Diabetes Self-Management Blog

Last week, I introduced what I believe are the three categories of diabetes self-management — none at all, obsessive, and educating yourself to the point of living life the way you want to — and discussed the first two. I’ve been through the first two categories and have been living successfully with the last one for several years now.

Going through the first category was because I didn’t know anything about diabetes and didn’t believe Type 2 was the “bad” type. More specifically, about all I was told was to follow an American Diabetes Association exchange diet, which I referred to as the “white bread diet,” and given a long list of “no, don’t, can’t.” Don’t tell me “no, don’t, can’t.” I dig in my heels and say, “Watch me.” (Although today, I’d just have to dig in my heel.)

Why the second category? The obsessive one? I’ve thought about that a lot. Because obsessive just isn’t me. When I was diagnosed with Type 2 diabetes in 1986, my fasting level was 311 mg/dl. I must have had diabetes for a long time. By the time I got to an endocrinologist and saw a nurse educator and dietitian, my HbA1c was 17.4%. I had a thirst that couldn’t be satisfied and was either sleeping or running to the bathroom. I felt like crap. I was afraid to drive. I was barely making it through my days at work as, at that time, administrative assistant to our mayor.

One morning the mayor walked in, took one look at me, and told my assistant to take me to the emergency room. “If nothing’s wrong,” he said, “you’ll feel relieved. If something is wrong, you’ll get help.” That day, I got my first injection of insulin. I gave it to myself. Shortly after that, a friend told me about endocrinologists, gave me the phone number for the group her Type 1 daughter went to, and I made an appointment.

Once I began to feel better, I became obsessed. I never wanted to feel rotten again. I was energetic. My husband noted one day that my cheeks were pink. I wanted to go out. I wanted to dance. I wanted to do what, you know, married people do.

I was on a regimen of Regular and NPH, taken in specific doses at specific times and eating specific amounts of carbohydrate, again at specific times. My control was fantastic. “I’d kill for numbers like those!” a Type 1 friend told me.

“This is the way to go!” I told myself. And others. But I really wasn’t happy. I didn’t like watching the clock. I didn’t like trying to plan meals around 60 grams of carbohydrate, or snacks with 15 grams of carbs. I think I was manic. As somebody who normally reads several books at once, I couldn’t focus enough to follow a Reader’s Digest article.

I told my endocrinologist I wanted to go on a multiple-injection regimen. “But you’re a Type 2 in good control!” he exclaimed.

At the time, I couldn’t voice it to him, but later realized that having my diabetes in good control didn’t equate to being in good mental health control. In reality, I was extremely depressed.

I went farther. With the help of my diabetes education team, I began to learn more about how to fit diabetes into my life instead of having my life revolve around diabetes. (Admittedly, you can’t totally ignore caring for your diabetes at any time. But you can learn enough to put yourself on autopilot for the most part.) Bless Sonja, Amy, Sheila, Sandy, Gail, and all of the others who helped me learn!

My next step was to get an insulin pump. I’ve been pumping for…maybe 12 or 13 years now. Lemme see…I’m on my third pump now and I don’t automatically get a new one when my 4-year warranty is up. This one expires in December. It took me a while to get my endocrinologist to recommend one for me (“but you’re a Type 2…” I used to get that a lot!).

I read a book all the way through for the first time in two years or so. It was Like Water for Chocolate.

Today, I’m out of that cramped box labeled “diabetes” and spreading my wings. I make mistakes. I’m human. You may have noticed I tell you when I flub. I want you to know that you don’t need to be perfect. And you can’t be. Nobody can. But you do need to get yourself back on track instead of telling yourself, “I’ve failed so there’s no use trying again.”

Sometimes I eat the “wrong” things. But are they really “wrong?” Using your meter, learn how to eat the things you like. (Check when you take your first bite, then again two hours later.) Most of the time, I eat healthfully. Sometimes I don’t. (I’m more likely to tell you when I don’t.) I’m still trying to figure out an aerobic activity I can handle with my new circumstances (one leg doesn’t go all the way to the ground). I used to ride a bike every day. Will I be able to do that again? I hope so. Water exercises would be great, but there’s a problem. I can get into a pool. Heck, you can fall into a pool. Getting out is the problem.

But even with all of the things I do wrong, the one thing I do right is to keep my HbA1c in the lower 6th percentile most of the time. So maybe it’s not wrong after all? Maybe it’s just me handling my diabetes management in a way that’s right for me, making it a normal and natural part of my life. The first comment on last week’s blog indicated that the commenter and her husband are handling their diabetes management in ways that are different but right for each of them. Way to go!

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Comments
  1. Jan, an excellent blog. I can see how my management has evolved as the acceptance light has gone on. The day I was diagnosed with diabetes, I went to the store and walked around for an hour reading labels. I finally bought $10 worth of something (can’t remember what) and walked out in tears. I figured I would never be able to eat again! Turns out it was just the beginning of the end of my lifelong love affair with food. As you stated, diabetes has now “become a normal and natural part of my life.” It has been 13 years for me, not without setbacks and complications. But now I feel comfortable in my own skin and no longer have the bouts of depression I had in the beginning of this journey.

    Your complications have been certainly more life changing than mine. I admire you so much for your amazing attitude and your sense of humor. You are special and I thank you.

    Posted by Cathy A. |
  2. I didn’t go to a grocery store. On the day I was diagnosed, I went out to dinner and ordered foods I “would never be able to eat again.”

    You sound as if you’re comfortable — or a lot more comfortable — with having diabetes now. That’s great to hear! Isn’t learning great?

    Jan

    Posted by Jan |
  3. Jan,
    Yours is the only online blog that I read regularly. Mostly because of your sense of humor. Best weapon against diabetes there is!
    I have a suggestion for you as far as an aerobic activity goes: Chair Dancing! A lady named Jodi Stolove has a series of chair dancing videos that are really cute, clever, fun, and give a surprisingly good workout. I have used them myself as I am on a crutch and can’t hop around doing conventional aerobics. She also has a couple of strength-training videos, and even a chair-yoga one. She has a web site (don’t know it offhand), and Collage Video.com also has a couple of the newest ones.
    I hope this helps, and keep on laughing!

    Posted by Christine Richardson |
  4. Thanks, Christine!

    I did a search for Jodi Stolove and her videos are sold all over the place. I’m thinking about starting with the stretching one (I’m way out of shape!) and going from there. Thank you for your very helpful advice. Chair exercises was something I hadn’t thought of, although I do dance in my chair if the music is right.

    Jan

    Posted by Jan |
  5. At wwww.myalgia.com there are 3 exercise videos for fibromyalgia sufferers, all of which include one person doing only seated exercises. They’re great. Now I just have to get back to using them. Jan, you’re one of my favorite bloggers, too - not just because of your sense of humor, but because of your common sense - you tell it like it is, and we sorely need that!

    Posted by Deb |
  6. Jan, I am the one you referenced in an earlier writing.
    I have much respect for you…actually, you are an inspiration with your positive attitude.
    But, you are so wrong about doing it “your way”.
    Sounds good and all…but where has it got you?
    The disease will win if you don’t fight it every minute of everyday.
    I am a fan and wish you the best…but think you are on the wrong track.

    Posted by David |
  7. David, how do you manage your diabetes? (I assume you’re Type 1.) How long have you had diabetes? What are your A1Cs? Do you have any complications?

    I was diagnosed with Type 2 diabetes in January 1986 — nearly 26 years ago. Based on my fasting level of 311 mg/dL at diagnosis, let’s say I’d already had diabetes for, oh, 10 years. So I’ve had it for about 36 years. I probably had gestational diabetes in the 1960’s, but they didn’t check for it yet, or the diagnosis numbers were higher then.

    As for complications, I have one teeny-tiny spot of background retinopathy in each eye. I have some reduced circulation in my lower limb, but pass the filament test every time. My microalbumin is slightly elevated — and has been at the same place for years. My amputation stemmed from a screw put in my heel bone during surgery to reattach my Achilles tendon. I’d had a bone infection in a toe 10 years before when I had a pin put in it during surgery for a hammer toe. I also, quite frankly, had a doctor who didn’t listen to my infectious disease doc when she told him I had a bone infection. Even my endocrinologist says the amp is from a bone infection: Not from diabetes.

    I use an insulin pump and a continuous glucose monitor. The CGM allows me to keep a close eye on my numbers. Except for my last two, when I was dealing with a kidney infection and ginormous kidney stone, my A1Cs run in the low 6th percentile and sometimes dip into the 5th percentile.

    What I do seems to work for me. Where am I going wrong? I’d really like to know.

    Jan

    Posted by Jan |
  8. Jan:
    I think you deserve real credit and complements over your multi year struggle fighting a bugger of a disease and staying alive. I feel your title while accurate in describing what you have had to do to fight this bugger inadvertently undercuts your efforts and struggle done.

    Yes , your process cries out I did it my way but in fact all your writings cry out and reveal the frustration dealing with horse and buggy whip medical thinking, lack of any real decent data, web sites, in early critical years, etc and yet you have successfully navigated your way through all this and got to operating points that work for you.

    Due to the complexity of a multi-organ system of gut/intestine, liver, kidneys, thyroid, pancreas with multi hormone signaling compounded by diet, exercise and energy burn, solving this problem ends up being a personnel issue requiring each individual to work on his situation to optimize her/his care as best as one can. Medicine is struggling to solve this presently using best educated guesses, inadequate test gear and resources and failing that divining rod and the Order of Merlin.

    Type 2 Diabetes ( insulin resistant) is NOT a single organ monolithic disease today that can be solved at a Doctor’s office one lab report/ one office visit at a time and successive 15 minute chats ( ok maybe 30 if lucky). This disease cannot be solved this way unless extremely lucky by problem resolving/tuning a single factor-one at a time – one Doctor’s visit at a time.

    Given the lack of cost effective 23rd century analysis tools and the ability to get detailed picture of failures and systems out of spec and ability to quickly tune meds, diet, exercise and psychology as a combined multifactor tuning job done in parallel, a patient today is faced with learning as much as he can about disease, seek out web of resources and a multi-force team of help and working to drive the problem to solution. In the end, this ends up as a DYI job or let your body rot out and give up.

    That is not a statement of I did it my way but a statement of what it takes to drive this monster back in to the cage; even if all one’s effort suggest – I did it my way. The overall message is much more powerful and extremely eloquent statement of what you have done chasing and reigning in this monster.

    Best wishes, thank you for all the excellent blogs and sharing your efforts.
    Wishing you every success.

    Posted by jim snell |
  9. I am also a fan of Jan’s blog and have been for many years. As a practicing CDE for over 20 years, I appreciate her realistic approach to managing her diabetes.

    My first priority, as a diabetes educator, is to help each person fit diabetes into their individual lifestyle versus fitting their lifestyle into their diabetes. We strive to deliver self-management education in a way that is meaningful and motivating for each unique patient.

    Jan is certainly unique and has been able to find a way that works best for her and still allows her to keep her A1C at goal. And…she does it all with a great sense of humor!

    Jan - doing it ‘your way’ works for you and you are on the right track!! Keep up the great work!!
    -KC

    Posted by Karen |
  10. Hi Jan.
    This is David responding to your questions.
    First, let me apologize if you thought I was referring to your amputation. I was not.
    Yes, I am a type 1 diagnosed 7 years ago at the age of 52…what they then called LADA. I literally went from not having diabetes on a Wednesday to a glucose of over 400 in one day…lost 20 lbs in 2 weeks and couldn’t stop urinating…couldn’t drink enough water. Eventually ended up in the emergency room.
    My father died at age 53…on crutches, and my half sister is on the pump and struggling.
    I was a competitive cyclist since the age of 25…even rode with Gregg LeMond in the old days of the Coors Classic in Colorado.
    I am 5′8″ tall and weigh 135 lbs.
    I have no complications nor the metabolic syndrome. Xlnt blood pressure and cholesterol.
    I manage my diabetes these days by eating a very, very strict diet and walking/running 10 miles per day. I don’t ride the racing bike anymore as it is too dangerous if I start to go low.
    I take 16 units of Lantus in the morning and between 3-7 units of Humalog…depending upon how much I will be exercising.
    I have strong feelings re: this disease and do not believe you can arbitrarilly assign “phases”.
    This will be my last post as will now opt out of DSM.
    I wish you all the best.

    Posted by dfbabb |
  11. My father is 66 years old and living with type 1 diabetes since he was 18 yrs old. Over the past 10 yrs he has been truely struggling with it, having lows of 34 and highs over 400. his readings are like a yoyo. After a low blood sugar he tripped on the stairs and suffered 2 brain bleeds. over the past 8 weeks I have dedicated myself trying to help him regulate his sugars. this is a difficult task as my father has managed it himself for all these yrs and now has to listen to his daughter. I think about insulin in my sleep and have become obsessed with trying to help him because I cant see his quality of life wither away like this. my father thankfully and amazingly has no other complications from his diabetes except neuropathy which is treated with meds. its difficult to watch his moods change as his sugar levels quickly go up and quickly go down. this also causes him to be unsteady on his feet. my dad is 5′9″ and 170lbs. he takes 40 units of lantus in the am. the novalog pen was being used for meals but he was so sensitive to it and it caused reactions. plus my dad has become forgetful. 40 lantus helped during the day but at night his sugars would be low. thus he would overeat out of fear and wake up high. so he took 50 lantus on the day he woke up high. it worked great all day and again at night low. i thought about splitting the lantus but not sure how to do it. Crazy story last week he took 40 lantus in am and atnight was confused and took 40 lantus. we feared all night that he would be low. ironically that night his sugar was perfect. however the next night low. could the lantus work after 24 hrs. any advice? he literally eats the same thing every day. if i could just find an evening snack that would sustain him throughout the night life would be good. thanks for listening to my rant im just feeling like i am failing here.

    Posted by christy |

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