WARNING: If the sight of a 54-year old belly makes you queasy, do not read this post!

You have been forewarned!

As I was looking at the paraphernalia that is regularly attached to my abdomen, I thought many of you may not know what it it’s like to use an insulin pump and/or a continuous glucose monitor (CGM).

Well, it’s not pretty, especially on a 54-year old’s belly. So, in the spirit of sharing, here’s what it looks like on me (the only PhotoShopping I did was to add the text and arrows):

InsulinPump&CGM

All wired up!

 

[Side note: Quite often, I have bruises from all the various insertions, but lucky for you, when I took this photo, my tummy was pretty clear].

Realistically, it’s not a lot of equipment – just 3 pieces:

  • The insulin pump
  • The infusion set
  • The CGM transmitter and sensor

First, let’s talk about the pump. This is truly my lifeline.  Most T1Ds inject insulin into their bodies several times a day with a syringe. I used to do that, but I have been lucky enough to wear an insulin pump for the last 10 years or so.  (As a reminder, an insulin pump is an external, battery-powered device that delivers insulin into my body at a programmed rate.  The infusion set is a reservoir and tubing, which, when connected to the pump, delivers insulin from my pump to my body).

I always have the insulin pump on and the infusion set inserted into my body.  I’ve kept it on during surgeries, I sleep with it, I keep it on when I’m flying, I wear it when I’m exercising…The only time I don’t wear it is when I am showering or swimming (and then it is only off for minutes at a time).

The pump is “programmed” for my specific needs.  (And I purposefully put that in quotes because it is not an exact science by any stretch of the imagination).  Essentially, my insulin pump works this way: I get a tiny but steady stream of insulin all the time (the basal rate) and when I eat, I give myself additional insulin (a bolus) to compensate for what I ate (so that my blood glucose doesn’t get too high). Now, I used to have to do those calculations in my head when I was giving myself shots, but the pump has a featured called the Bolus Wizard which helps me with that.

Sounds simple enough, but you also have to take into consideration things like exercise, glycemic rates, the fat content in your food, stress, whether the stars are aligned (you think I jest) and so much more. And sometimes (many times, actually), what worked yesterday doesn’t work today.  But that’s the life of a diabetic.

Theoretically, this combination of basal rate and bolusing mimics how your pancreas works (if you’re lucky enough to have a working pancreas). For people like me, this little machine and my brain are doing the work for my pancreas. Like I said earlier, it is truly the lifeline that I cling to.

I change the infusion set every 3-4 days.  I usually rotate from one side of my abdomen to the other each time I change it.  It takes me about 3-4 minutes to remove the old equipment, rewind the pump, fill the reservoir, insert the infusion set and prime the pump.  Once that is done, we’re off and running again.

Occasionally, when I remove an infusion set, I’ll have a bleed out.  Those can be quite embarrassing (I had it happen in a restaurant once), but you just handle it.

Lest you think this is a lot of trouble (and it can be), I wouldn’t go back to giving myself six shots a day for anything.

Now on to the Continuos Glucose Monitor, or CGM, which measures my glucose levels in real-time, twenty four hours a day. A tiny electrode (the glucose sensor) is inserted under my skin to measure glucose levels in tissue fluid. It is connected to a transmitter that sends the information wirelessly to my pump.  The pump can then detect and notify me if my glucose is going too low or two high (thresholds that I have set in my insulin pump).

And notify me it does! Which is a good thing, but sometimes (especially when it is going off in the middle of the night), it can be overwhelming. (Just today I was yelling at my pump because the low glucose alarm kept going off, and I was eating, and it was taking longer than I would have liked for my glucose levels to rise).  And yes, I can adjust my thresholds and other things to make those alarms occur less often (but that kind of defeats the purpose, imho).

I change my CGM every 6 days (which is the life of the sensor).  It takes me about 5 minutes to do this, mostly because it’s a little trickier than the pump and infusion set, and I haven’t been doing this as long. I still mess it up from time to time, and when I end up wasting a sensor, I just think “ka-ching, ka-ching.”

Note that I do not have to wear the CGM all the time, but I am finding it quite useful these days in helping me try to keep my blood sugars in better control.  We shall see how I am doing when I visit my endocrinologist in a couple of weeks.

So, there you have it.  There are a lot of other details and nuances about using a pump and CGM, and this was in no way meant to be scientific or comprehensive. But it thought it might give you a glimpse into what I – and so many other T1Ds – do every day of our lives.

 

Confessions of a tired T1D

I write this blog post, once again my diabetic head hanging in shame. And if not shame, in disappointment with myself.

I have been embarrassed to disclose my latest test results from June. Honestly, I really, truly thought my results would be better than last time, but no. (Heavy sigh).

Since the purpose of this blog is to motivate myself – and hopefully other diabetics – here goes:

  • Hemoglobin A1C: 9.0% (was 8.3%) [4.8-5.6%]
  • Serum Glucose Fasting: 114 mg/dL (was 147 mg/dL) [65-99 mg/dL]
  • BUN: 13 mg/dL (was 16 mg/dL) [6-24 mg/dL]
  • Serum Creatinine: 0.83 mg/dL (was 0.74mg/dL) [0.57-1.00 mg/dL]
  • TSH: 1.350 uIU/mL (was 2.090 uIU/mL) [0.450-4.500 uIU/mL]
  • Total Cholesterol: 201 mg/dL (was 185 mg/dL) [100-199 mg/dL]
  • Triglycerides: 167 mg/dL (was 133 mg/dL)  [0-149 mg/dL]
  • LDL Cholesterol: 103 mg/dL (was 92 mg/dL) [0-99 mg/dL]

Back to 4 of the big 8 being out of whack (even if 3 just inched up slightly). Can you see why I have been reluctant to share?

Hey, my fasting BG was 117 – yea! Save for small victories, I might be 5 out of 8 being on the wrong side of right.

So what happened?

  • I didn’t wear my CGM as often as I should.
  • I didn’t eat as well as I should.
  • I didn’t always bolus after I ate.
  • I didn’t exercise enough.
  • I didn’t test my blood sugar enough.
  • Sometimes I forgot to take my medications (even with one of those old people pill boxes sitting out on my counter).
  • Sometimes my pump reservoir became empty while I was sleeping and I waited several hours to refill it, so I’ve been without (new) insulin all that time.

There you have it. Confessions of a tired T1D.

Boo hoo, you’re probably saying. Get up off your blanking you-know-what and do something about it! And you’d be right.

So my next endo appointment is October 28. How can I ensure that I will be proud of my next set of test results?

  • I’ve been wearing my CGM more, but still not all the time. (I do get tired of being woken up at night to the alarms, and yes, I know that is the purpose of the alarms).
  • When I do wear my CGM, I am “forced” to test my blood sugar more times each day. (Kill two birds with one stone, you say? Another reason to wear it).
  • I have been exercising more. I have a puppy and I take him out for a walk 4-5 times a day at least. It may not be aerobic, but I am up off my blanking you-know-what and I’m sweating profusely in this South Florida summer heat. (I also mow my lawn each weekend, but I had a head cold and then sprained my ankle, so was out of commission for a while).
  • I have been eating better most of the time. Since my husband and I are now empty nesters, I’ve been cooking more vegetarian dinners. In fact, I got on the scale last week and was down 5 pounds.

Some other things I need to work on:

  • I am trying to take my medicine religiously, but I have missed a few days here and there.  That’s one I’ve got to figure out:  Why do I have a self-destructive attitude towards taking my medications? I pass by the pill box several times a day and don’t take them. I’ll leave my pill box empty without refilling it. Any suggestions for how I can stay on track with this one? (Perhaps recruit my husband to remind me? I’m sure I’ll handle that with grace and pleasantness).
  • I need to check my blood sugar and my pump reservoir before I go to bed each night.  It’s just stupid not to. One, if its high, I can correct and it shouldn’t be high all through the night. Two, if it’s low, I need to eat something. And three, if my reservoir is nearing empty, for goodness sake, get up off my blanking you-know-what and fill it.

Enough of being mad at myself, but sometimes me being mad or disappointed in myself is the best motivator.  (I wonder what that says about my psyche).

Anyway, thanks for being there.  I think I’ll press publish and head out to mow the back lawn. Oh, yes, and take my medications.

 

Coulda. Woulda. Shoulda.

It’s been a while since I’ve blogged, and I’m guessing that I was feeling subconsciously guilty because I didn’t do all the things I said I was going to do after my last visit with my endocrinologist.

Long story short, I am just very tired of dealing with diabetes. Poor excuse, I know. I honestly thought I had done better managing my BG the last 3 months, but, once again, it has crept up.

The news wasn’t all bad, though. My cholesterol is back to normal levels – YEA! The Crestor appears to be doing the job.

  • Hemoglobin A1C: 8.3% (was 7.9%) [4.8-5.6%]
  • Serum Glucose Fasting: 147 mg/dL (was 84 mg/dL) [65-99 mg/dL]
  • BUN: 16 mg/dL (was 14 mg/dL) [6-24 mg/dL]
  • Serum Creatinine: 0.74 mg/dL (was 0.69mg/dL) [0.57-1.00 mg/dL]
  • TSH: 2.090 uIU/mL (was 1.640 uIU/mL) [0.450-4.500 uIU/mL]
  • Total Cholesterol: 185 mg/dL (was 243 mg/dL) [100-199 mg/dL]
  • Triglycerides: 133 mg/dL (was 220 mg/dL)  [0-149 mg/dL]
  • LDL Cholesterol: 92 mg/dL (was 162 mg/dL) [0-99 mg/dL]

This time, 7 of the big 8 were in range. (Three months ago, it was 5 of 8; 6 months ago, it was 3 of 8). So the trend is definitely heading in the right direction.

My doctor had a very frank talk with me, and said that I am getting enough insulin – that I don’t need to increase my basal rate or my carb ratio. (Which was her diplomatic way of saying that I need to eat better and exercise more).  I knew that, but I didn’t want to face that. But it’s time to.

So here are my goals for the next 3 months:

  • Use my pedometer and walk more. She recommended getting 10,000 steps a day, regardless of how or when I get it. It doesn’t all have to be at one time during the day.
  • Eat better, portion wise and diabetes wise. Less carbs (duh!), leaner proteins, lots more vegetables. (I’m not a fruit fan, so we won’t even make those promises). Nothing I didn’t already know, but I take the easy (comforting) way out too often.
  • Use my CGM more. (I tend to test my BG more often during the days I am wearing my CGM, which will only help me manage everything better).
  • Blog more often so that I have accountability.

If I achieve all of these goals – even just most of the time – I believe my BG and A1C will reflect that, and I should even lose some weight (always a perk). And wouldn’t it be nice to go back in 3 months and have 9 of the 9 in range?

So…deep breaths, game face on, let’s do it!

Wish me luck.

If you ask how I am…

…then I won’t say inspired.*

So, it’s been a month since my last endocrinologist appointment, and I was so gung-ho about keeping up with my exercise, eating better and using all the great technology that I have…all with the hopes of getting my A1C below 7%.

WHAT HAPPENED?

I feel so unmotivated right now. I was doing pretty well until we went on our trip over the holidays. I don’t know if it was the fact that my BG was out of sorts and my CGM was waking me up constantly during the night, but I haven’t put my CGM on for almost 3 weeks now. And since I’m not wearing it, I’m not testing my BG as often as I should…so that means (if I keep on this trajectory) my A1C will most likely be higher than it should be. (I certainly haven’t had very many lows lately).

Grrrrrrrrrr…I get so mad at myself sometimes. It doesn’t take rocket science to know what you’re *supposed* to do.

<I’m going to pause now and get my CGM started>

There, that didn’t take very long…probably 3 minutes at most. Did I mention that I get so mad at myself sometimes?

I guess this is diabetes fatigue. I admire diabetics who can be so rigorous with the management of their condition for years and years. I go through stages. When I was pregnant with my 2 children, I was almost perfect. Lately, not so much.

Sometimes I just get so tired of thinking about every single thing I eat or drink, how exercise is going to make me feel, whether that tingling in my left arm is carpal tunnel or something else…after 30+ years of this, it does get old.  I call these episodes my “rebellious” times.

I know…WAH. WAH. WAH.

Sorry for being a downer, but it’s how I’m feeling right now, at least about how I’m handling my T1D.

I’m curious – how do you (or your diabetic loved ones) stay motivated? I’m very interested in learning some new strategies that may help me get through these rebellious times better.

Anyway, if nothing else, at least writing this blog post guilted me into getting my CGM going again. (smile)

*For those of you who know me, that’s a play on one of my favorite Elton John/Bernie Taupin lines (“If you ask how I am, then I’ll just say inspired”).

(Sigh)

I had so hoped to have better news to report after the latest visit with my endocrinologist, but…(sigh)…after what I can honestly say has been more rigorous management of my diabetes, including 4-5 BG tests a day, using my new CGM for the last two months and increasing my exercise from 1-2 times per week to 4-5 times per week, here are my latest numbers (drawn on December 16, 2013):

  • Hemoglobin A1C: 7.9% (was 8.5%) [4.8-5.6%]
  • Serum Glucose Fasting: 84 mg/dL (was 117 mg/dL) [65-99 mg/dL]
  • BUN: 14 mg/dL (was 14 mg/dL) [6-24 mg/dL]
  • Serum Creatinine: 0.69 mg/dL (was 0.73 mg/dL) [0.57-1.00 mg/dL]
  • TSH: Not tested (was 1.640 uIU/mL) [0.450-4.500 uIU/mL]
  • Total Cholesterol: 243 mg/dL (was 229 mg/dL) [100-199 mg/dL]
  • Triglycerides: 111 mg/dL (was 220 mg/dL)  [0-149 mg/dL]
  • LDL Cholesterol: 162 mg/dL (was 131 mg/dL) [0-99 mg/dL]

This time, 3 of the big 8 were out of range. I guess if I was an optimist, I would’ve phrased that differently, saying that 5 of the 8 were in range.  It’s definitely better than last time (when that was true for only 3 of the 8). Once again, I’m “headed in the right direction,” but not where I should be. Proof point: An A1C of 7.9% means that my average blood sugar during the last 2-3 months was around 180 (vs. 3 months ago, when it was 8.5%, which is an average blood sugar of 197). I really thought it would be much better than that. Really. Maybe not below 7%, but a lot closer to 7% than it was.

Did I (sigh) yet?

And yes, I know how A1C sometimes lags, and my doctor looked at the data and trends from my pump and said I’m all over the place – too many lows and too many highs. So, I’ve just go to do better. Heard that before.

But what the heck is going on with my cholesterol? My doctor is going to run my TSH, because she said if that is off, it can affect my cholesterol. If it’s normal, then she’s going to change my prescription from Lipitor to Crestor.  I’m figuring I can do my thing and keep exercising and trying to eat better, too.

So, there you have it – a disappointing visit. But I won’t let that get me down. Here’s the plan of action I worked on with my doctor:

  • Continue exercising
  • Use the dual wave bolus when I have high fat meals
  • Lower my temporary basal rate when I exercise to keep from getting too low
  • Continue using my CGM and tweak my basal and carb ratios as appropriate

On to the next 3 months!

Have insulin, will travel

Ah, you can never pack lightly when you’re a diabetic, can you? I just recently took a 3-day trip to Atlanta, and I swear half my bag was diabetes supplies! (That and shoes, but I digress).

Not including my diabetes supplies!

I’ve never had an issue when going through airport Security wearing my pump. Occasionally (and lately, more and more), I’m pulled aside by Security and they’ll swab my hands after I touch my pump. No biggie. And one time, when I traveled to Buenos Aires, Security wanted me to take my pump off (because it looks like a beeper, I think). I tried to explain what it was by saying “insulina, insulina” and that finally worked.

Here are some tips for what to pack when you travel. As they say, don’t leave home without it!

  • At least twice as much medication as you think you’ll need. (For insulin, I usually bring a new bottle of insulin in its box and with the prescription information on it. For my oral medications, I bring the original, labeled medication bottles, even though that takes up more room in my luggage).
  • Pump supplies (I usually pack 3x times what I think I’ll need for infusion sets and reservoirs. I also try to set up a new infusion set just prior to going on my trip so that I won’t have to change it for a few days).
  • CGM supplies (sensors, transmitter, charger, inserter and tape)
  • Syringes (Even if you use a pump, you may need to give yourself injections if something fails)
  • Batteries
  • Glucometer and charger
  • Test Strips
  • Glucose tablets (or hard candy, in case you experience an LBS)
  • Food/Snacks (I usually carry peanut butter crackers or pretzels and something sweet, just in case)

Do make sure that some of your supplies and medications are packed in your carry-on, if you’re traveling by plane. (I usually split them between my carry-on and my checked baggage, although I always carry my insulin with me). Not only might your luggage travel somewhere else, but you don’t want your medication exposed to extreme temperatures.

And test regularly! Traveling, time zones, and being out of your routine can all contribute to unexpected blood sugar behavior.

Here are some great resources for traveling tips for diabetics:

What do you do when you travel? Please share your tips and advice.

And safe travels, everyone!

Diabetes fatigue is not just for diabetics

You know, it’s not just us diabetics who get tired of dealing with the disease. We can’t forget that our family members and perhaps others who are close to us have to deal with the realities of diabetes each and every day, too.

Maybe they don’t have to check their blood glucose, figure out how many carbs they just ate or give themselves an insulin shot, but, believe me, there’s not a day that goes by that they’re not aware that we have diabetes.

I try not to make a big deal of things. Most of the time, my immediate family doesn’t realize that I’ve tested my blood glucose or given myself a bolus (one of the advantages of a pump). It’s just part of what I do, and I try not to draw too much attention to it.

That doesn’t mean I hide my diabetes. On the contrary, I was always very honest with my kids, especially when they were young. I showed them how Mommy tests her blood glucose, how she gives herself shots and all of that. They’ve come to expect that these things are just part of who I am.

Funny thing, with my CGM, I can’t really hide what’s going on anyway, what with all the beeping and other alarms going off. Let’s just say my sister recognizes the sound of the “test your blood glucose” alarm by heart, and my husband has often commented how my “pump was going off all night” (always with a smile on his face, too).

But sometimes – especially in those lovely hypoglycemic moments – you just can’t do it alone. Sometimes you need a reminder (perhaps a friendly, “Do you need to check your blood sugar, Kim?”). Sometimes its as easy as getting out of your path to the refrigerator so you can get those carbs that will bring your blood glucose back up. Other times, you may need their help desperately, especially if you don’t (or can’t) recognize the onset of hypoglycemia.

Luckily, I am usually able to recognize when my blood glucose is getting too low (especially when I’m using my CGM), and so is my family. I have a few quirks that they have come to associate with low blood glucose: twirling my hair (such that it gets very messy, which is so not me), not being able to complete sentences (almost like I’m drunk) and the ever dreaded bitchiness.

So, if your family members sometimes get tired of dealing with it, give them a break. Try not to get mad at them – remember that they do so much for you all the time, every day, day in, day out. They deserve time off for good behavior.

Anyway, this is just my way of recognizing that there are many people involved in a diabetes support system. Let this blog post serve as a shout out to all of those people who support me – THANK YOU, THANK YOU, THANK YOU!