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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!
Do You Know Simon?
If not, that’s a damn shame. Allow me to introduce him.
Simon is a thirty-something Aussie with a penchant for song lyrics and long walks along the coast. He was diagnosed with diabetes 7 years ago, after which he went through a long, difficult period of misdiagnosis, apathy, complications, depression, alienation, and….well, crap. Like, lying-in-the-hospital-at-death’s-door crap.
Then, God picked him up and put him more in death’s front yard territory.
And then, Simon found the diabetes online community.
One forum, then a d-blog, then another. Then Twitter, where he found DSMA, our Wednesday night Twitter chats in which people weigh in on various diabetes issues and share lots of absurd jokes. He started connecting with various far-flung diabetics, people who were healthy and happy and living every day with this obnoxious disease. And hell, even if they weren’t healthy or happy– they shared it freely.
Simon and I became friends over time, sharing a love for good gospel music, 80′s era U2, and goofy humor. It was plain to see that he befriended a lot of people in the diabetes online community (also acronymed as “the DOC”) with his warmth, humility, and heartfelt posts on his Diabetes Daily blog. Even better, Simon started getting better. Inspired by the DOC and galvanized in his self-management, he took control of his health and started achieving flawless A1Cs.
So you can imagine how thrilling it was for us when Simon decided to make a trip to the Northern Hemisphere and meet all these fabulous d-friends in person.
Death’s door no more, y’all. Unless it was from sleep deprivation. Having regained his health and dedication to managing his diabetes, Simon found a job…..and promptly started working double shifts like crazy to pay for this little intercontinental jaunt. Sixty, eighty, ninety hour weeks. Five days off in six months. I’d open Twitter and stare in stupefaction at my computer screen as Simon merrily tweeted, “3 AM…halfway through a 28-hour shift and I’m feeling great!”
The moment finally arrived in October. After touching down in LA, Simon hit up Kansas City and met with no less than 25 PWDs and their loved ones. The experience was a suckerpunch of emotions and love, as many who were there have written– you can find a list of blog posts on C’s Life With D
After Kansas City, Simon came to NYC and spent a week here. Lucky duck that I am, I got to hang out with him almost every day. We talked about love, music, God, advocacy, motivation, marriage, work, sickness, and health. We also had in-depth discussions of awkward pickup lines and Vegemite. We heard accordion players in Little Italy and street preachers on Coney Island. We randomly burst into song on the sidewalk. I laughed so hard that my sides hurt and I woke up one morning with a splitting headache from smiling all day. I got to expose him to the wonderful diversities of this city by taking him for soup dumplings in Chinatown and Balkan brass music in Brooklyn. (His opinion of both was….questionable.) And then, in a fantastic culmination, fifteen of us East Coasters gathered at a bowling alley that Saturday to hang out, eat cupcakes, bowl a lot of gutter balls, and, I don’t know….bask in Simon’s down-under glow.
Obviously, it was all great fun. But there was something to it beyond that. It was like there really was a glow during the entirety of Simon’s stay. Part of that is just because the guy is incredibly affable. Part of it is a natural outcome of D-meetups. But it occurred to me, as we were sitting around at the bowling alley noshing on special-edition Simonpalooza cupcakes (thanks to Tina) and shooting the breeze…..that this gathering was all about love. Usually diabetes meetups occur because of a larger event: World Diabetes Day, the rally for the UN Summit on Non-Communicable Diseases, even dinner after an ACT1 support group. But that day was the first time for me that we were gathered simply to share the love and power of community. To meet new friends and greet old ones again. To talk for hours about everything besides diabetes, but to not bat an eye when a CGM starts alarming or somebody needs glucose tabs. And an opportunity for Simon to share with all of us his profound gratitude for being, in his own words, his “closest allies through a period of near blindness and extreme disability, nurs[ing] me through erratic and unpredictable blood sugars….”
“I consider some of my ‘online’ friends closer than family, for without their support and understanding of the diabetic journey I shudder to think where things might have ended in my spiral into depression and isolation.”
No, Simon, I’d say you’re pretty far from isolated now.
 The NYC Gang at the Bowling Alley Tricia, David and I recorded a video blog (or vlog) the night after Simon left to return to Oz. The two of them shared their thoughts on the experience, and I shared…well, my thoughts, but also a song. Community exists for us to support each other. In the same way that many of us helped Simon take back his life from death’s door to death’s neighboring state, he helped us by bringing so many people together. We’re all in this together. You might say (to borrow some words from Bono) we get to carry each other. Or, to take from Bill Withers, we get to lean on each other.
To Simon, if you’re reading this: thank you for being the brilliant, amazing guy you are. You gush on and on about what your trip meant to you, but I rarely could express what it meant to ME– that, for me too, your week in NYC ranked among the most awesome in my life. I miss you like someone cut off my right thumb the day you left. I can’t wait until we get to see each other again….Tim Tams or not!
To everyone else: I hope you like my singing. And my twitchy gesticulating. Here’s the link to “Lean on Me, Simonpalooza Style”
PS. I mean it when I said that I was singing that for days whenever I walked down the street. One night some dude starting singing back to me. I think he mixed up his songs though, given that he looked me in the eye and belted out, “And darling, DARLING, stand! BY ME!”
PPS. And then when I was walking to the train station to head to bowling, a guy standing on his stoop said, “Hey, nice voice.” “Thanks,” I replied, and kept walking. He called after me, “If I give you my number, will you sing it to me?”
Awkward pickup lines. More common than diabetes.
In other news……..I AM RUNNING A MARATHON ON SUNDAY.
Yes, the time has come: the 42nd annual New York City Marathon is this Sunday, November 6th. Once again, I am running with my dad. Once again, I have endured many miles, many high and low blood sugars, and many loads of sweaty-gym-clothes laundry to get to this point. Expect a full update later. But if you read this before, say, 4 PM on Sunday….please send us some prayers and good vibes! I am a little nervous and a LOT excited. 26.2, guys– bring it on!
Today marks the eighth anniversary of the day I was diagnosed with Type 1 diabetes.
Some people don’t remember when they were diagnosed. Some people let it pass without notice. Many diabetic friends, I have discovered, celebrate their “diaversary” with….cupcakes! Delicious irony, if you will; a way to give the middle finger to diabetes and have fun doing it.
I’ll tell you the truth: I can’t be happy today.
I wish I could. I consider myself to be a terrifically cheerful and optimistic person. I do laughter yoga, for goodness’ sakes, which teaches you to laugh even when you break things and are running late and have no money. You’d think I’d be able to throw a shindig with desserts galore, or in the very least let June 27th pass with nothing but a shrug.
But ever since I was 17, the day passes with a little more emotion than a shrug’s worth.
I’ve talked with a bushel of diabetics about their diagnosis story, and I can safely say that nobody (yet) followed the strange and dismal path to diabetes that I did, rife with mysteries and misdiagnoses. That’s another story entirely, one probably not appropriate for the Internet, but suffice to say that when we showed up at Children’s Hospital of Philadelphia that day to see their adolescent medicine specialist, I was brimming with anxiety. I still remember my stomach flip-flopping as I sat in the waiting room. I still remember studying the wallpaper with crosseyed concentration, trying to distract myself from boredom and nerves.
I still remember the doctor walking in and telling me, “You have lots of sugar in your urine,” in a gushy voice reserved for kids young enough to believe in Santa Claus. He never actually said, “You have diabetes.” I still remember wildly hoping in the days and weeks that followed that they were wrong, that somehow this was another mistake the doctors had made and that everything could be fixed with a pill.
I still remember the choked-back fury I felt towards my parents, who had dismissed me in various ways when I thought that something was wrong: scolded me for eating too much or always needing bathroom breaks, flat-out denied that I may have diabetes because I wasn’t chugging a gallon of water every day, or accused me of of having an eating disorder.
And the rage towards my doctors at home, who had seen me, who had looked at my food diaries of 4,000 calories a day with no weight gain, and who just referred me to outside specialists. With a little internet sleuthing I figured out that I might have had diabetes; how did medical professionals miss it? FOR MORE THAN A YEAR?
Despite the anger, I still remember the complete numbness I felt when my mom, stepdad, and I drove to the inpatient side of the hospital, in order to go to the ER and be admitted.
I still remember the ravenous hunger I felt, hooked up to the IV drip at 9:30 PM and scowling at the flabby chicken and limp broccoli that the hospital provided. When the nurse came in and presented my carb options for McDonald’s– just chicken nuggets, just fries, or a mix of both– I grumbled, “Both, for the love of God give me AS MUCH AS POSSIBLE.”
I still remember my stepdad turning around to drive the three and a half hours back home, to get clothes and my toothbrush and the things I needed to last through a hospital stay, as I kept thinking to myself, over and over, Is this really happening? Or is this a bad dream? I actually pinched myself, alone in the bathroom, where I had to pee in “the hat” so that they could monitor my outrageous ketones.
The pinch hurt, just like the IV needle and the nurses sticking my fingers and the insulin injections I would learn to give myself without so much of as orange to practice on. Not a dream. Dammit.
My life has changed a lot as it has unfolded. Hell, my life has changed a lot in the past eight years. But nothing changed my life so suddenly and drastically as the day I was diagnosed. Sure, there was the day that my parents told us they were getting divorced, or the day that I moved out for college, or the day that I listened to “Born to Run” all the way through for the first time. But June 27th is the only day of my life that drew a line in the sand, between how things were and how things would be. As my mom said that autumn, in the waiting room of one of many, many doctor’s appointments that followed, “You’ve got B.D. and A.D.– Before Diabetes and After Diabetes.”
I still remember realizing this, on day 3 of my hospital stay. It hit me abruptly and without warning, like a collision: my life was never, ever going to be the same. I was always going to be pricking my finger and figuring out carb counts and injecting insulin and dealing with the stress of it. I shut the miniature bedside TV off and sobbed until my chest hurt.
So I can’t be happy today. I can be grateful for the good things that diabetes has given me since June 27, 2003. I have a passion for health in my personal and professional life, lots of fabulous friends I’ve met through the d-community, and the patience and grit that you only earn by living with challenges. If you ask me what my life would be like without that line drawn in the sand, I couldn’t tell you– because at this point I can’t imagine my life without diabetes.
But if I could be rid of it tomorrow, I would. I can’t muster much glee today, because the painful memories remain sharp. I can’t be happy today because the past eight years have also had so much stress, confusion, tears, anger, frustration, hopelessness……surgeries, procedures, diminished eyesight and poor circulation and fear of worse complications in the future…..blood, pain, wounds, and scars.
So I’m going to take care of myself today. In a laughably terrible turn of events, I actually have to spend the whole day in a professional seminar about….the diabetes epidemic. (Breakfast and lunch apparently will be provided. What are the odds that they are disgustingly high-carb and unhealthy?) I’m going to go to my Monday night laughter yoga club and soothe away the sadness with giggles. Unlike the vast majority of my d-friends, I’m not going to have cupcakes or cake or ice cream or whatever desserty concoction you can think of. I understand why some people take pleasure in it, but to me– why eat something where I totally guess the insulin dose, still end up spiking high, feel icky, and am reminded of the suckiness of diabetes all over again? No thanks. I’ll be comforting myself with zero-carb treats, the foods that I can indulge in precisely because I’m diabetic and don’t need to worry about my blood sugar when eating them.
So you’re all welcome to share the cheese I’ll be slicing and the bacon I’ll be frying.
I’ll be eating it with the hopes that I can maneuver through yet another year with Type 1 diabetes with grace, problem-solving, courage, laughter, and the space to feel sadness whenever it comes up.
ACT1 is doing a campaign to help those who are underinsured and those who are without any insurance to procure necessary test strips. The petition on our website is addressed to Roche Pharmaceuticals, asking them to extend their Patient Assistance Program. It is an awesome cause, as I know, since I was without insurance myself for almost 8 years.
I was diagnosed 1 week after turning 21. Medicaid covered me up until I my 21st birthday as long as I was a full time student. I had been getting really sick by the beginning of the Spring semester and I missed so many classes I was dropped. All I could think of as I lay in intensive care was “How the hell am I going to afford this hospital bill.” It had not yet dawned on me just how expensive life with the disease was going to be.
I applied for emergency Medicaid and was able to dodge the bullet that was the hospital bill. I was also able to get test strips, needles and insulin. Yay! Then I had to get a new job. My Mom was not healthy and I had two young siblings at home. So I kept the nanny gig I had and went to work at A&S a sales clerk.
Holy Moly! Racing after three kids when you are just learning how to take care of yourself, with your newly diagnosed chronic illness, not easy. I was low all the time. I truly thought they made a mistake, I couldn‘t be a diabetic. No one explained the Honeymoon phase to me.
I struggled. I only had enough test strips to test 4 times a day. So if I felt hypo or hyper I was using up my allotment of strips. Couldn’t do that. So I began guessing. Wow when I think about the damage I was doing to my body, straight out of the gate, I feel blessed I am still around to talk about it.
Now, because I had a nanny job I couldn’t work at A&S full time. I didn’t know that I was risking my Medicaid. Within 1 year I was dropped and completely uninsured. Up until then all my medical bills were covered. I had no idea what I was up against. I learned quickly though.
As time passed I became more educated about Diabetes. I realized that I couldn’t guess my numbers. Diabetes was serious business. I also learned how expensive test strips were, how high the price of insulin and needles. I couldn’t help my Mom and get my supplies on what I was making. So I got a job waiting tables and quit A&S. How hard could waitressing be? The answer to that question could be a blog in and of itself.
Waiting tables was fun and the money was good. I was able to help my Mom a little more but I still could barely afford necessary supplies. Eventually I began guessing again and of course I could not afford to see my endo very often, even if she was with the clinic.
The kids I watched were all old enough to go to school now, so that job was over. I took crazy job after crazy job and worked at the restaurant as often as possible. The price of supplies went up and so did the cost of clinic visits. Now I had choose between buying supplies or seeing doctors.
I went to Pastry Arts School and then worked crazy hours in restaurants without insurance for years. My family gave me test strips and insulin for Christmas and birthdays. A box of 25 test strips was like receiving a gold brick.
One day I went to pick up my needles at the pharmacy and was told the clinic couldn’t call in a prescription till I went back to see an endo. Well that was not possible. So I used the 1 bag of needles I had left (10 needles), for the next year. Luckily insulin and test strips could be bought over the counter.
Talk about bruising. My stomach looked like a Rorschach test. I was not testing nearly enough as I should be. I didn’t see a doctor for almost 5 years. So I was still using NPH and Novolin long after I shouldn’t have been. I went years without an A1c test.
Over the years I worked full time at 3 separate restaurants. I couldn‘t get medical insurance in any of them, even working 40-60 hours a week. One did not offer insurance (a situation for many restaurant workers), the other two offered me insurance but I would be hit with a preexisting condition. I couldn’t afford to pay for insurance that wouldn’t allow me to see any doctors or get any meds or supplies connected to my Diabetes for a year and still pay for the supplies on top of that.
I did eventually get insurance at a restaurant with an owner who heard about my situation and got my preexisting condition waived. Unfortunately, I lost that job after two years because of Diabetes complications. My boyfriend paid for my COBRA, then he was able to get me on his insurance. I won’t say I’m not lucky this was possible but what we pay for our insurance to cover all my meds, to cover all my complications, is outrageous.
All the years of guessing and working through highs and lows I didn’t know I was having really did take a toll on my health. I am only 38, I have had Diabetes for 17 years. I did my best but without proper care it wasn’t good enough. I am now on disability because of D Complications. If you think that’s the answer to my problems, you are very wrong. To get coverage that will cover all my medications, I would have to pay more than they give me for disability.
I am the perfect example that being able to test your sugar is vital to your health. Please, please, sign our petition. It won’t cost you a dime. Yet your signature might just be worth a life.
The problem? Our lifeline is too short.
ACT1 can only supply a month’s worth of test strips to each recipient, and we cannot provide strips to everyone who applies to our program. Previously, we would direct recipients and those we could not serve to patient assistance programs for a long-term supply of strips. These programs, however, often failed to address the crisis caused by unaffordable supplies:
Johnson & Johnson, makers of OneTouch, only offer a discount card with approximate 30% savings on products. For 100 strips per month, that still means paying $70-$90 out of pocket.
Bayer Pharmaceuticals, maker of Contour and Breeze meters, has no program for test strip assistance.
Roche, makers of Accu-chek meters and strips, recently restructured their patient assistance program. Instead of individuals applying for and receiving strips through the mail, they now must travel to one of only five clinics in each state, register as a patient there, and receive an allottment of test strips through the clinic. These strips are free, but the cost involved in becoming a patient in one of these five clinics can often exceed the cost of over-the-counter test strips. A member wrote to us, ”One manufacturer, Roche, who did offer assistance changed their program this year and only offers help through free outreach clinics. It sounds like a great idea, unless you happen live in an area without free clinics. We live in a rural area without any free clinics; since we live in a different county, we aren’t eligible for test strip assistance at those clinics within driving distance. (Also, they are 1+ hrs. away). But, my diabetes didn’t go away during this time… I still need to test.
And Abbott, the makers of Freestyle strips, recently shut down their patient assistance program. They are currently directing ex-members of the program to buy discounted generic test strips, which cost $30 for a supply of 100. This is not enough for our community members. As one person wrote to us, “Abbott cancelled their test strip distribution program, now I am forced to chose between paying to test my blood sugar and putting food on the table for my kids. Of course I have to buy food. But I have type 1 diabetes and need to test my blood sugar, I don’t know what to do.”
We in the ACT1 advocacy committee try our best, but there’s no way that our program can help everyone that needs help. Even after our donation drive, we still have a long waiting list. In the past week we were able to send 16 packages to PWD’s around the country with life-sustaining supplies, yet we still have 117 people on the wait list. Over one hundred people….and that only accounts for people who have managed to find out website. Nearly all of our recipients need long-term help with test strip expenses until they can find work and health insurance. We want to help everyone, but we can’t keep slapping Band-Aids on a wound as deep as lack of healthcare access and expect everything to turn out right.
This is where we need you– the DOC, our friends, family, Type 1′s and 2′s and LADAs and caregivers– everyone! We are advocating for companies to expand their patient assistance programs so that no diabetic has to go without the supplies they need to stay alive. We understand, and we ask you to understand, that our circumstances can always change, thus when one diabetic has no access to test strips, our entire community is affected.
For several reasons, we’re beginning this campaign for test strips for ALL with Roche Pharmaceuticals. We are asking Roche to commit to mailing test strips to patients who live too far from the five designated health clinics, in order to provide more equal access. What can you do? Contact Roche. Sign our petition. Tell them that people with diabetes NEED to be able to check their blood sugar and accurately plan their treatment. Tell them that, even though they may be strapped, they need to lead the way in keeping their consumers and customers healthy. If you’re an Accu-chek user, tell them that you would consider switching meters if they did not fully support a viable patient assistance program. If you use a different kind of meter, lodge a complaint with them for their inadequate assistance programs– especially if you use Freestyle.
Together, let’s make our advocacy tangible. Let’s do some good for our brothers and sisters without health coverage who can’t afford to keep themselves healthy. Let’s raise our voice to Big Pharma and demand that everyone with diabetes deserves adequate test strip supplies!
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