Archive for the ‘Living with Type 1 Diabetes’ category

On Your Own (?)

September 29th, 2011

It’s sometimes the things someone says when they don’t even realize they’ve said something.  I met a woman at my recent talk on Diabetes and Exercise, and she said something in a way that made me instantly know I will never ever forget her.

She probably didn’t even hear what she said, but it struck me and has been on the edge of my consciousness ever since.

She said she has to do her diabetes all by herself.

(Realistically, I understand that I just got a bunch of readers who said in their heads something along the line of “of course!” or in some way agreed with that.  And, depending on how your day is going, you may feel various ways about that, and there are probably about three hundred different ways to say “of course!” But keep reading because this is important.)

But here’s the thing.  I think she’s wrong.  I don’t think she has to do her diabetes all by herself.

For one thing, her boyfriend was attached by her side the entire two hours she was at the event.

For another thing, I think she is pretty damn brave for showing up when she’s feeling like her diabetes life is not where she wants it.  She was in a room full of people who know E.X.A.C.T.L.Y. how that feels.  I’m proud of her for getting herself to that chair.  I’m proud of her for speaking to me when I plopped myself down next to her because I hadn’t seen her say a thing to anyone in the entire room and felt compelled to introduce myself.  (Seriously; what IS that?! I find myself do irritating sometimes.  But, in all, it was important and I’m glad I elbowed my way into her world for that brief time.)

I’m thrilled she knew enough to ask for help.  I’m honored she felt I could be a good resource for her.

I was thinking later about other people I have known whose actions tell me they feel the same as this woman: doing diabetes all alone.

One person hid her diabetes from everyone and didn’t let anyone else have a chance to share the burden.

One person kept his diabetes to himself but went low often enough that his entire office knew what to do for his lows, and they called in a nearby doctor when it was necessary.

That doesn’t sound to me like he was alone with his diabetes.

One person asked for help from some smart people, received it, and has since spent most days speaking, explaining, educating, and venting to friends, acquaintances, and maybe the entire internet about diabetes and how it is to live with the disease.

Oh, wait; that’s me.

Life with diabetes is not meant to be a solo enterprise.  It simply doesn’t work in any significant, long-term way to keep it that way.  But you do have to recognize that you are responsible for sharing your diabetes burden if you want to feel not alone.  You do have a responsibility to yourself to check your blood glucose levels, and deal with them however best you and your doctor have decided, and to keep living your life.

You have a responsibility to speak to the people you share your life with.  You aren’t getting rid of your diabetes any time soon, and like it or not, your diabetes is a huge part of that life.  So share some of your diabetes.

Teach your best friend to count carbs.  Teach your girlfriend how to deal with you when your blood glucose is 50 and getting to the fridge for juice on your own is too much.  Teach your kids what you’re doing and why it matters.  Invite your boyfriend with you to your next visit with your CDE.  Show up at a diabetes event.

Be brave.  YOU CAN DO IT. Diabetes gets a hell of a lot lighter off your back when you share it.  If you aren’t getting the response you want or need, try again.  If the people still aren’t willing to help, ask someone else.  Ask your CDE.  Ask your counselor.  Ask me.  Ask someone you met at that diabetes thing you went to three years ago.  Whomever you share something with will then be helping you do your diabetes.  Not alone.

YOU DESERVE THIS.  

You Either Do, or You Don’t

September 28th, 2011

Some of these studies have just such goofy titles I have to blame the editors.  I mean, you have to think about the researchers who came up with the study idea in the first place: they probably already suspected the answer, but wanted proof so they came up with the study to prove/disprove the theory.

In any case, the study that brought this up for me is called: Does Blood Glucose Monitoring Increase Prior to Clinic Visits in Children With Type 1 Diabetes?

If you have ever BEEN a child with type one diabetes, you probably have already answered the question.  Assuming you are anything like me, the answer is most assuredly Y.E.S. (with a twist)

I sort of think that’s why they make us come in every 3 months, and why my endo in high school made me come in more often than that.  (She is an entirely different story and one not quite appropriate for me to discuss here.)

But this study is I’d say completely accurate when it says, essentially, that those who already checked a lot increased the checks the month before the visit but those who didn’t check in the first place weren’t likely to check any more often just because a visit loomed.

I can just hear the thoughts of those unlikely to check: “I’m not afraid of you, doc.”

I can hear them because I’ve said and thought them.

(The twist comes in when I say that downloadable meters haven’t always been available so I used to have a pending visit and drag out a couple different pens and pencils and make up a “realistic-looking” blood sugar log book before the visit.  So in that way, I did increase my activity related to BG checks… they just weren’t in any way BG checks.)

The goal, of course, is to use the doctor as a tool just like any other we have at our disposal for managing our disease.  If you’re smart, you write down your questions in the weeks before you go in, and check often so that you can discuss periods of your day or specific issues you’re dealing with.  (They are supposed to be great at that kind of detective work.)

If you have a funky chirping or whirring noise when you drive your car, you try and see how you can replicate the noise for the mechanic.  I don’t see checking blood glucose much differently than that.  If it’s an issue with something that only happens when your car is cold, write down when it happens and leave it with the mechanic overnight so they can hear it, too, and then trouble shoot and hopefully fix whatever is weird in your car.

Same here, in my world.  If you’re smart about it.

Having been on the other side of things, I agree with the results as they seem realistic.  If you aren’t responsible enough to check your blood glucose levels on your own for yourself, you aren’t likely to check them for a doctor visit either.

Growing up with diabetes is tough stuff.

Really tough.

Here’s How I Figure It

September 20th, 2011

Being a fitness professional, I know more than the average bear about what aging can do to a body.  Being a type one professional (in training and education for longer than any other professional schooling, I see myself as a type one professional… aren’t you?) I know more than the average bear about what my diabetes can do to my body.

So here’s how I see it.

  1. We need cardiovascular health.
  2. We need muscular strength and endurance.
  3. We need great management of our blood glucose levels.
  4. We need to be happy and healthy as many days as we can, for as long as possible.

I think only #3 on that list makes me different than any non-diabetic.

I think it’s critical for my cardiovascular system that I engage in challenging
regular cardiovascular workouts
.  I want to increase my body’s ability to handle stress and one of the best ways I can do that is to train it to work under some extreme conditions.  Every time I do, my body reacts by building a few more bone cells or making a few more mitochondria.  Thank you, Body; I will need those!

I think it’s essential for my skeleton and my muscles and my wellbeing overall to challenge myself with resistance training a few times a week, every week.  We all begin losing muscle mass by the age of 30—and the only way to fight that is to pick up something heavyHeavier.  And heavier still, as our muscles grow and we get stronger.  You need to lift  something heavier than you thought you could lift last week, or hold it longer, or move it  faster or slower to always work against a challenge.

If you’re bored, you aren’t challenged.

My blood glucose levels are always going to be a challenge for me, and I need to keep my head on straight about those.  I need to work with all sorts of health care professionals who are my allies on this.  Life is too short to be stressed out when I see a doctor or dietician.  I don’t want to carry anxiety about working with someone around with me.  I want to check as often as necessary and not have any part of me afraid to see that little screen.

Life just has so much more crammed into it that is so much more important than spending time afraid or anxious.

And on that note, if I can manage those items #1-3 I think that #4 will kind of take care of itself.  Work hard, work smart, and keep everything in perspective.

Go to it!

Unlocking Medical Mysteries

September 16th, 2011

I don’t think seeing a doctor should involve emotional discomfort.  I know it absolutely does, but that doesn’t mean I don’t want to fight that.

Yes, I think that’s at least a quadruple negative right there.

Yesterday I saw my family practice doctor and we were talking about a few things and I realized how uncomfortable I was.

Uncomfortable, as I sat fully clothed on a crackly piece of paper on a table I had to climb up onto and she sat two feet below me and typed on her computer.

So I interrupted myself and asked if she minded that I sit in the chair instead.

Her response was the best: Yes of course; this is a conversation.

See; she gets it.  She understands that when it comes to my health, I am the expert and she is a consultant.  Not to undermine her education or experience or knowledge in any way at all… but not to undermine my education, experience or knowledge either.  We were having a conversation.

It was a good thing, and I’m glad I was able to say and do what I said and did. 

I’m on a writing roll here today aren’t I.

(Green underline there since I didn’t put a question mark!)

Anyway, while she was out of the room I made my obligatory tour of the surfaces of the room.  (What can I say.)  I found a sheet of paper that had some information that I don’t know if you will recognize.

On the off chance you don’t, I’m listing them here.  The medical world isn’t meant to be so confusing; it is just big (huge) and they use codes and you can end up feeling lost before you even are allowed through the door.

I think we all deserve better than that.

So here are diagnosis codes your doctor uses when they see you.  They need to use at least one diagnosis code (called an ICD-9 code) for any medical procedure code (called a CPT code) they use to (hopefully) get paid by your insurance company. There are big books of codes that change every year, so doctors usually have one sheet of paper that includes their most typical codes to make things faster as they zoom from room to room and patient to patient.

For diabetes:

250.0… type 2 diabetes, non-insulin dependent, not stated as uncontrolled

250.1… type 1 diabetes, insulin-dependent, not stated as uncontrolled

250.2… type 2 diabetes, non-insulin dependent, uncontrolled

250.3… type 1 diabetes, insulin-dependent, uncontrolled

And then there are more!  Each specific complication has its own code, or way of coding.

250.5x(0-3 above) and 362.01 is diabetes with retinopathy

250.6x and 337.1 is diabetes and neuropathy

250.7x and 440.20 is diabetes and peripheral vascular disease

250.4x and 583.81 is diabetes and nephropathy

250.8x and 405.99 is diabetes and hypertension

250.8x and 272.4 is hyperlipidemia

Some codes have 5 digits and some have 4.  Usually the 4 digit codes are for the general diagnosis with the fifth digit getting more and more specific.

It’s pretty interesting from a coding point of view (which may be about the most boring thing ever if you don’t care about it) but I think anyone with a chronic disease like diabetes really should know the basics of this stuff.

It’s a way to take charge.  As my Dr. Joe would say, it’s your time!!

Real People, Real Life, and CDES

September 15th, 2011

My talk to the CDEs (Certified Diabetes Educators) yesterday about Diabetes & Exercise was kind of interesting.  I mean, I spent a long time talking about myself so of course it was the most riveting talk anyone has ever attended.  (HA!)

What I found interesting was how many people there were (1) used to discussing type 2 diabetes and very excited to switch over to a discussion of type 1 and (2) had no idea how exercise works in real life when it comes to diabetes.

Real life.

Yep.  Hard to escape it!

One lady started asking me my background as I was setting up; she assumed I was another CDE and seemed surprised I am not.  I assured her I was plenty qualified to discuss diabetes—24 years of constant experience will do that!

As we got into it, I got some great questions from the group.  Some wanted to know if I eat before I work out. (not really)  Some couldn’t figure out how I can check as I run. (very carefully, or I’ll walk)  Some wondered if I take my meter with me on every run.  (nope)

Real life.

I ended up checking during the talk, as I was standing at the front of the room.  I didn’t notice I don’t think that I was checking so much, but omg one of them apparently timed me from start to finish (I did take a correction bolus).  She was
excited that it took me 40 seconds to do it all.  (I was a little weirded out that someone timed me.)

I am now that person that she’s going to tell a future patient about.  She’ll be sitting with someone complaining about how much time diabetes takes and she’s going to say “no; it takes 40 seconds.”  (Sorry about that one, if you’re the patient on that one!  That seems so annoying when others do it to me and I truly apologize.)

They all seemed flabbergasted that I could check and continue with my activities simultaneously.

Um, I do it all the time.

Real life.

When they were warmed up, they started firing questions at me about more specific types of exercise.  It was fun to fire questions right back at them about other factors I involve in my decisions before/during/after I work out: heat, workout intensity, food today, food yesterday, elevation changes, insulin on board, temporary basals, etc.  Then I’d tell them what I would do and I’d tell them about what I would expect.

Real life.

I told them about one of my clients whose blood glucose wasn’t what I expected at the end of a workout.  (I expected 110  and she was 155.)  I asked her if she had set the temp basal for 30 minutes like we had discussed.  She said she had set it instead for an hour.

Timing affects a lot.

These are the kinds of things it takes a lot of experience to manage.  It takes that constant vigilance.  It takes a lot of trial and error and a load of strips.

But the funny thing is, it is all so worth it for what you get in return.

Real life.  LIVING with diabetes.  Life.

Awesome.

INSULIN!

September 12th, 2011

A lot of people, at least with type one diabetes, say they don’t have a functioning pancreas.  That isn’t entirely true.  Our pancreas serves to produce several necessary things: insulin, of course, and digestive enzymes and various other hormones.  So for those of us with type one, it’s our beta cells that live in the land of those “Islets of Langorhans” that we’re missing.

It sounds almost like a place found at Disneyland, that Land of Langorhans.

Almost.

At the cellular level, insulin grabs glucose and helps transport it into the cells.  If you’re like me, you learned this about thirteen thousand times in the four days you were in the hospital at your diagnosis: insulin is the key that unlocks the doors to your cells so that your body can use the food it eats.

Yup.  The key.   INSULIN IS THE KEY!

But then there is that other, much less discussed, function that insulin serves in our bodies.  Insulin doesn’t just help your body use glucose. 

Nope.

It essentially helps your body store fat, too.  THAT one I only learned a couple of years ago.

THAT one I would have liked to have known a long time ago.

Insulin doesn’t do anything with the fats themselves, but it can serve to prevent the BREAKDOWN of your already-stored fat.

WHAT A BUMMER.

So it’s important to keep yourself on as little insulin (be it self-made or self-injected insulin) as possible.  One way to do that?  Why, remain as insulin-sensitive as possible!

How can you do that?  Two primary ways: (1) don’t need as much insulin to cover the food you eat (keep away from those big boluses to cover high-glucose spikes) and (2) EXERCISE to keep your cells happy and burning glucose as quickly as possible.

Exercise is awesome for more reasons that I can list in my “less than 500 words/blog” goal.  BUT, one of the reasons is that exercise helps to activate glucose transport… to me, in my life, that means that my insulin becomes SUPERCHARGED when I do cardiovascular exercise, or a weight training circuit that keeps my heart rate elevated.  (Love that supercharge!)  I simply don’t need as much insulin in my body.

If you exercise long enough to decrease the amount of glycogen stored in your liver, you ALSO get to replace that for the next day or so… my husband reminded me last week that I tend to go low the night after a half marathon.  (I’ll have to remember that next time.  I mean, I’ll have to remember that this Sunday because I have another half then!)  If I planned
better for it, it’d be like FREE EATING a little.

Hey, you’ve got to get it while you can.

(It’s also good to know that everything changes AFTER you’re done with a bout of exercise.  If you’ve had a lowered basal
rate, you may need to take a little bolus to cover a blood glucose climb.  Additionally, you need more insulin immediately after a strength workout to shift amino acids from protein into muscle cells where they can be used for muscle growth and repair.  It’s complicated, as you know.)

INSULIN ROCKS even if it’s complicated and challenging and makes those of us who have to manage our levels externally sometimes want to pull our hair out.

No matter what, I still like it.  Life really sucked when I didn’t have any insulin.  This way is MUCH BETTER.

Don’t you agree?

Taking a VACATION?!

September 1st, 2011

While I cannot take a vacation from my diabetes or its continuous monologue… I CAN take myself on a vacation WITH my diabetes.  So I’m going!

I’ll be running the Kauai Half Marathon on Sunday and then lazing around on the island for the remainder of the week.  We might do a bike tour, might take a sunset cruise, and may just do nothing at all.  (How great is that?!)

Aloha!!!

Who Is On Your Dream Team?

August 25th, 2011

It’s common knowledge I think by now that the DCCT (Diabetes Control and Complications Trial) determined in the early 1990s that the tighter control we have over our blood glucose levels the fewer microvascular complications we face.  Woot for that one.

The best control was achieved by those with “Intensive Diabetes Management.”  More specifically, it “requires careful follow-up to monitor progress toward individualized goals and support to reinforce management skills and personal efforts.”

Okay.  So it would seem that one physician requesting I come back in three months and get another A1c done would be far less than the Intensive Diabetes Management I could use to keep me at my healthiest.

Nope.  I need a TEAM!

The successful teams in the DCCT included “physicians, nurses, dietitians, and behavioral scientists with special interest and training in the management of diabetes.”

Why all these people? They say”this core membership reflects the basic requirements of diabetes treatment: nutrition, medication, self-monitoring, and self-management.”

It apparently really does take a village.

Didn’t you kind of suspect that already?

So I’m starting to work on my fantasy Diabetes Dream Team.  Mainly fantasy rather than reality because I don’t think I can afford a real Dream Team, and I haven’t met enough superstar professionals with attitudes I love when it comes to my diabetes.  (Not to mention I’d rather spend my time exercising or reading or shoot nearly anything than sitting in doctors’ offices meeting all potential Team members.)

So I need a Doctor for my Diabetes Dream Team.  I have a couple in the running.  One of them is a type one herself who I’ve known for years.  She’d be great, but I think a little intimidating to me.  That’s not a problem, but it must be considered when it comes to choosing my Dream Team members. 

Another one is all over the bedside manner and inspirational side of things, but I’m not super clear how well he knows the deets of my diabetes.  So maybe I’m shooting for a hybrid of knowledge and personality. 

Next up I need a nurse.  I’m totally putting on some of my friends I met at Bearskin Meadow Camp way back when, before they had even finished their undergraduate degrees.  They’ve lived with diabetes themselves or with siblings or spouses.  They know where it’s at.

Ooh; dieticians come next!  That one may be difficult.  I kind of need a personal chef more than I need a dietician.  Hey; what about that guy from Top Chef who has type one?  Maybe he’d go become a dietician for me and then sign onto the team as Dietician and Head Chef.  Maybe he’d do my grocery shopping.  THAT would be cool.  I’d need a lot of vegetables and not many potato chips and some good lean protein options every day every time I was
hungry or needed to eat.
  I think this one is probably the hardest spot to fill on my Dream Team.  I’ve got to keep thinking.  (And maybe keep saving my money so I can hire a personal chef.)

As for the mental health professionals, that’s probably the easiest spot for me to fill.  I sort of think I’ve personally trained my therapist in living with diabetes I’ve seen her so long and talked about my diabetes so much.  So she’s sort of a shoe-in.

HEY; that means I’ve already got one of my Dream Team spots filled in real life!!  AWESOME!!!

Of course, if I’ve got my Team working on my diabetes, it may leave me some extra time in my day.  I can think of so many things I could do if I weren’t the only one in charge of figuring out my diabetes!

Wait; if I’m living in a dream world I might as well hire Martha Stewart to clean my house.  Then I’d have even more time!

I could get used to this!

Who would you put on your Diabetes Dream Team roster?

I May Have to Put My Foot Down for This One

August 23rd, 2011

I may have to stand up and request a different name for my disease (currently called type one diabetes) if they end up doing this.

I don’t think we’ll stand a chance to ever clarify in the public’s mind what our lives are really like as we live with type one diabetes if they expand the label of “prediabetes” to include who knows how many people.

Seriously; these researchers looked at patients for several months and determined that of the 14,000 patients who had blood drawn, those with blood glucose levels of 51-82mg/dL had a less than one percent chance of developing type two diabetes.  Those who had blood glucose levels between 91 and 99 mg/dL had a more than three percent chance of developing type two diabetes.  So now the researchers are proposing to lower the threshold of “prediabetes” to 91 from its current 100-126mg/dL.

(If you check your blood glucose you know that you can check at home five seconds apart and get a 90 and a 120 result due to the machine’s margin of error.  I imagine the labs have a margin of error as well.)

It makes me wonder if they are splitting hairs in order to fan the fire of the money-churning machine that is type two diabetes.  The sooner they can call you “prediabetic” the sooner they can get at you and sell you socks, meal replacement shakes, diet meal plans, it’s a wonder they don’t have diabetes cruises by now.  (Okay; the cruise could be fun.)

Here’s my beef: I have type one diabetes, yet the majority of information out there refers only to “diabetes” without clarification.  The origin of
type one diabetes and of type two diabetes are vastly different and by grouping the two under a single umbrella the public stands zero chance of comprehending what’s going on.

We share the name “diabetes” because the two diseases share a major symptom (high blood glucose levels) and similar complications as a result of the elevated glucose levels.  But is that enough to call them both “diabetes”?

To me, sharing a symptom should not be enough to name the disease identically.  (If one disease caused someone to vomit, and a different disease also caused someone to vomit, I don’t think the medical field would say the two diseases should be called by the same name.  So what’s so special about blood glucose?)

For me, I didn’t have any period of prediabetes.  So it’s not a term that makes any sense to me.  It seems like a term doctors are happy to throw around in an effort to scare their patients into changing their habits.

I didn’t get a “pre” period of time to do anything at all about my disease.  I had no chance to prevent my disease.  I got so sick I lost my hair.  I was skin and bones because my body cannibalized itself to find some useable energy.  My body’s pH was dangerously acidic.  I was dying without insulin at the age of ten.

Let me make this clear: I believe both diseases are important and real and difficult to manage and require constant vigilance.  I think people need to do what they can as soon as possible to take care of themselves.

If it takes referring to a blood glucose lab reading of 91 to 99 “prediabetes” well, then, go for it.  More power to you, advertisers.

While those ads are showing and confusing the public, I’ll be over in the corner with my friends, the others with diabetes caused by genetic or autoimmune diseases, maintaining our own sort of constant vigilance.

Dorm & College Life

August 22nd, 2011

For a lot of people, this week starts a new schedule.  Some will have to wake up earlier to get kids off to school on time.  Some will stay up later to complete homework assignments.

Some are starting college.

For those beginning the college trek who also live with diabetes, that is a HUGE transition.  Almost too large to  comprehend all at once, particularly at the age of eighteen.

I’m just saying, while many leaving now for college are concerned with making friends and gaining The Freshman Fifteen and finding classes and managing for themselves without parents in-home not to mention doing laundry for the first time, those with diabetes are also wondering how on earth to manage their disease on top of all of it.

I’m sure a bit of them is somewhat relieved that their parents can’t see what they’re eating, can’t see the meter screen, and thus can’t lecture as often.

It’s a LOT easier to hide from your diabetes when you are on your own at last.

It’s a wreck of a situation: you’re feeding yourself in the cafeteria (where is the package with the carbohydrate count and ingredients listed?), you’re staying out at different times doing fun stuff (shoot what time is it; do I need to take a shot?), you’re maybe drinking with abandon (who the hell cares I think I’m having fun!)  and where on earth did you leave your meter.  Maybe your roommate moved it or covered it with their own stuff.  Shoot.

Oh, well. 

To say that a move to college is a crazy time is an understatement.

I know for myself I had to learn a new way to care for myself and my body; figuring out when I felt sick enough to go to student health, learning when I had the flu that the cafeteria would bring food to my room (score on that one), figuring out where the pharmacy was and what friend would drive me there when I needed insulin or syringes.

It was a struggle, and I wouldn’t let myself see it at the time.  I was too concerned about everything else that was going on with college life to factor in what was going on with my disease!

Looking back at it, it would have been better for me if I had someone who checked in with me maybe a couple times a week, just to see in a nonjudgmental way if there was anything going on with my diabetes they could help with.  It would have been better for me if I could have had insulin mailed to me (score again for almost everyone with pharmacy coverage now).  It would have been better if I kept my diabetes stuff all in one spot and had been able to sit with a friend or roommate for a half an hour and tell them what I needed them to know.

I would have felt better, I know.

I’ve never wanted anyone to feel sorry for me, but I think having a few more people wholly on my team in a way I felt both emotionally and physically is something everyone deserves.  College is tough, and so is diabetes.

We’re all working at this, one day at a time.  There IS a way to get through college with confidence, health, a smile and oh yeah some classroom learning, too.

If you want to talk about more specific strategies for you or your son or daughter away at college, I’m here!