type 1

my anniversary

One year ago today, I received my diagnosis.  This weekend, as I was looking at colleges with Emma, sweating in the heat and humidity of Virginia in August, I kept thinking back to this same weekend last August, when I was lying in a hospital bed, wondering what had hit me and whether I would survive.  I did survive (so far!) and I've learned a lot in this past year.  I'm now pretty good at controlling my blood sugar through insulin, diet, and exercise.  I've accepted the fact that I've got a disease that will never go away.  I'm totally comfortable injecting my insulin wherever I am -- in a restaurant, on an airplane, while walking through the park at a craft fair.  But I'm not perfect.  I still experience major freak-outs when my blood sugar is above target, especially when I don't understand why.  Today, ironically, my readings have been significantly higher than normal, despite the fact that I've hardly eaten anything.  Bad Levemir?  Lack of exercise?  Who knows?  Whenever I have one of these days, and I do every few weeks or so, I become convinced that my blood sugar has gone haywire, that I'll never be able to control it, and I obsess and worry about it until I'm in a tizzy.  My goal for year 2 is to calm down, to do the best I can, and to recognize that there will always be highs and lows and that, like stormy seas, the only thing to do is hang on and ride them out.

magical thinking

I realize that I've fallen into a strange way of thinking regarding my diabetes.  It's what I call magical thinking, the idea that if I focus on my diabetes all the time, I can keep it under control.  I believe this started when I began seeing Dr. Bernstein.  As I've mentioned, he is all business when it comes to diabetes, and he demands a high degree of discipline and dedication from his patients.  In order to "fine tune" my insulin doses, he asks me to check my blood sugar eight times a day:  when I wake up, before breakfast, 2 hours after breakfast, before lunch, 2 hours after lunch, before dinner, 2 hours after dinner, and before I go to bed.  I don't mind all the finger sticking, but I do mind the fact that there's never a moment when diabetes is not occupying space in my head.  What's worse is that I've become addicted to all that checking.  I'm incapable of not checking!

For the past few days, I've been in Chicago with my son, looking at potential colleges.  Lots of driving around, sightseeing, and eating at weird times.  A normal person might have said "OK, I'll give myself a break and test my blood sugar only a few times a day until I get home."  But not me.  I continued to test 8 times a day, because . . . if I didn't test, who knows what it might be.  Now rationally, I know this is ridiculous.  If my BG is normal at noon, it's not going to zoom up to 300 by 2pm.  The problem is, I'm not being rational.  I think that if I test all the time, my blood sugar will somehow know I'm watching it, and it will hesitate to do anything extreme.  Ridiculous?  Yeah, I think so.

So my goal is to start spacing the visits to Dr. B further apart, and to limit the 8 times a day routine to the week or so before I see him.  Because there's more to life than being a professional diabetic -- at least I hope there is!

memorial day friday

I'll start with a disclaimer to anyone who might be reading:  this is NOT A POST ABOUT DIABETES.  Not that it won't come up, because everything in my life is about diabetes these days.  What this is really about is melancholy, that nostalgic-sad feeling that comes over you from time to time, especially on holidays, perhaps because you can think back to those same holidays in years past.  Memorial Day is a bad one for me, because it marks the beginning of the summer, and it was at just this time 14 years ago that my marriage unravelled.  At the time I thought I would not survive.  I was 43 years old, I had been with the same person since I was 18, I had just quit my job, and I had 3 year old twins.  I did survive, of course, and can honestly say that I like my current life better than I liked that one, but still . . . there are things I miss.  I miss having a husband, even though I wouldn't want one now.  I miss that entitled, excited feeling of packing up for the first weekend at the beach house, and the prospect of all those beachy summer weekends ahead of us.  I miss being able to say "us". I miss my kids when they were babies.  I miss them now, even though they're only gone for the weekend.  I think about how they'll be in college in just over a year, and I miss them in advance.  I feel old, and left behind, and now, old, left behind, and chronically sick.  I'm feeling totally sorry for myself, in case you can't tell.  I know there are things I could do to lift myself out of this mood -- weave something, spin something, put on my pajamas and watch TV -- but for the moment I'm just going to wallow in this melancholic pit, get it out of my system, and start fresh tomorrow.

TMI

When I signed up for the "Dr. Bernstein treatment", I was aware, from having read the patient testimonials in his book, that I would be subjected to a far more thorough physical exam than I had ever experienced.  I also learned that people whose doctors told them they were complication-free discovered from Dr. Bernstein that they did, indeed, have diabetes-related damage.

I don't know why I thought my experience would be different.  I guess on some level I expected him to say "wow, you're the first diabetic I've met who has NO COMPLICATIONS AT ALL!"  Needless to say, this didn't happen.  I do have some complications, and it seems as though another one pops up every day.  Today I had a sonogram to see if my high liver enzyme levels are a result of gallstones.  The good news:  no gallstones to be seen.  The bad news:  the high liver enzymes are as yet unexplained.  The unexpected news:  during my conference with the radiologist, right after she told me my liver looked fine, she offered the information that the had seen "some plaque" in my aorta.  My aorta!  I think that's pretty important.  "Are you diabetic?" she asked.  And when I responded in the affirmative, she said "well, that would explain it."  When I asked if the plaque was reversible (could I, through strict adherence to my chosen program, somehow sweep all that plaque away), she replied that the objectvie was to keep it from getting worse.  In other words, no.  I left the office totally despondent, feeling old and sick and used up, and wondering what the next piece of bad news will be.  I can't help but think that, if Dr. B were not so thorough, if he had not followed up on this liver enzyme thing, I would still be living in blissful ignorance of my aortic inadequacies.  I guess it's better to know than not know, but I'm having a hard time convincing myself of that fact tonight.

the daunting dr. bernstein

I've just finished day 2 of my 3-day Dr. Bernstein marathon.  A visit to Dr. Bernstein consists of three long days, during which he tells you things you never imagined about diabetes, interspersed with sessions in the exam room where he finds complications you didn't think you had.  He is, as everyone has said, an amazing person, very intense, and totally focused on the management of diabetes, his own and that of his patients.  It's both inspiring and scary to spend a day with him.  On the one hand, you get a real sense that this disease is manageable, if you follow his intensive regimen.  On the other hand, you wonder if it is possible for any human being to stick to the program he outlines.  It requires a capacity for objectivity that most people lack -- as in, "I know this is bad for my diabetes, so I will never eat it again.  Ever."  I had already cut out a lot before I went to see him (sweets, bread, pasta, fruit, milk . . .) and my A1C was good enough even for his high standards (4.4!), but there's certainly room for improvement -- even at 4.4, I still have distressing highs and lows.  I'm pretty confident that, if I follow his plan, those will even out.  The question is, can I stick to it?  When I got home from my first session last week, and my second session yesterday, I was profoundly depressed all evening, thinking about the things I can never do again.  Have a Starbuck's grande skim latte.  Sit at a bar and drink a cosmopolitan (not that I ever did that very much, but still . . .)  Go to Paris and hit all the artisan bakeries.  It takes a lot of effort to live such a regimented life, and it takes even more effort to tune out the people who tell you it isn't necessary or even desirable, that you should be able to eat fruit and bread and whatever and just cover it with insulin.  But I don't think that's the right approach, at least for me, so I'm committed to trying the Bernstein plan.  Now if I can only stop whining about it.

breakfast then and now

One of my favorite breakfasts BD (before diabetes) was a large skim milk latte, followed by a bowl of something called Peace cereal -- a sweet, delicious concoction of flakes, nuts, and granola clusters.  Peace cereal can only be found at the health food store, which reinforced my idea that it was somehow good for me.  The only problem with this breakfast was that I couldn't stop eating it.  After one heaping bowl of cereal, I wanted another.  And another latte to go along with it.  Each time I walked through the kitchen, I'd stick my hand into the box of Peace cereal for a little hit of those yummy nuts and clusters.  It was that addictive.

Once I became diabetic and started restricting carbs, I realized that this breakfast was, in a real sense, addictive.  Eating carbohydrates just makes you want to eat more carbohydrates, and when you stop, you see how addicted you are.  When I cut out the cereal and then the skim milk, I went through withdrawl -- what am I gonna eat?? -- but after a few weeks it passed and I no longer felt the call of the cereal box.

These days, breakfast is a WASA cracker, topped with avocado, turkey, cheese and lettuce, and a coffee with half and half.  Maybe I've brainwashed myself, but I enjoy this breakfast much more than I ever did the cereal.  It fills me up, helps keep my blood sugar stable, and best of all, doesn't leave me craving a second breakfast the minute I've finished.  Another silver lining in my diabetes cloud.

the endocrinologist from hell

As I've mentioned before, my diabetes was diagnosed last summer, during a 3-week vacation in Seattle. I spent the first two days of that vacation in Swedish Hospital recovering from a blood sugar of 740.  On the day I was released, the attending doctor gave me a fistful of prescriptions and the admonition "As soon as you get home, find a good endocrinologist."  Not being one to question the medical establishment, I located and made an appointment with a highly regarded endocrinologist in New York.  Her office was on Park Avenue, and the wait for an appointment was 3 months.  During that time, I did the best I could, and read everything I could get my hands on about type 1 diabetes.  One of the books I read was by Dr. Richard Bernstein, who advocates a carboydrate-restricted diet as a management tool for diabetes.  He is a type 1 diabetic himself, and his story of taking control of his own disease is truly inspiring.  His approach made sense to me, and I decided to give it a try, first eliminating bread and pasta, then starchy vegetables, then fruit, and finally milk.  Each time I eliminated a high-carb food, my blood sugar became a bit easier to control.  I was eating more protein and more (good) fat, and feeling full of energy.  I lost weight and was never hungry. 

I arrived at the Park Avenue endocrinologist's office full of enthusiasm and excited by the level of control I felt I'd achieved.  She was less enthusiastic.  "You're not eating bread?  You're not eating fruit?"  Horrors!  "You're a type 1 -- eat anything you want and just cover it with insulin."  What about my good blood sugar numbers on the low-carb diet?  "You're still in the "honeymoon" phase.  Don't worry -- your blood sugar will be much more erratic and hard to control when the honeymoon is over."  Is there anything I can do to prolong the honeymoon?  "No."  Was a a little depressed when I left her office?  What do you think?

My second visit went approximately the same way, and it was then that I decided that, insurance or no, I had to spring for a visit to Dr. Bernstein.  The fact that he is located only 25 miles from where I live seemed like a sign.  My appointment with him is in three days.  I feel like I'm about to meet Mick Jagger.  The Mick Jagger of diabetes.

it's the little things that get you

Like, for example, the little tortilla strips that they put on the Santa Fe chicken salad at Applebee's.  Yes, it's another "I ate this and my blood sugar went up" post, but hey, this is my online diary, and if it helps me to write about what I ate ad nauseum, then so be it.  So last night, the kids and I decided to go to our favorite place for dinner (you can tell that we are the quintessential suburban family -- Applebee's really is our favorite place to eat.  Not surprisingly, Jeff refuses to go there when he comes up for his weekly dinners.  So it's really our place.)  My favorite thing at my favorite place is the Santa Fe chicken salad, which, I believe, is relatively low-carb (chicken, salsa, lettuce, cheese, guacamole), except for the little strips of tortillas that I always forget to ask them to leave off.  Usually, I try to avoid them or eat just a few, but last night I just ate them.  There didn't seem to be that many, and my blood sugar had been pretty low before dinner, and I was caught up in the whole "out with the kids" thing, which I treasure more than ever, because I know these days will soon be gone.  This was around 8:00, so when I checked my blood sugar at 11:30, I wasn't expecting anything unusual.  178!  Yikes!  How can this be?  I made the mistake of re-testing, and got 184.  So instead of a nice snack to accompany my evening Lantus, I had a unit of Novolog.  I'm never really sure about the correction thing, probably (knock wood) because I don't have to do it too often, so I guess I miscalculated somehow, because at 2 am my eyes popped open and I knew something was amiss.  Quick test:  41.  Glucose tablets, a little cottage cheese, and back to sleep.  This morning I'm at 109.  This reminds me of the times I've tried archery -- the first arrow goes way too high.  I try to correct and the next one goes way too low, and so on.  Frustrating, but I guess this is just part of the learning process.  The lesson:  get a different salad next time.  Or better yet, a bun-less hamburger.  Those are usually pretty benign.

By the way, at the A&P trip that followed dinner, the kids tod me that their friends would never consider dinner and a supermarket outing with their parents a fun thing to do.  Most of them, they said, don't do anything with their parents.  So I feel pretty lucky and special, and even my crazy blood sugar can't spoil that.

what the . . . ?

This is such a frustrating disease.  Just when I think I might be getting the hang of it, something like this happens:  woke up this morning at 6:30 to feed the cat and make the school lunches. and decided to do a quick test, as my before-bed sugar was higher than I wanted last night.  So, 7am test - blood sugar was 89.  Great.  All is well.  My panic level cooled down to a slow simmer (it never gets any lower than that) and, after everyone left for school, I decided to go back to bed.  Woke up at 8:30, looked through some stacks of bills, and wondered if I should test again beore breakfast.  Overkill?  Well maybe, but just to make sure.  Blood sugar at 9am:  113.  What's going on here?  I haven't eaten anything, or done anything other than lying quietly in bed worrying about the state of the world.  Is this much fluctuation normal?  Will I ever get this under control?  Will I ever calm down?

Days like this, I'm glad that I decided to see Dr. Bernstein, even though he is pretty extreme and doesn't accept any insurance plans.  I've been waffling about the thousands of dollars out of pocket, but if he can give me any insight into things like the above, it will be worth it.

things I never ate before diabetes

After my diagnosis last August, while waiting the 3 months it took to get an appointment with the highly-rated Park Avenue endocrinologist, I decided to begin educating myself about diabetes self-management.  From the beginning, the things I heard from the hospital's diabetes educators and read in pamphlets from the ADA didn't make sense.  Eat plenty of carbs, but learn to cover them with insulin.  What?  If carbs are the problem, why not eat fewer of them?  At this point, I was fortunate to come across Dr. Bernstein's book.  His theory, in a nutshell, is that the way to achieve normal (non-diabetic) blood sugars is to cut down drastically on carbohydrates.  Terrified by all I had read about diabetic complications, I decided to give it a try.  Close to 6 months into it, I can report that it is not for the faint of heart.  You really do give up most everything you love.  But the payoff?  In my case, relatively stable and predictable blood sugars.  And the more closely you follow the diet guidelines, the better the results.  (disclaimer:  I haven't had an A1c test since October, at which point it was 6.1.  It will be interesting to see what my March number is.)

So anyway, returning to the purported subject of this entry, there is a silver lining of sorts.  After you cut out bread, pasta, cereal, fruit, etc., and go through the "what's left to eat?" phase, you begin to get creative.  Here are a few things I almost never ate pre-D that I've added to my diet. 

Avocados - I always thought they were "too fattening".  The good news is that, when you cut out carbs, you can eat pretty much anything else you want without gaining weight.

Nuts - Yes, I know they have some carbs, but they're also full of healthy fat.

Cheese - My current favorite is dill havarti.  Great with a slice of avocado on a . . .

WASA fiber rye crispbread - the only breadlike substance permitted by Dr. B.  At first I thought they were dry and tasteless, but now I'd rather have them than bread.

Eggs - scrambled eggs with sauteed kale or other veggies, topped with cheese, makes the best breakfast in the world.

Better than Bouillion concentrate - Before diabetes, my favorite afternoon snack was a grande skim latte from Starbucks, a nice shot of caffeine along with about 20 grams of fast acting carbs.  I've replaced that with a cup of chicken, beef or beef mixed with chili base broth, and discovered that just having a hot drink is about 75 % of what I'm looking for.  I do miss those lattes, though.

Cream - Yikes.  You might as well sell your soul to the devil as admit that you ingest heavy cream.  But a little goes a long way in a cup of coffee.

Sliced deli turkey - I did eat this before diabetes, but now I eat A LOT of it.

Leafy greens - Great sauteed and mixed into eggs.  My current favorite, as mentioned above, is kale.

Olive oil - I was one of those people who tried to saute things in a half teaspoon of diet margarine.  Using actual oil tastes better and makes the frying pan easier to clean.

Canned tuna, salmon, sardines, etc. - A great lunch accompanied by a big salad.

Blue cheese dressing - another of those "it's too fattening" items.  These days I have a spoonful on the salad mentioned above.

Celery - something I always actively disliked.  Great sauteed in eggs or dipped in blue cheese dressing.

Ricotta cheese - I'm not sure of Dr. Bernstein's position on ricotta, but I find that a small bowl of it topped with chopped nuts has a negligible effect on my blood sugar.

Much to my surprise, I'd actually rather eat these things than a big bowl of sugary cereal or a dish of pasta.  Most days, anyway.