diabetties.org

I use the Medtronic Minimed Paradigm 522 insulin pump. For the most part, it’s one of my best friends. It has to be! But sometimes, it seems to enjoy pissing me off.

On Saturday, for example, my husband and I had a late start to the day and were on our way to downtown Los Gatos to enjoy the nice weather, walk our dog, and run a few errands. It was late in the afternoon when we got there, and the first item on my agenda was to find a place to eat. We walked up and down the main strip, and as we walked, my stomach growled, and my patience grew thin. By this time, it was close to 2PM.

My husband picked a cute French bistro (we have a soft spot for all things France because that’s where we got engaged) and I waited outside with Nickel while he got the food to go. About 15 minutes later, we headed to the plaza to dine alfresco. It should have been romantic. The sun was shining, nothing but blue skies… I had tested my blood sugar, set the my dual wave bolus on the pump, and was about to sink my teeth into a ham and brie sandwich when I heard a frantic beeping. It took a second to realize that it was my pump alarm. I put my sandwich down, take out my pump and it’s flashing “NO DELIVERY”. Great timing, right? It’s always a little disconcerting when I get a no delivery error. I made sure the tubing wasn’t kinked, canceled the error and resumed the pump, programming the rest of my bolus. I’ve had times when I get the NO DELIVERY error many times in a row and I have to change my infusion set, but luckily, it seemed to be fine and I didn’t give it a second thought.

Until this morning. I got up early to make a hot breakfast. Everything is ready, table set, food steaming hot, and I dial up my insulin and am ready to dig in when what do ya know? Beep Beep Beep! NO DELIVERY. This time, I change the set since I’m at home and have no excuse. There’s no obvious reason for the error. (Sometimes the catheter is bent). Puzzled, I change the set, program my pump, and move on…

I think the most frustrating part of this experience is the irksome timing of the error - always as I’m about to eat.

Sound familiar?

This may be old news to all of you, but I was in the checkout line at Safeway the other night when I saw a magazine with Casey Johnson on the cover. I am pretty bad at keeping up with pop culture and while I knew that she recently died at the age of 30, I didn’t realize that Casey Johnson was heir to Johnson & Johnson. (In fact, I wasn’t even aware of how enormous the Johnson & Johnson “empire” was until just now. When I hear Johnson & Johnson, I think of no more tears baby shampoo or baby powder, but they have a whole family of companies that includes a huge market share of diabetes testing, insulin delivery, and medical supplies and SO much more!)

Anyway, I looked Casey up when I got home, and she was diagnosed with type 1 diabetes when she was eight years old. She seemed to have a bright future and with access to such incredible family resources, the potential to live a long and healthy life with diabetes. In her young adult years, she was a diabetes advocate, raising money to find a cure and even co-authoring a book with her parents on managing your child’s diabetes.

I’m not going to talk about how she got off track, or about how in the last few years before she died, she was living a life of illicit drug use, drinking, and partying with socialites. The tabloids covered all of that. What I want to talk about is that in spite of Casey’s privileged family and potential access to the best medical care, she had developed “brittle diabetes.” (There are lots of resources and medical jargon you can find on the topic.) I had never heard this term before, but brittle diabetes is essentially uncontrolled type 1 diabetes. People with brittle diabetes sometimes do not experience the symptoms of hypoglycemia (very low blood sugar) or hyperglycemia (very high blood sugars), which is very dangerous. Chronic hyperglycemia leads to diabetic complications such as nerve damage, neuropathy, etc.

I just can’t imagine how difficult it must be to live with such wild fluctuations in blood sugar. I mean, sure, I have swings sometimes where I have a low, stuff my face frantically to get my blood sugar up, and then it sky rockets before I get it back to normal range. But at least when I am hypoglycemic, I can tell. My heart starts racing, I get lightheaded, and sometimes even break out into a sweat. When I am hyperglycemic, my mind feels foggy, tired, and my mouth is dry. It feels like I’m trudging through mud. These symptoms - while annoying at the time - are a lifesaver. They tell me to test and treat accordingly. Like right now - I realize I feel a little shaky. After all, I had a salad for dinner and worked out. I better go test and treat.

How about you? Know anyone with brittle diabetes? How has it affected his/her life?

Today is my brother’s 33rd birthday - which means that it is also the 8th anniversary of the day I was diagnosed with type 1 diabetes. I just reread the story of my diagnosis - it’s been a while since I relived that day, and I still get chills when I read about that defining moment when I changed my attitude and decided that living with diabetes was not the end of the world.

I was on the way to my brother’s birthday dinner with my parents, when I realized that this was my diabetes anniversary, and I noticed a sadness fall on my mom’s face. I squeezed her hand, and she looked at me with a hint of guilt in her eyes. After all this time, I think she still harbors guilt for “giving me bad genes” or not being able to protect me from a life burdened with finger pricks and insulin shots.  I was planning on taking breaks from blogging over the weekends, but I had to commemorate this milestone with a blog, and when I said that, my mom’s expression went from sadness to relief.

Would my life be simpler without diabetes? Of course. But I’m doing just fine. Diabetes has taught me so much about myself and ironically, enriched my life in unique ways. It’s given me direction, a purpose, and a connection with millions of people out there who are also living with diabetes. And until there’s a cure, I will keep on keeping on, doing the best that I can, and living each day to the fullest.

This, my friends, is the needle that I insert into my abdominal area every 3-4 days. And believe it or not, I’m not complaining. In fact, while this needle is 13mm long (more than twice as long as the infusion sets I used to use), I prefer this one much more. I didn’t always feel this way. I used to be terrified of this thing - especially of the insertion device that is essentially a harpoon. The trick is, this needle goes into my body at a 45 degree angle, so it just sits in my fat. I gave up on the harpoon and insert the needle manually now. All I do is pinch some flesh and stick it in at an angle. The needle itself doesn’t stay in my body. I pull that out, and a plastic cannula (like what delivers IV) stays in my body, delivering the insulin I need.

The 6mm needle that I used to use before would go in at a 90 degree angle, and while I often complain of my muffin top or love handles, I guess I am my own worst critic because I would often hit muscle and it would bend the tip of the cannula, essentially blocking the flow of insulin. As a result, my blood sugar would sky rocket nearly every time I’d change my infusion site. It was so frustrating that after a while, once I’d find a good site, I didn’t want to change it. This isn’t good either. You’re supposed to change it every 3-4 days so that you don’t build up any resistance to insulin at that site. It could also form hard posits of fat underneath the skin, which not only is a little tender, but unsightly as well.

So anyway, I was changing my infusion site this morning and thought I’d share this experience with you. It’s not as scary as it looks. Okay maybe the first time it is, but after that, it’s a piece of cake.

For those of you Diabetties using an insulin pump, what kind of infusion do you prefer?

I won’t deny it - I love to shop. I’ve blogged about my shopping addiction before and its unusual effect on my blood sugar... but ask anyone who truly knows me, and they will tell you that I am a smart shopper. I detest malls, (unless it’s a beautiful outdoor shopping mall), and absolutely adore bargain discount stores like Marshalls, Target, flea markets, Goodwill… but most of all, TJ Maxx. TJ Maxx is the cream of the crop, the cats pajamas, the bees knees - they’re the most well organized of the discount stores with really high-end name brands, ridiculously reasonable prices, and best of all - they’re usually teamed up with a fabulous Home Goods Store. I can’t say enough good things about TJ Maxx. But I will!

I was thrilled to learn that TJ Maxx stores across the country have been raising money for Joslin Diabetes Center’s High Hopes Fund. This promotion has been going on since January 10, and will end on January 23 - so go shopping this Saturday! One dollar can make a difference…  Just imagine the world of possibilities in diabetes research if everyone gave just one dollar. To find a TJ Maxx store near you, visit www.tjmaxx.com.

I can’t wait to hear what fabulous finds you get at TJ Maxx this weekend! (And don’t forget to bring your own reusable shopping bags. I have heaps of them in my trunk, and always make sure to grab several of them when I hit up my favorite stores.)