No, I’m not making it up. Roche Diabetes Care, makers of the ACCU-CHEK® meters and test strips has named August 30-Sept 5 National Infusion Site Awareness Week – and with good reason.

For those who use an insulin pump there are a few things to pay mind to and your infusion site is one of them. 

The infusion site is the area of skin where a pump’s needle introduces a little plastic tube under your skin for  insulin delivery. 

Cleaning the skin properly before the needle insertion and rotating your infusion site each time so you don’t use the same spot can prevent infection and the build up of scar tissue that can block the flow of insulin.

A 2007 study in the American Diabetes Association journal Diabetes Care reported that some adult patients experience as many as 12 issues of irritation or infection a year because of improper site maintenance.

Infusion site management includes: choosing a location on your body, cleaning and preparing your skin at the site, properly inserting the needle, regularly rotating the insertion site to avoid infection and monitoring insulin flow. It’s recommended people change their infusion site every three days and not use the same site for about two weeks.

Notable irritations due to infusion site problems include: having two unexplained high blood glucose readings in a row, itching, burning, pain, blood or air in your tubing.

Roche launched Infusion Site Week to help diabetes educators increase understanding and education among their patients. Roche has also distributed Infusion Site Awareness Week kits to CDEs across the U.S.

Inside is a DVD, fact sheets and talking points, calendar, buttons, media outreach materials and site tattoos. I know because I got one. If you’d like to request a kit you can do so here.

Actually, I don’t use an insulin pump but today I’m wearing the pin and I’m sporting one of the tattoos that came in the box. The tattoos are meant to mark where your infusion site is so you don’t use the same spot twice.

Of course I thought about tattooing all my injection sites until I realized there’d be no skin left showing on my body. 

 Today, the last of diabetes blog week, the task is to pretend a cure has been found. We are all given a tiny little pill to swallow and *poof* our pancreases are back in working order. No side effects. No more insulin resistance. No more diabetes. Tell what your life is now like. Or take us through your first day celebrating life without the Big D. 

Blog about how you imagine you would feel if you no longer were a Person With Diabetes. 

I realize what a huge shift it is to think of what my every day would be like if diabetes were not in it: To eat without a second thought about what I’m eating and how many carbs are in it and how much insulin I have to load in my syringe. That seems the biggest technical change that would occur. Also, to not stab myself with needles – both for taking insulin and testing my blood sugar – a dozen times a day or see blood sugar trails in my kitchen and on my clothes. 

To not have lows, but get through a string of days, geez every day, without feeling my heart beat out of my chest or that I HAVE TO EAT to save my life. How I hate that. 

To not have to get up in the morning – no matter what the time  – jump out of bed (usually 6:30 AM) and test my blood sugar so I can take that first injection to blunt my early morning rise. Of course that’s followed by a bolus for breakfast and a basal shot for the day. 

Three injections before 8 AM, no more. Sleep, with nothing hanging over me. Now that’s a sweet dream. 

I seem to be caught up in what wouldn’t be. For it’s so hard to imagine what would be if I no longer had diabetes. So hard to nail after 38 years. 

While you know the score – every day is a new day you have to manage your food, exercise, insulin, emotions, time and activities, the daily ongoing chore of doing this has long been my life – it’s just what I know after all these years. To rewind to before what has been two-thirds of my life is a distant memory. To fast-forward to not having diabetes is like a sci-fi-like imagined future. 

And since, for the past seven years my work has been diabetes, thinking of life without it conjures up a multitude of feelings:

1)   Who am I? Diabetes has lived with me for almost 4 decades

2)   Yikes! What the f_ _k am I going to do for a living?!

3)   Whewwww – the sound of every short-term worry and long-term fear slipping off my shoulders

4)   I’m just like everyone else. Hmmm.. is that a good thing?

5)   I’m leaving this space blank for when it really happens. 

After all, I’ve been hearing for years it’s going to happen any minute now .

 I truly think type 1 and type 2 diabetes should have completelydifferent names. Yes, they both have “insulin inefficiency” and wacked out blood sugars in common, but their causes and related health conditions are different, and equally significant, managing the two are generally far from the same thing, and our lives with diabetes are far from the same. 

I know this well, I don’t need confirmation, yet yesterday while on the phone with three of my closest friends with diabetes I was surprised by how acute and visceral this knowledge is becoming for my type 2 friend who is learning to use an insulin pump. “That freakin’ daily log I have to keep now” she said. “I’ve worn my hands out! And, I’ve never been so attached to glucose tabs before! If I’m out gardening I’m going low. Last night I was 71 before going to bed. What do I do?!” Ah, welcome my type 2 to my type 1 world.

We four met as A1C Champions: We travel around the country giving educational presentations to fellow patients, sharing our personal story of living with diabetes hoping to inspire our audiences to better manage their diabetes. Most of the Champions have type 2 diabetes, yet not surprisingly of these four friends, three of us have type 1. Not surprising because for type 1s there is an intrinsic bond as pervasive and invisible as our condition; we see our mutual struggle in each other, we know intimately the burden we manage every day, and, that no one else sees it. That said, we three type 1s adore our type 2 friend. She is one of the most open, caring, curious and both emotionally and diabetes-intelligent people I know.

So, we were all on the phone yesterday at the request of our type 2 friend who was seeking our type 1 counsel about her pump. Her blood sugar control is far better overall, but “lows” are more frequent. “Before (15 years worth) I rarely went below 85 or 90,” she said with tempered evenness. “Now about every third day I’m going low! Even shopping can make me go low!! TWENTY MINUTES IN WALMART AND I’M REACHING FOR THE GLUCOSE TABLETS!!! 

This will straighten out. She is working with her endocrinologist to refine her basal calculation (the amount of insulin the pump delivers throughout the day). Also, since her blood sugars now hover at a lower level than they used to, she’s paying more attention so that they don’t go too low. 

My friend has discovered through this pump experience a new understanding and respect for what type 1s live with every day, pump or no pump. And I was made more aware through our conversation of just how truly unknowing others are of what we deal with everyday, even those with type 2 diabetes. 

So there we were, three type 1s throwing out ideas to help our type 2 friend with her pump until she sees her diabetes educator again. “Eat the same three meals, and only three, every day for a week to figure out your basal rate.” “Get a book on pumping by John Walsh or Gary Scheiner and devour it cover to cover.” “Make sure you’re using multiple basal programs for different hours of the day and night when you need varying amounts of insulin.” “Don’t just eat glucose tablets if you’re low, they don’t last that long. Make sure you eat some protein too.” “Well it’s a toss up whether to detach from the pump when you’re going low to stop the insulin drip or eat a snack. Of course that could lead to weight gain.” And finally, “Accept that even if you do the same thing every day your body will not act the same way every day.” The true mantra of type 1.

I don’t write this to discourage you if you’re a type 2 thinking of a pump. My type 2 friend is definitely benefitting. Her blood sugars are lower overall, she is taking less insulin, this is allowing her to lose some weight and when not worrying about lows, which will rectify themselves once her program is worked out, she feels better and more motivated to do better seeing her numbers improve. Also, she has a real awareness now that her actions affect her results. “It’s a real eye-opener to see on paper that what I do affects everything,” she told us. “It’s made me more judicious about what I eat. I see so clearly now that I’ll have to add more insulin if I eat that. It’s made me see my management all quite differently.” That’s indeed good news.

An insulin pump, I’ve been reading in preparation to go on one myself next year, typically reduces the amount of insulin one needs. Something about how it saturates your cells with insulin and mimics the normal functioning of a healthy pancreas. For Type 2’s the insulin requirement can drop by a third or nearly half. My friend used to give herself 4 units of Apidra (rapid-acting insulin to cover meals and make corrections) to come down 80 points, now it’s more often 1 unit. 

I also had a second awakening. Hearing my type 2 friend’s astonishment and growing understanding of how a type 1 lives – the constant attention our condition requires – and her experiential understanding now of what my type 1 friend expressed as, “I have a constant awareness of lows, 24/7 that absolutely borders on fear,” I have an even greater appreciation for the hardship I live with and how well I do most days (with minimum moaning and groaning.) 

As my type 2 friend said, “This is a big learning curve let me tell you!” You’ll find no argument here.

Depending upon the day, my mood, who I’m with, the conversation, whether or not my oatmeal burned that morning, my feelings about living with diabetes vary. Some days are almost a breeze, other days I’m exhaustedly fed up with all it takes and soooooo annoyed no one really gets it.

With that, I wanted to spotlight these diabetes musings that reflect only two of the many sides of living with diabetes. One is a page from my book, “The ABCs of Loving Yourself With Diabetes,” which coaches you to more often engage your positive emotions – like kindness, forgiveness, strength, courage and appreciation – to manage your diabetes, and your life, with greater ease and happiness. It’s featured in the current newsletter from TCOYD(Taking Control of Your Diabetes.) TCOYD, headed by Dr. Steven Edelman, who has type 1 diabetes and was named Educator of the Year this year by the American Diabetes Association, brings informative and inspirational one day health fairs and conferences across the country to people with diabetes.  

Then two weeks ago, Catherine Price, a blogger over at A Sweet Life, shared her story of living with diabetes in the New York Times, “Thinking About Diabetes With Every Bite” and it was as if she was telling my own tale: The constant rigor, calculations, analysis and invisibility of living with diabetes, particularly type 1 diabetes where you must inject insulin and test blood sugars several times a day, every day, to manage it.

For me, both sitting in the positive and dealing with the sometimes grinding daily tasks co-exist – sometimes simultaneously, sometimes in parallel and sometimes at unsettling right angles depending upon the day. But always like a chronic condition they are there, the many sides of diabetes rising and falling, ebbing and flowing, expanding and contracting as we learn, move, grow, expand, collapse, relapse and press on again. 

Yesterday I had the rare good fortune to do one of my favorite things. Shoot the breeze with other PWDs (people with diabetes if we’re being politically correct). Miriam Tucker, medical journalist, was in town and invited a bunch of us to brunch. At the table were also Dan Hurley, whose new book, Diabetes Rising, is due out this January, Joy Pape, cde and author, Lee Ann Thill, blogger of The Butter Compartment – don’t you just love it – and art therapist, and two of my fellow peer-mentors, Ruth Charne and Ann Gann. 

 

We assembled at 12:30 and didn’t leave till 3 PM. That gives you an idea of the spirited and passionate conversation we were having, that I would venture to say, always erupts when you fill a table with opinionated PWDs – oops that’s redundant. 

 

When we left I said how much fun it had been because I always learn something. The first thing I learned was no one knew any better than me how many units of insulin it takes to cover a galette as you see above – the house specialty of the French bistro where we were dining. Their galette arrived as a thin buckwheat pancake with an egg on top and spinach inside. (Yes, I was deviating from my typical low-carb meals, but it was their speciality…) 

 

As I peered at it in front of me I asked my table-mates how many carbs do you think this is? Everyone leaned across the table to inspect and then perplexed faces looked back at me. Each guess ventured was obviously and apologetically offered as a guess. And while it didn’t help my dosing any, I warmed and basked in the knowledge that I’m not the only one who’s guessing at my dose a good deal of the time – and even here among such a highly educated group! Of course this led to the timeless debate about low-carb diets, adherence, what does it mean to be “good” or “bad” and as Miriam looked at her pump, unsure it was working, the value of wearing an insulin pump. At the table three did, two didn’t, one had and one’s beginning. I’m waiting on the Solo Micropump to throw my hat in the ring.

 

We wondered whether pharmas are really invested in curing diabetes. Well, it seemed not many of us really wonder. We talked about what defines “screwing-up” in diabetes – is it just getting a bad number or consciously eating something you “shouldn’t.” That led to should there be “shouldn’ts?Which led to talk about “compliance” and “non-compliance”: Are these appropriate terms for diabetes? The general consensus was they work well for doctors, who are used to thinking in terms of tasks done and not done, but not patients who are living busy and complex lives where doing or not doing a diabetes task is never about one thing. We chatted about why do we feel guilty, even after living with diabetes for more than 30 years and knowing full well our numbers are sometimes not a reflection of our actions, why do we still feel guilty or ashamed with a number like 300? 

 

You should have been there, you would have loved it. If you have a bunch of PWDs in your area why not invite them all to lunch? I promise you it will be educational and entertaining. 

 

For those who wonder, turns out I guessed really well for my galette. With an insulin to carb ratio of 1:17, 2 1/2 units of Apidra left me at a perfect 91 before dinner. Truly it was the gods coming together saying, “riva, today we’re going to give you a break.”

 

My sincerest thanks to Miriam for arranging brunch and to all who came. And Katie you were missed. There’s little I find more delicious than having food with those who really get it – simply because they really got it.

If I think about it, most mornings when the weather isn’t obvious, I stand at my living room window while my oatmeal is simmering on the stove, squinting through the trees outside to see if it’s raining or not. When the TV news, on in the background, announces the weather, I pay attention. Well, sort of. It seems to go in one ear and out the other as I’m up and down, in and out of the kitchen stirring, testing my blood sugar, shooting up my long-acting and rapid-acting insulin, trying to think back if I already took one unit of my rapid-acting insulin to blunt the dawn phenomena (rapidly rising early morning blood sugar) and cleaning up the little blood splatter that’s trickled off the used strip onto the counter and cabinets. (I omitted that I’m lately careful to open the lid of the strips canister slowly and quietly after my husband said one day, “Every time I hear that snapping sound it makes me feel horrible knowing you’re going to hurt yourself again.”) Judging the weather for the course of the day is all about when I will take my daily walk, which is a big determinant of how much insulin I’ll inject for breakfast. 

 

Some version of this goes on throughout a fair part of the day: Hmm…maybe I should move my 9:30 AM walk to around 11 AM and walk to a subway station further away from my home that’ll take me into the city where I’m meeting friends for lunch. Wonder what’ll be on the menu for lunch? Better remember to take my insulin. Hmm..should I put it in my bag now?…But, the weather guy said “chance of showers” this morning…hmm…do I remember what time? 

 

Of course at the restaurant I spend time studying the menu trying to chose something that isn’t a lot of carbs, then spend time analyzing what’s on my plate when it arrives so I can take my best guess how much insulin I need to cover it. Done. Probably should check in a few hours, though, to know how well I guessed. After lunch it’s finally bright sunshine so I decide now (not when I took my bolus for lunch) that I really want to walk the 23 blocks downtown where I’ll grab a subway back home. Damn! I didn’t plan for this but I can’t resist walking in the city on a beautiful day. The heck with it, I’ll just have to deal with it when the low comes. Hmm…will it come? If I took just a little less insulin than I actually needed for lunch then the walk will balance my blood sugar out. Hmm…

 

Guess not. Almost at the train station I feel my heart beating rapidly, I’m a little sweatier than I would be normally…Can I hold on till I’m down on the train platform or do I have to stop now and break my stride and handle this? Jeez, the third time this week! When am I going to get better at judging all this? Should I stop? Shouldn’t I? Should I stop? Shouldn’t I? Wow, why can’t I figure this out. Oh… I… get… it… I’m …really… low. Beettteer …stop! 

 

I eat a roll of SweeTarts and 10 or so minutes later my body’s back to normal. But my head is still calculating: Where/how could I have avoided this? CouldI have avoided this? 

 

It’s only 3 or 4 PM on a typical day and look how much of my time, energy, moments I’ve devoted to my diabetes. Oh, yeah, I forgot, this morning three people sent me emails telling me that I should get the H1N1 flu shot. Should I? I’ve never gotten a flu shot before. I know this flu is supposed to be really bad and diabetics are on the critical list. Should I ask my doctor? Do more research on the web? Just do it? Just not do it? Hmm…will have to give this more thought.

 

Granted, some of my friends think I’m obsessive – you probably do too now, but probably not if you live with insulin-dependent diabetes. In full disclosure it did take me 37 years to decide to get a medic alert bracelet (admittedly I wasn’t thinking about it ALL the time.) And I have been thinking about getting a pump for the last five years, although not ALL the time. 

 

Everyone talks about how diabetes tasks are a lot to handle. But I’m not talking about those time-grabbers like: Calling to make a doctor’s appointment (GP, endo, podiatrist, cde, dietitian, ophthalmologist) getting there and hanging out in the waiting room. Or checking how much synthroid, apidra, lantus I have left and judging when I have to call my health insurance company to refill my prescriptions. I’m not talking about the time spent calling my health insurance company to get more test strips or going to the lab for my blood tests, or thinking through all the extra medicines, syringes, testing supplies and back-ups I have to take when packing, or what/how much food to pack if I’m getting on a plane or a long train ride and making sure I get to the supermarket to get something healthy. I’m not even talking about the on-going supportive phone calls with my diabetic friends or the short quarterly crying jags from being tired of all this. 

 

No, I’m talking about how many moments of every day my energy is stolen by needing to analyze, calculate, plan, prep, correct, stuff pockets with glucose tablets and ‘just-in-case-cash’, make light of (so as not to burden anyone), solving and resolving all the stuff that happens because of my diabetes, or all the stuff I’m trying to avoid happening because of my diabetes. Call me crazy – but my A1Cs are in the 5’s because of all I do, and that’s where I plan to keep them. Also, I’ve never been unable to treat a low blood sugar myself.  I do what I do so that to the best of my ability I’ll never be in that position and so that I will have the longest, best run possible. 

 

At the International Diabetes Federation conference two weeks ago, Michael Weiss, Past President of the ADA, gave a presentation about what living with diabetes has been like for him. From his half hour talk I remember two things:

 

1) Even when he got cancer and was petrified and went through a year of chemo, now that he’s five years cancer free it no longer occupies him. Yet diabetes still does every day. He said so. He also said when he had cancer, “All I had to do was follow my doctor’s instructions. It was easy. With diabetes I have to make all the decisions every single day. It’s never-ending.”

 

2) How much of his thinking is monopolized by diabetes

 

I’d never thought how much of my time/energy/thoughts are monopolized with diabetes until Michael said it – and then, bling, I realized how true it was, and felt oddly validated by hearing someone else say it. Maybe it’s the curse of an overly responsible type 1, or being on insulin no matter what type you have, but today I want everyone in the world to know that when I say you can find a gift in your diabetes, I mean it. And when I say managing diabetes is a second job, I mean it.