The circle of diabetes, we are seen and unseen

 

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I took my weekly walk to Trader Joe this morning and as life sometimes serves up unexpected connections I found the woman behind the cash register has a son with type 1 diabetes. She told me reading the logo on the jacket I was wearing. 

He got it at three and is now fifteen. I felt our immediate bond as she packed my greek yogurt both smiling and looking apprehensive. She told me his A1C,  and her concerns. “How will he ever be able to take care of himself? I worry,” she said. I was surprised, why wouldn’t he be able to take care of himself? We find our way.

As I swiped my credit card she told me she’s heard there should be an artificial pancreas in his lifetime and this would really help. I said with some confidence that I thought probably within ten years. Then she said, “but still I don’t know how if he’ll be able to take care of himself.” As the eggs went into my bag, I heard her say “autism.” I had missed it earlier. Yes, her son has type 1 diabetes and autism. My heart heaved for a moment.

There are many times I feel invisible with this disease. No one notices all the work I put in behind the scenes to stay well. Certainly no one in Trader Joe knew I had diabetes, including the woman now ringing up my sale, until my jacket started a conversation.

Before lifting my bag of groceries, I took her hands in mine. She said, “I hope it will be OK.” I thought what can I say? I said, “I hope so too” and over a shared smile, turned and walked back into my life.

I relayed this story to my husband over lunch. I said, she must feel the same as me, unseen. How many people know her son has type 1 diabetes and autism? How many people know how hard she works to help him and her worries for his future? I wonder do her co-workers know? I can’t imagine. 

In telling my husband this story he said, “Write it.” And so I have. 

Let’s all cancel diabetes today

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Today is something I just heard about a few weeks ago called ‘Diabetes Alert Day’. Apparently it’s the 20th year the American Diabetes Association has been recognizing this day about alerting people how to prevent type 2 diabetes. 

The reason I became aware of Diabetes Alert Day is because I was asked to give my A1c Champion presentation today as part of a larger diabetes health event  at a hospital in Brooklyn. A week ago I was told the event was canceled. Frankly, I don’t know why but I do wonder why and think it’s a sadstatement that we’re canceling more information getting out there about diabetes. 

I read on Amy Tenderich’s blog, DiabetesMinethis morning that you might want to be your own spokesperson and today tell two people about diabetes. I think that’s a great idea. Here’s another: Since they cancelled Diabetes Alert Day, let’s cancel our diabetes today

By that I mean, today do what Dr. William Polonsky, CDE, psychologist and founder of the Behavioral Diabetes Institute advises we should be doing every so often to avoid burn-out – take a “mini-vacation from diabetes.” Put down your fears (that’s my advice), maybe test once less today, have that bagel, and give yourself a break. 

Until we can cancel diabetes for real, I think we have to give ourselves a pink slip every now and then. 

 

Your mind – what a terrible thing to waste

You create a new world…

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If you read my article below and came up scoffing, “Of course I’d give up my diabetes!” I get it. Of course I do. Hold that thought, and let me introduce another.

I’m participating in Oprah’s online book class reading Eckhart Tolle’s book, A New Earth, Awakening to Your Life’s Purpose. Every Monday night they are teaching a million people around the globe that the only thing that’s real is this very moment, and the only thing that creates happiness is accepting this very moment completely as it is. That doesn’t mean a new watch, house or mate, perish the thought, might not make you happy, but that happiness is not lasting. You know that; think about the things you couldn’t wait to have. You got them, they made you happy for a while and now you barely notice them. Of course, this does not go for your mate, or maybe it does. 

Anyway lasting happiness comes from being at peace and accepting how this very moment is. That leads me to say this – in this very moment you have diabetes. If you have type 1 diabetes you have next to no “choice” about “giving it up.” If you have type 2, you can affect it, yet not lose it. What you do have is a choice about whether you accept your diabetes in this very moment. How you see it, react to it, be with it, talk about it, live with it, this is your “choice,” and, your seat of power.

Language is a powerful influencer of how we experience life. How do you talk about your diabetes to yourself and to others? Words flood into our brain so quickly we don’t even realize we are putting them there. Unconsciously they create a picture, emotions attach to this picture then we base our actions on this.  The good news is we can change this chain of events with awareness and a desire to do so. 

Just look at some of the words around diabetes and how they color things. We “test” our blood sugars. Naturally you feel like you get an ‘F’ when you don’t like the number. Tell yourself instead that you’re “monitoring” your blood sugar so you know where you are and can take appropriate action. You’re not “Failing” but “gathering information.” You’re not “judging” yourself for the number but “learning” from it.

Do you call yourself “irresponsible” or “stupid!” when you don’t manage your diabetes the way you think you should? Do you tell yourself, “I’ll never get this!” or “this is too hard, forget about it!?” and then give up?

See the connection between what you tell yourself and what you do. While this is probably uncomfortable right now, say to yourself, “I have a good life and diabetes doesn’t take away from that. In fact, it’s actually given me something that I appreciate.” Do you laugh at this or immediately dismiss it because you think it could never be true for you? How you relate to this statement is likely showing up in your life. I’m not saying diabetes is a joy-ride, but how we look at it and talk about it — to ourselves — and to others, creates our experience of it, and, frankly how we manage it.

Changing your words is one way to begin improving your management. You can also get similar results working in reverse.

Take more positive actions no matter what you think and tell yourself right now. Taking more positive actions will begin to give you better results. This will cause your beliefs to start changing and as day follows night, your words will become more positive and supportive. Remember the old line, “A mind is a terrible thing to waste”? It was a commentary on how drugs destroy our mind. Frankly we waste our mind every day if we fill it with junk words and thoughts. Like drugs, we are completely under their influence.    

My motto, “thrive” over “survive” living with diabetes is a bit of simple, catchy wordplay, ’tis true, but it’s also a powerful affirmation. Today watch what words you put into your head and say to others. Do your words support what you want? If not, try speaking some that do. They may feel disingenuous at first but over time they will start to live in you.

Different words will open a new window and instead of all the garbage that typically flies in around you, you might find something absolutely amazing and beautiful alights on your windowsill. 

Would you give up your diabetes?

 

1971 B.D. – Last photo (before diabetes) with my mother

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2007 A.D – 35 years (after diabetes), with my supportive other half in work and life

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Which part to unplug?  iport, insulin & meter or my work, purpose & contribution? 

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The cold and blue reality…

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…and the work I do: teacher, advocate, writer, speaker 

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A few months ago I interviewed a young woman who had type 1 diabetes, and then she didn’t, and then she did again. She was “cured” of diabetes for a time through two islet cell transplants. She had an infusion of perky insulin-producing islet cells, which meant that after taking insulin for almost twenty years she didn’t have to take it anymore. Unfortunately, after 18 months the cells began to fail and she was back on insulin.

When we spoke she had listed herself on the pancreas transplant list to get back what she called the “freedom” in her life, that of being insulin-free. I thought it extreme to undergo the knife in a risky procedure where you’d have to take auto-immune suppressant drugs the rest of your life and the transplanted pancreas would only be good for about 10-15 years, if lucky. She, on the other hand, had difficulty imagining how I live relatively harmoniously with my diabetes. And, she posed the question to me, “Would you give up your diabetes if you could?”

Before I go there I need to give you a little more background. I interviewed this woman several months ago. Then when I released my new book, The ABCs Of Loving Yourself With Diabetes, thinking she might profit from many of the lessons it contains, I emailed her a note. She sent me this email in return, “FYI – I have taken myself off the transplant list for the time being.  After meeting you – I decided to give it a shot being diabetic again. It is not always easy – ups and downs (as you know) but I am officially diabetic again.”

I was stunned frankly because at the time of our interview she had said, “If a new pancreas gives me only 5 years of insulin-independence I will take it. Five years of reversing complications makes the risk worth it to me, to be free.” Yet now she was telling me she had reversed her decision to get a new pancreas.

Before the islet cell transplants, this woman suffered from severe hypoglycemic unawareness – she couldn’t feel when her blood sugar was dangerously low. She had countless episodes in the last ten years of nearly falling into a coma; it could happen walking to work, driving a car, while in a meeting or lying in bed.

While the islet cell transplants didn’t keep her insulin-free in the end, they did return her warning symptoms of low blood sugar. “Since the islet cell transplants,” she said, “my husband has not had to wake me up in the middle of the night to see if I’m still alive. He used to do that every single night.” So for her, the islet cell transplants created a dramatic increase in her quality of life. Of course I could understand the decision to have that done. But now that she gets the warning symptoms of low blood sugar and is like the rest of us ordinary type 1s on insulin, was a pancreas transplant worth it? There’s the risk, and when you think about it, as of course I began to, who would you be without your diabetes? If you’ve had it a long time, like me it’s probably shaped your habits and become part of your identity. Early on in our talk she was adamant that the freedom of being insulin-free was worth the risk of a pancreas transplant. How giving up diabetes affects identity, we probed a little later.

She got type 1 diabetes as a teen and grew up in a house where she was not fussed over and so became hugely independent, responsible, hard-working, earnest and a perfectionist at a very early age. It serves her now working toward partnership at a prestigious Manhattan law firm. In fact, at thirty she has all the earmarks of a hard-driving, intelligent, ambitious fast-tracker. Sitting in an office high atop Manhattan, I felt utterly out of place in my opposite lay-back researcher and journalist mode, and faintly amused as she checked her blackberry every ten minutes. She was well-thread and somewhat officious. But there was also a little-girl quality, a kindness in her quick apology for checking her emails and an openness I wouldn’t have expected.

She gave me two hours of her time that morning, precious time, and it was toward the end that she told me she’d placed herself on the pancreas transplant list. At that point I asked, “Since you now get symptoms of low blood sugar why go through this surgery?” She said, “At least I could say I did what I could to be free of this disease. There’s something about being free from diabetes that gives you the courage to try again. I also want to be part of the research, to be able to speak about it and show kids that being-insulin free is possible. Since I was 11, when I asked the nurse, “Will I have to take shots for the rest of my life? and she said, “Yes, diabetes is incurable,” I thought, I’m going to prove the doctors wrong someday.”

Then she asked me, “Would you try to become insulin-free if you could?” Interesting question. I don’t suffer from hypoglycemic unawareness so I wouldn’t be a candidate for the islet cell transplant, but if I did I would have made the same choice to do it as she did, that’s a no-brainer. However, if my diabetes then came back as hers did, along with the warning signs of low blood sugar, would I go further to be diabetes-free?  “No,” I said, “I wouldn’t have a pancreas transplant. It’s not worth the risk to me and the short shelf life.” And then I thought further: What would it mean to give up my diabetes?

A fellow A1c Champion told me last year if they could take away her diabetes she would not do it. She gets too much pleasure and sense of worth from her work now helping others with diabetes. Would I give up my diabetes? It’s a fantastic notion to one day not have diabetes anymore. To eat whatever I want, whenever I want or not at all. To not take shots or finger pricks. To not consider if I’m walking today. All kinds of thoughts tumbled into my head. Those were all pluses, but I also thought I would fear gaining weight if I didn’t have a built in reason to watch what I eat and exercise the way I do. My diabetes is now my work, I’d be giving that up. Then there are the friends I’ve made because of it. To be just like everyone else, no longer special from hefting this extra burden and feeling oh, so, virtuous. What would that be like? 

“When I listen to you,” she said, “I hear that you’re resolved with this disease. You say, “This is what my life is and I have learned to navigate this way. It’s interesting for me to hear your perspective, it makes me happy to hear someone can do this.” I knew she meant it, her voice became softer, slower, and I could see her thinking about a similar possibility for herself.

She also told me toward the end of our talk that diabetes had also given her something, “It’s so funny because I want to get rid of it so badly,” she said, “but it’s who I am too. It’s a hard disease but it’s changed me for the better I think. I wouldn’t be such a good person had I not had it. As much as it’s been an enemy it’s also been a friend. I don’t think I would have accomplished all that I’ve accomplished. I often say diabetics are typically more motivated, capable and amazing, because they have to overcome so much to achieve what they achieve, it makes one a better person. 

“I’m wondering,” she continued, “if you would want to experience being free from the disease or if the disease has become such a part of you that you would miss it in some way? This happened to the first transplant patient at my hospital. He just let the new cells die. It was like he lost himself when the disease was gone. The disease was who he was and he couldn’t deal when he didn’t have it. I wonder,” she continued,  “if in my own life I had made the disease part of me more, maybe I’d be better capable of dealing with it. When I was younger I was embarrassed having diabetes because it meant I wasn’t perfect. I didn’t want to admit it even to myself.  But you probably can’t understand why I feel this way about a transplant.”

I said it was hard for me, and then I gave her my answer to her question, Would I give up my diabetes? “I don’t know,” I said. I suppose if you tied me to the train tracks and made me say “yes” or “no” before the train arrived, I’d give you a better answer, but for now that’s my answer. I don’t think of myself like the young man in the hospital she described who couldn’t let his identity as a diabetic go. I’m just not sure if the choice were really available what I would do. I can imagine my list of pros and cons might be of pretty similar length.

In any case, when this woman’s email crossed my inbox not so long ago and she told me she had taken herself off the pancreas transplant list, I was very moved that she found something in me and how I live inspiring enough for her to re-think her decision. I don’t pretend to know what’s best for her nor flatter myself that I alone was her motivation. I sensed although she presented a firm front that she was struggling with her decision when we spoke. But if I gave her a snapshot of life with diabetes where one can find peace, then I’m grateful.

Would you give up your diabetes? Your knee jerk reaction is likely “yes.” But when you think through it you might find a very intricate web of emotions that reveal just how much a part of you it has become. Anyway, something to think about, as I hope this blog always offers you. It would be nice to find out in a year how she feels about her decision. In the meantime, I’d love to hear what your decision would be and why.

The emerging trend in chronic illness

Screen Shot 2015-02-08 at 2.58.07 PMFind the balance where you manage your illness well, and, really enjoy your life  

There is a slowly emerging trend in chronic illness, very slowly emerging, but you can see elements of it here and there. I have referred to it before in books I’ve read like Richard Cohen’sBlindsided about his multiple sclerosis and his newest book, Strong at the Broken Places, that profiles people with a variety of chronic conditions. There’s Jill Sklar’s book, The Five Gifts of Illness about living with Crohn’s disease, and now my own book, The ABCs of Loving Yourself with Diabetes, featuring a new approach to living with diabetes.

The emerging trend in chronic illness has various components. Here are some of them in no specific order:

1.To live with illness from a different perspective – that of using your illness as a catalyst to find greater joy, purpose and meaning in your life.

2. To see the patient as the central figure in managing his or her illness, rather than the health care provider (hcp), although hcps are essential for information, education, direction and advice.

3. The hcp acts as a coach to collaboratively, with the patient, create a  treatment plan that really works for the patient.

4. Hcp and patient together examine the patient’s “life systems,” ie cultural mores, food preferences, family structure, support network, neighborhood advantages or limitations, work etc. in order to design a treatment plan that will work in that individual’s unique life.

There’s an interesting article on a management blog that speaks to these points  titled, “Why patients have to be doctors today” It’s worth a read. The article looks at diabetes in particular not so much as a medical condition, but from the point of a chronic condition that need to be managed by the patient. It is a bit lengthy, but don’t let that scare you, nor some of its “management-speak.” You will get an insightful view regarding what supports good diabetes management and what patients and the medical community are coming up with.

I wonder what has tipped our gaze now to look at chronic illness through this prism of patient management and what can be gained from illness. I would imagine it’s because we have new medicines and procedures that allow us to live longer with illnesses that would have killed us decades ago. With someone getting diabetes every 10 seconds around the world there will only be many, many more individuals, and by virtue of that, also families living with chronic illness.

What we need now is for our medical professionals to be trained in chronic care so that they can help patients better, and I’d want to say best, their quality of life within the parameters of their illness.

Since doctors are trained in curable illness – diagnosing, medicating, cutting and curing, there is little in their toolbox to help those of us with life-long conditions. But I see some headway and as “Why patients have to be doctors today” points out, it is a movement starting on the ground with patients supporting and counseling each other as many from the inside report peer-coaching will be the next wave in chronic care. We see it evidenced already on the health and community web sites popping up every day, and programs like my own A1c Champion program, where I, merely as a fellow patient, deliver motivational diabetes presentations to diabetes patients.   

It is my hope that my contribution in diabetes will be to help people see that if you look at diabetes through a different lens, you can use it to create a bigger, more fulfilling, more meaningful and healthier life than you may even have had before. It would be nice to think the medical community is not too far behind me.

The exhaustion of chronic illness, or when bad things happen to good people

I’ve generally been a “good” person. I try to do those ten things on Dalai Lama’s list. You know, be kind, not hurt others, let people know you love them, hear a tree when it’s falling even it you’re not there. In addition, there are my hard-wired Virgoan traits: I’m responsible, loyal, a good friend and hard worker. 

When I got diabetes at 18, after the “Why me?” stage passed, and the denial stage passed, I got back up on my feet and learned to manage this damn illness. Not that it was easy or simple, but it’s happened over days and weeks, months and years. I changed some behaviors, like eating smaller portions and more recently practically vacuumed carbs out of my diet. I’ve made walking a daily ritual and caught up on the newest insulins that have made this so much easier to manage. I do well enough that these past few years my A1cs are consistently in the 5s, and my routine is integrated, quite well, into my life. Amend that, my routine is my life, but I don’t mind, it works for me.

So here’s the thing: even with all this hard work, commitment, dedication and do-goodedness, every once in a while there’s a bump in the road. And I resent the hell out of it. “I’ve been good,” I’m screaming inside. “How can you do this to me!” “Is this how you repay me!? I don’t deserve this!!!” Don’t ask me who I’m talking to, some great Kahuna out there.

I am totally brought up short when something bad happens due to my diabetes. And something seems to happen every few years. Once again I have to face and deal with the fact that I don’t know what’s coming around the corner no matter what I do. And, I resent that the road I’ve worked so hard to make so smooth, has potholes underneath. 

Getting a second frozen shoulder six years ago, the year I was getting married, that required surgery and a three day hospital stay, was a pothole. Discovering, after 32 years of annual eye exams, with my eye doctor always astonished at the health of my eyes, that I have a slow-growing cataract, deflated me. Getting an official diagnosis a day before I left for Europe a few years ago, that I’d lost 25% of my hearing, devastated me. That wasn’t a pothole, so much as a crater. And I cried and cried in the Amsterdam train depot while telling my husband. It’s not widely written about, but hearing loss is associated with diabetes just like vision problems. The small blood vessels in the ear canal are just as susceptible to damage as those behind your eyes. O.K, buck up I said to myself looking around at all these tall blonde people eating herring. Life goes on. I’ll go on. And I righted myself and continued my march valiantly forward.

Last week another pothole opened. Oddly this one’s not due to a complication of diabetes. No, this one’s from trying to make my diabetes better. After so many years of taking injections, I, like most, have developed a significant amount of scar tissue where I inject. Shots now hurt somewhat, and I take between 4 and 7 injections a day to keep tight control. Last year I’d heard of a device called iportand when I saw it recently, I decided to try it. It’s a small, round plastic disc and like a pump, it has a little plastic tube that sits inside you through which to deliver insulin. Unlike a pump, it’s not attached to an insulin cartridge, so you stick your syringe through it’s little rubber stopper, plunge, and the insulin goes through the little plastic tube and into your body. So now, instead of feeling the prick of 12 to 21 shots in three days, I only feel one prick, when I insert the iport. Hallalujah, I thought the first day. The iport didn’t hurt going in, although I’d been told it could, (an inserter is planned to be on the market early next year) and I barely noticed I was wearing it all three days. Wow, I told my husband, I kind of feel proud. When he looked at me quizzically, I said,  “Well, I’m an early adopter. I’m doing something pro-active for myself, taking a new step.” Then I discovered I spoke too soon.

The second iport I put in hurt. When the insulin didn’t leak out I dismissed the first reason it might hurt, that there was a crimp in the plastic tube. Yet, that spot where the iport tube sat inside me felt sore over the entire three days. My initial feverous joy of being free from injections and pain burst into a million little pieces. I caved; this pothole turned into a crater. I held back tears for the final two days of wearing it. 

After 35 years of living with diabetes, trying to make the daily tasks, which I’ve accepted and perform (because I’m a good person) religiously, a little easier, that scar tissue that’s built up over those decades of injections conspired with the iport to hurt and humiliate me. (Yes, I could have removed it, but I’m good, you remember, responsible, committed) So, now, if I have 30 years of scar tissue, mostly in the same place, my abdomen, which is where I’d likely stick this thing so I can see and reach the little rubber stopper to inject, how can I benefit from this new device that could be really helpful? I’m pissed. But more than pissed, deeper than pissed, I feel penalized, tricked, cheated, saddened and maddened. I feel utterly betrayed, disappointed, and sorry for myself for all those years I’ve been so diligent taking my injections. Of course, this isn’t rational thinking, but what emotional tornado is? Why do bad things happen when I’m being so good?  

I told a friend who’s used iport now for almost a year, and who has mentored me through this, “You know, P…., I realize I’m just exhausted. This experience has taken so much of my energy: to get the iports, worry through the insurance procedure, gear up for a possibly painful insertion, contact the company twice when a rep never called me, to have to now track when to insert and remove the iport, to watch for tube crimping and see that my insulin really gets in, to wonder where everything I wear will fall against it.” Of course, I think this is about my being exhausted in the larger sense: from all these days upon days of ordering and keeping track of all my supplies, remembering to change my lancets and syringes, the daily food, exercise and insulin calculations, we could go on forever. What also dawned on me was that this experience killed my hope; that I could have made something better for myself, something easier and less painful with this disease. And I deserve my hope because I’ve waded through the river with diabetes for so long, and stayed afloat. And I deserve this device to work for me because I’m a good person.

Five days later I learned something else. When I began this piece I was thick in the middle of this emotional storm. Now it has passed. I have a new iport on. It didn’t hurt going in, I don’t feel it now, and I’m enjoying the freedom it gives me from painful injections. I learned, for the umpteenth time, that everything changes — problems, circumstances, feelings, thoughts. You just have to ride it out, whatever it is, and know it too will change. And while bad things happen to good people, I have my hope back that more good things happen than bad.