I almost had a meltdown in my podiatrist's office this morning. Dratty, ratty tears ready to spring forth as he sliced into me with his diagnosis. Yes, yes I know I have tendonopathy, an MRI told me so last week. After an hour in that MRI machine the report said "weakness in ankle tendon" more of less. But it wasn't that knowledge that cut, it was the reason my doc presumes I have this weakness. As he said, "Well, if we look at the possible causes," and mind you I really like this doctor, "there's aging and foot structure, and of course your diabetes." Ding, ding, ding.
There it was - again, and again, and again it rears it's ugly little head. My foot prescription is another two weeks in the boot and then an ankle brace and physical therapy. But where's the prescription for my aching heart? Walking is my salvation and solution; I rely on it to stay as healthy as I am. The chance that I can't continue my power-walks cuts like a knife, as does the knowledge that as good as I am, as great as my diet is, as remarkable as my A1cs are in the 5s, no matter how hard I try to keep the numbers all in line, diabetes can cause anything any day. Including meltdowns no matter how swell I live with it most of the time.
The answer? I told my podiatrist, "Next time I see you if I ask again what caused my ankle problem, you are not allowed to mention the d-word. You must tell me aging is the culprit. I don't mind that since everyone I know is aging. We had a laugh and he got, I mean really got how telling a patient fairly casually that their diabetes might be the cause of something can be highly emotionally loaded. So maybe I used my "teach one person about diabetes" command from Tuesday's Diabetes Alert Day today.
Just to let you know tomorrow I fly to Spokane, Washington to deliver the A1c Champion presentation at Rockwood Clinic where 1,000 people are expected. Then for me it's play-time in San Fran. This blog will go quiet for about 10 days.
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 sad statement that we're canceling more information getting out there about diabetes.
I read on Amy Tenderich's blog, DiabetesMine, this 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.
You create a new world...
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.
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.
5 weeks in, can't wait for out.
I haven't mentioned it before but 5 weeks ago I hurt my ankle. Really hurt it. I either tore a tendon, tore a ligament or have a severe stress fracture. Although I've been to my podiatrist twice now, the diagnosis is still unclear. The X-ray showed no break and while the doc didn't feel I needed an MRI, I figured if my insurance paid for it I did. I want to know we're doing everything possible to get this fixed as quickly as possible (which already seems impossible after 5 weeks) because not walking is having several unpleasant effects on me.
1) If I ever needed confirmation that I'm more insulin-sensitive when I exercise I have it. I've had to up my Lantus from 12.5 daily units to 14, and add an extra unit or two to most of my boluses. Granted, I use little insulin compared to many, but for me this change is no less significant or upsetting. My blood sugar's been far less well controlled and predictable. The first week figuring out the new numbers was an exercise in frustration, irritation and downright pissed-off-edness.
My one hour walk around the park I saw, plain and clear, had been performing blood-sugar control magic. Part of that magic was my numbers were better the whole day, and relatively similar day to day, so fairly easy to predict. There's the second unpleasant effect - losing that predictability. Once you get your routine down, you know that having it wrecked feels like starting all over again from the day you were diagnosed. Yet I didn't know just how unprepared I was for retooling again or how much it would bother me. By week two, maybe three, I had made the adjustments, but frankly still resented that I'd had to. Ah, that pothole again I spoke of many, many posts ago. You're zipping along and then wham, something unexpected causes you to go on tilt again.
Unpleasant effect number 3) While I don't think my one hour walk causes any weight loss, it does keep my weight in check. Now, in contrast, I feel the fat deposits around my stomach and thighs swelling. My resentment of my body's failure is now on two fronts, foot and fat. Of course that's on top of the underlying resentment - that I work hard at having good control and being immobile has made my diabetes uglier to manage. My resentment obviously peaked two night's ago when I ate everything sweet in my house: gingerbread, chocolate, halvah, and washed it down with too much wine. That was me hitting the brick wall. Thank god that's over, now I can move on. Of course after I tell you the last unpleasant effect - my mood shift.
4) I've basically been a very unpleasant person around my husband, whiny and petulant. Good soul that he is he hasn't filed any papers, instead he just left for Holland. Of course, he works there so I don't think the two are related. But being housebound and not being able to scoot from here to there, having lost an enormous sense of freedom and spontaneity, not being able to clear my head outside my immediate environs, see endless sky and be a part of life all around me, has deadened something in my spirit. We are social animals, after all, and my social life is largely apartment-bound.
So, what's the message? I don't really know. Am I just verbally vomiting? Maybe. Interesting though that I picked the day I'm actually feeling better to write this. Maybe this little patch of light creeping into my head today is offering such relief and hope that I dare to look at how poorly I've been feeling, and get back on track.
You should know, while I preach looking for the good in things, which I absolutely believe is the way to go, I am like you a student and a work in progress. So putting my own, look for the good, words into practice I could say from this little experience: 1) I have more compassion for people who are struggling with their weight or are incapacitated in some way. I really, really do. 2) I am reminded (seems to be one of my life lessons) that I don't have to overachieve to feel I've achieved something. My ankle debacle came from taking my daily walk too aggressively - not missing a day - walking faster than usual - walking another hour most days as well - and then this overloaded ankle twisted in a pothole on a city street. All that effort I put into my walking to more aggressively keep my weight in check, all that speeding up has brought me to a standstill. That concern with weight comes from having been a heavy teen. My, my, such old programming still exists! That concern with overachieving is just more of the same entrenched, old programming. Seems my head needs to be re-booted. Well isn't my current condition delivering the perfect symbolic message!? (See photo)
Then too, maybe I caused this because in the world of Louise Hay, spiritual teacher, my world is shifting rapidly and I am a little frightened of all the new things I'm taking on and all the new places I'm going. Did I slow myself down so that I could control it all, because I am an uber-controller? Not of others, just myself. "What I know for sure," as Oprah would say, is when I'm faced with big, new things that feel overwhelming, my first impulse is to freeze and fear. But then what gets me through is to chunk it down into small steps. To take one small step at a time and create a small success. One step, one success builds me a road to the next step and the next success. Just writing that is soothing. So I could say tallying my accumulated good the last one is, 3) I have been reminded that this small-step approach is what I need to do with all that's in front of me.
After all, the only race I'm in is the one I've created in my head. I guess my deeper wisdom knew that I needed to remember that. And like the tortoise and the hare, sure and steady wins the race. I just wish all this knowing had come to me in a dream, while slumbering peacefully in my space-age tempur-pedic bed, not in a pothole on 81st street. Then again, I could choose to see this whole affair as a symbolic, celebratory "kick-off" of all the many good things yet to come this year.
This Wednesday evening, 6-9 P.M, Divabetic is hosting its national Makeover Your Diabetes event at Gotham Hall (1356 Broadway @36th Street). I'll be there so come on out and glam, learn, have fun, mix & mingle and get your questions answered by diabetes educators. Make sure to pre-register.
In my last post I touched briefly on the importance of the systems in your life to support your diabetes management. Systems-talk is generally heard relative to companies seeking ways to improve processes in order to increase profits and save time and waste. But doesn't it make perfect sense that the same holds true for managing diabetes? Our systems either make us successful with less cost in time and energy, or foil us. Back to the company analogy, no matter how dedicated employees may be, if they're working within a system that doesn't support their intentions and efforts, they won't accomplish their aim. Similarly, no matter how good your intentions, if your systems do not support your best efforts, success will evade you.
What does this really mean? We all have some kind of system we work within for the daily or weekly tasks we perform regarding our diabetes management. For instance, you have a system for feeding yourself - it may be skipping breakfast, eating a yogurt for lunch, then a candy bar in the mid-afternoon, and having dinner at fast food drive-ins half the week and pulling frozen entrees out of your freezer the other half. This system doesn't support having your best health, let alone a desire to lose 10 pounds. A better system would be having a healthy breakfast, a larger healthy lunch and skipping the candy bar, and, going to the supermarket once a week to bring home nourishing foods. You might cook a week's worth of dinners on the weekend, freeze them, and one day a week greet the loud speaker at Burger King, McDonalds, KFC or your fast food joint of preference.
Trust me, you have a system for everything. Take refilling your meds. It may be you open your pill bottle and you notice it's empty, you grumble or shriek and then go to the pharmacy or call your doctor. Here's another system that might be less stressful: when a new bottle of pills come into the house, if it's for a 90-day supply for instance, write on a calendar 75 days from that day, "Reorder meds."
Think about how diabetes fits into your day, or doesn't? Is it the last thing you always seem to contend with? If so, your systems are not very efficient or supportive for managing your diabetes. How about your emotional system? Do you let loved ones help you in some way or shoo them away? Do you do enough of what you love to replenish your energy and positivity? If not, can you schedule that into your week?
The good news is you designed your systems, consciously or unconsciously, and can change them with a keen eye, some creative thinking and practice. Look specifically at what you're having trouble with and then look at the system behind it. For example, if you forget to take your pill before lunch because you're always stressed at work, or running into a meeting, how can you remedy this? Can you put a note where you'll always see it just before lunch? Dan you keep an extra pill in your wallet if you carry your wallet or purse into meetings? f you've been trying hard and not doing terribly well, don't blame yourself, blame your system and then revise it.
My system for taking my blood sugar approximately 5xday includes keeping my meter always in the same place, on my kitchen counter, my test strips always in my meter case, my lancing device always on my kitchen counter. I work at home and this works for me. If I'm out of the house, I take my smallest meter with me so I can always test.
My system for eating is to buy mostly fresh vegetables, fruits, chicken and fish and do most of my own cooking. Every morning I make a bowl of steel cut oatmeal. Almost every lunch I have a spinach salad with an assortment of veggies, beans and some feta cheese. I mostly steam vegetables and broil or saute meats and fish for dinner. I eat beans in replacement of higher carbs, for instance, rice, pasta, potatoes. The few freezer products I use don't have any added butter, cream, etc. I use vegetables a lot as foods to fill up on, and crunch on, when I need something crunchy. I like nuts for this too, and yes, I have to be careful not to sit down with the whole jar. I notice when I run out of healthy foods, I begin to reach for less healthy foods (my husband's stock of crackers, licorice, etc) so part of my system is to always try as I can, keep an adequate supply of healthy foods in the house. I make sure I have 85% dark chocolate in the house and cocoa powder so when I need a sweet I can satisfy my sweet tooth and not go crazy. If I don't do this, I'll eat everything in my house and still feel unsatisfied.
My system for exercise is to every morning take a one hour walk around my local park typically from 9:30-10:30 A.M. Just after checking my email and before getting into any major project. If I miss my walk because I have an appointment, I try to fit it into the late afternoon. If my appointment is in the city, I'll walk 40 or 60 blocks when I get out of my appointment to a subway station so I fit my walk in that way.
My system for emotional health includes doing lots of things I really enjoy that make me feel purposeful, and I get the rich reward of serotonin, the feel good brain chemicals from helping others. I spend time with friends who nourish me. I love reading and movies and indulge in both. When times are tough, I reach out to my partner who always listens and then see how much good I still have in my life. If all else fails I do something guaranteed to bring a smile, look at the pictures in my wedding album, call a dear friend across the country or just leave my house and go somewhere else from where life looks different.
I'm only telling you about my systems to give you an idea of how systems work. Admittedly, I have a lot of lattitude working for myself and working at home. I don't want you to compare what you to what I do. I want you to look at your systems and your life and see if your systems support your best efforts and if not what can you do to improve them?
Here are some questions to stimulate your systems-thinking:
Q: Where are my supplies? Are they handy? As I said my meter is always on my kitchen counter making it easy to find and grab, no searching that might lead me to say, "oh what the heck, I'll test later."
Q: Am I always running out of my meds or test strips? Why? Can I guesstimate when it would be time to order more and work out a system for this? Is my husband or wife always at me about this and so do I put off reordering my meds just to bug him or her? Can I remedy this by having a heart to heart talk with my loved one and then do better for myself?
Q: How can I avoid all the tempting foods always at work from parties and meetings? Can I keep a healthier replacement treat at my desk, or give myself a reward when I pass up temptation like a movie or little trinket?
Q: I only seem to be getting to the gym a third of the time I'd planned because work or family obligations get in the way. Can my family help pick up some of the load by taking over some simple chores?
Looking at your systems, start with the assumption that it's possible to refine them. And remember, to improve you can't do what you've always done and expect different results. Sounds like common sense, but many people will often spend their energy trying harder in a failing system than change their system.