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Thursday, August 16, 2012

Public Radio’s Kurt Andersen Tackles Misunderstandings About Diabetes

Author and public radio host Kurt Andersen stopped by Here & Now studios at WBUR in Boston. (Jesse Costa/Here & Now)

Kurt Andersen is a novelist and host of public radio’s Studio 360. We spoke to him this summer about his new novel, “True Believers,” which tells the story of a high-achieving woman and how the 60s shaped her. Present throughout the story is the protagonist’s struggle with type 1 diabetes.

It’s a topic that Andersen knows all to well. He developed Type 1 diabetes when he was an adult and said he really couldn’t find diabetes described in a story. Here & Now’s Robin Young spoke with him about living with the disease, the conversation is excerpted below.

Let’s remind people — Type 1 diabetes is the disease in which the pancreas, which produces insulin, has been completely destroyedWhereas with type 2, at least in the beginning, insulin is still being produced, but isn’t properly used in the body. Unless they choose an automatic pump, people who have type 1, like you, have to constantly monitor their blood and inject insulin.

We do, and I don’t know if I can speak for everyone with type 1, but it wasn’t our fault! It’s not a result of lifestyle choices or anything else. It’s simply some still-mysterious combination of genetics and environment that causes your pancreas to go kaflooey at some point.

And you can’t change it — The pancreas is shot.

It’s gone. Yeah. So as a result if you manage it well, you test your blood many many times a day and inject insulin accordingly to try to do what your pancreas isn’t.

We always hear from people when we use words like “fault,” to distinguish type 1 from type 2. There are people who have type 2 who say that it isn’t their fault because some have a complicated medical condition called insulin resistance.

I understand that and I was being somewhat tongue and cheek. And there are tens of millions of people with type 2 diabetes, which is the more familiar one that is skyrocketing in incidence, and there are only a million or 2 million people in the United States with type 1.

And sometimes the people with type 2 can reverse theirs, sometimes they do need to use insulin themselves. But let’s get back to your character. One of the things that jumped out at me and a friend with type 1 was this idea that people with diabetes might have mood swings because of the high and low blood sugar.

It’s mostly low blood sugar that causes significant and problematic moods, often when people are trying to control it too tightly, inevitably sometimes you overdo and you become hypoglycemic. It is biochemically the same thing that some [non-diabetic] people feel when they’ve missed a meal or two and get cranky.

A friend of mine the other day was talking to me about this, he was unaware of the nature of my constant blood checking, and he said ‘I’m kind of jealous. I would love to take a drop of my blood any time I’m feeling angry or upset or confused… and thereby have the objective answer of whether it’s actual emotion or just some fluke of my blood chemistry.’

But yeah, that is the issue. And of course people say, ‘Oh diabetes, it’s treatable.’ And that’s all true, but it is also… a thing that requires management and as I depict in this fiction, has these subjective effects that are invisible to the world.

It’s one thing to be aware yourself that you may be getting cranky because your blood sugar is low. But if people around you know you’re diabetic, they might try to rob you of real feelings. Has that happened to you, where someone says, “Oh come on, you’re just getting a little low,” when you really feel something?

Of course, and there’s nothing more annoying than that. Or than the well-intended people around you who say, ‘Oh, are you low?’… This sense of being infantilized and being treated as a kid who isn’t aware of his or her emotions or state of wellness.

Because of that fear that someone’s just going to assign my feelings to my diabetes, a lot of people don’t tell others they are diabetic. Your character does tell people, but do you? You are now.

I am now, but I never have. I’ve never been a big poster person for it. I’ve never denied it. And like my character, I’m pretty brazen about pulling out the works and shooting up [with insulin] in the middle of restaurants and so forth. And I didn’t do this in order to achieve sympathy, I just thought it was an interesting thing for a character in fiction, because only in fiction can you really get inside somebody’s head and suggest how this feels.

At one point the character does relay something very familiar to people with type 1 diabetes. She had to call 9-1-1?

Well in that case, her teenage daughter has to call 9-1-1 because [her mother] has gone into a coma. And if people are not well trained by their doctors when they’re diagnosed or if they’re a kid or for whatever reason they’re not managing it carefully, when blood sugars go too low it can be a really serious situation.

Guest:

  • Kurt Andersen, author of “True Believers,” host of Studio 360

Please follow our community rules when engaging in comment discussion on this site.
  • dialyn

    ” This sense of being infantalized and being treated as a kid who isn’t aware of his or her emotions or state of wellness.”  Women have this happen all the time…if we show anything but a smiley face, we are asked “is it that time of month?”  If we dare to be angry or have range of emotions, “what, are you going through menopause?”  It’s sad to find that, in this information age, people are still so incredibly ignorant.  

  • Maproot

    Thanks for concentrating on a character with Type1. I grew up in the 60′s with a Type 1 mom; born in the 1920′s, she was one of the first generations to even have insulin. There were no blood sugar monitors or much to help, so numerous ambulance calls and hospital visits. Would also wish you talk about the danger of complications. BTW, Type 2 is also complex, and am glad it was “tongue in cheek” about fault

    • Jehnubbi5

       this is going out to EACH and EVERY diabetic who is going through an altered life and their care takers. Don’t beat yourself up over not being perfect, you’re doing a great job. I’ve been a diabetic for 47 years, since i was six, and whether you believe in miracles or blessings or anything even remotely religious, you are here for a reason. One of mine has been to educate health care professionals that we are PEOPLE too and not just a disease to treat!! Imagine that…I also have two healthy children and the same supportive partner who fell in love with me before knowing that I was diabetic. DON’T GIVE UP! A cure would be nice, wouldn’t it, but in the mean time, congratulate yourself and those helping you out that you are in fabulous company.

  • http://www.facebook.com/don.norbeck Don Norbeck

    Great show guys.  Type1 gets under covered in the media.  I have been Type 1 since age 19, I am now 40.  Its a daily balancing act.  But over the last 10 years I have become more open with the daily things I need to do, Like check my sugar in public vs running to the rest room or meeting room at work. If people have an issue or more likely a question I educate vs. shy away. 

  • Louise

    My son has been a type 1 diabetic since age 18 in 1984.  He has an insulin pump and does very well.  My worst type 1 experience was not with him, but with a friend who died 20 years ago from the effects of her type 1.  I called her on the phone and her speech was slow and blurred: an obvious sign of too much insulin in the system.  The treatment is a dose of glucose: sugar water, orange juice, anything.  I ran over to her house.  I had a key for just this sort of occasion.  I found her on the verge of unconsciousness and couldn’t get anything into her, so I called 911.  The EMTs came and when I tried to explain, the one said “No, my grandmother has diabetes and she can never have sugar”.  So finally they took her to the hospital, probably killing off a few hundred brain cells  by not treating her properly and rapidly.  Diabetes care has progressed dramatically since my friend developed it at age 6, and I have seen the progress in my son’s much-improved care.

    • dejahthoris

       Wow, what the EMT said about not giving your buddy sugar made my blood boil!

  • Vanwitz

    In the Pacific NW the incidence rate of Type 1 in children is 1:300.  This info is anecdotal, based on pediatric endo offices in Washington and Oregon.  An Advisory Committee to the state of Oregon, following Gracie’s Law, passed in 2002, was en route to creating the first data base in the US.  Info was being gathered via public and private schools, pediatrician, family practitioners, ped. endos offices.  With hard data, the hope was that research would follow–perhaps followed by allocations of funding for this research.

    Unfortunately, the Oregon legislature voted not to spend $100,ooo for the biennial (2008-2010?) to continue this work and the data system is defunct.

    I founded and ran Children’s Diabetes Network from 1999-2008.  We provided continuing education and support to families throughout Oregon to help with this complex disease.  In rural areas there are no pediatric endocrinologists and care is haphazard.

    As of 2008 toddlers were the fastest growing group being diagnosed with Type 1.  Talk about challenging situations.

  • roni226

    Thanks for the story – it was unexpectedly gratifying to hear. I have had type 1 since age 3 – 20 years now. Growing up with diabetes, the most frustrating experience for me as a child was everyone asking me “are you sure you can have that?” or worse – telling me that I couldn’t – when I knew better than anyone (except perhaps my parents) what was best for me. As a teenager I became shy and insecure about exposing my disease to others and chose instead to hide it. As a result my diabetes was in terrible control as I would knowingly ignore my blood sugar levels rather than treat them in front of others. I have recovered from this fear of exposure for the most part, and my diabetes is in excellent control, but it still is a burden that I carry with me every day. I can’t escape – at all times, some part of my mind is monitoring my blood sugar, probing for what needs to be done next. Learning how to relax is my current struggle.

  • Marymcb55

    My son has had type 1 diabetes since he was 9. He is now 29 and has been a Paralympic athlete for years. He has a very fine balancing act with his diabetes & being an elite athlete who has to train constantly. He has had to do much research & teach himself what works. Fortunately, he is managing quite well. Thanks for a great show on a disease very misunderstood & without much attention.

  • Connjohn

    Many of us can sympathize with the feeling of being “robbed of our real feelings” because of the popular notions about PMS.  When it was in the news, every time a woman was outspoken, she may have been accused of “getting her period” and discounted.  It’s maddening and can sometimes cause self-doubt — wow, am I really feeling this strongly, or AM I getting my period?

  • Michelle

    Thank you for such an honest and frank discussion about Type 1. My fiance was diagnosed in his late 20′s and while he is managing it well, it is a daily struggle and all the misunderstandings out there don’t make it any easier. 

  • Ted Quick

    I’ve been a Type 1 diabetic for 56 years, starting at age 5. Was really terrible for the first 7 years, no control at all. Finally found that taking 2 pills and 2 shots a day stabilized me incredibly well, until the FDA took Phenformin off the market. Anyway, I’ve been using insulin pumps for 18+ years now, and that WORKS.
    Rather amazing since my appendix was removed when I got to the ER,while falling into dabetic coma on the operating table. Then the doctor said I COULD live with it for 20 years if I was very careful and lucky…. and now it’s 56 years later.
    Hate the attitude my employers have taken, that they KNOW I’ll have trouble on the job because I’m a Type 1, but I haven’t had any there since 1979, BEFORE glucose meters and insulin pumps. Still fighting that battle while searching for a job.
    Thought that the ADA law that I helped pass in 1990 would make finding work less of a problem, but it doesn’t work. Oh well…..
    Look at:http://www.alldiabeticinternational.org/mystorytedmarch2007.html

    • dejahthoris

       I read your blog. The doc in the ER told me my son had strep the day before he went into dka too! He had NO symptoms of strep! The ketone breath smell- I even told them about that even though I had no idea what was wrong with him and had never even heard of type 1!! Doctors need to learn what type 1 is!!!!!

  • Rich

    Thanks for highlighting living with this disease on your program. My granddaughter, now almost 13, was diagnosed with Type 1 when she was 8. The last 5 years have been a real roller coaster.  The real problem is that her (probably normal) feelings of youthful invincibility have had a bad effect on her compliance. We try to remind her constantly to monitor what she eats and to test regularly but you can’t be watching every minute.  Having a pump has helped a lot, but when she started going through puberty a year and a half ago, keeping her blood sugar levels became a real crap shoot.
    -Rich

  • Scoopaloop

    Thank you SO much for helping give voice to those living with Type 1. My son was diagnosed 4 years ago at the age of 15. At a point in his life when most teenagers want nothing more than to just fit in with everyone else, my son was forced to learn how to live his life NOT being just like everyone else. At first, I was scared about whether he would be able to find his way and not give in to the disease. But within weeks I saw a strength and quiet determination in my son that I had never seen in him before. He became determined to do everything in his power to control the disease and NOT allow it to control him. Despite the headaches and lack of focus that can come with fluctuating blood sugars everyday, he continued to excel in the clasroom and shined on the soccer field as a team leader of the varsity high school team and a club team that won the state championship.   

  • Emlysk

    I’ve had type 1 DM since age 4, and I just turned 27. What an excellent and refreshing interview! Due to the diabetic camps I attended as a child, and my uncle and grandfather both having Type 1 DM, I have been blessed with excellent control and medical care. My mother and father are the greatest credit for that: my mother would simply be able to look into my 5.5 year old eyes and know immediately that 8oz of apple juice was needed–pronto! At the diabetic camp I attended, we would swim, and eat and do archery, and sit around the campfire singing songs about insulin shots. It gave me a long-lasting sense of normalcy. Sadly, my uncle was diagnosed long before such camps and support systems were in place. He passed away in March from diabetic complications at age 49. He suffered from many of the psychological challenges that persons with chronic illnesses manage. Because of some of those, he lost control of his blood sugar, and his health, and he is sorely missed.

  • PDXRower

    Great story and glad you have incorporated the hour-to-hour management and life issues into your book.   I’m 59 and have had diabetes for 18 years.  It came out of the blue – active, healthy lifestyle with no genetic history.   The condition started as type 2 with my pancreas still producing some insulin to type 1 when it shut down a few years ago.   Living with it does keep me on my toes, so to speak.    Both the lack of information about type 1 and the misinformation (especially from those who should know like the American Diabetes Association) is quite stark.    It was a challenge to find knowledgeable professionals who could help me understand how to regain control of those aspects of my life, but they are out there.    I have personally learned that managing diabetes is very possible and nothing to be afraid of. 
    Thanx for speaking up.

  • Susan

    This show spoke to this mother’s heart.  My son was diagnosed at two. He is now 28. However, growing up in a well-educated community with a highly rated school system in Westchester did not spare him from horrendous teasing by fellow students and ignorance on behalf of his teachers – one of whom deliberately withheld his “snack” at snack time until he finished his math, which he could not sort out because he was short circuiting from low blood sugar.  Parents called me after school to make me aware of this teacher’s actions according to the stories of their own children!  My son did not tell me, nor did he enlighten me about the teasing because, of course, at 6 years of age, this child would rather suffer the slings of his peers than report to his mom that he was being singled out and humiliated.  This is only one story in the face of growing up with a truly menacing and potentially fatal disease.  He is now 28, and very happily involved in the world of diabetes camps for diabetic children.

  • http://ketosisprone.blogspot.com/ Mikedbarker

    I’m a type 1b diabetic. It’s basically a diabetes of people of color that can straddle the line between T1 and T2.

    I control my diabetes purely by diet and exercise but I do have insulin, if needed, as well. When I first heard Kurt talking about T1, I thought about the humorous situations that come up between T1′s and T2′s. I was sitting at a lunch with a group of T1′s and they were happily munching away because they had computerized glucose monitors.  I couldn’t eat one thing. One of them slid the butter tray over to me, knowing that it was the only thing I could eat. “Life sucks”, she said as she popped a whole wheat cracker in her mouth.

  • Zager Evans

    Many of us don’t know what it means to be denied insurance coverage due to a preexisting condition.  Diabetes is one such disease that insurance companies used as a reason to deny coverage. 

    My wife has been on insulin (now four shots each day) since she was 12 years old, and she has always remained in tight control of her blood sugar.  Her control was so good
    that a blood test alone does not reveal that she is a diabetic. 

    Like any family, we needed insurance coverage, not only for trips to the doctor for less serious diseases and injuries, but also for catastrophic coverage, to prevent bankruptcy and losing our home in case of unforeseen circumstances.  And so, when my wife began a new job, we decided not to reveal to her employer that she had diabetes.

    Many months after starting her new job, I received a call from a doctor at the medical group.  “Is your wife on drugs?” the doctor asked seriously.  “No,” I replied.  “What’s going on?”  The doctor told me that my wife was in a semiconscious state.  I immediately explained to the doctor that my wife was a diabetic.  “OK,” he replied, “we know exactly what to do.”

     Fortunately, since the passage of the Affordable Care Act, no American – including diabetics – need live in fear because they suffer from a condition that was previously used by insurance companies to deny them coverage.  Now we can turn all our energies into living healthier lives and conquering whatever illness we might face.

    • tabitha

      When I was unemployed and tried to get private insurance the companies would basically laugh in my face. When I would say I was diabetic they would say they only covered type 2.

  • Bob

    On my first day of college in 1971, I returned to my dorm after class and found an EMS crew treating a boy passed out on the floor. Later I found out the student was diabetic, he was away from home (and parental restrictions) for the first time, he’d partied the night before, and he died on the way to the hospital. Three years later when I was diagnosed with diabetes,  I remembered him. And now as a volunteer educator at a camp for kids with diabetes, every year I tell the boy’s story. The kids and I talk about diabetes and growing up without pulling punches, minimizing temptations, or pretending we’re always going to do the right thing. Together we figure out how we’ll survive and succeed in spite of this disease. And we vow we will never be the boy on the floor. 

    • dejahthoris

       You tell kids at camp about a guy who DIED in college? That’s great! I hope to God you were not at my son’s d camp!

      • Diabetic

        Kids need to know what can happen. They must be given the tools to manage their diabetes and be independent.

      • Bob

        Would you rather your son found out on his own what this disease can do if he follows the same path? I tell kids about a guy who DIED BECAUSE HE DIDN’T CONTROL HIS DIABETES. I and the other 15 – 20 adult counselors with diabetes are there to show that life with diabetes is good – if you do what needs to be done. I hope to God someone has the guts to tell your son that. 

  • Sue

    It all came back to me in a rush – over 20 years ago, finding my supervisor on the floor having a seizure.  He was still able to talk, amazing, and told me to open the credenza behind him and get out the can of soda he kept there and to give it to him.  He was flailing but I managed to nearly straddle him as I poured soda down his throat, fortunately not choaking him.  His seizure settled down and we found ourselves sitting on the floor, our shoes had flown off, and his necktie was ruined.  He had never told anyone he was diabetic, afraid it would affect his employment. 
    Others found out, after that incident, but I became his accomplice. We would go to lunch (watched what he ordered and traded if necessary) and worked with his almost daily ups & downs before it stabilized more.  I have tremendous sympathy for those who deal with diabetes, it’s daily constant maintenance.  He said it was like being locked in a cage.  His medical insurance denied the pump.  For me, he is a kind man but sometimes it was “Dr Jekyl Mr Hyde”  he spit food at me, fired me, cursed me, and didn’t remember a thing afterwards.  His wife has suffered more, but in the end, it is just so wrong that a cure hasn’t been found for this disease. 

    • Ted Quick

       Probably the insurance company SPECIFICALLY says in the insurance plan documents that they will NOT pay for any insulin pumps SPECIFICALLY. If not they can NOT deny a claim for a pump under any circumstances, since it is an acceptable normal treatment for a Type 1 diabetic.
      He needs to ask them to show him where in the insurance plan papers that they don’t pay for an “INSULIN PUMP”, no more, no less! That’s the law, at least in the USA.

  • Edzdroid

    Type 1 diabetes has to be one of the worst chronic conditions to have. Its not because of its high mortality, best case scenario its it takes 15 years off your life, but makes those last years almost always with paralysis, least limbs, kidney failure, blindness and the inability to do what must consider normal things…… The completete hopelessness if the situation
    The worst part its the solitude, the lack if knowledge or understanding, failed marriages, list relationshipsall because none knows what diabetes is. I blame type 2 diabetics and the institutions that used the”diabetes” name to make a profit.

    I’d much rather have cancer…. It may kill you quicker… But many times if not most, it can be cured.. Or AIDS.. wow…much rather AIDS, the cure, support networks, steroids Type 1 isaw am autoimmune just like AIDS.. No benefit concerts our ribbons for type 1.just suffering, lonely ness… and by them, thankfully death

  • Ralphsherman

    I enjoyed the diabetes segment.  Education including the risks and Rx of hypo and hyperglycemia are not solely between patient and endocrinologist,but rather a team
    that includes diabetes educators and dietitians,from the onset.  This makes a tre-
    mendous difference !

    • RCYoung

      Dr. Sherman!! So great to see you here.. thank you so much for your great care of Laur. 
      It does take a village. Or a team. 

      Robin

    • dejahthoris

       Many doctors and nurses have no idea what Type 1 diabetes is, even in the ER. It is terrifying to us parents. It is very dangerous for children with t1dm onset who are in dka, who are misdiagnosed. I had to make two ER trips (the first trip they gave him a strep!!! test and sent us home) and two calls the pediatrician (who told me to give him an antacid) Thank God the second trip to the ER the doc on call had a t1dm daughter and knew what it was right away. I had no idea what type 1 even was when he was dx.  It is also dangerous for a t1dm child who has the flu and high ketones and goes into the ER, when the professionals there do not have the slightest idea about the basics of the care of a person with t1dm. The ADA and JDRF do a great work, but I think the most important thing they can do is educate medical professionals on the basics of how to diagnose T1dm, or at least make them aware that is a condition.

      • http://www.alldiabeticinternational.org/ Ted Quick

         Very true, but at least it has improved somewhat since I was (finally) diagnosed with Type 1 diabetes on April 9, 1956. BTW it was Mom’s birthday). Anyway I’d suffered all the symptoms for a week or so, but no one in the family knew anything about diabetes. When they took me to the doctor, a GP, several days before he said to keep me out of the sun and give me salt pills, I supposedly wasn’t tolerating sunshine well. Then the morning of 4/9 I was in such extreme belly pain that my parents finally too me to the ER. Since the first doctor that saw me there was a surgeon he diagnosed me as having appendicitis, but while he was operating I went into DKA coma.
        In the meantime Dad found a brand new pediatrician who came in and put me on insulin immediately. He only knew about diabetes because he’d just graduated, and Type 1 (then known as Juvenile Diabetes) had only been accepted for 4 years then.
        After giving me, a small 5 year old, 1050 units of insulin I finally started to recover, but needed electrolytes replaced, since they were almost gone by then. Woke up 2 days later while my parents were on death watch, since I wasn’t expected to survive.
        So YES, things are better in some places where the doctors know enough to diagnose correctly.

  • Stephen Henrie

    Like the author, I too was diagnosed out of the blue with Type 1 in my thirties. I have been living with it for about ten years so far. No one else in my family, except for a distance cousin, has it so it was truly a surprise.  The acceptance process was short though painful. I remember crying the first time I went into a supermarket and seeing all of the foods made of carbohydrates, which I would have to limit, and accepting that I would now have to check at least one box on medical forms as “Yes”, which I had never had to do before.  I have since come to understand how to live with it and incorporate it into my life; because honestly what is the other option?

    While the hypoglycemic moments that have been described by the author and others are a challenging to deal with and scarey situations for sure, the long terms affects of hyperglycemia by not managing ones blood sugar are even more so.  Complications like loss of vision,  circulation issues which can lead to infections and amputations of the extremities, nerve damage which leads to loss of feelings in the body and things like erectile dysfunction in men, kidney failure, heart disease and the need to keep cholesterol abnormally low; just to name a few. I fear those things more than anything else so I actively manage my sugar as best I can but within reason.

    However, I don’t see a lot of people commenting on just how invasive the ever present management of this condition can be.  As a runner and someone who is physically active, I do the p90x workout daily, I have to plan in advance for keeping my blood sugar high since physical activity drives the sugar low, which can lead to a dangerous situation if I am running for long distances or in a remote location. Of course the challenge is to not be too high and to plan it right so that when I am done my sugars are somewhat back to normal without getting too low.  So unlike others around me,  I  have to plan on having adequate supply of food and the emergency can of sugary soda on hand to keep the blood sugar high for longer periods of activity. Falling low is such a debilitating physical feeling that can also be challenging to the ego; I have had to learn to let go of always being able to perform at optimal levels because the management of the sugar levels is inaccurate at best when physical activity is involved; even though I wear a continuous glucose meter most of the time it is always challenging. 

    This can be a particular blow to the ego when falling low occurs while having sex. Nothing breaks the mood more than having to tell your partner that you have to stop what we are doing because I have to go get something to eat and then wait another 20 minutes or so before continuing; unless of course the low moment was so severe that I can’t go on and need to rest for a few hours.  This has happened more times that I would even care to admit and is quite a shot to the male ego and leaves my partner not feeling so great either.

    The other aspect that I rarely read about from others is the strong correlation to depression feelings with those that have Type I diabetes. I have researched this, and there are some studies that have tried to find the connection, but most seem to be inconclusive other than to state there is a strong correlation. From my own experience, I can say that hypoglycemic conditions tend to make me have more depressive periods that I ever did before I was diagnosed with this condition.  While I move through those cycles eventually, the emotional “low” is just as salient as the physical “low” brought on by the lower blood sugars, so it makes me wonder if there is more of a connection between the insulin levels that are being released at a constant rate in my body from the injections vs those of non-diabetics who do not always have insulin at the same levels since the body continually adjusts it based on food intake and other conditions.  All I can say is that the depressive feelings and the mood swings can be just as challenging to deal with; both for myself and those around me.

    All that being said, as far as chronic diseases go at least this one is manageable. A year ago, one of my college roommates and a friend since we were both 18, passed away from pancreatic cancer.  It only took 5 months from the time he was diagnosed until when he passed; and it was particularly sad because he had just gotten married only a year earlier. As I spent time with him during his last days, I couldn’t help but have mixed feelings about the overall situation as here we both were being afflicted by problems with our pancreases, yet as long as I stayed vigil and focused on managing my condition I could continue to live a somewhat normal, though intrinsically more complicated life. However, there was nothing he could do to change his terminal situation. Nothing strips away the beliefs in absolutes like an emotionally complicated situation.

    I am happy to discuss any of this further with anyone that is interested.

    • dejahthoris

       Thanks for your insight- this is no doubt the future of my son who is a teen. He was dx out of the blue as you said. None of us had ever heard of type 1, no one I knew had it. We do not limit his carb intake however. He can eat whatever he wants whenever he wants, we just cover it with insulin. 

      • Stephen

        Of course you can cover all the carbs with insulin, however, I get concerned with the amount of insulin in my body at any given time ( with both long term and short term injections ), so I try to minimize it as well; plus it leads to lower overall body for me so it is a personal health decision.

        • http://www.alldiabeticinternational.org/ Ted Quick

           Another problem with chasing large amounts of carbs with insulin is tricky because of variations in the food. For instance when eating fruits or vegetables you don’t know for sure how many grams of carb each apple contains, short of weighing it as well as subtracting the core if you don’t eat it. Even packaged goods are allowed to vary by 10 or 15% (forget which) from what the label says, plus or minus.  Add up enough items and control can get iffy REAL fast.

  • tabitha

    I am type 1 diabetic I’ve had it since I was 19, I am now 34 years old. I hate when I tell somebody I’m diabetic And they say how you’re not fat? It is sad That type 2 is such an epidemic That people automatically assume That is the only kind.

  • Bob

    As tough as this disease is, I think we type 1 diabetics have the easy part. I think the people who truly suffer are the ones who love and care for us, who want us to hang around long enough to see another sunrise. I heard that in Robin’s voice as she told about life-saving 2:30 am butt dials and insulin-denying arrests. I read it in Kurt Andersen’s character Waverly as she asks her grandmother, “Grams, you look kind of pale… You want me to get a meter?” It’s there in these many posts and in the eyes of my wife and daughter and so many other people who care but can do nothing. For them, diabetes is “Rear Window.” They’re Jimmy Stewart watching from across the yard as Raymond Burr returns to his apartment, sure to catch us doing something that could hurt or even kill us – and there’s not a thing they can do but watch. 

  • Dcstojda

    Great story!  I agree with Mr. Andersen that everyone in a diabetic’s life needs to be aware of how to care for their loved one in times when the loved one can’t help themselves.  This happened to me (Type 1, diagnosed at age 13) one morning.  My son, who was 10 at the time, came to my rescue.  I had told him everything about diabetes and he was able to recognize a crisis situation where my blood sugar was too low for me to help myself out of it.  He ran to get juice, but I was not aware enough to drink it.  He, calmly, phoned 9-1-1 and was able to calmly explain the situation.  When the paramedics arrived, he calmly explained the events of our morning so the paramedics could get right to work.  Unfortunately, I had to be taken to the ER.  My son was not old enough to come with me, he was told, and he went to a neighbor’s house while I was taken in the ambulance.  When I we fully revived later in the ER, the nurses gave me a message from the EMTs.  They specifically asked that I be told what a wonderful job my son did during the crisis.  That he remained calm, responded appropriately,  spoke clearly and gave all the important information.  I am told the 9-1-1 operator also conveyed the same sentiments to the EMTs.  I feel it is important not to hide diabetes, but, in fact, talk about it with everyone.  It’s a part of who you are, like it, or not.  

  • http://twitter.com/Busted_Pancreas BustedPancreas

    Very interesting.  I am a T1 and constantly amazed at the amount of misinformation out there about diabetes.  I often find that I just don’t tell people I have T1 diabetes because I don’t feel like going into the whole explanation of how, no, I didn’t get it from eating too much sugar or not exercising. I can’t even begin to count the number of times, upon finding out I’m diabetic, someone says something like, “Oh, but you’re not fat. How could you have diabetes?”  Or, “But you eat so healthy.”  It’s even more frustrating when the misconception comes from medical professionals.  That’s REALLY frustrating.  I wish more of  a discussion was had around the different forms of diabetes out there (there are actually quite a few different kinds, including type 1A, type 1B, MODY, type 2, LADA (a slow-developing form of T1A that appears in adulthood), gestational, and diabetes resulting from injury or illness involving the pancreas.  It’s really a cluster of conditions that scientists are still striving to understand. 

  • Don

    As a Type 1 diabetic I found the comments familiar and interesting.  I first developed diabetes at the age of 15 and have been on insulin ever since.  I have now had it for 64 years, which should give me something of a longevity record.  Most people have no awareness of the effort it takes to balance your food intake and exercise, vs. your insulin intake.  I take three injections a day and test at least four times a day.   I have seen a lot of progress over the years.  When I started there were no glucose test meters, only a tablet which you dropped in a test tube with your urine sample, which would go from blue, for no past sugar, to orange which indicated more than 2% sugar content.  This information was looking at what had happened.  Now one can do real time testing and adjust accordingly.  There were no disposable plastic syringes, and only glass ones were available which had to be boiled daily.  The heavy gauge needles were repetitively used and had to be sharpened by the user.  The insulin was not as uniform in strength and purity and no insulin pumps were available.

    I reflect on this just to let the current diabetics realize how much better things are now than before.   Still the balance between highs and lows goes on and requires constant attention.  For the first 50 years I had been complication free.  In more recent years I have developed some age-related problems with my eyes and my balance.  I can’t overemphasize the importance of trying to maintain control.  With no functioning pancreas there can be wide ranges in the blood sugar level, but one can only do the best he can.  I’ve outlived several of my diabetes specialist doctors.

  • hotep1978

    Both one of my sisters and I were diagnosed with type 1 diabetes
    as adults.  In trying to keep tight
    control of my blood glucose levels, I have had a number of seizures and
    hypoglycemic episodes.  When people
    assist me in rectifying the problem, I try to crack jokes to lighten the mood; unfortunately
    they usually do not laugh.

    One episode, I believe, kept me from being rehired at a
    prominent tutoring company.  Another
    resulted in my receiving a write-up for missing a 600 am shift.  My mother told me during one emergency room
    visit (after my eight and five year old nephews managed to guide me home on
    public transportation during an episode), that the ER staff automatically
    assumed that I overdosed on an illicit drug instead of checking my medical
    bracelet.  After a recent visit to my
    doctor, I found myself in the emergency room because the medical professionals
    at the clinic did not know how to treat hypoglycemia.  My former roommate, who is an EMT, could not
    figure out how to load my glucometer and got into a fight with me during an
    episode.  Mind you, this was the only
    time I have been told I was combative during an episode.  I usually do not have the energy to put up fight,
    let alone protest anything when I am hypoglycemic.  However, after that, he treated me like a
    child that could not handle herself.

    Because the minority of diabetics are Type 1 and the growing
    epidemic is among Type 2’s, the ignorance of the public does not surprise
    me.  And because there are so many
    diseases and disorders an individual can have, I do not expect people to know
    specifically how to handle hypoglycemia. 
    My mother, elementary-aged nephews (their mother is the sibling that
    also is a type 1 diabetic), and my boyfriend all know what to do when my blood
    glucose level drops.  The realistic
    expectation is that those close to diabetics know how to handle the
    hypoglycemia and that employers be sympathetic to diabetics without being
    demeaning or sappy and without infantilizing or shunning them.  I do not need the sad violins, nor do I need
    disciplinary actions taken against me.

    One last story: the first of many seizures I have had around
    my boyfriend happened in the wee hours of the morning.  Despite my speech being almost
    unintelligible, I was able to tell him to go to the market (which fortunately
    is opened 24 hours) and purchase a tub of icing.  (I had a tendency of not keeping sweets in
    the kitchen.)  He remained calm, sped to
    the market, bought the icing, returned to my apartment, and proceeded to feed
    me the icing.  Time passed, the icing was
    consumed… and nothing changed.  “What
    kind of icing is this?”  I asked.  He looked at studied the label.  “Sugar free,” he sighed.  The only thing I could do was laugh.  In his calm panic, he accidentally grabbed something
    I did not even know existed.  The
    glycemic index on the sugar-free icing was so low that it took almost an hour
    for my blood glucose level to rise to where I was functional.  I now keep real icing in the refrigerator and
    fruit mango-flavored jelly cups in the dresser near my bed.

Robin and Jeremy

Robin Young and Jeremy Hobson host Here & Now, a live two-hour production of NPR and WBUR Boston.

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