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What They Should Know

 

“What is the one thing you would tell someone that doesn’t have Diabetes, about living with Diabetes?” This is definitely the hardest topic yet for me. I have pondered the answer for days now. I even found myself thinking about it when I was trying to fall asleep. Today I have put off this blog as long as I can, just hoping the answer would eventually come to me. It is not that I cannot think of anything. Actually it’s the opposite. There are so many things that it is hard to choose. I know I could write a long post about all the things that come to mind. However I really wanted to figure out which thing is most important to me.

I made a huge list. I was lost. Then, Thursday morning I woke up to my meter reading “HIGH” and I knew I had the answer. My extended highs are followed by extensive and serious lows. For me, the hypers are painful and dangerous, but it’s the hypos that I fear the most.  I am not talking about when your sugar hits 60. I am talking about the 40s and below. After all, my lows have come close to killing me on more than one occasion.

I have “Hypoglycemia Unawareness.” Basically I do not get warning signs that I am low. Especially not if my sugar drops quickly.  I don’t get sweaty or shaky. OK that is a lie. I do occasionally get symptoms, but it’s rare. This makes lows even more dangerous because I can go pretty low before myself or someone else realizes something is wrong.

I have done and said some really shitty things to those I love while low. My poor boyfriend gets the brunt of it. I have yelled, screamed, even become violent. Heck he had to bite me once just to get a Glucagon in me. I know he and others logically understand the experience. That is not the same as living through it though. I see the pain in their eyes and wonder what I did while low to cause that pain. They say they know it’s not me but I don’t believe that they walk away from some of these lows unscathed.

Please don’t think I wish Diabetes and/or hypoglycemia on my worst enemy. I do not even want anyone to experience a whole day with D. I just wish the people I have hurt while I am low could see how it feels, just once. I try so hard to explain to them that are times I am not in control of my actions and especially my mouth. I can be a mean hypo.

I don’t wear a CGM because they just don’t help me. I was averaging 1 out of 4 sensors working and that was with a CDE inserting them and setting them up. I do test like a fiend. Sometimes life gets in the way though and a low slips by me. Also, if you are unlucky to be around me during the “episodes” as we have come to call them, you are dealing with me never getting my sugar over 60 for sometimes over 24 hours straight. I am also cranky and achy for days after just trying to recuperate. First the highs, then the lows. I feel like I have run a marathon…barefoot and without water. I just plain hurt!

So please, if you love a Diabetic (or just happen to meet them in the wild) and they are having or just had a low, don’t say things like:

“Oh I know, I hate when I’m hungry” – you have no idea what hunger from a low feels

“Doesn’t your pump prevent this from happening?”- Yes, it is capable of doing that but I choose not to press that button

“Are you all better now?”- I’m back to normal range but it will take a while to be “all better”

“I wish I had an excuse to eat all that sugar”- NO, trust me, you do not!

“Why do you let this happen?”- Are you serious? You think I choose this?

“Your sugar being low is no excuse to be mean”- Well, actually it is! If you ever had a hypo you would know that what you say is false.

OK I am done grumbling. Maybe the lows having just ended less than 12 hours ago has made me cranky. And yes, it is a good enough reason…

Fantasy Diabetes Device


Let’s face it, I only have one real with and it’s for a cure. I always tell people that I am sick of new devices. I personally feel there would already be a cure if all this money was spent on research and not devices.

However, Karen has given me permission to let me mind wander to a fantasy device. So, I’m  going to do it.

Turns out this topic is so much fun! My mind just cannot stop. I have a new idea every three seconds. Like a meter that doesn’t need blood, yet is accurate. Or maybe a pump that doesn’t hurt and/or could anticipate my insulin needs.

There are just so many different wants and needs in the D world. I really can’t stop my imagination, it’s truly spinning like a whirling dervish.

Still, two stand out amongst the rest. The first thing I would wish for is a Magic Carb Reader. It would attach to my iPhone and all I would need to do is run a sample of what I am eating under the LED light at the bottom and it would tell me how many carbs per ounce, gram or volume. Life would become so much less stressful! No more guesstimating for this girl.

My second idea is not really a device, it’s a medication. A medication that already exists. I want a new insulin. All the wonderful research being done for a closed loop system is worth nothing without an instant (hell I’ll take close to instant) acting insulin. Sure, Novolog and Humalog are faster than Regular and NPH. They just aren’t fast enough.

Did you notice how great my two ideas go together? So, till there’s a cure…

One Thing To Improve

 

Day 3 of Diabetes Blog Week 2012. Karen has asked us to choose something we need to improve in our D care. I like the idea. Everyone needs a cheerleading section rooting for them on the sidelines. Or in our case the D lines. So here goes…

Hmmm, what a long list of things to choose from. I feel like I am drowning in Diabetes care guilt these days. Strange health issues that are and aren’t (or “may” be) related to my D are consuming my life right now. My Diabetes has definitely been put on the back burner.

I am not saying that I am doing anything crazy like not testing. I just feel like I have gotten lazy. I am not counting carbs, so much as I “guessing” carbs. I am not reading labels or consulting my carb counting apps. Hell I haven’t even downloaded any onto my new iPhone.

I wish I could get rid of all the issues that are consuming my life right now and focus on getting my D care back on track. Unfortunately, I have been asking Santa for a magic wand since I was 4 and I’m still waiting…

OK, I need to get myself together. Especially because I am not in good health, not at all. So, if you’re listening out there, please let the cheering begin…

 

One Good Thing

Karen over at Bitter-Sweet has again come up with wonderful topics for The Third Annual Diabetes Blog Week and for the first time I am joining in :) I wanted to start yesterday but my new home on the mountain and rain storms don’t go together well when it comes to internet access. It has been a long time since I have written a post but I think this is just the kick in the rear end I needed. Thanks again Karen.

 

Wow! What a great topic to start with!  I can think of a million things I do wrong, that would be a hard topic just because there are so many to choose from. When it comes to something I do right though, one answer jumps out at me automatically. I am  (mostly), always prepared for a low. Especially at bedtime. If someone who didn’t know I was a PWD, saw my nightstand they would think I was a candy, juice box junky!

Along with the sweets you will always find a Glucagon on me and in my nightstand. I have had many overnight lows and I take them very seriously. Unfortunately sometimes I wake up low and don’t remember there is a choice of sugar next to me and I panic and try to get into the kitchen. Oh well, at least I am trying and that’s the best any of us can do.

These Vagabond Shoes (Are Longing To Kick Back With a Diet Coke After the New York City Marathon)

So, as I mentioned last week, I ran the New York City Marathon on Sunday. And, well, it can best be summed up in one word:

Whew.

–Whew, because the day I had been awaiting for two years finally arrived with plans intact. I resolved to do the NYC Marathon in 2009, after spending eight hours passing out Gatorade as a volunteer and being caught up in the humanity, courage, and laryngitis-inducing joy of cheering for runners. I had only one half marathon under my belt at the time, but after that I: became a member of New York Road Runners, completed my 10 qualifying races, signed up for my first marathon in order to prepare for the chaos of NYC, trained for my first marathon, ran my first marathon, paid a gazillion dollars to register for the NYC Marathon, and then underwent four months of endurance training.

–Whew, because training for a marathon on MDI (multiple daily injections) is a whole different beast than running with a pump. Adjustable basal rates? Forget it. Moderately predictable blood sugar patterns during and after exercise? Nope. I had a dizzying appointment with my endocrinologist just hashing out morning exercise: “Well, the first thing I’d suggest is to increase your nighttime dose of Levemir by two units. But then you should also decrease your daytime dose by 1 unit to keep from bottoming out. You could also try a small injection of Novolog in the morning before you exercise, to prevent spiking. But if that’s the case, you may want to lower your daytime dose of Levemir, since it looks like you run lower late in the day. Unless you decide to eat a snack in the afternoon, but make sure it has a little fat and protein to steady your levels. You should also try some 2 AM blood sugar checks to see if we need to change your insulin to carb ratio at dinner, since it looks like you’re waking up high on some mornings– but only when you don’t exercise the night before, right? Wait, the time on your meter was reset?”

Ironically, my insulin needs only seemed to go up since I amped up the intensity on my exercise regimen. Then again, is it really ironic, given the sometimes maddening unpredictability of diabetes? I hear over and over the importance of practice, of maintaining consistency on your long runs so that you can rehearse and prepare for race day. But I feel like I had no discernible blood sugar trends on my long runs. Luckily, the majority of my long runs were stable. Well, except for the 16-mile horror in August when I was lost, dehydrated, and hovering in the 60′s according to my CGM but somewhere in the 200s by my meter.

–Whew, because I spent most of the race just feeling….exhausted.

The beginning was glorious. We gathered in Staten Island ahead of the Verrazano Bridge. The sun was shining, the temperatures warm but not unbearable. I was with my dad, who had gained entry through a charity team and raised a mind-boggling $12,000 for the Chicago Diabetes Project, a research collaborative aimed at curing diabetes through islet cell transplantation. (So proud!) I had worked hard in training, harder than last year, and felt confident that I could finish a full hour faster than our time at the Marine Corps Marathon (5:45). There weren’t even any lines at the Porta-Potties. The cannon went off, everyone cheered, “New York, New York” began to blare from the speakers, and we took off.

I found my friend Jess at the start, and we ran the first mile or so together. “I took a hip-hop class on Friday,” she groaned. “Now I’m sore.”

“Good lord! Two days before a marathon?!” I exclaimed, thinking to myself….I sure hope I’m not in as much pain as she’ll be by the end.

Optimism still reigned as we crested the Verrazano and hit Brooklyn. Brooklyn! My home borough, my tribe, and possibly the best six miles I’ve run in my life! I felt so energized, running up Fourth Avenue and seeing for the first time all the cheering spectators. We skipped through the neighborhoods where I used to live, where I work, where I live now. I found my first friend in the crowd, Tanya, and waved frantically. Dad and I continued running on pace as I spotted my roommate Michelle with her fabulous sign incorporating– who else?– Bruce Springsteen. And then, glory! My Team in Training buddies from the spring season were up at mile 7, waving purple pompoms and cheering enthusiastically as I somehow managed to simultaneously down a cup of Gatorade, run, and shriek “Hi!!” to everyone going by. We were right around our goal pace then. Unbelievably, the first eight miles melted by like nothing.

And then…I just started cracking. We turned up Lafayette Avenue, and it became apparent 1. just how deceptively hilly this course was, and 2. how much I had run on all the flat parts of New York City. (Why, self? WHY?!) My breathing became more labored. I slowed way down. The thoughts started running through my head: God, what is happening to me? I’m exhausted. I’m so tired already. I still have 18 miles to go?! What is this madness? I can’t do this. Why? Why do I put myself through this misery? Get out of the way, all you stupid spectators! Why are these kids in the street trying to high-five me, don’t they know that I can barely move in a straight line right now?!

I am usually so cheerful that sunshine beams out my nostrils, so all of that indicated to me that something was up.

“Dad,” I said, “let me pull over and test. I think I’m low.”

And according to my meter, my blood sugar was 91. CGM 108. So, by the numbers, I was just…wimpy.

Or did I hit the wall? Being a diabetic athlete, I never gave much thought to the infamous wall, or when your body runs out of glycogen and you suddenly, resoundingly, lose all your energy. I had always assumed that the rules were different when I was the one trying to wield my hormone and glucose levels with no help from my pancreas.

Maybe the numbers were off because I had sweat and Gatorade on my fingers? Because a CGM has variable accuracy from blood plasma readings? Because the FDA allows a 20% margin of error in glucometers, so REALLY I could have been, say, 68 mg/dL instead of just….you know, wimpy?

I don’t know. But I started chugging Gatorade at nearly every mile after that, in addition to taking salty margarita-flavored Shot Bloks. And I felt a little better, but I still never regained my Brooklyn mojo. I knew by mile 12 that my original goal time was probably out of reach, unless I pulled a Rosie Ruiz and snuck through Manhattan to the finish. The negative thoughts began to creep in again:

I’m exhausted.

No! You’re not tired, Caro! Think of your favorite gospel song: “I don’t feel no ways tired, I’ve come too far from where I started from…”

Speaking of singing, why does Dad have to be humming the Black Eyed Peas? Shut up, Dad. Stop trying to rub it in that you’re not huffing and puffing like me, okay? OKAY?!

That spectator has an ugly shirt on.

Dammit, I really am tired.

How did I ever think this was fun five miles ago?

How am I ever going to run another 12 miles?

WHY DO I EVEN EXIST?!

Three angels appeared, though, in the form of my ACT1 friends Tricia, David, and Katie. Dave and Tricia, waiting at mile 14 with huge grins. Katie, wearing a chicken hat to grab my attention, jumping up and down and waving just before the Queensboro Bridge. Seeing them was the jolt that I needed to straighten up, focus, and start working harder to run strong and think positive thoughts.

We crossed over from Queens to Manhattan, shuffling at this point. I picked up a little bit with another wad of Shot Bloks and the insane crowds on First Avenue. One group sang “Sweet Caroline,” another chanting, “CAR-O-LINE! CAR-O-LINE!” (I had my name on my shirt, if you couldn’t tell. “I just thought you knew a lot of people at first,” Dad remarked after the race.) There was a U2 tribute band around mile 18. I was so excited to hear them over the speakers that I shoved my father out of the way, ran across the street, started fist-pumping, and belted out, “You got STUCK IN A MOMENT! And you CAN’T! GET OUT OF IT!”

….At which point I nearly collapsed because I got so dizzy and out of breath just from that little outburst.

Maybe dehydration was part of the culprit, because I really hate to think I’m THAT wimpy.

Dad and I soldiered on, he still singing “I Gotta Feeling,” and me still breathing hard. At least we get points for consistency from one year to the next. But last year, I remember we actually talked during the marathon. This year, I started having trouble mustering up complete sentences by mile 20. Weirdly, though, my blood sugar checks all yielded flawless numbers: 115, 127, etc. I was happy with the good numbers, but unhappy about how I felt.

My longest training run, at 20 miles, was similarly exhausting. It was on a sweltering day for October, and my blood sugar ended up crashing three times over the course of four hours. I was running alone, and ended up walking morosely a lot while listening to a Springsteen concert bootleg and chomping gels. At one point, I stopped at an arepa stand in Riverside Park, grabbed their salt shaker, and started dumping it on my hand and licking it off like I was prepping for a round of tequila shots. I knew that I was losing body salts through my sweat, in addition to being low and dehydrated. A lot of people gave me funny looks as they strolled by. I finished after four and half hours from so much walking, and staggered into Subway to treat yet another low.

Even if I felt just as miserable, I vowed to not stop and walk until I got to the finish line of the marathon.

Born to run, Caroline. Baby, you were born to run.

Yeah, okay, I’m a crazy Boss fan (in addition to being a crazy U2 fan who freaks out for tribute bands at mile 18). I had written “Tramps like us, baby we were born to run!” on the back of my shirt, with “RIP Clarence” underneath. For those living under a rock when it comes to classic rock, Clarence Clemons was Springsteen’s saxophonist and right hand man in the E Street Band, who died from a stroke this year. My 20-mile disaster was one of many long runs that were accompanied by E Street show bootlegs. In some tough moments, I thought about how Clarence– who was in his sixties, had three knee replacements, and experienced excruciating back pain throughout the last tour– could still play with joy for three hours a night. If the Big Man can manage that, I’d tell myself, I can manage this run.

So Bruce Springsteen crystallized my thoughts into a mantra: Born to run. You were born for this. You have trained for this. You have worked hard, gotten up early, endured crazy blood sugars, ran for hours, and made sacrifices for this marathon. God called you to this, God is calling you down the road to the finish because you were– born to run.

So I ran. I ran slowly, but I ran. I smiled at the spectators who cheered for us, and grinned fiercely when I found my Team in Training friends again at mile 23:



Fifth Avenue and its malicious secret inclines rolled along, until the final turn into Central Park. I found my last friends, Vanessa and Johanna, at the Cornell water station. Knowing I was almost done I gave them a quick sweaty hug and set off for the final mile and a half.

And it was only at the very end that I gained that same mojo I had at the beginning. Fellow athletes, you know how it is: the final stretch of an event has a way of spurring you on like nothing else. My focus narrowed to the end of the road: to the corner of Central Park, the turn, the finish line. If you ask me about the spectators in the last mile, I couldn’t tell you anything– because looking at any of them would break my concentration. Straight ahead, legs and arms pumping, knowing my dad was right next to me out of the corner of my eye, the two of us passing the slowing, shuffling runners left and right. Half mile, 400 meters, 300 meters, and then– oh, sweet relief!– the finish line. We powered up the last hill, grabbed hands, and crossed in 5:14:27. A loooooong way off my goal, but still 31 minutes faster than before. Improvement! I like it!

I did not like, however, the end of the race itself. Herding thousands of runners down one narrow strip of road in Central Park in order to collect their bags, when many of them are cramping, puking, cold, and ready to get the hell out of there and have celebratory beer and pizza? No fun, y’all. But Dad and I eventually escaped, returning to his friend Joe’s apartment for dinner and triumphant phone calls. (Fun fact: my dad and Joe were roommates their freshman year of college, and are still friends 40 years later.) (Funner fact: Joe is now the chancellor of Sacred Heart Prep in NYC, Lady Gaga’s alma mater. Yes, that means they seem to meet each other on a regular basis.)

So what did I get out of the whole shebang? One, the crowds in New York are easily the best part of this marathon. Out of the whole 26.2 miles, there were only a few blocks where I didn’t see spectators. The energy is electrifying. The crowds of runners make things tricky in terms of navigation, so I wouldn’t suggest NYC if you’re looking to be Speedy Gonzalez and set a PR. (Well, okay, I PR’ed, but I don’t think a 12-minute mile average counts as too speedy.)

I’ve learned not to put all my athletic eggs in one basket; I think I’m a bit bummed about this race because I had been gunning for it for so long. When expectations run too high, anything that falls short can be disappointing. So perhaps I need to practice a little defensive pessimism the next time around.

I’m reminded that my friends are fantastic, and I’m thrilled that so many of them were on the sidelines to cheer us on. My dad’s pretty fantastic, too….even if he drove me nuts with his varied renditions of “I gotta feeling, loo loo loo, tonight’s gonna be a good night…!”

I’ve learned that, yes, it is possible to dance hiphop for hours just two days before a marathon, complain of being sore everywhere, then run 26.2 miles and beat your best time by several minutes. Jess, you rock.

Finally, I’m keeping in mind that nothing happens by magic. Getting better at marathon running will take time and dedication. There are a number of ways I can improve upon the unfortunate aspects of this race. Drink more water, or experiment with eating more calories on long runs. I’m going to get bloodwork to see if my iron’s low and contributing to fatigue. I can work on developing mental toughness so that my mind’s in the game when my body feels like it’s giving out. And right now my legs are more solid than Kim Kardashian’s prenup agreement, but my core’s pretty weak– surely strengthening that would improve my running.

So the NYC Marathon was cool, but I know I’ve got a lot to work on and look forward to for my next marathon in May (again, with Team in Training. Yay!). But not looking forward to it too much….defensive pessimism and all that, right?

After reading this epic marathon post– you did read all of it, didn’t you?– I imagine you yourself have just one word to say: Whew!