Tuesday, July 22, 2014

#Dblogcheck, Friends and Family

Today marks the third conversation between a T1 (Laddie) and a T2 (me).  This conversation revolves around Family and Friends and what we choose to make public (or not) about our diabetes.  You can find the conversation on Laddie’s blog here.  I hope you’ll pop over there and take a look.  

Today is also #Dblogcheck day.  What is that?  It’s the brainchild of Chris at A consequence of hypoglycemia.   Basically, this is a day to let bloggers know that you are reading their posts.  Lots of people “lurk” but never leave a comment.  Receiving comments is wonderful and helps us to know that someone is out there.  So today, if you read a diabetes blog post, please leave a comment even if it’s just “check” so we’ll know you’ve stopped by.  Since I haven’t really posted anything today, you could leave a check on this post or maybe read an earlier post of mine (see over there on the left?  A whole list of previous posts to choose from.)  Oh, and don’t forget to head over to Test, Guess and Go and read my conversation with Laddie!

Tuesday, July 15, 2014

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

Kate: 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:  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.
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.
Laddie:  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….)

Kate:  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.  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.

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..

Thursday, July 10, 2014

Rolling up my sleeves

The things I experienced at Master Lab continue to rumble around in my head.  Despite dealing with an illness since my return, I can’t stop thinking about what to do next.  In fact, I’m so frustrated about not feeling up to sitting at the computer, hammering away to express my thoughts, that I’m writing this post with pen and paper.  So what’s next?

We learned that we, as advocates, need to speak up in a united way about policies and bills before Congress that will have an impact on people with diabetes.  Filling out the survey that I mentioned in my first Master Lab post will allow all of us to be informed when these types of events occur.  No need to wait though, there’s something we can do now.  

The National Diabetes Clinical Care Commission Act (HB 1074 and SB 539) has been introduced and needs the support of our Congressmen.  Both bills are identical and seek to “create a commission comprised of diabetes experts, primary care physicians, other health care professionals, patients, and representatives from the federal agencies most involved in diabetes research, prevention and care.” (DHF’s words) There are currently 30+ Federal agencies that are involved in diabetes policy but they might not be coordinating their efforts, wasting time and resources. (Big surprise).  This commission would help to keep the focus on us, the patients.

I’m not big on politics, in fact it makes me bat-shit crazy, but I’m smart enough to realize that we have to play the game in order for the lives of PWD to continue to improve.  I can write a letter.  I can send a tweet.  You can too.  Being an advocate doesn’t mean that you have to go to conferences or write a blog, it simply means to speak up for something or someone you care about.  Raise your voice to make a difference.  Come on, you can to it!

You can go here for a list of Representatives by state and here for a list of Senators.  If you click on their name you will go to their website and can find their Twitter handles and such. (See?  I’ve done half the work for you.)  Drop them a line encouraging them to co-sponsor and support this bill.  They represent you so make sure they know what you want them to do on your behalf.  

If thinking of what to say has you stumped, let the American Association of Clinical Endocrinologists do the work for you.  Go here and fill out the form.  There is already a letter there that you just have to edit to reflect that it’s coming from a patient and not a doctor.  It took me less than 5 minutes and my Senators will receive an email from me.
I know it’s not easy to speak up, but it’s important.  If you can spend 30 minutes on the internet watching cat videos, you can spend a few minutes to contact your Congressmen and tell them to get to work for you!

Phew!  That writing long-hand crap is exhausting! Then I had to come here and type it and add all the links!  Time for a nap.

Tuesday, July 8, 2014

Type 1/Type 2 Conversations: Talking about Weight

I have many friends in the Diabetes Online Community who have Type 1 diabetes.  Laddie Lindahl is one of them. You can find her blog at Test Guess and Go.  Over the course of reading each other’s blogs we became friends on Facebook and, thanks to Laddie, have met in person.  Laddie approached me recently with an idea that I found intriguing: what if a type 1 and a type 2 had conversations about what it’s like to live with diabetes and some of the myths surrounding this disease.  Are we really all that different?  Let’s find out.

Laddie:  For the first Type 1/Type 2 conversation, I figured that I wouldnt 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 doesnt mean that I didnt believe a lot of the stereotypes.  Im not going to be virtuous now and say that I have totally seen the light.  No, Im 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.  Ive had no success.  Do I think that it would be easy to lose 50 pounds or 100 pounds.  No way.  I cant 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:  The subject of weight and diabetes is certainly a good place to start our conversations. Laddie hasnt 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 doesnt matter that Ive spouted, quite often, about how our type 2 dxs arent our fault; the guilt is still there.  If I had just lost weight earlier.” “If Id just worked a little harder.”  Its easy to blame ourselves.  Heres the thing: diabetes, regardless of type, is NOT the patients fault!  Yes, those of us with type 2 are often overweight or obese, but so are millions of other people and they dont have diabetes.  Sometimes its 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 doesnt mean Im 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, insulinbut in the end it doesnt matter what the reason is for my inability to take the weight off.  Im trying as hard as I can and it wont budge.  Is that my fault?  I dont 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:  I have learned enough about Type 2 diabetes not to blame the individual.  I dont think that there is a magic formula to becoming overweight and I certainly dont 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 dont 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.  Lets dedicate ourselves to looking for answers rather than slinging blame on those who need our respect and support.  

Kate:  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:  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.