured the cost can be tremendous. I live in Canada the Canadian Diabetes Foundation is reimbursing 60% of the cost of the Gluco stix you buy.

How does this work? The Endocrinologist has a form you fill out. Retain all your receipts and mail it. A few weeks later you will be given a check for 60% of the total cost you paid for the stix.

Wheather you live in the US or in Canada please check with your Doctor.

I know a cure will be available the golden question is WHEN? The last time I checked we are in the 21st Century.

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