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.”

(Photo and  text © Lynda Covello, 2015. All rights reserved. )

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

(Photo and  text © Lynda Covello, 2015. All rights reserved. )

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!

(Photo and text © Lynda Covello, 2015. All rights reserved. )

 

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.

(Photo and text © Lynda Covello, 2015. All rights reserved. )

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.IMG_2403 - Version 2

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

I have to go exercise my horse now.

 

( © Lynda Covello, 2015. All rights reserved. )

I really Hate doing fasting bloodwork…

I really hate doing fasting bloodwork. It’s inconvenient, intrusive, and it induces a level of anxiety in my life that I could do without. I start to worry about it and organize for it about 2 or 3 days ahead of time. I have to get someone else to walk the Russian, because no way is he going to wait until I get home from the lab to empty his bladder and bowels – and really, why should he, when he hangs on through the night knowing that, come morning, he will have his usual hour-long hike at the break of day?

Except if I’m fasting, I can’t take him, no matter how early I get up, because it’s too risky from a low blood sugar perspective – I need to eat before I walk for an hour. And if I just leave the house in the morning without taking him, well then he will assume that I have abandoned him and won’t be back until later in the day.

So there’s that. There is also the wobbly pre-coffee feeling as I head out the door to the lab. Even though I reduce my basal insulin on the day of the test so that I start off a little higher than normal, so that I won’t slip too low and have to eat something to stave off a low, I’m never sure it’s going to work. Sometimes it does and sometimes it doesn’t. And if it doesn’t and I’m too low, then I have to tank my planned lab visit and try again the next day – which means that I have to arrange for the dog to be walked by someone else once again.

Assuming that I get all the way to the lab without a low blood sugar, once I get there, I have to line up and wait for my turn. There appears to be no mathematical progression to the order in which they call people in to get their tests done. I know that this is because the staff prioritizes people according to their own criteria for who need to be processed most urgently. A Type 1 on the verge of a low blood sugar because she has to be off her regular eating schedule does not appear to be a high priority. I could be wrong and maybe all that is factored into the calculation, but all I know is I’m sitting there listening very carefully to my body, trying to avoid the crash and burn of a dangerous low, and the minutes are ticking by – it makes me anxious. I wish there was some way that I could minimize the unknown time element in all this, but the hospital lab will not make appointments for specific dates and times, and there is no way of knowing how busy they will be on any given morning. Since Type 1’s have to do this testing on a regular basis ( 3 or 4 times a year, generally) year in and year out, one would think that there would be some kind of system for making it less risky and uncertain. One would think that – but there isn’t.

Then there is the whole issue of how much I hate being in a hospital or clinic or any other kind of medical treatment setting because it launches all kinds of negative feelings of helplessness, hopelessness and despair in me. This is most likely an accumulation of a lifetime of living with a chronic medical condition that requires medical supervision and intervention on an ongoing basis. I never feel like a sick person until I am in a medical setting. Then it all comes rushing in on me and I have to fight it just to keep from crumpling into a heap on the floor. It fills me with a kind of grey numbness and I stay in that fog until I’m well clear of the hospital.

This is the case even if I’m not fasting, but just having random bloodwork and urinalysis.

Most of the lab technicians are really lovely, gentle people, who seem quite determined not to hurt or intimidate you. They are calm and move slowly. They handle your arm with care as they tighten the rubber band around the upper part of it to make your veins pop into view. They are gentle and delicate as they push the needle into your vein, and they try to keep from jarring it when they change the blood collection vial, which for me is usually between 4 and 7 times. They encourage you to sit quietly for a minute while your body adjusts to the blood loss, and then they send you on your way with a cheery: ‘All done. Have a good day.’

So why do I have such anxiety about getting labwork done? I suppose that part of it is that it is a reminder that I’m not ‘normal’ in terms of my metabolism, that I could become an inmate at a hospital at anytime through no fault of mine. And of course, I’m always anxious about the results. Type 1 is an insidious medical condition that permeates your body and all its systems over time, causing damage at a microscopic or molecular level. You don’t know you are getting complications until you have them. It sneaks up on you and attacks when you’re not looking. Where you can’t look. So the labwork is necessary as an early-warning system, to detect minute changes while there may still be time to do something about them.

Going for labwork is necessary because it provides me with key information about how I’m managing my condition and some hints about where I might have to pay closer attention. It also reminds me of all the things that can go wrong, all the damage that diabetes can wreak on my body. I have felt for 41 years that I am living on borrowed time, that I somehow escaped sudden death but now death follows me around and tries to chip away at me when I’m not looking. It reminds me that I will die, no matter what I do or how great I am at managing this thing. My challenge is to delay it for as long as possible. I don’t want to die at all, but I really don’t want to die of incremental damage if I can help it.

So I walk away from the lab feeling good about myself, feeling that I’m doing my part to stay healthy, and knowing that I won’t have to do labs again for at least three months and maybe longer if the results are in target. I don’t even know the results yet, but I already feel better because I know that I will have them, and that information gives me more power to control my condition and continue to live the life I want to live.

(Photo and text © Lynda Covello, 2015. All rights reserved. )

Music Heals

In late 2007, I was diagnosed with depression. I had some trouble accepting the diagnosis, because the way I saw it, with everything that was going on in my life at that time, I would be crazy not to be bummed out and upset by it. But the diagnostic questionnaires they give you to determine such things indicated that I was depressed in a major, clinically relevant way. I felt completely burnt out.

Just what I needed. First, Type 1 Diabetes, and now this. It really felt like more than I could deal with. I was having trouble keeping my blood sugars under control because of some highly stressful events that had been going on for more than a year, and this felt like a kick in the head when I was already on the ground.

My GP benched me. By that I mean that she strongly recommended that I take at least three, probably six months off work and focus on taking care of myself, both physically and mentally. I was in the kind of job where there was no one to cover for me if I took a leave – they would have to replace me if I was gone for more than a couple of weeks. I felt indispensable and overwhelmed at the same time. I had not yet learned that no one is indispensable, and that I could not keep putting everyone else’s needs ahead of my own, both at work and at home.

So I made a very difficult call to my boss and explained the situation to him. He was supportive, but to me, it felt like I was a failure. I had worked so hard since my diagnosis at age 14 to keep T1D from interfering with my life and my ability to function at a high level professionally was a cornerstone of my identity. This was an admission that I was not ‘normal’ – my diabetes was pulling me down and this diagnosis of depression threatened to pull me right under. I was weak and I hated being weak. I needed help and I hated needing help. Suddenly, I was a sick person instead of a highly efficient, multi-tasking super-mom career woman.

I spent a week or so downloading tasks, projects and information to the team that I had built at my job. I had 5 people reporting to me and I felt that I was letting them down by pushing everything off my plate onto theirs and disappearing for an extended period. They were supportive and concerned, and sounded a little fearful when I spoke with them. Would I be okay? I honestly didn’t know, but I tried to reassure them.

The first few weeks of my medical leave were the worst. I felt empty and exhausted. I cried a lot. Felt useless. Felt sorry for myself. Hated my weakness at feeling sorry for myself. I got out of bed only to go to medical and therapy appointments. I withdrew from my friends and family. My dog, a 10-month old Siberian Husky, was the only one who could get me out of the house for non-medical trips. His joie de vivre was irresistible, and he needed exercise. I was the only one home during the day, and so he decided that we would go out for regular walks.

A few months before all of this, I had joined a jam session club that got together on Friday nights to play and sing rock and pop songs from the 60’s to the 90’s – the soundtrack of my youth. I had been a singer in my teens and early twenties, performing with garage bands and then pick-up bands at university and law school, but had given up music to become practical and successful. With a busy career and then a family, I didn’t have time to be in bands anymore. Then I found this group that welcomed me to come out and just sing whenever I could, no public performances, no audiences, just a bunch of musicians with day jobs playing together for fun.

Of all the things I missed when I took my med leave, I found I missed this the most. So I got out of bed Friday afternoons, showered, dressed, and headed out to a jam session. This was a big part of what healed me. Music. Community. Collaboration. Art.

Apparently, the medical community is beginning to agree with me:

http://www.theglobeandmail.com/life/health-and-fitness/health-advisor/the-benefits-of-music-therapy-help-orchestrate-its-rise-in-patient-care/article23669818/

( © Lynda Covello, 2015. All rights reserved. )

Trickster, Dancer, Healer: Life Lessons From My Horse

I’ve checked my wireless continuous glucose monitor and adjusted the basal insulin rate on my pump accordingly for the activity level that I anticipate over the next 2 hours. I change from my running shoes into my weathered, muddy barn boots, grab the halter, a lead, a couple of treats and a dressage whip. The sky is silver-gray this morning as I approach the gate to the paddock, and the ground is wet. I call his name and he lifts his big white head and turns it to face me. The rest of him doesn’t move, just that long sinuous neck. He looks at me for a moment and then drops his head and goes back to eating hay from the flake at his feet. Knowing he will not come to me today, I open the gate and set out across the field to him, squishing through a mixture of mud, shit, weeds and straw that is wet from this morning’s rain, sinking to my ankles at every step. You can’t always have what you want when you want it, and sometimes you have to work harder for it.

The smell of barn swells up around me as I make my way across the muck, lifting the lead rope high so that it doesn’t get dirty. I inhale and am happy. It doesn’t take a lot to make you happy. I reach him where he is standing on dry, higher ground and he lifts his head again and turns his face to me, his dark, liquid eyes assessing me, his nostrils expanding as he takes in my scent: Do you have anything for me? He is calm and unhurried. My time means nothing to him. Slow down. Don’t hurry. Be here. Pay attention to details.

There are treats in the barn, I tell him, stroking his long, muscular neck and massaging between his ears, feeling myself slowing to the beat of his heart. I stand next to his head, just in front of his chest and hold up the halter. He puts his face down into it so that I can reach to pull it on over his ears and fasten the cheek snap. If you are gentle and patient, good things will happen.

 I speak to him softly of inconsequential things as I snap the lead rope to the ring on the halter and begin to walk back toward the gate. He doesn’t follow, and I reach the end of the lead rope with a jerk. Slow down. Take stock. Be aware of what is happening. I take the few steps back to him and run my hands along his shoulders and back, down his front legs, and up to his face, checking for sore spots or injuries. What’s wrong? I ask. He puts his nose next to the pocket of my jacket, where the treats are hiding. His nostrils open and flex, taking in the scent. Yes, I say. There are treats. You get them when we get to the barn. Come on, I urge, tugging gently on the rope and turning in a different direction this time, not toward the gate, but toward the green, drier terrain across the top of the paddock. This time he follows, nuzzling his nose against the back of my arm. Adjust your expectations. You can’t always get where you want to be by going directly toward it. Be willing to try different paths.

I turn gently at the apex of the field and start a loose semi-circular motion in the general direction of the gate. We step carefully through the deep muck, each of us lifting our legs high between each step: my two, his four. Our feet make sucking sounds as we go. It’s nice to have company on a shitty journey.

 Then we are at the gate. I open it and lead him through, then turn to close it behind us to keep the others in, and he turns in a graceful arc, resting his head on my shoulder as I fasten the chain back in place. If you are patient and kind, you won’t be alone.

 I turn and pick up the dressage whip where I left it leaning against the fence, anticipating the next step of the game, and sure enough, he plants his feet squarely and refuses to move them, lowering his neck and head towards the pocket with the sweet-smelling treats in it. Just when you think you have control of the situation, you don’t.

I know, I say. Molasses and oats. Yummy. In the barn. I urge him forward, using the whip not to hit, but to tickle feet and legs that I cannot reach when I am trying at the same time to pull him forward with my other hand. He weighs 1200 pounds and I’m about 130. There is no way I can outmuscle him. When physical strength can’t get you where you need to be, you must be creative and persuasive – and determined.

 I have to get him to want to do what I want him to do – or at least to agree to it. He stands firm for a moment as I try to be patient and persuasive. I need to be firm and assertive, but not impatient or aggressive, or he will simply refuse. You can’t get angry or impatient and expect cooperation.

At length he begins to move forward in the direction I want him to go as I tickle his belly just behind his front leg and urge forward with the lead rope. I keep talking, promising wonderful things if he comes with me, and praising him for each step. Slow and jerky at first, one step at a time, then more smoothly, we walk down the path toward the barn and the arena. If you stay calm and keep trying, eventually you will make progress. Celebrate every step forward.

I know his ways and he knows mine. We have been doing this for more than ten years, this dance of competing objectives, motivations and desires. Although we both know that he enjoys a brisk rubdown with the curry comb and then a thorough brushing of his coat in smooth, long strokes; that he loves when I preen him and tell him how handsome he is; he will not be rushed into the transition from being in the paddock with his buddies to being in the barn with me. We both know that he doesn’t have to do what I want him to do; that he may agree to it, even enjoy it, but he doesn’t have to do it.   If you are patient and persistent, you may achieve what you are trying to achieve. Collaboration requires cooperation.

By the time we get to the barn, we are walking in perfect rhythm, his head low and his neck long and loose. I give him one of the treats from my pocket, and he takes it gently from my hand, using his lips to clean up any crumbs. He munches contentedly as I start to groom him, cleaning the dust and mud from a coat that emerges snowy white underneath. When I was a child, I dreamt of a white, winged horse that came to my bedroom window and whisked me away on his back for nights of adventure among the stars. Ten years ago, I found him, learned at last how to ride and somehow, improbably, he became mine. He has a sense of mischief that puts me firmly in my place when I think I might be in charge of him. This is a partnership, not a dictatorship.

We both love the dance we do together when I sit on his back and he becomes an extension of my body. Then we move as one being, and I am a centaur. I move him by moving myself in very subtle ways: a movement of calf, an opening or closing of fingers, a shifting of weight, a turn of my head. Sometimes, I have only to think of what I want him to do and he does it. Sometimes, I think he can read my mind, other times, only my heart and soul. If I am honest with him, if I am true and present and completely in the moment and only that, he will dance with me and share with me his grace and power.

And I will be healed again; made whole by the strength and beauty, the calm authenticity of this magnificent being who shares his magic with me. The simple, ancient truth of horse and human dancing together as we have done for tens of thousands of years. I may not always be in control, but I can always be part of the dance.

 These are the lessons my horse teaches me and if I am willing to learn, they apply equally to my relationship with my chronic medical condition, type 1 diabetes. I may not always be in control, but I can always be part of the dance. Sometimes, I may even lead.

© Lynda Covello, 2015. All rights reserved.

Winter Must End

(Image and text © Lynda Covello, 2015. All rights reserved. )

Okay, Winter, it’s time to let go.

We had our good times —

Bright days with sun-diamonds on the white breast of the land,

Brilliant star-lit nights with the snowy landscape reflecting the moon’s glow.

Wild runs through the knee-deep white, whooping our joy to the heavens,

Precise turns carved with sharp skiis gliding us downhill –

But it’s time to go now.

You are not what you once were, young and fresh and clean.

You’re just a dirty old man now,

And you need to leave.

Yo-Yo-Land: Monday, March 23, 2015

( © Lynda Covello, 2015. All rights reserved. )

9:50 am: Just returned from the daily morning dog-walk, I am feeling a little wonky, and so I test. The CGM (Continuous Glucose Monitor) says I’m over 4, but the capillary blood from my finger says 3.7. Perhaps not a huge difference from a statistical standpoint, but I feel the difference: at 4.2, I feel a little weak and disconnected from myself, but at 3.7 I’m dizzy and I feel completely empty inside. It’s getting hard to think. I pour myself a big glass of orange juice (about 50 grams of carb), down it fast, and sit down to wait. I know I can’t do anything relevant in this state, so I try to read the paper, but can’t hold the necessary concentration. My brain doesn’t work well at this low a BG (Blood Glucose).

Meanwhile the CGM, having been corrected with the new info, is determined to let me know I’m in trouble and the low BG alarm keeps going off every few minutes. It’s annoying, but that is what it is designed to do, so I ignore it and wait for the juice to kick in and bring my brain back to me. Five minutes go by. Ten. At fifteen, I test again, according to protocol – you have the let the sugar in the juice do its work and bring up your BG to reasonable levels and you have to give it some time to do that. I have learned the hard way that if I just keep inhaling simple carbs, I may feel better sooner, but I will start an upswing that will be hard to correct before it takes me up into the high teens or even higher.

The meter reading is 3.0.

So my BG has continued to fall, in spite of the nearly 50 grams of carb I ingested 15 minutes ago. I pour myself another glass, shorter this time, only about three-quarters of a cup – roughly 25 -30 grams of carb – shoot it down. And wait.

I hear the dog vomiting in the front hall, which he has no business doing in the house after a good hour on the trail, and I feel annoyance and confusion, but I can’t deal with that right now. I file it away for future action.

Fifteen minutes later the CGM says I’m up to 4.0, but my capillary blood test reads 6.6 and I am capable of coherent thought again. I recalibrate the CGM, and decide to have 1/16th of a pumpkin pie to consolidate (carbs, but also some fat to slow down the absorption) so that I can get started with my day’s work, because it’s already 10:30. The label on the box says the pie should be 13 grams of carb, so I consult the on-board computer and it suggests 0.80 of a unit of insulin should cover that, but reminds me that I already have 0.85 units in my body from a previous bolus. That is what is left in my system from the bolus I gave at 7:30 am and I added it because when I awoke this morning my BG was 15.4 – too high, likely from a low I treated before bed last night. That low was the result of a dog-walk as well, one that I had not planned for, but tried to manage with a temporary basal reduction of 30% and a small ginger molasses cookie (10 grams carb, according to the package). My BG was fine when I went to bed at around midnight, then the CGM high alarm went off at 1:30 am, alerting me that I was at 13.1. I woke up and gave the recommended bolus, shut off the high alarm and went back to sleep. When I woke up, the CGM showed that I stayed at 13 all night long, but when I did a meter test, it revealed that I was higher at 15.4. The CGM needs to be recalibrated every 12 hours and it was time to do that, so I did, and gave a corrective bolus to cover the current situation, plus part of the breakfast I planned to eat. I left about 0.30 of a unit out of the bolus to give me the flexibility for my daily morning one-hour walk with my dog. That is usually enough to keep me from going low after the walk, but not today, apparently.

10:48 am: the CGM is now alarming that my BG is rising fast at 9.1. At 10:56 it tells me that I’m at 10.1.

I test and I’m 11.4. I ask the meter if I should bolus for this, and it recommends not, since the corrective would be 0.80 units and I have 1.04 on board already. I wait.

I decide to check out the front entrance and there is clear yellow liquid all over the floor. It’s vomit, not pee, but I gag anyway as I layer some paper towels over it to soak it up. I can’t deal with it yet.

At 11:06 I test again and I’m up to 13.7. I ask for a recommendation and the meter suggests a corrective bolus of 0.30 of a unit to bring my BG back into target (6.5 – 7.5). I give the bolus, knowing that my whole day is going to be like this, chasing my BG with insulin and food and trying to get back to stasis. It won’t really matter what else I do today, I’m going to go high for a while and the really hard part will be not over-reacting to that, but waiting patiently for my BG to come down slowly and stabilize in the desired range. I must resist the temptation to rage-bolus when it continues to rise in spite of the insulin that I have already given it. That would only push it back down too fast and make me go too low again. I must be patient, calm and persistent until I am back where I want to be.

At 11:20 I test at 14.3. Sigh. I give the 0.20 of a unit suggested by the meter to supplement what I’ve already given. I check again at 11:53 am: 14.2.

At 12:48: 14.0. incremental boluses given as recommended. At 1:00 pm I bolus for 30 grams of carbsfor lunch.

I eat my lunch and get to work. I have email to check and problems to solve for clients. I have a jazz cabaret that I’m writing and vocal exercises to do to maintain my chops. I’m also working on connecting some people in the not-for-profit world in the arts community as well as in the healthcare space.  I have a 4:30 meeting downtown with a business colleague from Chicago who happens to be in Toronto, and then at 6:00 pm I have a workshop session for a T1D experiential education session we are putting together. I can’t afford a sick day. I have too much to do.

At 3:15 pm I test again and I’m up to 17.2. Shit! Way too high. The meter is recommending another corrective bolus: 2.20 units. I give it and wait for it to kick in.

Much, much later, at my 6:00 pm workshop session, I test again because I’m going to have some pizza.  8.0. Halleleiuiah! Of course, when I get home at 10:00 pm, I’m back up to 15.

My life is a science experiment, and I am the lab rat.

Lost in Transition

( © Lynda Covello, 2015. All rights reserved. )

First posted November 14, 2013 on www.t1thinktank.com and www.patientcommando.com

I was diagnosed with T1D at the age of 14 and a half, just before I was about to start high school in the fall of 1973. I spent August 29th in a ketoacidotic coma and most of September in hospital recovering and learning how to give myself needles. There were no doctors in Thunder Bay at that time who had the necessary expertise to help me manage my condition, and the nurses, in my experience, were often dangerously misinformed.  It was rough going, and the attitude was:  try this and see, try that and see. Bring her to Emerg if she loses consciousness.

There was no glucose self-monitoring, and the only way to find out what my BG was, was to go to the hospital and get it tested.  I did test my urine at home, which told me what my BG was several hours before. So it was kinda like crawling through a dark tunnel trying to figure out where I was going by the feel of the surfaces around me, never really knowing where I was or what was next. I was dangerously thin and the advice was to fatten me up by feeding me about 3500 calories a day, accompanied by massive doses of insulin. It was physically impossible for me to keep all that food down and I spent my days feeling nauseously full, dizzy, drowsy and weak, fluctuating between very high and very low blood sugar levels.  Then my pediatrician sent me back to school.

That didn’t work out too well. I was not well enough to function in school and the school administrators and teachers were terrified of me – or rather, of what might happen to me on their watch.  I was effectively grounded: not allowed to participate in any athletic activities, after-school clubs or field trips.  The attending GP, who was clearly out of his depth, advised my parents that the best thing to do was to send me to school, see if I went comatose, and if I did, bring me to Emerg, where they could check my blood sugar.  That was his strategy for trying to regulate what he called my ‘extremely  brittle’ diabetes.

My mother said no. My mother is my secret weapon, and her determination, intelligence and tenacity are probably the reason I’m still alive. She was trained as a nurse, but had retired about 9 years earlier when her 3rd child was born. Now, she had a 4 year-old, a 9 year-old, a 12 year-old, as well as 14-year-old me and my brand new diabetes.  She decided to keep me home from school until we got this thing under better control and I gained some weight.  Her methods were unorthodox and frowned upon by the Thunder Bay medical community, but I was not hospitalized again from that time while I was living at home. She fed me the same simple, fresh ingredients based, balanced meals cooked from scratch as we had always eaten.   I gained ten pounds and kept it on.

My days were a balance of rest, light exercise and studying to keep up with the work I was missing in school. My teachers came to the house to tutor me and were much more comfortable there than they had been with me in their classrooms. I read voraciously, which I had always done anyway, and leaped ahead in school.

I did miss out on all the social aspects of the first months of high school, though, which was brought home to me rather starkly when I was out on the driveway hitting a tennis ball against the wall of the house one afternoon and a former classmate from Grade 8 saw me and came over. He stared at me in a very strange way for about 45 seconds, and then he said:

‘Lynda? Is that you? We thought you died.’

And he really meant it.  I got the same reaction from a number of people I knew when I finally did properly start high school about a month later:  I think it was Novemberish.  I was up to date academically, even a little ahead, but woefully behind socially.  I was isolated and strange, and no one really trusted me not to die on the spot.  I was excluded from clubs and cliques, and social interaction and never really caught up. No one understood my reality, and no one wanted to be friends with me. As far as I was aware, I was the only 14-year-old with diabetes in all of Thunder Bay, perhaps all of Canada.

Sometime that month, my Aunt June, also a nurse, went to a lecture on juvenile diabetes given by an endocrinologist visiting from Toronto Sick Children’s Hospital. My mother, not considered a practicing nurse (although she had a 24/7 patient with a serious medical condition) was not allowed to go. Neither was I, merely the person trying to live with the disease, considered worthy of attending such an event.  Anyway, my aunt came out of that lecture hall and directly over to our house with the name and contact information of the endo.  My mother called our GP the next morning and said that we were going to see this specialist, with or without a referral from him.  He balked a little bit at her impertinence — nurses did not talk to doctors this way in 1973 – but in the end gave us the referral.

We went to Toronto in mid-January of 1974, my mother, father, brother and I. They checked in to the Park Plaza Hotel and I checked into Sick Kids Hospital.  While my dad and brother went to museums and art galleries, my mother and I learned the basics of living with T1D: weighing and measuring food portions, calculating insulin dosage to match exercise and food intake, learning that my ‘mood swings’ were related to blood sugar highs and lows and not just a feature of my personality or my adolescence. And of course, hearing (and seeing graphic photos of) the awful prospects of the life ahead of me: failed kidneys, heart disease, blindness, amputations and inability to have children, death within 30 or 40 years.

After a week, my father and brother went back to Thunder Bay. After another week, my mother refused to leave me behind at the hospital and took me back home with her. Oh, and did I mention that I had my 15th birthday and got my very first period during that stay at Sick Kids?  That was fun, not to mention the ongoing and acute embarrassment of being the subject of roving bands of doctors, medical students and god knows who else coming into my room, drawing the curtain around my bed, stripping me of my flimsy hospital gown and talking about me in the third person while discussing my illness.  The trauma is still with me, and I will do just about anything to avoid being admitted to a hospital.  My throat starts to close up and I fight to breathe anytime I’m in one, even as a visitor.

Anyway, in spite of all this, I worshipped the endo, because he seemed to understand the disease and he gave mom and I ACTIONABLE and PRACTICAL advice about how to deal with it.  We went home much better equipped than when we had arrived.  I never came back to Sick Kids for another appointment, but we managed to keep me out of hospital in Thunder Bay for the next 4 years or so. Then it was time to go to university.

I don’t think I had ever been more excited in my life than when I moved to Toronto to go to University of Toronto in the fall of 1978.  I had been living with diabetes for 5 years, and I had learned a lot about how to manage it. I had also learned how to hide it from others so that I didn’t have to deal with their fear and misunderstanding.  By the time people found out I had T1D, they were usually very surprised, because I seemed so ‘normal’. But I was living with a big secret, one that I couldn’t ignore, which affected my life on a minute to minute basis.

I was excited about being in Toronto where I could see my endo, but I soon found out that I was too old, at 19, for the pediatric system or Sick Kids Hospital, where he was based.  He gave me a referral to another endo who saw adults.  I MEANT to make an appointment to see her, I really did, but I just didn’t get around to it.

This was the first time I had ever lived away from home, and I knew that my parents were nervous, but also that they trusted me to figure things out. I was nervous, too, but determined to manage.  There was a lot to manage.  I had no control over the preparation, content or timing of my food. I was in residence and on a meal plan.  My inquiries as to what EXACTLY was in the food were met with blank stares and silence by the cafeteria staff.  I should have gone over their heads, but that would mean disclosing my T1D and I was afraid I would be kicked out of residence.  So I didn’t eat very much from the cafeteria, mostly fresh fruit, cheese, bread and crackers, which I knew how to calculate my insulin for.  The casseroles, deserts and ‘mystery meals’ were just too dangerous.  I bought peanut butter, crackers, and apples that I kept in my room, and that is basically what I ate from September to December. I lost too much weight again, and that complicated matters more.  I gained most of it back on my parents’ good cooking during the three weeks I was home over the holidays.

After Christmas, I went back to my diet of PB, apples and crackers, supplemented once a week by a trip to Frank Vetere’s, an Italian restaurant that had all-you-could-eat pasta on Wednesday nights for about $6. By the end of January, I was so fucked up that I passed out in the washroom on our residence floor after spending the whole night throwing up.  I was back in ketoacidosis. Someone called an ambulance and they took me to the hospital. I met my new endo in Emergency when I guess somebody noticed my medic-alert bracelet. I don’t know, I’m not sure how she found out I was there, but she knew who I was and that I was supposed to have made an appointment to see her. It was around my 20th birthday.

Everything changed after that. My new endo took me on and taught me how to take care of myself. She sent me to the diabetes education centre, which is where I spent my reading week that year, and kept encouraging and supporting me, and most importantly, mentoring me and TEACHING me how to manage my condition. She didn’t judge me based on my blood sugar results and always treated me like a whole person with a whole life, not just a patient with a chronic illness. The attitude was: this is complex and difficult, but it is your reality and you can deal with it. It should not stop you from doing anything that you want to do with your life. I will help.

The thing that strikes me as I write this is that it didn’t need to be this way. I didn’t need to get lost in transition between pediatric and adult care. The fact that my mother and I had been managing basically on our own since my diagnosis, with key help from our one visit to Toronto to see an endo did not prepare me to fly solo. Too much was changing in my life right then for me to be able to establish a new relationship with a new healthcare provider.  I needed support, but I was afraid that asking for it would mean a whole new set of judgmental, controlling HCPs who blamed me for my disease and my inability to control it perfectly.  The fact that I had a fantastic new HCP team just waiting to help me was not adequately communicated to me, and I felt isolated and helpless.

In meeting and discussion with other T1D patients, I hear a lot of people talk about how supportive the pediatric system is for T1D kids and their families. There seems to be a lot of investment and resources there, but nothing for adults living with T1D.  Once you turn 18, you’re on your own. This has to change. The American Diabetes Association, in a Position Statement published in November of 2011, says:

 “The transition from pediatric to adult diabetes care represents a very high-risk period for a person with diabetes, a perfect storm during which interruption of care is likely for multiple reasons.”

 No kidding.

Coming Out

(Photo © Peggy Lampotang, text © Lynda Covello, 2013. All rights reserved. )

First posted on August 12, 2013 on www.patientcommando.com.

So, after 40 years of following the first rule of T1D Club — Don’t talk about T1D —  and disseminating the information that I live with this condition on a need-to-know basis only, this has been an emotionally challenging week for me. ‘Coming out’ as a person living with T1D in a very public way, using my August 14 gig as a vehicle to end the secrecy and raise awareness feels terrifying.

What will people think of me now? What will the reaction be? The reason I went underground in the first place was to avoid dealing with people’s adverse reactions to finding out:

The uneducated, unsophisticated, unsolicited and dangerous healthcare advice (“Don’t eat anything with gluten”; “Stop eating any carbohydrates”; “Take (choose one: garlic/vitamin E/Omega 3/ St. John’s Wort) supplements and you won’t need insulin”; “You aren’t allowed to have sugar, so I’m not going to give you that orange juice you just asked me for, even if you say you are having an insulin reaction”; and so on, ad nauseum);

The fear and exclusion: (“Lynda can’t come to the sleepover because she might die in the night and spoil the party”; “I (teacher) can’t possibly take Lynda on the field trip; I have 20 teenagers to watch and I’m not a doctor”; “You are diabetic? Oh, sorry, we already (choose one: filled the position/rented the apartment)”;

I want to say to the world: We are here. We walk among you, undetected and overachieving because we have to work hard to be ‘normal’. But we are tough. And smart. And tough and smart beats ‘normal’ any day. You don’t know our reality, don’t understand what it’s like to be like us. So just let us be. Just let us be and watch what we can achieve. We will surprise you.