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.

 

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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.

 

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!

Why does insulin smell like Band-Aids?

I’m sure you’re at the edge of your seat waiting to hear the answer to that question. (It has bugged me for many years, especially the day I broke not one, but two, vials of insulin on my tile floor).

Just today, the subject came up again. My husband walked into the kitchen from a completely different side of the house and said, “I smell insulin.” (I had just refilled my insulin pump – without spilling a single drop, I might add). To which I responded, “Then you smell Band-Aids.”

Which is when I decided it was about time to do some internet sleuthing (AKA googling), from which I discovered that it has to do with a chemical (meta-cresol) that is used in preserving and stabilizing many brands of insulin. (My drug of choice is Novolog). Meta-cresol is also used in many medical and antiseptic products. And…you got it – Band-Aids is one of them. Voilà!

Apparently, scotch also smells like Band-Aids…but I’ll leave that one to you.

Team Kimoreena walks for the cure!

During my last appointment, my doctor handed me a brochure on the Step Out: Walk to Stop Diabetes event sponsored by the American Diabetes Association. Her office has a team, and she encouraged me to walk, too.

As I’ve mentioned, I’ve been a diabetic for 30+ years, and I’m not sure why I’ve never been active in the cause. I certainly have benefitted from advances in diabetes care and technology over the last several years (thanks to having a great health insurance plan). After all, I’ve gone from giving my self 6 shots a day to using an insulin pump and a CGM to manage my diabetes.

It struck me that I should do something – anything – to try to help the cause. So sponsoring a team and raising money to support research for a cure seemed like a great place to start.

And that it was! On October 26, 2013, Team Kimoreena – my daughter, my sister and I – walked the walk in Fort Lauderdale and raised $1500.  I’m very proud of us, especially since this was our first time participating in the event. It was great to feel the energy of the crowd and see so many people walking with us:

Crossing the New River Bridge

Crossing the New River Bridge

What was especially cool was seeing my sign along the walk:

My Sign!

My Sign!

Since then, I’ve been trying to walk at least 4 times a week, just for me. I know how important exercise is to managing my diabetes (although I haven’t always been great at executing on that knowledge). Anyway, while I was walking, I got the idea to write a blog. I’m not a scientist nor a healthcare professional, but I have lived with this disease for 30+ years, which (IMHO) makes me kind of an expert. I’ve lived the anxieties, the frustrations, the highs and lows (literally), the pride of having an A1C below 7, the guilt of having a newborn baby in NICU because of his “low blood sugar transition”…the list goes on and on.  I know it will help me to blog about my experiences – and if it helps someone else as well, then I will be so proud.

So now, I don’t want to just walk the walk, but I want to talk the talk, through this blog and social media. I have a voice – and so do the millions of other diabetics out there.

Together, we can work to find a cure. Now.

You can also follow me on Twitter and Facebook.

Open Kim-ono

So today (and with each endocrinologist appointment from here on out), I’m going to post my A1C and other pertinent test results. I am not always proud of them, but I’m hoping this “open kimono” approach will inspire me to keep motivated and aggressive in managing my diabetes.

My latest blood work was done on August 16, 2013.  Here’s what it showed:

  • Hemoglobin A1C: 8.5% [4.8-5.6%]*
  • Serum Glucose (Fasting): 117 mg/dL [65-99 mg/dL]
  • BUN: 12 mg/dL [6-24 mg/dL]
  • Serum Creatinine: 0.73 mg/DL [0.57-1.00 mg/dL]
  • TSH: 1.640 uIU/mL [0.450-4.500 uIU/mL]
  • Total Cholesterol: 229 mg/dL [100-199 mg/dL]
  • Triglycerides: 220 mg/dL [0-149 mg/dL]
  • LDL Cholesterol: 131 mg/dL [0-99 mg/dL]

So, 5 of the big 8 were out of whack. BUT…the good news is that these values were all down significantly from the previous tests that were done in May.  This means I’m headed in the right direction, although not at goal. Encouraging, but I’ve still got work to do. [And, as a diabetic, that work never, ever, ever goes away].

An A1C of 8.5% means that my average blood sugar during the last 2-3 months was around 197, just shy of the big 200.  Not good, and I know I can do better.

As a side note, we do tend to focus on our A1C numbers every 3 months, but the other values are also very important, especially since the risk of heart disease and stroke is 2-4 times higher in diabetics than non-diabetics. They’re all interrelated. I’m pleased (relieved?) that my kidneys are still functioning well, my hypothyroidism is in check and my eyes aren’t showing signs of retinopathy (just middle age). Diabetes isn’t an isolated condition, it’s systemic. (It’s kind of like that old Whack a Mole game, where you get one mole and another pops up and then another one…)

My plan of action:

  • Get back to using my CGM more regularly, because it provides me with real-time data on which I can take action.
  • Exercise more!
  • In general, eat healthier (less red meat, more vegetables, smaller portions)…
  • My doctor increased the dosage of my cholesterol medication, so hopefully that will help get those numbers down.
  • I bought a S/M/T/W/Th/F/S pill box to make sure I take my medications every day. (I feel so old).

My next scheduled appointment is in December. The holidays are never a good time to have your blood work done (and get on the scale!), but you’ve just got to do it. My new mantra: Don’t be afraid of your A1C!

*Who are they kidding? For a diabetic, if I can get below 7.0%, my endocrinologist and I are thrilled! Time to celebrate (just not with food)!

The Lingo

If you overheard a conversation between a diabetic and his/her endocrinologist, you quite possibly might think they’re speaking in a foreign language. Here are some of the common terms that frequent a diabetic’s vocabulary and may pop up from time to time in this blog:

Note:  Thanks to the American Diabetes Association for official definitions. My interpretations are noted in […].

A1C
A test that measures a person’s average blood glucose level over the past 2 to 3 months.  Also called hemoglobin A1C or glycosylated hemoglobin, the test shows the amount of glucose that sticks to the red blood cell, which is proportional to the amount of glucose in the blood. [One of the best tools you have for managing your diabetes. Don’t be afraid of it!]

Basal
A steady trickle of low levels of insulin, such as that used in insulin pumps. [Not the herb]

Bolus
An extra amount of insulin taken to cover an expected rise in blood glucose, often related to a meal or snack. [You’d think by now I’d never forget to bolus, but…]

Blood Glucose
The main sugar found in the blood and the body’s main source of energy. [So it’s not necessarily a bad thing]

Blood Glucose Level
The amount of glucose in a given amount of blood. It is noted in milligrams in a deciliter, or mg/dL. The normal range is 80-120 mg/DL. [This is why I am literally sweeter than the next person]

Blood Glucose Meter
A small, portable machine used by people with diabetes to check their blood glucose levels. After pricking the skin with a lancet, one places a drop of blood on a test strip in the machine. The meter soon displays the blood glucose level as a number on the meter’s digital display. [Don’t leave home without it!]

BUN (Blood Urea Nitrogen)
A waste product in the blood from the breakdown of protein. The kidneys filter blood to remove urea. As kidney function decreases, the BUN levels increase. [Luckily, my BUNs have always been good]

Carbohydrate
One of the three main nutrients in food. Foods that provide carbohydrate are starches, vegetables, fruits, dairy products and sugars. [AKA carbs and no, eliminating carbs from my diet will not make my diabetes go away]

CGM
A Continuous Glucose Monitor (CGM) determines glucose levels on a continuous basis (every few minutes). A typical system consists of:

  • a disposable glucose sensor placed just under the skin, which is worn for a few days until replacement
  • a link from the sensor to a non-implanted transmitter which communicates to a radio receiver
  • an electronic receiver worn like a pager (or insulin pump) that displays glucose levels with nearly continuous updates, as well as monitors rising and falling trends

[I’m lucky enough to use both an insulin pump and a CGM]

Creatinine
A waste product from protein in the diet and from the muscles of the body. Creatinine is removed from the body by the kidneys; as kidney disease progresses, the level of creatinine in the blood increases. [Just wait ’til you get to do a 24-hour Creatine Clearance Test – fun, fun, fun!]

Diabetes Mellitus
A condition characterized by hyperglycemia resulting from the body’s inability to use blood glucose for energy. In Type 1 diabetes, the pancreas no longer makes insulin and therefore blood glucose cannot enter the cells to be used for energy. In Type 2 diabetes, either the pancreas does not make enough insulin or the body is unable to use insulin correctly. [A diagnosis, not a character flaw]

Diabetic Coma
A reversible form of coma experienced by people with diabetes, most often caused by severe hypoglycemia or diabetic ketoacidosis.  It is a medical emergency. [Happy to report, no experience with this to date]

DKA
Diabetic Ketoacidosis is an emergency condition in which extremely high blood glucose levels, along with a severe lack of insulin, result in the breakdown of body fat for energy and an accumulation of ketones in the blood and urine. Signs of DKA are nausea and vomiting, stomach pain, fruity breath odor and rapid breathing. Untreated DKA can lead to coma and death. [Again, no experience with this to date]

Endocrinologist
A doctor who treats people who have endocrine gland problems such as diabetes. [Your endocrinologist can be your biggest ally. Don’t be afraid of him/her!]

FBS 
Fasting Blood Sugar is a person’s blood glucose level after the person has not eaten for 8 to 12 hours (usually overnight). [The bane of my existence, as this, for me, is rarely in the normal range]

Hyperglycemia
Excessive blood glucose. Fasting hyperglycemia is blood glucose above a desirable level after a person has fasted for at least 8 hours. [Pretty much a constant for me].

Hypoglecemia
A condition that occurs when one’s blood glucose is lower than normal, usually less than 70 mg/dL. Signs include hunger, nervousness, shakiness, perspiration, dizziness or light-headedness, sleepiness, and confusion. If left untreated, hypoglycemia may lead to unconsciousness. [Did they mention extreme grouchiness as a sign?]

Insulin
A hormone that helps the body use glucose for energy. The beta cells of the pancreas make insulin. When the body cannot make enough insulin, it is taken by injection or through use of an insulin pump. [My drug of choice].

Insulin Pump
An insulin-delivering device about the size of a deck of cards that can be worn on a belt or kept in a pocket. An insulin pump connects to narrow, flexible plastic tubing that ends with a needle inserted just under the skin. Users set the pump to give a steady trickle or basal amount of insulin continuously throughout the day. Pumps release bolus doses of insulin (several units at a time) at meals and at times when blood glucose is too high, based on programming done by the user. [The pump + A CGM + My brain = My external pancreas]

Interstitial Glucose
The level of glucose in the interstitial fluid, which is liquid found between the cells of the body. A CGM measures the interstitial glucose level. [This is not the same as your blood glucose level, although can be very close. You still need to stick you fingers to confirm hypo- or hyperglycemia before taking any action.]

Ketone
A chemical produced when there is a shortage of insulin in the blood and the body breaks down body fat for energy. High levels of ketones can lead to diabetic ketoacidosis and coma. [You check your ketone levels by checking your urine]

Lancet
A spring-loaded device used to prick the skin with a small needle to obtain a drop of blood for blood glucose monitoring. [The ouchie]

Postprandial Hyperglycemia
Blood glucose above a desirable level 1 to 2 hours after a person has eaten. [Another bane of my existence].

Retinopathy
An eye disease that is caused by damage to the small blood vessels in the retina and may result in loss of vision. [Preventing this is why I’m *supposed* to go to the opthalmologist once a year]

Type 1 Diabetes
A condition characterized by high blood glucose levels caused by a total lack of insulin. Occurs when the body’s immune system attacks the insulin-producing beta cells in the pancreas and destroys them. The pancreas then produces little or no insulin. T1D develops most often in young people but can appear in adults. [That’s me!]

Type 1.5 Diabetes
Also known as Latent Autoimmune Diabetes in Adults (LADA), Type 1.5 Diabetes is a more slowly progressing variation of Type 1 diabetes and is often misdiagnosed as type 2. [In hindsight, this is most likely my original diagnosis, although it wasn’t identified until 1993 – and I was diagnosed in 1983]

Type 2 Diabetes
A condition characterized by high blood glucose levels caused by either a lack of insulin or the body’s inability to use insulin efficiently. T2D develops most often in middle-aged and older adults but can appear in young people. [I have moved on]