July 2015 – Not Dead Yet Me

July 19, 2015July 19, 2015

Movies, Type 1 diabetes and Real Life don’t often match up

There are a lot of challenges we face living with Type 1 diabetes in a world addicted to simple answers and sensationalism. Living with the condition is mostly manageable, if challenging. Living with the image of the condition as portrayed in movies, books and T.V. adds to our daily challenges, as this is where the misleading, erroneous and dangerous public perceptions of us are formed and disseminated.

Steel Magnolias, which was a popular movie and play in the late 1980s depicting relationships amongst a group of women in a small Louisiana town, contains a portrayal of a woman living with T1D that made a big contribution to the stigmatization and exclusion of people living with this medical condition, particularly women of childbearing age, on the basis that they could not possibly live normal lives and that it was reckless and irresponsible to try.

The screenplay was written by the brother of a woman who had died from complications of diabetes. Nonetheless, it is riddled with inaccuracies and misinformation and perpetuates the myth that people with diabetes are weak, irresponsible and doomed to an early death if they try to do ‘normal’ things like having children. Quite simply, T1D is used in the story for its dramatic effect and it is exaggerated and vilified to increase the emotional impact of the narrative, in typical Hollywood style. This aspect of the narrative is milked for all its potential tear-jerking effect.

In 1989, when the movie came out, I was working as a Bay St. lawyer and trying to get pregnant with my first child. I had been living with T1D for 16 years at that point, and had not let it stand in the way of moving away from my small hometown, getting an education and launching a successful legal career. I had been married for 3 years, and we decided to try for a baby. Knowing that at the ripe old age of 29, I was already considered higher risk for a pregnancy, and after 16 years of T1D, that risk was increased, I was still keen on taking a careful and well-planned approach to reproducing. I was enthusiastically supported in this endeavour by my medical team, including my endocrinologist, my family doctor and my ob/gyn, all of whom had a significant amount of experience with women with T1D having successful pregnancies.

This movie did not help my situation at work or in society when I disclosed to people that I was pregnant and living with T1D. In fact, it made it very difficult, because it added an additional source of external stress at a time when I least needed it. It made my friends, colleagues and family fear for me at an unwarranted level, and some to consider me irresponsible for trying to have a child.

In fact, the pernicious effects of this misleading image of living with T1D drove me further into the closet than I had ever been and kept me there for many years.

I realize that the story of the T1D woman in Steel Magnolias is a narrative device used to showcase and emphasize the strength and endurance of the relationships of the other women in the play, but I and many other women with T1D were stigmatized by the portrayal of that character. The story should come with a warning or a disclaimer at both the beginning and end of it. Something to the effect of:

“Although this story is based on actual events, the accuracy of the information and portrayal concerning women with T1D has been subject to considerable poetic license and dramatization and does not in any way represent a true picture of most such women, who are, in fact, quite capable of living normal and productive lives which often include successful pregnancies and challenging careers.”

July 19, 2015July 19, 2015

World Diabetes Day 2013: Crisis Managed

Posted on my FB Profile on WDD 2013:

Today is World Diabetes Day. Since most of what you will read will either conflate Type 1 and Type 2, or just focus on Type 2, which is 90% of cases, here are a few quick facts about Type 1:

-78,000 children a year are diagnosed with T1D

– 85% of people living with T1D are adults– so do the math…

-More than 300,000 Canadians and over 3,000,000 Americans have T1D.

-the prevalence of T1D has doubled in the last 25 years and is projected to double again in the next 15-20.

– it is an autoimmune disease and we don’t know what causes it. For some reason, your immune system attacks and kills the cells that produce insulin.

-insulin converts sugar into energy for your cells.

-people with T1D don’t make insulin.

-without insulin you die, so you need to inject it or pump it on a daily basis.

-there is no cure, and no matter how much you exercise or how little you eat, you will still need to inject or pump insulin every day.

-“Both children and adults like me who live with type 1 diabetes need to be mathematicians, physicians, personal trainers, and dietitians all rolled into one. We need to be constantly factoring and adjusting, making frequent finger sticks to check blood sugars, and giving ourselves multiple daily insulin injections just to stay alive.”— JDRF International Chairman, Mary Tyler Moore

-managing T1D over a lifetime makes you smarter, more self disciplined and actually healthier than most people your age who don’t have to pay the same amount of attention to their diet, exercise and overall health. It also reminds you on a daily basis that we all live on the edge of death, all the time. That can get heavy.

-T1D patients are routinely discriminated against in employment, healthcare and insurance — people underestimate our abilities and capabilities and make wrong assumptions about us all the time.

– People living with T1D can achieve anything that they wish, they just have to work hard to manage their condition so that it doesn’t interfere.

WEAR BLUE TODAY TO SUPPORT PEOPLE LIVING WITH DIABETES, AND IN PARTICULAR TYPE 1, THE ORPHAN CHILD OF THE DIABETES WORLD.

Thanks for reading all the way to the bottom of this. For more information on T1D, go to www.jdrf.org.

XXXOOO
Lynda

So I start off World Diabetes Day 2013 with a 3:45 am ‘Replace Battery’ Alarm on my insulin pump, bleeping me into foggy consciousness and telling me I’m not getting any insulin until I put in a new battery. Wait a minute, I just replaced the battery yesterday! And the day before! What’s going on?

I get up and put in yet another new battery (the expensive, lithium kind that is supposed to last for months and has a 15-year shelf life) and go back to bed. 7:45 am the ‘Replace Battery’ alarm goes off again! WTF???!!!

I get out my emergency replacement pump and try the last two batteries in it — no go. Okay, the batteries really are duds. But that was my last one, from the new pack that I just bought a few weeks ago (I always keep at least 2 new ones in reserve). So I’m not doing anything today until the pharmacy opens at 8:00 am so I can get some new batteries. Thank God I live in a big city, where the love of my life (Jim) can zip down to the corner pharmacy for opening time and grab me some fresh batteries and make it back before I finish my first coffee.

Two things:

1. Always have about 4x the amount of diabetes management supplies you think you need, and
2. A supportive life-partner can literally save your life. Treasure him!

Okay, now, and off to walk, run and hike with the Russian for our usual hour in the morning. Dressed all in Blue to show support for World Diabetes Day….

MY WDD FB POST ATTRACTED A LOT OF SUPPORT AND INTEREST FROM MY NON-T1D FRIENDS. UPDATED ON MY FB PROFILE THE NEXT DAY….
Okay, so MB (not a T1Der, but someone I grew up with), you were right! It was the pump. So here’s what happened and why I love Animas Canada, my insulin pump company. After all of yesterday’s shenanigans with batteries, I noticed this morning that the battery indicator was showing about half-charged, which shouldn’t be for a brand new battery (these things usually last 2 or 3 months).

I checked the History DB in the pump and saw that I had changed the battery 5x in 4 days. I called the 24/7 Technical assistance number on the back of my pump and spoke with Sue, RN, CDE. She asked me to pull some info off the pump and decided that we should replace the pump right away, and that I should switch to my back-up pump to ensure insulin delivery was not impacted. She said that Animas Canada would be calling me shortly to arrange delivery of my replacement pump.

She wasn’t kidding. Within about 15 minutes, I was speaking with Marynim of Animas Canada and she arranged to have a new pump couriered to me at my location within 1.5 hours. It arrived as promised, I transferred all the info from the old one to the new one, paired it with my OneTouch Glucometer, loaded it up with insulin and presto! Good to go.

The reason I love this company so much is that they provide such amazing service. I only spoke with 2 people, each of whom did exactly what I needed them to do. I was never placed on hold. I never had to repeat my story. They quickly addressed and resolved the problem to my complete satisfaction, always making my needs paramount. I was treated with respect, trust and compassion throughout what could have been a very stressful and dangerous experience.

Thank you Animas Canada! You are a trusted member of my diabetes management team!

XO
Lynda

July 17, 2015July 19, 2015

Captain of My Team

It is a cultural artifact that we regard medical professionals as authority figures. We expect them to command us and we are expected to obey. Hence the phrase: “doctor’s orders’. This relationship does not work for Type 1 Diabetes. It infantilizes the patient, which is the worst possible outcome. A person living with Type 1 needs a team of professional health care providers — endocrinologists, opthamologists, general practitioners, nurses, dietitions, psychologists, social workers, diabetes educators — to help with management of the condition. But the patient needs to be the Captain of that team. Healthcare providers should be trusted advisors, not authority figures.

Healthcare providers may have relevant and necessary training and expertise in the science of the condition. I say ‘may have’ because in my experience not every healthcare provider who purports to understand T1D actually does. And a little knowledge, as they say…

Many conflate it with Type 2, and seem to think that all diabetes — and all diabetics — are the same. This is one of the things that irritates me the most. As far as I am concerned, Type 2 is a whole different medical condition that is not relevant to my life or my chronic medical condition. The two diseases share a name. They should not. This has created dangerous confusion in both the public and certain healthcare providers, who insist on speaking to and treating individuals with Type 1 the same as those with Type 2.

My body does not make insulin. No matter what I do, that is not going to change. I can diet and exercise till the cows come home, but I will still need insulin. We all need to deal with that. Putting me in a room with a bunch of Type 2 patients does not help me. All of the programing, public information and educational initiatives that are concerned with ‘Diabetes’ are, in my experience, primarily focused on Type 2 and we are just an afterthought. There may be some focus in the paediatric system on Type 1, but once we turn 18, we are abandoned.

Some of us are trying to change that.

Anyway, back to being the Captain of my healthcare team. A Type 1 patient needs to be in charge of her own healthcare management, because it requires effort and attention 24 hours a day, 7 days a week, and my healthcare providers are not available to me on that basis. Notice that I did not conflate that into 24/7. That’s because I want to convey to you just how specific, comprehensive and overwhelming that effort is. It is a tremendous amount of work. I am thinking about my condition all the time, every waking moment, no matter what else I am doing. I’m balancing my blood sugar against my food intake and my exercise level, plus the effects of my stress level, climate, altitude, etc. , all of which have an impact on blood sugar.

When I’m walking my dog, I’m managing my diabetes, calculating whether exploring that new path in the park is going to require a lower basal rate or some carbs to keep me balanced, wondering whether my perspiration is caused by exertion or low blood sugar.

When I’m in a business meeting, I’m managing my diabetes, calculating how much time I have before I need to make some adjustment in order to maintain my cognitive acuity. Stress makes my blood sugar rise, so does prolonged inactivity. Did I adjust my insulin dosages appropriately and is it still working properly?

When I wake up in the middle of the night, I have to manage my diabetes, directing my foggy night-time brain to get up and test my blood sugar to figure out if I woke up because it’s too high and I need insulin or if it’s too low and I need sugar. Then I need to be mentally clear enough to take the right corrective action, if indeed one is required. An error in either direction can have nasty consequences. Ignoring it and going back to sleep is just not an option.

When I’m performing on stage with my band, I’m listening not just to my voice and the music, but also to my body, looking for signs of low or high blood sugar. For a whole 45 or 60 minute set, I’m stuck there, not able to test my blood or bolus insulin – and people are watching me. At least I hope they are.

The point is I am managing my condition constantly. It’s not like I just give my medication and then forget it and get on with my day. So a Type 1 patient soon gains more intimate and comprehensive experience of her condition than any medical professional can match.

You need both in order to succeed: the medical expertise and the experience of the condition. You need a collaboration between trained medical experts who are current with all the latest scientific data and studies, treatments, therapies and theories and the you need the expertise of the individual who is living with the condition in his or her own particular body and managing it 24/7.

Healthcare practitioners seldom treat just one type of patient. Typically, they see a range of medical conditions, even if they specialize. T1D is only one of the medical areas an endocrinologist or a nurse or a dietitian will need to stay current with. T1D is extremely complex and not entirely understood. There is no cure, and we still are not sure why some people acquire T1D and others don’t. Also, each case is unique and what works for one individual doesn’t necessarily work for another. And in case that isn’t complicated enough, the condition in a state of almost constant flux. What worked for me a year ago (or a month or even a day ago) doesn’t necessarily work today. I can do exactly the same things two days in a row and get wildly different results. It’s like having a tiger by the tail.

The T1D individual, on the other hand, lives and breathes T1D, but in the context of their whole life. It is not the only thing I’m doing. So I need you, healthcare providers, to help me understand the big picture – the broader implications of the studies of hundreds, perhaps thousands of individuals over time and in varying circumstances. I need you to help me understand the possible implications of the things that are happening to me, as well as the things I do or don’t do to manage my condition. I need you to present me with alternatives and possibilities. But in the end, I need to be the one ultimately responsible for managing it. I need to make the decisions, after appropriate input from the experts on my team. Because I am the Captain. I need to be the Captain, because ultimately I am the one living with the consequences of the decisions made in the management of my condition.

So I don’t accept ‘doctor’s orders’. I expect consultation, communication and collaboration. I think we all want the same thing: better health outcomes, fewer hospitalizations, and lower long term costs — physical, psychological and financial — of managing chronic illness. I believe – no, I know — that this is the only way to get there. We all need to be team players, and I need to be Captain of my T1D management team. Go Team!

July 17, 2015July 19, 2015

Medical Residents: Do No Harm

Over the past 41+ years of living with T1D, I have met a lot of medical Residents: doctors who have completed their initial training, but are now doing further study on the road to becoming specialists – basically, newly-minted GPs with aspirations of greater things. Because my (excellent) medical team has always been situated in or associated with teaching hospitals, Residents are part of the territory.

I try to maintain an open mind and a positive attitude whenever I am told that a Resident is studying with my team and asked if I would mind if he or she either sat in on my appointment, or saw me in advance of my meeting with my Endo. After all, if we don’t allow these people to deal with real patients while they are under the supervision of a specialist, how will they learn to do it properly? I would much rather meet them in the structured environment of their education than after they hang out their specialist shingle. So I have participated in the training of many, many Residents in the course of my many years of living with T1D.

Some of them have been wonderful. More of them have been arrogant, judgmental condescending, and ill-informed, lecturing me about the complications of diabetes and how my BG control is not perfect; doing their best to make me feel like a failure. Many times, they have succeeded, and it has taken me days or weeks to rebuild my self-confidence and motivation to live well with Type 1. It is for those ones – and for the patients living with T1D that they have been inflicted upon — that I write this,

Dear Resident,

So you are a Doctor now. Congratulations. You have completed quite a few years of post-secondary study and have learned much about the human body and the multiple ways it can malfunction. And now you want to learn more, and to focus your efforts in a more specialized area. Again, congratulations. Without good Endocrinologists, we would not have achieved the many advances that have given us a greater understanding of Type 1 Diabetes and how a person with the condition can live a long and healthy life. I look forward to the contribution that you will make to the improvement in treatments, therapies, techniques, and ultimately the quality of life of people living with this complex and difficult chronic medical condition. Perhaps you will help to find a cure.

But at this point in your journey, it is far more likely that I know more about T1D than you do. You have read some articles, maybe even a few books on the subject. Perhaps you took a class or maybe a few sessions in a course were dedicated to the subject. So you know a little bit about it. Maybe you are even able to distinguish between the different types of the condition and not conflate Type 1 with Type 2. The thing is that you know just enough to be dangerous and not enough to be helpful. At this stage of your career, I can help you. You cannot help me.

I have been living with Type 1 Diabetes for over 41 years. That means that 7 days a week, 24 hours a day, I manage my diabetes. I know better than you how my metabolism responds to the variables that can affect blood glucose levels. I may not be perfect at it, but I have more data to work with than you do, based on hard experience. I have managed 2 successful high-risk pregnancies and have 2 healthy children to show for it. I know that if my BG is 5.5 at bedtime, I need to eat something and not bolus for it or else I will go low overnight. I know that if I am out walking around with friends sightseeing or shopping, I need to adjust my basal rate downward, or eat something to maintain reasonable levels of BG. I know that if I receive bad news or I am subjected to a stressful situation, my BG will rise rapidly even though I may be late for a meal. And I know that it will fall just as rapidly once the stress is removed. I can usually figure out when to adjust my insulin and when to resort to exercise or meditation instead. I know that I am very sensitive to insulin and that I have to be very careful not to give myself too much of it, or I will get trapped on a rollercoaster cycle of rebounding lows and highs. I also know that no matter how hard I try or how much I learn, T1D will always throw me curve balls that defy explanation and I will just have to react to them as best I can.

I know that in order to achieve ‘perfect’ BG levels, I would have to make diabetes management my full-time job. I know that because I did it twice for the high-risk pregnancies. I quit my job and made perfect BG my full-time occupation in order to give my children the best chance I could of being born alive and healthy. There is no other reason that I would do that, and I won’t ever do it again, because I’m done reproducing. So I used to be perfect, but only for a short time, and I won’t ever be again. And I’m okay with that.

My A1C will likely never be right on the official ‘target’, because in order to achieve that, I would probably have to give up driving, travelling, skiing, horseback riding, singing, sex and other things that I enjoy and that give texture and meaning to my life. I KNOW WHAT THE RISKS ARE. I have been staring into that abyss for more than 41 years, and guess what? The risks keep getting re-evaluated. I have seen the official story go from predicting that I would not live into my 30’s, and I would be blind, on dialysis and a multiple amputee with a bad heart by the time I was in my 20’s – to celebrating the Golden Cohort of people who have lived for 50 years or more with the condition and have no complications. I’m hoping to make it into that cohort and I will work hard to get there.

So, dear Resident, I am willing to share with you my experience, expertise and knowledge of living with Type 1 Diabetes, and to answer your questions and try to help continue your medical education. All you need to do is to listen respectfully, without judgment, condescension or arrogance. I know that is very difficult for you to do, given the training and acculturation that you have had so far. But if you can manage it, you might just have a shot at being a great Endocrinologist and making a real difference in the world. And if you can’t, please just leave the room now so that I can have a meaningful meeting with my Endo, who does understand and value the whole person that I am and the hard work I do to manage this condition. For you see, this may just be a bus stop for you. For me, it is a lifelong journey. And you can’t help, but at least you could try to DO NO HARM.

July 2, 2015July 19, 2015

So What Should CrossFit do now?

SO WHAT SHOULD CROSSFIT AND ITS CEO DO NOW?

There has been a big response from the diabetes community to the blatantly wrong and dangerous twitter campaign started June 30 by CrossFit, an organization that promotes itself as a health and fitness resource. The Type 1 community has been particularly vocal in denouncing this misinformation and its damaging effect on people living with any type of diabetes. CrossFit’s attempts to defend the allegation that consumption of sugary drinks like Coca-Cola causes diabetes have displayed an even deeper ignorance of this medical condition. So what should Crossfit and its beleaguered CEO do now? Can they redeem themselves?

I just got back from my daily one-hour morning hike with my Siberian Husky. I’m wearing my insulin pump and my CGM, and I’m doing all the calculations and making all the adjustments that go along with living a healthy, active life with Type 1 diabetes. But during my hike, I was reflecting on this whole situation and wondering how can we deal with this in a constructive and positive way? Forty-two years of living with diabetes has taught me that in order for me to be healthy, both physically and mentally, I need to focus on dealing with challenges with relentless optimism, constructively and positively.

First, a little education: It’s not because of anything you do that you get diabetes. It’s not from eating sugar or drinking sweet drinks. It’s not from lack of exercise. It’s not from smoking or drinking alcohol. It’s not a sexually-transmitted disease, and it’s not from overexposure to the sun. While it may be wise for you – and anyone else — to pay attention to any or all of these things to be healthier, none of them will make you a diabetic, or keep you from getting diabetes if that is your fate.

People like simple answers. There is nothing simple about diabetes. It is a complex condition with multiple factors, whether you have Type 1 (autoimmune), Type 2 (metabolic), LADA (latent autoimmune) or gestational (pregnancy) diabetes.

Once you have diabetes (through no fault of your own) there is no cure. There are things you can do to reduce the risk of complications (heart, eye, kidney, and nerve damage). The most important is keeping your blood sugar levels as close as possible to what they would have been if you did not have diabetes. For some of us, that means injecting or infusing insulin every day, over and over. Insulin is not an easy drug to take. Too much can kill you. To avoid dying, you will need to have a quick source of glucose (like Coke) available immediately. Too little puts you at risk of complications. The amount of insulin you need can change day to day, hour to hour, minute to minute, based on a whole host of interdependent variables, many of which are not under your control (stress, infection, food, activity, time of day, and many more).

I do not expect people who do not live with diabetes to grasp the complexities of my medical condition. Grossly misleading and damaging corporate speech is another matter entirely. When someone in a position of corporate authority, who holds themselves and their company out as health and fitness experts makes such a statement, the damage done to the tens of millions of people living with diabetes (in North America alone) is profound, significant and widespread.

People with diabetes will be shamed, blamed and bullied, and will be discouraged from the hard work that it takes to manage this condition every day, day after day, with no cure and no break. Public misunderstanding of the condition will be increased and exacerbated, and there will be more shaming, blaming, bullying and hurting of people living with diabetes, many of whom are children. There is already far too much of that, and many, many of us hide our condition to try to avoid it, resulting in danger to our lives and to our mental health.

The fact that it was intended as a parody – a joke – makes it even more offensive and damaging. Diabetes is no joke. Living with it is not funny (although a sense of humour is helpful). Being blamed for having brought it on yourself is alienating, hurtful, debilitating, degrading, dangerous and wildly inaccurate.

Sugar does not cause it. There is no way to avoid getting it. There is no cure. If you have diabetes, IT IS NOT YOUR FAULT! There are millions of pages of medical research available to support that statement. There is no basis in fact for the statement made by CrossFit and it’s CEO. To learn more about diabetes in an easy-to-understand format, go to www.diabetes.org or www.jdrf.org. These resources are free and available to anyone with an internet connection, and should have been the first stop on the fact-checking for the CrossFit Twitter campaign.

So what should CrossFit do now? How can they mitigate some of the damage they have done, both to their own corporate reputation and credibility and to the group of people they have unjustly maligned?

I have a few suggestions: 1) Admit you were wrong. 2) Apologize. 3) Partner with, give money to and publicly support the many diabetes advocacy groups working to help people living with any type of diabetes live healthy normal lives. Groups like Connected-In-Motion and T1 Diabetes Think Tank Network work hard, with very little financial support, to help people with diabetes transcend the limitations of their medical conditions and achieve their goals.

In short, CrossFit needs to put its money where its foot currently is (in its mouth) and sponsor and support us in our efforts to live full, productive and healthy lives in spite of the medical condition we did nothing to deserve.

So that is my challenge to you, CrossFit. Are you up to it?

I have to go exercise my horse now.