Type 1/Type 2 Conversations: Friends and Family

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Laddie_Head SquareLaddie:  When I was diagnosed with diabetes in 1976, there was no issue about whether it was public or private. I was new to Minnesota and the only people I knew were either family or co-workers. All of the family knew of my diagnosis and because I missed a whole week of work, everyone at my job knew about it also.

Although my diabetes was common knowledge, my self-care was private. It wasn’t private because I was hiding it. It was private because there was no blood glucose testing and I used Diastix strips to test my urine when using the toilet. In those days I only took insulin once a day and that was in the privacy of my bathroom along with my shower and teeth-brushing.

Life changed as we bought a house, made friends, and had children. My diabetes regimen became increasingly complex with blood glucose testing and multiple daily Doorsinjections (MDI). A private life with diabetes morphed into a secretive life with diabetes. When I first met people, I didn’t see a need to disclose the fact that I had diabetes. But all of a sudden I had known them for 5, 10, or even 20 years and it seemed uncomfortable to say “Hey, you know what. I’ve had diabetes ever since I’ve known you. I take shots and test my blood many times a day and I’ve hidden it from you.”

It was easier to stay in the closet than deal with that sort of awkwardness. About 10 years ago I had a big coming-out party while playing bridge with a bunch of golfing friends. They were terrified that I was having a stroke and although I couldn’t talk, I was at least able to flash my medical alert necklace. Projectile vomiting of orange juice followed by a parade of paramedics and police pretty much blew my secrets to smithereens.

Very shortly after this episode, I got a pump and became increasingly comfortable with my public persona of someone with diabetes. Most people in my life these days know about my diabetes, but some of the “I have known them forever, but don’t see them very often” people don’t. I still don’t know how to tell people that I’ve known for 30 years that diabetes preceded our relationship…. I am not embarrassed to have diabetes, but I am embarrassed to have been so secretive.

Although the “stigma” of diabetes is a big deal these days, especially the blaming of Type 2’s for “causing” their disease, that wasn’t an issue when I was diagnosed. The terms “Type 1” and “Type 2” were just emerging in the 1970’s and weren’t commonplace until the World Health Organization adopted that terminology in the 1990’s. There was no diabetes epidemic and my secrets were not an attempt to distance myself from the “Other Kind”. My secrets were a reflection of my somewhat secretive nature and occasional social awkwardness.

Now that I have been blogging for over a year, I am for the most part “out there”. Most friends know about my blog, but only a few are regular readers.  Why should they be?  If I didn’t have diabetes, I would for the most part ignore it and keep it in the category of “that’s not my problem”.

Kate, as someone with Type 2 diabetes, you have a more “invisible” illness than I do.  How does your diabetes present itself in public?

Kate_photo_RKate:  When I think back to my type 2 diagnosis, I remember being confused and upset. I received no education and was sent out the door to figure it all out for myself. It never occurred to me to hide my diagnosis from anyone.  I knew so little about diabetes, of any type, and I didn’t have any idea that there was stigma attached to my disease. I guess you could say that I was blissfully unaware. I was probably similar to a big dumb dog, bouncing around, tail wagging, oblivious to what anyone might think. Just doin’ my thing. I didn’t hide my diabetes at work but also didn’t feel compelled to tell anyone. I was happy to share my ideas and findings about food etc. should someone ask. (I probably went on too long from time to time.  I seem to remember a few glazed eyes.)  I do remember a few slowly shaking heads and looks of concern when someone learned of my diabetes. I didn’t like that at all. Don’t pity me!

As time went on and I began to do research about how to deal with my diabetes, I began to see the stigma that can be attached to diabetes. Every website I visited or book that I read told me that I needed to lose weight. Even my doctor told me “just Dog_Goofylose some weight”. Those feelings of guilt began to creep in and my weight issues that had plagued me for most of my adult life started to affect my mood. But for some reason, even then, I didn’t feel that I needed to hide my diabetes. In fact, the more I learned the more I wanted to educate others. Comments made after articles or blog posts that blame T2s for being fat and causing their condition can still inflame me to the point of apoplexy.  I have to speak up. I have to try to educate others. I can’t be silent.

The only time that my diabetes is more public is when I’m eating out at a restaurant. I may test my blood sugar to see what level of carbs I can safely consume (like bread or pasta. Usually none). I nearly always make food choices based on my diabetes. I will decline dessert, and when pressed to “go ahead and have some!” I’ll kindly explain why that isn’t a good idea for me. I try not to say that I can’t eat something but, instead, will say that I choose not to for my health. It can be glaringly apparent when I eat the middles out of a sandwich with a knife and fork. That type of activity can bring questions from others and I try to use those situations to educate.

I’ve gone through “seasons” with my diabetes. From being unaware to being a better educated patient; one who wishes to do what she can to educate others. I can understand why others may not choose to let their diabetes be known and I respect that decision. We each have to do what feels best for us.

We’ve talked a lot about friends/work, but what about our family?

Laddie_Head SquareLaddie:  My husband and I don’t talk about diabetes much. He’s not terribly interested in medical things and I’ve always been a “take care of it myself” person. Fortunately he has always been a master at knowing when I’m low. For many years whenever he asked “Are you OK?”, I would say that I was fine. He quickly learned that “Fine” accompanied by a blank stare was not fine.

My Dexcom G4 CGM has set back our diabetes relationship because in the almost two years that I have used the system, I have not once needed help with a low blood sugar.  With my low alert set at 70, I have been warned of lows before they have become too severe for me to handle. (Yes, Medicare, you need to pay attention to this!)  Except for living in a mostly low-carb household and occasionally reading my blog, my husband has been spared involvement with my diabetes. He may be getting out of practice.

As a stereotypical “successful Type 1”, I have taken complete responsibility for my self-care, warts and all. My biggest fear is the day when I am no longer able to be in charge. I have not been hospitalized since my diabetes diagnosis except for childbirth and I shudder at the nightmare hospital-stories of many Type 1′s. If I ever have a planned hospitalization, I will work hard to train my husband in Diabetes 101. But we are totally unprepared for an emergency hospitalization. It is not fair to either of us that I have allowed him to be so uneducated.

Growing up, my two sons knew little about my diabetes. I took shots in the bathroom and did the same with BG testing once it replaced urine testing. Diabetes was always there but in the pre-MDI days, it didn’t demand a lot of attention. As they got older, they were too busy to notice much of what I was doing.  Reading my blog has been a total eye-opener for them.

I did not worry about my sons getting Type 1 and never once pressed a Diastix strip into a wet diaper or tested their BG. Statistics indicate that neither they nor their children will get Type 1, but I see too many multi-generational diagnoses in the DOC to be totally confident. My husband’s father had Type 2 diabetes and statistically my sons have a higher risk of being diagnosed with that rather than Type 1.

I don’t come from a large family and I have been spared helpful comments from distant relatives about okra, cinnamon and losing weight to go off insulin. With a sister who has Type 1 and a father-in-law with Type 2, my family is more educated about diabetes than most.

Kate_photo_RKate:  It’s interesting that discussing my diabetes with my family doesn’t happen all that often. Well, except for Ray. He takes the brunt of my frustrations and railings. He’s a good man to put up with me when things aren’t great. I haven’t made a habit of “educating” my extended family, it’s more that I teach by example. They have seen me forgo certain foods at family gatherings or have just a bit of something yummy (like stuffing at Thanksgiving!)  I rarely have had “diabetes police” moments.  When asked if I can eat something I simply say, “If I want to and am willing to deal with the aftermath, then yes”.  My family knows about my recipe tweaks and use of almond flour. They know that I’ve made drastic changes to how I normally eat, but they usually aren’t there to see it. When it comes to the holidays I try to keep things “normal”. I still make all the foods we traditionally eat and adjust what I consume.  Sometimes that’s so hard to do!  Sometimes I don’t succeed.

Thinking back over how I fed my family as they were growing up can lead to some feelings of guilt. Yes, I fed them mac and cheese from a box. Yes, they had chicken nuggets and pizza. Yes, we ate too much processed foods. Yes, we were a normal family. I can’t/shouldn’t beat myself up about it. I didn’t know then what I know now.  Here’s the kicker: now I DO know that a lot of those processed foods aren’t so good for us, and yet I find myself falling back on those standards when my grandsons are here.  Should I be the “tree bark Grandma” who only feeds them “that healthy stuff” or should I be the “fun Grandma” who lets them eat what they want? I have found a happy medium, I think. There is always at least one veggie with every meal and often fruit for dessert.  Sugar free popsicles are in my freezer at all times and mixed nuts, mini bell peppers and cheese sticks are favorite snacks for them. Yes, I still make mac and cheese sometimes and I’ve been known to buy a pizza but I’m more aware now of the food I “push”. My family is aware of my diabetes but I try not to make it the only thing they see.

Laddie_Head SquareLaddie:  As a grandmother, Kate’s comments about being the ‘tree bark Grandma” versus the “fun Grandma” really hit home. I have recently tightened the reins and quit buying junk cereals and feeding grandchildren pizza every time that they sleep over. (Don’t tell their mother that although they’re eating more nutritious foods at my house, I still let them watch TV….)

Kate’s history shows more openness about diabetes than my past. I suspect that it is more related to personality differences rather than our type of diabetes. Next time that I find myself retreating into the closet, I’ll think of Kate and envision a big, goofy dog who has no secrets.

The topic for our fourth Type 1/Type 2 Conversation next Tuesday is Food. This reflects the impossibility of discussing any type of diabetes without food facts, myths, and opinions coming to the table. Please join us.

Conclusion: Gluten-Free Trial

Laddie_Head SquareIn mid-June I embarked on a 3-week gluten-free trial.  Previously I had asked my endocrinologist whether she thought a gluten-free diet might help with my clustered autoimmune issues.  She surprised me by suggesting that I give it a try.

Although I began the trial doubting that GF would make a difference in my health, I wholeheartedly committed to following the diet strictly for 3 weeks.  One week into the diet I posted an update that I didn’t think it was having any effect on how I felt or the appearance of my inflammatory skin problem.  At the end of 3 weeks, my opinion had not changed.

I don’t think that my eating plan for those weeks would have been a sustainable diet for the rest of my life.  For the most part I followed my normal lowish-carb diet and just avoided bread, crackers, and other no-no foods.  My only GF-adapted food was a bread that was edible when toasted and slathered in peanut butter, but disgusting otherwise.  I know that there are wonderful GF recipes and foods out there, but I didn’t bother looking for them.

I am relieved that gluten-free is not part of my future.  Initially it made following a low-carb diet easier because no cheating was allowed.  Over the long run it would have been complicated because many wheat substitutes are things like tapioca and rice that are not kind to blood glucose levels.  Similarly many healthy substitutes require a lot more interest in planning, chopping, and cooking than I possess.

In my opinion the gluten-free world is a continuum with those medically diagnosed with celiac disease on one end and faddists who insist on a gluten-free entree before emptying the bread basket on the other end.  In between are people with varying degrees of gluten sensitivity and differing opinions about the value of a gluten-free diet.  If you absolutely require GF due to celiac or if you just think it makes you feel better, then go for it.  I have no reason to doubt you or judge your decisions.  I know a couple of people who definitely feel better avoiding gluten-containing foods and I’m glad they have found something that improves their health.

On Monday I was interested to read a blogpost about a gluten-free trial by another person with Type 1 diabetes.  Sarah of Coffee & Insulin had not felt well for months and tests for GF Experiment Flaskceliac, gastroparesis, and other ailments had come up negative.  Responding to Sarah’s frustration at getting no answers, her doctor encouraged her to “Experiment. Only you know how you feel. A patient knows their body far better than a doctor does.”  One week into her GF trial, Sarah felt immeasurably better and plans to continue on the diet.

Was Sarah’s trial a success and mine a failure?  Absolutely not.  We both experimented and happened to get different results.  I hope that she continues to feel better on a gluten-free diet and I am glad to not add more dietary restrictions to my life.  In some ways I think that the biggest win from this whole thing is that both Sarah and I have doctors who were willing to admit that medical science doesn’t have all of the answers and that patient experience and opinions have validity.  Sounds like a win-win for patient empowerment.

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Previous posts pertaining to my GF trial:

Gluten-Free

Gluten-Free Update

Type 1/Type 2 Conversations:  Diabetes in the Great Outdoors

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Kate_photo_RKate: To continue our discussions between people with type 2 and type 1 diabetes, I thought I’d talk with Laddie about dealing with diabetes while enjoying the great outdoors.  Living in the middle of a pine forest makes it easy to enjoy the peace and loveliness of “the outdoors”.  I love camping and hiking in the woods that are a stone’s throw from my home.  Ray and I enjoy fly fishing, which we have to travel away from home to do.  I’ve blogged before about my adventures when camping with diabetes but I’ve never given a lot of thought to what it would be like to camp with type 1.  Well, my last statement isn’t exactly true.  I have thought about the fact that insulin must be kept cold but I never really thought about how that would work or what level of stress that would add to the camping experience.

Camping with type 2 is really quite easy, at least for me.  In fact, it’s easier to control my blood glucose while camping than it is at home.  Why?  Because what I eat affects my blood glucose more than any other thing I do.  Yes, I take oral meds and yes exercise can lower my blood glucose, but if I overeat or eat too many refined carbs, my blood glucose will spike and there’s not a whole lot I can do about that.  When I’m at home I have a whole smorgasbord of food to choose from, not all of it good for me.  When camping I can only eat what I bring with us and I try, very hard, to limit the “bad stuff”.  It’s still easy to eat too much while camping but I find that the fresh air and peaceful surroundings make it easier to focus on things other than food.  I have been known to have fasting readings in the mid-80s while camping when here at home they are running in the 130s. (We currently can’t camp due to fire restrictions and my glucose could sure use the help!)

While spending time in the outdoors I am always careful to check my glucose levels, I get lots of exercise and I’m usually eating more healthfully.  I’m also much more relaxed, which helps with blood glucose as well.  Can I imagine what it would be like to add insulin to that mix?  Not really.  Intellectually I can understand what would need to be done, but emotionally not so much.  The reality of dealing with type 1 (or anyone who uses insulin, really) is beyond my ken.  (I have always wanted to use that word in a sentence, ever since I first saw The Sound of Music!)  I greatly admire my T1 friends and am always impressed with how they handle everything required to control their diabetes.  What’s it like away from home where there’s no conveniences?

Laddie_Head SquareLaddie:  Kate is correct in stating that preparing for a Great Outdoors adventure is very different for someone with Type 1 diabetes compared to most people with Type 2.  Although we can argue about which type of diabetes in worse in the long run (they’re both the “bad” kind!), in most cases there is little doubt that Type 1 is more dangerous in the short run.  Going on an outdoor expedition ill-prepared can quickly become a life-or-death crisis for someone with Type 1.

I have never had an emergency diabetes situation while in the Great Outdoors and I would attribute that to a combination of thorough preparation and a healthy dose of luck.  When I venture out into nature, I work hard to ensure that I am prepared for almost any contingency.  I make lists.  No matter how many times I have stocked a backpack, I don’t trust my memory.  I use a list and I check it twice.  I figure out what supplies I need and I double or triple that.

Luck has come to my aid a few times and I have been an attentive pupil.  Many years ago I  learned that multiple plastic bags and tape are not sufficient to keep a Medtronic insulin pump dry while whitewater rafting in Canada.  Fortunately it was a cheap lesson because the pump survived with no water damage.  I have been low and run out of glucose/food twice on long hikes and both times the trailhead and car with supplies were over the next hill.

The two scenarios that can quickly become an emergency for me are severe hypoglycemia and an absolute lack of insulin.  To prevent severe hypoglycemia, the first thing that I do is carry glucose products in both my pockets and my pack. Multiple rolls of glucose tabs, gummy fruit snacks, juice boxes, granola bars, and a bag lunch are my standard fare for day hikes.  Secondly, I always carry my Dexcom CGM and pay attention to its warnings of lows.  My meter is easily accessible on my belt and I am proficient at testing while on the go.  Third, I use temporary basals as much as possible to minimize insulin on board.  Fourth, I carry a Glucagon kit and my hiking companions know its location and how to use it.

It is unlikely that I will have a problem with my insulin delivery, but this could become catastrophic very quickly.  As a pumper using short-acting insulin, I start feeling sick if I go without insulin for 3-4 hours.  Periodically on diabetes forums someone asks how long a person with Type 1 can survive without insulin.  Will Dubois at Diabetes Mine has a good post on the subject and concludes with the answer of a few days to 1 or 2 weeks.  How quickly would I feel so sick that I could not longer hike?  Probably 5 to 8 hours.

To prevent an insulin emergency, I always start my adventures with a full or nearly-full reservoir in my pump.  Secondly, if the battery level on my pump is not 100%, I put in a new battery and always carry a spare.  Third, I carry syringes in both my meter case and backpack.  I always pack back-up infusion sets, a reservoir, and a vial of insulin.

Kate mentioned her concern about the proper storage for insulin if and when it becomes part of her diabetes regimen.  Frio cases are the easy solution.  The soft pouches work with evaporation and only need a soaking in water every few days to provide adequate cooling for insulin.  They puff up when “charged” with water and their Pillsbury Doughboy chubbiness helps protect insulin vials from breakage.  They also come in sizes for pens, pumps, and other supplies.

Those of us with Type 1 have to be more neurotic in our preparations for life than those with Type 2.  I don’t complain about diabetes very often, but sometimes I wish that I didn’t have to be so darn prepared all of the time.  At the same time I am thankful for my pump, meter, and CGM that allow me to experience the Great Outdoors in relative safety.

Kate_photo_RKate:  I’m humbled.  I’m impressed!  Laddie, your preparations for a day of hiking are astounding.  I always knew, intellectually, how much preparation is involved for going anywhere with type 1.  I’ve read other blogs and Facebook comments about packing for a trip and needing to take multiple sets of this and that.  I just never transitioned that over to being on a hike or camping.  You always have to be prepared!

One thing that stands out to me is the fact that type 1 carries with it an immediate threat of serious issues.  Someone like me who has type 2 and does not use insulin (or any medication that can cause severe lows) doesn’t have those worries.  I’ve always known this, but this conversation has really brought it to the forefront for me.  There is no “worse” type of diabetes but, in my opinion, type 1 is a lot more serious in the short run.  Your need to control your blood glucose cannot be ignored.  I am not someone who ignores my diabetes control but if I ever do I’m not going to die.  That’s serious stuff.  In the long run, we aren’t much different.  People with all types of diabetes need to be aware of the fact that poor glucose control will most likely lead to serious complications. (It’s important to remember that even if we do control our diabetes the best we can, we may still experience complications and that is not our fault!)  As a type 2 I intend to continue to pay attention and do everything I can to keep my bg as close to normal as I can.  I’m afraid that many type 2s don’t do that.  It’s easy to forget what can happen when we aren’t faced with the immediacy of type 1.

I think it’s so cool that both of us love the outdoors, that we have fishing pictures that are nearly identical and that we do the things we love despite our diabetes.  We are different but we are the same.

Laddie_Head SquareLaddie:  Well said, Kate.  I don’t think that I have anything to add to our discussion except visual proof that people with Type 1 or Type 2 diabetes can look equally goofy in fishing hats!  (If we were men, we would also have to argue about whose fish was bigger….)

 

Gone Fishing_2

Kate_photo_RKate:  One last thought: I think it’s important to point out that neither Laddie nor I hesitate to get out there and do the things we love to do, despite our diabetes.  Don’t let diabetes keep you from living your life.  It can be difficult and frustrating but it’s worth the effort.

Be sure to come back next week when our conversation will be about Friends and Family.  If you missed our first conversation about weight, check it out here.

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This post was originally published on July 15, 2014 on Kate’s blog, Sweet Success: My Life with Type 2 Diabetes.

Link–Type 1/Type 2 Conversations: Diabetes in the Great Outdoors

Laddie_Head SquareFor our second Type 1/Type 2 conversation, Kate has chosen to talk about one of her greatest loves: spending time in the Great Outdoors.  Although I don’t camp (if there is no bed, I don’t go!), I am an avid hiker and regularly explore the mountains and deserts of Arizona.  One thing Kate and I quickly learned in this conversation is that although it is important to learn from and respect people with other types of diabetes, we do have some significant differences in how we navigate our lives.

Last week with our first discussion Type 1/Type 2 Conversations: Talking about Weight, Kate and I published the post simultaneously on both of our blogs.  Very quickly we found that we over-saturated Facebook and Twitter with promos and links followed by favorites, retweets, likes, and shares.  This week we are trying a different strategy.  Because this is Kate’s topic, this conversation will only be published on her blog today. There are two advantages to this.  First, we’ll spare the DOC a barrage of duplicate communications.  Secondly, it will give readers of my blog the opportunity to explore Conversations_FinalKate’s blog – Sweet Success: My Life with Type 2 Diabetes.

To read Type 1/Type 2 Conversations: Diabetes in the Great Outdoors, click here.  Besides an interesting discussion, you’ll find a couple of goofy fishing photos that prove that old ladies women with either Type 1 or Type 2 diabetes can catch equally big fish wearing floppy hats.

Getting to Know Ann Wallen

Laddie_Head SquareI was introduced to Ann Wallen for the first time in 2012 at a diabetes meet-up in the Minneapolis area.  We talked a bit that evening and several more times at other Twin Cities social gatherings.  Ann’s plus-one is a white standard poodle named Lily who is a Diabetes Alert Dog (DAD).  Asking a few questions, I found out that in addition to using a DAD, Ann is a trainer and consultant for other diabetics looking to add a DAD to their diabetes arsenal.  When I saw Ann this spring, I asked if she would be willing to let me interview her for my blog.  She readily agreed and in May we met for lunch followed by a walk around Minneapolis-landmark Lake Harriet.

I am fascinated by the fact that certain gifted and well-trained dogs are able to reliably alert people with diabetes to highs and lows.  Although I am for the most part hypo-unaware and am an avid dog-lover, I don’t believe that I have the need for a DAD nor do I want the work and responsibility of one.  My Dexcom G4 Platinum CGMS is incredibly effective in protecting me from severe and debilitating lows.  I test enough that I don’t need a dog to tell me that my BG is soaring high and out of range.  (More on that later.) Abby the Black Lab is 8-years old and well past the age that it would make sense to train her.  Believe me, Abby has never shown the least interest in my blood sugar anyway.  But as I said before, I’m fascinated by DAD’s and regularly read My Crazy Life With My Diabetic Service Dog, Tarra’s blog about Duchess, and Black Dogs Rule about the two black labs who keep Stella safe.

Ann’s Story:  Ann was diagnosed with Type 1 diabetes twenty-six years ago in 1988, a few years after a difficult pregnancy and a 10+ pound baby.  She walked into her doctor’s office with the self-diagnosis of Type 1 diabetes.  He laughed at her and then reconsidered his hasty opinion after seeing a BG of 650+.  In typical Ann-fashion, she refused to go to the hospital and some kind soul at the International Diabetes Center stayed late that evening to teach her how to inject insulin.

Years later Ann gradually began losing the warning signals of low blood sugar and by 2004, she was totally hypo-unaware.  Rapid and undetected drops in blood sugar Ann and Lilyincreasingly left her incapacitated and afraid to leave home.  Like many people who used insulin in the days of animal-based insulins, Ann wonders if pumping with the modern “-log” insulins that lack c-peptide is responsible for her severe hypo-unawareness.

There are few diabetes stories where Scott Johnson doesn’t end up in the footnotes and  Ann Wallen’s story is no exception.  Many years ago Ann read a blogpost by Scott describing the new life gifted to his friend Molly as a result of the daily miracles performed by her diabetes alert dog Dixie. Inspired and excited, Ann contacted Molly to learn more about how dogs could enrich and save the lives of people with Type 1 diabetes.  Thus began Ann’s journey into what was then the very small world of diabetes alert dogs.

The organization through which Dixie had been trained was no longer involved with diabetes and Ann came up empty-handed in her search for help in obtaining an alert dog.  Let me re-phrase this.  Ann came up empty-handed in her search for help in training her own dog to be an alert dog.  In 2009 Ann went to see a trainer in Texas and spent six weeks working with scent samples to teach Lily to recognize out-of-range low and high blood sugars.  Ann indicates that this woman was a very gifted trainer, but when she and Lily returned to Minnesota, Lily had not yet started to alert.  One month later while on a trip to Fleet Farm, Lily successfully pawed Ann to a low BG of 62 and has been alerting to highs and lows ever since. (Only those who live in the heart of the Midwest will appreciate the cachet that the mention of Fleet Farm adds to any story.)

Ann and her business partner Diane have dedicated themselves to training alert dogs in their Scent Angels partnership.  The two women have been friends for over 30 years and initially crossed paths through their involvement in horse training. Diane is the principal Scent Angelstrainer and trains one dog at a time in her home.  She has successfully placed nine DAD’s since 2009.  Ann heads the owner training program and consults with people who want to train their own dog to alert.  I encourage you to check out the Scent Angels website to learn more about these incredible women and the even more incredible dogs that they have trained.  Ann and Diane work hard to be flexible and to evaluate the needs of each individual client.  At the same time both women believe that diabetic alert dogs are not the solution for every person with diabetes.  You can find contact information for both Diane and Ann on the Scent Angels website.

Who should get a DAD?:  Voicing strong opinions on this subject, Ann said that diabetic alert dogs should be provided to people who need them, not just those who want them.  Each potential client needs to have tried using a continuous glucose monitor (CGM) and found that it either doesn’t work for them or provides inadequate protection.  Some good candidates are like Ann with blood glucose that crashes too quickly for a CGM to track.  Because only about 30% of these dogs alert at night, a DAD is not a reliable solution to nighttime hypoglycemia.  The client must have a job or life situation that allows the dog to be with him/her at all times.  Ann believes that children are not good candidates for alert dogs and Scent Angels will not work with children.

What is the hardest part of using a DAD?:  Ann indicated that dealing with the public is often her biggest headache.  She is very open to discussing her dog with others, but does not want others to pet or distract Lily without permission.  Ann is extremely knowledgeable about federal law and Minnesota statues regarding service dogs.  She is rarely questioned about her right to bring Lily into any establishment in Minnesota.  She always carries documentation to support her rights for the rare times that she is challenged and she always researches the service dog statutes for any state that she visits.

What is the best part of having a DAD?:  Without hesitation Ann replied “The return of my independence.”

Interesting, but not necessarily related thoughts on diabetes alert dogs:

  • Some dogs alert to only their owners, but Lily has alerted to others such as Scott Johnson.  I normally eat a lowish-carb diet, but splurged with a sandwich and an unfamiliar salad for my lunch with Ann.  Interestingly (yes, we might be long-lost twins!), Ann and I ordered the same meal and independently bolused approximately the same amount.  The only difference is that because we were planning to walk Lilyafter lunch, I programmed part of my insulin as an extended bolus.  Halfway through lunch, Lily began pawing Ann with an alert.  Ann tested and was well in range at 112.  My Dexcom G4 vibrated and displayed a reading of 187 with double arrows up.  (I had been in the 90’s before eating.)  Obviously Lily was alerting for my high blood sugar.  Incredible.
  • Ann has a second dog named Stella who was evaluated and considered too distractible (ditzy!) to be trained as an alert dog.
  • When I mentioned to Ann that Abby the Black Lab has never shown any change in behavior as a result of my BG levels, Ann indicated that doesn’t mean that she wouldn’t have been a good candidate for training as a DAD.  According to the Scent Angels website: “The biggest differences between a service dog and a pet dog isn’t capability, but stability, reliability and training.”
  • As an owner of labrador retrievers, I have always considered poodles to be foo-foo dogs who prance around The Westminster Dog Show with silly haircuts.  Obviously I couldn’t be more wrong.  Lily is a standard poodle and of the nine dogs that Diane has trained, three are standard poodles and three are labradoodles (lab/poodle mixes).  Researching dog intelligence online, I found that according to Stanley Coren’s book, The Intelligence of Dogspoodles are ranked #2 in intelligence among dog breeds and labs are #7.  Ooops.  Sorry for the ill-informed diss, Lily….
  • There are some people with diabetes who use both an alert dog and a continuous glucose monitoring system.  Tarra of My Crazy Life With My Diabetic Service Dog uses both, but does not have much confidence in the CGM.  Ann has never had a good experience with a CGM, but I encouraged her to trial the Dexcom G4 Platinum if she ever gets the chance.
  • There is no required certification or license required for a service dog.  Anyone can order a service vest online and either legitimately or under pretense have a dog accompany him/her into public venues.  There are federal laws that govern the behavior of service animals such as the guidance that a service dog can’t sit in your lap or be on public seating.  For those people who legitimately require a service animal, it is frustrating to see others abuse the system.

Conclusion:  Thank-you, Ann, for giving me the chance to tell your story.  Spending time with you, it is easy to see how much Lily enriches your life.  Through your work with Scent Angels, you are an inspiration to and an invaluable resource for other people with diabetes.  I look forward to spending more time with you in the future both on dog walks and at local diabetes meet-ups.

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Type 1/Type 2 Conversations: Talking about Weight

Conversations BannerI first metKate Cornell in early 2013 when I began listening to the podcast archives of DSMA Live.  Her February 2012 interview introduced me to a woman who knew an incredible amount about diabetes and was well-spoken and passionate.  As I began to follow her blog, Sweet Success: My Life with Type 2 Diabetes, and read her comments around the diabetes online community (DOC), I found myself thinking that her opinions mirrored many of my own thoughts about diabetes and life in general. The fact that I have Type 1 diabetes and Kate has Type 2 diabetes just didnt seem to make any difference.

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Kate and I recently came up with the idea of collaborating on a series of four blogposts in which we will initiate a dialogue on issues that affect people in the diabetes community.  We expect to learn a lot from each other and we hope that our Type 1/Type 2 Conversations will lead to more communication and mutual respect between people with all types of diabetes.

 

Laddie_Head SquareLaddie:  For the first Type 1/Type 2 conversation, I figured that I wouldn’t shy away from a difficult topic:  Weight.  Weight is the elephant in the room in most discussions and arguments between people with Type 1 diabetes and those with Type 2.  Weight is synonymous with blame, guilt, and ignorance.

Many people with Type 1 diabetes are thin and some of us were almost skeletal when we received our diabetes diagnosis.  When you have Type 1, it is easy to associate being thin with “Not My Fault.”  If you become comfortable in this thought process, the next logical step is to become comfortable with the stereotype of Overweight = Type 2 = Their Fault.

A long time ago I learned to stay out of the Type 1/Type 2 wars and keep my mouth shut.  That doesn’t mean that I didn’t believe a lot of the stereotypes.  I’m not going to be virtuous now and say that I have totally seen the light.  No, I’m going to say that I just dont know.

In recent years I have read a lot of research that indicates that Type 1 and Type 2 are just different manifestations of inflammation and autoimmunity gone astray.  Maybe just a flip of the coin made me Type 1 instead of Type 2.  I have a friend who was diagnosed with Type 2 several years ago.  She has always struggled with her weight.  She and her husband go on the same diet.  He loses twenty pounds and she loses one.  She wonders whether the abnormalities of metabolic syndrome and Type 2 diabetes are responsible for her weight problems, not the result of her weight problems.  She might be right.

I am very thankful that except for an occasional extra five or ten pounds, I have never struggled with being overweight.  In my many years participating in the DOC, I have learned to be less judgmental and I have gained more understanding of the issues that those with the “other kind” of diabetes face.  In the last two years I have gained 5 pounds that I have been trying to lose.  I’ve had no success.  Do I think that it would be easy to lose 50 pounds or 100 pounds.  No way.  I can’t even lose 5 pounds.

Many people with Type 2 diabetes struggle with weight.  Many people without diabetes struggle with weight.  Many people with Type 1 diabetes struggle with weight.  When I read the definition of weight in my dictionary app, I only see that weight can be measured in things like mass, thickness, gravity, and load.  I don’t see judgment.  I don’t see criticism.  I don’t see blame.  We can learn something from that.

Kate_photo_RKate:  The subject of weight and diabetes is certainly a good place to start our conversations. Laddie hasn’t shied away from what is usually a very controversial subject.  Our society is obsessed with weight: how to lose it, how to remain pencil thin and blaming those who carry too much.

I have struggled with excess weight for most of my adult life.  I was a thin child and teenager.  I married at 20 and once I began having children, the weight just crept up.  I always thought it was because of the pregnancies and my inability to take off the “baby weight”.  Whatever the reason, it was difficult to lose.  Fast forward to my diagnosis of type 2 diabetes at age 50 and cue the guilt.  It doesn’t matter that I’ve spouted, quite often, about how our type 2 dxs aren’t our fault; the guilt is still there.  “If I had just lost weight earlier.” “If I’d just worked a little harder.”  It’s easy to blame ourselves.  Here’s the thing: diabetes, regardless of type, is NOT the patient’s fault!  Yes, those of us with type 2 are often overweight or obese, but so are millions of other people and they don’t have diabetes.  Sometimes it’s hard to remember that when the media is waving the fat shaming in our face.

I was diagnosed nine years ago this summer.  I have educated myself and made some significant changes to my diet and lifestyle.  (That doesn’t mean I’m always perfect.  Far from it.)  I did manage to lose some weight early on, but things have changed in the last year. Even though I now eat very few processed carbs and more veggies; even though I exercise for 30 minutes nearly every day, I am gaining weight.  It could be due to a myriad of hormone issues: thyroid, female, insulin…but in the end it doesn’t matter what Weight_2the reason is for my inability to take the weight off.  I’m trying as hard as I can and it won’t budge.  Is that my fault?  I don’t think so.

Many people with type 1 are weary of being told that “if you lost a bit of weight you could probably get rid of your diabetes.”  Guess what, so are those of us with type 2.  The myths that revolve around diabetes and too much sugar, too little exercise, too many pounds are just that – myths.  No matter what the diabetes type, none of us did this to ourselves.  None of us asked for this disease.  Quite a few of us, with diabetes and without, could benefit from losing weight, so why does society and the media vilify those with type 2 diabetes for needing to lose pounds?

Yes, I used to love to eat pizza.  Yes, I used to take a donut from the box in the break room at work.  Yes, I ate fast food and processed foods.  Yes, I used to eat bread.  Yes, I bought into the travesty that was the Food Pyramid.  Yes, I have type 2 diabetes.  Other than the diagnosis, how am I much different than the majority of Americans?

Laddie_Head SquareLaddie:  I have learned enough about Type 2 diabetes not to blame the individual.  I don’t think that there is a magic formula to becoming overweight and I certainly don’t think that being thin is a virtue, although popular media often tries to convince us otherwise.  I do know that when I gain unwanted pounds, I feel sluggish, frustrated, and full of guilt for my perceived weakness.

I blame society for much of the increase in average weight of our population.  Many people, unfortunately including a lot of children, lead a much less active life than did their parents and grandparents at the same age.  Too much TV and video game time has turned many of us into couch potatoes.  Many children live in environments where it is not safe to walk to school or play outside unsupervised.

Bad food is everywhere and often is less expensive than quality food.  I believe that carbs are wonderfully delicious and highly addictive.  More than once I have admitted to being incapable of eating carbs in moderation.  No chocolate chip cookies is easier for me that just one chocolate chip cookie.  No chocolate-covered donuts is easier for me than just one chocolate-covered donut.  No potato chips is easier than just one.  Also we are starting to see studies that indicate that the ubiquitous low fat heart-healthy diet is in fact responsible for making us heavier and less healthy.

As Kate mentions, there are many people who are overweight but don’t have Type 2 diabetes.  Weight is one trigger for Type 2 and we need more knowledge about the other triggers.  We read statistics on the huge increase in the number of people with Type 2 and the increasingly younger ages at which it is showing up.  But interestingly enough, the incidence of Type 1 is also increasing.  There is a lot of bad stuff going on in our environment.  Let’s dedicate ourselves to looking for answers rather than slinging blame on those who need our respect and support.

Kate_photo_RKate:  Laddie and I are on the same page when it comes to unhealthy carbs being addictive.  I am also someone who is better off having none rather than a “reasonable portion”.  It’s difficult to deny yourself things that are soooo good, but it’s important that we remember to put our health first and fleeting pleasure second, at least the majority of the time.

I believe that our society puts too much focus on weight and not enough focus on health.  As someone who has thought about weight my entire adult life I feel that it would be easier to make healthy changes if we were told that our diet needed to change for health reasons and stop focusing on losing weight.  Being told that you need to lose weight when it’s obviously something that doesn’t come easily is daunting, at best.  Being told that certain foods are bad for your health might make it easier to give them up.  I’m constantly reading on reputable websites (and the blasted media) that “if people with type 2 would lose a few pounds, their diabetes would be easier to control (or worse, go away!)”.  I would rather hear that we need to stop eating unhealthy foods and be told to begin a healthier lifestyle.  If we did that then the weight loss should naturally follow.  So many “diabetes-friendly recipes” (I abhor that term) continue to focus on carbs rather than weaning us from things that cause our blood sugars to spike.  There is also a movement in the medical community toward thinking that maybe the diabetes is to blame for the weight gain and not the other way around, in people with type 2.  Dr. Peter Attia’s TedTalks video outlines that very topic quite well.

In the end, everyone, regardless of diabetes dx, would benefit from a healthier lifestyle.  Everyone would profit from less focus on weight.  I’d love to see less finger-pointing and more camaraderie and understanding.  A united diabetes front will do more good for all and possibly begin to swing the tide back to more understanding of our diseases.

Laddie_Head SquareLaddie:  Kate and I covered a lot of ground in our first Type 1/Type 2 Conversation.  Weight is not always easy to talk about, but we managed to share our thoughts and hopefully learn a thing or two from each other.

I believe that we shouldn’t shy away from difficult topics in the diabetes online community.  At the same time we need to work to be respectful and supportive of each other.  If I ever write anything insensitive, hurtful, or just plain wrong, I hope that Kate or someone else in the DOC will call me on it.  Just be nice about it and I promise that I will learn from you.  And I will apologize.  And I will be a better person for it.

Kate has chosen the topic for our second Type 1/Type 2 Conversation which will be published next Tuesday, July 15.  Rumor is that it contains some fishing photos…. I hope you’ll join us.

 

Stay Tuned

Laddie_Head SquareStarting next Tuesday, July 8, Kate Cornell of Sweet Success: My Life with Type 2 Diabetes and I will be publishing a series of collaborative blogposts titled Type 1/Type 2 Conversations.  Each week we will select a topic related to diabetes and share our views in a back-and-forth discussion.  Because I have Type 1 diabetes and Kate has Type 2 diabetes, we expect that we may agree on many things and at the same time run into a few areas where we have completely different experiences and viewpoints.

The aim of these conversations is not to come to a consensus on a given topic or decide who is right and who is wrong.  Our purpose is to communicate and talk about these issues.  Both Kate and I believe that a strong diabetes community needs to reflect the voices of people with all types of diabetes and all experiences with diabetes: Type 1, Type 2, LADA, parents, and so on.  We do not have to be the same in order to respect and support each other.  In fact we are stronger because of our diversity.  So let’s talk to each other and let’s learn from each other.

The first topic that we are tackling is often a difficult one in the diabetes world.  Please join us next Tuesday as we talk about Weight.

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