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!

The types that bind

If you’ve read any of my other blog posts, you know that I have quite a history of diabetes in my family. (Beauty, intelligence, and, of course, wit, are also prevailing family traits).

I thought I’d document the history (but leave names out to protect the innocent):

My family history

My family history

The people within the circles have diabetes. I’m in the second row, #3 from the left (so 4 of 6 siblings are diabetic, 3 T1D, 1 T2D).

Of these 4 generations, 10 out of 21 relatives have diabetes. My nephew’s 20-month old son was just diagnosed T1D.

So what does this mean?

  • I fear that my children will be receive the dreaded diabetes diagnosis.
  • My family is really, really sweet.
  • It’s kind of funny when we all get together, all the paraphernalia we have to carry with us and use.
  • A family that’s diabetic together, (finger) sticks together?

I personally would like to understand the genetics of diabetes better. According to the ADA web site:

  • In most cases of T1D, people need to inherit risk factors from both parents. These factors must be more common in whites because whites have the highest rate of T1D.
  • T2D  has a stronger link to family history and lineage than type 1, although it too depends on environmental factors.
  • In general, if you are a man with T1D, the odds of your child developing diabetes are 1 in 17.
  • If you are a woman with T1D and your child was born before you were 25, your child’s risk is 1 in 25; if your child was born after you turned 25, your child’s risk is 1 in 100.

Both my children were born after I was 30, so hopefully that’s one positive factor in their favor.

Anyway, wouldn’t it be cool if IBM Watson chugged on and analyzed all the diabetic big data that I know is out there and help come up with a cure for this disease (or at least better ways to manage it). While we’re building that Smarter Planet, let’s build a Smarter Diabetic.

What’s your family history? Comment and let me know – I’d love to hear from you. Remember, we’re all in this together – we’re the “types” that bind.

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]